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Childhood cancer scare affects man's reaction to lymphoma symptoms as an adult

By Keith Collins
Tuesday, July 20, 2010; HE01

When I was around 10 years old, I found some strange lumps in a place where no one wants to find strange lumps. They turned out to be little nodes that are actually supposed to be there. They're like sidekicks for your testicles or something and, well, I really don't know what they are. I just know they're normal. As a young boy discovering them while lying in bed, though, I was scared to death. I was convinced I had cancer.

This was not the kind of situation I managed well. I was a kid who would rather find a way around problems than deal with them. I didn't like the idea of talking to my parents about my genitals much more than I liked waiting for what would surely be a slow, painful death. To me, the clear solution to this particular problem was time travel.

I had, of course, seen "Back to the Future Part II" and "Bill & Ted's Excellent Adventure," and while I understood that time travel was not yet possible, I figured it would be only a few years until it was, and then my future self could rescue me.

I started writing letters to Future Keith. "When you get a time machine, don't forget to come get me. I'll be in my room." And while he was delivering the cure for cancer, I asked, would it be possible to please bring along a hover board and a pair of those radical Nikes that tie themselves?

I hid the letters in places that had the structural integrity to last into the future: a shoebox in my closet and a Tupperware container in the basement. Then I waited for a silver car or phone booth to flash into my room.

Nothing happened. I waited and waited, but I was stuck in 1990 with my bullying brothers and dimwitted schoolteachers and a disease that was surely growing beneath my Spider-Man underwear.

Finally, after days of agony, my fear outweighed my embarrassment. I walked up to my mother and said, "Mom, I have bumps on my balls."

I cannot remember her response. My mind has placed any memory of the conversation into the bottom drawer of my subconscious. I imagine she burst into tears. And I imagine my buzz-killing father came home, explained about how testicles have sidekicks and assured both of us that I didn't have a fatal disease.

All I know for sure is that I'd needlessly informed my mother that I had spent some time checking out my private parts.

16 years later

Such an event can set precedents in your life. Every time you look at that one mole and worry for a moment that you have skin cancer, you remember the mistake you made when you were 10.

In August 2006, I found a painless lump at the base of my neck. It lived there in my neck for some time, mocking me, waiting for me to take it too seriously and embarrass myself again. Every week or two, I'd look at it and decide it was leftover swelling from a cold. Allergies. Whatever.

Some time later, I began waking up to serious pain in my knee. It didn't occur to me that the pain might be connected to the lump in my neck. I'd show up at work limping and would explain to my co-workers that, at 27, I was probably just getting old.

When the pain started switching knees I became a bit more curious. Once it moved up to my hips and went from uncomfortable to excruciating, I decided to do something about it. I went right ahead and made a note on my calendar for the next month: "See if you have cancer."

Notice that even at 27, I was still writing little letters to the future. I wanted Next Month Keith to solve this problem the same way I had wanted my future self to save me from testicular cancer when I was 10.

In the weeks before I saw a doctor, the pain traveled from my knees to my hips and back, and my limping became too obvious to hide. Everyone around me suddenly turned into a medical expert.

For example, one day as I poured a liberal dose of Frank's RedHot into a bowl of mac and cheese, my dad offered, "Maybe it's all that hot sauce."

My boss suggested that I exercise more.

Lots of people were inexplicably yet enthusiastically convinced I had Lyme disease.

When I finally made it to a doctor's appointment, I described the joint issue to him at length. When it had started, which joints were affected, how long the pain lasted. That went on for about 45 minutes. He, too, suggested Lyme disease.

Then I told him about the lump in my neck. I'd hesitated to even mention it. But it seemed to alarm him more than I expected. He explained that it was an enlarged lymph node and what that kind of meant. He wrote a referral to a surgical oncologist. For the joint pain, I got blood tests.

Two or three days later, the doctor called back with the blood-test results. No Lyme disease. No arthritis. No discernible autoimmune disease. Nothing. What they did find out is that at some point in my life, I had had mononucleosis. Mono, the kissing disease. No surprises there.

"Get an appointment with the surgical oncologist as soon as possible," the doctor said. "Let's rule out lymphoma and go from there." I remembered my 10-year-old self. I can't say honestly that I was very concerned.

False alarm?

A few weeks later, in November 2006, I saw the surgical oncologist. He was only vaguely troubled by the lump in my neck. He examined my armpits and pelvis for more swollen nodes, which would have been worrisome. But he found nothing and decided there was no need to biopsy anything right away. He asked me to wait a couple of months and see if the size of the lymph node changed at all. I knew it: false alarm. Just like when I was 10.

He gave me a prescription for an ultrasound, but I didn't quite understand why, so I let it go. I had painkillers and anti-inflammatory drugs, and, for a while, my joint problems decreased. At any sign of upcoming pain, I popped pills. I had more trouble than usual finding the energy to go to work, but decided I was just not sleeping well enough and had to adjust.

On the morning of April 2, 2007, my wrist was killing me. It had been killing me for a week. I was out of meds and realized that for some time the pain had been moving to new joints. I'd also been experiencing random fevers and night sweats. I had done some low-grade research and knew these were symptoms of lymphoma.

Until that morning, I'd been unable to reconcile my belief that I was a healthy young man with the fact that my symptoms were getting more severe each day. But suddenly I was scared. I probably even checked my testicles for lumps, just in case. I called my doctor. Six months after my first visit, I returned and told him about the new symptoms.

He ordered a CT scan and insisted I get the ultrasound that had already been prescribed. He gave me a new prescription for pain meds. Still holding out for some kind of infection or even a rare form of arthritis, he also ordered another load of blood tests and X-rays, and said I should see a rheumatologist.

I made an appointment to finally have the lump biopsied and scheduled the ultrasound and CT scan immediately. The blood test and X-ray orders went unfilled: I was interested only in tests that would show whether or not I had cancer. I went to the ultrasound alone and broke into a fever and chills, which had become a regular thing.

Before the CT scan, I had to drink about a half-gallon of barium. I chugged it. I was then led into a room with a complicated-looking machine and informed that I was going to be set up with an IV catheter so I could be injected with iodine. Needles and catheters and general pain scared me. It must have shown, because the nurse tried to calm me down while she inserted the needle, but her first attempt failed and the IV would not stay in my vein.

At the end of that week, on Friday, April 13, my doctor called with new urgency. He told me to leave work and go immediately to the surgical oncologist, who had bumped up my biopsy appointment and would be expecting me. I hung up and walked outside. I sat on a chair on the side of the building and put my head in my hands and cried harder than I ever had in my adult life.

On April 24, eight months after first discovering the lump in my neck and remembering the lumps on my balls, I finally got my diagnosis.

I had stage IV Hodgkin's lymphoma.

Collins is a writer and journalism student from Philadelphia.

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