Marc's Esophageal Cancer Story

diagnosis | surgery | chemo & rad | afterward | resources

afterward - until march 2000

The amazing thing about having completed the three levels of hell, is that the fourth level is the day to day uncertainty that you've won.

I marked off checkups on my calendar as if they were major world events.

I lost about 40 pounds from my pre surgical weight of 205 lbs. I'm now somewhere around 165 pounds on any given day, and can't seem to put on any more weight no matter what I do.

Because the anastomosis is a nice circular joint, prone to scaring, dilations are not unusual. Since my surgery I had about 2 dilations performed each year until 2002, when it appeared that my anastomosis had finally given up on its attempts to harass me. Rigid dilations are slightly less pleasant than balloon dilations, but are effective longer, for what that's worth. If you have a bad experience with a dilation, make certain that your gastroenterologist administers sufficient Versed or Demerol before the procedure. I only had one bad experience. The rest have all resulted in funny stories about how cognizant I was as I came around afterward.

One mystery that I encountered about a year out, was an auto immune disorder that began about the same time as the radiation pneumonitis. This manifested itself as a wandering, debilitating joint pain. One day an elbow, the next my hands, then both, sometimes a knee or hip. This went on for more than a year, and allowed me to win a game of "Stump the Doctor" with an excellent local rheumatologist. The doctors at Mayo were equally baffled. In the end we all chalked it up to a side effect of my cancer treatments. Maybe it was good for me? Who know if my immune system, in attacking me, wasn't also wiping out nasties at the same time.

When I met with Dr. Goldberg in April, 1997, I was asked if I wanted to go to a yearly checkup. I was still chicken, so I kept a six-month (or so) cycle for the near future. Regardless, after my checkup in October of that year, I exchanged some email with Dr. Goldberg. This is an excerpt from his reply to me:

Like you I am delighted with your progress so far and hopeful
that we may be able to use the word cure at some point soon.

Then when I went back for my checkup in May, 1998 we had a scare... Although the blood tests were all normal, two "pea sized" spots showed up clearly in the lower lobe of my right lung. I stayed in Rochester long enough to have a CT-guided needle biopsy performed, and when we went back two days later we began yet another round of the all too familiar game of "stump the doctor". The samples all were normal lung tissue, with no evidence of cancer or anything else for that matter.  This only marginally cheered me, and while it still meant that I was technically disease free, it did give me reality check on taking things for granted.

Three more checkups took me to September, 1999... over 4-1/2 years post surgery and all was still fine with me. Test results were "Negative and stable"... the spots in my right lung are stable, and all cancer  markers are negative, although I had lost some more weight (down to 160 pounds) and was looking a bit anorexic

Tammy promised that if I made five years, the point where "cure" is the operative word, I could get a Mercedes. Our trip to Mayo in March of 2000 was in my "new" 1995 E320, and when I saw Dr. Goldberg I simply said that I wanted to hear some reference to me and the word "cured" in the same sentence. He replied, smiling:

Well, your cured, I hope.

As another EC patient believed, I too believe that "Attitude IS everything!"

There are a lot of things that you have to learn to cope with after going through the recovery process. Eating small meals all day long, learning what triggers dumping syndrome, accepting that 85 percent of what you can do is "OK."

The bottom line is this, I'm still alive today, and will be tomorrow... this beats the alternative hands down!

My oncologist did have some bad news for me in 2003... He'd accepted a position as head of a new cancer center at the University of North Carolina and was leaving Mayo. This was quite a surprise for Tammy and I, as our yearly trips to Rochester had become like pilgrimages to Oz. We left Toto home.

Rather than break in a new medonc, Dr. Goldberg and I decided that it was probably a good time to get on with life. I recounted his words when I hit five years, and he smiled and said:

Well, your cured, for sure!

Thank you Dr. Goldberg, and best wishes in your new journey!

Where Credit is Due...

I'd be a real heel if I neglected to mention that my absolute best friend in the whole world was with me daily through this whole adventure. Tammy was there in Rochester for all three weeks of the chemo, forcing me to eat, and carting me back to the oncology nurses when one after another anti nausea medication failed me. She learned about caring for PICC lines, and made my favorite puddings when that was all I could keep down. She kept track of everything I ate in an attempt to get 1500 calories a day into me when I was happy with 6 and made special excursions to the store in an effort to tempt me to eat. She was a rock when I needed one so much, putting my care ahead of everything else in her life. Tammy and I share a special bond that has only grown stronger as a result of this trial. I'm working like hell to beat The Beast because I don't want to leave her for anything in the world! I also have two more girls to walk down the aisle. Tammy, I kept my promise to beat this damned disease!

I also owe my life to the skill and knowledge of my Doctors: Dr. Ponci in Wisconsin Rapids, Wisconsin, who nailed the diagnosis in a matter of days. Dr. Lin in Marshfield, Wisconsin, who kept me upbeat while I was evaluating my options during the "panic days". Drs. Goldberg, Gunderson and Trastek in Rochester, Minnesota (4), who performed more than enough magic to keep me not only in the protocol but still cancer free today! Last, the unsung heroes at Mayo are the oncology nurses who worked like hell to make me feel as comfortable as possible during "frying pan" period! Thank you all!

And to Tammy and our parents, for helping to make my Mercedes a real goal...
All my love!
-- Marc Wolfgram

diagnosis | surgery | chemo & rad | afterward | resources

Photo: Marc's Five Year Mercedes, March 2000 - It rolled out of Stuttgart while I was going through my treatment!

4 - Drs. Gunderson, Goldberg and Trastek are no longer in Rochester. A few years ago Dr. Trastek transferred to the Mayo Clinic in Scottsdale, AZ, to help establish the multi-department team approach that works so well in Rochester. Later, Dr. Gunderson also went to Scottsdale, where I'm certain the quality of care has only improved.

When I hit five years Dr. Goldberg said we can shake hands and say goodbye, or I can come back yearly for checkups. I did this through March 2003. In June 2003 he left Mayo to head a cancer center at UNC Chapel Hill.