Tuesday, December 22, 2009
The case of the soft-tissue mass
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.
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Sunday, December 13, 2009
Revisiting with Dr. Boyer
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.
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Tuesday, December 8, 2009
A negative that is totally positive
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.
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Monday, December 7, 2009
A day of testing
This double-whammy dose of radiation hopefully will allow my doctors to complete a diagnosis begun in August and left undetermined until now.
Back then, a PET scan saw something.
What it was couldn't be determined. So they docs scheduled a PET scan.
The PET scan didn't quite notice the small mass in my abdomen that the CT did, but it found something very small in my lungs.
What it was couldn't be determined. So my docs did what all good docs do: They consulted other docs, and still others.
In the end, Dr. Lee Zehngebot, an extraordinary oncologist, consulted with Dr. Philip Styne, an extraordinary gastroenterologist. They both checked in with other internists, gastro docs, radiologists and the like.
The conclusion? Wait three months. As it turns, it's four, but who's counting?
This will give whatever is in me to either change or not change. The docs felt this was safer than "going in" and performing biopsies on the various spots they detected. The initial thingie in my abdomen is likely a cyst. Probably not dangerous, they thought but didn't know. I think it's the thing in my lung that drew the most concern.
So in less than a dozen hours I'll have radioactive glucose injected in me from something that looks as if it came out of a sci-fi movie and then will spend about an hour or two relaxing so my body can absorb said glucose. Then the scanning doohickey will determine which parts of my body, if any, absorb the glucose quicker than expected. If something does, it's possible that is a cancerous area, since cancer cells and very few others absorb glucose rapidly.
After all that's over, I will go across the street and drink an iodine-laced cocktail for the CT scan, which isn't nearly has complex.
By the end of the day, I'll be warned to stay away from pregnant women and small children for a day as a precaution. However, my eyes will be able to light up a dark road and my hands will glow in the dark. As for other exterior organs, well, we'll just have to keep that private.
A few days later, hopefully I'll get the all clear from Dr. Z. I don't want to get news about these tests in two weeks when I see him.
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Thursday, November 26, 2009
Thanksgiving for me: Two years ago, I was not sure this day would arrive
Two years ago I was not certain my future would include today, Thanksgiving 2009, or my birthday a couple of days later.
In my mind, the future looks like today.
Two years ago, I'd just been removed from my 24/7 chemo pump and was preparing -- as I am now -- for tests on Dec. 7. I was thankful then for my doctors, my family, my friends and for life.
Still, I remember telling my cousin David Spitz, the popular Connecticut chiropractor, that I feared I would not make it to age 50. I was panicked, often tearful. But 50 became a goal. At the time, it seemed distant, remote, unattainable.
Today, it's a bit closer -- just a few days away.
So on this Thanksgiving, I feel truly blessed with that family, those friends, my wonderful doctors, their wonderful staffs, and the knowledge that I've reached another milestone, another goal on the road to recovery from esophageal cancer.
And as a way of paying it forward, I'll reiterate as I have probably too often in this blog: If you get heartburn, if you have acid reflux or even if you take a few Tums or Rolaids every day, you could get cancer. See a doctor, have an endoscopy, consult your family doctor or gastroenterologist.
Heartburn and acid reflux could lead to Barrett's Esophagus, a precursor to esophageal cancer. There are treatments at that stage to help avoid cancer. But doing nothing is not one of them.
Be thankful for what you have today, as I am, and celebrate with your loved ones. Be kind to those loved ones and take care of yourself.
Oh, another tip here -- moderate amounts of turkey, sweet potatoes, corn on the cob and pumpkin pie are not known causes of Barrett's Esophagus or esophageal cancer. So eat up and celebrate, with your loved ones of course!
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Tuesday, November 10, 2009
Did I ever tell you about ...
They're not heart attacks, but sure feel like them -- or so I've been told. I become sweaty and exhausted, chest is compressed and my chest and left arm are in extreme pain. Not quite as bad as after my surgery but damned close.
