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!
Tuesday, November 27, 2007
So a week after the chemo was removed its still having an effect on my body. I guess that's good. I have no problem with the chemicals, the radiation, whatever, kicking some cancer butt.
My endoscopy and PET scan both have been moved up a few days, the scope to Friday, Dec. 7, and the PET to the following Monday, Dec. 10. This so Dr. Boyer, Dr. Z, Dr. Diamond and their cast of thousands can review the results on Dec. 12. Surgery should follow within days, methinks, though no firm date has yet been established. Personally, the sooner the better as far as I'm concerned. I can't wait to get it over with.
In unrelated news, my Mom will be up in Orlando on Dec. 1, just in time for Jenny's wedding on the 2nd. Jen is quite psyched up and ready to rock, as is her finace, Chris. Mom is thrilled she'll be able to attend, though she won't be able to participate (earlier I dangled the carrot that I'd gladly stand aside and let her escort Jen down the aisle is she were to be better in time). She's fine sitting in a wheelchair and enjoying the nuptials. I, too, am happy to be able to attend the wedding, though my bald head might glare out the photo equipment.
In all, it will be a busy few weeks ahead, but rewarding in many ways.
Friday, November 23, 2007
I'm still sleeping through most of the day, but when I wake up I'm also feeling a smidgen more energy.
Still, the anxiety about the surgery reminds me daily I'm not in the clear. And I'm still awake daily about 3-4 a.m. due to the stomach tube in me. Seems my body still tries to digest it, and the clamp I have keeping it from being sucked through my digestive system hurts as it's pulled tightly to my outer abdomen.
It's a bit bizarre that I'm feeling more nauseous now than, say, four weeks ago. After all, the chemo is gone. I can't figure that one out.
But another way to look at it is by this time in February, this will all be in the past. I will have gone through and survived the surgery after having a PET scan that affirms the cancer has not spread and an endoscopy that finds a smaller tumor. The pain of the surgery will be gone and I'll be settled back in at my desk in the Sentinel newsroom. That is my preferred way to look at things. In the future. A future that includes me.
Thursday, November 22, 2007
Besides my wonderful family and friends, there is a lot for which I am thankful.
I have my health (I'll address this in a sec.) after all.
But mostly I have my wife and kids and family and friends. Catherine is and has been amazing through nearly 28 years of dealing with me. My daughters, including one due to wed in less than two weeks, are amazing and a constant source of joy -- and negative cash flow. Their boyfriends (in other words, their ability to make wise choices) are great and always welcome at home. One of our two elder kids from Catherine's mistaken marriage, has been nothing but a joy; the other, well that's another story for another time.
My Mom has been a blessing throughout my life and her returning health is another source of thanks in this year.
Now, back to my health. One could look at the past few months and ask if I'm crazy for being thankful that my health is as it is. After all, I have a life-threatening disease that has made me ill for the past seven weeks, preceded by a minor surgery and which will be followed by a hazardous surgery. Then there's no guarantee that my health will be restored.
But the way I see it, I'm thankful that going into this ordeal I was restoring my health. I was losing weight intentionally (I'm down two pant sizes, though I'd much rather it was via a more natural weight-loss plan), my blood pressure had been down, I don't really have any other major medical issues. So my health as it is will help carry me through my cancer and help me survive the cancer.
How can I be more thankful, then, for my health as it is? My health will help keep me alive. In a very real sense. Others like to be "healthy" but my health will help save me.
So on this day of thanks for all that we have, look at yourself, at your family and friends, even to those you don't like so much, and be thankful for all of them, for everything. One doesn't often get the chance to be so introspective, but that's a mistake. Everything we are, everyone we are with is a source of thanks.
So enjoy dinner with friends, family, colleagues and thank them all for being a part of your life.
You'll thank yourself someday.
Wednesday, November 21, 2007
I'm impressed with the concern everyone has shown for my condition and the wonderful comments many of you have left for me. I appreciate every one.
I created the blog to as a warning and reminder that heartburn can lead to cancer. Hard as it seems to believe, it's a fact. I am living proof of this.
So much so, that my warning has led at least three readers of this blog, including a relative, to see a doctor for endoscopy or consultation. I'm glad, since that was the goal. I hope more of you -- especially those suffering with heartburn -- get checked out for this disease or some of its precursors.
And if you ever, ever, ever have a difficult time swallowing food or drink, run -- don't walk -- to the doctor, as this could mean you are in an advanced stage of esophageal cancer, as was I when I saw the doctor in September. Run. Don't walk!
Meantime, keep reading and I'll keep writing as I travel the journey to being a cancer survivor.
Tuesday, November 20, 2007
Monday, November 19, 2007
"I'm free, I'm free,
"And freedom tastes of reality ..."
