It began as just a few pangs and flashes here and there throughout the day. But it's slowly growing into an all-consuming fear that I just should not have done this. At least not yet. This is the stunning and sometimes delusional feeling of regret.
My feelings about Total Gastrectomy(TG) have run the gamut since I was first made aware of the treatment about five or so years ago. My sister had been looking into options for people with the CDH1 gene mutation and had stated not only her intention to have the genetic test but to have her stomach cut out of her body even if screening indicated it was perfectly healthy. I thought she was 100% certifiably insane. Surely there must be other options?! Even at the time when my sister was planning and going through her surgery, my feelings for myself were that I would never get my stomach removed. Ever.
Depending on the screenings and pathology that occur prior to surgery, TG can be considered prophylactic, in another word preventative, if there is no evidence of cancerous cells -or- if carcinoma is found in the stomach and then it is removed and there are no signs of growth to the lymph nodes or other organs, it is considered curative. However in many cases, patients who are seemingly getting a prophylactic TG, find out after the fact that their surgery was indeed curative as the pathology report of the stomach often reveals tiny pockets of cancer cells.
There's no telling how long those cells would take to multiply and spread around; it could take years, it could take decades. This is why doctors are unable to advise patients on the timing of a TG. The answer always seems to "as soon as possible."
Obviously in my case, the stomach was not perfectly healthy. A biopsy of the gastric antrum showed signet ring carcinoma. According to the surgeon the post operative pathology report showed this was the only area with cancer cells. So maybe I could have waited.
Maybe I could have planned better, mentally, physically, financially. Maybe those signet ring cells would have just sat there doing nothing for 30 years and I could have gone on to live as I always have, with a stomach. Maybe I could have had time to climb a mountain, or win Survivor, or chug a few more Irish Car Bombs.
Barely a year ago, before I had the test, I remember thinking that even if I had the gene, I was going to be the one to get rid of it without surgery. How did I forget that? How did I forget that I couldn't fathom having my stomach removed? How did I lose sight of the fact that I was going to be the one to beat the odds? I was going to be a miracle. The researchers would be flying me all over the world to study me and figure out what I did to keep the cancer at bay.
I was going to pray, meditate, visit the most powerful shaman, astrally journey to the masters of healing on the fifth dimension, channel the energy of the universe, or simply will my body to reject this cancer, do what ever any number of crackpots suggest it would take, but I absolutely positively would not succumb to having my stomach taken out. What happened to that positive thinking? How did I forget that I was going to use any and all methods to cure myself other than surgical removal of the stomach?
I obviously acted impulsively. I jumped the gun and didn't think things through. If I had, I might be playing with the kids in the pool right now, or we'd be hiking at the park, or I'd be gainfully employed. I certainly wouldn't be sitting here, waiting for incisions to heal and the pain of digestion to subside so I can make an attempt to rest.
I just can't stop thinking that maybe I did this too soon.
Wednesday, July 28, 2010
Tuesday, July 27, 2010
Two Steps Forward; One Step Back
Ingesting just one wrong food can ruin your whole day. No split-pea soup for me anytime soon thank you. When I'm having a good day it's easy to lose focus and start to believe that this isn't the long, slow process that it is. A good day is just that, better than average, and certainly not to be be expected.
Yesterday I sat outside and the weather was perfect. It's hard to believe it's late July, with the mild temperature and slight breeze.
I've probably spent less than one total hour outside over the past two weeks, and naturally, that's only been in the last few days since I got out of the hospital. Although from what I gather I should be thankful I didn't have to go outside during what was a typical Mid-Atlantic wave of heat and humidity. Especially having been in the city. So it's nice to finally get some fresh air and a little bit of sun on my head.
Waking up and eating breakfast is so tiring that I often need a nap shortly after breakfast. I found my head bobbing the way it used to when I sat in the back of Geometry class in high school. Unable to get in a comfortable sleeping position outside, I went in but that nap never happened. I tried for three hours to snooze and really felt so tired but just couldn't manage to fall asleep. Mom came over to help out and I got to thinking that I wanted to go to the store to get a few things.
I really needed to check out some items, read labels, compare nutrients, etc, to find some food stuffs that will work for me. I sometimes find myself pacing around my little house in order to get my digestive tract (and anything in in it) moving. So it's not unusual for me for me to be walking around for 1/2 hour, sometimes longer. I figured that with all the laps through my house that I do, I could stand walking around Giant for a little bit. Or I could zoom around in one of those motorized carts they have for people like me.
