Monday, December 31, 2007
Remember to monitor your body and visit your doctors if something just doesn't seem right. And, of course, keep in mind that heartburn can cause cancer, so if you've had a lengthy problem in the realm of digestion, please take care of it. You could avoid all the crap I've gone through these past several months. You could avoid heartburn caused by your medical status.
You could avoid death.
So please be safe tonight and tomorrow and join me in a new year that has to be -- without a doubt -- better than 2007 was.
Good night and good luck to all.
What would Homer Simpson say about this non-flavored (artificially or otherwise) high-protein, high-calorie food substance? Sure as heck it wouldn't be "Mmm, Jevity."
I had more X-rays shot this morning and hopefully they'll show some movement in the foods and fluids in my stomach, which, I presume, would lead to me being able to eat food once again. I kinda miss even the nasty hospital oatmeal, which is pretty pathetic. It is the worst oatmeal I've ever had.
I will offer some in-hospital meal tips at a later time, and be sure that the fish dinners will be close to the top of my faves and the breakfasts will be among the lowest scorers. It's so hard to believe any professional cook or chef or dishwasher could flub something so simple.
I'll update later, when I hear from my docs what is going on. And if I hear from Homey with his noble opine of Jevity or rival Nutren, I'll be sure to make note of it in this space. After all, these products might have some redeeming benefits beyond the medical world. We just haven't discovered it yet.
Sunday, December 30, 2007
I had X-rays taken today but didn't have the barium swallow test. Maybe tomorrow. They show that not much is progressing from the stomach. Imagine me not digesting food. Food is one of my favorite things...so how is this possible?
But other than the stomach issue, my health seems to be returning. I feel as if I am breathing easier after a week of difficulties, and I'm requiring fewer and fewer doses of pain relievers. Whew!
So once this situation is resolved and my diet is restored I'm guessing I'll be able to go home.
Saturday, December 29, 2007
But a new snag cropped up today and it has led me back to the food pump and a barium swallow test Sunday morning. Can't wait.
Seems the food I've been eating has either moved from my newly constituted stomach too slowly or not at all. The docs want to see where the holdup is, thus the barium test.
On a sad note, Dr. Grobler checked in yesterday, then checked out ... possibly for good. (I shot the accompanying photo in the Florida Hospital ICU, scooping the hospital's PR folks, who don't even have his photo on their Web site.) He's moving out West to be closer to his parents and has some tough jobs ahead in that regard. Dr. Grobler is one of the good guys, and it's a shame I met him under these circumstances and also so late in his tenure in Central Florida. He's the kind of guy you'd want to be friends with. So Doc, thanks again for helping save my life. It won't be forgotten.
Time still seems to drag on, so it has been nice to have had a few visitors over now that I'm out of ICU. Susan J, Sarah L, Sara F and Willow, thanks. It was nice. While in the ICU, my family was there often, and they helped me get through the days, like the one captured in the picture below shot on Christmas as the gang visited.
Thursday, December 27, 2007
I'll try to reflect on the past week as best I can, moving on from the GoLytely prescription.
Friday morning, I confess I was scared out of my mind. What if the doc nicks the aorta. What if there's just a smidge too much happy juice? All those what ifs. All running through my mind at the same time. Like a what-if overload.
Thankfully the what ifs never happened, and Dr. Boyer & Co. did exactly what they were supposed to do -- and then some. Dr. Boyer additionally did more biopsies of the liver; hey, he was in there anyway, right?
I don't exactly remember the moment I woke up, but I didn't follow my planned script and ask, "Who am I? What am I doing here?" I mean, I might have but I don't recall.
Since awakening, though, I've had quite an experience at Florida Hospital. They mostly kept me well medicated to keep pain to a minimum. The hint at left to tell the nurses your pain is at 8 of 10 is a very good one. Especially if your pain is 8 of 10, as mine frequently is.
They're keeping me comfortable with Percocet and Dilaudid, and between the two I confess to being a little loopy from time to time. (No comments from the peanut gallery, please!)
What I can say about being in the ICU at Florida Hospital is that time drags on so slowly one cannot comprehend. There were times at night where I fell asleep and when I woke up seemingly refreshed I checked the time on the clock or TV to realize I'd been out for 10 minutes, sometimes less. I had an array of mind activities, such as crosswords, Sudoku puzzles, electronic gizmos, Palm Pilot kinda thingies and they occupied my mind briefly. Just couldn't stay focused while on the chemicals.
So the TV and I became buddies. TV Land, TNT, etc., our daily activities.
