Monday, May 21, 2012
Saturday, April 7, 2012
Monday, February 27, 2012
Well, I lived. And I can eat but it was not an easy path. When I last sent an update it was about my upcoming reconstructive surgery. That was to last 8 hours. In fact, it took 11 hours, not that I was in any condition to watch the clock. Actually, to me it was a matter of seconds. They wheel you into the pre-op room with dozens of other lucky contestants and everyone is all smiles and excitement. They pull an extremely tight pair of hose on your legs to prevent blood clots and a large contingent of them asked me all about where was the stock market going, do I like Research in Motion and how about gold?
And don’t touch it,
was my reply, which were also the last words I’ve been able to say since then.
When I woke I had dressings on each shoulder, my left thigh and the underside of my left wrist. I was on a pain pump, which is supposed to allow you to treat your own pain by pressing a button, but to prevent you from taking too much because it has an automatic cut-off.
In fact I became heavily over narcotized on a morphine-based painkiller. Morphine is not good for me; it makes me crazy. I really thought I was going mad but after a couple of hundred years it finally wore off. During all this they kept giving me stool softeners and such that had, well, a predictable effect. Then they seemed surprised that I needed a bedpan. After the third “predictable event” I was isolated as a matter of course in case it was C difficile. Three is the magic number for “predictable events”. After that it is automatic isolation.
At least I got my own room. I also got to turn down any more stool softeners. This operation, despite its length was actually less hard on me than the first one but it still took three weeks to get out of there. Before I escaped, I mean, my release, I saw the usual daily train of doctors. One of them was Dr. Stephanie Johnson. The dressing on my wrist had been removed along with a lot of staples they put in to close things up. One staple in particular was right on a nerve and let me tell you, no painkiller is going to cover that. The scar under my wrist was an inch and a half wide, four inches long and very deep; it looked like raw muscle tissue and reminded me of Luke Skywalker’s wound in Return of the Jedi. I mentioned this to Dr. Johnson and she hastened to assure me that I wouldn’t even see it in 6 months. My first thought was, “What? Is she telling I am going to go blind?”
During this time my eldest son got married so I missed that. That is a constant theme in this situation: the world continues while you do not. Not much is as depressing as looking out a hospital window and seeing the world go on, see all these people walk along University Avenue, the cars drive by, the new wing get built and all the while you distract yourself on a 9 by 9 inch television screen. Pathetic.
Now, it’s never as simple as having an operation and then eating, of course. They would check my throat and look unhappy (such poker faces!) and I was told there were still a few holes, just pin holes and no comparison to the gaping fistula, but still holes.
Would they close? Oh yes, just a matter of time I was assured. Originally I had been told it would be 2 weeks, 3 at most and I would be eating. The operation was Aug. 17; I did not begin to swallow until Nov.22 but I’m getting ahead of myself. :
Not long after I was put into my own room I remember a bit of a panic on the part of the staff; I was too dopey to panic and I was covered in blood. My right lung had collapsed and I was bleeding quite a bit from the chest. But that’s another story and here is the link to that.
I finally went home after other fun experiences and resumed my wait. I was still on a feeding tube, still on the regular scheduled diet of canned nutrition. Here’s a coincidence, my ophthalmologist went to school with the guy who invented the canned liquid nutrition. It’s not very exciting to consume but it is a lifesaver.
We kept going back to see Dr. Gilbert every 2 weeks. At one point I got yet another weird infection and got another PICC line installed and another 6 weeks of antibiotics. This thing just keeps on giving! (There were some funny moments through all this, like the time I went to Canadian Tire to return faulty Christmas tree lights. I went to the service desk with a note I had written before I got there. The note said I wanted to return these lights because the cord was severed. I handed it to the woman at the counter. She read it and proceeded to write a reply when I signaled to her that while I couldn’t talk, she could. She then used her mouth to tell me I could get another set. That happens every so often; people tend to react to you the way you act to them. I had to laugh. )
I got through that and there came the great day at last, but first let me say I figured the holes had closed finally simply because I had stopped coughing. That meant the fluids in my esophagus were no longer entering my windpipe.
Anyway, on the great day the Dr. said, “Any leaks?” and I said I don’t think so. He said, “Really? Let’s have a look.” And he had me sip some water while he looked down there. You’d think they would have a dark coloured liquid for you to ingest so it would stand out; water is very hard to detect inside the body. But you’d be wrong. It’s just one of those odd lapses or maybe this thing happens so seldom it hasn’t been developed into a routine. I am only the 4th person in the world to undergo this operation. Instead they had me sip a coffee my wife happened to have and they couldn’t see anything so I was told that for the next 2 weeks I could have any liquids.
