Fact-Based Spirit-Guided Path

Honoring Our Marriage on Our Anniversary - August 28, 2009

2009-08-28T09:30:00.000-07:00

Participating in a Married Couples Weekend, February 2003

It’s difficult – no make that impossible – to write this without crying along with letting the words flow. The last two wedding anniversaries that Craig and I had, he was in the hospital with infection surgeries. Last year he was in Intensive Care and didn’t remember later the little party we had in his room. This year Craig is probably more with me than he was last year! However, I’m still mostly commemorating the occasion by myself…with a little help from my friends. Am I feeling self-pity? Sorrow for the change in my circumstances? Pissed off that I’ve been “abandoned”!? Yes, yes, and yes. And yet, others are encouraging me to honor the good and celebrate that we actually stayed happily married for these 10 years. I can be in that frame of mind, too. I loved Craig’s smile, his hugs, the warmth of him against my cold feet, his passion, his singing and music, his thoughtfulness in making us tea in the mornings and evenings, his enthusiasm about yard projects, his commitment to keep trying to build unity even when it seemed impossible to me, his loyalty, his steadfastness, his peacefulness…. I have been so incredibly supported and encouraged and championed in these years. Whatever work or goal I wanted to take on and do, Craig made it possible for me to try. When we met, Craig was well known for impulsively jumping into situations. He was willing to totally shift this pattern, and we learned together how to be very proficient at making consultative decisions. He was willing to transform his relationships with his family, and working together with me, he made great progress in healing them. He had the strength and confidence and love to allow me to greatly influence him in positive directions. And I did my best to allow him to do the same for me. I’m a far better person today because of the years I spent with Craig and the gentle touch of his nature on mine. We did many types of service to others separately, but we did many together. We loved “projects”! We realized early on in our marriage that we were both very capable people, and others asked both of us to do much. We agreed to not say “yes” to others without consultation, and we created a set of decision-making questions to help us determine whether anything we said “yes” to would have a detrimental effect on our marriage. We felt that maintaining our marriage was a primary form of service to ourselves, our families, and to others watching us be happy together. So, it was important to us to not be on overload and overly outward-focused. Balance and moderation were vital. Craig and I were very compatible in many ways. We didn’t like watching television, preferring to read. We did not want pets in our home. We loved to pray together, and did our best to do it daily, even when one of us was traveling. We liked to be hospitable, although he was always more relaxed about it than I was able to be. He loved to give house tours, and it took some coaching for him to give me a few minutes to hide underwear or tidy up! We were highly intentional in creating a marriage that would work for us both. Before marrying, we wrote down a list of commitments for what we wanted our marriage to look like (see below). Before these years of illness and now absence, it was our practice to re-visit our list on our anniversaries to assess whether we were on target or needed to set goals to address something that wasn’t going the way we wanted. Our biggest ongoing challenge was being too serious and having difficulty with lightening up together! One year at a marriage conference, we learned that it was vital for couples to have fun with one another to stay happily married. Once we realized that it was the responsible thing to do to have fun, we did very well with almost weekly date nights! Doing the Marriage Transformation Project together was both a joy and a challenge (www.marriagetransformation.com). We were honestly thrilled to be making a difference for so many couples. However, we ended up using most of Craig’s vacation days traveling to do workshops. So, vacations got pretty non-existent in later years or we did runaway weekends. Gradually over time, the day-to-day passion of the project became mine more than Craig’s, and we were beginning to have consultations about whether there was another passion that might draw him more fully into participation. With the marriage project, he became primarily background support with finances and planning discussions. I wonder now what his passion will be as an angel!? Craig and I were committed to having a happy, low-conflict, peaceful marriage, and I think we did great at achieving this. He did learn the skill of letting me know when he was upset at me. I had less trouble in that area! But both of us were good at clearing things up promptly, forgiving, and moving on. Being good at consulting and sharing together helped a lot. We had some pretty heavy issues over the years…finances, my parent’s divorce and father’s re-marriage, his father’s death, his son’s brain tumor, running a home-based business, kids living or staying with us, blending families, the parental consent for marriage process with two of our children, and finally Craig’s own brain cancer. So, it’s not that there were no issues in our lives. It’s just that we did well at facing them and holding one another as we worked through them. Before we got married, we recognized that we were likely to have a handful of challenges living with one another. He wasn’t all that into cleanliness and thought I’d be obsessive about it. I eased up…somewhat…and also showed him lots of benefits for it, so he adjusted well J. He was concerned about my judgmentalism…well, what can I say…it’s still pretty automatic, but I’m much better now at shifting into being loving and accepting after years of his example and influence. It took time within our marriage to recognize that while Craig was very gentle and laid-back in temperament, he never liked to do anything slowly. He walked faster than me, always eager to get to the destination. I mostly learned to call him purposeful instead of impatient! But, it was a test for me at times, as we then didn’t hold hands on walks as often as I would have liked. I suppose when I reflect on moments that I loved the best, at least those which can be mentioned publicly!, I am transported to places where we traveled and spent time. I remember our being in Hawaii early on in our marriage with our four parents. The helicopter over the lava flow, swimming with the dolphins, diving among tropical fish, jumping into enormous waves, and watching the waterfall…it was splendid. We branched off of a business trip of Craig’s and did a weekend on the Outer Banks of North Carolina by Cape Hatteras, where he got his Native American flute. We celebrated our 5th wedding anniversary at Lover’s Point near Monterey, California. We traveled to China and Florida to visit family. Later in our marriage was Israel and spending days together at the Bahá’í Shrines praying together. We recognized at that time that Craig was feeling very challenged spiritually, desperately wanting to feel more connected to God. The trip got him started on that reconnection, and the journey with cancer completed it. We began our marriage with the struggle to re-balance after our need to be together collided with the speed at which we connected after Craig’s separation and divorce. The whole family had healing to do. Craig and I made the conscious choice to not have further children, although at times it was a sorrow to not have one together, particularly for me. We’ve done our best to love each other’s children, and that’s been good. When the first grandchild came, Karida, we were delighted to be together as grandparents. When the second one came, Aidan, both Craig’s son (the baby’s father) and Craig were dealing with brain tumors, and it was more challenging to spend time together and to bond. With the third one, Giuliana, Craig is with her spiritually, but I’m being Nana “by myself”. Craig being gone as a grandfather for both the current and the future grandchildren is a major sorrow for the kids as well as for me. We ended our physical marriage with the family hugely healed, but with the test of Craig’s illness. We did our best as a couple to keep our marriage strong during cancer’s disruption. At times, I felt more caregiver than wife…but then taking care of his needs was part of being a wife. Throughout his cancer journey, as best as we flexibly could, we still dated, we still made love, we still consulted, we still prayed, we still moved forward with our spiritual development as people, and we still served others to the best of our ability. I then did the final physical service to him of helping his close friends with his body washing and shrouding and letting him go into the ground. Now he’s spiritually surrounding me, in guardian angel/protector/helper mode…just as he was here, but so much more powerfully. I have moments where I feel as if I’m having a normal conversation with him. There are times when I’m floating in the ocean and feeling surrounded by sunlight that I feel the light of his soul very present. Then at other times, my own grief or periods of intense emotions get in the way of feeling him near. It’s all part of the adjustment process. From a Bahá’í perspective, Craig and I are married for all eternity…our souls are connected because of the bond of love and friendship between us. From a family perspective, we are all adjusting to what this means. Some days I feel as if I’m still part of the blended family, and some days I wonder whether the rest of the family thinks I’m still part of them. I wonder about blood connections, marriage connections, love connections. Craig asked me to do my best to stay connected to his family, I promised to try, and I’m doing my best. Craig and I talked about whether I would re-marry (the Bahá’í teachings allow for this). We agreed to make no promises on the matter but simply to trust that the future would unfold and be clear as we went forward. He really wanted to ask me not to, though, which was simply a great testimony to how happy we have been together. I’ve been sad this week as our anniversary approached. It’s hard doing an anniversary “alone”. I was determined not to tie grief to certain calendar dates…and here I am doing it. It’s good for me to take this time to grieve, though. It’s also good to take this time to celebrate the really extraordinary accomplishment that our marriage has been and will continue to be. I’m grateful for the family and friends who encouraged me to do this writing. Much love, Susanne p.s. Here is my funeral tribute to Craig in case you missed it: www.claricomm.com/SpouseTributetoCraig.pdf FROM OUR WEDDING PROGRAM: Honoring Their Union: Susanne and Craig United in mind, heart, and soul, we affirm that the intent of our relationship is to create an extraordinary family. Our commitment is to: · Treat each other with love, honor, respect, courtesy, and integrity. · Support and encourage each other's personal growth and transformation and the transformation of others. · Honor and respect our own and each other's physical, mental, emotional, and spiritual needs and assist each other in meeting those needs wherever possible. · Fully express and share all aspects of our selves and our lives. · Deal with issues that arise as soon as possible. · Be fully conscious, fully present. · Maintain some time alone. · Cherish, honor, and respect our children by nurturing bonds of communication and love. · Build and maintain loving and open relationships with all family members. · Enrich our lives with separate and mutual friendships. · Pray separately and together daily. · Read and deepen on the Bahá'í Writings together daily. · Be examples of service to ourselves, each other, our families, friends, and communities. · Be playful, have fun, and incorporate humor into daily life. · Act with integrity in all things, particularly in our finances, our work, and our service commitments. · Enrich our lives with the arts. · Be patient, accepting, and nurturing, maintaining the constancy of our relationship through times of adversity and when we are not being our best selves. Fill Thou, O God, our homes with harmony and happiness, With laughter and delight, With radiant kindliness and overflowing joy. That in the union of our hearts, Thy love may find a lodging place And Thou Thyself may make this home of ours Thine own. ~ George Townshend

Susanne’s New Blog – August 13, 2009

2009-08-13T11:23:00.000-07:00

Shortly after Craig’s soul flew to the Kingdom of God, the family agreed that I should stop posting messages to this blog. However, recently through an intuitive friend, Craig asked me to keep blogging so that all those who had been reading of our journey would know how I was doing. I’ve agreed. However, I’ve decided to set up a new blog instead of continuing this one.

You can subscribe to receive postings via email or simply check the blog on occasion. The link to Susanne’s Boat Ride is www.myboatride.blogspot.com. You’ll have to read the first posting to know why I picked that name!

Love,

Susanne

Michelle's 1-Month Tribute to Her Dad, August 1, 2009

2009-08-01T17:18:00.000-07:00

Dear Friends:

We decided as a family to end blog postings for Craig's blog, but sometimes there are worthwhile exceptions! For those who are wondering, I'm doing well...having a granddaughter on July 16th helped! My emotional experience is much like Craig's daughter Michelle describes below...except that I also have the "practical triggers" of emotion going on while doing thank you notes, reading condolence cards, and handling the myriad of details of completing the affairs of someone's life. Craig's bedroom is now back into being a prayerroom and is far more special for his time spent in it. I'm grateful for the comfort of having his soul nearby. I hope you'll appreciate Michelle's reflections.

Love, Susanne

Reflections on the life and death of my dad

It’s the one month anniversary of my father’s passing and I had the bounty today of reliving the whole story for a dear friend of mine, and decided that it was time to write about my experience for myself and anyone else for whom this will touch.

I will start recounting my journey by saying that I am comforted by my belief/certainty that my dad is not gone – he is just in another spiritual world, but that (as I tell my daughter) he can still see me with “special eyes”. Therefore I still have my father – I will just have him in a spiritual sense until I join him one day in that other world. It is hard to realize that I won’t see him physically, and that will always be painful (especially at significant occasions, or maybe just silly or inconsequential ones..) but I have to say that his death was such a blessing…a blessing to have had the healing time we all needed in our relationships with him and each other, a blessing to have had him as a father, a blessing to have been with him at his deathbed while he moved to the next world, a blessing that he did such an amazing job of dying…

This is not something that we tend to talk about – dying well. But since all of us have to do it at some point or another, we might as well do it well. And my dad did, and his journey to this point was incredible.

As you probably know my dad was diagnosed with cancer a few years ago and journeyed well with it (he refused to call it a fight because that denotes a struggle/war and he was peaceful by nature). He was strong, courageous and radiant through the whole process. He spent MANY hours in prayer and meditation and was content with God’s plan for him. I use the word content when describing him many times and what I mean by it is not happiness (who actually is happy to leave behind one’s loved ones?) but a inner serenity/calmness/peace that God will provide and protect him and his loved ones. When word came from his doctors in February that there was nothing more they could do, he was content and spiritually radiant. Of course he was sad, sad for what he would be missing here: being with his children, seeing his grandchildren grow up, having more wonderful years with his wife, being able to have more years of service to others (something that always gave him great joy). But since the verdict was given he was determined to die well.

Many times people die with things unsaid, unresolved, unfinished. My dad (and all of us) had the opportunity to say what we needed to say, resolve things that were not, and finish every thought, emotion, and story. In the months after my dad’s prognosis was considered terminal, he went through a spiritual transformation – something that he had always yearned for. He had always yearned to feel close to God, to feel in His embrace, to express himself emotionally and spiritually to those around him – yet he always felt like he got in his own way. He had a hard time expressing his feelings and never truly felt the connection to God the way he wanted to (even when on spiritual pilgrimage to the Baha’i Holy sites). In the remaining months (we had about 5 months with him as he was dying) he was finally able to express what he wanted to, he became physically affectionate (the first time in my life that he stroked my back or freely held my hand), much freer in saying “I love you”, “I’m sorry”, and “I’m proud of you”. These last two were for my brother who had been estranged from my father for many years. They were finally able to make amends and truly love (or at least finally express the love they always had) for each other after 15 years of misunderstanding and pain. This healing was so important to them and to all of us – and my dad made sure to make it happen. Each of us in our turn (my sister and I, my mom and others) also spent time clearing up old issues, forgiving him for past things (no parent or spouse is perfect), asking for forgiveness for things we had done, etc… There were many tears but at least we had the chance to do these things while he was still with us. And that forgiveness allowed me to truly let him go when the time came…

Many people become bitter, depressed and sad in their final time here on earth, but he was determined to die with “his eyes wide open”. Spiritually he was so radiant and content in his final months, weeks and days. At a special “going-away” party that we held for him where 300 people attended, he was the one consoling everyone who came to see him. He was content, he was thanking them for all the things they had done for him over the years, he said he would miss them and would pray for them from the next world. I cannot really explain it because it seems so surreal that he would be so calm, in a world where people fear death or can’t bear to think of it. But he knew that he would not be going into oblivion, he would be in the next world, which as Baha’is we believe is as close to us in this world, as we are to a baby who is still in the womb. He would not be able to physically touch or speak to those whom he loved, but he would be near and reunited when they joined him in the next world.

In his final few months he increasingly lost his ability to walk and speak (the effects of the brain tumor) but his eyes still sparkled. He did everything he could to not be a burden on others (though of course he was dependent on us (mostly my step-mom) for care). He would get frustrated, especially when we would try to get him into bed, help him eat, etc.. (things he’s been able to do since was a child!) but he would never take it out on anyone or really get grumpy. His greatest frustration came from not being able to express himself in words anymore (now that he had gained the ability to finally express himself!) but as his speech diminished, the expressiveness in his eyes got stronger. Until finally on his deathbed his eyes were the only way he could communicate.

In his last week he had chosen to stop taking his medication and to stop eating – this is not uncommon for someone who is nearing death as they lose interest in these things – and my step-mom honored his request (which must have taken great courage/detachment on her part!). A few days later it seemed that his hours were numbered and all of us kids assembled (I drove in from Dayton, Ohio, my sister from Washington DC and my brother lived locally). When I came into the room I remembered being struck by two things 1) how still his body was (he was not able to move any of his body anymore) 2) how expressive his baby-blue eyes were. He was clearly with us and was very “present”. He was not agitated, he was not in pain, he was – as always - content. I was very sad when I saw him – it is very tough to see a parent (especially one who is so young) in such a state. I held his hand and cried for a long time.

We (myself, my sister, step-mom and another dear friend) ended up having the bounty of being with him for 2 days and were there at the amazing moment when he passed. It was such a spiritual moment though physical all at the same time. It was as if we could feel his soul moving on, while we were there to hold his hand and cry, and sing him to the next world (his greatest joy was music!). I feel blessed to have been able to “birth” him into the next world. I was originally worried that I would have a hard time of it. I’ve never been near someone who is dying nor had to deal with death much in my life. But being able to serve him in those two days was such a blessing. I sat with him, sang to him, held his hand, prayed with him, laughed with other people who were caring for him, wiped his forehead. And he died with a smile on his face…

I will always miss him and will always keep his memory alive by telling stories about him to my kids. About how he would sing every day, how he played the guitar, flute, dulcimer and recorder. How he was always generous with his time, energy and resources. How he showed his love through his actions and would always do everything he promised to do. How he was watching his grandchildren grow up from the next world and that he loved them and were proud of them. That he was always working towards creating unity between people, creating positive relationships, creating better communities. How, as his headstone says “He lived to serve.”

********************************************************

In this last month since his passing, I have been doing better emotionally than I expected – in fact, it seems that some of my dad’s contentment has rubbed off on me. Not all the time though: I have times where I am sad, where I cry, when I am upset about what we won’t get to see him at (my daughter’s next birthday, my sister’s wedding). But on the whole, when I think back to those last days and hours with him, I am happy. Sometimes I feel guilty saying that, but if this journey allowed my dad to have the spiritual transformation he always wanted, the healing our family needed for so many years, and the blessing of peacefully helping him into the next world, then why shouldn’t I be happy? Death has to happen to all of us, and his could not have been more amazing or more of a blessing for those he loved. True happiness is spiritual and all of our family (now in two different worlds) have been blessed with what we needed for our spirituality and personal growth. And when it comes down to it, the spiritual life of our souls is what matters in the long run, long after our physical bodies return to the earth.

I know my dad will always be with me and always loving me and my whole family. I miss you Dad...

Michelle (Farnsworth) Tashakor

Graveside Service – Lake View Cemetery – July 3, 2009

2009-07-07T07:01:00.000-07:00

The morning of the service, I awoke to the sound of rain at 6 a.m. The forecast was for sunshine, so we had not ordered a tent covering at the graveside! I sent up a quick prayer for the storm to wander off, and at the time of the service, the skies were just overcast but not raining, thankfully.

Craig and I had not particularly planned the graveside service other than choosing Dustin Dornbrook to read the Bahá’í Prayer for the Dead. When it became clear that there would be close relatives unable to attend the funeral and only be at the graveside service, I delegated planning of the service to Michelle and Leah. They asked people to sing and play music, which was beautiful. There were additional prayers/comments offered spontaneously as well. A number of friends were also able to be there who had missed the service the night before.

I had a few moments of private farewell at the casket at the end. We all chose to leave before the burial…enough images in my head without that one added as well. You can see photos of beautiful and historic Lake View Cemetery at this link: www.lakeviewcemetery.com.

The video recording of the graveside service is attached at the end of the one of the funeral service, if you wish to watch it. Go to www.dejohnfuneral.com and click on Craig Farnsworth’s name. The video is under the Memories link.

As far as I’m currently aware, this posting is the completing one for Craig’s blog. It’s been a blessing to be in touch with so many people globally through this medium. Your prayers and spiritual/emotional support have meant so much to us. Watch in the future for our book on empowered ways to journey with cancer. Please keep me and our children in your thoughts and prayers as we go forward.

Love,

Susanne (susanne@marriagetransformation.com)

Honoring/Funeral Service Day, July 2, 2009

2009-07-06T13:33:00.000-07:00

In the morning, Holly’s daughter Renee drove me to the cemetery to arrange for Craig’s burial on Friday. We just had to go to the office, not the family plot, so few emotional triggers – more like a business transaction.

A team of people began doing setup at 3:30 p.m. at the Slovenian Society Home where we had rented a hall for Craig’s Honoring Service. He didn’t like the word “funeral”, even when I pointed out that the word “fun” was in it! Since our focus was on honoring him as a person and his service accomplishments, “Honoring Service” was what we chose to call it. I was so grateful to have trustworthy friends and family doing those tasks so I could relax and not arrive until time for things to begin at 5:30 p.m. Craig, I, and the kids had decided not to do a formal receiving line. However, there was often a line that formed near me when I stood still! It was wonderful to greet so many dear friends.

Knowing that I would not be able to write effectively about Craig at the time of the end, I began writing my tribute to him months ago, read a draft to Craig then, and then edited it every now and then since. Members of our Toastmasters group greeted me before the funeral (they had canceled the meeting that night to be there), and I admitted that I hadn’t practiced my “speech” out loud or memorized it. They assured me no one would be evaluating my grammar or delivery that evening! Here is a link to the document of what I said: www.claricomm.com/SpouseTributetoCraig.pdf

Craig’s three children did a tribute to their Dad – with eloquence from the heart and many tears. We went through the family photos months ago, and they put together a wonderful slide show to display to everyone after they shared. (You can see it on the video – see details below.)

Craig’s best friend Nik Tressler had been working on his tribute to Craig for months as well. He had the opportunity to read it to Craig on one of his many visits to our home. I really acknowledge Nik for being open with his love for and grief about Craig. He arrived at the lectern with a roll of paper towels in hand for his tears! You can read Nik’s tribute to Craig at this link: www.claricomm.com/FriendTributetoCraig.pdf

At the end of the service, the pallbearers carried Craig out. Unexpectedly, the funeral director invited me to accompany them down the aisle – yet another difficult “good-bye”. I wrote a note to myself the following morning: “How many times and in how many ways will I have to say good-bye to him?”

The funeral home is testing a new service of taping and webcasting funeral services. Since this option is new for them, they offered to do Craig’s for no charge, and Michelle and I instantly agreed. With close family and many friends unable to attend due to pregnancy, short notice, and it being a holiday week, we were grateful to offer this and thereby include more people in viewing it and reaching “closure” with Craig’s passing. There is a link on the funeral home’s webpage - www.dejohnfuneral.com - to information about Craig and his honoring service and graveside service that will be available for quite a while. For only the next 90 days, however, you can watch a video of the funeral/honoring service and graveside service. Craig Farnsworth’s name is listed on the home page, and you link to all information from there. The written program is at the View Obituary/Notice link and the video of the service is at the Memories link. Please advise the funeral home or their video service if you have any technical difficulties (in other words, not me!)

The service began at 7 p.m. and was followed by refreshments, so it was around 11 p.m. by the time Holly and I got home. Michelle and Leah dropped off memorabilia and other things by midnight. So, Holly and I got into bed by 1 a.m. A very late night! But a blessed service for all of us.

Love,

Susanne p.s. Bless my computer support folks who have been teaching me how to do multiple complex maneuvers on the road that are allowing me to do this stuff from Mom's in Canada! Yay!

Preparation Day – July 1, 2009

2009-07-05T18:02:00.000-07:00

Our friend and hospice art therapist, Barbara Trauger-Querry, arrived shortly after Craig passed. She helped guide the funeral home personnel and us through how to respectfully have Craig leave our home, and she supported us in our choice to watch him carried out. She had them leave his face uncovered so we could still see him. It was very emotionally wrenching to watch him physically leave our home for the last time.

I had done an extensive notification matrix, so we all began making the calls and sending the emails to let people know what had happened. With the funeral scheduled to happen in only about 36 hours so that burial was completed promptly (encouraged for Baha’is since we don’t embalm and because of the July 4th holiday), our pre-planning was a huge benefit.

Michelle (Craig's eldest daughter) and I only needed to have a brief meeting with the funeral home to finalize arrangements. The facility was on standby and then ready to go (the funeral home wasn’t large enough, so we had to rent a hall in the community). We already had the program created, so it just needed quick editing. Friend Janet Lyon was the logistics coordinator and already had an extensive team of people lined up to do refreshments and facility setup. I had the memorabilia for display collected and organized. We knew where to copy the handout of the program and which two people there knew how to fold and staple it properly. Craig had chosen all the participants, so we just needed to confirm their availability and willingness. All of us responsible for doing tributes as part of the program had already completed preparing them. There were enough last-minute things that came up to keep us busy in the middle of our exhaustion, that we were very grateful for Craig’s and my foresight in planning ahead.

A few posts ago, I mentioned a quotation that included the concept of things lining up in the hours of waiting. By the time Craig passed, almost everyone that he had designated to do primary tasks was available to participate…something that had not been true in the days and weeks prior to July 1-2. Nor would it have been the case by July 3-4.

It is a Bahá’í practice to have a ceremonial body washing and preparation for burial done by close friends and family, and we did this for Craig in the evening. After the morning experience of seeing his body leaving, I had very mixed feelings as I headed to the funeral home. The men who agreed to help me were Nik Tressler, Rick Eastburn, John Cunningham, and Ban Twaddell. Of the five of us, only Rick had done this before! But, everyone turned out to be wonderful companions for Craig and I in this process. I had read some general instructions and gathered the appropriate materials months before, but this was a very new experience. We prayed before entering the room and prayed before we began. I played some of Craig’s favorite music on a CD player. It was possible for me to participate in the washing, but I chose not to. The guys carefully and respectfully washed him head to toe. The funeral home had already shaved him, but the guys also shampooed his hair, and I dried it. Over recent weeks, his hair grew longer and very curly, and I cut a lock of his hair to keep in a pouch that our friend Cindy Hall sewed for me for that purpose.

After the washing and drying, I placed a gold ring on Craig’s right ring finger that was engraved with: “I came forth from God and return unto Him, detached from all save Him, holding fast to His name, the Merciful, the Compassionate.” (Photo at: http://www.bahairesources.com/products.php?id=3140 ) Rick took attar of roses (rose oil) that he has carried to various holy places in the world and sprinkled some on Craig’s body. We then needed to shroud his body, which is essentially wrapping it in cloth. I could use silk or cotton and chose cotton, which seemed more a match for Craig. I chose to use royal purple king-size sheets that matched the amethysts in our wedding rings. Cindy had taken the pillowcases and cut and sewed them into ties that we used to then wrap around Craig to secure the shroud and Craig’s arms crossed over his chest in place. Craig wanted to be buried with his prayerbook that contained petals from the Shrine of Bahá’u’lláh and a few other special items, so we tucked it inside the shroud. I pinned my “I Love My Husband” button to secure the flap of cloth on his shoulder. Rick sprinkled more rose oil on the shroud. We ended with a further prayer followed by song with me holding my hands on both sides of Craig’s shrouded head. I had invited Nik to lead us in song, but he was too emotional to do so. I then led us all in singing a Bahá’í prayer: “God Sufficeth”. At the end of singing, Ban began to laugh, and explained that often over the years Craig’s friends (usually tenors) got into difficulties singing when they asked Craig (a bass) to lead the singing. They had the opposite problem with me leading! Good thing I’m alto and not soprano!

I left the funeral home feeling so much more peaceful and happy than I had in the morning. Our friend Melodie Yates spent the night with me (the kids all moved over to be together at Dave’s home). She assured me that I didn’t need to automatically wake to check on Craig but to delegate “caregiving” duties to her. I was able to sleep 7 straight hours…what a blessing.

Love,

Susanne

The Final Stretch – June 30-July 1, 2009

2009-07-05T17:50:00.000-07:00

Since it’s now July 5th, I’m looking back and the details are already blending and fading, but I want to share some about the final hours of Craig’s life here on this plane of existence.

We had occasional times of men visiting Craig and being with him for periods of time during the day or evening, including Craig’s son Dave. However, at night it was women accompanying Craig. We referred to ourselves as midwives (Michelle, Leah, Holly, and I) and it felt very much as if we were creating Craig’s room as a warm, loving, caring space for him. We stroked his head, massaged his feet, held his hand, put cold cloths on his forehead, adjusted his covers and pillows, and saw to his comfort as much as possible.

As you know, we stopped giving Craig morphine on Monday evening. He stayed essentially pain free in his head from then on. However, on Tuesday evening various issues began to arise. He seemed to be having more active seizures/tremors happening that caused him to be reaching for his face and head and potentially hurting himself. His legs and hips were more restless. We had Tammy, one of the on-call hospice nurses come to the house to help us assess how to ensure Craig was safe and as comfortable as possible for the night.

Tammy helped us pad all around Craig with towels, sheets, and blankets. We put a thick comforter on the floor in case he had a seizure bad enough to fall out of bed. We put a sock on his hand to protect him from scratching his eyes. She gave us normal saline to gently put in his eyes, as dehydration had left them dry. She gave us swabs for his lips and mouth to soak in his favorite liquid (Mandarin Orange Spice tea). We then met as a team to discuss how to handle the nighttime issues that could arise, how to recognize signs of death, and what to do when he passed. We then felt more confident and empowered by having specific tasks to do.

As Tammy was finishing up, we received a telephone call from Debbie Boyd-Tressler, who had been intuitively communicating with Craig. As you know, we had backed way off from interacting with Craig the previous night – little touch, very quiet, and so on, even though his eyes were often open. We were concerned about interfering with his process of letting go of this world. Debbie shared with us that there was nothing we could do that would interfere with his process, that he was filled with joy, and that whatever would make us happy was great for him. So, we touched him, played music, sang, prayed, and interacted with him all night! What a joy!

