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My Story | Jax, Massachusetts, USA

Cervical cancer, Stage 1b
Radical hysterectomy, January 1999 at 52

My journey with cervical cancer, stage 1b, started with an abnormal pap in May of 1998. My primary care provider, a nurse, recommended that I see a gynecologist and be tested again.

I'd had one or two abnormal pap tests, which seemed to have righted themselves through the years. At 52 I didn't worry too much and agreed I'd see a specialist. It took until August to see a woman physician who came highly recommended. She took another Pap test. Several days later it came back as normal and I thought the episode was over. But the just slightly abnormal appearance of my cervix prompted her to suggest a biopsy.

I was terrified. Not of what might be found, but of the procedure! I knew doctors did this in their offices without anesthetic. Maybe it was the doctor who, while inserting a birth control coil in my cervix during my late teens, snorted in derision when I cried out in pain and asked me what I was going to do when I had babies, but my experience with people doing things to my cervix was not good. Only after the gynecologist promised she'd use a local anesthetic and would stop the procedure if it was too traumatic did I agree to have it done.

The biopsy was painless. My trust level with this physician went up. And the test came back normal.

My gynecologist had just attended a Montreal conference on Human Papilloma Virus (HPV.) She suggested that, just as a precaution, I be tested for HPV, explaining that 50-60 percent of American women carried the virus. She also explained that out of many, many strains, only a very few were dangerous. Dangerous? Yes, she explained, they were just now being judged as the primary reason for cervical cancer.

I don't think I really heard the words "cervical cancer." I just wanted to know if I was hosting another dangerous virus. I'd been diagnosed with Hepatitis C in 1991.

The test for HPV came back as the dangerous strain.

The gynecologist then suggested a cone biopsy, "just to make sure." Again I trembled. What the hell was a cone biopsy? She explained that she would take a round core of flesh out of my cervix for further examination - under general anesthetic if I chose. I suddenly relaxed. General anesthesia is my idea of experiencing a painful medical procedure. Basically, I think that if I die under general anesthetic it will be a really peaceful death, and as far as cutting, pulling or pushing body parts, well, I'd rather be asleep.

On December 9, a Friday, my gynecologist called and suggested I drop by her office after work. She was sure I wouldn't "want to wait until Monday to learn the results." I asked my significant other to go with me, a wee bit nervous over what I was going to hear. You could have knocked me off the chair with the proverbial feather when she said the word Cancer.

I'm so glad I had a friend with me! Evidently I stopped hearing anything after "cancer" was uttered. I remember the doctor and my partner becoming awfully sympathetic , and the phrase "terrible disease." Yes, I spent the remainder of the visit asking about prognosis and procedures just like a regular Ms. Marcus Welby; calm, inquisitive and alert. But, I felt like I was in an airlock on the starship Voyager.

I spent that weekend in a state that best be described as stunned. On Monday I saw the gyn-oncologist and learned that my cancer had been staged as a 1b and that a radical hysterectomy was considered curative in 85 to 95% of cases. I immediately focused on the potential 15.

I would have the surgery after Christmas, on January 26. I remember feeling lighter than air much of that time. As if my head was no longer attached to my body - until it came crashing back down on my neck and I sat stunned on the couch. While I was floating around I casually examined reasons for living. I read passages on Zen Buddhism. I made sure everyone had a lovely Christmas, wondering if it was my last. Only at night, after just lying down, did I tremble and weep in my partner's arms. I could not convince myself that at least an untimely death would obviate my fear about losing my mind to Alzheimer's or senility down the road.

I stalked the Internet. No news was too bad for me to devour. I wanted to know the absolute worst -- and it wasn't hard to find. Then, I got lucky. I found a listserv with women who'd either survived a gyencological cancer, or were going through procedures of their own.

Because I'd spent so much time at medical sites, I didn't have a slew of questions about diagnosis. I wanted to know what to expect from the hysterectomy. Whether anyone on the list was considered "cured" from the same stage cancer with the same procedure. How to handle the 'lighter than air' feeling. How to handle the 'stunned'. And how to handle the fear.

The women on the list gently welcomed me and began giving - their experience, their struggles and their support. I found myself sharing just about every nuance of what I was going through because it was all too tragic to lay on my friends and family. We, the women on the list, ate my tragedy and asked for someone else's pain. I began to celebrate a treatment success for someone else, while admitting I was too scared to do it in anything except the most superficial way. I think I probably waxed poetic.

