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.
Monday, December 14, 2015
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.
Wednesday, December 2, 2015
Home but not out of the woods
I entered the hospital on Friday 11/27 and was on a clear liquid diet until Sunday evening, the 29th. I then did a full liquid diet for three meals without any issues and transitioned to an unrestricted diet on Monday evening. I continued the unrestricted diet through Tuesday without issues and was released Tuesday afternoon.
Unfortunately, things have not continued to be issue free. Tuesday evening dinner made my stomach hurt some and made me concerned that things were not OK. Wednesday lunch caused some very significant stomach cramps and the gurgling in my stomach returned that usually accompanies a bowel obstruction.
I am not out of the woods. I have an appointment with my oncologist tomorrow and will be asking to get back on TPN so that I can get some consistent nutrition back into my body. My body is weak and I can feel it hovering on the edge of a cliff. I am almost always cold and walking up and down the stairs is something I have to really convince myself to do. Once on TPN, I will be going back to a liquid diet with the occasional regular food as I tolerate it. I don't know if this situation can be resolved with surgery or some other intervention but that is the plan for now.
I feel like I am finally hitting the endgame. As most of you know, I have been at this for fourteen years but I have never had a year like this one. I have not been 100% since February and have not even been 50% for much of that period. I always feel exhausted and am always looking forward to the next time I can take a nap or go to sleep for the night.
I fear that I will not return to 100% at any point in the future and would be excited just to be at 50% at this point. I have given up on playing hockey again and fear that skiing is not going to be an option as well. Returning to work is yet another step that I don't know if or when it will occur.
Sorry to be such a downer here but I have always pledged to be honest with everyone as to where I am and how I feel. I am down physically and emotionally but hope to make improvements beyond where I am currently. I know I won't get back to 100% of where I was but hope to improve from where I am now.
Sunday, November 29, 2015
Back in the hospital again
Three hospitalizations in a month sets quite the record for me. Early the week of Thanksgiving week, I started having issues with what appeared to be an obstruction. I then went without eating from Tuesday afternoon through Thursday morning in an attempt to relieve the obstruction. I ate Thanksgiving dinner with the family and got to enjoy one of the best turkey's I have ever eaten (excellent job Steph!) but food did not stay down and the obstruction was a given.
On Friday, we finally decided to go to the hospital and had no idea of the shooting in town and got a bit caught up in the hospital insanity that resulted from that event. We finally got through the ER with a CT scan that showed anasarca in my abdomen. The doctor felt that this probably was causing problems with blood flow and digestion in the intestines and we got moved into a hospital room late Friday night.
Since then, I have been sitting in a hospital room here in Colorado Springs, 'enjoying' a clear liquid diet, dreaming of some of that thanksgiving dinner I did eat. We don't know much about what the future holds at this point. The hospital doctors are hesitant to suggest anything and my doctors have limited availability because of the holiday weekend.
Clear liquids have done well today (I did vomit yesterday) and the cramping seems to have passed completely. Passages appear to be opening so I hope to progress my diet soon but don't know when that may or may not occur. The lack of seeing doctors has been frustrating but I know doctors are people too and need to spend time with their families as well.
This means that a return to work is obviously delayed as does any other return to anything appearing to be normal. Fortunately, I am in Colorado Springs, close to friends and family and can see all of them easily. It also makes things much easier on Stephanie and the kids.
I will update as I get more information but, for now, the hospital is where I will remain for the near future.
On Friday, we finally decided to go to the hospital and had no idea of the shooting in town and got a bit caught up in the hospital insanity that resulted from that event. We finally got through the ER with a CT scan that showed anasarca in my abdomen. The doctor felt that this probably was causing problems with blood flow and digestion in the intestines and we got moved into a hospital room late Friday night.
Since then, I have been sitting in a hospital room here in Colorado Springs, 'enjoying' a clear liquid diet, dreaming of some of that thanksgiving dinner I did eat. We don't know much about what the future holds at this point. The hospital doctors are hesitant to suggest anything and my doctors have limited availability because of the holiday weekend.
Clear liquids have done well today (I did vomit yesterday) and the cramping seems to have passed completely. Passages appear to be opening so I hope to progress my diet soon but don't know when that may or may not occur. The lack of seeing doctors has been frustrating but I know doctors are people too and need to spend time with their families as well.
This means that a return to work is obviously delayed as does any other return to anything appearing to be normal. Fortunately, I am in Colorado Springs, close to friends and family and can see all of them easily. It also makes things much easier on Stephanie and the kids.
I will update as I get more information but, for now, the hospital is where I will remain for the near future.
Wednesday, November 18, 2015
Back home again and I am not fine.
Home from New Orleans and I am not doing so well. I weigh in at about 190 pounds right now and that is about 45 pounds of fluid buildup from all the IVs that were running in me last week. The procedures were supposed to be easy with my returning to work right after return but the days in the ICU have made that impossible.
I feel as if I am right back where I was in June after that marathon surgery. My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding. I am not fine and I feel like the mountains just keep growing in front of me. Stephanie saw someone else's blog post and it fits the way I feel right now.
I have trouble telling people how I really feel. People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal. I do let some people know but it is hard not to say 'fine' when I am asked. Do they really want to hear the real answers? Do they really want to plumb the depth of things that I am dealing with? I know people care but it is hard to get away from 'fine'.
I have the new perc tube with the associated drainage bag. I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney. I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.
Recovery is not what it used to be for me. I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully. These last few incidents have been far from bouncing back. These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.
I have given up on playing hockey for the foreseeable future. My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing. I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.
I haven't given up on skiing yet. I think a 6 run day now would be right at the limit of my capabilities. I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.
So, I am not fine but I am trying to get there. If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.
I feel as if I am right back where I was in June after that marathon surgery. My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding. I am not fine and I feel like the mountains just keep growing in front of me. Stephanie saw someone else's blog post and it fits the way I feel right now.
I have trouble telling people how I really feel. People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal. I do let some people know but it is hard not to say 'fine' when I am asked. Do they really want to hear the real answers? Do they really want to plumb the depth of things that I am dealing with? I know people care but it is hard to get away from 'fine'.
I have the new perc tube with the associated drainage bag. I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney. I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.
Recovery is not what it used to be for me. I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully. These last few incidents have been far from bouncing back. These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.
I have given up on playing hockey for the foreseeable future. My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing. I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.
I haven't given up on skiing yet. I think a 6 run day now would be right at the limit of my capabilities. I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.
So, I am not fine but I am trying to get there. If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.
Sunday, November 15, 2015
One more procedure and then home (I hope)
The procedures we were planning on doing last Wednesday had a bit of a hiccup. The urologist was able to insert the left stent with no problem but the right stent would not go. Finally, they called in an interventional radiologist and put a percutaneous nephrostomy tube in the right kidney.
Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time. The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).
Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis. Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week. They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.
So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below. Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors. If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.
Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol. This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass. Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors. The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.
So, we sit and wait today for the procedure tomorrow. My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling. Hopefully back in the Springs by Wednesday!
Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time. The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).
Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis. Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week. They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.
So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below. Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors. If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.
Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol. This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass. Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors. The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.
So, we sit and wait today for the procedure tomorrow. My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling. Hopefully back in the Springs by Wednesday!
Thursday, November 12, 2015
Trapped in NOLA again
Stephanie was worried Tuesday that the wouldn't let us go after the procedures but I assured her that that would not happen but here we are, trapped for a while in NOLA.
Th procedures did not go as planned big time. The stent swap went well for the left kidney but the right caused problems. The stent that was in there did not appear to be allowing the kidney to drain and it was full of liquid. About 150 ccs of the liquid was dark brown and they think it was old blood but are doing culture on it to make sure. The culture will tell us in 48 hrs if it is infected or not and then another 24 hrs if it is infected to find a treatment.
I do have a temporary percutaneous nephrostomy tube in my right side and it does indicate that the kidney is at least producing urine so we are hoping that it is also filtering the blood and labs should show that. Of course, that takes a few days to find out.
So, we are trapped here again. If the kidney is functioning, we need to find a way to help it drain. If it is not draining we need to decide what to do with it. Leaving it in may lead to infection so they may want to do surgery to remove it or they may not. We just don't know at this point. Hopefully we will at least be able to leave the ICU today or tomorrow and be in the nice rooms on the fifth floor.
It sucks. We did not plan for this and thought the worst case had us coming home on Monday because the prices for flights. Now we may be doing a procedure on Monday. It really sucks. Steph just started a new job and they knew she was going to be out this week but now things are up in the air and that puts strain on her and her job. It really sucks the big one.
Those tumors on the rectum are large and appear to be pushing against the prostate and other organs. We don't know when we will be able to address them or if they are treatable. Just one more thing that sucks about this trip.d
One thing that was good was our meal Monday night at the red fish grill. We ordered the crab cake and the grilled red fish and it was one of the best meals I have ever had. It was on the pricy side but it was phenomenal.
Th procedures did not go as planned big time. The stent swap went well for the left kidney but the right caused problems. The stent that was in there did not appear to be allowing the kidney to drain and it was full of liquid. About 150 ccs of the liquid was dark brown and they think it was old blood but are doing culture on it to make sure. The culture will tell us in 48 hrs if it is infected or not and then another 24 hrs if it is infected to find a treatment.
I do have a temporary percutaneous nephrostomy tube in my right side and it does indicate that the kidney is at least producing urine so we are hoping that it is also filtering the blood and labs should show that. Of course, that takes a few days to find out.
So, we are trapped here again. If the kidney is functioning, we need to find a way to help it drain. If it is not draining we need to decide what to do with it. Leaving it in may lead to infection so they may want to do surgery to remove it or they may not. We just don't know at this point. Hopefully we will at least be able to leave the ICU today or tomorrow and be in the nice rooms on the fifth floor.
It sucks. We did not plan for this and thought the worst case had us coming home on Monday because the prices for flights. Now we may be doing a procedure on Monday. It really sucks. Steph just started a new job and they knew she was going to be out this week but now things are up in the air and that puts strain on her and her job. It really sucks the big one.
Those tumors on the rectum are large and appear to be pushing against the prostate and other organs. We don't know when we will be able to address them or if they are treatable. Just one more thing that sucks about this trip.d
One thing that was good was our meal Monday night at the red fish grill. We ordered the crab cake and the grilled red fish and it was one of the best meals I have ever had. It was on the pricy side but it was phenomenal.
Monday, October 26, 2015
On my way home again
Today, Monday the 26th, I have been released from the hospital again. I talked to the doctors about what happened and they believe that the scar tissue has caused some tight corners in my bowels and that these tight corners can lead to intermittent obstructions. When these obstructions occur, I need to get to the hospital, get my favorite NG tube (hopefully after 3mg of dilauted again) and wait out the obstruction.
The NG tube should decrease the pressure on the obstruction from above while slowly releasing from the bottom until it is gone again and I am back to normal. This is not a great way to live but it is a life and I can move forward with this. I am hoping to get back on TPN for a period of time to help regain some body mass, supplementing what I am able to consume orally.
I have a flight out of NOLA tomorrow which is actually relatively cheap at $140 with a layover in Houston on United. I can spend the next two weeks recovering from this episode before coming back down to get the tumors around the rectum zapped. While down here, we will also take advantage of my being in the hospital to swap out my ureteral stents as well.
So, this means returning to full time work is delayed again. I feel like a slug but noticed today that my legs started to collapse when I tried running across the street. It is difficult to look so normal in so many respects but to have such a depleted body in so many other ways. I know I need to heal and I know people understand but I find it difficult to accept.
I so appreciate having the handicapped parking permit but often feel a bit like a poseur when I use it. Other times, I am so appreciative of it when I have a hard time just making it to the car after work. A few weeks ago, I thought the wind was going to prevent me from making that walk but I did it and was thankful for it.
It makes me think of all those times I judged people with their permits who 'looked' OK but, from my high horse, I could not see their problems. We need to ensure that we don't judge people we don't know. Until we are in their shoes, we don't know what problems they are dealing with or what their reasons for having that permit. I need to watch this and I pray that you also try to avoid judging people that you don't know.
I will be home soon. I Missed my wife and kids terribly. Stephanie sent me flowers that were beautiful and I was able to then give them to a nurse today who said she did not get anything for her birthday this year. Hope that this made her day brighter for having (vicariously), known the wonderful and beautiful woman that is my wife and my light: Stephanie.
The NG tube should decrease the pressure on the obstruction from above while slowly releasing from the bottom until it is gone again and I am back to normal. This is not a great way to live but it is a life and I can move forward with this. I am hoping to get back on TPN for a period of time to help regain some body mass, supplementing what I am able to consume orally.
