Yuletide Greetings

I really love Christmastime. I always have. Tonight we had a little soirée at my mom's. My sister and her boyfriend came up from Atlanta and are actually flying back on Christmas Day, so in order to celebrate with as many relatives as possible, this "Solstice" night was chosen to get folks together. It helped that there was a fire. And some booze. And a nephew who works part time at Honey Baked Ham and gets a discount.

JJ remarked that it was the best-attended gathering (though some were missing, and very missed, but no guilt intended as there are always problems with work and living a thousand miles away and whatnot) in a long time. He suggested that maybe we should always plan for our seasonal celebration of this time to be on this day as opposed to the the 24th and 25th when there are so many other obligations to be met. Maybe this will be a tradition that carries forward.

I was pleased to send out Cards this year, as last year it just didn't get done. And by cards I mean those photos of my kids that get sent out to all kinds of people that I may never speak to even once throughout the year. But that is the whole purpose of this post.

I remember growing up and being excited to open the cards that came in the mail. I just wanted to see the cards themselves. Was is Santa and the Elves? Was it a charming Manger scene? Didn't matter; I loved the cards. Sometimes they came with the letter of what the family had been up to. These I was never interested in as child. Even growing into adulthood, they've made me kinda iffy. One one hand, I never understood why a distant friend or relative would feel compelled to give the rundown of everything that has happened in the lives of the family for the previous year. On the other hand, yes, I can understand. And now I think I like these yearly updates!

As a, shall we say, younger person, my attitude was that if we cared enough about each other, we would communicate more frequently than a "Sally got an A in Math and Johnny made Varsity Football" letter once per annum. But now I know better. Now I understand. Now I believe I'm on the verge of writing such letters. And what's worse is I see how they matter.

Even now with the Internet and the Facebook and every other thing there is out there, I'm happy with the fact I sent out Christmas Pictures of my Kids. This year, I almost succumbed to the This-is-What-Has-Happened-The-Past-Year Letter. But, honestly, I didn't want to have to buy more ink for my printer. WIN! I've chosen to write one. And you can read it here below, later, should you chose.

I decided that for me, it is important to get those yearly greetings. It may be a simple sliver of connectedness. But it is connectedness nonetheless. I've had friends who have told me that they are at a loss as to what to do with the Christmas pics. One is a new father so we'll see what he chooses to do. Another admittedly trashes them, so she sometimes doesn't get one. About ten years ago I came up with the solution. I make collages of all the photos and we love to see to see how the young ones grow.




In sending out these Yuletide greetings I always feel a slight pinge of remorse. For not including a personal note, for not keeping up to date in a more personal and prompt way. But then I realize that it's the wonder of this this crazy cyberspace. No it's not great as seeing an old friend and not the same as a hug and a genuine wish for well. But it is something, now, ain't it?

No matter what your inclination, towards the holiday, your family, et cetera, as long as it's known that you love others and others love you, I think that's what this is all about.

Keep the peace. Wait. No. Don't keep it! Amplify it and send it out. I think this may be my Christmaspost. PEACE!

Friends and Family Near and Far:
This year has been quite a doozy. Had record snowfall and despite the fact that Dan has been plowing on and off the past few years, this wasn't one of them. I've spent the better part of the last fifteen years working at this bar and restaurant that suddenly locked it's doors one day. Aw shucks. For what it's worth, we kinda knew it was coming, but expected a bit more than, "Don't bother coming to work on Monday."
Thankfully, Dan is doing well with his new business, so we hope to get through this economic downturn.

In March I had an endoscopy to check for stomach cancer cause there's this genetic thing. So a week later I got a phone call call from the GI doc telling me he found cancer in my stomach and I need to schedule appointments with an oncologist and surgeon.
I am a stoic and a pro. In fact, I think I may be a professional stoic. So going into this I was very low key. The fact is my family has been dealing with this for many years. It's almost like, "Oh, another one of you, eh?" So I had my stomach surgically removed from my body in July of this year. Thanks for that because it didn't spread or anything and I didn't need chemo or the other nonsense. In fact I recuperated so well that I was able to accompany my mom when she drove out to the Midwest. Or at least I thought so.

Dan is still working hard building his business. While he's not ready to incorporate and hire a team of employees, he's making a respectable living, which is more than I can say for myself. He plans on plowing again this year, so let's hope for a lot of snow!

The kids are both in middle school now and doing well. Janelle is still somewhat active is sports and considering trying some theatre work. Sean spends too much time playing PS3, contemplating his genius and will need to find some new hobbies in the near future.

The dogs are cute but a bit of a pain and are always considered free to a good home.

"Merry Christmas to All. And to all a Good night!"

Bah Humbug ... Or not.

I'm deeply saddened by the realization that my Christmas Cookie Baking days may be behind me. Those who don't bake simply may not realize the amount of physical strength and energy that goes into hand-mixing the dough or the most tiring, rolling it out after it's been chilling in the fridge for twelve hours. I certainly never knew how physically demanding it is until this year. And I just don't seem to be able to do it. Halfway through a single batch of sugar cookies I felt I needed a nap. Not only that, I was certain that I would develop a hernia; which is actually quite likely, from what I understand, for at least a year or two post surgery.

Usually my cookie baking takes three days to complete. Not the entirety of those days; I've just found it easier to break up the jobs. Day one I make dough and then it goes into the fridge to chill, day two I spend rolling, pressing, shaping and baking. And then the third day is when all the decorating happens. This is the magical day they all become special. This year it took longer than that.

My personal favorite are what we call "Bell cookies" because they are in the shape of a bell. The cookie itself is chocolate mocha, just the slightiest hint of coffee flavor. They are actually a sandwich cookie with mint icing in the middle. Oreos? Pffft, how PLAIN! Finally I drizzle melted chocolate on top. These are a huge hit with many. You may even remember having had the opportunity to enjoy one of these at Christmas time because I would always bring a tray into work. Well, lucky you may have been, because I don't think I'll be able to make them anymore. I'm absolutely exhausted!

Before anyone tries to sell me on all the prepackaged dough items in the dairy section of the supermarket, save it. Now I don't want to disparage those who use them, but I'm a purist. I don't make pie with pre-made crust, and I certainly won't use the break-off-the-squares-and-bake dough. What's the point? It's not really homemade, so don't fool yourself. If I don't want to go through the trouble of making cookies, I'll just buy them pre made and I will be proud of it. None of this hiding behind, "Well I turned my oven on so technically--" No! That doesn't make them homemade. Sorry. Nice try though.

I guess I should be handing this tradition down to my kids. My son, of course, is like his father in that his only interest in cookie baking lies in the eating of them when they are, and often before they are even, finished. My daughter certainly expresses an interest in learning and helping but it isn't long before something shiny or it's audible equivalent beckons her away from the kitchen.

I suppose now after thinking this through, it's not that I can never again make cookies. It's just that I can't make my favorite ones. I'm going to have to find some new recipes that aren't as physically demanding as the ones I'm accustomed to making. I'll have to repurpose my rolling pins as well, hang them up as decoration or something. It seems to fall nicely into my overall new life theme of adapting. For so long I've been trying to mould the world around my will. But I now realize the need to bend a bit to the will of the universe. I'll just have to create new favorites that are more in step with my current capabilities.

And don't even get me started on the dog taking a mouthful of cooling cookies thereby sending the remains of an entire two dozen to the trash for fear his mouth somehow came in contact with them. While it would be nice to have animals that are trained not to do such things, it would be even nicer to have a kitchen that's properly equipped for such tasks as baking cookies or even making toast for that matter. The fact is, the dog is bigger than my kitchen. Anywhere within it that you put a rack of cookies to cool will pretty much be right in the face of a 125 pound dog.

On the upside, my sugar cookie icing turned out nicely this year which made for a better-looking cookie. In the past, the icing would be runny and drip over the edges. Not this time. They are Martha Stewart perfect. Ok, Martha Stewart lite perfect.

Let it be known thatI am still not finished. I have one more batch of dough to mix, bake and decorate. These are the Mirro press cookies of my childhood. Literally, I stole my mom's cookie press since she doesn't use it anymore. I've actually been using it on and off for years. But I remember that the last time tried to use it, the dough was oozing out from the edges. No matter. I am resolute in my endeavor and will beat the cookies into submission.

Awwwwww, My First Cold Since Surgery

That's so cute! Well I'm surprised it took so long, truth be told. I usually get one right around the sumer into fall change of seasons. But I only recently had my first occurrence of the common cold. I was worried that my usual methods of dealing with this nuisance would be hindered by not having a stomach but it wasn't so much the case. I'm not one to swallow fistfulls of pills or chug various other chemical symptom alleviators. Instead I opt for ingesting copious amounts of raw garlic, pineapple juice, soup (man, I LOVE soup!), and an odd assortment of herbal teas. This was a problem only because my intake of all of the above was held back by the whole "eat a little, drink a little" routine to which I'm now a slave.

