Lisa’s Cancer Survivor Story:
Lisa Franklin has always been meticulous about tending to her health. She never missed a wellness visit. She saw her primary care physician and her gynecologist regularly. And when she started to experience some puzzling symptoms she went for a checkup immediately.
The problem was that her symptoms could have been anything. Gastro-intestinal discomfort, burning and gurgling in her stomach, a feeling something was stuck in her throat, painful intercourse and increased discharge. Was it an ulcer? Was it a parasite she had picked up in Brazil? All the tests were negative. She took Maalox. She became a vegetarian.
In 2013 she ended up in an emergency room in Dallas, Texas, where she was diagnosed with advanced stage ovarian cancer in both ovaries, which had spread to lymph nodes, liver and spleen. The largest tumor was on her colon. How could six doctors have missed it?
Since her cancer diagnosis her journey has become a mission—to raise awareness of ovarian cancer in under-served communities. "I have heard women of color saying black women don't get ovarian cancer. Well, I am here to tell them that they do."
There's a long history of cancer in Lisa's family. Because of it she went for a mammography five years ahead of time. "I considered myself proactive but I was just blown away that I didn't have the language to even ask about ovarian cancer testing."
"It never occurred to my doctors—and they were women," she says. "Doctors are the first line of defense and they need to be educated around ovarian cancer." Lisa believes that because this cancer is so silent, it's a very gray area in terms of the diagnosis. She wants to teach women how to bring up the conversation. "Now when I go for tests and blood work, women often ask me, 'tell me how you knew you had ovarian cancer.' They are hungry for information," she says.
"I tell them to ask the doctor to rule it out. If you have those pervasive, vague symptoms that any woman can have—because of menses, bloating, change of bowel habits, frequent urination, feeling full quickly, pain in intercourse—for more than three weeks, and you get no relief from over the counter drugs, you need to go and tell your doctor you need to rule this out. "
This is how Lisa found herself in a hospital in a strange city where she had moved from New York City two years before. She had wanted a change and she thought her money would go further there. She liked the idea that there was an emerging arts scene. A former program coordinator for a College Access program at CUNY, she took educational consulting jobs while she looked for a new position. "My plan was to figure out what I wanted to do," she says. But without steady employment, she didn't have any health insurance.
In that Dallas emergency room Lisa quickly learned that without health insurance in Texas, "no doctor would see me, even when I offered to pay out of pocket."
She returned to New York where New York Presbyterian Hospital agreed to begin treatment even though she had no insurance. (She has since applied for Medicaid.) Lisa began with three months of chemotherapy followed by de-bulking surgery. She then resumed chemo until January 2014. She went into remission in February but by September her symptoms returned.
The doctors offered more chemo. "They were very candid with me. They explained that what usually happens to a woman with advanced stage ovarian cancer is that the first time they aim to cure you. That is the hope."
But with such a brief remission, the doctors told her that her cancer was going to be chronic. The new chemo would act as a form of symptom control. But Lisa decided that since quality of life meant more to her, she would not go back into treatment. Her doctors had a hard time with her decision, but they respected it. Her family, however, was thrown for a loop. "They have had a difficult time accepting my decision." It helped a lot when her family met with her medical team and they came away with more understanding of why she had made this decision.
As a woman, Lisa has been on a quest for women's wellness and wholeness, "what I have been given to do on this earth." The irony of her situation is not lost on her. "How do I get a gynecological cancer when I have been teaching women how to honor one of their most sacred regions? Certain things can't be explained. I just have to accept," she says.
Lisa continues to reach out to other women. Soon after her cancer went into remission, Lisa became a SHARE Ambassador, educating women in under-served African-American communities about ovarian cancer symptoms and sharing her story. She continues to visit community-based organizations and churches to ensure that women have the information she didn't have.
In 2004, Lisa discovered waist beads. "They are from the African diaspora," she explains. "The beads were a way of adorning and affirming your femininity. In Ghana, baby girls are given the beads for protection because there is a myth that it's the beads that give a woman her shape. In Senegal the beads are a sign of sensuality." Lisa organizes waist beading circles where she teaches the history and women make their own beads to help them reclaim their sacredness and life giving, and healing.