I have a flight out of NOLA tomorrow which is actually relatively cheap at $140 with a layover in Houston on United. I can spend the next two weeks recovering from this episode before coming back down to get the tumors around the rectum zapped. While down here, we will also take advantage of my being in the hospital to swap out my ureteral stents as well.
So, this means returning to full time work is delayed again. I feel like a slug but noticed today that my legs started to collapse when I tried running across the street. It is difficult to look so normal in so many respects but to have such a depleted body in so many other ways. I know I need to heal and I know people understand but I find it difficult to accept.
I so appreciate having the handicapped parking permit but often feel a bit like a poseur when I use it. Other times, I am so appreciative of it when I have a hard time just making it to the car after work. A few weeks ago, I thought the wind was going to prevent me from making that walk but I did it and was thankful for it.
It makes me think of all those times I judged people with their permits who 'looked' OK but, from my high horse, I could not see their problems. We need to ensure that we don't judge people we don't know. Until we are in their shoes, we don't know what problems they are dealing with or what their reasons for having that permit. I need to watch this and I pray that you also try to avoid judging people that you don't know.
I will be home soon. I Missed my wife and kids terribly. Stephanie sent me flowers that were beautiful and I was able to then give them to a nurse today who said she did not get anything for her birthday this year. Hope that this made her day brighter for having (vicariously), known the wonderful and beautiful woman that is my wife and my light: Stephanie.
Thursday, October 22, 2015
Obstruction time again sort of
The last month has been a continual degradation of my condition as another bowel obstruction has set in. There were many clues along the way but it has resulted in my weight dropping below 140 pounds now which is way too low. I have also experienced vomiting of undigested food, severe abdominal cramps, and lack of appetite.
On 10/15, I had a CT to try and see if I have and obstruction but the results were inconclusive. Finally, on Monday, 10/19 we made the decision to come out to NOLA and just see what we can get accomplished out here. For the first time, I have come out here alone while Stephanie is at home with the kids and her new job.
In this initial phase, there is little to no risk of complications so there is no huge need for Stephanie to be here. If things to start to change to where surgery becomes a plan, then Stephanie will come out here and we will head back into that dark place again together. Until then, it is just me and my thoughts here in the hospital room.
On the positive side, they did do an X-ray in the ER and have confirmed our suspicions of a bowel obstruction! They then put in an NG tube (still hate those) to try and decompress my bowels from above while waiting for the obstruction to pass. I have not yet been started on IV nutrition (TPN) yet but hope that will be coming soon. I also have not yet seen the doctor, only his resident at this point. I know he was in surgery all day yesterday and usually has more surgeries on Thursday so I don't know when we will encounter each other.
I got to see the surgeon on Thursday and he ordered a small bowel follow through test. This test involves swallowing some barium and then taking x-rays at 20 minute intervals to follow its passage through the bowels. Back in April, I had this test and it took about 8 hrs to make it through when a 'normal' passage time is between one and two hours. Wouldn't you know it, it passes in a little less than three hours. I haven't seen the doctor again nor read the report but this seems to imply the obstruction has eased. Perhaps I can eat soon!
These sorts of situations can happen. With the lack of eating and the NG tube relieving pressure from above, the bowels can relax and the obstruction can release. I don't know if it will happen again or what to do next time it occurs but we need to find a way to work with this without me losing a great deal of weight again. Perhaps we do TPN as a supplement to normal eating so that I don't end up losing as much weight and am able to maintain a more healthy level. I don't know but will post an update when I learn more.
It suck but here we are and this is what we have to deal with. You play the cards you are dealt, not the cards you wish you had and that is what we will do. I miss my wife and kids but will get to see all of them soon. Until then, bad TV, books, and sleep.
On 10/15, I had a CT to try and see if I have and obstruction but the results were inconclusive. Finally, on Monday, 10/19 we made the decision to come out to NOLA and just see what we can get accomplished out here. For the first time, I have come out here alone while Stephanie is at home with the kids and her new job.
In this initial phase, there is little to no risk of complications so there is no huge need for Stephanie to be here. If things to start to change to where surgery becomes a plan, then Stephanie will come out here and we will head back into that dark place again together. Until then, it is just me and my thoughts here in the hospital room.
On the positive side, they did do an X-ray in the ER and have confirmed our suspicions of a bowel obstruction! They then put in an NG tube (still hate those) to try and decompress my bowels from above while waiting for the obstruction to pass. I have not yet been started on IV nutrition (TPN) yet but hope that will be coming soon. I also have not yet seen the doctor, only his resident at this point. I know he was in surgery all day yesterday and usually has more surgeries on Thursday so I don't know when we will encounter each other.
I got to see the surgeon on Thursday and he ordered a small bowel follow through test. This test involves swallowing some barium and then taking x-rays at 20 minute intervals to follow its passage through the bowels. Back in April, I had this test and it took about 8 hrs to make it through when a 'normal' passage time is between one and two hours. Wouldn't you know it, it passes in a little less than three hours. I haven't seen the doctor again nor read the report but this seems to imply the obstruction has eased. Perhaps I can eat soon!
These sorts of situations can happen. With the lack of eating and the NG tube relieving pressure from above, the bowels can relax and the obstruction can release. I don't know if it will happen again or what to do next time it occurs but we need to find a way to work with this without me losing a great deal of weight again. Perhaps we do TPN as a supplement to normal eating so that I don't end up losing as much weight and am able to maintain a more healthy level. I don't know but will post an update when I learn more.
It suck but here we are and this is what we have to deal with. You play the cards you are dealt, not the cards you wish you had and that is what we will do. I miss my wife and kids but will get to see all of them soon. Until then, bad TV, books, and sleep.
Tuesday, August 25, 2015
Lots of minor surgeries planned
Today is August 25th, 11 weeks post surgery and we had a checkup with the surgeon, Dr. Boudreaux. He is very pleased with my progress and reiterated that recovery would be very slow, given the 15% weight loss prior to surgery along with the 14hrs of prolonged surgery, 4 units of blood, and 2 weeks post hospital stay. I continue to desire faster and greater recovery but must live with what I have been able to accomplish.
On the plus side, he has written me an authorization for a return to work on September 8th as tolerated. I plan to start back to work on the 8th, doing 20hr days, working a 9-1 schedule, working in all my doctors, PT, and other appointments in the afternoon. This also gives me plenty of time to nap in the afternoon if needed and to take a slow start to the workday in the morning.
As to the future, we are currently planning short simple surgeries to address the tumors around the rectum. We will be performing minimally invasive surgery using nanoknife with an entrance through the anus to try and ablate the tumors as much as possible. There is so little room in the pelvis to work, the hope is to reduce the size of the tumors with the minimally invasive surgery so that a major surgery has much less to do when/if it occurs.
This surgery is scheduled for November 11th with an MRI on November 9th and a clinic appointment on the 10th. Surgery will then be on the 11th if possible or the 13th if not. Potentially, I could be released the day after surgery but Dr. Boudreaux is planning on keeping me in the hospital a few days as we ween me off of the Sandostatin drip.
The advantage of using nanoknife is that the only external wound I will receive will be large needle pokes through the wall of the rectum. Since I currently have an ostomy, there is little possibility of infection and the healing is very quick. Nanoknife works well for ablating tissue in sensitive areas as the area between the ablated tissue and the non ablated tissue is very sharp, allowing one to get close to good tissue without damaging it. Of course, it still is surgery and that always caries risk but this, compared to the 14hrs two months ago is almost a walk in the park.
If this is successful, we may return for treatment every 3 months or so and evaluate when a major surgery may take place to complete the debulking and to address the ureter. This could be next summer but we don't know much at this time.
So, in two weeks, I head back to work and life starts another big step forward. Thanks for all the support so far and the well wishes that I have received. Now to get back home and out of this insanely oppressive New Orleans heat/humidity!
On the plus side, he has written me an authorization for a return to work on September 8th as tolerated. I plan to start back to work on the 8th, doing 20hr days, working a 9-1 schedule, working in all my doctors, PT, and other appointments in the afternoon. This also gives me plenty of time to nap in the afternoon if needed and to take a slow start to the workday in the morning.
As to the future, we are currently planning short simple surgeries to address the tumors around the rectum. We will be performing minimally invasive surgery using nanoknife with an entrance through the anus to try and ablate the tumors as much as possible. There is so little room in the pelvis to work, the hope is to reduce the size of the tumors with the minimally invasive surgery so that a major surgery has much less to do when/if it occurs.
This surgery is scheduled for November 11th with an MRI on November 9th and a clinic appointment on the 10th. Surgery will then be on the 11th if possible or the 13th if not. Potentially, I could be released the day after surgery but Dr. Boudreaux is planning on keeping me in the hospital a few days as we ween me off of the Sandostatin drip.
The advantage of using nanoknife is that the only external wound I will receive will be large needle pokes through the wall of the rectum. Since I currently have an ostomy, there is little possibility of infection and the healing is very quick. Nanoknife works well for ablating tissue in sensitive areas as the area between the ablated tissue and the non ablated tissue is very sharp, allowing one to get close to good tissue without damaging it. Of course, it still is surgery and that always caries risk but this, compared to the 14hrs two months ago is almost a walk in the park.
If this is successful, we may return for treatment every 3 months or so and evaluate when a major surgery may take place to complete the debulking and to address the ureter. This could be next summer but we don't know much at this time.
So, in two weeks, I head back to work and life starts another big step forward. Thanks for all the support so far and the well wishes that I have received. Now to get back home and out of this insanely oppressive New Orleans heat/humidity!
Wednesday, August 12, 2015
Gaining strength and endurance
Recovery is progressing, probably at the rate that doctors may expect but at a rate slower than I desire. I left the hospital with all my muscles atrophied to an extent that I had not realized. My first walks at home were just three houses down the street and back home which took almost all I had. My arms have lost tremendous amounts of strength and that is saying something, given my lack of musculature that I had before the obstruction. Upon coming home, I was able to do only about 20 arm curls with my left arm with a less than 1 pound weight.
I am now able to make 2 mile walks, even with a significant hill coming back home. My arm curls have now progressed to 3 pound weights 30 times but it is a stretch getting to that 30th curl at this point. I am still very weak but I do see the progress and know that it is just going to be a matter of time until I am closer to whole again.
Stephanie and I head out to see the surgeon in New Orleans on the 25th of August and hope to get his clearance to return to work at least part time. shortly there after. I may delay it until after Labor day to ensure that I am able to tolerate both the time at work along with the drive and walk into work that I anticipate. That will mark 13 weeks post surgery which is still ahead of the rule of thumb of 1 week for every hour of surgery (14 in my case) but I have the months of lack of eating to make up for as well. That said, part time will be more tolerable than a full time schedule and is something that works well with the long term disability policy that Metron has provided.
I am also looking forward to playing hockey once again but that is dependent upon my regaining sufficient strength as well. I still have to struggle back to my feet when I am on my knees and I worry about how well I will or won't be able to move my glove hand (right arm) with the additional weight and resistance of goalie gear. The next session of hockey will likely start on August 31 but the next game is Labor day and I am hoping I may be able to return to the ice for that game. First, I need to try skating and perhaps go to a sticks and pucks session or two to evaluate my readiness.
The other issue causing me concern is my colostomy. Losing 25 or so pounds has changed my body shape quite a bit and it is causing issues with keeping things in place. I am experimenting with new products and new techniques, hoping that they can solve some of these issues which must be resolved before a return to work or hockey can occur.
I am being somewhat successful in eating which is a good thing. I am now up to about 146 pounds and am gaining weight at about half a pound a week. My stomach seems to be expanding again and I can eat more at a single setting than I could a month ago. I do also continue to consume supplements such as Ensure or protein bars and I try my best to plan my meals and food around calories and how this will benefit my weight gains.
Finally, I am receiving physical therapy to address the numbness and tingling in my left arm. The therapist always asks if things feel better and it is extremely hard to evaluate. The same way that it is difficult to notice someone's weight gains or losses on a day to day basis, it is difficult to evaluate these changes for me. Fortunately, on my first day of therapy, they performed some tests that have a definite ability to measure changes and we will re-evaluate the changes at a later point to give a measure of certainty. For now, I just need to believe that they are doing things that will help make my disability better.
Overall, things are looking up. I have come a long ways from the brutal surgery that I endured and the bizarre post-op period in the ICU. I am on my way to full recovery and look forward to seeing everyone at work and play!
I am now able to make 2 mile walks, even with a significant hill coming back home. My arm curls have now progressed to 3 pound weights 30 times but it is a stretch getting to that 30th curl at this point. I am still very weak but I do see the progress and know that it is just going to be a matter of time until I am closer to whole again.
