"CancerCon Part 4: What Is the One Thing That Surprise[d] You the Most During Cancer?"
You mean, besides the Cancer?
It's a HuffPo article, very well written (despite the typo in the title), and it includes a broad range of answers. Those interviewed span the spectrum, from suffocating hopelessness to revitalizing rebirth. I am somewhere in between the two.
What hit me from the article, though, was a comments reply. "Finishing treatment is not the end of cancer... merely the end of when people care about your cancer." Wow... she nailed it. So true. Everyone thinks it's over and all is well once treatment is over. In reality, 'after-cancer' is often worse than the cancer. I wasn't prepared for 'after-cancer.' Nope."
Even *I* thought - for the entire three months of chemotherapy and the following nine months of intravenous protein treatment - that "after cancer" meant "after treatment." It doesn't. Not for me. Not at all. Nope.
My last treatment was in November of 2015. Here's a run-down of a typical week 7 months later.
On an average of 1 to 2 days a week, I wake up with an extremely light-sensitive migraine. If it's a weekend, I am in luck. Monday through Thursday, though, I have to weigh canceling class for 60+ students versus figuring out what I can present in class and still make it make sense. All while ice picks are stabbing at my brain.
On an average of 1 to 2 days a week, I have a frontal lobe headache by the end of the day. Yay. I made it through class, only to not be able to grade, answer emails, or write assignments, usually putting me behind for the next day.
Even time my head hurts, I am reminded that my kind of cancer most often shows back up in the lungs.
And the brain.
On an average of 3 to 5 times a day, I have to find a way to adjust the temperature around or the clothes I am wearing so the prickly heat that makes it feel like someone is pouring acid all over me stops. And so that I feel like I can breathe.
This phenomenon will, from this point on, be referred to as The Amazing Acid Wash.
On an average of 5 to... oh, hell. Averages don't work with this one. Because my cancer feeds on hormones, treatment put me into chemical menopause that we are now doing everything possible to maintain. Unnatural, induced menopause has left me unable to control my physiological responses to stress, frustration, embarrassment, and anger. This meaning crying in public is a weekly - and often daily - issue.
On a daily basis, I am reminded of the cognitive damage of chemotherapy. The blank looks on the faces of friends, family, and students are now the signal that I am no longer verbally communicating effectively.
...Or maybe I'm speaking another language.
In trying to walk at least 30 minutes a day 3 or 4 days a week, I've had to map routes in my head so that when The Amazing Acid Wash hits (and it will hit), I have a quick route indoors so I can make it home/back to my office.
(This isn't so much of an issue anymore. It's now in the 90s everyday, so The Amazing Acid Wash hits before I get from my back door to the car. Oh, to still qualify for a handicapped parking pass.)
What a thing to long for. A handicapped parking pass for a perfectly healthy looking person.
Any day that I stand on my feet for more than about an hour or two, I must be prepared for the next 12 to 24 waking hours to feel like I am moving through jello.
I now understand more fully the definition of "fatigue."
If the shower/bath water temperature more than a few degrees lower or higher than body temperature, I can't stay in the water because the pectoral muscles holding up the silicone sack of my reconstruction begin waves of contractions resembling the birth scene in "Aliens."
And skipping the emotional, relationship, friendship, parenting, spiritual, and financial impacts, every time I'm asked if I would like to join a committee/volunteer/go to lunch-coffee-dinner/go to a party/hang out at the bar, or anything else that isn't happening "today," I have to equivocate. I've committed to things and people I love and miss so many times, only to have some mix of the above force me to back out, embarrassed, with apologies and explanations on the outside and a humiliated broken heart on the inside that I've stopped saying yes. How long, then, is it, until people just stop asking.
What it boils down to is two options. Either I go out and face the world, knowing that the appearance of any of the above recurring recovery facets will elicit some mix of pity, sadness, frustration, cluelessness, disbelief, and/or fear on the faces of those with which I will interact - or I shut myself in and face only myself.
I wonder which option my family would choose.
Both options make me want to start screaming and never stop.
