I have been home from the hospital for a week now and am starting to get the hang of this new PEG tube. I am finally figuring out how to drain my stomach contents easily and am able to avoid vomiting most of the time.
I believe I am now fully obstructed. I occasionally have a small amount of juice, soda, or other drink (think 4oz or less) and that small amount of drink has been making a return trip back out the PEG tube rather than trying to process through my digestive tract. I am able to consume small ice chips throughout the day so this occupies my mouth and stomach to a limited extent.
I don't know exactly how many calories I am getting in TPN right now (will check next time I speak with the nutritionist) but think it is somewhere in the area of 2000 calories. I then get an additional one liter of saline fluid infused to prevent the dehydration that sent me to the hospital before. I am retaining fluid now so we may need to adjust the amount of additional saline that I get but at least I am not getting dehydrated.
Dr. Boudreaux wants to see my numbers improve and they are indeed. I have looked at all the liver numbers and they are on a very constant track back to 'normal' for me. My kidney numbers have also returned to my baseline values. This is good news because there always was the worry that a significant amount of real damage had occurred a couple of weeks ago but that seems to be in the past now.
The other thing Dr. Boudreaux wants before surgery is "He needs to be able to walk around, up the whole day." I can certainly walk around, not far and not a lot but I can walk around. As to up all day, I normally take a nap every day and I don't know if this will be a strike against me or not.
Food smells so good. I am almost to the point where I dread mealtime because I know that my nose is going to be picking up all these wonderful scents and will have no chance to satisfy them. I know that eating anything now will not happen until I have surgery unless I am willing to just vomit up the food I eat later and that is not fun.
It isn't limited to food that smells good either. I have been craving clementines and the burst of juice when you bite into a wedge of fruit. The usual other suspects are there as well. I have been thinking of tacos and chips with salsa. I have been craving that feeling of refreshment when you drink half a can of soda or other liquid after working hard in the heat and how it just pulses through your body.
I want sausage and bacon with either french toast or pancakes (blueberry?) along with lots of butter and real maple syrup. Spaghetti and lasagna (the good stuff my wife makes) along with garlic bread with real butter sounds fantastic. I want a Chipotle fajita burrito with chicken, chili-corn salsa, pico de gallo and sour cream with a large root beer to drink.
There are some sweets as well. Creme brulee always tastes so good and Stephanie and I would occasionally stop by the Bone Fish Grill just to have one for desert with some fresh berries on top. Speaking of fresh berries, just picked strawberries, bursting with flavor, chopped over some ice cream or just on their own. Summer grapes and watermelon sound wonderful and I am looking forward to fruit salads with lots of fresh fruits. Of course, donuts are on the list with a French Crueler or a Boston Cream from Duncan Donuts making the list.
When do I get to eat again? I don't know. We are supposed to touch base with Dr. Boudreaux around April 1st and update him on status so maybe we will get some plans at that point. I just fear this getting pushed off further and further, having to live like this longer and longer. My daughter, River, graduates this year and I fear missing her graduation in mid May along with her and my youngest son's birthdays in mid April. I want the surgery but I don't want to miss out and, obviously, I don't want to die either.
Saturday, March 26, 2016
Saturday, March 19, 2016
Look ma! New tubes!
I haven't written since before I entered the hospital and that is because I have been fairly down physically and emotionally. Upon entering the hospital last Tuesday the 8th, a number of things have happened and I think Stephanie has kept most of you up to date but here is my take on the last 10 days.
On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected. They started me on IV fluids and that helped my overall situation considerably. Then, we me Dr. Doom. AKA Dr. Murphy, the on-call oncologist. He came in and gave one of the most dire evaluations I have ever gotten. He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go. He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.
Well, Surprise! Not dead yet. This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations. We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).
Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me. We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.
With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool. Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube. Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.
The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure. After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach. It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.
What we have done is now buy some time. I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy. Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.
What will this next surgery buy me? I am hoping for a few years. If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game. I don't hope for 20 years or even for 10. Another three or four would be awesome and I will treasure every moment.
I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next. I will treasure every bite of food and every drink I take. I will enjoy the tickling that carbonated drinks give the back of your throat. I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.
Of course, this assumes that we make it through the next few weeks and the surgery that follows. It is not going to be easy nor is it going to involve easy choices but I need to live. I want to live. I want to see and do all that I can with the time I have remaining. Please keep my family in your thoughts over the next period of time and I will try post more frequently.
