Looks Are Deceiving Now That I’m Living My New Normal

My boyfriend proposed to me in September 2017, a couple of weeks after my last chemotherapy treatment and before my double mastectomy.

From the outside, everything seems to be back to normal. My brown hair with natural streaks of blonde has grown back, returning to its pre-chemo length and thickness. The scars on my neck and right clavicle area from the port placement have faded. So have the scars on my hips where some fat was removed to reconstruct my breasts. My double mastectomy incision is hidden from plain sight, tucked under my implants. My chest area has returned to its pre-mastectomy definition, my nipples spared.

So, to everyone besides my close family and friends, I am completely healed, even cured. “You look so good!” they say, unknowingly insinuating that I looked bad during my treatment. “You look so healthy!” they say, without a clue as to what I continue to deal with on a daily basis.

March 2020 marked three years since I was diagnosed with ER+ stage IIB breast cancer at age 27. The weeks of fertility treatments, port placement surgery, four months of chemotherapy, double mastectomy, 25 rounds of radiation, and reconstruction are all behind me and starting to become somewhat of a distant memory.

What those outside of my inner circle don’t see are the invisible post-breast cancer scars. Yes, my major treatments and procedures are over. But that doesn’t mean I am done with cancer. I am now living in a body that has been battered. I am frail and small-boned, so the double mastectomy took a real toll on my upper back. Despite months and months of physical therapy at a facility specializing in breast cancer, trigger-point injections, and acupuncture, my back has never been the same since. My muscles are in constant knots, completely frozen up in response to all the trauma. This trauma has also caused multiple bouts of axillary web syndrome, or cording, extending from my armpits into my upper arm. Cording feels like a tight rubber band that doesn’t budge, no matter how much you try to stretch it.

It doesn’t stop there. My body continues to be tormented with the “wonder drug” Tamoxifen. Because my cancer was fueled by estrogen, my oncologist told me that I had to be on this drug—which blocks estrogen receptors—for the next 10 years. The traditional protocol was five years, but then a study showed 10 years conferred additional benefit at preventing recurrence. Actually, the plan was for me to take Lupron (to suppress the function of my ovaries), Zometa (to prevent bone metastases), and Arimidex (to stop estrogen synthesis). But I vowed to never take Zometa again after the headache, back pain, nausea, and lightheadedness that ensured after my first infusion. And the joint pain on Arimidex was too intolerable. This is not to say that Tamoxifen is a walk in the park by any means. It’s just the lesser of two evils.

At our engagement party in April 2018, four months after I finished radiation.

I still have joint pain, combined with moodiness, headaches or migraines that can last for days, and a dizziness so severe that I have to grab onto something to avoid falling. The most debilitating side effect is the constant fatigue. Getting out of bed is a daily struggle. Part of my fatigue is likely due to the insomnia I sometimes experience. I’m also waking up at least three times a night to pee, despite extremely painful diagnostic procedures (all of which showed normal bladder function) and dozens of different medications prescribed by my urologist. None have solved the problem of frequent urination. I’m currently taking Gabapentin, which somewhat helps the daytime urgency but not the nighttime. But I suppose anything that can even minimally reduce my 30 trips to the bathroom a day is an improvement. The urogynecological side effects also include vaginal dryness, which makes anything involving that area very painful. And though my oncologist assured me that a study concluded weight gain and Tamoxifen are not related, I have gained about 15 pounds since starting the medication nearly two years ago. I have not changed my eating habits or exercise regimen. I can’t find another explanation as to how I gained weight so quickly and why I’m having such difficulty shedding the extra pounds.

Depriving my body of estrogen has also caused cognitive issues. I now have trouble concentrating and processing thoughts, unable to focus on what people are telling me. My mind wanders to another place. This brain fog is especially debilitating for me, given my profession as a science writer. I need to digest complex scientific concepts enough to be able to write about them in layman’s terms.

Me on my wedding day, April 28, 2019, two years after my breast cancer diagnosis. Credit: Anchor & Lace Photography.

As if all of this isn’t bad enough, I have the additional burden of worrying about getting pregnant while taking Tamoxifen because it can cause birth defects. “Do you think you’ll start trying soon?” people have started asking me and my husband, as we recently celebrated our one-year wedding anniversary. In our case, the answer to that question isn’t so simple. I’d have to be off Tamoxifen for at least two months to make sure it’s out of my system before we start trying anything. Then I’d be rolling the dice with recurrence. And who knows if I’d even be able to get pregnant naturally. If I wait the 10 years to finish my course of Tamoxifen before having a child, I’d be 38. While having a child at this age is possible, I don’t want to wait that long. Right before starting chemo, I was fortunate enough to freeze eggs and embryos with my boyfriend at the time (now husband), and so we do have the option of using a surrogate. But what if I want to become pregnant myself?

The issues I’ve described so far are mostly physical. But there’s also the emotional. I’m three years out, and I’m just beginning to really process what has happened to me. My diagnosis set a series of steps into motion, with everything happening so quickly that it was impossible to focus on anything but getting through them all. Now I’m finally finding the time to reflect. I recently spoke to a young woman just diagnosed with breast cancer and she found solace in the fact that I had to go back to my notes I kept during my journey in order to answer some of her questions about what I had endured.

On most days, despite all that I’ve been through and continue to go through, I am so grateful—grateful that my cancer was detected early enough to be treated, that I am still alive. But on some days, I am bitter that breast cancer robbed me of my late 20s. I am angry that the effects of cancer are lingering into my early 30s. On some days, I long for my pre-cancer body. I long to simply feel well, to feel like the old normal instead of this new normal. Looks can be deceiving. – Ariana Tantillo

“When will I feel normal again?” is a question we hear a lot. Click here to read how this Rethinker feels about it.

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