Suzie Siegel

A friend wrote a song about my cancer to the tune of “Jambalaya (on the Bayou).” I wasn’t offended. I say: Bring on the silly songs and jokes. People have a hard time talking about cancer and death. But what’s the point of all this suffering if we can’t laugh occasionally? Plus, I know my cancer has a musical name: leiomyosarcoma, pronounced “lie-oh-my-oh-sar-koh-ma.” Me oh my oh.

During the worst of it, I thought: I’d do stand-up, if I could stand up. I would take this on the road, but I’d need a driver. One friend says I have gone from being outrageous to courageous. But I’m no hero. I didn’t run into a burning building to save someone. A better analogy is: I found myself in a burning building and ran out. I’m not St. Suzie, the cancer martyr. Nor am I Suzie Sunshine. I spend plenty of time in bed, with the covers over my head. I’m thinking of buying snorkel gear.
           
Psychiatrist Jimmie Holland, a pioneer in cancer treatment, has seen no evidence that a positive outlook guarantees a positive outcome. She calls this “the tyranny of positive thinking” in her book “The Human Side of Cancer.” A review of 30 studies, printed in 2002 in the British Medical Journal, came to the same conclusion: “People with cancer should not feel pressured into adopting particular coping styles (including 'positive thinking') to improve survival or reduce the risk of recurrence." Nevertheless, as Holland says, a good attitude does have advantages: People may be motivated to seek and complete treatment. Plus, life is more fun if you can wear a multicolored tinsel wig to chemotherapy.

I decided to talk about my experiences to combat the shame people feel about their bodies. That shame often stands in the way of early diagnosis. People will whisper about you anyway; they may as well have the correct information. If you have a very rare gynecologic cancer in a teaching hospital, trust me, you get over your embarrassment. There’s always room for one more resident.

My original tumor grew in my vagina, but leiomyosarcoma can occur almost any place in the body. It has been linked to radiation, certain chemicals and a few genetic mutations. Other than that, we know little about what causes it. When people ask how I got it, I’m tempted to say I stood too close to the microwave. Or, maybe I shouldn’t have used a uranium-powered vibrator.  For every 1 million people, there will be four new cases of leiomyosarcoma each year. I hit the cancer lottery. When they hear the news, some people say, “How terrible!” I long to respond, “Wow, thanks for clarifying this. I didn’t realize cancer was bad.”

Many suggest a different diet or home remedies. After being encouraged to consume scaly anteater bile, I got fed up. Some New-Age types suggest I got cancer to learn a lesson. The lesson must be tolerance. Others feverishly try to convert me to their brand of Christianity. If they were in the hospital, would they be comforted if I dropped off a pamphlet saying converting to another religion would ease their pain? I understand friends intend the best when they pray for me. “If you think it might help, I will pray for you,” one friend emailed. “I don't usually pray except for monetary gain or casual sex opportunities... .”

My friends have been terrific: visiting, sending cards and chocolate, donating to the Sarcoma Alliance, massaging my feet, pushing me in wheelchairs, driving me to doctor’s visits, waiting with me in emergency rooms, and sleeping in hospital rooms with me.
           
I want to start a cancer gift registry, like a bridal registry. Some people say their cancer has been a gift because it made them appreciate life more, yada yada yada. To me, a gift is a big box of chocolate or an envelope of cash. My cancer first appeared as a cyst, which I was assured was benign. A physician’s assistant said I could have it removed, but probably didn’t need to.

In my life B.C. (Before Cancer), I rarely got sick. I thought doctors did a lot of unnecessary surgery. A.D. (After Diagnosis), I believe that people should have everything lopped off or cut out that they aren’t using. Take out the appendix, the tonsils, any reproductive organs you don’t plan to use. Sarcoma can make you a great believer in surgery.  When I left Tampa in early 2002, the cyst was still small enough that a lover didn’t detect it. I’ve come to believe that, if a partner doesn’t notice an unusual lump or bump on your body, you probably need a new partner. I moved back to my native Texas to help care for my father, who had Alzheimer’s. Because of our country’s strong family values, insurance companies considered me unemployed, and I had a hard time getting coverage. (When I die, I want my ashes sprinkled in the coffee cups of insurance executives. Let them taste my bitterness.)

