Dave’s Great Adventure, Book 2
Chapter 2, Verse 10
March 11, 2004
Special Humor Edition
Hey, if you don’t think there’s anything funny about dying on a cross while you sing songs, well, I‘ve got more stuff for you.
Today I, as my kids would say, "screwed the pooch."
I was in the shower getting ready to go to the lab, early as usual, to get blood drawn. As I was washing up with the washcloth, the tail end of the cloth apparently wrapped around the Optiflow and, that easily, yanked it out of my chest! It was a bit of a flail at the time, as I had soap in my eyes, shampoo in my hair and couldn't see well, but suddenly the catheter was sliding down my chest into the tub, with a stream of blood hot on its heels.
Now, the wound is so high up on my chest that I can't see it without a mirror, so I clawed around madly, trying to see through soap blurred eyes, trying to cover the "exit wound" with one hand to stop the bleeding while I tried to rinse off my head and body with the other, all the time wondering, "Do I put pressure on the skin wound, or on my jugular where the 22 caliber hole is?" I guess my platelets are doing okay. By the time I rinsed off, the bleeding had completely stopped. I walked down to see Kathy with the catheter in my hand, and was met with a gasp. Now, we'll need the damn thing any day now (with luck, if my white count will ever go up) so I called the clinic, with great trepidation, to confess my sin. What they'll have to do is replace it with another, different kind of catheter, before we can collect any stem cells! Dammit! Details to follow.
My white count as of today is exactly, precisely what it has been since we started doing the blood counts. That's not what I wanted to hear. Every day that it stays low delays the start of our collection process. Tomorrow I go downtown for my blood tests and they'll do some more specialized testing of my white cells. Likely more expensive tests, to boot.
I was talking to Joan today. She asked, "What, didn't you have enough material for your DGAs?" Hay Man Ray, up in Montana, said he thought I was catching his “clumsies.” His dad used to say to him that he “was as clumsy as a bear cub masturbating with boxing gloves.” Now, that’s an interesting visual.
See, I thought you’d think that was funny.
I have another short exchange that I’d like to send along to you, an e-mail exchange that had us laughing loudly at the descriptions of two technophobes that some of you know. We’ve been corresponding with Clovis and Phil Dennis up in Juneau since last summer when we stayed in their B&B for a while. Clovis responded to a recent “Adventure” letter, setting off a series of messages. See if this stuff makes you laugh too. Caution: mild profanity ensues!
You guys don’t know Phil, but he and I are both curmudgeonly, anachronistic stick-in-the-muds. We don’t do well with change or new technology.
Last Monday Clovis wrote the following in response to my letter, in which I mentioned getting the new and improved seventeen inch monitor
“As soon as your pop quiz hit my screen, I printed it out, then took it. Did very well too, only missed a couple but finding the answers!! Zowee! I print out everything you send because unlike some people I know, we only have an old 12/13 inch monitor. The letters on our old black keyboard have worn off too, and since Phil types with “two fingers looking,” I painted crude letters on the keys with paint and the sharp point of a pencil. Talk about high tech! We do not want to miss a thing you write and appreciate very much your sharing, so keep those cards and letters coming.... I have a different take on money than most. There is always another dollar to be made and if you have it, use it for what is meaningful to you. And I know your life is meaningful to you and Kathy and a whole lot of other people, so do what you can to keep it viable!”
I responded: “Hey, are you giving me permission to get the $6000 plasma TV, or what?"
I type with two fingers too. I haven't worn off the letters, yet, but I have ruined more than one keyboard by slamming a fist into it when the computer wouldn't do what I thought it was supposed to do. So I get new keyboards frequently! I actually broke the desk one time. I guess I need anger management classes. I get frustrated with technology that (seemingly) gets in the way, rather than helping. Of course, it's really my fault, most of the time.”
Then Phil wrote:
“Morning David: I smile (broadly) at your mention of intemperate behavior vis a vis technology. As a college freshmen and aspiring writer, I therefore assumed I needed to know how to type. How could I become the next Ernie Hemingway in longhand? Then I ran into the GD machine, AND a school marm anal retentive control freak instructor. One fine day when she was castrating us in singsong fashion by subtracting 10 words per mistake, I swept up the dang typewriter in my strong male arms and in one fell rebellious swoop pitched it out the open window. It helped the fall and impact being’s how we were on the building’s third floor! Of course that ended my typing class and mayhaps my writing career. And cost me all the shekels in my jeans. But to this very moment, I have no regrets. So, I identify with you my friend. It's basically a Japanese conspiracy to destroy what little remains of our masculinity and mental health.
And, yes by all means buy the dang plasma TV. Cheers, Phil “
That led to my thoughts on the matter:
“Hi Phil,
I had to laugh out loud while reading your descriptions of the typing class. You had the balls to do what I have always wanted to do. I have felt on so many occasions that it would give me tremendous satisfaction to take the f-ing computer and toss it off our second floor deck. Unfortunately, we have grass below so it wouldn't give a very satisfying "crash" unlike your third floor impact.
At work we went from traditional hand written charts to fully computerized charts about four years ago. Not a good time of my life. "Piece of sh*t!" emanated from my office doors on a regular, almost hourly basis. The fact that I can't type without looking at the keyboard didn't help, as I'd laboriously type (I really mean "peck out" with my forefingers) a long complex patient note, only to look up and find that caps lock had unexpectedly been on the whole, or part of the time, or that I had unexpectedly hit some other key which stopped the note from even being entered, and the note resultantly looked like hell. "Piece of sh*t!" Slam, bang!
The company replaced a couple of keyboards and a few mice, at first. Then I got the word that any more would be at my own expense. They sent someone out to help me learn the computer system. I thought she was a computer geek. She spent hours with me, showing me shortcuts, tricks to make it easier, etc. Only later did I find that she was a shrink sent out as sort of a damage control manager, trying to make me take it easier on the company equipment. Hey, they thought I was crazy or something! "Piece of sh*t!"
Clovis responded:
“Hi David,
Now I know what Kathy has put up with all long years because you sound JUST like Phil!! I'm sure she is like me and doesn't get excited when you rant and rave about technology, but if there is anyone else around, they are certainly taken aback. Even the dogs run and hide when Phil starts yelling to the gods. "Piece of sh*t!" How many times have I heard that! We too laughed out loud at your last descriptions. Wonderful writing. Makes us appreciate even more the effort you have taken to communicate with us. A labor of love really, thank you again.”
And with that, I’ll close. I think this is by far the shortest DGA I’ve sent out since I first got the fuzzies. Enjoy the respite.
Later,
Dave
Thursday, March 11, 2004
Wednesday, March 10, 2004
How Low Can Your White Count Go?
Dave’s Great Adventure, Book Two
Chapter 2, Verse 9
March 10, 2004
It’s Limbo Time...again!
About sixteen months ago I used this phrase to describe the fact that my white counts were extremely low. You remember, don’t you? “How low can you go?“ At that time my white counts, after four rounds of chemotherapy, with the previously noted Rituxan Fludara and Cytoxan (FCR for short), were down to 1,100 (normal is about 6,000 to 12,000 for most folks). Some of you may actually recall that event. Well, it turns out I hadn’t seen anything. My white counts are now so low, the lab would call the numbers “panic” values, meaning they would hurriedly call the doctor who was treating the patient with the news that he/she was in critical danger as indicated by the numbers.
But more about that in a moment.
I’m going to send this letter out to the whole mail-list again, as I know at least a few of my correspondents are out of town, and others may have not checked their e-mail from recent days yet, and so don‘t know about my request for a response. Our friends in Castle Rock are in fact in Mexico at this moment, a buddy from here in town is, I know, in San Francisco (what's that town's nickname...?) teaching computer stuff, and I suspect others may be on spring break, etc. So that’s why all of you are still getting this communication, for the moment. But I won’t keep pestering all of you too much longer.
I got a number of comments on the “pop test” that I sent out recently. If anyone out there didn’t look at it because they thought I was seriously sending out a test, look again. I hope you would get a giggle out of it. My wonderful colleague Joan, whose fault it is that there was a test at all (damn, gave away an answer!) wrote “Are you sure somebody didn’t put some LSD in your tubes? I laughed so hard I had tears in my eyes...I’m to blame for all this?”
Atlanta Kathy, who works in a real estate office said, ”I laughed so hard some of the brokers here wanted to read the test. Anyway keep me on the list. I sometimes forget you’re fighting a disease. You make things so funny... only YOU, Dave, could come up with a Pop Test.”
Our friend Cindy in El Paso said she was “worried” about me. Regarding the pop quiz she said: “You know you haven't been going through this round too long yet. I was really worried about you before, but now....now, I'm really worried. This stuff is really getting to you this time. You thought the throwing up was bad; I'm concerned that this side effect might even be worse!! :) And hey, how did you find out about my hooking job??? That's confidential information! :) You still make me laugh!” Actually, Cindy really isn’t a hooker, not that I know of for sure....
My cousin/step-brother Tom, also out in the Hotlanta area, said, “Someone has way too much time on his hands.” Well, that’s true. I’m not working, and I can’t get out of the house much. Hey, what else can I do except dream up pop tests? By the way, Tom didn’t report his score. Could it be that he didn’t do well? What about it, Tom?
Our brother-in-law, the Hay Man Ray (he’s an agronomist at Montana State, in Bozeman, specializing in feed grasses[is that right, Ray?]) said, “I enjoyed your quiz. A different way to keep folks up to date, but a lot of work, I suspect.” Actually it wasn’t a lot of work, just a lot of fun. I didn’t really have to try to make the test tricky like HE does to his students!
Now, my sister, Deb, out in Sacramento (which is near “The City,” hint, hint), hasn’t even taken the test yet. She’ll have to get docked a few points for tardiness. And former colleague, patient and great friend Marcia, from the lovely city of Heidelberg, Germany, said “I loved your pop test and think I did well, only missing three (you caught me on the Mensa thing; wasn’t reading it right, as I know you did that on purpose.” What, me try to trick you guys, my gentle readers, on a pop quiz?
Now, curiously, almost all the folks who wrote back about the “quiz” and actually admitted taking it, reported that they passed with flying colors. I wonder if they really checked their answers against the key. The only honest folks in the bunch were Kathy's sister Carol and husband Frank, down in “Duke City” (hey, that could be another test question...”Where is Duke City, and what is it’s legal name?”). They reported “failing miserably.” But really, how many of you REALLY knew that “The City” on the quiz wasn’t here in Colorado. Probably just my li’l sis who lives in nearby Sacramento (which is “Sacto” in Calspeak).
And my good buddy, former colleague and former boss, Cesar, out in Florida, wrote, “Frankly, I do not know whether - when and if faced with the challenges you are facing- I will be able to keep the even keel and humor that you impart on your notes.”
Well you know, you just can’t take yourself too seriously.
The night before I was to get the Cytoxan, and expecting to become very ill soon after, I lay awake in bed. But what was going through my mind? Worries about the risks, the side effects, the possible fatal outcome (unlikely, but possible)? Not at all. I was thinking about jokes about my therapy. (See, I really am a manic-depressive.) You know, I never heard of hypergraphia before that article from the paper that I recently mentioned (oops, there goes another test answer), but I’m beginning to believe in it!
The next morning the first two hours of the treatment were just hydration through my chest tubes, without any drugs to make me feel goofy. So I spent that time writing down the things I had been thinking about the night before. We’re all going to go through something like this, unless we’re (un)lucky (take your pick) enough to have a sudden massive fatal heart attack, car wreck, or something. Hey, you have to roll with it. You can only do what you can do. Don’t worry about the rest, the things beyond your control.
Now, hold that thought while I go back to the report on my labs, technical stuff in which I’m sure you all will be very interested. I went in for the first of my daily complete blood counts (CBC) Monday. Now that we’re done with all the chemotherapy we need to see how my counts do, and when/if they rebound enough to start the stem cell collection. Man, I’m really anxious to get on with that process, if only to get the tube taken out of my chest. It’s really hard to sleep on the thing, always worrying about pulling on it, feeling the plastic hubs against my skin when I try to sleep on my chest, and just generally being aware of the foreign structure attached to my body.
As an “insider,” I had arranged to sneak in the lab before it opened, avoiding the early morning wait, but more importantly, avoiding the crowds of sick folks, as I expected my white count, the infection fighting cells, to be low. I really don’t want to pick up any infections now, after what I just went through with the RSV (...and what’s that stand for...and how do you spell it? Just checking up on you guys). So we got there at about a quarter ‘til eight, snuck in, got the blood drawn and then left just as the sick hoards were arriving. Then we waited for the call with the results.
Our friend, Christine, who works in the OB clinic and has access to the computer information, was looking for the results for us. They finally showed up by about two in the afternoon. I was amazed! The test showed that my red cells were normal, and my clotting cells, the platelets, were down to about a third normal, but still adequate to make me clot okay, but my white counts! Normal white counts vary from about 3,000 to about 12,000 for most folks, with an average number bring probably 6,000-10,000 white cells per CC of blood. But my white count was 300. That’s not missing a zero. And the count of my bacterial fighting white cells was zero. It was reported as 0.0. There were no detectable “neutrophils” in my blood.
