I've been a James Taylor fan for years, but never more than now.
We went to his concert at Tanglewood yesterday, which was a perfect event for someone in my situation.
First, is was a matinee, so I didn't have to struggle to stay awake. Next, he actually did about a half-hour's worth of extra songs because he heard a lot of people got stuck in traffic and missed the beginning of the show. And amazingly the sun shone most of the day.
He also displayed some humility, reminding the crowd it was OK to leave if they'd had enough of him as he launched into his second hour of singing. Not sure the last time I heard any humility from a performer at a concert.
He also donated some/all of the proceeds to Tanglewood, to help keep the important music tradition alive. The Berkshire venue is the summer home of the Boston Symphony Orchestra and lots of important music education. And he sang many of his old songs, like Sweet Baby James, On the Roof, etc.
Also need to mention that we got free tix, thanks to our friend Melissa Rifkin and her boyfriend Matt. Thanks Mel and Matt.
One of his new songs contained what sounded like some important words to live by: "The key is life is enjoying the passage of time.''
Wonder how you do that?
Monday, August 31, 2009
Saturday, August 29, 2009
Staying 'up'
When I heard recently that a friend had been diagnosed with cancer, my immediate reaction was to send sympathy and advice to keep his spirits up.
That's what people have been telling me for close to three months now, and I greatly appreciate such sentiments, especially as I realize more each day how difficult it is.
Like most health issues, I suppose, cancer has an unrelenting aspect to it that has to be faced every day - indeed almost every minute of every day. Facing it with a positive, can-do attitude all the time is, in my experience, impossible.
Sometimes when I'm having a bad day or get some bad news, I just feel like breaking down, and I do. I have cried more in the last three months, I suspect, than in the last 60 years. ( I was a colicky baby)
But that release helps me to regroup and then try to stay positive most of the time, especially since I'm blessed with sympathetic shoulders to cry on. Bouncing back is important because there's a widespread consensus in the medical community that attitude directly affects how the body fights cancer and other problems.
The mind-body connection was once disputed, but, from what I've been told, no more. Staying positive is probably the most important, and one of the most difficult, things a cancer patient has to do.
The ultimate goal, as one well wisher put it today, is to have this time some day to be a "dim but formative memory.'' Amen.
That's what people have been telling me for close to three months now, and I greatly appreciate such sentiments, especially as I realize more each day how difficult it is.
Like most health issues, I suppose, cancer has an unrelenting aspect to it that has to be faced every day - indeed almost every minute of every day. Facing it with a positive, can-do attitude all the time is, in my experience, impossible.
Sometimes when I'm having a bad day or get some bad news, I just feel like breaking down, and I do. I have cried more in the last three months, I suspect, than in the last 60 years. ( I was a colicky baby)
But that release helps me to regroup and then try to stay positive most of the time, especially since I'm blessed with sympathetic shoulders to cry on. Bouncing back is important because there's a widespread consensus in the medical community that attitude directly affects how the body fights cancer and other problems.
The mind-body connection was once disputed, but, from what I've been told, no more. Staying positive is probably the most important, and one of the most difficult, things a cancer patient has to do.
The ultimate goal, as one well wisher put it today, is to have this time some day to be a "dim but formative memory.'' Amen.
Friday, August 28, 2009
Infusionless Friday
For the first time in four weeks, today I spent a Friday without getting chemotherapy.
The regimen I'm on calls for three weeks of what are called infusions (drips of medication from an IV bag into the bloodstream) , then a week to recover. I will repeat the process starting next week before getting a CT Scan in Boston in about a month to measure what the drug and the cancer have been doing lately.
I'm looking forward to a week without battling the effects of the drug, which like all anti-cancer medications attacks some good cells along with the bad (any cell that divides quickly). One common side effect that has been lacking is loss of hair, which I know doesn't do me that much good. I actually had to get a haircut yesterday and no, I get no discount for only having half a head of hair to begin with. But thanks for asking.
For the next round I will get the treatment on Thursdays instead of Fridays. The day after the infusion seems like the one with the biggest effect, so we decided it would be better if I were laid low Fridays rather than Saturdays.
Just for old times sake (actually for a blood test) Janice and I went to the chemo center today. I was again struck by the sociability and cheery disposition of the nurses and other staff which removes much of the grimness from the whole business.
There are a lot of worse things in life than getting cancer treatments.
The regimen I'm on calls for three weeks of what are called infusions (drips of medication from an IV bag into the bloodstream) , then a week to recover. I will repeat the process starting next week before getting a CT Scan in Boston in about a month to measure what the drug and the cancer have been doing lately.
I'm looking forward to a week without battling the effects of the drug, which like all anti-cancer medications attacks some good cells along with the bad (any cell that divides quickly). One common side effect that has been lacking is loss of hair, which I know doesn't do me that much good. I actually had to get a haircut yesterday and no, I get no discount for only having half a head of hair to begin with. But thanks for asking.
For the next round I will get the treatment on Thursdays instead of Fridays. The day after the infusion seems like the one with the biggest effect, so we decided it would be better if I were laid low Fridays rather than Saturdays.
Just for old times sake (actually for a blood test) Janice and I went to the chemo center today. I was again struck by the sociability and cheery disposition of the nurses and other staff which removes much of the grimness from the whole business.
There are a lot of worse things in life than getting cancer treatments.
Thursday, August 27, 2009
Remembering Ted Kennedy
I can still remember driving from Boston to Cape Cod for a weekend retreat 40 summers ago and hearing first the news on the radio about men landing on the moon, and then about Ted Kennedy's accident on Chappaquiddick Island.
I had been in the news biz only a few weeks, but had figured out even then that Ted was lucky that something else had happened to take the focus off of what looked like his atrocious behavior that might have cost a young woman, Mary Jo Kopechne, her life. He swam out of the submerged car which he had driven off a bridge while she drowned. Yet the senator's actions weren't even the lead story in the next day's newspapers thanks to Neil Armstrong et al.
One could argue that Kennedy, who died from brain cancer this week, paid dearly for his mistakes, since they likely cost him the presidency. But a woman died, he failed to report the accident to the police until hours had elapsed (and his blood-alcohol content had probably subsided). Iif his name wasn't Kennedy he might well have have spent some time behind bars.
I interviewed Kennedy a little over a year later, when he was running for re-election to the Senate and I was a fresh-faced reporter at the Waltham (Mass) News Tribune. Have to admit I didn't have the nerve to ask him any Chappaquiddick questions. My editor said it had been rehashed enough. We stuck to Vietnam and the economy and some recollections of his martyred brothers.
The next time I remember paying close attention in person to what he said was at the 1984 Democratic convention, when he delivered a rousing speech, the catchline of which was "except Ronald Reagan,'' to emphasize how out of touch he thought the president was (not that out of touch. He was overwhelmingly re-elected three months later.) Kennedy spoke the same night that Mario Cuomo gave his masterful "shining city on a hill'' keynote, which had all of us New York reporters dreaming about going around the country on Air Force One. That was before Cuomo turned out to be a 20th Century version of Hamlet.
I remember thinking that night how Kennedy had developed as a speaker and as a politician.
Today's stories of Kennedy's death today emphasized how the realization that Chappaquiddick blocked him from the presidency made him focus on his job in the Senate, where he had a truly distinguished career.
Funny what it takes sometimes for politicians to stop worrying about climbing the ladder and concentrate on what they were elected to do.
The stories also talked about his desire to have a "good ending,'' to make his last days alive as productive and meaningful as possible. That's an admirable trait in anyone.
I had been in the news biz only a few weeks, but had figured out even then that Ted was lucky that something else had happened to take the focus off of what looked like his atrocious behavior that might have cost a young woman, Mary Jo Kopechne, her life. He swam out of the submerged car which he had driven off a bridge while she drowned. Yet the senator's actions weren't even the lead story in the next day's newspapers thanks to Neil Armstrong et al.
