Thursday, December 29, 2016

Cancer Survivor....Happy New Year 20166

Talk with you all next year!   May love and hope guide You all the days of your life....

I read something the other day on Facebook about grief...

A person stated that grief is love with no place to go......find a place to bring new love and joy into your life.

New activities...whatever it takes to find joy, love, fun, and hope!

Don't give up!!

Saturday, December 24, 2016

Cancer Survivor.....End of 2016 Thoughtful Post

Its December 24th.  Both Chanukah and Christmas Eve....and I am including every other holiday.   Cancer does not know color, race, or politics. 

All Cancer survivors of all ages, from everywhere ....I wish you this in 2016.....

I wish you life on your own terms.  Cancer can gobble you up and spit you out.  Having leiomyosarcoma for over 15 years I can spot a person living in cancer in a second.....even those folks that do not have it anymore.  They never move forward.  They live in fear. And in some cases they never tell anyone.   Their lives are just overcome with the past.   Don't be that person.   Don't live in a place where there is no peace and joy.  Do not let cancer gobble you up and spit you out.

Cancer kills enough people and sends them to heaven.....don't let cancer kill you while you are still alive.   Don't give it the power that it does not deserve.

Everyday I ask people ....who were you before cancer?   What is it that you from your life that you want to keep and what is it that you would like to throw away?   What do you want to become?  Is there anything that you can do for yourself and for others?

Cancer get cancer once and change your whole life...I understand that.....then you can be kind of Woo Woo about it....almost happy about it.....Long Term Cancer is different.  Constant surgeries....chemo....radiation...etc is different.  Years of cancer and more years of cancer is different.

The three big subjects in Long Term Illness are treatment, money, and relationships with family and friends.   Its not easy when you may never feel like your old self.

I will discuss all of this more in 2017

For now remember who you are!  Write it down.  Make some realistic goals small or large.

Live in this life however you can.   Seek to reinvent yourself!  Move forward in fear, joy, love and strength.  Do not let cancer win.   Just don't.

Thursday, December 22, 2016

Cancer Survivor...How To Pick a Treatment Part two...please read prior post

I am searching for a treatment and you are.....Eeeeni...Meenieiiii...Miniii...Moe?  No ....that is not how to do this although this is exactly how we feel on a daily basis.....there is no guarantee of anything....tumors are are petrified ..but not....but you are.....You are doing this so damn long that you know both good and bad stuff happens to everyone.....

You are 59 and remembering that your Dad died at 79 and so did your 79...they really wanted to be 80 but could not hang on......and I want to be 60....that 9 thing......that is scary ...and life is just coo coo sometimes!  I will not be in the 9 club.....

My choices are a trial ...not yet....that might 2nd choice at this point....I used to be so against radiation....You are poisoning your body!  Do not do it.....and yet I have done well with SBRT radiation and going to start more shortly.....its amazing what a person will do to stay here on this Earth.....and I am going back to traditional chemo for now.....I get to keep my hair...nice I will still look most tell me for now....I would gladly be bald forever to be cancer is only hair however I do know many feel differently.   And that is OK!

To list basic choices for those searching for life.....

You can get drugs on compassionate use like I did with Keytruda.  Sad that did not work for me...

You have clinical trials...phase l......phase ll....and phase lll

Trials can give you a drug or a placebo.

Remember that the first 2 phases are not for You......they are for the drug company and the doctor doing the trial.....Their rules...You follow...

Phase lll's are hard to find ...they are usually the best.

Talk to other folks in your shoes...what are they doing or even thinking of doing.....In cancer do not be must communicate with other people like you to know what may come next for you......doctors do not know everything......

Your body ....YOU know it one else.

Saturday, December 17, 2016

Cancer Survivor....How To Make a Treatment Decision...when there is None...Part 1

You have cancer everyday and it is never going away again....never ever....and you are searching for a miracle....the miracle is not a cure is just stability at how your body is working you do not grow one more cancer cell......that might alter your way of life...Today..

