2015: Surgery and Aftermath
View from the SUMMIT! — May 23, 2015
Hi everyone, Madeleine here.
This will be brief since I've been up since 4 am. Tom's sister Sally and I just got back to the hotel a short while ago. Basically everything went very smoothly and as expected. Tom and I enjoyed our dawn walking and gondola commute to the hospital where everyone was friendly and efficient. He was in the operating room for at about 9 hours as far as I could tell. A nurse in the operating room updated me by phone every two hours or so. There were up to 10 doctors (including residents) working on him in various teams and maybe 12 people in there at any one time.
We met with Dr Hunter around 6pm. He said all went well, details later. When we finally got down to the ICU Tom was in a spacious private room, still in recovery mode, 'sleeping' peacefully. He looked better than we thought he would in spite of lots tubes going in and out of him, all hooked up to fancy machines with colorful displays and various beeps and gurgles. The nurses were just changing shifts so he is in the care of a young man from Romania till 7 am. We'll try to make it back there by 9 am when Dr Hunter will be making his rounds.
If you have hung any prayer flags in honor of Tom, as I know some of you have, please post photos of them on his caring bridge photo page :) It would be cool for him to see his virtual basecamp supporters flying flags for him when he gets back to his devices next week. Thanks!
The descent is still steep but Tom is strong and stoic and all of us sherpas and sherpinas, (as Cal calls me) will help him back down. Thanks so much for all the notes, texts, calls and love. Time for a relaxing bath and sleep!
Hi everyone, Madeleine here.
This will be brief since I've been up since 4 am. Tom's sister Sally and I just got back to the hotel a short while ago. Basically everything went very smoothly and as expected. Tom and I enjoyed our dawn walking and gondola commute to the hospital where everyone was friendly and efficient. He was in the operating room for at about 9 hours as far as I could tell. A nurse in the operating room updated me by phone every two hours or so. There were up to 10 doctors (including residents) working on him in various teams and maybe 12 people in there at any one time.
We met with Dr Hunter around 6pm. He said all went well, details later. When we finally got down to the ICU Tom was in a spacious private room, still in recovery mode, 'sleeping' peacefully. He looked better than we thought he would in spite of lots tubes going in and out of him, all hooked up to fancy machines with colorful displays and various beeps and gurgles. The nurses were just changing shifts so he is in the care of a young man from Romania till 7 am. We'll try to make it back there by 9 am when Dr Hunter will be making his rounds.
If you have hung any prayer flags in honor of Tom, as I know some of you have, please post photos of them on his caring bridge photo page :) It would be cool for him to see his virtual basecamp supporters flying flags for him when he gets back to his devices next week. Thanks!
The descent is still steep but Tom is strong and stoic and all of us sherpas and sherpinas, (as Cal calls me) will help him back down. Thanks so much for all the notes, texts, calls and love. Time for a relaxing bath and sleep!
from ICU to Room With a View — May 25, 2015
by Madeleine
What a difference two days makes. Less than 24 hours after Sally and I saw first saw Tom fresh from the operating room, still totally zonked out, we walked with him and his tree of tubes around the whole ICU unit! Today he walked around the 21 room ICU unit twice. The rest of yesterday is already a blur of talking with doctors about what they did to him, making sure he coughed and sat up, and breathed into his incentive spirometer.
It is great talking with our friend Sandy about 'what's next'. Her husband has been on the same track as Tom since day one of the neoadjuvant chemo and radiation therapy in Bend in February (and we have spent a lot of time together in waiting rooms). He had his esophagectomy 2 days before Tom. I met a third man from Medford today who had one on Thursday, so last week our teams did 3 of these long complicated surgeries in a row! I also found out our humble doc, John Hunter, is THE Chief Surgeon for the whole big hospital! Yeah ok, so we won't see him Wednesday because he's going to Chicago to give a lecture. All the residents who follow him around seem to be in awe. The nurses and residents have all been great, like everyone has said they would be.
And, dear Dr. Claude P. came for a nice long visit yesterday just when I needed a boost. He's been through it 5 years ago and being a surgeon too, can explain things the docs don't have time to.
Sally departed for Oakland this morning (thanks for everything Sal!) and the gondola wasn't running, so I put on my hiking boots and daypack and hiked up the hill in the morning mist. It took 40 minutes and since I was dressed for Camp Sherman, got a good sweaty workout on the final flights of stairs. Finding my way through parking garages, long empty tunnels and 3 creepy elevators in the bowels of the hospital was an experience I will share in photos in the next post. Walking on concrete is certainly harder on the feet than my usual soft forest duff.
So today Tom's post-op endorphine 'honeymoon' wore off right after doctors' rounds and he had some more pain. But he was only getting the lowest dose so he agreed to up it a notch. An EKG showed nothing unusual. They do not take any chances in the surgical and trauma ICU unit! Coughing is the worst for him, but also the best over sitting in a chair or walking. More spirometer breathing, a fascinating chat with the thoracic resident surgeon who worked on Tom, various drain issues, starting slowly on the feeding tube, the two block walk, and finally clipping out the central line and gently pulling out the catheter brought the day to a close.
Tom was moved out of the ICU at 7 pm during a nursing shift change. His room has a sweeping view of the Willamette River and south waterfront and in the foreground, the upper gondola station! When the clouds clear, Mt Hood will be right there :) I hiked home while he was watching some basketball and dozing, and hoping for a better night's sleep. That sounds like a great idea for me too, and my scented bathwater is running. Thanks again for all the love and support, it does help us get through this surreal time.
by Madeleine
What a difference two days makes. Less than 24 hours after Sally and I saw first saw Tom fresh from the operating room, still totally zonked out, we walked with him and his tree of tubes around the whole ICU unit! Today he walked around the 21 room ICU unit twice. The rest of yesterday is already a blur of talking with doctors about what they did to him, making sure he coughed and sat up, and breathed into his incentive spirometer.
