I Didn’t Know the Symptoms of Ovarian Cancer and it nearly Killed Me
I am Judy Baker and I am a wellness warrior
I survived ovarian cancer and I am thriving
I was diagnosed in late December of 2013.
I had been feeling less that excellent for months. I kept telling myself it was overwork, adrenal fatigue, muscle strain from working out. I even suspected a case of pancreatitis or a gall bladder attack. Anything seemed more likely to be the source of my discomfort. Cancer was on my radar. I was in denial.
My father had breast cancer. It had spread to other organs and his lymph nodes by the time he got the diagnosis. He underwent a radical mastectomy, which removed not only breast tissue but muscles and lymph nodes in his chest and arm.
First, let me give you a little background. My father was never ill. He retired from the U.S. Postal Service with three full years (365 days x 3) of sick leave, accumulated over 25 years of service. He was never absent from work. Not ever.
He and I walked everywhere. Usually 5-10 miles every day. I carried that habit with me when I moved to San Francisco.
He loved to read, ate pretty well. He didn’t consume alcohol, other than a very occasional beer.
He controlled a mild case of diabetes with oral medication and diet.
He was a healthy man up to the day he received his diagnosis of breast cancer. He had a hard, red lump in his chest. Back then, as it is today, it is relatively uncommon for men to get breast cancer. It was rarer still to know about this disease affecting men.
He had symptoms for a long time before the official diagnosis. Over the next seven years, he had cancer of the prostate and colon. He got ill for the final time at 76. He had pancreatic cancer. Pancreatic cancer symptoms mimic those of diabetes. He passed away a few days before my 21st birthday, about a year from the time of diagnosis. While there have been advancements in treatment, pancreatic cancer has one of the lowest survival outcomes. He suffered during that final year. I told myself I would never go through what my father did.
Dad refused chemotherapy after each surgery. 40 years ago chemo was primitive, and the side-effects of the cure were often worse than the disease. I can understand his decision. For many years, I harbored a secret fear that I would someday receive a diagnosis of breast cancer. I anticipated suffering like my father. I wanted to deny that this could or would happen to me, but somewhere in my mind, there was a seed of doubt.
Because of what I saw happen to my father, I elected to forego having children. I was sure that if I did, I could pass on defective genes. I didn’t think that was fair.
2013: I was in Denial
I Started To Notice Something Was Off in My Body
Around November of 2013, I began to feel off. I went to lunch with a friend to celebrate her successful treatment for Hepatitis C. We had a date at a restaurant that is known for its yummy food. I ordered something I thought would be delicious. My food arrived, and I took a few bites. I was full. I chalked up how I was feeling to the effects of stress and feeling tired from not enough sleep.
My difficulty eating persisted through the Thanksgiving holiday and into December. I appeared bloated, so bloated that I could not fit into most of my clothing. I thought I was gaining weight and that I was just fat.
I noticed other symptoms. More and more frequently, I had to step out of my exercise classes and rest for a few minutes before continuing. I attributed this to being busy and working too much.
I could have auditioned for “The Walking Dead” based on the lovely gray color of my skin. I looked as awful as I was feeling.
I realized I was in serious trouble when my upper back seized up while I was in Child’s Pose during yoga class. I felt like someone had slammed into my back with a club. I couldn’t breathe. My muscles were spasming. My body was doing its best to get my attention. I continued my denial that anything major was wrong with me.
Uninsured and Out of Luck
At the time, I did not have medical insurance. I believed I could postpone getting help until after January 1, 2014, when Obama care would start.
My body couldn’t wait out the calendar. The stabbing pains in my abdomen forced me to see a doctor in mid-December.
Unfortunately for me, my primary care doctor was on vacation. I agreed to a visit with one of his associates. She was useless and infuriating. I told her my symptoms, but she did not hear me. She kept insisting that I needed to have a colonoscopy even though I didn’t have any problems with my bowels. I was clear this was not the solution for me and that this was a doctor who was of no help.
