Greetings one and all...i'ts been a long time since me last entry. Let's attempt to catch you up with me world.
On Tuesday last I was pleasantly surprised with a visit from my dear friends Laura and Rich who left me with a care package and more words of encouragement (Rich went through his BMT earlier this year and educates me on what to expect as me body changes). I'm still not drinking as well as I should but getting better and I must admit me tasters are slowly returning - very slow but returning none the less. Me #'s are doing well with nothing too exciting to report. Actually that's not true...one of me most recent meds finally came through and at the paltry cost of $3.600! 60 pills for 3.600! I'll let you do the math regarding individual cost of each pill. Speaking of meds, I begin a new one today which only cost approx $670. Unlike the present state of the financial institutions, I don't foresee the Pharmaceuticals needing a bailing out.
I earned me first day away from the ITA on Sunday which meant no getting up for a scheduled appointment. I got to sleep in a wee bit longer and basically be lazy for the day. Robyn and I enjoyed kickin' it at the crib watching the Ryder Cup (golf for those of you who aren't familiar). It was one of my favorite days up here. Un fortunately it wasn't long enough. I look forward to your next w/e sweetie!
Unless there is a change it appears I won't need to be seen daily in ITA. Me new schedule will be M/W/F. I'm growing up.
Well kids, all for now and as usual...be good and above all be healthy!
-me
Thanks again for all your feedback folks - wishing you all the best.
Monday, September 22, 2008
Wednesday, September 17, 2008
She made me do it
Heather made me eat crappy tasting stuff and nagged me about drinking fluids......ALL weekend. I don't remember signing up for this? I wonder how far I could get if I ran away? Or at least that's what he seemed to be thinking.This is Heather writing and I'm so glad I could hang with him for the weekend.
XXXXOOO
Heather
Saturday, September 13, 2008
13 Sept-
This week my mom was relieved from her caregiver status from Thursday to Sunday. In her place is a good friend Heather. For those of you who don't know, Heather's the individual who got this Blog going for Robyn and I. Thanks Heather!
As for the latest...just another day in paradise. Not much change in my world...get up early for my daily visits to ITA for lab draws, fluids and Purseys bag change. Oh yes, Pursey and I are still the envy of all. Not a day goes by someone doesn't stop me for some fashion advice and ask me "where does one find such a fashionable statement to where over ones shoulder?" Of course I tell them they have to belong to an exclusive club which has a killer reputation. I slay me.
My numbers continue to do well sans my Creatinine - relates to kidney funcion - which is still to high. We're going to see if by reducing and altering some of my current meds that we may possibly see an improvement in those numbers considering my fluid intake is much improved. Only time will tell.
As of yesterday I think me tastebads are attempting to be buds again. Not to say everything tastes great again but at least some foods are producing some faintly familiar flavors. I'm sure I would be much further along if it were not for me bout of Thrush. For those of you who aren't familiar with thrush it's basically a yeast infection on your tongue (what a lovely thought/vision). It not only looks disgusting but continues to alter my taste. And I thought I had good taste, at yeast I thought I did. To combat the thrush I've been given these wafer like pills to place on my tongue to melt and of course those taste like cardboard...mmmm cardboard!
Enough for now. I need to get some vittles. Until next time...stay hungry and healthy!
-me
This week my mom was relieved from her caregiver status from Thursday to Sunday. In her place is a good friend Heather. For those of you who don't know, Heather's the individual who got this Blog going for Robyn and I. Thanks Heather!
As for the latest...just another day in paradise. Not much change in my world...get up early for my daily visits to ITA for lab draws, fluids and Purseys bag change. Oh yes, Pursey and I are still the envy of all. Not a day goes by someone doesn't stop me for some fashion advice and ask me "where does one find such a fashionable statement to where over ones shoulder?" Of course I tell them they have to belong to an exclusive club which has a killer reputation. I slay me.
My numbers continue to do well sans my Creatinine - relates to kidney funcion - which is still to high. We're going to see if by reducing and altering some of my current meds that we may possibly see an improvement in those numbers considering my fluid intake is much improved. Only time will tell.
As of yesterday I think me tastebads are attempting to be buds again. Not to say everything tastes great again but at least some foods are producing some faintly familiar flavors. I'm sure I would be much further along if it were not for me bout of Thrush. For those of you who aren't familiar with thrush it's basically a yeast infection on your tongue (what a lovely thought/vision). It not only looks disgusting but continues to alter my taste. And I thought I had good taste, at yeast I thought I did. To combat the thrush I've been given these wafer like pills to place on my tongue to melt and of course those taste like cardboard...mmmm cardboard!
Enough for now. I need to get some vittles. Until next time...stay hungry and healthy!