Well you all know how "just running in to the grocery store for a few things" works out, right? This was no different. Complete with criss crossing the store a few times due to forgetfulness and general idiocy. And my poor mother trying to keep up with me darting back and forth in the hoveround cart. Two hours later, we walked out of the store. I don't know what I was thinking. But I'm a little less worried about getting at least some basic nutrition in my body everyday. And I'm hoping for a lot more rest today!
Yesterday I sat outside and the weather was perfect. It's hard to believe it's late July, with the mild temperature and slight breeze.
I've probably spent less than one total hour outside over the past two weeks, and naturally, that's only been in the last few days since I got out of the hospital. Although from what I gather I should be thankful I didn't have to go outside during what was a typical Mid-Atlantic wave of heat and humidity. Especially having been in the city. So it's nice to finally get some fresh air and a little bit of sun on my head.
Waking up and eating breakfast is so tiring that I often need a nap shortly after breakfast. I found my head bobbing the way it used to when I sat in the back of Geometry class in high school. Unable to get in a comfortable sleeping position outside, I went in but that nap never happened. I tried for three hours to snooze and really felt so tired but just couldn't manage to fall asleep. Mom came over to help out and I got to thinking that I wanted to go to the store to get a few things.
I really needed to check out some items, read labels, compare nutrients, etc, to find some food stuffs that will work for me. I sometimes find myself pacing around my little house in order to get my digestive tract (and anything in in it) moving. So it's not unusual for me for me to be walking around for 1/2 hour, sometimes longer. I figured that with all the laps through my house that I do, I could stand walking around Giant for a little bit. Or I could zoom around in one of those motorized carts they have for people like me.
Well you all know how "just running in to the grocery store for a few things" works out, right? This was no different. Complete with criss crossing the store a few times due to forgetfulness and general idiocy. And my poor mother trying to keep up with me darting back and forth in the hoveround cart. Two hours later, we walked out of the store. I don't know what I was thinking. But I'm a little less worried about getting at least some basic nutrition in my body everyday. And I'm hoping for a lot more rest today!
Saturday, July 24, 2010
Baby Steps
Over the past week, I've often found myself drawing analogies
of the body relearning to eat and process food being akin to that of an infant:
In the hospital I constantly referred to the liquid feeding tube nutrition as "formula."
The natural progression for patients after a TG is obviously to start out eating soft foods and progress to solids.
The other night as I began to eat my dinner, I made a startling observation. I had a very small portion in a little bowl of half a hamburger and about 1 oz. Of cheddar cheese both cut up into little pieces. I stared at this portion of tiny bites for a minute or two and realized that I'm eating like a toddler.
I had a craving for pudding last night and was discussing with my husband what to look for on the labels. I abhor Splenda and other artificial sweeteners, so I'm looking for something with real sugar, just not a lot of it. While discussing the differences between such marketing labels such as "unsweetened" and "no sugar added, " it seemed like a lot of work for Dan to just pick up some pudding. I got to the point where I almost told him to just get me toddler food pudding.
This surgery really is such a gross violation to the body, it's a wonder that it responds positively all. Think about it, the esophagus and upper intestine have their mutual friend, the stomach, literally sliced away from their lives and then the two are violently brought together and told to get along. Nicely. Forever.
Then the Small Intestine is told it has to do work it never signed up for and for which it will never be properly compensated. It's like you work at the fish-breading factory and for years you've been getting these nice filets to dip in crumbs. Suddenly the conveyor belt is spitting out whole fish and now you have to completely gut and clean the fish before you bread them. And you have no new tools or more time in which to do it.
Quite a miracle of biology.
And this is why I have such peaks and valleys. It's a long road.
of the body relearning to eat and process food being akin to that of an infant:
In the hospital I constantly referred to the liquid feeding tube nutrition as "formula."
The natural progression for patients after a TG is obviously to start out eating soft foods and progress to solids.
The other night as I began to eat my dinner, I made a startling observation. I had a very small portion in a little bowl of half a hamburger and about 1 oz. Of cheddar cheese both cut up into little pieces. I stared at this portion of tiny bites for a minute or two and realized that I'm eating like a toddler.
I had a craving for pudding last night and was discussing with my husband what to look for on the labels. I abhor Splenda and other artificial sweeteners, so I'm looking for something with real sugar, just not a lot of it. While discussing the differences between such marketing labels such as "unsweetened" and "no sugar added, " it seemed like a lot of work for Dan to just pick up some pudding. I got to the point where I almost told him to just get me toddler food pudding.
