Tuesday, Tuesday...so good to me...
Feel like I'm inside a tin can...
So happy to be home, but.......the shakes are taking over my entire body...
Shakes and neuropathy are a major influence on my daily agenda..
today: stay home, rest and rest and STOP SHAKNG, PLEASE......
..5FU humming along in my little pouch...
The tremors just keep coming....my legs....my tummy.......ugh..
I made it through seven....
Wednesday, November 24, 2010
Tuesday, November 23, 2010
Monday (11-22-2010)
MONDAY MORNING.......
It's 6AM and David is up, showered and dressed..I look up from our bed with sleepy eyes....
"Best get moving. Today's the day."
I totally forgot..(really, I did)...
Shower, dress, breakfast, and in the car..
Traffic is backed up and dead stopped, but David knows all the side ways to go....
He's good with that......."you have to be in Boston by 8..."
Park the car and upstairs to hook me up...the needle doesn't hurt at all (thank you John)....
Downstairs to see Emily (my nurse practitioner) for the go-ahead...
"you are the best we have".....she says....Others are doing good, (but Gail is doing the best)...
I let them know that it's because of my friends and the prayers and energy they send my way...
I will do this!
Back upstairs for my infusion...
I get a bed...I get the quietest room....
For the first time, I sleep, sleep, sleep....
David sits by my bed, reading his book and watching over me....He calls this my "dormant state" and tells me he is my protector while my defenses are down......
Nurse John keeps my pumps pumping......
sleep
Now it's 8:15 and time to hook me to a port-a-pump and off we go....
dinner......
bed..
sleep
It's 6AM and David is up, showered and dressed..I look up from our bed with sleepy eyes....
"Best get moving. Today's the day."
I totally forgot..(really, I did)...
Shower, dress, breakfast, and in the car..
Traffic is backed up and dead stopped, but David knows all the side ways to go....
He's good with that......."you have to be in Boston by 8..."
Park the car and upstairs to hook me up...the needle doesn't hurt at all (thank you John)....
Downstairs to see Emily (my nurse practitioner) for the go-ahead...
"you are the best we have".....she says....Others are doing good, (but Gail is doing the best)...
I let them know that it's because of my friends and the prayers and energy they send my way...
I will do this!
Back upstairs for my infusion...
I get a bed...I get the quietest room....
For the first time, I sleep, sleep, sleep....
David sits by my bed, reading his book and watching over me....He calls this my "dormant state" and tells me he is my protector while my defenses are down......
Nurse John keeps my pumps pumping......
sleep
Now it's 8:15 and time to hook me to a port-a-pump and off we go....
dinner......
bed..
sleep
Sunday, November 21, 2010
Sunday (11-21-2010)
Sweet Sunday..
Papers, puzzles, funny papers..
My dad would always say, "you're funny enough"...
yes, I am.. :-)
Last night I had a moment where my head came above the surface..
I felt good, really good...I was even able to make a dinner for David and I.
Today....not so good...I feel like flat mush..
..all the color is washed out of the world today...
I try to think happy thoughts....I really do.
David took me to the grocery store with him...couldn't do it..
Oh I tried..walked around with so many moms and their daughters...gathering cans of pumpkin and cranberry sauce....I can feel myself slipping away.....
...I miss my Grace.....
... I miss my life...
I begin to crumble and retreat to sitting in the car with the wieners....
It's the thinking thing again.....I'm lost in a sea of sadness and what if ....and why... and how did this happen...?
.........try so hard to think good things...
Tomorrow I am back to start all over again....
I know I need to be strong....not really a choice...I must be strong...
I'm scared....
Papers, puzzles, funny papers..
My dad would always say, "you're funny enough"...
yes, I am.. :-)
Last night I had a moment where my head came above the surface..
I felt good, really good...I was even able to make a dinner for David and I.
Today....not so good...I feel like flat mush..
..all the color is washed out of the world today...
I try to think happy thoughts....I really do.
David took me to the grocery store with him...couldn't do it..
Oh I tried..walked around with so many moms and their daughters...gathering cans of pumpkin and cranberry sauce....I can feel myself slipping away.....
...I miss my Grace.....
... I miss my life...
I begin to crumble and retreat to sitting in the car with the wieners....
It's the thinking thing again.....I'm lost in a sea of sadness and what if ....and why... and how did this happen...?
.........try so hard to think good things...
Tomorrow I am back to start all over again....
I know I need to be strong....not really a choice...I must be strong...
I'm scared....
Saturday, November 20, 2010
Saturday (11-20-2010)
..oranges..I crave them..
.....cut and suck..cut and suck..I just want to suck the juice out of the segments...it isn't so much orange juice that I want....it's the entire process of biting into the piece and drawing the liquid from it....I am sick with desire...
I can see it in my mind..when I tell David, we head out to stock up on oranges, grapefruit, limes, and a pineapple.
Arriving home....coat is still on..I am slicing oranges in a frenzy..the juice in my mouth is exquisitely satisfying.....cut and suck...cut and suck......I'm actually enjoying consuming something...
I have 48 hours in which to find the strength to start this cycle again...will I be ready?.. can I do this?
..this is not a trick question, but it is a question that must be asked..
...and answered..
.....by me.....
