Today was my first day back to work after the surgery in November. Stephanie and I just returned from New Orleans last night after meeting with my surgeon (Dr. Boudreaux) and the head of surgical oncology (Dr. Woltering) who heads up the neuroendocrine clinic. Dr. Woltering did not spend a large amount of time with us and wants to re-establish a baseline for me now that I have had surgery once again. To this end, I had 8 vials of blood drawn for various tests and will be getting a CT scan of the chest and abdomon, MRI of the liver, and an octreoscan again. We will then return to NOLA at the end of February and begin to formulate a plan forward with Dr. Rodriguez.
We are still looking at a couple of potential treatments. The chemo drugs that are being considered are Temodar/xeloda, Sutent, Afinitor, and a combination of valproic Acid and Black Raspberry Powder. All of these treatments seemed to have anti growth properties when tested against my tumors in petri dishes.
The last of these had the greatest response and we are going to be giving that a try. The downside is that Black Raspberry Powder is exactly what it sounds like. Black Raspberries are freeze dried and ground into a powder and you consume a given dose in a tea or some other method. The dose you take is 1 gram per kilogram of weight per day. This means I would take about 70 grams (equivalent of about 350 black raspberries), soak it in warm water, strain out the sludge the next day and drink that throughout the day.
Most of you know I am usually quite against 'natural' or homeopathic treatments but there is a large amount of scientific material supporting the use of black raspberry and the anti-cancer effects of this. Not to mention, this was directly tested against my tumors in lab conditions and resulted in slowed cancer growth. The downside is the price. As you can imagine, 350 black raspberries (about a pound) equivalent is a bit pricey. The best price I can find is about $300/month for this treatment and it is almost certain that insurance will not pay for this. Ah well.
The other little bombshell that Dr. Boudreaux dropped on us was that the consensus was to just give me reference material for hospice and send me back home. At first, you would think this is exactly what you don't want to hear from your doctor but after a few minutes of consideration, it is exactly what I did want to hear. The consensus was to send me home to die but Dr. Boudreaux decided to operate and the result of that operation has bought me some more time. How long has it bought me? I don't really know but I do know that I have quite a bit of energy now and am able to (and want to) eat voraciously right now.
My first ski day should be this coming Sunday, 1/20 followed by a 5 day (4 ski day) trip to Aspen, starting on 1/23. The week after we get back from Aspen, I will be able to return to the ice and my first day back as goalie should be 2/4 which is awesome. I am becoming accustomed to my new normal. It doesn't mean I have to like the new normal but I am able to live and even thrive with it. The first day of work has gone well and it is nice to start getting back into the swing of things.
Wednesday, January 16, 2013
Thursday, December 27, 2012
And the healing goes on
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!
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!
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.
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