This surgery really is such a gross violation to the body, it's a wonder that it responds positively all. Think about it, the esophagus and upper intestine have their mutual friend, the stomach, literally sliced away from their lives and then the two are violently brought together and told to get along. Nicely. Forever.
Then the Small Intestine is told it has to do work it never signed up for and for which it will never be properly compensated. It's like you work at the fish-breading factory and for years you've been getting these nice filets to dip in crumbs. Suddenly the conveyor belt is spitting out whole fish and now you have to completely gut and clean the fish before you bread them. And you have no new tools or more time in which to do it.
Quite a miracle of biology.
And this is why I have such peaks and valleys. It's a long road.
Thursday, July 22, 2010
Forgot to Mention . . .
When I saw my surgeon on Monday she had other news that I neglected to pass along. There was no evidence of the cancer having spread; so that means no chemo, no radiation. Just as planned, they extracted the entire stomach, the omentum and a few local lymph nodes. The only place the pathologist found cancer post-op, was a tiny little place in the stomach just where the endoscopy had detected signet ring cells back in the Spring. It dawned on me today that many people might be thinking that I'm facing the devastating standard cancer treatments many patients are forced to endure. Well, thank the lord, there's nothing of the sort needed. Are you kidding, I could never deal with that!
I knew prior to surgery that it was unlikely that the cancer had spread. The possibility certainly existed, but I chose not to entertain it. I apologize to any who may have been concerned about that aspect of my illness and surgery. It may have been nice to get a confirmation earlier than now. I don't mean to be so cavalier about it, I just hadn't been thinking along those lines at all.
In other news, I finally watched that episode of Grey's Anatomy that has a storyline of a family dealing with this condition. I'm a little ambivalent about it. On one hand, I almost got chills when I heard the words "Hereditary Diffuse Gastric Cancer" and "CDH1 gene mutation" uttered by characters on a major prime time hit network TV show (exposure, exposure, exposure) but then hearing all the inaccuracies kind gave me a sick feeling in the pit of my, um . . . small intestine? Well that doesn't exactly roll off the tongue now does it?
In any case, I recall my sister Rose addressing this in her blog so I will just steal her words when it comes to this show:
And that's all I have to say about that!
First full day home presented some challenges. It's really hard to get in and out of bed without something to hold onto! Mom came over to help and was here all afternoon though. I think I'll feel better when all the edema finally subsides and I gain some flexibility back. Eating is a chore. This is all to be expected.
There are milestones in my head; one year being the best one, but it's so far away so I start to break it down. Four months will be good; two months I can probably go back to work, though I'm pretty sure my bar tending days are completely behind me. One month, the major effects of general surgery will be finished. Two weeks, I should have a lot of strength back. One week, I should be eating better. But for now, I'm almost finished with today, and that's a major accomplishment!
I knew prior to surgery that it was unlikely that the cancer had spread. The possibility certainly existed, but I chose not to entertain it. I apologize to any who may have been concerned about that aspect of my illness and surgery. It may have been nice to get a confirmation earlier than now. I don't mean to be so cavalier about it, I just hadn't been thinking along those lines at all.
In other news, I finally watched that episode of Grey's Anatomy that has a storyline of a family dealing with this condition. I'm a little ambivalent about it. On one hand, I almost got chills when I heard the words "Hereditary Diffuse Gastric Cancer" and "CDH1 gene mutation" uttered by characters on a major prime time hit network TV show (exposure, exposure, exposure) but then hearing all the inaccuracies kind gave me a sick feeling in the pit of my, um . . . small intestine? Well that doesn't exactly roll off the tongue now does it?
In any case, I recall my sister Rose addressing this in her blog so I will just steal her words when it comes to this show:
On the one hand, I think it’s great that a family dealing with HDGC was introduced on such a popular prime-time television
show. Undoubtedly, this exposure will help to raise awareness of this little-known and very rare syndrome. And they did an excellent job of
portraying some of the issues that such a family faces, such as
GRIEF and the loss of family members
FEAR and deciding whether or not to have the surgery
On the other hand, there were many factual errors, such as
-the surgeons felt a “mass” in Tricia’s stomach when they were taking it out — As you probably know, with diffuse stomach cancer, there is no MASS since the cells are scattered throughout the lining of the stomach.
