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.

We are settled in for a couple of days.

We arrived about 5 pm. We checked in and before we knew it we were settled into two rooms on the 20th floor of the Westin. They did not have the room we asked for and we were up-graded. I think it was the hissy fit M-E had about being on the 13th floor.

We are ready to relax. We will of course write lots of nice cards for the people that have been so kind to us. M-E wants some swim time. She will be joined to morrow by Sebla from school. I am here to read a book or two, write a little and try and sleep a lot. We are going to have Isabel come for a swim.

We are only 5 miles from home but it is nice to pretend that we are on vacation. It helps to be here and not so into our routine. In the A.M. I am going to go and have some early coffee and then we will swim. That is all we are going to do.

Oh, I should mention we are watching Survivor. A Seattle Family attorney named Willard Smith was on. He is gone but M-E has become a Survivor Geek. She knows the people and has very strong opinions on who should be able to stay. I think it is shallow but then my sister Belle is going for a week-end to shop at malls and I have been building statues and planting trees on Second Life. I guess we all have our escapes.

Well it is time for survivor, I have to go.

Coffee Pots

My family has had a long relationship with coffee. My earliest memories of coffee revolve around my mother's aluminum percolator that sat on the stove and recycled the dark liquid for hours. I was no more than 5 or 6 when I made the connection that when mom was no longer fixing coffee, she was pregnant. She was always surprised when I told her I knew before she told me. The old aluminum percolated did get a lot of use.

Sometime in the early 70's espresso became a part of our lives. Mom had one of those aluminum, put on the stove, sometimes it blew up, kind of makers. While in the San Francisco area she became a true addict. Each and every time we went to "The City" the second stop was for espresso after the HumBow shop. The coffee exploration covered many, many countries. Dutch coffee, French Roast Coffee. The move to Switzerland cinched it all.

Mom had a love hate relationship with Switzerland. She had had her hand slapped the first day she went shopping and touched a tomato. She found ways to get back at the Swiss. She confounded the bankers by having two ATM cards. She upset the neighbors by not recylcing the yogurt jars and she found Migrows.

Migrows was a grocery store on one floor and a hardware/department store on another. They had a food court that had an automatic espresso machine. My mother would take a regular size cup, hit the espresso button twice and the cashier would assume it was one cup of regular coffee and not two shots of espresso. Neither spoke the other's language and Mom just agreed with what ever they said. I am sure they asked if it was regular or espresso and she would say "YA". It was her silent protest against the mean streak that the Swiss hid with their neat and tidy ways.

While in Switzerland she bought about a half dozen different coffee makers. When we returned to the US she had a 220 plug installed by the stove to run them. I expect the Smithsonian to appear and ask for her comprehensive collection. They come from several countries and are in many colors.

She is truly a coffee snob. She makes father drink coffee out of old Farber Ware percolators and claims he does not know the difference. She brought a little automatic espresso to my house because she did not like the coffee pot I had.

She has hated my Krupps coffee maker for a long time. It was a bit big but it seems to work for me. I could program it and the coffee in the pot was hot for a couple of hours. I purchased it after I almost burned the house down heating water for a cone. During the last visit, Mom threw the pot away. The bottom of the caraf had been warped and did not fit as it once had. I was going to buy a replacement but Mom hated the pot. I came home from work to find no coffee pot. She told me there was room in the neighbor's garbage and it had to go. Oh, well, it went.

Mom and Dad left and I had no coffee pot. I went to the Bon and found nothing and then decided I would live with one cup each morning from her little maker. I just prayed that it would not blow up. Mom fretted about her hasty action but told me I could just buck up. This from a women that consumes more coffee before noon than the entire population of a small diner.

Well the "No Coffee Pot" crisis has been resolved. My wonderful cousin delivered a new coffee maker and a pound of good coffee to the house yesterday. He showed M-E how to run it and season it and I had two wonderful cups of hot and easily brewed coffee this morning. I had a few problems with things like pouring the coffee from the caraff but I am sure there are pages of explanation in the directions. I may even get to that someday but it does not seem too important right now.

One thing I have learned during the last few months is flexibility and acceptance of the less than perfect. There is more focus on the getting it done, rather than the process. "Identify the need and solve the problem." I used to feel that we were getting our lives derailed all the time. Now I realize that the rails are just an illusion. There are just faint paths and open fields and lots of ways to travel to a destination. Mom has taught us a lot with her search for good coffee. Even when you find something that fits the bill, you can keep your options open and be ready to make a change if need be. Granted it is much easier if you have a couple of good cups of coffee under your belt.

The White Puff Ball Thing is Blooming

It is on the corner of the rockery that Ted built. Ted and Kaye. They were the official grandparents of the neighborhood. Ted had worked at a grocery store and retired when he was 65. He was in his 70's when we moved here. Kaye matched him step by step. He was an onery old fart. A stubborn German immigrant. He was opinionated and very set in his ways. He was a great neighbor. He had stories to tell and always a piece of candy for M-E from a crystal dish. We still have that dish and several other things from his home. An old secretary, a little desk, a couple of old framless oil paintings.

But better than all of that we have the White Puff Ball (WPB) that blooms for weeks during this time of the year. As I look out the window from this computer, I can see it. A constant reminder of him and the early days we were in this house. We have been here 11 years and a few months. This is the 11th time that the WPB has been a part of our spring. It makes me realize that no matter what is going on and uncertain things are right now, there is some certainty in the rhythm of the world and spring and the renewal of life. Ted and Kaye are gone but are still present in many ways. It is funny when we think of all our struggle to do something of value in this world and to make a difference prehaps the simple things make the most difference.

I look around our little neighborhood and am struck by the roses that Olga planted and grew despite total neglect. I see the stump of the completely out of control camilla from across the street that is battling back and will bloom next year. I see the two twigs we planted when we moved here and watch them reach for the sky. They are 30 feet tall and beautiful. I see the timber bamboo that Paul planted that is becoming a forest. I see the trees and circle that Michael has tended with such love and care. I see the pear tree that heard it was going if it did not bloom and I know deep in my heart that everything will be all right. Deep within us we have a renewing spirit that will not be squelched. M-E is feeling icky right now from the chemo but she is working on battling back. She is just not one to admit defeat. She has learned a lot from her neiborhood.

Rainy Saturdays

What can be better? We have so much to do outside but sometimes we just need to wait. We need to sit inside and watch the world get its much needed shower. The rain is coming down in a steady beat. Water is flowing down the street in an orderly way. M-E is asleep and needs some rest. She is feeling so much better right now. I don't want to even mention to her the she has to have IV Methotrexate Monday. She will not be pleased. She might tolerate it better this time but then they give it to her until she had a bad reaction. We shall see.

Easter is tomorrow. I am pleased to report that six dozen eggs have been prepared. They are ready for the Easter Bunny to hide. I have to dig out the baskets and get ready. There are going to be some fun things in M-E's basket this year. Some Venice things and some things she has been asking for that are not very Eastery but then I think the Easter Bunny can gow beyond Peeps.

I think Easter is my favorite time of year in the Church. I understand why Mel G. made his movie after spending a few years observing the rituals of the Catholic Church.They are very different than the ones of the Protestant. There are three very important services.

The first is Maude Thursday. This is the service of the Last Supper. The washing of the feet is done. I have found that it is very easy to wash someone elses feet but very difficult to have them washed. It is the old "it is better to give than receive". I certainly have had a hard time with the receiving part. I am still having a hard time. I feel uncomfortable each time someone does something nice for me. On the flip side, I am very upset when someone does not let me do something for them. Go figure.

Good Friday is very dark. The Church is dark. The candles are not there. It is the only day in the whole year that there is no Mass. Simply put God is dead. No ifs, ands or buts about it. The church is dark until Saturday night when the Vigil takes place.

The Vigil is big. It is probably the most important service of the year. The vigil, the waiting by the tomb, the dark sadness of the passing of a dear friend and companion. The church is absolutly dark. The congregation gathers outside and a fire is lit. Candles are lit and carried into the church. ( Catholic Churches are made of stone for a reason.) Then they are blown out and the telling of the story from the Old Testament is read. From Genesis, to the Flood, to Isaiah and on to the birth, education and ministry and crucifixion of Jesus. Then the lights come on and the music starts and the celebration of the resurrections begins. The baptisms of new members, their first communion etc. It takes about two or three hours and ends around midnight.

