The next logical step in this blogging thing would probably be to explain how I got here (not in a birds-and-the-bees kind of way... a clinical, oncology sort of way). So, here we go. (This is the insanely short version.)
In December 2008, I was diagnosed with a kind of cancer called Chronic Myeloid Leukemia. It was caught by a blood test ordered by my allergist after she couldn't figure out why I had a recurring rash on my face. Remind me to tell you the story of my diagnosis someday. It's a real hoot. NOT.
CML, as it will henceforth be known, is typically found in 55 year old (and up) MEN. Right. As terrifying as a diagnosis of leukemia was, the reassurance came in the discussion of treatment. CML is treated with an oral chemotherapy (targeted therapy to be exact) agent called Gleevec. It comes in pill form and I started taking it within four days of diagnosis. Gleevec was both a magic pill (and a BLESSING) and a huge drag. I started taking it in the hospital and it worked immediately while also making me yak my brains out (hey, this is a cancer blog, TMI is assumed). Gleevec has only been on the market for treatment of CML for about ten years, which makes it that much more amazing. Before that time, patients endured a variety of nasty therapies, bone marrow transplant (the only curative measure) included. Gleevec was the first treatment to work on the cells carrying the Philadelphia Chromosome (CML causing cells) without debilitating the patient. G also took CML from the realm of "you are very fucked if you get this" cancer to almost chronic disease.
Basically, leukemia causes an elevated white blood cell count and Gleevec began lowering mine within the first 48 hours and I reached 'normal' levels within 6 weeks. I spent about 11 months on Gleevec and during that time I was pulled off of the drug for a variety of reasons, nausea, thrombocytopenia, or low platelet counts, being the most nagging of the reasons. More on those issues later.
In November of 2009, I underwent my second bone marrow biopsy (the first was done a few days after my initial diagnosis to confirm CML) which revealed some inconsistencies in my bone marrow. Basically, CML is caused by a gene called the Philadelphia Chromosome (ironic, eh?), or Ph+, and when they do bone marrow biopsies, my doctors are able to track my disease based on the presence of this chromosome. Two of the tests for the Ph chromosome came out with wildly different results. Based on these findings, I was sent to a doctor at MD Anderson Cancer Clinic in Houston, TX. After four months of what can only be described as an insurance company clusterfuck (whew, I like that word. sorry, mom), we made it down to Houston with my amazing and unbelievably supportive parents.
To back track, after that biopsy in November, I was switched to a drug called Tasigna because my doctor felt that G had stopped (or never) really worked. if Gleevec was a drag, Tasigna was, well, a really big fucking drag. Within four days I was curled up in a ball in bed with the worst muscle pain I've ever felt, my first migraine (yippy!) and the spins. Cool. Oh, did I mention the rash that appeared all over my face and body? Yep, it looked like I was covered in little hives. THEN Tasigna caused my platelets (the little sticky cells in your blood that keep you from bleeding to death) to crash to dangerouly low levels. Just like G, I was pulled off of the drug but this time spent more time off of Tasigna than on it.
At any rate, the doctor that I was sent to see in Houston conducted the clinical trials for Tasigna. It was suggested that he would be able to figure out the inconsistencies in my bone marrow testing and recommend what treatment I should continue on, bone marrow transplant being a distinct option for a variety of reasons. After undergoing ANOTHER bone marrow biopsy in Houston, it was determined that I need to have an Allogenic Stem Cell (bone marrow) transplant "ASAP". Yeah, he really said ASAP.
In a BMT (bone marrow transplant, are you sick of acronyms yet?), you receive donated marrow from a 'matched' donor, usually a sibling, which repopulates your bones. The patient's marrow is first killed by high dose chemotherapy and sometimes radiation and then the new, donated marrow is given in the form of a transfusion. The smart little bone marrow, also known as stem, cells (not the super controversial stem cells), find their way to your hollow bones (he, he:)) and grow you new, healthy marrow. Pretty flipping amazing if you ask me.
This is where we are. My siblings have been tested (and man are they cool for agreeing to do this for me) and in a few days time, my husband and my dad and I will be traveling back to Houston to work out more details about the transplant and find out if the little bro or little sis are a match. This is super scary but I'm also very hopeful. I've been told that I am the "ideal" candidate for this procedure based on my age and general health (daily handstands will do that). Oh, more on those handstands later.
That is the quick and dirty version of why I'm here and why you're here and why the next year of my life is going to be really effing interesting. Please excuse the ridiculously long post. I just scrolled up the page and had a thought that anyone who would read all of that must really like me, so, thanks!
I'll try to update this thing as often as possible and maybe even toss a few pictures up as well. Who knows! Thanks for reading!