Just to keep you informed, I had Taxol in my abdomen yesterday at the doctor's office. Overall it took about 4 hours, because they need to take blood from the IV port in my upper chest, wait for the results, then hook up my IP (intraperitoneal - that is, abdominal) port, run saline and a few anti-nausea meds through, then let the Taxol drip through for about 1 hour, followed by more flushing of the ports.
After the Benadryl went in, I feel asleep - so much for the reading I thought I was going to do. It didn't help that they had me lying flat in the Lazy Boy-type chairs they use in the chemo room. I sat up for the IV chemo I had last time in the office, but they recommended the extra-lazy position for the chemo administered abdominally.
I was directed to lie down for 2 hours at home, switching every 15 minutes between lying on my right side and my left side. I did the same maneuvers when I got the Cisplatin chemo abdominally in the hospital last week. Apparently they're taking advantage of gravity to make sure the chemo coming through the soaker hose-like catheter attached to the IP port gets widely distributed throughout my abdomen. It's very mechanical - unlike a lot of treatment, it's easy to picture what's going on.
In Eight Steps to Happiness Geshe-la says "'Self' and 'other' are relative terms, rather like 'this mountain' and 'that mountain ... 'This' and 'that' therefore depend upon our point of reference. This is also true of self and other. By climbing down the mountain of self, it is possible to ascend the mountain of other, and thereby cherish others as much as we presently cherish ourself."
Saturday, May 30, 2009
Graded on a Curve?
Who knew that blood tests could be graded on a curve?
Yesterday when I went to the doctor's office and got my blood tested to see if my system was strong enough for the chemo, I failed the test, but my doctor decided we could go ahead anyway! This is very good news.
The chemo nurses seemed very surprised - when they came back with the report, the number wasn't even that close, and they were ready to send me home. Thankfully, my oncologist/surgeon was in the office - he's often in surgery or at another clinic - and thankfully my nurse went back to ask him about Plan B. He's the only one there qualified to override the usual protocols. For the record, my ANC (absolute neutrophil count) was 0.6, after being 0.3 on Tuesday, and the cutoff to go ahead with treatment is usually 1.0.
But don't worry - he also prescribed a longer-lasting version of the white-cell enhancer (a cousin to Neupogen called Neulasta), so my counts should be back up in a few days - you could say my curve is on an upward trajectory. It's like a teacher passing you because they have every reason to expect you'll know the info in a few days : ) When does that ever happen!?
Both Neupogen and Neulasta are expensive drugs, so insurance will only pay for them when there's demonstrated need.
I really do think my doctor is Medicine Buddha, and that my nurses are all Bodhisattvas, and that your prayers pulled me through again, for which I am most grateful.
Yesterday when I went to the doctor's office and got my blood tested to see if my system was strong enough for the chemo, I failed the test, but my doctor decided we could go ahead anyway! This is very good news.
The chemo nurses seemed very surprised - when they came back with the report, the number wasn't even that close, and they were ready to send me home. Thankfully, my oncologist/surgeon was in the office - he's often in surgery or at another clinic - and thankfully my nurse went back to ask him about Plan B. He's the only one there qualified to override the usual protocols. For the record, my ANC (absolute neutrophil count) was 0.6, after being 0.3 on Tuesday, and the cutoff to go ahead with treatment is usually 1.0.
But don't worry - he also prescribed a longer-lasting version of the white-cell enhancer (a cousin to Neupogen called Neulasta), so my counts should be back up in a few days - you could say my curve is on an upward trajectory. It's like a teacher passing you because they have every reason to expect you'll know the info in a few days : ) When does that ever happen!?
Both Neupogen and Neulasta are expensive drugs, so insurance will only pay for them when there's demonstrated need.
I really do think my doctor is Medicine Buddha, and that my nurses are all Bodhisattvas, and that your prayers pulled me through again, for which I am most grateful.
Labels:
My health update
Story about Man with ALS Seeking Experimental Treatment
Here's a New York Times article, "Fighting for a Last Chance at Life" that ran on the cover of the May 17th issue about a man with ALS (often called "Lou Gehrig's disease") trying to get access to the one drug that might be able to help him.
