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.





Sunday, September 28, 2008

September 27, 2008

Dorothy McLaughlin came to visit me today today, I can't believe she braved the traffic. She made decent time getting up here after the game started but she left after 3:30ish when the game was over so I have no idea how long it took her to get home. She took me to Wendy's in the basement for lunch, it was good but I am going to have to cut back on all the grease it is tearing me up. We had a great visit I have not seen her in years & she looks great & I could not believe how much weight she had lost. She looks good! We talked about the kids, she brought her camera & I cannot get over how much they have all grown, Gabe & Zack are about a year apart & Zack is so much bigger than Gabe. Justine is more beautiful then ever but she always has been a pretty girl & her other 2 boys Jordan & Jared are getting all grown up quick. Between her 4 kids & mine it was always a major adventure & involved pizza or a cookout when we had them all together. When I get out of the hospital we will have to do it again.

I am down to 164 pounds today & very gassy :( I just want the misery to hurry up & be done they will give me some Maalox or something I am sure in a little bit) I try to put what is going on with my labs for my sister and all the other medical folks following me, I know it is all Greek to most of you so I listed my labs for today & what the ranges are for a normal person that does not have cancer. If I have any other labs that are below normal in the future that I did not post the ranges I will list their normal ranges for you there are about 17 different areas they test my blood for each day. I only post the problem areas that the Doc's are watching.

So for today my labs were as follows; Hemoglobin dropped from 10.9 to 10.1 (Normal ranges are 11.7 to 15.5) so this is not to bad.
Hct dropped from 31.3 to 28.9 (Normal Ranges are 35 to 45).
White Blood Cell count dropped from .9 to .7 (Normal ranges are 4.5 to 11.0).
Platelet count after the last infusion went to 14 but has now dropped down to 6 again (Normal ranges are 150-500)
Sodium Level went up to 133 from 132 (Normal ranges are between 136 to 145).
Creatinine dropped from .65 to .55 (Normal ranges are from .6to1.1).
Calcium dropped from 9.2 to 8.4 (Normal Ranges are from 8.6 to 10).

I am definitely keeping up & possibly increasing my medical knowledge during this stay. Today is also the 11th day since they did the first Chemo treatment. On day 14 I get another Bone Marrow Biopsy to see if the Chemo worked & put the Leukemia in remission. I still have not hit my Nader & I am nervous about this for some reason. I did start getting the mouth sores today, they are lovely. I get this magic mouth wash that is awful tasting but is chalked full of Ladocaine so for a good half hour I can't feel my teeth, tongue or lips. 4 times a day I get to drool on my self & I feel like my mouth is swollen like a baboon until it wears off. On the positive note, my hair is still in this morning.

Oh yeah and the docs put me on Norethindrone, a female hormone they are using it to stop my periods so I do not bleed to death. My gynecologist was wrong in June it was not normal for me to be bleeding like a stuck hog so if you have that problem get a second opinion before you consider the Novasure procedure. I did not have it done & I am so glad because it would have been unnecessary & I may have bleed to death during the procedure with my condition. Now let me tell you no period is a good thing for most women but this medicine has a nasty side effect it gives you acne real bad not pimples, acne so I feel like I look like a leper right now & there is nothing I can do about it.

Dad & Elaine are supposed to come see me today & I think the whole Missing Link Motorcycle Club may be coming up as well. If they do I am going to try to sneak a ride around the parking lot... we'll see. I am really looking forward to seeing everybody.

I took a nap from 3:30 to 7:00pm, that is a first. It is sooooo good to be able to sleep for more than an hour! Thank you Betsey again. I put a lot of updates on the Missing Link website yesterday so check it out if you have time I added picture slide shows to Circleville & Northwest's pages & Columbus sent me their schedule & a flyer so I updated that info & I added Wojo & Alan along with some other pictures in the London slide show.

At home there was major drama last night with homecoming, I do not have the pictures yet but will post them all when I get them. They would not let the kids in to the dance that go to London Academy. After a very heated argument with the parents, I can't believe Marcus kept his cool, I guess the cops were a foot behind him the whole time & the High School Principal refusing to budge & threw the kids out in front of all the other students. The London Academy principal came up after talking with the School District Superintendent & the kid's got to go in & that is what was important. Needless to say there is going to be a ton of parents that are going to the next school board meeting. It all ended good for the kids but unfortunately the Principal embarrassed them all in front of their peers & that is unacceptable.

Enough negativity I am going to have a good day tomorrow!

7 comments:

Grace/Betsey said...

Good Morning Sandi...
Dorothy doesn't look like she's aged a day!! How did she do that? I want the secret...
The labs look good, it's good that some are dropping, right? It's supposed to be like that till you hit your nadar, correct? I understand a little bit more since you explained it all to me when I was there Friday. It sounds like your spirits and your energy are still holding up, and you still have your hair!!! That rocks!!

I'm so sorry about the kids last night!! How horrifying for them!! I hope they managed to have a good time in spite of it all. I'm proud of Marc for not going postal, I'm pretty sure I would have. I'll have to see him today and get the scoop!!

