THINGS THEY DON'T TELL YOU ABOUT LIFE AFTER A DOUBLE CORD BLOOD TRANSPLANT OR ANY TRANSPLANT : September 2005

Friday, September 30, 2005

Ode to Duct Tape

I love duct tape.
Duct tape can fix anything
Duct tape in the hands of a perfect stranger
can make your radiator hose stop spewing anti freeze
on 4th Avenue at 9:00 am in the morning
Duct tape can keep the distilled water in your cooling system
as you drive to the dealer to have a hissy fit
Duct tape is not a pretty color but it is your friend
Duct tape and water can be purchased at Bartells
Anti-Freeze can not.
I love Duct Tape.

The End.

Tuesday, September 27, 2005

Some One Asked How I Was Doing

This is the Garage, in progress......
Meet Doug, our great painter. I have his number if you need some work, he is very handy.

Things Do Work Out

I wonder. I wonder if "Intelligent Design" is not a concept we should not explore more fully. I always have my doubts and then things like the Venice trip are postponed and then the need for lots of attorneys in the office billing lots of hours happens. Due to some weird coincidences, three partners and one of our contract attorneys are all gone for a while. Vacations, meetings, things not planned or expected. So we need bodies that can handle the work flow.

So, I am now handling other person's work flow. I had blocked this time out for vacation so now I will be able to be available. Except for today.

Today she is sleeping. Post high dose prednisone, she has a crash day. A day where only sleep will do. She slept for more than 13 hours and is back to sleep now. One good restorative day and she off the the races again.

I will work on some at home projects and some office stuff via my computer and then I will see what else can be accomplished. Lots to do, always.

The neighbors either love it or hate it. ( Pictures by tomorrow.)

Sunday, September 25, 2005

The Marys in My Life.

Our Mary corner. Lots of Marys, as I have always said, "you can never have enough Marys". The Mary in the prayer garden at ST. Joe's. She is little and quiet and I wish more assertive. I think the real one was much more definant but she was about 16 when she had Jesus and part of a very restrictive culture.

Grandma Mary and of course M-E. I wish I had a picture of M-E's other

Grandma she is also named Mary.
Then there is Our Lady of the Lost and Found. She has been with us through this whole battle. She sits quietly and gathers' good wishes and special things. Notes, Fortune Cookies, special charms and amulets. Lorraine made her for M-E as soon as she was diagnosed. She was made in a couple of days and has been a constant reminder that we are not alone. We are surrounded with people that love us and pray for us and send us good wishes all the time.

She comes from the book by the same name. In the book, a middle aged women goes into her living room and finds the Virgin Mary needing a rest. She has had a very busy 2000 years of prayer answering. She then retells those two thousand years that history seems to have forgotten.

In the book there is a passage about the Guadalupe Web site where it is possible to pray the rosery from you computer terminal. It also has a place where you can "light a candle" and send your own prayer of petition or thanksgiving. The author was amused until she began to read the prayers, thousands of them from people that felt any kind of prayer, even a cyber prayer had value. She pointed out the following:

"In English, the word prayer is most often used generically, encompassing all those moments when a person talks to god. In doing se we are also talking to ourselves, describing and addressing our own deepest fears and needs"

Heaven knows that Marys in my life have heard from me a lot. From Mom to God to Mary and Mary-Elizabeth. Some frown on "intermediaries" for presenting prayers and it is a bit odd for a former Presbyterian like myself to think about it. I guess the reality is that I am very fond of Mary. I can relate to her so much more than many others. She had a child she knew was going to die and there was nothing she could do about it but help him in his mission. ( Don't freak, M-E is doing great. I just have alot of sympathy for Mary. She had no modern medicine or miricles on her side.)

I am not sure about how the universe is really organized. I know that there is a God. I am not certain it is the "God" of many artists or the "God" of Hollywood. I just know there is a god. I am certain that she is more female than male, not that it matters. I just believe that creation is more female. It is more right brained than left brained. I know there is some very important male aspects to god because creativity is good on one plain but needs some much necessary linear practicality that is more of the male proclivity.

Like all people, I have come in and out of faith. It has taken different paths at different times. I have always wondered how to deal with all the inconsitancies but putting some of them aside, like famine, hurricanes, the wiping of whole villages with plague, hate, evil, war and all the other nasty mess, I know I am not alone. Nor do I believe we are a freak mixture of amorphous atoms that became our world. It all works too well.

