Friday, April 28, 2017

Cancer Survivor......Update Amy

Hi All,

I was trying to be consistent however looks like shortly I will have a procedure on my liver.  It will make this around...hmm...over 20 procedures in 16 years...and so much else...not counting the immunotherapy...chemo...scans ....ports...pic lines..etc.... etc

If you are new here or not....there are over 600 posts....I see few folks go back to the first years however you really should as not much has changed in medical care!!!!  We are trying!

Last time I had a procedure I went into cardiac arrest for 40 minutes......was in a coma for days and then woke up of which no one knows why.  I remember nothing.  I do not think that will happen again.  I am not petrified very often these days.....I am scared of this.  PTSD I guess.

I will type here for another week or so...just will not be everyday.  I have stuff to do!

I just want to say Thank You!  This blog is somewhere in between 6 thousand and 10 thousand views a month.  It is truly is my therapy in person and on line ...helping people...helping people takes my mind off my own health issues and it gives me strength in helping myself and others.

Those that have met me in person know that my mottos are, "Never say No"..."How do I work around that?" and , "If  you are thinking about doing something and it scares is most likely that you should do it"  :)

During my 16 years of this .....I have had many ups and people passing away...single parenting...regular life......

However I have also started businesses...met amazing people....learned some stand up comedy and public speaking....and I have advocated for thousands of cancer patients from all walks of life.

Don't be shy...speak up everyday without anger.....respect and love your whole self at whatever point you are in life....and when you can help others even in the smallest way xoxo

Thursday, April 27, 2017

Cancer Survivor.....Another Slap in the Face on Health Insurance

Paul Ryan you are the slime of the Earth.....this new plan that you are trying to push through..includes a separate fund for folks with pre existing conditions where they charge us a fortune for care that will kill us....

I will stand alone in front of the Capitol with my sign.....You will not kill me...don't test me ...I will come and stand there with others.....just for you...I promise....with my sign and my voice...I have a big voice....and lots of cancer....and I advocate for many.

Why aren't Democrats discussing and fighting health insurance companies?  You disappoint me.  I know they paid you as well. 

I have cancer for 16 all just amaze me...

That's All for now......

Facebook Live today in Treat Your Healthcare Like a Business......2pm Pacific Time...

The House Freedom Caucus.....the other slime is backing this plan and it is very, very bad.  Why do Republican Representatives not give a crap about any human being??  Except Yourselves?

Tuesday, April 25, 2017

Cancer Survivor.......Chasing Amy....Chasing Leiomyosarcoma...The Tortoise and the Hare

You know the story right?  The tortoise and the hare?  That bunny is fast....always running without thinking...the tortoise....slow and steady.  Sometimes I am the tortoise and sometimes the hare.....

Sometimes I feel like I am loosing....sometimes I am winning.....sometimes I am just praying in extreme discontent.....sometimes I am screaming with joy and sometimes just in fear....many times in anger.......sometimes I am just exhausted ......then I rally.....

Sometimes I sit in disbelief ....I can't cry anymore because I have been doing this 16 years and I know that you never know what is around the corner both good and bad.....I spend my time mentally getting ready for the run around the corner......I wonder more than I worry these days...I just wonder.

I am going to be 60 in less than 2 months......A lot of the time I feel like I am chasing myself....

I am looking for the old and the new me constantly.....I look for a place of peace where there is none.  There is never peace .......I don't have inner peace anymore...Unless someone cures cancer, I will have no peace.

But I have mastered the moment.  This is the key....mastering the moment.....I am fully present in these special times of joy.  I live for them.  Most often it is a surprise however when I am in it...I know it....I wish that I could stop time at these moments and stay there forever.

Regrets are magnified in cancer ......try not to do this and just live your life with gusto....speak up...take care of yourself....we never know what is around that corner ever.....

Tomorrow I will get back to business.....when I think about two years ago at this time....I was in a coma...people thinking that I was brain dead or dying....and yet here I am typing away...

