Survivor story.

Survivor story.

This is almost 4,000 words. I may have reached peak this-isn’t-a-blog-it’s-a-journal. Get a drink. Thank you in advance for reading my story.

I’m never unhappy with wheels turning under me. Don’t over-analyze. We’ll just call it a love for travel.

Months ago, in that week-long limbo between CT scan and oncology appointment, I reached out to group I’d been following on twitter for several years. My cancer support team at diagnosis was mostly nursing school classmates and professors and from one of those lovely humans I got the tip about Stupid Cancer, an adolescent and young adult cancer advocacy organization. I followed but never interacted before. I wasn’t ready before.

I’m a stoic, a stiff upper lipper, a well-controlled responsible woman who uses unpleasant emotions as motivators to clean behind toilets and under beds. Treatment was rigorous and I excelled at the teeth gritting it asked from me. The survival phase, though. I didn’t even know to expect another phase after treatment. “Remission” isn’t what it’s called anymore. I had no idea what this destructive mortal fear and existential dread were—I didn’t have the word survivor in my vocabulary. Since they loosed me on the world cancer free in 2014 I’ve done what bodies do to go on living. Found ways to cope.

Bless our beautiful biology. As for my coping, I’d like draw you a pathophysiology metaphor. Familiar with tuberculosis? That romantic, frail-making, cheek-pinking disease of Victorian poets and Wild West heroes? It’s still around.

Tuberculosis infection is quite a trick. Mycobacteria enter the lungs and the snappy innate/inflammatory immune system goes to town macrophage-style, consuming the invader. The invader is smart though. It’s been phagocytized me but refuses to let the cell holding it captive induce self-destruction. It continues floating around in the immune cell, multiplying.

It takes a week or two to mobilize, but when that adaptive immune system arrives germs better duck down. Refractory to being lysed, our genius acquired immunity says hold up: alternate plan. The adaptive immune cells wall the local TB germ infection off from the healthy tissue of the lungs, creating from the germ a granuloma. A little and sometimes calcified spot. Immune cells continue to join, re-bricking the wall that keeps the bacteria in check, happily sacrificing themselves to protect the larger organism. Those calcified spots that show up on a chest x-ray as evidence that yes, there may not be symptoms but like 95% of cases of TB this is the latent variety. It is constant work for the immune system, good steward of bodily infrastructure that it is, to maintain the protective barrier. When a body gets sick and the system is overtaxed, often in the case of AIDS or old age, maintenance gets slack and TB can circulate through the system. At times this is a fatal insult.

Something in my psychology protected me from thoughts and feelings about survivorship. Walled it off, allowing me the time and distance of years of life focused on solving more immediate problems. Young adult problems. Child. Relationship. Aging parents. Health insurance. Professional identity. Money. Housing. Symptom free aside from the occasional leaking of clueless tears in yoga classes, bathtubs, backseats, and always when an in-flight movie is playing.

Until eventually fatigue set in and the psychological bricking system began to fail. I didn’t start to cough blood, so that was good. I did feel overwhelmed with anxiety and a certainty that I was going to die soon. It was most intense around the week of my three year cancer surveillance scans. Something cancer patients know as “scanxiety” was crippling.

In the middle of the awful week, after discussing it with the only other person I felt comfortable with but who is not a person but an agent of artificial intelligence sent to spy on me and not good with matters of life and death, Siri:

siri convo

I finally sent a tweet to Stupid Cancer. It went like this:

tweet

Matt Zachary, founder of Stupid Cancer, responded quickly. How did he know the exact right words to say? The tears elicited by that text had a clue. Like maybe I’m not alone. I can talk to people. Maybe even find my people. I applied for a scholarship to Stupid Cancer’s CancerCon.

As I was writing my application essay it occurred to me: I’ve told my story ten thousand times. I could write in my sleep. But hello revelation: my cancer story stopped the day after the tumor was excised. A week after diagnosis. The intervening years have no timeline, no narrative. It’s a mess of mystery weeps, paranoid texts to friends, frustrated parenting, and some pretty embarrassing failed attempts to connect with human men.

