Has it really been over a month since I last posted? Wow! Time really flies at home, especially compared to hospital time.
Let me catch you up with what has been going on since we came home from New Orleans:
My parents and kids flew out just an hour or so ahead of us and, upon arrival in Denver, my Dad went and got the car so that we could have a quick drive home. We collected our luggage and came home to our house in Colorado Springs and got to sleep in our bed for the first time in several weeks. You never really know how much you appreciate your own bed and pillow until you spend several weeks in a hospital bed with hospital pillows!
It was wonderful seeing our dog Adi and she was sure excited to see us! The house was as we left it and all the people watching the kids were able to keep it from burning down or being destroyed in some other fashion. We are deeply appreciative to all who helped us out in this time of need with caring for our kids!
As you know, I came home with a new normal. I had both a feeding tube installed in my stomach as well as a colostomy. The feeding tube was supposed to be in my jejunum (the second part of the small intestine) but had retracted around Thanksgiving and was coiled in my stomach. This meant that the feeding tube could not be used at night as we had hoped to give me some supplemental nutrition for weight gain.
Upon getting back, we tried scheduling an appointment with my doctor to have the tube put back in place but a number of issues prevented that from happening but, on the positive side, I was eating very well! I have had a much better appetite after this surgery compared to previous surgeries and have been packing away the food. My weight has not increased as much as I would like but I have continued to eat and will definitely be returning to a weight closer to my normal. I am usually able to eat at least 2500 calories per day and often break 3000 calories per day which helps the healing as well as the weight gain!
Since I was able to eat so well, we started looking at getting the tube removed as it was physically very annoying. It continually pulled and caught on things, causing no end of minor torture to me. I could not hug people on my left side and could not lie on my left side, let alone my stomach at night. After talking to the surgeon, he approved removing the tube after December 14th and, on the 19th, 5 weeks after insertion, my doctor pulled the tube. It took about 1 minute to pull the tube including clipping the stitches and about 10 minutes to fill out the associated paperwork.
That leaves me with the colostomy as the remaining piece of new normal. I have adjusted to it in many ways but there are still several issues that I am finding my way through. One, however, has been resolved! I should be able to play hockey now due to finding ostomy armor. This should help protect me and the bag from the 70mph slap shots that some folks in my league are able to hammer out in my direction.
The cold has been restricting my walking but I am able to drive, pick up Christmas presents, and be a bit less of a pain in the butt to my wife. We fly back out to New Orleans on 1/14 for a visit with my surgeon on 1/15 and I am hoping to return to work the next day. That is a short three weeks away and I am getting quite antsy around the house, wanting to find a way to contribute to the projects at work and to get caught up in their progress.
Of course, we have our annual ski vacation starting the Wednesday following my return to work so I will be immediately taking some vacation time after a hard first week at work. We are heading up to Aspen again this year and I am not going to be in any shape to hike the bowl at Aspen Highlands nor will I be in any condition to ski the 3000 feet of vertical at Ajax mountain non stop. Also, I won't be as insane about getting more runs in every day and I can already hear the base lodge calling out my name!
Christmas has come and gone and there is both snow on the ground and in the mountains. Winter Park/Mary Jane is well over half open and has around a 40" base of the fluffy white stuff. Ski season is here and I have been jealously watching my wife and kids get to enjoy all that winter has to offer them.
The sky is blue, the stars come out every night, I see my kids smile every day and I get to sleep next to my beautiful wife every night. Life is good and I will treasure every day I get to enjoy on this earth with my family!
Thursday, December 27, 2012
Friday, November 23, 2012
We are out of here!
The last few days have made me overjoyed with seeing my kids and parents for the first time in weeks. I didn't really know how much I missed seeing their smiling faces until they showed up in my room. These last two night have lead to the best sleep since I have had surgery, due in no small part to the comfort seeing my family has provided. It has been a gift beyond compare and I can only hope to pay it forward in the future.
The last couple of days have been a bit trying in other ways. On Thanksgiving, my GJ tube had issues with the balloon deflating and the J portion of my tube withdrawing from the small intestine. What this means is that I cannot use the J tube to feed myself when I lay flat, only when I am sitting up so that leads to no night feeding with the J tube.
They can place the J portion into position but the doctor that can do that is on vacation and won't be available until Monday. So, we are going to return home with the J tube inside my stomach and have a GI doc in Colorado Springs place it into position sometime next week.
But that means we are out of here! We have been in the hospital for 17 days now and are getting to know almost all the staff. Nurses, Doctors, food car folks, respiratory,... All are getting to know us and we are getting to know them and that means we definitely need to get out of here!
We will spend tonight at the Hope lodge, have our actual Thanksgiving dinner from Popey's this afternoon/evening and enjoy just some time as a family outside of this room. Saturday will be an easy day with a flight out of NOLA at around 4pm and then a quick drive down from Denver to Colorado Springs to our dog Adi and home.
We have a home health care nurse being set up for next week and will also meet with Dr. Howden to get that J tube positioned correctly. Once that is done, I will be able to do tube feedings at night while feasting during the day. The combination of the two should help to fatten me up considerably over the next few weeks/months and, once a satisfactory weight is achieved and maintained (without the tube feeding), we can have the GJ tube removed.
Recovery is going to be a lot like last time. Taking lots of walks around the block with the dog, trying to get some leg muscle back. Eating as much as as possible to regain all the weight I have lost. Of course, squats, lunges, and stairs to try and get those calves and thighs ready for a good ski season.
In 6 weeks, we will come back out here for our followup care and hopefully a return to work and play shortly thereafter!
I am thankful for a wife to help me through this and that will stand with me
I am thankful for my kids that make my heart soar
I am thankful for my parents and the help and love that they provide me and mine
I am thankful for my friends and their continued kindness, help, thoughts, and notes
I am thankful for brilliant doctors
I am thankful for kind nurses
I am thankful for a company that supports me in my work and recovery
I am thankful for health insurance that covers nearly everything necessary
I am thankful for life and the ability to enjoy it
The last couple of days have been a bit trying in other ways. On Thanksgiving, my GJ tube had issues with the balloon deflating and the J portion of my tube withdrawing from the small intestine. What this means is that I cannot use the J tube to feed myself when I lay flat, only when I am sitting up so that leads to no night feeding with the J tube.
They can place the J portion into position but the doctor that can do that is on vacation and won't be available until Monday. So, we are going to return home with the J tube inside my stomach and have a GI doc in Colorado Springs place it into position sometime next week.
But that means we are out of here! We have been in the hospital for 17 days now and are getting to know almost all the staff. Nurses, Doctors, food car folks, respiratory,... All are getting to know us and we are getting to know them and that means we definitely need to get out of here!
We will spend tonight at the Hope lodge, have our actual Thanksgiving dinner from Popey's this afternoon/evening and enjoy just some time as a family outside of this room. Saturday will be an easy day with a flight out of NOLA at around 4pm and then a quick drive down from Denver to Colorado Springs to our dog Adi and home.
We have a home health care nurse being set up for next week and will also meet with Dr. Howden to get that J tube positioned correctly. Once that is done, I will be able to do tube feedings at night while feasting during the day. The combination of the two should help to fatten me up considerably over the next few weeks/months and, once a satisfactory weight is achieved and maintained (without the tube feeding), we can have the GJ tube removed.
Recovery is going to be a lot like last time. Taking lots of walks around the block with the dog, trying to get some leg muscle back. Eating as much as as possible to regain all the weight I have lost. Of course, squats, lunges, and stairs to try and get those calves and thighs ready for a good ski season.
In 6 weeks, we will come back out here for our followup care and hopefully a return to work and play shortly thereafter!
I am thankful for a wife to help me through this and that will stand with me
I am thankful for my kids that make my heart soar
I am thankful for my parents and the help and love that they provide me and mine
I am thankful for my friends and their continued kindness, help, thoughts, and notes
I am thankful for brilliant doctors
I am thankful for kind nurses
I am thankful for a company that supports me in my work and recovery
I am thankful for health insurance that covers nearly everything necessary
I am thankful for life and the ability to enjoy it
Monday, November 19, 2012
Now the work begins
We moved up to the main floor on Saturday and got our nice big private room that night. It did not help with the sleeping yesterday (or tonight for that matter, looking longingly at the clock) but it has the advantage of not being in the ICU.
So, the surgery went kind of as hoped. In the days going up to surgery, my body was saturated with sandostatin and that prevented the crisis that can be so life threatening. Most of the tumors around the rectum got removed but not all of them. Dr. Boudreaux said that my tumor burden is not huge but what I do have are just in some really bad spots.
Surgery was 'only' 13 or so hours this time. The small intestines were being twisted and bound up by adhesions that were still forming. I am sure Dr. Boudreaux knew this would be the case and it probably is part of what made him hesitant to do surgery in the first place. My right ureter was also being constructed considerably by the tumors that they were not able to fully remove in May/July but a semi-permanent stent should help greatly with saving my kidney.
The tumors around the rectum required a colostomy. I guess that, in some ways, I knew that was a high likelihood but still hoped it could be done without that result. There is the possibility that the ostomy will be reversible and we may look into that a year down the road but this is just part of the new normal as Steph has started calling it.
I also had a G-J tube installed to allow tube feeding directly into my small intestine as well as venting of my stomach. The former allows me to be fed a nearly pre-digested food that generates little if any residue for the intestines to dispose. The latter should help if my intestines start to back up and are unable to process the food in my stomach, reducing the incidence of vomiting or stomach cramps.
As many of you have heard, I do indeed work for the most amazing company in the US. They have always rewarded me very well financially for the work I perform for them and have done some amazing things to support my family through this cancer process. This time, they took it over the top.
Maribeth Dwyer, VP of HR at Metron, had been trying to think of something they could do to help us out on this, our fifth trip to New Orleans for this year. She had already helped out in other ways from gifts to the kids to Avis one day rental car vouchers to books and gift baskets to so many other things that I just cannot detail completely.
On Friday, November 16th, she came up with the ultimate gift. She went to the top people at Metron and suggested that they fly my kids and their caregivers (my parents) out to New Orleans to join with us for what we hope are the final days of our time down here. Maribeth says they didn't even blink and said to do it.
How do you accept a give like this? How do you say thank you loud enough. I have certainly helped Metron earn money over my 16 years with them but still cannot fathom the kindness that is involved in doing something like this. I know that these things cannot be done for everyone in the company but to be the recipient of such wonderful consideration makes my heart leap for joy.
Obviously, if you are a math/science geek, I would recommend you check out Metron for work in the Reston, VA, or San Diego area. They are a cool company that is doing a lot of really cutting edge math, science, physics, and computer science stuff. I would love to hire people in Colorado Springs for Metron but I know we don't have any openings there currently. Obviously, one cannot always expect such grand gestures from Metron but the fact that they have done it even once is stunning.
