Rooster's Blog: January 27, 2009

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.

Tuesday, January 27, 2009

January 27, 2009

How good it feels to be at home. The kids were all happy to see me & I them. Zack gave me a huge hug boy I needed that. Spike was up in my bed at least 3 times last night & once this morning. Marc actually picked him up & put him there when he was whining because our bed is so high he can't jump up.

I am still very sick but no fevers. I had hot & cold spells all night long followed with sever sweating. IT is daytime & I am awake doing the same thing. The sweats are bad & I have yet to get a break from it. Marc is keep a very close eye on my temperatures so far so good. My nose is also so sensitive to smells. I think the anti fungal they have me on is doing this. The anti fungal is Cephalexin, smells strongly of sulfur & I have to take it 4 times a day. I have not figured out what it is but there is something in the house irritating my nose something awful.

Marc wanted me to thank everyone that donated time for him to be able to be with me while I am sick. I have absolutely no energy it is a major effort just to get out of bed. I do not know what I would do if Marc wasn't here I am a mess. I can't think straight, I feel unsteady & dizzy all the time. It was all I could do to sit at the table with Zack last night while he read me his book for homework.

I called my RN Sue at the Chemo Clinic here in London to let her know I would be in Thursday for labs & since I don't have a PICC anymore she will not be taking care of me. I have to go to the Park Ave Building that is part of the Hospital they have a lab there so this should be an interesting adventure. Sue spoiled me with calling & telling me what my counts are & being there if I need something else.

My 5th Bone Marrow Biopsy is next Wednesday in the morning & then I see Dr. Walker in the afternoon so that is going to be a long day she may order a follow on CAT Scan to check to see if the Fungal Infection is still there. I am going to go for now may be a day or two before I update again bad weather is moving in & the kids will more than likely not have school.

Know that I am still fighting the fight & I appreciate everyones support & prayers as we battle though these stumbling blocks on my road to recovery.

5 comments:

Aunt Lynn said...: Hi Sandi,
I'm glad you're at home resting. I wonder if the fresh coat of paint in your room is what you're smelling in the house. I heard you guys are going to get dumped on tonight, sorry, but I'm glad it's not us again. I just hope it doesn't turn into ice on you guys. I'm sure the kids will enjoy a day or two at home with you after being without you for a week. And, what generous people Marc must work with to donate time to him so he can be with you, thank God for Marc & them. Poor Spike, he needs to learn how to use a step stool to get up on the bed. Our bed is kinda high off the floor & we put a step stool up for Dino, he was afraid to jump, but he watched Koda jump up & down & I'm sure he said "I can do this" cause he never would use the step stool. You keep your head up & stay strong Babe & always know you & Marc are not in this alone there are more people pulling & praying for you than you can imagine. I will call you later this week, I love you!!
Aunt Lynn; January 27, 2009 at 8:09 PM
Anonymous said...: So I've got a huge smile on my face...and tears of joy that want to roll down...girl...you are amazing! I love you! God has a hand on you Sandi..an angel in your pocket...something. I feel like Gramma! But it's true...it's that faith that is going to bring you through this standing strong...keep up the fight! <3 Amber; January 27, 2009 at 9:33 PM
Anonymous said...: Yes!! You made it home!! Oh girl...that has to be the best medicine! You take care and I will talk with you very soon! Love ya! WHOOOAH!!!! I'm so happy for you!! Kathy; January 27, 2009 at 9:54 PM
Unknown said...: hi sweetie, i hope you night was better.maybe the sweats will calm down this week. from the looks of the chart it looks like the rainbow supper was a great success.hurray!it is to bad you still won't have the good nurse at madison cty. that has been taking care of you. hopefully the lab will have good people working that will be able to get the stick the first time.the weather is terrible here.scott's car looked like a bouncing boat trying to get out the lane.i just called him and he said it 30mph even on i75.everything is closed over here,all schools even the colleges.i hope makes it back home tonight.it looks like it is even worse south of us .i just haven't been able to catch your weather yet, but i image you guys are probably in the same mess.hope you can have a good day with the kids.take it easy today.your strength will build back up,it just may take time.i will try and call you today.love you bunches.love,aunt bonnie; January 28, 2009 at 8:43 AM
Grace/Betsey said...: Hi Sweet Pea...
I'm so glad you are home!! I didn't call last night because I figured you were resting and spending what energy you had on the kids....
My cold is better, I won't be over till this weekend just for good measure....
This weather is something...I don't have to be at work till 11:30 today so at least I didn't have to deal with the early morning crap, I thank God for my garage.
I got my leave totals at work yesterday and am going to fill out the form when I get to work today to donate some time to Marc....
You guys rock, I love you both with all my hear, not to mention those great kids of yours, love them too!!
Talk to you later...
Betsey; January 28, 2009 at 9:19 AM

