2018 Blog Posts
Six Months! — Feb 17, 2018 Last Tuesday I had my 3 month surveillance CT scan. To paraphrase Dr. Hunter, "...There is no cancer evident and it has been 20 months since your last recurrence. Therefore, I think we can wait a full six months before your next scan. ” Great news on both accounts! Even though the CT shows issues with my lungs and digestive tract attributable to the original surgeries, the gorilla in the room, cancer, is absent. So, there is nothing life threatening to report and we can make plans for the next six months.
Certainly, along with the cancer complications, there are the usual myriad health issues that old men must deal with (heart, prostate, muscle & joint pain, etc.), but over-all I'm feeling pretty fit. Even though I lament the fact that my strength and lung capacity are not what they would have been if I hadn't been ill with cancer, I'm still swimming and hiking at a fairly vigorous level. I know I'm in better shape than most guys my age regardless of whether or not they have had cancer; and that gives me some consolation.
Looking forward I have a lot more optimism about the years ahead. Three years ago, even though I could not believe that my death might be imminent, I know the odds favored that outcome. Today I feel extreme gratitude for the fact that I can now plan for a lengthy future. Wow! What a journey it has been. I know there are still challenges to overcome, but it seems to me that I may be opening a new chapter in the saga of my life. With Madeleine by my side, we go onward to more new and fulfilling experiences.
Celebrate life!!!
Certainly, along with the cancer complications, there are the usual myriad health issues that old men must deal with (heart, prostate, muscle & joint pain, etc.), but over-all I'm feeling pretty fit. Even though I lament the fact that my strength and lung capacity are not what they would have been if I hadn't been ill with cancer, I'm still swimming and hiking at a fairly vigorous level. I know I'm in better shape than most guys my age regardless of whether or not they have had cancer; and that gives me some consolation.
Looking forward I have a lot more optimism about the years ahead. Three years ago, even though I could not believe that my death might be imminent, I know the odds favored that outcome. Today I feel extreme gratitude for the fact that I can now plan for a lengthy future. Wow! What a journey it has been. I know there are still challenges to overcome, but it seems to me that I may be opening a new chapter in the saga of my life. With Madeleine by my side, we go onward to more new and fulfilling experiences.
Celebrate life!!!
Another Voyage — May 13, 2018
Care to go on another journey with me? It’s not like the last one, which was climbing Mt. Everest. When I try to analogize this one all I can come up with is sailing around the world. It is long and arduous, but not nearly as dramatic as the last. In fact, I have been sorely tempted to stay mum, but so many of you have followed me so far already, that it would not be fair to you.
Just when I think I am leaving cancer behind me, another disease looms. It is called NTM lung disease. It is a tough one to get rid of and I am just starting down that road.
NTM stands for Non Tubercular Mycobacteria and it turns out I have a lot of them living in my lungs. Why? They are very common in everyone’s everyday environment, but due to cancer surgery and all the complications I have experienced, my lungs have become a particularly fertile environment for these bugs. They are there and I have to get rid of them or else my lungs will slowly deteriorate.
It’s weird, because l am feeling pretty good. The symptoms I have are a chronic cough and slow weight loss, which, though vexing, have not limited me at all so far. I’m trying to exercise regularly to stay fit and my swimming workouts in particular have been quite consistent. I’m not as fit as I would be if I had not had cancer, but…. duh. I’m in good shape for a 76 year old guy, fitter than most men my age, so how could I have lung disease?
Well, what is… is. I’m embarking on another voyage of recovery and you can come along if you want.
Tomorrow I start treatment. The bugs that they are going after are pseudomonas, mycobacterium avium and mycobacterium abscessus. It’s going to take at least a year the doctors tell me, because these bacteria are so tough. For eight weeks I have to have intravenous antibiotic treatment twice a week. Bummer, I have to stay close to home… no early season backpacking this year. There are three other antibiotics that I’ll be taking orally for at least a year.
So… I’m sorry (not really) that I won't be able to show you dramatic pictures of me coming out of surgery with multiple tubes sticking out of me. Or walking unsteadily down a long hospital corridor with my IV rack in tow. This disease is insidious and not so dramatically life-threatening. I'll try to keep you informed, though, maybe once a month, how I'm doing.
I’m trying my best not to be discouraged by this latest turn of events. Life post cancer is so good! I’ve said this before. Having stared death in the face, waking up each morning, looking at Mt. Jefferson, walking along the river, kissing my wife… there are just so many things to feel lucky about and be glad to be alive for. So, I’m just going to tough it out and do my best to enjoy everything I have while I take on this latest challenge.
Sunday evening: We went for a walk along our beautiful river, bursting with spring life. I hugged a big ponderosa to gather in its strength, just like I did three years ago, when, a week later, I would be having my cancer removed.
Care to go on another journey with me? It’s not like the last one, which was climbing Mt. Everest. When I try to analogize this one all I can come up with is sailing around the world. It is long and arduous, but not nearly as dramatic as the last. In fact, I have been sorely tempted to stay mum, but so many of you have followed me so far already, that it would not be fair to you.
Just when I think I am leaving cancer behind me, another disease looms. It is called NTM lung disease. It is a tough one to get rid of and I am just starting down that road.
NTM stands for Non Tubercular Mycobacteria and it turns out I have a lot of them living in my lungs. Why? They are very common in everyone’s everyday environment, but due to cancer surgery and all the complications I have experienced, my lungs have become a particularly fertile environment for these bugs. They are there and I have to get rid of them or else my lungs will slowly deteriorate.
It’s weird, because l am feeling pretty good. The symptoms I have are a chronic cough and slow weight loss, which, though vexing, have not limited me at all so far. I’m trying to exercise regularly to stay fit and my swimming workouts in particular have been quite consistent. I’m not as fit as I would be if I had not had cancer, but…. duh. I’m in good shape for a 76 year old guy, fitter than most men my age, so how could I have lung disease?
Well, what is… is. I’m embarking on another voyage of recovery and you can come along if you want.