Now, I’ve never, in my medical career, seen numbers that low. Of course, I have rarely worked with leukemic patients on chemotherapy. I would have thought that numbers that low would be incompatible with life. Those numbers are, to be quite frank, scary to a gynecologist! We all have bacteria all over and inside our bodies, and all that’s keeping them from killing us are the white cells, and the antibodies our lymphocytes produce. Right now I know I have deadly bacteria in my sinuses, my gut, my lungs, and on my skin. What I don’t quite understand is why I feel so (relatively) normal. Why am I not sick?
I guess my transplanter doc, Jeff, expected these numbers. I didn’t even get a call advising me of how low they were. He has me on antibiotics, which, in the short term, will help keep many of the bacteria at bay. Meanwhile, I’m washing my hands compulsively, keeping my hands away from my eyes and mouth and hoping that these numbers rebound rapidly before something bad happens. I’m not even brushing my teeth or flossing too vigorously, because each time each of us brushes, we introduce bacteria into our bloodstreams. Normally it’s not a problem; now it could be, for me.
So I snuck into the lab again Tuesday morning, to get another CBC done. Then we went home to be shut-ins again for the rest of the day. We got another call from Christine about mid-afternoon. My numbers hadn’t improved at all. That worried me a bit, so I called the folks at the RMCC and talked to them a bit. It turns out that they expect such numbers on a regular basis after the kind of treatment I’ve gotten. But, they thought I might have rebounded at least a bit. However, since there was no rebound, we won’t start the collection yet. I’ll keep getting my blood counts at my clinic for now and when they finally start up, I’ll be going downtown to the RMCC for labs and, eventually, the big procedure.
In old news, I was talking to our daughter in Dallas. She asked why I was so excited about the new monitor screen, the 17” one that I bought quite by surprise while chemo-brained. She couldn’t understand my enthusiasm. It turns out that she, as a computer geek of sorts at Sprint (don’t call her with any complaints, she just does software applications) has nineteen and twenty-one inch monitors!! She obviously doesn't understand what it’s like to be an amateur on the PC at home!
And through all this, my hair continues to “gently” fall out. It’s noticeably thin now, and I expect a massive fallout soon. And there is no longer any hair on my chest. No, wait...there never was any hair on my chest, sorry. Meanwhile, my beard has essentially stopped growing. Ah, yes, THERE’S the silver lining...I don’t have to expend time and resources on shaving for a while.
And to close, let me go back to not taking one's self too seriously. There’s a little song I’d like to share with you. It’s the ending theme from that wondrously irreverent movie, “The Life of Brian,” done by the Monty Python troupe a number of years ago, as they hung on crosses awaiting execution at the hands of the Romans. If you’d like to listen to it, and see the complete lyrics, you can go to: http://thebards.net/music/lyrics/A_Faire_To_Remember/Bright_Side_Of_Life.shtml
“...always look on the bright side of life
Always look on the light side of life.
For life is quite absurd
and death’s the final word
You must always face the curtain with a bow
Forget about your sin--give the audience a grin
Enjoy it--it’s your last chance anyhow.
So… always look on the bright side of death
Just before you draw your terminal breath.
Life’s a piece of sh*t
When you look at it
Life’s a laugh and death’s a joke it’s true
You’ll see it’s all a show
Keep ‘em laughing as you go
Just remember that the last laugh is on you.
And, always look on the bright side of life
Always look on the right side of life...
...I mean, what have you got to lose? You know, you
come from nothing-- you’re going back to nothing. What have you lost--
Nothing!”
And with that, I’ll ask again, if you haven’t responded, letting me know that you’d like to be kept on this list, just send me a quick “Reply” and I’ll add you to the updated list. My brother, Dan, down Texas way jokes that this is just a cheap way to troll for e-mail. But like I said in the last letter, I truly don’t want to be continually spamming folks who have grown weary of this tale. I suspect most of them will never see the message anyway and will sort of be dropped off without any hurt feelings on either side. I must admit, though, that my request has generated a number of very nice e-mails from friends, just as Dan suspected. I always appreciate hearing from you guys. So, until the inevitable next verse....
Dave
“Life’s a laugh and death’s a joke it’s true
Just remember that the last laugh is on you”
Chapter 2, Verse 9
March 10, 2004
It’s Limbo Time...again!
About sixteen months ago I used this phrase to describe the fact that my white counts were extremely low. You remember, don’t you? “How low can you go?“ At that time my white counts, after four rounds of chemotherapy, with the previously noted Rituxan Fludara and Cytoxan (FCR for short), were down to 1,100 (normal is about 6,000 to 12,000 for most folks). Some of you may actually recall that event. Well, it turns out I hadn’t seen anything. My white counts are now so low, the lab would call the numbers “panic” values, meaning they would hurriedly call the doctor who was treating the patient with the news that he/she was in critical danger as indicated by the numbers.
But more about that in a moment.
I’m going to send this letter out to the whole mail-list again, as I know at least a few of my correspondents are out of town, and others may have not checked their e-mail from recent days yet, and so don‘t know about my request for a response. Our friends in Castle Rock are in fact in Mexico at this moment, a buddy from here in town is, I know, in San Francisco (what's that town's nickname...?) teaching computer stuff, and I suspect others may be on spring break, etc. So that’s why all of you are still getting this communication, for the moment. But I won’t keep pestering all of you too much longer.
I got a number of comments on the “pop test” that I sent out recently. If anyone out there didn’t look at it because they thought I was seriously sending out a test, look again. I hope you would get a giggle out of it. My wonderful colleague Joan, whose fault it is that there was a test at all (damn, gave away an answer!) wrote “Are you sure somebody didn’t put some LSD in your tubes? I laughed so hard I had tears in my eyes...I’m to blame for all this?”
Atlanta Kathy, who works in a real estate office said, ”I laughed so hard some of the brokers here wanted to read the test. Anyway keep me on the list. I sometimes forget you’re fighting a disease. You make things so funny... only YOU, Dave, could come up with a Pop Test.”
Our friend Cindy in El Paso said she was “worried” about me. Regarding the pop quiz she said: “You know you haven't been going through this round too long yet. I was really worried about you before, but now....now, I'm really worried. This stuff is really getting to you this time. You thought the throwing up was bad; I'm concerned that this side effect might even be worse!! :) And hey, how did you find out about my hooking job??? That's confidential information! :) You still make me laugh!” Actually, Cindy really isn’t a hooker, not that I know of for sure....
My cousin/step-brother Tom, also out in the Hotlanta area, said, “Someone has way too much time on his hands.” Well, that’s true. I’m not working, and I can’t get out of the house much. Hey, what else can I do except dream up pop tests? By the way, Tom didn’t report his score. Could it be that he didn’t do well? What about it, Tom?
Our brother-in-law, the Hay Man Ray (he’s an agronomist at Montana State, in Bozeman, specializing in feed grasses[is that right, Ray?]) said, “I enjoyed your quiz. A different way to keep folks up to date, but a lot of work, I suspect.” Actually it wasn’t a lot of work, just a lot of fun. I didn’t really have to try to make the test tricky like HE does to his students!
Now, my sister, Deb, out in Sacramento (which is near “The City,” hint, hint), hasn’t even taken the test yet. She’ll have to get docked a few points for tardiness. And former colleague, patient and great friend Marcia, from the lovely city of Heidelberg, Germany, said “I loved your pop test and think I did well, only missing three (you caught me on the Mensa thing; wasn’t reading it right, as I know you did that on purpose.” What, me try to trick you guys, my gentle readers, on a pop quiz?
Now, curiously, almost all the folks who wrote back about the “quiz” and actually admitted taking it, reported that they passed with flying colors. I wonder if they really checked their answers against the key. The only honest folks in the bunch were Kathy's sister Carol and husband Frank, down in “Duke City” (hey, that could be another test question...”Where is Duke City, and what is it’s legal name?”). They reported “failing miserably.” But really, how many of you REALLY knew that “The City” on the quiz wasn’t here in Colorado. Probably just my li’l sis who lives in nearby Sacramento (which is “Sacto” in Calspeak).
And my good buddy, former colleague and former boss, Cesar, out in Florida, wrote, “Frankly, I do not know whether - when and if faced with the challenges you are facing- I will be able to keep the even keel and humor that you impart on your notes.”
Well you know, you just can’t take yourself too seriously.
The night before I was to get the Cytoxan, and expecting to become very ill soon after, I lay awake in bed. But what was going through my mind? Worries about the risks, the side effects, the possible fatal outcome (unlikely, but possible)? Not at all. I was thinking about jokes about my therapy. (See, I really am a manic-depressive.) You know, I never heard of hypergraphia before that article from the paper that I recently mentioned (oops, there goes another test answer), but I’m beginning to believe in it!
The next morning the first two hours of the treatment were just hydration through my chest tubes, without any drugs to make me feel goofy. So I spent that time writing down the things I had been thinking about the night before. We’re all going to go through something like this, unless we’re (un)lucky (take your pick) enough to have a sudden massive fatal heart attack, car wreck, or something. Hey, you have to roll with it. You can only do what you can do. Don’t worry about the rest, the things beyond your control.
Now, hold that thought while I go back to the report on my labs, technical stuff in which I’m sure you all will be very interested. I went in for the first of my daily complete blood counts (CBC) Monday. Now that we’re done with all the chemotherapy we need to see how my counts do, and when/if they rebound enough to start the stem cell collection. Man, I’m really anxious to get on with that process, if only to get the tube taken out of my chest. It’s really hard to sleep on the thing, always worrying about pulling on it, feeling the plastic hubs against my skin when I try to sleep on my chest, and just generally being aware of the foreign structure attached to my body.
As an “insider,” I had arranged to sneak in the lab before it opened, avoiding the early morning wait, but more importantly, avoiding the crowds of sick folks, as I expected my white count, the infection fighting cells, to be low. I really don’t want to pick up any infections now, after what I just went through with the RSV (...and what’s that stand for...and how do you spell it? Just checking up on you guys). So we got there at about a quarter ‘til eight, snuck in, got the blood drawn and then left just as the sick hoards were arriving. Then we waited for the call with the results.
Our friend, Christine, who works in the OB clinic and has access to the computer information, was looking for the results for us. They finally showed up by about two in the afternoon. I was amazed! The test showed that my red cells were normal, and my clotting cells, the platelets, were down to about a third normal, but still adequate to make me clot okay, but my white counts! Normal white counts vary from about 3,000 to about 12,000 for most folks, with an average number bring probably 6,000-10,000 white cells per CC of blood. But my white count was 300. That’s not missing a zero. And the count of my bacterial fighting white cells was zero. It was reported as 0.0. There were no detectable “neutrophils” in my blood.
Now, I’ve never, in my medical career, seen numbers that low. Of course, I have rarely worked with leukemic patients on chemotherapy. I would have thought that numbers that low would be incompatible with life. Those numbers are, to be quite frank, scary to a gynecologist! We all have bacteria all over and inside our bodies, and all that’s keeping them from killing us are the white cells, and the antibodies our lymphocytes produce. Right now I know I have deadly bacteria in my sinuses, my gut, my lungs, and on my skin. What I don’t quite understand is why I feel so (relatively) normal. Why am I not sick?
I guess my transplanter doc, Jeff, expected these numbers. I didn’t even get a call advising me of how low they were. He has me on antibiotics, which, in the short term, will help keep many of the bacteria at bay. Meanwhile, I’m washing my hands compulsively, keeping my hands away from my eyes and mouth and hoping that these numbers rebound rapidly before something bad happens. I’m not even brushing my teeth or flossing too vigorously, because each time each of us brushes, we introduce bacteria into our bloodstreams. Normally it’s not a problem; now it could be, for me.
So I snuck into the lab again Tuesday morning, to get another CBC done. Then we went home to be shut-ins again for the rest of the day. We got another call from Christine about mid-afternoon. My numbers hadn’t improved at all. That worried me a bit, so I called the folks at the RMCC and talked to them a bit. It turns out that they expect such numbers on a regular basis after the kind of treatment I’ve gotten. But, they thought I might have rebounded at least a bit. However, since there was no rebound, we won’t start the collection yet. I’ll keep getting my blood counts at my clinic for now and when they finally start up, I’ll be going downtown to the RMCC for labs and, eventually, the big procedure.
In old news, I was talking to our daughter in Dallas. She asked why I was so excited about the new monitor screen, the 17” one that I bought quite by surprise while chemo-brained. She couldn’t understand my enthusiasm. It turns out that she, as a computer geek of sorts at Sprint (don’t call her with any complaints, she just does software applications) has nineteen and twenty-one inch monitors!! She obviously doesn't understand what it’s like to be an amateur on the PC at home!
And through all this, my hair continues to “gently” fall out. It’s noticeably thin now, and I expect a massive fallout soon. And there is no longer any hair on my chest. No, wait...there never was any hair on my chest, sorry. Meanwhile, my beard has essentially stopped growing. Ah, yes, THERE’S the silver lining...I don’t have to expend time and resources on shaving for a while.
And to close, let me go back to not taking one's self too seriously. There’s a little song I’d like to share with you. It’s the ending theme from that wondrously irreverent movie, “The Life of Brian,” done by the Monty Python troupe a number of years ago, as they hung on crosses awaiting execution at the hands of the Romans. If you’d like to listen to it, and see the complete lyrics, you can go to: http://thebards.net/music/lyrics/A_Faire_To_Remember/Bright_Side_Of_Life.shtml
“...always look on the bright side of life
Always look on the light side of life.
For life is quite absurd
and death’s the final word
You must always face the curtain with a bow
Forget about your sin--give the audience a grin
Enjoy it--it’s your last chance anyhow.