It is great talking with our friend Sandy about 'what's next'. Her husband has been on the same track as Tom since day one of the neoadjuvant chemo and radiation therapy in Bend in February (and we have spent a lot of time together in waiting rooms). He had his esophagectomy 2 days before Tom. I met a third man from Medford today who had one on Thursday, so last week our teams did 3 of these long complicated surgeries in a row! I also found out our humble doc, John Hunter, is THE Chief Surgeon for the whole big hospital! Yeah ok, so we won't see him Wednesday because he's going to Chicago to give a lecture. All the residents who follow him around seem to be in awe. The nurses and residents have all been great, like everyone has said they would be.
And, dear Dr. Claude P. came for a nice long visit yesterday just when I needed a boost. He's been through it 5 years ago and being a surgeon too, can explain things the docs don't have time to.
Sally departed for Oakland this morning (thanks for everything Sal!) and the gondola wasn't running, so I put on my hiking boots and daypack and hiked up the hill in the morning mist. It took 40 minutes and since I was dressed for Camp Sherman, got a good sweaty workout on the final flights of stairs. Finding my way through parking garages, long empty tunnels and 3 creepy elevators in the bowels of the hospital was an experience I will share in photos in the next post. Walking on concrete is certainly harder on the feet than my usual soft forest duff.
So today Tom's post-op endorphine 'honeymoon' wore off right after doctors' rounds and he had some more pain. But he was only getting the lowest dose so he agreed to up it a notch. An EKG showed nothing unusual. They do not take any chances in the surgical and trauma ICU unit! Coughing is the worst for him, but also the best over sitting in a chair or walking. More spirometer breathing, a fascinating chat with the thoracic resident surgeon who worked on Tom, various drain issues, starting slowly on the feeding tube, the two block walk, and finally clipping out the central line and gently pulling out the catheter brought the day to a close.
Tom was moved out of the ICU at 7 pm during a nursing shift change. His room has a sweeping view of the Willamette River and south waterfront and in the foreground, the upper gondola station! When the clouds clear, Mt Hood will be right there :) I hiked home while he was watching some basketball and dozing, and hoping for a better night's sleep. That sounds like a great idea for me too, and my scented bathwater is running. Thanks again for all the love and support, it does help us get through this surreal time.
4 tubes out, 2 more to go — May 27, 2015
by Madeleine
Hello again,
What a difference two days makes. Yesterday was quiet in the halls of the hospital but busy in the acute care unit. Before I hiked up there, during early rounds Chief Resident Dr Tseng had removed Tom's hated naso-gastro tube and someone from the Pain Team had removed the (wonderful while it lasted) epidural so they could get him back on more anticoagulants. He still could control his own pain meds thru pushing a button that delivered through an IV in his hand, although surprisingly he isn't in that much pain, even when coughing. As per doctor's orders, he walked 3 times...and around the longest lap of his floor, sometimes doing double laps (sound familiar?) The nurses have been wonderful, and unlike in the ICU, they have CNA's to assist them with bathing, walking and other things. He is getting more sleep at night but during the day someone is always doing the proverbial poking and prodding, giving him meds (and now increasing amounts of 'food' through the new j tube) and checking everything about him including intense interest in getting the 'hindgut' moving again, which the nurses say is cause for a party. 🎉🎊🎈No one has ever awaited one of Tom's farts with so much anticipation...!
Early this morning before I arrived, Dr Tseng had already pulled out the gnarly looking neck drain (where the all important anastomosis is) and Dr Hunter had paid a visit on his way to the airport. He's giving a lecture in Chicago tomorrow. A nurse practitioner came by and finally removed one of the big chest drains, the one on Tom's left side. It didn't hurt but caused a lot of 'dressing management' by the nurses. It seems his big lungs have a lot of fluids to drain, which they assured us is normal. Today the nurses had student nurses trailing them as did the CNA's so there were twice as many people doing things at all times. A large group of surgeons dropped in, followed by Chief Fellow Dr Pham (finishing 6 years of specialized training in surgery next month, after 8 years of med school, now looking for a job)
Volunteers came by to do whatever, a music therapist played lovely music in the halls, and daring window washers entertained us outside. The windows on this gleaming new building are spotless I must say, which makes the view enjoyable even if Mt Hood has hardly peeked out. We opened a box from the Marin grandchildren containing a cute hand made mobile of photos and artwork encouraging Tom to get well soon :) On one of his 5 much faster walks today (triple laps...) Tom got to visit briefly with the other two men down the hall who had their esophajectomies on Wednesday and Thursday. We found out Thursday is a general surgeon who had someone film his operation! We wives exchange info and support, which is great. It was a busy day but Tom told me he felt he'd climbed over a small pass energetically, and that is a beautiful thing.
by Madeleine
Hello again,
What a difference two days makes. Yesterday was quiet in the halls of the hospital but busy in the acute care unit. Before I hiked up there, during early rounds Chief Resident Dr Tseng had removed Tom's hated naso-gastro tube and someone from the Pain Team had removed the (wonderful while it lasted) epidural so they could get him back on more anticoagulants. He still could control his own pain meds thru pushing a button that delivered through an IV in his hand, although surprisingly he isn't in that much pain, even when coughing. As per doctor's orders, he walked 3 times...and around the longest lap of his floor, sometimes doing double laps (sound familiar?) The nurses have been wonderful, and unlike in the ICU, they have CNA's to assist them with bathing, walking and other things. He is getting more sleep at night but during the day someone is always doing the proverbial poking and prodding, giving him meds (and now increasing amounts of 'food' through the new j tube) and checking everything about him including intense interest in getting the 'hindgut' moving again, which the nurses say is cause for a party. 🎉🎊🎈No one has ever awaited one of Tom's farts with so much anticipation...!