Keep typing people...keep going....xoxoxo

Monday, April 24, 2017

Cancer Survivor .....the Annniversary of my "Miraculous Recovery" and share

Today two years ago today, I was clinically dead for 40 oxygen to my brain....the cardiac team denied my care because they said that I had too much cancer to bother to revive, and I was left for dead.........until my amazing surgeon of 14 years ran through the door and decided I was not dying on that day. 

From what folks tell me he was screaming at me that I was not dying after he operated on me 15 times.  I guess that I heard him screaming.  It says in my medical records that when someone screamed at me.... I seemed to hear them.  As I have been saying for almost 16 years now.....there is nothing like a great scream to release the tension!!!!!! 

I wish that I was hovering above like so many people ask me....but I have no memories of the entire event until I woke up days later in ICU with none of the equipment left in my body that caused me to suffer immensely....I woke up body filled with 35 pounds of water weight as evidence of the event ....My brain was intact (well sort of ....Lol)...which was indeed another miracle. 

My eyes opened to see my daughters standing above me in tears......I could not speak throat soar from all of the equipment shoved down my throat to keep me alive......but I knew that some thing horrific had happened.

One of my daughters said, "Mom, You were dead, do you know who we are?"  I smiled and gave the middle finger at which everyone then rejoiced in disbelief.  Crazy right?  I asked for a pen and paper in sign language because I used to be an interpreter in one of my last lives......I could not write yet.  My coordination was awful....but I had command of all my words in my head.  There was no sign language interpreter on call at the hospital...that sucked. 

The parade started after that...of medical people first not believing that I was indeed alive, and second....that my brain was working....I was thought to be brain dead. many jokes I have from this ....:) :)

There was crying everyday before from sadness and after from happiness.  Everywhere they wheeled me for medical tests...people said.....OMG..."You are her....I heard about You....the whole hospital knows about You"

I will write another post about this today.....believe in miracles...because you never know what is around the corner.....Keep Going  xoxo 

Monday, April 17, 2017

Cancer Survivor......Off Line Until Monday, April 24th.....Unexpected Happenings

I am taking a week off ...not because of health reasons......I need some free time!

Yes...I have all my doc appointments however I am fitting a bunch of work in here as well.

Also to be honest....I am late with taxes....sad but true....Lately I am always late....

Just finishing two drugs recently that I tried ......took my brain for a bit of a just recently came back! 

I will finish the money talk upon  my return.....because if I do get my stuff in order ...I will have some new money issues with the Tax folks...xoxo

If you are new here for the first time there are over 600 posts for you to browse through...

Lots of info on Illness Survivorship...not just cancer really...everything....I am typing since 2009...

Have a great week!!!!

Wednesday, April 12, 2017

Cancer Survivor.....Let's Talk About Money Day 2

Please read the prior post.  This is the second in a 5 day series.  Thank You.

We don't like it but Cancer becomes our new Job.....especially long time folks.  We become expert researchers, insurance people with more knowledge than our agents, we learn medical coding.....we call pharma companies for discounts on drugs etc......why?   Because being sick costs a bloody fortune!!!!

We may not have enough control on our illness but we can control our paperwork and knowledge of it and yet patients have huge PTSD and ADHD when it comes to paperwork and our knowledge of let's talk about this today....Your paperwork and such......

1.  If you have not done a real budget in years or you need a new one in light of is the time.....whether you are rich...poor...or in the middle you have got to do this.....know where all your money is going every month.

2.  Do you really understand your medical insurance and how it really works?  If you have a good insurance agent now is the time to have them earn their money and go through your policy with you.   If you do not have an agent .....maybe a rep at your company or if your illness is rare and complicated to pay an advocate to review with you. 

In another post I am going to discuss what a real patient advocate can do and not do.

3. Review your emergency it enough?  You need more?  Can you save more?  Is it liquid?

4. What benefits do you have at work...?  And this is tricky because at times people want to keep their illnesses a secret in fear of actually loosing their jobs.  I understand this.   I see it happen all of the time.  However you must know your all of your benefits and how they may think an employee education class is is not!  There are items written in policies not discussed and when you apply for these benefits there is an exact way to apply so you receive them.

5.  Involve your family and or a trusted friend in this preparation....don't do this all alone....I have emergency friends....3 of them ....if something happens they come running to assist my adult kids.