I can so remember when I was first pregnant and I realized what was happening deep inside of my body. As M-E grew and developed and finally arrived, I was amazed every day. It all worked so well. I craved red meat while she was taking into her body all the iron she needed. I was further amazed with breast milk and who it changed in volume and composition as her needs changed. I was amazed how much a person she was when she was born and how she has blossomed over the years. It is not by chance.

I look back over the past year and a few months and am more amazed. Thank God we never moved. Thank God for eye appointments. Thank God for good friends that give of their time and their resources and their selves. Thank God for all the good things we have learned and the things we have grown to accept. Thank God for warm sunny afternoons and good Dixie Chick CD's. But most of all Thank God for all the Marys in my life. They have gotten me through much.

Saturday, September 24, 2005

Thoughts on a Mixed up Day

It was 36 degrees in my back yard this morning. Fog, clouds. Now it is 70 and no clouds in the sky. It is sort of wonderful in that respect.

M-E has been doing homework all day. She has become quite the writer and is very dedicated to her work. She loves school and it is her way to keep her anxiety under control. She hates pressure and it is how she keeps the pressure from getting to her. She very task oriented and wants to have a task done once it is started.

She can not stand to have any pressure. She does everything to be organized and make sure that everything is where it belongs and is ready.
I marvel at this chemo skill but then she gets some of it from her Dad who will not stop a project until it is completed and I am a pretty darn good project organizer. I can take a big project and break it down into life size chunks. ( Oh, new quilt is almost ready to sew together.)

I am a bit worried about this "nose to the grindstone" attitude of hers. There needs to be some fun but we are getting to that part of the week-end.

The Hives are residing, like the waters in the Gulf, but we are living with the after affects. The high doses of Prednisone leave her very very achy and her sleep patterns are a bit off but we are hospital free until the 3rd of October. We are not talking about Venice in the present tense. It is now a very future activity. She has mentioned that she would have been better but then acknowledged we did not know she would be better.

We have switched to high school applications. They are coming in and we are going to Office Max for the perfect note book. We areapplying to Holy Name, and Blanchett. We have to look into the public schools also. I say we because I am writing the checks and and making the appointments and trying to figure out how to pay for all of it. We shall see how that the procees goes, visitations, applications, tests, open houses and all the rest. I guess it is good practice for college. I am new to this process. I lived in a one High School town in the good old days where no one swore on television and movies were a nickel.

I have probably been the most disappointed over the past few days. I need to buckle down and focus on the rest of the year. I had been sort of "surviving" until the trip when I could really relax. I have decided to take a couple of days and do some "power relaxation". I started by taking a nap today. It is a start. I have to dive back into work. April will be a good trip.

I am getting back at the universe by painting the house. Not the house but the trim. Oh, I will put up pictures. Visualize Starburst. Enough said for now. It should be done by the end of next week.

Oh, thanks for all that everyone had done to get us ready for our trip. The new shoes, the change for the Venice Jar, prefect bags, the guide books and other information. All the great support and good thoughts. They will not go to waste. I promise. Come hell or high water ( a real possibility in Venice) we are going to drink expensive coffee by the canals.

Wednesday, September 21, 2005

Mom and Dad Showed Up with Sadie

Mom and Dad surprised us with a visit. They brought Sadie back for Mary-Elizabeth. She was very happy to see her dog. Sadie is a bit confused as always.

We are working on high school. It is our new project. We have to schedule visitations, fill out applications, obtain recommendations, take the tests, pay the fees and then pray. I don't know anything else to do.

I am so conflicted. M-E and Whitney have been such good friends for so long. I hope they are able to go to the same high school. I am afraid of what it would mean if they were not together. Some good things, some not so good.

I can not say enough about how Whitney has helped Mary-Elizabeth during this last year. She is always cheerful and will watch television or just hang out. She will play games and do beading projects or painting or drawing or read. Mary-Elizabeth loves Whitney for her humor and her great kind heart.

Well, I have promised myself that I will not worry about that part of the future. I have only so many parts of my overtaxed brain that can go for worry. I have to give Mary and God and the Universe a chance to work. Every time I think this chapter is done, I receive a reminder that I have not control over the things that happen in life.

