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?

Happy reunion

Dr. Joe Boyer and I visit briefly in one of his exam

rooms. (Photo by Susan Jacobson)

I had a couple of brief visits with two of the several men who saved my life four years ago.

Dr. Joe Boyer, the thoracic and robotic surgeon, was my first stop Tuesday afternoon. I kind of felt bad because when I arrived the office across from Florida Hospital was packed, and I took up almost 10 minutes during our brief reunion.

Then I visited Dr. Lee Zehngebot, who was in his Winter Park office. When he saw me, he gave me a hearty hug and said my docs up North seem to be giving me a clean bill of health.

During my visits with each, I gave the two major-league Yankees fans a few parting gifts courtesy of friend Mindy Levine, who has a couple of friends of her own in the Yankees organization.

It was great seeing the docs, and I was glad to be there as a "former" patient, not a current one.

Keep up the good work, gentlemen.

posted from Bloggeroid

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.

My buddy Jim needs your help



Not the best image of Jim Solomons, but he's working.

 My friend Jim isn't asking for any help, and he is in need of nothing physical.

But he needs your help. In the form of prayer, well wishes, positive thoughts, good vibes or whatever you want to call it. And he needs this karma now.

Jim has gone through the same cancer treatments I did, just a few years later. The technology and surgery used to fight cancer of the esophagus had been honed by the time it got to Jim. He made it through the chems and rads seemingly fine. His doc was my doc, Dr. Lee Zehngebot. His surgeon was my surgeon, Dr. Joe Boyer.

I was in the hospital a bit over three weeks after my surgery before Christmas of 2007. So when I went to visit Jim a week after his surgery, I figured he was just out of ICU, which was my timetable. One week in the ICU and then it's off the the cardiac care unit for recuperation.

Rather, Jim was being prepped for discharge. One week after surgery. Miracle Man. The esophageal cancer terminator. He'll Be Baaack (insert Arnold's voice here) -- to work.

That was the first time we'd met face to face. As he was preparing to leave Florida Hospital. We'd known one another from the zillions of calls we at the Orlando Sentinel made to the Orange County Sheriff's Office public-information team, which Jim, a civilian, helped direct.

So it was a great day. His wife Judy was there and Jim was in pain but all smiles.

Since then, Jim did get back to work, and I think the Orlando media collectively sighed -- he's the best that office has or had for quite a while. But he's has had a rough go since. He had some kidney issues. He had a minor -- if you can call it that -- stroke. He's tried hard to bounce back.

Unfortunately, so did his cancer.

Jim is back on chemo and as bad as the first batch was -- and take it from someone who knows, it was bad -- this batch is worse. He's home. He can't really eat, so he gets his nutrition from a bag in a backpack and an IV drip. Yum. He's nauseous and couldn't even hold down a milkshake today, he said. Trust me, that means it's rough going.

Jim has another major infusion of chems in a week or and he's hoping things will improve.

So am I. And so should you, because Jim truly is one of the most caring and kind individuals I've ever known. And I know many kind, caring people -- and you all know who you are. Seriously.

So when I heard Jim today I know he was feeling bad, down in the dumps, ill and sick to his neo-esophagus (formerly known as his stomach).

Right now, Jim can use your positive vibes. As you know, I'm not big into the prayer thing. But like I've said during my treatments and follow-up surgeries, prayer may not help but it surely will never hurt.

So if you take a moment when you read this, think of Jim and his family and all he's going through. And let's see if this positive feedback helps.

It certainly can't hurt.

More Good News, And More

The title above sounds like it was written by the Department of Redundancy Department. So I'll explain:

Last Friday I saw Dr. Lee Zehngebot, who reiterated what he'd told me a couple of days earlier: I'm pretty darned lucky.

As it turns out, the tumor removed by Dr. Joseph Boyer was a desmoid tumor, which is comprised of spindle cells, as Dr. Boyer had told me soon after the Jan. 18 surgery.

But the spindle cells formed this desmoid, not a carcinoma, which is a malignant form of cancer. While desmoids are benign, meaning they won't spread throughout my body, they are locally aggressive and quite dangerous on their own. This desmoid was seriously attached to my lung and was touching my esophagus. It could have gotten ugly had it remained for much longer.

In fact, research I've done since the diagnosis indicates I am one of 27 lucky individuals in the English-speaking world on record to have an intra-thoracic desmoid. Dr. Boyer, soon to be an associate professor at UCF's new medical school, might actually write a paper on the case, if his research jibes with mine now that he's becoming an academic in addition to just an amazing surgeon. (Line for autographs begins at the rear.)

So Dr. Z said this was the best possible scenario for me: A benign tumor; not related in any way to my previous case of cancer; removed from my body; no other signs of cancer within; I won't need chemo to treat the desmoid. Whew!

In addition, my severe chest pains are pretty much a thing of the past. Since my release from Florida Hospital on Jan. 22, I have not had an incidence of Prinzmetal's Angina. That is more good news and quite a blessing. After a year of torment, it seems to be over.

