Not sure if I ever mentioned in detail my experience with these faux heart attacks I've been having lately.
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.
Tuesday, November 10, 2009
Thursday, October 1, 2009
The check was in the mail
Finally, I was able to follow through on a pledge to make a donation to Florida Hospital Cancer Institute.
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.
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.
Monday, September 21, 2009
Yes, it's been two years
In the past two years, I have:
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.
- 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.
Monday, September 14, 2009
A solid Foundation
I've repeatedly asked friends, family, colleagues and others to support sponsors of my blog and learn from the information they provide.
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.
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.
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.
Monday, August 31, 2009
Tick. Tick. Tick. Tick. Tick. Tick. Tick. TIck. Tick.
I heard more from Dr. Lee Zehngebot the other day, who explained more about what he and, apparently, several other doctors have not found.
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.
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.
Friday, August 21, 2009
So here's the deal
I had a good conversation with Dr. Lee Zehngebot on Thursday evening, who explained what they know -- and don't know -- about what's going on in my body.
Dr. Z said he consulted with a radiologist and they both agreed that I'm just going to have to be confused and frustrated for about three months.
That's because it's safer for me to wait that time and have a new series of CT and PET scans that it'd be for doctors to punch holes in my body to extract biopsies from where they'd need to extract them. A CT scan last week showed a 2cm by 3cm thingie in my chest, not far from the body cavity where the esophagus, the pulmonary artery and other important organs are located. A PET scan this week lit up a tiny spot in my carina in the bronchial airways that may or may not be something to worry about.
But pulling a biopsy from either site has risks and Dr. Z said the safer course is to wait. And wait. And wait.
"I know I'm scaring the crap out of you. But I'm in the scaring-the-crap-out-0f-you business," he told me.
One upside, though, is he wants me to have yet another endoscopic exam, but this time using E.U.S., which is endoscopic ultrasound. Basically, they'd be looking at these growths from the inside-out and that might help the docs determine the density of these masses or what they are.
My gastro-doc extraordinaire, Dr. Phillip Styne, doesn't do these procedures, but one of his partners does, and I'll be calling Dr. Styne on Monday to set things up.
So for now, to quote the Three Stooges, it's time to "hurry up, and go to sleep," or in my case, I guess, hurry up, and slow down.
Wednesday, August 19, 2009
And the results ... really aren't in
I really hate waiting -- especially for something as important as test results.
What's even worse is waiting after you receive test results. But that's what I have to do. The question now is how long of a wait?
Here's why:
Dr. Lee Zehngebot, the most excellent oncologist and iPhone user I can think of, said this evening after I waded through 35 minutes of phone-hold hell that my PET scan Tuesday found a "very small" anomaly in my chest. So small that doctors don't quite know what to make of it.
Dr. Z said he'd probably just have me wait three months and do another series of CT and PET scans. But he's consulting with other docs to see whether a biopsy would be worthwhile. I'll find out that answer on Monday.
The small mass may or may not be the 2 cm by 3 cm blob a CT scan picked up last week. I'm going to call Dr. Z on Thursday with a few questions I've come up with.
The mass picked up by the PET scan is located in the carina, which is the bronchial windpipe where the bronchi split into the two lobes of the lungs at the base of the trachea. (See diagram, courtesy of Wikipedia.)
"We don't know what it is," Dr. Z said.
Thus, my results that really aren't results.
So the waiting continues. Ugh!
Tuesday, August 18, 2009
Monday, August 17, 2009
I hate when that happens
So I saw Dr. Lee Zehngebot today, a week after my most recent CT scan.
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.
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.
Tuesday, July 21, 2009
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.
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.
Saturday, July 18, 2009
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.
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.
Thursday, June 25, 2009
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.
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.
Tuesday, May 26, 2009
A great big sigh of relief
After my first visit with Dr. Phillip Styne since an endoscopy in January, I have one word: Whew!
That's because Dr. Styne affirmed Dr. Miner's observation that my chest pains were, indeed, caused by spasms to my esophagus. He said the nitroglycerin-based meds I'm on do relax smooth-muscle tissue such as a heart -- its most common destination -- and the esophagus.
With that behind us, along with a brief amount of schmoozing, we agreed I won't have to see Dr. Styne for four months, and I most likely will not need another endoscopy until January, a year after the previous one.