So, enough about Metron, where am I at? I am struggling with my bowels waking up and getting to the point of eating food. I anxiously await my first bowel movement (do you really call them bowel movements with a colostomy?) and I am making my slow walks around the fifth floor. I had the ureetic stents (they glow during surgery to help the doctors locate them) removed on Saturday and will have new semi-permanent stents inserted on Wednesday along with removing the biliary stent.
I hope to be released later this week and am looking forward to seeing my kids and parents on Wednesday. We have been in NOLA for almost two weeks now and are getting very ready to move on. I hope recovery will be faster than it was in July/August but know that I don't always achieve what I want. I smile at each email I get and always look forward to comments on my blog or signatures in the guest book at Stephanie's caring bridge site.
Of course, GO BRONCOS!
So, the surgery went kind of as hoped. In the days going up to surgery, my body was saturated with sandostatin and that prevented the crisis that can be so life threatening. Most of the tumors around the rectum got removed but not all of them. Dr. Boudreaux said that my tumor burden is not huge but what I do have are just in some really bad spots.
Surgery was 'only' 13 or so hours this time. The small intestines were being twisted and bound up by adhesions that were still forming. I am sure Dr. Boudreaux knew this would be the case and it probably is part of what made him hesitant to do surgery in the first place. My right ureter was also being constructed considerably by the tumors that they were not able to fully remove in May/July but a semi-permanent stent should help greatly with saving my kidney.
The tumors around the rectum required a colostomy. I guess that, in some ways, I knew that was a high likelihood but still hoped it could be done without that result. There is the possibility that the ostomy will be reversible and we may look into that a year down the road but this is just part of the new normal as Steph has started calling it.
I also had a G-J tube installed to allow tube feeding directly into my small intestine as well as venting of my stomach. The former allows me to be fed a nearly pre-digested food that generates little if any residue for the intestines to dispose. The latter should help if my intestines start to back up and are unable to process the food in my stomach, reducing the incidence of vomiting or stomach cramps.
As many of you have heard, I do indeed work for the most amazing company in the US. They have always rewarded me very well financially for the work I perform for them and have done some amazing things to support my family through this cancer process. This time, they took it over the top.
Maribeth Dwyer, VP of HR at Metron, had been trying to think of something they could do to help us out on this, our fifth trip to New Orleans for this year. She had already helped out in other ways from gifts to the kids to Avis one day rental car vouchers to books and gift baskets to so many other things that I just cannot detail completely.
On Friday, November 16th, she came up with the ultimate gift. She went to the top people at Metron and suggested that they fly my kids and their caregivers (my parents) out to New Orleans to join with us for what we hope are the final days of our time down here. Maribeth says they didn't even blink and said to do it.
How do you accept a give like this? How do you say thank you loud enough. I have certainly helped Metron earn money over my 16 years with them but still cannot fathom the kindness that is involved in doing something like this. I know that these things cannot be done for everyone in the company but to be the recipient of such wonderful consideration makes my heart leap for joy.
Obviously, if you are a math/science geek, I would recommend you check out Metron for work in the Reston, VA, or San Diego area. They are a cool company that is doing a lot of really cutting edge math, science, physics, and computer science stuff. I would love to hire people in Colorado Springs for Metron but I know we don't have any openings there currently. Obviously, one cannot always expect such grand gestures from Metron but the fact that they have done it even once is stunning.
So, enough about Metron, where am I at? I am struggling with my bowels waking up and getting to the point of eating food. I anxiously await my first bowel movement (do you really call them bowel movements with a colostomy?) and I am making my slow walks around the fifth floor. I had the ureetic stents (they glow during surgery to help the doctors locate them) removed on Saturday and will have new semi-permanent stents inserted on Wednesday along with removing the biliary stent.
I hope to be released later this week and am looking forward to seeing my kids and parents on Wednesday. We have been in NOLA for almost two weeks now and are getting very ready to move on. I hope recovery will be faster than it was in July/August but know that I don't always achieve what I want. I smile at each email I get and always look forward to comments on my blog or signatures in the guest book at Stephanie's caring bridge site.
Of course, GO BRONCOS!
Tuesday, November 13, 2012
Surgery is on
Well, I am going to be NPO (no food by mouth) after midnight and all the plans appear to be in line for surgery tomorrow. Dr. Boudreaux has been increasing my sandostatin drip steadily to try and saturate the receptors on my tumors to try and avert carcinoid crisis. By the time anesthesia rolls around, I will have been on 500mg sandostatin/hr (normal is about 2.5mg/hr).
Dr. Boudreaux has another small surgery scheduled in the morning before me but is planning on me going down for surgery sometime between 7:30 and 10:00 in the morning on 11/15. Dr. Wang has suggested putting in a G-J tube to try and ease nutrition after surgery and at home for the recovery but I am still uncertain about it. I certainly don't want to be on 24/7 tube feeding and also know the G-J tube needs to be replaced about every 3 months. As with the potential of an ostomy, it is not something I want but it may be something I have to have.
The kids have been doing well with all the support from friends and family and that makes it a relief to have them taken care of. We still have a return flight on Thanksgiving morning and have plans on being able to make it. If all goes well with surgery, this should be an achievable situation. We have even had friends offer to have Thanksgiving dinner sitting in our fridge for when we arrive home and that is just awesome.
I am starting to crave various foods just like I did before the last surgery. I have been thinking about hot wings, chips and queso dip, fried chicken, tacos, a nice steak, and, of course a turkey dinner with all the fixins. I have at least been on a full liquids diet so that has at least had something to swallow and Steph has sneaked in some Popey's spicy mashed potatoes and gravy which does meet the full liquid requirements!
Thanks to all for the help and support we have received. We only hope we could find some way to repay everyone for all they have done for us but know that is not always possible. Hopefully, coming home somewhat healthier will be some sort of thank you! For the next few days, the best place for update will be Steph's caring bridge site as I will be somewhat incommunicado...
Dr. Boudreaux has another small surgery scheduled in the morning before me but is planning on me going down for surgery sometime between 7:30 and 10:00 in the morning on 11/15. Dr. Wang has suggested putting in a G-J tube to try and ease nutrition after surgery and at home for the recovery but I am still uncertain about it. I certainly don't want to be on 24/7 tube feeding and also know the G-J tube needs to be replaced about every 3 months. As with the potential of an ostomy, it is not something I want but it may be something I have to have.
The kids have been doing well with all the support from friends and family and that makes it a relief to have them taken care of. We still have a return flight on Thanksgiving morning and have plans on being able to make it. If all goes well with surgery, this should be an achievable situation. We have even had friends offer to have Thanksgiving dinner sitting in our fridge for when we arrive home and that is just awesome.
I am starting to crave various foods just like I did before the last surgery. I have been thinking about hot wings, chips and queso dip, fried chicken, tacos, a nice steak, and, of course a turkey dinner with all the fixins. I have at least been on a full liquids diet so that has at least had something to swallow and Steph has sneaked in some Popey's spicy mashed potatoes and gravy which does meet the full liquid requirements!
Thanks to all for the help and support we have received. We only hope we could find some way to repay everyone for all they have done for us but know that is not always possible. Hopefully, coming home somewhat healthier will be some sort of thank you! For the next few days, the best place for update will be Steph's caring bridge site as I will be somewhat incommunicado...
Thursday, November 8, 2012
Tentative surgery
Well, a quick update: We have a tentative surgery date of 11/14. Dr. Boudreaux came by after his clinics and said that he has penciled me in for surgery on the 14th and he will try to remove what appears to be a mechanical obstruction of the colon.
While he is in there, he may try removing some additional tumors in the liver and perform some further debulking. The tumors near the rectum will be addressed with some combination of direct removal and nano-knife. There is a non zero possibility that this surgery may result in damage to the rectum or the colon, requiring a temporary ostomy which would be reversed sometime in the future. Obviously, that is not an outcome that I want but it is better than the alternative...
We were hoping to get out of the hospital between now and surgery but Dr. Boudreaux's staff say that that it is not advisable. Insurance problems and liability issues could arise if I am released and then need to return. So, we are going to see about moving to a larger room in the hospital for the next week of our internment.
We have booked a return flight on Southwest for Thanksgiving day. If surgery occurs as planned, I should be out of the hospital with a day or two at the Hope Lodge before we catch the flight back to Denver and the drive home. It probably means that we get pizza for Thanksgiving rather than Stephanie's extravaganza but it will be pizza at home with the family.
So, long trip to New Orleans but hopefully it will be a productive one!
While he is in there, he may try removing some additional tumors in the liver and perform some further debulking. The tumors near the rectum will be addressed with some combination of direct removal and nano-knife. There is a non zero possibility that this surgery may result in damage to the rectum or the colon, requiring a temporary ostomy which would be reversed sometime in the future. Obviously, that is not an outcome that I want but it is better than the alternative...
We were hoping to get out of the hospital between now and surgery but Dr. Boudreaux's staff say that that it is not advisable. Insurance problems and liability issues could arise if I am released and then need to return. So, we are going to see about moving to a larger room in the hospital for the next week of our internment.
We have booked a return flight on Southwest for Thanksgiving day. If surgery occurs as planned, I should be out of the hospital with a day or two at the Hope Lodge before we catch the flight back to Denver and the drive home. It probably means that we get pizza for Thanksgiving rather than Stephanie's extravaganza but it will be pizza at home with the family.
So, long trip to New Orleans but hopefully it will be a productive one!
And so we are waiting again
Well, we are on our third day in NOLA and we have a bit more information but still not much direction. After the physical exam in the ER, Dr Boudreaux said that I had an obviously distended small bowel and this was actually quite tame compared to days previous. He also had some x-rays done that showed a distended colon along with the significant amount of gas I can feel and hear.
Yesterday, I had a lower gastrointestinal series (google it if you are REALLY interested) and I now have a new number one procedure that I never want to have again. Getting an NG tube inserted while conscious was my old number one but this one blew it out of the water. The resident came by this morning and said that, from the scans and reports of the lower GI series, it, again, looks like there is an obstruction around the recto-sigmoid junction. This is right where some tumors were left behind after my last surgery and these are pressing on the junction as well as on the bladder.
At the time of my last surgery, they left these behind because they were considering the multi-viceral transplant for me and did not want to make the transplant more difficult. However, the metastases I have on the peritoneum and diaphram are preventing the option of a multi-viceral transplant and the tumors are likely causing an obstruction that is preventing nutrition now. Dr. Boudreaux proposed 6 weeks ago that we could attack those tumors with the nanoknife and I imagine that is what is going to happen soon.
