I. Was. Wrong

November 2023

So. 

I see my hematologist, Dr. Lee, every 3 months with bloodwork done just before my visit. At my July visit, she told me that according to the special part of my blood work that is processed at Princess Margaret Hospital, I have fallen out of remission.  She explained that she wasn’t sure what to do about this. She had already lowered the dose of the drug I am currently on (Tasigna) due to severe headaches and migraines, so increasing the dose again was not an option. She said that according to protocol, she should switch me to a different TKI in an attempt to get me in remission again. I’ve already failed 2 TKIs, and there are only a few on the market, as they didn’t even exist 20 years ago. She was stumped. I suggested we wait until after my next blood work in 3 months’ time to make a decision- I did not mention to her that I had a flight booked to the east coast the following day, and I wanted to be on it! She agreed to wait, and off I went.

Although I was happy to be able to head out on my vacation without changing meds (which would have meant extra blood work, sourcing funding for the drug, and potential negative side effects), my mind started to race. I am a thinker, and I started thinking negatively. This was it. I imagined my white blood cells increasing, my hemoglobin decreasing etc etc. I felt my spleen growing (as it will as my bone marrow continues to fail). I felt fatigued and WORRY. CONSTANT WORRY. 

Fast forward 3 months later, and my blood work results come back … guess what … they are better than EVER. Hemoglobin normal (that hasn’t happened in over 10 years). Hmmm. It took a while longer for the blood work that Princess Margaret has to do to come back … wait for it… it showed I was back in remission. I have no idea how that happened, but I continued to be worried about the size of my spleen. 

When I saw Dr. Lee in October, she practically danced into the room because she was so happy with my results. When she felt my spleen, she thought it was the same size as before. When Dr. Lee realized how worried I had been, she sat with me and discussed my concerns at length. She said, “Of course you are worried you have 2 very unpredictable diseases that at some point are going to require very aggressive treatment”. Then she proceeded to give me heck for not calling her. She said, “You never call me – CALL ME.”  I tried to say that I didn’t want to bother her, but she had no time for that! She did arrange for an ultrasound of my spleen which showed that it was enlarged but no bigger than it had previously been. Hmph. I. Was. Wrong.

I had talked to some of you about my concerns – thanks for listening, but now I feel silly and embarrassed.  I realize I should be celebrating, but I can’t stop feeling bad for being so wrong. 

I think I’ve figured out that I thought my spleen was large for multiple reasons:

1. I am slightly crazy.
2. Summer ended, and I stopped wearing loose summery clothes and switched to high-waisted jeans that kinda, maybe, sit too high on my waist (compressing my spleen).
3. I’ve been working out a lot, and maybe I’ve done one or two sit-ups too many (compressing my spleen). (Thanks to my sister, Angela, for helping me figure this one out – she now insists on being called Dr. Clair! Haha).

More good news – I had my first clear mammogram in years – no biopsies, no ultrasounds and no repeat mammograms for a year!

And … for those of you who haven’t figured it out yet, I retired. I slipped out the back door in March without telling my coworkers and got in a little hot water about that! I have loved being an RT for 31 years, so it was very sad (and I’m still tearing up now writing this), but it was time. 

It’s been almost a year since my last update – I apologize if I’ve worried any of you, but I promise I will send out a post if something changes. (And feel free to ask if you are curious). 

At some point, things will accelerate, and action will be required, but not now.

With a new day comes new strength and new thoughts.    ~Eleanor Roosevelt

(Photo is the view I woke up to daily in what I affectionately call “my room” (sorry, Scott!) at my friend Sandy’s beautiful home in Victoria. I was so so lucky to be invited to visit again last month).