There’s a really surprising fact about cancer – so much of the trauma occurs in blocks. It’s not some slowly growing snowball that gets worse at the same rate over time.
There are moments or days or a week that leave real scars that rattle in your brain repeatedly. It can take lots of time to figure out why and whether there’s anything you can do to move on. One of those moments for me, and for a lot of survivors, is the first five days.
You are sick. Then you are told you have cancer. Then you have to figure out what you can do to live or die.
So, what has helped me process? Writing it down.
Within days of returning from the hospital, I had to face the inevitable: A shaved head. Luckily, Gary the cat was unharmed.
The act of writing has shown significant benefits. I’ve spoken with several people who have written for Elephants and Tea – a cancer survivor magazine – and each has told me writing has equaled healing for them.
There is also proof in research. Lots of it. One of the most compelling comes from Ben Rogers at Boston College and a host of other researchers. They have shown the unequivocal benefits of writing out your life story as a hero’s journey, where you overcome obstacles like Frodo Baggins in “The Lord of the Rings”.
Personally I liked the journalistic approach. I write how I write. So, here is my story from the first five days. Maybe it helps you write your own.
March 21 — 4 a.m.
An intense pain, shooting down my neck and side, wakes me up from a Benadryl-aided deep sleep. Trying to sit up, I realize I can’t lift my arms and every breath is a struggle. I immediately tap my wife Erin on the arm, who rolls over to look at me.
After turning on the light, her first words are: “We’re going to the emergency room. Now.” She tells me that my face and neck have swollen up significantly. The two-block walk from our apartment to New York University’s Langone Hospital takes roughly 15 minutes. Even one step has me out of breath.
March 21 – early morning
Thanks to Hurricane Sandy, Langone still doesn’t have an emergency department. Instead, I’m ushered up to the urgent care group on the 16th floor, where an emergency room does what no doctor had done in the series of tests over the last six weeks as I’ve complained of breathing issues and chest pain – orders an X-ray.
Within an hour, she tells me there is a blood clot in my neck. By the afternoon, after ordering a CT scan, she tells me the cause of the blood clot: a 10 centimeter by 10 centimeter tumor in my chest.
March 21 — afternoon
There have to be a million ways people first react to learning they have cancer. I’m sure most people cry. Really tough Navy Seals probably don’t, but most of us normal folks do. I cried, my wife cried. And then pretty quickly a light flickers on that tells you as scared as you are, you can’t be paralyzed by that fear. There’s too much work to do.
After catching our feet a bit, we began to plan. My wife and I began discussing what kind of oncologist we would need. I contacted work and told them I’d need to be put on medical leave. I told my parents, who reached out to an oncologist they knew for help and guidance. My brother, an athletic trainer formerly with the New York Mets, reaches out to his network of New York doctors for assistance. My sister goes into her own research push, knowing that we will clearly need help in our daily lives.
My emergency room doctor recommends a local oncologist affiliated with the hospital, Dr. Karen Haglof, whom my wife and I then ask to meet with. Within 12 hours of going into a hospital thinking it was just bad indigestion, and learning I had cancer, we somehow walk into one of the best decisions we’ve ever made.
Such is the story of recovery: one terrible break, followed by a series of lucky ones that get you back to health.
March 21 – early evening
Chest surgery is scheduled for the next morning to determine what kind of cancer I have. A few options are curable, one other is treatable, the doctors tell me. And then they tell me to try and get some rest. Oh, thanks a bunch.
March 21 – evening
Because I haven’t been officially diagnosed with cancer, I can’t go to the oncology ward for the first night. Instead, I’m put on the combined medical and surgical floor. Another lucky break.
The first night in the hospital is especially tough. It’s just you vs. your own mind. It’s the first time you realize that after the support system of family and the doctors, it’s really all about you and the cancer. But for me, night one was when I became an extra on the reality television version of “Breaking Bad.”
You see, my roommate that evening was a methamphetamine addict. Between being given what he called incorrect medicine, his screaming in pain, his 2 a.m. break-out of the hospital and his secret return back to our room, there was no chance for me to even think about my cancer.
When security and hospital administrators questioned him about all this, he said the trip out to 2nd Avenue was just to get T-shirts at Duane Reade. “And why are you yelling all these questions at me? I was honest with you and told you I was an addict, this guy over here [me] is worse than me and you haven’t asked him anything.”
So, there you have it, according to the meth addict. I’m the worst. It happens.