Paul came over last night, it's the first time in about a week that we've spent more than about 15minutes together. He's been so sick, and my body is trying to decide if I'm going to come down with it, I can feel it in my throat but it hasn't gotten worse so maybe if I ignore it it'll go away, needless to say, I won't be up to see you till I make sure I'm not carrying a bug. I am however going to bring Katie up as soon as I can, she is anxious to see you.

I'll get some magazines to bring to you, let me know which one's you want. I have a couple O's and Oprah at Home. I'll get you what ever one's you want. BTW...I must has dropped the fuzzy socks while in the store, I do not have them!! I surley thought they were in the bag in my car, I'll pick up a couple pair for you. Let me know if you need anything else. I'm SOOOOOOO glad that you are sleeping better, that's awesome!

Well today is going to be a day of cleaning. The Club is going to do our part of Rt. 56 and then go ride. I need to do some serious cleaning at home..three dogs and having an additional person here really keeps me on my toes!! I gotta do something about this carpet. I'm not sure that Woody, Trish's dog is going to continue living here, she may have to make other arrangements or I'm going to have to replace the carptet when I move out!! She is not going to be very happy about this but I just don't know what else to do. It won't be pretty!!

Well, that's about it for now, I'll call you later today.
Love you!!
B

Aunt Lynn said...

Hi Sandi, glad you're getting out for a bit but please don't push yourself too much save that strength for the Nader. Why are you being let out when they don't know when you'll be hitting that point? You'll be open to infections and everything. Hope you have a great visit with your Dad & Elaine. If you can try to get them in a picture. Aunt Debe says she loves you and stay strong! Have a great day and we'll talk soon, love you bunches!!
Aunt Lynn

Anonymous said...

Hi Babe, Good Lord it's 1630 already, I don't know where the day went. After talking to you this early afternoon Kate and I returned some book, etc. I figured that since she was doing good in school I let her pick out one to bring home, hope that is not a problem with you !!!! I'm really very tired today, wish I were 42 instead of 62 on days like this one. Zackery has calmed down this afternoon, I have refused to give him anything with sugar today so it seems to be working except for the fact that he is very "bossy" and "hates me" he says...oh weel....things could be worse I guess, at least he not 17 and says he hates me....I might have a problem with that one..ha ha...I really hope you had a great visit with your Dad and what's her name, I'm sorry I forget her name. Anyway, just the fact that he is there with you must mean so much to you. Kate is upstairs reading ( good ) .....Paige is "sick" but not enough to eat 2 bowls of the Southwestern soup I made ( ha, ha ) actually, I'm glad she likes it since I had to coach her to take a bite because she hates all things tomato. Brandon is out with Brooke and her Mom to her little brothers game ( what kind I don't know )....Zack is being an ablosbute darling this afternoon, I think he knew that I was at my wits end this late morning. I am really ready for bed, I made pasta salad for Paige, meatballs for Kate, and the soup for anyone interested in eating it. Zack is going to get wgatever Zack wants and I am going to be down for the count......I can't wait for Marc to get home, I haven't even called any of my family today, or made my bed ( which is a good thing, I hate making the damned thing , you are right I am the queen of pillows). In my next life, I will never have pillows on my bad. Ha Ha....I know you are good, and I appreciate all of the people that visit you.....BUT take it easy, you must be sick or you would not be in there....GET IT !!!! Until tomorrow, Much Love, Misty

Anonymous said...

Yo!
Today was a funny sorta' day. I don't really know WHAT made the day seem...different, but it somehow was.

I noticed that everyone else was acting as if something was different too. this was a GOOD kind of different day, and I liked it...I guess.

It was when I looked back over your picture I finished, that I started to make another one. I somehow made this new one look twice as good.

Well, I guess that you're doing better, from what I hear, correct?

I'm also glad to hear you are up and walking around a lot more too! That makes me very happy!

Yet again, I'm glad you feel better!

Unknown said...

hi honey hope your visit with your dad and elaine went well.i hope to get to see you soon. it will have to a non-game day or i will get lost in the mess.so far so good , it looks like the numbers are holding pretty good.i am glad you are more comfortable and sleeping a little longer. love you much,aunt bonnie

Unknown said...

looks like you had a fun day. love aunt bonnie

ben&tam said...

sandy,
i had so much fun yesterday coming to see you.. you look great and your spirits couldnt be higher and that i love to see.. was kinda scared for you when you got on that bike but what the hell!!!(hehehe)you had fun and that is all that matters.. that oatmeal what a character!!!(i just love him!)

katrina had a freekout to see her and craigs pix on the site.. she just was like AWWWWWWWW THAT WAS SO NICE OF HER.. (dork!!heheh) but she loved it and for that i must say thank you so much..

the pix of us visiting you turned out great.. love the slideshow..

i also sent you some pix of us at the clubhouse getting ready to pick up trash. sorry some of them are a little blurry..

well i have taken enough of your time.. stay happy girl..

love ya ,tam(BERRIES)

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!