It wasn’t really a pain in the neck that led to my Hodgkin’s lymphoma diagnosis—not at first, although I do have a thin, almost unnoticeable scar from a surgical biopsy at the base of my neck. But “a pain in the left side of my chest near my top ribs” isn’t a very good blog title, so here we are. We know how the story ends—or how it is until this point—but here’s how it started.
On Friday, December 14, I noticed a weird bump in the left middle part of my chest when I got home from working out. I remember the date because not long after I noticed it, the Connecticut school shooting happened, making my bump seem insignificant. I’d felt a twinge in my chest for a few weeks prior, but I’d been working out a lot and taking part in a fitness challenge. I’d also carried a giant, heavy box about eight blocks from my post office box to my home office and the twinge intensified.
I did some internet searching, and after self-diagnosing myself with a torn muscle, made an appointment with a sports medicine doctor who had seen me earlier for hip bursitis. That Monday, the doctor told me I had dislocated my first and second ribs—a very rare injury, but after telling him about the box and soreness, he figured I had a hypermobility issue. An X-ray confirmed my dislocated ribs, and the doctor decided to try to manipulate the rib back over a series of appointments, coupled with physical therapy.
I should also note that I have a family history of freak ribs—my dad claimed to have extra ribs in his upper chest that bothered him when he ran and my grandma’s lower ribs would shift sometimes when she did yardwork before eventually popping back into place on their own. I myself have an extra lower rib on my left side—a spare rib, if you will.
An aside: If there’s an assembly line somewhere that puts people together, the person working on the left side that day was probably let go soon after the fall of 1977. My left ear is different from my right one, as if I have ears from two different people. I really wouldn’t be surprised if everyone born within seconds of my birth all have mismatched ears and if someone was missing a rib on the left. I digress, but the point is, I wasn’t all that surprised to have bum ribs on the left.
Right before New Year’s Eve, I noticed a reddish spot where the twinge of pain had started. My doctor was concerned and said we should keep an eye on it. Meanwhile, I went to weekly physical therapy sessions and the doctor tried to manipulate the ribs back into place. I had to stop fitness boot camp and most forms of yoga, to avoid putting pressure on my ribs and upper chest, so I stuck to Bikram yoga and a cardio kickboxing class.
My left side was sore, and even when I tried to stay mobile by working out and doing my physical therapy exercises, I still felt stiff and in pain. One day, the physical therapist noticed a big bump in my neck. Meanwhile, my weird chest rash expanded. By late January, every time my ribs seemed to be making progress, at my next appointment, I seemed to be back at square one.
By this time, I was having burning pains in my chest and moving my left arm was becoming increasingly difficult. I was really starting to worry but tried to stay upbeat. My friends and I made lighthearted jokes about the possibility of an evil twin trying to claw its way out, because that’s what it looked like. The rash now looked angry, with a few blood vessels red and highlighted, and the bump seemed to be growing.
This is the point in the story that’s like the scene of the teenagers making out in a remote spot or the weekend campers going out into the woods to look for the source of mysterious noises while the scaredy-cat stays behind at the cabin to become the first victim. How could I not know it was Hodgkin’s lymphoma?
The dislocated ribs theory really made sense. And even after internet searches, cancer still didn’t seem like a possibility. I didn’t have any of the other symptoms—the weight loss or night sweats, though the latter happened later, after my diagnosis.
The last reason is that my concerns were dismissed by several other doctors. I asked my dermatologist about the rash, and he said it was probably just bruising from the rib injury. In late January, after a month of no progress, the sports medicine doctor was increasingly worried and said this honestly was out of his realm of specialty and urged me to see my primary care physician for bloodwork. I finally met the doctor I’d been listing as my primary care physician for years; I’d always seen the other doctor in his office. This doctor was arrogant and condescending and dismissed my rash as a nickel allergy and wouldn’t listen to any of my concerns. When he examined me, he pressed really hard on my ribs, an area that had become increasingly painful. (Another red flag, I know, I know.)
After reading the stories of others, it still seems that time and time again, if you’re young, cancer just isn’t considered as a possible diagnosis—even a young person’s cancer like Hodgkin’s lymphoma. There still seems to be a false belief that you can be too young or too healthy for cancer, even though we’ve seen perfectly healthy public figures like Lance Armstrong deal with cancer.