Easter Sunday is sort of an after thought. I asked about the lack of Sunrise Services and Father Craig had a great answer. Oh, Sally, he is already gone. The deed is done.

I love the symbolism of the dark waiting. That feeling of being alone and then knowing the light will come. Iguess "the light at the end of the tunnel" is a very old set of symbols.

What came first the dark or the light? I think we can all agree the dark was a very important part of the process. Before the Big Bang it must have been very dark. The tulips have to be planted in the dark ground before they can great the world with all their color. The trees are quiet for a long long time before they burst forth with flowers and leaves and life.

We are still waiting for the return of the light but we know that is is coming and we are not waiting alone in the dark.

It is a Battle Scar

Mom, can I wear free dress today?

Yes Sweetie. Are you going to wear one of your new spring outfits that Aunt Amy bought you and then shamed me into keeping even though she bought two?

Yes, I am going to wear the green one. I don't care if my port scar shows. It is a battle scar and I am winning the battle.

Who told you about battle scars?

No one. I have heard about them before and this is one of mine.

There are moments like yesterday when I am just overwhelmed by Mary-Elizabeth. She is such an old wise soul. She is such a surprise to me every day. There is a part of her that is not of this world. She has always been that way. I have one very vivid memory of being in the old condo and she was dressed in a pink outfit. She was laying (or is it lying) on the bed and was about 6 months old. She was looking at me with the very serious furrowed brow and she began to talk. She jammered for about twenty minutes just as if we were having a conversation. She was animated and expressive and it was then that I realized that we were the ones that were not able to communicate with her. She had lots to say and some day she would have to switch to our language and and try to make us understand.

She has been so very calm and very matter of fact about her lukemmia over the last few months. She has had an occasional melt down but then she is 12 almost 13. She is calm and matter of fact. Only on occasion does she complain and then only about weird little things. No complaints about going to the hospital. No complaints about daily shots. No complaints about side affects. She just takes them in stride.

There are signs every now and then. I know that she misses her hair. I know she desperately misses school and her friends. I know that she misses her dog more than she can say. I know that she misses being able to go places like movies and malls and favorite restaurants. I know that she misses being able to leave Seattle.

What truly saddens me is that I also know the "Battle Scars" are not just on the surface. I am sure that we will have to watch for infection and complications for a very, very long time.

On a lighter note, Isabel and M-E dyed Easter Eggs yesterday. Isabel was so excited about how that all worked. She was very upset each time she found no egg in the dye. She was very pleased when she took an egg home for her Popi. M-E announced that she was the Easter Bunny this year. I hope we can find all the eggs.

The New Houses are Almost Done and maybe we are too

Last night I let out a gasp. There were lights on in the house across the street. It had a very warm and welcoming feel to it. The houses are almost done. They are locked now and even though I know where the keys are, I have decided maybe they don't want us inside. We have seen lots of activity. Painters, electricians, cupboards, appliances, floor guys. They are coming along very nicely. What I like about them is that they are different but yet the same. The right one is a tan color with round rocks on the front. The left one has a dark brown paint with squareish rocks and some extra gingerbread stuff on it. Both are about to disappear behind the cover of our trees.

It has been very interesting to watch the building process. The digging, the foundation, the building, and the endless finishing. These houses have been a metaphor for M-E's journey. I guess we are still in the building phase. The finishing will take a year and a half.

This week has been very interesting. We are headed back to normal. It is a difficult concept to understand but one we are trying to remember. She is taking showers. She is going to school everyday. She is doing homework and studying for her tests. We shall see how this goes. We will have to go through a period of ajustment.

M-E is scheduled for another round of Interim Maintence. We go into that phase very healthy. We go with the knowledge that at the most she has 5 more doses of Methotrexate infront of her. We go knowing that it is do able and that it will be over soon. We go with more energy and strength and with spring letting us know we are headed to a good time and are almost there. Those are all big improvements over the last time of low counts and fevers and high temperatures and dehydration and........

It should be a good Easter. It helps to know that once the dark time is over, the light is with us forever.

First Day of Spring

We head into the light. What a a nice thought. We have been through the darkest time. I love spring. This is a different spring. All of Seattle is a bit freaked with all the spring flowers making their appearance with little or no effort and all at the same time. I will take it personally and assume that the profusion of flowers so early was for my benefit. It is to remind me that hope is so much more important than worry. I think the flowers know they better make their appearance now while the world still has moisture to spare. I should take some pictures because it could be a long hot summer.

M-E did not need a transfusion yesterday. Her numbers are high enough to let her out of the house and she is going to school today. She had a bit of a hard time last night. Too much excitement. Too late in the day to get to bed, too_____ too____ , just fill in the blank. Every now and then she just falls apart. It takes me by surprise every time it happens because she is has been such a trooper. She goes to the hospital without complaint. She lets them poke and prod and takes it all. I guess she is entitled to a melt down or two on occation. Sometimes the disappointment in life is just too much for her.

Amy came from Eugene for the week. She is doing errands and taking M-E to and from school. I am working and that feels good. Mom left her with a number of things to do. Suffice it to say, the socks are matched.

The News

I hate the news sometimes. It is so bleak and I tend to get discouraged about what is going on in the world. I noticed my relationship with the news changed when I had Mary-Elizabeth. I took it too seriously and was very upset about stories that related to children. I was upset when the government did things that did not help children but set them up for failure. It has been very difficult recently with the Terry Shibow (sp) case. It just baffles me on one hand but also I think I understand.

I listen to the debate and weight the pros and cons of the case. I worry about having to make the same choice. It just raises so so many questions about medicine and God and intervention and faith. I wonder why people that espouse faith don't act on it. Do we judge the parents because they are not ready to let their child die? Is Terry really there? When do you make that decision? How do you make that decision? Should we ever take extraordinary means to bring about a different outcome? Should we submit a child to all this process? When is enough, enough? Do we take those efforts because of our needs or our children's. Do they need to keep living because we cannot stand to have them leave before we do? Does this hesitancy mean we really don't believe that there is more to this life than we can see?

I recall the words of my Civil Procedure teacher, THERE ARE NO ANSWERS, JUST ARGUMENTS!

Then I heard about Scott Peterson this week and just shook my head. What if we took the money California will spend on appeals and spent it on medical research or Ronald McDonald Houses or provided much needed medicine to the elderly or bought boots for soldiers in Iraq? Just a thought.

She had the look.......

That haggard, I don't think I can take another moment of this, look. I see it a lot. I see the pain in the eyes of the mothers that are on this path with me. We sometimes are like the living dead. We take the next steps and we just keep walking. We have nothing left to give when so much is still expected and needed We have no more energy with so many that depend on our help. It is such a struggle. I was reminded today of how much help my friends have been.

I ran into Jenna's mom for the third time this week. We met when Jenna had just been diagnosed. She is 4 years old and an identical twin. She was in clinic for her first post-chemo bone marrow. Her mom was in good spirits but you could tell. It brought back all of those memories of the first few weeks. The time you are trying to understand why God had chosen your family for this struggle. You still have a bit of energy during the first month. Your energy begins to ebb away no matter what you do. Sleep is fitful, waking time is terror. It is so hard. She has a husband and 3 other children.

Today she was in tears. She felt like her kids were not getting the right type of attention, she felt her house was messy. She felt her husband was not doing what he could to help. She felt the weight of the world on her shoulders. We talked for a long time. I made a few suggestions and told her that one day she to would wake up and know that she had passed her 7 month mark. That this is not an endless tunnel and more importantly, I told her she had to make someone else do her laundry and change all the bed for all the other family members. ( Hints from Grandma Mary). I gave her my name and number and told her to call.

She asked if I kept a journal and I told her I did all of this on the computer. I told her that I had seen some very sad things over the months. I told her about Kelsey and how she had died but also about all the others I saw that were making it. I mostly just listened.

T0day while we waited for the blood to arrive, I let myself look at the next couple of months. Cake, we have done it before. We have so much more knowledge than we did the first time we did Interim Maintenance. I know what to expect and know I will be surprised. But I hope......This is the last time we have to do any of it.

