The Whole Story

3 days before the shiz hit the fan.

January 28th was my 36th birthday.  I remember clearly a time when I was sure I wouldn't live to see it.  It was less than a year ago, March-April.  In fact, during that time, I wasn't even confident that I'd live to leave the hospital.  The 19-year-old woman down the hall from me with the same diagnosis had had 4 rounds of induction chemotherapy and never achieved remission.  She died while I was still waiting for the results of my first induction.  The leukemia ward is a craptastic place.  Luckily, the people around me were optimistic, because I was pretty sure it was time to send ol' Jessie to the glue factory.

Birthdays are for self-indulgent retrospection, hence this post.  Some of you know and some of you don't know the events leading up to my AML diagnosis in the first place.  So I thought I'd go ahead and catch you up, and in separate posts, I'll also include the 2 Facebook notes I wrote during my initial chemotherapy treatments.  I'm sitting here in the Infusion Center getting a fill-up on immunoglobulins for the next few hours, doped up on Benadryl, so hey!  I've got the time.  So let's take a walk down memory lane and see how well I tolerate post-traumatic stress.

It all began around Thanksgiving of 2009.  I just started losing my appetite.  No foods looked or sounded good.  Now, this is NOT NORMAL for me.  Normally, I was hungry for whatever, whenever, just put it in front of me so I can get it in my face already, thank you.  Concomitant to the appetite loss, I was losing weight.  Probably about 10 or 15 pounds over the next 2 months.  Sadly, I was too vain to actually worry about it in any major way.  I mean, I actually looked pretty good.  Although I did entertain thoughts of going to a naturopath or something to make sure I was getting enough nutrition (and of course, I never actually went).  In every way, I felt fine.  I was practicing yoga almost daily, teaching up to 5 days a week, working 20 hours a week environmental consulting, and taking care of Luna the rest of the time.  I would occasionally hear a "wooshing" noise in my ears when I was upside down in yoga, or laying in bed, but it wasn't bothersome enough to really care about.

In early February, in the fact the day of the Superbowl that year, Brett and Luna and I were biking around looking for a restaurant where we wouldn't have to watch the Superbowl.  On the bike ride, I noticed my vision in one eye was funny and glimmery.  It didn't go away that day, or the next, so I marched myself down to the eye doctor who said there was nothing wrong.  Perhaps an ocular migraine (and I do have a history of migraines).  2 days later, the glimmering coalesced into a large orange spot in the center of my vision that distorted the shape and color of everything around it.  I went back to the eye doctor, and this time was diagnosed with central cerous retinopathy.  Basically "bubbles" from ruptured vessels filling with fluid on the retina.  I was told it was rare in women (10% of cases, and is usually related to stress or corticosteroid use).  Almost always it affects just one eye.  There was no treatment, but it would go away on its own in about 6 months.  Bleh, but livable. 

Post eye exam freak show

About 2 weeks later, I looked at the green lights on Luna's baby monitor with my good eye one night and the lights were orange.  It was now in the other eye.  I freaked out, wailing at Brett, "I'm going blind!  I have lupus!  I have cancer!  I'm going to lose my eyes!"  Brett remained slightly calmer and suggested I alert the eye doctor.  I called the next morning, and he said, "It's nearly impossible to have this in both eyes at the same time."  So, I found a retinal specialist at UCDMC who confirmed the case to both eyes, but couldn't say much other than, "It's really weird."  At this time, I knew something big was wrong with me; something possibly bigger and more significant than my eyes.  I asked, "Could this be a symptom of something else?  Something systemic?  Like lupus or cancer?"  He looked surprised.  "Well, not the way you're presenting.  You're healthy."  I made an appointment with one more retina doctor, who was equally befuddled.  Looking at the black and white scans of my retinas, which were so perforated with leaks that they looked like a starry sky, he mused, "It almost looks as if your own immune system is attacking you."  He was at a loss for treatment and/or cause, and decided we'd "wait and see."  I put on my new chunky owl-eyed glasses and headed out.

