Today I am marching more than walking. My walk flew by this morning. Lost in thought, I barely noticed my surroundings. My usual calm contemplations were replaced with unrest. I am thinking about recent developments in the world of women’s health and I am feeling much like a second class citizen.
Today I am thinking about intimacy and reproductive health after cancer. It is an uncomfortable topic for me to discuss with the world. Being a private person, I cringe at the thought of openly discussing such a personal issue. The issue of post cancer intimacy is commonly encountered but rarely talked about. In hopes that being open about my experience will help normalize these discussions, I will step outside of my comfort zone and dive in.
The need for physical connection is strong for everyone but can be extreme when recovering from cancer or serious illness. The path of a fighter is a lonely one. Sometimes sharing a physical or emotional connection with another person can be a lifeline in a stormy sea of pain and despair.
Those who fight their cancer battles during their reproductive years have the extra challenge of having to manage their fertility. Their bodies change. Fertility and the ability to use birth control is no longer guaranteed. This can be a great loss. When going through major surgery, chemotherapy, or radiation many young cancer patients must face the fact that these therapies will affect their ability to have children. Having a family is important to many survivors. Sometimes young women and men must make the expensive decision to bank sperm or eggs or heartachingly forego personal reproduction entirely.
Having children is not for everyone. I decided immediately upon my diagnosis that I would never risk passing on my unidentified genetic mutation to a child. Prevention of future pregnancy became high on my list of priorities. My husband and I decided many years prior that children did not fit into our lifestyle. We always opted for highly effective long term forms of birth control such as IUDs.
My reliance on birth control was almost life long. Taught the value of reproductive freedom at an early age, I started my first estrogen pills in my early teens. I made solo journeys to Planned Parenthood in the afternoons after high school for pelvic exams and birth control prescriptions. In my twenties, I switched to progesterone shots. Once in a stable relationship, I switched to long term IUDs in my thirties.
My switch to IUDs was by necessity. During the intense stress of my first year of pulmonary critical care fellowship, I developed stroke-mimicking migraines. My neurologist stated matter-of-factly that estrogen increased the risk of stroke in women with my type of migraines. Estrogen birth control was no longer an option for me.
Within days I was off hormones and on to the hormone-free paraguard IUD. I unfortunately failed it immediately. After several weeks of pelvic pain that at times brought me to my knees, my gynecologist discovered that my uterus was too small for the paraguard. The spasmodic pain was my uterus attempting to expel the device.
After a series of discussions between myself, my gynecologist, and my neurologist we decided that the benefit outweighed the risk of placement of one of the smaller hormone secreting IUDs. Eight years later I was diagnosed with estrogen and progesterone receptor positive breast cancer. I learned that the hormones in my IUD were likely feeding the growth of my cancer.
Within three days of my diagnosis my IUD was removed. For the first time in my adult life I was off birth control and vulnerable to pregnancy. For the next several months being without birth control was a moot point. The intense stress and pain of my double mastectomy caused my body to stop ovulating. My periods stopped entirely. It was more than three months before my body recovered enough to start cycling again.
After my surgery and during the months of reconstruction I was in constant pain. The mastectomy removed my breasts entirely leaving me flat chested and with limited use of my arms. Next after a month of painful recovery I started the expansion process. The pain worsened again as my muscles and skin stretched to create the pocket for future silicone breast implants. Each week I adjusted to a new breast size. I struggled to accept my new body. I was weak, easily fatigued, in constant discomfort, and had limited range of motion of my arms.
I became shy and uncomfortable with my body. For practical reasons I wore baggy shirts which hid my changing breasts entirely. In the evenings I stared at myself in the mirror, examining every scar and what was left of my breasts. For a lifetime I had been confident of my body. With cancer that confidence evaporated and was replaced with self consciousness. I found myself hiding my body from my husband, embarrassed of the scars.
I became terrified of getting pregnant, never wanting to risk passing my genetics to a child. My child would not only be at a higher risk of cancer, but would start breast cancer screening ten years before the age of my diagnosis…28 years old. No 28 year old deserves such a life. I could not bear the thought of my child suffering as I had.
Knowing I was in no physical condition to have yet another surgery to get my “tubes tied”, I demanded my husband get a vasectomy. He refused and this led to a series of fights after which we ultimately came to an impasse. Between my physical limitations, constant pain, fear of getting pregnant, and body image issues, physical intimacy was not physically or emotionally possible for me.
This, in addition to many other cancer stressors, put a tremendous strain on my marriage At a time when we both desperately needed each other’s support, it pushed us apart. We each withdrew into ourselves and the physical spark between us fizzled.
