2016 Blog Posts
An Anniversary of Note — Jan 8, 2016
One year ago today my life turned upside down. Dr. Henderson, the local GI guy, after performing the upper endoscopy, informs me: “You have a tumor in your esophagus that we must assume is malignant”. Subsequent tests confirmed the diagnosis. And thus began the difficult yearlong journey that has led me to where I am now.
A year ago, upon researching the disease, I learned what a killer esophageal cancer is. Suddenly I was dealing with the distinct possibility of my imminent demise. Today, as far as the doctors can ascertain, I am cancer free. I feel very, very fortunate!
2015 was a bad year for Madeleine and me. However, through the miracle of modern medical science and the care of some incredibly skilled doctors, we can look forward to much, much better in 2016 and beyond. Hopefully there are many years beyond, but to me every day is now a gift to be cherished.
My first Caring Bridge journal entry was on January 26th of last year. Whether you have been with me from the beginning or came on board later, I appreciate more than you can imagine all of your comments and support. As I have said before, the outpouring of caring energy that has come my way is an unanticipated “benefit” of having cancer. Thank you, thank you, one and all… from the bottom of my heart, for accompanying me on this journey!
If you do not hear much more from me, you will know I am doing well. My strength and fitness are returning slowly. I plan to be once again backpacking, surfing and competing by next summer.
If you want to contact me for any reason, I’d look forward to it. I’m always open to communication via email, phone or in person. I may even post now and then on Facebook, so friend me if you want. Don’t hold your breath, though, as my last entry was May 18th.
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Happy New Year from me, Madeleine, too! To follow up briefly on Tom's vocal cord issues, at his recent appt with the laryngologist last week we learned that it could take up to 6 months for his voice to arrive at his new normal, and it won't be his old normal. That was good to know because at 7 weeks he is still experiencing a different voice by the hour. He can be gravelly, breathy, high, low... so it's always interesting when he starts to speak. He's swallowing better and it could still improve from healing around the implant as we saw from the video camera in his throat. Basically he has one functioning vocal cord nerve so he is still doing interesting voice exercises from a speech pathologist. We never could have imagined a year ago that this would be an issue after all the other stuff, but he is in the 1% of people who have this collateral damage after an esophagectomy. That and the infamous chyle leak... but he's here and happy and swimming and that is what's important. He is still learning how much and how often to eat but I think a food journal is helping.
I'm about to leave for Chico next week as my mother is now under hospice care. A year and a half of watching her succumb to dementia has been very difficult so I will be relieved when her suffering, and our family's, is over. I am so grateful for the help I've had down there while caring for Tom up here, and that I could be home the last 3 weeks as the foot of snow is still powdery from the very cold temperatures. There are ski trails everywhere and I've basically been skiing for hours every day. Self care indeed! Heartfelt thanks to all our new and old friends for supporting me too... it was quite a year.
One year ago today my life turned upside down. Dr. Henderson, the local GI guy, after performing the upper endoscopy, informs me: “You have a tumor in your esophagus that we must assume is malignant”. Subsequent tests confirmed the diagnosis. And thus began the difficult yearlong journey that has led me to where I am now.
A year ago, upon researching the disease, I learned what a killer esophageal cancer is. Suddenly I was dealing with the distinct possibility of my imminent demise. Today, as far as the doctors can ascertain, I am cancer free. I feel very, very fortunate!
2015 was a bad year for Madeleine and me. However, through the miracle of modern medical science and the care of some incredibly skilled doctors, we can look forward to much, much better in 2016 and beyond. Hopefully there are many years beyond, but to me every day is now a gift to be cherished.
My first Caring Bridge journal entry was on January 26th of last year. Whether you have been with me from the beginning or came on board later, I appreciate more than you can imagine all of your comments and support. As I have said before, the outpouring of caring energy that has come my way is an unanticipated “benefit” of having cancer. Thank you, thank you, one and all… from the bottom of my heart, for accompanying me on this journey!
If you do not hear much more from me, you will know I am doing well. My strength and fitness are returning slowly. I plan to be once again backpacking, surfing and competing by next summer.
If you want to contact me for any reason, I’d look forward to it. I’m always open to communication via email, phone or in person. I may even post now and then on Facebook, so friend me if you want. Don’t hold your breath, though, as my last entry was May 18th.
----------------------------
Happy New Year from me, Madeleine, too! To follow up briefly on Tom's vocal cord issues, at his recent appt with the laryngologist last week we learned that it could take up to 6 months for his voice to arrive at his new normal, and it won't be his old normal. That was good to know because at 7 weeks he is still experiencing a different voice by the hour. He can be gravelly, breathy, high, low... so it's always interesting when he starts to speak. He's swallowing better and it could still improve from healing around the implant as we saw from the video camera in his throat. Basically he has one functioning vocal cord nerve so he is still doing interesting voice exercises from a speech pathologist. We never could have imagined a year ago that this would be an issue after all the other stuff, but he is in the 1% of people who have this collateral damage after an esophagectomy. That and the infamous chyle leak... but he's here and happy and swimming and that is what's important. He is still learning how much and how often to eat but I think a food journal is helping.
I'm about to leave for Chico next week as my mother is now under hospice care. A year and a half of watching her succumb to dementia has been very difficult so I will be relieved when her suffering, and our family's, is over. I am so grateful for the help I've had down there while caring for Tom up here, and that I could be home the last 3 weeks as the foot of snow is still powdery from the very cold temperatures. There are ski trails everywhere and I've basically been skiing for hours every day. Self care indeed! Heartfelt thanks to all our new and old friends for supporting me too... it was quite a year.
Bad Happenings — Jan 25, 2016
Mad's wonderful mother, Helga, passed away this morning after a long bout with progressive dementia, so we are dealing with that. Unfortunately, Mad could not be there with her because I am back in the hospital recovering from a serious emergency abdominal surgery and she had to stay with me. They sent me over here to Portland on an air ambulance early Friday morning and operated soon after I got here. This is not the time to going into all the details, however, except to say that I am doing fine.
Mad insists that I send some pictures along with this blog, so feast your eyes below. She will fill out the nuance at some future date when she's in a better emotional space.
Mad's wonderful mother, Helga, passed away this morning after a long bout with progressive dementia, so we are dealing with that. Unfortunately, Mad could not be there with her because I am back in the hospital recovering from a serious emergency abdominal surgery and she had to stay with me. They sent me over here to Portland on an air ambulance early Friday morning and operated soon after I got here. This is not the time to going into all the details, however, except to say that I am doing fine.
Mad insists that I send some pictures along with this blog, so feast your eyes below. She will fill out the nuance at some future date when she's in a better emotional space.
Discharged, Heading Home — Jan 27, 2016
I was discharged from OHSU hospital yesterday. This followed a late night emergency flight from Bend to Portland on Thursday, surgery early Friday morning, a few days in the ICU and a few days in my old haunt, Kohler 13, where I had spent so much time last summer.
We are in Portland now, but heading home tomorrow. Our hotel is right on the river and offers a beautiful, serene view. It is a very peaceful place to come post surgery and for Mad to spend time while she waiting around for me to recover in the hospital. I feel weak but otherwise pretty good. Today provided a brief fair weather window, so we took the grand circuit streetcar tour of Portland just to get out and have some fun. Walking more than a few blocks tires me mightily, but that will soon be changing as my recovery progresses. It will be really great to get back home!
Thanks again to everyone for your kind thoughts and caring energy. Today my caring energy is going out to my long time friend, Bob Nealy, who is having his bone marrow transplant today. Good luck Bob!
I was discharged from OHSU hospital yesterday. This followed a late night emergency flight from Bend to Portland on Thursday, surgery early Friday morning, a few days in the ICU and a few days in my old haunt, Kohler 13, where I had spent so much time last summer.
We are in Portland now, but heading home tomorrow. Our hotel is right on the river and offers a beautiful, serene view. It is a very peaceful place to come post surgery and for Mad to spend time while she waiting around for me to recover in the hospital. I feel weak but otherwise pretty good. Today provided a brief fair weather window, so we took the grand circuit streetcar tour of Portland just to get out and have some fun. Walking more than a few blocks tires me mightily, but that will soon be changing as my recovery progresses. It will be really great to get back home!
Thanks again to everyone for your kind thoughts and caring energy. Today my caring energy is going out to my long time friend, Bob Nealy, who is having his bone marrow transplant today. Good luck Bob!
Back to Portland... again and again — Feb 29, 2016
First of all, before I get into anything else, let me tell you that I feel pretty good. I am recovering from my recent surgery and gaining strength and vitality slowly but steadily. The doctors won't let me lift heavy objects, exercise aerobically, or swim. But they do want me to walk, which I am doing regularly. My arms and legs look like sticks with flesh hanging off of them, but I look forward to sometime in the future gaining back that muscle mass. Complications keep getting in the way, however.
We head back to Portland tomorrow; it's becoming a commute. It seems like we just got home from there. Wednesday I have another operation to fix my voice, as the first thyroplasty failed. My voice is back to a hoarse squeak, (Mad says its sexy...) but the surgeon, Dr. Flint, says that the second time around the procedure should be much more successful. I only have one night to stay in the hospital after this surgery, which seems like a lark comparatively. Thursday's our anniversary & so by resting all day, we hope to hear Mel Brown at Jimmy Maks. Then Friday evening we are attending a dinner for the doctors, researchers, & survivors of esophageal cancer put on by my principal surgeon, Dr. Hunter and the Western Esophageal Cancer Awareness Network (WE-CAN). It will be interesting to be together with others who have been down the same road, though I doubt many have seen as many complications as I have while traveling it.
