I was at the SCCA at 10:45 this morning for a blood test. Yes, it's Sunday, but they scheduled it anyway.
They called me back at about 3:30pm to figure out when I could get there to do another "type and cross" for a blood transfusion. I showed up at about 4:15 and gave another vial.
Now they've just called back and scheduled a transfusion (whole blood) for Monday morning at 8am. It's a 4 hour process. When I'm done, I get to come home and do my regular 4 hour infusion.
NOW HERE'S THE FUN PART: During the "type and cross", I was asked to provide another enteric sample because they "lost" the one I delivered on Friday. An enteric sample consists of 2 four ounce jars of POO! How in hell did they lose a bag full of POO? And if they lost it, where is it now? Does somebody have my medical record number and name now? After all, they were printed on the outside of the containers!
I'm getting a better explanation tomorrow. The errors are starting to accumulate rapidly.
Sunday, November 30, 2008
Friday, November 28, 2008
Reality
Remember "George"? George with the golden egg? The George I never got to meet because he was successfully released from the program before I could shake his hand? George who beat the odds with his positive outlook, interesting character, and supportive family?
This George, quoting from my previous blog entries:
From Tuesday, October 14, 2008
"And then there's a guy I'll call George. George is a character, and I mean a character in the literal sense. See, George wears cowboy clothes. George wears a denim jacket, denim pants, suitable shirt, and a straw cowboy hat that's a virtual caricature of a farmer's straw hat. George also carries around a large (18" high) golden egg. Yup. You read that right. A large golden egg. The egg has a hole in the bottom so he can stick his thumb in it to carry it with one hand. George even wears a single gardening glove to carry the egg so the gold paint doesn't get on his skin.
But George also wears comfortable Seattle-esque shoes. Klog looking things, shoes for ex-hippies. He's always accompanied by his son, a tall, good looking young man of mixed race. Judging by their vocabulary and speech patterns, both of them are well educated. Obviously, George isn't a chicken farmer, egg farmer, or even a post modernist bok choi farmer. He's an educated, liberal minded man with an alter-ego.
George has assumed a character. I've never seen George when he wasn't in farmer drag. The funny thing is, he seems to know LOTS of patients in the center. I guess his get-up has the same effect as my tiger ears. It makes people smile. It makes them start conversations.
Bravo George."
and from Sunday, October 26, 2008
"On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again."
Well, it's been just about a month since George was released from the program.
George died. Pneumonia or some other sort of infection got him.
Perspective.
This George, quoting from my previous blog entries:
From Tuesday, October 14, 2008
"And then there's a guy I'll call George. George is a character, and I mean a character in the literal sense. See, George wears cowboy clothes. George wears a denim jacket, denim pants, suitable shirt, and a straw cowboy hat that's a virtual caricature of a farmer's straw hat. George also carries around a large (18" high) golden egg. Yup. You read that right. A large golden egg. The egg has a hole in the bottom so he can stick his thumb in it to carry it with one hand. George even wears a single gardening glove to carry the egg so the gold paint doesn't get on his skin.
But George also wears comfortable Seattle-esque shoes. Klog looking things, shoes for ex-hippies. He's always accompanied by his son, a tall, good looking young man of mixed race. Judging by their vocabulary and speech patterns, both of them are well educated. Obviously, George isn't a chicken farmer, egg farmer, or even a post modernist bok choi farmer. He's an educated, liberal minded man with an alter-ego.
George has assumed a character. I've never seen George when he wasn't in farmer drag. The funny thing is, he seems to know LOTS of patients in the center. I guess his get-up has the same effect as my tiger ears. It makes people smile. It makes them start conversations.
Bravo George."
and from Sunday, October 26, 2008
"On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again."
Well, it's been just about a month since George was released from the program.
George died. Pneumonia or some other sort of infection got him.
Perspective.
Thursday, November 27, 2008
Thanksgiving day, 2008
Today was Thanksgiving day in the US. For my off-shore readers, it's our secular celebration of the fall harvest and a feast of extreme opulence. Yes, even the food kitchens put on an extra spoonful of beans on Thanksgiving.
