Friday July 7
Most days, CancerShrink listens intently, deferring to my impulse to speak. That’s why I was so surprised last week. I was describing the different opinions of the committee in my head when he jumped in. “Just shut ’em down,” he said intensely.
Huh?
He shook his head from side to side, repeating his comment, this time a little less emphatically.
You mean, not delve into the emotional aspects of them? I was half teasing.
Sometimes you don’t give fear a second look. You just do what you need to do to get to where you want to be.
Oh.
Of course, we got there anyway: if I couldn’t ride my bicycle any more, would I still be me? My answer was simple: Nope. I laughed. Oh goody, another learning opportunity to look forward to
The next day, I was reading The Five Invitations. Frank Ostaseski, writing about grief, quotes something C.S. Lewis wrote after his wife’s death: “No one told me grief felt so much like fear.” Well, then, I thought. What’s all this about bicycling and fear?
A piece fell into place.
Saturday July 8
[All names are pseudonyms.]
It’s the monthly meeting of our local lung cancer group. You never know who will be there, or for what reasons people haven’t come. We do a quick inventory of the usual attendees: Amber, preparing for a camping trip with her husband; Betsy, probably just super busy with kids; Chad, having technical difficulties again; David recently fired his oncologist and started with someone new, but since that’s his story to tell, we have to wait for details; Ellen, whom no one has heard from in months, even in response to a simple text. Last time she was with us, she was experiencing new pain and facing tests…. This does not bode well; we’re silent for a moment.
Our group’s founder, Greg, shares an update about Francine, who is not up to attending but still wants us to know how she is. Francine has leptomeningeal metastases, some related cognitive weaknesses, and she’s continuing to lose weight. She told her oncologist she wants to seek entry to another clinical trial. Greg explained that she may not meet the general health requirements (AKA, performance status) a patient needs in order to be considered for a trial. How is a patient’s performance status determined? The organization, Cancer Research UK has an excellent description of the system most commonly used in the U.S:
The Eastern Cooperative Oncology Group (ECOG) and World Health Organisation [sic] (WHO) scale is the most commonly used. Many trial protocols may say they are open to people who have particular performance status, for example 0–2. This is because you must be well enough to cope with extra hospital visits and tests. And for treatment trials you must be well enough to cope with any known or unknown side effects.
0 – you are fully active, more or less as you were before your illness
1 – you can’t carry out heavy physical work, but can do anything else
2 – you are up and about more than half the day, you can look after yourself but can’t work
3 – you are in bed or a chair for more than half the day, you need help to look after yourself
4 – you are in bed or a chair all the time and need complete care
In the past 6 months, Francine’s performance status seems to have hovered around 3. She has begun to try to increase her physical strength and to gain weight; it’s possible her oncologist is not optimistic.
There are murmurs of dismay. But this is the reality of lung cancer.
We always start with introductions: date of diagnosis, stage, treatments thus far, where we’re at today. I give my info, then talk about my bicycling goal and how I’m doing, fears and all. After delivering their own medical overviews, others describe their goals: getting out in a kayak or hiking, playing pickle ball — not always easy for breathing, “but it just means I have to be much more accurate,” laughs Sue. Greg describes his back yard redesign project: clearing away overgrowth, planning, replanting. He emphasizes that he worked up slowly, from near-death. When he started a new clinical trial last fall, he jokes, he couldn’t put on his socks.
One of our new folks, Charlene, is fairly exploding with questions. She describes lingering pain from a long procedure. Radiating out to her fingertips, it’s often unbearable. It has left her fearing that if she does too much, she’ll make the pain worse. It’s kayaking she misses most, but she feels she can’t afford to risk it. Sue jumps in to say she recently began paddling again. Slowly, and with help, but she’s back on the water. Charlene asks questions rapid-fire: can Sue move the kayak herself? Can she get into it on her own, get out? Sue shares some tips.
Then, Paula. She is about three months into diagnosis and treatment. “I really needed to hear this discussion,” she says quietly. “I’m not anywhere near where you all are. I still can’t believe I have cancer. I try to go for a short walk in the morning, then maybe in the afternoon, but it leaves me breathless.” She sighs. “I haven’t known what to do; should I prepare myself to be sitting in a chair for the rest of my life?” She shudders. “That’s why it’s been so, so good to hear all of you.”
One of the things the docs don’t mention is that lung cancer affects one’s sense of self. We all agree– the physical effects of lung cancer and treatment can be awful, but surrendering aspects of your identity is harder.
We tell our newcomers, you take it one micro-decision at a time. Will you get out of bed? Will you get dressed? Will you try to walk up the stairs? In time, those questions evolve. The most important decision is, will you dare to live in spite of cancer?
It’s a powerful discussion. By the end, I’m insanely proud of us.
Wednesday July 12
I wake up out of sorts, something about the day already disrupted. I finally recognize sadness, the shadow of my old friend, grief. I must already be missing my daughter, who will be out of town for at least 6 weeks. CancerShrink says the cancer grief is a constant presence, receding almost completely between scans, then but remerging at other, unexpected, times, triggered by any small sense of loss.
Today is hill day. The training goal is to eventually climb the back of the city’s small (dormant) volcano four times. I am up to one and a half; the half was because last week, I descended only part of the way before I turned to climb again– but I rode the hardest part twice, so that’s good.
Today, I just don’t want to. Fear? Maybe. (Ugh, probably.) But I’d ridden more than 50 miles Sunday, including a half-mile hill with a grade of 7%. At the end of that hill, I felt a surge of excitement– it was harder than the hardest sections of road I would encounter on the way to Multnomah Falls. I’ll be ready to do Multnomah Falls, I realized. That’s good.
Today, though, I’m dragging my feet. I’m secretly glad for the phone call that keeps me in my office, followed by the webinar about lung cancer highlights from this year’s ASCO convention.
ASCO is the American Society of Clinical Oncology; they host an international convention where research reports are made on every cancer imaginable. (In 2023, there are 653 abstracts and presentations related to lung cancer alone.) The webinar makes me realize, again, how hard researchers are working, as well as how much they still don’t know. Today’s presenters are among the many docs who are fierce supporters of their patients; these three frequently volunteer to help us learn about our disease. Today, as they discuss the science, they sound detached, impersonal. I ask whether the research on Exon 20 insertions and deletions is applicable to Exon 20 point mutations– one of mine–and they all respond that they don’t know enough to say. When they start talking about limiting the amount of time a patient is on osimertinib, I’ve heard enough; I leave the webinar.
I still need to do my hills.
I’ve never truly understood the symbolism of riding/running/walking in honor of someone else. Today, as I top off the air in my back tire, I’m thinking of the courage it takes to launch a kayak even when you aren’t sure you can. To walk in the afternoon even a few minutes longer than you did in the morning, even though it leaves you breathless. To take in what others are striving for and be inspired even if you aren’t sure you will live.
So I get on my bike. I do it for them, for myself. For anyone who is trying to do a hard thing, from whatever their starting place, despite pain, shortness of breath, weakness. Because we can do hard things. Because we choose to live to the fullest of our capacity and we give it our best shot, whatever that may be on that particular day.
And today, I ride up the back side of the volcano bottom to top– twice.