As you already know from my last post, Mad's mom passed away on January 25th, while I was in the hospital recovering from surgery. Her memorial service was in Chico a week ago Saturday. It was beautiful and I am glad I could make the trip, as I had been having some health issues prior. Right after the service we blasted north to Portland for a full schedule of doctor appointments last week.
The best news is that my CT scan showed no recurrence of cancer. At the same conference with Dr. Hunter, we were able to discuss my more recent surgery and what the incarcerated hernia means for me going forward. I won't go into detail on that, but just say that it will impact my life in the future. These hernias tend to occur more often in people who carry on a very active lifestyle. I'll have to be a lot more careful about lifting heavy objects. Too, I may have to tone down the single minded zeal with which I pursue some of my other interests, such as surfing, backpacking and competitive swimming.
But that's not all. I have been experiencing episodes of atrial tachycardia. What? A heart issue? What else could happen to complicate things further, to make me suffer visits to even more doctors? So, we had to stay in Portland until Friday last, which was the first appointment I could get with an electrophysiologist. What? Oh... that's a doc who specializes in the electrical system of the heart. My cardiologist in Bend, who cleared me to travel down to California said, "I'm just a plumber. You need to see an electrician." Neither heart specialist could determine why my sporadic episodes of rapid heartbeat (my pulse rate shoots up to 140 or so for a while, then drops back down into the 60's). It may be a complication of my recent surgery and will go away... maybe not. They can't put me on medicine that lowers my overall heart rate because my normal resting heart rate is already so low (55 when I got up this morning). Young Dr. Dewland says it is not particularly serious nor life threatening. Watchful waiting is the treatment for the near future. "if it climbs over 100 and stays there continually for a day or two, come back and see me. Otherwise, let's just see what happens with time."
But that's not all. When they were investigating the tachycardia, blood tests showed that my thyroid function is low. Another complication? Gee whiz! My personal physician, Dr. Fan is working on this issue, which, again, while not that serious, is of unknown origin and as such, is vexing.
Damn. I am really looking forward to the day when I don't have doctor appointments all over my calendar. But.... every day I wake up and am really glad to be alive, to marvel at the natural world around me and bask in the love of beautiful, supportive Maddie.
First of all, before I get into anything else, let me tell you that I feel pretty good. I am recovering from my recent surgery and gaining strength and vitality slowly but steadily. The doctors won't let me lift heavy objects, exercise aerobically, or swim. But they do want me to walk, which I am doing regularly. My arms and legs look like sticks with flesh hanging off of them, but I look forward to sometime in the future gaining back that muscle mass. Complications keep getting in the way, however.
We head back to Portland tomorrow; it's becoming a commute. It seems like we just got home from there. Wednesday I have another operation to fix my voice, as the first thyroplasty failed. My voice is back to a hoarse squeak, (Mad says its sexy...) but the surgeon, Dr. Flint, says that the second time around the procedure should be much more successful. I only have one night to stay in the hospital after this surgery, which seems like a lark comparatively. Thursday's our anniversary & so by resting all day, we hope to hear Mel Brown at Jimmy Maks. Then Friday evening we are attending a dinner for the doctors, researchers, & survivors of esophageal cancer put on by my principal surgeon, Dr. Hunter and the Western Esophageal Cancer Awareness Network (WE-CAN). It will be interesting to be together with others who have been down the same road, though I doubt many have seen as many complications as I have while traveling it.
As you already know from my last post, Mad's mom passed away on January 25th, while I was in the hospital recovering from surgery. Her memorial service was in Chico a week ago Saturday. It was beautiful and I am glad I could make the trip, as I had been having some health issues prior. Right after the service we blasted north to Portland for a full schedule of doctor appointments last week.
The best news is that my CT scan showed no recurrence of cancer. At the same conference with Dr. Hunter, we were able to discuss my more recent surgery and what the incarcerated hernia means for me going forward. I won't go into detail on that, but just say that it will impact my life in the future. These hernias tend to occur more often in people who carry on a very active lifestyle. I'll have to be a lot more careful about lifting heavy objects. Too, I may have to tone down the single minded zeal with which I pursue some of my other interests, such as surfing, backpacking and competitive swimming.
But that's not all. I have been experiencing episodes of atrial tachycardia. What? A heart issue? What else could happen to complicate things further, to make me suffer visits to even more doctors? So, we had to stay in Portland until Friday last, which was the first appointment I could get with an electrophysiologist. What? Oh... that's a doc who specializes in the electrical system of the heart. My cardiologist in Bend, who cleared me to travel down to California said, "I'm just a plumber. You need to see an electrician." Neither heart specialist could determine why my sporadic episodes of rapid heartbeat (my pulse rate shoots up to 140 or so for a while, then drops back down into the 60's). It may be a complication of my recent surgery and will go away... maybe not. They can't put me on medicine that lowers my overall heart rate because my normal resting heart rate is already so low (55 when I got up this morning). Young Dr. Dewland says it is not particularly serious nor life threatening. Watchful waiting is the treatment for the near future. "if it climbs over 100 and stays there continually for a day or two, come back and see me. Otherwise, let's just see what happens with time."
But that's not all. When they were investigating the tachycardia, blood tests showed that my thyroid function is low. Another complication? Gee whiz! My personal physician, Dr. Fan is working on this issue, which, again, while not that serious, is of unknown origin and as such, is vexing.
Damn. I am really looking forward to the day when I don't have doctor appointments all over my calendar. But.... every day I wake up and am really glad to be alive, to marvel at the natural world around me and bask in the love of beautiful, supportive Maddie.
A New Voice... Again — Mar 12, 2016
A stormy Saturday afternoon. Mad is nordic skiing up at Hoodoo, our nearby ski area. I just got in from a three mile forest walk. There is no snow left on the ground, but it was snowing off and on during the hike... beautiful. I can feel some modicum of fitness returning, though very slowly. We've been home for a week now, after what seems, looking back, like weeks of peripatetic traveling. Only one doctor appointment this week, in Bend.
When last we were in Portland, as I mention in my last missive, I had another medialization thyroplasty to repair my left vocal cord. After only a few days at home from our last Portland visit, we headed back up there on Tuesday for a preoperative appointment and a swallow test. Bright and early on Wednesday they did the surgery, which I remember very little of. They did have to have me awake part of the time so they could hear me talk as Dr. Flint drilled out the old 6mm implant, and lowered the new 5mm one in my voice box by 1mm ! (checking the CT scan of it to be precise). They kept me in the hospital overnight and released me Thursday morning. My voice is now back to some semblance of baritone, though quite raspy at times. Since this surgery is relatively minor, I felt good enough later in the day that we could go for Vietnamese food and an evening of jazz at Jimmy Mak's for our anniversary, riding "home" on the streetcar. Pretty good, huh? In the hospital one night, then out on the town the next!
The EC Research dinner Friday night was interesting and fun. We met a bunch of other esophageal cancer survivors who all had their own stories to tell. Also there were surgeons and researchers who have devoted their lives to medicine, including my principal surgeons, Dr. John Hunter and Dr. James Dolan. Mad was thrilled to meet Dr. Brian Druker, director of OHSU's Knight Cancer Institute. Thanks to Phil Knight (founder of Nike) and the people of Oregon, Druker now has $1 billion to spend on a state of the art new research center in Portland that aims to cure cancer. He was in the last segment of Ken Burns' documentary The Emperor of All Maladies. He's rather famous but was very humble and nice (see his bio on Wikipedia or OHSU.)
Dr. Dolan had done the repair of my recent diaphragmatic hernia. He told me more about what he had done; that it was a close run thing, that if he had not flown me in for emergency surgery when he did I would be either dead or still in the hospital. The doctors in Bend could not figure out what was wrong with me. Thus I feel very lucky that the pros in Portland, who see this uncommon condition more often, were able to recognize it and operate on me in the nick of time. 75% of my small bowel had pushed up into my chest cavity. It was all tangled up in there so that no food could pass through. It was also impeding the function of my heart and lungs. Working laparoscopically at 4am through 7 little incisions in my belly, Dolan (with all the residents and a fellow) had to very carefully pull all of that back down into my abdominal cavity (through the new space I have where my gastric conduit passes through my diaphragm), then repair the hernia with biological mesh. Amazing!
I should be able to get back into the water in a few weeks. It will be good to swim again, even though they have cautioned me that I should not do any hard workouts. Looking at my calendar, there are no doctor's appointments for the next month; only a visit to a voice pathologist. Therefore, if you don't hear much from me for a while, that's good! No news is good news, right?
By the way, if any of you know Bob Nealy, but have not been following him on Caring Bridge, he so far is doing fine after his bone marrow transplant.
A stormy Saturday afternoon. Mad is nordic skiing up at Hoodoo, our nearby ski area. I just got in from a three mile forest walk. There is no snow left on the ground, but it was snowing off and on during the hike... beautiful. I can feel some modicum of fitness returning, though very slowly. We've been home for a week now, after what seems, looking back, like weeks of peripatetic traveling. Only one doctor appointment this week, in Bend.
