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).
Tuesday, November 30, 2010
Sunday, November 14, 2010
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 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.
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.
Friday, October 29, 2010
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!
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!
Monday, October 25, 2010
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 myrecovery adaptability!
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
Tuesday, October 5, 2010
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!
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!
Monday, September 20, 2010
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.
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.
Wednesday, September 15, 2010
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.
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.
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