Check out this site -- it's worth the click

A few weeks ago I was asked to write an essay for a wonderful Web site that focuses on survivors of cancer, in all its many forms.

My essay was published today. The site is http://www.voicesofsurvivors.com/, and I encourage everyone to check it out not just today, but everyday.

That's because each day, site manager Lynn Lane posts another story by another survivor. Lynn, a documentary filmmaker, also records these tales visually on video. These also are available on the site.

So please give Lynn's site a read. And if you have any comments, I'm sure he'd love to hear them.

A little Botox goes a long way

Well, I'm back on solid food -- thank goodness for that -- and breathing a sigh of relief after may endoscopic exam yesterday, July 20.

Dr. Phillip Styne and his crack team of nurses, assistants, anesthesiologists and aides at Florida Hospital Orlando injected a dose of Botox into my pyloric valve, also known as the pylorus, to make it easier for me to digest food.

It was kind of quirky because I was taken into the procedure room at 1:19 p.m. Monday but Dr. Styne couldn't do the procedure yet -- the Botox hadn't yet arrived from the hospital's pharmacy.

I was slightly doped up on anesthesia when the doctor told the nurse anesthesthetist to hold off on fully loading me up. I had the mouthpiece in place for the endoscopic tube to be used, and I was allowed to remove it until the drug arrived. (Good thing, because I was drooling a little; sorry if that's tmi.)

One of the nurses joked that if there's extra they could use it elsewhere if I wanted.

Then folks started getting a little peeved at the pharmacy. I even offered to phone down and complain that 'I'm here lying on the gurney, the the stuff up here!' But a few minutes later, it arrived and about 1:32, if I recall correctly, I went lights out.

I woke up about 20-25 minutes later in the recovery room with Catherine in attendance. She'd already spoken with Dr. Styne, who said all went well. (She even snapped a photo or two of me unconscious. Tweeters can find my images on Twitter if you search for my live-at-the-time tweets under #endoscope.)

I'm adding the above photo here as a sample.

So in the end, all went well, the Botox seems to be working, I'm eating again -- though being a bit gentler with my dining -- and as I tell people all the time I'm happy to be here.

There's always room for Jell-o

I'm on Day 2 of a three-day clear-liquid diet leading up to an endoscopic sojourn down my gullet by Dr. Phillip Styne on Monday afternoon.

This means soup, Jell-o and water. It's pretty bad that Jell-o is about as solid a food as I can consume. (Kind of a glimpse into the future if I don't keep my teeth in good order.)

Dr. Styne thought I'd be able to make it to January without needing another endoscopy, but I missed by several months because I think my pyloric valve, known as the pylorus, isn't cooperating.

In simple terms, the pylorus opens to let food travel from the stomach (in my case, what is left of the stomach) into the intestines. (More at http://en.wikipedia.org/wiki/Pylorus) Because of the surgery to my stomach to replace by cancerous esophagus, nerves were severed that control the pylorus and other aspects of the stomach's function.

So, Dr. Styne & Co., will use his endoscopic device to peer into my stomach and see if the pylorus isn't opening as it should. If so, he'll inject Botox into the valve to deaden some of the nerves keeping it closed. This should open it up, hopefully for good.

I'll Twitter from Florida Hospital on Monday, but I don't think the good doc will let me bring the phone into the procedure room. Besides, I'll be on some good drugs and won't be able to spell my name -- or put a cohesive sentence together. (I can barely do that on a good day.)

But I will get a photo of the doc before the procedure. Styne is a good and decent man -- and one hell of a doctor.

So until then, I'll be swilling coffee sans cream; tea, both hot and iced; chicken noodle soup (yes, the doc says the noodles won't be an issue because they're quickly digested); and, of course, good old Jell-o.

After all, there's always room for Jell-o. Especially on the other side of my pylorus.

Time sure flies when you're having fun?

It's really hard to believe, but two years ago this week I first started noticing something wrong.

Catherine and I were on our vacation -- a drive from Central Florida to Yellowstone National Park and back via Baltimore, Chicago, Minneapolis, Mount Rushmore, Badlands National Park and several other stops -- when I became nauseated at a Ruby Tuesday restaurant. It happened again the following night after a late meal. And again later at a casino in South Dakota.

I dismissed the symptoms. I was on a diet. I was traveling and not drinking enough. I thought the two were causing food to just not make it all the way down.

After the two-week trip, I traveled to South Florida, where my mother was about to have a cardiac catheterization. I dismissed the symptoms more in the coming weeks and months as my mother was swept into a deeper illness following open-heart surgery. My inability to even eat a doughnut as I drove to or from South Florida was ignored as a diet issue. I actually kept extra grocery bags in my car in case I gagged while driving. I was that ignorant as to what was happening to my body.

I couldn't check in to see a doctor; I had work during the week and on weekends I was visiting my ailing mother. I just didn't have the time.

But Mom was falling deeper and deeper into a medical nightmare and I finally listened to my wife Catherine and went to see my doctor.

Dr. John Pfeiffer in Celebration, Fla., suggested I needed to see Dr. Phillip Styne. He suspected the sphincter of my esophagus was not dilating properly and that Dr. Styne could enlarge the opening during an endoscopic exam. There was a very small chance I had cancer of the esophagus, Dr. Pfeiffer said, but I was too young and he'd never come across an esophageal cancer patient. He doubted that's what I had, though the chance was there.

I'll never forget Dr. Styne's greeting to me as I awakened from the anesthesia of that endoscopy. He told me there was some "swelling" and -- drum roll -- he took a biopsy.

This was on a Thursday. Talk about a miserable weekend.