Unfortunately, we don't know what soon is. We do know that Dr. Boudreaux has surgery this morning and that he also moved all his Friday clinic patents to this afternoon. Other than that, we know nothing. It is possible he moved the clinic patients to free up tomorrow for surgery or he could be going out of town this weekend and that is why he is clearing up Friday. Surgery could be next week, it could be some other time; we just don't know. I do know surgery almost certainly isn't today since I have eaten some breakfast (full liquid diet).
We did get some questions answered yesterday: The nano knife is still approved and available here. They have seen multiple instances of carcinoid crisis during surgery but chest compressions are actually easier when he can just place his hand against the diaphram and the heart. He also said he could just grab a chisel and crack the sternum and perform direct compressions of the heart but that would definitely put an end to this ski season... On the other hand, I would have a scar from groin to neck and that would be somewhat entertaining!
We do have a room at the Hope Lodge through the 20th of November and can easily extend it if necessary (not a lot of traffic there over Thanksgiving...). We also want to thank everyone that is helping out with meals and caring of the kids. It is wonderful to have such good friends and family to support us through these times.
Yesterday, I had a lower gastrointestinal series (google it if you are REALLY interested) and I now have a new number one procedure that I never want to have again. Getting an NG tube inserted while conscious was my old number one but this one blew it out of the water. The resident came by this morning and said that, from the scans and reports of the lower GI series, it, again, looks like there is an obstruction around the recto-sigmoid junction. This is right where some tumors were left behind after my last surgery and these are pressing on the junction as well as on the bladder.
At the time of my last surgery, they left these behind because they were considering the multi-viceral transplant for me and did not want to make the transplant more difficult. However, the metastases I have on the peritoneum and diaphram are preventing the option of a multi-viceral transplant and the tumors are likely causing an obstruction that is preventing nutrition now. Dr. Boudreaux proposed 6 weeks ago that we could attack those tumors with the nanoknife and I imagine that is what is going to happen soon.
Unfortunately, we don't know what soon is. We do know that Dr. Boudreaux has surgery this morning and that he also moved all his Friday clinic patents to this afternoon. Other than that, we know nothing. It is possible he moved the clinic patients to free up tomorrow for surgery or he could be going out of town this weekend and that is why he is clearing up Friday. Surgery could be next week, it could be some other time; we just don't know. I do know surgery almost certainly isn't today since I have eaten some breakfast (full liquid diet).
We did get some questions answered yesterday: The nano knife is still approved and available here. They have seen multiple instances of carcinoid crisis during surgery but chest compressions are actually easier when he can just place his hand against the diaphram and the heart. He also said he could just grab a chisel and crack the sternum and perform direct compressions of the heart but that would definitely put an end to this ski season... On the other hand, I would have a scar from groin to neck and that would be somewhat entertaining!
We do have a room at the Hope Lodge through the 20th of November and can easily extend it if necessary (not a lot of traffic there over Thanksgiving...). We also want to thank everyone that is helping out with meals and caring of the kids. It is wonderful to have such good friends and family to support us through these times.
Friday, October 26, 2012
Back to the OR table
Tonight marks my 11 year anniversary of my cancer diagnosis. I actually did not find out until the 27th as I was too drugged up after my surgery but it was 11 years ago today that the first of many carcinoid tumors were cut from my body. It has been a long journey and there have been some very rough spots but, unfortunately, the rough spots are not yet over.
Over the last few weeks/months, I have been experiencing stomach cramps and rumblings/grumblings in my stomach that can be heard from 10 feet away at times. These have continued to increase in frequency and intensity and, two nights ago, I had nausea and threw up some dinner, 8 hours after eating it. What all these symptoms indicate is that my bowels are becoming obstructed.
I am still passing stool so I am at best only partially obstructed. A CT scan I had this morning confirms this as I have distended loops of my small intestine but no evidence of complete obstruction. A partial obstruction is not life threatening but it can become so if it turns into a complete obstruction as I experienced back in March of this year and 11 years ago. It does, however, need to be resolved.
Since it is not resolving itself and is just becoming more and more intense, surgery is the only real option. To this end, we are making plans to return to New Orleans in about 10 days to have surgery to relieve the constrictions, leading to some significant relief for me. We could probably wait but waiting could lead to my condition deteriorating (weight loss, weakness, ...), making surgery more risky and recovery longer and more stressful.
Fortunately, I am within 6 months of going off of long term disability (LTD) and I will be able to return directly to LTD without any issues. We checked with the Hope Lodge in New Orleans and they have many openings so Stephanie will be able to stay there rather than having to pay for a hotel room.
Surgery should be trivial compared to the three days and 22 hours I experienced back in May/June but it will be major surgery which is never a trivial decision. We are hoping that, besides relieving the partial obstructions, we will be able to have the stent removed from my bile duct. Furthermore, it would be wonderful to get the tumors around my rectum resolved but, since I will be squeezed into their surgery schedule, they may not be able to do this.
What are the plus sides? Well, getting rid of the cramps will be wonderful! Also, I will not get to ski until I have recovered but that should be around the end of December which is right when the snow is finally getting good! If they are unable to address the other tumors, I will have another 6 months to recover and make plans for follow up surgeries and be able to return to LTD without penalty.
Over the last few weeks/months, I have been experiencing stomach cramps and rumblings/grumblings in my stomach that can be heard from 10 feet away at times. These have continued to increase in frequency and intensity and, two nights ago, I had nausea and threw up some dinner, 8 hours after eating it. What all these symptoms indicate is that my bowels are becoming obstructed.
I am still passing stool so I am at best only partially obstructed. A CT scan I had this morning confirms this as I have distended loops of my small intestine but no evidence of complete obstruction. A partial obstruction is not life threatening but it can become so if it turns into a complete obstruction as I experienced back in March of this year and 11 years ago. It does, however, need to be resolved.
Since it is not resolving itself and is just becoming more and more intense, surgery is the only real option. To this end, we are making plans to return to New Orleans in about 10 days to have surgery to relieve the constrictions, leading to some significant relief for me. We could probably wait but waiting could lead to my condition deteriorating (weight loss, weakness, ...), making surgery more risky and recovery longer and more stressful.
Fortunately, I am within 6 months of going off of long term disability (LTD) and I will be able to return directly to LTD without any issues. We checked with the Hope Lodge in New Orleans and they have many openings so Stephanie will be able to stay there rather than having to pay for a hotel room.
Surgery should be trivial compared to the three days and 22 hours I experienced back in May/June but it will be major surgery which is never a trivial decision. We are hoping that, besides relieving the partial obstructions, we will be able to have the stent removed from my bile duct. Furthermore, it would be wonderful to get the tumors around my rectum resolved but, since I will be squeezed into their surgery schedule, they may not be able to do this.
What are the plus sides? Well, getting rid of the cramps will be wonderful! Also, I will not get to ski until I have recovered but that should be around the end of December which is right when the snow is finally getting good! If they are unable to address the other tumors, I will have another 6 months to recover and make plans for follow up surgeries and be able to return to LTD without penalty.
Wednesday, September 26, 2012
Back from NOLA with a hint of a plan
Well, New Orleans was an adventure like normal. We got lots of information on current treatments and future possibilities on Friday and Saturday and then went on a swamp tour on Sunday. Sunday morning was spent mostly in the French Quarter and it is quite impressive the amount of excitement that one sees for a home Saint's game in New Orleans.
Monday morning I was supposed to have an Endoscopic Ultra Sound (EUS) of the tumors near the rectum and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to the stent between my bile duct and duadenem. The EUS was done under twilight anesthesia and proceeded without incident.
The ERCP was another issue. As soon as the anesthesia hit my system, I started to go into carcinoid crisis with my blood pressure dropping to 80/40 or so. After a number of injections of sandostatin, I climbed out of the crisis and the procedure continued. The stent was removed and then replaced. In 3 months, I will have another ERCP to remove the stent, hopefully for good. So, I spent the night in the ICU yet again...
Tuesday morning, my surgeon came by and we chatted for about 45 minutes about the future. From what he had already seen from the EUS, it looks like the tumors around the rectum may be addressable using the nanoknife. Obviously, we would try to address other tumors at that time but how far we will go at that time remains to be seen. Dr. Boudreaux's opinion is that surgery is probably 6 to 18 months out which means that ski season should be on this year!
After getting a CT scan and getting released from the hospital, we went and talked to Dr. Woltering, the oncologist for about half an hour. We went through the tests they had done on my tumors and Dr. Woltering then went and spoke with Dr. Boudreaux for a bit about my situation. Dr. Boudreaux said that I was a time bomb, waiting to go off. Basically, my disease is very advanced and surgery is an exceedingly scary proposition without proper preparation and expectations.
Dr. Woltering said that they will present my case at an upcoming meeting of the minds. Basically, all the doctors at the clinic will get together and discuss my case, the methods they have at their disposal and what is the best course of action. As of now, there are two drugs that may be applicable to slowing the disease for a while. One is Sutent and the other is (I think) temodar. I am not certain on the second drug but we are still up in the air, waiting for the meeting of the minds.
I am hoping for a chance to get in on the PRRT trials that are starting here in the states but, if I do not get in on the trials, we may be taking a trip to Europe to get treated. The treatment assumes that I have a 'Krenning score' of at least 2 (goes from 0-4) and Dr. Woltering thinks I am probably a 3 or better. This means that I should have a positive response to the treatment with only 10% of those who get treatment who do not respond.
Cost is somewhere in the ballpark of $20k and insurance may pay for some, none, or a large portion of the treatment. That remains to be seen. Generally, one needs to pay for the treatment up front (usually they want a wire transfer of the funds) and then one wrestles with the insurance company to get payment. Obviously, this would be out of network and our out of network deductible is about $7k... This means getting on the trial in the states would be fantastic but that is not a guarantee.
So, still no certain plan but we do know that ski season is on for this year. Now if we can just get some snow!
Monday morning I was supposed to have an Endoscopic Ultra Sound (EUS) of the tumors near the rectum and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to the stent between my bile duct and duadenem. The EUS was done under twilight anesthesia and proceeded without incident.
The ERCP was another issue. As soon as the anesthesia hit my system, I started to go into carcinoid crisis with my blood pressure dropping to 80/40 or so. After a number of injections of sandostatin, I climbed out of the crisis and the procedure continued. The stent was removed and then replaced. In 3 months, I will have another ERCP to remove the stent, hopefully for good. So, I spent the night in the ICU yet again...
