Thursday, January 31, 2008
Guess I am a CancerVivor -- at least for now.
For this, I have thanks for my docs -- Z, Diamond, Boyer and the cast of thousands at Florida Hospital South and Winter Park Hospital -- my lovely wife Catherine, my family, my friends and colleagues and others who I haven't yet met but have corresponded with.
The fight isn't over, as Dr. Boyer put my chance of survival overall at 70 percent. Not bad, but not 100 percent. There's still a 3 in 1o chance things could go south in the coming two years. So, I'll be checked over every few months for the next couple of years. Then my doctors and I will share a celebratory drink one evening, when I will be able to officially thank them for saving my life. Until then, I have to thank them little by little each day and each time I see them. Thanks guys!!! Really!
I see Dr. Boyer next. My visit with him is Feb. 6 and hopefully he'll agree that I can return to work the following week.
But at hand right now is the minor surgery to remove the port. It's connected to my jugular vein, and the tube going from the port to the vein wends under the skin and over a bone to link up. My big dilemma is this: Local pain killer or the good stuff to knock me out? I'll decide in the morning, but I gave the nurse who phoned today a chuckle when we discussed this decision. Like I've said before, the only allergy I am aware of is pain. It's very bad for me.
Once the surgery is over, I'll probably be at the hospital a couple of hours before my release. I'll let ya know how it went Friday afternoon or evening, depending on my state of awareness.
Tuesday, January 29, 2008
I both look forward to this procedure and dread it. I dread it because ... well, geez, because all these things are getting old. But I look forward to it more. Once removed, my life will be one step closer to normalcy. I won't have this metal-and-silicone portal to my jugular vein bulging from my chest. I won't have to worry about a car accident that could really hurt me with the darned thing in place.
Another way normalcy is returning is my ability to eat. I'm eating a tad more each day, though a few days ago I overate -- by consuming one bite too much of chicken wings -- and became horribly ill as a result. It really is amazing how one bite can practically paralyze you. I'm sure this will change with time. Until then, I'm not even getting close to getting full. So a wing and a half will max me out for now.
Ah well, there goes my ribs or steak at Outback -- for now.
Friday, January 25, 2008
But in the meantime, Dr. Z has put in for me to have my medical port now buried in my right shoulder surgically removed on Feb. 1. It'll be an outpatient procedure and I hope it doesn't hurt too much; I've discovered my main allergy seems to be pain.
On some of the paperwork Dr. Z filled out today to extend my short-term disability through my return date, he wrote that my prognosis looks "excellent." Gotta like it.
I did, of course, remind Dr. Z to be safe on his helicopter ski vacation to British Columbia. No broken legs. No avalanches. I encouraged him to log into blogger.com and create a trip blog similar to the one Catherine and I posted during our trip to Yellowstone this past summer (momanddadonthego.blogspot.com) so he could post his thrilling moments using his fabulous iPhone. It was meant for something like that. But the good doctor said he's likely to be too busy to blog, but he will write during the trip. So I'll pass along some of his comments (as long as they're printable!) when I receive them.
Remember, this is one of the guys who saved my life. I'll see him next in April. Hmm, figures it'll be pretty much near tax time -- one of the few things in life we can't avoid.
Tuesday, January 22, 2008
Look out buffets. Look out O'Boys all-you-can-eat-ribs Tuesdays.
But the truth is I can pack away about 8-9 fluid ounces of food at a time. A bite or two too much and I feel sooo bloated that it practically puts me down for an hour.
So much for eating with impunity. The doctor wasn't kidding when he said it'd take about a year to heal, and most of that would go toward healing my stomach and surrounding areas.
A full month after surgery, I'm feeling so much better. I'm eating food. I'm sleeping in later than a few weeks ago. Staying up later. And when I eat, I eat for calories. Imagine that. Just a few months ago I was eating salad bars and counting every calorie I could avoid. Now I'm eating cereal bars, Little Debbie snack cakes, and whatever else I can take in during these mini meals I consume to get my calorie count up to maintain my weight. Oh, and that's way below where it was a few months ago.
