Tuesday, August 27, 2013

Ocean of Hope / Sarcoma Alliance

This is a special report regarding the Ocean of Hope event on Sunday, August 25th on the beach at Manhattan Beach California...all day long :).  It was freezing about 60 degrees in August...what the heck?  What happened to summer?

I have discovered a few new things at this event.  Number one...men have more hair at the beach...on their bodies and faces however not on their heads.  Just my observation...not good or bad ...just what I saw :).

 The bathrooms were surprisingly very clean! There was an attendant there the entire time.  That is amazing.

I could not do much on that day.  I felt bad.  I had just had a surgery so that I could not lift much.  Next year will be better :).

I can not imagine how these fabulous folks paddle on those boards all the way from Catalina Island to the shores of Manhattan beach.  I know they have muscles that I do not... however they also have will power that they would equate with surviving cancer for 12 years...hmm.. I would have to think about that really. 

I guess if I had a choice of surgery/and or chemo vs paddling in the ocean....I suppose I would buy the biggest wet suit that I possibly could and try the ocean paddling...for a few minutes :).  I would record it ...especially the part when the boat comes to get me and I am eternally grateful...forever.  I would paddle more to get rid of cancer :).

All we do is give them lunch after they paddle in...oh ...and yes...they get lays or laid as well...you know...like Hawaii...:)...They look beautiful.

I thank these people for raising thousands of dollars to help people like me...struggling at times with this rare cancer...looking for hope...a cure...anything to keep going.  And many times we get to keep going :).

Their paddling.. it ends at some point and they start again.  They are challenged in a great way and having fun.  Sometimes the cancer battle never ends and it is not fun.  Thanks so much for all of your efforts!  God Bless!

Thursday, August 22, 2013

Learning How to Advocate For Yourself

Yesterday I went to support group for the first time in a very long time.  I helped to start the group with the folks at Cedar Sinai Comprehensive Cancer Institute in Los Angeles.  It is a sarcoma group. It has been 5 years now...hard to believe.  There have been great victories and terrible losses as well both personal and professional.  I thought I would share thoughts dedicated to you and this group.

Learning to really care for yourself with the help of others is very difficult.  We are raised by our parents to be independent and strong.  We like to do everything and I mean everything by ourselves.  It makes us feel good.  Especially women..Moms..like to take care of everyone and everything.

Then one day something happens.  It does not have to be cancer.  And you find yourself needing lots of help with stuff.  Cooking a meal, needing a ride, combing your hair, taking a shower, making a phone call or paying a bill.  And you are lost.  Its ok to feel lost for a little while.

After feeling lost for a bit and it happens to everyone...if you say never you ...or ever you...you are either lying or this has never happened to you...yet...it will.

Here are a few tips for you to take care of yourself.  Taking the strongest role in organizing your care will make you feel better.  You do not have to do everything to do this.  Just designating a person to help you gets your life moving again.  Take as much control as you can...and let the rest go.

Give people actual jobs to do and times to help you for example,"Amy I am sorry that you are not well, how can I help you?"   Thanks Sam...what days and times are you available so that you might help me?  And what would you like to do?  I need help Thursday with a ride to the doc or Wed I need to go food shopping...any of that work for you?   My dog could use a walk on Friday...

Another one....Sam I am trying to organize my helpers for the next week.  Are to able to sit down with me and help me do that?  Then I would know that I have help this week when I need it.

Another one....Sam ...I am single and live alone.  I am looking to designate 2 people that I can really trust in case I need help in the middle of the night.  Can you be one of those people or help me contact some friends to see if they are available?  Thanks!

I could go on forever.  Being ill does not mean you are not strong, able and fabulous.  Just have to use your words differently to organize your life.

The strongest people I know are those living with chronic illness everyday.  They wake up, seize the day and often you have no clue who they are.

Thursday, August 15, 2013

August 25th Blogging from Manhattan Beach!

Live Blogging on August 25th from Manhattan Beach, California for the Sarcoma Alliance Fundraiser, Ocean of Hope.  Check it out!

I have never blogged form the beach before :)  I am over 25,000 views now!

Yay!  Thanks to all of you!  Much more info to come!

Sunday, August 11, 2013

New Healthcare Coverage is Coming

It is coming folks...new healthcare coverage and most if not all are very confused as to what is going to be happening...even the agents selling it ...they do not know everything.

Make sure that you sit down with someone that is formally certified in selling the new plans and has had plenty of experience before this!  There are lots of nooks and crannies in all of this that you will need to know.

Each state is different and each company can choose to participate in a different way...group ...individual...or both.

If you enter one of the exchanges can you get out when you choose and to what?

I am doing ok....scans next week so I am laying low :).  Do your researching with someone educated!

Tuesday, August 6, 2013


My scans are in two weeks...there is a lot of praying involved here....so join me!  I will report back in a couple of weeks.  In the mean time...I am taking my certification in the new health laws and rules.  That will be insane.  I will report back on that as well.

Wishing you all peace and health!  I am doing just fine.  I am working on my book as well....much of my blog will be in it.    No time...no time :)