By Tolson O'Toole
* The Game Rules
It’s my story, so I get to drive the narrative. I don’t like the C-word - it’s so laden. So I’ll just call it what I’ve always thought of it as:
Some might call what follows an autopathography.
I’m not a doctor, and this is not medical advice. But it is the story of how I, a healthy, yoga-addicted vegetarian, who’d exercised every day of my life, was suddenly diagnosed with an incurable metastatic late-stage cancer*.
I was a never-smoker, never-drinker from a long line of incredibly healthy people. I walked to work. I had good posture. And suddenly I had the karma of a flea.
It’s as though someone had broken into my home and flipped a plot switch - and I suddenly found a bunny boiling on my stove.
It was not a dark and stormy night. It was a beautiful, sunny day. I went for my annual check-up. My doctor weighed me (fine); took my blood pressure (fine); asked if I had any questions.
I lifted my arm and showed her my boing.
To which she said: hahahaho.
So it won’t kill me? I said.
It’s called a tendon, she said. Hahaho.
Without it, your arm would fall off.
But… should I be able to see it? I said.
The only reason you can see it is
because you don’t have fleshy armpits.
Well, there’s a phrase, I thought.
But, I persisted, shouldn’t I have one on the other side? (I know I didn’t carry my left arm over here in a case.)
All bodies are asymmetrical, she said.
So I paid my bill, and home I went. Asymmetrically.
And this is how my story began.
But the boing continued to grow. Must be all those handstands I'm doing in yoga, I reasoned. But: if it gets any bigger, it’ll need its own yoga mat.
So back I went.
The doctor looked up from her clipboard. What brings you in today?
I pointed at the boing.
OMG! She shrieked. That’s C_____ ! Why didn’t you come in sooner?!
Hahaho, I said.
Q. Describe your health.
A. Good - except for boing.
What followed was a battery of tests and other humilities. Most of which required me to constantly remove my clothing. At this rate, I thought, if I just grab a guitar and head to Times Square, I could give the Naked Cowboy a run for his money.
First up was an ultrasound.
Can't we go straight to a biopsy (to see if it’s malignant)? I asked.
No, the doctor said, first we have to do an ultrasound to “mark” where it is.
But you and I can both see it, I said, pointing at a bump which was beginning to look like a golf ball.
First things first, he said.
After the ultrasound came the biopsy. Which entailed shooting my boing with something that sounded a lot like a staple gun - loaded with what they called my “jewelry”: metallic biopsy clips (to mark the lesions internally). The first was in the shape of the breast cancer ribbon. Only once it was firmly lodged in my armpit, did I wonder: why is it shaped like barbed wire? Now is the time for comfort, people, not branding!
I heard the staple gun go off a third time, and looked at the doctor.
We’re testing several lymph nodes, he said. Looks like it's spread.
Are you saying - I might have lymphoma?
Let’s not jump to any conclusions, he said. We’ll send your results to your primary doctor.
So back I went to hahaho.
In she walked. Without taking her eyes from her clipboard, she summarily asked, How are you?
You tell me, I said.
She read me the results.
And just like that, for the first time in my life, I failed a test.
Try to avoid riding the scan-mobile.
Do you have any friends? My doctor asked.
What a bizarre question, I thought. Yes, I said, I’m about to go visit some in Switzerland.
I wouldn’t go, she said.
Why not? I asked. Will they have to send me home in a box?
Well, she conceded, you’ll be back in time for your first oncology appointment, but if I were you, I’d be too stressed to enjoy the trip.
I contemplated that nugget as I left her office, stepping over some discarded styrofoam coffee cups to get back onto the city streets. Where honking cars were spewing exhaust fumes. I’m opting for the Alps, I thought, with water so clear I can swim in it.
My phone rang: it was the oncology coordinator. He was assigning me to the head of the department. We think that’ll be the best fit, he said. Don’t overthink it, I told myself.
The next day, in a how-did-I-get-here kind of fugue, I followed the signs to “oncology”, a word I’d previously relegated to spelling bees. At first I didn’t get why I was seeing so much pink. Pink walls. Pink chairs. Pink scrubs. I half expected the Pink Panther to be lurking in the waiting room.
The receptionist took my insurance card and entered me in the system. There seems to be a problem, he said. That can’t possibly be your co-pay. That’s my co-pay, I said, I’m self-employed. Oooooh, he said.
A nurse approached and said, I'm here to take your vitals.
Do I get them back? I replied.
Uh-oh, I thought.