Tomorrow I start treatment. The bugs that they are going after are pseudomonas, mycobacterium avium and mycobacterium abscessus. It’s going to take at least a year the doctors tell me, because these bacteria are so tough. For eight weeks I have to have intravenous antibiotic treatment twice a week. Bummer, I have to stay close to home… no early season backpacking this year. There are three other antibiotics that I’ll be taking orally for at least a year.
So… I’m sorry (not really) that I won't be able to show you dramatic pictures of me coming out of surgery with multiple tubes sticking out of me. Or walking unsteadily down a long hospital corridor with my IV rack in tow. This disease is insidious and not so dramatically life-threatening. I'll try to keep you informed, though, maybe once a month, how I'm doing.
I’m trying my best not to be discouraged by this latest turn of events. Life post cancer is so good! I’ve said this before. Having stared death in the face, waking up each morning, looking at Mt. Jefferson, walking along the river, kissing my wife… there are just so many things to feel lucky about and be glad to be alive for. So, I’m just going to tough it out and do my best to enjoy everything I have while I take on this latest challenge.
Sunday evening: We went for a walk along our beautiful river, bursting with spring life. I hugged a big ponderosa to gather in its strength, just like I did three years ago, when, a week later, I would be having my cancer removed.
Tough Climbing Ahead — Sep 19, 2018
Well, are you ready to go on another expedition with us? We don’t have a map or know where the route is leading... only that there’s a rigorous climb ahead. I know, I know, I may sound a bit flip with the latest news, but I’m trying my best to take recent developments with aplomb.
Last week Dr. Hunter informed us that a nodule they have been monitoring in my lung has grown significantly. It might possibly not be cancer, but his immediate reaction, when pressed, was, “I think chances are probably 60-40 that it is indeed a recurrence of cancer.” And I suspect he was most likely being generous with this percentage.
Sooo, our life, which has been complicated by NTM lung disease, has become doubly so due to the appearance of an even more dangerous interloper in my lungs. I thought this post was going to be a simple narrative about what’s been happening since the last one… dealing with a new disease and what all that entails. Oops… we’re suddenly off the rails heading in an entirely new direction.
Let me pause to say that, right now, in the moment, I feel pretty good. The symptoms presented by the NTM lung disease are very manageable and I have had no discernible negative side effects from all the antibiotics I must take. So life has been percolating right along. I get frustrated at how much aerobic capacity and muscle mass I have lost, but overall, it doesn’t detract a lot from my quality of life. I worry about having lost so much weight, but I still feel pretty good.
This summer we did ten days of backpacking in the Sierra Nevada and Cascades. Though I was discouraged at how slow I have become, I was still able to carry a backpack on a seven day trip at 10,000-12,000 feet. It was great to get into the backcountry wilderness that we love! That son Hayden’s family was able to hike along with us for part of the time was a wonderful, serendipitous bonus.
Okay, I’m starting to ramble. Here’s what’s going on right now:
Monday next we go up to Portland where I’m scheduled for a PET scan, then a conference with Dr. Schipper. (Actually, I now have two lung doctors, one to deal with NTM and the other to deal with cancer. Wow.) Dr. Schipper is the surgeon who, along with Dr. Hunter did the original esophagectomy in 2015. Then in 2016 he performed the “wedge resection” to remove the subsequent recurrence of cancer from my lung. So we have a rich history, since he knows my insides better than anyone. Next week, once he has a chance to analyze the PET scan, we will discuss what my options are going forward. And, since I don’t know anything further, that’s the subject for the next post. “What’s Tom going to do now?” Stay tuned. I should be getting back to you late next week when we know more.
Well, are you ready to go on another expedition with us? We don’t have a map or know where the route is leading... only that there’s a rigorous climb ahead. I know, I know, I may sound a bit flip with the latest news, but I’m trying my best to take recent developments with aplomb.
Last week Dr. Hunter informed us that a nodule they have been monitoring in my lung has grown significantly. It might possibly not be cancer, but his immediate reaction, when pressed, was, “I think chances are probably 60-40 that it is indeed a recurrence of cancer.” And I suspect he was most likely being generous with this percentage.
Sooo, our life, which has been complicated by NTM lung disease, has become doubly so due to the appearance of an even more dangerous interloper in my lungs. I thought this post was going to be a simple narrative about what’s been happening since the last one… dealing with a new disease and what all that entails. Oops… we’re suddenly off the rails heading in an entirely new direction.
Let me pause to say that, right now, in the moment, I feel pretty good. The symptoms presented by the NTM lung disease are very manageable and I have had no discernible negative side effects from all the antibiotics I must take. So life has been percolating right along. I get frustrated at how much aerobic capacity and muscle mass I have lost, but overall, it doesn’t detract a lot from my quality of life. I worry about having lost so much weight, but I still feel pretty good.
This summer we did ten days of backpacking in the Sierra Nevada and Cascades. Though I was discouraged at how slow I have become, I was still able to carry a backpack on a seven day trip at 10,000-12,000 feet. It was great to get into the backcountry wilderness that we love! That son Hayden’s family was able to hike along with us for part of the time was a wonderful, serendipitous bonus.
Okay, I’m starting to ramble. Here’s what’s going on right now:
Monday next we go up to Portland where I’m scheduled for a PET scan, then a conference with Dr. Schipper. (Actually, I now have two lung doctors, one to deal with NTM and the other to deal with cancer. Wow.) Dr. Schipper is the surgeon who, along with Dr. Hunter did the original esophagectomy in 2015. Then in 2016 he performed the “wedge resection” to remove the subsequent recurrence of cancer from my lung. So we have a rich history, since he knows my insides better than anyone. Next week, once he has a chance to analyze the PET scan, we will discuss what my options are going forward. And, since I don’t know anything further, that’s the subject for the next post. “What’s Tom going to do now?” Stay tuned. I should be getting back to you late next week when we know more.
The Next Steps — Sep 26, 2018
My news today is not good, but it is not dire. It's murky.
