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..
Thursday, April 22, 2010
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...
Saturday, March 27, 2010
Dex and Atrial Fibrilation...3/26
Another stellar day in the real world..Or so the tell me...As previously bloggedated, I did the Cytoxin chemo on Monday with 4 days of 40mg of Dexamethasone steroids following..Well as had happened once before as I came off the Dex,,My heart went into an Atrial Fib rhythm that makes the hearts 2 parts out of sync..Makes for a wierd feeling. Last time they zapped me 3 times to get it back to normal..This time we called and did their call first adn see what to do..Of course they said to call 911.....Uh Uh...not going to theUof W in an ambulance..Sorry, not my style...Drove (well, the wiffers did) with no problems..Onlyu took 2 tries to get me "normal" this time. S no mroe Dex for me..ever...They gots other stuff I can take...
Now maybe I can sleep tonight witht the Ambien they gave me..No real Rem sleep in 4 days...
Almost got there Wed after a "Brownie" graciously given me to try...Hmmmmm ..Flashbacks to the 60's.
So on to the daily blood tests and Growth factor shots till the cells are mobilized and they do the harvest likely on Fri or the weekend...That parts easy ...thank goodness...
sees ya.
Now maybe I can sleep tonight witht the Ambien they gave me..No real Rem sleep in 4 days...
Almost got there Wed after a "Brownie" graciously given me to try...Hmmmmm ..Flashbacks to the 60's.
So on to the daily blood tests and Growth factor shots till the cells are mobilized and they do the harvest likely on Fri or the weekend...That parts easy ...thank goodness...
sees ya.
Wednesday, March 24, 2010
March 24th..Pre Harvest Chemo
Monday they were so kind as to give me a quart of Cytoxin chemo poison to nuke me in preparation for the stem cell harvest next week. Put me down and out for 36+ hrs...
You probably don't want to know all the good stuff that can come out of you when they give you the really good chemo and for how long....trust me..not a fun 2 days. Need to do it to get the Myeloma numbers down to zero as much as possible or so hey tell me...
Numbers are good and as expected and now Wed I am feeling pretty good and even finished a tranny this afternoon.
Taking 4 times the Dex steroids and getting growth factor shots for 4 days to get the cells out of the marrow. Should be a week till harvest time and that will be an easy 2 to 4 days.
Feeling better and doin as well as can be expected overall...
On to next weeks excitement...
You probably don't want to know all the good stuff that can come out of you when they give you the really good chemo and for how long....trust me..not a fun 2 days. Need to do it to get the Myeloma numbers down to zero as much as possible or so hey tell me...
Numbers are good and as expected and now Wed I am feeling pretty good and even finished a tranny this afternoon.
Taking 4 times the Dex steroids and getting growth factor shots for 4 days to get the cells out of the marrow. Should be a week till harvest time and that will be an easy 2 to 4 days.
Feeling better and doin as well as can be expected overall...
On to next weeks excitement...
Friday, March 19, 2010
Hickman Catheter installed Mar 18th
Thursday was another interesting day. Had to go the the U of Wash by 7am ( yuk) to get the central line put in and my port taken out. Not even any coffee beforehand....Do these people realize what they put us through??
The port was used for chemo so my veins wouldn't get trashed with the chemo. It was put in my left chest right after diagnosis and worked well.
They need a large bore central line tied into my veins to take and give blood and for the stem cell harvest. It was put in my right side chest and the port taken out during the same operation. Conscious sedation is what it is called and I certainly was conscious this time. The last 2 times, I didn't remember a thing, but they evidently didn't give me such a large dose this time..remember chatting with the nurse and feeling some "work: being done...kinda cool.
Tired and sore today (Fri), but feel better this afternoon.
Went to get taught how to flush the Hickman and change the dressing this afternoon.
Fortunately the RN I live with knows how to do this stuff and I don't have to worry about it.
Flush it daily and change dressing weekly. Still can shower with it and they gave me a little necklace to secure/hang it with to keep from accidentally pulling it out. Hmmm..Maybe I can fill a syringe with coffee and mainline it along with some 90 wt gear oil so I don't go into with drawls.
That's all till Monday's chemo for 8 hrs to start the cell mobilization.
The port was used for chemo so my veins wouldn't get trashed with the chemo. It was put in my left chest right after diagnosis and worked well.
They need a large bore central line tied into my veins to take and give blood and for the stem cell harvest. It was put in my right side chest and the port taken out during the same operation. Conscious sedation is what it is called and I certainly was conscious this time. The last 2 times, I didn't remember a thing, but they evidently didn't give me such a large dose this time..remember chatting with the nurse and feeling some "work: being done...kinda cool.
Tired and sore today (Fri), but feel better this afternoon.
Went to get taught how to flush the Hickman and change the dressing this afternoon.
Fortunately the RN I live with knows how to do this stuff and I don't have to worry about it.
Flush it daily and change dressing weekly. Still can shower with it and they gave me a little necklace to secure/hang it with to keep from accidentally pulling it out. Hmmm..Maybe I can fill a syringe with coffee and mainline it along with some 90 wt gear oil so I don't go into with drawls.
That's all till Monday's chemo for 8 hrs to start the cell mobilization.
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