A correction from the last posting: Rich is now using "Bag Balm," not "Udder Balm." That's another, though similiar, product.
Go to the website, and the categories for use of Bag Balm are cows, horses, and pets. I'm not sure where Rich fits into this, although this morning he left me a note saying that his right "hoof" was somewhat painful. Last night he was snorting a bit, too.
But this tin of lanolin also heals those lacking hooves or paws; referring to testimonials from the website, it is a favorite lotion for those "on a long journey." It has, for example, accompanied explorers to the North Pole, protecting their skin from the ravages of bitter cold.
On this expedition, bag balm is doing a nice job of controlling "hand and foot syndrome" (maybe by transforming it into "paw and hoof syndrome"?) with Rich not having too much discomfort from blistering feet, one of Sutent's side effects. And, as a bonus, his skin now has the silky suppleness of a fine leather coat.
Thursday we trot off to New York. I'll be in touch.
Candace
Tuesday, August 28, 2007
Friday, August 24, 2007
a truckload of dung
Buddhist monk Ajahn Brahm is the author of a book of 108 stories titled, "Who Ordered this Truckload of Dung?" Haven't read the book, but love the title.
In the past few weeks, the loads have been coming steadily.
"Did you order this?" Rich asks, as the day ends with another fresh delivery.
"No, did you?" I ask.
But the good news is: The pile is getting smaller. Or -- we are getting bigger shovels and stronger backs.
Where we are: Day 9 of Rich's "Sutent" trial (or trail, equally descriptive). Thus far, the side effects are predictable. Mouth sores, mild headache, foot reddening/blistering. Baking soda rinses help with the mouth issues, and udder balm with the feet. (For urban readers: udder balm is exactly as it sounds. For cows. But works for human parts, too).
Next Thursday and Friday we return to NYC to check in at Sloan Kettering. Also next week, Rich has an MRI scan -- pending insurance authorization -- to check on the progress of the chordoma.
Rich is still going to work. We are still drinking wine at dinner. We are still shoveling.
A good weekend to all,
Candace
In the past few weeks, the loads have been coming steadily.
"Did you order this?" Rich asks, as the day ends with another fresh delivery.
"No, did you?" I ask.
But the good news is: The pile is getting smaller. Or -- we are getting bigger shovels and stronger backs.
Where we are: Day 9 of Rich's "Sutent" trial (or trail, equally descriptive). Thus far, the side effects are predictable. Mouth sores, mild headache, foot reddening/blistering. Baking soda rinses help with the mouth issues, and udder balm with the feet. (For urban readers: udder balm is exactly as it sounds. For cows. But works for human parts, too).
Next Thursday and Friday we return to NYC to check in at Sloan Kettering. Also next week, Rich has an MRI scan -- pending insurance authorization -- to check on the progress of the chordoma.
Rich is still going to work. We are still drinking wine at dinner. We are still shoveling.
A good weekend to all,
Candace
Wednesday, August 15, 2007
eulogy for compost
Our former house is almost sold; closing is on Friday. Today Rich and I went to the waste station and emptied remnants from the garage: old wet rugs, broken-down furniture, one of my graduation robes.
All that's left of us is a compost bin that never would pass inspection by today's standards. Now we can buy "earth machines" and fancy rotating drums and consult compost mavens, but when Rich built this primitive square bin in the early 1980s it was profoundly unscientific. Into it went food and garden scraps, topped occasionally by spring grass clippings and autumn leaves. A lot of it was eaten by acrobatic rodents. Some of it -- tablespoonfuls, not much more -- actually turned into soft, sweet-smelling, nutrient-rich compost. After twenty or so years, this wasn't much to brag about.
I hope my life -- our lives -- have yielded more, but I wonder. Random piles of actions and thoughts and fears, nibbled around the edges...if I paid more attention, maybe I could have been one the folks at the cooperative extension demonstrations, proudly standing next to a barrel full of fertile soil.
Or maybe not. Maybe feeding hungry rodents is the best I can do.
Candace
All that's left of us is a compost bin that never would pass inspection by today's standards. Now we can buy "earth machines" and fancy rotating drums and consult compost mavens, but when Rich built this primitive square bin in the early 1980s it was profoundly unscientific. Into it went food and garden scraps, topped occasionally by spring grass clippings and autumn leaves. A lot of it was eaten by acrobatic rodents. Some of it -- tablespoonfuls, not much more -- actually turned into soft, sweet-smelling, nutrient-rich compost. After twenty or so years, this wasn't much to brag about.
