2020 Blog Posts
April 14
You and Me In the Same Boat. Cherishing Life!
Yesterday was my 78th birthday. We celebrated with food, dancing and sex. No presents; what do you get for a 78 year old man who has everything? My first experience with Zoom was a birthday gathering with 14 family members sequestered in six different locations. Gratifying and fun; I’m so grateful for family, even if I don’t get to see them in person.
As for myself, at this moment, I feel great! Only the normal complaints of an old man accompany the mild and manageable symptoms of my “comorbidities”. I have sequestered myself at home with Mad since March 13th, and, honestly, my life has not changed that much. I feel very fortunate in this respect, compared to the incredible disruption the pandemic has caused in the lives of so many. We were isolated already, with few neighbors, and those staying out of sight. If we want exercise, we can walk out the door into the forest and not see anyone for hours. We avoid the river trails on weekends, but on weekdays there are few people out there to avoid. I miss swimming and sports on TV. I miss being able to go to the market any time I want for ice cream. I’d like to go on a road trip to visit family and friends. I’d like to go on a cruise to see a new part of the world. And on and on… All things considered, though, whatever discontent I may feel inconsequential.
While Mad was reading an article to me about how doctors are coping with the unbelievably terrifying situation in New York City hospitals, the term “comorbidity” came up. “What’s that” I wondered? It turns out they are underlying conditions in addition to the one being treated. “Wow, do I know comorbiditiies!”
If I were to go into the ER with Covid, they will look at my chart and, first, marvel at my comorbidities. They they will shake their heads at the prospect of trying to save someone with cancer, lung disease and heart disease in addition to the virus. In triage, I suspect I will go to the end of the list, in spite of the fact that, outwardly, I seem quite fit.
For several years now I have had the specter of life threatening health conditions hanging over me. Now we are in the same boat. Not that I would wish the present disease catastrophe upon anyone, certainly not, but I am definitely not as unique anymore.
Am I worried? Somewhat. Am I afraid? No. I’ve had five years to come to terms with the inevitablity of death and, in my mind, I’ve already been cheating the grim reaper for quite some time. As I’ve told you often before, every new day is a gift for me. I trust that, in the light of the current crisis, many of you are thinking the same thing… in the same boat, so to speak.
Last week I was supposed to have my latest monitoring CT scan to see what’s happening with cancer and NTM in my lungs. Needless to say it did not happen. Therefore, I have nothing of substance to convey to you all regarding my health struggles except that I feel fine. I’ve been rescheduled to go up to Portland on May 20th. Will that occur? Who knows? So far Oregon has not been hit as hard as other parts of the country, so we are crossing our fingers that things will have calmed down enough by then that I can circulate in society.
I have been playing around with the idea of resurrecting my personal web site, [email protected]. I used it to communicate with my hiking and swimming friends, to share workout thoughts and hiking pictures. After I was diagnosed with cancer I stopped posting to that site and have not since. I’m thinking now it might be a good way to blog about “just things” that I don’t want to clog Caring Bridge with, but that I think people might be interested in. It’s still a work in progress; I’ll let you know when things are up and running. Right now I’m moving my Caring Bridge posts over and figuring out how the blog function works so we can communicate back land forth.
Be well my friends…. and, for the sake of those of us with comorbids, Isolate, Isolate, Isolate!!!
February 14
Happy Doctors... Happy Patient
I’ve seen a lot of medical professionals in the last ten days. My dermatologist (Carter) is happy that I don’t have any skin cancers. My original surgeon (Hunter) is happy, just because. My ear doctor (Hullar) is happy because last month’s operation was successful. Both oncologists (Schmidt & Lopez) are overjoyed that my recent CT shows the tumors in my lungs are stable. My infectious disease specialist (Winthrop) says I’m doing great, even though I have to take yet another new pill, for 12 days, to knock down the pseudomonas. My dentist (Hodgert) is happy because I am spending a lot of money on my mouth (since my long term prospects are now better!) Our GP (Fan), Madeleine’s XC ski pal, is happy because a patient (and friend) whom she has been following for over ten years is still hanging in there.