I say I'm free because my tethered chemo pump is no more.
It feels good to be about a pound or two lighter and no longer have that tube plugged into my chest.
While at the doc's office, they pulled more blood and my numbers are improving; my white count actually was in the normal range, though others were in the low zone. But by next week I'm anticipating good things. I hope I can put on weight (I'm down to 193) and get healthy going into the surgery in about three weeks, give or take a few days.
That's the goal of this "cooling off" period -- getting healthy after six weeks of self-inflicted poisons being added to my body.
Didn't get to see Dr. Z today, but I guess that's a good thing in that it means he didn't need to see me about anything bad. I must say I enjoyed our weekly visits; he's really a good guy and a very caring doctor. I miss our barbs about the benefits of either the Intel-based PCs or the now-Intel-based Macs.
But I'm glad the lack of a conversation means I'm healing.
Sunday, November 18, 2007
It's not horrible, but it's there and it is a pain in the neck at nights, when showering, when dressing and the like.
And starting Monday, the pump (pictured above with the tether that is attached to my body as it infuses 5-FU into my jugular vein) won't be any of those things. It will be gone. Amen.
My infection seems to be mostly gone and my cough is pretty much a thing of the past.
Further, for the past week and a half or so, my Mom has been out of the hospital and improving daily at a rehab center in Boca Raton. On Nov. 30, she'll transfer to a similar center here in Orlando. She's very excited about all the changes that have come about. And I did tell her about my condition once she was at the rehab center. I figure she was well enough to know the truth and she took the news quite well.
Catherine also has been doing well on her recovery from the chest cold from hell. It really sapped her as badly as it hit me, worse maybe because I ended up with two separate antibiotics to help me recover while she had just the Z-Pack.
Catherine has been amazing through all of this. She's put up with my crap, which isn't easy on good days, let alone a few months of bad ones, and she's remained focused through it all. I'm lucky to have her.
I think the time frame for my return to work might be a bit off. I was hoping to be back in early January, but now I fear it won't be until late January or early February. If the surgery is mid-December, like Dec. 12-17, add six weeks and that's about when I'll be back. Ugh. So figure early to mid February.
Unless my recovery from the surgery goes way faster than planned, which I truly am hoping for. After all, that would mean less pain for me. And as I told the nurses during all of this the only thing I'm allergic to is pain, so keep it to a minimum. That's my plan during and after the surgery.
I think the term I recall is "Better living through chemistry."
Saturday, November 17, 2007
Dr. Joseph Boyer (photo at right from Florida Hospital's Web site) not only is a nice guy who seems extremely qualified to cut out my tumor, but he also is very open and explained exactly what will happen when and after I go under the knife.
I was surprised to learn how complex the procedure is, and as a cardiovascular surgeon as well as head of the thoractic surgical team for cancer patients, he explained that the procedure actually is more difficult -- and dangerous -- than open-heart surgery. Heart surgery generally has a mortality rate of 1 percent to 2 percent, give or take. This operation overall has mortality into the 20 percent range, though his rate is "in the single digits." It involves two incisions, one to the upper abdomen and one to the right side.
Dr. Boyer said he did a similar surgery on a woman about my age just the other day, and she's doing fine. He did, however, explain how he lost a patient a little over a year ago, but he was 78 and had other medical issues. I think I'll make it through the operation pretty well, given my age and overall health.
My woes, I fear, will begin after the surgery. I'll have a tube down my nose and into my stomach to allow stomach gasses to escape without disrupting the surgical zone. The first day I'll be intubated. I'll have a button to press to provide me with those really good pain relievers every six minutes.
Day two, the tube comes out of my throat, so I'll breathe on my own. But eating will be through a j-tube, which will replace the g-tube now in my stomach. After that, the recovery will take up to two weeks in the hospital followed by several weeks of recovery before I can return to work. Dr. Z's office now estimates I'll be back in the saddle at work late January to early February.
The surgery itself involves cutting my esophagus to about a third of its size and bringing the stomach up to join with the newly reduced organ. My stomach, by the way, will be modified by being shaped more like a tube than a stomach. Dr. Boyer said that in time I'll be able to stretch it out to be very similar to its original form. Sort of like the results of a gastric bypass, I will have to eat smaller meals more often at first. Eventually, that might not be the case.
On the lighter side, I noticed Dr. Boyer is an iPhone user, and when we mentioned to him that Dr. Z likewise used the high-tech gadget, he had a message for my favorite oncologist. "Tell Dr. Z he's a copycat. I had it first."
Not sure if Dr. Boyer knows of my running gag with Dr. Z over his iPhone, so it was fun to get ammunition from one of the good doctor's colleagues. Heh, heh, heh.
