Happy New Year 2015...Cancer Survivorship

I actually do not like the holidays very much.....I admit it....I do not think that I have liked holidays since about 2009.  I am all for honoring everyone's religions however for me there are just too many reminders of what was and even what is.  And I am not angry or depressed.  I am just telling the truth. Because cancer really sucks and too many people have passed away and more will .....cancer never leaves me alone ...not for a minute.  And sure I forget every so often when I am busy working, having fun, and/or with wonderful people...but that deep joy in life that I used to experience on a daily basis...that I can not find....I just can't find it no matter how hard I try for so many reasons.

Once in awhile I have a glimmer of it...I remember it really well when I watch the sunset, look at the moon, or stare at my kids.  But it does not last for long.

And I am not depressed.  I am always thankful/grateful for a good day...I am not when the days are not so good.   I find my sense of humor saves me every time.  I do look for the humor in everything...because there is humor in everything.....I have a warped sense of humor :).

I am telling you this so you that you can think this way too and it is OK if you are or have been a cancer patient.

Go scream in your car...bang a few drums...hug people that you love...see funny movies and  then get on with it the best way that you can!!!   xoxoxo  It is OK.  It is just a holiday...whatever that means :).

How to Help a Person With Cancer Over the Holidays..2014

I am so fortunate this year.  I am doing well.  Read the post before this.  However I thought it so important to talk about those that are not doing so well this year.  This is how to help them in a very real way.  No minced words and no bull shit.  Here goes.

1.  If the person  not feeling well wants company...Go see them!  Call them and say, "I would love to see you for a little bit.   Are you up for company?   Can I bring you some soup, a truffle, a magazine?  Can I hug you when I see you?    What exactly can I do for you?   Need some shampoo?   LOL....seriously...you will hear that person smile through the phone!   Go!  Forget the flowers....they die. :)

2.  Be yourself on the visit.   That person is still that person.  Talk to them like you normally would above and beyond cancer.   Ask me how my life is other than cancer....it may seem silly however the rest of that person's life still exists....ex...what are your plans after chemo?   How is your job?  Etc.   How can I help along the way?  You can say the wrong thing.....so what?   You do not know until you try.  Saying nothing ...not visiting is worse.  Being ignored is worse!

3.  Out of the mouths of babes...:)...years ago I went home from the hospital with a lung tube hang'in out the side of my body for about a week.   It looked gross and would fill with fluid.  If you know me...you know that would not keep me in the house.  I was not in pain at all.  I was sitting California Pizza Kitchen and was being stared at from all over the place.....a kid about 6 years old actually came up to me and asked, 'How does that thing feel?  How can you eat?". 

I gave him a big smile and said," Thanks for asking...I eat just fine and pretty soon they will take this out and I will be good as new"  You young man are a wonderful person and way beyond your years.  Then everyone stopped staring...smiled ...and perhaps saw me as a person having a good day.  It just takes a few words to clear the air.

4.  Dear people with an illness.....Remember that I am doing "this" since 2001.   Do yourself a favor...develop a thick skin.  You also have an opportunity to help others learn how to be around you.   Frankly it is not all about you, me....if you do not want to be by yourself you must accept that fact that your friends, family, strangers are going to say really stupid things to you.   Your choice is to either teach them or to walk away...and yes some will walk away from you as well.  It is ok for you to walk away as well and find new people.  They are out there even in cancer.

To the people at large this holiday season.  Be specific on how you would like to help someone and follow through.  To the patient...I hate the word patient...such a misnomer...Take each day at time...speak up if you can...if not ..pick a great persona and ask them to speak up for you.  Keep going.

Do not be that person that just shows up at a Funeral after not seeing that person for years.  Do not be a funeral person and not a real person.   That person that passed could care less if you are there and their family could care less as well.  Seriously.

How to Survive Cancer ...Holiday 2014 Post

I have started this post many times and I find myself uncharacteristically speechless.  I usually always have something to say about everything :).

I have said this many times however for me cancer seems like a schizophrenic process.  Because I have been doing this for so many years with so much medical stuff...on this day I can not believe that I am still here.

Leiomyosarcoma is so very rare however not to me as I have met hundreds of people that have passed from it.  Currently I am watching a wave of folks I know that are slipping away.   I can do nothing.

I can live with cancer if it can live with me.  I say that so often.   If I die cancer so do you.

However you have so much been in the way of my "normal" life.  You cancer are my secret life...the one I do not discuss personally very often anymore.   You are the one that often takes the wind out of my sails.  You are the one I hate every day since 2001 and I want to kill you.  I do not know how.   I have tried everything....everything....that I can reasonably think of other than hanging upside down by my toes in the middle of the night.

And yet I am still here and functioning well enough....after about 20 surgeries, chemo, ports, pic lines...lung tubes etc I am still here.  I was in the hospital when both my parents died and/or were dying.   My ex husband passed away.  I arranged my Mom's funeral from my hospital bed years ago.

I have moved and lived all over Southern California since 2008 on purpose and met so many amazing people.   It has been quite a journey.

