It’s been nearly a year since my last writing, so I figured it high time that I post an update.

Over the last year I’ve received plenty of emails from fellow total gastrectomy patients—both those who have had their surgeries and those who are facing the prospect of going under the knife—thanking me for recording my experience and providing information on what to expect. I couldn’t be more flattered. This is assuredly a very crappy thing to go through, and the thought that I’ve played some small role in helping others to endure it is quite satisfying. If you’re a total gastrectomy patient stumbling upon this blog for the first time and have questions that I haven’t answered in my anecdotal posts, feel free to email me. I’m more than happy to share my experience with you.

Now, I presume that the big question most of you are eager to know is this: How is stomach-less life one year post surgery?

In a word, great.

I’m as active as I ever was, feeling healthy, and maintaining my weight. I can eat pretty much anything I like these days (just a lot more slowly), and I hardly even think about my condition.

In fact, that’s been the biggest change over these past 12 months. Slowly, without noticing, my eating habits have readjusted themselves so that they now feel normal. Completely routine. And since I work at home and can eat at leisure in front of my computer, I rarely feel like my longer meals are interfering with my lifestyle.

Returning readers will remember that I complained a lot about uncomfortable bouts during which I felt as though something was stuck in my oesophagus that led me to sometimes spend an hour or more spitting up thick, clear saliva. This still happens, though far less frequently. It’s been months since the last episode.

I was supposed to see my surgeon to determine whether I had a stricture—excessive scar tissue obscuring the oesophageal passage—but her people never managed to make the appointment happen. Consequently, I just figured out how to deal with it.

Here’s what I think happened.  

I subconsciously learned to chew my food a lot better, eat more slowly, and recognize the first signs of the problem occurring, at which point I just stop eating for a moment. Gently rotating my neck left and right often makes the sensation go away, and breathing shallowly helps a lot as well (it feels as though deep breaths expand my chest and constrict my oesophagus further).

Even if the feeling persists, I no longer get worked up about it, which is key as well. I think this calmness keeps my body from tensing up, which seems to make the feeling worse.

But, like I say, the feeling is now blissfully infrequent.

A bigger concern for me is that I’ve returned to many of my bad eating habits at night. I’m eating relatively healthily during the day. A typical schedule might include yogurt, an English muffin with an egg, and some apple juice in the morning. Then I’ll have some soup (wonton, French onion, and clam chowder are my favourites), crackers, apple sauce, and V8 in the afternoon. Supper might be pasta, perogies, or tempura. Lots of water, iced tea, and diet, caffeine-free sodas keep me hydrated. It’s a decent balance, I think. Bit of everything from all the food groups.

But then in the evenings I fall back on junk food. Chips, chocolate bars, and the like. The processed nature of these foods make them go down easier than anything else, and their condensed calories are a shortcut to reaching my daily energy goals.

I don’t think I’m eating more junk food than before my surgery, but it’s still more than I should. I’ve recently been trying to replace some of it with fruits and salads (grainy foods, which are harder to chew to mush, used to be much harder for me, but seem to have become options again over the last few months as my eating habits have readjusted). But now we’re talking about a lifestyle change rather than something forced on my by my surgery. A diet, basically. I’ve never been good with choosing to eat things I don’t really enjoy for health reasons. Still, that’s where I am. No use denying it.

And that’s about it. Life without a stomach is good.

I don’t expect I’ll be updating this blog again for a while unless something of significance related to my status as a man without a stomach occurs. Perhaps I’ll do another post in a year’s time. Until then, I bid happy days to both my gastric-enabled and gastric-impaired friends.

Post Script: I was just reviewing some of my earlier posts and was delighted to find that the most popular--with more than 9,000 views(!)--was the one I titled "Hooch is back on the menu!" Rest assured, it's still there. :)

No, this isn’t a photo from a NASA space probe showing some strange alien landscape. What you are looking at is a tiny bit of my cancer.