Thursday, November 15, 2007
Also yesterday, my appointment with Dr. Boyer, the surgeon, never happened: partly his fault, partly mine. Being a surgeon, he was in an emergency heart surgery yesterday and when he got out met his backlog of patients in the office. But after about two hours of waiting, we left about 7ish. I was just fried and feeling ill and couldn't wait any longer. I hear he was ready just a few minutes later. Ah well.
But I did learn today he heads the Cancer Institute's gastrointestinal surgery team, which eased my concerns. So I look forward to our first meeting, whenever that will be.
Now I'm just hoping that I get rid of the bronchitis and the other infection so I can focus on the cancer, which itself is sapping my energy every day.
Tuesday, November 13, 2007
I am attaching to this post several images which basically are charts of my blood counts -- white blood, red blood, neutraphils, hemoglobin and platelets -- these past several weeks. I hope they make sense, but those who asked to see my numbers will understand.
Monday, November 12, 2007
On the downside, my numbers -- specifically my white blood count -- is below what Dr. Z wanted to see when I first met him. But I told him I'm feeling better considering the two infections I'm coming off and he agreed to keep the chemo pump on my for the final week. Whew. I really do want to kick this cancer's ass, and if that means wiping me out for another week, I'm up to the challenge. The doctor's a good man, and he knows I think the world of him.
Also today I learned that I'll have a PET scan Dec. 12 and that I will schedule an endoscopy with Dr. Styne for a day or two after that, so when I see Dr. Z Dec. 18 he'll have all the info he needs to stage and diagnose where I'm at.
My surgeon will be Dr. Boyer, and I'll meet him for the first time this Wednesday. He apparently is up to speed on my situation because I've been discussed at the Wednesday cancer committee meetings of which Dr. Boyer takes part. So it's good to be in the hands of someone familiar with my case specifically even before we meet.
I imagine my surgery will be sometime after that Dec. 18 meeting with Dr. Z and before the end of the year. I'd like to keep the surgery in 2007 so I don't have to start the 10 percent co-pay all over in 2008.
There finally seems to be light at the end of this dismal tunnel.
But most of those two obstacles are gone and I'm back with a vengeance now. My blood numbers are holding their own (I'll find out for sure this afternoon at Dr. Z's) and my weight actually went up from last week.
On a good note, just two more radiation treatments and I'm through with that phase of my treatment. A few weeks to go for chemo. I've been scheduled for a PET scan on Dec. 12 and today I've been asked to find out from Dr. Z who my surgeon will be.
This all means things are moving forward, thankfully. And now that I'm gaining weight again after a couple of weeks of reducing, I guess I'm back on the path I was before the bronchitis struck.
Meanwhile, I feel as if I helped Dr. Z out medically last week when I stopped by on Friday to discuss my condition and noted that there was a report on CNN and elsewhere that iPods and iPhones could be hazardous to your health. Seems the ear buds and some internal components could kill you -- or at least poison you -- if you ingest them. So don't chew on the wires to your ear buds or nibble on internal parts. Apple, meantime, was fined harshly for these issues.
I'll update after my doctor's appointment this afternoon with Dr. Z.
Monday, November 5, 2007
The chemo pump is back tethered to my body but that's OK. I'm feeling good for the moment and a weekend of freedom helped get me to this place.
On an up tick, though, I have only seven radiation treatments left. Then it'll be up to the chemo to continue the fight.
So the coaster ride continues, with its solid ups and its harsh downs. I hope they don't get as bad as last weekend. Dr. Z said today he was close to hospitalizing me (has asked that I not use a direct quote) but relied on my opinion -- or maybe my fear -- to let him know whether I needed to be there or home. Another day he might have made a different decision; I'm glad he didn't this time.
(Speaking of Dr. Z, I just saw a new TV commercial for the iPhone. It's the one where a New York dancer blogs with her cell phone and posts photos as the dancers perform. Hello, I was doing that months before the iPhone was released with my trusty Motorola. But I still find the iPhone very cool for other reasons, most of them visual. So I'm glad Apple and AT&T have caught up to Motorola and T-Mobile. Now we're all on par.)
Sunday, November 4, 2007
Uncle Buddy was a good guy, father to four of my cousins, Trudy, Kirk, Jill and Mindy, and grandfather to their children. As a kid, I remember Uncle Buddy always enjoying himself and his family and pastimes. He loved golf, loved the Yankees and loved his wife, my Aunt Irene "Ida," who preceded him in death, also in Arizona.
I remember him shooting wiffle ball golf balls from the backyard of the house on Avenue N in Brooklyn and rooting with Kirk for the Yanks. That was a pastime I never got into, since I was a Mets fan. I understood his passion, no matter how misplaced it was.
