We've set up this blog to share updates about Steve's health and treatment. Please bookmark and visit anytime to see the latest news. All posts will say they're posted by "Celeste," but will be written by Carol and Steve--Celeste is just the technical help.
If you would like to be notified of updates, you can subscribe using a blog reader (such as Google Reader)--paste the URL (steveshealthupdates.blogspot.com) into your reader.
If you'd like to get in touch, please email Carol directly.
Saturday, December 31, 2011
Friday, December 16, 2011
Update: December 16, 2011
Note: The following is Steve's update of December 16, 2011, reposted here for those who missed it or would like to catch up.
*******
Dear friends and family,
An update of progress and such over the last two weeks: nothing elaborate or extensive, but a
status report.
My radiation treatments are over. There were twelve of them, and I believe (and hope) they
were successful. Until we have further pictorial evidence--catscans, for example--I can go only
by how much easier it is to swallow. So far so good. Radiation doesn't hurt, and the technicians
at the Clinic couldn't have been better in terms of sensitivity and concern for my comfort, but
even they couldn't prevent the two chief aftereffects: nausea and fatigue, both of which took up
residence after each treatment. Now that I am not receiving daily doses of radiation, I am hoping
that they will diminish. I can swallow better, but there is nothing I want to eat, and if I do have a
few sips of something, it usually doesn't sit very well.
The oncologist wants to begin chemotherapy fairly soon. While I'd like to have a short period
of feeling not too bad between treatments, I understand his "the sooner the better" attitude.
Part of my discomfort might be caused by the as-of-yet untreated cancer in other parts of my
body, so delay is counterproductive. And who knows if I'll have that period of feeling not too
bad anyway? The chemo will go on for several months, apparently, and I can only hope that
aftereffects of those treatments will be a little milder than those of the radiation were. But there's
no reason to expect that. My first chemo treatment will be on the 28th, and proceed weekly from
then.
I've had some very nice visits during the past few weeks. My brother-in-law and niece came a
couple of weekends ago, and my sister-in-law is here now. A few friends have spent some time
with me, and I have enjoyed every one of those of visits. A very close friend is coming in from
the west coast in mid-January. Carol and I did get to play bridge the other night (and I think we
played well), but it was tiring and we had to call it a night at what normally would have been a
very early hour. But we did it, and we have the next bridge evening scheduled for our house.
All of the "hang in there" and "you can do this" and "we're thinking of you" and "let me know
what I can do for you," alongside the cards and books and such, are having their intended
effect. I can hardly look around from the chair where I spend most of my time and not see some
tangible symbol of your collective well wishes. What a team I have working for me!
I thought I might get double duty out of this message by including what would normally have
gone into our family holiday letter. Most of you receiving these messages would be getting that
too, so this year it will come electronically. After the obligatory "can you believe it's already
December 2011" section, and going on and on about adorable Dylan is, I would tell about three
trips we took this year. In May Carol and I had a wonderful trip to China, organized mostly by
Celeste's mother, Lily. We were a group of five--the two of us, Lily, and two other friends. We
visited Beijing, Xi'an, Guilin, Shanghai, and Guangzhou. Of course it was a highlights tour, and
our list of what we saw and did only hints at what the possibilities were. We especially enjoyed
the Great Wall and the Terra Cotta Soldiers, and in Guilin, the river cruise through the gumdrop
mountains. It was great. In September we went in the other direction and spent around nine
days in Switzerland hiking in the Alps. We arranged with John and Margaret Gleeson (he had
been the head master in the English school where I taught in the 80s) to meet them, and we
had a glorious time in some absolutely spectacular scenery. We had trails, meadows (acoustic
meadows, with the sound of cowbells seemingly everywhere), peaks and valleys and lakes. It
was one breathtaking vista after another. We did six or seven miles a day. It was unforgettable.
And now this.
For the third trip, I will not recount my illness or its treatment. The third major journey that I
took this year, the one I am still traveling on, is this journey toward an awareness of how much
love sits around us all the time, and how we tend to go about our daily lives without much
thought of it. We don't think enough about how many people truly care about us, or about how
much people need us to care about them. There's a paradox in here, because I'm saying that we
do have significant concern for each other, but we seem not to know it or its extent, especially at
the times when that knowledge can make a world of difference to someone in great need. I have
been extremely fortunate in having collected around myself over the years a cadre of expressive
and generous people, so I was able to learn quickly and unquestionably just how pervasive and
persuasive such expressions of affection can be. I believe we need to remember also that many
people need our love when they are not showing any outward visible signs, and that the world is
made a much better place for many people by the simple expression of a kind word or thought.
