Tuesday, December 14, 2010

Focus/More Mental Maintenance

I know they have proven chemo brain and the effects of multiple doses of anethesia..:)..couple all of that with the stress of on going cancer and you get one crazy brain!!!  It is not enought that we are all a little bit nuts anyway..

I am having great focusing issues this time of year because I remember so many people that I have lost in recent years.  My Mom, my Dad, the Father of my children, even our dog....and the countless folks I have met while battling cancer.

Memories of wonderful times we had flood my brain and I get very sad.  I long for new happier times so that when I remember times gone by, I can smile and not feel so lost in this crazy disease.

So for the rest of this year I will try and focus on what is good TODAY and hope that next year at this time that life is just a little bit easier as far as medical stuff goes...the rest I can handle :)

Sunday, December 12, 2010

Be With Me

Please be with me today...in the present.  Let's not think about what might happen.  Let's not talk too much about the past. Let's just be here today.  Today even though I have cancer..I am healthy..I am still me.  I am still doing everything that I normally do in a day...so please think of me in that way.  To think of me as any other person right now would be a crime because we would miss the moment.  Can't miss that moment. :)

Do Not Cry For Me

Today I went into my favorite high end supermarket to buy a lot of really fabulous fattening food..it was that kind of a day..then I will walk it off ..LOL... 

I bumped into my regular ob/gyn.  Thanks to her quick action over 9 years ago I discovered my cancer very early.  She is one of the people I consider instrumental in me still being here.  I adore her.

I had not seen her in a couple of years.  Of course she gave me the look...you know the look...the how are you really???..look.  I told her that I just started a new chemo last week.  I could see the sadness in her eyes.

I wanted to make her feel better...I said not to worry...I am still here 9 years later.  She said it would be nice if it just went away...I agree...I so agree.  Then we just caught up on other stuff.

Do not be sad for me.  Do not cry for me...I do that enough on my own.  What you can do for me is live...really live..like I like to do..that I might not get the chance to finish properly...I feel like I am so not finished...and maybe I am not.  I'm not.

And you out there who are healthy...what are you complaining about?  Car is not nice enough?  House not big enough? Shoes not the right color?  You do not like your job...change it...would like a better relationship with someone?  Say something.  Say something ...fix it...if you have your health both physical and mental..you have everything..no excuses for the life you lead if you do not like it.

Saturday, December 11, 2010

Wasting Our Tax Dollars

According to the National Conference of State Legislators, California is the only state that provides out state lawmakers with a fleet of new cars at the taxpayers expense...will someone please explain this to me?  Why do you get a free car, health insurance forever and a huge pension??  For wasting how much of our money?  Please note this is both a Republican and Democrat problem...

Write your state legislators today and let them know that you refuse to pay for this any longer...

You Really Need To Plan

I am very tired today.  Not only did I have a mind bending headache..but I had...had to see clients today and work.  I love my job...I enjoy the people I meet...but I was just thinking how if I had planned better financially, that I would not have had to work today..not feeling well at all.... and going through chemo.

So here is your chance...if it is not too late to plan better financially.  But you won't...this is why it is so important to plan...You plan..God Laughs...You plan...life interupts..

You get cancer or any other serious illness and you have no savings to speak of..you have no life insurance..maybe no means of long term care...you forgot how life can be so simple.  Maybe you had some money saved but it melts away as you spend it on caring for your family...

It is the holiday season..the biggest gift you can give your family is too plan better financially...so when life comes along and gives a big surprise..you are at least prepared financially...It is not the biggest material gift that your kids will really remember...it is how you cared for them and yourself when you all really needed it.

Do your living trust.. especially if you have young children.  Have life insurance...it is sending my kids to college...if you are 49 & up investigate long term care insurance so your family can watch a movie with you instead of wiping up your mess, bathing and dressing you.

You will have the chance to do this..until that split second comes..and your chance will be gone...maybe forever.

My Head/My Body

I know I am suppposed to think of chemo as medicine and do a lot of creative visualization...like think of the tumors just melting away as the drug attacks....or see them blowing up inside my body and totally disappearing,,,I know..

However what I right now is the biggest, most huge, headache that I have ever experienced in my life....someone just please come and remove my head from my shoulders and roll it away to some other state of being!!!!  I hope I do not have this headache for all of the months that I will be doing this.....and I hope this works...I am not sure cancer is going to kill me..just the little things along the way that will test my level of pain tolerance and endurance.

And this is just the beginning of the next few months.  Cancer may kill me someday but I will not let you take anymore life away from me...I think there is a saying...anything you take from me, I will still figure out how to live without it...and live well..until I just can't anymore...bring it on...I am not going anywhere anytime soon.

There are people that do years of chemo..how do they do that?  Am I going to have to do that?  Hope not.  I am all over the place today in my thoughts...maybe it is chemo brain :). 

Thursday, December 9, 2010

First Dose Done

This is my fourth chemo.  I have lost my hair twice.  I am not sure about this time...I do not mind being bald as a physical appearance however being bald is just very cold.  Wigs are very uncomfortable. And what is most bothersome is that when I just wear a hat or just go bald,  it can give away my privacy of illness.  Many people know that I have cancer however it is just nice that when I walk around on a daily basis that people do not need to know what is going on unless I choose to tell them.

It is kind of like being pregnant...complete strangers think that just because you are pregnant, that they can touch your belly and ask you all kinds of crazy questions.  It is the same with cancer.

I finished my first dose yesterday of doxil.  I am doing well.  I have been told that I may suffer from extreme hand/foot dryness..peeling...time to sleep in lotion, socks and gloves.  I will also get a neulasta shot this evening to help keep blood counts up.  For those of you who do not know...a way to avoid the bone pain that may accompany the shot..it to take a claritin the day before and after the shot...check with your doctor first of course before doing this however it has worked for me.  This was a tip from the chemo nurses. :)

I am going to work now...and always hoping for the best for me and you. 

Wednesday, December 8, 2010

Getting Chemo Right Now

Wireless in the chemo area here at Cedars...how nice is that :).  Yeah!  My chest port worked.  It is the little things in life....when the port works...when the person doing the stick into your chest knows what he is doing...when the blood flows out for labs....

This chemo area here is new.  You have your own space...tv...food...drink..if you have to be here, it is put together well.  I do not want to be here and this shit better work.  I have not gotten the doxil yet...labs done...just waiting.  I have been coming here nine years.  I know the nurses...docs...the psychologists...it is nice...they all stopped by to make sure that I was not going crazy...yet.  I put up a good front..but I can not express in words how much I can't stand this..but I am here and will make the best of it!  Where is the ice cream sundae?????  With whip cream and the cherry???  More Later...

Monday, December 6, 2010

Over a Year

I have now been blogging since Sept 2009.  The good news is that I am still here.  The bad news is that I am stuck in the same place....still fighting this disease for at least another year...without a break.  I start chemo this week.  I will take you all with me through the process.  Lets hope for great results so I can have a surgery and get this crap off of my pancreas.  The other tumors are easy to remove.  This one is not.  It has to shrink.