When last we were in Portland, as I mention in my last missive, I had another medialization thyroplasty to repair my left vocal cord. After only a few days at home from our last Portland visit, we headed back up there on Tuesday for a preoperative appointment and a swallow test. Bright and early on Wednesday they did the surgery, which I remember very little of. They did have to have me awake part of the time so they could hear me talk as Dr. Flint drilled out the old 6mm implant, and lowered the new 5mm one in my voice box by 1mm ! (checking the CT scan of it to be precise). They kept me in the hospital overnight and released me Thursday morning. My voice is now back to some semblance of baritone, though quite raspy at times. Since this surgery is relatively minor, I felt good enough later in the day that we could go for Vietnamese food and an evening of jazz at Jimmy Mak's for our anniversary, riding "home" on the streetcar. Pretty good, huh? In the hospital one night, then out on the town the next!
The EC Research dinner Friday night was interesting and fun. We met a bunch of other esophageal cancer survivors who all had their own stories to tell. Also there were surgeons and researchers who have devoted their lives to medicine, including my principal surgeons, Dr. John Hunter and Dr. James Dolan. Mad was thrilled to meet Dr. Brian Druker, director of OHSU's Knight Cancer Institute. Thanks to Phil Knight (founder of Nike) and the people of Oregon, Druker now has $1 billion to spend on a state of the art new research center in Portland that aims to cure cancer. He was in the last segment of Ken Burns' documentary The Emperor of All Maladies. He's rather famous but was very humble and nice (see his bio on Wikipedia or OHSU.)
Dr. Dolan had done the repair of my recent diaphragmatic hernia. He told me more about what he had done; that it was a close run thing, that if he had not flown me in for emergency surgery when he did I would be either dead or still in the hospital. The doctors in Bend could not figure out what was wrong with me. Thus I feel very lucky that the pros in Portland, who see this uncommon condition more often, were able to recognize it and operate on me in the nick of time. 75% of my small bowel had pushed up into my chest cavity. It was all tangled up in there so that no food could pass through. It was also impeding the function of my heart and lungs. Working laparoscopically at 4am through 7 little incisions in my belly, Dolan (with all the residents and a fellow) had to very carefully pull all of that back down into my abdominal cavity (through the new space I have where my gastric conduit passes through my diaphragm), then repair the hernia with biological mesh. Amazing!
I should be able to get back into the water in a few weeks. It will be good to swim again, even though they have cautioned me that I should not do any hard workouts. Looking at my calendar, there are no doctor's appointments for the next month; only a visit to a voice pathologist. Therefore, if you don't hear much from me for a while, that's good! No news is good news, right?
By the way, if any of you know Bob Nealy, but have not been following him on Caring Bridge, he so far is doing fine after his bone marrow transplant.
Back to dancing, swimming and hiking! — Apr 23, 2016
Another Saturday afternoon. It's been six weeks since last I wrote. Remember, I said that no news is good news, but a few friends have been wondering what's going on.
Healing is coming along and I'm feeling good. Week before last I had my 74th birthday. It was the twelfth week since my hernia surgery in January, so I started swimming again. I'm trying my best to obey my doctors' orders and not push it too hard. I feel good in the water, even though I am weak and slow. My practices have entailed about 1500 yards of swimming, while before cancer I was going 3500. I know that I will improve with time, but I have no competitive aspirations, so it doesn't matter that I've cut my workouts way back. Yesterday I loaded my new ultralight backpack with 20 pounds and Mad led me on a one hour uphill hike. That went pretty well, too. Again, I'm weak, but can sustain a steady pace if I go slow enough. This bodes well for summer backpack trips, but again, nothing as arduous as I am used to.
This last week we went up to Portland, where I was fitted with a Holter monitor for 48 hours, preparatory to my 2nd appointment next week with the electrophysiologist. I think my episodes of atrial tachycardia have decreased since I last saw him, but the results of the monitor will tell the tale. I'll let you know. On Tuesday I had a followup appointment with Dr. Flint, the laryngologist, this because my voice has deteriorated since the thyroplasty revision... which was supposed to fix it, again. I was afraid there might be something overtly wrong, but he did not see anything. Nor did he have any magic bullet for improving things. He only had one thing up his sleeve, even though I do not relish the prospect of another surgery. His plan: "Wait 4-6 months and we'll see what happens." He could do an 'old school' laryngoplasty injection with autologous fat. That would plump up my atrophied left vocal cord so I get better closure for swallowing and stronger voice.
Earlier this month we took to the road for the annual jazz festival in Eureka, CA. We had a great time, listening to music and dancing our little feet off all day for three days. We took time to camp and hike in the redwoods and on the beach, too... luckily we had great weather. We love that part of the world. On the way home we took time to visit friends Gregory and Carter in Coos Bay and Sue and Doug in Eugene. Thanks for your hospitality!!! All in all, it was a great road trip.
The next big doctor appointment after this will be in mid-May when I have my 4th quarterly CT scan for cancer recurrence. If that goes well, and there is no reason to think it shouldn't, I go to a six month rotation... and no more doctor appointments on the calendar for the rest of the summer. Will we finally be out of base camp?
Another Saturday afternoon. It's been six weeks since last I wrote. Remember, I said that no news is good news, but a few friends have been wondering what's going on.
Healing is coming along and I'm feeling good. Week before last I had my 74th birthday. It was the twelfth week since my hernia surgery in January, so I started swimming again. I'm trying my best to obey my doctors' orders and not push it too hard. I feel good in the water, even though I am weak and slow. My practices have entailed about 1500 yards of swimming, while before cancer I was going 3500. I know that I will improve with time, but I have no competitive aspirations, so it doesn't matter that I've cut my workouts way back. Yesterday I loaded my new ultralight backpack with 20 pounds and Mad led me on a one hour uphill hike. That went pretty well, too. Again, I'm weak, but can sustain a steady pace if I go slow enough. This bodes well for summer backpack trips, but again, nothing as arduous as I am used to.
This last week we went up to Portland, where I was fitted with a Holter monitor for 48 hours, preparatory to my 2nd appointment next week with the electrophysiologist. I think my episodes of atrial tachycardia have decreased since I last saw him, but the results of the monitor will tell the tale. I'll let you know. On Tuesday I had a followup appointment with Dr. Flint, the laryngologist, this because my voice has deteriorated since the thyroplasty revision... which was supposed to fix it, again. I was afraid there might be something overtly wrong, but he did not see anything. Nor did he have any magic bullet for improving things. He only had one thing up his sleeve, even though I do not relish the prospect of another surgery. His plan: "Wait 4-6 months and we'll see what happens." He could do an 'old school' laryngoplasty injection with autologous fat. That would plump up my atrophied left vocal cord so I get better closure for swallowing and stronger voice.
Earlier this month we took to the road for the annual jazz festival in Eureka, CA. We had a great time, listening to music and dancing our little feet off all day for three days. We took time to camp and hike in the redwoods and on the beach, too... luckily we had great weather. We love that part of the world. On the way home we took time to visit friends Gregory and Carter in Coos Bay and Sue and Doug in Eugene. Thanks for your hospitality!!! All in all, it was a great road trip.
The next big doctor appointment after this will be in mid-May when I have my 4th quarterly CT scan for cancer recurrence. If that goes well, and there is no reason to think it shouldn't, I go to a six month rotation... and no more doctor appointments on the calendar for the rest of the summer. Will we finally be out of base camp?
Doctors.... doctors — May 2, 2016
Thinking back into the mists of time. Years on end when I didn't even think about going to a doctor. Ah... those were the days. I'm grateful for everything they've done for me but my last year and a half has been like one long doctor appointment. Is there an end in sight? No, but possibly I can go for several months without a consultation.
I told you I would let you know what happened in the arrhythmia clinic with the electrophysiologist, Dr. Dewland. For the 48 hours I wore the Holter monitor, it showed a few brief episodes of supra ventricular tachycardia, of which atrial tachycardia is a form of. It was only a "4% burden" of AT with short bursts of premature atrial contractions, nothing sustained. I'm not in danger as not symptomatic, but it is still a source of concern. I don't have to take any additional medicines or alter my lifestyle, but it does bear watching. "I want to see you again in six months", he said. He also advocates that I continue taking the expensive blood thinner that I have been on since my crisis in January, since they are preventatives for blood clots and stroke. Evidently my weird heart rhythms are possible precursors of atrial fibrillation, which is a possible precursor of stroke. It's not that great to be taking blood thinners long term but better than the alternatives. Increasingly, as we age, that seems to be a mantra doctors use when one is faced with the lesser of evils.
This coming week I see my cardiologist in Bend, only one hour away, who said when I first discovered the atrial tachycardia, "I'm just a plumber. You need an electrician." That's what prompted my visit to the electrophysiologist. This week is a routine visit and I don't expect him to do more than to tell me I'm doing fine. Then, week after next, as I mentioned in my last post, I have my one year post-esophagectomy CT scan and see my surgeon, Dr. Hunter. All my previous scans have shown no recurrence of cancer and I trust that this one will be no different. Then I won't have to see him for another six months. Or, hopefully, any doctors until at least the end of summer.
Once I get a relatively clean bill of health from Hunter, we can start making plans for the summer. Looking forward, that may entail visiting family and friends in far flung locations and backpacking in the Cascades and High Sierra.