Once Craig had fluid in his eyes, he stopped reaching for them. We figured out that his hand was reaching for his head because his hair hadn’t been washed since Sunday morning and his head was itchy, so Michelle used the no-rinse shampoo and got his head clean and “scratched”. He then calmed down and quit reaching for his head. His auto-adjusting air mattress had been deflated since the power outage, and sciatic pain was reoccurring (he hadn’t wanted the mattress turned back on). Once we got it restarted and pain ointments rubbed into his back and hip, the leg and hip restlessness stopped. The major seizures we expected at the end did not happen, and all our ministrations calmed his whole body down. It was an amazing experience in effectively reading and responding to his body language!

I had a long stretch of hours with Craig by myself. As his breathing began to change around 4 a.m., I woke up Holly and then the girls and we spent a couple of hours with him praying and playing music. We put on the CD of Craig’s music and sang along with it. Kim Klein, our primary hospice nurse came in before her shift at around 5:30 a.m. and checked him. She had to leave at 7:30 a.m. for a staff meeting and told us that it would still likely be a few hours. So, the girls and I went to bed for a bit and left Holly at his bedside.

Around 8:30/8:40 a.m. Craig’s sister called and woke me, so I checked on him and was assured he still was “stable” and not yet exhibiting the end-of-life signs and so went back to bed. Within minutes, I was called to immediately come to Craig’s room. Instead of a gradual stopping of breathing, his heart and breathing seemed to simply stop, and we noted his passing around 9 a.m. We also noted how appropriate it was that he died on July 1st, Canada’s independence day, since I was born and raised there! We then spent about 30 minutes praying and saying our goodbyes. We called the funeral home and Kim to come. Craig’s son Dave headed over to the house to have his time to say goodbye. He had been in to visit each day but left the night shifts to us. He arrived expressing how happy he was that his Dad was now free.

Love,

Susanne

Craig Has Passed - July 1, 2009

2009-07-01T12:07:00.000-07:00

This is Leah, Craig's youngest daughter, writing on behalf of Susanne. As of 9am this morning, July 1, 2009 Craig's soul was finally free from his body. He was not in pain and the whole experience was very peaceful and of course musical and prayerful by those of us at his side (Susanne, Michelle, Holly Timberlake, and me). Susanne will be writing a more thorough depiction of the experience when time permits. I am writing to pass on the funeral details.

Dear Friends:

The following are the arrangements for the honoring (funeral) service for Craig Farnsworth:

Date: Thursday, July 2, 2009

Visiting times with family:

Before service: 5:30 – 7:00 pm

After service: 8:30 – 9:30 pm

Time Service Begins: 7:00 PM

Place/Address:

Slovenian Society Home

20713 Recher Avenue

Euclid, OH 44119

Directions:

I-90 to E. 200th Street, going north. Turn east (right) off E. 200th St. immediately after Discount Drug Mart onto Lindbergh/Recher. The street dead-ends at the parking lot for the Home. There is not a clear sign for the building until you enter the parking lot.

Special Notes:

Chairs will be set aside at the front for family and readers. Light refreshments and visiting with family will follow. Please contact Janet Lyon at (216) 691-9540 if you would be able to arrive early (4:00 pm) to help with set-up.

You can visit the funeral home’s website at www.dejohnfuneral.com after 7:00 pm tonight for further information, to leave a message, etc.

Graveside prayer and burial and will occur the following day July 3, 2009 at:

Lakeview Cemetery

12316 Euclid Avenue

Cleveland, OH 44106-4393

Please gather at the Euclid Gate at 10:00 am for procession to burial location. (Cemetery plot is at the corner of Foothill Road and Ravine Road - Section 42) (Maps available at the funeral)

Donations are preferable vs. flowers and can be made to:

Baha’is (only) may donate in honor of Craig Farnsworth to:

Baha’i National Fund

Baha’i National Treasurers Office

1233 Central Street

Evanston, IL 60201

www.bahai.us

All may donate in honor of Craig Farnsworth to his and Susanne’s cancer support center

The Gathering Place

23300 Commerce Park

Beachwood, OH 44122

Online donations: www.touchedbycancer.org

Donations can also be made for research through the:

National Brain Tumor Society

East Coast Office

124 Watertown Street, Suite 2D

Watertown, MA 02472

www.braintumor.org/fdonate/

If you would like to send flowers, the funeral home would prefer that flowers be delivered to the funeral site – the Slovenian Home -- rather than to the funeral home. Ask the florist to deliver after 10:00 am on Thursday July 2nd only. Do not send flowers on Friday.

Slovenian Society Home

20713 Recher Avenue

Euclid, OH 44119

Update on Craig – June 30, 2009

2009-06-30T13:13:00.000-07:00

We had no power for about 3 hours this morning after a severe thunderstorm, and no Internet for another 3 hours or so after that, so I’m just now able to be in communication. Gratefully, our next-door neighbor Frank Rodgers is a whiz on sorting out technical issues and helped to get our wireless network back up and running.

This morning was a repeat of yesterday morning – at 4 a.m. the end-of-life symptoms kicked in and we thought that was it. However, although his blood pressure is running approx. 60/40, his heart rate is staying up around 130 beats/minute to compensate. Until his heart rate drops, he is sustaining life. Craig’s eyes are still staying open continuously, fever of 102, and mild seizure activity. He is still doing some communicating with us with his eyes and eyebrows. We stopped the morphine last evening when Craig began to seriously resist the doses. He does not appear to be in pain any more, and we have not needed to resume them.

Leah, Michelle, Holly, and I did the nighttime and morning shifts and managed to get some sleep each. Last night we left Craig in fairly peaceful state, doing little to disturb him. Today we have done some praying and singing at his bedside, alternating with peaceful periods.

We are reflecting on the way this process is similar to baby birthing – predicting timing, pain, and moments of uncertainty are all parallels.

We have also been learning from our hospice team and each other about how to interact respectfully with Craig, telling him before we touch him what we are going to do and asking for his “yes” or “no” via eyebrow movement if there are choices. When someone comes to visit who has not seen Craig one-on-one, or when it’s clear that I need one-on-one time with Craig, there is a natural flow out of the room to give the space and time needed.

I’m noticing that at times I’m trying to say reassuring things to Craig, like it’s okay to close his eyes and assuring him that he’ll be fine and the angels are with him. Then I pause and realize that he is far more in tune with these things than I am!

Love,

Susanne p.s. Someone commented that it must be difficult to do these postings at this time. Actually as a writer, it is helping me to process and accept the experience, and we are so grateful that it has helped us create a community that is praying for us and supporting us. Craig and I are also deeply committed to contributing to others, and we feel that this communication is fulfilling that commitment.

Update on Craig – June 29, 2009

2009-06-29T20:01:00.000-07:00

From about 4 a.m. on all day we expected Craig to pass. Nancy (sister) spent the night with me and all day here. His blood pressure was very low and all signs were that he was close. His children all arrived by the afternoon, and it seemed as if he held on for them. However, he is still with us. He is dying with his “eyes wide open” though – very conscious and aware all day (See blog from April 22). He communicated with us with his eyebrows, eyes, and body movements quite well. Our hospice nurse, Kim, was with us most of the day. Our music and art therapists came and spent time with us, with Ginny singing, and Barbara helping us understand the process. Craig began to refuse the morphine during this evening, but he does not seem to be in pain. There have been continuous apparent “mild” seizures happening. We are now doing shifts with daughters Leah and Michelle and Holly and I. Nik just left. So, we are quiet and peaceful and still expecting Craig to pass tonight. There’s probably more to say, but that’s all I can manage at the moment.

Love,

Susanne

Snoring the Day Away – Maybe! – June 28, 2009

2009-06-28T17:25:00.001-07:00

Holly and I more or less managed the shifts last night. Craig got agitated at 4:30 a.m. or so at the end of my “on-duty” time. We noticed times when he would stop breathing briefly and that it didn’t seem as if the morphine was keeping up with the pain. Of course, we also began wondering whether it was “the end”! (It wasn’t.) The hospice nurse visited and helped us work out an increased dosage with the doctor. That has then kept Craig comfortable today…although it means often hourly medication. We then continued to do shifts until mid-day.

A friend brought food in today, so for those who are concerned about my well-being, I’m eating well, I promise! Deb Boyd-Tressler (Niks’ wife) came for a while this afternoon so I could nap, and she spent time intuitively communing with Craig. She helped me learn his body language for when he is awake and when he is asleep, even though he is “snoring” away. It’s funny that he hasn’t snored throughout our marriage (a blessing!) and now here he is doing it at the end! It’s actually simply congested breathing. Deb said that Craig is so busy visioning internally that he does not open his eyes, even when he is awake. He was able to let Deb know that the morphine is helping him, and we should continue it.

My challenge this morning was coming up with enough help to be able to have someone awake with Craig on a 24-hour basis. The solution at the moment is that my sister-in-law is coming in from Pennsylvania for the night tonight. Her husband may come in after that if we need help. Tomorrow the nurse will reassess Craig to see if having continuous hospice care is appropriate – that assessment will now happen on a daily basis as well.

The day has been gorgeous – sun and breeze through the house all day. We are playing the Long Healing Prayer for Craig periodically (www.projectmelody.com) and other music and in between enjoying the quiet and holding his hand.

We appreciate all the loving and encouraging comments on the blog and on Facebook, and we know that there are many others out there silently praying for us. We feel well accompanied!

Love, Susanne

Pain Starts and Friends Help – June 27, 2009

2009-06-27T18:16:00.000-07:00

Nik Tressler and I spent the night with Craig. He was peaceful, but kept twisting and turning in the bed until he looked like a pretzel. But, we kept putting pillows around him, and as long as he seemed comfortable, we left him be. The hospice nursing assistant straightened him out while bathing him, but he seems to still want to curl back up. During the day today, it has been clear that he was beginning to experience pain in his head. We are dependent upon body language, but grabbing his head and rubbing his forehead seem like clear signals! The hospice nurse visited and confirmed that we should begin morphine for him. We started with a low dose spread out at a four-hour interval, but we are now on a higher dose and at every two hours. He’s running a fever of a bit over 100 F. The congestion is very entrenched in his chest. We have seen Craig’s eyes briefly a couple of times, and he does seem to understand us when we talk to him.

A couple from our support groups – Cheryl and Les – stopped by this afternoon. Holly Timberlake joined us later on this afternoon. She and Nik did spiritual visualizations for Craig. She has also recorded one for me that you can listen to on her website, www.todaystapping.com. See the menu on the right side for Susanne’s Journey below the link for Craig’s Birthing Meditation. Holly and Nik sent me upstairs to rest and listen to it while they helped Craig. Very helpful! Nik has just now gone on home, and Holly and I will do the night shift. We’ll have to set the timer for every two hours for the medication, and we are planning to do alternating three-hour shifts of sleeping and waking to keep him monitored.

Love,

Susanne

Different Today – June 26, 2009

2009-06-26T15:25:00.000-07:00

After a full, alert day yesterday, Craig went soundly asleep at about 10:30 p.m. last night and slept all night. However, this morning when we tried to wake him, it was clear that it wasn’t really possible to arouse him. He is not in a coma and still responds with facial expressions and noises to the unfortunately necessary things we are doing to him (enema, catheter, bathing, etc.). But, he does not open his eyes and isn’t generally interacting with us beyond a random “okay” once in awhile when we tell him something.

Full-time hospice care ended today after it was clear that Craig was somewhat stable. We still have 24-hour access to the on-call nurses, and he will receive visits all weekend, but friends and I will be monitoring him for challenges. His chest congestion keeps coming and going, as his heart is now apparently too weak to effectively remove fluids from the lungs. Right now, he is in minimal pain as far as we can determine by body language. If that changes, he’ll be assessed and probably medicated. Otherwise, he is now on no medications, food, or liquids.

Barbara T-Q, our art therapist, came by this afternoon and glued the last poem he did in his art journal. We had hoped he’d be able to paint today, but that activity now seems to be done. I’ve played music and prayers set to music for him off and on all day…the same pattern we had in previous days. It’s a beautiful and quiet day, temperature in the 70’s, with the windows open to a light breeze. I now have a desk set up outside of Craig’s room with the same view into the trees that he has from his room. It’s been harder to focus today on doing anything though…too restless to settle down for much of anything for very long.

Thank you all for your prayers for God’s will and Craig’s peaceful transition (and that we have the strength to effectively handle any last minute adventures!).

Much love,

Susanne

p.s. We also appreciate your prayers for daughter Jennifer as she approaches the birthing transition with our granddaughter on July 16th.

Craig Amazes Us Today – June 25, 2009

2009-06-25T18:14:00.000-07:00

Hospice and I are somewhat in crisis responder mode – suddenly stopping steroids and anti-seizure meds without tapering is not the usual pattern. So, all night and day we have been wondering what consequences were going to emerge. Instead, Craig was awake and alert practically all day from fairly early in the morning. Lately he has been sleeping most of each day, so this was a big change. His speech was clearer and he actually came out with phrases and sentences instead of just an occasional word. The congestion in his lungs improved, and the coughing significantly decreased. His kidneys were functioning better. His appetite was good, too. So, quite baffling, but very nice!

Craig is now on a soft diet that can be easily swallowed, so I made applesauce this afternoon, one of his favorites. For the first time in a couple of decades – at least – I also made some pudding so he would have a non-dairy version (less congestion). So, we are experimenting with what he can eat and what tastes good to him.

Tonight Craig tried to communicate some more complex matters, much to our mutual frustration. I understood from him that the angels are still doing their “pre-visit” and “preparing” him. They helped him feel better today. And they want us to do three things. Unfortunately, that’s where the communication broke down and all I got was “Let us begin”! The angels are apparently still the same crew, however at some point recently Craig also saw ‘Abdu’l-Bahá (son of Bahá’u’lláh, the founder of the Bahá’í Faith).

So, we have had brief visitors, read, listened to music, interacted with the hospice nurses, reaffirmed with Craig that he wants to continue to stay off the drugs, and wandered through the day. I got out to the grocery and post office and had a nap in the middle as well. It was 90 degrees, so we were shut in the air conditioning all day and then we turned the computers off for a couple of hours while thunderstorms came through. The night nurse is now on duty, and the plan is for me to sleep upstairs again and leave her to help Craig. I got up once last night as needed, but otherwise slept well.

Each morning, our lead nurse visits and we will re-evaluate our need to have someone here continuously. It is too soon to stop it yet. One day at a time…

FYI, some have expressed interest in the quotation I recently posted about Bahiyyih Khanum. Here is a link to the whole article about this amazing woman.

www.claricomm.com/Bahiyyih_Khanum_Tribute.pdf

Love,

Susanne

Medications Stop; 24-hour Care Begins; June 24, 2009

2009-06-24T15:59:00.000-07:00

For the last while, Craig’s medications to keep treating one symptom or another kept increasing, instead of decreasing. When the proposal came to us this afternoon to add one more that would keep his lungs and heart functioning, we entered into a consultation with our hospice nurse. Craig is on a high enough dosage of steroids at this point to be very clear in his understanding and clear in his brief responses. He has emphatically indicated that he wants all primary medications stopped.

We were also at the point today where he could no longer safely swallow pills and we would need to crush them and put them in applesauce, pudding…

Hospice licensed practical nurses will now monitor Craig on a 24-hour continuous care basis here at the house to watch for and help us deal with seizures, brain swelling, pain, and so on. We have plans in place to respond as appropriate and needed. He is okay with us administering medicine for pain and to calm his coughing – comfort management only.

He spent the last 2 hours listening to spiritual music and is now peacefully resting. Because he’s already had his full dose of steroids today and his morning anti-seizure medications, it is likely that it will still take some time for both reactions to the absence of medicines to set in and his body to actually start to shut down.

The hospice spiritual care person was here this afternoon and gave me a Reiki treatment after the decision was made…that was helpful. I’m doing my best to stay calm and centered and know that all of your prayers are what is helping hugely.

Much love,

Susanne

The Time of Waiting – June 23, 2009

2009-06-23T06:54:00.000-07:00

Sunday was Father’s Day, and Craig was delighted to hear from all his children and his eldest niece. He felt a bit more energetic, sitting up on the side of the bed for two meals. The night then was difficult, with lots of congestion, coughing, and breathing difficulties. This meant little sleep for both of us. Yesterday he was very quiet, sleepy, and minimally responsive. We raised the steroid level yet again, hoping to keep ahead of the tumor growth and swelling.

Hospice and the oncologist evaluated his situation with us yesterday. The vital signs are still about the same, but his lungs are definitely in worse shape. We started a new drug last night to clear out some of the phlegm, so he slept better. Our friend Holly Timberlake also spent the night and took the lead caregiver role, so I slept upstairs in my bed with the door closed and got caught up on sleep a bit. Blessing!

We had study circle here yesterday evening, although Craig wasn’t up to having some of it in his room. The participants still visited him and perked up his spirits though. Our friend Nik also came in during the evening, so he, Holly, and I surrounded Craig’s bed with prayer and love.

I’ve thought a lot lately about the passage below written by Marjorie Morten about Bahíyyih Khánum (daughter of Bahá’u’lláh) and its applicability to and lessons for Craig and I at this time:

“The word mazlúm, which signifies acceptance without complaint, has come to be associated with her name. She was never known to complain or lament. It was not that she made the best of things, but that she found in everything, even in calamity itself, the germs of enduring wisdom. She did not resist the shocks and upheavals of life and she did not run counter to obstacles. She was never impatient. She was as incapable of impatience as she was of revolt. But this was not so much long sufferance as it was quiet awareness of the forces that operate in the hours of waiting and inactivity.

“Always she moved with the larger rhythm, the wider sweep, toward the ultimate goal. Surely, confidently, she followed the circle of her orbit round the Sun of her existence, in that complete acquiescence, that perfect accord, which underlies faith itself.

“So she was in life. And when she came to die her failing faculties threw into sharper and more intense relief the nature of her heart and spirit. It was as if she first let slip away the mechanical devices of the mind and the transient sense perceptions while holding fast to the end the essential elements of her being, unclouded by extremity of bodily weakness and pain. Still her smile spoke strength, serenity, tenderness and the love that is both recognition and bestowal.” (The Bahá’í World, 1932-1934, Page 181-185)

Love,

Susanne

Craig’s Physical World Narrows – June 20, 2009

2009-06-20T07:40:00.000-07:00

Craig has spent almost a week now exclusively in bed and in his room. Each day we have asked if he wants to get up, but we will now probably stop asking. His wheelchair is now folded up in a corner, and the parts of our home that were moved to accommodate it are moving gradually back into place. The TV is now outside his doorway so we can watch a movie with him in the bed. It’s a weird transition—not wanting to assume he’ll never get up again, and yet seeing that he just doesn’t have the energy to do so either. The nurse and I yesterday moved his bed so he has a better view out the window and all of us have better access to care for him from both sides of the bed (it was against the wall). I’m beginning to give the caregiver some days off, because there just is not enough to do.

Craig’s vital signs are constantly changing. Heart rate, blood pressure, and temperature are all ranging above and below normal daily. His lungs are more congested, so I’m doing breathing treatments more often and occasionally cough syrup when the coughing is making sleep impossible. He’s generally eating two small meals daily. It’s clear that Craig just wants to sleep and wander in spiritual space, so having physical interventions (bathing, breathing treatments, pills, etc. etc.) are a test. I often simply sit at his bedside and hold his hand…or simply let him sleep (and keep checking whether he’s breathing!).

Craig’s mother and sister drove over from Pennsylvania yesterday for a lovely visit. They had not been able to be here since Easter/late April, so it was good to see them. Betsy, Craig’s support group leader at The Gathering Place, also came for a visit with him yesterday. Music and Art therapies were both canceled this week, but he’s still open to them happening next week…we’ll see.

It’s becoming harder for me to leave Craig for any length of time. I’m wondering too much what is happening in my absence, and he seems to need me close by. I am still taking occasional breaks though – got to the grocery (he’s enjoying the cornmeal mush again), dentist (no cavities), and massage therapist (lovely) this week.

Love,

Susanne

Fever and Coughing – June 16, 2009

2009-06-16T14:43:00.000-07:00

The rest of the day yesterday was difficult in many ways. When the hospice nursing assistant and I tried to get Craig out of bed with the lift, he slid out onto the floor (gently). So, we needed the local helpful firemen again to get him into bed. He then chose to spend the remainder of the day in bed.

In the early evening, he began coughing, and breathing treatments, cough drops, Vicks Vaporub, etc. etc. didn’t stop it all night. Finally by the third breathing treatment around 5 a.m., the coughing stopped and we got some sleep. The hospice nurse came and checked him during the night and discovered that he is now running a fever. She ordered cough medicine for him in case we need it from now on, too.

Craig has run a fever all day, although Tylenol is keeping it down somewhat. He ate a piece of toast and some blackberries is all. While it’s possible he has an infection, it is more likely that the tumor is now affecting his ability to maintain a normal temperature. Bonnie Schaefer, a friend from my support group bought and brought me a new humidifier for Craig’s room, since that is helping his breathing. Our old one was way too loud! I caught a 2-hour nap in the afternoon while Craig slept. He has again spent the day in bed.

Our friend Bob Horn stopped by this afternoon and was able to get Craig to laugh a little with his stories. He asked Craig if he is “bored”, to which Craig quite clearly responded that he wasn’t. The spiritual part of this adventure is keeping him interested! John Cunningham is coming this evening along with the caregiver so I can go to my support group. Last week Craig got so sad about me leaving, that I thought having a friend here might help.

Hospice at this point is saying that Craig has fairly extensive healthy physical reserves, so it is taking time for his body to actually shut down. It will likely (not guaranteed!) be a gradual process. Craig and I together with the nurse decided to keep him on the higher dose of steroids, because the swelling in his head and neck is becoming more uncomfortable.

Love,

Susanne

Heavenly Stairs vs. Physical Ones! – June 15, 2009

2009-06-15T09:17:00.000-07:00

So, if you picture the stairs that we run up and down all the time, Craig would have easily made it to the top of the staircase sometime this weekend. This morning when I commented that the climbing seemed to be going very slowly, he agreed! So, the only conclusion I can reach is that the heavenly variety works a lot differently than the earthly kind! He says he is still being accompanied up the stairs by the same people though. The emotional push and pull for everyone of this process of preparing for him to die and then him continuing to live is exhausting.

He spent the weekend wandering between here and “there”. Friends flowed in and out visiting, saying prayers, and singing for him. He shed tears often in the process. He spent some time up in his wheelchair. Yesterday we sat on the back porch for an hour or so holding hands and listening to prayers set to music. I shed a few tears then as well.

I realized that I needed to have friends come almost more than Craig did. Sometimes the alone time is a blessing. However, sometimes it’s very hard to be here alone doing everything. It was good to have Holly here with me on Saturday evening/night/morning, and up with us during the night helping. I’m struggling a bit more with taking care of myself right now. Patterns of sleeping, eating, exercising, etc. are all more random. Usually I can get back to sleep after being up with Craig, but at times, it’s difficult once I’m wide awake.

Craig is now very shaky and losing his balance, even sitting on the edge of the bed. So he now requires support and assistance with virtually everything – eating, using the urinal, getting positioned in the bed. I gave the caregiver (and us) the weekend off, but he’ll be back today to help. There’s a pile of bedding to launder and dirty dishes to handle, so good to have help back.

One of the interesting challenges now is that in trying to reduce Craig’s head pressure discomfort from the growth of the tumor, we have increased the steroid levels. The side effects of this drug include increased appetite, thirst, and urination. So, at a time when all of these had begun to significantly decrease, they are back increasing again. This drug is not intended to extend Craig’s life, only increase his comfort, so we are questioning whether that is really true. We meet with our nurse later today and will discuss this together.

Love,

Susanne

Quick Update – June 13, 2009

2009-06-13T15:12:00.000-07:00

Craig is still physically with us and spent the afternoon out of bed. After I read him his email messages, many of which moved him to tears, he simply wanted to sit quietly in his wheelchair. At one point, he didn’t want me to touch him or move him and said he was “there”. He seems to be wandering between this world and the next one, zoning in and out and confirmed that he’s still walking up the stairs.

Our friend Nik joined us for a while so I could sleep (last night was a constant series of waking up to help him and finally a breathing treatment from hospice about 6 a.m.). When I got back up, I was able to help Craig express that he’d like Nik to sing to him, which he did, and prayed with him, too. So, peaceful time… Our friend Holly is coming in for the evening and to spend the night, so I’ll have company and help.

Susanne

Stairway to Heaven, June 12, 2009

2009-06-12T19:56:00.000-07:00

As Craig is spending more time in bed, he often sits on the edge of the bed with a wooden TV tray in front of him with his meal. Tonight I pulled in a chair and my own tray and we ate together – baked chicken, dressing, carrots, and potatoes. After dinner we drank tea and ate cookies and talked.

Talking these days is mostly Craig saying single words so I have some idea of what he is thinking about. Then I ask questions that he can answer with “yes” or “no” so I figure out what is on his mind. We got talking about the angels. He motioned with his hand that they were higher than him and on his left side. Pleasant is no longer with him (I asked if he had to go back to work, and Craig said “yes”!). His Dad, Kevin, Janet, Becky, Debbie, Pearl, and now Jet Andrews were there tonight.

I asked if he is seeing the angels in the daytime now or still only at night. He is seeing them at both times, but not all of the time. I asked if he sees them only in his bedroom (“no”) or if he now sees them elsewhere in the house and out in the driveway, where he likes to sit in the sun. He said “yes”. I asked if he had seen anyone famous like Christopher Columbus, and he said “no”. I asked if he had seen ‘Abdu’l-Bahá or his heroes Mulla Husayn or Quddus, and he said “Oh!” “No!” and looked very surprised. I commented that maybe that was why he hadn’t left yet, that he was waiting for them. He said “maybe”. The only people he has recognized with him are friends from the greater Cleveland area who have passed on and his father.

I curled up in the bed next to him for a while. At one point, I was laying watching him and he suddenly stared straight ahead and said “Oh! Stairs!” Through questioning I was able to determine that he was seeing a set of stairs floating in the air, that the angels were wanting him to climb the stairs, that the climbing once he began was “easy”, that he was not afraid, and that the arrival “plaza” that he painted in last Saturday’s painting was at the top of the stairs. He said a couple of times that “they are there in spirit”. I asked if they wanted him there in spirit, too. He responded “yes”. He then had a brief time of confusion where he didn’t understand quite where he was and what I was asking him related to the stairs. He said “this may be the last time I see you”. I asked if he wanted me to call and gather the few people he had said could be at his bedside while he was passing, but he didn’t want that. He just wanted quiet.

We played a lot of music all evening. During the time of the stairs, the song that was playing was a Bahá’í quotation, “O MAN OF TWO VISIONS! Close one eye and open the other. Close one to the world and all that is therein, and open the other to the hallowed beauty of the Beloved. (Bahá’u’lláh, The Persian Hidden Words, #12) Amazing!

There is a prayer Craig has been asking for since Saturday, but we have been totally unable to figure out which one he wants. We decided tonight that the angels could probably help him find it, and he smiled in relief and said “yes”.

We did our normal bedtime routine of changing his clothes and getting him in bed. I now have to use the lift to place him in the bed high enough so that his lungs don’t fill with phlegm. We lay together and listed the “roses” of the day. I cleaned up the kitchen from dinner and then went back in to sing the Healing Prayer with him, which I’d forgotten to do. I said a second prayer as well and kissed him goodnight.

It will be a late night – Medical Services is delivering breathing treatment equipment and medicine to him around midnight in case we need it. The sublime and the practical together...

Love,

Susanne

Music, Paintings, and Poetry, June 11, 2009

2009-06-11T19:30:00.000-07:00

Much to Craig’s delight, he now has his guitar back that he loaned a friend. It has been his faithful companion since at least college days. The music therapist filled him with joy when she played “his” songs on it for him this week. www.claricomm.com/CraigGuitar.jpg

We’ve been talking about our current hospice painting and poetry but haven’t really shared it, so I’m doing this posting to attempt to do a little of that. On June 6th, Craig painted an abstract depiction of his journey toward the next world. www.claricomm.com/LivingUp.jpg In response to questions from his daughter Michelle and I, Craig shared these words about it:

Living Up

Narrowing passageway

I’m going along it

Traveling on a river

There’s a plaza, an arrival place, a compass [far right of painting]

Traveling here, arriving there

People with me throughout history

Very nice at end, less people

More help at beginning, less at end

I’m in the middle, I want to be at the end

There are things to walk over first [orange lines]

- Craig Farnsworth, June 6, 2009

Today in art therapy, he painted in his art journal a painting he entitled “Soul Completion”. www.claricomm.com/SoulCompletion.jpg The circle represents Craig, and inside are the angels and Craig together, singing, praying, and communing. Today for the first time Craig did his painting in bed instead of up at the table. www.claricomm.com/ArtinBed.jpg

On June 5, I painted “Intimately Touching The Dying Process” www.claricomm.com/IntimateDying.jpg. I then shared these words:

(Context: If it’s so hard, why aren’t you putting Craig in a nursing home?)

