Memes are a Cancer on Cancer… by Britt Lee and Steve Safran

Hey. Hiya. Britt and Steve here. She had breast cancer. He had testicular cancer. And we’d just like to say: STOP THIS:

“Every person has 1000 wishes. A cancer patient only has one wish, to get better. I know that 97% of Facebookers won’t post this as their status, but 3% will. In honor of someone who died, or is fighting cancer – post this for at least one hour….”

Steve:

Seriously. What are you doing? Facebook is where you’re going to take your Stand Against Cancer? And you’re going to do it by posting this trite, ineffective and simplistic post– for one hour?

This is another doozy:

“I deleted a lot of people recently and continue to do so based upon behavior and content! Now I’m watching the one who will have the time to read this post until the end. This is a little test, just to see who reads and who shares without reading! If you have read everything, select “like” and then copy and paste this text on your profile. I know that 97% of you won’t share this, but my friends will be the 3% that do. In honor of someone who died, or is fighting cancer or even had cancer, copy and paste. October is Breast Cancer Awareness Month!”

So, you’re deleting friends if they don’t live up to your reposting challenge? Facebook doesn’t work that way. Not everyone sees everything you’ve posted. It has an algorithm that determines… oh, fuck it. YOU’RE KILLING OFF YOUR FACEBOOK FRIENDS IN THE NAME OF CANCER AND YOU DON’T SEE THE IRONY.

 

Britt:

When I read these posts I want to comment, “I have 1000 wishes, and 999 of them are that you’d stop re-posting this” or “If you truly cared about cancer, you’d employ a colon properly and stop misusing exclamation points.” But I don’t. Once I typed, “This just made my cancer just come back” but immediately deleted it, fearing certain backlash, or scaring my parents. BUT IT WOULD BE SO FUN TO TYPE THAT.

Nearly four years ago I poked fun at one of these copy-and-paste Facebook Calls to Care on my cousin’s page. Because he is probably the nicest boy on the planet, and we don’t share oodles of social media contacts, it seemed a safe place to have a small conversation about it. He admitted that 1. He does, actually, care about cancer, 2. He had no idea these sorts of things were already clogging the interspaces, and 3. He felt a little pressure to repost, frankly. Still, I felt kind of shitty about not just letting it go.

Which is crazy! Why should I, a person who actually had cancer, feel guilty about mocking memes that not only trivialize that experience, but also trigger its memory?

 

Steve:

“Guys, we’re just trying to raise awareness.” Good. But you’ve got to know that Britt and I are at Maximum Awareness. We’re at 11. Wanna help? Raise money. Raise a whole lot of money. Give it to programs that treat people with cancer, or better yet, give an unrestricted donation to a hospital that treats all crap diseases. Cancer gets enough PR without your one-hour post, but there’s a lot of other shit that can kill us and it needs research.

Look, I get it. Cancer makes everyone feel helpless. Maybe there is something you can do. So you pray. You go on a walk to raise money. You share your cancer-ed friend’s blog (thanks, guys). These are helpful, kind and loving ways to respond. But, as your formerly cancer-ed Facebook friends, we have to tell you: these memes are mean.

Delete old acquaintances. Thin the herd, by all means. We’re there with you. Why did we agree to “friend” that person we met that one time at… where was it? Crap. Chemo brain. Anyway, delete away. Just don’t do it IN THE NAME OF CANCER.

 

Britt:

Last weekend another re-posted meme splashed across my feeds in honor of Cancer Survivor Day. You know when Cancer Survivor Day is? It’s in fucking June. But since no one knows that, it is assumed that TODAY is Cancer Survivor Day and then every day becomes Cancer Survivor Day. And the irony is that every day for us is Cancer Survivor Day. But thanks for the re-post reminding me you feel exactly one teary emoticon and heart about it.

IT WAS SO FUN TO TYPE THAT.

 

Steve:

Here’s the big problem with these memes: they’re demeaning. The “lost their battle with cancer” language makes us victims. No one is losing a battle. Does a stabbing victim lose a battle with a knife? No. People die of cancer. And we didn’t “win.” We’re in remission (for now). We were treated in a room full of people, and many of them died. The language of “battles” suggests if we won, they lost. Don’t do that to us.