On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected. They started me on IV fluids and that helped my overall situation considerably. Then, we me Dr. Doom. AKA Dr. Murphy, the on-call oncologist. He came in and gave one of the most dire evaluations I have ever gotten. He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go. He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.
Well, Surprise! Not dead yet. This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations. We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).
Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me. We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.
With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool. Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube. Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.
The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure. After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach. It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.
What we have done is now buy some time. I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy. Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.
What will this next surgery buy me? I am hoping for a few years. If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game. I don't hope for 20 years or even for 10. Another three or four would be awesome and I will treasure every moment.
I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next. I will treasure every bite of food and every drink I take. I will enjoy the tickling that carbonated drinks give the back of your throat. I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.
Of course, this assumes that we make it through the next few weeks and the surgery that follows. It is not going to be easy nor is it going to involve easy choices but I need to live. I want to live. I want to see and do all that I can with the time I have remaining. Please keep my family in your thoughts over the next period of time and I will try post more frequently.
Monday, March 7, 2016
Back to the Hospital
My bowel obstruction just won't release and I am quickly going downhill. The Afinitor is driving my kidneys into failure so I have stopped taking it. The TPN was driving my liver into failure so we had to remove lipids from the TPN, greatly reducing the caloric content. Furthermore, I am unable to keep anything down other than sips of water and ice chips.
My weight has plummeted. This morning, the scale gave me the scary number of 133.2 pounds which is my absolute lowest ever by far. Some of that is probably dehydration but there is some truth to that number and that is incredibly scary. I am 6' 3" tall and 133 pounds is the kind of weight you would expect from an unhealthy runway model or a victim of anorexia/bulimia.
So, we have three different critical issues right now and enough is enough. I am trying to wrap up things around the house today and will be going to the hospital tomorrow to see if I can get stabilized in some fashion. At the same time, I have a message into my doctors in NOLA to see if they have suggestions as well because it is becoming urgent.
We were hoping to get my strength back over the next few months prior to having a major abdominal surgery but I don't think we will get that chance. I think we need a surgery fairly soon and my being weak is going to be just another risk factor that we will need to consider. Right now, I don't see any way to get more calories.
TPN can't go too high with just dextrose and amino acids as that will cause problems with the pancreas and type 2 diabetes. I can't swallow anything so there is no way to get calories orally. I am starting to experience some pretty severe abdominal cramps from the obstruction and then I also had the joy of fecal vomiting last night (experienced once before in a previous bowel obstruction).
I am quite miserable right now and we need to find a way out of this. I dread surgery and the recovery that is likely to be long and difficult. I fear getting stuck in New Orleans for several weeks before and after surgery. I worry about my wife and her new job, needing to take time off to take care of me while I am in and post surgery in NOLA.
On top of all of that, we have my daughter graduating from high school and I would love to be back home and at least partially recovered by her graduation in mid May. We have club soccer starting up for Forrest and are down a driver with Riley in College. We look at the enormity of everything coming up and it is scary.
Many people have offered help and we may need to rely on them heavily over the next period of time. One other thing (and this is Really a whine), we had a ski-in ski-out condo at Crested Butte and I saw it as my once chance to go skiing, even just a few easy green runs, this season. Obviously, that is out now too.
Bit of a downer and rambling post here and I apologize for that but that is a reflection of the situation that Stephanie, my family, and I are in at this point in time.
Wednesday, February 10, 2016
Back to work part time
On Friday, 2/6, I went in to work to get my laptop fixed and had intended on staying just long enough to get it taken care of and then I was going to be out of there. When I got to work, my badge was disabled so it was back out to pass and ID to get that resolved and then through the portals at Schriever. Of course, I got to the room I work at and, again, my badge didn't work so back up to the badge office to get my access restored and I was finally at my desk.
On the 45 minute drive in, I thought I would just go ahead and start back to work half time because I can sit at a desk and be productive at work as easily as I can sit on the couch and watch TV. I got to my desk and was able to contribute immediately on several items and that solidified my decision. I got my laptop working and finished out my first half day at work.
This week has gone well so far but it is really quite stunning to me to see how much a simple 4 hour day takes out of me. I come home and take a 1-2hr nap when possible but have had appointments almost every day this week after work so that has bitten into my nap time. I also have an Octroscan scheduled for next week but was giving a small amount of tasking I can do from home and will capitalize on that opportunity as well as use some holiday hours.
It is incredibly rewarding to be back at work. I am good at what I do and it feels wonderful to be able to use my talents once again. I know that every day is not going to be rewarding and many are going to be drudgery but the once or twice a day where I can really help others and advance our project are soothing to my soul.