I got through it well enough. Had to adapt some things, like put the two cloves of chopped raw garlic on one piece of toast rather than spread upon two. Ouch. That hurt. And I had to forgo the herbal tea I usually drink to help with the coughing that often marks the end of the illness. A warning on the box said not to use it "if you have inflammatory disorders of the GI tract and biliary ducts..." Now, I don't have any disorders, per se, but the fact that I'm missing a major component of the GI tract, and gastrectomy patients are known to have gall bladder issues, to the point that many surgeons recommend yanking it out while they're in there removing the stomach anyway, tells me I should wait until I'm able to talk to my doctor or others who have good recommendations, before proceeding with this folk remedy.

To prevent a digression into the many viscosities and hues of mucus, I'll end this now. Especially since I just took a few too many spoonfuls of homemade Dulce de leche (caramel) and am awaiting at least a mild case of Dumping Syndrome. Probable not a much better image than that of mucus. Sorry.

Overindulgence (Almost) Controlled

Reading this article got me to thinking about all the customary consumption of food and drink that surrounds the holiday season and I'm wondering how I'll cope with the temptation. I've already had a few incidents. The first involved Grand Marnier on the evening before Thanksgiving. Listen, it's not my fault most bartenders don't know how to properly pour into a sniffer, and I'll admit there was a time I would relish at the sight of one being filled halfway, but this time, no. I had earlier found a wonderful bottle of what I can best describe as Gingersnap liqueur made by the fine folks down at Art in the Age in Philly. Because of issues with soda I just drank it over ice with a little water mixed in. After having enjoyed my fair share, perhaps a little more, of the Snap, there was really no reason to stop for a nightcap of cognac. But I did anyway.

I've only overdone it with alcohol once since my surgery and it was lesson enough for a while, I would have thought anyway. When I was in Wisconsin at my sister's house she decided to have a bourbon tasting. Now tastings can be somewhat civilized events using only small amounts of each kind. Even the word "tasting" conjures an image of spittoons lying around because one isn't supposed to actually ingest the concoction being tasted. Uh, okay. Now I'm not such a big fan of bourbon, in fact I hate it. But that night back in Milwaukee I had discovered American Honey which is Wild Turkey mixed with honey. This I liked. Apparently a lot, as I woke up the next morning in a daze, the only thought in my head that I had to be at O'Hare to get through security by about 1:30pm.

After having that one too many last Wednesday it's needless to say I was useless on Thanksgiving. I cut some Brussels sprouts in half and maybe some carrots or something but that was it. I did manage to hurt myself later, this time with the cranberries. My sister made this cranberry, pear and ginger sauce that was so tasty and delicious. You can't even call it sauce really because it's chunks of the fruits and fresh ginger. I can't fathom eating that gelatinous mould that comes out of a can. Gross. The only problem is that the sugar content was kind of high, so by eating too much I set myself up for some fairly Ill feelings after our meal.

This overexposure to things of which I can only partake of in minuscule doses actually started around Halloween. The kids got more candy than usual after hitting extra houses in the neighborhood next to the one we usually go to. In addition, I had bought a bunch of candy the week before, even though we have never gotten trick or treaters at our house, even the years one of us is home. The Reece's Peanut Butter Cups and Kit Kats went quickly and the plain Hershey Bars slowly faded from the bowl. Now I'm stuck with a bunch of Whoppers because no one in the family aside from myself likes them and I'm unable to eat seventeen of them in one sitting So there it sits; a green plastic bowl adorned with an orange stripe and black pumpkins filled with little packets of Whoppers is cluttering my table currently festooned with a green tablecloth, red place mats and a Santa Claus tray. A big bowl of candy I can't tear into is my own personal Nightmare before Christmas!

These are all lessons learned I hope. Saturday was an informal general all class reunion for my high school. I ate leftovers before going out and made sure not to overdo the cranberries which was difficult because they are so darned good! I managed to have a second glass of wine at the reunion even though it took over an hour to drink the first one. And since it was a casual event without prepaid dinners or buffet, I did not feel compelled to eat, so just ate a little snack back at my mom's before going home.

I suppose it's easier to not give in to tempting treats when I know they'll make me sick. It makes me not want to bake any of them though, and I know my kids will be upset if they miss out on any of my traditional Christmas cookies. I'll just have to pick up some new traditions that aren't so heavily centered around Sugar! I'm accustomed to taste testing at least a few cookies for each type when I'm baking, you know, for quality control. Maybe I'll let the elves do it for me from now on.

I know everyone else has trouble with extra calories and expanding waistlines this time of year. (I used to be one of them). So I'm sure I'll get no sympathy from anyone in my daily struggle to take in adequate calories and nutrition just to maintain. December is upon us, Happy Hanukkha (early this year!) and Merry Christmas (though I hope to post before then).

The Lost Post

I came across an entry in one of my writing apps. It was from the morning of my surgery but I wasn't able to post because I couldn't get the iPad hooked up to the hospital's wifi. So I thought I would post it here and offer a bit of reflection upon that day as I have just passed the four month post-surgical mark.

I'll be checking in to the hospital at 10am. Correction: I should be. However, due to a few stops before getting on the turnpike and the traffic we're currently stuck in, our ETA is in question. It will be a few hours before I'm actually in surgery so I figure somewhere around lunch time is when it will start.

When I woke up this morning, my head started going through all the coulda-shouldas. You know, coulda done a lot more yoga the last few weeks as it will be some time before I can resume that activity. Shoulda made a song mix to see if doc would play it during the operation. (I imagine they like it quiet in there, but who knows, maybe my surgeon likes to work listening to music with the volume turned up to 11. And there's just something really cool about imagining Lateralus playing while I'm having my stomach cut out of my abdomen).

I had a craving last night for lobster and crab legs. So we ended up going to Red Lobster, of all places, for dinner. Some of you may not be aware of my utter disdain for huge, corporate-owned chain restaurants. But this fit the bill at the time. I had quite a little feast and it was decent for my last full meal for a while.

I haven't had my panic attack yet. I'm starting to wonder if it will ever happen. It should, right? I mean, there's something abnormal about not having a complete and total mental breakdown at some point prior to having a major organ removed from the body. I can't help feeling that the longer my psyche waits to crack, the more heinous and horrific the episode will be.

Oh well, it's time. We're almost there. Thank you all for everything. See you on the other side of this ...

I thought I would remember every single minute of that morning. But it turns out that my brain's random selectivity in recalling stored memory of that day is no different than it is for any other. Dan and I drove down and were met by my mom and niece shortly after I checked in. I had been drinking coffee and realized that I had done the math wrong and wasn't supposed to be drinking anything, even water, at the time I was slugging down some Wawa Java. Ooopps!

I recall a few different waiting rooms and actually experiencing the beginning stages of my long-awaited psychological freak-out. But it turned out I had to answer questions or something and forced myself to hold it together. I finally got my dress and bracelet; hospital-gown couture is not haute. Once we got to that part I had to say goodbye to Dan, Mom and Rachel. They walked with me in the hallway. Here is where some poignant words may have been exchanged, where a future legendary quote may have been uttered; but if it was, I don't remember.

I found myself on the gurney in a buzzing room full of pre-operative patients such as myself. Several people stopped to ask me questions. What is my name? Why am I here? Or stick me with needles. Or ask if I had any questions. I thought about the iPod thing again, but I hadn't finished creating a proper playlist and didn't know if it had enough of a charge. Incidentally, I found out later that my surgeon would have played whatever music I wanted, so I'm content knowing that it could have happened.

Someone came and put on leads for the heart monitor. Someone else set up a PICC line. (When I woke up post-op there were no less than six additional tubes/wires coming out from or going into my body). I recall a key conversation with the anesthesiologist where we talked about NOT having an epidural. He told me that it would be needed if I was having a standard "open" surgery, but since it was being done laproscopically, I wouldn't need one. I concurred as I figured that it would be one less thing that could go wrong, but made sure he was aware that they were set up to go in the standard "open" way if necessary. He just said they would cross that bridge if they came to it.

Big. Fat. Mistake. I'm the only one who crossed the bridge, and it was misery! As I've detailed in earlier posts, they did end up having to make a big incision to properly reconnect my new alimentary canal. It wasn't until weeks after my surgery that I realized that the lack of having an epidural greatly contributed to the state of constant discomfort the first four or five days after surgery.

As the nurses wheeled me into the OR, I commented that it all just wasn't nearly as glamourous as it looks on TV. Not long after that, I was out. The next thing I knew, some people I don't know where calling my name and telling me I had to scoot over from the gurney to my bed. This did not make me happy. It got worse when the bed I was in didn't incline and they had to bring another one in. I got to do it again.

Well the rest is ... not just history, but mostly documented in previous posts. So I'll refrain from a rehashing of the events of those early days. It's amazing to look back at the state I was in and see how far I've come. Four months is a decent landmark of sorts so I'm pleased to be here. I have quite a road ahead of me but it's a well worn path with many guides along the way to help when I stumble and pick me up when I fall.