I hope I am able to provide comfort to others, to some of you, who I know are enduring your
own struggles, and repay what can be only a small portion of the great kindness so many have
shown to me. There are no great walls on this journey, or armies of clay soldiers. There are
no breathtaking panoramas. But there is hope, there is comfort, and there is love. It's the best
journey of them all.
I know that at this time of year many of you will be celebrating holidays with families and loved
ones, perhaps at home, perhaps as part of travels. Whatever your own situation, I hope you all
have restful, sustaining, rewarding visits and celebrations, and to the degree that my somewhat
weakened good wishes can contribute to your good times, you will let me add to your holiday
pleasures.
Steve
*******
Dear friends and family,
An update of progress and such over the last two weeks: nothing elaborate or extensive, but a
status report.
My radiation treatments are over. There were twelve of them, and I believe (and hope) they
were successful. Until we have further pictorial evidence--catscans, for example--I can go only
by how much easier it is to swallow. So far so good. Radiation doesn't hurt, and the technicians
at the Clinic couldn't have been better in terms of sensitivity and concern for my comfort, but
even they couldn't prevent the two chief aftereffects: nausea and fatigue, both of which took up
residence after each treatment. Now that I am not receiving daily doses of radiation, I am hoping
that they will diminish. I can swallow better, but there is nothing I want to eat, and if I do have a
few sips of something, it usually doesn't sit very well.
The oncologist wants to begin chemotherapy fairly soon. While I'd like to have a short period
of feeling not too bad between treatments, I understand his "the sooner the better" attitude.
Part of my discomfort might be caused by the as-of-yet untreated cancer in other parts of my
body, so delay is counterproductive. And who knows if I'll have that period of feeling not too
bad anyway? The chemo will go on for several months, apparently, and I can only hope that
aftereffects of those treatments will be a little milder than those of the radiation were. But there's
no reason to expect that. My first chemo treatment will be on the 28th, and proceed weekly from
then.
I've had some very nice visits during the past few weeks. My brother-in-law and niece came a
couple of weekends ago, and my sister-in-law is here now. A few friends have spent some time
with me, and I have enjoyed every one of those of visits. A very close friend is coming in from
the west coast in mid-January. Carol and I did get to play bridge the other night (and I think we
played well), but it was tiring and we had to call it a night at what normally would have been a
very early hour. But we did it, and we have the next bridge evening scheduled for our house.
All of the "hang in there" and "you can do this" and "we're thinking of you" and "let me know
what I can do for you," alongside the cards and books and such, are having their intended
effect. I can hardly look around from the chair where I spend most of my time and not see some
tangible symbol of your collective well wishes. What a team I have working for me!
I thought I might get double duty out of this message by including what would normally have
gone into our family holiday letter. Most of you receiving these messages would be getting that
too, so this year it will come electronically. After the obligatory "can you believe it's already
December 2011" section, and going on and on about adorable Dylan is, I would tell about three
trips we took this year. In May Carol and I had a wonderful trip to China, organized mostly by
Celeste's mother, Lily. We were a group of five--the two of us, Lily, and two other friends. We
visited Beijing, Xi'an, Guilin, Shanghai, and Guangzhou. Of course it was a highlights tour, and
our list of what we saw and did only hints at what the possibilities were. We especially enjoyed
the Great Wall and the Terra Cotta Soldiers, and in Guilin, the river cruise through the gumdrop
mountains. It was great. In September we went in the other direction and spent around nine
days in Switzerland hiking in the Alps. We arranged with John and Margaret Gleeson (he had
been the head master in the English school where I taught in the 80s) to meet them, and we
had a glorious time in some absolutely spectacular scenery. We had trails, meadows (acoustic
meadows, with the sound of cowbells seemingly everywhere), peaks and valleys and lakes. It
was one breathtaking vista after another. We did six or seven miles a day. It was unforgettable.
And now this.
For the third trip, I will not recount my illness or its treatment. The third major journey that I
took this year, the one I am still traveling on, is this journey toward an awareness of how much
love sits around us all the time, and how we tend to go about our daily lives without much
thought of it. We don't think enough about how many people truly care about us, or about how
much people need us to care about them. There's a paradox in here, because I'm saying that we
do have significant concern for each other, but we seem not to know it or its extent, especially at
the times when that knowledge can make a world of difference to someone in great need. I have
been extremely fortunate in having collected around myself over the years a cadre of expressive
and generous people, so I was able to learn quickly and unquestionably just how pervasive and
persuasive such expressions of affection can be. I believe we need to remember also that many
people need our love when they are not showing any outward visible signs, and that the world is
made a much better place for many people by the simple expression of a kind word or thought.