The PET scan I had yesterday morning lit up the suspicious nodules in my lungs. That means they are inflammatory… and very possibly cancerous. However, I have this other disease going on in my lungs which is a mycobacterial infection which also can show up as inflammatory. So… we know there is something going on, but it is not definitively cancer. It’s more likely to be cancer, but in order to treat it, the oncologists need to know for sure what they are dealing with. We know more than we did from the original CT, but there are still questions that need to be answered.
We had very productive and frank discussions yesterday afternoon with Justin Watson, a personable 7th year thoracic surgeon Fellow, and then Dr. Schipper, the thoracic surgeon who has seen me through this whole process from day one (5/22/15). His read on the situation: Unless I want to just do nothing and let the possible cancer run it’s inevitable course, we need to get a tissue sample; that is the only way to move forward with treatment.
What does this entail? Well, at first Dr Hunter thought they could do a needle biopsy, but the cardiovascular interventional radiologist who would do the procedure demurred due to the fact that the mass (nodule, whatever you call it) is too close to my heart. Sooo… surgery is in order. Dr. Schipper would perform another “wedge resection”, taking out the biggest mass completely in order to find out if it is a tumor or simply a large inflammatory nodule. Most likely he can do it using VATS again (video assisted thoracic surgery, as opposed to open). Again, they think it’s cancer, but they need to be absolutely certain. This surgery would mean cutting out about 5% of my left lung, about what they did with the first recurrence of cancer over two years ago on 6/9/16. That time I was in the hospital for four days.
If there is anything positive about this it’s the fact that the 3 nodules are growing slowly, so Dr. Schipper’s not feeling a lot of urgency to getting it out before going forward. He thinks that we could wait a few months before doing the surgery. We want to have some fun this fall, starting with our favorite Sun Valley Jazz festival! Right now we’re thinking go in for surgery sometime in November… after the weather starts to suck.
As for me, I’ve been on an emotional roller coaster lately. Sometimes I Iove life; sometimes I get discouraged about having to fight disease again. Being up on “Pill Hill” (OHSU hospitals and medical school) was particularly discouraging to me. I think I just have a visceral emotional reaction to being up there where I have spent way too many past days incarcerated.
Mad, as usual, has been a rock, at my side all the time, offering me encouragement when I need it, giving me space to be in my own head when I need that. My most emotional moments come when I think of all the hardship she has to go through in supporting me.
My news today is not good, but it is not dire. It's murky.
The PET scan I had yesterday morning lit up the suspicious nodules in my lungs. That means they are inflammatory… and very possibly cancerous. However, I have this other disease going on in my lungs which is a mycobacterial infection which also can show up as inflammatory. So… we know there is something going on, but it is not definitively cancer. It’s more likely to be cancer, but in order to treat it, the oncologists need to know for sure what they are dealing with. We know more than we did from the original CT, but there are still questions that need to be answered.
We had very productive and frank discussions yesterday afternoon with Justin Watson, a personable 7th year thoracic surgeon Fellow, and then Dr. Schipper, the thoracic surgeon who has seen me through this whole process from day one (5/22/15). His read on the situation: Unless I want to just do nothing and let the possible cancer run it’s inevitable course, we need to get a tissue sample; that is the only way to move forward with treatment.
What does this entail? Well, at first Dr Hunter thought they could do a needle biopsy, but the cardiovascular interventional radiologist who would do the procedure demurred due to the fact that the mass (nodule, whatever you call it) is too close to my heart. Sooo… surgery is in order. Dr. Schipper would perform another “wedge resection”, taking out the biggest mass completely in order to find out if it is a tumor or simply a large inflammatory nodule. Most likely he can do it using VATS again (video assisted thoracic surgery, as opposed to open). Again, they think it’s cancer, but they need to be absolutely certain. This surgery would mean cutting out about 5% of my left lung, about what they did with the first recurrence of cancer over two years ago on 6/9/16. That time I was in the hospital for four days.
If there is anything positive about this it’s the fact that the 3 nodules are growing slowly, so Dr. Schipper’s not feeling a lot of urgency to getting it out before going forward. He thinks that we could wait a few months before doing the surgery. We want to have some fun this fall, starting with our favorite Sun Valley Jazz festival! Right now we’re thinking go in for surgery sometime in November… after the weather starts to suck.
As for me, I’ve been on an emotional roller coaster lately. Sometimes I Iove life; sometimes I get discouraged about having to fight disease again. Being up on “Pill Hill” (OHSU hospitals and medical school) was particularly discouraging to me. I think I just have a visceral emotional reaction to being up there where I have spent way too many past days incarcerated.
Mad, as usual, has been a rock, at my side all the time, offering me encouragement when I need it, giving me space to be in my own head when I need that. My most emotional moments come when I think of all the hardship she has to go through in supporting me.
Leaving the foothills for the mountains — Nov 3, 2018
Brace yourselves; you’re going to be hearing more from me in the near future… because a lot’s going to be happening. So many of you have expressed so often that you appreciate being kept in the loop of my health travails that I’m inclined to feed you more information rather than less. So tune me out if this is getting old for you. Otherwise, keep listening as I prattle on.
First of all, I feel good. I’m in no pain whatsoever. I am enjoying each day. My mental outlook is positive; I can’t say I am happy about what’s in store for me, but I’m facing it with confidence. My swim workouts, this week in particular, have been strong; in spite of everything that is going on in my lungs I’m staying in a pretty good state of fitness and not backsliding. It does take me a day to recover from strenuous exercise, but I’m sure that is more a consequence of old age than disease.
The mycobacterial infection in my lungs has dropped in importance relative to the possible recurrence of cancer, but is still a part of my everyday reality. We went up to Portland last week to see Dr. Winthrop and he is guardedly optimistic about what he’s seeing. CT scan is inconclusive, but does show some areas of improvement. Sputum samples have shown negative for bad mycobacteria. “Why do I have to keep taking all these antibiotics if the samples are negative?” I ask. He answers: “Oh, they are still there, just not in the profusion that they were before.” I still have to take three antibiotics for the next 12 months at least. Luckily for me, the antibiotic regime has shown none of the negative side effects that are possible.