I have a little news for you cancer.  Don't waste anymore of my time.   I know that you are sitting in the wings.   I see you.   I feel you everyday.  I am done with you for now.   What will you do next? Take a long break I hope.   A few years  would be nice.   I could get a lot done in that time.....and play with my kids.

I need to start and finish a few things.   I need to chill out from food poisoning a couple of weeks ago ....I thought that was you trying to kill me.   Ugh.  PTSD....LOL....

My friends struggling with cancer, I wish you love and survival skills like I have.  I wish you time.  I wish you to be pain free and dancing with abandon.   I wish you life!   xoxoxo

Lots of new things on the way.  I am not going anywhere.  Next year I will smile at this blog post as I have since 2001....with wonder and amazement...I did it...I am still here!

How to Be a Cancer Survivor....Update Amy

Hi all....long time no post.   I am good.   I now have cancer on my pancreas, in my liver, and in one rib.   It is small and I function well .   I am in no pain.    I exercise.  I have energy.  I work, laugh, and enjoy.

Every single day I am amazed at my good fortune and petrified at the same time.  Over 600 posts later.  We keep going.

I have started a home based business with Send Out Cards.   I love it.  If you want info please e mail me amyreg@aol.com.    I have big goals.....join me.

I am surrounded by incredible people with my work as an advocate, in Send Out Cards, friends and family.

I am thinking of radiating my rib.....it is hard to make medical decisions when your cancer is rare and there is no definite path to follow.

I miss family and friends as you do this time of year.   Cancer sucks :) and so do other horrible diseases.

I will let you know when the you tube channel is up.  I need a technology class!!!!  I will get there :)

Lots of love and health this holiday season.   I am sorry not to post everyday.   I am still here and going strong!     Xoxoxo

Update Amy

Good evening.   I am going to start on the 12th ......SBRT radiation to my rib for 2 weeks.   I am well enough and always hoping for the best.   I am working, and living well.   I will give a comprehensive update shortly!    Love and health.

How to Reinvent Your Career in Illness or Otherwise

I will be writing a series on this at http://www.theidealnetworker.com


Go there!   I am guest blogging there everyday for the next 90 days

Cancer Survivorship...Update Amy

I have decided not to post too much for the rest of this month.  I am applying for clinical trials etc.  Those of you that are reading to learn about cannabis oil ....this will not be scientific enough to really learn much...if I am accepted to one of the trials I will be discontinuing the oil to be true to the study.

I am doing well.  I wish that I had been more aggressive earlier...however my body needed a break. 

If there is a big change I will post here.  I am still fully functional, working, laughing, however I can see subtle changes in my physical self that are a bit worrisome.

I have to move quickly now before one day I wake up and things are different.  And you know how that goes...it happens in a second.

If you are new here there is a lot of info for you in over 600 posts...read them. oxoxoxoxoxo

Cancer Survivorship...Walt Grassl Radio Show Thursday at 11 am PST

Hi All.....I am on the best radio show tomorrow.   Go to http://www.waltgrassl.com

Sign on at 11 am PST to hear the show!   You can also listen at your convenience to the recorded show later.

I am OK.   Will give a big report tomorrow on the show!   Thanks! 

Cancer Survivorship...Off to Los Angeles

 I will be back here on Sunday,  Off to see docs, business, and all sorts of other stuff :).   If you need info on negotiating a medical bill and live in California please feel free to e mail me at amyreg@aol.com.   The reason I do not allow comments on this blog is because in the past people have left some crazy messages either promoting their product, cause, etc. 

Next week starts a business blog where I will allow comments.  I will chat on Sunday!   Enjoy!  And yes...off to a a very reputable Cannabis store as well.  So much to do and never enough time!

Cancer Survivorship....Day 3 ...Cannabis Oil ...I am Angry

Hello Folks.  I am angry and here is why.  As stated earlier I am 57 years young.  I have worked and been a US Citizen my entire life.  I have had cancer since 2001.  I struggled, rejoiced, facilitated a rare cancer support group...I helped thousands of people survive cancer in a proud, dignified manner.  I do not drink, I exercise and I am not a drug addict in any way shape or form.  I take Advil for headaches...that is it.  I am not depressed...I laugh...work...exercise...have wonderful family, friends, and dog.  

And yet in my pursuit of medical cannabis oil every step of the way the powers that be... make you/me feel like some second class citizen and drug addict....and yet...

You are the same person that drinks alcohol every single day ...wine, beer, martini...or whatever and then you get in your car and drive without a thought.  You are the person that has a prescription drug cabinet in your bathroom filled with pain medications prescribed by your so called doctor that you also drive your car while taking and if you miss one dose, you start to go crazy.  You are an addict.

You are the person that that has not a clue how medical marijuana can make a person on chemo hungry, relieve pain and possibly control tumor growth.  And you just lit your cigarette....you idiot.  Or maybe you are just perfect, never did a thing wrong, and never had an illness of any kind...your time will come. 