So I will be praying, playing, laughing, working, and screaming in my car throughout this process.  I hope you will join me :)  Getting scheduled this week ....for tomorrow I hope.... as once I make a decision to do something I am the patient with no patience. 

Sunday, December 5, 2010

Story Tellers

I have talked about in the past...having your trust in order, and medical buddies.  However if you are gone who tells your kids the stories about you?  Close family and friends?  Who and where are they?

Who tells the kids about when you were a kid?  When you got married?  When you were at college? When you backpacked through Europe?  Who tells them what it was like with the great grandparents?  When you got your first job?  Your first boy or girlfriend?  Who would you like to give your kids advice?

I am the only parent as my ex passed away almost 4 years ago.  He was a great Dad and my kids feel the pain of his loss everyday..still.  So I decided that my kids need some people around them that know things about me from different times in my life.  And if it comes up..they will tell them about me..if they want to know.

They will also help them with whatever they need as time progesses..they know who they are.  So think about not only the legal and medical stuff should you not be here.  Think about the history of your life and who tell the kids your stories.  They will want to hear these stories always...maybe not at first but eventually. 

Keeping Busy

A therapist might say that you must face your illness head on and deal with everything.  I would say to that really?  Why?  What is the point?  If you have been dealing with all of this long term (me..9 years)..what exactly should I be facing that I have not already? 

If I was not functioning, I could totally understand..however I do everything.  I help facilitate a support group.  I work.  I have fun.  I laugh.  I cry.  And I fully understand the situation that I face. So what is the reason I need to be discussing this and facing what? 

I do not like to talk about cancer all that much.  I do not need to watch a TV show or movie about it, because unless you have lived it, you can not act it...because you have no idea what it is like to feel it for so long.  Look at all of the people who have had it just once?  Many of them have a hard time living with it and not even having it anymore.  I would love to be one of those people....to have it once and never again.  Those are the folks that run around for awhile feeling enlightened until enough time has passed...

So I am comfortable living in denial and making believe that the chemo I will endure for the 4th time is just a little medicine that I need to take for a few months to get rid of these blobs in my body.  Then cancer will melt away and I will never have to deal with this again.

It is only in the early, early morning when my eyes open for that split second that I do not remember that I have cancer and then I do.  It is such a big disappointment when I remember what the hell is going on in my life :)...but I /we must carry on ..maybe I or you will be the next miracle.  I am counting on it.  Until then I will keep busy working, laughing, etc so I do not think or face much...and so should you ..:)

Friday, December 3, 2010

Dedicated to Beth & Bruce

Every once in awhile someone comes along and shows you how to get things done.  Thank you Beth and Bruce for teaching me about love, devotion and fighting this insane disease.  I am honored to know you.  I hope when it is my turn...whenever that is ..that I meet Beth in heaven with everyone else that has gone before me. 

I wish I could hug you for a very long time.  I do not let myself cry very often however tonight I can not help it.  This disease truly sucks!

Thursday, December 2, 2010

Daughters

My daughters will be 21 (yes, I have twins) in two weeks.  This blog is for them.

Girls..I love everything about you.  I could only change your diapers and they never smelled :).  I could stay up all night to care for only you.  I can stare into your eyes forever.  I want to hug you forever.  Even when you really make me angry, I still want your company.  I like you too.

I think somtimes about the events I might miss in your life and I cry.  I am trying to be there and everywhere.  I love when you laugh and smile....I see you in my dreams.  I hear your voices.  I miss you before I even go anywhere.  I want you with me everywhere.

You will go places and see things that will surprise you.  I hope you find love and happiness in the simple things in life.  I hope you find lovely men to love and that they will return all you have to give. Respect yourself and others.  Have a sense of humor!

Always take care of yourself and speak up.  Learn the art of negotiation and figure out what is important to you.  Have a sense of community. 

Always know that I love you..that moving on is important and memories are beautiful even when they are not enough.  They will have to do.  I know that I have taught you the best I can about whatever I know (whatever that is...haha or LOL).  I hope I have helped you.  I am not going anywhere for awhile.   I just wanted you to know that I love you!

Treatment/ Doctors/Random

It seems crazy to make a "To Do" list this morning when all I can think about is cancer and how to stay alive.  I am at the Cancer Center waiting to see Doctors :).  I do not just want to be alive.  I want to "LIVE".  Being alive and living are two very different things.

What really is living?  What is the quality of life that you are looking for?  I am looking for a lot.  Always.  Time is short and I am not sure anymore that I will get it. 

I have said this before.  I love my Docs and I have been treated with honesty and respect throughout these 9 years.  But the "shit is hitting the fan" at the moment and we have some big decisions to make fast.  I hope I make the right one.

Doctors are human.  One of my Docs said to me once,  " I need to know that when I operate on someone that it will improve the quality of their lives and that my surgery will have a positive result".  And that is the debate.  What exactly is a positive result?  How do you know that a miracle might happen and that person may live many more years....maybe not in the same shape as before ..but good enough?  What is good enough?  How long would you want to be here and in what shape?

By picking a certain path, will you actually extend your life or would you pass away at the same time anyway and had no quality of life during that time?  Years ago we just died.  Now we fight.

With all the advances in medicine and surgery there are many new issues to deal with as patients and doctors.  When is it all too much?

Wednesday, December 1, 2010

Medicare Issues

Did you know that if the fraud issue in medicare was fixed...we would have no financial issue concerning this at all...we could even eliminate the donut hole of prescription medication and there would be no reason to pay our fabulous doctors less money and have them choose to leave the medicare program??!!! 

Medicare fraud costs us...the American people over 60 billion dollars per year....that number is so hard to comprehend..it could fund a small country and then some.  How do we fix this?

For those of you who do not like the idea of any type of socialized medicine..what is your suggestion for an alternative?  What would disabled people do and seniors...without medicare?  It just needs to be fixed....Write your representatives in goverment to get going on this problem of fraud.

The answer is not cutting programs and paying doctors less money.  The answer is just fixing what is broken.  What are you folks doing in Washington except fighting with each other and getting nothing done? 

What would our seniors do without medicare?  Should people who can not work anymore have no medical insurance and no drugs necessary for them to live?  Should they go broke and loose their life savings paying for it?

I have an idea....after you are deemed to have no value anymore in our society..we can do the eskimo way that I saw in the movies once...just crawl out on to the ice and die ..this way there is no loss for the group that still has money and can function...what do you think about that?

What are YOU going to do when you are disabled and or old...how will you keep your medical insurance?  I would like to know.

