Wednesday, March 31, 2010

Illegal Post

I do not support or endorse the last comment on my blog if you read it.  Very sorry that people have their own agendas and are starting to post crazy things.  People...cut it out! No crazy cures for cancer or diet pills

My apologies.
Amy

Sunday, March 28, 2010

More on Have and Have Nots..Who Is..Who Isn't

I never felt like "have not" ..ever.  I worked my way through college, backpacked through Europe like everyone did in the mid 70's..I was always very independent.  I supported myself always and I was generally a very happy person.

I worked..got married and had kids.  I had a house ...I worked at a career that I enjoy to this day. I worked..my ex husband passed away and I got cancer for three years straight.  I am simplifying everything because I do not like to write long blogs...:)..However one day I was healthy and the next day I did not really ..could not really work for almost 3 years....once in awhile I would come up for air...for a month or so and see a few clients but for the most part I was not able to do much.  It was either surgery, chemo, or radiation....for 3 years...UGH!

Does that make me all of a sudden a "have not"?  It shouldn't...it doesn't..but it is difficult to fight the feeling.
I watched my life as I knew it melt away before my eyes.  Not only was I fighting cancer ...I was struggling to balance my own budget as the medical bills started rising with no income in sight due to on going illness.

With all of this going on I am still a very lucky person because I am here and I am healthy for the moment and may be even for years.  My house is long gone and the lifestyle I knew..gone with it.  So now I am starting fresh.  My girls are in college.  I still do not think I am a "have not" even though I do no have what I used to.  But I would have had a much easier and less painful time if my medical insurance and hospital bills did not drive me out of the home I loved that I lived in for 10 years.  There is something wrong with that.

The life I hope to re build will not be anything like the one I had.  This is the fun part.  I get to re build..so I have never really felt like a "have not"....I have felt like..."What the hell happened"!!!!!... and perhaps a bit of post traumatic stress...but a have not?  I do no think so.  I maybe have more than most :)

Who Has it and Who Doesn't?

We always read about and people talk about "The Haves and the Have Nots".  Who are these people and what constitutes a have and have not type of person?   The young gentleman that was born here in the United States, worked most of his adult life, lost his job ...had no medical insurance...and discovered a sarcoma in his chest during this time ... will most likely die because he cannot get the treatment he needs...is that OK?  I think not.

There are thousands of stories just like this one covering all kinds of illnesses.  There are stories of folks who have insurance and still loose almost everything due to long term illness and the structure of our medical insurance industry.

Why was it OK for banks to give people bad loans and ruin the financial structure of our country..but it is not ok to give our citizens decent medical insurance?  I think they call that greed?  Our medical insurance companies are greedy as well.  We do need to change.. even if you do not like the system that was just voted upon. 

So what is a have and a have not type of person?  I do not think it is just about having money or not.  More on this next blog.

Dedicated to Charley

This blog is dedicated to Charley Haley.  She is slipping away from us and I will miss her.  She fought so hard to live.  I have no idea why one person lives and the other does not.  I choose not to think about that anymore after 8 and a half years of battling this crazy disease that leaves me cancer free at this time.   There are no words that are appropriate to say when a loved one dies so young and having fought so hard....the young family they leave behind.

My daughter asked me why I have so many friends that have passed away from cancer..  I answered...if you choose to help yourself and to be supportive of others in a similar situation, some of us will stay here and some of us will die.  To those of my friends that have passed away and those that are still here...the support I have received for sure outweighs the support I have given.  It has been an honor to know you all although I wish I had met you in some other way!!  And the care givers as well.

Charley...may God grant you the peace you are looking for.  No more pain and suffering.  And to her family ..I am so very sorry.

Love,
Amy

Tuesday, March 23, 2010

It's Spring!!!

Hi Everyone,

I have been very busy getting my life in order.  I am ripping the cob webs off and peeling away the layers of struggling with cancer the last three years.  I do not feel the way I used to however I am getting close :).

I am doing all of my paperwork..which is a miracle..battling insurance companies..and taking many deep breaths and praying that I am not just cleaning everything up to start all over in the month of July when I get scanned again.  I pray for time...and more time...and more time...