Canada celebrates its Thanksgiving on the second Monday of October each year. The US celebrates on the fourth Thursday in November. As such, Ed was unable to come down from Vancouver for the US holiday. (But he did spend a long weekend here in October for Canada's holiday.)
Regardless, I wasn't alone this Thanksgiving. We have friends who live about 45 minutes away and I was invited. They shared their new home with 25+ family members and friends. The feast was amazing, the friendship excellent, and we each had plenty to be thankful for.
At least I certainly did. I have good readers, good friends, good family, a terrific spouse, and a good prognosis. That makes for a good life. 2009 looks like an overall 'up' for us.
Thank you all.
Canada celebrates its Thanksgiving on the second Monday of October each year. The US celebrates on the fourth Thursday in November. As such, Ed was unable to come down from Vancouver for the US holiday. (But he did spend a long weekend here in October for Canada's holiday.)
Regardless, I wasn't alone this Thanksgiving. We have friends who live about 45 minutes away and I was invited. They shared their new home with 25+ family members and friends. The feast was amazing, the friendship excellent, and we each had plenty to be thankful for.
At least I certainly did. I have good readers, good friends, good family, a terrific spouse, and a good prognosis. That makes for a good life. 2009 looks like an overall 'up' for us.
Thank you all.
Tuesday, November 25, 2008
Long and positive day at the SCCA
I spent nearly 6 hours at the SCCA today. Part of the day was spent discussing the results of my bone marrow biopsy last Friday.
The test was NEGATIVE, meaning there is no detectable cancer in my bone marrow. ("Negative" being very positive in this case.)
There are still a few peripheral tests that have to be run before we can claim victory, but things look pretty good right now.
I still have to deal with the GVHD, 39 pills, infusions, and topicals that fill my day, but it looks like we've been given a bit of a reprieve from the scythe of Death. I might have to pet his dog "Misery" from time to time, but his bark is often worse than his bite.
Realistically, I know that a single cancer cell hiding underneath my smallest toenail can re-start this whole process. I know that the treatments I've received over the last two years can give me a plethora of different cancers. I know I'll never be the man I was two years ago.
On the other hand, I look forward to becoming the man I'll be two years from now.
The test was NEGATIVE, meaning there is no detectable cancer in my bone marrow. ("Negative" being very positive in this case.)
There are still a few peripheral tests that have to be run before we can claim victory, but things look pretty good right now.
I still have to deal with the GVHD, 39 pills, infusions, and topicals that fill my day, but it looks like we've been given a bit of a reprieve from the scythe of Death. I might have to pet his dog "Misery" from time to time, but his bark is often worse than his bite.
Realistically, I know that a single cancer cell hiding underneath my smallest toenail can re-start this whole process. I know that the treatments I've received over the last two years can give me a plethora of different cancers. I know I'll never be the man I was two years ago.
On the other hand, I look forward to becoming the man I'll be two years from now.
Monday, November 24, 2008
Knockout!
Ed snored like a diesel chain saw last night, so I didn't get much sleep for my leukapheresis at 8 this morning. No big deal, right?
So they did a blood draw for research before the procedure. The nurse estimated about 500cc of draw.
Then she hooked me to the pump, turned it on and......
I went down for the count!
All I remember saying is: "I don't feel good." and then trying to keep my lower GI under control.
BP was incredibly low. Pulse rate was stunningly high. I perspired like an Arizona hitch-hiker in August. I had the pallor of a Renaissance virgin.
Suddenly the room FILLED with nurses (literally 5). One lowered the head of the bed and shut off the machine, another put a cold towel on my head, another suggested I undo my belt. The other two were doing nurse things I couldn't quite wrap my brain around at the time. Now I realize they'd taken some steps toward "we might need to resuscitate".
And all their little remedies worked. I returned to the land of the fully conscious in a couple of minutes. My assigned nurse turned the machine back on and I went to sleep. When I awoke, she was sitting in a chair just watching me.
