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, January 22, 2009

January 22, 2009



Here are today's labs
Date------Day----WBC----ANC--------Hgb--------PLT---- Transfusions
9 Jan-----129----3.9------3800-------8.7-----------163--------------N/A
12 Jan----132----0.7-------448-------9.5-----------117--------------N/A
15 Jan---135-----0.3------0-------7.9/9.4-----------35--1 Unit of Blood
19 Jan---139-----0.2------0----------8.2-------2/35-1 Unit of Platelets
20 Jan---140-----0.2------0----------7.7---------26----2 Units of Blood
21 Jan---141-----0.3------0----------9.5----------17----------------N/A
22 Jan--142---0.7----443-----9.0----13/43---1 Unit of Platelets


The top left picture is my IV pole today, I call it my Christmas tree. The top right one is one of many PICC Blood Culture draws, they really had a hard time getting blood to draw out of it. The is a picture of the Blood Culture Bottles that they have to draw on me every 24 hours. Speaking of Blood Cultures did I mention that yesterday they blew 2 of my veins in my left hand trying to draw one of the Blood Culture tests. They had to bring another PCA in because I would not let my PCA touch me again after he started digging & blew the 2 veins. Third time is the Charm because she did get the butterfly her first try, I told here where were you 20 minutes ago when I needed you:) The 2 pictures with green scrubs & needle to skin are of the 3rd/successful draw for a Blood Culture. The other picture is the peripheral line they had to put in me to accommodate all of the antibiotics & blood products I keep getting. My IV medication list has increased daily. They are still trying to figure it out, they only know I have the blood infection, the specific type is still unknown so they cannot tailor my treatment yet.

Marc came back up again today we are still not out of the woods the stress is really waring him down. Don't get me wrong I am glad he is here by my side & I would not have been able to get out if bed for the toilet or a shower yesterday without him. I know he is up here on FMLA leave without pay right now because he ran out of leave a long time ago. Some people in the past have been very generous & donated some time to him but he has exhausted that as well. I think he is too scared not to be here right now, that there are no assurances coming from the Dr.s at this point. Until they get theses fevers under control I don't know what to do. I am starting to get even more nervous because how long can my brain keep tolerating temperatures over 103 every day, several times a day with out being damaged by it.

As you all know I have always pushed myself when I have been up to it. Well yesterday remember I said I could not get out of bed with out Marcus. Up until yesterday at 9am I have been able to move around for the most part without difficulty, maybe a little slower than normal. At 9am I tried to get up to go to the bathroom & it was like a lightning rod shot through my neck & spike when I leaned forward to start to get out of bed, because of that pain my reflex was jerking my knees in towards my chest was automatic, the pain was instantaneous in both of my calf's. I yelped & laid back because it took my breath away & started sweating profusely immediately. I had tears running down my face the pain was more severe than Labor pain. Marc kept telling me it was from not getting up & moving around enough that I need to try to get out of bed. I told him no I don't. The Nurse came & gave me some morphine for the pain & paged Carli. In the mean time it took about 7 minutes, a lot of pain & a ton of motivation from Marcus plus bore most of my weight to get me to the side of the bead & on the toilet which is about 10 feet from my bed. I was bawling like a baby.It took about the same amount of time to get me back in bed. Carli ordered an ultrasound & Doppler of my leg veins & arteries & wrote an order for the Dilaudied, because the Morphine makes me nauseous. We found that the Dilauded does not do a thing for me which from what I hear is stronger then anything I have taken to date. We had to go through all that pain again to get a shower, only to have my fever break when I got out & I instantly soaked my clean bed clothes, you could actually wring he water out. So I had to get back up & get dry clothes on. I was so wore out by the time Bonnie got here but I was so happy to see her. Bonnie was able to spend the night, she went with me down to my ultrasound to make sure I did not have blood clots causing the pain.