I went home, and the pains got worse than before. Despite my misgivings, I made another appointment to be seen by this medical practitioner. Again, the doctor directed me to get a colonoscopy. Why couldn’t she hear me?
I remember screaming at her. I was in agony. Her only other solution was to recommend I go to the Emergency Room. I told her I didn’t have insurance and couldn’t afford the cost of care in the ER without coverage.
Getting Worse Before I Got Better
The next few days I continued to get weaker. I hadn’t eaten in about two weeks and yet, there was this huge belly. Three days after Christmas, I gave in, and my husband drove me to the Emergency Room.
I was delirious with pain.
My husband had scheduled meetings with prospective clients for that Saturday. I told him to keep the appointments. I was sure I was having a gall bladder attack or a severe case of pancreatitis. I asked him to call a friend to come and stay with me while awaiting help in the ER.
I think I was there for about 5 hours. The head of the ER came over to me and said he had bad news. I asked what it was. He said we don’t know the type, but according to my blood work I had cancer.
He prescribed a heavy-duty narcotic for my pain and sent me home.
A Long, Sleepless Night
The drug had no effect on the pain. I spent a sleepless night wrapped in blankets on the couch. In the morning, my pain was off the charts. Back to the ER.
The doctor on call looked at me, read my chart and concluded I had a build up of fluid in my belly. He said he would do a procedure to drain it, paracentesis.
He told me later that this is usually only done when there is a radiologist present to guide the process. The doctor nearly gave up doing this procedure on me, but, because of my extreme discomfort, he persisted.
He drained 5.5 liters of fluid from my abdomen. The fluid build up had been pressing all of my organs. It made it impossible for me to eat. Once the fluid stopped pressing on my organs, I could take a deep breath. My pain lightened.
Signing Up for Covered California Was Like a Car Wreck
Signing up for Medical Insurance was nearly as heart-stopping and painful as having 5.5 liters of excess fluid pressing on my stomach. My insurance broker got the process started, but it took me more than 3-hours to complete my application online. The deluge of people attempting to sign up swamped the woefully under capacity computer servers and ridiculously written software. I persisted. I got registered in time to start my coverage on January 1, 2014.
Happy New Year
My journey with cancer had just begun. On the first Friday of 2014, I had the last appoint of the day with my real doctor. He was running late. I suffered sitting in the waiting room with my husband for over an hour. I wanted to lie down on the floor. Sitting up was agony.
We finally went into the exam room. For the next hour, my doctor asked questions, shared ideas and took action. He called Marin Cancer Care and scheduled my first visit with a gynecological oncologist for early the following week. He also contacted the gynecological surgeon for me at UCSF for that same week.
Becoming a Wellness Warrior
I met with my new wellness team. I listened and learned what I needed to do to survive. I was clear that I was going to do everything necessary to survive.
I approached chemo with hope and good humor. I got dressed up for each visit to the hospital infusion center. My husband accompanied me to each appointment. He was my chauffeur and support.
We discovered great restaurants where we would celebrate each successful treatment with a delicious meal.
Losing my Hair
I was giving Benedryl and other anti-nausea medication before each chemo cocktail of carboplatin and taxol. I experienced few adverse reactions to the drugs. What a surprise. I have a history of drug sensitivities and allergies, yet here I was getting poison to kill cancer and I was o.k.
Of course, my oncologist said that my hair would fall out. And it did. Right on schedule. Two weeks after I started chemo. I thought that I prepared myself for this. My stylist cut my shoulder length hair very short before it began to fall out. When handfuls of hair came out when I washed my hair, it was time for the next step. My stylist shaved my head. From experience, she recommended shaving my head before it got sensitive. That day was one of the hardest for me. I like my hair. My hair is on the fine side, it is usually shiny and frames my face. I have a few silver hairs sprinkled among my dark brown hair. Losing my hair was like losing my identity.
