Every two weeks, just like clockwork, the SCCA calls me to get a blood transfusion. They always call on Friday afternoon. They always schedule it like it was some kind of emergency over the weekend.
So they called at about 3pm today, and big DUH!. They wanted me to do a STAT transfusion of 2 units of whole blood. Their proposal - T&C on Friday afternoon with most of Saturday being transfused.
But Ed's coming home tonight and my brother and his hubby are flying in tomorrow for lunch. (Yeah, they're wacky that way.)
We've got stuff to do, so I told the SCCA to go away. We can do this Monday. Heck, if it's gonna be every 2 weeks like clockwork, we might as well screw up my Monday instead of my weekends with Ed. Let's allow the calendar to slide a bit.
They agreed to do a T&C on Sunday at my usual draw. The transfusion will be scheduled for Monday afternoon. Thankfully Ed will be here through Monday morning in case I slide down a slippery slope, but it shouldn't be a problem.
Personal opinion: They'll call me next week for platelets. I'm bruising like a 104 year old woman again.
You know what's odd? If I don't make any trips to Vancouver, I can actually drive my truck for a longer time than I can drive myself. 2 weeks on blood, 3 weeks on a full tank of fuel. The tank of fuel is only $40ish. The blood is like..... blood!
It seems I'm less efficient than an F150 with a V8 engine, but you can't start calling me Mr. Greenhouse Gas!
Friday, February 27, 2009
Tuesday, February 24, 2009
The line in the sand.
I had appointments at the SCCA today. It was a regular visit, but I was also to receive the results of my doctor's "line in the sand" testing. In the last week, he's challenged every possible myeloma test so we can move forward.
Tomorrow is Day 180. Yes, six months since the last transplant. Six months of treading water. Six months of curiosity. Six months of 'maybe'.
And now we have the answer in fairly definite terms. As previously reported, 100% of the bone marrow in me is somebody else's ---> mine now. As of this last test, Sangre d'Andre is dead and gone. Except for a special little bag in a liquid nitrogen bath, there is no more Andre blood on the planet. Even that will be gone soon.
But the bigger result is: There are no symptoms of MM. There are no residual indicators of MM. There are no markers that suggest it may be lingering. Every single test shows there is no cancer at all. Everything from ultra sensitive scientific testing to "lab researcher seat of the pants" tests show the MM is gone. Bye-bye! Good riddance. Don't let the door hit you in the ass on the way out. Gone.
So, I survived cancer. Now I just have to survive the cure. I have no immune system. I'm still not making new blood. Recent changes to my drug routine seem to be changing the picture though. Hopefully we'll turn the corner soon.
I feel better this month than I did last month, or the month before. Things are improving. They're working on it. Ed and I are working on it. We'll get through this even if it kills me.
Tomorrow is Day 180. Yes, six months since the last transplant. Six months of treading water. Six months of curiosity. Six months of 'maybe'.
And now we have the answer in fairly definite terms. As previously reported, 100% of the bone marrow in me is somebody else's ---> mine now. As of this last test, Sangre d'Andre is dead and gone. Except for a special little bag in a liquid nitrogen bath, there is no more Andre blood on the planet. Even that will be gone soon.
But the bigger result is: There are no symptoms of MM. There are no residual indicators of MM. There are no markers that suggest it may be lingering. Every single test shows there is no cancer at all. Everything from ultra sensitive scientific testing to "lab researcher seat of the pants" tests show the MM is gone. Bye-bye! Good riddance. Don't let the door hit you in the ass on the way out. Gone.
So, I survived cancer. Now I just have to survive the cure. I have no immune system. I'm still not making new blood. Recent changes to my drug routine seem to be changing the picture though. Hopefully we'll turn the corner soon.
I feel better this month than I did last month, or the month before. Things are improving. They're working on it. Ed and I are working on it. We'll get through this even if it kills me.
Thursday, February 19, 2009
Lyrics
I've been listening to this song on Sirius Hits for a while and finally decided to post the lyrics. Obviously the song moves me, but it surprises me that a the subject has made it to the Top 40 stations. It's not about sex, love, or getting high.
THRIVING IVORY
Angels On The Moon
Do you dream, that the world will know your name?
So tell me your name
And do you care, about all the little things or anything at all?
I wanna feel, all the chemicals inside I wanna feel
I wanna sunburn, just to know that I'm alive
To know I'm alive
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Do you believe, in the day that you were born?
Tell me, do you believe?
