Saturday, April 30, 2005

One more................................. Thank God

One more, one more possible dose of Methotrexate IV. One more. I hate this stuff. In little doses it is okay. In pill form, I am hoping it is tolerable during maintenance. But this stuff is a killer. Within 15 seconds of the infusion beginning, she goes from a happy child with color to a silent white blob. There is no other way to to describe it. It happens so fast. Our fellow was even shocked when she sat with us for a chat last time.

One more dose........

M-E and I were driving home and she saw a red mini cooper. She said there is my car. I asked how old she was going to be when this was over and we realized that she would not be old enough to drive. I then said that when she was 5 years cancer free we would try and get her a used mini cooper. She broke into sobs. I couldn't believe it. She was in true agony. I inquired and she exclaimed "Mom I cannot do this for 5 years." She had thought I said treatment would take 5 years. I explained that people have cancer free anniversaries and that it was a good thing.

I took her a long time to get over what she called the "Scare" .

I realize that it is now time to address the healing of her soul. I am going to talk with my sister about the Navaho healing ceremony. I am going to talk with Mr. Boyle about doing one for her at the school before the end of the year. Sadie is coming home, we are going to do lots of Venice planning. We need lots and lots of prayers.

We have one more dose but it is not over yet.

Thursday, April 28, 2005

Things are not as they seem

AS I gaze out the window, it looks perfect. Yesterday the houses across the street changed drastically. The port-a-potty left, the grass rug showed up. Two dozen gerber daisies were planted. The house numbers went up thus completing the perfect picture I am looking at today.

So many people just look at the surface. There is so much more to the story across the street. We have watched the process from the beginning. Carrol moving his stuff, oh my god he had stuff. The taking down of the old holly trees, the removal of the concrete and the house. The filling of the original foundation. The setting of the forms, the pouring of the cement footings, the slabs, the first sticks of wood. Step by step towards this perfect view.

But then things are not always as they seem................ One of the houses is built over the old filled in foundation. It has the best view but it is gong to settle. The dirt under the grass is marginal at best. The green is going to leave very soon. The flowers that were planted are pretty but they favorites to the snails and slugs and demand unending sun. They will just protest and die. The stone and the shakes are very interesting panels of material and not the real thing. It should be interesting to see how things hold up. In all fairness they are darling. They are an asset to the neibghborhood and I could not be more pleased with how they look. But....

It is like M-E right now. She appears fine but she is deeply damaged. I think it is time to take some time and address that. She has been in tears a lot. The smallest thing brings her to the brink. She frets about so much. Little things. I have to be so careful. She has -1764523 disappointment threshold. I do also.

I was going through my office files and I found a folder titled SUMMER 2004. I opened it up and there was the summer. All planned out. All set up. Including the June 17th eye exam, culminating in our trip to Spirit Lake at the end of the summer. It was a great summer plan.
I realized as the tears came that we would never have such a sense of freedom and abandon again. I also realized that we did not fully understand what we had at the time. It was truly a different world for us than this one we live in now.

My mother would be proud. I picked up the phone called CYO and asked if they would let her come to camp. I had not even considered the possibility but then decided they needed to tell me know. I could not let our former life be completely taken away. It was only going to be taken if I let it. Good news, she gets to go, Bad news the horse camp is full. We will do horses another way.

Things are not what they seem but they are better than can be expected because I won't let them be any other way.

Wednesday, April 27, 2005

M-E is folding a thousand cranes

M-E has decided she need to fold a Thousand Cranes. Origami Cranes. Over the years she has learned how to fold them, we all have. We had forgotten how to fold them and had been searching for someone to re introduce us to the method.

On the trip to Portland on of the boys knew how. I found paper in Portland and the process began. She wants to do it herself and has developed a very expensive habit. She likes only the "good" paper. Evidently slick paper does not "feel" right. So I will be trekking to China town to restock. She has done about 150 and they are beautiful. She was going to ask Mr. Boyle if he would let her hang them at the school.

If you fold a thousand cranes your wish comes true. She needs a bit of that right now. She is very much on the edge. Her nerves are frayed and she is very fragile. She looks great, she is going to school most days, she smiles and laughs but it is a very thin thin front. She can not stand change and is so worried all the time. She pulls back into herself and just sits there. I think we need to worry more about her mental state than we have.

