Tuesday, May 23, 2017

Off blog till June 1st..blog highjacked by some crazy Bible sight apologies..not me

Hi All.

Doing a bit of reorganizing till the first!  I may pop in but not sure.  Thank You and please read all 600 posts if you are new here!

Happy Summer!

Friday, May 19, 2017

Cancer Survivor...#16 year Cancer Patient Says....What If Survivorship is Being Taught All Wrong?

This has been on my mind.......what if everything they are teaching you to care for yourself in Cancer Survivorship is all wrong in the long term?  Or what folks are teaching you is OK but they are missing some of the most important long term aspects of care?  I think that is how I really feel.  As I travel around....and talk to other patients something is missing.....here is what I think.

1.  I think every patient needs a course in assertiveness training.  A business communications class.  Learn how to speak to people respectfully...kindly and get what you need.  In rare cancer survivorship if you do not have this skill....it could be deadly.

2.  Money.......I will make a separate post about this because it is complicated however the amount of people not even having a budget continues to amaze me. 

Not knowing how your health, life, disability, insurance actually works...I get it....get someone you trust to teach you. 

3. Don't blindly trust everyone....if your regular oncologist tells you time and time again that you do not need a specialist...don't listen!!!!  Get to a specialist in your disease....your life depends on it.

4. Every time I hear from a cancer patient hiding their disease so they do not loose their jobs, miss a promotion, just get side lined, etc ...my heart breaks.   Understand your benefits etc when you are well. 

5. Many Survivorship programs hire young Therapists to do big jobs in support groups and individual care.  They had all the schooling and learned the basic answers to a cancer patients needs.....but they have not "been there" Thank Heavens...and they miss much although lovely people.  So if you are really looking to talk and gain a working knowledge....maybe find someone with a bit of experience....someone with loads of "empathy" ....not just sympathy.

6.  Create a working process for your care.....create a world that you can live in ..control what you can.....when everything else is so not in control

Tuesday, May 16, 2017

#16 Year Cancer Patient Says.....The Robots Are Coming??!!!! and other Machines

I read lots of medical stuff...even on Twitter....I follow some brilliant medical folks that post articles from all over the world.   I can not imagine being in the ER and my first contact interview is with a robot....a real robot checking me in.  So you might not visit with a real human until the robot calls them?

Obviously if you are truly having an "event"...the humans will come running.  However I can not help thinking that everyday we are becoming more and more inhuman towards each other and the World at large.....that all of this machinery just carries us further away from each other everyday.

Even here on social media I believe that partially me typing and you reading...inclusive of Facebook, Twitter, Instagram, etc brings us further away from actually being with other human beings.  There is no replacement for seeing others in person....none. 

I understand the need for innovation, creativity, and making money.....but will all of these inventions actually trickle down to the average patient?   How will we pay in the future for anything medical amidst all of this innovation? 

As a Patient and Patient Advocate I am all for progress, new ideas, making money.  In that thought process and other issues we can not forget the average patient in care and how they are really progressing in the everyday care that they receive.

I believe in all of the new innovations we loose sight of our real Patients.  If we can invent a robot to check a suffering person into care....why cant we create a decent healthcare system?

Right?


Monday, May 15, 2017

#16 Year Cancer Patient Says....Back to the Business of Healthcare ...Secrets People Tell Me and More

I have a lot that I do not discuss on any given day..everyday I get messages from people that I do not know.....people I will never meet in person....but as far as cancer goes...I know them.

Some secrets are.....

1.  I am so tired....I fought for so long...I can't talk to people I know... about how tired and scared I really am.  They just think that I will live forever...that I can keep doing endless medical things to myself and everything is ok.   I don't feel OK.  How do you feel about 16 years?   I am only doing 3...or 10...etc  How do you do this? 

2.  We just adopted 2 children and I am going to leave my partner with them alone.....I don't know how to do that.   How do I do that?

3.  I ran out of food the other day and did not tell anyone....I am embarrassed....I get food money tomorrow....I went to the food bank...no one knows I did that.   How do I get help?

4.  I miss my hair....I miss Me....where do I find Me?  

5.  My doctor (who is not a Sarcoma Doctor)  talks to me like I am an idiot ......how do I get to a real doctor? 

6.  Not sure how to pay for this medication....I don't have $2,000 a month and insurance says I can not have it.......I am a single Mom with kids....can you help me get this medication...can you call my insurance company?  I am not poor enough or rich enough...must I fall through the cracks and be destitute to get help?  Is that how this works? 

7.  My company figured out how to fire me without my benefits....can you help me?  My savings are almost gone.....

8.  My Mom has Alzheimers and it costs about $5,000 a month for her care...do you do Alzheimers or just cancer?  We are running out of money...quickly..

This is the real face of healthcare ......F...You....Republicans that support this.....Others better stand up and fight or we will unseat You...or die trying.




Saturday, May 13, 2017

#16 year Cancer Patient Says...Happy Mother's Day ...Thoughts on this Day..Mom or Not

I am a Mom.  And if you have read here for a long time you know that not only do I have cancer for 16 years ...my kids also lost their Dad in 2006 of a heart attack.  On this Mother's day here is what I have to say and it may not be what you think......(remember I am a frustrated Stand Up Comic)

Yup.....you love me kids and I love you...that is a given..in our world anyway.  And yes...let us acknowledge that we have been through some mind blowing stuff together...Way more than I ever went through as a kid and even young adult for sure.

I will leave you someday....maybe sooner than later....who knows...I even died and woke back up in 2015 so who really knows?  I will hate leaving you whenever that is...because I know that I will miss so many things in your life....both good and bad.  

I never thought that I would have kids..no less twins.......I have come to the conclusion that kids change everything...they changed everything.....every single thing in my life I thought of differently.

The only other thing to do that in my life other than my kids ....was Cancer....because of the longevity of it in my life.....My Kids and Cancer are the two events that rocked my world in the best and worst ways.  The death of my ex Husband is a close third......very close.

So my advice to anyone that wants to be a Mom is.......in no particular order....

1.  Know that someday you will leave your kids...so you must make them strong, independent, and a little crazy.....teach them that they are fabulous and should speak up with respect, common sense and wit.

2.  Know that they are watching you....they watch everything you do and say.....even if you don't think so.  They know everything and what you do now will reflect on them now or later.  They are sponges.

3.  Kids are like a bowl of cherries.....some are easy and yummy...and some ....the pits....you must plant them and watch them grow....they might bloom slowly or later in life.  Don't make them feel bad for that.  Also.....let them be different.....different is good....very good.

4.  The guilt of being a single parent if you are one.....get over it....it serves no purpose....just do the best you can and that could be enough.

5.  Laugh...Laugh a lot...Scream with Joy and Dance ...grab moments when the days are hard....grab moments when the year is hard and you seem stuck.  Teach your kids to laugh...life can change for the bad in an instant but also for the good. 

