Suzie Siegel

In 2003, in my red-haired wig.

A friend wrote a song about my cancer to the tune of “Jambalaya (on the Bayou).” Bring on the silly songs and jokes! 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: I found myself in a burning building and am struggling to get 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.

For every 1 million people, there will be four new cases of leiomyosarcoma each year. I hit the cancer lottery. My original tumor grew in my vagina, but LMS can occur almost anywhere in the body. It has been linked to radiation, certain chemicals and a few genetic mutations. Other than that, we know little about the causes. When people ask how I got it, I say I stood too close to the microwave, or I shouldn’t have used a uranium-powered vibrator.

Many people have suggested 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.

My cancer first appeared as a cyst, which I was assured was benign. A physician’s assistant said I didn’t need to have it removed. 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, you probably need a new partner.

At age 43, 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, and that it would cover pre-existing conditions. She told me I could wait, even when I complained a couple of weeks later that the symptoms had worsened. My sister worked for the only doctor in our small town, and he reassured me that the tumor was growing so fast that it was probably 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 should have gotten a second opinion. Few sarcoma patients get the correct diagnosis and treatment right away. It’s like the Spanish Inquisition – nobody 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, the tumor grew so big that it poked out of my body. 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 call 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 close 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, and there were no pink teddy bears to assure me I was still a woman.

Many friends could not understand how part of 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 explain that I look normal on the outside; there’s just not much inside anymore.

My vaginette can stretch to 6 cm. 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.

My surgeon 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.”

Some people 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?” Actually, I had some of the best sex of my life after surgery because men had to ask what might please me, instead of just diving in.

My first pathology misdiagnosed me, but the third confirmed the second. It 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.”

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 color of the urine as if doing quality control at a brewery. “Are you drinking enough?” they would ask.

I had dated a psychology professor who stopped calling after I was diagnosed with cancer. I later saw him in a bookstore. As he approached, my catheter bag leaked, filling one of my shoes with urine. I barked at him to get some paper towels. Dignity is overrated.

During this time, I had six weeks of radiation. Yes, I know it’s ironic that a cancer that can be caused by radiation is treated with radiation sometimes. I was given pamphlets that answered questions, such as: Will I be radioactive?

The radiators (not the official term) drew on my flesh to indicate where the radiation would go. I had to lie on a narrow black table with my face in a plastic form.  They 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?”

A friend drove me to daily treatments, and 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 until they looked like a rainbow-colored monkey butt. After I took a shower, my friend would use a blow dryer on me because a nurse had warned that my flesh was too tender for a towel. She 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 no trucks jackknifed on the interstate.

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 took me into a restroom and huddled over me huddling over the toilet, as if we were about to jump from an airplane in tandem.

My bladder recovered enough that I had to catheterize only once a day. I became such a pro that I could do it one-handed in the dark. I used female, self-lubricating catheters, which a sales rep described as “lubricious.” (That’s your word for the day.) For one exam, I forgot to bring a catheter, and I had to use a long, red-rubber male cath. Using one to fill a specimen cup is like snake-charming if you’re a woman.

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

When hearing the news, some people detail the painful death of a friend or relative with cancer, and I end up consoling them. Others relate the story of someone who survived a different cancer, usually a more curable type. If I argue that my situation is different, they urge me to be positive and hope for the best. But I can do both: I can educate myself about leiomyosarcoma while still hoping for the best.

After being diagnosed with cancer, some people 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. I would hate to die with “The Bachelor” on.

When patients understand their prognosis, they can make better decisions. For example, I’m spending my retirement money now.

My new diagnosis qualified me for Social Security Disability Insurance payments. I sent my caseworker an effusive thank-you letter, and he began signing emails “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 movies on TV and the entire four-season “Farscape” series three times.

In public, I sometimes traveled via the Poor White Trash wheelchair that had an old board for a footrest. 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.

Medicare provides equipment such as wheelchairs, but you have to be on Social Security Disability for two years before qualifying for Medicare. Maybe Congress hopes you’ll die in the meantime, saving it some money.