-the doctors told the family that it was a “highly aggressive” form of cancer and that “tumors grow quickly” — No one knows how long my father had cancer in his stomach, but I’d be willing to bet that it was there, hiding, for YEARS before it was found (too late). This cancer is not “aggressive”… it is STEALTHY (and therefore, all the more deadly).
-they mention “dumping syndrome” but they don’t explain what it is
-the list of possible side effects and complications from prophylactic gastrectomy includes ANAL LEAKAGE — I have done a lot of reading about HDGC, and I don’t recall EVER hearing that anal leakage is a possible side effect of having your stomach removed!
And that's all I have to say about that!
First full day home presented some challenges. It's really hard to get in and out of bed without something to hold onto! Mom came over to help and was here all afternoon though. I think I'll feel better when all the edema finally subsides and I gain some flexibility back. Eating is a chore. This is all to be expected.
There are milestones in my head; one year being the best one, but it's so far away so I start to break it down. Four months will be good; two months I can probably go back to work, though I'm pretty sure my bar tending days are completely behind me. One month, the major effects of general surgery will be finished. Two weeks, I should have a lot of strength back. One week, I should be eating better. But for now, I'm almost finished with today, and that's a major accomplishment!
Wednesday, July 21, 2010
Home at Last
A full two days after I expected to be let go, they finally discharged me. My surgeon even removed the dreaded malfunctioning feeding tube. The concern is that when you put one of those things in, it takes a while for healing to occur around it and you need that essential "scarring" to keep fluids and such from escaping the intestine into the body cavity thus becoming septic. That's not pretty at all.
At first, she actually had me convinced to keep it in for another week. Then she was taking a look at it, explaining how she would take the outer part out and just leave the "port" if you will there in the skin. She said she would just stitch up the part so there's no way for anything to get in from the outside.
"Or we can just take it out now," she said.
"What?" I couldn't believe it. " No! You said-"
"Nah, let's just take it out now. How bout this, I'll take it out now but I get you for one more day and you can go home tomorrow."
"I'd rather just keep it in then."
She eventually pulled it out AND let me go.
So here I am in my own bed and really happy about it. There's a bit of apprehension for no longer having a nursing staff on the other end of a button next to my bed. It's nice to have that assurance in my head. This is a difficult road to take but every day will become a bit easier.
And again, I appreciate the support of all my family and friends, old and new, near and far. Every time I start to get down or weepy or feel myself falling into a full-blown panic attack, I think of all the people who are pulling for me and I draw on that strength to recharge my own,
At first, she actually had me convinced to keep it in for another week. Then she was taking a look at it, explaining how she would take the outer part out and just leave the "port" if you will there in the skin. She said she would just stitch up the part so there's no way for anything to get in from the outside.
"Or we can just take it out now," she said.
"What?" I couldn't believe it. " No! You said-"
"Nah, let's just take it out now. How bout this, I'll take it out now but I get you for one more day and you can go home tomorrow."
"I'd rather just keep it in then."
She eventually pulled it out AND let me go.
So here I am in my own bed and really happy about it. There's a bit of apprehension for no longer having a nursing staff on the other end of a button next to my bed. It's nice to have that assurance in my head. This is a difficult road to take but every day will become a bit easier.
And again, I appreciate the support of all my family and friends, old and new, near and far. Every time I start to get down or weepy or feel myself falling into a full-blown panic attack, I think of all the people who are pulling for me and I draw on that strength to recharge my own,
Monday, July 19, 2010
My Hero, The Surgeon, Returns to Save the Day
After five days of the worst physical discomfort I could imagine and then about 36 hours of banging my head against the wall with near useless protestations, my doctor returned and started to set everything straight. When she came in on Thursday afternoon to pull out my NG tube, she informed me she had to leave town for the weekend due to a family medical emergency I didn't think much of it at the time. But the weekend went very poorly for me.
Dr. C. Swooped in at about noon yesterday with an array of questions:
"Why are you still on a feeding tube?"
"Why are you still on a liquid diet?"
"Why are you still in this room?"
Jeez, all the same questions I had been having for days.
She immediately switched me to a regular diet and ordered my transfer off of the Surgical ICU.
The feeding tube continues to be a struggle.
Now, I believe in teaching hospitals and they play an important role in the instruction of the next generation of medical whiz kids. I have a Surgical "team" of med students, Interns and Residents, who as part of their education and training are discussing my case and trying to figure out how to proceed with my treatment and recovery. I am the third member of my family to have this surgery at this hospital. I would think they might have a few things figured out by now. Can't they put an extra "addendum" to their text books regarding TG for HDGC.
