Faces of H.O.P.E.

Bill's battle with the beast
(Submitted by Bill Ross in 2005)

I have always been a procrastinator... You know... the kind of person who puts off today what can be done tomorrow. Yep... That's me in a nutshell. Who knew it would end up causing me to fight the largest battle of my life?

It all had started with the longest war with heartburn I ever had. Day in and day out I was popping those little pastel colored confections, and taking any over the counter remedy I could find to ward off the hell fires burning inside. Than as if things weren't bad enough, it stared waking me up at night. But, like I said before  why bother dealing with this today when I can deal with it tomorrow? At least that's what I thought. The media these days make heartburn out to be an everyday occurrence, no big deal! Or so I thought... until I began to have trouble swallowing food. That all began around April 2004. It felt like I was trying to swallow a big bite of not chewed well hot dog. I would just beat on my chest a little until it went down. After all, I didn't think anything was seriously wrong. I was only 44 years old and as healthy as an ox.

Well, as things sometimes go in life, things became worse so I finally broke down and listened to my wife and went to my doctor. Well to break it down he gave me a choice between an EGD, which he strongly suggested or prevacid. Knowing that I would suffer serious consequences from my wife if I didn't listen tot he doc, I chose the EGD. The EGD was on July 8th 2004.

I don't remember much about that day due to the sleepy drugs; but my wife filled me in with great detail. All I remember, like bits and pieces of a dream that you try to recall is the word TUMOR. Everything else was a blur. The doctors told me I had a 9cm tumor at the junction f my esophagus and my stomach. The doctor also told my wife that it didn't look good. Biopsies taken during the EGD confirmed my worse fear - Esophageal cancer - AKA The Beast (a term used by EC patients). One week later pet scans told the rest of the story - Stage 3 Adenocrarcinoma of the esophagus. It had spread to lymph nodes.

It was a hard pill to swallow - no pun intended. I was 44 years old, in the prime of my life, with a beautiful wife and six children under the age of 15 at the time.

The next week was a little overscheduled. I had numerous tests and a trip to Memorial Sloan Kettering in New York City to visit Dr. Manji Banes, an esophageal cancer specialist for a second opinion, quick vacation, and oh yes I almost forgot -- surgery.

The doctors gave me two lovely options: a) have the tumor removed followed by chemo and radiation or b) radiation and chemo followed by surgery. I chose (a) as I just wanted to get that alien growth out of my body. It was in the end my choice and what I believe saved my life.

So on July 22nd 2004 I went under the proverbial knife. It had been just two weeks since I heard the horrible, life altering word - cancer. When these things happened it really force my wife to become a research/cracker-jack doctor all in just a few short days. She already was a nurse but she became a self-proclaimed medical expert on the subject. This was a good thing. She entertained herself with books, articles and anything she could find that had statistical odds of survival. The information was not all what we had hoped for. There was very little good news with this diagnosis. Even the radiation oncologist shed tears when explaining the odds of survival... definitely not a good sign!

So like I said, I had an Esophagetcomy/Gastrectomy on July 22nd 2004. All I can say about it is that it was no picnic and it hurt like hell. The surgery took a mere 11 hours. When I awoke I had tubes and wires coming out of me in places that I didn't even have openings as well as most of my openings along with all the bells and whistles that go with them. And for the next few days I was extremely confused. My wife actually tried to convince the doctors that I must have had a stroke at some point because I was not acting right (not a new thing... according to her I haven't been acting right for years.)

Surgery confirmed the lymph node involvement. Eight out of thirteen nodes removed were positive. Recovery went rather smoothly. I was out of the hospital in just 10 days, but when I went home I had wished I could go back! (Be careful what you wish for). I was exhausted, in constant pain and still reeling from the thought I probably wouldn't live to see my two-year old daughter turn three. Not to mention all the other important moments a father would miss when he has six kids to tend to. Sometimes it all was too much to handle, and I wouldn't have been able to if not for the peace that God gave me. The kids seemed nosier than normal, my wife grumpier than normal and everything felt like it was falling apart at the seams.

Less than a week after I got out of the hospital, I developed a really weird rash. It was a red circular pattern the likes of which I had never seen before. I also had a low-grade fever. The verdict... Steven Johnson's Syndrome... and another trip and three day admission to the hospital. This lovely three-day vacation was compliments of Vioxx. Too bad they didn't pay for it! The next day after I got home I was blessed with a little thing I like to call Luggage Syndrome AKA a massive hemorrhoid the size of a small child. I decided to name him Herman. So my wife loaded Herman and me up in the Ross family cruiser and hauled us into the hospital to wow the doctor. The doctor actually thought that Herman was a prolapsed rectum, which is a side effect of fiber and poor fluid intake. This had to be one of the most humiliating things ever to happen. I cried the whole way to the hospital. I just kept thinking "when will this end?" Turned out Herman was not a prolapsed rectum after all, Thank God!

Just as I was getting my strength back, October rolled around and it was time for chemo and radiation. I was started on radiation therapy five days a week, with chemo Cisplatin and a fanny pack with a continuous pump of 5fu. I lasted less than a week on the chemo and had to be hospitalized once again for extreme vomiting. The longest period of time I had gone between vomiting was three to five minutes in a 48-hour time-frame. I was dehydrated and extremely weak. One of my doctors warned me if I continued the radiation and chemo I would die sooner than if I just let nature take its course. This was not an easy decision. Some of the doctors weren't convinced that stopping treatment was a good decision. This led to a lot of turmoil and confusion for me. In the end I made the decision to have quality of life. I didn't want my children to remember me as being sickly and in a hospital bed as their last memories of me. It was the hardest decision I have ever made. After all I had promised my wife tI was going to fight with everything I had to beat it. And in a way I was worried that my family would think I was just giving up if I chose not to participate in the chemo and radiation. After talking with a counselor from the local cancer center, and my wife letting me know it was ok, I decided to stop my treatments. In the end it was just the right decision for me. I began making arraignments for hospice care in preparation for what was to come.

What I thought was to come didn't come, as most of my doctors warned me I probably wouldn't live to see Christmas. Turns out I did! Than New Years, Easter, Memorial Day and 4th of July to boot.

Although I am, as the say, NED (no evidence of disease), I have a great deal of difficulty with scar tissue in my esophagus. I was getting dilated every other week or more from November through May 2005. The doctor joked I should be able to do my own dilations since I had it done so often. The nurses knew my family on first name basis and I looked forward to chatting with them every other week. Than in April 2005 my wife mentioned the possibility of a stent placement to the doctor. He in turn sent me to yet another specialist. Who in turn looked around and like a good salesman that is is, found me the perfect stent for my problem. Just what a man needed for Father's Day!

As I read of other people's battles with this disease I realize that my war may not be over. But I am blessed to have won the battle so far... I contribute my victory to keeping a positive attitude and the peace that comes with my faith in God. Sometimes that's all you have.