Stephanie and I head out to see the surgeon in New Orleans on the 25th of August and hope to get his clearance to return to work at least part time. shortly there after. I may delay it until after Labor day to ensure that I am able to tolerate both the time at work along with the drive and walk into work that I anticipate. That will mark 13 weeks post surgery which is still ahead of the rule of thumb of 1 week for every hour of surgery (14 in my case) but I have the months of lack of eating to make up for as well. That said, part time will be more tolerable than a full time schedule and is something that works well with the long term disability policy that Metron has provided.
I am also looking forward to playing hockey once again but that is dependent upon my regaining sufficient strength as well. I still have to struggle back to my feet when I am on my knees and I worry about how well I will or won't be able to move my glove hand (right arm) with the additional weight and resistance of goalie gear. The next session of hockey will likely start on August 31 but the next game is Labor day and I am hoping I may be able to return to the ice for that game. First, I need to try skating and perhaps go to a sticks and pucks session or two to evaluate my readiness.
The other issue causing me concern is my colostomy. Losing 25 or so pounds has changed my body shape quite a bit and it is causing issues with keeping things in place. I am experimenting with new products and new techniques, hoping that they can solve some of these issues which must be resolved before a return to work or hockey can occur.
I am being somewhat successful in eating which is a good thing. I am now up to about 146 pounds and am gaining weight at about half a pound a week. My stomach seems to be expanding again and I can eat more at a single setting than I could a month ago. I do also continue to consume supplements such as Ensure or protein bars and I try my best to plan my meals and food around calories and how this will benefit my weight gains.
Finally, I am receiving physical therapy to address the numbness and tingling in my left arm. The therapist always asks if things feel better and it is extremely hard to evaluate. The same way that it is difficult to notice someone's weight gains or losses on a day to day basis, it is difficult to evaluate these changes for me. Fortunately, on my first day of therapy, they performed some tests that have a definite ability to measure changes and we will re-evaluate the changes at a later point to give a measure of certainty. For now, I just need to believe that they are doing things that will help make my disability better.
Overall, things are looking up. I have come a long ways from the brutal surgery that I endured and the bizarre post-op period in the ICU. I am on my way to full recovery and look forward to seeing everyone at work and play!
Monday, July 20, 2015
Prolonged recovery
Surgery was 6/11, 5 weeks ago and recovery is very slow. After my surgeries in 2002, 2008, I was back to 100% 6 weeks after surgery and playing hockey. The 2012 surgeries had 10 week recoveries and, after the second 2012 surgery, I went on a big ski trip, again running at 100% with no obvious problems.
This one is not like the others. We are 6 weeks post surgery and I have successfully made a half mile walk but it was at my limit. I still take (often twice) daily naps due to fatigue of recovery and think I have finally gotten through the water retention and associated swelling.
My weight currently is now about 143 which is 20 pounds less than I was 6 months ago. I am eating as much as I can but my stomach has shrunk and volume is difficult so I am having to eat lots of small meals, kind of continual eating. Regaining the weight and muscle mass is something I have to work at now.
How long will recovery be? I have heard a rule of thumb that one should expect one week of recovery time for every hour of surgery. This means I should be expecting about 14 weeks of recovery which puts me right at the start of September for a return to more normal behavior. I think that that is probable but am thinking it may be a graduated return, starting at half time and working my way up to full time over a matter of weeks.
Today was a pretty good day and makes me think it is possible but I have bad days as well. My arm is slowly strengthening but has a ways to go and the numbness and tingling is still there. My walks are slowly lengthening and the speed is increasing.
First week of September is 12 weeks post surgery but I think it is doable. This is indeed quite prolonged but, 6 weeks out, it looks possible.
This one is not like the others. We are 6 weeks post surgery and I have successfully made a half mile walk but it was at my limit. I still take (often twice) daily naps due to fatigue of recovery and think I have finally gotten through the water retention and associated swelling.
My weight currently is now about 143 which is 20 pounds less than I was 6 months ago. I am eating as much as I can but my stomach has shrunk and volume is difficult so I am having to eat lots of small meals, kind of continual eating. Regaining the weight and muscle mass is something I have to work at now.
How long will recovery be? I have heard a rule of thumb that one should expect one week of recovery time for every hour of surgery. This means I should be expecting about 14 weeks of recovery which puts me right at the start of September for a return to more normal behavior. I think that that is probable but am thinking it may be a graduated return, starting at half time and working my way up to full time over a matter of weeks.
Today was a pretty good day and makes me think it is possible but I have bad days as well. My arm is slowly strengthening but has a ways to go and the numbness and tingling is still there. My walks are slowly lengthening and the speed is increasing.
First week of September is 12 weeks post surgery but I think it is doable. This is indeed quite prolonged but, 6 weeks out, it looks possible.
Saturday, July 4, 2015
5 weeks gone, one week home
We went to NOLA this year in late May, expecting to be home around June 10th but those plans got destroyed when I got to the clinic on May 26th. I am going to try to give a recap of the past 6 weeks but Stephanie has alot of more accurate info at her caring bridge journal.
5/26 Clinic. Dr Boudreaux was about 2hrs late (probably due to surgeries the day before) but we did not think about it because I was getting his full attention the next day. As we sat with him, he said no surgery tomorrow but possibly on 6/3. We did not know what to do with this information, got a sandostatin LAR shot and went back to the Hope lodge before my hospital admission the next day.
5/27 Enter hospital on though ER onto the 5th floor. Begin daily 5 sub-q shots as we try to rebuild my strength, reduce anemia and provide some growth hormone for the future surgery.
6/1 surgery again delayed due to my weakness but is now planned for 6/8. Stephanie is going out of her mind coming to and from the hospital
~6/1 NG tube inserted and will be my 'friend' for the next couple of weeks.
6/9 I 'wake up' in ICU intubated and start my path into insanity. I don't know how many days I was intubated but had various visions of small girls playing under my bed, my arrival in SE Asia, my room changing with straps behind me and a door in front of me and all sorts of loss of reality. I lost my mind and it is one of the things I most value about myself
~6/11 intubation comes out and I pull out my NG tube. I don't remember the new NG tube going in but it did and would not come out again for almost two more weeks.
6/17 Stephanie and I both wonder how long we are going to be in ICU and are finally released to the 5th floor on 6/18
6/18, released to 5th floor in the morning but don't get there until almost 8:30 in the evening and start liquid diet and don't know how you ruin Jello but, somehow, oschner, kenner ruined it. I get tired of cranberry juice and continue the liquid diet for days but continue to keep food down in spite of the NG tube, only having to empty occasionally.
6/20, start full liquid diet and, again, am amazed at the horrid state of the hospital food. Penrose hospital here in the Springs has provided some good food but Kenner is horrid.
6/23 start real food and have some of the worst 'meatloaf' I have ever experienced.
6/27, Dr. Boudreaux asks if I want to leave the hospital today or tomorrow and we are adamant that today is the day. Stephanie makes plane reservations home out of Baton Rouge airport for Sunday and we leave the hospital. My first time really outside in about 5 weeks.
Stephanie had gotten the whole family at our house for a 'skype' meeting because I need some support and her best friend Steph Schwenke picked us up at the airport and brought us home at about 5:30. Walking in the house and surprising everyone was the most joyous moments in the previous 5 weeks.
When can I get back to work? I have a target of 8/1 and will see if that is full or part time. When do I play hockey again? I don't know but would like to try skating before the end of July and perhaps split a game with someone else in mid August.
These last few months have really ravaged my body and I need to work to get better again. I will get there and my mind is starting to clear. I have been watching American Ninja Warrior and there are so many inspirational stories that help me work through my own efforts.
It is wonderful to be home. It is hot but not humid. I love my mountains, the clear sky and my wife's beautiful gardens in the back and front yards. I don't have an IV continually connected to me and can just get up and walk. I got my hair cut yesterday for the first time in 3 months and trimmed my beard for the first time in a month and almost look normal again.
I am alive. I have a wonderful family and my parents took wonderful care of my kids. Life is good.
Pre surgery:
5/25, arrive NOLA5/26 Clinic. Dr Boudreaux was about 2hrs late (probably due to surgeries the day before) but we did not think about it because I was getting his full attention the next day. As we sat with him, he said no surgery tomorrow but possibly on 6/3. We did not know what to do with this information, got a sandostatin LAR shot and went back to the Hope lodge before my hospital admission the next day.
5/27 Enter hospital on though ER onto the 5th floor. Begin daily 5 sub-q shots as we try to rebuild my strength, reduce anemia and provide some growth hormone for the future surgery.
6/1 surgery again delayed due to my weakness but is now planned for 6/8. Stephanie is going out of her mind coming to and from the hospital
~6/1 NG tube inserted and will be my 'friend' for the next couple of weeks.
Surgery. Finally.
6/8 finally arrives and I go down for surgery about 8:00. Surgery starts at about 9am and runs for 13.5 straight hours with 67 tumors removed and my intestines back to a healthy pink color. My ureters are not touched nor my colostomy but 14 hrs of surgery is pretty extreme.6/9 I 'wake up' in ICU intubated and start my path into insanity. I don't know how many days I was intubated but had various visions of small girls playing under my bed, my arrival in SE Asia, my room changing with straps behind me and a door in front of me and all sorts of loss of reality. I lost my mind and it is one of the things I most value about myself
~6/11 intubation comes out and I pull out my NG tube. I don't remember the new NG tube going in but it did and would not come out again for almost two more weeks.
6/17 Stephanie and I both wonder how long we are going to be in ICU and are finally released to the 5th floor on 6/18
Out of ICU
6/18, released to 5th floor in the morning but don't get there until almost 8:30 in the evening and start liquid diet and don't know how you ruin Jello but, somehow, oschner, kenner ruined it. I get tired of cranberry juice and continue the liquid diet for days but continue to keep food down in spite of the NG tube, only having to empty occasionally.
6/20, start full liquid diet and, again, am amazed at the horrid state of the hospital food. Penrose hospital here in the Springs has provided some good food but Kenner is horrid.
6/23 start real food and have some of the worst 'meatloaf' I have ever experienced.
6/27, Dr. Boudreaux asks if I want to leave the hospital today or tomorrow and we are adamant that today is the day. Stephanie makes plane reservations home out of Baton Rouge airport for Sunday and we leave the hospital. My first time really outside in about 5 weeks.
Home:
6/28 starts with Ihop for breakfast, two pancakes and 4 pieces of bacon. It was wonderful. We then start driving to Baton Rouge (about an hour) and get there about 10am. Catch our flight around noon and transfer in Houston. Delayed in Houston for an hour and leave about 3:20. Finally arrive in Colorado Springs just before 5:00.Stephanie had gotten the whole family at our house for a 'skype' meeting because I need some support and her best friend Steph Schwenke picked us up at the airport and brought us home at about 5:30. Walking in the house and surprising everyone was the most joyous moments in the previous 5 weeks.
Recovery:
This last week has been rough. My left bicep has atrophied considerably in the hospital and I can barely hold my arm up with anything. I have been around the block twice and it has almost taken everything I have to make it back home. My water retention has been improving with my losing about 12 pounds in the last week of water weight. I sit at about 162 pounds right now and have a great deal of strength to recover before returning to work and fun.When can I get back to work? I have a target of 8/1 and will see if that is full or part time. When do I play hockey again? I don't know but would like to try skating before the end of July and perhaps split a game with someone else in mid August.
These last few months have really ravaged my body and I need to work to get better again. I will get there and my mind is starting to clear. I have been watching American Ninja Warrior and there are so many inspirational stories that help me work through my own efforts.
It is wonderful to be home. It is hot but not humid. I love my mountains, the clear sky and my wife's beautiful gardens in the back and front yards. I don't have an IV continually connected to me and can just get up and walk. I got my hair cut yesterday for the first time in 3 months and trimmed my beard for the first time in a month and almost look normal again.
I am alive. I have a wonderful family and my parents took wonderful care of my kids. Life is good.
Wednesday, June 17, 2015
Finally back up in the main hospital building.
This one was brutal. I had surgery on the 8th and this was another 14 hour enormity. I don't recall many of the details but the tumors had once again entangled the intestines and a total of 64 or so tumors were removed. I also got the new experience of coming out from surgery with an intubation, doing all my breathing and preventing me from talking.
I went nuts. I was losing my mind. I thought I was in another part of the world, I could not identify truth from fiction and I weaved extraordinary story lines in my mind. They had to restrain me to keep me from pulling out the tube and, once the tube came out, I then went psychotic again an pulled out my NG tube, forcing them to put in another one.
I have never felt so helpless or scared in my life. What is a person if not for their mind and I could not find mine.
Additionally, my left arm has gone partially numb from about mid-forearm through the thumb and first two fingers. It is weak and I am working on trying to restore it to normalcy (or something close to it).
We finally got moved out of ICU yesterday and are now in a nice comfortable 5th floor room. I am still having extreme trouble sleeping and focussing but things are slowly moving forward. I have started clear liquids and hope to progress to full liquids soon.