Bonnie & I stayed up talking until a little after 11pm when I had to take my Benadryl & I was out by 11:30pm. I woke up at 2am from a fever spike up to 103 again. They gave me 3 more Tylenol to bring my fever down. So about 4am my fever broke &my bed was soaked literally. Bonnie slept in the recliner she looked so comfy. I am so glad she came down.


Benefit Scheduled for Saturday, January 24, 2008
Many of you who know me may remember I used to be on the Board & the Treasurer for the London Assembly #208 Rainbow Girls when Katie & Paige were in Rainbow. I was contacted by Mom Wendy Hall, Mother Advisor from The London Assembly #208 Rainbow Girls & they are holding a Spaghetti Dinner Benefit for me on January 24th from 5:00 pm-7:00 pm at the Chandler Lodge located at 65 North Main Street, London Ohio. The Menu will be Spaghetti, sauce with meatballs, bread & butter, salad with dressing & a drink for $5.00. Desserts will be available for a donation & you can dine in or carryout is available. If you would like any information please contact Keith Hall @ 614-302-0431or airforcekeith@sbcglobal.net

8 comments:

Anonymous said...

I love you Sandi. I can't say much more cause I get choked up when I try to think of what to say...but I love you. You're in my prayers..and Gramma hasn't stopped yet. You're gonna beat this, I've got faith. We have to. <3 Amber

Aunt Lynn said...

Hi Sandi,
I hope your pain eases up for you, I really wish I could take it all for you. I'm glad Bonnie was able to come spend some time with you, I'm sure that was good for you both. And, yes I'm jealous too, I really wish I could come spend some time with you & your family. Who knows Dennis may hit the lottery and take care of us all. Well, I got the results of my MRI today and the spinr is not under compression, which is a good thing, but I have a lot of arthritis in the spine and a spur on my neck. So, the plan is to do some physical therapy and a couple epiderles on my lower back. So I was pleased that he wasn't reccomending surgery. Well. I hope your fever & pain gets under control soon as well as them finding out the specific type of bacteria you're dealing with. Stay strong Babe, I love you!!
Aunt Lynn

Unknown said...

hi honey, i am so glad we got to spend some time together. we probably stayed up longer then you should have,but that is just what girls do.lol you were looking better this morning,but you were looking tired again by the afternoon.i hope your dr. finally came in today. he certainly did not have personally plus last night when he was in.i know you are disappointed about not going to your fund raiser,but sent a note for one of your friends to read. they will understand.i hope they find out which drug will fight this the best.i hope the fevers stay away tonight. i love you bunches.i enjoyed last night so much,hope you did too.love, aunt bonnie

Anonymous said...

You are in my prayers every night, I know that you will beat this!! I hope that they can get your fever under control and that your pain subsides. I just wished that I lived a little closer so that I could come and talk and help out more. Take care and get some rest, Hugs, Kisses, Prayers and Wishes Lori

Anonymous said...

hey girl you are so strong i have faith that you will beat this !I pray for you and your family every day.T it one day at a time i hope you have a better night and the fevers end soon. I check on you every day.Tell mark i pray for him also i am sure this is an awful time for him but what a wonderful blessing it is to have someone you love by your side.Best wishes dear, jennifer

Ann said...

Sandi,

I'm so sorry to read about the pain and fevers. It's so frustrating having to wait on tests, especially when you feel so badly and probably just want to sleep. I'm sending healing thoughts your way and hoping the doctors figure the infection out ASAP so they can get the right cocktail of antibiotics going. You're not alone.
P.S. the steroids have done a total number on making the rest of me puffy. You should see my jelly belly and the sad state of my bum. :)

Aunt Lynn said...

Morning sandi,
Just wanted to say hi & I love you. Hope you have a better day today, less or no pain & fever. I'll check in on you later, Stay strong Babe, I love you!!
Aunt Lynn

Anonymous said...

Hi Sandi!

I am sorry you are feeling so bad. I know you will kick this in the butt. I keep you in my prayers everyday.

Paula

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.
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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.
~ ~ ~ ~ ~ ~ ~

They call me Rooster

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