Oncology visit today. Checking in to the hospital at 4pm local time. GVHD of the skin and gut. Hydration issues. Inability to eat.
I'm SO tired of this.
Wednesday, December 31, 2008
Friday, December 26, 2008
Forks.
My brother and I were driving down to Seattle from Vancouver this morning and he made an interesting comment. He said he didn't know if he could do what I've done over the last two+ years.
Fact is, I know he could and would, and he'd probably be more gracious about it than I've been, but his comment caused me to think.
Each of us faces forks in our road on a daily basis. Sometimes the forks present viable options, sometimes the forks only provide an inconvenient detour.
One can never know what might have happened by taking the other fork. One can only know what's on the fork chosen.
When Ed and I were presented with my MM diagnosis, we saw it as a major detour in our lives. We saw no logical choice but the path we selected. Yes, we could have elected to do nothing, but we chose an aggressive course against the disease and that's the course we're still on.
However, this course has presented us with other significant forks in our road. That's the odd thing about the whole process. Once you get on this highway, you still need to make decisions and deal with the results. Having cancer does not absolve responsibility or remove future plans.
As an example, Ed could have refused his current position because of my condition, but we chose not to let the opportunity pass. In some ways it made our life more difficult in the short-term, but it will probably make our future (and certainly Ed's) better because we've taken this fork in the road. One can only postulate.
The thing that is most odd and unappreciated about the entire process is the incremental nature of it all. We started with a couple of cracked ribs and a feeling of malaise. Now we're beyond surgery and a pair of bone marrow transplants, into GVHD and asking ourselves 'quality of life' questions. We make social decisions based upon criteria only we understand. We've transitioned from me being a person with cancer to me being a cancer patient. Yes, I know it's semantics, but the difference is significant.
It's as if the diagnosis was a 5 pound weight we'd been given to carry around. At some random interval, somebody gives us another pound or two to add to our burden, and before long, you realize you're carrying half a ton of stuff and there's no place to put it down! Sometimes someone comes along and takes 5 pounds off the load by saying "you've engrafted", or ten pounds by saying "we see no tumor cells", but then they give you seven pounds back by saying "the graft isn't working".
From our perspective in the beginning, it would have been difficult to guess the size of the current load. From our current perspective it's difficult to estimate the size of our future load. We HOPE the load will be less than it is now, but we don't know. If I could foretell futures, I'd play the lotto.
Fact is, I know he could and would, and he'd probably be more gracious about it than I've been, but his comment caused me to think.
Each of us faces forks in our road on a daily basis. Sometimes the forks present viable options, sometimes the forks only provide an inconvenient detour.
One can never know what might have happened by taking the other fork. One can only know what's on the fork chosen.
When Ed and I were presented with my MM diagnosis, we saw it as a major detour in our lives. We saw no logical choice but the path we selected. Yes, we could have elected to do nothing, but we chose an aggressive course against the disease and that's the course we're still on.
However, this course has presented us with other significant forks in our road. That's the odd thing about the whole process. Once you get on this highway, you still need to make decisions and deal with the results. Having cancer does not absolve responsibility or remove future plans.
As an example, Ed could have refused his current position because of my condition, but we chose not to let the opportunity pass. In some ways it made our life more difficult in the short-term, but it will probably make our future (and certainly Ed's) better because we've taken this fork in the road. One can only postulate.
The thing that is most odd and unappreciated about the entire process is the incremental nature of it all. We started with a couple of cracked ribs and a feeling of malaise. Now we're beyond surgery and a pair of bone marrow transplants, into GVHD and asking ourselves 'quality of life' questions. We make social decisions based upon criteria only we understand. We've transitioned from me being a person with cancer to me being a cancer patient. Yes, I know it's semantics, but the difference is significant.
It's as if the diagnosis was a 5 pound weight we'd been given to carry around. At some random interval, somebody gives us another pound or two to add to our burden, and before long, you realize you're carrying half a ton of stuff and there's no place to put it down! Sometimes someone comes along and takes 5 pounds off the load by saying "you've engrafted", or ten pounds by saying "we see no tumor cells", but then they give you seven pounds back by saying "the graft isn't working".
From our perspective in the beginning, it would have been difficult to guess the size of the current load. From our current perspective it's difficult to estimate the size of our future load. We HOPE the load will be less than it is now, but we don't know. If I could foretell futures, I'd play the lotto.
Thursday, December 25, 2008
Merry Christmas '08
Christmas eve was eventful. I'd been in Seattle overnight for an appointment on Christmas eve during the day. It snowed like no body's business again.
The intent was to get my appointment done and head back up to Vancouver ASAP because my brother and his husband were flying in for a holiday visit. Their flight was late leaving Dallas, and then it was diverted to, drum-roll please, Seattle to take on more fuel.
I was still in Seattle and they were held captive in the big aluminum tube until it was finally allowed to fly north to Vancouver. When you consider taxi, take-off, and gate times, I think their trip from Seattle to Vancouver took longer than my drive in the ice and snow. But they're here now, and I'm here with Ed, and it's all good.
Two unpleasant things happened at the SCCA yesterday. I was 'emergency' scheduled for another transfusion because my numbers are so low. I waited 4 hours for the 'type and cross' and the blood delivery. When the blood finally arrived, IT WAS THE WRONG TYPE. 4 hours wasted and no transfusion! I have to return to Seattle tomorrow. Not good.
The second issue, and I have yet to tell this to my brother (but Ed knows) is that my oncologist, Dr. B. made the following statement. "I'm worried. The graft isn't working."
For the record, I've engrafted, meaning that the graft has taken over my body and apparently killed the tumors. However, the graft doesn't appear to be producing blood cells. Thus, I get growth factor "G" at every visit, and I've been getting transfusions like I had a severed limb.
I like Dr. B. He's not rude, he's simply factual. He tells it like it is without pussy-footing around. There's no pie-in-the-sky pandering and false hope. For him to say, "I'm worried. The graft isn't working." makes me think the graft isn't working and he's worried. (Duh!)
I'm worried. Ed is worried.
Of course, Ed is being positive about it, hoping and maintaining his cheery disposition. He's already investigating my options for another transplant. But i have to be honest. I don't know what to say or do about an option like that, even if it's possible.
Even Jesus was only crucified once.
The intent was to get my appointment done and head back up to Vancouver ASAP because my brother and his husband were flying in for a holiday visit. Their flight was late leaving Dallas, and then it was diverted to, drum-roll please, Seattle to take on more fuel.
I was still in Seattle and they were held captive in the big aluminum tube until it was finally allowed to fly north to Vancouver. When you consider taxi, take-off, and gate times, I think their trip from Seattle to Vancouver took longer than my drive in the ice and snow. But they're here now, and I'm here with Ed, and it's all good.
Two unpleasant things happened at the SCCA yesterday. I was 'emergency' scheduled for another transfusion because my numbers are so low. I waited 4 hours for the 'type and cross' and the blood delivery. When the blood finally arrived, IT WAS THE WRONG TYPE. 4 hours wasted and no transfusion! I have to return to Seattle tomorrow. Not good.
The second issue, and I have yet to tell this to my brother (but Ed knows) is that my oncologist, Dr. B. made the following statement. "I'm worried. The graft isn't working."
For the record, I've engrafted, meaning that the graft has taken over my body and apparently killed the tumors. However, the graft doesn't appear to be producing blood cells. Thus, I get growth factor "G" at every visit, and I've been getting transfusions like I had a severed limb.
I like Dr. B. He's not rude, he's simply factual. He tells it like it is without pussy-footing around. There's no pie-in-the-sky pandering and false hope. For him to say, "I'm worried. The graft isn't working." makes me think the graft isn't working and he's worried. (Duh!)
I'm worried. Ed is worried.
Of course, Ed is being positive about it, hoping and maintaining his cheery disposition. He's already investigating my options for another transplant. But i have to be honest. I don't know what to say or do about an option like that, even if it's possible.
Even Jesus was only crucified once.
Thursday, December 18, 2008
A visit with Dr. B.
Wednesday was my first visit to Dr. B. after the transplant. I had forgotten how agreeable he is.
I asked to be taken off of hydration. We agreed on what I needed to do, and then he took me off. Simple as that. Now I just have to hold up my end of the bargain.
3 liters of fluids every day. That's a bit over 100 US fluid ounces. In terms of cans of soda, that's about 8.5. (No, I'm not going to drink 8 cans of sugared beverages.)
I got more "G" yesterday. My counts are sliding again and we don't exactly know why.
Anyway, after the appointment, I loaded the truck and drove to Vancouver in a HORRIBLE snowstorm. There was almost a foot of snow in some areas. Snowplows made the interstate passable, but it was tough. Much of the roadway was frozen and I got a few wiggles out of the truck. Snowfall in one section was so heavy it was like driving into a fog bank.
But I'm here in Vancouver and it's warm in the house.
I asked to be taken off of hydration. We agreed on what I needed to do, and then he took me off. Simple as that. Now I just have to hold up my end of the bargain.
3 liters of fluids every day. That's a bit over 100 US fluid ounces. In terms of cans of soda, that's about 8.5. (No, I'm not going to drink 8 cans of sugared beverages.)
I got more "G" yesterday. My counts are sliding again and we don't exactly know why.
Anyway, after the appointment, I loaded the truck and drove to Vancouver in a HORRIBLE snowstorm. There was almost a foot of snow in some areas. Snowplows made the interstate passable, but it was tough. Much of the roadway was frozen and I got a few wiggles out of the truck. Snowfall in one section was so heavy it was like driving into a fog bank.
But I'm here in Vancouver and it's warm in the house.
Sunday, December 14, 2008
Thursday thru Sunday
The SCCA gave me one unit of platelets on Thursday, as we expected. It was the first time I've ever gotten an A+ blood product, so it sorta marked a milestone for me.
Unfortunately I had a reaction (hives) about 3/4 of the way through the transfusion, so they dosed me up with Benadryl. If you've never had The Big B infused directly into your bloodstream, it will knock you on your butt in about 6 seconds. I slept in Room 23 until about 3pm. No hives afterward.
Since I was so groggy, I didn't get much done at home after I returned. I packed my computers and a few minor things, but none of my bigger jobs were accomplished.
So on Friday morning, I awoke to a ton of work. I had things that I needed to do before wandering north to Vancouver. I packed drugs, tools, clothes, some holiday things, my suitcase, and some sundry items into the truck and drove to the border.
Border crossings are getting weird. I have a Nexus card that allows for rapid transit across the border, but holy-moley! All I had to do this time was hold my Nexus card up while I continued to roll toward the guard shack. Green lights all the way. When I arrived at the guard, he asked where I was headed in Canada, then asked if I was carrying anything that I intended on leaving in Canada. I said "No". He said "Have a nice day". I'd love to see the technology they use for reading these cards, pulling up the data, and passing 'acceptables' through. I know they use vehicle weight records and they actively X-ray commercial vehicles. I wonder if I get a little dose every time I pass.
Anyway, I've been in Vancouver with Ed for two nights. Our landlord had a holiday party last night that we were invited to. Interesting group of people and lots of food. Unfortunately I wore out fairly early and we had to go home. The trip downstairs was arduous (not) since it had started to snow.
This morning we awoke with about 4 inches of the powdery white stuff on the ground. Ed's revelations about snow are pretty refreshing, just because he has no experience with it. He revels in the brightness and the quiet.
I'm going back to Seattle *early* tomorrow morning. I have a blood draw at 10:15 on Monday and an oncologist appointment on Wednesday.
My hope/plan is to return to Vancouver from the 18th through January 6. Now I just have to convince my oncologist of that.
Unfortunately I had a reaction (hives) about 3/4 of the way through the transfusion, so they dosed me up with Benadryl. If you've never had The Big B infused directly into your bloodstream, it will knock you on your butt in about 6 seconds. I slept in Room 23 until about 3pm. No hives afterward.
Since I was so groggy, I didn't get much done at home after I returned. I packed my computers and a few minor things, but none of my bigger jobs were accomplished.
So on Friday morning, I awoke to a ton of work. I had things that I needed to do before wandering north to Vancouver. I packed drugs, tools, clothes, some holiday things, my suitcase, and some sundry items into the truck and drove to the border.
Border crossings are getting weird. I have a Nexus card that allows for rapid transit across the border, but holy-moley! All I had to do this time was hold my Nexus card up while I continued to roll toward the guard shack. Green lights all the way. When I arrived at the guard, he asked where I was headed in Canada, then asked if I was carrying anything that I intended on leaving in Canada. I said "No". He said "Have a nice day". I'd love to see the technology they use for reading these cards, pulling up the data, and passing 'acceptables' through. I know they use vehicle weight records and they actively X-ray commercial vehicles. I wonder if I get a little dose every time I pass.
Anyway, I've been in Vancouver with Ed for two nights. Our landlord had a holiday party last night that we were invited to. Interesting group of people and lots of food. Unfortunately I wore out fairly early and we had to go home. The trip downstairs was arduous (not) since it had started to snow.
This morning we awoke with about 4 inches of the powdery white stuff on the ground. Ed's revelations about snow are pretty refreshing, just because he has no experience with it. He revels in the brightness and the quiet.
I'm going back to Seattle *early* tomorrow morning. I have a blood draw at 10:15 on Monday and an oncologist appointment on Wednesday.
My hope/plan is to return to Vancouver from the 18th through January 6. Now I just have to convince my oncologist of that.
Wednesday, December 10, 2008
Drug changes and another transfusion
They're changing my drugs again. Tomorrow I start on Dapsone and drop the Bactrim. They're also going to do a blood test tomorrow that might drop my FK506 (Tacrolimus) dosage. Afterward, I'm getting a platelet transfusion. I'm bruising WAY too much.
Depending on tomorrow's volume, that will mean I've taken 20 or 21 units of whole blood or platelets in less than 2 years. I don't know how many units of blood I was given during my intestinal surgery.
I'm starting to see why it's important for people to give blood.
Depending on tomorrow's volume, that will mean I've taken 20 or 21 units of whole blood or platelets in less than 2 years. I don't know how many units of blood I was given during my intestinal surgery.
I'm starting to see why it's important for people to give blood.
