November 1st? How did that happen? Now I can’t write the Halloween-inspired spooky blog post that was rolling around in my head. But I can tell you about a few lung cancer-related learning opportunities I’ve recently had.
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Lesson 1: On Lung Cancer and Sick Humor
I’ve been hoarse for two, maybe three weeks now, with a waterfall running down the back of my throat. I hear people with allergies talking about runny eyes, sneezing, but, I swear, I’m the only hoarse person around. And then, my shoulder. Yeah, OK, I did spend some days wrestling a big bush out of the ground; yeah, I am getting on in years; yeah, that’s the shoulder I had surgery on a while ago. And then, I read a post on a lung cancer forum where someone talks about how her hoarseness and shoulder pain ended up being Stage 700 lung cancer. So can you blame me if, when you ask me what’s up with the hoarseness, I say it’s either sinuses or a tumor. My daughter, a cancer survivor, is the only one who gave a snort of appreciation. CancerShrink, usually a fan of sick humor– at least, he laughs along with me– smiled and half-nodded– goodness, did he really think I was seeking reassurance? Was I?
For those of you reading at home, hoarseness and bone pain are on the lung cancer hit parade of symptoms. Lung cancer grows in so many places….Just last week, I interviewed someone whose mother had a brain MRI after some scary symptoms, and it turned out that she had lung cancer in her brain– with no sign of it in her lungs. The doctors just didn’t understand. Of course, those of us who never smoked don’t understand either. Which is all a long way of saying, there is more unknown than known about this stupid illness, so you need to take care of yourself. Here’s a bonus paragraph for those of you still reading along:
The US Preventive Services Task Force (Task Force) recommends yearly lung cancer screening with LDCT for people who:
- Have a 20 pack-year or more smoking history, and
- Smoke now or have quit within the past 15 years, and
- Are between 50 and 80 years old.
A pack-year is smoking an average of one pack of cigarettes per day for one year. For example, a person could have a 20 pack-year history by smoking one pack a day for 20 years or two packs a day for 10 years.
Also, here are also some rules about joking about cancer. 1) The cancer person may or may not be joking. It’s best to check. (Thanks, CancerShrink.) 2) The cancer person is the one who decides what’s funny. 3) It’s really OK to laugh about this stuff.
In truth, some things simply aren’t a laughing matter for me right now. We were at a fund-raising event this week. Mobs of people, cocktails, passed appetizers, a fancy dinner. Me with my mask on at first, then eventually with it tucked in my pocket. One notable conversation with a couple who just returned from Europe.
Me, laughing: Maybe I shouldn’t stand near you– it seems everyone who’s been traveling comes back with Covid. Hahahahaha
Two days later, an email from one of the couple: Got up this morning with a sore throat. Tested positive for Covid.
Me to DH this morning: Hahaha they went to Europe just to get Covid. Then: I’m not going to an event like this again.
DH: Well, you also don’t want to lock yourself away– you have to live your life.
Me: My lungs haven’t been the same since I last had Covid. Don’t you tell me how I’m going to live my life.
What are the lessons here?
- It’s a miracle DH has stayed married to this woman for nigh unto 37 years.
- I really have to work on being responsive rather than reactive. I’m like, blow on a sore spot and I attack. Note to self: Consider taking several deep breaths when you feel attacked. I mean, he’s right, isn’t he? And yet I am, too. I think of my dear friend who passed away this past summer. He was adamant about protecting himself from Covid. I will learn from that.
- I choose how to live my life. Me. I will let this settle into my bones; I will make decisions based on that rather than on what other people think. (<groan> It’s so much easier to be a people pleaser.)
Lesson 2: If You Want To Advocate For Yourself, You Gotta Play By The Rules
Before before we went on our Tour of of the Danube Flood Zone. I’d had an appointment with GastroDude He tried to sweet-talk me, through impeccable use of logic, into waiting for a colonoscopy well into the future, in accordance with some new guidelines. I looked at him sternly. “Do you do colonoscopies on people on chemo?” He had the good grace to look chagrinned: “No.” I gave him The Look well known to teachers and parents of preteens. “Well, then,” I said. So I agreed I could wait until next spring for a colonoscopy, which would have been 31/2 years since my last one.
But that was before my September checkup with Dr. Oncology.
She made a gentle comment. You’ve had so much difficulty with constipation. Have you had a colonoscopy? Now, I read a gentle question from Dr. Oncology as an order from a five-star general. I promptly called GastroDude’s office. Thus began the downward spiral, along the path of Dear-God-Why-Is-This-Medical-System-So-Stupid. Oh, I got an appointment, for December. But it took multiple calls, multiple requests for the appointments people to READ THE NOTES IN MY CHART, a close read of insurance small print, and an online chat with an insurance representative to ensure I didn’t need prior written authorization.
I felt embarrassed as I made the calls, nervous about being dubbed “One of THOSE patients.” But, I decided this embarrassment would probably be in place if I ever got into a cancer-related need to act, so why not practice? Hmmm.
What are the lessons here?
- If I’d asked Dr. Oncology a simple follow-up question, like “Do you think this could wait until spring?,” this whole thing likely would have been avoided.
- Ugh. I really need to embrace respond-rather-than-react. Which, of course, is to explore the idea that reaction is really a way to ameliorate deep-seated fear. Ugh.
- The medical system here runs in a very linear format. Wanna see a specialist? Ya gotta have a referral from your PCP (Primary Care Provider). Just think of the aggravation I could have saved myself if I’d worked through the system first, (i.e., called my PCP) and saved direct assault on GastroDude’s staff as a fall-back position.
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There are so many opportunities to learn here, yet I’m not excited. <sigh> Ah well. Onward.
Thanks for reading. I hope you have a lovely start to the end of Daylight Saving Time, with no bothersome opportunities for growth.