Thinking back into the mists of time. Years on end when I didn't even think about going to a doctor. Ah... those were the days. I'm grateful for everything they've done for me but my last year and a half has been like one long doctor appointment. Is there an end in sight? No, but possibly I can go for several months without a consultation.
I told you I would let you know what happened in the arrhythmia clinic with the electrophysiologist, Dr. Dewland. For the 48 hours I wore the Holter monitor, it showed a few brief episodes of supra ventricular tachycardia, of which atrial tachycardia is a form of. It was only a "4% burden" of AT with short bursts of premature atrial contractions, nothing sustained. I'm not in danger as not symptomatic, but it is still a source of concern. I don't have to take any additional medicines or alter my lifestyle, but it does bear watching. "I want to see you again in six months", he said. He also advocates that I continue taking the expensive blood thinner that I have been on since my crisis in January, since they are preventatives for blood clots and stroke. Evidently my weird heart rhythms are possible precursors of atrial fibrillation, which is a possible precursor of stroke. It's not that great to be taking blood thinners long term but better than the alternatives. Increasingly, as we age, that seems to be a mantra doctors use when one is faced with the lesser of evils.
This coming week I see my cardiologist in Bend, only one hour away, who said when I first discovered the atrial tachycardia, "I'm just a plumber. You need an electrician." That's what prompted my visit to the electrophysiologist. This week is a routine visit and I don't expect him to do more than to tell me I'm doing fine. Then, week after next, as I mentioned in my last post, I have my one year post-esophagectomy CT scan and see my surgeon, Dr. Hunter. All my previous scans have shown no recurrence of cancer and I trust that this one will be no different. Then I won't have to see him for another six months. Or, hopefully, any doctors until at least the end of summer.
Once I get a relatively clean bill of health from Hunter, we can start making plans for the summer. Looking forward, that may entail visiting family and friends in far flung locations and backpacking in the Cascades and High Sierra.
Let's Have a Party! — May 12, 2016
Next week, on Tuesday, I have my one year cancer screen at OHSU. In the afternoon, from 5 o’clock on, we are planning an informal get-together of friends at our hotel, the River’s Edge, in the South waterfront district right off Macadam, 3 blocks south of the end of the N-S streetcar line. We will meet in the Aquariva restaurant next to the hotel, which is right on the river and has a beautifully convivial atmosphere. Come along and socialize, imbibe with us during happy hour, stay afterward for dinner, whatever. Everyone is welcome, so bring your spouses, significant others or assorted swim friends. Hors d’oeuvres provided; no host bar.
I look forward to seeing you soon, either next week or whenever in the future our paths may again cross. After this we'll have a party in Central Oregon too, with a little more notice.
Tom
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Whatever the news, we’re celebrating Tom being upright and happy one year out and we would love to see you! We'll toast Tom with my now signature Aquariva champagne cocktail, the Madeleine…. It's been a wild ride and no one knows when it will end, so hop on!
Madeleine
Next week, on Tuesday, I have my one year cancer screen at OHSU. In the afternoon, from 5 o’clock on, we are planning an informal get-together of friends at our hotel, the River’s Edge, in the South waterfront district right off Macadam, 3 blocks south of the end of the N-S streetcar line. We will meet in the Aquariva restaurant next to the hotel, which is right on the river and has a beautifully convivial atmosphere. Come along and socialize, imbibe with us during happy hour, stay afterward for dinner, whatever. Everyone is welcome, so bring your spouses, significant others or assorted swim friends. Hors d’oeuvres provided; no host bar.
I look forward to seeing you soon, either next week or whenever in the future our paths may again cross. After this we'll have a party in Central Oregon too, with a little more notice.
Tom
----------
Whatever the news, we’re celebrating Tom being upright and happy one year out and we would love to see you! We'll toast Tom with my now signature Aquariva champagne cocktail, the Madeleine…. It's been a wild ride and no one knows when it will end, so hop on!
Madeleine
Eat Dessert First...— May 18, 2016
...because life is uncertain. One of my mantras, a philosophical base for living, but usually in jest. Uncertainty; in actuality about the only certainty in life. And now, unfortunately, more than ever.
I had assumed that Tuesday's CT scan would bring some certainty to life, that a positive result would open up the future. Well, friends, it is not to be. Dr. John Hunter: "You have a suspicious nodule in your left lung which bears further investigation." Whoops. Everything up in the air again. At our party we could celebrate getting this far in one year, and we did have fun in spite of the questionable scan result. Instead of returning home today we're staying in Portland so I can have a PET scan tomorrow and consultation with Dr. Schipper, my old thoracic surgeon, on Friday.
The nodule started out as a small dot on previous scans, too small to be of any concern. Now it's grown to 10mm and must be investigated as a possibly cancerous growth. Tomorrow's PET will tell the tale. If it's not cancer we will do "surveillance" as time goes by. If it is cancer we will discuss with Schipper the strategy for going forward, which would probably entail cutting it out. Wow... another operation and more hospital time; I certainly don't look forward to that. But it's all speculation just now. We told you we would let you know the results of the scan and there you are. More definitive news to follow in a few days.
...because life is uncertain. One of my mantras, a philosophical base for living, but usually in jest. Uncertainty; in actuality about the only certainty in life. And now, unfortunately, more than ever.
I had assumed that Tuesday's CT scan would bring some certainty to life, that a positive result would open up the future. Well, friends, it is not to be. Dr. John Hunter: "You have a suspicious nodule in your left lung which bears further investigation." Whoops. Everything up in the air again. At our party we could celebrate getting this far in one year, and we did have fun in spite of the questionable scan result. Instead of returning home today we're staying in Portland so I can have a PET scan tomorrow and consultation with Dr. Schipper, my old thoracic surgeon, on Friday.
The nodule started out as a small dot on previous scans, too small to be of any concern. Now it's grown to 10mm and must be investigated as a possibly cancerous growth. Tomorrow's PET will tell the tale. If it's not cancer we will do "surveillance" as time goes by. If it is cancer we will discuss with Schipper the strategy for going forward, which would probably entail cutting it out. Wow... another operation and more hospital time; I certainly don't look forward to that. But it's all speculation just now. We told you we would let you know the results of the scan and there you are. More definitive news to follow in a few days.
Another Mountain to Climb — May 21, 2016
In my last post I ruminated about the vicissitudes of life, how being plagued by uncertainty frustrates plans. Well, an unfortunate note of certainty has just been injected into my life, that I have another cancer mountain to climb. The "suspicious nodule" in my left lung "lit up" in the PET scan, indicating that it is most probably a cancerous tumor.
Today we met with Dr. Schipper, my thoracic surgeon from last year, who broke the bad news. Then we discussed at length how to go forward. The result of that discussion is that I am scheduled to go in for surgery on June 9th to remove the dastardly tumor. If there is any silver lining to the situation it is that the scan did not show any other occurrences of cancer, just the one tumor. Of course, there is no guarantee that an evil cell is not still lurking out there somewhere, but this tumor seems to be all by itself, just waiting to be plucked out by a clever surgeon.
That sounds a bit flip, I know. The tumor is in a difficult place, close to my gastric conduit, my aorta and some major blood vessels in the lung. Dr. Schipper is pretty confident he can go in and get it, though, hopefully using the VATS technique (video-assisted thoracoscopic surgery, which is considered minimally invasive) and just taking a small "wedge" out of my lung. Possible complications are many, but I won't go into that now.
Damn. I thought I would be through the woods by now. I really don't like the thought of another surgery, more hospital time, another lengthy recovery. The survivability prospects are pretty good, so I'll climb the mountain again (Mt. Whitney perhaps this time) and look forward to some good times on the other side.
In my last post I ruminated about the vicissitudes of life, how being plagued by uncertainty frustrates plans. Well, an unfortunate note of certainty has just been injected into my life, that I have another cancer mountain to climb. The "suspicious nodule" in my left lung "lit up" in the PET scan, indicating that it is most probably a cancerous tumor.
Today we met with Dr. Schipper, my thoracic surgeon from last year, who broke the bad news. Then we discussed at length how to go forward. The result of that discussion is that I am scheduled to go in for surgery on June 9th to remove the dastardly tumor. If there is any silver lining to the situation it is that the scan did not show any other occurrences of cancer, just the one tumor. Of course, there is no guarantee that an evil cell is not still lurking out there somewhere, but this tumor seems to be all by itself, just waiting to be plucked out by a clever surgeon.
That sounds a bit flip, I know. The tumor is in a difficult place, close to my gastric conduit, my aorta and some major blood vessels in the lung. Dr. Schipper is pretty confident he can go in and get it, though, hopefully using the VATS technique (video-assisted thoracoscopic surgery, which is considered minimally invasive) and just taking a small "wedge" out of my lung. Possible complications are many, but I won't go into that now.
Damn. I thought I would be through the woods by now. I really don't like the thought of another surgery, more hospital time, another lengthy recovery. The survivability prospects are pretty good, so I'll climb the mountain again (Mt. Whitney perhaps this time) and look forward to some good times on the other side.
Take Five ... — Jun 8, 2016
Wednesday. We are in Portland. One of my all time favorite jazz standards is Dave Brubeck's Take Five . Unfortunately tomorrow I'm faced with my own 'Take Five'. (my 5th surgery in the last 13 months)
We heard some great jazz last night (Mel Brown Septet at Jimmy Maks) with swim friend Arlene and her husband Peter, for a last burst of urban fun. We had breakfast with Jim and Leslee from Sisters and have been taking it easy preparatory to tomorrow's surgery. I just found out we have to check in on the hill at the hideous hour of 5:30 am! Mad seconds that sentiment.
