Now S**t’s Getting Real: Between Diagnosis and Treatment

Just over three weeks passed between receiving my official cancer diagnosis and starting treatment. Those weeks were bizarre, uncharted territory. I felt propelled forward on a path for which I had no map and no reference points much less any control. I knew I had a deadly disease that, left untreated, would consume my body, and yet I felt perfectly fine.

I could only speculate about what the next several months of my life would be like, having only slim, mostly anecdotal information about other patients’ experiences and common side effects to shape my projections. I had to rely on doctors and nurses to tell me where to go, what to do, and what to expect.

While part of me was even-keeled and philosophical about the diagnosis and what was to come, there was still so much about those weeks that was strange and awkward, so much that I had no idea how to handle. I know there was no one “right” way to go about it—processing my emotions, telling people about my diagnosis, and planning for the next few months, which included trying to anticipate what I would want and need—but it does nevertheless feel like my approach was somewhat haphazard and reactionary. Maybe muddling through was really the only option under the circumstances. 

Indecision Overload

First there was the matter of telling people I had cancer. This was perhaps the most awkward element of my cancer experience. Whom should I tell and how and when should I tell them? Blast email? Not really my style. Facebook or Instagram announcement? Definitely not my style! Group text message? No. Individual text messages? Maybe.

That led to the next series of questions. Namely, was there a hierarchy of information privilege, with some people warranting a phone call, while others merited only a text message or a place on a blast email? Did I need to tell everyone in my contact list or could I simply trust the grape vine? What about telling people in-person? Did I even have the luxury of waiting until I saw people to tell them, or should I act with more alacrity? Was there an urgency in sharing this news? And why did I even feel compelled to share it? I came up with no clear answers to these questions.

Then there was trying to figure out what to do about work. When and how much should I tell my coworkers, staff, and managers? Would I be able to work after I started treatment and if so, how much? Should I even plan to keep working or simply take advantage of my firm’s disability benefit and go on leave right away? If so, who would take over my duties? Having no real idea how I would feel on chemo, it was difficult to anticipate the impact it would have on my work schedule. 

Getting Ready

The buzzing of these questions in my head was interrupted by all the medical appointments and related tasks I now had to get ready to start chemo, all of which occurred in the span of about two weeks. In no particular order, except the first one, which kicked off all the others:

Meet with my oncologist

Give blood and urine samples to make sure my blood counts, liver, and kidneys were okay

Get an echocardiogram to baseline my heart function

Get a pulmonary test to baseline my lung function

Get a full-body PET scan to determine the stage of my lymphoma

Get a chemo port inserted into my chest to facilitate chemo administration

Take a tour of the infusion center

Attend chemo class to learn more about what to expect

Pick up prescriptions for possible side effects

From Philosophical…

Before my first oncologist appointment—before all that started—I went to Utah for a few days over the 4^th of July weekend. I felt healthy. I wanted to spend time with relatives and soak up the nice weather. I was matter-of-fact and even-keeled as I gradually told close friends and relatives the news. I started a Pinterest board and read up (even more than I had already) on Hodgkin’s Lymphoma, chemo, and what to expect. Information and proper planning, after all, are the keys to success in any endeavor.

On July 4th itself, I went with my mom, teenaged niece and nephew, and some cousins and their families to the local park and wave pool, where we picnicked and swam and played card games in the afternoon then watched the fireworks after sundown. We didn’t talk about cancer—mine or anyone else’s—at all. We were focused on applying sunscreen and eating more potato salad and searching for my nephew’s towel (which had apparently been stolen).

As I bobbed around the wave pool in an inner tube, I idly wondered how my body and life would change in the next few months. When you feel good, it’s hard to conceive what it will be like not to feel good, even when you know intellectually that it’s coming. I’d been sick and felt poorly before but I had no reference point for what chemo felt like. Would I feel like going to the pool and having picnics in August, after I’d started chemo? No way to tell. 

…to Freaking Out

Once I got back from Utah and had to face the first meeting with my oncologist, it was a different story. Having an oncologist, going to see an oncologist for the first time, saying the phrase “MY oncologist” meant this cancer thing was really happening. To me.

It only got weirder during the first couple of meetings with my oncologist, when I got that list of tests and procedures above and had a date for my first chemo treatment. This chemo thing was indeed going to happen. There was no longer room for philosophy. Now s**t was definitely getting real.

I’m going to tell you right now that, while I tried to act like doing all this stuff was just routine, just a no-big-deal part of my new life as a cancer patient, I was full-on FREAKING OUT on the inside through all of it.

Like, “Please excuse me a moment while I hyperventilate” freaking out.

“I need a couple more cookies” freaking out.

“I’m just going to sit here and stare out the window because that’s all I can handle right now” freaking out.

Whatever Zen I’d experienced at the pool on the 4^th of July was gone.

Part of my brain was convinced, or at least hopeful, that this was not actually happening, or not actually happening to me at any rate. I was clearly caught up in some Matrix-esque alternate reality that looked an awful lot like my life but wasn’t.

Real or not, the walkway was moving and I was on it.