So for those of you wanting the quickest version of the latest update on John, here it is...
MORE WAIT AND SEE.
For those of you curious about the extended version, read on...
John finished his 8th cycle of chemo, and the hope was that since they changed the chemo up a little by adding cytoxin, he would hit the magic number of .3 for his M Spike. No such luck. That mother f*&$ing M Spike stubbornly has chosen to stay at .4. The original plan was that the there would be no follow up appointment with his oncologist...that the test results would be sent to the BMT Dr. and he would call us to move things forward once he reviewed everything. Apparently, he didn't like what he reviewed and so he had his nurse call us to say that John had been taken off the transplant board...that he would not be getting a transplant right now...and to go back to oncologist.
This made for a long depressing weekend of wondering what would be next because the last four cycles of chemo haven't seemed to make a difference in his numbers at all. Today we went to see his oncologist and she still believes moving forward is the right thing to do. She wants to proceed with the work up to see if there is any residual disease left in his bone marrow. If the bone marrow is disease free, then he will proceed into an allogeneic bone marrow transplant, but he will not be a part of the clinical trial study. If there is a small amount of disease detected in his bone marrow, then she will be recommending an autologous bone marrow transplant, where they use his own bone marrow instead of donor marrow.
Tomorrow begins 3 long days of the vital organ testing workup. Wednesday morning starts by meeting with the financial counselor. I guess the purpose of discussing finances first is to put you in a bright and chipper mood right before you get a bone survey, muga scan, and then a three hour psychosocial with the Moffitt shrink. That aught to go real well. All of this is followed up with a visit to the Moffitt vampire lab where they collect more blood for additional labs. Thursday starts with a trip to see the social worker, and the physician assistant; then he gets an EKG, has a pulmonary function test, and then a CT done on his chest and sinuses. And finally, Friday is his bone marrow biopsy...this is the easy day.
As you can see - having every test under the sun performed will yield a FULL picture of everything going on. The oncologist will call us Monday or Tuesday of next week with preliminary results of the work up and a decision regarding his transplant. Obviously, I am praying for everything to come back clear so that he can get an allogeneic BMT because it is the closest thing they have to a cure.
One thing I have learned is that everyone's journey through cancer is completely different. It seems like common sense, but it's another story when you are doing your best to live with it. You find yourself talking to other people and comparing how things are going. When you meet someone who hits their magic number in less than half the cycles as John, it can really make you crazy thinking about it. On the one hand it makes you hopeful that things will be ok; that this isn't a death sentence. On the other hand it is frustrating because you wonder why does it always have to be so hard. Why can't it be just a little bit easier?
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