2019 Blog Posts
"Beyond Pleased!" Dec 14, 2019
Hey, everyone, it’s Friday the 13th and I feel so, so lucky!! ( written last night) On the way home from swim workout today I was grooving on a latin tune; it filled my head and made me so happy. When we arrived at the house, there was a white-headed woodpecker drilling down on the suet feeder in front. That bit of nature made me so happy. Then, when I opened the shades in the living room, there was the pure white pyramid of Mt. Jefferson in the distance, shining in the sun. That made me so happy. Aside from being tired from some hard swimming, I feel great!
Am I happier than usual? I don’t think so, but maybe the good news of the week is a reason to feel better about things. Yeah, brace yourselves, I may be around longer than anticipated.
When Dr. Lopez walked in to the exam room, his first comment was, “The scan looks great! Your tumors are shrinking!" It seems as if the previous day’s CT scan shows that the cancer in my lungs is diminishing, which, in his orbit is likely a rare occurrence. He summed up how he felt before he left, saying “I’m beyond pleased”.
In the radiologist’s report on results of the CT, the operative phrase in the “Impressions” section reads, “decreased size of multiple metastatic lesions”.
Dr. Schmidt, my Bend oncologist, when he heard the results wrote, “That’s awesome news, as I usually don’t see such a rapid response after such a short course of therapy. Long term prognosis and management is in the cards for you.”
Tarceva is the name of the drug (generic name: erlotinib) I have been taking for almost two months now. Both oncologists warned me that significant side effects were probable. I won’t go into them now. I have certainly been feeling them, but they are subtle and manageable. That pleases both doctors. Dr. Lopez maintains that, on a scale of one to ten, the severity of my side effects is a one.
I don’t know exactly how to react to this development, as there have been so many ups and downs for me. Of course, I am pleased that the trail to my metaphorical cliff may be a lot longer than I thought. So much has happened, though, over the last five years, that it is hard to be elated about it. I am certainly content with my lot.
Something giving me some perspective, some insight into my overall condition occurred the next day. We remained in Portland because I had a preoperative appointment relating to the ear surgery I am having next month. They want to make sure I prepare correctly for the surgery and, I realize now, analyze how well I may be able to tolerate the procedure.
We talked at length with the doctor about my attitude, condition, anesthesia, etc. She was young and very personable and we established an easy rapport. She assured me that, in her judgement, the operation should go well for me. Then, in a candid moment, she confessed that, upon reading my oh, so lengthy chart she had expected to come into the exam room and find a very different person than I. She had not expected to find, in a 77 year old man who had experienced multiple operations, long hospital stays, complications, recurrence of disease, and new disease, a person as fit and relatively happy as I am. I thought, “Oh, here I am talking about my swim workouts and dancing, while any doctor who looks at my chart would ascertain that I might have a hard time surviving surgery." Well, she said after talking to me, she understood why the doctor said I'm a good candidate. I have been through a lot, but I try, rather than looking back, to look forward, take what comes, and in the present circumstance, feel some added gratitude for life.
As usual, thanks for listening, caring and, I know, for being happy that I can convey good news to you today.
Hey, everyone, it’s Friday the 13th and I feel so, so lucky!! ( written last night) On the way home from swim workout today I was grooving on a latin tune; it filled my head and made me so happy. When we arrived at the house, there was a white-headed woodpecker drilling down on the suet feeder in front. That bit of nature made me so happy. Then, when I opened the shades in the living room, there was the pure white pyramid of Mt. Jefferson in the distance, shining in the sun. That made me so happy. Aside from being tired from some hard swimming, I feel great!
Am I happier than usual? I don’t think so, but maybe the good news of the week is a reason to feel better about things. Yeah, brace yourselves, I may be around longer than anticipated.
When Dr. Lopez walked in to the exam room, his first comment was, “The scan looks great! Your tumors are shrinking!" It seems as if the previous day’s CT scan shows that the cancer in my lungs is diminishing, which, in his orbit is likely a rare occurrence. He summed up how he felt before he left, saying “I’m beyond pleased”.
In the radiologist’s report on results of the CT, the operative phrase in the “Impressions” section reads, “decreased size of multiple metastatic lesions”.
Dr. Schmidt, my Bend oncologist, when he heard the results wrote, “That’s awesome news, as I usually don’t see such a rapid response after such a short course of therapy. Long term prognosis and management is in the cards for you.”
Tarceva is the name of the drug (generic name: erlotinib) I have been taking for almost two months now. Both oncologists warned me that significant side effects were probable. I won’t go into them now. I have certainly been feeling them, but they are subtle and manageable. That pleases both doctors. Dr. Lopez maintains that, on a scale of one to ten, the severity of my side effects is a one.
I don’t know exactly how to react to this development, as there have been so many ups and downs for me. Of course, I am pleased that the trail to my metaphorical cliff may be a lot longer than I thought. So much has happened, though, over the last five years, that it is hard to be elated about it. I am certainly content with my lot.
Something giving me some perspective, some insight into my overall condition occurred the next day. We remained in Portland because I had a preoperative appointment relating to the ear surgery I am having next month. They want to make sure I prepare correctly for the surgery and, I realize now, analyze how well I may be able to tolerate the procedure.
We talked at length with the doctor about my attitude, condition, anesthesia, etc. She was young and very personable and we established an easy rapport. She assured me that, in her judgement, the operation should go well for me. Then, in a candid moment, she confessed that, upon reading my oh, so lengthy chart she had expected to come into the exam room and find a very different person than I. She had not expected to find, in a 77 year old man who had experienced multiple operations, long hospital stays, complications, recurrence of disease, and new disease, a person as fit and relatively happy as I am. I thought, “Oh, here I am talking about my swim workouts and dancing, while any doctor who looks at my chart would ascertain that I might have a hard time surviving surgery." Well, she said after talking to me, she understood why the doctor said I'm a good candidate. I have been through a lot, but I try, rather than looking back, to look forward, take what comes, and in the present circumstance, feel some added gratitude for life.
As usual, thanks for listening, caring and, I know, for being happy that I can convey good news to you today.
Sunrise over the Willamette River on our big day.
Dr. Lopez points to tumor from two months ago which has diminished markedly on the left, yesterday's scan.
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Trail Wanderings Dec 4, 2019
I’m full of ideas to write about. As I drive along, as I lie in bed, while I’m swimming, things pop into my head that I think would be good to convey via written word. But then… I don’t do anything about it. What’s wrong with me? Laziness is the best answer, I guess. Occasionally, though, I do sit down to inform and opine; so here goes. This may get fairly long, so stop here if you are already yawning.
The bare details: I feel good. No significant changes in my quality of life. Forty four days in, the side effects of the new cancer drug are only subtle. Next week we travel up to Portland to scan my lungs to see what’s going on in there. Stay tuned; I’ll let you know what’s happening in that regard.
Last year at this time I was in the hospital for ten days dealing with complications from the biopsy surgery which confirmed the return of cancer in my lungs. My Thanksgiving dinner was a turkey plate delivered to my room. I can’t say I was feeling all that thankful at the time.
Gratitude. I’ve been thinking a lot lately, as we all do around Thanksgiving, about the things we are grateful for. Although there are reasons I could be discouraged, most of what fills my mind deals with what I’m grateful for.
First, for life, since it is fairly amazing that I am still smelling the flowers rather than fertilizing them. It was five years ago last weekend that I noticed the first subtle pain in my upper chest that was eventually diagnosed as esophageal cancer. Many of the people I encountered thereafter who were also fighting the disease are no longer with us.
Second, as mentioned above, I feel good. Most of the time, I’m happy. Although it is sometimes hard to be content with my diminished physical capacity, I manage it. A philosophical principle that I have tried to follow most of my life is that “the road to happiness is being content with what you have”. Right now I’m practicing the concept pretty well, but must admit that there have been times over the past five years when it’s been sorely tested. Feeling good now and having cheated death for five years make all the physical trials I have been through seem not so bad.
As I have said many times before, attitude is everything. I am grateful for all the people who have offered support and love, for that more than anything enables me to maintain a positive frame of mind. Mad, of course, is my constant companion and anchor. Friends around here, a diverse lot, are constantly offering me their encouragement. Although they are far removed, I feel the caring energy from my siblings, my kids, my grandchildren. Finally, all of you watching from afar, lurking, reading the blog… I know you are there, sending me good vibes and I appreciate you.