6.  If you think you should do something and you are scared...do it anyway....You know what I mean...xo

Time...every morning I wake up with tumors everywhere I can't believe I got to wake up ...I am always thinking that I am wasting time.....it is so precious!   Don't waste time....don't forget to learn how to wiggle...wiggle means not accepting no for an answer and getting around it...learn wiggling.

Thursday, May 11, 2017

#16 Year Cancer Patient Says.....I am Screaming Can You Hear Me???????? (humor)

I am screaming on the inside....I am smoldering...My emotions are cooking....not in a crazy way....I am just in that place....I am in that place where I have to get really brave to stay here on Earth.  And I do not like it ....2 months shy of 16 years.....You  might think I am used to medical stuff....real medical stuff and you would be wrong....I have to gear up as a wave is coming ...a medical wave.  And all I want to do is enjoy life.....there is always a price these days...

And you can pass along some philosophical bullshit to me...but whatever you say, I have already been there...."I mean please after 16 years do not give me lines of bullshit"...I have heard all of them and then some....a small list of lines I get on a daily basis....:)...LOL

1.  You are not dying God has a purpose for You.....OY...I say OY
2.  You should feel grateful that it has not gone to your brain.....and how do we know this for sure????   LOL....I have not checked lately :)  That is not how grateful really works....seriously..
3.  Have you tried Snake Green with Polka Dot Grape Juice from the Mountains of Afganistan...it will cure You 3 weeks after drinking at a cost of $500 a teaspoon!
4.  You have Cancer because of a crime that you committed in a past life and for $2000 I can cure You!  (yes....someone said this to me)  Ugh

The list is endless...this is a small list.....

So I will keep screaming on the inside and do my best to stay here.......that is all I can do everyday....and I will keep typing until I can not anymore!!!!!

Guess I will go drink some Afganistanian Snake Juice right now....:))))))

Tomorrow back to business.....


Wednesday, May 10, 2017

#16 Year Cancer Pateint Says....Is Healthcare Really a Human Right? And other Random Related Thoughts......

Yes...it is ...every human being on Earth deserves enough food and clean water so that they are not hungry and can grow strong.  Every human being deserves a safe place to lay down at night and sleep free of harm, the cold, etc.  And every person on Earth should have basic healthcare so that they have a chance at a decent life.  That is all pretty simple and so NOT simple here in America for so many reasons.... way before both Clintons, Obama and even Trump came along.   Our healthcare crisis has been developing for 50 years or more.  No one was paying attention...none of us until the crazy bills started coming about 30 years ago.....and still no one paid attention.....no one that was really willing to try and change anything....

During this time Insurance Companies expanded their power immensely in their lobbying of Congress and their economic worth relative to our GNP (gross national product)...Medical Insurance companies are huge....if they go under we could have a depression.  They also paid many political folks by donating lots of money to campaigns.  Why don't we ever discuss the insurance companies and their role in all of this......???   They paid reps from all parties to be quiet.  Sad indeed. Maybe we can change this.  I want to hear from them.

In order to really change the system to anything that works better in truth....we must hold all responsible parties accountable.

The Insurance Companies ........where are you?  I get it.....The least CEO makes over 18 million a year and that is without bonus........

So.....suck us dry.....we loose houses...can't pay for meds.....people die without proper coverage....people choosing care over food.....How as Americans did we let this happen?

Disgusting.....Step Up ...Rise Up......


Tuesday, May 9, 2017

Cancer Survivor....About Acknowledgement and Long Term Survivorship

Over the years I have done much communicating with cancer patients in person and on line.  One of the number one issues they face is the feeling of acknowledgement on so many levels......

1.  Acknowledgement of the illness itself
2.  Acknowledgement of the fact that the person is still who they are and not just a disease
3.  Acknowledgement of fear.....death...not living a full life....fear for family and friends.....fear that people will run from them....the list is endless.....

Acknowledgement does not mean acceptance...it can just mean that I have a problem now how do I fix it....if it is fixable......and acknowledging something that could be hospice and death.  I am not there yet however I know many that are in hospice.

Today is an expression of my love for other long term survivors like myself.....the endless medical journey......whether it is 3, 5, 10, or 16 years like me......

The mind blowing procedures that we withstand to stay alive and heart ache when we can not fix something.....a major body part gets a tumor and we can't fix it.

Because with our knowledge.....and research .......after so many freaking years.....shouldn't we just be able to fix it???!!!!!  We develop a mindset that we can fix anything......

We have survived endless surgeries.....new experimental treatments.....chemo, radiation, emotional and physical craziness....and we did well for the most part.  And yet when the real time comes....we can't believe that our bodies are dying and we can not fix it.  There must be something!  And we see the heartache in our doctor's eyes as they have nothing to offer us except love and peace.

I understand this. 

To my close Cancer people in Hospice Today....My heart aches.....I have seen many friends pass in these 16 years.  Each person that I become close to takes a piece of my heart and soul with them......I miss you so.  Because you are the closest person to me...to this life that I never asked for...but we do the best we can everyday because that is who we are.   And when I go someday.....I am sorry to leave You xoxox  Tomorrow back to the business of Healthcare.

Monday, May 8, 2017

Cancer Survivor....16 Year Cancer Patient Says.... a Lot Today..Update and Info

There are two choices in life......you sit around and watch the world pass you by and have fear....sometimes paralyzing fear.....

Or you have a bit of fear and do whatever it takes to make your heart beat with life and joy....a couple of times I have gotten in my own way however as of late...nothing gets in my way.....

If you have read prior posts here or googled me.....I am never shy ....but all of us experience fear in illness or where ever.....These days I just absorb it.   I have found when I am really fearful....there was no reason and when I feel fine that is when the unexpected happens...so I make a great effort to go with the flow....see how things pan out and treat people the way that I expect to be treated.  Until the deep warning signs emerge in my soul......

The last couple of days I have been at pre op for a liver embolization.  This is not an unusual procedure.  Thousands do it every year all over the world.....however I am an unusual person as last time I had any procedure was two years ago when I died and woke up after 40 minutes of no oxygen to my brain and about 3 days in a coma....a miraculous recovery indeed.

Yesterday was at a visit with the head of anesthesia to make sure this does not happen again....hence the fear .......caution on my part and many questions..... and they too wanted to make sure as a patient that I was ready for this as well.

And then you sit and talk to people and you realize that perhaps the whole event could have been avoided for a couple of reasons....and then you realize what actually happened that day you died...really happened and the longer you sit there ....the angrier you become.....I hid it well.  I sat and listened and made friends.

So now I am sending a letter today to the doctors that declined my care....the anesthesiologist that was my doc that day in the ablation where I died and woke up 3 days later for no reason at all....

2 years later ....and two meetings later..with 2 anethesiologists......including the head of the department...it is time for someone other than the doctors that saved my life that day.....It is time for someone to F'ing say.....I am sorry!!!!!  Say to this patient.....I am sorry for what happened to you on that day!!!   And I can assure you in the next procedure that we will do better!