I hope I am able to provide comfort to others, to some of you, who I know are enduring your
own struggles, and repay what can be only a small portion of the great kindness so many have
shown to me. There are no great walls on this journey, or armies of clay soldiers. There are
no breathtaking panoramas. But there is hope, there is comfort, and there is love. It's the best
journey of them all.
I know that at this time of year many of you will be celebrating holidays with families and loved
ones, perhaps at home, perhaps as part of travels. Whatever your own situation, I hope you all
have restful, sustaining, rewarding visits and celebrations, and to the degree that my somewhat
weakened good wishes can contribute to your good times, you will let me add to your holiday
pleasures.
Steve
Sunday, December 4, 2011
Update: December 4, 2011
Note: The following is Steve's update of December 4, 2011, reposted here for those who missed it or would like to catch up.
*********
Dear friends and family,
Last Sunday I sent out an update that outlined what we expected to be going on during the
coming week, and then on Monday the whole shebang took a sharp turn to the left. After my
radiation treatments began on Friday, I found it increasingly difficult to swallow (just when I had
been thinking that things were getting better there), and by Monday I was hardly able to consume
anything. We estimated perhaps 50 calories on Monday. So when I saw the radiation oncologist
after Monday's treatment, she determined that I needed to have the feeding tube inserted as soon
as possible, and I was admitted to the hospital as an emergency patient on Monday evening.
The hospital story could be a very long one, but I haven't got the energy to tell it. Suffice it to
say that I had the surgery on Wednesday (how ironic--that was the day it had been scheduled for
originally), and I came home on Friday. I now have a feeding tube through which I am currently
receiving all my nourishment. That will continue until such time as I can supplement that with
food by mouth, but right now, even though I can swallow small sips of water, we are relying on
the tube for all of it. That means I am connected to a pump, and therefore the electricity in the
wall, and so I am limited in my movement. I can disconnect if I need to, and occasionally I do
(such as now), but by and large I am tethered to the apparatus and it goes where I go.
Radiation continues on weekday afternoons, and we are hoping to see progress on that front.
I did not get to play bridge the other night. Several of you commented on that detail from what I
wrote before. Our next game will be in a couple of weeks, and we will try again.
In general I am feeling a little stronger each day, and while Boredom is a fairly constant
companion, it is little by little taking the place of Discomfort.
I make no predictions for the coming week except for more of the same. Carol continues to be as
dependable and unflagging a helpmeet as one could want.
I thank you all again for the many, many messages of good wishes. It is much easier to remain
positive when surrounded by positive people (unlike my roommates at the hospital--someday I
may have to tell that story), and so you are providing me a great service. Several of you wrote
extended messages that I want to respond do individually, and when I can, I will.
Steve
*********
Dear friends and family,
Last Sunday I sent out an update that outlined what we expected to be going on during the
coming week, and then on Monday the whole shebang took a sharp turn to the left. After my
radiation treatments began on Friday, I found it increasingly difficult to swallow (just when I had
been thinking that things were getting better there), and by Monday I was hardly able to consume
anything. We estimated perhaps 50 calories on Monday. So when I saw the radiation oncologist
after Monday's treatment, she determined that I needed to have the feeding tube inserted as soon
as possible, and I was admitted to the hospital as an emergency patient on Monday evening.
The hospital story could be a very long one, but I haven't got the energy to tell it. Suffice it to
say that I had the surgery on Wednesday (how ironic--that was the day it had been scheduled for
originally), and I came home on Friday. I now have a feeding tube through which I am currently
receiving all my nourishment. That will continue until such time as I can supplement that with
food by mouth, but right now, even though I can swallow small sips of water, we are relying on
the tube for all of it. That means I am connected to a pump, and therefore the electricity in the
wall, and so I am limited in my movement. I can disconnect if I need to, and occasionally I do
(such as now), but by and large I am tethered to the apparatus and it goes where I go.
Radiation continues on weekday afternoons, and we are hoping to see progress on that front.
I did not get to play bridge the other night. Several of you commented on that detail from what I
wrote before. Our next game will be in a couple of weeks, and we will try again.
In general I am feeling a little stronger each day, and while Boredom is a fairly constant
companion, it is little by little taking the place of Discomfort.
I make no predictions for the coming week except for more of the same. Carol continues to be as
dependable and unflagging a helpmeet as one could want.
