Thursday, October 27, 2016

Long Time Cancer Survivorship...over 15 years

Someone said to me today......

I am no longer afraid of dying

I am no longer afraid of cancer

I hate cancer

I am afraid of never really living again

I am afraid that I will work so hard to stay here........ only to realize that I will not ever get what I really want.

That in my future are just more needles, hospitals and medical procedures.

That my family and friends will just watch me melt away......

That is what my friend in the fight said to me today.

That is what we do not really talk about....let's talk about it


Cancer Survivorship...What Happens in the Middle of the Night When We Are Alone

When we can not sleep and it is quiet......

We think about all the important family and friend things that we might miss.

If you are a long term Cancer person like me...we think about so much that we have already missed....things we would only tell each other.....

Like the time I was in the hospital when my Mom passed away.  I missed that because of Cancer.

Like the time that friend called to tell me that she only has two house payments left......

Like the time a young woman diagnosed with colon cancer in her 30's snuck into my room in the hospital to ask me for help....that was a little scary....and sad....she was all alone...

Like the Woman in her 50's in tears in the waiting room of the cancer center screaming at her sister because she was told that it was not OK to cry over is very OK

Like my friend that just found out that her medication is not approved by her insurance company ...a life saving medication.....and she can not figure out how to pay for it...other cancer people will help her..

The long time patient that can not figure out how to balance living....while we may be dying....

A few of the things that we think about...there are more.

Tuesday, October 25, 2016

Cancer Survivorship ...No Bullshit

After over 15 years the question I get asked most on a daily basis by other survivors is," How do I do this? And for so long?"   What is this?  They say Cancer!  How have you  done this  all of these years!!!  My answer is that I have not done cancer for over 15 years...ok...I have but I have not made it my whole life.....I have not made it my life.  It is not the defining factor of my life.  It has shaped my life in so many ways however it does not define who I am. 

I have some fun stories over the years and some is one of my the beginning years I had a surgery over Thanksgiving.  I sent my family away to enjoy it out of the Hospital....I was a little sad but OK.

The nursing assistant that night was a young man filled with Tattoos and earrings....he did not smile much but you could see that he was a kind person.  He did not say much either!   And I wanted to chat!  No surprise there...LOL

The evening went on and he would drop in to help me out and make sure that I was OK....I was on the latter part of my hospital stay and just could not go home yet...

Around 7pm that night he walks in with a wheel chair and says get in.....I said ok...I am always up for a ride.....

He brought me to an out side patio to see the moon and have a Thanksgiving snack....he bundled me up in blankets.  I said Thank You and told him that this was and will be one of my best Thanksgivings ever!  

And that is sometimes how we do day at a time....with excellent unexpected kindness from others!

More stories etc coming

What's in Here Since 2009? Everything

For new folks.....after 15-20 surgeries, many chemos, waking up from the dead, and then on keytruda......originally diagnosed in 2001 at the age of 44 years young....I do not know where to begin and how not to end :) read lots ....over 500 posts....

My next concentration if I can live long enough is changing the face of healthcare with some help from my friends.   The Insurance Company abuse must stop.

There is no Republican plan ....he does not understand it.   Health Savings Accounts are laughable......drawing lines....state control .....putting back competition (you can not ...its a monopoly)......Bringing back underwriting as a form of denial will kill most everyone.   They have no real plan. 

The Democrats must fix Un- Affordable Care....get rid of fraud in medicare and social security ....and change the whole system so the middle class small business owner is not paying for the program. 

My friends are dying because the Insurance Companies have lobbied all our political people enough to control your healthcare.......They pick your doctors, your chemotherapy, your meds.....your everything and we are broke because of it all.

These next 4 years is time to take back your healthcare.  Decent Affordable Care is the right of every American Citizen.

Not choosing between food and your medication......clothes, and school supplies for your kids or medication....a house to live in or chemotherapy or surgery....I can go on and on...

It is time for us to take care of ourselves and others. 

It is time for all parties to get drop the vengeance and attitude of how can I ruin your life in public office and be a person of honor and gratitude....grow up politicians....people are dying...stop lying, cheating and be a real human being.  This is why people are angry.....You did not do your job!

Monday, October 24, 2016

End of Life Discussion .....not mine General

This post is dedicated to my dear friend that asked me to write this.   She is giving a speech and needs a little encouragement ...she is brilliant and does not need me to do a thing but here it is.

