My 9 Year Epiphany

This past month marked my 9th year of having leukemia. It was a milestone I was looking forward to because summer 2020, my oncologist told me when I reached that year, I might be able to stop treatment. Those were words I didn’t ever think I’d hear and immediately began to imagine what my life would be like if only. It's a beautiful image.

Honestly, it’s something I had thought about often, actually longed for even before I knew it could be an option just because of how much I’ve struggled with treatment. Although I’ve learned to manage the daily side effects 10 fold since beginning treatment, the damage it’s doing to my body overall becomes more and more evident every year.

And this past year has been the worst. 

Coincidentally in some ways I’ve never felt better. Last summer I finally found the workout that my body needed and could thrive off of. I’ve finally formed healthier eating habits. I’ve never been more healthy nor felt better in that sense. On top of learning my limits over the years, resting when I need to rest, and more, I finally felt like I was getting to the best place I had ever been since starting my treatment. 

But then this year reminded me that while I feel better day to day, the treatment that I’ve been fighting so hard to manage, which is keeping me alive, is also damaging my body. It’s such a double edge sword. 

Over the years my body has changed due to my treatment. I can't drink anything heavy in citrus, I have a dairy intolerance, I’m now allergic to nickel, my hair is fine and brittle, I’m nauseous most days, I suffer with bone pain and fatigue when I overdo it and more things I'm probably forgetting because I’m now used to it since it’s my new normal. But this year has brought new things and it has been so, very frustrating.  

Spring of this year I came down with what I assume was the usual sinus infection. A dry itchy cough lingered. My family doctor retired around the same time and I have yet to find a new one. So when I got desperate enough, I made a trip to the Zip Clinic. Make that three trips over three different months which resulted in what felt like a dozen different prescriptions to help find some relief. And finally I did get temporary relief as we entered summer. Then once July hit, the cough was back with a vengeance. When an attack would happen my throat would feel like it would swell shut, I grasped for air, and the only thing that would offer any relief was chugging water. Days would go by with me getting very little sleep, even with me sitting/sleeping straight up because I couldn’t control the cough at night. I tried every medicine cocktail I could and nothing would do the trick. I finally decided to see my allergist and further testing concluded that my allergies are likely the culprit and two Zyrtec a day were no longer doing the trick therefore I needed to start shots. The kicker, I would need to come in 2-3 times a week for 1.5 hours. Wouldn’t be a problem if it were still summer but it’s not and I can’t afford to miss that much school. So the temporary solution is to take three new prescriptions and a daily inhaler, which have helped tremendously but still not 100%. 

I have no doubt that the CML and Gleevec are the culprit.  

Did I mention I also now have a salt intolerance? That was also discovered this summer. To the point when I consume too much, I'm sick for days. DAYS. And like my other food intolerance I now have, it's easy to speculate that Gleevec is to blame.

Meanwhile I have also dealing with random dizziness. Dizziness is so bad that I have to stop what I’m doing and wait for it to pass. This started last fall. This year I've had appointment after appointment after appointment with an ENT trying to figure out what was causing it. It finally went away, or so I thought, but still dealt with bouts, all though it hasn’t been as common. 

Dizziness is a side effect of Gleevec. 

Also this spring, I went to my routine MRI for breast cancer screening, that led to a breast ultrasound, that led to an MRI breast biopsy on both breasts. If you’ve had an MRI before, you can imagine how panic attacking an MRI breast biopsy can be. You already feel like you can’t breathe while doing an MRI but this was also at the peak of my dry, itchy cough so then when you really can’t breathe, it’s total anxiety. I had to internally give myself a pep talk the entire hour.

One would argue that this isn’t leukemia related but I would beg to differ. I wouldn’t need to do this early screening and being overcautious if not for me having leukemia. Oh and side note, everything was benign. Yay.

