Sunday, August 29, 2004

Just a Short Note

I was going to go to work today. I am feeling I really need to be there but then M-E made it very clear that I needed to be here. I have worked over the years to make her independent and self sufficient but she needs me more than we both know.

She is having to take command of a more than any child should at age 12. She is managing her testing of her blood sugar. She gives herself two insulin injections and two blood thinning injections a day. She pokes her finger 5 times a day , including one at 2:00 a.m.

I feel like I have a new full time job. I guess we are all going to have to ajust to a lot. I just hope I can keep on working. I know what I am doing is important but I need to not think about this all the time. I dug out an unfinished needlepoint. I will be working on that for a while.

Today my goal is to not grind my teeth and try to buy a Blueberry no it's a Blackberry. As M-E noted "Buying technology takes longer than you think."

Wish me luck. Say an extra prayer for remission by day 28. Or September 7th.

Sal

Saturday, August 28, 2004

When they say it will be a short visit. It is a lie.

So, we are home now. That would mean were have been gone. I went to work on Wednesday A.m. and met Mary-Elizabeth at the Hem/Onc clinic for a nurse visit and an asparagus shot. Well, we were able to come home on Saturday about 3:00 p.m. So much for an hour appointment. We are unpacking and pre-packing for the next time we go for "an hour".

We had to learn how to handle the first of many side-effects of the Chemo. No, she has her hair, her cheeks are not round and rosy, her blood sugar (BS) is elevated and now we are dealing with testing 5 times a day and two insulin shots a day. Oh, well. We are trying to take it in stride.

I am beginning to understand some of the lingo.
a: We will be there soon = before you die we will drop by and chat.
b: I want to keep her overnight= Maybe you will see your home before you die.
c: We will be changing your diet=Have as much sugar and fat as you want.

All and all we are doing great. Work has been great. I am working on working at home. M-E is getting ready for school and will be there as much as possible.

She is off to test her blood sugar right now. What a trooper. She would like everyone to know that her favorite part of this whole process is her One Touch Ultra machine, like on t.v. and getting put to sleep on Monday's for her chemo. She also loves the cards and presents and balloon and good thoughts everyone has been sending.

Week 2 of more than I can count.
I realized this morning that it had been just two weeks. It feels like much more than that.

Wednesday, August 25, 2004

The real story of August 14th

Well we got up early and drove to Chelan. We stopped for good pancakes on the pass and arrived by noon. The girls settled in and I did some shopping. We napped, we watched a movie and we ate some dinner. Whitney had a headache and a stomach ache that seemed to go away when PeptoBismal was offered.

We went to bed and I got up very early to have some coffee. M-E and Whitney had slept on down stairs couches. M-E went into my room after I was up so she could sleep. I was sitting outside when M-E came storming out and handed me my cell phone.

"Mom, your phone woke me up!!!!!!!!!!! "

Little did I know, that would be the last thing she would say to me in the time before Luuquemia.

It was the voice of Judy Sommerfeld. She is a friend from teaching days. I have known her since 1978. We have always been in touch and seems to spend time during challenging times during our lives.

"Sally, Dr. Garcia from Children's Hospital just called. It is an emergency and you have to call him right away. His number is ........." I hung up and made the call.

"Hi, this Sally Lanham, I am returning a call to a Dr. Garcia"

"Oncology, Garcia." (Can you hear my heart sinking through the earth?)

Deep breath..."This is Sally Lanham. Why are you calling me?"

"Where are you? We need you to return to the hospital immediately."
"We are at the lake." ( Mind on overdrive and nothing making sense.)
"Can we expect you in 30 minutes?" Said with a hopeful tone.
"No, we are at Lake Chelan, at least 4 hours away." (Said with terror coming from a place of deep fear.)

" Please drive directly here. Get here as soon as you can and you will need to be prepared to spend a few nights at the hospital."

"What does she have?"
" I don't want to tell you over the phone."
" You have to tell me. Are we going to do surgery? Should I keep her from eating? What is going on?"
"I don't want to tell you over the phone."
"Please, I need to know."
"She has a form of Lukemmia."
"I will see you as soon as I can."

The rest is a blur. I told the girls we had to leave. I called Belle, my parents and Thomas Kim. I called Johnny and Whitney's parents. I stuffed the stuff into the car, and then I told Mary-Elizabeth she had a blood disorder.

I cried, tried to make conversation, encouraged the girls to sleep and read. I prayed. I was running all the scenarios through my head.

They ran the gamut from: She can not possibility be sick to, will she die before I can get her home. How could I have been so stupid as to take her on vacation?

We arrived at the hospital around 1:00 p.m. They took us directly back. They had me sign some things and then the activity began. Blood draws, questions, people coming in and out. Johnny showed up and told me the doctors were wrong, she could not be sick.

Dr. Dow, age 12, came in and sat down and began and it went something like this:

"We have been trying to contact you. We drew the blood work and found that she had 26,000 white blood cells. 19,000 were what we call Blasts. They are unformed white blood cells. We are running the tests but your daughter has loochemai. There is no doubt. We need to do some other tests to determine what kind it is. That will tell us how she will be treated."