Tuesday morning, my surgeon came by and we chatted for about 45 minutes about the future. From what he had already seen from the EUS, it looks like the tumors around the rectum may be addressable using the nanoknife. Obviously, we would try to address other tumors at that time but how far we will go at that time remains to be seen. Dr. Boudreaux's opinion is that surgery is probably 6 to 18 months out which means that ski season should be on this year!
After getting a CT scan and getting released from the hospital, we went and talked to Dr. Woltering, the oncologist for about half an hour. We went through the tests they had done on my tumors and Dr. Woltering then went and spoke with Dr. Boudreaux for a bit about my situation. Dr. Boudreaux said that I was a time bomb, waiting to go off. Basically, my disease is very advanced and surgery is an exceedingly scary proposition without proper preparation and expectations.
Dr. Woltering said that they will present my case at an upcoming meeting of the minds. Basically, all the doctors at the clinic will get together and discuss my case, the methods they have at their disposal and what is the best course of action. As of now, there are two drugs that may be applicable to slowing the disease for a while. One is Sutent and the other is (I think) temodar. I am not certain on the second drug but we are still up in the air, waiting for the meeting of the minds.
I am hoping for a chance to get in on the PRRT trials that are starting here in the states but, if I do not get in on the trials, we may be taking a trip to Europe to get treated. The treatment assumes that I have a 'Krenning score' of at least 2 (goes from 0-4) and Dr. Woltering thinks I am probably a 3 or better. This means that I should have a positive response to the treatment with only 10% of those who get treatment who do not respond.
Cost is somewhere in the ballpark of $20k and insurance may pay for some, none, or a large portion of the treatment. That remains to be seen. Generally, one needs to pay for the treatment up front (usually they want a wire transfer of the funds) and then one wrestles with the insurance company to get payment. Obviously, this would be out of network and our out of network deductible is about $7k... This means getting on the trial in the states would be fantastic but that is not a guarantee.
So, still no certain plan but we do know that ski season is on for this year. Now if we can just get some snow!
Saturday, September 22, 2012
No new guts for me (yet)
Stephanie and I have been spending the last couple of days at a patient conference in New Orleans for neuroendocrine tumors. There have been many very good presentations along with a few boring ones and some that have little to nothing to do with my variant of these tumors. Yesterday had a very emotional presentation from a patient who got a multi-viceral transplant.
A multi-viceral transplant is a transplant of two or more of the abdominal organs. This can be any of the small intestine, large intestine, liver, stomach, pancreas, or kidneys but the are all replaced in a single operation lasting about 8 hours. Today we got a presentation from the surgeon who has been performing all of these transplants at the university of Indiana. The transplants have been getting done since about 2005 and have effected a complete cure from neuroendocrine tumors for several people.
The survival charts are also quite interesting. The survival rate drops off as one would expect for the first two years but then it flattens. At this point, there is about a 71% survival rate and this continues for as long as they have been performing the transplants. Furthermore, many of those who have received the transplants are now living without any anti-rejection medication as their bodies have accepted the transplants as their own.
I have tumors constrained to the abdomen which is one of the primary requirements for this transplant and gave us hope for this being a possibility. However, I also have metastatic disease in the peritoneum that surrounds the abdomen. We asked the surgeon if a multi-viceral transplant could include the peritoneum and he said that he has not done it yet but did not see any reason it would not work. However, it is not something that he wants to do at this point.
What this means is that one of the cures we had heard about 3 months ago is not available to us at this time. On the other hand, if I am able to survive for another number of years, they may be willing to attempt this variant of the transplant on someone like me. So, one door closes but it may re-open in the future.
Tuesday we meet with my surgeon and the oncologist. After that meeting, we hope to have a real plan for the next few months/years and I will be posting again shortly after that meeting to let everyone know where we are going and what we will be doing. Thanks everyone for the warm wishes and thoughts as we work through this journey.
A multi-viceral transplant is a transplant of two or more of the abdominal organs. This can be any of the small intestine, large intestine, liver, stomach, pancreas, or kidneys but the are all replaced in a single operation lasting about 8 hours. Today we got a presentation from the surgeon who has been performing all of these transplants at the university of Indiana. The transplants have been getting done since about 2005 and have effected a complete cure from neuroendocrine tumors for several people.
The survival charts are also quite interesting. The survival rate drops off as one would expect for the first two years but then it flattens. At this point, there is about a 71% survival rate and this continues for as long as they have been performing the transplants. Furthermore, many of those who have received the transplants are now living without any anti-rejection medication as their bodies have accepted the transplants as their own.
I have tumors constrained to the abdomen which is one of the primary requirements for this transplant and gave us hope for this being a possibility. However, I also have metastatic disease in the peritoneum that surrounds the abdomen. We asked the surgeon if a multi-viceral transplant could include the peritoneum and he said that he has not done it yet but did not see any reason it would not work. However, it is not something that he wants to do at this point.
What this means is that one of the cures we had heard about 3 months ago is not available to us at this time. On the other hand, if I am able to survive for another number of years, they may be willing to attempt this variant of the transplant on someone like me. So, one door closes but it may re-open in the future.
Tuesday we meet with my surgeon and the oncologist. After that meeting, we hope to have a real plan for the next few months/years and I will be posting again shortly after that meeting to let everyone know where we are going and what we will be doing. Thanks everyone for the warm wishes and thoughts as we work through this journey.
Saturday, July 28, 2012
An amazing doctor
As you all know, I was in New Orleans this past week to meet up with my surgeon for the 6-week post surgical followup. We expected this to be an easy breezy meeting with the removal of my surgical drains, some short discussion of the next two months and a return home. Because of this, my wife did not join me on the trip and we gave my 15 year old son Riley the opportunity to take a trip to a new portion of the country for him.
Well, the visit with the Doctor on Tuesday showed that it was not going to be easy breezy but it should still be quite straight forward. The insertion of a stent between the bile duct and the small intestine would be done Wednesday afternoon as an endoscopy. Many endoscopies are done using twilight anesthesia rather than full anesthesia so we expected to get a cab ride to the hospital and then Riley would get a cab to take us back to the hotel after the procedure.
Since this procedure is a bit more complicated than 'normal' endoscopies, the doctor elected to go with full anesthesia. The anesthesiologist followed the proper protocol for carcinoid crisis, the same procedure used for my three days of surgery 7 weeks ago. For some reason, my body reacted and I immediately went into full carcinoid crisis as soon as anesthesia was given.
Fortunately, Dr. Boudreaux was in another OR and was able to come over and give me bolus injections of sandostatin over and over again until I came right out of crisis and they were able to continue with the procedure. Here is where the amazing doctor story starts.
Because of the crisis, I was not allowed to go home and needed to stay the night in the ICU. Dr. Boudreaux, knowing my son was with me and not my wife, offered Riley the chance to stay at his house for the night, offering to bring him back in the morning when he comes in for surgery or his wife could bring him in later. Riley thanked him but said he would stay at the hotel.
Dr. Boudreaux was not to be denied and found a room on the remodeled fifth floor of the hospital for Riley to stay in. Dr. Boudreaux then drove Riley to the hotel to get all of our stuff, check out of the hotel, and drove Riley back to the hospital to stay the night. I was completely unaware of any of this activity although Stephanie was in the loop the whole time.
This was an amazing act of consideration and compassion by a surgeon who did not have to do any of what he did. If you are considering treatment for your neuroendocrine tumors with the group of doctors in New Orleans, this is exactly what you can anticipate. Excellent care, knowledge, and compassion.
Well, the visit with the Doctor on Tuesday showed that it was not going to be easy breezy but it should still be quite straight forward. The insertion of a stent between the bile duct and the small intestine would be done Wednesday afternoon as an endoscopy. Many endoscopies are done using twilight anesthesia rather than full anesthesia so we expected to get a cab ride to the hospital and then Riley would get a cab to take us back to the hotel after the procedure.
Since this procedure is a bit more complicated than 'normal' endoscopies, the doctor elected to go with full anesthesia. The anesthesiologist followed the proper protocol for carcinoid crisis, the same procedure used for my three days of surgery 7 weeks ago. For some reason, my body reacted and I immediately went into full carcinoid crisis as soon as anesthesia was given.
Fortunately, Dr. Boudreaux was in another OR and was able to come over and give me bolus injections of sandostatin over and over again until I came right out of crisis and they were able to continue with the procedure. Here is where the amazing doctor story starts.
Because of the crisis, I was not allowed to go home and needed to stay the night in the ICU. Dr. Boudreaux, knowing my son was with me and not my wife, offered Riley the chance to stay at his house for the night, offering to bring him back in the morning when he comes in for surgery or his wife could bring him in later. Riley thanked him but said he would stay at the hotel.
Dr. Boudreaux was not to be denied and found a room on the remodeled fifth floor of the hospital for Riley to stay in. Dr. Boudreaux then drove Riley to the hotel to get all of our stuff, check out of the hotel, and drove Riley back to the hospital to stay the night. I was completely unaware of any of this activity although Stephanie was in the loop the whole time.
This was an amazing act of consideration and compassion by a surgeon who did not have to do any of what he did. If you are considering treatment for your neuroendocrine tumors with the group of doctors in New Orleans, this is exactly what you can anticipate. Excellent care, knowledge, and compassion.
Tuesday, July 24, 2012
Look ma, (almost) no tubes!
Almost there at least. Today I met with my surgeon, Dr. Boudreaux, in NOLA for my post surgical followup. I started the day with a cholangiogram and we reviewed that at our appointment. The cholangiogram revealed that there still is a bit of leakage from the bile duct which is not something desirable.
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
Thursday, July 5, 2012
Five weeks post surgery
It is hard to think that five short weeks ago, I was going in for my second day of surgery. I have been home for about three weeks now and, this week, I have finally felt like my recovery is moving forward significantly.
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
Thursday, June 14, 2012
Home again
Man this has been a long path on my cancer journey. 17 days in NOLA and it is wonderful to be back in Colorado again, sleeping in my own bed, hugging my own kids and relaxing on my deck.
Wednesday, we caught our flight from NOLA to Denver and it went off without a hitch. The flight was smooth and we arrived about 20 minutes early into DIA. My cousin and aunt were kind enough to bring us our car at the airport and, 1 hour later, I was holding my kids for all I was worth. I have never been so happy to return home on from a trip, business or pleasure, and hope that I never have to do something so risky, so far from home but know that is probably not in the cards.
Where do we go from here? Well, I hoped that Dr. Boudreaux would remove the JP drain on Tuesday but I am still producing too much from that drain. Dr. Boudreaux wants the daily total to be less than 25ml and I am currently at about 70ml, down from 120 a week ago. Hopefully this will finish up in the next week and I will be able to have that drain removed shortly thereafter.