The heart and the stomach/esophagus are fed by the same network of arteries, so what affects one of these smooth-muscle tissues feeds the other. Since they're faux heart attacks and possibly be caused by something I eat, I tend to call them fart attacks. Gotta laugh at something, right?
They began toward the end of last year, when I really thought I was having a heart attack. It's what sent me to Florida Heart Group and Dr. James Miner. But after cardiac catheterization and other tests, I was cleared -- no heart attack.
Dr. Miner suggested my problems might be related to my cancer surgery. Dr. Philip Styne, the gastroenterologist in Orlando, didn't disagree. He said the attacks might be caused by esophageal spasms.
So the docs prescribed a couple of drugs in case another faux heart attack hits. They seem to hit almost nightly now, some more severe than others.
Some I believe are caused by my schedule -- and the fact that I tend to snack at night when I get off work. Others I just can't explain. They hit at night, during the day, once or twice at work.
Thankfully I have the meds and they really work. One, called Nulev, dissolves under my tongue and is supposed to help with such spasms. It works off and on. The nitro-based drug seems more consistent and reliable. Between the two I've avoided most of the really bad attacks. Those occur about once a week and I just can't manage them.
I tend to think these attacks may be caused by one of the two elements that have stymied my docs since August, when I had CT and PET scans with inconclusive results. The CT scan detected what might be a cyst in my chest. I think it is this cyst that is pressing on an artery that feeds both my heart and esophagus/stomach, especially after I eat, when the stomach -- kind of in my chest because of the surgery -- is bloated.
I've been scheduled for another round of CT and PET scans in early December. Perhaps then the docs will get a handle on what is causing the fart attacks.
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Thursday, October 1, 2009
The check was in the mail
That happened this morning.
In the name of transparency, I just endorsed the check to the Florida Hospital Foundation.
It wasn't a massive amount, just $149 and change. But it felt good to pass the money along from -- you, my friends, family, colleagues and complete strangers. It was all your doing. And I thank you.
Jaclyn Lindsey, a development specialist, was in the Foundation's Orange Avenue office when I arrived this morning. She's a good person and was honestly very happy to have the check. It will be bundled with other, similar small donations and will be used to purchase equipment for the Cancer Institute that might just help save someone's life.
Maybe even my own. Or yours.
There are other ways to donate small amounts. I learned a couple of weeks ago that the Foundation set up a way for cell-phone users to text in $5 donations from their cell phones. Just text the word FIGHT to 90999. The $5 donation will be billed to your cell phone account.
So let's keep up this fight against cancer of all kinds. One of the best ways is by checking out this blog regularly.
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Monday, September 21, 2009
Yes, it's been two years
- Met wonderful people
- Lost my mother
- Found a brother, two sisters, cousins, nieces, nephews and an aunt
- Rekindled old friendships, built new ones and discovered still others
- Found inner strengths
- Found inner weaknesses
- Presumably overcame cancer
- Found out my heart is healthy
- Found out my resectioned stomach still has some issues
- Discovered low-fiber diets are less than adequate and not very tasty
- Lost much of my sense of fear
- Began to have heart attack-like jolts of pain nightly that the docs still can't quite control
- Found a new resolve
- Wished for, rather than rued, the day that I'd actually turn 50
I can hardly believe it has been two years. Not that this time flew by because I was having fun, because much was not very fun, but it has flown by. Much of that was spent in a chemically induced haze, for sure. But most of the time was spent at home or in work while I was wide awake.
Still, two years ago, my difficulties swallowing during the summer and fall prompted me listen to my wife and see a doctor.
Dr. John Pfeiffer thought I might have a minor problem with my esophagus but doubted it was cancer. He referred me to Dr. Philip Styne, an amazing gastroenterologist. He conducted an endoscopy after which he told me, "There was some swelling. You may need surgery. We took biopsies."
Now, as you might expect, hearing the words We Took Biopsies isn't a good thing. It really freaked me out.
Next on my all-time hit parade was the introduction, very quickly, I might add, to CT scans and PET scans and iodine cocktails for contrast in the images, and then Dr. David Diamond, a radio oncologist and Dr. Lee Zehngebot, the premire oncologist in Central Florida, surgeon Joseph Boyer and a cast of thousands among Florida Hospital's cancer-fighting team.