We were planning a tropical cruise just about now, but the new cancer therapy and my problem ear are keeping us at home, so we are stuck here, at east for the first half of winter. I whine about winter here in the mountains, but it’s not all that bad, really. It snowed recently, turning Camp Sherman into a winter wonderland. We got at least a foot from the storm, so Mad is happy to be on her skis again. Mt. Jefferson, when it appears from out of the clouds, is once again a shining white pyramid that never ceases to amaze (check our web cam, www.campshermancam.com). I chafe at the fact that I am not strong enough anymore to shovel mountains of snow around, that Madeleine and her “yard boys” have to do most of it.
I think a lot these days about the end of life. I don’t think of it as a morbid exercise. It’s hard to put into words, but I try to embrace death as a concept, not because I fear it as much as I wish to understand the process more fully. It’s more a matter of curiosity than dread, if that makes any sense, although, paradoxically, before cancer I was fearful of dying. I hope to face my eventual demise with dignity, which in my mind means fighting it off in every way possible, but only as long as I can maintain a reasonably comfortable quality of living. I am going to enjoy “being”… until I can’t anymore.
I liken my journey to walking along a trail with curiosity. There is still lots to see and enjoy along the route. There are many branches, some of which I must take, others that provide options. There is a cliff at the end of the trail, though. It’s the inevitable metaphorical cliff that every living being, human or animal, will face. How long will it take me to get to my cliff; how long for you to get to yours? I’m hoping that a long trail still stretches in front of me. And I’m hoping that yours is much longer still.
Trail Wanderings Dec 4, 2019
I’m full of ideas to write about. As I drive along, as I lie in bed, while I’m swimming, things pop into my head that I think would be good to convey via written word. But then… I don’t do anything about it. What’s wrong with me? Laziness is the best answer, I guess. Occasionally, though, I do sit down to inform and opine; so here goes. This may get fairly long, so stop here if you are already yawning.
The bare details: I feel good. No significant changes in my quality of life. Forty four days in, the side effects of the new cancer drug are only subtle. Next week we travel up to Portland to scan my lungs to see what’s going on in there. Stay tuned; I’ll let you know what’s happening in that regard.
Last year at this time I was in the hospital for ten days dealing with complications from the biopsy surgery which confirmed the return of cancer in my lungs. My Thanksgiving dinner was a turkey plate delivered to my room. I can’t say I was feeling all that thankful at the time.
Gratitude. I’ve been thinking a lot lately, as we all do around Thanksgiving, about the things we are grateful for. Although there are reasons I could be discouraged, most of what fills my mind deals with what I’m grateful for.
First, for life, since it is fairly amazing that I am still smelling the flowers rather than fertilizing them. It was five years ago last weekend that I noticed the first subtle pain in my upper chest that was eventually diagnosed as esophageal cancer. Many of the people I encountered thereafter who were also fighting the disease are no longer with us.
Second, as mentioned above, I feel good. Most of the time, I’m happy. Although it is sometimes hard to be content with my diminished physical capacity, I manage it. A philosophical principle that I have tried to follow most of my life is that “the road to happiness is being content with what you have”. Right now I’m practicing the concept pretty well, but must admit that there have been times over the past five years when it’s been sorely tested. Feeling good now and having cheated death for five years make all the physical trials I have been through seem not so bad.
As I have said many times before, attitude is everything. I am grateful for all the people who have offered support and love, for that more than anything enables me to maintain a positive frame of mind. Mad, of course, is my constant companion and anchor. Friends around here, a diverse lot, are constantly offering me their encouragement. Although they are far removed, I feel the caring energy from my siblings, my kids, my grandchildren. Finally, all of you watching from afar, lurking, reading the blog… I know you are there, sending me good vibes and I appreciate you.
We were planning a tropical cruise just about now, but the new cancer therapy and my problem ear are keeping us at home, so we are stuck here, at east for the first half of winter. I whine about winter here in the mountains, but it’s not all that bad, really. It snowed recently, turning Camp Sherman into a winter wonderland. We got at least a foot from the storm, so Mad is happy to be on her skis again. Mt. Jefferson, when it appears from out of the clouds, is once again a shining white pyramid that never ceases to amaze (check our web cam, www.campshermancam.com). I chafe at the fact that I am not strong enough anymore to shovel mountains of snow around, that Madeleine and her “yard boys” have to do most of it.
I think a lot these days about the end of life. I don’t think of it as a morbid exercise. It’s hard to put into words, but I try to embrace death as a concept, not because I fear it as much as I wish to understand the process more fully. It’s more a matter of curiosity than dread, if that makes any sense, although, paradoxically, before cancer I was fearful of dying. I hope to face my eventual demise with dignity, which in my mind means fighting it off in every way possible, but only as long as I can maintain a reasonably comfortable quality of living. I am going to enjoy “being”… until I can’t anymore.
I liken my journey to walking along a trail with curiosity. There is still lots to see and enjoy along the route. There are many branches, some of which I must take, others that provide options. There is a cliff at the end of the trail, though. It’s the inevitable metaphorical cliff that every living being, human or animal, will face. How long will it take me to get to my cliff; how long for you to get to yours? I’m hoping that a long trail still stretches in front of me. And I’m hoping that yours is much longer still.
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Another operation? You must be kidding! Nov 11, 2019
Here is what’s been going on in a nutshell. I feel great. I recently started a new cancer medicine. I’ve gone deaf in my right ear, which requires an operation to fix. Travel plans are on hold due to uncertainty of medical issues.
Ever hear of “Surfer’s Ear”? It is bony growths in the outer ears that can result in hearing loss due to closing off of the ear canal. It is caused by long term sporadic immersion of the head in cold water and is common in surfers and divers. About 20 years ago I saw an ear doctor for a regular checkup: “Wow, your ears are practically occluded by surfer’s nodules!” His response when I asked what to do about it: “There is an operation to ream out the bony growths, which you will inevitably need, but it is complicated and painful, so wait until your hearing is overtly affected.”
It is not surprising that I have this condition, given all the time I spent in the ocean in my teens and early adulthood. Now I have finally reached that inevitable time when one ear is completely closed off, necessitating surgery to get my hearing back on that side. Last month I had a minor ear infection, the swelling of which closed my right ear off completely. The first ENT doc I went to said, “I can’t see your ear drum; I cannot even get my instruments in there to clear out the gunk.” The second ENT doc I saw said, “You need an operation to get your hearing back, so I’m referring you to a surgeon in Portland.” The Portland ENT, actually a Neurotologist, said, “Yep, you have severe exostoses with conductive hearing loss, right side. You need an external auditory canal canaloplasty. You will be hearing from my surgery scheduler soon, as there is some immediacy to getting this done.”
Now on to the the elephant in the room, Cancer. As soon as we returned from our dancing and jazz festival in Sun Valley I started taking Tarceva, the targeted cancer drug I mentioned in the previous post. It’s just a little white pill. I have been on it for almost three weeks now. So far I have suffered none of the side effects that are common with the drug, but that is not to say they won’t crop up as it builds up in my body. We shall see. We won’t know whether or not anything is happening with the cancer until my next scan, which is early next month. Even then, it may take several subsequent scans to find out for sure if the cancer is regressing.
If this drug brings me more days on earth, that will be wonderful. Hope springs eternal, but I am mentally prepared for taking whatever happens with aplomb. The only bummer in life right now is that travel to the third world is out until my ear has been fixed and heals from surgery. I was really looking forward to spending some time on a ship in the tropics. As Mad says, we're traveling the Ear Canal, not the Panama Canal... Late
Another operation? You must be kidding! Nov 11, 2019
Here is what’s been going on in a nutshell. I feel great. I recently started a new cancer medicine. I’ve gone deaf in my right ear, which requires an operation to fix. Travel plans are on hold due to uncertainty of medical issues.
Ever hear of “Surfer’s Ear”? It is bony growths in the outer ears that can result in hearing loss due to closing off of the ear canal. It is caused by long term sporadic immersion of the head in cold water and is common in surfers and divers. About 20 years ago I saw an ear doctor for a regular checkup: “Wow, your ears are practically occluded by surfer’s nodules!” His response when I asked what to do about it: “There is an operation to ream out the bony growths, which you will inevitably need, but it is complicated and painful, so wait until your hearing is overtly affected.”
