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