Sunday, March 9, 2014

VHL Sucks

So I had Laser Surgery on January 24th to zap seven little "*hemangioblastomas". My doctor found 7 new ones but they were small and all responded well to the laser. 

Hemangioblastomas are little knots of blood vessels.  The laser cauterizes them.  It's called photocoagulation.  After the procedure, I go home and rest.  The Doctor said "no restrictions" so  I was able to run the next day. YAY!  I did notice something new this time, I had little black dots and swirls, kinda like floaters in my right eye.  But they have diminished.

They also found cateracts.  They aren't affecting my vision right now but when/or if they do, we will deal with it at that time.  Probably just old age.

I've been losing weight lately...I started a new diet in September and eliminated fast food, soda and sweets from my diet.  Adding Homemade Harveys,( when I get a sweet craving.  I eat them three times per day, they are yummy, no additives, kosher and one packet gives me 2.5 time the daily requirement of fruit.  I've lost 25 pounds.  Yay!  But since my husband has been back from his latest business trip, I've fallen off the wagon...weird thing is, I'm still losing....hmmm?  It could be all the running I've been doing.  I signed up to run my first Ultra Trail Marathon.  (that's a race more than 26.2 miles).  I wanted to challenge myself and I'm determined.  I ran 65 miles last week.  (Imagine Forrest Gump) 

Now compared to other tries at weight lost, this has been a little too easy.  ...there is a little voice in the back of my head saying I should go see the Endochronologist.  They did find cysts on my pancreas and kidneys.  I'm a bit concerned at the borderline diabetic comment on my latest labs.  We will see.

In the throws of training, and planning the 4th Annual Mom's Day Run.  Hoping for another successful year.  Raising money and awareness for VHL is the promise I made to Mom.  This is "Her Day".  I miss you mom. <3 


Next year we are gathering the troops for The Hatfield and McCoy Marathon.  It starts in Kentucky and ends in West Virginia.  Did you know that the McCoys had VHL? (  Check out the marathon here: (   We will be raising money for The VHL Alliance.  Whoohoo!

*Hemangioblastomas (capilliary hemangioblastomas) are tumors of the central nervous system that originate from the vascular system usually during middle-age. Sometimes these tumors occur in other sites such as the spinal cord and retina. They may be associated with other diseases such as polycythemia (increased blood cell count), pancreatic cysts and Von Hippel-Lindau syndrome (VHL syndrome). Hemangioblastomas are most commonly composed of stromal cells in small blood vessels and usually occur in the cerebellum, brain stem or spinal cord. They are classed as grade one tumors under the World Health Organisation's classification system.

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