It’s a greatly magnified cross-section of tissue from my stomach, now estranged from me nearly four months. The big rounded ridge (upper left-centre) is “abnormal” tissue. Under greater magnification, the tiny black specks just under the surface of the ridge would look signet-cell rings, or so says my genetic counsellor at Mount Sinai Hospital.

Put more plainly, it’s visual proof that having my stomach removed when I did was a really frickin’ good idea.

As for why it’s been so long between posts, the reason is simply that I have little to report. Aside from my weird eating schedule and occasional problem with things getting stuck in my oesophagus, life is back to normal. I’m eating enough to halt my weight loss, working as much as I ever did (hence, less time for hobby blogs like this), hanging out with my peeps, and even playing golf. In fact, I feel about as healthy as I ever have.

I have another doctor’s appointment scheduled about a month from now at which I will petition for an endoscopy. As I’ve previously noted, there’s a decent chance that my throat issue could simply be a stricture, which has the potential to be fixed via a very quick procedure that can be done during the endoscopy. If that turns out to be the case, I’ll be completely satisfied with my recovery. (The flapjack-sized patch of numbness on my belly is pretty weird, but easy to cope with.)

I’ll be sure to post an update here once the throat scope is scheduled. Until then, I hope everyone enjoys the summer. Having wondered not that long ago whether I would see another thunderstorm, I’m definitely appreciating the warm weather in a whole new way.

PS - Almost forgot... Thanks to a couple of CCAC visits, I'm now qualified to inject vitamin B12 into my abdomen! My daughter thinks it's pretty cool. I do too.

It’s been eleven weeks since my total gastrectomy, and I’ve spent most of that time whining about all the disadvantages associated with not having a stomach. I reckon it’s high time I pay tribute to some of the benefits.

The biggest boon has been weight loss. Of course, this won’t apply to folks who had no problem with their weight prior to surgery, but for someone like me, who’s spent most of his adult life carrying around an extra 15 or 20 kilograms, it’s kind of awesome.

I’ve been rooting around in my wardrobe off and on over the last couple of months, digging out duds that I haven’t fit into in years (lucky for me men’s fashions age a bit better than women’s). I’m currently wearing a pair of dark blue jeans with a 32-inch waist that I bought myself as a reward a couple of years ago after losing 10 kilograms—then proceeded never to wear, having already regained some weight by the time I got the pantlegs hemmed. It almost feels like getting free jeans.

I also treated myself to a sweet skinny person belt; one of those ridiculously expensive, already broken-in brown leather belts that come in nothing but small sizes and can be found only in high-end clothiers like Holt Renfrew. (I picked it up for 80 per cent off at HR Last Call, and it still qualified as the most expensive waist-cincher I’ve ever bought.)

Then today, while riding up our building’s elevator, I happened to catch a glimpse of myself in the mirror while stretching. My sweater lifted a bit and I saw a profile of my midriff. It looked good. Not Calvin-Klein-underwear-ad-good, but nice enough for a guy who once suffered sore abdominal muscles from sucking in his belly too deeply and too long while schmoozing at one of his wife’s company’s fancy Christmas shindigs.

What's more, while attending the birthday party of a friend’s son yesterday nearly a dozen people I hadn’t seen in months told me that I looked great. I can’t remember the last time anyone uttered those words in my direction—save, of course, my lovely and generous bride, who has offered them even in times when I haven’t necessarily been deserving of them.

Weight loss and associated perks aside, another benefit of having a total gastrectomy has been cash savings.

Both restaurant and grocery bills have dropped noticeably since the surgery. The simple truth is that I eat less, and what I consume tends to be pretty cheap. For example, my lunch at the High Park cafe today consisted of a wholly satisfying $4 French onion soup, and the supper I'm eating right now is a single slice of pizza.

Plus, I’m pretty sure I’m spending between $10 and $20 less per week on junk food. I still eat things like chips and chocolate on occasion, but a single 50 gram bar of chocolate, for example, now serves as three separate snacks.