Later in life, after retirement to Arizona, Uncle Buddy became an avid volunteer with local schools and youth groups. He was honored as volunteer of the year a few years ago. That's the kind of guy he was. Always looking forward, always happy.
Here's what he told The Arizona Republic last year: "Teachers tell me that the students have improved a lot in reading and the parents thank me. That makes me feel good."
I'll miss Uncle Buddy and I'm sad I won't be able to attend his funeral Tuesday. I'm sure that after the past couple weeks of medical issues, he is at rest and once again is reunited with Aunt Ida.
Saturday, November 3, 2007
Thursday night my temperature spiked to 102.4, which is 2 degrees above the threshold that should have sent me to the hospital. But cautious doctors kept me on antibiotics and I gladly avoided checking into the cancer institute. Last night, too, my temp rose but not above 100.8, and Dr. Z said if it went over that I should call. Whew.
Earlier Friday, I saw the doc to follow up with my Thursday night fever. He had some blood drawn, and the numbers were better than we expected. White blood count were up, platelets were down. I'm sticking to the antibiotics and monitoring my temperatures.
But the best event Friday was Dr. Z's decision to pull me off the chemo pump for the weekend to give my body a break.
Thus my shower this morning. What a relief. (Truth up front, I did get dizzy and somewhat collapsed in the shower for a few minutes, though I managed to sit down before falling down.) Still, the shower felt good and I am feeling much better now.
Another bit of good news today was when, for the first time in months, I was able to speak to my mom. Well, actually that's not true. I've spoken to her often, but this was a two-way conversation. She spoke back. That is the first-in-months event, and it felt good. She sounded great. Truly. It was her voice, though slightly higher pitch, but definitely her. It made my day. Made my week and month, too.
So I am happy to take the bad with good news like that.
Sounds like a fair trade to me.
Thursday, November 1, 2007
Good news is Dr. Z prescribed, what else, a "Z Pack" to fight the bronchitis. It seems to be working. Though my voice is pretty shot.
I had a call from a nurse consultant and it was rough answering all her questions, but somehow I managed. She's trying to help, but somehow at this moment it really wasn't. But I cooperated because that's the kinda guy I am.
I fear that this week I will not record a weight gain. I've been eating a tad less due to the nausea, though maybe I can turn that around over the weekend.
Monday, October 29, 2007
I'm pooped but still standing. Three or four additional chemicals are flowing through my veins and arteries. They will help me live and I'm glad they're doing their thing in there. (All three; not bad, eh?)
And as for Dr. Z. He liked my post about his iPhone, though he thought I took some cheap shots at Mac computers. Daughter Kim, a Windows supporter, even called them a bit "snarky."
Really, though. Macs are beautiful machines. They look cool, they have a neat interface and in spite of gobbling up tons of memory needlessly they really do zip along. So, Doc, here's to you and your Macs. May they catch up to Windows machines in my lifetime, and may it be a very long lifetime thanks to you. Amen.
It is about 3 p.m. and Kim and I have been at one doctor's office or another since about 8:30 a.m.
I've had my radiation, a visit with Dr. Diamond's physician assistant, gave blood to the vampires at Dr. Z's office, got the results (wow, they're good!) and now am being infused with a couple of cocktails of chemo before I'm reconnected to my chemo pump. I think there's one more chemo punch to go before the pump is hooked back in. I'm even blogging as this is going on (and Kim shot a picture of me typing this very blog item, which is above).
I'm not feeling sick at all, but that might be because the first medication they dripped into me was the anti-nausea medicine. I'm grateful for that. Actually had a decent lunch of chicken noodle soup and a grilled cheese sandwich, plus some sweet potato fries that Kim and I shared. Mmm mmm good.
As I noted earlier, my white blood count was really good. It went from 4 last week to more than 6 today. I'm no doc but I think maybe it was because I was feeling ill earlier, the result of Catherine's bronchitis or pneumonia or whatever it was. In either event several key numbers were up and others were down. But overall, Dr. Z said he's pleased -- and somewhat surprised -- that my numbers are holding up so well. I just hope this bodes well for my efforts to eradicate the cancer in my body. I know it will!
Sunday, October 28, 2007
He went through a treatment program similar, though not identical, to the one I'm undergoing. He had seven weeks of radiation and two major chemo treatments, but he was hooked to the chemo pump three days a week, not 24/7 as I am enjoying. Initially, his docs put his chances at survival at about 15 percent. So he's surely beaten the odds already.
Steve is upbeat and was throughout his treatment. He told me a bit about his regimen. His chemo caused severe mouth sores; thankfully that has not happened to me. Tips from friends and doctors might have helped in that regard. His feeding tube fell out once after about 90 days and he had two hours to have it replaced before another surgery would be needed. Whew!
