The Fear Never Goes Away. That’s By Choice.
It’s been more than 21 years since I was first told I had cancer and nearly 20 years since I last got into remission. But cancer still haunts me. The thought of it returning terrifies me.
Maybe it wouldn’t be so scary if it hadn’t nearly killed me and it killed my brother. Cancer wouldn’t be such a boogeyman if it hadn’t dominated my life for about five years and a respected specialist at a world-famous cancer center (not Abramson) hadn’t told me, wrongly, that I was terminally ill and should give up trying to be cured at the ripe old age of 37.
I experienced first-hand what cancer can do when it nearly kills you. Because of my brother, I witnessed what it does when it actually does kill someone.
I had Hodgkin’s lymphoma. It develops when a cell that’s part of your lymph system (including lymph glands or nodes), which is part of your immune system, turns malignant. Instead of these cells trying to keep you alive, they become rapidly reproducing parasites, sucking the life out of you.
When I Hear Potentially Bad Cancer News, I Dwell on the Worst-Case Scenario
If you’re told by a doctor that you may have cancer, maybe you try to put it out of your mind, assume “it will all work out,” keep yourself busy, or trust a higher power will protect you. That may work for you, it doesn’t for me.
I’m a curious, game-planning, defensive pessimist, according to a New York Times article. I’ve always been curious about other people, how things work, and why things are the way they are. I was a reporter and lawyer, and now I’m a writer, and you can’t do any of those things well without curiosity. If bad news might be on the horizon, I’ll find out all the things that could happen and how. Why?
So I can game-plan. If this or that happens, what can I do about it? What will my options be? What will I need to do to make the best of the situation? I’m someone who enjoys the illusion he’s in control of his life, so I want to make sure I can maintain that illusion if my health goes sideways.
Game-planning is what you do as an attorney. Your client wants to do X. How do you accomplish this? If you take option A and it fails, what’s next? Will there be options B and C? You try to choose the most successful path, and a “do or die” choice without options will fail your client if things don’t go your way.
I dig myself a deep emotional hole and cover myself in fear. I relive my past treatment traumas and imagine new ones. I’m distracted during the day and sleepless at night. I’m wound up like a spring and with some exceptions, miserable. Why?
The Upside of Focusing on the Downside
I’ve had my share of bad news during treatment. You must be able to handle it and make informed decisions. If you’ve convinced yourself there won’t be bad news or you’re somehow protected from it, you risk getting crushed by it. As the Times article states, “(Defensive pessimists) dive into the worry maelstrom, surfacing with contingency plans.”
A study of law students waiting for bar exam results showed keeping yourself busy wasn’t an effective long-term approach to fearing the unknown. There were also those who assumed the best and wouldn’t think about the worst and the defensive pessimists.
One researcher suggested people facing uncertainty set their expectations low and think through the negative possibilities. Optimist friends and family members will think you’re crazy, but it shifts your attention away from anxiety to thinking about how to cope with the disaster that might happen.
When the bar exam results came out, the worriers did great. If they failed, they had productive, reasonable responses. If they passed, they were elated. Those who breezed through the waiting period were shattered and paralyzed by the bad news. If the news was good, it wasn’t a big deal.
Anxiety, though it feels bad, is not bad to feel if you leverage it to plan and prepare for a reality you don’t want. Fearing the future can feel soul-crushing, but getting good news afterward can be a flood of joy. The room is brighter and a heavy, self-imposed weight is lifted off your shoulders. Life, instead of being a bitter cup of poison, is a milkshake big enough to dive into.
Are Those Glands in Your Neck or Hand Grenades?
In the past twenty years, I’ve had a couple cancer scares. They’re the result of well-meaning but ultimately ignorant doctors trying to do the right thing. Some time ago my dental practice, as part of doing cleanings, looked for cancer in their patients.
My dentist, groping my neck, said I had the biggest lymph glands she’d ever felt. Enlarged glands are a symptom of Hodgkin lymphoma because this is where these rogue white cells congregate. I ended up with yet another CT scan (I’ve lost count of how many I’ve had) and an unexpected visit to my hematologist who previously gave me a clean bill of health. He gave me the good news I didn’t have Hodgkin’s.
Hypercalcemia – The Gateway Down the Rabbit Hole
Earlier this year I was back in my personal house of horrors. Thanks to blood tests from an annual checkup, I appear to be hypercalcemic (too much calcium in my blood). As I understand it, that means something is pulling calcium out of my bones. Usually, it’s caused by a malfunctioning parathyroid gland, but it could be the result of multiple myeloma, the cancer that killed my brother.
Multiple myeloma is a cancer of the bone marrow. Over time, it makes a mess of your blood and bone marrow, including the cells keeping your bones healthy. As it progresses the bones weaken, leaking calcium into your blood. Some people are diagnosed after their bones break. My general practitioner and I had a long discussion about how I may have the cancer that aged my brother 50 years in the span of two.
Next? Off to the specialists. My endocrinologist (who works with people with parathyroid problems) and I had another discussion about multiple myeloma. She ordered a test to see if I had a certain protein, which she said could be evidence of the disease at work.
I went home, logged in to my “patient portal,” and printed off blood test results she said she didn’t have, including the one showing I was negative for that protein.
Take My Wife…Please!
The next day I saw a hematologist/oncologist who works for Abramson at their Langhorne office. He’s a loud talker with the verbal cadence of a stand-up comedian. Slow, deliberate words, dramatic pauses, then words rapidly come out like they’re falling down a hill.
This was the appointment I’d been waiting for. Within moments, he told me I didn’t have multiple myeloma. He said the one test result didn’t mean much, other test results were contrary to multiple myeloma, and numerous other things were or weren’t going on, showing I didn’t have the disease.
It was refreshing to talk to a doctor with answers, not just questions. To put the final nails in the multiple myeloma coffin, he ordered another test and x-rays. The test was negative and my bones aren’t falling apart (always a good thing).
Compare and Contrast
I was sick for two years before I was diagnosed with Hodgkin’s in 2000. The general practitioners I saw assumed I had generic viral infections (due to my high fevers, night sweats, with uncontrollable coughing and itchy skin later added to the mix) or admitted they didn’t know what the problem was, then sent me on my way.
After two years, my body shut down. Fevers that came and went came and stayed. I couldn’t work for three months. My unsuccessful pneumonia treatment led me to a chest specialist who, with the help of a full-body CT scan and a discussion with the radiologist interpreting it, thought the problem was lymphoma. A biopsy later confirmed it was Hodgkin’s.
Though my current general practitioner and my endocrinologist sent me down a stress-filled road to nowhere, they were well-intentioned and proactive. I may have had something deadly, they told me, and we had to find out if I did or not. Twenty years ago, for the most part, I got shrugged shoulders and was told to go home. Given the choice between false alarms and progressing cancer, I’ll choose incorrect but scary news and my internal panic room. Thankfully, my visits there are short.
Rodney Warner is a freelance writer, cancer survivor, and cancerphobe. www.rodneywarner.net