You can live just like this forever....with this healthy, unhealthy can do it can push yourself just a little everyday to hide your illness so that everyone thinks that you are still OK....for Today.....just Today

But on the inside you are screaming......You are screaming more day!   One more!

Everyday there is a sign.....a new pain.....a different breathe....a food you can no longer eat...and you are screaming on the inside....because you know and you can not tell anyone....

And You are searching for trials and drugs on compassionate use....looking for hope and a miracle....while everyone says how fabulous You look.   You look fabulous.   And when you really want to talk with a person about very real ideas and thoughts....its too much for them and they tell you No.....that this is a conversation that they just can not handle......and you understand only because You know that someday the person will be in the place that you are now.....and You can feel their Your Soul...

I am not done trying to stay here but I have decisions to make on drugs etc...with no answer on any of them.....the stats are low on success, however I never discount a miracle...I have had many these 15 years.  Looking at trials as do I decide ....this is how I do it...

I look very personally at my own body and how I have survived all of these years....Cancer is so very smart....there are so many different kinds with millions of different treatments so in the next post I will discuss in detail.

Tuesday, December 13, 2016

Cancer Survivor.....How to help a Patient over the Holidays...and always!

This post is written at the request of a friend.  I get a lot of questions from Survivors all of the time about Life and Death....from families and are some suggestions on how to help someone over the holidays and in general!

Ask the person!!!!!! a patient of over 15 years I can't tell you how many wonderful things that people have bought for me that I do not need or can not use!!!!   And I can not exchange or return.....

For example of myself and stories of others......

Someone bought a restaurant gift certificate for a friend in need of actually everyday food in their home....he had an abdominal expensive meal and food the person could not eat was the last thing that this person needed.  Please ask your friend what he needs!

People will often buy gifts that they want for a person recovering.....they give no thought to the person really that is laying in the bed!   It can be very funny....and not!

Like buying a massage for someone that just had shoulder surgery..........
Or a pedicure for someone that just had foot surgery...

As far as cancer please ask the person....and a gift may not be what they need... maybe they need help with laundry or a kid picked up at school....maybe they just want you to visit for a bit....they want You.

Maybe they need a Target or Supermarket gift certificate because their medication is costing a fortune.

Maybe they need you not to run away from them because you do not know what to say......maybe all you need to so is say," I don't know what to say but how can I help You today?"   That is priceless.

And to the Patient....Learn to ask for help!   Don't be shy to tell someone what you really need so you do not get a spa gift certificate when you have a port in your chest xoxoxo

And if you get a gift certificate to Will Smith's new movie, "Collateral Beauty"...its about Death, Love, and Time.....just laugh ....really laugh .....someone thinking that just because you have cancer that you might like this movie!!!!!!!! OY!

Cancer Survivor.......All December Holidays 2016....Wishes and Hopes

Its 2016 and again this is amazing to me.... in all of those emotions at once.  I am happy, sad, grateful and not at all....I am angry and peaceful...I am coo coo just like you.  I have cancer for over 15 years ....and I think it sucks. 

Honestly everyday I wake up and I wonder about so many things........I have no anxiety at this point...I just really wonder.

And I laugh at all the folks making yearly goals...mine are at 3 month intervals equal to my scans.

I have Leiomyosarcoma everywhere my kidney, on the head of my pancreas, above my bladder, in my rib, in my liver and wo knows where else?

You would never know to look at me as usual at all!  However I am very aware of my body as it is functioning everyday....and no one needs details on that...:)

This year I might be very cliché......I have been around many dying people including myself as I woke in 2015 after being in a coma for days.....I had no oxygen to my brain for 40 minutes and still woke up!   But life is not forever....not even for me! 

Don't waste your your life around you ....even if you are a Mom or a Dad...or whoever...your kids react to you doing well ...taking risks and not allowing fear to stop you from having a great life.....even in illness.  Be bold....have balls and move forward...nothing ever happens the way you think both good and bad!!!  and bad will always happen so make good happen as well!

Speak up ...take care of yourself because in the end you are the only person that is there for YOU

My wish and hope, is that I am writing at the same time here next year.  It's that simple.  You be here too.  That is our year goal? :) That's it!