The End of Life Talk is about living not dying...most people do not realize this.  The Whole Living thing is about how you are really living...everyday... and that "Talk" should never happen when you have to do should happen your whole life as you teach those around you how to live and what you would want to happen if you were not here.  It should not happen when you are really dying.  It should happen long before in living with responsibility, purpose, fun, and love. 

If you live without fear and with love ....You owe those around you a proper good bye.  You owe yourself a proper good bye.

Preparing to say good bye is different for are some general suggestions.

Please do your DNR.....make it detailed...get proper advisement.  File it with your estate planning attorney and local hospital if necessary.

Money.....Lets talk money......Trust...or Will state?   Every state is different.  Don't let anything go to probate.....this goes for your possessions as well including a house.

Under age children?   What happens to them if something happens to You? for them?

You as you for You?   Long Term Care money or Insurance? If something happens to you will you be cared for?  I could go on forever.....

Life Insurance?  Does it end at some point?  Cash Value?  Beneficiary written properly? 

I see too many seniors broke and alone due to long term care.  It is frightening.

Kelly Clarkson the singer once said in an interview....anyone that thinks it is Ok to be poor and hungry is an idiot...I agree....

It is not morbid to plan your finances and your care for you and your family in any means that you are doing "adult"  :) is a source of dignity, pride, and love for when you are not here as well.

Update on Amy and The Insane State of Healthcare

 We are at a critical impasse in our culture.  I think many of us have forgotten what President Kennedy said all of those years ago....Ask not what your country can do for you......Ask what You can do for your country....

We as able bodied (and some not so) citizens have to speak up without violence and hate to reclaim our good care.  Healthcare is a right of every American Citizen.  It is a right.  For a multitude of reasons....and there are so many on all sides...what we have now has not been working for a very long time.

As a stage 4 cancer patient for over 15 years, these are my personal and professional observations as a private citizen dealing with cancer everyday and as an advocate for myself and many other patients and families.

1.  Affordable Care failed because.....
     a.   Insurance Companies would not participate to the extent necessary to make it successful.  In other words they had the power from the very beginning to say...NO...I am not doing this because it makes me loose money.  Insurance companies are very powerful

     b.  Republicans vs Democrats.......political parties...learn to get along and get things done.  You all suck at getting along...... with your own ideals and beliefs in mind without a clue to what is really going on with your constituents.  The lobbying by Insurance Companies and Pharma is nauseating.

Special Interests and Pork Barrel Legislation......You all should be ashamed.  Its time to grow up!  I am dying more everyday!   Grow up!

All the hate and anger is coming forward because you are all doing a bad job!  Acknowledgement and apologizing is a sign of growth and adulthood :)

2.  FRAUD in Medicare to the billions and Social Security...what are we doing about this?   Why is it never discussed?  That's how to save the program. 

3.  How can we fix Healthcare?  I will wait to discuss this until after the election.

Update Amy...

I am still on Keytruda and plugging along.  Scans on Halloween :) ....We still have a long way to go to cure cancer.   There are just too many different kinds and each cancer has a different genetic make up.

I am still amazed everyday that I am still here.


Friday, September 2, 2016

September 2, 2016 Hello!!!!!

I am still here after over 15 years.......I know I need to write a book .... Every time something new happens medically.....I think what next?

Last year I woke from the dead.... Literally..... This year a new immunotherapy drug was developed called Keytruda by Merck.   I am taking it and although experiencing some side effects as of late ....I think that I will live a lot longer.   I am one of a handful of people doing this drug for Leiomyosarcoma.    I may be the cat with way more than nine lives :)

I am not sure how to recap 15 years of doing is a wave of grateful....anger ... Love .... Joy... Disappointment ...sadness.... Happiness...feeling petrified and more that changes everyday .... Perhaps every minute.

I am wiser now..... Very much wiser..... The cliche.... What I know now .... Wish I knew in around 2008..... Although doing this since 2001.... You can read here from the beginning.  Over 500 posts.

In the next few days I will write all about our healthcare system ......please come back tomorrow .

Dead Woman Living ..... Really living .... Sort of?   Let's see.    I think so.    Let's re examine the whole cancer survivor thing .....really