And then you might be me...trying to survive, stay alive, be myself in a society that says if I want medical marijuana with very real medicinal properties...that you will make me look like some sort of criminal to want to buy it in a reputable place where I am treated with dignity...like where you buy your drugs...a licensed pharmacy out in public....or let's make it fun to do ..like the local bar where you drink everyday, drive, and you think that is OK.  Get my point?   And then there is the money component of all of this...next post.

Cancer Survivorship....Canabis Oil day 2

I will not be trying this until tomorrow...Sunday...I live in a state where this is 100% legal.  I got my card the other day however within the city I live in you can only buy it if it is delivered.  I will not buy something like this without being able to go into a store and discuss it with someone.  yes...I have done a ton of research however I want to discuss this with someone my age in person that has been doing this for many years...

I found that store....I have to travel a couple of hours to get there however I feel it is worth it.

Cannabis is very different than smoking a joint....it is a very sticky substance.

1.  They can make capsules for you or you can drop it on your tongue...

2.  You have to make sure that it has certain properties

3.  You have to make sure that it is pesticide free....lab tested

4.  You have to build up a tolerance...my first dose will be a drop...

There needs to be a legalization of this for real.....why?  More later today in next post...Can not believe that I have to drive hours to have a decent conversation with someone about this.  ugh!

Cancer Survivorship....Cannabis Oil...Day 1

Hello folks.  It my intention to document this journey regarding me using cannabis oil in cancer survivorship. 

For new folks here.  I am 57 years old...female :).  I have had about 20 major surgeries for metastatic retroperitoneal leiomyosarcoma...an extremely rare cancer.  50% of us are dead within 5 years.  I have been doing this since 2001 :). 

I currently have disease in my liver, on my pancreas, my rib etc.  I have minimal pain and my body still works. :)  Yeah!

I have made this decision to try cannabis because I have been reading so much about it and have nothing to loose.  At some point I will be dripping oil at the same time as my new chemo.

I am telling you all about it because I can :) and do not mind.  I need to say a few things here so no one sues me at any time.  So here goes.  The legal release....

1.  I am telling no one to do this with me...no one ...not one person.
2.  I am not saying in any way, shape or form that cannabis cures cancer...although that would be nice.  And if my tumors melt away I will :).

3.  I am documenting my journey for entertainment purposes only.

4.  I am released from all liability should anyone copy what I do and they hurt themselves.  I did not recommend that anyone do what I am doing.  I am doing this only for me and just informing others regarding my process and opinion.    I will be picking up oil tomorrow and taking my first drop :)  ..Yeah!  Stay tuned for posts on Saturday.  Thanks!

Cancer Survivorship...I am Laughing at Cancer

I am laughing at you today...maybe someday you will kill me and maybe someday you will not.  I am laughing at you.

I am 57 years young and I have cancer all over the place...however you would never know that and my body functions for the most part like a "normal" person right now and I am fighting to save it.

I am going to try cannabis oil shortly with some other stuff that I am doing....so yesterday I went to the legal cannabis store and I was wondering if I just entered a time warp or a "Saturday Night Live" episode.

I walk in and a young man comes out with long hair down to his knees ...mid to late 20's I imagine....I told him in 5 years he will be incredibly wealthy, with short hair and driving either a BMW or Mercedes!   He laughed and knew it was going to be true.

I grew up in the 70's....hippies changing the world...and look what we did. :)  I think that I am in the wrong business!   LOL....Maybe we should all go to Colorado!

I will fill you in on how this goes....2 new posts under this one....xoxoxo

How To Save a Life...The Power of ONE

Recently I had the honor of attending the Rare Patient Advocate Summit put together by Global Genes.  I could write a book about just this however let me tell you what I learned.

Never piss off a parent when it comes to their kids.  I understand this as a parent however my heart and soul goes out to these parents in battling rare diseases that no medical professional can even diagnose!

I sat and listened to parent stories of having these incredible children that no one can help....and how they found help most times too late....and then one person started a group and then they became hundreds and then thousands trying to find a cure before another child dies.  Powerful people.

The keys I took away....

1.   The FDA is not the enemy...learn how to work it...go into the system and work it....and then change it from the inside...they are ready for change.  The government is not that big :)...if you learn how to work and stop complaining.   Complainers are negative and accomplish nothing.  Go away until you areready to make change.

2.  Make an incredible researcher your friend.  Find a doctor friend and make her or him love your disease enough to research it and cure it ...one step at a time. 

There is more coming today....come back.

Cancer Survivorship.....To my Family etc Live in Joy

I am leaving this open to all however you may know that I am writing to you and only you...and you and you.

I have spent a good part of these cancer years recently wandering quite a bit.  We, You, I have lived so many places...on purpose and much of it has been wonderful.  I have met and made so many wonderful friends.  I like to wander lately.

Life is built much of the time on fear....fear of living and not living enough...fear of dying too soon and then living too long.  Fear of failure and fear of success...fear of having not enough money and even having too much!    Fear of being alone and fear of being in a room with so many people and still feeling alone.  Fear of never getting it right and when you do...it was not what you expected at all.

