I didn't want to blog this until after the last weekend because my Meadville class was engaged in a special exercise and I didn't want this to have any chance of interfering. That may just be ego on my part. I dunno...
But in any case, I now have a food tube. Or "G-tube." Or "button." Or "PEG tube." My radiology doc insisted.
His rationale is that, given the type of radiation I'm receiving and the locations that are being irradiated mean that my mouth and throat may become so sore that swallowing becomes difficult. If so, I'm likely to cut back on my caloric intake, and lose body mass and strength. The food tube, which connects the outside world directly to the stomach, eliminates this problem completely, as I can just have a serving of a special nutritional liquid delivered straight to my tummy.
And having the food tube installed now -- before the throat soreness gets severe -- would be the easiest path to follow, as the description of its insertion below should explain. If I don't need the tube, it simply sits there, taped to my abdomen and it can simply be withdrawn at the end of the treatment schedule and no harm done.
I wasn't keen on the idea, but the doc's logic was unassailable.
The way this is installed is pretty cool: an endoscope (which is a flexible fiber-optic tube with a light on the business end) was inserted through my mouth and fed down my esophagus to my stomach. While I was under anasthesia, of course. The docs can then look around through the endoscope for the best place (left/right and up/down) for the penetration to take place.
The light is bright enough to be seen outside the body, so it's obvious to see where to start the penetration from the outside. (The image that comes to mind is Tinker Bell zooming left and right inside my innards. But it probably didn't look much like that. I wasn't paying attention.)
A needle was inserted through the abdominal wall and into the stomach -- aiming at the light. Then a suture (read "surgical thread") is passed through the wall and attached to the endoscope. So when the endoscope is withdrawn, it takes the suture with it. So at that point in the procedure, I had a string passing down my throat and out my tummy wall.
The PEG tube assembly ("PEG" standing for "Percutaneous Endoscopic Gastrostomy" -- Hi Lisa! Hi Emily! Hi Donna! Hi Barbara!) is attached to the upper end of the suture, then pulled down the esophagus and into place by tugging on the lower end of the string. "Tugging" is probably the wrong word, but you get the idea.
So there's nothing foreign in my mouth or throat after all this is over. I hope everyone got that.
I'm not clear on the anchoring methods used to secure the tube in place to both my abdominal wall on the outside and my stomach on the inside, but I am informed that people run marathons with tubes like this in place. And it doesn't leak -- I'm told. We'll see. And I'm allowed to sleep on my back or either side -- but not on my tummy. Which I never do anyway, so that's no loss.
The results of the operation have resulted in considerable physical distress from time to time and my first doses of pain medication, but I am assured that this will end soon as my body gets accustomed to the new device. And I now have Visiting Home Nurses (who are wonderful!!) making sure that the tube is clean and the wound is not infected and so forth.
The "rest of the story" includes some heroic work on the part of the radiology treatment center staff to get me to treatment on Friday. It's a very cool story I hope to relate later today or tomorrow.
Monday, June 29, 2009
Saturday, June 27, 2009
Hospital Overnights -- Revisited
In a blog posting back in May, I mentioned that I found it impossible to sleep during the two nights I was in the hospital because of all the noise and other interruptions. People talking loudly in the halls, automated equipment in my room making buzz/click/whirr noises, folks parading in and out taking blood pressure measurements on me and my roommate, and so forth.
Well, I had to spend another night in the hospital last Thursday, to recover from having a food tube installed in my stomach/abdominal wall. (I'll blog more about this later, but the basic idea is that my mouth and throat may, in the next couple of weeks, become so sore that swallowing will become a major challenge. Which means that I wouldn't eat enough. Which means that I would lose body mass and strength at a most unfortunate time... So install the tube now, when my body can handle the intrusion(s) involved as a precaution. So far so good, but there's a long way to go.)
Anyway, I decided on Thursday -- as soon as I got to my hospital room -- that sleep that night would not be an objective. That, by setting sleep as a goal, I was setting myself up for frustration and failure. And more fatigue.
The option was to sink as deeply as I could into rest -- whether awake or unconscious -- in an effort to address the fatigue factor I mentioned recently in a posting. When I did that, the voices in the hallway stopped being an irritant and became, instead, the sound of people living normal lives. The whirrs and buzzes and clicks stopped being impediments to sleep and became reminders of all the technological wonders from which I was benefiting. And, of course, I drifted off to sleep from time to time.
I'm experiencing some considerable discomfort from the newly installed feeding tube, but have been assured that these symptoms dissipate as my body adjusts to the new appliance in my tummy.
But the fatigue I wrote about is gone.
Well, I had to spend another night in the hospital last Thursday, to recover from having a food tube installed in my stomach/abdominal wall. (I'll blog more about this later, but the basic idea is that my mouth and throat may, in the next couple of weeks, become so sore that swallowing will become a major challenge. Which means that I wouldn't eat enough. Which means that I would lose body mass and strength at a most unfortunate time... So install the tube now, when my body can handle the intrusion(s) involved as a precaution. So far so good, but there's a long way to go.)
Anyway, I decided on Thursday -- as soon as I got to my hospital room -- that sleep that night would not be an objective. That, by setting sleep as a goal, I was setting myself up for frustration and failure. And more fatigue.
The option was to sink as deeply as I could into rest -- whether awake or unconscious -- in an effort to address the fatigue factor I mentioned recently in a posting. When I did that, the voices in the hallway stopped being an irritant and became, instead, the sound of people living normal lives. The whirrs and buzzes and clicks stopped being impediments to sleep and became reminders of all the technological wonders from which I was benefiting. And, of course, I drifted off to sleep from time to time.
I'm experiencing some considerable discomfort from the newly installed feeding tube, but have been assured that these symptoms dissipate as my body adjusts to the new appliance in my tummy.
But the fatigue I wrote about is gone.
Wednesday, June 24, 2009
In Case You Were Curious...
Some of you who may recall your sub-atomic physics (and possibly other folks as well...) may have wanted to know what kind of "radiation" is involved in "Radiation Oncology" -- or just "rads" to those of us who find ourselves using the term more often than we'd care to:
-- is this alpha particles?
-- gamma rays?
-- quarks?
After all, if medical folks are using antimatter in PET scans ("PET" standing for "positron emission tomography"), one's choices would seem to be pretty wide.
And the chats that Deb and I have had with our rad doc -- understandably -- focus on my therapy and recovery rather than academic matters like "what kind of rads?"
So the other day, as we were leaving the rad facility, I noticed a Physician's Assistant who seemed to have a little time on her hands.
So I asked her: "What kind of radiation?"
She asked back: "What kind of cancer?"
I said: "Head and neck."
She thought for a moment and said: "It would be X-Rays. Probably 6MV."
I asked: "MV?"
She said: "Yes, X-Rays at 6 megavolts."
Some Background and Implications
My rad doc had explained that the radiation level was high enough to be damaging to the cancer cells -- and some other healthy cells -- but not high enough to damage other types of cells. So the cancer cells take the hit, as do the cells in my salivary glands on the left side of my neck. And that damage will be permanent. And the bone in my jaws (as I understand it) will be permanently unable to recover from infection. So extraction of any teeth becomes a major issue. (But my dentist assures me that my teeth should be fine for the duration.) Skin cells will "burn," during the treatment, but should recover completely. Hair follicles in the beard area -- as mentioned before -- are goners.
But the muscle cells and nerve cells in the radiated area should be unaffected.
-- is this alpha particles?
-- gamma rays?
-- quarks?
After all, if medical folks are using antimatter in PET scans ("PET" standing for "positron emission tomography"), one's choices would seem to be pretty wide.
