New Normal

Since my first post, I have had a rough time, medically.  I suffered a cerebral accident, a mini stroke, caused by small blood clots in the left posterior brain.  It was also discovered that I have some minor heart abnormalities, mitral valve regurgitation is one of them.  This essentially means that when my heart pumps blood out of the left valve, some slips back in.  I meet with my new cardiologist in a week to find out the final results of all the cardio work-ups!

My doctor count is currently, five.  All necessary to the continuing of my existence; primary, hematologist, cardiologist, neurologist, and gynecologist.  Well, there is the eye doctor and the dentist, and oral surgeon, but really, who's counting?

I was getting used to my "then" new normal, and a newer normal is now upon me.  While my crafting will continue, it will be at a much slower pace.  I am learning to live a very slow life.  The disease progressed far enough during the "diagnosis" phase, that it has done damage to my two major organs, brain and heart.  I live a daily regime of pills to basically keep me alive.  I live with a series of blockages in my cerebral artery, and internal carotid arteries.  Much of it makes no sense to me, all so new.  I am living with a malignant blood cancer, that tries to destroy everything in its path.

This disease, cancer, has taken my life dreams and expectations.  In the blink of an eye, it is all changed.  The career, a human rights activist, no longer able to pursue my college education due to my lack of concentration, and memory.  Criminal Justice, my love and my passion.  Two classes short of my BS in Criminal Justice, now to sit at home in my pj's with 24 hour supervision.  I want to scream, IT ISN'T FAIR, and I do, but somehow it does not help the situation.  The tears and sadness come and go, as I wade through the waters of my newness.  Laughing is my best medicine, I look for a smile every day.  I do not have to look very far with the comedians in this house.  They keep me alive.

It is time for me to come out of my "hiding" phase; the one where I pretend this does not exist, try to ignore the reality.  This cancer, a Myeloproliferative Neoplasm called Polycythemia Vera Rubra, is rare.  So rare, there are currently no cures, only medications that restore quality of life to the patient. My current treatment protocol is a chemotherapy drug called, hydroxyurea.  It is working well for me clinically, symptoms are also reduced, but I am taking this on a daily basis, and it comes with its own set of issues.  At this point, like I mentioned, my medications are keeping me alive.  Without treatment my life expectancy would be less than a year, given my other organ dysfunctions.  Even with treatment, every day is a blessing, there is no control over my body.  A feeling of falling without a net!

So, how am I going to react to all this crap?  Let it drain me of my hope and happiness, I think not!  I have been researching new options and ideas for treatment, and will be sharing that in a later post!  I am also going to launch a new advocacy campaign, to raise awareness of my disease, and raise funds to help my family pursue optional treatments that may not be covered by my insurance.  As my contribution, I will give back a portion of the funds raised to a foundation that is working diligently to find a cure for myself and others!

In all of my years of advocacy, one thing I have learned, "the squeaky wheel gets the grease".  It is one thing to live with this disease, it is another to sit silently and WAIT for a cure.

I CAN'T & I WON'T BE A SILENT SURVIVOR!  IF GOD CHOSE ME FOR THIS DESTINY, THEN I HAVE A PURPOSE TO LIVE UP TO!  I BELIEVE I CAN MAKE A DIFFERENCE FOR FUTURE GENERATIONS, IF THIS IS THE WAY, THEN I ACCEPT THE CHALLENGE!