One of my daughters said to me that she can not wait until her 21st birthday in December...all I could think about at that moment was hoping I did not have cancer in December...one cob web at a time :)

Back to work....and getting gray out of my hair that I have too!

Saturday, March 20, 2010

Organizational Stuff..paperwork, etc

I am back to this and accountability for your day.  What seems like nothing to healthy people is huge to a cancer patient going through so much at the same time.  This advice may seem like common sense however to someone struggling with just being able to take a shower or be depressed...this is a lot.

Go buy lots of folders to put papers in and you will be labeling these folders as you go through your papers...but lots :).  If you can also purchase a portable or moving file folder stand...the work of the day can "follow" you  :) all over your house.  I say this because if you waited this long to do your paperwork...it is all over your house...Buy or get boxes...some will be used for storage...some for putting papers to be shredded, and maybe even some you will need to keep with you..made handy.

Try not walk away when looking at yor paperwork...if this seems daunting ..do not be embarrassed..get a friend to help you.  My work paperwork is something I enjoy doing because it makes me feel healthy and I love my work.  However my personal paperwork the last few years has been an issue.  Often I have called a friend to to come over and we do it together.  And it is done.  When it is done you will feel fabulous..I promise.  It is almost the end of the tax season...get at least your taxes done!

How do you want to organize your folders?  At one point I had them all over the floor. Has it been years?  Make a place for each year.  I started by separating the medical stuff from everything else...medical...personal business, tax forms..other   Then I just started filing in alphabetical order...multiple medical bills got shredded...that was fun :)...think about buying a shredding machine for your home.  It's not too expensive and it feels great! 

As far as the medical stuff ...see if you can match the bill with the paperwork from the insurance company.  Then you will know how much they paid (or did not pay)  and even know what codes they used in case you need to appeal.

Regarding my own accountability..yesterday I had a full day of work for the first time in 2/3 years.  It felt great although at the end of the day...I was tired!!  Good tired though...today is paperwork day for as well for work...and fun later.

I lay down at night and say a little prayer that this will continue way past July...the time of my next scans.

Friday, March 19, 2010

AHHHHHH......anticipation

You know for so long your body is poked, picked, opened up, closed up, sore, scanned, filled with contrast and chemo.  Then one day maybe you are free and you have some time to reconnect with your body in a positive way....so tomorrow I am going for a manicure/pedicure massage..and just the thought of someone touching your body having nothing to do with anything medical....I can feel relaxed this evening....hours before I get there tomorrow.  I am practically dreaming about it!!!  Someone will walk into the room without a needle in their hand!!   Imagine that!!

I do still have the port in my chest....however I never feel it and it has been there for years now.

Thursday, March 18, 2010

Struggles and getting started

I help facilitate a support group of a mixed group of cancer patients.  Some are quite ill...some going through chemo however OK...some like me..cancer free for the moment..All have been struggling with cancer for years.

The under lying things that we all have in common seem to be..

It made us all struggle financially...big time.

It has ruined or strengthened relatonships with significant others...mostly ruined...

We all do not want to do much of anything that we did before cancer.

We all wonder if we will ever get to live many years and have the opportunity to re build our lives....truly

We are fed up of with people saying things to us for example, "What does not kill you makes you stronger"...we were already strong before this.  We did not need cancer to teach us..:)

We hate the words..."Be positive".....People who say this have never been really ill and have no idea what else to say. 

There are some days when laughter is everywhere in the room and some days people are just so sad and crazy.  It is all part of the game.  It is allowed.

In my own situation I can feel a little bit of "post traumatic stress"..I am really great for the first time in three years and yet I must now pick up all of the pieces of the last three years...and I do not have much time to do it!!!!!  3/4 months until my next scans.  So this blog becomes part of my "to do" list and accountability partner.  You all are my accountability partners.  So let's go...I am going to tell you what I am doing everyday to rebuild my life in the next 120 days.  If you have something to say and/or contribute..please say it. 

Every morning I wake up ...and instead of thinking..oh God I have so much to do..I am going to have a daily plan...weekly...and monthly plan....I have to follow it...It's the only way.

Today is planning day, paperwork and phone calling..my favorite....I love the phone calling, hate the paperwork..lots of insurance paperwork...back later.  What are you doing today?