Since his surgery, at about the same location as my tumor, one of the most severe issues he's confronted is acid reflux-type problems. He's solved that with a recliner in the bedroom.
He said the surgery is weird but works, and, as he pointed out often, he's alive. So it's worth the sacrifice. His surgery was done down the throat, which he said was awkward. Other surgeries are done through incisions from the side. Not sure what the docs have in store for me. I'll ask tomorrow.
Steven said he thinks he survived for two reasons: His attitude and so he can help others, as he has done with me.
If anyone would like to contact Steven, his email is firstname.lastname@example.org, and he's happy to hear from anyone who writes. Steven is a techno-compu-kinda guy. He also rides a motorcycle and lives up near Detroit. But most of all, he is a CancerVivor; I'm still a future CancerVivor.
But like I told him, I will survive. Count on it.
So I start my day early tomorrow, first going for radiation about 45 minutes early, then rushing from the Winter Park office to Orlando for the chemo.
Can hardly wait. Thankfully, daughter Kim will hang out with me, and we'll have this laptop as well as a few books and games to eat away at the time (thanks Karen Saunders for the Scrabble game and the puzzles book; they'll come in handy once again!!!).
Days like this, Nutren 1.5 with Fiber and artificial vanilla flavoring doesn't sound half bad.
Saturday, October 27, 2007
Not that that's a bad thing.
The past day or so I've been doing a lot of sleeping and helping Catherine get better. It seems to be working. She can actually speak now, which she couldn't for a couple of days. (I know, a great opportunity for jokes about keeping the wife quiet and all, but I'll pass.)
Today she and I were well enough to shop at the mall for a dress for Catherine to wear to daughter Jennifer's wedding in December. She found a nice dress and it will be great for her to wear to the wedding.
Meanwhile, daughter Aimee and boyfriend Luis visited Mom today in South Florida. They said she's looking good and was pretty wide-eyed and aware of all that's been going on around her. Which is good news. If she can stay off the vent when they remove it -- possibly Monday -- then she likely will be able to go to rehab and escape in time for the wedding. But I don't want to count my chickens, so to speak. We'll take that road one day at a time. (Was that paragraph cliche city or what?)
On Monday, I go to Dr. Z's office for a full day of chemo treatments; I can hardly wait.
But that will be the second and final such full-day infusions. Whew! Then, another 3 1/2 weeks of chemo and rads and I get to rest from this stuff. Believe me, I sure won't miss being attached to this chemo pump.
I will blog from the all-day chemo marathon, and will likely add something -- even if it's ala Seinfeld, something about nothing.
Thursday, October 25, 2007
She caught me up on her European vacation and cruise and even had some tidbits of gossip to pass along, though most of those already have appeared on the Newsroom Briefing. She has good insider info; still a reporter digging for stories, I guess.
Earlier I had my radiation and second weekly X-ray to ensure all my organs are in about the same place so the targeting tattoos are still accurate.
Today also was a day of turn-arounds. I became Catherine's caregiver for a few hours today; she's sick with a nasty bug that likely is bronchitis but could be pneumonia. I think we're both hoping it's the former. She's in her second day of antibiotics so I think she's no longer contagious. Hope so, anyway. We've been keeping away from each other for a couple of days, and using Purell and Lysol spray when we are nearby. Thankfully, my immune system is still working, though the white blood count might be borderline by Monday if the trend in its decline continues.
I've been meaning to scan and post those blood counts but, frankly, been too tired to bother. So I haven't. I guess that's a decent excuse.
Wednesday, October 24, 2007
She asks me why...I'm just a hairy guy
I'm hairy noon and night; Hair that's a fright.
I'm hairy high and low,
Don't ask me why; don't know!
It's not for lack of bread
Like the Grateful Dead; darling
Gimme a head with hair, long beautiful hair
Shining, gleaming, steaming, flaxen, waxen
Give me down to there, hair!
Shoulder length, longer (hair!)
Here baby, there mama, Everywhere daddy daddy
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
Let it fly in the breeze and get caught in the trees
Give a home to the fleas in my hair
A home for fleas, a hive for bees
A nest for birds, there ain't no words
For the beauty, the splendor, the wonder of my
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
I want it long, straight, curly, fuzzy
Snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining
Gleaming, steaming, flaxen, waxen
Knotted, polka-dotted; Twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled and spaghettied!
O-oh, Say can you see my eyes if you can,
Then my hair's too short!
Down to here, down to there,
Down to there, down to where
It stops by itself!
doo doo doo doo doot-doot doo doo doot
They'll be ga-ga at the go-go
When they see me in my toga
My toga made of blond, brilliantined, Biblical hair
My hair like Jesus wore it
Hallelujah I adore it
Hallelujah Mary loved her son
Why don't my Mother love me?