Saying you are sorry does not admit blame.....it means you are truly sorry! Cefotitan...the drug given to me that day is related to penicillin ...about 10 to 25 %....I am allergic to penicillin...why was I given that drug Ever? 

A lesson in advocating for yourself...speak up...don't let medical issues pass you by...save your life...be proud and speak up .....I am no patient....I have no patience for people that treat me poorly.

I am not dying from another "accident"...not me...not ever!





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 you...it is most likely that you should do it"  :)

During my 16 years of this .....I have had many ups and downs...money...other 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 years....you 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"..read and share

Today two years ago today, I was clinically dead for 40 minutes....no 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 peacefully...my 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 yet...my 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.  LOL...so 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 ride....it 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 it.....so 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 illness....now 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 fund.....is 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 work.....you may think an employee education class is enough...it 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 Chi...so 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 cancer....it is about your whole life....

I have found that for example....if you were shy before cancer ...in cancer that could be immensely increased.  If you are naturally a screamer...you 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 cancer...it is life....

You still have to raise your kids, take care of your parents, go to work, maintain your care, etc ...you 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 day....in health and cancer...I ignore them....or accept them and move on anyway....how 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 control...it 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"...in 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 why.....my docs call it a miraculous recovery.....in 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, chemo...my medical records are way over 10,000 pages.  I am scanned every 3 months since 2001.  And yet here I stand ....in various capacities...lol...everyday.

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

Come on over!

Thursday, March 30, 2017

Cancer Survivor......I am Going To Be 60...and 16 years of this Shit :)

Well my 60th birthday is approaching and I have had cancer over a quarter of my life.  I was always so freakishly healthy.....I discovered something was wrong while running with a friend and I just could not keep up...no matter what...I could not catch my breath.....something was wrong.  I went to the doctor and the rest is history....over 600 posts here and advocating for other crazy people like me all of these years later.

I have no clue what to do for my birthday on this particular year with so much cancer although able to run around quite well.....In my soul I have no clue! 

I am trying to stay away from the thought that this may be my last birthday etc.  That gets old.  I have been thinking that for many birthdays ...lol...and it is not productive to do that.....

My 40th birthday I had a roller skating party....rented out the rink for the day ...I stayed on skates for 6 hours and had a blast with family and friends.....the kids had a ball...hard to believe that was 20 years ago and cancer was something other folks dealt with.  At 40 I did feel 20........oh those days.

At 50 I had a great day with family....and my Ex gave me an entire day at the 4 seasons with him...so I will not discuss that here.  :)  I don't miss him but I miss my healthy body at that time.....even in the midst of cancer....Your health can rise.  But sometimes relationships can not. 

I have no idea how to celebrate this birthday.  And I do believe in celebration without question.

I want to do something awesome just for me......I don't know what that is anymore xoxoxo To be continued...........Maybe we will work through it together....what do you want to do?


Tuesday, March 28, 2017

Cancer Survivor...Ok....One More Post This Week on Survival

I have written about this before I know....not sure where....Lol...a couple of cancer friends of mine are very sick....not here much longer kind of sick.

It is at these times that I feel cancer even more and my heart aches ..literally aches. I guess I could run from being friends with other cancer patients....but I know what that feels like by the folks that ran from me over the years.  It is painful and the folks that see me on social media that I never actually hear from.

So I can not run away.  They are incredible people that got stuck in this just like me....this endless medical blur with no end in sight until you pass away...regardless of the actual time...3, 8, or 16 years...or more....and it is not just cancer......any long term illness.....

Everyday is a mental exercise of being yourself other than your illness and over coming the battle in your brain to move ahead and just be you...whatever that is for you.

My friends in the fight that I have lost ...some like sisters that I never had....I miss you ....I miss you more everyday....I see you and hear your voice as I go about my world.  The only thing I can do is to try my best to keep living the best that I can.   That is my only way of really honoring you.

I look at the small gifts that people have sent me over the years to remember them by and I hold them every so often and think of you.....they are priceless.  One in particular is a pink beany baby pig that my friend held until she passed......and passed it on to me....it was her Dad's ...he passed from cancer as well.... I hug it every so often and think of her.

Or the letter I have hanging on my wall from Laura.....I think that I have the words memorized ....

Everyday we do the best we can.....that is it....but do not give in to Cancer on the emotional front....long time people...learn to carve out a life.....you have to make a life.....you do not know how long you will actually survive...look at me ...almost 16 years and even waking from the dead!

Who knew?





Monday, March 27, 2017

Cancer Survivor.....Medical Update and Not Here for a Few Days

Hi All....

I am Ok and not here for a bit...I have some Medical to Do. 

If you are reading for the first time there are about 600 posts...read away.

Every time I think that I am finished writing ...I am not...it is truly my therapy all of these years.

Lately it seems to be more serious between my growing tumors and our healthcare crisis.

I think things will get better in healthcare...not so sure about my tumors  ..:)

There are so many all over.....I have never been here before...but I have said this before and I stayed here.

In any event I will keep writing because I enjoy it so much whether someone reads or not! 

Wishing you all a good week...I will be back shortly xoxo




Saturday, March 25, 2017

Cancer Survivor....The Art of Cooperation....Fix It!

As a sixteen year cancer patient I feel it is time ...how do you feel.  Please join my Facebook Group, "Treat Your Healthcare Like a Business".   I will do as many teaching videos as I can for patients to learn how to advocate for themselves.  You should watch.

I also want to call on all people in Congress from everywhere....to finally join together and fix this crap......fix our healthcare system so people do not go broke when they are sick.

So people do not die from Lack of Care...

So people do not die because they need to buy food instead of medication

So people do not die because they can not see a specialist

So women and men don't die because their preventative care is not covered

So people don't die because of underwriting issues and are denied coverage

The list is endless

And of course ....INSURANCE COMPANIES.......we want to hear from YOU...we do not ever hear from you.....step forward and be accountable to the people ......

Politicians stop covering for insurance companies!  Make them step forward and speak ....be accountable for your actions.....You never have!   I dare You!

The time is now to Cooperate and get something done.......

Decent Healthcare is the one issue that we all have in common....let's do this.

Before I die please....I want to see this done!  16 years is a long time to see nothing done!




Thursday, March 23, 2017

Cancer Survivor...House Freedom Caucus, Paul Ryan, will eliminate the Middle Class in America

I may or may not be dying now however I will never stop typing until I am dead or we have decent healthcare!   The later coming first I hope!

The passing of any form of this bill will eliminate the middle class from the United States. 

Not covered and basically killing everyone....is the elimination of these services and so much more...

1. All Emergency Services
2. All Maternity Services.....because being pregnant is a pre existing condition.....Right?
3.  All Mental Health Services....
4.  Addiction Services
5. Outpatient Care
6. All forms of Birth Control
7.  Underwriting brought back as a form of premium hikes and denial of coverage...