Early this morning before I arrived, Dr Tseng had already pulled out the gnarly looking neck drain (where the all important anastomosis is) and Dr Hunter had paid a visit on his way to the airport. He's giving a lecture in Chicago tomorrow. A nurse practitioner came by and finally removed one of the big chest drains, the one on Tom's left side. It didn't hurt but caused a lot of 'dressing management' by the nurses. It seems his big lungs have a lot of fluids to drain, which they assured us is normal. Today the nurses had student nurses trailing them as did the CNA's so there were twice as many people doing things at all times. A large group of surgeons dropped in, followed by Chief Fellow Dr Pham (finishing 6 years of specialized training in surgery next month, after 8 years of med school, now looking for a job)
Volunteers came by to do whatever, a music therapist played lovely music in the halls, and daring window washers entertained us outside. The windows on this gleaming new building are spotless I must say, which makes the view enjoyable even if Mt Hood has hardly peeked out. We opened a box from the Marin grandchildren containing a cute hand made mobile of photos and artwork encouraging Tom to get well soon :) On one of his 5 much faster walks today (triple laps...) Tom got to visit briefly with the other two men down the hall who had their esophajectomies on Wednesday and Thursday. We found out Thursday is a general surgeon who had someone film his operation! We wives exchange info and support, which is great. It was a busy day but Tom told me he felt he'd climbed over a small pass energetically, and that is a beautiful thing.
Tom Again — May 27, 2015
Okay, here I am again. In all truth, it's been quite a while since I felt like communicating. Duh. Hospitals are no fun and recovery from surgery is no fun either. That being said, the level of care at OHSU has been nothing short of fantastic, from surgeons on down to nursing aides.
I walk the outer periphery of the hospital floor every day. 10 laps is a mile approximately. I do five or six laps five times during the day. It's important to build fitness as soon as possible after such a long and complicated operation. I am just starting to feel some semblance of my old self returning.
I do my "sip test " tomorrow. This is to see if a thimbleful of water can pass the anastomosis where they stitched what is left of my esophagus to what is left of my stomach after they cut the cancer out sIx days ago. If this works they make sure that the stitching is tight with a barium test (esophagram) on Friday. Once I pass that test, I can start drinking clear fluids. Up until now all my nutrition and hydration has gone via feeding tube directly into my small intestine. Oh, how I long for even a small sip of water at the moment. This is no fun and simply enduring all the shit I have to go through is the hardest test I have ever been through. Things can only get better from here, however so I am starting to feel upbeat.
If the tests go well, they are in talking about letting me out of here on Saturday. We will probably stay overnight at the hotel here in Portland and head home to Camp Sherman on Sunday.
Okay, here I am again. In all truth, it's been quite a while since I felt like communicating. Duh. Hospitals are no fun and recovery from surgery is no fun either. That being said, the level of care at OHSU has been nothing short of fantastic, from surgeons on down to nursing aides.
I walk the outer periphery of the hospital floor every day. 10 laps is a mile approximately. I do five or six laps five times during the day. It's important to build fitness as soon as possible after such a long and complicated operation. I am just starting to feel some semblance of my old self returning.
I do my "sip test " tomorrow. This is to see if a thimbleful of water can pass the anastomosis where they stitched what is left of my esophagus to what is left of my stomach after they cut the cancer out sIx days ago. If this works they make sure that the stitching is tight with a barium test (esophagram) on Friday. Once I pass that test, I can start drinking clear fluids. Up until now all my nutrition and hydration has gone via feeding tube directly into my small intestine. Oh, how I long for even a small sip of water at the moment. This is no fun and simply enduring all the shit I have to go through is the hardest test I have ever been through. Things can only get better from here, however so I am starting to feel upbeat.
If the tests go well, they are in talking about letting me out of here on Saturday. We will probably stay overnight at the hotel here in Portland and head home to Camp Sherman on Sunday.
Good News and Bad — May 29, 2015
Okay. Got your attention?
The good news is so very, very good that the bad pales in comparison.
I am cancer free, as proven by the pathology report that came in this afternoon. Too, I passed my barium swallow test today which shows that the main connection of my new upper G.I. tract is secure and working properly. These are the two elements that the surgeons need to declare that they have cured my cancer. It is fantastic to know that all the shit I've been through since January 8th and into the foreseeable future will have been worth it.
There is an unfourseen abnormality of my lymph system which requires that I stay another few days in the hospital for its resolution. Bummer. It's a great hospital, but I hate it here. Small potatoes in the big picture, however, to have to stay here for a few more days.
There is a lot more I could say to explain and expand upon these factors, but right now I'm just too tired. Adios.
Tom
Okay. Got your attention?
The good news is so very, very good that the bad pales in comparison.
I am cancer free, as proven by the pathology report that came in this afternoon. Too, I passed my barium swallow test today which shows that the main connection of my new upper G.I. tract is secure and working properly. These are the two elements that the surgeons need to declare that they have cured my cancer. It is fantastic to know that all the shit I've been through since January 8th and into the foreseeable future will have been worth it.
There is an unfourseen abnormality of my lymph system which requires that I stay another few days in the hospital for its resolution. Bummer. It's a great hospital, but I hate it here. Small potatoes in the big picture, however, to have to stay here for a few more days.
There is a lot more I could say to explain and expand upon these factors, but right now I'm just too tired. Adios.
Tom
Complications — Jun 3, 2015
The complications I mentioned in my last post necessitated that I stay six more days in the hospital. Depressing and very frustrating. With luck I should be out of here tomorrow, but we must stay in Portland near medical care in case anything else comes up. I long to be home, but it looks like that will not happen until the 12th at the earliest
The complications I mentioned in my last post necessitated that I stay six more days in the hospital. Depressing and very frustrating. With luck I should be out of here tomorrow, but we must stay in Portland near medical care in case anything else comes up. I long to be home, but it looks like that will not happen until the 12th at the earliest
On the Mend — Jun 7, 2015
it is Sunday. Mad and I are ensconced at the River's Edge Hotel, where she has been staying all along. If anyone wishes to visit, feel free. Just let us know in advance.
