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.

Friday, July 6, 2012

core drilling

I have had enough of anxiety. Tuesday was my third bone marrow biopsy, but instead of being calm and confident that it was not going to kill me, I was overwhelmed by intense feelings of dread as memories of the last two core drilling expeditions swelled to massive size in my consciousness. I repeatedly re-lived the sensation of a hole being punched into my hip and the gooey insides of my bone being sucked out: the first time as if in a disjointed, confusing dream; the second more akin to having some sort of cybernetic device installed in my hip and thigh. Sedatives added to the surreality and ultimately made the biopsies possible. I am typically quite pain tolerant, but the exception to the rule is nearly any medical procedure I am unable to watch. This makes me a nervous bone marrow biopsy patient and terrible in the dentist chair, but a champion at IVs, shots, stitches, and weird toenail surgery. Tuesday was spent in agonizing panic over the impending hole punch and the subsequent three weeks of a stiff- and painful goose egg on my hip while I waited for five hours in the chemo galley at the blood cancer clinic. Excuse me, in the infusion room at the center for hematological malignancies. My digestive health specialist does not like me to call him my "butt doctor" when I am secretly mad at having my tender parts poked, so I imagine the kind people at CHM have similar sensibilities. There was a bit of confusion as to the actual time of my appointment and whether or not there would also be chemo involved, so there I sat for five hours with my mother as we halfway chatted next to people attached at the PICC line to bags of fluids of all manner of color and viscosity. By the time I was on the table with the NP assuring me he was using the best equipment and had the best technique, my cortisol levels were certainly through the roof and every bit of my self was in full panic mode. Sedation didn't exactly take, and the new-and-improved biopsy method included some sort of drill that made a horrible sound unhelpful to one already inescapably on the edge.  I felt the effects of the morphine and anti-anxiety drug kick in about one half-second before the marrow sucking was complete. Waiting in between administering sedation and beginning the procedure may have been helpful there.

The anxiety needs to be wrangled. The first step is to strive toward serenity and joy in my daily life. While that feels trite to say out loud, I recognize that I cannot heal well or move through discomfort if my emotional state is constantly heightened by conflict, fear, or frustration. I have an easy time finding good or beauty or humor in most situations, and I need to broaden that skill to include recognizing and expanding joyful moments and opportunities for quiet, peaceful thought.