My husband might say that I don’t believe in luck. That’s not necessarily true. I just don’t expect it. Maybe that’s the reason I worry and he doesn’t. He accepts good things with a smile and a wink, where I am more of an obsessive tally keeper. There is a Swedish saying, that luck only lends and never gives, and by my calculations, we are gathering debt we can never repay.
That might be why I prefer the handouts in my life to be modest. We’ve never won the lottery; never experienced a huge promotion. We’ve certainly had our share of obstacles but they’ve never been more than we could handle. Some call it luck, some call it divine intervention; either way I am grateful. I have a beautiful family, a lovely home and we’ve always had our health.
Being a waitress is hard on your body. During the Christmas season it gets a lot harder. Eventually the pain in my back got to the point where it ceased to be the cost of the job and turned into something more.
First I was diagnosed with a bladder infection and work related back strain. A few weeks later, it was a kidney infection. Two rounds of unsuccessful antibiotics later, they ordered an ultrasound. The doctor called me in to discuss two large masses on my ovaries. When people use words like masses and tumours your first thoughts begin with “C”. The doctor reassured me that my problem was more inconvenient than scary. They were a symptom of endometriosis; a condition resulting from the appearance of endometrial tissue outside the uterus that results in pelvic pain.
I was lucky.
The doctor continued to describe a disease that is defined with painful periods and infertility. I was blessed with three beautiful children and while it was no picnic, I had never missed work due to menstrual pain. Not only had I avoided the worst-case disease I had imagined, I had avoided the worst-case scenario of the disease that I had.
I was very lucky.
My back pain progressed from November until I felt I had to face it in January. By February I was diagnosed and by March I was off to a specialist that had me booked for surgery in May. Initial reading indicated that many women suffer for years, misdiagnosed or ignored until they finally convince a doctor to perform exploratory surgery that confirms that their insides had been slowly building up scar tissue undetectable on an ultrasound. Thanks to the way the disease decided to accumulate in my body, (as large, visible endometriomas) I was diagnosed and scheduled for surgery in only 3 months.
I was blessed.
Surgery day was nerve wracking but everything went smoothly. They had to remove one of my ovaries due to damage from the tumours but I awoke without too much pain and returned home to be spoiled. Family members stayed to help for the first few days while I recovered. Church members delivered food to help me while I was off my feet. I recuperated quickly and started back to work and even exercising gingerly. I was back to normal within six weeks.
I felt very blessed.
Everything was fine for three weeks. Then the back pain started to creep back. I figured I was over doing my exercises to make up for my limited physical activity for the last 6 months. I stopped exercising. The pain persisted. I worried that I had rushed my recovery and started back on pain medication. After a few more weeks of no relief, I returned to the doctor and was told endometriosis can be tricky. As long as my body was creating estrogen unmonitored, I was at risk of triggering it. The doctor was confident that with birth control regulating my hormones, the symptoms could be managed. I was scheduled for a follow up in three months to give the medicine time to work.
Three months later with no relief in sight, the doctor suggested Visanne, a medicine especially designed for endometriosis. It was expensive, but not only would it stop my body from growing the painful lesions, it would break down any lesions that might have started in the last few months. With an added prescription of Tylenol 3’s, I booked my follow up for three months later.
The back pain got worse. The doctor was worried that the continued use of Tylenol 3 would be hard on my system and decided to switch me to a daily monitored dose of slow release morphine. The gold standard for endometriosis treatment was Lupron. A drug originally used for men with prostate cancer, it showed significant promise of treating the endometriosis but there was a hard adjustment period and a risk of severe side effects. My life was slowly sliding off the rails. Between my job and parenting, I didn’t have the luxury of any more time outs. Clinical trials showed less than 5% of patients experienced consistent severe negative responses so I started the treatment and began daily regulated pain relief.
My body did not react well. Joint pain, headaches, nausea and depression made each day a blur. Long after my system was supposed to be adjusted, I struggled. After a month, the doctor tried adding back small amounts of estrogen. Not enough to trigger the disease but enough to soothe the adverse reactions. The side effects did lessen in their severity but the back pain and pelvic tenderness remained untouched. Two months later an ultrasound proved that although the doctor had felt it unlikely in such a short period of time, and despite spending the last 6 months taking medicine meant not only to still the disease but to shrink it, Endometriosis had, in fact, persevered. I had another mass on my remaining ovary. I would need more surgery.
