The Story I Don’t Want To Tell (About My Cancer) – Part VI: Radiation

The plan was twenty-eight sessions of radiation. When I first heard this number it sounded like a lot. I mean, it was Stage 1; we had caught it early. And I knew of one other person who was diagnosed with anal cancer Stage 3 who got twenty-eight sessions as well. So going into this process, I was thinking, “Overkill?” But at the beginning, I was trying to be a “good patient,” compliant with my doctors’ orders.

Plus, to a certain extent my doctors are the experts when it comes to cancer. I may be the expert when it comes to my body, but cancer is a complicated maze that I didn’t have time to go to medical school for. The clock was not running the way it is for someone with Stage 4 pancreatic cancer, but it was running nonetheless. I didn’t want this monster to spread to my lymph nodes (Stage 2) or into other organs (Stage Infinity & Beyond).

A week before radiation began, I had an appointment to do a “dry run.” I met the radiation oncologist, my nurse, Jill (who would spend time with me after each of my radiation sessions), and several of the technicians.

CT scans provided the technicians the necessary information about my cancer’s whereabouts. I received three tiny tattoos (to facilitate lining up the radiation beam); one on my pubis and one on either side of my hips. It’s not perfect aim, but it’s as precise as is humanly possible.

I rehearsed the position I would be in during my radiation sessions: on my back, knees bent up and then dropped open to the sides, soles of my feet together, exposing all the goodies between my legs. (Because I wasn’t already feeling vulnerable enough.) A mold was made of my legs in this position so that I could closely replicate the same position during the real deal.

The sign on the door where I received my radiation treatments reminded me that one doesn’t want to wander in when the machine is running unless you’ve got cells on your body you want zapped. I wondered about the safety of the technicians, of everyone in the building really, who was separated from the machine (and another one like it somewhere down the hall) by mere walls. Radiation, after all, can be a cause of cancer. The radiation machine, which I named Big Blue Bertha (and is pictured in the title photo), had a commanding presence in the spacious Linear Accelerator Room.

Someone with a kind soul decided that photographic murals on the walls depicting lush woods, and large photos on the ceiling of a sunny, blue sky with puffy, friendly clouds would be soothing. If truth be told, it was a little. I wished the trees were real, capable of healing oxygen generation, and that the gamma radiation rays would be as gentle as the sun’s. I made lots of hollow wishes in that room.

I lay on my back on a table before Big Blue Bertha. I felt slightly sacrificial, but I tried my best to focus on the ultimate benefits. I was naked from the waist down with a modesty drape over my crotch. Not that I cared; I’d been scoped, inspected and prodded to the point of do-whatever-it-is-you-have-to-do. I had nothing to hide.

Getting me into position was the longest part of the procedure. I lowered my legs into the mold we’d prepared, and the technicians, Madison and David, read data on the machine and then asked me to skooch accordingly. A little to the left, a little to the right, towards my head, towards my feet, until we got it just right.  Then the technicians left the room and I kept still while Bertha did her thing. This ritual was repeated for each session. I’d sing a song to myself in my head or just focus on my breathing. The actual beaming of radiation took about five minutes.

At the end of my first session, I asked Madison and David how long it would take for me to start being unhappy about seeing them. “The end of Week 2,” they responded in unison. They were spot on.

Think of radiation as an invisible laser beam that burns all the way through you, but you don’t feel it as it’s happening and you don’t immediately see the havoc it is wreaking. It’s sneaky that way.

By the time session #24 was supposed to occur, I could barely walk. It hurt to press my legs together in any position. Try walking without your inner thighs touching; it’s tricky and awkward looking. Sitting had long ago become unbearable. Although the cancer was on my anus, the neighboring parts of my anatomy – my colon, vagina, vulva, bladder…you get the picture – were also red and swollen from the radiation, because the nature of radiation is to…well…radiate. So the healthy tissue surrounding the actual cancerous cells were collaterally damaged and burnt as well.

The day of session #24, I had already completed my second four-day round of chemo and I had taken a whole week off from radiation treatment. It wasn’t ideal, but I had demanded a break and the docs were willing to give me one. Typically, I only got Saturday and Sunday off for good behavior.

By the day of session #24, my pubic hair was completely gone. And although women pay good money to make this happen, I wasn’t pleased. This was a sign that my body was dis-eased.  The hair on my head had also thinned considerably. I kept trying to part my hair somewhere on my head that wouldn’t reveal a large blotch of blank scalp. But honestly, I was glad I wasn’t completely bald; I suspect I don’t have one of those “pretty-shaped heads.”

