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!

Saturday, February 13, 2010

Caregivers "Happy Valentine's Day"

Caregivers are very special people.  They could be anyone....a significant other, friend, or paid angel.  No matter who they are, if they are good at what they do, they are gifts from God.  They can make an otherwise horrendous day into as joyful one as possible....just by doing the smallest things...like bringing you your favorite ice cream...or massaging your feet....or helping you do things that you just can not believe that you even need help with .....the smallest of things.

So this day of Valentine's Day is dedicated to you.  Remember that caregivers need care as well.  If you know a full time caregiver for a sick person...call them today and ask what you can do to help them out.
Maybe that caregiver could use time for a movie or a walk in the park for an hour....or maybe they need to go somewhere and just scream.....they need to go nuts from time to time as well as the patient!!!  :)

I will talk more about caregiving in future blogs...however right now I am going to eat a chocolate truffle....as I am most of the time my own caregiver as well as patient! 

The Walk

I can't drive for another week or so.  I am staying right now with my daughter in Los Angeles, right near UCLA which is adjacent to a neighborhood called "Westwood".  30 years ago when I first came to Los Angeles from New York, Westwood was a "happening place".  There were great restaurants, places to go listen to music, and fabulous cafes.  Since the economy fell it is still a decent place with coffee places, movies, and some up scale chain restaurants...but it is not what it used to be in its' time.  I hope it comes back someday.  It has great potential.  There are some gorgeous homes and great apts. in my daughter's area where I walk all the time.

I grew up and lived in houses most of my life.  I am a very outdoor type of person. Being in an apartment for an extended period of time when I am well can make me nuts.  I also live in Southern California where although it does rain from time to time, I admit to being totally spoiled weather wise.  Today it is 75 degrees and just gorgeous!!!  Who can stay indoors on a day like today?

I often wonder how well I would heal if I lived where it was cold?  Where would I walk everyday and soak up the sun?  How soon would I get house crazy?

My daughter left me this weeknd to go see her sister about an hour away.  That's great and I have friends picking me up later and tomorrow however this morning I woke up with a lot of energy and decided to walk into Westwood.  I wanted to take myself out to breakfast.  There is a lot to think about before this "walk" just 2 weeks post op...like what if I need a bathroom and I am in the middle of a residential neighborhood?  Do I stop at a complete stranger's house and ask to use the restroom?  What if I get stuck????  Or just tired?

Remembering what it was like not being able to get out of a chair or able to walk a few steps ...being the crazy patient......of course I am doing  this walk today.  I made it to Denny's as this is the closest breakfast place near my building.  I did want to make it to the nice cafe however it was 4 more long blocks there and back...it was just too much for today.

I sat there for a loooooooong ......loooong..time.  I was tired...I ate my breakfast very slowly...and even had coffee!  It was the best breakfast I have ever had because I walked there by myself.  I was able to eat everything with no issues.  I walked back at a semi decent pace.

To healthy folks these things are ridiculous.  These are actions we take for granted everyday.  To people stuck in chronic illness or recovering from surgery.  These things are "big".   Remember...keep moving ...do a little more everyday!!  Keep moving.

Friday, February 12, 2010

The Little Things that happen after Surgery

Surgery is what is and sometimes if that is all you had to deal with, it would be OK.  But sometimes it is the little stuff that just brings you over the edge and makes you a little bit nuts!  After this surgery and the last one I developed  mysterious red dot disease.  No one knows what these dots are or where they have come from.  They are all over my body and they last a couple of weeks to a month.  They itch like crazy and are sometimes painful....I have gone to 2 docs about this just to try and get some relief from the itching....The docs feel it is related to my immune system however no one knows what they really are...maybe just a virus. I even had them biopsied.

I hate red dot disease as it always happens right when I am starting to feel pretty good.  It also leaves scars which I feel I have enough of at this point!  

In the hospital I dropped my cell phone and broke it into a number of pieces.  I wish I had thrown it instead.  It would have given me much more satisfaction! :)

I hope my coffee maker does not break as I had my first cup of coffee in 3 weeks today and it was heaven!!!

This is a very short blog today as I am way to itchy to sit still.  I am the patient without patience!!!

Thursday, February 11, 2010

The Power of the Mind or Presence of God?