Tuesday, November 30, 2010

When/Where/Ready

When you have had cancer a long time ...and you need to pick a new line of defense..what do you do?  How do you make a plan when there is no right answer?  ...When everything you do is a crapshoot?...When your doctors are not sure what to do with you or even if they should do anything with you?  When nothing and everything feels right or wrong?....When the thought of next year at this time can seem questionable?...When you are still ready to fight...live ...and dream??

I am ready.  I am ready...to keep going ...to fight...the little vacation has been fun....UGH!!  More tomorrow...more explanation on everything.  This is my therapy..whether you read or not..but I am glad you do.  Thank You.

Playing With Fire & Update

I have had a lot of fun since August and a lot of aggravation. Let's talk about life in general first.  I went back to work and really enjoyed that.  It made me feel like a "normal" person again.  It made me pray that if I could just stay healthy enough...long enough, that I might get a life back...a new one...even living with a little cancer forever.  I could deal with that.

My kids are off at college and doing well enough. They worry about me all the time and rightly so.  I miss them and I am so proud of them.  I had dreamed of this time when I was healthy...thinking I would be healthy forever...that for the first time in years ALL my time would be my own.  I had such grandiose plans :)...Most of this time is now spent working and preparing for the next onslaught of chemo, surgery etc.  Its a crazy way to live.  ...But I am alive.

This is how I seem to live lately...a little free time here or there and then fighting the dragon.  I go to a lot of movies which is a great escape.  Except I saw "Love & Other Drugs" the other day.  I had no idea what it was about!!!  It is about two people who fall in love and she has Parkinson's...it also goes into the whole doctor and drug thing...it was a fabulous escape for the 2 hours :).  I made up for it by seeing fun.."Burlesque"

Leimyosarcoma seems to be attacking me lately with a vengence...I made it a year with no surgeries...think I will be having one soon and then doing chemo. I am not sure I will ever be free of this anymore.  I will continue to fight until I can not anymore.  A few years off would be nice.  So far it has been 9 years total..the last 4 years straight. 

So here we go ..back on the merry go round...I am going to fight ..take each day...I know not where I am going...2 steps forward ...1 step back....more details to follow.  I will continue to make plans for the future...as I always have.

I'm Back!

Many people have been asking why I stopped writing...I have to say, I do not know.  I think it is part fear that one day the words will just stop..not because I wanted to stop but because I was dead.  I think a lot about death lately.

I try and block these thoughts out ..but they flow into my brain like an uncontrolable flood. I also think about living quite a bit and what I might miss.  I think about the present as well.  I do still live very much in the present. I love being alive even thought there are so many issues.  My next blog will be an update.  If you have never read this blog before please start from the beginning...that is where all the good stuff is :)

My Best in this crazy fight!  More later today and everyday for the next month.

Sunday, August 22, 2010

Blogger's Block

I have so much on my mind....that I am stuck at the moment.  I am not sure whether to discuss the sad state of our healthcare system, me moving yet again...or the fact that I do not like living alone while I am being treated for cancer.  So today I am going to say nothing until mid week when I have a handle on my emotions.

I am very angry lately at this whole cancer thing.... I imagine my mood will change during the week...NOT!!!

I am thankful for my energy level..which is quite high at the moment....YAY!  I am thankful for my girls doing well in their respective cities and colleges..where did the summer go?

Sunday, August 15, 2010

Goodbye Just For Now......

I am in Indianapolis until tomorrow.  I am dropping my daughter at college and then flying back to Los Angeles.  Normally this would not be so difficult as I have dropped her at other places and said goodbye for now.  I love where she is and I believe she will have one the best times in her life.

But this is diiferent than a normal goodbye because I have cancer and I never know what the next month, or year will bring.  Particularly lately this has been quite the battle (as you know if you have been reading this blog for awhile).

So this good bye is filled with wonder and worry as I do not know if this is the best time with this particular daughter that I will ever have.  However if you believe in God, sometimes along the way you get true gifts.   This trip was one of those as I am in the midst of chemo and did not know if I would be able to make it.  I have cancer surrounding my pancreas at the moment.  But I got this trip.  I ate everything, went everywhere, and had no pain.  My body and mind were working together.

I got the chance to schlep (to drag your self or things)  :)  in the 100 degree heat, her stuff up to her dorm with her.  We ran all over town...laughed, hugged and cried.  I got that moment of joy and pride that I was looking for.  I am petrifed that this is the best shape I will ever be in again.  But I got one more moment.

This was my true calm before that ever present storm of fighting cancer on an everyday basis for years. I am not going anywhere anytime soon.  I am just not :).

Monday, August 9, 2010

Off blog until After August 20th

Flying with kid to college....YAY!!!  Moving....Living.....Praying...doing chemo (pill form)...making believe I do not have cancer.....working....may be the drug will work....hoping....hoping...hoping....

Have a great August!!!

Sunday, August 8, 2010

Shocked......

This blog is dedicated to a friend I recently had a phone conversation with. She recently got diagnosed for the second time. I felt awful for her.  Cancer stinks because you do everything you and the docs think you should do.  You stay clean for awhile....maybe years.  Your hair grows back.  You go back to your regular (or irregular :) ) life....and then bam!  It's back.

We discussed the shock and surprise of cancer returning.  We did not make it to the hurt, anger, and fear.  I told her after nine years I am still the same way.  Each and every time this disease has gone to a new place and I do something new medically, I am shocked.  I never expect it.  I always think I am going to be ok.

I liked what she said at the end of our conversation.  She said we feel that way because we expect to live a long time and move on with our lives.  We are doing just that...even during the time we have cancer.  We are always living even in the midst of chaos.  She is my kind of gal :).

Wednesday, August 4, 2010

Looking

There are some people in your life that you can not get enough of.  You want to look at them forever.  You see them in so many different ways....when they were younger and you try to imagine them when they are older.  They are so beautiful...no matter what they look like...precious..

They are like a huge fabulously decorated drink on a hot summer's day.  You want to sip a little at a time so your drink never runs out...because you are so very thirsty....and the heat is just going to continue....the drink is just about the only thing that you really enjoy at the moment.

You can hug those people forever..literally...and never let go.

Monday, August 2, 2010

My Favorite Time of Day

My favorite time of day is first thing in the morning.  That split second I open my eyes...I do not yet remember that I have cancer.  For that second I remember what it was like to just wake up for the day. 

I like the night as well.  Late at night when time seems to stand still.  I am reading a book or watching TV...and I am not thinking of anything much.  Its quiet and everything seems ok...even though it is not.

Sunday, August 1, 2010

Dear Cancer

Dear Cancer,

You suck...you have struck again..right when I have to take my daughter to college...right when the momentum is picking up at my business...right when I am starting to make money again...right when I thought I might...might ...just get a life again.  Right when I just started to put you in the back of my mind.  But I guess you did not like it there.  You suck.

So...what will it be this time..little chemo...little surgery..this battle is much longer than I thought it would be.  9 years is a long time.  I was 44 when we first met.  I did not like you then and I do not like you now.  I was so healthy and yet I had a feeling you were there because I was just so tired and my stomach was so bloated.