So when I began today, I used the flesh tone for the gift of touch,

and then drew with the fingers of touch

In the center part of the gift of having Craig here with me at this time

Is that we can hold hands

I can lay with him,

Put my ear on his chest and hear his heart beat.

And I’m intimately touching his most basic physical needs

As well as his need for emotional and spiritual touch.

We’ve been intimately touching on the gift of our marriage

And I’m intimately involved in helping him speak

And companioning him as he struggles with living and dying

It feels like a privilege at this time to

Help him with his journey

And to powerfully choose with him

How to beautifully die.

- Susanne Alexander, June 5, 2009

This evening we watched a movie that we both enjoyed, and then we listened to Bahá’í prayers set to music for about an hour. Last night was difficult as Craig’s lungs filled up with phlegm and it was a struggle to get him positioned in the bed for greater comfort. It was scary listening to him have difficulty breathing. I didn’t call hospice fast enough for help with him…I’m still learning about doing that! I’m hoping he won’t be coughing as much tonight and we both sleep better.

Love,

Susanne

The Race and Physical Shifts, June 10, 2009

2009-06-10T19:32:00.000-07:00

On Sunday (June 7), Craig requested that his daughter Michelle and I represent him on the Craig and Stephanie team for the annual Race for the Place fundraiser for The Gathering Place (our cancer support center). Our friend Stephanie died of pancreatic cancer about 18 months ago. We had about 28 on the team and raised about $1200. It was a bit sad doing it without Craig, that’s for sure, but good to do it nevertheless.

Here are the photos: www.claricomm.com/RaceforthePlace2009.pdf

Our uneventful period ended over the last couple of days, as Craig and I are dealing with things coming out of both ends of his body again. Thankfully, the hospice nursing assistants and our caregiver helped with the cleanup process!

Kim Klein, the hospice nurse, and I assessed Craig today. We have been lowering the steroid level for the last 10 days. However, it’s clear that brain swelling is now uncomfortable for him. He is experiencing pressure around his forehead and temples. There’s also swelling in front of his ears and at the base of the neck. So, the dosage will now ramp back up somewhat.

There continues to be some lung congestion and capacity reduction as well, but he is still sleeping well and the coughing is not generally keeping either of us awake. He’s still sleeping a lot and eating only small amounts, but still recognizing visitors and clearly understanding most of what is said to him.

Love,

Susanne

The Sacredness of Accompanying Craig – June 6, 2009

2009-06-07T19:19:00.000-07:00

Each day brings new opportunities for attuning to what Craig is feeling and trying to communicate. He is grieving leaving this world. In particular, this week he has been sad about the relative shortness of our marriage (almost 10 years). And at the same time, he’s sad that the dying process is taking so long!

I reminded Craig yesterday and today about our Bahá’í wedding vow, “We will all, verily, abide by the Will of God.” In fact, we sang it together today (as we did at our wedding) so I would be clear that he heard it. I have asked him to “go with the flow” and not try to agitate for or force his ending here to go at any other pace but what God wills.

My Dad sent me an email this week that included the phrase “in intimate touch with the dying process”. That became the subject of my artwork yesterday with the hospice art therapist. I feel so privileged to be accompanying Craig in this process. The love in his room is palpable. Craig’s artwork yesterday was all about locks and keys. We think he’s searching for a way to unlock the door to the Kingdom of Heaven.

Today Craig has been accompanied by his daughter Michelle, who just arrived for the weekend. For the first time in their lives, they painted together this afternoon. Of Craig’s two paintings, one he described as including many angels gathered together singing. The other was of traveling from a wide place through a narrowing passageway and out to an open “plaza” at the other end. He said he was in the middle, but wants to be at the end.

We got an email yesterday from our dear friend Holly. She said, “every breath is an opportunity for awareness of breathing in the Holy...” So we breathe in and out each day and experience the sacred. She stopped by this evening and brought us dinner, so we breathed together!

The hospice nurse yesterday said Craig has lost more lung capacity since Wednesday, but his heart rate was back to normal. The steroid levels continue to drop. All else seems stable at the moment.

Love,

Susanne

Craig’s Body is Slowing Down – June 3, 2009

2009-06-03T15:06:00.000-07:00

This week Craig is spending a lot more time in bed. He’s still getting up for brief periods, but he’s lower in energy. He goes in and out of sleep, and I and various visitors wander in and out. Sometimes I play music. His appetite and body functions are slowing down. He has decided that it’s time to lower the steroids he was taking, so we are gradually ramping them down each day. However, he will likely stay on a maintenance dose to help prevent seizures. He can only communicate in a limited way, but he is still understanding what is said to him.

The angels (many of whom he recognizes) are singing to him some nights, and he’s very happy to hear them. As with most things in Craig’s lifetime, he is struggling with the patience to wait for God’s time to catch up with his! But, we know it will soon.

I’m now sleeping on a fold-out couch in the family room, which is close by his bedroom in case he needs me during the night. I went to the support group by myself last night – very sad to do. His group members and mine both missed him very much.

Our friend Holly Timberlake has created a podcast for Craig to help him with the process of being born into the next world. If you wish to listen to it, the link on her website is http://www.todaystapping.com/craigs-birthing-meditation/. (Free Real Player or Quick Time software seem to be best for playing it)

The hospice nurse just left. For the first time, there is beginning to be some diminished capacity/air flow in Craig’s lungs and some increase in his heart rate. They will monitor him closely over the next few days.

Love,

Susanne

Staying at Home – June 1, 2009

2009-06-02T07:51:00.000-07:00

After the last postings, when it was clear that this part of our journey is physically difficult, especially on me, a few people asked why we didn’t go ahead and move Craig to a nursing home. Let me try to address that.

We consider and experience our home as sacred space. It is full of spiritual vibrations, prayer, and love. The view out the back windows is of a ravine full of trees. We can see the sunset down through the trees and catch glimpses of its reflection on Lake Erie in the distance. It’s very quiet, especially in the evening and at night. We can sit and pray together over a cup of tea. I can crawl into his bed with him for snuggling at bedtime. If he’s hungry for ice cream, his favorite flavors are in the freezer nearby. Friends and family can easily stop in or call. Craig’s painting supplies are easily accessible, and the CD player is handy for favorite music. I know when he needs to sing the short healing prayer. If I need to work or rest, my office is upstairs and the bed close by. I just needed some daily help, and I have that now.

The staff at the nursing home seemed caring and helpful. But, overall, I just couldn’t see it working for Craig. The nursing home reeked of urine. The residents and staff make the place full of activity and noise. Craig is losing enough mental abilities, that the new place would be confusing, and it would be difficult for him to rest or figure out new routines and even how to work the bed controls. We think that this time of challenges is actually very short. We are confident we can cope for a limited amount of time. Then I plan to sleep for a couple of weeks!

And…life has unexpected curves, so we’ll continually re-evaluate as needed!

Love,

Susanne

Is There Any Way to Do This Well? May 29, 2009

2009-05-30T12:20:00.000-07:00

Our hospice art therapist gave us a timely reminder today that what we have been going through these last weeks is very much like the birth canal transition for babies. It’s often messy and full of pain, but the outcome is generally a happy one! Craig just wants calm, quiet space to wind down his life. But dealing with his physical needs just seems to keep requiring more people and more fuss. Wednesday night was a brief trip into hell. At the end of the evening, I wrote this to the hospice nurse:

“Okay, I give up. I can’t do any transfer any more. My neck’s out. My back’s out. And the Hoyer lift and I are having swearing pitched battles with one another. I tried tonight to get him from the bed to the bathroom…in a hurry because he thought he had to have a BM and didn’t want to have it in the bed. I had trouble getting him straight in the sling. I’m having trouble all the time pushing him in the lift, getting the legs of the lift to stay apart (they keep moving back together) and then getting him far enough into/straight into the chair when I’m doing it by myself. I’m not strong enough to lift him back into the chair. He had no strength in his legs and couldn’t help. I finally dropped him in as best as I could into the seat of the chair, but we were both so stressed that he had a mini-seizure. Then I got him to the toilet because he still had to go and we weren’t fast enough so he peed all over himself, his clothes, the floor, and me. And no BM. I had to keep holding the commode chair steady, because he’s so heavy and off center, that every time he moved, he almost tipped over. And then we held each other and cried. But then I couldn’t get him off the toilet, so the firemen had to come help get him off the toilet and back into bed [six of them in our little bathroom when we only needed two!].”

We then sat and listened to a spiritual music CD and ate pizza and waited for the on-call nurse. So, we calmed down and re-centered a bit. Someone came yesterday and did some re-training with me on the lift, so I actually did use it successfully at bedtime last night and tonight.

Yesterday was calmer (thank you God!). The hospice nursing assistant got Craig washed at 9 a.m. and he went back to sleep and got up about 1:15 p.m. We spent the afternoon and early evening with me reading our new “Empowered Healing” book to him all the way through and making edits. Then he was ready for bed around 9 p.m. Today we started another new routine. Craig sleeps in until a hospice nursing assistant comes at 11 to shave, bathe, and dress him. They then get him up for breakfast/lunch. We now have a new daily caregiving service, and they’ve sent us a very strong man who puts his arms all around Craig and lifts him from one place to another! So, that helped today. I got to the chiropractor and massage therapist and got the kinks out of my own body while they did that. And I got to miss the enema party with the hospice nurse at the same time! Yay! [Note: We evaluated whether to send Craig to a nursing home and decided to try the daily caregiver instead.]

I’ve been so accustomed to doing excellent caregiving for Craig that I’m frustrated at not being able to handle this period anywhere near as well as I would like to be. But, the team is rallying, and I’m trying my best, and we are muddling (“laboring”?!) through it all!

Love,

Susanne

Craig’s Paintings, Songs, and Poems – May 27, 2009

2009-05-30T10:43:00.001-07:00

Over our fireplace mantle are now two framed displays, both including Craig’s paintings and poems from 1998. See photo, www.claricomm.com/CraigPaintingsPoems.jpg.

We previously shared the one poem that Ginny Kalley, our music therapist composed original music for. She has now completed the second one, “The Wind” (the painting on the right side; Here Comes the Sun is on the left). Here are the words:

The Wind

The wind is clear

The wind is clean

The wind is blowing, clearing the cobwebs.

The moon is bright

The moon is light

The moon is shining like as a beacon.

The stars are glistening

The stars are listening

The stars are leading the man to open.

Running, running, running

Singing, singing, singing

The wind, the moon, the stars.

The path has a freshness.

The dust has been removed.

The way has become clearer.

The wind is carrying a song

The moon is lighting the way

The stars are piercing the sky.

~ Craig A. Farnsworth, November 11, 1998

In the center of the photo is a mandala drawing done by Ernie Horvath of our cancer Spirituality Group. It depicts the Sunrise and Sunset of Craig’s life.

Love,

Susanne

Craig Learns to Fly, May 25, 2009

2009-05-26T10:23:00.001-07:00

Okay, I’m starting to recover from caregiver meltdown last week. Our hospice nurse, Craig, and I have been in brainstorming mode trying to figure out how to not burn me out and wreck my body. And how to keep Craig home instead of down the road in a nursing home. As Craig is becoming harder and harder to transfer (As testimony, there’s an array of bruises on his posterior from landing on the arm of the wheelchair), we explored whether to confine him to bed. The decision was “not yet” – and we got him his own personal flying device – a Hoyer lift. See photos:

www.claricomm.com/CraigFlying.jpg

www.claricomm.com/Craig-Annie-and-Hoyer-Lift.jpg

Craig’s initial response the night the lift device showed up was complete resistance. I got very frank about an “attitude adjustment” – it was let the lift stay or he could consider either being bedridden or moving to a nursing home! Now he’s decided it’s fun…in spite of my challenges driving the thing and operating three separate controls on it! He also agreed to an increase in the steroid dose, which is helping him talk better and making bathroom transfers easier and safer.

Over the last few days, it became clear that I could no longer safely transfer Craig in and out of the shower either. Hospice is now providing a daily nursing assistant to bathe him in bed and get him dressed and up in the morning. That’s very helpful.

I was able to get to a massage therapist and chiropractor on Friday and then had a respite day on Saturday. Unfortunately, friend Nik Tressler then got stuck with our ongoing saga of Craig’s digestive system. He took Craig out for a nice breakfast. On their return home, diarrhea and vomiting both hit simultaneously – thankfully in the bathroom. They blessedly cleaned it up and didn’t call me, so I continued on with resting and relaxing and dealt with it from 4:30 to midnight instead. We are trying to determine whether one of the medicines is causing this…that’s our best guess at the moment. Craig’s getting very tired of rice, even though I’m varying his diet with rice cakes, cooked rice, baby rice cereal, rice milk, Rice Krispies, Rice Chex… It’s getting broken up with bananas and applesauce, too! So, we hope to resolve this very soon…

Craig is talking about it being “disorienting” that he is wandering between this world and the next one. He says it’s “weird” and it’s “easy to go, hard to stay.” We talked about the possible wisdom of this transition taking time, being gradual, and at times being difficult. He painted three pictures this afternoon about wanting to be with the angels and about the angels “singing beautiful, clean, and clear.” It was the first I knew that he had heard the angels sing.

We hosted our weekly study circle tonight and began it with a brief memorial service for relatives of the group who had passed away. Craig shared about two of his “angel guides”. We used a beautiful CD of music called “Fire and Gold” by Elika Mahony (www.elikamahony.com) – heavenly. We then began studying the section in our book about “Life and Death”, so Craig’s experiences kept coming up all evening.

Every day now is different. Routines are virtually non-existent. Two days lately, our morning couple prayers happened at 9 or 10 at night. I’m getting better at eating while Craig is sleeping and not waiting for him to wake up. I have to be vigilant to not miss doses of pills – both his and mine. There is a stream of people in and out of the house at a time when Craig just wants peace and quiet…but unfortunately, that would mean me doing everything, and that’s not possible. So, we cope one day at a time doing the best we can.

Love,

Susanne

Tough Day, May 20, 2009

2009-05-20T19:52:00.000-07:00

Craig and I have agreed that I won’t get too graphic on the blog. Some days that’s a tough agreement to keep!

The diarrhea from 10 days ago turned into constipation and the treatments for that turned back into diarrhea in bed about 4:30 this morning. While trying to get up, Craig ended up on the floor, and we needed the firemen to help get him up and help me with him. Then the cleanup. Then the hospice nurse. Then more cleanup. Done about 9 a.m. Tried to sleep, but the neighbor needed to edge his lawn for an hour, so a nap later worked instead. Upon Craig waking up, we discovered that adult diapers are more made for old women with small bladders, not Craig. So, the bed got changed twice today.

It’s times like these that it’s harder to take my own advice and say “O God!” instead of “O s—t!”! We got through it all with perseverance, tears, prayer, and gratitude. I said to Craig at one point that at least it wasn’t as bad as the prison in Akka! Baha’u’llah, His family, and many early Baha’is in the 1870’s (I’m bad at history, so the date’s approximate…) were banished to there in northern Palestine(now Israel) for being too spiritually popular in Iran, Iraq, and Turkey. There was no water to drink or wash in, no food, high heat, foul air, cramped in small rooms, illness, and more. At least we have hot, running water, supplies from hospice, firemen and nurses to call for help, rubber gloves, diapers, and washing machines!

The rest of the last few days have been fairly quiet. A highlight was Thursday night’s cancer-spirituality group where we talked about labyrinths, a meditation/prayer tool that helps people center themselves with God. On Sunday, we went to one at Ursuline College, about 20 minutes from our home. I pushed Craig in his wheelchair around the path, and we made it to the center for some prayer. Here is a link to a photo so you can better see what I’m talking about.

The angels have been back visiting Craig a couple of nights in this past week. Mostly the same people, but Bill Fountaine was new. It’s amazing how many people we know who have passed on to the next world! Quite a crowd to greet Craig!

Craig is sleeping more these days. He’s had a couple of days where he has slept until after noon. I get lots of writing done, but it’s strange to keep adjusting to when to do meals and other activities. His legs are getting weaker – I’m often now pushing his wheelchair around the house instead of him using his legs to get around. And he has an infected spot on his “good” leg that we are treating. But, we are still successfully transferring him from here to there…most of the time!

So, we keep going…one day at a time.

Love,

Susanne (and Craig)

Numbness is Spreading, Books are Growing, May 13, 2009

2009-05-13T18:43:00.000-07:00

Much to our amazement, it’s now been three months since treatment stopped. The original forecast was that Craig living more than two months would be amazing. So, he continues to astound.

Craig calmed down somewhat today, and that actually seemed to help him communicate better. He was also able to sing more words, which apparently comes from a different part of the brain, so some phrases came through more clearly. I was able to read to Craig new parts of “The Journey” book about his life and some from the latest one on the Fact-Based, Spirit-Guided Path, and he was able to indicate his approval and some input.

Kim Klein, our hospice nurse, checked Craig out today. She is trying to get a speech therapist out to help us with some communication techniques. Craig’s blood pressure, which was fairly high for him on the weekend, was back to normal. However, we discovered during the exam that numbness is now spreading down from the right side of Craig’s face, where it has existed for months, into his right shoulder and down his torso, front and back. We assume that this is linked to spreading of the tumor through the left parietal brain lobe.

Tonight we watched the movie “Guess Who’s Coming to Dinner”, about an interracial couple in 1967 wanting to marry. It was a movie we had both seen before, but we enjoyed seeing it again and being amazed that in our lifetimes, such a marriage went from being illegal in many states to now when someone who could be their child is President.

Susanne

Crying Myself to Sleep, May 12, 2009

2009-05-12T09:09:00.000-07:00

I cried myself to sleep last night. Grieving losses…feeling some lower moments…

We realized yesterday that the cane had become a superfluous item that we just kept moving out of the way. Craig’s not walking anymore. We can still transfer him between bed-wheelchair-commode-car by grabbing the safety (gait) belt around his waist – although even that is getting more difficult as his legs weaken.

Craig’s frustration level yesterday was very, very high (he was literally tearing his hair out!). He is thinking better than he can talk, and trying to make himself understood is getting more difficult by the day. Visitors often don’t realize just how limited his ability is because he has always been a good listener and they fill up the space with their words. Even my ability to interpret on his behalf is struggling.

We attended a visitation yesterday for John Schaefer, a member of Craig’s support group with prostate/bone cancer who died on Saturday. His wife Bonnie is in my support group. I’m glad we went…and it’s hard when I look through the eyes of wondering about Craig’s service.

I’m back in the middle of dealing with an ongoing legal issue with my business. It’s so hard to think strategically through challenges right now…I’m glad I have good help. But it’s a hassle I just wish wasn’t there!

“We carry around in our heads these pictures of what our lives are supposed to look like, painted by the brush of our intentions. It’s the great, deep secret of humanity that in the end none of our lives look the way we thought they would. As much as we wish to believe otherwise, most of life is a reaction to circumstances.” Paul Richard Evans, “The Sunflower”, p. 355

But, today is another day. The sun is shining. Craig is painting out his frustrations. And, we go on…

Love,

Susanne

Difficult Weekend, May 11, 2009

2009-05-11T09:48:00.000-07:00

As we’ve mentioned, at the end of each day, we note the “roses” and “thorns” of the day…and there are always more roses than thorns. This weekend tested that scenario a bit, as either medication doses, tumor changes, or a virus hit Craig’s intestinal system. Managing Craig physically is challenging most days, but diarrhea added a new level of complexity and exhaustion (I got better at it by the end of the weekend, however!!). So, the hospice nurse was in twice for visits and adjustments. Today he seems to be mostly back to “normal” – Yay!

On the roses side, Craig’s daughter Michelle and granddaughter Karida were in for the weekend. They helped me make a giant pot of applesauce for Craig, which he loved. Being on a rice, bananas, and applesauce diet was not thrilling for him, but he was relatively compliant! Four-year old Karida (5 in June) drew us some great pictures, too. It was a challenge trying to minimize her awareness of Grampa’s difficulties. On the other hand due to her mother’s excellent preparation with her, she was also able to briefly talk to Grampa about passing away soon.

I ran across a quotation recently that seems like it fits what I’m feeling and facing:

“There are times, it seems, that God throws a cosmic switch that moves the tracks beneath us, hurling our lives headlong in a new and uncertain direction. Of these times just two things are certain: It’s best we don’t know what’s ahead. We can never go back.” Richard Paul Evans, “The Sunflower”

Here are the last of the current batch of photo montages—I’m finally caught up! These ones are of Craig with friends:

www.claricomm.com/Friends_Mar-Apr_2009.pdf

www.claricomm.com/Friends_Apr-May_2009.pdf

Love,

Susanne

In the Peaceful and Creative Zone, May 7, 2009

2009-05-08T17:13:00.000-07:00

I’ve been so busy writing other things, that I forgot about writing for the blog! My apologies…

We’ve been in a peaceful and creative zone over this last week. On May 2, we attended an all-day symposium on brain cancer at The Gathering Place. Our social worker at the Ireland Cancer Center, Jaime Hein Foyle, coordinated the event. Dr. Nock, our oncologist and Dr. Einstein, our radiation-oncologist, were both presenters, and we knew many others there as well. Craig made it through the day with only two short rests/naps, so we were quite amazed!

That evening, a new book was born as we talked about the day. For quite awhile we have talked casually about taking what we’ve learned and done over this 2-year cancer journey and write a book. Honestly, we figured I’d write it after Craig passed! But, here we are doing it, and I’m glad to have Craig’s input. The focus will be on sharing the tools of the “fact-based, spirit-guided” approach to cancer. It feels great to be book-creating!

On May 4th, Arlene Nedd Green came to visit. She, along with Pleasant Montgomery, visited Craig’s Sunday School class at the Federated Church in Chagrin Falls when he was a teenager and shared about the Baha’i Faith. This was Craig’s first introduction to the religion (he later became a Baha’i at Hiram College). Arlene now lives out of state, so this was the first time they had seen one another in about 20 years.

Craig’s legs are becoming increasingly weaker with some bouts of pain in them. We are managing it with increased steroids, ointments, and Ibuprophen. I couldn’t get him out of bed one day for a few hours until a caregiver could come to help. We were scared that the time of being bedridden had arrived, so we both felt relief when the steroids worked and he could get up. The steroids are helping him communicate somewhat as well, but we are doing more and more hand motions and guesswork. We got out this week to our support groups and today for haircuts, so we are doing our best to live as well as we can.

Craig’s still painting and giving me input on the two books underway when I read the content to him. The music therapist got him singing and drumming today, too. We have watched two movies and recordings of a variety show we both performed in years ago.

Craig sleeps until he wakes up or is ready to get up and shower, so our schedule these days is very fluid and constantly changing. I work and snack until he’s up and then fix breakfast for us both. Often it is so late in the morning that we only get in two meals and a snack during the day.

Here are links to a couple of photo montages (I’m catching up!):

www.claricomm.com/Craig_and_Family_Mar-Apr2009.pdf

www.claricomm.com/Craig_Living_Fully_AprMay2009.pdf

Love,

Susanne

More Angels Gather – April 30, 2009

2009-04-30T15:21:00.000-07:00

Craig has woken up so happy these last couple of days and full of a wonderful energy. I ask him each morning how his night was and what happened. Last night he said Kevin and Pleasant visited, but also “the girls” showed up, too. There were more people than he could name or that I could identify with questions. Baha’i friends from our area (the girls) who have passed were there: Janet Weaver, Deb Cunningham, Becky Huff, and Pearl McGill.

For the first time, Craig also saw his Dad. And lots of light.

I was teasing about him “partying” with the angels, but that didn’t seem to be the right word. He thought “communing” was more the nature of the experience.

On the one hand, all of this is good news. I’m glad there are people waiting to greet Craig with love, and that he’s headed for a positive place. On the other, it’s a little bittersweet…these are signs of him moving on.

The hospice nurse today said that Craig’s vital signs are still excellent, and there are no indications that his body is shutting down. Seeing the angels is not on a linear timeline…there is still no way of knowing how long Craig will stay here.

Love,

Susanne (and Craig)

The Angels Are Back Visiting – April 28, 2009

2009-04-29T11:07:00.000-07:00

A few days ago, Craig invited the angels to come back again (they last visited March 30), and they have visited on some nights. He tells me that this time they are in color. Which then told me that last time they were in black and white–not a question I thought to ask! He still did not recognize anyone. Last night, however, his friends who have already passed on, Kevin Clavin and Pleasant Montgomery, visited him throughout the night. He seemed to think they were in regular clothes when I asked, but it was clear Craig thought this was a very mundane question about something so momentous and significant!

Here is a link to photos of these two friends with Craig. Kevin was a Baha'i and a coworker. Pleasant was the first person to tell Craig about the Baha'i Faith when he was a teenager, and he became a life-long friend.

www.claricomm.com/Accompanying_Angels.pdf

Craig said he came close to passing over and joining them, but there was still something stopping him. He felt that part of it was expecting an important visit today from his son David. They read through some of Craig’s journal entries about Dave over the years (I compiled them while working on Craig’s book), and they laughed, cried, and shared. So, very important time together (I stayed out of the way and worked upstairs).

Craig is sleeping much more and having moments of mental confusion. He struggles to remember how to paint and which silverware to use. He is mixing up names for me, his mother, his sister Nancy, and his eldest daughter Michelle. He greeted me recently with, “Good Morning, Mom!” Our communications are in shorthand, questions that take yes/no answers, and lots of guesswork. But, we are making it work as best as we can.

This afternoon was an emotional time again as our music therapist Ginny Kallay came to visit and played the song she composed to one of Craig’s poems, “Here Comes the Sun”. The words are below:

Here Comes the Sun

Coming full circle

Is a way to begin.

With the journey now started

The path is now cleared.

I can feel in my heart

A sense of new power.

Reclaiming myself

Moving on from the past.

I must now be patient

For the process to complete.

The newness and freshness

Takes time in the birthing.

~ Craig A. Farnsworth, April 24, 1998

How blessed we are by such talented people accompanying us!

Love,

Susanne (and Craig)

Photo Catchup Mid-March - April 2009

2009-04-24T09:09:00.000-07:00

Believe it or not, this isn't all of the montages left to put together, but I'm pausing to post what I've done so far! A very full period of time...

Craig's Appreciation Party, March 8, 2009

www.claricomm.com/Appreciation_Party-1.pdf

www.claricomm.com/Appreciation_Party-2.pdf

www.claricomm.com/Appreciation_Party-3.pdf

www.claricomm.com/Appreciation_Party-4.pdf

www.claricomm.com/Appreciation_Party-5.pdf

Dave and Christina Farnsworth Wedding, March 29, 2009

www.claricomm.com/Dave_and_Christina_Wedding1.pdf

www.claricomm.com/Dave_and_Christina_Wedding2.pdf

www.claricomm.com/Karida_Wedding.pdf

Grandchildren

www.claricomm.com/Grandchildren_Mar_2009.pdf

Craig's Niece Holly

www.claricomm.com/Craig_and_Holly_Tolles.pdf

Caregivers Interacting with Craig

Faithful Companions

www.claricomm.com/Faithful_Companions_2008-2009.pdf

Hospice - Nurse

www.claricomm.com/Craig_and_Hospice_Nurse.pdf

Hospice - Music Therapy

www.claricomm.com/Craig_and_Music_Therapy.pdf

Hospice - Art Therapy

www.claricomm.com/Craig_and_Art_Therapy.pdf

Love,

Susanne

Dying with Your Eyes Wide Open – April 22, 2009

2009-04-22T08:50:00.000-07:00

Craig’s physical condition went through changes over the last few days. He is experiencing difficulty with matching words with what is happening, so what comes out of his mouth often makes no sense and is quite different from what he is intending to say. He says he has some difficulty now in comprehending what is said as well, although that is less obvious to me. He is also now often forgetting names of those he knows well or giving people new names. I’m still waiting to see what he comes up with for me! Additionally, there is some decrease in his mobility.

On the soul side, we have finished the first draft of a book that contains Craig’s artwork and poetry from 1985 to 2000. We are still developing it, and plan to later add the artwork he is doing with Barbara, our hospice art therapist, but we are already very excited about its potential.