And the chats that Deb and I have had with our rad doc -- understandably -- focus on my therapy and recovery rather than academic matters like "what kind of rads?"
So the other day, as we were leaving the rad facility, I noticed a Physician's Assistant who seemed to have a little time on her hands.
So I asked her: "What kind of radiation?"
She asked back: "What kind of cancer?"
I said: "Head and neck."
She thought for a moment and said: "It would be X-Rays. Probably 6MV."
I asked: "MV?"
She said: "Yes, X-Rays at 6 megavolts."
Some Background and Implications
My rad doc had explained that the radiation level was high enough to be damaging to the cancer cells -- and some other healthy cells -- but not high enough to damage other types of cells. So the cancer cells take the hit, as do the cells in my salivary glands on the left side of my neck. And that damage will be permanent. And the bone in my jaws (as I understand it) will be permanently unable to recover from infection. So extraction of any teeth becomes a major issue. (But my dentist assures me that my teeth should be fine for the duration.) Skin cells will "burn," during the treatment, but should recover completely. Hair follicles in the beard area -- as mentioned before -- are goners.
But the muscle cells and nerve cells in the radiated area should be unaffected.
Fatigue
(I'm not complaining here. Just reporting.)
I've mentioned before that pain has never entered the picture in my illness or therapy -- and that continues to be the case. Thank the Good Lord!
But fatigue has become a constant, and most unwelcome, companion. One of my American Cancer Society booklets explains that this kind of fatigue cannot be addressed with rest: you take a nap because you have fatigue and you wake up with the same level of fatigue you started with. You probably needed the nap for other reasons, but the fatigue feels like some kind of bedrock condition.
At the start of a day, I make plans for what I want to accomplish. And by the end of the day, there's practically nothing done. Deb does most of the driving and has been huge in supporting me and keeping the household running. While I am deeply grateful for all she does, the situation makes me feel like a real slacker...
The Engineer-in-me tries to figure this out: Am I not eating enough? (Answer: well, my weight has been pretty stable, so maybe not...) Is this lack of sleep -- or at least continuous sleep? (Answer: could be -- I typically wake up three or four times a night to visit the bathroom...) Is it the reduction in my red- and white-blood cell count due to the chemo treatments? (Answer: how would I know?) Is it anxiety? (Answer: duh...) Will this get worse as the treatments continue? (Answer: oh, please no!) And then the key question: Is there anything I can do about this to make it go away? (Answer: ___________)
I see my chemo doc later today and hope to get some clarity on this. I'll let you know how it goes. Kind thoughts and prayers, as always, are deeply appreciated.
I've mentioned before that pain has never entered the picture in my illness or therapy -- and that continues to be the case. Thank the Good Lord!
But fatigue has become a constant, and most unwelcome, companion. One of my American Cancer Society booklets explains that this kind of fatigue cannot be addressed with rest: you take a nap because you have fatigue and you wake up with the same level of fatigue you started with. You probably needed the nap for other reasons, but the fatigue feels like some kind of bedrock condition.
At the start of a day, I make plans for what I want to accomplish. And by the end of the day, there's practically nothing done. Deb does most of the driving and has been huge in supporting me and keeping the household running. While I am deeply grateful for all she does, the situation makes me feel like a real slacker...
The Engineer-in-me tries to figure this out: Am I not eating enough? (Answer: well, my weight has been pretty stable, so maybe not...) Is this lack of sleep -- or at least continuous sleep? (Answer: could be -- I typically wake up three or four times a night to visit the bathroom...) Is it the reduction in my red- and white-blood cell count due to the chemo treatments? (Answer: how would I know?) Is it anxiety? (Answer: duh...) Will this get worse as the treatments continue? (Answer: oh, please no!) And then the key question: Is there anything I can do about this to make it go away? (Answer: ___________)
I see my chemo doc later today and hope to get some clarity on this. I'll let you know how it goes. Kind thoughts and prayers, as always, are deeply appreciated.
Tuesday, June 23, 2009
Hair -- Part 2
I confess that this is pure ego. But there does seem to be something about people in cancer treatment and concern about their hair.
Count me in that group.
I had the photo on the left taken roughly two weeks ago -- with a beard that might be called the "professorial look."
I had the photo on the right taken about a week ago -- what might be called... oh, I don't know what to call it.
(You can click on either photo for an enlarged image.)
As described in "Hair -- Part 1," I'm told by my rad doc that the part of my beard along the chin line will not grow back by the end of my radiation treatment. So I had my barber trim the beard down to a goatee -- acknowledging the seemingly inevitable.
With time, it may go down to just a mustache, or (Good Grief!) clean-shaven. We'll see...
Comments and suggestions are invited.
Monday, June 22, 2009
Ronzoni's Recommended Readings
Most of you have probably noticed the sage wisdom being dispensed in this blog by someone calling himself "Ronzoni." Ron is, in fact, someone I've known for decades -- first as a college roommate and then (and later) as a dear friend. Ron was the Best Man at my wedding.
Now, a number of people have recommended reading material for me during my therapy and convalescence. Almost all of this material is Important, Worthwhile, Uplifting, Informative, and Highly Useful. And goodness knows I get a lot of downtime for reading lately! And my stack of this literature should certainly see me through September. (But please don't stop recommending what you think would be helpful!!)
But after my posting about Orchids and Nero Wolfe detective stories, Ron suggested an alternative reading genre: fun.
In particular the Fantasy novels of Terry Pratchett, who is the #2 best-selling writer in England. (Anyone who can't guess who the #1 author is needs to pay closer attention!) Anyway, Pratchett has sold over 45 million copies of his Discworld books, which describe a wonderfully loony planet (shaped like a Frisbee) where the funniest, cleverest, most delightful and horrible things take place. And the good news is, you don't have to start with Book #1 (like you do with she-who-must-be-paid-royalties).
The books are available in local bookstores and on-line. As one might imagine with a market share like this. I've just finished my first book, but was totally hooked by the end of the first page.
Would you like these books? Well, here are a few passages to help you decide:
"Monsters are getting more uppity, too. I heard where this guy, he killed this monster in this lake, no problem, stuck its arm up over the door -- and you know what? Its mum come and complained. Its actual mom come right down to the hall next day and complained. Actually complained. That's the respect you get." or:
The dragon blinked with Jurassic patience. or:
His face was the color of a fermented dishcloth. or finally:
Up in the gloom the heads of dead animals haunted the walls. The Ramkins seemed to have endangered more species than an ice age.
Wonderful fun -- just when fun was needed.
Thank you Ronzoni!!
Now, a number of people have recommended reading material for me during my therapy and convalescence. Almost all of this material is Important, Worthwhile, Uplifting, Informative, and Highly Useful. And goodness knows I get a lot of downtime for reading lately! And my stack of this literature should certainly see me through September. (But please don't stop recommending what you think would be helpful!!)
But after my posting about Orchids and Nero Wolfe detective stories, Ron suggested an alternative reading genre: fun.
In particular the Fantasy novels of Terry Pratchett, who is the #2 best-selling writer in England. (Anyone who can't guess who the #1 author is needs to pay closer attention!) Anyway, Pratchett has sold over 45 million copies of his Discworld books, which describe a wonderfully loony planet (shaped like a Frisbee) where the funniest, cleverest, most delightful and horrible things take place. And the good news is, you don't have to start with Book #1 (like you do with she-who-must-be-paid-royalties).
The books are available in local bookstores and on-line. As one might imagine with a market share like this. I've just finished my first book, but was totally hooked by the end of the first page.