The "ONLY ONE MORES"

Only one more Interim Maintenance, Only one more Delayed Intensification, only one more dose of Cytoxon, only one more round of Ara-C, only one more....................... It is a count down, but it is a count down to the end of the icky stuff. She took her last dose of Thioguinine for this round. A lovely old poison that would have made Shakespeare proud. It comes in little doses that are given at night. Evidenlty our bodies rebuild at night. Cells are produced and replaced very rapidly. So, since we can not have any of that going on, we give her just a little dose of poison that stops all of that nonsense. We love Chemo Therapy. It is such a happy happy thing.

We have now been through it all at least once. One more set to go and then on to the Maintenance. I do not have the ability to think about that yet. I have to take this process one step at the time and stay viligent. I have to not let things slide or think we have it all down. I was very reluctant to take her to the hospital last week but know I have to go when she has a fever. An infection can put a kid in the ICU so fast yours head would spin. The doctor in the ER was very surprised to know that we had kept out of the ICU. There is a part of me that wants this to be done and not have to worry. I am so willing to hop on the "She is Fine" bandwagon. I love that she is better and want to test the limits a bit.

We are planning a trip to Venice in October. It will be low key. I am planning to go to every church on the island and light a candle. (The reason you light a candle is that it keeps the prayer going after you leave. )I love that thought. We need to leave lots of prayers at this point. I had better check on how many churches there are. It should be a good journey.

Month 7

Seven months, seven days in a week, seven is an important mile stone. In Chemo
world it is just a day that passed with no acknowledgement but a day we all knew had that special number. Number 13. I can say that time is now passing more rapidly. I think the further down the road we travel, the passage of dates does not seem to have the same impact. You know they are there but the focus is not on the day you started but the day we will finish. We can see the progress and now focus on the future and do not dwell on the past.

Lori leaves today and Mom and Dad and Sadie will be here soon to visit. M-E is better but the counts will be in the toilet. She is recovering and is a bit snotty. I love when she gets that way.

Lori came for a few days. She has made two trips here since M-E was diagnosed and has been a great help. She arrives and takes M-E to the hospital and then makes sure she gets everything done. She is very organized and keeps us on the straight and narrow. We love Lori. She has a quiet determined manner and a sense of humor that does not quit. She is one of those friends that you know is always there and when we see each other there is the easy resumption of our relationship.

Lori and I have known each other for more than 20 years. We met before law school and we went through a lot together. Over the years we have been able to spend time with each other. Mary-E was in her wedding ten years ago. Ten years, see time does fly. Lori and Doug have come over to Seattle over the years for games. She came for my 50th birthday and for the Tulip Festival. She is always ready with a word of encouragement or a good joke.

I count my blessings everyday for friends like Lori and Ruth and Margaret and Maggie and Beverly and Alison and the school and the people in the office. I count my blessing for the great staff that takes care of us at the hospital and all the people that have brought us a meal, given me a hug or asked how I am doing. Support comes in so many forms.

We are getting better at taking help. I did not realized how hard it would be for me to accept help. We are so programmed to give, I guess we need to have lessons in receiving. There is so much talk about receiving grace from God. In practice it is a much more difficult thing to do. I guess the grace from these last few months comes from all the people that have reached out and streached out and given to us. So, so many. If this were the Oscars the band would be playing.

IF........

I love this poem.....

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait, and not be tired by waiting,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk to wise;

If you can dream---- and not make dreams your master
If you can think---and not make thoughts your aim;
If you can meet with Triumph and disaster
And treat those two impostors just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the thing you gave your life to broken,
And stoop and build'em up with worn-out tools;

If you can make one heap of all your winings
And risk it on one turn of pitch-and toss,
And lose, and start again at your beginnings
And never breathe a word about your oss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virture,
Or walk with Kings---not lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
with sixty seconds' worth of distance run---
Yours is the Earth and everything that's in it,
And---which is more--you'll be a Man, my son!
(And---which is more -- you'll be a Hem/Onc Mom.)

by Rudyard Kipling

I love this poem. My dad would read lots of poems to me and this was one of them. He read me things like Gungadin and the Charge of the Light brigade. I began to understand how important it was to read poems out loud when IAC teaching. I loves the cadence and the rhyme and predictability of the verse. I love the words and the messages and the great endings. Poet's seems to be able to wrap it up with a good point.

This seems to say it all at this point, especially the part about filling a minute with sixty second's effort. We have been many days where we need to give that kind of effort. But it is not days of effort, it is moments of great intense effort, concentration and sacrifice. Our life is sort of like a baseball game. It takes a long time to play out. Lots of waiting, lots of standing around and then the big play comes and everything begins to move and before you know it, it is over.

If....... it can be a good thing or a bad thing. It can be the start of a positive thought or action. If I do the my laundry now, I will not run out of clean underwear: or the flip side: If I had only done my laundry I would not be out of underwear. I am going for the former and not the latter.

Winter Picnics

In my line of work we deal with lots of issues around perception. We live in a world where your senses tell us one thing and many time our hearts and soul tell us another. Unfortunately, we often don't trust our deepest instincts. I think our perceptions are also clouded by our most basic view of the world. Is the world a "half full" place or a "half empty". It makes a big difference with how your life goes, depending on that very perception.

I was raised by two "half full" parents. No matter what there was something positive that came from the situation. They tell a story about stopping on the side of the road to eat on our way somewhere. No rest stops, no McDonald's, just a wide place where the car could be safe. We stopped and Mom made tuna fish sandwiches. (Remember when things like Mayo out of the fridge was not cause of alarm?) It was cold and snowy. I am reported to have been delighted and announced that I loved Winter Picnics.

These last few months have been quite the Winter Picnic. I confess I have been less enthusiastic about the stop. The problem with this picnic is that it seems to be over staying it's welcome. I want to go to the next spot in the road but need to rest here for a bit longer. It is very hard given that everything else seems to be moving forward with great speed. I perceive that the world is passing us by right now. I would like to step back on the treadmill and don't know how. I know that our old lives have gone and that we will have to create new ones when we are done with this stop. I see the hustle and the bustle of lives and know we might never go back to that way of living. I wonder if we all fill our lives with that frenetic activity because we don't know how to sit at the side of the road and enjoy a simple sandwich.

To be fair, we have replaced one kind of activity for another. We schedule appointments with a dozen doctors and clinics. We spend time in the clinic, at the emergency room, waiting for prescriptions to be filled, number to go up and then waiting for them to go down. The only difference is most of the time we don't get to know when the next appointment will be. I guess you could say we spend a lot of time enjoying the crisp snow, the sight of a bird flicking through the woods and the warm winter sun.

Our Winter Picnic continues.

You always get your come-up-ance

See, I was getting too secure in M-E's newly discovered health. I was thinking we had it licked. She was eating and wanting to go and do some things. She was doing homework and being a bit of a brat. She spent an evening with the Verhoffs and was wanting more time. She had been to school and wanted to venture out to the store and the like. We were even talking about Bloomsday in a positive way.

The port is healing and she is feeling like she has more ability to deal with life. Then........... the fever. The trip to the hospital. The accessing of the port the first time since the surgeon's did not. The frustration with the ER, the returning fear. The little voice saying......" No, it is not over. You thought it was getting better, don't ever assume....." It just happens. One extra breath and one less dousing of Purell and then back onto the vigilant treadmill.

Is there a support group titled "Waiting for the other shoe to drop"? Oh, well, it is time to go to work so I can go to the hospital so I can find out how things are and what her number are. That is our life. I will plan something fun tomorrow, or maybe next year.

Oh, do you think it is bad when your mom won't match your socks? She seems to think that since I am over 50, I should know how? What a concept.

Things feel Different for the first time in a long time.

M-E is sleeping. She is on her back and has two incisions on her chest. One for the port and one at the base of her neck where they had to to something. I am still not sure how it all works but I certainly don't want to know. Yesterday went something like this.

Up at 4:30 a.m. (This teaches you to ask to be first on the schedule). At the hospital by 5:45. (Tulleys is not even open) Check-in. Try not to worry that the admitting clerk is snoring. Wait, wait, and finally at 7:00 a nurse appears and the long process begins. See the nurse, see the doctors and then off she goes. She walked like a trooper with the Swedish anesthesiologist.