It is not surprising that I have this condition, given all the time I spent in the ocean in my teens and early adulthood. Now I have finally reached that inevitable time when one ear is completely closed off, necessitating surgery to get my hearing back on that side. Last month I had a minor ear infection, the swelling of which closed my right ear off completely. The first ENT doc I went to said, “I can’t see your ear drum; I cannot even get my instruments in there to clear out the gunk.” The second ENT doc I saw said, “You need an operation to get your hearing back, so I’m referring you to a surgeon in Portland.” The Portland ENT, actually a Neurotologist, said, “Yep, you have severe exostoses with conductive hearing loss, right side. You need an external auditory canal canaloplasty. You will be hearing from my surgery scheduler soon, as there is some immediacy to getting this done.”
Now on to the the elephant in the room, Cancer. As soon as we returned from our dancing and jazz festival in Sun Valley I started taking Tarceva, the targeted cancer drug I mentioned in the previous post. It’s just a little white pill. I have been on it for almost three weeks now. So far I have suffered none of the side effects that are common with the drug, but that is not to say they won’t crop up as it builds up in my body. We shall see. We won’t know whether or not anything is happening with the cancer until my next scan, which is early next month. Even then, it may take several subsequent scans to find out for sure if the cancer is regressing.
If this drug brings me more days on earth, that will be wonderful. Hope springs eternal, but I am mentally prepared for taking whatever happens with aplomb. The only bummer in life right now is that travel to the third world is out until my ear has been fixed and heals from surgery. I was really looking forward to spending some time on a ship in the tropics. As Mad says, we're traveling the Ear Canal, not the Panama Canal... Late
Pizza in Portland. We have an alternate life over there, and are grateful for so many supporting friends, too.
View north from Black Crater, the highest peak with a trail in central Oregon. May & I climbed it Saturday.
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Into the Unknown... again Oct 6, 2019
First of all, I feel fine; no pain, no untoward symptoms, happy.
So, here we go again, friends, arriving at another fork in the trail. Come along with me and we will see where this one leads. Hopefully, it is the route to extending my time on earth. I am guardedly optimistic and, as usual, trying my best to maintain a positive attitude. As long as I feel as good as I do, that is not too difficult. But… we just returned from OHSU in Portland, where the latest CT scan shows that one of the tumors in my lungs has grown significantly; 1 cm instead of the usual 1 or 2 millimeters. This complicates life because now is the time for treatment to start in the interest of controlling the heretofore “indolent” beast. We’ve had over a year in which we have done little except a biopsy. The November ’18 biopsy (which entailed complications itself) enabled us to ascertain for certain that it is cancer and to subject the sample to DNA testing. As long as the cancer remained “lazy” we could just wait around and have fun until the day arrived when something needed to be done… and that day has now arrived.
The sophisticated DNA testing shows that my particular cancer may respond to an anti-cancer drug called Tarceva. Emphasis is on the word “may”, as it is largely uncharted for treatment of esophageal cancer (EC), but it has proven effective in treatment of some pancreatic and lung cancers. You can read about one study here https://www.medscape.com/viewarticle/835088 . Like those who responded well in a subgroup of the study, I have increased copies of the EGFR gene.
Although it is disappointing that the cancer has become active to the point where treatment is again necessary, it was inevitable that we would eventually reach this point. So in some ways I am glad we are now attacking it after waiting around for such a long time. There is the possibility that the drug will inhibit and maybe even diminish the tumors, so we will just have to wait and hope; hope that I am in the small percentage of patients whose disease responds positively.
Cancer can be complicated. My doctors are surprised that I am still alive; they are surprised that I “look so good”. They just shake their heads and say things like, “Your case is way out there on the fringes of what we understand.”
Overall, it’s been a good year. I won’t start this new phase until after we get back from the Sun Valley Jazz festival, since three weeks won’t make a big difference. And since the new medicine is a pill rather than an infusion, we hope to have the flexibility to plan some fun trips later this fall and winter.
Below, Mad finally got the photos from the last post about our summer to upload.
snowbank camp where we enjoyed pikas, marmots, wildflowers, a waterfall and a few mosquitos
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3 generations: Wyatt, Hayden & Tom hiking out on what might be Tom's last backpack trip...
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Bruce playing shakuhachi to the giant sequoias in Muir Grove
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spring in the high country (yes we swam, briefly, in the other end of this tarn!)
my campsite at 11,224' where the sun and full moon were intense, but the view is sooo beautiful!
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Life is good Sep 24, 2019
A year ago today I found out that cancer had returned to my life. With the exception of the two weeks I had to spend in the hospital for biopsy in November, the ensuing year has actually been pretty good. I go in for another CT scan next week to see what’s happened since July. So, I will be communicating with you again soon with those results. If the cancer is still “indolent” they will give me another few months of “freedom”; if it has grown significantly they will put me on some sort of treatment regimen. Of course, I am hoping for the former.
We spent much of August traveling in California, hiking and road tripping.
First we did a four day backpack trip off Tioga Pass near Yosemite with Hayden, Sydney and Wyatt. It was great to be in the high granite again with family, but discouraging, too, as my power has diminished significantly. I have lost so much lung capacity and endurance that a piddly little hike taxed my energy reserves to the max.
Next Madeleine and I drove all the way around to the other side of the Sierra, where we met up with our friend & shakuhachi player extraordinaire, Bruce Huebner in Sequoia NP. Mad had planned an eight day backpack to a high, airy, isolated part of the Sierra. We had done the same two years ago, but were chased off the heights by bad weather. Knowing I can no longer handle the physical demands of such a hike is hard on me emotionally. As I watched Mad and Bruce head on up the trail, we both shed a tear that we could no longer share something so dear to us. I’m glad that she can still do it though, and glad that she had Bruce to accompany her. Marilyn aka Giggles was supposed to backpack with Mad the whole month, but unfortunately broke a bone in her foot right before flying out from Omaha, so she spent 6 weeks in an orthopedic, not hiking, boot ... :(
Next I headed off for Balboa Island for a rendezvous with my two sisters and Hayden’s family at their beach house. Wow! What an eye opener to spend time in Southern California after many years away. While there I had a great time, but was really glad to leave. People, people, people… rampant development. And traffic… oh, the traffic! Having lived so many years in the boonies, it’s a shock, not unanticipated, but rude. It was good, though, to have time with family and reconnect with old friends. I visited Sally Bromfield in Santa Barbara on the way down and had nice visits with Pete Hall, Fred Port, Dick Douglas and Alan Grant. I even stopped by Zuma Beach, one of my lifeguard haunts from the early 60’s and noticed with amazement at headquarters that my name is still up on the trophy wall 58 years hence.
Wending my way North again, I picked Mad and Bruce up in the mountains. They had a fabulous hike up into the high country. I demurred on doing another hike with them, knowing intuitively it would be too hard on me and would slow them down too much. We did take a nice dayhike into the Muir Grove of giant sequoias and filmed Bruce playing shakuhachi in the majestic trees! After dropping him off in Fresno, we visited other old friends Cal French and Al French (not related) then traveled to Truckee to spend a few days with Brooke and family. That was nice, as I had not seen them for quite some time. In Chico we saw Mad's brother Carl and his wife Annie, and Mad's oldest friend Marie.
This month we have been just hanging around Camp Sherman enjoying life at home. I feel good; no untoward symptoms other than normal old man stuff. I’m still feeling good in swim workouts. What’s in the future depends upon next week’s tests. We are hoping things remain “stable” in the cancer department so we can go to our favorite jazz festival in Sun Valley and maybe a cruise in November.
Life is good. I’m enjoying it as much as I can, while I can. I get a lot of positive energy from everyone around me and that helps immeasurably. Add that to Mad’s constant good humor and rock solid encouragement and you have a guy here who feels very lucky to be alive and motivated to stay that way as long as possible.
I’ll be talking to you all again in a week or so with more concrete news.
A year ago today I found out that cancer had returned to my life. With the exception of the two weeks I had to spend in the hospital for biopsy in November, the ensuing year has actually been pretty good. I go in for another CT scan next week to see what’s happened since July. So, I will be communicating with you again soon with those results. If the cancer is still “indolent” they will give me another few months of “freedom”; if it has grown significantly they will put me on some sort of treatment regimen. Of course, I am hoping for the former.