But on occasion I get a bit overconfident. I'll eat just a tad too much fruit cocktail or too much house special fried rice, and the price I pay is this bloated feeling that borders on nausea. I hope that these meals will slowly begin to stretch my stomach a smidge, but so far that doesn't seem to happen.
But in time, Dr. Boyer said, my stomach will stretch a bit and by the end of a year it should actually allow me to eat larger meals, though never as much as I used to eat.
And if you recall, it's not such a bad thing that my meals will be smaller.
Friday, January 18, 2008
Dr. Z shows off his upgraded iPhone. I had to post this photo on Friday. I had to see Dr. Z to pick up a fresh prescription for pain pills and of course we chatted about his iPhone and other things.
Like helicopter skiing. In British Columbia. Holy crap, right? The good doctor and a friend plan to do just that in a few weeks. As in flying to the top of a mountain in B.C. in a chopper and then returning to sea level or thereabouts using skis. Talk about being a thrill seeker.
I did have to point out, however -- and Dr. Z agreed -- that using the map function, or even the iPhone, may be difficult. As he noted, there's only one cell tower out there near the mountain. Maybe.
But he did upgrade his phone with the improved mapping software Apple announced at the MacWorld show, so my earlier post was correct that we'd discuss that even it was before my actual appointment next Friday.
Seriously, I hope each day more and more newcomers find their way to the site. It's a way to spread the word that they should see a doctor if they have troubles swallowing, if they have severe heartburn or if they had heartburn but it seems to have gone away without medical assistance.
That is what happened to me. Years ago I had heartburn and used the state of the art treatment plans of the day: I spelled relief T U M S. Then, I took a job in Orlando, I liked it and found it to be less stressful, heartburn seemed to go away, Tums bottles were not needed. Little did I know that this couldn't be farther from the truth.
Heartburn went away because the cells in my esophagus were changing. They were becoming similar to the lining of my stomach, which meant my severe heartburn, now called GERD, was not pummelling the esophagus in quite the same way. But those altered cells opened the door to cancer forming in my esophagus.
It did. Years later -- this past summer -- I found it difficult to swallow some foods. A couple months later I went to a doctor who sent me to a specialist, Dr. Styne, who discovered a tumor at the bottom of my esophagus and occupying the lower third of the organ. He referred me to Dr. Z and Dr. Diamond, who treated me with chemo and radiation for a month and a half. Then, four weeks ago today I had surgery.
I've been declared cancer free but one can never be certain during the first couple of years after treatment. So while I have a damned good chance of a full recovery I'll have this uncertainty lingering for the next couple of years.
All because of some heartburn and a lack of desire or knowledge to see a doctor about it.
The moral of all this is get help. Get it early. See a doctor. Get treatments. Otherwise, you never know what's down the road.
Thursday, January 17, 2008
Dr. Boyer said I'm doing very well, better than many in my predicament. He said the recovery should last about a year -- mainly for my stomach to fully improve -- but that I'm making good progress. My prognosis has improved dramatically from the start of this journey, and now the next two years really are crucial. I have a 7 in 10 chance of survival, but after the two years that should "shoot up" -- and he didn't see any reason at the moment why that would not happen.
Still, there's no certainty. That's why this crack medical team I believe in will aggressively monitor my status every three months. It is possible, he said, for cancer to re-appear. I feel confident that won't happen, but one never knows.
I also finally learned the current capacity of my newly reconfigured stomach. It's about a fifth the size of a regular stomach, so each of my five or six daily meals should be about 8 ounces, give or take.
Most of my meals lately have been on the take side of things -- just haven't been all that hungry. This has led my weight to decline to a point close to my desired weight of 180 pounds. So if I can hoer around here, I'll be a happy camper. But that means eating about 1,800 calories a day, and I'm really not coming too close to that each and every day. Bagels, cheese, pudding, even milkshakes just don't add up fast enough for me.
