I should know that by now. Time has been good and bad to us. We all know it keeps ticking and ticking. We have zoomed through 2013. I am so glad. 13 is not my favorite number. But we have made it to 2014. It should be a much better year.
We are so lucky to be here. Give back time has arrived for me. I have items for the survival kits. Trader Joes bag for laundry, going for showers, a million uses. A good mug for tea or coffee. Tea and coffee. A Starbucks gift card for coffee and food that is necessary to survive the bad bad food at the hospital. A chakra wind chime to calm the pumps on the pole. A shaker full of Cinnamon Sugar. A letter with some secret information.
Tomorrow we will give them to someone that knows who needs them.
This is a start. A small but I think good start. We shall see if the reception is what I hope it to be.
A start. It might take some time. But then all things take time.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
Wednesday, January 01, 2014
Saturday, December 28, 2013
So Time to Do Something
So as I sit here, three new families are waking up, the kids are sleeping and the parents are waiting for the blood draw results. They are drawn ever day 4 times a day and it becomes an obsession. How much have they fallen?What next? What problems do the rest of the numbers show? How long will this takes?What are the next steps? How do we survive the week-end? How is it different? A million questions, they feel like they are in a tornado and there is not end in sight of a landing zone.
Okay so what can I do. I am looking for one more item for the "bag". It can be used to take stuff to the parent shower room, or for transporting stuff to and from the car. It can be used at the grocery store because there will be lots of trips to make there. Then there is a china cup for tea, some cinnamon sugar for the all important toast, a Starbucks Card to start racking up the free rewards and some other little things. A note, a list to put on what ever website they are using about what they need to have other's do.
I needed the list more than anything, and the china cup. So many want to do something and when this happens you are in such a state it is not possible to say what you need of people.
I will drop it all off after church tomorrow.
Meb is with her Sierra Family. All is good.
Okay so what can I do. I am looking for one more item for the "bag". It can be used to take stuff to the parent shower room, or for transporting stuff to and from the car. It can be used at the grocery store because there will be lots of trips to make there. Then there is a china cup for tea, some cinnamon sugar for the all important toast, a Starbucks Card to start racking up the free rewards and some other little things. A note, a list to put on what ever website they are using about what they need to have other's do.
I needed the list more than anything, and the china cup. So many want to do something and when this happens you are in such a state it is not possible to say what you need of people.
I will drop it all off after church tomorrow.
Meb is with her Sierra Family. All is good.
Thursday, December 26, 2013
Three New Diagnosis
We had a great time at Christmas Eve Dinner. Good Friends, great food. Fun candles to burn. Great Evening.
Three families at Seattle Children's did not. Two new ALL, one relapse. Damn it. Cancer comes flying out of the sky and lands in people's lives. You would think Cancer could wait until after Christmas.
The most frustrating thing is I don't know what to do for them. Then I think about what would have helped me. Would one more person telling me things help me in any real way. Would have helped to meet a person like me right out of the gate? Am a bad person for a new diagnosis to know given ME traveled so far from Leukemia and then had a hard re-entry? I am so so confused.
So I think I will do this. When I am over at the hospital I will put together some essentials. Cinnamon sugar, Cheerios, and a wind chime for the pole. A list of things people need to ask for when all the people in their lives ask the what they can do... The essentials. I will drop them off and leave a note.
I never really understood who Rick Boyle could become our fairy the first time. He had lost a child and was there for us. He was the cheer leader and gathered the troops. I now understand what it is like to want to give back in a way that will help someone after so so many helped us.
We can never ever repay those that helped us but we can pass it on....
Here is to passing it on.
Three families at Seattle Children's did not. Two new ALL, one relapse. Damn it. Cancer comes flying out of the sky and lands in people's lives. You would think Cancer could wait until after Christmas.
The most frustrating thing is I don't know what to do for them. Then I think about what would have helped me. Would one more person telling me things help me in any real way. Would have helped to meet a person like me right out of the gate? Am a bad person for a new diagnosis to know given ME traveled so far from Leukemia and then had a hard re-entry? I am so so confused.
So I think I will do this. When I am over at the hospital I will put together some essentials. Cinnamon sugar, Cheerios, and a wind chime for the pole. A list of things people need to ask for when all the people in their lives ask the what they can do... The essentials. I will drop them off and leave a note.
I never really understood who Rick Boyle could become our fairy the first time. He had lost a child and was there for us. He was the cheer leader and gathered the troops. I now understand what it is like to want to give back in a way that will help someone after so so many helped us.
We can never ever repay those that helped us but we can pass it on....
Here is to passing it on.
Tuesday, December 24, 2013
Christmas Eve Morning
4 crabs are dead, dismembered and ready to be made into soup.
ME has made lots of stuff that will be baked or is already done. Peanut Butter balls are the best so far.
The house is just needing some stuff to be stashed.
MEb's emergency passport will be ready to pick up on Thursday. We will probably get it on Monday.
It is good.
ME has made lots of stuff that will be baked or is already done. Peanut Butter balls are the best so far.
The house is just needing some stuff to be stashed.
MEb's emergency passport will be ready to pick up on Thursday. We will probably get it on Monday.
It is good.
Friday, December 20, 2013
Snowy Morning...
My neighbors are all sleeping. Quiet. No movement, one car has destroyed the view out my window. One dog has walked by as reported by my dogs. Sort of nice. Snowy morning will soon give way to crazy day but for a few minutes, we can sit here with our snowy morning.
It is slowing me down today. For an hour or so. I needed that to happen for a few minutes. Even as I sit here the list in my head begins to form. But for a moment it is only about the pretty lights, the quiet street and the moment of focus on silence.