Yeah, sometimes I complain about minor inconveniences and inefficiencies at the SCCA, but most of the time, the service is stellar.
Back again tomorrow at 9:30. Last appointment is at 2p
So they did a blood draw for research before the procedure. The nurse estimated about 500cc of draw.
Then she hooked me to the pump, turned it on and......
I went down for the count!
All I remember saying is: "I don't feel good." and then trying to keep my lower GI under control.
BP was incredibly low. Pulse rate was stunningly high. I perspired like an Arizona hitch-hiker in August. I had the pallor of a Renaissance virgin.
Suddenly the room FILLED with nurses (literally 5). One lowered the head of the bed and shut off the machine, another put a cold towel on my head, another suggested I undo my belt. The other two were doing nurse things I couldn't quite wrap my brain around at the time. Now I realize they'd taken some steps toward "we might need to resuscitate".
And all their little remedies worked. I returned to the land of the fully conscious in a couple of minutes. My assigned nurse turned the machine back on and I went to sleep. When I awoke, she was sitting in a chair just watching me.
Yeah, sometimes I complain about minor inconveniences and inefficiencies at the SCCA, but most of the time, the service is stellar.
Back again tomorrow at 9:30. Last appointment is at 2p
Saturday, November 22, 2008
Rough week
It's Saturday night of what's been a rough week.
Between the procedures, the tests, the exit process, and the continued GVHD, I haven't felt like doing much.
Friday's bone marrow biopsy and skin biopsy were obviously no fun. "Medical Photography" turned out to be a short series of photos at my physical limits. The steroid taper hasn't been kind, and I've been given "G" (Neupogen, the marrow growth stimulant) 3 times this week.
So my bones hurt, my GI is becoming inflamed, I'm not absorbing pills because of the GI issues, and I'm losing weight again.. Three pounds (~1.5 kilos) in a week.
Tomorrow I have a blood test and start a "24 hour urine" collection.
Monday, I start my day at 8am with a leukapheresis IF Sunday's blood test goes well. If the test comes up with bad numbers, I start with a transfusion and then the leukapheresis. I have something scheduled at the SCCA every single day next week.
Highlight of the week? Ed is here in Seattle with me this weekend. He's so good for my blood pressure.
Between the procedures, the tests, the exit process, and the continued GVHD, I haven't felt like doing much.
Friday's bone marrow biopsy and skin biopsy were obviously no fun. "Medical Photography" turned out to be a short series of photos at my physical limits. The steroid taper hasn't been kind, and I've been given "G" (Neupogen, the marrow growth stimulant) 3 times this week.
So my bones hurt, my GI is becoming inflamed, I'm not absorbing pills because of the GI issues, and I'm losing weight again.. Three pounds (~1.5 kilos) in a week.
Tomorrow I have a blood test and start a "24 hour urine" collection.
Monday, I start my day at 8am with a leukapheresis IF Sunday's blood test goes well. If the test comes up with bad numbers, I start with a transfusion and then the leukapheresis. I have something scheduled at the SCCA every single day next week.
Highlight of the week? Ed is here in Seattle with me this weekend. He's so good for my blood pressure.
Tuesday, November 18, 2008
A conundrum.
Recently, an anonymous reader commented that I am both insightful and honest. It was a wonderful compliment. Thank you, whoever you are.
However, I sometimes wonder if I'm merely self important and tactless.
To some extent, I have to think that what I write is somehow significant. Otherwise I wouldn't expend the time and effort. Therein could lie self importance.
Similarly, my honesty could come from thinking my prose is SO significant that I can go against social norms and write whatever I want.
So the conundrum is: Is this post insightful and honest, or is it selfish and tactless? I think perspective comes into play. Optimists might say the former, pessimists might say the latter. Analysts might say it's all about my personal therapy and that I don't have an altruistic bone in my body.
Maybe they're all correct.
Caveat lector - Let the reader beware.
However, I sometimes wonder if I'm merely self important and tactless.