Needle and the Damage Overcome

I just had Dan give me my B12 shot. I prepped the needle and he stuck it in the back of my arm. I've been really nervous about this. Last month I had a nearby nursing friend do it for me but Dan wasn't around for a tutorial at the time. I put in a call to her again but decided I just couldn't wait until she was able to come for a house call. So what's the next best thing if you can't learn how to do a routine but potentially problematic procedure from an actual medical professional? You Tube of course!

I watched a few videos and it was kind of amazing that I was able to view the needle going in the skin. This ALWAYS skeeves me out; I even turn my head when I watch medical shows and someone is getting jabbed with a needle. It's really one of the only things that ever stood between me and medical school. (That and the all the darn TIME it takes to get through it)!

After watching a few of these, I realized that none of them were going through the steps of getting the liquid into the syringe. That was to be my job and I remembered something about displacing the liquid with air in the bottle or something like that blah blah blah. But this is the important stuff, getting the syringe ready. I finally found a video that covered all that and I wrote down all the steps.

Then I said to Dan, "If you watch a video, do you think you can do this?"
"This?" He said, pointing to the television showing a program about making whiskey.
"No. No. Giving me my shot."
"Oh, sure.Yeah, no problem."

Turned out to be easier and less stressful than I thought. I'm starting to think that I'll someday be able to do it all by myself; as soon as I get over the ickyness of it. And I might need that to happen sooner rather than later because I think I need to be getting this more frequently that once a month.

I've read about many people who would get them once a week for the first six months after surgery and then taper off to once a month. I just get so darn tired; I slept most of the day for the past two days. I'm disoriented and irritable. It's no fun to be near me. It's no fun to BE me when I'm like that.

There's no doubt I'm vitamin deficient. My skin is terribly dry. My hair is falling out in clumps. My brain functions are skewed. I realized that it's not even a matter of ingestion, it's a matter of absorption. I wasn't even thinking of the fact that I'm not getting as much of the nutrients out of my food as say, a person with a stomach to break down all that food matter. Even supplementing doesn't ensure that I'm absorbing the vitamins. So I've started to take my supplements with every meal, as opposed to just once per day. When I remember anyway.

So I hope this shot gives me some energy back and if I find myself dragging after three weeks, I'll go ahead and take another, right? Especially now as I'm still in the first months after surgery. Maybe I'll even find the nerve to give it myself, without assistance. If I can do that then maybe the MCAT isn't too far behind!

Terrible Correspondent

And I swore I would not be one of those blog people who start to taper off in posting. No, no! I will write new updates at least once per week, maybe more, if my mind allows. I've read other blogs in earnest only to discover the posts becoming fewer and farther between with maybe a six month post and then not another one until the obligatory "One Year Post Op" write up. Usually around then the blogger will note that the blog had run its course and no longer serves the purpose for which it was started. Right about now is where I might say the same and offer a conciliatory goodbye, thanks for reading, I'm done with this now. But I'm not going to let you off that easy. I'm going to make you read more.

The three month mark came and went as I was both winding down from my flyover state driving tour with mom and briefly lamenting the fact that after the recent birthday I've become very technically "In my Forties," as opposed to being simply 40. There is a difference.

From time to time I bump into someone I haven't seen or talked to in several months and they kind of do a double take and ask "Um ... How ARE you?" My standard response is that I'm doing very well, considering my current physical state. I've struggled recently with the whole notion of the concept of "recovery" because one does not recover from this surgery, one adapts. Recovery implies a return to the prior state of being and that just isn't going to happen for me. This is the "New Normal" I often refer to.

I feel terrible after eating, pretty much all the time. I can't really call it nausea because to me, nausea is a feeling of wanting or needing to vomit. I don't feel that. The feeling I get is not quite pain, not quite bloating. It's just this persistent all encompassing yuk-ness that has no other name. I still think I'm eating too much at any given time. Probably a combination of my being paranoid about not getting enough nutrients and not paying attention to how much I am eating.

I haven't developed much of a routine because my day is not structured the same as it would be if I say, had a full time job that offered good benefits and opportunity for advancement. So I'm wary of establishing said routine for fear that some kind of life change will affect it adversely, thus throwing my system and health out of whack. (At least that's what I keep telling myself as I procrastinate on the whole eating routine thing while I look for a job). Plus it's so darn hard! Never in a million years would I have thought that properly eating and drinking throughout the course of the day would actually be work.

I've started to have some pain around the incision. I didn't feel anything for the longest time; it was completely numb around the scar for months. The incision itself has healed well and properly but I guess now that the nerves are reconstructing themselves, they're kind of saying, "Heyyyyy, what happened? Ouch! I think we were severed! That's supposed to HURT! What the . . . " So now they're sending pain messages to the brain. Little late my dendrites, little late.

Now that things have settled down, I hope to write a little more to keep everyone up to date on my recovery adaptability!

Newly Remodeled Website

The folks over at No Stomach for Cancer (formerly Be Strong Hearted) have been kind enough to feature my blog as one of the many Personal Stories on the Community section of the website. If figured that I should plug them here as that site has been an invaluable resource for me both prior to and during recovey from surgery.

They've just revamped the site and made it more navigable and user friendly. At the same time they have awesome news. November has been designated as Stomach Cancer Awareness Month thanks to a few senators from the Midwest. Oddly enough they represent two states (Wisconsin and Illinios) in which I have recently been sojourning. Now, I don't want to say that my mere presence out there has some kind of mystical influence over this turn of events. It doesn't mean that my personal energy is so powerfully strong that it can move even politicians to do good things. Or does it?

Yeah, I doubt it. It was mostly due to the diligent efforts of the Chelcun family and
everyone else behind the scenes at No Stomach For Cancer. Upon learning of this condition and it's rude interjection into the lives of their family, they immediately sprung into action and began in their advocacy for people living with CDH1 and HDGC. Their efforts have been monumental and their hard work is reflected in the new site. Stop by and get informed, and I dunno-maybe hit the red "donate" button if you have a few dollars that you don't know what to do with.

No Stomach For Cancer

I want a big glass of Coca Cola. I haven't been dining out so much in the classical sense. I mean, we went to the breakfast buffet at the local firehouse Sunday morning and I had a few bites of a burrito at the mall a while back. But the whole sit at a table with a server waiting on you thing; haven't done much of that.

I flew back to Chicago today so that I can start to drive back to PA with my mom tomorrow. Don't ask. We're making a few stops to see people so it'll take a while. My cousin wanted to treat us to dinner and before I could even mention Morton's, I found out that Red Lobster would be the restaurant of choice. Usually I have a rule about eating seafood so far away from the actual sea. But it's Red Lobster, right? It's not like I'm getting tuna tartare or raw oysters or anything like that.

Aside from intentionally ordering way more than I could eat (after dismissing my first thought to order a cup of soup and an appetizer as my entree), I spent a lot of time watching the servers carry trays with icy cold glasses to other tables. Glasses containing a dark syrupy liquid with a riot of effervescent bubbles clinging to their sides. I really wanted a Coke. Or a Dr. Pepper, which is odd as I remember a similar tasting soft drink called Mr. Pibb being the brand of choice in these parts. No, never mind, just a Coke.

I started obsessing about it. Like I could almost taste it, but not quite and I just needed a little nip to remember that taste. I looked at my watered-down raspberry lemonade and then at all the other tables. Look at them, I thought. Just look at all of them with their sodas, happily slurping through straws, asking the waitress for refills! I recalled being able to sip such a beverage and thoroughly enjoying, but not appreciating, the flavor and thirst quenchiness! Sometimes I would chug some right out of the bottle. Sometimes I would even mix in a little rum believe it or not!

I never even really drank a lot of soda anyway and in our house it is considered a treat more than it is a staple. Maybe it's just the idea of wanting something you can't have. Or perhaps it was just the feeling of wanting something that wasn't watered down, as is the only way i can tolerate the beverages I'm able to consume. Or even an urge to drink anything at all while I'm eating. It's a totally natural thing to sip water with a meal, but not something I'm able to do any longer. Eating is separated from drinking by at least 30-45 minutes.

What's probably going to happen is that I will obsess about it until I just get a Coke, open it up and let it go flat. When I taste it, it will be nothing like I remembered and I'll be disappointed and wonder why I even missed it in the first place. And I'll stick to my flavored water for now, thank you!

Notes From the Road

Note: I'm on a road trip with my mother out in the Midwest. Our first destination was Clinton, Iowa where my father was born and grew up.

As we drive east toward Chicago, I'm having a sense of Mission: Unaccomplished. One of the many reasons I wanted to visit Clinton was to see the graves of my great-grandmother, Mary, and her parents. Mary died in 1910 at the age of 46, leaving behind 7 children. The family had always said she died of a tapeworm. A recent source says her death certificate lists carcinoma as the cause of death. I'm confident that this gene mutation I live with can be traced back to her. It's hard to tell from which parent Mary inherited the mutation. Maybe neither. Maybe she was patient zero and it started with her.

