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.

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.

big ol' gif round-up

Just when I think I'm making good headway on getting on state health insurance:

Those days I am too tired to do anything, but have just enough energy to be aware of the nothing being done:

Finding out I have been simultaneously approved for and denied SSI:

When my darling fiancé makes jokes to lighten the mood at oncology appointments:

Waking up in recovery after surgery:

My doctor tells me I'm having another marrow biopsy/an intravenous catheter/any sort of rectal exam or imaging:

Walking back to an exam room, nurses ask me how I am doing:

...but every third or fourth visit, once the exam room door is shut:

The days I get to go out and see my friends, even

...feels like

pictorial happy

• Adventures with friends
• Oregon coast
• Make'sy-create'sy
• Dog friends and respect for their anonymity
• Sea birds who mate for life
• Self amusement
• Living a beautiful city
• Escape to the fairy tale land that surrounds my mom's house

medicine brain

When all this is over and I'm no longer exhausted from anemia; infection; chemo; pain; and lack of sleep, and am finally able to get through a day without any thought to pain management, I am going to be so very awake. I hope I can find a way to make good use of all that energy and clarity. I am excited for that day I am out of this constant fog because it is going to taste exactly like sitting on the dock at camp late at night when it is just cool enough for a hoodie and you fill your lungs as far as they can take it just to have some of that magic in you. I try to simulate the feeling at the beach or up at my folks' place in the woods, but chemicals and fatigue keep turning cool air off the lake into warm air just before a rain.

forget brave

There is a collective agreement within my support network that I am allowed to feel puny and scared. I appreciate this sentiment because I have no choice in the matter and the experience is surreal.

I am used to feeling tough. Brazen, strong and independent. Maybe those moments still come but they seem muted somehow, like voices on the other side of the door or breathing through wet wool. I am not used to feeling small and nervous and bug-eyed. I have been scared before, but in time it always turned to simmering indignation that cooled or became a head of steam. Now I exist in an ever-present state of uncertainty and fear that becomes a sideways response to, "how are you? You look great!": Thank you, but I'm feeling kind of tired and puny lately.

I am very glad my people let me feel that way and do the brave stuff for me.

this day here

I feel so small today. Tiny bones and tired muscles and tissue-paper lungs. Walking from the train with my lunch curled up in my arm I was a wisp trying to be large enough to breathe. So far this week I have been filled to the brim via most of my orifices with barium or contrast fluid, sacrificed a bit of blood to lab vampires, had my guts and lungs viewed through various magic mirrors, had so very many strangers examine/poke/assault my private areas, and watched "Law & Order" and "Friends" re-runs for 5 hours while curled in the fetal position on an ER bed. It is Wednesday. Tomorrow is pre-op for butt surgery next Tuesday and then I refuse to do anything medical but take my antibiotics all weekend.

I used to be tired a lot. I worked hard, so it seemed reasonable to be immobile all evening after work and through most of the weekend. I fell victim to infection easily my whole life, and that often contributed to my fatigue. I did so much to get tired, though. Work was eight-to-ten hours a day, I was learning to surf, I walked everywhere. Now I wake up tired. Surgery was almost seven months ago, and there is just no bouncing back. The trauma of it has left cascading maladies in its wake and shone a light on Myelodysplastic Syndrome I didn't even know I had. My time is now marked by doctor visits and lab tests and meetings where I beg Social Security and DHS to help me keep my head above water just enough to get through my impending bone marrow transplant. Even without influenza for most of May or some mystery mass that make bowel evacuation about as fun as sitting on a wrought iron fencepost, I would be exhausted from my full-time job as an almost-cancer patient. I haven't even started chemo yet.

Today I went to DHS's Aging & Disability office to interview for something called presumptive Medicaid. Bronchitis from the flu made me winded and gave me a breathy, Rory Gilmore voice that I hope aided my cause. How can anyone deny medical insurance to a 3/4-sized Rory Gilmore who needs a bone marrow transplant? On my way to the MAX to go home, I picked up some tikka masala and a soda from my favorite food cart and I felt as though I might twirl away, into the air like a puff of smoke while I waited for my order. So small. So broken. So at the mercy of kind, research university doctors and faceless, judging state bureaucrats. I signed over my life laid bare to the bureaucrats today in hopes they would understand this uncommon diagnosis of mine and know that if I could work and pay for my own insurance I surely would. I'll work after my transplant, go to school and be some sort of person who makes enough money to pay for her own- and some random stranger's insurance if they will just help me pay for that new bone marrow that's not covered by my OHSU discount. My lunch was ten times my imagined size, and as I walked home from the train strangers in the street saw a folded newspaper, a can of orange Fanta, and a large container of Indian food being escorted into my building by a non-corporeal consciousness.