YAHOO! was pretty well my sentiment. When I got home the rest of the family had roughly the same sentiment. So I began to sip water or have a tea. I found that caffeine, after 18 months without it, could only be taken in small amounts. That is one dangerous national addiction we are legally allowed to have. There were moments of coughing and I thought maybe there was still a small leak but it turned out to be what everyone has when they ingest something. I even stopped drinking anything for a few days but when we next saw the Dr. he still saw no leaks and added that I could now begin to start taking solid foods. I had expected it to be a gradual thing, like starting with puddings and yogurts and pureed things but no, it was no holds barred. I was warned there were things that might be difficult to eat, like dry toast (but why would I want dry toast anyway?). I was warned that I would actually have to relearn how to eat. They were all too right about that. Eating, while wonderful, was also exhausting. You would not believe how exhausting it is when you are out of practice. I just hadn’t used my arms to eat for 18 months and I hadn’t chewed anything in all that time either. But let me begin by telling you what I had first: A Haagen-Dazs Bar, dark chocolate over vanilla. Then I made a can of chicken noodle soup. That was comical to watch me eat since I found I no longer had a slurp plus it led to enormous, um, burps for want of a better word since I was sucking in air through my trach every time I tried to slurp. Then I made instant pudding, chocolate of course. That night for my first meal I had a cheese omelet with buttered toast and jam. Um, um, great!
For the next two weeks I became a relentless eating machine. I would start each day with bacon and eggs, toast, jam, hash browns and 2 hours later it would be lunch followed by snacks (mostly puddings with whipped cream on top) then dinner and then 2 or 3 desserts. I just couldn’t get filled. I had felt hungry for a year and a half after all. It was a constant annoying empty feeling. All nutrition had been going straight to the upper intestine. My stomach would rumble like a thunderstorm; it sounded like I had a pack of wolves down there.
However, at the end of several weeks I became sick to my stomach and ended up at Emergency again. A good thing too as it turned out. The day Dr. Gilbert gave me the go ahead to eat he pulled out the G-tube from my abdomen. Fine with me; I hated that thing and it had a hole in it anyway. But what nobody thought of was changing my calcium dose. Everybody knows you need calcium in your diet for bones but it is far more important than that. This experience had taught me to marvel at the incredible complexity of the human body. I am amazed we continue to function at all. The slightest changes in the chemical balance can kill you.
Calcium is very important for muscle control. Without enough your body would tie itself in knots and be unable to unclench. Too much of it will cause your kidneys to shut down. Because I was now taking 6000 mg. of calcium daily by mouth it was hitting my stomach instead of going directly into the upper intestine as had been the case with G-tube. Just think: 6 grams. How much is 6 grams? Weigh it in your hand, you wouldn’t even notice it. And even when I began to feel sick I still took it since I had been told how dangerous it was to miss it. Two weeks of that had made quite a build up in my kidneys. A blood test at emerg caused a nephrologist to appear and I was admitted once again. It took several days and 35000 gallons of water to clear me out. I had once said after a sweaty bike ride last summer that if I could swallow again I would spend a week just drinking water. Well, this was that week. As it was, I was told that much calcium would have killed most people.
To measure the calcium levels in your blood requires frequent blood tests. This meant 2 or 3 samples a day and after a while they run out of places to extract it. It got to the point one day where I had 3 nurses in the room all trying to coax out some of the magic ichor. They finally got some but then the lab lost it. With friends like these who needs enemas. After 6 days and a hissy fit by me they let me out just in time for Christmas but only on the condition I go daily to the blood lab so they could monitor all the chemical soup sloshing around inside me.
The problem now was that they were so good at getting the calcium down it was now too low. It takes time to build up calcium and it just wasn’t working for me. It takes quite a bit of tweaking to get your dosages right since it is a bit of a guessing game how any on person will react to a substance. This is where the endocrinologist comes in, Dr. Segal. He is a whiz at this chemical game. He even kept track of my numbers while on holiday. He gave me a revised schedule that I guessed was meant to goose my calcium levels back in a hurry and I was right.
So after all that I made it to my mother’s house where most of my brothers and sisters and nephews and nieces and assorted boy/girl friends met for Christmas. It was the first I had seen most of them in a long time. At that time I was still only 150 pounds and seemingly unable to put on any more weight. I solved that problem by, you guessed it, eating even more. I am now back to my old weight and unfortunately have to watch what I eat so I don’t become fat. For a while I had the greatest diet on Earth!