I am still not eating well. I get my 2300 calories per day from TPN and then try to supplement that with another 500+ calories of a full liquid diet. This usually amounts to something like orange juice for breakfast, ensure and a soda for lunch, and tomato soup and sweet tea for dinner. This menu gives me about 650+ calories or so which is a good additional boost. I still crave real food and every once in a while splurge with solids but I pay a price for it with an obstruction generally following that meal. It works its way through eventually but it just takes a while. I do have to say the buffalo wings on Sunday were very good!
I start the extra Lanrenotide tomorrow but still don't have the Afinitor scheduled yet. I don't know how long it will take for the insurance company to approve but hope it won't be too long. My local oncologist is a bit more concerned about side affects than Dr. Boudreaux but my TPN includes weekly monitoring of my metabolic system so we can keep a good eye on my kidneys and other functions.
I know I will have to return to full time disability for periods in the future such as the procedures in NOLA and a hoped for laparotomy sometime this summer but this is good for now. I will enjoy my time in the real world and look forward to the point at which I can return to work full time and, perhaps, actually get to ski next year or play hockey again.
On the 45 minute drive in, I thought I would just go ahead and start back to work half time because I can sit at a desk and be productive at work as easily as I can sit on the couch and watch TV. I got to my desk and was able to contribute immediately on several items and that solidified my decision. I got my laptop working and finished out my first half day at work.
This week has gone well so far but it is really quite stunning to me to see how much a simple 4 hour day takes out of me. I come home and take a 1-2hr nap when possible but have had appointments almost every day this week after work so that has bitten into my nap time. I also have an Octroscan scheduled for next week but was giving a small amount of tasking I can do from home and will capitalize on that opportunity as well as use some holiday hours.
It is incredibly rewarding to be back at work. I am good at what I do and it feels wonderful to be able to use my talents once again. I know that every day is not going to be rewarding and many are going to be drudgery but the once or twice a day where I can really help others and advance our project are soothing to my soul.
I am still not eating well. I get my 2300 calories per day from TPN and then try to supplement that with another 500+ calories of a full liquid diet. This usually amounts to something like orange juice for breakfast, ensure and a soda for lunch, and tomato soup and sweet tea for dinner. This menu gives me about 650+ calories or so which is a good additional boost. I still crave real food and every once in a while splurge with solids but I pay a price for it with an obstruction generally following that meal. It works its way through eventually but it just takes a while. I do have to say the buffalo wings on Sunday were very good!
I start the extra Lanrenotide tomorrow but still don't have the Afinitor scheduled yet. I don't know how long it will take for the insurance company to approve but hope it won't be too long. My local oncologist is a bit more concerned about side affects than Dr. Boudreaux but my TPN includes weekly monitoring of my metabolic system so we can keep a good eye on my kidneys and other functions.
I know I will have to return to full time disability for periods in the future such as the procedures in NOLA and a hoped for laparotomy sometime this summer but this is good for now. I will enjoy my time in the real world and look forward to the point at which I can return to work full time and, perhaps, actually get to ski next year or play hockey again.
Wednesday, February 3, 2016
Time for a plan stan
It has been forever since I have posted but things have been kinda bland for a while. My digestive tract continues to be tentative with alternating weeks/days of obstruction and semi-normal behavior. We have increased the calorie count on the TPN to just under 2300 calories per day and I am hoping that this is able to reverse some of my weight loss.
I currently am at about 144 pounds and have struggled with fluid retention. The TPN is 1.5 liters of fluid per day and at times my fluids get a bit out of whack and it takes a couple of days/weeks of additional diuretics to bring it back in line. As of the start of this week, I no longer have swollen ankles or feet so the 144 pounds seems to be a valid weight at this point.
Now, on to the plan. We met with with Dr. Boudreaux in New Orleans this past Tuesday and when we had to remind him of our last surgical visit with him, thought this was going to be a wasted trip. He then excused himself to talk to some other doctors and then came back with a big plan. There are portions of the plan that are certain and some that are uncertain at this point so I will deal with them separately.
For certain, we will be doubling my injections of Lanrenotide. This is the relatively painful shot I used to get every four weeks in the glutes and we will now be doing it every two weeks. We will also be starting a new chemo drug called Afinitor. A recent study showed that the use of Afinitor was able to give significant progression free response in mid gut carcinoids and we are hoping I am one of those to respond. It also has the effect of softening scar tissue which is a large reason for the problems I have digesting food.