One could argue that Kennedy, who died from brain cancer this week, paid dearly for his mistakes, since they likely cost him the presidency. But a woman died, he failed to report the accident to the police until hours had elapsed (and his blood-alcohol content had probably subsided). Iif his name wasn't Kennedy he might well have have spent some time behind bars.
I interviewed Kennedy a little over a year later, when he was running for re-election to the Senate and I was a fresh-faced reporter at the Waltham (Mass) News Tribune. Have to admit I didn't have the nerve to ask him any Chappaquiddick questions. My editor said it had been rehashed enough. We stuck to Vietnam and the economy and some recollections of his martyred brothers.
The next time I remember paying close attention in person to what he said was at the 1984 Democratic convention, when he delivered a rousing speech, the catchline of which was "except Ronald Reagan,'' to emphasize how out of touch he thought the president was (not that out of touch. He was overwhelmingly re-elected three months later.) Kennedy spoke the same night that Mario Cuomo gave his masterful "shining city on a hill'' keynote, which had all of us New York reporters dreaming about going around the country on Air Force One. That was before Cuomo turned out to be a 20th Century version of Hamlet.
I remember thinking that night how Kennedy had developed as a speaker and as a politician.
Today's stories of Kennedy's death today emphasized how the realization that Chappaquiddick blocked him from the presidency made him focus on his job in the Senate, where he had a truly distinguished career.
Funny what it takes sometimes for politicians to stop worrying about climbing the ladder and concentrate on what they were elected to do.
The stories also talked about his desire to have a "good ending,'' to make his last days alive as productive and meaningful as possible. That's an admirable trait in anyone.
Wednesday, August 26, 2009
Private citizen
Last night may have been the first time I have been a political event in the last 40 years without a notebook in my pocket.
As a kind of busman's holiday, I went to a forum sponsored by our local congressman, Paul Tonko, on health-care reform held at our town park. This is the kind of forum that has drawn rabid responses around the country.
Ours did not disappoint. A couple of thousand people were there, backing up traffic almost from an intersection near our house to the park, a couple of miles distant.
There were absurd signs ("Get government out of health care'') ridiculous suggestions ("Explain the deficit in terms my ((pre-school)) children can understand'') and lots of nasty yelling and back talk. Tonko managed to both get too bogged down in specifics and too general almost simultaneously, and threw in plenty of jargon as well. But he should certainly earn points for accessibility. One Dem I talked to said there's fear that the issue could hurt the party in local elections this fall.
Overall it was fun and nice not to worry about such details as getting names and quotes and a reliable crowd estimate and hanging around to the end to make sure no real news happened.
It occured to me only for a moment to add my two cents, and point out that one reason medical costs are so high is people like me who place big demands on the system. People get sick, want the best treatment available and want insurance, or somebody else, to pay for it. That urge passed pretty quickly though.
I saw some newsies and a couple of Capitol lobbyists at the event. The consensus was I look good, and shouldn't mourn the 20 pounds I have dropped. But enough is enough.
As a kind of busman's holiday, I went to a forum sponsored by our local congressman, Paul Tonko, on health-care reform held at our town park. This is the kind of forum that has drawn rabid responses around the country.
Ours did not disappoint. A couple of thousand people were there, backing up traffic almost from an intersection near our house to the park, a couple of miles distant.
There were absurd signs ("Get government out of health care'') ridiculous suggestions ("Explain the deficit in terms my ((pre-school)) children can understand'') and lots of nasty yelling and back talk. Tonko managed to both get too bogged down in specifics and too general almost simultaneously, and threw in plenty of jargon as well. But he should certainly earn points for accessibility. One Dem I talked to said there's fear that the issue could hurt the party in local elections this fall.
Overall it was fun and nice not to worry about such details as getting names and quotes and a reliable crowd estimate and hanging around to the end to make sure no real news happened.
It occured to me only for a moment to add my two cents, and point out that one reason medical costs are so high is people like me who place big demands on the system. People get sick, want the best treatment available and want insurance, or somebody else, to pay for it. That urge passed pretty quickly though.
I saw some newsies and a couple of Capitol lobbyists at the event. The consensus was I look good, and shouldn't mourn the 20 pounds I have dropped. But enough is enough.
Tuesday, August 25, 2009
Happy anniversary
Today is the two-month anniversary of my abdominal surgery. Time flies when you're having fun.
Back on June 25, the doc in Boston was unable to get the tumor on my pancreas out (too tightly wrapped around a vital artery) but he did rearrange my digestive tract to get it out of harm's way at least temporarily and inserted some markers into the mass which is supposed to make radiation therapy more effective when I undergo that later this fall.
I was comparing scars with someone today and it's nice to see my nine-inch gash will fade eventually. I still feel a little tightness in my gut and my abs aren't exactly washboard strength, but otherwise have no ill effects from the eight-hour procedure. I suspect some situps are in my future.
Lots of water under the bridge (also over the dam) since then. Some hard-earned wisdom, improved perspective and better understanding of life have come my way, along with true awe at how nice people can be.
There of course have also been less pleasant experiences. What does it feel like not to be tired?
Back on June 25, the doc in Boston was unable to get the tumor on my pancreas out (too tightly wrapped around a vital artery) but he did rearrange my digestive tract to get it out of harm's way at least temporarily and inserted some markers into the mass which is supposed to make radiation therapy more effective when I undergo that later this fall.
I was comparing scars with someone today and it's nice to see my nine-inch gash will fade eventually. I still feel a little tightness in my gut and my abs aren't exactly washboard strength, but otherwise have no ill effects from the eight-hour procedure. I suspect some situps are in my future.
Lots of water under the bridge (also over the dam) since then. Some hard-earned wisdom, improved perspective and better understanding of life have come my way, along with true awe at how nice people can be.
There of course have also been less pleasant experiences. What does it feel like not to be tired?
Monday, August 24, 2009
Me and Bernie
My first reaction to the New York Post story today that Bernie Madoff, the notorious swindler, has pancreatic cancer, was there is some justice in the world. But on further reflection I decided I wouldn't wish it on anybody.
The story, denied later in the day by federal prison officials, is that he is taking as many as 20 pills a day while behind bars and is not doing well. His lawyer wouldn't comment on his condition. I hope the story is wrong.
Obviously my antennae perk up when I hear "pancreatic cancer'' these days, and am delighted to hear survival stories like Patrick Swayze's. I also read obits of people like 60 Minutes producer Don Hewitt who succumbed to the disease, with a closer eye than I would otherwise.
But generally I'm far less curious about other people's experiences with pancreatic cancer than I would have supposed before my diagnosis. Every case is unique, and generalizations I find not useful. I find it's hard enough just to think about my own situation.
Just have to mention one other news story today: NY Times reports that some people think the state needs a constitutional convention in the wake of this year's scandals and dysfunction so that state government can be reshaped. (One idea is to eliminate the state Senate and just go with one house, as Nebraska does. I understand the appeal of that). This was one of the first stories I did when I got to the Capitol 25 years ago. People even then thought state government was a mess in New York.
A dozen years ago I was responsible for spilling a lot of ink on the topic, (that means I wrote a lot of stories) which was on the ballot that year and will be again in 2017. (Voters said no to a convention by a margin of greater than 2 to 1 in 1997). The arguments either side of the issue, based on today's story, haven't changed a bit in the intervening years.
Nice to know some things don't change... And I hope Bernie Madoff gets to serve a long prison sentence.
The story, denied later in the day by federal prison officials, is that he is taking as many as 20 pills a day while behind bars and is not doing well. His lawyer wouldn't comment on his condition. I hope the story is wrong.
Obviously my antennae perk up when I hear "pancreatic cancer'' these days, and am delighted to hear survival stories like Patrick Swayze's. I also read obits of people like 60 Minutes producer Don Hewitt who succumbed to the disease, with a closer eye than I would otherwise.
But generally I'm far less curious about other people's experiences with pancreatic cancer than I would have supposed before my diagnosis. Every case is unique, and generalizations I find not useful. I find it's hard enough just to think about my own situation.
