Definitely the longest stretch between posts, huh? You would think that the awful picture attached to the last post would have been enough incentive for me to write more in order to push that photo quickly from the top and front page of this blog. Sheesh!
Well the truth is that I don't want to bore everyone to death with the minutiae of my life. I mean people can only take so much, "Ate breakfast. Felt like crap but much better after I lay down for a bit. Ate Lunch. Felt like crap but ...," so I'm sure you understand.
With the holiday season upon us, everyone's social schedule gets a bit fuller. The December calendar tends to reach full capacity before Thanksgiving even rolls around. For me, the simple act of socializing presents itself with an unusual and, given my past as a bartender at a high-energy establishment, ironic dilemma.
It exhausts me. Completely. Yep, just sitting in a bar and trying to hold a conversation over the din of the crowd, sports on TV and especially live or loud music, is enough to send me to bed early where I'll sleep away half the next day. Simply talking to someone for more than a few minutes causes me to lose my breath and forces me into a state of quiet apprehension.
Recently I attended an informal meet up of fellow high school graduates from the 80's at a local bar. I discovered to my dismay that this reluctance to engage in animated conversation, combined with my increasingly common short-term memory loss which sometimes causes me to trail off in the middle of ...
Wait. What? Anyway, I realized that I can come off as abrupt, anti-social and rude. Especially when I just up and leave without the fanfare of impassioned great-to-see-yous and goodbyes and well wishes (though truth be told, hasty and quiet exits have always been part of my repertoire). But the fact is now I'm just exhausted and forgetful and I need to find someplace quiet to rest.
I had been out of the hospital after surgery for about a month when I attended my first social function. It was a low key affair, drinks and appetizers at someone's house, then off to the bar for the kids to get a bit more rowdy. I thought it was probably a bit to soon for me to be going out and indeed was at the bar for only a short time before I realized I couldn't keep up with the music and shouting and movement. It was all just so overwhelming.
That was over a year ago, but I still feel the same way about bars and parties and noise. Shouting a conversation in the ear of a friend I'm practically standing on top of because the place is so crowded used to be activity in which I preferred to not engage. Now, from a physical standpoint, it is essential for me to avoid such situations. It requires a certain energy that I can no longer muster.
Small, intimate gatherings are more my speed as are places that aren't so loud. The biggest upside to going out is that I'm such a cheap date. Considering I can't eat or drink as much as I used to, the bill is always manageable for me, which is nice. Cheers!
Tuesday, December 6, 2011
Friday, July 15, 2011
The Difference a Year Makes
It's hard to believe it's been a little over year. It's even harder to believe I'm doing as well as I am. I remember those first few days in the hospital; the absolute hell I felt. And the first few weeks at home, a sobbing little wreck of a human wondering if I would ever feel normal again. While "normal" is certainly an adaptation of what it was a year and five days ago, I've made a successful return to this newfound way of eating and living.
So to anyone reading this who is facing this surgery or is in the early stages of recovery-- remember, it will be just the most awful thing at first, you'll wonder how you will ever get through it. But it will get better and easier over time. I think even with warnings, a patient doesn't know just how difficult it will be. My brother didn't sugar-coat anything, "Teresa, this surgery is the worst. It's absolute Hell. You don't even feel human." But somehow it just didn't sink in; didn't quite convey the reality of the awful physical pain and discomfort combined with the mental fugue in which I would find myself immersed. But it's only really bad for a few days, and if you're like me, you don't remember most of it. I guess I have Morpheus to thank for that!
While there are many complications that can impede one's recovery it was always important for me to keep my thoughts positive in terms of the outcomes. Part prayer, part mantra, part "spell" if you will, the repetition of affirmations had been an almost frantic ritual in the days leading up to surgery and even for a while after. Add that to all the prayers and good vibes sent by countless family and friends, and I had a recipe for recovery.
One of my mantras was for "my gastrointestinal tract to adapt to not having a stomach." and I think it made a huge impact on my long-term recovery. I still have some discomfort with digestion. But I'm accustomed to it. What would send a stomached-person [<<--- new phrase I just coined] straight to the medicine cabinet for Rolaids or Pepto Bismol is just part of my everyday life. If it becomes unbearable, I just chew some crystallized ginger or ginger Altoids and that helps. I also know the feeling will usually pass in 20-30 minutes.
You learn to build the time you feel bad after eating into your schedule. For example, my daughter will ask when we are leaving to go shopping. My reply is usually something like, "Well I have to finish drinking this, then wait a bit and get something to eat, then sit there and feel like crap for awhile, so in about an hour, hour and a half, I'd say."
Lots of physical activity wears me out. In this summer season, we tend to get out more and go to parks and festivals that involve lot of walking around. I was always one to move at full speed, quickly snaking my way through any slowly ambulating crowd. Now, I find myself out of breath when I start going full speed. Its very frustrating because I've become that slow person I'm always in a hurry to walk around! But that's just me. I know of people who are running marathons after gastrectomy, so there you are. I wasn't running marathons before my surgery, so why should I be capable of doing so now, right?
