Margaret Livermore: 20-year ULMS Thriver

Story by Margaret Livermore, 4/26/22

 The Backstory 

My name is Margaret Livermore, and I am a 4 times uterine leiomyosarcoma survivor—ULMS—survivor, and thriver.

My introduction to cancer was traumatic and weird. I had surgery in December 2002—myomectomy—in Jamaica, where I was living. It was my first surgery, so I wasn’t aware I should have gotten a pathology report. Four months after the surgery, my gynecologist called and asked me to come in immediately for a meeting. My fear meter immediately went off the chart, and I remember telling my mom it could only be one of two things, AIDS or cancer, and I knew it wasn’t AIDS. On my way to work, I went to the doctor’s office. My doctor said the pathology report diagnosed leiomyosarcoma—LMS—a rare uterine cancer that affected only 4% of the world’s population. The proposed treatment was a complete hysterectomy followed by chemotherapy. My gynecologist feared over-diagnosis and suggested I get a second opinion. The second pathologist agreed there was abnormal cellular growth but disagreed with the aggressive treatment plan, so I got a third opinion from the cancer specialists at Memorial Sloan Kettering Cancer Center in NY. They agreed with the second doctor but suggested I do six months maintenance scans. I moved back to Florida, did one scan, my primary care doctor died, and I promptly forgot about the scans. Diagnosis: DENIAL.

Mystery Illness

 In 2007 I was diagnosed with fibroids again after suffering heavy bleeding and pain; I heard about endometrial ablation and opted for that. I was fine until 2016 when I started having many unrelated symptoms—mainly unexplainable aches and pain. My primary care physician (PCP) offered me depression meds thinking they were psychosomatic as they were sporadic and appeared and disappeared randomly. In 2017 microscopic blood was found in my urine. A scan found that tiny veins on my bladder were bursting. The urologist did a biopsy which came back clear. My blood count began to drop but they couldn’t find a bleed big enough to warrant it. The pain continued to appear and disappear. My doctor sent me to see multiple specialists, but their scans and tests came back clear. Then two of my sisters were diagnosed with rare cancers—Diffuse Large B-cell Lymphoma in February and Triple Negative Breast Cancer in June—I jumped into big sister mode to support them.

Trauma

 In 2018 I began to get very weak and rapidly lost weight. I continued to work, factoring in additional time to walk to my desk and skipping lunch because I was too exhausted to think about what to eat. I would spend my lunch hour sleeping in my car. After a while, I would work through lunch to go home early. When I got home, I would take a nap in my car before facing the short walkway and 12 steps to my apartment. My insurance didn’t require referrals for specialists, so I researched and found some fantastic specialists who ordered multiple tests that all came back clear. In April, I found a brilliant hematologist who was amazed that I was able to walk after getting my lab results. His patients with my SED rate—130—normal is between 0-29 for women— used wheelchairs. He also found I had the Alpha Thalassemia trait, which offered nothing. Again, no diagnosis as all other tests came back clear.

The anemia got severe, and iron tablets and juicing vegetables with high iron content didn’t help. My PCP sent me for iron infusions. After the first one, I felt energized for 3 days, then the exhaustion returned. The hematologist canceled the second iron infusion. He said my body was storing the ferritin, which could cause organ damage. Depression and anxiety set in.

More Trauma & A Diagnosis

In July 2018, my doctor suggested a biopsy for temporal arteritis during my ophthalmology check-up. He did a biopsy, cutting out pieces of the temporal artery on each side of my head. Again, the test results came back clear. 2 weeks later, I collapsed. I went to the hospital and had blood work, MRI, MRA, 3 CT scans—chest, abdomen, and pelvis—and a spinal tap done. The fibroids had doubled in size within a few months! Alarm bells went off in my head. A doctor advised me to contact my gynecologist immediately, saying the fibroids were degenerating and it might be cancer. I went to a gynecological oncologist. He did an ultrasound and said, “This doesn’t look like cancer to me.” I replied, “I don’t care. I want my uterus out!” Believe it or not, even hearing the C-word didn’t remind me that my pathology report 15 years earlier diagnosed LMS, so it was not mentioned to the surgeon. We agreed on laparoscopic surgery.

 During the hysterectomy, the surgeon realized that I had cancer. The pathology report I received the next day confirmed a diagnosis of ULMS, which triggered that memory from all those years ago. 

Three days after the surgery, my energy level went through the roof. I was so happy. When I went back for my follow-up, the doctor warned me that cancer cells may have escaped, and the margins on one side were not clear; he recommended chemotherapy. For the first time in 2 years, I felt terrific and balked at the thought of that level of exhaustion again so soon. I got a second and a third opinion, and the doctors I consulted agreed that I should do chemo. I talked to my family about it and decided to move forward with the prescribed four cycles of Gemzar and Taxotere. As I had feared, it beat me up. 

Chemotherapy

Chemo was harder on my body than I anticipated. I immediately started having neuropathy, hair loss, and hyper-pigmentation in my hands and feet. My entire body hurt. I fluctuated between constipation and diarrhea, my gums bled, and I was exhausted. My mom came to stay with me and had to wake me up to drink water and eat. The bone pain after the Neulasta—the drug to regenerate white blood cells in the bone marrow—was indescribable. A nurse suggested 1 Claritin and two Tylenol the day of the Neulasta infusion and two days after, which helped tremendously. My worst experience was my allergic reaction to the allergy pre-med—dexamethasone. I broke out in a terrible rash that attacked my torso, back, buttocks, and outer and inner thighs. The itch and heat emanating from the rashes almost drove me crazy.

