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. 

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.


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.  

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. 

 
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.

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.
 
 
 

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...

 

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.  





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.)
 
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.

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.

    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.