Riding to Live - Stephen M. Henry's Story

At the ripe old age of 43, my doctor shattered my family's world with a simple, but difficult, pronouncement: "You have cancer." Then he proceeded to spell it out for me. The difficulty swallowing, the pain in my chest and under my ribs, my weight loss, all was part of the deadly mutant cells multiplying inside my body. I had Cancer of the Esophagus. However, this pronouncement had a far different effect on me than did a similar diagnosis a year earlier with not-so-drastic end results.

When I was diagnosed with Sarcoidosis, or Sarcoid Arthritis, a year before my cancer diagnosis, I felt like my life was ending. A "potentially" fatal from of arthritis, the differential diagnosis is based upon the presented symptoms and abnormal lymph nodes observed in chest x-rays. I quickly seized the opportunity to begin doing things that I had not done for quite some time, or never done and feared I'd never get the opportunity. Two weeks after the diagnosis of Sarcoid, I went downhill skiing for the first time in my life! That's a story all in itself, complete with anecdotal reruns of each and every moment of the day.

As Spring sprung here in the Willamette Valley last year, it came in earlier, drier, and warmer than usual. A long-time recreational cyclist, I missed the bike trails of Eugene, Oregon, but desired to get back on my bike and ride for the sheer pleasure of it. Soon I was tuning up my bicycle, longing to get out and explore some of the bike trails I had seen around the Portland suburb of Milwaukie where we lived. I quickly discovered one particular trail built over old railroad tracks that extended 20 miles east, ending at Boring, Oregon, where a trail looped back towards Portland for a round trip of about 45 miles. In the space of three months, I managed to put over 500 miles on my ancient Huffy Mountain Bike, most of them one day trips of over forty miles each.

I learned rapidly that the pain brought on by strenuous exercise was much preferable to the pain of arthritis that I suffered just sitting around. There was a deep satisfaction in pushing my failing body as hard as I could; knowing that it still worked for me.

I was seen by my "Arthur" doctor in late summer, 1998, and again in January, 1999. Both times she said there was "no evidence of disease" for Arthur, but that the pain and other symptoms could be masked by the low level doses of Prednisone I was still taking. She wanted me to discontinue the Prednisone and see her again when I had been off of it for a month.

By the end of January, I was off the Prednisone, and the story gets wild. I began having trouble swallowing solid food; each bite was felt when it hit bottom, and sometimes caused intense midsection pain while it hung there, waiting for some help going down. Eventually, it began to get serious enough that I considered going to a doctor, but figured it was related some way to my hiatal hernia and lifetime suffering of reflux and acid heartburn. Had I known then what I now know, I would not have put off the trip to the doctor!

About the middle of February, I began feeling sharp pains in my lower right side, just under my ribs. At times this pain was intense enough to cause me to gasp and grab my side, holding on to whatever was nearby until the pain passed. When these pains began to increase both in severity and frequency, I finally went to my internal medicine doctor for evaluation.

In his humble opinion, the pain that I suffered while swallowing was nothing; he presumed it to be severe heartburn, although I was on Tagamet and had been heartburn free for quite some time. I tried to tell him it was a very different pain than heartburn, but he insisted on simply doubling my Tagamet and telling me to return in four weeks if the pain persisted.

By midweek after seeing him, I was in severe distress. I decided I needed to be seen again right away after suffering a bout of chest and rib pain while at work and having co-workers and customers concerned that I was having a heart attack at my "young" age of 43. I immediately made an appointment to be seen the next day and was fortunate enough to get a different internal medicine doctor, since mine had no available appointments that day.

The new internal med doc was very concerned about the symptoms I presented, and correctly so, as it turned out. She ordered a barium swallow right away to see if my pain was related in any way to the hiatal hernia. Unfortunately, it was, but not in any way I expected to see.

The barium swallow showed a suspicious mass in the lower esophagus that severely restricted the swallowing. I remember seeing the pictures; there was a steady river of fluid that poured down my throat, then abruptly stopped and merely trickled through the blocked area, much as a river meeting a rock slide that has blocked the channel. This test was done on April Fools Day, 1999; the results didn't seem like a joke to me!

From there, tests and concern escalated. Every test that was ordered from then until we had a definitive diagnosis was marked "URGENT". The first test that confirmed suspicions was an endoscopy and biopsies. The GI doctor that performed the endoscopy had trouble getting the scope down through the solid mass of tumor to take pictures. Some of the pictures clearly show a Vicodin that I had taken for pain over eight hours earlier still stuck in the middle of the mass.

The biopsies were finally done, and the diagnosis was in: a poorly differentiated mass approximately 8 cm in length, or about the size of a man's fist, in the distal esophagus with adenocarcinoma, or Esophageal Cancer. The next test was a CT scan to check for metastasis to any other organs. Again, this test was marked "URGENT" and completed rapidly. The results were not encouraging; there were numerous mets to the liver, which was causing the chest and rib pain. At this point, I was told that my cancer was terminal and that I had only six months to a year to live. Most likely, given the advanced stage at which the diagnosis was made, I only had about six months. I needed to get my affairs in order. The technical terms were Esophageal Cancer, Stage IV, mets to the liver, no lymph node involvement.

