Saturday, May 31, 2014

Cancer Survivorship....Work/Job ..Post 3

An important aside to all of this regarding working...

One of my first professional advocate cases was not about cancer.  It was about a woman that had many physical issues for many years and it was time for her to stop working.  She just did not have the physical abilities any longer to perform her job.

I was hired to help her get her social security income. She is in her 50's like me.  I did not realize until I began putting together her case that she worked in a fabulous place with wonderful co workers.  They loved her so much that they actually performed much of her job for her so that she could keep coming to work.  They did it for years.

Due to this is was much more difficult to put together her case.  She seemed way too healthy for too long.  We were ultimately successful however here are a few things to consider in your work.

1.  I know working is psychologically beneficial as well.  Being around people, having your mind engaged is important in healing and living with any illness.  Money is as well :). 

2.  If you really can no longer perform your not stop working alone.  When I get to this section I will go into more detail however it is not a good idea to have others do your work for you if you can not.  It will hurt you in the long run when applying for your  benefits when you really need them.

3.  Keep a diary or what I call a "health log".   Write in it everyday...log days and times....what exactly are your job duties and what can you still do...and not?  Keep detailed records.  

4.  Detailed records will help you for 2 reasons....if your employer is trying to get rid of you have a log and proof of exactly is going on...names dates etc....if you want to collect benefits you have a detailed log as is your life.

Cancer Survivorship....Work..Your 2

Discussing number prior post as they will be in order...

You are going through chemo...radiation or had a surgery.  You are a full time employee and receive benefits from your company.

1.   Do you know exactly what they are and how they work?  Do you understand them?
2.  Have you visited or called your human resource person and have everything in writing connected to your employment?
3.  Do you know your rights as a full time employee?
4.  Do you have disability insurance?  Do you know how it works?
5.  Do you have an understanding of your health insurance?  How it works and what happens if you loose your job?

Answer these questions and come back for next post.  Thanks...I will actually add to this later today.

Friday, May 30, 2014

Cancer Survivorship...Your Job...Your Work

An overwhelming number of people deal with work issues going through cancer.

1.  You are not able to work for awhile and have no clue what your benefits and Rights are at work.

2.  You have lost your job due to illness and still need to work and can work....just not at your prior position.  You must re invent yourself.

3.  You can not work at all due to illness and need help.  We will explore this and more in the next posts this week.   Thanks...people have been asking for this :).  So let's do it.

Thursday, May 29, 2014

Cancer Survivorship...What I Really Think of Cancer ...Really

Just in case you are reading for the first time....I have been doing a rare cancer for 13 years in August.  It is now difficult for me to remember a time when I did not think about this disease.  I do remember wish I were her again everyday.  I have had about 15/20 surgeries total on almost every single part of my here is what I really think about cancer and all of this no particular order.  You may have read some of this is good to repeat from time to time :)..please read the whole list. :)

1.  Cancer really does suck.  I was a great person before I got this crappy disease.  I was already enlightened.   I knew what a rose smelled like. I did not need you to say to me, " must be such a different person now" ...I am not.   I always WAS this person.  You just did not know it :).  I have always been grateful.  Cancer did NOT teach me grateful.

2.  Cancer scared the crap out me, my family and my friends.  Screw you cancer.  You made us cry, actually weep...and you are no welcome teacher of anything to anyone at anytime.  You just cause havoc in the lives of people I love.  Fuck you cancer.

3.  You cancer are becoming way too smart for me however I am on to you and I will not let you ruin the time that I have left on this earth.  You will not ruin my years here.  I understand the game way too well at this point.

4.  Silly things that so many people say to me ...please keep saying them.  They make me laugh...whether they are true...not true...said with the best intention or not.

5.  You ....who have had cancer just may be enlightened.  I hope so because God forbid it comes back again and again and will need to gather every bit of strength to fight and enjoy your life in the midst of it all every single day.  And I do....every single day even in the midst of all this bullshit...because I love being alive. 