It's not fun to talk about the culminating event that lead me to the hospital on March 14, 2010.  It's embarrassing.  I wish I would have just passed out from anemia or something.  Or that an astute eye doctor finally did a blood test.  But no...it had to be this way: 
Two weeks later, I got sick.  Woke up with a fever and a pain in my -ah- rectum.  I assumed it was some sort of -um- hemorrhoidal situation, although I couldn't see anything.  The fever went down, but the pain continued and intensified despite every home remedy in the book.  There was some -oh, lets say "evidence"- that suggested that there might be an internal abscess that ruptured.  After 4 days of soldiering through some of the worst pain I had felt up until then (except childbirth), a friend suggested I see a doctor.  Well, hey!  There's an idea.  It was, of course, Sunday by then, so we called around and found the least crowded ER.  Happened to be UCDMC, thankfully, and I went right in.  The first team of doctors came into my shower curtain room to tell me that my blood counts were normal and they weren't sure what was wrong yet until they could examine the-uh-area (which they couldn't examine because every time they even breathed on it I screamed and hurled myself 4 feet away).  Just as we were were heaving a sigh of relief and returning to my Sookie Stackhouse novel (which Brett had to read to me since I couldn't see), a lone resident came in, crouched down next to me, and told me a hemaoncologist had looked at my blood on a smear and seen a high percentage of leukemia blasts, and that I had leukemia.  No "maybe" or "we'd like to test you for..." just, "You have leukemia."  It was an acute (fast acting) case, so not only would I not be leaving the hospital today, I would also be heading straight up to the oncology floor to start chemotherapy ASAP.

The rest of the next couple days is bits and pieces and huge blanks spaces in my memory.  Because of my eye problems, they checked my cerebral spinal fluid through a lumbar puncture.  Leukemia there.  Because of the rectal pain, an MRI to check my lower organs.  Leukemia had infiltrated and inflamed everything in my lower pelvis.  My cytogenetics revealed 2 mutations in the leukemic cells:  Trisomy +8, and MLL amplification, both of which carried a not-so-good prognosis.  They were already talking about how chemo alone would probably keep me in remission for less than a year at best; I would need a stem cell transplant.  I was terrified, even though I hardly knew what one was.

The first stay in the hospital lasted 30 days, to receive and recover from extremely high doses of 5 different types of chemotherapy.  There was an IV catheter installation that went amiss and atrial fibrulations and heart monitors and external pacemakers just in case.  There were bone marrow biopsies and chemo drips and painkillers and anti-anxiety meds and headaches from repeated lumbar punctures.  Thankfully, I achieved remission in about 14 days.  No leukemia in my cerebral spinal fluid, inflammation gone from my organs, complete remission.  Also, my eyes mostly healed (I can see fine, and my vision tests perfect, but there is a little distortion).  To make sure no interlopers would spring up, I had one consolidation treatment a month for the next 4 months (which involved 5-day hospital stays to receive high doses of 1 type of chemo), which was the maximum people have for AML.  I was also regularly receiving chemo into my cerebral spinal fluid, first through my spine, then into my shiny new Ommaya reservoir installed in my head.  Besides the chemo, I had many additional hospitalizations due to fevers I'd get when my blood counts went down.  In the meanwhile, we weren't having much luck finding a stem cell donor.

So I think that brings us up to speed.  I'll post my notes from the 5 months of chemo soon.  There are only 2 of them.  And you think this blog is lackadaisical.  See how bad I used to be?!  Thanks for following me on this crazy journey.

Post chemo, going home

Oh yeah,
For those who follow them, my counts are good this week.  Everything is up, although slightly.  WBC 3.6, hemoglobin 12.6, hematocrit 36.4 (these 2 are actually in the low end of the normal range now), platelets 133 (also low end of normal) and neutrophils 2480.  Tomorrow, I get yet another Ommaya injection.  Yay.

love jess