I have PVNS in my right knee

I was diagnosed with PVNS of my right knee this week, 2 days before my 40th birthday.

History of my knee:
When I was 16 my knee locked up after repeatedly bending my knee while painting.  It was locked up for an hour before it was finally unlocked.  My doctor had me wear a leg brace for a week.  (I think that was excessive).  It locked up again within a year but that time I knew how to unlock it.
Fast forward to approximately 10 years ago as that is as far back as I can remember when I noticed a large bump protruding from the lower left side of my right knee.  I saw a doctor and she said, "that could be extra muscle".
In April of 2010 I returned home from the gym and my knee started swelling up.  I laid up for a week and the swelling went down.  But then in July of that same year I was mowing the lawn and noticed swelling again.  This time it didn't go down so quickly, after 2 weeks of swelling another doctor said, "take some ibuprofen".  That helped and I learned not to aggravate my knee.
Later that same year I noticed a small  hard knot in left side of my right calf, near the knee.  Suddenly whatever was going on in there burst and bled out.  I thought "blood clot straight to the heart!" and panicked.  I went to the doctor who once again shrugged and told me to ice it.  I had a huge bruise on my leg for quite a few weeks.
About a year ago I noticed the bump was moving around.  It started popping in and out of it's usual place.
And in June I got a pulled muscle in my right calf.  Nearly a month later the same muscle completely tore for no apparent reason other than simply jogging across a room for a hug.
Last fall the movement of the bump was getting to the point where if I wanted to sit down I had to manually manipulate it to be able to have full range of my knee.  Stairs no longer were easy.  I saw another doctor.  She said, "I don't know what that could be, I don't know what to tell you."
I started the process to be able to see my family doctor which I was finally able to see last month.  He also was baffled by my bump.  He sent me for xrays and to see a surgeon who claimed he couldn't see me until July at the earliest.  My doctor was able to convince the surgeon's office to see me sooner.
When I saw the surgeon he said, "more xrays."
I returned and he said, "MRI"
After the MRI he said, "Pigmented villonodular synovitis (PVNS) and you will need an arthroscopy performed."
My first one is scheduled for June 12.

What the heck is PVNS?:
When I informed friends and family a few people were skeptical, they assumed it was another made up fictitious "problem" that could be remedied through pharmaceuticals.  NOPE!  Not even close.  I became frantic to learn about this rare disorder.  The statistics I found were that 1.8 in a million get this disorder.  It starts in the lining of a joint.  Could be an elbow, wrist, shoulder, hip, ankle, but mostly effects the knee.  Only one in 10 people have been able to eradicate it through treatment which is either arthroscopy, knee surgery, and radiation therapy.  It acts like a cancer, spreading either locally or in a diffused manner (I have that).  Diffused is far more difficult to remove because if even one cell is left on the joint, it starts growing all over again.  Amputation isn't even a final option because the PVNS can regenerate at the location.  No one is immune to some type of surgery with this condition.  My surgeon claims that PVNS is spread by "trauma" of the location.  I'm assuming he means the more you use it, the more PVNS spreads.  PVNS can return as rapidly as one year and as slowly as 10 years.  PVNS can eventually cause damage to ligaments and bone causing the need for a full replacement of the joint effected.  However, PVNS can still return afterward.  I have heard of some people having multiple joint replacement surgeries.  Knee surgery alone can be a 6 month healing process.  People in their middle ages tend to discover it but children are diagnosed with it as well.  Most are misdiagnosed before they figure out what it is because most doctors have never come across it.  So far that's all the information I have uncovered up to this point.

Now what?:
Today I am crippled to the point where I have to limp.  I was able to wear a brace or wrap of some sort for several months to get some range of motion but today that doesn't even help.  I have a cane but have not been daring enough to use it.  Although there isn't much pain it is extremely uncomfortable bending my knee in the slightest.  Driving, walking, even laying down can be challenging for me.
I remember a woman telling me about her sister getting cancer.  She said that her sister had her tumor removed but didn't want radiation.  So she changed her diet.  She has been in remission ever since.  I figured, there must be something to that.  I've heard of "staving the cells".  So I'm going to try that.  A week before the surgery I'm going on a strict diet that is close to paleo but specific to foods and nutrition known to slow down the spread of foreign cells.  Until then, I'm going to eat whatever I want.
I'm also going to try treating it with acupuncture and yoga style exercises.  I'm going to be forced into an ultra healthy lifestyle.  And I'm going to have to embrace it as though my life depended on it in order to fight this horrible affliction.