Would you like these books? Well, here are a few passages to help you decide:
"Monsters are getting more uppity, too. I heard where this guy, he killed this monster in this lake, no problem, stuck its arm up over the door -- and you know what? Its mum come and complained. Its actual mom come right down to the hall next day and complained. Actually complained. That's the respect you get." or:
The dragon blinked with Jurassic patience. or:
His face was the color of a fermented dishcloth. or finally:
Up in the gloom the heads of dead animals haunted the walls. The Ramkins seemed to have endangered more species than an ice age.
Wonderful fun -- just when fun was needed.
Thank you Ronzoni!!
Hiccups?
Okay, some of you may already know this. If so, please confirm the technique.
Others may be suffering even as you read this. If so, please give this a try.
Others may not believe it -- but I can assure you it worked like a charm the one time I tried it. Here it is:
If you're suffering from hiccups (and I had a really bad case after my chemo sessions last week...) simply take a Kleenex or tissue paper or something similar, douse it in rubbing alcohol, and hold it close under your nose and breathe in. Maybe two or three times.
I'd had hiccups for hours, but just three sniffs of rubbing alcohol, then two residual hiccups and they were outta here!! And didn't show up again. Cool or what?
If you're checked out on this, please leave a comment!! The world is waiting!!
Others may be suffering even as you read this. If so, please give this a try.
Others may not believe it -- but I can assure you it worked like a charm the one time I tried it. Here it is:
If you're suffering from hiccups (and I had a really bad case after my chemo sessions last week...) simply take a Kleenex or tissue paper or something similar, douse it in rubbing alcohol, and hold it close under your nose and breathe in. Maybe two or three times.
I'd had hiccups for hours, but just three sniffs of rubbing alcohol, then two residual hiccups and they were outta here!! And didn't show up again. Cool or what?
If you're checked out on this, please leave a comment!! The world is waiting!!
Sunday, June 21, 2009
Deb Pulls together a Dino Program!
Deb and I had scheduled a week away from home from Friday, June 5 to Saturday, June 13. The plan was that we would spend the first weekend in Meadville, PA (in the upper left-hand corner of the state) while I went to my spiritual healing school -- an institution about which I will blog about sometime soon -- and then drive to West Virginia.
In West Virginia, we would present eight separate dinosaur lectures -- one at each branch of the Kanawha County Public Library System, doing two lectures a day from Tuesday through Friday.
The conditions in West Virginia were wonderful! Our hotel in downtown Charleston overlooked the Kanawha River, which allowed us to watch the coal barges proceed rather majestically downstream -- morning to night. The local restaurants were quite nice -- and two of them were downright superb. The libraries themselves were in excellent shape and seemed to have all the investment money they could have wanted. The kids were great -- and the moms, dads, grammas and grandads were delighted to have us there.
Now the normal show for us goes this way: Randy does a half-hour "slide show" about the fossilization process, finding and extracting bones, why you can't find dinosaurs in your back yard (especially in West Virginia, where all the rocks are the wrong age!), and hiking through the badlands. That kind of stuff.
Then the second half of the show has all the kids sitting in a circle on the floor as we hand around actual dinosaur fossil material and ask (and answer!) questions about what we're seeing.
And Deb's job for the West Virginia part of the trip was going to be as companion, navigator, and assistant in setting up, taking down and carrying stuff. (But more was in the works for her!!)
At each library branch, numerous kids would show up early to get the best possible seat for the dinosaur show. If the show was scheduled to get underway at 1:30 PM, we would have kids pacing like caged Dromeosaurs outside the lecture room by 1:00. Not fair.
Now, I didn't have anything to show them yet as the laptop computer, digital projector, screen, PA system, etc., were still being set up. So what could we do?
Here's what we did! We set up a large table for Deb at the back of the lecture room with maybe 15 or 20 items in the middle plus two pieces of paper -- one on each corner of the table. Written on one piece of paper were the words "Dinosaur Bones" and written on the other piece were the words "Just Plain Old Rocks." Roughly half of the items on the table were, in fact, scrap pieces of dinosaur fossil. And the rest were rocks. (Plus a piece of local coal we found by the railyard.)
So now we could invite the kids to come as early as they liked into the lecture room and cluster around Deb and her table, as I finished setting up the "formal" part of the program. Deb would ask one of the kids to pick up any one of the objects, determine if it was a dinsosaur bone or a rock, then place it on the appropriately labeled piece of paper. And they were almost always correct! When it seemed appropriate, Deb would ask the child, "Okay, you got it right, but what was it about the object that made you think it as a bone? (or rock, if that was the case)?
Deb would keep this going until it was time to start the "official" start of the program. And after the "official" program was over, kids would drift back to Deb's table and go over the pieces again. And ask more questions. And make more observations.
Oh yes, and I should mention that most of the really attentive kids at these presentations were girls. So having Deb run the "Is It a Rock or a Bone?" table probably made it that much easier for the girls to cluster 'round and ask questions of such a knowledgeable and pleasant person. A person who clearly understood her subject!! (And did moms and dads enjoy watching their little girls immerse themselves in a subject normally relegated to 10-year-old boys? Oh, yes they did!!)
So this approach not only resolved the "caged Dromeosaur" issue, and extended the program by 20 or 30 minutes, but it also allowed each child the chance to answer for him or herself what is usually the most important question that they bring to such a program: "How do I know it's really a dinosaur bone?" After working with Deb for 5 minutes, they felt comfortable that they knew the answer -- because Deb allowed them the room to figure it out for themselves.
In West Virginia, we would present eight separate dinosaur lectures -- one at each branch of the Kanawha County Public Library System, doing two lectures a day from Tuesday through Friday.
The conditions in West Virginia were wonderful! Our hotel in downtown Charleston overlooked the Kanawha River, which allowed us to watch the coal barges proceed rather majestically downstream -- morning to night. The local restaurants were quite nice -- and two of them were downright superb. The libraries themselves were in excellent shape and seemed to have all the investment money they could have wanted. The kids were great -- and the moms, dads, grammas and grandads were delighted to have us there.
Now the normal show for us goes this way: Randy does a half-hour "slide show" about the fossilization process, finding and extracting bones, why you can't find dinosaurs in your back yard (especially in West Virginia, where all the rocks are the wrong age!), and hiking through the badlands. That kind of stuff.
Then the second half of the show has all the kids sitting in a circle on the floor as we hand around actual dinosaur fossil material and ask (and answer!) questions about what we're seeing.
And Deb's job for the West Virginia part of the trip was going to be as companion, navigator, and assistant in setting up, taking down and carrying stuff. (But more was in the works for her!!)
At each library branch, numerous kids would show up early to get the best possible seat for the dinosaur show. If the show was scheduled to get underway at 1:30 PM, we would have kids pacing like caged Dromeosaurs outside the lecture room by 1:00. Not fair.
Now, I didn't have anything to show them yet as the laptop computer, digital projector, screen, PA system, etc., were still being set up. So what could we do?
Here's what we did! We set up a large table for Deb at the back of the lecture room with maybe 15 or 20 items in the middle plus two pieces of paper -- one on each corner of the table. Written on one piece of paper were the words "Dinosaur Bones" and written on the other piece were the words "Just Plain Old Rocks." Roughly half of the items on the table were, in fact, scrap pieces of dinosaur fossil. And the rest were rocks. (Plus a piece of local coal we found by the railyard.)
So now we could invite the kids to come as early as they liked into the lecture room and cluster around Deb and her table, as I finished setting up the "formal" part of the program. Deb would ask one of the kids to pick up any one of the objects, determine if it was a dinsosaur bone or a rock, then place it on the appropriately labeled piece of paper. And they were almost always correct! When it seemed appropriate, Deb would ask the child, "Okay, you got it right, but what was it about the object that made you think it as a bone? (or rock, if that was the case)?
