This is Not Going the Way I Planned

It all started with a lump in my neck. I discovered it when I was giving myself a neck massage one day in May 2016. It was not just a knotted muscle. It was bigger, and round, like a marble. I figured it was just a swollen gland and would go away in a few days. When, a week later, it hadn’t gone away, I made an appointment to see my doctor. I knew that having a lump in your neck wasn’t normal but I wasn’t really concerned. I felt fine and had gotten a clean bill of health at my annual physical in February.

Over the next few weeks, I had multiple tests to rule out various chronic illnesses and autoimmune disorders. My blood work showed that general markers for inflammation were off the charts, meaning something was definitely going on in my body but the doctor didn’t know what. An x-ray showed “shadows” in my chest and an ultrasound of my neck revealed several extremely enlarged lymph nodes along with a normal thyroid. I also had a CT scan, which clarified that the “shadows” from the x-ray were also enlarged lymph nodes. I tested negative for Lyme disease and rheumatoid factor (an indicator of rheumatoid arthritis) but tests for lupus and sarcoidosis were inconclusive. Finally, my doctor ordered a biopsy of the lump (which was one of the enlarged lymph nodes).

I think my doctor knew from the beginning what was causing the lump, but she wanted to be systematic and thorough in her investigation. She warned me during the follow-up visit that I could have a type of cancer called lymphoma.

Cancer. It could be cancer. I felt oddly not alarmed. I added lymphoma to the list of possible illnesses I spent hours researching each day.

The biopsy was straightforward and went smoothly. A doctor used lidocaine to numb the area around the lymph node then inserted several thin needles to withdraw single lines of cells. He used an ultrasound positioned on my neck to guide his movements. A man from the pathology lab was in the room during the procedure and immediately took the extracted cells away in a special case to be examined. When it was finished, a nurse cleaned up and put a band-aid on my neck. The doctor left while I stayed in the narrow procedure room to recover.

A few minutes later the doctor poked his head in the room and said that, upon initial examination, the cells he’d extracted were “worrisome” and he needed to do another biopsy, this time with a bigger needle to get a bigger slice of cells. “Worrisome” was clearly a euphemism for “cancerous.” In light of my primary doctor’s earlier warning, I wasn’t overly surprised to hear this. It wasn’t this doctor’s job to diagnose my illness or deliver the bad news, but he had inadvertently done so. Cancer: confirmed. 

When he told me about the worrisome cells, I was lying on a bed with a blanket, holding an ice pack to my neck where the needles had been inserted. I was sipping from a juice box and watching a television mounted near the ceiling of the opposite wall. A packet of graham crackers was on the table next to me. On the TV, an American couple in their 50s were looking for a house to renovate in a village in southern France. It was mid-morning and I had to go to work after. The second biopsy meant I'd be in later than I'd told my coworkers to expect me.

The doctor looked so anxious as he spoke. I originally thought he was anxious about telling me the cells were “worrisome,” given what that could (and did) mean, but later I concluded that he was actually anxious to tell me that he had to stick another, bigger needle in my neck. Most people wouldn’t be too happy about that.

I tried to reassure him that it was okay, that I knew it could be cancer. He asked me conversationally as he numbed my neck again where I would get treatment. Now I definitely knew it was cancer.

When I got to my car afterward, the world felt a little surreal and my brain was buzzing. I didn’t have an official diagnosis but the biopsy doctor had as good as told me that I had cancer. I didn’t know what I felt or how to process, well, any of it. Should I cry? Should I call someone? Should I meditate? Should I dismiss that conversation with the biopsy doctor until I had more information? Should I get a cookie? (Yes, always yes to a cookie.) Should I listen to music that expressed rage or something calm and soothing? Heavy metal or Enya? Or no music at all? I had no idea.

The next week I got the official diagnosis from my doctor: Hodgkin’s Lymphoma. It was June 28^th, 2016, early evening. I was her last appointment of the day. I left her office feeling strangely calm. The world felt more surreal than ever but at least I knew what I was dealing with. No matter how bad the news, it’s better to have an answer, a diagnosis, a plan.

(A PET scan a few weeks later showed that my lymphoma was Stage 3 (of 4), meaning it was in lymph nodes above and below my diaphragm but had not spread to any organs. Specifically, it was in the lymph nodes in my neck, chest, underarms, and stomach area, but nothing lower on the body.)

Outside the doctor’s office, people were returning home from work, heading to the gym, going for a run. I called my sister with the news. I got a pedicure and read the information about Hodgkin’s Lymphoma that my doctor had printed for me. When I came out of the nail salon, it was pouring rain. My flip-flops squelched and my feet slipped off them with every hurried step to my car.

I had to go back to my office for an evening work event. I had just learned definitively that I had cancer and I had to go to work and try not to think about the fact that I had cancer for the next few hours. Focus! I have cancer. Focus! I have cancer. Focus, girl!

I now had a new identity that I’d never wanted: cancer patient. I knew that if all went well, I’d later have the follow-on to that identity: cancer survivor. I suddenly belonged to a club to which I’d never applied for membership. I also didn’t see many benefits to being in this club. Did I get a free t-shirt? A complimentary tote bag? Pre-sale access to concert tickets? This club was sounding lamer and lamer the more I thought about it.  

It is impossible to know how you will react to a cancer diagnosis until you get one. It’s impossible to know how you will feel and what you will think and what you will want in that situation until you’re in it. With every step after my diagnosis—every medical appointment, every procedure, every discussion with a nurse or a medical technician—my mind reeled a little more. Reality got stranger and stranger. In fact, at each of those points—and particularly at the first meeting with my oncologist—I just kept thinking, “Now s**t’s getting real.”

Hodgkin’s Lymphoma has an extremely high cure rate, with 90% of patients living cancer-free 10 years after treatment. The treatment is very protocol-driven with few variables. If you have to get cancer, this is the one to get, I suppose. That was what I kept telling myself, the silver lining I looked to before and during treatment. It helped to know that I would almost certainly get better and go back to my normal life at some point, even if this diagnosis really messed up my plans for 2016.

I never asked “why me?” After all, why not me? I believe we can learn from situations adverse and positive, but I do not believe that everything happens for a reason. Sometimes stuff just happens. You’ll make yourself mad trying to find a bigger purpose for it, a reason behind it. It just IS. That’s how I feel about getting cancer. I accepted that this was now part of my story. I didn’t like it. It wasn’t what I had planned for 2016 or any other year, but it was here and I had no real choice but to move forward into this new Dali-esque reality.

(This is the first of several posts about my cancer experience. Stay tuned for the next installment.)