Answers
Anonymous asked:
Well, I'm curious.... I know from blood typing that O is universal, so I would suppose that you could accept O donations, and probably will not be giving up any that you have - whatever the mixture - but do you ever become fully one type over time?
My S-I-L is going to be finishing up his Auto during the next few weeks and looking to the Allo in about six months from a female relative... because she is a 10... thank goodness. But will he have hot flashes afterwards?
I know you're not a doctor, but thot you might be able to draw some conclusions based on your research...? Thanks
Yes, I can accept O+ or O- whole blood. I should get A+ or AB+ platelets when available.
Yes, I will probably be 100% A+ within 90 to 180 days. That's 6 to 9 months post transplant.
No, you don't actually change gender, ever. It's just that your blood chromosomes will show you to be the other sex when they start looking for the XX or XY chromosomes. It's sorta like putting Ford stickers on a Toyota. It'll still be a Toyota every day of the year, but it could be misidentified as a Ford if you only look at one aspect of the car.
Here is an article that covers the XX and XY sex identification chromosomes.
Well, I'm curious.... I know from blood typing that O is universal, so I would suppose that you could accept O donations, and probably will not be giving up any that you have - whatever the mixture - but do you ever become fully one type over time?
My S-I-L is going to be finishing up his Auto during the next few weeks and looking to the Allo in about six months from a female relative... because she is a 10... thank goodness. But will he have hot flashes afterwards?
I know you're not a doctor, but thot you might be able to draw some conclusions based on your research...? Thanks
Yes, I can accept O+ or O- whole blood. I should get A+ or AB+ platelets when available.
Yes, I will probably be 100% A+ within 90 to 180 days. That's 6 to 9 months post transplant.
No, you don't actually change gender, ever. It's just that your blood chromosomes will show you to be the other sex when they start looking for the XX or XY chromosomes. It's sorta like putting Ford stickers on a Toyota. It'll still be a Toyota every day of the year, but it could be misidentified as a Ford if you only look at one aspect of the car.
Here is an article that covers the XX and XY sex identification chromosomes.
Tuesday, December 09, 2008
Unusual thing.
I had my summary conference today. It recapped everything involved with the mini-allo transplant and the results. No real sense in recapping it here again, but the doctor did mention one thing I haven't thought about in months:
It seems I'm still male and will continue to be, because my donor was also male.
Sounds strange, but chromosome-indicated gender actually changes if there's a gender difference between the donor and the host.
It seems I'm still male and will continue to be, because my donor was also male.
Sounds strange, but chromosome-indicated gender actually changes if there's a gender difference between the donor and the host.
Monday, December 08, 2008
Some more numbers
I've gotten a few new numbers in the last couple of days.
I have osteopenia. The numbers are in the 1.50-1.65 range. Osteoporosis starts at about 2.5. The condition is an expected side effect of MM. It is treatable.
My cholesterol numbers are high, but just marginally. Many of the drugs I'm on are known to contribute to high cholesterol. Nobody is worried.
In direct contrast to the previously quoted 97% to 3% Donor to Andre peripheral blood content, it seems that my blood type is changing. I used to be O+ and I'm now 60% A+ and only 40% O+. It is expected that I'll be completely A+ within the year. Blood transfusions are gonna get weird. I was given a nice little card that says something to the effect of, "If you check this guys blood type, call us and we'll explain your results."
For the record, I've felt like garbage for the last two days. The GI tract is NOT HAPPY.
I have osteopenia. The numbers are in the 1.50-1.65 range. Osteoporosis starts at about 2.5. The condition is an expected side effect of MM. It is treatable.
My cholesterol numbers are high, but just marginally. Many of the drugs I'm on are known to contribute to high cholesterol. Nobody is worried.
In direct contrast to the previously quoted 97% to 3% Donor to Andre peripheral blood content, it seems that my blood type is changing. I used to be O+ and I'm now 60% A+ and only 40% O+. It is expected that I'll be completely A+ within the year. Blood transfusions are gonna get weird. I was given a nice little card that says something to the effect of, "If you check this guys blood type, call us and we'll explain your results."
For the record, I've felt like garbage for the last two days. The GI tract is NOT HAPPY.
The SCCA does it again.
It's Monday evening and I'm going to recap this last two days of foul ups at the SCCA. I have a "Summary Meeting" tomorrow and I'm going to make sure it's not a one sided conversation. They'll get my summary too.
On Friday at 11am, I was given my FOURTH schedule for the day. It covered the coming week (now this week).
On Sunday at 5:01 pm, I got a phone call from the facility checking to see why I'd missed my Sunday blood draw. There is no blood draw on my schedule. Further, what's the good of checking on a patient after the lab is closed? The caller indicated that I should wait until my scheduled 8:30 am Monday blood draw appointment and that my numbers were such that I would be getting a platelet transfusion sometime Monday after a "type and cross".
So I arrived for my blood test this morning and there was no "type and cross" ordered. Why had I been asked to block off enough time for a transfusion? I spent the next 2 hours there waiting for the most recent results so they could say, "Nope, no transfusion. Have a nice day."
So I went home and returned for my 3:30 "Summary conference". I arrived at 3 and was escorted to a conference room. I thought they were running ahead of schedule and was happy for the surprise. A man entered and gave me a synopsis of my blood results. We covered everything and I went home.
At 4:00, I got a call from scheduling asking "Where are you?". It seems the meeting I was granted WAS NOT the meeting I was there for, and further, that said meeting wasn't on my schedule at all.
They asked if I could return to the facility. I told them I could and that I could be there at about 4:20.
While I was on my way, they called back and told me to come in tomorrow. Three freaking trips to the SCCA in one day because they can't print a schedule.
I very nearly went POSTAL.
This, on top of "losing my poop" and asking for extra samples, doing emergency scheduling of blood tests on Sunday afternoons (within the last month), I really wonder what the heck has happened to the SCCA in the last 6 weeks or so.
I had a candid conversation with a person involved in advocacy. I was told that recently many patients have complained about disorganization, crowding, and scheduling issues, YET THERE IS NO INCREASE IN PATIENT INTAKE. In other words, the place is coming unglued, but it's not because they have more patients.
Sad. They do wonderful work when they work wonderfully.
On Friday at 11am, I was given my FOURTH schedule for the day. It covered the coming week (now this week).
On Sunday at 5:01 pm, I got a phone call from the facility checking to see why I'd missed my Sunday blood draw. There is no blood draw on my schedule. Further, what's the good of checking on a patient after the lab is closed? The caller indicated that I should wait until my scheduled 8:30 am Monday blood draw appointment and that my numbers were such that I would be getting a platelet transfusion sometime Monday after a "type and cross".
So I arrived for my blood test this morning and there was no "type and cross" ordered. Why had I been asked to block off enough time for a transfusion? I spent the next 2 hours there waiting for the most recent results so they could say, "Nope, no transfusion. Have a nice day."
So I went home and returned for my 3:30 "Summary conference". I arrived at 3 and was escorted to a conference room. I thought they were running ahead of schedule and was happy for the surprise. A man entered and gave me a synopsis of my blood results. We covered everything and I went home.
At 4:00, I got a call from scheduling asking "Where are you?". It seems the meeting I was granted WAS NOT the meeting I was there for, and further, that said meeting wasn't on my schedule at all.
They asked if I could return to the facility. I told them I could and that I could be there at about 4:20.
While I was on my way, they called back and told me to come in tomorrow. Three freaking trips to the SCCA in one day because they can't print a schedule.
I very nearly went POSTAL.
This, on top of "losing my poop" and asking for extra samples, doing emergency scheduling of blood tests on Sunday afternoons (within the last month), I really wonder what the heck has happened to the SCCA in the last 6 weeks or so.
I had a candid conversation with a person involved in advocacy. I was told that recently many patients have complained about disorganization, crowding, and scheduling issues, YET THERE IS NO INCREASE IN PATIENT INTAKE. In other words, the place is coming unglued, but it's not because they have more patients.
Sad. They do wonderful work when they work wonderfully.
Saturday, December 06, 2008
Elvis has NOT left the building!
Many of my readers expect my posts to dwindle now that I'm reportedly "healthy". I'll agree that I blog less when there's nothing novel happening, but I expect to switch from reactionary blogging to simple updates. Things still happen in life, and if I switch from panic mode to 'living life' mode, I can easily blog at least once a week.
Truth is, I'm always worried about the people whose blogs just STOP at some point. I think it would be a disservice to my readers if I didn't show some continuance, some perseverance, some reason to fight the battle, some purpose to it all. Maybe it's vain, but if I can help one person survive the mental war with cancer, it will have been worth all the hours of typing and introspection.
I know it's been therapeutic for me. I hope it continues to be so for others.
Truth is, I'm always worried about the people whose blogs just STOP at some point. I think it would be a disservice to my readers if I didn't show some continuance, some perseverance, some reason to fight the battle, some purpose to it all. Maybe it's vain, but if I can help one person survive the mental war with cancer, it will have been worth all the hours of typing and introspection.
I know it's been therapeutic for me. I hope it continues to be so for others.
Friday, December 05, 2008
Just the facts.
I got all the facts today. Here they are:
Bone marrow is 100% from the donor.
Peripheral blood is 97% from the donor. (Only 3% "Andre")
Peripheral blood percentage may be higher than 97% because of transfusions.
M-spike, serum proteins are at undetectable levels by electophoresis.
M-spike, serum proteins are at minuscule levels by immunofixation.
CMV is inactive.
GVHD is not flaring.
Tapering off some of the drugs will take 6+ months. (MMF and Tacrolimus).
So I'm really gonna be released into the free world on December 10th. Certainly there are issues, such as drug dependency, potential GVHD flaring, and infection due to severe immunosuppression.
Ultimately, this is as good a result as we could have hoped for. I'm tired, frustrated, and HAPPY.
Bone marrow is 100% from the donor.
Peripheral blood is 97% from the donor. (Only 3% "Andre")
Peripheral blood percentage may be higher than 97% because of transfusions.
M-spike, serum proteins are at undetectable levels by electophoresis.
M-spike, serum proteins are at minuscule levels by immunofixation.
CMV is inactive.
GVHD is not flaring.
Tapering off some of the drugs will take 6+ months. (MMF and Tacrolimus).
So I'm really gonna be released into the free world on December 10th. Certainly there are issues, such as drug dependency, potential GVHD flaring, and infection due to severe immunosuppression.
Ultimately, this is as good a result as we could have hoped for. I'm tired, frustrated, and HAPPY.
Thursday, December 04, 2008
Day 97 and 98
Today is Day 97 since my mini-allo transplant. Everything is counted one day at a time on Planet Transplant, and day 100 is a supposed milestone. (So are 120, 150 and 180.)
When you think about it in these simplistic terms, it's rather ominous. Why would you count each individual day as a goal / objective if the risk wasn't insanely high?
Anyway, tomorrow is Day 98 and I get some test results. Serum calcium and my M-spike numbers will be provided. They'll tell the tale. No cancer was found in my bone marrow biopsy, but these last two tests will tell us if it seems to be gone everywhere. Notice I used the term "seems". We'll still never know exactly. The Sword of Damocles is a reality for us.
Basically, I'll get one of three different answers tomorrow:
1) The cancer appears to be in remission.
2) The cancer is trending toward remission.
3) The cancer is still active and seems to be returning.
In any of these cases, I still have GVHD. That may eventually decline with drug changes and my body's willingness to overcome issues. It's a process.
Regardless, I'll post more tomorrow.
When you think about it in these simplistic terms, it's rather ominous. Why would you count each individual day as a goal / objective if the risk wasn't insanely high?
Anyway, tomorrow is Day 98 and I get some test results. Serum calcium and my M-spike numbers will be provided. They'll tell the tale. No cancer was found in my bone marrow biopsy, but these last two tests will tell us if it seems to be gone everywhere. Notice I used the term "seems". We'll still never know exactly. The Sword of Damocles is a reality for us.
Basically, I'll get one of three different answers tomorrow:
1) The cancer appears to be in remission.
2) The cancer is trending toward remission.
3) The cancer is still active and seems to be returning.
In any of these cases, I still have GVHD. That may eventually decline with drug changes and my body's willingness to overcome issues. It's a process.
Regardless, I'll post more tomorrow.
Tuesday, December 02, 2008
Communication skills.
So I told you the SCCA lost my poo. It turns out they didn't. My results were in the system and they wanted to know why I submitted a second sample on Monday.
I rolled my eyes and explained that I had nothing better to do than crap in a a pair of 4 ounce cups twice a week. I also admitted to shoplifting enteric kits to support my habit. After all, the little "hats" sell for big bucks to local gay theater groups who need wardrobe simulations of a nun's headgear.
As punishment for abusing the system, they made me do another nasal wash, even though the symptoms haven't changed. Then they gave me another shot of "G" in spite of yesterday's transfusion.
Then I asked them what the plan was, because nobody has shared it with me even though I've asked. Apparently they've decided to graduate me on December 10th and release me to my regular oncologist (who only sees patients on Wednesdays now).
I made the mistake of opening my mouth again and mentioned that I wanted to go to Vancouver on December 13 for a few days. Apparently they think midtown Vancouver is somewhere in Kenya.
"What are you going to do if you get sick?"
"Go to the hospital. The closest one is 4 blocks and the biggest one is 6 blocks."
"Well, as long as you have a plan."
Ok, so here's the plan, just for the record.
PLAN OBJECTIVE: Don't die.
CONTINGENCIES:
1) Try not to get sick.
2) If you get sick, go to the hospital with Ed and get help.
Golly, I'm glad I wrote that down. The complexities are gonna require me to follow a script.
It's painfully obvious I need a vacation from the program. I've been on the leash too long. 27 months of uncertainty is stressing me out. Several months of living alone aren't helping. I wanna go HOME and that's wherever Ed is.
(BTW - we're still not "certain". My M-spike results won't be back until this Friday, and some of my serum results aren't what I'd hoped for. We're back to hoping for the best but preparing for the worst.)
I rolled my eyes and explained that I had nothing better to do than crap in a a pair of 4 ounce cups twice a week. I also admitted to shoplifting enteric kits to support my habit. After all, the little "hats" sell for big bucks to local gay theater groups who need wardrobe simulations of a nun's headgear.
As punishment for abusing the system, they made me do another nasal wash, even though the symptoms haven't changed. Then they gave me another shot of "G" in spite of yesterday's transfusion.