Now I have to clean off the hummingbird feeder for they will shake themselves out of their semi dormant state and need some sugar water to make it through the day.
Meb comes home this afternoon.
It is slowing me down today. For an hour or so. I needed that to happen for a few minutes. Even as I sit here the list in my head begins to form. But for a moment it is only about the pretty lights, the quiet street and the moment of focus on silence.
Now I have to clean off the hummingbird feeder for they will shake themselves out of their semi dormant state and need some sugar water to make it through the day.
Meb comes home this afternoon.
Do you think it is rude if you are clearing the snow off the hummingbird feeder and get buzzed!!!!!
Wednesday, December 18, 2013
I spent yesterday at a job interview
A marathon therapy session. I spoke with 7 or 8 attorneys that all asked me same questions in different ways. It was sort of cathartic and interesting at the same time.
I told one of them that work was not my main source of "fulfillment". I think that was a fair statement. I told him it could be a part of it but I was a very busy person outside of work.
I was never a lawyer, just like Dad was never a doctor. I have put together a life that is fulfilling in other ways. Family, friends, fellow Cancer World peeps, my exchange students, my neighbors.. You get the picture.
I will find a job, the right job. I will do great and memorable things at the job. I will add value to the organization that takes a chance on hiring me with my certain weird bucket of skills.
Life is an adventure and each time a new door opens I thank my parents for giving me the sense of adventure and courage to walk through the door.
I told one of them that work was not my main source of "fulfillment". I think that was a fair statement. I told him it could be a part of it but I was a very busy person outside of work.
I was never a lawyer, just like Dad was never a doctor. I have put together a life that is fulfilling in other ways. Family, friends, fellow Cancer World peeps, my exchange students, my neighbors.. You get the picture.
I will find a job, the right job. I will do great and memorable things at the job. I will add value to the organization that takes a chance on hiring me with my certain weird bucket of skills.
Life is an adventure and each time a new door opens I thank my parents for giving me the sense of adventure and courage to walk through the door.
Tuesday, December 17, 2013
Backing away from the hard subjects....
I am such a domesticated fowl that lays eggs for its people.
Oh well, I too have limits to what I can stand. So Christmas Update. House is trashed, but Christmas is mostly here. I have not put up the Georg Jensen yet. I will probably do so tomorrow. It is sort of Mary-E's job because her OCD requires they be hung perfectly. I am sort of a "get them up' kind of person.
Christmas cards are in the mail, to me. I will get them in the mail to everyone as soon as I can. Addresses mostly done. Stamps purchased and in hand. Dinner planned. Presents procured, such as they are. Tacky Christmas candles line the mantle. We are going to have a very pyromaniac Christmas Eve.
It is all good. Actually it is all great. For Us anyway. Good counts. Good grades. Job hunt is progressing. Interesting opportunities are being revealed. Stuff I never thought about doing. Mom is great in so many ways. She is too busy to talk to anyone. David is flying lots, Belle is doing what ever Belle does. Alex, from what I hear he is doing okay. Not many complaints.
Well the sky is lighter but the Christmas timer does not think it is dawn yet (7:44 am).
One thing I have learned, it will all reveal itself in time. When that time will be is always the question.
Oh well, I too have limits to what I can stand. So Christmas Update. House is trashed, but Christmas is mostly here. I have not put up the Georg Jensen yet. I will probably do so tomorrow. It is sort of Mary-E's job because her OCD requires they be hung perfectly. I am sort of a "get them up' kind of person.
Christmas cards are in the mail, to me. I will get them in the mail to everyone as soon as I can. Addresses mostly done. Stamps purchased and in hand. Dinner planned. Presents procured, such as they are. Tacky Christmas candles line the mantle. We are going to have a very pyromaniac Christmas Eve.
It is all good. Actually it is all great. For Us anyway. Good counts. Good grades. Job hunt is progressing. Interesting opportunities are being revealed. Stuff I never thought about doing. Mom is great in so many ways. She is too busy to talk to anyone. David is flying lots, Belle is doing what ever Belle does. Alex, from what I hear he is doing okay. Not many complaints.
Well the sky is lighter but the Christmas timer does not think it is dawn yet (7:44 am).
One thing I have learned, it will all reveal itself in time. When that time will be is always the question.
Monday, December 16, 2013
Euthanizing Children
Euthanizing Children
I could not type those words yesterday. How do you type those words. While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die. I never even thought about it.
So let me process this. So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs. They are able to ask to die and I have to agree.
Can a three year old ask? I know a pretty smart three year old, Alistaire. She has had cancer twice in two years. She just wants to be a big girl. She asked her mom if she was going to be a big girl. Does she even understand the word "dead". Even if she asked would anyone be able to "agree". She just wants me to upgrade my phone games. Alistaire does not care about the License Plant Game.
Mary-Elizabeth is now an adult in the eyes of the law. (She has been an adult much longer than that. ) More than once during the process she wanted me to make it all stop. There were lots and lots of time that the pain was beyond what could be given to her safely. Not just once but more than once. Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain."
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal. I was very very very very clear that I knew the code and I would administer the meds if they did not respond.
Oh, dear, if that pain was constant, would I agree to her request to be done. To die. Oh, see it is good for me to write through. Would I agree? See. It is possible to get to the point when it makes sense.
But what if there was hope? What kind of hope? Hope for snow day or hope that Santa is real kind of hope? This is certainly a topic for another day.
Okay. Enough. Time to plan the activities of the week. Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive. The usual.
Oh, I better add Laundry...
I could not type those words yesterday. How do you type those words. While I often think we go to far in Cancer World and don't step back and let kids have comfort before they re-boot, never did I think about letting them ask to die. I never even thought about it.
