A Lovely Summer is winding down. In flows a rather windy, chilly but a welcomed Seattle rainy August afternoon. There should be an update posted as there has been news. Summer blew in with shockingly 2 hospitalizations, a lot of activity, a long heat wave, a pleasant once in a lifetime opportunity, some gentle progress and a visit from my donor Bruce. Recently I was in the very beginning stages with my new Heme/Onc Physician contemplating strategy for a possible return to part-time-disability work when my disability insurance company wrongfully decided to terminate my benefits due to a minor mistake in my medical records. Ironically it was coupled with information taken completely out of context by the insurance company medical staff and their severe lack of crucial and very basic medical knowledge. My benefits have indeed just been reinstated (...with no apology). But while fighting for my reinstatement, my doctor made a rather grim discovery in my DNA chromosomal results from 2 previous Bone Marrow Aspiration (BMA) test results. The Leukemia I had 8 years ago is chromosomally different than the Leukemia I had last Spring/Summer 2014. There is a significant change in the cells. And they are clueless how this could happen, only guessing it is a "parent clone cell that mutated". However, this being said, there is nothing that will change in my current management moving forward. At least for the time being.
I have progressed. Very minimally. They believe there is damage to the Stroma - the bone marrow environment - but are not sure why. My blood levels - 13 months out - have NOT returned to anywhere near normal. Not good. My last transfusions were June 5th. I presently appear to be holding my own at the moment (great)...but just. I am fatigued far more now than when I receive transfusions primarily due to the lack of robust cell recovery. The new interpretation is now: I have "Not achieved full Remission". There is simply not enough production of stem cells...nor blood cells to even determine if the Leukemia is gone or not. Nor either if I now have MDS (Myelodysplasia) again, or Aplastic Anemia. I was informed current survival rates in this situation "are 8 months". I am now 13 months out. Yay ! Really. However I was also just told I have "a poor prognosis"....
But no one has a crystal ball, Right ? Hell NO !
So, a cruel reality check... Just when I thought we were slowly moving forward. I have always thought all this Leukemia bullshit was unbelievably (and unfairly) scary, surreal, a Test.....and rather painfully inconvenient. But equally I thought that I was, am Truly Invincible. Yes the above sounds grim. And as "new" new's to me...it is. This I assure you. But I am generally doing okay. Probably far better than most under the same circumstances. I am a Warrior. Fer sure! And still strive to live my normal life with a few frustrating challenges. I still have a long way to recovery. We will continue to look for a cure. We will continue to explore returning to limited part-time work. And we will still continue to hold our breath...as long as I can. Trusting the Leukemia does not return a 3rd effin' time. Therefore,
Carry on Grasshopper....
I hope you are all Well, and truly enjoying our beautiful waning days of Summer. To Life.
Live it Boldly. Always.
K -
I have progressed. Very minimally. They believe there is damage to the Stroma - the bone marrow environment - but are not sure why. My blood levels - 13 months out - have NOT returned to anywhere near normal. Not good. My last transfusions were June 5th. I presently appear to be holding my own at the moment (great)...but just. I am fatigued far more now than when I receive transfusions primarily due to the lack of robust cell recovery. The new interpretation is now: I have "Not achieved full Remission". There is simply not enough production of stem cells...nor blood cells to even determine if the Leukemia is gone or not. Nor either if I now have MDS (Myelodysplasia) again, or Aplastic Anemia. I was informed current survival rates in this situation "are 8 months". I am now 13 months out. Yay ! Really. However I was also just told I have "a poor prognosis"....
But no one has a crystal ball, Right ? Hell NO !
So, a cruel reality check... Just when I thought we were slowly moving forward. I have always thought all this Leukemia bullshit was unbelievably (and unfairly) scary, surreal, a Test.....and rather painfully inconvenient. But equally I thought that I was, am Truly Invincible. Yes the above sounds grim. And as "new" new's to me...it is. This I assure you. But I am generally doing okay. Probably far better than most under the same circumstances. I am a Warrior. Fer sure! And still strive to live my normal life with a few frustrating challenges. I still have a long way to recovery. We will continue to look for a cure. We will continue to explore returning to limited part-time work. And we will still continue to hold our breath...as long as I can. Trusting the Leukemia does not return a 3rd effin' time. Therefore,
Carry on Grasshopper....
I hope you are all Well, and truly enjoying our beautiful waning days of Summer. To Life.
Live it Boldly. Always.
K -