You have had a window into my mind for over five years. I have tried to be as open and honest as possible about my cancer battle and other health issues. My main purpose has been to inform my family, friends and acquaintances about what’s going on so I don’t have to have multiple conversations about it. The blog has grown beyond my original purpose, often becoming a two way dialog. You have inspired me and Madeleine with your interest and caring energy. And I have learned that I can inspire you by expounding upon the ways I deal with difficult, life threatening diseases, and, generally, the process of aging.
As I lay in bed this morning, my mind wandering here and there, I came to the realization that I have reached an important juncture with you, my “public”. I’ve reached a point where there’s not a whole lot to say in regard to my health as it relates to life threatening issues. Sure, my once invincible body is now rife with health problems and I am in an ongoing conversation within my own mind about what it all means in the context of aging. What’s going on in my head is of course interesting to me, but I’m not so sure it is still relevant to the original purpose of this blog/tome.
The last ten days or so have been pivotal in my internal debate because I have had meetings with all my doctors… and there are lots of them. Cancer, lungs, ears, teeth… on and on seemingly ad infinitum. I need to find a new cardiologist too… But I realize I have come to a turning point. My cancer is not going away, neither is my lung disease, but both have stabilized to a significant degree. Dr. Schmidt summarized it all Monday when he said “You’re amazing, man! You’ll probably die from being hit by a bus or a tree falling on you in Camp Sherman, rather than from cancer!”
It’s great to know that I am not going to die any time soon, that something other than cancer or lung disease may eventually get me. There are so many good things about life, even though I am impaired in some ways, that the prospect of many more years is just so very sweet.
This leaves me in a quandary about what to do about you. You have inspired me and I have been surprised by how much I have been able to inspire so many of you. Where do I go from here with this long running conversation we have been having, now that my health issues seem to be stabilizing? There’s not a whole lot I have to say anymore other than “more of the same old same old”. And do you really want to hear that? Has the blog become superfluous?
I need some guidance here. Is there any point to my expounding further? If so, what you want to hear? Ask me questions. Tell me what parts of life and aging you’d like to hear my thoughts about. This is my dilemma: “do they really want to hear me opine mundane issues of health and aging that I, along with everyone else, struggle with?” If there is not much more for me to say, I’ll keep the Caring Bridge site “active but dormant”, in case something unforeseen happens. Let me know what you think by writing in the comments, or contact me directly, thanks!
January 9th
Five Years of Cheating Death
Five years ago today we received the shocking, unbelievable, incomprehensible news that the soreness and pressure I was feeling deep in my chest was esophageal cancer. Since then, a lot of shocking, unbelievable and incomprehensible things have happened, the most noteworthy of which is that I am still alive! Then, I suspected that my death was imminent, even though I could not believe that I would die. That’s the age old conflict between rational reasoning and emotional reaction. Then they told us we would have to wait a week for an oncology appointment. “What? Death may be on the near horizon and they want me to wait a week to find out what’s going on?” So… rather than mope around in the frozen fog of Oregon (no snow that year) we booked a quick four day cancer-cation to Maui. Better to grieve an uncertain future in warm air and warm water, eh? To say the least, a lot of tears were shed and a lot of soul searching went on.
When finally I met with Dr. Bill Schmidt, my first oncologist, he informed us that he had studied my case and referred me on to a team of crack surgeons at OHSU up in Portland. Thus I received a new lease on life, not the imminent demise I had envisioned. They agreed that an esophagectomy might effectively prolong my life. Thus, I entered the cancer pipeline that has led to five years of medical ups and downs, but most importantly, of life.
Don’t feel sorry for me, for what I’ve been through. I feel great. And having lived, the last five years has been a wild adventure, one I would not wish upon anyone, but just the same, one that makes the present all the sweeter.
