Tired of being “sick”

I still can’t wrap my head around everything that I’ve adjusted to over the last 2 years. I went from being a normal 26 year old with a plan for a life to being a terminally ill cancer patient in the blink of an eye. I’ve kissed my breasts goodbye, my hair (goodbye and hello again), my ability to have children, I’ve watched my weight go up and down and up again, and experienced the highs and lows of my roller coaster life. And the whole time I’ve thought, “things will level off. They have to.”

What does that mean? Seems foolish to have ever had that thought as I sit trying to absorb and process the fact that my cancer is progressing today… my 6.7mm guy shot up to 9.9mm in 2 months. Leveling off is not a possibility in my experience of the disease (today). There is always something to adjust to, to process, to cope with, to accept. And frankly, I’m fucking TIRED of it. I’m tired of the hot flashes. I’m tired of the weight gain. I’m tired of the tearfulness.

I am working with an incredible integrative oncologist in Oregon (she came from Sloan Kettering) and she recommended I get off the wheel of failing 1st-2nd-3rd- (etc) line treatments and pursue something that has potential curative benefit. She connected me to an immunotherapy trial at the NIH/NCI in Bethesda, Maryland. This trial appears to have “cured” a young woman like me in 2016. Unfortunately, it was determined last week that my cancer is too small for their trial at this time. That’s kind of a mind fuck. So you want your cancer to grow?! Kinda.

I am going off of my treatment next month. To help grow my tumor for this trial, and to give myself a Fucking break. I am done playing cancer whack-a-mole. I want out. This immunotherapy trial gives me a shot at that. There are no guarantees. The only guarantee is that if I continue on toxic treatments that work for a little bit and then stop, I’ll be doing that until I’m dead, and statistics say I’m about halfway there. We know that this is what tends to happen with metastatic breast cancer, as this is standard of care practice. Getting a cancer that is most commonly diagnosed in 65 year old women in your 20’s is hardly standard. I require a different approach. And if it doesn’t work, it doesn’t work, and we will figure that out. But I know I can’t stay on these hormonal drugs much longer. If it’s about quality, not quantity, then I need to do what’s going to make me feel okay in the time I have left, however long that is.

This is a cranky and poorly written post because I have slept about 3 hours due to hot flashes and anxiety. Which is why I need a break….

Thank you for thoughts and prayers as always. 🙏🏻

5 thoughts on “Tired of being “sick”

  1. Praying for you Amy always, you are so strong and we hope that you will be able to get into the NIH immunotherapy trial. Love, Barb and Marc

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  2. Yes, that is unbelievable that you have to be ‘sicker’ to be put into a trial. I’m so glad you are going to go that route though. All prayers are with you.

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  3. You are always in my heart, and in my thoughts and prayers, Amy. This is not a burden you should have to carry. This is not a burden ANYONE should have to carry. That you do it with such grace and grit is to your credit. I fervently wish you success on this new path you’ve chosen. If you ever need a listening ear, please reach out.

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  4. Hi Amy! It’s nice to hear from you. I totally get what you’re saying, It’s like you put into words what I feel. I was faced with this exact situation about 4 months ago in deciding to start a targeted chemo or do immunotherapy. For some strange reason I chose the chemo (probably because it was closer to home instead of flying cross country every 3 weeks) but now I’m like what’s the point. This drug is supposed to give me 7-9 months. And people have been cured by immunotherapy! I hope you get into the trial and it works well and quickly. I think of you often.

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  5. Thinking of and praying for you! You inspire me to study more, to understand more, so treatments can be as unique as you! Unfortunately, clinical trials are so far small experiments that “sample” a population of people so they can all share the same set of variables for analysis of statistical significance. Can we change this paradigm since when it comes to the individual, this is messed up, especially when there just aren’t enough twenty-somethings with breast cancer (none exactly the same) to learn from? The other side of that coin is “hope” that you can blaze a new trail and find a way that others can follow. Since you are unique, I like the idea of your immune system waking up and taking care of this problem for you.

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