Mary's mother Brigdet is said to be buried in the same cemetery. She died at the age of 55 from pneumonia, according to the death record at the Clinton County Historical Society. Mary's father, Thomas, is another story. He seems to have vanished somewhere around the turn of the century. He's listed in the City Directory as late as 1896 so he lived to be at least seventy. By 1898, he's no longer listed and his son-in-law John (Mary's husband) is listed at the same address where Thomas had lived for years. It's weird. We have several bloodlines of our family tree that go back three, four, some even five centuries; but this one, with the gene mutation, this runs cold after only three generations. Damn Irish!

I'm not really sure what I was going to do upon discovering the grave markers other than snap a picture. Maybe think about getting new ones. Or "talk" to the ground where their lifeless bones were interred and say, "What is this? Where did this come from? Is there anyone I can blame?" Maybe scream and rage and curse. Or even commune with their spirits and see what they had to say about the whole situation. I dunno . . . I just thought that once I saw the graves, I would somehow feel better. But I'll never know.

I did come across some information that is neat and new to me. My dad's cousin was clearing up some discrepancies and telling some stories that she heard growing up. According to my great uncle, Mary's eldest child, the family thought she died because, "She drank the poison to kill the tapeworm, but wouldn't drink the whiskey to kill the poison." Ah, the perils of early twentieth century medicine!

I also discovered a Death Announcement from 1921 for Mary's eldest brother who lived in Oklahoma at the time. It provided the towns of residence for the other siblings at the time, in addition to the married names of the two youngest sisters. This will be of great help in attempting to track down any descendants living who may, unknown to them, be living with a ticking time bomb in their DNA.

Other than that, I actually had a blast hanging out with my dad's gang from childhood. They were and still are a crazy bunch. I guess, they too, were thrilled to see me as well. I had only met one of them before when he flew out to attend my dad's funeral. I think they all see a little bit of their beloved Jim in me. His longest running friendship was with a guy he played with as a toddler, and kept in touch with over the span of his entire lifetime. This guy said to me at one point, "It's good to see ya! You're not as good as Jim, but you're OK!"

High Praise.

The Consequence of Hubris

WARNING: this post may make reference to bodily functions and other gross stuff for which polite society would once have shunned me. While it's not nearly as detailed and graphic as it could be, some readers may find parts of this to be in poor taste. So read on at your own risk.

Something happens at about two months post-gastrectomy. The sickness once thought to be overcome returns. The feelings left behind on our march to recovery creep back into daily life, hindering progress and bringing with them the seemingly abandoned thoughts of near despair.

I saw it in the blogs of many patients like myself. I winced as I read of days on end of dumping syndrome, gagging on goo and hours of dry heaves. Determined to avoid this regression, as I call it, I simply pretended it wouldn't happen to me.

But here I am just past the two month mark and I have experienced all three of the above offenses, to varying degrees, within the past week.
The newest sensation I have had the privilege of dealing with is an esophageal spasm. This is when food gets "stuck" in the esophagus. I don't know about others, but when this happens to me, it almost seems like the muscles are moving the food back up in reverse. Not forcefully as happens when vomiting, but very slowly. And painfully.

Now the first inclination of course is to panic. As in all other situations this does no good and is actually a hindrance to the desired objective. At first I started to swallow over and over in an attempt to get the food to go down. This is what causes the food to reverse direction and it becomes extremely painful. I've found that the best course of action is to stop, close my eyes, take a deep breath and . . . just wait. Gravity seems to overrule the internal body and the episode is soon over.

The first time this happened, I was with my husband in the car driving home from the mall. I had just taken the second-to-last bite of a chicken sandwich, which by this point was mostly roll. As stated before I panicked. And kept swallowing, which only exacerbated the problem. It took a long time to subside and Dan was asking me if I wanted him to pull over. It was not a decision I was in a frame of mind to make.

A few days later I was at home thankfully, but this time, for whatever reason, the spasms were causing me to salivate uncontrollably. Not wanting to swallow my saliva (as I naturally pictured myself drowning in my own saliva with a piece of soft pretzel in my esophagus), I ran to the bathroom to spit it out. It didn't turn into the "string of frothy goo" that has become the stuff of my nightmares, but it was pretty weird all the same. It ended with some humbling dry heaves, for good measure.

I noticed that both times, these spasms were triggered by me eating something bready. Also, I had been rushed and probably not realized that I was taking too big of bites. (Remember I must take dainty forkfuls know. For I am a lady). Armed with the knowledge of the trigger and how to properly let it run it's course, I'm confident that I can get through these episodes, if not avoid them altogether. Unless the cause is a stricture at the anastomosis which is a negative thing about which we choose not to think. I'm not even providing links. So let's put that out of our minds, okay?

Dumping syndrome. Ugh. This ranges from mild nausea, cramping or dizziness to sitting-on-the-toilet-all-day detestable. The reality with this is that it's almost 100% avoidable. As long as one eats a small amount of food, takes small bites, chews thoroughly and avoids sugar, the chance of this happening is slim to none, barring other complications' which we again choose not to think about. But when you scarf down a bowl of chicken soup, then chomp a bunch of crackers with chunks of cheddar cheese and follow it up with a piece of ice cream cake the size of a brick, well, let's just say you better grab the crossword book AND the Sudoku book and you'll be wishing you had one of those somewhat creepy padded toilet seats that you never did quite understand. Until this very moment. And don't even think about getting up. Hahahaha, you think you're finished? Yeah, ok, but you won't get more than five steps before you realize just how wrong you are.

What has interested me is how this "two month phenomenon" is so prevalent among TG patients. The only answer I've come up with as that we start getting comfortable again. We start thinking our condition no longer causes us to go about our daily lives differently than we had prior to our surgery. We wake up some days and it takes a while for us to remember that we don't have our stomachs anymore. We start falling into old habits like inhaling food, shoving as much as we can in our mouths, because we are in such a rush. We are running errands and shopping. We're back in the gym and practicing yoga. We are going to work and attending parties. All of the parts our lives that were interrupted and thrown out of whack the day we checked in to the hospital for surgery, all of that is returning to normal. And we lose sight of the fact that our bodies are no longer normal. The way we both ingest and burn the fuel that our physical bodies require to function has been radically altered. We have to slow down. There is nothing normal about not having a stomach. This is the point at which we understand the need to strive for the New Normal.

I've heard of this "new normal," read about it, talked about it, known about it. Now for the first time I can feel it and it's quite humbling. On one hand, it stinks to be in the one-step-back phase after so many steps forward. But I now think about it in terms of another bridge to cross. I'm almost over it; and learning more about my new normal everyday.

My ability to stay on track and eat mindfully and intelligently (easy on the ice cream!) will be tested over the next ten days. I've decided to join my mother on part of her annual autumnal Traipsing-About-the-Midwest excursion. We'll be in and around Clinton Iowa, Chicago and Milwaukee. I will have to be smart about all the eating on the run and dining out that comes with such a nomadic existence. Especially since there's no toilet in the Hybrid! Ciao folks, I'll try to post from the road.

Seven Weeks

I saw my doctor on Monday. As in, my GP or PCP if you're in the insurance business. The family doctor, you know? Believe it or not, he actually had no idea about my surgery. So when he walked in scanning my chart and commented that I had been in the hospital and asked why, I got a somewhat horrified look after telling him I had a total gastrectomy.
"Wh-wh-whu-wut? Why? Explain."
Then I go on to describe the course of events of the last ten months in great but succinct medical detail. He was really taken aback but once I got him up to date, he just requested a copy of the Operation Report so he has an idea of the current anatomy of my abdominal cavity. I'll be honest, I was just there for some B12.

B12 is a necessary vitamin that can only be absorbed in the stomach. If, like myself, you don't happen to have one, then you have to get your supplement in liquid form delivered through a needle. I'm not a big fan of needles. And even after being hospitalized for 10 days with, oh probably at least 40 needles being stuck in me during that time, I am no more tolerant of them today as I was when I was five years old. So the issue is how to administer the monthly shot. The nurse gave me a dose there in the office and then the doctor wrote a prescription for the next year. My husband had earlier expressed an almost sinister willingness to give me the shot so if it comes down to it, I can have him do it. But I realized that I could just have my nieces or one of my several friends employed in the nursing profession give me the shot as well.

Then Tuesday I met with my surgeon again. She is pleased with my progress and says I look great. I requested a copy of the Op report for my doctor. She printed a copy for me and said she would send one along to him. It's really fascinating reading that. I wish I had just asked her to email me a copy of it so I could copy and paste it here! But I'll type up a brief excerpt because it is my favorite part:

"The plan was to perform and end-to-side esophagojejunostomy using a circular stapler, similar to the one used for bariatric surgery. Unfortunately, multiple attempts to place the anvil down the esophagus were unsuccessful. The anvil kept hanging up just distal to the cervical esophagus and despite multiple attempts and repositioning, this anvil could not be passed. Therefore, the decision was made to proceed with extending the incision and performing an open hand-sewn anastomosis."

