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, December 11, 2008

December 11, 2008


Free Clipart


Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
1 Dec------90----3.4------2,270------10.0--------255------------N/A
2 Dec------91----4.0------3,500------10.5--------250------------N/A
3 Dec------92----5.0------4,400-------9.5--------183------------N/A
4 Dec------93----4.4------3,800-------9.2--------196------------N/A
5 Dec------94----3.5------3,400-------9.3--------170------------N/A
6 Dec------95----3.9----Unknown----9.9--------175------------N/A
8 Dec------97----2.9------2,600------9.8--------106------------N/A
11 Dec-----100---0.3----------0-------9.1---------31------------N/A

My counts are in and as you can see they are dropping, except my Hemoglobin, it is holding pretty steady on its own. My neutraphils are nonexistent at the moment, so I am on "extra super safe mode". I can't believe I hit my Nader so fast again this time. It surprises me that the neupogen shots are not giving me a boost I need, I can only imagine how fast it would have happened if I was not taking them.

My Platelets as you can see are dropping as well, it is only Thursday & I do not get labs drawn again until Monday. It is questionable if I am going to be able to make it through the weekend without a platelet infusion but I am going to try. I suspect if I can make it, by Monday they should be practically non existent. It sounds weird but I am comfortable enough with this cancer & my body that I can tell when they get to low without the lab report. There are the obvious physical signs between the bruising, the petechiae rash & bleeding gums, when it is coming I can just tell even without that, all I can say is its weird.

So I know Aunt Lynn is probably reading this & saying so why not get the infusion now if you know you are going to get that low.... Well part of me beating this cancer, is me beating this cancer. I am trying to push my body to do what it is supposed to even though it does not want to. I know I can't control these things down at the cellular level in my body, but it is my body & like me it is very stubborn. I don't want to give it more than what it needs to get the job done. For example my Hemaglobin, since I have started my consolidated chemo I have been within the parameters to receive a blood infusions & told them no I wanted to try & make it on my own & oddly enough my body complied. I never push it to a dangerous level, not to mention my Dr.s would not let me. So I am going to wait this one out & see what happens.

My vision is actually doing better this time, I was worried because I have soft white auras around everything I look at but it is not drastic like the last time.

Last night we went to Brandon's wrestling match here in London. He wrestled the 160 weight class. He was tech faulted the first match against Hillsboro & won his second match against Clinton Massi. Brandon looked real tired though, he is not in as good of shape as he used to be & it showed. Don't get me wrong there is not any fat on that kid & he is in a hell of a lot better shape than most but you can tell a difference from his 8th & 9th grade wrestling days. He wrestles tonight at Jonathan Alder & then they have a big break.

I got a phone call with wonderful news from Maj Mulhorn at my Unit yesterday. " HQ AFRC/SG has approved MSgt Golden-Vest for a "Participation Profile 4" while her treatment and worldwide duty waiver are being processed." So all you non-military people are asking so what does that mean. In it's simplest form I can start going to Drill & complete my annual tour days. My waiver expires at the end of March 2009 so they will have to re access me then. Up to this point since I was diagnosed I have not been allowed to participate even if my counts were up & I was feeling good. Maj Mulhorn said the unit is going to work with me to schedule my drill periods around my treatments & recovery periods, so this is wonderful news to me. My military career has been weighing heavily on my mind since the whole cancer thing happened so this is a big stress that has been lifted for the moment.

The other night the doorbell rang & it was a box of Cheryl Cookies from my Aunt Sue & Uncle David, Thank you! Zack was quite the little gentleman. He carried the box around to everyone (he went to Grandma/Misty first). Once everyone got a cookie only then did he get one for himself. It was too cute! So far this week has had all white days at school, no trouble, Whew!Each day after school he has his routine of taking off his coat & shoes then telling me who in his class had color changes on their chart & who got red & then he smiles real big with his big dimples showing & says I got white! He loves to show off his school papers & reads me his daily book. To be that young again, the older kids don't get excited to show us their homework, or tell us what kind of day they had.


I was able to get our Christmas cards figured out, we still have not done a family portrait so I had to get a little creative this year. With my Chemo Brain this was a major task.

I found out this morning MSgt Bill Larue from my Unit is coming home, he is a good friend & has been deployed since this summer for Operation Iraq Freedom/Operation Enduring Freedom, I am looking forward to welcoming him home.

With my Nader being in full effect I am not certain how my weekend is going to go. Marc & I still have Christmas shopping to do, there are holiday parties for Missing Link & ORW so I think we are just going to have to take it day by day & play it by ear.

So to calm all your fears because I can hear it in the comments now, I will not push myself to hard, I will take it nice & easy.

5 comments:

Anonymous said...

That Sweetheart of a little boy is the best thing you have ever accomplished in your life. Keep the home fires burning Sandi, and keep up the fight !!!!r

Aunt Lynn said...

Hey Girly
First of all I am so glad that Zack has been having all white days at school and it proves to me that he is acting out when you're in the hospital because he doesn't know how to deal with it. Poor baby, I wish I was there to help him through this as well as all of you. And, thank you for your own perspective on things cause I never thought of it like that about letting your body handling as much as it can. But, as long as you don't push it too far I'll be ok with it. And, with that said & you with no immune system why chance any trip outside your house while you're at zero? Ya know I just can't help but worry when you're that low. I'm also very happy for you that you'll be able to participate in your military events, I know how much that means to you. Well, I know you heard this coming but take it easy and don't over do it....I love you bunches!!
Aunt Lynn

Unknown said...

hi honey,i worry about your counts and germs and you going out,but as you said you know your body better than any of us and i believe you know how important it is that you get well,so i will trust your judgment. zack was being such a good host with the cookies.i hope all the kids are having good days at school.the class thinks of katie a lot.let her know that.i wish i could do more for you. i love you bunches.love aunt bonnie

Rustin & Lynn said...

Hey girl. I sure do miss our talks you know. I guess I haven't called or posted because in times like this what can you say? I'm sorry does just doesn't get it.I love you and miss you and your family. The pictures of your family around the holidays.....are to be cherished. You're STRONG girl!! You've proven that already. My thoughts and prayers are always with you and your family. Happy Holidays Sandi. You ARE going to beat this thing. Lots of love coming to you from all of us!!!

Unknown said...

hi sweetie, i hope you had a good friday.tonight was the school's christmas program.what a week ,we hope to be moved next week.direct tv is going in on monday,ready or not.this should be fun.lol hope you have a good weekend.i love you.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!