I must apologize for being so quiet the last few days. Getting out of the hospital on Thursday, I was just so overwhelmed with joy that I have just been floating along on that wave of happiness. I still feel crappy at times, but it is so much easier to endure on the outside. I still have to take medication in the middle of the night, but blessed sleep is much easier to obtain here.
Now that we are on our own, taking care of me is daunting. On Thursday, Mad was especially stressed, with the prospect of everything suddenly dropping onto her shoulders. I'm trying to help her as much as I can, but I'm still in a state of fatigue.It's getting better every day, and so am I. Mostly it is management of meds and diet. It's amazing how many pills and potions I must take.
i can ingest liquids by mouth, but no more than 3 oz. per hour. All the meds and nutrition go directly to my small intestine via feeding tube. I am hooked up to my "feed bag" right now and was so most of the night as well. I'm married to the tube for at least six weeks. During that time I gradually eat more by mouth, until the tube becomes superfluous. It's a long process that will certainly test my patience.
I have appointments with my surgeons on Tuesday and Thursday. As long as they don't discover further complications, we should make it home by the weekend.
Thats it for now. Love and gratitude radiate out to all of you who care so much.
it is Sunday. Mad and I are ensconced at the River's Edge Hotel, where she has been staying all along. If anyone wishes to visit, feel free. Just let us know in advance.
I must apologize for being so quiet the last few days. Getting out of the hospital on Thursday, I was just so overwhelmed with joy that I have just been floating along on that wave of happiness. I still feel crappy at times, but it is so much easier to endure on the outside. I still have to take medication in the middle of the night, but blessed sleep is much easier to obtain here.
Now that we are on our own, taking care of me is daunting. On Thursday, Mad was especially stressed, with the prospect of everything suddenly dropping onto her shoulders. I'm trying to help her as much as I can, but I'm still in a state of fatigue.It's getting better every day, and so am I. Mostly it is management of meds and diet. It's amazing how many pills and potions I must take.
i can ingest liquids by mouth, but no more than 3 oz. per hour. All the meds and nutrition go directly to my small intestine via feeding tube. I am hooked up to my "feed bag" right now and was so most of the night as well. I'm married to the tube for at least six weeks. During that time I gradually eat more by mouth, until the tube becomes superfluous. It's a long process that will certainly test my patience.
I have appointments with my surgeons on Tuesday and Thursday. As long as they don't discover further complications, we should make it home by the weekend.
Thats it for now. Love and gratitude radiate out to all of you who care so much.
A Reversal of Fortune — Jun 20, 2015
So much has happened in the last week that I hardly know where to begin. Bottom line, I'm back in the hospital in Portland for at least another week due to the vexing complications that have made my recovery so difficult. We were only home for four days before developments forced us to return to OHSU for further treatment.
It all boils down to a chyle leak that fills my chest cavity with fluid. This stems from a lymph system duct that didn't get sealed off during the original surgery. This is rare, happening in about one percent of cases. Hey, I'm used to being in the top one percent physically, not the bottom! Terribly, frustratingly bad luck in this case.
Monday night chyle started leaking out of the site of one of my original chest tubes. We were up most of the night dealing with this situation. Ultimately we collected about three liters of fluid. No wonder I had been feeling so short of breath.
Then Tuesday morning while we were trying to figure out creative ways of dealing with the leak, I started feeling pressure in my chest. Heart attack? Call 911. The house was suddenly inundated by EMT's from three different agencies. Quickly they determined
that it was not a heart issue, but recommended I go to the ER anyway, just in case. Wow! My very first ride in an ambulance.
By the time I got to Bend the powers that be had already conferred with my doctors in Portland and determined that I should be airlifted immediately to the hospital there due to all the problems Madeleine and I were having dealing with the situation at home. So, by Tuesday night I was back that OHSU hospital, same floor, different room. I got a scenic private plane ride out of it, while Madeleine drove over from Camp Sherman, arriving about midnight and staying overnight with me.
On Wednesday they inserted "pigtail" drains to take care of fluid accumulating in my pleural spaces. They drain my chest cavity constantly and are connected to collection devices which precisely measure the output. Low flow is good. A lot drained out at first, but it has been diminishing as time goes by. The drains pass through the chest wall to the outside low down on either side of my back and have proven to be a source of quite a bit of pain. Pain meds keep up with it most of the time, but I don't like to have to depend on them.
My doctors, and there are many now, are perplexed by how to find the leak and plug it. "It's a plumbing problem that we'll eventually figure out," they maintain. Meanwhile we are in limbo. Thursday I was sent to Interventional Radiology where the very specialized procedure was a "lymph angiogram and thoracic duct embolization". I now have surgical superglue inside me, placed by the excellent chair of the dept. (interesting fact: angiograms were invented in the same room my procedure was in) Result was inconclusive, but hopeful. Google it if you want to know the details; I don't want to expound upon it here. Yesterday it was down to Nuclear Medicine to the gamma camera for lymphoscintigraphy, a five hour procedure to rule out lymph leaks in my arms and shoulders. TMI? Okay, enough of that.
Meanwhile, we asked if we could move back to the east side of Kohler Pavilion and since we know most of the nurses here now, we got the VIP suite! So we sit around in a big swanky hospital room with a beautiful view of Mt. Hood while the medicos scratch their heads and wonder if their treatments have been effective. Will they send me home next week or schedule me for further tests and operations? Only time will tell what the next steps will be.
Stay tuned. I'll try not to be so uncommunicative this time around.
Tom
Mad here.