She will get her wish. I wonder where I could hang my 1000 cranes.

Tuesday, April 26, 2005

Do You Think I Should Start Worrying?

I had a dream. Not unusual but a very weird dream. I was on vacation with M-E, Whitney, Parker, Ruth and my Grandmother. Now Grandmother died in 1996 but made it for this trip. We were traveling in Europe in a vehicle that had enough room for all of us to be comfortable and for the giraffe we had with us. We were gathering animals to take to some zoo in some country. We also had an antelope or two.

We were driving in the alps and came to this house and decided we would stay. We parked the vehicle in the field and everyone went into the house. We had dinner and did not seem worried that the owners were going to be upset that all these people were there. I slept in the back of the truck with the giraffe and went into the house when the SS showed up to check our passports. I had to dig a long time in my purse to find them. I kept pulling out lots and lots of stuff that was just junk. See I told you this was a weird dream (HaHa) Then we discovered that the SS were really UN workers in disguise and not a problem.

They left and we started cooking again. A gentleman pulled up and the kids and I tried to communicate with this guy who did not seem upset that there were 6 strangers in his house. I kept speaking a bit of German and Spanish to him and we were able to figure things out. We determined that he was not German but rather Austrian which seemed to be an important at the time.

He came home and started to make an apple tart with only a little bit of crust and dried apples. What was he thinking?. He seemed to have his own kitchen. We had to change rooms and started to explore this house and found lots of bedrooms and bathrooms. Whitney was upset that her bathroom only had a tub but loved her bed room. I was upset because I could not get anyone to help me get the giraffe out of the truck for some food and exercise. Then I woke up.

So do you think I should start therapy today or is it too late?

Monday, April 25, 2005

M-E's Letter to Make-A-Wish

Dear Make-A Wish Board

My name is Mary-Elizabeth and I am 12 years old. I
will be 13 on July 4th 2005. I have ALL a form of
Luikemia. I was diagnosed on Friday the 13th of
August 2004. I have not been able to go anywhere
since I was diagnosed and feel like I am kept in a
little box.
The treatment has been horrible because of all the
chemo therapy. I have missed a lot of school and my
friends. They come and see me but they are mostly at
school. I have missed going on trips or even to the
movies. The hardest part has been not having all the
energy I used to have. Sometimes I don't even want to
talk on the phone to my friends. I have had to spend
a lot of time in bed and it has been hard.
Many things have helped me. One is my best friends
Whitney Verhoff and Laura Breshock. They have taken
every step with me. They have been understanding
about what is going on and why I can not do things.
It has also helped alot to know that I can make a
wish. I have thought about my wish almost every day.
It has helped me to keep going because I know that if
I quit treatment, I won't be able to have my wish.
My first wish was to go to meet Oprah and go to her
show where she gives away her favorite things. I was
going to be able to see my friend Laura who has moved
to Chicago. I was going to take Whitney with me. We
were going to have a great time together. Rachel told
me that if my first wish was not granted, (Which is
wasn't) I had to have two other wishes. My second
wish was a trip to Venice with my mom and Whitney and
her mom. My third wish would be to go to Hawaii and
Swim with the dolphins. I would like to visit the
lava flows. I would want to stay at a place on the
beach with a pool. I love to swim. I would want to
relax and be on the beach a lot.
Rachel said we can go to Venice and I have lots of
reasons I want to go to Venice. Let me explain.
I went to Venice before with Whitney on a day trip
when we were in Germany. Both Whitney and I knew we
would want to return someday. It was really pretty
there and we wanted to explore it more. We loved the
ice cream and how friendly people were. The only
people on time limits were the Americans and we wanted
to go back when we could act like locals and just sit
and watch people go by. We also both love art and we
wanted to visit Murano and the art museums and
churches. We loved the boats and canals and the fact
that there are no cars. We did not have time to try
the real food. We just had pizza. I want to have a
chance explore everything.
There are some things I want to do. I want to go to
Murano and visit the glass blowers. I want to have a
chance to watch them work. I love glass blowing and
would love to see as much as I could. I would love to
meet mask makers and watch how they make the masks. I
home I can bring home a mask and some glass.
I would like to also go to Padua and find St. Anthony
and see his tongue. We are Catholic and St. Anthony
helps us find lost things. I have needed his help
alot since I had radiation. I don't want to go with
my mom to all the churches. She wants to light
candles in all of them. She is a bit crazy. I would
like to take a gondola ride and visit some places the
tourists don't ususally go so I can find a peaceful
place to sketch. I would also like to visit an art and
paper store. I know they have special paper in
Venice. I would like to visit an artist that paints
Venice. I would like to bring a special little piece
home. But most of all I would like to have lots of
time to just blend in to the town and wander around.
I want to take Whitney and her mom because she is my
best friend. We have been friends since first grade.
We have had class together and traveled together on
several trips. She and I were on vacation when I was
diagnosed. She and her family are my second family. I
can not imagine going on a special trip without her.
We have been doing lots of research on Venice. I have
done research on Venice and the things I want to do.
I have looked at lots of guide books and art books. I
am making my second room a Venice room. I am very
excited about being able to go.
I have three more months of very intense therapy. I
start my maintenance in August. I should have my
energy back in time to go in October. I would like to
go when there are not too many people visiting Venice.