On and On and On...but you can still buy eyeglasses with your Health Savings account and get a tax break! LOL

There is no health insurance plan in the House Freedom Caucus....just more money for insurance companies and the ultra rich....Your life would be ruined here....

And Ryancare is a huge tax write off for the rich as well....do not be fooled.   People will die.  The middle class will melt away in non existent healthcare.   Don't allow your life to melt away.....I beg you.  Your life is at stake today.

Tuesday, March 21, 2017

Cancer Survivor...One more Thing...Friendship and Cancer

Before I must go off for a few days.....Many of you know that I am doing this dance almost 16 years.  Along the way I have met the most amazing people from everywhere...all over the world...every religion...every color ...

Many of these folks became my friends other than cancer.  We got to know each other as people...family...friends etc.   It was a natural process....I met in person people from all over the world and in my own neighborhood.  And many of them are dead.  I watched them die ...they watched me be worse and then better....

And often they will apologize for leaving me to go on by myself in illness and perhaps my own death....at some point right?   I must tell you and them I have no regrets in these amazing friendships.  I only hate my heart break at watching another amazing human leave this Earth too soon.

Some will apologize about discussing death with me .....they will discuss things with me that they cant tell their families and even closer friends because the thought of them not being here is just too painful to bare.

I don't leave them when these talks are needed the most and I may be the only person willing to listen at such difficult moments.  Sometimes I say nothing....there is nothing to say...to just listen...

I guess I want you to know that every person that has been my friend....I miss you ...that I think of you a lot....I keep the letters you have written me over the years and gifts and I look at our pictures....and some amazing adventures that we have had together.

This cancer journey that has been horrific in my opinion....You all made it bearable for me...without you I would have been very lonely.  You are in my heart always and if heaven exists I want to spend that part with you as well.  I miss you forever.

In cancer some healthy people ...they will run away from you or you might barely hear from them ever......some folks just do not possess the amazing gene for kindness and compassion...some think all they need to do is serve food at a homeless shelter once a year....and all the other days they spend running....don't be a runner.......open your heart and help someone once in awhile.  It's an amazing feeling.   

Cancer Survivor...Be Back in a Couple of Days...Pay Attention to Healthcare Bill!

Hi All...Thank You for reading...I am not here for a few days due to Medical Stuff.   Thanks so much for reading all of these years....

Keep fighting for healthcare...negotiate medical bills, etc.

Tell you reps to stop lying and be accountable!   If they are not do not vote them back!

Be back in a few days

Thursday, March 16, 2017

Cancer Survivor.....Go to the Beginning...Find Me ...Find Yourself...and Rise

I have over 600 posts here and have cancer almost 16 years.....I have been typing since 2009....

Someone asked me today why I fight so hard for myself and others....

I would suggest that you go back and read from the beginning moving forward.  It is there that you will find me.....the cancer side of me.....

That person that had about 15 major abdominal surgeries....2 chest ports, 2 stomach ports, 2 chest tubes, a pic line....about 6 chemos and immunotherapy... and a heart attack in 2015 where I died and then woke back up....known as a miraculous recovery......and last not least....video assisted thoracic surgery known as VATS....oh and SBRT radiation to my lung, ribs...

I am not sure my kids remember me without cancer. 

I have seen people go without food for their care or for their loved ones.....homes lost....no money for rent in a timely fashion....

I watched a 24 year old kid melt away because he never bought insurance and died of a Sarcoma.  All he could get was Medicaid at the time ....there was no ACA and he died ...a young man working his way through college and waiting tables .....his entire life ahead of him.  Dead because of sub standard care.

I encounter everyday sick folks not understanding how any insurance works or does not work....I know many who understand it and still it does not work...

So Congress I could go on forever with real life cases....don't care what you call it ....get our healthcare to work for all....for all of us.....We are watching....no more lies....no more pay offs...no more bullshit.

For my 60th birthday in June.....I may just carry a sign and sit at your door step ....the steps of Congress....with my sign...I am coming ...maybe some folks will come with me?

Join me tomorrow in a Facebook Live Event in Treat Your Healthcare Like a Business...9am Pacific Time.


Cancer Survivor....About Town Hall Meetings and other Healthcare Stuff

Are you attending Town Hall Meetings?  There is growing evidence that your representative says one thing to you in person and then goes back to Washington and does not follow through.  This means that we are being lied to....in person ....on video so that there is proof.

Go look up how your Congress person votes after a Town Hall Meeting and know the truth!  Don't be fooled!  We voted them in to stand by their words and act with honesty and integrity.  Many of them have lied!

We are also not hearing about the far right that wants to have caps on insurance coverage......still have underwriting as a form of denial of any coverage...

Make sure you know where your rep stands and how they vote in person...in Congress.

I am sick of the lies....aren't you?

Long Term Care Info

The average cost of Assisted Care Living.....at least $4000 a month.....could be $15,000 a month with dementia

Informal Caregiver Cost......about $15 an hour

Nurse Visit ....about $25 an hour or more....

We will talk Long Term Care tomorrow.....and why understanding what this is critical to your care.


Cancer Survivor...Congressman Mo Brooks of Alabama

Senator Mo Brooks of Alabama last night on MSNBC stated that he would like to bring back caps on Insurance.......bring back underwriting as a form of denial of coverage, and on and on.   All he was for was the lowering of taxes....

Taxes will be less because you will be dead......He wants even more limited coverage ....Paul Ryan is not the  only one....unseat this man in his next election.....he does not care about you...

I have some questions.....

How much money have you taken from Health Insurance companies in campaign donations or otherwise?

What is your health insurance coverage as it stands today?

What is the basis for your extreme idiot viewpoint?

Please folks....pay attention to how your party is actually voting ....and why......your life is at stake.

Make every person accountable regardless of party!

Mo Brooks.......We will unseat you next election....Pay attention Alabama....

Your state is beautiful and folks need help!

Monday, March 13, 2017

Cancer Survivor......Off Topic.....How Did Everything Get so Crazy...an Average Person's Opinion

I have been typing since 2009......have cancer since 2001.  Even back then health insurance was crazy...people were going broke.....we just did it quietly....there was no social media.....we thought maybe it was just a personal issue...many were too embarrassed to speak up about these issues....like 5...10 ...15 ...20 thousand dollar medical bills or more.   No one really knew that you could fight back.   It was the beginning....

As well we did not pay attention too much to big business and the fact that there were lies everywhere in both parties......there  was a ton of lobbying ...politicians on all sides of the fence were accepting campaign contributions from Health Insurance Companies......frankly...we did not stand a chance.....and we were not paying attention because we wanted to trust the folks from everywhere that we elected to office.

One day we realized what was going on......all the lies piled up...our healthcare sucked and we went looking for someone to blame....

Then more and more lies ...they got bigger ....broader....and everyone was doing it....everyone...

