Wow, today is the extra day that we get once every 4 years, what a way to spend the bonus. A very quick update. Only one more bone fry to go, tonight at 4:15, Chemo today and another chemo drug tomorrow and then no more chemo. Dick came by today after getting his first shot to bump up his stem cells, he will continue during the weekend and then donate on Tuesday. On Wednesday we celebrate Moms new birthday, so remember from now on presents on January 19th and more bigger presents on March 5th.
Actually she is thinking March 5th should be a Tiffany type day, she loves the little blue boxes.
She is holding up well except for the nausea and the upchucking. She went to the gym this morning and worked out for about a half hour with the Physical Therapist. We are all looking forward to Wednesday and our new beginning.
Friday, February 29, 2008
Wednesday, February 27, 2008
GOT HOPE
After a day of tests and more tests and a wonderful gourmet meal shared by Greg, Stephanie, and Eric at Tommy's we reluctantly checked in to our Penthouse Suite at about 6:00 PM on Monday. After getting Mom unpacked and settled in she got her first round of Chemo and then a pretty good nights rest. Tuesday she was up bright and early and got her first round of radiation at 8:00 AM. Back in her room around 9:30, we spent the day reading our new book for the Gre-Sha Book Club, "Little Heathens." Mom reports that the food is really a step up from Eisenhower and can't wait for her next meal. She went down for her second round of radiation at 4:00 PM and back at 6:00 PM. She reports that she is feeling a lot of aches and pain, kinda like general flu symptoms, and a headache. So far these are the only side effects, YEAH! Chemo again last night at 10:00, Not Good, we're working on getting it earlier so we don't lose sleep. Back to radiation at 8:00 this morning and so it goes. 3 radiations down and 5 to go; 2 Chemo down and 3 to go. Her room number is 6227.
Yes we do
Our new Quote to live by from Albert Camus; "In the depth of winter I finally learned that there was in me an invincible summer."
Mom in her new digs
Saturday, February 23, 2008
SHOW-TIME!!!
The preparation is over, All players are ready, and the schedule is set. Opening day is Monday February 25, 2008. The first day of the REST OF OUR LIVES! On that day we begin our Allogeneic Hematopoietic Progenitor Cell Transplant. (Pretty impressive title I'd say) So you can all follow along our schedule will be as follows:
Monday 2/25/08 -9 Admit to BMT; Fludarabine (Chemo Drug)
Tuesday 2/26/08 -8 Fludarabine; Helical Tomotherapy (HT)x2 this is radiation
Wednesday 2/27/08 -7 Fludarabine; HTx2
Thursday 2/28/08 -6 Fludarabine; HTx2
Friday 2/29/08 -5 Fludarabine; HTx2
Saturday 3/01/08 -4 Melphalan (Another Chemo Drug)
Sunday 3/02/08 -3 Tacrolimus and Sirolimus (immunesuppressents)
Monday 3/03/08 -2 Tacrolimus and Sirolimus
Tuesday 3/04/08 -1
Wednesday 3/05/08 0 Infuse PB Stem Cells from donor
After that it will depend on how Sharon gets along, the earliest we could be released from the hospital would be around 21 days following transplant. We would then be required to be near-by in case any Graft vs Host disease should show up. At some point we will be allowed back to our home, but for 100 days post transplant we will be at the City of Hope 2 days a week for testing and monitoring.
We are looking forward to this adventure with faith. We invite all of you to include Sharon in your Fast on Sunday March 2nd.
We will continue to keep you posted as we go along.
Monday, February 18, 2008
Mummy Photo Album
Mom Standing by Cement Bed holding Mask
Getting Comfy before Scan
A closer View
Where's the Puck
Getting Comfy before Scan
A closer View
Where's the Puck
Saturday, February 16, 2008
Mummy alive
You see the mummy's of ancient Egypt and you say, "Cool anything is possible when you are dead!" BUT how about being a mummy while you are alive? Let me tell you how it is.
You all know what a cat scan doughnut looks like . . . and the table you lie on that moves you in and out? So there I am in front of the machine and it has a blue bag on it that looks like a deflated air mattress. OK this is going to be comfortable . . . wrong! You lie down and then it is filled with something akin to quick-set cement. It blows up and when every nook and cranny is filled in from above your shoulders to beneath your feet (arms straight and close at your side, legs close together) the three techs push it as tight as they can get it and then the "cement" hardens. Nothing can move not even a hair.
Then just when you think, OK, I still have my head they bring this heavy mesh connected to a very large horse shoe and say, "Pretend this is a spa treatment. It's warm and will cover your entire face and neck". Then they stretch this over your face and lock the horse shoe to the table.
