Menopause, the Musical
My Mum was terrible at making decisions. She not only believed she needed to scout the far corners of earth to gather every option for every decision (like every store at the beach for a new bathing suit), she asked endless questions (like asking the barista at Starbucks what the blueberry muffin was ‘like’) and waffled even after the decision (can I change my order a third time?).
However, 15 years ago when we stepped in front of the TKS half price ticket booth window in Union Square, she knew exactly what show she wanted to see. After carefully reading through the first 5 or 6 options, all of which underwhelmed her. Even the traveling Broadway show of the moment was of no interest. Perpetually hard to please, her forehead furled deeper until a huge smile landed on her face “Menopause the Musical”, she declared with joyful finality. Her blue gray ocean eyes looked at me expectedly. “Really?? Are you sure? How about x, y or z. we could always go to dinner instead if nothing looks good,” I pleaded. Mum made her interest clear and clapped like a child when I bought the tickets.
A few hours later, we drove to Fisherman’s Wharf in the only fancy car I’ve ever owned. Although she had trouble getting in and out of the bucket seats and wouldn’t let me put the top down because it would mess up her perfectly coiffed hair, she remarked the entire ride about the shiny car, proud as only moms can be of my success in the big city.
The theatre was full of menopausal women who all looked decades older than my gorgeous small boned, fully made-up Mum. Alongside these women were reluctant husbands looking around the theatre absently. We all received fans with Menopause the Musical logos upon entrance. The theatre wasn’t particularly hot…but the fans were for hot flashes and the humor of menopause. Although I don’t remember a single joke, I remember her full faced cackles, watching my mum howl and slap her knee and catch her breath only to explode in laughter again. The car conversation on the drive home was replaced by reliving the show and the jokes. Mum often said ‘you’ll understand one day’. I’d love to hear the laugh again and share how much more I understand now.
Menopause, and female hormones in general — getting them, living with their cycles and changes with pregnancy and then losing them are heavy business. Menopause typically occurs over a 5-year window causing sever hot flashes, night sweats, mood swings, irritability, dryness, sexual changes and other fun treats. Imagine compressing those 5 years into a single day. That my friends, is hormone treatment for hormone positive breast cancer.
My first bout of menopause happened with chemotherapy. That is called “medically induced menopause’ and the majority of women experience it. Women over 40 typically stay in menopause but you can’t count on that because the ovaries can start up again without warning. I have had all the classic symptoms often in movie style exaggerated fashion. I’m sitting with friends somewhere having a conversation and suddenly, I have to strip off everything possible and fan myself because it’s unbearable hot. They turn on the overhead fan, open all the windows. 2 minutes later I’m freezing. Eventually the night sweats ended and I could make it through the night in only 1 set of PJs. Keep in mind, these side effects, like all are really origin unknown. Is chemo causing it? Is menopause causing it? The doctors don’t know and it never matters because the end result is the same no matter what causes it. A month ago the hot flashes gave way to longer ‘hot sessions’ that lasted 20 minutes or so and did not require a costume change. My mood has also soured significantly for the first time in my life. But I also have cancer and am undergoing crazy treatment so I’m not sure we can blame mood shifts on any single culprit.
My second bout of menopause began last Wednesday...this one will last forever. While healthy women reach zero estrogen over a span of 5 years in their mature years, hormone positive breast cancer patients achieve it in one day often in their prime.
Like 80% of breast cancer, I am ER+ (estrogen positive) and, like 65%, I’m PR+ (progesterone positive). That means my cancer thrives on ER and PR hormones. To help prevent recurrence, we need to starve my cells of those hormones. Just like chemo sacrifices healthy cells with the cancer cells, starving my body of hormones strips all their protection and positive work away. Estrogen protects and strengthens your bones and joints. The absence of estrogen in older woman cause brittle bones, broken hips and arthritis. Thin white women are the highest risk group. Bad news for me. Temperature control, mood, mental stability, sleep, heart protection and more are influenced by estrogen. More like a controlled substance, Estrogen is no joke. Pregnancy and breastfeeding flood the body with estrogen making women particularly susceptible to breast cancer during that period. Post breastfeeding, the body has more protection but during that estrogen flood, cancer, like mine, can thrive with unbridled hormone access.