In May, I began bleeding between periods. A gynecologist told me that the cyst looked like cancer. I told her that my insurance would start July 1. She told me I could wait, even when I complained a couple of weeks later that the symptoms had worsened.

I should have gotten a second opinion, or I should have urged the doctor to remove the tumor as soon as possible. But I was surrounded by positive thinkers who told me that it was probably just a fibroid. My sister worked for the only doctor in our small town, and he reassured me that the tumor was growing so fast that it must be benign. Actually, it grew from 1 centimeter to 12 in two months because it was very high grade, primo cancer, with a mitotic index of 52/10.

I’m on an international online list for leiomyosarcoma, and we have more than 700 members. I can’t remember anyone who got the correct diagnosis and treatment right off the bat. It’s like the Spanish Inquisition – no one suspects sarcoma.

Luckily, I had distractions. I thought my brother-in-law would kill me first. To get away from him, I bought a house in a nearby city and moved my father and myself. One night when my brother-in-law was gone, my sister’s friends descended on her trailer, packed up as much as they could, and fled with her, her teenage son, and their St. Bernard.          At my sister’s divorce, I said that, if a link is ever proven between stress and cancer, I want her ex sued for manslaughter.

Meanwhile, my tumor had grown so big that it would poke outside my body and I’d have to stuff it back in. I thought I’d have to switch to men’s underwear. I smelled like rotting flesh because … my flesh was rotting. (Parts of the tumor were dying.) The dog sniffed me rapturously, but then again, St. Bernards were bred to find bodies. 

July finally arrived, along with surgery, or, as I like to refer to it, female genital mutilation. A surgeon removed my ovaries and uterus and “obliterated” my vagina, according to the medical report. The morphine almost made up for it.

“They took out my vagina,” I wailed to any hapless soul who entered my hospital room, whether longtime friend, ancient nun, or woman mopping the floor.

If a man had to have his penis removed, I imagine a surgeon would wake him on the operating table and ask, “Should we just let you die?” But no one came to counsel me. There’s a ton of material to reassure women who have lost a breast or their uterus. But if you lose your vagina, there is nothing. (“Lose’ is a strange term. One friend says he’ll be looking for my vagina on eBay.)

Many friends could not understand how my vagina could be removed. They didn’t think of it as an organ, simply an opening into the body. I had to perform a “No-Vagina Monologue.” Many people also equate the vagina with all female genitalia. I end up explaining that I look fairly normal on the outside; there’s just not much inside anymore.

My vaginette can stretch to 6 centimeters. When I learned I had about a 60 percent chance of dying in the first two years, I thought of running a personal ad for a “small man for a short-term relationship.” Vaginal cancer is not a big draw for dates. Cancer centers should have singles mixers. The Internet needs dating sites called INeedACaregiver.com. Some men prey on women with disabilities, telling them that other men won’t want them. A married nurse gave me that line.

Some doctors assumed my sex life was over. I guess they missed Clinton’s impeachment hearings. Even a gay male friend asked, “Just how DOES one have sex without a vagina?” People who lack imagination or have a limited definition of sex may find the American Cancer Society’s “Sexuality and Cancer” booklet especially helpful. An ACS support group once held a discussion of the topic, but used the unfortunate title “Cuddling With Cancer.”

I had some of the best sex of my life after surgery because men had to ask what might please me. They couldn’t just dive in. I boast that I had sex while I still had a Foley catheter, but I can’t beat the LMSer who had sex in her hospital bed after lung surgery. My surgeon, a gynecologic oncologist, shared my sense of humor. He hugged me one day, saying, “You know I love you, don’t you? But I’m too big for you."

He came from a family of grocers, and he said he thumped tumors like melons. He knew I had a sarcoma, but my first pathology report misdiagnosed me. Tumor samples were sent to pathologists trained in sarcoma to confirm that I had leiomyosarcoma.