To some extent, I have to think that what I write is somehow significant. Otherwise I wouldn't expend the time and effort. Therein could lie self importance.
Similarly, my honesty could come from thinking my prose is SO significant that I can go against social norms and write whatever I want.
So the conundrum is: Is this post insightful and honest, or is it selfish and tactless? I think perspective comes into play. Optimists might say the former, pessimists might say the latter. Analysts might say it's all about my personal therapy and that I don't have an altruistic bone in my body.
Maybe they're all correct.
Caveat lector - Let the reader beware.
New schedule, new plan.
Even though they forgot to order hydration for the upcoming week, today was fairly productive at the SCCA.
1) I've been put on a prednisone taper. I can finally start prying the monkey off my back. (And off Ed's back too.)
2) I have a class to attend tomorrow at 1:30. It's called "Long Term Follow Up - Departure orientation". What's that mean? It means they're sending me to classes on making a graceful exit from the program. From a positive perspective, this could mean I'm cured and almost done with this fiasco. From a negative perspective, it could mean I'm out of luck and they're almost done with me. I'll have the former, thank you!
3) There's a dental exam and a pulmonary test on Thursday. These are standard exit moves.
4) Friday shows, in the following order:
A) A fasting blood draw.
B) Physical therapy for one hour.
C) A bone marrow biopsy.
D) "Medical photography".
E) A team visit.
So I'm looking at the positive side. I'm finishing up. Graduation day is coming. I'm taking finals. I'm currently scheduled thru December 28 on a minor scale. 2009 might actually be in Vancouver with Ed.
Yippee!
1) I've been put on a prednisone taper. I can finally start prying the monkey off my back. (And off Ed's back too.)
2) I have a class to attend tomorrow at 1:30. It's called "Long Term Follow Up - Departure orientation". What's that mean? It means they're sending me to classes on making a graceful exit from the program. From a positive perspective, this could mean I'm cured and almost done with this fiasco. From a negative perspective, it could mean I'm out of luck and they're almost done with me. I'll have the former, thank you!
3) There's a dental exam and a pulmonary test on Thursday. These are standard exit moves.
4) Friday shows, in the following order:
A) A fasting blood draw.
B) Physical therapy for one hour.
C) A bone marrow biopsy.
D) "Medical photography".
E) A team visit.
So I'm looking at the positive side. I'm finishing up. Graduation day is coming. I'm taking finals. I'm currently scheduled thru December 28 on a minor scale. 2009 might actually be in Vancouver with Ed.
Yippee!
Sunday, November 16, 2008
Mellow observations.
I've been a bit introspective today. I've made some realizations:
1) While I've been frustrated/angry over the SCCA's recent inefficiencies, I have to realize that these are anomalies. They will be corrected and they will resolve themselves if we all cooperate. In general, the SCCA has a terrific program.
2) My perceptions might have changed in the last 60 days. I might be over-reacting to situations. Seasonal changes and general malaise could be contributing factors. I need to control my temper and think before I open my mouth.
3) A perusal of various other MM blogs from a dozen or more authors is quite humbling. I find the average MM blogger to be intelligent, witty, articulate, and stunningly self-aware. I also find it interesting that NONE of them is giving up. Every one of the blogs is about moving forward in some way.
Now, as for today's health, I think my cold is getting worse. The shortness of breath is increasing slightly. Further, I've really felt out-of-sorts today. I did 2 loads of laundry and that's about it. The majority of the day was spent in front of the computer. This hasn't been my finest hour.
And now, you know the rest of the story.
1) While I've been frustrated/angry over the SCCA's recent inefficiencies, I have to realize that these are anomalies. They will be corrected and they will resolve themselves if we all cooperate. In general, the SCCA has a terrific program.
2) My perceptions might have changed in the last 60 days. I might be over-reacting to situations. Seasonal changes and general malaise could be contributing factors. I need to control my temper and think before I open my mouth.
3) A perusal of various other MM blogs from a dozen or more authors is quite humbling. I find the average MM blogger to be intelligent, witty, articulate, and stunningly self-aware. I also find it interesting that NONE of them is giving up. Every one of the blogs is about moving forward in some way.