I was moved from the ICU to the Cardiovascular Progressive Care Unit on Wednesday. It's a small, private room and the folks are nice, though the first few hours were pretty bad. I hadn't had pain pills as planned at 3, and when I told the nurse she was going to go the the meds. She didn't return. I called. She didn't return. Took until about 4:30 to get the medication. She explained she was busy adding three new patients to the floor, two of whom were very serious. I had to lecture her about the next time she has two incisions, about 45 staples and 8 of 10 pain she can judge whether I was uncomfortable and as for seriousness, my doctor, a heart surgeon, said this is far more difficult a surgery than bypass type operations. Which is why it takes about 4 hours or longer. After that, she set up a schedule for my pain pills, and kept to it.
I'm sure I'll have more insights to add once I can remember them.
Thursday, December 20, 2007
I continue to hope and pray that it has helped more than it hasn't. My usual mantra remains: Heartburn can cause cancer, so make sure you get a checkup. And if you're having trouble swallowing, hurry to a gastro doc.
The Florida Hospital Cancer Institute's thoracic cancer program says this of esophageal cancer: "Esophageal cancer is increasing faster than any other cancer, and is among the most deadly cancers." So I hope you take symptoms such as difficulty swallowing and severe heartburn seriously.
Your life could depend on it.
I spoke to Dr. Grobler just a few minutes ago and he said he was sure he hit the right spot, and it appeared the tissue retrieved was damaged or irritated by the chemo and radiation treatments I had for more than five weeks. As Drs. Z and Diamond suspected.
So at 5:30 Friday morning I check in at Florida Hospital, and not too long after that I expect I'll be under the knife driven by Dr. Boyer. He's head of the thoracic cancer surgical team and a heart and thoracic surgeon. Dr. Grobler will be on hand soon after the surgery as my pulmonologist and said it's possible my intubated respirator could be out of me as early as several hours post surgery.
One can only hope.
Dr. Z has been kept up to date by Dr. Grobler and he's on board with the surgery. (Update: Dr. Z just called and he is, in fact, on board. He said everything has been done to ensure I'm ready and he thinks this is the best thing to do and waiting won't do anyone any good. Thanks, Doc. You know how I feel about you and this entire team. No matter what happens!)
Meantime, I'm using my feeding tube for the very first time as I type this. What am I infusing? Nothing less than a gallon of some wonderful medicine called GoLytely. I won't go into details, but you can imagine what the going is, and I fear it won't be too lightly.
So to all, I probably won't be able to blog tomorrow. A reminder to check out Catherine's blog at CancerVivorSpouse.blogspot.com. It'll be the place to check out my condition tomorrow evening. If you have her number, call. She'll try to take all the callers. But I presume you can have proxies call so she doesn't spend her night on the phone. If I'm awake and can talk, I'll try to use the phone, too. One never knows. I might even photo blog early in the day before the stuff hits the fan.
If I don't chat with you before the holidays, have a wonderful Christmas, be safe, don't drink and drive, see a doctor if you get severe heartburn and best wishes to you all.
I'll be back! Count on it!
Wednesday, December 19, 2007
But he and Brenda took my fiscal concerns to heart. Dr. Grobler rescheduled his day Thursday to accommodate my biopsy. He's told pathologists he'll need results of the biopsy stat. And he spoke to Brenda and to Dr. Boyer, who tentatively scheduled my surgery for Friday. So, two steps forward in one day. At least two steps if the biopsy's results are negative.
I saw Dr. Diamond (pictured at right from the Florida Hospital Web site) this morning, who, like Dr. Z, was reasonably confident the biopsy will show negative results. He, too, thinks the hilar node "lit up" in the PET scan due to chemo or radiation irritating the node. He thinks it's highly unlikely it would be cancerous, but we still need to take the precautions of a biopsy to ensure the docs' best guesses are correct.
And since I have the best cancer docs and cancer team on either side of the Mississippi, I am betting their best guesses are pretty much dead-on.
So, I head to the hospital Thursday morning for pre-surgery tests, followed by registration for the biopsy, then the biopsy, followed by a night preparing myself mentally for the operation and then -- if the biopsy is negative -- the surgery itself Friday morning.
Because I'll be in La-La Land for a couple of days, I've asked Catherine to update her blog regularly with my condition. Its address is at the top left of my blog, near my photo, and also right here: CancerVivorSpouse.blogspot.com. Check out her posts, including her earlier items. She's a good writer and has a take on this whole thing that is different than I've been taking. You'll enjoy it.
