Well, the thing about cancer is that it is unpredictable. If it were straightforward and clear, there would be a cure, and everything would be much more simple. My FIL had an old colleague look at John's biopsy slides and she reported that there is the presence of other cells that are not present in Hodgkin's disease. Basically, the way that Hodgkin's disease is identified is by the presence of certain cells called Reed-Sternberg cells. Upon initial inspection, these cells were present, but there are these other cells (cd20) that are also present. So, the bottom line is that his diagnosis is not as simple as it first presented itself to be. You can imagine my disbelief in finding this out. All my previous worries began to flow back like the flood gates had been opened. I felt like we were finally reaching a place where John could begin treatment and on the road to recovery, and now they were telling us he had something different.
They have diagnosed him with a so called "Greyzone Lymphoma." Basically, he has the classic symptoms of Hodgkin's, but he also has the presence of these cd20 cells,which are present in b-cell lymphoma. Since this is a rare form of lymphoma, treatment is tricky.
We are lucky in many ways though. The chemo that treats Hodgkin's has not shown to be effective on this greyzone lymphoma. Had John started treatment without knowing this, he could have potentially gone through the whole cycle of chemo without it working, and perhaps having to undergo all the diagnostic tests again. In addition, my FIL found a study at NIH that looks particularly at treatment for this type of lymphoma. We spent most of today with the researchers, talking with them about the treatment and study.
Tomorrow will be another long day. We'll be heading over to NIH in the morning, where John will have additional blood work, x-rays, CT, and then have a blood transfusion (he's very anemic and this will help with his fatigue). Friday he will meet with the doctors and begin chemotherapy.
The treatment is pretty rigorous and there are many different steps in a cycle. He will undergo 6 cycles, which are each about 21 days long. One stage requires him to return to the hospital every 24 hours for each dose, and another requires him to give himself shots and have his blood drawn every other day. I hope that once we get through on cycle we will get the hang of things, and it will become part of our daily routine. It's complicated and overwhelming, but I really feel that we are so blessed to find such a successful study.
I have no idea what the future holds right now. John has to figure out what will happen with work and if he will have to take a leave of absence. If he does, I may have to work part time to supplement his income. The doctors say that people generally feel pretty good and respond well to this treatment and continue to work. The only problem is the visits to the hospital and John has very few sick days left. I know that things will work out and that we will be provided for. The unknown is always scary, but I have to have faith that things will be okay. We're hoping that John will start feeling better after his first treatment, and the doctors are hopeful that he will.
I'll be sure to let you know how things are going. Thanks for all the support you guys have been providing! I really cannot say enough about the kindess, prayers, and support that I have received in these last few weeks.