“Maybe you should take off the seat belt,” Dad said.
“She can’t take off the seat belt, Morty. What if we got into an accident?” my mom reasoned.
“Put the seat back.”
“Put your legs out.”
“Put the back down.”
“Everybody calm down. Nothing helps, so let’s change the subject!” I shouted.
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Then after a long tense silence: “Where we goin’ for lunch?
Are we meetin’ Elaine?” Mom asked.
“Yes. I invited her and Allan, Rachel, and Greg. We’re all gonna meet on the patio at Orso’s after my checkup,” I said, grateful we were onto something new.
“That’s nice, I like that place,” Mom added.
“I could eat pasta every day,” Dad chimed in.
“Me, too,” said Mom.
“Me three,” I said, then turned to John. “Now you’re supposed to say, Me four.”
To which he replied, “I like sushi better.”
Mom and Dad had come along for support. Mom was more open about her worries and fears. She wanted the whole thing to be over already.
Dad tried to lighten the mood by discussing sports with John.
“Say, John, do you have any interest in going to Santa Anita race-way tomorrow?” he asked.
“I can’t. There’s a Red Sox game,” John answered.
“Those bums?” Dad said, egging him on.
“They’re my team, I’ve got to support ’em,” he said as we pulled into the parking lot.
I couldn’t wait to be sitting on the patio at Orso’s. I was anxious about the whole thing. What was my surgeon going to say?
Just going back to the hospital put my stomach in knots. As we took the elevator down to the cancer center, my legs got weak and I felt nauseous. I was walking very slowly in those days, but tried to maintain good posture. I asked my folks to sit in the waiting room, where the aquarium was, while I had my exam.
When Doctor #9’s nurse put me on the scale, I weighed in about four or five pounds lighter. “That’s all?” I exclaimed. I couldn’t believe it. I’d felt sure that discarding all those un-wanted body parts would mean at least ten. I felt anxious as we en-9377 Cancer Schmancer 2/28/02 4:18 PM Page 157
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tered the examining room. I didn’t like it there. It was small and sterile. No windows, fluorescent lighting, and completely lacking in comfort or warmth.
The nurse checked my blood pressure, my pulse, and my temperature. So far, so good. I was handed a hospital gown to change into as I neatly placed my clothes on the chair next to the examining table. There was restraint to my movements. I just wanted to be putting on my clothes again and leaving. The doctor entered, cheerful as ever. She offhandedly mentioned a tabloid. “I don’t know about you, but I got a kick out of being in there,” she said.
That was the first time a tabloid had ever been mentioned to me.
Up until that moment I’d no idea the story had run anywhere but in the article Elaine showed me in the hospital. Well, I guess that made it official. Everyone knew I’d had cancer, and everyone knew I’d undergone a hysterectomy. Nothing to be ashamed of—still, it made me self-conscious and embarrassed. It all felt too personal to be so public.
As I lay down on the table and placed my feet in the stirrups, the nurse drew the curtain closed, separating me from John. I tried to detach myself from what was happening. I closed my eyes as Doctor #9 penetrated me with her fingers, feeling for abnormalities in both my vaginal and anal cavities. I wanted to get out of there so badly, but she continued to poke and prod as if she were an auto mechanic looking under the hood.
“Any trouble urinating?” she asked.
“No.”
“Diarrhea? Constipation?”
“No. No. I’ve experienced some light pink staining after intercourse,” I said, hating that John was on the other side of the curtain. I hadn’t wanted him to know that things weren’t completely back to normal sexually. In truth, nothing was back to normal, sexually or otherwise.
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“You’ve had sex already?”
“You said I could.”
“No, it’s fine. I mean, it’s great that your libido is strong.” Lying there, I wondered if it was my libido or my need to be a normal woman that had fueled my desire. Then she added, “It’s probably just the scar tissue from where we sewed you up. Give it another ten days and then try again.”
Doctor #9 took some tissue samples for biopsy, pulled off her gloves, and told me to get dressed as she reopened the curtain and sat down in the chair. That was when she said it. “I’ve been giving it some thought, and I think you should consider radiation treatment,” she blurted out. What did she just say? Did she just use the R word?
My heart sank as this emotional roller coaster continued. “You said everyone thought I was clean and no post-op treatment was necessary,” I insisted. Why had she said one thing and then taken it back? What had changed?
“I know, but I just wasn’t completely comfortable, so I called a colleague of mine in Wisconsin who specializes in uterine cancer. Wisconsin is the fattest state in the union, and because of all the obesity in women there they have an extremely high number of cases,” she rattled off. “Women who carry a lot of fat release higher levels of estrogen. And we all know unopposed estrogen is one of the causes of uterine cancer.”
Uh-huh . . .
Then she was quick to say, “Of course, I didn’t tell him it was you, simply that I had a patient whom pathology had determined to be at stage one/grade two of the disease. This colleague said he recommends radiation on all his patients. If you received the radiation, it would bring your percentage of nonrecurrence up from ninety-five to ninety-eight percent. If it were me, I’d do whatever it takes to better my odds.” If it were me? But it wasn’t her, it was me.
