DAY 9 - 010407
[Patient Update: OK, I'm falling behind on my posting times. By the time most of you read this one Robbi will be getting today's update ready.
Read Robbi's update and I'll follow up further down...]
Today’s word is Codeine. It’s wonderful. David had a good night sleep and has been resting pretty much through the day as well. The relief is overwhelming. When this is over I’m going to buy t-shirts for Codeine and Ambien! Never thought I’d be so grateful for these 2 drugs. It’s like the 70’s all over again except its necessary and my hair isn’t so big.
David is a little better in that he’s able to rest without non stop coughing, but he’s absolutely wiped out. The scleroderma is one thing, add a huge dose of chemotherapy and the cold he has and you have zonked. It was a little scary to David to be completely exhausted from just a few steps of walking. We’ve been using the wheelchair because David is so easily out of breath. Nurse Cindy explained to us that this was perfectly normal and expected. She made it clear that he will feel this way and a lot worse before it’s all over. Because we came very prepared and read up on every possibility, none of this is totally unexpected to us. But it’s nice to hear that all is normal.
I took a little ride to Bangor today. I almost continued to Canada but thought better of it. David wanted to hang out in the room and rest and I took advantage that and the gorgeous weather. Bangor is about an hour north of where we are. The ride was beautiful. I was on the look out for a moose. Sadly, I haven’t seen one yet. I did however find an LL Bean outlet and a Borders. That made my day! Warm fuzzy shirts, ½ price calendars and more books to read had me a little giddy.
1 ½ days until our arms are around Jayme! I’m so excited for so many reasons. David needs his Pats, political arguments and History channel buddy! Best medicine!
[Geek Update: The watch is on for the right amount of the stem cells to flowing in my blood. Today's test, compared to yesterdays, will show us if my cells are beginning to flow - or if the old cells are still going down (which has to happen first). All vital signs remain good. I run a 99+ fever on/off thru the day. This is considered OK as long as it is not persistent and reaching 100.]
[Patient Update: I heard from a friend, Marilyn, who also has Scleroderma. She remarked that when saw my picture on the blog - SHE HAD NEVER SEEN ME WITHOUT MY HAT ON!!! I guess I tend to wear it alot. Did anyone else notice this trait of mine?
I slept much better last nite. I'm spending nearly all my time on top of the bed. I get up to take care of things I need, most of time, until nite. I get really drawn out by then.
It is so cool that Robbi found Bangor yesterday. It will keep her sane - and I need her to be so. Nothing cleanses her soul more than shopping, retuning what she bought, and buying some more...
Jayme lands tomorrow - and Robbi has already made sure that path is literally cleared from his condo in New Mexico - to our door. Even Air Force One will be grounded to keep all systems directed to THE priority.
Emily drives up Sunday... (thus the road blocks that limit your travel on Sunday)... and we will be ONE.
It is very good that we are only 3 miles from the hospital and that the parking is 25' from the entrance, Robbi sticks my ass in a wheel chair and we are at the nurses station - all in about 15 minutes. It's like flying thru Providence instead of Boston - the care is just as good (may be better) and the ease/ and service is GREATER!
This is one of those special moments when I am overwhelmed with gratefulness for all of you and what you have enabled me, and my family to do.
Love David]
Signing off for now.
~ Robbi
Read Robbi's update and I'll follow up further down...]
Today’s word is Codeine. It’s wonderful. David had a good night sleep and has been resting pretty much through the day as well. The relief is overwhelming. When this is over I’m going to buy t-shirts for Codeine and Ambien! Never thought I’d be so grateful for these 2 drugs. It’s like the 70’s all over again except its necessary and my hair isn’t so big.
David is a little better in that he’s able to rest without non stop coughing, but he’s absolutely wiped out. The scleroderma is one thing, add a huge dose of chemotherapy and the cold he has and you have zonked. It was a little scary to David to be completely exhausted from just a few steps of walking. We’ve been using the wheelchair because David is so easily out of breath. Nurse Cindy explained to us that this was perfectly normal and expected. She made it clear that he will feel this way and a lot worse before it’s all over. Because we came very prepared and read up on every possibility, none of this is totally unexpected to us. But it’s nice to hear that all is normal.
I took a little ride to Bangor today. I almost continued to Canada but thought better of it. David wanted to hang out in the room and rest and I took advantage that and the gorgeous weather. Bangor is about an hour north of where we are. The ride was beautiful. I was on the look out for a moose. Sadly, I haven’t seen one yet. I did however find an LL Bean outlet and a Borders. That made my day! Warm fuzzy shirts, ½ price calendars and more books to read had me a little giddy.
1 ½ days until our arms are around Jayme! I’m so excited for so many reasons. David needs his Pats, political arguments and History channel buddy! Best medicine!
[Geek Update: The watch is on for the right amount of the stem cells to flowing in my blood. Today's test, compared to yesterdays, will show us if my cells are beginning to flow - or if the old cells are still going down (which has to happen first). All vital signs remain good. I run a 99+ fever on/off thru the day. This is considered OK as long as it is not persistent and reaching 100.]
[Patient Update: I heard from a friend, Marilyn, who also has Scleroderma. She remarked that when saw my picture on the blog - SHE HAD NEVER SEEN ME WITHOUT MY HAT ON!!! I guess I tend to wear it alot. Did anyone else notice this trait of mine?
I slept much better last nite. I'm spending nearly all my time on top of the bed. I get up to take care of things I need, most of time, until nite. I get really drawn out by then.
It is so cool that Robbi found Bangor yesterday. It will keep her sane - and I need her to be so. Nothing cleanses her soul more than shopping, retuning what she bought, and buying some more...
Jayme lands tomorrow - and Robbi has already made sure that path is literally cleared from his condo in New Mexico - to our door. Even Air Force One will be grounded to keep all systems directed to THE priority.
Emily drives up Sunday... (thus the road blocks that limit your travel on Sunday)... and we will be ONE.
It is very good that we are only 3 miles from the hospital and that the parking is 25' from the entrance, Robbi sticks my ass in a wheel chair and we are at the nurses station - all in about 15 minutes. It's like flying thru Providence instead of Boston - the care is just as good (may be better) and the ease/ and service is GREATER!
This is one of those special moments when I am overwhelmed with gratefulness for all of you and what you have enabled me, and my family to do.
Love David]
Signing off for now.
~ Robbi
posted by DesktopDavid at 1:04 PM
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