My short-windedness is possibly a result of not getting all my nutrients. While blood tests a few months ago showed all my vitamin, mineral and other levels within normal limits, they were all at the low end of normal. Like an idiot, I didn't have my levels checked pre-surgery to determine a baseline of sorts, to see what was normal for me. I suspect they were on the higher end of the spectrum and the difference is what has lowered my overall energy.
Taking my supplements has not become the mindless habit it should have. I forget, I get busy. The daily AM and PM pill organizer didn't work. My sister and I had a conversation last fall about this. We determined that I should send her daily reminders to take her pills, she would send reminders to my brother, and he would send them to me. I noted that if we remember to send each other emails, we ought to just be able to remember to take our own pills. So everyday when I think of sending a note to my sister, I should just take my vitamins. Yeah, still not working.
The biggest accomplishment to date has been the fact that I've been able to give myself a B12 injection for the last two months in a row. Three months ago I had been determined to do it. But after standing in the bathroom for five minutes with my shirt slightly lifted, my right hand aiming the needle, dart-like, towards my pinched belly, I broke down and called Dan in to do it for me. I've finally summoned the courage and am able to do it myself. It takes a few minutes to psyche myself up, but I get it done! Still freaks me out though. And I still hate getting stuck with needles by anybody else.
There was a time, exactly a year ago, when I couldn't envision myself where I am today. I couldn't imagine being able to feel anything at all except pitiful, helpless, frightened. In those days I was focusing on making it though the next ten minutes. I couldn't even think about the next day, let alone a year down the road. Yet time marches on, as they say, and I'm glad to have reached this monumental milestone. While there are aspects of this new normal that I wish were different, or easier, I can only be extremely grateful to have come so far in this time.
So to anyone reading this who is facing this surgery or is in the early stages of recovery-- remember, it will be just the most awful thing at first, you'll wonder how you will ever get through it. But it will get better and easier over time. I think even with warnings, a patient doesn't know just how difficult it will be. My brother didn't sugar-coat anything, "Teresa, this surgery is the worst. It's absolute Hell. You don't even feel human." But somehow it just didn't sink in; didn't quite convey the reality of the awful physical pain and discomfort combined with the mental fugue in which I would find myself immersed. But it's only really bad for a few days, and if you're like me, you don't remember most of it. I guess I have Morpheus to thank for that!While there are many complications that can impede one's recovery it was always important for me to keep my thoughts positive in terms of the outcomes. Part prayer, part mantra, part "spell" if you will, the repetition of affirmations had been an almost frantic ritual in the days leading up to surgery and even for a while after. Add that to all the prayers and good vibes sent by countless family and friends, and I had a recipe for recovery.
One of my mantras was for "my gastrointestinal tract to adapt to not having a stomach." and I think it made a huge impact on my long-term recovery. I still have some discomfort with digestion. But I'm accustomed to it. What would send a stomached-person [<<--- new phrase I just coined] straight to the medicine cabinet for Rolaids or Pepto Bismol is just part of my everyday life. If it becomes unbearable, I just chew some crystallized ginger or ginger Altoids and that helps. I also know the feeling will usually pass in 20-30 minutes.
You learn to build the time you feel bad after eating into your schedule. For example, my daughter will ask when we are leaving to go shopping. My reply is usually something like, "Well I have to finish drinking this, then wait a bit and get something to eat, then sit there and feel like crap for awhile, so in about an hour, hour and a half, I'd say."
Lots of physical activity wears me out. In this summer season, we tend to get out more and go to parks and festivals that involve lot of walking around. I was always one to move at full speed, quickly snaking my way through any slowly ambulating crowd. Now, I find myself out of breath when I start going full speed. Its very frustrating because I've become that slow person I'm always in a hurry to walk around! But that's just me. I know of people who are running marathons after gastrectomy, so there you are. I wasn't running marathons before my surgery, so why should I be capable of doing so now, right?
My short-windedness is possibly a result of not getting all my nutrients. While blood tests a few months ago showed all my vitamin, mineral and other levels within normal limits, they were all at the low end of normal. Like an idiot, I didn't have my levels checked pre-surgery to determine a baseline of sorts, to see what was normal for me. I suspect they were on the higher end of the spectrum and the difference is what has lowered my overall energy.
Taking my supplements has not become the mindless habit it should have. I forget, I get busy. The daily AM and PM pill organizer didn't work. My sister and I had a conversation last fall about this. We determined that I should send her daily reminders to take her pills, she would send reminders to my brother, and he would send them to me. I noted that if we remember to send each other emails, we ought to just be able to remember to take our own pills. So everyday when I think of sending a note to my sister, I should just take my vitamins. Yeah, still not working.
The biggest accomplishment to date has been the fact that I've been able to give myself a B12 injection for the last two months in a row. Three months ago I had been determined to do it. But after standing in the bathroom for five minutes with my shirt slightly lifted, my right hand aiming the needle, dart-like, towards my pinched belly, I broke down and called Dan in to do it for me. I've finally summoned the courage and am able to do it myself. It takes a few minutes to psyche myself up, but I get it done! Still freaks me out though. And I still hate getting stuck with needles by anybody else.
There was a time, exactly a year ago, when I couldn't envision myself where I am today. I couldn't imagine being able to feel anything at all except pitiful, helpless, frightened. In those days I was focusing on making it though the next ten minutes. I couldn't even think about the next day, let alone a year down the road. Yet time marches on, as they say, and I'm glad to have reached this monumental milestone. While there are aspects of this new normal that I wish were different, or easier, I can only be extremely grateful to have come so far in this time.