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I felt like vomiting. Less than a week ago, she’d told me I was essentially cured, and I hated that she was taking it back. I hated the very idea of radiation. I’m the one who never wanted to take a simple dental X ray, and now she was pushing me into radiation?
I wanted to know all the implications. What were the side effects, how long did the treatment take, and why did I need it?
“It’s really up to you,” she said. “If there’s recurrence, it would most likely be in the vaginal cuff, so that’s the only place we’d radiate.” What the hell was this woman saying? I didn’t even know I had a vaginal cuff! “Let me have you speak to the radiologist. He can answer all of your questions better than I,” she said, gathering her things and exiting as John and I remained in the room.
I felt wiped out by this new turn of events. Of course, it had been Doctor #9’s intention to be thorough and helpful by calling her colleague in Wisconsin. I just wish she’d thought of it before calling me to say I was cured and no further treatment was necessary. John and I waited for what seemed like an eternity but was probably half an hour. I worried about my parents in the waiting room, but we kept thinking the radiologist would be in at any moment and John wanted to be there for that. Few words were spoken as we sat and watched the clock tick.
Then the radiologist entered. His face seemed kind enough, and I was told his mother had had cancer, so he was genuine in his compassion, but there was something about him that made me uncomfortable. He wanted to examine me. There I was, already dressed and thinking we were just going to talk, but he was asking for an examination. Against my better judgment I dropped my pants again. Why did I do that? I wasn’t even sure I was going to go through with it. I didn’t know him, I didn’t want him touch-ing me. I felt vulnerable, violated. After a minute or
so he snapped off his gloves and I quickly grabbed for my pants to get dressed.
Everything he said filled me with revulsion. The radiation pro-9377 Cancer Schmancer 2/28/02 4:18 PM Page 160
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cedure would occur every other week for six treatments. The first time would take the longest, maybe three hours total, and thereafter about forty-five minutes. I’d need another X ray to determine the exact location of my bladder, my bowels, and the vaginal cuff, all three of which are extremely close together. Something would be shoved up my rectum, something else up my urethra to the bladder, and then the radiating wand (shaped like a tampon) would be inserted into my vagina. This type of radiation is called brachytherapy.
Poor women, I thought. Is there no attention paid toward making all this stuff less humiliating? The radiologist kept talking percentages. Ninety-five percent, ninety-seven percent, first-year recurrence, third-year recurrence, blah, blah, blah. Although only one in ten women actually needs this radiation to prevent recurrence, many doctors make it standard procedure. Nine women in ten are getting radiated for nothing.
“Does the treatment have side effects?” I questioned.
His answer was hair-raising. “Possible vaginal dryness. Vaginal bleeding. Vaginal shrinkage.”
“Vaginal shrinkage?”
“Yes, so you must have intercourse at least twice a week to maintain its shape.”
That sounded so strange to me. “What if you don’t have sex all the time?” I asked.
I was startled by his response. “In some cases, the vaginal canal can shrink in length, so if you don’t have regular sex, you’d have to use a dildo.”
“For how long?” I asked, and the whole thing crystallized for me when he said, “The rest of your life.” At that point I just shut down. I couldn’t listen to all these horrible things anymore. He said I needed to heal for a few more weeks before I could begin treatment anyway, and since he was taking a vacation, I had time 9377 Cancer Schmancer 2/28/02 4:18 PM Page 161
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to think about it. Yeah, right. Have a good vacation. Thanks but no thanks, I’m outta here.
By the time I left to get my parents, two hours had passed and they were beside themselves with worry. I was completely shell-shocked, could barely speak. It all seemed so unbelievable, partly because the surgery followed so quickly on the heels of the diagnosis that we’d only lived with the notion of cancer for about a week. I’d had the operation. They’d taken everything out. That’s it, it should be over. Only now, with the idea of radiation having been introduced, was the gravity of the situation fully brought home. The truth was, nothing was over.
As we sat around the tree-enclosed patio at Orso’s with my parents, Rachel, and Greg, I began to cry. I’d thought it was over.
I’d believed my doctor when she’d told me to “get on with my life.” I didn’t know the right thing to do—every alternative seemed frightening. When Elaine and Allan showed up, they were so happy and cheerful, ready to have a good lunch and toast to my good health. But within seconds they both realized something grave had happened and no one was celebrating.
“Honey, I’ll call Richard for you. He’s on the board at the City of Hope. Let’s see who he knows,” Elaine said, moving things along. And her instincts were right. This was a decision that needed to be made after I’d educated myself on it all: the brachytherapy, radiation versus no radiation, and, most important, other experts’ opinions. You don’t need to know someone in high places, though. Everything you need to know in terms of information is right there on the Internet. What a marvelous re-source that is!
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Surfing the Web
J u l y 1 0 – J u l y 1 7 , 2 0 0 0
the day after my first post-op exam, Operation Brachytherapy began! I wasn’t ready for the amount of energy I needed to pull off this research campaign, but what choice did I have? John immediately began surfing the Internet to find Web sites on everything. I lay in bed printing out gynecology pages from my WebTV.