Now for the step back. It has nothing to do with my condition. As many of you know, my Mom has been doing well in her recovery from a triple bypass in July. Sadly, early Wednesday she was rushed to Orlando Regional Medical Center with respiratory problems. She's doing much better and just hours after arriving in the ICU they tried to remove the breathing tube placed when she arrived in the ER. But it didn't work well, so they're going to do it more gradually in the coming day or two. She's awake and eager to have this setback put behind her. She knows about my surgery and I've told her she needs to get better so we can switch roles and she can help me get better in the coming weeks. She says she's up to the task, so we'll see.
Either I, or Catherine, will keep you posted. I'll update Thursday night when I get home from my biopsy, then I'll pass the torch to my bride.
Was up early, as usual. About 9ish I had a "light breakfast" as instructed by Dr. Grobler's office staff -- a bagel with cream cheese and some fruit cocktail, plus a cup of tea. Visited Dr. Z for my 11 a.m. appointment, which went very well. He said the lymph node was not one typically affected by this type of cancer, so it's very likely lighting up in the PET scan because of damage caused by radiation. My blood work looked so good that Dr. Z said I no longer must get tested weekly. Gotta like it.
Then Catherine and I went to Florida Hospital's cafeteria and she had lunch. I didn't because it was coming close to my procedure. A little before 1 we went to check in at the outpatient center. That went extra smooth, and quickly.
I know, right now you're asking, what the hell was frustrating about anything mentioned above. The answer is nothing. Nothing yet.
After we checked in, we headed to the endoscopy area across the little walkway bridge in the main hospital. We were there about 20 minutes early, and the nurses said that the timing was perfect. I weighed in. Signed in.
"Eat anything after midnight?"
"Yes, a 'light breakfast' -- bagel, cream cheese, fruit cup, tea."
"What? When was this?"
"About 9, 9:30."
"I don't know if the doctor's going to like this."
"The doctor's office told me to have a 'light breakfast.' "
You get the picture.
Point is, the doctor, the anaesthesiologist and most others involved in the procedure didn't like it. And I didn't feel like having a bronchoscopy without anaesthesia, so we didn't do the procedure.
Now it'll be Thursday or Friday, I guess.
Ah, good times.
Monday, December 17, 2007
At 11 a.m. is an appointment with Dr. Z (pictured from the Florida Hospital Web site). I presume he'll give me greater detail on all the data coming in the past week, and what-if kind of options. After that I'm off to Dr. Grobler at Florida Hospital for the biopsy of my hilar lymph node at 2 p.m.
That should get me home in the evening, and I'm not sure how up to blogging I'll be. But I'll try to keep you posted.
Dr. Mayoral would do a biopsy endoscopically via the esophagus, which he would pierce to grab a smidge of the hilar lymph node. But it appears now that pulmonologist Dr. Nicolaas M. Grobler will do a similar procedure via the bronchial tubes. And he'll do it Tuesday at 2 p.m. More fun, woo hoo.
The procedure is called an endobronchial ultrasound, or simply a bronchoscopy for us dummies. Basically, the doctor, who apparently is fleeing the Sunshine State for the Golden Gate State at the end of the month (more work out west with all the fires and smoke in the air), puts this tube with an ultrasound attachment down my throat and into a bronchial tube, where he locates the hilar node and pokes a hole from the bronchial tube to the node and grabs a piece so another doctor can determine whether it is cancerous.
If it's not, I presume Dr. Boyer can proceed with surgery one of these days. If it is, I guess it'll have to be removed.
So that's the latest, which included an update even as this was being typed.
But not before a call Friday afternoon from Dr. Z with good news. The biopsy results were negative -- I don't have cancer in my liver. That was the best news I've heard in, oh, two or three months.
That was during the drive south. It was a better drive than if I didn't receive the news until this morning.
But there was one caveat. A lymph node near my left lung also "lit up" during the PET scan. Dr. Z said that with the liver scare behind, we should work on this before surgery. So today I meet Dr. William Mayoral (at left from the Center for Digestive Heath's Web site) at 3 p.m. to discuss possibly obliterating the node with ultrasound, Dr. Mayoral's specialty.
So after a day and a half of moving Mom's things,
we took Sunday of and went to my favorite Central Florida theme park, Busch Gardens. Didn't ride any of the big coasters, but we did go on Rhino Rally and Cheetah Chase.
Today, Monday, is back to normal. I see the doc and then perhaps we can get going on the surgery before the new year. Would be nice to be home for New Year. We'll see.
Thursday, December 13, 2007
Her name is Brenda, and since late September she's been the "other" woman in my life. And Catherine is cool with that.
Brenda (photo at right from the Florida Hospital Cancer Institute's Web site) is a nurse who coordinates the treatments for all thoractic cancer patients in the Florida Hospital system. She's been the person who deals with my doctors, then the new doctors, the labs, and even the schedulers who, for example, organized my various tests this week.