I thank you all again for the many, many messages of good wishes. It is much easier to remain
positive when surrounded by positive people (unlike my roommates at the hospital--someday I
may have to tell that story), and so you are providing me a great service. Several of you wrote
extended messages that I want to respond do individually, and when I can, I will.
Steve
Sunday, November 27, 2011
Update: November 27, 2011
Note: The following is Steve's update of November 27, 2011, reposted here for those who missed it or would like to catch up.
**********
Dear friends and family,
I wish I could tell you all that the encouraging words and supporting energy you are sending
my way were making me feel better. That would not be true. They are, however, helping me
to remain positive, and I am grateful for that. I believe that a positive attitude coupled with the
medical procedures that I am receiving will go far in bringing me to a much better condition than
what I am in now. I am counting on the doctors, nurses, and technicians to give me the medical
treatments I need, and all of you to give me the psychological and emotional help.
I began my radiation treatments this week. I've had two visits, and I am scheduled for ten more.
The radiation itself is painless. The aftereffects vary a lot from patient to patient. I think in my
case I am experiencing more fatigue (even more fatigue) and a loss of appetite. I don't know
how one can lose what one doesn't have, but I have noticed that before the treatment began on
Friday, I was able to increase my caloric intake by a few hundred each day--not to the level I
am aiming for, but at least heading in the right direction. Yesterday I ate much less, and today
hardly at all. So that's where that is right now.
There was a kind of turf war, it seemed to me, going on over my treatment this week. The
oncologist we saw last week referred my case to two doctors, the radiation oncologist at the
Cleveland Clinic, who would be directing my radiation treatment, and a surgeon at Kaiser who
would insert a feeding tube into my stomach to help me improve my nutrition. Unfortunately,
the schedules were mutually exclusive, and each of them thought that she had the more urgent
claim. I was willing to go where I was sent, but they worked it out, and the result is that the
radiation is coming first, with the idea that it will shrink the tumor and allow me to swallow with
less discomfort, and the surgery will follow on December 13, with the result that I will then be
able to receive much greater amounts of food and build my strength for the chemotherapy that
will follow. So far the radiation seems to be doing its job. Even though I am tired and I find it
difficult to consume much food at all, the swallowing seems easier, and I have to hope that once
my body adjusts to the assault of the radiation, I will be able to increase my intake.
On the other hand, the radiation oncologist said that it is common for patients to lose 10% of
their body weight as a result of radiation treatment, so I've really got my work cut out for me.
But I will report that I had a very good Thanksgiving. My whole family was here (Melissa,
Matthew with Celeste and Dylan, and my brother Dennis with his wife Sharon), and a very
special friend joined us at the table for a dinner supplied by the kids. Just watching and playing
with Dylan over the weekend was a real joy. I found the weekend to be tiring, and maybe now
that everyone is gone, I'll get a little more rest and feel less exhausted. But that was exhaustion I
was glad to have.
The coming week will bring five more radiation sessions and a few other doctor's appointments.
If I can manage, I hope we'll be able to play bridge with our 40-year old bridge group on
Wednesday night. We'll see. I am not ready to toss it in yet.
Steve
**********
Dear friends and family,
I wish I could tell you all that the encouraging words and supporting energy you are sending
my way were making me feel better. That would not be true. They are, however, helping me
to remain positive, and I am grateful for that. I believe that a positive attitude coupled with the
medical procedures that I am receiving will go far in bringing me to a much better condition than
what I am in now. I am counting on the doctors, nurses, and technicians to give me the medical
treatments I need, and all of you to give me the psychological and emotional help.
I began my radiation treatments this week. I've had two visits, and I am scheduled for ten more.
The radiation itself is painless. The aftereffects vary a lot from patient to patient. I think in my
case I am experiencing more fatigue (even more fatigue) and a loss of appetite. I don't know
how one can lose what one doesn't have, but I have noticed that before the treatment began on
Friday, I was able to increase my caloric intake by a few hundred each day--not to the level I
am aiming for, but at least heading in the right direction. Yesterday I ate much less, and today
hardly at all. So that's where that is right now.