6.  To all my friends in this fight like me ...some winning....some loosing....many lost..Thank You for inspiring me every single day.  Without you around me...surrounding me...with love and support and understanding in a way that only we understand...I might be at a loss.   I know you look to me for that same support and I am there for you.

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo!! :) 

Tuesday, May 27, 2014

Cancer Survivorship...Update Amy

Well I had a lumpectomy of my breast faster than my dog would have a bath....and if every surgery was like this in cancer thrivorship would be a piece of cake...

Now is that lump leiomyosarcoma, breast cancer, or nothing.  We shall see in about a week.  It was not there on the last scan.  If it is something I am hoping for sarcoma...breast cancer would just complicate everything.  This is all so funny to type...hoping that you have one cancer instead of another. OY!

This is about my 17th surgery???  Everyone knows me there now and it is also funny every time I show up yet again...everyone from the admitting person to the recovery nurses...I suppose this is a good thing...I am still here.  My medical file is like some freakish science fiction novel.  My body tattoos ....are the road map of cancer.  Connect them and you see the medical story of my life....a life of hope and a refusal to let cancer win.   I just won one more a huge surgery and a hit of radiation to go.

Huge surgery is a couple of weeks or so. Oh ...well is it the end of July yet?  More tomorrow.  All is good today.


Monday, May 26, 2014

Cancer Survivorship...Sarcomas Know No Borders

This is the saying of Team Sarcoma however I love it and it is so true.  Rare Cancers...all of cancer does not care if you are black,white, yellow, brown, purple or blue.

Cancer does not care if you are Jewish, Christian, Muslim, Hindu, whatever or nothing!

Cancer does not care if you are rich, or poor.

We have a very long way to go in curing cancer.   Let us be honest about it.  When you donate your cash to fight cancer ask where the billions of dollars are going...ask...get a paper that states it.

I have a feeling much money is being wasted in curing this disease.  And many people are running out of time.

As I head into the first of 2 surgeries...and radiation down the road....please hurry and find a cure for this F'in disease.  My body is getting tired.....although I just walked 1 mile in 80 degree heat...not sure what I was thinking....I was making believe that I was healthy...I am except for cancer.  I hate cancer.

Friday, May 23, 2014

Cancer Survivorship Cancer is Crazy and So Am I

I just changed my entire surgery schedule around.  I am having surgery Tuesday ...the lumpectomy...and the abdominal surgery the following week.  And part of me must be insane.  I need to know what is in my it sarcoma, breast cancer or nothing.  I doubt it is nothing.

And yet I feel a bit of funny...relieved to have a lumpectomy...a piece of cake easy surgery..and yet a surgery....I must think that I have a couple of loose screws ...but I know that I do not.  My frame of reference has just changed compared to the normalcy of other people's lives.

Medical stuff has become a normal part of my life??   NO...however I just want to stay on earth awhile longer and if it involves some medical stuff...I will keep doing it until my body tells me no more.  I am not there yet.

I am not so strong...I am not such a rock...I am just someone that wants to be alive....and when I do not want to anymore I will everyone else.

I really do not care to be called strong anymore...I would trade it all to have some peace and get some semblance of my life back...that means no hospitals for a couple of years at least...having fun, working,
etc.  I can not figure out where I really fit anymore.  I am standing outside of myself looking in and not believing what is going is just hard to believe...but not.

I am not depressed or sad or really anything.  I am just a person looking for a bit of health and a little so many others that I know.   We all are a little crazy my cancer friends and me.

Sarcoma/Cancer knows no borders...colors, races, or poor...long term cancer is just a nightmare....but you have to make peace with it...if you do not you will be crazy.

My running saying is that I can live with you if you can live with me....kill me and we both die!

Thursday, May 22, 2014

Cancer Survivorship...How to Become Ready To Fight

Quite frankly I have been a little crazy all week.  This is a big deal...a huge surgery...another little surgery...and then radiation to my rib.

