When late summer’s swelter
leaves us listless,
and the soil cracks
for want of rain, remember:
the seeds of new life are small
and often hard to see
Francis Daulerio, “Genovese Basil” as published in Please Plant this Book, 2018
Published by The Head and The Hand,
As I turn the corner past one full month since my surgery, I am reflecting upon how much I’ve learned about how the physical and mental co-mingle in the presence of pain and sickness.
This is not to say that I’ve never toughed through pain and sickness before. It’s just to say that this is the first time that I’ve experienced it for such a prolonged period of time. And faced it in the light of what I might have to go through in the future. This, for me, cast an extra gloomy shadow over my inability to find relief. Especially in the evening hours, when I was left to my pain and my brain. Two things that should never be allowed to talk to each other without extra company.
This week marked a turning point. My incision pain is gone. My muscle pain is better. My appetite is coming back. The gas pain and nausea have significantly decreased. The slowest thing to return is energy. But I am getting there.
They say that time is a healer, but what I really believe is that I owe this week’s progress- more than anything- to the actions I took last week; and the week before that. I’ve been forcing tiny seeds through dried cracked soil. Cursing every moment. Begging for something to sprout.
During these weeks, it has hurt to walk. I’ve been winded doing laps up and down the driveway. I’ve walked through gas pain and thought, “What’s the point?”
And then there was eating. Picture this: You have in your mouth a straw that is attached to a fully inflated balloon. Your job is to blow, to push more air into something that already feels like it’s going to explode. For a while this is EXACTLY what eating felt like.
I had days where I didn’t want to do either. But the thing is, NOT doing anything didn’t seem to do much to make me feel better either. It’s in these moments, I had to give in to my coach (my husband), and do it anyway. I had to draw on reserves. I pictured my mother drifting further and further away, lost to a rip-tide that became insurmountable for her. She had adjusted her eyes to the darkness and accepted it. The light was gone. Not fighting didn’t make her better. It only made things worse. It only made things harder.
The kids were excellent wingmen during this period as well. Swiftly retrieving Mom’s puke bucket just in time. “Walking” with me to the end of the driveway and back a few times. Then to the end of the block and back. Then to the end of the street and back. Still waiting to get past that, but I’m making progress.
Carnation instant breakfasts coated my stomach enough to make small solid meals possible again. Cheerios, cocoa puffs, noodle soup, etc.
All of these were little seeds that helped to get my body back and functioning again. Each meal, each sip a bit of rain. Add a little sunlight in the form of time, and then bit by bit, I squint my eyes and see seeds of normal health popping through.
But there is more going on than that.
Our machine is so much more more than a hunk of meat. It is also a brain; seeking, and absorbing information. And a heart; reacting to each new input with hope and or fear.
After I received my Stage 4 diagnosis, I sought out and joined several secret Facebook groups for colon cancer. Along the way, I met people, had casual conversations on various topics and friended them on Facebook.
In the past 6 weeks, three of these new Facebook friends have died. The first was before my surgery. A Texas Mom of boys. A few months ago, she was excited about a new trial. Then the Facebook post from a relative that she had passed.
Another was from the Cleveland area. She is the only one with Stage 4 CRC that I met with a higher number of positive regional lymph nodes at diagnosis than me (a poor prognostic indicator). When I talked with and friended her, she was nearly five years past diagnosis. A fact that gave me hope. She went on a long European cruise and then collapsed on her way off the gangplank at the end. It had spread to her spinal fluid and she could no longer walk. She posted that she was heading to hospice care. A week later- just after arriving back in Dayton from my surgery in Cleveland- she checked into the ICU at the clinic there and never checked out again.
And just this morning a third. A woman who had a vibrant career as an animator, and who had Disney on her resume. A couple of months ago, she had been denied a trial because she was too far progressed, and went on last-line chemo treatment (Lonsurf). She stuck it through to go on the trip of a lifetime in Korea and Japan. Upon return she faded almost immediately, with her adult daughter posting that she was in and out of consciousness for a few days before finally passing.
I knew none of these women personally. But I knew their stories. I had messaged them. And then they were gone. Processing these losses impacts my heart and brain in same way that my diet and movement levels impact my physical health. How much is too much? How much is just right?
When I go outside and walk, I am not ignoring my fatigue. I am acknowledging it and saying, “but I can do this anyway.” I do not walk a mile. I walk what I can. And then challenge myself to go a block further the next day.
When I put food into a body that is feels like it is going to burst, I am not denying my sickness or pain. I am acknowledging that it is uncomfortable to eat, but that I must do it anyway. I do not eat a bowl of ice cream. I drink a breakfast shake if that is all I can take. Or eat a few crackers. And then challenge myself to eat one more the next day.
So should it follow that I manage my “diet” of mental input in a similar manner? How do I balance the double-edged sword that is an online community of people with my disease going through this with me? A community that reminds me, each and every time I pick up my phone, that I have cancer?
I learn so much from their stories. I rejoice in the good news. But I see the bad news as well. The setbacks. The progressions. The deaths. I am never far away from the next reminder that my life has an expiration date that is measured in months and single digit years.
I’m still working on this one. I don’t want to live in denial of my disease. Or the reality of my prognosis. I also want to stay as informed as I can possibly be and learn from others’ experience. But I’m starting to wonder whether periodic breaks are needed. And if so, how, and how often? When do I just decide to wrap up everything cancer and put it in a box so I can just focus on life for a few hours or days of time?
I am finding that I pick up my phone less often. I am finding that I stare into moments of quiet more often. Letting things so before reaching out for the distraction. I am finding that I now leave it off when I sit down at the kitchen dinner table or am doing another activity that takes up my attention.
Maybe these are just some seeds I am planting. Or a little bit of rain. Let’s see what the sunlight brings next.