Hair! (hair, hair, hair, hair, hair, hair)
Flow it, Show it;
Long as God can grow it,
The theory behind chemo is the chemicals target cells that reproduce a lot. This includes hair, some skin cells, blood -- and, of course, the highly reproductive cancer cells. That's why folks on chemo lose their hair, or, like me, shave their hair beforehand to retain some control. So the fact it's not really growing back means the chemo is working in my body the way it is supposed to work.
It's also why I get so tire so easily. Blood cells carry the oxygen and energy the body needs.
I am glad that I shave my head. It's making days like this a lot easier, I guess.
This coming Monday I get my second full day of chemo treatment. I believe it also is the final such treatment. I'll be there starting about 9:45 a.m. and it should last about four to five hours. I'll have the laptop there and will blog.
I think I still feel remarkably well considering what's going on. Much better than I expected at this point in my treatment.
I am still eating, so Nutren 1.5 with fiber and artificially flavored with something resembling vanilla will just have to wait. Darn.
Tuesday, October 23, 2007
So, I didn't. I slept.
Sleep really helped. I finally arose and had a late lunch: Some of the yummy brisket at matzo ball soup provided by the Shaws a couple of days ago. It was still wonderful.
Well, time for a nap.
Monday, October 22, 2007
Dr. Z shows off his totally cool, wired (er, well, wireless, actually) and blogalicious iPhone at today's exam. Oh, also, my numbers are holding their own.
The good doctor loves all things Mac. And while that's not my cup of antioxidant-laden tea, he's pretty steadfast that spending too much for a Mac is a good thing. Who can argue with logic like that? Not I. Don't have the energy for it.
So I posted this totally sincere, totally contrite entry to show Dr. Z that his phone really is cool. In a good way. Very totally cool.
As for my numbers, they're holding their own, somewhat. Some are falling, at a slightly more rapid rate than before, but most are still above what would be considered bad.
Dr. Z said this is because my bone marrow is doing a good job. Whew. I guess my bone marrow is blogalicious, too.
So, is blogalicious a real word? I don't know. Maybe the folks at Florida Hospital's PR department -- who apparently do read this space -- can let me know.
Sunday, October 21, 2007
I'm glad you're stopping by and I hope the blog is helping someone. Remember, its goal is to raise awareness in general about cancer and positive thinking in the face of adversity as well as the specifics of this cancer of the esophagus and the fact that heartburn can cause cancer.
Please get a check-up, an endoscopic exam or at least a consultation. If you feel you're a candidate for this, take care of it before it goes too far. Look at me, turn and run in the opposite direction. I didn't know I needed to have this examined 10 years ago. Now is your chance to avoid this horror in ... well, 2010, or beyond.
They also brought two books for me to read, both inspirational tales of beating the odds, medically and otherwise.
It was good seeing a colleague from work outside of work, just a bummer it was under these circumstances. Though Judy convinced me these circumstances aren't as bleak as I sometimes see them. She has a story of her own about overcoming adversity and what some would say are insurmountable obstacles. But those will be for another time.
And we're already wearing the Livestrong bracelets they shared.
Good people; good friends, for sure.
Thanks, you two!
ADDENDUM: Catherine, Kim and I sampled Judy's brisket and soup for an early dinner -- everything's early these days -- and Oh My God. Everything was perfect. So good, so wonderful I dare not mention them to my mom next time I see her because until now I'd never found a brisket quite as good as her's -- mine or Catherine's included. Seriously, thank you sooooo much. The visit truly made the day, and the brisket and soup really capped it off.
Dick, who has overcome several serious medical issues that began in the mid-90s after he was attacked at a New York ATM -- such as two strokes and major back surgery -- told me that if he could survive all the bumps he's driven over in the past decade so could I. Elaine emphasized, "We will beat this."
Dick was shocked to learn about my medical condition but confident I'll overcome this obstacle, as he so successfully has done with his uphill battles.
He had Elaine at his side every step of the way. I have Catherine, who truly is an amazing woman in her own right.
With encouragement from friends and support from this family I don't think I'll have too rough a time ahead.
Saturday, October 20, 2007
The Livestrong Survivorship Notebook has all kinds of resources and is available from the group's Web site at www.livestrong.org. I did have to use the www. I'm not being paid to send people to this site, but I think it's worthwhile. Further, the book is free but shipping costs about $10. So it's really not free, free. But it appears worth it.
The book was first presented at the new-patient orientation Catherine, Kim and I attended the other day. Oncology social worker Katie Noble pointed out its various elements and convinced me it was a worthy investment. She wasn't wrong.
Check it out online and see for yourself, or stop by and I'll show you mine.
I yearn to get back on the deck of our little sailboat and hit a lake or waterway. But I can't. The sun isn't good for me.