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. Sometimes a friend drove me. He’s 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 every three months at Anderson. I had to drink three heaping helpings of barium, which looks like a pina colada and tastes like chalk. Never much of a drinker, I learned to chug it. I didn’t want to savor the taste. I also had to have barium enemas. I learned: Don’t wear white silk pants on the day you get a barium enema. At least they were my sister’s.

Before I started chemo, I had a port implanted under the skin of my chest. (It was removed a year later, but I still have a faint scar. When men stare at my chest in hospitals, they aren’t admiring my cleavage. They’re wondering if I still have a port.) A chemo nurse could easily plunge a needle into my port, sort of like getting gas at a service station. This is much better than having a nurse wrap my arm in warm blankets, hang it down, thump it, tie a tourniquet until my arm turns red or stick the needle in and move it around in hopes of hitting a gusher.

I was hospitalized twice during chemo. Once I was dehydrated, and my blood pressure fell to 60/30. On the phone, my doctor told me to go to the nearest ER “and try to drink something on the way.”

Another time, I was badly anemic and needed a transfusion. I had scored a little curtained room in the ER. Later, the staff asked if I would switch places with a young screaming woman stuck in the lobby. 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.”

My hair had started growing back after chemo.

When my hair 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, 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. To save time, I said I could catheterize in the car, but no, the car’s owner insisted we stop at Woody’s, the Jerky Capital of the World.

I could catheterize myself using a self-contained system, like peeing in a very expensive bag. Once in Los Angeles, I was double-overed with the pain. A friend headed to the nearest ER, while I cathed on the freeway. Her young son was in the back; I hope I don’t have to pay for his therapy some day. I took a Vicodin but pretended to still be in pain in the ER. Otherwise, I’d still be there.

I attended the Leiomyosarcoma Hugfest and the Connective Tissue Oncology Society meeting in 2004. At the latter, 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, “Call me when that happens.”

After my father’s death in August, I moved back to Tampa in-between hurricanes. 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 the Moffitt Cancer Center, I had an excruciating pelvic exam by a Nobel Peace Prize winner, in which 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. I should have been told to use it 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. Despite vitamin E/moisturizer/lubricant/ointment, 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.

(I later gave up on sexual contact of any sort and settled into middle-age with a Chihuahua.)

After having CT scans at least every three months for the past three years, I had an allergic reaction to the iodine that gets shot into your veins. That was July 2005, and what was 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.

I awoke with 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. 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 next scans, I was drugged on steroids and Benadryl, but still had a 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.”

I no longer had to drink barium. Woohoo! I graduated to a chest CT “without contrast” and an MRI of my abdomen and pelvis. An MRI is like lying in a metal pipe during a performance of “Stomp.”

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 CTOS meeting in Boca Raton, I was reassured knowing there had to be dozens of orthopedic surgeons in the room.

Once again, I was in remission and living the good life. But every three months, I still wondered: 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 lived my life in three-month intervals.

In February 2006, another LMS survivor 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 Missouri, but my urine went to Harvard.”

In March, another advocate and I attended the annual conference of the Society of Gynecologic Oncologists in in Palm Springs. The doctors greeted us warmly, and snow fell on the Mojave Desert. Draw whatever conclusions you want.

I met a doctor there who later wrote up my case for the International Journal of Gynecological Cancer. To hell with anonymity, I wanted him to use a photo of my smiling face, not an image of my lungs.

By April, I had forgotten the advice about falling down. While dusting on high, I fell and broke my fall by breaking my wrist.

In June, 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 was 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 but irritated. Join the club.

My urinary-tract infections began to increase, along with my drug-seeking behavior. “Can I try another antibiotic?” I would implore. The infections grew resistant, and I was put on a daily antibiotic, which meant limiting my time in the sun. I looked like a vampire who needed to pee all the time.