Now, as for today's health, I think my cold is getting worse. The shortness of breath is increasing slightly. Further, I've really felt out-of-sorts today. I did 2 loads of laundry and that's about it. The majority of the day was spent in front of the computer. This hasn't been my finest hour.
And now, you know the rest of the story.
Saturday, November 15, 2008
2WheelTiger is open.
For those who are following my external life, my new website is open.
It's http://www.2WheelTiger.com. It's not fully fleshed-out yet, but I'm moving lots of stuff from my CycleTips and Wandering-Tourist blogs into it. Before I post new adventures, I'll be adding new articles about old adventures.
One of the nicer features allows you to go into the Media section and run a continuous slideshow of my travel pics in full screen mode. I have hundreds of them that need to be uploaded.
So check back from time to time. RSS feeds are available.
It's http://www.2WheelTiger.com. It's not fully fleshed-out yet, but I'm moving lots of stuff from my CycleTips and Wandering-Tourist blogs into it. Before I post new adventures, I'll be adding new articles about old adventures.
One of the nicer features allows you to go into the Media section and run a continuous slideshow of my travel pics in full screen mode. I have hundreds of them that need to be uploaded.
So check back from time to time. RSS feeds are available.
Solo weekend
I've had some kind of upper respiratory trouble for a little over a week. Well, it looks like Ed caught it from me while he was here. (Or at least it would appear that way.) There are people in his office who are claiming to be sick, so Ed might have some other illness, but looking at the symptoms, he has what I have.
Clear discharge. Coughing. Sore throat. NO fever. Basso Profundo voice. Hmmmm.......
Regardless, he feels pretty bad. He feels that way because he has an immune system and his body is reacting normally. Me? I don't feel bad. Yeah, I have some breathing problems, but I don't feel like I'm sick. Duh, I have no immune system!
(Is there any wonder why I want to get off prednisone? Besides having a virtually no immune system, the prednisone hides any inflammation or illness!)
Anyway, Ed's staying up in Vancouver this weekend. We're not terribly worried about being reinfected with the same strain, but since there's a chance that his illness is from someone in his lab...... It's better to stay apart for a few more days than it is for me to get a fresh infection I can't fight.
As I told Ed, "It's better to be lonely than dead."
Clear discharge. Coughing. Sore throat. NO fever. Basso Profundo voice. Hmmmm.......
Regardless, he feels pretty bad. He feels that way because he has an immune system and his body is reacting normally. Me? I don't feel bad. Yeah, I have some breathing problems, but I don't feel like I'm sick. Duh, I have no immune system!
(Is there any wonder why I want to get off prednisone? Besides having a virtually no immune system, the prednisone hides any inflammation or illness!)
Anyway, Ed's staying up in Vancouver this weekend. We're not terribly worried about being reinfected with the same strain, but since there's a chance that his illness is from someone in his lab...... It's better to stay apart for a few more days than it is for me to get a fresh infection I can't fight.
As I told Ed, "It's better to be lonely than dead."
Stem to stern
At about 10a on Friday, the SCCA realized they hadn't scheduled an appointment with me, so they called me as I exited the parking lot from my blood test and said "Can we see you at 2p?"
Whatever! I hope this series of stupid moves doesn't continue beyond this week. I know that a complete change of staff can do that to an organization, but this is out of control.
Regardless, the 2p meeting was interesting. Again, they decided to do nothing and change nothing based on the latest results and my new symptoms. Here are the primary issues:
1) I still have an upper respiratory infection of some sort. No fever, but there's a lot of clear discharge from my nose and throat. All of the assays show I have no infection.
2) I get stunningly short of breath. Walking a block makes me see stars and pant like a marathoner. Breath sounds are normal and X-rays are normal.
3) I bruise at the drop of a hat. It's so bad that I jokingly said, "If I push right here, I'll probably get a bruise." Sure as hell, I had a bruise right there in about 2 hours. Mind you, I'm not on blood thinners and my blood counts have been lower than this in the past. We have no idea what's going on.
