I don’t think you ever recover fully from Lynch Syndrome. If you’re lucky, surgery and chemo and/or radiation do their job; they eradicate the tumor and eliminate traces of circulating tumor cells in your bloodstream and lymphatic system, effectively curing you if the scary monster trying to kill you.
However, life after treatment is not the life you left before treatment. You learn a different normal. You experience more roller coaster days. Life becomes in limbo, unpredictable again on a deep level.
It can be overwhelming to continually face mortality with each scan, blood test and even physical symptom. Will I ever feel the bottoms of my feet again without the blunted sensation or without feeling like they were just involved in a road rash burn? Will the occasional (thank God it’s occasional) stabbing pain in my toes and fingertips (thanks peripheral neuropathy) resolve or will it increase in frequency?
Is that weird feeling in my intestine a new tumor? Is my fatigue a holdover from chemo, the emergence of a new tumor, or simply the result of too much work and too little sleep? Will my energy levels and productivity rise to what they were ore-chemo? Why do I still (20 months post-chemo) need more rest time? This was supposed to be better by now!
That dream of spending retirement in The Philippines or a Caribbean island are fading, as proximity and access to my rock star oncologist and experienced gastroenterologist becomes a top priority in the equation. It also means I need to think about funding all of this potential extra care. What is going to happen to health insurance? Will this new government unravel the thin security blanket ACA provided to those with chronic conditions?
Yes, I am THANKFUL for all chemo has given me. I’m just having a hard time accepting this new normal and the uncertainty that comes with not really ever knowing that it will be OK. This is a difficult place to live, even for someone like me who embraces change and adventure.
So, I continue fighting for MRKH. I live the best life I can. I celebrate the good times and even the not-so-good times. I’m trying to figure out this new normal, a normal I didn’t choose, but must accept. I’ve been down this road before with MRKH. I know how to forge this path. It’s just getting old and this path needs a big machete! Bring it on!