But perhaps the most unexpected benefit that has come with having no stomach is that I feel great.

I went to the driving range today, worried that my incision site might not dig all of the turning and exertion that goes along with swinging a golf club a few hundred times. Even pre-surgery an extended trip to the range would leave me sweaty, sore, and a bit exhausted.

Surprisingly, I breezed through a couple of large buckets of balls with nary a break. Better still, I felt like I could have kept right on going had my wife and daughter not arrived to pick me up.

I’m going to chalk up my new physical stamina to two things: The weight I’ve lost and my post-op diet, which is a far cry healthier than my pre-op menu. Simply put, it’s the result of eating better.

So, basically, I’m feeling really good these days. Or at least better than I did prior to surgery.

I do, however, feel a bit bad for total gastrectomy patients who spent their lives treating their bodies as temples before their surgery. They don’t have any post-op benefits to look forward to.

What’s more, they’ve lost out on their big chance to let themselves go. They’ll never know the satisfaction of, say, trying to finish off one of the Bishop and Belcher’s Big Belch appetizer platters—which consists of six cheese sticks, ten hot wings, eight chicken fingers, five potato skins, three slices of cheese toast, a basket of onion rings, and a huge serving of fries—all by themselves.

I may never again be able to have a go at the Big Belch, but I’ll always have the memory of that one fateful evening that I gave it my best—and the night spent sleeping on the bathroom floor that followed.

Had a CT (CAT) scan last night. My first ever. I liked being around such expensive technology; it made me feel like I was in the future. But the preparation was a bit of an issue. The technician had me drink half a litre of barium solution. Needless to say, it’s difficult for me to drink half a litre of anything, let alone a thick, tasteless milky substance. Still, I managed to do it over the course of about half an hour.

The reason for the scan was to establish a baseline for my cancer-free torso. I’ll be the recipient of some sort of upper-body diagnostics annually from now on, and they’ll compare what they see in future images to this initial one. That way they won’t jump the gun on any suspicious looking spots that are benign or simply a natural part of my anatomy.

More interesting than the scan, though, was news I received on Saturday from a fellow total gastrectomy patient I’ve been in touch with who has been suffering oesophageal problems very similar to mine. He had an endoscopy last week, and his doctors determined that he had a stricture; a narrowing (due to excessive scar tissue) of the oesophagus at the point it joins with the intestine. Most people have a gap of two- to three-centimetres all the way down their throat, but his had been reduced to just 9 millimetres at the scarring point.

What’s more, they were able to take immediate action to rectify the issue. They slid a balloon down the scope and inflated it to three atmospheres of pressure at the stricture point, which effectively tore the scar tissue apart to widen the gap. He went home that day. At the time he wrote me, two days later, he hadn’t experienced any more of his throat issues, despite having eaten a couple of sizable meals.

The last time I saw my doctors, they suggested that I might have a stricture as well, and said that if I did that the balloon trick could solve my problem. I’m not scheduled to see them again until July, but in light of this news I might try to bump that up a bit. If I could conquer this one last problem I’d feel like my life would be pretty much back to normal. Here’s hoping.

I was searching for something to write about this weekend, and then I read a comment posted beneath my last entry by someone about to go through her total gastrectomy. It moved me. So, instead of writing about how I’m feeling this week (same old, same old), I’m going to respond to her comment.

Cindy, I'm happy to have been of some help. I know how scary this can be. The good news: Two months post-op (to the day, actually) I feel like my life is pretty much back to normal. Certainly, my eating schedule seems bizarre to most, and I'm still suffering the weird throat bubble/goo thing I’ve written about previously (as well as infrequent bouts of nausea) but I'm learning to cope. I'm still doing all the things I love—save gorging on burgers and chips—and I feel about as healthy as I ever have, thanks in part to my healthier diet.

If I may make one suggestion: Record your experience. Even if it's just a private journal. Then, whenever you feel like you're having a bad day, go back and read your earlier entries. You'll realize a couple of very important things.

