The snow/ice/ice/did I mention ice? is still here. We are all waiting for more snow and then back to rain. i find that I am not very productive these last couple of days. I think a deep river of anxiety is running below the surface and I am stuck just waiting to see what will happen next.
We are so close to the end. So close but it feels like The Terminator, he is never really dead. I should not think like this but it is just part of this process. Okay, I will quit whining and feed the dogs and start dinner and clean up the clutter and watch and wait for the snow.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
Wednesday, November 29, 2006
Tuesday, November 28, 2006
Sunday, November 26, 2006
Snow and other Quandrys
Snow is predicted and a few bits and pieces are falling. I am always amazed at how we react to snow and warning of snow. I was raised in a part of the world that snow was common. I was M-E's age and driving in the snow in a large full sized station wagon. I never had a wreck. I did slide off the road a couple of times but then there were people around that knew how to get us back on the road. They use the word snow here and everyone hunkers down for the long winter.
We have been hunkered down for a long time. The enormity of the length of our siege is catching up with me. I don't know how long it is going to take for us to not feel like every little snow flake is a return to the blizzard. Dr. Tracy told me that we would not experience a little flurry, we would have a full fledged Norw ester on steroids. So for now we will just work on enjoying a few flakes and settle in for what ever is in store for us down the road.
We have been hunkered down for a long time. The enormity of the length of our siege is catching up with me. I don't know how long it is going to take for us to not feel like every little snow flake is a return to the blizzard. Dr. Tracy told me that we would not experience a little flurry, we would have a full fledged Norw ester on steroids. So for now we will just work on enjoying a few flakes and settle in for what ever is in store for us down the road.
Friday, November 24, 2006
The dish washer is running
I have lost count of how many loads but it is well worth it. I can not count the number of turkey left overs we have had. Sandwiches seem to be the best.
We had a great time. Good food, good friends, good conversation. It was lots of fun. Thanksgiving came a perfect time for M-E since she had just completed her last dose of Prednisone. Hard to believe this was the last dose. 18 months of monthly doses. They say time does fly and if it can fly while doing leukemia treatment, then time must be very elusive.
Well time to unload the dishwasher. Happy Thanksgiving everyone. Oh, Grandma Foster would have been proud.
Thursday, November 23, 2006
Waitin For Puff Pastery and other unknowns
Turkey day. Full of unknowns. Will the turkey be juicy? Will the stuffing be good? Will the pie be as good as I remember it was last year? Will the........
We have added a new wrinkle. I have thawed, rolled, pierced and puff pastry. It is about to bake, as soon as the oven reaches 400 degrees. I am not sure what puff pastry is or if it works or how it works but I have a recipe for an asparagus and cheese tart and I am going for it. I will be adding sauteed leeks and red and yellow peppers because that seems to be what needs to be done. Oh well, Puff Pasty = our Life.
We know that M-E still sounds like she smoking 4 packs a day. Tbe great news is that her bone marrow is happy bone marrow. We all hoped her leukemia was gone, now we know it it.
New ThanksGiving Prayer:
May the puff pastry work and leukemia stay away!
We have added a new wrinkle. I have thawed, rolled, pierced and puff pastry. It is about to bake, as soon as the oven reaches 400 degrees. I am not sure what puff pastry is or if it works or how it works but I have a recipe for an asparagus and cheese tart and I am going for it. I will be adding sauteed leeks and red and yellow peppers because that seems to be what needs to be done. Oh well, Puff Pasty = our Life.
We know that M-E still sounds like she smoking 4 packs a day. Tbe great news is that her bone marrow is happy bone marrow. We all hoped her leukemia was gone, now we know it it.
New ThanksGiving Prayer:
May the puff pastry work and leukemia stay away!
Friday, November 17, 2006
Endings
December 7, 2006. It will be a very fabulous day. It will be the end of so much in some ways but I wonder if it will be the end. June 17, 2004 to December 7 2006. Lots of days, lots of worry, lots of blessings, lots of tears, lots of prayers, lots and lots and lots. I feel like I am no more ready for the end than I was at the beginning.
\
The difference is that at least we had some connection to lots of people and professionals and studies and once we found our path, we had a "Road Map".
What lays ahead is not so well defined. How do we react 0ut of the pressure cooker? Do we get the bends? When divers get the bends they put them back in the pressure cooker ( hypobaric chamber). What happens when we don't have a team and a charge nurse and a social worker.and the........ Do I remember what life was like before leukemia came in and trounced on our lives and tried to get the best of us. Do I want to return to that life? If I don't have all the pressure will I try to create it so that I will feel comfortable? I think this ending is more complicated I had first been able to consider.
Each ending brings new beginnings. I guess we will be exploring that for a while.