When I was in my 30's I never thought in million years my life would be like this in my 50's.  I am not sure how and why the dice rolls this way...I am not looking for an answer.  I am just looking for a break from cancer.  I can do the rest myself :).

Our Body Parts

When you are healthy, you look at your body as a whole. When you have cancer all of sudden your body and it's parts get broken up into pieces. 

For example..since cancer has invaded my pancreas..I now think of everything in terms of my pancreas..it's almost like the rest of my body does not exist.  I stopped drinking coffee two days ago just for my pancreas.  I read that coffee helps to dehydrate the body.  Your pancreas hydrates the body and I did not want to over work my already compromised pancreas..so bye bye coffee.  I do love coffee and I had the most huge headache from caffiene withdrawal..but it was worth it for my pancreas.

I have also changed my entire diet in the last few days...all for my pancreas.  I am now eating an alkaline based diet because my pancreas does not like anything acidic...yes..I am nuts...by the way ...almonds are great...they are alkaline..peanuts are not..they are acidic. :)

Now I feel better starting chemo...my body is well hydrated and on its way to be alkaline based.  I actually did do this stuff..no joke...although I am having fun typing it.

I very glad leiomyosarcoma has not traveled to my feet..not sure what I could do there...get a $20 special massage at the mall?  By special foot creams??  Get a pedicure???

I hope my pancreas hangs in there so I can drink coffee again :)

Saturday, July 31, 2010

Sometimes Life Is Just too Big

If I am going to write a blog I need to be truthful..or else what a waste of time.  I am petrified that I am dying.  Not soon...next week or next month...however I am extremely worried about next year.  I said it..next year.  For the first time in nine years my surgeon has refused a surgery.  That is big.  He  wants to see through chemo...some stability in this disease.  He is right...can not keep getting chopped up every few months.

I have cancer on the head and tail of my pancreas.  I am petrified.   You can not just chop up a pancreas without having issues.  I am petrified.  I am very sad.  I really have not had a break in four years.  It has been 9 years....I am not done fighting...however clearly this is a new kind of battle.

This is so big...I miss my old life. I have lost many people these last years.  I do not want to join them quite yet.

Tuesday, July 27, 2010

I Just Hate This!!!

Dear Everyone,

I hate telling you yet again that I have cancer.  I hate making you sad.  I hate that you think I am so wonderful just because I am fighting this so hard.  I would rather be known for something else...like maybe curing cancer :).

I hate that I feel like I have an office at the hospital rather than at my real office.  Actually ...I do not have a real office anymore because I have not worked enough lately to bother having one.  I miss my career.  Cancer has become my career.  That sucks.

I miss being truly joyous.   I think I have forgotten how to do that.  I can smile and I can laugh..and I can fight cancer...however I would not mind one truly joyous moment...at least one more time.  I do joyous really well.  I miss my kids being lighthearted...they used to do that really well too.  I am not sure I will have another moment.  I know they will, even if it takes awhile.

I want you to know I am trying as hard as I can to do this.  I can not imagine not being here anymore.  I know it is a possibility....and yet I cannot imagine....Cancer just sucks.

You Have to Help Your Doctors

I am on a mission.  I want to find an answer where there is none.  It has to be the right answer because if I pick wrong...well that could just ruin everything.  So here I sit.  Surgery first again...chemo again..again and again. Hmm.

Again..rare cancers stink...not reacting well to chemo, stinks.  After doing this for 9 years in a couple of weeks, I am at the helm of my care and my doctors are helping me along.  They give me options and then I do lots of research, think about my body and then I do my best.

I hope that body will do its best now.  I have been in a battle all day with myself to either do chemo or surgery first.  Surgery is winning.  I will call tommorrow and make an appointment with the surgeon for Friday to go in and tell him that I would like to do this surgery one more time.  Then a few weeks after surgery I am going to start some kind of chemo.  I will go into details later.

At first, no one wanted to do surgery however after much reasearch of my specific case and speaking with people who have done this as well....I now feel this is the best thing to do.  Surgery would not be happening if I did not speak up.  I wish I had a better time with chemo.  Historically I do not.

So learn everything about your disease ...your disease..your body and do what you feel is best.  No regrets.
Listen to doctors you trust and then listen to yourself. :) It may save and/or prolong your life.

Dear Body 2

Dear Body,

This is no time to be different!!!!!!  Tumors in armpits...and other strange places that are dangerous is not the way "to stand out in the crowd".  I will not talk about you anymore.  I have so many other things to say.  If you want my  attention, you better do it in a positive way. 

We have a lot of work to do these next 6 months.  Let's do it and be done. Please.  I do not have the time for this!

Sunday, July 25, 2010

Dear Body

Dear Body,

Hi...it's me...your brain...I have been trying to work with you for a long time.  However you are not listening.  I am not sure if I really pissed you off or you are just being stubborn.  I really need your help right now.  I was ok loosing the female parts, my gall bladder, and over 20 tumors in the last 9 years...and even parts of my memory...although that may be due to just being in my 50's :).

Now you have to pay attention and do your job properly or we are both in big trouble. I promise to give you a raise and take better care of you... if you can just cooperate with whatever I have to do next.  I know I have not been very good to you sometimes in the past, but that was a long time ago and forgiveness is so important :).

So let's decide to work better together in the future and get rid of this cancer for at least for 5 years or so?  Not asking for much really...just a bit of a reprieve so I can collect myself and fight on.  I want to fight with you...not against you...

I know you are tired...so am I ...I have a lot more fight left in me however I can not do it without you.  I can not stay here without you.  We will find out how you are doing tomorrow ...I hope you are still with me.

Shocked, Angry, and Nuts

Fortunate for me I have never been truly depressed ....I have been shocked, angry, and nuts!  I am not sure what my results will be tomorrow but I am already nuts because I am not expecting very good news.  I just have this feeling.

And I am just so very sad.  It is a different kind of sad than being depressed....depressed means that you can not function and I function quite well.  It is a sadness that sits in your soul forever...even when you are laughing....or having a fabulous time.  It is just there.  So we shall see.

I want to freeze time...so that I see no more needles, tubes, surgeries, radiation and chemo.  I do not want to be an endless patient.  I do not want to see my body as the enemy. This was not how I pictured my late 40's and 50's...

I know there is always someone with a worse story than mine and my heart breaks for you as well, however this is how I am living at the moment and I am just not sure I will ever escape the whole cancer thing.  So I think I better start figuring out how to survive the next couple of years as well as I did the last 9....hmmm

I want to see my kids graduate college.  All this is just to scary to think about anymore so I am going to a movie and to walk on the beach :).  I am having trouble focusing on things I need to do today...so I am going out to play :).  I will work and plan tommorrow..after I see the docs..