Okay. What’s going on with the cancer? There is not a lot more to be said until we have more data. The first step is to get a sample of tissue from the biggest of the suspicious nodules, in my left lung. To that end, I go in for surgery on November 13th. Similar to my first reoccurrence in June of 2016, Dr Schipper (the same thoracic surgeon) will remove a small wedge of lung where that growth lives. Hopefully this will also be done by VATS (Google it). Once they have the sample, the pathology report will enable oncologists to figure out what it is and what needs to be done. I’m sure I will have a lot more to say about that later this month. And expect to hear from me while I am in the hospital, too. Hopefully, I will only be in there for several days, but we will probably be staying up in Portland for most of the week.
As for the fun I promised in the last posting, Mad and I had a great trip to Sun Valley for the jazz festival. We spent five days dancing our feet off to fantastic live music. This has been an annual trip for us and we have such a good time! We love the music, the incredible musicians and fellow dancers. Ballroom and swing dancing is something we love doing together. All couples should have things they love to do together, right?
The drive over was nice, too. The route we usually take was out, because there is no place to charge my “cheating death” car, a Tesla X, between Camp Sherman and Boise. So we had to take a slightly longer route, which pushed the range of our car, but was possible. We arrived at the Baker City supercharger with about 40 miles of range (of 290) left! That was a bit of a sweat, but once we got onto main routes there were charging options available which did not push our range to the max. Returning we drove the same route, but without anxiety. The scenery of eastern Oregon is beautiful, especially with all the deciduous shrubs, aspen and larch turning golden colors. Idaho? Well I can’t say much for that segment of the trip, except, wow, is the speed limit really 80? I never thought I’d ever see Mad cruising a freeway at 75!
Since returning from Idaho we have enjoyed just being at home. Mad has been busy with big projects in her beloved zen garden while I have been carrying firewood and puttering a bit. She has her “yard guys” that help her now and then. It just bugs me that we have to hire strapping young men to do the work that I once accomplished with ease. We've finally had some rain showers after 5 months of drought, and now we’re getting the yard ready for winter before we go to Portland. The mountains have a nice white dusting of snow already.
Brace yourselves; you’re going to be hearing more from me in the near future… because a lot’s going to be happening. So many of you have expressed so often that you appreciate being kept in the loop of my health travails that I’m inclined to feed you more information rather than less. So tune me out if this is getting old for you. Otherwise, keep listening as I prattle on.
First of all, I feel good. I’m in no pain whatsoever. I am enjoying each day. My mental outlook is positive; I can’t say I am happy about what’s in store for me, but I’m facing it with confidence. My swim workouts, this week in particular, have been strong; in spite of everything that is going on in my lungs I’m staying in a pretty good state of fitness and not backsliding. It does take me a day to recover from strenuous exercise, but I’m sure that is more a consequence of old age than disease.
The mycobacterial infection in my lungs has dropped in importance relative to the possible recurrence of cancer, but is still a part of my everyday reality. We went up to Portland last week to see Dr. Winthrop and he is guardedly optimistic about what he’s seeing. CT scan is inconclusive, but does show some areas of improvement. Sputum samples have shown negative for bad mycobacteria. “Why do I have to keep taking all these antibiotics if the samples are negative?” I ask. He answers: “Oh, they are still there, just not in the profusion that they were before.” I still have to take three antibiotics for the next 12 months at least. Luckily for me, the antibiotic regime has shown none of the negative side effects that are possible.
Okay. What’s going on with the cancer? There is not a lot more to be said until we have more data. The first step is to get a sample of tissue from the biggest of the suspicious nodules, in my left lung. To that end, I go in for surgery on November 13th. Similar to my first reoccurrence in June of 2016, Dr Schipper (the same thoracic surgeon) will remove a small wedge of lung where that growth lives. Hopefully this will also be done by VATS (Google it). Once they have the sample, the pathology report will enable oncologists to figure out what it is and what needs to be done. I’m sure I will have a lot more to say about that later this month. And expect to hear from me while I am in the hospital, too. Hopefully, I will only be in there for several days, but we will probably be staying up in Portland for most of the week.
As for the fun I promised in the last posting, Mad and I had a great trip to Sun Valley for the jazz festival. We spent five days dancing our feet off to fantastic live music. This has been an annual trip for us and we have such a good time! We love the music, the incredible musicians and fellow dancers. Ballroom and swing dancing is something we love doing together. All couples should have things they love to do together, right?
The drive over was nice, too. The route we usually take was out, because there is no place to charge my “cheating death” car, a Tesla X, between Camp Sherman and Boise. So we had to take a slightly longer route, which pushed the range of our car, but was possible. We arrived at the Baker City supercharger with about 40 miles of range (of 290) left! That was a bit of a sweat, but once we got onto main routes there were charging options available which did not push our range to the max. Returning we drove the same route, but without anxiety. The scenery of eastern Oregon is beautiful, especially with all the deciduous shrubs, aspen and larch turning golden colors. Idaho? Well I can’t say much for that segment of the trip, except, wow, is the speed limit really 80? I never thought I’d ever see Mad cruising a freeway at 75!
Since returning from Idaho we have enjoyed just being at home. Mad has been busy with big projects in her beloved zen garden while I have been carrying firewood and puttering a bit. She has her “yard guys” that help her now and then. It just bugs me that we have to hire strapping young men to do the work that I once accomplished with ease. We've finally had some rain showers after 5 months of drought, and now we’re getting the yard ready for winter before we go to Portland. The mountains have a nice white dusting of snow already.
the night before — Nov 12, 2018
Monday evening:
Okay, reality beckons. At the moment ensconced in our Portland hotel. Checking in to OHSU hospital for surgery tomorrow morning at 5:30 am! Damn... why so early? Never mind, we will be there.
Drove over the mountains yesterday. Today’s preoperative conference a bit anxiety producing. Gory details of wedge resection explained. Testing... EKG, blood, chest X-ray. Wow, it’s really happening! Surgery just the beginning of what may be a long and uncertain road ahead.
