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Monday, December 6, 2010

Three years, and counting

So, I'm in the office on Friday with oncologist Dr. Lee Zehngebot and he raised a very important point during the brief exam: "You know, it's been three years."

Those are three years I didn't believe I would have; I consider them bonus years. That's because when I first met Dr. Z, I didn't think I'd have much longer to live and, frankly, I didn't know if I'd want to live the tortured life I feared and envisioned. 

So I'll say it: He was right, I was wrong. I'm willing and happy to take that loss.

Dr. Z said the CT scan he ordered for a couple of weeks before our appointment came back clean. Perfectly clean.

That's great news, because many statistics for my esophageal cancer report on survivability three years post treatment. In the trials my treatment was based upon, which was coordinated by the Minnie Pearl Cancer Research Network, the survivability three years out was greater than 43 percent. Earlier esophageal cancer treatments rendered three-year survivors at about a third that percentage, and in many instances far lower.

Still, I'm beating the odds just by being alive today. Thanks to people like Dr. Z, Dr. Philip Styne, Dr. David Diamond, Dr. Joe Boyer, Dr. John Pfeiffer and Dr. Adriana Otto, in addition to the radiologists, nuclear physicists, technicians, nurses, therapists, family, friends, colleagues and those I'm failing to mention.

Basically, it took a village to keep me alive.

And here I am today, swallowing a bunch of pills each day, eating less, drinking more (water) but otherwise back to normal.

In the past few weeks, I've seen pretty much all of my docs and all say the same thing: everything looks good.

I have a couple of friends going through similar ordeals, and I just pray they can experience the same successes as I and that in three years, give or take, they can write the same thing.

Statistics being what they are, I hope to update this blog in seven years to say that I'm still here, doing fine and looking forward to more. I have a good chance due to my age and health condition in other areas. And according to the same trials, the projected survivability 10 years out is nearly 30 percent, meaning about a fourth of those still here today won't be in 2017. I plan to be one of those who will be here.

Dr. Lee Zehngebot shows off his iPhone a couple of years ago.
Back to my conversation with Dr. Z on Friday. As we almost always do, we discussed the technology of the day. He tried to make fun of my Motorola Cliq XT Android phone. "You call this a smartphone," he asked, grabbing my phone. "That's not a smartphone," he added, holding up his Apple iPhone. I asked whether it was the new iPhone 4 and he said no. Finally, I had the edge. "This time, my smartphone's smarter than yours," I replied.

To quote Sheldon, the character on "Big Bang Theory:" Bazinga!

Tuesday, October 5, 2010

Where has all the time gone? The acid reflux redux

It's truly hard to believe, to imagine, to have lived -- but three years ago this week I began an awkward two-steps-forward-one-back stumble to where I am today: healthy and wise, though still not wealthy. You know what they say about two out of three...

But seriously, A little more than three years ago I was confronted with the real possibility I wouldn't be here today. The dreaded "C word" crept into my life and quickly changed me from who I was to who I am.

Before, I overate with what I thought was impunity -- boy, was I wrong. Before, food couldn't be spicy enough. Before, I let stresses really get the better of me. Now, I monitor my intake and try to moderate it. Now, I still love and desire spicy foods, but limit the volume and veracity of my mouth-melting munchies. Now, I've walked through Hell so there's really not much that can get the best of me.

So it was three years ago, give or take, that I was diagnosed with stage T3, N0, M0 adenocarcinoma of my lower esophagus.

From the diagnosis, my entry into the world of high-tech, high-def medicine was rapid.

As I documented in this blog three years ago:
  • Dr. Philip Styne, the best gastro doc in Orlando, spotted the tumor at the base of my esophagus -- near the gastro-esophageal junction -- and sent me to the best person he could have: Dr. Lee Zehngebot.
  • Dr. Z walked me through what my next several months would be like. He told me about the chemo, radiation and surgery awaiting me.
  • Dr. David Diamond was next on my welcome to the world of cancer. He's a wonderful radio-oncologist and developed my radiation therapy. Together, Drs. Z and D had participated in a national trial of a new therapy to cure esophageal cancer developed through the Minnie Pearl Cancer Research Network based in Nashville, Tenn. So in Orlando I had the two perfect doctors to cure me.
  • They, plus surgeon Joseph Boyer, had handled dozens of similar cases and the project they'd worked on had increased the survivability percentage rate from the low-teens to the mid-thirties.
Yes, that's what I looked like after my
surgery in December 2007.
And it worked. With a few complications and setbacks, today I'm free of cancer. In the past few weeks I've seen Dr. Z, who gave me a clean bill of health but wants to keep an eye on me every four months or so. Dr. Styne did a recent check-up on me and said all looks good. He's shifting his focus and will work with Florida Hospital as it digitizes all of its records, so he's handed me off to one of his partners. And Dr. Boyer said all looks good after the original surgery and then three others -- all this year -- that were nominally related.