Tuesday, July 12, 2011
365 Days Down ....
Here it is. One year ago today I lay supine on a cold steel table while a surgical team worked to remove my entire stomach, and with it, the existing cancer that had grown, plus any chance of recurrence.
As I sit here reading the Operative Report, I am in awe of what modern medicine can accomplish. With five little incisions, doctors went into my abdomen and were able to explore, cut out my stomach, omentum and a few lymph nodes and remove them from my body.
This has a nice, celestial-divine kind of ring to it and pleased me greatly when I first read it. Turns out Harmonic is pretty much just a brand name, but I'll stick with my interpretation, because it suits my mindset.
Every time I read this report I understand more and more what it is saying. Often I have to look things up. While "pancreaticogastric vessel" is easy enough to figure out, "ligament of Treitz" and "enteroenterostomy" are not part of my standard vocabulary. Slowly but surely, I'm figuring out exactly what happened in there.
Think about that, they pulled out my stomach through a 4 cm incision. Gross.
All went according to plan, until they couldn't get that damn stapler down my throat! Other than that it was quite a success. Curative.
So it hadn't begun to spread from the tiny focus in the antrim. Crisis averted.
On this one year anniversary of my surgery, my niece, the third of my deceased sister's five children, has an appointment with "the family surgeon" Dr. C. After she recently tested positive for the gene mutation, our Rockstar Gastroenterologist detected a small focus of early cancer cells in her stomach. I've said before that the biggest problem with diffuse gastric cancer is that endoscopic screening usually doesn't find the cells until they have spread a great deal.
While it's certainly a blessing that the Dr. L knows how to screen for this kind of cancer, because it raises the likelihood of finding it before it's incurable, on the other hand, once even a tiny localized spot of signet cells is detected, it raises the stakes and makes the surgery something that needs to be addressed immediately, not just sometime in the future. It's unknown exactly how long it would take those cells to start spreading. So once they are found, it's time for the stomach to go. Even if you're only 22 and have your whole life ahead of you.
Good luck little Lola, you're going to be just fine!
The patient is a 40-year old woman with a history of an E-cadherin mutation and autosomal dominance of gastric cancer in her family. She has recently been diagnosed as carrying the gene and has a focus of early gastric cancer within her stomach. She presents now for total gastrectomy for treatment of her cancer, as well as prophylaxis against future gastric cancers.
As I sit here reading the Operative Report, I am in awe of what modern medicine can accomplish. With five little incisions, doctors went into my abdomen and were able to explore, cut out my stomach, omentum and a few lymph nodes and remove them from my body.
The greater curvature of the stomach was dissected out using the Harmonic scalpel.
This has a nice, celestial-divine kind of ring to it and pleased me greatly when I first read it. Turns out Harmonic is pretty much just a brand name, but I'll stick with my interpretation, because it suits my mindset.
Every time I read this report I understand more and more what it is saying. Often I have to look things up. While "pancreaticogastric vessel" is easy enough to figure out, "ligament of Treitz" and "enteroenterostomy" are not part of my standard vocabulary. Slowly but surely, I'm figuring out exactly what happened in there.
The small superumbilical incision [then only 1cm] was extended for a distance of 3 cm and an Ethicon hand port was placed to protect the wound edges. The stomach and omentum were delivered through this incision.
Think about that, they pulled out my stomach through a 4 cm incision. Gross.
All went according to plan, until they couldn't get that damn stapler down my throat! Other than that it was quite a success. Curative.
At the end of the procedure, all sponge and instrument counts were correct x2.
[No hemostats left behind!] The specimen had been sent to Pathology and both the proximal and distal margins were negative for carcinoma.
So it hadn't begun to spread from the tiny focus in the antrim. Crisis averted.
On this one year anniversary of my surgery, my niece, the third of my deceased sister's five children, has an appointment with "the family surgeon" Dr. C. After she recently tested positive for the gene mutation, our Rockstar Gastroenterologist detected a small focus of early cancer cells in her stomach. I've said before that the biggest problem with diffuse gastric cancer is that endoscopic screening usually doesn't find the cells until they have spread a great deal.
While it's certainly a blessing that the Dr. L knows how to screen for this kind of cancer, because it raises the likelihood of finding it before it's incurable, on the other hand, once even a tiny localized spot of signet cells is detected, it raises the stakes and makes the surgery something that needs to be addressed immediately, not just sometime in the future. It's unknown exactly how long it would take those cells to start spreading. So once they are found, it's time for the stomach to go. Even if you're only 22 and have your whole life ahead of you.
Good luck little Lola, you're going to be just fine!
Friday, May 13, 2011
The One Hundred (and Cryptology Addendum)
Time to give a shout out and some much deserved recognition to Karen Chelcun and the rest of the crew at No Stomach for Cancer. Karen has recently been recognized by The Massachusetts General Hospital Cancer Center as part of The One Hundred, as in people and organizations who have made a significant contribution in the fight against cancer.
