My Story

Simple Rules when faced with adversity.

Appreciate what you have. In my case, a great spouse, spectacular kids, a supportive family, a good job and the all-important health insurance. (Thank-you Blue Cross and Blue Shield!)

There are no promises about the future. None of use knows what the next hour, day or week holds. Don’t waste time!

You MUST be your own strong advocate for your health care, or you can call my wife and have her do it for you. (She is really, really good!) You must question and have questions for your Doctors and treating health care professionals. Question everything and speak up for yourself.

There are many random acts of kindness that go un-noticed every day. Notice them. Take pleasure in them, savor them.

We are surrounded by survivors. After I was diagnosed the number of people who shared with me their own struggle with a serious or chronic illness including cancer was startling. We are never alone in our struggles.

In November of 2005 I discovered two sore, achy lumps under my left arm. I have had the same doctor for more than 22 years. He saw me within a day, poked my lumps and excused himself. When he returned he told me he didn’t like the look of the lumps and asked that I see a surgeon and arrange for a biopsy. I agreed and asked for the name and number of a surgeon that he trusted. My first “uh-oh” moment came when my doctor informed me that he had already called the surgeon and that he was waiting across the street to see me.

The surgeon saw me immediately and agreed that a biopsy was appropriate. He was heading out of town, but thought he’d better squeeze me in before he left, another “uh-oh” moment. I had the biopsy three days later. After the surgery, the surgeon talked with my wife and me. He told us about the lymph nodes that had been removed, described their condition and consistency and told us that he did not think that there was any problem, the nodes seemed normal. Wow, what a relief! My wife and I went to my daughter’s high school field hockey game, and had a great weekend.

The following Tuesday in the late afternoon, my doctor called me on my cell phone.  If a doctor has no news or good news he or she will give it to you over the phone. If your physician has bad news, they want to tell you in person. My doctor asked if I could come by his office to talk. Since I could not get back downtown that day, he asked if he could call me at home later in the evening. That evening, as we set the table and prepared for the evening meal, my doctor called. I took the phone and headed out onto the deck for privacy. He told me that there was a 30% chance that I had mono, and a 70 % chance that I had cancer. My life changed.

A few days later, on Friday, a day the oncologist usually did not see patients (uh-oh) my wife and I met the oncologist.  Denial is a powerful, and on occasion a wonderful thing. As we waited in the very busy reception room I actually said to my wife that I was still hoping for mono. She looked at me with patience and amazement and said, “We are waiting to see an oncologist, it is not mono”. That meeting was a complete blur. My wife took notes and asked most of the questions. I was in shock. So it began, bone marrow sampling, pet scans (positron emission tomography), ct scans (computerized axial tomography), all part of staging cancer.

The initial treatment consisted of six rounds of chemo, one round every 21 days. For five days after the chemo day I took anti-nausea medication and a steroid pill. For those five days I barely slept. I took to walking the streets of our town for hours at a time (the dog was the happiest she has ever been!). I was moody, becoming sad, agitated, or hostile very quickly. I like to think that it was mostly the large dose of steroids. But in truth, I was grieving, everything had changed!

I started chemo just before Thanksgiving of 2005. At the Family Thanksgiving Dinner my step-brother showed up with his head shaved! He shaved his head to show his support, it still makes my cry when I think of it.

My hair fell out on Saturday December 11th, just about 14 days after my first round of chemo and on the day of my then 8 year old son’s birthday party with 10 of his buddies at Laser Tag! My wife had arranged with Debbie, the woman who cuts her and the kid’s hair, to shave my head when the time came. At about 5:00 on a Saturday night when she was supposed to be at a Christmas party, Debbie stayed home late to shave my head. This was one of many acts of kindness and generosity that I remember so fondly and cherish.

In truth, not having hair wasn’t so bad. Showers were fast, drying was easy. I never woke up with bed head and I had an excuse to get rid of the mustache that I’d had since college.

Living with a chronic and incurable form of cancer changes your life. Savor what is good.

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