Two hours later she was back. In pain and very grumpy. Things never go the way you think they will. They had given her an IVand it had to come out. That hurt. They had not given her all of her chemo and so the PICC was still in. It had to come out after the Chemo. Thank God I had not been there for the removal of the first one. Just for those of you that are weak of heart, the catheter was about a foot long. Yuck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We did were able to arrive home with little or no effort. She went to bed. She is very stiff and not able to move without hurting. She was able to watch some T.V. and took some pain meds in the middle of the night. She seems to be doing better this morning.

It took us more than 6 months to have the port go in. She was so ready for it now. She realized she was going to have two years of IV's for her maintenance chemo. She was very ready for this step.

We seem to have turned a corner. I guess we have not had to be in the hospital because she has been sick for a long time. No fevers, no trips to the emergency room in the icy rain. Luquemia is feeling like a normal part of our life. I guess we can ajust to anything.

We can see that the end of this intense time is coming. I am at a place I can help a new family understand the process and help them through the very confusing first few weeks. I seem to be able to breath more. We are on a path and we have to go the entire way. It is a path not often taken but it is our path and one that we have to travel. We can not step off. It is what it is. Maybe instead of trying to stand up in the river, we are just letting it carry us on. Less unknowns a this time. I am still very aware of the lions and tigers and bears that are lurking but then I have to be. They will always be there.

We are going to Venice for M-E's Make-A-Wish. We are going to take one side trip to Pisa. We are going in October of this year. My mom is a bit worried about the trip but I think we have to do it at that time. Less people traveling. M-E should have some of her strength back. I don't want to wait too long. I want to go while we can. We may be able to go another time but I would hate to miss the chance. We are very into taking advantage of the good times. I know the lions and tigers and bears are going to go with us and we always have to keep any eye on them but it should be easy to do so while sipping cappacinos in the the late fall Venetian sun.

We Survived the Hospital

Well we made it out of the hospital. M-E had her cytoxon and ara-c. She was supposed to have surgery on Wednesday. I started to wonder about the entire surgery thing when no one came to talk with us. I started asking questions but found that she was not on the schedule. I have discovered that the Surgeons and the Hem/Onc people don't have what one would call a "good working relationship". I think there are some surgeon egos that get in the way.

Hem/Onc doctors are a rare breed. They have their priorities straight. They are very worried and attached to their patients. They sort of show up at the beginning of the preparation of Thanksgiving dinner, in the early morning and help chop the veggies for the dressing. They become members of the family. They stick around to put the good dishes away. The Surgeons are more the drive through McDonald's and eat in the car type. In and out. Oh, well there are some relatives you don't want to stay for dessert.

We are scheduled for a drive through tomorrow. One day at a time. One procedure at a time. One blood test at a time.

I realized that this time in the hospital was very different. We having settled into the routine. We know the staff, we have nurses that give us hugs and do special things for us. We have not real anxiety about the process. We understand how to go there and not eat in the cafeteria. We know when to ask questions and when we just need to wait. It has become routine. In some ways it is good. In other's it is very scary that we can be that casual about it. I guess that is what 6 months of treatment will do for you.

Early Morning

It is quiet. The new dishwasher is running and I am having a cup of coffee. A little tense but ready for what we have to do today.

This is nasty overnight chemo time. We have to go to the clinic and have a blood draw about noon. Then we wait for an hour while they decide whether or not we are going to be admitted. Her bone marrow has been doing a great job and her numbers are good. We then go to the floor and hope for good roommates. We get settled in and then wait for the process to start. Lots of fluids, 4 or 5 bags. They plump her up like a balloon. Then enough zofron to break a large third world country. Then they give her the Cytoxon and Ara-C and when that is finished she is given a big dose of Lasix. She stands by the bathroom door for about an hour and half and pees like a race horse. Then we go to sleep. A fitful sleep because we know that when she wakes up she will be an unhappy child. Oh, well, one more after tonight.

She was very very sick after the last round of this stuff. No one will listen to me about the reason. Kerry lost and my brilliant daughter puked for days. At this point in my life, I believe in lots of signs. I hope the much needed rain of today is not made up of tears of pain and anguish but tears that relieve and heal and nuture. We need them.

Things seem to have just faded away

I am looking out the window and we have some fog this morning. When I first sat down a the computer things were distinct. It was dark and I could make out all the houses and could determine who was home in the neighborhood. (You can tell a lot about a household by the cars that are present or more importantly, not present.) While in the dark, there are hints of light that help you discern the world.

When I looked up just now, everything was gone. The fog isn't thicker, it is just interacting with the light to create a curtain. It is the dusky time when everything is the same color. The time we can not distinguish the real objects that are very real but illusive. It is different than being "in the fog" and a bit more disconcerting. When the fog is thick and soupy you have no chance of seeing anything. You go slowly and you creep down the path you are traveling. When you find yourself in a monochromatic world, slow does not help. It is more paralyzing to be in a place with no distinctive boundaries.

We have been spending lots of time on a monochromatic planet. Lots of sameness with that knowing that things could easily transition into horrible darkness or the light could finally shine through. I know that we are always looking for those boundaries and trying to make distinctions to make our world have some predictability. Each and every day that we are in contact with someone that has been through the process, we try to make our child's case different. We try and see the good similarities and if there are problems we try and distance our case from theirs. There are people on our planet but they are in the same fog.

I realize that I have been in the fog for a long time. All the edges of my former world have been erased. We are sitting on this very small planet and not sure how to get off or if we are still in the same universe. Things have contracted to this most essential sphere. I am not sure if we know how to get off the planet or if we are allowed to take moments away from our efforts on our new planet. I see other worlds as we travel on our orbit. I see families getting out the door to school as if that is normal activity, or Mom's shopping at the store, or people planning spring break or trips to Portland, camping or even to North Bend. I listen to people that talk about dinner parties and spa appointments and going to the theater. They plans things and have a certainty they will be able to do what they have planned. I think that some people are afraid to share with us the world. I think they are afraid to tell us they are going on an exotic adventure. I think they feel we will be jealous in some way. We love to know that our fog has not engulfed everyone. We need to be reminded there will be life beyond this current reality

On this planet there will be no planning allowed. It is a planet that time has no real meaning. Time expands and contracts with ease and no real predictability. While we sit in the fog, we are not allowed to see beyond the edges. We have a sense that there are things beyond the barrier but know that we will fall off our current perch if we expend too much energy in tying to reach that place.

We have to do t his transit. There are no ways to make the fog lift for the time being. We have to wait to see if we will be seeing light or whether or not the darkness will give us our boundaries. We are given hints on occasion but then we are often given reminders that we must try and keep our balance while we are here in this place of cloudy edges.

BEWARE OF THE FULL MOON

We had a productive day at the hospital. M-E had her Nero psych Evaluation. It will let us know where we are and what has changed. I was asked to fill out an evaluation of M-E and I became profoundly sad. As I answered the questions, I began to truly realize how different M-E is now from when we started. While she has and continues to be upbeat, we are living with another person. A person that has lost her sense of humor and really needs no more disappointments in her life. I guess the best way to say it is she has lost her flexibility. She is acting like a desperate person that is trying to hang on to the cloud that was her life.

She has always been an easy kid and the kid is gone for now. She has lost her trust of the world and her own body has betrayed her. She sees things so differently. It is wearing for her. There is so much disappointment in her world right now.

I think the best analogy can be taken from something my sister talks about. She always talks about our "tool boxes". Our parents give us the best tools they have to share but sometimes we have to find tools in other places, spirituality, healthy loving relationships, therapy, friendships, Oprah or Dr. Phil. Right now we are at the bottom of the box and need to find some new tools. I know we will find our way through this but I really could use a trip to the Hem/Onc Home Depot.

We are all a bit upset. We have had too much exposure to the sun and the moon. I think those of us from Seattle are a bit on edge. We have had weeks of clear weather and now it is down right warm. We have been able to see the full moon come into's full glory and we don't know what to do. We are waiting for God to review the world map and say "opps, the rain was not suppose do be in California!!!!" It is that "waiting for the other shoe to drop" syndrome.

I will enjoy each and every moment I see the sky in it's blue spender and hear the birds and watch the moon rise and Orion ride across the sky. I am looking into my tool box right now to see if I can find the tools to keep worry away. Wish me luck.

