I knew from the moment I found out the lump in my breast wasn’t a cyst, that I had cancer. The concerned look in the technician’s eyes and serious tone in the radiologist’s voice tipped their hand. My biggest no-doubter though was having had CRPS for 37 years.
For the past decade or so I’ve said to my partner John on more occasions than I can count that I don’t understand how my catastrophic illness hasn’t given me cancer. “How can an organism that’s been attacking itself with this level of pain and fatigue for almost four decades not end itself?” Well the answer is, it’s doing just that.
I’ve never been a lucky person. Despite that, I felt the Gods were at last on my side when my doctors told me that if this thing was cancer, I’d most likely have the “good kind”, the one they know how to treat and is responsive to targeted therapy. True to form though, post-biopsy, my doctor lowered the boom that I have the worst prognosis – an aggressive Triple Negative malignancy. While not all that surprised, I was devastated.
I’ve taken care of myself, helped others and braved suffering my entire effing life. I’ve done everything right. And this is my reward?! With a dozen auto-immune diseases and their many co-morbidites, I’ve never asked “why me?”, but now find myself in the “why ALWAYS me?” camp.
There’s no good way to spin breast cancer – and for me it’s a pain-complicated, convoluted nightmare. My oncologist wanted to do surgery right away, but I said hell no because of the possibility of spreading CRPS. So we’ll start with chemotherapy. I have a 50/50 chance that the chemo will be effective – and if my unlucky streak breaks, they’d like to follow with surgery to make sure they get it all. Again, I’ve said no to cutting, and my doctor has agreed to do the least invasive monitoring follow up. Of course this greatly lowers my odds of survival.
For my 50/50 chance, I’ll have the dubious honor of being bald and extremely weak. I’ll be non-stop retching and experience dangerous weight loss. I’ll also have “chemo brain”, the bastard cousin of “fibro fog.” They’re concerned about neuropathy – and God only knows what this is going to do to my CRPS. The cherry on top is that if I miraculously win this round, chances are the cancer will return with a vengeance in two to three years.
Like I said, I’m angry. Really angry. And scared.
My doctors think that my 37 years of CRPS-driven inflammation caused my cancer. I think they’re right, and I’m terrified that my body’s just going to keep producing it no matter the amount of cutting, zapping and tumor-poisoning they give me. At the end of the day, folks, when people say pain doesn’t kill you, they’re wrong. It’s terminal.
I’m waking up in cold sweats fearing the treatment will take my energetic, life-affirming spirit, the one thing my pain couldn’t rob me of. With that loss, I’d be a shell of Cynthia, and my life would be absent of meaning. Also, I don’t trust western medicine AT ALL. I despise the idea of spending my life as a patient in and around clinics, hospitals, doctors and all things medical. That “care” system failed me miserably – and I swore it off forever ago.
So after getting this diagnosis bomb dropped in my lap, I called the least “doctorly” doctors I know, two integrative medicine guys, both who are angels. They gave me excellent advice as how to best prep myself for chemo as a woman with high-impact, persistent pain.
Perhaps the most useful advise I got was when I asked one of these guys, “So how important is the being positive thing that I keep hearing about?” He sort of laughed, took a moment, and responded with, “It’s more healthy to be authentic.” THANK YOU! I don’t know anyone who is positive thinking just after a serious chronic illness diagnosis, let alone cancer. Just like when pain turns our worlds upside down, we must grieve our cancer diagnosis – and I’m nowhere near acceptance.
Despite all of this uninvited darkness, I’m mindful to see the bit of light that has peeked in. One swimming friend is going to shave her head when I lose my hair so we can go through the cue-ball phase together. John and I are going to New Orleans to visit good friends and self-proclaimed “tour guides” the week before my chemo starts – and they’ve offered a wonderful apartment, their treat. Last night a couple chauffeured us to a surprise scrumptious sushi dinner. Unexpected kindness is my new best friend.
A very close colleague who’s lost a number of loves to cancer called the other day. Gary reminded me that I have way too many people to help and good work to do. He ended with, “you’re one tough broad, Cynthia – and you’re going to beat this.”
Man oh man, I want to live. I’ve fought to live my whole life, and this is the fight of my life. Perhaps I’ll catch a break.