That is about all I can write at this point but want to let everyone know what we are slowly progressing. Returning home will probably not be for a week or more yet but I am up and I can walk. Looking forward to seeing everyone soon!
--Ron
I went nuts. I was losing my mind. I thought I was in another part of the world, I could not identify truth from fiction and I weaved extraordinary story lines in my mind. They had to restrain me to keep me from pulling out the tube and, once the tube came out, I then went psychotic again an pulled out my NG tube, forcing them to put in another one.
I have never felt so helpless or scared in my life. What is a person if not for their mind and I could not find mine.
Additionally, my left arm has gone partially numb from about mid-forearm through the thumb and first two fingers. It is weak and I am working on trying to restore it to normalcy (or something close to it).
We finally got moved out of ICU yesterday and are now in a nice comfortable 5th floor room. I am still having extreme trouble sleeping and focussing but things are slowly moving forward. I have started clear liquids and hope to progress to full liquids soon.
That is about all I can write at this point but want to let everyone know what we are slowly progressing. Returning home will probably not be for a week or more yet but I am up and I can walk. Looking forward to seeing everyone soon!
--Ron
Sunday, June 7, 2015
I think we are go for surgery this time
Everything is looking up for a surgery on Monday. Dr. Boudreaux came through on Friday and said that he is pleased with how things are progressing. The Horrid NG tube has drained off over 2 liters of liquid which means that he will have that much less in my bowels to fight through. He also took out the chest tube on Friday which has made my days a bit more comfortable.
The NG tube is still my nemesis. I have had it in since Tuesday night and not a single day has been pleasant with it. It makes swallowing hurt. I have trouble talking because that hurts as well. If I lift or turn my head much at all, it hurts. I know I will have it in surgery and will wake with it. If history holds true, it may not come out until Thursday.
For the surgical consent, his list of goals included freeing up intestines, possible resection, possible tumor rebulking, possible ureter repair or rerouting, and possible colostomy reversal. Friday also included a CT of the rectum to see how difficult reversal may or may not be. Everything he want to do would improve my situation from eating, to digesting, to kidneys and to pooping. Hopefully he is successful and able to achieve a good portion of that list.
We have no idea what time surgery will be as we are the second surgery of the day and need to wait for the OR. Again, it will be almost painful to wait these hours since you don't know when they will end and there is always the fear that things will get too late and they will delay it again. I don't think this is will be the case but I cannot stop thinking about it.
Today, the other surgeon that will be assisting Dr. Boudreaux came through and I did not catch his name but he appears new to the neuroendocrine clinic. Surgery should be late morning and it is going to be a long wait.
Obviously, I will not be posting again for the next few days so I want to refer you do my wife's caring bridge site where she will be posting updates as to progress both for her and for me in these next days. Feel free to send some good vibrations her way as there is so much she wants to do to help even though there is nothing she can do.
The NG tube is still my nemesis. I have had it in since Tuesday night and not a single day has been pleasant with it. It makes swallowing hurt. I have trouble talking because that hurts as well. If I lift or turn my head much at all, it hurts. I know I will have it in surgery and will wake with it. If history holds true, it may not come out until Thursday.
For the surgical consent, his list of goals included freeing up intestines, possible resection, possible tumor rebulking, possible ureter repair or rerouting, and possible colostomy reversal. Friday also included a CT of the rectum to see how difficult reversal may or may not be. Everything he want to do would improve my situation from eating, to digesting, to kidneys and to pooping. Hopefully he is successful and able to achieve a good portion of that list.
We have no idea what time surgery will be as we are the second surgery of the day and need to wait for the OR. Again, it will be almost painful to wait these hours since you don't know when they will end and there is always the fear that things will get too late and they will delay it again. I don't think this is will be the case but I cannot stop thinking about it.
Today, the other surgeon that will be assisting Dr. Boudreaux came through and I did not catch his name but he appears new to the neuroendocrine clinic. Surgery should be late morning and it is going to be a long wait.
Obviously, I will not be posting again for the next few days so I want to refer you do my wife's caring bridge site where she will be posting updates as to progress both for her and for me in these next days. Feel free to send some good vibrations her way as there is so much she wants to do to help even though there is nothing she can do.
Tuesday, June 2, 2015
Ready, Set, Delay...
I don't know if you can imagine how hard it is to write this post. We arrived in NOLA on 5/25, expecting to have surgery on 5/27. That was then delayed to tomorrow, 6/3 so that I could get stronger before the procedure. Well, I am not stronger enough yet and we are delaying once more.
Right now, the target is Monday June 8th and there are a number of reasons. First, my prealbumen blood level is lower than desired. Prealbumen is a measure of nutritional sufficiency and mine is not as high as they want prior to surgery. Second, I am severely anemic right now with a hemoglobin level of 8. I don't know how it dropped so crazy low but that is a very bad place to be in and they are working hard to raise that with EPO shots and iron infusions. Finally, I have developed a pneumothorax.
You may remember my post about putting in the chest tube to drain the pleural efflusion. Well, it is draining but, at the same time, a non trivial amount of air has taken its place and this is what is known as a pneumothorax. Today, they swapped out the old hose for a larger one, hoping this would help and they are going to have a cardio-thorasic surgeon look at the x-rays to see if there is something he can do to help.
For me, all this means is yet another delay. Five more days. The days keep getting tacked on and I don't know when it will end. We could get to Monday and he could still want to delay again. I know he is weighing the risk of surgery versus the potential with an improvement in health but I am having a hard time handling it.
Tonight, I understand I will finally be getting the NG tube. I have dreaded this but he will be giving some additional meds to help me through the procedure of getting it inserted while conscious. I don't know what other violations I will be experiencing over the next few days but a lot can happen in 5 days that I just can't imagine.
Five more days. Stephanie keeps me upright while I am here struggling and the thought of returning to my kids must be kept up front of my mind as well. I will make it but it is getting exceptionally difficult. I appreciate all the emails of support and well wishes and hope I can bring better news on Sunday night.
Right now, the target is Monday June 8th and there are a number of reasons. First, my prealbumen blood level is lower than desired. Prealbumen is a measure of nutritional sufficiency and mine is not as high as they want prior to surgery. Second, I am severely anemic right now with a hemoglobin level of 8. I don't know how it dropped so crazy low but that is a very bad place to be in and they are working hard to raise that with EPO shots and iron infusions. Finally, I have developed a pneumothorax.
You may remember my post about putting in the chest tube to drain the pleural efflusion. Well, it is draining but, at the same time, a non trivial amount of air has taken its place and this is what is known as a pneumothorax. Today, they swapped out the old hose for a larger one, hoping this would help and they are going to have a cardio-thorasic surgeon look at the x-rays to see if there is something he can do to help.
For me, all this means is yet another delay. Five more days. The days keep getting tacked on and I don't know when it will end. We could get to Monday and he could still want to delay again. I know he is weighing the risk of surgery versus the potential with an improvement in health but I am having a hard time handling it.
Tonight, I understand I will finally be getting the NG tube. I have dreaded this but he will be giving some additional meds to help me through the procedure of getting it inserted while conscious. I don't know what other violations I will be experiencing over the next few days but a lot can happen in 5 days that I just can't imagine.
Five more days. Stephanie keeps me upright while I am here struggling and the thought of returning to my kids must be kept up front of my mind as well. I will make it but it is getting exceptionally difficult. I appreciate all the emails of support and well wishes and hope I can bring better news on Sunday night.
Friday, May 29, 2015
Two days down, five to go
We slowly advance time here in NOLA and it never seems to advance fast enough. We got moved across the building to one of the new larger rooms which is wonderful. The other rooms were renovated but there was no room for Stephanie to be with me, especially when she stays the night. We think we are actually in the very same room that we occupied when we came to NOLA for the first time ever back in April of 2012.
I still don't have an NG tube and, as long as I don't throw up, Dr. Boudreaux is going to delay giving me one. My bowels are continuing to decompress from the bottom as more and more diarrhea is expelled and I don't add anything other than gastric juices to the top end. Hopefully I will be able to delay the NG tube until the day of surgery and not have to get one inserted while conscious nor have more time with it in me than necessary.
On the negative side, he is concerned about the fluid on my lungs and wants me to be as strong as possible. So, we drained fluid on Thursday and added a chest tube to continue draining the lung. The draining was done under a vacuum and caused my shoulder to tense up worse than I can remember. The pain scale that they ask you to use is 0 (no pain) to 10 (worst pain you can imagine) and this easily hit a 9 for a period of time before backing off to a 7. They then gave me some toradol which brought it down to a 5.
Of course, then night came and I needed to figure out how to sleep with this thing in my back. Sleeping on my left side causes my shoulder to hurt, sleeping on my back causes the tube to be uncomfortable and continue to hurt. My right side is difficult and requires careful positioning to avoid laying on hard plastic valves.
Sleep would not come, even with my 10:30 toradol shot. Finally, at 2am, I asked for something stronger and they paged the doctor. He gave me a 10/325 percocet which is what I take at home and I was able to get some sleep with that in my system. Percocet works but it is a narcotic and the big downside to narcotics for me is that it slows the digestive tract and that is one of the last things we want at this point. We want my gut to be as active as possible so that it drains and empties, decompressing before surgery.
I am getting TPN again at about 2200 calories/day and they are giving me daily growth hormone. Dr. Boudreaux will also be gave me some additional IV iron to help the EPO increase my hemoglobin production, again making me stronger for the surgery. Last I heard, my hemoglobin was in the area of 10+ when it is desired to be much higher. Hopefully the iron ignites with the EPO and gets my bone marrow hopping.
Just a couple more days is what I keep saying. It is getting closer and I will get the surgery. I know the days after the surgery will be even more difficult but the end will be in sight. I have already spoken with Steph about what I want to do WRT food after surgery. I want my traditional Popeye's mashed potatoes and gravy as soon as I can start taking solids along with one or two pieces of crispy dark meat chicken. I also would like a Pizza Hut personal Pan Pizza Supreme if she can find one because they are just the right size for my appetite and would taste delicious.
In 2012, I did not plan where to eat when I got out because I did not really know the area nor did I know what my appetite would be. I know now that my appetite will be limited so I can't eat too much but I want something that I have been craving for a while. It will sound disgusting to many but I want some McDonalds french fries. You know the ones, just out of the hot oil, crispy, golden brown with a good dusting of salt. I may want a bit more so I may just get a cheese burger. I would like a Big Mac but my appetite will not be equal to the task.
On a very positive note, Forrest graduated 8th grade yesterday and we got to watch it through the wonders of Skype. At times I feel like that scene from the Incredibles (see this scene at about 50 seconds on) where Bob is complaining about celebrating mediocrity but I am glad to see my son move on from middle school to high school. River (my daughter), took a wonderful picture of Forrest with his big brother. Both will be freshmen next year, Riley at CSU and Forrest at Discovery Canyon. I am very proud of both of them.
I still don't have an NG tube and, as long as I don't throw up, Dr. Boudreaux is going to delay giving me one. My bowels are continuing to decompress from the bottom as more and more diarrhea is expelled and I don't add anything other than gastric juices to the top end. Hopefully I will be able to delay the NG tube until the day of surgery and not have to get one inserted while conscious nor have more time with it in me than necessary.
On the negative side, he is concerned about the fluid on my lungs and wants me to be as strong as possible. So, we drained fluid on Thursday and added a chest tube to continue draining the lung. The draining was done under a vacuum and caused my shoulder to tense up worse than I can remember. The pain scale that they ask you to use is 0 (no pain) to 10 (worst pain you can imagine) and this easily hit a 9 for a period of time before backing off to a 7. They then gave me some toradol which brought it down to a 5.
Of course, then night came and I needed to figure out how to sleep with this thing in my back. Sleeping on my left side causes my shoulder to hurt, sleeping on my back causes the tube to be uncomfortable and continue to hurt. My right side is difficult and requires careful positioning to avoid laying on hard plastic valves.
Sleep would not come, even with my 10:30 toradol shot. Finally, at 2am, I asked for something stronger and they paged the doctor. He gave me a 10/325 percocet which is what I take at home and I was able to get some sleep with that in my system. Percocet works but it is a narcotic and the big downside to narcotics for me is that it slows the digestive tract and that is one of the last things we want at this point. We want my gut to be as active as possible so that it drains and empties, decompressing before surgery.
I am getting TPN again at about 2200 calories/day and they are giving me daily growth hormone. Dr. Boudreaux will also be gave me some additional IV iron to help the EPO increase my hemoglobin production, again making me stronger for the surgery. Last I heard, my hemoglobin was in the area of 10+ when it is desired to be much higher. Hopefully the iron ignites with the EPO and gets my bone marrow hopping.