Then I asked them what the plan was, because nobody has shared it with me even though I've asked. Apparently they've decided to graduate me on December 10th and release me to my regular oncologist (who only sees patients on Wednesdays now).
I made the mistake of opening my mouth again and mentioned that I wanted to go to Vancouver on December 13 for a few days. Apparently they think midtown Vancouver is somewhere in Kenya.
"What are you going to do if you get sick?"
"Go to the hospital. The closest one is 4 blocks and the biggest one is 6 blocks."
"Well, as long as you have a plan."
Ok, so here's the plan, just for the record.
PLAN OBJECTIVE: Don't die.
CONTINGENCIES:
1) Try not to get sick.
2) If you get sick, go to the hospital with Ed and get help.
Golly, I'm glad I wrote that down. The complexities are gonna require me to follow a script.
It's painfully obvious I need a vacation from the program. I've been on the leash too long. 27 months of uncertainty is stressing me out. Several months of living alone aren't helping. I wanna go HOME and that's wherever Ed is.
(BTW - we're still not "certain". My M-spike results won't be back until this Friday, and some of my serum results aren't what I'd hoped for. We're back to hoping for the best but preparing for the worst.)
Sunday, November 30, 2008
Inconvenience
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.
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.
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.
Thursday, October 30, 2008
....and counting toward the future.
I just had an email exchange with an old friend. I thought a few things in the email might be relevant here. Here's the tally.
"To be honest, staying ahead of the cancer game is a task..... a duty if you will. I have my alarm set at 7am so I can start my first round of meds. Then I have another round at 9am. Sometime around there I need to start two infusions (1.25 liters of fluid piped directly into my bloodstream via a central venous catheter [Hickman]). Then I have more meds at 3, more at 6, another infusion of 250 ml, and my last round of drugs at 11pm.
Some of the drugs prevent me from eating dairy during a 3 hour period (3 times a day). Some should be taken on an empty stomach. Some should be taken with food. Some make me absolutely staggering drunk. Some raise my BP. Some lower my BP so the drugs that raise it don't kill me. Another is a topical steroid for my GI that I eat on a cookie 4 times a day.
I just counted. I take 38 individual pills, 4 cookies, 3 infusions, and two topical ointments a day. Every day. That number increases if I take anything for pain. Generally I don't, but sometimes a couple of Tylenol come in handy.
I really try not to complain. I feel pretty decent in general and my condition has improved since the most recent transplant. I'm getting things done and I'm taking care of a couple of those creative projects you know I enjoy. I'm also working on the 2WheelTiger.com site for the near future. If I haven't told you about 2WheelTiger, it's going to be a travel and adventure site based upon what's going on with yours truly. The objective is to get people to live before they die. It'll be a contribution/donation site. I have a developer working on it as we speak. So I guess what I'm saying is that I'm not giving up. I'm actually looking forward to the future and making plans.
Thanks for your concern. It means a lot to me."
Anyway, I thought I'd share.
"To be honest, staying ahead of the cancer game is a task..... a duty if you will. I have my alarm set at 7am so I can start my first round of meds. Then I have another round at 9am. Sometime around there I need to start two infusions (1.25 liters of fluid piped directly into my bloodstream via a central venous catheter [Hickman]). Then I have more meds at 3, more at 6, another infusion of 250 ml, and my last round of drugs at 11pm.
Some of the drugs prevent me from eating dairy during a 3 hour period (3 times a day). Some should be taken on an empty stomach. Some should be taken with food. Some make me absolutely staggering drunk. Some raise my BP. Some lower my BP so the drugs that raise it don't kill me. Another is a topical steroid for my GI that I eat on a cookie 4 times a day.
I just counted. I take 38 individual pills, 4 cookies, 3 infusions, and two topical ointments a day. Every day. That number increases if I take anything for pain. Generally I don't, but sometimes a couple of Tylenol come in handy.
I really try not to complain. I feel pretty decent in general and my condition has improved since the most recent transplant. I'm getting things done and I'm taking care of a couple of those creative projects you know I enjoy. I'm also working on the 2WheelTiger.com site for the near future. If I haven't told you about 2WheelTiger, it's going to be a travel and adventure site based upon what's going on with yours truly. The objective is to get people to live before they die. It'll be a contribution/donation site. I have a developer working on it as we speak. So I guess what I'm saying is that I'm not giving up. I'm actually looking forward to the future and making plans.
Thanks for your concern. It means a lot to me."
Anyway, I thought I'd share.
Wednesday, October 29, 2008
Tuesday's 10+ hour day.
Yesterday I had my usual Tuesday appointments at the SCCA. Little did I know how it would turn out.
I arrived at 9a for my blood draw. I think it was only 8 vials this time. Then I went upstairs to have a meeting with Nutrition. There's been no change in my GI since Friday. Hmmmmm... time for more tests, including the threat of renewed spelunking from each end. Fortunately the spelunkers declined. Then came time for the ID doctor to poke her head in. She said I was probably doing fine from her side, but that we needed to decide whether I have GVHD or CMV (or both). She wanted some tests too. You know the tests. They're the ones you do privately. Nobody wants to help you. You're on your own, fella!
And then it was time to meet with the team. Would we decrease the steroids? Would we increase them? Decision: Do nothing. Keep them where they are and we'll see you on Friday.
Then came the shocker. "Your hematocrit is only 25. When would you like your transfusion? Today or tomorrow?" I chose "today" (Tuesday). Let's finish this little fiasco in one move. Don't drag it out.
So I went downstairs to get another blood test, a type and cross, to see if my blood type was the same as it used to be. It was. O+
At 3p, they hooked me up. At 7:15p, they disconnected me and let me go home. Two units of whole blood.
I was grouchy for some reason. I've been slightly tired all day. Hopefully tomorrow will be a bit more productive now that I have some red blood cells again.
I arrived at 9a for my blood draw. I think it was only 8 vials this time. Then I went upstairs to have a meeting with Nutrition. There's been no change in my GI since Friday. Hmmmmm... time for more tests, including the threat of renewed spelunking from each end. Fortunately the spelunkers declined. Then came time for the ID doctor to poke her head in. She said I was probably doing fine from her side, but that we needed to decide whether I have GVHD or CMV (or both). She wanted some tests too. You know the tests. They're the ones you do privately. Nobody wants to help you. You're on your own, fella!
And then it was time to meet with the team. Would we decrease the steroids? Would we increase them? Decision: Do nothing. Keep them where they are and we'll see you on Friday.
Then came the shocker. "Your hematocrit is only 25. When would you like your transfusion? Today or tomorrow?" I chose "today" (Tuesday). Let's finish this little fiasco in one move. Don't drag it out.
So I went downstairs to get another blood test, a type and cross, to see if my blood type was the same as it used to be. It was. O+
At 3p, they hooked me up. At 7:15p, they disconnected me and let me go home. Two units of whole blood.
I was grouchy for some reason. I've been slightly tired all day. Hopefully tomorrow will be a bit more productive now that I have some red blood cells again.
Sunday, October 26, 2008
I guess it's been a week again.
My friend PS sent me an email indicating I'd been lax again with my postings. I hadn't realized until this very minute that it's been a week. Wow, time flies when you're having fun!
I'm back on a regular schedule at the SCCA. Tuesdays and Fridays are the norm. Drugs get changed every couple of days because they make some determination based on the blood counts. Some drugs go up, some go down. The total load is still pretty big, but the type of drugs changes. Basically they're trying to lessen the load on the kidneys.
The good news on Friday was that my kidney function numbers are in the normal range. We're staying ahead of potential kidney damage.
The bad news Friday was that if my GVHD symptoms continue, they're going to increase my steroid load to 80mg per day from 40mg/day. Not looking forward to that.
A dietitian's analysis suggests that some of my lower GI troubles are caused by the inability of my small intestine to absorb fats. This puts undigested fats into my large intestine, and the result is, shall I say, "often urgent". And so, I'm supposed to change my diet toward extremely lean proteins and completely away from spicy foods.
Fish, flank steak, extremely lean pork, beans. Yup, nothing quite like Fajitas with no seasoning, no onions, no peppers. Might as well be beef jerky in the Twilight Zone. I had Pho with meatball and rare beef today. I added no mint, bean sprouts, peppers, or cilantro. 30 minutes after my meal, I was DYING. There was an emergency going on under my belt. Code 3. We actually stopped at the local hospital so I could resolve the problem.
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.
Overall, my energy level has been pretty good. I've been doing a few small modification projects on the motorcycle. They exercise the brain, make my body move in untypical ways, and give me some sense of accomplishment. I take the projects slowly, don't lift any heavy weights, and enjoy myself 3-4 hours every day in the garage.
I call it progress. Getting back to my #1 hobby is good for me.
I'm back on a regular schedule at the SCCA. Tuesdays and Fridays are the norm. Drugs get changed every couple of days because they make some determination based on the blood counts. Some drugs go up, some go down. The total load is still pretty big, but the type of drugs changes. Basically they're trying to lessen the load on the kidneys.
The good news on Friday was that my kidney function numbers are in the normal range. We're staying ahead of potential kidney damage.
The bad news Friday was that if my GVHD symptoms continue, they're going to increase my steroid load to 80mg per day from 40mg/day. Not looking forward to that.
A dietitian's analysis suggests that some of my lower GI troubles are caused by the inability of my small intestine to absorb fats. This puts undigested fats into my large intestine, and the result is, shall I say, "often urgent". And so, I'm supposed to change my diet toward extremely lean proteins and completely away from spicy foods.
Fish, flank steak, extremely lean pork, beans. Yup, nothing quite like Fajitas with no seasoning, no onions, no peppers. Might as well be beef jerky in the Twilight Zone. I had Pho with meatball and rare beef today. I added no mint, bean sprouts, peppers, or cilantro. 30 minutes after my meal, I was DYING. There was an emergency going on under my belt. Code 3. We actually stopped at the local hospital so I could resolve the problem.
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.
Overall, my energy level has been pretty good. I've been doing a few small modification projects on the motorcycle. They exercise the brain, make my body move in untypical ways, and give me some sense of accomplishment. I take the projects slowly, don't lift any heavy weights, and enjoy myself 3-4 hours every day in the garage.
I call it progress. Getting back to my #1 hobby is good for me.
Sunday, October 19, 2008
The complaints are becoming more frequent.
Apparently I don't blog often enough. I'm getting complaints. Well, maybe they're not really complaints, but they're questions. "How are you doing? You haven't blogged in a long time!"
And so, here's the latest.
As of this morning, the load on my kidneys has been significantly reduced. We can rule out the risk of serious kidney damage for the time being.
My energy levels are at a pretty low level. Muscular strength is poor.
Blood pressure is good. Pulse is good.
Upper and lower GI issues are significantly reduced. I'm eating quite a bit and have actually picked up one kilo this week. Unfortunately the weight gain has been limited to the single kilo.
Steroids have been typical. I have peripheral edema (fat ankles and knees). Appetite is good, but taste and smell are still abominable.
I don't sleep well unless the room is over 80F (26.6C). I get muscular cramps in my feet, legs, and hands.
BUT, I'm doing better than I was last week and this gives me hope. At least I'm not going backward. It's not easy, but I'm moving forward.
And so, here's the latest.
As of this morning, the load on my kidneys has been significantly reduced. We can rule out the risk of serious kidney damage for the time being.
My energy levels are at a pretty low level. Muscular strength is poor.
Blood pressure is good. Pulse is good.
Upper and lower GI issues are significantly reduced. I'm eating quite a bit and have actually picked up one kilo this week. Unfortunately the weight gain has been limited to the single kilo.
Steroids have been typical. I have peripheral edema (fat ankles and knees). Appetite is good, but taste and smell are still abominable.
I don't sleep well unless the room is over 80F (26.6C). I get muscular cramps in my feet, legs, and hands.
BUT, I'm doing better than I was last week and this gives me hope. At least I'm not going backward. It's not easy, but I'm moving forward.
Wednesday, October 15, 2008
Change your partner, do-si-do!
For my British fans, the title is a reference to a square dancing instruction.
The SCCA did a blood test on me this morning to track what they feared from Tuesday. The results are quite simple. My kidneys are overloaded. This can lead to kidney failure, dialysis, death. Not cool.
So they've increased my hydration to 1.5 liters/day. Yipee, 6 hours on the pump every day. They've changed me to Gancyclovir instead of Acyclovir (deliverable in another hour long infusion.) They've reduced some of my other drugs by 50% and they've eliminated others completely for the short-term.
Meanwhile, I've been awake for 36 hours because of the steroid changes from Tuesday. I know my body and brain will settle on this new norm, but it's always a little slice of hell when I'm thrown onto high dose 'roids.
Do I feel like crap? You can bet money on it. It's just highly excitable crap.
The SCCA did a blood test on me this morning to track what they feared from Tuesday. The results are quite simple. My kidneys are overloaded. This can lead to kidney failure, dialysis, death. Not cool.
So they've increased my hydration to 1.5 liters/day. Yipee, 6 hours on the pump every day. They've changed me to Gancyclovir instead of Acyclovir (deliverable in another hour long infusion.) They've reduced some of my other drugs by 50% and they've eliminated others completely for the short-term.
Meanwhile, I've been awake for 36 hours because of the steroid changes from Tuesday. I know my body and brain will settle on this new norm, but it's always a little slice of hell when I'm thrown onto high dose 'roids.
Do I feel like crap? You can bet money on it. It's just highly excitable crap.
Tuesday, October 14, 2008
A visit to "the office".
I spent this morning visiting the SCCA folk again. Since I had a rough weekend (GI bloating and pain), they changed my meds. Prednisone steroids have gone from 10mg to 40mg per day. I expect my dearly departed great grandmother to take up ethereal residence in my ankles again.
But this was one of the days I noticed the cyclic nature of the cancer beast as it relates to human interaction. Because people prefer to be seen at a particular time of day, and because of scheduling requirements at the SCCA, waiting rooms tend to be filled with the same people week after week. I see the same faces and nod the usual nods on Tuesdays and Fridays. Funny thing is, I've never talked to any of them. Most of them only talk about their cancer, and that's not my cuppa when I meet a new person.
But I'll tell you some stories about the people I know: Obviously no real names.