I was not ready for a wig yet. I had lots of hats and scarves to cover my head. I gradually embraced the ease of no hair. Lucky for me I have a well-shaped head. I rocked my big earrings. I changed my style of eye makeup to mimic having eyebrows and eyelashes. I looked pretty good for someone who was so sick.
Chemo Was Relatively Easy for Me
It wasn’t at all what I had feared. It was nothing like the fantasy I had in my head. Not at all like what I pictured based on movies and television depictions of cancer treatment.
The first infusion was a full day. I brought my laptop and phone with me thinking I would be able to get some work done while I was hooked up to the drugs. I failed to take into account that I would not be able to move about at will. My laptop stayed in the bag. I slept a lot. It was like a spa day without the glamor.
I never had bouts of nausea. I had a low level of unease. Chemo attacks the cells that line your stomach which often results in major upsets. Not for me. I did have a problem after the first treatment which was easy to resolve with a homeopathic remedy called “Cleanse More.” Once I had that in my kit, I did well.
I did have fatigue. I learned to sleep whenever I could. I found that I napped well during the day. I didn’t sleep well at night even if I didn’t nap during the day t, another common side-effect.
Going to the Gym during Treatment
I continued going to my gym during treatment. In fact, I scheduled treatment to minimize missing my usual workouts. I did what I could each session. I modified my workouts as needed. Sometimes, I would have to sit part of the time on a physio ball instead of standing for an entire class. I used lighter hand weights.
I continued to attend classes because I have a strong network of friends at the gym. Among them are many other cancer survivors, including one of my instructors. She had a double mastectomy over 20 years ago. She is a beautiful, inspiring and fit woman whom I admire.
I did have some days when I was not my best, and I allowed myself to stay home. I later learned that by continuing to exercise I was helping my immune system do its best work.
January to April
The first half of my treatment was designed to reduce or eliminate any cancer cells in my peritoneum, my intestines, and colon. The chemo apparently was working as my CA 125 blood tests confirmed. I told my doctor I could feel the cancer cells being gobbled up. I pictured Ms. PacMan chomping each of those nasty cells and ridding my body of disease.
According to the Mayo Clinic: “CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood. A CA 125 test may be used to monitor certain cancers during and after treatment. In some cases, a CA 125 test may be used to look for early signs of ovarian cancer in women with a very high risk of the disease.”
After three rounds of dose dense chemo (18 treatments), I went off chemo for a month before surgery to remove my ovaries, uterus, fallopian tubes, and my omentum. This procedure is known as debulking. Taking out all the parts and pieces not necessary in the abdomen.
I had peritoneal cancer, the lining of the abdominal cavity is the peritoneum. It serves to exchange fluids in the body and cannot be removed. Peritoneal cancer is one of the less common types of ovarian cancer. Here is an excellent
Here is a good article that will give you more information about types of ovarian cancers. It includes definitions, illustrations, symptoms and where to find additional resources and information.
The thought of surgery was scary. I had only two minor surgeries before this, both relatively small in comparison. I had my tonsils and wisdom teeth out at 20. At 31, I had the TMJ disk removed from the left side of my left jaw. My tonsillectomy and jaw surgery required 1 day and one night in the hospital. I was not sure what would happen with this major surgery.
Being My Own Advocate
The day of my surgery, I met with the anesthesia team. They wanted to give me an epidural. I insisted I didn’t need one. I had to argue with the residents; they head anesthesiologist and my surgeon. I prevailed.
Surgery went smoothly.
I was a bit woozy when I woke up. Fortunately, my dear friend and health care provider, Deborah Myers of Health at Your Fingertips worked with me before and after surgery to help my body prepare and then release the anesthetic.
I had zero appetite the entire time I was in the hospital. The food was nasty, and I was not hungry.
I had a little pain, which was a surprise.
I was up and walking around the first day.
