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

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)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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:

1. Had a delightful boat and swimming outing on Lake Erie with our friends Rebecca Li and David Stickler on Sunday, July 6th.
2. 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

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

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

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:

1. 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
2. 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!
3. If the spasming/seizure activity reoccurs, he has a different approach than Dilantin that he would prefer to pursue.
4. 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!