We will run these for 3 months and then re-evaluate tumor markers to see if we have reduced tumor burden and improved the overall situation. This is the known portion of our new plan.
The unknown portion involves two separate procedures. First, another doctor at the NOLA clinic believes he can place the nano-knife probes to get the tumors near the rectum. He is more talented in this area than Dr. Boudreaux so it is something we will try. We also may get it done up in Denver if Dr. Eric Liu (another carcinoid specialist) knows of a nano-knife expert that could reach the tumors.
The second portion is to directly address the tumors in the liver for the first time using Transcatheter Arterial Chemoemobolization (TACE). This is a procedure where a catheter is fed through an artery in my thigh and up to the liver. Chemo drugs are then directly introduced to the tumors with the hope of killing them. The liver is fed by two different blood supplies, the hepatic artery and the hepatic portal vein. The liver tends to get about 75% of its blood supply from the vein and the tumors almost always live on the oxygen rich artery output so targeting tumors and not liver is somewhat straightforward.
It does carry risk for other organs such as the kidney but they will try to protect them as much as possible with other medications. They will also inject dye through the artery and follow it on x-ray to see where it goes. They can then temporarily 'plug' some holes to try and reduce the collateral damage.
Reducing the amount of tumor in my liver is hoped to reduce the amount of carcinoid syndrome I experience and also reduce the likelihood of carcinoid crisis. My understanding is that the hormones that the tumors give off are often filtered out by the liver but when the tumors in the liver get too large, there is no filter to prevent it from reaching the rest of the system which causes my crashes.
If the doctor in Denver can do the nanoknife, we will do that soonest. If not, we will wait and do the tumors near the rectum along with the TACE at the same time in NOLA in about 3 months. Once this is all done, we will hopefully then be in a position where I could tolerate a major surgery which could be done to address the tumors wrapped around the ureters and possibly free up my bowels a bit.
It is hopeful to have a plan. It is good to know what we are going to be doing. It is nice to know there is a hope to get me to the point where I can eat somewhat normally because I love food. It is nice to have a goal that keeps me around for a while longer to enjoy my kids' college, calculus, and athletics.
I currently am at about 144 pounds and have struggled with fluid retention. The TPN is 1.5 liters of fluid per day and at times my fluids get a bit out of whack and it takes a couple of days/weeks of additional diuretics to bring it back in line. As of the start of this week, I no longer have swollen ankles or feet so the 144 pounds seems to be a valid weight at this point.
Now, on to the plan. We met with with Dr. Boudreaux in New Orleans this past Tuesday and when we had to remind him of our last surgical visit with him, thought this was going to be a wasted trip. He then excused himself to talk to some other doctors and then came back with a big plan. There are portions of the plan that are certain and some that are uncertain at this point so I will deal with them separately.
For certain, we will be doubling my injections of Lanrenotide. This is the relatively painful shot I used to get every four weeks in the glutes and we will now be doing it every two weeks. We will also be starting a new chemo drug called Afinitor. A recent study showed that the use of Afinitor was able to give significant progression free response in mid gut carcinoids and we are hoping I am one of those to respond. It also has the effect of softening scar tissue which is a large reason for the problems I have digesting food.
We will run these for 3 months and then re-evaluate tumor markers to see if we have reduced tumor burden and improved the overall situation. This is the known portion of our new plan.
The unknown portion involves two separate procedures. First, another doctor at the NOLA clinic believes he can place the nano-knife probes to get the tumors near the rectum. He is more talented in this area than Dr. Boudreaux so it is something we will try. We also may get it done up in Denver if Dr. Eric Liu (another carcinoid specialist) knows of a nano-knife expert that could reach the tumors.
The second portion is to directly address the tumors in the liver for the first time using Transcatheter Arterial Chemoemobolization (TACE). This is a procedure where a catheter is fed through an artery in my thigh and up to the liver. Chemo drugs are then directly introduced to the tumors with the hope of killing them. The liver is fed by two different blood supplies, the hepatic artery and the hepatic portal vein. The liver tends to get about 75% of its blood supply from the vein and the tumors almost always live on the oxygen rich artery output so targeting tumors and not liver is somewhat straightforward.
It does carry risk for other organs such as the kidney but they will try to protect them as much as possible with other medications. They will also inject dye through the artery and follow it on x-ray to see where it goes. They can then temporarily 'plug' some holes to try and reduce the collateral damage.