Spent a long, delightful, anxiety-reducing afternoon at the home of our friends Tom and Lindsey. Texts and emails of support coming in from all over the place. Thanks a lot. The caring energy you send our way is uplifting! (Upwelling of emotion brings tears to my eyes).
My mental state: daunted, but not afraid, curious about what eventual pathology results may mean and trying my best to stay in an optimistic mindset going forward.
Might be able to expound further tomorrow if preliminary results are available, but it will probably be from Madeleine if she’s able. If not, I will do my best to get back to you on Wednesday. Ciao, everyone, l love you all!
Monday evening:
Okay, reality beckons. At the moment ensconced in our Portland hotel. Checking in to OHSU hospital for surgery tomorrow morning at 5:30 am! Damn... why so early? Never mind, we will be there.
Drove over the mountains yesterday. Today’s preoperative conference a bit anxiety producing. Gory details of wedge resection explained. Testing... EKG, blood, chest X-ray. Wow, it’s really happening! Surgery just the beginning of what may be a long and uncertain road ahead.
Spent a long, delightful, anxiety-reducing afternoon at the home of our friends Tom and Lindsey. Texts and emails of support coming in from all over the place. Thanks a lot. The caring energy you send our way is uplifting! (Upwelling of emotion brings tears to my eyes).
My mental state: daunted, but not afraid, curious about what eventual pathology results may mean and trying my best to stay in an optimistic mindset going forward.
Might be able to expound further tomorrow if preliminary results are available, but it will probably be from Madeleine if she’s able. If not, I will do my best to get back to you on Wednesday. Ciao, everyone, l love you all!
Quick update on Tom — Nov 14, 2018
Journal entry by Madeleinde
Hi everyone,
Sorry for not posting sooner but yesterday was too long a day and today we've had a lot of visitors and things going on. The surgery went well. Dr Schipper took out a smaller nodule than the one originally planned, that couldn't be seen on the PET scan. That was good as it preserved more lung tissue. He only took out less than 1%. But, the frozen section they analyzed during surgery showed it was adenocarcinoma. That wasn't a big surprise but still not great news. So now we wait for the pathology report in a week and the more important mutational analysis in 2-3 weeks. We'll have a lot more to say about that in a later post.
The cardio PA pulled out his one chest tube already this morning! Those of you who are long term followers of the blog might remember that Tom endured 2 painful chest tubes for about 6 weeks during the chyle leak saga. So 24 hours was a piece of cake. Tom has walked and eaten well and is on track for speedy healing. Pepperoni pizza and ice cream and prune juice were on his menu today... Two of his former nurses from the cancer floor 2 floors up visited last night and brought food, one on her day off! Our chaplain friends also dropped by, dear Claude kept me company and even Dr Hunter dropped in on his way home from an international flight! So we feel loved and well cared for. Thank you all for your notes, calls and comments. We do read them even if we don't respond asap. I'm leaving right now to take the tram and hotel bike to yoga at the hotel with my local yoga teacher and friend since May'15. There is a chance they will discharge Tom tomorrow, eek! Stay tuned,
Madeleine
Journal entry by Madeleinde
Hi everyone,
Sorry for not posting sooner but yesterday was too long a day and today we've had a lot of visitors and things going on. The surgery went well. Dr Schipper took out a smaller nodule than the one originally planned, that couldn't be seen on the PET scan. That was good as it preserved more lung tissue. He only took out less than 1%. But, the frozen section they analyzed during surgery showed it was adenocarcinoma. That wasn't a big surprise but still not great news. So now we wait for the pathology report in a week and the more important mutational analysis in 2-3 weeks. We'll have a lot more to say about that in a later post.
The cardio PA pulled out his one chest tube already this morning! Those of you who are long term followers of the blog might remember that Tom endured 2 painful chest tubes for about 6 weeks during the chyle leak saga. So 24 hours was a piece of cake. Tom has walked and eaten well and is on track for speedy healing. Pepperoni pizza and ice cream and prune juice were on his menu today... Two of his former nurses from the cancer floor 2 floors up visited last night and brought food, one on her day off! Our chaplain friends also dropped by, dear Claude kept me company and even Dr Hunter dropped in on his way home from an international flight! So we feel loved and well cared for. Thank you all for your notes, calls and comments. We do read them even if we don't respond asap. I'm leaving right now to take the tram and hotel bike to yoga at the hotel with my local yoga teacher and friend since May'15. There is a chance they will discharge Tom tomorrow, eek! Stay tuned,
Madeleine
Kicked Out — Nov 16, 2018
Friday.
Oh joy, they kicked me out of the hospital yesterday! I am now at the hotel for a day or so, just to make sure no further health complications pop up before heading home tomorrow. I was able to walk down here from “pill hill” (what many in the know call the hospital complex). My discharge nurse was skeptical about my ambulatory ability, so made me do a few laps around the 11th floor before letting me go. It’s a short mile down here, a journey I have accomplished more times than I care to count, and I’m feeling pretty good, so I had no qualms about making it only two days post surgery.
I am writing while looking out our 5th floor window at a view of the Willamette River, filtered through tall cottonwoods. Ahh, beautiful nature! After a while my friend, Tom Schneiger is heading here and we’ll walk down river to a Thai restaurant for lunch. Can you tell that I am feeling pretty good? I am managing my pain with Tylenol, not narcotics, and that is a good thing too.
What about the cancer thing, you wonder? Well, the news is not so good as your can glean from Mad’s posting. There are a few tumors in my lungs, numerous enough that they cannot just cut them out like they did with the first recurrence. So, some type of chemotherapy is in order. It will take a few weeks for the mutational analysis to be done. Then the oncologists will have the information necessary to determine a treatment protocol going forward. There are many new cancer drugs which have proven to be effective for treating stage IV cancer, so our hope is that my cancer will respond to one of them.
My mental state: I’m not depressed nor discouraged, though it’s hard to be optimistic. I’m just waiting around, curious to find out what trail we are going to be sent along this time as we try to extend my life.
Friday.
