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December 16, 2004

Popping Cancer, prehistory

The first time I had cancer, it was bad. Very bad.

I was 18 and on summer vacation from classes at Old Dominion University (Go Blue!). I had what I thought was a simple sore throat and cold, and since my mother was a teacher changing jobs over the summer, I didn't go see the doctor because we didn't have health insurance until August.

Of course, it was Hodgkin's disease, which progressed until my neck size grew two inches because of the size of my growing lymph nodes. The lymph nodes on my chest got so large that when I tried to sleep on my back, I couldn't breathe. One memorable day, my buddy Scott and I went to play tennis and simply holding up the racquet tired me out, let alone hitting the ball back.

That same night I went, without insurance, to see the doctor. The next morning I was in a hospital bed. There are fun stories about how my family took the news, the way the over-booked hospital accidentally put me in a hospice room at first and the horrifying antics that occurred as a result, my first treatments, the lady from church who suggested I search my life for whatever sin made God give me cancer as a punishment, some practical jokes (the old "dumping apple juice in the urine specimin" joke never got old), a few near-death experiences and some of the people I met along the way (along with some of their funerals), but those can mostly wait for future posts.

I mention my treatment history only to give context to the actual danger that ANY treatment will pose for me in the coming months. From the time I was 18 until I was 25 I did the maximum "safe" amount of radiation allowable, years and years of chemotherapy and followed the whole ordeal up with a bone marrow transplant, which I just barely survived and is worth its own series of posts sometime near Halloween.

If it helps give context to the possibly unprecedented amount of treatment I have received, my doctor showed me a chart once. This doctor, Dr. Yanovich, is one of the leading cancer research doctors on the East Coast and it is partially because I survived so much treatment that he agreed to see me in the first place. The chart came about because I asked him what the standard course of treatment for people in my position was. He said there was no standard course of treatment, because everyone who had ever had as much treatment as I had was dead. Sure enough, I was off the actual chart when he showed it to me. I was somewhere about two inches off the top corner of the page, as a matter of fact.

I should have known there was something a bit unusual about me as a patient because every day on rounds, Dr. Yanovich would have with him 6-10 med students and, occasionally, visiting doctors. They would all examine me and linger over my chart.

Later, another doctor told me I was a study case simply because I was too stubborn to die. That's the only explanation they had for my continued breathing and moving. My current oncologist said they were studying me because I had "the power of faith," which he defined as an unknowable quality that gives some people the strength to live when they should be long dead. Doctors know it exists, and when they find it they want to study it, hence the parade of students.

Looking back, maybe it was faith. As a pastor, I'd love to claim it was faith. Really, it just felt like stubborn-ness. I just woke up every morning, especially in the bone marrow transplant days, and told myself I only had to make it through the one day, or in some cases, the one hour. I knew death was a real option and on more than one occasion during the high-dosage chemotherapy week of the transplant, I knew I could internally relax my fighting and die as a way out. I could have conciously given up and died, in other words.

I didn't really have any particular desire to live, just a daily stubborn-ness. My calling as a critical care chaplain started to rear its head during this time as well, as I began to see other patients around me, but that too is another post for another day. The point today is that you can do a lot of things you'd never think possible if you're just too thick-headed to give up.

The other point is that I'm scared of ANY treatment at this point. Any more radiation is even further off the chart and potentially fatal. I can't imagine they'd do more radiation as anything but a last resort. Chemotherapy might be only slightly less potentially fatal. The drug they would want to use is the one that damaged my heart (*see last cancer post) and my lungs.

Maybe this specialist I'm seeing Monday in Cleveland can come up with something else. The moral for the day, though, is that it's ok to be scared sometimes. We get this crazy idea that we have to "be strong for the family." Why? Why do we have to hide what we all feel anyway? What would happen if our family or our church or our friends saw us as a real human being who was scared to die? Who didn't want to feel pain?

And that bit about "protecting the children" is also bunk. What we're really doing when we say we're trying to protect others is trying to protect ourselves. We're scared to FEEL things, especially uncomfortable things, so we don't tell the kids, we don't share our feelings and, very often, we die in our shells. Kids know; our family knows. Hiding emotions doesn't make them go away. Nothing you hold back from loved ones makes cancer any better.

It's especially horrific when parents don't tell kids when it's the kid himself/herself that is sick. Ugh. KIDS KNOW. They know they're sick. They see the way people act differently around them. Kids are resiliant and strong and adaptable and when you say you're "protecting them," what you're doing is trying to protect yourself. All the secrecy does is add layers of anxiety to a kid's already confused thoughts.

All that is to say that whereever you are in your life, it's okay to feel what you feel. In this case, I have legitimate concerns about any potential treatment, and as I approach a meeting that will help guide our response to this latest threat, I know about myself that parts of me are afraid. This is who I am right now. I'm not a lump of horrified jelly, but parts of me are scared.

Feels better to give myself permission to feel that way.

Posted by Dan at December 16, 2004 09:57 AM

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