Hahahaha remember the stapler getting stuck in my throat? There it is. It also explains why my belly looks like I lost a fight with Edward Scissorhands. No matter. I think right now, I'm doing better than I expected I would be at two months. So I'm thankful for that but also still realize that regression is always a possibility. And I can still find myself feeling really awful at times. Like when I eat Blueberry Pie too fast or put a lot of Maple Syrup on my Belgian Waffle!

The Weight of it All

I bought a scale the other day. I'm not a scale person. It's been over ten years since I owned one. Probably because I knew I was carrying a lot of extra weight and didn't want to be reminded of that fact. Who needs a scale to do what a mirror can do? Women are very sensitive about the weight they gain during pregnancy, especially when their "baby" is 12 years old.

The problem I will start having in the next few months and continuing for years, forever maybe, is that I don't want to end up losing too much weight. I know, right, it seems almost sickening. While most people struggle to shed pounds, I will have to be vigilant that I don't lose too many. Some for the first time may be finally understanding that the title "Latest Skinny" has another meaning other than news update.

My surgeon said that people lose 20-30 pounds after this surgery and any more than that would be dangerous as patients become underweight. I wanted to gently remind her that I was about 50 pounds overweight pre-surgery and I wouldn't be starting to worry unless 60 or more pounds are dropped.

At my first appointment after surgery, I was weighed and had lost 18 pounds in three weeks. That's not too bad. And for right now I'm hovering in that same spot, which is good. Too rapid of weight loss brings a host of other medical complications with it that I would like no part of. I've been told that the most rapid loss won't occur until a few months in. I'm unclear as to why this is and have been meaning to study up on it. My best guess is that at first the body will hoard the fat and compensate for the lack of calories and nutrients being ingested by simply making the body very tired and unable to get out of bed, especially when there's a "Top Chef" marathon on TV. But then after a while it just gives up and realizes that nothing is going to change so it had better start burning off the stored fuel in order to keep functioning. But that's just a guess. Some of my nurse or medical professional friends may be able to refute or deny this.

The other side of the equation is exercise. I had been dabbling in yoga for several years but had never maintained a regular practice. Even still I had somewhat of a routine of a few stretches I would do before getting out of bed most days. I realized one recent morning that I haven't been doing them and my hamstrings are screaming.

My biggest fear with the weight loss is that as my body begins to cannibalize itself for fuel, it will start taking the muscle first and not the fat. So I need to start some simple stretching and weight lifting to save my muscles from complete atrophy. But of course, for any kind of physical activity, I need to be getting enough appropriate nutrients. Again a challenge. It's hard to do any kind of exercise, like stretching, walking or laundry, without enough energy to sustain oneself.

Then there's the abs. My abs are totally ripped. Well, actually, they've been sliced by a scalpel. So at least I can say they are "cut," right? I think they cut along the connective tissue but I'm not sure. In any case, they have to get at the organs underneath the muscles somehow, right? I've been told it can take up to a year for these muscles to heal completely; the specifics are on my list of questions to ask the surgeon at my next appointment. You know all that "engage your core" you've been hearing in pilates class for the last 10 years? Yeah, I can't do any of that. And no heavy lifting either. I'll run the risk of a hernia or even permanent damage. And I don't want to jeopardize my future as an abdominal model.

I get on this scale almost every day. I'm pretty sure it's broken because it's cheap and it doesn't function the same way it did when I first got it out of the box. Right now I'm holding pretty steady with a fluctuation of +/- 3 pounds. It's the time when I get on one day and find myself down five pounds from the day before, then the next day another three and the next day another four, that's when I'll be in trouble. That's the day when the old me, who would be jumping for joy, will be tempered by the new me, who will be very concerned and start consulting medical texts and scouring the shelves of GNC for some miracle product that will help me gain weight. And the old me will want to smack the new me. But that's just how it goes.

One month down!

I know full well that there is no normal. There are no true milestones to look towards. There is no way to compare my progress to anyone else's to see how my adaptability and recovery measure up to others who have had this surgery. But it doesn't stop me from doing just that.

One young man returned to his office job on a part time basis after only three weeks while I've heard of others who are considered permanently disabled and unable to work; so I guess I'm doing okay. One woman jumped back in to her usual workouts on an elliptical trainer and strength training after only one month, while others are barely able to consume enough calories to muster the energy to walk to the refrigerator to get something to eat, so I guess I'm somewhere around average or normal.

I'm contantly re-reading the abandoned "gastrectomy" blogs of those who came before to see what I should be doing, what I should be capable of at any particular point in time. Laps around the whole floor the day after surgery? I only ever did half a lap in the hospital and that was a full week post-op. Well, it must have been a tiny hospital those others were in, right? What about that goo that I may find myself gagging up? That happened to him at five weeks and her at about two months. When will it happen to me, if it even does?!

I realize that the body adapting to not having a major organ is no competition, but still, I'd like to at least place. At least be in the middle. I guess for now I am. Sometimes on the lower end of middle, or "less adjusted" if you will. I realize things could be better. As long as I don't start to think they should be better. And I'm thankful every day that they are not worse. Because things can be a whole lot worse!

I took a drive on Friday with my son; my first excursion behind the wheel for a little over a month. At my appointment on the 3rd of August, my surgeon did not give me clearance to drive. And that was fine because I didn't feel up to it at all. She said to just make sure I felt okay, wasn't nauseous or taking pain meeds, duh, and that I could turn around okay and perform all of the functions a driver does without feeling uncomfortable before I tried to drive.

I spent a large part of the day listening to the township crew resurface our road and then listening to the dogs bark at the guys when they were right out front. As early evening approached, I decided to take my son out for some food and ended up running into town and getting some pizza after stopping at the bank. It was a nice, short trip that actually did tire me a bit; so I had to rest when I got home.

So that's another milestone I have accomplished. And I did it right around the same time my niece took her first drive, so I'm right on target. Comparatively speaking!

Craving

Let's just forget about last week, okay? Several days of me feeling just awful and thinking it would never end. It's nice to have come out of that. But eating and drinking continue to be a struggle. I have to make sure I'm getting enough nutrients and a good balance as well. Mostly I need protein. Soon I'll have to do a full nutritional analysis of my diet and adjust everything accordingly. After the past few days, I'm happy to simply ingest anything at all.

One thing that I've read and heard time and again is that foods that work one day, may not then next. I'm starting to discover the reality of that. One thing that I started early on is those Carnation Instant Breakfast packets. They were awesome and really packed a lot of nutrients into 8 ounces of liquid. Plus since it is liquid, I feel like I can take less time between the eating and drinking when that is the eating part.

I figured I wouldn't be able to drink the whole glass at once, but on the first day, the first half went down so easily and quickly that I finished the whole 8 oz. Then every day I had it, which was most, I would drink the whole glass in one sitting! Now don't get me wrong, one sitting would take 45 minutes to an hour! But it seems now, I just can't take them, they make me feel awful. Before I abandon them for a while, I'm gonna cut back to 4oz at a time.

My general overall discovery of the past few days is that I have been eating too much at a time, that being about half as much as normal; now I have to eat even less. I realized I have to be militant with myself as well. I've taken to setting a timer as soon as I am finished eating something, say, four crackers with peanut butter and banana slices or drinking 4 ounces of Vitamin Water/water mix. So that as soon as 30 minutes elapse, I'm ingesting the next thing. What I've realized is that I need to start making things to eat before the timer goes off, because that's when I should be eating.

So really the majority of my day is spent preparing things to consume and then actually consuming them. And these seem to be issues that only make sense to those who have to deal with them. Reading about and hearing people discuss these things previously left me skeptical. Does one really have to remember to eat and drink? Do you really spend ALL DAY consumed with the trivialities of eating and drinking? Can this actually make a person want to pull their hair out?

Well now I know. Yes. Yes. And OMG YES!

I've always been into cooking shows and Food Network, Top Chef and stuff like that. Now I have a love/hate relationship with all that. On one hand, I'm still an aspiring "foodie" but at the same time, right now there's not a lot I can eat; either by volume or from a varietal perspective. So sometimes it's tough to watch.

Friday I woke from my nap craving a particular sandwich. I wasn't really sure but I envisioned something like an Italian Hoagie only more like a grinder and without the lettuce. Then, going to sleep last night, I was watching that Diners, Drive-Ins and Dives show. Ordinarily, the food on that show is just slightly on the wrong side of unhealthy for my tastes, but I was loving the items featured on this episode. I started analyzing the ingredients to see if they would be okay to eat and then plotting as to how I could get my hands on something close to it and how far would I have to travel and how soon could I go. Like a crazy person. "Someday . . . sooooomeday!"