I'm including it here as a reminder - to myself and maybe to you as well - that cancer isn't the only serious disease out there, although the word "cancer" seems to evoke more fear. Contemplating this story can help our training in compassion. Speaking of compassion, note especially the bold below, about the compassionate homeless man who helped when no one else would.
Some excerpts:
In the daylight, she still had trouble believing that her athletic, magnetic son had the devastating disease with an unknown cause, named for the 1930s New York Yankees star whose career was cut short by it. When Joshua’s racquetball racket flew out of his hand because he could not grip it, his mother’s diagnosis was tennis elbow. When the first neurologist mentioned A.L.S., she scheduled more tests, rooting for Lyme’s disease, multiple sclerosis or even cancer. ... Like the 5,600 other people given the diagnosis each year in the United States, Dr. Rothstein said, Joshua would almost certainly die of the disease in 2 to 5 years.
...
In late July, Joshua fell in the street near Times Square on a trip to New York with his wife, Joy, and could not get up. Joy could not lift him, and passers-by did not stop. Finally, a homeless person watching from the corner came to help.
The event was traumatic for Joshua, who was beginning to experience another symptom of the disease, too, a lack of control over his emotions. At the weekly poker game with his friends, he could no longer bluff.
...
Involuntary twitches known as fasciculations signaled which of Joshua’s muscles would be the next to go. His mother watched the disease spread from his right arm to his left arm to his left leg. A natural storyteller who had played toastmaster at friends’ weddings and charmed business associates with stories of his misadventures in surfing and snowboarding, Joshua began to slur his words in what is known as the “A.L.S. accent.”
...
“His [newborn] son keeps sitting on his lap saying ‘Hello, Dada,’ waiting for Josh to say hello,” [said Josh's Mom].
...
... the application [for the experimental drug to the FDA] had been rejected, [his Mom] stood up in disbelief.
“How could that be?” she asked, dazed.
“He said they had safety concerns,” ... “This for a drug that was approved for children!”
“Safety,” Kathy repeated. “And what, exactly, is safe about A.L.S.?”
...
His swallowing had deteriorated to the point that he choked after just two sips of an Orange Crush soda he asked his mother to bring him one night. When he finally agreed to have a feeding tube inserted in mid-February, his family viewed it as a statement that he wanted to live. But the tube also represented a new frontier in the heartbreak of A.L.S., which took away small pleasures every day, and sometimes big ones.
...
EPILOGUE: In April, Joshua signaled that he felt he was swallowing better, and to Joy and Kathy he seemed to be regaining tone in his voice. But on Easter Sunday, he was rushed to the hospital with pneumonia and is still on a ventilator. He continues to take [the experimental drug] Iplex every day.
I'm including it here as a reminder - to myself and maybe to you as well - that cancer isn't the only serious disease out there, although the word "cancer" seems to evoke more fear. Contemplating this story can help our training in compassion. Speaking of compassion, note especially the bold below, about the compassionate homeless man who helped when no one else would.
Some excerpts:
In the daylight, she still had trouble believing that her athletic, magnetic son had the devastating disease with an unknown cause, named for the 1930s New York Yankees star whose career was cut short by it. When Joshua’s racquetball racket flew out of his hand because he could not grip it, his mother’s diagnosis was tennis elbow. When the first neurologist mentioned A.L.S., she scheduled more tests, rooting for Lyme’s disease, multiple sclerosis or even cancer. ... Like the 5,600 other people given the diagnosis each year in the United States, Dr. Rothstein said, Joshua would almost certainly die of the disease in 2 to 5 years.
...
In late July, Joshua fell in the street near Times Square on a trip to New York with his wife, Joy, and could not get up. Joy could not lift him, and passers-by did not stop. Finally, a homeless person watching from the corner came to help.
The event was traumatic for Joshua, who was beginning to experience another symptom of the disease, too, a lack of control over his emotions. At the weekly poker game with his friends, he could no longer bluff.
...