So let me process this. So we have a child. They are terminal, they have pain that can not be managed with any amount of drugs. They are able to ask to die and I have to agree.
Can a three year old ask? I know a pretty smart three year old, Alistaire. She has had cancer twice in two years. She just wants to be a big girl. She asked her mom if she was going to be a big girl. Does she even understand the word "dead". Even if she asked would anyone be able to "agree". She just wants me to upgrade my phone games. Alistaire does not care about the License Plant Game.
Mary-Elizabeth is now an adult in the eyes of the law. (She has been an adult much longer than that. ) More than once during the process she wanted me to make it all stop. There were lots and lots of time that the pain was beyond what could be given to her safely. Not just once but more than once. Lots and lots of gut wrenching, "I am going to kill these people if they don't help her kind of pain."
New Computer system, nurse on break, new codes, no one on the floor, no one responding kind of deal. I was very very very very clear that I knew the code and I would administer the meds if they did not respond.
Oh, dear, if that pain was constant, would I agree to her request to be done. To die. Oh, see it is good for me to write through. Would I agree? See. It is possible to get to the point when it makes sense.
But what if there was hope? What kind of hope? Hope for snow day or hope that Santa is real kind of hope? This is certainly a topic for another day.
Okay. Enough. Time to plan the activities of the week. Walking, cleaning, job hunting, package wrapping. Waiting for the Christmas Cards to arrive. The usual.
Oh, I better add Laundry...
Sunday, December 15, 2013
Wrapping more than presents.....
Wrapping my mind around.....
Common phrase, common concept. Once you enter Cancer World your mind expands into horrible dimensions, along with your waist line. In the same time, your wallet shrinks and your friends scatter and your life becomes warped. You somehow disconnect from the world in a way that is hard to comprehend. You try to keep hold but at some point you wake up and find the world different, so different than when it started.
While in the middle of the battle, it is hard to reflect on the whys and hows and whens. It is just about now. Then one day you realize it has been months since the last hospitalization or the last cringe when someone sneezes. Things start to work again. You one day leave the "hospital bag" in the house. It is entirely possible to go weeks without needing it. Hospital survival preparation mode "sleeps". It is possible to restart quickly but not be on all the time.
Then one morning while reading the Friday the 13th New York Times, A section, page 4.... you run across an article about Belgium. The chocolate and lace people. Well guess what? They have approved euthanasia for Children.
All I could do was as read the head line for two days. Then I finally read the article. Oh dear. Such an odd and awful possibility. http://www.nytimes.com/2013/12/13/world/europe/belgian-senate-votes-to-allow-euthanasia-for-terminally-ill-children.html?_r=0
Two days, I can't think about it. So as with many of the things I can't deal with in my life, I leave it here for further discussion and thought but I don't believe I could ever agree with this. But then I never thought I would submit my child to thousands of doses of Chemo and radiation and a bone marrow transplant.
Common phrase, common concept. Once you enter Cancer World your mind expands into horrible dimensions, along with your waist line. In the same time, your wallet shrinks and your friends scatter and your life becomes warped. You somehow disconnect from the world in a way that is hard to comprehend. You try to keep hold but at some point you wake up and find the world different, so different than when it started.
While in the middle of the battle, it is hard to reflect on the whys and hows and whens. It is just about now. Then one day you realize it has been months since the last hospitalization or the last cringe when someone sneezes. Things start to work again. You one day leave the "hospital bag" in the house. It is entirely possible to go weeks without needing it. Hospital survival preparation mode "sleeps". It is possible to restart quickly but not be on all the time.
Then one morning while reading the Friday the 13th New York Times, A section, page 4.... you run across an article about Belgium. The chocolate and lace people. Well guess what? They have approved euthanasia for Children.
All I could do was as read the head line for two days. Then I finally read the article. Oh dear. Such an odd and awful possibility. http://www.nytimes.com/2013/12/13/world/europe/belgian-senate-votes-to-allow-euthanasia-for-terminally-ill-children.html?_r=0
Two days, I can't think about it. So as with many of the things I can't deal with in my life, I leave it here for further discussion and thought but I don't believe I could ever agree with this. But then I never thought I would submit my child to thousands of doses of Chemo and radiation and a bone marrow transplant.
Tuesday, December 10, 2013
Christmas seems to be broken this year and stuck like Big Bertha
I can see it all around me. Shopping, trees going up, great candles, special winter food, lights stockings, kids getting excited. I can see it. I just don't seem to be able to step on the same path.
When you are not part of the economic system in a productive way, then your shopping is curtailed. When your child has had a bone marrow transplant and is still on immunosuppressant's and you can't have a Christmas tree, decorating is curtailed. ( yes I am going to look for a fake tree to day but with almost no enthusiasm.)
Ummm, seems I am whining. I have put us some things and have started but can't seem to get into gear. I have been trying to figure out why the tree is so important and I think I figured it out this morning. Lights. What I really really like is when it is dark in the morning and when the coffee is hot and the house is quiet I love the Christmas lights. Maybe the lights on the tree are the key. Maybe the little bit of brightness they bring is the answer.
Okay, I will try again today. Just like they will try with Big Bertha. She is the tunneling machine under Seattle that has hit something. One of the theory's is she hit an old locomotive. The part of town she is going through was where they dumped the dirt and junk from the hills they took down known as the Denny Regrade. See in Seattle, they took down several hills that offended people.(No idea why.)
When you are not part of the economic system in a productive way, then your shopping is curtailed. When your child has had a bone marrow transplant and is still on immunosuppressant's and you can't have a Christmas tree, decorating is curtailed. ( yes I am going to look for a fake tree to day but with almost no enthusiasm.)
