Tuesday, December 9, 2008

First visit on Gleevec

First of all I would like to thank everyone for their incredible outpouring of support and offers of help. There are prayers for Tyler and I being said in churches in Star Lake NY, in Ohio, and here in the Seattle area. I have literally drawn strength from your words of encouragement. Both Cynthia and I are eternally grateful to our families and friends.
Many have asked what they can do to help, and after talking to Mandy/Tyler/Cynthia, we all agreed that we'd really appreciate if you took time to read over the symptoms. Mandy has done a great write-up of the symptoms to look for that both Tyler and I had. The earlier they can detect this, the better your chances are. You can see her write-up by clicking here. (It will open a new window so you won't have to navigate away from this page).
They had drawn bone marrow and blood on the first visit, and this visit was the first follow up on the results and hopefully a treatment plan. We did get a nice call from Dr. Petersdorf's nurse on Friday that the blood results had come back, and the initial review showed that I was in the chronic phase. It did put us at ease a little, and we made an effort to get some regular stuff done like getting our Christmas tree and some shopping done over the weekend.
My hip was pretty sore over the weekend from where they did the Bone Marrow Aspiration. Thanks to Tyler I had elected to opt for all the drugs that they would give me, but when all that wore off I could feel it. Cynthia said that the Dr. P bent the 2nd needle in trying to get into my Bone Marrow. She calls it stubbornness on my part, I just think of it as self protection.
The visit at SCCA started with blood drawn, which will become the standard procedure. I was encouraged that my weight had gone up a few pounds, since I had been eating small but frequent meals. One of my problems is that my spleen is the size of a football, and putting pressure on the stomach so I haven't had big appetites. Knowing all this has explained a lot, so I have tried to adjust. On the first visit, they had also put me on a chemo drug, just short term to knock down my WBC numbers.
The visit with Dr. P went very well in our mind, his demeanor is very nonchalant about the whole thing. Don't get me wrong, I know he takes this very serious, but in describing the treatment and expectations, the first line of defense is pretty standard. I'll go weekly for a month and get measured, then monthly, and then every 3 months after the first 3 months. As Cynthia's mom put it, it's like pregnancy visits just in reverse. We got to discuss milestones and what we could expect. My spleen should return to normal in 3-4 weeks. He couldn't predict what my WBC will do since everyone reacts differently, and it will be almost a month until my normal immune system starts producing normal cells. He described it as if my normal production took a holiday since the leukemia was causing an over abundance of most cells. My next major milestone will come between 6 and 12 months, when they expect to not see any leukemia in the blood. This is again if I follow the happy path of the 90%. My hope is to start feeling better in a month or so, since Cynthia is now 6 months pregnant and she will need me more and more.
That night was a very nice surprise waiting for us at the door. Our wonderful neighbors Mike and Joy had prepared a complete meal, along with sides and toppings. She even knows me well enough to prepare it in such a fashion that allowed me to go for meat, cheese and toppings! It was perfect timing since we had already determined that we were too tired to cook.
WBC - 150,000 from being on the Chemo drug for a few days.
By the way, lost in all this is that my bad cholesterol was great, it was down to 106 ! I'm thinking that means steak once I feel better, something to look forward to !!
Update on Wednesday Dec 10th - Took my first dosage of Gleevec this morning and I seem to react to it fine. I'm very tired, but that is probably because I have a cold and just everything going on. Some side effects will be expected, but keeping our fingers crossed.
There was a note at the patient coordinators desk at SCCA - "Don't worry about the world ending today, it's already tomorrow in Australia"

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