On Cancer
Tomorrow, August 4th, 2022, marks my final scheduled chemotherapy treatment at Johns Hopkins Hospital. You see, back in April, I joined the roughly 1 in 2 people worldwide who will be diagnosed with cancer at some point in their life. My life since that diagnosis has revolved around PET scans, oncology appointments, and these lovely chemo infusions. As you might imagine, I’ve had plenty of time this summer to reflect on what it means to get a rare cancer as a 31-year-old. Here are a few musings on life, career, and how this experience has changed me:
1 in 38,461
Hodgkin Lymphoma is a rare blood cancer that — unbeknownst to me earlier this year — can strike young adults.
The disease occurs when infection-fighting lymphocytes start growing out of control and create tumors throughout the body. Hodgkin’s Lymphoma is unique in that a new type of cell appears on the scene — something called a Reed-Sternberg cell. The Reed-Sternberg cells attract tons of healthy immune system cells into the lymph nodes, causing the types of swelling I experienced in March and April. Nobody quite understands what causes the Reed-Sternberg cells to appear in the first place, or why the healthy immune cells are unable to target the rogue cells despite surrounding them within the lymph nodes. However, what is clear is Hodgkin’s Lymphoma is an aggressive cancer that — left untreated — would have killed me within a few years.
Thrust into a Medical World
It’s a running joke in my overwhelmingly medical family that I’m completely disinterested in medicine. And yet, with a growing mass in my neck and an unresolving series of illnesses, I started to appreciate that something was potentially wrong. Concern really set in when a CT scan at Penn Hospital revealed not only the one mass in my neck, but several throughout my chest and lungs. I’ll never forget the furrowed brows days later at Johns Hopkins during my biopsy — among them, my brother’s, an oncologist himself who would find himself orchestrating my care.
By the time I got the call, the diagnosis was almost a relief. We had a name for what I had. It was treatable, curable even, and I would start chemotherapy within the week.
You Have _____
One reflection on getting cancer as a 31-year old is to recognize that the way we talk about cancer is a little lazy. Every cancer has a unique pathology. For me, I have Stage 2a nodular sclerosis Hodgkin’s Lymphoma — but even that stops well short of describing the unique characteristics of my cancer relative to others in the same bucket. Two people with breast cancer who have identical ages and medical histories almost surely have two very different cancers. The only thing they have in common is that they started from a breast tissue cell.
I knew next to nothing about chemotherapy before starting my treatments, but I was surprised to learn that the four chemicals they use in treatment for my cancer (doxorubicin bleomycin vinblastine dacarbazine) are almost entirely unique from the chemo drugs they give for other cancers. So of course everyone’s experience going through treatment will be different from one another: we aren’t even getting the same drugs. To be a good ear to someone going through cancer treatments is, I think, to move beyond the preconceived notions of what a cancer patient should look like, feel like; how they should be feeling about themselves in that experience. It’s all very individualized.
The Drip Drip Drip
Getting this diagnosis in 2022 is both to appreciate recent advances in medical technology, and also to wonder what could be in the future. Back in the 1970s, Hodgkin’s Lymphoma was one of the first cancers to be shown to be potentially curable with chemotherapy alone. Back then, a regime known as MOPP was used to treat patients (I remember the acronym by thinking of a kitchen sink approach), which had the benefit of curing as many as 70–80% of all patients, but with one important side effect: most of the patients turned up back in the hospital years later with a host of issues, among them secondary cancers, leukemias, and permanent immunosuppression. The 1980s brought a new chemotherapy regime, called ABVD, which remains the standard of care for front-line therapy today.
As I’ve sat through 7 chemotherapy sessions overlooking a plush lawn in Baltimore, I’m struck by how primitive chemotherapy really is. The basic principles of chemotherapy were established in World War II, when it was found that many of the chemicals invented for human warfare could be dialed down slightly for medicinal benefit. The irony is not lost on me when my nurses come to my little station wearing full body protective equipment to ensure they do not make any contact with the very drugs going directly into my veins.
Chemo is not fun, and it comes with a host of injustices that can otherwise fade into the background against the narrative of the triumphant cancer survivor. In order to even get my treatments, I have had to do bloodwork every two weeks to ensure I have enough healthy cells left to accept a new infusion. Midway through my treatments it became clear that my veins were starting to reject the drugs and were no longer providing a blood return. This forced needles into more and more unsavory places, alternating arms, elaborate PIC lines — all before I even got the drugs. On one particularly traumatic chemo day, I was pricked and prodded 14 times before the nurses could establish an IV to my blood stream. 3 full hours of needles probing in and out of collapsed veins. To add insult to injury, a few days later I developed an allergic reaction to the gel they used to place the IV and broke out in hives.
To Work, or Not to Work
I started Magnolia with my business partner, Mark Bernstein, in 2016. Six years later our company operates nationally, developing environmental markets and managing conservation projects with a lean team of ten full time employees. When I was diagnosed I had no idea if I would be able to work during my treatments, or if I would even want to. I’m incredibly appreciative of the fact that, as a founder and business owner, I didn’t need to negotiate the terms of my engagement with anyone. I would work as much or as little as I chose.
As it turns out, I chose to work throughout my treatments, taking roughly 1–2 days off each cycle to recover from chemo. I say this not to elicit some heroic response from the audience, but to say that I found work a healthy distraction from my medical journey. Tomorrow, my “Out of Office — Chemo Day” repeating calendar alert will chime for the final time.