I felt the need to alphabetize CDs and arrange clothes by color and type – anything to bring order into my life, after reading my pathology reports. One described cells of diverse shapes and sizes, uncontrolled and unorganized – my politics encoded in damaged DNA!  Nerves had gotten cut during surgery, and I lost the capacity to urinate on my own. I tried running water in the sink, sticking my hand under the stream, visualizing waterfalls, all for naught. Once my surgeon stood outside the restroom, making “swish, swish, swish” sounds to inspire me.

For almost four months, I remained catheterized and carried a bag. I attached silk straps, as if it were a purse. My father's accountant drawled: "Don't let my wife see that. She'll want one." To go to a fancy restaurant, I once strapped a “Texas” catheter to my leg, like a holster under my dress. On the drive there, I had great pain. In desperation, I emptied the bag in a church parking lot. May the Lord forgive me.

My mobility had a downside: I often caught the catheter tube on cabinet knobs around my house. Ouch. Perhaps because of this, I passed a lot of tissue and blood. Sometimes the catheter bag looked like a fish tank.

Some people studied the contents as if they were doing quality control in a brewery. “Are you drinking enough?” they would ask. I remained catheterized throughout six weeks of radiation. Yes, I know it’s ironic that a cancer that can be caused by radiation is treated with radiation sometimes. The hope is that radiation will kill any stray cells that remain. I was given pamphlets that answered questions, such as: Will I be radioactive?

When I was first marked up, I had to lie on a narrow black table with my face in a plastic form. The radiators (not the official term) pulled up my dress, spread my legs, bound my feet, and stuck another plastic form in my vaginette. My muffled voice called out, “Is this what happens when you’re abducted by aliens?” The radiators drew on my flesh to indicate where the radiation would go. Queequeg (from “Moby Dick”) couldn’t have had more tattoos on his butt. On my last day, I thought of turning the circles into smiley faces.

An ex-boyfriend came from Washington, D.C., to drive me to daily treatments. We often got looks from passers-by. I would ask him, “Do you think it’s because we’re an interracial couple? Is it because I’m carrying a catheter bag like a purse? Is it because you’re a black man with both dreadlocks and cowboy boots? Or are we just that damn good-looking?”

Radiation burned my once-private parts. I had one of those tri-colored monkey butts you see in zoos. When I sat in a Sitz bath, my friend would perch on the tub and serenade me with his guitar. After I took a shower, he would use a blow dryer on me because a nurse had warned that my flesh was too tender for a towel.
The nurse also recommended “air therapy,” in which I was to expose my burned parts to the air. As my friend drove home after treatment each day, I’d hike my dress up. I’m glad I didn’t make any trucks jackknife on the interstate.

I was dating a psychology professor who stopped calling after I was diagnosed with cancer. I later saw him in a bookstore: As I tried to maintain my dignity, my catheter bag leaked, filling one of my shoes with urine. The next day, I told the others waiting for radiation, and they yelped, "Hahahahaha, she tried to go to a bookstore."

Radiation and chemotherapy can make you feel fatigued, like the people in Purgatory who have to wear lead coats. After radiation, nurses taught me to self-catheterize, which involves sticking something like a straw up your urethra to your bladder. I had never paid much attention to my urethra. At first, it was like “Where’s Waldo?” I urinated on the first nurse. The second nurse took me into a restroom and we huddled over the toilet. She drawled, “People are going to think we’re lesbian lovers.”

I now have self-contained DIY catheters that I’ve used in cars. My bladder has made a great recovery, but I still catheterize once a day. I’m such a pro that I can do it one-handed. I can do it drunk in the dark.

In January 2003, I learned that the cancer had cropped up in my right lung. This meant that I was now incurable and that the cancer will keep recurring till I die. Why do I always get news like this at dinner parties? I need to turn off my cell phone.

Some people do well with denial. Others feel a need to get their affairs in order. In addition to legal documents, I have about 10 pages of instructions, including who gets which knickknack. After the Terri Schiavo case, I added three more pages to my living will, specifying that I don’t like the covers tucked in or the TV left on.