In a whirlwind of events from the day I was told that the biopsies pulled by Dr. Styne were, in fact, cancerous to the start of my concurrent chemo and radiation therapies about a week later, my life was a haze.
I remember basically being fitted for my radiation therapies by having a CT scan so the doctors and nuclear physicists could determine exactly where to bombard my body with intense X-rays, having a medical "port" inserted into my chest in a minor surgical procedure that linked the outside world to my jugular vein, having my head shaved the morning of my first chemo treatment and many other milestones.
Good times.
Since then, the tumor in my esophagus was killed by the radiation, chemo kept cancer from traveling throughout my body, subsequent surgery the Friday before Christmas 2007 removed the by-then dead tumor from my entrails and my stomach was downsized by two thirds so part of it could become a faux esophagus.
And I launched this blog to help educate anyone who would read or listen about cancer of the esophagus.
Because my cancer was not genetic (to the best of my knowledge) and it was not sudden. Rather, it came about through a course of behavior conducted during much of my adulthood. Since my 20s, I'd had heartburn, sometimes severe heartburn, probably caused by poor eating habits. The state-of-the-art treatment of the time was Tums or Rolaids, or their generic clones, which I gobbled down regularly.
Only after I changed jobs and moved to Orlando did the acid reflux subside. I thought the new surroundings eased by stress, thus reducing my dependence on Tums.
Boy was I wrong.
Rather, my lower esophagus was being bombarded with so much acid that it tried to defend itself by developing cells similar to the lining of the stomach. The pre-cancer condition known as Barrett's Esophagus combined with my hiatial hernia was the perfect storm that led to my tumor.
Cancer of the esophagus in recent years has become one of the fastest-growing forms of the scourge. Partly, that's because the disease often is detected in its later stages, when eating becomes difficult. Remember, that's how come I went to the doctor.
Esophageal cancer is one of the most lethal. In Florida, according to the American Cancer Society's most recent statistics, 1,010 people died out of 1,170 people diagnosed with the condition. In the U.S., there were 16,470 new cases last year and of those 14,280 ended up six feet under. Not good at all.
There are some bright spots. The five-year survivability rate is 34 percent. That's more than double what it was before a new protocol was developed soon before I was diagnosed. Esophageal cancer remains the seventh-leading form of cancer among men It accounts for 11,250 lives, 4 percent of all male cancer deaths.
All of this leads to this:
Get help. If you have difficulties swallowing, get help right away. Do not wait. See your doctor, tell him or her your symptoms. Encourage an aggressive diagnosis and treatment. Insist upon it.
I'm now two years out. I plan to be around through years three, four and five.
I've helped several people through this blog and in person. So the effort has not been for naught.
And, to beat all that I'm about to turn 50. A couple of years ago, that was something I didn't think would happen.
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Monday, September 14, 2009
A solid Foundation
I'm quite thrilled and humbled that you did.
It's enabled me to donate to the Florida Hospital Cancer Institute, the organization that -- under the direction of the best doctors in Orlando -- I credit with saving my life.
Monday, I met with three representatives of the Florida Hospital Foundation -- each of whom works directly or indirectly with the Cancer Institute.
Jaclyn Lindsey, development specialist with the foundation, contacted me a little over a week ago with a bit of curiosity about the blog. With Jaclyn today were Kimberlee Strong, executive director of the Foundation; and Beth Schaan, another leader with the foundation.
I think our meeting was great for the three Florida Hospital Foundation execs and myself. They heard a lot of good things about their hospital and the doctors who saved my life -- John Pfeiffer, of Celebration, my family doctor; Philip Styne, the gastroenterologist who first discovered my tumor; Lee Zehngebot, my oncologist; David Diamond, my radi0-oncologist; and Joseph Boyer, the surgeon who pretty much had me as a fillet and then put me back together minus a dead tumor.
I told them my story and that I wanted to raise money for my cause, their cause.
