Oh, the indignity! (An update from Steve Safran)

I smell awful. There’s a sickly, syrupy-sweet smell I give off during these intense weeks of chemo that, perhaps, might be nice coming from a pancake kitchen. But coming off my skin, and combined with its other scents, the smell is terrible. My bodily emanations are mini-violations of the Geneva Convention. Three sets of sheets aren’t enough changes a week to keep up with my ability to insult the very loom that created them.

Or maybe I don’t smell awful at all, and it’s just that my nose has been so wrecked by chemo that I can’t tell the difference anymore. Who brought that wonderful, fresh spring bouquet in here? Get it out!

Smell, taste, sensitivity to sound and light– it’s all different now. I’m two cycles deep in the course of treatment for testicular cancer, diagnosed in May. The hope is that three cycles will cure me, but four cycles is a real possibility. A cycle is three weeks: Week One is chemo Monday through Friday. Weeks Two and Three are chemo just on Monday. So if you can follow that, please call me and tell me which days I have chemo. I’m a writer, not an air-traffic controller.

Last week was the worst. I was scheduled for just two hours. Instead, I got the deluxe package stay at the Newton Wellesley Hospital, spending four of the five weekdays there. The room was spacious and parking was ample, but the pancakes brought my Yelp review down by a full star.

Staying in the hospital means visitors. The downside to having hospital visitors is that you are poorly dressed for the occasion. You aren’t “business casual” so much as “hospital humiliated.” Much has been made of the indignity of the “Johnny” that cruelly ties in the back, except that it doesn’t. People, come on— Velcro! However, you don’t have to worry about doing your hair as it has abandoned you, and since your only method of cleaning your body now comes in the form of a giant baby wipe, you don’t need any time in the shower.

Everything about chemo turns your intestines into the Keystone pipeline project. It’s part of Big Pharma’s plan to sell laxatives, stool softeners, and other meds to let loose the dogs of war. And you will smell like said dogs once these things let everything loose. So there you are, visitors in the room, dressed like an extra from “The Walking Dead,” and suddenly the Senekot, well, works. I won’t go on, except to say I cranked the TV on my way to the bathroom.

About the smell, little could be done.

Just me and my hospital pals, heading to the nurse’s station…

Steve Gets Cancer… by Steve Safran

Britt’s blog gave me cancer. OK, maybe it didn’t– the science is still out on the matter. But the facts are this: I am now being treated for Stage 2C Testicular Cancer. I’m not acutely familiar with the shades of the term “irony,” but surely this is somewhere in the vicinity.

Testicular cancer is “a young man’s disease,” and for this, I am repeatedly told, I should be grateful. It is nearly 100% curable. “If you had to pick a cancer, this is the one to get,” an oncologist told me. That’s fine and all, but that’s like saying “If you had to be sat on by an elephant, you picked a nice, small elephant. Look – he balances a ball on his trunk!”

There is one question everyone wants the answer to when surgeons are removing your testicle, so I will answer it right now:

They do not replace your testicle with an artificial one.

I have been getting treatment for this since the beginning of May, and this is the first public notice I’ve given. This is a little strange for someone who can’t wait to post whatever ailment he has that day. On this one, however, I decided to go the old-fashioned route. I didn’t take to social media. I called my friends. It’s intimate when something attacks you from inside, and I needed to talk or, at the very least, privately email them. (So, maybe not so old-fashioned.)

Word gets out, anyway, and that’s fine. It’s not a secret. I have tons of great support. I’ve even given Britt permission to enlist her prayer warriors. That’s a first for this Atheist Jew, whose usual reaction to “We will pray for you” is “Please, don’t.” It’s not because I found religion, but because I realize that the faithful truly believe they are helping. I am not going to ask my friends not to do that which they believe helps. I am not going to ask my friends not to turn to that which comforts them when someone they love is sick.

Two weeks into treatment, I was struck with a pulmonary embolism. This is a blood clot that finds its tiny, sticky way into your lungs. The key sign you have an embolism is that you feel as though someone chose to put up a skyscraper on your chest and neglected to get a permit from you. That morning I took a shower and ran out of breath. That afternoon, I was back in the hospital.

