Thursday, May 31, 2012

Amy Resiliency Blog on the Way

My new blog is in the process of being organized...It is interesting to see over the years where people have read the most from this blog.  I am not surprised that the most "looks" have been on posts that are about our health insurance system and why it is so awful....the posts I wrote about sex and cancer.....and my own emotional craziness and how I come back from that :).

The next blog will be much more organized....I will stay more on topic for awhile so that you do not have look all over the place for info on specific matters.  So I guess if I go a little crazy for awhile I will type more about that!  LOL

I will type everyday once amyresiliencyblog is up and running.  There is a lot going on with me this summer.  I will be traveling all over the country and seeing many sarcoma survivors that I have known for years.  With their permission and without using their names...I will tell their stories.

I have a major event coming up on July 22 nd here in Irvine California about "Survivorship"...details to follow...if you can make it...well worth it for valuable info and inspiration.

I am going to start public speaking again...if you have an event that you would like me to speak at regarding survivorship...long term care and patient advocacy, please contact me...Normally I speak for free...you pay my expenses....unless it is really far :)

So join me in watching me re invent myself in a big way.  Never forget who you are in this battle of cancer...it is your mind that is the hardest to deal with...it can get you if you are not looking :)..You never know when that next chance will come...even after doing this for 11 years..






Tuesday, May 29, 2012

The Summer Belongs to Me!

My 11 year anniversary of this craziness is August 26th, 2001.  I remember the exact moment that my ob/gyn told me what was going on.  I remember after my first surgery ...I was home recovering...watching TV like millions of others seeing 9/11 happen.

I will make 11 years in fabulous health with leiomyosarcoma.....this rare cancer  ...I will turn 55 in June...I look forward to the next 20 years...

About two weeks away from amyresiliencyblog.com
Summertime!

Sunday, May 27, 2012

The Waiting Game

Well I showed up today...and I wait until Tuesday for the results.  I saw all of my friends...all of these young men that have worked at Cedar Sinai for less than 5 years...I have been there almost 11..lol...seriously...they are gentlemen and I always make sure to show up when they are there because they find my veins and they are so polite.  Every experience...even those medical should be as pleasant as possible ...right?  Yes!

So now I wait...if there is something there... between now and Tuesday..can I just wish it away...if I pray long enough..eat the best foods..promise to never lie again :),....can I melt the bad stuff away?

Should I eat a gallon of coffee ice cream ...because whatever will be ...will be..like the song...I am going to get the ice cream :).

Have a great rest of the weekend!  I will...and a better week I hope!


MRI'S and CT Scans

If you have scans every 3 months like I do...for almost 11 years...it still sucks..:)...I am going this morning...here are some tips that might make your a life easier on these days...

Learn to meditate and do creative visualization..I am serious..when I slide into that MRI tube I am envisioning myself dancing in Maui.  I am thinking of people and things that make me smile...I am trying to get into the zone....One time I almost fell asleep and almost forgot to breath for the damn machine...

Practice creative visualization at home in your bed...make believe that you are actually in the tube...everything takes practice...deep breathing...

Finding veins.....if you do scans early in the morning when you have not had a chance to drink much water this can make it difficult to find an easy vein...I know that you can not eat or drink 4 hours before...so schedule enough time to be able to at least drink in the morning to get your body hydrated....

Finding a vein means everything ....getting poked repeatedly is awful...get hydrated.

One very important tip for the newly diagnosed...if you meet someone that you like...that finds your vein in a second...you can schedule your scans when that particular person is working.  Finding a vein can make the whole process easy or terrifying.  Always try and make your life easy throughout this process.  An easy needle placement is everything to me on this day.

Coming soon.....amyresiliencyblog

Friday, May 25, 2012

Before the Tears Comes the Smiles

Joe Biden (our Vice President) said something beautiful today when honoring our lost Vets.  He said, "There will come a day when the smiles come first ...before the tears.  He understands.  He lost his first wife and 1 year old daughter in a horrific car accident in 1972.