Ummm, seems I am whining. I have put us some things and have started but can't seem to get into gear. I have been trying to figure out why the tree is so important and I think I figured it out this morning. Lights. What I really really like is when it is dark in the morning and when the coffee is hot and the house is quiet I love the Christmas lights. Maybe the lights on the tree are the key. Maybe the little bit of brightness they bring is the answer.
Okay, I will try again today. Just like they will try with Big Bertha. She is the tunneling machine under Seattle that has hit something. One of the theory's is she hit an old locomotive. The part of town she is going through was where they dumped the dirt and junk from the hills they took down known as the Denny Regrade. See in Seattle, they took down several hills that offended people.(No idea why.)
So they had to put the dirt and stuff somewhere and evidently some of it ended up in a hole in front of Big Bertha. Now she can go through natural material but someone might have left a stray train engine. Whoops.
She will try after they figure it out. I will try after I figure it out. Try is all we can do. Every day.
Saturday, December 07, 2013
Mandala and Mandela
One of kind of Mandala
Wisdom and impermanence]
In the mandala, the outer circle of fire usually symbolises wisdom. The ring of eight charnel grounds[15] represents the Buddhist exhortation to be always mindful of death, and the impermanence with which samsara is suffused: "such locations were utilized in order to confront and to realize the transient nature of life."[16] Described elsewhere: "within a flaming rainbow nimbus and encircled by a black ring of dorjes, the major outer ring depicts the eight great charnel grounds, to emphasize the dangerous nature of human life."[17] Inside these rings lie the walls of the mandala palace itself, specifically a place populated by deities and Buddhas.Another kind of Mandela
Both fleeting, both important to explaining the universe, both profound. Neither can be truly captured in film, words, photos but both leave a profound profession.
Like the Mandala, the impression Mandela leaves is forever.
Friday, December 06, 2013
Mary-Elizabeth won't let me have chickens or an African Grey Parrot.
I think it is just wrong. I think both would add years to my life and make my declining years more interesting.
She keeps mentioning her dog would eat my bird. I think it is wrong since it is her dog that would each the chickens. I figured the child would not be the adult for a few years. She was born 40 years old. It is how she has made it through the second half of her life. Mary-Elizabeth will have one heck of a second go at being a teenager since she sort missed out on the first. It really makes me sad sometimes but then I just can't dwell on it. I need to worry instead about how bossy and opinionated cancer has made her... She thinks she is the boss of me!!
It is what it is and for now everything is okay.
Can't get much better then that. Of course the temp could climb above freezing. That might be good. Here is the real news. It is so cold here, I have closed most of the windows in my room.
Maybe I could have a turkey... bigger than Tucker... ummm maybe I have landed on something.
She keeps mentioning her dog would eat my bird. I think it is wrong since it is her dog that would each the chickens. I figured the child would not be the adult for a few years. She was born 40 years old. It is how she has made it through the second half of her life. Mary-Elizabeth will have one heck of a second go at being a teenager since she sort missed out on the first. It really makes me sad sometimes but then I just can't dwell on it. I need to worry instead about how bossy and opinionated cancer has made her... She thinks she is the boss of me!!
It is what it is and for now everything is okay.
Can't get much better then that. Of course the temp could climb above freezing. That might be good. Here is the real news. It is so cold here, I have closed most of the windows in my room.
Maybe I could have a turkey... bigger than Tucker... ummm maybe I have landed on something.
Wednesday, December 04, 2013
Someone sent me this link
http://thenotdyinggirl.com/
Another young woman. A relapse. No way out. A bucket list. She is 21 and 22 does not look certain.
I read some of her blog and wonder how much of what she is saying is going on in the head of my child. I am the keeper of Cancer World. I realize this is my gift to Mary-E but someday I hope she reciprocates and lets me know what she was thinking all these years.
We read Katie's bucket list. This is Lauren's
Fall in love
Go skydiving
Ride in a helicopter
Go parasailing
Swim with dolphins
Getting a tattoo (once I am done with my chemo for this relapse)
Have a Christmas on the beach sipping on an alcoholic beverage
Learn to Bartend
Take a striptease class with my best friends
Cook a stellar meal using my Food Network knowledge
Learn how to use the grill
Go backpacking (it seems like I will soon with my other chemo buddy)
Throw a massive party where nothing gets broken or stolen
Volunteer at a Hospice Center
Do some gardening
Be able to run a mile again with my extremely messed up leg
Take a roadtrip
Eat something exotic and completely out of the norm
Go to a nude beach and actually go nude
Go to my college of choice, Florida Gulf Coast University, and be a contributing part of their Division 1 swim team
Become a nurse
Eventually get married
Lots of talk about bucket lists.... I think they are just being mindful of making days and weeks and moments count.
In some moments I cherished today, I watched the birds feed early this morning. It was so cold that when the crow cawed we could see his breath. Tomorrow I may try and take a picture. We shall see.
Another young woman. A relapse. No way out. A bucket list. She is 21 and 22 does not look certain.
I read some of her blog and wonder how much of what she is saying is going on in the head of my child. I am the keeper of Cancer World. I realize this is my gift to Mary-E but someday I hope she reciprocates and lets me know what she was thinking all these years.
We read Katie's bucket list. This is Lauren's
Lots of talk about bucket lists.... I think they are just being mindful of making days and weeks and moments count.
In some moments I cherished today, I watched the birds feed early this morning. It was so cold that when the crow cawed we could see his breath. Tomorrow I may try and take a picture. We shall see.
Tuesday, December 03, 2013
Shifting Gears
Mom should be on the train. She will have a great ride today. It is clear and beautiful, I am sure she will have a chance to see the remnants of last nights cold and rain and promised snow. (We are dry and cold not snow.... darn.)