Dr. Boyer said this is a good opportunity to eat as much as I want and enjoy amnesty in the process. Not a bad deal, but I just can't eat enough.
The doctor also told me that the "tumor board" of doctors, nurses and other members of the Cancer Institute's staff have had a good time joshing around about earlier mentions of the Yankees and Mets. It's good to see that we can all joke around in the midst of a very serious subject. It's always fun to poke fun at the Yankees and to have my Mets made fun of as well (they've earned it often enough).
Dr. Boyer said he probably will clear me to return to work the second week of February. I will have a visit with him soon before then, and he expects to clear me for work. Whew! He also expects to remove my "J-tube" at that visit. Right now it's a "safety valve" in case my diet falls too far below my caloric needs. I don't think I'm at that level just yet, but I agree it's good to have the option for now.
So for now I'll see Dr. Z in a week and after the big Apple conference (image of Steve Jobs at MacWorld by Getty Images) this past week I'm sure we'll have a lot to talk about. Like super-thin Mac laptops, needed improvements to the iPhone and the like.
Tuesday, January 15, 2008
I finally feel that I'm getting better. I'm noticing the improvements daily and while they're just baby steps they are steps forward.
Yesterday, for example, I took just two pain pills. Same for the day before. And along with this I'm also eating more. Cereal for breakfast, then a bagel (not from TooJays) and then more throughout the day.
For those wondering how painful the surgery site is and was, it is somewhat but was awful. Without the pain meds, the site on my side and back would be a 9 out of 10 early on, though now it's just a 2 or so. The site on my abdomen never really seemed too painful at all.
Numbness, though continues on my chest, side and down the right side of my right leg. I'm hoping it will go away with time. But as I told Dr. Boyer, if the choice is numbness or death I'll take the numbness.
Speaking of Dr. Boyer, I see him tomorrow (Wednesday) morning. I hope he'll agree that everything is looking pretty good. I think it is.
As long as the docs agree, I'm planning to return to work in early February. And I cannot wait. I'll have to adjust my body clock to be back on the night shift, but that will be fine with me. I've missed too much news already -- interstate shutdowns, killings, bombs on campus, etc.
Friday, January 11, 2008
But seriously, yesterday and today were the two best since I've been out of the hospital. I've taken far fewer pain pills each of these days and I've just felt better overall. Nowadays I seem to have energy in the morning and then fizzle by the mid-afternoon. I have to work on building up this energy so I can return to work in a few weeks. (I am targeting early February for my return.)
I also have begun to eat a bit more food than I had earlier in the week. A doughnut here, hot dog there. All in all it adds up to more calories than I took in initially.
I've received more calls and comments from friends and I truly appreciate all the kind words. I Truly believe that this method of treatment, new as it is thanks to the Greco trials out of Nashville (and Florida Hospital), I hope more and more will be saved. Patients might experience pain, but that's what the happy pills are for. They might experience a small amount of numbness that may or may not go away, but I'd much prefer a numb knee to, say, death. It's a good tradeoff.
I continue to thank the docs and nurses and the many others who helped save my life and to hope more people in my prior condition find wonderful medical professionals like these who can assist.
Meantime, I'll keep writing and urging those with difficulties swallowing, with severe heartburn, or those who had heartburn that seemed to go away to be examined by a doctor specializing in gastric matters. It could very well save your life. Take my word for it. Please.
Tuesday, January 8, 2008
Maybe because I'm keeping up on my meds. Maybe because I'm comfortable. Or maybe it's the fact I can sleep through most of the night and know I won't be awakened in three hours for a blood draw or a check of my vitals.
I any event, It's good to be home.
It's a good time, though to thank the many doctors, nurses, techs, therapists and others who made my stay at Florida Hospital so successful and -- mostly -- comfortable. These folks didn't just save my life. They expanded my perception of their jobs. And they're not easy jobs. I don't need to explain the complexities of surgery, doctoring or nursing, but others with jobs we sometimes take for granted also kept me going. Techs monitor your body and try to keep you comfortable, dietitians make sure you're eating properly, and the list could go on and on. You get my point.