I just hate those lessons. But evidently I don't have not learned my lesson yet........

Tuesday, September 20, 2005

Lots of Tears

We are working towards late April, early May. Lots of tears and hopes of getting to go now.

She woke up in such misery yesterday. I sat her down and told her we were not going to Venice. I said as a parent, it was my job to make the hard choices and decisions and I had made the decision that now was not the time for this trip. No argument, not discussion, just dealing with it.

It was the right decision. I followed my gut. Maybe that was why I did not get out the suitcases yet. We have the outfits. I think it is ironic that the "hoodie" M-E bought is the color of this type. Perfect for Spring.

Well M-E does not know it yet but Mom and Dad are coming with the dog today. It will be a great surprise. I have to go do some Laundry.

Monday, September 19, 2005

I Pulled The Plug on Venice

She woke up this morning covered from head to toe with hot itchie rash. She if off her chemo and just not stable. Tears have been flowing.

We will do Venice and it will be better than ever. We will have more in the Venice jar and our "comfort" shoes will be well broken in and no more blisters.

Life is sure a challenge and an adventure. I lit a big candle yesterday. I might do another.

Sunday, September 18, 2005

A Gathering of Good Friends

I could not stand it any longer. I had to quilt in the the company of good friends. I simply said let's Quilt. 9:00 am on Saturday. Any one and every one could come, make a mess, and do some good things.

They came. It was a chance to spend the first real time with my quilting buds in almost a year. I so miss the chemistry, the comeradity ( I will look this word up later.)and the chance to catch up. It is so so good for the soul. We are going to do it again, a month from yesterday (Saturday Morning). 9:00 to whenever.

M-E and Whitney worked on vocabulary, poems and other homework. We sewed, we bound, we knitted, we listened to each other's stories, we were together. Being together is so important, we feed off the strength of each other. Hearing each others stories helps us gain insight and, the sharing of encouragement is so healing. Maybe those of the Jewish faith are right when the women gather separately. We always learn so much from each other.

Oh, lesson from yesterday:

Lent: is only 40 days long and Sunday's are a day off. I always thought it was from Ash Wednesday to Easter Sunday. I will be getting my calendar out and counting. I always give up fabric shopping for that period of time and it is a struggle. I wonder of Jesus was off on Sunday? I must think about it

Thursday, September 15, 2005

Friend's Funeral's are Strangely Disturbing.

I was strangely and seriously disturbed by Miller's Funeral. I did what I could to fight against the angst. I wore a very flashy red dress. Maggie purchased a boa for me in purple. I got up the courage to stand up, sob and then speak. Yes, I can edit an endearing yet bawdy story for the masses. I drank two martinis and still had the feeling in my throat where you are holding back tears.

I don't know why this was so different than others. I have lost and mourned grandparents, a sibling, aunts, uncles and others. I have been to a funeral for a child who died of ALL. I have sent condolences to the masses. I have watched friends loose parents and significant others but this was different. This was a friend.

A dear dear person that had been in my life the entire time I had been in Seattle. A person of character and class. A person that struggled and won battle after battle. Cocaine, Alcohol, lymphoma, pneumonia, every "opportunistic' infection around. This was person that went shopping with me to Fantasies Unlimited for kinky underwear. This was a person that presented M-E with a sterling silver cup when she was born and her first "Troll Barbie". This was a person that I loved so deeply.

Now there were gaps in our relationship. He had times that his addictions took him to other realms and places I could not join him. He went to "Treatment" more times than I could count. He really wanted to be clean but there were lots of obstacles that interfered. I recall the time he called and was very angry that Medicaid would not pay for a certain program. He called to see if I would help him with an appeal or at least write a letter. I listened to his concern. He wanted to go to a program with "Equine" therapy. My reply was very simple. "Are you crazy, Miller you are going to treatment, not summer camp!!!"

We both laughed together and cried together and kept our eyes on each other's lives. We came together when we could and knew the other was always there.

Having such a loved friend die has made me "weepy". I guess it is projecting how the rest of our lives will be. This is just the first of many such funerals we will attend. We will begin to look at the obituaries for more than just our parent's friends. This is not about counting the days and months and years we will have to live but counting and evaluating the emptiness that will befall us when our friends are not longer on this "mortal plain".