So for the next few days the agenda will be different. Mom will set the schedule and we will try our best to make sure she has a good time. She has a list of places she wants to visit. We will talk and fuss around the house. I will have to do laundry, the birds will be well fed and the dogs will be walked.
We will gather the friends and family and have a few good meals. We will do a bit of shopping, Good Will, Two Big Blonds. There will be coffee. Good Coffee. Mom will scatter grounds all around the kitchen, we shall laugh and then leave the house on House Keeper Friday with a smile.
It will be a good week. It has been a long time since she came to visit for a visit. Not for a hospital time, or a sick time, or a surgery time, but for a visit. It will be a good thing.
So for the next few days the agenda will be different. Mom will set the schedule and we will try our best to make sure she has a good time. She has a list of places she wants to visit. We will talk and fuss around the house. I will have to do laundry, the birds will be well fed and the dogs will be walked.
We will gather the friends and family and have a few good meals. We will do a bit of shopping, Good Will, Two Big Blonds. There will be coffee. Good Coffee. Mom will scatter grounds all around the kitchen, we shall laugh and then leave the house on House Keeper Friday with a smile.
It will be a good week. It has been a long time since she came to visit for a visit. Not for a hospital time, or a sick time, or a surgery time, but for a visit. It will be a good thing.
Saturday, November 30, 2013
Bookends are dropping off for those of us in the Middle.
The notices come from the edges of our lives. Weird phone calls, notices on Facebook, the odd note from a friend.
They talk about us being the Book-End Generation. We have kids and parents needing our assistance. When you think about it everyone spends some time in the middle and then we become the right end of the shelf. We just happen to there now.
So this week-end has not been good for many of my friends. Two dear friends have lost parents. Lori Mann's dad died while she was desperate to get home to see him. She was not in Tucson because she was going this upcoming week to surprise him for her birthday. Instead she will be waiting with the family for a death certificate. He died on Thanksgiving. She and I decided he ruined Hanukkah.
We both cried on the phone. I assured her she soon would start to breath again. I know it took a couple of weeks for that to happen. The breathing thing is a challenge for a few days. Dads leave such a huge chasm in our worlds when they depart. Mine has been gone for almost three years and I still can't really look in the whole. I can't listen to my saved messages because I don't want to hear his voice.
Bill Nary lost his mom. She was a great spirit. I don't think I met her more than once but know her children. Both of them from different times in my life's journey. Wonderful person. She was upbeat and kind and generous. Someone I was glad to know. She also gave me my first rice cooker before any of us stupid white people knew about them. I don't know what it would be like to be motherless but I am in no hurry to find out.
The left end of my bookshelf returned to Gonzaga today. It was a day early but the driver was wanting to get over the pass before the snow and ice arrived. It was a good decision. They were all ready to get back. It is good to see Gonzaga becoming the alternate home. As it should be.
The right end of the bookshelf appears on Tuesday. She has not been out of Eugene for more than a year. She has lots new to do and see. We are all looking forward to some time with her. She has a list. Two Big Blonds and Good Will are top of the list.
Remember to Take care of your shelf. All of it. Even the middle.
They talk about us being the Book-End Generation. We have kids and parents needing our assistance. When you think about it everyone spends some time in the middle and then we become the right end of the shelf. We just happen to there now.
So this week-end has not been good for many of my friends. Two dear friends have lost parents. Lori Mann's dad died while she was desperate to get home to see him. She was not in Tucson because she was going this upcoming week to surprise him for her birthday. Instead she will be waiting with the family for a death certificate. He died on Thanksgiving. She and I decided he ruined Hanukkah.
We both cried on the phone. I assured her she soon would start to breath again. I know it took a couple of weeks for that to happen. The breathing thing is a challenge for a few days. Dads leave such a huge chasm in our worlds when they depart. Mine has been gone for almost three years and I still can't really look in the whole. I can't listen to my saved messages because I don't want to hear his voice.
Bill Nary lost his mom. She was a great spirit. I don't think I met her more than once but know her children. Both of them from different times in my life's journey. Wonderful person. She was upbeat and kind and generous. Someone I was glad to know. She also gave me my first rice cooker before any of us stupid white people knew about them. I don't know what it would be like to be motherless but I am in no hurry to find out.
The left end of my bookshelf returned to Gonzaga today. It was a day early but the driver was wanting to get over the pass before the snow and ice arrived. It was a good decision. They were all ready to get back. It is good to see Gonzaga becoming the alternate home. As it should be.
The right end of the bookshelf appears on Tuesday. She has not been out of Eugene for more than a year. She has lots new to do and see. We are all looking forward to some time with her. She has a list. Two Big Blonds and Good Will are top of the list.
Remember to Take care of your shelf. All of it. Even the middle.
Friday, November 29, 2013
The Huge Rubber Band that is our life.
It snaps us back on occasion. To that place of quiet reflection and "nowness". All we have for certain is the breath we have just exhaled. It could all just come to a crashing end before the next one
. We must look at just this instant. Look at this small bird darting around or the bit of sunshine coming in the window. We can't look beyond.
Try it for just a moment. Close your eyes. Clear your mind... count to three. Okay try again, Clear your mind.... Okay, Okay, that means you have to not think about the dishes that need washing, dogs that need walking, bills that need paying. Now try again. Inhale....
See it is so hard to do. Our minds are so busy.
While in Cancer World we are reminded all the time. Now, this moment, this breath. Today was one of those days.
Several years ago we ended up in the Hospital for several days during Thanksgiving. No Turkey Sandwich came our way. We make sure it does not happen to those at the hospital again. We take sandwiches over and make sure every one's needs are met.