We spent much of August traveling in California, hiking and road tripping.
First we did a four day backpack trip off Tioga Pass near Yosemite with Hayden, Sydney and Wyatt. It was great to be in the high granite again with family, but discouraging, too, as my power has diminished significantly. I have lost so much lung capacity and endurance that a piddly little hike taxed my energy reserves to the max.
Next Madeleine and I drove all the way around to the other side of the Sierra, where we met up with our friend & shakuhachi player extraordinaire, Bruce Huebner in Sequoia NP. Mad had planned an eight day backpack to a high, airy, isolated part of the Sierra. We had done the same two years ago, but were chased off the heights by bad weather. Knowing I can no longer handle the physical demands of such a hike is hard on me emotionally. As I watched Mad and Bruce head on up the trail, we both shed a tear that we could no longer share something so dear to us. I’m glad that she can still do it though, and glad that she had Bruce to accompany her. Marilyn aka Giggles was supposed to backpack with Mad the whole month, but unfortunately broke a bone in her foot right before flying out from Omaha, so she spent 6 weeks in an orthopedic, not hiking, boot ... :(
Next I headed off for Balboa Island for a rendezvous with my two sisters and Hayden’s family at their beach house. Wow! What an eye opener to spend time in Southern California after many years away. While there I had a great time, but was really glad to leave. People, people, people… rampant development. And traffic… oh, the traffic! Having lived so many years in the boonies, it’s a shock, not unanticipated, but rude. It was good, though, to have time with family and reconnect with old friends. I visited Sally Bromfield in Santa Barbara on the way down and had nice visits with Pete Hall, Fred Port, Dick Douglas and Alan Grant. I even stopped by Zuma Beach, one of my lifeguard haunts from the early 60’s and noticed with amazement at headquarters that my name is still up on the trophy wall 58 years hence.
Wending my way North again, I picked Mad and Bruce up in the mountains. They had a fabulous hike up into the high country. I demurred on doing another hike with them, knowing intuitively it would be too hard on me and would slow them down too much. We did take a nice dayhike into the Muir Grove of giant sequoias and filmed Bruce playing shakuhachi in the majestic trees! After dropping him off in Fresno, we visited other old friends Cal French and Al French (not related) then traveled to Truckee to spend a few days with Brooke and family. That was nice, as I had not seen them for quite some time. In Chico we saw Mad's brother Carl and his wife Annie, and Mad's oldest friend Marie.
This month we have been just hanging around Camp Sherman enjoying life at home. I feel good; no untoward symptoms other than normal old man stuff. I’m still feeling good in swim workouts. What’s in the future depends upon next week’s tests. We are hoping things remain “stable” in the cancer department so we can go to our favorite jazz festival in Sun Valley and maybe a cruise in November.
Life is good. I’m enjoying it as much as I can, while I can. I get a lot of positive energy from everyone around me and that helps immeasurably. Add that to Mad’s constant good humor and rock solid encouragement and you have a guy here who feels very lucky to be alive and motivated to stay that way as long as possible.
I’ll be talking to you all again in a week or so with more concrete news.
Summer Fun Aug 4, 2019
Hey out there.... no health news to report. Everything is basically the same. Bottom line is that I feel good.
I just wanted to say that I will be in Orange County for several days starting August 13th. So, if any of my friends in that area want to get together, contact me by direct personal email: [email protected]. I'm joining son Hayden for some beach time at my sister's house on Balboa Island and could be met there when family functions don't get in the way. It would be cool to see some of my long ago friends face to face again.
It's going to be a good month!! Lots more going on, but that's for another posting.
Tomas'
Hey out there.... no health news to report. Everything is basically the same. Bottom line is that I feel good.
I just wanted to say that I will be in Orange County for several days starting August 13th. So, if any of my friends in that area want to get together, contact me by direct personal email: [email protected]. I'm joining son Hayden for some beach time at my sister's house on Balboa Island and could be met there when family functions don't get in the way. It would be cool to see some of my long ago friends face to face again.
It's going to be a good month!! Lots more going on, but that's for another posting.
Tomas'
"Stable to minimally progressed" Jul 23, 2019
I am feeling a bit contrite today because my CT scan was a week ago today and I’ve been procrastinating about writing. Not that the news is bad; it’s good! I guess I’m just a lazy slug after everything that has been going on in life. “My public” have been wondering, though, so I apologize for being tardy. The scan shows that the cancer has grown only minimally. The radiologist's impression is stable to minimally progressed pulmonary metastatic disease... which is a bit perplexing to my doctors. “Keep doing what you’re doing!” is their attitude now. The immediate impact is that there is no treatment on the near horizon, so I have “freedom” until the next scan in early October. Why is my cancer so lazy? No one can say. It may be pure luck, or maybe something I am doing or have done that impedes the tumors from actively growing. Probably it’s a combination of factors that are unique to my particular cancer.
I have had regular monitoring scans and a biopsy, but other than that no cancer treatment (except the wedge resection in '16 for a solitary nodule) for over four years. Last September, when talking to my thoracic surgeon prior to a biopsy, I asked him what would happen if I did nothing going forward. His opinion: "You'd certainly live one year, likely be alive in two years but almost certainly be dead in three because it would metastasize to other organs". Subsequent to that I have still not done any treatment and the cancer has remained indolent; no symptoms attributable to the cancer either. So, am I just lucky? Is it fitness, attitude, visualizations? Perhaps regular cannabis use? Nobody knows, nor can know, so I’ll continue enjoying life while I feel good and keep doing what I’m doing.
I am still on antibiotic treatment for the bacterial infections in my lungs. Even though that seems to have stabilized, too, they want me to keep doing the medicine; no drugs for cancer, lots for the NTM infection.
Something that might interest you is that there is a drug called Tarceva which may be effective in controlling my particular cancer. It has proven to be useful for impeding pancreatic and lung cancer in some people. There was some evidence in a small trial in the UK in 2014 that indicate it may help in the treatment of esophageal cancer metastases. It is very expensive and my insurance company has denied it twice. So I am in a special program through the medical school that gets the drug directly from the manufacturer at a more affordable cost. I won’t have to start taking it until my cancer becomes more active, but my oncologist is getting his ducks in a row in anticipation of that eventuality.
Well, I told you in my last post that I would be forthcoming with details when I knew them, so there you are! As for the near future, our plans are still nebulous, but will entail hiking in the High Sierra and possibly some time at the beach with Hayden’s family. I hope to spend some time with Brooke, too, to hear all her stories of living in Rome for the last several months.
I cherish each day as a gift and look forward to many more. As usual, I am grateful to everyone for their support and caring energy.
I am feeling a bit contrite today because my CT scan was a week ago today and I’ve been procrastinating about writing. Not that the news is bad; it’s good! I guess I’m just a lazy slug after everything that has been going on in life. “My public” have been wondering, though, so I apologize for being tardy. The scan shows that the cancer has grown only minimally. The radiologist's impression is stable to minimally progressed pulmonary metastatic disease... which is a bit perplexing to my doctors. “Keep doing what you’re doing!” is their attitude now. The immediate impact is that there is no treatment on the near horizon, so I have “freedom” until the next scan in early October. Why is my cancer so lazy? No one can say. It may be pure luck, or maybe something I am doing or have done that impedes the tumors from actively growing. Probably it’s a combination of factors that are unique to my particular cancer.
I have had regular monitoring scans and a biopsy, but other than that no cancer treatment (except the wedge resection in '16 for a solitary nodule) for over four years. Last September, when talking to my thoracic surgeon prior to a biopsy, I asked him what would happen if I did nothing going forward. His opinion: "You'd certainly live one year, likely be alive in two years but almost certainly be dead in three because it would metastasize to other organs". Subsequent to that I have still not done any treatment and the cancer has remained indolent; no symptoms attributable to the cancer either. So, am I just lucky? Is it fitness, attitude, visualizations? Perhaps regular cannabis use? Nobody knows, nor can know, so I’ll continue enjoying life while I feel good and keep doing what I’m doing.
I am still on antibiotic treatment for the bacterial infections in my lungs. Even though that seems to have stabilized, too, they want me to keep doing the medicine; no drugs for cancer, lots for the NTM infection.