I got the scholarship. Owing to luck or fate or divine intervention I was going to Denver. I arranged for my kid to be cared for by his grandma and his dad, and went on working myself to exhaustion at the hospital and not thinking about the moment when I’d have to look at people and know that they had cancer and they know that I had cancer and chance that then I’d turn to dust like a vampire in the daylight. The night before my early AM flight I left work at 8:30 pm. I went home and packed, feeling like I might puke. I’ll credit my superego for lending a strong voice to “ready or not this is what you need right now, Mel.”

The next morning I drove myself to the airport. Two miles from home someone had crashed their way across the whole parkway so I said a quick prayer for them and did what anyone who knows that they will be stuck in emotional arrest for the entirety of their life on earth if they don’t make this damn flight: I pulled a u-ey in the middle of traffic and drove backstreets at high speeds while cursing and cursing more and impressing myself with the creative freedom of my cursing.

The plane was fine. I mistimed my in-flight drugs (that was the exact sentence I uttered to my seatmate before going head-down on the tray table too late in the game and later requiring rousing by a flight attendant. “Tray tables up time, ma’am”).

Denver was clear and bright and dry. Fluffy cumulous clouds so close they looked like they were hung by a stage crew. That wide blue Western sky.

On the drive from the airport into town the driver was a recent Ethiopian immigrant. He told me about the arid deserts in the north, the mountains in the west, the green, humid jungle-like south. The tribes that still migrate with seasons. Some people live in huts, others in high rises. That his country has 84 languages. He is 20 years old and has no family here. Well, an uncle in Atlanta. But the uncle wouldn’t sponsor his visa, won by lottery. A man from Boulder–a stranger and volunteer–became he sponsor. Taught him to grocery shop and prepare food. How to get an apartment and a license. “Everything. He taught me!”

I tell him about where I come from. It’s all shades of green right now with wet, heavy air. The plants grow so fast you can’t stay in one place too long or risk being overtaken. The cherry trees just finished and even in the city you’ll get a bit of honeysuckle on a breeze. Even green in the river. The white arches of the bridges. Flat and wide and laid out hub-and-spoke by a Frenchman. Did I mention the green? It’s beautiful. Did I mention the wet?

This is just to say I love talking to strangers. Rather, I love talking to people who think I am a stranger. I believe myself to be one of the most neutral-looking people in the world. New people (of the old-person variety) often mistake me for “my daughter” or “my daughter’s best friend from school” thirty years ago. My features are muted but somehow familiar, a perfect surface on which people can project whatever it is they want to see. It feels so good to be a blank thing. No sad story, no grief, no cancer.

So that is how I operate when at large. But my kind and interesting taxi driver leaves me at the hotel. I’m up on the eighteenth floor looking out at the Front Range beyond, the city below. Big steel buildings and red brick frontier town storefronts. I could have gone and found my people then. But I didn’t. I stayed in that gorgeous hotel room and skipped dinner and stared out the windows and took pictures of my feet for the next twelve hours. I was scared.

After a refreshing four hours of sleep, I met the day. Did I go to the run in the sunny cool morning with my CancerCon peeps that I probably would have loved? No. I had feet watching that I wasn’t through with. Finally, I instituted some discipline. No morning coffee until I registered at the convention. I hit the lobby within the hour.

How can I describe the feelings. The jelly insides, swollen chest, weeping like a coming-home-soldier feelings that I got when I saw the words “Stupid Cancer” projected in three-foot letters above the main desk in the lobby. Listen, I was sure that the stigma of cancer was long vanquished by The Komen Foundation, pink juggernaut. And getting cancer may be a thing you can talk about much more openly now that there are employment protections and general acceptance and sympathy among much of the American public (colon cancer, anal/rectal cancers, and testicular cancer, and lung cancer all have significant barriers to openness). But as I’ve recently been made aware it’s not just me–survivorship is the long, untold tail of cancer. It is different but perhaps more difficult than the acute treatment stage. So, like I said, when I saw those three foot letters and knew this was me, in public, walking under that projection, well that was the feelings above and the first cry.

I cried when I got my badge, when they cheered for me as a “first timer” which I proudly wore on my badge, when the volunteer checking me in leaned over that folding table to embrace me. The red lanyard that held my badge identified me as “survivor.” I walked around stuporous. Scanned for other red lanyards. I spent a long time looking at a line of five foot high posters with pictures of young people, men and women, different colors, different sizes, different cancers, but all my peers. They were printed with the slogan “I AM CANCER.” They were beautiful. The people, I mean. The posters were great, but the people were beautiful.