We must have joy in our memories...not to live in the past..not be haunted by it...but to have great joy in remembering it...and big smiles. :)  Thank You Vice President Biden for the reminder.

Thursday, May 24, 2012

Scan Craziness

I have already cancelled my scan appointments twice ..:)  I am going Sunday...I am ...and whatever is there I do not care...I am having too much fun right now and you ...cancer will not take that away from me...not this summer..not this fall...not this year!

Keep your eyes out for amyresiliencyblog.com...coming to readers everywhere shortly :)...no cancer ..not now..not for a long time.

Wednesday, May 23, 2012

Great Time to read Older Posts

You know I have been doing this crazy cancer since 2001....I will be having a new website within the next couple of weeks.  This is a good time to read old.....very old posts...they explain a lot about going through leiomyosarcoma....this very rare cancer....

Take moment and go through the older posts...there is a lot of info there....

Lots of Love..

Tuesday, May 22, 2012

New Blog and Dedication

Very Soon I will be having a new website and blog at amyresiliencyblog...As the Team at Mustard Mouth Marketing gets this up and running I will guide you to my new place.  I have have been typing here since 2009 and look forward to continuing my blogging for many years to come.  I have other things on the horizon as well very much connected to my writing.

I will be typing along the same lines..just more organized and detailed regarding my journey and how to help others.

This blog saved my life many times...not my physical one...my mental life...often not knowing how to work things out in my mind...typing here helped me immensely.

I would be standing in the shower in tears and words for titles and stories would just come to me.  The trick was remembering until I was finished! :)  Do they have waterproof pads and recorders?

I will continue to type here for a bit longer...I will continue to let you know when I actually have my new website up and running...it will be in the next couple of weeks.

This new and old website is dedicated to the team at Mustard Mouth Marketing ...I could not have typed all of these years with out you. Thank You all for doing this with me.  It is going to be fabulous.

This sea of change is also dedicated to every person that has ever read this blog and suffered through the hardship of any cancer....or any serious illness...being critically ill is horrible and you must plan mentally and physically the best that you can...I want to help.  You have all helped me.

Last dedication to my wonderful daughters....I am so proud of you...can not say that enough...you all have such fabulous and grownup things happening right now...I am so happy that I get to see it all unfolding..keep doing what you are doing and I will keep watching, crying tears of joy...I do that a lot lately...:)

One more thing...lol...I dedicate this blog and my future one to myself....I am still here...How amazing...I know not why...I am just still here!  Lots of love....






Sunday, May 20, 2012

What You Look For...You Will Find

I have started running at night recently...I have no idea why except that I feel so much better doing this...I was not sure that I could ever really run again...I am not running far yet...:)...I remember reading once of the story of a man that was suicidal and he ran because he wanted to kill himself....he was actually trying to give himself a heart attack...instead he became a world class runner and was never depressed again :).

I feel more like I am running to something only I have not found it yet...I will :).  I think whatever you are looking for in life ...you will find...if you are looking for hope ...it will be there...looking for misery...that as well ..I can not speak for those that are dying ..because thankfully, I am not at that point and I have no idea how I will feel when that time comes.

For now I know that as long as I am able to live a full life ...that whatever I will really look for ...I will find.  What are you looking for ...keep a journal....maybe in your own words...you will find it .

Mindset Training/Your Identity

I have learned recently that even though I have withstood the test of time in cancer and fought so very hard...there have been way too many moments when I let it get the best of me.  It was not just about crying one day ...or being scared...or whatever...recently I think even I let cancer invade my soul..my mind in a very deep way.  I let cancer get the best of me...even when I thought that I was winning.  I am not blaming myself for anything and/or feeling bad about it...I just have to change my thought patterns...whether I win this war for a long time or not.

You can get used to loosing ...you can get used to feeling bad....you can get used to struggling on whatever level...even when you appear to be doing well.