There was a kind of turf war, it seemed to me, going on over my treatment this week. The
oncologist we saw last week referred my case to two doctors, the radiation oncologist at the
Cleveland Clinic, who would be directing my radiation treatment, and a surgeon at Kaiser who
would insert a feeding tube into my stomach to help me improve my nutrition. Unfortunately,
the schedules were mutually exclusive, and each of them thought that she had the more urgent
claim. I was willing to go where I was sent, but they worked it out, and the result is that the
radiation is coming first, with the idea that it will shrink the tumor and allow me to swallow with
less discomfort, and the surgery will follow on December 13, with the result that I will then be
able to receive much greater amounts of food and build my strength for the chemotherapy that
will follow. So far the radiation seems to be doing its job. Even though I am tired and I find it
difficult to consume much food at all, the swallowing seems easier, and I have to hope that once
my body adjusts to the assault of the radiation, I will be able to increase my intake.
On the other hand, the radiation oncologist said that it is common for patients to lose 10% of
their body weight as a result of radiation treatment, so I've really got my work cut out for me.
But I will report that I had a very good Thanksgiving. My whole family was here (Melissa,
Matthew with Celeste and Dylan, and my brother Dennis with his wife Sharon), and a very
special friend joined us at the table for a dinner supplied by the kids. Just watching and playing
with Dylan over the weekend was a real joy. I found the weekend to be tiring, and maybe now
that everyone is gone, I'll get a little more rest and feel less exhausted. But that was exhaustion I
was glad to have.
The coming week will bring five more radiation sessions and a few other doctor's appointments.
If I can manage, I hope we'll be able to play bridge with our 40-year old bridge group on
Wednesday night. We'll see. I am not ready to toss it in yet.
Steve
Sunday, November 20, 2011
Update: November 20, 2011
Note: The following is Steve's update of November 20, 2011, reposted here for those who missed it or would like to catch up.
********
Dear friends and family,
So many people have sent encouraging and supportive messages. I never knew how powerful
the effect of such messages is. When I had been on the sending side of such communications,
I always thought that such a gesture, sincere as it might be, meant something, but was soon
displaced by the more significant issues of the moment. Now, on the receiving side, I see that
the power of these messages, singly and cumulatively, is that they can move aside even the most
grave and debilitating pressures that a person in my situation has to deal with. I never knew that
before. Thank you all for whatever you added to the cause.
I waited until the end of the week to send the update that many of you have asked for because
this week was full of office visits and tests, and I assumed that by Friday I would have a lot to
share. And I do. Unfortunately, the news is not good.
The most significant thing, and the only one I'll explain in any detail, is the result of the PET
scan I had on Friday. It shows that in addition to the tumor in my esophagus, the cancer has
spread to several other locations in my body, and therefore, surgery is not a viable treatment.
The doctors will shrink the esophagus tumor with radiation, and when that treatment is over, use
chemotherapy to try to control the spread of the cancer elsewhere. There are too many sites to
operate on--they can't surgically remove the spots from my lungs, my liver, my lymph nodes, etc.
Surgery on the esophagus is not advised in this case because the tumor is located near my lungs,
my stomach, my liver, my heart--it's a serious situation. Esophageal cancer is very aggressive
and spreads rapidly and far. There is a lot to deal with.
The radiation treatment will begin early in the week, perhaps Monday or Tuesday, with a
simulation visit during which the doctors will take images to see exactly where the different
organs in my body are so that they can plan the attack of radiation. It takes a few days to gather
all that information and interpret it, and then to plot out the treatment. The first actual radiation
dose will probably be the Monday after Thanksgiving. There will be two weeks of treatment,
Monday through Friday. After two weeks the radiation should be done, and when we see how I
responded to that and how strong I am, we can make decisions about the chemotherapy.
The doctors indicated that they don't see chemotherapy as a cure, only as an effort to control.
What else can I say without saying it?
I am told that I should notice some relief from the radiation almost immediately, relief in the
form of the tumor shrinking and my being able to swallow with less difficulty. Right now I am
getting by on an entirely liquid diet. Even applesauce is giving me a little bit of a challenge.
I hope you can appreciate the great cosmic irony here. Imagine my response to the macabre
situation of having everyone in my family and all my doctors telling me that I have to eat more,
eat more, eat more. The radiation oncologist even used the expression "fatten you up a little."
Of course, they are right. I have lost a lot of muscle and I am very weak. I am aiming for 2000
calories a day and have yet to break 1000, even though I am trying very hard. I have to get
stronger, and I'm hoping that once the radiation begins I will be able to swallow more and get
more food down. Even if nausea is a side effect, I believe that is responsive to anti-nausea drugs
and the overall effect will be for the better.
