Normal is as normal does

Life is officially back to normal. Or at least as normal asit’s ever likely to be again. I’m working, the wife is working, the kid is inschool, we’re looking forward to birthdays, a ballet recital, and a summer filledwith the riding of bikes, the flying of kites, and the sliding ofwater…err…slides.

Eating is something of a chore, as I suspect it always willbe. 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 smallbento box of sushi—still take forever, but we’re all slowly growing accustomedto 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 paperworkfor Scarlett’s next year of school while I slowly plough away on my meal. She’s a keeper. And Scarlett’sa 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 tofind 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’sa flat, featureless stainless steel bed about 30 centimetres long and 60centimetres wide. Plug it in for six minutes and then pop out the cord and its elementslowly 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 likea charm. Bit of a godsend, actually. Taking 80 minutes to eat a small portionof rice and curried shrimp is bad enough; eating the majority of it at roomtemperature can be almost unbearable.

Not much else to report this week. Had a few episodes ofnausea caused by dumping syndrome, but that seems to be subsiding as I learnthe sort of foods that set it off and the quantities required. Thebubble-in-my-throat thing that I’ve mentioned before (and which people whostill 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 thefirst time yesterday, and it was kind of awful. We were at a mall, and I had tohurry back to the privacy of our car, where I spent a few minutes spitting outwhat a fellow total gastrectomy patient I’ve been in contact with refers to as “goo”—athick but clear saliva-ish substance that builds up suddenly and at random aftera 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 ofmy time at home. I can’t imagine having to deal with the goo and the spittingand 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, asanother total gastrectomy patient once told me, life is still good.  

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Measuring time

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

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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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