Well yesterday, we got take-out from a pizza shop and Dan ordered me an Italian Special grinder with no lettuce. Aside from the fact I was drinking when he brought it home and I had to finish the glass (20 minutes) and then wait for that to settle through (30 minutes), it simply didn't unfold the way I had envisioned it.

Dan got me a small one which was still way bigger than I can eat in one sitting. I went to cut a reasonably sized piece off, so I cut one of the halves in half, right? Well as I was cutting it, I realized the roll, while perfect for this sandwich, was going to be too hard for me to chew up properly and I had to separate the sandwich. Next I remembered all the sausagy meats on an Italian sandwich. I'm still avoiding this kind of food as there's "too much going on" in sausage and I need more time before I attempt it. So I removed the pepperoni and anything else that appeared sausagy. I was left with a little pile of basically ham/capicolla with melted cheese and a tiny bit of sliced red onion and tomato. Which was fine and I cut it into tiny bites and chewed them well and everything went down well, no problems afterwards. But . . . It just didn't satisfy that craving I had earlier.

I think what I am missing isn't any kind of food itself but simply the manner in which we eat. When you think of a hoagie or a cheesesteak, you think of holding your food in your hand and chomping savory bites, nom-nom-nom. Cutting a pile of ham with a knife and fork and then taking dainty bites just isn't the same!

Someday . . . sooooooomeday, I will nosh on a cheesesteak. Well, maybe half a cheesesteak. I will hold it in my hand, not cut it into little bites. It will be a pizza steak with mushrooms AND onions. And extra cheese. And I will be able to take a bite out of it. Roll and everything!

First Post Op Appointment with Surgeon

Yesterday I saw Dr. C. She was pleased with how the incisions are healed and took the steri-strips off of the smaller ones. I told her just to leave the big one because I was paranoid that ripping that big long one off, would open the wound, even though I know it won't. I guess this is a good place to explain all the incisions and holes that were made in my belly since I haven't done that previously.

We had decided to do the surgery laproscopically, so there would be a few small incisions rather than one big one and I also should expect a shorter recovery time. I told her I was fine with that as long as they could get everything out that way. She said she was pretty sure they could but set the surgery up to be prepared to go in the traditional way if there were any complications. She also wanted to try these new staples they have to close the anastomosis, and I told her I was game for that too.

As it turned out, she was able to perform the surgery laproscopically and get everything out that she needed to. The problem came when they went to staple the anastomosis, the new connection between my esophagus and intestine. It turns out they couldn't fit the stapler down my throat to do it from the inside. It's hard not to picture these doctors with a standard office Swingline trying to get it down my throat. I can only imagine that it's smaller, like those mini staplers you get with desk sets that never work.

So they ended up doing a standard incision anyway (from sternum to navel) just to make the new connection. So yes, my abdomen will be a mess of scars, from all that. Not to mention the holes for the feeding tube and the drain tube that was in. I'm not really concerned about it as my bikini modeling days are long over!

Dr C. told me that while it might be hard to hear, everything I'm feeling is completely normal. Yes it stinks and it's awful but it's normal. So I'm thankful that there's nothing abnormal that I'm feeling because that would mean something is terribly wrong!

Pity Party - Don't Buy Into It! I Just Need To Vent...

Pardon the slowdown with the posts. I've realized that this will be a lot harder and take a lot longer than I originally thought. I asked my niece the other day how long it takes before I don't feel like total crap every waking moment. She hastily replied "six months." I wanted to cry. I think I did cry. But that seems to be the norm, four to six months before there are breakthroughs that allow one to feel anything close to normal.

I don't need to go into the details. It's hard for some to believe that trying to get enough to eat and also drink in one day is actually a struggle worthy of breakdowns and panic attacks. Not to mention the pain and nausea that eating and drinking cause. Plus, I need to remain upright for up to 30 minutes after eating or drinking anything. When I most want to just lay down and relax, I have to be sitting up or even walking around!

And I'm unable to drink and eat at the same time. At first, it's recommended to let up to an hour to pass between the two. (I'm trying to whittle that down to 30 minutes). Which is difficult when you are told to eat every hour and a half to two hours, it takes 30-45 minutes to eat, and you have to squeeze in fluids with almost an hour on either side between those frequent mini meals. If you do the math, you will clearly see that it is IMPOSSIBLE to work that schedule, and I'm often falling behind well before noon.

I'm most concerned about hydration. I was keeping a 64 oz container of water in the fridge to measure how much I had been drinking and was doing pretty well for like the first week. Now water seems to be giving me problems.

I'm the kind of person who would chug water, every morning, every evening, the middle of the night. I keep these frosty mugs in the freezer and would pull one of them out several times a day, fill them up two, maybe three times and chug glorious life-giving water. Well those days are over. Not only do I have to take little sips (I'm almost up to half a gulp though!), but water actually makes me feel I'll. I though it was the weirdest thing until my niece concurred that she couldn't drink straight water either.

So now I am attempting adding Crystal Light powder to my water to make it more palatable and go down better. I attempted Gatorade but I don't think it agreed with me. Yesterday I started some Vitamin Water and that didn't hurt as bas as Gatorade. The only thing I've found that works ok and actually eases any nausea/I'll feeling is Ginger Beer. No, not Ginger ale, that would be too easy, and cost efficient. It's this all natural Jamaican style beverage. And oh yeah, I have to open the bottle well in advance and then stir it in a glass until all the bubbles go away.

Usually the saying goes "No News is Good News" right? Unfortunately in my case the opposite is true. But I realize that most of you are reading this blog to keep track of my progress and I don't want to be a Nervous Nelly or a Debby Downer. I'd rather focus on the triumphs and successes. They will just be few and far between and this process of recovery will take much longer than I originally thought.

Regrets

It began as just a few pangs and flashes here and there throughout the day. But it's slowly growing into an all-consuming fear that I just should not have done this. At least not yet. This is the stunning and sometimes delusional feeling of regret.

My feelings about Total Gastrectomy(TG) have run the gamut since I was first made aware of the treatment about five or so years ago. My sister had been looking into options for people with the CDH1 gene mutation and had stated not only her intention to have the genetic test but to have her stomach cut out of her body even if screening indicated it was perfectly healthy. I thought she was 100% certifiably insane. Surely there must be other options?! Even at the time when my sister was planning and going through her surgery, my feelings for myself were that I would never get my stomach removed. Ever.

Depending on the screenings and pathology that occur prior to surgery, TG can be considered prophylactic, in another word preventative, if there is no evidence of cancerous cells -or- if carcinoma is found in the stomach and then it is removed and there are no signs of growth to the lymph nodes or other organs, it is considered curative. However in many cases, patients who are seemingly getting a prophylactic TG, find out after the fact that their surgery was indeed curative as the pathology report of the stomach often reveals tiny pockets of cancer cells.

There's no telling how long those cells would take to multiply and spread around; it could take years, it could take decades. This is why doctors are unable to advise patients on the timing of a TG. The answer always seems to "as soon as possible."

Obviously in my case, the stomach was not perfectly healthy. A biopsy of the gastric antrum showed signet ring carcinoma. According to the surgeon the post operative pathology report showed this was the only area with cancer cells. So maybe I could have waited.

Maybe I could have planned better, mentally, physically, financially. Maybe those signet ring cells would have just sat there doing nothing for 30 years and I could have gone on to live as I always have, with a stomach. Maybe I could have had time to climb a mountain, or win Survivor, or chug a few more Irish Car Bombs.

Barely a year ago, before I had the test, I remember thinking that even if I had the gene, I was going to be the one to get rid of it without surgery. How did I forget that? How did I forget that I couldn't fathom having my stomach removed? How did I lose sight of the fact that I was going to be the one to beat the odds? I was going to be a miracle. The researchers would be flying me all over the world to study me and figure out what I did to keep the cancer at bay.

I was going to pray, meditate, visit the most powerful shaman, astrally journey to the masters of healing on the fifth dimension, channel the energy of the universe, or simply will my body to reject this cancer, do what ever any number of crackpots suggest it would take, but I absolutely positively would not succumb to having my stomach taken out. What happened to that positive thinking? How did I forget that I was going to use any and all methods to cure myself other than surgical removal of the stomach?

I obviously acted impulsively. I jumped the gun and didn't think things through. If I had, I might be playing with the kids in the pool right now, or we'd be hiking at the park, or I'd be gainfully employed. I certainly wouldn't be sitting here, waiting for incisions to heal and the pain of digestion to subside so I can make an attempt to rest.

I just can't stop thinking that maybe I did this too soon.

Two Steps Forward; One Step Back

Ingesting just one wrong food can ruin your whole day. No split-pea soup for me anytime soon thank you. When I'm having a good day it's easy to lose focus and start to believe that this isn't the long, slow process that it is. A good day is just that, better than average, and certainly not to be be expected.