I'd love to hit the beach. Again, the sun.
A theme park; a roller coaster. The sun. These additions to my body. The nausea I'd expect. Not a pretty sight.
So I'm relegated to the inside of my house except for the occasional escapes to a mall or a movie or a restaurant.
But I know that soon these will be luxuries I won't be able to enjoy; I'll be too darned tired. A friend, from whom I've already shared tips on slogging through chemo or radiation, said it will hit in a big way. So I know what's in store, just not when.
But each day, it seems as if that when is much, much closer.
Friday, October 19, 2007
But here's a natural recipe he sent to help with the nausea. I mentioned it the other night in the group meeting for new cancer patients but didn't have it with me. So here goes:
Natural Ginger Ale
1 teaspoon fresh ginger rhizome, thinly sliced (or ½ teaspoon powdered ginger)
1 teaspoon red raspberry leaves
3 cups water
1 cup carbonated water
1 lemon slice
Bring the herbs and plain water to a boil, then turn the heat down and simmer for 5 minutes. Remove from heat, and steep an additional 10 minutes. Strain out herbs. Add carbonated water and lemon just before serving. Drink as much as desired.
Enjoy, and thanks Cuz.
Physically, I have a few new adornments to my body -- remember, I am Keith of Borg. I have this medi-port in my right shoulder-chest area. I have a stomach feeding tube for when that is necessary. And I have a small pump that injects small amounts of poisons into my blood each minute of each day to kill cancer cells.
Emotionally, I'm often fine but on occasion I become a wreck. I try to focus on the positive and look for such items to focus on. My wife, my kids, my friends, my colleagues, my career. There's a lot there, something for which I am thankful. But sometimes I just consider the enormity of the situation and just collapse into my chair. It's a tall order, like racing by foot up the Statue of Liberty, and I'm still just at the bottom of the base. I know I can do it. I think I can do it. I want to do it. I must do it.
But will I? That's one of the areas into which I ponder from time to time. I have a lot going for me. Even the doctors say this. But. But I have this tumor in my esophagus, and it's only going to disappear because these amazing men and women in white jackets with name tags and thermometers and the like are either injecting me, irradiating me or in the future using knives and extricating it from me.
Each day, I grow a bit more tired a bit earlier. I can't quite move as quickly as the day before. I type a few more errors into the blog and rely more on the spell-check program to catch them. But it's OK. Because in a few months, hopefully, I'll be back on my feet and back at work.
Thursday, October 18, 2007
She went to check out the sticker in the framed photo of the Diamonds and the Bushes. But, alas, it was not there. Rather, the good doctor had relegated it to a new task: Coffee cup coaster.
Wednesday, October 17, 2007
Katie Noble is the Cancer Institute's social worker in Winter Park and has handled much of the paperwork for me regarding my short-term disability. She also was the third speaker Wednesday evening in a four-hour new-patient orientation group at the Winter Park facility.
Earlier we heard from nurse Laurie about the specifics of cancer and one's body. And we heard from a dietitian about eating healthy meals and even how to make milkshakes or smoothies from the ever-famous Nutren 1.5. Mmmm.
For example, I finally learned why I need to avoid my favorite diet Lipton White or Green Tea. After all, they're emboldened with antioxidents and, in theory, healthy for you. For you, yes. For me, not as much right now.
Turns out the chemo and rads I'm receiving are oxidents. They kill the cancer cells by oxidizing them. So, when I drink or eat something with extra antioxidents, those good things protect the body's good cells as well as the bad, evil cancer cells. And we don't want anything protecting the bad cells. After all, that's the point of all this crap attached to my body, right?
So antioxidents in foods are good, but items that supplement them aren't as good right now. Gimme a few months, maybe.
So some good lessons were learned at the group discussion. And some good people were there, who all will remain anonymous here. But let me just say it was a pleasure meeting them all and I hope the class gave them the strength, knowledge and encouragement to fight hard for either themselves or their spouses.
Then we all get to meet one another over a meal of some sorts. Those of us who can eat, anyway. Thankfully I am not using the feeding tube just yet; boy would that be awkward.
I wonder if this violates any HIPAA rules regarding patient privacy? I doubt it.
I'll provided photos and a synopsis of what it's all about this evening. But stay tuned for the thrills that I'm sure we're all in for.
Tech Sarah in the radiation control room.
I met Sarah for the first time today during my radiation treatment. She said she'd been on vacation during my start. It was a friendly start to a relationship that'll last at least six weeks.
See, Dr. Diamond is the man who, when asked last week if he voted for the current president, replied ala any good voter in Flori-Duh of 2000, "Nine times."
