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, November 6, 2008

November 6, 2008


Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
3 Nov-----62-----6.4-------4100--------11.7--------187--------- N/A
4 Nov-----63-----7.1-------5800--------11.1---------173--------- N/A
5 Nov-----64-----4.6-------4400-------11.6--------168----------N/A
6 Nov-----65-----4.9-------4600-------10.7--------144----------N/A
Is all this information making you guys crazy yet? Today has been a good day, the new regiment of the Dexamethasone injection & Zofran seem to be working well together so I do not throw up & my nausea is not near as bad thank goodness. This is my nurse giving me the Dexamethasone through my IV.I had real bad night sweats & cold chills last night but no fever so all is well.



Paula Parker came to see me today, I have talked about her visits in my blogs I finally remembered to get a picture today


My favorite Nurse Practitioner is back, Carlie Greenfield, she has been an outstanding resource for me & really has been above & beyond to ensure I am involved & at ease with my treatment.


Master Sergeant Drake came to visit me this evening & brought me lots of information, the 2008 Federal Benefits for Veterans & Dependents booklet along with points of contacts in the Cinci Offices, he also brought me an Air Force Times article from November 3, 2008 that talks about a memo that the Air Force Lt. Col James Elliot former Chief of Aeromedical Services for the 332nd Air Expeditionary Wing, was deployed to Balad at the time & co-signed a memo dated December 20, 2006 that Air Force Lt Col Darrin Curtis, former Bio environmental Flight Commander Balad wrote. It states that from the burn pits that were operating without restrictions in Balad troops may have been exposed to many highly poisonous contaminates such as aircraft fuel known to cause leukemia... It is a very interesting article. He also is taking back my signed orders from September 3rd & 4th that I was unable to turn in so I can get off the unpaid orders list. I was also very surprised when he pulled out $107 that he collected over the last UTA as well. I am truly grateful for all of the support & generosity from everyone at the 445th Aeromedical Evacuation Squadron. He was uncertain what the numbers Donors for the Wing wide Bone Marrow Donors registry over the November UTA in addition to the 64 that were registered from the Squadron Bone marrow Drive in October. He is also working with Major Sandusky to try to pull of a Blood Drive with the American Legion I believe in January. I am just amazed. For all you Airmen out there that ever questioned the necessity of the Wingman program let my situation & Master Sergeant Drake, my Wingman be a testament to you. For what he is doing, & he is not doing it alone, to help me is above & beyond what I never would have asked form him but is one more reason why we have the program & it goes to show you should all have a Wingman, because you never know when you are going to need one.
The one & only time my hair will ever be shorter than his!Me & my Wingman


There was also an interesting article in today's NY Times: " The woman at Washington University had acute myelogenous leukemia, a fast-growing cancer that affects about 13,000 people a year in the United States and kills 8,800. Its cause is not well understood. Like most cancers, it is thought to begin in a single cell, with a mutation that is not present at birth but that occurs later for some unknown reason. Generally, one mutation is not enough to cause cancer; the disease does not develop until other mutations occur.“Most of them are just these random events in the universe that add up to something horrible,” said Dr. Timothy J. Ley, a hematologist at Washington University and the director of the study.

The researchers chose to study this disease because it is severe and the treatment has not improved in decades.

“It’s one of the nastiest forms of leukemia,” Dr. Wilson said. “It’s very aggressive. It affects mostly adults, and there’s really no good treatment for it. A very large fraction of the patients eventually will die from their disease.”

Dr. Ley said, “We wanted to start studying a cancer where it would make a difference to people and their families if we could begin to unravel its genetic roots.”


The most striking part to me is how is describes AML as such a devastating disease for which we don't have very good treatments -- yipes! How lucky I am that the treatments seems to be working for me so far!!!! (Click this for the entire article if your interested.)

2 comments:

Aunt Lynn said...

Hi Sandi,
WOW, wish I had a wing man!! I'm glad you do and all the other wonderful people in your life, I am truely thankful. And, to be a little straight forward, wonder where you get it, I don't care what you read about AML you can start a new chapter that will make them all sit up and take notice! there is a first for all things. And, some things may never be explained...we do believe in miracles too!! So, since the government has admitted that they may have exposed you to the cause of this are they willing to pay for your treatment & care now? I'm really glad you had a good day and I did speak to my Dr's about Dexamethasone and what we use is a steroid, I'm wondering if it is the same thing, I would think it is and they said they had never heard of it being used in humans. Oh well as long as it's working for you! Hope you have another good day tomorrow, I love you!
Aunt Lynn

Unknown said...

hi honey,wow what a lot to take in.i read aunt lynns post and she asked exactly the same question i asked steve,i wonder if the military will pay for your care.i am so glad you have the team you like helping you thru all this right now. your wing man seems to be a big help ,you are so blessed by the many friends and supporters you have.i hope tomorrow is another good day for you.take things easy and please,please do what the drs. tell you to do .we all love you bunches.hugs and kisses.love, 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!