Pick a person that is not shy...methodical...and can be unemotional in an emergency ....

And don't lock everything at a safety deposit box at the bank!  If you want to lock papers at home make sure someone else has the key as well!  Later today is another post about money....a new post on negotiating a medical bill and how to save some money in your care.

Tuesday, April 11, 2017

Cancer Survivor...Lets Talk About Money ...for 5 Days

As I have said since 2001 when I was first diagnosed, surviving cancer is about money....if you do not need it you will not understand this and I am happy for you!  So let's be real and discuss the facts that in illness money does buy you happiness!  It buys you care and services that you need to exist and if you do not face it head on it can actually kill you!  Let me please elaborate......

I have facilitated and attended many support groups in almost 16 years.....the most popular subjects discussed are....

Treatment Options
Money....inclusive of loss of job....etc etc etc..list is endless
Children below the age of 18....because they need guardianship, money and they are not in control of their lives.  Someone else is until they turn 18.  Parents become petrified.
Sex .......worry over significant other leaving due to changing physical issues and fear of death

These really are the big Four....surprised? 

But today is about money........I will type a 5 days about money.

If you have read prior posts you will know that my mantra is... control what you can and let the rest go........some of you may think that this is a stupid statement however for me ...I feel good about actually doing necessary stuff that will help me in survivorship and my family....a money plan helps.

I could have planned better as well...saved more......thought ahead ....I did not in many, many cases......but it is never too late to really plan ...even in cancer.

I feel the most important subject in Survivorship is Money and yet the most ignored in counseling.  My standing joke is that free services are art, writing classes, massage, Reiki, Tai folks go for all of these free classes ....then secretly go home and cry themselves to sleep because they can not pay their bills.   So please join me everyday this week for a new post about money .....

Today.....overcome your fear about paperwork ...tomorrow is a talk about all kinds of paperwork. xoxo

Monday, April 10, 2017

Cancer Survivor....Life Exaggerated ...a little more on Mental Illness..

In helping to facilitate many support groups over the years I have found one thing for sure......

We all know that in cancer or any illness life.....the rest of it still happens...all the good and all the bad.  It is not just about surviving is about your whole life....

I have found that for example....if you were shy before cancer cancer that could be immensely increased.  If you are naturally a scream much louder and more. The list is endless.

Relationships ....those take on new meaning as well...if you or your significant other were thinking of separating......cancer might become the driving force to act.  It often does.

Your job....if you had issues before...those get bigger too.  I had a gentleman once that I was trying to help....he lost his leg.  He could not do his job without it.....the company found a loop hole and denied his benefits.....that was life altering.  It is not just is life....

You still have to raise your kids, take care of your parents, go to work, maintain your care, etc still have to get a life in all the craziness.  This takes work, practice, and knowledge.....

Life is exaggerated in Cancer Survivorship.  All of it. 

That is why developing coping skills, getting help from all kinds of places and people...even strangers....are critical to your care.

You must go and ask for help....unfortunately those folks don't come to you....You have to take that first step.

I know many success stories......people that were a mess and they rise.  They rise to heights that they might not have in health. 

And there are those that get stuck of varying degrees......really healthy people think that they have cancer forever and they live that way....they live in fear their entire lives. 

Most of us experience a vast amount of emotions on any given health and cancer...I ignore them....or accept them and move on is that done?  Let's discuss that next time. xoxo

Wednesday, April 5, 2017

Cancer Survivor...The Fight for Mental Health in Cancer Survivorship

During one of my hospital stays there was a young woman in her 40's next door to me on the floor.  She was recovering from a colon cancer surgery.  She had just been diagnosed.

When I am in the hospital recovering from an abdominal surgery, I really don't want a lot visitors.  It is a huge surgery and everyday counts on recovery...there is a goal everyday...the first day after surgery you walk, and walk and walk as much as you can ....walking gets you out of the hospital faster but it is exhausting.   And you must sip water....pass gas, use the restroom ....get pain under is a real job and healthy people that visit for long periods of time don't understand this.  