In the past three years, I've come to know some amazing people. Some were in the medical fields and others were the recipients of their treatments. I've also learned about several friends and relatives with some form of esophageal distress, including an aunt who developed the precursor to cancer called Barrett's Esophagus and a friend and professional acquaintance who just recently went through the wonders I experienced. Both of these are doing wonderfully, though a few other people I know or I know of didn't fare as well. In essence, this form of cancer is more common than one would think.

Esophageal cancer is out there and it is not going away. Americans, especially, are likely to see an increased incidence in the disease due to our wonderful "super-sized" eating habits. Greasy, fattening foods are supplying us with more than just the need for extra-extra-large pants. They are key ingredients in the development, over time, of Barrett's and the resulting cancer. Combine that with some salsa, pepper sauce and hot wings and here I am.

Call it the acid reflux reflex. Acid splish-splashes away in your stomach so much, fueled by those Buffalo wings. Some of those splashes seep up from the gastro-esophageal junction into the lower esophagus. You get heartburn and take a Tums. Feels better, more wings. After awhile, your esophagus responds. It tries to protect itself and physically alters -- stomach-like cells develop in the lower esophagus' lining to ward off those splashes. Barrett's esophagus is born. Since it is a mutation of cellular structure, it's not a far leap from Barrett's to cancer.

There are signs to notice. And precautions to take. If you've had heartburn and acid reflux for a while, see a doctor. Simple medications can and will help. If you haven't seen a doctor and the heartburn goes away -- get to a grastro doc quickly. That's a sign that you may have Barrett's and need immediate care.

According to the latest figures from the National Cancer Institute, nearly 10 Americans out of 100,000 developed cancer of the esophagus between 2003 and 2007. Of those, about eight were men. If you were under 20 you didn't develop this form of cancer, but folks of my age at the time accounted for more than 12 percent of the cases. During that period, 11 percent of the patients in my age group  died -- I was in the lucky 1 percent who survived.

Sadly, most people died of the disease during that period -- which was just as the treatment that saved me was coming online. So I'm sure later numbers will be better.

There are some good statistics, as well. While cancer of the esophagus was growing among Americans between 2001 and 2007 at 0.6 percent a year, it declined by 0.4 percent a year among women. And deaths from this type of cancer were down among men and women overall -- down 0.4 percent a year -- though that's mostly because of the decline in deaths among women of 1.6 percent a year. Deaths among men during that period were up 1.2 percent a year. Detection at an early stage is directly related to your chance of survival.

One sad note is that while the incidence of esophageal cancer is growing, funding is barely moving up. Federal funding for research into cures for this dangerous cancer has increased only $700,000 a year between 2004 and 2008, from $21.7 million to $22.4 million. That's just a sliver of a fraction of the total National Cancer Institute's $4.9 billion budget in 2008.

Here's a final note, and a warning, from the Institute three years after my diagnosis: "Based on rates from 2005-2007, 0.50 percent of men and women born today will be diagnosed with cancer of the esophagus at some time during their lifetime. This number can also be expressed as 1 in 200 men and women will be diagnosed with cancer of the esophagus during their lifetime."

Please don't be one of them.

Read through this blog and heed the warnings from myself and others. Have check-ups if you experience some of the things I experienced three years ago. And if you do have this cancer or know someone who does, feel free to contact me via a comment on the blog. If there's anything I can do to help, I will.

Saturday, August 7, 2010

Surgical strike IV: The unsung hero

Before I get into the surgery I had this Monday, Aug. 2, 2010, I have to talk about an unsung hero through every one of my surgeries at Florida Hospital.

Dr. Adriana Otto
(Photo: Florida Hospital website)
Dr. Adriana Otto has been with me before and after each of the four operations I have had. At first I didn't quite realize her role in my care, but I soon came to see what a vital part of my care team she has been.