Just have to mention one other news story today: NY Times reports that some people think the state needs a constitutional convention in the wake of this year's scandals and dysfunction so that state government can be reshaped. (One idea is to eliminate the state Senate and just go with one house, as Nebraska does. I understand the appeal of that). This was one of the first stories I did when I got to the Capitol 25 years ago. People even then thought state government was a mess in New York.
A dozen years ago I was responsible for spilling a lot of ink on the topic, (that means I wrote a lot of stories) which was on the ballot that year and will be again in 2017. (Voters said no to a convention by a margin of greater than 2 to 1 in 1997). The arguments either side of the issue, based on today's story, haven't changed a bit in the intervening years.
Nice to know some things don't change... And I hope Bernie Madoff gets to serve a long prison sentence.
Sunday, August 23, 2009
A Celebration
Jay, Emily, Allyson & Ellen at Beth & Andre's weddingYesterday was the first time I had worn long trousers and dress shoes since June 12th. The occasion was the marriage of our longtime friend and neighbor Beth Clement, a elementary school teacher, to Andre Ray, a state trooper from Plattsburgh. A good time was had by all.
Unlike the wedding party in the recent YouTube sensation of the wedding entrance dance (performed by friends of Ellen & Allyson's from Grinnell College), this bridal party played it straight coming down the aisle. But Beth and her dad Tom brought the house down with their surprise father-daughter dance. After starting out with some traditional slow dance, they broke into several hip hop line dance moves and included Shout as well.
Tom was in his glory, as he deserved to be, considering what the nights festivities probably set him back.
Beth, now 28, and her twin sister Carrie were born 4 days before Ellen in May of 1981. The Clements have lived across the cul-de-sac since we moved here in 1984.
Since it was the day after my latest chemo treatment, I was lacking in stamina but managed to attend the ceremony and eat a hearty a dinner at the reception as well as greet lots of friends and neighbors.
One big change from just a few months ago is that I'm a big hugger. Everybody I see I insist on putting my arms around. I think this sort of startled one woman this weekend who hadn't heard that I was sick.
But what the hell, I'll be a hugger for the rest of my life.
Friday, August 21, 2009
Time for a chemo break
The best way to look at chemo is I am done for 14 days - next week I get a break. Today's treatment, the third one I've been through, went fine, although I was stuck in the Yankee pod again. I requested the Sox pod for the next treatment, in two weeks. No Yank fan seemed alert enough today to give me grief for the sweep two weeks ago.
Best part of the experience today was being accompanied by a friend who is a cancer survivor and also went through chemo. She had plenty of practical advice and insights into the effects of chemo, especially mentally. Nice to know much of what I'm going through is "normal'' and to hear from someone who emerged from the other end of the ordeal with body and mind intact. Her stories also reminded me that chemo for other types of cancers tend to strike people harder than my treatment has hit me.
She also advised me that the third in a series of treatments is likely to have the biggest effect, since there tends to be a residual effect from the earlier sessions. Docs have told me that, but it didn't fully register before. She also said not to be afraid to scale back activities and commitments this week, since I'm likely to be more tired than I was before.
Right now the steroids that I get to counteract the effects of the chemo - although only half the dose I got two weeks ago - is giving me a little boost in energy. I can better understand where baseball players like Mark McGuire, Sammy Sosa, Jason Giambi etc. were coming from when they decided to use them.
Best part of the experience today was being accompanied by a friend who is a cancer survivor and also went through chemo. She had plenty of practical advice and insights into the effects of chemo, especially mentally. Nice to know much of what I'm going through is "normal'' and to hear from someone who emerged from the other end of the ordeal with body and mind intact. Her stories also reminded me that chemo for other types of cancers tend to strike people harder than my treatment has hit me.
She also advised me that the third in a series of treatments is likely to have the biggest effect, since there tends to be a residual effect from the earlier sessions. Docs have told me that, but it didn't fully register before. She also said not to be afraid to scale back activities and commitments this week, since I'm likely to be more tired than I was before.
Right now the steroids that I get to counteract the effects of the chemo - although only half the dose I got two weeks ago - is giving me a little boost in energy. I can better understand where baseball players like Mark McGuire, Sammy Sosa, Jason Giambi etc. were coming from when they decided to use them.
Thursday, August 20, 2009
Looking for a good lullaby
We discovered some new streets to bike around just a couple of miles from our house today by taking a different turn than we usually do. This occasioned a deep thought from Emily.
Funny how the solutions to problems and new opportunities can be so close, she said.
The metaphor here is the trouble I have been having sleeping, and the fact that the solution is undoubtedly just in my mind - just a few thoughts away. The trick is to empty the mind of other matters - especially the thought that not being able to sleep is going to ruin the next day, which is of course a self-fulfilling prophecy.
I'm working on it. It's even harder than ferreting out pork-barrel spending in the state budget.
Round three of chemo is tomorrow. Then I get a week off before a second series of three "infusions'' in September.
The Times has a reporter, Dana Jennings, who has been blogging about his battle with prostate cancer, which seems to be going well. He had a print column the other day about how depressing oncology waiting rooms are in comparison with other doc's waiting areas, which of course are grim enough, with blaring TVs, long waits and 10-year-old magazines.
But he said those are better than oncology offices, which are much quieter because everyone seems exhausted as well as otherwise obviously not in the best spirits.
I'm fortunate that the treatment area here is not like that. The staff seems to have figured out a way to keep the atmosphere light. I might even catch a nap tomorrow.
Funny how the solutions to problems and new opportunities can be so close, she said.
The metaphor here is the trouble I have been having sleeping, and the fact that the solution is undoubtedly just in my mind - just a few thoughts away. The trick is to empty the mind of other matters - especially the thought that not being able to sleep is going to ruin the next day, which is of course a self-fulfilling prophecy.
I'm working on it. It's even harder than ferreting out pork-barrel spending in the state budget.
Round three of chemo is tomorrow. Then I get a week off before a second series of three "infusions'' in September.
The Times has a reporter, Dana Jennings, who has been blogging about his battle with prostate cancer, which seems to be going well. He had a print column the other day about how depressing oncology waiting rooms are in comparison with other doc's waiting areas, which of course are grim enough, with blaring TVs, long waits and 10-year-old magazines.
But he said those are better than oncology offices, which are much quieter because everyone seems exhausted as well as otherwise obviously not in the best spirits.
I'm fortunate that the treatment area here is not like that. The staff seems to have figured out a way to keep the atmosphere light. I might even catch a nap tomorrow.
Wednesday, August 19, 2009
Renewal
We know three couples who are being married Saturday. It's probably because of the age of our children and our friends, who are parents of the happy couples, but it seems like marriages have reached a cresendo this year and in fact this month. There also seem to be babies everywhere I look, and sources tell me there is a connection.
The signs of renewal are particularly welcome for me now. Life goes on and will continue to do so.
...Addendum on closing state parks. A friend has written to the gov and the parks commish and pointed out that a problem with closing parks is that people still go to them even when there are no lifeguards or attendants. Thus closed parks are actually a hazard - we did see a few people being scofflaws and swimming at the Thompson's Lake beach yesterday. Posting guards would keep people out, but that of course would be even more expensive than keeping them open. Still waiting for an answer from the official.
.... Addendum on canal operations: OK, the canal ain't cheap. The state Thruway Authority, which we all support with highway tolls, planned to spend $395 million on operations and upkeep 08-'12, according to an '07 report. It takes in only $2 million a year from tolls on the canal.
So it's not as simple in just taking money away from the Legislature to save the canal. Comptroller Tom DiNapoli said the state should consider leasing or selling adjoining land to pay for it. Sounds good, but the last time that was considered it turned out to be a giveaway to someone with political connections. Maybe that's worth looking at again.
It would be nice if all of those children the new couples are going to produce would still have state parks to go to and a canal system to enjoy in the coming decades.
The signs of renewal are particularly welcome for me now. Life goes on and will continue to do so.