Deb would keep this going until it was time to start the "official" start of the program. And after the "official" program was over, kids would drift back to Deb's table and go over the pieces again. And ask more questions. And make more observations.
Oh yes, and I should mention that most of the really attentive kids at these presentations were girls. So having Deb run the "Is It a Rock or a Bone?" table probably made it that much easier for the girls to cluster 'round and ask questions of such a knowledgeable and pleasant person. A person who clearly understood her subject!! (And did moms and dads enjoy watching their little girls immerse themselves in a subject normally relegated to 10-year-old boys? Oh, yes they did!!)
So this approach not only resolved the "caged Dromeosaur" issue, and extended the program by 20 or 30 minutes, but it also allowed each child the chance to answer for him or herself what is usually the most important question that they bring to such a program: "How do I know it's really a dinosaur bone?" After working with Deb for 5 minutes, they felt comfortable that they knew the answer -- because Deb allowed them the room to figure it out for themselves.
Radiology -- Some Details
Okay, here's the companion piece to the chemotherapy posting from the other day.
The radiology treatment is aimed at destroying any remaining cancer cells that still exist in the site of the primary tumor. For me, this means that I am irradiated on my left cheek and the left side of my neck -- but also on the right side of my neck, as lymph flow moves across the neck from side to side, so some cancer cells may have taken up residence to starboard as well as port.
First step in the procedure was to create a form-fitting, open-mesh nylon mask that covers my face and head (but is open on the back so that it slips on and off fairly easily). The mask has a sturdy frame built around it, so that when I lie on the irradiation table, the mask can be secured to the table immobilizing my head in exactly the same position for each treatment. The open mesh nature of the mask makes it perfectly tolerable to wear. (And the fact that the treatment itself is fairly short is a big help as well!)
Second step was to do a CT scan of my head and neck to allow my rad doc to identify with great precision exactly where he wants the radiation applied. This information is programmed into the radiation machine (Sorry I don't know what it's officially called. We haven't been formally introduced...) so that every treatment is exactly like all the others. This machine, by the way, makes your typical CT or PET machine look like a high school science project.
Every weekday, then, Deb and I drive to the radiology center and wait my turn for the machine. The waiting is usually short and there is a make-it-yourself coffee machine and baskets of cookies and pretzels to keep us occupied while someone else is getting treatment. Since most everyone gets a treatment every day at the same time, you see the same folks in the waiting area every day. That's kind of nice. We don't talk much, but it's nice anyway.
When my name is called, I'm taken to the radiation machine room, which means walking through a very large doorway, past a very thick door. And the door and doorway are somber reminders that something special is going on.
The two technicians who run the equipment are both women, and seem to enjoy their work. They're funny. If I sit on the wrong part of the table, they bark at me and tell me to pay attention!! When I tell them I need careful instruction from them, they say: "Of course you do. You're a man. Fortunately you're clever enough to realize you need the help." That kind of stuff.
They make sure that I am precisely aligned on the table -- by means of securing my mask firmly to the table and using a laser to line up a very small black tattoo that they imprinted on my sternum during my first treatment.
The mask makes it difficult to open my eyes, which is just as well. So I don't actually see them leaving. But I am absolutely sure they are on the outsice of that very large doorway, and have closed that very large door behind them. There is music playing in the room, which is a real touch of kindness. I think it's satellite radio. One day it was really nice C&W. The next day it was late-60's Folk Rock. Then modern covers of classic jazz vocals. Then Frank Sinatra. Just really nice, easy acoustic companionship.
After a while, the machine starts to make noises. Growls, clicks, whirrs -- I haven't figured out yet what noise means what, but I'm still trying. Bright lights come on now and then. And I can hear when the radiation "gun" moves from one spot to another. So I know when it's aimed at my left cheek, my left neck, and when it shifts around to my right neck.
I think the entire procedure lasts maybe 10 minutes -- from start-up to wind-down. I lie on the table until the technicians come and remove my mask. If I try to sit up too quickly, I get barked at again. They tell me that, if my head hits the radiation gun device, that I will have to pay to get it repaired. The gun, that is -- not my head...
I then get a cheery "Good-by! See you tomorrow!" from both of them.
There is no pain or feeling of heat involved in this procedure -- other than being nagged by the two technicians. I understand that the effect of the radiation is cumulative, but for now, I feel practically no effects from the procedure.
The radiology treatment is aimed at destroying any remaining cancer cells that still exist in the site of the primary tumor. For me, this means that I am irradiated on my left cheek and the left side of my neck -- but also on the right side of my neck, as lymph flow moves across the neck from side to side, so some cancer cells may have taken up residence to starboard as well as port.
First step in the procedure was to create a form-fitting, open-mesh nylon mask that covers my face and head (but is open on the back so that it slips on and off fairly easily). The mask has a sturdy frame built around it, so that when I lie on the irradiation table, the mask can be secured to the table immobilizing my head in exactly the same position for each treatment. The open mesh nature of the mask makes it perfectly tolerable to wear. (And the fact that the treatment itself is fairly short is a big help as well!)
Second step was to do a CT scan of my head and neck to allow my rad doc to identify with great precision exactly where he wants the radiation applied. This information is programmed into the radiation machine (Sorry I don't know what it's officially called. We haven't been formally introduced...) so that every treatment is exactly like all the others. This machine, by the way, makes your typical CT or PET machine look like a high school science project.
Every weekday, then, Deb and I drive to the radiology center and wait my turn for the machine. The waiting is usually short and there is a make-it-yourself coffee machine and baskets of cookies and pretzels to keep us occupied while someone else is getting treatment. Since most everyone gets a treatment every day at the same time, you see the same folks in the waiting area every day. That's kind of nice. We don't talk much, but it's nice anyway.
When my name is called, I'm taken to the radiation machine room, which means walking through a very large doorway, past a very thick door. And the door and doorway are somber reminders that something special is going on.
The two technicians who run the equipment are both women, and seem to enjoy their work. They're funny. If I sit on the wrong part of the table, they bark at me and tell me to pay attention!! When I tell them I need careful instruction from them, they say: "Of course you do. You're a man. Fortunately you're clever enough to realize you need the help." That kind of stuff.
They make sure that I am precisely aligned on the table -- by means of securing my mask firmly to the table and using a laser to line up a very small black tattoo that they imprinted on my sternum during my first treatment.
The mask makes it difficult to open my eyes, which is just as well. So I don't actually see them leaving. But I am absolutely sure they are on the outsice of that very large doorway, and have closed that very large door behind them. There is music playing in the room, which is a real touch of kindness. I think it's satellite radio. One day it was really nice C&W. The next day it was late-60's Folk Rock. Then modern covers of classic jazz vocals. Then Frank Sinatra. Just really nice, easy acoustic companionship.
After a while, the machine starts to make noises. Growls, clicks, whirrs -- I haven't figured out yet what noise means what, but I'm still trying. Bright lights come on now and then. And I can hear when the radiation "gun" moves from one spot to another. So I know when it's aimed at my left cheek, my left neck, and when it shifts around to my right neck.
I think the entire procedure lasts maybe 10 minutes -- from start-up to wind-down. I lie on the table until the technicians come and remove my mask. If I try to sit up too quickly, I get barked at again. They tell me that, if my head hits the radiation gun device, that I will have to pay to get it repaired. The gun, that is -- not my head...
I then get a cheery "Good-by! See you tomorrow!" from both of them.