Vicodin also was prescribed to ease the spasms and pain. In case you haven’t noticed, I don’t have a lot of inhibitions. On Vicodin at one sarcoma conference, I bounced up to two rock-star doctors, asking one, “Remember me? We danced to ‘Dancing Queen’ at the 2007 CTOS.”  To the other, I said seriously, “If I leave during your presentation, it’s just because I have another bladder infection.” He replied drily: “Thanks for sharing.”

In 2008, at the annual meeting of the Society of Gynecologic Oncology.

Next came incontinence. In the middle of the night, I’d have to change my sheets, take a shower and wash off my Chihuahua. Pull-up diapers made my life easier — they’re not just for astronauts anymore.

I was prescribed Ditropan, which made my mouth as dry as the Dust Bowl. Sometimes my mouth was so dry that I feared the parts would stick together. Sometimes I went back to sleep with a cough drop in my mouth. It would have been sad to survive metastatic sarcoma only to choke to death on a cough drop. I finally called my dentist’s office, and the staff recommended various products that relieve dry mouth.

How many urologists did it take to fix my bladder? I went to No. 5 after struggling with a UTI for a month. He specialized in women, and it was a relief not to be the only woman in a waiting room full of men with erectile dysfunction.

I have had three urodynamics tests, with a special catheter in my urethra, a drape to collect any leaked urine, another catheter and balloon in my rectum, and an electrode on my perineum. I can’t believe I once had a shy bladder. By then, my bladder was like whatev.

I returned to an earlier urologist, and took a Vicodin for my next cystoscopy, in an office in which you could watch the scope traveling up to the bladder. It was like “Fantastic Voyage.”

I still couldn’t decide whether or not to have my bladder removed. Finally, I consulted a tarot-card reader, who turned out to be a retired RN. She assured me that I would be better off having surgery. That’s what I did in February 2010.

Before surgery, I had the infamous daylong bowel prep, in which neighbors a block away had to light scented candles.

In the surgery, a piece of intestine was fashioned into new plumbing that exits my abdomen. An “appliance” attaches to it. Not just any toaster or juicer, of course, but a plastic thingy in which you attach a disposable bag. On the bottom is a faucet. I learned to tuck it into big white undies so that it wouldn’t stick up like a tiny teenage penis.

My bag brought many benefits: I could go on vacations and see more than restrooms. I could sit through a long movie, sipping a 24-oz. drink, letting my bag warm my lap, without dashing out in the middle, as if I were competing in an Olympic event. I could  save money because I no longer rushed into stores, yelling, “I’ll buy anything if you let me use your restroom!” I went down a size in pants when I stopped wearing diapers.

Once, I kept a plane from taking off because I went to the restroom, while the pilot chastised me over the intercom. After that, I always flew on Vicodin to ensure bladder spasms wouldn’t get me in trouble. When I no longer needed narcotics, I found out why people complain about modern air travel.

In May 2010, I started having partial small-bowel blockages, caused by adhesions from my surgery. From then till June 2011, I went to the hospital a dozen times. What was my level of pain on that chart with smiley faces? I said through clenched teeth: “Give me drugs or shoot me.”

I became Vomitina, throwing up with the force of a fire hose. I only wish I had used my superpowers for good. I could have visited an old boss and projectile vomited all over her office. Sometimes I’d fall asleep with my face partially in a pink basin, just in case. I went back to wearing diapers because of bowel incontinence. Some nights I just slept in the bathtub. When people asked how I was doing, I’d say, “I’m full of crap.”

Doctors put me on a low-fiber, low-residue diet, which I called the American diet. They prescribed morphine and phenergan suppositories to give me relief before a friend or an ambulance could take me to a hospital. An ER doctor would then patiently explain that narcotics cause constipation. I would have to convince him that I hadn’t taken morphine in weeks; I had only just taken it a few hours ago. I want a T-shirt that reads, “I’m a cancer patient, not a drug addict.” (I also have an idea for a hospital T-shirt: “Yes, I want a warm blanket! Yes, I want a cup of ice!”)