Beware of a House jealousy

I should have known better. I should have known not to make calls to find a new transmission for the car at Thanksgiving. I should have known that it would be very bad to talk about buying a new computer. I should have known to make calls from the house about getting the trim painted this year. I should have known that if I made those mistakes, I would have to pay. The house will only put up with so much. When it feels ignored, it makes a sacrifice to get your attention. It needs to be nurtured. It is not enough if you clean it and heat it, it needs and wants new toys. New electronics are not good enough. They can be moved. It wants stuff that is anchored in and pretty and things people will talk about. It wants shiny new and improved toys. Hence, the dishwasher was sacrificed.

It was hauled away to the "Recyle station in the North End." I loved that dishwasher. I had searched the world for it. It served us well. It was too young to die. It has been replaced. Shh.... I have tried not to upset the Fridge and the Stove. I was sensitive to their needs to still feel wanted and did not bring home an obviously new model. No fancy titanium finish. Just plain white. Not that plain white is bad or anything!!!! It is just fine for all of our purposes. ( I am going to look and see if I can get a new panel. I saw on the DVD that came with the washer that they can come in fun colors. ) I better not worry about that for now. The washer and dryer might be listening.

We were Having a Quiet Day

Another day in the sun. We are taking the day off. I have to have days that I don't deal with work in any real way. It was supposed to be quiet but M-E seemed a little down.

She was looking forward to some time with Whitney but then Ms. W went to spend time with her Aunt. M-E understood but she loves time with Whitney. Whitney is such a breath of fresh air. She is so much in her own world and it is such a happy place. It is a place that Mary-Elizabeth likes to spend time. Whitney was so disappointed in me because I don't know any commercial jingles. I see great things in the future for Ms. W. She can remember anything if it is in song form.

M-E finally agreed to go to a movie. She was not able to get the computer to work so she came down stairs and assigned the task to me. I went upstairs and tried to do the same. Just as I was beginning to fiddle with the computer, I heard a noise and looked over at the dishwasher. Black smoke was coming out of the vent. I freaked. I opened the door, found no smoke, but it kept coming. I called the fire department and they told me to turn off the power. I was able to do that after awhile. I think it might be time to rewire or at least re-label to breaker box. The fire truck came. Three really cute guys and a scary but strong women also came along.

Our next stop. The Dish Washer store. I hate to buy things like appliances. They are not as much fun as Christmas Houses or fabric or flowers or ................... Oh, well.

It was my lesson for the day. God does take care of us. If I had not been upstairs when it started it would have been very very bad.

Bad Hair Days

Well, when they talk about two sides of the coin, they are right. M-E's hair has been gone for while. She had her head shaved in November. She has a wig that she wore but soon decided that bald was beautiful. She mourned the loss of her hair. She whined when it started to grow back because it hurt and then loved it again because it was so soft. Lucy (our cat) gets very jealous because I pet M-E's head all the time.

The hair is definitely back. It is about 1/2 long. It is an unremarkable color. Sort of a dull dark brownish grey. It seems to be straight and is still very very soft.

It is supposed to leave again soon. She has had three doses of Doxieyrubinson. The Rubison family evidently does not approve of hair. They banish it from all possible places on the human body. The Rubison's are a scary family. The medication is bright red. Deep and pure in color. It looks like cough medicine. I don't think things we put in children's veins should be colored. Evidently there is a medicine called Blue Thunder that is bright blue. Opps, back to the point of this entry.

Mary-Elizabeth woke up today with hair sticking up!!!! Her first bad hair day! We are so excited. Bad hair days. The other side of the coin.

Dexemethasone Hell

Steroids. There are people that take them willingly and illegally. I wonder about those people. I think we should not be focusing on person taking them but rather the people they have to live with.

Oh, My God. I am so amazed at what 10 milligrams of the stuff does to my daughter. The change happens almost overnight. The tears. The anger. The constant eating. On Tuesday we went to Costco after our appointment and had a hot dog and bought a huge box of cereal. It is gone. The milk is gone. She is not just eating cereal.

The mood swings are the worst. This brings out the deep deep blues in a person. She can cry at the drop of a pin or the appearance of an ice bag. My sister suggested that she be given Olazanapine. I looked it up. It is a powerful anti-psychotic drug. Everyone thinks that the ball players are hitting the balls out of the stadiums because of their added muscle mass. They are doing so because of their anger at things like commercials on the television or the fact that the milk is not in the right spot in the fridge or because someone failed to wash the right shirt or the sun is out or it is too cold out of the sun or the restaurant is not open or it is Wednesday and not Thursday.

Instead of being upset at the players, we need to start groups to help the families and other associates deal with the issues.

On more pleasant fronts, things are moving along. The houses across the street are getting better every day. I have been able to do a couple of things around the house like take the recycling to the curb. It might not sound like much but it is the little things that seems to make a real difference. I was able to file my taxes and I hope to plant some flowers this week-end. Mom bought us some beautiful primroses that need to go into the pots. The daffodil's are blooming and the sun is shining. M-E has not had to go to the hospital for a fever for awhile. Life is good.

Weird Week

Weird. I don't know how to describe it. Weird. I feel like I have done a lot but then I wonder. I need to find some balance. I don't ever seem to get it quite right. I have needed to spend lots of time with M-E and have been able to do so because we are sort of in a holding pattern at work. Work has been less than fruitful but I am ready to whip out a bunch of projects. I am waiting for the result from our never ending mediation and that will create lots of work to do during a very short period of time. I guess it feels like limbo.

It is sort of like the weather we are having right now. It is very very cold at night but the days are warm while in the sun. We are waiting for M-E's numbers to drop and we are on guard and waiting for the fever to return. It is sort of knowing that the first wave is the beginning.

I guess I am realizing that we have a new normal. It is just very different than our old life. We have settled into this one. It is our life. It will be for a long time. It is time to work on making this life doable. I think that requires that I let go a bit. I am going to schedule a week-end away. I am just going to do it. Johnny and Ana can handle M-E if she gets sick. What a novel idea. I have to work on that. I want to quilt with my friends for 48 hours. I want to be waited on and not have to cook. I will get on that right now.

See, good things come from weird weeks.

They are Running a Marathon!!!!

http://www.teamintraining.org/personalpages/page.adp?event_id=549263&user_id=242394 http://www.teamintraining.org/participant/serion-242394

These are the cites for two different groups.

It is amazing what people come into our lives. Someone that works with Whitney's Mom and her friend are training and running a Marathon with M-E as their honoree. She is pretty amazed at what they are doing. They are training and raising money for the Lewkquemia Society. One race is next month in California and the other is in May in Vancouver. It is pretty exciting. The link takes you directly to their site. I wish we could go and see them race. I am sure there will be lots of pictures on the web when the race is over.

Vacuums and Washing Machines

I have not gone over the edge. I love my vacuum. I think people should come here and bond with it. I have been a long time vacuum hater. I would do almost anything to avoid it's use as a child in my parent's home. You see, I was raised with a family that had lots of shag carpet, brothers and a father that loaded shells in the living room. The beebee's would fall on the carpet. The vacuum would suck them up and make an ungodly noise as they were removed from the carpet. Then someone would yell from some place" WATCH WHAT YOU ARE DOING!!!!!!!!!!" as the beebee was banging around in the hollow metal of the vacuum. Now mind you, no one yelled at my brothers or father as they loaded shot gun shells on the shag carpet, in the living room......

So I soon became adverse to the world of vacuuming. I hate it. It made me sneeze, it was noisy, the shag carpet always had secret noisy stuff hiding in wait for me. I have never been without a vacuum but do prefer when someone else uses it on my behalf.

I did fall in love with the Miela when Mom sent it to me about 7 years ago. More accurately, I may have fallen in love with the clever German Packaging. A box arrived and when I went to carry it home, I put my hand through the holes intended for transporting the box and put my hand around the vacuum handle. The box did not break, it was easy to carry and I was in love. Now mind you, I was only in love with the packaging and ease with with which I was able to carry the item. I still hate to vacuum.

Some snide comment was made about the washing machine. I love my washing machine and dryer. I just can not seem to fold and put away the cloths that emerge. That is another issue.

