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.