50 Cent may have survived nine bullets, but I survived nine tumours

I met with my doctors today for the first time since beingreleased from the hospital. After a brief discussion touching on the highlights(and lowlights) of my recovery, I was given the pathology report for my stomach,now estranged from me some six weeks. Turns out it was infested with signetring cancerous tumours. Nine of them, to be precise. Nine.

Needless to say, any lingering doubts I may have hadregarding the necessity of living the rest of my life without a stomach havebeen quashed.

They were small—the largest was just 2.5 millimetres in diameter—andall were classified as T1a, which, technically, is pre-cancerous, but my doctorassured me that they were malignant and would have continued to grow.

My always helpful genetic counsellor was with me for theappointment, and as we walked out of my surgeon’s office she gave me a highfive and suggested it was a night for celebration (I let slip to her earlierthat I have now successfully imbibed both wine and beer since the surgery). “You’rea success story” were the words she used.

Indeed, even my doctor said that she would be using my caseas an example. When I mentioned to her that I thought she already had, giventhat my wife’s gastroenterologist friend had seen my case come up at a medical conference she attended, her jaw dropped. (Patient names are never used atthese things; I explained that our friend guessed it was me based on the patient’sage, the timing, and the rarity of CDH1 cases.) I told her to goahead and show my case to anyone who wanted to see it.

The long and the short of this post is that everyone ishappy. My physicians are happy that they have done a good job, my geneticcounsellor is happy to have yet more proof that genetic screening saves lives,and I (and my family) am happy that my life has been saved.

Of course, I still have to deal with the long-term physicalissues resultant from my total gastrectomy.

Speaking of which, I met with my dietician today as well. Shewas impressed that I’m managing to take in 1500-1700 calories and 1.5 to 2.0litres of fluid per day. She also thought that I was hitting all of mynutritional marks. She did express concern about my ongoing food-caught-in-my-throatissue (which I have mentioned a couple of times in this blog) but noted that itoften becomes less frequent with time.

My doctors said the same thing, but mentioned that if itdoesn’t get better with time it could be the result of excessive scar tissue thatmight have formed at the point where the oesophagus and intestine meet. If that’sthe case, they’ll do an endoscopy (throat scope) and use a special gizmo tostretch out the scarred area, creating a little more room to let food passthrough. Sounds nasty. I’d prefer if the problem just went away on itsown.

Lots of other little things came up over the course of the afternoon (my incisionis apparently healing well, my minor but continuing weight loss is no cause foralarm, and the numbness around my belly may or may not go away—no surprise there),but I won’t bother with the details here.

The general gist of things is that, thanks to the work of the fine team of professionalsattending me at Toronto’s Mount Sinai hospital and the wonder of modernmedicine, my life has been extended.

Oh…and I’ll soon have some awesome photos of my stomach thatI’ll put up here for everyone to see. We’re talking specimen shots, dissection pics, and even close-ups of those nasty tumours (all courtesy of my geneticcounsellor, who deserves a shout out for offering to send them to me—thanks!).Ergo, if you see a future post with the headline “Hey, look at my tumours, everyone!”and you’re the squeamish sort, you may not want to click through.

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Hooch is back on the menu!

I performed a couple of dietary experiments today thatconsisted of eating a Subway Melt sandwich and drinking a glass of red wine.

First the good news: Both went down pretty smoothly—especiallythe wine. Sipping drinks is my forte these days, so slowly working away at 225millilitres of wine felt pretty natural. Thing is, I was hosed after the first swallow.Well, I could feel it anyway. Seems I’m now a ridiculously cheap drunk.

Now the bad news: At around the halfway point in my sandwich(roughly 45 minutes in) I took a couple of normal bites and forgot to chew myfood into a liquid-like mush, which resulted in the now familiar feeling of somethingbeing stuck in my throat. It lasted for about half an hour, during which time Iwas unable to eat anything else. I’m sure the smaller bites/slower eating thingwill eventually become a matter of habit, but I don’t know that I’ll ever getused to the idea that a six-inch sub requires a 90-minute investment.

Still, I have to admit that the sandwich tasted good and thatthe wine was a welcome change of pace from water and V8.

I’d better be careful, though. My wife’s best friend—a gastroenterologist,conveniently enough—has some understanding of what I’m going through, and shementioned that people who have surgeries that involve the removal of all ormost of the stomach are often more prone to alcoholism than the rest of thepopulation.

I’ve never been a big drinker—prior to surgery I typicallyhad only a couple of drinks per month—but alcoholism runs in my family. What’smore, as I told Kristy this evening, sipping that glass of wine was the closestI’ve felt to eating or drinking anything in a normal, natural manner since mysurgery. I’m already looking forward to having another glass sometime in thenear future.

