Almost 5 years, and counting

With that random, yet holy, date of five years looming just six months away, I received some great news from Long Island oncologist Dr. Paul Hyman of Bay Shore on the Great South Bay.


Dr. Paul Hyman

The doc, an avid Mets fan (in contrast to Dr. Lee Zehngebot of Orlando, an insanely avid Yankees fan) yesterday told me to come back in a year. I think that's the Holy Grail for cancer patients. It's the time, converging with that five-year mark, a Mets no-hitter after 50 years and the transit of Venus across the Sun, that means I'm out of the woods for all intents and purposes. It means my tests showed up looking good, all the numbers should be about where they are and all the dots are there and the T's crossed.

So Dr. Hyman looked over the bloodwork, added information to his practice's new computer and software upgrades and then said, "everything looks good." Ah. Magical words to a person who has pretty much gone through hell, looked Satan, or whomever he was, straight in the eyes, kneed him in the hoo-has and walked slowly back home.

So it's been a long, bumpy journey, and there's more, I'm sure, to come. But Dr. Hyman's proclamation that he doesn't need to see me until past my five-year-out date of late December means I'm that much closer to the light than to the dark. It means my expiration date has not yet arrived. 

Dr. Phil Styne



Dr. Lee Zehngebot

 Along this trek, there have been several ups and quite a few downs. I've lost  my mother, gained two granddaughters and two sons-in-law, though one of those has since left the herd, gained three siblings and a bunch of nieces and nephews (see kohnzone.blogspot.com), and lost a couple of friends, one to this exact disease. I've met people via the interwebs with cancer of the esophagus who I later lost and I've made some remarkable friends, some in unexpected places, like hospitals and doctors' offices.


Dr. Joe Boyer

 And though I tried to avoid doctors most of my life, it all caught up with me in September 2007, when I was diagnosed with cancer of the esophagus, which until that year was pretty much a death sentence, killing 87 percent of the people unfortunate enough to receive the diagnosis.

Dr. Z, Dr. Joe Boyer, Dr. Phil Styne and a cast of thousands at Florida Hospital in Orlando, thankfully, were all part of a conspiracy to save lives, working on a grand experiment, a series of trials to figure a way to up the odds for esophageal cancer patients. I lucked out and caught them after they doubled survivability to more than 30 percent via their participation in a major study by the Minnie Pearl Cancer Research Network. As Catherine put it, I'm one of the 30 percent.



Dr. Z, for example, is not exactly a friend (never met outside of the office or hospital) though I do consider him one. But he is the man who almost more than anyone saved my life. (Yes, Joe Boyer was a big player, too, wielding a big scalpel and now a bunch of little robots even as he instructs at UCF and leads the thoractic surgical unit at Florida Hospital.)

Dr. Z and I have each other's cell numbers, and use them from time to time. He texted me a photo of him dropping down a slope on skis last year after one of his extreme vacations. I texted him yesterday in the car (no, I wasn't driving) after my visit with Dr. Hyman. I wrote: "Just saw oncologist who said all looks good and wants to see me in a year. Thank you for saving my life. Seriously."

And this die-hard, lifelong Yanks fan replies: "Anytime. You look better than the Yankees."

Hear that, A-Rod?

Four years -- 80% of my goal, at least

In the past four years I've:

• Seen two daughters married;
• Gained two wonderful granddaughters;
• Seen all my children blossom into amazing adults;
• Reconnected with friends and family from years ago;
• Connected with my West Coast family of two sisters, a brother and niece and nephews galore;
• Moved from Florida to New York for a better job;
• Made new friends;
• Educated people I'd never met, and hopefully saved a couple of lives;
• Met people I never would have under different circumstances; and
• Had some downers, too, such as losing my mother and several aunts; lost friends to cancer; found out I lost a brother a year before I met my family in California; lost one son-in-law to divorce; and had far more medical visits than any one person should have in a lifetime.

Still, as I've said during the past four years, it sure beats the alternative. As in not being around during the past four years. And that nearly happened.

It was about this time in 2007 that I agreed to see my doctor, John Pfeiffer in Celebration, Fla. I'd been distracted by an apparently very successful diet and my mother's illness, and put off seeing the doc until I was persuaded to get a checkup.

That's what my esophagus looked like when it was sick.



I was having difficulties swallowing and often spit up what I did consume. Weight loss was another concern. While I was dieting, I was losing weight faster than expected. Together things started to make sense.

