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 .