I feel great, still not back to what I consider normal, but when will that ever be? I know the operation is something I must endure to get rid of the cancer growing in my lung. That they must cut out part of my lung is just something that must happen and I don’t feel a whole lot of trepidation about it, as the alternative is not an option. The recovery afterward, though, daunts me. The long, slow process of getting back strength and stamina is just such a drag… which seems to be happening to me over and over.
Seventeen months ago, January of 2015, they discovered the cancer in my esophagus. Subsequently I went through chemo and radiation, which knocked my body for a loop. All I wanted to do at the end was lean into my pillow. Then they gave me two months to recover prior to surgery. Slowly, steadily, I got better and by the surgery date I felt great again.
Surgery and complications, six weeks in the hospital, took me down again. I was so weak I couldn’t walk a block when I got out of the hospital in July. Then the long, slow recovery process again. By December I was feeling great, not all the way back by any means, but doing yard work, regular swim workouts and even downhill skiing. Nobody on my medical team ever told me that I should take it easy as I worked to recover physical fitness.
In January, a late night emergency plane flight to Portland. “Get him here within 24 hours or he may die!” They discovered at OHSU what the doctors in Bend could not see in the scans, that my diaphragm had herniated and my intestines were crowding out my heart and lungs in my chest cavity. Ick! Not such a long stay in the hospital this time, only five days, but a body weakened by surgery and another long recovery period looming.
So... here I go again. Another hill to climb. Mad will keep you informed as to how things go tomorrow and how I progress thereafter. When I feel up to it, I'll chime in with my own thoughts.
Wednesday. We are in Portland. One of my all time favorite jazz standards is Dave Brubeck's Take Five . Unfortunately tomorrow I'm faced with my own 'Take Five'. (my 5th surgery in the last 13 months)
We heard some great jazz last night (Mel Brown Septet at Jimmy Maks) with swim friend Arlene and her husband Peter, for a last burst of urban fun. We had breakfast with Jim and Leslee from Sisters and have been taking it easy preparatory to tomorrow's surgery. I just found out we have to check in on the hill at the hideous hour of 5:30 am! Mad seconds that sentiment.
I feel great, still not back to what I consider normal, but when will that ever be? I know the operation is something I must endure to get rid of the cancer growing in my lung. That they must cut out part of my lung is just something that must happen and I don’t feel a whole lot of trepidation about it, as the alternative is not an option. The recovery afterward, though, daunts me. The long, slow process of getting back strength and stamina is just such a drag… which seems to be happening to me over and over.
Seventeen months ago, January of 2015, they discovered the cancer in my esophagus. Subsequently I went through chemo and radiation, which knocked my body for a loop. All I wanted to do at the end was lean into my pillow. Then they gave me two months to recover prior to surgery. Slowly, steadily, I got better and by the surgery date I felt great again.
Surgery and complications, six weeks in the hospital, took me down again. I was so weak I couldn’t walk a block when I got out of the hospital in July. Then the long, slow recovery process again. By December I was feeling great, not all the way back by any means, but doing yard work, regular swim workouts and even downhill skiing. Nobody on my medical team ever told me that I should take it easy as I worked to recover physical fitness.
In January, a late night emergency plane flight to Portland. “Get him here within 24 hours or he may die!” They discovered at OHSU what the doctors in Bend could not see in the scans, that my diaphragm had herniated and my intestines were crowding out my heart and lungs in my chest cavity. Ick! Not such a long stay in the hospital this time, only five days, but a body weakened by surgery and another long recovery period looming.
So... here I go again. Another hill to climb. Mad will keep you informed as to how things go tomorrow and how I progress thereafter. When I feel up to it, I'll chime in with my own thoughts.
Take Five, an easier climb — Jun 10, 2016
Friday. Surgery was yesterday. According to Dr. Schipper it went very well, easier than he had expected. I did not even have to go to the ICU afterward, but went straight to a regular hospital room on the cardio/thoracic unit, 2 floors below where I was last summer. I had a terrible bout of nausea in the recovery area and when I got up to my room, but today I feel much better.
I think I will recover faster this time. They did not have to open me up wide, but went in to my lung via 2 relatively small incisions for video assisted surgery to remove what indeed turned out to be a cancerous tumor. Now we have to wait up to a week for the pathology report to find out if it was esophageal cancer or a new primary lung cancer. Then decisions will have to be made regarding possible rounds of chemo, or just watchful waiting. They are happy that they could not find any other cancers in there. So am I! They are aiming to get me out of here on Sunday or Monday. This time there will be no complications to keep me in the hospital longer, right? There are lots of other details with which I could flesh out this story, but I just wanted to give you the major implications ASAP. If Mad wants to fill in more of the nuances later, you may hear from her. Thanks for all your wonderful well wishes!
Friday. Surgery was yesterday. According to Dr. Schipper it went very well, easier than he had expected. I did not even have to go to the ICU afterward, but went straight to a regular hospital room on the cardio/thoracic unit, 2 floors below where I was last summer. I had a terrible bout of nausea in the recovery area and when I got up to my room, but today I feel much better.
I think I will recover faster this time. They did not have to open me up wide, but went in to my lung via 2 relatively small incisions for video assisted surgery to remove what indeed turned out to be a cancerous tumor. Now we have to wait up to a week for the pathology report to find out if it was esophageal cancer or a new primary lung cancer. Then decisions will have to be made regarding possible rounds of chemo, or just watchful waiting. They are happy that they could not find any other cancers in there. So am I! They are aiming to get me out of here on Sunday or Monday. This time there will be no complications to keep me in the hospital longer, right? There are lots of other details with which I could flesh out this story, but I just wanted to give you the major implications ASAP. If Mad wants to fill in more of the nuances later, you may hear from her. Thanks for all your wonderful well wishes!
Moving Forward — Jun 15, 2016
They discharged me on Monday. It's amazing to me that they could go in there, take out a part of my lung and let me out a free man only four and a half days post surgery. We are staying around Portland a few days now just in case some nasty surprise occurs, but so far I feel much better than I expected. My energy level is pretty good and I am managing pain with acetaminophen rather than narcotics. All my bodily functions seem to be working, I'm sleeping well and my appetite is good. In other words, all systems are "go" for heading back over the mountains soon.
So... the immediate cancer threat has been removed. We learned this morning from Dr Hunter's wonderful nurse Lisa, that the pathology report did come out in time for the EC (esophageal cancer) tumor board to discuss it. The 1.5 cm tumor removed last Thursday with the wedge resection wasmetastasized EC. That's not good... but they were watching this tiny speck grow very slowly for months and now it is gone. There are no other suspicious specks at this time big enough to worry or do anything about. So technically I am cancer free right now! Next we are waiting for an oncologist to call and discuss future options. Chemotherapy is a possibility I certainly do not look forward to and they truly don't even know if it would be effective in my case, as so few patients are in this situation. We know of one such person who is thriving 6 years out and we'll be calling him again soon to learn what he did and why.
We'll let you know as things become clearer with time. We might be able to salvage our summer once I get strength back from surgery, but I'm not supposed to lift more than 10 pounds for 6 weeks. So, day hiking or ultralight backpacking with Mad and other human 'mules' (that means you Giggles and Bruce!) might get us into the high Sierra! I feel a lot better now than I have after any of my other hospital stays, so I'm pretty confident that I will be back to my "new" old self before long.
I am grateful for so many things. First, Madeleine for her fierce, unwavering advocacy; she is truly a force of nature in this regard. And the support I get here on Caring Bridge from so many of you concerned for my welfare is a constant comfort. That so many of you can send so much caring energy in our direction is awesome indeed. Thank you all so very much!!
They discharged me on Monday. It's amazing to me that they could go in there, take out a part of my lung and let me out a free man only four and a half days post surgery. We are staying around Portland a few days now just in case some nasty surprise occurs, but so far I feel much better than I expected. My energy level is pretty good and I am managing pain with acetaminophen rather than narcotics. All my bodily functions seem to be working, I'm sleeping well and my appetite is good. In other words, all systems are "go" for heading back over the mountains soon.
So... the immediate cancer threat has been removed. We learned this morning from Dr Hunter's wonderful nurse Lisa, that the pathology report did come out in time for the EC (esophageal cancer) tumor board to discuss it. The 1.5 cm tumor removed last Thursday with the wedge resection wasmetastasized EC. That's not good... but they were watching this tiny speck grow very slowly for months and now it is gone. There are no other suspicious specks at this time big enough to worry or do anything about. So technically I am cancer free right now! Next we are waiting for an oncologist to call and discuss future options. Chemotherapy is a possibility I certainly do not look forward to and they truly don't even know if it would be effective in my case, as so few patients are in this situation. We know of one such person who is thriving 6 years out and we'll be calling him again soon to learn what he did and why.
We'll let you know as things become clearer with time. We might be able to salvage our summer once I get strength back from surgery, but I'm not supposed to lift more than 10 pounds for 6 weeks. So, day hiking or ultralight backpacking with Mad and other human 'mules' (that means you Giggles and Bruce!) might get us into the high Sierra! I feel a lot better now than I have after any of my other hospital stays, so I'm pretty confident that I will be back to my "new" old self before long.