I hope my life -- our lives -- have yielded more, but I wonder. Random piles of actions and thoughts and fears, nibbled around the edges...if I paid more attention, maybe I could have been one the folks at the cooperative extension demonstrations, proudly standing next to a barrel full of fertile soil.
Or maybe not. Maybe feeding hungry rodents is the best I can do.
Candace
Saturday, August 11, 2007
secaucus is not our destination
Dear Friends,
Rich is now resting from our trip to New York City. I had the first sleep shift, just awaking from a two-hour nap.
This is what happened yesterday.
Weeping rain, all morning. Sometimes, very heavy. We board a morning train from Salisbury Mills to Penn Station, a 1 hour 20 minute trip. We watch the rain, hold hands, talk. We wish we had done more of this.
We call a friend, and take the subway to meet her uptown. A wonderful lunch that became our dinner, too. Plates of pasta and glasses of wine and, mostly, hope.
Two buses later, crosstown and downtown, the rain stopped, amazingly cool New York weather blowing in. We arrive at the Laurence Rockefeller Pavilion, the midtown satellite of Memorial Sloan Kettering. A lobby of the a $600-a-night hotel couldn't be finer. The concierge, wearing tie and a smile --- no pink-coated volunteer here --- greets us. Fifth floor, we're told.
We wait. Rich is weighed, measured, his temperature taken.
We wait.
We are escorted into the inner sanctum where the doctor whom we have never met will, we hope, offer us a bag of the experimental pills that will knock back Rich's growth.
We wait.
A young woman, friendly and enthusiastic, enters. She wants to tape the conversation Rich will have with the Fellow, the doctor's assistant. Okay, he says. He signs a form. He offers an office at Cornell that can help with her project. She is brimming gratitude.
We wait.
The Fellow arrives. About twenty minutes of questions Rich has answered countless times before. He is examined. How many fingers do you see? Are you in pain when I touch your back, neck, armpits, groin?
We wait.
Two hours after arriving, the doctor walks in. With a wad of forms, but no pills. Sign these, he says. You can read them later. Rich agrees to cooperate with this experiment, to keep a daily log, and to return to New York in a week to pick up the pills.
What? we both say.
Okay, okay, maybe we can work something out, the doctor agrees. You need blood tests before we begin. An EKG, too. Sutent can cause heart failure. Why didn't you tell me this before, Rich says. I could have done these test back home. Now we're losing time.
I hope this helps with your symptoms, the doctor says.
I don't want help with "symptoms," Rich says. I want help so I'm not paralyzed. I want help so I don't die.
Forever a scientist, Rich asks questions that can't be answered. He's a guinea pig --- actually, a ferret, they apparently are the only other animals that support chordomas --- and we leave with scrips for tests and daily logs and reminders to return every two weeks.
Everyone, even the doctor for whom Rich is the ferret, is nice.
But while nice is nice, I don't care about nice. I care about Rich dying.
We take the subway back to Penn Station. It's late. We ate, we realize, days ago. Because of his current meds, he gets shaky when he doesn't eat. We get sandwiches at Penn Station.
We wait.
The train comes. We change at Secaucus, the timetable says. But this is the first stop, and on the crowded train the conductor doesn't collect our tickets before we disembark.
We could have gone to Secaucus for free, I say.
No, Rich says. He grew up in the next town. He knows. Secaucus, he says, is no one's destination.
When we get on the train for the long part of the trip, the conductor takes our ticket. For the long trip, everyone pays.
Candace
Rich is now resting from our trip to New York City. I had the first sleep shift, just awaking from a two-hour nap.
This is what happened yesterday.
Weeping rain, all morning. Sometimes, very heavy. We board a morning train from Salisbury Mills to Penn Station, a 1 hour 20 minute trip. We watch the rain, hold hands, talk. We wish we had done more of this.
We call a friend, and take the subway to meet her uptown. A wonderful lunch that became our dinner, too. Plates of pasta and glasses of wine and, mostly, hope.