The goal was to gather enough knowledge so we could make an informed decision. Within no time we had hospitals, numbers, e-mail addresses, fax lines, you name it.
Elaine’s friend Richard gave us the number of a head physician over at City of Hope. I put in a call to him immediately, dropped Richard’s name in the message I left, and anxiously awaited his response. Camelia spoke to a few contacts in high places who all seemed to agree that for anything regarding cancer, go to Sloan-Kettering in New York or M. D. Anderson in Houston. My cousin Susan had just sold a house to a famous radiologist who said the same thing.
When the doctor from City of Hope returned my call, he very kindly gave me the names and numbers of the doctors who were the heads of gynecologic oncology at both Sloan and M. D.
I thanked him profusely. He wished me luck then added, “You 9377 Cancer Schmancer 2/28/02 4:18 PM Page 164
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don’t want to ask too many people, because you’ll always end up with about half who tell you what you want to hear, and half who don’t.” Sage advice.
We placed calls and left messages everywhere. Camelia called my surgeon’s nurse for the name of the doctor in Wisconsin, and also requested that they fax copies of my pathology reports to me.
Whomever I spoke with was faxed those pages so they could read exactly what my condition was for their own evaluation.
Meanwhile, fresh samples from tissue removed during my surgery had been transported to Johns Hopkins (in Maryland) so that a uterine cancer pathologist could make his own determina-tion. When Doctor #9 had asked if I wanted, at my own expense, to get a second opinion, I’d emphatically said yes, and appreciated the suggestion. Why shouldn’t another expert look at it? Believe me, I felt better when the Hopkins report turned out to be exactly the same as the Cedars.
The stuff on the Internet really educated us on my type of cancer and the many different studies that had been done over the years of treatments for every different grade and stage of uterine cancer. There was no time to lose. Mom made the food we ate while John and I manned our keyboards. Over the next few days I started a file on all the information we’d gathered regarding my cancer. I went from feeling helpless to feeling empowered. In that sense the radiation treatment dilemma had its positive side. Not only did I familiarize myself with a battery of specialists who’re at the top of their fields, I also gained knowledge about my disease that I’d never have obtained otherwise. It was a revelation how much info there is waiting to tap into. I’ll never again get treated for even a hangnail without reading every piece of information available on the Internet.
There were Web pages full of women’s personal accounts of having been through radiation therapy. A lot of them said they 9377 Cancer Schmancer 2/28/02 4:18 PM Page 165
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wished their doctors had really explained to them just how long term the side effects were. One woman complained of having painful intercourse and bleeding five years after treatment. There was also a general sense of regret that receiving the radiation prolonged feelings of sickness for years after treatment. Women who couldn’t resume a normal, active sex life after surgery felt they’d made a bad situation worse.
The more I read, the less I thought the radiation was for me.
The side effects seemed severe, and the only part of my body where it might inhibit recurrence was the vaginal cuff, where the radiation would be focused. Even that wasn’t a guarantee, which was galling. Another major turnoff was that if cancer did show up somewhere else down the road, radiation was likely to be less effective the second time around.
I finally spoke with the doctor in Wisconsin whose comments had opened this whole can of worms, and was sure glad I did, because it cleared up a lot of confusion. What he
explained was that follow-up appointments with your physician are key to early detection of recurrence. Many of his patients lived on farms, however—some as far as three hundred miles away—and almost none of the women continued with their follow-up examinations after their release from the hospital. Because of this, he radiated all his patients as a precautionary treatment—not so much for the nine out of ten who’d never experience recurrence, but for the one in ten who would.
In my case, he felt I was not a candidate as long as I was diligent about going for my checkups every three months. What a relief!
Two doctors at Sloan-Kettering in New York each read my pathology reports and said adamantly that they wouldn’t suggest radiation for a stage-one/grade-two patient, but each reiterated the importance of follow-up exams.
M. D. Anderson had a slightly different response. The doctor 9377 Cancer Schmancer 2/28/02 4:18 PM Page 166
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down there thought radiation on the vaginal cuff would be prudent, since the tumor was so low in the uterus. “The odds are already stacked in your favor, so whatever you decide, it’s really a win–win situation. I don’t think there’s a right or wrong answer here,” he said, and then referred me to a gal in radiation who specialized in brachytherapy.
When that radiologist called back, she explained that at M. D.
Anderson they administer the radiation completely differently from Cedars. I found this strange. You would think there’d be a standard for this type of treatment, but there isn’t. Consequently, the type of radiation treatment a patient receives will vary not only from state to state, but hospital to hospital! Who knew?
The M. D. Anderson radiologist explained that at her hospital they use a more state-of-the-art machine that is specifically designed for the vaginal cuff. This renders the other instruments for the rectum and the bladder unnecessary. Also, they don’t drag it out over so many weeks. The radiologist said they’d do the treatment every other day over a period of ten days. Needless to say, if I decided to go forward with the radiation, I was going to Houston to do it. I said, “If I were your sister, what would you recommend?” Her answer was, “I’d probably say do it, but honestly, you never know what you’ll do until you’re actually in the situation.”
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