All of you who have written to me, as well as some who have not, are receiving this message,
and I invite you to share it with other friends whose addresses I may not have. I am looking
forward to a family gathering for Thanksgiving just as we have every year. I'll be in my chair
at the end of the table with a bottle of Boost, and I'll be thankful for my family and friends who
have gathered around me and offered (not to mention given) me so much support in what is
clearly the most difficult experience of my life. I hope you all have happy holiday gatherings,
and that you take a moment to appreciate the people who love and support you in whatever ways
you need them to. It shouldn't take a crisis to make us realize how our lives are so intertwined,
but sometimes it does.
I expect that I will be telling you more some time in the middle of the week following
Thanksgiving, when the radiation treatment is underway.
Steve
********
Dear friends and family,
So many people have sent encouraging and supportive messages. I never knew how powerful
the effect of such messages is. When I had been on the sending side of such communications,
I always thought that such a gesture, sincere as it might be, meant something, but was soon
displaced by the more significant issues of the moment. Now, on the receiving side, I see that
the power of these messages, singly and cumulatively, is that they can move aside even the most
grave and debilitating pressures that a person in my situation has to deal with. I never knew that
before. Thank you all for whatever you added to the cause.
I waited until the end of the week to send the update that many of you have asked for because
this week was full of office visits and tests, and I assumed that by Friday I would have a lot to
share. And I do. Unfortunately, the news is not good.
The most significant thing, and the only one I'll explain in any detail, is the result of the PET
scan I had on Friday. It shows that in addition to the tumor in my esophagus, the cancer has
spread to several other locations in my body, and therefore, surgery is not a viable treatment.
The doctors will shrink the esophagus tumor with radiation, and when that treatment is over, use
chemotherapy to try to control the spread of the cancer elsewhere. There are too many sites to
operate on--they can't surgically remove the spots from my lungs, my liver, my lymph nodes, etc.
Surgery on the esophagus is not advised in this case because the tumor is located near my lungs,
my stomach, my liver, my heart--it's a serious situation. Esophageal cancer is very aggressive
and spreads rapidly and far. There is a lot to deal with.
The radiation treatment will begin early in the week, perhaps Monday or Tuesday, with a
simulation visit during which the doctors will take images to see exactly where the different
organs in my body are so that they can plan the attack of radiation. It takes a few days to gather
all that information and interpret it, and then to plot out the treatment. The first actual radiation
dose will probably be the Monday after Thanksgiving. There will be two weeks of treatment,
Monday through Friday. After two weeks the radiation should be done, and when we see how I
responded to that and how strong I am, we can make decisions about the chemotherapy.
The doctors indicated that they don't see chemotherapy as a cure, only as an effort to control.
What else can I say without saying it?
I am told that I should notice some relief from the radiation almost immediately, relief in the
form of the tumor shrinking and my being able to swallow with less difficulty. Right now I am
getting by on an entirely liquid diet. Even applesauce is giving me a little bit of a challenge.
I hope you can appreciate the great cosmic irony here. Imagine my response to the macabre
situation of having everyone in my family and all my doctors telling me that I have to eat more,
eat more, eat more. The radiation oncologist even used the expression "fatten you up a little."
Of course, they are right. I have lost a lot of muscle and I am very weak. I am aiming for 2000
calories a day and have yet to break 1000, even though I am trying very hard. I have to get
stronger, and I'm hoping that once the radiation begins I will be able to swallow more and get
more food down. Even if nausea is a side effect, I believe that is responsive to anti-nausea drugs
and the overall effect will be for the better.
All of you who have written to me, as well as some who have not, are receiving this message,
and I invite you to share it with other friends whose addresses I may not have. I am looking
forward to a family gathering for Thanksgiving just as we have every year. I'll be in my chair
at the end of the table with a bottle of Boost, and I'll be thankful for my family and friends who
have gathered around me and offered (not to mention given) me so much support in what is
clearly the most difficult experience of my life. I hope you all have happy holiday gatherings,
and that you take a moment to appreciate the people who love and support you in whatever ways
you need them to. It shouldn't take a crisis to make us realize how our lives are so intertwined,
but sometimes it does.
I expect that I will be telling you more some time in the middle of the week following
Thanksgiving, when the radiation treatment is underway.
Steve
Saturday, November 12, 2011
Update: November 12, 2011
Note: The following is Steve's second update, from November 12, 2011, reposted here for those who missed it or would like to catch up.
**********
Dear friends and family,
Around a week ago I sent notices to many people about the downturn in my health. I did so with
some reservation, because while I thought my family and friends ought to know that a serious
situation had arisen, I didn't want to spread gloom and distress into your lives. You responded-
-nearly everyone to whom I sent a note--with such an astonishing outpouring of affection and
concern, support and well-wishing, that I was truly overwhelmed. I sat in front of my screen and
wept. While it may be true that laughter is the best medicine, there is a lot to be said for tears.