I went to a millionaire mindset training class yesterday....it was all about how to change your patterns of thought on a very conscious level to feel better, and do whatever it is that you are trying to accomplish in life, no matter what your circumstances...it made me realize so many negative patterns that I have created in my life.  I had no idea.  Remember that this battle is not over until you really can not fight any longer.  And I have much fight left in me.

So who were you before cancer?  I know I am asking you to do a lot...who were you before this?  What is it/was it, that you wanted to change in your life before cancer?  After cancer?  During cancer?  Are you a caregiver?  What can you make happen for both of you?  I am asking a lot....

We get one shot in this life...cancer wins not because you or your loved one passes away...it wins if you let it steal your heart and soul in the process...do not let cancer win in this way.  Maybe you will be a here a long, long, time and still have a wonderful life...I am asking a lot I know.

Friday, May 18, 2012

Tuesday Scans

I have scans Tuesday...I am way passed what they call "scanxiety".  That is a good thing.  I have so many other things...some fabulous and some just uncertain going on...I just can not even think of bad scans....just the thought of one more issue and I could go a little crazy :)  :)...so look out!  I have had three surgeries since December...one of them major....that I will have none of this nonsense right now!

September will be 11 years that I am doing this thing called leiomyosarcoma.....if you are struggling thinking your life may be cut short...maybe it will not be....maybe you will just be here a long, long time....a very long time...and in very good shape.

I can not say that this has been an easy road...it is full of twists and turns...but I am here...ready for my..ok...lets do the math...

A pelvic MRI every three months...chest scans every three months...for 11 years....44 Mri s and 44 chest scans ...all those needles..and I am here!

Wednesday, May 16, 2012

Wills and Trusts

I got more views talking about sex!  No surprise there right???   Ok...Back to healthcare...those that would like to hear more about sex and cancer...later..now back to managing your healthcare...too much for me to talk about sex and cancer 3 days in a row...just kidding...

Lets get back to being practical and taking care of you and your family.  I am not an attorney...however when was the last time that you reviewed your will or living trust?   Each state is different.  California is a living trust state.

Is your healthcare directive up to date?   If God forbid something happens to you does the hospital have a copy of your healthcare directive?  If you are a single parent or both you and your spouse/significant other die at the same time have you indicated who would be legally responsible for your children?  Do you know that if you have not done that ...they could go into foster care even though there is a wonderful family member willing to take them?

Do you know that if you do not have a will or trust done that all of your finances etc are of public record for all to see?

Not having a will and/or trust can cost your estate thousands in taxes ..perhaps millions of dollars?   Having your trust properly done gives your family peace of mind when they need it most.  It protects money and your family's sanity.  Do not leave this earth without properly taking care of your family in your death.

Most estate planning attorneys will see you for an hour for free...it is one of the best hours you will do...and do not wait until you are sick....do it when emotions are not running high and good decisions are made for the right reasons.

Monday, May 14, 2012

Sex and Cancer 2...

I was lucky.  I had a great relationship with someone for a long time.

One of the reasons that I was lucky is that he taught me how beautiful I was through many surgeries, chemos, radiation...he was a blessing for so many reasons at very special and difficult moments.

I learned from him that intimacy is not really about the act of sex...its about communication, touching, loving, and laughing...and laughing....and laughing.  I never felt ugly around him...I was too busy just wanting to be with him.  I was very lucky.  I know it.

I would say to you be open and honest with your partner..and yourself...seek out counseling...sex is not about having this huge orgasm together at the same time...it's about love and just being with that person.  Get help...talk about stuff..do not be silent...silence is not golden here.

I wonder if I will ever get to have that kind of relationship again. I am sad about the prospect of not.  However if that is what is then I will find strength in my fabulous friendships and enjoy.

I know in cancer (depending on where you are in the process) SEX can still have a big part in your life...if you let it.

Be inventive...My friend has a company called Entice.Me..Organic Sexual toys etc...check it out :).