Yesterday I sat outside and the weather was perfect. It's hard to believe it's late July, with the mild temperature and slight breeze.

I've probably spent less than one total hour outside over the past two weeks, and naturally, that's only been in the last few days since I got out of the hospital. Although from what I gather I should be thankful I didn't have to go outside during what was a typical Mid-Atlantic wave of heat and humidity. Especially having been in the city. So it's nice to finally get some fresh air and a little bit of sun on my head.

Waking up and eating breakfast is so tiring that I often need a nap shortly after breakfast. I found my head bobbing the way it used to when I sat in the back of Geometry class in high school. Unable to get in a comfortable sleeping position outside, I went in but that nap never happened. I tried for three hours to snooze and really felt so tired but just couldn't manage to fall asleep. Mom came over to help out and I got to thinking that I wanted to go to the store to get a few things.

I really needed to check out some items, read labels, compare nutrients, etc, to find some food stuffs that will work for me. I sometimes find myself pacing around my little house in order to get my digestive tract (and anything in in it) moving. So it's not unusual for me for me to be walking around for 1/2 hour, sometimes longer. I figured that with all the laps through my house that I do, I could stand walking around Giant for a little bit. Or I could zoom around in one of those motorized carts they have for people like me.

Well you all know how "just running in to the grocery store for a few things" works out, right? This was no different. Complete with criss crossing the store a few times due to forgetfulness and general idiocy. And my poor mother trying to keep up with me darting back and forth in the hoveround cart. Two hours later, we walked out of the store. I don't know what I was thinking. But I'm a little less worried about getting at least some basic nutrition in my body everyday. And I'm hoping for a lot more rest today!

Baby Steps

Over the past week, I've often found myself drawing analogies
of the body relearning to eat and process food being akin to that of an infant:

In the hospital I constantly referred to the liquid feeding tube nutrition as "formula."
The natural progression for patients after a TG is obviously to start out eating soft foods and progress to solids.

The other night as I began to eat my dinner, I made a startling observation. I had a very small portion in a little bowl of half a hamburger and about 1 oz. Of cheddar cheese both cut up into little pieces. I stared at this portion of tiny bites for a minute or two and realized that I'm eating like a toddler.

I had a craving for pudding last night and was discussing with my husband what to look for on the labels. I abhor Splenda and other artificial sweeteners, so I'm looking for something with real sugar, just not a lot of it. While discussing the differences between such marketing labels such as "unsweetened" and "no sugar added, " it seemed like a lot of work for Dan to just pick up some pudding. I got to the point where I almost told him to just get me toddler food pudding.

This surgery really is such a gross violation to the body, it's a wonder that it responds positively all. Think about it, the esophagus and upper intestine have their mutual friend, the stomach, literally sliced away from their lives and then the two are violently brought together and told to get along. Nicely. Forever.

Then the Small Intestine is told it has to do work it never signed up for and for which it will never be properly compensated. It's like you work at the fish-breading factory and for years you've been getting these nice filets to dip in crumbs. Suddenly the conveyor belt is spitting out whole fish and now you have to completely gut and clean the fish before you bread them. And you have no new tools or more time in which to do it.

Quite a miracle of biology.

And this is why I have such peaks and valleys. It's a long road.

Forgot to Mention . . .

When I saw my surgeon on Monday she had other news that I neglected to pass along. There was no evidence of the cancer having spread; so that means no chemo, no radiation. Just as planned, they extracted the entire stomach, the omentum and a few local lymph nodes. The only place the pathologist found cancer post-op, was a tiny little place in the stomach just where the endoscopy had detected signet ring cells back in the Spring. It dawned on me today that many people might be thinking that I'm facing the devastating standard cancer treatments many patients are forced to endure. Well, thank the lord, there's nothing of the sort needed. Are you kidding, I could never deal with that!

I knew prior to surgery that it was unlikely that the cancer had spread. The possibility certainly existed, but I chose not to entertain it. I apologize to any who may have been concerned about that aspect of my illness and surgery. It may have been nice to get a confirmation earlier than now. I don't mean to be so cavalier about it, I just hadn't been thinking along those lines at all.

In other news, I finally watched that episode of Grey's Anatomy that has a storyline of a family dealing with this condition. I'm a little ambivalent about it. On one hand, I almost got chills when I heard the words "Hereditary Diffuse Gastric Cancer" and "CDH1 gene mutation" uttered by characters on a major prime time hit network TV show (exposure, exposure, exposure) but then hearing all the inaccuracies kind gave me a sick feeling in the pit of my, um . . . small intestine? Well that doesn't exactly roll off the tongue now does it?

In any case, I recall my sister Rose addressing this in her blog so I will just steal her words when it comes to this show:

On the one hand, I think it’s great that a family dealing with HDGC was introduced on such a popular prime-time television
show. Undoubtedly, this exposure will help to raise awareness of this little-known and very rare syndrome. And they did an excellent job of
portraying some of the issues that such a family faces, such as

GRIEF and the loss of family members
FEAR and deciding whether or not to have the surgery
On the other hand, there were many factual errors, such as

-the surgeons felt a “mass” in Tricia’s stomach when they were taking it out — As you probably know, with diffuse stomach cancer, there is no MASS since the cells are scattered throughout the lining of the stomach.
-the doctors told the family that it was a “highly aggressive” form of cancer and that “tumors grow quickly” — No one knows how long my father had cancer in his stomach, but I’d be willing to bet that it was there, hiding, for YEARS before it was found (too late). This cancer is not “aggressive”… it is STEALTHY (and therefore, all the more deadly).
-they mention “dumping syndrome” but they don’t explain what it is
-the list of possible side effects and complications from prophylactic gastrectomy includes ANAL LEAKAGE — I have done a lot of reading about HDGC, and I don’t recall EVER hearing that anal leakage is a possible side effect of having your stomach removed!

And that's all I have to say about that!

First full day home presented some challenges. It's really hard to get in and out of bed without something to hold onto! Mom came over to help and was here all afternoon though. I think I'll feel better when all the edema finally subsides and I gain some flexibility back. Eating is a chore. This is all to be expected.
There are milestones in my head; one year being the best one, but it's so far away so I start to break it down. Four months will be good; two months I can probably go back to work, though I'm pretty sure my bar tending days are completely behind me. One month, the major effects of general surgery will be finished. Two weeks, I should have a lot of strength back. One week, I should be eating better. But for now, I'm almost finished with today, and that's a major accomplishment!

Home at Last

A full two days after I expected to be let go, they finally discharged me. My surgeon even removed the dreaded malfunctioning feeding tube. The concern is that when you put one of those things in, it takes a while for healing to occur around it and you need that essential "scarring" to keep fluids and such from escaping the intestine into the body cavity thus becoming septic. That's not pretty at all.

At first, she actually had me convinced to keep it in for another week. Then she was taking a look at it, explaining how she would take the outer part out and just leave the "port" if you will there in the skin. She said she would just stitch up the part so there's no way for anything to get in from the outside.
"Or we can just take it out now," she said.
"What?" I couldn't believe it. " No! You said-"
"Nah, let's just take it out now. How bout this, I'll take it out now but I get you for one more day and you can go home tomorrow."
"I'd rather just keep it in then."

She eventually pulled it out AND let me go.

So here I am in my own bed and really happy about it. There's a bit of apprehension for no longer having a nursing staff on the other end of a button next to my bed. It's nice to have that assurance in my head. This is a difficult road to take but every day will become a bit easier.

And again, I appreciate the support of all my family and friends, old and new, near and far. Every time I start to get down or weepy or feel myself falling into a full-blown panic attack, I think of all the people who are pulling for me and I draw on that strength to recharge my own,

My Hero, The Surgeon, Returns to Save the Day

After five days of the worst physical discomfort I could imagine and then about 36 hours of banging my head against the wall with near useless protestations, my doctor returned and started to set everything straight. When she came in on Thursday afternoon to pull out my NG tube, she informed me she had to leave town for the weekend due to a family medical emergency I didn't think much of it at the time. But the weekend went very poorly for me.
Dr. C. Swooped in at about noon yesterday with an array of questions:
"Why are you still on a feeding tube?"
"Why are you still on a liquid diet?"
"Why are you still in this room?"
Jeez, all the same questions I had been having for days.

She immediately switched me to a regular diet and ordered my transfer off of the Surgical ICU.
The feeding tube continues to be a struggle.

Now, I believe in teaching hospitals and they play an important role in the instruction of the next generation of medical whiz kids. I have a Surgical "team" of med students, Interns and Residents, who as part of their education and training are discussing my case and trying to figure out how to proceed with my treatment and recovery. I am the third member of my family to have this surgery at this hospital. I would think they might have a few things figured out by now. Can't they put an extra "addendum" to their text books regarding TG for HDGC.