Most of you asked me to keep you informed of my progress, so I am sending a generic message
to all of you. While many of you wrote some very touching personal messages, I just cannot
respond to all of them individually right now. Maybe I'll be able to later, but I can't now. I hope
you understand. I read, reread, and treasure every one of them, and I thank you, inadequately I
am sure.
Many of you offered help, even some of you who live far away. Carol and I will no doubt take
some of you up on those offers. Right now we are managing most matters ourselves, but we
recognize that we may feel different later, and when the time comes, you will hear from us. The
problem that I foresee is that there are simply too many volunteers for the jobs that will need
doing, so some of you who offered so sincerely are not going to be called upon. But we thank
you anyway.
And some of you have passed my information along to others to whom I did not write in the first
place. Thank you very much for doing that. I obviously could not write to everyone, and you
have helped me a lot. I received several notes from people who heard from one of you, and I am
very grateful.
Now for the progress report, such as it is.
There was a change in plan last week and the surgeon I was originally scheduled to meet
determined that I needed the services of a thoracic surgeon, which was not his specialty, and he
referred me to another doctor at the Cleveland Clinic. It took several days to get an appointment
with the new surgeon--largely because of the bureaucratic intricacies of the referral system--but
I am on the books for Wednesday morning of this week. I am also seeing my own primary care
physician on Monday and an oncologist on Friday, so right now I have the feeling that things
are actually beginning to move. I am going to have a series of additional tests--a PET scan, a
pulmonary function test, an endoscopic sonogram, a stress test, and so on.
Now, as far as how I feel. I wish I could make a more upbeat report, but it wouldn't be the truth.
Through all of this I feel pretty much beaten up. I am unable to eat much of anything. I'm able
to swallow applesauce, frozen yogurt, sherbet, jello, and pudding. We're experimenting with
smoothies recipes. I can deal with about a quarter of a cup at a time. I consume something
like 500 calories a day, I'm guessing. Maybe less. At any rate, I'm losing weight very rapidly.
I'm down over 25 pounds in the last month. I have no stamina, and so I lie down, whether or
not I actually fall asleep, several times a day. I'm still not sleeping well at night, even with the
sleeping pill my doctor prescribed. I hope that one of these upcoming visits results in some
advice or procedure that helps alter this current state of affairs. I just feel, as I've said to some of
you before, as though somebody pulled the plug.
On the other hand, I have received enormous comfort from the kind words and encouragement of
so many people. If I begin to feel sorry for myself--and I don't very often--I have only to think
about my loving friends and family, and then I wonder how much luckier could a man be?
How remiss I would be if I didn't acknowledge that Carol has been an unflagging source of help
and understanding through all of this. I haven't needed anything that she hasn't been willing to
do. She once said "in sickness and in health," and she meant it. And my daughter and son and
daughter-in-law have, from their homes in Washington and Boston, worked tirelessly on my
behalf too. The whole family is pulling together, and I could not ask for better.
I have saved every one of your previous messages, and I would be very happy to hear from
you again. I expect to know something more by next weekend, and I will likely send another
message then. I may make use of a website that allows me to upload status reports and you to
access my information at your convenience. I'll let you know about that later.
In the meantime, thank you all very much for your love and concern.
Steve
**********
Dear friends and family,
Around a week ago I sent notices to many people about the downturn in my health. I did so with
some reservation, because while I thought my family and friends ought to know that a serious
situation had arisen, I didn't want to spread gloom and distress into your lives. You responded-
-nearly everyone to whom I sent a note--with such an astonishing outpouring of affection and
concern, support and well-wishing, that I was truly overwhelmed. I sat in front of my screen and
wept. While it may be true that laughter is the best medicine, there is a lot to be said for tears.
Most of you asked me to keep you informed of my progress, so I am sending a generic message
to all of you. While many of you wrote some very touching personal messages, I just cannot
respond to all of them individually right now. Maybe I'll be able to later, but I can't now. I hope
you understand. I read, reread, and treasure every one of them, and I thank you, inadequately I
am sure.
Many of you offered help, even some of you who live far away. Carol and I will no doubt take
some of you up on those offers. Right now we are managing most matters ourselves, but we
recognize that we may feel different later, and when the time comes, you will hear from us. The
problem that I foresee is that there are simply too many volunteers for the jobs that will need
doing, so some of you who offered so sincerely are not going to be called upon. But we thank
you anyway.
