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.





Friday, September 26, 2008

September 25, 2008

My day started off real bad, I have had major trouble sleeping & I think it finally caught up with me. I felt miserable, my back was so sore & I was up about every hour to pee or move positions. Needless to say it was a very restless night & I was drained when the sun came up.

My hemoglobin is holding pretty steady it went from 11.8 to 11.4 & my White Blood Cell count was still 1.1 but we are anticipating it is going to drop even more. Even after the Platelet infusion my platelets went from 12 to 14 but then dropped all the way down to 8 so I should be getting more on the 26th, they want to hold off on giving them to me tonight so they can see if my body will make any at all. It is not uncommon but if my body is not making them they are going to send my blood to the Red Cross & have it typed even further for specific platelets. I had no idea they could do that. My Phosphorus went from 6.0 to 4.5 which is good & my Creatinine went from .57 to .58 & my sodium dropped from 134 to 133. There was a lot more labs but those are the important changes they have been watching me for.

My hands were getting really dry & my left middle finger was hurting like I burnt it & looking like it was blistering so I tried the Silky Hands from Mary Kay that Paula Parker gave me & I noticed already that it does not hurt as much & it is not near as swollen either. So I am now a believer in Mary Kay, thank you Paula!

My post was short yesterday because I felt so bad, I must say though that 2 oxycodones later & a 2 hour nap & I felt like a brand new woman. I am trying not to take the oxycodones too much because they have an addictive trait to them but I also know that if I need them I need to take them. It is a fine line.

My First Sergeant came by this afternoon, Jim Felton. He is so good to me. He picked up my FMLA & Disability paperwork to turn into ODH on Friday & was also finally able to meet Marcus for the first time. I also sent home a piece of Humming Bird cake with him from Misty. He was teasing me that he was taking applications for a new undershirt just to get me going, was supposed to be moving over to the AMXS Squadron with him after October this year & cross training to a nonflying position. There is a lot that is still up in the air with my Military career & this Leukemia is a huge inconvenience. We will sort through it all, my plan is to kick this in the but with the best case scenario & get back to normal life in about 6 months or so.

Misty made Philly steak & cheese subs, Marcus brought 2 with him last night, they were so good, no tomato soup for me. I am sure I will pay for the grease later on but it was well worth it. We hung up some more cards that I got with donation numbers from donating blood, I am up to 16 donations in my name which is wonderful & more than I ever expected. I got more cards in general as well Thank you Ruth Gerding, Beverly Larue, Sally Hunter, Katie Miller, Jeanne Stillings, Elaine Walters, Dennie & Melinda Richmond, Randy & Becky Conley & Betsy Johnson. Marcus stayed with me until about 9 last night I didn't want him to leave but I kept falling asleep on him. Thank you everyone for everything!

10 comments:

Aunt Lynn said...

Hey There Girly, Hope you're getting more comfotable. Wish I could bring you a better bed to be in. I'm sure we could come up with some egg crate or memory foam for you if they would allow someone to bring it in to you, you should ask if that would be allowed. I think I'm having sympathy back pain for you!! Hope you have a better day today, Take care, I love you too much!!!

Ruth Gerding said...

Thanks for the updates. The prayers continue. Remember, drugs are good when helping you rest. You have good judgment, and you will with your treatment needs as well.

I very much appreciate hearing your updates.

Take care,

Ruth Gerding

Grace/Betsey said...

Good Morning Sandi!!
I'm up and getting stuff done so I can come and see you today. I should be there around noon. I'll call to see what you want for lunch, or you can call me if you like. I miss you so much!! I've been making my presence minimal because I was afraid of you getting tired out.........well, that's enough of that!! You've been partying like a rock start with all your visitors!! (kidding).
I'll see you in a bit..........
xoxo
B

Thumper said...

Good morning, Hope your nights get better. I will be up the first of the week to visit. I found Sam a dress for the homecoming dance, it's blue/teal shade. I will take pictures, this may be one of the few times she will ever wear a dress. To be young again and only have the dance to stress over, (haha). I will call later to chat.

Love ya

Anonymous said...

Hi Babe, there is so much going on with you and your meds I can't keep track of what's good, bad or ugly !!! Thank God you have a medical background, the normal layman would never be able to put this stuff into words like you do. All is fine here, Spike is funny, Zackery is whinny ( I think he may not feel well ). Brandon's glasses are supposed to be here this morning. I was going to roast a chicken today but Marcus said what for, no one's going to be home.....I think he forgets that I eat every few days or so!!!!! HA...I guess it just be Zack, Kate and myself tonight so it sounds like a McDonalds night to me. I'm happy that you liked the sandwich and could eat it. Paige says "it's ALMOST as good as Donnies ! LOL...
I truely hope that your day is better than your night, Much Love, Misty

Anonymous said...

Hey woman,
I hope you are feeling better. It is FRIDAY!!!!! I am going to get drunk this weekend, do you believe that? Oh God help us(haha) Everything is ok here. We have a mobile home on hold at Springvalley trailer court. They are completely remodeling the inside. It should be done next week. I CAN'T WAIT!!!! The girls said they hope you feel better and Cecil said he is thinking about you!Love ya, mandy (Ballbreaker)

Pixie said...

Hey Rooster,
Sorry to hear ur night was so crappy. The beds aren't the best either. Hope u have better nights from here on out! I wasn't feeling the greatest last weekend, thats why we haven't been up. We will make it up this weekend, if u feel up to it let me know! Miss Ya!
Luv Ya Sis!
Pixie & Oatmeal

Anonymous said...

Hi Babe, Zack is in the shower, I know that Marucs msut be with you now, hope your day was good...God bless Betsy, she is such a wondeful perosn...must be that upbringing she had !!! Here is a message from Zack....hi mom i love u and \miss. mom....i will cssee u soon ....love zackvst

Anonymous said...

Dear Sandi,
No soup because you didn't have it, didn't want it, or couldn't get it? This whole sleeping thing has got to get solved....I wonder what the other patients are doing to get good rest....since you can't get to them maybe you can do some Morse code on the walls or knock on the pipes or something to find out:)he!he!ha! (I'm just lmao over here)But yeah, I agree with
your Aunt Lynn about let's find out what you can have and let's get it because you REALLY REALLY need good rest EVERY DAY.....so love your guts and provided no significant drama or comeaparts at my home I will be there maybe with friends, maybe just me, Wednesday. Like I said, love your guts,
love, chanie
oh yeah, are you checking out any of this debate? if not check out
cnn and listen to the craziness..

Unknown said...

hi sweetie,i hope your day went better than your night.it is so amazing that they know exactly what meds to mix together to make you better.i check each morning before school for your messages. i am always glad to read about your activities.i wish i could be there with you each day,but i would probably drive you crazy!lol love you very much sweetheart, aunt bonnie

Sentimental Journey

2010 Family Pics

Moments in Time

Quotes

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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!!"
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Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable.
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Take risks: if you win, you will be happy; if you lose, you will be wiser.
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If you are never scared or embarrassed or hurt, it means you never take any chances.
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Ask yourself: "What have I missed out on simply because I was too afraid of what others would think?"
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Be kinder than necessary, for everyone you meet is fighting some kind of battle.
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I'd rather have 30 seconds of wonderful than a lifetime of nothing special.
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And in the end, it's not the years in your life that count; it's the life in your years.
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They call me Rooster

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