Saturday, April 23, 2005

Home is a Great Place

Leaving town was very exciting. It was exhausting to try and keep things on track but the trip went great. Lots of good times. M-E is exhausted by all of it but it was well worth it. We are still recovering from the after affects, my suitcase is not unpacked. The house could use a little work and Lucy is still not very happy with us.

I decided I just needed to rest and sew a bit today. I have not done that for awhile and it was good to see that I knew how to cut and paste a bit.

I was in the car by myself on the way home. It was the first time I had been so far from home. I was remembering the long drive from Chelan to Seattle. I just started to cry. The tears just came from nowhere. I realize I have been under enormous stress for a very very long time. I had not had time to just sit with it and make it my friend. I needed to do that. We are a family that moves onward and upward and forward and one of no regrets. It tends to keep you in motion which is good but sometimes you have to stop and check in. I did some checking in on that right home.

I stopped for a hamburger at BurgerVille. I grabbed some things from the back of the car and found a poem in the St. Joe's bulletin. Father Chris was discussing the death of John Paul II and shared this poem with us. Granted it is a poem about death but more than that is a lesson in how to live.

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measly-pox;
when death comes
like an iceberg between the shoulder blade,
I want to step through the door full of curiosity, wondering;
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possiblity,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say: all of my life
I was a bride married to amazement.
I was a bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened
or full of argument.
I don't want to end up simply having visited this world.

by Mary Oliver

I am glad we went on our little adventure. I am glad that I had a few moments to sit with myself. I am glad that I found the poem and that we are home. I feel pretty confident that we are living to the fullest and more than just visitors.

Wednesday, April 20, 2005

We Made It.......

7 children and three chaperones are sleeping. I am asleep at the computer. We made it to Portland.

Only a little drama. Just know that if you do not board the train at the Seattle station, you are able to catch the same train further down the road, if you have a car that can take you.

M-E is a bit tired. She was doing okay until about 3:00 p.m. She then simply collapsed into bed. I hooked her up to a liter, we had a bit of room service and she went to sleep. She is having a great time. She understands her limitations. It does not make the disappointments any less. She did not have the energy for the play. We stayed in and ordered room service and watch a movie. It was sort of nice.

I always think that she is okay because so much of the time she is but about 7:00 p.m. she dug in the drawer and pulled out a box and put on a special necklace and a one of favorite pairs of earrings and saddly said "Mom, was so ready for the play. I had the perfect outfit and the perfect jewelry." Sometime I think that the worst part of this disease is that our hearts break a little bit at a time. Maybe a better way to look at it is that our hearts were shattered into a million pieces at 8:35 a.m. August 14 2004. Despite our strength and faith and hope, bits and pieces of those shattered heart fall to the ground on occasion. Little reminders that no matter how much we try to return to normal, we are in the middle of the battle of our lifetime.

