Tuesday, August 01, 2006

News of discharge and beyond...

Had a very important meeting today with Dr. Wexlar. Here's the scoop. This week my chemo is focused, for a change, not on killing bad cells, but bringing back the good cells that I have and building up my immune system. This will be done with hormones (the L-aspariginase shot) growth factor, etc. What we are attempting to do is what I rationalize in my head as raising my "autoimmune quotient." That is, the medication and treatment I receive this week will raise that quotient so that I am healthy enough to live on the outside. My autoimmune quotient right now, Dr. Wexlar said, is about .28 of some measurement I'm not entirely sure of the name. During the week, my antibiotics, antifungals and other autoiummune builders will slowly be scaled back, while the growth hormones etc will be increased. When that autoimmune quotient reaches .50, the very next day I will be released, provided I have acquired no infections in the meantime. What this means is, at the very earliest I will be discharged to outpatient care by Friday night, provided no infections and everything going as planned. Big ifs. At the very worst, I think, I will be discharged by the beginning of the week.
Regardless of when I am discharged there will be about a week of downtime between the end of module "A" of my chemotherapy and the beginning of module B. Dr Wexlar said that it is possible for me to return to Binghamton during this time, but I am thinking that is probably not the best idea. To me, it's not worth the risk of the drive or possible infection. I would rather get settled here in my new home in Buffalo during that time. I have to donate sperm so that Diane and I can have kids when this is all over, and that must take place before Module B begins anyhow, so I will be busy visiting that clinic, too.
I have aain contacted the social work housing coordinator about a place to stay , and informed her that I could be discharged as early as Friday night. That way, if we have to push things back, at least I will be in line for the places that I would prefer. So we will see how that goes.
I then asked Dr. Wexlar if a decision had been made about the bone marrow transplant. One has. The doctors want to proceed with the typing for a bone marrow donor from the list of 42 that was found in the nationwide databank, with the ultimate goal of giving me a bone marrow transplant. Even if they had a donor lined up today, however, they would not proceed with the transplant until at least module b, c, and possibly d of my chemo were completed. Some of what module b and C address is leukemia inside the central nervous system. Though the doctors have no indication of any lukemia inside the CNS, it is not prudent to go ahead with a BMT without treating first and making sure no leukemic cells are hiding in the spinal fluid, cord or brain. And it is very hard to go back, once a transplant has taken place, because the doctors don't want to kill the shiny new bone marrow cells that will be growing inside me. At the same time, module b and c double back and kill any leftover lukemic cells in the bone marrow, which have to be completely gone before transplant can occur.
Even if I had a bone marrow donor (actually no one donates marrow, they donate stem cells overproduced as a result of medication. But we'll call it marrow now for short) ready to donate tomorrow then, It will be a month or three before the transplant can proceed. In the meantime the doctors will test, retest and finalize candidates, so when I am ready and the donor is ready, all the planets will fall into place and I will have a perfectly successful bone marrow transplant, and ultimately I will be cured.
Dr. Wexlar told me, and wanted me to tell all of you, that this is a long process. Understand that as good as I am feeling today (which is great) It will probably be two years before I feel this well again. Two years is a long time, but it's my only and definitely the best alternative. Though I may do better than that timewise, in two years I can be sure of a cure. I'll have new bone marrow and a new immune system for the price of one. I will be out of the hospital for a long time and home and back to work before then, but that's the actual timeframe for a full cure, in case anyone wants to roll that around in their heads and think about it for awhile.
So, when all the planets are aligned here in a couple of months and a donor has been lined up, this is what I can expect. I will be readmitted to the same floor over here at Roswell Park. Going to see what I can do to get a better view next time. Be nice to see the city! Anyhow, I'll be readmitted and they will immediately start a new, stronger regimin of chemotherapy that will last at least a week, as well as antibiotics, antifungals, basically reestablishing my artifical autoiummune shield. After a bone marrow biopsy to confirm that yes, indeed, all the bad cells are now gone, they will stop the chemo and start the transplant. What they are transplanting is not bone marrow. The donor will be given doses of hormones to make him or her overproduce stem cells from his healthy bone marrow. These stem cells will fill up his bone marrow cavity, and will spill over into his or her bloodstream. These stem cells form the basis for red cells, white cells, hemoglobin, platelets, and other clotting factors in my blood. These stem cells will then be harvested in a machine that I imagine is quite like the platelet donation machine some of you will be donating your platelets into within the next few days. The stem cells are taken, the donor's blood is returned. I will then receive these stem cells into my bloodstream via a transfusion, the same way I receive all the other blood products though my central line. I will also receive anti-rejection drugs, as even though I will have a perfect match for the donated cells, some alleals etc may not be exact, and we need to suppress the body's natural defense mechanism to avoid the stem cells rejecting my body.
These stem cells are very smart little guys. They want to go to to thier home, that is they want to find the bone marrow cavities. Henceforth they will find a cavity and start doing what they do best. Divide and conquer. From what I have read, in about 4-6 weeks they will have restored much of my blood creating function. They will begin to make good blood on their own! I will start to get a new immune system (we'll be watching the Autoiummune Quotient) Of course nothing will be perfect and I will not be cured yet, but I will be on my way. Remember what Dr. Wexlar said. To feel as good as I do today will probably take two years. Let's understand that, become accstomed to that and hopefully we will be pleasantly surprised any good results that might happen sooner.
I am very relieved to have heard this news today. At least, finally, we have a longterm plan we can follow and look forward to and there are many fewer what-ifs. We've got a plan, and now it's time to live it. I know with everyone's help I'll succeed and I will be cured. Now it's time to go about doing it.

Thank you everyone's love, care and thoughts so far. I couldn't have made it this far without such fantastic support, and I am thankful beyond words for everything that I have.

Thanks again.
Matt

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