"R" is the unabashedly gay phlebotomist who makes a special effort to get me as his patient. We talk about his boyfriend and his plans for the next year. Somehow, it makes the blood-letting more enjoyable.
"G" is my team nurse. She's one of those people who always has a good attitude. I like her.
And then, there are the patients: (Who I've never spoken to, but I listen a lot.)
There's the gaunt young lady with circulatory problems. Her hands turn dark when she stands, and those are her good days. She's probably 17-20 years old. I wish her luck and a speedy recovery.
There are all manner of "old folk" like me. Husband and wife teams who deal with "the job" in whichever way they can. 99% of these people have a positive attitude about their recovery and I think most of them have accepted their extra time as a gift.
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.
But this was one of the days I noticed the cyclic nature of the cancer beast as it relates to human interaction. Because people prefer to be seen at a particular time of day, and because of scheduling requirements at the SCCA, waiting rooms tend to be filled with the same people week after week. I see the same faces and nod the usual nods on Tuesdays and Fridays. Funny thing is, I've never talked to any of them. Most of them only talk about their cancer, and that's not my cuppa when I meet a new person.
But I'll tell you some stories about the people I know: Obviously no real names.
"R" is the unabashedly gay phlebotomist who makes a special effort to get me as his patient. We talk about his boyfriend and his plans for the next year. Somehow, it makes the blood-letting more enjoyable.
"G" is my team nurse. She's one of those people who always has a good attitude. I like her.
And then, there are the patients: (Who I've never spoken to, but I listen a lot.)
There's the gaunt young lady with circulatory problems. Her hands turn dark when she stands, and those are her good days. She's probably 17-20 years old. I wish her luck and a speedy recovery.
There are all manner of "old folk" like me. Husband and wife teams who deal with "the job" in whichever way they can. 99% of these people have a positive attitude about their recovery and I think most of them have accepted their extra time as a gift.
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.
Monday, October 13, 2008
Graft vs Host Disease (GVHD)
Graft vs Tumor (GVT)
At the request of a reader, I'm going to discuss Graft vs Host Disease (GVHD) and Graft vs Tumor (GVT) as they relate to allogeneic or mini-allo transplants. This is gonna be pretty dry. It's pretty difficult to be witty on these subjects.
I guess the first step is going to be defining what the words mean.
GRAFT - The graft is the stem cells I got from the donor.
HOST - The host is the patient. In this case, me.
TUMOR - The tumor is the cancer cells in our bone marrow.
Now that the definitions are clear, allow me to go back over the procedure(s) that lead to a mini-allo:
1) My bone marrow was ablated (significantly reduced) by chemotherapy and total body irradiation (TBI). This had the net effect of killing an estimated 90% of my bone marrow cells. (An autologous transplant kills 100% of the cells.)
2) Prior to #1 above, a kind volunteer went thru considerable discomfort to create a bunch of excess bone marrow stem cells. This graft was collected and shipped to my hospital.
3) The donor cells (the graft) were infused into my bloodstream.
4) The donor cells eventually engrafted, meaning that they began to grow and reproduce inside my bones. In other words, they took up residence in my body. As of my last test, 100% of the cells in my marrow belong to the donor. There are no "Andre cells" left in the marrow. (Note that this is 30 days into the process and I'm far from the end of the 120 day observation period.)
Now, I hope it's clear that the whole purpose of this is to make the donor cells combat the tumor(s). The donor cells are supposed to find the myeloma cells and kill them. The donor cells do this by recognizing the myeloma cells as foreign cells and launching one of many "kill" methods. (I asked Ed and the actual biology is pretty complex and not really relevant.)
When the graft kills the tumor, you have GVT with a positive outcome. GVT - Graft vs Tumor. It's the objective and a good thing.
But GVT and GVHD are a bit like love and marriage. "You can't have one without the other."
If the graft (donated cells) are able to recognize the myeloma cells as foreign, they'll also recognize every cell in my body as foreign! The same graft that is killing the tumors is also trying to kill me as if I were a giant infection it stumbled across. This is the nature of Graft vs Host Disease (GVHD).
In order to get the GVT we want, we have to accept there will be some GVHD.
Common symptoms of GVHD tend to appear first in the more sensitive parts of the body. This would be the upper and lower GI tract, the eyes, and the skin.
GVHD is managed by three major drugs. MMF (mycophenolate mofetil or CellCept), tacrolimus or cyclosporine, and steroids. These three drugs fall into the category of anti-rejection drugs and their purpose is to prevent the host from rejecting the graft, and prevent the graft from attacking the host.
Yes, I have GVHD and it's manageable. Will it remain so? We don't know, because while 100% of the cells in my marrow are the donors, this is not the case in my bloodstream yet. It takes some time for my cells to die of old age and be replaced with the donor cells. It's entirely possible that, as the quantity of graft cells increases and the host cells decrease, the attack on my body will increase.
On the other hand, the ultimate objective is to use the anti-rejection drugs to buy enough time for the graft and the host to learn to live with one another (immune tolerance). There are LOTS of mini-allo patients who have been alive for years after their transplant. Eventually, the GVHD seems to get easier.
I guess the first step is going to be defining what the words mean.
GRAFT - The graft is the stem cells I got from the donor.
HOST - The host is the patient. In this case, me.
TUMOR - The tumor is the cancer cells in our bone marrow.
Now that the definitions are clear, allow me to go back over the procedure(s) that lead to a mini-allo:
1) My bone marrow was ablated (significantly reduced) by chemotherapy and total body irradiation (TBI). This had the net effect of killing an estimated 90% of my bone marrow cells. (An autologous transplant kills 100% of the cells.)
2) Prior to #1 above, a kind volunteer went thru considerable discomfort to create a bunch of excess bone marrow stem cells. This graft was collected and shipped to my hospital.
3) The donor cells (the graft) were infused into my bloodstream.
4) The donor cells eventually engrafted, meaning that they began to grow and reproduce inside my bones. In other words, they took up residence in my body. As of my last test, 100% of the cells in my marrow belong to the donor. There are no "Andre cells" left in the marrow. (Note that this is 30 days into the process and I'm far from the end of the 120 day observation period.)
Now, I hope it's clear that the whole purpose of this is to make the donor cells combat the tumor(s). The donor cells are supposed to find the myeloma cells and kill them. The donor cells do this by recognizing the myeloma cells as foreign cells and launching one of many "kill" methods. (I asked Ed and the actual biology is pretty complex and not really relevant.)
When the graft kills the tumor, you have GVT with a positive outcome. GVT - Graft vs Tumor. It's the objective and a good thing.
But GVT and GVHD are a bit like love and marriage. "You can't have one without the other."
If the graft (donated cells) are able to recognize the myeloma cells as foreign, they'll also recognize every cell in my body as foreign! The same graft that is killing the tumors is also trying to kill me as if I were a giant infection it stumbled across. This is the nature of Graft vs Host Disease (GVHD).
In order to get the GVT we want, we have to accept there will be some GVHD.
Common symptoms of GVHD tend to appear first in the more sensitive parts of the body. This would be the upper and lower GI tract, the eyes, and the skin.
GVHD is managed by three major drugs. MMF (mycophenolate mofetil or CellCept), tacrolimus or cyclosporine, and steroids. These three drugs fall into the category of anti-rejection drugs and their purpose is to prevent the host from rejecting the graft, and prevent the graft from attacking the host.
Yes, I have GVHD and it's manageable. Will it remain so? We don't know, because while 100% of the cells in my marrow are the donors, this is not the case in my bloodstream yet. It takes some time for my cells to die of old age and be replaced with the donor cells. It's entirely possible that, as the quantity of graft cells increases and the host cells decrease, the attack on my body will increase.
On the other hand, the ultimate objective is to use the anti-rejection drugs to buy enough time for the graft and the host to learn to live with one another (immune tolerance). There are LOTS of mini-allo patients who have been alive for years after their transplant. Eventually, the GVHD seems to get easier.
Sunday, October 12, 2008
So it's been a while
My brother called me today and mentioned I hadn't blogged in a while. His assumption was that everything must be going well because it's my habit to be quiet unless I have something to whine about.
He's right.
First things first. My brother's an actor along the same lines as I was a motorcycle racer. Loyal, convicted, dedicated, but not professional. In the pyramid of pass times, Rick and I are on the lower levels. We stand far from the peak.
But things seem to be changing recently. Seems he has to be in Austin, TX tomorrow morning. His driver will pick him up and deliver him to make-up and costuming. For two days he'll be shooting an HBO movie with Claire Danes.
I'm proud of him. Years of hard work and dedication are starting to pay off. Bravo!
But back to the subject at hand: How am I doing? I'm still losing a kilo every week. I get full easily. I don't like the taste of anything I put in my mouth. I don't like the GI discomfort brought on by food in my system, and I certainly don't enjoy the end result of digestion when it's all said and done.
In the real world, I'm getting worse every day, one millimeter at a time.
See, I'm being weened of the drugs that make me feel good. The intention is to allow my body to produce normal adrenaline and endorphines so I feel genuinely normal. The trouble is that the GVHD (Graft vs Host Disease) is creeping forward daily, so every centimeter I move forward and away from the drugs, the GVHD takes away.
Side effects of the changes come mainly in the form of nocturnal muscle cramps in my feet and shins. My hands cramp too.
On the other hand, I look good. I look healthy. Most people tell me I don't look like a cancer patient. I take that to mean I'm progressing as well as can be expected.
Side Note: Ed had a seminar in Seattle most of last week. He spent 6 days with me, went to Vancouver for two days and is now back in Seattle. Monday is Canadian Thanksgiving. We've been together 10 out of 12 days.
He's right.
First things first. My brother's an actor along the same lines as I was a motorcycle racer. Loyal, convicted, dedicated, but not professional. In the pyramid of pass times, Rick and I are on the lower levels. We stand far from the peak.
But things seem to be changing recently. Seems he has to be in Austin, TX tomorrow morning. His driver will pick him up and deliver him to make-up and costuming. For two days he'll be shooting an HBO movie with Claire Danes.
I'm proud of him. Years of hard work and dedication are starting to pay off. Bravo!
But back to the subject at hand: How am I doing? I'm still losing a kilo every week. I get full easily. I don't like the taste of anything I put in my mouth. I don't like the GI discomfort brought on by food in my system, and I certainly don't enjoy the end result of digestion when it's all said and done.
In the real world, I'm getting worse every day, one millimeter at a time.
See, I'm being weened of the drugs that make me feel good. The intention is to allow my body to produce normal adrenaline and endorphines so I feel genuinely normal. The trouble is that the GVHD (Graft vs Host Disease) is creeping forward daily, so every centimeter I move forward and away from the drugs, the GVHD takes away.
Side effects of the changes come mainly in the form of nocturnal muscle cramps in my feet and shins. My hands cramp too.
On the other hand, I look good. I look healthy. Most people tell me I don't look like a cancer patient. I take that to mean I'm progressing as well as can be expected.
Side Note: Ed had a seminar in Seattle most of last week. He spent 6 days with me, went to Vancouver for two days and is now back in Seattle. Monday is Canadian Thanksgiving. We've been together 10 out of 12 days.
Tuesday, October 07, 2008
SCCA Team Visit
I went to my usual Tuesday meeting at the SCCA today. Apparently I'm doing well enough that they'll probably put me on a once per week schedule soon. Very little to report other than I'm still developing the "new normal", whatever that may be.
Today was bright and sunny. It's amazing how good I feel on days like this when compared to the average Seattle day.
Today was bright and sunny. It's amazing how good I feel on days like this when compared to the average Seattle day.
Monday, October 06, 2008
Monday night
Ed's attending a seminar in Seattle this week, so we've been spending a lot of time together. It's rather like being a real couple again.
The steroid taper has left me in the doldrums. Energy levels are sub-par and general malaise is up. I'm trying to get used to another "new normal".
Basically everything is OK here.
The steroid taper has left me in the doldrums. Energy levels are sub-par and general malaise is up. I'm trying to get used to another "new normal".
Basically everything is OK here.
Sunday, October 05, 2008
Thursday, October 02, 2008
A bit of pain
Today was the penultimate step in my prednisone taper. I only got 10mg today. Yesterday I took off my Fentanyl patch for pain. I've felt like crap all day. I didn't even fix my tail.
Been posting and surfing and writing all day. I have cramps in my hands right now.
Tomorrow is physical therapy and another team meeting with the new doc on rotation.
Been posting and surfing and writing all day. I have cramps in my hands right now.
Tomorrow is physical therapy and another team meeting with the new doc on rotation.
Wednesday, October 01, 2008
A moderate day.
Today was just an average day. I felt OK, had moderate amounts of energy, and did a few things around the house.
I also changed the oil and filter on the motorcycle.
For what it's worth, I'm over the argument with Doctor D. I'm going to let her lack of people skills pass under the bridge unless there are repurcussions at my Friday meeting with the new doctor on rotation. I can choose to carry a burden or I can choose to be the free man I am.
This evening I went out for Pho with my friend Linda. My GI elected to misbehave at the end of dinner, and I wanted to thank Linda for being patient with me. She's a good soul.
Tomorrow's plan? I have to do some sewing. My tiger ears and tail need maintenance. 5000 miles (8000km) and the thread wears out!
Anyway, life moves forward thru the miracle of modern chemistry.
I also changed the oil and filter on the motorcycle.
For what it's worth, I'm over the argument with Doctor D. I'm going to let her lack of people skills pass under the bridge unless there are repurcussions at my Friday meeting with the new doctor on rotation. I can choose to carry a burden or I can choose to be the free man I am.
This evening I went out for Pho with my friend Linda. My GI elected to misbehave at the end of dinner, and I wanted to thank Linda for being patient with me. She's a good soul.
Tomorrow's plan? I have to do some sewing. My tiger ears and tail need maintenance. 5000 miles (8000km) and the thread wears out!
Anyway, life moves forward thru the miracle of modern chemistry.
Stressed.
My little toe-to-toe with Doctor D. happened about 13 hours ago. I'm still miffed. I'm still tweaked, and I'm still awake. She's not good for patients.
Tuesday, September 30, 2008
Good results, but LIVID
First, the good news. The results of the bone marrow biopsy were excellent. Apparently the marrow is showing 'negative' for malignancies and the marrow cells are 100% donor cells. It looks like it's going to work. The next 90 days will tell the tale of GVHD and side effects.