Lots of people complain about getting older. I have always pooh poohed it. Crows feet and celulite and invasive medical tests, who cares. That is just mis-placed vanity but this loosing friends is a bitch. That is what we should be complaining about.

We all have family and are lucky to have siblings and close people with whom we have a long history, they are part of our lives from forever. But our friends are very different. They are people we meet and bond with at different times and for different reasons. We choose to have them in our lives. We share moments, events and things with them that we don't share with our families. The reality is our friends are our second family. The one we build when we have a better understanding about how important family can be.

If I touch one tenth the number of people Miller touched during his life time, I will consider my life to have been of value.

Miller, I am not sorry you have died. It was well past time. You struggled so much for so long. It was time for you to stop all the nonsense and stop this battle. I am so so sorry you will not be here to see M-E graduate or to see what color I paint the rest of the house. I am so sorry you won't be able to give us suggestions about Venice or Paris or where to find the right kind of pate.

As Kirk and Lisa put it : "The world's closet just got a little smaller."

Wednesday, September 14, 2005

Hives are Back

No answers, no relief, no way to figure it out. So here is the plan: Prednisone, not other meds, not berries no tree nuts.

and we wait.

Tuesday, September 13, 2005

Bits of Fall

We are looking at a bit of early morning fall. I took an early morning picture of one of my

Katsuras. It is touched with bits of orange and yellow. The other one will turn a bit later and will have red high lights.

I love my trees.

We planted them 11 years ago and they have been a wonder to the neighbors ever since. They just keep growing and changing. The shade is becoming significant and the birds love them.

They are not all that they appear. They seem tall and strong and significant this time of year but when the leaves go, they show a weaker side. I look at them now and wonder if I will find a nest in them. I am always surprised that there branches are so insignificant even now. But each year they grow stronger and more substantial.

At some point the birds will deem the trees worthy of nest building. Like many things, it just takes time. And time is not to be rushed.

M-E looks great right now. She has regained some of her weight, her hair is coming back and looks so cute, (although it is not red and curly and I am disappointed,) she is going to school and has rosy cheeks. Her leaves look great but the branches are still growing and regaining their prior strength. She is not quite there yet.

I have to remember every day that we are not quiet "Nest" ready. It is a long way back. No easy ladder to the top. We have to make the entire journey.

Oh, the flicker came back and scolded me for not having any suet. I will take care of that today.

Monday, September 12, 2005

shooooooooooooooooooooooooooooooooooo

That is a big sigh. M-E's back on track. They are going to introduce her body to her oral chemo in half doses for awhile. They think they were a bit too energetic. She is going to get a rest.

So am I.

Sunday, September 11, 2005

What a Day

We all live in the shadow of some sort of impending doom. It is part of the human condition. Think about the fire fighters that are helping in the wake of Katrina! What a day they must be having.

We are just that human. We have no control over the world we share with our fellow creatures. We have made "advances" and "choices" that have affected the world. Each thing we do and each thing we don't do affects a huge web that surrounds us. We are so silly to think that we don't have a huge affect but we do.

I have watched the news and read the blogs and have felt more and more insignificant each day. I have been horrified at the images and the reports of the guns and bad behavior. I want these events to make us better people. To make us realize we must be kinder to each other. Being kind can make a difference.

I ran into Ellie the other day. She is the 2.5 year old that was M-E's first roommate. She was the child that had a brain tumor and a twin brother. She was so so sick during her chemo. M-E was so upset with how much pain and agony she had been in during their time together. Her parents always apologized for the crying and we always were so sad she was sick. She has hair, she had had some other problems and but is making progress. She looked a me and asked for a Sticker. I had alway given her one when we saw each them in clinic. She smiled and then grabbed something from her brother and that made me smile. I never thought twice about a small acts of kindness but she did.

I have found myself trying to be less rushed and more patient in my life. I have spent so much time worrying about M-E that I have taken my focus off the rest of the world. I am going to move my efforts towards the world a bit. Not much left over but there is always a moment to say something nice to someone or to be encrouraging. A smile goes a long way.

Saturday, September 10, 2005

AT LEAST I AM NOT LOOKING........

Blog Archive