They told me to take slide-on slippers to the hospital and pillows for the ride home. Shaking in my snow boots, I showed up early Wednesday morning, January 26, 1999 and proceeded to cry from Admitting to pre-surgery. Finally the nurse gave me a shot for 'relaxation.' I was wheeled down a corridor. That's all I remember until waking up to hear there was no lymph node involvement. The operation was a success.

Ouch! The blue plastic knob on the self-administered morphine pump plunged. Ooooooooooooo. I'm certain I want to sleep now. Yes, sleep. For a very long time....

But, there's no sleeping in a hospital! I shared a room with a critically ill woman on the far side to whom the diet, pain control, personal care attendants and nurses all called a loud and cheery "Hellllllloooo, Mrs. Brown!" upon entering the room. I gritted my teeth. Sleeeeeep. I want sleeeeeeep. The fourth time they did it I called the nurse to my bed. "Look," I said, "I know you're just trying to do your work." "That's right," she cooed. "But," I reasoned, "don't you think hospitals are a place for people to get well?" "Yes," she replied, "at least we hope so." "So," I replied, feeling sure the snare was almost sprung, "wouldn't you think that for someone who just came out of a major surgical procedure sleep would be ... ahem ... 'RESTORATIVE'?" "Oh, nobody sleeps in the hospital!", she sallied as she skipped out the door.

Two hours later I was up and walking with my catheter at my side. If I wasn't going to get any sleep in the hospital, I was going home at the first opportunity. First I went from the bed to the bathroom. Then from the bed to the chair. Then from the bed to the chair to the door. Then from the door into the hallway. By 9:00 that night I was walking from the door to the nurses' station. At 10:00 I went all the way around the square shaped second floor. I was too tired to answer the phone, but I walked!

I walked Thursday and Friday morning too. Then, mid-Friday morning, to my surprise, the hospital cut off my self-administered morphine. Directly after that rude shock, the doctor came to remove the tube draining my stomach wound. WITHOUT MORPHINE? I queried, as sweetly but firmly as possible. It was a horrible mistake. The otherworldly feeling of having a tube pulled out of my gut nearly made me throw up. But it was quick.

By 5:00 that afternoon I was up a flight of stairs and home in my own bed. By 10:00, completely weirded out by the entire experience, I wondered if I'd been released too soon. I just didn't feel safe. So I slept.

Saturday morning the flowers began to arrive. And the cards. By Tuesday I looked like I had a lot of friends. I was absolutely maudlin when the metallic balloons showed up. How often I'd neglected to send someone a simple get-well card. My partner gave me a printed out history of the emails from friends from the beginning of the ordeal. I chatted on the phone. I developed a jones for animal crackers. Daytime t.v. droned on in my sunny, flower-filled bedroom. For the next two weeks I quite happily did absolutely nothing at all socially redeeming.

I pretty much just hurt. I guzzled stool softeners, but the intestinal gas played heavy metal music while I was on the throne. I poured out my heart-felt vicodin love to my partner whenever he brought the Jell-O. I lay there with bed-hair and a second-hand housecoat covered in pink teddy bears while the sun came up and the sun went down. I took more vicodin.

Then I got back on the Internet! I probably could have gone back to work at the fourth week, but I decided to give myself some slack. I walked outside, played with my dog and reminded my partner that I probably wouldn't be able to shop for groceries or pick up anything heavy for 3 or 4 years. Besides, I was needed on the women's listserv. It was my focus as I healed.

At the beginning my doctors told me the greatest chance of recurrence is within 18 months. I will need to be checked every three months for the first two years, and every six months for the next three. They said five years out and we can begin to use the word 'remission.' I've had five of those 3-month checkups and so far, so good.

Some of us are information providers. Some of us talk from a good, true place that provides instant-reality-check for the rest of us. I'm more the type who is profoundly empathetic to the woman going through treatment or receiving her diagnosis for the first time. No matter what her politics, she's my sister. We are whooshing down the rabbit-hole called cancer together, grabbing vines as we roil by. Occasionally we find a a cozy cranny to hole up in. We can talk softly. Then we're off to whatever life is handing out. We are living with cancer.

May 2000