The other drain goes into the bile duct and will be in until I return for my 6 week followup in July. On that trip, they will inject some dye into the tube and the image the liver to find out how the healing has gone. I am assuming things come out positive and will get the final drain removed on July 24th.
At that point, I hope to return to mostly normal activity. I currently weigh just under 170 pounds when my normal weight about 5 months ago was just over 200. I have a lot of weight to regain, a HUGE amount of muscle mass to grow, and a lot of stamina to recover. After the previous two surgeries, I was ready to resume all normal activities at 6 weeks but neither of those surgeries required me to regrow the amount muscle and endurance that I lost over the last 4 months.
For now, it is a diet high in protein, Ensure shakes, rest, and walking. I was able to do a complete lap around the block today with my wife which is very good. I also need to regrow my bowels and am using Juven to try and get the cilia of the bowels to grow as they have become stunted and flat. I need to get the diarrhea under control without causing constipation or severe gas.
I have a ways to go but I have a fantastic support staff around me. My whole family is very helpful and is going to help me through these weeks and months.
Around September 25th, we will start to firm up our longer term roadmap to find what it really includes. Perhaps a transplant, perhaps a trip to Switzerland, perhaps, perhaps, perhaps. Right now, I am just enjoying being on the right side of the ground and enjoying those that love me all around.
Wednesday, we caught our flight from NOLA to Denver and it went off without a hitch. The flight was smooth and we arrived about 20 minutes early into DIA. My cousin and aunt were kind enough to bring us our car at the airport and, 1 hour later, I was holding my kids for all I was worth. I have never been so happy to return home on from a trip, business or pleasure, and hope that I never have to do something so risky, so far from home but know that is probably not in the cards.
Where do we go from here? Well, I hoped that Dr. Boudreaux would remove the JP drain on Tuesday but I am still producing too much from that drain. Dr. Boudreaux wants the daily total to be less than 25ml and I am currently at about 70ml, down from 120 a week ago. Hopefully this will finish up in the next week and I will be able to have that drain removed shortly thereafter.
The other drain goes into the bile duct and will be in until I return for my 6 week followup in July. On that trip, they will inject some dye into the tube and the image the liver to find out how the healing has gone. I am assuming things come out positive and will get the final drain removed on July 24th.
At that point, I hope to return to mostly normal activity. I currently weigh just under 170 pounds when my normal weight about 5 months ago was just over 200. I have a lot of weight to regain, a HUGE amount of muscle mass to grow, and a lot of stamina to recover. After the previous two surgeries, I was ready to resume all normal activities at 6 weeks but neither of those surgeries required me to regrow the amount muscle and endurance that I lost over the last 4 months.
For now, it is a diet high in protein, Ensure shakes, rest, and walking. I was able to do a complete lap around the block today with my wife which is very good. I also need to regrow my bowels and am using Juven to try and get the cilia of the bowels to grow as they have become stunted and flat. I need to get the diarrhea under control without causing constipation or severe gas.
I have a ways to go but I have a fantastic support staff around me. My whole family is very helpful and is going to help me through these weeks and months.
Around September 25th, we will start to firm up our longer term roadmap to find what it really includes. Perhaps a transplant, perhaps a trip to Switzerland, perhaps, perhaps, perhaps. Right now, I am just enjoying being on the right side of the ground and enjoying those that love me all around.
Friday, June 8, 2012
FREEEEEDOOOOMM
Finally we have left the hospital and are relaxing at the hope lodge. On 6/7 at about 6:30, we were finally discharged from the hospital and I got my first breath of outdoor air in over a week. It is remarkable to look at how far I came in just a few days but we still look forward to how much further I have to go.
Last night was the single most restful night of sleep I have had in the past three months. I slept from 10 until 2am when I went to the bathroom. I went back to bed and then slept to 6:30. Steph and I talked for about 5 minutes and I went back to sleep for another two hours. Over 10 hours of unmedicated sleep was more blissful to me than you can imagine.
Of course, I am also now free from any IV lines for the first time in over two weeks. This has affected my sleep habits considerably as I no longer toss and turn which is something you can't do when you have an IV line in 24/7. This is something that Steph will appreciate greatly as it means that I will not be stealing nearly as many covers as I used to during the night.
I am weak. My legs are shadows of where they once were and I don't know if I could ski top to bottom nonstop on green runs, let alone nonstop on Outhouse. We spent a little time this morning driving around this morning and I am pretty tired at this time, ready for another nap.
I did get some of Stephanie's donut crack this morning and they are as wonderful as she has said. I got a raised doughnut with chocolate frosting and rainbow sprinkles. Normally, I prefer those toppings on a cake doughnut but it really worked here. I have a apple fritter waiting for me and will report on that as well.
Other than recovering strength, my other issue to resolve for now is diarrhea. I have very extreme diarrhea right now but that could just be my bowels relearning to deal with this stuff called solid food. I have a couple of medicines to try and we also see the doctor again next Tuesday if things are not resolved by then.
Coming up in the future, we have a follow up with the surgeon in 6 weeks and then both a neuroendocrine conference for patients along with the full workup by the doctors in September. At that point, we will start to get more definitive about the path forward. We will also be able to really explore and enjoy New Orleans (other than the heat) for that trip.
Thanks again for all your thoughts, messages, emails, phone calls, and other forms of communication. The support from everyone has made this journey more tolerable but we are not done yet and will appreciate it again when we enter the next legs of this journey.
Last night was the single most restful night of sleep I have had in the past three months. I slept from 10 until 2am when I went to the bathroom. I went back to bed and then slept to 6:30. Steph and I talked for about 5 minutes and I went back to sleep for another two hours. Over 10 hours of unmedicated sleep was more blissful to me than you can imagine.
Of course, I am also now free from any IV lines for the first time in over two weeks. This has affected my sleep habits considerably as I no longer toss and turn which is something you can't do when you have an IV line in 24/7. This is something that Steph will appreciate greatly as it means that I will not be stealing nearly as many covers as I used to during the night.
I am weak. My legs are shadows of where they once were and I don't know if I could ski top to bottom nonstop on green runs, let alone nonstop on Outhouse. We spent a little time this morning driving around this morning and I am pretty tired at this time, ready for another nap.
I did get some of Stephanie's donut crack this morning and they are as wonderful as she has said. I got a raised doughnut with chocolate frosting and rainbow sprinkles. Normally, I prefer those toppings on a cake doughnut but it really worked here. I have a apple fritter waiting for me and will report on that as well.
Other than recovering strength, my other issue to resolve for now is diarrhea. I have very extreme diarrhea right now but that could just be my bowels relearning to deal with this stuff called solid food. I have a couple of medicines to try and we also see the doctor again next Tuesday if things are not resolved by then.
Coming up in the future, we have a follow up with the surgeon in 6 weeks and then both a neuroendocrine conference for patients along with the full workup by the doctors in September. At that point, we will start to get more definitive about the path forward. We will also be able to really explore and enjoy New Orleans (other than the heat) for that trip.
Thanks again for all your thoughts, messages, emails, phone calls, and other forms of communication. The support from everyone has made this journey more tolerable but we are not done yet and will appreciate it again when we enter the next legs of this journey.
Wednesday, June 6, 2012
Maybe out of hospital tomorrow!
Dr Wang just stopped by and discussed where we are at. He removed one of the three drains that I have remaining in me and shortened the tubing on another. As long as nothing changes negatively tonight, he said that he will probably be discharging us tomorrow! Yes, Yes, Yes, I know I said 2-3 more days in the hospital but you already knew that I was not a doctor!
We discussed long term treatment and followup care and we will re-evaluate the drains before leaving NOLA to see if they can be taken out. We will then come back to NOLA in about 3 months to get the full office workup and plans for the future.
Dr. Wang is really hot on the idea of the multi-viceral transplant and really thinks I am a good candidate for this procedure. I have tumors everywhere in my gut. I have tumors on and in the intestines, in the liver, on the peritineum, on the rectum, on the ureter, ... Surgery right now on those tumors means fighting through all the scars from previous surgeries and there are just too many tumors to address.
Multi-viceral transplantation is taking the entire gut (intestine, liver, kidneys,...) as a single contained unit, removing it, and replacing it with another. While any transplantation is difficult, this is actually somewhat simple (for a transplantation) because there are only a small number of veins and arteries to connect. There have been a number of successes with this and, while almost certainly requiring a colostomy bag, could lead to a long term solution. Some of those who have had this treatment event are able to get complete off of anti-rejection drugs from the transplant!
Ideal candidates are folks with many tumor sites (check), no tumors elsewhere in the body (check), and are in good physical shape (check). There is, of course, even the possibility of complete cure as long as the cancer is contained completely in the gut which we think is likely true. Will we do this? No clue. It remains to be seen and may start evaluating the possibility in three months when we return to the clinic.
So, anyway, off to the hope loge tomorrow and another couple of days in NOLA before heading home to Colorado Springs to complete my recovery from this surgery!
We discussed long term treatment and followup care and we will re-evaluate the drains before leaving NOLA to see if they can be taken out. We will then come back to NOLA in about 3 months to get the full office workup and plans for the future.
Dr. Wang is really hot on the idea of the multi-viceral transplant and really thinks I am a good candidate for this procedure. I have tumors everywhere in my gut. I have tumors on and in the intestines, in the liver, on the peritineum, on the rectum, on the ureter, ... Surgery right now on those tumors means fighting through all the scars from previous surgeries and there are just too many tumors to address.
Multi-viceral transplantation is taking the entire gut (intestine, liver, kidneys,...) as a single contained unit, removing it, and replacing it with another. While any transplantation is difficult, this is actually somewhat simple (for a transplantation) because there are only a small number of veins and arteries to connect. There have been a number of successes with this and, while almost certainly requiring a colostomy bag, could lead to a long term solution. Some of those who have had this treatment event are able to get complete off of anti-rejection drugs from the transplant!
Ideal candidates are folks with many tumor sites (check), no tumors elsewhere in the body (check), and are in good physical shape (check). There is, of course, even the possibility of complete cure as long as the cancer is contained completely in the gut which we think is likely true. Will we do this? No clue. It remains to be seen and may start evaluating the possibility in three months when we return to the clinic.
So, anyway, off to the hope loge tomorrow and another couple of days in NOLA before heading home to Colorado Springs to complete my recovery from this surgery!
Out of the ICU
I am out of the ICU and can actually use a computer so I thought I should update everyone on my status. I am sure most of you have followed Steph's caring bridge site so I will give a quick summary of the past 7 days.
