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.