Two buses later, crosstown and downtown, the rain stopped, amazingly cool New York weather blowing in. We arrive at the Laurence Rockefeller Pavilion, the midtown satellite of Memorial Sloan Kettering. A lobby of the a $600-a-night hotel couldn't be finer. The concierge, wearing tie and a smile --- no pink-coated volunteer here --- greets us. Fifth floor, we're told.
We wait. Rich is weighed, measured, his temperature taken.
We wait.
We are escorted into the inner sanctum where the doctor whom we have never met will, we hope, offer us a bag of the experimental pills that will knock back Rich's growth.
We wait.
A young woman, friendly and enthusiastic, enters. She wants to tape the conversation Rich will have with the Fellow, the doctor's assistant. Okay, he says. He signs a form. He offers an office at Cornell that can help with her project. She is brimming gratitude.
We wait.
The Fellow arrives. About twenty minutes of questions Rich has answered countless times before. He is examined. How many fingers do you see? Are you in pain when I touch your back, neck, armpits, groin?
We wait.
Two hours after arriving, the doctor walks in. With a wad of forms, but no pills. Sign these, he says. You can read them later. Rich agrees to cooperate with this experiment, to keep a daily log, and to return to New York in a week to pick up the pills.
What? we both say.
Okay, okay, maybe we can work something out, the doctor agrees. You need blood tests before we begin. An EKG, too. Sutent can cause heart failure. Why didn't you tell me this before, Rich says. I could have done these test back home. Now we're losing time.
I hope this helps with your symptoms, the doctor says.
I don't want help with "symptoms," Rich says. I want help so I'm not paralyzed. I want help so I don't die.
Forever a scientist, Rich asks questions that can't be answered. He's a guinea pig --- actually, a ferret, they apparently are the only other animals that support chordomas --- and we leave with scrips for tests and daily logs and reminders to return every two weeks.
Everyone, even the doctor for whom Rich is the ferret, is nice.
But while nice is nice, I don't care about nice. I care about Rich dying.
We take the subway back to Penn Station. It's late. We ate, we realize, days ago. Because of his current meds, he gets shaky when he doesn't eat. We get sandwiches at Penn Station.
We wait.
The train comes. We change at Secaucus, the timetable says. But this is the first stop, and on the crowded train the conductor doesn't collect our tickets before we disembark.
We could have gone to Secaucus for free, I say.
No, Rich says. He grew up in the next town. He knows. Secaucus, he says, is no one's destination.
When we get on the train for the long part of the trip, the conductor takes our ticket. For the long trip, everyone pays.
Candace
Thursday, August 9, 2007
55 Miles North
Dear Friends,
In a couple of hours we will be leaving for New York. Not quite New York, but 55 miles north, where we will be staying at a bed and breakfast, and then taking a train into the city for Rich's appointment on Friday.
The proprietors of the B&B have a question on their reservation form. "Why are you visiting?" The choices: Business. Pleasure. Honeymoon. I leave this blank.
Rich is ready. He has his notes, he has done the research. He will be the third person to take "Sutent" for chordoma treatment. We don't know if it will reduce the tumor. We don't know how sick he will be from the drug. We don't know if and when surgery will happen. We don't know how fast the tumor will move.
"What will become of me?" Rich wondered last night. "What will become of you?"
To this, I have no answer. I want other options.
Candace
In a couple of hours we will be leaving for New York. Not quite New York, but 55 miles north, where we will be staying at a bed and breakfast, and then taking a train into the city for Rich's appointment on Friday.
The proprietors of the B&B have a question on their reservation form. "Why are you visiting?" The choices: Business. Pleasure. Honeymoon. I leave this blank.
Rich is ready. He has his notes, he has done the research. He will be the third person to take "Sutent" for chordoma treatment. We don't know if it will reduce the tumor. We don't know how sick he will be from the drug. We don't know if and when surgery will happen. We don't know how fast the tumor will move.
"What will become of me?" Rich wondered last night. "What will become of you?"
To this, I have no answer. I want other options.
Candace
Tuesday, August 7, 2007
collateral damage
Dear Friends,
Last night I didn't sleep much. Maybe it's the heat (we're in the Dog Days here). Maybe it's re-writing my book (I'm at the hump stage, where everything I've written in the past year seems absurd). Or, maybe, it's the effect of Rich's steroids which the 1,000 word manifesto accompanying the drug warns: "Can produce insomnia."
Rich slept fine.