One time, I spent five hours in an ER. I put in another morphine suppository while lying on the floor. A friend called Moffitt, and a female fellow let me come over. I spent another 2½ hours vomiting in the lobby before a bed became available. By then, I was so dehydrated that it was nearly midnight before a nurse could start an IV. Other times, I’ve had IVs put in my foot or my jugular.

In May 2011, my time in between hospital stays grew shorter. Finally, I started vomiting up fecal matter. (Why don’t people wash your mouth out with soap when you really need it?) A friend drove me to Moffitt, but there were no beds, and so we went across town to another hospital. In the ER, I got the usual tests, and the residents came back mournfully to tell me there wasn’t much that could be done —  they would just try to make me comfortable. I get this from people who haven’t read my chart, which must be the size of an encyclopedia now.

“My liver is full of benign cysts. I’m not dying!” I snapped the way I might tell a kid to pick up his toys.

Because there were no beds on the regular floor, I got transferred to an ICU. I’ve been trained to get up and walk as soon as I can. So, the next day, I took my IV tree and trudged out of the ICU. I met a friend and we chatted, until the staff found me. They would have called the code for a missing patient, but they knew the other ICU staff would laugh. (ICU patients don’t usually wander off.)

Playing with my NG tube.

Back in Moffitt, I had all sorts of tests, with barium down my throat and up my rectum. First, they tried to clean out my intestines, but had to compromise after seven enemas in two days. I wonder if waterboarding is worse.

My doctors decided to put a tube in my stomach (a gastric tube, or g-tube) to relieve pressure. First,  I was going to get an NG tube (nasal-gastric) while lying face up on a table. I tried to warn them. After they cleaned the vomit off their expensive equipment, they tried it again with anesthesia.

I was nauseated nonstop. The docs added Reglan to my mix of Zofran and phenergan. As a result, I would awaken in a lake of poop each morning, like the damned in Dante’s third circle of Hell. My nausea was so bad that I ended up getting fluids and nutrition only through IVs.

Imaging studies had failed to pinpoint the problem, and surgeons didn’t want to do exploratory surgery in hopes of correcting a problem caused by last year’s surgery. Finally, the cause was found and they performed a Lysis of Adhesions (sounds like an ancient Greek philosopher).

Could I return to normal pooping? A gastroenterologist sent me for a bunch of expensive tests that proved what I already knew: I lacked sufficient muscle one. Nevertheless, equipment and barium went up my rectum, with doctors exhorting me to bear down and me explaining that I was trying but couldn’t do any better.

Next I was sent to a physical therapist who specializes in incontinence. She massaged my belly and put me through exercises. I also went for doctor-approved colon hydrotherapy (a k a colonics) and cheered whenever I saw water carry away poop on the machine my therapist called BM TV.

Nevertheless, the obstructions came back. I was projectile-vomiting by the last night of the November 2012 CTOS in Prague. My former oncologist, Gina D’Amato, got me safely on the plane, and then I farted us across the Atlantic.

My gastroenterologist suggested I do a partial bowel prep, which sent me back to the ER where I cried and struggled as they forced down another NG tube. If NG tubes are torture for Guantanamo detainees, I wish people would put more effort into improving them for the rest of us.

I was discharged, only to end up back in Moffitt. To prevent bowel perforation, I  had an emergency surgery and wound up with a  transverse colostomy. The stoma was huge and gray, and an ostomy nurse took photos, presumably to show others what happens when a stoma goes bad. The surgeon needed to make the opening bigger, but couldn’t get time in the OR. With my permission, he did the procedure at bedside with local anesthesia, surrounded by residents and nurses. I want a lollipop for being a brave girl.

Two months later, in April 2013, I was vomiting again. I took morphine and phenergan and went back to sleep, hoping whatever I had would resolve. Whoops, it turned out that I was septic from a UTI that had gone untreated. After five days in the hospital, I had to give myself IV antibiotics at home. One day, the time for the drip coincided with an appointment at Moffitt, and so I threw the bag on my dashboard and headed over.

I remain happy with my ostomies. I don’t have to pull down my pants to use the bathroom, and my private parts serve only for decoration.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.