Okay, I recognize that last paragraph is a bit grim but who can blame me. I am drinking coffee designed by the Pod People. It is Starbucks but it is not going to be enough for the rest of this day. We are in a great Portland Hotel with big rooms and nice furniture and wireless internet. We have two televisions, three phones, a magnifying mirror so I can see all my wrinkles, and an endless supply of stocking stuffers for Christmas (Shampoo etc). It is those little coffee pots with the pod coffee that make you realize that true coffee drinkers are not as valued in this world as they should be. To make matters worse, there is always a decaff pod of coffee to be brewed, I am sure that if you carbon dated the decaff you would find that it is more than 10 years old. No one that stays in a hotel like this drinks Decaff. The are the drink wine in the lobby at 5:00 group.

Well I am going to forge for real coffee. Coffee People is on the corner and I may slip on my jeans and look like a native and go........

Sunday, April 17, 2005

Dear Make-A-Wish

I wanted you to know how much I do appreciate your organization. I know that you have a great yet some times sad job. Make-A-Wish. I had heard about you before we were eligible for your services. I knew that you provided services to dying children. I knew that you were out there. I have been lucky enough to send you money on behalf a clients that have died. You are sort of like the American Red Cross. We want to know that you are out there doing good works but we don't want to ever ever need them.

Within hours of being told that Mary-E had lukemia, we were also given the news that she now qualified for a Wish. That news brought great joy but also a very sobering sad realization. You also thought M-E could die. More accurately, you have had enough experience to know she might.

It was fun exercise. M-E and her friends have spun great wishes. Great big ideas.

1. Lap Top computer. Practical, needed and cool. (Rejected....Mom will get me one)
2. Disney Land: No (I have been there more than once. Even if you get to stay in the real Disney Land Hotel and get front of the line passes.)
3. Aunt Belle's Version: John Travolta flys to Seattle with Tom Cruise as the Co-Pilot, picks us up in his 727 and flys us to Chinle Arizona to pick up Aunt B and then continues to Austin Texas where we meet the head of Dell Computer, who gives us lots of laptops while we meet Lance Armstrong. Then continue on to Disney World where Brad Pitt will take us to all the rides via Golf Cart. (When asked who John Travolta was she said: He is the one that has a plane.)
4. Whitney's Wish: Go to Oprah on the day that she gives away her favorite things. Spend the day at the American Girl Store shopping and see Laura(there other best friend that moved last year to Chicago). ( Oprah does not do Make-A-Wish.) This was her first choice but then Oprah said no and we went on the next wish.
5. Go to Venice with Ruth and Whitney and here we are.(This almost floored me.)

You have said we could go to Venice. She has been to Venice with Ruth and Whitney for a few hours when she was able to go on the Verhoff family vacation. They have included her in a number of adventures and she has always had a good time. When we knew Venice was on the list we looked up some things and did some prep work for it. She was ready to love Venice. She knew about the four horses and St. Marcos and lots of other things. She discovered that Venice was in her soul.

When we were talking Rachel and Tanya she began to speak about Venice in ways I had never heard her talk. She talked about the ice cream and the Masks and how she wanted to bring one home. She talked about the glass and her desire to see the glass blowers. She talked about how it felt to be there and how she wanted to have time to really be there. Just there for a long time. Time enough to understand it.

Since you have said yes, she has been so excited. We have looked at guide books. Friends have sent her guide books and maps. I am on a Venice Memorabilia hunt. Pictures, gondola rotating music boxes, old souvenirs. It has been fun. We have been looking at a great set of books that Alison gave us a few years back. We have been reading about Venice on the internet. It has been a good distraction.

I don't thing you will ever understand the joy that this process has brought her. She is of an age that this is really a great thing for her to look forward to at this time. She is a bit worried that I mean it when I say I am going to light a candle in every church in Venice. But I am serious. I want to leave as many prayers in a place we love as I can.

I know we are not out of the woods. We are planning to go in October of this year. Many people have asked why we don't wait. I am not going to wait. I know of a family that did wait. They will not be fullfilling Kelsy's wish of going to Disney Land. I have learned that it is important to enjoy each moment. I know we run the risk of not being able to go. I know she would be devastated. I have learned not to tell her about things too far in the future because things are so tenative but I have to also not stop planning a future. We need a future to work towards.