So, if you couple these new developments with the results of Wednesday's spelunking expedition. You come up with.......
GVHD from stem to stern. No CMV, just plain old garden variety Graft V Host Disease. The donor cells are trying to kill me.
Now remember, that's not a completely bad thing. We have to have GVHD in order to get Graft V Tumor (GVT). So part of me is saying, "Yipee" and the other part is saying "Please get me off these damned steroids!"
Meanwhile, the SCCA is saying, "We need to get you off the steroids, but we're not going to do anything about it yet." They've been procrastinating for weeks.
Yesterday they said they'd make a decision on Tuesday at the regular clinic meeting. What they don't know is that I'll be making the decision for them. If they decide they're going to do nothing again - make no decisions and make no changes - I'm simply going to tell them I'll be putting myself on a prednisone taper.
That will give them three options. They will have to:
1) Allow their patient to do something that's not in his best interest. (If that's their belief.)
2) Offer a suitable taper schedule because they might as well control the inevitable.
3) Have a serious conversation amongst themselves about what to change.
I might not have the best poker hand at the table, but I'm not scared of a good bluff.
Whatever! I hope this series of stupid moves doesn't continue beyond this week. I know that a complete change of staff can do that to an organization, but this is out of control.
Regardless, the 2p meeting was interesting. Again, they decided to do nothing and change nothing based on the latest results and my new symptoms. Here are the primary issues:
1) I still have an upper respiratory infection of some sort. No fever, but there's a lot of clear discharge from my nose and throat. All of the assays show I have no infection.
2) I get stunningly short of breath. Walking a block makes me see stars and pant like a marathoner. Breath sounds are normal and X-rays are normal.
3) I bruise at the drop of a hat. It's so bad that I jokingly said, "If I push right here, I'll probably get a bruise." Sure as hell, I had a bruise right there in about 2 hours. Mind you, I'm not on blood thinners and my blood counts have been lower than this in the past. We have no idea what's going on.
So, if you couple these new developments with the results of Wednesday's spelunking expedition. You come up with.......
GVHD from stem to stern. No CMV, just plain old garden variety Graft V Host Disease. The donor cells are trying to kill me.
Now remember, that's not a completely bad thing. We have to have GVHD in order to get Graft V Tumor (GVT). So part of me is saying, "Yipee" and the other part is saying "Please get me off these damned steroids!"
Meanwhile, the SCCA is saying, "We need to get you off the steroids, but we're not going to do anything about it yet." They've been procrastinating for weeks.
Yesterday they said they'd make a decision on Tuesday at the regular clinic meeting. What they don't know is that I'll be making the decision for them. If they decide they're going to do nothing again - make no decisions and make no changes - I'm simply going to tell them I'll be putting myself on a prednisone taper.
That will give them three options. They will have to:
1) Allow their patient to do something that's not in his best interest. (If that's their belief.)
2) Offer a suitable taper schedule because they might as well control the inevitable.
3) Have a serious conversation amongst themselves about what to change.
I might not have the best poker hand at the table, but I'm not scared of a good bluff.
Wednesday, November 12, 2008
LIVID at the SCCA
On Monday, I was told they would do a spelunking adventure on Wednesday. I was also told that they would want a blood test early in the day so that they could determine if I needed platelets before the expedition.
A bunch of hoo-hoo transpired and I was finally given a 10am blood test appointment for today, Wednesday. I appeared on time, submitted my two vials, and then waited for my 12:30 Sedation Assessment. Yup, 2.5 hours sitting in "respiratory isolation". Remember my minor head cold? "Go sit in that little room and read the 'Welcome to the SCCA' brochure 1200 times."
I was supposed to have the expedition done at 1:30.
Well, it didn't happen at 12:30 or 1:30. It happened at almost 3:00, and you know what? THEY DIDN'T DO ANYTHING WITH THE BLOOD SAMPLE. THERE WERE NO TESTS. THERE WERE NO RESULTS. THERE WAS NOTHING. NOTHING!
