This posting is a little longer than usual. It is not in my words, but my mother's. And it's not written in her usual sort of voice, because it's a draft of a statement she is preparing to present to a clinical community. She is participating in a program run by the Ovarian Cancer National Alliance in which women who have been diagnosed late tell their stories to third year medical students. The program is called Survivors Teaching Students: Saving Women's Lives, and its goal is to illustrate, in an effort to help remediate, the difficulty of diagnosing ovarian cancer at an early stage.
In this draft, my mother detailed many aspects of her story that I had not previously known, and which shocked me. In the belief that it would be good to spread awareness not only among the medical community but among the rest of us, I am printing excerpts of her draft here.
My diagnosis of ovarian cancer took 10 months.
I saw my primary care physician in June 2005 because when I walked down a flight of stairs to tell my husband something, I needed to stop mid-sentence to take an extra breath. I remember thinking how unusual that was for me. I also had a sense of fullness in my stomach soon after beginning a meal. My doctor followed up with a chest x-ray and many tests for lung and heart things including walking for 6 minutes alongside a nurse, me with a clip on my finger and her carrying the small machine it was attached to and another test – a battery really – of my breathing in and out of a tube with a mouthpiece according to a variety of instructions. He diagnosed asthma, and sent me home with two inhalers, one nasal, one oral, that I never used. The early satiety went away, and the shortness of breath seemed to ease, or I got used to it. He scheduled me for a return visit a month later, at which I reported the symptoms seemed to have disappeared.
The next visit at my doctor’s office was 8 months later, February of 2006, and I went for sometimes moderate, sometimes severe pain in a small, specific spot in the top of my right shoulder. It came whenever I drew a breath, unless I breathed shallowly. It also hurt with firm touch. No kind of movement hurt my shoulder. This was diagnosed as a muscular-skeletal problem, and ibuprofen was recommended. I was told to call if it didn’t go away, but as the pain seemed to wander, or to come and go, I found myself questioning the hard evidence in my own body, and I didn’t want to waste the doctor’s time with a nebulous complaint.
For the next 2 months I slept poorly, having trouble finding a comfortable position and waking in the night with pain. It was either the shoulder pain I just described, or else similar pain in other parts of my chest and back. I remember thinking it might be the mattress, and tried every bed in the house for nights at a time (we live in an empty nest), sometimes changing beds in the middle of the night.
In addition, I was having abdominal pain. I wondered if I had acquired lactose intolerance, and dropped dairy from my diet. At the same time, I wondered if it was the soy milk I had just taken up that was causing the belly aches. Although I had received an “A” on my routine colonoscopy 6 months prior, I made an appointment with my gastro-enterologist to check out this new pain.
Bad Handling of Bad News
That appointment never took place, because diagnosis of cancer came with the results of a Pap test taken at my annual gynecology checkup in March of this year (2 months after the shoulder pain complaint). I mentioned the abdominal pain, and my gynecologist told me to get an ultrasound. The earliest appointment I could get was nearly 2 weeks later. I believe at that time she could tell that I had noticeable ascites but she did not help me get an earlier appointment.
Her office received my Pap test results, adenocarcinoma, on a Thursday. They called me the following Monday to ask if I could come in later that day, 40 minutes prior to my ultrasound appointment, which was at a different location, 30 minutes away. (They knew about the ultrasound appointment, and that I would have just ten minutes with them.)
My own gynecologist was not in that day, and a doctor new to me performed a rapid pelvic exam and then told me she was sorry, but the lab test for the Pap smear found cancer. She said that since it was in the cervix, everything would turn out fine. She offered to see about an appointment with a local gynecological surgery/oncology practice, and called them while I was getting dressed. She had me speak with the appointments person, in the minute I had left, to set up an appointment for the next morning. Because she had me call from the phone in the reception area, my conversation was heard by the office staff and everyone in the waiting room.
The Real Deal
I drove for the ultrasound (“complete transvaginal pelvic ultrasound with color Doppler”) and was able to speak with a doctor immediately after getting dressed. He told me that it was very likely ovarian cancer. Before leaving, I made an appointment for a CAT scan with contrast. They scheduled me for late the next morning. No one told me to do this, and I don’t remember how I knew to do it.
That night at home I did not tell my husband anything. I told myself it would ruin his night’s sleep without having much solid information, and I would know much more the next day. I didn’t realize it, but a huge transformation had happened: I was the container of sad news for the people I loved most, and my very being was the cause of it. This seemed to be at odds with my role as nurturer and matriarch. I also think my decision to delay was a way for me to let in the reality to myself more gradually. I could pretend for a tiny bit more time that our life was still normal. Strangely, I slept like a log.
The following night, after the CAT scan, I told my husband everything (we told our 3 children a few days later), and the next day he phoned someone he knew at Memorial Sloan Kettering. We got an appointment with the chief of the gynecology service for the following week, and surgery with him was scheduled for the week after that.
Surgery confirmed the diagnosis of Stage IIIc ovarian cancer. Two liters of ascites were drained. I had a complete hysterectomy, an omenectomy, and a splenectomy. A 10” section of bowel was removed, my diaphragm was scraped, and, with the accomplishment of “optimal debulking”, my surgery was considered a success. An intra-peritoneal port was installed below my left breast, with its long soaker-hose trailing into my belly.
There is no such thing as getting back to normal. It still doesn’t seem like my body. It looks forever different (6 incisions so far) and feels different. I read it differently, too: a month with shingles might not have happened had it not been for chemo – I’ll never know. Abdominal twinges – are they part of normal digestion, or signs of returning malignancy? Some days I’m sure I’m full of cancer. Then I pull out of it and turn back to the beauty of this life and the loving, messy relationships with family and friends.
Though I’m an optimist at heart, I also know the statistics, that I’ll likely be in treatment again someday and that I’ll likely die of ovarian cancer or complications from it. I’m getting weary of bravely thinking of all this as an exciting body to be living in. I do wholeheartedly embrace the gifts it’s brought – an understanding of the meaning of community (family and friends); the grace of recognizing and shedding the concerns that really don’t matter; and the opportunity to think about dying as a creative and highly individual part of living. But mostly, it’s a matter of simply continuing to live.
Ten grandchildren have been watching how a person does this cancer thing. It rained the night after I had my buzz cut out on the deck at the beginning of chemo, plastering my wet hair into clumps. The visiting grandkids and I went out the next morning and made handlebar mustaches out of the clumps, rolling our upper lips into goofy expressions to hold them in place. Someone had a camera and snapped a picture of the silly side of cancer.