Tuesday, January 31, 2017

Cancer Survivor ..........Cancer Does Not Care about God....Race...Gender.....Cancer Only Wants To Kill You...Non Partisan Post

We are living in extraordinary political times no matter where you fall in belief.  Cancer...rare cancers do not care what you think or believe.....cancer just wants to kill you ....slowly over time or quickly.

I have met thousands of cancer patients over the years from all over the world.  If you stand beside me needing help....I am going to help you because I understand what you are facing and what you will face.  I empathize. Sometimes I can really feel the pain.....sometimes I actually ache when I see a kid...I hate seeing the kids.  I want to hug them all day.

I am tired of lies and fraud in our Medical Insurance System long before President Trump, President Obama, President Clinton....as far back as President Nixon......I am tired of being lied too...aren't You?

I have discussed in previous post the supreme power of the Health Insurance Lobby...the donations to political campaigns and why our health insurance system just frankly sucks.

So please I would like to call on you to contact your Congress people and President Trump...copy and paste this blog post if you can...

I want to see one politician Democrat...Republican...the President intelligently and honestly discuss the Corporate Health Insurance Lobby and why we can not put up with the bullshit any longer....It is time....

This morning the President had a meeting with CEO's of big Pharma Companies......No one looked happy on TV.....however I bet not much that benefits the patient was really discussed.  Moving the making of drugs to America will cost us more money and fund less research.....with the immigration ban less scientific research will be done here in America.  A lot of scientific meetings are already moving overseas due to the ban.  There is a lot going on that is not thought out really for our benefit.

Please take a moment to google campaign donations to candidates ....all candidates by medical insurance companies....you will see why not much has changed over the years.  There are billions in profit involved at our expense.

President Trump...can I please attend the next CEO meeting of Health Insurance Companies?  I would be honored .....I have a great plan in mind and I am not like a burning house.  I am very much alive.   You can save healthcare....if you really want too.  Your smile Speaker Ryan is very wide these days...at our expense?  I hope not.  Don't be partisan...be human. 

Monday, January 30, 2017

Cancer Survivor.....Dear Senator Pat Toomey of Pennsylvania

Dear Senator Toomey,

With all due respect....or at least some...the other day you called folks like me with pre existing conditions equivalent to a "burning house".  In stating that..... You meant that we are not worthy of any health insurance?  Should we just shrivel up and die if or when we get sick?  We are worthless as human beings?  I am fascinated that you would say that....so I ask you...

Have you received donations from health insurance companies for any of your campaigns?  Have you had dealings with the health insurance lobby?  I am trying to understand how you could make such a statement to the world?

Are you heartless?  Have you never known any person with any kind of illness?  Do you have any kind of illness? 

What money do you earn by denying people care and from whom?

I am no burning house.....I am a human being that has had a job since I was 15 years old.  I raised my kids, worked, and maintained a life all through 15 years of cancer.....15 - 20 surgeries, chemo, radiation, 2 chest ports, 2 stomach ports, 1 pic line....and much more.

Every time people like you knocked me down, I got back up and continued on. Who are you?  Why are you more deserving than me?   Your people elected you to office.  You represent them.....you are supposed to fight for them.....not yourself?

Someday you will get sick.....that is the thing.....everyone someday will get sick, disabled, and die.....

I hope you never need my services as an advocate.....You might be that burning house someday and I might be busy....or dead depending on the current health insurance lobby.   Have a good day.

I dare you to contact me and have a talk.

Sunday, January 29, 2017

Cancer Survivor.....Secrets of Cancer Survivorship and some Random Thoughts

You may be here for the first time as a result of the gracious, fabulous, following people...

David K Williams CEO of Fishbowl Inventory
Cheryl Snapp Conner of Snapp/Conner PR
Lauren Solomon....most amazing Image Consultant inside and out.....

If you read David's Blog today in Forbes ...Thanks for stopping by.

I have been writing this blog since 2009.  The first secret of my sanity is writing here and elsewhere.  I really thought that I would be dead by now.  The fact that I am still alive after over 15 years with tumors is always an amazement to me...even after actually dying and then waking up in 2015.

