Disappointg news and a change of plans

FRIDAY, AUGUST 01, 2008 10:48 PM, CDT
Finally back at home after a very long day and a half. My day started on Thursday with a Pet Scan before my meeting with my treatment team. It was a pain in the ass, having to remain motionless with my arms above my head for 40 minutes. However, it was done with and I just had time to kill for a few hours. It wasn't so bad wasting time at the hospital. It was still early in the day and I was feeling well.
At 1:30 my Dad and Kate met up with me for my appointment. Things started off well, but again the team took a bit longer than expected to come back in. Kate began to feel nervous again about their news.
When they came back in, her thoughts were correct. The results of the Pet Scan showed signs of cancer on a right rib and at the bottom of my left lung. This was a change from what the doctors were expecting and what I went through the first time around with treatment. It was explained that my treatment plan needed to change now that the cancer was not isolated to the mediastinum. If the cancer was isolated to one spot, it would be easy to treat with radiation to eliminate it. Their is no connection between the lymphatic system and the bones, so it was explained that the cancer had to have spread through the blood. Even if the chemotherapy gets rid of the cancer activity in the rib and lung areas, it is presumed that ther could be small traces of cancer cells anywhere in the body at this point. Therefore the radiation process will be of no use, and the secondary intervention after the chemotherapy will be a bone marrow transplant.
This is the first time that a bone marrow transplant has been brougt up, so its not something I know a lot about yet. There are two general types of transplants that are used...autologus and allogeneic. My lead physician met with us and explained that while my current tumor looks like Hodgkins disease, he would not treat it like that. A HD relapse would usually be treated with an autologus transplant, which uses my own stem cells. His belief after watching how my tumor has attacked my body is that this treatment would not work.
So an allogeneic transplant, of which there are two options, is being pursued. I had my blood drawn last night to be used to find a match. With these type of bone marrow transplants, there is about a 25 percent chance that a sibling would be a match. 1 in 4 ain't bad...however, I have 4 siblings who because of adoption will not be matches. My dad helped me get papers in today to the courts to contact my birth mother. From the history I know about, it seems unlikely that my birth-parents would have had another child together. My doctor was not optimistic that a half sibling would have any better a chance of matching than anybody else in the general bone marrow donor pool. My brother Mike, people at my dad's workplace, and Kate's dad have already asked about getting tested to be a donor. Its unlikely that anybody who signs up now would a match for me, but I'll probably be relying on somebody who signed up for another person. So I'd encourage anybody who feels the desire to help anybody with this type of condition to become a potential bone marrow donor.
What I was told is that although the transplant takes just a few hours like a simple blood transfusion, the hospital stay will likely last from two weeks to forty days. Thats a hell of a lot of time to spend away from home. I spent 3 nights in the hospital back in January, and I felt like I was losing my mind then. So I can't imagine being away from home and Isaiah that long. However, its what I'll have to do. Kate and I will manage, however, I know it will be hard on her to not have me around.
The good news from yesterday is that I was able to get started on chemo. The change of plans from radiation to bone marrow transplant means an increase from two rounds of chemo to probably four. It is supposed to take three months for the transplant to fall in line, so the doctors want me to remain in treatment up until that point. Hopefully the EPOCH-C treatment will do in this tumor like the EPOCH-R did the first one. I took the Campath last night and had chills and a fever. My temperature went over 102 at one point, but came down fairly quickly over the next few hours. I didn't sleep for a few hours despite being exhausted. However, knowing how the chemo makes me feel I have no worries about sleeping a lot over the next few days. The doctors felt that my response to the Campath was pretty normal. Some people get a really bad rash as well with the infusion, but I seem to have avoided that. I was also told by my research nurse that the side effects don't always come back with the other rounds of Campath infusion. So if last night was as bad as it gets with this treatment, then I'll be much pleased.
After the Campath I got hooked up to the EPOCH. The EPOCH treatment is outpatient, which allows me to be at home with a daily bag refill every 24 hours for the next four days. It felt great to be home and see Isaiah tonight and to have dinner with Kate and my parents on the deck. It beats sitting in a small, uncomfortable hospital bed and eating the same food over and over again. So I'm back to taking one day at a time. The long term plan has changed, but I still have to take one day at a time and get through this with a great attitude. Thanks for all of the support from everybody who has read and commented. All of the prayers and well wishes definitely help the family and I out.