Cancer Survivor....Congress..Speaker Paul Ryan.......Is this True about Social Security? Numbers

The Social Security Check will soon be referred to as a Federal Benefit Payment?  Seriously?  Please forward this and let's play numbers.  Ask if these numbers are true?  Who is being ripped off?  Let's talk numbers.

15 per cent of your lifetime income went to Social Security.  If you averaged $30,000 a year over your working life, that is close to $180,000 invested in Social Security. 

If you calculate the future value of your monthly investment in social security ($375 per month including both you and your employers contribution) at a meager 1% interest rate compounded monthly, after 40 years of working, you would have saved more than 1.3 million dollars!!!!!!!!

This IS your personal investment! Upon retirement if you took out only 3% per year, you would receive $39,318 per year or $3,277 per month.

That is almost 3 times more than today's average benefit of $1,230 per month according to the Social Security Administration.  You can google it.

And your retirement fund would last more than 33years!   (until you are 98 if you started at 65)    I can only imagine how much better most average income people could live in retirement if our government had just invested OUR money in low interest income earning accounts.

They misused our money and now calling it a benefit?  We worked our whole lives for that money. and now they have the nerve to call it charity??

Speaker Ryan with all due respect and all of Congress...can you please confirm these numbers?

I and the rest of the United States of America would really like to know!  I found these numbers on a Facebook post but after researching I found this to be true....however I would still like confirmation from Congress.

Tomorrow back to health insurance.

Sunday, December 11, 2016

Cancer Survivor......Let's Talk Health Insurance

If you are here for the first time I have retroperitoneal leiomyosarcoma for over 15 should read from the beginning.  There is lots of info. It is hard to describe 15 years of cancer.  I try.

Today I will bullet as I have several thoughts....and if you have ADHD as I do...bullets are better :)

1.  Health Care is supposed to heal is supposed to work for us.........not kill us.....not deny care...not make us broke..

2.  Medical Decisions should be made by patients and healthcare professionals....not insurance companies designed to operate in the least expensive way possible at the expense of the patient and decent care.

3. I am wondering ...really wondering how the Insurance Companies have been in touch with the President Elect and Paul Ryan...and how that will ultimately deny us more care and potentially kill so many more people due to poor care.

So I say to you all in Congress from both are the Medical Insurance Companies buying you this year?  How much more will the average person suffer this year in care?

All parties in Congress need to take responsibility and speak up ......Fix this.....

Again if the fraud was properly addressed in Medicare,  it would be a financially fit healthcare system.   Why have we let the billions in fraud continue?   When will an intelligent, honest person speak to the public about the way our government actually works in this area?  When will someone have the balls to fix it properly? 

It is not you Paul Ryan so far.....So far you do not represent me at all.  You made a speech awhile back stating that no one in America is alone in illness?   On what planet do you live? 

Next writing I will get a bit more specific on the real issues facing is not what you think...don't read fake news ...check facts .....don't be fooled.

The health insurance issues began a long, long time ago......

Sunday, November 27, 2016

Cancer Survivorship....Thanksgiving 2016

It was and now its gone......If I thought that I might be alive in 2016 would be cancer free....not actually living with tumors for so many is unbelievable really....but here I am!

My non partisan political advice for this year.......about Patient Advocacy and money...

Unfortunately many people are angry at this time where ever you might fall in your beliefs....

Get involved in your care in a very deep way for yourself and others.....

Learn how your health insurance really works.....

If you are choosing a plan right now please speak with all of your healthcare professionals and make sure that they will accept your plan after the first of the year....all of them...even the pathologist....the lab that does your blood ....every single place.

If an error happens and you get a large bill, know that you can negotiate it.......from anywhere....if you feel unskilled in this area.....find a person that knows how to speak up!

It is time to write and call your reps in Congress....all of them ....tell your story so that they have a clear understanding of what is not working.

Ask Congress to finally discuss the health insurance companies and the largest rip off of the public in US history....while we were sleeping.

Ask Congress to account for the fraud in our system especially with regard to Medicare and ask why in an entire election no one speaks to this subject??

