Thursday, January 14, 2016

I'm not dead!

So, despite my best intentions, last year went pear-shaped. Had to deal with my health improving with my weight loss and then it doing a 180 when my leukemia med stopped working. These are targeted therapies, but still rough on the body. I had been at a half-dose of the second-newest med for a couple years. And then, pow, bad cells popping back up.

This month marks 10 years since I found out I had CML. On the one hand, yay because I have now out-lived the expected lifetime of CML patients before the first targeted therapy, Gleevec, was developed. But, *sigh* for 10 years of side effects, switching and adjusting to new meds, bone marrow biopsies, etc.

So, my most recent stopped working last year. I have been on all but one of the targeted therapies, switching them when the side effects became too much. Or landed me in the hospital. This was the first time the issue was it not keeping the defective cells suppressed. And then I got stupid. My oncologist wanted me to go back to the original dosage of this med. Stupid me did so without thinking and I proceeded to burn through the last of my vacation and paid sick time. Because it is a day by day thing. One day you can ignore the side effects, the nest you can't get out of bed. After a couple weeks, though, the abdominal pain that made us go to the lower dose originally became constant and so I stopped that med.

Now, the question was what to do. Had to take something. Couldn't really take a medication break as my Philadelphia chromosome count was already increasing (as that goes up, the CML is getting stronger and my body would start making too many wbcs which would ultimately make me sick again). The newest medication had a 10 percent rate of death in its trials. Um, no thank you. The last time I tried Gleevec, I couldn't get out of bed within about 4 months of starting it. Sprycel I didn't really want to try again since the fun side effect there was bilateral pleural effusion and pneumonia. That left Tasigna. Was on that one for a year after i had recovered from the Sprycel fun. Ended up in the hospital with pancreatitis. Sad thing is that this was the best option.

This time, I got smart. I planned a medical leave ahead of time to start and adjust. So, I was off for 6 weeks last June/July to get things back on track. Dr and I agreed to try a half dose and monitor my pancreatic enzymes to hopefully catch it early if things start to go bad. The fun thing is that I got to have issues this time that I didn't have before. Is it because I'm a few years older? Because I'm 80 pounds lighter? Who knows. But, hello insomnia at night and fatigue during the day. So, I take 2 separate sleeping meds at night and a strong dose of Concerta during the day

But, things are going okay. December and January have been a bit rough in terms of colds and the flu and the tasigna sometimes gives me a heck of a headache, but I'm managing.

Now we get to the positives. Making some goals for this year. I want to create more, get my computer working, actually get this blog going with my jewelry and my thoughts on beady subjects. I work in the actuarial field. Before I got sick, I was having success with the exams to become credentialed. Had to stop after getting sick as those exams take a ton of prep time and I just didn't have the energy anymore. If I can get to the point with this med that I was at with the prior one, I plan to pursue the two exams needed to become an Enrolled Actuary. It's not what I had planned back in the day, but it is something that would be useful in my current job and it will be something to help soothe the hurt and frustration that I have felt since turning 40 a year ago and hitting this 10 year CML anniversary. It's been rough looking back on my life, not being remotely where I thought I would be, and knowing that the big goals I had are just never going to be possible.

So, here's to a new year. To focusing on attainable goals and celebrating them. And, finally, here's to 10 years with cancer and making it another 10 years.


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