With a Little Help from My Friends | Feb 18 2023

February 18, 2023

Happy President’s Day! Typically this is the weekend we head into the yard for the pre-spring chop of the rose bushes, but the local garden center is advising that we hold off because of the likelihood of more frost. I’m glad; it’ll be nice to hole up, catch up, and reflect.

What They Don’t Tell You

Yesterday and today I spent time with my cancer people. In my lung cancer group, everybody checks in: where are we medically (tests, meds, any metastases?) Need any resources? Then conversation can circle in on anything. Today, one person shared that her pulmonologist asked her if she’d prepared a  DNR, and sent her home. “For a little while, I thought, ‘Well, I guess that’s it then,'” she said. “Then I got mad.” It’s since she’s been joining our meetings that she’s made significant changes in her care team and gotten treatment. Now she’s got to get away from this idiot, and she was taking names.

And so a conversation began. I told about a friend who’s 6 months out from treatment for a cancer that’s not lung-related. He mentioned to his oncologist that he is just realizing he’s depressed, traumatized from the treatment experience (his was pretty horrendous.) “Oh, the oncologist said, “Six months out is pretty much when depression hits.” But did she tell him this?  Nope. Did anyone tell him to prepare for the worst constipation he’s never before experienced? No one on his medical team; just another patient he chatted with before he started treatment.

“It’s because they’re not trained to treat people,” one of my lung cancer pals said. “They do the science. The statistics.” They kill off the disease in our bodies– thank god– then they send us out to fend for ourselves with difficult, sometimes life-affecting side effects, feelings of despair, loneliness, grief.

And while we’re dealing with all that, we get to hear from friends or strangers about keeping a positive attitude or, as one woman shared, people who say that cancer is a gift. “I would have punched that person,” offered a gentle member of the group. “I probably should have,” the first woman replied. “I mean, what about this is a gift, exactly?” She shook her head.

“You have to get rid of those people,” our gentle soul said with surprising firmness. “I have a friend who keeps wanting to visit, but I tell her not to come. She couldn’t handle it and I don’t want to end up helping her.” 

Maybe the docs are trying to not influence a patient’s experiences by introducing negative possibilities. (Can the power of suggestion trigger depression? I’m betting, no.) But they could say, “Every person who is treated for cancer responds to treatment and recovery differently. Sometimes people experience nothing but a need for more sleep. Sometimes people can experience x, y, z. If you encounter any of those things, or anything else, please contact us so we can help.”

Of course, first they’d have to be sure they have the resources in place, and I am not sure many places do.

My non-lung cancer friend is crashing into the rubble of what-the-hell-happened-to-me? He continues to be swollen at the site of treatment, can’t taste food, and is too tired to do what he loves. Someone says, “Let’s go hiking,” and he begs off– he can’t do it. “They think I’m making excuses. They think since I’m done with treatment, I must be done with cancer; it looks like I’m making up an excuse.” He sighed.

Being done with treatment is only the beginning, but nobody tells you that, either.

Post-treatment plans are supposed to be the latest, greatest Thing in cancer care. Have you ever looked at them? A list of notes and check boxes of when your next scans and appointments are, and admonitions about how important regular follow-up is. Nothing about how to build strength, get your nutrition in order, deal with some of the trauma. Nothing about how to talk to people about it.

Think of the slick little handouts Big Pharma could sponsor with the tiniest percent of their profit margins. Just think of how many more people could be helped.

All Kinds of Coaching

I’ve joined a little training club on Facebook. It’s a group of Peloton enthusiasts who are preparing to follow in the tire treads of one of our favorite instructors, track racer Christine D’Ercole. Christine rode up Mt. Haleakala in Maui, HI, one of the hardest rides in the world. After, she created five Peloton rides that replicated her ride. A couple of times a year, this little endurance group collects itself to ride these five rides at the same time on the same day, and to train for 11 weeks beforehand.

I started the training. It’s basically three rides a week. One 45 to 60 minute endurance pace ride, one hill workout, and one long ride that is half endurance and half climb. I was actually enjoying the rides that were 1.5-2.5 hours in the saddle. But I had a week where the Sunday endurance ride and the Tuesday long ride left me fighting a cold, so I skipped the third ride. The following week, the same thing happened, except then I got the cold for real. The ultra-rider (multiple days of big mileage mountain competitions) who coaches the FB group very sternly told me to back way off and consult with my medical team just in case this is a signal there’s something going on besides overtraining.

Much to my surprise, I’ve followed directions. I personally suspect I’d been progressing into hard cardio territory faster than my sad lung can acclimatize. Over the past two weeks, the two long rides, plus the endurance and hill rides I’ve done have been lovely, and after the total time for the week, I’ve felt fine.

And then there’s today. Today I’m whupped. I think it’s the cumulative effect of the total amount of cardio this past week– I did a three-hour snowshoe hike at the start of this past week, plus the three rides according to the training plan. I can’t help but wonder– does a lung cancer person just take longer to train up for increased cardio? Are some things considered not possible for us? (Ba humbug on that– it’ll just take different kinds of training.) I video chat with my bicycling pulmonologist next week. He’ll tell me to lose weight (ugh) and then he’ll talk some real turkey. Which is exactly what I need.

#always something to learn

Thanks for reading. Here’s hoping you learn something new this week, and that you have someone who will talk turkey to you when you need it.