But I actually fired my doctor today. Yup, asked her to stop talking and leave the room. No, I wasn't on steroids.
See, I'm perfectly honest and candid with my docs. I tell them everything that goes on so that they'll have answers and reasons in case something happens. So I told them about my little escape to Vancouver on Sunday. I told them I forgot my infusion tubing. I admitted to playing hookie.
And the doctor went OFF! Their rules say I'm supposed to be within 30 minutes of their facility at all times. Their rules say I'm supposed to have a full time caregiver at my side at all times. Yes, they're talking about having someone sit beside me, hovering like a bat in case I fall down going to the bathroom. That's stupid.
And then she said the classic words, "If we'd known you weren't going to follow the rules precisely, we wouldn't have done the transplant."
This translates to, "If we'd known you wouldn't let us own you, we would have let you die of your disease."
Sounds like she's trying to cover a liability problem with another liability problem.
The conversation digressed into a random ramble about how I was putting the general public in danger's way by "zipping around town on my motorcycle" (obvious prejudice). There was much more interest in having me drive my 2 ton truck around in traffic, as if that would be safer for the masses.
That's when I told her I was happy she was going off rotation and that she could leave. Her response was, "I have a right to be here with one of my employees."
So I explained that I'd be happy to leave, as her lectures would not be necessary any longer. She would not win, she could not win, and neither she nor the facility could fire me. I went so far as to say, "You're not my mother."
Hell, she even said something about "all we do for you" as if this were a pro bono charity event.
No, it was not a good interaction, but how ABSOLUTELY PIOUS can a doctor be? Sanctimonious witch!
Quite frankly, Doctor D has always been a cold, stiff, impersonal clinician since the day Ed and I met her. Neither of us like her. She doesn't show up for team appointments. When she does, her general demeanor is one of superiority and aloofness. She's off-putting. Now I know she's an insufferable nag.
Interacting with this woman raised my blood pressure and actually gave me hand tremors. She's not good for a patient's health.
But I actually fired my doctor today. Yup, asked her to stop talking and leave the room. No, I wasn't on steroids.
See, I'm perfectly honest and candid with my docs. I tell them everything that goes on so that they'll have answers and reasons in case something happens. So I told them about my little escape to Vancouver on Sunday. I told them I forgot my infusion tubing. I admitted to playing hookie.
And the doctor went OFF! Their rules say I'm supposed to be within 30 minutes of their facility at all times. Their rules say I'm supposed to have a full time caregiver at my side at all times. Yes, they're talking about having someone sit beside me, hovering like a bat in case I fall down going to the bathroom. That's stupid.
And then she said the classic words, "If we'd known you weren't going to follow the rules precisely, we wouldn't have done the transplant."
This translates to, "If we'd known you wouldn't let us own you, we would have let you die of your disease."
Sounds like she's trying to cover a liability problem with another liability problem.
The conversation digressed into a random ramble about how I was putting the general public in danger's way by "zipping around town on my motorcycle" (obvious prejudice). There was much more interest in having me drive my 2 ton truck around in traffic, as if that would be safer for the masses.
That's when I told her I was happy she was going off rotation and that she could leave. Her response was, "I have a right to be here with one of my employees."
So I explained that I'd be happy to leave, as her lectures would not be necessary any longer. She would not win, she could not win, and neither she nor the facility could fire me. I went so far as to say, "You're not my mother."
Hell, she even said something about "all we do for you" as if this were a pro bono charity event.
No, it was not a good interaction, but how ABSOLUTELY PIOUS can a doctor be? Sanctimonious witch!
Quite frankly, Doctor D has always been a cold, stiff, impersonal clinician since the day Ed and I met her. Neither of us like her. She doesn't show up for team appointments. When she does, her general demeanor is one of superiority and aloofness. She's off-putting. Now I know she's an insufferable nag.
Interacting with this woman raised my blood pressure and actually gave me hand tremors. She's not good for a patient's health.
Monday, September 29, 2008
Stupidity and adventure
As previously told, Ed and I went up to Vancouver yesterday. Upon arrival I discovered I'd forgotten part of the pump mechanism that infuses my magnesium, so I missed my mag infusion yesterday. I also goofed up my prednisone dosing for today, only bringing half of what I was supposed to take.
I woke up late today and loaded the FJR for the ride back down to Seattle. I dosed as much prednisone as I had, hydrated myself, and rode the beast back home.
Effects: Muscle cramps in my hands on occasion. I guess the mag infusion works. I dosed as soon as I got home and feel much better. Oh, and I did my prednisone dose correctly too, just a few hours later than scheduled.
Crossing the border this time? 40 minute wait for the unwashed masses. Zero minute wait for my NEXUS card. Nobody in line.
The rest of the ride was uneventful. I remembered that beef jerky and Mountain Dew are a complete meal.
I woke up late today and loaded the FJR for the ride back down to Seattle. I dosed as much prednisone as I had, hydrated myself, and rode the beast back home.
Effects: Muscle cramps in my hands on occasion. I guess the mag infusion works. I dosed as soon as I got home and feel much better. Oh, and I did my prednisone dose correctly too, just a few hours later than scheduled.
Crossing the border this time? 40 minute wait for the unwashed masses. Zero minute wait for my NEXUS card. Nobody in line.
The rest of the ride was uneventful. I remembered that beef jerky and Mountain Dew are a complete meal.
Sunday, September 28, 2008
Tale of two countries
It's Sunday and the weather has been wonderful all day. Tomorrow is supposed to verge on 'spectacular' at 77F. So, Ed and I drove the roller skate up to Vancouver from Seattle so I could ride the motorcycle back down to Seattle tomorrow. I have a few things to do on the bike and they're not being accomplished while I'm in Seattle alone.
Here's the strange part.
Ed was behind the wheel as we crossed the border into Canada. Ed held his Filipino passport with his Canadian Permanent Resident Card sticking out the top. He also held my US passport with my Nexus (priority travel) card sticking out the top.
Here's how the transaction went:
Guard: "Where do you live?"
Ed: "Seattle. Well, he's in Seattle and I'm in Vancouver."
Guard: "What's the relationship between you two."
Ed: "Uh, we're husbands."
Me (to Ed): "We're married also works."
Guard: "Well, there is no established terminology at this point, is there."
Me: "I guess you're right."
Guard: "Thank you gentlemen, have a nice day."
Ed: "But you never took our paperwork."
Guard: "I'm satisfied. Have a nice day."
No, we never handed the guard our passports or cards. Since this was at the new Peace Arch passageway, were they using magic card reader technology off the cards to verify without actual contact?
Yeah, crossing the border without getting a proctologist involved...... strange. Big brother IS watching.
Here's the strange part.
Ed was behind the wheel as we crossed the border into Canada. Ed held his Filipino passport with his Canadian Permanent Resident Card sticking out the top. He also held my US passport with my Nexus (priority travel) card sticking out the top.
Here's how the transaction went:
Guard: "Where do you live?"
Ed: "Seattle. Well, he's in Seattle and I'm in Vancouver."
Guard: "What's the relationship between you two."
Ed: "Uh, we're husbands."
Me (to Ed): "We're married also works."
Guard: "Well, there is no established terminology at this point, is there."
Me: "I guess you're right."
Guard: "Thank you gentlemen, have a nice day."
Ed: "But you never took our paperwork."
Guard: "I'm satisfied. Have a nice day."
No, we never handed the guard our passports or cards. Since this was at the new Peace Arch passageway, were they using magic card reader technology off the cards to verify without actual contact?
Yeah, crossing the border without getting a proctologist involved...... strange. Big brother IS watching.
Friday, September 26, 2008
Eat like a teen, drink like a fish.
My visit to the SCCA was interesting today.
1) I need to increase my oral phosphorus intake. (Potatoes and Neutra-Phos?).
2) They're changing my magnesium infusion because I'm still wasting mag.
3) My prednisone (steroid) taper will happen quickly, starting this weekend.
4) They're doubling my BP med dosage.
5) My antiviral dose needs to increase by 50%.
6) I need to go back on Bactrim on M and Tu only.
7) My FK-506 (Tacrolimus) level is too high so I need to back it off to 4mg instead of 4.5mg.
And finally..... can I get a drumroll please..... I've lost 3 kilograms in 3 days. For the Yanks who read me, that's 2.2 pounds per day.
Yeah, that's bad. I know I put on a couple of extra pounds before the transplant. I know I've been retaining water because of the steroids. I know there are gonna be issues. BUT, I shouldn't be retaining water AND losing weight at this rate.
So my instructions are to keep my stomach full all the time and drink enough fluids to float my eyeballs. Already drinking too many sugary drinks.... Mountain Dew mostly. Will have to switch to low sodium club soda. Water is insanely bitter while on the steroids.
Hmmmmmm..... potatoes..... Solve the calorie/starch/digestibility/phosphorus problem. Gotta get some protein in there somehow..... I like 'cow juice', but it's prohibited within certain timeframes because of a pill interaction. Meat and potatoes...... I think I can handle it.
Eating and dosing is becoming a full time job.
1) I need to increase my oral phosphorus intake. (Potatoes and Neutra-Phos?).
2) They're changing my magnesium infusion because I'm still wasting mag.
3) My prednisone (steroid) taper will happen quickly, starting this weekend.
4) They're doubling my BP med dosage.
5) My antiviral dose needs to increase by 50%.
6) I need to go back on Bactrim on M and Tu only.
7) My FK-506 (Tacrolimus) level is too high so I need to back it off to 4mg instead of 4.5mg.
And finally..... can I get a drumroll please..... I've lost 3 kilograms in 3 days. For the Yanks who read me, that's 2.2 pounds per day.
Yeah, that's bad. I know I put on a couple of extra pounds before the transplant. I know I've been retaining water because of the steroids. I know there are gonna be issues. BUT, I shouldn't be retaining water AND losing weight at this rate.
So my instructions are to keep my stomach full all the time and drink enough fluids to float my eyeballs. Already drinking too many sugary drinks.... Mountain Dew mostly. Will have to switch to low sodium club soda. Water is insanely bitter while on the steroids.
Hmmmmmm..... potatoes..... Solve the calorie/starch/digestibility/phosphorus problem. Gotta get some protein in there somehow..... I like 'cow juice', but it's prohibited within certain timeframes because of a pill interaction. Meat and potatoes...... I think I can handle it.
Eating and dosing is becoming a full time job.
Thursday, September 25, 2008
The English Language
I got the following comment from Roobeedoo yesterday. It was about my use of the word "PANTS".
"Boot camp, that's what you need! By the way "pants" are "underpants" over here, and FL has every intention not to go commando (so no boot camp for him?!)"
Clearly, the British don't know how to use the English language. As my logical source, I cite the fact that the US established the standard for English conversation in Hollywood, California in about 1932 with some little things they called "movies". (The British still use some other word.... sounds like FILLUMS or something.)
But back to the subject at hand:
You see, the word "under" is a modifier of the word "pants". Therefore, in common British use "pants" and "underpants" are diametrically opposed nouns. How can one have "underpants" under your "underpants" if one of them becomes the "interpants" and one of them is clearly the "underpant". Are both of them "underpants" if one has on "pants"? Does this eliminate the "interpant" issue and simply make one "warm"?
Or does this mean that "pants" are underpants, but breeches are overpants? Can't one say overpants and underpants? If pants are underpants, how is that possible if one doesn't have any pants under which one can keep one's underpants?
Is anyone else seeing where this is going? It's all so confusing. No wonder there are kilts.
(Completely tongue in cheek, just in case the British don't "get it".) (Come to think of it, "get it" probably means something besides understand in Britain.)
Good night.
"Boot camp, that's what you need! By the way "pants" are "underpants" over here, and FL has every intention not to go commando (so no boot camp for him?!)"
Clearly, the British don't know how to use the English language. As my logical source, I cite the fact that the US established the standard for English conversation in Hollywood, California in about 1932 with some little things they called "movies". (The British still use some other word.... sounds like FILLUMS or something.)
But back to the subject at hand:
You see, the word "under" is a modifier of the word "pants". Therefore, in common British use "pants" and "underpants" are diametrically opposed nouns. How can one have "underpants" under your "underpants" if one of them becomes the "interpants" and one of them is clearly the "underpant". Are both of them "underpants" if one has on "pants"? Does this eliminate the "interpant" issue and simply make one "warm"?
Or does this mean that "pants" are underpants, but breeches are overpants? Can't one say overpants and underpants? If pants are underpants, how is that possible if one doesn't have any pants under which one can keep one's underpants?
Is anyone else seeing where this is going? It's all so confusing. No wonder there are kilts.
(Completely tongue in cheek, just in case the British don't "get it".) (Come to think of it, "get it" probably means something besides understand in Britain.)
Good night.
Deterioration
I feel good, but I'm deteriorating a bit from the inside. Muscle tone is going away, flexibility is disappearing, desire for activity wanes.
So, tomorrow I need to get off my butt and get moving. I DON'T wanna be in the condition I was previously..... weak legs, lethargic, off......
Yeah, I've been doing intellectual things..... that's the excuse.....
Tomorrow is "Into the garage, and beyond!"
So, tomorrow I need to get off my butt and get moving. I DON'T wanna be in the condition I was previously..... weak legs, lethargic, off......
Yeah, I've been doing intellectual things..... that's the excuse.....
Tomorrow is "Into the garage, and beyond!"
Wednesday, September 24, 2008
Moon walk
AKA - going backward in a forward way.
I got two phone calls today. The first was from a case worker with my insurance company. She called to let me know what benefits were available to me that I hadn't used so far. She also made herself available to me for any future issues regarding coverage. I'd be suspicious, but she's already gotten me coverage on a couple of previously denied claims. Seems legit. Seems good. They seem to be interested in rapid recovery.
The second call was the strange one. The SCCA called to let me know they were changing my drugs BACK to the pre-transplant formulations and levels. This means I'll spend 5 hours LESS time on the infusion pump, can eliminate a minor rash I've developed, and take two pills a day instead. I can't think of a single reason they might reverse the drug formulations if I was doing badly. They'd only reverse themselves if I was doing well. Hmmmm..... Waiting for the other shoe to drop.