I won’t go into the details of being in the hospital except to say I was anxious to get out of there. If I was going to eat anything, I wanted the food to be fresh and nutritious. The processed, canned and chemical laden food served was a big incentive for my wanting to get home.
I was released after four days and returned home.
My assignment was to walk every day for at least 30 minutes. We had unseasonably hot weather that April. I had to get up and out the door in the early morning to avoid the upper 90-100° temperatures. I had fun exploring the neighborhood on my daily walks. I stopped to take pictures when I found something beautiful. There are lots of lush flowers in my neighborhood, and the warm weather encouraged the floral display.
I wanted to dive into the pool at our house but was instructed to stay out of the water until my stitches were out. I settled for putting my toes in the cool water until I got the o.k. to resume normal activities.
I was back at the gym about two weeks post-op. That was a triumph for me.
Recovery by Inches
I expected to bounce right back after surgery. I was surprised at how long recovery would last. Even today, I have some limitations. I am getting stronger and smarter about my physical body all the time. I tire a bit more easily. I don’t like wearing shoes with closed toes because they often trigger neuropathy pain. Some shoes are completely off my list of wearables. I was a sock aficionado before treatment. These days I seek out supportive and stylish socks. Luckily, my friend Jeanette Fung is the owner of Sox de Vine, and she carries a beautiful selection of socks for all occasions and needs. Even if you don’t live in Sonoma, you can shop there. I have compression knee highs that are so cute no one would guess they are support socks.
I had three more rounds of chemo following surgery. This second half is where my hands and feet became victims of chemo-induced neuropathy. A smallish price in exchange for my life.
I temporarily lost some of my sense of smell and taste too. I like to think both these senses have fully recovered. It had taken nearly a year before that happened.
July 8, 2014
I celebrated my last chemo treatment by flying to San Diego to visit my family. I was wearing wigs by this time. I had several, bright pink, bright blue, a short ginger colored one, and others that friends gave to me. I got to show off many different sides of my personality with my variety of hair colors and styles.
- My hair started coming in September 2014
- My eyelashes and eyebrows were a bit slower to fill in.
- It was nearly a year before my legs felt lighter than 500 pounds each.
- I’m still working on rebuilding my abs.
- I am working with a trainer, Johanna Avery, in the Pilates Studio of my gym to improve my strength and flexibility (and it’s working!)
- My hair today is just past my shoulders and looking lush and full
- I get my blood tested every four months, and my CA 125 is low and steady
- To monitor my breast health, I get an annual mammogram which alternates with an MRI because I am BRCA 2 positive with no sign of disease
- I see my oncologist every four months. I will move to a six-month cycle next spring which will mark my 3rd-year post treatment.
- I have a great support group that meets for lunch once a month. All of us are survivors, and we laugh and share with each other in a positive way.
- I get regular acupressure treatment from Deborah Myers, Health at Your Fingertips to keep my energy in balance.
- I practice the Daily Clean Your House Flow every day (sometimes multiple times during the day). It keeps me in touch with my body, balances my energy and emotions and boosts my immune system.
- I do things that make me happy every day, like listening to the Happier Podcast from Gretchen Rubin.
- I only work with clients who are enjoyable.
- I don’t hang out with toxic people.
- I watch silly comedies.
- I volunteer in my community
- I laugh a lot.
- I smile a lot.
- I sing every day.
- I tell people I love that I love them.
- I appreciate being alive.
- I learned to ask for help.
- I am more patient with myself.
- I let go of the bad and focus on the good in my life.
- I am filled with gratitude for the good people who are in my life and I tell and show my appreciation.
- I continue to be a wellness warrior.
- I ask questions.
My Wish for You
I hope you never have to know a day of pain. If you do, get the support you need to regain your good health.
Good health is worth more than gold. Enjoy your life, your friends and family.
Don’t ignore symptoms. The sooner you become a wellness warrior, the better.