How to Be Your Own Cancer Advocate

The Quiet Backdrop of Being A Cancer Advocate

It’s the second day of rain here, sometimes heavy and driving, sometimes a steady sheet. After a dry summer, there’s an undercurrent of excitement through town. The rainy season of the Pacific Northwest hasn’t arrived quite yet, but soon it will settle in. The earth– and we– replenish.

I’m ready for cancer life to subside, too, but that seems like the rainy season. So I plod along, me and my five cancer medicines, my bloodwork, my side effects, my wonderings about the new normal I’m carving out.

The theme of this post is cancer patient advocacy, being an advocate for myself. The bottom line: now that the direct cancer treatment is complete, the urgency has subsided. Details have fallen to the side. So I’m going along, picking them up and following through.

Cancer Patient Advocacy Opportunity #1: Steroid Taper

The Covid situation has our hospital ICUs almost full. Nurses who don’t wanna get vaccinated– muh freeeedom they cry– are leaving. Staffing is at critical levels and nurses Iknow sport long smudges under their eyes. The crisis affects doctors, too. My pulmonologist is splitting his time between the ICU and his regular practice. He’s supposedly supervising my steroid taper, but the next available appointment I could get is in November. That’s long after steroids supposedly will be out of my life thank God. Having been through one taper, and after doing a bunch of research, I started my own plan last week. I’ll drop 10 mg. a week until I get to 20 mg. Then I’ll drop 5 mg. and maybe stay at 15 for 2 weeks, then 10 for 2, then decrease 1 mg. at a time. Why? My adrenal glands have been on vacation in Tahiti for months and they like island life. They love it. They’ve turned off and they’ll come back kicking and screaming. Can you say side effects? Nasty, nasty ones.

I called Friday and reported my plan to the nursing assistant. “I just want someone to know– please make sure someone reviews it and if there’s a problem, contact me,” I said firmly. She promised to check with her supervisor and see if they could call Dr. Pulmonology on the unit Monday. Later, on the afternoon call about a prescription, I learned  the supervisor had given a thumbs up and they’d still be contacting the doctor. That was two calls. Plus to the pharmacy about the somewhat exotic and expensive antibiotic that’s due for a refill. Plus other stuff.

Imagine if I hadn’t made my plan? Called? I’d be coasting along on 60 mg. a day, my chipmunk cheeks getting puffier by the moment.

Cancer Patient Advocacy Opportunity #1A

This is an outgrowth of #1. Dr. Pulmonology’s response about the taper was tied to the results of the pulmonary function tests, I learned last week. Who knew– and

who would have known without calling? I had the tests last week. That was kind of cool. It involved sitting in a small room and huffing and puffing into tubes to measure three things: “ability to move air, the amount of air your lungs can hold, and your ability to transfer oxygen from your lungs into your blood vessels,” according to Dr. Pulmonology. “I am pleasantly surprised, but your pulmonary function tests are normal,” he wrote in a medical chart message. HOT DAMN! My daughter wants to know when I became bionic. Exercise, baby. I credit the exercise.

Spirometry device The patient places his or her lips around the blue mouthpiece. The teeth go between the nubs and the shield, and the lips go over the shield. A noseclip [sic] guarantees that breath will flow only through the mouth.

Cancer Patient Advocacy Opportunity #2: Thyroid Test Results

The immunology drug can kill your thyroid. (Oh, I haven’t mentioned that before?) Given that I have two possibly cancerous nodes in my thyroid– <sigh>–I’ve been watching my thyroid blood test results like a hawk. After my final appointment with the oncologist, some two weeks ago, the thyroid levels had bottomed out. One below the bottom, a actually. I called, sent  a message through the medical chart system, checked regularly to see if they’d looked at it– they had– called two more times. Radio silence. This is not typical. I called again yesterday, stressing how long I’d been waiting for a call back. Finally, the call came yesterday. I reminded the triage nurse why I was concerned. “But nobody has called me back,” I said, in my best crocodile weepy voice. “Oh,” he said. “Oh! I’ll talk to Dr. Oncology and get back to you.” He did. More bloodwork today. Yippee.

Imagine if I hadn’t checked the test results? Made the multiple efforts to reach out? I’d be coasting along, lugging a glad that may have sustained mortal damage. Well I still might. But that’ll just add to the cancer medicines for now.

Cancer Patient Advocacy Opportunity #3: Pharmacy Nonsense

Thrush. In my mouth. Why? So. Many. Steroids. They suppress the immune system so the normal stuff in your mouth can stage a coup. After you’ve had it once, you know the signs and you can catch it early. I got an appointment with urgent care on Sunday, two days ago. Fastest appointment on the planet. Opened my mouth, “Yep,” said the practitioner. I gave the name of a pharmacy I know would be open, sauntered out, did an emergency caffeine drive-through, and headed home to wait for the text to say the prescription was ready. It never came. By the time I checked the Rx. status online, the pharmacy was closed. And the status? Delayed because of an insurance question. Did they call to get the information? You guess. Yesterday morning, I called my regular excellent pharmacy and asked them to get the Rx. transferred to them. Then I waited for a text to say it was ready. It never came. I called in the late afternoon. Their phones had been out so they hadn’t been able to text.

Imagine if I hadn’t called? A colony of evil spreading through my mouth, down my esophagus. Oooh, exciting.

The Moral of the Cancer Patient Advocacy Story & How-Tos

This is for cancer life, but I think it’s relevant to all medical situations, at least in the U.S. Let me break it down.

1. Ya gotta stay on top of the details.
2. In order to know what the details are, you have to know enough to identify the important stuff you should track.
   1. Learn. Preferably peer-reviewed research, or from reputable sources like the Mayo Clinic, the NCCN (National Comprehensive Cancer Network) or other cancer authority, a medical practice you can authenticate. If you find info from a blog or discussion board, you can research it to see if it applies to you or has a grain of truth.
3. If you’re fielding a lot of different balls, keep notes: when you called, the number you used, who you spoke to.
4. Know the system of whom you’re trying to reach. Follow it until you can’t any more. Then get creative in your work-arounds.
5. Know exactly how many questions you need answered and say that up front: “I have 4 things to ask you.” That settles them down enough that they don’t answer one thing and prepare to hang up.
6. BE CALM, POLITE, KIND. Try to get under the professional exchanges of the folks you talk to. Weather, the weekend, anything to break through. It can make you memorable for the next time (because there will be a next time).
   1. Also, don’t be afraid to sound pathetic, apologetic, a little afraid, whatever it takes to make a connection that may motivate them to go the distance. I apologize for being a pain even though I shouldn’t need to: “I’m sorry to be such a pest– I know how hard you are working right now.” Sometimes a woe or other comment slips out and I am sure to respond to it. Learn their names and voices so you can say hello.

It seems healing from cancer involves lots more than directly treating the disease. Nobody tells you that. Oh well. Another opportunity to learn.

Here’s hoping you learn something interesting today.

Thanks for reading.

Images

Rainy downtown Portland: Eric Sonstroem

Tropical image by romaneau from Pixabay

Spirometry device: Wikipedia

Lab image by fernando zhiminaicela from Pixabay

Balanced cell image by Hilary Clark from Pixabay