Here it is in a nutshell, so you don’t have to go back and read the whole blog. 2015: discovery of cancer; chemotherapy and radiation reduce the tumor preparatory to surgery; two months of rest to gird for surgery. Surgery (May ’15); vexing complications keep me in the hospital many extra weeks. Eight months later (Jan ’16) diaphragmatic hernia, (another complication of original surgery & maybe doing too much…) necessitates emergency air evacuation to Portland and emergency surgery. Mad’s mom dies while I’m in the ICU. Six months later (summer ’16), cancer returns, having metastasized to my lung; single tumor removed, necessitating removal of part of my lung. Subsequent CTs show no recurrence for two years. Diagnosed in spring ’18 with NTM (non tuberculosis mycobacterium). CT detects metastases in my lungs (Sep ’18) necessitating biopsy in November for genetic study. Surgical complications necessitate readmission (again). CT’s show tumors indolent, not growing; strategy becomes wait and watch for a whole year. Next CT (Sep ’19) shows one tumor growing a bit faster. Start targeted oral chemotherapy (Tarceva) in Oct '19 and be in ‘clinical trial of one’ for my OSHU oncologist Dr Charlie Lopez.
And… you know the rest from the last few posts—tumors already shrinking!
So much for history. Sunday we go up to Portland to get my right ear fixed (canaloplasty). It will be nice once again to be able to hear out of it.
Early next month we go for my next CT scan and are hopefully optimistic that it will show further tumor shrinkage due to the medication I am taking. Ear doctor will examine his work and hopefully give me clearance to swim. Then, if all the stars align, we will be off to somewhere tropical for a while. So, a lot should come together in mid February and I will let you know what’s happening then. Thanks for five years of support from both of us!
You and Me In the Same Boat. Cherishing Life!
Yesterday was my 78th birthday. We celebrated with food, dancing and sex. No presents; what do you get for a 78 year old man who has everything? My first experience with Zoom was a birthday gathering with 14 family members sequestered in six different locations. Gratifying and fun; I’m so grateful for family, even if I don’t get to see them in person.
As for myself, at this moment, I feel great! Only the normal complaints of an old man accompany the mild and manageable symptoms of my “comorbidities”. I have sequestered myself at home with Mad since March 13th, and, honestly, my life has not changed that much. I feel very fortunate in this respect, compared to the incredible disruption the pandemic has caused in the lives of so many. We were isolated already, with few neighbors, and those staying out of sight. If we want exercise, we can walk out the door into the forest and not see anyone for hours. We avoid the river trails on weekends, but on weekdays there are few people out there to avoid. I miss swimming and sports on TV. I miss being able to go to the market any time I want for ice cream. I’d like to go on a road trip to visit family and friends. I’d like to go on a cruise to see a new part of the world. And on and on… All things considered, though, whatever discontent I may feel inconsequential.
While Mad was reading an article to me about how doctors are coping with the unbelievably terrifying situation in New York City hospitals, the term “comorbidity” came up. “What’s that” I wondered? It turns out they are underlying conditions in addition to the one being treated. “Wow, do I know comorbiditiies!”
If I were to go into the ER with Covid, they will look at my chart and, first, marvel at my comorbidities. They they will shake their heads at the prospect of trying to save someone with cancer, lung disease and heart disease in addition to the virus. In triage, I suspect I will go to the end of the list, in spite of the fact that, outwardly, I seem quite fit.
For several years now I have had the specter of life threatening health conditions hanging over me. Now we are in the same boat. Not that I would wish the present disease catastrophe upon anyone, certainly not, but I am definitely not as unique anymore.
Am I worried? Somewhat. Am I afraid? No. I’ve had five years to come to terms with the inevitablity of death and, in my mind, I’ve already been cheating the grim reaper for quite some time. As I’ve told you often before, every new day is a gift for me. I trust that, in the light of the current crisis, many of you are thinking the same thing… in the same boat, so to speak.
Last week I was supposed to have my latest monitoring CT scan to see what’s happening with cancer and NTM in my lungs. Needless to say it did not happen. Therefore, I have nothing of substance to convey to you all regarding my health struggles except that I feel fine. I’ve been rescheduled to go up to Portland on May 20th. Will that occur? Who knows? So far Oregon has not been hit as hard as other parts of the country, so we are crossing our fingers that things will have calmed down enough by then that I can circulate in society.