It is time for the United States to wake up and truly care for ourselves as people where good healthcare is truly a human right and not something that we declare bankruptcy over.........

Whatever plan has to work ....not work us...not kill us...not deny us care.....not make us broke.......

It is time for EVERYONE to STAND UP.........and SAY.........FIX THIS!

Sunday, November 20, 2016

Cancer Survivor and Social Media

I grew up with invention of the computer and the internet.  There is a good and bad side to the computer and social media....Lets start with the bad and get into the good....

The Bad....

1.  Facebook....texting....e mail is so not personal .....remember the phone or an actual visit?  We have forgotten this in our busy crazy world.  It is sad.  Countless times folks have said to me....I see you on Facebook so I know what you are doing and that you are you do not and no you don't.

People have chosen to be impersonal in what needs to be a very personal time.  I understand.  It is frightening.  You do not know what to say.  In cancer for over 15 years I understand however I write this for those that do not.   This does not mean that we accept it. xoxo

2.  To the not replace social media with live people please....!  If you are able please get out of your space!  Do something new...go get a hug....a machine and strangers does not replace live people.  Pull up your pants and get out of the house!

The Good

1.  Information about your illness
2.  You can connect with some people in your situation.  Just don't sit there for hours.  Your brain will die.  You can get addicted and subconsciously absorb nonsense.
3.  Be careful who you are speaking with and give your info ....many groups are public
4.  Set Goals before hand.....why are you doing social media...what is your purpose...who is your target audience.  Be as specific as possible.   Does your info help someone and/or yourself.  Are you lifting someone up?  What help do you need?

This is short......your life may be long....take as much control as possible so that when the uncontrollable occurs you may be a little more prepared.  xoxo

You are the President of your care.....who is in your cabinet? 

Saturday, November 19, 2016

Cancer Survivorship....All kinds of Info ......

Many People ask me where is the book?  I have Cancer for 15 years ....I even woke from the dead in 2015.  I have personally helped multitudes of people as a career and for free......somewhere along the way there was so much disarray that I could not focus on just one thing.....there was so much happening all of time.  So if you are struggling..... here are a few suggestions on survivorship....and really living...

I have said most of this before however often we need reminding....especially in todays times...

1.  Take Deep Breathes and remember who you are....who you have been and even who you want to be .....yes want to are not dead yet...everyday that you are alive and can are not dead and life goes on.....if you think of yourself as a dead person will be alive and dead on the inside.  That would suck.  Do not go dead on the inside!!   Don't be the Walking Dead!

2.  Organize your life.   This is the hardest part are wondering every minute about the next needle or hospital are petrified on every level...maybe you have kids....maybe you are a care giver....maybe your job is at many maybes!!!  Sit down with someone you trust and organize yourself.

a.  Your treatment plans
b.  Money...all of it....a lot...a little ...whatever....
c.  Medical Directive and Emergency Plans for all...your trust/will
d.  Insurance Info...understand it?   Beneficiaries updated on life insurance?  Benefits at work etc.
e.  You don't understand something?  Find someone who does.  Practice assertive direct, Knowledgeable and kind.
f.  Connect with people like yourself.....make up your mind to not do cancer alone.

Do things for yourself that give you a sense of pride and makes you feel better.

Do not feel guilty, ashamed, shy about what happened.  It is not your fault.  Gather yourself up and think out of the new things....

Everyone is watching you for clues on what to do for you and help you.  Please tell them how to help you.  It is hard to do this as an independent person.  Please tell them.

There is so much more.....Speak UP!  More Later....

Friday, November 11, 2016

Cancer Survivor ........Medical Insurance Companies

Not one Politician....Democrat or Republican discusses Medical Insurance Companies and the power that they have over the economy and all of the politicians.  Not one politician discusses the Health Insurance Lobby and all of the fraud against the public.

Why is this subject never discussed and addressed. 

Why would you privatize Medicare, when all you have to do is get rid of the Fraud and the program would be fully funded?

Why is fraud never discussed by any party?