This morning, for example, Brenda called to tell me that we would not, under any circumstance, be able to schedule a biopsy of my liver for today. It would have to be Friday at the earliest, and she'd get back to me after 1.
This was good. It meant I could have breakfast with Catherine. A bagel, cream cheese and some juice. Of course, as Murphy would write in a law at some time or another, as soon as I swallowed the last bite of bagel, the final gulp of OJ, the phone rang. Brenda calling. "Did you eat yet?" she asked. I told her I had just finished, but it was only a bagel and juice. She said she might be able to get me in for the biopsy today. But the doctor's office asked if I ate. She'll call me back.
It turned out that it was OK. So we drove to Florida Hospital. A few blood tests later and I was on a gurney awaiting my turn for the biopsy. Woo hoo.
It was as I waited for the procedure that I met the voice. Brenda knew I was in house and decided to walk over to the radiology outpatient area and introduced herself. The voice and the face now go together. I'm so glad she stopped by. Wish I had a photo of Brenda, and if I find one I will add it here. She's a good person and helped ease my concern about the biopsy procedure.
Speaking of which, the procedure wasn't awful but would not exactly call it pleasurable or even comfortable. The doctors were grabbing with a needle guided by another CT scan some tissue from my liver where those "spots" showed up on my PET and CT scans. Thankfully, Dr. Z said the CT scan revealed they didn't have the standard shape of a cancer growth, though that doesn't mean they're not cancer. They might just be remnants of my radiation treatments or they could be cysts on the liver.
I should find out either Friday or Monday just what they "spots" are, and I'm hoping they're not cancer. I'll let ya know.
Wednesday, December 12, 2007
While I was being poked by the nurse and getting an IV line placed, Dr. Z called to touch bases. He said he'll let me know as soon as he gets the results, which I am sure he will. He's pretty good on the communication side of things. And we'll have to meet by Friday to map out a strategy, or in the words of our humble president, a strategery.
After that we'll just have to see. I'm hoping the spots on the liver are just shadows of the feeding tube or fatty deposits or cysts. Of course, it's possible they're a bit more serious than that.
At which point I'll have to seriously ask the doc whether I should place my head betwixt my legs and kiss my much thinner arse goodbye.
On one hand, my esophagus appears to be clean. On the other hand, there are "spots" on my liver.
Which has the doctors stumped. They don't see how it was clean before and now has spots, especially with the esophagus clean. One possibility is the radiation caused some burns there. Another is more cancer.
So, I'm in for at least two more CT scans and likely a biopsy of my liver.
These might get scheduled for today; I'll update as I can.
It's disappointing but at least the cancer is out of the esophagus, so if the liver is cancer free things are pretty good.
But hopefully I will hear soon, and when I do I'll update with the results.
Believe me, I'm on edge as I await results of the PET scan.
Monday, December 10, 2007
I started the day at the PET scan lab about 9:15 in the morning, drank some radioactive isotopes and had others injected into my bloodstream. I did get to nap for about 90 minutes before I had another drink of a yummy chemical and then went to the PET scanner, the big thing made by GE to the right.
There, some talented techs, like the one at left operating the PET scanner, guided me through the four-foot tunnel and kept me calm, cool and collected.
Afterwards, however, they wouldn't tell me a thing about what they saw. Not a hint. Not a clue. (Of course not, that is the doc's job!!!) So while I spent more than two hours there, I have no better idea now than I did before going for the scan as to whether I still have cancer and whether it has spread. Damn!
But not to worry. The day got better. I had a blood draw about two hours after leaving the PET scan. It was mixed, but mostly good. Once again, the red blood count and the hemoglobin were low, but not critically so.
Later, Catherine and I visited Mom at her rehab center, and she had good news as well: her tracheotomy was closed today. If two months ago someone would have said that the trach would have been gone before the new year I'd have argued against them, and I am a relatively optimistic kind of guy.
When we returned, there was another pleasant surprise: A beautiful arrangement of Christmas cactus was at the doorstep, courtesy of Sentinel Editor Charlotte Hall. (Thank you, Charlotte, they're really beautiful and I'll add a picture in the morning light.)
Finally, Catherine and I were invited to the Jethro Tull concert by our best friends in the world, who drove in from Lakeland for the event. The concert was amazing and really made the day one of my best since this whole cancer ordeal began. We were in row B, which isn't the second, as one might imagine, but is pretty far down toward the front. The seats were great. The music was great. The company was great. (Thank you, Mary Ann and Ted!!!)
I kept on thinking -- but then put the thought out of my mind...