Also: I felt nothing “heroic” about being an adult and having cancer or getting chemo, surgery and radiation. I was not “brave.” I was scared. The heroes are the doctors and nurses and researchers. They dedicate their lives to saving others. They work in the middle of the night, trading time with their own families to clean up our puke. We sit in a chair and get poisons slowly pushed into our blood, because there is no choice. They come to work every day knowing they will meet lots of great, kind and caring people who will die. That’s brave and heroic.

 

Britt:

It wasn’t “heroic” of you to submit to testicular cancer treatment, Stevie. But your writing about it—well, there’s bravery and mask-and-cape stuff in that. And I agree with you about our caregivers. I can’t gush about Maria enough.

Is this too mean, though? I feel like we’re being a bit nasty. And then Darla from accounting posts, “My boobs got me out of a speeding ticket” and I want to rip out all of my new hair.

 

Steve:

What’s with the sexualization of breast cancer? “Save the Ta-Tas!” “Save a Life, Grope your Wife!” Yeah. It’s not funny; it’s sexist. My disease involved a tumor in an actual reproductive organ. But nobody sexualizes testicular cancer. Too bad, really. The jokes about my balls were damn funny.

 

Britt:

You know I’m going to need to wrap this up with a pretty bow, right? How do we land on a we-know-you-care note?

 

Steve:

Do we sound angry? Well, we are. We are angry that this despicable disease upended our lives. We are angry that it required amputating deeply intimate parts of our bodies. We are angry that our kids had to live through it and ask, “Are you going to die?”

And we are angry that all of that gets reduced to a CTRL-C, CTRL-V on Facebook.

But we’re not angry at you. We love you. You want to do the right thing. Perhaps someone you love has or died from cancer. Maybe you’re also a little irritated that a circulating status update is suggesting you don’t care because you won’t surrender your page for an hour of poorly constructed drivel. You don’t have to. You can donate to a charity, volunteer at the chemo ward… or just ask, “Is there anything I can do?”

That’s what helps people with cancer.

 

Britt:

Good advice. Loving. Pithy. True. I once compiled 10 awesome “posts” uttered in real life or typed in messages. They still mean the world to me. And honestly I feel better for having exorcized those feelings– maybe enough to delete my Cancer meme-trolling fake Facebook account. (No, I totally don’t have one of those. No, that would be mean. Nope.)

this-post-gave-me-cancer

 

If you’ve read this far and aren’t still totally insulted by him, Steve is doing his second annual Movember Foundation fundraiser. He grows a mustache, you donate to help men with testicular and prostate cancer, as well as depression. Donate here!

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I got cancer… and fat! By Steve Safran

 

Picture the fictitious cancer patient. Skinny. Gaunt. Wasted muscle clinging to pencil thin bones. Weak. They have lost a ton of weight from the combination of no appetite coupled with vomiting up what they have managed to get down. It’s the World’s Worst Diet. Everyone loses weight on it.

This wasn’t me.

I finished chemotherapy a year ago weighing one pound more than when I started. Today, I weigh 25 pounds more.

What the fuck?

So here’s the nasty trick chemo played on me. The treatment and never-ending recovery has added a lot of weight, and it continues. And, mind you, I take ownership for much of this. I did not go into treatment nice and svelte. Britt has called me “…a teddy bear… a grumpy Jewish teddy bear,” and you don’t get that moniker weighing 145 lbs.

The oncologists suggested eating 2000-3000 calories a day during the course of my chemotherapy regimen. They didn’t tell me how to pack in a 4th or 5th meal a day, but insisted I needed extra calories to fight cancer and stave off nausea. When they didn’t specify any specific source for these calories I thought, “Awesome! Ice cream at every meal!”

Except, I found out, eating was a horror. You know how you feel at 3pm if you’ve skipped lunch? Imagine that but with a sour stomach, achy bones, bitter fatigue, and a sandpaper tongue. I had nightmares where I actually screamed, “I can’t eat again!”

So there I was, lying in bed, immobile, eating 3,000 calories a day. It’s amazing I only put on one pound. Chemotherapy treatment ended. Eating habits returned to normal. Bald and exhausted, it was now time to start an exercise regimen. But my body had other plans…

Neuropathy.

For the uninitiated, neuropathy is extreme nerve pain. Imagine “pins and needles,” except the pins are on fire and the needles are sticking you a thousand times a second, all over, from the inside. Neuropathy is a common, though under-discussed side effect of chemo. About one in three of us get it. For me, it is exacerbated by heat. I keep my apartment at a temperature approaching the crisper drawer.