Then we realized how much our elected officials just wanted money, and power....including those elected recently...possibly more so recently.

So now we don't trust anyone and we still have crap coverage.

I want to trust someone....actually more than someone...so I am calling on both parties to Rise.....say you screwed up and fix it....

Don't care what you name it....fix it.....Speaker Ryan...You may need mercy when we are done.

Healthcare is Human Right...good, decent healthcare....stop lying to us.  Fix It!

Life is simple....people make it complicated.  You can fix this to make the United States a better place.  So far I am not seeing it.


Healthcare 2017...Congressional Budget Office Release Healthcare Costs and it is Horrific...Just Say NO!

Speaker Ryan...You need to apologize....Folks take a look...please go to www.cbo.gov and see the real story on this plan.

And let me be honest......The Affordable care Act needs much improvement.....it is far from perfect. 

I call on both parties......especially as of late ...Speaker Paul Ryan....I need no mercy....I need no more lies.  I have cancer for over 15 years....a quarter of my life.  I better than you understand our healthcare system and how it works.

Grow some empathy...grow some sympathy....be ADULT....stop acting like a 2 year old.  Do you want this to be your legacy?  That You uninsured millions more Americans?  That you gave CEO's of all the healthcare companies Tax breaks?

That you lied to Americans telling them that Health Saving Accounts will be an option for them when they get sick?

That everyone's healthcare plans would rise a minimum of 20 per cent?  On and On and On....

You can also see posts from me in Facebook in Treat Your Healthcare Like a Business.

I am just going to keep going until I die fighting for us.......

I dare you Speaker Ryan to speak to me about Healthcare....stage 4 plus cancer survivor...I dare You

Read my 600 posts and then let's talk.  I am here for You...lol

More tomorrow


Cancer Survivor.....How to Advocate for Yourself In Your Changing Healthcare Needs

Sometimes you are up and not.....when you are not ...how do you get and receive better care in all ways?  Here are some tips......

1.  Call a family/friend meeting...and I am serious....pick a day and a time and invite folks together to meet with you to address your care in a non emotional productive way.  And folks appreciate this immensely....people want to help you....they don't know how...you have to ask/teach them.

2.  Make an agenda for this meeting.....inclusive of your time schedule and exactly what you need....a ride to the doctor....a laundry done....a social coffee time....chemo help...surgery recovery....whatever you need....babysitting....a screamfest :).....you understand.

3.  In this agenda please be honest and not too proud...asking for help is a luxury....some folks have no one to ask and in a separate post I will address that as well.   Ask!   People love to help if you tell them what to do!

4.  Have folks sign up for stuff and times.....please ask them to notify you if they need to cancel...or change days etc.

5.  You can do this all on line.....even make a friend in charge of your schedule in getting folks to help....even a secret Facebook group might be the easiest way to communicate with people.

6.  Do not feel guilty about doing this.....Cancer or any illness is not your fault!  Having some control over your life in illness makes you feel good because you are advocating for yourself.  That is the real issue over and over again is learning how to feel good about life in the face of adversity!






Sunday, March 12, 2017

Cancer Survivor....How To Really Help a Long Time Survivor

I am very a very lucky person.  That sounds crazy right?  But it is not.  I have had for all of these years some really magnificent helpful people.  I am so grateful and thankful for those people new and old.....however as time goes on and based on my experiences, I thought I would type a revised edition.  This is due to the rise of social media as well.  Here we go..

1.  This is very old school....Just ask someone how you can help them....really...just ask.   This is the most difficult thing for people to do both in person and on social media and here is why.
   A.  Almost everyone has a preconceived notion about how they want to help you.  This is based on their belief system and what they think that you need based on how they have seen you both on social media and in person.....but really just ask!  We may need something so totally different than what you are offering.....It could be just some chicken soup! 

2.  A couple of things to keep in mind.......
   A.   Our concept of time and how we feel.....with a cancer patient going through treatment...our time could be summed up by the minute ...second...hour ....day etc....its hard to plan and we never know how we are going to feel at any given moment....a presumed schedule is hilarious....so I like to do things fast...any way that is accomplished...not because I may or may not be dying.....but because this is the moment I feel good .....very simple!

 B.  Social Media.....I look good there and in person still despite having over 15 tumors all over my body.....that is deceiving....I get it.  I have a gotten a little too skinny....I am trying to eat...it is not easy...  I feel like most people think that I will be here forever and you can take your time finding me.....and I hope that is true.....social media can be a lonely place for cancer patients.....if you know someone around you that is not well...nothing replaces an in person visit or even a phone call....don't be afraid to call someone....even if you do not know what to say....

I am not really writing this particularly for me....this is one big issue in long term cancer survivorship...people living with cancer....not everyone is crazy like me trying to run around.....to say to a person ...call me if you need me is just awful....You call them ...they will not call you.  15 years of supporting folks I know this.....more tomorrow....


I joke around in support group and discuss this with my fellow folks in treatment etc....do not be a surprise guest at a funeral......You know who you are...that person that lives within a few miles of the person that died....never calling or contacting them ....and yet you show up at the funeral to say good bye?    Really??   Don't be that person!






Friday, March 10, 2017

Cancer Survivor .......Update March 2017

I will be 60 in a few months.  Today is the anniversary of my Mother's passing.....8 years ago while I was in the hospital during one of my surgeries.  I had seen her the day before my surgery.  She said that she was leaving....that she could not wait for me ...she passed as I was recovering in the hospital.....on my third day there.  I arranged her funeral from my hospital bed with the help of a nurse. 

Tomorrow would have been my childrens' Father's 59th birthday.   He passed of a heart attack in 2006.  He died at 47 years young.   Everyone that knew him misses him immensely.  He was loved.

And here I sit with having cancer over a quarter of my life.  For many things in life there is no explanation.  People might try but some explaining is a true waste of precious time.  And then other things are never explained enough.

But there are a few things I know for sure........

I know if you choose anger instead of compassion and kindness then you will be a miserable human being even if you have everything...or think that you do...

I know that if you worry and complain all or most of the time.....that your life would be a waste of your time truly.

I know that if you stop being curious and you stop searching that indeed you will have wasted your time again.

I know that if you live in the past ...that is where you will stay forever... missing the present and perhaps your future...

Memories are fabulous but do not stay there....no reason too.....

I know that you must let go not only of things .....but of people...of memories....and especially how you think that you should have lived...

If you can do that....then there is much life left....It is not easy but you can do it.  You must.


Thursday, March 9, 2017

Cancer Survivor......Why Does Healthcare Need to Be Horrific before It Can Be FIXED?

Dear Republican Party.......I am trying to be non partisan in my post.  You have made it very difficult for me to do that.

I want to live in a society where my government representatives don't act like lying, hiding infants.  I want to live in a society where my Speaker of the House does not do his job as an act of mercy.....that is the most insulting comment....Until I die of cancer someday I will not forget that you said that.  And I will make sure that you don't forget it either in my writings.   You need to apologize.