There is no pain or feeling of heat involved in this procedure -- other than being nagged by the two technicians. I understand that the effect of the radiation is cumulative, but for now, I feel practically no effects from the procedure.
Eating/Drinking "What's Good for You"
Thanks to all of you who have offered ideas about nourishment that would be helpful during my therapy regimens. There's a lot about nutrition -- especially during therapy -- that I don't understand, and frankly, I got pretty spooked when I found out where antioxidants fit into the picture:
General wisdom has it that antioxidants are good things. They catch up free radicals, which are bad things. And this is probably true unless you're on chemotherapy.
As I understand it, at least one purpose of the chemo regimen is the creation of free radicals to attack and kill the fast-growing cancer cells. So taking anything that reduces the number of free radicals or interferes with their "work" can substantially reduce the effectiveness of the chemo treatment.
All of my docs speak in unison by saying that any herbal supplements during this treatment is a Bad Idea. As my chemo doc put it: "If you take a handful of blueberries, you get micrograms of antioxidants. If you take an herbal supplement, you are probably going to get milligrams of antioxidants. [That is to say, ten times the amount of antioxidants -- or more.] So just eat normal, healthy, sensible meals."
So I imagine that the occasional bowl of miso soup (which I'm rather fond of) would be fine, but taken because you want some miso soup and not because you're trying to influence the course of treatment.
At least that's how I understand things right now...
General wisdom has it that antioxidants are good things. They catch up free radicals, which are bad things. And this is probably true unless you're on chemotherapy.
As I understand it, at least one purpose of the chemo regimen is the creation of free radicals to attack and kill the fast-growing cancer cells. So taking anything that reduces the number of free radicals or interferes with their "work" can substantially reduce the effectiveness of the chemo treatment.
All of my docs speak in unison by saying that any herbal supplements during this treatment is a Bad Idea. As my chemo doc put it: "If you take a handful of blueberries, you get micrograms of antioxidants. If you take an herbal supplement, you are probably going to get milligrams of antioxidants. [That is to say, ten times the amount of antioxidants -- or more.] So just eat normal, healthy, sensible meals."
So I imagine that the occasional bowl of miso soup (which I'm rather fond of) would be fine, but taken because you want some miso soup and not because you're trying to influence the course of treatment.
At least that's how I understand things right now...
Saturday, June 20, 2009
Chemotherapy -- Some Details
Several readers have asked for details of the two procedures that I'm currently undergoing -- that is, Chemotherapy and Radiotherapy. Given my recent "Blog ate my homework" experience, I thought I'd break the overall topic down into smaller parts.
(A number of you may well have a firmer grasp of this information than I do. Please feel free to correct, update or elaborate on what's written below!!)
First of all, you might want to know that there are dozens of different chemicals that could be used for chemotherapy -- either individually or in "cocktail" mixes. There are established protocols for different types of cancers, using different drugs in different combinations with different dosages and different schedules. I'm sure these, in turn are adjusted by the Medical Oncologist (a.k.a. the chemo doctor) based on the patient's condition, the extent of the cancer, and so forth.
This is one of those areas where faith comes in. You know you could never really understand all the in's and out's of your doc's decision to use a particular regimen for you, so you have to trust.
The facility where I'm being treated is located across the street from Chester County Hospital. Part of this office complex is lab set up to do blood testing (a critical, "need to know now" part of the overall treatment) and other testing as well (urine and what-not). There are also your classical examination rooms, where you sit one-on-one with a doctor and/or nurse.
But a large part of the complex is set up as a single room with maybe 15 or so reclining lounge chairs, set in informal-looking groups. When you walk in, there are usually several available, so if you want to watch the big-screen TV (whose volume is set quite low), there's probably a lounge to settle into. If you want to be in a small collection of lounges or a larger one, you typically have your choice. Beside each lounge there is a small table and a pole on wheels from which a drip bag of fluid can be mounted for intravenous injection. It's rather a nice place to be.
The room is run by a group of maybe 5 or 6 nurses, who come across as being wonderfully caring, competent, and efficient. They are almost always smiling and dispensing important information. The overall effect of their presence is wonderfully reassuring. No matter what problem you might develop while you're there, there will immediately be someone who's seen this issue before and dealt with it.
(I imagine that my treatment routine as outlined below is fairly typical, but imagine that there are many options as to how treatments are administered.)
The term that gets used around me for the actual chemical injected to kill the cancer cells is "toxic." The idea is that the chemical (in my case, something called "Cisplatin") attacks rapidly growing cells. This includes cancer cells, of course, but also includes normal blood cells and other types of cells that you'd really wish the Cisplatin wouldn't touch. But the science here is still developing...
The strategy is to get the Cisplatin flowing completely through my body (as its job is to track down and kill the microscopic particles of cancer that may have spread all over from the salivary gland where the primary tumor was located), then get the Cisplatin back out of my system as quickly as possible.
So we start the process by having one liter of saline solution injected intravenously -- to make sure that I am completely hydrated. This is followed by a bag of a diuretic. In other words, they want your body to be fully engaged in eliminating fluids even before the Cisplatin is injected. A third bag -- an antiemetic -- is also introduced to minimize the nausea and potential vomiting that occassionally show up as part of the process.
Then the Cisplatin, which turns out to be the smallest bag of the bunch is started. This drug bag seems to take practically no time to empty.
Finally, I'm given another one liter of saline solution to help clear the Cisplatin from my system. (Having the drug stay in the kidneys for any length of time can cause permanent damage to them.)
Did I mention that the drip bag poles were on wheels? Waltzing your drip bag to the bathroom is an oft-repeated event for the session.
Total time for a single session is running between 3 and 4 hours.
I'm told it takes 48 hours for the body to completely clear itself of the metabolized results of this procedure, and that it's vitally important to keep as hydrated as possible. At this point, our refrigerator is bulging with bottled water, Gatorade, diet/decaf soft drinks, Kefir (a wonderful beverage that tastes like a very nice strawberry yogurt), pink lemondade, various fruit juices, and so forth.
There is no pain whatsoever associated with the process, other than the needle stick. But the result of the treatment can leave you tired, nauseous, somewhat dizzy, and shaky for days afterwards. I'm sleeping a lot. And not blogging as much as I would like to...
I'm supposed to get 100 units of Cisplatin per treatment, but my doc has broken this into two back-to-back sessions of 50 units each. So I've just finished my first back-to-back treatment, then several weeks' rest (to allow my blood cells to resume a normal level), then a second back-to-back treatment, then several more weeks off, then a third and final session.
I believe that everything that can be done to make this experience as tolerable as possible is being done. I trust my medical team, and have become especially fond of the nursing staff, who seem to know everything I want to know, and are so pleased to be of help.
More on Radiotherapy later.
(A number of you may well have a firmer grasp of this information than I do. Please feel free to correct, update or elaborate on what's written below!!)
First of all, you might want to know that there are dozens of different chemicals that could be used for chemotherapy -- either individually or in "cocktail" mixes. There are established protocols for different types of cancers, using different drugs in different combinations with different dosages and different schedules. I'm sure these, in turn are adjusted by the Medical Oncologist (a.k.a. the chemo doctor) based on the patient's condition, the extent of the cancer, and so forth.
This is one of those areas where faith comes in. You know you could never really understand all the in's and out's of your doc's decision to use a particular regimen for you, so you have to trust.
The facility where I'm being treated is located across the street from Chester County Hospital. Part of this office complex is lab set up to do blood testing (a critical, "need to know now" part of the overall treatment) and other testing as well (urine and what-not). There are also your classical examination rooms, where you sit one-on-one with a doctor and/or nurse.