Yes, it's been a wild ride! I've been wanting to blog but things were changing too fast and it took a few days to catch up on sleep. I've been sleeping up here on the fairly comfortable padded window seat beds to keep Tom company and to be here when the doctors make their early rounds. The night shift nurses are great about clustering his care, and they don't come in between about midnight and 6 am except (quietly) to give pain meds. Now that we're in "wait for the tincture of time" mode, I plan to move back down to the River's Edge Hotel this evening so I can finally unpack my suitcase (in the car in the park garage), spread my meditation stuff out, and eat somewhere else besides the 24 hour cafeteria. It is decent and inexpensive and a .36 mile round trip walk using two elevators, but I need to get outside a bit more too. I have enjoyed riding the tram down to a great juice bar and hiking back up past people's wonderful hydrangea and rose bushes in the early evenings.
We have the room and Tom is feeling up to having visitors so please call him if you are healthy and would like to make a short visit. I left the house in such a flurry that I forgot to bring the prayer flags back. We would love it if someone brought another string of them to hang in the window and show the world he's still in base camp. Thanks! He's in the big blueish glass building right behind the top of the tram, Kohler Pavilion, on 13K room 14, all the way back on the right beyond the hand washing station. 541-419-2321. If he' s napping, just leave a message or email. Thanks to everyone for continued encouragement and support!
So much has happened in the last week that I hardly know where to begin. Bottom line, I'm back in the hospital in Portland for at least another week due to the vexing complications that have made my recovery so difficult. We were only home for four days before developments forced us to return to OHSU for further treatment.
It all boils down to a chyle leak that fills my chest cavity with fluid. This stems from a lymph system duct that didn't get sealed off during the original surgery. This is rare, happening in about one percent of cases. Hey, I'm used to being in the top one percent physically, not the bottom! Terribly, frustratingly bad luck in this case.
Monday night chyle started leaking out of the site of one of my original chest tubes. We were up most of the night dealing with this situation. Ultimately we collected about three liters of fluid. No wonder I had been feeling so short of breath.
Then Tuesday morning while we were trying to figure out creative ways of dealing with the leak, I started feeling pressure in my chest. Heart attack? Call 911. The house was suddenly inundated by EMT's from three different agencies. Quickly they determined
that it was not a heart issue, but recommended I go to the ER anyway, just in case. Wow! My very first ride in an ambulance.
By the time I got to Bend the powers that be had already conferred with my doctors in Portland and determined that I should be airlifted immediately to the hospital there due to all the problems Madeleine and I were having dealing with the situation at home. So, by Tuesday night I was back that OHSU hospital, same floor, different room. I got a scenic private plane ride out of it, while Madeleine drove over from Camp Sherman, arriving about midnight and staying overnight with me.
On Wednesday they inserted "pigtail" drains to take care of fluid accumulating in my pleural spaces. They drain my chest cavity constantly and are connected to collection devices which precisely measure the output. Low flow is good. A lot drained out at first, but it has been diminishing as time goes by. The drains pass through the chest wall to the outside low down on either side of my back and have proven to be a source of quite a bit of pain. Pain meds keep up with it most of the time, but I don't like to have to depend on them.
My doctors, and there are many now, are perplexed by how to find the leak and plug it. "It's a plumbing problem that we'll eventually figure out," they maintain. Meanwhile we are in limbo. Thursday I was sent to Interventional Radiology where the very specialized procedure was a "lymph angiogram and thoracic duct embolization". I now have surgical superglue inside me, placed by the excellent chair of the dept. (interesting fact: angiograms were invented in the same room my procedure was in) Result was inconclusive, but hopeful. Google it if you want to know the details; I don't want to expound upon it here. Yesterday it was down to Nuclear Medicine to the gamma camera for lymphoscintigraphy, a five hour procedure to rule out lymph leaks in my arms and shoulders. TMI? Okay, enough of that.
Meanwhile, we asked if we could move back to the east side of Kohler Pavilion and since we know most of the nurses here now, we got the VIP suite! So we sit around in a big swanky hospital room with a beautiful view of Mt. Hood while the medicos scratch their heads and wonder if their treatments have been effective. Will they send me home next week or schedule me for further tests and operations? Only time will tell what the next steps will be.
Stay tuned. I'll try not to be so uncommunicative this time around.
Tom
Mad here.
Yes, it's been a wild ride! I've been wanting to blog but things were changing too fast and it took a few days to catch up on sleep. I've been sleeping up here on the fairly comfortable padded window seat beds to keep Tom company and to be here when the doctors make their early rounds. The night shift nurses are great about clustering his care, and they don't come in between about midnight and 6 am except (quietly) to give pain meds. Now that we're in "wait for the tincture of time" mode, I plan to move back down to the River's Edge Hotel this evening so I can finally unpack my suitcase (in the car in the park garage), spread my meditation stuff out, and eat somewhere else besides the 24 hour cafeteria. It is decent and inexpensive and a .36 mile round trip walk using two elevators, but I need to get outside a bit more too. I have enjoyed riding the tram down to a great juice bar and hiking back up past people's wonderful hydrangea and rose bushes in the early evenings.
We have the room and Tom is feeling up to having visitors so please call him if you are healthy and would like to make a short visit. I left the house in such a flurry that I forgot to bring the prayer flags back. We would love it if someone brought another string of them to hang in the window and show the world he's still in base camp. Thanks! He's in the big blueish glass building right behind the top of the tram, Kohler Pavilion, on 13K room 14, all the way back on the right beyond the hand washing station. 541-419-2321. If he' s napping, just leave a message or email. Thanks to everyone for continued encouragement and support!
