love is health
No looking back.12/11/2020 This is heavy. Maybe it's the clouds. Maybe it's the long winter nights. Perhaps it's that I was off letrozole for a week while it was lost in the mail. Whatever the case - this is where I'm at right now, for better or worse.
It's sinking in that I'm going to be in treatment and surveillance for the rest of my life. I'll always be on oral chemo to prevent recurrence. I'll always have some sort of scan, exam, or test each quarter, and I will have to deal with the anxiety that comes with waiting for results. Li-Fraumeni Syndrome (LFS) is a real motherf*cker. I was so looking forward to the end of this year, because the end of 2020 meant the end of active treatment. It signaled the completion of 5 surgeries, 5 months of chemo, and the rebound of my suppressed immune system. I have been so focused on just pushing through each phase until active treatment was done. Get through AC chemo. Finish Taxol. I wasted no time getting back to work, then cruised through my ovary removal. My mastectomy is next week. December felt like the last leg of an Ironman. I just needed to cross the finish line. Just. Keep. Running. But there is no finish line. It hit me today while planning out my next procedure after my mastectomy. As my new care team member (I collect physicians, lol) talked me through the procedure prep - what I could eat and when I could eat it, what would be done to me while I was sedated, recovery details - I zoned out for a moment to recognize this is the rest of my life. There will never be an end to prevention and maintenance. Because of LFS, I will always need to be very cautious and vigilant. This realization just about broke me. One quarter it will be an MRI, the next, a bone density scan, the next a dermatological pat down, a colonoscopy, endoscopy, ultrasound, another MRI. With each birthday, rinse and repeat, ad nauseum. There's no more "wait and see" when it comes to bumps, lumps, or any symptoms out of the ordinary. Ordinary is gone. But there are plenty of opportunities to find cancer again, or appreciate near misses as they happen. Speaking of near misses: When my ovaries came out, there were 2 benign tumors on one of them, in addition to multiple inclusion cysts on both of them. 90% of ovarian cancers start as inclusion cysts. I felt like I dodged yet another bullet. I can't help but wonder what pathology will uncover after my mastectomy. I certainly won't be surprised if there's a finding. I'm not hoping for it, but after my oopherectomy results, the reality is really setting in that my body isn't great at preventing tumors. There's no going back to normal. I knew I couldn't return to life as it was before I had cancer in 2013, but there was part of me that still believed I could return to life as it was before this year. We're all yearning for life pre-pandemic, yet that's not an option for me. My LFS diagnosis means there will never be a year that passes when I don't have to deal with a battery of scans, tests, and procedures - and the anxiety that comes with them - to catch cancer early should it emerge again. Of the losses I've experienced related to cancer, this one may sting the most. Being diagnosed with LFS means I've lost the privilege of believing my likelihood of getting cancer again is low. While I take a lot of pills, that's the toughest one to swallow.
1 Comment
Nora
12/11/2020 08:03:57 pm
I love you sister you are the strongest person I know
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