But, for the first time in a day, I laugh..and keep an eye on my wallet
March 22 – surgery
Surgical rooms are freezing. When they rolled me in I asked one of the nurses if she took a wrong turn and we were at the morgue. Not even a giggle.
The anesthesiologist was a different story. He could tell that the bad jokes and bug eyes were reflective of a scared kid. To ease the tension, he began telling me about all the dance clubs he used to go to in my current neighborhood. This place had all the cute girls, but this other place had better music. Then, the drugs kicked in.
March 22 – post surgery
Having a robot cut three holes in my chest isn’t the most fun I’ve ever had. Neither is still being attached to a tube that is draining my lungs.
I wake up in intense pain in a recovery room, pushing my pain button as much as I’m allowed. It does little. My wife walks in and my first question: Any chance you could see if my old roommate is still around? Could use the meth about now.
March 23-25 – surgical recovery
The first two days in recovery are just a struggle to stay alive. That may sound like an oversimplification or an exaggeration, but that was my mentality. Every breath and even the simplest task for me – talking – delivers monster pain. Mike, my no-nonsense Russian nurse, pushes me through. No excuses, no complaints. Just do it.
Russian nursing seems to me like Russian drinking. You take your shot of vodka, and toast to–It could be worse.
March 25 – “banking”
Until I have the official word on what type of cancer I have, they can’t check me into oncology. Instead, I’m placed in a sort of holding area for a few days. The good news is that it’s quiet and empty. The bad news is that my improving health has put two important things on a sudden collision course: visitors and “banking.”
Because of the lengthy regimen of chemo to come, there is a not insignificant chance I will not be able to have children. In order to prepare for that possibility, one must “bank.” Unfortunately, I wasn’t able to leave the hospital as a still recovering in-patient. So, for me, banking meant taking care of business just before and just after surgery, with my mother on the way to town and friends stopping in and out. That’s a lot of pressure for a young man to take.
For my wife, banking meant a race against the clock to carry our potential future child down 2nd Avenue in a paper bag. On the plus side, our future kid won’t have any questions about how he/she was conceived.
March 26 – an answer
Primary mediastinal b-cell lymphoma, a rare form of non-Hodgkins that presents in your chest and is more common in women than men. The treatment is a drug regiment called R-CHOP, where each letter stands for a different drug, followed by radiation.
This most-often prescribed regimen for my cancer had a success ratio of about 83% with my cancer. So, when the on-staff hematologist and Dr. Haglof said we probably weren’t going to do that, it raised more than a few alarm bells. Instead, they wanted to try a heavier chemotherapy regiment called dose-adjusted R-EPOCH.
March 26 and 27 – question time
I’ve only been paid to do two things in my life – be an often annoying journalist and work in a restaurant – both of which served me well over the next two days in the hospital.
By now, a couple of my bosses at The Wall Street Journal had started to show up at the hospital. They are also annoying (I mean that as a compliment!) so they started asking a bunch of questions about the treatment. And I really didn’t have great answers.
When they left, I really was struck by advice I’ve gotten over and over in my career: If you don’t understand something, that’s probably the story.
So, I dug in to understand it.
I read research from biostatisticians and others that collected across hospitals. I also called any professor or doctor that came across regularly in my research. Some returned calls, others didn’t.
The key find for me was a landmark study in British Columbia that drilled down on the addition of a drug called etoposide into chemo regiments, the E in R-EPOCH. This really helped explain their reasoning: radiating my chest, even if it meant a cure rate of 83%, would nearly guarantee heart disease later in life. I was young and could take a higher dose of chemo.
We discussed the studies and the etoposide. For round 1, we’d go with it. We had a gameplan.
Postscript:
Over the next weeks and months, I would read more, learn more, ask more questions of doctors and in time get a handle of the treatments effectiveness and what it would do to my body.
At the time of my first treatment, there really hadn’t been a landmark study of my cancer and my exact regimen published. There was one on the way, I was told. On April 11 of that year it was published. The study, in the New England Journal of Medicine, showed survival rates above 90% with my new regimen.
This was good.
But even with all that research, I didn’t fully understand the risk I had taken. The higher dosage – so high that it had to be administered slowly, around the clock, for days at a time – has likely contributed to a higher level of sickness in the years since. It saved my life, but there is a cost that I’m doing my best to get a handle on.
Meanwhile, I continue to get flashbacks 12 years later to those first few days. Over time, writing has helped frame them more positively as something I overcame.