Protocols vary but mine hormone treatment is scheduled for 10 years. Yes, TEN years. First there is ovary suppression or ablation. That involves a MASSIVE 16 gauge needle containing a pellet of goserelin (Zoladex) that is implanted subcutaneously near either ovary. I thought needle gauges were only used in piercing. Needless to say, it was NOT a fun procedure, exasperated by the nurse warning me that the needle was huge and she thinks it hurts a lot and she has never given it before. The charge nurse gave it to me and then said it hurt me more because I didn’t have a lot of tissue there. This is currently scheduled every 3 weeks when I go in for immunotherapy (chemotherapy).
My oncologist recommended awhile ago that I consider having my ovaries surgically removed and I met with the DRs. I wanted to see what the shot was like since I could stop if if anything drastic happened (like breaking a lot of bones). That would be a fun choice to make — do I continue fracturing brittle bones with ovary suppression or let hormones feed my body and possibly dormant cancer cells again? Cancer takes the teenage drinking game “WOuld you rather….” to a disgusting level. So, I’m scheduling the surgery — comically called an oophorectomy. They will remove the ovaries and tubes because ovarian cancer often starts in the tubes. I’m opting to keep my uterus. I’m feeling more Frankenstein-ian as time passes. I had hoped to coordinate my next breast surgery (6 months) with the oophorectomy but the plastic surgeon thinks its too risky so I’m looking to lost the ovaries in December. The surgery is not a big deal but it is a 6 week recovery where I can’t lift anything heavy (kids) or exercise, which is tough for me.
Estrogen is produced in body tissue too- not just the ovaries. Part two of hormone treatment is called an Aromatase Inhibitor (AI) which sounds like a cool cocktail but is actually a daily pill with warning of dizziness and heavy machinery operation on the bottle. I will take that for 10 years. Vita stole my AI pill- Letrozole from my plate the other day and chomped it like a tic-tac because she ‘likes lellow’. Can any child actually say Yellow? Lellow is the cutest word. She survived just fine but when Mark was looking it up online I had the misfortune to read some of the side effects in more details — bone fracture 22% of patients. Fuck.
Monitoring of side effects include regular bone density scans. My first scan a month ago showed Osteopenia…decreased bone density that is not to the extent of osteoporosis. Sweet, I’m 43 extremely active and have only begun menopause and I’m already showing compromise in my bones. This is one of the lesser known facts of cancer. The treatment causes a lot of problems….not death like cancer does…but a lot of major challenges to lifestyle and quality.
I got the first one on Wednesday when I started all the other drugs. Many healthy women decline to take drugs for osteoporosis because the side effects can be severe rendering holes in jaws. I am not allowed to get any serious dental work.
Wednesday I came home exhausted from chemo and all the new drugs, two follow up tests, labs, and meeting my oncologist. I went to bed after a quick supper and woke up achy and tired. I barely made it through yoga the next day, full of anger and frustration that body barely moved and hurt everywhere. By Thursday afternoon I had the chills and a temperature of 102. I paged my oncologist and learned that yes, Zometa can cause flu like symptoms and they should resolve in 3 days. I would have been nice to know that before so I didn’t immediately enter full fight or flight panic reliving AC. Laying on the couch while the family ate dinner and I called the triage line I was whisked back into the early dark days of the red devil and I was terrified.
The top complaint of other young survivors on these drugs is joints pain. On Wednesday my body aged from 43 to 70. My joints already cycled through a few bad months from post-chemo arthritis but are doing pretty well now. I even went back at Orange Theory this week, which feels like a big win.
The new normal of life without hormones has begun. I hope my moods will stabilize as my patience is pretty thin now (poor Mark bears the brunt). I can make it through the day but my fatigue kicks in high gear at 8 pm. Having your womanhood stripped away bit by bit physically, emotional, and mentally is very challenging and overwhelming. Waiting to see what side effects will affect me and when is sometimes too much. In classic Dana style, a busy full life helps me cope.
I’m very lucky that Mark has been in town for awhile and that his parents are moving to town in a few weeks! Good things are on the horizon and we will be in SF in less than a week. I can’t wait to celebrate the victories thus far and get on an airplane again. I made it through “Active Treatment” — chemo (the heavy stuff is done), the biggest surgery and radiation. That is a HUGE milestone that deserves celebrating!