Reducing the amount of tumor in my liver is hoped to reduce the amount of carcinoid syndrome I experience and also reduce the likelihood of carcinoid crisis. My understanding is that the hormones that the tumors give off are often filtered out by the liver but when the tumors in the liver get too large, there is no filter to prevent it from reaching the rest of the system which causes my crashes.
If the doctor in Denver can do the nanoknife, we will do that soonest. If not, we will wait and do the tumors near the rectum along with the TACE at the same time in NOLA in about 3 months. Once this is all done, we will hopefully then be in a position where I could tolerate a major surgery which could be done to address the tumors wrapped around the ureters and possibly free up my bowels a bit.
It is hopeful to have a plan. It is good to know what we are going to be doing. It is nice to know there is a hope to get me to the point where I can eat somewhat normally because I love food. It is nice to have a goal that keeps me around for a while longer to enjoy my kids' college, calculus, and athletics.
Monday, December 14, 2015
Christmas joy from friends and coworkers
All afternoon and evening, Stephanie had been frantically working on cleaning the house like she was expecting guests. I knew we were expecting her boss and his wife for dinner next Monday so this seemed a bit premature. Fortunately, the kids were helpful in doing some of vacuuming and cleaning. Stephanie also made cookies and I could not fathom why since her party for work was Wednesday and she is very big on fresh cookies.
The doorbell rang three times tonight. The first time was a delivery from UPS. The second time, Steph grumbled about the UPS guy missing a package. The third time was just after Forrest went out to the mailbox to get today's mail and I assumed he somehow locked himself out. I then heard caroling and thought that it was a nice throwback and enjoyed listening to the song from my couch.
I then heard them coming inside the house and thought that was very odd until they came into the room where I was sitting and I saw familiar faces of my coworkers and friends. Needless to say, I was very stunned. More than a dozen people got together to come to my house, just to sing me some carols and let me know that, although I am not at work, I am not forgotten.
They brought joy to this night and tears to my eyes. I know I am loved but to see this sort of action from coworkers and friends just shook me to my core. They brought along a stack of Christmas cards, signed from many at work who were unable to come and also a gift of a heated blanket so that I don't have to crank the heat up and sweat out everyone else in the room.
How do you repay this sort of kindness? How you do tell people that they have given your soul new life through their gift of time and song? My only possible payment is to make my way through my current struggle and pass on the same kindness to others. I am humbled. For those, reading my blog, who are Christian, this is exactly what Christ meant when he said "For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in".
This Christmas, remember those who are sick. Remember those who are hungry. Remember those who have no place to live. If you truly believe that there is a war on Christmas, the way to fight that war is not to complain about people saying 'Happy Holidays' but it is to remember and take care of those who are not as fortunate as you.
The doorbell rang three times tonight. The first time was a delivery from UPS. The second time, Steph grumbled about the UPS guy missing a package. The third time was just after Forrest went out to the mailbox to get today's mail and I assumed he somehow locked himself out. I then heard caroling and thought that it was a nice throwback and enjoyed listening to the song from my couch.
I then heard them coming inside the house and thought that was very odd until they came into the room where I was sitting and I saw familiar faces of my coworkers and friends. Needless to say, I was very stunned. More than a dozen people got together to come to my house, just to sing me some carols and let me know that, although I am not at work, I am not forgotten.
They brought joy to this night and tears to my eyes. I know I am loved but to see this sort of action from coworkers and friends just shook me to my core. They brought along a stack of Christmas cards, signed from many at work who were unable to come and also a gift of a heated blanket so that I don't have to crank the heat up and sweat out everyone else in the room.
How do you repay this sort of kindness? How you do tell people that they have given your soul new life through their gift of time and song? My only possible payment is to make my way through my current struggle and pass on the same kindness to others. I am humbled. For those, reading my blog, who are Christian, this is exactly what Christ meant when he said "For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in".
This Christmas, remember those who are sick. Remember those who are hungry. Remember those who have no place to live. If you truly believe that there is a war on Christmas, the way to fight that war is not to complain about people saying 'Happy Holidays' but it is to remember and take care of those who are not as fortunate as you.
Back on TPN but I am eating some
On December 7th, I got started on TPN again. This is my third time and I am getting to be an old hand at the routine. I am being infused over a 12hr cycle so the TPN starts in the evening and then finishes just as I get up in the morning which is very nice. It still interferes with sleeping somewhat but not having to carry the bag around all the time is very nice.