I met the head of oncology. I liked her enormously. (She was not wearing pink.) I like to think that if we’d met at a party (and not half naked while receiving yet more bad news), we would have been fast friends.
We called over to Medical Records, she said; we think your file was lost.
It’s not a mistake, I explained. All I’ve ever had are travel vaccines.
And a root canal, I added. That tooth was so infected - I’ve never known such pain in my life. Like do-me-a-favor-and-whack-my-head-off-with-a-crowbar kind of pain.
She didn’t seem interested in the tooth. She asked me to draw my family tree. How many family members have ever had boings? None, I said. (And this was so not how I’d hoped to distinguish myself.)
Her department had two more questions for me: was I Jewish? and had I ever taken The Pill? (Interesting, I thought; they don’t play that up in the ads.)
Could my cell phone have caused it? I asked (the boing was not far from my phone ear). We’re still awaiting more research, she said.
Is there something I should be doing? I asked. Like eating more broccoli?
We should probably all be eating more broccoli, she said.
In short, they didn’t know how long I’d had it, or what caused it, or why. Someone might have flipped my plot switch, but they’d lost the plot altogether.
Next up were a series of CT scans and bone scans. Adorned with bright yellow “Warning!” signs - the equipment emits radiation, which could cause… boings. File it under: irony.
As a nurse put a catheter in my arm, he said the boing cells were like hungry Pac-Men - eating up my healthy cells. They were trying to determine the exact size of the buffet - to know whether they could take the “bad” cells out with a “sniper” or whether they would need a “full-court press”.
He handed me 2 vats of barium liquid and told me to drink it - apparently to radioactively light up my insides. Now, I’m not someone who finds herself on a shortlist of graduation speakers, but this piece of advice I feel comfortable imparting: be wary of any beverage that has a picture of your intestines on it.
When I was done, he told me I could go have a cheeseburger. I’m a vegetarian, I said. Whatever, he said.
The MRI followed. The receptionist handed me a questionnaire that asked how healthy I was. Very, I wrote, except for boing.
Instead of ionizing radiation, MRIs employ magnets - that are so strong, they could fling a wheelchair across a room. They asked if I had any shrapnel in my body. I mentioned the biopsy clips. Those should be fine, they said. Tattoos? Tattooed eyeliner? Tissue expanders? (Add it to my Google queue.)
Everyone else fled the room. Lying on my back, feeling like Houdini strapped feet-first to a waffle iron, my thoughts were interrupted by the voice of another nurse over the intercom. He was wondering if we’d met before.
I don’t think so, I said.
Maybe in my other life, he said.
Which life is that, I asked.
I'm an exotic dancer, he said.
I'm in a claustrophobic tube, I said.
Cure - or Cause?
Conventional medicine loves militaristic metaphors: You fight cancer. You kill tumors. Then again, chemo is derived from WW2 mustard gas.
Be wary of any beverage that comes with a picture of your intestines on it.
Now, while all these tests were being performed, I could literally see my boing growing. In fact, it had sprouted a little baby boing, right below the mother ship. They scheduled another biopsy, took out their staple gun, and shot another metallic clip in my bumper crop.
More irony: they handed me a list of all the things I wasn’t supposed to do post-biopsy. No heavy lifting (fine), no cleaning of my apartment (even better), no yoga for 48 hours. But then they proceeded to contort me, first squishing me into a cold, hard, mammogram machine. Is this necessary? I asked. We need to record the location of the clips, they said. As my face was smushed against the plexiglass, my shoulder was yanked back, and I was told to bend one knee, I saw a sign that said “No selfies”. Really, I thought. There goes my Christmas card.
My coils were located very far back, the mammographer told me, as she tightened her armlock on me.
You’re my challenge for the day, she said, giving me another wrench.
Trust me, I thought, this is no picnic for me either.
I was now at greater risk for infection and was told to avoid large crowds. Like the humongous sports stadium across the street? I asked. Yes, they said, like that.
Crushing a tumor can raise the risk of metastasis.
Next I met with the surgeon assigned to my case. She seemed kind, and interested, and could have played herself on Grey’s Anatomy. When I first started practicing, she said, you would have been a very young person for this kind of diagnosis. But now I see so many people in their 20s and early 30s, the spectrum is shifting.
What’s causing the epidemic? I said.
* Sigh * everyone asks that, she said.
Seems like a good question, I thought.
