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.





Wednesday, November 30, 2011

November 30 2011



Man I hate needles, partly from being a pin cushion during the past three years living with AML. Some vampires were much worse than others. I think I have developed a Pavlov reaction to getting stuck that sometimes. I am now a needle wimp without some serious pre-medication action. But in weighing it all out, I wouldn't let that stop me from going back into the James Cancer Hospital and getting these Bone Marrow Biopsy’s and Bone Marrow Aspirations every quarter. Hopefully we can get to an annual schedule soon.

So what’s the dealio, how am I doing? Well as you can see in the video I am still alive and kicking, just waiting on the results. I am anticipating everything is still good. My doc still will not change my prognosis. Rats, I hate hearing that I only have a 60% chance of 5 year survivability even now. Its frustrating. I am am just as busy if not more so than I was prior to being diagnosed. I have put on a few pounds… well, maybe more than a few pounds, I am still having some respiratory issues that are hindering my physical capabilities. I am also still struggling with cognitive disconnects or chemo brain type episodes, ocular headaches and the daily does of bone and joint pain but considering it all I really can’t complain. I am luck to be alive.

So hopefully I can maintain remission and prove my doc wrong. However, if she is right it will not be a pretty road. My sister was tested to see if she is a bone marrow match and unfortunately, no match. It is very personal decision to be tested and placed in the national registry. After you watch people that are close to you die, some very quickly, others have suffered immensely, and as you watch them die you wish that there is something ... anything ... that could be done to help relieve their pain. In my case there wasn't a thing I could do, I am in the same boat. It is a very helpless, empty feeling.

There are many people in a position to make a difference for someone in a similar situation. Without a bone marrow transplant (BMT), this form of leukemia, called AML, could claim it's victim in about 3 - 5 years, possibly sooner. With life giving marrow this person's chances of a full remission (recovery -- free of cancer) can be as high as 80 - 85 percent!

I signed the back of my drivers license to be an organ donor like many others, but I'd probably have to be dead to do most of that donating. With bone marrow donation, you would replenish your marrow in about 3 weeks (and remain alive too).
Matching is much like hitting the lottery numbers. To date, of the over 2,000,000 people typed by the National Marrow Donor Program (NMDP), only around 4,300 unrelated been fortunate enough to be selected to donate. Currently only 65 percent of all people requiring bone marrow transplants can find a suitable donor. Thirty-five percent are not so lucky. The key to unlock their disease is in the bones of someone still untested. I’m just saying…

So that’s it for now, I know these posts are few & far between but facebook me, it is updated much more frequently.

2 comments:

susan said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Susan

Low Platelets Treatment and Natural Remedies

Kurt Carlson said...

Just randomly browsing through blogs and came across yours. Holy Shit, Sandy-- You are a tough woman!! I've had two bone marrow aspirates myself and I can say from experience that it's the worst kind of pain. Good luck and a thousand blessing to you and family.

Sentimental Journey

2010 Family Pics

Moments in Time

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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They call me Rooster

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