And each time she sees me as I'm prepped for an operation -- hopefully Monday's was the last time we'll meet like that -- she really helps remind me of how lucky I am to have had such a wonderful group of doctors and nurses work toward saving my life. She also reminds me of what a blessing this added time is and has been.

Now, back to the surgery at hand -- or, rather, at abdomen.

Dr. Joseph Boyer, the major-league Yankees fan and amazing thoracic surgeon, needed to go into my abdomen and rip out the mesh holding my abs and other tissue together because either it had become infected or just wasn't sitting right with my body. He removed the mesh and stitched up the insides of my body by hand with actual stitches rather than using staples. He also sewed up my skin rather than using staples. I was released from Florida Hospital's cardiac step-down unit on Wednesday afternoon.

Dr. Otto was there the moment I arrived and throughout my time at the hospital. She checked up on me, gave me encouraging words and made sure I was fine before leaving.

As a hospitalist, the so-called specialty of tending to patients in hospitals, that was her job, of course. But she went beyond that. She explained how serious the threat to my life was in 2007 and how I survived for a reason. I guess I just have to figure out what that reason is and make sure it was worthwhile for all involved. I think I've been doing that, in part through this blog and in other ways.

As I told Dr. Otto on Wednesday, I hope I don't see her under the same circumstances anymore, but I do hope we bump into one another again. That's because she truly has been an important part of my new found life.

Thursday, July 1, 2010

Have a medical problem? Now you can be insured

This news release came out today from the Department of Health and Human Services. It will cover the uninsured who are without coverage due to a pre-existing condition.

News Release


FOR IMMEDIATE RELEASE

Thursday, July 1, 2010

HHS Secretary Sebelius Announces New Pre-Existing Condition Insurance Plan

Affordable Care Act Program to Provide Temporary Coveragefor Americans Without Insurance Due to Pre-Existing ConditionsNow Through 2014 When the New Insurance Exchanges Are Established

The U.S. Department of Health and Human Services (HHS) announced today the establishment of a new Pre-existing Condition Insurance Plan (PCIP) that will offer coverage to uninsured Americans who have been unable to obtain health coverage because of a pre-existing health condition.

The Pre-Existing Condition Insurance Plan, which will be administered either by a state or by the Department of Health and Human Services, will provide a new health coverage option for Americans who have been uninsured for at least six months, have been unable to get health coverage because of a health condition, and are a U.S. citizen or are residing in the United States legally.

Created under the Affordable Care Act, the Pre-Existing Condition Insurance Plan is a transitional program until 2014, when insurers will be banned from discriminating against adults with pre-existing conditions, and individuals and small businesses will have access to more affordable private insurance choices through new competitive Exchanges. In 2014, Members of Congress will also purchase their insurance through Exchanges.

“For too long, Americans with pre-existing conditions have been locked out of our health insurance market,” said Secretary Kathleen Sebelius. “Today, the Pre-Existing Condition Insurance Plan gives them a new option – the same insurance coverage as a healthy individual if they’ve been uninsured for at least six months because of a medical condition. This program will provide people the help they need as the nation transitions to a more competitive and fair market place in 2014.”

The Affordable Care Act provides $5 billion in federal funding to support Pre-Existing Condition Insurance Plans in every state. Some states have requested that the U.S. Department of Health and Human Services run their Pre-Existing Condition Insurance Plan. Other states have requested that they run the program themselves. For more information about how the plan is being administered where you live, please visit HHS’ new consumer website, www.HealthCare.gov.

“Health coverage for Americans with pre-existing conditions has historically been unobtainable or failed to cover the very conditions for which they need medical care,” said Jay Angoff, Director of the Office of Consumer Information and Insurance Oversight (OCIIO) which is overseeing the program. “The Pre-Existing Condition Insurance Plan is designed to address these challenges by offering comprehensive coverage at a reasonable cost. We modeled the program on the highly successful Children’s Health Insurance Program, also known as CHIP, so states would have maximum flexibility to meet the needs of their citizens.”

In order to give states the flexibility to best meet their needs, HHS provided states with the option of running the Pre-Existing Condition Insurance Plan themselves or having HHS run the plan. Twenty-one states have elected to have HHS administer the plans, while 29 states and the District of Columbia have chosen to run their own programs.