At about 4pm yesterday my feeding tube, (the one I don't need or want, the one my surgeon told me I probably don't need) got
clogged. Various methods were used to try to dislodge the obstruction to no avail. I was finally moved to my new room #1312! (Hey, there were a bunch of cool chicks living at that number on Rodman Street about 20 years ago weren't there?!)
The new nurse there tried to unclog it. A Resident there tried to unclog it. I repeadedly told everyone involved, FROM THE MOMEMNT IT CLOGGED, that I'd rather have it just taken out. They seem determined to get this fixed through.
Dr. C. Swooped in at about noon yesterday with an array of questions:
"Why are you still on a feeding tube?"
"Why are you still on a liquid diet?"
"Why are you still in this room?"
Jeez, all the same questions I had been having for days.
She immediately switched me to a regular diet and ordered my transfer off of the Surgical ICU.
The feeding tube continues to be a struggle.
Now, I believe in teaching hospitals and they play an important role in the instruction of the next generation of medical whiz kids. I have a Surgical "team" of med students, Interns and Residents, who as part of their education and training are discussing my case and trying to figure out how to proceed with my treatment and recovery. I am the third member of my family to have this surgery at this hospital. I would think they might have a few things figured out by now. Can't they put an extra "addendum" to their text books regarding TG for HDGC.
At about 4pm yesterday my feeding tube, (the one I don't need or want, the one my surgeon told me I probably don't need) got
clogged. Various methods were used to try to dislodge the obstruction to no avail. I was finally moved to my new room #1312! (Hey, there were a bunch of cool chicks living at that number on Rodman Street about 20 years ago weren't there?!)
The new nurse there tried to unclog it. A Resident there tried to unclog it. I repeadedly told everyone involved, FROM THE MOMEMNT IT CLOGGED, that I'd rather have it just taken out. They seem determined to get this fixed through.
Arguing with the Residents; Must be Feeling Better
Wow, that was totally unexpected! By far the worst five or so days of my life ever. Had no idea, despite research and being given first-hand accounts, just awful those first few days would be.
Thanks to everyone for their well-wishes, positive vibes and good old-fashoined prayers. They certainly helped get me through the surgery. Now I'd like just a few more please, to get me through at least the next few weeks. Hope I'm not being greedy. I just used everything up getting from Tuesday to Saturday. I'll tell you, all the remarks about be being so strong and courageous went right out the window about Thursday. I felt like the biggest fraud.
"But I can't DO this," I wailed to Dan.
"Just press the botton, hon." A reference to my on demand pain medication.
Saturday night was the first time I had any more than 40-60 minutes of sleep at any given time. So I woke up Sunday feeling rather stiff and groggy. I've been having issues with the tube feedings and on Saturday I got them to put a hold on them. The nurse had told me that one of the Interns was going to come talk to me about the importance and necessity of the tube feedings. When she got to my room, with her textbook copy of the jejunal tube procedure, she asked why I needed a feeding tube after my surgery. At first I thought she was poising herself for a little lecture and then I realized that she really didn't know. "Wait!? Are you asking me to formulate your main premise for you? Because clearly this is an arguement you can't win."
Well that's where I am right now. I want three things:
the feeding tube removed
FOOD
and to be at home!
I'll let you know how that works out
Thanks to everyone for their well-wishes, positive vibes and good old-fashoined prayers. They certainly helped get me through the surgery. Now I'd like just a few more please, to get me through at least the next few weeks. Hope I'm not being greedy. I just used everything up getting from Tuesday to Saturday. I'll tell you, all the remarks about be being so strong and courageous went right out the window about Thursday. I felt like the biggest fraud.
"But I can't DO this," I wailed to Dan.
"Just press the botton, hon." A reference to my on demand pain medication.
Saturday night was the first time I had any more than 40-60 minutes of sleep at any given time. So I woke up Sunday feeling rather stiff and groggy. I've been having issues with the tube feedings and on Saturday I got them to put a hold on them. The nurse had told me that one of the Interns was going to come talk to me about the importance and necessity of the tube feedings. When she got to my room, with her textbook copy of the jejunal tube procedure, she asked why I needed a feeding tube after my surgery. At first I thought she was poising herself for a little lecture and then I realized that she really didn't know. "Wait!? Are you asking me to formulate your main premise for you? Because clearly this is an arguement you can't win."
Well that's where I am right now. I want three things:
the feeding tube removed
FOOD
and to be at home!
I'll let you know how that works out
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