Going this year resulted in seeing several folks that we know that haven't seen ME for more than a year. The relief they feel when this see her up and walking and looking great is so much fun to see. She has become one of their success stories. We ran into Dr. Anderson. Bob. He has been doing transplants for a very long time. He lacks many social skills but is meticulous and always in line for his coffee at Starbucks at 7:36 in the morning. He doesn't remember my name or Mary-Elizabeth's but he remembers her numbers. He is a funny guy and a good runner. When she said she felt she was going to throw up, he ran so fast from the hospital. During an entire month he was her attending, he only touched her once. An awkward pat on the back: "There There". It was sweet. Today I reintroduced us to him and before we left he gave us both a Hug. A real hug.
We had some time with Katie Elliot and her family. Katie is in the hospital and stuck in Seattle for a couple more weeks. They are very focused on quality of "life" with her. What a snap back to reality.
Good, bad, horrible, success, failure, transplant, no transplant, relapse, complications, side affects, new test drugs, trials, surgeries, procedures, IV's, ports, hickmans, blood draws, it all keeps going on going on. It really makes it hard to worry about whether or not the kitchen is clean or the laundry done.
It needs to be about staying focused on each other. Our time together. Not missing a chance to have some fun or have a picture taken or a movie seen.
We are looking at today. Now. This moment.
Try it for just a moment. Close your eyes. Clear your mind... count to three. Okay try again, Clear your mind.... Okay, Okay, that means you have to not think about the dishes that need washing, dogs that need walking, bills that need paying. Now try again. Inhale....
See it is so hard to do. Our minds are so busy.
While in Cancer World we are reminded all the time. Now, this moment, this breath. Today was one of those days.
Several years ago we ended up in the Hospital for several days during Thanksgiving. No Turkey Sandwich came our way. We make sure it does not happen to those at the hospital again. We take sandwiches over and make sure every one's needs are met.
Going this year resulted in seeing several folks that we know that haven't seen ME for more than a year. The relief they feel when this see her up and walking and looking great is so much fun to see. She has become one of their success stories. We ran into Dr. Anderson. Bob. He has been doing transplants for a very long time. He lacks many social skills but is meticulous and always in line for his coffee at Starbucks at 7:36 in the morning. He doesn't remember my name or Mary-Elizabeth's but he remembers her numbers. He is a funny guy and a good runner. When she said she felt she was going to throw up, he ran so fast from the hospital. During an entire month he was her attending, he only touched her once. An awkward pat on the back: "There There". It was sweet. Today I reintroduced us to him and before we left he gave us both a Hug. A real hug.
We had some time with Katie Elliot and her family. Katie is in the hospital and stuck in Seattle for a couple more weeks. They are very focused on quality of "life" with her. What a snap back to reality.
Good, bad, horrible, success, failure, transplant, no transplant, relapse, complications, side affects, new test drugs, trials, surgeries, procedures, IV's, ports, hickmans, blood draws, it all keeps going on going on. It really makes it hard to worry about whether or not the kitchen is clean or the laundry done.
It needs to be about staying focused on each other. Our time together. Not missing a chance to have some fun or have a picture taken or a movie seen.
We are looking at today. Now. This moment.
Tuesday, November 26, 2013
Watching the Pain of Others...
I just hate it. I see it all around me. I try to enfold it to myself and make it better but sometimes you can only be there to hold someone or give them a shiny object to put on a chain or buy them coffee or swear in tandem with them. You can go to lunch or take them a turkey sandwich or do their laundry or do some shopping or give them a good book or a trashy novel or a magazine.
There is nothing to do but be there. Be there. Sit there. Try to be cherry but know all of the humor and the jokes and the swearing is only covering the deep deep loss and disappointment.
Sometimes it is not the big things like no grandchildren, it is the missed play, or dance or trip to the mall or the movie opening or the real Christmas tree or the fear of new animals, plants, foods, people. All of it is trying.
Some in surgery, some coming out of surgery, new diagnosis, new trials, new issues, new complications, new events faced without a dearly loved child or spouse.
The world if full of craters and sink holes and land mines. No getting way from it. Only thing anyone can do is start to fill in the void, one spoonful of time.
Off to visit someone recovering from the surgeons assault on their body and then to buy crushed pineapple.
There is nothing to do but be there. Be there. Sit there. Try to be cherry but know all of the humor and the jokes and the swearing is only covering the deep deep loss and disappointment.
Sometimes it is not the big things like no grandchildren, it is the missed play, or dance or trip to the mall or the movie opening or the real Christmas tree or the fear of new animals, plants, foods, people. All of it is trying.
Some in surgery, some coming out of surgery, new diagnosis, new trials, new issues, new complications, new events faced without a dearly loved child or spouse.
The world if full of craters and sink holes and land mines. No getting way from it. Only thing anyone can do is start to fill in the void, one spoonful of time.
Off to visit someone recovering from the surgeons assault on their body and then to buy crushed pineapple.
Saturday, November 23, 2013
So When Teenagers are Terminal...
They do things differently.
The little ones, the babies don't really understand. They sometimes talk about heaven and are just not aware as much about what is happening. They know but in a very different way. I am certain they absorb all the love and caring that surrounds them as they return to heaven.
Old people die in a very distinct way. They slowly withdraw from the world and get to a point they don't want to be touched. They know what is going on but they are trying to disconnect from this live so they can be fully present in the next.
Teenagers, those self absorbed, narcissistic, things we try and keep in the house are different. They focus on living. Focus on doing all the things they know they are going to miss this time around. Sky diving, feeding tigers, running marathons, making memories. Driving fast cars, they are trying so hard to pack it all in. I am watching such a child right now. She is trying to do it all. She has a little time, but not a great amount. She is moving full steam ahead and pulling her family behind her.