When I say crazy it is not crying is just numb with a few tears every so often...and a bit of disconnect from the world...really from my own life...that I love.  I felt like a separate person staring into my own life from somewhere else.

You might be surprised to know that even with all of this medical stuff and all that comes with that I love my own life.  I am not rich in money however I have traveled the world.  I am rich in friends..the love of my children and yes my dog...I love that dog :).

All I need is a little time and health and it will come together...this I know.  And if I do not get the time I would not change a thing.  Those that know me may say ....I do not believe you...and you would be wrong.

I have been blessed with strength of mind, soul, and heart.

So in order to ready myself for the next battle I had to reclaim my life however it is...even in all of this.  I had to decide to release control over everything and just go through it,  like I have done so many times before in 13 years. ...and accept it.

So ...I am in it it to go through it and hope for the very best.  I am present.  It took me awhile this time.  How long does it take you?   xoxoxoxo

Tuesday, May 20, 2014

Cancer Survivorhsip...When Cancer Rains..It Pours

My goal in being so public about cancer is to help others...I hope I am helping You.  Even a cancer veteran like myself keeps learning new things a second everything changes a lot of the time.

You all know that I am having an abdominal surgery next week. A big one...I also had a pet scan a few weeks ago.  I now have a small tumor in by left breast and a dot on my rib.  There will be more surgery on my breast as well as radiation to my rib.

Thank God I had the pet scan...thank God...never would have found those two little dots until they were big.  The gifts and warnings to be even more aggressive in diagnosis keep coming.  I had the pet scan at the wonderful suggestion of my surgeon....had not had one in years...he saved me ...yet again.  I feel like after 13 years of cancer...I should have known to ask for this myself.  I thought the MRI's were enough...and the CT of the chest..they were not.

However now I am faced with months and months of treatment.... about half a year...and after doing this for 13 years I must rearrange my train of thought in learning even more to develop extraordinary coping skills that sometimes lately are hard to find.  I know that they are there.  I will find them.  I have had them before.

I just feel like it is pouring.   I thought maybe it would be a big down pour and then the sun would come out....may be a bit cloudy for awhile...

I am not not crying...I am the the song...I will have to "Let It Go!"   :) Cancer sucks.  There are no parts left in my body where someone has not!!!!!!OY

Thursday, May 15, 2014

Cancer Survivorship...Talking To Your Kids About Cancer

My kids are in their mid 20's now...Thank God.   Other parents with cancer are not so lucky.  My kids were 11 years young when I was first diagnosed.  And throughout all of these years they were the primary people on my mind.  Their Dad passed when they were just shy of 17.  I needed to be here.

Of course talking to kids about cancer needs to be age appropriate. My kids now in the 20's I treat them like adults and do not hide fact I laughed last night as one of my daughter's said that she was "disturbed" due to the writing in this blog.  She is now old enough to be a reader :).  I will not change or sugar coat a thing..

However I leave my kids whenever that time comes...a million years from now with the following words...

I love you forever.
I am sorry I got was not planned and I wish I could change the last few years of our lives together.
I am trying really hard to stay here as long as possible.
I actually never thought that I would have children.  I did not plan you :).  Thank You for coming along.  I would have missed you had you not come to be with me.  I love you more than my own life. 
When I have tears they are not for me.  They are for you and the part of your life that I might miss.

With or without me you can have a great life....just plan a little...have no fear and think out of the box.  Do not follow the crowd.  Fall in love with your work...find a passion.  Failure is is nothing more than learning by mistake.  Learning by mistake can be fun if you do not take it too seriously.  Do not take Life too seriously.  It will always change and consist of hills and valleys.   Even the valleys can be green and rich. 

I am not done here...not now...not yet.  