There is no reason to ever live in fear and yet so many of us do.  I look back on 13 years of various surgeries, chemo, and I can not believe it.  I can not believe that I actually did all of that...last year I had 4 major surgeries.  I think I hit 20 in all of these years.  I am not sure how much more traditional stuff I feel like doing and yet I do not feel that I am dying...even though I might be.  I do not think that I am  :).

So here comes the legal cannabis oil and much other alternative stuff..I will let you know how it all goes.

I know not to live in fear of much of anything...I have already done what many people would go crazy over and I am still standing and then some...all I have to do is fight for my life.  I can do that.

Do not let your life be driven by fear...drive it by joy...let both sad and happy emotions feed your soul.  Do not hold back in love, work, and all else.  And I know you might not understand this until too much time has passed.  Keep going.  Cancer...it sucks.  Open up...time is running out!

Cancer Survivorship...Hello and Update Amy

I must apologize for not posting for the longest time.  Beginning next week I will have a you tube channel with lots of important info for you to advocate for yourself in the medical world.

I will send a note when it is officially up and running.   If you want to see who I was and am about 9 years ago...go to healthination.com and click on rare cancer.  You will see me.  I did this for them about 4 years into this over 13 year battle.....about 2005 or so.

See you on Youtube next week. :)

I am OK...trying to figure out my next move!  xoxo

The Concept of Waiting

Did it ever occur to you that you may be always waiting?   You are waiting to live...waiting to die ..,,waiting to fail and to succeed....waiting to have money and then to spend it.  Waiting for the right house... The right partner....you are always waiting!

What are you waiting for?  In cancer and all illness really life becomes magnified usually.   If you were happy you find a way to be happier....if you are sad, disappointed, etc...you will become more so.

Are you waiting in fear?   What are you afraid of?  Are in you in fear of achieving the things above?  Or  not?

Are you stuck in illness not knowing how to proceed?  Are you having problems moving forward and making plans?

We will talk about that.

Cancer Survivorship...Back To Living

Hi Folks...I admit it...me Ms Sunshine....I have been in a gray place...I can not say dark...because that is different...I just have not been able to stop thinking about dying ...which is so unlike me.

Next month is the 13 year anniversary of my very first surgery for my very first tumor ....on Sept 26th, 2001.  My world changed forever...however...I had no idea of about 18  major surgeries,  all over my body...chemo 5 times and everything else that this journey has brought me.  You would have to read the other 600 posts and that is barely the surface.

I am now taking pills called Temodar and doing some holistic stuff....we shall see.

Today I will no longer think about dying.  I will think about living only .....everyday.  Join me.  Join me in moving forward for another 13 years or more :). 

More writing to come...just had to re group and change the way that I have been thinking.  xoxoxo

Cancer Survivorship.....Update Amy

I am currently working on my own treatment plan for the near future.   It has been difficult to do this for myself :)...much easier to do for others.   I will be back in a few days to discuss the process and how I came to a particular decision.

It was a mix of the science of sarcoma, my emotions, and thinking about quality of life.   You might be surprised.

Come back on Wednesday.   Or read over 600 posts before then.  Thanks!

Cancer Survivorship...Mental Illness

The difference between a mentally ill person and a physically ill person is the ability to ask for and get help.

A physically ill  person knows how and when to ask for help.  A mentally ill person does not.  And yet this person may need it the most.

Learn the signs of mental illness and learn how you can help.  Maybe you can save a life today. 

Cancer Survivorship...How to Pick a Medical Insurance Plan...Medicare...etc

1.   The first general thought is to always pick a plan that you can afford ...not only the premium...Can you afford the plan should you become very ill and not able to work.  Is the coverage enough if you are ill?

I always tell people to look at the plan when you are well and then if you are ill...how...what does it cover you ...exactly????   Will you go broke if you become ill due to out of pocket bills???

2.  Even in Medicare Supplemental plans there is HMO and PPO.   HMO means that you need permission to go everywhere for anything.   PPO means that you can go where you want as long as you make sure that it is still in Network......that they accept your plan.....always make sure they accept your plan if you choose PPO supplements.

Make sure they all accept it...the doctor....pathology...radiology....everywhere...no surprise huge bills. 

The drug plan ....make sure the plan you pick covers all of your drugs.   Make sure you can get drugs in the pharmacy as well as by mail ....mail can be cheaper.


Know that with the Affordable Care Act ....it is not accepted everywhere..Before you do the Affordable care Act..know where the care is approved and given so you are not surprised.  

Many doctors no longer accept Medicare ....my surgeon does not...the list is growing everyday because of the tiny amount of money doctors are paid to care for you. 
 

If you are contemplating going on your employers group plan ...know the rules of what happens when you leave that job concerning your health insurance.   How long do you have it upon leaving...how much is cobra...would you be able to register with Affordable Care or afford a private plan upon leaving?

My advice is always to find a reputable agent that has been selling insurance for over 5 years.  They are a certified broker for many carriers.  They are knowledgeable and will take the time to spend with you...to explain things...how they work and earn your business.   The broker has an office and employs an assistant two.   They can give you references.

