Rooster's Blog: January 17, 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.

Saturday, January 17, 2009

January 17, 2009

I went to Madison County Hospital yesterday & received 1 unit of Blood. We did not draw any other labs because my counts are low & the order is only for twice weekly lab draws. I am pretty certain my Platelets will be almost 0 by Monday so I had Sue, My RN go ahead and order me a Unit of Platelets for Monday morning.

I have been really weak & tired these past few days. I went with Marc to Columbus yesterday & that was a major event, I was exhausted when we got home & was in bed the rest of the night. I have virtually no energy. I was anticipating going back to my civilian employer at the beginning of February, but since mt counts are taking longer to recover & I am not tolerating the treatment as well, I think it may be closer to the end of February.

Zack got another white day on Friday, so far he has had a trouble free month WooHoo. Brandon has another wrestling meet on Monday. He spent the night at a friends house on Friday & Paige had her cheer leader friend, Olivia spend the night at our house. Zack is in love with her, they even did a mock wedding, Brandon has the video on his cell phone. Katie drew me a cool Rooster picture & has been engrossed in her DS nintendogs game.

This afternoon we plan ti take the kids to Columbus to spend their gift cards from Christmas & if I can handle it we are also going to do Katie's Birthday tonight. Misty called Zack last night & wants him to come spend the night with her tonight.

It has been unbeleavably cold here the past few days, thank goodnes for the Alpacca hat Lynn, my head would be freezing without it. Marc said he does not like the cold but he loves the changing of the seasons so he would not trade it for warmer weather. Evrybody keep warm!!!

3 comments:

Aunt Lynn said...: Hi Sandi,
I'm sorry to read that you're not tolerating this round so well. And, I'm glad to read the Alpaca hat is keeping your head warm for you. I got an update on Marc's hat yesterday & the lady messed it up and wanted to know if he would want any other color & I told her no I thought black was his choice so she's waiting on more black to be sent to her. It might be another week before his is completed. Be glad you're not living out here with me. Wednesday morning I woke up to -28, straight temp, And the wind chill was -42!!! Then Thursday morning it was -15 with a wind chill of -28 and I tell you it felt like a heat wave. Today we are at 30 above and I feel like breaking out the shorts!! They said on the news that those were the coldest temps we've had since Feb 1996. I just hope the siberian express is over with, I can't handle cold like that!! I am so proud of Zack for his stellar efforts at school. They're all good kids, you & Marc are blessed to have those 4. Just think what they could be like and no day will seem so bad. I hope the blood products they give you will give you more energy but if you're not feeling up to anything just relax and stay in bed for awhile. There's nothing wrong with you pampering yourself Sandi. And, as far as your work goes it will be there when you're able to return so don't push yourself too hard, ok. Well, you all take care & stay warm too. I love you all.
Aunt Lunn; January 17, 2009 at 10:45 AM
Unknown said...: hi sweetie, i hope your blood products helped you to gain some energy.you should take it easy in the cold.try not to push yourself with the work stuff. it will come soon enough.right now focus on your best interest and on enjoying time with the kids.let them do their shopping this weekend and just relax.enjoy the quiet moments with them also,those are important for them.just being together is enough.this cold stinks.scotts car has not started since thursday.i took him in on thrusday,then my car wouldn't start friday,so steve took him in and he had to stay at lisa's till steve got off at 11.today my car still won't start.oh well that's winter for you.you would think i'd get more done while i am home , but i've been working on renewing my hair license and i fall asleep reading the chapters. i better get started today and get it done. love you take care. love you.love, aunt bonnie; January 17, 2009 at 3:56 PM
Dave Kaat said...: Hi, I just found your blog this morning - sorry to hear what you are going through - we are familiar with this roller-coaster ride of uncertainty.

Our 2.5 year old son just finally made it to remission (again) after his AML relapse. We had many rounds of chemo and a BMT - and sent home with only weeks to live this July. Now it's six months later and remission!!! (thanks to God and herbal remedies).

We documented all the supplements we used to reduce symptoms and stimulate his immune system on www.jaymun.com

I will say some prayers for you - God bless - and email any time if you want to talk.; January 18, 2009 at 2:01 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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Saturday, January 17, 2009

January 17, 2009

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