On Wednesday 5/30, I went in for surgery at 8am and I am sure that Dr. Boudreaux felt his sphincter clench, said a prayer and said something along the lines of "Oh Shit" as soon as he opened me up. There were tumors everywhere. The blood supply was severely cut off to the small intestine and the small intestine was grey, dead like and distended. There was one obvious complete obstruction and twelve other partial obstructions. My liver was littered with tumors with most of the left lobe was pretty much completely tumor.
So, for the first day, they fixed the obstructions and excised the tumors everywhere and removed about half of my left lobe of the liver. They worked some on the ureter and removed tumors around the arteries feeding the intestines and the liver. This took about 12.5hrs and they then left me open so that they could continue surgery the next day. Dr. Boudreaux's day was not over as he then had to get on a plane to harvest an organ for transplant, returning Thursday morning at 5am. I don't know how these guys function at such an incredibly high level on so little sleep.
Day two was an add on surgery day and I was brought back about 2:30 for another 5hrs or so under the knife. Again, this is after Dr. Boudreaux had gotten back early that morning and may (don't know) have had other surgeries that day. They discovered the hepatic artery had failed and put in a graft of a vein to try to repair it. The intestines had lost some of the healthy pink color that returned the previous day so work was done to revive the blood flow. After that, more tumors, more ureter, more, more, more.
Day three was a bonus round surgery day and again started around 2:30 but 'only' went for about 4hrs. They checked up on the artery repair and it was holding. The intestines were continuing to look good so they did some final cleanup work on the ureter, removed yet more tumors and closed up.
They left many things undone, particularly some tumors around the rectum. Those tumors had not compromised the wall of the rectum but could be felt digitally and there was just way too much scar tissue in that area to address it now. Perhaps in the future but we need to really determine what is the best course of action to take at this time and there are many options.
Saturday through Tuesday were spent in the ICU and that is a brutal place to spend any significant amount of time. I had a blood pressure cuff going off every 30 minutes (arterial lines in both wrists would not hold), beeping from the nearly dozen of piggy-backed lines and IV's that went into me. Several old ladies that had a bit of dementia, and would scream for hours at a time, Drs and students coming in to check on me as well as the nurse. I should have asked for a sleep aid but never thought to and will not hesitate to do so in the future.
Finally, Tuesday evening, I get my first meal (bland fish and rice) and got released to a regular recovery room. I also requested a sleep aid so that I could get some solid sleep for the first time in a while. Unfortunately, the meal I had got rejected by my body (stomach did not really know what to do with food) and I threw it up. I begged Stephanie to stay with me that night and she did. Knowing she was there was a huge relief to me and made the night go better.
Throughout the ICU time, Steph has been reading me her blog posts as well as some comments in the guestbook which made the time go better. Thank you everyone who wrote, emailed, called, or texted Stephanie and helped her frame of mind as well as mine.
I am now being fed 6 small meals a day and the first three today seem to be staying down! Food smells great but my stomach is shrunken as well as out of practice. We need to train me back up to where I can eat again at a normal (but not close to a Brian Einswiler) level of feeding.
We don't know much about our long term paths forward but will probably be coming back to NOLA in the next 6 weeks to discuss this will all the surgeons, doctors, radiologist, and interventional radiologists at this group. We also don't know what to expect with respect to return to work. I start long term disability around the end of June and the outcome of the plans to be made will determine when and how I return to work.
I anticipate that we will be staying at room 505 of the Oschner, Kenner hospital (180 W Esplanade Ave Kenner, LA 70065) for the next 2-3 days and then will return to the hope lodge (2609 River Rd
New Orleans, LA 70121) for an additional couple of days, returning on 6/13.
Again, I cannot thank folks enough for their support through this time. It has been exceptionally heartening, even for a emotionless mathematician like me.
On Wednesday 5/30, I went in for surgery at 8am and I am sure that Dr. Boudreaux felt his sphincter clench, said a prayer and said something along the lines of "Oh Shit" as soon as he opened me up. There were tumors everywhere. The blood supply was severely cut off to the small intestine and the small intestine was grey, dead like and distended. There was one obvious complete obstruction and twelve other partial obstructions. My liver was littered with tumors with most of the left lobe was pretty much completely tumor.
So, for the first day, they fixed the obstructions and excised the tumors everywhere and removed about half of my left lobe of the liver. They worked some on the ureter and removed tumors around the arteries feeding the intestines and the liver. This took about 12.5hrs and they then left me open so that they could continue surgery the next day. Dr. Boudreaux's day was not over as he then had to get on a plane to harvest an organ for transplant, returning Thursday morning at 5am. I don't know how these guys function at such an incredibly high level on so little sleep.
Day two was an add on surgery day and I was brought back about 2:30 for another 5hrs or so under the knife. Again, this is after Dr. Boudreaux had gotten back early that morning and may (don't know) have had other surgeries that day. They discovered the hepatic artery had failed and put in a graft of a vein to try to repair it. The intestines had lost some of the healthy pink color that returned the previous day so work was done to revive the blood flow. After that, more tumors, more ureter, more, more, more.
Day three was a bonus round surgery day and again started around 2:30 but 'only' went for about 4hrs. They checked up on the artery repair and it was holding. The intestines were continuing to look good so they did some final cleanup work on the ureter, removed yet more tumors and closed up.
They left many things undone, particularly some tumors around the rectum. Those tumors had not compromised the wall of the rectum but could be felt digitally and there was just way too much scar tissue in that area to address it now. Perhaps in the future but we need to really determine what is the best course of action to take at this time and there are many options.
Saturday through Tuesday were spent in the ICU and that is a brutal place to spend any significant amount of time. I had a blood pressure cuff going off every 30 minutes (arterial lines in both wrists would not hold), beeping from the nearly dozen of piggy-backed lines and IV's that went into me. Several old ladies that had a bit of dementia, and would scream for hours at a time, Drs and students coming in to check on me as well as the nurse. I should have asked for a sleep aid but never thought to and will not hesitate to do so in the future.
Finally, Tuesday evening, I get my first meal (bland fish and rice) and got released to a regular recovery room. I also requested a sleep aid so that I could get some solid sleep for the first time in a while. Unfortunately, the meal I had got rejected by my body (stomach did not really know what to do with food) and I threw it up. I begged Stephanie to stay with me that night and she did. Knowing she was there was a huge relief to me and made the night go better.
Throughout the ICU time, Steph has been reading me her blog posts as well as some comments in the guestbook which made the time go better. Thank you everyone who wrote, emailed, called, or texted Stephanie and helped her frame of mind as well as mine.
I am now being fed 6 small meals a day and the first three today seem to be staying down! Food smells great but my stomach is shrunken as well as out of practice. We need to train me back up to where I can eat again at a normal (but not close to a Brian Einswiler) level of feeding.
We don't know much about our long term paths forward but will probably be coming back to NOLA in the next 6 weeks to discuss this will all the surgeons, doctors, radiologist, and interventional radiologists at this group. We also don't know what to expect with respect to return to work. I start long term disability around the end of June and the outcome of the plans to be made will determine when and how I return to work.
I anticipate that we will be staying at room 505 of the Oschner, Kenner hospital (180 W Esplanade Ave Kenner, LA 70065) for the next 2-3 days and then will return to the hope lodge (2609 River Rd
New Orleans, LA 70121) for an additional couple of days, returning on 6/13.
Again, I cannot thank folks enough for their support through this time. It has been exceptionally heartening, even for a emotionless mathematician like me.
Sunday, June 3, 2012
Wednesday, May 30, 2012
And, here we go!
Surgery day is finally here. At 6am central time on 5/30, we arrive at the hospital and, at 8am central, surgery is supposed to start. Surgery will be long but I can't imagine it taking less than about 8 hours but could be as long as 15 hours.
We spent most of 5/29 at the hospital, talking to Dr. Boudreaux, meeting other staff including the anesthesiologist and getting labs drawn. Dr. Boudreaux filled us in a bit more on what to expect as well as cautioned against what he doesn't know yet.
The number 1 goal of the surgery is to relieve the obstruction. From the scans, it looks like this should be a doable procedure but you never really know until you get inside the body and start examining things directly. The obstruction could be due to adhesions (scar tissue), tumor, reduced blood flow, or any combination of these. Dr. Boudreaux believes it is the latter two and hopes that he will be able to rescue as much bowel as possible. The one specter he raised was the possibility of having to take so much bowel that I am on TPN for life. Hopefully it does not come to that but at least I would still be able to eat, just not receive any nutrition from the food I consume...
The number two goal is the removal of the tumor constricting the ureter of my right kidney. He will have stents inserted into both ureters so that he can service both ureters if necessary but the scans seem to imply only the one has a problem. The stents are also lit! This means that he will be able to actually see the stent and know exactly where the ureter lies rather than just going by feel. Kinda cool!
The third goal is then to address tumors in the liver if he has time. It is likely he will try to cut out the biggest tumors where he sees them and this should reduce the amount of carcinoid syndrome that I experience. At the same time, he will be taking my gall bladder which often gets plugged with sludge from the Sandostatin I am given on a regular basis.
Thoughts, prayers, and emails are appreciated but, throughout and after surgery, I am not the one most in need of the support at this time.
The person now in need of most support is my wife Stephanie. She has a caring bridge site where she will be updating what is going on with the surgery and my recovery but is also where you can leave her some encouraging words. You can also reach Stephanie on facebook or through email (steph at vaniwaarden dot org).
Recovery for me is just a matter of laying in bed, dealing with the pain and waiting for my bowels to wake up. I will be in the ICU for the first two days or so and we don't know if Stephanie will be able to spend the night there or not. Whether she sleeps in the ICU or at the hope lodge, sleep will not come easy for her. We have a large support group of friends but none of them will be in New Orleans so things are going to be tough for Stephanie.
Thanks for all the good wishes that have been sent our way over the last two months of this ordeal but please give Stephanie as much love and support as you can over these next two weeks!
We spent most of 5/29 at the hospital, talking to Dr. Boudreaux, meeting other staff including the anesthesiologist and getting labs drawn. Dr. Boudreaux filled us in a bit more on what to expect as well as cautioned against what he doesn't know yet.
The number 1 goal of the surgery is to relieve the obstruction. From the scans, it looks like this should be a doable procedure but you never really know until you get inside the body and start examining things directly. The obstruction could be due to adhesions (scar tissue), tumor, reduced blood flow, or any combination of these. Dr. Boudreaux believes it is the latter two and hopes that he will be able to rescue as much bowel as possible. The one specter he raised was the possibility of having to take so much bowel that I am on TPN for life. Hopefully it does not come to that but at least I would still be able to eat, just not receive any nutrition from the food I consume...