You are supposed to serve the people.  You are only serving yourself and a few that think like you.

I want to live in an inclusive society where my government reps make an effort to compromise and get along even though they believe differently.

When I advocate for a cancer patient living or dying I do not ask them their political beliefs.   I just help them.   When you drive seniors out into the streets from the costs of Trumpcare/Ryancare what will you say?   Who will you blame?  How will you be Accountable?

Our current system is flawed and needs fixing.....be honest and fix it....general bull shit in the media does nothing...

You are afraid to really discuss the particulars because you know that you screwing the average person.

I dare you to discuss the details with me.   I dare you....debate a cancer patient.....of over 15 years.

I dare you

Monday, March 6, 2017

Cancer Survivor.....Go High and Go Small

Perhaps off topic......however it is important to know this as a cancer patient or anyone really.....the world has gotten to be very big and we are expected to care about so much.  Maybe the real issues to make the world a better place is to care about just your self more.....

It is like flying in an airplane and God forbid there is a problem and the masks come down for you and your kids....you have to put the mask on yourself first before you can help your kids....It is common sense.

So with social media ...all media....and everything else going on in your life....you need to take time and look in to yourself and fix what you can ...this is the hardest part of life....the scariest....and if you continue really the happiest and most successful.

I see such angry people everywhere...I can only think that they are too scared to look in and see what is really going on.   Anger is the easy way out.  Finding real solutions to your life's issues....looking in....that is the hard part.

Recently I chose to make my life much smaller.....less wasting of time on social media etc and really making it more about just me, family, friends....etc.   What is that to You?

Is that doing your paperwork ...looking for new life path.....trying to get well...planning for an important event.....getting your treatment organized....or even just that movie you want to see?

Don't forget yourself ....don't forget who you are and who you can be.......the world is so big!

Make your life big ...even if it is just for You.....Go high for yourself and small....

When others see you happy, joyous and perhaps just content....the right folks will join you!


Sunday, March 5, 2017

Cancer Survivor ....A Real Talk About Money

Yesterday I saw on Facebook that a couple of people that I know but have not seen in a long time are struggling with first time cancer.  My heart breaks when I see this.  Doing this for almost 16 years my heart aches with knowledge and empathy for them.

They are the kind of folks like me....always exercising...eating well and never thinking that this would happen to them!!!!   They are young!

And they are having big money problems....Lack of money and illness go hand in hand often....most always in today's times....so here are some money tips in illness.

1.  You must have an emergency fund....at least a year that can support you if you become ill.  This is liquid cash....not somewhere where you can not get it.  I don't care if you have to give up something to save......giving up while you are healthy is fine.   Giving up all of your possessions and home while you are ill is not OK.   It is a heart breaker. 

2.  Seek out a real financial counselor.  A person with years of experience...lots of letters by their names....has an office and an assistant. 

a.   They are willing to explain everything and sit with you no matter how long it takes.  They are not just representing one company in insurance.   Don't buy anything or do anything on the first visit.  Get a second opinion if necessary.   If you are uncomfortable meeting alone take someone with you.

Financial Counseling is not only for wealthy people.   You must start somewhere.  Start now.  Don't wait until something happens.   If something already happened go now!

3.  All medical bills are negotiable.....all of them but you must catch them before collection .....I wrote about that in here somewhere.....not much has changed.

4.  If you have a cash value life insurance policy and you need money......go to your agent or company and find out how much it worth......and the rules for borrowing .....get a complete policy review with an in force illustration.....it may be much better than your credit card.   Try not to use your credit card.  That is the killer.

5.  Remember before you borrow ...how are planning to pay it back.  Can you ever pay it back?

6.  Don't be afraid of medical bankruptcy....get a consultation.  Sometimes a fresh start is all you have.

Don't loose yourself in misery.   Rise to the next adventure.....Be organized.   Take control of what you can and rise.   Its not over until you are really done.

I am that person.......ups and downs over all of these years....I will keep rising until I am done xoxo


Saturday, March 4, 2017

Cancer Survivor.........Chemo Therapy and Cancer Sucks

Chemo sucks!!!!   Yondolis also known as Trabectin.....I hate it.  It is every 21 days.  You walk around with a pump for 24 hours.   Then the next day you get fluids and the next day a neulasta shot.  It is made partially from sea weed.....save the environment!

This is  my millionth chemo.   After the first dose it took about 10 days to recover.  A few of those days due to massive headaches and rest room issues I wanted to be done.   I wanted to leave the Earth and be at peace.   I lost 5 lbs.   I am supposed to show up again on the 14th to do the same thing again.....seriously?   I am having a hard time doing this again.

It is at these moments I think in fleeting thoughts....how much vitamin C, cannabis, hocus pocus, turmeric, and vitamin A can I consume to either cure myself and/or kill myself?

I am already researching something else to do.   And here is the issue.....I must do one more dose to see if it works.....but doing this drug forever for stability?  I do not know how.

There are many trials coming in the next couple of years.....

I want a massage and melt it all away.......

I want no more cancer ...in July it will be 16 years.  First surgery was in August of 2001.

This blog is my therapy....perhaps I should read back and follow my own advice!

On second thought today I should just scream.....I feel good today....I am just going to scream....till I have no more air in my lungs.....

I myself need to Rise xoxo

Thursday, March 2, 2017

Cancer Survivor.........Healthcare and Politics...101

I have stage 28 Cancer...remember I like Stand Up comedy......I entertain myself often because if not me who?   Truly...If Not Me Who?   I am typing since 2009.  I have cancer since 2001....almost 16 years. 

The other day I was asked why I have become so political as of late.....I wanted to laugh because I thought it such a stupid question......I have always been political.....non partisan in healthcare...I have always advocated and stood up for people that are ill and disabled.  Nothing has changed....but actually they have....things are getting worse...not better..so we must speak up more...bluntly and openly.

And I am not involved in the controversial issues....you will never see me screaming here about abortion, guns...etc .   This is all about healthcare.

Like the woman that could not get her IV Bag for fluids......
The man that could not get a possibly life saving chemo drug
The single Mom with cancer that could not get the money from her disability policy because they denied her what she paid for ....for years..
The insurance company denying care to a woman because she was fat.....

The list of atrocities committed against the public by health insurance companies is endless.

You have a choice...to be accepting and silent or speak up.   I choose to speak up...every single day until I die.

Wednesday, March 1, 2017

Cancer Survivor ....Health Insurance 102 ...This Is You?

Yesterday I went to my Cancer Center to give blood.....in the waiting area was a simply dressed woman walking with a cane.....bald...ill and gorgeous in her day.   She was in the throws of chemo.  Sad as well....in her 50's like me I believe.

A nurse walked up to her to let her know that because of her insurance,  that she was not allowed to get her IV of fluids until the following day.  Her insurance company has it's rules.  My heart ached for her.  She said nothing.  She calmly raised herself up, grabbed her cane and walked away.   I slipped her my number to call me about that insurance.  No call yet....she might have thought I was crazy.  I was at that moment!