Starting today, the national Pre-Existing Condition Insurance Plan will be open to applicants in the 21 states where HHS is operating the program.

All states which are operating their own Pre-Existing Condition Insurance Plans will begin enrollment by the end of the summer, with many beginning enrollment today.

“The Pre-Existing Condition Insurance Plan is an important next step in the overall implementation of the Affordable Care Act,” said Richard Popper, Director of Insurance Programs at OCIIO. “We have been working closely with the states and other stakeholders to make sure this program reaches uninsured Americans struggling to find coverage due to a pre-existing condition.”

The Pre-Existing Condition Insurance Plan will cover a broad range of health benefits, including primary and specialty care, hospital care, and prescription drugs. The Pre-Existing Condition Insurance Plan does not base eligibility on income and does not charge a higher premium because of a medical condition. Participants will pay a premium that is not more than the standard individual health insurance premium in their state for insurance that covers major medical and prescription drug expenses with some cost-sharing.

Like the popular Children’s Health Insurance Program (CHIP), the Pre-Existing Condition Plan provides states flexibility in how they run their program as long as basic requirements are met. Federal law establishes general eligibility, but state programs can vary on cost, benefits, and determination of pre-existing condition. Funding for states is based on the same allocation formula as CHIP, and it will be reallocated if unspent by the states. Unlike CHIP, there is no state matching requirement and the federal government will cover the entire cost of the Pre-Existing Condition Plan. While it took more than 6 months for a small number of states to establish their CHIP programs, we anticipate that every state will begin enrolling individuals in the Pre-Existing Condition Plan by the end of August.

Information on how to apply for the Pre-Existing Condition Insurance Plan is available at www.HealthCare.gov. Americans who live in a state where the U.S. Department of Health and Human Services is running the Pre-Existing Condition Plan will be linked directly to the federal application page. Those living in states running their own programs will also find information on how and where to apply on www.HealthCare.gov.

To learn more about the Pre-Existing Condition Insurance Plan and options available to residents of your state, visit www.HealthCare.gov.

An informational pamphlet on the Pre-Existing Condition Insurance Plan can be found at: http://www.healthcare.gov/center/brochures/pcip.pdf.

States by Pre-Existing Insurance Plan Administration

29 states plus the District of Columbia have chosen to operate their own plans.

Alaska, Arkansas, California, Colorado, Connecticut, District of Columbia, Illinois, Iowa, Kansas, Maine, Maryland, Michigan, Missouri, Montana, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Dakota, Utah, Vermont, Washington, West Virginia and Wisconsin.

21 states elected to have HHS run their plan.

Alabama, Arizona, Delaware, Florida, Georgia, Hawaii, Idaho, Indiana, Kentucky, Louisiana, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, North Dakota, South Carolina, Tennessee, Texas, Virginia and Wyoming.

###

You also can check out the news release online at http://www.hhs.gov/news.

Catching up on the past few months

OK, so who said doctors and nurses don’t have a sense of humor.

For example:

The home-health telephone nurse from United HealthCare (motto, we put the Hell in HealthCare) calls to check on me and let me know all about their care options for my post-surgical needs.

The first thing she says, and I am not making this up: “To protect your privacy, this call may be monitored.”

Me: “Whoa, hold up. Let me get this right. To protect my privacy, you’re recording this call. [Emphasis accurate.] How is that protecting my privacy?”

She corrected her statement.

Then she explained that to comply with HIPPA regulations, I need to give her my address to confirm who I am.

Me again: “I’ve rejected HIPPA at all levels of treatment, from you guys (United HellthCare) to my doctors, hospitals and anyone else who would listen. I do not want HIPPA protections.”

HIPPA, by the way, is a federal law designed to protect patient privacy. In general, it’s not a horrible idea. It keeps hospitals from releasing information about you to callers unless you opt out. As a journalist, it gets in my way far too often when checking on gunshot victims or car-crash victims. So I remove that barrier for my friends just out of principle. When the hospital asks me who I authorize to call and ask about my condition, I always write "everyone." It's pretty simple. So simple, even bureaucrats and hospital wonks can understand it.

Nurse: “Well, I need this for HIPPA …”

I cut her off: “I don’t want HIPPA protection. I reject it. You don’t have to worry. It does not apply to me.”