Surgery was discussed; commonly, EC can be treated aggressively with surgery, chemo and/or radiation. If caught early enough, this treatment regimen can cure EC. However, due to my advanced Stage IV, surgery was out of the question. The only treatments to be offered were for palliative care only, to make my last days more livable. 

Between March and April, I lost considerable weight. I went from 210 pounds to a low of 154 in a matter of about 45 to 60 days, so nutrition and food intake became a concern. I was fitted with a feeding tube, inserted through my upper thoracic region directly into my stomach, through which I could receive liquid nutrients such as Boost, Ensure, or anything liquid and sustaining that I could tolerate.

I also consulted with my GI doctor concerning the placement of a stent; a hollow, expandable metal tube similar to a slinky that is placed inside the tumor and expands to maintain a passageway for food and liquids. Because I had not started chemotherapy yet, the GI doc advised waiting until after I was done with chemo. He informed me that if I had the stent placed, and the chemo successfully shrunk the tumor, the stent could slip and cause all kinds of complications. 

At this point I had not decided to fight the disease yet; I was content to let it run its course and take me home. I have been a Christian most of my life, and know that no one gets out of this life alive. My reaction to the doctors telling me that I was terminal was, "OK, I get to go home soon!" It wasn't until I began evaluating the effect my decision was having on loved ones that I decided it would be worth a fight. All through the process, though, my motto has been "I'm going to beat this thing if it KILLS me!" You see, I believe that if I live, I have more work to do, and I win. But if I die from this, I win BIG time; my family and friends will be the ones left to suffer, unfortunately.

So I opted to start chemotherapy. My first treatment was April 20, 1999, seemingly a lifetime after the diagnosis was originally received. However, there were numerous consults and other tests run during this period that precluded starting the chemo earlier.

They started me right out with the big guns of chemo; Cisplatin I.V., followed by a four day I.V. infusion of 5Fu from a fanny pack I wore day and night. Two weeks later, round two of the same drugs; and a third another two weeks after that. Then they extended my reprieve to three weeks, and another round.

My body did not tolerate the toxic cocktails very well; I immediately began violent vomiting after each treatment. There were a couple of treatments where I began vomiting before they even finished infusing me. Every anti emetic drug on the market was tried, most without success. Finally I had enough of being sick because of the chemo and emphatically told the doctors, "No mo' chemo!" My wish was their command, and my chemo was halted -- temporarily.

Throughout these first few months, I longed to be able to get on my bike and ride through it like I had the Sarcoidosis. However, my body simply refused to cooperate, even though my mind was screaming at me, "You were riding forty miles a day last year; what's WRONG with you?" I used the weather as a constant excuse; our Spring this year was very wet and cold, and I rightly deduced that I should avoid exposure to the elements at this time. However, the longing was very strong, and I finally signed on to a Cancer support group on the internet, Cyclists Combating Cancer. This is a group of very dedicated cyclists of all ages, sex, and abilities. The common threads running through the group is that everyone has a cancer, and all are avid cyclists.

I returned to my GI doctor to inquire about a stent again, since I felt I was through with chemo forever. He agreed to evaluate me, and we scheduled the procedure for a time when my wife could be with me for transportation purposes.

When I arrived for the procedure, we were pleasantly surprised when the doctor invited my wife, Lynette, to remain in the room and observe. Her later observations were invaluable to me. She said that the surprise and pleasure were very evident on the GI doc's face and in his voice. When he originally scoped me, besides the tumor, there was a large area of ulceration around the tumor. His findings with this scope, however, were very positive and encouraging. The tumor had shrunk about 70% and the ulceration had been healed! He recommended that I continue the chemo, since it seemed to be working so well, and forego the stent until I could no longer make progress against the tumor with chemo.

A follow-up CT scan was ordered for early August, and again the results were phenomenal. The scan confirmed what the endoscopy indicated; the tumor had been reduced by 70-80% and the mets to the liver had been reduced both in number and size, leaving just four very small 1 cm. lesions on the liver. No other spread or involvement of other organs was noted.

Amazed and buoyed by the news, I made another appointment to continue chemo. This time, I had more information about different chemo cocktails, and had found one that had limited nausea effects and was well tolerated by most of the people who received it. I asked if I could receive Carboplatin and Taxol, and, again, my wish was the doctor's command. Soon I was hooked up with the new cocktail, and tolerated it very well. The nausea and vomiting did occur, but usually 48 to 72 hours after treatment, and only lasting a day or so instead of a couple of weeks.

