Saturday, December 30, 2006

Thoughts on the End of the Year

They are a strange sort of thing. Thoughts and new plans. I guess I have the belief that 2006 should be summed up and plans made for 2007. I feel a need to do the usual unkeepable resolutions and then find the list and laugh at my big plans. It seems to be part of what we do with life. We plan, we resolve, we organize and plan some more.

I don't feel that I can do that right now. I can plan some of the big things. The major events that require more than grabbing a tooth brush and going out the door. High School and two 4 legged creatures make that difficult. They require some thoughtful planning. A movie can happen on the spur of the moment. A play takes a bit more. Dinner plans are easy. I guess it is about taking a few hours here and there. Maybe that will be the resolution.

Not the Basement: One box at a time.

I will work on the list for tomorrow. Maybe that will be the resolution. Make a list of things to do. I did find a frame in the basement and I did frame a picture of one of M-E's art pieces. See I can accomplish tasks.

Wednesday, December 27, 2006

The Big Wind Down

Lots of activity. Lots of clean up. Lots to be thankful for. Lots of great friends. Lots of great family. Lots of things to think about. Lots of dishes to put away. Lots of things to think about and do. Lots and lots and lots.

But I guess the best part is that there will be lots more Christmas Seasons. It is so easy to say that you know things will "be alright" but the real test is in having that all rightness deep in your soul. It takes that kind of belief in Santa to make it seem real. Remember back when Santa was so real. He cared and he delivered. It was a simple relationship. You were good and you were reasonable on your list. You communicated the list and you waited. No doubts. Not questions that it was going to be great and the thing you wanted or in some cases, the perfect present that you did not know you wanted but Santa could see the want deep in your heart.

You know you have to believe even when the reality of and enormity of what Santa does starts to creep in to your Psyche. Flying Reindeer are not as hard to swallow as the size of a sled, the number of houses and the time thing alone.

It is the same with Leukemia. It takes a long time to even believe that your child has it. It is so intense at the beginning. The chemo and appointments and the expected side-affects that don't come and the unexpected ones that blind side you. Telling everyone, trying to make them feel better because if they feel better maybe the making them feel better will make you believe it is okay.

The "its going to be okay" is starting to sink in. The fact is we are surrounded and aware of so many that don't have a happy ending. So many that the littlest thing goes wrong and they never are allowed back on the path. Things you only hear about and never really know exists in the world.

We have been so blessed by our family, our friends, our doctors, my work. I could never repay those that have given so much to us. I can do stuff for other's and give back when I can.

We are winding down but then gearing up for the best year of all 2007.

Tuesday, December 19, 2006

Ornament Hangers and other Christmas Issues

Where have all the ornament hangers gone? They must be hiding with all the good Christmas Cards. I am not impressed. maybe as we get older we are more interested in quality rather than quantity. I value my ornaments and they need more than 54 gage wire ( I think that is thin) in a little pack for 59 cents. Hey I would be much more inclined to spend a few bucks for hangers that won't release their charge and smash years of memories on the floor.

Oh, I have become my father...... Now there is a realization.

I am done with work sort of for the rest of the year. I am going to try and turn it off in my head. I really need some time to do some mundane things like put up more tasteless Christmas lights and get out the last of the Christmas cards.

I have a list:

1. Organize all my pins. They are in a number of boxes and should be out somehow to be seen and have a chance to be put on a Jacket.

2. Clean out and start the pond. It would be great to listen to with my new windows.

3. Wash the covered area stuff. I have a new washer, it should be useful.

4. Clean out the cool blue bowl, sort through the rocks for the good fossils and put them in a good box. They are old and need some care.

5. Get tickets for the theater for the Tap Root.

6. Relax, relax, relax.

7. Find the lost gift cards that I put somewhere.

8. Sort through a box a day and get rid of stuff.
9. Put all the pictures in one big box or several.
10. Relax, find some decent ornament hangers and Christmas cards for next year and figure out what the denomination was for 1975 Christmas stamps.

Thursday, December 14, 2006

Maybe it is Over....

We have just been going to school and going to work and doing homework and writing Christmas cards. The tree is purchased. The gifts are under control. Not much going on there this year. I have to make decisions about Christmas Dinner. What to serve. Lamb, Bone in Breast of Veal or wild Mallard. How to decide. Maybe we will have a real pagan feast with only meat.

I am seeing a change. I don't know if it is really there but it is a change. A bit more energy, a bit more umph. A settling into the hair coming out. I think it has slowed down. I think it heard me say, let's get curlers and a curling iron and lots of hair goop. If it is coming out lets just fry it on the way.

I have thrown, literally, thrown some lights out. Hey, at night it just looks pretty, freestyle. I think I am ready to fact clearing the table and looking at the boxes down stairs. It just feels like work. I am trying to just recover from 2.5 years of hell. I am not motivated to do the perfect Christmas because I am certain for the first time that there will be more of them to come.

I also am in a battle with my child. We might have to have separate trees from now on. I want a white tree with white angles and silver starts. She wants color and big and glitter. It must be from her father's side of the family. I want simple and clean surfaces and garland and ribbon and ............. Oh, maybe I am to blame.

Oh, time to get back to work.

Monday, December 11, 2006

Post-Chemo Depression

It is not found in any versions of the known DMIV that keeps track of those sorts of things. I think M-E has a case of it. Last night she said it did not seem like it was over. I would agree with her but then.......

She said that even though the chemo made her tired and was a constant reminder that she had cancer, she said it was a comfort zone. She knew what to expect and how she would feel. Now she is waiting to see how she is going to feel.

Because of the long use of the drugs, the recovery will not be swift. She is going to work on rebuilding her red blood cells. She has been on the low side of the supply and all of that takes time. Reds are weird creatures. They live for 120 days or so and evidently don't always get much of the bone marrow factory time. They say it will take six months for her to recover her counts. They will increase slowly over time.

I would prefer a bit bump. Maybe back to normal in a week or so. Seems reasonable. You would think that if they could kill them so fast they should have figured out a way to make them come back. Seems only fair.

Thursday, December 07, 2006

Here at Last Here at Last Here at Last

I can't believe it, I can't' believe it, I can't believe. I have to let it sink in. Too much going on to do a proper entry. Just know we are breathing......... Grateful and very relieved.

The last dose.

Tuesday, December 05, 2006

Tears and Anticipation

I think I am starting to breath. I don't really know for sure. I am just a bit edgy and ready to deal with life in general and just wanting to get on with it. For the first time in a long time I feel like we can make some plans and look into the future and have the presence of M-E as a part of that future. I am just feeling the tension and the stress leak out in positive way.

The windows were installed usterday. What a project. Hard to imagine the uproar of 5 big guys swinging sawalls and diamond blades and sledge hammers. This house is going no where.......

Sunday, December 03, 2006

We are not Alone on this Journey

the path with us. I knew we had a special bond that can only come from holding another's child while a weary mother goes for a few minutes off the floor or from answering a call from a scared mom that has suddenly realized death comes to these children no matter what the science and the power of prayer. Over the last couple of years there have been times that we have felt so so isolated. No real life, no real contacts. Sneezed, coughs, a weird rash kept people away. While we have been joined on the path by complete strangers, one group that we have quietly traveled with are the other families and children that were on

Well as we are ready to step off the treatment path other's continue and their connection is very real. This morning I read the passage below and simply cried in thanksgiving and joy. It made me realize how deeply others can touch us and their success's can renew our faith in the universe that good does happen and grace is real and very very much a part of our lives. The only thing I wish is that I had met the lama!....Oh that is right, this is not about me.

A Message from the Reinfeldts

Elise’s counts today jumped from 0 to 183. Rejoice!! What this means is that the bone marrow donor’s cells have successfully found their way into Elise’s bone marrow and are beginning to make new cells. It will be just a matter of time before Elise’s mouth, throat, GI tract and more begin to heal. We just need those white blood cells to kick into overdrive. Docs say that to be “totally engrafted Elise must have three days in a row with counts at 500 or above. Shouldn't be too hard…with God all things are possible!

More exciting news, Elise’s bone marrow donor wrote her a brief letter and sent her an “angel” pin. It appears the donor is interested in letting us get to know her a bit. We pray that the day will come when we can meet her in person.

Also, a 70-year-old Tibetan lama made a special trip to the hospital to pray for Elise today. Aunt Mary's relationship with this man made this all possible. It was an experience our family will never forget. We are in awe of the diversity of humankind who dedicate themselves to healing our family – through prayer, kind words, acts of service and quality visits. The blessings are abundant and go a long way in sustaining us day after day.

Friday, December 01, 2006

One More Week until the END


The end of lots of things but not the end of other things. No more Oral Chemo Therapy. No more IV Chemo. No more Spinal Taps. No More Bone Marrow. No more panic about temperatures that reach 101. No more panic about Cesear Salad, no more guilt when eating sushi (she cheats sometimes,) No more fear of Blue Cheese Dressing. No more panic over other's illness. No more weeks of prednisone or Methotrexate Tuesday. No more stockpiling of odd things like Zofran and Emla Cream. No more medical waste or medical supplies in the hall way. Lots of no mores

Still monthly trips to Children's for blood draws and appointments for a year. Still trip to the operating room for some teeth fixing on the 19th of December. Still a last trip to the operating room for the port to be removed.

We are looking forward to the return of fully operating immune system, a full set of red blood cells, a complete compliment of platelets and someday a return of the reflexes. We look forward to M-E feeling better. A return of energy that comes with the right amount of red blood cells.

There will also be no more Mary-Elizabeth's Bump. It started at the beginning and should end with the ending. This covered the diagnosis and treatment and comes to a logical ending.

There will be a new beginning. At the beginning of Leukemia was were overwhelmed with information about what to expect. I have been given NOTHING about what to expect now at this point. What is the world of Post Treatment like? I guess I will be finding out. As soon as I figure our a clever name and address I will post it.