She said it was company policy. I told her that her company gets in the way far too often for my liking and I don’t care about her company policy.

I also explained that she called me. To protect my privacy from ID theft, I don’t give out personal information to people who call me. If I call someone like a bank or an insurance company -- I know who I dialed, after all -- I will provide information to verify who I am.

Me: “You called me. You have my number. You know who I am. I am not giving you personal information”

Her: “Do you want me to add you to a do-not-call list?”

Me: “Yes, please.”

Somehow she was able to do that without verifying who I was.

She’s going to mail me the information she couldn’t talk about over the phone. I'll just toss it.

But to catch everyone up, the reason I received this call in the first place, after missing several over the past few months, is because I had surgeries in January, as noted earlier in the blog, and then again in March, which, oops, I haven’t updated.

The March surgery, again by Dr. Joseph Boyer -- the best thoracic surgeon in Central Florida in my oh-so-humble opinion -- was to repair an incisional hernia in my belly that developed at the site of my original surgery 2½ years ago. I’d been doing yard work and, well, my belly didn’t like that.

I did ask if he had a buy two get one free policy with surgeries. Nope, he doesn't.

So the doctor performed the operation in March and I was out of work for a week to recover. (Seriously, two weeks would have been best, but I didn’t want to blow all my vacation time.)

Still, I did recover, though I may need more work to have this incisional hernia fully repaired.

In the interim, I've had numerous tests.
  • My CT scan of my neo-esophagus came back negative -- Dr. Lee Zehngebot says after one more scan in about a month I won't have to see him three to four times a year; it'll be about once every six months.
  • An endoscopy came back negative -- Dr. Phil Styne said everything between my mouth and intestines looked good. No cancer, no problems, though no pylorus -- he couldn't spot my pyloric valve though he knew it's there. Go figure.
  • A cardiac-stress test came back negative -- Dr. Egerton van den Berg said my heart had no clogs and everything looks good. Safe to do some workouts and work -- as long as I don't move anything heavy and damage the incisional hernia.
  • A respiratory test came back negative -- Dr. Dennis Stevenson says my lungs are at the low end of normal after a chunk was removed in January, but still in the normal range. I don't need lung meds or respirators or inhalers. Whew!
  • My cataract implants are all better -- they had some cells growing on them but a few laser zaps by Dr. Donald J. Centner cleaned them off and I see better than ever.
That's a lot of doctor visits. Some of those incidents involved two and three visits and there were weeks where I was literally in one doctor's office or another every business day of the week.

I was at the doctor so often that I just didn't have enough time to update this blog. Not that I didn't want to, but it was hectic.

Also in the interim, a few friends have had encounters with cancer. I won't name them to protect their identities until I know they'd want me to mention them. (See, I'm implementing HIPPA protections for these friends.)

One has the same type of cancer I did. He's seeing Dr. Z and already has gone through his chemo and radiation. He's kicked butt and is doing great. Surgery is next, and I think he'll be seeing Dr. Boyer. (I reminded him once to mention how great the Yankees are, which will get him on the good side of Dr. B, a major-league Yanks fan!)

A second is undergoing chemo and surviving the ordeal well.
Another is in wait-and-see mode as docs have uncovered potential for cancer but have him being checked regularly to see if it develops.

And a fourth recently had surgery between the ears and has recovered remarkably well.

To each of these guys, I offer my sighs of relief and best wishes that the worst is behind them.

Because I know each can kick this thing's ass. They're all strong men who have petty logical and positive attitudes. And that's one of the strongest assets someone needs as they fight to be CancerVivors.

Thursday, February 4, 2010

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.

Wednesday, January 27, 2010

Dr. Z turns a frown upside-down

What is it about Dr. Lee Zehngebot, the amazing oncologist from Orlando?

Even as he feeds me somewhat less-than-great news it turns out to be really good news.

Dr. Z called a short time ago to let me in on some news garnered from this morning's tumor board meeting.

Turns out that the tumor pulled from my chest last week was not a spindle-cell carcinoma, a very rare malignancy. That's the great news. Really great news.

It was, however, a desmoid tumor, which also is rare but is not malignant. Not cancer.

"A desmoid is a growth of cells that is not malignant," Dr. Z said. "The bad news is there's a chance it will come back."

And after doing some reseach since his call, it's a good chance a desmoid will return.