Recently Barbara mentioned that Craig was choosing to die with his “eyes wide open”. She cited the source of this phrase as Clarissa Pinkola Estés, Ph.D., in The Radiant Coat, Myths and Stories about the Crossing Between Life & Death. So, we ordered this book on CD and listened to it—fascinating material. I took a few scribbled notes of her insightful comments that occurred between the stories. I’m noting below some points that were most interesting and helpful for us:

- Death is our great companion and best friend who throughout our life nurtures, guides, doctors, and heals us, and at the end midwifes and transports us and is our accompanying guide to the next world, the next life

- We ally with Death when we enter it with our eyes wide open; Death meets us rather than reaches out to grab for us

- “Conscious Death”, the conscious crossing to the next world, requires these:

1. Clear Memory of where we are coming from, what we really are, and what the soul tasks are for us to do;

2. Clear Power to die in our own way and choose the quality of our mundane life and soul life in the process; refuse to allow others to interfere in our soul’s desire for restoration and healing

3. Clear Seeing about worldly attachments and illusions so it’s possible to let go of them; includes the gift of far seeing into the next world

4. Clear Knowing that helps with developing the intuition about the rightness of the process and time of leaving; a time of infinite joy when you see both this world and the next; it includes an increasing sense of inner and outer harmony

- Loving meditation and prayer helps us discover when Fate is ready to move us; we are chosen, we do not choose

- When the ego cries and grieves its perceived end, the result is emotions such as anger or denial, because the ego cannot go along for the journey

- Patience on this journey is required, as often the spirit is ready before the body is done

- Breathe forward to the next world, row to the next world, dance the next steps to being there, with eyes wide open have a clear birth and fly on

We have spent a couple of days thinking about these perspectives and discussing how they fit with our journey. I posed these questions to Craig, and to me as well (our responses are in the parentheses):

- Is he is in the mindset of trying to seek physical healing? (No, not anymore.)

- Are we using words these days that deny the possibility/probability of his passing? (Yes, at times.)

- Does he want to be in “Conscious Death” mode? (see below)

- Are we/he so attached to the creative process underway (music, painting, poetry) that this activity seems like a reason to stay here? (Maybe a little, but not really…it’s more like these are legacy projects)

Craig’s conclusion is that he wants to be in “Conscious Death” mode—Clear Memory, Clear Power, Clear Seeing, and Clear Knowing. I will shift, in response, the words that I’m using with him accordingly. Such an interesting adventure this all is…

Love,

Susanne (and Craig)

Physical Energy Dips; Spiritual Energy Soars – 4-15-09

2009-04-16T09:17:00.000-07:00

For two weeks, Craig has been riding on a wave of energy and filled with creativity. We have matched up his collection of about 20 paintings from 1998-2000 with his poetry and have some kind of book creation underway with it (with the help of our art therapist from hospice). He’s newly created about 25 additional abstract drawings and paintings, many of them with small inserted eyes and smiles. He describes them as “fun” and “happy”. Our home is filled with music. We’ve given away about 60 of the CD’s we made for Craig’s honoring/funeral service, simply asking people to ignore the statement on the back about the CD being in honor of his passing and for them to enjoy the music!

Our home feels pulsing with love. Oh, there are moments…when the phone rings one too many times (no don’t use this comment as a reason to not call!), or my rest time is filled with difficult discussions with friends, or I start crying at a sentimental love song the music therapist sings, or there is some unexpected hassle to deal with. But then, tonight we watched the DVD movie “August Rush” about love and music, and Nik stopped serendipitously with daffodils and hugs, and life balances out. We were also blessed this past weekend with Craig’s family driving in from Pennsylvania with Easter dinner.

The last couple of days, Craig’s physical energy began to dip. He’s sleeping more and having a bit more difficulty walking. His speech has become harder to understand, much to his frustration. Sometimes I just cannot figure out what he is trying to say. For the first time, he is beginning to lose the names of those close to him. Today he asked me to read him the eulogy he wrote for friend Kevin Clavin, who died in 1994. Craig is confident Kevin will be one of his “spirit guides” on into the next world. Someone to show him where the bathroom and gas station are! One of his paintings today began to depict the re-opening of the next world to him. (But we have clear instructions from Craig that there is to be no “fussing” happening around him about the possibility of dying!)

I often wake in the middle of the night and tiptoe downstairs. I stand in Craig’s doorway and listen to him breathe. There’s such comfort in hearing that sound. I say a prayer for him, and then I tiptoe back to my own bed. And try to resume sleeping. I’m so very tired. But happy too. I said at support group last night that much to my surprise, the last four months of “funeral planning” have been among the best times in our marriage. Spending more time with family and friends, connecting with long-lost friends, reading love letters and journal entries, reflecting on the course of our relationship, gathering and playing Craig’s music, singing, enjoying photographs, creating art…so many gifts enjoyed together.

We are remembering that we recently passed the one-year anniversary of our attending a weekend for Exceptional Cancer Patients (ECAP) and family in Meadville, Pennsylvania (www.ecap-online.org). Craig clearly links the quality of his cancer journey to Bernie Siegel’s ECAP philosophy as outlined in Love, Medicine, and Miracles. Craig is clearly an Exceptional Man, too!

Love,

Susanne (and Craig)

Live or Die? April 9, 2009

2009-04-09T08:46:00.000-07:00

Craig did not die in late March as he thought he would. On March 31, when he was fed up with everyone “fussing” about his potential passing, he declared he wasn’t going to die that week after all. The angels that had begun visiting him in his bedroom at night disappeared and haven’t returned since that day. He’s feeling better now that the steroid level is back up, so he looks good, has good appetite and energy levels, and is back walking some. However, he has been in an intense, frustrated, baffled struggle trying to figure out whether he is supposed to live or die. And if he is continuing to live, what does that look like and what is he supposed to be doing, anyway!

Over the weekend, the Reiki practitioners had him back thinking about living, and he began talking about the possibility of having a “spontaneous remission” (although he has a very difficult time remembering and saying the words!) On Monday, in response to his frustration, I asked Craig if it would be helpful to do a pro/con list for living and a second one for dying, which we did! His conclusion was that either choice would be potentially good… But, it did seem to free him up from the confusion in his head about it all. We maintain a calendar on a marker board in our living room. Every Monday is “SC” for study circle. Every Tuesday is “SG” for support group. Now, Craig has designated Wednesdays as “SR”—spontaneous remission focus days. A visitor then said Thursdays should be “SJ” – days for spontaneous joy!

Over the weekend, Craig had seemingly lost the ability to sing the short Baha’i healing prayer that he has sung regularly for 15 years. I didn’t realize how painful this was for Craig though until Ginny, the music therapist from hospice, joined us on Monday and he broke down crying in telling her about the inability to sing. She was able to cause a breakthrough and get him back able to remember the tune. He has been able since then to still sing it, sometimes with me singing along with him. So, he’s very happy.

Monday was also an emotional day as my daughter, Jennifer, began having contractions, with her baby not due until July 15th. The doctors got labor stopped, and after a night in the hospital, we are grateful to report she is back home and on bed rest for a few days. One silver lining - it was a thrill on Monday night to hear the baby’s heartbeat over the phone, as a fetal monitor was attached. One of the tests in our circumstances right now is that it’s virtually impossible for me to leave Craig to see Jen, as she and her husband Frank live near Fort Lauderdale, Florida, a 3-hour plane ride away, and she is also on travel restriction.

Our oncologist Dr. CJ Nock and his nurse Sandy Dye stopped by for a “home visit” on Tuesday. They had expected Craig to be on his deathbed by now and were amazed that he was up and wheeling himself around the house in his wheelchair and looking great. They continue to be special members of our team. Craig thinks CJ and I should write a book about some of our experiences. Time will tell… Kim, our hospice nurse, also checked Craig out yesterday, and all vital signs are normal.

So, I’m back grocery shopping and we are enjoying each and every day. We have been giving away Craig’s memorial music CD to visitors and simply asking people to enjoy the music/Craig’s singing and ignore the message on the back cover that says his soul has passed on! We are doing our best to trust that Craig is in God’s hands and that there is a larger plan at work for Craig that will manifest as we go through the next period of time. Is the tumor growing and spreading? Is it shrinking? Will Craig live for awhile longer? Will he die soon? Literally, God only knows…

Love, Susanne (and Craig)

Photo Catchup through Mid-March 2009

2009-04-07T12:10:00.000-07:00

I seem to have finally got the website server setting fixed so I can now share photos with you, so enjoy! These are up to mid-March 2009.

www.claricomm.com/Craig&Family_Jan-Mar_2009-Slide_1.pdf

www.claricomm.com/Craig&Family_Jan-Mar_2009-Slide_2.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_1.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_2.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_3.pdf

www.claricomm.com/Healthcare_Providers_2008-2009.pdf

Susanne

Cornmeal Mush and Artwork – 4-5-09

2009-04-05T20:04:00.000-07:00

Craig and I are developing a unique blend of fill-in-the-blank efforts and charades to accomplish communication as his speech deteriorates. He still understands most things and recognizes everyone, but the expression of thoughts is often a challenge. Friday morning he woke up thinking about a food from his childhood that he wanted me to fix but couldn’t tell me what it was. He was able to tell me that Bob Evans restaurants serve it, however. So, John Dare, our caregiver for the day, looked up the menu on the Internet and read it all to him until they figured out it was cornmeal mush he wanted! Having no idea it was a childhood comfort food, I’ve only served it about once in our marriage…make that now twice!

On Saturday morning, I began sorting through a pile of memorabilia that I’d set aside weeks ago. Included in the pile was a large portfolio that I hadn’t looked in at the time. It turned out to contain artwork that Craig did (and some I had done, too) during an Art as Prayer class taught in 1999-2000 by Barbara Trauger-Querry, who is now our hospice art therapist. We had forgotten about the class and the artwork, and the pieces are wonderful. Many of the paintings Craig did to illustrate poetry that he had written. It’s amazing to see that his style was very similar to what he is now doing left-handed in art therapy. Craig has gone through the paintings multiple times all weekend, savoring the fruit of his creative expression. I’ve re-read his poetry to him as well.

It’s been a quiet weekend for us, with lots of couple time. We had multiple visitors on Friday – Jon and Aunticlare Rezin from Los Angeles, Jennifer Rezin Botte and her daughter Gabrielle from Columbus, and Shamsi Modarai and boyfriend Rickie from Toledo. Jon (who works on the American Idol TV show) helped us with some of the production work on Craig’s new CD and spent time “jamming” with Craig on Friday. It delights Craig to see some of the young adults who grew up with his children or at youth conferences he staffed and who we have watched grow up into wonderful adults. We had no visitors Saturday. Two friends/practitioners did Reiki sessions with us today, and a neighbor dropped in briefly. Craig is now talking about appreciating having more quiet, meditative time again.

Craig woke up on Saturday having lost the partial use of his right leg that he did have. So, we have turned the steroid level that was ramping down back higher again. The more we keep the brain swelling down, the better his quality of life, so it just is the way it is.

I know everyone would like to see some photos – we are overdue to post some. We are having server problems. I’m working on it…

Love,

Susanne

Wedding, Sunshine, Music - 4-2-09

2009-04-02T11:13:00.000-07:00

We have had an uplifting few days, and it’s time to share.

On Friday, Craig’s niece Holly Tolles drove over from Pennsylvania to spend time with Uncle Craig doing impromptu music together. She brought her flute and violin, and Craig used the Native American Rain Stick and various homemade instruments that we’ve put together for him. It was such a joy to hear them playing together.

On Saturday, Nik Tressler came and spent the day having a great time with Craig and to give me a respite day. I went out to John and Laurie Cunningham’s and was blessed with John creating a guided mediation to help me through the upcoming weeks/months. Laurie and I went shopping for stuffed animals as comfort tools, and we had a great time hanging out in Toys R Us hugging them.

On Sunday, Craig’s son Dave and Christina held their Baha’i wedding ceremony at our home. We had a few immediate family and close friends for a lovely and lighthearted celebration. Dave fulfilled on a promise to his wife by singing along with the Beatles' song "When I'm 64". Craig was asked to be the representative on behalf of the Spiritual Assembly of the Baha’is of Cleveland Heights, and he carefully printed his name with his left hand on the certificate. Craig was so happy to have this occasion happen and was moved to tears at the end. His energy was good throughout and even high enough for us to go out to dinner with everyone afterward. When we got home, there were surprise anonymous flowers in the mailbox, including a bunch of my favorites – daffodils.

The morning before the wedding, I was going through the paper and reading to Craig what I thought he’d been interested in hearing. We both ended up moved and in tears with columns from our favorite Plain Dealer columnists. The themes of family, cancer, death, and love between parents and children were very poignant for us that day, especially with the wedding coming up. Here are the links to the columns:

http://www.cleveland.com/brett/blog/index.ssf/2009/03/grandsons_birth_means_its_time.html

http://www.cleveland.com/schultz/blog/index.ssf/2009/03/the_nagging_fear_of_not_being.html

Friends Nahed and Philip Squires from Canada came in Sunday evening and the next morning, so we had fun catching up with them and putting them to work as well! Craig’s daughters Michelle and Leah and granddaughter Karida stayed through the end of Tuesday, so we were full up with love and joy.

One of the highlights of this time with the “girls” was music. Saturday evening Michelle and Karida stopped by before going to stay at Dave’s home for the night, and Karida and Grampa did a half hour jam session with various real and home-made instruments. They had a blast! On Tuesday, we had our first session with the hospice music therapist while “the girls” were all there. Leah and Michelle used our songbooks to sing songs remembered from childhood, Karida led the group in impromptu rhythm and kept redistributing the instruments, we all sang, and just had a relaxing fun time together.

We have finished producing the memorial/memento CD of Craig’s music that has been in progress for weeks. The intent was to have them available at the funeral with a donation box next to it to cover production costs. However, we are already so busy giving them away we may have to order more for the funeral! We are so grateful for the assistance of Craig’s daughter Michelle, neighbor Frank Rodgers, friend Joyce Ashman, and friend/music producer Jon Rezin with all the work to get it together.

Yesterday afternoon, Craig and I took advantage of the warm spring sunshine and drove to a local park that overlooks a beach and Lake Erie. We stayed for about an hour and a half eating Wendy’s chocolate Frosty’s and watching the water, birds, and kite flying. It really took us full circle, as we lived for the first year of our marriage in an apartment that overlooked the lake. We then went out to dinner, where Craig had what he called the “best liver and onions” he’d ever eaten! We had a great waiter who patiently read the menu to Craig, arranged for his meat to be cut up, and served us well. People held the doors open for us and helped to get Craig situated at the table with his wheelchair. Abundant helpfulness. So, it was a date night out for me, too!

On the physical side, Craig’s speech is getting more adventurous to decipher, but I’m doing reasonably well at it. We have stopped the shots that inhibit blood clots from forming and the antibiotic that he’s been on for 18 months. His sleeping pill has stopped as well. We raised the steroid dose way up for the wedding weekend to maximize Craig’s speech and energy. Now, though, he doesn’t want to be taking any more drugs than necessary, so we are ramping the steroids back down to a maintenance dose. They will help to prevent seizures, so he’ll likely keep taking some. Some days he is still steady with walking short distances; other days with fatigue and leg swelling he’s unsteadier. I’m definitely getting more sore muscles with trying to keep him balanced, needing more support on transfers, and more trips up and down the ramp in the wheelchair (instead of walking in and out of the house). I’m still swimming and doing Chi Gung to stay in shape. We have increased the caregiver hours somewhat, but not significantly yet.

Craig had been talking about being committed to dying this week, but when we all started focusing on that, he finally got exasperated on Tuesday and said he wasn’t going to after all. It will happen whenever it happens! He was then a little disconcerted and sad to discover that the angels didn’t show up in his bedroom that night as usual! So, we teased him about their feelings being hurt when he said he didn’t need them after all! People have been starting to give Craig commissions of things to accomplish in the next world on their behalf. He is also getting a bit exasperated with that, saying he needs time to get acclimated there first and see how it all works. He finally said on Tuesday that he at least will need to know where the gas station is before he can go to work!

So, we are openly talking about all that is going on. As usual, I’m doing more talking and Craig doing more listening :-). And, we are in peaceful space together.

Love,

Susanne

The Layers of Our Home – 3-29-09

2009-03-29T20:22:00.000-07:00

Craig asked me this morning how I was. I responded that I felt a bit strange about it all and then proceeded to share with him a verbal tour of our home so he would understand. In the basement, his burial shroud was in the washing machine. On the next level up are the bags of adult diapers and protective gloves etc. that Hospice delivered to us on Friday. On the next level was the preparations for his son’s Baha’i wedding that happened at our home today (we’ll share more on that in another posting). Upstairs are the tools that I’m gathering to help me with the grieving process and all the final items and preparation efforts for his funeral. And, on the desk, the bills waiting to be paid. So many layers of experiences and emotions tied up in all these. Tears, fun, joy, sorrow, resistance, anger, exhaustion.

Bedtime,

Susanne

Medication Changes, 3-25-09

2009-03-25T19:44:00.000-07:00

We consulted today with members of our medical advising team about Craig’s challenges with communicating and what medication adjustments might make sense. Our goal is for him to have the maximum possible ability to interact and communicate with me and with his children, who are arriving this weekend for a few days. So, at least for a time, we are significantly increasing Craig’s steroid level to attempt to reduce the brain swelling around the tumor. We are also eliminating his sleeping pill so that he freely sleeps and awakes as he needs to and hopefully has reduced grogginess and cloudy thinking.

Craig is still very focused on passing on to the next world in the near future. He has begun to sense the presence of souls gathering in the corner of his bedroom to accompany him there. Sometimes the steroids get him pretty lively though, so we’ll see what happens! He continues to be in a very peaceful inner state.

Love,

Susanne

p.s. It’s an interesting contrast for me today while Craig was so quiet. I edited the funeral program, attended a house foreclosure prevention seminar, and chased down financial stuff. My goal after tomorrow is to set aside most of the rest of the financial stuff until down the road aways. We’ve done the vital matters that needed Craig’s involvement. The taxes are signed, and the retirement funds handled. I’ve got an excellent advisory team in place – accountants, real estate agent, bankers, life insurance agents, and financial planner. And, we’ll work it all out step by step as needed.

Craig's Journey Reflections - March 23, 2009

2009-03-23T19:21:00.000-07:00

Dear family and friends:

At times, Craig wishes he could communicate more directly with you. Yesterday, he requested that I type his words…and then edit them. The challenge with you seeing the edited version, is that you don’t get a sense of the difficulties. Craig is struggling to find the right words, mixing up words, getting dates wrong, and losing his train of thought mid-sentence. Sometimes he is frustrated, and sometimes we lighten the moments up with humor. And…he still wants you to hear his voice. So, below is the cleaned-up version of what’s on his mind to share:

“I’ve been reflecting lately that my feelings are very different in the three stages of this journey.

“The first part of the journey incorporated immense elation as I found that I was very hopeful that I would in fact have a long-term survival. The main reason was the 100% resection of the tumor, and although there were a few incidents with infection, there was no tumor recurrence for a year. There were big positives – one was the spiritual elation of this successful surgery, and there was the overall sense of getting to a new level of spiritual connection to God.

“The second part of the journey was a bit of a disappointment that in fact there was recurrence of the tumor, which made things in a very different light. I recognized immediately that recurrence decreased my longevity. As we started into this stage, there was a clear sense for myself that the surgery and infection associated with this phase was very, very hard and reduced my functionality. I could have chosen to die at that point. I made a conscious decision to stay around for awhile to finish handling some issues for both Susanne and my Mom. My sense is that both of those issues have now been handled, which I’m grateful for. In the fall of 2008, a further treatment started that initially looked positive. It was both an established type and experimental. Initially there were hopeful signs. However, a further MRI in February showed that the tumor was back, and I could tell from my symptoms that there was further spread. At that point, I suspended treatment.

“The third part of the journey has begun now that we have started meeting with hospice. Much more noble, quiet, and less frantic. I’ve found my body shifting to work more that direction. I’ve stopped going to the rehab center. It was no longer consistent with what I was trying to do. I’m still doing exercises at home on my own though. I’ve set up a music corner in my bedroom, and we have started doing art therapy, which is very wonderful. We have had two sessions of that. My active goal is to be as coherent as I can be and be here for March 29th when my son has a Bahá’í wedding ceremony planned (he had a civil ceremony 2 years ago). I have no established goals beyond then. What will happen after that I don’t know. I plan to remain active as best as I can and my focus is on the quality of my life. I’m spiritually preparing to embrace the journey to the next world.”

Love, Craig

And from Susanne again: Craig and I are floating in quite mellow space. He often spends time playing or listening to music in his new bedroom music corner. His wheelchair faces the window, which overlooks the woods. In the distance, he can see Lake Erie and loves to watch the sun set on the water.

Craig still welcomes individual friends and small groups, but turned down going to two Baha’i New Year’s parties this past weekend. We are home-focused and peaceful. Friday’s art therapy session had Craig drawing his soul as a bird headed towards an empty space depicting the “next world”. My painting showed ever-widening hearts and waves of peacefulness (interspersed with occasional jagged lines depicting all the hassle with finances!). Tonight we began a new study circle base on reading and discussing Reflections on the Life of the Spirit. (Our previous group finished the book last week after a year together and they voted to begin again and invite others to join!) What a blessing it is to have the accompaniment of such dear friends.

We so appreciate all the love, prayers, and friendship that surround us.

Love, Susanne

Transition from Outward to Inward Focus - March 19, 2008

2009-03-19T19:45:00.000-07:00

Family and Friends:

Today was another transitional day in a week of gradual change. Craig shifted from adamantly insisting on continuing to go to Rehab two days a week to wanting to be home. So, today was his last day there with a staff who dearly love him. He noticed how much energy it was taking to go and be there all day and that he now needs to focus his energy inward and at home instead. Both of us shed tears today as we felt the loss of what was and knew that the next stage was arriving. Our services with in-home hospice and caregivers will now increase.

Craig is largely unable to read now, and he asks me each day to read to him of death, dying, and life after death. The Gathering Place has provided us with some wonderful, helpful books. We’ll delve into the Baha’i teachings on the topic as well. It’s a time of beginning to understand and experience what dying can be like. It’s scary, sad, and yet peaceful and hopeful as well…for both of us.

Last night Craig met with someone at The Gathering Place who helps to support those with advanced cancer. Today I met with a social worker from there. We are dealing with a swirl of emotions and changes and appreciating the support.

I’m exhausted…it’s bedtime.

Much love,

Susanne

Celebrating Life and Facing Death; 3-15-09

2009-03-15T15:31:00.000-07:00

The gathering held last Sunday to celebrate Craig’s life, which many referred to as a “farewell party”, was absolutely wonderful. Generous friends created the occasion and hosted it, so Craig and I were able to attend simply as honored guests. We estimate over 200 people streamed in and out enjoying the delicious food, photographs, flowers, and socializing. At the same time, a continuous line of people approached Craig for a precious few minutes of connection. He started greeting friends at about 2:20, and the line finally finished up around 5 p.m. Craig’s employment with Radix Wire ended as of March 1st, so we joked about this also being his “retirement party”!

We felt that the diversity of the friends and family who came were beautifully representative of the unity Craig has dedicated himself to creating throughout his life. Bahá’ís, Christians, Muslims, Jews, and others I’m sure! Black, White, Hispanic, Asian, Iranian, French, and many others. Family came from various places. Friends came from Toastmasters, workplaces, marriage community, our neighborhood, Landmark Education, cancer support groups, and more. But the overall theme was simply LOVE! In abundance.

Craig slept for two hours after the event and recovered his energy over the following couple of days. He is still attending the all day therapy at Euclid Rehab on Tuesdays and Thursdays. He continues to lose speech and memory, but overall is very peaceful and still enjoys being with those he loves. One of the party visitors stayed with us and recorded Craig’s favorite prayers on his MP3 player, so that is wonderful for him now that reading is much more difficult. Another visitor this week was Barbara Trauger-Querry, a long-time friend, Bahá’í, and our art therapist with hospice. She got us both painting and exploring where we are right now…transitioning, growing, grieving… We met with our hospice spiritual care person, Aimee, for the first time as well, sharing with her the Bahá’í views on life after death, so she can support us with those.

It’s been a mixed week for me – the stress of dealing with a myriad of legal and financial tasks has been ever-present. If I had it to do over again, I’d have hired a financial planner when Craig first got sick. It’s definitely harder dealing with things now and wondering about all the possibilities for how to support myself once Craig’s disability income ceases. But, denial of the reality won’t make it go away! Friday was my 53nd birthday, and that was a peaceful, loving day. At the end of the day, Craig and I shared phrases from our love letters and had time together. Good news came this week from my daughter Jennifer that her baby is healthy, growing normally, and a GIRL! Giuliana (pron. Juliana) Alexa DeMaria, likely due around July 15th.

So, we are spending quality time with one another and those we love, both family and friends. When Craig rests, I do as well – at least briefly! – and then tackle my endless to-do lists until he awakes. We often sleep late and eat whenever we feel like it. Last night we watched the movie Fireproof, a powerful and moving drama about marriage. This afternoon we sat out in the driveway in the sunshine with a friend--spring has been early this year. And, we just take life one day at a time.

Love,

Susanne

The Zone of Receiving Divine Love – March 1, 2009

2009-03-01T15:23:00.000-08:00

Throughout Craig’s illness, we have had the blessing at times of being with a wonderful woman who is both a medical intuitive and who also has the gift from God of deep connections to the spiritual world around us and insights about what is happening. Some of what she shared with us on February 17th may be of interest to you and may be of assistance to those of you feeling anxiety about us.

Julie encouraged us to recognize that Craig and I are still putting out a great deal of energy but that we need to be far more tuned into receiving the universal love that God provides, to be in a “Receiving Zone”. The more we are tuned into this force of love, the more cushioning there is from the “rawness” of this experience. She said she could see that Craig is focused on maintaining the steadfastness of his faith and that I’m focused on radiantly accepting or acquiescing with what is happening, but that it will help both of us to “shift our lens to receiving mode,” both love from God and from others. As we do this and don’t fight the current of the Will of God, we will learn more and be unified together. First comes love and then comes knowledge and truth. So, we have been dancing with this concept in the days since and starting to feel its effects. We invite you to include in your prayers that we be successful in making this shift in viewpoint.

Julie reminded us that the process of leaving this world can be like the transition stage of giving birth. Women in that stage are assured and prepared for birth and enthusiastic, but then have personality shifts and begin to swear, beg for drugs, and want to stop the process and check out of the hospital. Craig will have his private soul times of grappling with his fears, but this is part of the sacred work for him to do at this time. God’s Grace and support in waves will accompany his transition. She assured me that the grieving and emotional work of the last two years will help me to not fall apart or have extreme severity in the grieving time after Craig eventually passes. The descriptions I have been reading about being a widow have been a bit scary (!), so this was lovely reassurance to hear.

Julie encouraged us to breathe (something I keep stopping doing when it’s a bit too busy and the to-do list seems overwhelming!) and enjoy this goodly period, to take advantage of every moment. It’s going to all work out. The learning from this time will stay with me the rest of my life. People have been amazed at our calmness in planning Craig’s funeral over the last weeks – Julie said there is a shield around us in the process that is helping us do what needs to be done. [Working on projects together is also very much a part of the culture of our marriage!] As we travel this unfamiliar path of accompanying Craig while he lives and engages in the myriad of relationships that surround him, we have many wonderful helpers. And many offers of help. I have done an excellent job of asking for and receiving help, but I know I still have much growth to do in this area. As the to-do list overwhelms me at times, I can tell I sometimes need to expand my circle of helpers. [And I delegated a great team to handle Craig’s upcoming party!]

Of great assurance to us were Julie’s words that indicated all is going to come in the right order and that everything is in the right order for the two of us and everyone involved. She noted that it is extraordinary for her to see that in us there are “no strings that are hanging out, no strand is out of place”. Craig and I have been very committed with each other and with our family to ensure that what has needed to be said and done actually happens so that each relationship is “complete”. It was good to hear that we have done well at this.

In the middle of all of Julie’s wonderful spiritual assurances, she also always shares some of the very practical details that help balance my wellbeing, so I’m heading into a few dietary changes to help with managing the effect of the stress on my body. And on the emotional side, I’m preparing a keepsake memory book that will be helpful in the times to come. I had the blessing of a respite day recently at a dear friend’s home and spent much of the day re-reading the printed email messages from our time of courting. For Craig, Julie says for him to just keep eating whatever makes him happy!

Love,

Susanne

Explanations and Party Invitation, 2-27-09

2009-02-27T05:27:00.000-08:00

Dear Family and Friends: As you can imagine, the last two weeks have been a veritable whirlwind. We have done our best to communicate, but feedback is letting us know that there are a few gaps! We hope this message will be helpful for closing in some of these gaps and settling some anxieties.

Despite concerns, Craig is not on his death-bed. And we apologize if we conveyed any sense that this was the case. Nowadays when someone goes into the hospice program, they can have days, weeks, or months (sometimes even years) to live--hospice ensures that this time is very rich and full. On Wednesday, Craig and I, along with daughter Michelle and son David, met with the nurse and social worker who will lead our hospice team. Over the next few weeks, a spiritual advisor, art therapist, and music therapist are expected to join the team along with a volunteer visitor and a care-giving aide. It will be wonderful to have on-call support, along with all the emotional, spiritual and physical sustenance we have been receiving from all of you through this journey.

