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

Advertisements

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…