Something that might interest you is that there is a drug called Tarceva which may be effective in controlling my particular cancer. It has proven to be useful for impeding pancreatic and lung cancer in some people. There was some evidence in a small trial in the UK in 2014 that indicate it may help in the treatment of esophageal cancer metastases. It is very expensive and my insurance company has denied it twice. So I am in a special program through the medical school that gets the drug directly from the manufacturer at a more affordable cost. I won’t have to start taking it until my cancer becomes more active, but my oncologist is getting his ducks in a row in anticipation of that eventuality.
Well, I told you in my last post that I would be forthcoming with details when I knew them, so there you are! As for the near future, our plans are still nebulous, but will entail hiking in the High Sierra and possibly some time at the beach with Hayden’s family. I hope to spend some time with Brooke, too, to hear all her stories of living in Rome for the last several months.
I cherish each day as a gift and look forward to many more. As usual, I am grateful to everyone for their support and caring energy.
North to Alaska — Jul 13, 2019
First of all, I’m okay. I feel good. I’ve been enjoying life. There is no difference in my overall condition that I can perceive. So this post hasn’t a lot to do with the details of my health challenges. That will come next Tuesday after I’ve seen my doctors subsequent to the next CT cancer scan.
Last weekend we returned from a cruise up the inside passage, beginning in Vancouver and ending in Anchorage. What a fantastic trip! I had no idea how beautiful the scenery would be, how awesome the mountains are. We went on a small ship (only 200 passengers) which was able to go way up into the fjords to give us access to various tidewater glaciers. We kayaked up to near their termini, watching ice chunks calve off their faces. Awesome. The noise was like thunder! This is something I had looked forward to experiencing my whole life. We were on board Star Legend, one of Windstar Cruise Lines’ several ships. This is the same company we were with in Tahiti, and like that trip, the food, service and general ambience were superb. An added bonus was that we could dance for hours every night to live music by two talented Latin duos. And, we also met some really fun people and guides.
This morning Mad and I sat quietly beside her Zen garden, which is a green oasis within our otherwise scruffy yard. Hummingbirds buzzed our heads and various other birds; siskins, nuthatches, chickadees, jays and more flitted about feeders and water. You would think that, as one ages, the wonders of nature would become old hat, but for me they are just as vivid, just as inspiring as ever. A hummer hovering a few inches away then suddenly disappearing in a blur is still and as always a miracle to me.
The river this time of year is particularly beautiful, in spite of the summer crowds. Riparian vegetation is lush, the water is pure and wildflowers are profuse. Again, you would think it would get old walking the same trails over and over, but it never does. I am ever grateful to have this so near at hand. The wonders of nature, small and large, make it so great to just be alive.
I think of life and death often these days. Old age and disease are discouraging at times, and I cannot say it doesn’t get to me occasionally. But most of the time, for reasons stated above and more, I will not let that get me down. There is just too much life within me! After I’m gone, I won’t know the difference anyway, will I, so why sweat it?
First of all, I’m okay. I feel good. I’ve been enjoying life. There is no difference in my overall condition that I can perceive. So this post hasn’t a lot to do with the details of my health challenges. That will come next Tuesday after I’ve seen my doctors subsequent to the next CT cancer scan.
Last weekend we returned from a cruise up the inside passage, beginning in Vancouver and ending in Anchorage. What a fantastic trip! I had no idea how beautiful the scenery would be, how awesome the mountains are. We went on a small ship (only 200 passengers) which was able to go way up into the fjords to give us access to various tidewater glaciers. We kayaked up to near their termini, watching ice chunks calve off their faces. Awesome. The noise was like thunder! This is something I had looked forward to experiencing my whole life. We were on board Star Legend, one of Windstar Cruise Lines’ several ships. This is the same company we were with in Tahiti, and like that trip, the food, service and general ambience were superb. An added bonus was that we could dance for hours every night to live music by two talented Latin duos. And, we also met some really fun people and guides.
This morning Mad and I sat quietly beside her Zen garden, which is a green oasis within our otherwise scruffy yard. Hummingbirds buzzed our heads and various other birds; siskins, nuthatches, chickadees, jays and more flitted about feeders and water. You would think that, as one ages, the wonders of nature would become old hat, but for me they are just as vivid, just as inspiring as ever. A hummer hovering a few inches away then suddenly disappearing in a blur is still and as always a miracle to me.
The river this time of year is particularly beautiful, in spite of the summer crowds. Riparian vegetation is lush, the water is pure and wildflowers are profuse. Again, you would think it would get old walking the same trails over and over, but it never does. I am ever grateful to have this so near at hand. The wonders of nature, small and large, make it so great to just be alive.
I think of life and death often these days. Old age and disease are discouraging at times, and I cannot say it doesn’t get to me occasionally. But most of the time, for reasons stated above and more, I will not let that get me down. There is just too much life within me! After I’m gone, I won’t know the difference anyway, will I, so why sweat it?
"Your scan looks good... but" — May 19, 2019
Dr. Lopez: “Your scan looks good. Cancer still exists in multiple places in your lungs, but, inexplicably, growing very slowly. (millimeters vs centimeters) Come back in a few months and we will see what’s happening then.”
Dr. Winthrop: “Your scan looks good, but your antibiotic treatment is still necessary, at least through the summer. Come back in a few months.”
Radiologist's summary impression of CT scan: “Stable to minimally progressed pulmonary metastatic disease. Essentially unchanged appearance of MAI.”
MAI is short for Mycobacterium Avium Intracellulare. It’s also called NTM, Non Tuburcular Mycobacterium. These are the bacteria Dr. Winthrop has been treating with antibiotics for so long.
So, bottom line, what does all this mean? Two more months, at least, of freedom from any complicated medical procedures. The cancer is growing so slowly that nothing needs to be done just now and antibiotics seem to be keeping the NTM infection under control.
Overall, I feel great! I get out of breath easier than I would like, but the aging process would eventually cause that anyway. A chronic productive cough is always with me, but manageable. I try to swim with as much regularity as the vicissitudes of life allow, and hike sporadically. (Mad: we dance every night in the living room too!) My swim times in workout have stayed pretty consistent over the last few years, so I don’t think my aerobic capacity is diminishing significantly, in spite of the diseases that infest my lungs. Sometimes I chafe at not being able to compete at a high level anymore, but that is a minor element in the big picture of my life. I get some consolation in the knowledge that I’m still in better shape than most guys my age.
Since my last post, we took a fun trip down to Eureka for a jazz festival, where we danced our little feet off for four days to great live music It’s so much fun to have something intimate like that to enjoy with one’s life partner. We spent some time hiking in the redwoods on the way down; I tested myself with some uphill grinding and did okay. Damn, that forest is one of the most beautiful places on earth! I can remember hiking with my mother in the Prairie Creek redwoods 60 years ago and it still generates that same sense of awe within me.
After Eureka, we drove up the Oregon coast, straight to Portland for CT scan and doctor visits that you see the results of above. Now we are home, enjoying hanging out and cogitating about what we’re going to do for fun over the next few months. We’re thinking, possibly, of a cruise in Alaska next month, but that idea’s still in the formative stages.
That’s it for now, friends. No philosophizing on life and death this time around, but stay tuned, as there is a lot going on in my head.
Madeleine here: New to our team of support at OHSU as of March is Dr. Timothy Siegel, specializing in surgical oncology and palliative care. I met him at the esophageal cancer research dinner in February and was impressed by his talk on the benefits of palliative care for everyone with cancer, and at any stage. It is not hospice care, but rather they help patients make complicated medical decisions so they and their loved ones can live a higher quality life to ‘the end’. He is simply getting to know both of us now and turns out he likes jazz too (he even plays the trombone and is a swimmer!) So far he says we’re doing well! We see him right after we see Tom’s oncologist Dr Lopez with the latest scan results, so the timing is perfect. Gratitude to Claude too for unwavering support!
Gratitude for all love and support you’re sending our way!
Dr. Lopez: “Your scan looks good. Cancer still exists in multiple places in your lungs, but, inexplicably, growing very slowly. (millimeters vs centimeters) Come back in a few months and we will see what’s happening then.”
Dr. Winthrop: “Your scan looks good, but your antibiotic treatment is still necessary, at least through the summer. Come back in a few months.”
Radiologist's summary impression of CT scan: “Stable to minimally progressed pulmonary metastatic disease. Essentially unchanged appearance of MAI.”