And do you know, that every day's
The first of the rest of your life?
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
This is to one last day in the shadows
And to know a brother's love
This is to New York City angels
And the rivers of our blood
This is to all of us, to all of us
So don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Yeah, you can tell me all your thoughts
About the stars that fill polluted skies
And show me where you run to
When no one's left to take your side
But don't tell me where the road ends
'Cause I just don't wanna know,
No I don't wanna know
Don't tell me if I'm dying
Don't tell me if I'm dying
Don't tell me if I'm dying
THRIVING IVORY
Angels On The Moon
Do you dream, that the world will know your name?
So tell me your name
And do you care, about all the little things or anything at all?
I wanna feel, all the chemicals inside I wanna feel
I wanna sunburn, just to know that I'm alive
To know I'm alive
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Do you believe, in the day that you were born?
Tell me, do you believe?
And do you know, that every day's
The first of the rest of your life?
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
This is to one last day in the shadows
And to know a brother's love
This is to New York City angels
And the rivers of our blood
This is to all of us, to all of us
So don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Yeah, you can tell me all your thoughts
About the stars that fill polluted skies
And show me where you run to
When no one's left to take your side
But don't tell me where the road ends
'Cause I just don't wanna know,
No I don't wanna know
Don't tell me if I'm dying
Don't tell me if I'm dying
Don't tell me if I'm dying
Monday, February 16, 2009
Transplant oddity
I've discussed this before, but I'll reiterate: In a limited way, bone marrow transplant patients acquire traits of their donors. The patient's old allergies may go away. The patient may gain the donor's allergies. Blood types may change. Gender may change at the chromosome level (but not otherwise).
My donor graft was a very close match of alleles. This means he and I follow a very similar line of hereditary variation. You could consider us Doppelgangers or twins at some biological level.
But there are differences because we're not clones. (Arguably, even clones vary.)
Last night, Ed and I believe we confirmed my first "derivative distinction" from the transplant. It's nothing worrysome. It's nothing that will be difficult to live with. In fact, it's a particularly funny one, considering.
We believe that my donor does not produce Aldehyde Dehydrogenase (ALDH2). Here's a section from Wikipedia on the topic.
That's right folks, I can't drink alcohol any more. I've tried enough times since the transplant to be VERY certain this is a fact. A simple glass with dinner turns me into a beet with a mild itch.
So, what's the coincidence of the day? Ed has the same problem. He always has.
And that's OK.
My donor graft was a very close match of alleles. This means he and I follow a very similar line of hereditary variation. You could consider us Doppelgangers or twins at some biological level.
But there are differences because we're not clones. (Arguably, even clones vary.)
Last night, Ed and I believe we confirmed my first "derivative distinction" from the transplant. It's nothing worrysome. It's nothing that will be difficult to live with. In fact, it's a particularly funny one, considering.
We believe that my donor does not produce Aldehyde Dehydrogenase (ALDH2). Here's a section from Wikipedia on the topic.
ALDH2 plays a crucial role in maintaining low blood levels of acetaldehyde during alcohol oxidation. In this pathway, the intermediate structures can be toxic, and health problems arise when those intermediates cannot be cleared (Crabb 2004). When high levels of acetaldehyde occur in the blood, symptoms of facial flushing, light headedness, palpitations, nausea, and general “hangover” symptoms occur . These symptoms are indicative of a disease known as “Asian Flush” or “Oriental Flushing Syndrome” (Thomasson 1991).
That's right folks, I can't drink alcohol any more. I've tried enough times since the transplant to be VERY certain this is a fact. A simple glass with dinner turns me into a beet with a mild itch.
So, what's the coincidence of the day? Ed has the same problem. He always has.
And that's OK.
Friday, February 13, 2009
Post - 13th
They did it all today.
I got a full series of blood tests, one unit of platelets, two units of whole blood, a complete drug evaluation/inventory by the pharmacy, and a dietary recommendation (my phosphorus is low).
The pharmacy thing was rather odd. They asked me to bring in ALL of my drugs. Not the drug list...... the actual drugs. So I carried an Igloo cooler around all day. I passed.
I don't think they'd do all this unless somebody was marking a line in the sand. I think Dr. B. put his foot down. This might be a good thing.
I got a full series of blood tests, one unit of platelets, two units of whole blood, a complete drug evaluation/inventory by the pharmacy, and a dietary recommendation (my phosphorus is low).
