Saturday, July 15, 2006

Saturday

Last night I spent a lot of time on the American Leukemia & Lymphoma Society's website reading stories of other AML patients. It was both encouraging and discouraging. A lot of people die. I learned a lot more about the disease as well, and though knowledge is a good thing it's also hard. Things like 20% survival rates can weigh heavy on the soul, even though I know that I'm not going anywhere until God is finished with me. Part of the reason AML has such a low survival rate is that it normally strikes adults over 60, so age alone increases my chances as far as statistics go. There were several stories of women who were diagnosed during or immediately after pregnancy, and I heard my story over and over again.

I cried myself to sleep. My mom was here to comfort me and pray with me. Some times I fight the demons in my head crying "Curse God and die" and screaming "It's not fair." Our life hasn't been easy in my opinion. It was just starting to get better. We were finally out of debt, our stress level had decreased and our fighting with it, we had our baby, Brandon had a good job, I loved our house, and now this. I was angry that the last night I had before being diagnosed was spent alone because my husband had to go on a business trip. I wondered why God would be so mean to do that to me, to not even give me one last night, and why I had to be here in this stupid hospital having every aspect of my life scrutinized when everyone else is home in their beds sleeping peacefully. I fought and fought last night and in my soul I still knew that God is GOOD. That He's doing this for a reason, that it's going to glorify Him, and that I can't be angry, I have to praise Him. One of my friends sent me a CD the other day and the song played over and over in my head:

I was sure by now
That You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

(Praise You In This Storm -- Casting Crowns)

Thank you for praying for me. I am so grateful that God's grace is stronger than my faith, that He understands when my heart is weak, and lifts me when I fall.

I can't remember if I've mentioned that my room, which is on the 5th floor, overlooks the hospital's helicopter pad. The nurses have commented on how much I must dislike it, because of the noise, but I actually love my room. I have a view across Stadium Drive rather than a view of the hospital's roof. Plus, the helicopters distract me, and everytime they come in (which has been every few minutes today) I remember that somebody out there just got their life slammed, and I try to always pray for them. Sometimes I see the news later that evening and find out someone died after being flown here. It's a strange connection. It is nice to be able to see people coming and going -- the other day Brandon drove by in a golf cart while on a computer delivery and I got to watch him tootle by. It made me laugh.

For some odd reason I haven't been bored out of my mind during the days. Probably because I haven't felt good enough to be bored yet. Today has been a good day again, but Brandon has been here to spend it with me, and it's gone impossibly fast. I spent quite a while this morning looking at hats and wigs. I'm not sure about the whole wig thing yet, but I found one that has potential. Unfortunately it also has a 35% restocking fee if I don't like it, so I'm giving it a lot of thought. I also discovered some people do things like henna tattoos on their heads when they lose their hair. That was one option I hadn't thought about yet. Not sure I have the pizazz to pull that one off, plus my doctors hate anything natural or organic so I don't think it would fly with them. (I can't have fresh anything...I'm beginning to crave an Outback salad like nobody's business.)

The highlight of my day today was probably my shower. I have to be unhooked from my IV and cover up my Hickman so it's a big ordeal that I don't do every day. The main reason I've been avoiding the shower, though, is that every one I've had so far in here has been cold. The water doesn't heat up and I HATE cold showers -- I reacted to my last one like an indignant cat, and cried through the whole thing because I was just so miserable. (I had a fever at the time, too, to justify myself a little more.) Today the water got hot. I praised God. And took a really long shower. :-)

Another funny occurance happened when a nurse came in with an insulin kit (?) and asked if she could prick my finger. I issued a very alarmed "WHY?!" and she said, "Haven't they been doing this everyday?" "No, they sure haven't, and I'd rather not start if that's o.k. with you." She took off -- I'm sure the doctors would have loved that one since I don't exactly clot right now. They won't even let me shave lest I knick myself.

I got to see Gary last night and he's supposed to come by again tonight. I always feel guilty about visits with him because they're risky. I'm going to wear a mask tonight, so I'll feel better about that. My white blood count is 600 today, which means I still don't have an immune system. I guess anything under 1000 is not so hot. Anyway, after realizing today that I lost a day of my life when I had the pushing 105 fever for 18 hours, and how close I was to death, I'm trying to err on the side of caution. Brandon is feeling better but he's still wearing a mask for safety reasons. I was going to go for a walk in the hall to make an attempt at rebuilding some muscle but I haven't done that yet. They say it is safe if I wear a mask, but I'm just a little germophobe these days.

Hope you all don't mind my wordy posts. I can still type at about 100 wpm, so it doesn't take long to really add up.

10 comments:

Anonymous said...

Hey Amy,
I'm glad you got hot water in your shower
I hate cold shower's too!! I am praying for you! I love you.
Lizzie :b

Meam said...

Amy, it is okay to scream at God, when you feel he has dealt you more than you truly can handle. After all he knows all, and even if we don't "say" the words, he knows we are thinking them. An honest scream to God to get his attention does a whole lot for our soul. So you go ahead and have those "loud" talks with him, he understands. You always write encouraging words for our prayers for you. God is Good! Love, Papa and Meam.

Anonymous said...

Amy,
You are so loved sweetie, and so strong. I remember sweet little Amy coming into the PHA office, and even though you are still so sweet, you have grown into such an incredible woman. I know that your faith in God will get you through this, keep up the fight and I'll continue to pray for you and your family.
Anna Beckett

Anonymous said...

Dear friend,

I love how you can still make me laugh and cry all in one breath - it's like old times. I miss you so much it hurts.

Love you,
Catherine

Anonymous said...

Amy,

I just want you to know that you are loved dearly and lifted up in prayer continous. My words are lame but my heart is with you during the rough and the pleasant times. Grace Church of Columbia loves you and we lift you up in prayer. Lynn Hensel

Natacha said...

I love reading your posts, the longer the better! I hadn't really gotten to know you that well while you and Brandon were living here so i get to see your personality through these. Plus you are so inspirational to me, you make me want to memorize more verses in the bible....they seem to really help you through the tough times and id like to be able to recite them when i need it. I have been praying a lot for you, and know many others who are.
Love always
Tacha

Anonymous said...

Amy,

I just wanted to let you know that my family is praying for you as you go through this time of refining ("How Firm a Foundation"). Also, thank you for the blog. Reading "Saturday's" post made me grateful that I was able to go to my sometimes boring job. Keep trusting in the promises you've been given!

Damon

kim said...

hey Amy, I guess th egood Lord must have sent me over to be blessed by you.

Your on the prayer list, on th eheart list, and on the bloglist so. . .I'll check back in with you.

oh! I first heard that song by Casting Crowns live and have fallen in love with it. He is always right there no matter what huh?

kim said...

sorry about all the typos. Only way I come close to 100 wpm is when I'm being as sloppy as you saw!

Lea Anne said...

My daugher ran across your blog and sent me your information. I was diagnosed with CML on June 22, 2005. I too was wondering why now myself? My kids had just moved out, we were finally going to be able to travel more. Have more money since we wouldn't have any children at home. My husband lost his job in 2003 and we had to suddenly move from Oklahoma to Texas. I was 43 and had never lived any where but Oklahoma. Then in 2005 I found out I had CML. I was angry with God that he had moved me so far from my family and the church I had known. I felt alone and isolated. I did have my husband and that is what God kept reminding. I think he has used this time to make us closer. I haven't read your whole story but will. I hope that you are doing better. I'am almost in remission but not quite. I'll keep you in my prayers and hope that things start looking better for you.
Lea Anne