It was the start of this disaster known as cancer of the esophagus -- a disease that nearly killed me. It claims about 88 percent of its victims, data show. Let's catch up.

I guess I've been the lucky one. In just the past few weeks, I lost a friend to this ailment and made a new acquaintance who is coping with it at a rather advanced age. Lucky. Depends on your definition. If surviving is luck, then so far I'm pretty damned lucky. But acquiring it in the first place was anything but luck.

Rather, it took years of hard work and practice. Overeating. Gaining weight. Spicy foods. It was the triple crown needed to acquire Barrett's esophagus, a pre-cancerous condition in which the lining of the organ alters to cope with the poor dietary choices. My hiatial hernia didn't hurt the cause either.

So with luck, or the lack thereof, it's been four years since I saw Dr. Pfeiffer, who said I most likely had to have the sphincter of my esophagus dilated. He referred me to Dr. Phillip Styne for an endoscopic exam. I made the appointment and underwent the endoscopy.

I knew something was wrong as soon as I awakened about 20 minutes after the five-minute procedure was supposed to end. "There was some swelling. You may need surgery," Dr. Styne told me when I woke up. He'd taken biopsies of my lower esophagus, where this swelling was really a cancerous mass.

That was a Thursday and I wasn't going to hear back until the upcoming Monday. The weekend really sucked.



My Port after it was removed.



Monday, Dr. Styne called to say he'd made contact with Dr. David Diamond and Dr. Lee Zehngebot, a radio oncologist and medical oncologist, respectively. Dr. Z was no-holds-barred. He told me this was not good, that I was in for a really crappy few months, at the least.



The prediction was not incorrect.

Nutren 1.5. The breakfast of champions, if champions have

no taste buds and can't eat anything else. Anything. Else.

 

A "port" was implanted in my chest and to my carotid artery; a "g tube" was implanted in my belly so I could consume liquid nutrition (mmm, Nutren) when the radiation was expected to swell my esophagus and I couldn't swallow; I was tattooed and set up for my radiation treatment; and began seven weeks of misery: rads five mornings a week and chemo 24/7 pumped into my port, plus three half-day infusions of chemicals designed to kill my cancer.

All the while, I tried to eat as much as I could even as I was losing weight. We went to TooJays and Outback as often as possible to reward me for putting up with the crap and to fatten me up, so to speak.

A month after the chemo and rads ended, I was tested out to see if I was ready for surgery. A PET scan showed my cancer may have spread to a lymph node in my chest and to my liver. Such a development would rule me out of having surgery because it would have meant my cancer had spread and there wasn't much hope for me. Biopsies of my liver and the hylar node found the so-called "hot spots" were just residuals from my radiation. Basically, they cooked my liver a bit.

A laser is used to align my tattoos to the proper position

for radiation treatments.



So within months of discovering I was being attacked from the inside by cancer of the esophagus, the tumor appeared to have been defeated and the next step was surgery to remove the slain tumor and most of my esophagus, which would be re-created by skilled surgeon Dr. Joe Boyer in Orlando, who had to slice and dice my stomach to mimic my esophagus and still work as a stomach.

My new organ is called a neo-esophagus.

OK, that was then. Since, the road to recovery has been bumpy. Bumpy for my body and bumpier, still, for friends and family who have had to put up with what's left of me.


That's what my belly looked like after

surgery. You don't want this to happen

to you. Trust me.

Along the way, mainly through this blog, I've met some amazing people. A few have gone through this. Some know others who did. And a few are ongoing patients and newcomers to the torture wheel.

For example, just a few weeks ago I received an email from a woman in Georgia about her father. Veleta Floren told me all about her dad, Jack Holley, who was diagnosed in June. He's had a rough go and is still consuming just the wonderful liquid diet I was provided called Nutren 1.4 (artificially flavored vanilla for me, see post at http://cancervivor.blogspot.com/2007/10/is-it-soup-yet.html). But the thin tunnel down his esophagus is opening and he can swallow a minimal amount of liquids. You can read about Jack at http://www.caringbridge.org/visit/jackholley.

There were others, as well. Including friends and family. Friends like Jim Solomons, an amazing and brave man who I met through work; he was a spokesman for the Orange County Sheriff's Office and I was an editor at the Orlando Sentinel. He learned about my cancer after his own diagnosis, when a mutual friend, Bianca Prieto, a Sentinel reporter, told us both about each other's plights.

