Sunday, September 21, 2014

Cancer Survivorship...I am Laughing at Cancer

I am laughing at you today...maybe someday you will kill me and maybe someday you will not.  I am laughing at you.

I am 57 years young and I have cancer all over the place...however you would never know that and my body functions for the most part like a "normal" person right now and I am fighting to save it.

I am going to try cannabis oil shortly with some other stuff that I am yesterday I went to the legal cannabis store and I was wondering if I just entered a time warp or a "Saturday Night Live" episode.

I walk in and a young man comes out with long hair down to his knees ...mid to late 20's I imagine....I told him in 5 years he will be incredibly wealthy, with short hair and driving either a BMW or Mercedes!   He laughed and knew it was going to be true.

I grew up in the 70's....hippies changing the world...and look what we did. :)  I think that I am in the wrong business!   LOL....Maybe we should all go to Colorado!

I will fill you in on how this goes....2 new posts under this one....xoxoxo

How To Save a Life...The Power of ONE

Recently I had the honor of attending the Rare Patient Advocate Summit put together by Global Genes.  I could write a book about just this however let me tell you what I learned.

Never piss off a parent when it comes to their kids.  I understand this as a parent however my heart and soul goes out to these parents in battling rare diseases that no medical professional can even diagnose!

I sat and listened to parent stories of having these incredible children that no one can help....and how they found help most times too late....and then one person started a group and then they became hundreds and then thousands trying to find a cure before another child dies.  Powerful people.

The keys I took away....

1.   The FDA is not the enemy...learn how to work it...go into the system and work it....and then change it from the inside...they are ready for change.  The government is not that big :)...if you learn how to work and stop complaining.   Complainers are negative and accomplish nothing.  Go away until you areready to make change.

2.  Make an incredible researcher your friend.  Find a doctor friend and make her or him love your disease enough to research it and cure it step at a time. 

There is more coming today....come back.

Saturday, September 20, 2014

Cancer Survivorship.....To my Family etc Live in Joy

I am leaving this open to all however you may know that I am writing to you and only you...and you and you.

I have spent a good part of these cancer years recently wandering quite a bit.  We, You, I have lived so many places...on purpose and much of it has been wonderful.  I have met and made so many wonderful friends.  I like to wander lately.

Life is built much of the time on fear....fear of living and not living enough...fear of dying too soon and then living too long.  Fear of failure and fear of success...fear of having not enough money and even having too much!    Fear of being alone and fear of being in a room with so many people and still feeling alone.  Fear of never getting it right and when you was not what you expected at all.

There is no reason to ever live in fear and yet so many of us do.  I look back on 13 years of various surgeries, chemo, and I can not believe it.  I can not believe that I actually did all of that...last year I had 4 major surgeries.  I think I hit 20 in all of these years.  I am not sure how much more traditional stuff I feel like doing and yet I do not feel that I am dying...even though I might be.  I do not think that I am  :).

So here comes the legal cannabis oil and much other alternative stuff..I will let you know how it all goes.

I know not to live in fear of much of anything...I have already done what many people would go crazy over and I am still standing and then some...all I have to do is fight for my life.  I can do that.

Do not let your life be driven by it by joy...let both sad and happy emotions feed your soul.  Do not hold back in love, work, and all else.  And I know you might not understand this until too much time has passed.  Keep going. sucks.  Open up...time is running out!

Tuesday, September 16, 2014

Cancer Survivorship...Hello and Update Amy

I must apologize for not posting for the longest time.  Beginning next week I will have a you tube channel with lots of important info for you to advocate for yourself in the medical world.

I will send a note when it is officially up and running.   If you want to see who I was and am about 9 years ago...go to and click on rare cancer.  You will see me.  I did this for them about 4 years into this over 13 year battle.....about 2005 or so.

See you on Youtube next week. :)

I am OK...trying to figure out my next move!  xoxo