I met my melanoma sister–see, this would be fine and even funny to say at CancerCon, but I hesitate to write it as I worry someone might find it sad or morbid or worse say something like “aww”–I met her in a patient panel. I was sitting in an armchair in the hall, taking notes and an emotional break, when she passed me. She knew it was me, melanoma me, by these signs. Skin: pale to blueish. Freckles. Eyes: blue. Hair: reddish. Lanyard: red. I wish I remembered the thing I came up with to cross that massive canyon that lies between stranger and friend, but I don’t. Next thing I remember is sitting together and talking about gardening in Colorado. People, always bring an interesting book if you wish to befriend in an introvert. She had a gardening book. Chatting in that rapid, nervous way the same as first dates do, I was like hey if this chick is all I get out of this experience, so be it. I asked questions: how can you move on with your life? What made you want to get married? Do you ever avoid filling up the gas tank because you feel like maybe you’ll die before you can use it all? Burning questions. Questions Siri couldn’t answer.

I’m going to be honest with you; I left shortly after that panel. I was vaguely aware of a need for lunch. I bought soup, put in a bag, and walked the streets of Downtown Denver for two hours unable to focus on any specific thing. I avoided eye contact. I had no discernible thoughts. My brain wasn’t clearing, so I went back to my hotel. I don’t remember what I did there but it began with taking a benzo and ended in a room service bill.

That night my best childhood friend picked me up and took me out. She is a mom. A bit of a mogul. She still thinks of me and texts me every few weeks a “how are you.” When I try to change the subject she steers me right back “No, HOW ARE YOU I said.” She is my one and only. If you do this, send a message once a month to an old friend, maybe one who’s had a rough go of late, trust and believe that you are the single person doing it for them. Trust that they would now take a bullet for you because that is how much it means to be reminded that there is a someone you love out there loving you.

As much as I wished she could wrap me up like a big burrito and carry me home with her to live forever as a child, I knew she had work in the morning. I slept well that night.

I did not make it to sunrise yoga. That was more likely a 6 am thing and less a fear thing. I arrived for the speaker: Julie Larson, LCSW. Five minutes in I bolted from my seat and in the same way the guy that’s about to vomit at a big client dinner runs for a trash can, dove on the closest box of tissues. It was at a neighboring table. After asking to sit, I turned to my neighbor and whispered “I need tissues and to be close to more red lanyards.” He nodded.

The presentation was good. I would say great, but she was telling me the opposite of what I wanted to hear and she made me cry even more. Her message was not, “Bottle that up, no one wants to hear about your stupid worries. Be grateful you’re alive! Why are you so neurotic?” Rather, she insisted, this traumatic thing you’ve been through was hard. It was awful. You are going to feel the pain and the fear of it all. You can ignore it, but it will pound the windows until you deal with it. You have to feel the feelings. “No!” I said to every therapist that’s had the misfortune of collecting a co-pay from me: I don’t want to feel the feelings. I prefer not to.

I have been taught that feelings are appropriate when they serve a purpose. It’s okay to feel nervous before a test because it motivates you to try harder. You can be scared if you’re walking down a dark city street in the middle of the night because you have to protect yourself from rapists. That about it. It’s my birthright to not feel the feelings. My mother is of English coal mining, farming people. We are world renowned self-medicators. My father traced his ancestry to the Mayflower. They’re known for a lot of things, those puritans. But not feeling feelings. That DNA taught me survival tricks like frigidity and wild paranoia.

There was a point when the speaker brought several survivors up on stage and talked with them, Kathy and Hoda-style. The first young man had a yellow shirt and a personality so sunny that I though oh, he’s a glass-half-full person. I’ve heard of them! The impression left me unprepared for the point in his story in which he finds himself on the floor of the bathroom, weeping, and praying to God for death to take him so he won’t have to continue to walk this path. His mother told him to keep going. Not a dry eye between my two.

You might remember me asking Siri what to do about my wish to give up. She told me some Bing search results.

