Limbo

I woke up this morning to find my underwear on the kitchen table, right next to the bottle of tequila.

The Jose Cuervo was unopened; the party’s not until the weekend, when my college girlfriends come to visit. But after a morning visit to the doctor and a couple of afternoon errands, I was so wiped out when I got home yesterday, I apparently couldn’t even make it to the bedroom. I dropped the bottles on the counter, peeled off half my clothes right there in the kitchen (because I’m hot, and then I’m cold, and then I’m hot, and then I’m cold) and collapsed onto my couch for four straight hours of Law and Order. It is possible, I have recently discovered, to watch Law and Order almost incessantly, day or night.

This fatigue thing was first on my list of things to ask Dr. R about at our appointment yesterday, along with the flu-like aches, weird joint pain in my hands and extreme temperature swings. I had had a little burst of energy after my final radiation treatment, feeling great while I was sailing on Cape Cod for the weekend, and even during my first few days back in Philly, but after five days, I crashed.

I also needed to know what my follow-up care would be. How often will I have to get PET/CT scans and blood work in the years ahead?

To my surprise, Dr. R’s first concern was something completely different.

“Your tests are good, your blood work looks great. What I really want you to be on the lookout for now,” he said, “are signs of depression. Everybody wants to celebrate because treatments are over, and you look good so they think you feel good, too. But it usually takes three to six months to really start feeling better. Some people say it took a year for them to feel ‘normal’… whatever the ‘new normal’ is.”

Dr. R handed me tissues before I even realized my eyes were welling up.

“Everybody keeps asking me what my plans are now,” I said. “Jesus, I’m exhausted.”

I have discussed this with a few friends in recent weeks. One suggested I might be experiencing a little bit of survivor’s guilt. God knows I have seen countless people in the last eight months much worse off than I am. And of course I am grateful that my prognosis, my care, and my support were the best imaginable. And yes, I know that soon enough, I’ll be back to work, and things will be back on track. Relentless optimism takes a bit of a toll along with the treatment.

My first instinct is that the survivor/war analogy is a little extreme… but then I remember that all the cancer books use war analogies. Your body is “invaded” by “hostile” cancer cells. Chemotherapy and radiation are your “armies” designed to “attack” the invaders. During the fight, lots of good guys get killed. Whole platoons of healthy cells are victims of friendly fire.

“I do feel a little bit like a war survivor,” I confided to one friend. “The war is over! I lived! But then I look around at all the rubble. My world is hardly in ruins, but there’s a lot of rebuilding to do. I lost a year of my life. And I’m fucking tired.”

In some ways, this period of time coming up feels the most difficult and complicated. I wasn’t kidding when I told people I didn’t feel brave going through treatment. What’s the big deal? You just show up when they tell you. Once you make a few decisions about your care, the rest is out of your control. But now that it’s over, now what? This is the hard part. It’s not even interesting to write about. At least hell is perversely interesting, even sometimes funny. Limbo is just banal.

“You and your body have been through a lot,” Dr. R reminded me. “A lot of people report symptoms of post-traumatic stress syndrome.”

I see Dr. R again in three months. I’ll get more blood work and another scan then. I’ll see Dr. R every three months for… a long time, I think. Any recurrence of Hodgkin’s is most likely in the first few years. After that, we start looking for secondary cancers… but we won’t talk about that right now. There are too many other things to think about first. But not today.

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But Seriously, Folks...

Here’s something you don’t want to hear while waiting for your daily dose of radiation:

There’s something wrong with the machine.

After more than a week of right-on-schedule treatments running like a Swiss subway, one day during my second week of radiation there was a backup and the waiting room was full. Normally, it’s pretty quiet in there, with everybody doing the look-at-the-ground-shuffle-your-feet-in-silence-or-maybe-whisper-quietly-to-your-radiation-date thing but on this day there was an edge in the air, with everyone not so furtively checking out everyone else. I honestly don’t remember who broke the ice, but it’s a safe bet that it was me.

“I picked the biggest gown in the joint,” I announced, emerging from the ladies locker room in a hospital robe down to my ankles. “You and I should swap,” I suggested to an older man, slumped in a chair with his arms crossed over his chest, his blue gown barely covering the lower portion of his thighs.

“They’re all the same size!” insisted the senior citizen volunteer, whom my mother calls Rosie the Riveter, the one with the gravelly voice who sits, unapologetically, in the cancer ward, talking about drinking and smoking.

“Oh, no they’re not,” protested another man, setting off a lively debate about gown selection. I twirled around in my floor-length number to help prove his point. “At least you’ve got nice legs,” I said to the guy in the mini.

Once the gown discussion was exhausted, conversation turned to the life-size, molded plastic masks (note to self: find out what they call these things) that hold you in place on the table and mark your radiation spots. The question: To keep or not to keep? One woman said she couldn’t decide. Her neighbor, she informed the audience, had his hanging in his backyard shed along with the gardening tools and lawn mower. An elderly gentleman sitting across from her said he didn’t know how he would get his home, since he rides the train in to treatment. Rosie suggested a big plastic garbage bag. Perfect! I said. It’ll look like you’re dragging a body onto the R-6. That could be fun.

Cancer patients have proven to be hilarious stand-up comedians, especially considering the limits of the material. Most of them just get quiet when they’ve run out of jokes, but those with the energy to continue talking tend to turn to the serious stuff, the stuff that prompted me not to talk to anyone during my months of chemo, a decision that seems wiser by the minute. This one has a brain tumor. That one has tonsil cancer. I had wondered why not all the patients in the waiting room changed into hospital gowns. Suddenly it dawned on me: These people are all getting radiation to their heads.