I have been playing around with the idea of resurrecting my personal web site, [email protected]. I used it to communicate with my hiking and swimming friends, to share workout thoughts and hiking pictures. After I was diagnosed with cancer I stopped posting to that site and have not since. I’m thinking now it might be a good way to blog about “just things” that I don’t want to clog Caring Bridge with, but that I think people might be interested in. It’s still a work in progress; I’ll let you know when things are up and running. Right now I’m moving my Caring Bridge posts over and figuring out how the blog function works so we can communicate back land forth.
Be well my friends…. and, for the sake of those of us with comorbids, Isolate, Isolate, Isolate!!!
February 14
Happy Doctors... Happy Patient
I’ve seen a lot of medical professionals in the last ten days. My dermatologist (Carter) is happy that I don’t have any skin cancers. My original surgeon (Hunter) is happy, just because. My ear doctor (Hullar) is happy because last month’s operation was successful. Both oncologists (Schmidt & Lopez) are overjoyed that my recent CT shows the tumors in my lungs are stable. My infectious disease specialist (Winthrop) says I’m doing great, even though I have to take yet another new pill, for 12 days, to knock down the pseudomonas. My dentist (Hodgert) is happy because I am spending a lot of money on my mouth (since my long term prospects are now better!) Our GP (Fan), Madeleine’s XC ski pal, is happy because a patient (and friend) whom she has been following for over ten years is still hanging in there.
You have had a window into my mind for over five years. I have tried to be as open and honest as possible about my cancer battle and other health issues. My main purpose has been to inform my family, friends and acquaintances about what’s going on so I don’t have to have multiple conversations about it. The blog has grown beyond my original purpose, often becoming a two way dialog. You have inspired me and Madeleine with your interest and caring energy. And I have learned that I can inspire you by expounding upon the ways I deal with difficult, life threatening diseases, and, generally, the process of aging.
As I lay in bed this morning, my mind wandering here and there, I came to the realization that I have reached an important juncture with you, my “public”. I’ve reached a point where there’s not a whole lot to say in regard to my health as it relates to life threatening issues. Sure, my once invincible body is now rife with health problems and I am in an ongoing conversation within my own mind about what it all means in the context of aging. What’s going on in my head is of course interesting to me, but I’m not so sure it is still relevant to the original purpose of this blog/tome.
The last ten days or so have been pivotal in my internal debate because I have had meetings with all my doctors… and there are lots of them. Cancer, lungs, ears, teeth… on and on seemingly ad infinitum. I need to find a new cardiologist too… But I realize I have come to a turning point. My cancer is not going away, neither is my lung disease, but both have stabilized to a significant degree. Dr. Schmidt summarized it all Monday when he said “You’re amazing, man! You’ll probably die from being hit by a bus or a tree falling on you in Camp Sherman, rather than from cancer!”
It’s great to know that I am not going to die any time soon, that something other than cancer or lung disease may eventually get me. There are so many good things about life, even though I am impaired in some ways, that the prospect of many more years is just so very sweet.
This leaves me in a quandary about what to do about you. You have inspired me and I have been surprised by how much I have been able to inspire so many of you. Where do I go from here with this long running conversation we have been having, now that my health issues seem to be stabilizing? There’s not a whole lot I have to say anymore other than “more of the same old same old”. And do you really want to hear that? Has the blog become superfluous?
I need some guidance here. Is there any point to my expounding further? If so, what you want to hear? Ask me questions. Tell me what parts of life and aging you’d like to hear my thoughts about. This is my dilemma: “do they really want to hear me opine mundane issues of health and aging that I, along with everyone else, struggle with?” If there is not much more for me to say, I’ll keep the Caring Bridge site “active but dormant”, in case something unforeseen happens. Let me know what you think by writing in the comments, or contact me directly, thanks!