How in HELL do you write an order for a blood draw that's not associated with a specific test? How the HELL do you do a draw without performing a test?
Now, do you know what they want me to do at 10:30 tomorrow (Thursday)? COME IN FOR A BLOOD TEST so I can come back on Friday for another blood test at 8:30.
Do you know WHY? It's because they're worried that I might need platelets. This means they'll do the draw, do some tests, and maybe call me at 2pm to come back and get a 4 hour infusion.
Gee, I hope they don't need to do another "type and cross" before the platelets. That would mean I'd have to come back AGAIN and spend my entire Friday there too!
And apparently my team thinks we have an appointment on Friday. It doesn't show up on my schedule.
FWIW - my PAs are 'job sharing' with one working early in the week and the other working late in the week. My scheduler is on vacation.
What we have here is a failure to communicate. Morons. I'm gonna go ballistic tomorrow.
A bunch of hoo-hoo transpired and I was finally given a 10am blood test appointment for today, Wednesday. I appeared on time, submitted my two vials, and then waited for my 12:30 Sedation Assessment. Yup, 2.5 hours sitting in "respiratory isolation". Remember my minor head cold? "Go sit in that little room and read the 'Welcome to the SCCA' brochure 1200 times."
I was supposed to have the expedition done at 1:30.
Well, it didn't happen at 12:30 or 1:30. It happened at almost 3:00, and you know what? THEY DIDN'T DO ANYTHING WITH THE BLOOD SAMPLE. THERE WERE NO TESTS. THERE WERE NO RESULTS. THERE WAS NOTHING. NOTHING!
How in HELL do you write an order for a blood draw that's not associated with a specific test? How the HELL do you do a draw without performing a test?
Now, do you know what they want me to do at 10:30 tomorrow (Thursday)? COME IN FOR A BLOOD TEST so I can come back on Friday for another blood test at 8:30.
Do you know WHY? It's because they're worried that I might need platelets. This means they'll do the draw, do some tests, and maybe call me at 2pm to come back and get a 4 hour infusion.
Gee, I hope they don't need to do another "type and cross" before the platelets. That would mean I'd have to come back AGAIN and spend my entire Friday there too!
And apparently my team thinks we have an appointment on Friday. It doesn't show up on my schedule.
FWIW - my PAs are 'job sharing' with one working early in the week and the other working late in the week. My scheduler is on vacation.
What we have here is a failure to communicate. Morons. I'm gonna go ballistic tomorrow.
Friday, November 07, 2008
Pre-lunking
Today I had a blood test, physical therapy, and a team appointment.
The blood test was horrible. Of the 13 items on the CBC, 10 of them were terribly low. I seem to be running on about 1/2 the blood density I should have. Gancyclovir is the primary culprit in this problem. In the words of the PA, "It's a poison."
Yippee.
So they've decided the spelunking expedition will be on Wednesday at about noon-thirty. They plan on having me out of there (conscious) at about 4p. I have a blood test beforehand at 11:45.
On Monday, I have to be there at 7:15a. Yeah, SEVEN FIFTEEN for a blood test before a team visit at 9:45a. I'll probably come home and sleep some more afterward.
My PT session was interesting. It was difficult to get my heart rate up. I wasn't sweating or working very hard, but my pulse only went from 71 to 83 in the entire session. You'd think that my low blood density would make the rate increase rapidly, but it didn't. Odd.
(If memory serves, human pulse and breathing rate are triggered off carbon dioxide levels in the blood, so there might not be a direct correlation between work levels and pulse in people with low blood densities. I need to investigate this.)
Anyway, I guess Monday is pre-spelunking data. Then Wednesday is the expedition. Eventually they'll find out if I have GVHD, CMV, or both.
What's the REAL goal? It's to get me off steroids. Just like back in early '07, the prednisone could be hiding the Wicked Witch of the West inside my body. I really don't want them to open me up again. Really. I mean REALLY.