I never did compile a full list of foods to eat or avoid at the hospital because soon after I started eating I had to stop and never got around to testing or tasting much of the fare. But let me suggest avoiding the hot cereals. The oatmeal and cream of wheat tasted like boiled and mashed cardboard. The fish dishes were good, as were some of the chicken items. That's about as far as I can go.
Since leaving the hospital I've kept up the meds and am today really feeling the best I've felt in a long time. The pain is down and my attention span seems to be increasing. The pain is down and my attention sp... uh, I just wrote that, didn't I? Oops.
I would like to than my friends and relatives who called and visited while I was in the hospital, and the many of you who wrote before and during my stay. You really made my days and gave me a sense of purpose. I don't know what to say, so I'll limit it to thank you very much. I appreciate all the prayers I was mentioned in, the wishes I received and the fact that you were all there for me. Thank you!
Enough of the sappy stuff.
I'll keep updating the blog daily or more often and keep you informed on my progress.
As for my cancer, I think I mentioned it earlier but might not have: I am 100 percent cancer free at the moment. All the pathology tests from the biopsies and items removed from my body indicate, in conjunction with the PET scan and CT scans, that there's not a lick of cancer in me.
I find it amazing that the doctors could do this -- and make it look relatively easy. They did. Drs. Z, Diamond, Styne and Boyer and their teams are just amazing. What more can I say? And I can't tell you the relief I feel knowing that for the moment I am a CancerVivor. I think I named this blog pretty aptly after all.
Saturday, January 5, 2008
I have to take it easy for several weeks to allow my wounds to heal, but otherwise I'm in good shape to go home.
I can't wait to get into my own chair, my own bed, kick my own dogs (only kidding, of course) and other informalities of home. What a relief.
Friday, January 4, 2008
Due to the cuts on my right side, he said, I might never be able to pitch for the Yankees. But aside from that, I'm looking good to go -- possibly by Saturday.
They'll see how well I do eating today before deciding. But the tests all look good and I have a feeling I'll be able to consume whatever food they put in front of me...as long as they give me enough time to eat it.
As for pitching for the Yanks: The Yanks?
I guess he doesn't know I'm a big Mets fan.
But this means I'll have to relegate myself to the minor leagues.
Ah well, another dream deflated.
I guess I'll avoid the oatmeal in the morning, though I'm even craving that horrid concoction at the moment. Eeek.
Mmm, chicken broth.
Though sources in the X-ray department told me yesterday that the study showed the barium swallow went as one would hope, down past my stomach to areas that looked a little odd on the screen.
So plans today include a hoped-for visit from Dr. Boyer and an accompanying OK to consume food.
But if that does not happen, my plan is to have food nonetheless. I know, ever the rebel. But what can I say, three days waiting for a verdict that doesn't come, in my mind, means I should make decisions about my food intake on my own. I can't see justification for anything less.
Oh, forgot to mention that sometime yesterday the 8,000th view of this site was pulled up by someone. This morning, there's almost 8,100 views. I hope the word is spreading about the blog, but mostly about the message in the blog, which is to get help if you have severe heartburn or difficulties swallowing. It can save your life.
Wednesday, January 2, 2008
So the docs are strategerizing to figure what the problem might be. Right now the consensus is to let Dr. Boyer decide which approach to take. Looks like that will likely be the infamous barium swallow study, but we shall see.
It has been wonderful hearing from my friends the past few days and I plan to keep you all informed as I find out what's going on with my body.
So far, I'm recovering nicely from the surgery. Parts of my back, right side and chest remain numb, but this is not unexpected, the nurses and docs say. As the swelling from the surgical areas goes down, I should regain much, if not all, of the feeling.
The surgical sites are healing well and have led to no complications.
I saw that our company finally has gone private, so let's hope that creates a sense of ownership and security for those of us left to put out the paper. I'm still planning to be back in early February and hope to see you all then.
I'll keep ya posted.