Cancer Survivorship...Measuring Life

Last night I was at a wonderful birthday party.  I am having another major surgery the end of the month.  My brain is definitely working a bit differently lately as to deciding where I might spend my last days of decent functioning for awhile.

My mind wanders easily as I sat with some wonderful people and thought...Life is so basic with lovely with people that find joy in things that make you happy....and I so do not want to be sick anymore or die way too young...I love being alive and doing new things...meeting new people...I have so much joy in life and I do not want to leave yet...

This morning I am thinking of all of the fun and work that I have to do before the end of the month and I know now that I still have so much fight left in me regarding this disease called cancer.

I think a lot of how Life is measured in fighting illness.  How long can a person fight mentally, and physically before you just have to stop.  I am so not not done fighting.  I am a bit tired...the rest of this week I am done being afraid.  I have plans and this F'in disease is not going to stand in my way....not this time....not this time.

I often think that I will know when to stop fighting...that there will be some sign from God...or my body...will tell me...or maybe there will be moment.

So how do you measure your really do not do it in the ways that you is not the big stuff...I think that it is measured small moments with lovely people doing what you enjoy...taking a breath and deciding that you are not done.  I am not done cancer ....You will not win this time.

Tuesday, May 13, 2014

Cancer Survivorship....The Zone

I am supposed to be analyzing acknowledgement however now I find myself hurrying to be in the zone...the zone of being in a good state of mind while I stop eating...go on a liquid diet and give myself so many enemas to make sure that my colon is properly cleaned out and my digestive system is ready for this huge surgery...

I am always in amazement of women that would actually do a digestive cleanse for health is an assault on your body,,,there is NOTHING healthy about forcing yourself to go to the professional help!  Nuts :)

I will miss eating food...for a couple of weeks or more.  I will get way too skinny and stupid people will tell me that I look beautiful (and mean it because they really want to be that thin!)...after all I live in Southern California :).

I will see my all of my old nurses and nurse assistants...hoping for a great foot rub while I am in the hospital. I also will ask to go on the employee deck so that I may watch the sun set over the Hollywood Hills.  Maybe I will be in a horror film :)...I will have enough tubes :) and I am totally rebuilt on the inside.

I am happy that I am from New York and that my Dad had a sarcastic sense of humor...thanks Dad.  I am going to come out this is some kind of shape...what kind I do not know.  xoxoxo  I am almost ready..seriously. :)   

Thursday, May 8, 2014

Cancer Survivorship......Acknowlegement...Taking Stock of Your Illness

This post is for after you go a bit crazy...come back and start thinking.  Get your lap top...pen and paper...whatever and here we go...

I am on my millionth abdominal surgery.....:)   I have to joke just seems that way...

Why...I do not care about why this happened to me...I do not know why this happened to me.  Unless it is something that I can FIX or CHANGE so that this disease will never come back again...I release the "why".  I have tried everything over these almost 13 years...everything.  My "why" does not exist anymore. Period.

This does not meant that I will not take care of myself to the best of my ability.  It just means I am releasing the guilt of living....of dying...of everything.  I will never know the WHY of many things.  I am letting it all go.

Not thinking of why and all it signifies enables me to plan for a better tomorrow.

Read the post below...they are connected.  Cancer is not your fault!

Cancer Survivorship...Acknowledgement

The key to success in anything surgery.. .in business is acknowledgement.  If you can recognize what is real and how to plan for upcoming events that you may be in control of or not...much of it may be just fine.   The next few posts will concentrate on acknowledgement...

If.....If is a big one :)...Yes..IF

Wednesday, May 7, 2014

Cancer Survivorship ...Dreams

Yesterday I talked about my nightmares.   Now let's talk about some dreams. If  I did not have some dreams, I could not stay here any longer. The dreams keep me they better be good :)

I dream about an adventure. I dream about getting on a plane with no real return date.  I see myself traveling all over the US and coming to see you.  I am traveling with one little suitcase and journal to write in.