At about 4pm yesterday my feeding tube, (the one I don't need or want, the one my surgeon told me I probably don't need) got
clogged. Various methods were used to try to dislodge the obstruction to no avail. I was finally moved to my new room #1312! (Hey, there were a bunch of cool chicks living at that number on Rodman Street about 20 years ago weren't there?!)
The new nurse there tried to unclog it. A Resident there tried to unclog it. I repeadedly told everyone involved, FROM THE MOMEMNT IT CLOGGED, that I'd rather have it just taken out. They seem determined to get this fixed through.

Arguing with the Residents; Must be Feeling Better

Wow, that was totally unexpected! By far the worst five or so days of my life ever. Had no idea, despite research and being given first-hand accounts, just awful those first few days would be.

Thanks to everyone for their well-wishes, positive vibes and good old-fashoined prayers. They certainly helped get me through the surgery. Now I'd like just a few more please, to get me through at least the next few weeks. Hope I'm not being greedy. I just used everything up getting from Tuesday to Saturday. I'll tell you, all the remarks about be being so strong and courageous went right out the window about Thursday. I felt like the biggest fraud.
"But I can't DO this," I wailed to Dan.
"Just press the botton, hon." A reference to my on demand pain medication.

Saturday night was the first time I had any more than 40-60 minutes of sleep at any given time. So I woke up Sunday feeling rather stiff and groggy. I've been having issues with the tube feedings and on Saturday I got them to put a hold on them. The nurse had told me that one of the Interns was going to come talk to me about the importance and necessity of the tube feedings. When she got to my room, with her textbook copy of the jejunal tube procedure, she asked why I needed a feeding tube after my surgery. At first I thought she was poising herself for a little lecture and then I realized that she really didn't know. "Wait!? Are you asking me to formulate your main premise for you? Because clearly this is an arguement you can't win."

Well that's where I am right now. I want three things:
the feeding tube removed
FOOD
and to be at home!
I'll let you know how that works out

...and more progress

On Friday, the docs gave the OK for Terri to start on a clear liquid diet... broth, tea, jello, juice, etc. I talked to her on the phone today, and she sounded really good! Dan brought the kids down to the hospital for a visit with her today. I'm sure she was glad to see them... and I KNOW they were glad to see her!

Hopefully, she'll get discharged soon.

Progress

Terri was very glad they took out the NG tube this morning. By the way, NG stands for Nasal-Gastric (if you need to know more, look it up... I'm not going to get TOO graphic here... suffice it to say that the tube REALLY irritates your throat).

So NOW her main complaint is GAS pain. The problem is, the gas is not just in the digestive tract (which can be expelled relatively easily in one of two directions ;) The air is trapped in her BODY CAVITY and the only way for it to GO AWAY is for her to get out of bed and WALK... and/or to do other movements (shoulder rolls, deep breathing, etc.) to help break up the air, and eventually it will exit through her body tissues.

You might wonder WHY there is air in her body cavity... well, (according to Wikipedia) when surgery is done laparoscopically, "The abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas. This elevates the abdominal wall above the internal organs like a dome to create a working and viewing space. CO₂ is used because it is common to the human body and can be absorbed by tissue and removed by the respiratory system. "

Even when you have traditional surgery to remove your stomach (with one large incision, like I had), air gets trapped in your abdomen after the incision is closed. And the pain can be horrible. It wasn't easy, but I forced myself to walk and move around as much as I could after my surgery to help break up that air/gas so that it would "go away" sooner.

Tomorrow, Terri is scheduled to have the Barium swallow test, which will (hopefully) verify that there are no leaks in her new plumbing... if that goes well, then she can start drinking/eating. Fingers crossed!

Out of bed

I just talked to Dan and my mom. They're at the hospital, and they said that Terri has been out of bed, sitting in the chair, for the past 4 hours or so. AND... just a little while ago, a nurse came in and helped her take a short walk. Good news!

Quick note from Dan...

Terri came out of surgery about 3hrs ago. Her doctor said she did very well. We are currently in her room with her, she is uncomfortable but awake with her sense of humor intact! There are no signs that her cancer has spread. She and I and our families thank all of you for your prayers and words of encouragement.

Surgery's done... the Recovery begins NOW

Hi everybody. I'm Terri's sister Rose. I just got word from my niece Rachel that Terri is out of the O.R. and is now in Recovery. The surgeon came out to let the family know that everything went well. The surgery took about 3 1/2 hours. Even though Terri, Dan, Rachel, and my mom had been at the hospital since 10am, they didn't take her back to Pre-Op til almost noon.

She'll likely be in Recovery for a couple of hours then they'll move her to a patient room. Until she's able to post herself (probably in a couple of days), I'll try to keep you updated on how she's doing. If you post comments here, she may see them in a day or two :)

Okay, Okay, I'll Be Doing Some Writing

I just can't seem to find the words to express how wonderful my friends are, but if I could I would be typing them on my new iPad right now!!!!!!!!! What an unexpected and extravagant gift. Thanks and love to Mike, Al, Landow, Lewie, Becky, Brian, John John, Bobby, Stacy, Ryan, John, Kenna, Farren, Kevin, Jen-nay, KAK, Ani, Shane and Bill ... but mostly Shane! Haha. Sorry if I forgot anyone. You all know who you are.

Additionally I would like to thank everyone who has sent me emails, messages, and/or comments here. Your offers of assistance are invaluable and likely to be called in at some point; your positive thoughts, healing vibes, prayers and other appeals to deity are not only appreciated but received, absorbed and sent right back out into the world to do more good for other people. Keep it coming. I have a enormous sense of gratitude unparalleled by anything I've experienced ever before.

It's 3:40pm and I'm sitting here waiting for the apprehension and nervousness to attack. I am hoping it will creep up slowly, allowing me time to acknowledge it, battle it briefly and send it away. But I fear it will hit like lightning, a sudden and forceful onslaught of fear, confusion and helplessness. Once after scheduling calls with my surgery time and again when I'm lying on a gurney and a swarm of people start to poke and prod me.

Preparation is all I have left to do. I need to pack a bag to take care of all the physical things I'll need. Then I'll have a nice relaxing soak in the tub to do well by my mental state. I'm going to look at this like a mini-vacation. An extremely physically uncomfortable vacation, but a break from the everyday, nonetheless.

Just One Last Taste . . .

I should have started this weeks ago, but it only came to mind just the other day. Most foods and beverages that one particularly enjoys will be off limits to me for many months, if not a full year or more. So I decided I need to be very purposefully enjoying my last chance of many savorings; so that there's nothing I will miss in the next few months.

I started Wednesday when out to lunch at Garces Trading Company. I wanted to take take photos of the meal, but felt very awkward about it. I don't know why, I have friends who do it all the time. It seemed distruptive or rude. But in retrospect I should have just subtly positioned my phone above the dishes and snapped away.

One side of the menu had various cheeses listed on the left and on the right was a selection of "charcuterie" which I figured basically means "cured meat." I had no idea what to do and Mom suggested we ask our server for recommendations.
"He doesn't know anything." I replied.
"You don't think?"
"Of course not," I assured. "They're trained to say the words right and then just bullshit about the dish with an air of confidence so as to make the diner trust in what they say."
"Do you really think so?"
"I KNOW so, mom."
Now, don't get me wrong; maybe our server was truly knowledgeable about fromage and queso and charcuterie. But in my experience it's not so much the possession of actual food and beverage knowledge that gets servers through their shift, but the successful portrayance of an illusion of said knowledge. Now this post is sounding all too much like it belongs on that other Blog I used to write. So I'll try to keep this brief.

We started with a very thinly-sliced French sausage and a French semi-soft cheese both of whose names elude me at this time. Come to think of it, they eluded me when I ordered them and probably butchered the pronunciations. They were served on rectangles of slate, at which I remarked to my mother, "Wow, these must be a pain in the ass to clean." A sentiment she felt complelled to echo to our server. Mom had the Vichyssoise and I had The "Italian" Sandwich, which is described as breasola, hot coppa, melted taleggio, arugula and lemon confit. Translated, that means gooey cheese and cured meat on a delicious piece of bread with some greens and a tasty sauce.

I emailed the four members of my family who have had this surgery before me and asked for their "last-minute" advice on what to do/eat, these last few days. The general consensus is "anything and everything." Because tomorrow I will be laying pretty low and fasting even more than is medically required, I figure today is it. Luckily for me, my nephew is having his graduation party tonight (10 years of architecture school! WTG Eric! Drexel Class of 2010!). This is a nephew who, before choosing to study architecture, was seriously considering becoming a chef. So the kid has great tastes. Come to think of it, the party already started. So I need to finish this up. I may or may not add to this as this night goes on, if I can figure out how to post from my phone.

In the mean-time, here a few things of which I've had the sense to get some in the past two days:







And a few more:

Fresh picked wild raspberries:


SAAAASAGE wit onions n peppers. Yup thatsa Philly thing:






Breakfast!


Smores!