Cancer Comes, and There Go the Blueberries
Welcome “Mucinous Adenocarcinoma.” And as cancer arrives, "There Go the Blueberries," a poem by my lady that is surreal and almost unbearably sweet.
This edition of FrauenTimes is cancer-y.
The first item is the first part of an essay, “Ok to Go.” It is about my recent appendix cancer diagnosis. About the backstory, my initial reaction and the path ahead. And about asking what lessons will cancer teach me–and maybe us–about hitting back, harmonizing and healing?
The second item is a video of my wife Rowena Richie reading “There Go the Blueberries.” Plus the text of the poem. Rowena blew me away with these words. See if you can watch it/read it without laughing, crying and feeling a little bit more grateful to be alive.
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Ok to Go—Part 1
I’ve got cancer. It’s going to be a challenging 12 months. But cancer also has put a new charge into my life and my work. And I’m prepared for this.
I’ve got a slog ahead.
A year-long adventure in cancerland, likely filled with months of chemo, an 8-hour operation that reshapes my gut and days in the ICU. Not to mention the risk of complications, lots of muscle loss and looser stools for the rest of my life.
Yes, it’s kind of shitty.
And yet it’s kind of inspiring.
The cancer I have is far from a death sentence. Mucinous adenocarcinoma stemming from the appendix offers decent odds that I’ll live another 10 years or more, with the biggest downer being poop that “runs” closer to diarrhea. 💩
And already, the gifts of this disease are piling up.
For one thing, I have new material to write about! In particular, I am determined to question the typical narratives around Battling, Beating, Crushing cancer–framings that I think stem from our hyper-masculine, overly aggressive culture. Yes, this is a contest of sorts with misguided cells. But to focus only on fighting this disease may hurt besides help. In this sense, cancer is acting as a catalyst for my continued work to help free men and everyone around them to live healthier, fuller, more soulful lives.
So I’m jazzed to keep working. Yet I know I can rest and surrender when I need to in the months ahead, held by others. I am awed and buoyed by the immense support springing up around me, my wife and our kids. The somewhat scary diagnosis has already prompted the most reassuring surge of care, generosity and love.
And I can’t help but feel lucky it’s not worse. Not pancreatic cancer, a malignancy that generally kills quickly. Not a colon cancer likely to result in life with a colostomy bag. I may not have the super-rare, almost silly condition I’d originally heard was likely–”Jelly Belly.” But I still have a slow-growing cancer. One that still comes with the comedic side-effect of slinging slime in my belly.
One that entails a treatment journey I think I can manage. Especially since I won’t be doing it on my own.
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For all that I chafe against competition and aggression, I might not have discovered I have cancer for months or years if not for my extreme sports fandom.
Easter Sunday, I was watching my Golden State Warriors play the Houston Rockets in the National Basketball Association playoffs. I was in Winston-Salem, North Carolina, at the home of my dear friend Temple. And I was trying not to wake her up, given that the game was on late at night Eastern Time. So I channeled my cheers and enthusiasm into full-body clenches. Squeezing my abdominal muscles, balling my hands into fists and hissing “YES!!!!” under my breath. Given that the Warriors beat the Rockets 95-85, there were many of these moments.
One of those stomach crunches may have irritated or even popped the tumor growing on my appendix. Because the entire next day, my lower belly hurt like hell.
As I wrote in my last post, the pain prompted me to go to the emergency room in Orlando, Florida. I’d flown there from North Carolina to give a talk on men’s healthy aging at the American Society on Aging annual conference.
Although I had to skip my talk, I figured I was doing the right thing for men’s healthy aging. This 57 year old was going to take his pain seriously in case I had appendicitis–an ailment that is fatal 50 percent of the time when not attended to.
I’m glad I got to the ER. But once I did, a saga with dizzying plot twists unfolded.
At first I was diagnosed with a ruptured appendix. But once I was admitted to the hospital, my primary doctor said the CT scan of my belly showed signs of a “malignancy.”
Scary!
