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!