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 :)