The pharmacy thing was rather odd. They asked me to bring in ALL of my drugs. Not the drug list...... the actual drugs. So I carried an Igloo cooler around all day. I passed.
I don't think they'd do all this unless somebody was marking a line in the sand. I think Dr. B. put his foot down. This might be a good thing.
Thursday, February 12, 2009
Friday the 13th
Today is the 12th, so this is the plan for tomorrow, Friday, Feb 13, 2009. No, I'm not superstitious.
I'll do a blood test at 10:30, then I'll get platelets at 11:00. While I'm getting platelets, they'll test and T&C my blood to see if I need a whole blood transfusion.
Yeah. Let's think about that. Platelets to keep me from bleeding everywhere all the time. Whole blood so I don't turn into a Zombie. It hasn't been very long since the last transfusion(s). This really feels like putting fuel in my truck. Read the guage, pull in, swipe the card, insert the nozzle, wait for the pumps to stop, get the receipt, drive away until the gauge reads low again. Rinse, repeat.
The platelets are on the plan. The whole blood is a 'maybe'.
Regardless, recognize that if this is part of their plan, if they see repetitive negative responses in my blood counts, if they're entertaining contingency plans of this sort, THINGS AREN'T GOING WELL.
Did I mention that I got a 'hit and run' with my regular oncologist, Dr. B., in the hallway? (A 'hit and run' is when you stumble across your doc in a common area and he makes an effort to talk to you.) I said, "Hello" and he said, "Hey! Got a minute?"
He recited my symptoms from memory. He recited my responses from memory. Then he told me about his discussions with Dr. D(ifficult). He also spoke about his recent discussions with the new doc on rounds (Dr M.). He made himself clear to the new doc, and to me, that we've got to look at another side of this blood problem, and we've got to do it NOW.
So, on Tuesday, Feb 17, I get another bone marrow biopsy. Yup, more Black & Decker in my hips. New holes, new scars, new fun.
I'm not looking forward to the procedure, but I'll welcome the results. We need to find out what's going on. From what I gather, there's a chance that the graft didn't proliferate (for lack of a better term). In other words, 100% of what's there is donor cells, but there might not be very much there.
To simplify, 4 cells could equal 100% of what's available, but if I need 4000 cells to be there, then I still have a big problem. Yes, that's a tremendous oversimplification and the numbers I've used are complete speculations, but there are a lot of things Dr. B. wants to find out from this process.
I wanna know too. Spring is coming. I wanna make some blood.
I'll do a blood test at 10:30, then I'll get platelets at 11:00. While I'm getting platelets, they'll test and T&C my blood to see if I need a whole blood transfusion.
Yeah. Let's think about that. Platelets to keep me from bleeding everywhere all the time. Whole blood so I don't turn into a Zombie. It hasn't been very long since the last transfusion(s). This really feels like putting fuel in my truck. Read the guage, pull in, swipe the card, insert the nozzle, wait for the pumps to stop, get the receipt, drive away until the gauge reads low again. Rinse, repeat.
The platelets are on the plan. The whole blood is a 'maybe'.
Regardless, recognize that if this is part of their plan, if they see repetitive negative responses in my blood counts, if they're entertaining contingency plans of this sort, THINGS AREN'T GOING WELL.
Did I mention that I got a 'hit and run' with my regular oncologist, Dr. B., in the hallway? (A 'hit and run' is when you stumble across your doc in a common area and he makes an effort to talk to you.) I said, "Hello" and he said, "Hey! Got a minute?"
He recited my symptoms from memory. He recited my responses from memory. Then he told me about his discussions with Dr. D(ifficult). He also spoke about his recent discussions with the new doc on rounds (Dr M.). He made himself clear to the new doc, and to me, that we've got to look at another side of this blood problem, and we've got to do it NOW.
So, on Tuesday, Feb 17, I get another bone marrow biopsy. Yup, more Black & Decker in my hips. New holes, new scars, new fun.
I'm not looking forward to the procedure, but I'll welcome the results. We need to find out what's going on. From what I gather, there's a chance that the graft didn't proliferate (for lack of a better term). In other words, 100% of what's there is donor cells, but there might not be very much there.
To simplify, 4 cells could equal 100% of what's available, but if I need 4000 cells to be there, then I still have a big problem. Yes, that's a tremendous oversimplification and the numbers I've used are complete speculations, but there are a lot of things Dr. B. wants to find out from this process.
I wanna know too. Spring is coming. I wanna make some blood.
