A recollection of the earliest signs
And learning how to scaffold today (September 3, 2019)
What I posted on September 3, 2019
I’m quickly approaching the one-year anniversary of my diagnosis, and with all the annual events that mark the start of the school year, I’m not short any reminders.
The Gourmet Garden Party, where I thanked neighbors for helping out this year, because I had been feeling “a bit run down lately.”
The elementary school ice cream social, when I interrupted Per to tell him I was tired, and we needed to go. He (understandably) tried to wrap up his exchange. I said, “No, you don’t understand: we need to leave RIGHT NOW” and then made an apology to the other parents which included an assertion that I was “never like this.”
Colleen and Ryan’s annual college football kickoff party, which I slept right through after sending a text explaining that I had recently found out I was anemic.
A week later Colleen called to check in, and I reported feeling a little better—but frustrated because I needed a colonoscopy to figure out what was wrong and couldn’t get one scheduled until December. She sprang into action, calling her friend’s husband, a gastroenterologist.
Later that night, I felt something solid below my right bottom rib.
“What is this?” I asked Per. “This is not me. This is not my body.” It protruded enough that I could see it in the mirror.
We Googled. Nothing that resulted in our searches was good news. We went to sleep holding hands.
The next day, the friend of my friend called, and I told him about what I had felt. He told me I shouldn’t worry, my liver enzymes were barely elevated and besides, I had no other symptoms to suggest anything was amiss. He arranged for his partner to see me two days later, on Tuesday, September 11th, for a colonoscopy.
I told that doctor, too, about the solidness under my ribcage and was reassured again that it almost certainly wasn’t related. My numbers were too good, and other than unintentional weight loss and anemia, I didn’t have any of the normal CRC signs: no pain, no GI issues, no blood in my stool—nothing.
But when I woke up, he told us he had found a “likely malignancy” in my colon and would schedule a CT scan for Friday.
I didn’t need a CT scan to understand immediately that I was stage 4.
The next two weeks were a blur. I met with three oncologists, none of whom seemed to think I had a chance. At some point during this period, Per threw his back out and had to have emergency surgery: an early lesson in asking for help. My mom came to my Cleveland Clinic consult and our friend Coley to my port placement.
By October 1, two weeks after formal diagnosis, I was starting chemo.
They told me 12 rounds of FOLFOX; I calculated I would be done in March. They told me I would not have my period during chemo and warned that I would most likely be thrown into menopause; this frankly seemed like the least of my worries.
So far, I’ve done 17 rounds of chemo, beat one life threatening infection, and recovered from two surgeries.
I’m in awe of my body these days—the same body that a year ago had only barely elevated liver enzymes and no appreciable symptoms in spite of a liver so riddled with tumor, three top oncologists gave up on me before they even got started.
My period has come back each time I break from chemo. And the last time it returned, I was actually ON chemo. I initially chalked it up to a possibly reduced dose, but nope—it may have been my first dose after a chemo break, but it was a real one.
Each return feels like a small miracle, a triumph, like my body is pushing its way back to normal, in spite of the cancer, in spite of the chemo.
“I got my period!” I exclaim joyfully and with a touch of disbelief. We celebrate the normalcy.
(After years of infertility treatment, the irony of a returning period as a sign that my body is working is not lost on me.)
Chemo’s effects may be cumulative, but I’m having an easier time over time. I’m still tired on certain days and struggle with appetite, but the nausea and GI issues have (almost) become non-issues. I tell myself that’s because I’m winning. My body is doing a better and better job of compensating for the shit it’s going through.
Just like it did before my diagnosis.
“People who show up in good shape tend to have better outcomes,” said that first oncologist, and I recall clinging to his statement as the only hopeful thing I heard that day.
Almost a year in, as I look for signs, I realize I have had one all along: and my body is it.
Looking back today:
When you’re caught in the day to day, it’s easy to lose track of what you’ve accomplished.
During treatment, as I watched the scale dip with each weigh-in, I swore that I would never worry about gaining a few extra pounds again. When my chemo rash was at its worst, all I wanted was clear skin. When my hair receded and thinned, I knew that once I was done, I would never have another bad hair day. And I convinced myself that my irregularly recurring period was sign of resilience, as opposed to perimenopause starting to show up.
Like many, I underestimated the long-term impact of my treatment while focused on the immediacy of potential death and the intensity of chemo’s side effects. By now, most of my chemo brain has lifted, but I’ve suddenly found myself in a menopausal body, complete with all the gaining and sagging and drying that apparently come along with it.
Just six months out from treatment, I am already finding myself quickly growing frustrated with the current reality of my physical appearance, overlooking everything my body has accomplished.
And as I try to sort out what, if anything, I want to do about it, I’m conflicted: what role is my vanity playing versus health? The question is particularly fraught, because even with the benefit of a cancer journey to reinforce the importance of physical health, vanity continues to hold an edge when it comes to motivation.
Hence, almost daily, Per and I discuss ways that we could be healthier physically: eating better, drinking more water, fasting, walking more often, getting back on the Peloton…
Thus far, we have successfully incorporated more vegetables into our meals, sometimes.
When I consider some of the positive changes I have been successfully incorporated into my life—regular naps, dedicated time to think about what I’m learning from life, breaks from work before I need them—it occurs to me that many of them are the result of scaffolding (a term I picked up when trying to set our kids up for success):
My weekly therapy + twice-weekly Substack writing commitments are scaffolds supporting my emotional health.
The block on my calendar each Friday, a leftover from when I was working part time, is a scaffold that ensures the urgent doesn’t fully crowd out the important. It’s one day I know I can offer up for valuable conversations and connections—or, when I need it, time to rest.
Once or twice a month, Per and I come alone to our cottage on a Thursday night, scaffolding time for ourselves. We do work on those Fridays, but by the evening we are in position to unwind: heating up pasta sauce from the freezer, mixing a salad (me) and an old fashioned (Per).
I booked myself for a five-day Write to Heal Retreat, a full two months before I have visibility to my work schedule (!).
Sunday nights, I try to draft a meal plan for the week, which makes it a lot easier to get healthy dinners on the table without falling to the temptation of takeout.
And thus, I have decided that my resistance to regular exercise can be solved by the introduction of scaffolding—in the form of a personal trainer.
I’ve even emailed one, and she is currently waiting for me to schedule time on her calendar to connect to see if we will be a fit.
Which I am committed to doing.
Eventually.
At therapy, I wonder aloud why I seem to be hesitant to make this particular commitment to myself, searching for some deeper meaning that will unlock new motivation. Alas, our conclusion isn’t ultimately that compelling: sometimes, we don’t do things, because we just don’t prefer to do them.
And now I realize why I’m writing about this here: because sometimes it’s easier to keep a commitment you make to others; and maybe that’s the scaffolding I need to take one more step toward a healthier and fully-healed me.
I forgot to get my tissue before starting to read ;) This was really great, Gina. Thanks for sharing.
Loved this one.