I have never written this blog for financial gain much to the dismay of others ......It was like a Forrest Gump thing....you know...the part in the movie where he just keeps running??? and running?   That is what happened here!   I just stayed alive and kept writing and writing!   And I guess I will not stop until I am dead....LOL...then my kids can turn it into a book!

Thank You ...everyone for reading all of these years....many folks are passed that used to read.  I knew them well.  I miss them.

I write about this a lot ..part of surviving cancer or any illness well, is remembering who your are, were, and how you would like to reinvent yourself ...even in illness.

Cancer survivors ...long time folks with illness have guilt and a bit of PTSD.  We think about what cancer has done to family and friends of ours.   We think about death everyday if just for a second.

We can not stop thoughts from popping in but we sure can learn what to do once they are there.....we can learn to live a very full life.

My next post is going to be a letter to Senator Pat Toomey of Pennsylvania who compared me, as a person with pre-existing conditions...".insuring me is like insuring a burnt down house!   Would you use your homeowners insurance for that?"  Well tomorrow I have some news for You...... 

Saturday, January 28, 2017

Cancer Survivor.....A Time of Political Upheaval.....Healthcare 2017

This blog is non partisan.....I will tell you though that I will be quite sad if I die in all this craziness.  I enjoy helping others now more than ever....we need it especially in healthcare.  Here is why...

In fighting over just about everything we have forgotten the most important element in healing....Kindness and Compassion...we forgot...here is an example..

There was the Women's March both for and against abortion.  I understand both sides and I support the right of both parties to march and speak up!   That us why we live in the USA.

But it seems like we are a bit lost and forgot to take care of ourselves....sometimes we loose the real message on both sides....here is a reminder because we are women....

1.   We all need to support Medical Insurance Companies paying for birth control....not just Viagra.....seriously?   We can pay for a man to get hard but not the aftermath?   Takes two to tango correct?   You get a free pass why?  Birth control pills and other forms of birth control should be paid for by insurance companies.....how dare they.

2.  Preventive care for Women.....pap smears....STD testing.....etc ....this is a human right...this kind of healthcare is a human right.....Men want to limit this ....the men...got it ladies?  

3.  Pregnancy.....those in office seek to make you pay extra premium for childbirth....and what happens heaven forbid that your baby needs extra care?   Mine did to the tune of $500,000.....way before cancer was in my backyard.

Ladies there are issues that separate us yes.......but more binds us together.   Lets remember that it was not too long ago that we could not vote...could not wear certain clothes...could not own a business or land....could not sit in front of the bus......

We can accept our differences but on some things we must be united....especially on our healthcare.

Women Stand Your Ground

Monday, January 23, 2017

Cancer Survivor.....Riding the Roller Coaster of Treatment Plans

Sometimes I must say that I am just tired.   I will never wake up again with NED....NED is no evidence of diasease...it means I am free of all disease.  My life is wave of sometimes feeling very normal ...then diving into the sea of medical craziness that has been my life for so many years.

As a very long term cancer patient I feel one second that I am never dying and the next knowing that I will die way before what I see as "my time".

And since I never really had the chance to organize my "last act"  (the amazing fun of the last 10 or 20 years of ones life).....I feel time is slipping away and I waste much of it.  I was so very interrupted by cancer right before setting up that last act so many years ago.  Each time a potential new act comes along ....I am visiting a hospital.....how many times can you jump on the horse and then it flies.....and you do not fall off......

And if you think of not appreciating your body in years past or even now.....just smack yourself....because as I feel my body changing almost everyday for the worse, I miss me more everyday.  I love my body....everyday it loves me less....and everyday I wish it was just aging ...but I know my body is dying a little more everyday and I am not sure how to stop it anymore.

I would really like to stay here a long time.  I have so much to say and do.

So as I try all kinds of new and old stuff I hope that I am here awhile.....I have plans...lol...I always have plans.

I spend a part of my day everyday talking with other long time cancer patients.  We discuss what to try next to remain alive......is it surgery...chemo.....immunotherapy or radiation?

When do we start?  Tomorrow while we still feel pretty good or next month...because we would like to hang on to our present qualities of life.....treatment most often ruins that.  And then maybe you do not get it back....ever....

