It’s Not Cancer, It’s Fibroids


its not cancer its fibroids

its not cancer its fibroids

I am a woman who had a bad case of fibroids. In my case, genetics probably played a part, since my mother had them, too.

You hear a lot about breast and uterine cancer, but almost never does anyone talk about fibroids, although if you still listen to the radio, you might hear ads for medical trials. Uterine fibroids are non-cancerous tumors that grow within the wall of the uterus. Known technically as leiomyomata, they can vary in size and number and may cause infertility, miscarriage, and early onset of labor.

Most American women will develop fibroids at some point in their lives. One study found that, by age 50, 70 percent of whites and 80 percent of African-Americans had fibroids. In many instances, fibroids don’t cause symptoms, and in such cases women may be unaware they have them.

Various therapies (including drugs or surgical removal of individual fibroids) are used to treat symptoms. However, when the condition is painful or the number of fibroids is great, doctors may advise surgery to remove the uterus—a hysterectomy. More than 200,000 hysterectomies for uterine fibroids are performed each year. Annual direct health-care costs for uterine fibroids exceed $2.1 billion, according to the National Institutes of Health.
(https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=50)

Emerging Awareness

I first became aware that I had a problem with fibroids in the mid-2000s when I went for a Pap smear at the Helen B. Bentley Health Center in Miami, FL. A gynecologist I saw there thought I should have an ultrasound study to get a better look at my ovaries and uterus. Unfortunately the two men who performed the ultrasound looked only at my uterus.

When I went in for my results, I saw a different gynecologist at the clinic. This man should never have been working as a gynecologist. He told me I would never get married and have kids, and that taking birth control would make the fibroids worse. He could do nothing for me. I didn’t have another Pap smear for several years.

Other women should never let a gynecologist send them away without really talking to them about their fibroids. If this happens, they should get a second opinion from a different doctor right away.

I was never a heavy child. I missed all the fat stages that kids normally go through. I was very active in physical education and participated in gymnastics through most of elementary school. Even turning 30 years old was not that bad. In my late 20s I started working out at a gym and doing yoga.

A few years later my body started to change. I began gaining weight as I had not done in the past. Taking bread, rice, and pasta out of my diet didn’t make much difference. A gym friend suggested that I switch from elliptical machines to the treadmill. This slightly reduced my waistline, but not my weight.

I was also prone to yeast infections. At one point, my period was just about to begin, and an over-the-counter cream was not going to work. I didn’t want to wait another week, and I needed a prescription medication to help clear up yeast infections.

I had no health insurance, even with Obamacare, which I haven’t been able to get because the State of Florida hasn’t expanded Medicaid and Medicare. I’m an independent filmmaker with a variable income, and in most months—paradoxically—I make too little money to qualify.

At this point the Helen B. Bentley Health Center was closed. The new local clinic was Community Health of South Florida, Inc. (CHI). I made an appointment in May of 2016. When I went in, I saw a nice midwife from England.

The Diagnosis

I told the midwife that I thought I had a yeast infection, which was correct. I also scared her during my Pap smear. I was swollen because of the infection, and my uterus was stretched because my fibroids had grown so much that she was not able to do a proper Pap smear. She sent me across town to see a gynecologist at another CHI location to get both an ultrasound and a Pap smear.

Both were done in June of 2016. First a nice male technician performed the ultrasound. He did a complete study, looking not just at my ovaries and uterus, but also my kidneys, to make sure the fibroids had not spread. I had three fibroids, and one of them was really large. A few days later I came back for the Pap smear. The gynecologist asked about my period, which seems to be a common question with respect to fibroids. Sometimes women bleed outside their regular period. I didn’t have this problem, but I did bleed heavily for a few days during my period. This would be an issue when I started to look for medical trials to join.

