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
Sunday, July 18, 2010
...and more progress
On Friday, the docs gave the OK for Terri to start on a clear liquid diet... broth, tea, jello, juice, etc. I talked to her on the phone today, and she sounded really good! Dan brought the kids down to the hospital for a visit with her today. I'm sure she was glad to see them... and I KNOW they were glad to see her!
Hopefully, she'll get discharged soon.
Hopefully, she'll get discharged soon.
Thursday, July 15, 2010
Progress
Terri was very glad they took out the NG tube this morning. By the way, NG stands for Nasal-Gastric (if you need to know more, look it up... I'm not going to get TOO graphic here... suffice it to say that the tube REALLY irritates your throat).
So NOW her main complaint is GAS pain. The problem is, the gas is not just in the digestive tract (which can be expelled relatively easily in one of two directions ;) The air is trapped in her BODY CAVITY and the only way for it to GO AWAY is for her to get out of bed and WALK... and/or to do other movements (shoulder rolls, deep breathing, etc.) to help break up the air, and eventually it will exit through her body tissues.
You might wonder WHY there is air in her body cavity... well, (according to Wikipedia) when surgery is done laparoscopically, "The abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas. This elevates the abdominal wall above the internal organs like a dome to create a working and viewing space. CO2 is used because it is common to the human body and can be absorbed by tissue and removed by the respiratory system. "
Even when you have traditional surgery to remove your stomach (with one large incision, like I had), air gets trapped in your abdomen after the incision is closed. And the pain can be horrible. It wasn't easy, but I forced myself to walk and move around as much as I could after my surgery to help break up that air/gas so that it would "go away" sooner.
Tomorrow, Terri is scheduled to have the Barium swallow test, which will (hopefully) verify that there are no leaks in her new plumbing... if that goes well, then she can start drinking/eating. Fingers crossed!
So NOW her main complaint is GAS pain. The problem is, the gas is not just in the digestive tract (which can be expelled relatively easily in one of two directions ;) The air is trapped in her BODY CAVITY and the only way for it to GO AWAY is for her to get out of bed and WALK... and/or to do other movements (shoulder rolls, deep breathing, etc.) to help break up the air, and eventually it will exit through her body tissues.
You might wonder WHY there is air in her body cavity... well, (according to Wikipedia) when surgery is done laparoscopically, "The abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas. This elevates the abdominal wall above the internal organs like a dome to create a working and viewing space. CO2 is used because it is common to the human body and can be absorbed by tissue and removed by the respiratory system. "
Even when you have traditional surgery to remove your stomach (with one large incision, like I had), air gets trapped in your abdomen after the incision is closed. And the pain can be horrible. It wasn't easy, but I forced myself to walk and move around as much as I could after my surgery to help break up that air/gas so that it would "go away" sooner.
Tomorrow, Terri is scheduled to have the Barium swallow test, which will (hopefully) verify that there are no leaks in her new plumbing... if that goes well, then she can start drinking/eating. Fingers crossed!
Tuesday, July 13, 2010
Out of bed
I just talked to Dan and my mom. They're at the hospital, and they said that Terri has been out of bed, sitting in the chair, for the past 4 hours or so. AND... just a little while ago, a nurse came in and helped her take a short walk. Good news!
Monday, July 12, 2010
Quick note from Dan...
Terri came out of surgery about 3hrs ago. Her doctor said she did very well. We are currently in her room with her, she is uncomfortable but awake with her sense of humor intact! There are no signs that her cancer has spread. She and I and our families thank all of you for your prayers and words of encouragement.
Surgery's done... the Recovery begins NOW
Hi everybody. I'm Terri's sister Rose. I just got word from my niece Rachel that Terri is out of the O.R. and is now in Recovery. The surgeon came out to let the family know that everything went well. The surgery took about 3 1/2 hours. Even though Terri, Dan, Rachel, and my mom had been at the hospital since 10am, they didn't take her back to Pre-Op til almost noon.
She'll likely be in Recovery for a couple of hours then they'll move her to a patient room. Until she's able to post herself (probably in a couple of days), I'll try to keep you updated on how she's doing. If you post comments here, she may see them in a day or two :)
She'll likely be in Recovery for a couple of hours then they'll move her to a patient room. Until she's able to post herself (probably in a couple of days), I'll try to keep you updated on how she's doing. If you post comments here, she may see them in a day or two :)
Sunday, July 11, 2010
Okay, Okay, I'll Be Doing Some Writing
I just can't seem to find the words to express how wonderful my friends are, but if I could I would be typing them on my new iPad right now!!!!!!!!! What an unexpected and extravagant gift. Thanks and love to Mike, Al, Landow, Lewie, Becky, Brian, John John, Bobby, Stacy, Ryan, John, Kenna, Farren, Kevin, Jen-nay, KAK, Ani, Shane and Bill ... but mostly Shane! Haha. Sorry if I forgot anyone. You all know who you are.