Oh joy, they kicked me out of the hospital yesterday! I am now at the hotel for a day or so, just to make sure no further health complications pop up before heading home tomorrow. I was able to walk down here from “pill hill” (what many in the know call the hospital complex). My discharge nurse was skeptical about my ambulatory ability, so made me do a few laps around the 11th floor before letting me go. It’s a short mile down here, a journey I have accomplished more times than I care to count, and I’m feeling pretty good, so I had no qualms about making it only two days post surgery.
I am writing while looking out our 5th floor window at a view of the Willamette River, filtered through tall cottonwoods. Ahh, beautiful nature! After a while my friend, Tom Schneiger is heading here and we’ll walk down river to a Thai restaurant for lunch. Can you tell that I am feeling pretty good? I am managing my pain with Tylenol, not narcotics, and that is a good thing too.
What about the cancer thing, you wonder? Well, the news is not so good as your can glean from Mad’s posting. There are a few tumors in my lungs, numerous enough that they cannot just cut them out like they did with the first recurrence. So, some type of chemotherapy is in order. It will take a few weeks for the mutational analysis to be done. Then the oncologists will have the information necessary to determine a treatment protocol going forward. There are many new cancer drugs which have proven to be effective for treating stage IV cancer, so our hope is that my cancer will respond to one of them.
My mental state: I’m not depressed nor discouraged, though it’s hard to be optimistic. I’m just waiting around, curious to find out what trail we are going to be sent along this time as we try to extend my life.
one step up, two steps back — Nov 22, 2018
OHSU Hospital Early morning, Thursday
They just awakened me for X-ray and blood draw.
How arrogant of me to think that, just because I am relatively fit for my age, I could sail through biopsy surgery without a hitch. History shows that, if there is a complication that can occur due to a procedure, it’s going to happen to Tom. So here I am, a week after they released me the first time, back in the hospital. It is profoundly discouraging to me, especially today, Thanksgiving. In simple terms what is happening is leakage of air out of my lung through the site of my original chest tube into my body’s subcutaneous tissues. One medical term is subcutaneous crepitation. Usually, if this occurs, it is right after surgery. With me it did not occur until several days after they had already released me, time to get all the way back home feeling smug about weathering the surgery so successfully.
They let me out of the hospital on Thursday and we headed over the mountains to Camp Sherman on Saturday. Saturday night and Sunday symptoms developed which sent me to my doctor on Monday. She conferred with the doctors in Portland, who said, “We need him back over here!”
Therefore, after a mad scramble to repack everything for who knows how long a stay, Tuesday night we returned to Portland. Wednesday, directly upon observing the extent of the swelling in the left side of my body, the 4th year surgical resident who examined me said, “Sorry to tell you this, but we will have to readmit you to the hospital right away.” Bummer.
My mental state, to be completely truthful, is a bit brittle just now. As most of you know, I’m usually pretty good at maintaining a positive attitude through difficult times. And even though I know that this is just a bump in the road in the bigger picture of my cancer battle, returning here just plain sucks.
In spite of a beautiful sunrise behind Mt Hood out my window, writing this is making me cry, so I’ll stop now and wait until I have something happier to convey.
Afternoon: Well, they just put a tube into my chest cavity to drain the air out of the space between my lung and the chest wall. That’s for the small pneumothorax compressing my lung. This should also stop the air leaking out into subcutaneous spaces elsewhere. At least that’s how I understand it. They say it will take five to seven days to resolve. Can you believe I’m going to be here another week, that the complications of the operation take twice as long as the surgery stay itself? I will persevere, but not happily.
Mad is down at the hotel spa for some self care with our friend Sarah. Then she’s coming back up here to have Thanksgiving dinner with me. The hospital menu actually isn’t all that bad.
In spite of all the tribulations I’m experiencing, I still have a lot to be thankful for. For Mad and the rest of my family. For all of you who care. For good doctors. For life itself.
OHSU Hospital Early morning, Thursday
They just awakened me for X-ray and blood draw.
How arrogant of me to think that, just because I am relatively fit for my age, I could sail through biopsy surgery without a hitch. History shows that, if there is a complication that can occur due to a procedure, it’s going to happen to Tom. So here I am, a week after they released me the first time, back in the hospital. It is profoundly discouraging to me, especially today, Thanksgiving. In simple terms what is happening is leakage of air out of my lung through the site of my original chest tube into my body’s subcutaneous tissues. One medical term is subcutaneous crepitation. Usually, if this occurs, it is right after surgery. With me it did not occur until several days after they had already released me, time to get all the way back home feeling smug about weathering the surgery so successfully.
They let me out of the hospital on Thursday and we headed over the mountains to Camp Sherman on Saturday. Saturday night and Sunday symptoms developed which sent me to my doctor on Monday. She conferred with the doctors in Portland, who said, “We need him back over here!”
Therefore, after a mad scramble to repack everything for who knows how long a stay, Tuesday night we returned to Portland. Wednesday, directly upon observing the extent of the swelling in the left side of my body, the 4th year surgical resident who examined me said, “Sorry to tell you this, but we will have to readmit you to the hospital right away.” Bummer.
My mental state, to be completely truthful, is a bit brittle just now. As most of you know, I’m usually pretty good at maintaining a positive attitude through difficult times. And even though I know that this is just a bump in the road in the bigger picture of my cancer battle, returning here just plain sucks.
In spite of a beautiful sunrise behind Mt Hood out my window, writing this is making me cry, so I’ll stop now and wait until I have something happier to convey.
Afternoon: Well, they just put a tube into my chest cavity to drain the air out of the space between my lung and the chest wall. That’s for the small pneumothorax compressing my lung. This should also stop the air leaking out into subcutaneous spaces elsewhere. At least that’s how I understand it. They say it will take five to seven days to resolve. Can you believe I’m going to be here another week, that the complications of the operation take twice as long as the surgery stay itself? I will persevere, but not happily.
Mad is down at the hotel spa for some self care with our friend Sarah. Then she’s coming back up here to have Thanksgiving dinner with me. The hospital menu actually isn’t all that bad.
In spite of all the tribulations I’m experiencing, I still have a lot to be thankful for. For Mad and the rest of my family. For all of you who care. For good doctors. For life itself.