Saturday, July 24, 2010

The Sad State of our Healthcare System

It has taken me a long time to think about what I would like to say here as I have written about this before.  I have a lot to say.  This is not directed at any political party as I am an independent.  I am liberal on some issues and very conservative on others.  I do believe in God.. even though it may not be the one you believe in.  I have been a cancer patient for 9 years next month....9 years ...and the battle is not over...I know people living with cancer for over 20 years...they are living with active disease and they are ill.  It can chip away at your life....and it does.

I hear a lot of talk about cancer becoming a "chronic disease".  I say to that right now for the most part...bullshit.  Maybe it has come to that for a chosen few.  In my 9 years there have been very few truly "chronic" cases.   If you look up the word, "chronic" it means living with illness that is NOT life threatening.  There is a reason they call it "chronic fatigue syndrom".  I do realize it can severly limit your existance for a long time however it is not going to kill you.  Cancer still kills people way too often....and they suffer...they go broke ...their lives change forever....

Our medical system is in shambles...really...and frankly the President...any President ...Democrat or Republican can not solve this problem anytime soon.  It is very complicated on many levels..

First...as I have said before good health care is a basic right of every American Citizen...No one should loose their healthcare insurance because they are disabled and can not work.  No one should go broke and loose their homes because of medical bills.  You should not have to choose between buying medication that you need to live or food.  I have seen this with cancer patients and the elderly that have worked their entire lives.  It is a heart breaker...should they have nothing because our system is so screwed up?

Second...Health insurance should not be employer based...if you have to leave you job because you are ill you should not loose your insurance.  This system may have seemed like a good idea at first and at one time it was, however cost is out of control and how much money are these big health insurance companies earning??   Why should your employer pay for that?  Keep in mind as I have said before...I have read that there are 6 health insurance company lobbyists for every Congress person...and why do you think that is?  there needs to be a better way to do this.

Third...nothing is really being fixed with the Obama plan..there are a couple of good things but basically it is just a band aid over a system that needs a total re do....with people that have no agenda other than fixing the system...

If we could just get rid of the fraud in medicare, we could fund an entirely new system.  There is no quick fix to this...do you really think years of selfishness and neglect on the part of our goverment, banks, and private parties can be fixed in one presidential term of anyone?  If you think so you have a simple mind and even more so if you do not look passed our goverment and see what the insurance companies have done over all of these years....do you not find it interesting...the laws regarding suing an HMO?  Look them up sometime. 

I am so tired of the Tea Party, the Coffee Party, and all of those people who prefer to get everyone emotionally crazy without giving any intelligent solutions to our problems.  My Mom used to say,"if you have nothing intelligent to say, do not say anything at all" , and  "do not complain unless you have a proper solution to a problem".  She was right.  Do you think Glenn Beck stays up at night wondering how he is going to pay his medical bills?  He is a great actor though..I wish him no harm...I just wish he would think before he speaks, and cries all of the time..but he is making a fortune so I can not blame him...he will not have to worry regarding his medical insurance. :)  Nor will Congress..they have a great plan and get to keep theirs forever..even in retirement...both Republican and Democrat..:)

My daughter is studying the 60's right now in her summer school class...remember those days Baby Boomers??  Feminism, Civil Rights movement....people would not accept the injustice they were experiencing at the time...look what happened to us?  We have become lazy and worried more about getting old than taking care of the elderly (which we will be soon enough).   Maybe it is time for us to take a seat in front of the Health Insurance Companies and just say that we are not going to be treated like this anymore.  Maybe it is time..but this time...come up with some solutions as well..Tea Party...Coffee Party...any party...maybe you are complaining to the wrong people?? 

Friday, July 23, 2010

This is a Better Prayer for Me and Maybe You

This is an Irish prayer....I love it however I may have a little fun with the words...:)..

May the road rise up to meet you....

This means you should always be going downhill..(this is the truth)...that your life should be free of obstacles..
I like this ...I really do not mind an occassional bump in the road..however lately cancer seems like a huge boulder that has come crashing down from the mountain and landed right by my toes.

I am tempted to find Dorothy and borrow her red shoes...or maybe at least get some help from those guys she hangs out with..:)

May the wind be always at your back...the rain and wind in Ireland is huge.  They have lots of floods that ruin the crops.  This again refers to few obstacles in your life, as it is always better to have the bad weather behind you.  With that being said ...how many times when recovered from your last surgery or chemo, have you  just gone out and stood in the pouring rain???  I have done this a few times after being stuck in the hospital.  It feels great!

Last...but never least...May God hold you in the Palm of His Hand...Whatever religion you are,,,may God Bless and keep you safe.  I like this...I do not know why... who is here and who has to go...I would like to stay for a while longer...Years..please....I like this prayer...

Thursday, July 22, 2010

Prayers..sort of..

I am having an MRI tomorrow of most of my body.  This is my prayer for the evening :)

God grant me the serenity to accept things I can not change...

Serenity???  Seriously????  Concerning Cancer????  Are you...*^*^*$#%(*(_ serious!!!

Serenity is something I am not feeling at the moment..:)...I am a bit angry and quite petrified..Serenity...well..maybe next year..and the year after...

Courage to change the things I can....I have lots of courage..I am as strong as an ox...but somehow it is not working :(.....I like courage...:)...the change part...it is a constant in my life lately..I am ok with change...just not the kind that seems to be creeping up on me....screw that change.

And Wisdom to know the Difference....so big &*&)(*)*)* deal...I always know the difference...so how is that helping me at the moment??

A friend sent this to me today..I know she was trying to make me feel better...it didn't...I am not mad at her..just mad at cancer.  She does not understand which is fabulous...and thank heaven she has never been sick one day in her life. 

I remember those days and I long for them.

Sunday, July 18, 2010

CJ

My friend that has the same cancer as me is in hospice and probably will not be here too much longer.  Her blog is attached to mine.  This blog is dedicated to CJ and her family.

One of the many things that keep your sanity going through cancer is meeting and communicating with other people like yourself.  The outreach with rare cancers has to be a big effort because there are not too many of us around.  When we find someone like us and we like each other anyway...we become very fast friends.  The normalcy of "getting to know someone" a bit at a time melts away ...it is like an out pouring of words and feelings in an instant.  You are hugging someone that you have known for 5 seconds because it is like hugging yourself and them at the same time.  Looking at CJ and the hundreds of others I have met over these 9 years is like looking at a piece of myself and them at the same time.  I understand ...but I do know why they had to go at that moment....but it breaks my heart and I do not want to be "them" anytime soon.  I will miss you CJ.

I can remember everyone I have met along the way, especially the folks that are no longer here.  I remember the pain and the realization, the acceptance and not...they  were leaving.  I do not want to leave.  I was not ready for any of them to leave.

You can read CJ's writitngs here.  God Bless you CJ.  You did the best you could.  Cancer sucks...If you are going to have this experience of re inventing yourself....I suggest you find another way to do it.  This way is too painful.