She was clearly dehydrated and in need of care.   I hope that she went to the emergency room!

This is our health insurance system dictating our care...not the hospital, not the doctor...none of the people that are supposed to be doing this. 

This is the issue again that unites us as a people regardless of where you come from!   Don't allow those who do not care......who do not understand.....who just want money....that have no emotional investment in your well being dictate your care!

A cheap life saving IV bag of fluids for a suffering human being....be ashamed.

Please share this.  Please Our lives are at stake!

Monday, February 27, 2017

Cancer Survivor ....Health Insurance 101...Today Is a Big Day

Today the President is meeting with Health Insurance Executives.......so let's have a non partisan talk about the stakes.....

A few reminders....

1.  Health Insurance Companies have one of the largest lobbies in Congress in recent history.....all parties.....campaign contributions are made...many folks on both sides bought a long time ago.

2.  Health Insurance Companies are responsible for 5 per cent roughly of the entire GNP of the United States.....That truly is huge. And I mean truly huge with no pun intended.

Health Insurance Companies are powerful.......really powerful .....we let this happen over a period of about the last 50 or so years regardless of who was president.

No matter what happens....The Affordable care Act does need fixing without a doubt...it was not well designed because of insurance companies requiring a certain amount of power and profit.....see my prior posts.

But what is at stake...?    Your life and your money.....

You must believe that decent healthcare is a human right as a citizen of this country.
A pre existing condition should never deny you insurance and/or decent care.
There should never be a cap on coverage.....many would die in the streets

Science and research should be supported always.

This is not a party issue...this is a life issue.....Next post discusses real coverage.

I was joking with a friend saying that I hope that I don't die during all of this political insanity!

Opposition.... without Hate....that is me....I want to fix healthcare.....its so broken!


Sunday, February 26, 2017

Cancer Survivor............Thoughts on Cancer Survivorship

I find it hard to believe and not that I keep thinking of things to write about.  I think sometimes is there anything that has not been written about in cancer at this point?  And then I realize I must keep writing.  I have no defined agenda except to help someone.....I think often of a book or series of books but at this point I am so very tired ......this is easy....writing here is easy....these days I love easy.......so here we go...

I have wondered about death for a very long time......without thinking that I am dying....April 24th is my 2 year anniversary of my miraculous recovery .....being without oxygen for 40 minutes and eventually waking up without any memory of the entire event!  I have previously written in here about it so I will not get detailed.....I am happy to not remember the medical details of keeping me here.....it was crazy.  My surgeon saved my life.

So here I am now and I think I am dying slowly....but this time really dying.  I am not wondering about it.....I know it.  I have disease in every major organ of my body except my heart and brain...thank you.   Really thank you......for staying out of my brain all of this time.  And my heart.

I know the answers will come....but after this chemo I am not sure what to do next and if I should do anything.  What if I miss the last year ...or whatever of my life because I am killing myself with drugs?   I am not asking for advice.   I am just talking out loud.  Not being able to eat ....sitting on a couch.....not able to go anywhere or do much......that is not life.

I might give it one more shot to see if it is working ....I must...but even if it does work ...what life is this?  It is not.....and what is the goal?   If I get shrinkage.....another huge surgery?   When is there a life?   How far do you go just to stay here?  There are no answers....I will have to figure it out along the way........or not ...sometimes shit just happens and there is no thought process necessary.

I know many of you get this and I am sorry....the folks that do not get it....Thank Heavens for that!


Saturday, February 25, 2017

Cancer Survivor.....The Emergency Room

I have been in emergency rooms enough over the years......it comes with an extreme case ...here are some thoughts......

I understand that emergency room docs, nurses etc are under extreme pressure.  They have to figure out in the shortest time what is going on to save a life.....I love my docs and nurses however they need to understand a few things about smart, extreme patients in the ER

  Practice better listening skills.   This is big.  I still have all of my marbles (lol)....no one knows me better ....my body...my history...than me.    You coming in and telling me what you will be doing before you even talk to me ....No...NO...

As well as trying to give me calming drugs like Ativan immediately once you discover that you actually have to have a real conversation with me....No....I don't appreciate drugs just so that I will lay there nicely and not talk to you...NO

Stop telling me that I am a nervous lady......you will just make me angry and less nervous...thank You...

How to deal with ER people that don't know You....After the initial insults........I said to the nurse...

1.  I have been a patient for over 15 years......I have had about 15 major surgeries....6 tries at chemo....SBRT radiation...etc ...I live with tumors since 2008......doing this since 2001......I would really appreciate it if you would listen to my words and look at my history before we have a talk about everything that you are going to do.   I may be able to help you.  And please stop telling me how nervous I am????    It has no baring on my case or the reason that I am here today....is that correct?

I starred into her eyes....do that ...stare...they must look back and after that everything changed.   If you cant do this for yourself.....find someone to do it for you.  It makes a huge difference in your care.

I dread the day that I can not speak for myself.......I arranged a few folks and my kids to help but I feel better when I take care of myself.  Do You? 




Friday, February 24, 2017

Cancer Survivor.....I am Back.....Update Amy

Well...it has been one hell of a week....I said this elsewhere....Sometimes I have no words about my personal journey of over 15 years.....Sometimes I just sit at home with a mix of wonder, sadness, anger and gratefulness. I made it home once again.....sometimes the gratefulness is lacking....I don't cry much anymore at all......certain things might set me off for a minute.....like a song....or a statement from someone close to me......this journey has been so long......I can not let it evoke such huge emotion......because I know that more bad stuff is coming.

I am still appreciative.....I love the folks that take the time to really care for me or another person....that nurse....that doctor.....friend ...Daughters.....etc...anyone that takes the time to say or do something extra along the way.   That still makes my day.  I always joke that you are born with the caring gene in extreme illness or not.....but I think that it is true.....Some just can not do it..

I hate it when I can not do everything by myself.......Your mind is rushing to accomplish things and yet your body says no!   But I am going to try.....you know that right?   If you have been here since 2009....You know that 15 years of this shit....I am not done.....

I am not done......even if all I do today is type and do the dishes....I am not done...

I hate you cancer....I marvel at all of us everyday willing to do so much to stay here.....we do the best we can......

I am dying on my terms someday.....not yours

The next posts will be a mix of personal and non partisan political.....its just where I have been the last week or so.......in our healthcare system deep....we will talk xoxoxoxo


Monday, February 13, 2017

Off Line Until Feb 16th...

Sorry folks...being a cancer patient is full time work and I must go take care of myself for a bit.

I had an out patient procedure and got a bit behind ...lol....I know right?  Oy

I will be back shortly.   Wishing you all health and fun!

Tuesday, February 7, 2017

Cancer Survivor ....Healthcare Debate 2017..Dear Ted and Bernie

Dear Ted and Bernie....here is one thought and what you missed in this debate...non partisan...