M-E is alseep. The affects of the Steriods from last week have finally worn off. Of course she starts them again today. We were at the clinic yesterday. She has to have a blood transfusion this week and a dressing change. Her ANC went from 6648 to 1078 in seven days. Here we go. Our rest time is over. We are getting better at handling things, I hope. This is a long journey but we are making progress.

We are at the end of Month 6

Valentine's Day. Month 6 is over. Hopefully in two years you will be meeting with us at Toyota's for a WE ARE DONE celebration. (M-E's favorite Sushi place.)

Six months. I find that we have less difficulty with this date due to a couple of weeks that M-E is feeling better. She is eating and has a bit of energy. Maybe her recent anxiety is from the fact that she does feel better. She has time for anxiety. I will take what is dealt to us. Good Bad, it is what it is.

Exciting news. My vacuum is not dead. It just needed a new filter. See I have a life. I have exciting things going on. I am not obsessed with shots and pills and treatment schedules. I have time for fun and creativity. I am just learning to enjoy the simple things in life, like a working vacuum.

Happy Valentine's day.

Lucy is Good For Mary-Elizabeth and Whitney

Whitney and M-E are watching old Lucy DVD's. We have some of the shows and have ordered all the old ones from Netflix. The girls have just laughed and laughed and laughed. That true guffaw that originates deep in your sole. It is nice to hear. Whitney and M-E have not had enough time together and these free times are so necessary.

I miss relaxed time with my friends. I have great friends and I am missing important things in their lives. I have been so stressed, they are beginning to withhold information from me. I just hate that. I understand but it doesn't make it any easier. This disease is not just affecting M-E, it is affecting so many people. I hate it but I guess is part of our new reality.

I have to try and keep quilting and keep working on my never ending projects. I have to try and keep sane and try to figure out how to manage all of this better. Most times when I am not as overwhelmed I am just pulling a Scarlett. "Tomorrow is another day". Having Mom here for a week helped. It is a mini vacation for me. Laundry is done. Some stuff is recycled. The fridge is cleaned out. It gave me a bit of a break.

I have a better idea about the next few weeks and I am through the most difficult part of my big case. All and all things are good.

The houses across the street are coming along. Siding. Electricity. Plumbing, windows and lots of people going through them. They are cute and will be $300,000. Three bedrooms, 2.5 baths, a fire place and a deck looking at my yard. I wonder if the builder will be giving me some money to spruce up my yard. I think that sounds like a good idea.......

Rain, But that is a good thing.

We have had sunny sunny days. Hot sun, cool air. It is a great combination. I am looking out on a wet street for the first time in days. We have not had a typical winter. Very little pesipitation of any kind.

I love those snow days. Those days when the world stops. As a kid it took lots of snow, more like several feet of snow and good strong winds to ground us. In Seatte, the words "Snow in the forecast" bring the world to a halt. You cannot get near a store, the tire places are jammed and the kids negotiate for a later bed time. This town comes to a screeching halt.

For those of us that were raised with real snow it is a funny thing to watch.

When I first moved here, I scoffed at the reaction. I could not believe that any amount of snow under 2 feet could keep me inside, afraid for my life. I would venture out on foot or by bus or even use my car. I knew how to drive. I knew how to stop. I had snow tires and chains and years and years of experience. No problem. What I did not understand was the I was not alone on the roads. I was surrounded by people that had little or no experience with driving on anything more slippery than rain.

Like with many things, I was very very wrong. I headed out on the bus and soon found that the bus people forgot to put on the chains. They did chain up the buses but only after they were stuck. As we headed down the hill, I saw no less than 6 buses stacked on Pine Street waiting for the chain people. I figured it would be all over and I could get back home. Thank God I was younger then. I had to hike home. Oh, well.

Then it froze. The snow became lots and lots of Ice. It was ugly. Since there were no plows, the ice was terrible. It was possible to still get around but it took some thought. One of the important things to do when the ice is on the hills is to avoid the hills. Evidently that is not taught in basic drivers education in this part of the world. I lived on a hill and marveled at the number of people that thought the way to handle a steep and ice covered surface is to start at the bottom and try to power up the hill. Spinning wheels and no traction are not evidence of lack of ability to climb a hill to the novice snow driver. I marveled at the number of people that tried and tried and could not be deterred. There was one old beat up old Ford Taurus that tried and tried and then slipped and hit a car parked on the hill. Then it tried again. I wondered why they did not go one block south to the flatter, much traveled hill that was bare and dry and passable. Again, I don't always understand.

My favorite snow story comes from being down by Pike Place. We have a street that has a steep slope of no less than 45 degrees. There was a gent in a Mercedes that tried to climb the ice and snow covered street. He made it half way up before his very expensive car began to slide backwards. His car door flung open and he jumped out and tried to hold the car on the hill. His valiant effort was for naught, as the car slid down and struck many similar and expensive cars that were in it's path. It was a sad sight.

I have thought over the years about that man. I guess as humans we keep trying. We get an idea into our heads and we just keep at it. I think about Edison and his light bulb efforts. They tried hundreds and hundreds of different elements and substances to make a filament. There was so much failure but finally a good result. I think about the people that tried to fly and those that send man to the moon.

M-E has exhibited that spirit. She keeps going through all of this. She is determined and keeps her spirits up. I think about all the kids that have tried and succeeded to fight this disease and those that have failed. They all were troopers. You always hear about the kids that succeed and the ones the don't . There are no stories about quitters. I hope that we are not trying to climb a hill that is too steep in bad conditions. I think that we have a better vehicle for the journey. A tank, a HumV or more importantly, the knowledge about how to find the right hills to climb.

We are Waiting for Results

A whole lot of the last month's energy has gone to being a lawyer. It has taken a toll on me and M-E. She has had a very hard time with me being gone and pre-ocuppied. I don't know how to make the world a different place. I have promised that I will not work at home at night. I will only work during agreed upon hours at home. I will turn off my Blackberry and the phone. I guess that is fair.

She has been acting like the dog that punishes you for leaving it outside. She ignores me, trys to tell me she does not care that I am home and then cries at night that I was not there for dinner. I remember saying the same things to my dad. I never had to say them to my mom.

I want to be a good Mom but I also have to be a provider. I wish I only had one pair of shoes to fill.

We are almost 6 months into this process. We will continue. We have no choice. We are too far out on a limb to turn back.

One step at a time. One day at a time. One hour at a time.

The Hawk Paid a Visit

The wild bird buffet has expanded. In the front we have a cedar house like feeder. The squirrels use it the most. I put a few sunflower seeds there. They knock out the seeds and the pigeons clean up the rest. I have two suet feeders. The little bushtits, the starlings and the flickers feed there about every two hours. When they come, the Oregon Junko's come and clean up what drops. The sparrows and the house finches come to the hanging feeders. For some reason, they all come at the same time.

Evidently the variety has attacted a new bird. We had a Peregrine Falcon stop by for a visit. We must have some plump pigeons. I can not imagine one landing so close to the ground but there it sat. In the tree. It sat for awhile. The bird world went silent. I had shrike flash backs but the visit was only momentary and not productive for the Falcon. It did a lot to scare the birds and squirrels. They fled for a long time. They did not come in groups for a number of hours.
They finally did return and are back to their usual eating habits.

We have a lot of peregrine Falcons circling our world right now. Some just come and rest for a bit and are a bother. Some are more persistent and circle from way up high. They are the thing that makes are always just a bit tense. When will they dive and attach. Will we have the strength to fight them off? Will the world be safe after a long wait. Will there be any relief from the pressure of knowing they are there?

M-E has been fighting a cold. She has been just miserable. She has a good ANC right now due to the steroids she was on for a week. They gave her a good ANC but made her very emotional and cravings for things like Tim's Potato Chips and Onion Dip have been out of control. We are just keeping a wary eye on that hawk.

The most ominous raptor right now is the Bald Eagle that is follows her everywhere. She gets no relief from the flapping of it's wings and that swooshing sound it makes as it dives. DRESSING CHANGES: In mid December she had a new PICC line put in and it was placed in her upper arm on the inside. The skin there is very tender and there have been a number of problems with the dressings. They use something called Tegaderm to cover the insertion site. Tegaderm is like really dense plastic with lots of adhesive on it. It is impermeable to anything like moisture or bacteria. It is great until it is time to remove it. We have tried everything. She has finally decided she is ready for a Port. A Port is something that is placed under the skin and can be accessed with a needle and allows them to draw blood and give her chemo and fluids when she needs it. When it is not accessed, she can swim and do lots of stuff like take a real bath or a shower.