Post a Comment

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.
~~~~~~~
Take risks: if you win, you will be happy; if you lose, you will be wiser.
~~~~~~~
If you are never scared or embarrassed or hurt, it means you never take any chances.
~~~~~~~
Ask yourself: "What have I missed out on simply because I was too afraid of what others would think?"
~ ~ ~ ~ ~ ~ ~
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.
~ ~ ~ ~ ~ ~ ~
And in the end, it's not the years in your life that count; it's the life in your years.
~ ~ ~ ~ ~ ~ ~

How my Blog works...it's all in the archives below

The archives detail my journey through the leukemia treatments and clinical trials and a whole lot of tribulations that have lead me here which is also where I want to stay remission! My blog served as the central repository where everyone could stay informed. I did not have a Facebook back then. At first it felt weird having so much transparency but it was great therapy!

I encourage you to add your comments or feedback. You can do that by clicking on the "Comment" link at the bottom of each post. You can also read any comments left by others. When you opt to write a comment, you will be asked to choose an identity -- your Google account name (if you have one), or "Other" (giving you the opportunity to sign your name to your comment), or "Anonymous" if you choose this option please put your name at the end of your comment so I know who it is from.

My Chemo Brain has interfered with my psychic ability. I look forward to hearing from you, thanks for dropping by.

What can YOU do for Cancer Warriors all over the world?

One answer is "Roll up your Sleeve!" You might not know that as a result of my treatment, my ability to produce enough of the various blood cells that we all take for granted were severely diminished. I received many units of red blood cells for my anemia and even more units of platelets to boost my immune system. You can help replace or bolster these products by making a donation at any Blood drive location. Each time someone gets an infusion it costs just under $3,000. When someone can get the blood & blood products for free from the Red Cross versus a Plasma Center it saves quite a bit.

Did you know you can give platelet's, you can donate unidonor platelets which is where the platelets of your blood are separated and the blood is cycled back into you. This takes about 2 hours. It normally takes about 10 units of blood or 10 people to do what one person can do if just platelets are donated. Additionally, this causes less chance of a reaction to the platelets and more chance they can be used. Most people are able to give platelet donations every two weeks or so. If you donate blood, you can't donate platelets for about 4-6 weeks.

Consider Becoming a Bone Marrow Donor. I still do not have a match and if this ugly beast rears it's head and I relapse I am going to need one my only option will be to get a bone marrow or stem cell transplant or die. In that process, the bone marrow is literally killed using chemotherapy/ radiation and replaced with that of a donor.The first place we looked was my immediate family members. My sister Sharon underwent testing to see if she was a match; unfortunately, she isn't. A second source is an unrelated donor normally through the National Marrow Donor Program ("NMDP"). My Wingman Joe Drake and Kim Sandusky for the 445 AES coordinated a Bone Marrow Drive while I was in the hospital. Many people join the NMDP registry as a result of knowing someone like me and wanting to help. In order to register, you must be willing to donate for ANYONE in need along with me.

How much is a life really worth in dollars?

Who ever thinks they will really have a price tag on your head? You would not believe how unrealistic the financial burden is that is placed upon someone going through cancer treatment. I am a planner and I was so unprepared for it; but, then is anyone every really prepared for that? I have had so many friends and family ask me what they could do to help. I address this in some of my archived posts. It was really tough for me to ask for financial assistance. Marcus and I were very fortunate that we both had stable jobs with the state at the time so we had decent insurance. What I did not factor after all the co-pays and the deductibles was all of the non-covered services, not to mention every department bills separately. It all added up very quickly. How quick? I will never forget the first bill I received from the James Cancer Hospital. It was for OVER 2 MILLION buckaroos and it only included my first 6 weeks of induction chemotherapy at the hospital. That did not include the X-Rays, Dr. fees, lab tests, ect. Its crazy but I laughed when I looked at but after awhile when the kids were not around I cried really hard because I just could not believe it & I knew I still was going to have almost another 14 months of treatments still. My credit score was around 750 when I was diagnosed with AML. Needless to say that is not where it stayed. If you are reading this know that anything and everything you sent helped. We almost lost our house because I was off work so long and the prescription costs depleted anything we had saved. It was hard economic times for everyone then and it is not much better now. I worried a lot about how all of this would impact my children's future. I can tell you I will be doing everything I can to mitigate a potential relapse. It took me awhile to realize we will never pay for it all. I had a real hard time accepting that; payment plans made it possible to salvage my credit. Bone marrow biopsys and aspirations went from quarterly, to annually to we'll se with follow-up. So for my fellow Cancer Warriors don't get too hung up on the medical bills. You are never going to be able to pay for them all. Once you are through the treatment set yourself up with payment plans that you can afford to pay on for the rest of your life. just make sure they are realistic ie. keep the payments small, you will have multiple billers. For everyone else, it is my intent to continue to share my story with others and what it has taught me. There is so little information out there that is positive. My mission now is to take all this experience and all your support and pay it forward. If you would like to contribute to this cause:

Rooster's Blog

Welcome to my Blog!

Tuesday, January 27, 2009

January 27, 2009

5 comments:

Sentimental Journey

2010 Family Pics

Moments in Time

Quotes

They call me Rooster

Facebook Badge

5 Years in the rear view mirror

Vest Family 2011

Vest Family 2010

THANK YOU!

How my Blog works...it's all in the archives below

So who is this Rooster chic?

Blog Archive

Links

Followers

Leukemia? Yep been there, done that & so thankful I did not miss these moments!

3 years Post Induction Chemotherapy

What can YOU do for Cancer Warriors all over the world?

How much is a life really worth in dollars?

2010 IOMC International Party

Check out all the places in the world that people are visiting my Blog from