The Cancer Diaries

The joy of life comes from our encounters with new experiences, and hence there is no greater joy than to have an endlessly changing horizon, for each day to have a new and different sun.

Christopher McCandless

Golden Arches by Paul Reiffer

The Cancer Diary on Gratitude by Janine Donoho

   Edit

Light at the end of the tunnel by Kleineputchen

Consider me a ‘dura mater’. That’s Latin for ‘tough mother’; you can look it up. Yet when the brilliant Dr. Ma called to let me know that random choice placed me in his de-escalation study, I danced a wild happy salsa. Yes, those virulent dandelion seeds of squamous cell carcinoma could be circulating through my body—maybe. Count this study as a dazzling light at the tunnel’s end. Then about four days later, I went squishy again.

After all, the radiation-lite version entails two rounds of a long-lasting and potent cocktail of the steroid dexamethasone followed by docetaxil chemotherapy—squish. These two treatments form a three layer club sandwich around two weeks with 20 radiation treatments at 50% dosage—cue the wild dancing! While the former two drug treatments work to ‘soften’ my immune system, lowering inflammation as they minimize a possible allergic reaction and chemo nausea, this reduced version of targeted radiation zaps microbursts of squamous cell cancer in my neck.Dandelion seeding

And wait, there’s more! Way better than a Ginsu knife collection, those of us in the lower radiation level group can expect a much higher quality of life a year out versus continuing side effects from the high radiation treatment—for life. Visualize swallowing in a functional way, because along with a commitment to physical therapy, that’s what I’m doing. Yes, dancing—again!

Push pull equationYou see, it’s a push-pull kind of equation. Even as the oncology field considers this a much lighter version of treatment for oropharyngeal cancer caused by the human papillomavirus (HPV), which has more than doubled over the last 2+ decades, while the smoking and drinking version has halved, you still experience steroids, chemo, and radiation. Go figure.

Yes, one day’s a happy dance with the dura mater ascendant—while tomorrow’s the squish. I own it. Gratitude helps.

For more perspective, here’s my ongoing gratitude list:

Dr. Rosinski, my Spokane oncologist whose commitment to research got me here;

my Mayo Clinic team—yes, an actual team;

the exemplary 6th floor staff at Mayo’s St. Mary’s Campus, whose caregivers got me through the 2 days after surgery. When I thanked them, they all began with self-deprecating, “I just…”;

my bosom buddy Anjali’s amazing and fragrant bouquet that lifted the spirits of the entire 6th floor;Anj's flowers

St. Mary's meditation room 1

the inspirational art, meditation room, and domitilla that kept me walking toward a healthier discharge from the hospital. Picture hiking boots with two hospital gowns;

all the ‘best wishes’ offered by friends and family, which continue to give me strength each and every day;

Hannah of Caring Canines

Caring Canines, who allowed me a much needed pup hit;

my body’s ability to take hits while healing and functioning in phenomenal ways.

Let me close with what makes me laugh right now, yes, a polar bear doing my style of happy dance. Enjoy!

Belly dancing gif

 

The Cancer Diary in the Beginning by Janine Donoho

   Edit

Luminescent cave

It started with nightmares about toxic caves, luminescent with sickening colors of putrescence that I didn’t dare touch or…

Okay, I’m getting ahead of myself, but this does give cred to listening to your subconscious. Also, I debated whether to go into a blog approach at all, since this cancer could be here and gone quickly—or not. Plus I favor my writing and author hats over this one any day.

Then after receiving a phone call shortly after my diagnosis from a retired educator I’ll call ‘Eileen’, I realized perhaps my voice will help others as hers did me. A biologist and writer bring certain strengths and a different viewpoint to this.

And so it begins…

First of all, the form of throat cancer I have is squamous cell carcinoma, p-16+. Boiled down, that equates with being a ‘virgin’ going into this: a non-smoker and the lightest of drinkers. Since human papillomavirus (HPV) has been associated with sexually transmitted diseases, I’d also like to state that I’ve been monogamous for nearly 40 years and the opposite of party girl before that. In the best circumstances, a working immune system stomps this before it presents as cancer. What the hell?

So the symptoms… In August of 2016, I began having problems clearing my left Eustachian tube during changes in altitude. After a trip to the doctor, I was offered a nasal spray, but opted for my Neti pot, which resolved nothing. When earaches developed in the same ear, I tried drops, again to no avail. Then in April, 2017, Intrepid Guy and I started traveling by trailer. Despite truly fab times with friends and fam, Intrepid Guy told me I snored and seemed to have trouble catching my breath, which sounds like sleep apnea. I saw both a sleep doc and my dentist, neither of which saw anything wrong with my throat.

Then in October, my left throat developed an extra-dry place accompanied by trouble swallowing. Since I’ve been playing a decade’s worth of whack-a-mole with Sjogren’s symptoms, I blamed that. Then one morning I awoke with swelling in the roof of my mouth, at which point I did what any curious human does: I stuck a finger down my throat.

I realized, “That doesn’t feel right.” Then I looked down my throat with a flashlight. It didn’t look right either. When Intrepid Guy peered into the abyss, he saw what appeared to be ‘teeth growing’ on my left tonsil. Having viewed slide after slide of abnormal and normal tissues during my UW schooling, I knew something else was going on. Then I hemorrhaged from my nose that night.

