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.





Friday, October 3, 2008

October 2, 2008

Oct 3- Happy Birthday Misty & Zack!!! (This Blog has yesterdays info that is why I dated October 2nd)

You all have been so patient We got Great News with the Bone Marrow Biopsy results: Hypocellular Bone Marrow (<5%) with no evidence of residual Acute Myeloid Leukemia.

The break down of this that is important to mention is that the Blast Cells that were 33% upon my original diagnosis are now at 1% which is outstanding!

So where do we go from here. It depends on who I talk to. I got a new Dr. today, they rotate every 2 weeks up here. Her treatment includes 3 more rounds of Chemo inpatient at the James. Of course there will be 2 to 3 weeks of time at home between treatments. My other Dr. told me If we got the Blasts down to less than 5% once my numbers were up in about 2 weeks, I would be discharged & unless I got real sick I would be able to complete the treatments out patient recovering at home. These are 2 drastically different answers so everyday I feel what they tell me is subject to change. I am anxious to hear what my outside Dr. has to say, I do not know who has the final say so on this, but the Dr. that told me the treatment could be outpatient will not be back before my discharge unless I get really sick between now & the 17th so he will not be determining my next treatment.

We will just have to wait and see no matter what for the next 6 months to a year I am going to require daily lab draws, weekly infusions & 3 more Chemo Treatments at a minimum. It is going to be a bumpy ride.


My lab draws were hemoglobin went from 8 to 10.7 with 2 infusions, My Hct went from 23 to 30.6, my White Blood Cells went from .6 to .7 & my Platelets went from 38 to 20.

My Chloride went from 111 to 108, Creatinine went from .50 to .57 & my Calcium went from 6.5 to 8.8.

Niki Lemon came up to see me at lunch time, she offered to give me a foot massage, but I wanted to go eat so we went down to the Season's Cafe & had the fish, it was pretty good. She started her new job as the Safety Engineer for the Medical Center. She gets to rewrite their Emergency Operations Plans, lucky dog. I miss being a productive member in society right about now. I have been in the hospital for about 3 weeks & it is driving me bonkers I am so bored. I know that I need to concentrate on getting better but I wish I could do a little bit of work for a distraction from all of this sometimes.

I finally made it outside for some fresh air today, I broke out my tennis shoes & my MLMC hoodie & headed to CVS. It took me for ever to find a Birthday card for Zack & Misty but I think I got some funny funny ones. I also was able to get a small pack of Thank you cards to send out to people. I haven't got out much so I had really been looking forward to getting those. I missed my Vitamin Water & they had some. I got the lemonade one it was so refreshing & really quenched my thirst. I get cotton mouth so bad from the Chemo & it really seemed to help with that. I made it down to the Hospital gift shop & was able to get Zack some birthday presents. I got him a train whistle, a foot long pen, 2 books, a snake webkinz, he likes playing on the computer so I thought he could have fun with that & a few other little things.

My stubble is falling out like crazy & it makes my head hurt, it is so sensitive down by the follicles. Angie Hunsinger got me some olive oil so I am going to try rubbing that on my head it is supposed to help. My #3 stubble is now bald in big patches all over. My hair was so thick it is taking forever to fall out.

Paula thank you for getting my Mary Kay order to Marcus so quickly, you rock!!!

I am looking forward to my weekly date with Alan & Donnie tomorrow, I talked to Alan tonight & he asked me if I wanted Chipolte again he said we can get it extra hot this time and burn the Cancer out of me, I laughed & said no as good as it was my belly can't handle it.

Marcus got my bathroom sink all hooked up last night, I guess he was having a heck of a time trying to get the pipes not to leak. I am so excited to see it.

The Swann man came to the house last night & I missed him I guess Marcus actually ordered some stuff surprisingly. For those of you who don't know I don't cook much so the Swann Man was a big source for or family dinners before Misty moved in & it is just a long running joke.

I will try to get a picture of my Bald head with Donnie & Alan's tomorrow (Alan shaved his head when we found out I got Leukemia) & well Donnie always keeps his Bald. Kim teases me when all the hair falls out we will have to put baby oil on my head & see whose shines more, mine or Donnie's.