And then the insurance issues of stepping out of network.....that is a whole other post.:)

Saturday, January 21, 2017

Cancer Survivor........Do You See Me? I See You...Do.....You...See Me?

What is past is past.....I am supposed to work with You now?  President Trump.....Speaker Paul Ryan....?  To develop a new path to better health insurance coverage?  I personally feel that you are unapproachable.  I am that high risk person that you discuss with no past and no future in your eyes....I am that dead person that you discuss on a daily basis to the media...

Except I am alive with cancer for over 15 years....but maybe not much longer if you have your way....

Here is the life list.....the list that gives we cancer patients a chance to live a lot longer......

1.  There should be no cap on health insurance coverage....or we are dead....
2.  There is no medical underwriting as a denial of coverage....
3.  HSA's are not health insurance...you know it.....we know it.
4.  We need access to new therapies and new drugs as they come along...medical insurance companies need to keep up with research.

I would like to know personally how much money You speaker Ryan and potentially President Trump have accepted campaign donations from medical insurance companies?  I know democrats have as well.....the issues of health insurance companies and health insurance are not new.....this insanity has been happening for a few presidential terms of office....goes way back....

I looked up campaign donations to political parties....it is huge!!!

I have over 15 years experience in my own story and thousands of others...please feel free to call on me for my unique expertise in about 15 major surgeries....6 chemos...one new immunotherapy drug.....2 chest ports....2 stomach ports....2 lung tubes and much more.....and last but not least ....waking from the dead on April 24, 2015.

There are more people like me everyday due to medical innovations...will you abandon us?

I am not angry....I want you to see me.  Do You See Me?

Cancer Survivor....Story Time

Its the weekend.  Back to business on Monday.....as our government gets ready to redesign healthcare, I have some stories to keep in mind.

The other day I was in clinic at my cancer center in Los Angeles.  I have been a patient there for over 15 years.  I have stage 4 leiomyosarcoma.  If this is your first time reading please browse the other over 500 posts :).

In clinic was a woman in her late 60's....not far behind the age of our new President.   The nurse came in to talk with her.  This is what the nurse said, " We have found that the medication for your cancer that we want you to have.....your insurance will not pay for it.  We are trying to figure out what to do to help".   The Woman said, My Husband and I live on social security and small pensions....the insurance has to cover it ....we do not have extra money."

I am sitting in the chair going a little crazy......ya all know I am an advocate.   Finally I just could no longer stand it.....I walked over and sat down next to her....I made a list of what she needs to do to possibly get that drug.....she cried...I cried....Cancer sucks.

But this is the deal......You and your doctor should decide your care...not an insurance company that knows nothing....I should not have to "work" the system to get what we patients need.  I should not have to write a complaint to the State Insurance Board.  I should not have to threaten social media and write letters to CEO's.  I should not have to change medical codes and spend endless hours on the phone.

I should not have to work that hard to get decent care....you should give a crap about me and those like me.  Someday you will get sick.  Someday you will need something that you can not have.  And then you will call me and understand.  Someday you will wonder if you are dying and wonder why no insurance company gives a damn.

I will figure out how to work the system.....I should not have too.  I don't don't care what you call whatever Insurance you are working on...it better work for all and better than what we have now....

Or be held accountable to the entire country.   We will be waiting.  More stories to come.

Wednesday, January 18, 2017

Cancer Survivor .....Healthcare 2017

It does not matter your political beliefs in healthcare...your race...religion....it does not matter how you feel about guns, abortion, taxes, education, energy....if you have money ...no money....your healthcare will truly dictate a good portion of the quality of your life moving forward.  It is the ultimate influence on your well being...not just you.....  your family and friends as well.

I want Congress to take responsibility and apologize......the whole of Congress ...all parties.   You all screwed up for so many, many years......I call it while we were sleeping .....while we were sleeping, we trusted you to do the right things....to protect and care for us and you did not.

You allowed yourselves to be wined, dined and paid off by the medical insurance companies and yet no one discusses this.  Please google campaign contributions by insurance companies to political campaigns.   Everyone has taken lots and lots of money over the years....while we were sleeping and trusting. 