So… always look on the bright side of death
Just before you draw your terminal breath.
Life’s a piece of sh*t
When you look at it
Life’s a laugh and death’s a joke it’s true
You’ll see it’s all a show
Keep ‘em laughing as you go
Just remember that the last laugh is on you.
And, always look on the bright side of life
Always look on the right side of life...
...I mean, what have you got to lose? You know, you
come from nothing-- you’re going back to nothing. What have you lost--
Nothing!”
And with that, I’ll ask again, if you haven’t responded, letting me know that you’d like to be kept on this list, just send me a quick “Reply” and I’ll add you to the updated list. My brother, Dan, down Texas way jokes that this is just a cheap way to troll for e-mail. But like I said in the last letter, I truly don’t want to be continually spamming folks who have grown weary of this tale. I suspect most of them will never see the message anyway and will sort of be dropped off without any hurt feelings on either side. I must admit, though, that my request has generated a number of very nice e-mails from friends, just as Dan suspected. I always appreciate hearing from you guys. So, until the inevitable next verse....
Dave
“Life’s a laugh and death’s a joke it’s true
Just remember that the last laugh is on you”
Monday, March 8, 2004
Cytoxan, Rituxan, Random Stuff and My Hair Is Falling Out!
Dave’s Great Adventure, Book Two
Chapter 2, Verse 8
March 8, 2004
Steady progress, I guess....
It snowed, gently, Thursday night.
It was still dark when we got up. Kathy and I had to be up early again, by our standards (and I know there are plenty of you who have no sympathy for us, but we have no kids in the house). We had to be back at the Rocky Mountain Cancer Center by eight or so for my last round of Rituxan. That means getting up before six to get ready to leave and for the almost hour long drive. Plus, getting ready to go anywhere in the morning takes longer than it used to. No longer is it just the shower, teeth, shave and deodorant routine. Now I get to dress the “exit wound” on my chest, cleaning it and scrubbing the area with antibacterial stuff, then covering it. I usually tape the tubing to my chest to try to minimize the chance of ripping it out accidentally. Then I clean and flush the tubing every morning with heparin syringes. Then, I get out two vials of Neupogen, pick out appropriate syringes and alcohol swabs, and pick a site in which to inject myself (at about $1000 a shot), rotating the place each morning. Then, I can get dressed.
I came down to eat a quick breakfast that Kathy always has prepared for me. By then the sun was up, and I saw the scene behind our home, the scene left by the spring snowfall. Every branch and every needle on the Austrian pine behind the house was whitened with the weight of its new color. The aspens, still skeletal this time of year, were coated as well, but perhaps not as beautiful. Just across our back fence, all of 20 feet or so from the house, the prairie had been dusted as well. Each stem of prairie grass and each branch of scrub brush and yucca in the green belt leaned under its transient pure color, hiding its autumn colors. A heavier coating than we sometimes see when hoarfrost covers the remaining natural grasses to our north in colder times, certainly, and just as wonderful to behold. We see photographs of such scenes in galleries and on restaurant walls, and always think they are so lovely, so beautiful, and think to ourselves thoughts that compliment the photographer/artist. But the person manning the camera is not the artist. That person merely freezes the visual poetry for others to enjoy. It’s God’s natural beauty that we are gifted with in so many ways, on a regular ever-changing schedule. And it’s all around us, in the trees, like the snow we were seeing, in the faces of our children and grandchildren and spouses, in the orange and blue Bronco sunsets we have over the Rocky Mountains. We just have to see what we’re looking at. Pictures are nice, but we can get the genuine item through our window panes.
We drove downtown to the RMCC. Got there a little early...as usual. We checked in and went to the back, where they were a little surprised to see us for some reason. So we went into a room, I got on the bed and Kathy took the chair, awaiting whatever nurse was to care for me that day. Generally someone is there within a couple of minutes. One young nurse came in; “Are you here for a bone marrow biopsy?“ she asked. I declined the invitation. We waited, waited, waited. I napped. The Cytoxan has again been causing me simultaneous fatigue and insomnia. I’d forgotten about that particular effect. I seem to be tired all the time, but have problems sleeping. After close to an hour Kelly, who had helped us before showed up and got right on things with the infusions, premeds (more than I needed, again) and flushing of lines, etc. She liked me better now that I didn’t require having an IV put in. We gathered from her comments that she didn’t realize that we were to be there early and wasn‘t scheduled to be there until later as she had stayed late the evening before to help with a procedure. But she was great, got things going and very soon we were underway with the last of the four doses of Rituxan that I’ll have to have during this treatment. We were done by noon, despite that late start.
Some of you guys may remember (I say this a lot) that when I had Cytoxan before, ‘way back in “aught 2,” I had unusual cravings, generally for spicy stuff. The cravings hit yesterday while I was getting the Rituxan, and so I got a fix of hot wings on the way home from the clinic. I guess I’m getting to the phase where I can't get fresh stuff for a while (loaded with germs, you know) so hot wings are a good thing.
When we got back to the house, the day had warmed and the spell in the prairie was broken, but now there were birds on the deck pecking through the snow at the birdseed we put out there for them and our friendly squirrel neighbor, Stubby, was back for a handout. Remember? She’s the one that bit me last spring. I can’t tell yet if she’s pregnant again, but she generally is this time of year.
I mentioned not too long ago about the run of things that had been going “aglay” around the house, with the roof, water heater etc. I could have, but didn’t at the time, mention that the power steering pump on the “Ow-di” is also going south. Now, our friend Kent, down in the westerly part of Texas, has an old Taurus with gazillions of miles on it. His power steering pump recently bit the west Texas dust, but he replaced it himself for about $30 or so. I used to enjoy working on my cars by myself, not just for the savings, but for the satisfaction. But now, I can’t fix much of anything on my cars. I can’t even get TO the power steering pump. Our local Audi dealer wants $800+ plus for a new pump. Ow-ch!
And then just a couple of days ago I was on-line looking at some reservations for Dallas to see the kids and grandkids, when the computer monitor blew. Just a little “peep” and it went dark! Now, as I mentioned to others, I don’t know why we can have a television that’s more than a decade old, doing just fine, but the damned computer monitors, just another kind of cathode ray tube, can’t last more than a couple years, even when you get a decent brand.
Like many Americans these days, we’re completely dependent on the bleeping thing. It’s especially bad when we’re housebound, but we use it everyday for lots and lots of things, communication primarily, but ordering stuff, record keeping, making reservations and more. So, we had to go out and get another monitor. Right now! I was a couple days post-Cytoxan and not feeling well, but it wasn't going to get any better. I didn’t want to go out really, but it was late in the evening so we didn’t expect crowds. We could have ordered from Office Max, since they deliver...but of course we couldn’t order on-line...no monitor.
Office Max is less than a mile from home. We went there and looked at their selection. Imagine...they were out of monitors except for some 17 inch CRTs, and we only have space on our desk for a fifteen inch CRT. Out of monitors? Man! So we went further. Circuit City wasn’t too awfully far away.
I have a problem shopping when I’m tired. This has manifested itself over the years when I’ve gone out to buy things after being up for a 24 hour shift at the hospital. I didn’t often make good decisions. I just react. Being on chemo is the same. I don’t process things just exactly right!
We got to Circuit City, went to the monitor section and looked around. Cool! Lots of neat stuff! I bought a 17 inch flat screen monitor! I even bought a four year warranty. I never buy those cheesy worthless warranties. But I didn’t even think about it much. Oh yeah, threw in a DVD of “Apocalypse Now,” too. So now I have to get a $6000 plasma TV so I can watch my DVDs the way they were supposed to be seen (hey, it’s just the chemo talking!). We went home, plugged the monitor in, and installed it despite being somewhat chemo-addled.
WOW!!!
I think back and wonder, how in the hell did we ever survive with that 13 inch B&W monitor back in years past? Speaking of which, how did we manage at all with those old computers? We had a Commodore 64, with all of 40 megs on its hard drive and, what, eight of RAM? Moving from the more recent 15 to the new 17 inch screen was a wondrous thing. Hey, you all should do it, it’ll change your life. Well, maybe. What a nice view we have now, even with a relatively cheap brand (ever heard of LiquidVideo?). Chemo brain worked out well this time.
The Cytoxan effects are very slowly abating, fortunately. No more nausea, the other end of the GI tract has slowed down (too much, actually), and although I’m still tired, I think I’m getting better. But now my hair is falling out, “gently.” Nothing in wads yet, but more and more seems to be dropping out daily. I’m debating getting it all cut off now, versus waiting for the big “fall.” I need a haircut. But I don’t want to get a haircut now and then go back in a week to have my head shaved. What to do? The next thing I have to do is to start getting blood tests every day, starting Monday morning, to see if/when we can start collecting the stem cells.
I’m finding that the costs of this treatment are increasingly expensive, far more than I realized. When I first applied for it about a year ago, and went through the appeals process with my insurer/employer to get the approval, I had estimated the cost to be about $12,000. That was a little low, it turned out. We blew that and more on trying to collect some stem cells in February 2003 but my marrow was too beat up from the previous chemotherapy to produce enough of the little guys. So we waited until the marrow recovered, so we could try again. But by then, the bad guys were back too. So, we had to try some new stuff, a procedure that is used for folks with lymphomas. It’s an “in vivo purge,” which means we’re trying to eliminate most of the bad guys with chemotherapy and then trying to force the stem cells out into circulation so we can catch a few.
This is a much more expensive procedure. I was estimating about $30,000 for this, but the cost keeps going up. It’s costing almost $10,000 a day for my Rituxan treatments alone. I had no idea! It looks like this process is going to end up costing upwards of $60,000!
Now, if that’s not bad enough, consider something that I really haven’t mentioned so far. There really is no guarantee that we’ll even get enough good stem cells. We hope to, and we expect to, but we could be drilling a dry hole with all this stuff. I find it kind of embarrassing that we’re pouring so much money into my veins. Just like you do too, I’m sure, we get letters daily saying something to the effect that, “Your $1.50 will feed this family of four for a week in Uganda,” or something. I’m starting to think, “My God, we could feed the whole freaking village for a year, maybe the whole county, with what I’m using up.” I’m not trying to affect any false modesty, or anything, for I have plenty to be modest about, but this cost just seems incredible. Especially if you go back to my “What’s the point...” letter of a couple of weeks ago. This won’t cure me, it’ll just keep alive longer so I can use up yet more resources.
I guess I’ve used up more than enough of your time, if you’ve followed this stuff all the way to the end. This brings me to something that I’ve been wanting to add to my letters for quite a while. I have to suspect that my “mail list” has grown out of proportion to the number of folks who really have any interest in this interminable tale of woe. I suspect that a number of folks have gotten on the list for some reason or another... they’re a friend, relative, a friend of a friend, or whatever, but have long since lost interest. And I think this is perfectly okay. But I have no desire to continually “spam” folks who don’t care to get uninvited e-mails every few days to every few weeks.
So, if you’ve gotten this far into this letter and still want me to assault you with my stories, just hit the “reply” button or send me a message to the effect that you want to be on the list. If I don’t hear from you, I won’t take any offense at all. I’ll just stop bothering you, okay? And I won’t assume anything about anybody, so this means I want to hear from you too, Mom! If you want to get the letters, of course.
Until I hear from you....
Dave
For those of you who were wondering about the “pop test....” Remember, I’m not working and, “An idle mind is the devil’s workshop.”
Chapter 2, Verse 8
March 8, 2004
Steady progress, I guess....
It snowed, gently, Thursday night.
It was still dark when we got up. Kathy and I had to be up early again, by our standards (and I know there are plenty of you who have no sympathy for us, but we have no kids in the house). We had to be back at the Rocky Mountain Cancer Center by eight or so for my last round of Rituxan. That means getting up before six to get ready to leave and for the almost hour long drive. Plus, getting ready to go anywhere in the morning takes longer than it used to. No longer is it just the shower, teeth, shave and deodorant routine. Now I get to dress the “exit wound” on my chest, cleaning it and scrubbing the area with antibacterial stuff, then covering it. I usually tape the tubing to my chest to try to minimize the chance of ripping it out accidentally. Then I clean and flush the tubing every morning with heparin syringes. Then, I get out two vials of Neupogen, pick out appropriate syringes and alcohol swabs, and pick a site in which to inject myself (at about $1000 a shot), rotating the place each morning. Then, I can get dressed.
I came down to eat a quick breakfast that Kathy always has prepared for me. By then the sun was up, and I saw the scene behind our home, the scene left by the spring snowfall. Every branch and every needle on the Austrian pine behind the house was whitened with the weight of its new color. The aspens, still skeletal this time of year, were coated as well, but perhaps not as beautiful. Just across our back fence, all of 20 feet or so from the house, the prairie had been dusted as well. Each stem of prairie grass and each branch of scrub brush and yucca in the green belt leaned under its transient pure color, hiding its autumn colors. A heavier coating than we sometimes see when hoarfrost covers the remaining natural grasses to our north in colder times, certainly, and just as wonderful to behold. We see photographs of such scenes in galleries and on restaurant walls, and always think they are so lovely, so beautiful, and think to ourselves thoughts that compliment the photographer/artist. But the person manning the camera is not the artist. That person merely freezes the visual poetry for others to enjoy. It’s God’s natural beauty that we are gifted with in so many ways, on a regular ever-changing schedule. And it’s all around us, in the trees, like the snow we were seeing, in the faces of our children and grandchildren and spouses, in the orange and blue Bronco sunsets we have over the Rocky Mountains. We just have to see what we’re looking at. Pictures are nice, but we can get the genuine item through our window panes.