I admire Karen and her family in their effort to raise awareness for stomach cancer and become a source of information for both HDGC and CDH1, which although so rare, has managed to unite hundreds of people around the world in an effort to educate in the prevention, diagnosis and treatment for people like me who face this disease.
I had thought that my own family, after having lost so many and having discovered this genetic mutation so long ago should have been able to spearhead some kind of monumental effort, but we can't even decide on which night to go see the play at the theatre down the road or agree on a good time to have Thanksgiving dinner, so honestly, how could we have created a network of medical professionals, patients and caregivers the way they have?
Check it out!
http://www.theonehundred.org/honorees/view/no-stomach-for-cancer/
I also recently discovered, via the No Stomach For Cancer website, a series of videos on YouTube concerning CDH1 as it affects members of the Maori people of New Zealand. If you are not aware, the stomach cancer gene was first discovered there by a team of researchers led by Dr. Parry Guilford,who is pretty much my favorite person in the whole wide world that I am not related to. Just a note if you do click the link to see the video(s), they are in both English and Maori, so if you don't understand what is being said, just wait, you will eventually!
http://www.youtube.com/watch?v=E6HlRxSXRCU&feature=youtube_gdata_player
Post Script EDIT: hahahaha I just opened an envelope that came in the mail the other day. I ignored it at first because I didn't recognize the return address. But it turns out to be the records I requested from the hospital that I didn't already have concerning my stay there, most specifically the nurses' notes. It's hilarious. Aside from the fact most of them have terrible handwriting that I can't decipher at a cursory glance, some of the notes are awesome.
"Pleasant and cooperative" O RLY?
"NG tube d/c'd by MD this am" Oh yeah! I know what that means! I remember it well! She pulled that awful vacuum tube out of my nose. Awesome!
"Denies need for pain meds" What was I thinking?
"J-tube clogged"
"J-tube clogged"
"J-tube clogged"
"J-tube still clogged"
"Patient refusing Tube Feed at this time due to discomfort/gas" ...and of course the fact that the tube is CLOGGED and she doesn't want further surgery to unclog it!
"Frustrated by lack of communication between doctors."
I admire Karen and her family in their effort to raise awareness for stomach cancer and become a source of information for both HDGC and CDH1, which although so rare, has managed to unite hundreds of people around the world in an effort to educate in the prevention, diagnosis and treatment for people like me who face this disease.
I had thought that my own family, after having lost so many and having discovered this genetic mutation so long ago should have been able to spearhead some kind of monumental effort, but we can't even decide on which night to go see the play at the theatre down the road or agree on a good time to have Thanksgiving dinner, so honestly, how could we have created a network of medical professionals, patients and caregivers the way they have?
Check it out!
http://www.theonehundred.org/honorees/view/no-stomach-for-cancer/
I also recently discovered, via the No Stomach For Cancer website, a series of videos on YouTube concerning CDH1 as it affects members of the Maori people of New Zealand. If you are not aware, the stomach cancer gene was first discovered there by a team of researchers led by Dr. Parry Guilford,who is pretty much my favorite person in the whole wide world that I am not related to. Just a note if you do click the link to see the video(s), they are in both English and Maori, so if you don't understand what is being said, just wait, you will eventually!
http://www.youtube.com/watch?v=E6HlRxSXRCU&feature=youtube_gdata_player
Post Script EDIT: hahahaha I just opened an envelope that came in the mail the other day. I ignored it at first because I didn't recognize the return address. But it turns out to be the records I requested from the hospital that I didn't already have concerning my stay there, most specifically the nurses' notes. It's hilarious. Aside from the fact most of them have terrible handwriting that I can't decipher at a cursory glance, some of the notes are awesome.
"Pleasant and cooperative" O RLY?
"NG tube d/c'd by MD this am" Oh yeah! I know what that means! I remember it well! She pulled that awful vacuum tube out of my nose. Awesome!
"Denies need for pain meds" What was I thinking?
"J-tube clogged"
"J-tube clogged"
"J-tube clogged"
"J-tube still clogged"
"Patient refusing Tube Feed at this time due to discomfort/gas" ...and of course the fact that the tube is CLOGGED and she doesn't want further surgery to unclog it!
"Frustrated by lack of communication between doctors."
Monday, April 18, 2011
The Hunger Mindgames
I don't experience hunger any more. I think hunger is a sensation produced solely through communication between the stomach and the brain. So no stomach, no hunger. Period. Now if too much time elapses between meals, then I do get a feeling that "I have to eat" but I think this is more a sense that my blood chemistry is becoming imbalanced.
What used to be a funny organ at the bottom of the esophagus saying, "Hey, fill me up!" has become more the feeling of some metabolic function letting me know it's getting kinda bored and needs something to do.
My niece, also a gastrectomy patient, says she does get hungry. But I'm willing to bet this feeling she has isn't true hunger at all. I think people experience similar sensations and interpret them differently.
This could provide a valuable lesson to researchers. Emotional eating is real. When I want to eat something, I'm having a craving, I know that my body doesn't physiologically need it, it isn't real hunger. But I could interpret it as hunger and I would feel compelled to satisfy what I believe is a need. Without a stomach, I can tell the difference. Most people cannot. This leads to overeating and weight gain.