I went back to my local CHI clinic for the results. The nice midwife from England told me my Pap smear was clean—no cancer—but I had to get a Jackson Memorial Hospital card to deal with my ever-growing fibroids

Looking For Solutions

I tried to get the card at a Jackson location in South Miami, but because of my income and insurance issues, I was sent away.

I’m not the type to give up easily. I asked another gym friend, a doctor, how to find medical trials. She helped me compile this list:

National Institutes of Health

ClinicalTrials.gov

Research Match

HysterSisters

South Miami Hospital

I heard radio ads for a medical trial for fibroids, and called for more information. The trial was a two-year study for a pill, and it was a double-blind study, which means I could have been given a placebo instead of the medication. In any case, I didn’t have two years to wait. I was too large already, and needed these fibroids out of my body as soon as possible.

I also checked with local health food stores about pills that might help, but the pills would cost too much because my fibroids were already too large.

Being a filmmaker, I looked into making a reality show about fibroids, and tried to contact a few of the daytime medical shows. I never heard back from any of the medical shows. One or two reality shows acknowledged my inquiries via email, but no formal follow-up occurred.

I looked into the Fibroid Center at South Miami Hospital, but without insurance, just walking in the front door would have cost me a lot out of pocket upfront without knowing exactly what those costs would be.

I even looked into applying for grants to help pay for the surgery. Most of the grants I found were for people with minor children, published authors, actors, and people working behind the scenes in theater. None of these worked for me. I’ve written a children’s book, Mr. Grumbles, but it wasn’t scheduled for publication until 2018.

I called a local Planned Parenthood office for advice. The people there suggested what I was already doing.

In August of 2016, I found a surgical medical trial (Sonata Study) in Fort Lauderdale, FL, about 30 miles north of Miami. I made a few trips there to see if I could get into the trial. This would be my second Pap smear and ultrasound. They also tried to do a transvaginal ultrasound, but I was too large. They did an endometrial biopsy, too. I did not get into this medical trial because my fibroids were so large.

Access At Last

I had to wait until November of 2016 to try again for a Jackson card. Finally I had a freelance job with enough income in a 30-day period to reapply, and this time I got the card. Then I had to see a general doctor to remand me to the gynecological clinic at Jackson Hospital.

The social worker to whom I was assigned in the Jackson system gave me this list of web sites:

UM Health

Clinical Connection

Clinical Trials GPS

Center Watch

I first visited Jackson’s gynecological clinic in January of 2017. I came prepared with the results from my past exams. I felt really bad for the intern who did my intake. I know he wants to be a doctor, but I’m sure that hearing about female issues was not his specialty, and not his idea of fun. I told him about everything from the start and handed over sheets of results. He asked me a few questions, and then went to get a resident and the head doctor of the Jackson gynecological clinic.

Since I had two recent Pap smears already, they didn’t need a third one, but they wanted to perform another ultrasound study and also test all my body’s fluids.

During my next few visits to the Jackson gynecological clinic, the doctors discussed my options for surgery. One was to take everything out except my ovaries (a partial hysterectomy) so I wouldn’t go into early menopause. The other was to try to save my uterus (a myomectomy). This surgery takes longer and the fibroids could come back. I might still be able to have a child, but since I was already in my 40s, the child’s health might be at risk.

You might think that I would go home, do research, and look at photos of fibroids online—but I didn’t. I just thought really hard about my options. Since I don’t date much, my chances of meeting someone and getting married anytime soon were slim. I always wanted to have one child and adopt one, too, and I could still adopt a child later.

Right now I just wanted these fibroids out of my body. Even though I was eating right, and doing yoga two to five days a week and cardio with weights three days week, I had gone from a size 10 or 12 to a size 14, and I couldn’t do some yoga poses because of the size of my stomach and uterus. I looked like I was six months pregnant. My self-image was shot, and I was having hot flashes.

In the months before my surgery, I spoke with a few women friends. Three of them had the same problem. I would never have known if I had not been talking about my own difficulty. We women need to talk with each other about our medical issues more often.