Craig, as has been the case throughout his illness, is in very good spirits (and dreaming of miracle cures!). (But Craig requests that we not receive suggestions for miracle cures.) He’s even more spiritually peaceful and content now than ever! The steroids and the gradual elimination of the treatment drugs from his system are helping Craig to feel better, increasing his energy, strengthening his right leg, and improving his speech. We know all the prayers are also supporting him very much, and we thank you all for them. He is enjoying connecting with family and friends who have been visiting. Recordings from Craig’s past singing have surface; his soul is touched to hear the music. (We are still looking for more recordings, though, if you have any.)

As we have mentioned, Craig and I have been working in partnership to create the celebration of Craig’s life that will be his funeral service, when the time comes. It has been an honor to be with him on this journey and this phase of his life and I wanted to make sure to get his input on what will be an important transitional event as he moves to the next stage of his life after this one.

While this is a very hard time for all of us, we are celebrating his life and we invite you to join us in a Celebration of all that Craig has given us. This includes his intense love for people that we all feel, his musical gifts which he shares with complete generosity, and his intense desire to help everyone who crosses his path. Here are the details of the light-hearted Celebration we will be hosting (remember that daylight savings time switches early that morning!):

Invitation:

Purpose: Open House to spend time with Craig Farnsworth (and Susanne Alexander!), Craig says, “I’ll love to see you!”

Date: Sunday, March 8, 2009

Time: 2 p.m. to 4 p.m.

Food: Light refreshments provided

Where: Lakefront Community Center, Euclid, Ohio

What: Fun event to connect with Craig and all who are blessed to have him in our lives! Come and stop in briefly or stay the whole time – bring with you memories and fun stories and let’s celebrate Craig!!!!

Directions: From I-90, go north on E. 222nd Street (or Babbitt, which merges with E. 222nd). Go through the traffic light at Lakeshore Blvd. past the new CVS store, past the sewage treatment plant (yuck), and the road ends at the Community Center/Lake Erie (yay!). Address is 1 Bliss Lane, Euclid, OH 44123

Please DO NOT r.s.v.p., just come if you can…

Love Susanne (and Craig, with help from Michelle)

p.s. And for those of you who get concerned about these things, I’ve handed the planning and coordination and hosting of the event over to other people so I don’t get too exhausted… S.

Adjusting Period - 2-19-09

2009-02-19T06:55:00.001-08:00

Craig has now given me leave to use the blog to post occasional journal messages just from me. We know that people will be watching the blog more closely in the weeks to come.

On Saturday, we posted the news of Craig’s condition very widely and have received hundreds of messages back. We feel so blessed to have a bubble of loving prayer and friendship encircling us.

The days since Friday’s news have been very emotional. We have shed many tears while absorbing this new change. While we know that the transition to the next life after this is a joyful one, grieving loss is also natural. Sunday had some happy and sad moments as we worked with friends Nik and Debbie Tressler to get the funeral program planning mostly finished and music chosen. It was great to listen to music together and remember all the singing Craig has done over the years. (Craig’s daughter Michelle is on a hunt for recordings of her Dad singing.) Craig asked me to read him the eulogy that I had written for his funeral – that generated sobs in him and tears in the rest of us. But, it was good to share and know that the content worked for him.

Part of what’s weird right now is reversing the flow of drugs and supplements. I’ve spent so long building up Craig’s body and minimizing symptoms with medications that to begin eliminating them so that his body begins to wind down feels very strange. The one that I think will be the toughest when we run out of it is the anti-clotting shots. We are down to one a day versus two and won’t refill the prescription when it ends in March. He will stay on the anti-seizure medications and steroids, however, because that will help to provide quality of life.

We have met with a representative from hospice. They will provide in-home support with a visiting nurse, aide, music therapist, art therapist, etc. to help us keep Craig at home as long as possible. He may even be able to pass to the next world at home. If that doesn’t work, then Hospice House is an in-patient facility on Lake Erie near us that would provide Craig with a place to stay. Their goal is to help Craig be comfortable but not engage in extreme life-extending measures. Hospice nurses often become deeply involved with pain management. We are grateful that pain is not usually an issue for brain cancer patients.

Craig’s son Dave and I met with a social worker at The Gathering Place yesterday to talk through how we are doing and how he and I can work together in support of Craig over the coming weeks. He’s our only child who lives locally. He came over tonight and enjoyed a movie and ice cream with his Dad while I got other stuff done, so good for all of us. Coworkers of Craig’s from Radix Wire (Sylvia, Flo, and Dottie) brought lunch and ice cream over today, so the guys enjoyed Overload Peanut Butter Tracks together .

Craig’s Mom, sister Nancy, and brother-in-law Bob came in from Pennsylvania on Monday for a lovely visit. It was the first that Mom knew we were funeral planning, and that was hard for her to hear. But we had a meal together, companionship, and love. (And Bob even did fix-it jobs for us – yay!) We are also enjoying a stream of loving friends coming to visit. Each one triggers wonderful memories for Craig, which is making him feel very happy. Ban Twaddell came over on Valentine’s Day to share roses from he and his wife Ruth. Today was Krsnanandini Devi Dasi and her husband Tariq Salim Ziyad, friends and fellow marriage educators. We are also finding excellent support through groups at The Gathering Place. A member of Craig’s group last night sang a song he composed and dedicated to Craig and was accompanied by another member playing the flute. More joyful tears.

Craig is experiencing increasing numbness in the right side of his face and having occasional times of choking on food. He’s still successfully walking most of the time as needed for short distances, but feeling shakier and getting occasionally unsteady. We had been using just the stairs and rarely the wheelchair ramp, but we are back using the ramp much more. The steroids are increasing his energy some, but I’m shifting them around with the doctor’s permission so they don’t disrupt his sleep. We are learning what dosage will be best to help functionality without causing too much personality change.

So, it’s been a very full period…I’m tired! Sleep has been a bit tougher and there’s been less rest with very busy days. But, I’m working on finding some balance.

Love,

Susanne

Cancer Spreading; Hospice Begins, 2-14-09

2009-02-14T07:28:00.000-08:00

Dear Friends: We are writing to share with you the news that we are transitioning to the next stage of our journey with Craig's cancer diagnosis. On Friday, our oncologist shared with us the difficult, although not totally unexpected, news that the tumor has continued to grow and has spread to the temporal lobe of Craig's brain. These MRI results explain why his speech and memory have begun to be affected in addition to the motor symptoms he was already experiencing. We made the decision for Craig to stop taking the anti-cancer drugs, since they were not effective, and we have now exhausted all treatment options.

The next stage in the spiritual and physical journey is focusing on preparing for the next life after this one, and our efforts will include using various hospice services as needed (http://www.hospicewr.org/). We will work in partnership with our care team to maximize Craig's quality of life. This will include some drug changes, such as increasing steroids to reduce brain swelling and help him to communicate. As you know, Craig's attitude has stayed positive throughout this journey, and this is not changing now. This approach has clearly strengthened his health and lengthened his life. The doctor continually expresses amazement at how good Craig looks, the quality of his life and choices, and the strength and effectiveness of our partnership in meeting this challenge together. (He commented during this visit that he wished he had been videotaping our visits to be instructional to others!)

Of course the length of Craig's time physically with us is very much in God's hands. Yet, we see that the sunset of his life here is approaching. We welcome your prayers and support as we go through the joys and challenges of the coming time. We will keep you updated as we can, keeping in mind that Susanne will be focused on Craig's care, but please check the blog as well for recent news: http://www.factbasedspiritguidedpath.blogspot.com/

With much love,

Craig and Susanne

p.s. Happy Valentine’s Day!

Update - Time of Change - January 25, 2009

2009-01-25T17:51:00.000-08:00

Dear Family and Friends: It’s been almost a month since we last posted an update and it’s time to let you know our current situation.

January has been a month of re-assessment, as Craig has left home therapy and re-entered outpatient therapy. He’s been poked, prodded, tested, and evaluated by physical, occupational, and speech therapists. He has regular homework from them all, too! He began with 1-hour long sessions, but has since transitioned into a special “Neuro Day Program”. This involves him going to Euclid Hospital’s Rehab center every Tuesday and Thursday from 9 a.m. to 4 p.m. There are group activities, meals together with other participants, and individual and group sessions with a social worker and a psychologist, all in addition to the three types of therapy. So far, this has been a very positive experience and helps to relieve Craig’s boredom! And, it gives Susanne some time to accomplish a variety of tasks.

We’ve both been processing and reaching acceptance that Craig is not likely to be able to work again. His company is discussing severing his employment in February, although they have worked with us to preserve his benefits. The long-term disability from them will continue, but we are also being required to file for Social Security Disability.

Physically, January has been a bit of a challenge. Craig has fallen three times, twice requiring the paramedics, as Susanne was not able to lift him back up. The right leg has been buckling under him periodically, often making him unsteady. All of this has placed higher physical demands on Susanne, as well as prompting her to increase her cautiousness, much to Craig’s annoyance!

Mentally, it’s clear Craig has slipped backwards. Dialing the phone or processing numbers at all is tortuous. He often loses track of the sequence or order that something is supposed to occur in. Reading and speech have slowed down somewhat, with difficulty in finding or saying the right word at times. His short-term memory has become poor. Susanne took a mental/emotional/spiritual/physical health break and went on retreat the weekend of January 9-11. Nik Tressler stayed with Craig. There was a foot of snow all weekend, so that facilitated hibernation by all of us.

We (and the doctors) are uncertain whether the deterioration that is occurring in Craig’s condition is side-effects from the medications, whether the tumor is on the march again, or a combination of both. February 13th will be the next MRI and doctor meeting, and we’ll consult our medical intuitive on the 17th. Hopefully, between the two, we will get some indicators of what is occurring and be able to choose our next steps. In parallel, Susanne has broken out in a stress-induced very itchy rash, which thankfully the doctor is now medicating.

We are aware that at some point in this medical journey, Craig’s funeral may be what we are facing. Initially, Craig did not want to be part of contingency funeral planning, and Susanne was doing it behind the scenes. He has now requested to participate as best as he can so that he helps guide the service that will honor his life and service. We are planning as many of the details of it as possible now, and then we plan to set it aside until such time in the future the work is needed. Obviously, the outcome and timing for Craig is in God’s hands.

In the meantime, we are staying busy visiting with family and friends (we encourage people to be in contact with us and set up time to come visit), watching movies (we have joined www.blockbuster.com), eating well, napping, reading, getting to The Gathering Place when we can, hosting a spiritual study circle, and preparing the 2008 financial reports to get ready for taxes. Susanne is grateful to have Craig’s input as she does this activity for the first time on her own. We are praying together and doing our best one day at a time.

Love,

Craig and Susanne

Craig Update and Unpeaceful Christmas Season Update - Dec. 30, 2008

2008-12-30T15:20:00.000-08:00

Dear Family and Friends: I’ve been reflecting on where I am these days and want to share how I’m doing physically, mentally/emotionally, and spiritually.

PHYSICAL:

I still have virtually no ability to move my right arm and hand. I have regained much movement in my right leg and a little movement in my right foot. I am getting better at walking up and down stairs with someone helping me, both inside and outside our home. At times now I go down the inside stairs to the garage and car instead of using the wheelchair down the ramp. A neighbor put safety bars across the top of the basement stairs to protect my safety on this route. I will finish in-home physical therapy January 1st and transition to outpatient therapy. I continue to have a significant amount of fatigue, primarily as a side-effect of medications, and therefore take two naps a day and sleep a full night as well. The fatigue and fogginess are affecting my reading ability at times. I seem to be best able to cope with light novels right now and read much slower than I used to.

MENTAL/EMOTIONAL:

I’m very frustrated by not being able to use my right arm and hand at all. That functionality was lost after the last seizure episode in October. I’m grateful the progress with the leg is continuing and I’m able to get around the house better and get out more, such as for dinner at restaurants or to visit friends. My former ability to be very sharp with numbers has been slipping, making it difficult at times to dial the phone and remember key numbers. I totally made up a new social security number this week for the rehab center! I have not worked since mid-August now, which is difficult and frustrating, but unfortunately necessary. I’m now starting to face the prospect of never working again, and I don’t welcome that. I’m grateful to still have enough cognitive ability, though, that I can discuss things with Susanne and help with making family decisions.

SPIRITUAL:

I continue to experience a state of calmness and serenity around what the ultimate outcome of this journey may be. I am NOT giving up the fight, but I also recognize that this journey may include my soul passing on to the next world. I continue to remain in a state of prayer and meditation regularly. It has truly become a part of the ongoing fabric of my life. Susanne and I have resumed having morning prayers together each day, including saying the Baha’i Long Healing Prayer together most days. I struggle at times with the words, but for the most part the prayers are still flowing for me. I’m still occasionally able to sing a prayer as well. We are having an interfaith spiritual study circle at our home regularly, currently with a focus on the Baha’i teachings about life after death, which is supporting my spiritual journey.

CHRISTMAS WEEK:

We had expected this time to be very quiet and restful, as no visitors were here, and we had no plans to go anywhere. Instead, we had three events that occurred to liven up our days and make them less than restful.

1. On the 24th, an ice storm caused our power to go out during the night, so we awoke to a very cold house. Due to the imminent holiday and small number of work crews on duty, the power company was unable to give us an estimate of when power would resume. In case the outage lasted through the Christmas holiday, we made arrangements for me to move to a nursing home. We got part way through checking me in there when the power came back on, and we returned back home. At least I got a free lunch from the deal!

2. About 10:30 p.m. on the evening of the 25th, Susanne said goodnight to me downstairs and went up and turned her bedroom light on. Very quickly, the whole upstairs filled with noxious fumes. She called 911 and got me up and dressed. The fire department responded promptly and determined that the problem was with the compact fluorescent bulbs in the overhead light fixture, which had begun to melt. On checking later, it was clear that the decades-old fixture was defective, and we are now replacing it and checking all the original light fixtures we haven’t already replaced with new ones. Unfortunately, Susanne has been having episodes of vertigo since then, which may be connected to the toxicity. She is seeing our family doctor and undergoing tests and medication. Dave Farnsworth filled in for her today by taking me to my cancer treatment and then out to lunch.

3. After months of issues with our main business computer, we finally had a service reformat the hard drive of it and get it updated. It took hours on the 27th for the gentleman from the service company to then get it and our network back up and running properly.

I think this brings us up-to-date with all of you. We hope you have had a blessed holiday season and that this finds you well and happy.

Craig (with Susanne as faithful typist!)

Craig's MRI - Good News (12-16-08)

2008-12-17T18:02:00.000-08:00

After 2 months on the new drug treatments, Craig had an MRI done yesterday to see if the drugs were having an effect. Because his leg use keeps improving, we were fairly certain of a good report, but it was great to have it confirmed. The tumor has shrunk some since the MRI done on October 13. The doctor was delighted, as were we. Of course the tumor is still there, and treatment is continuing, but nice to have the growth going in the opposite direction than it was, for sure! However...there is a mysterious, doctor-confounding side effect happening from the drugs. For some reason, Craig's eyelashes are growing very long! The nurses were quite jealous! BTW, you can email Craig these days. He is accessing cfarnsworth9@gmail.com. He can’t type much back with just his left hand, but he’s trying. Love, Susanne and Craig

October/November 2008 Photo Montages

2008-12-07T10:06:00.000-08:00

We are doing well. Craig's health has stabilized, and treatment and therapy continue. We had a great Thanksgiving with family, with one turkey cooked inside in a roaster, and one outside in a deep fryer (see photos). This weekend we have caught up on making photo montages of the last couple of months. Here are the links to the pdf files: Hospital_Therapy.pdf Mom_and_Craig-October_2008.pdf Clearing_Ground_for_Ramp.pdf Ramp_Construction_Crew.pdf Wheelchair_Transportation.pdf Home Therapy.pdf Visiting_with_Friends_and_Family.pdf Thanksgiving_2008-Preparation.pdf Thanksgiving_2008-Family_Shots.pdf Thanksgiving_2008-Turkey_Outside.pdf Thanksgiving_2008-Fun_with_Kids.pdf Thanksgiving_2008-Family_Photo.pdf Loving greetings, Susanne & Craig

Calm Period - Update November 8, 2008

2008-11-09T16:29:00.000-08:00

We have been blessed with two fairly calm weeks. Busy ones, but no significant emergencies, yay! Maybe a little concern again about Craig getting pregnant…but more about that later!

There is a constant flow of people in and out of our home, both visitors and therapists. We have realized that few people we know have accessible homes and bathrooms, so best for people to come visit us. We did go see our friend Grace Fountaine, though, who lives in a very accessible nursing home! Rita and Andy Wheeler from Erie, whom we met at the ECAP cancer retreat this spring, stopped by after a trip to the Cleveland Clinic. Nik Tressler spend Halloween eve and the next day with us and Craig, giving Susanne some respite time. They also had a great time using the ramp as a porch and giving out candy. Ban and Ruth Twaddell spent a few hours with us one day, making applesauce and doing various tasks, but mostly having a lovely visit. We even went out to dinner with them…double date night! Dave Farnsworth has been over to work on mowing and gutter cleaning. A crew of local boy scouts and leaders raked our leaves for us one morning. Bill Mable is a new caregiver in addition to LeNore, so we are doubly blessed. Sometimes people visit by proxy, too: Johanna and Steve Wu from Indiana ordered dinner to be delivered…Chinese!

Craig’s arm is still being very slow to recover, so we are now trying acupuncture treatments. He strained a muscle in his right (weaker) leg by mis-stepping down a stair while working with the physical therapist. That slowed him down for a few days. And put more weight on Susanne with helping him get in and out of bed and the wheelchair. It’s been great timing to have the very generous and welcome gift from friends of weekly massages for her! We spent one evening at the Urgicare due to slight swelling and pain on the top of Craig’s head. All blood tests for infection are okay though, and it seemed to just last that evening, thankfully. He seems to be a bit “loggy” – his word – just not quite as mentally sharp as he was, but still cognitively doing amazingly well.

Craig had the second Avastin intravenous treatment on November 6 with no problems. The Accutane pills began on Nov. 7 (20 days with 11 pills a day and then 10 days off). So far, the drug seems to make him sleepy, but both drugs have many nasty side effects listed, so Susanne is in hyper-vigilant observation and emergency-ready mode all the time. The biggest concern with this drug though is birth defects, so Craig had to pledge in writing not to get pregnant while taking it! J

We are continuing our Monday evening study circle focused on the topic of “life and death”. It’s providing the opportunity for Craig and all of us to explore some serious spiritual issues as a group.

Susanne is becoming fairly comfortable now with managing the personal and business finances. It’s complex and time consuming, but she feels it is empowering to learn how to do it. Then if she has to hand it over to others to manage at times, it’s from a position of strength and knowledge and not from panic and weakness. So, that feels good.

We got back to Toastmasters on October 30, which felt great to do. Susanne volunteered as grammarian, and Craig participated in impromptu speaking. We also made our annual trek to the apply farm yesterday and stocked up on apples for applesauce – Craig’s favorite – jams, cider, and more. We splurged on a giant apple fritter from the bakery and enjoyed it outside before leaving. Last year we pledged to do it annually, so it felt great that Craig was able to still go and enjoy it, even if it was in a wheelchair.

So, that’s our current update. We welcome hearing from people and continue to be grateful for everyone’s prayers and visits.

Love,

Susanne & Craig

Cancer Treatment Started (Again) 10-26-08

2008-10-26T19:11:00.000-07:00

Family & Friends:

Well, we’ve made it through another 10 days! Therapy is continuing, the wheelchair ramp is completed, and we now have a home aide three mornings a week. Lenore does both housework and also patient care. Susanne’s exhaustion is lessening.

Friend Nik Tressler stayed with Craig on the 18^th so Susanne had a respite day away at a friend’s home. Craig’s cousin Jim and his wife Sara visited on the 19^th and helped with many tasks around the home. It was great to see them.

We were glad to re-start the spiritual study circle (Reflections on the Life of the Spirit) on the evening of the 20^th that we suspended in July. Great to have everyone back together for a discussion about the journey of the soul.

We finally completed undoing our trusts and signing our wills on Friday...a major accomplishment.

On the 23^rd, Craig’s cancer/tumor treatment began with Avastin targeted at cutting off blood supply to the tumor. Together with the doctors, we dropped the Irinotechan drug, which has many side effects and little proven value. Avastin was administered by IV over a 90-minute period. Accutane will hopefully be approved by the drug company and insurance company to be added this coming week. Craig went through the treatment smoothly. The homecare nurse will visit weekly to monitor for side effects.

Unfortunately, Craig has had three minor seizures over this last week (spasms in the right arm), likely from the growth of the tumor. After the final two on the 23^rd, his medications were increased yet again. His right arm lost a bit of functionality from the seizures, and the medications have made him tired and weak. He’s bouncing back though, of course! Today we worked with friends Cindy and Everett Hall. Cindy made pouches on Craig’s wheelchair so he can carry a water bottle, telephone, and books. Everett helped Susanne with properly labeling our electrical circuit breaker box. They also stocked our freezer with homemade food. Yay!

One significant milestone in the last few days…Craig is back loading the dishwasher and doing the dishes. He figured out how to do it from the wheelchair!

Love,

Susanne & Craig

Home and Tumor 3rd Time Around - 10-16-08

2008-10-18T19:05:00.000-07:00

Family and Friends: From Craig (via his secretary!): This has been a week of many adjustments—both a wonderful week and a challenging one. The first challenge was optimistically assuming that I could enter and leave the house walking, when what I needed was a wheelchair ramp. Fortunately, my brother-in-law Bob Tolles from Pennsylvania and a wonderful crew of local friends were able to construct a ramp on Sunday. The wheelchair itself brought on several challenges, such as negotiating around the house, how to get it into the car, Susanne’s strength in pushing it long distances through the hospital, etc. My first need to be out of the house was Monday for an MRI appointment, which we were able to make. Then on Wednesday, Susanne, my daughter Michelle, and I reviewed the MRI images and held a lengthy consultation with my oncologist and neurosurgeon. The scan clearly shows that there is significant tumor re-growth occurring. We had been preparing for this likely news over the last two months by compiling a list of treatment options to consider once my infection was gone. In the meeting, we narrowed the options down to five possibilities, and on Thursday chose two of them after prayer, consultation, and sleeping on it. I am comfortable with our choice of treatment, which is essentially a mix of three drugs (Avastin, Irinotechan, and Acutane) administered intravenously every two weeks. The first session will begin on October 23rd. The first two drugs are standard treatment for a recurrence and designed to cut off blood supply to the tumor. It is far less common to include Acutane, which sometimes trips the cancerous cells back into a healthy life cycle, but we were spirit-guided to include it, have requested it, and will now see what the doctors say about the safety and workability of the mix. (It is called Accutane and far more often used for acne, so we have been talking about my having a “pimple on the brain”!) In the meantime, our home is a non-stop therapy arena. Home health care includes regular sessions with a physical therapist, occupational therapist, and a nurse. The therapists continue to notice and report increasing strength and healing in the muscles that were not functioning after the last surgery in August. I'm able to walk around the main level of the house at times with my cane. When the therapists are not here, I'm working through a variety of exercises on my own. The blood clot situation seems to be stable with the twice-daily blood thinner shots, and my leg and foot are now rarely swollen. I’m struggling with how tired Susanne is getting while caring for me, and concerned about my mother, who just had a small stroke and is moving to assisted living soon, but overall, however, I’m just very glad to be back home! Craig The rest of the story… I’m glad to have Craig home…and I’m totally exhausted. Because of Craig’s instability with walking and transferring from the wheelchair to the bathroom and bedroom, as well as the continuing weakness in the right arm, I’m very involved in all aspects of his care. I will say, though, that I’m very grateful he has taught himself to do many tasks with his left arm/hand, so he feeds himself, brushes his own teeth, etc. I’m being physically challenged with needing far more upper body strength to handle Craig (210 lbs + heavy foot brace and shoes) and the wheelchair (about 70 lbs) than I have. So, lots of sore muscles and lots of gratitude when someone else pushes him and gets him in and out of the house. We are learning that it takes us far more time to do everything than it use to! And wondering how we will manage getting in and out once the snow comes…the rain this week was tough enough. Many of the things I spent a lot of time doing in the last year, like cooking, just aren’t happening much. There are too few minutes and too little energy to do it. I’m checking into hiring some help and hoping that family and friends will help as they can. Craig has fallen twice since being home, once with a car transfer and once from the bed where I had to have two firemen come get him up off the floor. Craig calls them “slips”, not falls...scary though and adrenaline rushes we didn’t need. With him on the blood thinner, injuries become more serious, so gratefully he was unhurt from these ones. We are in an interesting place of spending time hugely focused on physical things (and me on financial and legal things) and now trying to reconnect with the spiritual and figure out just what is important at this time in Craig’s journey. I have very mixed feelings about what this next round of treatment will bring, but I’m supporting Craig’s wish to still take action and doing my best to be of service to him as needed. Without treatment, Craig’s life would likely end within a short time as fast as the cancer is now growing and spreading. What is God’s will for us in all of this? So, it’s a time of reflection between exhausted moments and we’ll see what each day brings. Love, Susanne

Craig Finally Home! 10-7-08

2008-10-09T03:23:00.000-07:00

Well, after 7.5 weeks in various hospitals, we finally got Craig home today!!! It wasn’t easy figuring out how to get him in the house, but neighbor Frank helped, and we did it. Craig’s very glad to be home!!

So, now let me update you on the last week... Craig is being treated for the blood clots with a twice-daily injection into the abdomen of a blood-thinning drug called Lovenox. Guess what? It's got to continue for the next month. When I expressed concern about being able to do it to Craig, he got the nurse to teach him how to do it. As far as I know, my job is going to be holding the fold of skin and closing my eyes and hoping his aim is good! Craig also had an ultrasound done of his right harm. There were two clots present, but they were surface ones and not serious. His infection appears to be totally gone, so we won't have to do IV's at home. (YAY!)

I've spent a lot of time over the last week attending physical and occupational therapy sessions, getting a better sense of Craig's abilities and limitations. We also got to test out what to do if Craig accidentally falls. After it took three of us helping with Craig participating too, we decided that he is never going to fall, and if he ever does, I'm to make him comfortable on the floor and call 911 to ask for professional assistance. All of my observations then helped me to recruit two friends, Rick and Robin, who worked with me on Sunday to both rearrange our home somewhat and also install safety equipment for Craig. Rick sat in Craig's wheelchair and practiced going all over the main level of the house so we knew what hazards to remove. We set up the guest room bed with a safety bar, removed doors, put a bench in the bathtub, chairs in the toilet room, etc. etc. Then I photographed all of it, and the occupational therapist has pronounced us okay for Craig to come home! Craig has been practicing going up stairs, so going up there to visit is likely, but he is safer "living" downstairs.

On Friday, Craig and I got approval on our ability to transfer him from a wheelchair to the car. On Saturday, we were allowed a brief leave of absence to go a few blocks away to the Natural History Museum for a special exhibit on race. We discovered his being in a wheelchair dropped our admission from $20 to $9 and our parking from $4 to $0! We enjoyed the exhibit, too, and had a good lunch in their restaurant.

On the downside, all this lifting of the wheelchair and pushing Craig around is wrecking some havoc on my body. Lots of painful spots, which also led me to a meltdown yesterday morning. If I cannot manage the chair, we are very housebound. Right now he can only walk a short distance with a brace on his foot and a cane. I've requested that the physical therapist that comes to the house to work with Craig also show me some techniques with handling the chair, and the insurance company has agreed. Frankly the other challenge for me is that for all these weeks, Craig's had a team of doctors, nurses, aids, therapists, etc. etc. looking after him and all his needs. It's confronting and overwhelming to know that the team is now becoming much smaller - me! With help, though, thankfully....

There will be a nurse, physical therapist, and occupational therapist all visiting us regularly over the coming weeks. We don't know their schedule yet. We also hope that people will come to visit us and also give me breaks. I won't know for awhile whether or when it's wise or safe for me to leave Craig alone.

So, we are on to the next stage. There is an MRI scheduled for next Monday, and we meet with the surgeon and oncologist later in the week for the results and to decide what is next for cancer treatment.

Loving greetings,

Susanne (and Craig!)

Craig sidelined with blood clots, 9-30-08

2008-10-01T04:58:00.000-07:00

Yesterday morning Craig was given the green light to come home on Saturday. By noon an ultrasound indicated that he has 9 deep-vein bloot clots in his right leg, he was pulled out of therapy sessions for at least 24 hours, he was put on a blood thinner drug, and was told that leaving to come home is on hold. Deep vein clots are very serious, because any dislodging of them can result in movement into major organs such as the lungs.

If I start telling you how I feel, this will turn into a book! Thanks for your prayers.

Love,

Susanne

2008-09-25T12:23:00.000-07:00

Family & Friends:

Craig is continuing to gain functionality back each day, particularly in the leg. He has a brace for his arm to help support the weight of the arm so it doesn't put so much strain on the shoulder joint. Recovery in the arm has been slow, but Craig's getting better and better with his left hand. He was finally allowed to shower this morning instead of having bed baths - first time since August 16th. The physical and occupational therapy staff now have photos of all the areas of our home so they can ensure Craig will be able to handle moving around in the house.