I am grateful for so many things. First, Madeleine for her fierce, unwavering advocacy; she is truly a force of nature in this regard. And the support I get here on Caring Bridge from so many of you concerned for my welfare is a constant comfort. That so many of you can send so much caring energy in our direction is awesome indeed. Thank you all so very much!!
Enjoying summer days at home — Jul 2, 2016
Thursday I took a leisurely hike along the river with Mad and our friend Karen. As soon as I stepped onto the trail, a Dipper flew out off a streamside rock. Momentarily thereafter, here comes an Osprey, straight down the river, a fish clutched in its talons. Wow! Two of my favorite birds. The Osprey, such a magnificent predator; I just love their “go for it” attitude when they splash willy nilly into the water after a fish. The Dipper, such a nondescript little bird, but so precious in song and habit, working it’s watery environment. John Muir’s favorite bird, by the way.
The riparian scene is at its peak right now. Wildflowers abound; lupine are especially prime, along with monkey flower, cow parsnip, paintbrush, cinquefoil and scores I cannot identify. We dawdle, admiring all the flowers. It takes us an hour to go a mile. It is so great to be alive! It is so great to be able to live in such a fantastically beautiful place!
Wow, how schmaltzy. So… here’s what’s been going on. Wednesday was three weeks since my thoracic surgery. I am amazed at how good I feel. I’m still weak, mind you, and recovery is frustratingly slow, but overall I feel good. I’m walking two or three miles every few days and not feeling too wiped out by it. Yeah, I often take a nap thereafter, but then nap time has become a part of my life generally.
I don’t know a whole lot more about what’s in my future than I did in my last post. I have appointments with two oncologists later this month to discuss my prospects. Earlier this week we were in Portland for followup visits with my surgeon and laryngologist. Everything is looking good regarding the surgery. They removed the stitch, X-rayed my chest and are happy with the healing that is occurring so far. My voice and swallowing are still not right after all these months, so there is another procedure in my near future to try and rectify that situation.
After I see the oncologists I will have a better perspective on whether or not to endure chemotherapy again to reduce the chances of cancer recurring. There are many unknowns as to how much it would improve my future prospects. As I said in my last post, there is no cancer apparent in my body right now… and that’s good. However, according to my surgeon, Dr. Schipper, there is a 50% chance that it will come back. That’s either good or bad, depending upon how you look at it. After the oncology visits I will have a weighty decision to make, but regardless, nothing will probably happen until sometime in the fall. In August we hope to make a trip to California to visit friends, family, go to Tassajara for a retreat, and finally some form of backpacking in the Sierra!
Thursday I took a leisurely hike along the river with Mad and our friend Karen. As soon as I stepped onto the trail, a Dipper flew out off a streamside rock. Momentarily thereafter, here comes an Osprey, straight down the river, a fish clutched in its talons. Wow! Two of my favorite birds. The Osprey, such a magnificent predator; I just love their “go for it” attitude when they splash willy nilly into the water after a fish. The Dipper, such a nondescript little bird, but so precious in song and habit, working it’s watery environment. John Muir’s favorite bird, by the way.
The riparian scene is at its peak right now. Wildflowers abound; lupine are especially prime, along with monkey flower, cow parsnip, paintbrush, cinquefoil and scores I cannot identify. We dawdle, admiring all the flowers. It takes us an hour to go a mile. It is so great to be alive! It is so great to be able to live in such a fantastically beautiful place!
Wow, how schmaltzy. So… here’s what’s been going on. Wednesday was three weeks since my thoracic surgery. I am amazed at how good I feel. I’m still weak, mind you, and recovery is frustratingly slow, but overall I feel good. I’m walking two or three miles every few days and not feeling too wiped out by it. Yeah, I often take a nap thereafter, but then nap time has become a part of my life generally.
I don’t know a whole lot more about what’s in my future than I did in my last post. I have appointments with two oncologists later this month to discuss my prospects. Earlier this week we were in Portland for followup visits with my surgeon and laryngologist. Everything is looking good regarding the surgery. They removed the stitch, X-rayed my chest and are happy with the healing that is occurring so far. My voice and swallowing are still not right after all these months, so there is another procedure in my near future to try and rectify that situation.
After I see the oncologists I will have a better perspective on whether or not to endure chemotherapy again to reduce the chances of cancer recurring. There are many unknowns as to how much it would improve my future prospects. As I said in my last post, there is no cancer apparent in my body right now… and that’s good. However, according to my surgeon, Dr. Schipper, there is a 50% chance that it will come back. That’s either good or bad, depending upon how you look at it. After the oncology visits I will have a weighty decision to make, but regardless, nothing will probably happen until sometime in the fall. In August we hope to make a trip to California to visit friends, family, go to Tassajara for a retreat, and finally some form of backpacking in the Sierra!
Feeling Good in Spite of Uncertainty — Jul 25, 2016
This weekend Madeleine and I, along with our good friend Marilyn, hiked up into the nearby Cascades for an overnight backpacking trip. My first wilderness foray since last September was a pretty easy hike, but I was pleasantly surprised by how great I felt. I’m still weak and out of shape, but intuitively I feel that I am recovering nicely from having had a part of my lung removed last month. As long as I take it slow and easy, I can hike steadily uphill with a light pack. This bodes well for High Sierra hiking next month. Too, I got back in the pool last week for an easy 1,000 yards and, though rusty, felt pretty good in the water.
Okay, that’s the gist of how I feel and what I’ve been doing. What most of you really want to know is what’s going on in the big picture, so here goes.
Ever since my esophagectomy (14 months ago) there has been the possibility that the cancer would come back, metastasizing to some other part of my body. And that did in fact occur. Bad news. The good news is, as I indicated in earlier posts, that it only came back in one place as one cancerous nodule. This is rare. More often it comes back as multiple tumors. So, am I lucky or unlucky? I guess that depends upon whether you are a “glass is half full” or a “glass is half empty” sort of person. The good news is that the last CT and PET imaging shows no other occurrences of cancer anywhere.
Just because imaging does not show any cancer does not mean, however, that there are none of the meanies swimming around inside me. There is a pretty good chance that cancer still lurks, but they don’t really have any definitive answers because the way my cancer reoccurred is so rare - “oligo metastasis”. The best the doctors can come up with is 50-50. That’s where decisions need to be made and why I have been consulting with various oncologists this month.
What to do about the possibilities available now? Basically, it’s whether or not to subject myself to a preventative course of chemotherapy. Previous decisions have been no-brainers. Remove the cancer from my esophagus or I die. Fix the diaphragmatic hernia or I die. Cut the metastasis out of my lung or have the cancer spread. There is no data, however, to show that chemotherapy would do any good to prevent the spread of whatever cancer may still be present. It would be poisoning my system to go after an enemy that might not even be there with a therapy that might not do any good. Still, it would be doing… something, rather than just waiting and watching. There is data, though, that says chemo can severely weaken my immune system and getting aspiration pneumonia would be a real threat.
Both my oncologists offered chemotherapy as a preventative therapy for killing whatever cancer may still remain, at the same time agreeing that there is no evidence that it would do any good in my particular situation. “So what would you like to do, Mr. Landis?”
So, particularly because I am progressively feeling better and better, I decided to forego the chemo and go on with my life. If the cancer comes back, so be it. That’s the uncertainty that is a part of my life… and always will be. I could go all philosophical here and ruminate about everything in life being uncertain, but I’ll spare you that.
Tomorrow we head back up to Portland. I’ll get new CT scan to serve as a post-lung surgery baseline for the oncologists going forward. Then on Wednesday I’m having a fourth procedure on my throat, the injection laryngoplasty with my own fat, to try and improve my voice, and more importantly, swallowing.
This weekend Madeleine and I, along with our good friend Marilyn, hiked up into the nearby Cascades for an overnight backpacking trip. My first wilderness foray since last September was a pretty easy hike, but I was pleasantly surprised by how great I felt. I’m still weak and out of shape, but intuitively I feel that I am recovering nicely from having had a part of my lung removed last month. As long as I take it slow and easy, I can hike steadily uphill with a light pack. This bodes well for High Sierra hiking next month. Too, I got back in the pool last week for an easy 1,000 yards and, though rusty, felt pretty good in the water.
Okay, that’s the gist of how I feel and what I’ve been doing. What most of you really want to know is what’s going on in the big picture, so here goes.
Ever since my esophagectomy (14 months ago) there has been the possibility that the cancer would come back, metastasizing to some other part of my body. And that did in fact occur. Bad news. The good news is, as I indicated in earlier posts, that it only came back in one place as one cancerous nodule. This is rare. More often it comes back as multiple tumors. So, am I lucky or unlucky? I guess that depends upon whether you are a “glass is half full” or a “glass is half empty” sort of person. The good news is that the last CT and PET imaging shows no other occurrences of cancer anywhere.
Just because imaging does not show any cancer does not mean, however, that there are none of the meanies swimming around inside me. There is a pretty good chance that cancer still lurks, but they don’t really have any definitive answers because the way my cancer reoccurred is so rare - “oligo metastasis”. The best the doctors can come up with is 50-50. That’s where decisions need to be made and why I have been consulting with various oncologists this month.