The number two goal is the removal of the tumor constricting the ureter of my right kidney. He will have stents inserted into both ureters so that he can service both ureters if necessary but the scans seem to imply only the one has a problem. The stents are also lit! This means that he will be able to actually see the stent and know exactly where the ureter lies rather than just going by feel. Kinda cool!
The third goal is then to address tumors in the liver if he has time. It is likely he will try to cut out the biggest tumors where he sees them and this should reduce the amount of carcinoid syndrome that I experience. At the same time, he will be taking my gall bladder which often gets plugged with sludge from the Sandostatin I am given on a regular basis.
Thoughts, prayers, and emails are appreciated but, throughout and after surgery, I am not the one most in need of the support at this time.
The person now in need of most support is my wife Stephanie. She has a caring bridge site where she will be updating what is going on with the surgery and my recovery but is also where you can leave her some encouraging words. You can also reach Stephanie on facebook or through email (steph at vaniwaarden dot org).Recovery for me is just a matter of laying in bed, dealing with the pain and waiting for my bowels to wake up. I will be in the ICU for the first two days or so and we don't know if Stephanie will be able to spend the night there or not. Whether she sleeps in the ICU or at the hope lodge, sleep will not come easy for her. We have a large support group of friends but none of them will be in New Orleans so things are going to be tough for Stephanie.
Thanks for all the good wishes that have been sent our way over the last two months of this ordeal but please give Stephanie as much love and support as you can over these next two weeks!
Monday, May 21, 2012
One week till we fly out!
Time is moving quickly now and it a significant relief to me as well as to my family and friends! Last Thursday was my birthday and was my first birthday where I felt older than my age. My bowels started obstructing again on Wednesday morning and I was starting to have some severe cramps as well as a low grade fever which was really wearing on me. I did get some wonderful presents from my family and friends as well as many well wishes from others.
On Friday, my exceptional wife hosted a get together in my honor at Southside Johnie's and I was amazed at the number of people that came out. I always get encouraging words from different people at different times but seeing a collection of them, all in one place, made my week. I do want to thank everyone who did come out as well as those who expressed their regrets. I also apologize for only staying for about 1.5hrs but that is about 30 minutes longer than Stephanie thought I would be able to handle because of my bowels.
The last two months have been completely controlled by my bowels. For the last three weeks, I have been on a clear liquid diet and, in spite of that, I still get obstructed and it really is very impressive how great the pain can be. Fortunately, the most recent bout with obstruction has finally released today and I am really looking forward to getting a full night of unmedicated sleep!
The party at Southside Johnie's was wonderful and did indeed make my week but, on the same day, I got the news that the nano-knife will be available for my surgery!!! This means that we all set to go. We fly out of Denver on May 28th, have doctor's appointments all day on the 29th and I hope to be in the operating room at 8am on the 30th.
I will then spend the next two days in the ICU for my initial recovery. I understand that I will likely have a number of drains to help my body discharge the fluids from all of the cutting that was done. I also expect that I will be short some number of feet of small intestine (6-8 feet is not unexpected) but hopefully they will leave my illeocecal valve, they will salvage the ureter on my right kidney, and I won't have a colostomy. I know that is a lot to desire but that would be the best possible result.
After the ICU, I will move to the fifth floor, hopefully without any drains, to finish my hospital recovery. We will be waiting for my bowels to wake up which usually starts on the end of day 4 or the start of day 5 if history holds true. As soon as I am able to take solid food, I will probably be discharged from the hospital and will then move to the Hope Lodge to complete my New Orleans recovery.
We plan on returning home on June 13th and we then complete my recovery at home. The nurses say to plan on 12 weeks to recover but I hope to be playing hockey much sooner than 12 weeks. I have had a laparotomy three times before and have always been playing hockey the first opportunity after the 6 week mark (5 weeks and 6 days on the last surgery). That said, I am weaker going into this surgery than I was on the previous surgeries (still down about 20 pounds) and this surgery is going to be much longer and more extensive.
I am still looking forward to food. My mouth still waters at the smell of anything savory and I can assure you that you don't lose your appetite after almost two months on TPN. I can also tell you that not an hour goes by without me thinking of popcorn, chips, crackers, cheese, tacos, french fries, ... As many have suggested after my last blog post, I am going to start being (more?) rude and ordering first from now on!
On Friday, my exceptional wife hosted a get together in my honor at Southside Johnie's and I was amazed at the number of people that came out. I always get encouraging words from different people at different times but seeing a collection of them, all in one place, made my week. I do want to thank everyone who did come out as well as those who expressed their regrets. I also apologize for only staying for about 1.5hrs but that is about 30 minutes longer than Stephanie thought I would be able to handle because of my bowels.
The last two months have been completely controlled by my bowels. For the last three weeks, I have been on a clear liquid diet and, in spite of that, I still get obstructed and it really is very impressive how great the pain can be. Fortunately, the most recent bout with obstruction has finally released today and I am really looking forward to getting a full night of unmedicated sleep!
The party at Southside Johnie's was wonderful and did indeed make my week but, on the same day, I got the news that the nano-knife will be available for my surgery!!! This means that we all set to go. We fly out of Denver on May 28th, have doctor's appointments all day on the 29th and I hope to be in the operating room at 8am on the 30th.
I will then spend the next two days in the ICU for my initial recovery. I understand that I will likely have a number of drains to help my body discharge the fluids from all of the cutting that was done. I also expect that I will be short some number of feet of small intestine (6-8 feet is not unexpected) but hopefully they will leave my illeocecal valve, they will salvage the ureter on my right kidney, and I won't have a colostomy. I know that is a lot to desire but that would be the best possible result.
After the ICU, I will move to the fifth floor, hopefully without any drains, to finish my hospital recovery. We will be waiting for my bowels to wake up which usually starts on the end of day 4 or the start of day 5 if history holds true. As soon as I am able to take solid food, I will probably be discharged from the hospital and will then move to the Hope Lodge to complete my New Orleans recovery.
We plan on returning home on June 13th and we then complete my recovery at home. The nurses say to plan on 12 weeks to recover but I hope to be playing hockey much sooner than 12 weeks. I have had a laparotomy three times before and have always been playing hockey the first opportunity after the 6 week mark (5 weeks and 6 days on the last surgery). That said, I am weaker going into this surgery than I was on the previous surgeries (still down about 20 pounds) and this surgery is going to be much longer and more extensive.
I am still looking forward to food. My mouth still waters at the smell of anything savory and I can assure you that you don't lose your appetite after almost two months on TPN. I can also tell you that not an hour goes by without me thinking of popcorn, chips, crackers, cheese, tacos, french fries, ... As many have suggested after my last blog post, I am going to start being (more?) rude and ordering first from now on!
Wednesday, May 16, 2012
My life on TPN
Well, I don't have any update about my surgery at this time so I thought I would post a bit about how I get my nutrition. Right now, I have a partial bowel obstruction which prevents me from taking in a large amount of food/drink orally which means I need to find another way to get calories, vitamins, and other nutrition. The solution for me is called Total Paranetral Nutrition (TPN).
We start with an approximately 2.4 liter bag of TPN that contains glucose, lipids, and minerals. We mix two vials of additional vitamins and then put in a few milliliters of vitamin C.
We connect this to a small portable IV pump. This pump runs on two C batteries which we swap out once a day when they have expended about 75% of their power. The pump is pre-programmed with the rate for my nutrition and empties about 95% of the bag (they put in a small amount of reserve).
Every night, we swap the old bag for a new one and Stephanie has gotten quite good at it. My Peripherally Inserted Central Catheter (PICC) line has two separate connections so that I can receive multiple things at once. I only use the one connection and, every night, Stephanie flushes one of the ports with 10ml of saline and 5ml of a heparin flush (reduces clotting). The PICC line goes up a vein on my arm and finishes in the middle of my chest, right at the superior Vena Cava, just a few inches from my heart.
The second line is where I get the TPN. Stephanie flushes this as well with 10ml of saline every night and then hooks up the TPN line. Once we are all done, we put the bag and pump in a slightly modified camelbak lobo and I get to wear this 24/7. The TPN line is about 4.5 feet so I usually can lay it next to me when I am sitting or, especially, when I sleep at night. It certainly has reduced the amount of tossing and turning I do when I sleep.
I always change my shirt when I get my TPN swapped out and I take a shower as well. They don't want you to ever turn off the TPN but, while I am getting swapped, 10 minutes for a shower and cleaning up can't hurt. I do have to wrap the PICC line in a plastic bag to keep it dry because we need to be exceptionally cautious about getting an infection in the line. Since I start the TPN in the evening, the bag is quite a bit more empty (and considerably lighter) by the time I get up in the morning and need to lug it around.
TPN gives me about 2400 calories per day which is just enough for a 6'3" adult male weighing 200lbs to maintain his weight. I usually supplement this with Gatorade and various nutritional supplements throughout the day. I have been sticking with only clear liquids since my obstruction seems to be getting a bit worse, seeming to back up more easily, even when I do non clear liquids like Ensure. With the supplemental nutrition I am usually able to add another 400 calories per day and this seems to have reversed my weight loss.
Last full meal? That was April 1, 2012. We went to Red Robin with my niece and her boyfriend after a soccer game up in Denver. I wanted to order the Bleu Ribbon Burger but someone else ordered it before me (I have an aversion to ordering the same thing someone else ordered. Yes, I know that is weird) so I ordered the Prime Chophouse burger. I remember eating all of it and some of the fries but that was the last full meal that I have eaten. Had I known, I would have dealt with my problem and ordered the Bleu Ribbon burger...
The doctors have some calls in to find out if my surgery date is still on but I don't know when they will get back to me. They do their long surgeries on Wednesday and Thursday so I don't expect an answer until Friday. I do have my octreoscan scheduled for next Wednesday in preparation for the neoprobe guided surgery the on the 30th. We just need the go ahead.
We start with an approximately 2.4 liter bag of TPN that contains glucose, lipids, and minerals. We mix two vials of additional vitamins and then put in a few milliliters of vitamin C.
We connect this to a small portable IV pump. This pump runs on two C batteries which we swap out once a day when they have expended about 75% of their power. The pump is pre-programmed with the rate for my nutrition and empties about 95% of the bag (they put in a small amount of reserve).
Every night, we swap the old bag for a new one and Stephanie has gotten quite good at it. My Peripherally Inserted Central Catheter (PICC) line has two separate connections so that I can receive multiple things at once. I only use the one connection and, every night, Stephanie flushes one of the ports with 10ml of saline and 5ml of a heparin flush (reduces clotting). The PICC line goes up a vein on my arm and finishes in the middle of my chest, right at the superior Vena Cava, just a few inches from my heart.