Both the doctors at the Cleveland Clinic and Craig's own doctors at University Hospital are continually adding to the list of treatment possibilities that he may be eligible for in October. The plan is to reassess his physical state, do an MRI, and evaluate treatment options again the week of October 13th. They hope to release him from Hanna House rehab facility to home on or about October 3.

We had a good week of my mother visiting from Toronto. She and I got some shopping done and took dinner down to the hospital twice for the three of us to eat together. Craig was in heaven with the prime rib dinner in particular! We played Scrabble one evening, and Craig was much improved from the last time we played. The weather has been gorgeous, so he's been enjoying trips out to the garden. Other friends continue to visit him, too, which is good.

I'm continuing the process of ensuring our lives and home and finances are in order and all the legalities are covered. It's definitely a stressful occupation, but I'm doing my best. Keeping up with my exercising is turning out to be smart - pushing Craig up ramps in his wheelchair takes some muscle power! We've been visiting a friend of his with cancer who is over in the regular part of the hospital (big ramp in the basement tunnel) and there is one in front of his building for doing the trip to and from the garden. We were on TV recently about spirituality and cancer, with a segment that was filmed before this last hospital adventure. You can see the brief video clip at this link: http://www.newsnet5.com/video/17516205/index.html

Love,

Susanne

On TV 9-19-08

2008-09-20T15:57:00.000-07:00

3 weeks before Craig was back in the hospital for brain tumor removal, we were interviewed by a local TV anchor about cancer and spirituality. You can see the brief segment at this link: http://www.newsnet5.com/video/17516205/index.html Susanne

MRI Results - 9-17-08

2008-09-17T18:14:00.000-07:00

Craig and I met this evening with Dr. Nock, his oncologist, and Dr. Sloan, his surgeon. They are both happy to see Craig making steady progress and improvement with regaining functionality. The doctors reviewed Monday's MRI images with us, particularly the area around where the tumor was removed. That area looked only slightly different from the last MRI, but not enough to draw accurate conclusions. The change in image could be swelling, healing tissue, still lingering infection, tumor, etc., etc. No one can say for sure. They are going to increase steroids slightly and have added a second antibiotic, but essentially they want him to stay put in therapy, not begin chemo, etc. (which would stop his forward progress in therapy), and wait for 3-4 weeks to ensure the infection is gone and that he has the most amount of time possible to regain use of his arm and leg before starting any treatment. An MRI will be scheduled to happen then, too. We go over to the Cleveland Clinic on Friday for a second opinion. The surgeon delegated removing Craig's stitches to his nurse - to now happen tomorrow. Craig now sleeps with a hand brace to help keep his fingers flat and not curled, and I'm to order him a shoulder brace to help keep his arm more supported. He did receive a pint of blood on Monday to improve his blood counts...that seemed to give him more energy. He enjoyed visits from his sister Nancy's children Zack and Holly on Sunday and Nancy's eldest daughter Nicole and granddaughter Sierra on Monday/Tuesday. My mom arrives tomorrow for few days. Love, Susanne

Craig Progressing in Rehab - 9-13-08

2008-09-14T11:25:00.000-07:00

Family & Friends: Craig is progressing well with the therapy with each day bringing new triumphs. His shoulder, right hand, and right leg all have significant movement. The right foot and right arm are still lagging behind a bit. However, he is now using the special shoe with the leg brace on it, and he walked, with assistance, 26 feet yesterday! With assistance, he can also now wheel himself into the bathroom and brush his teeth at the sink and use the regular toilet instead of the bedside commode. Probably most importantly, Craig is now thrilled to be able to read. He seems to be a bit slower at it than before, but he is now steadily making his way through a novel that we had started reading to him. The therapist estimates that Craig will be in therapy for approximately 3 more weeks. On the challenging side, 6 weeks after the last chemo session, and without me supporting his blood counts with nutrition and supplements, his counts are quite low. I'm working with the dietician at the rehab center closely, and Dave Farnsworth is bringing in lunches with higher nutritional content, so we hope that will help. However, Craig is experiencing some shortness of breath and a lot of fatigue from low red cell/hemoglobin, etc. counts. The doctor there is monitoring the situation closely to see if a blood transfusion to boost up the counts will be wise this weekend or next week. One of the unfortunate side effects of the fatigue from low blood counts combined with intense therapy, and likely linked with occasional stress from worrying about what is happening outside of the hospital, is that Craig is experiencing occasional "episodes". I call them that, because no one is completely sure yet what is happening. His speech slurs, sometimes the right side of his face droops, he gets light headed/disoriented, and his vision blurs. It has happened three times and lasts just a few minutes. I've been working with the doctors this week to understand what is happening. It seems likely that these are seizures, although they look like mini-strokes when he has them (the nurses assure me that they are not), and may simply be signs of fatique. His seizure specialist thinks that what Craig's seizures look like may have changed since tissue that affects seizures was removed along with the tumor. Part of what is difficult for me is that all three episodes have happened when I've been there. Craig was doing well enough this past week that he wanted me to be sharing how I was doing and what was happening with finances, etc. and not just putting on a happy face when visiting. But, I think we now need to revisit this - because I think that's just adding stress when he has enough already to manage! He says he gets stressed when he doesn't know what is happening though... So, who knows?! The episodes also seem to happen when he has multiple visitors and/or is trying to eat at the same time as visitors are present, but it's not consistent. Or they happen when he is just plain exhausted (sometimes he wants to sit in the wheelchair with visitors instead of laying down and pushes himself too hard]. For months seizures have been an issue when Craig gets too tired/stressed, so the pattern does seem familiar. So...we'll see what works out. My father, stepmother, daughter Jennifer, and son-in-law Frank have been working hard with me on getting our home in good order and maintenance caught up, finances understood and money budgeted, car in good shape, etc. The brakes on the car started acting up this week, so son-in-law Hooman will fix them today. He, Michelle, and Karida arrive today for the weekend. The rest of the family visitors leave tomorrow (Sunday). So, we are all tired, but things are falling into place. The staff at Craig's company have been great on helping me understand Craig's benefits and doing what is needed to ensure they keep supporting him. We appreciate their caring. Love, Susanne Recent Photos: Grandson: www.claricomm.com/Aidan_Aug_Sept_2008.pdf Craig Hospital: www.claricomm.com/Craig_Hospital_August_Sept_2008.pdf Family Gatherings: www.claricomm.com/Family_Gatherings_September_2008.pdf

Craig - Major Progress - Update 9-8-08

2008-09-08T05:21:00.000-07:00

After 3 days of intense physical, occupational, and speech therapy, following by three alternative treatments on the weekend, I'm delighted to report that Craig's right leg is now significantly moving! He was also able to support his weight on it long enough to stand on the weigh scale on Sunday (which showed he has gone from 184 back up to 191 since arriving...the goal is at least 200). The right fingers are also beginning to move, and there is more circulation happening in the arm. He is getting around reasonably well in the wheelchair and sitting up in it more and more each day. He got in two trips outside to the garden as well on the weekend. So, he's well positioned to go forward into an intense week of therapy and re-evaluation on Friday. Mentally/emotionally Craig is back in the mode of "I want to live a long life" and "I don't want to live it in a hospital bed"! So, he's very motivated to go forward. He's talking well and making more and more reconnections with numbers and concepts each day. Generally he's recognizing all visitors and delighted to see people. Craig hopes to feel comfortable enough with the telephone to tell us the number and turn his phone on sometime this week. He has now called me three times, so his comfort level is increasing. Susanne

Craig Doing Well in Rehab - 9-3-08

2008-09-04T04:27:00.000-07:00

Here's the update I just did for family (sorry...not enough mental energy to do different updates for different audiences!: Yesterday my father and stepmother came into town from Alberta, Canada, for two weeks. They visited Craig, and Sharlene did some kind of Chinese massage on Craig's leg and arm that seemed to be beneficial. Good followup from the work daughter Leah and sister Nancy did on him on the weekend. Dad and Sharlene are already hard at work on everything that needs doing at the house. Sharlene is cleaning top to bottom and outside, and Dad is reorganizing the whole garage. Dave Farnsworth, Craig's son, came over for awhile today and provided needed assistance, too. As of late yesterday afternoon, I got Craig re-located to University Hospital's rehab center called Hannah House (http://www.uhhospitals.org/case/OurServices/CentersandPrograms/GM/AddictionRecoveryServices/tabid/1200/Default.aspx), which is attached to UH, but the entrance is over on Adelbert (parking in the Rainbow Children's parking garage probably best; there is also a $5 lot next to the building, but if there are no parking spots, you still have to pay that much to get out). If you see a receptionist in any building, you can ask for a blue discount parking card...sometimes it works. Craig's on the 4th floor, room 423. The last few days he has been low on appetite, depressed, etc., so I've already seen a dramatic turnaround in 24 hours. Assessment and therapy began today, and the arm has stretched out once according to an aide who observed it. He's more confident, goal oriented, actively moving, etc. The staff is excellent - very encouraging and committed to his success. We appreciate all the healing energy flowing his way! NOTE: Visiting hours are very different while Craig is in active rehab, because there is no visiting during therapy sessions. Visiting during lunch at 12:15 is okay, although he needs to rest awhile after eating. Dinner is at 5:15, and from then until about 8:30 p.m. is okay...but watch for flagging energy at the end of the day. Feel free to offer to read to him (we are reading The Map Thief; there are also other books in his bedside drawer). Weekends have no structured therapy sessions, so hours are open. It will be a good time to get him out and about the building and the grounds in a wheelchair. There is a garden across from the building. There are various activities available...this will be our first weekend, so we'll just feel our way through. Someone suggested the game of Uno as a possibility to help Craig with numbers...if you have it, bring it along. Cognitively, each day has seen improvement. Craig is conversing much better, reading a little bit, and making more connections. He is recognizing and remembering visitors, although a bit challenged at times still with names. I and his friend Nik have read to him from a novel the last few days, and he is easily following and remembering the story line. He gave an excellent summary of the story so far to his friend Rick tonight. Craig is still being challenged with numbers (couldn't do our house number yesterday) and some troubles with sequencing as well as words for some objects. For instance, the intake nurse yesterday asked him to describe the steps in making tea, something he has done hundreds of times for me in our marriage. He couldn't think of the names for "mug" or "box of tea", but he knew the tea bag came from the word he couldn't remember. He remembered to add honey or agave to the mug. He struggled with remembering to add water, but when he struggled, he indicated that the next thing to add was "tender, loving care"! And, he knew to stir it up, too! So, we got a good chuckle out of the endeavor. Craig didn't act nearly so fatigued today, fed himself all meals with his left hand with almost no help, cleaned his plate, and was much more active. They dressed him in regular clothes, and he no longer has a catheter. They checked him for swallowing problems today and deemed him recovered and back on a regular diet (he's been on soft food with less choking hazard). That made him delighted! I met with the dietician for an hour today after Craig's lunch at her request, filling her in on the last year and his pattern of weight gains and losses. He arrived in rehab at 184 pounds, down from 205 a few weeks ago. He was 230 before surgery last summer. So, he needs more weight to be able to respond well to therapy and any future challenges. He will be quite cooperative with milkshakes or any other items they dream up for him to have! In spite of the weight loss, he is getting compliments on his newly shaved head/hair do (Nik did the hair removal honors on Saturday). Three weeks with no hair washing made shaving a great idea! And, now he matches his son David! On the homefront, I'm doing my best to figure out the finances. Last year and this one right before tumor removal, Craig's financial judgment turned out to be a bit off. So, I'm scrambling to respond to automatic bill payments twice as large as the money in the account! Wish me luck tomorrow as I ask the credit card company to give some of it back! And thanks for family who helped with the rescue. PLEASE DO NOT MENTION THE FINANCIAL STUFF TO CRAIG IF YOU SEE HIM...he doesn't need the worry. However, I did tell him that it wasn't fair for him to choose a skill testing question for accessing one of the accounts that asked me what his high school mascot was! Not something I could easily figure out! Especially since he was in two different high schools... I'm also compiling information on treatment options and working with the doctors to clarify what they are and the benefits and side effects so we can be in decision-making mode towards the end of the month when they'll do another MRI scan. We also have a second opinion set up next week with the Cleveland Clinic, although I don't know yet whether Craig can go or how that will work. With Craig on restricted visiting hours, I hope to be able to normalize life here a bit more...probably just getting down to the hospital once a day instead of the 6, 8, 10, 12, 24 hours I've been doing. Having visitors keeps Craig uplifted and encouraged, so we appreciate all those who have been able to brave the horrid construction and traffic and come down - Euclid Avenue is such a mess (if you know a back way - take it). He is looking forward to being able to handle the phone again soon so he can talk to others, too. The last two weeks have seen many losses and disruptions for Craig (and me) - the ability to think and read, write, work, walk, go to the bathroom easily, move, and more. We finally decided to sell his truck as well. And, his spirit keeps shining through. He's decided there is more left for him to do in this world, and he's working hard in rehab to regain as much functionality as he can. With love, Susanne

Update on Craig and Susanne 8-30-08

2008-08-30T10:05:00.000-07:00

I just did the update below for family and thought you'd want to see it too. I appreciate your companionship through this. Love, Susanne Whew, what a couple of weeks this has been. I just fell apart this morning (couldn't stop crying!) from exhaustion and stress and am now rebalancing. Our friend Nik is at the hospital with Craig at the moment covering for me, and Craig is in the process of moving from intensive care to a regular bed on Lerner Tower 4th floor, neurological ward this afternoon. His daughter Michelle left yesterday, but his son David is back from vacation and daughter Leah due in shortly from DC for the weekend. Throughout this year, the kids have tended to connect with their Dad as he's healing and not during the crisis period, so it was such a relief and blessing having Michelle with me through the emergency room and intensive care experience this week and to have her help at home. Nik accompanied us through both hospital experiences as well. Michelle hadn't seen me in action as a patient advocate before so it was a learning experience! They made the mistake of putting us in an ER room with a telephone (cellphones don't work there), so when a doctor from the neuro team hadn't showed up in 3 hours, I called the oncologist and had him get in action. Someone showed up in about 15 minutes! Michelle also got to experience how challenging it is being in a room with a patient and having alarms go off regularly (we took turns being in the room with Craig that first night). We discovered recently that our trusts and wills, etc. were not completed competently, so Michelle's background in insurance, banking, etc. was such a help this week. She worked with our new lawyer and is helping us get our documents and records into order. It was stressful doing the hospital stuff and all that at the same time, but a relief for her father and I to have someone we trust knowledgeable and handling what needed to be done. Thursday evening turned into an impromptu anniversary party for us with a few friends and cookies. Dick Yates sang happy anniversary to us, and we ended the day with just the two of us reading a very moving tribute from a couple about our marriage and our work to benefit other couples. During the evening, Holly Timberlake, a long-time close friend and counselor walked Craig through some visualization and healing exercises which helped Craig connect with joy as well as continue the process he's in of accepting that the journey he's on is one that may take him into the next world. A number of people close to us are walking with us as we experience the limitations of the medical personnel to create miracles. Yesterday was difficult in some ways. Craig seemed a bit depressed and I was exhausted and we both struggled with seeing the outcomes of various assessments of his abilities. Physical therapy, occupational therapy, and speech therapy all were in. The right leg is still minimally responsive and the right arm not at all. They are saying that Craig is experiencing both aphasia and paraphasia. I've been looking those terms up this morning. Aphasia is a loss of the ability to produce and/or comprehend language or the interpretation of language. It is not a result of deficits in sensory, intellect, or psychiatric functioning, nor due to muscle weakness or a cognitive disorder. Depending on the area and extent of the damage, someone suffering from aphasia may be able to speak but not write, or vice versa, or display any of a wide variety of other deficiencies in language comprehension and production, such as being able to sing but not speak. When they tested him, Craig had some difficulty with reading, following directions, etc. He has struggled since this last surgery with time and number difficulties - unable to tell us what year or month it is, unable to count, etc. Yesterday he was back able to count to ten and list the days of the week, so that was improvement. Paraphasia is when one loses the ability of speaking correctly, substitutes one word for another, and changes words and sentences in an inappropriate way. The patient's speech is fluent but is error-prone, e.g. 'treen' instead of 'train'. For instance, Craig has grouped in his head "wife, sister, mother" and sometimes introduces me as his sister. He is frustrated with difficulties in expressing himself at times and expressed concerns about "losing his marbles." We tried our best to reassure him, but he's very unhappy at the limitation. Sylvia and Dave from Craig's office stopped in and he recognized them and was able to converse with them and his cousin Ann and partner Pat stopped in for a visit. He was able to talk to them relatively well and when we talked at the end of the day, he listed the visitors as the happy moments of the day. We met with the surgeon late yesterday afternoon. He said that the team is baffled at Craig's range of symptoms. The right leg problem is not unexpected, but the rest is. Aphasia is common after a stroke, but there is no medical evidence on any of the tests that he had one. It is possible that the seizures two weeks in a row are the culprit, but no one is certain. Craig got a chuckle out of stumping the experts. Craig now has a line in his arm so that he can receive antibiotics for the next 8 weeks. We have decided he should stay at University Hospital for rehab and not go to a facility near our home again. I toured the facility in the afternoon, and UH - Hannah House has a rehab floor that includes skilled nursing, and we hope that's where he will go next week. Then he's close to his doctors and the hospital if there are future events. The rehab hospital last Monday did not respond appropriately or fast enough when he got in trouble. So, this latest crisis is passing, but there is still a long road ahead of us. One day at a time. As Craig stabilizes, updates will slow down. I've done my best to keep everyone informed, but the kids keep reminding me that Craig is my first priority and I can't take on being responsible for everyone's anxiety when they don't hear from me. I have noticed though that it helped me to do the updates. I makes me feel connected to all of you and not so alone. Last night I was just too tired, though. We appreciate all the love, support, and prayers. For those of you who can, visitors or calls to Craig are welcome. I won't know room or phone number until later today, but you can always call the main hospital number, 216-844-1000. Mom F and Mom M - Sending flowers now that he is out of ICU is good (University Hospital, 11100 Euclid Avenue, Cleveland OH 44106). Everyone else, please don't...it's too much. Sending flowers to me works, too. Yellow ones and multicolored mixes make me happy (25241 Chatworth Drive, Euclid, OH 44117). I know plants last longer, but then I have to take care of them. Thanks for your understanding. Love, Susanne

Surgery and Intensive Care 8-27 and 8-28

2008-08-29T04:23:00.000-07:00

The surgery for head infection went well. There was a tremendous amount of pus (sorry for the image folks!), but it appears that it was all between the skull and scalp and did not penetrate the brain. Because the bacteria may have been prone to grow in the section of the skull that was removed and replaced during the tumor removal surgeries, they have removed it permanently and inserted a titanium plate in its place. We are still awaiting final "bug" culture results, but it appears likely that this is some type of staph infection. Craig's daugher Michelle and I spent the night in intensive care with Craig.

Craig is still experiencing fever and needed closer monitoring today, so he was left in intensive care. We encouraged a small number of people to visit him briefly today, and that seems to have lifted his spirits. He experienced some challenges swallowing pills during the night, so they would not allow him to eat today (no food since dinner on Tuesday!) until his swallowing was assessed. He was finally approved to eat a slightly modified diet at about 4 p.m. (first meal in 3 days!) Yay!

8-28 was a second day in intensive care. His speech is still being affected by the drugs, but improving. He'll be on high doses of antibiotics for quite awhile. Still some fever.

8-28 is our 9th wedding anniversary. We began the day with saying a prayer for marriage and before I left for a break, I was helping him go to the bathroom. So, from the sublime to the mundane! But alive and together. The day ended with more friends and a mini/impromptu anniversary party complete with chocolate chip cookies and Craig feeling much better. Love, Susanne p.s. Sorry for the delay in news - a little busy and blogger locked out access for a few days.

Emergency 8-25-08

2008-08-29T04:20:00.000-07:00

Craig was released to rehab hospital on Saturday. He was readmitted to University Hospital 8-25-08. Head infection, fever, seizures, likely more surgery needed. Very drugged up. We are struggling, but doing our best. Found a couple of things to laugh about today, but a horrid day of tests and procedures. Know you are with us in thoughts and prayers.

Love,

Susanne

Craig in Rehab; Update 8-24-08

2008-08-24T07:10:00.000-07:00

Friends: My husband Craig was transferred from University Hospital to Euclid Hospital Rehabilitation center (attached to Euclid Hospital) Saturday, August 23 (http://www.euclidhospital.org/AboutUs/Map/tabid/1035/Default.aspx). 18901 Lakeshore Blvd, Euclid, OH 44119 Craig is struggling some with fatigue and the side effects of the medicines (a little groggy, slight memory impairment), but overall he is in good spirits. He can now move his right thumb, so between that, increased dexterity of his left arm and hand, and using his mouth as a "third hand", he's managing to feed himself for the most part, shave himself with help, etc. The leg is also moving slightly. But, rehab will be an intense process for the next few weeks, both inpatient and then outpatient. Verbally and cognitively he is mostly fine, for which we are very thankful. Timing for calls and visits: During the day, Craig will be doing rehab, resting, and meals. It is best to reach him or visit 5:30 p.m. to 8:30 p.m. in the evenings or various times on the weekend (I don't know his therapy schedule for next weekend yet, but it is lighter than during the week). If you are uncertain about timing, then call him or me (216-383-9930). Calling: The number at Craig's bedside is 216-692-8752. He does not have the ability to put it on "do not disturb" and there is no way to leave messages. Right now if you talk to him he sounds very tired due to some lingering shortness of breath from the surgery. But generally he will welcome hearing from people. Simply ask him whether it's a good time to talk. Visiting: Craig is in room 28 on the second floor of the rehab center. He will be helped and encouraged by visits from people and encouragement with regaining functionality. Feel free to bring him snacks or whatever will cheer him up. He has plenty of more serious reading material and is propping books on the bed table and turning pages left handed. Craig very much believes this guidance from the Baha'i teachings: "We should all visit the sick. When they are in sorrow and suffering, it is a real help and benefit to have a friend come. Happiness is a great healer to those who are ill. In the East it is the custom to call upon the patient often and meet him individually. The people in the East show the utmost kindness and compassion to the sick and suffering. This has greater effect than the remedy itself. You must always have this thought of love and affection when you visit the ailing and afflicted." 'Abdu'l-Baha We are hopeful that he will soon be able to be moved from his bed into a wheelchair. Visitors can then wheel him to the living room, to the view of Lake Erie, out to the healing garden, etc. So, feel free to ask him and staff if you can do this. Please make sure he has a full water bottle first. Seeing Craig over these weeks in the rehab hospital and talking to him will be good for him and for those of you who wish to see him. In October/November as perhaps the tumor grows back and perhaps treatment options are resumed, it may become more difficult. So, I encourage those of you who can to see him and be in touch. There is no estimate yet for how long he will be there, but certainly 2-3 weeks seems likely. Love, Susanne Susanne M. Alexander

Craig Out of Intensive Care

2008-08-21T17:59:00.000-07:00

Craig is out of intensive care and in a regular room. He'll probably be discharged to a rehab center in the next 48 hours. Anyone who wants to send a card should send it to the house and I'll deliver it: Craig Farnsworth, 25241 Chatworth Drive, Euclid, OH 44117. Rehab will be vital - he is still only slightly moving his right leg, which the surgeon says is connected to the tumor removal. His right arm is responsive to pinching (no, I didn't do it, but they did!), which is a good sign, but it's not moving at all. This is apparently due to the seizures experienced during surgery damaging the nerves. Cognitively he was more alert today, smiling more, interacting more with staff, etc. Hopefully he'll sleep better out of ICU. We found out today that they only got 90% of the tumor out (it's definitely still cancerous) and the remainder is wrapped around critical blood vessels. Removal would have likely caused a stroke. This also limits treatment options, but doesn't eliminate all of them. We've been given a list of conventional and experimental choices, and Craig has a month of recovery or so for us to consider what to do next, get second opinions, etc. Without treatment (one of the options listed), it will likely grow back within a few months. So, your prayers for us to be guided through this process are appreciated. Love, Susanne

2008-08-20T17:24:00.000-07:00

Craig had a calm day in ICU, where he will likely stay at least until tomorrow. There have been no seizures since the surgery ended, thank God! So, they disconnected the EEG brain monitoring device and removed all the wires from his head. They also removed the oxygen tube from his nose and the drainage tube from his head, so he's much more comfortable. Just IV's now in his arms. I saw the incision today. Still the perfectly carved "C" on his head plus a row of staples on an extra incision to relieve pressure on the skin. I sat with him from 10 a.m. to 6 p.m. or so, and he napped off and on and chatted, so he was coherent and relatively alert. The drugs are making him a bit dopey, and the constant interruptions from the staff made it difficult to do his usual serious napping. He's struggling being one-handed and left handed, so I fed him lunch and dinner. He ate every bite. I was able to work with the nurses for them to find a phone Craig could use to call his son David to wish him a happy 30th birthday, but there's no way for others to call him until he's moved out of ICU. He tried to read, but concentration was difficult, and holding the book and turning pages one-handed was too tough to manage today.

The best news of the day is that Craig has full sensory feeling down his right side...if you touch his skin, he can feel it everywhere. The signals from his brain to his arm and leg are generally not happening smoothly (he tries to move things and nothing happens), but he moved his shoulder once, his arm/hand once, and after I massaged his leg and foot, he was able to wiggle his toes a few times. So, definite signs of life. Yay!

I swam this morning at the Y and got some editing and reading done while Craig napped (our book Pure Gold is due in edited version to a Korean publisher in September, so editing it is my hospital sitting around project!). I left after dinner so I could come home to rest. We'll now see what tomorrow brings... Susanne

update on craig

2008-08-19T18:20:00.000-07:00

I'm in barely functional mode, so no comments allowed on any grammatically type etc. errors :-). I arrived at the hospital this morning at 5:50 a.m. for morning prayers with Craig, and we headed to the pre-op area at 6 a.m. Craig went into surgery at 7:20 and out about 2 p.m. They finally let me see him in recovery at 4:30. Don't know why you would care about this travelogue, but there it is. A little linear thinking.... So, here's the summary of how it went and how he's doing: - Tumor completely removed - Tumor was tested and is glioblastoma (brain cancer), so good thing surgery was done...it wasn't just cells hit by radiation or something less serious - Bloodd vessels near tumor kept intact - Great care was taken to not impact more motor functions; unfortunately there were a number of seizures during the motor mapping and surgery and at the moment there is limited/no movement on the right side of his body from the shoulder down (face okay). However, the doctors are indicating much of the problem could be swelling and brain trauma from surgery at this point, so it's way too early to know how much functionality will return. Same thing with any discussion of further treatment options. - He was far more alert and responsive from 4:00 on than anyone expected. He asked how my day had gone with the friend who was with me during the day, asked intelligent questions about the surgery, responded to prayer, interacted with the doctors relatively well considering how doped up he was, wanted to know what he looked like! (i couldn't find a mirror), etc. - He is in NICU - Neurological Intensive Care Unit for 24-48 hours or so with brain seizure monitoring, etc. going full time that's as good as it gets... Love, susanne

Tumor Back - Surgery to Remove 8-18

2008-08-18T04:25:00.000-07:00

Friends: Craig's tumor has recurred, in almost the exact same place as a year ago. He is in good spirits and the doctors are very optimistic. Surgery is scheduled for the afternoon of 8-18 (today) to remove it. Love, Susanne

Week of Chemo #6 Accomplished!: August 4 to 10

2008-08-10T14:26:00.000-07:00

The side-effect symptoms associated with the Temodar, that I mentioned in the previous post, became somewhat more pronounced while taking the drug this week. I was significantly weaker than I have been, along with some difficulty walking. I didn’t go to the office Thursday and Friday due to the weakness, fatigue, and constipation, but I did work a couple hours from home each day.

A couple of times I experienced pre-seizure-type activity. My chest would begin to quiver but I was able to control it with relaxation and touch as I described during the hospital stay for seizure activity in February. So, I didn’t need to take extra medication, which was good.

Susanne did fix a couple of new food items this week sweetened with agave (sweetener from a cactus plant) to appeal to my sweet-tooth without adding sugar into the diet. One was strawberry sorbet and the other was banana-date nut bread.

On Tuesday, we had a new garage door installed to replace the one from 1956 that came with the house and no longer worked.

On Friday, 8-8-08, We thoroughly enjoyed watching the Olympics opening ceremonies….awesome and very dignified. The opening drumming was particularly moving. Those of you who know what our TV is like and that we never watch TV will be amazed that we actually sat and enjoyed the fuzzy performance!