Recently, I flipped through a cooking magazine. One of the articles featured paninis, and had several recipes accompanied by tantalizing photographs. Just the visual stimulus of those pictures alone caused me to want some kind of hot sandwich with meat, sautéed vegetables, an excessive amount of cheese and some kind of sauce or herbal seasoning blend.
Now, this feeling created in my mind is a sensation I would have previously interpreted as hunger and I would have done something to get a sandwich like that, pronto! Even now, just thinking about it while writing this, I'm getting that feeling. I can even feel in my abdomen, a faint gnawing pinch; something that could be hunger, but I know isn't. My brain is just telling me that it is, because it wants an emotional need created by the magazine pictures satisfied.
I know I'm not "hungry" because I'm in the middle of slurping down a 12 ounce smoothie, which is about four ounces more than I usually have. So I know for a fact that my body doesn't need a panini right now, my mind just wants one. And if I were physiologically able to eat a panini right now without becoming ill, I would probably do it. But I know better. Now I can tell the difference.
Another mental aspect of eating that has changed is what I find appealing. I haven't had any kind of fast food since my surgery. Nor do I have any kind of cravings for it, ever. French fries make me gag, as does pretty much anything cooked in a fryer. That greasy, crispy cuisine hailed by some (hungover people) and cursed by others (health-conscious people) makes me ill just thinking about it.
On occasion, I've been able to have Chick-Fil-A, but not the sandwiches, the rolls not work well for me, just a few chicken strips and maybe a waffle fry or two. I actually tried a fast food burger the other day with disastrous results. So I won't be doing that again anytime soon. Pizza continues to be a problem and is even becoming less and less appealing.
Processed food, some would argue it isn't even food anymore, doesn't work very well for me. And it's not to say that prior to my surgery I ate a lot of it, probably less than the average person. But now that kind of food, laden with corn syrup, sodium and processed oils, is so easy to avoid.
The downside of not being able to eat convenience foods, is that if I'm unable to fix myself something, I'm often not eating anything. Thanks to liquid nutrition on those days. It tastes terrible, but at at least provides some needed sustenance.
Signing out now, I have to go eat something. I'm not hungry, remember, I just have to eat!
What used to be a funny organ at the bottom of the esophagus saying, "Hey, fill me up!" has become more the feeling of some metabolic function letting me know it's getting kinda bored and needs something to do.
My niece, also a gastrectomy patient, says she does get hungry. But I'm willing to bet this feeling she has isn't true hunger at all. I think people experience similar sensations and interpret them differently.
This could provide a valuable lesson to researchers. Emotional eating is real. When I want to eat something, I'm having a craving, I know that my body doesn't physiologically need it, it isn't real hunger. But I could interpret it as hunger and I would feel compelled to satisfy what I believe is a need. Without a stomach, I can tell the difference. Most people cannot. This leads to overeating and weight gain.
Recently, I flipped through a cooking magazine. One of the articles featured paninis, and had several recipes accompanied by tantalizing photographs. Just the visual stimulus of those pictures alone caused me to want some kind of hot sandwich with meat, sautéed vegetables, an excessive amount of cheese and some kind of sauce or herbal seasoning blend.
Now, this feeling created in my mind is a sensation I would have previously interpreted as hunger and I would have done something to get a sandwich like that, pronto! Even now, just thinking about it while writing this, I'm getting that feeling. I can even feel in my abdomen, a faint gnawing pinch; something that could be hunger, but I know isn't. My brain is just telling me that it is, because it wants an emotional need created by the magazine pictures satisfied.
I know I'm not "hungry" because I'm in the middle of slurping down a 12 ounce smoothie, which is about four ounces more than I usually have. So I know for a fact that my body doesn't need a panini right now, my mind just wants one. And if I were physiologically able to eat a panini right now without becoming ill, I would probably do it. But I know better. Now I can tell the difference.
Another mental aspect of eating that has changed is what I find appealing. I haven't had any kind of fast food since my surgery. Nor do I have any kind of cravings for it, ever. French fries make me gag, as does pretty much anything cooked in a fryer. That greasy, crispy cuisine hailed by some (hungover people) and cursed by others (health-conscious people) makes me ill just thinking about it.
On occasion, I've been able to have Chick-Fil-A, but not the sandwiches, the rolls not work well for me, just a few chicken strips and maybe a waffle fry or two. I actually tried a fast food burger the other day with disastrous results. So I won't be doing that again anytime soon. Pizza continues to be a problem and is even becoming less and less appealing.
Processed food, some would argue it isn't even food anymore, doesn't work very well for me. And it's not to say that prior to my surgery I ate a lot of it, probably less than the average person. But now that kind of food, laden with corn syrup, sodium and processed oils, is so easy to avoid.
The downside of not being able to eat convenience foods, is that if I'm unable to fix myself something, I'm often not eating anything. Thanks to liquid nutrition on those days. It tastes terrible, but at at least provides some needed sustenance.
Signing out now, I have to go eat something. I'm not hungry, remember, I just have to eat!