So he accepted this little bumper sticker with a smile, a handshake and a pen for me to sign and date it. He then surprised the heck out of me. He took the bumper sticker and placed it in the frame in his office holding a photo of the good doctor and his bride shaking hands with the good president, Dubya, and his wife Laura. "It was at the White House Hanukkah Party" a few years ago, he told me.
So the man can take a joke and turn it into a gracious moment. Gotta admire that.
Tuesday, October 16, 2007
The stomach G-tube, as it is called, is much more comfortable now. And though it leaks, on occasion, there are ways to minimize problems. Some tips from the nurses who handle such things: Small elastic medical gloves contain any of the seepage. A plastic clamp. Even a custom necklace that can hook to the thing to keep it above the opening. Not bad.
Stitches also were removed from an incision used to place the "port" and that also went smoothly.
So now I am poised to fight the great fight; to do battle with a microscopic enemy I didn't even know had invaded my body until a month ago, or less. I know I will win this war. Losing is not an option.
My form, which hits the lower esophagus, is caused primarily by acid reflux, GERD and the like. But I haven't had heartburn since leaving a previous job in the Tampa Bay area more than eight years ago. Truly, heartburn pain ended when I joined the staff at the Orlando Sentinel. Coincidence? Until recently I thought not.
Now I know that's not the case. I thought it was a new job, less stress, creative workplace all added up to an end to my dependence on the high-tech pills of the day, Extra Strength Tums.
But it turns out the heartburn probably went away because my lower esophagus was one in transition. Barrett's esophagus is the result of long-term acid reflux and heartburn. Basically, the acids force the esophagus to fight back, and it does so by defending itself with changes to its cell structure. It takes on some characteristics of a stomach lining. And these changes can lead to cancer of that region.
So had I known I was still having heartburn I probably would have taken action years ago. Rather, I found out there was a problem this past summer during a trip out West. And I was diagnosed just a few weeks ago, after having an endoscopic exam.
(Another form of the disease affects mostly the upper esophagus, and it mainly is caused by the one-two self-inflicted punches of heavy smoking and heavy drinking. This form also can cause other problems further downstream in the gastro-intestinal tract, so if you do a lot of either my uneducated advice is to quit both, or at least cut back on both and cut out one. But enough preaching.)
I also would like to encourage you to seek medical advice if you have long-term heartburn, if you take a bunch of Tums or the like, if you recently lost the sensation of heartburn after a lengthy problem, or if you are having a difficult time swallowing foods that you normally could swallow.
Again, I'm no doc, but esophageal cancer is one of the fastest-growing forms of cancer. Here are some current numbers from the American Cancer Society:
- About 15,600 people will be told they have esophageal cancer this year.
- About 14,000 Americans will die of esophageal cancer this year. Because the cancer is usually found at an advanced stage, most people who have it will die of it. An advanced stage of the cancer means it has spread to places far from the esophagus. And that makes it harder to treat.
- Men are about three times more likely to get esophageal cancer than women.
- African-American people are more likely to get esophageal cancer than Caucasian people.
- Survival rates are improving. During the early 1960s, only 4% of white people and 1% of African-Americans with esophageal cancer lived 5 years after finding out they had it. Now, 16% of white patients, and 9% of African-American patients live 5 years after diagnosis.
OK, so some of those stats are grim. But there is good news. The team of doctors who are treating me, Dr. Z and Dr. Diamond, were part of a lengthy study run out of a Tennessee hospital with very promising results. So promising, in fact, that the treatment -- even before its publication in any major national doctors' mag, has become the default form of treatment. Survivability has increased to the upper 70 percents for one year out and mid-40s long-term.
I plan to be among the surviving 40 percent types. And I have a halfway decent chance. That's because I don't have any other major medical issues to deal with, which many of the overall study group patients did. I'm younger than most, at 47, OK almost 48. And my cancer has not spread.
I alluded to this in one of my early entries. I made fun of the fact I've lowered the bar for good news that now good news consists of having cancer, requiring seven weeks of chemo, seven weeks of radiation and then, very likely, surgery and six weeks or so to recover. Woo hoo. But both docs said that is good news. Because the cancer didn't reach the lymph nodes, didn't reach any other organ in my body. If that remains true after the chemo and rads, my chances go up that I will be a cancer survivor. I see no other option. It simply must remain true.
So, that's what I can tell you about my condition and a little about me. In future blog posts I'll do mini biographies of the doctors treating me and maybe some of the nurses if they're game. I have a brief copy of the unpublished study, which I'll type in, and I'll also scan in some of my blood work reports so you can see how they're holding up.
If I'm posting too much information, let me know. I'll ratchet back some. I promise if I mention nausea I won't get into too many details. That'd be tmi, in my humble opinion.
Well, I'm off to the radiation, so I'll update later.
But I do promise that I will fight this thing -- sadly, to the death if necessary.