But a large part of the complex is set up as a single room with maybe 15 or so reclining lounge chairs, set in informal-looking groups. When you walk in, there are usually several available, so if you want to watch the big-screen TV (whose volume is set quite low), there's probably a lounge to settle into. If you want to be in a small collection of lounges or a larger one, you typically have your choice. Beside each lounge there is a small table and a pole on wheels from which a drip bag of fluid can be mounted for intravenous injection. It's rather a nice place to be.
The room is run by a group of maybe 5 or 6 nurses, who come across as being wonderfully caring, competent, and efficient. They are almost always smiling and dispensing important information. The overall effect of their presence is wonderfully reassuring. No matter what problem you might develop while you're there, there will immediately be someone who's seen this issue before and dealt with it.
(I imagine that my treatment routine as outlined below is fairly typical, but imagine that there are many options as to how treatments are administered.)
The term that gets used around me for the actual chemical injected to kill the cancer cells is "toxic." The idea is that the chemical (in my case, something called "Cisplatin") attacks rapidly growing cells. This includes cancer cells, of course, but also includes normal blood cells and other types of cells that you'd really wish the Cisplatin wouldn't touch. But the science here is still developing...
The strategy is to get the Cisplatin flowing completely through my body (as its job is to track down and kill the microscopic particles of cancer that may have spread all over from the salivary gland where the primary tumor was located), then get the Cisplatin back out of my system as quickly as possible.
So we start the process by having one liter of saline solution injected intravenously -- to make sure that I am completely hydrated. This is followed by a bag of a diuretic. In other words, they want your body to be fully engaged in eliminating fluids even before the Cisplatin is injected. A third bag -- an antiemetic -- is also introduced to minimize the nausea and potential vomiting that occassionally show up as part of the process.
Then the Cisplatin, which turns out to be the smallest bag of the bunch is started. This drug bag seems to take practically no time to empty.
Finally, I'm given another one liter of saline solution to help clear the Cisplatin from my system. (Having the drug stay in the kidneys for any length of time can cause permanent damage to them.)
Did I mention that the drip bag poles were on wheels? Waltzing your drip bag to the bathroom is an oft-repeated event for the session.
Total time for a single session is running between 3 and 4 hours.
I'm told it takes 48 hours for the body to completely clear itself of the metabolized results of this procedure, and that it's vitally important to keep as hydrated as possible. At this point, our refrigerator is bulging with bottled water, Gatorade, diet/decaf soft drinks, Kefir (a wonderful beverage that tastes like a very nice strawberry yogurt), pink lemondade, various fruit juices, and so forth.
There is no pain whatsoever associated with the process, other than the needle stick. But the result of the treatment can leave you tired, nauseous, somewhat dizzy, and shaky for days afterwards. I'm sleeping a lot. And not blogging as much as I would like to...
I'm supposed to get 100 units of Cisplatin per treatment, but my doc has broken this into two back-to-back sessions of 50 units each. So I've just finished my first back-to-back treatment, then several weeks' rest (to allow my blood cells to resume a normal level), then a second back-to-back treatment, then several more weeks off, then a third and final session.
I believe that everything that can be done to make this experience as tolerable as possible is being done. I trust my medical team, and have become especially fond of the nursing staff, who seem to know everything I want to know, and are so pleased to be of help.
More on Radiotherapy later.
Thursday, June 18, 2009
What Really Happened to Yesterday's Update...
I'm not likely ever to get a chance at this punchline again, so I'm going for it now:
To begin with, most of you understand how important this blogging has become for me. So many of you have written in thanks for my efforts. Some of you want every detail I can dig up and some of you just want to know how I feel -- and I'm grateful to all of you who care enough to follow the story here.
So blogging is an extremely important, self-assigned project for me that I want to do every day. For you. For me. It helps so much in keeping me "being Randy," in the words of my Angel of the Sandwich Shop.
Now to the events of yesterday afternoon: after posting my "Hair" piece (no pun intended) yesterday, I decided to have a go at posting how the chemo and rad stuff was going. I had 45 minutes until dinner -- should have been enough time.
So I carefully crafted a description of the chemo regimen, the rad regimen, a summary statement, and a "looking forward" section; and then checking them for grammar, punctuation, continuity, and half a dozen other Englishy things that this blog software doesn't do. Whew, I was finally ready to post. Took 40 minutes to compose. And now it's almost dinner time. And bed time immediately afterwards.
Now, to understand what happened next, you need to realize that the Blogspot software automatically saves my deathless prose to their server every several minutes. And that sometimes the file gets corrupted during the transmission. And that the Blogspot software tells me when it received a corrupted version of my posting, but it tells me in a rather inconspicuous place. One that I don't look at often. At least often enough...
Because what I think happened was that, when I clicked on the "Publish Post" button at the bottom of the screen, I was informed that the posting could not be accomplished. And I'm guessing that it was because there was a corrupted version on-file at that moment in the Blogspot server. Darn.
And when I went back to look at the text I had so carefully prepared, it was all gone. Double Darn.
Punchline: my Blog ate my homework.
(Now wasn't that worth all the preceding reading? And it's all true!!)
To begin with, most of you understand how important this blogging has become for me. So many of you have written in thanks for my efforts. Some of you want every detail I can dig up and some of you just want to know how I feel -- and I'm grateful to all of you who care enough to follow the story here.
So blogging is an extremely important, self-assigned project for me that I want to do every day. For you. For me. It helps so much in keeping me "being Randy," in the words of my Angel of the Sandwich Shop.
Now to the events of yesterday afternoon: after posting my "Hair" piece (no pun intended) yesterday, I decided to have a go at posting how the chemo and rad stuff was going. I had 45 minutes until dinner -- should have been enough time.
So I carefully crafted a description of the chemo regimen, the rad regimen, a summary statement, and a "looking forward" section; and then checking them for grammar, punctuation, continuity, and half a dozen other Englishy things that this blog software doesn't do. Whew, I was finally ready to post. Took 40 minutes to compose. And now it's almost dinner time. And bed time immediately afterwards.
Now, to understand what happened next, you need to realize that the Blogspot software automatically saves my deathless prose to their server every several minutes. And that sometimes the file gets corrupted during the transmission. And that the Blogspot software tells me when it received a corrupted version of my posting, but it tells me in a rather inconspicuous place. One that I don't look at often. At least often enough...
Because what I think happened was that, when I clicked on the "Publish Post" button at the bottom of the screen, I was informed that the posting could not be accomplished. And I'm guessing that it was because there was a corrupted version on-file at that moment in the Blogspot server. Darn.
And when I went back to look at the text I had so carefully prepared, it was all gone. Double Darn.
Punchline: my Blog ate my homework.
(Now wasn't that worth all the preceding reading? And it's all true!!)
Wednesday, June 17, 2009
Full Health Update Tomorrow -- Promise!!
Life got a bit hectic today -- three doctor appointments before 10:30 AM and didn't get out of chemotherapy until after 4:00 PM.
But things are going well -- and I'm delighted to be into this "search and destroy" part of my therapy finally.
Details tomorrow. Honest!!
But things are going well -- and I'm delighted to be into this "search and destroy" part of my therapy finally.
Details tomorrow. Honest!!
Hair -- Part 1
Well, I lost a lot of hair yesterday...
at the barbershop.
In military terminology, this might be called a double pre-emptive strike:
First of all, as most of you know, chemotherapy can disable your hair follicles temporarily and cause any existing hair to fall out. Like all over. Eyelashes, eyebrows, arms, legs. Seriously, all over...
