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 friends...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 sucks......you 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 growing....you 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 mom....at 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 ...so I will still look fabulous....as most tell me for now....I would gladly be bald forever to be cancer free...it 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 alone.....you 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 best..no 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 anymore....it is just stability at how your body is working Today.......so 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 body....you can do it ....you 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 loud.....one 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 pain.....in 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 well....how 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 friends....here are some suggestions on how to help someone over the holidays and in general!

Ask the person!!!!!!   Seriously.....as 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 surgery....an 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 now...in 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 time...build 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 years....you 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 us......it 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 parties....how 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 us......it 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......