Additionally I would like to thank everyone who has sent me emails, messages, and/or comments here. Your offers of assistance are invaluable and likely to be called in at some point; your positive thoughts, healing vibes, prayers and other appeals to deity are not only appreciated but received, absorbed and sent right back out into the world to do more good for other people. Keep it coming. I have a enormous sense of gratitude unparalleled by anything I've experienced ever before.
It's 3:40pm and I'm sitting here waiting for the apprehension and nervousness to attack. I am hoping it will creep up slowly, allowing me time to acknowledge it, battle it briefly and send it away. But I fear it will hit like lightning, a sudden and forceful onslaught of fear, confusion and helplessness. Once after scheduling calls with my surgery time and again when I'm lying on a gurney and a swarm of people start to poke and prod me.
Preparation is all I have left to do. I need to pack a bag to take care of all the physical things I'll need. Then I'll have a nice relaxing soak in the tub to do well by my mental state. I'm going to look at this like a mini-vacation. An extremely physically uncomfortable vacation, but a break from the everyday, nonetheless.
Additionally I would like to thank everyone who has sent me emails, messages, and/or comments here. Your offers of assistance are invaluable and likely to be called in at some point; your positive thoughts, healing vibes, prayers and other appeals to deity are not only appreciated but received, absorbed and sent right back out into the world to do more good for other people. Keep it coming. I have a enormous sense of gratitude unparalleled by anything I've experienced ever before.
It's 3:40pm and I'm sitting here waiting for the apprehension and nervousness to attack. I am hoping it will creep up slowly, allowing me time to acknowledge it, battle it briefly and send it away. But I fear it will hit like lightning, a sudden and forceful onslaught of fear, confusion and helplessness. Once after scheduling calls with my surgery time and again when I'm lying on a gurney and a swarm of people start to poke and prod me.
Preparation is all I have left to do. I need to pack a bag to take care of all the physical things I'll need. Then I'll have a nice relaxing soak in the tub to do well by my mental state. I'm going to look at this like a mini-vacation. An extremely physically uncomfortable vacation, but a break from the everyday, nonetheless.
Saturday, July 10, 2010
Just One Last Taste . . .
I should have started this weeks ago, but it only came to mind just the other day. Most foods and beverages that one particularly enjoys will be off limits to me for many months, if not a full year or more. So I decided I need to be very purposefully enjoying my last chance of many savorings; so that there's nothing I will miss in the next few months.
I started Wednesday when out to lunch at Garces Trading Company. I wanted to take take photos of the meal, but felt very awkward about it. I don't know why, I have friends who do it all the time. It seemed distruptive or rude. But in retrospect I should have just subtly positioned my phone above the dishes and snapped away.
One side of the menu had various cheeses listed on the left and on the right was a selection of "charcuterie" which I figured basically means "cured meat." I had no idea what to do and Mom suggested we ask our server for recommendations.
"He doesn't know anything." I replied.
"You don't think?"
"Of course not," I assured. "They're trained to say the words right and then just bullshit about the dish with an air of confidence so as to make the diner trust in what they say."
"Do you really think so?"
"I KNOW so, mom."
Now, don't get me wrong; maybe our server was truly knowledgeable about fromage and queso and charcuterie. But in my experience it's not so much the possession of actual food and beverage knowledge that gets servers through their shift, but the successful portrayance of an illusion of said knowledge. Now this post is sounding all too much like it belongs on that other Blog I used to write. So I'll try to keep this brief.
We started with a very thinly-sliced French sausage and a French semi-soft cheese both of whose names elude me at this time. Come to think of it, they eluded me when I ordered them and probably butchered the pronunciations. They were served on rectangles of slate, at which I remarked to my mother, "Wow, these must be a pain in the ass to clean." A sentiment she felt complelled to echo to our server. Mom had the Vichyssoise and I had The "Italian" Sandwich, which is described as breasola, hot coppa, melted taleggio, arugula and lemon confit. Translated, that means gooey cheese and cured meat on a delicious piece of bread with some greens and a tasty sauce.
I emailed the four members of my family who have had this surgery before me and asked for their "last-minute" advice on what to do/eat, these last few days. The general consensus is "anything and everything." Because tomorrow I will be laying pretty low and fasting even more than is medically required, I figure today is it. Luckily for me, my nephew is having his graduation party tonight (10 years of architecture school! WTG Eric! Drexel Class of 2010!). This is a nephew who, before choosing to study architecture, was seriously considering becoming a chef. So the kid has great tastes. Come to think of it, the party already started. So I need to finish this up. I may or may not add to this as this night goes on, if I can figure out how to post from my phone.
