Sunday, October 27, 2013

The Differences Between Abdominal and Lung Surgeries

I am going to be a bit sarcastic here...:)...Having lung surgery in the morning so I think that it is OK :).  And after 12 abdominal surgeries.....2 armpit surgeries and partridge in a pear tree!

1.  Having a lung tube for a couple of days has to be easier than having a nose tube for a few days :)

2.  I will be able to eat the fabulous hospital food, as for the first time a part of my digestive system is not being removed.  Yum :)

3.  I wonder what is happening on General Hospital....I guess I might have time to find out :)

4.  I can eat and drink up to mid night as opposed to ab surgery which I will not discuss the prep for that here.

5. I have done my meditation, creative visualization, massage, yoga, Tai Chi, Chi Gong, ran, walked, and prayed to all Gods all in the last hour...Thanks for reading and see you all in a week or so..more or less :).

So much more to talk about...and we will.




Friday, October 25, 2013

Relax Folks

A few of you have expressed worry over my prior post...please relax ...I am just expressing how I feel and I will be fine...I just think if you write a blog...especially for over 4 years with over 500 posts...you have to be real.

Anyone that thinks that I am in a good mood all of the time with 12 years of cancer...that would not be normal...

When I think of being strong everyday I think of people like Michael J Fox...or some of my clients that need so much long term care services...or Mohammed Ali...a person with a fully functional brain that is a prisoner of his body...can't imagine.

My body is not perfect...however it works...that is why I want to keep it!!!!

It is ok to not be in a good mood all of the time....I am going out dancing this evening :)

Love and Health ...Amy

The Schizophrenic Cancer Patient or How to Prepare for Another Surgery :)

Many times I get asked how I do "This".  This is surviving not only physically but mentally as well over 12 years of cancer with many, many surgeries and much else.   Here is one way that I do it.  I have several.

I have 2 people living inside me :)...the first person is the person that is not the cancer patient.  That is who I really am.  I am not the cancer that invades my body on a way too consistent basis.  I am not the person having all of those surgeries. I am not the person getting an MRI every 3 months for the last 12 years...that is someone else.

I am the person that plans ahead.  I am the person that is still working, walking, dancing, and sometimes just screaming at my other personality...:)  we will talk about her later ...

I am the person that will live ...really live as long as I am able...after over 12 years...I am doing a decent job...I am going to do it better....you will see that other person  inside me take a huge back seat.

The other person inside me is the person that has to deal with cancer...and even she is ok.  She cries every so often and is angry as well...the anger makes her forge ahead much of the time.  She does not uinderstand why she has to do "this" much of the time.  She misses her old healthy body,  although the one that she still has...she would happily keep as long as she could. 

They both know that we really want to stay and do more "stuff"...We are not going anywhere.  We are not ,,,we won't. :) 

Wednesday, October 23, 2013

How I really Feel About Surgery on Monday

I hate Monday.  I know that I will get through it...I am nervous...I know that a little pain is on the way :).  I hate cancer...

I hate making my kids nervous.  I hate asking my friends for help although I know that they do not mind.  I hate again putting my life on hold even for a second.  I hate the fact that I may never be free of this...

I would wish for not money...I would want an extended period of peace in my life without surgery and or chemo. 

I do not want to be known anymore for being brave or strong.  I would give it all up for a few years of medical peace. 

Even strong people get tired of being strong...my 15th or so surgery...I am a little tired of this.  I can't even cry anymore because I have no clue why I would cry...I am just tired :).

Like you..I would just like to be my regular person...whatever that is and not focus on my healthcare ..just for awhile. :)   a little while.  Maybe this time around. :)  Back to regular typing tomorrow...when I am not so tired. Good Night :).

Saturday, October 19, 2013

How to Make Treatment Decisions in Long Term Disease

I have written about this before however as this disease floats through my body the decisions become a little harder to make...sometimes :).  I thought I would talk a little about this process today.

Long term disease presents challenges especially when you fit no mold..no standard of disease, no statistic..no nada..you are in a class by yourself whether that be good, bad and or indifferent!

Your doctor is looking at you and saying,"What do you want to do...these are your choices and there are no right answers".  Of course everyone has an opinion and you are like eenie, meenie, minnee, mo....chemo, surgery and or both, I do not know!!!!!!!

My process of choosing is somewhat analytical however some gut instinct as well.  I think of these things...

1.  My quality of life long term....I have done very well here...most important for me I think...

     a.  How will I do all of things that I have been doing my whole life?  How will this procedure effect my independence as a person?  What might disappear in my functioning and am I ok with that if it happens?

     b.  Will doing this procedure ...chemo...etc increase my survival time...what if I do not do this now...can I live with this tumor for a little while even if it grows? Can I do this a little later??

2.  A long time ago I decided to live with my decisions in treatment...no regrets whether I agree with doctors or not....and a few times I have not agreed and saved my life I think.

Today's medical care is sometimes like exercising while swimming in the ocean....the knowledge is vast however not concrete...it is fluid...you bob your head up and down ...swim...float and figure out how not to drown...you figure out how to glide through and make it to land :).


Friday, October 18, 2013

A Little More on Coping

I will change topics tomorrow...if you can ...help someone like you...or not like you.  Part of me that keeps my sanity is knowing that I have helped someone.  It takes my mind off myself and makes me feel better.

It could be giving them a little piece of information.  Maybe making a phone call for someone.  May be just a social visit.  Helping people is contagious.  You help them....you teach them something....a coping skill and next month they are out helping someone as well...I have witnessed this tenfold...it is heart warming.  It is a burst of energy.