I am tired of being lied to and taken advantage of by every system that we have created.

We are awake now and want change.....Positive, honest, affordable change.

Are you ready?

Wednesday, November 9, 2016

Cancer Survivorship and Health Insurance

Where do I begin?   In my desire to be 100 per cent non partisan the next few posts will be analytical in nature with a few stories thrown in.......I will lean all over the place...left, right, is my opinion on what works and what does not and where we might go from here.

No hate just debate please....Thank You......I am not going to discuss the past as far as blame because my purpose is to move forward in healthcare....

Remember that I am a stage 4 cancer patient for over 15 my bullshit meter is value of time is high...and my only desire is to get us better care and save money.  I am a simple human.

I also have great respect and love for medical people.  We will discuss that as well.

You can comment as we progress....I am the only moderator so I need 24 hours to respond.   And I may end a topic to move on.  Thanks for your patience.

I also have a secret goal of getting you involved in your care.....don't tell anyone!

I am a patient advocate that wants to put the power in you as much as possible......

Now a story...a real one own....I joke about the hospital a lot....I call it the hotel ....I am there often......same floor ...same nurses...same CNA ( certified nursing assistant), same docs.

Fortunately you get your own room where I go.

One day the gentleman next door was coding...heart attack...I could hear everything.   They were able to bring him back.  Thank heaven.   When it was over I found myself in my room with 4 nurses smiling at me and sitting.  I asked,"Why are you all here?"  They answered,"We need to rest a few minutes after the code and you are our person!" You are our patient where we know that you will do your best to get better and you like us....One of the nurses in the group helped me when my Mom died while I was in the hospital...I had to arrange her funeral from my hospital bed after a huge abdominal surgery.....I knew them a long time.

This is the story that popped in my head today......we will move on....

Sunday, November 6, 2016

Cancer Survivor ....The Repeat

Surviving cancer once is way different than surviving it multiple times or actually living with tumors for years.   I have done both and many people I know are doing it as well.  Its different...emotionally, medically, mentally and monetarily.   Each case is also very different.

Some folks can not work....some can....part time...full time.....some folks loose careers and must reinvent themselves.

Some folks mentally remain devastated for the rest of their lives living in cancer only in their heads.  They can not escape the fear and it ruins their lives.

Some will rise, and reinvent themselves better than when they were well.

Some will be in between.  Medical stuff is like a see saw.....sometimes you are up and sometimes you are down. 

Money does have a lot to do with how you rise and fall.....the more you have, the more opportunity there is for you...without question.

Cancer can be much of the time a repeat performance....again and again until the end.....years and some times decades.

Living with constant illness is a job in and of itself. 

Regular Life happens as well...years and friends come and go....that is a whole other story.....

Many folks ask me how I am ..."I will say today good enough"  I am sure they wonder exactly what that means......

more next post....I am waiting until after the election to discuss health care

Friday, November 4, 2016

Cancer Survivorship Update

Hi All

You can now comment and it will go to Moderation and posted within 24 can ask a question as well.

Next post later today is how this Blog will operate in the future with a personal update.

Thanks for always reading!  7 years here.....

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

Sunday, April 10, 2016

Update April 2016

I have been posting here since 2009.   That seems hard to believe on so many levels.

I am well and approaching 59.....and 15 years of leiomyosarcoma.   I am rare indeed and I do believe I will even see 60....and more.

I live with disease everyday however with new treatments opening up all the time.... I have huge hope.

Many I have known for years are gone.   They pop in and out of my head on a daily basis.

Our medical insurance system still sucks.  I along with many others are working on this.

I walk miles with my dog.... Since 2009 I have lived all over Southern California.

I am working on a one woman show about living with cancer for 15 years ... It is funny, truthful , and thoughtful.

Public speaking about issues in coping with long term illness is my specialty .... Get tissues to laugh and cry.... Contact me at if you would like to book me.

Life is about accepting the past....and embracing the future xoxo.  As best that we can!

Saturday, March 26, 2016

Still Here!

I am still here and will do a huge post tomorrow.... Still kickin well as a matter of fact!