Although this surgery was easier than the others because they removed less...an abdominal surgery is what it is...any surgery is what it is and when you have had multiple rounds, it is difficult.  This time around I had an intersesting experience.

I woke up from surgery shaking and freezing...I felt like my body was in an earthquake and I could not stop the huge amount of shaking that was going on.  This has happened to me before.  We believe it to be a reaction from the anethesia.  I hope I spelled that right :).

As I was laying there I was trying to use creative visualization to calm down and get a grip on things.  I decided to call on a couple of people I knew very well that had passed away.  I thought of them swooping down, hugging me, and warming me up.  The two people I picked were at random and all of a sudden I became very warm and stopped shaking.  I imagined them just sort of laying all over me.  I had this crazy sensation of warmth for about 5 minutes.  I totally stopped shaking and gained some peace for a short time.

After the expereince was over I started to shake again however not as much.  I thought the whole thing very weird that it actually worked although for just about 5 minutes.  It made me think for just a moment as to what actiually happened.  Eventually of course I totally stopped shaking and was safely tucked away in my hospital room shocked at how well the epidural was working and the fact that once I warmed up I was barely in any pain.

Thank God for epidurals!!!!!!  And thank heaven for angels...whether they be in just my head or for real. :)

When is "enough is enough?"

We are living longer and longer.  Diseases and illnesses that would have killed us in a short period of time years ago...now we live years with all kinds of crazy stuff.  I have had cancer since 2001 and consistantly since 2007.  In the last 18 months I have had 3 major abdominal surgeries, and 2 chemos.  There are those days when I feel like a ripped up cleaning rag just laying on the floor waiting to be picked up and thrown away.  It's the holes in the rag...I feel like I have so many holes in my body!!!!!  As you move foward in your illness the concept of "feeling fine" becomes a new experience everyday.  The idea of "feeling fine" becomes conceptual as you move along.  You learn to accept the "new you" each and every time.  It may not be how you would like to feel, however it is better than the alternative :).

When is there too much chemo..too much surgery...when is enough?  I think about that a lot these days.  I wonder when this endless cycle of being a patient will be just too much for me to take.  A dear friend said to me recently...I do not think he knew how it sounded...he told me cancer is my identity at the moment.  I thought to myself ..how very sad is that and what is the point of doing all of this all of the time if there is no "real living" in between?  There are not right answers to all of these questions.  You keep going as long as you can.

For me at the moment I have had enough surgeries.  My insides can withstand no more at the present time.  I am so very grateful to be here now.  I am only hoping I just bought myself some years of peace and maybe if I am lucky ....a way back to a "normal" life for awhile.  I am a little tired of my body being opened up all of the time....poked...and full of toxic chemicals.  I am 52 however I feel like I am in my 80's at the moment.  I know in a few weeks after healing more ..I will feel much better.

My only words of wisdon for those going through chronic illness and pain are that you must find things to be happy about everyday and keep moving forward as best that you can.  It is easier to wallow in misery than to find new ways to enjoy yourself and keep going......keep going....As long as you can move you never know what might pop up.  Keep going.

Tuesday, February 9, 2010

I Got to Keep my Kidney!

Hi Everyone....I am back.  I made it through another crazy surgery however this one was a huge surprise in a good way....It turns out there was much less disease than we thought and the only thing I lost were three tumors and a gall bladder...not bad?!  I did not have the terrible invasion of body parts that we thought was there.  Thank You God and whoever else may be involved!!!  If there really is a cat with nine lives I am surely related and I hope this was not the last one.

With all of that said....surgery, cancer, chemo, radiation...it all sucks...there is no other words for it that I can type here.  I am so tired of surgeries and everything else.....I am taking a break...no treatment...no scans...no nothing for the next three months.  I am going to work and play the best I can ....as if these days were a gift and fleeting...

I am quite sore and not allowed to drive yet.  I am learning how to eat yet again....and this is not the way I wanted to loose 8 pounds.  I will be blogging quite a bit as I have much to say after this last experience.

I have no idea if this ^*%#^%*^(*&^)*)(*...disease is coming back quickly or giving me a much needed break....

Sorry for the cliche......everyday you are healthy is a gift....do not complain...find something to enjoy everyday....