But I probably don’t have much to worry about. For starters,Kristy would never let me become a drunkard. We’re together pretty much all thetime and she monitors what I ingest like a hawk. Besides which, she’s nocomplacent 50s-era housewife; she’d kick my butt into next week if she ever thoughtI was becoming a sot. It’s nice to have someone who cares about you. 🙂

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Gutless goes weekly…and a little rant

Just a quick note to let everyone know that the frequency of our blog updates is about to decrease. While I’ve enjoyed writing these posts, they don’t pay the bills; it’s time for me to get back to writing stuff that has a paycheque attached. Thanks again for all of the support you’ve shown over the last six weeks.

That said, both my wife and I will continue to post updates on significant developments in my ongoing recovery (perhaps one or two per week), as well as the occasional rant. We’re grateful to have such a supportive audience willing to read about the trials and tribulations associated with not having a stomach. 

Speaking of which, I recently caught up with my sister in Vancouver by phone. She’s almost six-months post-op and there are some days that she struggles to take in even 100 calories. She tried to return to work, but simply wasn’t able to maintain her strength (it doesn’t help that she still experiences frequent bouts of nausea).

We briefly discussed the enthusiasm with which doctors often recommend this surgery to people with the CDH1 mutation, and the seeming lack of concern given to potential quality-of-life issues after the operation. It’s explained that we’ll need to eat less, that we’ll lose some weight, and that we’ll have to take certain supplements. We’re told of possible surgical complications, such as leakage, cardiac arrest, and pulmonary embolisms. Then we’re told that if all goes well we’ll enjoy long, more-or-less normal, healthy lives.

As many patients have discovered, that’s not always the case.

My sister wondered, for example, why no one paid attention to the fact that she has irritable bowel syndrome before she went under the knife. Indeed, she’s beginning to suspect her IBS might be the cause of her nausea and vomiting, which it seems few other total gastrectomy patients have experienced with such frequency and intensity. Should doctors recommend for someone with a mutated CDH1 gene and IBS to undergo a prophylactic total gastrectomy? It’s a good question. 

After reading several blogs in which total gastrectomy patients have complained of long-term complications that have affected their ability to keep up their enegery, stop losing weight, and maintain a job, it makes me think that the surgical community needs to develop a better understanding of the consequences total gastrectomies can carry when undertaken in cases in which pre-existing medical conditions exist. Keeping oneself from getting cancer is extremely important, but so is the quality of one’s existence.

Of course, the only way this understanding will come about is through research. On that note, the Chelcuns (a Boston-area family the members of which are no strangers to HDGC) has established a fund dedicated to helping HDGC research. You can check out their website here: http://bestronghearted.org/donate/.

As for my sister, her doctors have told her that her body will continue to adjust to its new anatomy over the next half year or so. She has hope that her guts will eventually reach an equilibrium of sorts so that she will be able to eat enough to maintain a healthy, happy, normal life. I share her hope.

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Gutless rock star

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I’ve been finding it difficult to express in meaningful terms how long
it now takes me to eat a meal. Telling someone that I spent half my
morning devouring an English muffin with a couple of slices of bacon
and a bit of cheese, for example, lets people know the duration of the
meal in vague terms, but doesn’t really convey the length of time I
need to wait between bites.
 
However, I think I might have just stumbled across a good way of
explaining how long it takes me to process bits of food.
 
I was playing Rock Band 2 tonight with my wife and daughter (attached
picture shows Scarlett, three years old, singing–and scoring an
impressive three stars on–Weezer’s “Buddy Holly”). I munched on
smallish chunks of my supper between songs, and it took about 15 or 20
tracks–just over an hour–for me to eat two medium-sized spring rolls (about
150 grams, or 250 calories).
 
Put another way, imagine listening to one of your favourite albums
with a small plate of food in front of you. Take a small bite at the
beginning of each song, chew until the first refrain, swallow, and
wait until the song ends before taking your next bite.
Congratulations! Now you know what eating without a stomach is like.
 
Assuming I live to be 75, I only have about 70,000 of these epic meals
ahead of me. That’s frickin’ awesome.
 
On the bright side, it might an opportunity to branch out. I’ve always
wanted to be a music reviewer.

