Around Christmas of 2013, I developed a cough. I waited for the accompanying cold, but nothing more developed. After about a month, I saw my primary care physician, who put me on prescription cough medicine. When that treatment didn’t work, she treated me for possible GERD/acid reflux, and later referred me to an allergist who determined I had an allergy to maple tree sap, and gave me medicine for that. Not only was nothing working, my cough was getting worse. I worked as a college librarian, and students were complaining about it as it was interfering with their studying.
Meanwhile, my appetite started diminishing. I ate less and less, and eventually, I ate maybe two or three bites of food and I was done for the day. I lost 40 pounds in less than four months. All along I was still seeing my primary care physician for my worsening cough, but she never examined me for any possible reasons for the cough; she just kept trying different remedies.
To add to my health problems, I was becoming short of breath for the least amount of exertion, and even walking short distances was too taxing on me. Thank heavens my job was fairly sedentary, so I had little trouble doing my work. All-in-all, my body was telling me something that I didn’t understand.
On June 18, 2014, my son accompanied me to a doctor’s appointment. I had been referred to an endoscopist to see if there was a physical reason I couldn’t eat, but nothing had shown up there, either. But after the appointment, my son told me he was taking me to the ER because he and my daughter knew things just weren’t right with me. Normally I would have argued with him, but he’s a paramedic, and there was just something in his tone of voice that said I’d better listen to him.
After exams and other tests in the ER, I received the news I NEVER expected to hear, and it was a double whammy to boot: my shortness of breath was caused by a large saddle clot near my heart, and that in turn was caused by a tumor that had grown so large it was pressing on internal organs, causing the clot.
The tumor was also pressing on my diaphragm, which was the reason I was coughing. The ER doctor said it could possibly be cancer. Thinking about my cough, I said I don’t smoke, but he said it looked like the tumor was on an ovary, possibly indicating a gynecological cancer. The rest of the afternoon is gone from my memory. I wasn’t asleep or sedated; I just don’t remember anything until I was settled into my room in ICU and getting treated for my blood clot. I stayed in the ICU for a couple of days until a nurse told me they were moving me to the cancer floor. Cancer floor? Wait—I didn’t have cancer; the doctor said it was only a possibility! But they moved me anyway, until I was released a few days later, with an appointment to meet with a gynecologic oncologist.
After my release, I met with my gyn-onc to discuss the planned debulking surgery. He told me that I definitely had a tumor on my ovary, but even though my CA-125 was 1675 and I had no appetite, there were no other indications of cancer, and I felt better. I was scheduled for surgery on July 18, 2014, exactly a month after my ER visit. They had to wait a month to get my saddle clot taken care of. For the next month, I continued my blood thinner regimen.
My surgery went well. My gyn-onc also had a cardiologist and a hematologist on standby during surgery because of the potential blood clot problems. It was a surprise, then, when the biopsy showed my tumor was definitely cancer and was diagnosed as stage IIIa, grade 3, clear cell.
I was released from the hospital after a couple of days and moved in with my daughter to recuperate. I was still on blood thinners as well as post-surgery medication. One night, about a week later, I woke up around 3 am, feeling some dampness. At first I thought it was sleep sweat, but it felt like more than that. I turned on the light and found that the bed—and I—were soaked in blood. I have to admit I was so frightened that for a few seconds I really didn’t know what to do!
I called for my daughter, and she brought me back to the ER (same hospital each time I was there), and they brought me right in and immediately gave me three units of blood and one of plasma and called my doctor. When he got there and looked at me, he figured out right away what had happened—that the stitches on the underlying fascia layer of skin had come open, and it would be about a 15-minute repair job. Unfortunately, his and the hospital’s schedules wouldn’t coincide for a couple of days, so I was again a hospital resident until that could happen. (Meanwhile, I was continuously soaking through bandages, gowns, and bedding until I could get the incision repaired.) I’m sure being on the blood thinners didn’t help slow down the bleeding any! I finally went home again after a week, ready for the next step.
It wasn’t until September 2, 2014, that I had my port put in and I started my treatment on September 5. I was put on carbo-taxol, on a schedule of three weeks on and one week off. I would go in for my appointment, they would draw my blood to check my ANC (white blood cell) counts, and then proceed if my counts were good. But my body did not comply with that schedule, and more often than not I was turned away from receiving my chemo treatment.
One day, after being told my count was too low, I broke down into a nurse’s arms and just sobbed. I told her I was going to just quit coming since it was a waste of time. She was so comforting, and let me cry into her arms. She then had me wait for a while, while she got hold of my doctor. Shortly afterward, she came back and reported that my doctor said, “we’re going to have to put a stop to that nonsense”, and my schedule was changed. (To this day I’m not sure what “nonsense” he was referring to—the ANC counts, or my decision to quit chemo!) He started me on a 5-hour dose of chemo, followed by a shot of Neulasta, then three weeks off. Finally, a schedule that my body could cope with, and I was able to actually complete my chemo treatments.
I finished the carbo-taxol on February 3, 2015. It was emotional for me—there was a combination of elation and fear; I had considered chemo as my “safety net”, and now I was on my own. Subsequent exams have been good, though. My CA-125 has stayed between 4 and 9, and pelvic exams have proven clear as well. But I still have the fear of recurrence. I imagine that’s something every cancer veteran experiences. I have a whole new appreciation for birthdays now; I could have had no more at all!
I owe my life to both of my kids along with the medical communities that treated me. I owe my recovered health to my faith in God also. I do find myself still experiencing the emotions I had during my treatment—at times anger, fear, uncertainty, despair, and hopelessness, although not to the degree I used to feel them. But also mixed in with those are huge amounts of optimism, hope, and joy. The two support groups I belong to—one at MOCA–have given me strength when I’ve felt it waning, and camaraderie when I’ve felt alone. MOCA has also given me resources I had no idea existed. I rely on MOCA for information and support regularly.
I was also lucky enough to have a wonderful network of family and friends, people who would rejoice with me when I had good news, and people who let me cry when I was going through bad times. No one told me to “cheer up”, or “the worst is over”, or any other useless cliches. I’m sure they were going through the same emotions I was but from a different point of view. I will always be grateful to them in ways I can’t express.
Thankfully, I was able to keep my sense of humor even when others may have thought it misplaced. At the time of my surgery, I was 63 years old, and my kids were 40 and 36. As I was being wheeled into the operating room and saying my good-byes and I love yous to my kids, I asked them, “are you guys okay without having any more siblings?” That lightened the mood for everyone, and it was what I needed to say at that time.
Although I pray for no recurrence, should it happen anyway, I have seen several of my chemo sisters face their recurrences with dignity, hope, and positivity, so I’ve had good examples to follow. And I hope I can be a positive example to any other woman facing this devastating disease.
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