They most commonly arise near scars due to abdominal surgery, according to WebMD. They also are "locally aggressive" and can cause trouble for nearby tissue, especially muscles. "Desmoid tumors tend to infiltrate adjacent muscle bundles, frequently entrapping them and causing their degeneration," eMedicine reports.

"This course and the tendency for recurrence make the treatment of these relatively rare fibrous tumors challenging."

Of course, I'm always up to a challenge.

I'll visit Friday morning with Dr. Z and we'll figure out a way to monitor the growth of these things. I presume it will be with continued CT scans, which picked this sucker up during the summer and recorded its growth a few months later.

So the really good news -- no malignancy -- was marred a smidge by the fact that I have a new nemesis to keep an eye on.

Monday, January 25, 2010

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.

Wednesday, January 20, 2010

Odds and ends

Except for the surgery and related pain, my stay at Florida Hospital has been filled with stories of courtesy, kindness, and at least one example of just the opposite.

First, the good.

Surgical prep nurses. They have a tough job with immediate deadlines and still make patients feel like human beings.

Cardiac step-down nurses. After a day and a half stepping down, I had one of my so-called "fart attacks" -- which caused a lot of sweat. Two words after that -- sponge bath.

ICU nurses. Beside another sponge bath, these ladies and gentlemen are amazing at what they do. Last night, when an alarm went off just about the entire staff converged at the room of an 100-year-old woman. She didn't make it, but that is not because of this team's efforts.

Now the bad

An unnamed former doctor of mine. Now up until today this doctor seemed a caring, focused man. Today, as he explained what was wrong -- a diagnosis Dr.Lee Zehngebot had come to more than a year ago -- spasms of cardiac arteries, a form of angina -- I pointed out, "I told you guys about this over a year ago." His response: "Now I believe you" So, for a year, I have been having the most horrible pains I've ever experience because...what? I cannot even fathom an excuse.

Any ideas out there?

Well, turns out it is a cancer

I learned two things yesterday about the 6 cm by 5 cm mass pulled ftom my chest Monday:

First that it likely is a rare form of tumor called spindle-cell carcinoma and that it most likely has all been removed from my body. It is so rare, in fact, that it stealthily hid in my body past two PET scans designed to detect fast growing tumors like this.

Second, that it was likely not the cause of those faux heart attacks -- or fart attacks as I like to jest. Rather they are likely caused by something diagnosed by Dr. Lee Zehngrbot -- my oncologist -- more than a year ago: cardiac arterial spasms.

Apparently they really were not being taken seriously until I had two of them in the hospital, one Monday on the operating table that freaked out thoracic surgeon Dr. Joe Boyer.

He called in my new favorite cardiologist, Dr. Cal Weaver.

So now I am in the cardiac ICU for a day so they can stabalize my blood pressure and figure out what is going on with my heart.

As for the tumor, the pathology tests should be in later today.

Tuesday, January 19, 2010

Post-op party? OK wouldn't go that far

It is nearly 4:20 a.m. Tuseday, about a day after I started Round 2 of surgery here at Florida Hospital.

Went to Rapid In and Out a bit before 5 yesterday. Thankfully I didn't have paperwork to fill out. That was done last week.

Soon I am in a prep room not far from the one I was in a little over two years ago. A couple of notable moments: Warm blankets and "Shave and a chest cut, two bits!" The tech comes in to shave my chest and side and i aked him to avoid a lirrle skin tag on my chest, and he did. Remarkable because when I asked last time the request was ignored. Further, after the young man was nearly done I asked if he could balance me out and shave the other side. He did, gladly.

IV and main lines were injected and before you knew it -- or better phrased, before I knew it -- i was out like a light.

I awakened in post-op recovery, were a person to my left was in far graver shape than I. There was no one to my right, until a 5- or 6-month-old child was wheeled in on a gurney topped with a crib -like contraption.

Soon enough I was ready to move to a room, but there was a "code blue" on the way and so I had to wait.

Finally I was brought to my room, 8840.

As described in an earlier post, it is quite amazing: Wide-screen TV, a view of the sunset to -- um -- live for, and a great nursing staff.

The one downer of the day came when I found out the thumb-size "soft-tissue mass" in me was far larger than thought -- as if you' attached four thumbs together like a raft of thumbs. (Do i get a refund on the CT scan or radiology report from August or December?)