As a result, I now get to stick myself with a needle twice a day with blood thinners. This is the fifth drug I have started taking since chemo began to ward off the side effects of cancer and chemo. My medicine cabinet looks like a Jenga tower.

I have many more dates with needles and chemicals. What you’re reading is a cutdown of a much longer rambling at least six times as long. For now, I’m out of breath. Britt’s blog is exhausting.

Me and Stevie:  Cancer-card-carrying pals.

Me and Stevie: Cancer-card-carrying pals.

Superheroes

Anyone rather personally touched by Cancer is forever changed. It’s left me scarred, occasionally scared, frequently sanctimonious, and quite blabby. Everyone approaches it differently. More elegant victims suffer it without blogs or incessant status updating. Me, I’m share-y. But every cancered parent I have met has at some moment uttered this mantra (prayer?) of thanksgiving: if Cancer must happen, then let it be me. No matter how terrifying those early moments during diagnosis, at least this was mine to bear. The children were safe.

But for thousands of parents each year, cancer isn’t theirs to endure, but instead—impossibly– to witness in the suffering of their children. Christopher’s Haven exists for them.

You might have followed a famous sports bet between adorable celebrities who promised to dress up as their superhero alter egos to benefit sick kids in the losing team’s town. But when the Patriots won, so did everyone; and Star-Lord and Captain America made appearances that did quite a bit more than lift the spirits of children with cancer. They brought attention to organizations like the Christopher’s Haven, blowing up their website in mere minutes with donations. These are things superheroes do.

Yesterday, a lovely lunch was held rather quietly in the lower level of the Loews Hotel. Co-hosted by elegant Sue Farrell and eloquent Diana Knightly, and emceed by the charming and even-prettier-up-close Shonda Shilling, this gathering honored Chris Pratt for his social media endorsement and real life contribution to Christopher’s Haven. There was an enchanting pediatric fashion show featuring current residents and alums of the Haven alongside local kids and a handful of adorable toddlers with famous last names from Fenway. And then… and then… a parent.

I’m not sure how you can speak to strangers about your little boy and his devastating brain tumor without sobbing or reverting to stock cancer tropes or feigned optimism. But this is exactly what one mom did: she stood in front of a room full of well dressed ladies and famous ball players and do-gooding Bostonians and told the truth. Daily life seemed impossible in the face of cancer treatment for their son. How would they commute two hours to the only hospital offering the only hope? Would it be possible to afford two homes or maintain some sort of family routine for the care of their other children? Adrift, terrified, and googling, this mom found Christopher’s Haven.

Within minutes this family had options. Even more, they felt immediately like they had a support network of other parents and children who could minister to their fears and hopes, share their tears and prayers, engage in actual fun, and create those forever kind of friendships. For only $30 a day, Christopher’s Haven provided them a home away from home and an opportunity for their son to have the kind of treatment that offers cautious optimism, but aims for a cure.

Cancer is around every corner for me lately. Two close friends with new diagnoses of invasive cancer and another who learned hers is metastatic disease followed the still very fresh loss of Lisa Bonchek Adams. The quiet in the wake of Lisa’s death is a daily reminder to many of us that it’s never really over. I cry whenever I learn someone must endure the drastic-surgery-and-go-bald kind of treatment. The scientist in me knows this is an impersonal effect of cells gone rogue, but the Churchy Jesus Girl falls to her knees to pray for miracles. Yesterday, the angry skeptic appeared and wanted someone to make sense of a world where children die because we cannot reliably control tumor growth.

The ultimate salve for these emotions is love. There was great love in that room of lunching benefactors yesterday. With a bit of time and money, places like Christopher’s Haven combat sadness with comfort, replace loneliness with friendship, and attack fear with community.

There is also great love surrounding my friends who in upcoming weeks will face a blur of appointments, mutilating surgeries, and terrifying, 3am googling of side effects and survival rates. For them, there may that tiny bit of relief that this is theirs to bear. But while they endure the Let It Be Me, the rest of us will rally to be their superheroes.

In the meantime, everyone in the Cancer world will appreciate these. If you don’t know what to say to your newly diagnosed friend, well, this gal will say it for you. And if you wanted to join in and help families who are enduring the worst cancers—those affecting their children—then please click on over here and be Captain America fabulous.

Love and prayers, friends.

LEMONS