MAI is short for Mycobacterium Avium Intracellulare. It’s also called NTM, Non Tuburcular Mycobacterium. These are the bacteria Dr. Winthrop has been treating with antibiotics for so long.
So, bottom line, what does all this mean? Two more months, at least, of freedom from any complicated medical procedures. The cancer is growing so slowly that nothing needs to be done just now and antibiotics seem to be keeping the NTM infection under control.
Overall, I feel great! I get out of breath easier than I would like, but the aging process would eventually cause that anyway. A chronic productive cough is always with me, but manageable. I try to swim with as much regularity as the vicissitudes of life allow, and hike sporadically. (Mad: we dance every night in the living room too!) My swim times in workout have stayed pretty consistent over the last few years, so I don’t think my aerobic capacity is diminishing significantly, in spite of the diseases that infest my lungs. Sometimes I chafe at not being able to compete at a high level anymore, but that is a minor element in the big picture of my life. I get some consolation in the knowledge that I’m still in better shape than most guys my age.
Since my last post, we took a fun trip down to Eureka for a jazz festival, where we danced our little feet off for four days to great live music It’s so much fun to have something intimate like that to enjoy with one’s life partner. We spent some time hiking in the redwoods on the way down; I tested myself with some uphill grinding and did okay. Damn, that forest is one of the most beautiful places on earth! I can remember hiking with my mother in the Prairie Creek redwoods 60 years ago and it still generates that same sense of awe within me.
After Eureka, we drove up the Oregon coast, straight to Portland for CT scan and doctor visits that you see the results of above. Now we are home, enjoying hanging out and cogitating about what we’re going to do for fun over the next few months. We’re thinking, possibly, of a cruise in Alaska next month, but that idea’s still in the formative stages.
That’s it for now, friends. No philosophizing on life and death this time around, but stay tuned, as there is a lot going on in my head.
Madeleine here: New to our team of support at OHSU as of March is Dr. Timothy Siegel, specializing in surgical oncology and palliative care. I met him at the esophageal cancer research dinner in February and was impressed by his talk on the benefits of palliative care for everyone with cancer, and at any stage. It is not hospice care, but rather they help patients make complicated medical decisions so they and their loved ones can live a higher quality life to ‘the end’. He is simply getting to know both of us now and turns out he likes jazz too (he even plays the trombone and is a swimmer!) So far he says we’re doing well! We see him right after we see Tom’s oncologist Dr Lopez with the latest scan results, so the timing is perfect. Gratitude to Claude too for unwavering support!
Gratitude for all love and support you’re sending our way!
"Cheating Death" in Tahiti — May 7, 2019 Picture this. We are in the Society Islands of French Polynesia. We are sailing on a 37 foot boat between the islands of Taha’a and Raiatea. I am standing near the stern of the boat while my friend, Doug Phillips, steers the boat. Madeleine and Doug’s wife, Tonye are in the cockpit enjoying the ride. We are heeled over, using only our headsail in a 20-25 knot wind. It’s a glorious day. Azure cloud bedecked skies above, crystalline water below and trade winds pushing us along at a good clip. Rail of the boat close to being underwater and spray flying over the bow. Tonye called it a “brisk” sail.
Or… we are at anchor inside the reef on the far side of Taha’a, looking across at Bora Bora, the most iconic island of the tropical Pacific. It’s beauty is practically beyond description. I’m filled with a sense of wellbeing as evening cocktails are served and we take in the beautiful surroundings with our good friends.
These are what I used to call “peak experiences”, but which I now refer to as “cheating death moments”. Whatever you wish to call them, they are special and life is full of them. It seems, though, as life progresses into old age and particularly if you have seen the prospect of death up close, that these experiences become all the more vivid, all the more to be cherished.
I call our Tahiti trip a “cheating death trip”. I think about life and death a lot lately, not in a morbid way, but just coming to terms with their deeper meaning. I could expound on my ruminations of Cheating Death, but it would just take up too much space here. Maybe some other time… do I keep promising that and then not delivering?
But I digress. Our plans, because of medical issues have to be fairly impromptu, hence we decided on the Tahiti trip on the spur of the moment. Doug and Tonye invited us to come cruise with them for a week and we thought, “Why not!” But one week is not long enough for an epic trip, so we booked another week on a posh small sailing ship which cruises around six islands. Small is only relative, however. Some cruise ships have 3,000 passengers or more. This one had 148 passengers, with 101 crew. But Doug and Tonye’s boat is not as long as this ship is wide. Comfortable stateroom, courteous crew and delicious food, coupled with the fantastic beauty of the islands made for a memorable “cheating death cruise”.
As for my health. I’m feeling great. A few symptoms attributable to the diseases that reside in my lungs, but they only slow me down a little bit. We have one more week of playing before my next CT scan next week. We’re headed to Eureka, CA via the redwoods for a four day jazz festival. Live music, great bands, dancing, staying in a big old Victorian hotel, then blast up the coast to OSHU.
Turns out my biology might not be as “lazy” as we first thought in the last post; a few suspicious things showing up on the final read. That was motivating to have some serious fun! So the oncologist asked me to come back in two months rather than the usual three, but did not think any treatment was necessary in the interim. I am guarded about being optimistic, but it is my nature to hope for the good rather than worry about the bad. So I am hoping for a good result that will enable us to have fun this summer rather than be tied down with medical treatments. Time will tell. I’ll let you know what is happening in this regard sometime late next week.
Or… we are at anchor inside the reef on the far side of Taha’a, looking across at Bora Bora, the most iconic island of the tropical Pacific. It’s beauty is practically beyond description. I’m filled with a sense of wellbeing as evening cocktails are served and we take in the beautiful surroundings with our good friends.
These are what I used to call “peak experiences”, but which I now refer to as “cheating death moments”. Whatever you wish to call them, they are special and life is full of them. It seems, though, as life progresses into old age and particularly if you have seen the prospect of death up close, that these experiences become all the more vivid, all the more to be cherished.
I call our Tahiti trip a “cheating death trip”. I think about life and death a lot lately, not in a morbid way, but just coming to terms with their deeper meaning. I could expound on my ruminations of Cheating Death, but it would just take up too much space here. Maybe some other time… do I keep promising that and then not delivering?
But I digress. Our plans, because of medical issues have to be fairly impromptu, hence we decided on the Tahiti trip on the spur of the moment. Doug and Tonye invited us to come cruise with them for a week and we thought, “Why not!” But one week is not long enough for an epic trip, so we booked another week on a posh small sailing ship which cruises around six islands. Small is only relative, however. Some cruise ships have 3,000 passengers or more. This one had 148 passengers, with 101 crew. But Doug and Tonye’s boat is not as long as this ship is wide. Comfortable stateroom, courteous crew and delicious food, coupled with the fantastic beauty of the islands made for a memorable “cheating death cruise”.
As for my health. I’m feeling great. A few symptoms attributable to the diseases that reside in my lungs, but they only slow me down a little bit. We have one more week of playing before my next CT scan next week. We’re headed to Eureka, CA via the redwoods for a four day jazz festival. Live music, great bands, dancing, staying in a big old Victorian hotel, then blast up the coast to OSHU.
Turns out my biology might not be as “lazy” as we first thought in the last post; a few suspicious things showing up on the final read. That was motivating to have some serious fun! So the oncologist asked me to come back in two months rather than the usual three, but did not think any treatment was necessary in the interim. I am guarded about being optimistic, but it is my nature to hope for the good rather than worry about the bad. So I am hoping for a good result that will enable us to have fun this summer rather than be tied down with medical treatments. Time will tell. I’ll let you know what is happening in this regard sometime late next week.
Lazy Biology March 16th
I feel a great sense of well being today. And I am not under the influence of any mind altering substances… yet. Mad is out skiing with a couple of her girlfriends, Sarah and Karen, part of her wonderful support group here in Camp Sherman. They skied right out the door, which is pretty cool. Some spots of bare ground are appearing under the trees, but the snow cover is still pretty complete otherwise. It (the snow) is compacting and melting now that the weather has started to warm up a bit after a long spate of cold temps, but there is still a lot of it for this time of year. Mount Jefferson is out in all its glory, a pure white pyramid in the near distance.