My energy level during the Carbo/Taxol stages was considerably higher than at any time during the Cis/5Fu treatments. I began to nurture hope that I might still get out and ride my bike sometime this summer. In early August, partially as a test, but mainly because I was simply feeling better, we took a week long camping trip to Coos Bay, Oregon. While there, I began to feel incredibly energized and ALIVE. One afternoon, we completed a short hike to Golden Falls, and I proceeded to rock climb up to the splash pool, some eighty feet above the trail. Coming back down to the trail head, I even raced my sixteen-year-old daughter a short distance. I felt GOOOD!

Returning home, I broke out the bike and began tuning it up in preparation for a few short rides. I began very small, taking a few five mile rides to see how I would tolerate it. Toleration was good, but I was still fatigued easily and dared not push it very far yet. That all changed the second week of September, 1999.

Because of the changes to my body from chemo, particularly what we refer to as "chemo brain", and the continued narcotic painkillers that I take daily, I decided to surrender my Oregon Drivers License. My driving had deteriorated to the point it scared even me, and rather than risk seriously injuring someone, I opted to remove the temptation of driving. It proved to be the motivation I needed to really get out on my bike and ride like I wanted!

Desiring to maintain my independence, I started riding again. With the weather cooperating, warm and dry, temperatures in the low to mid 80's, I began a series of short rides with my twelve-year-old son, Adam. I figured if he got tired, that would be an indication that I should probably head back, too. Our first ride together covered about eight miles of city streets at a very leisurely pace. My brain, though, was still cajoling me to ride harder, stronger.

So, Thursday I set off on a lone ride to see how far I could push it. I managed to turn in a respectable 15 miles, and thought that would be enough to satisfy my constantly pushy brain waves. Not so! Friday morning, I awoke energized and anxious for another ride. I set out again, and didn't stop until I'd gone 19 miles. Wow! Now I'm thinking that I'm almost up to half of a days ride for last year, so I must be making progress. Throughout my rides, Lance Armstrong and all my cycling buddies in CCC-NET are strong in my mind, pushing me to push my limits, stretch my endurance, regain my strength.

Saturday was the ultimate ride, though. I started planning it almost as soon as I completed my ride Friday, figuring I'd ride at least twenty miles to keep the distance end in a reasonable range. As soon as I got up Saturday and began making preparations, Adam wanted to know where I was going and how far. I asked him if he wanted to go on a twenty miler with me, and he only hesitated a moment before answering "Sure!"

We rode the short three miles to my wife's workplace on Jantzen Beach to let her know where we were going and what we were up to. My cell phone, which I never ride without, was at home with dead batteries; good old chemo brain forgot to plug it in the night before! I let Lynette know our proposed route, but had no idea of the time factor we would be looking at. 

Leaving Jantzen Beach, we crossed the I-5 bridge to Vancouver, Washington, where we turned east and followed the bike path along the Columbia River towards I-205. We eventually made the Glen Jackson bridge (I-205) with only a couple of small rest stops. After returning to the Oregon side of the river, we stopped at a Burger King restaurant for refreshments and a good rest. I figured if we could make it to a beach area across from the airport, that would be about 20 miles, and there should be a public phone to call for Mom to come pick us up. So we pumped on up Marine Drive to the beach area, but, NO PHONE! 

When we pulled in the parking lot at the beach, my odometer read 21.8 miles. So we relaxed on the rocks and sand for a half hour, then I asked Adam if he had a couple of miles left in him. He wanted to know why, so I told him we were only a couple of miles from Bob & Roxie's, an older Christian couple we have known for years and "adopted" as Grandma & Grandpa. If we could make it that far, we could sit in air-conditioned comfort and wait for Lynette. His answer was to pick up his bike and get ready to go! So we started toward Bob & Roxie's. 

Shortly after we headed out, Adam says, "So, Dad, what happens if Plan Bdoesn't work?"

I replied, "Plan C, of course!"

"Which is . . .?"

"There IS a phone at the Country Store by Bob & Roxie's!"

"Oh . . . OK!"

When we arrived at Bob & Roxie's, my odometer showed 24.9 miles; we call it 25 for the record!
Sunday, I took off and did not ride . . . for the most part. Adam and I took a short ride over to my sister Sue's to visit, a 5.2 mile round trip.

Monday, I had business I needed to take care of downtown, so I hopped on my bike, figuring I'd put it on Tri-Met, our metro bus service, for the ride home. It was so gorgeous out, though, I just ended up riding the whole round trip--16.5 miles Monday! Let's see, that's 80.5 miles in five days--about what I'd ride in two days last year! But of course, my body isn't what it was last year, either!

I feel particularly fortunate to have been able to enjoy these rides, and plan on continuing riding as my body tolerates it. After the improvements shown on the latest CT scans, I asked my Oncology doctor what my prognosis was now. She originally gave me six short months to live, and five were gone already. She simply smiled and said she thought I'd outlive the six month prognosis; beyond that, we'd just have to wait and see! 

Steve  Henry passed away on January 24, 2000