One surprising thing is how open I felt talking about my journey with some of our trusted clients. I remember one morning just prior to starting treatments, I took a call from one of our buyers while I was driving to a fertility clinic to deposit a ‘sample’ for sperm banking. He asked how I was doing, I’m sure blissfully unaware of the Pandora’s Box he was opening. I fully answered the question and explained the drive I was making. I didn’t expect the response I got on the other side of the phone. It turns out many have been touched by cancer or experienced similar events in their lives, we just don’t talk about it openly, especially in a business setting. I would receive texts and emails from all sorts of folks I’ve interacted with only in a business setting. It’s a beautiful thing about business that the relationships you make can transcend their origin stories.
Lightning Strikes
Intellectually we know that bad things happen to good people. That lightning strikes, and sometimes there is nothing you can do about it. Those who know me understand that I take my health seriously. I run, I crossfit, I Strava: I do these things not only to perpetuate a millennial stereotype, but also because I derive satisfaction from accomplishing things physically. None of that mattered to my cancer. One day, I was suddenly thrust into a numbers game. Gone were the mile PRs and WODs; in were the 5-year survival curves, Deauville scores, and relapse rates.
On an otherwise unremarkable infusion day, a small amount of chemo leaked out of a vein in my bicep and — several weeks later, would start to cause unrelenting muscle twitches in my arm. The only problem was that I didn’t know the chemo leak was the cause of my twitching. Instead, grappling with the whiplash of my cancer diagnosis, I briefly became convinced that I had not one but two rare diseases: Hodgkin’s Lymphoma in my neck and chest and ALS everywhere else. That paranoic curiosity led me to a famous speech delivered on July 4, 1939 by then 36 year-old Lou Gehrig in which he famously coined himself the luckiest man alive weeks after his diagnosis and retirement from Major League Baseball. Lou Gehrig would succumb to ALS just two short years later, his brain sharp but body completely failed. 80 years later we still do not have effective therapies against ALS.
I’m still coming to terms with my newfound appreciation of lightning. Previously a concept, something I read about, maybe saw in the distance — I’ve now felt it. It’s run through my body, and out my toes, burning a little scar in my shoe maybe. I think there can be a healthy appreciation for lightning, one that recognizes that we are owed nothing in life, but channels that uncertainty into a productive empathy. My cancer is but one form of lightning: I think here of those who have ended up in the wrong place at the wrong time; the victims of gun violence in America, of freak incidents or terminal illnesses. These days I see lightning a little too brightly, but I expect there will come a day when the anxieties over the next scan, the over-googling of the next side effect, all of that will be replaced with a more balanced energy. We live in a world of lightning. We live, in a world of lightning.
Coming Full Circle
I come from a family of doctors. My father, Robert Yarchoan, developed some of the first effective therapies used against HIV. My mother, Giovanna Tosato, studied essential stem cell processes and resultant tumors as a researcher at the National Institute of Health. My brother is a rising star in his world of oncology, serving as an Associate Professor at Johns Hopkins. And then there is me, the disinterested cancer patient.
Growing up I thought my family was a little too fixated on people who were dying. I remember conversations at the dinner table revolving around cell processes, new drug conjugates, all the rest of it. If only the same attention were given to living, I thought, then we’d really be onto something.
The fact is I’m tremendously proud of the work my family, and all the medical professionals out there, have done to advance our understanding of health and wellness. My diagnosis was a death sentence until suddenly it wasn’t, and I look forward to the day we can say the same about other cancers and diseases. Money that is spent advancing these research initiatives is money well spent, in my mind. If we can launch a telescope into space that can peer into galaxies far away, we can find better therapies for cancer than some chemical compounds invented for warfare eighty years ago. We can and should do more to incentivize innovation in this sphere.
The People Who Help You Through It
It is absolutely true that you learn about yourself, and the people around you, when going through an experience like this. My long-term boyfriend Andrew and I developed our little rituals. We would drive down every two weeks for my treatments and stay with my brother’s nurse practitioner, Paige, the night before chemo. The next morning, it was a brisk jog followed by the big inhale into the hospital. And then the awful, steroid-y, metallic, nauseous few days to follow. Gone was our trip to Europe; in were the walks in Mantoloking, NJ where his family has a beach house. It wasn’t a lost summer, just a very different one than we had planned.
I am extremely grateful to have such an incredible collection of friends from different stages of my life. I received some of the most thoughtful messages and trinkets during my treatments. It was never the thing but always the thought that mattered. If you’ve read this far and you fall in this category (not the giving; just the being): thank you, from the bottom of my heart.
Where We Go from Here
When I was first diagnosed, I figured I would have a very weird and uncomfortable five months, followed by a large party and a return to my prior life. As I approach the end of that five-month weirding, I have come to appreciate the anticlimactic experience of cancer. Sure, the diagnosis part is a little dramatic. But the rest is a slow burn, and then a void — first of not knowing whether the treatments really worked, and then constantly needing to check to make sure they are still working. Stepping beyond the physical side of treatments, the mental side I think will take even longer to heal.
Roughly 15% of people with my cancer will eventually relapse and need salvage therapy, which usually entails a stem cell transplant along with more exotic immunotherapies. However, almost all of the relapses occur within the first 5 years. If I make it to 36 without a relapse, some angel somewhere will deem me cured of my Hodgkin’s Lymphoma.
Of course, I’m soberly aware of the data on long-term outcomes for lymphoma patients who undergo the treatments I will finish tomorrow. For a variety of reasons — some of which is attributable to the chemotherapy drugs themselves, and some of which is still unexplained — Hodgkin’s survivors suffer other health issues and malignancies at a significantly higher rate than the normal population. Sometimes the secondary cancers are other blood cancers; sometimes other solid tumors. As a group, we just seem to have more health issues as we get older.
I have come to terms with having a close relationship with scans and perhaps even oncologists for the rest of my life. But I think there’s a silver lining to having an intimate encounter with mortality at this age. Nothing is promised. Nothing is assured. I can’t wait to make the most of the years ahead.