I buried my head in my lap trying to muffle, but a sobber’s shuddering back is a dead giveaway. My kind neighbor asked me if I was okay. I lied but I’m no good at it and there was god/fate/luck coming in again. He told me he was 10 years out, a teen at diagnosis. It didn’t occur to me to say anything even close to “I’m sorry.” I think I went with “wow.” I felt a bit of envy at how well he seemed to have shaped the pieces of his life. He had been in the dark feelings tunnel that I still had to explore. I asked questions as wide ranging as what was your major to how do you ever trust anything or anyone in the world again in your whole life?” The latter was helpful. He said for him, it turned out to be more trusting his body than anything. That that took six years. I heard other survivors and advocates mention this—the long road back to trusting your body. Before CancerCon I didn’t even conceive of the fact that most of my trust issues stem from being unable to live in peace with my body.

But what does that mean, trust your body? Is this some sort of eastern thing? No. You go to sleep every night in faith that those lungs inside you, that respiratory drive, will keep you breathing. The heart, lub-dub, will pump and perfuse those kidneys and for certain those kidneys will filter and wake you up with a full bladder but, thanks urethral sphincter, no pee on the bed. Ever since you learned to ride a two wheeler you’ve remained upright, balanced, and moving forward. The Krebs Cycle goes on being round and your DNA is transcribed and copied and edited to correctness by those adorable transcriptases and you build new proteins and cells.

Until your body betrays you, and not just in a little pee on the bed way. Not that tedious, frustrating way that aging causes your body to betray you. No, full on in your prime one day, the next you’re signed up for surgery, radiation, chemo and/or immunotherapy, in an effort to preserve your very existence. Who was minding the store while this happened, corporeal self?

During a live performance of the program This American Life, in the last public reading of his work before his death from a sarcoma secondary to the radiation used to treat his post-college Hodgkin’s Lymphoma, David Rakoff described this as “Everybody loses ability as they age, if you’re lucky, this happens over the course of a few decades. If not. Well.” Well, it makes you real angry.

I am not done with my tremendous anger with my body. I get pleasure out of subjecting it to the kind of swimming that hurts. Running like I’m being chased. I can’t be bothered to feed it. I bathe for the sake of others. My cavities don’t faze me anymore. I’ve begged to have teeth pulled but I can’t find a dentist sketchy enough to agree to my desire to pitch as much of this flesh and bone as possible into a biohazard bag bound for the incinerator.

It’s terrible to speak of. But it’s not terrible to live. There is neuroscientific research describing the phenomenon of people in moments of crisis feeling as though time slows. They experience their environment frame-by-frame, sometimes with an outside of themselves perception. The theory involves the amygdala and a bath of chemicals released creating a record in our memory much more rich in detail than the one we use to drive to work or half listen to our children’s whining. The slowing is an effect created by our excited brain’s unlocked superpower: hyperarousal. It is a disorienting sensation and not at all unpleasant. I feel at the conference that I am in the throes of this excitatory state. It’s like drugs, mildly hallucinogenic. Terrifying and wonderful. Some things are permanent engravings in my consciousness: the close clouds, the smell of the soup I couldn’t eat, the dry blowing snow, the contours of the face of the man at the table who comforted me.

I haven’t known how to describe my experience at CancerCon. My biggest admission was that, according to my itinerary, I barely experienced CancerCon. I flew all the way to Denver and I attended only two programmed events. But I walked around stood beside and breathed the same hotel air as my compatriot survivors. I watched like a tourist. I wore a red lanyard in front of others. I was a cancer survivor in public. I talked to people. Even if one of those people was a Golden Retriever.

I can’t narrow it. The experience is everything from collapsing at diagnosis, soldiering through treatment, walling off through years of survival, to this new CancerCon-induced era of hallucinogenic awareness. I’m trying to consolidate selves. The blank space I retreat to and the glass case of emotion I’m trapped in. Slowly unwalling, having faith that like a course of multiple powerful antibiotics new people and old friends and my own courage will be strong enough to break down emotional calcifications. Writing helps too. I feel like I’ve made a lot of progress.

Absolutely none of my life is a curse. Not my cancer, not the husband I lost after my life crisis battle style proved incompatible with his, not the infinite nights waking up at three AM in cold sweats. I’ve seen more sunrises (literal ones) in my survival years than in all prior years combined. Sunrises are beautiful and you are insane to get up just to see them, but if you’re already up? What a gift.