Earlier this week I had my three month CT scan. The next day I met with my Portland oncologist, Dr. Lopez, to discuss the results. It is always a little nerve wracking, waiting for the “verdict”. His first words when he walked in to the examination room were, “You look great!” It’s always good when doctors tell you that. I have learned that they don’t say it unless they mean it. I’m sure it makes them feel good to be able to say it with sincerity. He told us the good news that my 3 known tumors have not grown since the last scan in December. I try to take such results in stride, but I must admit to a surge of elation at the news. Doctor Lopez used the term “lazy biology” to characterize my tumors. This means that, at the moment, they are just hanging around, not doing much. Gee, that sounds a lot like me. The bottom line is that we don’t have to do anything in the way of treatment for another three months. How nice to get another reprieve, which allows us to plan some future fun without the complication of cancer therapies.
He also discussed the results of the molecular analysis of the tissue sample they surgically took from the tumor in November. These fall under the general category of “precision medicine” and are all the rage in cancer treatment lately, opening up myriad possibilities. Dr. Lopez professed to be “intrigued” by some of the results, but there is no need to pursue anything while my cancer is “indolent”. With every month that goes by, more possibilities for precision medicine treatments come to light, so the longer my cancer remains quiescent the better in regard to future therapies.
If you have been waiting for the “philosophical ruminating” I promised in my last missive, I apologize. I often lie awake at night thinking about life and death and what it all means in the context of incurable diseases. In the morning it doesn’t seem so eloquent, or, more likely, I’ve forgotten about it. Or, I am just lazy about “putting pen to paper”.
I’m feeling pretty good lately, in spite of the two diseases that reside in my lungs. As I have said many times before, I lament the fact that disease and old age have taken away so much of my strength. Intellectually, I balance that against my knowledge that I am still in better shape physically than most 77 year old men (well, 77 next month). My workouts lately have been pretty good; swimming against the clock shows me that my fitness has not diminished significantly over the last year.
During the fall I was a bit worried about all the weight I had lost, but over winter I have regained about ten pounds, a very good sign. Through most of my adulthood my weight stayed around 185. Last summer it got down a bit below 150; now it’s up to 160. Where did all those muscles go?
I was watching guys at a championship swim meet on TV the other day. It could have been a triathlon or a surf contest, though. They are all a bunch of 20-something hunks who are incredibly fast and strong. It can make one wistful about days of yore. “Gee, I used to look like that!” It’s okay to fantasize being young again, as long as one ages gracefully by not trying to deny the diminishing effects of the aging process, right? Consolation for the old farts is that the young farts have to go to work every day for the next 40 years… and that they will be in the same place as we are someday.
That’s it for now. I have some thoughts about role models, but will save them for another time. Thanks for listening and caring.
I feel a great sense of well being today. And I am not under the influence of any mind altering substances… yet. Mad is out skiing with a couple of her girlfriends, Sarah and Karen, part of her wonderful support group here in Camp Sherman. They skied right out the door, which is pretty cool. Some spots of bare ground are appearing under the trees, but the snow cover is still pretty complete otherwise. It (the snow) is compacting and melting now that the weather has started to warm up a bit after a long spate of cold temps, but there is still a lot of it for this time of year. Mount Jefferson is out in all its glory, a pure white pyramid in the near distance.
Earlier this week I had my three month CT scan. The next day I met with my Portland oncologist, Dr. Lopez, to discuss the results. It is always a little nerve wracking, waiting for the “verdict”. His first words when he walked in to the examination room were, “You look great!” It’s always good when doctors tell you that. I have learned that they don’t say it unless they mean it. I’m sure it makes them feel good to be able to say it with sincerity. He told us the good news that my 3 known tumors have not grown since the last scan in December. I try to take such results in stride, but I must admit to a surge of elation at the news. Doctor Lopez used the term “lazy biology” to characterize my tumors. This means that, at the moment, they are just hanging around, not doing much. Gee, that sounds a lot like me. The bottom line is that we don’t have to do anything in the way of treatment for another three months. How nice to get another reprieve, which allows us to plan some future fun without the complication of cancer therapies.
He also discussed the results of the molecular analysis of the tissue sample they surgically took from the tumor in November. These fall under the general category of “precision medicine” and are all the rage in cancer treatment lately, opening up myriad possibilities. Dr. Lopez professed to be “intrigued” by some of the results, but there is no need to pursue anything while my cancer is “indolent”. With every month that goes by, more possibilities for precision medicine treatments come to light, so the longer my cancer remains quiescent the better in regard to future therapies.
If you have been waiting for the “philosophical ruminating” I promised in my last missive, I apologize. I often lie awake at night thinking about life and death and what it all means in the context of incurable diseases. In the morning it doesn’t seem so eloquent, or, more likely, I’ve forgotten about it. Or, I am just lazy about “putting pen to paper”.
I’m feeling pretty good lately, in spite of the two diseases that reside in my lungs. As I have said many times before, I lament the fact that disease and old age have taken away so much of my strength. Intellectually, I balance that against my knowledge that I am still in better shape physically than most 77 year old men (well, 77 next month). My workouts lately have been pretty good; swimming against the clock shows me that my fitness has not diminished significantly over the last year.
During the fall I was a bit worried about all the weight I had lost, but over winter I have regained about ten pounds, a very good sign. Through most of my adulthood my weight stayed around 185. Last summer it got down a bit below 150; now it’s up to 160. Where did all those muscles go?
I was watching guys at a championship swim meet on TV the other day. It could have been a triathlon or a surf contest, though. They are all a bunch of 20-something hunks who are incredibly fast and strong. It can make one wistful about days of yore. “Gee, I used to look like that!” It’s okay to fantasize being young again, as long as one ages gracefully by not trying to deny the diminishing effects of the aging process, right? Consolation for the old farts is that the young farts have to go to work every day for the next 40 years… and that they will be in the same place as we are someday.
That’s it for now. I have some thoughts about role models, but will save them for another time. Thanks for listening and caring.
Parade of Pills — Feb 3, 2019
I have been having a wide ranging introspective discussion with myself lately relating to what I believe in and how it relates to my health. There’s a lot more than one blog post in my head, but many of you have encouraged me to continue my philosophical rambling, so I am. First of all, though, I feel great! A few symptoms. Chronic productive cough due to the damage in my lungs. Sporadic shortness of breath for the same reason, though advancing age is also a causative factor I’m sure. Swim workouts show me that my overall fitness has not diminished much, if at all, during the past year. The pace clock doesn’t lie!
Over the last two weeks I visited both my lung doctor and my local oncologist. Both were upbeat. Both told me that I “look good”, a very good sign, coming from them. Neither disease is cured, but both are momentarily under control.
According to Dr. Schmidt, the cancer in my lungs is “indolent”, meaning not doing much. No treatment just now, but probably something in the future to further control it, depending upon what scan results show going forward. I do perplex him, though, since I am a very unique case in his experience. I think he’s surprised that I am still alive… and looking so good.
Dr. Winthrop, who is a world renowned Infectious disease expert in what I’ve got, thinks I’m doing well. Sputum samples from July and November have been negative for pesky mycobacteria, but that does not mean I am through the woods. He still wants me on antibiotics at least a year after the first negative culture, probably longer.
Even though I feel really good, a parade of 14 pills passes my lips daily. Three antibiotics treat the NTM infection in my lungs (four pills and an inhaled dose via nebulizer). Three pills for my heart. Pills for mood, prostate, and thyroid. Three OTC pills.
Would you believe I was raised as a Christian Scientist? I attended Sunday school every week into my teenage years. I never had a shot nor a pill until I was 17. My first inoculation was when I started UCLA and smallpox vaccination was mandatory.
Eventually, when I started thinking for myself and developed a scientific perspective, I could just not believe the teachings of my religion any longer. However, I did gain two valuable insights from Christian Science which have stayed with me the rest of my life. First, an aversion for organized religion as it pertains to me personally. Second, a belief in the healing power of the mind, which I still use almost every day. Through most of my adult life I seldom took any medicines, though I did not eschew them altogether and I did have myself and my children vaccinated for various diseases.
I will expound at some later time about my spiritual beliefs. Suffice it to say just now that I do not worship a higher power in the conventional sense. I’ve been thinking a lot, too, about the meaning of life, death and the passing of ideas, traits and genes through generations. I’ll have something to say about that, too, if you are willing to listen.
You have all been such a wonderful support group for me over the last four years. My gratitude is boundless for your caring energy. I’d be happy to correspond or speak with anyone who wishes to contact me individually.