In the mean-time, here a few things of which I've had the sense to get some in the past two days:
And a few more:
Fresh picked wild raspberries:
SAAAASAGE wit onions n peppers. Yup thatsa Philly thing:
Breakfast!
Smores!
I started Wednesday when out to lunch at Garces Trading Company. I wanted to take take photos of the meal, but felt very awkward about it. I don't know why, I have friends who do it all the time. It seemed distruptive or rude. But in retrospect I should have just subtly positioned my phone above the dishes and snapped away.
One side of the menu had various cheeses listed on the left and on the right was a selection of "charcuterie" which I figured basically means "cured meat." I had no idea what to do and Mom suggested we ask our server for recommendations.
"He doesn't know anything." I replied.
"You don't think?"
"Of course not," I assured. "They're trained to say the words right and then just bullshit about the dish with an air of confidence so as to make the diner trust in what they say."
"Do you really think so?"
"I KNOW so, mom."
Now, don't get me wrong; maybe our server was truly knowledgeable about fromage and queso and charcuterie. But in my experience it's not so much the possession of actual food and beverage knowledge that gets servers through their shift, but the successful portrayance of an illusion of said knowledge. Now this post is sounding all too much like it belongs on that other Blog I used to write. So I'll try to keep this brief.
We started with a very thinly-sliced French sausage and a French semi-soft cheese both of whose names elude me at this time. Come to think of it, they eluded me when I ordered them and probably butchered the pronunciations. They were served on rectangles of slate, at which I remarked to my mother, "Wow, these must be a pain in the ass to clean." A sentiment she felt complelled to echo to our server. Mom had the Vichyssoise and I had The "Italian" Sandwich, which is described as breasola, hot coppa, melted taleggio, arugula and lemon confit. Translated, that means gooey cheese and cured meat on a delicious piece of bread with some greens and a tasty sauce.
I emailed the four members of my family who have had this surgery before me and asked for their "last-minute" advice on what to do/eat, these last few days. The general consensus is "anything and everything." Because tomorrow I will be laying pretty low and fasting even more than is medically required, I figure today is it. Luckily for me, my nephew is having his graduation party tonight (10 years of architecture school! WTG Eric! Drexel Class of 2010!). This is a nephew who, before choosing to study architecture, was seriously considering becoming a chef. So the kid has great tastes. Come to think of it, the party already started. So I need to finish this up. I may or may not add to this as this night goes on, if I can figure out how to post from my phone.
In the mean-time, here a few things of which I've had the sense to get some in the past two days:
And a few more:
Fresh picked wild raspberries:
SAAAASAGE wit onions n peppers. Yup thatsa Philly thing:
Breakfast!
Smores!
Wednesday, July 7, 2010
Down with Wednesdays
You know there's something about Wednesdays lately that flat-out stink. Mostly the weather is crap but they just seem to have been pretty awful for the past few months. Years even. In general, Mondays have been the day that gets people down. Not me. Mondays are fine, almost great. But Wednesdays . . . I'd rather stay up all night on Tuesday and then go to bed just as day is breaking, sleeping all day and night into Thursday morning.
Naturally, today was no exception. A steady stream of minor setbacks, annoying hurdles and seemingly insurmountable obstacles were thrust onto my path at several points throughout the day. I know all about the "Don't Sweat the Small Stuff" philosophy as it is one I try to live by. But sometimes, several little things = one or more big things when they all happen within, say, ten minutes.
I had my pre-admission testing for surgery today. That in itself, was fine. I didn't experience egregious waiting times or have any wrenches thrown into the works. The plebotomist had a hard time tapping a vein to draw blood but that's to be expected; it happens all the time. And there was the following exchange with the nurse who was making sure I was physically capable of undergoing surgery and filling in all the holes in what will be my chart:
"Wait, you said you're not taking any medication. What about Omeprazole? Aren't you taking Prilosec or something for your GERD?"
"I don't have GERD."
"Yes you do."
"No I don't."
Pause.
"The pathology report says there was signs of mild to moderate blah-blah-blah. That's GERD. And you should be taking Omeprazole."
"Well I'm not. I was supposed to take it for two weeks following the endoscopy."
*whipped out my copy of the discharge instructions after endoscopy*
"See?"
*pointed to Recommendations: Omeprazole twice daily for 2 weeks*
"I didn't even take it the whole two weeks."