...Addendum on closing state parks. A friend has written to the gov and the parks commish and pointed out that a problem with closing parks is that people still go to them even when there are no lifeguards or attendants. Thus closed parks are actually a hazard - we did see a few people being scofflaws and swimming at the Thompson's Lake beach yesterday. Posting guards would keep people out, but that of course would be even more expensive than keeping them open. Still waiting for an answer from the official.
.... Addendum on canal operations: OK, the canal ain't cheap. The state Thruway Authority, which we all support with highway tolls, planned to spend $395 million on operations and upkeep 08-'12, according to an '07 report. It takes in only $2 million a year from tolls on the canal.
So it's not as simple in just taking money away from the Legislature to save the canal. Comptroller Tom DiNapoli said the state should consider leasing or selling adjoining land to pay for it. Sounds good, but the last time that was considered it turned out to be a giveaway to someone with political connections. Maybe that's worth looking at again.
It would be nice if all of those children the new couples are going to produce would still have state parks to go to and a canal system to enjoy in the coming decades.
Tuesday, August 18, 2009
Only in New York
The only problem with sitting by the water at a friend's cottage on Thompson's Lake near here today was looking across at the state park - and seeing that it was mostly empty.
On a sunny, plus-90-degree day in August? What gives?
Turns out some state parks are closed for part of every week this season because of the state's fiscal problems.
And for those keeping score this IS the same state where newspapers reported today that four members of the Legislature are simultaneously collecting a pension and a salary for being lawmakers That's right. According to the state comptroller, each of the long-tenured lawmakers temporarily "resigned'' from the Legislature at some point over the past few years to be eligible to collect a pension - and then immediately resumed their old duties so they could continue to collect a salary. This is what is known as "double-dipping'' and seems particularly unconscionable when there isn't even enough money to keep parks open full time.
And it IS the same state where, as I mentioned last week, the Legislature was set to approve a new $120,000-a-year job for the son of a senator before Andrew Cuomo blew the whistle.
After I wrote about a pleasant experience on the Barge Canal last Saturday, a state official wrote to me to warn that with budget woes and low usage, continued public access to the canals is no longer assured. Good thing I got to see it when I did.
All sounds pretty crazy to me. I don't think it's just because I'm not around the Capitol on a daily basis any more to witness this stuff. I think things really are whackier than ever. Can't wait to get back. Seems like I'm missing out on some pretty good column opportunities.
On a sunny, plus-90-degree day in August? What gives?
Turns out some state parks are closed for part of every week this season because of the state's fiscal problems.
And for those keeping score this IS the same state where newspapers reported today that four members of the Legislature are simultaneously collecting a pension and a salary for being lawmakers That's right. According to the state comptroller, each of the long-tenured lawmakers temporarily "resigned'' from the Legislature at some point over the past few years to be eligible to collect a pension - and then immediately resumed their old duties so they could continue to collect a salary. This is what is known as "double-dipping'' and seems particularly unconscionable when there isn't even enough money to keep parks open full time.
And it IS the same state where, as I mentioned last week, the Legislature was set to approve a new $120,000-a-year job for the son of a senator before Andrew Cuomo blew the whistle.
After I wrote about a pleasant experience on the Barge Canal last Saturday, a state official wrote to me to warn that with budget woes and low usage, continued public access to the canals is no longer assured. Good thing I got to see it when I did.
All sounds pretty crazy to me. I don't think it's just because I'm not around the Capitol on a daily basis any more to witness this stuff. I think things really are whackier than ever. Can't wait to get back. Seems like I'm missing out on some pretty good column opportunities.
Monday, August 17, 2009
Change the only option
Saturday was the 25th anniversary of us moving into our current abode, and we recently finished a major renovation.
The symbolism is obvious: we had nearly a quarter-century of what in retrospect especially appears to be a stable, idyllic existence. We raised our children, established our careers, made friends and began to grow old together while living in this house.
Then the day I had to leave work in June because of cancer symptoms was also the date workmen started to dismantle the kitchen.
Things of course don't stay the same forever, either in life or in the house. Both will eventually deteriorate and in some cases will require some major work.
The house workmen, a diligent crew, pushed through a weekend at the urging of some of our friends, and were mostly finished by the time I returned home from Boston on July 2 following the cancer surgery, which was performed by a different kind of craftsman.
So our house has a new and improved kitchen, dining room and family room, while I have a newly rerouted digestive tract.
We know that the changes to our house are improvements and that my internal alterations give me a better chance to survive the cancer.
I would have preferred no changes at all - I thought the old kitchen with the old cabinets and the old countertops and old shallow sink was fine - but change, it seems, is inevitable.
Now if it were only as easy to cure cancer as it is to put in a new floor...
The symbolism is obvious: we had nearly a quarter-century of what in retrospect especially appears to be a stable, idyllic existence. We raised our children, established our careers, made friends and began to grow old together while living in this house.
Then the day I had to leave work in June because of cancer symptoms was also the date workmen started to dismantle the kitchen.
Things of course don't stay the same forever, either in life or in the house. Both will eventually deteriorate and in some cases will require some major work.
The house workmen, a diligent crew, pushed through a weekend at the urging of some of our friends, and were mostly finished by the time I returned home from Boston on July 2 following the cancer surgery, which was performed by a different kind of craftsman.
So our house has a new and improved kitchen, dining room and family room, while I have a newly rerouted digestive tract.
We know that the changes to our house are improvements and that my internal alterations give me a better chance to survive the cancer.
I would have preferred no changes at all - I thought the old kitchen with the old cabinets and the old countertops and old shallow sink was fine - but change, it seems, is inevitable.
Now if it were only as easy to cure cancer as it is to put in a new floor...
Saturday, August 15, 2009
Low bridge, everybody down
I'm in the middle of a book about how the Erie Canal was built (DeWitt Clinton was a terrific governor seems to be part of the answer) and thought it would be fun to take a ride through a lock.
So Ellen, Allyson and I drove about 20 miles to Waterford (where my great-grandfather once worked in a textile mill) today to take a boat ride at the beginning of a canal that was mostly into a lock, up 33 feet, out of the lock and then back down again. A bit pricey at $10 a head for less than an hour on the water, but still fun.
I have thought it would be neat to rent a canal boat and head west for a few days, seeing the back side of cities and a lot of nice scenery, stopping in quaint villages and maybe biking around. But this may be as close as we come to that for a while.
The locks represent essentially the same technology that the original canal builders used 185 years ago. To go higher, a boat drives through an open gate into the lock, with the far gate closed holding back the higher stream. The doors close behind the boat. Water is piped in from above. Water and the boat rise. At the top, the far gate is opened and you're on your way. To drop, reverse the process.
It's a bit too glib to say that's the last good thing state government has done, since the Thruway worked out pretty well too. But I remember when Eliot Spitzer was running for gov, he cited those two projects, plus the creation of SUNY, to justify his optimism that the state could improve the lives of its citizens. We know how that turned out.
Anyway, exploring the canal seemed like a good low-key way to spend a 90-degree day when I expected chemo to sap my strength (milder than expected so far). Here are some pix Ellen took on the boat.
Here are pics showing our rise through the lock:
Ellen & Allyson mugging in the lock
Jay looking confused & relaxed
On our way out of the lock.Friday, August 14, 2009
Chemo part deux
I got stuck in the Yankee pod at chemo today, but the natives were surprisingly friendly.
Last week for my first chemo treatment I happened to land with a nurse who was the facility's most outspoken Red Sox fan. But she was off today. This week's nurse, Amy, acknowledged she was a Yankees fan but unlike one of her colleagues, she's not a fanatic and said she would take
good care of me even after seeing my Fenway Park shirt. She did.
Take away the differing baseball allegiences, the experience was much the same as last week: lounging in a comfortable chair as a cancer-fighting drug and other medications dripped into a vein in my arm for about an hour, giving me only a slight burning sensation.
The medication mix was altered slightly in an attempt to improve my sleeping. I'll also ease up on exercise tomorrow to lessen the muscle soreness I expect based on what happened last week.
The main change in the medication mix was to cut the amount of steroids, which fight nausea but can also make sleep difficult, in half.
