Yeah, F*ck February!

I took a quick glance over my old posts and saw the title “It’s really February?” I remember writing that and being amazed that my body was able to survive through treatment as long as it had… so… now we all know how I feel about that.

I’ve lost anything approaching continuity at this point but I’m not sure the tiny details are all that important anyway. I’ll have to write a full update in post-sized chunks so bear with me. Last time I wrote I had just relapsed (again) and returned to the hospital for in-patient treatment. The plan was to tolerate about a month of chemotherapy (high-dose Methotrexate) and when I achieved remission again we would perform a DLI (Donor Lymphocyte Infusion) to give the transplant a boost. Hopefully that would be enough to help my new immune system take hold and kill the cancer.

Before doing the DLI my doctors took a bone marrow biopsy to verify I was in remission and eligible for the procedure. I was feeling well, looked healthy, my blood counts were in a good place (for a terminal leukemia patient) and my blood showed no presence of blasts (cancer cells). Instead of confirming that I was in remission, the biopsy showed approximately a 90% cancer presence in my marrow. The treatment had barely affected the cancer if at all.

Close to Christmas 2010 and my one year anniversary of diagnosis – my doctors told me I had at best a month to live. Because the chemotherapy was no longer effective, I couldn’t achieve remission and the DLI was not an option. My doctors directed me to an associate at Dana Farber here in Boston who was about to begin enrolling ALL patients in a non-FDA approved drug study. They wanted patients who hadn’t had success with the top 4 most used Tyrosine-Kinase Inhibitors and were in ‘blast-crisis’ – a perfect description of me. They also advised me to look into hospice care.

It was pretty obvious that this drug trial was an extreme longshot. The drug wasn’t FDA approved for human use yet and had only gone through a single Phase 1 study where all the ALL patients died within 6 months. Sweet. Keep in mind I found that article on my own, not exactly encouraging.

At this point my life was comprised entirely of cancer or cancer treatment – part of me was relieved to have an end in sight. Granted, not the end I was shooting for but I learned a while ago that it just wasn’t always up to me. My family was pushing for the drug trial but I just wanted to go home, eat my weight in Oxycontin and let the cancer kill me. At least there wouldn’t be all the needles, biopsies, drugs, vital checks, blah blah blah blah.

Up until this point I’d had a really hard time including my friends in what was happening to me. I’m sure to them it seemed like sometimes I’d call and things would be going great then next time we talked I was about to die again. When it finally came time to tell everyone I only had a few weeks left, It was probably harder than telling everyone when I was diagnosed in the first place. I didn’t want everyone to come running home just to see me die. But what kind of asshole just dies and doesn’t even let anybody know first, right?

The day I found out I barely even talked to my family. One of the social workers did a good job of stealthily making sure my family would all be at the hospital when they told me I was going to die. For most of the next two days I didn’t tell anyone or spend much time talking about it. When I was diagnosed it simply gave a name to somehing that I already knew was seriously wrong – one second I was just oddly ill and the next I had leukemia. But when you feel healthier than you have in a long time and someone tells you you’re actually about to die it takes a while to sink in.

The timing meant that I’d most likely be dead before Christmas so I found that was the easiest way to explain things. Medically it really wasn’t any more complicated than, “chemo doesn’t work anymore, cancer will consume me,” and I bet I came off as pretty cold to most people. I just didn’t have the energy to spend on it at that point. Fighting cancer when you still think you have a chance is like some kind of sustained adrenaline release that keeps on giving every time the disease slaps you in the face with something new. Brain nodules? Fine, nuke my head. Another month of chemo? Sure, I’ve done it 12 times already. Once you know you’re going to lose, that energy just disappears and you feel the entirety of what you’ve been through hit you all at once.

It sucked, but for anybody keeping score my life had become some sort of cosmic “kick Austin in the dick” contest for some Gods with a mean sense of humor. I was mostly just concerned with how I would die. Ever think of that? I didn’t want one of those gasping-for-air deaths. It seemed the consensus in the killing-yourself community was sleeping pills and damn did I have plenty of those. It was just a matter of time until I lost any quality of life and wouldn’t want to go on.

– Austin

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