To any of you who may be carrying some extra weight let me say this: rejoice in your fat! I had slimmed down to a point where I had almost no excess tissue and I can tell you, that is painful. You need that padding to do more than cushion you; you need it to prevent your own bones from hurting you. Believe me, better overweight than gaunt.
So here I am now, back to weight, infection free and normal in every respect except for speaking. That will be the next step. It is a minor adjustment, not really even an operation but it has to wait until the tissues in my neck have softened up a bit; there is, of course, a certain amount of scar tissue and that starts out hard. It is amazing how the scars do fade away; not quite as well as Dr. Johnston told me but they are getting there. When I get the device that will enable me to speak I am warning you now, I will probably never shut up.
I don’t need the scars to remind me of what I have gone through in the last 18 months, or eleven years for that matter. Back when I was first diagnosed with esophageal cancer I was treated by 45 days of radiation and 5 weeks of chemotherapy. The survival rate for that was only 40% but I not only survived, I made a complete recovery and continued on my merry way for the next 10 years. This time I had an almost unheard of surgery and I have survived it pretty well intact. Wow! Even I’m impressed. Perhaps I could become a motivational, uh, gesturer. I’m ready to go on. Raise the curtain.
P.S. Let’s eat!
Jeff Leonard, Feb., 2012
Wednesday, February 8, 2012
One of the many adventures of Jeff in the Hospital (available as a spring loaded pop-up toy for Christmas, complete with Authentic looking drool and slime) has to do with a drainage tube inserted into the top left side of my right lung. What had happened was the lung had partially collapsed following the recon surgery. The left side had previously had a massive bleeding fit that required 2 units of replacement. I swear I must be built wrong. I cannot go into a hospital without some part or organ standing up and waving for attention. If I had to give birth it would probably end up as an external sac with a wide variety of mutations just for kicks. All this despite the fact that I have gone all these years the same weight and generally very fit. It is just some weird hospital gene. On the other hand I have survived cancer twice.
Anyway, after that 10-inch tube had been planted in me by a young thoracic team accompanied by sherpas and some Canadian Oil Sands specialists it began draining blood and water into a device called a Pleur-Evac. This was to re-expand the lung and restore normal breathing, which had become noticeably shallow. All very well and good; it did its job along with a host of other plumbing that made me look like the Chia Pasta Dork (now available for sale this Christmas …you know). However, it was painful to have in and anyone can tire of the joys (and buzzes) of Percocets. I wanted to be free of the tube and Pleur-Evac. I asked when this might happen.
“When might this happen?” I wrote on my pad.
“Tomorrow, after midnight you will be visited by three spirits; the Ghost of X-Ray Past, the Ghost of…, you know the drill”
“The first 27 x-rays are just for fun but on this day the technician, er I mean Ghosts, will check to see if you are fully expanded. They will come at odd hours. Be prepared! Be vigilant! They don’t have all day. They will appear at the moment you are finally set to doze off. That is their way.”
And so it was. After the second tech, er Ghost, a few hours passed and a man showed up in my room.
“Zeffrey Layonard?” he suggested.
I wiggled my ankle tag at him playfully. That’s where they had put it.
“You haff had X-rays today?”
Yes, two already, I wrote.
I wrote 9 and 1:30.
Gude. I am Doktor Moricio Pipkin, a fellow of Dr. Darling’s thoracic team. I vill check zese x-rays. If they are gude, I remoof tube.”
I nodded. He gave one short crisp bow and left.
A short while later he returned.
“Iz gude.I remoof tube,” he gave a, well, ghost of a smile and left.
Again he was soon back with what I took to be his Uninstall Files, which he opened. I expected him in this age to press Execute or Run but we haven’t gotten there yet. Instead he took out much gauze and needles and a little jar of some freezing substance (thank God!) and those little scissors that a kindergartner would laugh at and went deftly to work. I didn’t feel a thing. I watched all I could and finally he grabbed the tube and said,
“Breathe in deeply zen breathe out.”
I did and as I was exhaling he pulled up so much hose I wondered I didn’t feel it in my ankle,
“Done,” he smiled and I smiled back and mouthed, “Thank you.”
He finished dressing the spot and said,
“Tomorrow you may remoof the dressink.”
And he left and I asked God to bless him and bless me and bless everyone else everywhere.
