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 13, 2008

November 12, 2008


My vision still has not improved, I called the James & they wanted me to go see an eye Dr. I was not able to get in until the afternoon, I could not drive so Marcus took me. I can honestly say it was the most intense eye exam I have ever had. Its not the Chemo Brain making me nuts, there is very visable cloudiness over both of my cornea's that is causing my tunnel vision & white out. They told me to quit the Dexamethazone eye drops & use regular eye drops & see if this helps. It could be a result from my eyes drying out so bad from the chemo. In 3-4 weeks if it is not better it could be a condition that they will take a different approach with but with my Chemo it is to soon to tell, but he said not to worry it will not make me blind...


I have to go in for lab draws first thing tomorrow. I had a good bit of chest pain all day & I have noticed today that I cannot climb the stairs without becoming seriously winded, so I know my counts are dropping fast. For the past few days I have not felt very good, so little things have been working my nerves but I had been trying not to say anything. I can't tell if it is my meds making me on edge or not but it is a delicate balance that I thought I had in check but with each day passing I am not handling it very well. I got so used to to a quite hospital room to recover & I am dealing with the real world full of life & drama now that I am home. It will get better once my counts come up, I am sure my oxygen levels are down because of the counts as well & this could be making all the difference in the world with how I am perceiving things at the moment.

I received a ton of beautiful handmade cards in the mail today from my co-workers at the Bureau of Public Health Preparedness at ODH, It is a great boost of support half way through my hospitalization treatment protocol. It sounds weird to say half way through because there is still such a long way to go but, the hospitalization portion is partially complete. Thank you so much Viola for gathering them from everyone & sending them all.

I expect 2 trips to the hospital on Thursday one for lab draws & then back for blood products in the afternoon, their protocol is less than 20 platelets & I get an infusion, when I was at the James the protocol was less than 10 so we will see what my Dr orders. Who knows I may not need them until Monday. My cousin Amber called me yesterday she was in the process of donating blood for the first time in her life that s so cool, Thank you so much Amber!!

I told you guys Spike is all legs & here is the proof, he is growing like crazy. I must admit he has been rather theraputic for me since I have been home. He just lays with me & it is real nice.


3 comments:

Aunt Lynn said...

Morning sandi, I have to ask you if light is bothering your eyes, why are you taking pictures of them? The flash of the camera isn't helping I'm sure so STOP IT!! Spike is growing like a weed, and he'll grow into those legs but will still think he's the size he is now. He's too cute & I'm glad you have him there cause I know how theraputic they can be. Get yourself set up in your bedroom and stay there, away from the drama of the real world as much as possible. You really need to focus on you & I know that's not easy for you but please do it. I hope your eyes get better as time passes. I'm glad to hear Amber was able to donate blood. I've tried to talk them into it for years. We still have snow on the ground and it sounds like we've got more coming with a bunch of wind.....yuk!! I walk dogs as part of my job and believe me it's no fun in that kind of weather!! Well, I'm praying you have good days ahead and that you don't drop too rapidly. Tale care of yourself, I love you and we'll talk soon.
Love Always
Aunt Lynn

Anonymous said...

Hi there, just to let you know J.R. and I have been keeping up on your progress thru this website. All I can say is wow what a trooper you are. Wishing you the best and our prayers are always with you. I am laughing and crying with you all the way here in Wooster. keep the spirits up and keep up the rest that you should and I know that your friends and husband are watching over you.
your friend, Charlie

Unknown said...

hi sweetie,i hope your eyes will get better each day. hopefully the regular drops will take care of the dry eye.you must take some time each day to get away to rest like you did when you were in the hospital.the daily stuff will go on whether you listen to it or not,so don't.i know that is hard. i rattle on when we are on the phone just because i like to bounce things off you and get your ideas but nothing ,no drama of the day is more important than you resting ,clearing your mind getting better.we love and want you to take care of yourself.i hope tomorrow is a better day.i love you, 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!