So after seeing Dr. Z on Friday, I saw Dr. Boyer on Wednesday. He confirmed that he got every bit of the tumor, which is why he had to take a piece of the lung. He removed the dressing from my incision and said it looks good. There's still quite a bit of swelling, but he said that will decrease in time, as will the pain and the numbness on my right side and chest. He said there's a chance the desmoid would return -- it's not uncommon. But he didn't think it would because of its location and origins. Whew again!

Dr. Boyer also referred me to a new cardiologist. As you may recall, I fired my previous heart doctor in Florida Hospital after he told me he came to the diagnosis of Prinzmetal's Angina "because now I believe you." This must have meant that when I was complaining about severe chest pains for the previous year he didn't believe me. Which must be why he didn't order a simple test to see what was up with my heart, such as wearing a holter monitor to record my EKG for a day or two. But I digress.

Heres the more: Monday, I meet with my new cardiologist, Dr. Egerton van den Berg Jr., whose office happens to be a flight below Dr. Boyer's. I chatted with his medical assistant, Jeremy, who described his boss as not just a great doctor but also a really good person. I like that in doctors -- so far, all of my current docs are great at their jobs and great people.

I know, it wasn't all that exciting, but it's good to me. I want a competent cardiologist to check out my ticker and make sure that after a year of spasms in my cardiac arteries there isn't any lasting damage.

I'll find out in just a couple of days. I'm hoping the good news continues...I sure can use it; maybe 2010 will be a good year after all.

Home, sweet home

As wonderful as the folks at Florida Hospital were, it's so good to be home.

During the weekend I enjoyed the birthday celebrations for granddaughter Emily. Aimee and Luis held the party at My Gym in the Dr. Philips area, and though skeptical at first I confess that the place was really cool, and all the little ones had a blast. There was another party afterward at Luis' parents' home in Kissimmee. Family was there in abundance, as were family friends. I was so glad to see friends and colleagues Anika and Eric Palm and their 4-month-old daughter Olamina, or Mina for short.

Though I must say that it was in a mirror at My Gym that I noticed I was standing stooped down, looking old. It was because of the surgery I had less than a week before and the pain pills I was on. But I looked old and rickety, and I guess at that moment I was. (No comments from those like my daughters who would say I look old all the time.)

My days mainly involve sleep. Some of it is created by exhaustion from activity, albeit minimal activity. Some is chemically induced. (You know my motto: Better living through chemistry!)

I get on the computer once a day for a few minutes, give or take. I have received so many comments from friends on Facebook and from this blog, and I'd love to reply to all, but it'll have to be when I can focus for a bit longer.

I have a visit with Dr. Joe Boyer, the surgeon who pulled the tumor from my chest, next week and prior to that visit I hope to hear from the doctor about a new cardiologist.

At that visit I hope to get an estimate of how long my recovery will take and when I'll be able to return to work. Most folks look for ways to get out of work, yet I just can't wait to return.

Maybe that's because it'll mean my life's getting back to normal.

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.

Revisiting with Dr. Boyer

Since receiving the all-clear-sort-of from Dr. Lee Zehngebot last week, I made an appointment with Dr. Joseph Boyer, the surgeon who turned my cancerous esophagus and stomach into a stomach that acts like an esophagus.

I'll be at his new office across Orange Avenue from the main Florida Hospital Orlando building Wednesday morning. By then he and Dr. Z will have discussed the scans I've had last week and in August and maybe come up with a gameplan.

That's my hope, at least.

Meantime, I saw my new cardiologist, Dr. R. Charles Curry, who reiterated that whatever is causing my faux heart attacks, it's not the heart, it's not arteries feeding the hear and it likely is, as Dr. James Miner and Dr. Philip Styne explained, spasms of the arteries feeding the stomach and esophagus.

Still, no one is taking into account the cyst or whatever it is in my chest cavity and what role it may have in the attacks. Hopefully after Dr. Boyer works his magic, the attacks will go away.

A negative that is totally positive

How many times in your life has a doctor called you at 8:15 at night? Not too often, right.

So it's a testament to Dr. Lee Zehngebot, the Orlando oncologist who helped save my life, that he called a short time ago to give me the abbreviated version of the results of my PET and CT scans taken Monday.

In short, he's "100 percent" confident that I have no cancer in me. The PET scan, which detects probable areas of the body in which cancer cells are growing, was negative.

Whew!

He said that the weird cyst-like confab in my chest, though, has grown since the last set of scans in August. While he's confident it's not a cancerous tumor growing, he's not sure exactly what it is.

Most likely, he said, it's "some kind of collection of fluid."

So Dr. Z said I should call surgeon Dr. Joseph Boyer in the morning to set up an appointment for next week. Dr. Boyer is the head of thoracic surgery at Florida Hospital, and the guy who cut and filleted my stomach and esophagus into a working organ from a cancerous one.

I imagine the next few weeks or months might involve a biopsy or two and possibly a surgery. But at least the doctors won't be treating a cancerous tumor.

And that's the best news this holiday season.