Sex and Cancer.....1

I had a request today from my friends at Womanology ( a fabulous place in Irvine for all aspects of Women's Health) to type about Sex and Cancer.  I have been mulling this around in my blog brain all day wondering how personal I should get...so here goes...I do not think one blog on this subject is enough...It is a very big subject..

I have talked about this disconnect before that occurs between the body and mind in cancer.  Whether you have active sex with a partner or just yourself all of a sudden you have cancer and part of you hates your body and what has happened to it...your body just became the enemy.  And you are fighting to get it back and love it again.

Whether it be from the scars of surgery or chemo...this is a big deal.  Its not just about the way you look...its the way that your body is not working anymore...you are chemically and physically imbalanced and it feels awful.

Maybe you will be once again the way you were and maybe you will not.  Maybe the idea of someone touching you or you touching yourself is just repulsive.

Whether or not you ever have sex again...you still have to learn to love yourself all over again...and maybe you did not in the first place and now it is worse.

If you are single and have cancer perhaps you wonder if you will ever have a significant other again.  You may have to learn to forge life on your own.  The thought of that can be sad or a relief depending who you are.

If you are with someone perhaps you will worry that you will not be able to satisfy your partner again or your self...you may be embarrassed of the new you and showing your body to someone....even if it is your life partner.

So how do you get some normalcy back in your life?  next blog....




Sunday, May 13, 2012

Happy Mother's Day

Happy Mother's Day to all of the Mom's that have struggled with cancer...

That have wondered if you would ever see your kids graduate kindergarten, grade school, middle school, high school...

That have ever wondered if you would see your kids get married, or ever be a grandparent.

That have ever wondered if the treatments and surgeries would ever end for awhile and that you would have some peace here on earth.

To those Moms that have lost children to this disease...you especially...there are no words.


That have ever wondered why some people run away from you while others run to you :).

That have experienced one day when when the threat and/or invasion of more disease is just so overwhelming, that screaming is the only release that you can find.

Happy Mother's Day to the strongest group of people that I know.  Reach for your stars whatever they are.  Give your self blessings and hugs ....and move forward as best that you can.

God Bless and have a great day!   Yay Moms!

Friday, May 11, 2012

Over Ten Thousand

Thanks to everyone that has ever read my writing...I now have over Ten Thousand views.  I know that is not much compared to other sites...however it's a lot and it means a lot!  Since 2009 writing has actually saved my life and I have never minded sharing...it could help you as well.

I will start writing more technical stuff again...I am done with emotional stuff for now. :)

Lots of love....move forward a little each day.

The Importance of Time

Time is life unfolding.  Every second ..and change is always ...so for me time is so important, not just because it might be limited...who knows....it is so important because those special people that come in and out of our lives..their time is limited with us.

We must enjoy those folks with us at the moment as best we can.  Those that are toxic...if you can not help them...let them go.  Fill your life with fabulous people that will enrich your life, give you joy and wonderful memories.  We must make wonderful memories...for those we leave behind and those that leave us.

Time is precious.

Wednesday, May 9, 2012

When Do You Stop Treatment and Say Goodbye To Those You Love

I am addressing this today because of a big discussion going on elsewhere about this subject.  I am doing well.  This is just my opinion.

There are two components to this issue.  One is the physical issue.  When your body is done being here on this earth, you are finished and there is not much else that you can do about it.  But what about your mind?  What happens in the disconnect between your mind and body?  What happens when your body may not be done however your mind is?  Maybe your body is really done as well and you just do not know it... however your mind does.  This issue of when to stop treatment gets bigger everyday with advanced procedures to keep us alive.  When do you stop?

Doctors are not right all of the time...neither are the best patient advocates whether that is you or whoever.  This is a complicated issue unless you are really at death's door.  How many surgeries do you have?  How many chemos...how much radiation...clinical trials?  Will you be the next miracle? What about quality of life?

For every person these decisions are different.  Do not make them alone.  Seek counseling from your doctors, therapists, family...do not make a quick decision in anger and sadness.  Make the right decision for yourself in peace whatever that decision is.