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.
Thursday, June 14, 2012
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
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