Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia in 2005 I was now unable to work and was quickly approved for Social Security Disability Insurance (SSDI). Beginning at age 28, for seven years I’d worked hard, sometimes as a single mother, to earn a bachelor’s in psychology and a master’s in communication disorders. The next year was spent completing the required clinical fellowship and passing the national exam to be licensed and certified as an audiologist and hearing aid dispenser. Following that I worked as an audiologist for 9 years and then spent 3 years working for a pharmaceutical company. After 2 car accidents, several mountain bike crashes, herpes simplex infection, chronic migraines, a tick bite, long term thyroid disease, endometriosis and hysterectomy, I began experiencing odd symptoms with exhaustion following activity around 1986, which slowly progressed until I crashed in 2005. In the past I was a competitive athlete enjoying many sports and racing and enjoying mountain biking and road cycling. Since aligning myself with The Solve ME/CFS Initiative (Formerly CFIDS Association) and creating an annual charity mountain bike event, my ME/CFS advocacy work has evolved into other forms. I am also an artist, and when I am well enough I paint. I depend on my disability and my husband for financial support, and he shares much of the responsibility of running a house because of my physical limitations. Most of my time and energy is spent on managing my disease, so when someone else in my life needs support it presents a great challenge.
During the few months preceding Christmas 2014 my 85 year old mother was suffering from terrible pains in her abdomen, loss of appetite, and digestive issues. She’d lost weight, something that never happened to her, and just felt unwell. We tried to get a CT scan to figure out the source of the problem, but three months into this we were still waiting. Then, the day after Christmas at 8 PM the abdominal pains were too severe for her to bear, and her upper back was hurting so we had an ambulance come and take her to the emergency room. After several hours there she finally had a CT scan of her pelvis, and the results came in at 7 a.m. just as the shift changes were occurring. The fresh faced E.R. doc came in and hung the image, and I could tell he was struggling with what to say. He explained to me, my Mom and Dad that there was a sizable mass in her abdomen on the left side near her stomach, and he hesitated before adding that he was fairly certain it was cancer — ovarian cancer. Ironically Mom had undergone a hysterectomy in the 1960’s, and she and I thought they’d taken both her ovaries, and she’d been on estrogen replacement therapy for decades. When I questioned whether her ovaries had both been taken out my Dad said, “I remember the doctor telling me that he left the one ovary on the left”. It was shocking to process all this, especially after having been up all night, and I remember thinking that I felt really bad that she’d leave the E.R. with nothing to really help her deal with the pain. The woman who helped me fill out papers to release my Mom asked why she’d been there. When I explained she said her Mom had ovarian cancer and she highly recommended the same surgeon who save her Mom’s life. She wrote his name and within days we had an appointment with Dr. Padilla Paz, a very compassionate and knowledgeable surgeon who specializes in gynecology and oncology.
We were given more details about the mass, it was 10.1 X 11.2 X 9.4 cm in size and had likely been fast growing. I told him that Mom had also told her primary doctor months before that the lymph nodes in her neck were inflamed, and at that time he had only suggested monitoring them. Dr. Padilla hastily got Mom an appointment to have her lymph nodes biopsied within that week. That test was positive for ovarian cancer, and he also explained that the lymph nodes on her aorta were also inflamed. Her CA-125 was also quite elevated as it is with ovarian cancer. She would need 3 cycles of chemotherapy, weekly treatments for 9 weeks with two drugs, followed by surgery, and later he said she’d likely require 3 more cycles of chemotherapy. If she chose to do nothing she would probably only have 6 months to live, but if her cancer responded well to chemo, and if he did a heroic surgery she could be cancer free for 5–7 years! That was a lot to accomplish, but a very good prognosis for someone her age.
In addition to the pre-drugs (steroids and Benadryl to prevent allergic reaction to the chemo and anti-nausea medications to prevent stomach upset) her chemo dosing would include 2 drugs on weeks 1, 4 and 7, and only one chemo drug the other weeks. She has suffered a long time from vasovagal syncope, a disorder of the nervous system which causes her to feel lightheaded and/or faint, and usually it is related to bowel movements. She is prone to constipation so she takes Mirilax every night to stay regular. She also doesn’t tolerate chemicals well, and we were concerned that chemo might cause her to become constipated, a problem for which she’d previously had to be hospitalized to remove an impaction. This is not at all pleasant. Two days after the first chemo dosing she became constipated, so she had to take a laxative. She woke that morning not feeling well, fatigued and lightheaded, but got up and made her breakfast. As soon as she started to eat she felt she needed to go to the bathroom. While on the toilet she felt faint, so she called to my Dad. He tried to help her get to the bedroom, but she passed out in his arms between the bathroom door and the hallway, and they both fell to the ground hitting the tile floor. They were both bruised and Mom had hit her head just above her eye.