Quick Pic — Nov 25, 2018
I had to share this morning’s sunrise with you! Mad is down in the fog somewhere.
Doing pretty well. Attitude okay, all things considered. No pain. Bored. Don’t know when they’re letting me out; best guess is Tuesday.
Ta ta all.
I had to share this morning’s sunrise with you! Mad is down in the fog somewhere.
Doing pretty well. Attitude okay, all things considered. No pain. Bored. Don’t know when they’re letting me out; best guess is Tuesday.
Ta ta all.
Extraordinary — Nov 29, 2018
Wakened this morning at 4:45 for X-ray. Instead of going back to sleep my mind started motoring, reflecting on many things. This is going to be a bit disjointed. I expect a lot of interruptions today, so it may take me all day to finish.
Can you believe tomorrow I will have been in here ten days already? At first they said probably five to seven... The extraordinary view and the extraordinary nurses and medical team make it a lot easier to be here. Oh, the extraordinary stuff that’s been happening to me! I’m okay, though, feeling pretty good about things this morning. My condition improved markedly overnight and the X-ray was, in the words of the doctor who blew through here earlier, “perfect”. They speculate that the chest tube may come out today, which means I may get out of here tomorrow. “The team” will be by later this morning to give me definitive news. Fingers crossed, more on that later; I’m just rambling now.
Upon reflection I realize I’ve had an extraordinary life. Two extraordinary wives; two extraordinary offspring; three extraordinary siblings; extraordinary experiences through the years. The old age journey I’m on now is extraordinary, though in a decidedly different way. Everything about my illnesses has been extraordinary. That’s not a good thing, but certainly makes for an intriguing story, as all of you caring people are finding out.
I was born with extraordinary lungs. They have served me well, enabling me to pursue physical activities in extraordinary ways. Surfing, backpacking and swimming came easily to me largely because of my lungs. When, at 60, I started with single minded determination to compete again in swimming, extraordinary lung capacity enabled me to achieve at a high level. Now, when I complain to my swimming peers about my loss of lung capacity, I don’t get a whole lot of sympathy. They say “now you know how we feel all the time”.
Now my lungs house two diseases. One wants to relentlessly degrade them; the other simply wants to kill me. Someone recently told me that if I hadn’t had such great lungs to begin with I would not be here anymore. They are still not that bad and I am doggedly fighting both diseases to the best of my ability. I just keep taking the antibiotics to hold the mycobacteria at bay... and time will tell what I have to do to stave off the cancer.
Afternoon now. The thoracic team of 7 came in: 1 attending surgeon, a fellow, 4th year resident, PA's, NP's and students. Their decision is for me to stay on the tube one more night to be extra sure the air leak is sealed (because it’s me...) pull the tube tomorrow morning & let me go later in the day. We will stay overnight at the hotel and head home over the snowy pass on Saturday.
Wakened this morning at 4:45 for X-ray. Instead of going back to sleep my mind started motoring, reflecting on many things. This is going to be a bit disjointed. I expect a lot of interruptions today, so it may take me all day to finish.
Can you believe tomorrow I will have been in here ten days already? At first they said probably five to seven... The extraordinary view and the extraordinary nurses and medical team make it a lot easier to be here. Oh, the extraordinary stuff that’s been happening to me! I’m okay, though, feeling pretty good about things this morning. My condition improved markedly overnight and the X-ray was, in the words of the doctor who blew through here earlier, “perfect”. They speculate that the chest tube may come out today, which means I may get out of here tomorrow. “The team” will be by later this morning to give me definitive news. Fingers crossed, more on that later; I’m just rambling now.
Upon reflection I realize I’ve had an extraordinary life. Two extraordinary wives; two extraordinary offspring; three extraordinary siblings; extraordinary experiences through the years. The old age journey I’m on now is extraordinary, though in a decidedly different way. Everything about my illnesses has been extraordinary. That’s not a good thing, but certainly makes for an intriguing story, as all of you caring people are finding out.
I was born with extraordinary lungs. They have served me well, enabling me to pursue physical activities in extraordinary ways. Surfing, backpacking and swimming came easily to me largely because of my lungs. When, at 60, I started with single minded determination to compete again in swimming, extraordinary lung capacity enabled me to achieve at a high level. Now, when I complain to my swimming peers about my loss of lung capacity, I don’t get a whole lot of sympathy. They say “now you know how we feel all the time”.
Now my lungs house two diseases. One wants to relentlessly degrade them; the other simply wants to kill me. Someone recently told me that if I hadn’t had such great lungs to begin with I would not be here anymore. They are still not that bad and I am doggedly fighting both diseases to the best of my ability. I just keep taking the antibiotics to hold the mycobacteria at bay... and time will tell what I have to do to stave off the cancer.
Afternoon now. The thoracic team of 7 came in: 1 attending surgeon, a fellow, 4th year resident, PA's, NP's and students. Their decision is for me to stay on the tube one more night to be extra sure the air leak is sealed (because it’s me...) pull the tube tomorrow morning & let me go later in the day. We will stay overnight at the hotel and head home over the snowy pass on Saturday.
Grateful to be home — Dec 3, 2018 Monday
Monday: I went for two walks today. Mad dropped me off about a mile down the road this morning as she headed out for a longer hike. I’m starting off cautiously after a few weeks of enforced sloth. The mile was no problem, though, so tomorrow I can go farther. I can’t swim for another three weeks, so walking has to suffice for exercise. Overall, especially considering what’s been happening the last few weeks, I feel pretty good.
This afternoon late I went out for a short but brisk walk up the meadow in front of our house. Only a few clouds in a clear blue sky; Mt. Jefferson looms to the North as a shining white presence, which always grounds me in some way. To the West, Three Fingered Jack is wreathed in an ethereal band of clouds. To the South, Black Butte’s bulk rises, snow covering its upper slopes.
Can you tell I am glad to be home? I was released from the hospital on Friday. Saturday we chose not to go directly home because of terrible weather up on the mountain pass. We opted to go down to Eugene to visit our friend Doug Edison, before heading over the mountains yesterday. By Sunday morning the storm had moved eastward and the roads were clear, the weather fine.
