Ignorance
Sharing an illness with the whole world is not easy; however, since so many women are ignorant about ovarian cancer, I have decided to share some of my story. Surprisingly, many doctors are ignorant to the chronic disease called ovarian cancer and many women often feel put off by doctors who are either ignorant, don’t have time, don’t care, or just don’t want to listen to their patient’s complaints of aches and pains. I am not complaining about all doctors. My GYN-Oncologist is an excellent doctor, and I trust him. However, I have heard horror stories from so many women in my group of the Ovarian Cancer National Alliance (www.inspire.com). My training is not in medicine, but because of my condition and hope for a cure, I continue to research ovarian cancer.
My experience with ovarian cancer began in 2008, two years before my diagnosis in 2010, although I did not realize it then. I spotted (one small spot of blood) and went to a general practitioner who ordered a CAT scan. She said I had fibroid tumors and it was normal for my age. From what I’ve heard from the other women in my ovarian cancer group, the doctor’s comments were not uncommon. I suppose once we reach our 50s, we are at that “age” when certain signs and symptoms are commonly caused because of our age, especially if we are women. She said that I was probably ovulating, although menopause for me had occurred more than ten years ago. She told me that women my age ovulate from time to time, regardless of age. I had no idea of the seriousness of my condition. I was ignorant. Ovarian cancer is not an old woman’s disease; it can happen to almost any female regardless of age.
Symptoms
During the next two years I awoke most mornings telling my husband I was tired. He replied, “How can you be tired? You just woke up.” My back hurt, my legs hurt, and I experienced shortness of breath just walking up the stairs to go to my office. Since I am not a complainer, I let it go.
Two years after the earlier CAT scan I spotted again in April 2010 (one small spot of blood on the tissue). However, by that time my abdomen had grown to the size of a woman seven months pregnant. I had no idea that my abdomen was filled with ascites (an accumulation of fluid in the peritoneal cavity). However, I knew that something was definitely wrong.
Although I had other symptoms, they were vague and could be attributed to other causes, like age or perhaps, urinary tract infections. My symptoms included frequent urination, constipation, diarrhea, fatigue, shortness of breath, leg and back pain. Again each symptom could all be attributed to various illnesses, including my age—there’s that word again—age.
As I gained fluid in my abdomen, I could not eat a normal diet without quickly feeling full and bloated(another symptom of ovarian cancer). I knew something was wrong. Although I was eating less, I was gaining weight only in my abdomen. My waist size was expanding.
Denial
As I researched my condition on the internet, ovarian cancer kept coming up. I researched and learned more about ovarian cancer, but I did not want to admit that I had cancer. I made an appointment with my primary care physician (by that time, I was going to a different doctor). My primary care physician immediately referred me to a gastroenterologist (GI) who ordered a CAT scan. Within hours the GI called me for a consultation. His whole demeanor had changed. He was not smiling; he was dead serious.
Today, I thank him for saving my life—for it was he who referred me to my GYN-Oncologist who made it possible for me to live longer than I would have, had I not been informed.
After his referral to a GYN-Oncologist I picked up both copies of the CAT scans (the prior one from two years before and the current one ordered by the GI). I was surprised that the initial CAT scan completed two years prior suggested that I be checked again; however, I was not given that specific information. I trusted the first doctor and did not figure I could read the CAT scan anyway. However, the doctor that reads the CAT scan also writes an explanation giving his results—the information was right there—that I should have checked. Thus, I recommend that if you get a CAT scan, get a copy for yourself. Don’t take anything for granted.
I spoke with my daughter and my niece, both nurses who said it sounded like ovarian cancer. My niece told me that although she was not a doctor, my symptoms all pointed to stage IV ovarian cancer. The statistics relative to stage IV are difficult to ignore as it is considered a death sentence by many.
I was 56 years old when I was diagnosed with stage IV ovarian cancer in May 2010. My first thought was death, and almost everyone else thought I was going to die. Of course, I will die eventually, but it won’t be today.
Statistics
Ovarian cancer is the deadliest gynecological cancer among women. The latest statistics from the American Cancer Society 62% women diagnosed with ovarian cancer are stage IV and have a 28% chance of living passed the 5 or 6 year mark. Stage IV means distant metastases to the liver, diaphragm, or outside the peritoneal cavity. Women diagnosed with earlier stages sometimes have a higher rate of survival, but not always. Only 15% of the women are diagnosed early (at stage 1). Treatment, body, and cancer type also bear consideration on actual statistics.
