Monday, July 27, 2009


It has been quite some time since I last updated my blog. Time seems to move quickly even when you are restricted by a terminal illness in what you can do and where you can go.

Shortly after Father's day, I was admitted back to Karmanos with severe abdominal pain and nausea which mysteriously resolved itself after a couple days in the hospital. After I returned home, my pain control doctor finally found the right combination of pain medication for handling my abdomen pain, which was a great relief. Although my level of pain had decreased, I was having a more difficult time with mobility and sitting/standing. Trips to the clinic were becoming more difficult each time, draining my energy for up to 24 hours afterward.

I met with my clinical trial oncologist to discuss options for future treatment and we were informed that, due to my reduced physical capabilities, I would not be eligible for additional phase I treatment at this time. Deb and I had anticipated this beforehand and had agreed that it was time for me think more about handling the side effects of my cancer rather than treating it systemically. As you can imagine, this was not a decision that we took lightly, but we came to the conclusion that hospice care made the most sense for me.

I didn't know much about hospice before a representative from a local provider met with Deb and me in my home. Hospice essentially takes over my medical care (with a few rare exceptions). I have a doctor, physicians assistant, nurse, and social worker assigned to me. Thus far they have been very responsive to my medical and other needs. Fortunately I was able to keep my wonderful pain team from Karmanos who has been so proactive in addressing my pain. Hospice has provided me medical equipment such as an adjustable hospital bed and wheelchair that make life more comfortable for me.

I haven't had a re-occurrence of the headaches that led to my brain surgery a couple months ago. Hospice has proactively put me back on steroids (which I was on during my stay in Karmanos before and after surgery) to reduce the chance that the headaches will return. I haven't had a MRI since my surgery, so we don't know if the tumor above my left eye has increased in size. We had originally planned to do radiation on this site, but since I have gone on hospice this is no longer in the plan. In doesn't really matter since radiation will not treat my disease systemically. One of the positive effects of the steroids has been an increase in my appetite. This has been nice, especially after dealing with the recent bouts of nausea.

Deb and the kids are handling this whole situation so well; they amaze me every day. Morgan and Landon obviously don't understand my illness but, like so many of you out there, they pray for "daddy to get better." Deb and I are so thankful for all of the cards, letters, emails, etc. that have been such an encouragement to both of us. We are thankful for each and every day we have together.

God Bless,