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.





Saturday, January 31, 2009

January 31, 2009

I woke up this morning with a pounding headache & it has not went away all day. My night sweats & chills were real bad last night. I keep taking my temperature but it keeps reading normal. I think the broken sleep throughout the nights is starting to catch up with me. I have not been out of bed much at all today.

Paige had her friend Oliva spend the night last night, Zack swears that Olivia is his girlfriend, I don't think he gave them to much peace. Katie spent the night over at her friends house. Brandon did not get home last night until real late, he lost his first match & won his second. Early this morning he lost his match so since it is a double elimination tournament he is out & has to watch everybody else the rest of the day. Marc headed off to Columbus a little bit ago with Benny so for now it is just me & Zack hanging out & he is being a real sweetheart, he is watching Inspector Gadget in my bed now. He is a totally different kid when he is the only one in the house.

My 5th Bone Marrow Biopsy is this Wednesday morning followed by an afternoon appointment with my Dr. I am anticipating since the 4th Bone Marrow Biopsy came back at 1% Blast Cells that this one will be the same or 0% since the chemotherapy has continued non stop. If this confuses anyone what started this all was my first two Bone Marrow Biopsy's came back with 33% Blast cells in my Bone Marrow & 34% Blast Cells in my perepherial blood. My type of Leukemia, AML, is defined by the presence of >30% Blast Cells in the bone marrow. At this stage of the game with my treatment anything over 5% Blast Cells is not good & we have to re-evaluate & possibly start all over again. This is obviously worse case scenario next to me getting sick again. We won't get the results back from the biopsy for a few weeks but I anticipate that they will be 1% or less so we can press forward with the Decitabine, Maintenance Chemotherapy treatment.

Here are some of the pictures from the kids sledding down at the Missing Link Property. Katie although very apprehensive at first about going seemed to genuinely enjoy herself.
This was Zack's first time sledding & he absolutely loved it.
Brandon was not content with the big hill he had to make a ramp at the bottom to get some air with his snow board.
Paige was the first one down a hill & for hot chocolate.
Then there is the biggest kid of them all, Marcus!

I have a lot more pictures but I will try to upload them all into a slide show & post it on the Blog later.



The 445 Aeromedical Evacuation Squadron is hosting a Bl00d Drive in honor of MSgt. Sandi Golden-Vest on Saturday, Feb 7, 2009 from 8:00am-1:00pm.

Site: American Legion Post 526
526 Legion Lane
Fairborn, OH 45324
Site phone: 878-3831

Contact on Arrival: Major Kimm Sandusky (1-513-678-2715 ) MSgt Joseph
Drake (George Copfer, Post Commander )

While you are waiting you can become a Bone Marrow Donor as well, no appointment is necessary for this & there is no cost associated becoming a registered Bone Marrow Donor on this date at this location.

Beginning registration for the blood drive is 8:00am. Appointments are recommended; blood donors are asked to make an appointment by going to our website: www.donortime.com click on Find a Drive and use sponsor code: 986 Last Registration: 12:50pm
***Community Blood Center will provide juice and cookies and a t-shirt to all
blood donors.

4 comments:

Aunt Lynn said...

Hi Sandi,
Did you start those shots yet? neupigen?? I'm wondering if that's why your head is hurting. I hope you get some relief soon. Looking at those pictures reminds me of us as kids sledding at Lincoln Park, the neihbors mom would always send a thermos of hot chocolate for us too. Those kids, including the big one(Marc), will have fond memories of these times. You couldn't pay me to do those type things these day though. Dennis' family is big into winter activities too. I'm off to have supper with my in-laws so you rest as much as you can. I love you Sandi hope you feel better soon.
Aunt Lynn

Ian said...

Hi Sandi:

I'm praying for you and am sure you will have no blast cells in your biopsy. I can remember Janice having one real pounding headache but it was when they gave her estrogen. I think you're doing great!

Ian

Anonymous said...

Hey,
I hope your headache goes away and that you feel better soon, I love the pictures of the kids in the snow. Take care Betty

Ann said...

Sorry to hear that you're not feeling well. Try to get some rest and do as little as possible. I have a doctor's appointment the same day as you, so I'll be thinking of you and hoping that you have 0% blasts. Keep fighting!

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.
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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!