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It’s official: I could not survive the apocalypse

 

I’m a geek. Not your stereotypical uber-intelligent nerd capable of hacking computers and building robots, but rather the lower-tier variety commonly identified by their passion for science-fiction, love of video games, and misconception that they are cool because they enjoy bands like Kraftwerk and Art of Noise. Here are but a few bits of evidence proving my geekiness:

A) I spent much of the nineties worried that I might die before George Lucas finished the next Star Wars trilogy. (On a similar note, I spent several years in the early part of the 21st century worried that I might perish before seeing the concluding chapters of Peter Jackson’s The Lord of the Rings movies). B) I’m not the least bit concerned that I might one day look back on the thousands of hours I’ve spent playing video games and think that I’ve wasted my life (it occurred to me once a few days prior to my surgery as I blew the helmets off of my glowing-eyed enemies in Resistance 2, but my game-addled mind quickly dismissed this thought as so much Bantha poodoo). C) My primary criterion for assessing the quality of any new music I hear is whether or not the band makes use of either a vocoder or a Korg MS-10 synthesizer.

What’s more, I often find myself thinking about how I might survive should I ever find myself the last man on Earth after some sort of global catastrophe—a decidedly geeky intellectual pursuit. I’m no survivalist, but I’ve always believed that I’d manage to eke out an existence as a scavenger of some sort, living off the ample remains of our civilization of excess.

That’s no longer the case. As my sister—who is also a geek—and I discussed prior to my surgery, we are both now forever reliant upon the pharmaceutical industrial machine. Now that our bodies are unable to absorb iron and folic acid in anything but pill form (and vitamin B12 through any means but injection), we are always and evermore dependent on the timely manufacture of these dietary supplements.

Ergo, should we somehow manage to miraculously survive the apocalypse, we would exhibit symptoms of anaemia, among other maladies caused by our condition, within just a few months if we were not able to find the pills and injection materials we needed. And once all existing supplies expired, we’d be screwed.

Just one more reason to dread the end of the world, I suppose. What a bummer.

 

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Life in the slow lane

Scarlett and I met up with some good friends today for a visit to Riverdale Farm and a playdate. This is the first time seeing each other since Chad’s surgery, and one of them remarked to me how relaxed I looked. I took that as a compliment.

For the past several years (maybe excluding my one year off for maternity leave) I’ve been many things, but relaxed hasn’t been one of them. I know that I thrive on being busy, and have thankfully found myself a career that definitely keeps me going. However, for the past four weeks (aside from a pretty stressful first week when Chad was in the hospital), I’ve been slowly, but surely relaxing. Not only am I feeling stress-free, I’m not filling my days up with appointments and planned activities as I would normally do. It’s freaking Chad out. Every few days he looks at me as I’m having a nap on the couch or flipping through a magazine and asks if I’m going stir crazy yet. The truth is, I’m not. And the best news is that I’ve got three more luxurious weeks to do more wonderful nothingness.

Life in the slow lane is a whole new place for me to be, but as long as Chad and Scarlett are along for the ride, I’m perfectly content to sit back and enjoy the scenery.

kp

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Would you rather have no stomach or…

I’ve always been partial to the childhood game that has kids asking each other, “if you absolutely had to choose between dreadful thing A and appalling thing B, which would you select?”

My wife picked up a party game many years ago called Zobmondo that has about a thousand of these wonderfully immature and often disgusting questions. My favourite of the game’s dilemmas is this: Drink a cup of pus or eat a scab sandwich? I used to think scab sandwich, but now that I have to chew everything I eat until it becomes a paste-like mush before swallowing I think I’m going to switch to the cup of pus.

Of course, these days I’ve found myself thinking up a whole new set of unpalatable this-or-that questions that go something like this: Would you rather have no stomach or (insert ailment or missing body part here)? Example: Would you rather have no stomach or no leg?

After plenty of pondering, I’ve decided that I would rather have no stomach than any of the following issues:

  • Severed hand (or hands)
  • No eyes (or loss of eyesight)
  • Cancer of any sort
  • Heart disease 
  • Extensive burns or extreme physical deformities
  • A mental handicap

On the other hand, I’d waste no time in trading my no-stomach status for any of these maladies:

  • No sense of smell
  • No sense of taste
  • Severed foot (but not feet or legs)
  • A severed finger (or two or three—but not a thumb)
  • Loss of kidney (only one, clearly)

And here are a few things on which I’ve been teetering back and forth:

  • Deafness (movies have subtitles, but I’d miss my daughter’s angelic little voice)
  • Muteness (I’ve always preferred writing to speaking, but the inability to talk would be a major hassle when out in public)
  • Castration (which do I like more, food or sex?)

I think my wife wonders how healthy it is for me to be dreaming up such questions, but I’ve always thought that if you can’t laugh at your problems then you’re in real trouble. I’m just happy that I don’t have a missing stomach and any of the issues listed above. That would be the sort of bummer that might put a permanent kibosh on my glass-is-half-full attitude.

Then again, I could always start posing question about whether it would be worse to have no stomach, a missing hand, and heart disease or no stomach, a missing hand, and first-degree burns covering half my body. Now that would be a truly Zobmondo-worthy conundrum. 

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