Until it Grows Again

I shaved my head today. Well, technically, Justin shaved my head. And on his birthday no less.

I decided not to do cold capping or to a buy a wig. Cancer is expensive and difficult enough to fight, why spend money and effort on vanity? I want to pour everything I have into fighting and maintaining some physical strength.

I didn’t give hair loss much thought, really, other than buying some cozy hats to keep my bald head warm. So I was quite taken aback when the buzzing of the clippers started and my eyes began to burn, a lump grow in my throat.

Now when I look in the mirror, I look like I have cancer.

When I got pregnant with Lillian I was so happy and relieved to have a healthy pregnancy make it across the eight-week mark, to hear that deep “thump thump” of a tiny heart beating for the first time, that I didn’t bat an eye at the oncoming host of symptoms (some of which NO ONE TALKS ABOUT OR PREPARES YOU FOR?!) coming my way. In fact, I welcomed them. As someone who’d lived with constant anxiety every time I got pregnant — does that feel right? I don’t feel as queasy as I did? I’m not peeing as much as yesterday? My sense of smell isn’t as sharp? — the constant symptoms reassured me that everything was going as it should.

With chemo there are a lot of similar symptoms — tummy troubles, nausea, fatigue, reflex (OMG THE REFLUX) — but none of the comfort. You’re likely to have side effects from your immune system being wiped out, good and bad cells being attacked indiscriminately, so these symptoms don’t give the same sense of ease that pregnancy symptoms might. And you get bonus side effects, like your hair coming out in clumps. Every. Time. You touch it. And the dehydration?! Oofh.

It’s been a rough few weeks. After my first infusion I initially felt great. The next day I walked two and a half miles and was pretty pleased with myself. The day after I was tired, but still good. Then Saturday was Alex’s birthday — and party day — and the fatigue started to weigh me down. I couldn’t imagine not being at the party so I masked up and sat at a table for most of it. Just the little bit of walking around and socializing was taxing.

From there things went downhill. A fever and infection resulted in days upon days in bed. I didn’t have the energy to do anything except sleep.

I typically have a running note in my phone to capture thoughts as they pop into my head, ideas to blog about, musings to share. For two weeks I had nothing.

I’m hoping now that I have one round of the Red Devil (a somewhat appropriate nickname for the type of chemo I’m getting — it’s red and makes you feel like hell, but it is highly effective and is a key tool in my survival) under my belt I can head some of these side effects off at the pass. I am not missing an opportunity to hydrate or protein load, that’s for sure. Round two was this past week on Thursday and I’ve felt much the same as round one — great the day after, now sliding into extreme fatigue.

But at least the thoughts are slowly trickling in. I feel off my writing game, but I’ll get there.

I’m also thinking about what I want to do after cancer. The days are moving slowly, but I find myself looking to the other side of this for motivation. There is so much I’m eager to do once I have strength and health on my side.

I want to contribute to the kids’ school in a meaningful way, sharing my time and talents where I can. This community — comprised of folks I barely know, if at all — has stepped up so big I’m overwhelmed by their selfless generosity and sincere concern. I am so infinitely grateful our journey to find the right place for the kids landed us here. We knew it was a great choice before, but the support we’re experiencing now is more than you could ever expect or think to research when looking for an elementary school. Meals, donations, hugs, play dates, gestures of love — showing up in all the ways that are helpful and needed.

I want to make a bigger impact at work. Chemo brain combined with fatigue has made me feel like a burden. I love what I do and get so much fulfillment out of both what I do and where I do it. I’m eager to recommit myself to driving important change and making a difference in this world. I have so many big ideas to help the organization and our efforts grow, I just need the energy.

I want to contribute to the cancer community in some way, although I’m not exactly sure how. There are the easy-to-find walks, fundraisers and various events held by all the different cancer organizations in chapters from coast to coast each year. But I’d like to do something more. There is much awareness about breast cancer, to be sure, yet there is still so much women don’t know — or maybe it’s that it isn’t relatable? It feels too scientific, routine, not real? I recently received test results which confirmed I am positive for the BRCA-I mutation. A diagnosis which returns a 72% risk of breast cancer in women who have it. I never considered myself at-risk — nor have any of my doctors — so never explored

testing. I’m a novice here and have only scratched the surface, but using my voice to shine a light on dark, lesser-known corners of breast cancer feels like a way I’d like to make an impact.

I’ve also thought about helping women who aren’t as fortunate in catching their cancer early. Perhaps I can share my way with words to help write their story, communicate their legacy. That feels like a much bigger effort, but something I feel a desire to do in my chest.

Two of four Red Devils down, then 12 more infusions before I can close this chapter. And my hair starts to grow again.