Fantastic Surprise — Jun 24, 2015
It is hard to get a full nights sleep here in the hospital. Consequently, during the day I nap quite a bit. Yesterday I awakened grogilly from my late morning nap to find Madeleine and another man sitting in my room. To my surprise and delight, the mystery man was son Hayden, who had flown up for the day from San Francisco. It was wonderful to see him and spend half the day with him. It really brightened up my day to have him here. Madeleine's continual presence is great comfort and solace, but being here can be quite boring. Thank you, thank you, Hayden!!
Things are pretty uncertain here as to when I will get out. There is a lot of waiting around to see how I will respond to various treatments. So far my responses have been inconclusive. I passed my first "fat challenge", but fluid discharge from my chest has been more copious than they would like. So, we are waiting around for the discharge to diminish. Tomorrow I have another fat challenge. If no chyle shows up that will be really good, otherwise it's back to square one. If the fluid continues to flow at high levels, there are other treatments being considered, but I won't elaborate now.
Thank you, everyone, for you continual caring support! Thanks Peter, Scott and Paul, Martha and Russ for visiting and providing Mad with some much needed distractions away from the hospital.
Tom
It is hard to get a full nights sleep here in the hospital. Consequently, during the day I nap quite a bit. Yesterday I awakened grogilly from my late morning nap to find Madeleine and another man sitting in my room. To my surprise and delight, the mystery man was son Hayden, who had flown up for the day from San Francisco. It was wonderful to see him and spend half the day with him. It really brightened up my day to have him here. Madeleine's continual presence is great comfort and solace, but being here can be quite boring. Thank you, thank you, Hayden!!
Things are pretty uncertain here as to when I will get out. There is a lot of waiting around to see how I will respond to various treatments. So far my responses have been inconclusive. I passed my first "fat challenge", but fluid discharge from my chest has been more copious than they would like. So, we are waiting around for the discharge to diminish. Tomorrow I have another fat challenge. If no chyle shows up that will be really good, otherwise it's back to square one. If the fluid continues to flow at high levels, there are other treatments being considered, but I won't elaborate now.
Thank you, everyone, for you continual caring support! Thanks Peter, Scott and Paul, Martha and Russ for visiting and providing Mad with some much needed distractions away from the hospital.
Tom
Damn — Jun 29, 2015
When I saw the fluid in my left chest drain tube turn milky, my heart sank. Damn, I've failed the "fat challenge". Back to square one. Well, not completely, as we know some things we didn't know before. We know what we've been doing has not plugged the chyle leak nor diminished the volume of flow.
It had been hoped that a special diet and the "tincture of time" would solve the problems, but that is not the case. So what happens now? Tomorrow I undergo a procedure called pleurodesis, which in simplest terms means that they will seal off the gap between my lung and adjacent chest wall. This is a shotgun approach which in effect seals off the source of the chyle leak from the rest of my pleural cavity. They say it is very painful but that through the wonder drugs I will not remember anything. So, the saga continues.
When I saw the fluid in my left chest drain tube turn milky, my heart sank. Damn, I've failed the "fat challenge". Back to square one. Well, not completely, as we know some things we didn't know before. We know what we've been doing has not plugged the chyle leak nor diminished the volume of flow.
It had been hoped that a special diet and the "tincture of time" would solve the problems, but that is not the case. So what happens now? Tomorrow I undergo a procedure called pleurodesis, which in simplest terms means that they will seal off the gap between my lung and adjacent chest wall. This is a shotgun approach which in effect seals off the source of the chyle leak from the rest of my pleural cavity. They say it is very painful but that through the wonder drugs I will not remember anything. So, the saga continues.
A Waiting Game — Jul 2, 2015
A lot of you have been asking how the pleurodesis went onTuesday. My doctors are guardedly optimistic that it was successful, but we will not know until I pass another "fat challenge". That should occur on Friday. Fingers crossed.
When the nurse from "rapid response" came to collect me for transfer to the ICU, he was surprised that I was ambulatory. "This is the first time I have ever had a patient walk down there," he declared.
Preparatory to the procedure, at Intensive Care, they connected me to their dizzying array of monitoring devices. Dr. Schipper arrived to perform the procedure, which involves injecting a chemical irritant between the lung and chest wall. "This will be painful, but we'll give you something to make sure you don't remember a thing," he said. He was right about the pain, but I certainly do remember it. Ouch!
A lot of you have been asking how the pleurodesis went onTuesday. My doctors are guardedly optimistic that it was successful, but we will not know until I pass another "fat challenge". That should occur on Friday. Fingers crossed.
When the nurse from "rapid response" came to collect me for transfer to the ICU, he was surprised that I was ambulatory. "This is the first time I have ever had a patient walk down there," he declared.
Preparatory to the procedure, at Intensive Care, they connected me to their dizzying array of monitoring devices. Dr. Schipper arrived to perform the procedure, which involves injecting a chemical irritant between the lung and chest wall. "This will be painful, but we'll give you something to make sure you don't remember a thing," he said. He was right about the pain, but I certainly do remember it. Ouch!
Déjà Vu — Jul 7, 2015
Hello again,
Sorry to be so uncommunicative since Tom wrote last but it truly has been 'A waiting game'. A lot of waiting. Basically we waited 3 days after the pleurodesis for things to settle down, then they put him back on tube food Friday night. He had flunked a similar fat challenge the Friday before in a mere 2 hours, but last weekend the serous fluid draining out of his left chest tube remained clear, like Chardonnay. Yay-so far so good!
We had front row seats for the July 4 fireworks and a little picnic as fireworks went off for 3 hours all over Portland. That was so different than Camp Sherman where they are totally banned in summer. Well, actually his great night shift nurse Carissa and I ate all the snacks I brought up and Tom had a few tiny bites of things. He is ok to eat soft foods but just has not had his appetite come back with all the other stuff going on. I took Tom to the two outdoor decks with pretty trees, fountains and sculptures and he enjoyed the fresh warm air. If you want an attending doctor to show up, we have learned to just leave the room!