By this time, the sports medicine doctor sent me for a CT scan to see what else could be going on, and it showed that my lymph nodes were inflamed. In fact, my swollen lymph nodes were what pushed out my ribs. Around this time, my bloodwork came back, and I had an elevated white blood cell count—mostly neutrophils—and a high platelet count. I received an apologetic call from my primary care physician, who is now my former primary care physician. I told him that I already had an appointment with a head and neck specialist, a highly respected doctor recommended by the sports medicine guy.
Over the course of three appointments, I probably spent about five hours in this new doctor’s depressing underground waiting room, while some patients simply nodded off into sleep because of the wait. I received two notices on my insurance explanation of benefits that he charged me for surgery for otolaryngoscopies he did not perform. After calling his office repeatedly to question this, I have never received a bill for my portion, though my insurance company paid for some of the imaginary procedures.
Shadiness aside, he did send me for a needle biopsy, where you lie still and they poke you with a thin needle. This doctor was one of those doctors who talk about the patient like you’re not there. The needle biopsy itself was fine, the second worst part was lying still. The worst part was the doctor casually mentioning to his colleagues that it looked like Hodgkin’s lymphoma while I lay there unable to move with a needle in my neck. A few tears rolled down my face sideways, but I stayed completely still. When I asked the doctor directly what could be wrong, he said he couldn’t tell me.
After the day the results were supposed to be ready came and went, I called and was dismissed again—they would call me when the results were ready. After another day, I called again and they discovered they misfiled my results. By the time it was sent to the doctor, his office was closed for the weekend and he wouldn’t be back until Tuesday. I had the results sent to the sports medicine doctor, who would be in on Monday at least.
I had mixed feelings about the extended wait. Part of me wanted to know, another part was almost grateful for the period of not knowing, in case it was bad news. I frantically worked on a freelance writing assignment and work that weekend to make sure that it was finished before Monday.
I had just completed editing a piece on Golden Globes fashion when I got a call from the doctor’s office. He wanted to see me right away, and even though he was booked with appointments, I could come in whenever I had time. Doctors usually don’t make you come in for a visit to tell you good news. Still, I hoped maybe he was going to tell me what you always kind of hope to hear, something along the lines of, “You were very right to come in and are not a hypochondriac, and luckily, we have this magic pill with no side effects that can cure you right away.”
My boyfriend went with me and sat in the waiting room as the doctor told me that the biopsy showed I had Hodgkin’s lymphoma. Afterwards, I walked into the waiting room, collected my boyfriend and stepped into a crowded elevator where I couldn’t say a word. Finally, when we reached the street, I told him. Though it always seems impossible to have any privacy in Manhattan when you need it, there’s at least that faux-privacy of a crowded sidewalk, where everyone’s too busy and hurried and self-absorbed to notice your own personal traumas.
We sat stunned on the train home. I couldn’t think of anything more depressing than going home and doing internet searches of my newfound disease, so I went to a bar instead. After what seemed to be an emotional sucker punch, it felt right to have a happy hour beer and eat a bowl of free bar snacks. The diagnosis hung in the air and made things weird and I wanted things to be normal again. For the most part, thankfully, it has been.
I saw the head and neck doctor the next day, after a three-hour wait. He asked me if the antibiotics he prescribed had helped. I said that they don’t cure cancer, to my knowledge. I didn’t take his recommendation for an oncologist because I wanted to stop the chain of doctors I didn’t like. He kind of discouraged me from going to Memorial Sloan-Kettering, where he’s also (inexplicably) highly regarded, so we made an appointment there.
I don’t want to sound bitter about any of this experience. Even though I was unhappy with the way some things were handled, I did get a correct diagnosis. And I’m grateful that at least one doctor took me seriously and took action when everyone else—myself included—assumed that this bump was no big deal. Right now, I’m in my third cycle of chemotherapy, between treatments five and six.
The uncertainty of not knowing has passed. The confusion of odd pains has at least cleared. Once the initial shock of hearing one of the most dreaded phrases—“you have cancer”—fades, you pull yourself together and get down to the business of getting better.