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!
Tuesday, July 24, 2012
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
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