Thursday, March 31, 2005

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.

Wednesday, March 30, 2005

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.

Saturday, March 26, 2005

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.

Friday, March 25, 2005

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.

Thursday, March 24, 2005

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.

Tuesday, March 22, 2005

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.

Sunday, March 20, 2005

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.




Thursday, March 17, 2005

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.

Wednesday, March 16, 2005

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.

Sunday, March 13, 2005

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.

Saturday, March 12, 2005

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.

Wednesday, March 09, 2005

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.

Monday, March 07, 2005

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.

Saturday, March 05, 2005

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.

Thursday, March 03, 2005

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.

Tuesday, March 01, 2005

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.