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.





Thursday, September 18, 2008

September 17, 2008

News Flash: I have moved, my new room is on the 10th Floor yea the kids can come up & tomorrow night they have guitar hero in the lounge, My Room # is 1053 The new room phone number is (614) 293-5903.

My Hemoglobin is 10.4 & my Platelet Count 25. Weighed in at 168lbs, don't know how that happened I was 174 when I signed in. I am still a big girl at the moment but thought I might start keeping an eye on my weight also.

Dr. John my Floor Doc came to see me before lunch today & let me know all my visitors get to dress up like Easter Eggs - yellow gowns & purple gloves. I am currently on contact precautions. They tested me (mouths & buts every Monday on the 3rd floor whoopee) & I am a carrier of VRE - Vancomycin-Resistant Enterococcus. Enterococcus are bacteria that live in the digestive and genital tracts. They are normally benign and don't cause any problems in healthy people. Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics. VRE is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. Although VRE generally doesn't affect healthy people, anyone who comes in contact with the bacteria can become a carrier. Once you become a carrier (I am a carrier at the moment they are trying to clear me this week), you can easily spread the bacteria to friends and family. In addition, if you become a chronic carrier of VRE, you could easily become infected when you are older or in declining health. It's particular important to avoid becoming a carrier if you share a home with those at risk - the very young, the very old or the very ill. OK enough of that.

Even though I am on the contact precautions in my room, I am allowed to go out side of it with the only precaution of washing my hands when I return, go figure so I did a jail break today & went out on Campus for about a mile walk. There is a nice little spot called Mirror lake that is not to far away & the gyro stand right outside the James smells delicious at lunch time. My Doc said I do need to get out & walk when I am up to it. On my way back to the room I got a call from Molly Fitzpatrick my friend in London their electric is still out & is not expected to be back on until this Saturday! Angie Hunsinger one of my old bosses & friend also called me this afternoon she is bringing up Paula Parker & Mrs. Roush on Friday after work I think.And my Katy Putt called, man how I do miss the old days in ARN 4 between Kitchen.Chestnut & Hunter there was never a dull day. I hope to see you soon Kathy but take care of yourself first.

I know this post is long I got a lot of information tonight. Some of the results are in. They confirmed what I already know AML - M2, They were able to determine that I am FLIP 3 negative-this is a good thing they said. About the 10th day into my Chemo treatment we will have all of the chromogenyal results that will impact my prognosis.
Here is my current chemo cocktail they started at 9pm. I got a nice cup full of 7 medications at 8:30 to prep me- Ativan, Decadron & Zofron

Treatment------1234567
Cytarabine----- xxxxxxx 24/7 via IV
Daunorubicin ---xxx via IV
Etoposide -------xxx via IV

My First Sergent, Master Sergeant James Felton came up to see me last night. After a brief navigation tutiorial, I was able to talk him in to the 12th street garage parging lot, (It has parking for $2.00 if you as for the green ticket at the reception desk. He brought me a few things I really wanted in my room from my desk at work (pictures of the family). We walked down to Wendy's it is litterraly on the ground floor rightg outside the James elevator doors. He keeps me on my toes, no negativity. I got a little week a coupl of times but I blamed it on the Chemo Drugs. I think he left around midnight I could not remember I got tired so fast & could not stay awake any longer. It was a great visist.

4 comments:

bluetew said...

Sandi, we weigh exactly the same now! It made me feel so happy that you got to go on that walk and have had such nice visits. God bless you!

ben&tam said...

great to hear you are out and about.. and great to hear the kids can come see you now.. hang in there.. ben&tam

Grace/Betsey said...

Good Afternoon!!
You talked about missing the ARN 4 days, I miss ORW. Madison's Yard Day is tomorrow,I was just telling the people at Madison Correctional all about the yard days at ORW, we used to have a blast!!. Now, it's play basketball, get a burger and go sit in your cell. They don't know how to have a yard day!!

Paul and I are going to inservice tomorrow!! Then we are having dinner at my house...he's awesome!

All is well with me, Sandi it was great to hear your voice this morning, a little weak but none the less you sounded in good spirits!!

I talked with Misty today after work. She said she would go get the paint, she couldn't go tonight and I can't go tomorrow night. She has it all under control!! Marc was telling us all about why the color had to be this and that, when the hell did he become an interior decorator?!?! It was too funny!! I saw Zack, Paige and Kate. Zackie gave me a pudding as a surprise, Paige gave me a big hug and Katie was watching TV, being her quiet self. Brandon must have been at work. Marc seemed in good spirits and was looking forward to seeing you tonight.
Well, I'm done babbling, if you need me call, you know that, I love you Sweetie!!
Betsey/Grace

Unknown said...

Hi sweetie it sounds like your day was busy.I am so glad the kids can come up now,that will make you feel better.My thoughts are with you. The class is praying for you everyday.They miss Katie and hope you are doing ok.We love you bunches.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!