Friday, July 16, 2010

Play on Words...contributed by Sharon

I do not know who wrote this however I am receiving this from Sharon and I just had to put it here...please enjoy...LOL

1.  Benign.....what you become after 8

2.  Bacteria....back door of the cafeteria

3.  Baruim...what you do with dead folks

4.  Cesarean Section...a neighborhood in Rome

5.  Seisure...a Roman emperor who lived in the Cesarean section

6.  GI Series....the world series of military baseball

7. Impotant....distinguished... well known

8.  Labor Pain....getting hurt at work

9. Medical Staff...a doctor's cane...maybe with a snake at the end :).

10.   Outpatient...someone who has fainted

11.  Post operatvie... letter carrier

12.  Terminal Illness...Getting sick at the train station

There is humor...everywhere...

Wednesday, July 14, 2010

Memories

All at Once
I see family and friends,
I can hear their voices,
They are saying beautiful words that I remember,
They gesture,
I can hear laughter,
I can see tears,
I can feel them with me.

Maybe I am just dreaming.
Maybe they are really with me.
Maybe the feelings lay somewhere in between being tortured by the memories and blessed by them at the same time.

Maybe I am just dreaming. 

Tuesday, July 13, 2010

A Lot about Stuff....

My friend Wendy's blog is a riot...its about birth, happiness and craziness.  I love it.  Her topic today is about "boobs"....breast feeding boobs :)...she is a nurse in the Neo Natal Intensive Care Unit or NICU...My twins were in the unit over 20 years ago.  One for 4 weeks, the other for 5 weeks.  One of my daughters was so healthy I found out the evening nurses were playing with her at night.  They gave me a picture they took of her sitting in a cookie jar!!!!  (she was only 4 lbs)  At first it made me crazy...that they were passing her around so easily without  me there..but then I figured there is always someone watching her very carefully!!!  :)  They were the best!  Read Wendy's blog and laugh!

I am feeling a bit "stuck" lately. I am working on moving ahead no matter what.  It's like sitting on the edge of a cliff.  You are fine and have no intention of falling however you really enjoy just sitting and looking at the immense view.  I feel like sitting and having nothing change.

The thing is that change will happen no matter what.  You can sit on the cliff and watch or you can take an active part in that change with as much control as you can have....which sometimes is not much :).  So as always I must keep moving forward...even when I just want to sit for awhile.  I did walk 4 miles today in the summer heat. 

I fell like sometimes I am procrastinating when I am writing this blog as I have so much to do!  However writing here is better than therapy :) and at least I know I am helping someone somewhere with this crazy disease....I hope.  I have more scans coming up in the next couple of weeks.  They have to be fine as I need not rest on this cliff any longer.

Sunday, July 11, 2010

Life Is a Bowl of Cherries..with pits in the Middle :)

I love cherries...I could eat them all day long however sometimes the pits get in the way.  This is the way life is sometimes...you are rolling along on the surface of things..getting back into the swing of things and a little pit pops up..just to remind you where you have come from, where you do not want to go back to, and how you just want to keep going.

I had this little bump in my armpit..right in the middle of my left armpit and it hurt.  An armpit is a weird place to have a bump.  I talked to my surgeon about it for a couple of months.  It was deemed a "cyst" and not to worry...I did not worry ..however my 6th sense and discomfort told me to get this thing out...I did...day surgery and very simple procedure.  I was home in 4 hours.  I was working by the afternoon.

I had cancer in my armpit...it traveled from my abdomin to my armpit.  This one of the ways cancer tries to just pick away at your life...it's like chinese water torture...a little drip at a time.  A little drip at a time is ok...as long as we can get it out!!!

Having cancer spread to such a bizarre place is a little worrisome...I need not be like a cherry anymore...maybe a seedless grape would be better...:)

So here yet again is how you have to advocate for yourself and speak up...even if your doctors tell you that you are being silly...you know your body like no one else...speak up and save your life...be quiet and loose it!!!

Tuesday, July 6, 2010

Long Term Care/End of Life Issues

My friend sent me an article the other day about how hospitals end up spending a fortune on their patients during the last months and/or weeks of life on medical things not needing to be done, because the patient is actually dying at this point and should be receiving only hospice care. 

The article also touched on the fact that doctors do not deal well with end of life issues.  Does anyone?  This is such a difficult issue to deal with!!!  Number one..most of us do not want to die and we ae going to fight as long as we can.  I see this all of the time in long term cancer patients.  I have been fighting for 9 years.  We always fight and even towards the end we are looking for new things to try and willing to do almost anything to stay alive.  I have seen terminal patients trying new drugs up until a week before they are gone.  As with the drug Gleevec..you never know when something new will come along and save your life.  So this issue of not doing medical stuff to stay alive is a very complex and individual issue.

As for doctors, even oncologists being able to discuss this with their patients is asking a lot.  Even as an oncologist you are trained to help people stay alive...not watch them slowly die.  That is what many of these docs do.  They do the best they can and often they watch their patients slowly die....10's, hundreds, maybe thousands over a period of years...die.  That has to take a toll on a person.

I do not think it is your doctor's job to talk to you about dying.  I think that is the job of a person professionally trained in "end of life" issues...not your doc.  Perhaps I am inventing a new career for a very special type of person.  God bless that person.  That would be the toughest job.

Sunday, July 4, 2010

July 4th and happy almost anniversary

Last July 4th I was at my friend's beach house watching the fireworks with my boyfriend and others.  It was spectacular however I was also awaiting my 8th abdominal surgery due to more tumors, and my Mom had just passed away.  I had already stopped eating solid food in prep for this surgery. 

This 4th of July I had a relaxing day with a dear friend.  I just had  surgery where they removed a tiny tumor from my armpit....of all places.  Next month will be 9 years of dealing with this crazy disease.  I have now been in good shape now since January which was my last major surgery.

How many surgeries can a person have?  Really...how many?  5? 10? 15? 20?  It seems like I am always wondering...not really worrying...but wondering..I am very tired of cancer.  I am very tired of medical procedures on almost a monthly basis...if not a surgery...a scan of some type.  It is better then the alternative.  :)

I am trying a new diet starting Tuesday...maybe I can keep this all at bay doing a variety of different alternative stuff.  I need at least 2 years of peace so I can really get my life back in order.  Not asking for much I think...just a couple of years to work hard and enjoy. 

The bunny always has the carrot very close even if he does not get it.  Sometimes my carrot seems so far away....but I am bound and determined to get the carrot and even the stick it hangs from :)

Tuesday, June 29, 2010

Alone and Lonely..What's the difference?

Are you alone in your illness?  Are you alone a lot and happy about it?  Are you lonely and sad even in a crowded room?  Are you lonely even with family surrounding you ...are you getting the support that you need in conversation and in the company that you keep?  These may seem like such ridiculous questions..however they are important.