Friday, April 8, 2011
Just a Bundle of Nerves
I was amused to a while back to see on The Colbert Report, a reference to the "gut brain." It reminded me of reading the blog of another gastrectomy patient last year:
I had similar feelings very soon after surgery. It's hard to explain, but simply a sense of something being missing, on an emotional level, not just the very real physical aspect of a major organ being gone. Having this surgery can also have some benefits aside from the getting-rid-of-cancer-thing. Just prior to surgery I collected all my doubts, fears, bad habits and general negativity and I metaphorically swallowed them. The idea was they would be in my stomach when it got cut out, ergo, all that bad stuff would go with it. It seemed to work for a while, but somehow some of it has crept back into my psyche. Maybe it all got stuck in the esophagus or was fully reabsorbed before the stomach got cut out. I dunno.
I had read that having a gastrectomy can effect mood, and not just in the obvious way that adapting to life without a stomach can trigger a bit of, say, melancholy. It seems this enteric nervous system can play a role in emotions. It is, after all, a very real part of the nervous system. And it's the science behind such notions as a "gut instinct," and "butterflies in the stomach."
(some sauce for those interested):
http://www.nytimes.com/2005/08/23/health/23gut.html?pagewanted=all
http://www.scholarpedia.org/article/Enteric_nervous_system
http://www.psyking.net/id36.htm
In any case, I think this all speaks to the whole mind-body connection. Alternative approaches to health speak of the subtle bodies. The theory is that there are very real "bodies" connected to our physical one and that imbalances in those bodies can manifest themselves in our physical health. It's said that is how certain inexplicable healing can happen and explains how sheer will seems to make a person stronger, healthier and sometimes able to defy all scientifically medical odds. To me the enteric nervous system represents a real physical aspect of some of this stuff.
Science tells us that stress can adversely affect the body. The evidence shows that a heightened mental state will raise the blood sugar, trigger hormones that will alter metabolic functions. But it fails to tell us why; and is only beginning to figure out that a person simply using the mind can lower stress levels, thereby decreasing any associated risks.
If one can lower their own blood pressure simply by focusing on breathing and calming the mind and then the body, is it really that much of a stretch to believe that the same person can't lower their risk for getting a cold by a conscious effort to direct their immune system to attack and neutralize an invading viral infection?
Don't get me wrong, I don't think, by any stretch of the imagination, that a person can meditate away a stage IV cancer or stop the hemorrhaging of a severed artery by visualizing it magically regenerating. I just think that focused will plays a very large role in our overall health and the power of the mind should never be discounted when it comes to the healing of the body.
If the gut brain is associated with the entirety of the gastrointestinal tract, I would think that the stomach would be like it's cerebral cortex. So it's no wonder that without a stomach and the nerves that accompany it, one's second brain can be sent into a tailspin. Unlike the brain in our head though, the body can function without a stomach. It's just a matter of reconnecting the disjoined parts. The physical parts were rejoined as part of surgery, but the mental and emotional aspects seem to take much longer to heal. This is ongoing and just part of the process.
"So why don’t I feel normal? I know it’s still early, but I thought that once I started doing normal things – eating, working, going out – that I would feel like I was getting into my routine, into my life, back to normal. But I don’t, I feel uncomfortable and unsettled. I have been working so hard to get my body readjusted and healthy again, I wonder if emotionally I’m just way far behind. Some of it I know is thinking about Dad and starting to cope, in earnest, with losing him. But it’s more than that – I know I didn’t have brain surgery, but I honestly feel (and this sounds ridiculous in my head as I am typing) – I feel like a part of my personality was in my stomach. And that part got cut out too, and now I don’t feel like me. I’m different, it’s different, everything has changed. And boy I wish the pathologist could find whatever I lost on one of his slides, but I don’t think it’s quite that easy." -Brian Chelcun (http://www.caringbridge.org/visit/bchelcun)
I had similar feelings very soon after surgery. It's hard to explain, but simply a sense of something being missing, on an emotional level, not just the very real physical aspect of a major organ being gone. Having this surgery can also have some benefits aside from the getting-rid-of-cancer-thing. Just prior to surgery I collected all my doubts, fears, bad habits and general negativity and I metaphorically swallowed them. The idea was they would be in my stomach when it got cut out, ergo, all that bad stuff would go with it. It seemed to work for a while, but somehow some of it has crept back into my psyche. Maybe it all got stuck in the esophagus or was fully reabsorbed before the stomach got cut out. I dunno.
I had read that having a gastrectomy can effect mood, and not just in the obvious way that adapting to life without a stomach can trigger a bit of, say, melancholy. It seems this enteric nervous system can play a role in emotions. It is, after all, a very real part of the nervous system. And it's the science behind such notions as a "gut instinct," and "butterflies in the stomach."
(some sauce for those interested):
http://www.nytimes.com/2005/08/23/health/23gut.html?pagewanted=all
http://www.scholarpedia.org/article/Enteric_nervous_system
http://www.psyking.net/id36.htm
In any case, I think this all speaks to the whole mind-body connection. Alternative approaches to health speak of the subtle bodies. The theory is that there are very real "bodies" connected to our physical one and that imbalances in those bodies can manifest themselves in our physical health. It's said that is how certain inexplicable healing can happen and explains how sheer will seems to make a person stronger, healthier and sometimes able to defy all scientifically medical odds. To me the enteric nervous system represents a real physical aspect of some of this stuff.