The surgeon called back with the results of my scans. I was now sporting a collection of boings: the original (in my non-fleshy armpit), its concomitant baby boing, additional malignancies in my lymph, my lungs, and now they were seeing suspicious lesions in my liver. Which would require a biopsy with a capital B. Read: hospital gig.
Now, it’s good practice to avoid needing a liver biopsy generally, but I soon learned you should especially try to avoid them during the summer months, which is when they train the newbies.
Wonder why he’s putting the needle in there, I thought, as the newbie aimed a Mac Daddy of needles underneath the right side of my rib cage. (Which is the moment I realized I had no idea where my liver was.) And then I heard the word you never want to hear from a medical professional:
Ewwwww, he said.
He left the operating room, returning with a white-haired mentor, who took a look at the monitor and said: Hmmmmm.
I asked what the hold-up was. Turns out neither was sure where to put the very, very large needle - they didn’t want to puncture my lung.
At least our interests are aligned, I said.
At which, the compassionate Irish nurse leaned over and turned up the music.
Patience has never been my virtue, but I spent a lot of that summer awaiting results. When they finally did come back, it was confirmed: my boing liked to travel as much as its host.
This changed the treatment plan - they were no longer talking about “curing” my boing. I had been kicked down to the farm league where the team shirts read: trying-to-prolong-life.
Soon, almost 1 out of 2 Americans is expected to deal with cancer.
A man with his health has many dreams;
a man without it has just one.
― cited by Robyn Openshaw
How I spent my summer vacation.
Now, lest you think I took this news lightly: I recently came across the notes I took when I first received my diagnosis (which, no matter how well someone delivers it, does not exactly arrive in bubble-wrap). My notes are so shaky they look as though I’d written them with a seismograph while straddling a speeding bullet train. (The diagnosis did, however, demote all trivialities to their rightful place.)
There was one more test before they could begin palliative care: an EKG (to make sure my heart could withstand the treatment). I reported for duty - and was promptly told they would need my credit card. But I’m all paid up, I said. Not for this you’re not. How much is it? I asked. $3000 the receptionist replied. Well that can't be good for my heart, I thought.
I mentioned my steep co-pays to my oncologist. We can set you up with a financial planner, she said. Especially given the new treatment plan.
The original plan had been 12 rounds of chemo - to shrink the boing, followed by surgery and radiation. The new plan had an addendum: chemo for the rest of my life. However long they could extend it.
Isn’t there an alternative? I asked.
No, she said. Not even in Europe. I'm glad you got to go to Switzerland, she added. Per the new plan, that was the last trip I’d ever take.
Seriously? I said.
Well, she conceded, maybe if we had enough advance notice, you could schedule a long weekend away.
She had one patient, she told me proudly, who was in her 14th year of chemo. I didn’t know what to say. She, on the other hand, was undeterred.
I’m not going to tell you you have 9 months to live, said my oncologist.
What do you do when all the odds are against you? You keep going.
― Tina Turner
Surprising fact: Oncologists are allowed to profit from the sale of chemo.
You'll never travel again, she said.
"Now You're a Chemo Person."
I was to receive a rotating “cocktail” of 3 different kinds of chemo. (But, frankly, that word scared me, too, so I called it “the chair”.) I learned a lot of things my first day in that chair. One of which was that my cocktail was so toxic, the nurses were required to don gloves before attaching the bag to my IV drip. Yes, that same cocktail they weren’t allowed to touch was given to me intravenously.
My oncologist had informed me that had I been diagnosed just a few years prior, I would have been particularly bad off, since my boing was hormone-resistant and they had not yet discovered my particular targeted drug therapy. It was to be administered in conjunction with another drug originally derived from a yew tree. As the nurse took out her gloves, I mentioned the tree. Yeah, she said, it used to be from a tree. What’s it from now? I asked. They found a synthetic equivalent, she said.
It must be said, the nurses were extraordinarily nice. Nice-nice. Like they-were-the-kind-of-people-who-had-invented-soup-kitchens nice. They brought me pillows. They primped said pillows. They lifted my feet. They brought me warm blankets. It was how I’d always pictured first class on an airplane - except without the flight. And landing, of course, with fewer white blood cells than at take-off.
That first day, one of the nice nurses appeared to read me the list of possible side effects. Settle in, she said, this’ll take a while.
I’m not exaggerating when I say it might have taken an hour. Bleeding. Bone Pain… I awoke as she was nearing the end. And then, she said, there’s infertility.
What? I said.
Is that a problem? she said.
Well, I wasn’t planning on leaving here the Octamom, but that seems like a biggie.