Comparing care here to other countries is nonsense...here is one true story pre ACA

Please meet Jay..name changed...true story...Jay had chest pain for a long time....he was a waiter and going to school.  He could not afford health insurance as a student.  He went to the doctor and had a sarcoma in his chest wall.  He could not get insurance due to pre existing condition.  He died in his 20's because all he could do was go to the hospital that accepted Medicaid.  He never saw a specialist for his care.  He had a few chemos assigned by the Medicaid folks and died. 

This is an example actually of a mix of private insurance not accepting a pre existing condition for real insurance and the government allowing only the minimum of care.

The issue of real patient centered care and insurance is very complicated.

More tomorrow...I am organizing more thoughts to discuss.


Cancer Survivor........Personal Medical Post...Looking for a Sign...etc

Cancer is mind boggling for so many reasons....one post is not enough....that is why I wrote over 550 of them and I still have stuff to say.....after over 15 years ...it will be 16 years in August.  I will be 60 over the summer....at least I am trying.....lately the job is more difficult.....

I only know a few other folks like me.....with continued disease ....a never ending shit storm of medical stuff for so many years...and I guess the fact that it is never ending until you die...however long that is.....that is the hard part.  

Somewhere deep in my snobby soul I thought that I might crawl out of this for awhile.   I thought I might get to a place where my medical procedures would give me a break.....I had two big breaks in the very beginning.....4 years and then 2...but never again.  I have been going with disease non stop since 2008....I always tell my fellow survivors to remember who you were, are and could be.....even in cancer....lately I personally must remind myself even more.  I am tired..

But then comes a sign and the will to fight comes back and I know that it is time to rustle up the troops and forge ahead.....no matter the outcome.   I am still tired!!!!!   But OK...here we go.

What's your sign?  My sign are my kids tears.....when I see or hear tears on the phone. 

My kids were 11 when I was first diagnosed.  I made small goals....to watch them graduate grade school.....then middle school...high school and college...then get jobs, travel and have fun....

I guess it is time for some new goals......and I when I allow my 10 minutes today of sadness, I remind myself how much I actually have achieved all of these years.  Don't forget who you are....I won't.

At least there is still coffee and chocolate...Thank Heavens




Monday, February 6, 2017

Debate Tuesday Night...etc

Please read the prior post about the debate.   You can find me on Twitter at AmyAdvocateLMS.

Facebook Group is Treat Your Healthcare Like a Business.

I am absent until Tuesday night.  I am seeing doctors and getting MRI's like I have done for the last 15 years.

I am blogging since 2009.  Healthcare and Cancer Survivorship may not be what you think....please read beginning posts as too. 

Lots of info still relevant today!   Thanks and see you Tuesday!

Thursday, February 2, 2017

Cancer Survivor....Cruz, Sanders Healthcare Debate Feb 7th...My Thoughts Pre Debate

Dear Senators Sanders and Cruz,

I have some questions and comments........

1.  Why are you having this debate?  It is not to educate or empower?  I think again we are being manipulated to be angry and adversarial.  I am so very tired of all the theatrical antics.  Enough is enough....don't ya think?

I stand with the entire United States in wanting decent healthcare....I stand with those against and pro abortion.....I stand with those pro and against guns....I stand with people of all parties, races, religions, colors, sexual orientation.....did I forget anyone?   This is the one issue that the entire nation needs to be united.  But you know that right?    You all know it.....that is the real reason for this so called debate.....if you screw healthcare up....the entire Nation will empty out into the streets.  This issue....Healthcare in this Country is the one issue that binds all of us together...and you finally know this.....This took 50 years to happen.  Don't screw it up.

2.  Lets first recognize your excellent Health Insurance plan...not part of any of these negotiations and your full pension that you receive until the day you die......

3.  Lets recognize that neither of you mention the campaign donations and health insurance lobby that really runs our lives as everyday people and neither of you will discuss this.  I dare you.

4.  Lets also recognize the facts that you will not discuss.......that health insurance coding dictates our treatments and lack of life saving medical care and drugs.....often at odds with our doctors.

5.  Why is fraud never discussed openly and ways to get rid of it......fraud is rampant in our healthcare systems.

I have cancer almost a third of my life...over 15 years.....you all seek to be adversarial and are using no real problem solving skills to get the job done. 

Where are all of the CEO's of the Health Insurance Companies?  Why don't you admit that for the last 50 years you all have been their puppets.

Show some balls Speaker Ryan.......Senator Sanders, and Senator Cruz.  You are all exhausting us ....I am sick of working the system for myself and others.....People are broke.....they choose medication over food ......loose their homes......we are angry, tired and many have died or dying.  

I dare you to have me debate the 2 of you.....

Wednesday, February 1, 2017

Cancer Survivor....Medical Insurance Premiums and Medical Bills....Making a Phone Call

Medical Insurance premiums have skyrocketed....I saw a post on Facebook where a person stated that it is like having another mortgage.  It is actually way more.  You pay the premium and then there is the deductible.  You also have to make sure that you stay in network or else your bills will be astronomical.

Some of the best doctors are charging a new yearly administrative fee to make up for the little money insurance pays them....and rightly so.  My surgeon was paid about $2,500 dollars for standing over my body for 9 hours and saving my life.....that is not OK...he should be paid more....like some doctors.....nurses.....teachers...police, and fire folks...they should be paid more.  I do not understand...or maybe I do...:)

Lets not forget the drugs ...the drugs that people actually need to stay alive....a fortune...not going there on this post.

The power of the health insurance company to insure the least expensive way to treat you until you die...rather than do what might keep you alive....often at odds with the medical professionals that want to treat you really well.   It is a daily battle for us .....cancer survivors with continued illness.

So here are some tips to figure stuff out ...........I know I should I write a book on this .....right now I am trying to figure out my future astronomical dental bill.....that is also an issue....the dental lobby is big as well....one of the largest lobbies in Congress.

1.  Learn a little about medical coding.....that is how your bill is determined.  Sometimes a diagnostic code is less money that a preventative code.  ASK

2.  I have learned as in everything that sometimes you call your health insurance company and that person has no clue what they are talking about....call twice or ask for a supervisor to verify.

3. Hopefully the phone call is recorded...write down everything and keep a log...date, time, person's name and badge number.

4.  Don't scream or be rude......just be firm, calm, and act like you know your stuff even if you do not.  I actually am quite friendly when I call these places.   And I tell the truth always. It might go like this.......

Hello....I am________.I have cancer for 15 years....I am very knowledgeable...however I really need your help today...this is my issue...oh by the way, I am taking notes and if necessary please refer me to a supervisor.   Before we get started do you have a corporate fax line just in case you are not able to help me?   I am very detailed and may need medical coding assistance......

I then lighten things up and say....I hope that you are having a good day...please call me Amy :)  More on this tomorrow....



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......