Welcome to my Blog!

This was originally intended for those who have AML & stumbled across my blog in their search for information or survivors. I also used this to keep in touch with the real world, my support system was vital in my recovery and I also used it to sustain some form of sanity. I am a realist, and I have learned this has been and always will be a fight for my life. The initial leukemia battle is still here in the archives for all my fellow AML Warriors. There is so much information and no one wants to tell you. If you are just starting your treatment you may not even think to ask questions just because you are so sick. Please checkout my archives but start back in September 2008 and work your way towards today. There is a lot to read and a ton of type-o's, but it is all there the good the bad and the ugly. I challenged the Doc's, I always asked questions and pushed them for answers even if I did not like them. The Docs are not used to that so if you can, I encourage you to challenge them. They need to remember that although you are very sick you are not dead! My Blog content has morphed over the years. It's all about my life experiences, definitely my opinions and the lifelong impacts of the disease that pop up from time to time. I am a Gen Xer & I have a lot to say about everything. Rarely do I hold back or turn on a sensitivity sensor. I post regularly on Facebook nowadays just because it is faster. I welcome your comments, questions or feedback.





Tuesday, November 18, 2008

November 18, 2008


I ended up getting an infusion of platelets around 1:30pm yesterday.



My RN at Madison County Hospital said that she would hate to see what my counts were if I was not taking the neupogen shots. She said the lab freaked out when my counts came back in that morning they are not used to seeing counts that low. She said they scare the hell out of her & she does not know why the James took so long yesterday to send my order for an infusion in. She said they never should have let my counts get that low over the weekend & was surprised they did not bring me in on Saturday or Sunday. After my infusion the James did not order a post infusion lab draw, which really surprised me because they have always done this after each infusion in the past. I have no idea what my platelets jumped up to, I know they had to come up some because my gums finally stopped bleeding but how much I am not sure since I have the pin head bleeds & bruises that are not going away.

It was snowing yesterday afternoon on my way home from the lab. I think we might have a white Christmas this year!


I did not sleep very well last night. Brandon put Spike in his kennel & he usually sleeps with Paige so he started whining around 11, so me & Misty both got up. I tried to go back to sleep but when I did it was real broken. Marc was tossing & turning his back was hurting & my night sweats were ridiculous. My head was sweating so much my pillow was saturated & I am sure the sheets were getting damp. I have noticed the sweats have been increasing even during the day now. I had a head ache so I took some ibuprofen & then later realized when I was looking to see what time my doctors appointment is tomorrow that it is on my list of medicines not to take in my discharge paperwork.

My tunnel vision is gone for the most part. I have regained my peripheral vision it is still a little fuzzy around the edges especially in really bright light but I can see without straining to much. Marcus is taking me to my appointment tomorrow. I am pretty sure I will be getting more blood products then.

I started searching the web for ideas for Zack's Christmas. We have the big kids covered this year, but Zack is a tougher one to crack because he wants everything. He has been looking at the "Christmas books" the Sunday adds every week & marking just about everything in sight with his green marker. I keep reminding him everyday Santa is watching & he has to be good, he keeps telling me Santa can't see him...he is at the North Pole... he is so rotten.
Zack's latest passion is setting up the Christmas decorations everyday he keeps asking if we can put them up. I am ready but Marcus is not. Between all of he decorations we normally put, which is a lot and all of Misty's Christmas decorations I keep telling Marcus it is going to look like Santa pucked Christmas at our house this year. I can't wait it is going to fun. Christmas is everyones favorite holiday in our house, you will not find a Scrooge here.

Katie was getting a cooking lesson from Misty last night, she actually did real good. She cooked 2 chickens & red potatoes. I lost the majority of my taste buds last Friday but it fades in & out, what I could taste of it was good & everyone else said it was good to. So I am happy to report she is well on her way to being a better cook than me.




I have to tell you I made one heck of a mess last night with or little green machine. I had taken an Oxy earlier for pain so I was not in a very clear state of mind. Spike had an accident & Katie was getting the green machine out to clean it but it was out of cleaning solution. SO I went to add more in & saw that the old/dirty water needed to be dumped out. Long story short I tipped it the wrong way when I pulled it out of the machine & the stuff went everywhere. It was so gross. I ended up getting it on Katie & me/ I was so flustered thank god Marcus walked in because I was ready to have a heart attack. He ended up fixing it & we got it all cleaned up but wow what a fiasco. I was not operating any heavy equipment but I guess that rule will apply to all household items...

4 comments:

Aunt Lynn said...

Hi Sandi,
What a beautiful young lady Katie has turned out to be. I'm glad she's on her way to being a better cook than you. But, as you've told me I don't think that would take much effort...lol Call the James & question them as to why they're not following the same protocol as if you were in the hospital!! Stay away from any mechanical devices except for the remote control, ok. I'm sure getting some blood products made you feel better but please take it easy and let your body recover. Take care hope tomorrow is a better day for you. I Love You!!
Aunt Lynn

Unknown said...

hi honey, katie looks like she did a good job cooking supper. she sure is growing up fast. we miss her. uncle steve gave blood again today in your name. hopefully the infusion will make your feel better.maybe your gums will stop bleeding now.i hope your christmas holidays are fantastic.i am sure zack will continue to find all kinds of ideas for santa! recheck with the james so you can know your counts.we all want to know what they are.we all love you and want you to take care of yourself.hope your day goes well tomorrow.love,aunt bonnie

Unknown said...

sweetie tell katie i love her hair.when i looked at the pictures closer i realized how pretty it was hanging down. tell her it makes her look older.love aunt bonnie

Aunt Lynn said...

Hi Sandi, Just checking in to see if you had posted anything new. Hope you're having a good day. I love & Miss You Bunches!!!

Sentimental Journey

2010 Family Pics

Moments in Time

Quotes

~~~~~~~
Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body but, rather, to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming, "WOoHOo! What a ride!!"
~~~~~~~
Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable.
~~~~~~~
Take risks: if you win, you will be happy; if you lose, you will be wiser.
~~~~~~~
If you are never scared or embarrassed or hurt, it means you never take any chances.
~~~~~~~
Ask yourself: "What have I missed out on simply because I was too afraid of what others would think?"
~ ~ ~ ~ ~ ~ ~
Be kinder than necessary, for everyone you meet is fighting some kind of battle.
~ ~ ~ ~ ~ ~ ~
I'd rather have 30 seconds of wonderful than a lifetime of nothing special.
~ ~ ~ ~ ~ ~ ~
And in the end, it's not the years in your life that count; it's the life in your years.
~ ~ ~ ~ ~ ~ ~

They call me Rooster

They call me Rooster
& Leukemia did not snuff this one!