Rooster's Blog: October 10, 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.

Saturday, October 11, 2008

October 10, 2008

All my hopes of getting out this weekend were dashed away with my lab report today. It seems my neutraphils never went from 100 to 360 they went from 100 to 36. This is a huge difference that makes absolutely no sense to me. I have no understanding how my White Blood Cell count went up & my neutraphil count went down. Needless to say I did not find this out until about 4pm in the afternoon when my Nurse Practitioner came in, my Dr. never told me the Neutraphil numbers on my board were wrong so here I am thinking I am doing good & I should be going home Friday or Saturday & now who knows when so I was & still am extremely pissed off. For the record this was not from my walk because my lab numbers for today (blood was drawn at 5:30 am the morning after my walk) were hemoglobin went from 9.9 to 9.6, my Hct went from 28.3 to 27.6, my White Blood Cell count is holding at 1.2, my platelets went from 64 to 150 & my neutraphils went from 36 to 75 which is still a hell of a long way from 500.

Earlier in the afternoon I was going to go out for a walk it looked so nice out & I was going nuts waiting on the lab reports, hell maybe I could try to make it to Canal Winchester or Worthington but as fate would have it Hedi Mercer showed up outta the blue. She used to be in the 445th AES at Wright Patterson AFB with me. We visited for quite awhile she brought me some chapstick, lotion, a pretty fall pumpkin doll & a mothers legacy book to work on. We talked about old times & what were doing now. It was a nice break but reality smacked me in the face shortly after she left. I swear it feels like I am never going to get outta here.

I missed my first London MLMC Meeting tonight that was tough & tomorrow is a Carnival ride I had been looking forward to. I am starting to feel so outta touch with everything. I guess Zack was all excited when Marc went to pick him up from the park he thought I would be home but I wasn't. He even cleaned his own room. I guess all the kids had really been helping pitch in cleaning the past 2 days thinking I would be home & now everyone is bummed out. This just sucks!!

4 comments:

Anonymous said...: hI bABE, NOW THAT i HAVE MY COMPUTER AND CAN FIGURE OUT what some of buttons are for I looked up your kind of leukemia....I was very surprised that over 11 thousand people every year gets this.I'm so sorry that you are not getting released today. I know you were really looking forward to coming home. Nothing new here, thank God !!! An uneventful day is sometimes a blessing. I am fixing cinnamon rolls for the kids for breakfact if they ever decide to wake up....You are not going to believe their rooms....they moved everything around in both of them...they look really great !!! I stayed up until 0200 this morning finishing another book. Brooke was still here at 12:30 when I went to the kitchen for water....she had called her sister to come after her but for some reason the sister was realllly slow so I took her home since I was awake anyway. Brandon was a little nervous since I can't see in the dark..ha ha...I think he was really happy when we arrived back home safely. Well Babe, got to go doing whites this morning, Marcus is getting ready to go on his run and Zack has run into my room to tell me that Spike pooped in the dining room....ha ha...never ends !!! Much Love, Misty ( I just cleaned that dining room floor yesterday)...oh well such is life....; October 11, 2008 at 9:25 AM
Unknown said...: hi honey, there are no words that can console how upsetting ,pissed and sad this has made you.do they have any explanation why the numbers are not doing what we want? maybe today will bring better counts.the kids miss you a lot and this will not make them happy either.how long will this dr. that is not your favorite going to be be on duty? we all wish we could make this easier for you.i love you.love ,aunt bonnie; October 11, 2008 at 10:52 AM
Aunt Lynn said...: Sandi, I'm so sorry it didn't work out so you could go home for the weekend! Your doctor is pissing me off by not keeping you correctly informed!! It makes me want to make a phone call to the hospital and let the bitch know how inaddiquit she is being!! I'm sure my spelling is wrong on that.... oh well!! I know how much it meant to you to be at the meeting and the ride but you can make it through this and have many more rides & meetings. You & Marcus need to get ahold of the depeartment head and let them know this bitch is not doing her job!! OMG...It's a good thing I'm not in Ohio right now, I'd probably end up thrown out of the hospital & put in jail!! Well, I'm praying that you have better results over the weekend so you can get away from this BITCH!!!! Try to stay positive for your sake, I love you too much!!; October 11, 2008 at 11:02 AM
Sketch said...: Yeah Sandy, I got word about you from the unit the other day. I'm sorry to hear it. I know you will make it through as tough as it is because you have always been one to handle anything. Maybe when you get better we can get a group of us from the unit and ride sometime. I know they have tried to do something like that in the past. Sounds like it could be fun. I have been following your blog for a couple of days now and I like being able to get updates. I appreciate you doing it for those of us who can't be there. John; October 11, 2008 at 11:06 AM

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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, October 11, 2008

October 10, 2008

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