But her overarching purpose is as a parent, a mother. Lisa has one son and one grandson. "No other role is as important as forming your child to be a decent human being," she says. Her son does not say much about her illness but he knows she is brave. But she is clear about what she hopes he will take away from her experience. "Even in the face of adversity, we can either shrink and let adversity take us over or we can allow that adversity to let us rise and shine, and use it to propel ourselves to our highest good."
More stories here.
Lynn’s Cancer Survivor Story:
There is a lot of cancer in my family. My dad and uncle both had it twice. My first cousin is having a second bout of throat cancer. Three cousins had breast cancer, and my aunt had uterine cancer. So because of my family history, I was watching for something.
In the summer of 1997, I had the worst pain of my life, in my stomach. I thought it was appendicitis. I was on my way to the emergency room when it passed, so I didn’t go. At the end of that summer, I moved from Fort Lauderdale, FL, to northern Florida for a new teaching job. I felt nauseous, but I thought it was just the stress of changing jobs. Then my periods went from being just one day to three. I had always been regular, like clockwork.
I remember I was going on a date and had been feeling crampy all day. I was supposed to see the doctor the following week; I was just waiting for my new insurance to kick in. On my date, I started bleeding – really bleeding. My date worked in emergency response, so he was very calm and took me home. When the bleeding wouldn’t stop...
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Brenda’s Cancer Survivor Story:
I am a “seasoned” citizen (I don’t like to use the word senior!) and retired educator. I’ve never given birth, but I have plenty of children! I’ve worked with children of all ages, from elementary through college, and have been involved in a broad range of positions, including serving as a teacher, guidance counselor, and assistant principal.
I had fibroids for years, but it was abnormal heavy bleeding that led me to see my doctor. I had already gone through menopause, but would occasionally have very, very heavy bleeding. One of these bleeding episodes is what led me to make an appointment with my doctor. I learned that I had cancer in the fall of 2003, while I was at school. I was walking down the hallway, and talking with my doctor on the phone. By the time I got to my desk, he had told me I had uterine cancer....
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Janet’s Cancer Survivor Story:
In the spring of 2013, when I was 54 and thought I was pretty much through menopause, I started having unusual sporadic bleeding in the form of mini periods that happened every few weeks for about three months. I thought it was just another part of menopause and when it stopped, I forgot about it. I was in good health and didn’t have any pain, so I didn’t think there was anything to worry about.
At the end of that year, I saw my gynecologist for my regular Pap test and, almost as an afterthought, mentioned the bleeding. She looked at me with concern and said, “Bleeding is unusual for someone at your age. Let’s find out what’s going on.” She immediately ordered an ultrasound. As soon I got home from the test, my husband told me the doctor had already called. I called her back and that’s when I found out there was a five-centimeter mass on my right ovary......
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Teresa’s Cancer Survivor Story:
I had no symptoms, or didn’t realize it was a symptom until after the fact, and only went to the doctor because I was annoyed. I had what I thought was an infected ingrown hair bump on my vulva. I get them often, but this stubborn bump was different. It wasn’t red or inflamed, and it didn’t hurt. I couldn’t actually see the ingrown hair, but what else could it have been? It was big and hard and round, much like a wart. I thought that it had to be an infected hair bump. I really thought nothing of it and only called my doctor to have it removed after a month of trying to figure out how to “pop” it.
It was almost six weeks before I was able to get in to see my gynecologist for a non-emergency visit. He said, “hmm... well, this is an interesting looking bump. Why don’t we send it for a biopsy, just to see if the infection needs treatment?”
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Tiffany’s Cancer Survivor Story:
In March 2013, I started having some bloating and unexplained weight gain. I went to a couple of doctors. I had an X-ray and EGD (Editor’s note: an EGD, also called an upper endoscopy, is a test to examine the lining of the esophagus, stomach, and first part of the small intestine.) All tests and blood work didn’t find anything.
The next month, I went on vacation with my best friend for my birthday. After having an amazing root beer float after our day on the beach, we took a nap. I begin to vomit while I was asleep. I knew then something was really wrong. I went back to the gastroenterologist who had done the EGD. He said I had a disorder that didn’t allow food to properly digest in my body; however, I needed to order my own ultrasound...