I have wondered where this wish originated. As I have heard her speak to her friends over the past few weeks she was truly affected by Venice. She remembers the strangest things. The bathrooms cost .20, the stolen horses on the front are not the original. The real ones upstairs.
The ice cream was the best in Venice. She remembers how long she was there and was wise enough to know she wanted to return.

I know we are going to have a good time. I know that you will take good care of us while we are there. I hope that we can some how repay you in the future.

Thanks again.

P.S. She also wants to take one side trip to Padua and see St. Anthony's tongue. Whitney agrees that would be cool.

Saturday, April 16, 2005

No Matter How Normal..........

WE have been affected by this journey. We are very different people. Our perception of the world will never be the same. Things are not viewed the same way. We are forever changed by what has happened over the last 9 months. Something happened last night that made me realize some changes have occurred despite our need to keep things "normal".

We went the mall for dinner. M-E seems very bonded with Red Robin. Ironic it is my least favorite place. She has been able to eat the burgers pretty constantly and the milkshakes with extra whip cream have helped keep the weight on. (There is phrase I never exected to type.) We looked for shoes and then everyone wanted icecream. We went to Dairy Queen and M-E wanted a blizzard. Well I watched the employee make one for someone else and there was not way was she going to have one. The collars that the blizzards are made with are kept in this puddle of icky dirty water. I saw her wipe her hands on her jeans and that was it. I started to look at the entire place and realized that it was a candidate for one of those Oprah, do you know what is in your kitchen shows. I shuddered and she had a Sunday.

I have never been squeamish. Iron constitutions and not much sense. It has served us well. Now, I am becoming one of those people that worries about silly things like how long things have been sitting out or whether the lettuce has been properly washed.

The world in general is much less safe. Danger lurkes in places it never lurked before and I hate to see the world in the negative connotation. It is like a person that buys a car and then every car on the road is identical. Those cars were always there but were never notices. The world is full of danger but we had the luxury of ignoring most of them. I can see how people become obsessed with germs and cleanliness.

The only part that makes it all manageable it that I know it will pass. Or it will recede into the back of my mind,.

Well on the other hand, can you imagine me becoming a Germ-A-Phobe. Oh yeah, thats right. See things are better all ready.

The Porta-Potty is still across the street but the fence is up... Yuck.... and the houses look ready for the open house tomorrow. I will let you know the price.

Friday, April 15, 2005

Giggles and Girl Worries

There is no school today. Something about in-service was claimed. I know that all the teachers are doing their taxes and I support there need for a day to meet with their accountants.

M-E and Whitney were able to have a sleep over. It was such a normal one. We had dinner, then popcorn and pineapple,then a couple of hours of useless time in front of the television. Then the best hour. The hour of giggles and talking about boys in a very normal 12 year old way. I walked in and they were having such a good time. They were discussing the things they wanted to do on the trip to Portland and how that was going to work. They were planning the perfect field trip and choosing the chaperones. They were talking about where they would be going and what they would do.

It was so nice to here happy sounds from the bedroom. It has been so long. I can see that we are going to have more of those days. It was a great way to silently slip into the 9th month. Day by day we are regaining our footing and learning to trust the world a bit.

We are able to stay in this space until the 24th of May. She will then have one last stage of intense Chemo. The ugly stuff but then we start maintence.

We can do that. We have learned that we can do and handle a lot. More than we wanted. I know that things will never be the same but many good things have come from our journey. We have connected with our faith in a special way. We have learned to receive rather than give. We have found deep strength and a staying power from places we never knew. We have learned who our real friends are. We have found new friends. We have learned to wait and be patient. We have found a haven in a place of hope and sadness at Children's Hospital.

We now have to learn to trust again.

Thursday, April 14, 2005

We are Sticking our Heads out a bit

Month 9. Oh, thank God we are moving through this process. I say that with more confidence all the time. My new chant, three more months, three more months, three more months. Oh, I hope that is all we have to do.