Science tells us that stress can adversely affect the body. The evidence shows that a heightened mental state will raise the blood sugar, trigger hormones that will alter metabolic functions. But it fails to tell us why; and is only beginning to figure out that a person simply using the mind can lower stress levels, thereby decreasing any associated risks.
If one can lower their own blood pressure simply by focusing on breathing and calming the mind and then the body, is it really that much of a stretch to believe that the same person can't lower their risk for getting a cold by a conscious effort to direct their immune system to attack and neutralize an invading viral infection?
Don't get me wrong, I don't think, by any stretch of the imagination, that a person can meditate away a stage IV cancer or stop the hemorrhaging of a severed artery by visualizing it magically regenerating. I just think that focused will plays a very large role in our overall health and the power of the mind should never be discounted when it comes to the healing of the body.
If the gut brain is associated with the entirety of the gastrointestinal tract, I would think that the stomach would be like it's cerebral cortex. So it's no wonder that without a stomach and the nerves that accompany it, one's second brain can be sent into a tailspin. Unlike the brain in our head though, the body can function without a stomach. It's just a matter of reconnecting the disjoined parts. The physical parts were rejoined as part of surgery, but the mental and emotional aspects seem to take much longer to heal. This is ongoing and just part of the process.
Friday, February 11, 2011
Sixth Month Update ... Seven Months Later
Dispensing with the obligatory six months post op update:
I finally made an appointment with my surgeon and saw her on the 2nd of February. I only had one complaint, that being a weird sensation on my left side right inside the bottom of my rib cage. Lately, about 15-30 minutes after I eat, I'll get the sensation of food passing through something there. Sometimes I just feel or hear it, other times it's quite painful. My main concern is that nothing should be there. I've been really paranoid about my intestines just kinda floating around in my body cavity, but the doc previously said that won't happen so now I'm just wondering what it could be. She offered to try to get an xray after i eat but since it happens to quickly and I didn't feel like getting an x ray, we let it slide for now. She didn't seem that concerned and since it hasn't really been happening anymore, then neither am I. (Ha! Of course it started happening now, as I write this. Typical!)
The other thing is that I thought she would get mad at my weight loss. It's said that after a total gastrectomy, a person will loose 25-30% of their body weight. Lucky for me, I'd been carrying an extra 50 or so pounds around since the birth of my son. See, I guess I just instinctively knew I would need it at some point so I held on to it. (Kinda like those stacks of plastic Miller Lite Halloween cups and nice-sized sturdy boxes in the basement, right? Oh wait, no, that's different!). I had the weight to lose, I even have some still in reserve, so I'm not finding a problem with it.
But I hadn't gotten on the scale for a month or two and then one day in late January, I got on it and it showed me almost 30 pounds lighter than I had been in the fall. I thought it was somewhat drastic but probable as well. But then the next day when I got on, the first time it had me ANOTHER nine pounds lighter. Yeah, from just the day before. Realizing this was an error, I got on again, + 7 lbs. Again, - 5 lbs. Obviously, my scale is busted. So when I went into the doctor I really had no idea how much I weighed.
Now, previously, when being weighed at the doctor I would take off my shoes, maybe my socks too, empty the change in my pockets, then ask the nurse how much makeup weighs and could she deduct some from the total cause I'm wearing a lot of eye shadow today. This time I got on that thing wearing my 5 pound winter boots after slipping my keys in my pants pocket and glancing around the room for any heavy objects I could hide in my hands. Anyway it read more than I thought it would, so weight loss wouldn't be an issue.
Now it's been tradition in my family for someone to have a gastrectomy, due to a positive CDH1 mutation or stomach cancer diagnosis, every fall since 2006. I went with a summer surgery because thought it would be nice to spend 10 days in an air conditioned hospital. Well, I have a sister who is totally breaking that tradition and having it done way early. After all, this isn't the kind of thing that should be put off. So next Wednesday I'll be at the hospital for a gastrectomy again. Only this time I'm not the patient. I'll be the advocate and the supporter. I look forward to apologizing to the nursing staff and educating a new rotation of med students. Anyone out there with prayers, positive vibes and healing thoughts left over after my surgery can send them down to 10th & Chestnut in Philly on February 16th. Thanks!
I finally made an appointment with my surgeon and saw her on the 2nd of February. I only had one complaint, that being a weird sensation on my left side right inside the bottom of my rib cage. Lately, about 15-30 minutes after I eat, I'll get the sensation of food passing through something there. Sometimes I just feel or hear it, other times it's quite painful. My main concern is that nothing should be there. I've been really paranoid about my intestines just kinda floating around in my body cavity, but the doc previously said that won't happen so now I'm just wondering what it could be. She offered to try to get an xray after i eat but since it happens to quickly and I didn't feel like getting an x ray, we let it slide for now. She didn't seem that concerned and since it hasn't really been happening anymore, then neither am I. (Ha! Of course it started happening now, as I write this. Typical!)
The other thing is that I thought she would get mad at my weight loss. It's said that after a total gastrectomy, a person will loose 25-30% of their body weight. Lucky for me, I'd been carrying an extra 50 or so pounds around since the birth of my son. See, I guess I just instinctively knew I would need it at some point so I held on to it. (Kinda like those stacks of plastic Miller Lite Halloween cups and nice-sized sturdy boxes in the basement, right? Oh wait, no, that's different!). I had the weight to lose, I even have some still in reserve, so I'm not finding a problem with it.