The timelines would have put me off my feet and recovering right as my kids were finishing school for the year, ready for adventure. With regular check ups and inching up the dosage of the pain meds, I survived the summer and then pushed through fall. Unable to get time off of work during the busy holiday season, I lasted until February before the doctors rushed me in for emergency surgery. This time, to increase my odds, surgeons removed not only the lesions but my uterus and fallopian tubes. I was lucky and the doctors were able to save my remaining ovary so that by body would not have to endure the risks involved with surgical menopause. I awoke in terrible pain. This recovery was harder. I had now been on morphine long enough for my body to build up enough of a tolerance that I couldn’t balance pain relief without upsetting my stomach. I felt guilty asking anyone to help when I had already called in so many favours only a year and a half earlier. I was intent on weening myself off of almost a year of daily morphine and to use only Tylenol to help with recovery pain. On top of everything, the withdrawal symptoms were overwhelming. Long after my original recovery time, I was still in pain and after 3 months, I crawled back to my doctor terrified that the surgery had failed. My doctor explained not to rush things. Removing a uterus was a complicated procedure and Endometriosis had completely fused mine to my spine making a 2 hour surgery closer to 5 hours. I returned home determined to give my body the time it needed to heal.
After 2 more months of no relief, an MRI confirmed what my body had been telling me. As my kids got ready for another summer of fun and games, another tumour was discovered inside my remaining ovary.
I am lucky that my disease will not kill me. The Cancer Society predicted that close to 200 000 Canadians would be diagnosed with cancer in 2015. Over 75 000 of them will lose their fight. I am blessed that I do not have to lie awake at night and worry that I will not have the chance to watch my children grow.
Endometriosis is found in up to 50% of women who battle with infertility and in moderate to severe cases, women have less than a 2% monthly chance of conceiving. I am lucky I do not have to lie awake at night and worry that I will not have the chance to have children and watch them grow.
I am so blessed. I repeat that like a mantra.
I have learned over the last few years to choose my activities. I can clean the house, or I can work a shift, or I can play with my kids but I can only choose one. If I try to do too much, I can lose the entire subsequent day for my stupidity. Obviously, cleaning, gardening and chores fall low on the priority list when they are trying to compete with playing with the kids or earning a living. I try not to get discouraged in the chaos of all the necessary daily tasks that get deprioritized or feel shame or guilt over all the markers I’m missing.
I’m sure people wonder why I’ve stopped attending social events. It’s not easy to explain without sounding like I am complaining. I’m not going to tell someone, “well I couldn’t come out for dinner because I shovelled the driveway yesterday so I could get to work and so today I’m spending in bed.” Or “I took the kids for a hike and then did a grocery shop, so I’m done for the day.” Slowly I’ve been withdrawing. Conversations are tricky. Most of them start with a lie. “How are you?” An innocent question, but such a struggle for anyone in chronic pain. But I lie. Happily in fact. Trust me, I don’t want to dwell on it any more than the next person, but as my illness drags on, it gains size. Between treating and managing, and managing the treatments, Endometriosis is the largest part of my story and it keeps making my world smaller . “What did you do today?” causes anxiety and shame. “Well, nothing, because I have to work tonight so I don’t want to risk anything that will put me in more pain.” These are not the things people want to hear. I don’t want to hear it and I live with it. So I close myself in, and push people away until I can remember how lucky I am.
I do not have a fatal disease. I do have three beautiful children who are miracles and remind me every day that I am blessed. I am faced with the decision of getting yet another surgery. To fall asleep on the table and wake up with one less internal organ. There is a chance that by removing my remaining ovary I will stop this disease in its tracks. There is also a chance that small amounts will be left deep in my tissue with the possibility of growing and spreading if fed with estrogen. Eliminating estrogen however, increases my chances of Osteoporosis and Cardiovascular disease, but even if I’m lucky enough to avoid the serious side effects, I still have to navigate the mood swings, hot flashes and, I kid you not, literature that includes words like vaginal atrophy. On the bright side, trying to completely eliminate estrogen in my body is next to impossible. Synthesized estrogen is found in our cosmetics, in our homes and accumulating in our water from the plastic we are drinking it from. Natural estrogen is in our food; our dairy, our vegetables and our fruit and in the herbicides used to protect them.
So I sit here and weigh my options. I make lists and probability charts. The drugs make me feel depressed. The disease makes me feel pain. The chaos makes me feel shame. The distractions make me feel guilt. I remind myself that luck only lends and never gives and I guess I have to ask myself….do I feel lucky?
“I don’t feel very much like Pooh today,” said Pooh.
“There there,” said Piglet. “I’ll bring you tea and honey until you do.”
― A.A. Milne, Winnie-the-Pooh