Her family is mourning the loss of her future. Her loss of all the things we plan for our children. College and love and children. Cancer kids loose bits of that not matter how good the outcome. There is loss in so many new and amazing places. It is what it is. It is hard and heart breaking and real. They are also by her side.
I see endless pictures of Katie on her adventures. Photos and videos, memories being made and lists being filled and things being accomplished. She is done doing heroic medical things. There will be no cure. There will be only the small actions to keep the status quo for as long as possible. Nothing more, nothing less.
One thing I know is that the teens are painfully aware of how their departure will create a Winslow Size Crater in the lives of their families. They understand the pain of loss will never be healed. They don't want to leave but know they don't have a choice. They have to go and they know it. They are deeply worried about their Mom and Dad. In some way this worry bothers them the most. I think it is the reason for lots of the bravery. The frenetic activity to create endless good memories. It isn't for them. It is a gift they can give their family. "Remember when we got to see Pink?"
Katie and Darlis on the last big adventures. My heart is breaking for all of them. Cancer World simply sucks. There is no other way to say it. Sometimes we get together and just cry and swear and curse and then we cry some more.
We talk about how brave our children are and how great they do. I realized several years ago that the bravery comes from everyone. They mirror back to us the strength we have given them. Yes I am patting Cancer Moms on the back and we deserve the pats. We need all the strength we have and can muster in dark times to pass it on when it is needed to hold up the next person, the last person, the again person entering Cancer World.
Lets also be clear, I don't pretend to really understand what those I have loved and lost are going through. My comments are from a place of observation. We are all in the big soup pot of pain and worry and loss. It is different for everyone. Because as a Cancer parent I have to be ready to face the worst, I have asked, watched, listened and cried with the rest of them. Not an expert, not from personal experience. I just needed to say a few things.
We all learn and teach each other. I have watched Mom's grasping to each positive change like it is a sign from God. I have watched the long group of people come and go from the room with the single nurse and the announcement asking we all stay in our rooms. I have watched the person's name be moved from the regular room to ICU and then disappear. I have held the hand of the mom that doesn't know what option to choose, another round, a study, an iffy transplant.
We all need to pay more attention to the teenagers. They are out there making the most of it, at least on the outside. They are running as fast as they can for as long as they can. Making each day a day of creation. Its not fear or trepidation, it is living.
The little ones, the babies don't really understand. They sometimes talk about heaven and are just not aware as much about what is happening. They know but in a very different way. I am certain they absorb all the love and caring that surrounds them as they return to heaven.
Old people die in a very distinct way. They slowly withdraw from the world and get to a point they don't want to be touched. They know what is going on but they are trying to disconnect from this live so they can be fully present in the next.
Teenagers, those self absorbed, narcissistic, things we try and keep in the house are different. They focus on living. Focus on doing all the things they know they are going to miss this time around. Sky diving, feeding tigers, running marathons, making memories. Driving fast cars, they are trying so hard to pack it all in. I am watching such a child right now. She is trying to do it all. She has a little time, but not a great amount. She is moving full steam ahead and pulling her family behind her.
Her family is mourning the loss of her future. Her loss of all the things we plan for our children. College and love and children. Cancer kids loose bits of that not matter how good the outcome. There is loss in so many new and amazing places. It is what it is. It is hard and heart breaking and real. They are also by her side.
I see endless pictures of Katie on her adventures. Photos and videos, memories being made and lists being filled and things being accomplished. She is done doing heroic medical things. There will be no cure. There will be only the small actions to keep the status quo for as long as possible. Nothing more, nothing less.
One thing I know is that the teens are painfully aware of how their departure will create a Winslow Size Crater in the lives of their families. They understand the pain of loss will never be healed. They don't want to leave but know they don't have a choice. They have to go and they know it. They are deeply worried about their Mom and Dad. In some way this worry bothers them the most. I think it is the reason for lots of the bravery. The frenetic activity to create endless good memories. It isn't for them. It is a gift they can give their family. "Remember when we got to see Pink?"
Katie and Darlis on the last big adventures. My heart is breaking for all of them. Cancer World simply sucks. There is no other way to say it. Sometimes we get together and just cry and swear and curse and then we cry some more.
We talk about how brave our children are and how great they do. I realized several years ago that the bravery comes from everyone. They mirror back to us the strength we have given them. Yes I am patting Cancer Moms on the back and we deserve the pats. We need all the strength we have and can muster in dark times to pass it on when it is needed to hold up the next person, the last person, the again person entering Cancer World.
Lets also be clear, I don't pretend to really understand what those I have loved and lost are going through. My comments are from a place of observation. We are all in the big soup pot of pain and worry and loss. It is different for everyone. Because as a Cancer parent I have to be ready to face the worst, I have asked, watched, listened and cried with the rest of them. Not an expert, not from personal experience. I just needed to say a few things.
We all learn and teach each other. I have watched Mom's grasping to each positive change like it is a sign from God. I have watched the long group of people come and go from the room with the single nurse and the announcement asking we all stay in our rooms. I have watched the person's name be moved from the regular room to ICU and then disappear. I have held the hand of the mom that doesn't know what option to choose, another round, a study, an iffy transplant.
We all need to pay more attention to the teenagers. They are out there making the most of it, at least on the outside. They are running as fast as they can for as long as they can. Making each day a day of creation. Its not fear or trepidation, it is living.
Tuesday, November 19, 2013
Time Away trying to reconnect to the world.
It seemed the thing to do at the beginning of my 60th year. Travel back into the past. A place well documented and familiar.
Threw a few things into the car and headed to
the Davenport in Spokane. It has a couple of touch points for me. Grandma Foster and I went there for a couple of nights and Thanksgiving Dinner one year. I am sure I was in law school at the time. Maybe teaching, I have to work on figuring it out. We stayed in what I would call a very "period" room. Not a good period but it reinforced the importance of the public areas. In the old days it was enough to have a grand place to sit. The room was secondary.