And then strange. She said it looked like I may have “appendiceal mucocele with carcinomatosis.” In other words, cells from my appendix had gone haywire, spread throughout my abdomen and were producing mucin–a mucus-like substance.
I’d never heard of cancer cells that cause problems by creating the equivalent of snot.
And then things got downright silly. Dr. G, a cancer surgeon came to speak with me, and said it was likely I had something called “pseudomyxoma peritonei.” This is a super-rare condition also known as “jelly belly,” because the rogue cells gradually fill up the abdomen with mucin.
Jelly belly affects just 1-3 people in a million. I was feeling special. And relieved. Because Dr. G described the situation as very fixable and not cancer in the traditional sense.
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It turns out I’m not that special. The next plot twist was sobering.
I returned to San Francisco, where I saw doctors from my health system, Kaiser Permanente. My cancer surgeon, Dr. C, agreed that Jelly Belly was a possibility, but wanted to do an exploratory surgery to take a closer look and get biopsies to confirm what was going on.
So I had laparoscopy surgery earlier this month. Dr. C punched three holes in my abdomen, took out my appendix, and took tissue samples.
For three days, I was more sore than I expected. And in something of a brain fog from the general anesthesia. But on the fourth day I turned a corner. I felt like myself. And eager–as well as anxious–to hear about the results of the tissue samples.
Those results came back last week.
Not the best news.
Back in Florida, Dr. G had said that I may have something more serious than Jelly Belly: mucinous adenocarcinoma. And that’s what the biopsy showed.
In explaining the diagnosis with me, Dr. C also said it was stage four cancer, since it had spread beyond the appendix.
Stage four cancer.
Those words put me in shock for a moment. I felt dizzy. Dissociated. Frightened to my core.
Even as I write this, I feel an echo of the existential terror I experienced at that moment.
But the moment didn’t last long.
Dr. C went on to say the cancer is quite treatable.
The recommended protocol for this kind of appendix cancer is four to six months of chemotherapy, along with a major surgery to remove the tumor and cancer cells.
Most people with mucinous adenocarcinoma who go through this treatment are alive five and 10 years onward, Dr. C said.
He said this kind of cancer typically recurs. The literature suggests a 71 percent recurrence. But the same treatments can be repeated. Ultimately, it’s a relatively slow-growing cancer.
Dr. C’s diagnosis dovetailed with my own google research: people with “regional” mucinous adenocarcinoma have a five-year survival rate of 64.5 %.
Not the worst odds.
What’s more, Dr. C painted an encouraging picture of post-treatment life. I’d lose my gallbladder and part of my colon during the surgery. But its quite possible that the only long-term impact will be looser stools–given that my intestines will be shorter and have less time to process waste.
Fine. A future without constipation!
***
Indeed, I was pretty peppy after getting off the phone with Dr. C.
Maybe my positivity had something to do with reassuring my wife. Rowena listened to the call with Dr. C. with her head in her hands most of the time.
She took the news hard.
For example, the next morning on the Prayer Porch conference call we have with friends, she explained her reaction.
“WHAT THE FUCK?!!” she screamed. Then she actually screamed.
Rowena also said she appreciated my hopeful outlook.
But my own optimism has ebbed and flowed since then.
Cancer sucks. I get that phrase more than ever.
What has been difficult in the past week or so has been the all-consuming nature of the diagnosis. Cancer is casting a pall over every moment. I’m finding it hard to compartmentalize cancer from everything else–work, being a good dad, being a good friend and citizen.
Dread wells up at times in ways I am barely aware of. Or shocks me. Waking up from a lovely nap or walking in warm sunshine, it will hit me like cold water splashing across my entire body.
I have cancer!
One of the things that scares me most is that I won’t have the stamina to survive. That I will “choke” in the cancer “clutch.” That I will fail to fight hard enough.
I tried to remember moments when I’ve shown endurance and a warrior spirit. The first thought that popped into my head was a moment from my high school soccer career.
A teammate told me that while I was out on the field playing, Coach McAllister said this on the sideline: “I wish I had 11 Frauenheims out there.”