Jim passed away a few weeks ago after his cancer re-appeared a few months ago by attacking his neo-esophagus and liver. He put up a hell of a fight, something he really didn't want to do. He stuck it out and is one of the bravest men I've known.

I've also done some more research. While cancer of the esophagus is continuing its march of death, the survival rate isn't really improving through advances in treatments. Docs now do the surgery that kept me hospitalized for weeks laproscopically. The length of hospital stays is down and the chemo therapies are being refined.

Yet, last year there were 16,640 new cases of esophageal cancer and about 14, 500 deaths. Thus, the survivability rate isn't very high, based on those numbers. Just 12-13 percent. Officially, the five-year relative survivability rate for localized staged cancer of the esophagus is 37 percent, and the relative rate for all stages is 17 percent.

If you're affected by this disease, there also are numerous trials of chemo and radiation therapies going on right now. You can go to this link and find out about them.

Try not to be among those who acquires the disease. Trust me, it sucks. Americans have experienced a rapid growth of incidence in the disease. Our dietary habits have huge role. And by huge, I mean filling our bellies. We do that with all kinds of crap and then wonder why we get heartburn. Greasy and fatty foods are the behind the growth of our large rears that are, well, behind us. They lead to the heartburn that leads to the Barrett's esophagus that leads to cancer. Sort of like the neck bone's connected to the back bone, etc.

If you've been eating like this, think about it and change your habits. You may also experience some signs that you are developing problems, and if you do please see a gastroenterologist. For examplie, heartburn and acid reflux lead to esophageal damage. Your heart isn't burning. Your lower esophagus is. It's literally being digested by your stomach fluids, and it reacts by adding, over time, scar tissue and then protective cells to block the acid. But these mutations, called Barrett's esophagus, are pre-cancer cells and without treatment will result in cancer. PPIs, or proton-pump inhibitors, which help keep your stomach from creating acid,  are drugs that can protect you. They're meds like Prilosec, Kapidex, AciPhex and others. They work. See your doc.

 

So unless you really want years of horror stories to tell friends, family and children, or worse, I encourage you to see a gastroenterologist and take care of yourself.
 

If you want a scared-straight type of experience, go to this link, start from the bottom and work your way back up to here. My journey might just keep you from taking the same path.

The case of the soft-tissue mass

When last we met, I was going to see thoracic surgeon Dr. Joseph Boyer, who might have to remove the growing growth attached to the esophagus he created from the excesses of my stomach.

Dr. Boyer said the PET scan's all-clear might be inconclusive because the CT scan showed this growth had pretty much quadrupled in size since the summer. He felt a biopsy was needed, and suggested Dr. William Mayoral, a partner of Dr. Philip Styne. Well, he said he could do it but the procedure "would hurt more" if he had to surgically obtain the biopsy. Further, Dr. Boyer said if Dr. Mayoral pulled the biopsy, he might be able to suction the entire soft-tissue growth from my body if it was comprised of fluid.

So, the docs got together and scheduled me for the biopsy on Friday -- Dr. Mayoral was going to grab the sample via an endoscopy with ultrasound to locate the growth outside the esophagus, then use a needle or some other small surgical device to obtain the sample.

He did this procedure and it went well. As I was waiting for the car to be pulled around at Orlando Regional Medical Center, Dr. Mayoral phoned me to say it appeared the tissue was not malignant.

Whew! This confirmed the PET scan's findings: I apparently don't have more cancer growing inside me.

So Monday, I saw Dr. Lee Zehngebot, the oncologist who along with a slew of other docs and medical professionals saved my life through chemistry. Dr. Z spoke to Dr. Mayoral, who confirmed that the tissue was negative for cancer. But he was concerned: "I don't know what it is," Dr. Z said. And that concerns him.

So his office is setting up another CT scan for two weeks from now to take another look at the growth to see if it has grown further since my last scan Dec. 7. After that, it's likely he'll want Dr. Boyer to remove the soft-tissue mass.

I asked Dr. Z what the worst-case scenario is. He said I could have cancer. But the pathology tested negative, I reminded him. He agreed, yet was concerned because it was such a mystery.

(I always like a good mystery, but somehow this one I'm not enjoying so much.)

So there will be more tests and scans -- possibly surgery -- and I presume isotopes flowing through my veins as the docs solve "The Case of the Soft-Tissue Mass," coming soon to a blog post near you.