First, you’ll see that despite how you feel now it’s probably better than you felt a couple of weeks ago. This goes both for the pain associated with recovery and the symptoms that go along with having no stomach. Those symptoms may persist, but they’ll either get better with time or become something that you learn to deal with and incorporate into your routine.

Second, and perhaps more importantly, you'll come to understand how strong you were for having made it through such a trying ordeal. This is one of those things that most people can relate to only through movies and television. It’s awful to have to go through it yourself, but once you do you’ll realize you have a strength that most people never discover. Trust me on this. I speak from experience.

One other thing: Don't assume that everything that happened to me in the hospital and after will happen to you. One thing I've learned from corresponding with others who have gone through this is that everyone's total gastrectomy experience is different. I’ve done pretty well, but I know of one woman—one of the founders of BeStrongHearted, actually—who is almost completely back to normal less than a year post-surgery. She wrote in her blog last fall that she can eat a Lean Cuisine meal in about 15 minutes (lucky her—it takes me about an hour) and that she almost never suffers nausea caused by dumping syndrome.

And, of course, should you ever need someone to talk to, feel free to contact me, either through a comment on this blog or, if you prefer something less public, via email (I can be reached at chadsapieha@yahoo.ca).

Good luck with your surgery. You’re lucky; it’s early enough in the year that you’ll still be able to get out and enjoy the majority of the summer. Personally, I’m looking forward to a little golf. J

Life is officially back to normal. Or at least as normal as it’s ever likely to be again. I’m working, the wife is working, the kid is in school, we’re looking forward to birthdays, a ballet recital, and a summer filled with the riding of bikes, the flying of kites, and the sliding of water...err...slides.

Eating is something of a chore, as I suspect it always will be. I have small servings of chow nearby at all times, and my smallish meals—consisting, for example, of a single slice of pizza, or a quartet of perogies, or a small bento box of sushi—still take forever, but we’re all slowly growing accustomed to and making the best of it.

At dinner, Kristy eats her supper then stays at the table a bit longer, busying herself with things like party invitations and paperwork for Scarlett’s next year of school while I slowly plough away on my meal. She's a keeper. And Scarlett’s a pretty slow eater anyway. She likes to take intermissions during her meal, hopping off her chair and doing little dances, or escaping to her bedroom to find and bring back a doll that she sets up to watch her finish her meal.

As for me, I picked up a heated serving tray a week ago. It’s a flat, featureless stainless steel bed about 30 centimetres long and 60 centimetres wide. Plug it in for six minutes and then pop out the cord and its element slowly releases stored energy to keep it hot for the next hour.

I put my plate on it to keep my food warm, and it works like a charm. Bit of a godsend, actually. Taking 80 minutes to eat a small portion of rice and curried shrimp is bad enough; eating the majority of it at room temperature can be almost unbearable.

Not much else to report this week. Had a few episodes of nausea caused by dumping syndrome, but that seems to be subsiding as I learn the sort of foods that set it off and the quantities required. The bubble-in-my-throat thing that I’ve mentioned before (and which people who still have their stomachs likely won’t be able to fathom) is still happening, but it seems to be resolving itself more quickly.

That said, I experienced it while out in public for the first time yesterday, and it was kind of awful. We were at a mall, and I had to hurry back to the privacy of our car, where I spent a few minutes spitting out what a fellow total gastrectomy patient I’ve been in contact with refers to as “goo”—a thick but clear saliva-ish substance that builds up suddenly and at random after a couple of bites of food. (It’s worth mentioning that I’ve never been a spitter; it grosses me out each time I have to do it.)

Needless to say, I’m happy my job allows me to spend most of my time at home. I can’t imagine having to deal with the goo and the spitting and the impulse to gag that goes along with it while in an office environment.

Anyway, that’s it for this week. Life goes on, and, as another total gastrectomy patient once told me, life is still good.  

