**Originally Posted on Dec 20, 2013
***UPDATED on Dec 7, 2017
Dec 20, 2013: After countless phone calls, texts, and emails, I knew I should fill people in on my health status soon...but once people started asking my sister, Tiff, "how long does she have?", I figured I probably shouldn't wait any longer, hah. But if we're going to do this right, we should start at the very beginning...(if you prefer to skip the boring, medical, explanation, I encourage you to skip to #4 and/or watch the video) Most people who know I have cancer, don't know much beyond that, so let me give you a "quick" explanation of my health situation, in the briefest way possible, while still be thorough:
1. What is it?
On December 1, 2006, I was diagnosed with CML, Chronic Myeloid Leukemia, cancer of the bone marrow and blood stream. There are four kinds of Leukemias, and CML makes up about 10% of those diagnosed. Oddly, the average age of those diagnosed with CML is 60+, so it was very rare to be diagnosed at 16. I've always had an old soul.... Anyway, it all get's started when a piece of chromosome 9 and 22 break off and form a mutated chromosome called the Philadelphia Chromosome. 'Ol Philly causes uncontrolled growth of Leukemic white blood cells which build up in the marrow and blood stream and leave no room for normal, infection fighting, white blood cells. Eventually, the Leukemic cells invade the vital organs of the body and stop them from working properly, etc. For reference, a healthy, "normal", white blood cell count is 4,500-10,000 per microliter. When I was diagnosed, I had over 140,000 per microliter. If anyone spent time with me in the fall of 2006, prior to diagnosis, this explains the excruciating bone pain I was having - there just wasn't enough room in my bones!
2. Treatment
Immediately following diagnosis, I was told I would absolutely need a bone marrow transplant in order to have a chance at "survival". This is a very dangerous procedure, and if you survive the initial chemo, radiation, and transplantation, there's still a 20% chance you'll be dead within 5 years. Being a Budweiser counisseur, not making it to my 21st birthday just wasn't an option, so transplant was going to have to wait. Instead, we tried a drug called GLEEVEC, which was considered experimental at the time (now the mainstream). This is an "oral chemo" that inhibits the production of the Philadelphia chromosome, and is/was extremely cutting edge as far as cancer treatments. Gleevec has since become the first line treatment for CML. Like any chemo or cancer treatment, the drug does come with a plethora of daily side affects including: nausea, fatigue, bone pain, water retention, damage to the liver, kidneys, and heart, among a few others - consider like a mild hangover every day. With that said, I consider it a small price to pay. One major downfall of Gleevec is that, becuase it is so new, long term affects are unknown. However, we do know that most people become resistant to the drug at some point, as their cancer mutates to retaliate against it and Gleevec is no longer effective. Luckily, there are now 2nd generation drugs developed from Gleevec technology which can also be used to treat CML in certain cases.
3. Remission
While the cancer can become "undetectable", leukemic cells are still present in the blood stream and CML'ers on Gleevec can never technically be in remission. I had to fight to get where I am today and to get my cancer counts as low as they are, but for the most part, for the past 7 years my health has been stable and my quality of life on Gleevec has been better than I could ever ask for...
3.5. Which brings us to today
I go to the doctor every three months to monitor my leukemia counts and make sure they're stable. Six months ago, my counts began to creep up...no biggie. Then at my next appointment they went up again, and again two weeks later. Biggie. The conclusion: it's likely the cells have mutated to become resistant to Gleevec. So, as many of you know, I went in for a bone marrow biopsy to have a closer look and have also sent out some genetic testing to see whether or not my cells have mutated and most importantly, which mutation has occurred. This is very important because of the known mutations, there are two of which are not only resistant to Gleevec, but resistant to all of the current treatment options (besides transplantation). So that's where we're at...waiting on mutation results.
4. Let's cut to the chase
- am I dying or what? Nope. Not today (not of CML anyway). Besides some annoying side affects, I feel good. I am VERY lucky to have a type of cancer with multiple treatment options. While my situation is serious and needs to treated as so, I've never found any good in dwelling on things you can't control. I'm happy and couldn't be more thankful for the support from my friends, family, and community. It really does make a difference. So thank you from the bottom of my heart.
I'll continue to update this blog and keep anyone who's curious in the loop. Feel free to ride this wave with me.
***UPDATE Dec 7, 2017: Shortly after I first posted this blog, I underwent a bone marrow biopsy (not to be confused with transplant) from which we were able to determine the cancer had not mutated. We increased my Gleevec dose, and I began holding myself more accountable for remembering to take it consistently, which is critical to working properly. Now, three years later, I remain in the 2nd of 3 levels of response. I still take a dose of oral chemo each day and see my oncologist every three months. Each visit my cancer levels fluctuate slightly. As of my last labs two months ago, my cancer levels have increased more than we would have liked, but not enough to panic just yet. We have discussed the potential to switch drugs to something called Tasigna, however, we absolutely do not want to do that until we KNOW the Gleevec has lost its effectiveness. We don't want to abandon a winning horse, but switching drugs would also be very hard on my body and provide to a whole other crop of side affects that would take time for my body to adjust to. Not to mention, it's never certain another drug would work at all. So for now, I will continue taking Gleevec each afternoon and take it one day at a time. I know it's not easy to support someone for eleven years. Thank you all for your continued support, love, and encouragement. Family and friends are what make it all worth it.
Cowabunga.
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