Involuntary twitches known as fasciculations signaled which of Joshua’s muscles would be the next to go. His mother watched the disease spread from his right arm to his left arm to his left leg. A natural storyteller who had played toastmaster at friends’ weddings and charmed business associates with stories of his misadventures in surfing and snowboarding, Joshua began to slur his words in what is known as the “A.L.S. accent.”
...
“His [newborn] son keeps sitting on his lap saying ‘Hello, Dada,’ waiting for Josh to say hello,” [said Josh's Mom].
...
... the application [for the experimental drug to the FDA] had been rejected, [his Mom] stood up in disbelief.
“How could that be?” she asked, dazed.
“He said they had safety concerns,” ... “This for a drug that was approved for children!”
“Safety,” Kathy repeated. “And what, exactly, is safe about A.L.S.?”
...
His swallowing had deteriorated to the point that he choked after just two sips of an Orange Crush soda he asked his mother to bring him one night. When he finally agreed to have a feeding tube inserted in mid-February, his family viewed it as a statement that he wanted to live. But the tube also represented a new frontier in the heartbreak of A.L.S., which took away small pleasures every day, and sometimes big ones.
...
EPILOGUE: In April, Joshua signaled that he felt he was swallowing better, and to Joy and Kathy he seemed to be regaining tone in his voice. But on Easter Sunday, he was rushed to the hospital with pneumonia and is still on a ventilator. He continues to take [the experimental drug] Iplex every day.
Friday, May 29, 2009
MAN Food - Eat at Joe's
Before I forget ...
For all of you going to Summer Festival - and I hope that includes every one of you reading this blog - here's a recommendation for a great place to eat cheaply and healthfully at Manchester Airport ("MAN" for short). It's not classically he-man food - more like a quiche kind of place - called "Joe's," in Terminal 1 on the Arrivals level, next to Gregg's. Here's a link to more info: http://www.manchesterairport.co.uk/manweb.nsf/Content/RETAILERjoeskitchen
Note that there are links to their menus at the bottom of that page.
Rebecca, Jody and I had a delicious dinner there and were quite happy with the food (which includes various healthy and vegetarian options), the friendly service, and the comfortable cafe ambience.
If you're running for a train or want an even cheaper meal, I can also recommend the vegetarian boxed sandwiches to go at the Spar convenince store, which was straight ahead after exiting the baggage claim area in Terminal 2; I see they also have a location in the Terminal 3 Arrivals area. In addition to the usual Egg Mayo, they had Hummus, Felalfel & Hummus, and Feta Something sandwiches at very reasonable prices; I think all of those were organic.
P.S. Joe's page says that "Toad in the Hole" is one of their specialties. I had to look it up:
http://en.wikipedia.org/wiki/Toad_in_the_hole
They also offer "Bubble and squeak":
http://en.wikipedia.org/wiki/Bubble_and_squeak
For all of you going to Summer Festival - and I hope that includes every one of you reading this blog - here's a recommendation for a great place to eat cheaply and healthfully at Manchester Airport ("MAN" for short). It's not classically he-man food - more like a quiche kind of place - called "Joe's," in Terminal 1 on the Arrivals level, next to Gregg's. Here's a link to more info: http://www.manchesterairport.co.uk/manweb.nsf/Content/RETAILERjoeskitchen
Note that there are links to their menus at the bottom of that page.
Rebecca, Jody and I had a delicious dinner there and were quite happy with the food (which includes various healthy and vegetarian options), the friendly service, and the comfortable cafe ambience.
If you're running for a train or want an even cheaper meal, I can also recommend the vegetarian boxed sandwiches to go at the Spar convenince store, which was straight ahead after exiting the baggage claim area in Terminal 2; I see they also have a location in the Terminal 3 Arrivals area. In addition to the usual Egg Mayo, they had Hummus, Felalfel & Hummus, and Feta Something sandwiches at very reasonable prices; I think all of those were organic.
P.S. Joe's page says that "Toad in the Hole" is one of their specialties. I had to look it up:
http://en.wikipedia.org/wiki/Toad_in_the_hole
They also offer "Bubble and squeak":
http://en.wikipedia.org/wiki/Bubble_and_squeak
Protector Cells
In playing around with other posts, I neglected to give you an update on my treatment. I didn't get my scheduled chemo on Wednesday morning because my white blood counts were too low (my red blood counts were also a bit low, but not so low as to get in the way of chemo). Before every chemo treatment, they do blood tests ... and I didn't pass. Instead, they gave me a shot to boost production of my white cells, which as you probably know are like Dharma Protectors for the body, in that their job is to fight off infections (obstacles).