Just a couple more days is what I keep saying. It is getting closer and I will get the surgery. I know the days after the surgery will be even more difficult but the end will be in sight. I have already spoken with Steph about what I want to do WRT food after surgery. I want my traditional Popeye's mashed potatoes and gravy as soon as I can start taking solids along with one or two pieces of crispy dark meat chicken. I also would like a Pizza Hut personal Pan Pizza Supreme if she can find one because they are just the right size for my appetite and would taste delicious.
In 2012, I did not plan where to eat when I got out because I did not really know the area nor did I know what my appetite would be. I know now that my appetite will be limited so I can't eat too much but I want something that I have been craving for a while. It will sound disgusting to many but I want some McDonalds french fries. You know the ones, just out of the hot oil, crispy, golden brown with a good dusting of salt. I may want a bit more so I may just get a cheese burger. I would like a Big Mac but my appetite will not be equal to the task.
On a very positive note, Forrest graduated 8th grade yesterday and we got to watch it through the wonders of Skype. At times I feel like that scene from the Incredibles (see this scene at about 50 seconds on) where Bob is complaining about celebrating mediocrity but I am glad to see my son move on from middle school to high school. River (my daughter), took a wonderful picture of Forrest with his big brother. Both will be freshmen next year, Riley at CSU and Forrest at Discovery Canyon. I am very proud of both of them.
Tuesday, May 26, 2015
Surgery tomorrow? Not quite...
It has been a rough two weeks since my last post simply because I am getting worn down from the hits. I have not been eating anything other than small sips of water in addition to the 2liters of TPN. My last 'food' was probably the Strawberry Jello snack I had on my birthday, May 17th. I tried eating one more time after that but my digestive tract had other ideas and the food came back up.
The blockage is certainly becoming more severe. I have had some stool movement (VERY watery with suspended material) so part of the intestine has been starting to decompress. Unfortunately, I am not in a position for surgery quite yet.
Dr. Boudreaux felt my abdomen and said it felt very blocked and scarred. Laying flat is difficult from the tightness and there are places where it is quite painful when he presses. Definitely obstructed and definitely in need of surgery but he needs me to improve in two ways.
First, he wants to insert an NG tube (I had one of these back in April of 2012 and they are damned uncomfortable to receive when conscious) to try and relieve some of the pressure on the bowel from the top side. This will make it easier to manipulate and safer for me and the surgery. Second, he wants to continue the TPN as well as start some additional shots to try end encourage protein usage.
The long and short of this is no surgery tomorrow. I had been counting on this for weeks now and keeping it in my sights as a day of relief but we are putting it off another week. I will be hitting the ER tomorrow and then transferred to a room for a week of in patient NG tube and TPN until surgery the follow Wednesday, June 2nd.
There is a funny symmetry to 2012 in that in 2012
I am losing it. I am at my limit and beyond with this last sequence. Have you noticed how many commercials are about food? Have you realized how much of social life revolves around food? I feel somewhat like an outcast with my inability to eat and my hunger cannot be satiated. I feel run down and tired and am having a hard time just going day to day right now.
At least the NG tube will stop the vomiting. At least the surgery is coming (although I said that before). At least I have my beautiful wife at my side. At least I have made it long enough to see my first born graduate high school. I just need to get past this mountain I have in front of me.
The blockage is certainly becoming more severe. I have had some stool movement (VERY watery with suspended material) so part of the intestine has been starting to decompress. Unfortunately, I am not in a position for surgery quite yet.
Dr. Boudreaux felt my abdomen and said it felt very blocked and scarred. Laying flat is difficult from the tightness and there are places where it is quite painful when he presses. Definitely obstructed and definitely in need of surgery but he needs me to improve in two ways.
First, he wants to insert an NG tube (I had one of these back in April of 2012 and they are damned uncomfortable to receive when conscious) to try and relieve some of the pressure on the bowel from the top side. This will make it easier to manipulate and safer for me and the surgery. Second, he wants to continue the TPN as well as start some additional shots to try end encourage protein usage.
The long and short of this is no surgery tomorrow. I had been counting on this for weeks now and keeping it in my sights as a day of relief but we are putting it off another week. I will be hitting the ER tomorrow and then transferred to a room for a week of in patient NG tube and TPN until surgery the follow Wednesday, June 2nd.
There is a funny symmetry to 2012 in that in 2012
- we came down on Memorial day (check)
- had clinic on the day after memorial day (check),
- surgery on 5/31, 6/1, and 6/2.
I am losing it. I am at my limit and beyond with this last sequence. Have you noticed how many commercials are about food? Have you realized how much of social life revolves around food? I feel somewhat like an outcast with my inability to eat and my hunger cannot be satiated. I feel run down and tired and am having a hard time just going day to day right now.
At least the NG tube will stop the vomiting. At least the surgery is coming (although I said that before). At least I have my beautiful wife at my side. At least I have made it long enough to see my first born graduate high school. I just need to get past this mountain I have in front of me.
Wednesday, May 6, 2015
Surgery is planned!
I said this back in May of 2012 and November of 2012 and we are back here again. Surgery is a GO! I have been sitting on pins an needles since yesterday morning, both dreading and excited for a call from New Orleans. Finally, at about 3:00, I got the call and they believe surgery is reasonable to get me eating again. Interestingly, in May of 2012, we went to clinic the day after Memorial day just like we are doing again here is May of 2015.
We will be going to clinic on 5/26 at noon and will be admitted to the hospital after my appointment, preparing for surgery on the 27th. As with prior surgeries, this caries a significant risk of carcinoid crisis but there are few better equipped to handle this reaction that Dr. Boudreaux. I am sure there is a significant chance of losing some bowel because it is so scarred but, when all is said and done, I should be able to eat.
Starting to eat will come slowly because my intestines will not be used to large volumes of food and my stomach most certainly has shrunk some but I will eat normally again! My food dreams will be addressed and I will be able to participate in so many social settings that revolve around food. Right now, I would even look forward to some of the bone-in charcoal ribs that Rob DeLine made for a get together at his house years ago!
Long term plans? Surgery on the 27th means that the first of August is 9 weeks off. That will be my target for returning to normal life (hockey, work, and normal play). Ski season is obviously in no danger and I am looking forward to making up for the season truncation I experienced this year.
Metron graced me with an Amazon gift card and I have over a dozen books to read which will fill up my time. I appreciate all the book recommendations from everyone and certainly have a variety of new reading to do. One (H is for Hawk) was just finished and is a book that I would not have picked up without a recommendation and was a good read.
Monday, May 4, 2015
Food dreams
I had forgotten what it was like back in 2012 when I was on TPN before. I don't recall desiring food so much and it is really wearing on me this year. I can do full liquids fairly well but only in small quantities (1-2 ensure's per day, some jello, pudding, or a shake). I find my stomach filling up with bile many times because the backed up intestinal track just doesn't let anything pass and I don't have a gall bladder to 'dole out' the bile when necessary. This often forces me to vomit several hundred milliliters of the foul liquid, sometimes several times a day and does not lead to a happy Ron.
I think of salty, crunchy food often. Crispy tacos, popcorn, nachos, and chips and salsa. I think about the crunch of the skin of deeply fried chicken like that from Popeye's or KFC. Regular potato chips and french onion dip sounds wonderful and my mouth waters at the thought of the salt from the chips as it merges with the flavors of the dip with that wonderful crunching sound.
Steak. Delicious, grilled, thick pieces of steak. A deeply marbled piece of ribeye, medium rare that melts in your mouth, barely requiring you to chew but the act of chewing is completely rewarding as well. I think of the baked potato beside it, overflowing with butter, sour cream, bacon, chives, and shredded cheddar cheese. Again, salt with a number of mingled, complimentary flavors.
I normally wouldn't put a salad in here but, again, the crunch of the lettuce along with a wonderful bleu cheese, ranch, or basalmic vinegrette. No salad is complete without crunchy, fresh croutons and some shredded cheese. I remember a bleu cheese wedge I had at the Red Fish grill in NOLA about 10 years ago that was absolute stunning and I dream of having that salad again.
French fries. Particularly McDonald's french fries. There is something about the way they taste and crunch in your mouth when they are fresh and hot out of the frier with their light coating of salt. Other food at McDonald's, I can take or leave but their fries are wonderful.
Crab with lots of clarified butter. Cracking open the claws with the large chunks of meat inside and then dipping them in the butter for a little taste of heaven. We don't get it often and it is never fresh here in the middle of the country but it is luscious all the same.
Chipotle. There are two different things I order at Chipotle: A chicken fajita burrito with mild and chili-corn salsa, white rice, cheese, and sour cream. This is perfect when I can't eat it right away and the melding of the flavors is awesome. The sweetness of the corn, mixing with the heat of the chilis along with the slight char on the steak is heavenly. When I eat at Chipotle, I generally get the crispy chicken tacos, again with mild and chili-corn salsa, cheese and lettuce and the crispiness of the shells is always remarkable and the rest of the flavors put me in a bit of a happiness coma.
A ground beef chimichanga, fried with a crispy shell, smothered in green chili, lettuce, and sour cream is another thing I am looking forward to. The heat of the chili is tempered by the coolness of the lettuce and the tang of the sour cream. The meat filling, along with more cheese, grilled onions adds another dimension of flavor that I miss terribly.
So many other foods. Chicken Parmesan, sesame chicken, Stephanie's delicious sweet and sour chicken, Five guys hamburgers, Jack Daniel's fried shrimp at TGI Fridays, Hot wings. The list goes on and on.
I love donuts but they are not high on my list right now. Savory is most of what I crave. I grow tired of the sweet chocolaty flavor of ensure and the sweet sameness of Jello (Jello brand is better than Jolly Rancher brand). I occasionally get some cream of chicken/mushroom soup but, again, the sameness is overwhelming.
Hopefully soon. I hope to find out tomorrow if Dr. Boudreaux believes he can help and we can then plan for the surgery. Soon after that, I will get food. I will get my savory. I will have my flavors. I know it is going to be slow going at the start but I know I will be able to eat and not worry that it is coming back up an hour later. Soon. That is what I keep telling myself.
I think of salty, crunchy food often. Crispy tacos, popcorn, nachos, and chips and salsa. I think about the crunch of the skin of deeply fried chicken like that from Popeye's or KFC. Regular potato chips and french onion dip sounds wonderful and my mouth waters at the thought of the salt from the chips as it merges with the flavors of the dip with that wonderful crunching sound.
Steak. Delicious, grilled, thick pieces of steak. A deeply marbled piece of ribeye, medium rare that melts in your mouth, barely requiring you to chew but the act of chewing is completely rewarding as well. I think of the baked potato beside it, overflowing with butter, sour cream, bacon, chives, and shredded cheddar cheese. Again, salt with a number of mingled, complimentary flavors.
I normally wouldn't put a salad in here but, again, the crunch of the lettuce along with a wonderful bleu cheese, ranch, or basalmic vinegrette. No salad is complete without crunchy, fresh croutons and some shredded cheese. I remember a bleu cheese wedge I had at the Red Fish grill in NOLA about 10 years ago that was absolute stunning and I dream of having that salad again.
French fries. Particularly McDonald's french fries. There is something about the way they taste and crunch in your mouth when they are fresh and hot out of the frier with their light coating of salt. Other food at McDonald's, I can take or leave but their fries are wonderful.
Crab with lots of clarified butter. Cracking open the claws with the large chunks of meat inside and then dipping them in the butter for a little taste of heaven. We don't get it often and it is never fresh here in the middle of the country but it is luscious all the same.
Chipotle. There are two different things I order at Chipotle: A chicken fajita burrito with mild and chili-corn salsa, white rice, cheese, and sour cream. This is perfect when I can't eat it right away and the melding of the flavors is awesome. The sweetness of the corn, mixing with the heat of the chilis along with the slight char on the steak is heavenly. When I eat at Chipotle, I generally get the crispy chicken tacos, again with mild and chili-corn salsa, cheese and lettuce and the crispiness of the shells is always remarkable and the rest of the flavors put me in a bit of a happiness coma.
A ground beef chimichanga, fried with a crispy shell, smothered in green chili, lettuce, and sour cream is another thing I am looking forward to. The heat of the chili is tempered by the coolness of the lettuce and the tang of the sour cream. The meat filling, along with more cheese, grilled onions adds another dimension of flavor that I miss terribly.
So many other foods. Chicken Parmesan, sesame chicken, Stephanie's delicious sweet and sour chicken, Five guys hamburgers, Jack Daniel's fried shrimp at TGI Fridays, Hot wings. The list goes on and on.
I love donuts but they are not high on my list right now. Savory is most of what I crave. I grow tired of the sweet chocolaty flavor of ensure and the sweet sameness of Jello (Jello brand is better than Jolly Rancher brand). I occasionally get some cream of chicken/mushroom soup but, again, the sameness is overwhelming.
Hopefully soon. I hope to find out tomorrow if Dr. Boudreaux believes he can help and we can then plan for the surgery. Soon after that, I will get food. I will get my savory. I will have my flavors. I know it is going to be slow going at the start but I know I will be able to eat and not worry that it is coming back up an hour later. Soon. That is what I keep telling myself.
Wednesday, April 29, 2015
Maybe I was right afterall
6 weeks ago, I suspected a small bowel obstruction when I finally when to the hospital in mid March. I had almost all the symptoms I had previous experienced with two prior small bowel obstructions except for not as severe of cramps as the first time. For a week in the hospital, I was told that that is was probably Ileus, just a 'standard' sleepy or uncoordinated bowel with no real explanation as to why it could happen spontaneously nor any real hope for the future.
We then hooked up with a GI doc who suggested other possible diagnoses and we proceeded to work through them, one at a time, trying to rule out reasons for poor behavior of my digestive tract. At least this was active diagnosing. Putting forward a hypotheses and then using non invasive testing to determine if the hypothesis was correct.
His last test was called a small bowel followthrough test and it is really quite simple. You swallow a barium solution and they take an immediate x-ray to see it in your stomach. They then x-ray at 15 minutes, followed by a series of x-rays at 30 minutes to track the progress of the barium through your digestive tract. Given you start with eating nothing for 8hrs previously, it should make it through your digestive tract in about 1-1.5 hours but I knew ahead of time that I was in this for the long haul.
At 3hrs, they extended it to 1hr intervals and, at 5 hours, they did real-time imaging and had me swallow some more barium to apply some pressure. Finally, at about 7hrs, they sent me home with the barium never reaching the large intestine.
Upon reading the report this morning, I see: "Under real-time fluorosciopic imaging, significant small bowel tethering is noted with basically fixed, variably dialated small bowel loops". In the Opinion section, he continues "1) Significant small bowel obstruction with non traversal of the small bowel, despite greater than 6-hour evaluation...". I did finally pass some barium that night, 10 hours after the initial dosing.
I am fairly certain that what this means is that I WAS RIGHT. 8 weeks ago, I suspected small bowel obstruction. 7 weeks ago, I started warning some of the doctors I see regularly, and 6 weeks ago, I was finally hospitalized. The obstruction must have loosened somewhat in the hospital because I could eat small amounts of food but it quickly clamps down again, causing yet more vomiting.
This makes me incredibly angry. 6 weeks ago, I knew this was what was going on. 6 weeks ago we could have been already starting on the true path to recovery. I could be recovering from surgery right now rather than enduring the continued weight loss and misery.
I don't wish for surgery, I know that it is not all fun and games and am already dreading having an NG tube inserted for days. I know there are grave risks with surgery but I know that a successful surgery leads to a much high quality of life for me. At this point, surgery is probably many weeks off (assuming this report is believed) and we lose much of another summer.
We still need to contact the doctors in New Orleans and have continued to keep them abreast of results up here. They should get these results tomorrow but I know Wednesdays are Dr. Boudreaux's surgery day so he may not do anything for a couple of days yet. So, flights to NOLA are in our near future and, hopefully, rescue from my current situation.
We then hooked up with a GI doc who suggested other possible diagnoses and we proceeded to work through them, one at a time, trying to rule out reasons for poor behavior of my digestive tract. At least this was active diagnosing. Putting forward a hypotheses and then using non invasive testing to determine if the hypothesis was correct.
His last test was called a small bowel followthrough test and it is really quite simple. You swallow a barium solution and they take an immediate x-ray to see it in your stomach. They then x-ray at 15 minutes, followed by a series of x-rays at 30 minutes to track the progress of the barium through your digestive tract. Given you start with eating nothing for 8hrs previously, it should make it through your digestive tract in about 1-1.5 hours but I knew ahead of time that I was in this for the long haul.
At 3hrs, they extended it to 1hr intervals and, at 5 hours, they did real-time imaging and had me swallow some more barium to apply some pressure. Finally, at about 7hrs, they sent me home with the barium never reaching the large intestine.
Upon reading the report this morning, I see: "Under real-time fluorosciopic imaging, significant small bowel tethering is noted with basically fixed, variably dialated small bowel loops". In the Opinion section, he continues "1) Significant small bowel obstruction with non traversal of the small bowel, despite greater than 6-hour evaluation...". I did finally pass some barium that night, 10 hours after the initial dosing.
I am fairly certain that what this means is that I WAS RIGHT. 8 weeks ago, I suspected small bowel obstruction. 7 weeks ago, I started warning some of the doctors I see regularly, and 6 weeks ago, I was finally hospitalized. The obstruction must have loosened somewhat in the hospital because I could eat small amounts of food but it quickly clamps down again, causing yet more vomiting.
This makes me incredibly angry. 6 weeks ago, I knew this was what was going on. 6 weeks ago we could have been already starting on the true path to recovery. I could be recovering from surgery right now rather than enduring the continued weight loss and misery.
I don't wish for surgery, I know that it is not all fun and games and am already dreading having an NG tube inserted for days. I know there are grave risks with surgery but I know that a successful surgery leads to a much high quality of life for me. At this point, surgery is probably many weeks off (assuming this report is believed) and we lose much of another summer.
We still need to contact the doctors in New Orleans and have continued to keep them abreast of results up here. They should get these results tomorrow but I know Wednesdays are Dr. Boudreaux's surgery day so he may not do anything for a couple of days yet. So, flights to NOLA are in our near future and, hopefully, rescue from my current situation.
Friday, April 17, 2015
Back on TPN again
Several things to update since my last blog post but the biggest change is that I am now on TPN once again.
Let's start off with where we were a week ago. We had performed an ultrasound and that had some disturbing results. They saw the celiac artery was cut off by 60-70% and the celiac artery's main function is to feed the stomach and the spleen. They were also unable to image the superior mesenteric artery (SMA) whose primary function is to feed the small intestine and supplement the celiac artery's feeding of the stomach.
At that point, we planned on getting a PICC line, starting TPN and getting a Magnetic Resonance Angiogram (MRA) of the abdominal arteries. The PICC line would allow me to get nutrition through TPN and the MRA would give a much better image of the abdominal arteries, hopefully identifying that SMA and seeing any other restriction. So, I was scheduled for a PICC line on 4/14, TPN on 4/15, and a MRA on 4/17.
Well, around 2 hrs before the PICC line was to be inserted, the nurse that was to perform the procedure let us know that she still did not have approval from all of my doctors. Another hour later, she called again, saying she still could not get ahold of my vascular surgeon and we started talking a bit. The nurse discovered that I was near dialysis and said that they had a cutoff of creatinine above 3 for installing a PICC line so a PICC line was out of the picture and TPN was also going to get put off.
I then spoke with my GI's nurse and she said we would go for a central line which is a more involved procedure. After some effort, she was able to get a central line scheduled for 4/16 at Memorial and we were back online again.
I got the central line installed with a port just beneath the skin on my right chest after a 45 minute procedure with just twilight sedation. I had not expected how much it would hurt afterwards and was very happy that I had lots of percocet from prior procedures to help mute some of the pain.
Finally, on 4/17, the nurse came by and we got the TPN started with a rate of 1200 calories per day to begin. As time goes on, we will hopefully be increasing the calorie count until we get to a much higher level, putting some fat and meat on my bones in addition to nutrition that I get orally.
Now, about that MRA. We had the scan this morning and I just got a copy of the report and it is both good and bad. The gross results is that there are "Widely patent mesenteric arteries". So, this is new terminology to me and, from what I can understand, that means that they saw absolutely no decrease in blood flow in any of the mesenteric arteries on the MRA. If anyone out there knows more, please let me know!
That is good news because it means that I don't need to have surgery to free up blood flow to either my intestines or to the stomach. It is bad news because it means that we still don't know why I have gastroparesis. I seem to tolerate a full liquid diet fairly well but am unable to consume a reasonable amount of full liquids to gain weight. Any solid food that I eat seems to come back up a couple of hours later, even when I am taking Reglan.
So, I am going to stay on full liquids for a little while again and then try re-introducing solids with the help of Reglan. Will it be successful? I have no idea. I do know that I will at least stave off this weight loss with the combination of TPN and full liquids. I just don't want to live the rest of my life without putting my teeth to good use!
Let's start off with where we were a week ago. We had performed an ultrasound and that had some disturbing results. They saw the celiac artery was cut off by 60-70% and the celiac artery's main function is to feed the stomach and the spleen. They were also unable to image the superior mesenteric artery (SMA) whose primary function is to feed the small intestine and supplement the celiac artery's feeding of the stomach.
At that point, we planned on getting a PICC line, starting TPN and getting a Magnetic Resonance Angiogram (MRA) of the abdominal arteries. The PICC line would allow me to get nutrition through TPN and the MRA would give a much better image of the abdominal arteries, hopefully identifying that SMA and seeing any other restriction. So, I was scheduled for a PICC line on 4/14, TPN on 4/15, and a MRA on 4/17.
Well, around 2 hrs before the PICC line was to be inserted, the nurse that was to perform the procedure let us know that she still did not have approval from all of my doctors. Another hour later, she called again, saying she still could not get ahold of my vascular surgeon and we started talking a bit. The nurse discovered that I was near dialysis and said that they had a cutoff of creatinine above 3 for installing a PICC line so a PICC line was out of the picture and TPN was also going to get put off.
I then spoke with my GI's nurse and she said we would go for a central line which is a more involved procedure. After some effort, she was able to get a central line scheduled for 4/16 at Memorial and we were back online again.
I got the central line installed with a port just beneath the skin on my right chest after a 45 minute procedure with just twilight sedation. I had not expected how much it would hurt afterwards and was very happy that I had lots of percocet from prior procedures to help mute some of the pain.
Finally, on 4/17, the nurse came by and we got the TPN started with a rate of 1200 calories per day to begin. As time goes on, we will hopefully be increasing the calorie count until we get to a much higher level, putting some fat and meat on my bones in addition to nutrition that I get orally.
Now, about that MRA. We had the scan this morning and I just got a copy of the report and it is both good and bad. The gross results is that there are "Widely patent mesenteric arteries". So, this is new terminology to me and, from what I can understand, that means that they saw absolutely no decrease in blood flow in any of the mesenteric arteries on the MRA. If anyone out there knows more, please let me know!
That is good news because it means that I don't need to have surgery to free up blood flow to either my intestines or to the stomach. It is bad news because it means that we still don't know why I have gastroparesis. I seem to tolerate a full liquid diet fairly well but am unable to consume a reasonable amount of full liquids to gain weight. Any solid food that I eat seems to come back up a couple of hours later, even when I am taking Reglan.
So, I am going to stay on full liquids for a little while again and then try re-introducing solids with the help of Reglan. Will it be successful? I have no idea. I do know that I will at least stave off this weight loss with the combination of TPN and full liquids. I just don't want to live the rest of my life without putting my teeth to good use!
Friday, April 10, 2015
Progress of a sort
I continue to lose weight but we are making some progress in other ways. I had an abdominal ultrasound of the major arteries of the abdomen yesterday and we have some useful information off of that. They determined that my celiac artery was pinched off by 2/3. The celiac artery feeds the stomach and could lead to a sleepy or paralytic stomach.
They also were unable to locate the superior mesenteric artery which feeds both the stomach and most of the intestines. If this is pinched off, then the stomach will be severely impinged and this would lead to significant problems eating. Also, it would lead to abdominal cramps and a dying off of the intestines. This has happened before but they addressed it in 2012 without losing any of my intestines.
So, we are going to get a MRI Angiogram which will give a definitive 3d picture of the abdominal arteries and let us know exactly what is going on with them. If we have significant pinching off, we can address them in the short term with stents and then can begin investigating surgery to clean off the tumors.
Additionally, we are going to start TPN again. Probably on Monday, we will get a PICC line installed in my right arm again and then I will be hospitalized the next day to start TPN in the hospital before going back home the following day to continue TPN here. TPN will provide me a significant amount of nutrition, stopping my plummeting weight (down to 144 pounds on my 6'3" frame).
It is not a lot but it is a small amount of forward progress.
They also were unable to locate the superior mesenteric artery which feeds both the stomach and most of the intestines. If this is pinched off, then the stomach will be severely impinged and this would lead to significant problems eating. Also, it would lead to abdominal cramps and a dying off of the intestines. This has happened before but they addressed it in 2012 without losing any of my intestines.
So, we are going to get a MRI Angiogram which will give a definitive 3d picture of the abdominal arteries and let us know exactly what is going on with them. If we have significant pinching off, we can address them in the short term with stents and then can begin investigating surgery to clean off the tumors.
Additionally, we are going to start TPN again. Probably on Monday, we will get a PICC line installed in my right arm again and then I will be hospitalized the next day to start TPN in the hospital before going back home the following day to continue TPN here. TPN will provide me a significant amount of nutrition, stopping my plummeting weight (down to 144 pounds on my 6'3" frame).
It is not a lot but it is a small amount of forward progress.
Monday, April 6, 2015
Weak
I hate feeling weak, I hate being weak and I hate appearing to be weak. All of these are true of me right now. Let me catch you up:
On 4/1, I had a gastric emptying exam. For this exam, you eat nothing for 12hrs prior and then eat a small amount of easily digestible food, laced with a radioactive marker (technetium in this case). They then scan you for about 2 hours, watching the food pass from you stomach and into your small intestine. For a normal person, about 50% of the food should have left the stomach within the first 90 minutes but, at 100 minutes, we had to stop the test early because I had to vomit. At that point, 2% (essentially nothing) had passed into my small bowel which gives a fairly confident diagnosis of paralytic stomach.
So, that afternoon, we met with the GI doctor and he started me on Reglan which should help stimulate stomach activity and I started taking it that evening. 4/2 went well and then, on 4/3, I had my regularly scheduled bilateral stent swap. The stent swap was successful but it is getting harder and harder for the urologist to fish that stent up my right ureter, taking almost a full hour this time.
Food did not go well that day nor did it go well on Saturday with my vomiting a large amount of bile and/or stomach acid on Saturday afternoon. Sunday was a good food day with me getting about 1600 calories but today (Monday) has been a down day with my target being about 1300 calories by the time I finish tonight. For someone of my height, I should be eating about 2000 calories on days when I do absolutely nothing and need to be significantly above that to increase my weight and strength.
We are giving the medication until Wednesday and then will contact the GI doc again about either other medication or starting me back up on TPN which I had 2 years ago. At least with TPN, I will be able to regain some strength and calories with both TPN feeding as well as some oral feeding as well.
For now, I am trying to do as little as possible and trying to eat whatever I can, whenever I can tolerate it. Seems odd, being an American, and having trouble eating. This is certainly a diet that I do not, under any circumstances, recommend.
I am keeping somewhat intellectually stimulated, working on my pet personal project of a thread based optimistic simulation engine and actually have made a lot of progress since I left it behind after my recovery in 2013. It has been fun learning new features of C++, Boost, and finding cool ways to make some awesome templates.
I have watched some movies I missed, seen some bad TV and taken a bunch of naps. I would MUCH prefer to be out and about, back to work and play but that is not going to be for a while unless we can solve this food issue.
Thanks for the well wishes and I hope to see all of you soon!
On 4/1, I had a gastric emptying exam. For this exam, you eat nothing for 12hrs prior and then eat a small amount of easily digestible food, laced with a radioactive marker (technetium in this case). They then scan you for about 2 hours, watching the food pass from you stomach and into your small intestine. For a normal person, about 50% of the food should have left the stomach within the first 90 minutes but, at 100 minutes, we had to stop the test early because I had to vomit. At that point, 2% (essentially nothing) had passed into my small bowel which gives a fairly confident diagnosis of paralytic stomach.
So, that afternoon, we met with the GI doctor and he started me on Reglan which should help stimulate stomach activity and I started taking it that evening. 4/2 went well and then, on 4/3, I had my regularly scheduled bilateral stent swap. The stent swap was successful but it is getting harder and harder for the urologist to fish that stent up my right ureter, taking almost a full hour this time.
Food did not go well that day nor did it go well on Saturday with my vomiting a large amount of bile and/or stomach acid on Saturday afternoon. Sunday was a good food day with me getting about 1600 calories but today (Monday) has been a down day with my target being about 1300 calories by the time I finish tonight. For someone of my height, I should be eating about 2000 calories on days when I do absolutely nothing and need to be significantly above that to increase my weight and strength.
We are giving the medication until Wednesday and then will contact the GI doc again about either other medication or starting me back up on TPN which I had 2 years ago. At least with TPN, I will be able to regain some strength and calories with both TPN feeding as well as some oral feeding as well.
For now, I am trying to do as little as possible and trying to eat whatever I can, whenever I can tolerate it. Seems odd, being an American, and having trouble eating. This is certainly a diet that I do not, under any circumstances, recommend.
I am keeping somewhat intellectually stimulated, working on my pet personal project of a thread based optimistic simulation engine and actually have made a lot of progress since I left it behind after my recovery in 2013. It has been fun learning new features of C++, Boost, and finding cool ways to make some awesome templates.
I have watched some movies I missed, seen some bad TV and taken a bunch of naps. I would MUCH prefer to be out and about, back to work and play but that is not going to be for a while unless we can solve this food issue.
Thanks for the well wishes and I hope to see all of you soon!
Thursday, March 19, 2015
Out of the hospital but with many unknowns.
They released me from the hospital today but we return home with questions as to what is causing the problems. I am consuming liquids and solid foods but I am still having difficulty with meals of any reasonable size. My diet is going to be limited to smaller meals with a significant portion of each meal being some sort of full liquid diet.
What we do know at this time is this:
What we do know at this time is this:
- I don't have a mechanical obstruction because when I am on a full liquid diet, I am able to pass food easily and do not have any of the other symptoms that I have been experiencing.
- I don't have a gastric outlet obstruction. We know this because I had an endoscopy on the day I left the hospital and nothing in my stomach or duodenum appears abnormal WRT obstruction potential.
What we still have on the table as possible diagnoses are:
- Ileus. Essentially, some part of my digestive tract going sleepy and not allowing things to pass.
- Gastric paralysis. This is where the stomach has similar symptoms as ileus in that it is somewhat sleepy. The stomach does not properly grind the food that you have put in it and it takes longer than normal to expel that food into the small intestine.
My opinions of these are uncertain. Unless my ileus is throughout the small intestine, right up to the stomach, I should be experiencing severe cramps whenever I am eating. This makes me suspect this diagnosis somewhat.
Gastric paralysis seems to have quite a bit going for it. I experience all the major symptoms of this diagnosis and that makes is a front runner at this point. There are some medications that have been successful at addressing this disorder so that would be something with potential. It also always responds well to a full liquid diet which matches what I was doing the first day in the hospital.
Gastric paralysis also can be either confirmed or ruled out with a relatively simple test. Essentially, I go to the radiologist on an empty stomach. They have me eat some item such as one or two hard boiled eggs and then take an x-ray every 15 minutes (or some other interval) to evaluate the rate at which that food leaves my stomach. This is then compared to expected timeframes for stomach evacuation of this amount of food.
Of course, these are only the current potential diagnoses and I hope that we don't have to look any further than these initial guesses and can move me forward!
Tuesday, March 17, 2015
Don't come to me for medical advice!
Several days ago, I wrote about how my condition had worsened and it got so bad that I needed to head to the hospital on Sunday evening. I had hoped to hold out till Monday after the kids went to school but I hit a wall and could not go any further. I will start this off saying that my self diagnosis was wrong but not completely wrong.
We got to the ER to see a relatively full waiting room and I thought we would be sitting for quite a while but I must have looked quite miserable because, after checking in, we were called back just 5 minutes later. I know they take people in order of criticality but I never imagined that I looked that bad but there didn't appear to be any broken legs or car wrecks waiting to be served.
Stephanie and I got put in a room and immediately started the second of many recitations of my medical history and they put in an IV. I am normally a difficult stick but the tech got my line going on just his second attempt. Shortly thereafter, they started me on IV fluids and ran about 2 liters into me in the span of 3 hours. The doctor also ordered an x-ray, looking for signs of an obstruction but, as with the CT earlier in the week, it came back negative.
This did make a noticeable improvement in my condition but I was still extremely fatigued and spent most of the time with my eyes closed, answering questions when I had to. As the second bag was finishing, the ER doc said they would admit me and we took a ride up to the oncology floor of Penrose Hospital. Again, I kept my eyes closed as we made the trip and it was a bit like a surreal amusement park ride as we started and stopped, waited for doors or people and made sudden turns in a new direction while going up and down various ramps.
I slept the night away and woke Monday morning, feeling enormously better. Of course, that is just getting lots of sleep and actually becoming normally hydrated for a change but it felt better and I actually looked quite a bit better as well. Stephanie returned, feeling a bit refreshed as well and let me know that I did look much better than the previous night's 'death warmed over' appearance.
So, in comes the doctor from my local oncologists' group to chat about what is going on. His theory is that my obstruction is not mechanical as in there is nothing physically blocking the way. What he thinks is going on is Ileus but he actually used air quotes when he gave this diagnosis.
To understand this diagnosis, you need to understand a bit about how your gut works to digest the food that you eat. The bowels work by slowly squeezing food along, extracting nutrients as it passes and adding enzymes to break it down. This is called peristalis and you can think of it a bit like stuffing sausages. The way your hands squeeze the casing (intestines), moves the sausage meat along is similar to how the intestines squeeze the digested food along, advancing towards the rectum.
His theory is that my intestines, after all the surgeries may now tend towards getting confused about how to perform this process and/or may go to sleep, not bothering to move the food along. Once they do this, it is like trying to stuff sausages by only pushing on one end of the casing. It just isn't going to work and is going to behave like an obstruction.
So, we have started a liquid diet and I do have some faint bowel noises and am starting to pass some stool again. Today, they have moved me to a full diet and will continue to monitor me and how I pass the food. I have been taking anti nausea medication which has helped some and it may be a part of my continually expanding list of medications now.
For me, the big concern is the future. Will this happen again? Possibly. Is there anything we can do at this point to prevent it from happening again? Most likely not. What do we do when it happens again? Same deal, hospitalization until I can tolerate food again. Eventually, it may come to a point were my bowels simply never start working again and I may have to go on TPN at that point for the rest of my life.
As to the short term future, I hope to be released from the hospital in the next few days and then will start getting my strength back and returning to work and play. I will update again when I get out and want to say thanks to all the well wishes I have been receiving. Hope to see all of you soon!
We got to the ER to see a relatively full waiting room and I thought we would be sitting for quite a while but I must have looked quite miserable because, after checking in, we were called back just 5 minutes later. I know they take people in order of criticality but I never imagined that I looked that bad but there didn't appear to be any broken legs or car wrecks waiting to be served.
Stephanie and I got put in a room and immediately started the second of many recitations of my medical history and they put in an IV. I am normally a difficult stick but the tech got my line going on just his second attempt. Shortly thereafter, they started me on IV fluids and ran about 2 liters into me in the span of 3 hours. The doctor also ordered an x-ray, looking for signs of an obstruction but, as with the CT earlier in the week, it came back negative.
This did make a noticeable improvement in my condition but I was still extremely fatigued and spent most of the time with my eyes closed, answering questions when I had to. As the second bag was finishing, the ER doc said they would admit me and we took a ride up to the oncology floor of Penrose Hospital. Again, I kept my eyes closed as we made the trip and it was a bit like a surreal amusement park ride as we started and stopped, waited for doors or people and made sudden turns in a new direction while going up and down various ramps.
I slept the night away and woke Monday morning, feeling enormously better. Of course, that is just getting lots of sleep and actually becoming normally hydrated for a change but it felt better and I actually looked quite a bit better as well. Stephanie returned, feeling a bit refreshed as well and let me know that I did look much better than the previous night's 'death warmed over' appearance.
So, in comes the doctor from my local oncologists' group to chat about what is going on. His theory is that my obstruction is not mechanical as in there is nothing physically blocking the way. What he thinks is going on is Ileus but he actually used air quotes when he gave this diagnosis.
To understand this diagnosis, you need to understand a bit about how your gut works to digest the food that you eat. The bowels work by slowly squeezing food along, extracting nutrients as it passes and adding enzymes to break it down. This is called peristalis and you can think of it a bit like stuffing sausages. The way your hands squeeze the casing (intestines), moves the sausage meat along is similar to how the intestines squeeze the digested food along, advancing towards the rectum.
His theory is that my intestines, after all the surgeries may now tend towards getting confused about how to perform this process and/or may go to sleep, not bothering to move the food along. Once they do this, it is like trying to stuff sausages by only pushing on one end of the casing. It just isn't going to work and is going to behave like an obstruction.
So, we have started a liquid diet and I do have some faint bowel noises and am starting to pass some stool again. Today, they have moved me to a full diet and will continue to monitor me and how I pass the food. I have been taking anti nausea medication which has helped some and it may be a part of my continually expanding list of medications now.
For me, the big concern is the future. Will this happen again? Possibly. Is there anything we can do at this point to prevent it from happening again? Most likely not. What do we do when it happens again? Same deal, hospitalization until I can tolerate food again. Eventually, it may come to a point were my bowels simply never start working again and I may have to go on TPN at that point for the rest of my life.