I dream about my daughters and seeing peace in their minds and hearts.   The rest is up to them.

I dream about cancer really being cured because in today's times because in the future people will keep doing crazy things to themselves to stay alive and will miss "living".   I am hoping for me I will know when that time comes .   I am not there yet.

Hurry up researchers .....too many of the people that I have helped are gone and those still here want to stay.  We want to stay.  That is the real dream.

Tuesday, May 6, 2014

Cancer Survivorship ...Post Traumatic Stress Disorder

Long term cancer patients have nightmares.  They are not the same as soldiers in battle however still horrifying.   I have had at least 15 major surgeries to date.  When I am fine and just doing life I do not think about these things so much ....however here now is what pops in and out of my head as surgery nears....
1.  How I will wake up .   This is a big deal.  I remember feeling my body each and every time to see which parts are still there.
2.  I remember when the epidural did not work and I was in so much pain that I thought it better to be dead.  Then it did work only it was not placed properly and the pain went from my body to my head and I cried for a long time.
3. And there are tubes everywhere that I had a hole in my body and there were man made holes as well.  And I mean everywhere.
And so much more....if all of the "what ifs" go right takes about a week...then the sun comes out... a little.....

And I get to take a shower and feel the hot water cascade down my the hospital.  That shower becomes a gift from God.  And during that week one by one the tubes come out..including the nose tube....

And there is waiting....waiting for your body to work....can I drink the water...will that little piece of toast go all the way down...will I ever use the restroom again in a semi normal fashion.  Thank heaven I got to brush my teeth!!!

And will this be the last surgery I ever have to have...and if it is the last it because I am living or am I dying with each and every invasion not only of my body, but of my spirit and my soul.

I am so strong. Strong people get tired too :) Why would I write this?  Because there are those that will not and it needs to be acknowledged.

Cancer Survivorship...Hotel Amy

I am going back to surgery the end of May.  My last abdominal surgery was last April  My last lung surgery was last October.  This will be about my 13th or 14th ab surgery.  It might be my 17th surgery overall in almost 13 years.  I have really lost track.  What I have not lost track of, are the effects of this disease long term.   I will discuss that a lot in the coming days.

My surgeon is a walking miracle however it does not mean that he will ever really cure me and I find that petrifying.   Cancer is an unwanted guest in my body.  We kick it out of its' present room...throw away the key and it just finds a new room to occupy for a time.  The problem is that this is a crowded hotel and I am running out of space.  It has to just stay where it is...not grow...and not accept guests in any other room. I have tried everything holistic and I will keep going and keep writing.  More later :)


Thursday, May 1, 2014

Cancer Surivioship 101...35,000 Views.. Waiting/Doing

Today I hit 35,000 views...yeah.  Today's blog post is dedicated to a friend in the fight that talks about waiting....waiting to live...waiting to die ....she stated,  as a cancer patient fighting active disease that we are always waiting for something...even in action....even in motion....even trying to move life forward ...even when we think that life has stopped...and then it starts again.. we are waiting for something good, bad, or in between.  We seem to be always waiting.

I have been thinking about this for awhile now and I would propose that even healthy people in the throws of life... that we are all waiting for something to happen all of the time.  I believe as we set goals and move forward...or doing nothing that we are waiting for the fruits of our labor to come upon us or waiting for the next surprise without planning, waiting to meet someone...waiting for this or that ...good or bad.  What are you waiting for??????   What??????  Who????

I guess the trick while waiting to keep my friend does.  She is waiting however also doing.  Do not stop doing.  When you stop doing is when the waiting is painful are going to wait anyway ...Stop doing nothing while waiting!

We are waiting even when we are actually doing.  Waiting is life.  When we are done waiting ..we have passed on to the next place....and I wonder if we wait there as well?  Or have we finally arrived? 

Later today new post on Rare Cancer Survivorship101    on new technical blog ...I am not waiting!...maybe just a little :)