And patients having abdominal surgeries.....we have our pride....I don't want you to be around when I am trying to pass gas or use the restroom...:)....seriously....come visit me at home!

I also love medical people...the folks assisting nurses, the nurses etc.  They get me when I am not well and I enjoy talking with them.....I am on the same floor for 16 years....I have known some of these folks when they were babies and now they run a floor.   I had to tell you all this for the story...back to the young gal recovering from colon surgery...

I went out to walk one day...the floor is a big hallway designed for you to take a U shaped walk.  You walk away from your room so that you can not see it...

When I returned from my walk I found the Gal recovering from colon cancer surgery sitting on my bed......a little scary right?   I stood there for a sec and she said to me, " How do you do this?   You do not ever seem upset or in a bad mood.  And you are alone a lot like me."   Heartbreaking ...I asked her if she had family or friends to visit....she said when her family comes they stand there and cry.

I had to call the nurse because I did not know her at all or the state she was in......15 minutes later her room was empty and I never saw her again.  I hope that she got the help that she needed.

I have been in support groups....I helped found one....and in therapy alone on and off over the years...but it has been many years.

Mental illness is real in cancer survivorship.......PTSD is real....the spectrum runs all over the place as far as those doing exceptionally well...reinventing their lives and others get stuck in worry and the thought of death forever....even when they are well physically.

Make sure as a survivor that you do not ignore your mental health.  If you need help there are plenty of good Survivor programs... often for free.  Do not sit alone!

Cancer Survivor.......Real Stories from the Past

I am going to do a series of real life stories...some of them mine some stories from others.  They are all true.  I want to illustrate what really happens on a daily basis in our healthcare system both good and bad.   Each story will have a theme for the day to help those in a similar situation.  Today I will start with a story from my past and why you need to keep searching and always speak up.

Many of you know that I have been doing this since 2001.  I had years free of disease from 2001 to 2003 and again from 2003 to 2007.  I was scanned every 3 to 6 months during this time to keep watch.

When I was re diagnosed in 2007 a doctor said to me ...."Sometimes you need to just shut up and take your medicine" a not nice tone.  I wanted to discuss my case with him and he would not have it.  He wanted things his way and I was not to be included in the plan.  He was writing me off....and thinking I am already on way to heaven.

I quietly responded," Your bedside manner sucks"....and I walked out...never to work with him again.

I found my next doc who is with me to this day and has saved my life an endless amount of times...even brought me back from the dead when others would have let me go.  When he stops practicing at 100 someday the world will miss him.  We all will miss him terribly.

You must... in every situation not accept No......You must find your voice and keep investigating options until for you personally there are none.  And that time is different for All.

Life ...the future is really an unknown.....stop thinking that you are dying and start living...keep looking....control what you can and let the rest go. xoxoxo

And choose a doctor that respects You and wants to work with you.   xoxox

Tuesday, April 4, 2017

Cancer Survivor ......Medical Update and Thoughts about Life...16 Years

Hi All....Yesterday I visited my 3 favorite doctors on Earth.  In a few weeks is my 2 year anniversary of dying for 40 minutes and waking up and no one knows docs call it a miraculous 3 months is my 16 year anniversary having retroperitoneal leiomyosarcoma.  I live with little tumors all over my body.  I have no clue why I am alive....nor does anyone else.   Being a patient advocate, I have seen many folks pass away....often we look for answers in life and death where there are none!

I have had over 15 major surgeries.....SBRT Radiation all over....ports, pic lines, medical records are way over 10,000 pages.  I am scanned every 3 months since 2001.  And yet here I stand various

I am investigating some options for the future...even intra operative ablation.....that would be a new one for me......there are no more drugs left really....

I am always alternative minded for shits....and giggles and why the hell not at this point!

I am reminded everyday to be open minded about the future even when healthy people around me are not......a lot of healthy people don't know or understand much really :).....they are too busy complaining and being angry about everything....I want to scream at them. 

Most folks are too busy looking out rather than in....look in more....then the outside world will be better for you.

I am going to stop wondering about my untimely will be untimely whenever it happens ....even another 10 years from now......I am going to try some new fun can join me for the ride......however long it is xoxox

Come on over!