We drove downtown to the RMCC. Got there a little early...as usual. We checked in and went to the back, where they were a little surprised to see us for some reason. So we went into a room, I got on the bed and Kathy took the chair, awaiting whatever nurse was to care for me that day. Generally someone is there within a couple of minutes. One young nurse came in; “Are you here for a bone marrow biopsy?“ she asked. I declined the invitation. We waited, waited, waited. I napped. The Cytoxan has again been causing me simultaneous fatigue and insomnia. I’d forgotten about that particular effect. I seem to be tired all the time, but have problems sleeping. After close to an hour Kelly, who had helped us before showed up and got right on things with the infusions, premeds (more than I needed, again) and flushing of lines, etc. She liked me better now that I didn’t require having an IV put in. We gathered from her comments that she didn’t realize that we were to be there early and wasn‘t scheduled to be there until later as she had stayed late the evening before to help with a procedure. But she was great, got things going and very soon we were underway with the last of the four doses of Rituxan that I’ll have to have during this treatment. We were done by noon, despite that late start.
Some of you guys may remember (I say this a lot) that when I had Cytoxan before, ‘way back in “aught 2,” I had unusual cravings, generally for spicy stuff. The cravings hit yesterday while I was getting the Rituxan, and so I got a fix of hot wings on the way home from the clinic. I guess I’m getting to the phase where I can't get fresh stuff for a while (loaded with germs, you know) so hot wings are a good thing.
When we got back to the house, the day had warmed and the spell in the prairie was broken, but now there were birds on the deck pecking through the snow at the birdseed we put out there for them and our friendly squirrel neighbor, Stubby, was back for a handout. Remember? She’s the one that bit me last spring. I can’t tell yet if she’s pregnant again, but she generally is this time of year.
I mentioned not too long ago about the run of things that had been going “aglay” around the house, with the roof, water heater etc. I could have, but didn’t at the time, mention that the power steering pump on the “Ow-di” is also going south. Now, our friend Kent, down in the westerly part of Texas, has an old Taurus with gazillions of miles on it. His power steering pump recently bit the west Texas dust, but he replaced it himself for about $30 or so. I used to enjoy working on my cars by myself, not just for the savings, but for the satisfaction. But now, I can’t fix much of anything on my cars. I can’t even get TO the power steering pump. Our local Audi dealer wants $800+ plus for a new pump. Ow-ch!
And then just a couple of days ago I was on-line looking at some reservations for Dallas to see the kids and grandkids, when the computer monitor blew. Just a little “peep” and it went dark! Now, as I mentioned to others, I don’t know why we can have a television that’s more than a decade old, doing just fine, but the damned computer monitors, just another kind of cathode ray tube, can’t last more than a couple years, even when you get a decent brand.
Like many Americans these days, we’re completely dependent on the bleeping thing. It’s especially bad when we’re housebound, but we use it everyday for lots and lots of things, communication primarily, but ordering stuff, record keeping, making reservations and more. So, we had to go out and get another monitor. Right now! I was a couple days post-Cytoxan and not feeling well, but it wasn't going to get any better. I didn’t want to go out really, but it was late in the evening so we didn’t expect crowds. We could have ordered from Office Max, since they deliver...but of course we couldn’t order on-line...no monitor.
Office Max is less than a mile from home. We went there and looked at their selection. Imagine...they were out of monitors except for some 17 inch CRTs, and we only have space on our desk for a fifteen inch CRT. Out of monitors? Man! So we went further. Circuit City wasn’t too awfully far away.
I have a problem shopping when I’m tired. This has manifested itself over the years when I’ve gone out to buy things after being up for a 24 hour shift at the hospital. I didn’t often make good decisions. I just react. Being on chemo is the same. I don’t process things just exactly right!
We got to Circuit City, went to the monitor section and looked around. Cool! Lots of neat stuff! I bought a 17 inch flat screen monitor! I even bought a four year warranty. I never buy those cheesy worthless warranties. But I didn’t even think about it much. Oh yeah, threw in a DVD of “Apocalypse Now,” too. So now I have to get a $6000 plasma TV so I can watch my DVDs the way they were supposed to be seen (hey, it’s just the chemo talking!). We went home, plugged the monitor in, and installed it despite being somewhat chemo-addled.
WOW!!!
I think back and wonder, how in the hell did we ever survive with that 13 inch B&W monitor back in years past? Speaking of which, how did we manage at all with those old computers? We had a Commodore 64, with all of 40 megs on its hard drive and, what, eight of RAM? Moving from the more recent 15 to the new 17 inch screen was a wondrous thing. Hey, you all should do it, it’ll change your life. Well, maybe. What a nice view we have now, even with a relatively cheap brand (ever heard of LiquidVideo?). Chemo brain worked out well this time.
The Cytoxan effects are very slowly abating, fortunately. No more nausea, the other end of the GI tract has slowed down (too much, actually), and although I’m still tired, I think I’m getting better. But now my hair is falling out, “gently.” Nothing in wads yet, but more and more seems to be dropping out daily. I’m debating getting it all cut off now, versus waiting for the big “fall.” I need a haircut. But I don’t want to get a haircut now and then go back in a week to have my head shaved. What to do? The next thing I have to do is to start getting blood tests every day, starting Monday morning, to see if/when we can start collecting the stem cells.
I’m finding that the costs of this treatment are increasingly expensive, far more than I realized. When I first applied for it about a year ago, and went through the appeals process with my insurer/employer to get the approval, I had estimated the cost to be about $12,000. That was a little low, it turned out. We blew that and more on trying to collect some stem cells in February 2003 but my marrow was too beat up from the previous chemotherapy to produce enough of the little guys. So we waited until the marrow recovered, so we could try again. But by then, the bad guys were back too. So, we had to try some new stuff, a procedure that is used for folks with lymphomas. It’s an “in vivo purge,” which means we’re trying to eliminate most of the bad guys with chemotherapy and then trying to force the stem cells out into circulation so we can catch a few.
This is a much more expensive procedure. I was estimating about $30,000 for this, but the cost keeps going up. It’s costing almost $10,000 a day for my Rituxan treatments alone. I had no idea! It looks like this process is going to end up costing upwards of $60,000!
Now, if that’s not bad enough, consider something that I really haven’t mentioned so far. There really is no guarantee that we’ll even get enough good stem cells. We hope to, and we expect to, but we could be drilling a dry hole with all this stuff. I find it kind of embarrassing that we’re pouring so much money into my veins. Just like you do too, I’m sure, we get letters daily saying something to the effect that, “Your $1.50 will feed this family of four for a week in Uganda,” or something. I’m starting to think, “My God, we could feed the whole freaking village for a year, maybe the whole county, with what I’m using up.” I’m not trying to affect any false modesty, or anything, for I have plenty to be modest about, but this cost just seems incredible. Especially if you go back to my “What’s the point...” letter of a couple of weeks ago. This won’t cure me, it’ll just keep alive longer so I can use up yet more resources.
I guess I’ve used up more than enough of your time, if you’ve followed this stuff all the way to the end. This brings me to something that I’ve been wanting to add to my letters for quite a while. I have to suspect that my “mail list” has grown out of proportion to the number of folks who really have any interest in this interminable tale of woe. I suspect that a number of folks have gotten on the list for some reason or another... they’re a friend, relative, a friend of a friend, or whatever, but have long since lost interest. And I think this is perfectly okay. But I have no desire to continually “spam” folks who don’t care to get uninvited e-mails every few days to every few weeks.
So, if you’ve gotten this far into this letter and still want me to assault you with my stories, just hit the “reply” button or send me a message to the effect that you want to be on the list. If I don’t hear from you, I won’t take any offense at all. I’ll just stop bothering you, okay? And I won’t assume anything about anybody, so this means I want to hear from you too, Mom! If you want to get the letters, of course.
Until I hear from you....
Dave
For those of you who were wondering about the “pop test....” Remember, I’m not working and, “An idle mind is the devil’s workshop.”
Friday, March 5, 2004
The DGA Pop Quiz
Dave’s Great Adventure, Book 2
Special Continuing Education Edition
Pop Quiz
March 5, 2004
Alright class, put away all those detailed, copious, carefully printed out notes. Now’s the time to see if you’ve been paying attention. Yeah, you in the back...I know I didn’t announce that there would be a pop test. If I had, it wouldn’t be a pop test, now would it? Sit down! You have thirty minutes. Time starts now!
1.) The tube in my chest is:
a) Too big
b) Too small
c) Just right
d) The size of a Burger King soda straw
e) a and d
2.) The phrase “gang aft aglay” refers to:
a) Mutineers playing at the back of the ship.
b) German for “I went back to town.”
c) The Jets and the Sharks (you know, the gangs...in West Side Story...remember?) are at it again.
d) The fact that the plans of both humanoids and murine species often go awry.
3.) When you hear “murine,” you think:
a) “Gets the red out!”
b) Somebody can’t say Marine correctly.
c) Ships and water
d) Of a small species of mammal whose plans gang aft aglay.
4.) Complete the sentence: “Omigod, that’s not _____________!
a) Ollie North
b) an Osterizer
c) an Optimizer
d) an Optiflow
5.) RSV stands for:
a) Respondez S’il Vous (Plait)
b) Really strong vermin!
c) Respiratory Something-or-other Virus
d) Revised Standard Version
6.) The things in life that we have always with us are:
a) Death
b) Taxes
c) Home Maintenance
d) Milk going bad in the fridge
e) Most of the above
7.) The chair junkyard is:
a) a place in Africa where old chairs go to die.
b) American Furniture Warehouse
c) where ever our youngest happens to live
d) a corner of our basement
8.) The essay “Death in the Open” by Lewis Thomas, MD, first appeared in:
a) Sniper Magazine
b) Guns and Ammo
c) The American Coroner Magazine
d) New England Journal of Medicine
9.) DGA stands for:
a) Damned Good Ale
b) Deaf Golf Association
c) Dave Gets Antibodies
d) Some guy’s Adventures With Leukemia
10.) RSV is usually found in:
a) murine species
b) young children
c) penguins
d) middle aged male doctors
11.) Robert Burns:
a) The Garbage In The Backyard Instead Of At The Dump!
b) works at RMCC
c) has RSV
d) was a Scottish poet who never learned to write in proper English
12.) Rituximab:
a) is slang for “The right Tuxedo, maybe” in parts of New York
b) Latin for “Two cheeseburgers to go.”
c) is in the lyrics of “Innagaddavida, baby”
d) is a murine monoclonal antibody, whatever that is!
13.) Doc Jamboz said to me, “Don’t cough when...”
a) I’m checking your prostate
b) I’m checking your hernia
c) I’m going for your jugular
d) you’re trying to pee or you'll get your pants wet!
e) all of the above at the same time
14.) El Tejado:
a) means “Red Tile Roof”
b) sells great cheeseburgers and fries
c) has wonderful chilaquiles
d) all of the above
15.) What’s the point...
a) the grass will just grow again!
b) my hair will still need to be cut again next month anyway
c) the laundry hamper will be full again in a week, won’t it?
d) all of the above
16.) Lewis Carroll was such a good writer because:
a) he got hit in the head with a large rock and suffered brain damage as a child
b) one pill made him larger, and one pill made him small, and the pills that mother gave him, didn’t do anything at all
c) Go ask Alice, when she was just small....
d) he had epilepsy and resultant hypergraphia, one presumes
17.) The person most to blame for this test is:
a) the boy who hit me in the head with a large rock when I was eight and caused my hypergraphia
b) the doc who put me on all those migraine medications and gave me hypergraphia
c) the doctor who delivered me and caused my birth injury, making me a manic depressive
d) Joan, who suggested I keep a journal of this adventure
18.) The condition known as hypergraphia:
a) refers to engineers who are always plotting X and Y on that funny lined paper
b) people who sign really big autographs
c) very large etchings done with an Etch-A-Sketch
d) a made-up medical condition describing people who write compulsively, so that other people will realize that I, I mean they, really have a problem and they really aren’t crazy, and people should treat them with sympathy instead of with disdain, because they can’t help it. And it was caused by that kid who hit me in the head with a big rock when I was just eight! It’s not my fault!
19.) The tube hanging out of my chest is:
a) a pain in the neck
b) a pain in the chest
c) a pain in the ass
d) all of the above
20.) Stem cells are:
a) small groups of Al Quaida members who are dyslexic baseball fans and spell “Mets” backwards, because they got hit in the head with a rock when they were eight years old!
b) amoeboid cells found in pipe stems that, when inhaled, cause hypergraphia
c) jails for bad stems
d) Big Momma blood cells that grow all the other blood cells
21.) Which famous philosopher asked the question, “Why does God cause things like tornadoes...and train wrecks?”
a) Immanuel Kant
b) Timothy Leary
c) Diogenes
d) Crash Test Dummies
22.) What is Mesna?
a) a bunch of smarty pants folks who think they’re smarter than the rest of us just ‘cause they’ve got high IQs
b) Mars Explorer Sends News Aloft
c) a drug to protect against the cytological grim reaper
d) an ingredient in Big Mac’s special sauce
23.) A Kaiserschnitt is:
a) a cold cut like a piece of bologna
b) a long roll for a sub sandwich
c)a German word for C-section
d) a bit of Kaiser excrement
24.) The warranty on our water heater was:
a) 20 years
b) 12 years
c) 16 years
d) six months less than the time it took to rust out
25.) The City Grille:
a) has burgers with guacamole-picante-cilantro blue cheese spread
b) is well-known for its gorgonzola wine cheese sauce
c) is in “The City”
d) has plain ole burgers
e) c and d
26.) Health is:
a) the absence of disease
b) a good thing
c) merely the slowest possible way that one can die
d) all the above
27.) Cytoxan side-effects include all except:
a) pancytopenia
b) hemorrhagic cystitis
c) alopecia
d) an intense itching in the armpits which really tickles when you try to wash there in the morning
28.) “We are too soon old, and too late _______:”
a) wealthy
b) wise
c) wrinkled
d) pregnant
29.) The tube hanging out of my chest looks like a(n) inverted:
a) Y
b) M
c) C
d) A
e) they have everything for you men to enjoy, you can hang out with all the boys ....