And it no longer is a mass but a tumor -- hopefully benign.

Hopefully, I will find that out today.

Sunday, January 17, 2010

Pre-surgery update

Well, in the past week a lot has happened.

I did make an appointment and saw Dr. Joe Boyer on Wednesday. We agreed I need surgery to remove the "soft tissue mass" that he said is adjacent and possibly affixed to the exterior of my "neo-esophagus."

He explained the risks of said surgery as well as his likely method. Dr. Boyer first will try to operate laparoscopically, by making three small incisions to my right side and going in with a camera and itsy-bitsy tools. Yes, that is the technical term.

If that doesn't work out, my side will again become a slab of flank steak and be sliced open so he can get hold of the growth and yank it out.

The surgery should take a couple of hours.

I have been to Florida Hospital, poked, prodded, peed in cups, oozed blood and glowed in the dark in preparation for my operation early -- very early -- Monday morning.

Tonight and again about 4 a.m. I have to shower with a medicated soap to kill anything alive on my upper torso.

After the morning shower I go to the hospital by 5 a.m. to prepare for the 7:30 a.m. operation.

When I awaken several hours later, I will be in the ICU. There I will still have a foley catheter and a main line into my aorta.

Once I move to a real room, I will be in the hospital's spanking new tower, with its 42 inch flatscreen TVs and unlimited cable and internet and video games.

Of course I will probably be too stoned to enjoy it all.

I should be hospitalized three or more days, depending on the type of surgery Dr. Boyer employs.

Saturday was my last day at work before starting short-term disability. Hopefully I will return sooner rather than later. I will miss my friends and colleagues during my absence but will keep in touch by phone and email.

So here is to hoping today isn't the last day of the rest of my life and that tomorrow's early morning procedure goes smoothly.

Till we meet again!

Sunday, January 10, 2010

Surgery is next step

Dr. Joseph Boyer and I chatted Friday about my situation. He was teetering as to whether to order surgery.

Generally he'd have considered waiting but because i am symptomatic -- my pains continue, only more frequently and with more severity -- he said the surgery is justified.

But he warned that there are risks, namely the surgery will hurt -- no way around that. In addition, it may not stop the faux heart attack as I call them. Finally, he pointed out, the surgery would be so close to his previous masterpiece -- my resected sliced and diced stomach-esophagus hybrid -- that it could cause damage there.

Those are all valid concerns I was weighhing over this weekend.

Until this morning.

That was when I had another incident. The pain convinced me that I really need to make a change. It is so unbearable that I decided right then to phone Dr. Boyer on Monday and schedule the surgery.

I figure the pain outweighs the risks. If I am destined to a lifetime of pains as severe as I have had -- in medical parlance a 10 to 11 out of 10 -- I am not sure whether I would forgive myself for not taking the chance.

So I imagine that after arranging things at work and getting an estimate from Dr. Boyer as to how much time I will need, the surgery will be scheduled relatively quickly.

Hopefully that will put an end to more than a year of these horrible heart attack symptoms.

Wednesday, January 6, 2010

Glow-in-the-dark editor

I had a CT scan this morning to see if that soft-tissue gelatinous mass adjoined to the outside of my esophagus has grown in the past month.

The scan was requested by Dr. Joseph Boyer, the chief of thoracic surgery at Florida Hospital. He is trying to determine whether to remoce the mass from my body and if so, whether to remove it endoscopically or surgically.

His colleagues discussed my case last week after receiving results of the biopsy taken before Christmastime, which determined cancer was not the issue because it came back negative.

So Dr. Boyer will first determine whether there was growth and if so whether it warrants removal, then determine how.

When we spoke last week, he told me he was somewhat perplexed, saying he'd never come across such a case before. He seemed to think I probably would end up in surgery but had to exhaust all possibilities first because of the dangers involved.

The would-be surgical site in my body is adjacent to the spot where two years and two weeks ago Dr. Boyer dissected my stomach, removed most of my esophagus and then took all the remaining parts and made a pull-through esophagus-stomach hybrid. So he doesn't want to damage the great job he'd already done. Plus, the area is close to the lungs and heart in my chest.

As Dr. Philip Styne told me, "there is a limited amount of space" there.

So I should find out in a couple of days what might be in store.

Happy New Year!