I have been having a wide ranging introspective discussion with myself lately relating to what I believe in and how it relates to my health. There’s a lot more than one blog post in my head, but many of you have encouraged me to continue my philosophical rambling, so I am. First of all, though, I feel great! A few symptoms. Chronic productive cough due to the damage in my lungs. Sporadic shortness of breath for the same reason, though advancing age is also a causative factor I’m sure. Swim workouts show me that my overall fitness has not diminished much, if at all, during the past year. The pace clock doesn’t lie!
Over the last two weeks I visited both my lung doctor and my local oncologist. Both were upbeat. Both told me that I “look good”, a very good sign, coming from them. Neither disease is cured, but both are momentarily under control.
According to Dr. Schmidt, the cancer in my lungs is “indolent”, meaning not doing much. No treatment just now, but probably something in the future to further control it, depending upon what scan results show going forward. I do perplex him, though, since I am a very unique case in his experience. I think he’s surprised that I am still alive… and looking so good.
Dr. Winthrop, who is a world renowned Infectious disease expert in what I’ve got, thinks I’m doing well. Sputum samples from July and November have been negative for pesky mycobacteria, but that does not mean I am through the woods. He still wants me on antibiotics at least a year after the first negative culture, probably longer.
Even though I feel really good, a parade of 14 pills passes my lips daily. Three antibiotics treat the NTM infection in my lungs (four pills and an inhaled dose via nebulizer). Three pills for my heart. Pills for mood, prostate, and thyroid. Three OTC pills.
Would you believe I was raised as a Christian Scientist? I attended Sunday school every week into my teenage years. I never had a shot nor a pill until I was 17. My first inoculation was when I started UCLA and smallpox vaccination was mandatory.
Eventually, when I started thinking for myself and developed a scientific perspective, I could just not believe the teachings of my religion any longer. However, I did gain two valuable insights from Christian Science which have stayed with me the rest of my life. First, an aversion for organized religion as it pertains to me personally. Second, a belief in the healing power of the mind, which I still use almost every day. Through most of my adult life I seldom took any medicines, though I did not eschew them altogether and I did have myself and my children vaccinated for various diseases.
I will expound at some later time about my spiritual beliefs. Suffice it to say just now that I do not worship a higher power in the conventional sense. I’ve been thinking a lot, too, about the meaning of life, death and the passing of ideas, traits and genes through generations. I’ll have something to say about that, too, if you are willing to listen.
You have all been such a wonderful support group for me over the last four years. My gratitude is boundless for your caring energy. I’d be happy to correspond or speak with anyone who wishes to contact me individually.
Four Year Voyage — Jan 8, 2019
When I have something to say I lie awake at night and ponder it, hoping to remember eloquent thoughts so I can pass them on to you. Then in the morning my head is empty. Old age, or just me? I’m sure a lot of you can relate. So… I’m starting fresh and letting thoughts cascade out of my brain anew.
There is no news of significance in this missive. If you’re looking for something concrete about my condition, stop reading right now because I’m going to treat (bore?) you with some philosophical rambling. I’m doing fine. I feel great. So far. I told you that no news would be good news, but that I might communicate when I have something good to expound upon. So here goes.
January 8, 2015. Four years ago today. An infamous date, as that was when I woke up from an endoscopy and received the news that the subtle symptoms I had been experiencing were in fact signs that cancer was active inside me. Not just any cancer, but esophageal cancer, which research soon told me is especially deadly; less than 20% five year survival rate. Suddenly I was faced with the possibility of my imminent demise. Heavy.
Yet, here I am still alive and enjoying life for the most part! The last four years have not been without health challenges, to say the least, but overcoming the challenges just makes the fact of being alive all the more sweet. Overall, I feel very lucky to be able to still experience life when many other patients that I met through the esophageal cancer (EC) grapevine are no longer with us.
Metastatic cancer and bacterial infections still reside in my lungs. There are a few symptoms, but nothing that detracts from my overall quality of life. Doctors are guardedly optimistic about being able to keep both under control even though they may not be able to cure them. No chemotherapy on the near horizon and we are waiting upon molecular analysis of my cancer to find out if immunotherapy treatment is an option going forward. Science has been making great strides in the latter, so there is reason for optimism.
We have a few months mostly free of treatment. Is this the calm before the storm? I’m not going to worry about it. I am not going to let it depress me; as long as I feel good, I’m going to just live my life and enjoy it as much as I can. I’m content to be home. Even though winter is a drag in many ways, it is still beautiful here. There are a few doctor appointments this month, but nothing significant in the big picture. Next month maybe we’ll go somewhere, but we have no plans at the moment. Mad, of course, is content here as long as there is snow for her to ski upon.
At one point when my dad was still alive but in his 80’s, he told me that he was unafraid of dying. Of course, every human being has to face up to this eventuality, but it is something I had feared for much of my life. I could not understand it then, but now I do. Four years ago I had to face up to the fact that the vital life force that is Tom might be snuffed out. I found then that I was sad, but not afraid. When faced with the inevitable, I was no longer afraid… weird?
I am profoundly grateful for the last four years. I am not afraid of what is to come. How much longer do I have? Two years… ten? However long it is, I’m going to live it to the hilt and be grateful for it. And what is living to the hilt? It’s loving. Loving home, loving nature, loving my wife and family, loving all my friends.
Wow. You have joined me on a rambling philosophical jaunt. No news, except some insight about what’s going on in my head. Ta ta for now and thanks for “listening”.
When I have something to say I lie awake at night and ponder it, hoping to remember eloquent thoughts so I can pass them on to you. Then in the morning my head is empty. Old age, or just me? I’m sure a lot of you can relate. So… I’m starting fresh and letting thoughts cascade out of my brain anew.
There is no news of significance in this missive. If you’re looking for something concrete about my condition, stop reading right now because I’m going to treat (bore?) you with some philosophical rambling. I’m doing fine. I feel great. So far. I told you that no news would be good news, but that I might communicate when I have something good to expound upon. So here goes.
January 8, 2015. Four years ago today. An infamous date, as that was when I woke up from an endoscopy and received the news that the subtle symptoms I had been experiencing were in fact signs that cancer was active inside me. Not just any cancer, but esophageal cancer, which research soon told me is especially deadly; less than 20% five year survival rate. Suddenly I was faced with the possibility of my imminent demise. Heavy.
Yet, here I am still alive and enjoying life for the most part! The last four years have not been without health challenges, to say the least, but overcoming the challenges just makes the fact of being alive all the more sweet. Overall, I feel very lucky to be able to still experience life when many other patients that I met through the esophageal cancer (EC) grapevine are no longer with us.
Metastatic cancer and bacterial infections still reside in my lungs. There are a few symptoms, but nothing that detracts from my overall quality of life. Doctors are guardedly optimistic about being able to keep both under control even though they may not be able to cure them. No chemotherapy on the near horizon and we are waiting upon molecular analysis of my cancer to find out if immunotherapy treatment is an option going forward. Science has been making great strides in the latter, so there is reason for optimism.
We have a few months mostly free of treatment. Is this the calm before the storm? I’m not going to worry about it. I am not going to let it depress me; as long as I feel good, I’m going to just live my life and enjoy it as much as I can. I’m content to be home. Even though winter is a drag in many ways, it is still beautiful here. There are a few doctor appointments this month, but nothing significant in the big picture. Next month maybe we’ll go somewhere, but we have no plans at the moment. Mad, of course, is content here as long as there is snow for her to ski upon.
At one point when my dad was still alive but in his 80’s, he told me that he was unafraid of dying. Of course, every human being has to face up to this eventuality, but it is something I had feared for much of my life. I could not understand it then, but now I do. Four years ago I had to face up to the fact that the vital life force that is Tom might be snuffed out. I found then that I was sad, but not afraid. When faced with the inevitable, I was no longer afraid… weird?
I am profoundly grateful for the last four years. I am not afraid of what is to come. How much longer do I have? Two years… ten? However long it is, I’m going to live it to the hilt and be grateful for it. And what is living to the hilt? It’s loving. Loving home, loving nature, loving my wife and family, loving all my friends.
Wow. You have joined me on a rambling philosophical jaunt. No news, except some insight about what’s going on in my head. Ta ta for now and thanks for “listening”.