\
The difference is that at least we had some connection to lots of people and professionals and studies and once we found our path, we had a "Road Map".
What lays ahead is not so well defined. How do we react 0ut of the pressure cooker? Do we get the bends? When divers get the bends they put them back in the pressure cooker ( hypobaric chamber). What happens when we don't have a team and a charge nurse and a social worker.and the........ Do I remember what life was like before leukemia came in and trounced on our lives and tried to get the best of us. Do I want to return to that life? If I don't have all the pressure will I try to create it so that I will feel comfortable? I think this ending is more complicated I had first been able to consider.
Each ending brings new beginnings. I guess we will be exploring that for a while.
Thursday, November 16, 2006
Letter to Mary-Elizabeth
Over the years I have written letters to Mary-Elizabeth to be read at some point in the future. While they are hit and miss, I generally send them on her birthday and mine. Here is the one I did this year. Since she does not read the blog, I figure it is safely tucked into the envelope with the special stamp and the fun sparkels inside.
Dear Mary-Elizabeth;
53 years ago I entered this world and changed the lives of Grandma and Grampa. 14 years ago you changed my life. These were huge changes but they were wonderful changes. Never would I go back to those days of being childless. Children only make your life full of MORE
More love
More laughter
More work
More joy
More sorrow and worry
More contentment
More pride
More worry
More smiles
More messes in the kitchen
More Wonder at the important things
More chances to read great books like Good Night Moon
More kittens and puppies
More Christmas Lights
More Fancy Dinners
More Valentines
More "I love yous"
More excuses to be silly
More chances to look at the stars and moons
More chances to tell stories
More times to play CandyLand
More times to watch the ballet recitals
More chances to find cloud animals
More chances to go see the Nutcracker
More chances to eat Cotton Candy
More worry but it is worth every moment
I might be 53 but I am MORE because of you.
Dear Mary-Elizabeth;
53 years ago I entered this world and changed the lives of Grandma and Grampa. 14 years ago you changed my life. These were huge changes but they were wonderful changes. Never would I go back to those days of being childless. Children only make your life full of MORE
More love
More laughter
More work
More joy
More sorrow and worry
More contentment
More pride
More worry
More smiles
More messes in the kitchen
More Wonder at the important things
More chances to read great books like Good Night Moon
More kittens and puppies
More Christmas Lights
More Fancy Dinners
More Valentines
More "I love yous"
More excuses to be silly
More chances to look at the stars and moons
More chances to tell stories
More times to play CandyLand
More times to watch the ballet recitals
More chances to find cloud animals
More chances to go see the Nutcracker
More chances to eat Cotton Candy
More worry but it is worth every moment
I might be 53 but I am MORE because of you.
Sunday, November 12, 2006
Message from Elise.
Great friends.
We have had a very quiet day. I took Lorraine to the airport, went grocery shopping and went back to bed. I just could not get out of bed. I slept for 6 hours with the dogs. It has been a long time since I have done that. I thought I would feel like I was never going back to bed but I can not wait to return. I guess I was tired. It has been a lot time since I felt I could just collapse like that. Now the dogs are running around like crazy. Tucker is carrying around his 2 lb hand weight. Go figure. He loves it until it drops on his paw.
Below is a message from Elise. I love these children with cancer. They are in the middle of cancer treatment and they are able to look outside themselves and see others in need.
Elise is scheduled to receive a transplant next week. She is at the beginning of a long wait. Once she has her transplant they will be in the hospital for about a month and the first 100 days are very important to see if the transplant takes.
I guess the moral of the story is that all of us need prayer and respite from our lives. That is why we have each other.
- ELise here Hey guys I know a getting lotsa prayers 'cause they are working, slowly but surely.Well at first I was nervous about radition becasue you hhave to stand VERY still for 3 minutes per beam or 9 minutes on the front, nine on back and as most of you know that could be VERY diffucult!:) but it wasn't horrible 'cause I brought some music. now I can do 9 minutes without taking a break!!!!! It doesn't hurt at all, the only thing is a loud buzzing noise. BBBBBUUUUUZZZZZZ anyway my next (and last, yipieee) treatment of radiation is a 2 today. Also I was wondering if you could pray for my friend Fanny, she has AML amd is not doing well. She is haveing trouble breathing if her (bp) blood pressure drops at all she will be moved to the ICU(intensive care unit). I really would appreatiate it if you prayed for Fanny so she can run and laugh and hang out with friends. She is an amazing 10 yr old and heeps my spirits up when I 'm sad!!! Please pray for Fanny! B4N (bye for now) EC
Friday, November 10, 2006
Half Way Through Radiation.( Someone else and not M-E)
Pale, washed out, tired colors. I guess I chose this shade because of my thoughts tonight. Elise R. is 50% through with her total body radiation(TBR). She is 11 and for 9 minutes, she must stand by herself in a room with a huge door closed to receive high dose radiation. She has handle bars to steady herself and something to lean against. It is not a fun experience. Each dose makes her more tired. Two times a day. She has had 4 doses. Compared to Mary-Elizabeth, Elise is being run over by a freight train twice a day.