So here we are… and I’m so grateful to be back in Camp Sherman, even though temperatures are dropping down into the teens at night. No snow on the ground yet, though we can see it on the heights above us. Mad is looking forward to some skiable snow out the door, while I’m just glad to be back in familiar surroundings.
Next week we have to go back to Portland for more medical appointments. It’s almost like commuting, but this is near the end of it for a while. I have a post op meeting with the thoracic team where they will pull the big stitch from my “wound”. We are working on getting oncology appointments to address what needs to be done to control my cancer. Hopefully the battery of molecular tests they are conducting to analyze my tumor will be finished and the way forward will be clear. I’ll let you know…
Monday: I went for two walks today. Mad dropped me off about a mile down the road this morning as she headed out for a longer hike. I’m starting off cautiously after a few weeks of enforced sloth. The mile was no problem, though, so tomorrow I can go farther. I can’t swim for another three weeks, so walking has to suffice for exercise. Overall, especially considering what’s been happening the last few weeks, I feel pretty good.
This afternoon late I went out for a short but brisk walk up the meadow in front of our house. Only a few clouds in a clear blue sky; Mt. Jefferson looms to the North as a shining white presence, which always grounds me in some way. To the West, Three Fingered Jack is wreathed in an ethereal band of clouds. To the South, Black Butte’s bulk rises, snow covering its upper slopes.
Can you tell I am glad to be home? I was released from the hospital on Friday. Saturday we chose not to go directly home because of terrible weather up on the mountain pass. We opted to go down to Eugene to visit our friend Doug Edison, before heading over the mountains yesterday. By Sunday morning the storm had moved eastward and the roads were clear, the weather fine.
So here we are… and I’m so grateful to be back in Camp Sherman, even though temperatures are dropping down into the teens at night. No snow on the ground yet, though we can see it on the heights above us. Mad is looking forward to some skiable snow out the door, while I’m just glad to be back in familiar surroundings.
Next week we have to go back to Portland for more medical appointments. It’s almost like commuting, but this is near the end of it for a while. I have a post op meeting with the thoracic team where they will pull the big stitch from my “wound”. We are working on getting oncology appointments to address what needs to be done to control my cancer. Hopefully the battery of molecular tests they are conducting to analyze my tumor will be finished and the way forward will be clear. I’ll let you know…
Welcome back Sun — Dec 21, 2018
Happy Solstice everyone. We are celebrating the return of the sun. Today the nadir… everyday hence the progression of ever longer days toward summer. In spite of this, Mad is wishing for copious snow so she can ski out the door. Precipitation presently is mainly rain with teaser dustings of snow.
Okay. You didn’t tune in for a weather report, did you? Here’s what’s been happening:
We spent the first part of last week in Portland for my postoperative visit and a conference with the oncologist. Thoracic gave me a clean bill of health, finally. When the slice in my side heals I’ll be good to go full speed again, swim, etc. Oncology is a bit murkier, as all the sophisticated genetic testing has not been finished yet.
Dr. Lopez, the oncologist, was fairly upbeat. “We cannot cure your cancer, but we have a lot of new tools that we can use to beat it back and extend your life.” He asked me to have a CT scan to ascertain the extent to which my cancer may have grown over the last three months. “If your cancer has grown significantly, we’ll put you on a standard chemotherapy regime right away; If not, we will wait and see for a few months.” There are so many new cancer treatments being developed that, once the testing is finished, there will be a clearer picture of what therapies may be possible for me in the future.
We waited anxiously for the CT results. Finally they came in on Monday… and the results look good. The cancer has not grown, and in fact, the radiology report says the biggest mass “has decreased in size” (Mad calculates a .9 mm x .3mm decrease. The other two each measured 1mm smaller too. Doesn’t sound like much but we’ll take it!) Therefore, we now have three months to mellow out and play some without having to worry constantly about medical issues. Not having to drive to Bend weekly in the winter is great too. One question we're pondering is, how far from western medicine do we feel comfortable traveling…?
Going forward, no news will be good news; hopefully, you won’t be hearing from us for quite some time. Well… maybe if something particularly good happens I might not be able to restrain myself from passing it along.
Happy Solstice everyone. We are celebrating the return of the sun. Today the nadir… everyday hence the progression of ever longer days toward summer. In spite of this, Mad is wishing for copious snow so she can ski out the door. Precipitation presently is mainly rain with teaser dustings of snow.
Okay. You didn’t tune in for a weather report, did you? Here’s what’s been happening:
We spent the first part of last week in Portland for my postoperative visit and a conference with the oncologist. Thoracic gave me a clean bill of health, finally. When the slice in my side heals I’ll be good to go full speed again, swim, etc. Oncology is a bit murkier, as all the sophisticated genetic testing has not been finished yet.
Dr. Lopez, the oncologist, was fairly upbeat. “We cannot cure your cancer, but we have a lot of new tools that we can use to beat it back and extend your life.” He asked me to have a CT scan to ascertain the extent to which my cancer may have grown over the last three months. “If your cancer has grown significantly, we’ll put you on a standard chemotherapy regime right away; If not, we will wait and see for a few months.” There are so many new cancer treatments being developed that, once the testing is finished, there will be a clearer picture of what therapies may be possible for me in the future.
We waited anxiously for the CT results. Finally they came in on Monday… and the results look good. The cancer has not grown, and in fact, the radiology report says the biggest mass “has decreased in size” (Mad calculates a .9 mm x .3mm decrease. The other two each measured 1mm smaller too. Doesn’t sound like much but we’ll take it!) Therefore, we now have three months to mellow out and play some without having to worry constantly about medical issues. Not having to drive to Bend weekly in the winter is great too. One question we're pondering is, how far from western medicine do we feel comfortable traveling…?
Going forward, no news will be good news; hopefully, you won’t be hearing from us for quite some time. Well… maybe if something particularly good happens I might not be able to restrain myself from passing it along.
