Saturday, June 28, 2014

Cancer Survivorship...I Can Watch You Sleeping

Hi Daughters...This morning I got to watch you sleep for a few minutes.  In those few minutes I could see every phase of your lives pass by in the depths of my mind, heart and soul.

I could see you when you were infants and toddlers...I could see you in grade school, pre teen and teenagers.  I could see as you are now in your 20's and I am thrilled for your future.

I saw all of this while I watched you sleeping.

And I will imagine your incredible futures while I watch you sleeping.

I will never imagine enough, all the wonderful things that I want for you.  I will never see enough.  But I can dream while I watch you sleeping. I love watching you sleep and I love you.

Monday, June 23, 2014

Cancer Survivorship...How To Get the Most Out of Your Hospital Stay

This last stay was about my 10th...not total stays however on this particular floor with these particular nurses and what they now call clinical partners (those that really do the dirty work and help the nurses).

Most of these folks I just adore and admire greatly.  They are not there just to get paid and they do not get paid enough.  They are professional, caring, and want to do the best that they possibly can. Many I know 10 years that have risen very high as supervisors, etc.  It is great comfort to me at least when I go there that I am in good hands with the best.   With that being said perfection exists no where in life and things happen....here are some tips for you today.

1.  I do not care if you are sick.   Do not be rude.  Being sick and not able to do anything for yourself is so hard.   I know...the release of control as well.  You will not be cared for better by being very rude.  In fact in studies done the results are the opposite.  You get more with honey than with vinegar!  This I know for sure!

2. Your first night out of surgery have someone sleep over night with you at the hospital.  They have cots and your care will be better with a family member or friend with you.  The ratio of nurses to patients is low.  You need extra help the first couple of days. 

3.  Take the drugs for pain and walk!  Walk!  In order to get your body to move more...you have to move more...the more you move the faster you will be out of there.  I had an epidural which was a God send.  Walk!  Get out!

4.  Hospitals are petrified of germs these days and rightly so.  I wear old shoes and slippers.  I do not bring them back into the house.  I throw them away.  Do not bring hospital germs home.  I was told now to let visitors know that when they get home to sterilize the bottom of their shoes.  Sad!

My hospital stays are filled with little weird events.  This time a sad young lady just wandered into my room and sat on my couch!!!!!!!!!!   She said that she did not want to be alone in her room.  She was going to sit with me.  Oy...so I gently told her to stay and I called the nurse.  The nurse came in asap and was flippin out on the inside...cool as a cucumber on the outside...like me!!  LOL

She guided her out and called psych....and moved her room far from mine.  I hope that she gets the help that she needs.  She asked me how I do "this".  I just told her that I pray a lot....not to worry...that everyday you will feel a little better...

Sunday, June 22, 2014

Cancer Survivorship...The Thankful...Grateful Theory

Today is my birthday.  I am 57 today.  And I am happy to be here.  Look for fun hospital stories tomorrow.  Today I would like to talk about being thankful and grateful as well as the idea that in order to have full life you have to have suffered, survived and be able to talk about it.  I say bull. :)  Just bull.

I have been thinking about this stuff a lot.  In today's times for some reason people feel like they have to walk around all day being thankful for every little thing...their coffee...their new dress...their underwear.  And they must share all of their fabulous feelings with the world.   And if you do not do the same thing.......then there is something wrong with you.  Not only is there something wrong with you ...you will also never be a truly "well"  person....in mind, body, and spirit...I say bull. :)

This goes hand in hand with the idea that if you have not endured great suffering, that you may remain stupid and lack emotion and inner awakenings for the rest of your life.  Before this suffering you knew nothing in your life and learned everything from it.  You became this amazing person just because you suffered.  This suffering you must share with all others as well and make sure that it is in "story" form when you tell it, so that people fall in love and trust with you.  You can now become "1" with your audience. :).  I say bull.

Everyone on this Earth has suffered.   Everyone has been thankful and grateful at some time in their lives. 

On this day I am not feeling so thankful and grateful.  And I am allowed. My head is always in a good place.  I am allowed to be angry from time to time and whatever else.  I am allowed to feel...really feel emotion.  And I do not have to tell you about it....at all.

Today I will do a lot of thankful grateful things.  I will go to the beach.....hug my daughter and eat good food.   However in my mind I am plotting and creating.  I am trying to figure out how to stay here on this earth with minimal suffering.  I do not need to suffer to be a good person and enjoy myself.  You do not either.  Love and health.  xo

Saturday, June 21, 2014

Cancer Survivorship...I am Back ...Update and More

Hello World...I have no idea where to start.  Lets us start with a medical update and then we will get to the fun stuff of life and humor.  Yes there is humor and horror in cancer...I prefer the humor...:}

Medical Update....more cancer there than we thought.  The surgery itself went well.  However scans are not 100% accurate ever so here is the deal.  I have much more work to do if I do not go into remission.  I have 2 nasty mets on the head of my pancreas, cancer in my liver...although so tiny...and 2 mets on a rib.  This is getting a little crazy.  This is what we had to leave there.

When I am well I will do an ablation on my liver.  Day procedure.  Then when I recover from that I will most likely pulverize my rib with targeted radiation.  I am hoping to remain stable enough with no new growth to do all of this.  I need the met on my pancreas to remain stable.

And of course to look at me you would never know.  I look so normal....My insides are a mess.

I will go day by day...plan small meetings and events...and have fun.  

This is the medical update....the next posts will not be dry like this ...here comes some crazy info and stories.

Tomorrow is my 57th birthday.  I will sit ocean side and Thank God for this day and everyday I can play. 