Do not buy over the phone....phone only people earn commission etc and that is what they are looking for...just the bottom line...they also are not knowledgeable enough to serve you properly.   Do not buy from a friend or relative just "because"...your life ....your health...advocate and take of yourself always.

Cancer Survivorship... Insurance Billing

My new case is all about insurance billing.  Nothing in this case was billed to the right place.

1.  Make sure every medical institution knows which medical insurance company should be billed first .....especially if you have more than one carrier.

2.  Medicare is first.   Your other insurance is second.  Make sure they know.  Do not let bills pile up.

3.  Make sure your medicine/drug bills are also going to the right place.

Do not assume that billing is going to the right place.  Follow up with phone calls.  If you get conflicting stories and misinformation get a supervisor.   Record dates, times, names of people that you spoke with and the basic content of the conversation.   It is your bills....your money...your health...maybe your credit score.  Be your best advocate and find help if you need it!!

The True Art of Living Day by Day

I think I am finally getting it...understanding it and doing it.  Like most people I discovered it way too late.  The value not only of time in general.

The value of how you spend it because of how you feel on the inside.  Those people that make your heart and soul just sizzle.  Doing a task by yourself or with others because it is so rewarding that you just can not stop doing it.  The art of being by yourself and loving it ...not needing another soul present to enjoy the moment.  Being so at peace with yourself that the thought of leaving this earth is unbearable.

I have discovered this all too late.  The thought of leaving this earth before I am ready.  It is unbearable.  I admit it.  And my friends know it...my other friends in the fight and they admit it as well.  They are just not telling you.   They are the unspoken words of fighting for your life in any sense or illness.

The true art of living day by day...I can do it.  Only if I get to stay here.  I really want to stay here.  The rest I can do myself...well ...and with others :). xo

More on How You Spend Your Time...

I am in the middle of  working, figuring out the best treatment plans for myself, and seeing people that I love before I start more medical stuff.  Sometimes it all seems so insane. 

The art of reminiscing without making it sad for someone in my position is ...an art.  I think that I am starting to understand it.    I will post more about this later today....I have to get ready for the day!!!!   xoxo  Are You?

Cancer Survivorship...My Anniversary or Cancerversary

My 13 year anniversary with cancer is next month....hard to believe....especially now with a little life threatening disease in very odd places.

Last weekend was amazing for me.   I spoke for a great group...made people smile and laugh.  Last weekend I was not a person with cancer.  Last weekend I was entertaining and helping fabulous people.

I have so many new clients that I do not know what to do....Every second I have will have to be planned.  I am loving my life....which makes cancer all the more threatening.  I hate you cancer.

I celebrate life everyday by just being here.   Everyday....every moment even when times were not so good....I wanted to be here.

So I would say to you on this anniversary....if there is something in your life that you need to change...do it...no fear...so what if you fail....it is just a lesson in success...keep going....keep going...until you can not.


This is what I do.   I love being here....why don't you???   xoxoxoxoxo

This Weekend and next week.....I do not have Cancer :)

This weekend...Friday morning I am on Ron Siegel Radio from 8 to 9 am.  Saturday I am at the Naked Truth Workshop presenting with wonderful speakers in Santa Clarita.

Sunday I am seeing clients regarding patient advocacy.  I wish I could stop time.  And make believe that stage 4 cancer did not exist in my body....but it does.

So I will enjoy the next few days.  I will get ready for scans on August 4th ...and a second opinion at UCLA. 

Next post is Monday.   Let's have a great weekend!

Cancer Survivorship...How to Learn a Coping Skill

As stated in a previous post...coping can be a learned skill if you are willing.  If you are mentally ill that is different and you should seek professional care however if you are just at a loss and need help here are some tips and they may seem simple and silly however they work....I have been using these techniques and teaching others for over 10 years.

You are angry, petrified, and have no idea what to do.  You are either just diagnosed for the first time or your disease has grown and you had no idea. 

1.   Get a paper ..pen...Ipad...etc..whatever and make a list of what you are feeling..please do it in list form.

2.  Your second list will be what you need to do for yourself now.  Also keep to list form. 

Examples are on the emotional list...

1.   I need to find a way to cope with my worrying and crying a good part of the day...how can I help myself?  What could I be doing differently?  Am I alone too much of the day?  How could I remedy that?   What group could I join or activity could I do? 

As I said earlier in my own care I began conga drumming at the local cancer support center in 2002.   It was amazing.  I also joined an in person support group and a couple of those people I still know today!

Examples on the to do list....

1.   I need to meet other folks with a similar situation to my own...how do I do that?   I need to research my illness.  I need to organize my paper work and finances.  Need to review my health insurance ...etc

Get an accountability partner that you talk to everyday...this is not someone that you complain too...this is someone that reviews your "to do" list with you and helps you to accomplish your goals.

My goal for you is that you the patient, do as much for yourself as possible and then be able to ask for help when you need it.  The sense of control and accomplishment will help you help yourself and others as well.