They told me how the $150 I raised and any future money will be used, and about other ways they're trying to raise money.
The small donations such as mine will be bundled with others into a much larger pool. A committee of doctors and administrators then will pick something to buy and get it. Most recently they used this fund to purchase a state-of-the-art endoscopic ultrasound device.
As we advance in the whole wireless-wi-fi-blogosphere revolution, there's money to be made -- or raised for a charity. I found a way to do this with the blog -- a penny at a time, it seems -- and it would be great if other patients could do the same with their blogs.Jaclyn told me about another fund-raising method of the digital era. A donation via cell-phone text messaging. It's the latest, and it lets folks text donations $5 at a time. If you text the word FIGHT to 90999 you will be making a $5 donation to the Florida Hospital Cancer Institute -- the money will be billed to your cell phone. I encourage you to send the text.
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Monday, August 31, 2009
Tick. Tick. Tick. Tick. Tick. Tick. Tick. TIck. Tick.
Dr. Z said they haven't figured quite what is going on with my body, and all agree the best course of action for now is to wait. For three months. Then scan my body again.
"Nobody thinks we should do anything now," Dr. Z told me.
He was referring to himself; my gastroenterologist, Dr. Philip Styne; two initial radiologists; an interventional radiologist; and Dr. Styne's partner at the Center for Digestive Health in Orlando, Dr. William Mayoral.
They'd all gone over my CT scan and PET scan from earlier in August and come to the same conclusion: There's something in there and they're not quite sure what it is.
"Nothing we could do would help right now," Dr. Z told me, and, in fact, doing some things "could make the site worse."
So for now there'll be no endoscopic ultrasound, as Dr. Z had initially proposed, and the CT and PET scans will have to be sometime in mid- to late-November.
There might be an up-side to all this: for now ignorance is bliss -- if there is bad news I don't have to deal with it right now.
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Friday, August 21, 2009
So here's the deal

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Wednesday, August 19, 2009
And the results ... really aren't in

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Tuesday, August 18, 2009
Monday, August 17, 2009
I hate when that happens
After small talk about our toys -- his new iPhone and me about my G1 Google phone -- we discussed results of the scan and other medical issues (imagine that!).
They were not as I had expected. In the past, it's been S.O.P. for me to go in and hear that everything was fine with the scans.
This time, however, the results aren't clean. "I don't know what it is," Dr. Z explained.
That's because the radiologist who went over the scan and reported to Dr. Z wasn't quite sure, either.
It appears there's a 3 cm by 2 cm nodule of either fluid or something else near my stomach/esophagus that puzzled Dr. Matthew Hesh, D.O.
"It is difficult to determine if this represents a recurrent neoplasm lesion, adenopathy, or loculated fluid." Yeah, I don't understand most of that either.
But this I do understand: "I would suggest a PET scan for further evaluation."
So that's what Dr. Z has done. Stat.
Tuesday at 1 I have to be at the advanced nuclear medicine lab across Orange Avenue from the main Florida Hospital campus for what will be my third PET scan.
I have a few instructions to follow before the scan. Starting about midnight today I can't have sugar, caffeine and such stimulants. No exercise or anything strenuous, either. After about 7 a.m. Tuesday, I can't consume anything but meds and water.
Then when I get to the lab for the test, a nurse will hook me up to an IV (always fun) and inject me with radioactive glucose. This stuff is stored in something right out of Star Wars or Star Trek -- a metal canister that is turned until the radioactive liquid in a glass vial is released. It's injected via the IV and then I relax in a closed room for about an hour, listening to bad music, and then basically travel through a tunnel like an MRI. This machine, though, scans for concentrations of the injected glucose sugar. Cancer cells absorb the glucose faster than other types of cells, so the theory is they'd have gobbled the sugar up in enough quantities for the scanner to pick it up.
Hopefully, this nodule near the upper right lung area is nothing and the test will confirm that.
I'll keep you posted.
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Tuesday, July 21, 2009
Check out this site -- it's worth the click
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.
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A little Botox goes a long way

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Saturday, July 18, 2009
There's always room for Jell-o
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.
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