But I may not lose all of my hair to chemo -- or maybe not even most of my hair to chemo. Or I may not lose any hair at all to chemo. It turns out that there over a hundred different pharmaceuticals that might be used for chemo -- either stand-alone or in conjunction with others (a.k.a., a "cocktail"). And my stand-alone drug, called Cisplatin, does not normally make the patient bald.
Hey!!
But I needed a haircut anyway, so I stopped in to see my barber and, just in case, told him to cut my hair much shorter than usual. (After all, I'd rather have it cut and leave it on his floor than have it fall out and clog the drain in my bathtub.)
Secondly, my radiation doc (as opposed to my chemo doc) tells me that his treatment is likely to permanently disable the hair follicles on my left cheek down to and including chinline, so the full beard that I've been sporting for the last 10 years or so seems doomed forever. This is a little tough, because I first grew the beard in the badlands of Alberta on one of my first dinosaur digs. And I thought about those wonderful days every time I looked in the mirror and decided -- once again -- not to shave.
Ah, the follicles of youth...
So after the top-of-the-head issue was decided, I asked my barber for his opinion: should we leave a goatee? mustache only? clean shaven? And he sensibly pointed out that doing a goatee leaves the other two options readily available. So that's what we did.
I think the goatee makes me look like Brad Pitt. From the point of the chin to just under the nose. If you ignore everything else. Including the color of the hair.
Bottom line "A": next time you see me, I will certainly have less hair on my top and sides of my head -- and maybe none at all.
Bottom line "B": with one chemo session and two radio sessions done, this is the biggest problem I've had to face. Color me grateful!
at the barbershop.
In military terminology, this might be called a double pre-emptive strike:
First of all, as most of you know, chemotherapy can disable your hair follicles temporarily and cause any existing hair to fall out. Like all over. Eyelashes, eyebrows, arms, legs. Seriously, all over...
But I may not lose all of my hair to chemo -- or maybe not even most of my hair to chemo. Or I may not lose any hair at all to chemo. It turns out that there over a hundred different pharmaceuticals that might be used for chemo -- either stand-alone or in conjunction with others (a.k.a., a "cocktail"). And my stand-alone drug, called Cisplatin, does not normally make the patient bald.
Hey!!
But I needed a haircut anyway, so I stopped in to see my barber and, just in case, told him to cut my hair much shorter than usual. (After all, I'd rather have it cut and leave it on his floor than have it fall out and clog the drain in my bathtub.)
Secondly, my radiation doc (as opposed to my chemo doc) tells me that his treatment is likely to permanently disable the hair follicles on my left cheek down to and including chinline, so the full beard that I've been sporting for the last 10 years or so seems doomed forever. This is a little tough, because I first grew the beard in the badlands of Alberta on one of my first dinosaur digs. And I thought about those wonderful days every time I looked in the mirror and decided -- once again -- not to shave.
Ah, the follicles of youth...
So after the top-of-the-head issue was decided, I asked my barber for his opinion: should we leave a goatee? mustache only? clean shaven? And he sensibly pointed out that doing a goatee leaves the other two options readily available. So that's what we did.
I think the goatee makes me look like Brad Pitt. From the point of the chin to just under the nose. If you ignore everything else. Including the color of the hair.
Bottom line "A": next time you see me, I will certainly have less hair on my top and sides of my head -- and maybe none at all.
Bottom line "B": with one chemo session and two radio sessions done, this is the biggest problem I've had to face. Color me grateful!
Monday, June 15, 2009
Blanche Update
A number of readers have asked how Blanche, our orchid, is doing. (Blanche was sent to us by my family in Baltimore.)
Blanche is doing splendidy well, thanks for asking. When she arrived, she had three blooms on one spray and five on the other. And there were two buds at the end of each spray as well. And now all four of those buds have bloomed and look every bit as breathtakingly beautiful as the others. So that's a total of 12 blooms. And twelve is a very powerful number, as most of you know... But that's not the amazing part of the story.
Blanche's pot came with several seemingly dead sticks artfully arranged behind the orchid. Very lovely: the opulence of the orchid blooms in sharp contrast to the dead sticks.
Well, it turns out that the sticks weren't dead at all. Two weeks ago, they began to sprout green leaves as well (see photo -- and click on it for an enlarged view). And I'm taking this as a metaphor for my own resurgent health. A sign, if you will...
Thank you for asking about Blanche. She appreciates the attention.
Sunday, June 14, 2009
Therapy Schedule
Sometime soon, I want to blog about the wonderful week Deb and I had in West Virginia doing dinosaur presentations throughout the Kanawha County Library System. Great facilites and wonderful, receptive, enthusiastic people. And we got paid!!
But right now, I want to bring you up-to-date on my therapy schedule:
Monday, Deb and I will be at the radiation therapy center doing a "dry run" on the machine set-up. This is to assure that the equipment will aim precisely and repeatedly at exactly the right parts of my head and neck to kill whatever cancer cells may remain in the area of the original tumor -- the one that was removed during the surgery back in May.
Tuesday, if everything checks out on Monday, the radiation sessions will begin and continue Monday through Friday for six or seven weeks.
Tuesday also marks the beginning of chemotherapy. Each of these sessions (one on Tuesday and one on Wednesday) will last roughly four hours. Then there will be a break for a couple of weeks while my body recovers, then another two sessions, then another break, then a third set of two sessions.
The chemo sessions are meant to kill any and all cancer cells that have migrated from the original site of the tumor to elsewhere in my body.
As always, your thoughts, prayers, comments and love are deeply appreciated. This journey would be so much harder for me without the support that comes from so many places. Thank you. And thank you! And thank you!!
Everyone reacts differently to a treatment regimen like this -- and no one can tell me how much all of this will affect my normal activity routines.
I've decided to bow out of a number of upcoming juggling gigs for two reasons: (a) I'm not sure that I will be physically capable of performing for one or more hours, and (b) the chemo and radio docs both say I should stay out of the sun as much as possible while treatment is going on.
Drat.
I'm sorry to pass up the performances, but deeply grateful that I could fit in the West Virginia program with only minimal delay to the treatment schedule.
(I'll try to fill you in on West Virginia tomorrow!)
But right now, I want to bring you up-to-date on my therapy schedule:
Monday, Deb and I will be at the radiation therapy center doing a "dry run" on the machine set-up. This is to assure that the equipment will aim precisely and repeatedly at exactly the right parts of my head and neck to kill whatever cancer cells may remain in the area of the original tumor -- the one that was removed during the surgery back in May.
Tuesday, if everything checks out on Monday, the radiation sessions will begin and continue Monday through Friday for six or seven weeks.
Tuesday also marks the beginning of chemotherapy. Each of these sessions (one on Tuesday and one on Wednesday) will last roughly four hours. Then there will be a break for a couple of weeks while my body recovers, then another two sessions, then another break, then a third set of two sessions.
The chemo sessions are meant to kill any and all cancer cells that have migrated from the original site of the tumor to elsewhere in my body.
As always, your thoughts, prayers, comments and love are deeply appreciated. This journey would be so much harder for me without the support that comes from so many places. Thank you. And thank you! And thank you!!
Everyone reacts differently to a treatment regimen like this -- and no one can tell me how much all of this will affect my normal activity routines.
I've decided to bow out of a number of upcoming juggling gigs for two reasons: (a) I'm not sure that I will be physically capable of performing for one or more hours, and (b) the chemo and radio docs both say I should stay out of the sun as much as possible while treatment is going on.
Drat.
I'm sorry to pass up the performances, but deeply grateful that I could fit in the West Virginia program with only minimal delay to the treatment schedule.
(I'll try to fill you in on West Virginia tomorrow!)