We met with our doc first, and I asked him about today's lead story in the Times about a new cancer-fighting advance that might to a way to kill cancer stem cells.
He hadn't seen the story, but glanced at it briefly when I brought it to his attention and said although it could be promising, anything for patients to come out of this research is probably years away.
I of course look at "medical-breakthrough'' stories differently than I used to. But I know enough about the news biz to realize that there are probably many potential pitfalls before the advance reported by the Times influences many people's lives. In other words, I'm not counting on it to help me.
Here's the rest of the schedule as we now it: same treatment next Friday then a week off; three more weeks of Friday treatments. Hope the Sox fare better in that period of time than they did between the first and second treatments.
No one mentioned the recent Sox sweep by the Yanks, which made my day better.
Last week for my first chemo treatment I happened to land with a nurse who was the facility's most outspoken Red Sox fan. But she was off today. This week's nurse, Amy, acknowledged she was a Yankees fan but unlike one of her colleagues, she's not a fanatic and said she would take
good care of me even after seeing my Fenway Park shirt. She did.
Take away the differing baseball allegiences, the experience was much the same as last week: lounging in a comfortable chair as a cancer-fighting drug and other medications dripped into a vein in my arm for about an hour, giving me only a slight burning sensation.
The medication mix was altered slightly in an attempt to improve my sleeping. I'll also ease up on exercise tomorrow to lessen the muscle soreness I expect based on what happened last week.
The main change in the medication mix was to cut the amount of steroids, which fight nausea but can also make sleep difficult, in half.
We met with our doc first, and I asked him about today's lead story in the Times about a new cancer-fighting advance that might to a way to kill cancer stem cells.
He hadn't seen the story, but glanced at it briefly when I brought it to his attention and said although it could be promising, anything for patients to come out of this research is probably years away.
I of course look at "medical-breakthrough'' stories differently than I used to. But I know enough about the news biz to realize that there are probably many potential pitfalls before the advance reported by the Times influences many people's lives. In other words, I'm not counting on it to help me.
Here's the rest of the schedule as we now it: same treatment next Friday then a week off; three more weeks of Friday treatments. Hope the Sox fare better in that period of time than they did between the first and second treatments.
No one mentioned the recent Sox sweep by the Yanks, which made my day better.
Thursday, August 13, 2009
Time for a break
Emily is getting her first break from cancer duty in more than two months this weekend. She is going canoe camping in the Adirondacks with a friend, as they do annually and had planned for this time months in advance. The timing is good.
I'm getting a little nostalgic watching her pack, intending to take at least twice as much stuff as she'll ever need and taking almost as long to decide and arrange what to bring with her as she will actually be in the woods. Guess the packing is part of the fun. Some things never change, and some things I will never understand.
I have always been a guy who liked walking in the woods, but also thought a hot shower and soft bed were part of my birthright, so I've never been tempted to go on these trips. I'm in the middle of Bill Bryson's book about walking the Appalachian Trail, "A Walk in the Woods,'' and his experiences reinforced that notion.
Janice is also away, tending to her own responsibilities and the rest of her life in Ithaca after spending most of the time here since I was diagnosed in June. Ellen is the one who gets to put up with me, (with Allyson's help, of course) here for the weekend, coming in from the Boston area. Escorting me to an oncology appointment and chemo tomorrow is sure to be a highlight.
It's not easy for a cancer patient, at least this cancer patient, to be as appreciative enough of those who take care of me and to consider their needs since I'm overwhelmed with my own situation. I'm beyond fortunate to have this quartet to help me maneuver through this situation I'm in.
And I'm also lucky that Emily, especially, on whom the biggest burden has fallen, knows when she needs a break. We still have a long way to go.
I'm getting a little nostalgic watching her pack, intending to take at least twice as much stuff as she'll ever need and taking almost as long to decide and arrange what to bring with her as she will actually be in the woods. Guess the packing is part of the fun. Some things never change, and some things I will never understand.
I have always been a guy who liked walking in the woods, but also thought a hot shower and soft bed were part of my birthright, so I've never been tempted to go on these trips. I'm in the middle of Bill Bryson's book about walking the Appalachian Trail, "A Walk in the Woods,'' and his experiences reinforced that notion.
Janice is also away, tending to her own responsibilities and the rest of her life in Ithaca after spending most of the time here since I was diagnosed in June. Ellen is the one who gets to put up with me, (with Allyson's help, of course) here for the weekend, coming in from the Boston area. Escorting me to an oncology appointment and chemo tomorrow is sure to be a highlight.
It's not easy for a cancer patient, at least this cancer patient, to be as appreciative enough of those who take care of me and to consider their needs since I'm overwhelmed with my own situation. I'm beyond fortunate to have this quartet to help me maneuver through this situation I'm in.
And I'm also lucky that Emily, especially, on whom the biggest burden has fallen, knows when she needs a break. We still have a long way to go.
Wednesday, August 12, 2009
Are these the bums we need to vote out?
Like most New Yorkers who pay attention to these things, I was a wee bit skeptical today when I read that Sen. Pedro Espada of the Bronx insisted there was no connection between his sudden re-defection to the Democrats earlier this summer and the hiring of his son to a newly created $120,000-a-year legislative job.
A friend said today he planned to vote against all incumbents until further notice, just to show his frustration at the on-going shenanigans at the Capitol.
For the uninitiated, this is the latest twist in the sad tale of the this year's New York State Senate. Espada and some cohorts have seemed to use the closeness of the partisan divide (32 Dems, 30 Repubs) to enhance their personal power and, in this case, a family bank account, by swinging back and forth between the parties. If the job for this son, created in the midst of a hiring freeze and a fiscal crisis, was not a bribe, it was the next thing to it. His side of the margain was to return to the Democratic fold, after briefly being the leader of the Republicans.
Voting against all incumbents to developments like this is not at all an irrational response, I told my friend.
But then in the mail today, a got well-wishes from a couple of legislators I have known for a long time. It would be exaggerating to say I have gotten a flood of messages from lawmakers and other officials at the Capitol since my diagnosis, but there have been many more than I would have expected, and many from officials I wouldn't have guessed would be so considerate.
Thus another example of the constant conundrum of American politics and government, where most people think little of their legislative bodies, but for the most part like legislators as individuals and keep re-electing them. There's something about the definition of insanity that comes to mind here.
I don't have a pat solution to propose to this. One reason I have found politics to be fun to cover is many of the people involved are interesting and fun. But they have the same failings and weaknesses as the rest of us - in fact, often writ large because they frequently have outsized pesonalities and egos.
I'm sure there are even some people who admire Espada, maybe for the way he has managed to play the system. But there is every reason for citizens to be frustated and every reason to hold them accountable in the next election, regardless of how nice they are.
(How's that for a no-holds-barred opinion? At least I didn't use the dreaded phrase, "'on the other hand.")
A friend said today he planned to vote against all incumbents until further notice, just to show his frustration at the on-going shenanigans at the Capitol.
For the uninitiated, this is the latest twist in the sad tale of the this year's New York State Senate. Espada and some cohorts have seemed to use the closeness of the partisan divide (32 Dems, 30 Repubs) to enhance their personal power and, in this case, a family bank account, by swinging back and forth between the parties. If the job for this son, created in the midst of a hiring freeze and a fiscal crisis, was not a bribe, it was the next thing to it. His side of the margain was to return to the Democratic fold, after briefly being the leader of the Republicans.
Voting against all incumbents to developments like this is not at all an irrational response, I told my friend.
But then in the mail today, a got well-wishes from a couple of legislators I have known for a long time. It would be exaggerating to say I have gotten a flood of messages from lawmakers and other officials at the Capitol since my diagnosis, but there have been many more than I would have expected, and many from officials I wouldn't have guessed would be so considerate.
Thus another example of the constant conundrum of American politics and government, where most people think little of their legislative bodies, but for the most part like legislators as individuals and keep re-electing them. There's something about the definition of insanity that comes to mind here.
I don't have a pat solution to propose to this. One reason I have found politics to be fun to cover is many of the people involved are interesting and fun. But they have the same failings and weaknesses as the rest of us - in fact, often writ large because they frequently have outsized pesonalities and egos.