But by Monday it was confirmed. Dr. David Diamond, who would become my radio-oncologist, called to say I did have cancer and I needed to get in pronto. I needed to see Dr. Lee Zehngebot, my oncologist. Together, this team -- Styne, Zehngebot and Diamond -- plus, later, Dr. Joseph Boyer, would be the men who saved my life.

But I digress.

Dr. Z explained that esophageal cancer was rare and deadly. In my case, it was likely caused by a combination of factors, including years of heartburn treated with antacids but no real medicines. My odds were not good, but the docs were not ready to write me off just yet.

Dr. Diamond initially told me I was stage 2 to 3. Not good. He said I had a 50-50 chance of survival. Again, not good. But each step of my treatment could lead to a new assessment. As I passed a new threshold, I'd be re-assessed. Still, 50-50 meant I had as good a chance to live as to die.

I chose to live -- though later during treatments I briefly questioned the sanity of that choice.

In the weeks that followed I underwent daily zaps of radiation, heavy-duty jolts of X-ray-like doses of isotopes I'm not too familiar with that, weeks later, I'd learn affected my liver and other hot-spots in my body, which resembled new cases of cancer. Thankfully, biopsies would find that not to be the case.

I also was attached 24/7 for seven weeks to a chemo pump injecting poison directly into my jugular vein.

This one-two punch sapped me of my strength and, at times, my will. But I didn't want to let depression get the best of me. I tried to remain focused and positive. I would not be distracted by my condition or the deteriorating state of my ailing mother.

After these treatments were completed I had about a month of a "cooling-off period" to recover before major surgery to dissect and resect my esophagus, stomach and lymphatic system in my chest. Also during this time, my Mom seemed to be getting mildly better. We were able to move her from the hospital in Fort Lauderdale to a rehab center in Boca Raton, then, days before daughter Jennifer's marriage to Chris Kuz, to a rehab center in Orlando.

I finally told Mom about my cancer and how I was doing pretty well. I mean, I hadn't died during the chemo (several people had during trials of the treatment) and I was still standing. We moved her belongings from her apartment in South Florida to our garage. A week before my surgery the weekend before Christmas 2007, I traded in my beloved Mazda RX-8 sports car for a larger and easier to enter Saturn Vue SUV. I'd never be able to squeeze into the RX-8 after my surgery, and I'd need the SUV to haul Mom's oxygen tanks after she was discharged from treatments.

Mom had a couple of setbacks in the interim, and on Dec. 21 I underwent surgery. I had an esophago-gastrectomy -- basically, most of my esophagus was cut away. To replace it, my stomach was cut, spliced, pasted and pureed into a faux esophagus and a smaller stomach, now planted in my chest not far from my heart.

It took about three weeks to be discharged from the hospital and another several weeks to recover before returning to work.

Since then, I lost my mother, I've regained about 15 pounds but still am far lighter than I was during those days of dieting two years ago.

Like I tell friends and others, I like the results but I would not recommend the diet program.

So, friends, it comes down to this as CancerVivor.blogspot.com has reached more than 19,000 page views, if you have heartburn, then lose it; if you have problems swallowing; if you suspect something amiss in your digestive system, please see a doctor and be open to treatments. Even if the dreaded "C-word" -- cancer -- is the diagnosis.

Two years later and I'm still here.

Another day, another scan

I have a confession. I forgot about an appointment for a CT scan on Monday. I just went about my business and realized it only when I had my first cell call of the day and noticed the notification.

So I go to Florida Hospital on Tuesday afternoon for the scan. No biggie. I've done these things every four months for nearly two years, and even more frequently prior to my surgery. By now I should glow in the dark.

The scan will allow my doctors to see if anything is growing inside of me. Well, let me rephrase that. The doctors will see if anything bad is growing inside. I don't think so; there's no blockage that I can tell.

So I feel pretty good going into this scan. I see Dr. Z in mid-April and I feel certain I'll have a relatively clean bill of health.

As I go through this scan, this Web site is about to be visited by its 18,000th viewer. With that milestone, I hope to remind everyone that esophageal cancer is among the fastest-growing cancers in the United States and around the world. Primarily affecting men, it now also is crossing the gender gap and striking more and more women.

But there are ways to avoid it. It all centers on seeing a doctor regularly and -- unlike what I did -- tell the doctor if you have persistent heartburn. Further, tell the doc if your persistent heartburn goes away, because that's not normal either. It could indicate an advanced condition known as Barrett's Esophagus, which is a precursor to cancer.

Take your medications as if your life depends on it. If your doctor put you on any of the meds that keep your body from making acid, use it. It could save your life and is a small price to pay to watch your children grow up, celebrate holidays or enjoy a spring afternoon.

So, going to the CT scan Tuesday is just a small inconvenience, and hopefully it will confirm to my doctors that they did an outstanding job in 2007 and 2008 keeping me alive.

New news about esophageal cancer

In recent weeks, there have been a few developments in the fight against cancer of the esophagus.

Esophageal cancer in general is among the fastest growing forms of the disease. And a study by the National Institute on Alcohol Abuse and Alcoholism, first reported in The New York Times, indicates even a small amount of alcohol -- a glass of wine or half bottle of beer -- could increase the chance of developing squamous cell esophageal cancer. This is even more so if the patient is of Asian ancestry.

Squamous cell cancer is most often at the upper end of the esophagus, while the type of cancer I had, adenocarcinoma, generally affects the lower end of the esophagus near the stomach. Squamous cell carcinoma also can be caused by smoking, or in combination with drinking.

Here's a link to the New York Times article. 

The other development was the death earlier this month of the actor Ron Silver. Silver had been in a two-year battle with esophageal cancer. He died Sunday, March 15.

His death opened my eyes to the fact that even though I feel pretty good now, I'm not out of the woods 18 months after my initial diagnosis.

I'll continue to update on a more regular basis.