Explanations and Party Invitation, 2-27-09

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

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

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!