She has to have her PIIC dressing changed once a week. She is scheduled for today. She has made herself sick over the change and is so anxious that she slept with me last night and was crying for hours. I just don't know what to do. All of her anxiety and fear and frustration in live has been focused on this one issue.

We will go and do the dressing change today. We will work on what we have to do tomorrow. She is very wary, like the birds that know the hawk has made a visit. She won't land at the feeder until she knows the coast is clear.

Today I rest and reflect so I can continue on my Marathon.

It is Saturday and I am trying to regain my sanity a bit. We spent 5 hours on closing arguments on Friday. 10 days of arbitration/trial. It is a journey of endless adrenaline pumping, sleepless nights and what if we did........ such and such, teeth grinding, jaw clenching. When it is over you sort of peruse the neglected parts of you life. You try to relax and you try to breath again. When I walked out of chambers, I realized how tense and focused I had been. If I don't take some time to stop and recharge I will not be able to continue.

I have a million people that want my attention and they feel neglected. I have been beating myself up for not being able to meet everyone's need and wants. I realize that they are mad and it makes me sad but this last six months has taught me a few things. One is that I can handle a lot but not everything. I have limits and I have to focus on one thing at a time or I end up with no focus. I have never had a 10 day trial. They are virtually unheard of if there are no custody issues. I can handle my daughter's illness and a trial or my daughter's illness and a lots of little tasks. I can not do all three.

So I sit here and look around. I wonder, how long has that glass been sitting there? When did I last do the laundry? When did the daffodils bloom. Who forgot to pay the power bill? When did that letter come? When was that message left on the phone? When did I last light a candle and say a real prayer? Did I send the picture to my sister of M-E and Sadie for the medicine man to study? How can the cat food be all gone? Oh, dear how long has it been since I seached the bowels of the refridgerator for science experiments? When did I last laugh with my daughter? or have a meal that was not perfuntory?

Fortunately, we are through the worst. The reinforcements are coming. The schedule at work is do able. Next week will be a whirl wind but managable. It is good to have a moment to breath.

This is where I leave my prayers and hopes and try to keep life together

It has come to my attention that some people think I am wasting time that could be better spent by sitting here for a few moments and writing. This is where I try to deal with the hand I have been dealt and try and figure out how it all makes sense. I have limits of time and attention.

This is a form of prayer and meditation for me. To think that someone thinks I should not be given ten minutes a day is painful. I have been keeping so many balls in the air for so long. Everyone says that I should take care of myself. What a great idea. I should go to the gym or for long walks. I am happy if I get to go to the store for a loaf of bread. I find it more important to try and keep my sense of humor and find hope in Mary-Elizabeth's illness and struggle.

I have to go now. I have to get ready for day 9 of the arbitration that has involved all my attention. I will be able to be more attentive to everyone and everything next week.

WE did some normal things.

Saturday we went to a St. Joseph's ball game and out to dinner. Normal. It was great. I loved running into some people and seeing the girls play.

I am amazed at their progression. I loved that they all are so supportive of each other and positive on the team. They have really grown under the guidance of Jerry Verhoff and John Claeys. Jerry has been M-E's coach from the beginning. He is a great coach in that he has the deep desire to win that comes from his mid-west roots but he knows what is really important. He is a great teacher. I remember when he was so upset three or four years ago when the score was 42 to 6 or something that bad. I sat next to him and told him that anyone can be happy when they win, he had the ability to have a chance to teach them how to be okay when they lost. He is always positive and always a great teacher. I brushed the sadness away as I sat and watched M-E cheer on her team. She so wants to be a part of her old life.

We are making a new life. The old when life gives you lemons......... We are doing okay. We started a new round of chemo yesterday. It look like it might not be too bad this time. I am hoping for good results and not too many side affects. The hair is going to go but the new stuff is very soft and an not the right color. We will have to see what comes next time.

We have colds all a round. M-E and I are both hacking. I am still in my trial. It has been a time when I don't have time to sneeze.

Back to the hospital. M-E could not have her spinal tap yesterday so we are off to try again.

A short Breather

M-E is watching T.V. this morning. She is worn out. Her body has always preferred to wake up at 10:00 a.m. Chemo and this process has not improved that need. I have been working on an arbitration. We have finished day 6 of 10 days. She has been getting up and at school by 8:00 am every morning. She is also tired.

It is so hard to explain how sitting and listening can be a tiring process. I realized yesterday after we wrapped up the final question that I had been clinching my jaw for most of the week. I am tired in a way that soldiers must feel when they stand for hours information. Today I am just sitting in front of my computer shopping on e-bay for pieces for M-E's North Pole Village. Don't ask me why? Do we need it, no. Do we have room to display it, no. Can we afford it, maybe. What am I doing? I am just crawling into a little world full of mindless frosty elves and candy canes. The rest of my brain is on neutral. I don't seem to be capable of doing much else at this point in time. I may have to give up E-Bay for lent.

M-E and I are going to try and make the best of this week-end. She is hungry and her hair is growing back in nicely. She is ready in many ways for the next two months.
We are headed back to the icky treatment. 60 or so days. Lots of new oral chemo and a cytoxon overnight and the Ara-C. I have no way to tell how she is going to handle this. I am hoping that she has gained enough strength to start this again. She so seldom complains or whines about much. She does such a good job at being positive and trying to have stiff upper chin. I try to follow her example. I wish I was more sucessful.

Houses across the street update: They are covered with red pieces of red paper. I think the term is "They have been red tagged" I think that is bad. They are both roofed and some trim has gone on. They are going to be cute. I suggested Mom and dad should buy both and put a breeze way between them. We could have a way for Sadie to go back and forth.

Well, I am going to go and join my daughter in some down time. I am looking forward to not thinking about work for a day. Who would have ever thougtht that a day at the hosptital would feel like a break?

sal

Coal Mine's Daughter

I told my co-counsel that my dad had a spot of Black Lung. He asked if I that made me a Coal Miner's Daughter. So I am not the only clever individual in this universe.

I am a very grateful daughter. I am at the age that many of my contemporaries have lots their parents and I have seen the pain and anguish in their eyes. They try to be brave and are very accepting of their deaths and last illnesses but there is that deep deep sadness that comes from the loss. Our parents are such beacons in our lives. They brought us into this world and taught us how to manage our lives and love and how to move forward. They created issues for therapy and gave us siblings and did too much or not enough but all in all they did their best.

My dad had us prepared for the worst. He knows too much and if you add what my sister knows and all of on the internet looking for what we think we know, we were ready for the bad news. In this case it did not come. We escaped. We get more time and we get to relax and focus on other things. In my world, that is Mary-Elizabeth.

We continue to have a good week. I am sorry that I have this big trial going on but I do get a week-end with her or at least part of it.

I know that prayer comes in lots of forms. Thank-you for all of your prayers and thoughts and kind words.

M-E is great Dad is great day 4 of 10 Day Trial.

It is an on going challenge. I will be officially collapsing on the 5th of February.

Good news is that Mom may be able to come back. Gifts come at the best time.

Speaking of gifts, we received such a thoughtful one the other day. Gary, sweet, sweet Gary, wanted to give blood in M-E's name. He found out that direct donation is not possible but sent her a card and let her know what he had done. She said, mom I don't need it right now but I know that someone does. She truly appreciated the donation.

Some Waves are not all Bad

They removed something from Dad's Lung. They don't quite know what it was but it was more like a pocket of ickie stuff and it was not malignant. Mom is home. Dad is in the hospital and we are not allowed to call.

I recieved a letter from Dad today. I would have cherished it forever. I don't think I will cherish it any less now that we know he does not have cancer. He is a very wonderful and wise man. He always knows just the right thing to say but that is a father's job.

Mary-Elizabeth is trying to negate the life estate she gave dad in Sadie.

We are all going to sleep better tonight, knowing that this wave will not be dragging us into the sea of sad good byes- Yet.