30.) More than anything else, I hate:
a) having my back scratched
b) eating frozen custard at the place called CJ’s
c) vomiting
d) holding Kathy’s hand
EXTRA CREDIT: Without looking at your notes, or doing a Google search, correctly spell what RSV stands for:___________ .
Now, I have applied to The Health Institute Science Inquiry Service for Certifying Really Awful Posttests and I’m proud to say that THIS IS CRAP has certified the DGA series for 3 minutes and 16 seconds of Continuing Medical Education, or 0.05 units of Continuing Nursing Education. It has also been approved for 4 seconds of Continuing Legal Education. If you are an engineer, professor, hooker, journalist, teacher, real estate agent, do nails for a living or you run a B&B, apply to your local licensing board for approval for your continuing education. All costs are completely tax deductible, if you (please) send me any money.
This will be a self-graded exercise (because I trust you all).
ANSWERS:
1) e 6) e 11) d 16) d 21) d 26) d
2) d 7) d 12) d 17) d 22) c 27) d
3) d 8) d 13) c 18) d 23) c 28) b
4) d 9) d 14) d 19) d 24) d 29) a
5) c 10)b 15) d 20) d 25) d 30) c
Extra Credit Answer: Respiratory Syncytial Virus
Special Continuing Education Edition
Pop Quiz
March 5, 2004
Alright class, put away all those detailed, copious, carefully printed out notes. Now’s the time to see if you’ve been paying attention. Yeah, you in the back...I know I didn’t announce that there would be a pop test. If I had, it wouldn’t be a pop test, now would it? Sit down! You have thirty minutes. Time starts now!
1.) The tube in my chest is:
a) Too big
b) Too small
c) Just right
d) The size of a Burger King soda straw
e) a and d
2.) The phrase “gang aft aglay” refers to:
a) Mutineers playing at the back of the ship.
b) German for “I went back to town.”
c) The Jets and the Sharks (you know, the gangs...in West Side Story...remember?) are at it again.
d) The fact that the plans of both humanoids and murine species often go awry.
3.) When you hear “murine,” you think:
a) “Gets the red out!”
b) Somebody can’t say Marine correctly.
c) Ships and water
d) Of a small species of mammal whose plans gang aft aglay.
4.) Complete the sentence: “Omigod, that’s not _____________!
a) Ollie North
b) an Osterizer
c) an Optimizer
d) an Optiflow
5.) RSV stands for:
a) Respondez S’il Vous (Plait)
b) Really strong vermin!
c) Respiratory Something-or-other Virus
d) Revised Standard Version
6.) The things in life that we have always with us are:
a) Death
b) Taxes
c) Home Maintenance
d) Milk going bad in the fridge
e) Most of the above
7.) The chair junkyard is:
a) a place in Africa where old chairs go to die.
b) American Furniture Warehouse
c) where ever our youngest happens to live
d) a corner of our basement
8.) The essay “Death in the Open” by Lewis Thomas, MD, first appeared in:
a) Sniper Magazine
b) Guns and Ammo
c) The American Coroner Magazine
d) New England Journal of Medicine
9.) DGA stands for:
a) Damned Good Ale
b) Deaf Golf Association
c) Dave Gets Antibodies
d) Some guy’s Adventures With Leukemia
10.) RSV is usually found in:
a) murine species
b) young children
c) penguins
d) middle aged male doctors
11.) Robert Burns:
a) The Garbage In The Backyard Instead Of At The Dump!
b) works at RMCC
c) has RSV
d) was a Scottish poet who never learned to write in proper English
12.) Rituximab:
a) is slang for “The right Tuxedo, maybe” in parts of New York
b) Latin for “Two cheeseburgers to go.”
c) is in the lyrics of “Innagaddavida, baby”
d) is a murine monoclonal antibody, whatever that is!
13.) Doc Jamboz said to me, “Don’t cough when...”
a) I’m checking your prostate
b) I’m checking your hernia
c) I’m going for your jugular
d) you’re trying to pee or you'll get your pants wet!
e) all of the above at the same time
14.) El Tejado:
a) means “Red Tile Roof”
b) sells great cheeseburgers and fries
c) has wonderful chilaquiles
d) all of the above
15.) What’s the point...
a) the grass will just grow again!
b) my hair will still need to be cut again next month anyway
c) the laundry hamper will be full again in a week, won’t it?
d) all of the above
16.) Lewis Carroll was such a good writer because:
a) he got hit in the head with a large rock and suffered brain damage as a child
b) one pill made him larger, and one pill made him small, and the pills that mother gave him, didn’t do anything at all
c) Go ask Alice, when she was just small....
d) he had epilepsy and resultant hypergraphia, one presumes
17.) The person most to blame for this test is:
a) the boy who hit me in the head with a large rock when I was eight and caused my hypergraphia
b) the doc who put me on all those migraine medications and gave me hypergraphia
c) the doctor who delivered me and caused my birth injury, making me a manic depressive
d) Joan, who suggested I keep a journal of this adventure
18.) The condition known as hypergraphia:
a) refers to engineers who are always plotting X and Y on that funny lined paper
b) people who sign really big autographs
c) very large etchings done with an Etch-A-Sketch
d) a made-up medical condition describing people who write compulsively, so that other people will realize that I, I mean they, really have a problem and they really aren’t crazy, and people should treat them with sympathy instead of with disdain, because they can’t help it. And it was caused by that kid who hit me in the head with a big rock when I was just eight! It’s not my fault!
19.) The tube hanging out of my chest is:
a) a pain in the neck
b) a pain in the chest
c) a pain in the ass
d) all of the above
20.) Stem cells are:
a) small groups of Al Quaida members who are dyslexic baseball fans and spell “Mets” backwards, because they got hit in the head with a rock when they were eight years old!
b) amoeboid cells found in pipe stems that, when inhaled, cause hypergraphia
c) jails for bad stems
d) Big Momma blood cells that grow all the other blood cells
21.) Which famous philosopher asked the question, “Why does God cause things like tornadoes...and train wrecks?”
a) Immanuel Kant
b) Timothy Leary
c) Diogenes
d) Crash Test Dummies
22.) What is Mesna?
a) a bunch of smarty pants folks who think they’re smarter than the rest of us just ‘cause they’ve got high IQs
b) Mars Explorer Sends News Aloft
c) a drug to protect against the cytological grim reaper
d) an ingredient in Big Mac’s special sauce
23.) A Kaiserschnitt is:
a) a cold cut like a piece of bologna
b) a long roll for a sub sandwich
c)a German word for C-section
d) a bit of Kaiser excrement
24.) The warranty on our water heater was:
a) 20 years
b) 12 years
c) 16 years
d) six months less than the time it took to rust out
25.) The City Grille:
a) has burgers with guacamole-picante-cilantro blue cheese spread
b) is well-known for its gorgonzola wine cheese sauce
c) is in “The City”
d) has plain ole burgers
e) c and d
26.) Health is:
a) the absence of disease
b) a good thing
c) merely the slowest possible way that one can die
d) all the above
27.) Cytoxan side-effects include all except:
a) pancytopenia
b) hemorrhagic cystitis
c) alopecia
d) an intense itching in the armpits which really tickles when you try to wash there in the morning
28.) “We are too soon old, and too late _______:”
a) wealthy
b) wise
c) wrinkled
d) pregnant
29.) The tube hanging out of my chest looks like a(n) inverted:
a) Y
b) M
c) C
d) A
e) they have everything for you men to enjoy, you can hang out with all the boys ....
30.) More than anything else, I hate:
a) having my back scratched
b) eating frozen custard at the place called CJ’s
c) vomiting
d) holding Kathy’s hand
EXTRA CREDIT: Without looking at your notes, or doing a Google search, correctly spell what RSV stands for:___________ .
Now, I have applied to The Health Institute Science Inquiry Service for Certifying Really Awful Posttests and I’m proud to say that THIS IS CRAP has certified the DGA series for 3 minutes and 16 seconds of Continuing Medical Education, or 0.05 units of Continuing Nursing Education. It has also been approved for 4 seconds of Continuing Legal Education. If you are an engineer, professor, hooker, journalist, teacher, real estate agent, do nails for a living or you run a B&B, apply to your local licensing board for approval for your continuing education. All costs are completely tax deductible, if you (please) send me any money.
This will be a self-graded exercise (because I trust you all).
ANSWERS:
1) e 6) e 11) d 16) d 21) d 26) d
2) d 7) d 12) d 17) d 22) c 27) d
3) d 8) d 13) c 18) d 23) c 28) b
4) d 9) d 14) d 19) d 24) d 29) a
5) c 10)b 15) d 20) d 25) d 30) c
Extra Credit Answer: Respiratory Syncytial Virus
Wednesday, March 3, 2004
Finally, the Cytoxan and Associated Adventures!
Dave’s Great Adventure, Book 2
Chapter 2, Verse 7
March 3, 2004
Cytoxan, ... finally.
March 1st came around, and we went back to the clinic. My chest was feeling fine. It was the day I’d been anxiously awaiting and at the same time, in some ways, dreading. I needed to get past this date to get anything done, but I expected some bad days after they give me the Cytoxan. Remember what that is? Cytoxan = “Cyto”= cell and “toxin”= poison. They’re going to give me cell killer! As our daughter asked, “Why are you so anxious to get that stuff that’s going to make you feel like crap?”
Kathy I went in, early, of course, and checked in. At least we didn’t beat the staff in this time. Our nurse was Poppy, a real nice gal in her early thirties who exuded the air of someone who knew exactly what she was doing. I appreciated that. She didn’t even wait for the doc to come around and check me out, so well was I doing as compared to the previous Friday when we had met and I was still coughing and wheezing. She told me what we were going to do, gave me a list of Cytoxan side effects to look over (sinus congestion, nausea and vomiting, delayed nausea and vomiting, esophagitis, diarrhea, alopecia [baldness], pancytopenia [loss of adequate blood cells off all types, needing transfusions, etc.], hemorrhagic cystitis [bloody urine], cardiotoxicity which may decrease the heart's ability to pump blood, reproductive dysfunction [no longer a worry around these parts], and pulmonary fibrosis, which is a disease which has killed two of my cousins on my Mom's side. Yee Hah! Let the good times roll!) and started.
Let me spend a moment telling you about how much Cytoxan they’re giving me this time. Long time readers of this series may remember that I have had this drug before, when I was getting my first rounds of chemotherapy from July to October 2002, and that I was wiped out for days with “the fuzzies,” etc., when I couldn‘t think, do much, and just lay (or lie?) around the house for days. Well, back then, they were giving me 750mg (3/4 of a gram) a day, for three days in a row, with a couple of other meds too. Now they're giving me almost 6 grams of the stuff all at once, about eight times as much as I have ever gotten in a day, and about three times as much as I’ve ever gotten in any one week before. Man, they’re really going to pound away at my marrow this time!
But before they started it, they gave me another drug that I hadn’t had before. They infused some Mesna, a “cytoprotective” drug. I don’t know how it works, but it’s supposed to protect my vital organs from the Cytoxan somehow. That could be a good thing, protecting my vital organs before we loose the Cytological Grim Reaper, swinging a very large scythe, cutting down the good and bad guys all at once.
Then it started. It’s looks so benign. Many of the poisons we give to people have nasty, ominous colors. Yellows, reds, off-colors. Cytoxan, just like the Rituxan, the saline, the steroids and the Anzemet, were all just clear fluids. You couldn’t tell one from the other in the various tubes which were draining into my chest. The infusion took two hours. I was feeling bad before it was over...”woozy,” I told Kathy. I was unsteady when I got up to go to the bathroom and I couldn’t focus well. But, I didn’t feel at all nauseated. I was happy about that because I HATE to throw up! I was getting a headache, though, supposedly from the Anzemet (the antinausea medication). After the infusion came two more hours of hydration to help keep my kidneys flushed and minimize damage to them.
Now, initially, I was told I would be admitted to the hospital overnight to continue the hydration for 24 hours. Then, that was changed to having a home health nurse come out to manage IV’s for me at home. Then, that was changed to me going home with what is actually a backpack with a pump, batteries, and bags of fluids to use at home. Hey, don’t you love HMOs? However, I have to admit that I liked the backpack idea better than going to the hospital or having a nurse come to the house. The latter would have required a major house cleaning!
