Younger than the Sun
Hello, it’s me — on this weird anniversary I have, defined by medicine and science and research, by faith and sheer luck of being born into indomitable Irishry. This date gets a nod every year, but today hits different, with a wrinkle in the unfolding of Year 23. Twenty-three years ago, in my late-30’s with three kids under nine (the youngest not yet in school), I was diagnosed with a particularly aggressive breast cancer. Nothing looked good.
Math and data and odds were stacked so high in favor of the disease, it was difficult to see beyond them. With tenuous survival outcomes for five years, and no data past ten years, we (that would be me, my doctor, my husband, my mom, and my sister who is a medical professional — because health decision are personal, and private) decided to bet it all on getting in a clinical trial. Science, man. My doctor — who is still in my phone, and I’m so bad keeping people in my phone if we don’t talk/text on the regular — kept telling me I was one of the healthiest people he knew, which counted for quite a bit. I opted into a year-long trial, and qualified for a drug still in clinical research. Shout out to the yew tree, poisoned as it is. We knew we rolled the dice for me to be very very sick for a year — as sick as I could possibly be — on the slim chance I could be well again. It was a gruesome time.
I tell this story more than I used to; despite being difficult and surreal, there are still 1-in-9 women being diagnosed with some form of breast cancer. I used to gloss over it, ‘oh that was a tough time’, or nodding to other survivors in solidarity. Now I am more unvarnished in the telling, like, ‘that nearly broke me’, ‘we tapped out our savings’ (and we had good insurance), ‘our little church-school community carried us’, because you cannot power through alone, and you need all your reserves. All true. Also true: my husband’s employer made Christmas happen for us that year, my employer let me work from home when my WBC was too low (before that was even a thing), my mom and my sister both took leave to be with me during treatment cycles, I learned to give myself daily sub-cutaneous injections with purple bruises up and down my thighs for months, there are almost no photos of me during that year or the year after when I was recovering. Being scarred, and scared, was the new normal.
Other fears still hang on. Being in a clinical trial for a drug — a drug now in use, reformulated to be a little less evil while also being quite wicked — means I frighten insurance companies. Oh, and the whole ‘pre-existing condition’ thing means if I ever lost my insurance, the only coverage would be with impossible cost (to me) in this pyramid-scheme that is our healthcare. I remain classifed as an enormous risk, and I have strong feelings about that (reminder: vote for people who do not de-value you to just a medical statistic and want to price you out of care.). It’s an appalling reality that others see fit to gauge our worth based on the decisions we make, especially when options are limited and health (or safety or family, in a larger world-view) hang in the balance. Fear is fear, and dismissing it does not lessen it. I promise you, my doctor (the one still in my phone) is right: I am one of the healthiest people you know. Nevertheless, for me, scary facts exist: I cannot be radiated again, I compromised my heart and lungs (shout out to running anyway), I would not qualify for chemo drugs derived from the yew tree again. I chose this path, and it was the right choice, for me. Even so the specter remains: what if it comes back? Sometimes I think about that, but not often. Until this July.
In mid-June, I noticed a spot I hadn’t seen before on my arm. I did what some call ‘keeping a weather-eye’ on it for maybe two weeks. It was not good, and I knew it. I went in to get it checked that first week in July, and my doctor (different doctor, not the one in my phone) felt so strongly against it that he cleared his morning calendar and suddenly I was having a quick surgical procedure to biopsy it. We both anticipated bad news, which he confirmed by phone a few days later. I was in the drive-thru of my bank when I took that call. All the words. Melanoma. Cancer. Malignant. Fast-growing. Clear-your-schedule. Another surgery. Wait, I said. I’m going on vacation in two weeks, my son gets married in two months. ‘There is no waiting’ was his reply. I had surgery in July, and I told him I’m not precious about scars (it’s far too late for vanity) and to be aggressive about margins. He was; I now have a notable scar and a good divot out of my forearm. But I also had clear margins. For a few weeks there, I had a cancer but now I do not. The relief was staggering.
What I learned — besides being vigilant about your own self — is that I might not have good bandwidth for this possibility. I still felt the traumatic aftershocks from 23 years ago, fresh and strong. The shield of not-knowing-what’s-ahead is gone, replaced by genuine knowledge and experience that cancer treatment will break you: physically, emotionally, personally, financially. You’re not sure what fight is left in the dog (the dog, in this analogy, being you.). Very few options on a decent throughline existed, and the best bet was an aggressive surgery with no further treatment. Prayers up. I sat in the drive-thru of the bank in July for a good while before I called my husband, and then sat longer composing a text to the fam group and my girlfriends. I had surgery three days before leaving on vacation, and didn’t get the ‘clear margins’ call until two days after I returned home. It was the ‘best possible outcome’ in the refrain of all the silent prayers and wishes. If I had not been at the most peaceful place I know during those limbo days-in-waiting, the coping would have looked far different. Patience is not for the faint-hearted.
In the weeks afterwards, I simply savored everything, reveling in a relief only I could comprehend. August felt unfettered, with days hitting a balance of being amplified and muted all at once. I took my dog to the quarry beach at daybreak, to the cold clear water there. I tried new recipes, read more mysteries (there is a whole psychology to reading mysteries, fyi), tuned in to Guards baseball like a religion, visited a friend at lunch and stayed for dinner, took an impromptu trip to the ocean days before my son’s wedding (highly recommend, but also do not recommend — bless my friend who told me if my flight was cancelled she would drive me back across seven states so I’d be home on time), listened to live music, curled up on a couch and napped or watched 70’s movies, stayed up so late texting and talking, got up early because sunrises never disappoint, and relished the hell out of the weeks before the school year was fully underway. I did what Warren Zevon recommended: I enjoyed every sandwich.
There is a much value in the little things. For so very long when I was so very sick, nothing tasted tasty, everything was metallic and acrid and not savory. Smells were overpowering, noise was overwhelming. Neuropathy is no joke, as you lose feeling in your hands and feet; you probably shouldn’t drive, or lift your toddler (you do both). All your senses are nonsense. You forget, you actually forget, that there is so much deliciousness, so much simplicity, until it eeks back into your daily, and you are like, ‘oh WOW, seafood!’, or oh damn hearing Van Morrison on acoustic guitar is beautiful, or hell yes this coffee is delicious and sweet-tango apples are juicy-tart and feeling the sand-bottom of Lake Erie anchors me to this very earth. Twenty three years is worth celebrating, of course, but (spoiler) so is every damn day. And on the really big days — the days you could not even wish for aloud when you were so ill and your kids were so small, and your most fervent hope was to see them grown — you dance with your son at his wedding and time stands still when he chokes up and says “I’m so glad you’re here”, and that’s the all of it.
What do we have? 23. And me. What’s next? 24. And more.