Most women with ovarian cancer experience depression. Although I am not on anti-depressants now, I did take them for almost two years. I belong to a group of women with ovarian cancer from all over the world. We have formed a sisterhood and share information through inspire.com. We have lost so many of our sisters from this dreadful, elusive disease. So, yes, it is an emotional disease as well. Meanwhile, the chemo creates a toxic environment inside our bodies. Some women live a lifetime without recurring while others recur (regardless of stage) and continue medication or alternative treatments until there are none left.
Reality
As one sister spoke of dying, she said, “I never knew it was an Olympic sport.” Being part of a group with so many sisters earning their wings is quite difficult. Not a week or two goes by without a sister or two or three taking their final flight. Although we are not without our survivors, many take that fatal flight near the fifth to sixth year mark. Of course, everyone expects us to remain optimistic, and I try to remain so. Hell, since then, I’ve even placed a sign on my office door that reads, “Attitude is everything, so pick a good one!”
Surgery
After viewing my CAT scans, my GYN-Oncologist chose an oncology surgeon to assist him through the procedure. (My GYN-Oncologist is such a serious man, but I’ve managed to make him smile a few times.) About three weeks after he met with me I had a radical hysterectomy with optimal debulking. My abdomen was cut open from just beneath my bra line down to my pubic area. My internal organs were scraped, shaved, cut, removed and moved around. I was sore for a long, long time. I underwent an exploratory laparotomy, total abdominal hysterectomy with BSO omentectoy, resection of multiple peritoneal masses by either excision or with the CUSA, right diaphragmatic resection with chest tube placement, an appendectomy, and Port-A-Cath placement to move chemo into my abdomen. I was optimally debulked, having no areas of residue disease greater than 4 to 5 mm in size. The whole procedure sounds both gross and exciting, depending on which side of the table you are located.
I was diagnosed Stage IV (pT3c NX M1-liver). My abdomen and “girlie parts” were literally filled with cancers, type: carcinosarcoma (malignant Mullerian mixed tumor), along with high grade adenocarcinoma, multiple serosal implants, my appendix was removed, my liver diagnosed as metastatic poorly differentiated adenocarcnoma, and part of my diaphragm was removed. Let’s just say thirteen different specimens were evaluated with some type of cancer. The final pathology report showed a carcinosarcoma that involved the ovaries and serosal implants on the uterus. I actually had two different cancers on one of the ovaries while the other only had one type of cancer. The diaphragm the liver also showed metastatic poorly-differentiated adenocarcinoma and I had resections to both organs. I definitely wondered if I was going to die.
Recovery
After spending almost two weeks in the hospital, I was released and sent home with a home health care nurse visiting me twice a week. The hospital stay was gruesome. Most of the people were nice, but being hooked up to all those wires and then when I finally could get up I slipped and fell before making it to the restroom. I felt incredible pain. I could barely walk. I forced myself to go on walks up and down the hall to gain my strength back so they would let me go home.
I also had this weird male nurse for a few days who I caught watching me as I slept. My husband and I finally insisted upon another nurse. He also said weird things to me, like “I was watching you while you slept, and you had a tear dripping from your eye. Do you want to talk about anything?” How many nurses have time to sit there and watch you sleep? I complained, my husband complained, and I was assigned another nurse.
I hated the hospital stay and was happy to go home. I was thankful that I had my husband and my in-laws there to care for me. My appetite was nonexistent, although I wanted to eat. I just couldn’t eat much at that point. I ate small meals until I regained some strength. I had no idea if I was going to make it or not. I was miserable. I looked like a person who had just been released from a Nazi concentration camp. My bones had never shown as they did at this time.
My postoperative recovery was complicated by readmission to the hospital for an abdominal wound abscess that was drained, and I was sent home a few days later and treated with a wound vac that healed the hole in my abdomen much quicker than I thought possible. The wound vac is an excellent medical tool. A home health care nurse visited me twice a week during this time.
Before the surgery my CA 125 was 1400; eight days after surgery it was 181. The CA 125 stands for Cancer Antigen which is a marker of protein found in a greater concentration where ovarian cancer cells are present; however, the marker does not necessarily work for everyone and is not always a reliable tool used alone. The CA 125 comes from a blood sample, which can range in units of single digits to thousands, but 35 and below is usually considered normal, although other illnesses or reasons may cause a rise in the number. The figures are supposedly more accurate for post menopausal women. A decreasing CA 125 number usually means the chemo is doing its job and killing the cancer; whereas a rising CA 125 often means a recurrence which may or may not visibly show up on a scan. I am still trying to understand the benefits of the CA 125. The CA 125 is usually used in conjunction with a scan if the number rises.