What to do about the possibilities available now? Basically, it’s whether or not to subject myself to a preventative course of chemotherapy. Previous decisions have been no-brainers. Remove the cancer from my esophagus or I die. Fix the diaphragmatic hernia or I die. Cut the metastasis out of my lung or have the cancer spread. There is no data, however, to show that chemotherapy would do any good to prevent the spread of whatever cancer may still be present. It would be poisoning my system to go after an enemy that might not even be there with a therapy that might not do any good. Still, it would be doing… something, rather than just waiting and watching. There is data, though, that says chemo can severely weaken my immune system and getting aspiration pneumonia would be a real threat.
Both my oncologists offered chemotherapy as a preventative therapy for killing whatever cancer may still remain, at the same time agreeing that there is no evidence that it would do any good in my particular situation. “So what would you like to do, Mr. Landis?”
So, particularly because I am progressively feeling better and better, I decided to forego the chemo and go on with my life. If the cancer comes back, so be it. That’s the uncertainty that is a part of my life… and always will be. I could go all philosophical here and ruminate about everything in life being uncertain, but I’ll spare you that.
Tomorrow we head back up to Portland. I’ll get new CT scan to serve as a post-lung surgery baseline for the oncologists going forward. Then on Wednesday I’m having a fourth procedure on my throat, the injection laryngoplasty with my own fat, to try and improve my voice, and more importantly, swallowing.
Lure of Sierra, wild and free! — Aug 14, 2016
First of all, I feel great. Maybe a little tired, as today I did a 1200 yard swim workout, yesterday I hiked about 2,000’ of elevation gain on Black Crater and the day before did a six mile hike along the Metolius. I’m feeling pretty confident that I won’t fail on the seven day “Geezer Gambol” backpack trip we have planned in the Sierra later this month.
Mad and I planned to be leaving home just about now, but the zen monastery at Tassajara has been closed due to the big fire behind Big Sur. Therefore, our long planned retreat there is a no-go and we’ll be staying in Camp Sherman for another week. Not so bad, really, but it’s a long time since we have been home this much in the summer.
When I last posted here, we were due to head back up to Portland for another CT and an operation on my larynx.
Often when I talk to anyone now, they say, “Hey, Tom, your voice is back to normal.” Well, it’s pretty hoarse most of the time, which is not exactly normal, but it is much better. The tone is down in the low register that preceded my first surgery. Can you believe that this nagging problem has been hanging around for over a year? To refresh your memory, when they did the esophagectomy to remove the cancer, they inadvertently damaged my medial laryngeal nerve, the effect of which was to paralyze my left vocal chord. The operation I had two weeks ago was the fourth they have done to try and correct the problem. Will this time do the trick? Time will tell.
What did they do to me? After knocking me out, they took fat out of my belly… a mini liposuction so to speak, and injected it into my left vocal fold with a fancy caulk gun. Since it is paralyzed due to the nerve damage, the vocal chord just flops around in there, causing me voice and swallowing problems. Injecting fat into the fold stabilizes it, yet also allows it to vibrate. Now the right vocal chord can work more effectively and “plumping up” the vocal fold prevents food and drink from slipping past into my lungs, making it much easier to swallow.
What about the CT scan, you ask? Good news… it was clear of any evidence of cancer. This scan is my new base line, 2 months after my 1 year scan when they discovered the lung tumor. Since my cancer recurred once, there is a 50-50 chance it will come back again, so I must have scans every three months again to monitor for that possibility.
When I do my visualization exercises (sometime after I take my daily dose of Rick Simpson Oil, or RSO), I see my bodily systems clear of cancer. Let’s hope subsequent scans bear out the validity of my imagination. I use piranhas, sharks, and dolphins to look for and attack any errant cancer cells that are floating around in there. I also have a little guy in a tiny submarine, aka Captain Stoner, that cruises my blood stream. So far he hasn’t seen anything suspicious.
This will most likely be the last post for quite some time. My next scan is not scheduled until October. You probably won’t hear anything from me unless some unforeseen crisis comes about. Or maybe on how I did on the Sierra backpack. Therefore, no news is good news.
Oh… and something else that will interest you, though it’s a bit off the subject of my cancer voyage. Mad had a cougar encounter while hiking alone out in the woods a few days ago. I’ll let her explain.
~~~~
First sighting, besides tracks in snow, in 27 years of hiking and xc skiing around here-->thrilling! Haiku follow:
walking cross country
below the next bitterbrush
a cougar is poised!
tawny fur, long tail
when his head pops up
eternal instant
I know he heard me
walking on a deer trail
he crouched and waited
ten feet away
facing a mountain lion
who might be hungry
no time for fear
or even adrenaline
respect, caution
~
the mountain lion
still reverberating
in zazen
First of all, I feel great. Maybe a little tired, as today I did a 1200 yard swim workout, yesterday I hiked about 2,000’ of elevation gain on Black Crater and the day before did a six mile hike along the Metolius. I’m feeling pretty confident that I won’t fail on the seven day “Geezer Gambol” backpack trip we have planned in the Sierra later this month.
Mad and I planned to be leaving home just about now, but the zen monastery at Tassajara has been closed due to the big fire behind Big Sur. Therefore, our long planned retreat there is a no-go and we’ll be staying in Camp Sherman for another week. Not so bad, really, but it’s a long time since we have been home this much in the summer.
When I last posted here, we were due to head back up to Portland for another CT and an operation on my larynx.
Often when I talk to anyone now, they say, “Hey, Tom, your voice is back to normal.” Well, it’s pretty hoarse most of the time, which is not exactly normal, but it is much better. The tone is down in the low register that preceded my first surgery. Can you believe that this nagging problem has been hanging around for over a year? To refresh your memory, when they did the esophagectomy to remove the cancer, they inadvertently damaged my medial laryngeal nerve, the effect of which was to paralyze my left vocal chord. The operation I had two weeks ago was the fourth they have done to try and correct the problem. Will this time do the trick? Time will tell.
What did they do to me? After knocking me out, they took fat out of my belly… a mini liposuction so to speak, and injected it into my left vocal fold with a fancy caulk gun. Since it is paralyzed due to the nerve damage, the vocal chord just flops around in there, causing me voice and swallowing problems. Injecting fat into the fold stabilizes it, yet also allows it to vibrate. Now the right vocal chord can work more effectively and “plumping up” the vocal fold prevents food and drink from slipping past into my lungs, making it much easier to swallow.
What about the CT scan, you ask? Good news… it was clear of any evidence of cancer. This scan is my new base line, 2 months after my 1 year scan when they discovered the lung tumor. Since my cancer recurred once, there is a 50-50 chance it will come back again, so I must have scans every three months again to monitor for that possibility.
When I do my visualization exercises (sometime after I take my daily dose of Rick Simpson Oil, or RSO), I see my bodily systems clear of cancer. Let’s hope subsequent scans bear out the validity of my imagination. I use piranhas, sharks, and dolphins to look for and attack any errant cancer cells that are floating around in there. I also have a little guy in a tiny submarine, aka Captain Stoner, that cruises my blood stream. So far he hasn’t seen anything suspicious.
This will most likely be the last post for quite some time. My next scan is not scheduled until October. You probably won’t hear anything from me unless some unforeseen crisis comes about. Or maybe on how I did on the Sierra backpack. Therefore, no news is good news.
Oh… and something else that will interest you, though it’s a bit off the subject of my cancer voyage. Mad had a cougar encounter while hiking alone out in the woods a few days ago. I’ll let her explain.
~~~~
First sighting, besides tracks in snow, in 27 years of hiking and xc skiing around here-->thrilling! Haiku follow:
walking cross country
below the next bitterbrush
a cougar is poised!
tawny fur, long tail
when his head pops up
eternal instant
I know he heard me
walking on a deer trail
he crouched and waited
ten feet away
facing a mountain lion
who might be hungry
no time for fear
or even adrenaline
respect, caution
~
the mountain lion
still reverberating
in zazen
Three Month Reprieve — Nov 3, 2016
Friends, hop on my roller coaster and go for a wild ride with me.
When last I communicated with you, I indicated that no news would be good news. And so the summer progressed into autumn. We had lots of fun and I gained strength slowly but surely. I feel good… and everyone I encounter says, “You look good!” We went backpacking in the High Sierra, accomplished a lot at home getting ready for winter (& we built a woodshed!) and danced our feet off for five days at the jazz festival in Sun Valley.
My post-op CT scan in July showed no evidence of cancer, so over the last few months I have been guardedly optimistic that I might finally be free of the disease.
(Drum roll with sombre music) Monday we traveled to Portland for my three month followup scan. At my meeting Tuesday morning with Dr. Hunter, he came with the result. “You have a new 12mm suspicious nodule in your right lung.”
Dammit, dammit, dammit!!! A negative surge of adrenaline, then the thought, “Oh shit! Here we go again.” My happy life turned akimbo once again. Not that surprising, really, but very, very disappointing.
Dr. Hunter: “It could be just an inflammatory nodule, but given your history the greater likelihood is that your cancer has returned again. A PET scan at this point doesn't help determine what it is. At the GI ‘tumor board’ tomorrow, our experts from various disciplines will go over your case and make recommendations as to what your options are going forward.There are four things that can happen: it will stay the same, get smaller, get bigger, or more could show up."
