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!

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.

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.

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.

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.