This website has a nice series of short pieces on Understanding Low White Blood Cell Counts. For more scientific detail, this Wikipedia entry on white blood cells has a nice chart with diagrams and b&w photo of blood.
In case you're interested, the shot was "CSF" (colony stimulating factor), often know by its brand name, Neupogen (which is pronounced like "Noop uh jen"); yesterday I got another shot of the same thing. It's usually very effective and works pretty quickly.
I was very surprised that my counts were low because I've been feeling so good; on the other hand, it's quite common for chemo drugs to lower blood counts, and the Cisplatin medicine nectar (chemo) I got last Tuesday is known for being especially good at it.
I was ordered to rest - but also to keep walking 30 minutes every day - and to avoid people and to eat only cooked food, so as to avoid infection.
If I pass the test later this morning, as I expect to, I'll get 4 hours of Taxol via my abdominal (IP) port.
No matter what happens with my chemo, I'll be at tonight's introduction to the Post Spring Festival Retreat at KMC Washington.
This website has a nice series of short pieces on Understanding Low White Blood Cell Counts. For more scientific detail, this Wikipedia entry on white blood cells has a nice chart with diagrams and b&w photo of blood.
In case you're interested, the shot was "CSF" (colony stimulating factor), often know by its brand name, Neupogen (which is pronounced like "Noop uh jen"); yesterday I got another shot of the same thing. It's usually very effective and works pretty quickly.
I was very surprised that my counts were low because I've been feeling so good; on the other hand, it's quite common for chemo drugs to lower blood counts, and the Cisplatin medicine nectar (chemo) I got last Tuesday is known for being especially good at it.
I was ordered to rest - but also to keep walking 30 minutes every day - and to avoid people and to eat only cooked food, so as to avoid infection.
If I pass the test later this morning, as I expect to, I'll get 4 hours of Taxol via my abdominal (IP) port.
No matter what happens with my chemo, I'll be at tonight's introduction to the Post Spring Festival Retreat at KMC Washington.
Thursday, May 28, 2009
Scoring Guide for Whining
A bit of humor: A good friend gave this to one of my travel companions, so that he could rate me on what the English call "whinging." You can rate me too : )
Scoring Guide for Whining
Scoring Guide for Whining
Wednesday, May 27, 2009
A Riddle for You
This is something that everyone strongly believes in but is invisible to the eye. What is it?
At Spring Festival Geshe-la talked about how in our society we think we believe only in what we can see.
But actually there are various phenomena we do believe in, even though we can't perceive them with our eye awareness (or ear, nose, tongue, or tactile awareness).
If we'd recognize that, I think we'd be able to move closer to believing in karma, which is very scientific. (Remind me sometime to write about the genetics analogy and maybe to write about gravity too.)
Hint: Maitreya
[scroll down for answer]
Answer: Love. At least that's the one I was thinking of.
Geshe-la explained in the same teaching that we all believe in tomorrow, even though we can't see it. Hard to argue with that.
He also taught a lot about the 3 kinds of love, especially wishing love.
The outpouring of love I felt at Festival was palpably real.
At Spring Festival Geshe-la talked about how in our society we think we believe only in what we can see.
But actually there are various phenomena we do believe in, even though we can't perceive them with our eye awareness (or ear, nose, tongue, or tactile awareness).
If we'd recognize that, I think we'd be able to move closer to believing in karma, which is very scientific. (Remind me sometime to write about the genetics analogy and maybe to write about gravity too.)
Hint: Maitreya
[scroll down for answer]
Answer: Love. At least that's the one I was thinking of.
Geshe-la explained in the same teaching that we all believe in tomorrow, even though we can't see it. Hard to argue with that.
He also taught a lot about the 3 kinds of love, especially wishing love.
The outpouring of love I felt at Festival was palpably real.
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