After my primary doc tested me for what I knew was not strep throat, she connected me with a throat specialist the next day, a marvel in itself when rural arrangements can take months. Coincidentally, the amazing Dr. Abe Soromstudied with my new Mayo team docs. Yes, more serendipity. He immediately recognized what I suspected, yet refused to diagnose until the biopsies came back. When I asked him to give it his best shot, he said ‘cancer’, then when pressed, considered ‘squamous cell carcinoma’ to be the culprit, adding a few other options. That was Tuesday, November 14th. By Thursday, I was back in Omak, Washington, for a CT scan, then on Saturday, in Wenatchee for the traveling road show PET scanner that benefits poorly served areas.

Of course, shortly after that we were traveling down Highway 97 with a truck full of moving boxes for our new home in Post Falls, Idaho. I collected disc copies of CT and PET imaging along the way to Summit Cancer Centers in Spokane where my new doc—Dr. Rosinski, an oncologist nerd heavily into research—practices. We bonded. That’s what nerds do.

By then it had been about a week since I stuck my finger down my throat. At two weeks, after more appointments with a Spokane surgeon and radiologist, I noticed that the mass had attached to the side of my throat and was less pliable. Dr. R. mentioned a Mayo Clinic study that he suspected would be perfect for me. His office called Dr. Daniel Ma at Rochester, Minnesota’s Mayo Clinic and Dr. R recommended that I do the same. That was the day we had the moving van with roughly half our house in the driveway of the new place.

The stars aligned. Dr. Ma called me right back. Who knew? After we talked, the Mayo personnel moved the earth, and I was there Monday, December 11th. On Tuesday I met my distinguished team—how cool is that? After everyone had a look, Dr. Daniel Price proffered transoral robotic surgery (TORS) fused with a neck dissection for lymph nodes as the first step, then Dr. Katharine Price, the chemotherapy oncologist laid out her approach, which involved two doses of chemo to soften the area for oncology radiation, which is the extremely stylish Dr. Ma’s specialty. His study entails using lower doses for shorter times specifically for ‘virgins’ like me, for whom higher doses can permanently traumatize tissues. Higher doses are the current protocol, but were designed for tissues damaged by heavy smoking and/or drinking. In his Phase III study, I have a 2:1 chance of receiving the lower efficacious doses. Also, if the lower dose proves best in ‘first do no harm’ mode, the study cohort must be switched over to that.

Through this all, I haven’t been frightened or deterred by the diagnosis and science. Didn’t love the surgery, which I had on Friday, December 15th, even though it involved cool robotics that minimize damage to my throat and mouth. Despite Dr. Daniel Price’s super-spidey senses on the robotics, I really dislike having my neck cut—what’s known as radically modified dissection. On the upside? Only two bad boys out of thirty-six nodes emerged as cancerous. The worst moments during my two-day hospital stay? Lymph drainage tube removal followed closely by ‘stripping the vein’ of accumulated fluids.

What I have been since the surgery is lonely, a carryover from where I lived in semi-isolation for the last twelve years. I’ve also been exhausted, never mind drugged into a dizzy, weak, and weepy state. Now I’m drug free during the day, and Gabapentin plus an acetaminophen and/or oxycodone (5 mg) get me through the night. Not surprisingly, it’s difficult to talk. I have to focus on enunciating. There’s also continuing numbness in my left shoulder, ear, and face, and my smile’s totally lopsided. Yes, I smile, even laugh, although black humor takes priority; I watched the final season of ‘The Big C’—by myself, since Intrepid Guy doesn’t love it when things get too real.

Yes, lost ten pounds in ten days, but am holding my own now. My pre-surgery leanness and muscle tone made me blissful, and I aim to return to that. The elliptical’s my ally in this frozen winter wonderland with the advantage that it keeps the endorphins rolling. It also helps to pump out my lymph system now that those nodes on my left neck have gone missing. I restarted at the lowest level, but reached beast mode yesterday.

At three weeks, as I prepare to leave again for the Mayo Clinic on Tuesday, January 9th, the glue over my neck stitches is finally peeling off. I’m still a bit swollen along my left chin, but not longer look like Jabba the Hutt’s estranged sistah. Excruciatingly mindful eating to retrain the scooped out portions of my mouth and throat to swallow has become somewhat less extreme mindful eating, since my nose and windpipe still consider themselves optional paths for both liquids and foods. Periodically, painful spasms move from my left shoulder to the tip of my ear. Ouch! Even though I continue to practice great dental hygiene with the addition of prescription toothpaste, PreviDent 5000, by morning my desert-dry mouth’s full of scumsuckery yuck—yes, more scientific talk. I started eating salads, my fave food, about a week ago, but still have plenty of light eggnog and pumpkin custard to finish  before leaving. In other words, no tears for me.

Numbers wise, HPV+ in oropharynx tumors increased from 16.3% in the 1980s to 72.7% in the 2000s, and this type of cancer registers as the eighth most common cancer in men in the United States. What it also means is that, dependent upon the study, young men have either a 2:1 or 4:1 chance of getting this form of viral cancer when compared to women—a genuine tragedy. Additionally, there’s no associated pain. Since young men are also apparently healthy, as was I, they’re more likely to miss the symptoms until the cancer metastasizes. While we’re finally pursuing HPV vaccines for young women, it appears that adolescent men need to be included, too. Finally in retrospect, Sjogren’s Syndrome calls into question how this particularly impaired immune response affects this cancer.

So that, my friends, is that. This visit to the Mayo could go a few different ways, and I promise to keep you posted. I feel like this entire episode has left me even more focused on what’s important: family, friends, gratitude, and the writing zone. Sending you love along with wishes for our continuing health.

Soundings, Water Elemental

LaunchFebruary 27th, 2015
The big day is here.

Newsletter signup

Join in and receive a FREE short story as my gift to you. Exclusive promos, book deals and contests available only to subscribers.

%d bloggers like this: