5/30. Wednesday. Pre-op on Tuesday. Fly out on Monday. Man. Of course, all of this is dependent upon the nano-knife being available and we will be touching base during the week of the 14th to make sure that we can move forward.
Surgery scares me this time. I have had three other laparotomies and understand the basic concept and the recovery but this one makes me more uncomfortable. My first surgery was 2hrs, the second was 3, the third was about 5 and this next one will probably be as long as all of those put together and then some.
The doctors put their patients in the ICU for the first two days after surgery, probably because they want to have additional monitoring. After that, I move to the more pleasant rooms at the hospital but probably with one or more drains to handle the results of the surgery. The surgeons use internal sutures that will dissolve and then use glue to connect the external tissue which is nice because they won't need to take out staples.
I stress over the idea of getting a colostomy. I know that many people are able to continue relatively active lives with a a colostomy and there a number of options such as a colostomy with irrigation which may make general life a bit nicer in some respects but... Ugh.
The rest of recovery should be mostly normal. I will spend another 5 days or so in the hospital after I leave the ICU, waiting for my bowels to wake up. I will spend a couple of days walking the halls with a number of tubes attached and I hope that I will be able to get rid of the TPN bag soon after I move out of the ICU!
Then I will get to come home. The nurses suggest another 12 weeks for recovery at home. That is longer than I have ever spent for recovery but they suggest planning for 12 and being excited when it is less.
Of course, I need this. Surgery is unquestioned now and we don't have a real choice. Sometimes I just wish I had good choices. Sorry for the downer.
Wednesday, April 25, 2012
Saturday, April 21, 2012
First week at home
Well, we have been home for a week now and things are starting to return to a minor sense of normal. I am still quite weak with a short 3/4 mile walk making me tired but I am starting to add some food by mouth! I am getting more used to having an IV connected to me continually for the TPN but it still feels quite odd much of the time. Stephanie was able to find a Camelbak pack to carry my TPN around and it is much more convenient than the bag that was provided for free.
I am adding Juven for my 'breakfast' to help give my bowel something to do. I then mix up 32oz of Gatorade that I have for lunch and dinner. This gives me about 2000 calories per day right now which is getting closer to the target of 2400 calories. I have added a bottle of Ensure for 'lunch' and it appears to be processing through my system. Adding the Ensure puts me at about 2250 calories (2350 for the Plus version) which, given my relatively sedentary state, should result in some weight gain.
The worst thing right now is dealing with the continual thoughts of food. I have cravings for a bit of everything but mostly salty foods right now. Things I think of:
Speaking of surgery, I spoke with the nurses at the Neuro Endocrine clinic in New Orleans to get a status on the Nano knife. Surgery is dependent on getting access to the Nanoknife and the company representatives say that the FDA approval may not be until the middle or end of May now.
Certainly surgery could be performed without the Nanoknife. This has been done for years but it has the increased likelihood of complications and these are some areas where we really want to avoid complications. There is no problem with obtaining the use of the neoprobe for guiding the surgeon's scalpel, we just need to wait on the Nanoknife.
So, given that surgery is now further off than originally expected, we will have to choose a day for surgery and then hope that the technology is available at that time, postponing surgery if it is not available. I am also exploring the possibility of returning to work part time while we wait for my surgery, maintaining my short term disability status. This will help me feel a bit more part of the world for a while as well as exercise my mind a bit more.
On a positive note, having a computer orders of magnitude faster with almost 1000 times more memory, I was able to disprove something I postulated 18 years ago during my doctoral work!
I am adding Juven for my 'breakfast' to help give my bowel something to do. I then mix up 32oz of Gatorade that I have for lunch and dinner. This gives me about 2000 calories per day right now which is getting closer to the target of 2400 calories. I have added a bottle of Ensure for 'lunch' and it appears to be processing through my system. Adding the Ensure puts me at about 2250 calories (2350 for the Plus version) which, given my relatively sedentary state, should result in some weight gain.
The worst thing right now is dealing with the continual thoughts of food. I have cravings for a bit of everything but mostly salty foods right now. Things I think of:
- Popeye's fried chicken with spicy mashed potatoes and gravy
- McDonald's french fries
- A medium rare grilled ribeye steak with twice baked potatoes
- Chili's chips and salsa (their chips are some of the lightest and crispiest I have found)
- Tacos with my wife's taco meat seasoning
- Chipotle chicken fajita burrito or crispy chicken tacos
- Nachos supreme (no beans of course)
- Popcorn
- Smartfood
- Five Guy's cheeseburger with grilled onions
- Grilled Pork New Orleans (wife's cooking again)
- BeauJo's mountain pies
- My wife's biscuits
Speaking of surgery, I spoke with the nurses at the Neuro Endocrine clinic in New Orleans to get a status on the Nano knife. Surgery is dependent on getting access to the Nanoknife and the company representatives say that the FDA approval may not be until the middle or end of May now.
Certainly surgery could be performed without the Nanoknife. This has been done for years but it has the increased likelihood of complications and these are some areas where we really want to avoid complications. There is no problem with obtaining the use of the neoprobe for guiding the surgeon's scalpel, we just need to wait on the Nanoknife.
So, given that surgery is now further off than originally expected, we will have to choose a day for surgery and then hope that the technology is available at that time, postponing surgery if it is not available. I am also exploring the possibility of returning to work part time while we wait for my surgery, maintaining my short term disability status. This will help me feel a bit more part of the world for a while as well as exercise my mind a bit more.
On a positive note, having a computer orders of magnitude faster with almost 1000 times more memory, I was able to disprove something I postulated 18 years ago during my doctoral work!
Saturday, April 14, 2012
Back home again!
Well, we did not want to jinx it by letting people know what our plans are so very few people knew that we got to check out of the hospital on 4/13 and we returned home this morning!!! It was wonderful seeing the mountains again as our plane flew into Colorado Springs but it is startling how brown things are here after the intense green of New Orleans.
So, here are the details. I did not get the GJ tube installed and have come home on just the TPN for now. We are letting the obstruction release a bit right now with nothing by mouth until Monday morning. At that point, I will begin supplementing the TPN with gatorade or other sports drinks to get more water along with significant additional calories.
Speaking of calories, I have some serious bulking up to do. I have always been relatively thin and, one year ago, I weighed in at about 205. When I started cycling seriously again last summer, that quickly dropped to about 195 and I have stayed there until early February. Well, I just stepped on the scale and I am down to 175. Obviously, if I were trying to diet, I would be ecstatic but losing 10% of your body weight unintentionally is not something that you want to do too often.
My surgery is still not scheduled but it is somewhat understandable. Stephanie went to the Dr's main office on Friday to fill out as much paperwork as possible and they showed her my chart. It currently consists of one folder with my name handwritten on it and one sheet of paper. All the material that they need is currently at the hospital and I anticipate that it should be transferred early next week. As part of my discharge paperwork, I was instructed to contact the office to schedule a surgery in the middle of May.
Speaking of surgery, I have one job over the next few weeks and that is to regain some strength. I was quite shocked this morning when we were walking through the New Orleans airport at how quickly I became tired and how exhausting short walks were. In order to speed my recovery after the surgery, I need to be as strong and healthy as possible when I roll into that operating room.
So, next week, we start with clear liquids for the first couple of days to see if I can tolerate that. If so, then I will step it up and start adding in some simple full liquids like Ensure. The TPN only gives me about 1700 calories (also, amino acids for protein, vitamins, and electrolites) and we would ideally like to consume in excess of 2400 calories per day.
If nothing else, just being home and out of a hospital is wonderful. I loved riding in a car, breathing outdoor air and sleeping in a non hospital bed. Here's to a couple of good weeks of weight gain!
So, here are the details. I did not get the GJ tube installed and have come home on just the TPN for now. We are letting the obstruction release a bit right now with nothing by mouth until Monday morning. At that point, I will begin supplementing the TPN with gatorade or other sports drinks to get more water along with significant additional calories.
Speaking of calories, I have some serious bulking up to do. I have always been relatively thin and, one year ago, I weighed in at about 205. When I started cycling seriously again last summer, that quickly dropped to about 195 and I have stayed there until early February. Well, I just stepped on the scale and I am down to 175. Obviously, if I were trying to diet, I would be ecstatic but losing 10% of your body weight unintentionally is not something that you want to do too often.
My surgery is still not scheduled but it is somewhat understandable. Stephanie went to the Dr's main office on Friday to fill out as much paperwork as possible and they showed her my chart. It currently consists of one folder with my name handwritten on it and one sheet of paper. All the material that they need is currently at the hospital and I anticipate that it should be transferred early next week. As part of my discharge paperwork, I was instructed to contact the office to schedule a surgery in the middle of May.
Speaking of surgery, I have one job over the next few weeks and that is to regain some strength. I was quite shocked this morning when we were walking through the New Orleans airport at how quickly I became tired and how exhausting short walks were. In order to speed my recovery after the surgery, I need to be as strong and healthy as possible when I roll into that operating room.
So, next week, we start with clear liquids for the first couple of days to see if I can tolerate that. If so, then I will step it up and start adding in some simple full liquids like Ensure. The TPN only gives me about 1700 calories (also, amino acids for protein, vitamins, and electrolites) and we would ideally like to consume in excess of 2400 calories per day.
If nothing else, just being home and out of a hospital is wonderful. I loved riding in a car, breathing outdoor air and sleeping in a non hospital bed. Here's to a couple of good weeks of weight gain!
Thursday, April 12, 2012
Did I say the plans were firming up???
They are and they aren't. We do know I am going to have surgery down here and it is looking more and more likely that it will be Dr. Wang performing the surgery. The bad news is that it may not be until the middle of May and there are two reasons for this.
The first reason is that Dr. Wang's schedule simply does not support it right now as he has several conferences at which he is an invited presenter and needs to attend. The second reason is that the FDA is doing a bit of re-evaluation of the the nano knife technology. Nano knife has been used in well over a thousand cases since 2009 but it was somewhat rushed through the FDA approval process because of its similar characteristics to other tissue ablation processes. Dr. Wang believes that this will be completed by the end of April.
From what I have been able to read, it looks like they got approval to use the nano knife device for general surgical ablation of tissue. Their advertisements then seem to sell the technology for treating specific situations which is an error on their part since these capabilities have not been demonstrated in FDA approved tests. Basically, they are claiming something that the FDA does not believe has been proven. There may be a more recent FDA issue with the nano knife but I have not been able to find it.
That said, Dr. Wang seems to be very happy with the performance he is getting out of the nano knife. From what I can understand of the technology and physics, it makes sense that it would perform the way that they are describing.
There is a cool video on the use of nano knife and how it functions. Ablation techniques kill off cells with one of a number of forces, typically heat (Radio Frequency Ablation) or cold (Cryo ablation). The problem you run into with the other techniques is damage to adjoining tissue is ill-defined. This means that RFA cannot be used close to important tissues such as veins, arteries, or ureters and my situation involves at least two of those situations.
Without the nano knife, the surgeons would need to use old fashioned scalpels to remove the tumor and that also is fraught with potential error. Nano knife would give a higher likelihood of better margins without destroying the adjoining tissue. Obviously, this would reduce the likelihood of death, temporary colostomy, or permanent colostomy which is a good thing!
So. What do we do now. I have been on a full liquids diet but started cramping up yesterday so we limited my full liquids somewhat but without any success as I threw up lunch today. Food by mouth was intended as a supplement to the TPN that I have been receiving but TPN has issues. Basically, it is just sugar water with amino acids and electrolites and it is going in through a PICC line (essentially, a super duper IV). This means that TPN is relatively expensive, caries some risk (infection and PICC line maintenance), and can lead to pre-diabetic conditions.
What Dr. Wang is proposing as an alternative is a Gastric-Jejunostomy tube be installed. This will allow insertion of predigested food directly into my small intestine and will allow me to vent any gas that builds up in my stomach. This would be done in two steps. First, a Gastric tube would be installed and, a couple of days later, this would be upgraded to a GJ tube.
This would allow me to 'feed' myself at night and then close it off during the day time. Since the food is predigested, it should not back up in my small intestine and would give me the ability to live a bit more freely. There are fewer side affects to a GJ tube as well so that is a positive result.
So, now we need to decide. GJ tube or TPN. We are leaning towards the G tube installation on 4/13 with the GJ upgrade on 4/16 and then returning home to wait for the surgery with both the nano knife and the neoprobe. The combination of those technologies should lead to the best possible outcome for me. Dr. Wang performs his long surgeries on Wednesdays and Thursdays and my birthday is on a Thursday in May. Finally getting my surgery would be a very nice birthday present!
The first reason is that Dr. Wang's schedule simply does not support it right now as he has several conferences at which he is an invited presenter and needs to attend. The second reason is that the FDA is doing a bit of re-evaluation of the the nano knife technology. Nano knife has been used in well over a thousand cases since 2009 but it was somewhat rushed through the FDA approval process because of its similar characteristics to other tissue ablation processes. Dr. Wang believes that this will be completed by the end of April.
From what I have been able to read, it looks like they got approval to use the nano knife device for general surgical ablation of tissue. Their advertisements then seem to sell the technology for treating specific situations which is an error on their part since these capabilities have not been demonstrated in FDA approved tests. Basically, they are claiming something that the FDA does not believe has been proven. There may be a more recent FDA issue with the nano knife but I have not been able to find it.
That said, Dr. Wang seems to be very happy with the performance he is getting out of the nano knife. From what I can understand of the technology and physics, it makes sense that it would perform the way that they are describing.
There is a cool video on the use of nano knife and how it functions. Ablation techniques kill off cells with one of a number of forces, typically heat (Radio Frequency Ablation) or cold (Cryo ablation). The problem you run into with the other techniques is damage to adjoining tissue is ill-defined. This means that RFA cannot be used close to important tissues such as veins, arteries, or ureters and my situation involves at least two of those situations.
Without the nano knife, the surgeons would need to use old fashioned scalpels to remove the tumor and that also is fraught with potential error. Nano knife would give a higher likelihood of better margins without destroying the adjoining tissue. Obviously, this would reduce the likelihood of death, temporary colostomy, or permanent colostomy which is a good thing!
So. What do we do now. I have been on a full liquids diet but started cramping up yesterday so we limited my full liquids somewhat but without any success as I threw up lunch today. Food by mouth was intended as a supplement to the TPN that I have been receiving but TPN has issues. Basically, it is just sugar water with amino acids and electrolites and it is going in through a PICC line (essentially, a super duper IV). This means that TPN is relatively expensive, caries some risk (infection and PICC line maintenance), and can lead to pre-diabetic conditions.
What Dr. Wang is proposing as an alternative is a Gastric-Jejunostomy tube be installed. This will allow insertion of predigested food directly into my small intestine and will allow me to vent any gas that builds up in my stomach. This would be done in two steps. First, a Gastric tube would be installed and, a couple of days later, this would be upgraded to a GJ tube.
This would allow me to 'feed' myself at night and then close it off during the day time. Since the food is predigested, it should not back up in my small intestine and would give me the ability to live a bit more freely. There are fewer side affects to a GJ tube as well so that is a positive result.
So, now we need to decide. GJ tube or TPN. We are leaning towards the G tube installation on 4/13 with the GJ upgrade on 4/16 and then returning home to wait for the surgery with both the nano knife and the neoprobe. The combination of those technologies should lead to the best possible outcome for me. Dr. Wang performs his long surgeries on Wednesdays and Thursdays and my birthday is on a Thursday in May. Finally getting my surgery would be a very nice birthday present!
Tuesday, April 10, 2012
Plans becoming more firm again
We have been in Louisiana for about 24hrs now and things are becoming a bit more firm. We spoke with Dr. Boudreaux at the emergency room last night for a few minutes along with Dr. Rau who is a surgical resident, working with the carcinoid group. Dr. Boudreaux scheduled yet another CT scan (that is three in about three weeks) which I did last night.
Late this morning, we spoke with Dr. Boudreaux again but for about 30 minutes this time. He had Dr. Rau in tow along with a couple of (third year?) med students and we got a lot of more definitive information. Nothing completely solid but it is solidifying. At work, we often talk about a software freeze where no changes are allowed. This is sort of a software slushy.
The CT shows that I do have significant tumors in the messentary and in the pelvis. The tumors are starting to impinge on the main artery that leads to the messentary and the decreased blood flow certainly is not helping with the health of my intestines. Dr. Boudreaux and Dr. Rau seem to believe that my recent (prior to the more critical obstruction) bowel behavior is more likely obstructive in nature rather than decreased blood flow in nature.
What this all leads to is that he believes surgery is an option and is necessary at this point. The intent is that I will receive an octreoscan on Thursday the 12th. This is a standard scan for carcinoid patients and gives a picture of where the tumors are based on their affinity for octreotide. I have had a couple of these in the past and I did show up on the scans which is a good thing.
This scan will give a better picture of what is tumor and what is scar tissue. Furthermore, it can be used during surgery to actually guide the surgeon's scalpel to find the tumors amidst the good and scar tissue. This is done using what is called a neoprobe. Neoprobes are, essentially, mini geiger counters that can be used to identify tumor from other. They do need to wait a week after the original injection to perform the surgery (needed to let the body excrete the excess octreotide) which gives us a potential surgery date of 4/19.
This is going to be a VERY long surgery, perhaps as long as 15hrs to perform. In the end, I should be as tumor free as is possible from surgery, leaving behind only the liver tumors or tumors too small to be identified by the neoprobe.
Of course, there are downsides. The length of the surgery and the amount of bowel/rectum that may be resected leads to a higher chance of complications. These include
So, things are looking up at this point. Dr. Wang may do the surgery rather than Dr. Boudreaux but they are both patient, methodical surgeons which is exactly what is required. We may also get out of the hospital for a time between now and the surgery but that remains to be seen at this point. I will continue to update this blog but my wife is updating her caring bridge site as well with less of the cold analytical side I am accused of having.
Thoughts and emails are always appreciated as well as contributions to my iPad beowulf cluster!
Late this morning, we spoke with Dr. Boudreaux again but for about 30 minutes this time. He had Dr. Rau in tow along with a couple of (third year?) med students and we got a lot of more definitive information. Nothing completely solid but it is solidifying. At work, we often talk about a software freeze where no changes are allowed. This is sort of a software slushy.
The CT shows that I do have significant tumors in the messentary and in the pelvis. The tumors are starting to impinge on the main artery that leads to the messentary and the decreased blood flow certainly is not helping with the health of my intestines. Dr. Boudreaux and Dr. Rau seem to believe that my recent (prior to the more critical obstruction) bowel behavior is more likely obstructive in nature rather than decreased blood flow in nature.
What this all leads to is that he believes surgery is an option and is necessary at this point. The intent is that I will receive an octreoscan on Thursday the 12th. This is a standard scan for carcinoid patients and gives a picture of where the tumors are based on their affinity for octreotide. I have had a couple of these in the past and I did show up on the scans which is a good thing.
This scan will give a better picture of what is tumor and what is scar tissue. Furthermore, it can be used during surgery to actually guide the surgeon's scalpel to find the tumors amidst the good and scar tissue. This is done using what is called a neoprobe. Neoprobes are, essentially, mini geiger counters that can be used to identify tumor from other. They do need to wait a week after the original injection to perform the surgery (needed to let the body excrete the excess octreotide) which gives us a potential surgery date of 4/19.
This is going to be a VERY long surgery, perhaps as long as 15hrs to perform. In the end, I should be as tumor free as is possible from surgery, leaving behind only the liver tumors or tumors too small to be identified by the neoprobe.
Of course, there are downsides. The length of the surgery and the amount of bowel/rectum that may be resected leads to a higher chance of complications. These include
- Death. Of course, this is a possible complication of any surgery
- Abdominal infection. This would certainly prolong my hospital stay and could lead to further rounds of surgery
- Temporary colostomy. This would be required if the rectum required time to heal or if other work required that there be a bypass. Not something I would like and it would require another surgery to remove the temporary bypass.
- Permanent colostomy. Another bad outcome but people can still be active with colostomy bags although I don't want to think of taking an 80mph slapshot in a colostomy bag...
So, things are looking up at this point. Dr. Wang may do the surgery rather than Dr. Boudreaux but they are both patient, methodical surgeons which is exactly what is required. We may also get out of the hospital for a time between now and the surgery but that remains to be seen at this point. I will continue to update this blog but my wife is updating her caring bridge site as well with less of the cold analytical side I am accused of having.
Thoughts and emails are always appreciated as well as contributions to my iPad beowulf cluster!
Friday, April 6, 2012
Ch ch ch Changes
Maybe I should just stop posting. After finding out this morning that the Dr's office in New Orleans was closed for Good Friday, my local oncologist called the insider number and spoke with Dr. Boudreaux at the office. Dr Boudreaux recommended getting down to LA on Monday, 4/9 so off we go!
Found relatively decent airfare, given the two days notice and have RT flights for both Stephanie and I, departing Monday morning and returning on the 28th (hoped return date). Flights are just $500/pp which struck me as quite cheap, all things considered... Have a hotel room at the Hilton Garden Inn which has a special rate with the hospital and have reserved a rental car.
One significant downturn lately is that the obstruction does not seem to have completely opened back up. This means that I am, once again, not going to be eating and will be getting all of my nutrition by IV. I did talk to the nurse and I may be able to go home tomorrow with the IV food in tow and spend at least some time at home before we take off on our trip. As long as I can avoid the NG tube, I will be much happier!
So, Monday at about 5:00, I will pop into the ER and will be admitted in short order and will be able to start making some progress towards hacking back some of this cancer. What is my ideal schedule now? Whatever gets me home the soonest.
Found relatively decent airfare, given the two days notice and have RT flights for both Stephanie and I, departing Monday morning and returning on the 28th (hoped return date). Flights are just $500/pp which struck me as quite cheap, all things considered... Have a hotel room at the Hilton Garden Inn which has a special rate with the hospital and have reserved a rental car.
One significant downturn lately is that the obstruction does not seem to have completely opened back up. This means that I am, once again, not going to be eating and will be getting all of my nutrition by IV. I did talk to the nurse and I may be able to go home tomorrow with the IV food in tow and spend at least some time at home before we take off on our trip. As long as I can avoid the NG tube, I will be much happier!
So, Monday at about 5:00, I will pop into the ER and will be admitted in short order and will be able to start making some progress towards hacking back some of this cancer. What is my ideal schedule now? Whatever gets me home the soonest.
Plans change
Every time I think I know what the path forward is, it always seems to change.
The last 1.5 months or so, I have been having continued vomiting, alternating with a loss of appetite which was followed by diarrhea. The symptoms seemed to reflect my original diagnosis 10 years ago of a bowel obstruction but, when I had written my last blog entry, the symptoms had disappeared for about 1.5 weeks. Well, that all changed again on Monday, 4/2.
Once again, I got severe stomach cramps and knew I had the same symptoms again so my wife took me to the ER to see if we could uncover the cause. After a short (1hr) wait in the waiting room, we got back to talk to the doctor. He also suspected a small bowel obstruction and gave me 800cc's of a contrast to drink an hour before another CT scan.
Normal CT scans also include IV contrast but my right kidney's function is somewhat diminished so we avoided the IV contrast and went with a standard oral contrast. In spite of the lack of IV contrast, a very bloated small intestine seen right before the point where I had a mass of mescenteric tumors. This was the classic indication of a partial small bowel blockage.
What I had 10 years ago was a complete blockage while this is a partial blockage. Think of your garden hose that has been bent around a corner with a small kink in the line. As long as the pressure is low, the water still flows. As you increase the pressure, the kink becomes more pronounced until it finally shuts down any passage of water and this is what was happening to me.
So, the nurse inserts a Nasogastric (NG) tube up my nose and down into my stomach to begin sucking out as much as is possible on the front side of the blockage. Immediately, almost 600cc of the contrast that I had swallowed came up and I the pressure began to be reduced on the obstruction. I was then transferred to Penrose St. Francis where most of my doctors work.
NG tubes are no fun. They hurt going in and, once they are in, they continue to hurt both your nose and the back of your throat. It made it difficult to talk, sneeze, cough, or even dry swallow. They give you a cloraceptic type spray to try to numb some of the throat but it does not do much at all.
Finally, on 4/4, I began to pass some gas which is an indication that the bowels are beginning to free up and I got the hateful NG tube removed. On 4/5, I got my first clear liquids for lunch, followed by full liquids for dinner. Hopefully I get released on 4/6 to go home.
Our plans are quite involved at this point but still up in the air. On 4/9 (the office is closed on Good Friday), I will be contacting the leading carcinoid surgical group in the country who operate just outside of New Orleans. In a perfect world, I would check into their offices on 4/16 and then will have surgery sometime that week. These docs are the absolute best when it comes to carcinoid as it is almost all they do.
They have all the latest goodies such as radio guided surgery (using radiation to identify the tumors while I am open), have all the latest diagnostic tools, and know exactly how carcinoid behaves. Other than the week after my first diagnosis, this will be the first time that my knowledge of this cancer will be exceeded by the surgeons that will be operating on me.
I imagine I will end up spending about 2-3 weeks in New Orleans and my wife is already looking forward to the beignets that she will be consuming. I have never had one but my love of donuts will certainly transfer!
Once we return home, there will be the surgery+6weeks of recovery until I return to work. Hopefully I will have significant reduction in my total tumor volume and we can then return to waiting for the PRRT treatment which is just undergoing approval in the United States.
Any suggestions of things to do in New Orleans are appreciated although I don't think we want to go to the Sean Payton hall of shame...
The last 1.5 months or so, I have been having continued vomiting, alternating with a loss of appetite which was followed by diarrhea. The symptoms seemed to reflect my original diagnosis 10 years ago of a bowel obstruction but, when I had written my last blog entry, the symptoms had disappeared for about 1.5 weeks. Well, that all changed again on Monday, 4/2.
Once again, I got severe stomach cramps and knew I had the same symptoms again so my wife took me to the ER to see if we could uncover the cause. After a short (1hr) wait in the waiting room, we got back to talk to the doctor. He also suspected a small bowel obstruction and gave me 800cc's of a contrast to drink an hour before another CT scan.
Normal CT scans also include IV contrast but my right kidney's function is somewhat diminished so we avoided the IV contrast and went with a standard oral contrast. In spite of the lack of IV contrast, a very bloated small intestine seen right before the point where I had a mass of mescenteric tumors. This was the classic indication of a partial small bowel blockage.
What I had 10 years ago was a complete blockage while this is a partial blockage. Think of your garden hose that has been bent around a corner with a small kink in the line. As long as the pressure is low, the water still flows. As you increase the pressure, the kink becomes more pronounced until it finally shuts down any passage of water and this is what was happening to me.
So, the nurse inserts a Nasogastric (NG) tube up my nose and down into my stomach to begin sucking out as much as is possible on the front side of the blockage. Immediately, almost 600cc of the contrast that I had swallowed came up and I the pressure began to be reduced on the obstruction. I was then transferred to Penrose St. Francis where most of my doctors work.
NG tubes are no fun. They hurt going in and, once they are in, they continue to hurt both your nose and the back of your throat. It made it difficult to talk, sneeze, cough, or even dry swallow. They give you a cloraceptic type spray to try to numb some of the throat but it does not do much at all.
Finally, on 4/4, I began to pass some gas which is an indication that the bowels are beginning to free up and I got the hateful NG tube removed. On 4/5, I got my first clear liquids for lunch, followed by full liquids for dinner. Hopefully I get released on 4/6 to go home.
Our plans are quite involved at this point but still up in the air. On 4/9 (the office is closed on Good Friday), I will be contacting the leading carcinoid surgical group in the country who operate just outside of New Orleans. In a perfect world, I would check into their offices on 4/16 and then will have surgery sometime that week. These docs are the absolute best when it comes to carcinoid as it is almost all they do.
They have all the latest goodies such as radio guided surgery (using radiation to identify the tumors while I am open), have all the latest diagnostic tools, and know exactly how carcinoid behaves. Other than the week after my first diagnosis, this will be the first time that my knowledge of this cancer will be exceeded by the surgeons that will be operating on me.
I imagine I will end up spending about 2-3 weeks in New Orleans and my wife is already looking forward to the beignets that she will be consuming. I have never had one but my love of donuts will certainly transfer!
Once we return home, there will be the surgery+6weeks of recovery until I return to work. Hopefully I will have significant reduction in my total tumor volume and we can then return to waiting for the PRRT treatment which is just undergoing approval in the United States.
Any suggestions of things to do in New Orleans are appreciated although I don't think we want to go to the Sean Payton hall of shame...
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