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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!