Pause
"Well okay, but it says you have GERD."
"Lemme ask you something. Does the path report say the mild to moderate blah-blah-blah is in the esophagus or the stomach?"
"Oh no, just the stomach. The esophagus was fine."
"And I'm having my stomach removed. So the GERD will go with it, right?"
"Yes."
"Then, ok, you can let it say I have GERD."
Of the major problems I had to deal with, the first one happened at about 8:45am. That was when I was going to put gas in my car and realized that my Unemployment Compensation that I had beenexpecting absolutely counting on had not been credited to my account. Then later in the day, after I was almost back to my mom's to drop her off, I realized I forgot to buy these special cloths that I need to prep my skin the night before surgery. I went to a nearby hospital to see if they had them and they didn't. A few phone calls to specialty pharmacies was to no avail. So it looks like sometime in the next three days I get to drive all the way back to Philly, burn ten bucks in gas and another ten bucks to park the car, all for a five dollar packet of Chlorhexidine Gluconate cloths. (Unless my niece can score some for me: hint hint Megz).
In between the BS, there were some very high points. The afore-mentioned easy Pre-Admission testing being one. Mom took me to lunch too at a cute little eatery with lots of cheese and cured meat. Very reasonably priced for the quality and totally casual, as we weren't dressed well enough, imo, for 10 Arts or Union Trust, which were my first two choices.
Later, the kids wanted me to play Capture the Flag and I was like,yeah right, are you crazy? It's still 100 degrees outside and it's nine o'clock, I had an awful day, the last thing I want to do is run around getting bit by mosquitoes can't you just let me wallow in my misery? Sure, what are the boundaries. When the game was over I jumped in the pool. It was like 10:30 and the kids thought that was pretty cool so they joined me. Good fun!
So it's important to always end the day on a positive note, right? No matter how awful a day it was. Even on Wednesdays.
Naturally, today was no exception. A steady stream of minor setbacks, annoying hurdles and seemingly insurmountable obstacles were thrust onto my path at several points throughout the day. I know all about the "Don't Sweat the Small Stuff" philosophy as it is one I try to live by. But sometimes, several little things = one or more big things when they all happen within, say, ten minutes.
I had my pre-admission testing for surgery today. That in itself, was fine. I didn't experience egregious waiting times or have any wrenches thrown into the works. The plebotomist had a hard time tapping a vein to draw blood but that's to be expected; it happens all the time. And there was the following exchange with the nurse who was making sure I was physically capable of undergoing surgery and filling in all the holes in what will be my chart:
"Wait, you said you're not taking any medication. What about Omeprazole? Aren't you taking Prilosec or something for your GERD?"
"I don't have GERD."
"Yes you do."
"No I don't."
Pause.
"The pathology report says there was signs of mild to moderate blah-blah-blah. That's GERD. And you should be taking Omeprazole."
"Well I'm not. I was supposed to take it for two weeks following the endoscopy."
*whipped out my copy of the discharge instructions after endoscopy*
"See?"
*pointed to Recommendations: Omeprazole twice daily for 2 weeks*
"I didn't even take it the whole two weeks."
Pause
"Well okay, but it says you have GERD."
"Lemme ask you something. Does the path report say the mild to moderate blah-blah-blah is in the esophagus or the stomach?"
"Oh no, just the stomach. The esophagus was fine."
"And I'm having my stomach removed. So the GERD will go with it, right?"
"Yes."
"Then, ok, you can let it say I have GERD."
Of the major problems I had to deal with, the first one happened at about 8:45am. That was when I was going to put gas in my car and realized that my Unemployment Compensation that I had been
In between the BS, there were some very high points. The afore-mentioned easy Pre-Admission testing being one. Mom took me to lunch too at a cute little eatery with lots of cheese and cured meat. Very reasonably priced for the quality and totally casual, as we weren't dressed well enough, imo, for 10 Arts or Union Trust, which were my first two choices.
Later, the kids wanted me to play Capture the Flag and I was like,
So it's important to always end the day on a positive note, right? No matter how awful a day it was. Even on Wednesdays.
Monday, July 5, 2010
"Sabbatical From Work"
The title is in quotes because in a certain way, I have been on sabbatical from work since I quit my job at a publishing company back in '95. Many would argue that working in the service industry is as "real" of an occupation as could be imagined and for the most part I would argue that too. Except for the fact that I've been able to eschew such real world responsibilities as retirement planning, long-term disability insurance and having to go to bed before 3am. Much to my detriment, I might add, but that's another story.