The comment surprised me, because I was insecure about my effectiveness and skill level. And at a deep level, I worried about whether I was a “winner.”
But I hustled. And that seemed to impress our coach.
Robert McAllister died in 2021. But perhaps he made a coaching move from the great beyond. Because within a few days of me taking heart from his remark, the very teammate who first shared Coach McAllister’s praise in the early 1980s reached out to me on Facebook.
I hadn’t been in touch with Adam B. for decades. But there was his message, thanking me for sharing my health journey publicly.
It felt like a minor miracle. And it only got better when I asked Adam if I remembered Coach McAllister’s comment accurately. Yes, he said.
“That younger version of yourself, putting forth real effort when it mattered, that made you stand out,” Adam wrote. “That same strength is still within you!”
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Stay tuned for Part 2 of “Ok to Go,” hitting inboxes soon. You’ll hear about tears, prayers for cancer cells, another minor miracle communication and the thrill I feel at doing my best impersonation of Jodie Foster in Contact.
There Go the Blueberries
My artist wife Rowena Richie wrote this poem and spoke it on a zoom call we have monthly with our friend Steph Schaaf. It touches on cancer and care and community and connection. If you watch, I’ll think you’ll understand why I think no one is luckier than me when it comes to a lover and life partner.
Text of the poem:
There Go the Blueberries
There go the blueberries. Bouncing out of their Pyrex dish in the fridge. There go the blueberries. Frozen roly-poly sentinels spreading to the winds. The sentinel lymph node detects cancer spread and is often dyed blue.
I was cleaning out the freezer to make way for a delivery of soups from the cancer pantry—friends feeding us. They're popping up everywhere, making stew with what we have. Damascus stew, Red lentil coconut stew, chicken bone broth, chicken congee, minestrone with kale. Ka-ill cancer.
The cancer fighting blueberries are everywhere. Blue ice balls skating along the bottom of the freezer drawer that won't come out. I flatten myself to the floor and slide my arm up the length of the drawer like a Zamboni trying to clear them out of the rink. My plow arm gets stuck, they come out with a jerk and scatter across the filthy linoleum.
At first, I'm trying to save them. They're costly, handpicked, carefully carted home from the farmers market. Blueberries now gritty with dirt. I'm putting them back in the Pyrex, I can rinse them off and refreeze them right?
They're popping up everywhere: under the toolbox; the frozen paint brushes stored in the freezer from a long abandoned home improvement project; my ass. I wonder about rinsing them. After all, can I save them. What if I inspect and polish every individual blueberry?
Yes, I have to invest. I have to care about every single one, every single ball of blue. I see you under my knee. I see you under the recycling bin. I see you. You are the one worth saving. ICU. You'll be in the ICU for 48 hours because the chemo bath will harsh your guts, hot as fuck. It's a shock. Treatment. Your blood pressure will dangerously drop. They watch you in the ICU.
I see you in the ICU. Scruffy white sideburns framing your peaked cheekbones, lips parted, open eyes, some tubes taped to your face. Another falling-open gown printed with baby's breath. Your ivory clavicles rising and falling like hollow wings. I can't wait to wake up next to you again.
I hope it's good in there, wherever you went Anesthesia, fog draped around your shoulders. You come from very far away at last, shaking it off. “Does this tube make my nose look bigger?”
I see you, kiss your big nose, bones, eyelids. Swim my fingertips in your locks. I love it up and over to the side, park my fingers over your brow, your Cro-Magnon ridge. Richie to ridge, head to head. My orb against yours, balancing our blueberries.
I melt. We warm each other's heads between our hands. Limitless blueberries. Cancer pantry of friends. Four hands, two heads, as if it's the one worth saving.
***
The blueberries, saved:
Appreciate you Ed ❤️🔥
You two gorgeous writers capture love and fear in the most beautiful way. I'm so sorry to hear the news, sorry for the journey you are both on. But if anyone can make some sense, some laughs, some beauty, and tons of love from this, you can.