I'm sure there are even some people who admire Espada, maybe for the way he has managed to play the system. But there is every reason for citizens to be frustated and every reason to hold them accountable in the next election, regardless of how nice they are.
(How's that for a no-holds-barred opinion? At least I didn't use the dreaded phrase, "'on the other hand.")
Tuesday, August 11, 2009
New favorite day of the week
Tuesdays don't get enough respect (I refuse to quote the ungrammatical Rodney Dangerfield).
Tuesdays are too distant to use for long weekends, there is no Tuesday night football, they aren't hump days and they don't even have a relationship with Fridays. I love 'em anyway.
My newfound affection comes from its distance from chemo day. I feel as good now as I did before getting the chemo last Friday, and am not that close to the next chemo day. The way to think of it is the chemo did a real number on my cancer cells while everything else bounced back. The aches and pains are gone and the tiredness has subsided to pre-chemo levels.
Plus the sun is shining and the birds are singing, although I realize Tuesdays have no monopoly on that activity. Have to give a special nod for Tuesdays in August.
My Dad for years had Tuesdays off - he had to work Saturdays back in the days when there were Saturday afternoon newspapers. He always Tuesdays were always good days to do errands and get things done, but he didn't like his weekends getting chopped in half.
This Tuesday was also good because it was the first time in a week I didn't get depressed opening the paper to see a story about another Red Sox loss.
I don't want to get carried away here. Any day when I open my eyes, get out of bed, hug my family and otherwise experience the world is a good day.
Tuesdays are too distant to use for long weekends, there is no Tuesday night football, they aren't hump days and they don't even have a relationship with Fridays. I love 'em anyway.
My newfound affection comes from its distance from chemo day. I feel as good now as I did before getting the chemo last Friday, and am not that close to the next chemo day. The way to think of it is the chemo did a real number on my cancer cells while everything else bounced back. The aches and pains are gone and the tiredness has subsided to pre-chemo levels.
Plus the sun is shining and the birds are singing, although I realize Tuesdays have no monopoly on that activity. Have to give a special nod for Tuesdays in August.
My Dad for years had Tuesdays off - he had to work Saturdays back in the days when there were Saturday afternoon newspapers. He always Tuesdays were always good days to do errands and get things done, but he didn't like his weekends getting chopped in half.
This Tuesday was also good because it was the first time in a week I didn't get depressed opening the paper to see a story about another Red Sox loss.
I don't want to get carried away here. Any day when I open my eyes, get out of bed, hug my family and otherwise experience the world is a good day.
Sunday, August 9, 2009
Chemo's Kick
I owe a big apology to chemotherapy in general, and gemcitabine in particular, for doubting the effect they would have on me. Gemcitabine, which has a reputation for being well-tolerated by many cancer patients, can still pack a whallop.
After feeling pretty good for about 24 hours, I found myself laid low by the cancer-fighting drugs I had taken early Friday afternoon.
I made the pretty major mistake of thinking a little muscle soreness could be "worked out" by a reasonably vigorous bike ride on Saturday morning. Wrong. Apparently, I broke down some muscles climbing hills that normally repair themselves very quickly. Chemo, which attacks all fast-dividing cells, apparently including the cells needed to rebuild muscles, interfered with this process.
12 hours after my bike ride my thighs each felt like they weighed 100 pounds, and I have only begun to feel normal in the last few hours. I wasn't exactly the life of a party we attended Saturday afternoon, but did manage to down a big piece of delicious birthday cake. The muscle pain was accompanied by an overwhelming sense of weariness as well. Apart from muscle fatigue and soreness, however, I felt ok, and had none of the nausea that often afflicts cancer patients. If this is the price to pay for destroying cancer cells, so be it. I'll be better prepared for its effects next week.
After feeling pretty good for about 24 hours, I found myself laid low by the cancer-fighting drugs I had taken early Friday afternoon.
I made the pretty major mistake of thinking a little muscle soreness could be "worked out" by a reasonably vigorous bike ride on Saturday morning. Wrong. Apparently, I broke down some muscles climbing hills that normally repair themselves very quickly. Chemo, which attacks all fast-dividing cells, apparently including the cells needed to rebuild muscles, interfered with this process.
12 hours after my bike ride my thighs each felt like they weighed 100 pounds, and I have only begun to feel normal in the last few hours. I wasn't exactly the life of a party we attended Saturday afternoon, but did manage to down a big piece of delicious birthday cake. The muscle pain was accompanied by an overwhelming sense of weariness as well. Apart from muscle fatigue and soreness, however, I felt ok, and had none of the nausea that often afflicts cancer patients. If this is the price to pay for destroying cancer cells, so be it. I'll be better prepared for its effects next week.
Saturday, August 8, 2009
Football is not for old, sick guys
Janice and I hied ourselves (apologies to Gazette columnist Carl Strock) over to the Giants football training camp at SUNY Albany yesterday. One thing I could tell immediately was that none of the players had ever had surgery for pancreatic cancer or any other major abdominal woes.
They kept crashing into other - often shoulder into gut, and I winced almost every time. I know it's hard to not feel indestructable when you're in your early 20s but believe me, guys, it will probably happen eventually. Every few years papers will run stories about former star players (especially running backs, )who can barely walk or lift their shoulders or who have some other kinds of major health issues by the time they are 40.
The NFL doesn't seem that greatly concerned, since they have an endless flow of new cannon fodder coming out of (and occasionally actually graduating from) colleges every year.
My greatest physical challenge yesterday was not being inadvertently stuck in the gut with a stray elbow or purse as we made our way through the thick crowd. Half the time I was covering up like a boxer who doesn't want to take any more body blows.
My only other experience with a training camp was in Rochester a few years ago when we went to see the Bills work out at East Roch High School. I remember having a nice seat in the bleachers with all of the various drills easily visible. There might have been a few hundred people watching.
But this Giants thing is something else. People were packed several deep against a fence that was still 50 yards or so away from the players, who were just doing boring drills anyway. I was hoping to get close enough to get a sense of their size and how hard they hit, but we were far too remote for that.
The paper today said there were more than 6,000 people there yesterday, who paid $5 per car to park. It was autograph day, so people were lining a few deep hours ahead of time along the pathways the players took between the locker room and the fields. Didn't sound like our idea of fun. Besides, I hate the Giants for beating the Patriots in the Super Bowl two years ago.
There's an old saying that while baseball is better experienced live, football is better on TV. I would add to that that baseball spring training is fun since they play actual games, while football preseason can be safely avoided. Seems like it is such a dangerous game they can't afford to actually do too much of it in practice.
And if I do go to watch practice again, I will wear some version of a gut protector. Some of the fans looked like the the types to give their neighbor a friendly shot in the chops. Afraid I'm beyond that.
They kept crashing into other - often shoulder into gut, and I winced almost every time. I know it's hard to not feel indestructable when you're in your early 20s but believe me, guys, it will probably happen eventually. Every few years papers will run stories about former star players (especially running backs, )who can barely walk or lift their shoulders or who have some other kinds of major health issues by the time they are 40.
The NFL doesn't seem that greatly concerned, since they have an endless flow of new cannon fodder coming out of (and occasionally actually graduating from) colleges every year.
My greatest physical challenge yesterday was not being inadvertently stuck in the gut with a stray elbow or purse as we made our way through the thick crowd. Half the time I was covering up like a boxer who doesn't want to take any more body blows.
My only other experience with a training camp was in Rochester a few years ago when we went to see the Bills work out at East Roch High School. I remember having a nice seat in the bleachers with all of the various drills easily visible. There might have been a few hundred people watching.
But this Giants thing is something else. People were packed several deep against a fence that was still 50 yards or so away from the players, who were just doing boring drills anyway. I was hoping to get close enough to get a sense of their size and how hard they hit, but we were far too remote for that.