Happy Sunday!   Step up...step out and get out of your head!

Cancer Survivorship,,,The Best Advice that I Will Ever Give on Living Well

Next month is my 13 year anniversary of my very first diagnosis in August of 2001.  In August, I actually did not know that it was cancer yet.  I just knew that I had a large tumor in the back of my pelvic area...a retroperitoneal mass.  It was after the surgery and the pathology that I knew.  I cried for days.   I was 44 years young and had 2 daughters just 11 years young.  I had just gotten divorced and bought a house.  I cried for days.   Then I picked myself up and started looking for help.

I had no idea that cancer would be this huge in my life.  Here is my best advice.

1.  Upon diagnosis you have no idea if you will live or die from this.  I would assume living...even in the worst case scenario.  Thinking that you will live will really help you to LIVE.

2.  After the initial shock wears off begin making sure that you have the best care for your particular cancer.  Make sure that your oncologist has seen many, many, many, people like you.  And research that doctor.

3.  Gather proper support for yourself..... Family, friends, and possibly a cancer support community where services are free.  Anyone complaining and/or crying more than you, please tell them to go away and come back when you are better...or they are better.  Now is the time for wonderful people around you.

4.  Develop a very thick skin.  People will say and do stupid things around you now.  It is ok...they are freaking out as well.   Hug a lot when you can.  Hugs are amazing.  People you love may leave you at this time.  Let them go and find new people.  They will come. I promise.

5. Get your finances and your paperwork in order.  Make sure that you understand all of your insurances.

6.  Make sure that you have designated emergency people...people that you can call anytime day or night for help.

More in the next post....most important to not forget to laugh ....watch funny movies...pick up a new hobby....I started conga drumming.  Every time I banged that drum, I was killing a tumor. :)

Cancer Survivorship..The Truth About Coping Skills

This post is all about the truth in learning coping skills. It is not what you think or how you perceive it. Over the years people have said things like this to me... I am not you...I am not strong like you...I do not think like you. I can not do what you do. I was not born that way.

 As a person that has facilitated support groups and just helped lots of people develop coping skills I say bullshit to that and here is why. 1. People that learn great coping skills still have bouts of sadness. They cry. They laugh. They grieve. They play....they have joy. They know that it is OK to show every emotion and still make life go on. Being strong does not mean that you do not show all of your emotions. I cry...I am scared... It is what I do while experiencing those emotions that count. 2. This whole happy thing all of the time is silly. Happy is not something that you will arrive at one day. Happy comes from deep within your soul and your mind and helps you learn how to cope. I am talking about the inside happy...not the outside :).. 3. All coping skills can be LEARNED. That is what we do in support group. We teach people coping skills. I have seen this time and time again. People from all walks of life newly diagnosed come in crazy ...and I mean crazy. Then the process begins of calming them down and teaching them very defined skills. And little by little I have had the extreme honor of watching this metamorphosis ....this once insane person becomes this amazing, strong patient advocate for themselves and others. It does not work for everyone.

Some people prefer to stay angry and sad rather than strong and capable. Which person will you be? I am strong because I choose to be. It does not mean that I am a rock. I still need help from time to time...I am just like you...I just learned skills to carry on in a great way. Step up...step out...get out of your head and take care of yourself :). I believe that I have other posts in here on coping...after 600 posts I do not know where it is! xoxo

Cancer Survivorship.... Making a Plan...Adapt, Change and Cope

I know many people that have cancer all over the place like me and we are concentrating on living and making a plan. Making a plan gives you a sense of control over the uncontrollable....and it makes me laugh as well. I have been in this position before and next month is my 13 year anniversary of doing this crap. I know I will die from this someday. Can I get another 13 years out of this? I do not know. I am trying. My thoughts are like a pendulum. They swing back and forth fighting the negatives and focusing on the positives. The battle rages in my heart, soul, and mind. The positive is winning today. It will win tomorrow as well. It is not medical that is the most difficult to plan. I know how to do that without thinking too much anymore. It is life in general that is difficult to plan when you want to do A and your body says ..."no...you are doing B!"...lol... and you do not like "B" at all. :) TO "B" or not to "B".... And then sometimes there is a compromise and "C" comes along and it is not as bad....so "C" it is. People have said...."At least you have a plan!" Silly...there never really is a real plan...there is only and the day ....waiting to see if A,B, or C is coming along and then you just do the best that you can...a plan....LOL...being able to adapt....change...and then cope...is the real plan!!!!! Speak up...speak out ...and get out of your head!

Cancer Survivorship...Your Medical Records

When was the last time that you looked at your own medical records???    You should always have a copy of your own records especially if you are healthy.  Here is why.

1.   Underwriting for any kind of insurance.  This is includes...medical....life...disability.  Why?  Your records and how they are worded determines the price that you will pay for the insurance...if you qualify.  And you may not think that certain issues will affect price however they do.  Here are a couple of examples...

a.   Do you smoke?   We all know how stupid it is to smoke at this point however if you smoke and have asthma it is an automatic decline for long term care insurance...disability...life.

b.  Are you grossly over weight by insurance standards?   If you are you will pay quite a bit more and be restricted in what you may purchase for all insurances even if that is your only issue.   I know you have a right to look exactly how you look however being grossly over weight is a true health hazard.