I went to a conference in Spokane pre-relapse and stayed at the Davenport. It had been "re-done". Goo had been removed from the wonderful Lobby beams. Years of cigar and wood smoke revealed lovely gold and green and red. It is truly a wonderful place to go and remember. Even if your memories are not from there. It is a place to remember. It has seen so much. The impressions of presidents and real celebrities like Amelia Earhart and a women in white that haunts one of the ballrooms. Yes, ball rooms, more than one.
John is the door man and he has worked there for 59 years. He is in his 80's. He comes with black gloves and hat and red coat. He has seen it all. There are places in the marble floors worn with the years of standing bell man. When you walk up to the concierge desk you step into a place also worn by millions of people that stopped and inquired about something. All the requests vibrate up from the floor. All the requests...
Sometimes visits to such places are required. A place to sit, think and to know despite what whirls and swirls around you, life does go on. It is sort of like the back drop. It just sits there and supports you with some continuity. When it feels like nothing but crazy and out of controlness is happening, there are places where things are the same and have been that way for decades.
I am headed into a new decade. It will full of change and challenge and struggles but then I know there are places I can go to find a bit of quiet.
Threw a few things into the car and headed to
the Davenport in Spokane. It has a couple of touch points for me. Grandma Foster and I went there for a couple of nights and Thanksgiving Dinner one year. I am sure I was in law school at the time. Maybe teaching, I have to work on figuring it out. We stayed in what I would call a very "period" room. Not a good period but it reinforced the importance of the public areas. In the old days it was enough to have a grand place to sit. The room was secondary.
I went to a conference in Spokane pre-relapse and stayed at the Davenport. It had been "re-done". Goo had been removed from the wonderful Lobby beams. Years of cigar and wood smoke revealed lovely gold and green and red. It is truly a wonderful place to go and remember. Even if your memories are not from there. It is a place to remember. It has seen so much. The impressions of presidents and real celebrities like Amelia Earhart and a women in white that haunts one of the ballrooms. Yes, ball rooms, more than one.
John is the door man and he has worked there for 59 years. He is in his 80's. He comes with black gloves and hat and red coat. He has seen it all. There are places in the marble floors worn with the years of standing bell man. When you walk up to the concierge desk you step into a place also worn by millions of people that stopped and inquired about something. All the requests vibrate up from the floor. All the requests...
Sometimes visits to such places are required. A place to sit, think and to know despite what whirls and swirls around you, life does go on. It is sort of like the back drop. It just sits there and supports you with some continuity. When it feels like nothing but crazy and out of controlness is happening, there are places where things are the same and have been that way for decades.
I am headed into a new decade. It will full of change and challenge and struggles but then I know there are places I can go to find a bit of quiet.
Monday, November 11, 2013
A 17 year old's bucket list....
Europe
Australia, New Zealand
Cedar Point in Sandusky, OH (She’s an adrenalin junkie that loves roller coasters!)
Mexico (this one is taken care of already by dear friends. We go in December.)
NHL game – Penguins or Blackhawks
NFL game- Seahawks (bet you thought it was gonna be the Patriots. I did!) The Seahawks have stolen her heart.
Phantom of the Opera on Broadway (it’s her favorite movie and someone told her the Broadway production made the movie look like it was done by kindergartners.)
Snorkeling (this one might be accomplished in Mexico next month, but it all depends on how healed she is.)
This is not her complete list, but it’s what she whipped off in five minutes one day at lunch so I figure these are her top wishes.
No seventeen year old should ever have such a list. It should be a life list. It should not be needed right now. There should be endless time for seeing and doing and completing. She should go Snorkeling. With her buds on Spring Break. She should go see Phantom of the Opera with girlfriends while on a road trip across the county. She should be backpacking through Europe for a summer. Every kid should sleep on a train while doing a year abroad.
Katie has a bucket list. It is short in some respects, endless in others. Her chances are not the best of completion. A lobe of one lung was removed this week. In January they go in and look at the other one and certainly part of it has to go.
She is an Osteo Kid. Her achy bones were not growing pains. She has never really been finished with her treatment. Chemo to reduce the tumor, surgery to remove the tumor. More chemo, more surgery, more scans, more surgery. She and those that love her know that she must make a special effort to complete the Bucket List because the time is short.
Some ask how come I keep in touch with "those" people. How do you leave people you know and not try and help someway?
If you are looking for away to help. Darlis Elliot is the mom. She is on Facebook. She can best direct your efforts. Tell her I sent you.
No seventeen year old should ever have such a list. It should be a life list. It should not be needed right now. There should be endless time for seeing and doing and completing. She should go Snorkeling. With her buds on Spring Break. She should go see Phantom of the Opera with girlfriends while on a road trip across the county. She should be backpacking through Europe for a summer. Every kid should sleep on a train while doing a year abroad.
Katie has a bucket list. It is short in some respects, endless in others. Her chances are not the best of completion. A lobe of one lung was removed this week. In January they go in and look at the other one and certainly part of it has to go.
She is an Osteo Kid. Her achy bones were not growing pains. She has never really been finished with her treatment. Chemo to reduce the tumor, surgery to remove the tumor. More chemo, more surgery, more scans, more surgery. She and those that love her know that she must make a special effort to complete the Bucket List because the time is short.
Some ask how come I keep in touch with "those" people. How do you leave people you know and not try and help someway?
If you are looking for away to help. Darlis Elliot is the mom. She is on Facebook. She can best direct your efforts. Tell her I sent you.
Subscribe to:
Posts (Atom)









