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.





Monday, May 4, 2009

May 4, 2009


I finally got a picture of Marc's bike with the Ape Hangers on them.

Here are my Lab Updates:
Day----WBC----ANC--------Hgb--------PLT---- Transfusions
6 Apr----214-----2.0----1100---------11.1----------29------------N/A
9 Apr----217-----1.1-----900---------11.6----------23------------N/A
4 May---242-----2.4----1100---------11.6---------149------------N/A

I went to the James Cancer Hospital this morning to start my third cycle of the maintenance chemotherapy. I figured I would go in early and get it over with and then go into work afterwards. BIG MISTAKE if it could go wrong this morning it did.

Traffic was terribly backed up by campus. My weight was ugh… I don't even want to say. The lab put my IV line in at my wrist even though I asked them not to because I would have to type & I would be moving it a lot. Once she got the line in it was extremely sluggish with the blood return so they kept moving the catheter around & digging it in, it was rather painful.

I had to wait 2 hours to get a room so they could administer the Dictebine only to find out they were debating on giving it to me. You see my ANC Counts have not been cooperating. Finally Dr. walker said I could get it but they are only going to administer it 4 days instead of 5. That does not break my heart any especially with Brandon having prom this Friday night.

I ended up getting to work at 12. Which I suppose is not to bad but I wanted to get in earlier. I stayed until 4:30. It has been a long day & I am tired. Needless to say I will be scheduling all other treatments in the late afternoon & take of work early it will be easier to work around.

I did find out today that I may have another infection but it is not serous. I have been having quite a bit of abdominal pain & trouble going to the restroom so we will have to see the results show if anything, they should be back in a day or two. It’s a wonder I haven't had an infection sooner with all the medications I am on.

We found out this past weekend that I am photosensitive. My face looked like a lobster Saturday night & although I did get out on my bike a little bit Saturday afternoon (& it felt great by the way) I was not out in the sun hardly at all. The redness does not last too terribly long but it is painful. This morning my face looks flush & the skin on my arms is flaky dry go figure.

To all my fellow motor cycle riders there is a big benefit this weekend for one of my Missing Link brother's Tim Glick (Shooter) if you don't have any plans it is going to be a great time http://www.missinglinkmc.net/National.html

Marc put the first coats of red on Zack's wall on Sunday; he got a little spooked because on the wall it said "Get Out" through the paint. I think one of the girls did it in hair spray it has an aerosol look to it. He said if it comes through the paint on the second coat were moving, LOL he is a mess.

The rest is all from my last post but some good resources:
It is a good practice no matter what is going on in the world (all hazards) flood, ice storms, tornados, pan flu etc. to have an emergency kit at your home. Go to http://www.ready.gov/america/makeaplan/index.html for information on making a Family Emergency Plan.

Go to http://cdc.gov/h1n1flu/index.htm for current H1N1 Flu information

Go to http://www.ohiopandemicflu.gov/ for additional information.

3 comments:

Aunt Lynn said...

Hi Sandi,
You might want to look for a big floppy hat to wear around this summer. I hope your treatments work out better for you after work. Remember Grandma could get burnt in the shade. And, don't over do it on the motorcycle, that could've been windburn. Hope Marc & the kids are doing well and Brandon & his beautiful girlfriend have a great time at the Prom. Stay strong & I love you!
Aunt Lynn

Ann said...

Your counts look good. Hope you're feeling okay with everything going on. The painting anecdote made me smile. In Marc's defense, I probably would have freaked out a bit myself. :)

Anonymous said...

Hey Sandi,

I wanted to check in because I'd heard that you had been having some problems. If you guys need anything, please give me a call 740-506-1569 and I'll help out no matter how small. Hope you're feeling better. CoachG

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!!"
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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.
~ ~ ~ ~ ~ ~ ~
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.
~ ~ ~ ~ ~ ~ ~

They call me Rooster

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