So they hooked me up to this backpack, which also has a handle so you can carry it like a briefcase if you want to, which I did, and put in the biggest bag of IV fluids I think I’ve ever seen, 2 1/2 liters. It looked more like an enema bag or something. And that was just the first of two IV bags we took home with us. The pump inside pumped the fluids out of the bag and into the tubing and then up under my shirt into my chest. A bit awkward, but manageable. The backpack also had another little pump, a little round spring loaded pump about the size of a Big Mac which contained more Mesna, to keep an infusion of it going during the night too. I liked that too, but wondered, “What if the spring breaks, or gets jammed, or something?”
We got home okay, and I headed straight for the couch. Kathy fixed a small meal, but I couldn’t each much, not from nausea but just from fatigue. I finally went upstairs to try to get some sleep at about nine. I wasn’t being much fun anyway!
Sleeping presented a problem. I was attached to a backpack by about five feet of tubing which was attached to the right side of my chest. We decided my best bet was to try to sleep in the recliner for the night. That would also put me much closer to the bathroom if I were to have problems during the night. So I did. But soon, the pump started beeping at me. Some kind of code I didn’t understand. “Beep, Beep Beep.” Then, “Beep Beep, Beep.” Then, “Beep Beep Beep, Beep.” I dragged myself into the bathroom, turned on the light, opened the backpack and looked for error messages or something. I couldn’t find a problem, so I put the damned thing back together (really an awkward thing to do when you're tired and inexperienced with the mechanism). I crawled back in the recliner and tried to get my headache to go away. I didn't know what medications I could safely take with the Cytoxan on board so I was being more cautious with meds than I usually am.
Things really broke loose at about midnight! The pump began making alarming beeps continuously. I again got up, went into the bathroom and turned on the light. I sat on the floor and disassembled the backpack to get at the pump. This time it said the battery was low. Well, they had provided about a half dozen more batteries with the pack, so I proceeded to replace the bad one, not too much of a problem. But when I got it replaced, the pump then said my fluids were low. Sure enough, the huge 2 1/2 liter bag was down to about 50cc. Problem! The replacement bag was downstairs and I had the backpack and tubing all in pieces. I called to Kathy, several times, actually, as she was sound asleep. But when she woke, she saw me in the bathroom with pump and bag parts scattered all round me and thought disaster had struck and she came running. I told her nothing serious was happening, but I needed the second bag brought up. We were then sitting on the floor, trying to figure out how to get the second bag threaded through the pump when the next problem hit.
I had to throw up. Suddenly, without warning, in less time than it has taken you to read this, I had to throw up. But, I had the replacement bag of fluids in my hand, the bag was opened with the pump on the floor, still attached to my chest by my tubing, and the backpack was in front of me, all of it interconnected. And all this stuff was between me and the toilet! I madly clambered over all the bags, tubing and equipment, towards the toilet, dragging all the stuff by my chest tubing. Ouch! I almost made it. Actually I made it for most of the event, but I couldn’t crawl fast enough to reach the toilet for the first “burst,” if you will. And, there, I vomited from my toes. And this kept on, until there was nothing left. (I’ll spare you any more vomit details)
When it was over, Kathy helped me clean up, both myself and the floor, but we still hadn’t replaced the bag of fluids. With a little effort, through chemo impaired and sleep deprived minds, we finally got it figured out and got me back into the recliner. The rest of the night was, thankfully, uneventful. Not restful, but uneventful, as Kathy and I both kept listening for the quiet “grunch-grunch” sound of the pump every couple of seconds, to make sure it was working, and to make sure we didn’t sleep through any frantic beeping!
We had to be back at the clinic the next morning by nine, so we got up, very slowly, at seven. On the way back downtown the battery needed to be replaced again; no problem this time. When I got there, Poppy looked at me and said, “Bad night, huh?” She could tell. I was weighed, and had gained nine pounds overnight; the effect of steroids and continuous fluid infusions. They put me in a room, gave me some Ativan (the sleep stuff) and I took a nap for an hour or so. Meanwhile they disconnected all the tubing, flushed my lines and cleaned up the insertion site. After a while, we went home and Kathy and I both took a nap. I’m happy to tell you that there has been no more nausea, though the other end of my digestive tract has begun to act up, as I was warned it might. I’ve been hitting the Pepto and Imodium quite a bit.
And now it’s Wednesday. I’m extremely tired. And this is supposed to be a “good” day. I’m not supposed to get wiped out, according to my nurses, until the next day or two. Last night, though I wasn’t drinking anything during the night, I had to get up every couple of hours to pee, still getting rid of all the fluids I had accumulated during the previous couple of days. So this morning, I got up, ate breakfast, and went back to the couch to lay or lie down for the rest of the morning. (Our friend Kent, from Lubbock provided me with this rule about laying and lying: “For the record: I (do) lie down; I lay down; l have/had lain down. I (do) lay the frammis on the portico; I laid the frammis on the portico; I have/had laid the frammis on the portico. Your usage in your e-mail was correct. Thus spake Zarathustra, the arbiter of all English usage.” The “frammis” is an old, long running joke about an imaginary home-building part).
After the Cytoxan, a lot of things are going to happen to me, and I’m not likely to be a happy person for a while. When I had the Cytoxan in the past, many of you may remember me writing about having the “fuzzies,” times when I really couldn’t think well, read, type, etc. All I wanted to do, for days at a time, was lie around the house and sleep. Since I’m going to be getting a big walloping dose this time, it’s likely to be worse and last longer. Plus, I was lucky enough to escape nausea last time. I wasn’t so lucky this time. My doc said I may not even have any nausea, and then gave me enough nausea pills, at $10 each for three weeks! Now, what’s that telling you?
Then, the drugs are going to severely depress my white cell counts, hopefully taking all the “bad guys” with them. But, that’s going to make me very susceptible to infections, even from the germs within my body. I’ll have to be on antibiotics again for at least a couple of weeks or so. During that time, Kathy and I are going to “hibernate” within the house. I’ll not be going out where I might be exposed to anyone who might be sick, and Kathy, likewise, will be staying in so as not to bring any new germs into the house. Kathy stocked up the pantry just a few days ago so she wouldn’t have to go out much during that time.
And, as if that's not enough, I’ll have to start giving myself shots of a drug, the Neupogen some of you may remember, to stimulate the growth of my white cells again. I’ll have to do that everyday. I did that last year when we first tried to collect my stem cells, and the side effects weren’t too bad. I did have chest pain, in my sternum, and felt weakened, but not too extremely so. But, now that I presumably have some stem cells that can replicate, I will likely get the side effects, which can be bone pain, flu-like feelings, low grade fever, etc.
So, I’m likely to simultaneously have nausea, bone pain, weakness, “the fuzzies,” loss of appetite, and a significantly depressed immune system which will be susceptible to lots of other infections for a week or so. Does that sound like a good time? Of course, it’s not supposed to be a good time, and lots of you out there, and millions of other folks in the world have gone through much worse times, for longer periods of times, too.
I’ve decided that after we’ve finished the stem cell collection and it’s safe for me to get out, and I get some strength back, I’m going to take Kathy to a B&B for some R&R for a few days. We could rest in the house, to be sure, but that wouldn’t be a rest for Kathy, who would still be waiting on me and taking care of all the chores. She never lets me do much of anything while I’m recovering from chemotherapy. She spoils me! If I’m strong enough to travel, we’re planning to go back to the wonderful Alaska Wolfhouse B&B in Juneau for a few days, the place where we stayed last summer, with Phil and Clovis Dennis (who write that they have had their own interesting experiences with leaking water heaters). They are wonderful and hospitable folks and we had hoped to be able to visit with them again in the future, but they’re retiring from the business next summer. So, we need to go sooner rather than later. And this will provide a perfect reason, presuming I’m strong enough and my white cells are adequate for me to travel. Phil is a retired psychologist and is a lot of fun to talk to. He says a lot of folks tell him that a stay in the Wolfhouse provides Bed, Breakfast and Counseling! Another sub-text to this trip is that I want to see the Northern Lights at some time in my life. I wasn’t able to see any Southern Lights during our recent sojourn into the Antarctic, but March is supposed to be a good time in the northern hemisphere. Maybe we’ll be able to see some interesting things in the sky.
That's more than enough for now. I’ll close this edition, but let you know that something special is coming next time, whenever that is (depends on my mental state!).
Until then,
Dave
Chapter 2, Verse 7
March 3, 2004
Cytoxan, ... finally.
March 1st came around, and we went back to the clinic. My chest was feeling fine. It was the day I’d been anxiously awaiting and at the same time, in some ways, dreading. I needed to get past this date to get anything done, but I expected some bad days after they give me the Cytoxan. Remember what that is? Cytoxan = “Cyto”= cell and “toxin”= poison. They’re going to give me cell killer! As our daughter asked, “Why are you so anxious to get that stuff that’s going to make you feel like crap?”
Kathy I went in, early, of course, and checked in. At least we didn’t beat the staff in this time. Our nurse was Poppy, a real nice gal in her early thirties who exuded the air of someone who knew exactly what she was doing. I appreciated that. She didn’t even wait for the doc to come around and check me out, so well was I doing as compared to the previous Friday when we had met and I was still coughing and wheezing. She told me what we were going to do, gave me a list of Cytoxan side effects to look over (sinus congestion, nausea and vomiting, delayed nausea and vomiting, esophagitis, diarrhea, alopecia [baldness], pancytopenia [loss of adequate blood cells off all types, needing transfusions, etc.], hemorrhagic cystitis [bloody urine], cardiotoxicity which may decrease the heart's ability to pump blood, reproductive dysfunction [no longer a worry around these parts], and pulmonary fibrosis, which is a disease which has killed two of my cousins on my Mom's side. Yee Hah! Let the good times roll!) and started.
Let me spend a moment telling you about how much Cytoxan they’re giving me this time. Long time readers of this series may remember that I have had this drug before, when I was getting my first rounds of chemotherapy from July to October 2002, and that I was wiped out for days with “the fuzzies,” etc., when I couldn‘t think, do much, and just lay (or lie?) around the house for days. Well, back then, they were giving me 750mg (3/4 of a gram) a day, for three days in a row, with a couple of other meds too. Now they're giving me almost 6 grams of the stuff all at once, about eight times as much as I have ever gotten in a day, and about three times as much as I’ve ever gotten in any one week before. Man, they’re really going to pound away at my marrow this time!
But before they started it, they gave me another drug that I hadn’t had before. They infused some Mesna, a “cytoprotective” drug. I don’t know how it works, but it’s supposed to protect my vital organs from the Cytoxan somehow. That could be a good thing, protecting my vital organs before we loose the Cytological Grim Reaper, swinging a very large scythe, cutting down the good and bad guys all at once.
Then it started. It’s looks so benign. Many of the poisons we give to people have nasty, ominous colors. Yellows, reds, off-colors. Cytoxan, just like the Rituxan, the saline, the steroids and the Anzemet, were all just clear fluids. You couldn’t tell one from the other in the various tubes which were draining into my chest. The infusion took two hours. I was feeling bad before it was over...”woozy,” I told Kathy. I was unsteady when I got up to go to the bathroom and I couldn’t focus well. But, I didn’t feel at all nauseated. I was happy about that because I HATE to throw up! I was getting a headache, though, supposedly from the Anzemet (the antinausea medication). After the infusion came two more hours of hydration to help keep my kidneys flushed and minimize damage to them.
Now, initially, I was told I would be admitted to the hospital overnight to continue the hydration for 24 hours. Then, that was changed to having a home health nurse come out to manage IV’s for me at home. Then, that was changed to me going home with what is actually a backpack with a pump, batteries, and bags of fluids to use at home. Hey, don’t you love HMOs? However, I have to admit that I liked the backpack idea better than going to the hospital or having a nurse come to the house. The latter would have required a major house cleaning!
So they hooked me up to this backpack, which also has a handle so you can carry it like a briefcase if you want to, which I did, and put in the biggest bag of IV fluids I think I’ve ever seen, 2 1/2 liters. It looked more like an enema bag or something. And that was just the first of two IV bags we took home with us. The pump inside pumped the fluids out of the bag and into the tubing and then up under my shirt into my chest. A bit awkward, but manageable. The backpack also had another little pump, a little round spring loaded pump about the size of a Big Mac which contained more Mesna, to keep an infusion of it going during the night too. I liked that too, but wondered, “What if the spring breaks, or gets jammed, or something?”
We got home okay, and I headed straight for the couch. Kathy fixed a small meal, but I couldn’t each much, not from nausea but just from fatigue. I finally went upstairs to try to get some sleep at about nine. I wasn’t being much fun anyway!
Sleeping presented a problem. I was attached to a backpack by about five feet of tubing which was attached to the right side of my chest. We decided my best bet was to try to sleep in the recliner for the night. That would also put me much closer to the bathroom if I were to have problems during the night. So I did. But soon, the pump started beeping at me. Some kind of code I didn’t understand. “Beep, Beep Beep.” Then, “Beep Beep, Beep.” Then, “Beep Beep Beep, Beep.” I dragged myself into the bathroom, turned on the light, opened the backpack and looked for error messages or something. I couldn’t find a problem, so I put the damned thing back together (really an awkward thing to do when you're tired and inexperienced with the mechanism). I crawled back in the recliner and tried to get my headache to go away. I didn't know what medications I could safely take with the Cytoxan on board so I was being more cautious with meds than I usually am.