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Sharolyn’s Cancer Survivor Story:
I had gained about five pounds and began walking several miles a day and exercising at the gym to try losing the weight, all to no avail. I attributed the occasional ache in my abdomen to the exercise routine. On the very last day of my teaching contract for the academic year, I developed a fever and chills. I drank lots of fluids, took two aspirins and went to bed early. I awoke the next morning with a slightly lower temperature and abdominal pain. Thinking I had appendicitis, I immediately contacted my family physician, who saw me that afternoon. He diagnosed the problem as an intestinal virus, recommended fluids and medication for the fever, and said I should be fine to leave for the vacation my husband and I had scheduled. I felt better as the week progressed and left for our vacation as planned.
During the vacation, I had occasional bouts of nausea and began having night sweats. Upon returning home, I called the doctor immediately. He did blood work and ordered an abdominal scan to evaluate my gallbladder for gallstones. The results of that scan altered my life forever. There was a very large mass that appeared to be coming from my left ovary...
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Linda’s Cancer Survivor Story:
I’ll never forget that day when my doctor came in to tell me that I had cancer. But she said, “We can beat this.” Similarly, I’ll never forget what my husband said when I was diagnosed, “Come on, you’re going to be alright, we’ve fought bigger devils than this.” Although I didn’t think that we had, I did not cancel out his faith-filled words. These words and so many other faith-filled words of family and friends would be the hope that I needed in the weeks to come.
At the end of March, I began four three-week cycles of chemotherapy. This was a frightening time. I can remember many days and nights confessing that God had not given me the spirit of fear, but of love, power, and a sound mind. I am a high-energy person and it was difficult not to have energy to do the things that I was accustomed to doing. I’ll never forget the words of a close friend, “You’ll need to let others take care of you.” This offered me hope that there would be others to help me, just as I had given my help and support to others before. During treatment, I experienced such a flood of family and friends supporting me, especially in prayer...
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Jennie’s Cancer Survivor Story:
I was diagnosed with cervical cancer in 1964—when I was 32. I did not have any symptoms. I went in for my annual gynecological exam and got a Pap test. My results came back as irregular so the doctor recommended more testing. The results showed that I had cervical cancer.
My primary care doctor referred me to a specialist right away to talk about my treatment options. I couldn’t tolerate radiation, so the specialist opted for surgically removing my cervix. I was lucky in that I had a good health care team...
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I am 45 years old, diagnosed with ovarian cancer in May, 2014. I underwent surgery in July and am currently having chemotherapy treatment. I have a wonderful support system of family and friends, especially my two boys, ages 29 and 9 who both mean the world to me. It’s been a tough road so far but I never would have made it through without a very special person in my life. I call him my “Co-Survivor”, the one who has been by my side from the very beginning of it all. His name is Sam, my sweet little 9-year-old boy. Let me introduce you to him by sharing just why I nominate him for this award.
For that long six weeks of recovery, Sam took the absolute best care of me. Every day he woke me with a kiss and hug and asked me how I slept and how I was feeling. He sat with me throughout the day. He told me jokes, even gave me his favorite blanket. He took over, cleaning up around the house, making sure I was drinking and eating, even helped out with the laundry. We read to each other, watching movies, making each other laugh and eating popsicles. He took on the role of caring for me. Sam sacrificed his summer months, to make me feel the best I could. It was his quest, he says.
My mother’s sister, Linda, has arrived from Australia for her annual visit. We’ve got a trip to Roatan booked in a few weeks, but no one believes we’ll actually be going. Sad, because if ever I needed a vacation, now was the time. Linda is great to have around. She worked in the social work/medical field for 30 years so has experience with hospitals and meetings with medical staff. She’s let me know that there are different roles for each of us to play at the hospital meeting in the morning. I’m the patient, so my role is to hand over my health card, nod when asked a question and blink at regular intervals. My mom will be the crier, my dad will go silent, and she will take notes and ask the questions we wrote down before the meeting.
As we drive to the hospital in the morning, the car is uncomfortably silent. I turn down the radio and ask, “So, we all know they’re going to say I have cancer, right?” My family answers: “Yep”, the music goes back up, and we continue on to the hospital.
Once again, the waiting room clears out before my name is called. I tried to tell my mom that I wanted to find out on my own, and then call them in. She’s having none of it. So we all file into the room, and sit around the table. There aren’t enough chairs for us and the whole medical team, so my surgeon puts his clipboard down and goes to get more. I sneak a look at the top page. ”Immediate Chemo” is what I read. In a strange way, I did find out by myself, even in a room full of people.