More questions to ask on Friday. Hopefully more answers on Monday or Tuesday.
I got two phone calls today. The first was from a case worker with my insurance company. She called to let me know what benefits were available to me that I hadn't used so far. She also made herself available to me for any future issues regarding coverage. I'd be suspicious, but she's already gotten me coverage on a couple of previously denied claims. Seems legit. Seems good. They seem to be interested in rapid recovery.
The second call was the strange one. The SCCA called to let me know they were changing my drugs BACK to the pre-transplant formulations and levels. This means I'll spend 5 hours LESS time on the infusion pump, can eliminate a minor rash I've developed, and take two pills a day instead. I can't think of a single reason they might reverse the drug formulations if I was doing badly. They'd only reverse themselves if I was doing well. Hmmmm..... Waiting for the other shoe to drop.
More questions to ask on Friday. Hopefully more answers on Monday or Tuesday.
Monday, September 22, 2008
Healthy?
I had blood tests at the crack of dawn this morning. I was gone from the house for less than an hour for the blood draw, then came back home and slept for another 3 hours because the steroids had put me off my schedule so badly.
We also had a team appointment at 2:45 today. Team appointments are with a nurse, my assigned PA, and whichever doctor is currently on rounds for the month. Since the docs rotate on a 30 day basis, I've been thru a few doc in the two years we've been playing this game. However, this one was new to me. I like her. She listens well, seems to know what the heck she's talking about, and is generally communicative. I prefer to have a doc who actually talks instead of simply trying to tell you why you need to follow their directives.
So we talked about some of the new drugs and their side effects. We talked about minor changes in the current drug plan, and we talked about the future.
To tell you the truth, now that the Cyclosporine problem is gone, I feel good - very good. If this is the worst I can expect for my future, it's not too bad. The simple truth is that I know I can go UP from here, with better physical fitness and improved mental acuity. It's just gonna take a little work and some time.
How well am I doing right now? I've been given a small holiday from the center. I have no appointments on T, W, and Th. A reprieve from the governor, as it were.
But FRIDAY, oh what a day that will be. Blood draw at 8:30 AM, bone marrow aspiration at 9:00 AM, then a team visit at 10:45 AM.
See, Friday is day 28. Tradition dictates they should find out if any of this stuff worked. Am I engrafting? If I'm engrafting, is it the donor cells that are engrafting, or is it my old cells? Is the tumor load being reduced? In short, have there been any benefits derived from the million + dollars that have been burned in the "Andre Project"?
Friday is the tell-all day. Of course, we won't know the answers on Friday, we'll simply have the materials available for testing...... and we'll get the verdict sometime next week. Time will tell.
We also had a team appointment at 2:45 today. Team appointments are with a nurse, my assigned PA, and whichever doctor is currently on rounds for the month. Since the docs rotate on a 30 day basis, I've been thru a few doc in the two years we've been playing this game. However, this one was new to me. I like her. She listens well, seems to know what the heck she's talking about, and is generally communicative. I prefer to have a doc who actually talks instead of simply trying to tell you why you need to follow their directives.
So we talked about some of the new drugs and their side effects. We talked about minor changes in the current drug plan, and we talked about the future.
To tell you the truth, now that the Cyclosporine problem is gone, I feel good - very good. If this is the worst I can expect for my future, it's not too bad. The simple truth is that I know I can go UP from here, with better physical fitness and improved mental acuity. It's just gonna take a little work and some time.
How well am I doing right now? I've been given a small holiday from the center. I have no appointments on T, W, and Th. A reprieve from the governor, as it were.
But FRIDAY, oh what a day that will be. Blood draw at 8:30 AM, bone marrow aspiration at 9:00 AM, then a team visit at 10:45 AM.
See, Friday is day 28. Tradition dictates they should find out if any of this stuff worked. Am I engrafting? If I'm engrafting, is it the donor cells that are engrafting, or is it my old cells? Is the tumor load being reduced? In short, have there been any benefits derived from the million + dollars that have been burned in the "Andre Project"?
Friday is the tell-all day. Of course, we won't know the answers on Friday, we'll simply have the materials available for testing...... and we'll get the verdict sometime next week. Time will tell.
Sunday, September 21, 2008
Home again, home again.......
I spent last night in my own bed, disconnected from machines and beeping. Nobody took my vital signs every 4 hours. Nobody needed to measure my outputs every time I felt the urge. Nobody made me eat my meals at their convenience. Nobody left the lights on when they left.
The best part of all? I got to sleep next to my guy. I got to listen to him snore in his usual way. I got to hear him say "I love you" in his usual way every time I got back from dropping a penny last night. He doesn't even know he does it.
Well, I guess he does now....... :)
The best part of all? I got to sleep next to my guy. I got to listen to him snore in his usual way. I got to hear him say "I love you" in his usual way every time I got back from dropping a penny last night. He doesn't even know he does it.
Well, I guess he does now....... :)
Thursday, September 18, 2008
Three wonderful things
1) Finding out the source of your fevers.
2) Eliminating the source.
3) Feeling like 0.5 million bucks.
Guess what? I'm SERIOUSLY allergic to Cyclosporine. Yeah, 103F fever level allergic! Having the hospital run out of Cyclosporine was a blessing in disguise. I got switched to something else and BINGO!, no more fevers.
So I've been taken off quarantine and asked to start eating regular food so I can go home!
The bad side? I'm on 40mg of Prednisone per day for the next 10 days. I'm also on two other steroids "forever". Remember the cookie addiction from earlier this year? Well, run right out and buy stock in Keebler because my insurance will be buying them for me for the next decade!
Anyway, now that I'm on Prednisone, I hope to have the hospital repainted by tomorrow. Good night.
2) Eliminating the source.
3) Feeling like 0.5 million bucks.
Guess what? I'm SERIOUSLY allergic to Cyclosporine. Yeah, 103F fever level allergic! Having the hospital run out of Cyclosporine was a blessing in disguise. I got switched to something else and BINGO!, no more fevers.
So I've been taken off quarantine and asked to start eating regular food so I can go home!
The bad side? I'm on 40mg of Prednisone per day for the next 10 days. I'm also on two other steroids "forever". Remember the cookie addiction from earlier this year? Well, run right out and buy stock in Keebler because my insurance will be buying them for me for the next decade!
Anyway, now that I'm on Prednisone, I hope to have the hospital repainted by tomorrow. Good night.
Wednesday, September 17, 2008
Something I forgot to tell you.
The "Feud of the Doctors" happened the day before yesterday. I've lost track of time.
The day before yesterday is also when they decided they wanted to do a pulmonary scope / pulmonary wash. For those of you who may not come too quickly to the inherent cruelty of something called a pulmonary wash: the whole process began with a complex arrangement of video cameras, VCRs, and endoscopes.
Next step? They put COCAINE up my nose. Yup. Co-freaking-caine.
Then they stuck a fiber optic scope up my nose, down the back of my throat, straight past the vocal cords (did I mention I wasn't allowed to speak), and INTO MY FREAKING LUNGS. Whereupon they took some lovely videos and SPRAYED WATER INTO MY LUNGS while simultaneously vacuuming the water out.
"You may have a slight urge to cough." What an understatement! Slight urge? Actually, I had a slight urge to meet Ariel, the Little Mermaid! I've never watched myself drown before!
And so, I did what I always do when I'm in a high stress situation. I lowered my blood pressure and went to sleep.
The day before yesterday is also when they decided they wanted to do a pulmonary scope / pulmonary wash. For those of you who may not come too quickly to the inherent cruelty of something called a pulmonary wash: the whole process began with a complex arrangement of video cameras, VCRs, and endoscopes.
Next step? They put COCAINE up my nose. Yup. Co-freaking-caine.
Then they stuck a fiber optic scope up my nose, down the back of my throat, straight past the vocal cords (did I mention I wasn't allowed to speak), and INTO MY FREAKING LUNGS. Whereupon they took some lovely videos and SPRAYED WATER INTO MY LUNGS while simultaneously vacuuming the water out.
"You may have a slight urge to cough." What an understatement! Slight urge? Actually, I had a slight urge to meet Ariel, the Little Mermaid! I've never watched myself drown before!
And so, I did what I always do when I'm in a high stress situation. I lowered my blood pressure and went to sleep.
Something Ed left out
Last night, when the battle of the Doctors was happening in my room, the MD (who I really think was just a PA), asked Ed who he was. Ed said, "I'm Ed." MD/PA goofus asked, "And you are?". Ed said, "I'm his huband."
Goofus really didn't know what to say. He murmured "Oh" and left the room.
I so wanted to hear Ed say something rude like, "...and unlike you, I actually know something about biology, dosing, and reactions."
Goofus really didn't know what to say. He murmured "Oh" and left the room.
I so wanted to hear Ed say something rude like, "...and unlike you, I actually know something about biology, dosing, and reactions."
Monday, September 15, 2008
Hospital - Day 11
Ed here, in Seattle. I decided to surprise Andre by driving back right after work. I managed to get here in 2.5 hrs.
Andre still has the usual complaints: fever, nausea, headaches, chills and GI issues. When I arrived, he had been told to take his anti-rejection, anti-GVHD drug--cyclosporine in solution form, orally. The hospital had run out of the IV form of cyclosporine which they had been infusing through his central line for 3 hrs/dose. They've been giving him cyclosporine slowly because they want to minimize the allergic reaction he gets from this drug. We figured that taking the cyclosporine orally might put his allergic reaction in dangerous territory. So we decided to clarify with the nurse who, in turn, asked the night-shift doctor on duty.
Half-an-hour later, a man came in Andre's room WITHOUT putting on the required isolation gear (the yellow coat, pale blue gloves, baby pink face mask). Instinctively, I yelled at the guy and told him to suit up. It turned out he was the doctor.
I was willing to forgive him that time and give him another chance for redemption. Once he was appropriately attired, he started asking Andre some questions regarding his allergies, his symptoms, etc.--basically everything that should be in his charts. This completely ticked me off because it seems he doesn't know anything about Andre and his condition. I very bluntly, with a clearly annoyed tone, asked if he had even read Andre's medical records. He said "no". If looks could kill, he would be dead by now. He must have noticed my irritation because he then started to do the routine "doctorly" things on Andre (checking his vitals, listening to his chest, examining his eyes, etc.) with an apologetic gesture. After that he left and said that Andre can just take the 7 ml solution form of cyclosporine slowly over a couple of hours.
Andre's first ml of the drug ended up getting puked out. So's the second ml. I asked them to just get Andre the capsule version and we'll try it. So far, we've downed 1 out of the 7 pills. Six more to go. Wish us luck.
P.S. He finished all 7 pills at midnight. I'm back in YVR.
Andre still has the usual complaints: fever, nausea, headaches, chills and GI issues. When I arrived, he had been told to take his anti-rejection, anti-GVHD drug--cyclosporine in solution form, orally. The hospital had run out of the IV form of cyclosporine which they had been infusing through his central line for 3 hrs/dose. They've been giving him cyclosporine slowly because they want to minimize the allergic reaction he gets from this drug. We figured that taking the cyclosporine orally might put his allergic reaction in dangerous territory. So we decided to clarify with the nurse who, in turn, asked the night-shift doctor on duty.
Half-an-hour later, a man came in Andre's room WITHOUT putting on the required isolation gear (the yellow coat, pale blue gloves, baby pink face mask). Instinctively, I yelled at the guy and told him to suit up. It turned out he was the doctor.
I was willing to forgive him that time and give him another chance for redemption. Once he was appropriately attired, he started asking Andre some questions regarding his allergies, his symptoms, etc.--basically everything that should be in his charts. This completely ticked me off because it seems he doesn't know anything about Andre and his condition. I very bluntly, with a clearly annoyed tone, asked if he had even read Andre's medical records. He said "no". If looks could kill, he would be dead by now. He must have noticed my irritation because he then started to do the routine "doctorly" things on Andre (checking his vitals, listening to his chest, examining his eyes, etc.) with an apologetic gesture. After that he left and said that Andre can just take the 7 ml solution form of cyclosporine slowly over a couple of hours.
Andre's first ml of the drug ended up getting puked out. So's the second ml. I asked them to just get Andre the capsule version and we'll try it. So far, we've downed 1 out of the 7 pills. Six more to go. Wish us luck.
P.S. He finished all 7 pills at midnight. I'm back in YVR.
Sunday, September 14, 2008
Hospital - Day 10
Ed again. Andre has been having a rough weekend. He still has a fever and this time, it's been present pretty much all day. Today, they took another CT scan. Originally, they were just going to scan from his abdomen down to his groin area. But because he woke up this morning with difficulty breathing, they decided to include his chest area in the CT scan and to put him on supplementary oxygen. This happened at about 2 this afternoon. At around 5:30 PM, his nurse came in and ask if I looked good in yellow.
The chest CT scan result showed some sign of potential viral infection. His blood draws still had not shown any infection whatsoever so they decided to get a different sample. This time, it's nasal washes. If you haven't had them, it's like this: the nurse squirts 5 ml of saline into a nostril and the patient needs to blow his nose as hard as he can, catching the washing in a cup. The same process is repeated on the other nostril. Waterboarding lite.
So going back whether I look good in yellow (I do), I and everyone who enters his room now has to wear a light yellow protective nylon gown, a pair of pale blue nitrile gloves, and a baby pink face mask with built-in visor. Andre now needs to be in "isolation" to protect the other patients on the floor from what he could potentially be carrying. It takes at least three days for the results to come back. Hopefully, it'll come back negative and that he'll start feeling better soon.
One more thing: because of his persistent GI problems, he had just "bought himself a GI consult" as his hospital oncologist said this morning. A gastroenterologist will come and talk to him tomorrow because they don't work on weekends (remember Andre's rant about gastroenterologists?). We'll know when the actual "spelunking" will happen after the talk with the gastro. The GI problems might be a manifestation of GVHD. I know we need a little bit of it since it's the same mechanism that is harnessed to kill Andre's bad myeloma cells, but I hope it'll be manageable.
This is it for now. It's Sunday night which means I go back to Vancouver tomorrow morning. Please keep sending Andre your love thoughts.