Also this summer I finally made it to my 6 month dental cleaning and it came with bad news, news that I knew at some point would come. Among other things, treatment is also really hard on your teeth. Many women who have CML lose their hair, and many lose their teeth. I’ve had nightmares about losing my teeth for years. Literal nightmares. And also for years, I’ve dealt with inflamed gums that made me borderline periodontal. And at this appointment, I was no longer borderline, I now have periodontal disease. It took all I had not to cry when I heard the news. I know it’s so vain but first my hair, now my teeth, on top of just tired of not feeling well, I was just so, so frustrated. (It was a tough few weeks.) And when I made it to the car, I cried. And cried. And I knew it was ridiculous too because I should just be thankful that I am alive to have these inconveniences. I’ve lived an extra 6+ years thanks to this treatment and so many people would give anything to have that opportunity for their self or their child, but gosh it can be so frustrating because I can't help to just want to be normal, feel normal. 

But I still had hope. Also this summer I went to my oncologist for my monthly checkup. That’s when he reminded me that this year would be the year I might have the chance to stop treatment. He referred me to a specialist at UK in Lexington and it was finally time for that appointment. It was the glimmer of hope I needed knowing that there was a chance I could take a break from this medicine that was wrecking so much havoc on my body and just give my body a chance to see if it could fight this leukemia naturally. I knew so much risk would come with it but was so ready to take that leap of faith. 

The oncologist began with all the ways that I was a good candidate to stop treatment. And while he was talking, I could feel the ‘but’ coming. Then it came. The but was, I haven’t had a deep enough response with my current treatment. You see, if treatment works like it should, I should have 0 leukemic cells in my body. This means that the treatment is killing them instantly. I’ve never been at 0 in the past 9 years. Actually, I was once at 0 in the beginning for 3 months but never since then. I’ve been at less than 1% meaning only 1% of my blood cells are leukemic which means it’s being managed and is sufficient treatment wise, but not sufficient to stop treatment. The doctor felt if I did, those numbers would just continue to climb rather than stay stable. He said if I hadn’t achieved a deep response with this specific treatment at this point, I never would. I was thankful I had a face mask on again, because my face could not hide the disappointment.  Again, I had to hold back the tears. (And when I got home, I cried, and cried and cried. I did a lot of crying this summer if you hadn't noticed.)

He did go on to say I could try a different treatment that he felt I would have better response with and if I did after two years, at that point I could see if I could stop treatment. 

2 more years. Maybe. 

He was surprised when I told him I would have to think about it. I wish it were an easy decision , but it’s not. One would think, you say this treatment it's causing hell to your body, wouldn’t you do anything to stop? The simple answer would be yes. But it’s not simple. And that’s because I have a life outside of leukemia. 

When I started Gleevec 9 years ago, it turned my world upside down because it made me so sick. I couldn’t work a regular full time job. I had dreams of one day being a teacher but was convinced that would never be a reality because it doesn’t offer the flexibility that I needed. But here I am 9 years later, teaching, and only because over the years I’ve learned to manage those side effects. For years my kids (especially Talon) got the worst of me because it took all I had to make it through the work day and once I got home, I had to go to sleep. Those days still occur but are not as common (even though this week has been a different story). So to think about starting a new treatment could mean starting over again, and taking years to learn how to manage the new side effects, again, I can’t afford to do that. I can’t afford to miss work at the rate I might have to, I can’t afford to be any less for my kids, even if it would only be for two years and mean after those two I could stop treatment, even if only temporarily, and feel and be better than I had in years. 

I’ve cried out of frustration that the answer isn’t simple.

Since the spring, I have gone to over 15 doctors appointments due to NEW issues that I have no doubt are a result of my CML and treatment. I now take 10 medications daily, with the majority to counteract the side effects of the one that's keeping me alive. The epiphany I had as my 9 year anniversary approached was that while the treatment keeps me alive, I also feel like at some point it will be what kills me due to the damage it’s doing to my body. Because of that, I really feel like I have no choice but to give a different treatment a try but will wait until next spring as summer approaches as to hopefully not miss any work. And hope and pray it's worth it.

And if it's not, I need to remember how lucky I am to get each extra year of life that I do thanks to the bottle that comes in this bag.