When patients understand their prognosis, they can make better decisions. For example, I’m spending my retirement money now. Most people don’t realize that there are many kinds of cancer and many factors affecting prognosis. I have to suffer through people relating the story of someone they know who beat cancer. I want to yell, “My situation is completely different.” Others relate the painful death of a friend or relative, and I end up having to console them.

My new diagnosis qualified me for Social Security Disability. I sent my caseworker an effusive thank-you letter, and he began sending emails signed “un mil besos” – “a thousand kisses.” We had a few long chats, including one in which he described his erectile dysfunction, but despite my sympathy, he dumped me. I still get a check every month, and that’s what counts.   

I had eight rounds of Gemzar + Taxotere, followed by five rounds of Gemzar alone.  At times, my immune system was so compromised that I couldn’t go out in public. Thus commenced the Chemo Film Festival, in which I watched many movies on TV and the entire four-season “Farscape” series three times.

On my online list, I posted a warning: “Ask your doctor about having sex if your white blood count is down from chemo.” A female physician responded tongue-in-cheek: “All my doctors are either women, married, or related to me. Are you SURE this is a good idea?”

In public, I sometimes traveled via the Poor White Trash wheelchair that had an old board for a footrest. Medicare provides equipment such as wheelchairs, but you have to be on Social Security Disability for two years before qualifying for Medicare. Maybe the government hopes you will die in two years and thus, save it some money. If stores provided scooters, I hopped in. Here’s my take on disability rights: Get out of my way or I will run you down.

Although I had treatment in Dallas, I went to the enormous M.D. Anderson Cancer Center in Houston – the Magic Kingdom of Cancer – to see a sarcoma specialist. A veteran on my online support group had recommended patients see a "sarc-savvy onc."  That would be a sarcoma-savvy oncologist. I keep trying to come up with a poem rhyming "sarc-savvy onc" with "sauvignon blanc."

Sometimes a friend drove me to Houston. I regret not buying a cap at Woody's, the Jerky Capital of the World, along the way. My friend is handsome, and riding with him was hot. Then cold. Then hot again. Damn this surgical menopause!  Chemo also can affect the body's thermostat. Once, when we went to the nearby Gulf, I walked along the beach, shivering and griping about the bitter cold, even though it was about 68 degrees.

I got CT scans – or “CT scams,” as one friend joked – every three months at Anderson. I had to drink three heaping helpings of barium, which looks like a pina colada and tastes like chalk. Then radioactive iodine was shot into my veins.
           
I got blasé. Once, a nurse put in my IV on top of the Christmas cards I was writing. I also had to have barium enemas for the scans. I learned: Don't wear white silk pants on the day you get a barium enema. At least they were my sister's.
      
I attended a discussion on “chemo brain,” but can't remember what the professor said. Actually, chemo can lessen your ability to make sense of the world, at least temporarily. At Anderson’s volunteer center, I stuffed myself on cookies before heading to my appointment with the nutritionist.

Before I started chemo, I had a port implanted under the skin of my chest. For chemo, a needle was plunged in, sort of like getting gas at a service station. In addition to getting and removing the port, I was hospitalized twice during chemo. Once I was dehydrated. Another time, I was badly anemic and needed a transfusion. I had gotten to the emergency room early and nabbed a little waiting room. But the staff asked if I would switch places with a young woman in a curtained area who had been screaming like a tornado siren.

After various tests, someone came to my curtain and told me it was time to talk to the chaplain. Terrified, I refused to budge. Finally, we figured out that she was looking for the screaming woman, whose spot I was occupying.

I had almost every side effect imaginable during chemo. Sometimes I had a rash on my face, and people would tell me: "You look good – you've got some color in your face today." I lost every single hair on my body. I looked like a naked mole rat or Gollum with glasses. In the American Cancer Society’s program “Look Good, Feel Better,” I learned to draw on eyebrows and other tricks. But my attitude remained: "I look good? I feel bad!" Whenever someone told me I looked good, I made a mental note: "Never trust this person's judgment again." Some people would look with pity. I thought of getting a T-shirt that read, “I’m going to die” on the front. The back would say, “And so are you.”