I take a tiny bit of responsibility for not watching you .......I was too busy in 15 years of cancer chasing health for myself and thousands of others....so I trusted you to make things better for us and you did not.

The question is what about today?  What about now?  Will make you anything better?  Or will you all sink further into the swamp/sewer/gutter from where you all might reside?  not only Republicans....Democrats as well ....shame on all of you for the last 50 or so years of behavior in Healthcare.

I dare you to do better.  We are awake now and we are watching You all.

Today I am meeting with two fellow cancer folks ....like me with cancer everywhere and yet we are alive and we function....we are your high risk pool....what will you do with us?

Will you support us in our mission to find cures and stay alive with our families?  Or will you count us out and not give a damn?   We shall see......

Monday, January 16, 2017

Cancer Survivor...........Your Healthcare in 2017

A story not about me.   My Dad passed from lung cancer in 2003.  Prior to his passing he actually had a decent quality of life and he knew that he was dying.   He accomplished a lot before he left.  However in his decline it came time for him to have an oxygen tank.  He could not breathe well at all on his own.

The representative from his insurance company came by one day with a portable tank and to test him.  He had been resting all morning and was in Ok shape.  She tested his oxygen level and stated that he was just 1% percent away from getting the tank and she could not leave it today.

I asked her to leave his house for a minute and then please come back.  She walked out.   I then had my Dad walk quickly around the living room until he was breathless.  She came back.....tested again.... and he got the tank.   This is just a tiny story about the nightmare of the power of our health insurance companies.

They decide what chemo and medicine you are allowed and which doctors to see.   They decide your treatment plan and surgery because you don't have the money to pay for it on your own.   They are all powerful and not one single Politician from any party has the nerve and guts to discuss it!!!   It's been a mess for a very long time.....way before the Affordable Care Act.  And your care is threatened now more than ever.....

I don't know about you but I am sick and sick of working the system.   I do not want to switch medical codes...stay on phones for hours trying to get a drug ....negotiate medical bills for myself and others....I am so tired of being a forced to "work the system"   Why cant things just work?

Why do people go broke and die from improper healthcare in this country?  It makes no sense to me.

Saturday, January 14, 2017

Cancer Survivor.......Random Thoughts for 2017

A friend in the Cancer fight with me for years tagged me in a very raw post the other day.  This person is very angry.  I understand. There is nothing wrong with anger at our healthcare system....what it is and what it might become. Anger is not enough.  Action is more and not just on social media.   Social media with all of its fake news and angry people not being accountable.  Positive action for change is about real action and accountability.....

It is also about something else.   It is about hope and faith that you as a single person or part of a group can make change.  If you do not have hope and faith you are lost.

Then you must make a plan....by yourself or with others.  And then everyday you must take real action.....even if it is a little everyday.  The days and the actions add up to something.

The hardest part is to remember who you are everyday in survivorship.......that is the hardest for me....to remember who I was ....who I am....what to let go of and what to embrace.

I am 59 years old.   I have had cancer for 15 years.  I even woke up from the dead in 2015...no oxygen to my brain for 35/40 minutes......and I am still here typing away with 90% of my brain still here.

I am angry with you.....however I use my anger to help me move forward and make change.   Everyday I feel that I am not doing enough.  Everyday I feel I am wasting time.  Everyday I wonder if or when I am dying of this disease.

Everyday I stare up into the sky and thank all Gods that I am still here drinking my coffee and typing on my lap top.......or jumping on the beach...or using the rest room ok :)

Like you I was supposed to be doing anything else at this time.......I understand.  But who knows where we are going this year?   xoxo

Tuesday, January 10, 2017

Cancer Survivor.....I Dare You in the New Year

Do You ever marvel at the fact that you are just alive?   On the other end do you cringe and cry that cancer is such a huge part of your life?  Do you mourn your BC Life...before cancer?  Do You celebrate your victories in your life and see a medical, mental, or emotional failure as just a stepping stone to something better?   If you are not actually dying, do you think everyday that you are?  Do you celebrate being alive by taking good care of yourself?   Are you wanting something that is actually within your reach?   Do You plan ahead?   Even 3 months?   I could ask questions forever.