After that there was not much I comprehended. I heard words like:

Now she has 61,000
She will be treated for 2.5 years.
75% cure rate.
Oh, by the way she has a blood clot in her juggler vein.
She will not be having surgery on Friday.


You just go into shock and start making the best decisions you can.
Johnny will spend the night.
Who has to be called.
What do we need to bring from the house.

When do we do the next test, how do we survive this. How do we even comprehend this situation.

It has been so hard because she looked perfectly normal.
I simply left the hospital, and went home to bed.

I was sure she would be okay with Johnny, I was a bit worried that I had not met a single person treating her that looked older than she was. It remains a concern but I am ajusting.






ALL is not always soap.

Well, Well, Well. I am back in the office for a few moments. It feels better to be here and pretend I am doing some work. I have to learn to accept baby steps in my life.

I will start trying to catch everyone up on the past couple of weeks. Each post will be dated.

Just know that we have positive attitudes, M-E is responding with gusto to the treatment and we only have 129 weeks to go. We are on day 11 of 910 days of treatment. Oh, God, don't let me do more math for awhile.

The first 6 -9 months are the worst. I will let everyone know if she is in remission. We will have that answer by Friday for sure.

Sal

Tuesday, August 17, 2004

Friday the 13th is not our friend.

The short version:

On Friday the 13th they looked at the CBC drawn in preparation for surgery and found 26,000 white blood cells and 19,000 were "Blasts" That = Lewquimia. I will not ever learn to spell that most hated of "L" words.

We are at Children's Hospital and M-E began her Chemo yesterday. 2.5 years from now we will be going to have a really big party. End of treatment day.

E-mail me, leave a message on my cell. Call at home in about a week. E-mail Quilting_goddess@yahoo.com, 206-605-9224, home 206-707-0708. If mom answers just tell her you want to leave a message. This hospital is very difficult to get through to and it is hard to talk about all that is going on with M-E here. I can report that she has a great attitude and has had no ill effects yet. She reported the "This is WAR"

Friday, August 13, 2004

Well We are on Vacation.

We are surviving a Friday the 13th. Everyone knows I am a bit superstitious. I picked M-E up from the airport and she is taller and as brown as a button. They had a great time. I hussled her home and just wanted to do nothing at home for a bit. We had some appointments a Children's hospital. Another MRI, a meeting to sign surgery consents and then to see the anecthiogilst ( my personal way to spell this word. Of course the first guy I ran into was the hated Daniel. He tried to ignore me. Yeah, that lasted for a minute or two. Everything went like clock work. Yes, hospital food is still bad but they work harder at it. Barley Rissoto......

I have to get off this thing. I think it would be more expeditious to write this dribble while not on the internet. I might be using my hostesses long distance. Not a lot of choices over here for connections.


Tuesday, August 10, 2004

One Day Closer

For some reason the plane did not arrive in Houston as planned. They were not able to get a connecting flight. They do not arrive until Noon on Wednesday. Every time I think I have learned the," take it one day at a time lesson" I am "given and opportunity" to learn it again. Let's see where is being patient in my description of life.

I am trying to stay calm. I am failing miserably. Time to go home. A big hearing in the A.M. and then to the airport. I am hoping for some real relaxation.


Monday, August 09, 2004

They were in the Air just not soon enough

Well I just received a call from Ruth. They did not get to Houston in time to come home. They will be home tomorrow.

Oh, well. I am going to dinner with Vickie.


She will be home Soon.

Well flight 435 is in the air. They are going to be tired and sick and tired of being hot. Oh, well they will be acclimated to heat we are about to have.

I have really really missed M-E these last few days.

No the laundry is not done. No the basement is not sorted and cleaned up. No the yard is not weeded. No the ........... you get the picture. I spent a lot of time just sitting and thinking. I read a good book, I looked for another one. I slept. I tried to be sociable. I discovered that I needed some time to not have to be in charge of anything or anybody. I did go out to dinner a couple of times and even a movie. Did you know movies are $3.00 at the Crest. When did that happen.

I am ready to have my baby home. Really ready. I need to re-connect and make sure she is real. She is such a presence and has such a special spirit. We think that we provide structure for them when I realize that something happens over the years. They come into our lives and dismantle the structure of our worlds and reshape it to fit them. I can tell I have had a full re-fit. My life alone is not what it used to be. I have faith that I could rebuild my BC life ( before child) but it would take a while. I can not just step from one role to another.

Let me tell you what I do know. I know that lots of people are saying lots of good prayers and lots of positive thoughts are headed our way. I know that we will survive anything that comes our way. I also know there are a whole lot of things I don't want to have to "survive".

I went to church yesterday and lit three candles. One for M-E one for Johnny and one for me. Then I asked Mary for a bit of wisdom on how to watch your child go through difficult time. ( I will let you know if I have any incite.) Then I tried to sit down. Some person told me that the seat was taken. Now it was a completely vacant row but I was not welcome. At that juncture, I thought, well, so much for going to church and feeling better about things and stormed out. As I was driving to my office I realized how very touchy I am and that I needed to not deal with anyone. Nowwas is reasonable for a happy family to want to sit together? absolutely. Was I over reacting? of course. Was it better for me to be alone in my office for a few hours? Most certainly.

Is it okay to need some time and space, yes. I think being in church with a baptism going on would have been hard. Solitude is sometimes a good thing.

Friday, August 06, 2004

Along the Lines of "They Don't Tell You Everything"

A friend of mine dropped by yesterday. She works at a hospital. She was talking about a teenager she had been working with for the last three years. He has some type of lung disease. She recently purchased a new vehicle and had a 1991 Honda Civic. She heard he was looking for a car. She sold him the car for $200.00. Her boyfriend was angry with her because she had essentially given him the car. ( We are hoping he becomes an ex-boy friend.)

The teenager comes from a poor family and is in desperate need of a lung transplant but can not get on the list because of his family's housing and financial situation. He will die within a year or two without new lungs. Evidently the criteria for the such things as transplants is much more than the health of the patient. Sometimes I don't want to have another lesson on how life is not fair.


Thursday, August 05, 2004

Words from the Doctor

I asked the doctor how long it would take for the biopsy results to be back. See why these guys make you crazy


"They give a preliminary result immediately.
After about 3 or 4 days, the first round comes back, which sometimes makes the diagnosis.
If they need special tests to make a final diagnosis, then it can be 1 or, 2wk, or even longer if it is ‘unusual’.

You would want a couple of weeks for things to heal before any other treatment (such as steroid injection) were considered, so the pathology delay isn't usually a problem. "

I Sucommed to the Krispy Kreams

They don't fill you up. What a surprise. I did have some milk so that was almost dinner........


I did decide today that I could take some time this A.M. and just sit outside in my new garden room and read and drink some coffee. That was a good choice. It was starting to rain a bit and was very cozy. We might be spending lots of time out there. I figure that the furniture will rot but then oh well. It will take a bit of time.

I tried to buy a new purse yesterday. I sometimes fail at retail therapy. I have looked and looked and then looked some more. The world is very brown and full of fringe and big buckles. Coach bags are no longer made of leather and look like everyone else's. So what is a girl to do. I went to Nordstrom. Yes, my sister will snicker. I hate Nordies. I hate the snotty girls that try to sell you things you don't want. ( No I do not need 64 ounces of eye cream. I forgot to draw on my house line of credit.) But I did see a very nice red leather purse. Large, shiny, new leather smell. I then the women behind the counter was so busy calling "customers" on the phone, I walked away. I was very unhappy about my failure. There must be another purse out there somewhere.


Wednesday, August 04, 2004

I Want Unending Krispy Kremes

This is a strange week. No responsibilities and yet the laundry is not done. Maybe having more to do than you can do makes you do more. I did take out the garbage and did a load of towels. See, I am getting some things done.

I am going to wallow for a few more days before I have to be the one that keeps everything going forward on a constructive and positive note. Translation: I will not feel guilty for reading only People Magazine. I will not be self-critical about not having organized all the basement. I will not feel guilty if dinner is only left overs and gellato. I do get to go to Krispy Kreme at least once.

With the help of my neighbor Mike, I have created this great outdoor room where the hot tub used to be. I need to find a good book to absorb me. My friend Judy from Idaho sent me Lance Armstrong's book "Every Second Counts." I was strangely compelled to read it. I learned a lot about ADHD in adults and about the Tour D'France. He has some interesting things to say and is very positive. I had decided to hate him because he dumped his wife and three children for a rock star. I ended up liking him in the end. I am going to the bookstore for a good book at lunch.

Oh, I found the skirt that caused the melt down. It was in strange but logical place. We have too much stuff. I am considering throwing away all the spare socks and buying new ones. I need a new purse. I have spent the summer hauling around a lime green gel bag. It is dying and now I don't think I can go back to my black leather coach bag.




Monday, August 02, 2004

I Am Just Being Mean to Everyone.

My neighbor Mike asked me to be involved in a garage sale. Well it sounded like a good idea at the time. I always have these great plans. Organize all the closets, sort all the pictures and 10 years of school work. Weed the garden. Solve world hunger.......

So the day arrived. His stuff was organized, sorted, polished, marked,....You get the picture. Mine was haphazardly grabbed from the basement. Not priced, not even wiped off. I went on the offensive and yelled at him and told him if he said one thing about how my stuff looked scruffy, I was going home. (I find most men don't like to be yelled at by bossy women.)

We had the sale. I was brutal. The first guy was a dealer that wanted to spend 10 cents on a $20.00 book marked a $1.00. He received the full blast of my 6 weeks of pent up fear, frustration, anger, and disappointment. I don't think he will come visit anytime soon.
It only went downhill from there. They made me sit in a corner, read a book and would not let me talk to anyone. We made more than $350.00.