The delicate skin between my legs – front and back – was oozing and raw, and I’d been “Commando” for weeks. I spent my days and nights in bed, naked, on my back, legs spread apart with pillows under my knees, covered by a single cool sheet. My entire body felt feverish, like a 24-hour hot flash. The targeted area was burnt and stung the way a burn stings (think: hand to a hot iron). None of the creams/lotions/gels offered relief. In fact, they all caused me to itch, which was just another hell to contend with because how do you wipe something off of burnt skin without causing more pain?

And if you need a visual, simply Google images  for “cancer radiation burns.” Now imagine that between your legs.

By the day of session #24 I was taking oxycodone and/or morphine for the pain, mostly at night so that I could get some real rest, but the ensuing constipation became a problem because the lining of my colon was burnt and raw. Stool softeners were useful, but too much of a good thing resulted in diarrhea, which was equally problematic. Achieving a balance was tricky and rare. Surprisingly, the most painful part was peeing! It was like passing shards of glass. I kid you not. I poured cold water down my crotch as I urinated to counter the burning sensation as hot, stinging pee passed through my urethra. It seemed to confuse my nerves in the area just enough to keep me from passing out.

By the day of session #24 I had lost almost 35 lbs. Trust me, I did not need a single one of those pounds, but I do not recommend cancer as a weight-loss strategy. I lost weight because I’d been eating like a bird for several weeks. I didn’t want to eat and I didn’t want to drink because what goes in must come out. The toilet had become my enemy. I ate three meals a day (thank you, Mom), but a meal often consisted of two bites.

By the day of session #24, I’d had it. I smelled like charred human remains. I was an open wound. And I was braced for an argument with my radiation oncologist about continuing with treatment.

I’m not sure how I made it into the back seat of the car the morning of session #24. I lay on my right side, with my left foot anchored on the car window so that my legs could remain spread. I was wearing a long dress and no underwear.

When we got to John Muir Hospital it was raining and everything smelled green and fresh, a contrast to the stench of my own body.

I asked for a gurney. I’d spent all my energy getting out of bed, showering, dressing, manipulating my body into the car, and bracing myself during the turns and bumps of a typical drive to the hospital. What little energy I may have woken up with that morning was completely kaput. There was no way, even with my mother supporting me on one side and my sister on the other, that I was going to ambulate from the parking lot to the examining room. A wheelchair (because wheelchairs are chairs and you have to sit in them) was not an option.

I remained on the gurney in the examining room. Everyone agreed it made no sense to cause me additional discomfort by transferring me to the examining table. Jill (my nurse, my angel) held my hand while I cried and waited for the doctor to arrive. My mother and sister sat silently and solemnly in the corner.

My radiation oncologist came in and took one quick look at my “affected region.”

“So?” I asked.

“I can see why you want to stop.”

Oh, thank God. I wasn’t going to have to argue with him after all!

But he continued, “You’re five sessions short of the recommended protocol, and I would prefer that you continue…” uh-oh, I could feel a wave of tension fill the room “…but I can see that we’ve done a substantial amount of damage to the tissue in the area…” (duh!) “…and chances are, we got it.”

A pause while I processed his clinical assessment and framed my next question.

“All right doc, let me ask you this…” because I was really trying to be cooperative and stick to the highly successful protocol, “…if I completed all 28 recommended sessions, would you be able to say with certainty that we did get it?”

I wanted him to say “no”, because a lack of certainty on his part would give me the graceful exit, the excuse I was looking for, to get out of doing more (helpful ?) damage to my body.

And I wanted him to say “yes”, because when you have cancer, you crave certainty.

He took a deep breath and uttered, “No.” And for a moment, I felt sorry for him. He was just a radiation oncologist, after all. Not a soothsayer.

“Then we’re done,” I decided. My body, my choice. “No more radiation,” I emphasized, in case anyone had any doubt. The entire room released a sigh of relief, or perhaps resignation.

They gurnied me back to the car, drove me home, and settled me into bed where I now had all the time in the world to wonder if I’d made the right choice. What if we didn’t get it? Could the most sensitive tissue of my body possibly handle five more sessions of radiation and perhaps get me that much closer to “cured”? Would the extreme burns ever heal? Would my life ever get back to pain-free?

Could I just die now?

For the first time, during daylight hours, I took the full recommended dose of morphine. I decided I could handle the ensuing discomforts because I could now see the finish line. There would be no more lousy choices. I entertained the thought that the worst of the pain, the feeling sick, and the utter exhaustion were now a thing of the past. On the day we had scheduled for session #24, I drifted off to sleep daring to believe this anal cancer journey would soon be behind me.

Haha. No pun intended.

NEXT: Part VII – Insurance