2.  Is there something in your records that should not be there or is written incorrectly?   This happens often as well and can influence everything.   An Example...Years ago I had a client applying for long term care insurance and his records stated that he had issues with his arteries and he was a smoker so this was crucial.

He swore that it was not true and he had no idea why the doctor wrote this.   I had him see the doctor and go a for test to prove that is was written incorrectly. We then were able to get him his coverage of which he is using today. In today's times you will see your doctor for approximately for 20 minutes at your appointment. She or he is not the navigator of every aspect of your care....you are. The doctor is in a rush to see as many patients as possible within a specified time. They would like to practice medicine differently however most will tell you that times have changed in that regard. Speak up and out of your comfot zone...this is your life!

Cancer Survivorship....Medicare Info...Important!

Very important....Medicare only pays for in full 20 days of skilled care nursing unless you are doing rehab.  After that they pay a small percentage up to 100 days only in skilled care nursing.  They pay for no home health care having to do with the 6 activities of daily living.   Those are eating, bathing, mobility, dressing, toileting, and continence.   Medicare does not pay for any long term care services that you would need to live in the home.  This includes dementia as well.

Many people are taking care of themselves or others and think they are covered and then shocked to find out that they are not.....here is the other shocker that Medicare does not tell you....if you enter the hospital .....you must stay 3 whole days to get the skilled care nursing benefit of the 20!days in full!!!!

Stay there the three days!!!!!   Learn the rules of your healthcare policy and then prepare.....way before anything happens and you loose thousands of dollars...and more!

Managing Your Care All By Yourself

I always say you are the President of your care.  Your doctors are the cabinet and thank God there is no Congress :)...or you might die due to lack of decision making and too much fighting!

Lately I feel like just the President of my care...My cabinet does not have much to say and a Congress would still be a waste of time.   I need some new players in my cabinet I believe...happens often in the land of sarcoma.   They want you to go one way and you want to go another. 

So here I go after 13 years off to a second  and third opinion regarding the path that I will choose to take.

Just once I wish that I had a Vice President!  :) My scar is not healing well and I miss swimming...The gym is not really for me.  

The days pass quickly and sometimes I get a lot done and others I find myself just wanting to do something mindless....and I do :).   I will be a guest on a radio show on the 25th.  I will post more on that in a separate post.  It will be fun and educational.

I wish that I could pack a little back pack and fly all over the US...one day :)

Cancer Survivorship...2009/2010/2011

Please go back to the beginning and read old posts.....there is a lot of info there as well.   Unfortunately in cancer... Not much has changed!!!!

Cancer Survivorship...More On Time and How You Spend It

With every medical issue comes the evaluation of your time and how you spend it....and how not to waste it without making yourself a little crazy because as we all know every moment can not be precious or well spent.

If you are a regular reader you have seen the prior post on spending time with people that matter in your life and not those that suck the life out of you.  I have already got that handled.

How do you be normal in time spent knowing that it might be limited by more illness? How do spend your healthy time?   And how do you spend your not so healthy time?

I do realize that I have spent way too much time on social media. I do realize that I have spent too much time contemplating my fate...both good and bad.  I have also spent too much time just being frozen by my circumstances.  I have no time to be frozen.  I was not even worrying...I was just frozen.

So enough of all of that.  Whatever my norm is for this go round ....it is time for me to find it....however long it will last.

It is easy to find meaningful reason in life when you are healthy.  It is not so easy when the enemy called cancer is stalking you....one body part at a time. 

I will open a you tube show next week on patient advocacy.  I will let you know when it is up.  I am not going anywhere for a long time.  And I am not going quietly...at all. :)

Cancer Survivorship...Cancer and Social Media

Social media is not the same as seeing someone in person or even talking to them on the phone.   It definitely has its wonderful place in communicating with others however it is not personal and does not replace real human contact.  Here are some tips for both the ill person and those wanting to check in with that person .

For the person that is not feeling well...

1.   You know I am blunt and it has helped me over these 13 years.  I feel better about myself when I am not well if I speak up...I have said to people... Call me...come see me...if I don't call you back right away please call me again...I am not 100 per  cent and I may have forgotten. Do not give up on me so fast.  

2. Give your friends and family a break...they may not know what to do.  Give them something to do...Can you bring me some chicken soup when you come visit on Friday?  Can you help me do my laundry...ask and then just say thanks !

3.  The people in your life that do not want to see you or just like your photos on Facebook...you have to let them go...I am not talking about just Facebook friends...I am talking about people that have been in your life that you know personally...possibly your entire life... Let them go if they think that social media is a personal form of communication.  It is not.

4. Lastly...give yourself a break.  If you can seek out people in person...there is no substitute for a hug and laugh with lovely people around you.