-me
Tuesday, September 9, 2008
Today was a long day @ ITA. We were there from 1030 to 1550. Nothing really new to report regarding my lab draws. The #'s continue to flatulate/fluctuate - up one day, down a bit the next. It's to be expected.
Todays counts are as follows:
Everything seems to be going ducky according to the Quacks/Medical folks. My only real issue is my lack of fluid intake. You see I'm supposed to be drinking up to three litres a day to help flush the organs esp. Mr Kidney and I've been only managing up to one litre a day. This will not do because I'm not going through all this just to be put on Dialysis down the road! Suffice it to say my fluid intake is much improved - I'm just a peein' macheein'.
Anywho kids, It's late and yours truly is famished so I think it's time to head HOME to find out what tastes bad tonight and force it down. Yummers.
Be good and stay healthy.
-me
Todays counts are as follows:
- WCT - 5.0
- HCT - 34.7
- PLTS - 114
Everything seems to be going ducky according to the Quacks/Medical folks. My only real issue is my lack of fluid intake. You see I'm supposed to be drinking up to three litres a day to help flush the organs esp. Mr Kidney and I've been only managing up to one litre a day. This will not do because I'm not going through all this just to be put on Dialysis down the road! Suffice it to say my fluid intake is much improved - I'm just a peein' macheein'.
Anywho kids, It's late and yours truly is famished so I think it's time to head HOME to find out what tastes bad tonight and force it down. Yummers.
Be good and stay healthy.
-me
Saturday, September 6, 2008
Wow! Two blog entrails in one day...This is basically a supplement to Robyns from earlier...another am @ ITA for lab draws and fluids. I'm eating a wee bit better each day and walking the area more for some exercise. As a matter of fact I've been walking to and fro my daily appointments. The walk isn't that far (approximately .25 mile). I get a wee bet winded but it's all good.
The Staff feels I'm progressing well but for me not fast enough! All in good time me boy, all in good time.
We had a little bit 'o excitement when we returned to the HOME apartments. We were greeted by fire engines and the building was evacuated. It appears someone on the third floor left something on the burner which set off the alarm.
Time to continue my walk for the pm. Until next time...stay healthy!
-me
The Staff feels I'm progressing well but for me not fast enough! All in good time me boy, all in good time.
We had a little bit 'o excitement when we returned to the HOME apartments. We were greeted by fire engines and the building was evacuated. It appears someone on the third floor left something on the burner which set off the alarm.
Time to continue my walk for the pm. Until next time...stay healthy!
-me
Hi it's Robyn today. I got here Thurs night and was pleased to see Curt's progress. Although he is VERY thin and weak (looks very much like he did in Jan), he looks so much better than he has in the past month. I would just like to share 2 things.
What Curt has been through is too difficult to describe in words. I have a friend who just went through this in March and he tried to explain it to us on several occasions; but unless you've live it or watched someone live through it, you can't grasp the severity of this procedure. Curt's courage and strength coupled with his sense of humor and positive attitude is awe inspiring. This BMT made his cancer look like child's play. I don't know if anyone watched the 'Stand up 4 Cancer' special on all 3 networks last night; we did and it just brought to our attention again how truly lucky and blessed we are. We will both never be the same once we come out of this.
Secondly, I would like to reiterate what Curt has said previously on the blog. How grateful we are that Connie (Curt's Mom) is available and healthy enough to be here for us. If it wasn't for her I truly don't know what we would do or even if this procedure would have been a possibility. So THANK YOU Connie for your devotion and time.
Connie and I trade posts again tomorrow afternoon, but rest assured that Curt is on his way to getting back to SLO (not soon enough by my standards), but in the big scheme of things very soon.
Robyn
What Curt has been through is too difficult to describe in words. I have a friend who just went through this in March and he tried to explain it to us on several occasions; but unless you've live it or watched someone live through it, you can't grasp the severity of this procedure. Curt's courage and strength coupled with his sense of humor and positive attitude is awe inspiring. This BMT made his cancer look like child's play. I don't know if anyone watched the 'Stand up 4 Cancer' special on all 3 networks last night; we did and it just brought to our attention again how truly lucky and blessed we are. We will both never be the same once we come out of this.
Secondly, I would like to reiterate what Curt has said previously on the blog. How grateful we are that Connie (Curt's Mom) is available and healthy enough to be here for us. If it wasn't for her I truly don't know what we would do or even if this procedure would have been a possibility. So THANK YOU Connie for your devotion and time.
Connie and I trade posts again tomorrow afternoon, but rest assured that Curt is on his way to getting back to SLO (not soon enough by my standards), but in the big scheme of things very soon.