The paper today said there were more than 6,000 people there yesterday, who paid $5 per car to park. It was autograph day, so people were lining a few deep hours ahead of time along the pathways the players took between the locker room and the fields. Didn't sound like our idea of fun. Besides, I hate the Giants for beating the Patriots in the Super Bowl two years ago.
There's an old saying that while baseball is better experienced live, football is better on TV. I would add to that that baseball spring training is fun since they play actual games, while football preseason can be safely avoided. Seems like it is such a dangerous game they can't afford to actually do too much of it in practice.
And if I do go to watch practice again, I will wear some version of a gut protector. Some of the fans looked like the the types to give their neighbor a friendly shot in the chops. Afraid I'm beyond that.
Friday, August 7, 2009
The joys of chemo
Who wouldn't look for omens on the first day of chemo?
One of the first things my nurse, Judy, said as she prepared me for my initial "infusion'' of the cancer-fighting chemical today is that she had taken some grief earlier in the day for the Yankees' trashing of the Sox last night.
Turns out she is a Mass. native and an ardent and well informed (we agreed it's past time to dump John Schmoltz) Red Sox fan, with just the faintest hint of the Bay State left in her voice. Judy made me feel at home.
Just as we were leaving, a large number of staff members wheeled in a cake and sang "happy birthday" to a woman in a nearby chair. Seems like many of the patients have been getting chemo in this large open room with lounge-like chairs for years, and know each other and the staff well.
I wouldn't decribe the atmostphere in the room with maybe 25 patients as festive exactly, but not grim like the waiting rooms of oncologists we've visited. Relaxed is more like it. Patients were reading, watching TV, doing e-mails and chatting, some looking slightly bored, but not uncomfortable or scared.
The process was painless and relatively fast. I may well have some side effects, but they haven't kicked in yet (I'm writing this just a couple of hours after the end of the treatment.) I'm due back in the same place for the same treatment next Friday and the week after.
Maybe the best thing I heard Judy say today was that for many people in the room cancer has become a "chronic'' disease.
She was trying I think to warn me not to expect a cure, at least not any time soon. But that's not how I took it. At this stage I'll take a chronic anything, even a disease.
One of the first things my nurse, Judy, said as she prepared me for my initial "infusion'' of the cancer-fighting chemical today is that she had taken some grief earlier in the day for the Yankees' trashing of the Sox last night.
Turns out she is a Mass. native and an ardent and well informed (we agreed it's past time to dump John Schmoltz) Red Sox fan, with just the faintest hint of the Bay State left in her voice. Judy made me feel at home.
Just as we were leaving, a large number of staff members wheeled in a cake and sang "happy birthday" to a woman in a nearby chair. Seems like many of the patients have been getting chemo in this large open room with lounge-like chairs for years, and know each other and the staff well.
I wouldn't decribe the atmostphere in the room with maybe 25 patients as festive exactly, but not grim like the waiting rooms of oncologists we've visited. Relaxed is more like it. Patients were reading, watching TV, doing e-mails and chatting, some looking slightly bored, but not uncomfortable or scared.
The process was painless and relatively fast. I may well have some side effects, but they haven't kicked in yet (I'm writing this just a couple of hours after the end of the treatment.) I'm due back in the same place for the same treatment next Friday and the week after.
Maybe the best thing I heard Judy say today was that for many people in the room cancer has become a "chronic'' disease.
She was trying I think to warn me not to expect a cure, at least not any time soon. But that's not how I took it. At this stage I'll take a chronic anything, even a disease.
Thursday, August 6, 2009
Three little words...
"How are you?" is a phrase that doesn't mean what it used to.
The trouble is that "fine'' no longer suffices for a response, but the bank teller or the supermarket clerk who greets me with that phrase doesn't want to hear my troubles. Grunting seems to be an acceptable response from me. It sometimes brings a knowing, is somewhat puzzled, nod.
The trouble is it's often hard to decipher whether the question is merely a conventional conversation-starter or a real inquiry. Sometimes emphasizing the second word instead of the third is a tipoff.
I thought a friend got it right today when she called and said, "I'm not even going to ask you how you are. But how are you feeling today?"
Not bad, I truthfully responded, without the gory details that she knew I didn't want to get into. But I could have if I had wanted to.
Right after I was diagnosed, I more than once broke down when friends I happened to run into asked me the question, and the truth poured out of me. I suppose that's why the custom developed - to give people a chance to open up when they feel the need. Oh yeah. Almost forgot. Sometimes people have good news they're just bursting to share.
From my side, I try to make sure to ask the question of everyone I talk to that I care about, with more sincerity than I used to. It's led to some interesting conversations. While most people who have their own problems - and that in my experience is almost everybody - say they don't want to burden me, I find that lending a sympathetic ear feels good, and I hope is of some help. I also don't ask it any more of people I'm just interacting with casually. It has become too loaded a question.
In the words of an old Christine Lavin folk song, I may not yet be a "sensitive new age guy,'' but I'm also not going to get much closer than I am now.
The trouble is that "fine'' no longer suffices for a response, but the bank teller or the supermarket clerk who greets me with that phrase doesn't want to hear my troubles. Grunting seems to be an acceptable response from me. It sometimes brings a knowing, is somewhat puzzled, nod.
The trouble is it's often hard to decipher whether the question is merely a conventional conversation-starter or a real inquiry. Sometimes emphasizing the second word instead of the third is a tipoff.
I thought a friend got it right today when she called and said, "I'm not even going to ask you how you are. But how are you feeling today?"
Not bad, I truthfully responded, without the gory details that she knew I didn't want to get into. But I could have if I had wanted to.
Right after I was diagnosed, I more than once broke down when friends I happened to run into asked me the question, and the truth poured out of me. I suppose that's why the custom developed - to give people a chance to open up when they feel the need. Oh yeah. Almost forgot. Sometimes people have good news they're just bursting to share.
From my side, I try to make sure to ask the question of everyone I talk to that I care about, with more sincerity than I used to. It's led to some interesting conversations. While most people who have their own problems - and that in my experience is almost everybody - say they don't want to burden me, I find that lending a sympathetic ear feels good, and I hope is of some help. I also don't ask it any more of people I'm just interacting with casually. It has become too loaded a question.
In the words of an old Christine Lavin folk song, I may not yet be a "sensitive new age guy,'' but I'm also not going to get much closer than I am now.
Wednesday, August 5, 2009
More than a victim
When I mentioned to Emily yesterday that I was feeling a little stronger, she asked me if that meant I could resume some of my daily chores, like doing the grilling and setting the table.
At first I was a bit taken aback, since I was thinking more along the lines of maybe playing golf a little ahead of the deadline or extending my bke trips.
But upon further reflection, which I have more time to do now than I used to, I realize that besides wanting to get rid of a little of the extra load she has been carrying, she was also challenging me to be more of a regular person again.
And what would be better than that?
So I'm a again the table-setter, and plan to be the grille chef sometime soon. Not sure how soon I want to be the dishwasher-emptier, table cleaner and trash collector, much less lawn mower, raker and edger. It's amazing to me that people can do all of those things and earn a living too. And I hear in their spare time some of them raise children.
It's too easy sometimes for someone in my position to lose touch with life, and I'm glad I've been nudged in the right direction. No one who can possibly avoid it wants to be a full-time victim.
At first I was a bit taken aback, since I was thinking more along the lines of maybe playing golf a little ahead of the deadline or extending my bke trips.
But upon further reflection, which I have more time to do now than I used to, I realize that besides wanting to get rid of a little of the extra load she has been carrying, she was also challenging me to be more of a regular person again.
And what would be better than that?
So I'm a again the table-setter, and plan to be the grille chef sometime soon. Not sure how soon I want to be the dishwasher-emptier, table cleaner and trash collector, much less lawn mower, raker and edger. It's amazing to me that people can do all of those things and earn a living too. And I hear in their spare time some of them raise children.
It's too easy sometimes for someone in my position to lose touch with life, and I'm glad I've been nudged in the right direction. No one who can possibly avoid it wants to be a full-time victim.