We worried yesterday the fluid was starting to change to chyle again and Dr Schipper confirmed it in late afternoon: Tom has a 'low volume chyle leak' that took about 72 hours to manifest this time. Arrrrgh!! So disappointing :( So, now what? Well, two more expert surgeons are being consulted who are the most experienced in this field because Tom's two regular teams of doctors cannot figure out where he is still leaking from. They were supposed to come by this morning. So we waited... They didn't appear but a resident just came by at 7:30pm and said one of them, Dr Martindale, knows about Tom's case and is thinking hard about it, and we'll see him tomorrow...
Meanwhile Tom had a little 2:30 am trip into the bowels of the hospital last night to get another CAT scan. It showed some fluid in his pleural space but nothing in the abdomen.
This evening Dr Hunter came by with his whole new team of med students and fellows (they 'age up' on July 1) and cheered us up. He told us they still have a few more tricks up their sleeves, and that it WILL eventually heal, but it will take more time. There is always "just waiting and it will eventually heal" but the powers that be, when they all finally confer, will offer a few more alternatives that could be more invasive but would speed things along. Stay tuned. Meanwhile we wait, walk miles around the 13th floor, enjoy our visitors (more on that in the next post) and appreciate the great nurses and other people in our new world.
So, the pleurodesis a week ago today may have helped some but it did not do the whole job. Sigh. That was really hard for us to realize, Tom particularly. To be frank, he is a little depressed by this discouraging news, but he sends his greetings and gratitude for your continued support.
Hello again,
Sorry to be so uncommunicative since Tom wrote last but it truly has been 'A waiting game'. A lot of waiting. Basically we waited 3 days after the pleurodesis for things to settle down, then they put him back on tube food Friday night. He had flunked a similar fat challenge the Friday before in a mere 2 hours, but last weekend the serous fluid draining out of his left chest tube remained clear, like Chardonnay. Yay-so far so good!
We had front row seats for the July 4 fireworks and a little picnic as fireworks went off for 3 hours all over Portland. That was so different than Camp Sherman where they are totally banned in summer. Well, actually his great night shift nurse Carissa and I ate all the snacks I brought up and Tom had a few tiny bites of things. He is ok to eat soft foods but just has not had his appetite come back with all the other stuff going on. I took Tom to the two outdoor decks with pretty trees, fountains and sculptures and he enjoyed the fresh warm air. If you want an attending doctor to show up, we have learned to just leave the room!
We worried yesterday the fluid was starting to change to chyle again and Dr Schipper confirmed it in late afternoon: Tom has a 'low volume chyle leak' that took about 72 hours to manifest this time. Arrrrgh!! So disappointing :( So, now what? Well, two more expert surgeons are being consulted who are the most experienced in this field because Tom's two regular teams of doctors cannot figure out where he is still leaking from. They were supposed to come by this morning. So we waited... They didn't appear but a resident just came by at 7:30pm and said one of them, Dr Martindale, knows about Tom's case and is thinking hard about it, and we'll see him tomorrow...
Meanwhile Tom had a little 2:30 am trip into the bowels of the hospital last night to get another CAT scan. It showed some fluid in his pleural space but nothing in the abdomen.
This evening Dr Hunter came by with his whole new team of med students and fellows (they 'age up' on July 1) and cheered us up. He told us they still have a few more tricks up their sleeves, and that it WILL eventually heal, but it will take more time. There is always "just waiting and it will eventually heal" but the powers that be, when they all finally confer, will offer a few more alternatives that could be more invasive but would speed things along. Stay tuned. Meanwhile we wait, walk miles around the 13th floor, enjoy our visitors (more on that in the next post) and appreciate the great nurses and other people in our new world.
So, the pleurodesis a week ago today may have helped some but it did not do the whole job. Sigh. That was really hard for us to realize, Tom particularly. To be frank, he is a little depressed by this discouraging news, but he sends his greetings and gratitude for your continued support.
Here We Go Again — Jul 11, 2015
by Madeleine
The day after the last post, after all of Tom's doctors had conferred some more, Dr Mithran Sukumar paid us a visit. He is the senior thoracic surgeon here, but spends most of his time at the VA hospital next door. His bedside manner is wonderfully gentle and thoughtful. In his quiet voice he told Tom he recommended a second chemical pleurodesis, since the first one slowed the chyle leak down but did not seal it completely. He said think it over for a day-- you can even go home for a few days (with tubes and drain in tow...) but tempting as that was, it would just be a tease so Tom said let's do it ASAP. Once we go home, we do not want to come back again!
They took him off of tube food and back on the TPN (nutrition into his veins through the picc line) to give his guts time to 'dry out' again and clear them of fats (that return as chyle). Thursday morning they found a room for the 2 hour procedure in the recovery unit of the Interventional Radiology dept. Tom has been walking at least a mile a day around the 13th floor, so kept up with his new tradition of walking to procedures and walked to this one too. This time a transport person followed him with the bed he would return in.
Tom had six women on his team: anesthesiologist, nurse, fellow, PA, and 2 med students (observing). Since unfortunately he felt a lot of pain the last time and remembered it too, this time they sedated him more with the good stuff and he hardly remembers it. Yay! His recovery was faster and he did 7 laps straight by yesterday afternoon, 13 total. (11 laps around the floor = 1 mile ) Now we wait a few days for the surfaces of his lung and chest wall to stick together more before the next fat challenge. That will start sometime tomorrow. Since the last challenge took 72 hours to appear, who knows what will happen this time. Will it be gone? Will it just be even slower? How long will we have to wait to be sure? The doctors tell us we're nearing uncharted territory, as these are not that common and the lymph system is wily, but they assured Tom they can fix it. There are stories of people having to do 3 pleurodeses, and as a last resort, another surgery... Tom has a new aquatic visualization that I am confident will help this one stick! I'll let him post it himself.