In other words, my body finally is healing as it should. Before all this began, the docs said it would be a long road and would take a year or two for me to heal. They were not wrong.
With the expertise of my medical team, Dr. John Pfeiffer, Dr. Styne, Dr. David Diamond, Dr Lee Zehngebot, Dr Joe Boyer and many other docs and nurses and techs and assistants, I'm pretty much back from the brink.
In September 2007, I wouldn't have believed it. The news was so grim, the odds so low and external factors in the tank, I wasn't hopeful at all.
But today, I must say my optimism is back. I might even think about buying some stock. Well, that one I'd have to think about.
That's because Dr. Styne affirmed Dr. Miner's observation that my chest pains were, indeed, caused by spasms to my esophagus. He said the nitroglycerin-based meds I'm on do relax smooth-muscle tissue such as a heart -- its most common destination -- and the esophagus.
With that behind us, along with a brief amount of schmoozing, we agreed I won't have to see Dr. Styne for four months, and I most likely will not need another endoscopy until January, a year after the previous one.
In other words, my body finally is healing as it should. Before all this began, the docs said it would be a long road and would take a year or two for me to heal. They were not wrong.
With the expertise of my medical team, Dr. John Pfeiffer, Dr. Styne, Dr. David Diamond, Dr Lee Zehngebot, Dr Joe Boyer and many other docs and nurses and techs and assistants, I'm pretty much back from the brink.
In September 2007, I wouldn't have believed it. The news was so grim, the odds so low and external factors in the tank, I wasn't hopeful at all.
But today, I must say my optimism is back. I might even think about buying some stock. Well, that one I'd have to think about.
Thursday, May 21, 2009
Bloody Well Right (with apologies to Supertramp)
Wednesday was a watershed day for me in a couple of ways.
First, it was the first time since my cancer diagnosis that I made a blood donation. I hope the people who receive my donation use it in good health.
Second, it was sort of an affirmation that I am healthy. I received the blood center's seal of approval to prove it -- they took my blood, after all.
Not long ago, if you had certain cancers and were treated with either chemo or radiation, you had to wait five years before donating blood -- if you lived that long.
Today it's just a year.
So in another eight weeks I'll go to work early when the bloodmobile shows up at the Sentinel and make another donation. I've always liked giving blood -- besides helping others, I just always feel physically better afterward.
And I encourage you to make a donation if medically able. Call the blood center nearest you to see if you and your particular medical issues would keep you from donating. If they do, perhaps a year from now you'll be better able to make a donation.
First, it was the first time since my cancer diagnosis that I made a blood donation. I hope the people who receive my donation use it in good health.
Second, it was sort of an affirmation that I am healthy. I received the blood center's seal of approval to prove it -- they took my blood, after all.
Not long ago, if you had certain cancers and were treated with either chemo or radiation, you had to wait five years before donating blood -- if you lived that long.
Today it's just a year.
So in another eight weeks I'll go to work early when the bloodmobile shows up at the Sentinel and make another donation. I've always liked giving blood -- besides helping others, I just always feel physically better afterward.
And I encourage you to make a donation if medically able. Call the blood center nearest you to see if you and your particular medical issues would keep you from donating. If they do, perhaps a year from now you'll be better able to make a donation.
Monday, May 11, 2009
Changing meds, soon changing docs
I saw Dr. James Miner, my cardiologist, today.
The visit was to check out the chest pains I've had the past few months. They're the same one that led me to Dr. Miner in December -- the ones that led to my catheterization. My EKG looked normal to the doc, and said the pains are more likely caused by my digestive system than my heart. That's a good thing for sure.
He did add a med and told me to drop another. Now I'm taking nitroglycerine tabs twice a day, but no longer taking hydrochorathalazide, or whatever it's called. This should ease the pains, since nitro works with the arteries of the esophagus and stomach just as it does with the heart. It also drops blood pressure, thus the change in BP meds.
Sadly, Dr. Miner also told me he's leaving the practice he's been with since 1990. He said he's moving over to a practice in The Villages up near Lady Lake -- a vast senior development that straddles three counties. While parts of Florida's population are declining, people still are moving into The Villages.
He plans to commute. Ouch.
I'll see Dr. Miner again on June 1, but that likely would be the last time as doctor and patient. He's a good guy and I'm sorry my time as his patient has been so brief -- though not needing a cardiologist until this time certainly isn't a bad thing.