And some of you have passed my information along to others to whom I did not write in the first
place. Thank you very much for doing that. I obviously could not write to everyone, and you
have helped me a lot. I received several notes from people who heard from one of you, and I am
very grateful.
Now for the progress report, such as it is.
There was a change in plan last week and the surgeon I was originally scheduled to meet
determined that I needed the services of a thoracic surgeon, which was not his specialty, and he
referred me to another doctor at the Cleveland Clinic. It took several days to get an appointment
with the new surgeon--largely because of the bureaucratic intricacies of the referral system--but
I am on the books for Wednesday morning of this week. I am also seeing my own primary care
physician on Monday and an oncologist on Friday, so right now I have the feeling that things
are actually beginning to move. I am going to have a series of additional tests--a PET scan, a
pulmonary function test, an endoscopic sonogram, a stress test, and so on.
Now, as far as how I feel. I wish I could make a more upbeat report, but it wouldn't be the truth.
Through all of this I feel pretty much beaten up. I am unable to eat much of anything. I'm able
to swallow applesauce, frozen yogurt, sherbet, jello, and pudding. We're experimenting with
smoothies recipes. I can deal with about a quarter of a cup at a time. I consume something
like 500 calories a day, I'm guessing. Maybe less. At any rate, I'm losing weight very rapidly.
I'm down over 25 pounds in the last month. I have no stamina, and so I lie down, whether or
not I actually fall asleep, several times a day. I'm still not sleeping well at night, even with the
sleeping pill my doctor prescribed. I hope that one of these upcoming visits results in some
advice or procedure that helps alter this current state of affairs. I just feel, as I've said to some of
you before, as though somebody pulled the plug.
On the other hand, I have received enormous comfort from the kind words and encouragement of
so many people. If I begin to feel sorry for myself--and I don't very often--I have only to think
about my loving friends and family, and then I wonder how much luckier could a man be?
How remiss I would be if I didn't acknowledge that Carol has been an unflagging source of help
and understanding through all of this. I haven't needed anything that she hasn't been willing to
do. She once said "in sickness and in health," and she meant it. And my daughter and son and
daughter-in-law have, from their homes in Washington and Boston, worked tirelessly on my
behalf too. The whole family is pulling together, and I could not ask for better.
I have saved every one of your previous messages, and I would be very happy to hear from
you again. I expect to know something more by next weekend, and I will likely send another
message then. I may make use of a website that allows me to upload status reports and you to
access my information at your convenience. I'll let you know about that later.
In the meantime, thank you all very much for your love and concern.
Steve
Monday, November 7, 2011
Update: November 7, 2011
Note: The following is Steve's first update, from November 7, 2011, reposted here for any who missed it or would like to catch up on the news.
*****
Dear Friends,
I'm afraid I have some upsetting news to share with you, and I am sorry for bringing this into
your lives. I was told this week that I have developed cancer of the esophagus and the stomach.
This comes after about a month of feeling just plain miserable, being unable to swallow without
discomfort, having virtually no appetite but nonetheless an ongoing stomach ache, and a general
sense that the bottom has fallen out. I had a series of tests that included x-rays, a cat scan, and an
endoscopic examination. I will be seeing a surgeon on Wednesday, and I hope we can arrange
the start of a treatment very soon. I figure the sooner the treatment, the sooner the relief.
Treatment is likely to be surgery followed by chemotherapy or radiation, or some combination
of the two. I'm told the hospital stay might be two weeks, and recovery after that perhaps two
months. Even if those are the outer limits, this is going to be a long slog back.
I've chosen to tell each of you receiving this note because, and I don't know else to say this, if
such befell any of you I would certainly want to know--not that either of us can do anything for
each other, but because I don't think we can exist in unconnected vacuums. Whether or not I
have seen you recently or spoken to you recently, each of you is someone I care about, and I
don't want to be entirely out of touch. But I am asking all the people I am contacting, family
and friends, not to telephone me, even though the impulse to do so would be a kindhearted one.
I'm not sleeping well at night, and so I'm tired most of the time, and during the day I take a nap
almost any time I can actually fall asleep. So I'd rather not have the phone ringing. Besides
that, I don't relish the thought of explaining over and over what is going on. The best way to
communicate with me is via email, and I will keep anyone who wants to know my progress
informed that way.
Carol and I would like to go on as normally as possible for as long as we can. At some point that
will be unrealistic, but we will deal with that when the time comes.
I hope that whatever is occupying your attention in your own lives is bringing you more comfort
and pleasure than this! I hope I'll soon be able to share more upbeat news with you.
Steve
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