I desperately reached out to the 4th Angel Cancer Mentoring Network for help as my family couldn’t relate to my trauma. I got a mentor who had LMS in her heart. They were unable to find one that matched my specific diagnosis. She’d also had the rash but not as severe. She was able to use ice to “cool” hers down. I saw an allergist, got a steroid shot, and was prescribed a cocktail of Zantac and Zyrtec twice per day. After the rash dried up, it resembled a severe burn. Eventually, my skin regained its normal look and texture. I continued taking the combo a few months after completing the chemo regimen as I could feel the itch coming back when I missed a dose. My mentor was a lifesaver. It was great talking to someone who was a long-term LMS survivor—15 years at the time—it made me feel like if she could survive, so could I.

Scans every three months for two years sounded okay. However, before each scan, I went into full panic mode—SCANXIETY IS REAL!!! Aside from a bit of brain fog, I started to feel okay again. After treatment, I applied to be a 4th Angel mentor. Six months later, I was allowed to do the training and certification. Since then, I have been mentoring cancer patients and their caregivers through the network and personal referrals.

Four months after I completed my treatment, I lost my dad, and seven months later, my sister to breast cancer, and I fell apart. 

Recurrences

In 2020, I had a recurrence in the exact same location. I had surgery again, and something disturbing happened. The surgeon could not place markers. When he snipped the “string-like” structures holding up the tumor, the “string” flipped like a rubber band, and the surgeon could not tell where it went. For this reason, the doctors wanted me to do radiation. No markers meant radiation to my entire pelvis. I was very concerned that this would cause bone and organ damage, plus I was told in 2018 that LMS was radiation resistant.

I was unsure how to proceed, so I looked for support online and found LMSDR on Facebook. The women in the group suggested that I see Dr. D’Amato, a sarcoma specialist in Miami. I had frank discussions with my surgeon, the radiologist, my hematology oncologist, and Dr. D’Amato. They all agreed that radiation was a great option, but I wasn’t convinced. I was offered chemo, but I refused that as well. I decided to continue my maintenance scans and see what happened. If the cancer recurred, we would have something physical to fight, and could measure its response to treatment. I didn’t have that previously.

After I made this decision, one of the doctors said I had made a good decision. She encouraged me to help other patients learn to advocate for themselves. I have been doing that on a social media platform called Clubhouse, where I have co-moderated discussion rooms for patients with chronic illnesses and one on one.

Unfortunately, the cancer came back a year later, in 2021. This time I opted to do chemo—dacarbazine and doxorubicin. Surgery was not an option because of the size and location of the tumor—near the intestines. After two cycles, my scans showed that the lesion had almost doubled in size. My doctor suggested two other options but leaned towards the Taxotere and Gemzar because it was two years after that regimen that I had the first recurrence. Initially, it didn’t seem to be working, but Dr. D’Amato and the tumor board decided to give it more time after the first scan to see what would happen; the tumor eventually shrunk by about a centimeter, and we were excited. We did another scan about six weeks ago, and it had shrunk by half. Dr. D’Amato said that we could now talk with the tumor board about surgery, and they agreed that I am now a possible surgical candidate! I decided to do two additional cycles, which I completed almost two weeks ago. In addition to the side effects mentioned in my 2018 experience, I am struggling with elevated heart rates. I take medication for it. I also have shortness of breath, nightmares from the anti-anxiety drugs, and anger issues that have affected my personal life and my relationship with my care team.

Next Steps

I met with a surgeon on the sarcoma team. Based on the tumor's location, he may have to resection the rectum, bladder, and urethra. That scared the heck out of me. I’m a proponent of surgery because I believe that if you get the tumor out of your body, you have a fighting chance, but this feels like a whole lot.  

Advice to the newly diagnosed based on my experiences

The first and most important thing is to advocate for yourself. If you don’t feel able to do this, try to find someone you trust who can do it for you.

Next, and the hardest one for me, is to ask for help. I have both given and received mentoring, and the first thing my mentor told me was that when you are dealing with cancer, you are allowed to be selfish. If people are irritating you, you can tell them. If you don’t want visitors, don’t feel bad—just let people know that you are not up for it that day. It is okay to put yourself first!

Do not be afraid to get therapy and medication to help with anxiety. Ordinarily, I don't particularly appreciate taking drugs, but I have found anti-anxiety medications very helpful. I think everyone going through treatment for LMS should have a therapist and social worker!

If you are expecting hair loss, I recommend you be proactive and shave your head. I’ve found making this choice empowering as you decide when your hair goes versus the shock of clumps coming out in your hand.

For people like me who have darker skin, hyperpigmentation can be an issue during treatment. This can be very traumatic as you’re advised not to use nail polish because of concerns about chemical interaction with the chemo drugs. My hands, feet, and nails get very dark, but they return to normal after the treatment ends. Mine took almost a year last time.  

One more piece of advice: stay away from negative people! They can kill your spirit. It is not always easy to be positive, but I always see something to be thankful for if I try. Interacting with nature, when possible, always lifts my spirits. Watching the sunrise and sunset work wonders for me. I also participate in art therapy and photography.

If you are interested in getting a mentor or being one, you might consider the 4th Angel mentoring program. Being a mentor has been very meaningful for me. One mentoring experience I will never forget is when a friend of mine in Jamaica called and asked me to help her brother who was diagnosed with prostate cancer. I called him, and he was very discouraged and decided to give up. His insurance wouldn’t cover treatment, and he did not want to put his family in debt. I said, “No, we don’t give in to cancer without fighting!”  I started calling foundations and hospitals to find programs that offered financial help for him. We were able to get his surgery paid for by a grant, and he is now cancer-free and thriving. Best of all, his family still has him. It is a great feeling to be able to put what you have learned from your own experience to use and help someone else.