I plan this weekend to toast Dr. Miner at breakfast -- a cup of juice, wheat bread smeared with heart-friendly spread, egg white omelette and a cup of oatmeal.
Cheers, Doc!
The visit was to check out the chest pains I've had the past few months. They're the same one that led me to Dr. Miner in December -- the ones that led to my catheterization. My EKG looked normal to the doc, and said the pains are more likely caused by my digestive system than my heart. That's a good thing for sure.
He did add a med and told me to drop another. Now I'm taking nitroglycerine tabs twice a day, but no longer taking hydrochorathalazide, or whatever it's called. This should ease the pains, since nitro works with the arteries of the esophagus and stomach just as it does with the heart. It also drops blood pressure, thus the change in BP meds.
Sadly, Dr. Miner also told me he's leaving the practice he's been with since 1990. He said he's moving over to a practice in The Villages up near Lady Lake -- a vast senior development that straddles three counties. While parts of Florida's population are declining, people still are moving into The Villages.
He plans to commute. Ouch.
I'll see Dr. Miner again on June 1, but that likely would be the last time as doctor and patient. He's a good guy and I'm sorry my time as his patient has been so brief -- though not needing a cardiologist until this time certainly isn't a bad thing.
I plan this weekend to toast Dr. Miner at breakfast -- a cup of juice, wheat bread smeared with heart-friendly spread, egg white omelette and a cup of oatmeal.
Cheers, Doc!
Monday, April 27, 2009
Mostly a clean bill of health
Got back from Dr. Lee Zehngebot's office a short time ago, and I received some very good news.
My CT scans earlier this month showed no signs of improper tissue mass anywhere in my chest or abdomen.
This means no cancer. The past year and a half of physical, radioactive and chemical torture seems to have worked. It also left some odd "scars" inside my body. Like a liver that was "cooked" a little too well done by the radiation. Lungs that also were sauteed by some isotope and produce a little bit too much fluid along with the oxygen my body needs.
Because there's so much going on in my scan, the docs want another one before my next appointment with Dr. Z in August. Soon I'll be glowing in the dark, if I don't already.
And then there's my heart. Dr. Z said my recent weirdness in that arena might be caused by coronary spasms and he'd like some more tests done with Dr. James Miner. Not sure what's going to happen, but I presume I'll find out soon.
But as for my CT scans, everything looks good, the doc said. The report from the radiologist said everything pretty much looks as expected. I just wish they'd expected, oh, maybe someone in better shape with a smaller gut. Then I'd be really happy with those findings. Though I am quite pleased with the findings. Dr. Z was pleased as well, though harried in his new set-up.
Oh, speaking of Dr. Z, he has new digs down the Florida Hospital Plaza hallway from his previous office. Not that the practice moved, just his partners moved him into an office all to his own.
Yes, he's just that good.
As one nurse said to me, "This is like the Hilton" compared with his old office.
And, I'm guessing, the rest of the practice wants to use PCs, not Macs.
My CT scans earlier this month showed no signs of improper tissue mass anywhere in my chest or abdomen.
This means no cancer. The past year and a half of physical, radioactive and chemical torture seems to have worked. It also left some odd "scars" inside my body. Like a liver that was "cooked" a little too well done by the radiation. Lungs that also were sauteed by some isotope and produce a little bit too much fluid along with the oxygen my body needs.
Because there's so much going on in my scan, the docs want another one before my next appointment with Dr. Z in August. Soon I'll be glowing in the dark, if I don't already.
And then there's my heart. Dr. Z said my recent weirdness in that arena might be caused by coronary spasms and he'd like some more tests done with Dr. James Miner. Not sure what's going to happen, but I presume I'll find out soon.
But as for my CT scans, everything looks good, the doc said. The report from the radiologist said everything pretty much looks as expected. I just wish they'd expected, oh, maybe someone in better shape with a smaller gut. Then I'd be really happy with those findings. Though I am quite pleased with the findings. Dr. Z was pleased as well, though harried in his new set-up.
Oh, speaking of Dr. Z, he has new digs down the Florida Hospital Plaza hallway from his previous office. Not that the practice moved, just his partners moved him into an office all to his own.
Yes, he's just that good.
As one nurse said to me, "This is like the Hilton" compared with his old office.
And, I'm guessing, the rest of the practice wants to use PCs, not Macs.
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