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.
Thursday, February 4, 2010
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.
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.
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?
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.
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.
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.
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