Here are things that I will dare You and me to do this year.....why not right?   The other choice is not really living with all of this crap well!  You must try and step out of cancer everyday.....because it is there anyway.....maybe it is not going anywhere.......:)...I get that ...lol....and on those days when it is with you every waking moment....maybe the comfort of a distraction big or small will carry you through.....just maybe.... xoxo

This year because I have the most leiomyosarcoma that I have ever had after 15 and a half years....I am going to pretend when I can that I do not have cancer as energy and body function allows.   I am still fortunate to not look a bit sick at all.....

So I dare you to plan something....anything in advance a week ..a month....3 months....6....up to a year.  The best planning in life is actually short term because you can see it being done.....not necessary to be crazy....anything business and/or pleasure.  Does not matter what it is ....it the sense of accomplishment and remembering who you are every single day!  

I am going to plan my next day every single night.....I used to do this when I had a bustling insurance business.   My entire day was completely planned the night before.  When I wake in the morning I will know exactly what I need to do.......this is a small one but perhaps the most important.   I had been planning in the morning....however too much time I realize is being wasted.

I have to go to two new places for business and fun this month....cancer or not.....I used go out a lot and now find I am happy to stay home a lot....I know I have lots of cancer and can stay home....but it is really not OK.....so out a little bit more I go....You should too....even if it's just a tai chi class....get out of your normal routine!

You let cancer win if it stops your life......don't let it stop your life.....I get interrupted a lot but I am not done ....don't be done until you really are!

Monday, January 9, 2017

Cancer Survivor.....The Art of Gratefulness

It was the holidays and the new year.   I heard and read a lot all over the place that we all should be grateful for everything.......all of the time....seriously?

Even a doctor said to me that I should be grateful that I do not have cancer in my brain?!  I looked at him like he was crazy.......it also sent me on a thought path of what being grateful really is.....as a person and particularly as a cancer patient of 15 1/2 years.....so here are some of my thoughts...

Keep in mind my sarcasm and love for comedy........ 

Seeing a million Facebook posts of just saying that "you should be grateful" is ridiculous.....some of the posts have flowers and other types of lovely designs.  Who are you really speaking to when you post that?  A cancer patient?   Your kids?  Everyone of everything?

When The doctor said the above to me this was my response and his.....this was the conversation...keep in mind that I know my doctors over 15 years...we are friends these days and we speak bluntly...I adore hum...I am just being "Me"

Me:  You think when I wake up in the morning ......that the first thing that pops into my head is that I am grateful about everything and that I am so very grateful that there is no cancer in my brain?

This is really how it goes when I wake up in the morning........

My eyes open....that in and of itself is a great thing....and for a less than a second I do not remember that I have cancer.......I am grateful for that less than a second...

Then I remember that I have cancer because I run....and I mean run to the rest room....I get grateful again when I make it on time......

After that I access how I am physically and if I am up to it at 6 am, I go out to get a cup of coffee....I am super grateful for that quiet time and watching the sun rise.   I stare at the sun rising for a few minutes......

Then I go on line and help other Sarcoma Patients while I run back and forth from the restroom....I am very grateful for that time.  

After that I shower and hope that my boiling hot shower is not interrupted by me having to use the restroom yet again............I love hot showers....I am grateful for my morning showers.....perhaps the most.....

Finally I get dressed to experience my day.....whatever I am able to plan based on my level of energy

Random gratefulness.......I walk my dog.....I have fun with my adult kids and friends......I get a lot of work done....I help other cancer patients.....I can eat!

But to think about things..... to be grateful about things that have not happened ...to make life negative and not positive.....No Thank YOU!   I could also be grateful about not being hit by a truck today in the rain.... silliness.....

My dear Doctor.....please tell no more patients to be grateful about everything and nothing.....things that have not happened......we all feel guilty enough and sad enough having cancer...Your job is also to help lift us up.....lift your patients up!

And folks....you too...don't ever tell a patient to be grateful....look into your own life and be grateful!  Not someone else's....the idea of empathy...walk in that person's shoes......

Grateful is in the pendulum...swinging back and forth with a multitude of other heart felt emotions .