Sunday, March 14, 2010

How We Make Friends

We go through life and we meet people obviously through where ever our lives are at the moment.  Your friends that you grew up with...from work...college..community involvement etc.  Well.. alot of my "new" friends have come from my experience with cancer for the last 8 years.  Many of them are no longer here.
However I can still see them and hear their voices.  They give me inspiration to keep fighting.  They have taught me more about dignity and grace than I can articulate here.

Being cancer free for the first time in 2/3 years, is a relief to me not only to myself...it is a relief to not have to see my family and friends be sad and worry...especially my kids.

If you are going to help people and have lots of friends with cancer you also realize that you might be attending a lot of funerals.  Your heart may break often.  You will wonder constantly if you are next.  You might see yourself in another patient that is just one surgery or chemo ahead of you.

The rewards of these relationships are huge.  What you learn here about yourself, you will not learn anywhere else.  You will learn how strong you really are.  You will learn how much you can really give.  You will learn how worth it life really is.

God Bless my friends who are gone and those that are struggling.  I think of you everyday.  I miss our talks and all the fun we had as well.

Tea Party/Coffee Party..Idiot Party

I had to talk about this as I think the media and the political parties are acting like idiots.  I heard on the news that one Congressman tried to attach something about student loans to the healthcare bill and it goes on and on and on.

Health Insurance should not be employer based.  That is one way that poeple loose their insurance.  They loose their jobs....go on Cobra....the premiums skyrocket..they cannot pay or they just loose it as time runs out and they can not find a new job fast enough.

I am tired of ridiculous semantics of the media.  I am tired of Congress being greedy and making it all about themselves.  I am tired of the very successful insurance company lobby that seeks to make sure that the American people pay big time for their insurance benefits.

I am even tired of President Obama who I really like however I do not agree with his plan either.  I think a bunch of brilliant cancer patients should get together and make a plan....certainly we can do better than what we have seen so far.  !!!!!!!!!

Rare Cancers

Rare Cancers suck...oh...I mean stink..no they really suck.  I am sorry for all folks who expereince cancer however the rare ones that no one talks about...that there are few doctors for...that when you say what you have they do not even know what it means, or how it is treated.....it sucks.

It's horrifying when your doctor says to you, "I do not know what to do for you anymore, we have run out of treatment options."...we can try this or that and see how it goes.

So the key when you have a rare cancer is to do your best to stay alive until something new comes along.  In 2001 there was barely anything for retroperitoneal sarcomas....surgery is still the best option and there were a few available chemos.  Now there are many more chemos and anti-angiogenesis drugs as well.  Will they work on everyone?  No ...however they will some and quite well.

So that is what I am trying to do here since 2001...keep staying alive so they the scientists can come up with new stuff so I can stay here for a longer period of time...and not go crazy in the process...or have my body completely fall apart from continuous treatment.  So far it is OK.

Saturday, March 13, 2010

I am Very Angry Today..or am I?

Hi Everyone,

I woke up this morning and that is great.  I looked around and started to write down my 3/4 month plan.  I found myself extremely angry.  I am also a little nervous.  I have such high expectations of myself.  Do you feel that way about yourself?  I see this in many people who e mail me privately.  You have been fighting cancer for so long....for so many years....it becomes one of your jobs...literally.

You become your own researcher for your illness.  You have to fight the insurance companies on just about everything.  You have to arrange your care.  You have to go through your illness as well and just you going through constant surgeries, chemo and/or radiation is huge!!!!!!!  It becomes your life. 

And then one day you wake up and your are at least free from medical procedures for awhile however you still have to deal with mounds of paperwork, and get your entire life back to somewhat of an order.  And you have to think...is this enough time to get EVERYTHING done before my next scans...just in case I get diagnosed again? 

It's a beautiful day today in Southern California.  I am going to the beach to jump up and down with joy....then I am coming home to start putting a realistic plan together for myself...LOL.

Friday, March 12, 2010

Picking Up the Pieces

I am so ADD.  I promise to get back to being single and having cancer however I had the best news today.  My scans were perfect.  There was no disease evident anywhere.  This is huge.  I have been fighting non stop for 2 years.  I have been all together fighting for 8 years however consistantly the last 2 ( maybe 3 but who is counting!)