We have had a fair amount of drama over the issue of a Portland field trip. The art class is going on the train to visit several cool places in Portland. Galleries, museums, the Art Institute, the Grotto and a play. We were supposed to stay at the Marriott and have a pool. The person who was supposed to confirm was traveling and we lost the reservation. M-E, my normally calm and reasonable child, cried and sobbed at the news. The "no pool" sobs became a torrent that covered every thing from Sadie being gone to missing the class picture day. The single incident just was the last straw. This reaction just let me know how truly hard this process has been for her and emphasizes to me how very strong she has been. So seldom does she let it get to her.

We are going to go anyway, despite the pool issue. I am worried because she has a bigger dose of Methotrexate on Monday and I am supposed to put her on a train on Tuesday morning. She is going to be so disapointed if she does not get to go. I am going to drive so I can keep her close. It should be interesting. I am glad we had the practice trip to the Westin. I learned a few things about how to travel with her. It is different now but doable. There is a good hospital in Portland so we will be able to get help if we need it. I am planning on no need for medical intervention but know that at a moment's notice we can have one of those life changing complications.

M-E seems to be coming around though. She felt like talking to Laura B. last night. She sometimes does not have phone energy. She has been to school all week and doing fine. She is getting stronger every day. She is reaching out a bit more and I am trying to work more and inch away from her. She pulls me back on a regular basis but that is fine.

We are getting ready to rejoin the world again. Small steps, but then they are sure steps and we feel ready.

Tuesday, April 12, 2005


Interim..... a very funny word. It is a word that we use in Luikima world a lot. Now we are in Interim Maintenance. I think this is what Limbo is like. It is a time of waiting and contemplation before we start the next part of our journey.

I hate to wait but I have learned a few tricks on how to wait. M-E does it with so much more grace. She is such a trooper and has such inate wisdom. We all have more expectations of her because of her special and marked qualities. She seems to think that we under estimate her abilities. I don't think I could ever get it right at this point in her life but then that is a very important part of her adolescence.

She stuggles deep in her heart. She is so brave and so stoic about it. Sometimes cracks appear and tears flow. I take every chance I can to let the tears find there way to the surface. I know they are there and they need to escape. I feel like an old fashion doctor who has to use a hand held probe. I ask the hard questions, are you afraid you are going to die? Are you afraid that you are going to relapse? Her answers are always postivive. " No Mom. I have not had any of the problems of the people like the people that have died." I am not morbid about the questions but it seems that every book she has read recently has had some child in it that is sick. I am glad that she does not see herself in those other children. I hope that she never has to.

We all are in an "Interim" state during our lives. We are all waiting for the next stage. Maybe the lesson here is that we should spend less time waiting and more time understanding that this is where we are at this point and time and be content with this part of the journey. No time wasted doing the "What if we had....." Only spending time on the moment at hand and looking forward. Looking in the rear view mirror only makes you miss the next exit and we really want to get there.......

P.S. The houses across the street are almost done. I think the sign that they are ready for the market will be when the Porta Potty goes away.

Saturday, April 09, 2005

The Slugs have to Go

Sad but true. Slug and Snail death will be coming soon to a garden near you. Or more accurately , me. I went outside today and the snails had eaten the winter pansies. Now they had not eaten the leaves, only the blooms. I started to look around and let me tell you. We could feed the entire city of Paris and still have some to share with Spain.

It felt so good to go out into the garden and do some yard work. I even went for a walk around the block. It was a good adventure and I only "pruned" one small clump of Lilacs that really really asked that I take them home for M-E. The world is coming back to life with a vengeance. I think is what gives the human spirit hope. The trees and grass and plants never give up. Why should we?

M-E is in bed for the third straight day. She has not been able to get out of bed at all. She is reading and did not even want to go and sit in the sun. It was very hard to watch her in this state. I am hoping she will rally for dinner. Mom is making Sour Dough Pancakes. We have been told that no matter what, we are to tell Father his are better. She had her second dose of methotrexate and they gave her more than the first dose because she her liver was not too mad. Now she is mad at her liver. Do you think that counts?