Checking In With a Person that Is Not Well

1.  Pick up the phone and Call....if they do not respond try again another time or call someone that knows what is going on.  It is not the same as an email or like on Facebook.  There really is no excuse  .....the only excuse is that you have chosen to not be in that person's life and that is OK as well.

2.  You can say call me if you need me and that is fine...just keep checking in.  I love friends and family that are honest with me...once a friend of mine let me know what she would do (errands etc) and also let me know that she would never come to the hospital..ever...it gave her nightmares and I appreciated her honesty.

Spontaneity is wonderful .....I just happen to be in the neighborhood ....can I come see you or do you need anything from the store?

3.  Social Media is great for business, researching, asking questions, gathering information, making new acquaintances ...understand at the end of the day...you have not shaken a hand...hugged anyone  or laughed with anyone except yourself!  If you can get out if the house.

If you can not go alone...can someone pick you up?   If you have no place to go ...perhaps a cancer support center where they have free classes and support groups.  I used to go and now I teach there.

Cancer is not about retreat....it is about moving forward in,life despite terrible circumstances...speak up...speak out... Get out of your head and your house.

Cancer Survivorship...The Art of Procrastination..and Treatment Plans

I have been stuck...I admit it and oh so rare for me.  I did just have another major surgery 3 weeks ago however time melts away quickly and mine for sure is quite limited. Maybe that is why I wasted some of it.  I had to know that I could :).   No more.  I really can't.

Maybe I did not really waste it.  I have been doing much thinking about so many critical plans and trying to make the right choices.  There are many choices and no guarantee on any of them working.

I am not cancer free at the moment and the likelihood of that happening again is slim.  I know not how to keep this stuff from growing anymore.   Is it time to go crazy alternative, meditate, and pray...or is it time to declare war on my body with a liver ablation, radiation, chemo, or surgery.   I see the doc next week to discuss.

I am having trouble finding me.....not in the way that you think...I am quite confident in who I am...I just can not figure out how to fit in my own life anymore...maybe because I do not like my life at the moment.  After 13 years this whole cancer thing is getting old.   I want to do something else!

I believe doing something crazy fun is in order.  Before the next medical adventure!  I have been receiving requests for a lot of info on advocacy.   I will get back to it!   Happy 4th.

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.

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...

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

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.

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.

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  

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

Mindy Darst

This series on work is interrupted for just one post.  The LMS world lost a hero in Mindy Darst.  She went and received an experimental injection that melted away her tumors not knowing if it would kill her at that moment.  She ended up in intensive care however for a time it actually did melt everything away.

And then I am not sure what happened...I guess things grew back quickly because the experimental injection was a bit ago.

She risked her life for all of us ...to cure Leiomyosarcoma.  There are no words to express how I feel about what you did.  Thank You Mindy and I am sorry that I will not ever meet you here are Earth.

Donating money to cure cancer?   Do  not donate blindly...cancer is big business...make sure your money counts for something big...like actually....maybe saving a life...not paying someone's huge salary or sending them on a vacation.

Mindy is one of the most fearless people that I will ever know.   

Cancer Survivorship....Work/Job ..Post 3

An important aside to all of this regarding working...

One of my first professional advocate cases was not about cancer.  It was about a woman that had many physical issues for many years and it was time for her to stop working.  She just did not have the physical abilities any longer to perform her job.

I was hired to help her get her social security income. She is in her 50's like me.  I did not realize until I began putting together her case that she worked in a fabulous place with wonderful co workers.  They loved her so much that they actually performed much of her job for her so that she could keep coming to work.  They did it for years.

Due to this is was much more difficult to put together her case.  She seemed way too healthy for too long.  We were ultimately successful however here are a few things to consider in your work.

1.  I know working is psychologically beneficial as well.  Being around people, having your mind engaged is important in healing and living with any illness.  Money is as well :). 

2.  If you really can no longer perform your job...do not stop working alone.  When I get to this section I will go into more detail however it is not a good idea to have others do your work for you if you can not.  It will hurt you in the long run when applying for your  benefits when you really need them.

3.  Keep a diary or what I call a "health log".   Write in it everyday...log days and times....what exactly are your job duties and what can you still do...and not?  Keep detailed records.  

4.  Detailed records will help you for 2 reasons....if your employer is trying to get rid of you ...you have a log and proof of exactly is going on...names dates etc....if you want to collect benefits you have a detailed log as well....be prepared....it is your life.

Cancer Survivorship....Work..Your Job..post 2

Discussing number 1...read prior post as they will be in order...

You are going through chemo...radiation or had a surgery.  You are a full time employee and receive benefits from your company.

1.   Do you know exactly what they are and how they work?  Do you understand them?
2.  Have you visited or called your human resource person and have everything in writing connected to your employment?
3.  Do you know your rights as a full time employee?
4.  Do you have disability insurance?  Do you know how it works?
5.  Do you have an understanding of your health insurance?  How it works and what happens if you loose your job?

Answer these questions and come back for next post.  Thanks...I will actually add to this later today.