Tuesday, August 4, 2009
The world looks good from a bicycle seat
When I was in school I remember piloting my one-speed, balloon tire Schwinn bicycle with twin rear-view mirrors, an electric horn and wire saddlebag-style rear baskets to school, on my paper route and around town. It must have weighed close to what I did.
Like most of my peers, I eventually decided bikes were dorky, until I didn't care about that any more and discovered the miracle of multiple gears.
Although the style of bike has changed, I still like the way the world looks from a bicycle seat.
Just eight days ago, the surgeon gave me clearance to ride a bike again, since no "torquing'' my abs is involved. I've done that just about every day that it hasn't rained on my 24-speed Trek hybrid (how did anyone ever ride a one-speed?). Although the "trips'' I have taken would not qualify as a workout any more, poking around the flatlands of Delmar and Slingerlands in low gears for an hour or so daily has been been a real treat.
I try to remind myself that while a really ambitious ride or actually anything hilly is still out of the question, I am so fortunate to move my body, feel the bike respond, and glide around this idyllic part of the world, observing people doing things like tending to their lawns, picking up their mail and doing other activities that until a couple of months ago I thought of as mundane.
Not any more.
Like most of my peers, I eventually decided bikes were dorky, until I didn't care about that any more and discovered the miracle of multiple gears.
Although the style of bike has changed, I still like the way the world looks from a bicycle seat.
Just eight days ago, the surgeon gave me clearance to ride a bike again, since no "torquing'' my abs is involved. I've done that just about every day that it hasn't rained on my 24-speed Trek hybrid (how did anyone ever ride a one-speed?). Although the "trips'' I have taken would not qualify as a workout any more, poking around the flatlands of Delmar and Slingerlands in low gears for an hour or so daily has been been a real treat.
I try to remind myself that while a really ambitious ride or actually anything hilly is still out of the question, I am so fortunate to move my body, feel the bike respond, and glide around this idyllic part of the world, observing people doing things like tending to their lawns, picking up their mail and doing other activities that until a couple of months ago I thought of as mundane.
Not any more.
Monday, August 3, 2009
High-stakes politics
Different stories now pique my interest when I scan the front page of newspaper. Take today's New York Times, for instance.
While only a couple of months ago the story about Andrew Cuomo considering a run for governor would have been the first thing I read ( when I did read it today, I was disappointed but not surprised that there was nothing new in it) today it slipped down a notch.
The story that captured my attention concerned a how lack of volunteers is hindering the fight to find cures for cancer. Forty years after President Nixon delcared war on cancer, the story said, the disease still has the upper hand.
According to The Times, only about 3 percent of adult cancer patients participate in studies. And as one of the docs quoted in the story said, it's hard to improve treatment when you can't find enough subjects to compare existing therapies to new ones.
On the other hand, as we used to say in the news biz, who wants to be in the placebo category?
If I am fortunate, I will participate this fall in a "cyberknife'' radiation-treatment program at Beth Israel Hospital in Boston. It's a promising, but unproven, form of therapy. There have been no studies yet of people with comparable symptoms, some of whom get the therapy and some who don't, and who fared better.
And, ahem, I would not be among those raising my hand of I were asked to be in a control group of someone with my symptoms who doesn't get the treatment.
Thus the conundrum.
Turns out the trials and other testing is expensive for doctors and hospitals, which is a further disincentive to launch them.
There is also a tension, one doctor told us, between the desire of some to advance the cause of finding cures from what is best for a particular patient.
I thought when I was working I witnessed a lot of high-stakes politics. But it now looks like the stakes were trivial compared to what's going on in health care.
While only a couple of months ago the story about Andrew Cuomo considering a run for governor would have been the first thing I read ( when I did read it today, I was disappointed but not surprised that there was nothing new in it) today it slipped down a notch.
The story that captured my attention concerned a how lack of volunteers is hindering the fight to find cures for cancer. Forty years after President Nixon delcared war on cancer, the story said, the disease still has the upper hand.
According to The Times, only about 3 percent of adult cancer patients participate in studies. And as one of the docs quoted in the story said, it's hard to improve treatment when you can't find enough subjects to compare existing therapies to new ones.
On the other hand, as we used to say in the news biz, who wants to be in the placebo category?
If I am fortunate, I will participate this fall in a "cyberknife'' radiation-treatment program at Beth Israel Hospital in Boston. It's a promising, but unproven, form of therapy. There have been no studies yet of people with comparable symptoms, some of whom get the therapy and some who don't, and who fared better.
And, ahem, I would not be among those raising my hand of I were asked to be in a control group of someone with my symptoms who doesn't get the treatment.
Thus the conundrum.
Turns out the trials and other testing is expensive for doctors and hospitals, which is a further disincentive to launch them.
There is also a tension, one doctor told us, between the desire of some to advance the cause of finding cures from what is best for a particular patient.
I thought when I was working I witnessed a lot of high-stakes politics. But it now looks like the stakes were trivial compared to what's going on in health care.
Sunday, August 2, 2009
Taking a pass on Baltimore
Big news out of Baltimore today: The Red Sox completed a four-game sweep of the Orioles and the Gallaghers have decided to delay their visit to Johns Hopkins.
The Sox left the town sometimes know as Charm City today following an 18-10 blowout and headed to Tampa to play the Devil Rays, while the Gallaghers, who were scheduled to head out to Edgar Allen Poe's home town tomorrow in preparation for a series of tests and meetings with docs Tuesday, decided to stay home instead.
With chemo already scheduled to start Friday in Albany and almost no chance of hearing of a superior strategy that would change that plan, we decided that the effort wasn't worth it. We could reschedule there, one of top cancer-fighting cancers in the nation, later as needed. The people who run their cancer center have been gracious and accommodating in their dealings with Janice.
There is a rumor that the sun may make an appearance Tuesday, and soaking it in would have more immediate therapeutic value than more tests and talks.
Now if the Sox series with the Orioles had been a few days later...
The Sox left the town sometimes know as Charm City today following an 18-10 blowout and headed to Tampa to play the Devil Rays, while the Gallaghers, who were scheduled to head out to Edgar Allen Poe's home town tomorrow in preparation for a series of tests and meetings with docs Tuesday, decided to stay home instead.
With chemo already scheduled to start Friday in Albany and almost no chance of hearing of a superior strategy that would change that plan, we decided that the effort wasn't worth it. We could reschedule there, one of top cancer-fighting cancers in the nation, later as needed. The people who run their cancer center have been gracious and accommodating in their dealings with Janice.
There is a rumor that the sun may make an appearance Tuesday, and soaking it in would have more immediate therapeutic value than more tests and talks.
Now if the Sox series with the Orioles had been a few days later...
Saturday, August 1, 2009
TGIF (?)
Thursdays used to be the highlight of my week - the day I got to write my column. From now on, they key day is going to be Friday.
That's the day I will get chemo treatments at a doc's office in Albany, starting next Friday - six weeks and one day after my surgery. The plan is for me to get chemical called gemcitabine intravenously for about 90 minutes for the next three Fridays, then take a week off. Then repeat the cycle.
After that, I will go to Boston for another CT scan. If the cancer hasn't spread, I will be scheduled for the high-dose radiation treatment known as "cyberknife'' there about a month later to try to shrink the existing tumor. Then more chemo.
They tell me that gemcitabine is usually fairly well tolerated, which means that hopefully I will continue to actually feel better as the surgery wound continues to heal even as the chemo saps some of my energy. We'll see.
That's the day I will get chemo treatments at a doc's office in Albany, starting next Friday - six weeks and one day after my surgery. The plan is for me to get chemical called gemcitabine intravenously for about 90 minutes for the next three Fridays, then take a week off. Then repeat the cycle.
After that, I will go to Boston for another CT scan. If the cancer hasn't spread, I will be scheduled for the high-dose radiation treatment known as "cyberknife'' there about a month later to try to shrink the existing tumor. Then more chemo.
They tell me that gemcitabine is usually fairly well tolerated, which means that hopefully I will continue to actually feel better as the surgery wound continues to heal even as the chemo saps some of my energy. We'll see.
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