Monday, February 09, 2009
Diet
The last week has been an odd thing. The trend is toward feeling better, however, a spontaneous sampling on any given hour might show that I'm WAY in the dumps. It may also show that I'm amped and feeling like a marathoner. The data points don't make a very smooth curve. If I blogged hour to hour, you'd think I was bipolar.
What I have to do is recognize the source of the distress/recovery. Unfortunately it's my gut (where the majority of my GVHD is). It's my fault. I've got to stop pushing the performance envelope with tasty/spicy foods and large vegetable content. Unfortunately I'm not exercising enough willpower to control my both Ed's and my personal desires. We both like tasty food.
If I stick to oat meal, Cream of Wheat, instant mashies, rice, and plain meats with soy sauce or plain salt, I'm cool. In fact, I don't even know my lower GI exists.... but if I go for fried meats and simple black pepper, leafy green veggies, or (heaven forbid) coffee, I'll spend part of my future regretting my past. I've been to purgatory and it has porcelain fixtures.
Some of you know my palate, and this is NOT fun. I need to stick with a diet even the Norse would think was dull. Picture Odin offering me a bowl of boiled whitefish and a potato with a little bit of sea salt.
My response? "Please sir, may I have some more?"
(Yes, the little movies in your mind just went flicker-flicker-flicker. Huh?)
What I have to do is recognize the source of the distress/recovery. Unfortunately it's my gut (where the majority of my GVHD is). It's my fault. I've got to stop pushing the performance envelope with tasty/spicy foods and large vegetable content. Unfortunately I'm not exercising enough willpower to control my both Ed's and my personal desires. We both like tasty food.
If I stick to oat meal, Cream of Wheat, instant mashies, rice, and plain meats with soy sauce or plain salt, I'm cool. In fact, I don't even know my lower GI exists.... but if I go for fried meats and simple black pepper, leafy green veggies, or (heaven forbid) coffee, I'll spend part of my future regretting my past. I've been to purgatory and it has porcelain fixtures.
Some of you know my palate, and this is NOT fun. I need to stick with a diet even the Norse would think was dull. Picture Odin offering me a bowl of boiled whitefish and a potato with a little bit of sea salt.
My response? "Please sir, may I have some more?"
(Yes, the little movies in your mind just went flicker-flicker-flicker. Huh?)
Thursday, February 05, 2009
Back in Seattle.
I'm in Seattle this afternoon as I have an appointment at the SCCA tomorrow. My little journey was pleasant, but I really don't care for packing, unpacking, packing, and unpacking. Ed and I are figuring the details of this out. Two sets of clothes and two of everything else should resolve any issues with having two lives.
My CMV seems to be resolved. They took me off Foscarnet yesterday and we will probably change my hydration slightly tomorrow. I'm hoping we can go down to 500cc total from my current 750. Prednisone levels are still ~50mg/day. GI activity is normal. Early satiety continues.
On the bright side, I finally stumbled on the recipe for a "Bacon Explosion". Click the link if you don't eat vegan, vegetarian, Kosher, or Halal.
My buddy Art did one of these recently. He spoke of 'overdose' afterward. Must be good.
My CMV seems to be resolved. They took me off Foscarnet yesterday and we will probably change my hydration slightly tomorrow. I'm hoping we can go down to 500cc total from my current 750. Prednisone levels are still ~50mg/day. GI activity is normal. Early satiety continues.
On the bright side, I finally stumbled on the recipe for a "Bacon Explosion". Click the link if you don't eat vegan, vegetarian, Kosher, or Halal.
My buddy Art did one of these recently. He spoke of 'overdose' afterward. Must be good.
Monday, February 02, 2009
Energy bar.
I had lots of energy today. I met with a real estate agent about the house, got the truck tested and registered, snooped around the hardware store, visited with the neighbor, reworked the graphics on the truck, lots of stuff.......
GETTING blood is problematic. HAVING blood is really cool. It's amazing what the red sauce can do for a person.
Tomorrow is a long day that will hopefully culminate in a Vancouver arrival. I think Ed's eager to see me since he packed my bag last night.
The truck is loaded. I have a few more things to collect and I'll be ready to roll.
GETTING blood is problematic. HAVING blood is really cool. It's amazing what the red sauce can do for a person.
Tomorrow is a long day that will hopefully culminate in a Vancouver arrival. I think Ed's eager to see me since he packed my bag last night.