Measuring time isn't something a person--or at least this person--thinks about often. Time flies, I know that, but I'm usually too busy to reflect upon it except in occasional spurts. But for the past 51 days, I actually have had time to think, time to play and time to reflect as I've taken seven weeks off work to help Chad and Scarlett get through this period of our lives. In the musical Rent the characters sing about how to measure a year (and go on about sunsets and cups of coffee). Here's how I've measured the past seven weeks:

Love. Tears. Hugs. Promises. Family. Friends. A stiff upper lip. Worry. Thankfulness. Exhaustion. Snuggles. Surgery. Mount Sinai Hospital. Close to 2,000 km driving around the city. Costco. Drop off and pick up at nursery school. Playdates. Cleaning sutures. Cooking three meals for three people. The Science Centre. Library books. Laughter. Twitter. Snowpants. Rainboots. Sunglasses. Posterous. Be Strong Hearted. The Wire. Breaking Bad. Corner Gas. 30 Rock. Damages. Riverdale Farm. Crafts. Connections. Nine tumours. The park. The zoo. Birthday parties. Lunching with ladies. Bedtime stories. Morning smoothies. Disney on Ice. Dot to dots. Facebook. Farmers Markets. Giggles. Baby Jamie. Mom. Kandis. Amelia. But most of all, Scarlett and Chad.

I told Chad today that the last seven weeks have been the best of my life, and I meant it. While I may not have spent my sabbatical on a beach or on a European vacation, my husband dodged nine (NINE!) tumours and I got the opportunity to be the best wife and mom I could be 24 hours a day. As I go back to work tomorrow I know I'm going to miss these comfortable days, but I know that I'll hold onto the feeling I have right now: that I've got a life that I love, a husband that I'm crazy about and a daughter that fills me with joy every minute of the day. Who could ask for anything more?

kp

I met with my doctors today for the first time since being released 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 signet ring cancerous tumours. Nine of them, to be precise. Nine.

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

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

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

Indeed, even my doctor said that she would be using my case as an example. When I mentioned to her that I thought she already had, given that 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 at these things; I explained that our friend guessed it was me based on the patient’s age, the timing, and the rarity of CDH1 cases.) I told her to go ahead and show my case to anyone who wanted to see it.

The long and the short of this post is that everyone is happy. My physicians are happy that they have done a good job, my genetic counsellor 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 physical issues resultant from my total gastrectomy.

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

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

Lots of other little things came up over the course of the afternoon (my incision is apparently healing well, my minor but continuing weight loss is no cause for alarm, 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 professionals attending me at Toronto’s Mount Sinai hospital and the wonder of modern medicine, my life has been extended.

Oh…and I’ll soon have some awesome photos of my stomach that I’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 genetic counsellor, 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.

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

First the good news: Both went down pretty smoothly—especially the wine. Sipping drinks is my forte these days, so slowly working away at 225 millilitres 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 my food into a liquid-like mush, which resulted in the now familiar feeling of something being stuck in my throat. It lasted for about half an hour, during which time I was unable to eat anything else. I’m sure the smaller bites/slower eating thing will eventually become a matter of habit, but I don’t know that I’ll ever get used to the idea that a six-inch sub requires a 90-minute investment.

Still, I have to admit that the sandwich tasted good and that the 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 she mentioned that people who have surgeries that involve the removal of all or most of the stomach are often more prone to alcoholism than the rest of the population.

I’ve never been a big drinker—prior to surgery I typically had only a couple of drinks per month—but alcoholism runs in my family. What’s more, as I told Kristy this evening, sipping that glass of wine was the closest I’ve felt to eating or drinking anything in a normal, natural manner since my surgery. I’m already looking forward to having another glass sometime in the near 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 the time and she monitors what I ingest like a hawk. Besides which, she’s no complacent 50s-era housewife; she’d kick my butt into next week if she ever thought I was becoming a sot. It's nice to have someone who cares about you. :)

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.