In any case, many have been wondering what in fact I have been doing for employment for the past four months. The short answer is, not much. I've been working part-time (2.25 days per week) as a bartender at a local Golf Club. It certainly is work in an economical sense; being that my labor = a value at which I should be compensated = I can go buy some food and stuff from time to time. Believe it or not, I rather miss the frenzied calls for fifteen Car Bombs that I've railed against so often in the past. These Country Club folk can come across as so proper and well-mannered! But, it's not a challege to be paralled with, say, other things I am facing in my life at this time.
Yet in a very short period of time I've grown quite fond of both my fellow employees, and all their idiosynchrasies; and also the members, and all of their idiosynchrasies. For instance, I finally learned just today that one particular member, when he asks for "vodka" means "Grey Goose" ALWAYS and another who always wants his drinks in a pint glass or "go" cup and wants nothing whatsoever to do with the glass that at this club is used for a highball. This is great knowledge to have; should I actually need it in the future. But today was my last shift at the Golf Club. Though none other than my immediate manager knew it. It's kind of the way this thing worked out. I didn't think my departure required much fanfare, as I was still the new kid. And there was none of the typical "last day" activities surrounding it (cake, Jaeger Bombs, etc.). It was a quiet bow out to a short chapter of my life that one day might be reopened.
I have to admit that the chef unknowingly made a delicious departing meal this evening. He asked if I liked fresh tuna. I abstained from asking him that if by the word, fresh, he meant it was swimming in the Atlantic just yesterday afternoon, because I've grown accustomed to my husband's deep sea fishing excursions in the past and ...
well it was delectable in any case, accompanied by some whipped/mashed red skinned potatoes and grilled zucchini that had been plucked from its vine just this afternoon. There may or may not have been a secret scrumptious dessert later. I'll never tell.
Now it's finally time for me to start concentrating on the severity and depth of my surgery, what with the final day of work obligation behind me, coupled with the previous week of "nesting" activity. I have been cleaning the house like a mother hen, preparing my abode for the new arrival. That being, the new and improved, cancer-free me, I guess.
In the past few days I've decided that 40 is a very good middle point in life. Not that 80 is the end mind you, but I decided that everything I've lived up until this point is simply the FIRST half of my life. I've made some rotten choices and some excellent ones. But it was all just prelude to the NEXT chapter of my life; which will kick the shit out of the previous one.
Cheers!
In any case, many have been wondering what in fact I have been doing for employment for the past four months. The short answer is, not much. I've been working part-time (2.25 days per week) as a bartender at a local Golf Club. It certainly is work in an economical sense; being that my labor = a value at which I should be compensated = I can go buy some food and stuff from time to time. Believe it or not, I rather miss the frenzied calls for fifteen Car Bombs that I've railed against so often in the past. These Country Club folk can come across as so proper and well-mannered! But, it's not a challege to be paralled with, say, other things I am facing in my life at this time.
Yet in a very short period of time I've grown quite fond of both my fellow employees, and all their idiosynchrasies; and also the members, and all of their idiosynchrasies. For instance, I finally learned just today that one particular member, when he asks for "vodka" means "Grey Goose" ALWAYS and another who always wants his drinks in a pint glass or "go" cup and wants nothing whatsoever to do with the glass that at this club is used for a highball. This is great knowledge to have; should I actually need it in the future. But today was my last shift at the Golf Club. Though none other than my immediate manager knew it. It's kind of the way this thing worked out. I didn't think my departure required much fanfare, as I was still the new kid. And there was none of the typical "last day" activities surrounding it (cake, Jaeger Bombs, etc.). It was a quiet bow out to a short chapter of my life that one day might be reopened.
I have to admit that the chef unknowingly made a delicious departing meal this evening. He asked if I liked fresh tuna. I abstained from asking him that if by the word, fresh, he meant it was swimming in the Atlantic just yesterday afternoon, because I've grown accustomed to my husband's deep sea fishing excursions in the past and ...
well it was delectable in any case, accompanied by some whipped/mashed red skinned potatoes and grilled zucchini that had been plucked from its vine just this afternoon. There may or may not have been a secret scrumptious dessert later. I'll never tell.
Now it's finally time for me to start concentrating on the severity and depth of my surgery, what with the final day of work obligation behind me, coupled with the previous week of "nesting" activity. I have been cleaning the house like a mother hen, preparing my abode for the new arrival. That being, the new and improved, cancer-free me, I guess.
In the past few days I've decided that 40 is a very good middle point in life. Not that 80 is the end mind you, but I decided that everything I've lived up until this point is simply the FIRST half of my life. I've made some rotten choices and some excellent ones. But it was all just prelude to the NEXT chapter of my life; which will kick the shit out of the previous one.
Cheers!
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