I have been doing cancer since I was 44 years old....hard to believe....but not...I am very much still here.

Tuesday, June 10, 2014

Good Bye Until July

Bye till July...:)  I am not sure if I should say something profound, be angry, be afraid, or be calm.  I believe that I am actually numb.  I am numb to the horrors of creeping cancer.  I can not even cry. 

I just know what I have to do and I will go through the motions as I have done for almost 13 years. 

I can not pray to be pain free because I will not be.  I can not pray for a cure because there is none for me.

I am not sure what to pray for anymore ....I just pray.

I pray that I will have no medical surprises.  I pray that I will go through the healing motions as well as I am doing this now....getting ready to dive into the insanity of feeling like Frankenstein for awhile.

I guess I would pray that in a few months my body will allow me to eat well.  I will pray that I have no surgeries for at least a few years....and I pray for my other friends in the fight to stay here with me.

I pray for my kids ...OK :)...I think that does it.  God Bless You All.  Nothing else to say.

Sunday, June 8, 2014

A Simple Prayer to Everyone's God

There is a really long way to go before cancer is really cured...most people do not realize this.  Please Give guidance, foresight, and the right knowledge to show the right people the right way to go....the money is there...help them go the right way....and hurry.

Give my Fellow Survivors the following ...

1.   A break...a really long break to enjoy and pain free if possible.
2.  The ability to accept the way our bodies are today and tomorrow.
3.  The ability for family and friends not to say stupid things to the survivor....for example
     a.   My aunt Dot had cancer worse than you...you should be thankful!
     b.  You have cancer because you never drank that juice, found your past life, or did that enema cleanse!
     c.   My cousin was killed yesterday crossing the street by a bus!   He is dead!   You are alive!
And the list goes on ...needed to have some fun today ...people really say these things!

4.  I do have a blog post on how to really help a cancer person...please read it.
5.  Please do not forget the caregiver...they need help as well.

To all Survivors I pray for you to keep going however that is for you with hope and the love of family and friends...no matter what they say!!!!   They love you!  xoxoxox

Cancer Survivorship...Out of Control Medical Procedures

I will get back to the working series however I am just in the midst of surgery prep with so many other survivors.....

I want to talk about the lengths we go to ...to stay alive  and how as medical procedures become more advanced we will do more and more to ourselves to stay here...how do you know when to stop and enjoy the quality of your life while you are still here????  When do you really know?  WHEN?

You don't most of the time...you just don't.  You are fighting fear and trying to have hope.  You are staring into the eyes of family and friends with pain and longing that there are no words to explain.  You just want to stay here for them....for you....and you have no clue what will happen next...especially pre surgery.

I am very lucky....I do everything independently....you would never have a clue what I have been through medically when looking at me.  I am so thankful for that.  You would never know how I really plan my day :) 

Some of my friends in the long term fight like me....when I read their medical signatures....I am breathless..I find it unbelievable and yet they did it!   Skulls and jaws removed and rebuilt...legs, arms, feet removed...brains radiated...arteries put in different places...OY...and they did it and still here to discuss it.

Last night I screamed at the moon with my fist in the air....help me and my incredible friends.  We want to stay here.  Whoever your God is they...mine...must understand anger....In this case acceptance would be a death sentence.   I will only engage the power of acceptance when I can fight no more.  And I hope I really will know when that is.   xoxox  


Saturday, June 7, 2014

Cancer Survivorship...My Medical Signature and Nothing Chronic About Cancer

Metastatic Reroperitoneal Leiomyosarcoma Sept. of 2001

About 13 Abdominal Surgeries since 2001...next one on Thursday
Lumpectomy Left Breast...LMS confirmed  (last week)
VATS...video assisted thoracic surgery right lung..October 2013 LMS comfirmed
Abdominal surgery April 2013..many tumors removed
Surgery  left arm pit...LMS confirmed
many chemos...doxil...gem/tax...ifosfomide...etc etc

bald twice
blood transfusions
epidurals
2 chest ports
2 stomach ports
1 pic line

and more...I work ...I laugh...I play...I exercise... and I am not done.  People that call cancer chronic are idiots.   There is nothing chronic about this.  I am not done :)..not yet.  Not this time.

Cancer Survivorship...Update Me..and some Humor

Unexpectedly Tuesday will be my last post for about 3 weeks?  I am having another major surgery on Thursday.  And I believe that I will be OK or I would not do it.  So in honor of missing the month of June and being in the hospital on my birthday I have a few things to say :).

I am not done.  I am not done posting here.  I am not done living.  I am not dying.  I will travel in September with my little back pack all over country.  If you want to meet me somewhere let me know.  I am not done.

This is one battle in the 13 year war.  I may loose the war someday however this battle I will win.  I am not done with you cancer...remember if I die so do you.  I can live with you if you can live with me.  You send me to heaven too early and I will make you pay. :)...providing that I am going to heaven :)...where ever... I will get you ...There is no forgiveness when it comes to you....ever.

I think people who say life is simple are just silly.  Doing things are simple....both the right and wrong things....having a great life is not simple.  We want to live....really live to experience things that are not simple...or else we would be bored.   I never want to be bored.

People are not simple...people are very complex...that is why I love people and want to stay here.  I am always wanting my make my world a little more interesting with wonderful people in it.

Money helps however it will not make you truly happy...although it does buy great healthcare...:)...this I know for sure...:)...so perhaps it does buy happy...because your health is really everything...it is everything....

Your body working is a gift and you will not know that really.... until you loose it ...and try to save it. xoxoxo