The chest CT scan result showed some sign of potential viral infection. His blood draws still had not shown any infection whatsoever so they decided to get a different sample. This time, it's nasal washes. If you haven't had them, it's like this: the nurse squirts 5 ml of saline into a nostril and the patient needs to blow his nose as hard as he can, catching the washing in a cup. The same process is repeated on the other nostril. Waterboarding lite.
So going back whether I look good in yellow (I do), I and everyone who enters his room now has to wear a light yellow protective nylon gown, a pair of pale blue nitrile gloves, and a baby pink face mask with built-in visor. Andre now needs to be in "isolation" to protect the other patients on the floor from what he could potentially be carrying. It takes at least three days for the results to come back. Hopefully, it'll come back negative and that he'll start feeling better soon.
One more thing: because of his persistent GI problems, he had just "bought himself a GI consult" as his hospital oncologist said this morning. A gastroenterologist will come and talk to him tomorrow because they don't work on weekends (remember Andre's rant about gastroenterologists?). We'll know when the actual "spelunking" will happen after the talk with the gastro. The GI problems might be a manifestation of GVHD. I know we need a little bit of it since it's the same mechanism that is harnessed to kill Andre's bad myeloma cells, but I hope it'll be manageable.
This is it for now. It's Sunday night which means I go back to Vancouver tomorrow morning. Please keep sending Andre your love thoughts.
Saturday, September 13, 2008
Another anniversary.
Today is the second anniversary of my initial diagnosis. We've officially gotten 2 years out of this regimen. Who knew.
Poking holes
Andre here. This brief entry is probably going to be the peak of my activity today.
The spinal tap (lumbar puncture) was relatively uneventful today. Very little pain. Over in 5 minutes.
I'm on TPN. That basically means they're feeding me thru a bag. It's about 2 liters of bright green 'stuff' that's infused directly into my bloodstream. I was on this same stuff when I had my sigmoid removed last year.
They want to do a CT of my belly. Cool, whatever.
The spinal tap (lumbar puncture) was relatively uneventful today. Very little pain. Over in 5 minutes.
I'm on TPN. That basically means they're feeding me thru a bag. It's about 2 liters of bright green 'stuff' that's infused directly into my bloodstream. I was on this same stuff when I had my sigmoid removed last year.
They want to do a CT of my belly. Cool, whatever.
Friday, September 12, 2008
Hospital - Day 8
Ed here.
We are still here in the hospital. Andre still gets feverish in the afternoons and he still has a massive headache and high BP. They sent him for a CT scan yesterday to look at his head and chest. They didn't see anything out of the ordinary. Today, it was an MRI to examine his head and neck. We'll let you know of the results as soon as we find out. Tomorrow, they'll do a spinal tap. I assume it's to check for potential infection and for the potential cause of the headaches.
We are still here in the hospital. Andre still gets feverish in the afternoons and he still has a massive headache and high BP. They sent him for a CT scan yesterday to look at his head and chest. They didn't see anything out of the ordinary. Today, it was an MRI to examine his head and neck. We'll let you know of the results as soon as we find out. Tomorrow, they'll do a spinal tap. I assume it's to check for potential infection and for the potential cause of the headaches.
Thursday, September 11, 2008
Home is where the heart is
It's Thursday night which means tomorrow I get to go home. Home to my Andre.
He had a rough day today, not even 5 min of feeling "adequate" as we call it. Fever hasn't made its appearance yet but its ugly cousins, nausea and vomiting, did. I wish I was there with him because I know it comforts him when I lightly rub his back. Tomorrow, I get to do it. Tomorrow, I get to take care of my honey. Tomorrow, I'll be home.
He had a rough day today, not even 5 min of feeling "adequate" as we call it. Fever hasn't made its appearance yet but its ugly cousins, nausea and vomiting, did. I wish I was there with him because I know it comforts him when I lightly rub his back. Tomorrow, I get to do it. Tomorrow, I get to take care of my honey. Tomorrow, I'll be home.
Wednesday, September 10, 2008
Hospital - Day 6
Ed again. Andre's fever was the usual gone-and-back again deal. He was feeling "adequate" this morning when I called him but at around 6 PM, his 102 fever was back. I've been telling him to talk to his doctors if this fever is a potential drug reaction. We'll see if they'll look into it.
Andre had two visitors today. The first one was our girlfriend, S. The second one was R, Andre’s friend who lives in NYC. This completely took Andre by surprise. He flew into town to just see him. How incredible is that? The two visits made Andre happy so I’m happy too.
Andre had two visitors today. The first one was our girlfriend, S. The second one was R, Andre’s friend who lives in NYC. This completely took Andre by surprise. He flew into town to just see him. How incredible is that? The two visits made Andre happy so I’m happy too.
Tuesday, September 09, 2008
I have no title.
I took a walk thru the ward this evening before my shower. Normally I just do the walk and try to get it over with, but this evening I tried to understand what was happening around me.
The University of Washington Hospital is a brilliant facility. The cancer ward occupies the 7th and 8th floors of the east wing. The view from my 8th floor room is stellar, overlooking Lake Washington near the Montlake Cut. The days have been sunny, so I get to watch the boats navigate in the foreground with the mountains beyond. At night I can watch the cars navigate the bridge. This is a very nice, albeit expensive hotel room.
But that's the superficial side of the facility. It's easy to see that it's nicely designed, efficient, and effective.
There are people here too. This isn't a movie set. It's the people I saw this evening that impressed me most.
Every room is a private room. All patients are cancer patients. Thankfully not all the rooms are full. Each room has the patient's first name on the door. At first, I thought this was probably a choice they made for HIPAA and security, but it struck me that it actually humanizes the patient. And so I read: John, Fred, Antoinette, Susan, Christopher, and of course, Andre.
Many of the doors were open. It was easy to see what was going on in these rooms. What had gone on in these rooms for some time: Waiting, Pain, and Horror.
I returned to the room marked "Andre" and waited for the pain of their horrors to subside. Ed and I are so lucky.
The University of Washington Hospital is a brilliant facility. The cancer ward occupies the 7th and 8th floors of the east wing. The view from my 8th floor room is stellar, overlooking Lake Washington near the Montlake Cut. The days have been sunny, so I get to watch the boats navigate in the foreground with the mountains beyond. At night I can watch the cars navigate the bridge. This is a very nice, albeit expensive hotel room.
But that's the superficial side of the facility. It's easy to see that it's nicely designed, efficient, and effective.
There are people here too. This isn't a movie set. It's the people I saw this evening that impressed me most.
Every room is a private room. All patients are cancer patients. Thankfully not all the rooms are full. Each room has the patient's first name on the door. At first, I thought this was probably a choice they made for HIPAA and security, but it struck me that it actually humanizes the patient. And so I read: John, Fred, Antoinette, Susan, Christopher, and of course, Andre.
Many of the doors were open. It was easy to see what was going on in these rooms. What had gone on in these rooms for some time: Waiting, Pain, and Horror.
I returned to the room marked "Andre" and waited for the pain of their horrors to subside. Ed and I are so lucky.
60 minutes
I've got about an hour to blog. It's 11pm and they're not going to hook me up to the liquid leash until about midnight.
I feel better. Not great, but better. Here's the odd part. We've put me on a Fentanyl patch for pain and I take Tylenol every 4 hours, but unless I'm well enough to move about, I have a headache that would kill a mere mortal. It's BRUTAL.
And so, in spite of all the chemicals and high tech solutions we've applied, I got the bright idea to ask for a plastic bag, some ice cubes, and a wash cloth. My nurse understood the concept and delivered the perfect ice pack. It was placed on my forehead about an hour ago, and now I'm well enough to blog. No more fever of 102, no more headache.
Old tech works.
I feel better. Not great, but better. Here's the odd part. We've put me on a Fentanyl patch for pain and I take Tylenol every 4 hours, but unless I'm well enough to move about, I have a headache that would kill a mere mortal. It's BRUTAL.
And so, in spite of all the chemicals and high tech solutions we've applied, I got the bright idea to ask for a plastic bag, some ice cubes, and a wash cloth. My nurse understood the concept and delivered the perfect ice pack. It was placed on my forehead about an hour ago, and now I'm well enough to blog. No more fever of 102, no more headache.
Old tech works.
Hospital - Day 5
This is Ed, again. This means Andre is still not well enough to blog. You're probably missing his clever writing. I know I do.
Our morning started out fine. Andre had night sweats at about 2-3 AM which we thought was the sign that the fevers are over. I left the hospital at 5:45 AM, went to the house and was off to Vancouver half-an-hour later. While still commuting, I heard from Andre who was feeling a lot chipper like his usual self. This made me less guilty leaving him while he is still at the hospital. And so, I went about my work day.
I called him around 3:45 PM when I finally wrestled some time to grab lunch. Unlike that morning, he sounded bad. He said at about 1 PM, it's as if someone pushed the kill switch on his body (his motorcycle metaphor, not mine) and started feeling like rolled up doggie doodoo.
About 40 min ago, he called me to say he's going to bed. He sounded even worse. His temperature was back up to 102. They gave him the usual Tylenol and antibiotic transfusion. And now, I feel really worried. I told him that I'll drive back down but he didn't want me to. He misses me (and I miss him) but the hospital staff have been taking good care of him. I just told him to be a squeaky wheel and never hesitate to call the nurse--no more Mr. Macho. On that note, we said our "I love yous" and I let him go to sleep.
I'm still here at work but I wanted to blog to let you all know how he's doing. I know I owe some of you returned phone calls and email replies but I hope this will suffice. It's been a crazy day and it's not yet over.
Thank you all for keeping us in your thoughts (for those who are atheists) and prayers (for those of you who are spiritual). Keep those positive energy flowing our way. We appreciate them.
Our morning started out fine. Andre had night sweats at about 2-3 AM which we thought was the sign that the fevers are over. I left the hospital at 5:45 AM, went to the house and was off to Vancouver half-an-hour later. While still commuting, I heard from Andre who was feeling a lot chipper like his usual self. This made me less guilty leaving him while he is still at the hospital. And so, I went about my work day.
I called him around 3:45 PM when I finally wrestled some time to grab lunch. Unlike that morning, he sounded bad. He said at about 1 PM, it's as if someone pushed the kill switch on his body (his motorcycle metaphor, not mine) and started feeling like rolled up doggie doodoo.
About 40 min ago, he called me to say he's going to bed. He sounded even worse. His temperature was back up to 102. They gave him the usual Tylenol and antibiotic transfusion. And now, I feel really worried. I told him that I'll drive back down but he didn't want me to. He misses me (and I miss him) but the hospital staff have been taking good care of him. I just told him to be a squeaky wheel and never hesitate to call the nurse--no more Mr. Macho. On that note, we said our "I love yous" and I let him go to sleep.
I'm still here at work but I wanted to blog to let you all know how he's doing. I know I owe some of you returned phone calls and email replies but I hope this will suffice. It's been a crazy day and it's not yet over.
Thank you all for keeping us in your thoughts (for those who are atheists) and prayers (for those of you who are spiritual). Keep those positive energy flowing our way. We appreciate them.
Monday, September 08, 2008
Hospital - Day 4
It's Monday morning and this is Ed. Yesterday was the same pattern: Andre's temperature was fine in the daytime but went up again to about 102. We've finally asked for something stronger than Tylenol to take care of his pain. Hopefully, they'll accede.
For today, he'll get 2 units of blood and a chest X-ray. His cultures are still negative so they still don't know the culprit. They told us that for most of these cases, they really only manage to get cultures from 20 percent of them. Most of the time, they just empirically determine which antibiotic to use and hope it works.
For today, he'll get 2 units of blood and a chest X-ray. His cultures are still negative so they still don't know the culprit. They told us that for most of these cases, they really only manage to get cultures from 20 percent of them. Most of the time, they just empirically determine which antibiotic to use and hope it works.
Sunday, September 07, 2008
Watermelon
I'd like to postulate that watermelon might be the perfect food for cancer patients. Terribly juicy, mild flavor, easy to chew, easy to swallow. They're tasty hydration. The sugars are readily available, and the pulp is easily digested.
The slight astringency of watermelon also helps with a pasty mouth.
Guess what I had for dinner.
The docs are keeping me here until they find out what's making my fever go up and down. Let's face it, a 53 year old man with a fever of 102.2 is in trouble, and we couldn't get the fever to break for several hours. Naturally a fever of that magnitude, two days in a row, has worn me out to the point where blogging is the highlight of my day. Talk about your flu-like symptoms!
But, I'm still alive and kicking.
The slight astringency of watermelon also helps with a pasty mouth.
Guess what I had for dinner.
The docs are keeping me here until they find out what's making my fever go up and down. Let's face it, a 53 year old man with a fever of 102.2 is in trouble, and we couldn't get the fever to break for several hours. Naturally a fever of that magnitude, two days in a row, has worn me out to the point where blogging is the highlight of my day. Talk about your flu-like symptoms!
But, I'm still alive and kicking.
Saturday, September 06, 2008
Hospital - Day 2
It's Saturday night and we're still here at the hospital. Andre woke up this morning feeling a lot better than yesterday. His temperature was normal when the doctor did her rounds this morning. She told us that Andre might get discharged tomorrow, Sunday. It's probably not going to happen.
Andre's temperature shot up to 102 about an hour ago. They will do another culture of his blood sample to see if they can detect any bacterial infection. The culture from last night was negative. Aside from the fever, his BP was high at 150 over 80. Additionally, he has not been eating. He tried a couple of slices of watermelons. He said it tasted wonderful doing down, horrible coming back up.
Andre's temperature shot up to 102 about an hour ago. They will do another culture of his blood sample to see if they can detect any bacterial infection. The culture from last night was negative. Aside from the fever, his BP was high at 150 over 80. Additionally, he has not been eating. He tried a couple of slices of watermelons. He said it tasted wonderful doing down, horrible coming back up.
Friday, September 05, 2008
Hospital
This is Ed. It's past 11 PM, Friday and I'm here at the University of Washington Medical Center Hospital blogging. Andre is sleeping with the hydration fluids and antibiotics being delivered through his central line.
Andre was ordered to go to the hospital after his morning appointment at the SCCA because his temperature was at 101. Our lovely girlfriends, P & S, were kind enough to pick him up at the clinic, drop him off at the hospital and drive Andre's pickup truck home. Where was I when all this was happening? Across the border, worried sick. But I'm here with him now and we're glad to be together. I'll be spending the night here at the hospital. Hopefully, Andre will get some restful sleep even with my snoring and the nurse's constant interruption.