Meanwhile, yesterday some really good news. Tom's daughter Brooke flew here from Truckee, CA and is staying for 2 days. Tom is delighted to have her of course, and she and I have been having fun playing with our Apple Watches, both gifts from dear Tom.
by Madeleine
The day after the last post, after all of Tom's doctors had conferred some more, Dr Mithran Sukumar paid us a visit. He is the senior thoracic surgeon here, but spends most of his time at the VA hospital next door. His bedside manner is wonderfully gentle and thoughtful. In his quiet voice he told Tom he recommended a second chemical pleurodesis, since the first one slowed the chyle leak down but did not seal it completely. He said think it over for a day-- you can even go home for a few days (with tubes and drain in tow...) but tempting as that was, it would just be a tease so Tom said let's do it ASAP. Once we go home, we do not want to come back again!
They took him off of tube food and back on the TPN (nutrition into his veins through the picc line) to give his guts time to 'dry out' again and clear them of fats (that return as chyle). Thursday morning they found a room for the 2 hour procedure in the recovery unit of the Interventional Radiology dept. Tom has been walking at least a mile a day around the 13th floor, so kept up with his new tradition of walking to procedures and walked to this one too. This time a transport person followed him with the bed he would return in.
Tom had six women on his team: anesthesiologist, nurse, fellow, PA, and 2 med students (observing). Since unfortunately he felt a lot of pain the last time and remembered it too, this time they sedated him more with the good stuff and he hardly remembers it. Yay! His recovery was faster and he did 7 laps straight by yesterday afternoon, 13 total. (11 laps around the floor = 1 mile ) Now we wait a few days for the surfaces of his lung and chest wall to stick together more before the next fat challenge. That will start sometime tomorrow. Since the last challenge took 72 hours to appear, who knows what will happen this time. Will it be gone? Will it just be even slower? How long will we have to wait to be sure? The doctors tell us we're nearing uncharted territory, as these are not that common and the lymph system is wily, but they assured Tom they can fix it. There are stories of people having to do 3 pleurodeses, and as a last resort, another surgery... Tom has a new aquatic visualization that I am confident will help this one stick! I'll let him post it himself.
Meanwhile, yesterday some really good news. Tom's daughter Brooke flew here from Truckee, CA and is staying for 2 days. Tom is delighted to have her of course, and she and I have been having fun playing with our Apple Watches, both gifts from dear Tom.
Thank you visitors!— July 11, 2015
by Madeleine
Thank you dear friends for making the trek up here to visit us! Thank you for prayer flags, flowers, excursions, farmer's market delights, cookies, sage advice and conversations. There have been more but we can only post 5 photos at a time. Namasté.
by Madeleine
Thank you dear friends for making the trek up here to visit us! Thank you for prayer flags, flowers, excursions, farmer's market delights, cookies, sage advice and conversations. There have been more but we can only post 5 photos at a time. Namasté.
Visualizing — Jul 11, 2015
The way to stop the chyle leaks that are causing me so much trouble Is a procedure called pleurodesis. This causes irritation of the chest wall and in the healing process that wall fuses with the lung itself. This in turn blocks off the ducts that are leaking chyle into the pleural space. The trick is to seal things off completely. The first pleurodesis was not successful so we did it again and are awaiting the results in the days ahead.
The healing visualization that recently popped into my head is only slightly weirder than the piranhas and dolphins I used during chemotherapy. This time my aquatic helpers are squid. They swiri around in a dense school in my pleural cavity. As they do, their tentacles magically detach and adhere to the chest wall until it is completely lined with tiny suction cups. Then, when I inhale deeply, my lung expands out to the chest wall and all those suction cups just suck it in tight, right where we want it to be. Viola! lung and chestwall are fused. It's too weird, right?
The way to stop the chyle leaks that are causing me so much trouble Is a procedure called pleurodesis. This causes irritation of the chest wall and in the healing process that wall fuses with the lung itself. This in turn blocks off the ducts that are leaking chyle into the pleural space. The trick is to seal things off completely. The first pleurodesis was not successful so we did it again and are awaiting the results in the days ahead.
The healing visualization that recently popped into my head is only slightly weirder than the piranhas and dolphins I used during chemotherapy. This time my aquatic helpers are squid. They swiri around in a dense school in my pleural cavity. As they do, their tentacles magically detach and adhere to the chest wall until it is completely lined with tiny suction cups. Then, when I inhale deeply, my lung expands out to the chest wall and all those suction cups just suck it in tight, right where we want it to be. Viola! lung and chestwall are fused. It's too weird, right?
Squid Rule — Jul 16, 2015
My little tentacled buddies must have done their jobs right this time. It's been a week since the second pleurodesis. I have had my up and down days but the trend has been steadily decreasing drainage of the pleural fluid. Better yet is no reappearance of chyle, the real villain in my equation. I'm off of pain meds completely but am struggling somewhat with withdrawal.
This morning the chest team came by my room to see how I'm doing and are so pleased with my progress that they pulled out the drainage tube from the left pleural cavity. Wow, no more drains; that feels great! Dr. Tieu said they would be monitoring me carefully today prior to an expected release tomorrow!!!l I am not counting chickens yet, but the prospect of getting out of here makes me feel so good.
My little tentacled buddies must have done their jobs right this time. It's been a week since the second pleurodesis. I have had my up and down days but the trend has been steadily decreasing drainage of the pleural fluid. Better yet is no reappearance of chyle, the real villain in my equation. I'm off of pain meds completely but am struggling somewhat with withdrawal.
This morning the chest team came by my room to see how I'm doing and are so pleased with my progress that they pulled out the drainage tube from the left pleural cavity. Wow, no more drains; that feels great! Dr. Tieu said they would be monitoring me carefully today prior to an expected release tomorrow!!!l I am not counting chickens yet, but the prospect of getting out of here makes me feel so good.