After the tests, exams, and follow-up appointments, I was told that sometime in the spring or summer I would receive a phone call about the date of my operation. This call came in May of 2017.

I had my game plan all set. I wanted to do my regular workout and yoga, and eat lots of green vegetables, lamb, salmon, and so forth to give me “good blood” for the surgery. I wanted to donate blood to myself, which had to happen at least 13 days before surgery.

Then Jackson called back to move the surgery up a few days, so I only had 10 days before my surgery.

D-day was Tuesday, May 16th, 2017. The pre-operative preparations on the 15th included paperwork, more blood and fluid being drawn, and receiving instructions for the rest of that day.

I think my parents were more worried about me going in for the surgery than I was. I had almost a year to deal with getting the fibroids out of my body, and I was ready for it to happen.

Complications

You would think this is the end of the story, but the surgery itself and its aftermath created some complications. Instead of three fibroids in my uterus, the surgeon found six or seven, so I was in the medical stirrups longer than planned.

Also in post-op, I found out that I really, really wanted water, but at first I couldn’t talk because I had a breathing tube down my throat during the surgery. The post-op staff didn’t know American Sign Language, which I learned in college to meet a foreign-language requirement. If you have that skill, let your caregivers know in advance.

The post-op staff would only give me ice, which turned out be a good thing because I’m allergic to anesthetic, which I didn’t know. For the first few hours after the surgery, nothing stayed down.

When I could finally eat. I had brought my own care package with me. I wanted make sure I had the right type of juice and broth, without food additives.

The doctors had put a Sequential Compression Device (SCD) on my leg to prevent blood clots. My right leg was out straight, but my left leg was bent. After my urinary catheter was removed, I tried to use the bathroom. If a nurse assistant had not been helping me, I would have hit the floor. My right leg was fine, but my left leg did not work at all.

The nurse assistant used an ArjoHuntleigh Sara Stedy Manual Standing Aid to help me go to the restroom.

Then a doctor visited and ran his pen down my left foot. Later a room-full of doctors came in. They said I was a six out of ten on their Clinical Grade (Functional Assessments) Scale, which was not good. Then someone from the physical therapy department brought me a walker and brace for my left leg, and taught me how use them. The walker was very helpful. I tried the brace once at home, but it wasn’t useful.

The case worker who came to visit after my surgery said arranging outpatient physical therapy for me would take three weeks. For a gym rat like me, going from being very active to being stuck in bed unable to walk didn’t sound good. Instead, she arranged for home physical therapy, which took place three days week for the next three months.

On my way out of the hospital on Thursday, I was given some medical underwear from The Medical Supply Group, since I wasn’t able to wear normal underwear home. This underwear was a big help, especially after my incision opened the following Monday, sending me to the emergency room. Afterwards the medical underwear held the bandages and tape in place while everything healed.

While I was convalescing, a friend of my father’s told him about a twice-a-week chair yoga class at Dharma Studio (http://www.dharmastudio.com/) in Miami’s Coconut Grove neighborhood, sponsored by The Woody Foundation in Coral Gables, FL. These classes and home physical therapy helped me begin to walk again, first with the walker, and then with a cane. I did this all a lot sooner than my physical therapist thought I would.

During this time I learned that the world is not flat. I gained appreciation for people who live their lives in a wheelchair or have a walking issue. My left knee might be never be 100 percent, but eventually I was able to get back in the gym to work out and do regular yoga five days week, and carry equipment around on filming locations.

Marjory E. Leposky, a filmmaker and children's chapter book author with more than 10 years of production experience on a broad spectrum of projects that include TV commercials, music videos for local artists, and feature film productions.

She has served as the following: casting director, casting associate, producer, production coordinator, scriptwriter, unit production manager and production assistant for films, TV commercials, corporate videos, and music videos in South Florida and Los Angeles.

Marjory earned degrees in television and media production from Miami Dade College formally Miami-Dade Community College and Florida State University.
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