Try it....if you are healthy, do not run from helping someone... a friend/family member that is ill...the smallest gesture can bring the world to someone when they most need it.  A meal....a visit...a phone call.  Try it. :)  You might miss something.

Thursday, October 17, 2013

Coping With Long Term Disease

Just some thoughts before my next surgery on the 28th...coping skills...or not :)

1.  Coping with long term illness is an art.  You learn it as you go along and hopefully what you learn along the way does not make you crazy...and that you can also use it in your everyday life to help with other issues other than your illness.  LOL...I mean this!  I am not crazy!  :)

2.  Understanding coping means that sometimes or for awhile that you just will not cope at all...accept that and then adopt ways to find your way back from that "not coping"..for everyone finding your way back is different.  Find your way.

For me that meant always doing new things, and meeting new people either through work or personally.  That meant my life was always moving on in new ways despite cancer.

If your physically disabled and you can't do things like you used to do...do what you can.  I started conga drumming, took an art class....whatever.

3.  Find ways to accept yourself for exactly who you are.  This is very hard to do.  You are looking to feel like used to...you may never again.  This is the time to grab your life by the .....:)....and figure out the new you...the old you is still in there.

More on this tomorrow....I have been writing for over 500 posts...read some of the old posts...there is much info in there.

Sunday, October 13, 2013

Next Surgery

Hello Folks....

I will sporadically be on and off here for the next few weeks.  I have cases to finish and people that I need to advocate for before I have my next surgery of the lung...a little pest in my right lung and it has to come out.  The procedure is called VATS...you can look this up.

I heard this surgery is a bit easier than all of my abdominal surgeries....no real prep ...and home in about 3 days.  I am hoping so.

I am supposed to heal well with no breathing issues. 

I will be all better just in time for my next abdominal MRI to make sure that the rest of me is still fine...and so we go.  I have no symptoms in my lung ...I walk miles so this decision is a difficult one for me to move forward with.  I got 2 opinions and did lots of research....all...the same ...time to get this out.  It has been slowly growing over a years time.  It is the size of a pea.

I am busy with so many great things right now.  I hate cancer.  This will be my 15th surgery in 12 years????  I really do not know anymore....except I am still here dancing, working and living....wow...more another day.

It is a beautiful fall day here is Southern California!!!  Enjoy!

Wednesday, October 9, 2013

Your Medical Records

Do you ever ask the doctor what she/he is writing on your chart?  Your medical records are yours...not the doctor's.  They follow you for the rest of your life where ever you go.  They are used not only for underwriting in medical insurance...for all insurances...life, disability, etc.

They can be ruined quite easily...a steroid, a major pain medication, the wrong diagnosis, can send your underwriting out the window...    Be aware of how your records are written.  Do not accept unnecessary medications.  They affect underwriting as well.

You are allowed copies of everything.  Get them and keep them in a safe place.  You may need them someday.

Monday, October 7, 2013

Cancer Survivorship......Do Something and Get a Partner

Today's advice is just to get off the couch if you can and do something...anything...make a plan for the week.

And if you need help grab a partner.....an accountability partner to keep you on task.  What is the number one priority on your list and how are you going to make it happen?

You and your partner check in with each other at the same time everyday....every single day.  When that medical task is done...start the next one whether it is on the phone or doing your paperwork.

Every single day get anything done that will move you forward.  This is how to get a bit of control when you fear that there is none.

Before you know it you have achieved so much that you thought hopeless.  This is part of support group tasks.   Find your support group and/or person and be accountable.  

Do not sit alone and wonder how to do things...just do it...even if you make a mistake...you did it!!!!!!

Wednesday, October 2, 2013

Final Thoughts on the LMSDR.org Retreat

I have been thinking about the retreat for awhile...since returned last week...where I spoke in front of about 90 people on patient advocacy.  I also met people that I only know from the internet and we have been talking for years...I met people that only read my writings and I do not know them.  I got hugs from all over the United States and Canada.  These are my final thoughts until we meet again next year in San Francisco.

1.  Again....I am not happy that I ever got cancer. I have learned a few things however I think that I would have learned those things anyway (more later on that).  I would have rather met all of you long gone...in person ..in a much different way.  Cancer still and always will just suck.  Learn your lessons if possible in some other way. :)

2. Cancer among other issues makes ordinary people become extraordinary. This is true of many people that I have met along these 12 years.  I have learned and continue to learn from you.  I am a people watcher in the positive.  Thank You to those that teach me everyday how to be a better person ...even when I do not want to be one....you make me keep going.  I also feel like I must honor those long gone.  You are all my heroes.  The list is endless.

3.  One person ...just one ...is capable of anything...you folks...be...become extraordinary...that is what life is about.  I have no time just to sit...although many times I would just like to do just that.  The ordinary fights with the extraordinary everyday....:)  And being extraordinary is just fighting this disease until one day that you can not.  And whatever else that you do along the way.

4.  Someday when I die ....a million years from now ...no one need cry over the life that I did not get to live....I lived it...need you to know I lived it...everyday...I have no regrets...I did the best that I could and I had...am having a blast...even in this insane disease.  No crying for the life that I may have had without cancer....I still had it.  And part of the reason is all of you here and gone. Thank You.

Whatever your life means to you...go do it...don't be afraid...don't sit around.  Some people become extraordinary in a moment...some it takes years...we are all extraordinary.

Thank You Sharon Anderson...you are extra extraordinary...you knew that all along :).