Waves

I was sitting in the office the other day and looked out the window. I have this great view of the south end. I watch planes land and take off. I watch the traffic weave into town. I can see the goings on in the Qwest stadium. I sat on Wednesday and watched this dark cloud move over the area. It was moving fast and was a deep, deep gray. I had this moment of panic. It was fleeting at the most but was very very real.

That panic came from another part of my brain, the more primitive part that let's us know the Saber Tooth Tiger should be avoided at all cost. I have felt that bit of panic before and I remember those times very distinctly. Once was when the King Dome was blown up. We went early to the office to watch. Lots of people were there and we had a perfect view. We watched and waited and then we could see the small explosions that ran up the spines of the supports and then the inevitable and expected collapse. What brought the panic was the cloud of dust that the explosion created and the sight of people running away, in a panic. We knew we were safe and the cloud would not reach us but the sight was enough to create fear and a raised heart rate. I am sure all the victims in the Indian Ocean had the same reaction but their fears were realized.

I also have great respect and some fear of "Big Water". I was floating the Boise River one hot afternoon and our group became separated. I was in the middle of the river and tried to stop and stand up and wait for the our group. I tried and tried and realized that even though the river was only 12 to 18 inches deep, it was powerful in it's collective movement. I had to get to shore in order to accomplish my goal. I was very taken aback by that realization of it's power. It was so deceptive.

I am running from a big cloud of dust and the big waves and trying to get out of the strong current right now. Intellectually I know that there are many many fears that should be put away with logical and reasoned thinking. But there is this little bit of primitive panic in the base of my brain. It sits there like the Saber Tooth Tiger, ready to pounce when least expected.

I just feel impending disaster all the time on the edges of my life. It does not take much to throw the whole thing out of kilter. I do feel the waves and waves of good thoughts and prayers and know the whole community is doing what it can to help us maintain and stand up in the current. I know that we will make it safely to the shore and be able to stand and move on. It is the getting there that is sometime so hard.

Thanks for all your help in our efforts. I do believe in the collective power of the positive and it's affect on the universe. We will arrive some day.

A Moment of Relief

We are finally in a good place. We are finally having some normal eating and some normal energy. I am amazed at how she feels this week compared to last. We will have one more of these weeks. She will be up this week and able to do some things. I will not push it but I think we might even get a movie this week-end. I wonder what is out there. Polar Express?? We are a bit behind.

I hate to let my guard down. I have done that before and then been side swiped. I also want to enjoy the good moments. I guess it is a balance game we play. Maybe we play it all the time as parents. Moms forget the pain associated with child birth as soon as they hold the child. Parents continue to take their children to the store even if there is an unholy tantrum one bad afternoon. Dads melt when there little girls smile that endearing smile and ask for something more.

Maybe we have short memories. Maybe we are just a very hopeful and forward looking species. I just know that I am looking forward to this day.

He wanted a Cigar

We received some news about Dad. He has clear lymph nodes and will have surgery on Monday. They will look and do a frozen section of the lesion and then determine how much to remove. Maybe a little, maybe a lobe.

He sounded very happy, his only complaint was that Mom would not stop and buy him a cigar. See, it is not my fault.

We are not out of the woods yet but the timber is not so thick.

Introducing my friend "What Now"

We are in waiting mode. It is a hopeful place but then there is that nagging fear that something is really wrong. I have learned to live with that fear. It has become my shadow. I should name it "What Now" I think I have earned the right to feel like that at this point in time. I have enough faith things will work out but then working out is not the same as having things your way. I hate having to keep learning that lesson, over and over again.

We are waiting for the biopsy results. Dad had the biopsy on Tuesday and had no complications. He is scheduled to have some sort of surgery on Monday of next week. (That would be on the second day of my 10 day arbitration.) I am co-council and my real part doesn't come until the end but then it is still stressful and difficult and not fun.

We have three possibilities at this point in time. We have the removal of the lesion only. A little section would be taken out. We have the removal of the entire lower lobe. We have the chemo and radiation route if the nodes are positive. So we wait. Three possibilities and two good options. So we wait. Did I mention we are waiting?

Every time I receive a phone call I assume it is bad news. If I am a bit jumpy and I have been so distracted. I have some good reasons for my bad behavior. I did not even know that today was the inauguration. How could I have missed that bit of news? I know they have shut down DC like a war zone, I know they have been selling expensive tickets for all the festivities. I know that the Ritz Carlton has a package for two for $150,000.00 but that is the end of my knowledge.

This realization made me realize I probably owe some people an apology. If I have not been as good of a friend or communicator, I am sorry. I hate to let people down. I hate to not be the best person I can be in the world. I hate not paying attention to important things. I hate doing the wrong thing. I hate when people ascribe hurtful motives to my behavior. I have been so focused on "What Now" I have let things slip. I will try to be better.

I keep thinking things will settle down and we will get back to life as we knew it. I am beginning to realize that "What Now" will always be in our lives and we have to find a new definition of normal. We are on a path not taken by many and every journey is different. "What Now" is probably in lots of people's past, current or future. We have all had a visit from him or her. I guess we have to take the new friend with a grain of salt and try to fit them into our lives without ignoring or destroying our old lives and relationships. The fact is, 'What Now" and her cousin "What Next" are here for a while. I guess it is time to put them on the e-mail and Christmas list.

Tomorrow is an important day.

Trial brief due, clients to appease, chemo to negotiate, side affects to treat, Dad has a lymph node biopsy and my baby sister turns 46. I can not believe how old she has become. I am not a day over 22.

Keep us in your prayers.

Oh, the tresses for the houses arrived. They are not going up three stories, only two. I snooped around. Two bedrooms on the main floor, one upstairs. I would say they have about 1500 square feet of living space. I love my little house!!!!!!!!

We are ready for the week with what ever challenges that come. I feel a bit battered like the houses across the street. They are dark, and wet and not much to look at right now. I can see their potential for the future. We all will arrive at that happy, light and well constructed place again soon.

Yuck, a trip to the hospital

Well we were not successful in staying out of the hospital. She was just throwing up all day. The closer we were to bed time the more she was getting sick and the color was getting very green. We headed to the hospital in sleet and on icy streets. As soon as we arrived, I began to become the evil mother. It must be confusing to the hospital personal. We arrive asking for help for our child and then begin to push for instant release. We have enough experience to know that if we stay too long we have to stay overnight and that it not a good experience for anyone at any time.

So thus began the "Get us out of here!!!!" Rant and rave. We now have it down. First fluids, fast fast fluids, then the negotiation for more than 4 units of Zofran IV. Like I went through all of this for 4 units. Then the always necessary explanation to the new baby resident that her liver function tests are not something that requires an immediate transplant, rather we are in great shape when the tests are viewed from the Hem/Onc world. Oh, well, I don't want every pediatrician to have a detailed working knowledge of lukemia in any of it's forms. No one should have to go through this process let alone more than the 3000 kids who are diagnosed each year.

We did make it home. M-E was mad at me for pushing so hard. I knew she would sleep so much better in her own bed. Home is such a haven. Thank God we get to return to our little bit of Ballard every night. The most we have to negotiate would be the cat's demands.

We are hoping for a better week. We are hoping for no more Methotrexate. We are hoping for school. We are always hoping for a miracle.

The Flickers are back

Freezing rain, wind and upset stomach's don't go together. I keep believing that each day will be better or at least manageable. She doesn't seem to keep anything down. Thank God for Baxter the infusion pump. It keeps us out of the hospital.

I looked out the window this morning and the entire family was present. Mom, Dad and Baby Flicker. They come and hang on the suet feeders. Each taking a turn, each watching out for the other. Since the big holly trees across the street are gone they are more visible. They like to hang on the telephone poles across the street. They work their way up and down with ease. I am surprised that Baby is still here. They are not a flock kind of bird. Not like the sparrows or the Oregon Junkos that appear enmass all the time. We might have more than three but that is the most ever spotted at one time.

The Flickers are a very nice little family. They provide us color, variety and parenting tips like let Baby eat second. Not first nor last, but second. Approach your destination in stages, always be on lookout for danger, stick together and keep an eye on each other and keep close. I am incorporating all those things right now.

I need to eat first or sometimes that does not happen and I get short tempered. Try everything to stay out of the hospital; approach it carefully. Keep vigilant, make sure the meds and fluids and everything is taken care of on a daily basis. Make sure there is time for lots of hugs and close contact.