Treatment
Six weeks after my surgery and the healing of my incision, I was finally well enough to began my first chemotherapy treatment, an intravenous (IV) cycle of Taxol and Carboplatin chemotherapy. My first treatment took so much strength out of me. I just wanted to sleep, and sleep, and sleep. My body ached and I was so sore, much like I had flu-like symptoms, only heavier. I don’t remember much about this time, except that I felt like hell. That chemo blanket covered me. I was weak. I experienced aches and pains all over my body, slight neuropathy, a little nausea, fatigue and depression as I also began to lose my hair. Sometimes, I hurt so much that I cried. My husband played the DVDs by Celtic Woman to help get my mind off my illness. My husband doctored me, fed me pills, soup, water, juice, and whatever he could get down me. I felt like I was going to die. I cried because I hurt so much. The pain pills never took away the pain. I slept some more, took pain pills and stayed “out there” in never Neverland for what “seemed” forever. My fellow faculty brought meals and greetings. I turned to meditation and light exercise along with anti-depressants before bedtime. Everyone handles chemo differently, and each chemo treatment is different.
My second chemo treatment, a regimen of 24-hour Intraperitoneal (IP/IV) was postponed due to low blood counts. Thus I stepped up my fight with more fruits and vegetables that I was instructed to wash and wash (about 12 times each) to make sure they were chemical free which is ironic since chemo is such a heavy dose of chemicals. I also took IP-6 Inositol, Vitamins C, B6, Iron, (Chromagen Forte), Gulutamine powder capsules, my one-a-day, Ensure w/stool softner when needed, and at least 1 liter of water/day. I was anemic due to my first chemo treatment of taxol/carboplatin. I eventually began to feel a little better as many of my aches and pains subsided slightly. I was not looking forward to another chemo treatment. Just when I started feeling a little better, it was time for another treatment (three weeks apart).
Anger
I had my hair cut, but as it began to fall out (another side effect of chemo), I opted to shave my head. Watching my hair fall out day after day was getting the best of me. (Once it is all gone--you don't have to watch it fall out.) I did pick up a free wig at the Cancer Society, but it was so ugly that I never wore it. It was the only one they had that was closest to the color of my original hair. I preferred scarves or nothing at all. My scalp hurt like hell. Later I ended up buying three wigs of different shapes, colors, and sizes.
Treatment
Soon I returned to the hospital for a cycle of IV/IP chemotherapy of Taxol and Cysplatin, consisting of a 24-hour infusion of Taxol followed by Cisplatin via Intraperitoneal (IP) which flowed through my port into a tube just under my bra line into my abdomen. However, I vaginally lost much of the chemo later that night soaking my under clothes.
About a week later, I returned to my oncologist/gynecologist. Because my doctor feared an injury to my vaginal cuff, which could have meant additional surgery, he decided not to treat me via IP, but to continue Taxol/Carboplatin IV. IP may be the best way to treat ovarian cancer because it washes directly onto the abdomen lining, rinsing over any cancer that still remains. However, the truth is no one really knows for sure because each individual’s cancer is in fact individual to that person, which means our bodies are different; and thus, our cancer plays upon are differences, making each cancer experience unique. I’ve even read that cancer often disguises itself as parts of an organ and hides inside the body.
Anger
After IP treatment, I could barely stand up. The IP chemo weakened me even more than the first treatment. I cried because it hurt so much. My husband had to literally hold me up to get me into the car when I went to the hospital for tests and doctor visits. Chemo brought about some of the most painful days of my life. If the best chemo brings down the body’s defenses and weakens the immune system, bringing pain to every possible place in the body, then I had damn good chemo. Damn because it hurt so, and good because it is supposed to be killing the cancer.
Chemo is good at killing cells, but it does not distinguish between good and bad cells. Carboplatin includes alkylating agents like mustard gas derivatives; how good can that be for the human body? That type of information moved me to read more about chemo. I learned that Paclitaxel, also called Taxol, is derived from Yews, a type of tree that can be found in various parts of the world. Some yews are considered to be up to 4,000 years old. Many parts of the tree are considered toxic. The word “toxic” has followed me ever since I was diagnosed with cancer. Paclitaxel are found in the leaves of European Yew trees. Wikipedia notes that “In the Central Himalayas, the plant is used as a treatment for breast and ovarian cancer.” Taxol is also created out of the Pacific Yew, Florida Yew along with other Yew trees from various locations. Ironically, yew has been used as a killing tool, a poison, used for suicide, assassination, and as an arrow poison, according to Yew Tree Facts, for centuries.