The second line is where I get the TPN. Stephanie flushes this as well with 10ml of saline every night and then hooks up the TPN line. Once we are all done, we put the bag and pump in a slightly modified camelbak lobo and I get to wear this 24/7. The TPN line is about 4.5 feet so I usually can lay it next to me when I am sitting or, especially, when I sleep at night. It certainly has reduced the amount of tossing and turning I do when I sleep.
I always change my shirt when I get my TPN swapped out and I take a shower as well. They don't want you to ever turn off the TPN but, while I am getting swapped, 10 minutes for a shower and cleaning up can't hurt. I do have to wrap the PICC line in a plastic bag to keep it dry because we need to be exceptionally cautious about getting an infection in the line. Since I start the TPN in the evening, the bag is quite a bit more empty (and considerably lighter) by the time I get up in the morning and need to lug it around.
TPN gives me about 2400 calories per day which is just enough for a 6'3" adult male weighing 200lbs to maintain his weight. I usually supplement this with Gatorade and various nutritional supplements throughout the day. I have been sticking with only clear liquids since my obstruction seems to be getting a bit worse, seeming to back up more easily, even when I do non clear liquids like Ensure. With the supplemental nutrition I am usually able to add another 400 calories per day and this seems to have reversed my weight loss.
Last full meal? That was April 1, 2012. We went to Red Robin with my niece and her boyfriend after a soccer game up in Denver. I wanted to order the Bleu Ribbon Burger but someone else ordered it before me (I have an aversion to ordering the same thing someone else ordered. Yes, I know that is weird) so I ordered the Prime Chophouse burger. I remember eating all of it and some of the fries but that was the last full meal that I have eaten. Had I known, I would have dealt with my problem and ordered the Bleu Ribbon burger...
The doctors have some calls in to find out if my surgery date is still on but I don't know when they will get back to me. They do their long surgeries on Wednesday and Thursday so I don't expect an answer until Friday. I do have my octreoscan scheduled for next Wednesday in preparation for the neoprobe guided surgery the on the 30th. We just need the go ahead.
Thursday, May 3, 2012
Time to put some meat on those bones
Food is my big issue right now. I need calories and I need lots of them. My TPN provides about 1500 calories on T-T-S-S and about 1900 calories on MWF. This averages out to just under 1700 calories which a bit lacking for someone 6'3" and who used to be 200 pounds (currently about 175).
As some of you know, I tried some solid food about 1.5 weeks ago. I had some Popeye's Mashed potatoes and Gravy on a Friday night and then some cream of chicken and rice soup on Sunday night. Starting Monday, my bowels were backed up again and they just finally started moving a week after the soup. This means I have had almost 1.5 weeks without supplementing my TPN and it shows.
Based on my prior weight, I should be getting about 2250 calories a day just to maintain that weight. Being about 500 calories shy of that mark means that I will continue to lose weight at a rate of about a pound a week which is exactly what we don't want to have happen.
So, we are returning to a liquid based diet and I have spoken to the nutritionist at the Dr's office about what my options are at this point. There are a number of things I can try (some by the makers of Boost or Ensure) and I will begin giving those a run around the block in my attempt to put on the weight. I would love to be over 180 pounds by the time of surgery but that is a lot to accomplish in the four short weeks I have left.
I had hoped to return to work last Friday but the fatigue that set in with my lack of eating has set those plans back as well. I am torn right now. I feel like a complete slug for my lack of doing anything useful here on the couch but I know I need to be conserving energy and building up my body. Just like anyone else out there, I have a need to be needed and to be useful.
So, will I go back to part time work before my surgery? I don't know. I have to find a way to accomplish both the desire to build up some more body mass as well as the desire to be useful. I thought I was on the path to that 2 weeks ago but the roadblock I have run into has made me question the direction I was heading.
So, for the next couple of days. The focus will be on calories and processing what I am able to consume and we will re-evaluate after that.
As some of you know, I tried some solid food about 1.5 weeks ago. I had some Popeye's Mashed potatoes and Gravy on a Friday night and then some cream of chicken and rice soup on Sunday night. Starting Monday, my bowels were backed up again and they just finally started moving a week after the soup. This means I have had almost 1.5 weeks without supplementing my TPN and it shows.
Based on my prior weight, I should be getting about 2250 calories a day just to maintain that weight. Being about 500 calories shy of that mark means that I will continue to lose weight at a rate of about a pound a week which is exactly what we don't want to have happen.
So, we are returning to a liquid based diet and I have spoken to the nutritionist at the Dr's office about what my options are at this point. There are a number of things I can try (some by the makers of Boost or Ensure) and I will begin giving those a run around the block in my attempt to put on the weight. I would love to be over 180 pounds by the time of surgery but that is a lot to accomplish in the four short weeks I have left.
I had hoped to return to work last Friday but the fatigue that set in with my lack of eating has set those plans back as well. I am torn right now. I feel like a complete slug for my lack of doing anything useful here on the couch but I know I need to be conserving energy and building up my body. Just like anyone else out there, I have a need to be needed and to be useful.
So, will I go back to part time work before my surgery? I don't know. I have to find a way to accomplish both the desire to build up some more body mass as well as the desire to be useful. I thought I was on the path to that 2 weeks ago but the roadblock I have run into has made me question the direction I was heading.
So, for the next couple of days. The focus will be on calories and processing what I am able to consume and we will re-evaluate after that.
Wednesday, April 25, 2012
Finally have a surgery date!
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.
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.
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...
Monday, March 26, 2012
The obvious answer doesn't always work
Man, has it really been that long since I updated this? Sounds like it is time to give everyone a quick status update.
I have consulted with a local Gastroenterologist to see if we could find out what was causing the diarrhea that I have been experiencing. Carcinoid cancer often causes us noids to have diarrhea due to the influence of the metastases that are in the liver and I have long thought that this is why I spend so much time in the bathroom. Well, increased dosages of sandostatin have not controlled the symptoms so we have started looking for alternate explanations.
My GI doc proposed that I may have small bowel overgrowth of bacteria. Your intestines have immense numbers of bacteria to aid in digestion (bacteria actually outnumber the number of 'human' cells in your body) but most of these bacteria are located in your large intestine. For some folks who have had small bowel surgery, the number of bacteria in your small bowel gets seriously out of whack and lead to dumping into your large intestine and, thus, diarrhea.
So, we started on some antibiotics to kill off all the bacteria in the bowel and then went to regrow the large intestine flora with some probiotics. Just as I finished the antibiotics about 5 weeks ago, I started to get very sick. I had trouble keeping food down and had what appeared to be the symptoms of a small bowel obstruction.
After a couple of weeks of this, missing some work, some skiing including the 2011-2012 ski patrol skills test, I am finally back to 'normal' (minus 10 pounds or so). This means I am back to 'normal' diarrhea but at least I am able to eat normally and have stabilized my weight loss.
Moving forward from this, we still need to find out what is going on since the simple answer was not the solution to the bowel problem. I will be doing a 48hour stool collection (yes, it is as fun as it sounds) and the GI doc will be analyzing the output for volume, fat levels, electrolyte levels and other details to see if we can find the reason for the diarrhea.
I had my twice yearly CT scan about on 3/23 and got mostly the same results on it that I have gotten for some time. Masses in the liver, messentary, and pelvis are continuing to demonstrate their slow growth and the small (3mm) lesion in the lung has been stable for some time. The one new development is that there appears to be a mass around the right ureter that is starting to impinge on flow from the right kidney to the bladder. I have not talked to the Dr. about this but my limited research on the web says that this can be addressed non surgically to some extent by insertion of a stent. If nothing else, it is not an urgent condition at this point.
Other than that, life is good. 10 pounds less will make the Deer Creek Challenge a bit more doable. Ski season has sucked this year with Copper Mountain snowfall about 80 inches behind normal and 40 inches behind the worst I have on record for the last 7 years. After the awesomeness that was last years snowfall, I shouldn't complain but I will anyway.
The Run For Hope is currently scheduled for August 4 and we will be there in force once again with as many people in Team Ron as possible. My wife is also planning a benefit dinner mid summer this year with the proceeds going to fund carcinoid research. I would love to see many of you at one or the other event!
I have consulted with a local Gastroenterologist to see if we could find out what was causing the diarrhea that I have been experiencing. Carcinoid cancer often causes us noids to have diarrhea due to the influence of the metastases that are in the liver and I have long thought that this is why I spend so much time in the bathroom. Well, increased dosages of sandostatin have not controlled the symptoms so we have started looking for alternate explanations.
My GI doc proposed that I may have small bowel overgrowth of bacteria. Your intestines have immense numbers of bacteria to aid in digestion (bacteria actually outnumber the number of 'human' cells in your body) but most of these bacteria are located in your large intestine. For some folks who have had small bowel surgery, the number of bacteria in your small bowel gets seriously out of whack and lead to dumping into your large intestine and, thus, diarrhea.
So, we started on some antibiotics to kill off all the bacteria in the bowel and then went to regrow the large intestine flora with some probiotics. Just as I finished the antibiotics about 5 weeks ago, I started to get very sick. I had trouble keeping food down and had what appeared to be the symptoms of a small bowel obstruction.
After a couple of weeks of this, missing some work, some skiing including the 2011-2012 ski patrol skills test, I am finally back to 'normal' (minus 10 pounds or so). This means I am back to 'normal' diarrhea but at least I am able to eat normally and have stabilized my weight loss.
Moving forward from this, we still need to find out what is going on since the simple answer was not the solution to the bowel problem. I will be doing a 48hour stool collection (yes, it is as fun as it sounds) and the GI doc will be analyzing the output for volume, fat levels, electrolyte levels and other details to see if we can find the reason for the diarrhea.
I had my twice yearly CT scan about on 3/23 and got mostly the same results on it that I have gotten for some time. Masses in the liver, messentary, and pelvis are continuing to demonstrate their slow growth and the small (3mm) lesion in the lung has been stable for some time. The one new development is that there appears to be a mass around the right ureter that is starting to impinge on flow from the right kidney to the bladder. I have not talked to the Dr. about this but my limited research on the web says that this can be addressed non surgically to some extent by insertion of a stent. If nothing else, it is not an urgent condition at this point.
Other than that, life is good. 10 pounds less will make the Deer Creek Challenge a bit more doable. Ski season has sucked this year with Copper Mountain snowfall about 80 inches behind normal and 40 inches behind the worst I have on record for the last 7 years. After the awesomeness that was last years snowfall, I shouldn't complain but I will anyway.
The Run For Hope is currently scheduled for August 4 and we will be there in force once again with as many people in Team Ron as possible. My wife is also planning a benefit dinner mid summer this year with the proceeds going to fund carcinoid research. I would love to see many of you at one or the other event!
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