And she wasn’t done yet: apparently, I was nuclear.
If you have sex, she told me, you could be passing the chemo (read: poison) on to your partner. (As if my social life needed any more impediments.)
And, she said, do you have a thermometer?
No, I said.
You don’t have a thermometer?! She was shocked. Get one! If you spike a fever, you need to call 911 immediately. And tell them you’re on chemo. You’re no longer like everybody else; now - you’re a chemo person.
The following week, I returned for Round 2. I was in a grey corridor of people, each attached to an IV drip. There were no windows to the outside world - and not a lot of privacy. Occasionally I could hear someone crying. Or nurses fielding calls about nausea medications. Whenever someone had to use the restroom, you could see them shuffling down the corridor, dragging their chemo cart behind them. And the chemicals coursing through our veins - chemo cocktails, steroids, and for some, anti-anxiety meds, made us all extraordinarily dozy.
A social worker unexpectedly poked her head behind my curtain. I heard you had some concerns, she said. I tried to wake up. I tried to sit up. I tried to remember having a concern that would send a social worker after me.
I landed on this: I heard I might lose my hair.
Is that important to you? asked the social worker with hair down to her waist.
What I wanted to say: hey, Lady, not for nothin’,
but when Britney Spears voluntarily shaved hers, every tabloid trumpeted it as a sign of psychosis.
Instead, I offered her a snack from what the nurses had offered me: Cookies. Boxed juice. Those nuclear orange crackers with peanut butter that come wrapped in crazy glue.
Each week I was required to get my blood drawn. I was getting poked and prodded with so many needles, I was beginning to feel like a voodoo doll. I asked if they could tell me if my iron levels were low. No, they said, we don’t test for that. Vitamin deficiencies? Nope.
What do you test for? I asked.
White blood cell count, they said.
Ah, I thought, medical malpractice concerns: they want to know if the treatment’s killing me.
Hair today; gone tomorrow: Sanity or Vanity?
Imagine the worst Bad Hair Day you’ve ever had.
Then string 730 of those in a row.
My third week in the chair, they had me fill out a medical proxy - whom to contact in case I died. They also encouraged me to meet with a geneticist.
Now I had just read a fascinating article in Yoga Journal by Amie Valpone - about how she had almost died in her 20s - how a bevy of doctors could not figure out what she had - some thought she had leukemia and had given her a week to live. She finally self-diagnosed herself, and cured herself by giving up 13 food groups - not just 13 foods, but 13 food GROUPS. Wow, poor thing, I thought. (A week later, I was assiduously following her eat-clean diet. More on that later.)
Amie Valpone mentioned something else: that she had a genetic variation known as MTHFR (methylenetetrahydrofolate reductase) that basically makes it harder for her body to detox - so it’s more sensitive to toxins. And that 35% of Americans have this same mutation.
So I met with that geneticist. She showed me a pie chart. There was a teeny, tiny little sliver of pie (only about 5%). This represented how many boings are a result of genetics.
So the whole rest of the pie - that really big 95% piece, I said - what causes those boings?
We don’t know, she said.
Did she test for MTHFR? I asked.
What’s that? she said.
I thanked her for her time and left to pay another bill.
Now it was around this time that I received a Divine Intervention. As with many of my Divine Doorbells, its ringing came in the form of a phonecall - from my mother.
The long and short of it was this: my Mom said: You need to speak to Jane.
Never you mind that my mother had never herself spoken to Jane (she’d never even met Jane). But that’s another story. My Mom gave me a phone number and I called it. And Jane invited me to her home, which really, was like going through the door in the Lion, the Witch and the Wardrobe.
Turns out Jane had been a conventionally trained RN. But she’d been working with more and more “alternative” practitioners, and, while she wasn’t allowed to give me medical advice, she had some suggestions she thought I might like to explore. Jane wrote them out on a little piece of notebook paper. I still have that piece of paper. I’ve always thought of it as Jane’s List.
But before getting to the List, Jane wondered if I wanted a cup of chaga tea. Sure, I said. What I thought was: what the heck is chaga tea?
Chaga, Jane explained, is a kind of mushroom. And while I’d always thought of mushrooms as vegetables, they’re actually “adaptogens”. They pre-date even the dinosaurs - they’ve survived so long, because they’ve learned how to adapt to their environment. And they can pass that adaptogenic power on to the humans who consume them.
So I drank the mushroom tea. And it was delicious.
And Jane unfolded her List. I share it here with you.