So here I am, post-treatment with one no-advancement-of-disease scan under my over-stretched belt, actually wanting to move. I want to return to some sort of daily routine that involves logging steps outside the apartment. But doing so activates my neuropathy. The pain is awful in a way that awful is just not nearly strong enough a word. I’ve tried meds. I’ve been to acupuncture. (A funny irony. The cure for Hell’s “pins and needles” is more pins.) These treatments stave off an attack temporarily, but a short sprint to catch the cab or extra flight of stairs is enough to warm my body for another attack.

All of which means I’m terribly out of shape, gaining weight, and damn near immobile at times. Helplessness settles in: if I can’t lose weight getting cancer, what chance does Weight Watchers stand?

I can eat less, or better, I suppose. Who couldn’t? I’m determined to fight through the pain. I’m starting physical therapy with people who specialize in neuropathy. I take cold showers after exercising (which helps) and text Britt that this sucks (also helpful).

I’ve written before about how when cancer treatment ends, you’re really only smack in the middle of it. “If you think cancer’s bad, wait until you’re cured,” I’ve noted. The PTSD. The side-effects. The constant follow-up appointments. The time spent in giant scanning tubes and machines that make loud noises. The four days after each scan wondering “Has it come back?” The cancer goes away, but the “cancer patient” remains.

Recovery for me still includes lasting effects. It also, unfortunately, includes an occasional jokey barb about my increasing teddy bearish-ness. Prior to cancer, those comments might not have weighed as heavily on me as these extra pounds. But I got cancer and got fat. Beat the first. Working on the second. Stay tuned.

goodpartfinal

Editor’s note:

I will continue to remind Steve that a recent study of breast cancer patients found an average 11-pound weight gain for women who had chemo versus those who did not. The toll these poisons take on our metabolism is still undefined, but certainly reported anecdotally and with great humor and frustration in thousands of breast cancer blogs. Hang with us, Stevie. We think you’re doing great.

 

Stabbing Myself in the Back… by Steve Safran

I lied.

I said I wasn’t going to write about cancer anymore, but the after-effects have become overwhelming and it’s time to share a little more.

So here it is. My back catches on fire.

Ok, I mean that figuratively, because this “burning back” feeling has a name: neuropathy Neuropathy is common in chemo patients– about one in three get it. Think of it as pins and needles, only the pins are sticking you from the inside and the needles are hot enough to push through steel.

It comes in attacks, and there’s generally no way to know when. I have a few indicators: I’m more prone to neuropathy when I’m hot. Even having hot soup can bring on an attack. I get more attacks when I’m tired. I get it if I’ve been walking. So as long as I don’t move or go to sleep, I’m fine.

Now, I’ve had all sorts of side- and after-effects from chemotherapy and I’m happy to make the trade in exchange for the not-having-cancer bit. However, I’m finding the nerve damage to make for a terrible Catch-22.

Some background: During treatment, cancer docs want you to keep eating. This is to keep the nausea at bay. Also, nearly every local loved one is delivering casseroles, soups, baked goods, and lasagnas. Unfortunately, eating is the last thing you want to do during and after chemo. But they recommend 2,000 – 3,000 daily calories and avoiding an empty stomach. You know that lightheaded, skipped lunch, nauseous feeling when you’ve slogged through a busy day on coffee alone? Imagine that times chemo.

But they say you need to eat. And you can eat anything. Really? 3,000 calories of Ben and Jerry’s? OK, you’re the doctor. So I ate. I ate without joy. I ate in bed. Not good.

Truth: I’m heavy. I’m 5’7” and weigh 230 lbs. Not quite Homer Simpson, but more than the standard, doughy “Dad Bod.” My ideal weight is 150-175 lbs. When I found out I had cancer, I weighed 226 lbs. When I was finally declared cured, I weighed… 227 lbs.

I put on weight while I had cancer.

If I can’t lose weight on cancer, what chance does Weight Watchers have?

So now, with “remission” and NED (no evidence of disease) notations in my medical chart, it’s time to get back into shape. Only– the neuropathy. My energy is low. The cure? Exercise. The bad cholesterol is too high, the good one is too low. The way to reverse that? Exercise. My blood sugar needs to come down. The remedy? You get it.