We are settling into nice weather. Fluffy clouds, leaves out on the Katsuras, lots of bird noise in the A.M. It is a time when that first cup of coffee can be had on the back deck or even better in the early sun on the 7th grade project which is cement bench with tiles. ( I may even get a picture of it soon and get it on the blog.) The bench is warm by the time the coffee is brewed and a few quiet moments are refreshing and much needed.

Things are okay. M-E simply cried last night because she feels so bad right now. She was just not ready to do this process again. It is especially hard because she is getting more treatment because of Frederica and her age and her failure to go into remission before day 7. She knew it was coming but right now it feels worse than it is. I was talking to Mom this morning and we realized that she has almost made it 8 months. 3.5 more to go before maintenance. We can do it. I think one thing that makes it hard is that she never felt the affects of the Likemia. She only felt sick from the cure. We can do it. I know we can. On to bigger and better places in our lives and Fred Meyer to get snail and slug bait.

Thursday, April 07, 2005

Three to Go

Two down, Three to Go. I love that we are now experiencing "Lasts" Last interim Maintenance, Last dose of........ Last Echocardiogram for a year...... I am waiting for "Last day of Treatment" It is a very very long time before that day comes but we are able to salvage enough real life during this time of treatment that it seems manageable.

We finished a dose of Methotrexate. It is such a nasty color. She dreads it for days and then suffers from it's affects for the week. It makes her very tired and grumpy. She keeps telling me that she is broken but seems to reflect a better attitude to the rest of the world.

Grandma is here for a week. That gives me the chance to work and not worry so much. It will be a good week. One of many to come.

Tuesday, April 05, 2005

Something Sweet My Cousin Wrote or Sent Me, Something I thought was worth Sharing

"What's it like to be getting older?" I was asked. The other day a young person asked me how I felt about getting older. I was taken aback, for I do not think of myself as old. Upon seeing my reaction, she was immediately embarrassed - - but I explained that it was an interesting question, and I would ponder it, and let her know.
Old age, or getting older, I decided, is a gift. I am now, probably for the first time in my life, the person I have always wanted to be.
Oh, not my body! I sometime despair over my body- the cellulite, the wrinkles, the baggy eyes, the jiggly thighs, and the sagging butt. . And often I am taken aback by the older woman who lives in my mirror, but I don't agonize over those things for long.
I would never trade my amazing friends, my wonderful life, my loving family for more shine in my hair or a flatter belly.
As I've aged, I've become more kind to myself, and less critical of myself. I've become my own friend.
I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly stone rock face that I didn't need, but looks so avante garde on my patio, in my flowers and in my home.
I am entitled to overeat, to be messy, to be extravagant. I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.
Whose business is it if I choose to write, draw or paint until 4 am, and sleep until noon?
I will dance with myself to those wonderful tunes of the 70's & 80's in my living room or in my yard as I work, and if I at the same time wish to weep over a lost love, I will.
I will walk the beach in a swim suit that is stretched over a body that has seen better days, and will dive into the waves with abandon if I choose to, despite the pitying glances from the bikini set. They, too, will get older.
I know I am sometimes forgetful. But there again, some of life is just as well forgotten and I eventually remember the important things.

Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or a lover disappoints you and leaves your life, or when a child suffers, or even when a beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect. Imperfection is truly something that needs to be loved, for we are all imperfect.
I have a motto for my home - it is getting painted on the back door this spring and it simply says " I am not an interior decorator, I am a child of the earth. If I can not walk in, kick off my shoes & feel instantly relaxed, Then this is not a home - it's just a house. If all of our friends can't do the same, raid the fridge, change the channel, - then it's not a home, just a house. So - the more imperfections it has the perfect it is. For this IS our HOME, it's not just a house!"
I am so blessed to have lived long enough to have my hair change from all its reds to more blondes, and to have my youthful laughs be forever etched into grooves on my face.
So many have never laughed, and so many have died before their hair could change colors or turn silver. I can say "no", and mean it. I can say "yes", and mean it.
As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong.
So, to answer your question, I like being older. It has set me free. I like the person I have become.
I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be.
For the first time in my life, I don't have to have a reason to do the things I want to do.
And I shall eat dessert every single day. In this life, with my family and friends and loves to come, I am truly blessed. I have figured out what it means to 'be set free'.
Love as there is no tomorrow - love of life, family, friends, lovers, children, hobbies, sunsets, sunrises, the brilliant moon, the meadows, the crazy traffic that makes you slow down and think, the people whose lives you touch even if its only for a moment because they affected you as you affected them. Love! Life is to be enjoyed. Be a child everyday, an adult when you have to. Just BE!