I am very lucky.  I am a pretty independant person.  I do not mind being alone...and I am alone often.  There was a time when I was never alone..not for a minute.  My daughters were younger, I had neighbors and friends in and out of my house on a regular basis.  I had a great significant other however he had to move out of state due to family issues and we are trying to work that out. :0)...If you are a regular here on my blog you also know that I sold my home and moved into an apartment.

It is not the same as my old neighborhood and living in a house.  In my lovely apartment in Los Angeles it is like Fort Knox...no one gets in or out without being watched...:)..and there are no neighbors.  Everyone is very private and in their space.  That is ok with me for now.  I am always busy with work, out and about...I am very social so usually when I get home I am not lonely at all...I am planning the next day and just happy to relax.  However at the moment I am not in treatment and I am pretty normal.

So when you are ill...what is your story concerning quality company and support? Are you lonely?  Do you have a couple of people just to talk about your illness with? ...People that have had or have cancer that you can compare stories with for emotional and educational support?  I know I have talked about his before, but maybe not in this context...of being lonely.

If you need it...exercise the option of seeking those out like yourself.  Join a support group at your local Wellness Community, Hospital or where ever you might find one.  Get involved in something new if you can.  If you are physically able remember that you are not "dead" yet.  Your life will go on either way and doing new things will still make you feel better.  New things do not need to involve a cancer diagnosis either.  I started a business right in the middle of having cancer :)...it helped to keep me going!

Keep moving...exercise anyway that you can...Tai Chi...walking...yoga...does not matter...studies have shown that people who do moderate exercise fare better than those who do not.  I did a lot of conga drumming in my first years of diagnosis.

Remember that there are always choices even in illness...get out among the people that can help you.  If you are not physically able to do so and need a little company...call the folks you want to be with and get them to you.  Remember that sometimes...we have to do the asking ourselves....even when we would rather not.  People really want to help...you have to ask...I have learned to ask...even though most of the time..I hate to ask.

Do not choose lonliness.....the more you stay alone ...the less and less you will move forward.  If you feel yourself going to a bad place emotionally...get help....especially single people on their own...

Saturday, June 19, 2010

Transition 1

We have gone through lots of transition these last years...some good..a lot of it bad and not within our control.  We are still in the midst of it...but in a good way now.  Sometimes you have to go through the bad to get to the good?  Sometimes. 

Sometimes the good just keeps on coming for a long time and sometimes the "bad" does too.  Sometimes what keeps you going is the "anticipation" of the "good" to come and stay for awhile....even when it does not.

I am a long time cancer patient (9 years this September).  I work with a lot of cancer patients going through illness and huge transitions.  It is a hard thing loosing your health little by little...gettting most of it back..then loosing it again..and getting a lot of it back...2 steps forward...three steps back.  Multiple surgeries, chemos, etc.

The stories people tell are sometimes unbelievable...did I tell you the time my belly button just squirted blood into the air..like a fountain?  Or the time I was wide awake.. while my doctor operated and removed the port a cath from my chest?  I can still hear the buzz saw going into my chest :).  These are a couple of my stories and they are true.  I have more.

I get a lot of calls from new patients.  I get a lot of calls from patients that are diagnosed for the 2nd time.  They are petrified.  It is the 2nd time around folks that I really feel for.  It is the realization that cancer may never leave you ....that you will live for the rest of your life fighting this disease....and it could be for many years.  It is the realization that this disease might kill you eventually.  But not until it "rocks your world" and not in a good way.  There is much transition going on here....

Life changes in an instant....in a minute.  Transition is usually not a slow thing. It happens with a word or a gesture.   Our ability to change and re adjust the way we think and deal with our lives is the only way to survive when the going gets really tough.  You must find your way in the midst of so much upheaval.

Learn to find your way.  Seek support of those who have gone though all of this before you.  We are always willing to help.  Take Care of Yourself....as best that you can.  More about transition in the blog to come.

Sunday, June 13, 2010

Dedicating the next blogs to my Daughters, Other Patients, and Families

Well it looks like at least, I have a little "Time".  I will continue to put back the pieces of my life.  In between bouts of sadness, joy, wonder, worry, and procrastination, I forge ahead and hope that the general excitement I feel about change is real.  I hope that it is not some kind of temporary "tease" as a window to the life I might be honored to receive, as opposed to the very "patient" life that I might lead in the months to come.

I always dedicate these writings in particular to other patients and caregiviers, however these summer blogs are dedicated in particular to my daughters.  We have a lot of change going on this summer.  Everyone including me is moving ..all wonderful and full of challenge and promise for the future. 

My daughters...I am so very proud of you.  You have gone through more than me in these last few years.  We lost your Dad and your Grandmother....and me...3 years straight of this crazy cancer.  You know I will be scanned again in September...every three months forever...

Despite such huge trials and tribulations you move forward and continue on your paths.  Keep going..no matter what....looking forward to the future..Always know that moments of extreme sadness and fear will be followed by moments of joy.  Failure and success are just part of life.  You have to fail most of the time in order to succeed again.

Time has a way of passing quickly.  That is why we must try and take the best advantage of the time we have.  It is a gift whether good or bad.  It is all we have while we are here. I am so excited to spend this special time with you this summer.  Driving through West Texas in August does not thrill me...:)...but  like I said...you have to endure a little discomfort to get where you want to be!  LOL

I hope that I have taught you a lot of things in all of these years...what to do and what not to do :) (because I have done it) ..that you have taken whatever lessons from both of your parents and that this info will help you in the years to come.  Know how loved you are and will always be forever. Let's get this summer started!

Wednesday, June 9, 2010

YAY!!!!!

I had decent scans!!!  Nothing to worry about!!! Will post more at a later date...

My Best,
Amy

Sunday, June 6, 2010

Scanxiety

Scans tomorrow...moved them up a bit.  I need to know what is going on in there.  Needless to say I am scared...hate cancer..I do not care who you are... anyone who says they are happy they had cancer even once is nuts in my eyes.  With that being said we are always looking for reasons to make sense of things that happen to us so that we can keep going and "live" a good life.....so let's keep trying to make sense of things that have happened to us...even when there is no making sense of anything here on earth.  We just keep going...keep trying to live our best lives.

Say prayers with me this eveing that I can wake up on Tuesday and not think about cancer for another 3 months.  I feel great however I always have. 

My Best,
Amy

Tuesday, May 25, 2010

Will I get the Carrot?

I have my scans on June 10th...this is a big deal.  If my scans are clean this time around...it means I may have bought myself some real quality time free of disease.  It would be 6 months since my last surgery.  I walk miles.  Life is going well.  I am back at work...doing great... and picking up the pieces.

I think a lot about having this "time".   I will check in after the 10th.  Until then I am going to enjoy :)...I hope you all do as well!

I have been doing this since 2001....I am not going anywhere :).  I will get at least a piece of that carrot!