This is the part that is so hard. There is nothing that anyone can do to make it go away. Then only thing that can be done is to try and make it easier. So my plan for the day is to think some extra thoughts about good things. Light a few candles and say extra prayers about everything.
I think I have had a constant conversation going in my head for a while now. I am still in child mode. Part of me thinks I need to let God know what would work for me. My Santa list. World peace, health for M-E. Less Rain, More Rain. More time in the day, more sleep, quiet dogs, good neighbors, cooperative clients, you get the picture. I have learned over the last couple of years more productive conversations revolve around understanding and wisdom and acceptance. Maybe the real discussion should revolve around trust. Trust in good results, trust in acceptance of bad results. Trust that what ever happens will be handled.
I have candles lit but I think I have to make my own coffee, It could be worse, there could be no coffee..
This is the part that is so hard. There is nothing that anyone can do to make it go away. Then only thing that can be done is to try and make it easier. So my plan for the day is to think some extra thoughts about good things. Light a few candles and say extra prayers about everything.
I think I have had a constant conversation going in my head for a while now. I am still in child mode. Part of me thinks I need to let God know what would work for me. My Santa list. World peace, health for M-E. Less Rain, More Rain. More time in the day, more sleep, quiet dogs, good neighbors, cooperative clients, you get the picture. I have learned over the last couple of years more productive conversations revolve around understanding and wisdom and acceptance. Maybe the real discussion should revolve around trust. Trust in good results, trust in acceptance of bad results. Trust that what ever happens will be handled.
I have candles lit but I think I have to make my own coffee, It could be worse, there could be no coffee..
Tuesday, November 07, 2006
Waiting for Godot
When I was in college I went to see Waiting for Godot. I remember the play and even where we sat. The endless waiting and talk about waiting and the hope that the waiting was about to be over, the talk about the waiting being over. I think ALL parents are in the play: we just don't know it.
We are lucky enough to have more to our life than just sitting and waiting so we are busy while we wait but we are endlessly waiting. We wait for test results, we wait for doctors, we wait for counts, we wait for the next round to start, we wait for the good news while preparing for the bad news. We wait and wait and ............
I have come to realize that there is a gift in the waiting. Waiting gives us a moment to stop and reflect and to pause. A moment to catch our breath, connect with others and to prepare for the rest of the journey.
I was always ready to rush through treatment, get to the other side, to JUST get it over with. I figured that the sooner we were done, the sooner we could get on with our 'REAL LIVES'. It took me a long time to realize that this, at this moment, at this second, at this next medical challenge, was our real life. It was full of challenges and heartache and pain as I watched my daughter silently take the next dose and the next indignity. It was the time in the waiting room when I could chat with a confused and scared new mom and let her know that it would be all right. It was the hours in the ER when I realized that we were lucky to have ALL and not some really scary thing like a child with a drug addiction. Once I settled in and realized that this was our real life, it was better. Not great, but better.
What has really helped is know that no matter how long it took, or how long we had to wait, there were people along our path to join in the vigil.
.
We are lucky enough to have more to our life than just sitting and waiting so we are busy while we wait but we are endlessly waiting. We wait for test results, we wait for doctors, we wait for counts, we wait for the next round to start, we wait for the good news while preparing for the bad news. We wait and wait and ............
I have come to realize that there is a gift in the waiting. Waiting gives us a moment to stop and reflect and to pause. A moment to catch our breath, connect with others and to prepare for the rest of the journey.
I was always ready to rush through treatment, get to the other side, to JUST get it over with. I figured that the sooner we were done, the sooner we could get on with our 'REAL LIVES'. It took me a long time to realize that this, at this moment, at this second, at this next medical challenge, was our real life. It was full of challenges and heartache and pain as I watched my daughter silently take the next dose and the next indignity. It was the time in the waiting room when I could chat with a confused and scared new mom and let her know that it would be all right. It was the hours in the ER when I realized that we were lucky to have ALL and not some really scary thing like a child with a drug addiction. Once I settled in and realized that this was our real life, it was better. Not great, but better.
What has really helped is know that no matter how long it took, or how long we had to wait, there were people along our path to join in the vigil.
We are waiting for the end of M-E's treatment. We are waiting for the beginning of Elise's transplant. We are waiting for ..................... Thanks for joining our journey.
.
Saturday, November 04, 2006
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