Like winning the lottery of Cancers
I was diagnosed in January 2011 while at the ER for an unrelated issue. I was 45 and newly engaged, I was shocked to hear I had Leukemia and was scared of what was to come. I was admitted to the hospital and started on IV chemo, remained there for 5 days before being discharged and started on Gleevec. I remember wishing I had someone to talk to, someone who had CML and who would understand what I was feeling. I recall the oncologist that I saw in the hospital telling me that having CML was like winning the Cancer lottery because there was a new drug that kept this disease in check and enabled most patients taking it to live a pretty normal life. At that time, it was very hard to think of my diagnosis as anything but awful.
Gleevec did come with some side effects at least while my body was adjusting to it, nausea/vomiting, bone pain so bad that there were days I just wanted to stay in bed, something I could not do as I was working full-time, I had too – I needed to make sure my health insurance was in place to pay for the Gleevec. My worst side effect was feeling cold, not the cold you feel when walking outside on a winter day, but a cold that came from the inside, a cold that made me feel like my bones were made of ice- the only thing that warmed me up was taking hot baths, so hot that I was red as a lobster when I got out, but I did not care because I felt warm!
My body did adjust for the most part to taking Gleevec, with the side effects gradually decreasing with some less bothersome ones taking their place, leg cramps, adema, and my once olive skin tone becoming very pale (thankful for self-tanning lotions!)
My life went back to being pretty normal, with my monthly lad work to check my numbers , which gradually went to every other month, then every 3 months and then to every 6 months. Until I decided that I was well enough to not take my Gleevec every day, I mean my numbers were staying at a decent level and I felt good. I started taking it every other day, and my numbers creeped up a bit, but nothing that seemed worrysome, then they started to increase pretty substantially, and my oncologist asked if there had been any chages in how I take my medication, and I told her that I was skipping some doses- When asked why, the only answer I really had was ” I just wanted to have days where I felt like the old me, without the reminder of the fact that I did have leaukemia, and that I felt ok” … She stressed that many patients who adjust their dosage or stop taking it completely, do have their numbers increase AND that many times when restarting Gleevec, it no longer works to bring their numbers down.
It was a wake-up call to me, I needed to stop being stupid and realize how fortunate I am that there is a drug that if I take it daily, will keep my CML in check and allow me to have a pretty normal life- I was blessed that there was a drug that was able to do this and thankful to those who worked hard to develop it.
I am now 12 years into my CML ( or as my family calls it “Little L”) and i have to say that I am thankful for every day, are there still some bad days, absolutely, but the fact that most days are good days, normal days and that looking at me, you would not know that I have any form of cancer, as my current oncologist told me recently, ” I do not look like a patient” and that I am a testimonial that this drug works!.
The diagnosis sucks, and that will never change, we all have someone in our lives who has battled cancer, many of who have lost that battle. CML is manageable, seek alternative therapies such as Acupuncture, salt caves, and infrared saunas- all of these things really do help and talk to others who are CML warriors, talk to those newly diagnosed and let them ask questions and hopefully make their journey a bit easier- And enjoy every day, after all CML does seem to the like winning the cancer lottery.
Like winning the lottery of Cancers
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