Remember all the times I said, “I’ve had cancer my whole life?” Well it’s true… and things haven’t changed. The actual cancers may be gone, but unfortunately, the life of a cancer survivor is riddled with risk potential, endless doctors appointments, screenings and medical procedures.
And fear… can’t forget fear.
Why is that? Quite simply, because successful cancer treatment does not come without short- and long-term side effects.
For many childhood cancer survivors, dealing with the side effects of treatment is really no different than brushing your teeth or taking a shower… you just do it. You don’t really think about it.
After all, we’ve been conditioned to save our own lives.
When I was 16 and diagnosed with Hodgkin’s Disease, a type of lymphoma, I was assured that my cancer was roughly 80% curable and I’d be in remission within six months. I was also told that after 10 years of clear screenings, I could consider myself officially in the clear from a Hodgkin’s Disease relapse.
However, it was made crystal clear that I’d be at risk for other complications and cancers as a result of the chemotherapy and radiation that cured the Hodgkin’s Disease.
It doesn’t matter how clear and constant the warnings were… I was still shocked as hell when I was told I had cancer again, nearly 20 years later.
And the only reason I developed breast cancer in 2015 is because the chemo and radiation I had 18 years ago elevated my breast cancer risk by 30-40%.
Even cooler, after I had a bilateral mastectomy, which was supposed to “cure” me of any future cancer risk, the pathology concluded my breast cancer was actually an invasive cancer, and the risk for developing a third cancer was thrown right back in my face. Those tiny, microscopic breast cancer particles that broke through the milk duct, invaded the surrounding breast tissue and swam into my blood stream are now floating around my body, scavenging for food, looking for somewhere to quietly settle down and build an empire.
This time, I was told if my breast cancer ever comes back (metastasizes), it will be too late to successfully treat it… stage 4 metastatic incurable breast cancer, likely taking up residence in a vital organ like my brain, liver or lungs… all thanks to “life-saving” chemo and radiation.
However, I was also assured not to worry about getting cancer a third time, because there’s an effective hormone therapy for women still in their child-bearing years, called Tamoxifen, that if taken for at least 5-10 years consecutively can reduce the risk of cancer recurrence to 5-6%. If I don’t take Tamoxifen, the risk of cancer recurrence increases to something like 15-20% (these numbers are specific to my tumor and are speculative).
So, what does Tamoxifen do… Tamoxifen is an estrogen blocker, which means it doesn’t allow estrogen to bind to cells that need it to live. It’s effective at reducing the risk of a cancer recurrence if the previous cancer was the type that needed estrogen in order to grow and multiply, which mine was.
In short, Tamoxifen will starve the microscopic cancer cells floating around my body so they can’t grow into something life-threatening in a vital organ.
But as as you can imagine, when a woman purposely fucks with her hormones by throwing Tamoxifen into the mix, she confuses the shit out of her body.
When I started taking Tamoxifen, I was aware of the most common side effects, but I purposely avoided getting sucked into the Internet’s black hole of forums and misleading information. I didn’t research anything about side effects. I didn’t want to be jaded by anyone else’s experience, because I’ve always — for the most part — tolerated medications very well.
What I did know was, because Tamoxifen blocks estrogen, it tricks your body into thinking you’re menopausal. Many people believe a falsehood that Tamoxifen actually causes menopause… perhaps if you’re in your mid-40s/50s and on the cusp of going through menopause naturally, it can push you over the edge. But right now, my body is just mimicking symptoms of menopause…
These are actually ridiculous. Chemotherapy messes with your hormones too, so I’d experienced hot flashes as a teen and knew what to expect this time around. A hilarious older woman I worked with while in college once empathized with me, very accurately describing hot flashes as “terrible orgasms…” you feel this intense build-up deep inside your chest, this incredible furnace that just gets hotter and hotter, in the core of your body, and it’s jolting… you almost panic, because you can’t imagine it’s possible to get any fucking hotter, but it does. You start to desperately peel at your clothes as you burn up and when the fever breaks, the flood gates open and a deluge of sweat covers you. Your head sweats, your eyebrows and upper lip sweat, your entire torso drips with sweat and you pant like you just ran a mile.
And five minutes later, you’re freezing your ass off because you’re soaked from head to toe and it’s wintertime and you’ve just stripped down to a tank top in 30 degree weather.
It’s especially amazing when this happens in public… #HotMess
This goes on unexpectedly, all day, and all night. And it’s so fucking annoying.
What a strange and annoying phenomenon. Lots of people experience insomnia, and I might be wrong, but I’m pretty sure most insomnia is caused by stress. I have to be honest… despite the seemingly depressing tone of this blog post, my life isn’t all that stressful these days. I don’t obsessively worry about things as much as I used to (at least not until Trump became president). But still, I lie in bed with my eyes wide open, tossing and turning, trying anything and everything to fall asleep, to no avail.
Dragging ass syndrome…
When no matter how many naps you take to combat the insomnia, no matter how well you eat or how much you work out, you still have ZERO. ENERGY. This wasn’t always the case, in fact, in the earlier part of 2016 I felt invigorated. Now, I mainline caffeine to stay focused and generally walk around feeling like a zombie with baby brain. The simplest activities exhaust me, I have no idea how I have so much trouble falling asleep…
It’s been 15 months since I started taking Tamoxifen. Clearly, I had a pretty bangin’ 2016, so Tamoxifen didn’t initially slow me down all that much. But my body was still getting used to it. And only three months into starting my treatment, my doctor found little abnormal growths, called polyps, in my uterus.
