we met with my oncologist in early may, and the information has taken a month to sink it. i pushed her for statistics, a timeline, something tangible to hold on to as i transition into new treatments. she didn’t dance around it, nor did she apologize. she looked me straight in the eye. 15 years. after 15 years of being disease free, that’s when the other c-word–cure–can creep into our vocabulary. the next few years are critical for a local reoccurrence or distant metastasis. but then so are the years afterwards.
she said if i continue to be aggressive, make the necessary lifestyle modifications, and start the recommended next steps of hormone therapies, my chance of living disease free could be as high as 85%.
why doesn’t that number bring me comfort? well, my chance of getting breast cancer in my 30s was 0.4%, meaning i had a greater than 99% chance of being cancer-free before age 40. forgive me, but numbers don’t mean shit to me anymore. and when something incredibly rare happens, i start to feel like i’m prone to rarities, a bad hand, double snake eyes in the board game Parcheesi.
i did appreciate my doctor’s straight, un-sugarcoated shot across the bow at us. it made the next piece of news she delivered logical.
for the next 2-3 years, we need to shut down my ovaries to eliminate estrogen in my body. this is in the form of monthly zolodex shots in the stomach at the chemo/infusion center. zolodex is on top of the 5-10 years of tamoxifen i’ll take. tamoxifen is a daily pill and very old drug that keeps estrogen from binding with any remaining cancer cells above the belt and feeding them. estrogen is like a bad habit for my cancer – can live with it, can’t live without it. or something like that.
so what does this all mean? menopause…again. whomp waaaaaaa. i got hurled at 60mph into temporary menopause during chemo, only resurfacing in february when my ovaries started to wake up and remember that i am, in fact, a girl. when i think about starting these shots, a bad image of the big-haired arena rock band whitesnake pops into my head, singing “here i go again on my own.” only, it’s not the only road i’ve ever known. i liked the other estrogen-rich road better frankly. but unfortunately so did my cancer.
my doctor wanted me to start all of this on may 29, the day after i ended radiation. however, i’ve been dragging my feet in scheduling the monthly shots and starting tamoxifen for 3 reasons. the first is that i’m tired (still, no change from my last journal entry;-) and need a break. even a few days to have space to think about, dream about, wonder what it’s like to feel normal. all you normal feeling people out there, take it in!
the second is the side effects. the ones i had during chemo will likely be present for the next 2-3 years when my ovaries are suspended. while they might smooth out after 5 months or so, most women experience the side effects the whole time on the drugs. such pleasantries like roaring hot flashes, joint pain, emotional roller coasting, insomnia, weight gain including the famous ‘tamoxifat’ ring around the stomach, libido loss, and vaginal dryness. i know you’re thinking, holycrapican’tbelieveshejusttalkedaboutvaginaldrynessinpublic. deal with it. because i’m going to have to.
other more long-term side effects exist, like bone density loss, heart disease, and cholesterol issues, given that estrogen plays a role in all of those things. we’ll monitor everything with continued bone scans, echos and bloodwork. my doctor thinks those bigger side effects will mostly reverse themselves after i’m off zolodex in 2-3 years.
the last is that logistically, i’m tethered to UCSF every 26-30 days. sounds gradeschoolish given the trade-off is my life and whatnot. but for real. i just can’t commit to that. i want to be out in the worldinstead. if i miss that window, my ovaries start to wake up again. cue enhanced side effects and a loss of all that work my body was doing to smooth things out, as well as decreased effectiveness of the treatment.
there are many tools in the toolbox to manage side effects. exercise, acupuncture, vitamin e, e-string, antidepressants, medical marijuana, wearing cotton clothing and sheets to bed, avoiding spicy foods/alcohol/heat/stress, and one super practical yet highly undoable tip to always carry a cooler stocked with ice-cold water. i can incorporate as many of those recommendations as possible. but they require more drugs and more work and more energy. and ultimately on many of the suggestions: where is the balance on quality of life? do i give up salsa and indian food, lock myself up high on a mountaintop in the arctic because of my hot flashes? as an aside, my nighttime hot flashes during chemo were so bad, they woke mike up before i even budged. perhaps he’s secretly supportive of my mountaintop plan.
while i’m planning what to do for my radiobration (chemobration, mastectamoon, radiobration – thank you sarah), i’m staring down the difficulties to come. it’s hard to hold both at the same time.
so, i got my act together and scheduled my shot for this thursday, june 6. i filled up my pill boxes with tamoxifen to start that day too. i don’t know where i’m going, but i sure know where i’ve been…i’ve made up my mind, i ain’t wasting no more time. ok ok, enough whitesnake lyrics for one post. i’m ripping off the band-aid all at once. choosing life, albeit one i didn’t exactly choose. but you get my drift.
i’ll keep you posted about how this next phase of hormone therapy goes. i see my radiation oncologist tomorrow to check in on my burn (aka armpit that looks like raw meat situation), get an ol’ pelvic ultrasound for a baseline of what’s happening before hormone therapy, and continue the chemo infusion/targeted therapy i’m on every 3 weeks through november. e. gads.
in the meantime, enjoy this pic of a david bowie mural in my neighborhood. i see it every time i walk to acupuncture. it doesn’t realllly connect to this post but i like to think about what bowie managed to fit into 2-3 years, 5 years, 15 years. off we go.