Tuesday, May 11, 2010

The Walk

Recovering from over three years of cancer is like going for a long, long, long, walk.  At first it is very difficult to get started.  Just when you are healthy enough to sit down, take a breath, and relax, that is when the real work has to begin.  If you have been reading my blog from  the beginning you know it is not just about being a patient for a long time.  It is all of the other stuff that comes with it. 

You wake up on a cold morning with a sweat suit on and a warm jacket.  It is cold and windy.  You start walking slow at 6:30 am and get a cup of coffee.  As you keep walking, you start to pick up the pace.  You go faster. Your coffee is long finished.   You heat up and start to peel away the layers of clothing while keeping the pace.  The sun comes out and you can feel the breeze against your skin and feels so good.  By now you are sweating but you keep going. There is a chill in the air and you are breathing it in until it touches your soul.  You have to do that so it will work. :)  It has to touch your soul.

The pace has to stay with you even when you stop running and start doing your day.  The work is hard.  Not your job...but the work of rebuilding after a long illness.  The exciting part are all the new things that may come your way...but you have to stay healthy enough to have the time...that is the scary part.

So I am just going to keep walking and running...until I can not do it anymore :)...Run with me.

Thursday, April 22, 2010

Trust Your Docs However Still Do the Research!!

Hi Everyone,

This came up in conversation today.  You have to trust your medical professionals.  You do not have to like them however you need to trust them and feel comfortable in your treatments.  With that being said you still have to do your research, ask questions and advocate for yourself because everyone is different in treatment.  What works for one person may not work for the other....so you must be educated in your options.  Do not put blinders on and give your control 100% to someone else.   It makes YOU feel good to be educated about your medical needs as well...and we need to find things that make us feel good...especially when we feel crazy and sad.

Remember that doctors deal in statistics and science so they might want you to do what everyone else is doing.  That is logical and normal to think that way.  However Cancer is anything but and we have to be open to the latest research and what may work as well.   Continue to keep looking even when your doctor is done.  You may end up helping them and future patients as well.

Friday, April 2, 2010

The Bunny, the Carrot, and the Stick

I will not be blogging too much in April.  I will be traveling, working, and trying to put back a few pieces of my life while I have the time :).   So this is the story of the bunny, the carrot, and the stick.  As you can imagine, I am the bunny.  The carrot of course is tied up in the air to the stick and I am chasing it....will I catch it?  Or will I forever chase it.. never really getting the prize.

All the prize is...is at least a couple of years free of cancer.  I can do the rest myself. I am not asking for too much..just a little "free" time.  There are those that think I have already had this time... being here fighting for over 8 years however I do not feel that I am quite finished yet.

So here I go..running as much as I can for as long as I can...all over the place...let's see what happens :)

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.

Saturday, February 20, 2010

Evan Bayh is Retiring..Did you hear his Speech?

Evan Bayh (I really hope I spelled his name right!!) is retiring....a fabulous Democrat respected by both his party and Republicans will not seek re-election.  Did you happen to hear his speech announcing his retirement?  It is quite an eye opener regarding the state of our government.

He basically stated that where both parties are concerned our government is at a standstill.  We are no longer functioning.  There is no cooperation among parties and everyone is out for THEIR own best interest and not ours.  He is choosing not be in a situation any longer where he can not be useful and get things done.

This is not only regarding our health care system but most everything else as well.  I sadly agree with his statements.  I hope all of you have seen the news these last weeks regarding Anthem raising their health insurance premiums as much as 36%? 

I think it is time to forget about which party you belong to and start writing your congess people about what you would like to see done in our government.  If any of you actually researched for real what is happening in our health care system, and what is going to happen in the next 5 to 10 years if nothing is accomplished, you should be very afraid.  I am an insurance agent and I am here to tell that is is quite disheartening.

Baby Boomers approaching the age for Medicare..you will be working forever and wait to see what medicare is like by the time you get there.  Folks now are dealing with cutbacks on drugs and much needed care.  Every year that goes by you will get less and less for your money.  And you will pay for a lot more care on your own when you are ill.

People are so quick to blame and not understanding that no matter who is president the obstacles to accomplish anything is huge.  And change can not happen over night....especially where our government is concerned. 

The news is written for idiots these days ...it is slanted and reported in a way to make you emotional rather than actually telling you what is going on. 

So here is your chance to write your representative and at least tell them you would like to see progress in reforming our health care system in ANY way shape or form to make it better than it is now...Because right now it really stinks.

Chemo Brain

I feel I must discuss chemo brain.  If I have written about it before, excuse me for not remembering.  I do not want to look at past bogs because if I have written about it and do not remember, it will make me feel more crazy than I already am!!!

I do believe this mind altering state is a mixture of too much chemo, being in your fifties, stress, and lack of hormones.  Things I do now that I never did in my forties are the following....

1.  I repeat things a lot.  My kids tell me this all the time.  They let me know that we have discussed that already and ..why don't I remember???  Little do they know I realize this and I am just trying to make my point understood...after all they are in their 20's....LOL

2.  I suffer from CFS disease as well as cancer.  CFS is can't find shit!!!  I have learned to put things back in the same places everyday or they are history.  CFS disease is caused also by moving frequently in the last year and a half due to illness...Everytime you move you are constantly rearranging your life.  Moving during cancer treatment is a little unsettling to say the least!

3. I am easily distracted and I make a point to stay on task.  Sometimes writing this blog is difficult as I sign on here to type, and instead I am on aol or facebook reading mail and or playing games.  Then I forgot why I signed on in the first place!!! ??!!

4.  I must write everything and I mean.. everything down.  I have to make my A, B, and C list everyday or I will accomplish nothing.  Years earlier I only had one list and I did it all.  Now I am lucky if I get to B.

5.  My glasses are always on top of my head.  If I can not find the phone it is because I am talking on it while I am looking for the darn thing.

6.  I can not spell anymore....anymore, I can spell but many other words I can not.  I leave words out when I type and I must review this 3 times before I post it and it still has errors :).  Sorry.

7.  I have lost the capacity to take a nap.  I miss that a lot.  Maybe that is why I forget stuff.  I do not sleep as well either however that just gives me time to get more things done.

THINGS I DO BETTER WITH CHEMO BRAIN

1.   Whatever I accomplish I have done it better than in my 40's.  It may not be as much, but it is better.  It is done with more focus and understanding.

2.  I am smarter now than I was in my 40's.  I may have felt invinceable (did I spell that right?) and strong however I did not know then what I now now. 

3.  I like myself more now.  I may not be as youthful but if I can get healthy enough and given the gift of "Time", look out world.   I know exactly what I would like to do.

So all of you out there with chemo brain.  You are better, stronger, and smarter than you think..take pride in whatever you can do and keep going.  I have lots of blogs in the edit stage ...I just cannot remember how I was going to end them.  If you can remember please come back and read again!