I will be to more concerts in my life. Today just confirmed the obvious to me.
Saturday, December 8, 2007
Like I keep saying: Yes, heartburn can cause cancer.
So please take care of yourself and consult a medical professional if your symptoms match mine: an inability to swallow foods and recurring nausea without much reason.
Seriously, early treatment -- that is prior to the symptoms noted above -- can help prevent cancer of the esophagus. I just wish someone had told me this stuff 10 years ago.
Friday, December 7, 2007
I'm glad I was totally out of it by the time things started. But when it was over, daughter Karen told me Dr. Styne left images of my insides (At the bottom of this post, if you dare!) and told her it appeared the tumor was smaller. Not sure I can tell from the images if it's smaller or even what it is. But the images are there in all their living color.
But it was good to know that Dr. Styne is a reader of this blog, so maybe he'll let me know what's where, which is up or down and what to look for and then I'll inform the rest of you. Dr. Styne even joked with the two nurses and myself in the procedure room, warning that they should be careful what they say because it'll be online by tonight. How right he was ... even sooner. But I did point out that I've never, ever said anything bad about any of my docs -- that's because I can't think of a bad thing to say. They're all top-notch and I recommend each and every one of them if (God forbid) you need their services.
So check out the images and let's find out what they mean.
Oh, and apologies to my buddy John Cutter, but after the procedure my wife and daughters and I had brunch at TooJays off Colonial.
Wednesday, December 5, 2007
I had a call from Florida Hospital today to pre-register for the PET scan at the Advanced Nuclear Medicine building across Orange Avenue from the main campus. By pre- Prof. Fate, r, in "The Great Race," c. Warner Bros.
register, of course, they mean pay your co-payment. Which I did. I'm pretty close to the max I'll have to dish out for the co-pay, $1,250, so the surgery and resulting hospital stay won't require a payment. Whew.
But the reality is that once these two tests are concluded the doctors will determine my fate. Or maybe my body will determine my fate but the docs will evaluate and assess said fate. Maybe I should call the docs Professor Fate (some of you might get that). But that would be a slur to my docs, who I really admire, so I'll hold off.
Tuesday, December 4, 2007
What it all means, I guess, is that I'm normal. One wouldn't expect someone who just went through chemo and radiation to be perfect. That's why the docs wanted me to have a "cooling off" period, where, as Dr. Z put it once, the smoke can clear.
Friday is one of the big days for me -- my endoscopy. Then Monday is the PET scan and by that Wednesday, Dec. 12, I should have a good idea as to whether the chemo-rads one-two knocked out the cancer and when (and if) they surgery will be.
So that's my status in a nutshell. I'm personally going nuts sitting at home, though I do find myself sleeping a lot, which can't be a bad thing at the moment. It's bizarre for a person who regularly works the night shift to go to bed by 9 p.m., but that's been me for a couple months, especially since the stomach tube ends up waking me up by 4 a.m.
I can't wait to put this behind me and get back to work. I keep saying that and how odd it must sound. But it's true. Being idle certainly is no fun.
Hopefully, it won't be much longer.
Monday, December 3, 2007
I go to the doc's today for a blood draw and I hope the numbers start to improve, since surgery could be as soon as 10 days from today -- yipes!
I added this photo of the bride for the fun ot it. I snapped it just moments before I escorted her down the aisle. I'll post shots of us as soon as I have some available. Pardon the background, but it's a golf club, after all.
Sunday, December 2, 2007
The happy couple are pictured above (with Jen's sister Kim as the officiant and niece Remi to left and nephew Elliot at right) and at the bottom during the rehearsal at Stoneybrook Golf Club on Saturday.
So of course I have a glitch that I'm trying to resolve internally at the moment. Hat? No hat?
Saturday, December 1, 2007
Catherine drove me down to retrieve Mom from her rehab center in Boca Raton and Friday we made the trip back to Central Florida and Mom's new short-term home at Conway Lakes Rehab Center in Orlando. We were accompanied by Aunt Anne, Mom's sister, and Sylvia Clark, Mom's best friend for more than 50 years, who also will attend the wedding.
Mom already has had a couple of physical therapy workouts, though so far she's not thrilled with the menu at Conway Lakes. She is thrilled that on Sunday we're checking her out for the afternoon so she can be a part of Jennifer's wedding. (Mom, pictured above at Conway Lakes, checks out the wonderful scrapbook made by my friends at work. She and my family were mighty impressed.) She won't be up to walking Jen down the aisle, but she'll be there -- something we were not sure would happen a couple months ago.
So to Beatrice Spitz, we at the Kohn household just want to say Welcome to Central Florida!