"Collateral damage," he said this morning. That's not included with prescriptions. The interdependence of our lives can't be quantified. If my connection with my morning cup of "English Breakfast" tea binds me to strangers in East Africa and Sri Lanka and India -- what of the one breathing beside me?
Love,
Candace
Last night I didn't sleep much. Maybe it's the heat (we're in the Dog Days here). Maybe it's re-writing my book (I'm at the hump stage, where everything I've written in the past year seems absurd). Or, maybe, it's the effect of Rich's steroids which the 1,000 word manifesto accompanying the drug warns: "Can produce insomnia."
Rich slept fine.
"Collateral damage," he said this morning. That's not included with prescriptions. The interdependence of our lives can't be quantified. If my connection with my morning cup of "English Breakfast" tea binds me to strangers in East Africa and Sri Lanka and India -- what of the one breathing beside me?
Love,
Candace
Sunday, August 5, 2007
a new day
Dear Friends,
Rich is showing significant improvement since we returned two days ago from New York. Possible reasons: Steroids, acupuncture, and my cooking. Well, two out of three. The first two are designed to reduce swelling along the nerves affected by the chordoma, and already they seem to be having impressive impact. He has mowed the lawn, filled some cracks in the concrete walkway, and otherwise engaged in arm motions not possible a few days ago. While driving our stick shift cars, he cannot move his arm in the required direction to engage reverse gear -- but, hey, that's not the direction we plan on going.
Thanks to all for your e-mails and calls and hugs, virtual and in-person. You're our lifeline.
Love,
Candace
Rich is showing significant improvement since we returned two days ago from New York. Possible reasons: Steroids, acupuncture, and my cooking. Well, two out of three. The first two are designed to reduce swelling along the nerves affected by the chordoma, and already they seem to be having impressive impact. He has mowed the lawn, filled some cracks in the concrete walkway, and otherwise engaged in arm motions not possible a few days ago. While driving our stick shift cars, he cannot move his arm in the required direction to engage reverse gear -- but, hey, that's not the direction we plan on going.
Thanks to all for your e-mails and calls and hugs, virtual and in-person. You're our lifeline.
Love,
Candace
Saturday, August 4, 2007
a new home
Dear Friends,
We moved into our new home a bit over two months ago. Since then, we have been asked: "When's the housewarming?" In September, I thought. After our other home is sold, after we buy some furnishings and unpack here, after the weather cools off.
But Rich's chordoma --- a little thing, really --- has shifted our plans. Here's where we are.
The yearly scan in July at Mass General revealed a growth in the tumor in his cervical spine. Thus far, the effect is rapid weakening of his right arm, but very little pain. The lack of pain is bewildering to his surgeon at Sloan Kettering, and in this case "no pain" may not be a good thing. Further radiation is not an option now, as the tumor apparently is not sensitive to this form of attack. Surgery, while still possible, would almost certainly destroy use of his arm. And time is important, too, as the symptoms increase almost daily, and as the chordoma works its way into the spine itself.
So, at this moment, we planning to return to Sloan Kettering next Friday for Rich to begin a highly experimental chemotherapy drug, "Sutent," that is primarily used for advanced renal cancer. Using it for chordoma is a shot in the dark, but one that we hope will encourage the chordoma to gracefully fade away, and find a new home.
Candace
We moved into our new home a bit over two months ago. Since then, we have been asked: "When's the housewarming?" In September, I thought. After our other home is sold, after we buy some furnishings and unpack here, after the weather cools off.
But Rich's chordoma --- a little thing, really --- has shifted our plans. Here's where we are.
The yearly scan in July at Mass General revealed a growth in the tumor in his cervical spine. Thus far, the effect is rapid weakening of his right arm, but very little pain. The lack of pain is bewildering to his surgeon at Sloan Kettering, and in this case "no pain" may not be a good thing. Further radiation is not an option now, as the tumor apparently is not sensitive to this form of attack. Surgery, while still possible, would almost certainly destroy use of his arm. And time is important, too, as the symptoms increase almost daily, and as the chordoma works its way into the spine itself.
So, at this moment, we planning to return to Sloan Kettering next Friday for Rich to begin a highly experimental chemotherapy drug, "Sutent," that is primarily used for advanced renal cancer. Using it for chordoma is a shot in the dark, but one that we hope will encourage the chordoma to gracefully fade away, and find a new home.
Candace
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