Except as soon as I start moving, my back, legs, and shoulders start a conflagration suitable for a Fourth of July bonfire. Get your marshmallows on your sticks, kids. Stevie’s on the treadmill.

Oh– did I mention what else helps neuropathy? Exercise.

I’m taking a fibromyalgia medicine they give those poor folks who are in a constant, unrelenting nerve pain that I cannot imagine. I get bouts of the fire needle attacks, but they go away. To feel like this all the time? Insane. I’d rather vote Trump.

I’m going to try swimming: cooler water, less pressure on the joints, less overheating. Maybe it will do some good. My Body Mass Index indicates I’m certainly buoyant enough.

The list of things that happen after cancer is getting long and, unfortunately, interesting. It may be time for a book. Working title: “Cancer: So, You Think The Disease Was Bad…”

funny-fitness-cartoon-1

My (Mostly) Final Word on Cancer… By Steve Safran

I don’t want to be known for the rest of my life as “The Cancer Survivor.” I don’t even want to be known by that label for the rest of the year. So this is my final post– more or less– on the topic. It’s not that I’m going to ignore cancer. It’s just that it’s time to get back to the regularly scheduled programming in this space.

Cancer can make you that person on social media. You know that person:

“The One with Four Thousand Pet Pictures”

“The One with ALL the Opinions about Obama/Trump/Vaccines/Guns”

“The One Who Posts Photo Memes” (so many photo memes)

“The One Who Should be Flogged with a Selfie Stick”

Admittedly, since I was diagnosed in May, my essays have been narrowly focused on reacting to that. But moving on, I don’t want to be “The One Who Only Posts About Cancer (but Didn’t He Used to Have a Sense of Humor)?”

For someone who didn’t immediately disclose his diagnosis on line, I guess I’ve come full circle wanting to give my timelines a break from cancer. For someone who has been paid to advise people to tweet and share and like and network, I wasn’t sure this felt right back in May. So I asked a friend, whose wife was diagnosed with breast cancer in 2014, how they decided to update everyone via social media.

I can boil down his advice as follows: People are going to find out anyway, so they may as well hear it from you. And once you decide to share, you owe it to your friends to update them on your progress. In the absence of information, they’ll assume things are getting worse. And vague updates are a really quick way to anger, worry, and annoy your “followers” even when you don’t have cancer.

So, I wrote. I shared the stories about the diagnosis, the weird hospital experiences, the humiliation and, yes, the very dark humor there is to be found in cancer treatment. My friends, supportive blog readers, and my growing circle of cancer survivor allies kept responding positively, so I kept writing. It was the only aspect of The Cancer I had any control over.

This past month, I’ve been raising money through a very silly cancer fundraiser called The Movember Foundation. I’ve grown a mustache, and friends have donated money—many have ignored their razors in hairy solidarity, too. The generosity has been remarkable: My friends have donated $3,200 to charities that concern themselves with testicular and prostate cancer, as well as other men’s health issues. I am honored, humbled, and grateful.

I’m cured now. “Movember” ends tomorrow. It’s time to get back to life without chemo and end the run of cancer-centric posting. I need to write about the new experiences, humiliations, and dark humor that 2016 will bring. I need to find a job. I need to post stupid jokes, mock Britt’s gardening obsession, poke fun at Debby’s height and Jason’s bald head (now that my hair’s back) and, possibly, be a little nicer too.

I want to be known as a lot of things: a friend, a dad, a colleague, a wiseass, a writer, an off-key singer, and a Sox fan. I’d like people to know I’m one of the world’s most average ukulele players. I want to be known as trustworthy, sincere but a little too sarcastic, open to new ideas and yet still set in my ways. I even like being known as “The One Hit by the Bat at Fenway.”

As for now, I’m finished being “The One Who Had Cancer.”

Steve Movember

‘Stash-tastic Stevie

A Guide for Post-Cancer Patients and their Caregivers, by Steve Safran

First, a thank you. I am overwhelmed by the reception I received for my article “After the cure, the cry.” Britt tells me 1,000 people read it. Many people—friends and strangers– have contacted me and shared their personal stories with cancer, recounting their own illness or remembering a family member who went through it.

Grappling with my own, complicated emotions in the post-treatment period, I found a great many resources out there for people suffering through “Cancer-Related Post-traumatic Stress.” The important message in all of these is this: You are not alone. These words from the National Cancer Institute (NCI) ring true.