Saturday, April 02, 2005

Discussions of Death

We have been having some very interesting discussions. Lots of questions about what is the best way to die. What is extraordinary medical intervention. Why people of obvious faith are not willing to let love one's die. Whether there is a reason to be afraid. What to do after death. How can these conversations not happen after the news this week.

For years I have let M-E know what is to happen to me. She knows I am to be cremated and my ashes sprinkled in the Grand Canal at midnight from a Gondola. She told me that Whitney would have to go with her and make her do it because she would be afraid of getting caught.

She has been deeply disturbed by the measures that have been taken by the family of Terri Shauvio and the Pope with the feeding tubes. M-E has been horrified by all the children we see at Children's that have tubes. She does not want to have one. She hates IV's and anything where her body is assaulted.

We are going to have more discussions about this topic. We don't have to face imminent death but we all have death approaching at some time. I know that people are horrified to even have me mention that M-E could die but that is our reality. She is doing great and we are more and more hopeful each day as we travel this path. I actually have become more comfortable with the way treatment is going. I realize however, that the ongoing chemo keeps the cancer under control. My fear will come while we are in the less rigorous treatment times. Each time she has a bruise or feels tired, I will know is a return of the lukemia. No manner of hope or faith or positive thinking is going to make me less worried.

My heart just sinks and I go to a very very deep dark place when I think about us loosing this battle. I can go somewhere that is frightening and just so sad. Sad in a way that is hard to describe. I guess part of me wants to be prepared for the possibility. I have to think about how to deal with it and what I would do. By keeping that in mind, it keeps me cognizant of doing the best I can everyday as a parent and keeping connected to M-E. It keeps me doing the little extra special things that count. The movie when I am tired, the extra play date, the extra moments of snuggling and just spending time. It keep me headed to the right place and not get distracted.

I have made some changes. I don't answer the phone at night. I don't schedule anything on clinic days. I keep work at work. I check in with M-E a lot. She is sometimes hard to read. She often keeps a lot of disappointment close to her heart. She is such a trooper that we have to be careful that she is telling us what she really thinks and feels. She is having a good time here (Westin). She is very glad to be on vacation but she still feels that she is missing "Spring Break". Ordering breakfast in bed did help however. She and Sebla decided to ask me to try and open the ketchup instead of calling room service.

Friday, April 01, 2005

What Will The Man Bring for Breakfast Mommy

I am reminded of a time when M-E was 2 and 1/2. Her grandfather and died and a planned trip to Mexico did not happen. I had tickets for a concert in Portland and was going to drop Johnny and M-E at the airport and continue on. I ended up taking her to Portland with me. We checked into the Heathman. We arrived late and I did not want to take her out anywhere. She had slept all the way to Portland.

I perused the room service menu and we ordered a couple of things. We had our snack and went to bed. We woke up and were watching cartoon. M-E stretched and sleepily said " Mommy what is the man bringing for breakfast." It was one of the moments as a parent when I realized that I had created an expectation that could never be changed. It was not a bad expectation but just one of many she has learned in this life time.

I am glad that she has had more expreriance of like events. Trips, tea at the Queen Mary, the ablility to recognize Monet, laugh at The Lucy Show and see Harry Potter on the day it is released.

She had had share of disappointments in life during her short 12 years. Some big some small. She has learned that there is not a Santa, or a tooth fairy. 4th of July fireworks are not for her birthday and Friday the 13th is not her friend. Even with those diapointments, she has gathered enough knowledge to get through them and hopefully emerge on the other side with more positive things gained then lost.

Today's report goes like this. Breakfast served in bed by mom, cartoons until noon, roomservice for lunch swimming until three, napping until 6:00 dinner. I think she has learned to make the best of every situation and she is a fast learner.