On Saturday, I had a mini-reunion with guys that I was in an Astronomy Club with during high school (during the 1960’s). Turns out that two of them, who are still involved with the club, one currently acting as president, had been recently wondering whatever happened to me. A few days later, I found one of them on FaceBook. He was pretty surprised! Back in the 60’s (the club started in 1963) we were just a bunch of high school guys with telescopes. They have since purchased land and built an observatory, which I’m looking forward to seeing. We were supposed to be stargazing together last night, but rain dampened the event. I was having difficulty walking, but the park had a wheelchair, so Susanne pushed me around. We saw a makeshift indoor planetarium show, visited with the guys a bit, and headed home.

Too Skinny to be Pregnant: July 28 to August 3

2008-08-03T16:57:00.001-07:00

We saw the oncologist this week. Earlier in the week, his nurse had called to share a laugh. Someone had inappropriately canceled my next MRI appointment and had put in the notes that the reason for cancellation was patient pregnancy. Now that would make medical history! But, I think my weight is headed the wrong direction to be pregnant. For some unexplainable reason, I’ve lost another 10 pounds over the last month. I’m down to 195 pounds! It’s hard to understand, because I’ve maintained a good appetite, am eating well, and no nausea. Susanne is researching how to bake stuff using Agave to add some extra calories to my diet. Should be tasty!

Dr. Nock, the oncologist, approved moving forward with the next round of chemotherapy, which will start August 4. My blood counts had improved across the board, even achieving normal on the white blood count. The only low one was platelets, but they were just good enough to do chemo. This will be my 6th of 6 prescribed rounds, but since there was a gap between the January and April rounds due to infection surgery, the doctor is leaning towards adding a seventh round so that there are 6 in a row. Following my next MRI, August 18, we will decide if I need to do 1 more round the week of September 1. Obviously, if it has any potential to affect my long-term survival, I’ll do the extra round…but I’d sure like to be finished with treatment.

We did a detailed review of the known side effects of the chemotherapy drug (Temodar) and found that a significant number of them I am now experiencing to some extent:

- Joint and muscle pain

- Weakness

- Reduced coordination (both walking and writing)

- Constipation

- Some speech impairment

- Fatigue

- Abnormal gait

- Reduced concentration

In the Tuesday Gathering Place support group people often speak of “Chemo-brain”…I think I am now experiencing that, too, unfortunately. I’m still doing well managing our finances, but a couple of payments this month went to the wrong places. I struggle when I have to cope with too many details at once. Things that used to be simple for me to grasp are sometimes overwhelming. Some of the fuzzy thinking might be due to the steroids as well—it’s hard to tell for sure. But that’s just how it is for right now. (And, it’s a good thing Susanne edits my posts before you see them!)

I’m ramping down on the steroids now. At the beginning, they seemed to help reduce the numbness in my foot and leg and help me walk better. I actually experienced some pain and discomfort instead of numbness for a few days. They don’t seem to be helping me now, though, and slightly elevated blood pressure and blood sugar are indicators that there may be too many side effects from them going on. So, time to stop. The good news is that I have had no seizure activity since July 17.

On the complimentary medicine side, I had a deep-tissue massage and then soak in a hot bath with Dead Sea Salts. Felt really good.

My son, David, and grandson, Aidan, picked me up at the office for lunch on Friday. It was fun to introduce them to some of my colleagues, have lunch, and then go back home. Aidan had his first time by himself with Susanne (Nana) in the play room while Dave and I ran an errand. With all that has occurred since Aidan’s birth in March 2007, we haven’t babysat for him as we normally would. We hope to do it more now.

We scheduled a hot air balloon ride for Saturday, August 2…intended to be our first and the fulfillment of a long-time dream for both Susanne and me. Unfortunately, it was too windy. We will now pray that my health and the weather don’t interfere with our new date in September.

We had a delightful lunch get-together with my cousin Bill Farnsworth, his wife Karen, and son Chuck along with my Aunt Jean. Bill and family were in town, from Boston, to visit his mother, who is in a nursing home in Oberlin. (We forgot to take photos, though!)

Reflections on the First Anniversary of Diagnosis/Surgery: July 20 to 27

2008-07-27T10:58:00.000-07:00

It’s now, amazingly, been one year since my tumor-removal surgery, so I’m reflecting on this period of time.

When I began the blog, I described what I was experiencing as an “amazing spiritual journey” that I’d “come to call the Fact-Based Spirit-Guided Path.”

Does this still feel as true now as it did a year ago? YES. My understandings around the Fact-Based Spirit-Guided Path have grown, developed, and been modified to a certain extent. But, my core feeling is that July 19, 2007 at about 2:00 p.m., when I got the diagnosis, is a moment in time that I will forever recognize as a spiritual transformation of my very being.
How has my thinking about this Path been modified? A key piece of the modification has been in realizing how difficult it is for many to grasp and apply the “Fact-Based” portion of the Path. Maybe it’s the scientist/engineer in me that allowed me to immediately grasp the importance of focusing on the fact of the diagnosis without descending into severe anxiety. My college degree is Physics and my work career of the last 25 years has been in R&D, Product Management, and technical sales, so I’m pretty darned good at sorting out the essential information. However, I have also struggled at times with anxiety when the facts have been unclear due to limitations in medical equipment or misinformation.
How did the Spiritual Journey unfold from July 19? The first was my being Spirit-Guided to calmly prepare for the hospital stay and leave home with the picture of my wife and grandkids and the “Three Tools of Healing” poster. It felt Spirit-Guided to me to make lots of personal connections with friends and family prior to surgery and then to recover from the tumor removal with a high level of tranquility, yet fully determined to walk normally again. It was almost 4 weeks after the surgery that we got the official pathology report. By that time, I was fully ramped down from the high level of steroids that they put me on pre-surgery to reduce brain swelling and was able to continue on the Path. My conviction of being a participant vs a passenger in the surgery and treatment have strengthened throughout the process.
What was next and how did I apply the Path? The researching phase was next, which began with a message out to friends and family seeking well-researched conventional medicine treatments and well-researched alternative or complimentary medicine and healing methods. I wanted the means of maintaining personal wellbeing and the strength of the body’s immune system while undergoing the conventional medicine option. I was clear that I wanted to avoid receiving alternative approaches that were only anecdotally-supported (for example, this worked for someone…). These, to me, bordered on pseudo-science (no research demonstrating effectiveness).This was a very powerful distinction to have articulated and I have continued to find it useful.

As part of the researching, we traveled to the Block Integrative Cancer Care Center in Chicago in September 2007 and came home loaded with both medical and complimentary information and recommendations. Susanne and I consulted to determine what our plan would actually be, and I felt Spirit-Guided in selecting what recommendations to use or not.

Where did I go from there? In large part motivated by the book “Love, Medicine, and Miracles”, I gained further affirmation of the power of visualization work and the importance of being an active participant in the treatment process. I created specific plans around each of the 3 phases of treatment: 1) Six weeks of radiation/chemotherapy, 2) A six-week rest break, and 3) Long-term chemotherapy. For each of these phases, I worked with a hypnotherapist, who created sessions that I tape recorded and listen to frequently, and which reinforce the current plan.

Do I still have thoughts/plans of setting up a means of teaching people about how to apply this Path in their lives? I do. I initially thought it would be quite easy to accomplish but, now I know it’s going to take a fair amount of work to structure the program, and I may need a collaborator. I’ve put this on hold to focus finishing my treatment and getting on with life.

So the journey continues!!!

During this week, there were several wonderful opportunities to share my journey:

1. Deb Wood, the reporter for the U.S. Bahá’í Website that did an article on my journey in November, interviewed me again and posted an update.

2. Susanne and I were interviewed by Ted Henry, a local TV news anchor, for a 2.5-minute segment about spirituality and cancer. It will air on the Friday 6 p.m. news sometime soon.

3. We had dinner with a couple who shared with us their 5-year journey responding to a glioblastoma tumor the husband experienced.

4. My long-time friend Chris Ruhe came to town with his voice and guitar, along with John and Joe Rafalak as drummer and saxophonist, and did a house concert at our place on Friday, July 25. Long-time friend Dan Twaddell, a jazz musician living and studying in Columbus, also came and played saxaphone and flute. It was great to have our home filled with friends, music, and good food!

Annnnnnd, there were no medical incidents or seizure activity for the entire week!!!! YEAH! My eldest daughter, Michelle, and her husband, Hooman, also celebrated their 10^th wedding anniversary!

Peaceful Week: July 13 to July 19

2008-07-20T17:19:00.000-07:00

Medically it was relatively peaceful week. - I started the week with a Holistic Healing/Acupuncture session, which was an excellent way to rebalance after the chemotherapy drugs and seizures from the previous week. - I only had one mild seizure episode and that was at the end of a day where I had probably pushed a little too hard at work. The management of my company asked me to give a presentation twice during the day to all the employees about the Market Development work I am doing. Part of the reason for this was that they wanted the rest of the employees to see that I was back and actively involved. I was very pleased to do the presentations, as I enjoy that, but it was draining. I skipped Toastmasters that night and stayed home to rest and worked from home the next day. The Tuesday night support group at the Gathering Place was pretty intense. Because a couple of the participants were being confronted with it, there was extensive discussion about quality of life versus continuing to take treatments that were not working and causing pain and other side effects. It became clear to me that many of the males, and the group is running about 50% or more male, are unfamiliar with doing anything besides what the doctors prescribe and toughing it out otherwise. Most of the females clearly have other resources upon which they are drawing. I reached out by telephone to one of the guys who was in particular distress. I shared, more fully than I had so far, about the aspects of the complementary treatment approaches I’ve been using and followed up with this email message to everyone in the group: “I got a sense last night that providing you with some of the details around the complementary treatments I am doing might be of interest: - As soon as I got the diagnosis that the removed tumor (all visible in one piece YEAH) was a Glioblastoma Grade IV we launched into research mode. - I quickly became aware of the Block Integrative Cancer Care center Block Integrative Cancer Care Center in Chicago. We contacted them for the first available appointment. - I went there with 2 objectives: Second opinion on what my local docs were recommending (they concurred) Recommendations on complementary aspects (we got a whole lot of stuff) - They also prescribed a range of vitamins and supplements. - I have found it useful to have the dosages and usefulness or not-usefulness evaluated periodically by a holistic healer that uses a muscle testing technique to evaluate both the individual and entire complement of drugs and supplements. I do NOT modify the prescription drug dosages based on this but do adjust the vitamins and supplements. This is the current regimen. - I had immediately shifted into strong prayer, meditation, and visualization prior to the surgery and honestly felt as a participant in the surgery. I kept it going and found the book Love, Medicine and Miracles by Bernie Seigel to be very informative. I would be more than happy to talk about this with anyone that feels the need for more. Blessings on all your journeys. See you next week. Craig” With being more public about the holistic healing/acupuncture stuff I’m doing I got to thinking a fair amount about why I see validity in this. What I’ve come to as a response to the question “How can you believe this stuff” is: 1. I have a degree in Physics and work experience in engineering. 2. The engineer in me obviously wants to measure, touch, feel, etc. the truth. 3. The physicist in me recognizes that, as we explore deeper and deeper into the sub-atomic realm, things shift from being material to energy as the basic building blocks of what we experience, at the macro-level as material. 4. If we build an understanding of the human body back up from there, the material aspects that western medical science measures and analyzes emerges but so does space for energy-based aspects that western medical science does not have the tools, yet, to measure….many eastern medical practices have been tapping into this for centuries. 5. The medical doctors keep commenting on how strong and healthy I am, and we clearly see the response in my health and bloodwork from the nutritional intake and supplements I’m doing. We also had a delightful visit with Susanne’s brother and his wife, who drove down from Toronto. Friends Stephanie and Steve came for lunch on Saturday and brought a picnic lunch, so that was fun, too.

Titanium Antenna!!: July 5 to July 12

2008-07-13T15:15:00.000-07:00

The annoying hard bump on my scalp, that we’ve been reporting to the Neurosurgeon since the January wound infection surgery, finally got diagnosed. I’d been telling him that it felt like there was a pebble underneath my scalp. Early this week, it broke through the scalp and was clearly a piece of metal. He took one look at it and immediately knew what it was.

When I had the initial surgery in July 2007 they, obviously, had to cut a piece of the skull bone out so that they could remove the tumor. To reattach the skull bone piece to the rest of the skull, they use tabs and small screws that are made of the metal Titanium, because it is invisible on MRI scans.

Apparently when they did the surgery in January, they were probing around under the scalp to remove infection and apparently the probe got caught on the end of one of the tabs and bent it upwards. What I have now is a 1/4” high piece of Titanium protruding from my scalp. So, Susanne and I have been joking about it being an antenna and wondering what signals I’ll pick up. Not only that, this antenna is attached to what I’ve come to think of as the trapdoor for my 7th or head Chakra. How cool is that!

However, the downside is that at some point it will need to be surgically corrected. The surgeon said it may wait until surgery is required for some other reason or, once I’m through with chemo and my blood counts have recovered, I’ll have a further operation to fix the problem. It’s actually kind of annoying when I’m washing or combing my hair, and my rings easily catch on it. The surgeon said he’s never had this problem occur before, and was somewhat embarrassed and apologetic. I like being unique, but maybe not when it causes further surgery?! We also saw the radiology-oncologist the same day, who simply reported that he’s not seeing anything going on to be concerned about at the moment.

During or just after Round 5 of the chemo (July 7 to 11) I had two mild-seizure events. Each time, I took a single dose of the prescribed Clonazepam and the activity subsided quickly. The one episode was Tuesday, July 8, so I was unable to work much that day. The other was Saturday afternoon July 12, shortly after I’d taken a long hot bath in Dead Sea Salts. Actually, the circumstances of both of these felt to me to be of a releasing nature not of a stress-induced nature. However, each one that happens makes the point to me that driving is postponed, once again. It’s very frustrating! My sister has borrowed my truck for the summer, but I’d love to have it back and be behind the wheel!

In addition to the medical stuff, we:

Had a delightful boat and swimming outing on Lake Erie with our friends Rebecca Li and David Stickler on Sunday, July 6th.
Attended a wonderful but intense session of the Spirituality Group at the Gathering Place. The focus was on using chanting to spiritually focus and lower stress. So far, on weeks when we have met with this monthly group on a Thursday we have skipped our normal support groups on Tuesday. We both felt the need to be there this time…

Major Lesson Learned: June 23 to July 4

2008-07-04T17:02:00.000-07:00

On June 23 and 24, I had 3 episodes of the right-side spasming (mild seizures). The Neurologist prescribed Clonazepam that I am to use on a short-term, as needed basis. I took 3 doses and then stopped. I was too tired to work much on both the 24th and 25th. If I take a dose as I begin to feel an episode coming on, I may only need 1 dose. I have only had 1 instance of that occurring, since, on July 1st.

Because of the roller coaster ride in May, which left some doubt as to whether the tumor might be recurring, I had another MRI scan done on June 26. The oncologist reviewed it with us the same day, because I was to start the next round of chemo the following week. Well, he looked at it and saw what he interpreted as being evidence of tumor re-growth (YUCK). He 1) postponed the next round of chemo as he and the other doctors would need to consider shifting to a more aggressive treatment or a clinical trial, and 2) indicated that a full review of the imaging would be completed by the following Wednesday at the weekly Tumor Board meeting. He promised to call as soon as the meeting was over. This was really pretty depressing to us and to the few people we shared the information with. I was also angry that this was happening, as I have remained convinced that the cancer was all removed last summer. Susanne and I left his office and stopped by the lakeshore to process our emotions and concerns. We decided not to do a broadcast message or blog posting, however, until after the Wednesday meeting so we could share the treatment options along with the expected bad news.

You can imagine the elation (and consternation!) we experienced when the doctor called on Wednesday and told us there had been an error made with the MRI…too much contrast was injected (I think of it as an over-exposed negative) which caused formations that weren’t tumor to look like tumor. It looked much worse than last month’s scan. So, the end result was good news, but it was another emotional roller-coaster ride….yikes!

We have now requested, for subsequent MRIs, that they wait to give us results until all the doctors have reviewed the images and have a consensus agreement. The oncologist agreed that this would be a good procedure to follow for all patients. Given Susanne’s strong interest in identifying an issue and accomplishing systemic change to prevent the issue from reoccurring, she was delighted with his willingness to consider this change.

Due to the brain swelling the doctors keep seeing on my MRI’s and the decrease in right side functioning I’m experiencing, as well as the increased seizure activity, the oncologist has put me back on steroids. While we don’t like some of the side effects, I am already noticing an increase in mobility. And, I do like the side effect of increased energy! I’m also now scheduled to begin round 5 of the chemo on July 7-11.

In the midst of this roller coaster ride, we proceeded with our plans to travel to Dayton for our granddaughter Karida’s 4th Birthday party. We obviously had to share the news with the gathered family but stressed that we would have final word on Wednesday. We put that behind us as best we could and had a wonderful time:

1. Karida spent 1 night and much of the next day with us at our hotel.

2. Finally got a picture of Michelle, Karida, and, Hooman..

3. Also got a picture of my son, David with both Karida and his son Aidan

4. Here’s some other photos of the party.

It just so happened that Michelle was planning to drive to Cleveland anyway on Wednesday to do a car swap with David. She and I had a delightful lunch together and she stayed for the doctor call. The three of us went out for a celebration dinner before she headed home.

On Monday evening, June 30, Susanne and I attended a special presentation at The Gathering Place focused on brain tumors. The presenters were from The Cleveland Clinic. We learned a lot about why it is so complex to treat these tumors. We were also encouraged by meeting someone who is a 5-year survivor of glioblastoma. He and his wife both looked very well!

Still Back on Track: June 1 to 22

2008-06-22T09:30:00.000-07:00

On June 1, we participated in a fundraising walk for The Gathering Place. I began using my cane again that day because of challenges with weakness and numbness in the right hip, leg and foot. These symptoms seemed to have been made worse by the Dilantin (anti-seizure drug) the doctor had put me on May 30th. Friends had to support me on the last of the mile to get me through it. And, my nephew and then a neighbor teen cut my lawn the last two times. I’ve improved quite a bit since that day, but I’m still using my cane on uneven surfaces and for longer walking for some extra support.

I saw the chiropractor on June 3rd to have my atlas bone placement adjusted. It was out of place, and was the last time I had the seizure/spasming as well. Twisting of the dura layer of the brain, which likely occurs when this bone is twisted, may be a contributing factor. So, I’ll plan to see him more regularly. Thankfully, as the brief dose of Dilantin wore off, I did not have any resumption of spasms.

I completed the 4th round of chemotherapy on June 6 without incident and was able to work every day that week, unlike previous rounds where by Thursday or Friday I was too tired to function much at all. I was able to participate in the Thursday Toastmasters meeting where Susanne was a speaker and the Friday meditation session that Susanne led. Previously I would not have been able to do so. Both were wonderful and on the topic of happiness, based on all the reading and working she has been doing on the subject, which is the focus of the new book we just published, Happy at Home, Happy at Work. On Saturday and part of the day Sunday I was very tired from the chemo, but again, it was not as severe.

On the 11th, Susanne and I attended a session at the Cleveland Institute of Music consisting of music and research presented by Dr. Kamal Chemali , a Cleveland Clinic neurologist, on how different types of music improve brain functioning. The acoustics in the new Mixon Hall there were outstanding, and it was helpful to understand how I can use music to assist me in my healing. The Gathering Place spirituality group session this month was on music, too, and we identified a couple of artists to add to our collection.

In spite of the fatigue, I’m happy to report that I hit a new record of working more than 30 hours the week of June 16! Due to the ongoing right leg problems, I have now added 2 supplements to my daily routine after checking on their positive match with my body with one of our alternative practitioners:

1. Melatonin: My son had good results from using this during his brain cancer treatment to lessen chemo side effects, and my sister and another alternative practitioner recommended it as an effective anti-oxidant that can penetrate the blood brain barrier.

2. Boswellia: After a friend suggested I consider taking this supplement, I found some research data indicating a potential for reduction in swelling associated with Glioblastoma. I also found a Phase II Clinical Trial at the Cleveland Clinic designed to confirm this earlier research. My hope is that the Boswellia will reduce the brain swelling which shows on my MRI’s, and that the reduction will lead to improvement in my leg symptoms. Boswellia has been used for centuries to treat joint swelling.

My Spirit-Guided interpretation of the facts of the last month is that the brain rearranging, discussed in the post of May 23 to 30, is settling down, perhaps with the aid of the new supplements. My strength seems to be improving, and the neurological symptoms in my right leg seem to be decreasing. My fatigue level is still relatively high, but I attribute that to the chemotherapy and the high level of anti-seizure medication that the neurologist has me on.

A major triumph during this time period was that I was well enough to travel to North Carolina to present our first marriage enrichment workshop in 14 months! YEAH! We used a wheelchair in the airport to conserve my energy and help with the distances. I wasn’t able to participate for all of the weekend (the hosts had made arrangements for me to have private space to nap when I needed), but I was there for most sessions and led a couple of my favorite ones. It sure felt good to get back into this work with my dear wife, Susanne.

Oh, and the dentist says I have no cavities!

Roller Coaster Smooths Out:: May 31 to June 2

2008-06-02T18:16:00.001-07:00

Since the message of a few days ago was kind of a cliff-hanger I thought an update with the significant events today would be worthwhile.

We saw the neurologist (seizure specialist) on June 2:

He provided a copy of the "official" report of the interpretation of last week's MRI scan. It indicated that the hole, where the tumor was removed last summer, has gone away, there is evidence of some additional swelling but no sign of tumor re growth. YEAH
He ran an EEG test on me and blood work to check the levels of the new medication (Dilantin) I was instructed to start on Friday. He was not available Friday so the neurosurgeon prescribed the Dilantin. Based on both of these tests he indicated that I need not continue to take the drug. I was glad to comply with that!
If the spasming/seizure activity reoccurs, he has a different approach than Dilantin that he would prefer to pursue.
Because there was no indicated conflict between the Dilantin, still in my system, and the chemotherapy drug, I began the 5 days of taking the chemotherapy drug today.

Bottom-line is that it feels like we're back on track!

Roller Coaster: May 23 to 30

2008-05-31T11:33:00.000-07:00

We have felt like we were on an emotional roller coaster this week.

 We had a delightful weekend with Susanne’s mother, who headed back to Toronto On Wednesday, May 28.
 Wednesday afternoon, I had an MRI brain scan. It showed some significant changes since the one two months ago.
 That same afternoon, the surgeon reviewed the scans with us and called in the hematology-oncologist to review them, too. The surgeon’s opinion is that there are signs of tumor re-growing. YUCK! The oncologist was less pessimistic though.
 On Thursday, we reviewed the images with the radiology-oncologist, and his opinion is that the hole/cyst that was left after the tumor removal surgery last summer has simply collapsed, and the brain lobe has rearranged itself somewhat. The dead/unhealthy cells that were around the edge of the hole/cyst have now merged and changed shape. He doesn’t think there are signs of tumor re-growth present. YEAH!
 The radiology-oncologist was apologetic about us being put in the middle of the doctors’ differences of opinion. He indicated that normally the doctors confer together and decide on what information should be provided to the patient.
 The team will review the images at the Tumor Board inter-disciplinary team meeting next week and see if they can come to a unified conclusion. [We are, obviously, voting for the positive report! And, having one less hole in my head sounds like a good thing, right?!] .
 It is my fact-based spirit-guided opinion that the radiology-oncologist is more skilled at MRI interpretation and his interpretation is correct…no tumor re-growth evident.
 All three of the doctors concurred that there were signs of some further neurological impairment, particularly in my leg, and their recommendation to the neurologist is that I not return to driving at this time. YUCK!
 One of the outcomes of the brain moving around, or whatever is happening, is that I once again experienced some mild spasming/seizure activity, on Friday, in my right arm, right leg, and across my stomach muscles. Blessedly the doctors didn’t hospitalize me, but they have added a new anti-seizure drug to my array of pills (Dilantin). We’ll see how it works over the weekend, and then I see the seizure neurologist on Monday. Right now it is causing some dizziness and fatigue. So, my cane is back out for walking outside of the house.
 In the meantime, my bloodwork done on Wednesday shows many low counts, but it’s just healthy enough that the oncologist has approved chemo for next week. The doctors really want it to go forward.
 The spot on the top of my head continues to struggle with healing as well. It blistered up again last weekend and popped open. The MRI images almost look as if some of the cyst collapsing in the brain could have been part of the blistering and leaking on the surface. But, that’s speculation at the moment. We are still applying Bacitracin daily to ward off infection. And, there are no signs of infection present.

On the better news front, I was able to work 16 hours this week even with the medical trips and losing Monday to the Memorial Day holiday, we had dinner with my Aunt Jean on Friday, and Susanne finished a new book this week, Happy at Home, Happy at Work. We are continuing to be active in Toastmasters, in the community, and with friends and relatives. We are managing to do almost daily walks and frequent Chi Qong exercise routines, too.

Media spotlight on Glioblastoma: May 12 to 22

2008-05-23T18:19:00.000-07:00

Other than continuing to be pretty tired, things were quiet for me, on the medical front, until the news surfaced about US Senator Ted Kennedy’s brain tumor. As the facts started to come out, it quickly became clear that his tumor type and location was very similar to mine (malignant glioma in the left parietal lobe)…with headlines screaming out at me about his awful prognosis of surviving only a short time. This was a challenge to my serenity around my own survival prognosis.

As the further information became public, it became very clear that a huge difference in his case vs. mine is that his tumor is, apparently, not in an operable location and mine was. What this meant, for me, was that the surgeon was able to remove all visible tumor and the continuation into radiation and chemotherapy, at the recommendation of the doctors, was to take of any tumor matter that was not visible. As of my last MRI in April (8 months after surgery), there is still no visible tumor. I am due for another MRI on May 28.

My son, David, has now reached the conclusion of his chemotherapy for brain cancer and his MRI scans are also clear of visible tumor. His tumor was also located in an operable location, and all visible tumor matter was surgically removed.

There were some wonderful family events over the last week or so:

1. My oldest daughter, Michelle, and her almost 4-year-old daughter, Karida, came to town to bring a friend from Dayton to Cleveland for medical treatment. We had arranged to meet them and David, his wife Christina, and 1 year old son, Aidan. Unbeknownst to us my youngest daughter, Leah, was in Dayton from Washington visiting her sister and surprised us by showing up at lunch, too. It was a wonderful having all three of my children and my two grandchildren together at the same time.

2. Over the weekend we drove to Pennsylvania to stay with my mother. We also saw my sister and her family. We went to church with my mother, and I thanked the congregation for their many prayers for my son and I and gave them an update on how we were doing.

3. My mother-in-law, Kay, arrived on the 22nd to stay a few days.

Unfortunately, I’ve now come down with a cold/cough/virus that has had me miss some work this week. My immune system isn’t fighting off germs like it used to.

Third Round of Chemotherapy: May 3 to May 11

2008-05-11T17:01:00.000-07:00

For the first time since last summer, Susanne was able to leave me alone for the weekend. She went to a women’s spiritual retreat in Michigan. I managed my food, rides, and got some home and yard projects done, too.

I ‘ve now completed the third (of six) rounds of chemotherapy. I went to work Monday through Thursday. I’ve pretty well established a routine for the weeks that I take the chemotherapy pills. I lay down for a nap after lunch, take the anti-nausea drug about 1-1/2 hours later, then listen to one of the guided imagery/hypnosis tapes, and then take the pills about 2 hours after eating.

The surgeon did a head check on me on Wednesday…all stable at the moment.

My energy level was pretty good until Friday morning, when I woke up very tired. I didn’t go in to work. Chemo now seems to be messing with the speed of my digestive system…like slowing it way down. Food and pills weren’t helping, so the oncologist prescribed Lactulose. I took one dose and within 2 hours the speed had reversed and was then in high gear. It kind of went back and forth for most of the weekend…boy was that fun.

We are checking out health insurance options for Susanne now that we are on our own for premiums (my part-time hours won’t let the company pay for our coverage). For now, we will just pay the company directly for coverage and it will normalize when I’m back on full-time hours by this fall. It’s a hit to our monthly expenses, but we are figuring out how to make it work. It may be cheaper for Susanne to be on her own policy.

Backtracking a bit in time…We were at the Gathering Place for a memorial service for our dear friend Stephanie Dornbrook on April 27, which was very sad to be at. We also attended both the Cancer Support Group and Spirituality groups this week and found both to be very nourishing and nurturing.

Also backtracking a bit, on the 28th I saw holistic practitioner Ken Koles for an appointment. The primary areas of focus were releasing old emotions from childhood stored in the muscles and mind that appeared to be interfering with healing, and cranio-sacral work to help with the flow of energy from my brain to my body. The sadness from the memorial lifted and my mood generally since the session with Ken has been much uplifted. My balance improved, too.

I was pretty tired through most of the weekend but I did muster enough energy for Susanne and I to celebrate Mother’s Day and go to a local theatre production, on Sunday, of a 1940’s era play called “Born Yesterday” (Garson Kanin). It was fun.We were overdue for a date!

Back on Track: April 15 to May 2

2008-05-02T15:00:00.000-07:00

Got a bit behind in updating the blog. Sorry about that!