True to form, we have all assumed our roles as we listen to the doctors. My father leans back, arms folded and eyes closed. My mom looks on the verge of tears, my aunt is taking notes and asking all the right questions. I have dug in my purse, and found mini boxes of raisins. By the end of the appointment I’ve eaten 7 boxes of raisins, and tasted none of them.
I meet my oncologist at this appointment. She’s lovely -- 5 foot nothing, you can see the determination in her. She’s also not much older than I am. We discuss the treatment plan, which will start with chemotherapy. She explains that this is not the traditional order of treatment, but the tumour is 5cm so she wants to shrink it as much as possible before we move on to surgery. I’m on board. I honestly have no idea about chemo, the drugs, and their side effects. She wants me to start the next day. I go and visit the chemo area, see the loungers, the IV stands, and it becomes very real. Questions start to run through my brain. Which chair will I sit in? Will people talk as we sit together for hours on end? Are there really only two washrooms for this many people? Very important things.
We discuss the side effects of chemotherapy, and that I may go into menopause. The idea of freezing my eggs comes up, something I never thought about. I decide that I should look into the possibility of harvesting some eggs, and my oncologist gives me two weeks to do it and get started with chemo.
The Tests Begin
It’s January 9, 2013. Today’s the day I go to the Breast Health Center, meet the doctors there and have the mysterious day of tests. My father is instantly uncomfortable -- put the word ‘breast’ together with the word ‘daughter’ and see how any man deals with it. He’s trying to lighten the mood in the waiting room by making jokes….again, another family trait! My mother is playing it cool, just watching what’s going on. We meet with the surgeon and he explains the tests I’ll be doing. An ultrasound-guided biopsy is first.
The test starts out as any ultrasound does, with a whole lot of goop and not many clothes. I like this technician better than Joanne, from a few posts ago. She laughs when I try my “It’s a boy!” joke again, and we bond instantly. She tells me about her dog and makes me contort my body in strange ways to get the angle just right. Another white coat comes in and freezes (Read: shoves a big needle in my breast) the area for the biopsy. I close my eyes as I see the biopsy tool come close. There’s pressure, and a sound like a toy gun. He does this a few times and then lets the technician clean me up and bandage the incision spot.
I’d like to say that the tests are one after the other, but they’re actually hours apart. Anyone who’s been in a similar experience will relate. I spent a good portion of this day dressed normally from the waist down and wearing only a hospital gown on the top. I’m still conscious of my jiggly boobs at this point, so I put my down vest over the gown as cover. This day began our study in the art of waiting rooms…I should have my Masters by now!
The mammogram is up next. I’m 33 so have obviously never had one. Interesting experience. In retrospect, being numb from the biopsy was a blessing. “Put your arm here, shoulder back, head angled like so and make sure your hair is out of the way,” says the technician. “Is this tight enough?” Crank. “Now hold your breath.” Then repeat for the other side. No two ways about it, a mammogram -- essentially, putting your breast in a vice -- hurts. I return to my parents and commiserate with my mom about the “boob squish” as we call it. Dad is instantly fascinated with the waiting room wallpaper.
We meet again with the surgeon, he does a physical exam and lets us know that we can expect the results in 10 days. Another 10 days to think, to get stuck in our heads and worry….sigh.
It took about three hours for the freezing to wear off, then oh mama did it ache. I went to work the next morning cursing all bra manufacturers, and keeping a protective arm over my chest in a karate chop motion. I must have looked very strange on the subway, but a girl’s gotta do what a girl’s gotta do!
LindaIn December 2010, when Linda was 54 years old, she began experiencing symptoms that she tried to ignore—bloating, diarrhea, vomiting. Linda figured it was a virus that she’d get over. But one morning that next February she became extremely sick. Linda felt a horrible pain in her stomach that would not go away. That night she went to the emergency room. The next thing she knew she was being transferred to a regional cancer center. But no one told her that she had cancer. She was shocked.
Linda says "At the cancer center, the doctors wanted to perform emergency surgery, but I developed an infection. I was in the hospital for several days while the infection was treated, and then underwent a complete hysterectomy, and removal of my appendix. I learned that there was one large mass and one small mass in my stomach, along with over a gallon of water. The doctor scraped cells from my lymph nodes to check for cancer. I remained in the hospital for three or four days after surgery." Read more here...