But I hadn't gotten on the scale for a month or two and then one day in late January, I got on it and it showed me almost 30 pounds lighter than I had been in the fall. I thought it was somewhat drastic but probable as well. But then the next day when I got on, the first time it had me ANOTHER nine pounds lighter. Yeah, from just the day before. Realizing this was an error, I got on again, + 7 lbs. Again, - 5 lbs. Obviously, my scale is busted. So when I went into the doctor I really had no idea how much I weighed.
Now, previously, when being weighed at the doctor I would take off my shoes, maybe my socks too, empty the change in my pockets, then ask the nurse how much makeup weighs and could she deduct some from the total cause I'm wearing a lot of eye shadow today. This time I got on that thing wearing my 5 pound winter boots after slipping my keys in my pants pocket and glancing around the room for any heavy objects I could hide in my hands. Anyway it read more than I thought it would, so weight loss wouldn't be an issue.
Now it's been tradition in my family for someone to have a gastrectomy, due to a positive CDH1 mutation or stomach cancer diagnosis, every fall since 2006. I went with a summer surgery because thought it would be nice to spend 10 days in an air conditioned hospital. Well, I have a sister who is totally breaking that tradition and having it done way early. After all, this isn't the kind of thing that should be put off. So next Wednesday I'll be at the hospital for a gastrectomy again. Only this time I'm not the patient. I'll be the advocate and the supporter. I look forward to apologizing to the nursing staff and educating a new rotation of med students. Anyone out there with prayers, positive vibes and healing thoughts left over after my surgery can send them down to 10th & Chestnut in Philly on February 16th. Thanks!
Thursday, January 20, 2011
A Different Kind of Loss
I've lost something important. It came upon me when I was still in the hospital; after I got disconnected from all the wiring and tubes and I began to see a glimmer of my new life. I had a new lease on life, literally. A second chance after beating a cancer that could have killed me by now. No longer would I be content to let the world spin around with myself as a prop. I would be taking the bull by the horns, pulling myself up by the bootstraps and breaking free (of cliched metaphors, one may hope)!
By the time I came home I literally felt like a new person. I was not the same; and not just in the physical sense that my stomach was gone and I can trace my finger over a scar that reminds me of these changes. But in a very real way that I was motivated to be able to do anything. I don't know how to describe it, but it was like any doubts and fears I had were gone, taken out of my body with the stomach and diseased cells within it. This person was so on top of things. I had clear purpose and determination. My goals became neatly divided into their respective short and long term columns. Productivity and success were all I could see in my future.
Something happened along the way. I lost it. I find myself staring at the same pots in the sink, the same pile of laundry and the same tabletop of clutter, compounded daily so as to send the family to different corners of the house to eat their meals. This is not the way it was supposed to be. I was supposed to be on top of everything. There would be no time for clutter, neither in my head nor in my environment.
I should be working right now, if not selling my soul to the corporate grind and slaving in a cube under fluorescent lights, then earning a respectable income with my words. Have you read the Internet lately? It is in desperate need of a proofreader! Why do I have to be so selective in the opportunities I choose to pursue? But that's another story.
I have to regain the momentum I had five months ago. Maybe I need to reflect on all that Napoleon Hill motivation or something. I feel stuck in the same rut of procrastination and ennui that led me to let an entire decade pass by without doing anything of note. This is a time when I want to be productive and moving forward. There's a mind-set I possessed shortly after my surgery that had me feeling a palpable determination; a definite purpose. And it involved a whole lot more than watching bad television and making sarcastic Facebook comments.
Fondly looking toward the future,
Terri
By the time I came home I literally felt like a new person. I was not the same; and not just in the physical sense that my stomach was gone and I can trace my finger over a scar that reminds me of these changes. But in a very real way that I was motivated to be able to do anything. I don't know how to describe it, but it was like any doubts and fears I had were gone, taken out of my body with the stomach and diseased cells within it. This person was so on top of things. I had clear purpose and determination. My goals became neatly divided into their respective short and long term columns. Productivity and success were all I could see in my future.
Something happened along the way. I lost it. I find myself staring at the same pots in the sink, the same pile of laundry and the same tabletop of clutter, compounded daily so as to send the family to different corners of the house to eat their meals. This is not the way it was supposed to be. I was supposed to be on top of everything. There would be no time for clutter, neither in my head nor in my environment.
I should be working right now, if not selling my soul to the corporate grind and slaving in a cube under fluorescent lights, then earning a respectable income with my words. Have you read the Internet lately? It is in desperate need of a proofreader! Why do I have to be so selective in the opportunities I choose to pursue? But that's another story.
I have to regain the momentum I had five months ago. Maybe I need to reflect on all that Napoleon Hill motivation or something. I feel stuck in the same rut of procrastination and ennui that led me to let an entire decade pass by without doing anything of note. This is a time when I want to be productive and moving forward. There's a mind-set I possessed shortly after my surgery that had me feeling a palpable determination; a definite purpose. And it involved a whole lot more than watching bad television and making sarcastic Facebook comments.
Fondly looking toward the future,
Terri
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