Rooster's Blog: November 4, 2008

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, November 4, 2008

November 4, 2008

This picture is from yesterday when we got into my room.

This is from the blood draws for abmission

This is when they took my PICC line dressing off to change it.

This is the new bandage afterwards.

This is Marc trying to get comfortable

This is how I feel today. I have been very slow & sluggish. This is not like me to post so late, but I had a tough round last night & this morning. They put me on Decadron eye drops which have steroids in them that are supposed to stop the Chemo from burning my eye balls.

This is the Zofram so I do not get sick...

10 minutes before they started my high dose Citerbine they gave me the Zofram to help with the nasuea but I still threw up rather violentley last night about 3 hours into the Chemo, it was horrible. I am not a graceful puker. The broght in advivan after the fact to stop it, So I thought I would be alright, no such luck a couple hours latter ole pukey came back with a vengence.
I woke up to find I have a roommate, she is from southern ohio down by Portsmouth. She also has AML & has been coughing up blood. Come to find out we were in the James together on both of our last visits. Marcus was also here when I woke up he was sitting there so quietly I did not even notice him at first. I am so glad he is here this round is tougher already.
This is a picture of the nurse bringing in my Chemo last night.

This is my Chemo tree

My poison

This is my Dr. Allison Walker & my morning nurse

They brought me my morning poison which also made me sick as a dog.

They gave me more adivan but it was too late, I was puking,

These are the morning pills they have me on so far.

I have to stay hydrated.

4 comments:

Unknown said...: hi honey, your day and night sounds terrible. i am so glad marcus is with you.he is such a good guy.uncle steve said to tell you he loves you. i wish you did not have to go thru this. i will pray for you to have a peaceful night and that these awful side affects will subside. please hang in there sweetheart.that is so easy to say from this side of the fence. you are so brave and i can not even image what going thru this is like.ilove you.love, aunt bonnie; November 5, 2008 at 12:59 AM
Aunt Lynn said...: Hi Sandi, I'm sorry it is making you so sick. I know how hard on the body it can be to vomit. I'm glad to hear you have a roomate, it may help the time go by quicker. What a beautiful young lady your doctor is!! I hope they figure something out so you're not getting sick to your stomach so much. I love you Sandi, hang in there, we're all praying for you.
Aunt Lynn; November 5, 2008 at 6:45 AM
Anonymous said...: Hey, Your pictures show how !ugh! you feel. I hope you were able to finally keep something down last night. Thats one day down, its a new day, fingers crossed it will be better today. I played Wii bowling and I am kicking some butt, once you get home we will play against the guys, show them who's #1. That game is a blast. Donnie made some of Misty soup for dinner, it was great. Hang in there, I will call today and check in on ya, as usual.Let me know if you need anything. I will stop over to the house on my way home and check on everyone for you, Zack will ask me about the Bettlejuice movie for us to watch, I have to get that. I have a movie date you know. (ha-ha); November 5, 2008 at 8:41 AM
Anonymous said...: Hi Babe, I am so sorry that you are so sick...but you know what, you have been so lucky for the past few months. You have challenged this crap and won for so so many weeks. You know, I think of your Mom all of the time and my Mother who died when she was 42, you are so lucky to have a medical problem that can be controlled, if not cured at this point in time. You just hang in there, and do everything that the doctors say you must do....that is key to this thing......stop thinking that you can control everything....because you can't Sandi!!!! I love you dearly and I have to say this, GO OBAMA.....Mcuh Love, Misty...oh, I forgot this....i have to go to the VA to get a shot that conteractives the flu shot that i got a couple of days ago.... I have been so sick with this and when I called the Va they told me that I got a flu shot in April....they were giving me so many pills and shots that I didn;t know they gave me a flu then....so I guess I have to much serum in my system.I was so concerned about you that I didn't check my records. So on it goes !!!! We all love you.....Misty; November 5, 2008 at 12:37 PM

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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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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:

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Tuesday, November 4, 2008

November 4, 2008

4 comments:

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