Tuesday, July 10, 2012

interesting turn of events

Chemo has been cancelled.

Vidaza has been cancelled, at least. I am under the impression there is some type of chemotherapy right before the marrow transplant, but there will be no long-term treatment. There will not be six months to a year of one-week-a-month infusions and there will be no PICC line. There will, however, still be a bone marrow transplant. I am sorry for all the times I panicked or pouted about having any of my three marrow biopsies because someone out there has volunteered to go under anesthesia and have their hip tapped like a sapsucker taps a tree. Six extractions in one go certainly must make the donor feel pretty much kicked in the hip by a horse. I will now stop grumbling about my hip still being stiff from last week.

My rational thinking tells me that it is good news that we are skipping chemotherapy. Marrow transplants apparently tend to yield better (less complicated or lethal) results in patients who have not had a lot of treatment or blood transfusions. Nonetheless, I am quite concerned with MRSA or graft-vs-host getting the best of me before I hit the 100-day benchmark and -- regardless of the cliché in phrasing -- I am too young to die. I saw the chemo months as my ticket to a little more time before having to truly stare down mortality, but Medicaid came through and there is now no financially- or medically justifiable reason to wait.

The social worker dragged a marrow transplant survivor into the exam room today. She wasn't much older than me and remarked that there aren't a lot of young people in the hematological malignancy clinic. She had better things to do than stand around while I said nothing of much consequence, but came back a few minutes later to jot down "Oncology Youth Network" on a piece of paper she handed me with a suggestion I check them out. They seem to be some sort of meet-up group or support network for cancer survivors in their teens and twenties. I'm almost 30 and have MDS, which is almost-but-not-really cancer. If I go straight to bone marrow transplant, never have chemo, and never get to the point where my disease flips the switch and becomes cancer, I don't know if I count as a cancer patient or later a cancer survivor. Still, it's nice to think about a group of people who understand the process, who are not over 60. The woman I met today mentioned how alone and "other" you start to feel the deeper you get into the treatment process. MDS makes me feel isolated from even the cancer patient/survivor community. I'm too young to have any peers nearby who also have this purgatory diagnosis.

The calendar now looks a bit hazy. I'll meet with the transplant doctor in a week or two, my younger brother will be typed and screened as a donor, and if he is not a good match a donor from the registry will be tracked down. If my brother is a match, I will have to make him some delicious pancakes to thank him for the weeks of awful hip pain he will have to endure. Provided I make it through my first year with no problems, I will make him the best pancakes every year on the anniversary of my transplant because I speak love through gifts and food. Following two to four weeks in the isolation unit, I will spend 100 days closely watching my own health while the marrow starts to make blood for me and I visit the doctor multiple times a week for maintenance. If I make it those first hundred days without serious graft-v-host or infection problems, I probably won't die from either. If I make it a full year, I will probably live a pretty normal life. Here's to hoping.

1 comment:

  1. Just to play devil's advocate to the voice that says you don't belong, didn't you survive stage 1 cancer with that radiation surgery? That alone qualifies you to join that group. Granted, it's not the most immediate concern, but for better or for worse, you are qualified to join that group. No need to feel like an outsider, or put obstacles in your own way. Although, having said that, your feelings are certainly legit. It must feel isolating to talk to your friends about it, because none of us can really quite understand what your'e going through or quite what to say that isn't overly sunny or overly downer. And while I think we all would like it if you kept reaching out to your friends to help process everything or just get distracted for a bit, the people at that support group are probably going to have useful things to say, or at the very least will understand the most what you are going through. Staring down your own mortality can't be fun and your friends are probably at a little bit of a loss at what to say or how to help, so please prioritize yourself and do what you have to do to stay sane and motivated. Here's to hoping indeed, let me know if I can help.