I started on 1000 calories per day which is a nice improvement over what I had been taking in. After a couple of days, they then advanced me to 1500 calories/day and that is where I am at now. With 1500 calories/day through TPN, I don't need to consume a huge amount of food to maintain or gain weight now.
As to eating, I am slowly feeling out my boundaries of what I can eat and what I cannot. My near term goal is to do fluids for breakfast and lunch with semi normal food for dinner. My first attempt at this was on Sunday, December 6th.
We had a belated birthday celebration for Stephanie and we got dinner from Five Guys. A hamburger is out of the question for me but they do make a grilled cheese sandwich which should be relatively easy to digest. I lucked out and they grilled my sandwich right where they had recently grilled some onions and that added a very nice hit of flavor to the sandwich. I also got extra cheese which added even more calories and I had a very happy tummy.
Monday night brought more real food and I had Kraft Mac-n-Cheese in the blue box. This meal also went very well and I continued to press forward. Tuesday night brought taco-Tuesday from Del Taco and the three crunchy tacos and a churro was a step too far, causing me to not eat much of anything on Wednesday.
I have found a new taste for tomato soup and there are some very good options out there for me to eat. I do sneak in a couple of club crackers with the soup but I am sure to chew them to a good mash before swallowing. I have lost my taste for cream of mushroom or cream of chicken soup somewhat but it certainly is better than nothing and a few crackers help them out as well.
I have been just having a large glass of orange juice for breakfast, skipping the cream of wheat but may add that in as time goes on as well. I often then supplement all of this with an ensure, jello, pudding, or some ice cream throughout the day. On a good day, I easily exceed 1000 calories of food consumed but bad days are often only a few hundred.
The weight will come and the fatigue will start to go away. Not immediately but I can be patient. I am currently hovering in the upper 130s for weight. According to BMI, I am severely underweight at this point (I would just barely be normal for someone 5' 9"). My current weight goal is to make it to 150 which puts me solidly into the normal weight category with a little bit of margin.
What is the long term plan? I don't know. I should be seeing my surgeon in early January and we can discuss some then. I don't know if I am operable at this point or if surgery could even resolve it. I do know that I need to be stronger before that could even happen either. If I can get to where I am eating one real meal (even a limited meal) a day, that is something I think I could tolerate for quite a while.
I started on 1000 calories per day which is a nice improvement over what I had been taking in. After a couple of days, they then advanced me to 1500 calories/day and that is where I am at now. With 1500 calories/day through TPN, I don't need to consume a huge amount of food to maintain or gain weight now.
As to eating, I am slowly feeling out my boundaries of what I can eat and what I cannot. My near term goal is to do fluids for breakfast and lunch with semi normal food for dinner. My first attempt at this was on Sunday, December 6th.
We had a belated birthday celebration for Stephanie and we got dinner from Five Guys. A hamburger is out of the question for me but they do make a grilled cheese sandwich which should be relatively easy to digest. I lucked out and they grilled my sandwich right where they had recently grilled some onions and that added a very nice hit of flavor to the sandwich. I also got extra cheese which added even more calories and I had a very happy tummy.
Monday night brought more real food and I had Kraft Mac-n-Cheese in the blue box. This meal also went very well and I continued to press forward. Tuesday night brought taco-Tuesday from Del Taco and the three crunchy tacos and a churro was a step too far, causing me to not eat much of anything on Wednesday.
I have found a new taste for tomato soup and there are some very good options out there for me to eat. I do sneak in a couple of club crackers with the soup but I am sure to chew them to a good mash before swallowing. I have lost my taste for cream of mushroom or cream of chicken soup somewhat but it certainly is better than nothing and a few crackers help them out as well.
I have been just having a large glass of orange juice for breakfast, skipping the cream of wheat but may add that in as time goes on as well. I often then supplement all of this with an ensure, jello, pudding, or some ice cream throughout the day. On a good day, I easily exceed 1000 calories of food consumed but bad days are often only a few hundred.
The weight will come and the fatigue will start to go away. Not immediately but I can be patient. I am currently hovering in the upper 130s for weight. According to BMI, I am severely underweight at this point (I would just barely be normal for someone 5' 9"). My current weight goal is to make it to 150 which puts me solidly into the normal weight category with a little bit of margin.
What is the long term plan? I don't know. I should be seeing my surgeon in early January and we can discuss some then. I don't know if I am operable at this point or if surgery could even resolve it. I do know that I need to be stronger before that could even happen either. If I can get to where I am eating one real meal (even a limited meal) a day, that is something I think I could tolerate for quite a while.
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