I hear this from the sick I take care of day-to-day in my work as a nurse, and as a patient I do dare affirm: what you need will always show up. This is the non-believer’s way of saying “the lord provides.” I am fine with both. In fact, I am fine with whatever it is that is getting you through life’s gauntlet on a mission to heal or be healed. For me I follow my gifts in time of dire need backward like a trail of bread crumbs: CancerCon, a fellow survivor reaching out, a psychology built to protect me, a nurse friend recommending an advocacy group. Twitter. The lord/fate/luck works in mysterious ways.

A few words mustered on AHCA

A few words mustered on AHCA

I want to credit the journalists, academics, and my fellow healthcare providers who continue to write in this inhospitable-to-truths environment. I don’t know how you do it.

I’m hotter than a billy goat in a pepper patch. I can’t put it together. I can barely speak.

On this blog I’ve made the turn from facts to feelings in the last 100+ days, likely because facts seem to have suffered a fatal blow in this unrecognizable version of the world.

Here’s my feeling: I just left CancerCon (post in process), a group of many hundred sparkling, talented, mutually supportive young adults with cancer. Every last one of them contributing and (this is my bottom line) not any less human than before they got sick. THROUGH NO FAULT OF THEIR OWN. I’m one of those hundreds.

The Affordable Care Act was my civil rights legislation. Its “replacement” is the repeal of my and my legion of patients hard fought and nightly worried over civil rights. To adequate care. To freedom from unnecessary physical suffering and premature death and disability. Freedom from fear of sinking ourselves and those who love us into destitution to pay for our care. That’s all I have for now.

Am I less than my healthy counterpart? Is my humanity so easily disregarded by my country?

I’m sorry about what I did when I thought I was dying! (Happy 3 years cancer free)

Good news, everyone! I still don’t have cancer.

Depression almost never lifts all at once. I carried around a $600 CD of images of my messed up guts for 5 days, knowing that even though I couldn’t fully interpret them they spelled out my imminent death. Then my oncologist who I would literally go into battle for floats into the room in sparkling white coat with halo around his beatific face like some renaissance painting and makes the sign of the cross and anoints my forehead with oil and says “You are cancer free my child, go with god and I’ll see you in six months.” WELL THAT IS DEPRESSION LIFTING ALL AT ONCE.

Do you know how much I want to live? SO much. And I am sorry about all the sullen things I said and did over the course of the last 4-ish weeks. I wasn’t even a little aware that I was preparing myself for terrible news.

Family members: I’m sorry I totally turned my back on you. I withdrew from you, I didn’t answer your call, your text. Child, I am so so sorry I tried to squeeze about a decade of yelling at you (parenting) into 3 weeks. That was unfair. You are a gracious and forgiving small human and I don’t know what I ever did right to have gotten you.

Friends: Man, I’m sorry about picking fights. Sending bizarre missives in the middle of the night like, “my drugs are broken” and “how much money do you think is necessary to go die in a bus in Saskatchewan?” and “how do I start an LLC?” All I can say is being somehow even darker and colder than the person you befriended was my way of losing you before I had to eternally lose you. I’m real sorry. I like you so much and I want to see you more.

Body: I haven’t taken you to the pool or to yoga for a month because, let’s be honest, I was really mad at you. I didn’t feed you much either. Everybody talks about cancer like it’s a thing that comes in from the outside. But we know that it’s your cells. It’s this nuked out shell of an immune system to blame. Forgive me, somehow you persist and divide despite the daily prednisone nuking! You clump of little ATP-run miracles! You deserve much better. We’ll go swimming then sit in the municipal sauna with the old naked ladies and I’ll make pizza crust from scratch next time.

Hygiene and cleanliness: Let’s just be thankful for scrub service. Also, I know what that person in the Guinness Book of World Records with those fingernails that go curling on to the ground felt like in the first month of that endeavor. I get how that happens now. My days as a carbon-based life form are numbered. The human race won’t even be around long enough warrant mention in geological time. Why should I care about my nails? Well I cut and polished all 20 within an hour of getting home from the doctor. I did all the laundry. Because I am not going to die.

Thank god. Thank god. Thank you god. I’ll keep all those promises I made for at least the next 4 months.