We'll keep you posted.
Andre was ordered to go to the hospital after his morning appointment at the SCCA because his temperature was at 101. Our lovely girlfriends, P & S, were kind enough to pick him up at the clinic, drop him off at the hospital and drive Andre's pickup truck home. Where was I when all this was happening? Across the border, worried sick. But I'm here with him now and we're glad to be together. I'll be spending the night here at the hospital. Hopefully, Andre will get some restful sleep even with my snoring and the nurse's constant interruption.
We'll keep you posted.
Thursday, September 04, 2008
Graphic humility
I'm going to tell you what just happened less than half an hour ago. It exemplifies what cancer patients endure outside of what's on their treatment schedule. It's the result of chemo and radiation and 2 years of steroids. Don't read any more if you tend to be squeamish.
As you're aware, I've been having rather violent reactions from my lower GI tract since the radiation therapy last Friday. Well, I felt a sudden sense of urgency and rushed to the toilet.
When I pulled my underwear down, the tip of my penis was stuck to my briefs. I pulled the tip of my penis and a small part of my urethra off! Yes, I pulled off enough that it's bleeding drops of blood.
Yes, I have a band-aid covering the end of my penis now. Yes, I'll have to pull the band aid off every 20 minutes or so because of the hydration regimen they have me on. Yes, I'll have to worry about clotting, scabbing, and blockage until I see the docs again tomorrow. Yes, it hurts like hell. No, I'm not happy.
THIS is the kind of crap cancer patients put up with. The treatments are bad enough, but two years of steroids that thin the skin, a week of Foscarnet (a phosphoric acid derivative), and TBI (Total Body Irradiation) have conspired to create another medical issue.
I was warned today that Foscarnet can cause genital ulcers. Looks like I might be in line for one.
Why am I being so forthcoming? So that my readers will understand that it's not always the chemo and the transplants and the procedures. Lots of our issues come in the form of side effects that, like straw loaded on a camel's back, eventually burden us to the point of collapse.
I urge my readers who are caregivers to make sure your charges are able and willing to share unfortunate and potentially embarrassing details regarding their care. If, for example, something like this happened to a patient and the caregiver wasn't informed, a much worse condition might develop that could have been prevented.
It's my feeling that some patients might not be willing to tell a family member even though they'd easily tell a medical professional. Make sure everyone in the chain realizes that there's no reason to blush. It's a health issue.
As you're aware, I've been having rather violent reactions from my lower GI tract since the radiation therapy last Friday. Well, I felt a sudden sense of urgency and rushed to the toilet.
When I pulled my underwear down, the tip of my penis was stuck to my briefs. I pulled the tip of my penis and a small part of my urethra off! Yes, I pulled off enough that it's bleeding drops of blood.
Yes, I have a band-aid covering the end of my penis now. Yes, I'll have to pull the band aid off every 20 minutes or so because of the hydration regimen they have me on. Yes, I'll have to worry about clotting, scabbing, and blockage until I see the docs again tomorrow. Yes, it hurts like hell. No, I'm not happy.
THIS is the kind of crap cancer patients put up with. The treatments are bad enough, but two years of steroids that thin the skin, a week of Foscarnet (a phosphoric acid derivative), and TBI (Total Body Irradiation) have conspired to create another medical issue.
I was warned today that Foscarnet can cause genital ulcers. Looks like I might be in line for one.
Why am I being so forthcoming? So that my readers will understand that it's not always the chemo and the transplants and the procedures. Lots of our issues come in the form of side effects that, like straw loaded on a camel's back, eventually burden us to the point of collapse.
I urge my readers who are caregivers to make sure your charges are able and willing to share unfortunate and potentially embarrassing details regarding their care. If, for example, something like this happened to a patient and the caregiver wasn't informed, a much worse condition might develop that could have been prevented.
It's my feeling that some patients might not be willing to tell a family member even though they'd easily tell a medical professional. Make sure everyone in the chain realizes that there's no reason to blush. It's a health issue.
Wednesday, September 03, 2008
Club Soda
I've been feeling like warmed over death all day long. Kidneys in pain, lack of energy, generally bad. Suzie called and I managed to con her into bringing me some club soda.
It seems to have relieved many of the upper GI issues I had. Now I just need to eat some dinner.
I had some excitement this evening. MAJOR raccoon fight under the deck behind the house. Looks like about a half dozen of them were involved. What I heard under the deck suggests that Ed's gonna need to look for a carcass this weekend.
I have a new infusion regimen that involves adding another liter+ to the equation. At 250cc/hr, that's another 5 hours a day on the damned pump. Yippee.
It seems to have relieved many of the upper GI issues I had. Now I just need to eat some dinner.
I had some excitement this evening. MAJOR raccoon fight under the deck behind the house. Looks like about a half dozen of them were involved. What I heard under the deck suggests that Ed's gonna need to look for a carcass this weekend.
I have a new infusion regimen that involves adding another liter+ to the equation. At 250cc/hr, that's another 5 hours a day on the damned pump. Yippee.
Tuesday, September 02, 2008
Andre and the dog.
"Ruff! Ruff! Ruff!", said the dog.
"Rough! Rough! Rough!", said Andre.
I'm going to bed.
"Rough! Rough! Rough!", said Andre.
I'm going to bed.
I got a call.
The SCCA wants me to get an infusion onsite tonight at 7pm. Crap. I don't wanna! (But I will.)
The piper is ripping me off!
Paying the piper is terribly expensive right now. Holy moley do I feel bad. Muscle pain, bone pain, headache. It's like a really bad case of the flu with nausea, diarrhea, and chills.
The docs tell me its normal. They say it'll go away in 10 days.
I'm still ambulatory and am taking care of myself, but I'm not enjoying it. Food? Yuck....
The docs tell me its normal. They say it'll go away in 10 days.
I'm still ambulatory and am taking care of myself, but I'm not enjoying it. Food? Yuck....
Monday, September 01, 2008
Paying the piper.
Day two - Time to pay the piper.
Apparently the radiation hasn't been too good for my lower GI tract. Heck, it hasn't been too good for my upper GI either, come to think of it. I really don't feel like eating much, and when I do eat, my lower GI reacts with considerable urgency. I'm gonna lose weight like a supermodel again. I'm sorta glad I packed on a few megatons before the procedure.
I'm of the opinion that I'm over-hydrated. My kidneys are working overtime, my bladder is constantly full, I'm a bit bloated, and my lower GI is producing mostly water. Of course, this situation is preferable to dehydration, but it's uncomfortable and inconvenient.
On the pain and discomfort front, I'm having some bone pain, general malaise, and kidney pain. I have little energy.
Two Tylenol helps a lot.
Apparently the radiation hasn't been too good for my lower GI tract. Heck, it hasn't been too good for my upper GI either, come to think of it. I really don't feel like eating much, and when I do eat, my lower GI reacts with considerable urgency. I'm gonna lose weight like a supermodel again. I'm sorta glad I packed on a few megatons before the procedure.
I'm of the opinion that I'm over-hydrated. My kidneys are working overtime, my bladder is constantly full, I'm a bit bloated, and my lower GI is producing mostly water. Of course, this situation is preferable to dehydration, but it's uncomfortable and inconvenient.
On the pain and discomfort front, I'm having some bone pain, general malaise, and kidney pain. I have little energy.
Two Tylenol helps a lot.
Sunday, August 31, 2008
Day One report
It's 11:30am of Day One. I got out of bed at about an hour ago. I'm a bit spent.
Last night was pretty rough with some nausea and considerable churning of my lower GI tract. Thankfully it seems to have resolved itself this morning. I'm still a bit tired due to a lack of good sleep last night.
I'm going to speak to the SCCA today about my hydration program. I don't think my bladder should be full every hour. There's another reason I didn't get much sleep last night.
How do I feel? Pretty good, just spent. I feel as I would have 5 years ago after a rough night. Nothing new.
Last night was pretty rough with some nausea and considerable churning of my lower GI tract. Thankfully it seems to have resolved itself this morning. I'm still a bit tired due to a lack of good sleep last night.
I'm going to speak to the SCCA today about my hydration program. I don't think my bladder should be full every hour. There's another reason I didn't get much sleep last night.
How do I feel? Pretty good, just spent. I feel as I would have 5 years ago after a rough night. Nothing new.
Saturday, August 30, 2008
Transplant details
Here are the transplant details:
Last Sunday, the donor started doing chemo to make his body produce excess bone marrow stem cells. Yesterday he was hooked up to an aphoresis machine with an IV in each arm. The machine pulled blood out of one arm, filtered it to separate the stem cells from his blood, and then returned most of his blood to his other arm. I estimate this procedure took 5 hours. So, chemo for 5 days and then hell for 5 hours. Amazing.
In my case, the chemo and prep started last Monday with Total Body Irradiation at 11am Friday morning. Basically they bombard your body laterally with radiation from head to toe over about a 20 minute period, then they literally turn the gurney around and do the same to the other side of your body as if you were a rotisserie chicken or shawarma/doner kabab. There was no "Shake and Bake" used. Apparently the effects of the radiation can be quite devastating for some patients. The techs commented that I performed in the 95th percentile because many people apparently pass out during the process. Yes, I felt something, but I can't exactly tell you if what I felt was psychological (knowledge that it was radiation emanating from the source of sound), or whether there was an actual physical sensation. It was quite subtle.
Anyway, I went to sleep during the process and wasn't pleased that they kept waking me up every 2 minutes to see if I was OK. It wasn't high stress for me. WAY easier than getting me to go into an MRI.
Ok, so I bailed from the radiation facility at about 12:30 and my buddies Suzie and Pam took me home for a couple of hours. Thanks Suzie and Pam!
Suzie picked me back up at a little after 2:30pm so I could check into the hospital for the transplant. I clocked in at almost exactly 3pm and watched TV until our friend Chao arrived for a visit. Chao's a good guy. (We talked about Ed a lot.)
Soon afterward, Ed arrived from Vancouver with smuggled Chinese food. Unfortunately it was from Panda Express (food court junk). Not to my appetite. I ordered hospital food. (The UW hospital has "room service" and a complete menu. Not bad, but slightly industrial.)
Chao had a dinner date with friends, so Ed and I watched TV for a few hours until about 11pm, whereupon it was announced that my transplant cells would arrive at midnight. Hmmm..... two hours earlier than previously advised.
Sure as heck, about 5 minutes before midnight, two bags of Sangria arrived, slightly chilled to 74F. They were individually hung from their "botas" and infused into my central line over the next three and three quarters hours.
Unfortunately, they checked on me every 15 minutes or so to make sure I wasn't having a reaction, and when they were finally done at about 4:30, Ed was snoring like a cartoon character. I didn't get much sleep last night and they allowed me to check out of the facility at noon today. I was there for only 21 hours.
Today has been a bit of a recovery day. People ask me how I feel and I have to say I'm surprisingly good, considering what everyone has told me I should feel like. Yes, I'm sleepy and slightly worn out, but overall I feel healthy enough.
Heck, we went out for dinner with friends tonight. I must feel adequate.
Was I freaked last night? My blood pressure didn't show any signs of stress. The BP was about 120/70 and my pulse was in the 68 range just before I took the bullet.
We'll see how it goes from here on out. Life goes on.
Last Sunday, the donor started doing chemo to make his body produce excess bone marrow stem cells. Yesterday he was hooked up to an aphoresis machine with an IV in each arm. The machine pulled blood out of one arm, filtered it to separate the stem cells from his blood, and then returned most of his blood to his other arm. I estimate this procedure took 5 hours. So, chemo for 5 days and then hell for 5 hours. Amazing.
In my case, the chemo and prep started last Monday with Total Body Irradiation at 11am Friday morning. Basically they bombard your body laterally with radiation from head to toe over about a 20 minute period, then they literally turn the gurney around and do the same to the other side of your body as if you were a rotisserie chicken or shawarma/doner kabab. There was no "Shake and Bake" used. Apparently the effects of the radiation can be quite devastating for some patients. The techs commented that I performed in the 95th percentile because many people apparently pass out during the process. Yes, I felt something, but I can't exactly tell you if what I felt was psychological (knowledge that it was radiation emanating from the source of sound), or whether there was an actual physical sensation. It was quite subtle.
Anyway, I went to sleep during the process and wasn't pleased that they kept waking me up every 2 minutes to see if I was OK. It wasn't high stress for me. WAY easier than getting me to go into an MRI.
Ok, so I bailed from the radiation facility at about 12:30 and my buddies Suzie and Pam took me home for a couple of hours. Thanks Suzie and Pam!
Suzie picked me back up at a little after 2:30pm so I could check into the hospital for the transplant. I clocked in at almost exactly 3pm and watched TV until our friend Chao arrived for a visit. Chao's a good guy. (We talked about Ed a lot.)
Soon afterward, Ed arrived from Vancouver with smuggled Chinese food. Unfortunately it was from Panda Express (food court junk). Not to my appetite. I ordered hospital food. (The UW hospital has "room service" and a complete menu. Not bad, but slightly industrial.)
Chao had a dinner date with friends, so Ed and I watched TV for a few hours until about 11pm, whereupon it was announced that my transplant cells would arrive at midnight. Hmmm..... two hours earlier than previously advised.
Sure as heck, about 5 minutes before midnight, two bags of Sangria arrived, slightly chilled to 74F. They were individually hung from their "botas" and infused into my central line over the next three and three quarters hours.
Unfortunately, they checked on me every 15 minutes or so to make sure I wasn't having a reaction, and when they were finally done at about 4:30, Ed was snoring like a cartoon character. I didn't get much sleep last night and they allowed me to check out of the facility at noon today. I was there for only 21 hours.
Today has been a bit of a recovery day. People ask me how I feel and I have to say I'm surprisingly good, considering what everyone has told me I should feel like. Yes, I'm sleepy and slightly worn out, but overall I feel healthy enough.
Heck, we went out for dinner with friends tonight. I must feel adequate.
Was I freaked last night? My blood pressure didn't show any signs of stress. The BP was about 120/70 and my pulse was in the 68 range just before I took the bullet.
We'll see how it goes from here on out. Life goes on.
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