Robyn
Wednesday, September 3, 2008
I survived my first pm away from Hospital. It was definitely odd sleeping in a different bed after four? weeks in Hospital. Did not sleep well but figure I'll eventually get used to it.
In transitioning to my new digs I was reintroduced to my old pal "Pursey". For those of you who aren't familiar with Pursey, it was my first fashion statement I was proud to carry around. It contains meds on a constant drip. I don't know how long I'll be stuck with Pursey - only time will tell.
I had my first appointment at ITA this am (0800) for med draws and and an afternoon x-ray. I'll be visiting ITA daily for awhile until the #'s stabilize to Dr's satisfaction then the visits will taper off to every other day - less frequently as I progress and my needs regress.
I know I've probably said this before but it's amazing how weak my body has become and I weighed in @ 156 lbs today. Food still tastes bad but I'm doing my very best to force food down.
It's been a long day and it's time to head back to the HOME. Until next time...be healthy and wise.
-me
In transitioning to my new digs I was reintroduced to my old pal "Pursey". For those of you who aren't familiar with Pursey, it was my first fashion statement I was proud to carry around. It contains meds on a constant drip. I don't know how long I'll be stuck with Pursey - only time will tell.
I had my first appointment at ITA this am (0800) for med draws and and an afternoon x-ray. I'll be visiting ITA daily for awhile until the #'s stabilize to Dr's satisfaction then the visits will taper off to every other day - less frequently as I progress and my needs regress.
I know I've probably said this before but it's amazing how weak my body has become and I weighed in @ 156 lbs today. Food still tastes bad but I'm doing my very best to force food down.
It's been a long day and it's time to head back to the HOME. Until next time...be healthy and wise.
-me
Monday, September 1, 2008
It's been a long day but not without light at the end of the tunnel. I was given the thumbs up to be released tomorrow to the HOME apartments which will serve as my temporary residence until I officially vacate Stanford sometime in Nov?
I admittedly accept the latest news with mixed feelings. Glad to be moving on to the next phase but nervous to be away from the security blankey of nurses on hand. The Nurse staff has reassured me all will be well 'cus they're only a phone call away should any problem arise.
My primary caregiver performed her first bandage replacement today. Although she was nervous she preformed well and with a few more under her wing, she'll be teaching the nurses! You go Ma! Robyn and I couldn't do this without you and are forever grateful.
Ma was invited to a BBQ tonight hosted by the Hadleys - friends of the familia who live locally. I insisted she attend because it'll be a nice respit from me given she'll be spending lots 'o time with me these next two months.
My mouth is just about back to normal with only the slightest ulcer pain lingering on the sides of my tongue. It's truly amazing what those wacky little white blood cells can do when you have them. Robyn you'll be so surprised at my skin today as opposed to last week - like pm and am. I'm still fighting the eating bit due to the lack of taste but I force as much food down as I can but I tell ya brother, it aint easy.
In preparation for my impending move I'm having an item or two removed off my Trans-Pal (the pole that holds all my meds) daily. I originally had nine different lines going into me but now am down to three. Although they cut off the pain meds yesterday...OUCH!, I was given one tonight which is why my writing is all over the place. On that note me thinks me needs to get back to me room and lay down.
I miss you all and look forward to seeing your bright smiley faces and sharing a tear or two for being there for us and just caring enough to listen to an old man ramble.
Stay healthy
-me
I admittedly accept the latest news with mixed feelings. Glad to be moving on to the next phase but nervous to be away from the security blankey of nurses on hand. The Nurse staff has reassured me all will be well 'cus they're only a phone call away should any problem arise.
My primary caregiver performed her first bandage replacement today. Although she was nervous she preformed well and with a few more under her wing, she'll be teaching the nurses! You go Ma! Robyn and I couldn't do this without you and are forever grateful.
Ma was invited to a BBQ tonight hosted by the Hadleys - friends of the familia who live locally. I insisted she attend because it'll be a nice respit from me given she'll be spending lots 'o time with me these next two months.
My mouth is just about back to normal with only the slightest ulcer pain lingering on the sides of my tongue. It's truly amazing what those wacky little white blood cells can do when you have them. Robyn you'll be so surprised at my skin today as opposed to last week - like pm and am. I'm still fighting the eating bit due to the lack of taste but I force as much food down as I can but I tell ya brother, it aint easy.
In preparation for my impending move I'm having an item or two removed off my Trans-Pal (the pole that holds all my meds) daily. I originally had nine different lines going into me but now am down to three. Although they cut off the pain meds yesterday...OUCH!, I was given one tonight which is why my writing is all over the place. On that note me thinks me needs to get back to me room and lay down.
I miss you all and look forward to seeing your bright smiley faces and sharing a tear or two for being there for us and just caring enough to listen to an old man ramble.
Stay healthy
-me
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