Tuesday, June 9, 2009
Greetings from Beautiful West Virginia!
Several months ago, I had contracted with the Kanawha County (West Virginia) Public Library System to present a series of eight dinosaur lectures -- one at each of their branch library locations. And it sounded like such fun!
However, given the uncertainty of my treatment regimen -- in particular, when the chemo and rads would start -- I called them several weeks ago and told them I might not be able to make it. And I looked around for a replacement that might be interested in doing the project, but had no luck.
My contact person at the Library understood completely and couldn't have been more supportive. So that was going to be the end of that. Maybe next year...
Until my Angel of the Sandwich Shop showed up. (See "Reclaiming my Life" under the May postings of this very blog.)
And one of the excellent points my Angel made to me was that I needed to continue to be myself. I couldn't allow myself to dwindle until there was nothing left but the disease. As she spoke, I realized that I needed to call the Library Lady back again and tell her in no uncertain terms that I would be there. For all 8 presentations. Unless she had already filled the time slots with some other presentations...
After consulting with her superiors, the Library Lady told me that they would be delighted to have me come and do all 8 branches. Two a day. Tuesday through Friday.
So Deb and I went to Meadville for a weekend at my Healing School (which I still promise to blog about sometime soon...), and drove from there to Charleston WV on the following Monday. Which was yesterday. And we've just finished the first two presentations. Yay!!
"So what?" you may well ask. Well, here's what:
-- it gives me a chance to brag about what a wonderful navigator my wife is. Haven't missed a turn yet!
-- it's given me a chance to interact with some wonderful youngsters -- who will, with any luck, become wonderful paleontologists who may remember back to a library presentation they attended when they were kids growing up in West Virginia.
-- it's given Deb and me a chance to be together for an entire week away from the house and all the obligations which come along with being at home. A vacation in West Virginia (which is every bit as lovely as people say!) and getting paid for being here!
-- it helps explain why I haven't been blogging for a while. Just no time!!
-- it says that I've recognized an opportunity to live my life more completely -- even if it means postponing treatment by a week or so...
-- it lets me tell you that I am deeply grateful for the opportunity to do something that I love to do.
It's extremely unlikely that I will be going to Alberta this summer, but Deb and I are now in the middle of our Annual Dinosaur Trip anyway. It's a lot closer than Alberta, and there are a lot more trees.
However, given the uncertainty of my treatment regimen -- in particular, when the chemo and rads would start -- I called them several weeks ago and told them I might not be able to make it. And I looked around for a replacement that might be interested in doing the project, but had no luck.
My contact person at the Library understood completely and couldn't have been more supportive. So that was going to be the end of that. Maybe next year...
Until my Angel of the Sandwich Shop showed up. (See "Reclaiming my Life" under the May postings of this very blog.)
And one of the excellent points my Angel made to me was that I needed to continue to be myself. I couldn't allow myself to dwindle until there was nothing left but the disease. As she spoke, I realized that I needed to call the Library Lady back again and tell her in no uncertain terms that I would be there. For all 8 presentations. Unless she had already filled the time slots with some other presentations...
After consulting with her superiors, the Library Lady told me that they would be delighted to have me come and do all 8 branches. Two a day. Tuesday through Friday.
So Deb and I went to Meadville for a weekend at my Healing School (which I still promise to blog about sometime soon...), and drove from there to Charleston WV on the following Monday. Which was yesterday. And we've just finished the first two presentations. Yay!!
"So what?" you may well ask. Well, here's what:
-- it gives me a chance to brag about what a wonderful navigator my wife is. Haven't missed a turn yet!
-- it's given me a chance to interact with some wonderful youngsters -- who will, with any luck, become wonderful paleontologists who may remember back to a library presentation they attended when they were kids growing up in West Virginia.
-- it's given Deb and me a chance to be together for an entire week away from the house and all the obligations which come along with being at home. A vacation in West Virginia (which is every bit as lovely as people say!) and getting paid for being here!
-- it helps explain why I haven't been blogging for a while. Just no time!!
-- it says that I've recognized an opportunity to live my life more completely -- even if it means postponing treatment by a week or so...
-- it lets me tell you that I am deeply grateful for the opportunity to do something that I love to do.
It's extremely unlikely that I will be going to Alberta this summer, but Deb and I are now in the middle of our Annual Dinosaur Trip anyway. It's a lot closer than Alberta, and there are a lot more trees.
Thursday, June 4, 2009
Feelings
So yesterday, I'm visiting my E/N/T doc to check up on things in preparation for chemo and rads, which start the week of June 15th.
Dr. Chuma and I are going over where we've been over the last couple of months, and he's trying to open as many avenues of conversation as he can: is there anything Randy needs to know or wants to talk about at this cusp in his healing journey? (This guy is good. Have I mentioned that before?)
I happen to mention the 7mm whatever-it-is that showed up on the MRI -- the last scan that I'd had performed. (Yes, it might be residual primary tumor. Yes, it might be an inflamed lymph node. Yes, it might be a result of the neck surgery he performed on me in May.)
And all of a sudden, Dr. Chuma pulls on a pair of purple latex gloves and puts one hand inside my mouth and the other on the outside of my cheek. He goes ever so carefully over every available area where residual primary tumor may still be lurking. His two hands are mirroring each other so that he can gently touch everywhere -- feeling, but not quite squeezing the cheek tissue between his right- and left-hand fingers. Probing for the whatever-it-is. It's a very thorough examination, and I'm with him every moment, trying to feel inside the skin whatever he is feeling from the outside.
When he's satisfied that he's examined this tissue as completely as he can, he pulls off the gloves and discards them. He looks at me and says, "I can't feel a thing in there." And neither can I.
(We can take a short break here while you try to imagine the relief I feel. Okay, we can take a long break, too.)
Now that 7mm whatever-it-is may still be there and we both just missed it. And it may have disappeared (the "inflamed lymph node that settled down" scenario). And whether or not it is still there, rads and chemo may or may not be effective in assuring that the cancer will not recur.
But for one precious moment after months of feeling diseased, I feel healthy.
And grateful. For everything and everyone.
Dr. Chuma and I are going over where we've been over the last couple of months, and he's trying to open as many avenues of conversation as he can: is there anything Randy needs to know or wants to talk about at this cusp in his healing journey? (This guy is good. Have I mentioned that before?)
I happen to mention the 7mm whatever-it-is that showed up on the MRI -- the last scan that I'd had performed. (Yes, it might be residual primary tumor. Yes, it might be an inflamed lymph node. Yes, it might be a result of the neck surgery he performed on me in May.)
And all of a sudden, Dr. Chuma pulls on a pair of purple latex gloves and puts one hand inside my mouth and the other on the outside of my cheek. He goes ever so carefully over every available area where residual primary tumor may still be lurking. His two hands are mirroring each other so that he can gently touch everywhere -- feeling, but not quite squeezing the cheek tissue between his right- and left-hand fingers. Probing for the whatever-it-is. It's a very thorough examination, and I'm with him every moment, trying to feel inside the skin whatever he is feeling from the outside.
When he's satisfied that he's examined this tissue as completely as he can, he pulls off the gloves and discards them. He looks at me and says, "I can't feel a thing in there." And neither can I.
(We can take a short break here while you try to imagine the relief I feel. Okay, we can take a long break, too.)
Now that 7mm whatever-it-is may still be there and we both just missed it. And it may have disappeared (the "inflamed lymph node that settled down" scenario). And whether or not it is still there, rads and chemo may or may not be effective in assuring that the cancer will not recur.
But for one precious moment after months of feeling diseased, I feel healthy.
And grateful. For everything and everyone.
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