“Symptoms of post-traumatic stress usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards.”

(Mine began about three days after learning I was in remission.)

I kept asking myself, “I’m in remission. So why do I feel so miserable?” The NCI list of key triggers for PTSD made me wonder how anyone escapes this. As a cancer patient, you’re hit with a series of terrifying events, any one of which would be stressful. Combine them, and they make a mighty cocktail of traumatic triggers:

– Being diagnosed with a life-threatening illness

– Receiving treatment

– Waiting for test results

– Learning the cancer has recurred

To that, I would add that only doctors on TV ever say, “You’re cured!” so we live with “Learning the cancer may recur.”

Side bar from Britt: Still reeling from these events, you can imagine how odd and occasionally irritating all of these Stay Strong Be Positive Awareness campaigns can be. With everyone gleefully praising the bravery and strength of cancer patients, while walking their own healthy bodies all over town for a happy cure, we might feel a bit of guilt or anger that we’re unable to pretend it’s all over. We might have (temporarily) beat cancer into some undetectable submission, but it is an albatross to our peace.

Cancer patients aren’t the only ones subject to PTSD. Caregivers are susceptible, too.

“PTSD can also affect caregivers. Learning that a loved one has cancer, seeing a loved one in pain, and experiencing a medical emergency are traumatic events that may contribute to the development of PTSD symptoms during treatment or years after the person has survived the cancer.”

So families and caregivers need support, too. For me, cancer was a full participation, family event. My parents, my sister, and of course, my kids weren’t shielded from the times I was in pain or scared. We’ll need to keep “checking in” to gauge the fallout of this on each one of us. I hadn’t put a lot of thought into how my disease would influence their feelings in the future. Now I will.

What should we do about this? Is there a way to proactively safeguard our loved ones in the aftermath? Actually, yes. There are a few recommended steps. The first is everyone should have an opportunity to talk to a psychiatrist. Having a trained professional define the trauma and help identify its effects on your worldview can be enormously helpful. Also a doctor can and will, if necessary, prescribe medication. It’s been my experience, so far, that making sense of things with a psychiatrist is as much a part of healing as growing new hair. Holding in feelings of any sort is not healthy. Exorcizing those thoughts with a trained professional– not just your friends– is the way to metabolize them. This is just as important for caregivers and loved ones to consider as well. While your best friend or loyal sister is a great listener, a third party relieves her of trying to comfort and be comforted: You can’t be the patient and the therapist.

Another way to heal? Mindfulness. I’ve only just started to learn about this, so forgive me for being new to the effectiveness of this practice. Mindfulness, to be reductive, is yoga and meditation without all the New Age, crystal-waving, stand-on-one-leg, astrology-reading bits. And there is scientific proof that it works:

“A controlled study published in 2000 looked at 90 cancer patients who did mindfulness based stress reduction (MBSR) meditation for 7 weeks. They found that people who meditated had 31% lower stress symptoms and 67% less mood disturbance than people who did not meditate.”

I love controlled studies. They beat the heck out of well-meaning friends who say, “I have a cousin who only eats pomegranates and he’s been in remission for 30 years.” I went so far as to switch to a specialist trained in mindfulness and meditation. Mindfulness isn’t faith-based, and doesn’t actually require that you post inspirational quotes over blurry skies on Facebook. A good friend observed: “So those cultures that have been doing this for thousands of years probably knew something after all?” Go figure.

If you are in cancer recovery or in caregiver remission, please pay attention to signs of PTSD, take advantage of the many resources available to you, and never forget that you are not alone. I’m overstating the point, but as I’ve said before: “You think the treatment is bad? Wait until you’re cured!”

Britt cannot resist science puns...

Britt cannot resist science puns…

After the Cure, the Cry… by Steve Safran

I broke down crying in Target today. Just started blubbering. People must have thought I was really upset they were out of the $9.99 sale sweatshirts.

This will be heavy. This is not the usual, lighthearted stuff I want to write. But this blog has always been weirdly honest, even when Britt and I have been at our jokiest. I like to think we’ve put stuff out there that’s tough to discuss, and more uncomfortable to admit. And right now, things are difficult for me.