Your body streams, I can't breath, but your mind yells = don't be crazy, just relax. THEN comes the cold towels. They are placed over the mesh so it too will harden like cement. After that takes way tooooo long they trace your eyes and mouth and un-clamp the horse shoe. Oh, air how sweet and moving your head, how wonderful.
After they put tape around the three opening to make the rough cuts not so rough (ha!) back goes the clamping of the mask and now you are moving into the machine.
The only way to survive is to take your mind to any happy place you can find and stay there. I was like that for about an hour and the REAL treatment will be an 11/2 hours twice a day.
WHY - you ask? AND how is it you have never heard of this before? If all goes well I will be part of a year old trial for the radiation part of my therapy. This machine is the only one in the world and the reason you cannot move at all is that the laser beams target only your bones instead of your whole body. This protects your vital body organs which is the problem with the total body radiation. There are 15 people in the trial so far and I will be #16. I will be the oldest as the oldest before me was 61 but they all feel that I am a very young 62 year old. Yea for exercise and never smoking etc. Three have not made it so the average is the same 20% as with the high dose chemo. I will be doing both. The radiation is an added help in keeping the leukemia from not returning. I have one more test that will help us decide if it is worth the risk and that will be a CT scan next Friday.
If we go for radiation I will check in on Sunday the 24th, if chemo only, then Monday the 25th.
It's amazing what you can make yourself do when your life is at stake . . . don't try this at home just take my word for it!
The blasts in the marrow are somewhere between 6 and 4%. We will find out exactly on Monday when we go back for more Mummy time. Please keep sending up those prayers.
You all know what a cat scan doughnut looks like . . . and the table you lie on that moves you in and out? So there I am in front of the machine and it has a blue bag on it that looks like a deflated air mattress. OK this is going to be comfortable . . . wrong! You lie down and then it is filled with something akin to quick-set cement. It blows up and when every nook and cranny is filled in from above your shoulders to beneath your feet (arms straight and close at your side, legs close together) the three techs push it as tight as they can get it and then the "cement" hardens. Nothing can move not even a hair.
Then just when you think, OK, I still have my head they bring this heavy mesh connected to a very large horse shoe and say, "Pretend this is a spa treatment. It's warm and will cover your entire face and neck". Then they stretch this over your face and lock the horse shoe to the table.
Your body streams, I can't breath, but your mind yells = don't be crazy, just relax. THEN comes the cold towels. They are placed over the mesh so it too will harden like cement. After that takes way tooooo long they trace your eyes and mouth and un-clamp the horse shoe. Oh, air how sweet and moving your head, how wonderful.
After they put tape around the three opening to make the rough cuts not so rough (ha!) back goes the clamping of the mask and now you are moving into the machine.
The only way to survive is to take your mind to any happy place you can find and stay there. I was like that for about an hour and the REAL treatment will be an 11/2 hours twice a day.
WHY - you ask? AND how is it you have never heard of this before? If all goes well I will be part of a year old trial for the radiation part of my therapy. This machine is the only one in the world and the reason you cannot move at all is that the laser beams target only your bones instead of your whole body. This protects your vital body organs which is the problem with the total body radiation. There are 15 people in the trial so far and I will be #16. I will be the oldest as the oldest before me was 61 but they all feel that I am a very young 62 year old. Yea for exercise and never smoking etc. Three have not made it so the average is the same 20% as with the high dose chemo. I will be doing both. The radiation is an added help in keeping the leukemia from not returning. I have one more test that will help us decide if it is worth the risk and that will be a CT scan next Friday.
If we go for radiation I will check in on Sunday the 24th, if chemo only, then Monday the 25th.
It's amazing what you can make yourself do when your life is at stake . . . don't try this at home just take my word for it!
The blasts in the marrow are somewhere between 6 and 4%. We will find out exactly on Monday when we go back for more Mummy time. Please keep sending up those prayers.
Thursday, February 14, 2008
Friday, February 8, 2008
Oh somebody's had a birthday!
Our dear little baldy here.
Kind Father in Heaven bless her
Throughout the coming year!
For those of you who don't know, this is the song we sing on birthdays in order to weed out potential intruders, embarass visitors and remind new in-laws that they aren't part of the family just yet. This is how it works: we all gather around and announce that it's time to sing "Happy Birthday". A family member brings out a big cake (or if Dad was in charge of dessert, about 10 different kinds of pie) and carries it over to the lucky birthday guy or gal surrounded by a mountain of presents. Someone gives the resting tone and then, as any normal person would do, the visitor or new family member dives with confidence head first into the good ole traditional birthday jingle. After all, they know this song. This is their chance to shine. Their opportunity to show that they belong. They only get about half way into the word "birthday", however, before they stop cold and realize with horror they are singing the wrong song. Meanwhile, we are all singing the little preface above in perfect pitch and unity. The new person than goes and hides red faced in the corner while we point and laugh with mouths full of pie. It's a beautiful thing.