I did see the infectious disease specialist:

 Based on the test results and his observations, he sees no reason to assume that there is a bone infection and wants Susanne to watch for surface infection and re-culture it if there continues to be signs.

 He prescribed no treatment, either IV or oral antibiotics, and asked that I see him again in 10 days for follow up. If there are further signs of infection, he thinks oral antibiotics would be better than the IV ones.

I also had the follow up visit at which point he indicated that he saw no need for antibiotics and I should continue with the chemotherapy treatments. This is excellent news!

I saw the oncologist and the next round of chemotherapy is scheduled to start May 5. He was interested to hear that 3 different intuitive healing type folks that I’ve seen in the last several months find that the chemotherapy drug, Temodar, that I’m using shows to be beneficial to me. This is very unusual...but who ever said I was normal.

Fatigue continues to be a constant challenge. My sense is that the fatique is more a result of the increased dosage of the anti-seizure medication than the chemotherapy drug. I’ve not had the energy to get up and go to the YMCA in the mornings with Susanne. On days without medical appointments or treatments, I’m pushing through about 3-4 hours of work in the morning, coming home very tired, eating lunch, and then sleeping a couple of hours. Usually I have enough ability to then concentrate for another 1-2 hours of work. Susanne and I are still consistently going for a walk, which helps to keep my red blood cell counts up. Our evening activities have decreased, although being home is then allowing us to watch old I Love Lucy TV videos, which consistently make us laugh. Great for stress relief and healing!

Chemo Restart and Further Challenges: April 7 to 14

2008-04-14T17:55:00.000-07:00

 The Chemotherapy was finally restarted Monday April 7, after a two-month hold due to the infection that was operated on at the end of January.

 My body was depleted from two weeks of a cough and cold, so I immediately had nausea challenges. So, even though I didn’t need it before, I used anti-nausea medication with each chemo dose this time.

 My energy level was strong enough that I worked my normal half day on Monday, Tuesday, and Wednesday. I was really dragging by Thursday so only went into the office for a couple of hours. On Friday and Saturday, I spent most of the day in bed. By Sunday, my energy was recovering and was pretty good on Monday.

 Unfortunately a further episode with infection on my healed incision cropped up over the weekend. We consulted with the Neurosurgical residentwho was on call. We expressed a high degree of reluctance to come into the ER, given the just completed round of chemo and my depleted immune system. He agreed, provided us with maintenance instructions, and indicated that we should contact the Neurosurgeon first thing Monday morning.

 When we contacted the Neurosurgeon, he immediately made time in his schedule for us. He examined the wound and expressed concern that the infection might be in the bone since it keeps coming back. He took a culture of it and bloodwork. I’ve been referred to an infectious disease specialist (that’s what they call the folks that administer the antibiotics at this hospital), and we'll see him on Friday morning. The Neurosurgeon indicated that further surgery may be indicated, too.

Prayers would be welcome for outcome of the testing and remedying the infection.

End of Waiting: March 20 to April 6

2008-04-13T09:16:00.000-07:00

Progress on the medical front:

Another MRI was done March 31, which showed little change since the Feb. 28 one. The oncologist indicated that this means the shadow showing up on the MRI is likely radiation after-effects NOT tumor re-growth….YEAH!
The Neurosurgeon indicated that the January incision is finally healed and took out the last of the stitches.
The oncologist also took blood work and indicated that the chemotherapy could restart on April 7.
The steroids have now stopped, so the wired feeling (see previous post) is gone. I’m feeling tired and foggy a lot now, which I’m attributing to the anti-seizure medication.
We met with a counselor at The Gathering Place when my tension and anxiety peaked, and we have started back attending more of the weekly support groups there.
Also had very good sessions with the medical intuitive and Chi-Gong healers that we have seen before. The medical intuitive scanned my whole body and found no cancer colonies (tumors) anywhere. She did however note some stray cancer cells are at times appearing in both the left hemisphere of my brain and pancreas. We are doing all that we can to enhance the health of my pancreas as a result. As part of that, she also indicated that I should stay away from sugar and use agave as a sweetener and continue to keep up my protein intake, particularly from non-meat sources. She also indicated that the particular chemotherapy drug I am using, Temodar, is well suited for me and that I will benefit from using it.

As a wonderful ending to all this waiting/uncertainty, Susanne and I spent 3 days at the Mind Body Wellness Center attending an ECaP (Exceptional Cancer Patients) retreat. It was a marvelous and refreshing time. Good for getting us mentally and emotionally back on track. I found it particularly refreshing to be with other cancer patients that share the positive/spiritual perspective I’ve chosen to take regarding this journey. The high point for me was the closing ceremony where we each chose photos that spoke to us of our journey. The two photos in the middle are the ones Susanne and I chose.

We also participated in an annual event called Black Marriage Day. This is a national event that features the renewal of wedding vows. Close friends of ours were sponsoring the first time this has been held in Cleveland. It was a very uplifting and moving event, and Susanne and I participated in the vow renewal with the other couples. We also had a Marriage Transformation booth.

Further Waiting: March 10 to 19

2008-03-21T06:24:00.000-07:00

The last few weeks has been an exercise in patience, to say the least. The doctors are not sure if the seizure activity was an after-effect of the radiation or indication of tumor re-growth. Because the surgery from January is still not finished healing, the chemotherapy cannot be restarted yet. The healing is slow because my scalp is fragile from the radiation treatments and there was abscess activity underneath the incision. And not being able to drive and arranging rides again.….grrrr!

We saw the surgeon March 19. There were still 4 stitches left in place. He removed 2 of them and is confident that he can remove the final stitches in 2 weeks (on April 2) and release my treatment to the oncologist. This would mean that the chemotherapy could resume on April 7. The surgeon also had a blood sample taken for analysis and ordered an MRI for March 31. He indicated that the oncologist would use the MRI in deciding the chemotherapy dosage. It is becoming clear to us that there is increasing concern that tumor re- growth may be occurring, which would not be good news. As we understand it at this phase of the treatment, MRIs are done normally every 3 months. The MRI the week of March 31 will be the third in a 6-week period. The bloodwork shows that finally my white and red blood cell counts are rebounding. My platelet count is dropping, though, so the doctors will carefully watch that.!

With the increased level of steroids and anti-seizure medication, I’ve been feeling wired (up a fair amount in the middle of the night and somewhat hyper), tired (I’m taking more naps), and foggy (I have some difficulty thinking clearly and staying focused on what I’m doing). I discussed this with the surgeon and he prescribed a ramp-down dose of the steroids to get me back off them. The dosage on the anti-seizure drug cannot be changed, and I understand it has fewer side effects than other drug choices.!

On March 11 I visited a new surgeon, who unfortunately confirmed that I’ve got an inguinal hernia that will need surgery. It’s not an emergency at the moment, so it will be delayed so that chemotherapy can re-start. It’s uncomfortable and I have to be careful about lifting and moving. God is certainly testing me with loss of independence!!

On the family side of things, we held a joyous first birthday party for my grandson Aidan, who is a bouncy, happy, healthy 24-pounder. My 3-1/2 year old granddaughter Karida came to town from Dayton with her parents (Michelle & Hooman) for the weekend, and my other daughter (Leah) drove in from Washington, DC and stayed until Wednesday. It was a wonderful time. Leah set up her massage table and worked on many family members, including Susanne and me.!

On the friend side of things, I was able to attend the second session of the Reflections on the Life of the Spirit course at our home, yay! The focus this week was on honesty and truthfulness. That evening (the night before the birthday party) we hosted 25 friends for a dinner (with help!). They were mostly people who have been sharing the Bahá’í Faith with interested people in Greater Cleveland along with our arriving family members. We also attended the monthly Spirituality Group at The Gathering Place, which was a wonderful sharing and meditative session.

In and Out Out of the Hospital...again: February 28 to March 9

2008-03-10T18:19:00.000-07:00

I returned home on Monday March 3...YEAH!

I was connected to an EEG for 2 days, that also captured video footage of me. That was a lot of fun…not! I was trapped in the bed most of the time as a result. A new much higher dosage of anti-seizure medication (Keppra), that I’ve been on a low dosage of since the second surgery in August, was found to apparently eliminate all the seizure activity. It has also apparently significantly reduced the long-term numbness I've had in the right leg and foot. They finally removed the leads on Sunday but wanted me to stay an additional day for further observation, medication adjustments, and an additional MRI.

The seizure-specialist neurologist was initially puzzled at my seizures, because I showed some ability to control them with visualization and touch, something that is very unusual for seizures. The EEG definitely showed seizure activity, however. The conclusion was that the activity was very focused in the area where the tumor was removed and largely occurring in sensory areas rather than motor areas. He termed them “sensory seizures”. He has decided that I should not drive for the next two-three months and then be re-evaluated. He wants to be sure that I am stabilized and not in danger of losing control of leg and arm movements, something that could be hazardous behind the wheel. So, while not unexpected, it's a disappointment (actually I’m pretty annoyed and frustrated!). I’ve really enjoyed driving again the last six weeks. It’s very hard to repeatedly lose my independence.

It is not clear whether the root cause of the seizure activity is swelling from the radiation, cell/nerve damage resulting from the radiation, or tumor re-growth. Without surgery, it’s not possible to be absolutely certain. Just part of the nature of this condition. The doctors have prescribed a low dose of steroids to bring the swelling down. Another MRI will be done in a few weeks to monitor the situation.

I began noticing a few days after discharge that the leg numbness was coming back. We recalled that the same pattern had occurred with the January hospitalization and discharge. Susanne observed that a common thread between the two occurrences was that, while I was in the hospital, I was not taking the vitamins and supplements, just the prescription drugs. We first thought that I should go off all the vitamins and supplements, see if the numbness went away, and then step-by-step reintroduce them. Then Susanne had a better thought. About a year and half ago she experienced Vitamin B6 overdose which had symptoms of numbness. I’ve been taking a fairly high dose of Vitamin B6 since December at the doctors’ recommendation to attempt to reduce the neuropathy/numbness symptoms. We decided to see what happened if I just stopped the B6…amazingly the numbness was substantially reduced within less than a day. That vitamin is now off my chart. This stuff can just get so complicated when one same substance can both reduce and cause numbness!!!

I reached a major milestone at Toastmasters this week. The first sequence is completing 10 prepared speeches with specific objectives for each. I presented my 10th speech entitled It’s Your Choice. The objective was to inspire. It was clear from the audience reaction that I had done so. It was great fun.

While I was hooked up the EEG equipment, on Saturday, Susanne started a wonderful weekly study group on a book called “Reflections on the Life of the Spirit”. I felt like I was there in spirit, maybe in an enhanced way from the EEG leads all over my head…who knows. I plan to be at future ones in person!

Craig Hospitalized with Body Seizures

2008-02-29T05:27:00.000-08:00

Friends: Craig was readmitted to University Hospital last evening after hours in the ER with them monitoring ongoing spasm/seizure activity from his right shoulder down to his right foot that began shortly after noon yesterday at work. Much of it was around his chest and right arm. He drove safely home and we went from there... An MRI was done last evening. It is showing "something" that was not on the last MRI in early January. It could be anything from tissue still responding to the radiation, to post-surgery changes, to a small amount of tumor re-growth. He will have an EEG this morning and be assessed by a seizure specialist. The neurological team will evaluate the MRI. They do not anticipate surgery at this point. Whatever is there is small. We hope to know more as this unfolds of course. We are concerned and hanging tough! Craig and I prayed before I left and he was listening to the musical long healing prayer on his MP3 player as the anti-seizure medicine dripped into his veins as I left the ER at 11 p.m. (there were no hospital beds, so he didn't get to a room until 3:15 a.m.). Craig's attitude, as always, is upbeat. As always, we appreciate your prayerful support. Love, Susanne p.s. More confirmations about our choice to take opportunities when we can...good thing we did Florida last week!

Week in Florida: February 15 to February 23

2008-02-24T17:59:00.000-08:00

Very little news on the medical front. I finished the round of antibiotics that were prescribed after the surgery and have returned to the assortment of vitamins and supplements I was taking before the surgery. Susanne just kept an eye on the incision and didn’t fuss about anything I ordered to eat while we traveled in Florida!

Our vacation week was to an 8-person townhome in Kawama Yacht Club, Key Largo, Florida with both of our mothers! My mom came over from Pennsylvania and flew with us. Susanne’s mother flew from Toronto, Canada. Susanne’s daughter Jennifer and her husband Frank, who live in Ft. Lauderdale, Florida, joined us for the first couple of days, too.

It was a delightful, restful time. The mothers joked about Susanne being “Matilda the maid” and me being “Henry the chauffer” since those were our support roles with them down there. The major decisions each day centered on whether we’d go to the pool or the beach and where we’d go for lunch and dinner and which card game to play…pretty weighty decisions. We enjoyed breakfast each day on the balcony. The weather was a great escape from the northern snow. Most days we didn’t even need the air conditioning on. The Mom’s kept checking the weather channel and reporting how much snow was falling at home!

The main sightseeing trip we all did together, including Jen and Frank, was a glass bottom boat trip out to the John Pennekamp Coral Reef State Park. This was a wonderful cruise, first out through a long channel through a Mangrove swamp and then out to the reef. The view of the flora and fauna of the reef (including some Goliath Grouper and Barracuda) was spectacular. Unfortunately the water was fairly rough as we were idling over the reef and several of our party got sea sick…oh well! We made jokes about family bonding over nausea and upchucking….

We also visited a wild bird sanctuary in time for the daily 3:30 PM feeding. That was a bit overwhelming and a bit more of a walk than our mothers bargained for. But interesting to see all the birds.

Susanne and I did several things together. We:

Walked down to the beach at sunrise each day and did our Tai Chi exercises at the end of a 400 ft jetty. That was wonderful! Walked in the evening and enjoyed the full moon. Unfortunately it was cloudy the night of the lunar eclipse, so we saw little of it.
Took a sunset cruise on a catamaran…it was advertised as no seasickness, so Susanne got brave enough to go out on the water again. Special bonus was the appearance of a full rainbow (both ends visible…right and left) just as we were exiting the marina out into the ocean. The whole cruise was a wonderful romantic time.
Visited the Museum of Deep Sea Diving, which was a really interesting look at how man has explored underwater for 1,000s of years. The centerpiece of the exhibits was a large array of various diving helmets from all over the world. As far as I’m concerned it took a huge amount of courage and trust in the surface crew, that were supplying the air, to be bolted into one of those things and go underwater.
Swam in a lake on the condo property that was seawater and had many fish. Someone told us afterward there was barracuda in it. We had seen large parrot fish, but that was it. And there were platforms for sunbathing throughout. So, we figured it was safe. Glad we had no problems with anything but minnows!
So, we’ve come back refreshed and browner than when we left. Great to have a week with no medical appointments or emergencies! Yay!

Second and third week after Third Surgery: February 3 to February 14

2008-02-15T11:15:00.000-08:00

It was actually a fairly peaceful week and a half on the medical front and I was able to work 23 hours (most so far since the surgery last July) for my employer, the week of Feb 4 and about 20 hours the week of Feb 11. I also made significant progress in getting our personal tax information ready to turn over to the accountant. YEAH!

We got specific feedback from the Block Integrative Cancer Care Center about potential interactions of their recommended vitamins and supplements with the strong antibiotics I’m on until February 21. We adjusted the regimen accordingly. I was actually feeling more and more tired as the week began and as the vitamins and supplements resumed, I was feeling much better. I guess the handful of pills actually works (shoot!).

We also had a mini-milestone occur—my first doctor’s visit in six months by myself. I had an appointment with the radiation oncologist to review the recent MRI. Susanne had a lot on her plate that day and I indicated that I would be fine with driving myself to the appointment. It was a struggle for her to detach from being there, but she ultimately agreed. I still wore my “I Love My Wife” button. She normally wears her corresponding “I Love My Husband” button. We have gotten pretty well known around the hospital by wearing these. Many of the staff asked after her and sent their greetings. The radiation/oncologist showed me the recent MRI scan and compared it with the previous. He was very pleased to show me that there was no visible tumor matter in evidence. He did detect a slight degree of problem with maintaining balance when he asked me to walk toe-to-toe. He was not overly concerned and it has since improved.

Susanne continues to diligently nurse the incision, per the surgeon’s instructions, and we returned to the surgeon’s office on February 13th to have the incision checked and some of the stitches and all of the staples removed. The staples were particularly irksome as they were located at exactly the right location to be in the way if I happened to bump my head on the car door frame….OUCH!! I barely noticed the stitches and I took no pain killers since the morning of the third day after the surgery.

Dr. Sloan explained that the condition of my scalp was somewhat fragile due to the radiation treatments and multiple surgeries. He indicated that performing, what he called a wound revision was very unusual. In the 13 months he’s been at this hospital doing brain surgeries full time, he has done 3 wound revisions…2 of them mine!! Overall he was pleased with how the wound was healing. The one down-side for me is no snorkeling on our upcoming trip to Florida with our mothers from Feb 16 to 23. Unfortunately, the surgeon indicated that I should not do that!! No sun on and no pool water or sea water in the incisions. Oh well…I’m sure we’ll have a great time anyway. One nice side benefit from the appointment was that my son David had an appointment at the same time, so we got to spend time together and get new photos of him and his family.

We also went to the Gathering Place for two excellent programs:

Dr Stephen Post spoke about his book “Why Good Things Happen to Good People”. He is a Professor of Bioethics & Family Medicine in the School of Medicine, Case Western Reserve University and is also President of the Institute for Research on Unlimited Love (IRUL) - Altruism, Compassion, Service. His talk was very poignant and the audience participation was marvelous. I was able to share about my spiritual journey with cancer, which the presenter really appreciated.
Movie Night was Kevin Kostner’s "Field of Dreams" followed by a discussion on how the movie’s themes apply to our journeys with cancer and caregiving. I found that the movie contained a very powerful metaphor for me of my journey. What I shared was that just as the main character of the movie was following his spiritual inspiration, despite many nay-sayers, I was doing the same thing on my path.

I was also able to share about my spiritual/medical journey at Toastmasters as I presented a prepared speech with the objective to persuade with power. I called the speech “Participant or Passenger”. It was really fun to do.

Another event that took place this week was that Susanne did a presentation and book signing at Joseph Beth Booksellers. That was also fun.

Back in the Hospital: January 27 to Feb 2

2008-02-02T16:55:00.000-08:00

On Sunday, the infected area at the end of the incision seemed to be responding well to the Silvadene and Goldenseal treatments, but I noticed a swelling and tender area about an inch away from that spot, which caused us concern. You’ll recall, from the Jan 20 to 26 post, that the surgeon had suggested surgery to clean out the infection, if the Silvadene was not successful. Our decision on Sunday was to accept the surgical option, and, due to the low level of my white blood cell and immune system indicators, felt that this should happen as quickly as possible.

We headed down to the ER, once again….Once we finally saw the neurosurgery resident, he consulted with the surgeon and they agreed that surgery was indicated. They were able to come up with a surgery time of noon the next day. Because it was already 5 PM, it was decided that admitting me would be best so all the pre-op tests, etc. could be carried out. The alternative was to go home and be back by 7 AM the next morning. In either case, I was not to eat or drink anything after midnight.

Early the next morning I was advised that I was no longer on the surgery schedule for Monday, but would be for Tuesday at 11:15 a.m.. I promptly ate some food, they completed all the pre-op testing, was discharged, and I went home for the day.

On Tuesday, I checked in through the front door of the hospital. All the previous surgeries, I had checked in through the ER and came to surgery from a hospital room. In the Pre-Op area, Susanne and I asked whether it made sense to do a needle biopsy of the swelling before going ahead with surgery. One of the doctors explained that because the scalp has many layers the presence of an infection could be missed by a needle biopsy and there was also risk of infecting a clean layer. We recognized this as another step on the Fact-Based Spirit-Guided Path and indicated that the surgery should proceed.

Please be advised that this photo and explanation of the surgical area on my head may not be for the faint of heart but are illustrative of what was actually done. If you’re squeamish, you may just want to skip to the next paragraph.

The conclusion of the surgical and infectious diseases folks was that I have a staph infection. It was clearly resistant to the Keflex regimen I was given earlier in January so they prescribed a three week regimen of Ciprofloxacin and Rifampicin to be taken in pill form…..not another round of IV infusions like in September, yay!!

Because of the nature of the prescribed antibiotics, we provided the folks at the Block Integrative Cancer Care Center with a detailed list of all my drugs, supplements, and vitamins and requested that they review them for any potential negative interaction issues. We expect a report from them by Monday or Tuesday. Until then, we’ve taken most of the supplements and vitamins out of my diet.

I am to return to the surgeon’s on February 13 to, hopefully, remove the sutures and move forward with the chemotherapy.

I had initially planned to go back to work on Friday but, was pretty tired so stayed home. I have taken no pain-killers (even Tylenol) since Friday morning….YEAH!!

Today, Saturday, I feel much more energetic so plan to do some work from home today and tomorrow, including moving forward with preparation for submitting taxes, and expect to be back at the office on Monday.

The journey continues even with occasional speed bumps!!! The new hypno-therapy session tape (1/22/08) has been most beneficial.

Home From the Hospital

2008-01-31T18:09:00.000-08:00

Surgery went well on Tuesday. I'm back home now with some additional incision area to heal. Otherwise I'm doing well. Thanks for all the prayers. Craig

Craig in Hospital/Surgery Again

2008-01-27T19:00:00.000-08:00

Friends: Craig was just admitted this evening to University Hospital due to the head infection. They plan to do surgery on Monday, January 28 to clean it out. His white blood cell counts are low, so his immune system is somewhat depressed. Your prayers for him/us are gratefully received. Love, Susanne

Week 4 of Second Phase of Treatment: January 20 to 26

2008-01-27T08:52:00.000-08:00

When we saw the surgeon again on Wednesday, he was dismayed that the infection on my scalp was still active after the antibiotics and instructed that the planned chemotherapy treatment for the week of January 28 should not happen. My low white blood counts are clearly making it difficult to fight the infection, and chemo would lower the counts further. However, Dr. Sloan indicated that delaying the chemotherapy for a short time is not a major concern as my MRI scans have continued to show no visible tumor growth. He offered me surgery as an option again, which I declined. He then prescribed silvadene cream to be applied twice daily with the wound to be left open to the air as much as possible. The situation will be reevaluated next week.

If the doctors had recognized the infection in December, when we first brought the head swelling to their attention, the first round of chemotherapy would, most likely, have also been delayed so that my body’s immune system could deal with the infection first. You may recall that my white blood cells (immune system indicator) dropped dramatically after the end of the radiation/chemotherapy treatments in Oct./Nov. and have stayed low since. My T-cell count (lymphocytes), another part of the immune system, has also been low since then as well. The neutrophil and platelet levels have somewhat recovered, but the red blood cell related counts are still lower than normal too, to which I attribute my continued fatigue (I need a nap every afternoon). I’m also starting to realize that some of the medications I’m on may be contributing to the fatigue as well.

I’m noticing that I felt much more engaged in the treatment when it was daily. The long periods between chemo sessions make it harder to feel engaged. I’m aware that losing concentration on healing though is unwise…there are still months ahead of concentrated cancer-fighting to go.

Other notable events of the week:

We went to Pennsylvania to have treatments from my sister (ortho-bionomy) and her colleague Jeanie Anderson. We really felt well taken care of as we headed home. It was great to be able to do most of the driving!!
I participated in another hypnotherapy session, that I tape-recorded, to reinforce my new plan for this phase of the treatment.
Our monthly Spiritual Oasis devotional meeting was on the theme of the oneness of mankind and love. At Toastmasters the next evening, I then led the group in extemporaneous brief talks about race unity and Martin Luther King.
We launched efforts to write a book that would share anecdotes and short stories from both us and many others about how cancer has affected people’s marriages and how their marriage has supported the cancer experience or grown through it. We are welcoming submissions. (The details are at the link above.)
We registered for the spring retreat at the ECaP Health and Wellness Center. I am really looking forward to connecting with this organization. Its work has supported my commitment to being an exceptional cancer patient and approaching cancer in a very empowered way.

Week 3 of Second Phase of Treatment: January 13 to 19

2008-01-23T14:39:00.000-08:00

Much of the week was involved with the infection near the incision. I completed a 10-day course of oral antibiotics (Keflex) on Tuesday and saw the neurosurgeon again on Wednesday. This time he was able to observe significant discharge, as the Keflex treatment was not successful. He instructed us to flush the wound twice a day with hydrogen peroxide, apply a topical antibiotic, and leave it open to the air when I’m not wearing a hat. We found that the Bacitracin ointment he suggested seemed to make the wound worse, so we have been applying a natural antibiotic (Colloidal Silver) instead, which seems to work a little better. We will see him again next Wednesday. He has mentioned postponing chemotherapy and possibly doing surgery to remove the infection (obviously this is a very undesirable option to me!) I still have a fair amount of fatigue, so I nap for a couple of hours every afternoon. As Susanne is trying to get lots of healthy foods into me, I’m finding some combinations just don’t taste good anymore. I’m not really able to articulate exactly what foods those are until I taste them, so deciding what to cook has been kind of frustrating for her. Other notable events of the week:

Being able to now drive myself to work and elsewhere has been wonderful!!
My daughter, Michelle, drove up from the Dayton area (about 3-hours away) to bring a friend to Cleveland for medical treatment. We had lunch with them and my son, David, and his family. It was a quick visit but fun.
We attended the monthly Spirituality Group at the Gathering Place. We find these sessions to be very nourishing/nurturing. The leader of the group offered us copies of this prayer attributed to Julian of Norwich: All shall be well and All shall be well and All manner of things shall be well.
I had lunch with David again. We are trying to schedule getting together as often as we can, which is wonderful. He pronounced my pick of Beach Club Bistro as a “quality” place. He’s worked at a number of high-end restaurants, so he’s got discriminating taste!
I made major progress on getting ready to file our income tax return by getting all of the business income/expenses analyzed and summarized so that they can be entered into the Tax Organizer document our accountant supplies us with. This is generally the most complex portion of the preparation work. If I can get the personal portion done next weekend, then I’ll be ready to finish up getting ready for the accountant.

Week 2 of Second Phase of Treatment: January 6 to 12

2008-01-13T08:51:00.000-08:00

It was another week of Ups and Downs.

Ups:

 The MRI scan showed no visible tumor re-growth and no infection involvement below the surface. (YEAH!) This MRI had been moved up from February 4 due to the presence of infection around the incision that I noted in the previous post.:

 I passed my driving fitness test at the Euclid Rehabilitation Center, so I am now permitted to drive for the first time since July. (Double YEAH!) The restriction was due to the leg spasming I was experiencing just prior to the tumor being diagnosed and the ongoing muscle/nerve recovery and numbness in the right leg. The surgeon interpreted the spasms as seizure activity which, under Ohio State Law, means an automatic 6 month without driving. It feels great to be behind the wheel again. This will take one burden off Susanne, who prefers to drive a lot less than she has been. My first trip was to the Toastmasters meeting on Thursday, as Susanne wasn’t feeling well enough to go. I had loaned my truck to a friend the last few months. Now it’s back home!!:

Downs:

 At 2:15 AM Sunday, January 6 our good friend Stephanie Dornbrook peacefully passed from this world (she had pancreatic cancer), surrounded by her loving family. The standing room only crowd at the funeral home on Monday was a clear testimony to the many hearts she touched, including mine. As I shared at the funeral service, my life has been intersecting with Stephanie’s since we first met in 1971. She and Dustin were newlyweds and I was living at home with my parents after my freshman year at college. We met at a Bahá’í conference and the three of us immediately became friends. Our lives continued to intertwine over the years, as our children grew up together. She also officiated Susanne’s and my wedding. I will miss her. We took her husband, Dustin, to dinner on Tuesday night before support group meetings at The Gathering Place.:

 We saw the surgeon on Wednesday regarding the infection on my head. Unfortunately, it didn’t look as bad when we were at the doctor’s as first thing in the morning. It looked worse Thursday and Friday mornings though, so we went back and saw the nurse on Friday…and yet another blood test. It is annoying to have infection come up from the surgery almost 5 months ago, although we keep hearing from people that it can take a long time for dissolvable sutures to actually dissolve and suture problems aren’t unusual. Fighting off the infection even with taking an antibiotic is a bit harder post-chemo though, since my white blood cell count is a bit low. I’m taking more anti-oxidants and eating more oranges to help.:

We’ve been spending more time since returning from Florida just doing quiet, home activities, trying to conserve our energy and heal. One of my Christmas presents was a set of DVD’s of the enhanced three original Star Wars movies. So, we’ve watched those and other movies, played Scrabble, and read books. I’m working this weekend on doing the end-of-year Marriage Transformation finances, and we’ve both been cleaning out files and organizing our offices. Lots of naps too of course! The post-chemo fatigue (and constant doctor’s visits) is challenging, especially since I’m not able to work as much as I’d like.:

Susanne has been open to making some adjustments in my diet to increase my food intake with my decreased appetite. Homemade milkshakes and cottage cheese have tasted so good!