Things really broke loose at about midnight! The pump began making alarming beeps continuously. I again got up, went into the bathroom and turned on the light. I sat on the floor and disassembled the backpack to get at the pump. This time it said the battery was low. Well, they had provided about a half dozen more batteries with the pack, so I proceeded to replace the bad one, not too much of a problem. But when I got it replaced, the pump then said my fluids were low. Sure enough, the huge 2 1/2 liter bag was down to about 50cc. Problem! The replacement bag was downstairs and I had the backpack and tubing all in pieces. I called to Kathy, several times, actually, as she was sound asleep. But when she woke, she saw me in the bathroom with pump and bag parts scattered all round me and thought disaster had struck and she came running. I told her nothing serious was happening, but I needed the second bag brought up. We were then sitting on the floor, trying to figure out how to get the second bag threaded through the pump when the next problem hit.
I had to throw up. Suddenly, without warning, in less time than it has taken you to read this, I had to throw up. But, I had the replacement bag of fluids in my hand, the bag was opened with the pump on the floor, still attached to my chest by my tubing, and the backpack was in front of me, all of it interconnected. And all this stuff was between me and the toilet! I madly clambered over all the bags, tubing and equipment, towards the toilet, dragging all the stuff by my chest tubing. Ouch! I almost made it. Actually I made it for most of the event, but I couldn’t crawl fast enough to reach the toilet for the first “burst,” if you will. And, there, I vomited from my toes. And this kept on, until there was nothing left. (I’ll spare you any more vomit details)
When it was over, Kathy helped me clean up, both myself and the floor, but we still hadn’t replaced the bag of fluids. With a little effort, through chemo impaired and sleep deprived minds, we finally got it figured out and got me back into the recliner. The rest of the night was, thankfully, uneventful. Not restful, but uneventful, as Kathy and I both kept listening for the quiet “grunch-grunch” sound of the pump every couple of seconds, to make sure it was working, and to make sure we didn’t sleep through any frantic beeping!
We had to be back at the clinic the next morning by nine, so we got up, very slowly, at seven. On the way back downtown the battery needed to be replaced again; no problem this time. When I got there, Poppy looked at me and said, “Bad night, huh?” She could tell. I was weighed, and had gained nine pounds overnight; the effect of steroids and continuous fluid infusions. They put me in a room, gave me some Ativan (the sleep stuff) and I took a nap for an hour or so. Meanwhile they disconnected all the tubing, flushed my lines and cleaned up the insertion site. After a while, we went home and Kathy and I both took a nap. I’m happy to tell you that there has been no more nausea, though the other end of my digestive tract has begun to act up, as I was warned it might. I’ve been hitting the Pepto and Imodium quite a bit.
And now it’s Wednesday. I’m extremely tired. And this is supposed to be a “good” day. I’m not supposed to get wiped out, according to my nurses, until the next day or two. Last night, though I wasn’t drinking anything during the night, I had to get up every couple of hours to pee, still getting rid of all the fluids I had accumulated during the previous couple of days. So this morning, I got up, ate breakfast, and went back to the couch to lay or lie down for the rest of the morning. (Our friend Kent, from Lubbock provided me with this rule about laying and lying: “For the record: I (do) lie down; I lay down; l have/had lain down. I (do) lay the frammis on the portico; I laid the frammis on the portico; I have/had laid the frammis on the portico. Your usage in your e-mail was correct. Thus spake Zarathustra, the arbiter of all English usage.” The “frammis” is an old, long running joke about an imaginary home-building part).
After the Cytoxan, a lot of things are going to happen to me, and I’m not likely to be a happy person for a while. When I had the Cytoxan in the past, many of you may remember me writing about having the “fuzzies,” times when I really couldn’t think well, read, type, etc. All I wanted to do, for days at a time, was lie around the house and sleep. Since I’m going to be getting a big walloping dose this time, it’s likely to be worse and last longer. Plus, I was lucky enough to escape nausea last time. I wasn’t so lucky this time. My doc said I may not even have any nausea, and then gave me enough nausea pills, at $10 each for three weeks! Now, what’s that telling you?
Then, the drugs are going to severely depress my white cell counts, hopefully taking all the “bad guys” with them. But, that’s going to make me very susceptible to infections, even from the germs within my body. I’ll have to be on antibiotics again for at least a couple of weeks or so. During that time, Kathy and I are going to “hibernate” within the house. I’ll not be going out where I might be exposed to anyone who might be sick, and Kathy, likewise, will be staying in so as not to bring any new germs into the house. Kathy stocked up the pantry just a few days ago so she wouldn’t have to go out much during that time.
And, as if that's not enough, I’ll have to start giving myself shots of a drug, the Neupogen some of you may remember, to stimulate the growth of my white cells again. I’ll have to do that everyday. I did that last year when we first tried to collect my stem cells, and the side effects weren’t too bad. I did have chest pain, in my sternum, and felt weakened, but not too extremely so. But, now that I presumably have some stem cells that can replicate, I will likely get the side effects, which can be bone pain, flu-like feelings, low grade fever, etc.
So, I’m likely to simultaneously have nausea, bone pain, weakness, “the fuzzies,” loss of appetite, and a significantly depressed immune system which will be susceptible to lots of other infections for a week or so. Does that sound like a good time? Of course, it’s not supposed to be a good time, and lots of you out there, and millions of other folks in the world have gone through much worse times, for longer periods of times, too.
I’ve decided that after we’ve finished the stem cell collection and it’s safe for me to get out, and I get some strength back, I’m going to take Kathy to a B&B for some R&R for a few days. We could rest in the house, to be sure, but that wouldn’t be a rest for Kathy, who would still be waiting on me and taking care of all the chores. She never lets me do much of anything while I’m recovering from chemotherapy. She spoils me! If I’m strong enough to travel, we’re planning to go back to the wonderful Alaska Wolfhouse B&B in Juneau for a few days, the place where we stayed last summer, with Phil and Clovis Dennis (who write that they have had their own interesting experiences with leaking water heaters). They are wonderful and hospitable folks and we had hoped to be able to visit with them again in the future, but they’re retiring from the business next summer. So, we need to go sooner rather than later. And this will provide a perfect reason, presuming I’m strong enough and my white cells are adequate for me to travel. Phil is a retired psychologist and is a lot of fun to talk to. He says a lot of folks tell him that a stay in the Wolfhouse provides Bed, Breakfast and Counseling! Another sub-text to this trip is that I want to see the Northern Lights at some time in my life. I wasn’t able to see any Southern Lights during our recent sojourn into the Antarctic, but March is supposed to be a good time in the northern hemisphere. Maybe we’ll be able to see some interesting things in the sky.
That's more than enough for now. I’ll close this edition, but let you know that something special is coming next time, whenever that is (depends on my mental state!).
Until then,
Dave
Friday, February 27, 2004
Death, Taxes and Home Maintenance
Dave’s So-So Adventure, Book Two
Chapter 2, Verse Six
February 27, 2004
Still (cough) on hold.
Well, this little RSV is kicking my butt. I thought I was getting better last Monday, in fact tried to convince the doc to get on with the show, but after making me listen to my chest, we put it off. Then, I got worse over the next couple of days. I was a little better again yesterday when we went in to the clinic, but had just had the worst night of coughing yet. I was still wheezing, raspy, tired. The nurses called the on-call doc and they decided to hold the cytoxan again, and reculture me for RSV, to see if it was still hanging around or whether my symptoms were just leftover effects of the infection. You know, I do some things in my clinic that folks might consider gross, but when they squirt that saline up my nose and have me blow it back out...now that’s gross!
So we came home and I tried to rest, but my wheezing is worst when I lie down (or is it “lay” down?). I’ve been using an albuterol inhaler, which Jon and Rose-Ellen will be very familiar with. It’s a drug which dilates the bronchioles, making it easier to breathe. Breathing’s a good thing.
So, sickness and chemo or not, life goes on. Now, there are certain things in life that one cannot escape. Do you remember what they are? Those of you who said “Death and Taxes” are not home owners, because Home Maintenance is the third thing that you can never avoid, no matter what else is going on.
We have single pedestal chairs around our dinette, with casters on the base. The chairs rock back and forth, a bit. So, we came home from the clinic and I was sitting in my chair. It seemed to be leaning back a bit more than usual. I looked at it, it looked normal. I tightened up the adjusting screw that tightens the spring resistance and sat back down. And then, the seat fell off the pedestal, and I was on my butt, on the floor! Fortunately, I was still in the seat, which protected my butt from impaling upon the remains of the pedestal! Damn, now what?!
Well, the connecting rod had broken off completely from metal fatigue. Just what I needed. But, we have a few similar chairs in the basement that have various injuries, most suffered at the hands, or weight, of our youngest, who sits down rather heavily. I thought I'd go down to the basement to see if I could find some parts to salvage with which to repair the broken one in the dinette.
Which I did. I was in the basement, checking out the inventory in the chair junkyard when I noticed a puddle of moisture under the water heater nearby. Oh no! I got a flashlight to more closely inspect the much needed and much used item. And, you home owners know what was going on. It was rusting out and leaking! “How could this be,” I thought. “It’s only ten and a half years old.” I went upstairs to check the warranty. You homeowners know what it said, don’t you? It was good for ten years.
Well, I went to the daily paper looking for a sale on water heaters, and there were none, of course. I went out to walk over to the mailbox to get the mail while I mulled our options. We had to do something soon, because after Monday, I’d be out of circulation, sort of under house arrest, if you will, for at least a few weeks while my marrow recovered from the cytoxan.
It has been rather windy recently, as it often is here in the spring. I opened the front door and there were two shingles greeting me on the front steps!! Interestingly, we’re one of the few remaining communities in which the local design codes require you to cover your roof with tinder. We have cedar shake shingles on the roof, and they, too, are ten and a half years old. And a few tend to blow off every time we have high winds. We now have to call the roofer, who can never go away until he’s found at least $500 worth of shingles to replace. Arghhh!
Since I can’t do too much, I brought one of my telescopes inside to mess with it. I have three ‘scopes; small, medium and big. I love looking through the scopes, seeing ancient worlds in the heavens. It’s just fascinating, mesmerizing. I brought in the big scope to do some maintenance on it. It’s fully computerized and can find things that I can’t, but it needed to have the finder scopes adjusted and aligned. But when I turned it on, it blew a chip! It just up and quit! Wouldn’t do anything at all. Great.
So, yesterday, Kathy and I went to Sears, found a water heater on sale for $400, plus $200 installation, of course, plus fees and taxes. It was installed very quickly, I’m happy to say. And then I took the scope to my local telescope shop where I bought it. They fixed it, under warranty, even though it was out of warranty, and I brought it home. And I patched together the chair with some other parts. Now we just need to call the roofer.
I’m still coughing today, but not nearly as badly, and I fully expect that we can proceed with the cytoxan on Monday. I’d like to get this “adventure” back on track. It’s been going much too slowly.
And so we’ll get this update out to all you folks so everybody will know of our latest activities. And lack of progress. Until later....
Dave
Chapter 2, Verse Six
February 27, 2004
Still (cough) on hold.
Well, this little RSV is kicking my butt. I thought I was getting better last Monday, in fact tried to convince the doc to get on with the show, but after making me listen to my chest, we put it off. Then, I got worse over the next couple of days. I was a little better again yesterday when we went in to the clinic, but had just had the worst night of coughing yet. I was still wheezing, raspy, tired. The nurses called the on-call doc and they decided to hold the cytoxan again, and reculture me for RSV, to see if it was still hanging around or whether my symptoms were just leftover effects of the infection. You know, I do some things in my clinic that folks might consider gross, but when they squirt that saline up my nose and have me blow it back out...now that’s gross!
So we came home and I tried to rest, but my wheezing is worst when I lie down (or is it “lay” down?). I’ve been using an albuterol inhaler, which Jon and Rose-Ellen will be very familiar with. It’s a drug which dilates the bronchioles, making it easier to breathe. Breathing’s a good thing.
So, sickness and chemo or not, life goes on. Now, there are certain things in life that one cannot escape. Do you remember what they are? Those of you who said “Death and Taxes” are not home owners, because Home Maintenance is the third thing that you can never avoid, no matter what else is going on.
We have single pedestal chairs around our dinette, with casters on the base. The chairs rock back and forth, a bit. So, we came home from the clinic and I was sitting in my chair. It seemed to be leaning back a bit more than usual. I looked at it, it looked normal. I tightened up the adjusting screw that tightens the spring resistance and sat back down. And then, the seat fell off the pedestal, and I was on my butt, on the floor! Fortunately, I was still in the seat, which protected my butt from impaling upon the remains of the pedestal! Damn, now what?!
Well, the connecting rod had broken off completely from metal fatigue. Just what I needed. But, we have a few similar chairs in the basement that have various injuries, most suffered at the hands, or weight, of our youngest, who sits down rather heavily. I thought I'd go down to the basement to see if I could find some parts to salvage with which to repair the broken one in the dinette.
Which I did. I was in the basement, checking out the inventory in the chair junkyard when I noticed a puddle of moisture under the water heater nearby. Oh no! I got a flashlight to more closely inspect the much needed and much used item. And, you home owners know what was going on. It was rusting out and leaking! “How could this be,” I thought. “It’s only ten and a half years old.” I went upstairs to check the warranty. You homeowners know what it said, don’t you? It was good for ten years.
Well, I went to the daily paper looking for a sale on water heaters, and there were none, of course. I went out to walk over to the mailbox to get the mail while I mulled our options. We had to do something soon, because after Monday, I’d be out of circulation, sort of under house arrest, if you will, for at least a few weeks while my marrow recovered from the cytoxan.