I didn’t cry much during treatment for testicular cancer. Not when I was diagnosed. Not when I was in pain. Not when I spent endless hours in the hospital, frustrated at the lack of attention, information, or prompt pain management. Hardly a tear. Now that I’m in remission and feeling well enough to shop for sweatshirts at Target?

I can’t stop crying.

During the Battle of Britain in 1940, as Londoners were faced with being obliterated by the Luftwaffe, the incidence of mental illness dropped. Fewer people visited psychiatrists. Even as the Germans tried to kill them, Britons actually experienced less stress and need for psychiatric care. You can chalk that up to the famous British stiff upper lip, but it’s likely something more universal: when you’re under attack, you don’t have time to worry.

This is Post Traumatic Stress Disorder. Soldiers don’t get depressed in the field. But for years after– even for the rest of their lives— they can be haunted by the trauma they saw and endured. It’s only after the battle is done that your mind takes a beat: “Hey. Wait. What just happened?”

Thus, me, cancer… and the crying.

Right up to the moment they were rolling me into the operating room, I felt absolutely fearless. I was even indignant that the surgeon was running late. I was pretty drugged up, but I know, I absolutely know, I didn’t feel scared at that moment. I said, “Let’s do this” with all the bravado of a warrior. Let’s go in and smoke out the enemy. The camo was on, the war paint was smeared, and I had readied myself for battle, albeit wearing a backless nightie in a sterile room with polite nurses and soft rock.

Of course, I had an initial cry of relief. The release. It felt good. Someone with CT scan results and authority said, “remission,” that no more treatment was needed, and boy was that cry-worthy. But within just a couple of days, I switched into a very different gear. And things got dark. And I started to think…

My body tried to kill me. Twice.

First it betrayed me with cancer, and then a week later it attacked me with a pulmonary embolism. I’m having a hard time forgiving my body for that. To be struck by an enemy soldier is one thing; to be attacked from within? My body tried to kill me and when it wasn’t successful the first time, it tried again.

Bastard.

Now my body has scars. They embarrass me and they will never go away. I have had far more difficult emotional days since being cured than I did while undergoing chemo. I have hospital flashbacks, picturing needles and bags full of chemicals and it’s all horrible like some sort of far-off, war-torn jungle. Also, now I get a lot of eye boogers. Apparently chemo messes with your tear ducts. Not enough to stop the crying, apparently, but another daily reminder that I needed tear duct-poisoning medicines to ensure my survival.

I’m getting help. I talk with a psychiatrist who says he’s a “big fan of crying.” I see what he means. It metabolizes the pain. Crying is the most human response to all of the loss: losing parts of my body and, at least for now, any sort of confidence that it won’t betray me again.

There is appreciative crying, too. These tears spring from a different place. I think back on all the people who helped me–  all of the people who volunteered their time or simply gave a thumbs up to a posting. Cancer can remind you that you’re actually very loved, and the overwhelming gratitude in the aftermath makes it occasionally hard to speak without choking up.

It has been about four weeks since I learned the chemo worked. And I’ve gone from crying all the time to maybe once a day. So maybe there’s something to this business after all. It’s not manly, at least not in the traditional “suck it up and be a man” sense. But I think I get a little leeway on the “manly” front after getting the kind of cancer that requires the removal of an intimate chunk of physical manliness. The chunk, by the way, that was trying to kill me.

How do I forgive my body for attempted suicide? How do I come to terms with forever being branded a “cancer survivor,” or letting go a carefree notion that serious illness is something that happens to old people that aren’t me? How the hell do I get over this?

I don’t know. For now, I cry.

Happy, grateful crying when Stevie got the good news.

Happy, grateful crying when Stevie got the good news. Also, another example of how nurses are awesome.

5%… by Steve Safran

I still have cancer.

I expected to have a different lede to this story. This was going to be the “I’m cured” post. 95% of all men who undergo the treatment I’ve had for testicular cancer are cured at this point. I’m in the five percent– just not the five percent everyone yells about at Wall Street.

Things are going in the right direction. I started with three tumors, and they were The Three Bears of cancerous lumps. Baby Bear and Mama Bear are just about gone, and Papa Bear is half the bear he used to be. I will be cured. Just not today.

This was going to be The Month. I had my mindfulness-filled mind set on a cancer-cured week on Cape Cod, grilling grillables and drinking drinkables. My meditation space had me on the beach, looking back on the one-two punch of cancer and a pulmonary embolism that tried to make me into a mawkish-if-easy Facebook entry for all of you. (“If you remember Steve, please repost.”)