The blood test was horrible. Of the 13 items on the CBC, 10 of them were terribly low. I seem to be running on about 1/2 the blood density I should have. Gancyclovir is the primary culprit in this problem. In the words of the PA, "It's a poison."
Yippee.
So they've decided the spelunking expedition will be on Wednesday at about noon-thirty. They plan on having me out of there (conscious) at about 4p. I have a blood test beforehand at 11:45.
On Monday, I have to be there at 7:15a. Yeah, SEVEN FIFTEEN for a blood test before a team visit at 9:45a. I'll probably come home and sleep some more afterward.
My PT session was interesting. It was difficult to get my heart rate up. I wasn't sweating or working very hard, but my pulse only went from 71 to 83 in the entire session. You'd think that my low blood density would make the rate increase rapidly, but it didn't. Odd.
(If memory serves, human pulse and breathing rate are triggered off carbon dioxide levels in the blood, so there might not be a direct correlation between work levels and pulse in people with low blood densities. I need to investigate this.)
Anyway, I guess Monday is pre-spelunking data. Then Wednesday is the expedition. Eventually they'll find out if I have GVHD, CMV, or both.
What's the REAL goal? It's to get me off steroids. Just like back in early '07, the prednisone could be hiding the Wicked Witch of the West inside my body. I really don't want them to open me up again. Really. I mean REALLY.
Wednesday, November 05, 2008
Tree rings.
For some time, scientists have been saying that we can tell the history of weather by inspecting tree rings. If I remember the relationships correctly, wet summers make the rings thicker and thin rings tell us there was a drought. If you look at really old trees, you can supposedly see cyclic patterns in weather.
Humans appear to be the same as trees. Our hair and nails are our rings.
I've got 4 distinct patterns of thickness on each nail. There's direct temporal correlation between every nail on my hands and toes. The growth patterns have changed, the coloring has changed, and there are ridges on all of them.
These aren't funny little stripes that go down the length of the nail. They're across the width of each nail. They represent a health timeline over the last 60 days and they're far from subtle. They can be seen from several feet away.
As far as hair, I haven't whipped out the microscope, but I know my hair color is changing. It used to be dark brown with a lot of grey. Now it's a medium brown with less grey. Having talked to a few former transplantees, this is not uncommon.
On the general health front, I'm still having lower GI troubles. The docs want to do a spelunking expedition on Friday but I want them to wait until Monday when Ed is in town. It seems they're being pressured for info by my regular oncologist. He wants to know if he should treat me further for GVHD or CMV. (The CMV counts are going down so we know the drugs are working.) Odd, but the GI docs also mentioned that my problem(s) could be the result of my MMF dose. Funny how I've never heard that from the oncology team before.
Oh, the team expects I'll need another transfusion before the spelunking expedition. My platelet count is going down.
Kidney function is good. Energy is good. I improve a little bit every day.
Humans appear to be the same as trees. Our hair and nails are our rings.
I've got 4 distinct patterns of thickness on each nail. There's direct temporal correlation between every nail on my hands and toes. The growth patterns have changed, the coloring has changed, and there are ridges on all of them.
These aren't funny little stripes that go down the length of the nail. They're across the width of each nail. They represent a health timeline over the last 60 days and they're far from subtle. They can be seen from several feet away.
As far as hair, I haven't whipped out the microscope, but I know my hair color is changing. It used to be dark brown with a lot of grey. Now it's a medium brown with less grey. Having talked to a few former transplantees, this is not uncommon.
On the general health front, I'm still having lower GI troubles. The docs want to do a spelunking expedition on Friday but I want them to wait until Monday when Ed is in town. It seems they're being pressured for info by my regular oncologist. He wants to know if he should treat me further for GVHD or CMV. (The CMV counts are going down so we know the drugs are working.) Odd, but the GI docs also mentioned that my problem(s) could be the result of my MMF dose. Funny how I've never heard that from the oncology team before.
Oh, the team expects I'll need another transfusion before the spelunking expedition. My platelet count is going down.
Kidney function is good. Energy is good. I improve a little bit every day.
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