It has been rather windy recently, as it often is here in the spring. I opened the front door and there were two shingles greeting me on the front steps!! Interestingly, we’re one of the few remaining communities in which the local design codes require you to cover your roof with tinder. We have cedar shake shingles on the roof, and they, too, are ten and a half years old. And a few tend to blow off every time we have high winds. We now have to call the roofer, who can never go away until he’s found at least $500 worth of shingles to replace. Arghhh!
Since I can’t do too much, I brought one of my telescopes inside to mess with it. I have three ‘scopes; small, medium and big. I love looking through the scopes, seeing ancient worlds in the heavens. It’s just fascinating, mesmerizing. I brought in the big scope to do some maintenance on it. It’s fully computerized and can find things that I can’t, but it needed to have the finder scopes adjusted and aligned. But when I turned it on, it blew a chip! It just up and quit! Wouldn’t do anything at all. Great.
So, yesterday, Kathy and I went to Sears, found a water heater on sale for $400, plus $200 installation, of course, plus fees and taxes. It was installed very quickly, I’m happy to say. And then I took the scope to my local telescope shop where I bought it. They fixed it, under warranty, even though it was out of warranty, and I brought it home. And I patched together the chair with some other parts. Now we just need to call the roofer.
I’m still coughing today, but not nearly as badly, and I fully expect that we can proceed with the cytoxan on Monday. I’d like to get this “adventure” back on track. It’s been going much too slowly.
And so we’ll get this update out to all you folks so everybody will know of our latest activities. And lack of progress. Until later....
Dave
Monday, February 23, 2004
This Is An Adventure?
Dave’s Great Adventure, Book 2
Chapter 2, Verse 5
February 23, 2004
This is an adventure?
I guess I can’t use the Robert Burns quote again...the “aft aglay” thing...been too recent that I used it. Maybe I can do a search of Burns’ stuff to find something that counsels patience.
We stayed home this weekend waiting for me to get better, and slowly I did. I woke up Sunday morning with a clear chest, but by the afternoon I was again wheezing and coughing. I was disappointed. I called the RMCC on-call folks and told them that I was still sick and would be unlikely to be able to get the cytoxan the next day, so that they would cancel the orders and all the meds wouldn't get brewed up in the pharmacy unnecessarily, and then get wasted.
But today, I woke up with an absolutely clear chest, no congestion and feeling great! I thought, hey, all Kathy’s hot tea has fixed me. I can get the stuff today after all. So we went in ( I had an appointment anyway to get checked out, to get the catheter flushed, etc.) and were there by 9:30. We went to the back where I was to get the cytoxin and the other meds, but first we had to discuss the fact that I had put everything on hold. I told them I felt just great today, but after a couple of calls, they decided to have the doc in the clinic, Doc McSweeney, check me out first. He’s the doc that first put everything on hold last week after I showed up on their doorstep with my cough. Pete’s from New Zealand.
We talked about how I was feeling and I told him I felt just fine. Then he checked me out. He looked in my eyes, in my throat and then listened to my chest. Then he said, “ ‘ave yoo listen’d ta ya chest?” I looked a little puzzled. “Wi’ a ste' oscope?” he continued. I admitted I hadn’t. He insisted that I do just that and handed me his stethoscope. I applied it to my chest and with one breath was hearing wheezing!
Damn! I only THOUGHT I was better.
“Tha’ was better than tellin’ yoo , wasn’ it?” he said. Indeed, how could I argue with what I was hearing. Pete then said we needed to wait longer, perhaps until this coming Thursday, to see if my chest truly would clear. So we made more appointments, Kathy and I proceeded home and she started fetching me more hot tea!
So goes this very slow “adventure.” But something else happened today, only Kathy didn’t realize it at first. Today was our 34 1/2th anniversary. I took Kathy out for a late breakfast at El Tejado, where she ordered chilaquiles, her favorite Mexican breakfast. Then, this afternoon a bunch of flowers arrived for her, reminding her of this rather obscure anniversary. I figured that was the least I could do for her after all the caring she’s done for me over the last two years, not to mention the previous three decades! It really has been quite a ride for us. When we met, I was an ROTC cadet and she was a student teacher in a small college in west Texas. Now, decades later, we have three kids, a nice home, and because of a love of traveling I got from my parents, we’ve been all over the western hemisphere. I guess we’ve been as far west as Hawaii and as far east as Moscow, and from the Arctic Circle in Norway to, more recently, the Antarctic region. Quite a ride.
So, today I found that my family has been up to its usual pranks. A couple of boxes appeared in the mail. The larger was labeled, “Open in case of baldness.” Well, I’m not yet bald but expect to be soon, so I opened the boxes.
I’m now ready for any situation involving baldness and an unprotected head. The box contained a Broncos hard hat, a coonskin cap, a classic ABA Nuggets baseball cap, a Viking horned helmet, a cowboy hat, a Burger King crown and a “write-your-own-message” ball cap with detachable letters. The prepared message on it says “Chemo Victim.” Plus, there were a couple of baggies with hair from our granddaughters with a bottle of Elmer’s Glue with which to apply it to my bare pate. And that wasn’t all. If you’ve seen ads for the movie Calendar Girls, it involves a group of middle aged women who pose undressed in calendar pictures to raise money for leukemia research after the husband of one of them found he had this diagnosis. Well, I’ve now got the calendar! Proceeds of the sale of the calendar still go to leukemia research. Look for one at www.lrf.org.uk. I asked Kathy. She said she wouldn’t pose nude in a calendar for me! How about that?
Plus, I’ve been getting daily get well/ thinking of you cards from my friends and co-workers, Joan and Debbie. Thanks, guys. I look forward to your daily messages.
Meanwhile, I’m almost getting used to having the silly tube hanging out of my chest. It still bothers me, but I can ignore it for the most part. I shower daily with it hanging out, washing carefully around it, and then I have to put a bactericidal potion on the wound every day. I also usually sandwich the thing between two layers of gauze and tape it to my chest to keep it from flopping around too much and tangling in my undershirt. I hope to get it taken out in just over two weeks. When I asked how it is taken out, the doc said, “We yank it out.” Ouch! I can’t wait.
Recently a couple of folks have told me, after reading the stuff I churned out from the Antarctic, and from this never-ending “adventure” series, that I ought to be a writer. Can you believe it? Hey, folks. I AM a writer. Is there any doubt that I write a lot of stuff? It’s just that nobody will actually pay to read my stuff. I have to inflict it on friends and family. Actually, you can all blame the aforementioned Joan for having to hit the delete button so often when you see the dreaded letters “DGA” in an incoming e-mail. Back in July 2002, when I was about to start my first round of chemotherapy, she asked, “Are you going to keep a journal?” And I did. And you’re still getting it.
And just last weekend I found out why. In an article in the Denver Post book section, the Books Editor reviewed a book by a doctor Alice Flaherty, a neurologist, about a condition called “hypergraphia“ which is a compulsion to write. Dr. Flaherty has this affliction. (I’m not making any of this up.) Her book is called The Midnight Disease. It turns out that brain damage or disorders may be a cause of hypergraphia. Many famous writers, like Dostoevski, Lewis Carroll, Tennyson, Poe and others were epileptic. Also, manic depressives tend to write a lot. Flaherty noted that while in a depression support group, all the manic depressives were keeping memoirs. Hmmm. So, did one of the many rocks that hit my head during my childhood cause all this, or is it just my latent manic-depressive personality that’s to blame?
I’ll leave you to ponder this interesting question. And, of course, there’ll be more later.
Dave
Chapter 2, Verse 5
February 23, 2004
This is an adventure?
I guess I can’t use the Robert Burns quote again...the “aft aglay” thing...been too recent that I used it. Maybe I can do a search of Burns’ stuff to find something that counsels patience.
We stayed home this weekend waiting for me to get better, and slowly I did. I woke up Sunday morning with a clear chest, but by the afternoon I was again wheezing and coughing. I was disappointed. I called the RMCC on-call folks and told them that I was still sick and would be unlikely to be able to get the cytoxan the next day, so that they would cancel the orders and all the meds wouldn't get brewed up in the pharmacy unnecessarily, and then get wasted.
But today, I woke up with an absolutely clear chest, no congestion and feeling great! I thought, hey, all Kathy’s hot tea has fixed me. I can get the stuff today after all. So we went in ( I had an appointment anyway to get checked out, to get the catheter flushed, etc.) and were there by 9:30. We went to the back where I was to get the cytoxin and the other meds, but first we had to discuss the fact that I had put everything on hold. I told them I felt just great today, but after a couple of calls, they decided to have the doc in the clinic, Doc McSweeney, check me out first. He’s the doc that first put everything on hold last week after I showed up on their doorstep with my cough. Pete’s from New Zealand.
We talked about how I was feeling and I told him I felt just fine. Then he checked me out. He looked in my eyes, in my throat and then listened to my chest. Then he said, “ ‘ave yoo listen’d ta ya chest?” I looked a little puzzled. “Wi’ a ste' oscope?” he continued. I admitted I hadn’t. He insisted that I do just that and handed me his stethoscope. I applied it to my chest and with one breath was hearing wheezing!
Damn! I only THOUGHT I was better.
“Tha’ was better than tellin’ yoo , wasn’ it?” he said. Indeed, how could I argue with what I was hearing. Pete then said we needed to wait longer, perhaps until this coming Thursday, to see if my chest truly would clear. So we made more appointments, Kathy and I proceeded home and she started fetching me more hot tea!
So goes this very slow “adventure.” But something else happened today, only Kathy didn’t realize it at first. Today was our 34 1/2th anniversary. I took Kathy out for a late breakfast at El Tejado, where she ordered chilaquiles, her favorite Mexican breakfast. Then, this afternoon a bunch of flowers arrived for her, reminding her of this rather obscure anniversary. I figured that was the least I could do for her after all the caring she’s done for me over the last two years, not to mention the previous three decades! It really has been quite a ride for us. When we met, I was an ROTC cadet and she was a student teacher in a small college in west Texas. Now, decades later, we have three kids, a nice home, and because of a love of traveling I got from my parents, we’ve been all over the western hemisphere. I guess we’ve been as far west as Hawaii and as far east as Moscow, and from the Arctic Circle in Norway to, more recently, the Antarctic region. Quite a ride.
So, today I found that my family has been up to its usual pranks. A couple of boxes appeared in the mail. The larger was labeled, “Open in case of baldness.” Well, I’m not yet bald but expect to be soon, so I opened the boxes.
I’m now ready for any situation involving baldness and an unprotected head. The box contained a Broncos hard hat, a coonskin cap, a classic ABA Nuggets baseball cap, a Viking horned helmet, a cowboy hat, a Burger King crown and a “write-your-own-message” ball cap with detachable letters. The prepared message on it says “Chemo Victim.” Plus, there were a couple of baggies with hair from our granddaughters with a bottle of Elmer’s Glue with which to apply it to my bare pate. And that wasn’t all. If you’ve seen ads for the movie Calendar Girls, it involves a group of middle aged women who pose undressed in calendar pictures to raise money for leukemia research after the husband of one of them found he had this diagnosis. Well, I’ve now got the calendar! Proceeds of the sale of the calendar still go to leukemia research. Look for one at www.lrf.org.uk. I asked Kathy. She said she wouldn’t pose nude in a calendar for me! How about that?
Plus, I’ve been getting daily get well/ thinking of you cards from my friends and co-workers, Joan and Debbie. Thanks, guys. I look forward to your daily messages.
Meanwhile, I’m almost getting used to having the silly tube hanging out of my chest. It still bothers me, but I can ignore it for the most part. I shower daily with it hanging out, washing carefully around it, and then I have to put a bactericidal potion on the wound every day. I also usually sandwich the thing between two layers of gauze and tape it to my chest to keep it from flopping around too much and tangling in my undershirt. I hope to get it taken out in just over two weeks. When I asked how it is taken out, the doc said, “We yank it out.” Ouch! I can’t wait.
Recently a couple of folks have told me, after reading the stuff I churned out from the Antarctic, and from this never-ending “adventure” series, that I ought to be a writer. Can you believe it? Hey, folks. I AM a writer. Is there any doubt that I write a lot of stuff? It’s just that nobody will actually pay to read my stuff. I have to inflict it on friends and family. Actually, you can all blame the aforementioned Joan for having to hit the delete button so often when you see the dreaded letters “DGA” in an incoming e-mail. Back in July 2002, when I was about to start my first round of chemotherapy, she asked, “Are you going to keep a journal?” And I did. And you’re still getting it.
And just last weekend I found out why. In an article in the Denver Post book section, the Books Editor reviewed a book by a doctor Alice Flaherty, a neurologist, about a condition called “hypergraphia“ which is a compulsion to write. Dr. Flaherty has this affliction. (I’m not making any of this up.) Her book is called The Midnight Disease. It turns out that brain damage or disorders may be a cause of hypergraphia. Many famous writers, like Dostoevski, Lewis Carroll, Tennyson, Poe and others were epileptic. Also, manic depressives tend to write a lot. Flaherty noted that while in a depression support group, all the manic depressives were keeping memoirs. Hmmm. So, did one of the many rocks that hit my head during my childhood cause all this, or is it just my latent manic-depressive personality that’s to blame?
I’ll leave you to ponder this interesting question. And, of course, there’ll be more later.
Dave
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