January 9th
Five Years of Cheating Death
Five years ago today we received the shocking, unbelievable, incomprehensible news that the soreness and pressure I was feeling deep in my chest was esophageal cancer. Since then, a lot of shocking, unbelievable and incomprehensible things have happened, the most noteworthy of which is that I am still alive! Then, I suspected that my death was imminent, even though I could not believe that I would die. That’s the age old conflict between rational reasoning and emotional reaction. Then they told us we would have to wait a week for an oncology appointment. “What? Death may be on the near horizon and they want me to wait a week to find out what’s going on?” So… rather than mope around in the frozen fog of Oregon (no snow that year) we booked a quick four day cancer-cation to Maui. Better to grieve an uncertain future in warm air and warm water, eh? To say the least, a lot of tears were shed and a lot of soul searching went on.
When finally I met with Dr. Bill Schmidt, my first oncologist, he informed us that he had studied my case and referred me on to a team of crack surgeons at OHSU up in Portland. Thus I received a new lease on life, not the imminent demise I had envisioned. They agreed that an esophagectomy might effectively prolong my life. Thus, I entered the cancer pipeline that has led to five years of medical ups and downs, but most importantly, of life.
Don’t feel sorry for me, for what I’ve been through. I feel great. And having lived, the last five years has been a wild adventure, one I would not wish upon anyone, but just the same, one that makes the present all the sweeter.
Here it is in a nutshell, so you don’t have to go back and read the whole blog. 2015: discovery of cancer; chemotherapy and radiation reduce the tumor preparatory to surgery; two months of rest to gird for surgery. Surgery (May ’15); vexing complications keep me in the hospital many extra weeks. Eight months later (Jan ’16) diaphragmatic hernia, (another complication of original surgery & maybe doing too much…) necessitates emergency air evacuation to Portland and emergency surgery. Mad’s mom dies while I’m in the ICU. Six months later (summer ’16), cancer returns, having metastasized to my lung; single tumor removed, necessitating removal of part of my lung. Subsequent CTs show no recurrence for two years. Diagnosed in spring ’18 with NTM (non tuberculosis mycobacterium). CT detects metastases in my lungs (Sep ’18) necessitating biopsy in November for genetic study. Surgical complications necessitate readmission (again). CT’s show tumors indolent, not growing; strategy becomes wait and watch for a whole year. Next CT (Sep ’19) shows one tumor growing a bit faster. Start targeted oral chemotherapy (Tarceva) in Oct '19 and be in ‘clinical trial of one’ for my OSHU oncologist Dr Charlie Lopez.
And… you know the rest from the last few posts—tumors already shrinking!
So much for history. Sunday we go up to Portland to get my right ear fixed (canaloplasty). It will be nice once again to be able to hear out of it.
Early next month we go for my next CT scan and are hopefully optimistic that it will show further tumor shrinkage due to the medication I am taking. Ear doctor will examine his work and hopefully give me clearance to swim. Then, if all the stars align, we will be off to somewhere tropical for a while. So, a lot should come together in mid February and I will let you know what’s happening then. Thanks for five years of support from both of us!
Remember Chomper? He's the cancer eating piranha Tom visualizes, that our friend John Simpkins drew the day of Tom's first PET scan when we knew the cancer wasn't everywhere & he was on the path to surgery, not palliative care.
In spite of how tragic we were feeling, we still managed to have some good times.
It was all a bit surreal.
The last time Tom bodysurfed.
He was strongly advised not to get tumbled around after the esophageal hernia repair by Dr. Dolan who led the 4am emergency surgery after 4 bad days in Bend hospital & midnight airlife flight to OSHU...
Looking back on the last 5 challenging years, we're grateful for friends old and new, family, and doctors, nurses & caregivers of all kinds.
We're certainly happier now than we were 5 years ago tonight!
For all you swim friends out there, at least Tom can still swim! He reports today he had a particularly good workout of 1500 yds :) He'll be out of the water for at least 3 weeks after canaloplasty so he'll have to join me for land based workouts.
For all you swim friends out there, at least Tom can still swim! ...