My answer is YES!!!
..never quit...never give up....
..I am committed to enduring whatever it takes to overcome this disease...
...as long as I can stand up....as long as I am breathing.....I will continue to push this aberration..this distortion of life......from my body...
I will be whole again....
.....cut and suck..cut and suck..I just want to suck the juice out of the segments...it isn't so much orange juice that I want....it's the entire process of biting into the piece and drawing the liquid from it....I am sick with desire...
I can see it in my mind..when I tell David, we head out to stock up on oranges, grapefruit, limes, and a pineapple.
Arriving home....coat is still on..I am slicing oranges in a frenzy..the juice in my mouth is exquisitely satisfying.....cut and suck...cut and suck......I'm actually enjoying consuming something...
I have 48 hours in which to find the strength to start this cycle again...will I be ready?.. can I do this?
..this is not a trick question, but it is a question that must be asked..
...and answered..
.....by me.....
My answer is YES!!!
..never quit...never give up....
..I am committed to enduring whatever it takes to overcome this disease...
...as long as I can stand up....as long as I am breathing.....I will continue to push this aberration..this distortion of life......from my body...
I will be whole again....
Friday (11-19-2010)
..this was a lost day..
..the abdominal discomfort is unapproachable with medication...
so cold that I relegated my day and night to the bedroom with space heater and electric blanket..
..we're talking 75 to 80 degrees for fragile comfort...
...hard to come out of myself today..
Monday is coming soon..
..the abdominal discomfort is unapproachable with medication...
so cold that I relegated my day and night to the bedroom with space heater and electric blanket..
..we're talking 75 to 80 degrees for fragile comfort...
...hard to come out of myself today..
Monday is coming soon..
Thursday (11-18-2010)
wow! I don't want to do anything at all. If I try to put my body in motion, my stomach precedes all other movement....booosh....booooosh...bam!
...I sit quite still..
My wieners had baths this morning; soft and sweet ....the two cats are taking it all in with their saucer eyes..thinking about washing the cats, just for fun (the thinking, not the washing)..
..they would be so mad at me..
there was a time when Fall meant the sounds of people raking their yards and kids playing in the leaves... and if you can remember far enough back, the taste of burning leaves in the air as they were burned at curbside...
things change....now the sounds of Fall are dominated by the incessant whine of motorized leaf blowers...
It's really windy today....EEEEEEEEEEEEEEEEEEEEEE..the leaf blowers whine on three sides of my house with the child-men who have discovered a new noisy toy...EEEEEEEEEEEEEEEEEEEEE..they blow the leaves (where are they blowing them?)..the wind blows them all around even as they attempt to dominate nature.....
My yard has soooo many leaves now...
"love thy neighbor".....
...I sit quite still..
My wieners had baths this morning; soft and sweet ....the two cats are taking it all in with their saucer eyes..thinking about washing the cats, just for fun (the thinking, not the washing)..
..they would be so mad at me..
there was a time when Fall meant the sounds of people raking their yards and kids playing in the leaves... and if you can remember far enough back, the taste of burning leaves in the air as they were burned at curbside...
things change....now the sounds of Fall are dominated by the incessant whine of motorized leaf blowers...
It's really windy today....EEEEEEEEEEEEEEEEEEEEEE..the leaf blowers whine on three sides of my house with the child-men who have discovered a new noisy toy...EEEEEEEEEEEEEEEEEEEEE..they blow the leaves (where are they blowing them?)..the wind blows them all around even as they attempt to dominate nature.....
My yard has soooo many leaves now...
"love thy neighbor".....
Thursday, November 18, 2010
Wednesday (11-17-2010)
....very foggy inside...
..most important thing is to be ready for next Monday's infusion..I have four more days to get strong.
I am so detached from everything; something has come undone. The environment is foreign, distant and not recognizable as the same reality that I lived in just six months ago..string theory??
There is the pain...not just nausea and discomfort....
..pain meds help......pills, pills, pills......yuchh..
There is movement inside me....we can actually see my abdomen spasming, churning and scraping...
Not so long ago, the fetus inside me moved and kicked with all the joy that new life promises..
...this would totally be the opposite...
David took me out in the car today to get some air and get away from the house for a bit. We drove around aimlessly for almost two hours. ....through Concord and around, on a cloudy/sunny day..
When we got home, I was glad to be back....to succumb to the incessant fatigue and discomfort in my own space ....my comfort zone......
heal....... please heal...
..most important thing is to be ready for next Monday's infusion..I have four more days to get strong.
I am so detached from everything; something has come undone. The environment is foreign, distant and not recognizable as the same reality that I lived in just six months ago..string theory??
There is the pain...not just nausea and discomfort....
..pain meds help......pills, pills, pills......yuchh..
There is movement inside me....we can actually see my abdomen spasming, churning and scraping...
Not so long ago, the fetus inside me moved and kicked with all the joy that new life promises..
...this would totally be the opposite...
David took me out in the car today to get some air and get away from the house for a bit. We drove around aimlessly for almost two hours. ....through Concord and around, on a cloudy/sunny day..
When we got home, I was glad to be back....to succumb to the incessant fatigue and discomfort in my own space ....my comfort zone......
heal....... please heal...
Subscribe to:
Posts (Atom)