Rarely does someone come right out and ask you what’s wrong with you. The questions are more oblique: How are you feeling today? How much longer is your treatment? It doesn’t take long to assess that everyone in this room has it worse than I do. I recognize the woman sitting across from me from the skin care and makeup session I had attended during my first month of chemo in the spring. Her treatment for breast cancer had been well underway at the time. How much longer is your treatment? I ask. She has to get chemo until December.

My first week of radiation had been sobering for different reasons. Two people I had worked with in television died of cancer, one from lung cancer, and one from colon cancer. The sportscaster who died of colon cancer was just 46 years old.

I tell the lady sitting next to me, the one who just had 14 lymph nodes removed, the one with the scar all the way up the side of her jaw, that she should go to one of the Look Good, Feel Better sessions. There’s one coming up in September, I tell her, I saw the flyer in the elevator. It was worthwhile, wasn’t it? I say to the breast cancer patient. Yes, she agrees. You can see how much it’s helped us, she adds, dryly. I am sitting there with no hair, no wig, no scarf. Neither of us is wearing any makeup.

Two people with ports sticking out of their throats walk by. It’s all relative.

I am almost always the youngest person in the room. Kids with cancer must all go to special hospitals. Half the patients here call me “honey” or “dear.” How are you feeling today, honey? Good luck to you, dear.

I am relieved when they call my name. Renee, my awesome radiation therapist, has Motown playing. The Temptations are singing “My Girl” as I climb onto the table.


Because my normal machine is “down,” I get treated on one of the older machines. It takes three times as long to deliver the same amount of radiation. Instead of counting to ten for each zap, I count to 30. It feels interminable.

“How many X-rays is each of these treatments equal to?” I ask Renee.

“Nobody’s ever asked me that before,” she responds, promising to follow up with one of the physicists. She will later tell me that the physicist said the number was too big to calculate. She does know, however, that one trans-continental flight will expose you to the same amount of radiation as a chest X-ray, a random statistic, but no more random than saying “I’m getting 30 grays of radiation.” At least it’s a statistic I can remember.

On Friday, week three, my last day of radiation, the waiting room is practically empty.

“Where is everyone?” I wonder aloud.

“Friday in the summer. People take the day off,” responded Rosie.

“You mean the staff. But what about the patients?”

“Them too. People like their long weekends in the summer. They take Friday off.”

From radiation? You can do that? It makes no sense, but what else is new?

“Bye-bye, honey,” says one of the men. “Good luck to you.”

“Good luck to you, too,” I say.

For all our chattering over the previous three weeks, no one ever exchanges contact information, or even names.

I know I will never see any of them again.

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24

August 15, 12:45 p.m.
Philadelphia
Last Day of Radiation

August 16, 12:45 p.m.
Cape Cod
Catboat Regatta Start Line

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A Day at the Beach

Radiation beachwear versus Caribbean beachwear.

There is no more right now... I just have no idea how to get rid of that "click here to read more" link...

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Whirrr! Click! Zap! Holy Radiation, Batman!

"What fresh hell is this?"
--Dorothy Parker

The entrance to Jefferson’s cancer center is on the street level, on the southwest corner of the hospital, at 11th and Sansom Streets. To get to the place where they do radiation, you get into the elevator and push B. According to the elevator buttons, there is only one level between S(treet) and B(asement)—a staff floor, full of offices and off-limits to patients—but it takes forever to get to The Basement. This is, I imagine, because there are several other levels of (unmarked) hell between the street and my destination at the final, bottom rung.

The first time I was ever in this place, Dr. X tried to tell me that the reason all the scary radiation equipment was located well below sea level is that it is all extremely heavy, but I am smarter than this. Did he think I didn’t notice all the warning signs, and the no-children-beyond-this-point message, not to mention the ghostly appearances of all the patients walking out of the restricted areas. Surely the fact that these machines spit out toxic amounts of radiation daily has something to do with their location.

When you get to The Basement, hereafter referred to as Hell, the first thing you do is scan in at reception. The technicians who made the mold for your head and the plastic mask that fits over your face and chest two weeks ago also snapped the most hideous digital photo of you imaginable. This will be used to identify you every time you visit Hell, which will be daily, Monday to Friday, for the next three weeks. As this is shorter than the average stay in Hell, you are reminded to count your blessings.

You change into your humiliating hospital gown, then sit in the waiting room. Men and women, patients and radiation dates, all wait in the same place. When it’s your turn, they call your name over an intercom, which sounds like a muffled announcement on a SEPTA train. You get up, walk the gauntlet of the damned, then turn down the hall to the treatment area where you scan in again, then lie down on the table. Hell, by the way, is freezing.

The radiation therapists place your head in the cradle that’s been molded to your shape, slip a pad under your knees, and secure the Friday-the-13th-Jason-like plastic mask over your face and chest. You are now the star in your own private horror movie. “We’ll be right back,” one of the extras says, as they all leave the room. It’s hard to tell the villains from the superheroes around here.

Here are some of the possible side effects of radiation therapy: Sunburned skin. Sore throat. Trouble swallowing. Fatigue. Hypothyroidism. Lung cancer. Breast cancer. Heart disease.

Here is what you feel: Nothing.

Here’s how long you have to worry about the possible side effects: The rest of your life.

Here’s how long it takes: Eight minutes.

That’s eight minutes from the time you lie down on the table to the time they are setting up for the next guy. The actual blasts of radiation take less than a minute. One five second blast, followed by 11 seconds with the beam underneath the table; then the machine spins 180-degrees and stops above you for another five seconds, followed by another 11 seconds. 32 seconds in all, by my calculations. It’s okay to keep your eyes open, Dr. X reassures, as the radiation, being delivered to the chest and neck is “nowhere near” the face.

The devil’s in the details.

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