The truck is loaded. I have a few more things to collect and I'll be ready to roll.
Sunday, February 01, 2009
Venting
Ed got home about 9pm on Friday night. Life was good.
Saturday turned into a giant series of SCCA errors again. I really don't know what to do about it besides document it for posterity. Skip the rest of this post if you don't want to hear me belly-ache.
-----------
At about 9am on Saturday, Ed an I appeared at the SCCA for a blood draw and a T&C. Then we went to breakfast.
At 10:30, we got a call requesting my appearance at noon for 2 units of blood. We finished breakfast, picked up some things at home, and appeared at the OK Corral (where the wireless internet was down hard).
AN HOUR later,they called me to a room. Yeah, we sat in the isolation area with masks on for 60 minutes. The room they put us in is not an "isolation room". I've been on their official "respiratory isolation" list for more than 4 continuous months. The fact that I walk around the facility with a pink facemask on doesn't seem to register with them. It's their facemask, their rule, their policy. I comply with their rules as soon as I enter the facility.
I brought my condition to their attention AGAIN. After some consternation as to whether they had an isolation room available, they stuck us in another room. The room had not been fully serviced, so I have my doubts about its qualifications as an iso.
Let me explain: They want me in an iso room so I don't infect others. Then they stick me in a room with exposed infectious agents. Two strikes on Saturday. Who's infecting who?
At about 1:30 they announced that my blood hadn't been delivered yet. Then they took my blood pressure.
The drugs must work quite well. It was only 127/81.
The transfusion started at about 1:45. 2 units of blood take 4 hours to infuse. The SCCA closes at 5p on Saturdays. Do the math. Solution? Turn up the pump!
At 5:08pm, Ed and I were in the car. The parking garage was closed. Yeah, the gates were down. The attendant made some things happen for us. He was a very helpful and cooperative guy. He must be quite familiar with patient frustration.
Anyway, I have energy because I have blood again. I feel like doggie doo because of the process.
We went to Chang's Gourmet for dinner. I ate too many leafy green veggies. I loved them yesterday. I hate them today.
Scales of Justice, and all that.
Time to move on. Monday morning is another day.
Oddity du jour: I just checked the spelling on this message. Blogger's spell checker says the word "internet" is incorrectly spelled. A second check shows that "Blogger's" is also incorrect. Huh?
Saturday turned into a giant series of SCCA errors again. I really don't know what to do about it besides document it for posterity. Skip the rest of this post if you don't want to hear me belly-ache.
-----------
At about 9am on Saturday, Ed an I appeared at the SCCA for a blood draw and a T&C. Then we went to breakfast.
At 10:30, we got a call requesting my appearance at noon for 2 units of blood. We finished breakfast, picked up some things at home, and appeared at the OK Corral (where the wireless internet was down hard).
AN HOUR later,they called me to a room. Yeah, we sat in the isolation area with masks on for 60 minutes. The room they put us in is not an "isolation room". I've been on their official "respiratory isolation" list for more than 4 continuous months. The fact that I walk around the facility with a pink facemask on doesn't seem to register with them. It's their facemask, their rule, their policy. I comply with their rules as soon as I enter the facility.
I brought my condition to their attention AGAIN. After some consternation as to whether they had an isolation room available, they stuck us in another room. The room had not been fully serviced, so I have my doubts about its qualifications as an iso.
Let me explain: They want me in an iso room so I don't infect others. Then they stick me in a room with exposed infectious agents. Two strikes on Saturday. Who's infecting who?
At about 1:30 they announced that my blood hadn't been delivered yet. Then they took my blood pressure.
The drugs must work quite well. It was only 127/81.
The transfusion started at about 1:45. 2 units of blood take 4 hours to infuse. The SCCA closes at 5p on Saturdays. Do the math. Solution? Turn up the pump!
At 5:08pm, Ed and I were in the car. The parking garage was closed. Yeah, the gates were down. The attendant made some things happen for us. He was a very helpful and cooperative guy. He must be quite familiar with patient frustration.
Anyway, I have energy because I have blood again. I feel like doggie doo because of the process.
We went to Chang's Gourmet for dinner. I ate too many leafy green veggies. I loved them yesterday. I hate them today.
Scales of Justice, and all that.
Time to move on. Monday morning is another day.
Oddity du jour: I just checked the spelling on this message. Blogger's spell checker says the word "internet" is incorrectly spelled. A second check shows that "Blogger's" is also incorrect. Huh?
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