Instead, the best news I got this week is that the mall I live above is getting a Wegman’s. Now, they have a cheese selection that, while I don’t want to say is “to die for” given the topic at hand, is damn good. I’m not complaining. It’s just that, during chemo and my Special Vomit Time, I wasn’t focused on what would replace JC Penny.

What’s next? A four-week wait. The doc wants to give the Papa Bear lump a whole month before they run another test. I am the most impatient person I know. I hate waiting. Did you travel this summer? Did you get stuck on a plane? This is just like that only, instead of not being sure when your flight will leave, you don’t know if they’ll give you surgery when you land.

I still made it to Cape Cod, but Dad worked the grill. My drink of choice wasn’t a G&T, it was Gatorade. I’m not cured but, to quote Sondheim, my dears– I’m still here. Even if I am a five percenter.

Convalescing on the Cape with a 5 percenter view

Convalescing on the Cape with a 5 percenter view

The Chemo Nausea Pizza Scale, by Steve Safran

How much pain are you in right now? On a scale from 1-10? Probably none, right? Now– and this is for the sake of science and also my amusement– put yourself in some pain. Any pain. Pinch yourself. Bend your finger back a little too much. Stub a toe. Now how would you rate your pain? A one or a two? What if someone stepped on your foot really hard? Bet that’s a four or five. Step on broken glass? A six.

What if you had a tumor in your back?

I don’t want to get all heavy here. I’m just trying to illustrate how relative pain is. Suddenly getting your foot stepped on is, at most, a two. That’s the problem with that smiley-to-full-agony face pain scale that’s ubiquitous in hospitals. They ask you to rate your pain on a scale from 1-10 without any words that describe what a four, six or ten feel like. During my first admission to the hospital for what turned out to be testicular cancer, I was in the worst pain in my life. It was a full 10 on the Steve Scale of Experience. But… I didn’t have a compound fracture or gunshot wound. I imagine those are worse. They sure look worse. Are they two agony faces worse? I bet they’re four agony faces worse. But my pain was more than a four, right?

The numbers needed descriptors like:

  1. Isn’t this a lovely day? Sorry to bother you, but I need a Band-Aid.
  2. Eh… not so bad, but I thought this should be seen

and maybe

  1. This is worse than the time in preschool Kim threw a rock at my head, but not as bad as when she threw the second one because the first one didn’t bounce to her liking

and

  1. That’s not enough morphine and I question your training that you’re only giving me that dosage

I need a scale that is more relatable. During chemo, you have to keep eating. You need to eat so that your stomach stays full and you don’t get sicker. It’s pretty cruel. I’ve shed tears at the thought of having another meal. So with cancer treatment, pain isn’t really the problem. Cancer is a nausea experience. And so every day at the chemo lab, this question: “From 1-10, how nauseous are you today?”

I have designed a system I feel is more precise than the smile-to-agony face sliding scale of misery. It’s the Chemo Nausea Pizza Chart. In essence, “Given the way you feel right now, how opposed would you be to eating some pizza?”

Why pizza? It’s pretty universally loved. And there’s precedent. You eat pizza when you’re drunk, so we’ve established you’ll have it when you don’t feel great. Also, it’s mostly bread, which is pretty easy to digest. You can make it through a slice if you really have to. Here’s the scale:

THE CHEMO NAUSEA PIZZA SCALE

From 1-10 How Opposed to Eating Pizza Are You Right Now?

  1. Pizza? Fantastic. I love this hospital. Another Yelp star for you!
  2. Sure, why not?
  3. Seems like an odd question, but I’ll have a couple of slices.
  4. Yes, but it better be really good.
  5. Well, I know I’m supposed to keep eating. Make it the thin crust stuff with a side of IV anti-nausea drugs going.
  6. Sure, if by “Pizza” you mean “Saltines.”
  7. You have some nerve asking that. Have you ever been nauseated? Force it on me if you must.
  8. Is your degree honorary?
  9. Awesome idea! Why don’t we get a make your own sundae bar and a moon bounce in here, too?
  10. No, and I will never eat again.

painfaces0-6

From the always awesome Hyperbole and a Half  http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

Cartoon credit to the always awesome Hyperbole and a Half 

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.