For special occasions, a friend bought me a long red-haired wig. My real hair is black. When it started growing back, I had a 5 o'clock shadow that made me look like Eddie Munster. As the hair grew, I felt I had gone undercover for “Lesbian Like Me.” People would run their hands over my head, saying the new hair was “smooth as a baby’s bottom.” They must have some hairy kids.

In December 2003, my lungs were clear, and I stopped chemo. A few months later, they were spotted like a leopard. The doctors didn’t know if these tiny spots were active cancer, dead tissue, scar tissue or hairballs.

Instead of treatment, I traveled throughout 2004, at the courtesy of a friend who works at an airline. Because I flew standby, I got bumped a few times. Once, a group of us decided to drive from Dallas to Houston to catch connections. It was four women and the smallest, ugliest, costliest dog I had ever seen. To save time, I said I could catheterize in the car, but no, the car’s owner insisted we stop at the Jerky Capital.

I catheterized on a Los Angeles freeway as a friend drove me to an ER with yet another bladder infection. I hope I don’t have to pay for her son’s therapy.  The trip turned into a tour of L.A. restrooms. My friend Dave would point out crashing surf, for example, and I’d have a wild look in my eyes, scanning the countryside for a restroom.

Dave and I attended the Leiomyosarcoma Hugfest in Cherry Hill, N.J. We later rendezvoused at the Connective Tissue Oncology Society meeting in Montreal. At CTOS, I was misbehaving as usual, and I told one doctor, “If you think I’m bad now, wait till they give me six months to live.” He gave me his card and said dryly, “Call me when that happens.”

After my father’s death in August 2004, I moved back to Tampa to be among friends. In-between hurricanes, I settled into an apartment near the Moffitt Cancer Center, which has a sarcoma program. A nervous wreck, I tried to see a therapist there. I think a person could call from a red, emergency phone at the top of the Sunshine Skyway bridge, and a receptionist would still say: “I can squeeze you in in two months.” Life got better in October, when CT scans showed my lungs clear.

At an excruciating pelvic exam, however, I discovered I had the Incredible Shrinking Vagina. I had been told to use a dilator (like a vibrator without the batteries) for a year after radiation. At Moffitt, however, I learned that I would have to use a dilator for the rest of my life.  Using every position in the Kama Sutra, I tried to stuff in my old dilator. I had to settle for one the size of my pinkie. I have worked myself up to the next size. I put on so much Vitamin E/moisturizer/lubricant/ointment that sometimes I feel like I’m slip-sliding away. Nevertheless, the atrophy is so bad that sometimes my skin just tears. I was satisfied with the orifices I had; I don’t need to keep ripping myself new ones. 

After having CT scans at least every three months for the past three years, I had an allergic reaction to the iodine in July 2005. What’s worse, the scans revealed another lung metastasis. I had surgery on the anniversary of my father’s death.

Lying on the operating table, I told the staff that I had just become a Moffitt volunteer. "Do I get 10 percent off?" I asked.
   
Afterward, I had a tube in my chest, pumping out blood and other fluid. It was connected to a machine that sounded like a babbling brook. It lulled me to sleep.
          
The next day, I was eating vegetarian lasagna and strolling the halls with a walker. Monday morning, as I strolled, the head of inpatient nursing spotted me. She knew me only as a volunteer.

 "Are you a patient here?" she asked incredulously.

 "No, I'm working undercover," I said. Then I looked at my hospital gown in surprise and said, "I thought this was stylish. Does it make me look like a patient??"
      
 Around 2 a.m., I got into a long philosophical discussion with the night nurse about cancer being an adventure. About an hour later, when I was alone, I started coughing. I coughed up stuff that would have been respected as a new life form on “Star Trek.”  Coughing is good, I had been told, and so I kept doing it, in hopes of clearing my lungs. Then, I couldn't stop coughing. Then, I couldn't catch my breath. My chest hurt. I called the nurse and all hell broke loose. 
The possibilities included that I was having a heart attack or that one of my lungs had collapsed. During blood draws, an X-ray, an electrocardiogram and other tests, I wrote a note to the nurse: "This isn't fun anymore." The problem turned out to be too much coughing.