Monday, March 14, 2011
Back by popular demand, it’s our once intrepid spaceman, Jeff Leonard. However, he’s a lot more trepid now and more spacey than spaceman. It has been a long road so far from the operation. One of my predictions was accurate- recovery will take 2 or 3 hundred years. I had the operation on July 28 and woke up in what is called a Step Down room. Step down, more like Bottom of the Mine Shaft Room. I remember it and how it looked and who was the first nurse and the first words I wrote on my pad; “Poster Boy for Halloween”, but it’s still surreal. Soon I was moved to a regular semi private room and the recovery began.(ffffttt)
I think I was supposed to be there originally for 2 weeks but early on one doctor noticed a small blister on the side of my neck. He thought nothing of it and broke it. It turned out that was the sign that I had become infected.(bbbrraaatt)I was booked for another operation. Here is something I learned that may be useful. Apparently hospital time goes by Standard Hawaii Time. I’m tempted to insert International but too obvious? It was bad; a lot of healthy tissue had died off. I have a scar on my left thigh that goes from the knee up to the hip(ththththtpppttt) and 2 skin grafts, one to either side of that. To replace the lost tissue they needed to move my left pec muscle up into the neck to close some holes so I also have a great big C (unlike the band) of staple scars on my chest. (For an accurate depiction of staple remover see my blog)Needless to say I was less than enthusiastic about all this, at least not in my few lucid moments. However, it’s not like I got a vote. Probably just as well.
What followed was a long stream of days that were a roller coaster of emotions. A small improvement would send you soaring only to be followed quickly by another declaration that something was not healing according to plan. Then came the plunge into frustration if not despair. Then another 5 minute period would start. Did I mention lucid moments? In the beginning I found I was often groping in the air for(errrruuupppttsss) some knob or button I had been dreaming about. It was quite odd. To continue; the days and nights became an almost hateful blur of feedings, calcium injections, tests and pokes and not a few moments where I thought I was going to suffocate when the trach tube in my throat became blocked. What had started as perhaps 14 days of healing before swallowing could be attempted stretched into 5 weeks of hellish routine. Pretty well everything that could go wrong did go wrong.
I had a TV rented and quickly came to know every commercial ever dreamed up, probably by North Koreans, and loathe them. I’m am glad I don’t have small children now; apparently there is a Fisher /Price toy or learning centre for each 5 minute period of your child’s development. And I am surprised women have any hair left. If I were subjected to the thousands of ESSENTIAL hair products that they are I would shave my head.
I had books and newspapers and my wife came to see me every day and that was a blessing. My children often visited as did many of my siblings and sisters in law. We played endless games of cards or scrabble or I drew silly cartoons of the Hadespital staff. The floor was a dreary display of people looking out of their doors at the slightest sound. I came to budget my time carefully and not read the newspaper until the end of the day so I had something when there were no people around. I was reminded of someone I worked with once; his favourite past time was feeling sorry for himself. He really enjoyed crawling inside a beer bottle and wallowing in self pity. That was not possible in recovery. You had roommates who had their own problems, of course, and you instinctively tried to help them. The nursing staff had their own stories too. There was one I remember who had 2 marks on her arm. When I indicated a question about these she told me she went for dialysis every night. I couldn’t work there.(psssttt) Here was a woman who had a 12 hour shift, half of them in the dead of night, who, when she finished her shift, went over to the next hospital to have her own blood cleaned out. That was a part of my stay, little eye openers like that. There were the nicest people there too, either(ffffffpppptttt) as visitors or patients. There was a couple from Tamagami, another from Christian Island, and a young man whose professional cricket days had just ended. They became bound to you, whether you wished it or not. They came back to visit me after they got out and wished me all the best. One tried to eat a playdough cupcake my daughter made for my birthday. I couldn’t blame them it looked so real.
(BBBrrraaattt!) When they finally thought I was fit to go home, or maybe it was fit to be tied, I couldn’t get out of there fast enough, literally since a 5 minute exit from there takes 4 hours. Anyway, off we went, I shuffling and tottering from weight loss and lack of exercise, and my wife with the bag of supplies she had begged, borrowed and stolen. It was quite a haul and I had use for all of it. I still could not swallow.
(ppphhhiittt) I should explain the indicated sound effects for those who haven’t figured it out yet. From the various liquids that course down my g tube, maybe the feed, maybe the calcium; maybe some other treat, there had developed a LOT of gas which was not altogether controllable. It has gradually eased up but for quite a while there I was a smash hit to every young boy who dreams of perfectly timed fart jokes. Sometimes dignity must take a back seat to recovery.
