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
Friday, November 23, 2012
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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