Although I'm allergic to Tegaderm (the usual medical tape), I acquiesced to it, for fear my epidural would fall out. The tape left welts around my torso like an aerial view of farm country.
   
Daily heparin shots left bruises of various shapes and sizes on my stomach. A nurse told me that I might want to connect the dots to see what picture emerged. My thigh-high TED hose cut into my skin, leaving marks for weeks. I was sent home with a post-op booklet that advised: “Sexual activity is like exercise. Your capacity to tolerate it will return as you continue your recovery.” If I’m just tolerating sex, I’m not going to do it.

For my November scans, I was drugged on steroids and Benadryl, but still had an allergic reaction. A doctor asked, “What symptoms are you having?” In between sneezes, I said, “Normally, I don’t have a bright red stripe down the center of my face or red dots over my entire body.”   The allergy to iodine means no more all-you-can-eat lobster feasts. But it also means I never have to drink barium again. The tradeoff is worth it.

Now I get a chest CT “without contrast” and MRIs of my abdomen and pelvis. An MRI is like lying in a metal pipe during a performance of “Stomp.”

A week after my scans, I gave a speech at the county medical association banquet on “Sex and Death: Two Topics Doctors Have Difficulty Discussing With Their Patients.”  Also in November 2005, I learned I had osteoporosis, stemming from the radiation and early menopause. I was told: “Try not to fall down.” A week later, while tangoing doctors threw me around the dance floor at the Connective Tissue Oncology Society meeting in Boca Raton, I was reassured knowing there had to be at least a dozen orthopedic surgeons in the room.

Once again, I was in remission and living the good life. But I still have to get scans every three months, and every three months, I wonder: Can I do such-and-such or will I be undergoing some sort of treatment? Will my scans be clear or will there be 150 mets this time? I live my life in three-month intervals.

There are pamphlets and programs for people who want to prevent cancer, who are newly diagnosed, who are in different kinds of treatment, who are dying, or who hope to be cured. But I never see anything for people like me who live with the idea that it’s only a matter of time before we will have to return to treatment.

 In February 2006, another LMS patient and I accosted Dr. Judah Folkman, a  famous Harvard researcher who came to Moffitt to accept an award. His lab sent us boxes of ice in which to send him urine samples for his experiments. Now I can say, “I went to the University of South Florida, but my urine went to Harvard.”
Because I know how to have fun, I met my friend Dave at the annual conference of the Society of Gynecologic Oncologists in March 2006 in Palm Springs. The doctors greeted us warmly, and snow fell on the Mojave Desert. Draw whatever conclusions you want.

A doctor there wrote up my case for the International Journal of Gynecological Cancer. 

By April, I had forgotten the advice about falling down. While dusting on high, I fell and broke my fall by breaking my wrist. When I got my cast off seven weeks later, I called my friend’s home and his partner answered. I yelped, “I got my cast off! I got my cast off!”

“Um, OK,” he said.

“Aren’t you excited?” I asked excitedly.

Him: “Um, you’ve got your pants off?”

In June 2006, I did have my pants off. I had a cystoscopy, which entailed a urologist sticking a telescope-like tube up my urethra. He had told me that this hurt men, but not women. Perhaps he got this impression because there’s not one female urologist in town. I was still crying in pain when he held up the gizmo and said, “It’s out now.”  (In fairness, I did hurt all day.) He tried to comfort me by suggesting I trust the man upstairs. I wanted to wail, “Is he a better urologist???”

I switched to another urologist who biopsied a big ulcer in my bladder. In pre-op, a Vancomycin drip caused patches of magenta to appear on my face. As if I were trick or treating, I carried my IV bags to the nurses’ station to suggest that I might be having a reaction.

The biopsy came back benign. My bladder’s just irritated. “Well,” I’d like to tell it, “join the club.”