Welcome to Chemo Sessions

writings, meditations, music, and tips from pals who've been through chemo

Hi Y’all,

Many folks endure chemo alone. Maybe they are going to work afterward. Maybe for them it’s easier to be on their own. Maybe they don’t have someone willing to accompany them. Maybe, like at my local cancer center, they don’t allow family or friends into the chemo infusion room (seriously- can you believe that?!). Some people seem fine by themselves. Others seem lonely.

A cancer diagnosis can be isolating, even when you have a solid support system. I was lucky during my chemo infusions, as much as you can feel lucky when you have a rare and advanced cancer diagnosis with an aggressive treatment plan. Semi-private space, often near a window, a comfortable chair, with the love of my life by my side, at a speciality center with the same nurse present to support me at every infusion. Nurse Oli. I could sing her praises all day. Her confidence comforted me. Her laugh put me at ease. Her consideration and care made me feel safe.

And still, chemo was freaking hard! To get ready for it, to get through it, I learned new skills for coping, for sanity, for healing. I even learned how to find levity in all this darkness. Sure this shit is SAD, but also, cancer is HILARIOUS. In this newsletter, we’ll get to the sad and we’ll get to the funny, too.

I created Chemo Sessions to be a bit of a sidekick in the infusion room, or your companion while you get ready for treatment. It combines much of what got me through my own treatment: writing, meditation, music, and tips from pals who’d already been through it. I’ll throw some jokes in along the way, or at least links to things that might make you laugh. Laughter for me is just as important as the parp inhibitor I’m taking to kill cancer cells.

Let me back up a bit, give you a glimpse into right before I started chemo. 

In 2022, I was a healthy 45 year old woman. My life was great. Did I appreciate it in the way I do now? Of course not! But, really, what did I have to complain about (aside from the state of the entire world, I mean)? Wonderful partner, magical tiny wolf dog, safe place to live, successful business, dear friends & fam especially darling baby girl niece, and a new but serious writing practice that I loved. Here's me. Elated (despite not being a fan of having my picture taken) to be hanging with my dear friend, SJ.

pic by Sara Jane Whatley

In December 1, 2022 a radiologist blurted out, "it looks like you have cancer." This was after a year, yes A YEAR, of me telling a slew of medical professionals that something was wrong. They dismissed me, over and over. A nurse told me I didn't need a mammogram, that I was under fifty and it was unnecessary. An integrative primary care doctor said women's bodies change and I was probably overreacting. A radiologist informed me it was just a cyst and I could have it removed or drained, but it would be pointless since it was likely to come back. I kept telling them it was painful, that things felt off. I knew my body well enough to know that this was a warning bell. A distress signal.

When multiple doctors in our area did not provide me with competent care (one of them performed a botched biopsy out of a horror movie that involved my screams, a needle that felt like a hot knife repeatedly stabbing me, and not enough tissue collected), I looked for other options.

I described my symptoms over the phone to a doctor that I was referred to at John Hopkins. Based only on listening to me, he said that I had every symptom of a rare and aggressive breast cancer, Inflammatory Breast Cancer (IBC), and referred me to Dana Farber Cancer Institute for an immediate second opinion.

We flew to Boston for new scans and a new biopsy (this doctor collected multiple tissue samples and didn’t hurt at all). Dana Farber assembled a team of oncologists who confirmed that I had Stage 3 Inflammatory Breast Cancer and a BRCA2 Gene Mutation. (I know that I have economic privilege to be able to travel for a second opinion and prioritize my health. Disparities in cancer treatment, like all health care, is a travesty in the US. We’re working on a project that improves access to advanced treatment for other IBC patients, focusing on low-income patients, many of whom are Black and Arab women. This project is in the early stages and I’ll share info when we have news). We crossed our fingers while we waited to see if Blue Cross Blue Shield would cover treatment in Boston (yes, what a relief).

This past year and a half, I’ve learned to trust myself and my intuition about my own body. At times, when I think about this long trajectory, I’m pissed about the doctors who refused to listen to me. I say this to remind you, or maybe even tell you for the first time— you are the only true expert on your body. You've been living in it your whole life! Doctors are experts in their specific fields, but all of our bodies are different. Trust yourself. Advocate for yourself. Yes, it’s exhausting, but you only get this one body and no one will care about you as much as you do. And as you become a better advocate for yourself, you’ll find the doctors and nurses who follow through on their oath to patients. You’ll assemble a whole team who will take your health care seriously.

With Chemo Sessions, I’ll provide some things to try, some things to consider, but I’m also not an expert on you. All I can do is share what was helpful to me and some pals I’ve met along the way, and hope that some of it will connect with you.

What is up with this whole meditation thing? I was a mega skeptic. About a year before my diagnosis, my partner Tony and I completed an online meditation class. I kinda hated it. I wanted to like it, but it felt pointless. Actually, I can't name a single thing I got out of it, except for time with Tony trying something new (okay, that's actually invaluable). Still, it didn't work for me, or I didn't get it. It didn't connect. Before my third chemo infusion, when I was totally desperate and scared, I downloaded a meditation app. This time it transformed me. Shocking!

If you want to know how to meditate, observe magical creatures. Our Roxy was a master of mindfulness, of being in the moment. She meditated wherever, whenever.

What will meditation do for you? Maybe nothing. Maybe everything. Probably something in between. It's worth a try. Let me tell you what it did for me. It calmed my central nervous system, which is critical to healing from cancer treatment-the chemo, the surgeries, the radiation, the drugs that we're on for years after. Meditation got me to a place of being okay with what was happening with my treatment. It broke apart my inner critic (that one surprised me. I think cancer also helped diminish that voice-as you might know, a lot less matters when you are facing death). Meditation disrupted patterns of ruminating thoughts, to an extent. I mean, I'm still human. It's a process! Meditation helped me lean into gratitude, and to really bring it to a granular level-- to get thankful for the sound of the leaves carried by the wind, to enjoy watching two strangers laugh together, to appreciate holding a paper menu in my hand and delight in reading the descriptions of the dishes (I love a menu and when the waiter takes my order and then tries to take my menu away, I hold onto it a little too tightly, as if they are stealing my fanny pack).

There are lots of moments when I am heartbroken or angry about having cancer. I even feel jealous of friends and envious of strangers who don’t have cancer. Awful, I know. Then, when they aren't living their best lives, I'm extra pissed. Like why are you wasting your days, stop complaining. Meditation helps me with all of this. Seriously. It helps me be in the mood that I want to be in, and show up in the ways that I want to show up. But first, it helped me feel less afraid.

I plan to post sessions every other week, and will eventually add an audio version so you can listen to my nasally voice (no ASMR here) on your headphones. Please note that my own treatment might interrupt posting. Take what helps, disregard the rest. My hope is that this provides you with some additional support— a calm presence, a few laughs, some practical tips.

All my best wishes for you,

Kelly

My first chemo infusion, before my hair was stolen by treatment! Is that a smile or a smirk? Bring snacks. Fruit especially. And anything hydrating. And crackers.