I get checked again in 3/4 months.  However fighting cancer is never about just fighting cancer.  In the midst of all of this my kids Dad passed away, my Mom passed away, my dog even died...and between the surgeries (3 major abdominal), pelvic radiation, and chemo, this has all been quite financially and emotionally challenging.

So as I sat in the docs office today getting this wonderful news, I barely reacted..except to have a huge sigh of relief.  I think my wonderful doc expected me to scream, yell, or perhaps jump up and down with joy.  Make no mistake...I am thrilled ....and now I have so much work to do. 

If I could financially do it, I would throw a backpack on my back and fly away.  I would visit friends all over the States and do nothing for a month ..nothing...absolutely nothing.  But that is only a dream and now it is a window of opportunity for 3/4 months to pick up the pieces of my life as best that I can and move forward..whatever that is.  I will go back to work full time and go back out into the world that I used to know.  And hopefully I get to stay there for awhile...a few years at least :). 

And hopefully I get to make my world a bit different...try new things, meet new people and get that travel in there.  These 3/4 months are a gift as I thought I might be dying this time around.  And here I am fit as a fiddle for now.  Thank God.

Monday, March 8, 2010

Negatvie Chutzpah

I will go back to single living with cancer in a moment.  Some of you have e mailed me to ask me what negative chutzpah is......here are a few examples.

1.  The person at the coffee shop the other day that ate an entire meal...then told the cashier that she had no money and just walked out.  She was dressed beautifully and drove a great car.  That is chutzpah.

2.  You are waiting on line and someone just walks in front you and goes first...that is negative chutzpah.

3.  The celebrity that goes to a charity golf tournement...plays golf for free...and does not donate to the charity.   That is really negative chutzpah and you were quite rude and stuck up as well.  I do not care how many gold medals you have won.  How could you do that?

These are examples of negative chutzpah.

Sunday, March 7, 2010

Solitaire

This is a big subject.  Papers are not heavy in weight however they weigh very heavily in your mind....because you are not doing your paperwork....yes..you...yes me...yes everyone. If you do not do it right away it will pile up.  The bigger the piles are, the more you do not want to do it.  Get up off your chair or out of your bed and do it.  If you can not do it, find someone to help. Find someone to help!  You can not sit there and stare at it for days, weeks, or months....or years...

Is this you?  Insurance paperwork is indeed a nightmare.  Your medical records are a nightmare....The insurance paid on this.. but not this...why and why did they pay so little.  Who is this doctor and why do I have a bill from him?  What is today's date?  Which procedure is this bill from.  Is this you?

I have not cleaned my house in a month....I am going though chemo and I just do not have the energy.  I wish I had some ice cream in the fridge...I could use a friend right now just to get a few things. 

I need to make a few phone calls but I am not even sure I can get the words out.  A cup of hot chocolate sounds so good right now....with whip cream.

I should not take a shower with no one here...I have been a little dizzy.. however it just feels so good.  I hope I do not fall.  I would love to cook a nice dinner for myself however if I can get through the cooking, I still need to clean up. 

I am so tired ...but I wish I had someone to talk to or play a game of cards.  Many people go through serious illness all by themsleves.  How can you help?  More on this in the next blog.

Chutzpah

Can you pronounce this word?  This is a yiddish word meaning absolute, over the top nerve.  It is actually making its way into everyday language (depending on where you are from) :).  Chutzpah used to be a negative.  I find it to be a positive if done in a non confrontive, calm manner.  We all need chutzpah in today's society.

My Mom passed away a year ago this week.  I miss her.  My Dad is gone as well. He is gone almost 7 years.  I miss him too.  I learned 2 different types of chutzpah from them.  I would like to pass these types of chutzpah along to you.  I have found them invaluable in dealing with my medical situations and life in general.

My Dad taught me the art of talking to everyone...everywhere. It was not obnoxious talk...it was making friends kind of talk.  And it was never about him...it was always about who he was talking to.  He also taught me that if you want something, you really have to "ask" for it and not just once.  Maybe you keep asking at least 4 or 5 times and then if it is "no", it is no.  He had great chutzpah as he had the same friends most of his life and knew how to ask anyone for anything at anytime.  I also miss his crazy sense of humor. 

