Tired tired tired..Cant eat..drugs let me sleep some..this sucks and we aint hit bottom yet till day 8 or 10...Can take a 2 block walk and feel better. Nothing tastes good and drinking only cold water tastes good.. Then what little goes down, comes right out the backside..
Maybe they can stop that tomorrow..got a kidney ultrasound tomorow for some reason..their wish is my command...Gonna take mor pills says she who must be obeyed, so later.
Monday, April 26, 2010
Saturday, April 24, 2010
Day +2 Feelin mostlyOK
Too tired to post yesterday...Just plain tired with no energy and could only lay there till beddy by time when the sleepy pills took over.
My numbers are dropping as they are supposed to gradually down to nothing.
Will gadually get worse till the cells re-engraft later next week.
So for now its try to eat...seems to be a problem...Dont want to eat or drink anything presently.
They gave me a hydration pump yesterday to feed me fluids here in the evenings, as I dont seem to drink as much fluids as they want. Gotta keep the kidneys flushed out.
So basically..I be tired and just wanna lay there doing nothing...Not being one to just lay around, This kinda sucks overall...It will get better eventually, so on we go......
My numbers are dropping as they are supposed to gradually down to nothing.
Will gadually get worse till the cells re-engraft later next week.
So for now its try to eat...seems to be a problem...Dont want to eat or drink anything presently.
They gave me a hydration pump yesterday to feed me fluids here in the evenings, as I dont seem to drink as much fluids as they want. Gotta keep the kidneys flushed out.
So basically..I be tired and just wanna lay there doing nothing...Not being one to just lay around, This kinda sucks overall...It will get better eventually, so on we go......
Thursday, April 22, 2010
Day Zero..Transplant Day
Finally we are on the home stretch..A long strectch, but heading toward the end nevertheless.
Yesterday was supposed to be a day of rest..instead the night and day was spent fighting nausea and not wanting to eat or drink..4 kinds of anti nausea meds and I stilll puked in Wed morning and this norning..Feel wimpy and cold and tired, but functional.
Still in outpatient mode at out apartment, so all is according to the master plan..(going to the hospital is not what we want)
Today we went to the infusion room at 8:30 and got some hydration and about 18 million cell back into me..Wierd..They freeze the cells in a DMSO solution to -30 ..Warm then up and feed them back IV..Now the Wif says I smell like a big old Fir tree I am told..DMSO is a derivitive of wood pulp . Just glad I dont have a sense of smell. 4 hrs of ydration, a ct scan and 3 naps...But feel 1/2 human currently and even ate some peaches and cottage cheese...They say it will geet worse after few days, but we will see. I typically fail fast and recover soon it seems...Got home at 6PM...long day. So now just have to let the little stemmy celc do there thing and get the bone marrow back to working..dont know what numbers they want yet, but looking fwd to it for sure.
Thanks for caring group..
Yesterday was supposed to be a day of rest..instead the night and day was spent fighting nausea and not wanting to eat or drink..4 kinds of anti nausea meds and I stilll puked in Wed morning and this norning..Feel wimpy and cold and tired, but functional.
Still in outpatient mode at out apartment, so all is according to the master plan..(going to the hospital is not what we want)
Today we went to the infusion room at 8:30 and got some hydration and about 18 million cell back into me..Wierd..They freeze the cells in a DMSO solution to -30 ..Warm then up and feed them back IV..Now the Wif says I smell like a big old Fir tree I am told..DMSO is a derivitive of wood pulp . Just glad I dont have a sense of smell. 4 hrs of ydration, a ct scan and 3 naps...But feel 1/2 human currently and even ate some peaches and cottage cheese...They say it will geet worse after few days, but we will see. I typically fail fast and recover soon it seems...Got home at 6PM...long day. So now just have to let the little stemmy celc do there thing and get the bone marrow back to working..dont know what numbers they want yet, but looking fwd to it for sure.
Thanks for caring group..
Tuesday, April 20, 2010
Day -2...Melpahaln day
Today is the infusion of "weed killer" to nuke the bone marrow into extinction.
Easy so far..Sit here and catch up on email and chew ice chips for 3 hrs so my mouth wont get sore hopefully...I think I never want to see another hunk of ice ever again and I still have several hrs to go yet...The melph is nasty stuff in many ways and trust me..you dont want to know all the details of what it will do to me..
Should feel OK for 1 or 2 days they say and then its downhill from there for a bit.
Moved into our new tiny apartment for the next month..800 sq feet after being used to 2800...
so afr so good..the wif & I are still on speaking terms...see ya
Easy so far..Sit here and catch up on email and chew ice chips for 3 hrs so my mouth wont get sore hopefully...I think I never want to see another hunk of ice ever again and I still have several hrs to go yet...The melph is nasty stuff in many ways and trust me..you dont want to know all the details of what it will do to me..