In spite of this incident Mom went through the remainder of the 9 weekly chemo treatments like a real trooper. Fortunately she had only mild symptoms which were very manageable. She lost her hair, which was very devastating for her. We initiated as much support as we could get; two meals on wheels delivered each day, home health nursing to check Mom twice a week, and physical therapy once a week. A medical supply place delivered a walker with a seat to help her on days she might feel week or lightheaded, and to prevent falling.
During the 9 weeks of chemo her CA-125 had been steadily reducing, and by the end it had normalized. Another CT scan after the chemo showed that the tumor had shrunk considerably and the lymph nodes were no longer inflamed. This meant that her surgeon could do laparoscopic surgery, and if she would agree he’d do it using the da Vinci robotic system, which would afford him greater flexibility and visibility, all of which would be less invasive and provide an easier recovery for Mom. So she agreed to that method and 18 weeks after she’d gone to the E.R. she had the surgery.
The surgical procedure was a little more complicated than Dr. Padilla Paz had expected, but he was able to remove the mass from the colon where it had attached itself and from which it had stolen blood supply. The mass had also penetrated the vaginal wall, so that required cutting through. Fortunately the rest of the pelvis was pristine. Because he felt fairly confident that he’d removed all the cancer cells, at least all he could see, and there is no current evidence to support that further chemo will reduce the recurrence of cancer, Mom chose not to have any further treatments.
It’s now been nearly 4 weeks since her surgery and she is recovering more every day. Her hair is coming back in and she is beginning to do more chores and even socialize a little again. She had her 86th birthday during chemo and Mother’s Day was just after her surgery. We celebrated in our own quiet way.
There are no words to describe the gratitude we have for the spectacular outcome she has had, especially given the level of disease she faced. All the wonderful people with whom we worked deserve our thanks.
This experience meant many things to me, but in no small way it shined a bright light on the dichotomous paradigm that makes up the disease cancer vs that of ME/CFS.
The word cancer evokes a response in people that is unparalleled by any other disease name because it conveys what we’ve been falsely led to believe, that our mortality is our greatest weakness, and that death is the worst of all possible outcomes. Those of us who have an invisible chronic disease, especially one with a minimizing name, too many definitions, no known cause and no real treatment, who face disbelief of its biological reality and severity, and many of whom are too sick and week to leave their rooms are the keepers of a big secret; that the real worst case scenario is to live forever sick and sometimes to face that with little hope for change.
The fear of cancer’s terminal nature has been branded in our hearts and minds for so long that it is difficult for us to grasp that many cancers are now curable or treatable, even sometimes those that begin with a horrible prognosis. We are shown that the treatment (chemotherapy) is horrendous, and that to face it means to be courageous and strong. The embrace by the medical community and society that surrounds cancer surpasses anything that is experienced by those with other diseases, save perhaps AIDS. From the sense of urgency to the quality of care and the compassion (sometimes pity) it invokes, the cancer experience brought more compassion than expected, and far more than I’ve ever received during any of my care. To have a treatment readily available, as awful as it can be, and to take it for a finite period of time, and in spite of the horrid side effects experienced by some, would be a welcome gift for many patients with ME/CFS.
I am still reeling from the whiplash of the diagnosis, treatment and all that was enveloped in that, and now 8 months later I find us on the other side of it, and everything is over. Like the after-effects of a tornado there is no denying it was ferocious, frightening, dangerous, and unpredictable and likely caused some permanent damage, but so far we’ve survived and will not be required to expend much more energy focused on it. For now it has gone out of our lives in less than a year. Not so for ME/CFS.
My mind has been trained to think in terms of chronicity when it comes to disease. The forever nature of ME/CFS sans ANY real hope for recovery looms always over my life, so to have worked with my Mother to face a lion of a disease like stage IV ovarian cancer with her advanced age and to have come out the other side after less than one year is unbelievable, miraculous, and glorious. I know her cancer can come back, and that the outcome will not likely be so good if it does, but for now this result feels almost like someone just took a dirty eraser and wiped much of the evidence of the cancer away.
Yesterday my daughter, her boyfriend, my husband and I brought lunch and cupcakes to my parents house to celebrate my my Mother’s health, her recent 86th birthday, my Father’s 88th birthday, and their upcoming 67th wedding anniversary. How fortunate we are to still have them in our lives, to hear their stories of the past, learn about their Italian heritage, their survival through the Great Depression, their experiences with small business ownership, and their brave move with two of their three children across the country, while leaving behind their eldest daughter and the remainder of their family and friends. To share these rare moments with three generations is the richest gift one could have.
I’m more grateful for my Mother’s results than I can put into words. I’m thankful that I was well enough to be there for her and my Dad, that for now she didn’t die from a horrendous cancerous decline, that she didn’t suffer too much from the treatments, that she doesn’t have a lot of residual side effects, and that we will have more quality time to spend together, but for myself and the millions of ME/CFS patients worldwide I will have to transform my newfound frustration and resentment into focused energy in my advocacy work. Join me in the Race to Solve ME/CFS.
Claudia Goodell, MS