* * * * *
Those stars are a literary device to indicate the passage of much time. I had written the first part in the summer. I made it home and went for as many short walks as I could and the rest of the day was spent struggling with pumps, vaporizers and enough Kleenex boxes to rival the Great wall. It is now February. I still can’t eat. I did learn a neat trick to speak, though; you put a Kleenex or thin paper over the trach tube and speak and it acts like a speaker diaphragm. Pretty clever, I thought and only very scary to anyone who hears it. My family prefers me not to use that, I think and they have become quite adept at reading my lips. Mind you, I generally don’t speak much these days. It is an interesting thing to observe; I have found the vast majority of things people say are quite unnecessary for communication. They are very necessary for social interaction but not really for communication. It certainly goes a long way to explaining why body language is so effective. Having said that the thing I miss most about speaking is making jokes; so many arise in any given situation and it is frustrating not to be able to convey them. It is tough only having oneself know how funny you are, plus you look like an idiot always grinning away during conversations. Excuse me, I’m doing it right as we “speak”.
Part of the reason this has dragged on so long is that back in Nov. I became infected while at home. At first I though I had just played too much guitar as my right shoulder became very sore. Eventually my right arm became virtually useless from the crippling pain. It was diagnosed at last as osteomyelitus, an infection in the collarbone. This required heavy duty antibiotics. They prescribed a pile of capsules that I must twist apart and dissolve in water. By this time I was getting up at 5:00 AM daily to have a feed, antibiotics, calcium, Calcitrol, magnesium and I checked with doctors but no, there is no such thing as a dissolvable kitchen sink.
These antibiotics weren’t enough so back I went to the Hadespital for a few days of IV antibiotics. I had developed a large lump on my clavicle which one day, having squeezed and probed as much as they could without causing me to pass out they decided they would lance it AND squeeze as may be seen in the attending diagram. After 4 days of this I decided I preferred alarm clocks to the Spanish Inquisition and was allowed to go home again to a 6 week regimen of nurses visits to set up the IV on my feed pole, Slim Jim, and to clean and pack the wound daily.
Through all this Christmas came and went. I baked cookies and other desserts, I made the turkey dinner complete with mashed potatoes, French cut beans in mushroom sauce with baked onions and everything else you could want. There was only one problem: I couldn’t eat any of it. The time came when the antibiotics were over and I thought I was finally going to hear about reconstructive surgery.
Nope. “Now we want to wait and see how you are after the antibiotics. “ I can tell you how I was: antisocial! But I waited some more and finally the doc said end of Feb. About a week or 1000 days after this we got a phone call from the Hadespital. I am to have an endoscope March 1 by my surgeon and a thoracic surgeon. The reason for this was because they have already used the vessels in my neck, they are probably going to use some from my chest now. This is Dr. Darling’s specialty. She is the thoracic surgeon I saw before the very first operation.
These are things I try not to think about if I can help it; I can’t alter any of it so I just hope to pass the audition. For distraction I have upgraded my Mac, my turntable, bought a new stylus and a new headshell, bought a pair of VERY nice speakers, tried a dozen variations on guitar strings by brand and gauge, read dozens of books. I’ve kept a tight rein on how much TV I watch. Oddly enough the majority seem to be cooking shows. But since it is my party and I’ll snub whom I want to I am going to take this opportunity to talk about one ad in particular. I love this ad, it is so stupid. I believe it is for some breath freshening gum or mint or the like. In it various examples of food trail after a woman who is traveling. It has an onion and a cup of coffee and something else but what I remember best is this pink icing doughnut. All the foods keep trailing after this traveling woman but the pink doughnut has the most trouble; it has these stubby legs, one extending from either side of the lower half of the torus, and there is some cute music going on during this epic chase scene. What kills me about this ad is that the doughnut looks like some kind of ambulatory anus and because it has trouble it is always hindmost, again reinforcing the image. I keep rooting for someone to take a bite out of this ambulatory anus but no one ever does. The gum or mint or whatever it is finally causes the foods to disappear or at least take a different flight and when it’s over you are left musing on the fates of peripatetic munchies, especially ambulatory anuses like doughnuts. So much for TV.
So here I am, not seeming much further along than I was last July. After the endoscope they will know if/when they can perform reconstructive surgery. This operation is very difficult, very risky. It has only been performed 4 times in history and only by my surgeon who is a pioneer in the medical world. I have often wondered about stem cells but they will not come into play here. We have all seen articles in the media about new possibilities of growing new parts but the reality is still many years away.
I haven’t described the pain involved in all this and I am not going to now. I think we can all agree cancer is a nasty thing. This particular version has been about as bad as I could imagine having. I would wish this on Hitler and Stalin but that’s about it. There are many side effects too. You can’t go around cutting major portions of your anatomy out without paying for it. They subside eventually but it does take time. It is no way to be. I am reminded of a framed piece of wisdom my grandmother had on a wall at her cottage a very long time ago. It read:
It Is Better To Be
Healthy, Wealthy and Wise
Than To Be
Sick, Poor and Stupid.
Ah, words to live by!
Wish me luck.
July 2010-Feb 2011