Treatment
So faithfully, every three weeks, I intravenously consumed Taxol and Carboplatin. My small veins were so broken from needles that the doctor finally inserted a port (underneath my skin) just beneath the collar bone in my chest. The port or a portacath is a smalI medical appliance wherein a catheter connects the port to a vein. The port saves the veins. In fact 14 months from my last chemo, I still have my port, although the IP port that went into my abdomen was removed when we decided IP was not an option for me.
To stay on schedule (every three weeks) with the chemo I also received Neulasta shots prior to treatment each chemo because the chemo caused low platelets in my blood. The Neulasta stimulates the growth of “healthy” white blood cells in the bone marrow. For me, the Neulasta shot brought heavier side effects; the Neulasta shots prolonged the pain my body endured with each chemo treatment.
Three months later my CA 125 dropped to 45. I felt like the chemo was working.
Dancing with NED
I went through six taxol/carbo treatments which finally led to no evidence of disease (NED) in January 2011, my last chemo being December 2010. I keep hearing that ovarian cancer is a chronic disease which makes me anxious. Experts note that cancer is also used to describe what “may be thousands of distinct diseases.” I also have a history of cancer on both sides of my family, including ovarian cancer of a maternal great aunt and a paternal aunt who both passed away because of it. However, I tested negative for BRCA 1 and 2, a genetic test for breast and ovarian cancer.
By December 2010 my CA 125 dropped to 20, in May 2011 down to 17 (my lowest CA 125 to date), then in August it began to rise to 22, then in December my CA 125 rose to 31.5 at which time I began to notice a little nausea. On January 14, I noticed my shortness of breath while performing everyday activities around the house. When I went back to teaching on campus, I noticed shortness of breath after climbing the stairs. I also teach online, but this semester I am teaching a Nonfiction Prose class in a regular classroom setting. The exercise is good for me, and I love being back in the classroom.
Anxiety
On January 23 my CA 125 rose to 34—the highest end of the normal range. I had another CA 125 done about 10 days prior, but the hospital lost it. When they found it, the nurse called and said it was within normal range—anything below 35 is considered normal. I was so busy with school work I neglected to ask the score. My doctor will see me in March and another CA 125 will be completed at that time. I doubt if any treatment will be performed until the CA 125 reaches into the hundreds or something shows up on the scan.
Side Effects
The side effects of the chemo still remain. My body hurts, my joints ache, and I cannot sit for long periods of time; otherwise, I hurt more. My vision is deteriorating. I have gained more weight, which everyone says looks good on me, but I’d still like to lose about 20 pounds. I quit smoking before my surgery two years ago, so naturally, I’m going to be a little heavier. I don’t exercise as much as I did before the surgery. I usually sit in front of the computer writing or grading papers.
I have my port flushed every six to eight weeks. MY GYN-Oncologist examines me every three months along with a CA 125 blood test the week before. Although treatment is ongoing, I am still NED as cancer was not visible on my last CAT scan which was in November.
The New Normal
I attempt to live a normal life, but I get anxious. I have problems sleeping at night and wake several times during the night. Sometimes I wonder if I will awaken the next morning. Many of the women with ovarian cancer shop one day and die the next whereas many ladies suffer throughout their cancer experience and die bitter deaths.
I’ve learned that cancer is both political and commercial. Breast cancer/pink is now a business. Teal represents ovarian cancer, but breast cancer gets more attention (we say because the breast is so visible).
Also, play attention to all the drug shortages that are currently taking place across the United States, not only for cancer patients but other diseases as well. These shortages should not be taking place in our country. Now some women are traveling to France and other countries to continue their treatment with certain chemo drugs.
Survival
My story does not end here. I am a cancer survivor. I will continue to eat less meat and more fruits and vegetables because diet is an excellent method to fight cancer and other diseases. I also eat less dairy products and processed foods. Our hurry-up lifestyle promotes poor eating habits, and thus we have to work to practice healthy diet habits.
I’d like to think that statistics for survival are getting better, but they appear to be leveling off. According to cancerresearchuk.org, survival rates in England and Wales steadily increased from the 70s through the mid 90s where they begin to level off through 2007 (
http://info.cancerresearchuk.org/cancerstats/types/ovary/survival/).
Ovarian cancer is not the same experience for every woman. Each woman travels a different road. We have our own stories. Only 15% of the women diagnosed with ovarian cancer are diagnosed early, which has to change. Ovarian cancer is the ninth most common cancer in women and the fifth leading cause of cancer related death among women, making it the deadliest gynecological cancer (Ovarian Cancer Alliance Group).