Unfortunately, this year for mom's birthday, we didn't have any newcomers. We did, however, have lots o picture taking. Here's a little slideshow of some of my favorites from the evening.
Kind Father in Heaven bless her
Throughout the coming year!
For those of you who don't know, this is the song we sing on birthdays in order to weed out potential intruders, embarass visitors and remind new in-laws that they aren't part of the family just yet. This is how it works: we all gather around and announce that it's time to sing "Happy Birthday". A family member brings out a big cake (or if Dad was in charge of dessert, about 10 different kinds of pie) and carries it over to the lucky birthday guy or gal surrounded by a mountain of presents. Someone gives the resting tone and then, as any normal person would do, the visitor or new family member dives with confidence head first into the good ole traditional birthday jingle. After all, they know this song. This is their chance to shine. Their opportunity to show that they belong. They only get about half way into the word "birthday", however, before they stop cold and realize with horror they are singing the wrong song. Meanwhile, we are all singing the little preface above in perfect pitch and unity. The new person than goes and hides red faced in the corner while we point and laugh with mouths full of pie. It's a beautiful thing.
Unfortunately, this year for mom's birthday, we didn't have any newcomers. We did, however, have lots o picture taking. Here's a little slideshow of some of my favorites from the evening.
Reunited and it feels so good...
Mac is back! No, not John McCain, though unfortunately he is too. My computer! Hooray! Actually, it's been back for a week, but I'm just now starting to get back into the swing of things. It took me awhile to get out of the fetal position on the floor of the bathroom where I've been rocking back and forth since my baby was hauled away to the Mac store for repairs. I know you probably haven't missed me, but boy oh boy, have I missed you! And since my wee one is currently sleeping (thank you Dr. Weisbluth! I'm naming my next born after you), I thought I'd spend a little time with the Domes.
You're probably wondering what I've been doing with the piles and piles of spare time I must have had since I wasn't posting. Actually, you probably could care less. Which is good, becasue I have no idea what I've done with all that time. I vaguely remember cleaning dog puke off our 500 thread count sheets and laping Disneyland 57 times in a stroller trying to coax Axel to sleep (totally uneffective, by the way). But other than that I've just been missing the blog and watching way more political coverage than any human should be subjected to. But now that Mitt's out of the race, look forward to a little blog make-over and a lot more posts! Maybe some of them will even have something to do with mom.
Tuesday, February 5, 2008
The Invitation's in the Mail?
Yea, right!!! Everyone's talkin' about ya but all ya can do is comment? Finally I got the invitation so here I go. I was reading the WSJ this morning and found I couldn't breath . . . like I'd just climbed the bump and grind. Soooo I had to play the vampire for four hours and get a couple of doses of blood (seems the red blood guys carry the oxygen, Oh yea I do remember that) and so now all is well. It's a much better experience having blood outside the hospital rather than in, which brings me to the count down = I'm on day 13. Yes, 13 more days in this home and in my bed and with home food. So, I'm really trying to fill each day with all the movies and games Ricky will play and watch with me since going out is still on the "do not do" list.
About Dick, I talked to him at the end of all his tests and he said he thought all things were a go and I haven't heard anyting else from the hospital so the countdown stands. I love you all and so appreciate all your prayers. I'm sure that is why my melt down on day 18 only lasted a couple of hours and then back came the peace and reasurance and courage that only comes from heaven through all the petitions. Thank you is so plain and simple but I do thank you.
About Dick, I talked to him at the end of all his tests and he said he thought all things were a go and I haven't heard anyting else from the hospital so the countdown stands. I love you all and so appreciate all your prayers. I'm sure that is why my melt down on day 18 only lasted a couple of hours and then back came the peace and reasurance and courage that only comes from heaven through all the petitions. Thank you is so plain and simple but I do thank you.
Saturday, February 2, 2008
Just Curious?
It's been quiet around here and I was just curious as to how Uncle Dick's appointment went Tuesday and also how effective the round of chemo went 2 weeks ago---are your blast below 5% or do you know yet? We're really hoping/praying for those blasts! Not hearing anything is making me worry a bit. I'm sure there is nothing to report yet and that's why it's quiet.
Thanks, Lou
Thanks, Lou
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