Hello everyone,
I am glad to have found this site. It has been extremely cathartic to read a bit from others on their situations. It's kind of strange how it's hard to connect to even your best friend on something like this, but just hearing from strangers who can actually sympathize make things so much easier.
A little bit of background. My name is Taylor and I'm 24. I was diagnosed with CML on Jan 31st, 2011. I graduated from the University of Oklahoma in 2009 with a degree in Linguistics, and I took a year or so off from school to decide what I wanted to do. I wasn't sure if I wanted to go to grad school, or maybe teach English in Japan (I applied for a program but didn't get in) or what.
Eventually I began getting blind spots in my eyes. My first one was in my right eye in June 2010, and a retina specialist said he didn't know why I got it but that it would heal. It did, and a week later I went on a month-long trip to Europe and backpacked with a 25 lbs backpack with no problem, although I came back with a cold that was hard to get over, and I was noticing that I was getting more and more colds. I also lost a lot of weight that I thought was due to not eating McDonald's and walking everywhere, but it became strange that I never put it back on.
I later (September-January) began to get a lot in my left eye, and in January I got a HUGE one in my right eye. That enough to get me to borrow some money from my grandma to go see another ophthalmologist who knew something was up and sent me to get a blood count. He called me later and told me I had a form of leukemia.
In the meantime since my first blind spot in June, I had also noticed a painless lump in my abdomen that developed in December, but didn't think anything of it. "It changes size so it's not cancer," I told my girlfriend. I was also getting frequent, heavy nose bleeds if I rubbed my nose or picked it, but I thought it was the try winter air.
I rushed to the ER and was pretty confused...I had just gone in to get my eyes checked, that was all! But they did more tests and told me my count was 230,000, and it was maybe something called "CML". My blast counts in my blood were extremely low (zero for all intents and purposes) I was immediately relieved, at least given the circumstances, since I knew about Gleevec, etc. from Dr. Mukherjee's book The Emperor of All Maladies that I had just read in December—weird timing. So, they put a catheter in my neck, did a CT scan to check my spleen, and rushed me up to the onc floor to do leukopheresis. I was there for about a week, doing my treatments, including hydrea, and waiting for my marrow biopsy results—we had that huge storm in Oklahoma so it was taking a long time.
It's pretty weird in hindsight that I didn't think anything of changes in my life. Three big cups a coffee a day, long nights of sleep, and needing a daily nap on my girlfriend's couch while she was doing something else didn't seem like a big deal to me. I just thought I wasn't sleeping well at night. I also kept waking up sweaty or with soaked clothes, but I thought I was just getting hot in my sleep.
Anyway, to keep myself from writing a novel, I'm on Tasigna, 150x2 twice-daily. I was released on February 8th, 2011, and started my new job as a proposal writer for a big company here in Tulsa on February 10th. At least now I'll have great insurance! I'm also engaged as of March 20th and my fiancée and I will be married in November.
My counts are doing great, basically in the 5,500 ballpark for WBCs. I'm responding pretty well to the Tasigna, just some joint paint most of the time, and the constipation. I think my hair growth is starting to slow a big, because I can go an extra day or so without shaving, and my scalp looks thinner. I've also developed anxiety the last week or so, including some bad attacks, but that could just be everything all settling in—typically I'm the most easygoing, phlegmatic person you could meet. I've also been super paranoid about the QT thing, even though I always have good results on the EKG. But now that I know more what the QT thing is, I'm not as worried. I have awesome energy now, until about bedtime at 10:30PM, then I hit a wall, which is fine by me.
Anyway, it's good to meet you all and I'm really glad support is here. I hope I can be of some support too!
Taylor