At that moment his thought was that a likely course would be to wait six weeks, do another scan and see what developed, but it is not common to do another “wedge resection" of a 2nd lesion. If more appear, other treatment options are available, but my prospects for the future control of the disease, though not immediately dire, are limited.
I won’t go into detail about how Mad and I reacted later back at the hotel. Suffice it to say that it was a tough day emotionally and that tears were shed as we contemplated how this new reality would affect our future.
This is going somewhere good, though, so just bear with me for a couple more paragraphs.
Wednesday the tumor board met first thing in the morning. Waiting on tenterhooks is never fun, as everyone knows, and that’s where we were all morning. We expected to hear something from Dr. Hunter early on. Not only was he elected Chairman of the American Board of Surgery this year, but he was recently appointed interim Dean of OHSU medical school, so the man is insanely busy. He wasn't able to call us until early afternoon, at which time we had become pretty anxious to know my fate.
With jaw dropping suddenness our dread was transformed into relief. “The pathologist, having examined your current CT and comparing it to previous scans, is of the opinion that the suspicious node is very likely an inflammatory granuloma, and they are not sure it is cancerous. Since you have had lots of other granulomas that have appeared, just wait another 3 months until the next scan."
Wow, wow, wow!!! A three month reprieve! And, possibly, even though things are admittedly a bit murky, I may still be cancer free.
It was then with a spring in my step and a smile on my face that we went out to Jimmy Mak’s, our favorite Portland jazz club, for a lovely evening of fun, unencumbered by sombre issues below the surface. Looking to the future, we plan to do a lot of fun things in the next three months, but have not decided what yet. Go somewhere tropical this winter, perhaps?
(with the new format, you must click on a photo to see caption)
Friends, hop on my roller coaster and go for a wild ride with me.
When last I communicated with you, I indicated that no news would be good news. And so the summer progressed into autumn. We had lots of fun and I gained strength slowly but surely. I feel good… and everyone I encounter says, “You look good!” We went backpacking in the High Sierra, accomplished a lot at home getting ready for winter (& we built a woodshed!) and danced our feet off for five days at the jazz festival in Sun Valley.
My post-op CT scan in July showed no evidence of cancer, so over the last few months I have been guardedly optimistic that I might finally be free of the disease.
(Drum roll with sombre music) Monday we traveled to Portland for my three month followup scan. At my meeting Tuesday morning with Dr. Hunter, he came with the result. “You have a new 12mm suspicious nodule in your right lung.”
Dammit, dammit, dammit!!! A negative surge of adrenaline, then the thought, “Oh shit! Here we go again.” My happy life turned akimbo once again. Not that surprising, really, but very, very disappointing.
Dr. Hunter: “It could be just an inflammatory nodule, but given your history the greater likelihood is that your cancer has returned again. A PET scan at this point doesn't help determine what it is. At the GI ‘tumor board’ tomorrow, our experts from various disciplines will go over your case and make recommendations as to what your options are going forward.There are four things that can happen: it will stay the same, get smaller, get bigger, or more could show up."
At that moment his thought was that a likely course would be to wait six weeks, do another scan and see what developed, but it is not common to do another “wedge resection" of a 2nd lesion. If more appear, other treatment options are available, but my prospects for the future control of the disease, though not immediately dire, are limited.
I won’t go into detail about how Mad and I reacted later back at the hotel. Suffice it to say that it was a tough day emotionally and that tears were shed as we contemplated how this new reality would affect our future.
This is going somewhere good, though, so just bear with me for a couple more paragraphs.
Wednesday the tumor board met first thing in the morning. Waiting on tenterhooks is never fun, as everyone knows, and that’s where we were all morning. We expected to hear something from Dr. Hunter early on. Not only was he elected Chairman of the American Board of Surgery this year, but he was recently appointed interim Dean of OHSU medical school, so the man is insanely busy. He wasn't able to call us until early afternoon, at which time we had become pretty anxious to know my fate.
With jaw dropping suddenness our dread was transformed into relief. “The pathologist, having examined your current CT and comparing it to previous scans, is of the opinion that the suspicious node is very likely an inflammatory granuloma, and they are not sure it is cancerous. Since you have had lots of other granulomas that have appeared, just wait another 3 months until the next scan."
Wow, wow, wow!!! A three month reprieve! And, possibly, even though things are admittedly a bit murky, I may still be cancer free.
It was then with a spring in my step and a smile on my face that we went out to Jimmy Mak’s, our favorite Portland jazz club, for a lovely evening of fun, unencumbered by sombre issues below the surface. Looking to the future, we plan to do a lot of fun things in the next three months, but have not decided what yet. Go somewhere tropical this winter, perhaps?
(with the new format, you must click on a photo to see caption)
Gratitude — Nov 27, 2016 Sunday of Thanksgiving Weekend.
Thanksgiving is a time to express gratitude… and I am grateful for so many things. First, I am grateful to be alive. Next I am grateful that I feel good. Those are the biggies. I am grateful that I live in such an incredibly beautiful place, the Metolius Basin, a gem of natural splendor. And I hardly know what to say about Madeleine… I am grateful to her, for her, in so, so many ways. She has been my rock for these last two years of tempestuous happenings in our lives. Finally, but not least by any means, I am grateful for all the friends, family and acquaintances who have supported me with caring energy through difficult times.
I usually say in these messages that no news is good news, but today, in the spirit of the holiday, I want simply to let everyone know that I am okay. In fact, that I feel pretty damn good!
It was just two years ago that I started to feel the first niggles of discomfort that ultimately led in January of 2015 to the diagnosis of esophageal cancer. If you have been following along with me from the start, you know what an up and down journey that has been! I cannot say with any certitude that I am out of the woods yet, but I can feel the slow return of my stamina and strength. My lungs will never be quite the same again and I doubt I’ll get back the 20 pounds of muscle mass I’ve lost, but I am guardedly optimistic that if the cancer does not come back (the Big IF), I will be back to some semblance of my “new normal” Self pretty soon. I’ve started swim training again on a somewhat regular basis and my workout times are getting steadily better. Madeleine and I have been hiking along the river and up on Black Butte; we did six miles on the river last week and it felt pretty good. I wasn’t totally crapped out when I got home, at least.
Cancer brings with it a lot of uncertainty about a lot of things… and one tends to live from scan to scan, uncertain what the next one will bring and hoping that the results will be favorable. My next scan is January 30th. Prior to that, since no obvious cancer was apparent in my last scan, we are doing our best to enjoy life. Mad is going to Germany next month to visit her 92 year old aunt. In January we are going to the Caribbean to visit my old friend, Sally Bromfield, for a few weeks. A trip to the Bay Area for a Landis Family “solstice celebration” is in the offing, too, right after Madeleine returns from Europe in mid-December.
If the next scan shows that I am still clear of cancer, you can bet we’ll be planning ways of enjoying life further into spring and summer. Stay tuned… and know that, at the moment, things are going great!
Thank you, thank you all, for listening, for caring, for the support you give, both direct and indirect. It means so much to me and Mad to have you backing us up. And if this tome brings even a little bit of inspiration to someone, so much the better!
Thanksgiving is a time to express gratitude… and I am grateful for so many things. First, I am grateful to be alive. Next I am grateful that I feel good. Those are the biggies. I am grateful that I live in such an incredibly beautiful place, the Metolius Basin, a gem of natural splendor. And I hardly know what to say about Madeleine… I am grateful to her, for her, in so, so many ways. She has been my rock for these last two years of tempestuous happenings in our lives. Finally, but not least by any means, I am grateful for all the friends, family and acquaintances who have supported me with caring energy through difficult times.
I usually say in these messages that no news is good news, but today, in the spirit of the holiday, I want simply to let everyone know that I am okay. In fact, that I feel pretty damn good!
It was just two years ago that I started to feel the first niggles of discomfort that ultimately led in January of 2015 to the diagnosis of esophageal cancer. If you have been following along with me from the start, you know what an up and down journey that has been! I cannot say with any certitude that I am out of the woods yet, but I can feel the slow return of my stamina and strength. My lungs will never be quite the same again and I doubt I’ll get back the 20 pounds of muscle mass I’ve lost, but I am guardedly optimistic that if the cancer does not come back (the Big IF), I will be back to some semblance of my “new normal” Self pretty soon. I’ve started swim training again on a somewhat regular basis and my workout times are getting steadily better. Madeleine and I have been hiking along the river and up on Black Butte; we did six miles on the river last week and it felt pretty good. I wasn’t totally crapped out when I got home, at least.
Cancer brings with it a lot of uncertainty about a lot of things… and one tends to live from scan to scan, uncertain what the next one will bring and hoping that the results will be favorable. My next scan is January 30th. Prior to that, since no obvious cancer was apparent in my last scan, we are doing our best to enjoy life. Mad is going to Germany next month to visit her 92 year old aunt. In January we are going to the Caribbean to visit my old friend, Sally Bromfield, for a few weeks. A trip to the Bay Area for a Landis Family “solstice celebration” is in the offing, too, right after Madeleine returns from Europe in mid-December.
If the next scan shows that I am still clear of cancer, you can bet we’ll be planning ways of enjoying life further into spring and summer. Stay tuned… and know that, at the moment, things are going great!
Thank you, thank you all, for listening, for caring, for the support you give, both direct and indirect. It means so much to me and Mad to have you backing us up. And if this tome brings even a little bit of inspiration to someone, so much the better!