My Mom always said,"You get more with honey, than with vinegar".  In other words...if you want something ...ask with respect, dignity, and be specific..and calm.  My Mom did not have the out right chutzpah that my Dad did ..however she had her ways. :)  I learned a lot by watching the two of them over the years.....so why am I telling you this?

My readers who are patients....you need Chutzpah when you are going through cancer or any serious illness...you need to "ask" for the things that will  make your life easier.  Here are a couple of examples.

1.  In 2001 I needed to have a chest tube removed.  My lung had collasped during a port insertion for chemo.  Now all was healed and it was time to remove the tube.  I was a new patient back then and petrified to have this tube removed while I was awake.  I told the technician that I refuse to be awake for this procedure.  He stated that they could knock me out, but they do not have the time.  I said very calmly, "Go get my doctor.  I refuse to be awake for this procedure."  He then said he did not have the time for this.  I nicely said I do not have the time for him and if he did not call my doctor that this would become an issue for all of us.  He called my doctor and all was well in the world.  A little chutzpah goes a long way.

2.  We as patients get needles all the time.  It is a miracle and a relief when someone knows how to stick a needle in your arm.  If you have never had a pic line inserted into your arm that person who does it flawlessly, is an angel.  It is down right scarey.  Over the years I have learned who can find a vein easily and who can not.  When I go to do procedures involving needles I actually ask and make sure the person is there that day knows me and knows where my veins are.

I believe as a patient within reason you have the right to be as comfortable as possible in whatever situation you are in.  You are having a huge surgery...you are doing chemo therapy and/or radiation.  The little things you have to go through are the things that make or break your day....and they may not be so little.

I have talked about "The ask" before I think (ah...that chemo brain :) ).....but not in conncection with chutzpah.  Chutzpah done properly is an art form and can only help you in dealing with illness.

Saturday, March 6, 2010

Bent but Not Broken/Planning

I will be scanned mid March for a "baseline" to start with.  This is the post surgery scan to first see if anything has grown back that quickly and if everything is fine we will have good pictures to measure, if there is any future disease.  :)  I am not worried about this scan....it is just too soon for something to pop up.  I will be worried about the following scan in July and then October....every three-ish  months.   That is how the time in my life is measured...in 3 month-ish intervals.  I never plan more than 6 months in advance for anything....ever.

Now is the time ....the very strange time that I am healing and trying to figure out in the short term what are the most important things that I should be doing.  Obviously I will go back to work.  That is always interesting to me because I am my own business.  I have opened and closed my business a number of times in the last year due to illness.  Each time I sort of get up and running again I disappear into the world of cancer. I have a partner now because I can not work alone anymore in the interest of my clients.  I will never have to slow down business wise anymore.

There are those moments in the healing of my mental state that it would be so easy to do nothing.  It is easier being unsuccessful than it is being very successful.  Many people who have never had a long term illness do not realize this.  You have just recovered from multiple surgeries and chemos and now you have to go back to work?!?!  No down time to charge the engines?  No down time to take a breath and think about the last medical years of your life and everything that has transpired in the process?  That is why I type this blog.  It clears my mind and I move on.  I love my work as well because I live it.

Many people think that I am already a hero.  I have been battling this cancer since 2001....consistently since 2006.  I do not feel like a hero and I get embarrassed when people say that to me.  I am no hero.  I had no choice but to fight.  I have kids I would like to stay here with....a boyfriend...too.  I have lost much in the way of material things.  I would give it all up again knowing I had years of good health left to enjoy here on earth.

I want the success back again that I was enjoying with my business...I want to go out dancing with my boyfriend in a great dress and high healed shoes.  I want to see a lightness of spirit in my daughter's faces because they are thinking that everything is ok.  I want to see those huge smiles that I remember.  I want to have one huge happy cry that the success of the moment is that I am still here and cursing cancer every step of the way.  Maybe after my scans on Friday...I will do that.

I keep saying 2010 is my year...not to be some crazy hero going through cancer yet again...but no hero and I get to just be me.....normal, nutty, everyday me.