This was the first real “what the fuck” moment I had… at the time, I didn’t realize Tamoxifen could cause uterine polyps… in fact, I was told that the risk for developing a uterine cancer while taking Tamoxifen was only 1%. A biopsy, while excruciating, came back benign, as expected, and my doctor told me to let her know if I started having any “funny symptoms…”
Well what the fuck does that mean, doctor?
Generally, painful cramping, heavy menstrual bleeding or any bothersome irregular bleeding outside of my normal monthly period.
Almost a year to the day after starting Tamoxifen, I started bleeding Every.Single.Day.
This isn’t just annoying… it’s not just painful… it’s disruptive. I’ve ruined half the clothes in my closet. And let’s be clear, dating is difficult enough in this twisted, technology-obsessed world… I don’t need another embarrassing excuse as to why I can’t get busy at 35-years-old.
So it was time to take care of it… my doctor ordered an ultrasound of my uterus, which revealed one of the polyps had in fact become quite large. My doctor speculated that my body was trying to naturally abort the polyp, which would explain the bleeding… how about that… the female body is a force to be reckoned with.
So last week, my doctor performed a D&C (dilation and curettage) to remove the polyps. It’s a good thing she did, because when she went in, she found more. Luckily, it was a same-day procedure, didn’t require any incisions and I’m free of pain and no longer bleeding every day.
But of course, my first question was, is this going to happen, like, all the time while I’m taking Tamoxifen?
The doctor said, maybe, maybe not… I’m going to guess… probably.
What a huge pain in the ass.
I’m super annoyed. But at the same time, I can’t deny my symptoms are manageable… shouldn’t I be grateful? Or should I be worried that more is in store for me?
And so I did the thing i promised myself I wouldn’t do… I researched.
And I’m going to be the hypocrite who jades you by sharing what I learned.
I polled women in my favorite breast cancer forum on Facebook, Beyond the Pink Moon, as well as close friends who are badass breast cancer survivors. I asked everyone what they thought about Tamoxifen… and what I learned blew my fucking mind.
- “I had to stop taking Tamoxifen because it caused endometriosis.”
- “Recently stopped due to it (apparently) wreaking havoc on my previously beautiful cholesterol numbers…”
- “The hot flashes were bad and frequent, my joints aching, my hands and feet cramping, the 10 lbs. weight gain which made me feel very sluggish. I felt like I was carrying around a big ball and chain of weight all the time. The fatigue was overwhelming.”
- “Made my triglycerides and cholesterol skyrocket. Triglycerides were in the 900s! After going off Tamoxifen for a month, they were back in normal range. I’m back on Tamoxifen and being closely monitored; once they start getting super high, I get to add statins to my list.”
- “I took it for five years as recommended. It completely destroyed my joints. I have arthritis throughout. It also ravaged my ovaries and uterus and I ended up having a full hysterectomy because too many questionable things started growing.”
- “I was on it 16 months and it caused auto immune rheumatoid arthritis, mass bone pain, hot flashes and mood swings.
- “Was on it for about three months with just hot flashes, except blood work shows my lipid profile has gone nuts…”
- “Hot flashes and depression – big time. I have not been able to rise above the sadness and it’s been three years. I feel like it has slowly changed my personality from extrovert to reflective introvert.”
Of the 20 women who responded, half said they have opted not to take Tamoxifen, against their doctors’ recommendations, and would rather “roll the dice” than deal with side effects.
So I could have let this information scare the shit out of me. I admit it was discouraging. But instead I choose to see the lesson… things can ALWAYS be worse. I should be grateful that I’m faring well, all things considered. I’m grateful the universe guided me toward a career in the healthcare field, where I’ve learned to appreciate and understand science-based facts. And science shows that more women survive cancer-free when they take Tamoxifen.
But the truth is, part of me wishes I had the guts to defy science, toss the Tamoxifen aside and take my chances.
Well… I don’t have the guts… cancer is too sneaky… and I don’t ever want to hear the words, “you have cancer again,” again.
So I’ll take my chances with Tamoxifen and pray the effects remain just a nuisance and not something worse.
Instead, I will choose to be grateful that I’m here another day, enjoying success that came from years of hard work and luxuries others are not as fortunate to have. I’ll continue to remind myself that blessings sometimes come in disguise and that the universe has me on a path I’m meant to be on, challenges and all.
Most of all, I’ll remember how precious life is and how important it is to show others compassion… I choose to blog about my experiences and share the good, the bad, the shocking and even the embarrassing stuff with the world in hopes that my message might reach someone, somewhere, who really needs it. But my way is not for everyone… there are so many people fighting silent battles and suffering from the residual fear, anxiety, depression and isolation… be careful what you say and how you treat others. Love always wins.
This post is dedicated to my dear friend, Yelica Sare, who knew all too well the same exact struggles I face and who passed away suddenly last week, just two days after my procedure. Yelica and I met after I spoke at a Rodan + Fields event last year, just days after I’d started taking Tamoxifen. We bonded instantly, because like me, Yelica survived Hodgkin’s Disease as a teenager. Her Hodgkin’s treatment also caused her to develop breast cancer, which she successful beat.
After all of that fight, she was still taken too soon.
Yelica was a bright light who always lifted me up and gave me hope for my future. I’m shocked and heartbroken that she’s gone. But at the same time, I pray that she’s found peace… her life, like mine, was not easy.
You can click here to donate to Yelica’s family. Funds will be used to cover funeral expenses and college education for her two children.
Rest easy, beautiful girl ❤