As to the short term future, I hope to be released from the hospital in the next few days and then will start getting my strength back and returning to work and play. I will update again when I get out and want to say thanks to all the well wishes I have been receiving. Hope to see all of you soon!
Saturday, March 14, 2015
How quickly Grossly Stable turns Critical
For months I have been sitting in the world of grossly stable. My kidneys have not changed, my cancer has advanced but not changed, my lungs have not accumulated any more fluid, and my hockey game has not improved.
Last November I went skiing with my two sons, staying at a Keystone hotel where we won two free nights stay. The afternoon of our first day, I got quite sick and then it continued through the next day, preventing me from skiing for 1.5 days. Later that month, I had another instance that felt quite a bit like an intestinal obstruction (extreme stomach cramps, vomiting, lack of appetite, delayed evacuation of stomach contents) but those went away and we forgot about the incident.
Over the next few months, my appetite was somewhat limited and, after many meals, I would belch continually with the taste of stomach acid/bile coming up frequently. Occasionally, this would get to the point of causing me to vomit but it was somewhat infrequent. Towards the end of February, things began to increase in frequency and we began to have suspicions of another bowel obstruction.
Carcinoid Cancer generally does not invade organs but tends to glom onto their outsides and causes mechanical issues as opposed to consuming organs (the liver is an exception here). What it has done to me is attach to veins, arteries, and intestines, interfering with their function. For my intestines, this causes them to bind up and kink, preventing stool from passing.
This tends to reveal itself as extreme abdominal cramps, vomiting, weight loss, lack of appetite, and delayed evacuation of stomach contents. I have been experiencing most of these and they have been coming to a head this second week of March. On Wednesday, I had a CT scan to try get a look at my bowels and determine the extent of the obstruction. Unfortunately, it was negative for an obstruction which is extremely perplexing, given the match of symptoms and prior experience with bowel obstructions.
So, this leaves us in a funny state. I don't know what is causing my symptoms. I don't know when they will alleviate. I don't know what to do at this point. I will have an appointment with a Gastro Interologist next week but don't know if I will make it to that point. I may be going to the ER sooner than I see the GI doc if I am unable to keep any food or water down if only to get some IV fluids
So, I am going to go out on a limb here and make my diagnosis. Of course, I am not a doctor but I think I have a reasonable theory. If nothing else, it will be interesting to find out how wrong or right I am!
What we know: I am unable to keep food down. I have abdominal cramps. I often throw up a large amount of bile (~400ml) in the morning even when going to bed on an empty stomach. I frequently have a significant amount of bile in my stomach. I have a loss of appetite. My CT does not indicate a bowel obstruction.
My current theory is that I have an obstruction in my descending duadenum, just past the point where the bile duct enters the small intestine. An obstruction at this point would cause the bile to back up and would result in the bile refluxing back through the pylorus into the stomach. An obstruction at this point would also prevent me from eating and the inability to digest food would lead to the decreased appetite. A slowly advancing obstruction would match my slow increase in symptoms over the past few months.
Finally, we have the negative CT scan. Here is my theory there. I was scheduled for a a CT one hour after downing the oral contrast. Due to a breakdown in the CT machine, my CT was about 2.5 hours later rather than just one hour later. This time may have been sufficient for the oral contrast to slip past the obstruction, making it appear that there is no obstruction.
Am I right? I have no idea. If I am right, I imagine that the only solution is surgical intervention which means a trip to New Orleans if they are willing to take on the challenge. That would also mean about 8 weeks off of work and may lead to me not skiing on Copper Mountain's closing day for the first time in about 8 years... Some things just need to be sacrificed.
Last November I went skiing with my two sons, staying at a Keystone hotel where we won two free nights stay. The afternoon of our first day, I got quite sick and then it continued through the next day, preventing me from skiing for 1.5 days. Later that month, I had another instance that felt quite a bit like an intestinal obstruction (extreme stomach cramps, vomiting, lack of appetite, delayed evacuation of stomach contents) but those went away and we forgot about the incident.
Over the next few months, my appetite was somewhat limited and, after many meals, I would belch continually with the taste of stomach acid/bile coming up frequently. Occasionally, this would get to the point of causing me to vomit but it was somewhat infrequent. Towards the end of February, things began to increase in frequency and we began to have suspicions of another bowel obstruction.
Carcinoid Cancer generally does not invade organs but tends to glom onto their outsides and causes mechanical issues as opposed to consuming organs (the liver is an exception here). What it has done to me is attach to veins, arteries, and intestines, interfering with their function. For my intestines, this causes them to bind up and kink, preventing stool from passing.
This tends to reveal itself as extreme abdominal cramps, vomiting, weight loss, lack of appetite, and delayed evacuation of stomach contents. I have been experiencing most of these and they have been coming to a head this second week of March. On Wednesday, I had a CT scan to try get a look at my bowels and determine the extent of the obstruction. Unfortunately, it was negative for an obstruction which is extremely perplexing, given the match of symptoms and prior experience with bowel obstructions.
So, this leaves us in a funny state. I don't know what is causing my symptoms. I don't know when they will alleviate. I don't know what to do at this point. I will have an appointment with a Gastro Interologist next week but don't know if I will make it to that point. I may be going to the ER sooner than I see the GI doc if I am unable to keep any food or water down if only to get some IV fluids
So, I am going to go out on a limb here and make my diagnosis. Of course, I am not a doctor but I think I have a reasonable theory. If nothing else, it will be interesting to find out how wrong or right I am!
What we know: I am unable to keep food down. I have abdominal cramps. I often throw up a large amount of bile (~400ml) in the morning even when going to bed on an empty stomach. I frequently have a significant amount of bile in my stomach. I have a loss of appetite. My CT does not indicate a bowel obstruction.
My current theory is that I have an obstruction in my descending duadenum, just past the point where the bile duct enters the small intestine. An obstruction at this point would cause the bile to back up and would result in the bile refluxing back through the pylorus into the stomach. An obstruction at this point would also prevent me from eating and the inability to digest food would lead to the decreased appetite. A slowly advancing obstruction would match my slow increase in symptoms over the past few months.
Finally, we have the negative CT scan. Here is my theory there. I was scheduled for a a CT one hour after downing the oral contrast. Due to a breakdown in the CT machine, my CT was about 2.5 hours later rather than just one hour later. This time may have been sufficient for the oral contrast to slip past the obstruction, making it appear that there is no obstruction.
Am I right? I have no idea. If I am right, I imagine that the only solution is surgical intervention which means a trip to New Orleans if they are willing to take on the challenge. That would also mean about 8 weeks off of work and may lead to me not skiing on Copper Mountain's closing day for the first time in about 8 years... Some things just need to be sacrificed.
Tuesday, January 6, 2015
Grossly stable
2015 started off with a successful stent swap on January 2nd and my every 3 month meeting with my oncologist today. I will have a meeting with the Nephrologist next week and then will see the Vascular Surgeon a month or so after that.
So, where are we now? The title of this post says it all as everything is grossly stable but here are the details:
The tumor in the lower lobe of my right lung hasn't changed much and the pleural eflusion that has been accumulating around the lung seems to have stopped accumulating and has not changed significantly. This means that, at least for now, I don't need to get a permanent tap installed to support continued draining of the fluid as long as I can tolerate the currently decreased capacity.
My kidneys also are grossly stable with my creatinine level sitting between 3.5 and 3.8. This is solidly stage 4 kidney failure but it has not budged in the last 8 months or so and, if anything, has decreased somewhat. My decreased liver failure has caused my current anemia but the injections of aranisp (synthetic EPO) has been maintaining my hemoglobin level at about 11. This is still low for a 'normal' person and is a far cry from the 17 I had 2 years ago but it is sufficient to continue playing hockey and ski.
The result of this is that dialysis continues to be put off and will be for the foreseeable future which is awesome!
Carcinoid syndrome is the one place that is not completely stable. The diarrhea has been increasing, even demonstrating some fat malabsorption at times. We are going to try higher levels of imodium and also add lomotil to the mixture to see if we can bring the diarrhea under control. Similarly, the flushing due to physical exertion has been on the increase, starting to show up when I walk up two flights of stairs at a reasonable pace. We will try adding some additional sub-q sandostatin prior to known periods of exertion to address this.
Bowel obstructions don't seem to be immediately apparent but they also are to be something that shows up without any warning. I have the occasional abdominal cramps and worry every time that it may be an obstruction but, fingers crossed, it has not happened yet.
As I mentioned at the start, I continue to have my bilateral ureteral stents swapped out every 2-3 months and my urologist is getting to know his way around my plumbing. A normal swap takes him about 5 minutes at the most but my swaps have taken as long as an hour to complete. This last one took less than half an hour and had minimal pain afterwards. As long as he is able to continue to swap out my stents, I should remain dialysis free and can avoid the dreaded percutaneous nephrostomy...
You may recall that, for several months this past summer, I had been experiencing regular fevers of 101 to 102 every evening. We tried several things to address this, even seeing an infectious disease specialist but could find no cause. Well, my third stent swap of 2014 seems to have cleared this up which seems to imply that it was some sort of persistent urinary tract infection that got removed with the stent swap.
My energy level has improved quite a bit and the walk into work is not as oppressive as it was at the end of the summer. Similarly, my continued chills seem to be lessened which could be a combination of many of the above.
Where do we sit now? Well I am more optimistic than I was 6 months ago. The repeated hits of lungs, kidneys, fevers, ... all had me thinking much more about my mortality but this has been pushed further into the back of my mind. The sword of Damocles is still suspended above my head but the hair suspending it seems to have been reinforced. I only have 6 ski days so far this year but 20 seems to be in reach. I still suck as a hockey goalie (I give sieves a bad name) but I can get out there once a week for fun.
Tumors will continue to grow, new metastases will appear and other violations of my body will occur. Grossly stable is a great place to be for now.
So, where are we now? The title of this post says it all as everything is grossly stable but here are the details:
The tumor in the lower lobe of my right lung hasn't changed much and the pleural eflusion that has been accumulating around the lung seems to have stopped accumulating and has not changed significantly. This means that, at least for now, I don't need to get a permanent tap installed to support continued draining of the fluid as long as I can tolerate the currently decreased capacity.
My kidneys also are grossly stable with my creatinine level sitting between 3.5 and 3.8. This is solidly stage 4 kidney failure but it has not budged in the last 8 months or so and, if anything, has decreased somewhat. My decreased liver failure has caused my current anemia but the injections of aranisp (synthetic EPO) has been maintaining my hemoglobin level at about 11. This is still low for a 'normal' person and is a far cry from the 17 I had 2 years ago but it is sufficient to continue playing hockey and ski.
The result of this is that dialysis continues to be put off and will be for the foreseeable future which is awesome!
Carcinoid syndrome is the one place that is not completely stable. The diarrhea has been increasing, even demonstrating some fat malabsorption at times. We are going to try higher levels of imodium and also add lomotil to the mixture to see if we can bring the diarrhea under control. Similarly, the flushing due to physical exertion has been on the increase, starting to show up when I walk up two flights of stairs at a reasonable pace. We will try adding some additional sub-q sandostatin prior to known periods of exertion to address this.
Bowel obstructions don't seem to be immediately apparent but they also are to be something that shows up without any warning. I have the occasional abdominal cramps and worry every time that it may be an obstruction but, fingers crossed, it has not happened yet.
As I mentioned at the start, I continue to have my bilateral ureteral stents swapped out every 2-3 months and my urologist is getting to know his way around my plumbing. A normal swap takes him about 5 minutes at the most but my swaps have taken as long as an hour to complete. This last one took less than half an hour and had minimal pain afterwards. As long as he is able to continue to swap out my stents, I should remain dialysis free and can avoid the dreaded percutaneous nephrostomy...
You may recall that, for several months this past summer, I had been experiencing regular fevers of 101 to 102 every evening. We tried several things to address this, even seeing an infectious disease specialist but could find no cause. Well, my third stent swap of 2014 seems to have cleared this up which seems to imply that it was some sort of persistent urinary tract infection that got removed with the stent swap.
My energy level has improved quite a bit and the walk into work is not as oppressive as it was at the end of the summer. Similarly, my continued chills seem to be lessened which could be a combination of many of the above.
Where do we sit now? Well I am more optimistic than I was 6 months ago. The repeated hits of lungs, kidneys, fevers, ... all had me thinking much more about my mortality but this has been pushed further into the back of my mind. The sword of Damocles is still suspended above my head but the hair suspending it seems to have been reinforced. I only have 6 ski days so far this year but 20 seems to be in reach. I still suck as a hockey goalie (I give sieves a bad name) but I can get out there once a week for fun.
Tumors will continue to grow, new metastases will appear and other violations of my body will occur. Grossly stable is a great place to be for now.
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