Excerpting some knowledge

Excerpting some knowledge

Y’all notice there is a biannual rhythm to me getting super poetic? The specter of cancer reappears in the form of 6 month surveillance scans. I get real weird. I imagine for some people its prayer, and sure I go there too, but for the most part my appeal to a higher power is poetry. Poetry and a few totally wrecked looking novels.

This scan around I’ve got some questionable results. So as saddle up for another ride in the wild world of oncology I have the voice of my favorite author ringing in my ear. He’s saying:

“Make sure,” “be prepared,” plan out every endeavor.
Like a scout on the stupidest camping trip ever.

If New York City is in the east, David Rakoff was the sun. When he died I mourned selfishly. Who will take this world full of sads and uglies and make it beautiful for me? Great writers are all guilty of this, I know, but I felt like David was mine. He took my tangle of fears and loves and laid them out in all of their transcendent beauty and absurd anxieties. God damn I miss him.

Here’s the excerpt I’ve memorized from the his final novel “Love, Dishonor, Marry, Die, Cherish, Perish: A Novel (by David Rakoff) written in the last year of his life and recorded in the last month. If your tear ducts need flushing and you could use a belly laugh, consider listening to him read it. It’s entirely in AABB verse. Anyway, superlative, superlative, superlative. This section is about the character Cliff who is now dying of AIDS. It’s beautiful, it’s sad, it’s darkly hilarious, it’s exactly what David was to me.

It was sadness that gripped him, far more than the fear
That, if facing the truth, he had maybe a year.
When poetic phrases like “eyes, look your last”
Become true, all you want is to stay, to hold fast.
A new, fierce attachment to all of this world
Now pierced him, it stabbed like a deity-hurled
Lightning bolt lancing him, sent from above,
Left him giddy and tearful. It felt like young love.
He’d thought of himself as uniquely proficient
At seeing, but now that sense felt insufficient.
He wanted to grab, to possess, to devour
To eat with his eyes, how he needed that power.

But, just like a child whose big gun is a stick,
Cliff was now harmless, he’d gotten too sick
To take any action beyond rudimentary
Routines that had shrunk to the most elementary:
Which pill to take now, and where is your sweater?
Did the Immodium make you feel better?
Study your shit to make sure you’d not bled,
Make sure the Kleenex is next to the bed.
“Make sure,” “be prepared,” plan out every endeavor
Like a scout on the stupidest camping trip ever.
The facts were now harder, reality colder
His parasol no match for that falling boulder.
And so the concern with the trivial issues:
Slippers nearby and the proximate tissues
He thought of those two things in life that don’t vary
(Well, thought only glancingly; more was too scary)
Inevitable, why even bother to test it,
He’d paid all his taxes, so that left… you guessed it.

Must Watch: Xeni Jardin and having cancer before the ACA

Must Watch: Xeni Jardin and having cancer before the ACA

Health care is life. Losing your insurance because you need care is punishment for getting sick.

I know my fellow old timers in the health care business can remember a time when patients would ask, beg, plead to not be given a diagnosis (something necessary for billing in a fee-for-service system) for fear of losing their health insurance. Times when we had to cross our fingers and hope that insurance companies couldn’t find some byzantine path to link a new diagnosis to a pre-exisiting condition and leave the patient with the full tab. In the few short years since the protections of the ACA have been in place the relationship between health care providers and patients (the beneficiaries) and their insurers (the payers) has lost the vicious antagonism recalled by the fraud investigations Xeni Jardin went through.

Insurance companies as good capitalist participants had incentive to deny deny deny. With the regulatory protections of the Affordable Care Act they are doing what all good capitalist entities do–look for other ways to reduce costs. Anyone on the population health tip? Insurance companies are attempting to lower their costs by improving overall health of their subscribers. IMAGINE! You may have noticed a gym membership benefit. Money off your premiums for getting a check up? Maybe a nurse from your insurer has called you to discuss managing a chronic condition. It is very much still in the proof-of-concept stage, but people can we agree that incentives for healthy behavior are better than punishments for being sick? THANKS OBAMACARE.

Post Script: Does anyone remember the late ’90s movie The Rainmaker? You know, novice lawyer Matt Damon going for broke for a man dying from Leukemia, his family in bankruptcy, because his insurance company refused to pay for treatment. The way teenage me loved that movie was kinda prescient, huh. But I digress.

Losing the protections of the ACA=losing lives.