Should feel OK for 1 or 2 days they say and then its downhill from there for a bit.
Moved into our new tiny apartment for the next month..800 sq feet after being used to 2800...
so afr so good..the wif & I are still on speaking terms...see ya
Friday, April 9, 2010
- 12 days and counting
The 20th of April is transplant day for sure...well at least unless I get sick in the meantime or something...Running a 99 to 100 temp, so gotta watch myself, stay hydrated and secluded for the most part.
They will nuke me with a chemo called Malphalan which I am calling weed killer since it sounds like something Ortho would sell (thanks for that Karen)...That stuff will kill off the bone marrow.
1 rest day after and on the 22nd they will reintroduce a portion of my stem cells. That is day 0, or as some call it their new birthday..Kills all my childhood and lifelong immunities as well.
Till then I am gaining strength gradually, and feeling a bit better each day.
Also, as with most people..I started to lose my hair. I now know what they mean when they say your hair hurts. After 34 years I had to shave my beard..Hurt to touch it..Man do I look funny..Rennie (my wife) just stares and shakes her head..We have been married 32 yrs..do the math.
Next will be the to cut my hair soon I think, when it starts falling out massively..Weird stuff for sure. Just glad I am a guy since it doesnt matter so much ...Worth it in the long run though.
Thats all for now. Next report around the 20th or so I suspect.
They will nuke me with a chemo called Malphalan which I am calling weed killer since it sounds like something Ortho would sell (thanks for that Karen)...That stuff will kill off the bone marrow.
1 rest day after and on the 22nd they will reintroduce a portion of my stem cells. That is day 0, or as some call it their new birthday..Kills all my childhood and lifelong immunities as well.
Till then I am gaining strength gradually, and feeling a bit better each day.
Also, as with most people..I started to lose my hair. I now know what they mean when they say your hair hurts. After 34 years I had to shave my beard..Hurt to touch it..Man do I look funny..Rennie (my wife) just stares and shakes her head..We have been married 32 yrs..do the math.
Next will be the to cut my hair soon I think, when it starts falling out massively..Weird stuff for sure. Just glad I am a guy since it doesnt matter so much ...Worth it in the long run though.
Thats all for now. Next report around the 20th or so I suspect.
Friday, April 2, 2010
Stem Cell Harvest Day-April 2nd
Yee Haw world...Finally after 10 days of shots to mobilize the cells, the magic numbers came up on the slot machine and I spent 4 hrs hooked up the the Apheresis machine (fancy cool centrifuge) and they rotated the blood thru and separated those particular cells from the rest of them...Doc's want 10 million so there are enough for 2 transplants..I told him I wanted 15 mil, so there were enough for 3...He laughed at my theory and said we will see...
Been without immune system for a week till the white cells came back to normal...Good bone marrow works wonders at recuperating ya..
Got 36 million cells...More than enough for whatever comes down the road, as long as they do what I told them anyway...3 have been done before, so whats the big deal if there are plenty...
Amazing how stuck some people get in their"this is the only way" world...I have enough ocd I guess, to want to plan waay too far ahead...just in case...Amy way, I seem to be a patient that questions a bit more than they are used to...tuff cookies world...Its my body and ultimate choices for how I proceed..I gotts to plan 10 to 15yrs out instead of laying down and accepting the usual .
There are human embryo transplants being done in other parts of the world, and despite the religious aspects to that particular process..It happens and many times saves lives and quality of life..(thanks Denise)..ok, off the soapbox..
Waiting for the 20th or so for the next step of the transplant itself, so will shut up for a bit and enjoy a non drug few weeks...now to catch up on teh messages I have been too drugged out to read..thanks world...
Been without immune system for a week till the white cells came back to normal...Good bone marrow works wonders at recuperating ya..
Got 36 million cells...More than enough for whatever comes down the road, as long as they do what I told them anyway...3 have been done before, so whats the big deal if there are plenty...
Amazing how stuck some people get in their"this is the only way" world...I have enough ocd I guess, to want to plan waay too far ahead...just in case...Amy way, I seem to be a patient that questions a bit more than they are used to...tuff cookies world...Its my body and ultimate choices for how I proceed..I gotts to plan 10 to 15yrs out instead of laying down and accepting the usual .
There are human embryo transplants being done in other parts of the world, and despite the religious aspects to that particular process..It happens and many times saves lives and quality of life..(thanks Denise)..ok, off the soapbox..
Waiting for the 20th or so for the next step of the transplant itself, so will shut up for a bit and enjoy a non drug few weeks...now to catch up on teh messages I have been too drugged out to read..thanks world...
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