There is a lot to be said about being positive and having a good support system & I think the results today are a true testament to that. Thank you all so much for that! We took a big step on the road to recovery & remission today, it may take awhile to get to the top but together we will get there!

10 comments:

Unknown said...

FANTASTIC I AM THRILLED. THANK GOD . I KNEW HE MADE YOU A TOUGH LADY FOR A REASON.HOPE YOU HAVE A GREAT DAY.LOVE YOU, AUNT BONNIE

Aunt Lynn said...

Morning Sandi,
That is great news!!! Happy Happy Birthday, to Zack & Misty!!! Stay strong Sandi & I'm sure the bald look will suit you just as much as the stubble look did. Have a great day and I'll be checking in on you often. I look forward to seeing all the pics of your visits. Love & Miss you, Aunt Lynn

Anonymous said...

Hi Babe, well, today I have all of the kids except Zacky home....somrthing about a broken water main at the school. Zackery is insisting that since it is my birthday to I have to go to school with him on the bus !!! ha....he is also insisting that he is three today...I can't make him understand that his birthday is Octct 3, and he is six. He's being really good this morning, he came into my room this morning and statred looking at his presents. The puppy is here and I told the kids that with so many of them here there is no reason we should miss potty calls with him. I believe they totally ignored me on that one. Like I told you last night, I'm so very happy for your great news !!!! I have to go pick up Zack's cake and a few more presents for him and then at 1330 head on over to the school to deliver his cupcakes. I will talk to you soonly...Much Love, Misty

Anonymous said...

Hi Sandi,
This is terrific news. I have been reading your blog every couple of days and I am so happy that you got this wonderful news. You are a very strong person and I know you'll come through this with flying colors. Believe me, I'm sure BPHP would like to send you something to work on...but you do have your work to do there. We all think about you and your struggle a lot, but know that you will put up the best fight!

Stacy Lender

ben&tam said...

sandi,
YAHOO!!!!!! i knew it would be good news.. i am so happy.. you cant keep a "HARD CORE BIKER CHICK"
down... heheheh i know you will go through this up comming year with the courage that you have already shown these past 3 weeks.. and by the way.. i think bald is beautiful..!! but i do think kromes baldness will be brighter and shine more then yours..lol heheh . cant wait to see you.. i am feeling so much better and bennie is anxtious to come and see you.. so hopfully this weekend..

HAPPY BIRTHDAY!!!! ZACK !! MISTY!!
WOW 6 YEARS OLD.. cant believe it..

later sis..
hugs, love
tam

Anonymous said...

Hi Sandi,

I'm happy to see the results!!! Keep up the good work. You're in my prayers.

Anonymous said...

Hi Babe, just a quick one.....the kids and I have decorated the entire house ( outside and in). Paige and I took Zack his cupcakes and juice to school, he loved it...he told his teacher that it was "Grandma's birthday to so the class sang happy birthday to us....so cute....Zack dropped his CHOCOLATE cupcake on the floor and my a sticky mess, but it is his birthday so what !!!! Ha Ha...Paige took pictures for you, I asked her how many and she said "to many", so there you go. The class also sang "the birthday song" in sign so that was pretty cool. When we left Zack said out loud for everyone to hear, Grandma, happy birthday I love you.....how sweet is that. His presents are wrapped, the cake is done ( for 20.00 bucks it looks like hell), I came home and tried to put some color on it. Granted it is a puppy cake but it was all black and white....for a 6 year old.....go figure. Will write more as the day ends......Zack will be getting off the bus in a little bit so want to be out there when he sees all of his decoration !!! Much Love, Misty Flowers are beautiful...thank you so much, you know how I love flowers !!! Thanks Babe

Anonymous said...

Great news! You're one tough cookie. My best to your family.
Judy Willets

Pixie said...

HELL YEA!!!
I knew you would get good counts!
You are the "ROOSTER" who could keep you down. I can't wait to tell Robbie.
HAPPY BIRTHDAY again Zack & Misty!
I will see ya soon!
Lu Ya Sis! Pixie & Oatmeal

Anonymous said...

Sandi,
I'm glad to read the good news. You are spot on about the positive mental attitude, it makes all the difference. Your sense of humor and support group will also help you get through the touher times. You are very much missed at the unit. Our thoughts and prayers are with you and your family. I think of you often...Jody Waring

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