Relapse *Warning - Contains Onions*

My leukemia has relapsed.  The physicians caught it three weeks ago.  I wasn't very surprised by the news, I'd been in a constant state of fatigue for at least six weeks.  Fatigue has been my only major symptom before being told of my leukemia each time.

The week after diagnosis was spent performing tests to verify the state of my leukemia.  What it came down to was fifty percent bone marrow density and eighty six percent leukemia.  That means that since my bone marrow transplant I've recovered half my bone marrow and as of two weeks ago eighty six percent of that marrow consisted of leukemic cells.  The fancy twist to this relapse: I now have two leukemias.  I have immature T cell ALL, as I have for 20 months, and I have AML, myeloid leukemia.  The AML is likely due to the radiation I received prior to my BMT.

Emily and I consulted with the physicians regarding options, discussed them privately, consulted further and finally, after several days, decided on a course that we felt would likely provide us with the best outcome we could reasonably hope for.

The options were not great.  The options were heartbreaking.  The options forced us to make a decision no one should ever have to make.  We're getting used to making such decisions.

Option 1: Also known as the hardcore option, consists of chemo, chemo, and another bone marrow transplant.  We'd be banking on the graft versus leukemia effect, apparently my leukemia is strong against radiation and chemo, GVL (graft versus leukemia) is the only possible hope for long term survival.  The problem with this option is the very low probability of a successful outcome; it is calculated roughly .4 *.4 *.4 = 6%.  In theory you have something like a 3-6% chance of long term survival.  You have a 40% chance to survive the necessary chemo attempts and achieve remission, a 40% chance to survive the BMT process, a 40% chance of contracting GVHD,  and an unknown % chance of also picking up GVL.  Only one study has been published regarding people in the situation I'm in now.  It was published this month, the data has been collected for over 3 years and there were 31 patients observed.  These patients opted for the second bone marrow transplant procedure.  1 year after the transplant was completed 23 percent were still alive.  3 years after the procedure 11 percent, 3 patients, were still alive.  None have achieved long term survivor status, that takes 5 years.  The physician I spoke with here doesn't believe any will make the 5 year mark, possibly 1.  Option 1 offers a minimum of 10 months combined hospital and recovery time, 1 year of immune suppression, and because a successful outcome requires GVL it also requires GVHD which can take years before you find a balance with GVHD that allows for an acceptable quality of life.  Option 1 is a near guarantee that you will suffer all your remaining days and death is very likely to come for you inside the first year.

Option 2: Palliative chemo with the intention of creating a balance between length and quality of life.  With this course you'd be looking at the first forty percent gateway again because you'd do a round of intense chemo up front which could well lead to death via complications.  If the chemo goes well we would then begin a long term regimen of another weaker chemo that should allow for good quality of life.  It won't stop the cancer but it will slow it.  There may be other decision points in the future where I could do full rounds of chemo to try and live a bit longer.  This option could kill me tomorrow, carry me for 7 months, or it could lead me along to a miracle.  The doctors anticipate 7 months.

Option 3: Hospice.  I would die before 2012 was out.  How's that for a Merry Christmas?

I chose option 2.  I started the least pleasant round of chemo two weeks ago.  Clofarabine was recommended.  I'm hitting the low point of the treatment right now.  I was admitted to the hospital on the third and returned home on the eighth of December having received 5 treatments with Clofarabine.  I spent a week at home while shuttling daily for blood tests and transfusions.  Yesterday I was re-admitted to the hospital, which is where I'm writing from right now, because they cultured bacteria in my blood; I have sepsis, it is a gram positive bacilli.  They may need to remove my central line and replace it because of the infection, we'll know in a day or two.  If all goes well from here I'll be home before the weekend.

Emily and I have had various unpleasant but necessary conversations.  She generally doesn't like talking to people about the details of my condition.  As you can imagine, it's very difficult for her.  She also worries about our boys becoming aware of all the details any sooner than they need to.  Writing this post makes that danger a bit more real.  I'd appreciate if you didn't discuss any of the details around my boys or around children who interact with my boys.

Now, more than ever, I'm enjoying life.  I still have hope.  I hope for something, miraculous or mundane, to come and fix me so that I can spend the next 50 years sharing my life with loved ones.  There is no belief in a long life for Ryan, just a hope.  I believe I will go as the statistics suggest.

This situation is tragic, I can't imagine anything worse than losing Emily.  As it stands she'll have to live through the worst thing I can imagine.  I can't afford to spend the rest of my life acknowledging that fact.  The tragedy warrants grief, more at certain times.  The only reasonable course for me is to acknowledge it as often as Emily needs me to; I try to spend the rest of my time thinking of and doing fun and productive projects.

I meant to post this update weeks ago.  The first week we didn't have answers, only questions.  For the last two weeks I've been so tired that I couldn't write.  Today, thanks to a fentanyl patch and a free day at the hospital, I've felt well enough to get this much of a post written.  There are plenty of questions you may have, feel free to ask me anything.  My thinking is mildly impaired because of the narcotics working to dull the chemo pain.

You are all wonderful.  Thank you for being my friends, supporting me, following my story, and caring about my family.  The support networks that Emily has are my greatest comfort when I imagine her making her way in this life without her partner.  All of her family and my family, all of my friends, all of our shared friends, the girls in her book club, and her friends and co-workers at OrangeSoda, I'm counting on you to keep supporting her as you have so that she can carry on with a wonderful life when I'm not there to be her support.

Some time soon I will write again, probably once I'm out of the hospital.  Until then, as you were.

Jonas and Ryan, 2002 was a crazy year.  I have no idea why Jo looks terrified.  We were happy to have him home alive: