Thursday, December 26, 2013

Cancer Survivorship/Holiday Message

It is almost 2014 and that will bring me to almost 13 years of doing "This"...surviving cancer.  And it has occurred to me after all of these years that I can do better.  Please do better with me.  That is why I type here.  In typing over 500 posts that I hope you will read...I am so public about all of this because helping you helps me.  I learn more from all of you collectively than I can ever teach you.  Thank you from the bottom of my heart and soul.  I am alive today because of the info and support from all of you...plain and simple.

So let's talk about doing better in 2014. ....to be continued....







Wednesday, December 18, 2013

Cancer Survivorship 1

I am back....a little worse for the wear...:)..Coming soon....Thrivorship Network...because Cancer is not about Surviving...It is about Living!  The Ultimate resource for real issues in Cancer Thriving...Update on me next post....it complicated :).


Thursday, November 28, 2013

Thanksgiving 2013 ..Personal Message

I say this a lot because there are always new people reading...Please read old posts...there are over 500 of them.  I have been doing leiomyosarcoma for over 12 years now.  I have had over 15 major surgeries...most of them abdominal and much more.  I have been bald twice, had 2 chest ports, 2 stomach ports, a pic line, 2 lung tubes, and the list goes on.  To look at me you would never know.  I look like you....not a care in the world and totally healthy.

I have been thinking a lot about this year and I am doing something so uncharacteristic of me.  I am spending this Thanksgiving by myself...by choice.  I was invited a few places and I just decided to go to a movie and write all day.  I fear I must be a little coo coo over cancer right now..however I really think not and here is why.

Much of what you think about having cancer is true.  You do smell a few roses more...you miss special people in your life more that are gone or even still here and you do not see them.  You miss your self as well.  You miss your life before cancer...BC :)...Right now I am missing the functionality of my insides..although I did walk up 4 flights of steps yesterday ...yeah!  My digestive system is a work in progress.  I am learning.

Another thing that I have learned is to accept my feelings at any given moment.  It is OK to be happy, sad, reflective, joyous ...petrified about the future....I did not feel like being in a room this year no matter with who, after having so much physical stuff go on and having to talk about anything...at all...

I have decided to reflect, plan, and take my dog to the park...easy things that make me happy.  I have noticed that my friends do not do well when I am quiet...:)...they are used to the strong, crazy me,...I will allow them to keep that vision of me...it will be back.

I wish you all this holiday season...peace, health, joy and take the time to just reflect and be you and then move on.  Cancer sucks.  I can be grateful and still feel this way...:) xoxox  I am and I do.






Thursday, November 21, 2013

Navigating Cancer Survivorship..a talk with my Dog

I am almost 4 weeks out of lung surgery and 6 months out of a massive abdominal surgery.  It was time to have a talk with the source of all things wise and loving....my dog.  She told me her side of the story today ...here it is .  This is my daughter's dog...so I am the grandmother :).

Grandmother....

 (Sitting next to me...paw on my chest...the side operated on)  You will get better.  You have been in this situation before.  You know it.  I know that you are tired and all of this seems like a hamster wheel ( I get it cause I do not like hamsters either)....You have gotten off the wheel before and been fine for a very long, long time.  You have to have a little faith...or a lot of faith. :)

This is not the end ....just another bump in the road of survivorship.  I know even surviving all of these surgeries, etc is a lot from time to time...I am thankful that you have spent so much time with me right now...walking me...hugging me...feeding me...and playing!  I know that soon you will be back doing all of your regular stuff.  When your lung gets better, we can go running!  You will run! 

So as you tell all the people that you advocate for everyday...You have to keep going...even when you are worried about your next scans in December or maybe even your entire life.  Make the plan even though you may change it. 

I was not born yet however I know there was another time when you were so worried...around 2009...the hits just kept coming....and look what happened...It is now almost 2014!  Come on Grandmother...quit hugging me and get on with it!  :)  You have so much to do before the end of the year!  I love you and do I get a big bone for this???? 

Smart dog.....:)

Friday, November 15, 2013

That Moment in Healing

It took way longer than I thought...way too long...however I am at that moment where I have been so many times before.  After now over 15 /20 surgeries...I realize yet again that I am going to be ok for awhile...the lung tube is out ...everyday is a little better..and I must find that new normal for myself...again..

I am tired...After Thanksgiving I will go back to work and continue to reinvent myself.  And I think about just how long I get to do my "thing"...until my next medical adventure.  I want no more medical adventures.  I am tired in that way. :)

I am supposed to feel hopeful, excited, motivated...today I am just tired...a little grateful...and I just wonder about so many things.

Tomorrow I will wake up and start planning..like I have done so many times before...no interruptions please. I am have so much that I would like to do.

Happy weekend.  Here I go ...again...lol...scans in a few weeks.  They will be ok for now ...right?!!!!

Many of you ask me why that you can not comment...people have tried to sell so many things here ...I just do not want to police it...feel free to e mail me.  Thanks!  Lots of new stuff coming shortly....

Wednesday, November 13, 2013

More on Long Term Disease/The ASAP List

Upon recovery from surgery...real recovery..here is a list to help you and please add your own items...and thoughts...

1. Your body has just been handled in an awful way..your insides have been invaded...and it was not for a baby :).   It was to fix something not working, and/or to save your life.  You must reclaim your body in a healthy way.  You  have to make it yours again. That is in your heart and your mind.

2.  Take minute when your spirits are up to really think about what you have just been through and how you see yourself in the next few months.  Get yourself grounded ...have a healthy cry and begin to move forward.

3.  Get a massage...get your body touched in a healthy way...deep breathe...a little meditation.  I lways get a great massage when I get the doctor ok.

4.  Do something new.  In order for life to go on ...you have to do one new thing after every surgery...you have to make your life new.  It is a marker...a celebration that you are still here!

5.  This is a hard one...don't look for people to find you...just like in life you still have to go out and find them...do not sit around wondering why people are not paying attention to you...pay attention to yourself and them...make a life if you can ...if you are able.  Go out and explore!

6.  You can have a 2 minute pity party everyday...get it out...let it go....and keep going.....it is ok to acknowledge your misfortune..you have to..then you have roll up your sleeves and get on with it...and I know sometimes things may never get better...I have lost many friends over these years ...that is for another post.

Your life will never be what you think...ever..it will be way better and worse.  In my over 500 posts this just seems appropriate today...I was able to take my first shower in 2 weeks after the lung tube removal...oh it was heaven....and I had a cup of my favorite coffee ...Thanks to All Gods...I am a happy person today and all it took was a shower and a cup of Joe :)  Please join me on my next journey.  I am getting ready :)  12 years ...so many surgeries etc.. I am not done.


Saturday, November 9, 2013

How I Really Feel About Long Term Cancer

It is hard to believe that I have been doing this over 12 years.  And I say this a lot because you may be reading for the first time and not know where I am coming from.  I have had 12 abdominal surgeries ...at least...2 arm pit surgeries, one lung surgery, about 4 chemos, a little pelvic radiation, 2 chest ports, 2 stomach ports, 2 chest tubes, one lung collapse, a pic line, many blood transfusions, and the list goes on.  To see me dressed and out and about...you would never know.

I still have a chest tube which I believe will be out by Tuesday.  I still walk miles...work, etc.   I have become an advocate for others..and I still love being alive.  So let's talk...about the real issues here of long term cancer or any illness.

A few people get very quiet around me every so often and very gently ask me, "How do you do this all of these years...how do you really do this"...Have all of these medical procedures ...etc and still be sane.  So here is my list...I may be a bit repetitive as I have been typing here a long time however I hope this list helps you in some way...it is an honest list of "how to".

1.  Part 1 ...Emotions...
    a.  I let myself experience them.  I must say that I may have been depressed once..part of that is genetic I believe.  Nothing wrong with crying, screaming, conga drumming, laughing, being silent, contemplating, planning for everything..including death and life...I am allowed to feel anything that I want.

    b. I don't have to be that idiotic "positive" thing all of the time.  Smiling and making believe everything is ok...when it is not contributes to poor health.  The idea is to plan, be ready for almost anything...treat your self well...and be that positive thing when you really mean it.  I understand putting a front on for family, some friends, etc...if you are positive all of the time for everyone please consider therapy. 

  3.  I have made a conscious effort to allow people to come and go in and out of my life as they choose and not judge them.  This has been a difficult task however I think that I am great with this now.  Whether I let them back in though is also a choice and that is difficult.  I have had so many surgeries etc and friends, family are often not there for the long haul.  They get used to you having medical issues and just assume that you get better and not need any help.  They just do not want to be around you anymore because they are done with illness on any level.  They say ,"Call me if you need anything", knowing that I will never call. 

Most people would rather donate to a cause...walk a few miles, rather than really help a sick person and part of me gets that.  The thing is you will be ill someday and then you will understand.  There are very special moments in life and many of those are unexpected.  You might miss a few.

That is why planning for your own care as an advocate for yourself is so very, very important.  It also makes you feel good about your self and gives you a sense of control ....when your body functions are "out of control".

The idea of keeping your emotions in check is controlling the things that you can and finding ways to make yourself  feel good about being alive everyday no matter how small the reason...I wake up everyday most of the time and know that I will enjoy something today...even if it is just my coffee and a long walk.  I know that I can make good things happen in the midst of a little chaos.  More in the next post.

Thursday, November 7, 2013

Invisible

I still have this lung tube and cylinder/cup hanging on my side...maybe tomorrow????  Crap...anyway...I clean up well when I have make up and proper clothes on.  I do not look my 56 years.  I only say this because when I do not clean up properly due to medical issues I find my interactions with people to be so very different.  I feel like I am my own psychology project.

In general I talk to everyone...on grocery lines..in elevators..on purpose.  I like to see if I can get someone's head out of their phones.  Also ...ya just never know where you might meet a wonderful person.

My friend picked me up today to run errands.  I can not drive with this tube.  She has walking issues due to a bad knee and I have this tube.  I wore a jeans, little make up, at least my tube is blue :)... little fashion statement.  We were quite the pair!

May I say that even the homeless person representative in front of Whole Foods did not ask me for money!  Not a dime!  OMG....:)   Later I went to the juice place that just opened and they gave me my drink for free. 

And then there is the other side....the side of folks that gives you no eye contact standing next to you on line.  The person that let the elevator door close as I was walking to it.  The side walking into Bed, Bath and Beyond...the clerk saying..."what are you looking for here today?"  Not "Can I help You?". 

Every person with a tube...in a wheelchair, etc is not going to win the Special Olympics and be honored...be nice and kind to everyone.  It is the little things in life.

When I was is my 20's I was one of the first women to sell BMWs and Porsche here in Los Angeles. I loved my job, made a lot of money for my age and had a blast.  One day a young blonde girl dressed in rags came in to my store and no one walked up to her ...except me.  I spent an hour with her discussing a red BMW 325i.  They had just come out.  She thanked me for my time and set another appointment for the following day.

My co workers said that I was crazy to spend the time and she was not real. I thought she deserved my time and respect.  They judged her solely on her looks.  The next day she came back and bought a $30,000 car.  No negotiations...she said, "My father had just passed and left me a small fortune.  I had been in 2 other dealerships and not one person approached me.  You were the only one.  Thanks so much!  I hope you made a lot of money today!   I did! 

My biggest pleasure was smiling at all the co workers..ha ha ha.  Never judge a book by just its cover.  You may miss something!




Wednesday, November 6, 2013

Kids and Dealing with a Parent with Long Term Cancer

I have been able to see my daughters graduate grade school, middle school, high school, college, get jobs...get their own apartments, etc.  And they are fabulous people. I love them of course.  And not only have I struggled with cancer all of these years ...their Dad passed away almost 7 years ago of a heart attack and he struggled with diabetes....quite a pair...lol....

My kids are incredible people.  Every so often though like you I must wonder who raised them at that moment....and I think...is that the struggle of my kid dealing with parental loss...parental illness or is my kid just being a normal pain in the ass at this moment in time??

I actually hope it is the latter.....Today I was driving in the car with my daughter and if I did not need the lift....I would have left the car....

I know my kids have fear of me leaving this earth...however like the movie Moonstruck...where Cher slaps Nic Cage in the face and says,  "Snap Out of It"!...that is what from time to time I would like to say to my kids.and several other people as well :).    Sometimes you gotta just find the grateful gene and snap out of it!!!!  And chalk it up to life....and have a little more respect.

More about this in next post...:)  Next post is less personal and more clinical :)

Tuesday, November 5, 2013

Cedar Sinai Comprehensive Cancer Institute

This post is dedicated to Karen.  This is where I have been treated for 12 years.  I like this place.  I have seen other cancer centers visiting others that need help.  Here is a little explanation for you.

I like Cedars because it is big and small at the same time.  The Medical Center is huge.  The Cancer Center is big as well however in a compact space and everything that you need is there...the doctors, the lab, imaging, chemo...all in one place and the chemo area is open 24/7...many times you never set foot in an emergency room.. you can just go into the chemo area.  This is very important for saving time, germs, and your care.  (and your mind)

The "Sarcoma Center"  are all of the doc, nurses, radiologists, etc. that have a specialty in sarcoma...there is no building "center"...just fabulous people that know what they are doing for many, many years.  Longer than I have been there.  This is a good thing.

The center of the sarcoma center is Dr Charles Forscher..a lovely calm man that knows his stuff and cares about what he is doing.  He is polite, kind, and most importantly..knows his stuff :).  The man that really saved my life all of these years is Dr. Alan Silberman...magic surgeon..magic oncology surgeon.  One day I will write a post just about the docs.

And there is my professional dear friend Susan Lowenbraun, nursing director of the sarcoma program...she wrote it herself...without her for sure I would have been crazier :).

Much of the staff I have known all of this time.  They are wonderful as well.

Cedars itself is located in a tourist heaven....right in the middle of Beverly Hills, West Los Angeles, Century City...and the list goes on.  There is somewhere to walk and something to do all of the time.

There are other wonderful places to get treatment.  This is just where I go.  This is my fyi for the morning.  If you like big but small.....everything in one stop...fabulous people...this is the spot.  No medical institution is perfect for sure...trust me I know...read my other posts...this is as close as you can get among a few other places :).

I am sorry that you have this crappy disease ...it sucks...go somewhere where there are great people and that you are comfortable.  xoxox  They must have a specialty in sarcoma!!!!!


Monday, November 4, 2013

Me and My Lung Tube Adventures :)

Well I have this side drain now. I came home with it after VATS surgery.  If you have an air leak in your lung,  it has to drain...I wish that I could draw it for you...It is a long cylinder with a small cup at the bottom...it has a vent..it is plastic.  Let me again say that it has a small vent from the small cup :).  You move the wrong way at any given moment and it leaks....it leaks...

1.  I have to sleep sitting up with the drain hanging over the side of the bed so it does not spill all over my bed.  I have to check it every so often and empty it just to make sure I do not spill where ever I am at the moment.

2.  I am very sorry that I missed Halloween.  I could have walked every where with this drain out in the open...now I would just freak people out where ever I went to just "let it all hang out " :)  I do have to go to Whole Foods :).

3. Clothes, dressing is an issue..not many places to put a drain in your pants and leaking as well :).  My lung gook is red...like blood red :)  Kim Khardasian ...where are you when you are really needed for fashion tips???? :)  You could really help me here!

4.  A drain in your pants can be mistaken for so many things in life :)...Glad that I live in Los Angeles...where anything goes :)

5.  Can't shower...just pulled my head out of the sink :).

I hope tomorrow that we can remove this "thing "....:)

Video Assited Thoracic Surgery...VATS

I just got home from the hospital today and just did this procedure on my right lung.  It is easy to do except when an air pocket forms in your lung and does not seal shut... you go home with a lung tube until it does heal...and then you are free.  So right now I am home with this little tube that is hanging on the right side of my body.  It has a vent..it fills and if I do not keep an eye on it my laundry will double in size in minutes :).

This is one of those little things in your medical life that drives you nuts.  I am right now a little nuts.   I have to empty the gook coming out of my lung and check twice a days for bubbles...seeing bubbles means I have not healed and must continue with the tube.  I hope that I do not see "bubbles" in the morning.

I can not lift a thing...move real well etc.  I can not pick up a sturdy pan to cook with. I need a home health care nurse for the very first time to come in ...clean my boo boo and check everything. I am used to being able to not do everything for myself every so often however I did not expect "it" this time.  This was supposed to be "easy". 

I thought my next few blogs should be about mind and body care in long term illness. Tune in.  I will be writing more later today.

Sunday, October 27, 2013

The Differences Between Abdominal and Lung Surgeries

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

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

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

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

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

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

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




Friday, October 25, 2013

Relax Folks

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

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

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

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

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

Love and Health ...Amy

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

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

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

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

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

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

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

Wednesday, October 23, 2013

How I really Feel About Surgery on Monday

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

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

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

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

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

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

Saturday, October 19, 2013

How to Make Treatment Decisions in Long Term Disease

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

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

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

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

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

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

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

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

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


Friday, October 18, 2013

A Little More on Coping

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

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

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

Thursday, October 17, 2013

Coping With Long Term Disease

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

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

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

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

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

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

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

Sunday, October 13, 2013

Next Surgery

Hello Folks....

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

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

I am supposed to heal well with no breathing issues. 

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

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

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

Wednesday, October 9, 2013

Your Medical Records

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

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

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

Monday, October 7, 2013

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

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

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

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

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

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

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

Wednesday, October 2, 2013

Final Thoughts on the LMSDR.org Retreat

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

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

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

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

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

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

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

Monday, September 16, 2013

Anatomy of Patient Advocacy

There are 3 ways to care for yourself when you are ill. They are...how to arrange your finances, how to care for yourself emotionally, and how to arrange your physical care.  Stay tuned for info as I write again everyday....a little everyday to help guide you through your medical care.

Tuesday, August 27, 2013

Ocean of Hope / Sarcoma Alliance

This is a special report regarding the Ocean of Hope event on Sunday, August 25th on the beach at Manhattan Beach California...all day long :).  It was freezing about 60 degrees in August...what the heck?  What happened to summer?

I have discovered a few new things at this event.  Number one...men have more hair at the beach...on their bodies and faces however not on their heads.  Just my observation...not good or bad ...just what I saw :).

 The bathrooms were surprisingly very clean! There was an attendant there the entire time.  That is amazing.

I could not do much on that day.  I felt bad.  I had just had a surgery so that I could not lift much.  Next year will be better :).

I can not imagine how these fabulous folks paddle on those boards all the way from Catalina Island to the shores of Manhattan beach.  I know they have muscles that I do not... however they also have will power that they would equate with surviving cancer for 12 years...hmm.. I would have to think about that really. 

I guess if I had a choice of surgery/and or chemo vs paddling in the ocean....I suppose I would buy the biggest wet suit that I possibly could and try the ocean paddling...for a few minutes :).  I would record it ...especially the part when the boat comes to get me and I am eternally grateful...forever.  I would paddle more to get rid of cancer :).

All we do is give them lunch after they paddle in...oh ...and yes...they get lays or laid as well...you know...like Hawaii...:)...They look beautiful.

I thank these people for raising thousands of dollars to help people like me...struggling at times with this rare cancer...looking for hope...a cure...anything to keep going.  And many times we get to keep going :).

Their paddling.. it ends at some point and they start again.  They are challenged in a great way and having fun.  Sometimes the cancer battle never ends and it is not fun.  Thanks so much for all of your efforts!  God Bless!

Thursday, August 22, 2013

Learning How to Advocate For Yourself

Yesterday I went to support group for the first time in a very long time.  I helped to start the group with the folks at Cedar Sinai Comprehensive Cancer Institute in Los Angeles.  It is a sarcoma group. It has been 5 years now...hard to believe.  There have been great victories and terrible losses as well both personal and professional.  I thought I would share thoughts dedicated to you and this group.

Learning to really care for yourself with the help of others is very difficult.  We are raised by our parents to be independent and strong.  We like to do everything and I mean everything by ourselves.  It makes us feel good.  Especially women..Moms..like to take care of everyone and everything.

Then one day something happens.  It does not have to be cancer.  And you find yourself needing lots of help with stuff.  Cooking a meal, needing a ride, combing your hair, taking a shower, making a phone call or paying a bill.  And you are lost.  Its ok to feel lost for a little while.

After feeling lost for a bit and it happens to everyone...if you say never you ...or ever you...you are either lying or this has never happened to you...yet...it will.

Here are a few tips for you to take care of yourself.  Taking the strongest role in organizing your care will make you feel better.  You do not have to do everything to do this.  Just designating a person to help you gets your life moving again.  Take as much control as you can...and let the rest go.

Give people actual jobs to do and times to help you for example,"Amy I am sorry that you are not well, how can I help you?"   Thanks Sam...what days and times are you available so that you might help me?  And what would you like to do?  I need help Thursday with a ride to the doc or Wed I need to go food shopping...any of that work for you?   My dog could use a walk on Friday...

Another one....Sam I am trying to organize my helpers for the next week.  Are to able to sit down with me and help me do that?  Then I would know that I have help this week when I need it.

Another one....Sam ...I am single and live alone.  I am looking to designate 2 people that I can really trust in case I need help in the middle of the night.  Can you be one of those people or help me contact some friends to see if they are available?  Thanks!

I could go on forever.  Being ill does not mean you are not strong, able and fabulous.  Just have to use your words differently to organize your life.

The strongest people I know are those living with chronic illness everyday.  They wake up, seize the day and often you have no clue who they are.


Thursday, August 15, 2013

August 25th Blogging from Manhattan Beach!

Live Blogging on August 25th from Manhattan Beach, California for the Sarcoma Alliance Fundraiser, Ocean of Hope.  Check it out!

I have never blogged form the beach before :)  I am over 25,000 views now!

Yay!  Thanks to all of you!  Much more info to come!

Sunday, August 11, 2013

New Healthcare Coverage is Coming

It is coming folks...new healthcare coverage and most if not all are very confused as to what is going to be happening...even the agents selling it ...they do not know everything.

Make sure that you sit down with someone that is formally certified in selling the new plans and has had plenty of experience before this!  There are lots of nooks and crannies in all of this that you will need to know.

Each state is different and each company can choose to participate in a different way...group ...individual...or both.

If you enter one of the exchanges can you get out when you choose and to what?

I am doing ok....scans next week so I am laying low :).  Do your researching with someone educated!

Tuesday, August 6, 2013

Hello!

My scans are in two weeks...there is a lot of praying involved here....so join me!  I will report back in a couple of weeks.  In the mean time...I am taking my certification in the new health laws and rules.  That will be insane.  I will report back on that as well.

Wishing you all peace and health!  I am doing just fine.  I am working on my book as well....much of my blog will be in it.    No time...no time :)

Sunday, July 21, 2013

Still Here

Hello Folks...I am sorry for not typing. I have much work to do and I am tired  :).  I will not be posting for a short time.  I feel ok. :).  I am playing catch up!  And I have not been in deep thought lately!  I will be back soon!

Sunday, July 7, 2013

Over 12 Surgereis and Then Some/Survival Skills

If you have been reading awhile you know my story.  If you are tuning for the first time ...please read more.  I can not catch you up anymore.  It is 12 years next month.  This seems hard to believe.  I do not think that I am the longest living person with stage 4 cancer however I must be getting there.  I am lucky.. I know...because I am here and physically well, however it does not come without mental and financial scars :) .

My new adventure for helping others like me is called Vision Board for a Cure.  My website will be up next week.  Vision Boarding is an ancient art going back to possibly the times of the caveman.  It is a way of manifesting how you would like to see your life develop in the future.

I will go into it more next post. I have a developed a program so that patients can do vision boards to learn how to advocate for themselves in the areas of financial planning in illness, and the emotional and psycho/social issues of having a serious illness.

I teach folks through creativity and art to come to grips with their reality...whatever it might be and then we discuss using certain tools to make their lives better.

The skills you used when you had no illness are just as important to use when you are not well and then some ...so I will be inviting you to go on a bit of a journey with me to wellness..no matter how you feel, no  matter where your illness is taking you.....I will post everyday at the end of the day....so Monday night/Tuesday morning will be the first post.

Much of this I have talked about in previous posts however I am doing this in a different way for the same result...for you to feel better!




Saturday, June 29, 2013

Still Here

I have been working and creating since surgery a few months ago.  I am doing well....I will spill the beans next week on this new project.  Stay tuned.  Please continue to spread this blog.  It has important survival info in it.

Remember you can negotiate all of your medical bills....check those insurance codes!

Thursday, June 20, 2013

One More Time

August is 12 years that I have been doing leiomyosarcoma...12 surgeries and a host of other issues.  As we go along as patients we are always trying to make deals with God....any God...all Gods...to stay here a little bit longer.

If I can just see my kids graduate grade school....middle school...college...get their first real jobs...get married...be a grandparent...

If I could just fall in love one more time before I go.  If I could see that person one more time.  If I could have incredible sex one more time :)...even if my body can not remember what that means :)  I will find a way to remind it!

If I could lay on that beach in Kaui one more time or just see the hummingbirds this summer on my door step while drinking my coffee...one more time.

If I could wander New York City one more time..just please one more time...

There will never be enough time...never ever be enough time. :)


Wednesday, June 19, 2013

Health Care Exchanges

I just found out that the Cancer Center and Hospital that I go to will not be participating in the coming health care exchanges.  Do not switch any of your health insurance until you check all of this out.

Also understand that this process is a fluid one.  Things can change after you jump in as well.  Speak with someone that can analytically guide through what is happening today as well as what might happen tomorrow in your healthcare.

Be educated...be patient, listen and get a second opinion!  I always say to buy health insurance as if you are sick...then you understand the true cost :)

Monday, June 10, 2013

The Cost of Chemo

Please write your congress people and President Obama today regarding Sequestor.  They want to cut chemo therapy drugs to seniors and the disabled on Medicare by 2% and pass this cost on to the cancer patient....are they nuts?  Seniors and the disabled?

We pay these people to work for us....they have the best benefits and healthcare in the world, which they designed for themselves and they do this.  Shame on you.  Lets talk numbers Congress. Invite me to speak.

I do not understand your logic at all....

Friday, June 7, 2013

All Kinds of Information

Dear Friends,

Recovering from this last surgery is coming along slowly however well.  I am back at work after my 12th ab surgery and running around as best that I can :).  Due to working, packing and moving I will not post much the next couple of weeks.  I will try.

You can search and read anything here ...4 years worth and still more to say!  :)

Until someone cures this horrible disease, invents better medical insurance, or I die ( little cancer humor), I will keep typing!

Love and Health,

Amy Regenstreif


Saturday, June 1, 2013

Back To Business..Health Insurance

If you live in the state of California you may know that the only insurance companies participating in the healthcare exchange at this time are Blue Cross, Blue Shield, and Kaiser.  This will give you all less choice.

However what does all of this really mean for you?  Starting Monday I will start posting a little info everyday about Obamacare.  Unfortunately I have blocked you being able to comment here due to recent posts that were filled with viruses and other crazy posts.  If there is an issue that you want me to discuss please send me an e mail.

Did you know that the original document for care is about 11,000 pages??????  Crazy.




Friday, May 31, 2013

Alone..but not Really Lonely

It has been awhile.  Huge abdominal surgery on April 9th and still somewhat recovering..not just physically however mentally as well....my 12th ab surgery in 12 years...for stage 4 metastatic leiomyosarcoma.  I am skinny..however you would never know what I have been through.  I am alive...yay!

This has been my longest and most difficult recovery in all of these years....and the most time I have spent very much alone...no pity...I did a lot of it on purpose due the nature of my recovery.  Frankly it was just embarrassing to me to have to run to the restroom every 2 seconds..my digestive system has been a mess.I could not plan very well and I did not feel well...so I occupied myself. I was not in a great mood.

It has been a little weird.  I am not sure whose body I am in :).  I still have eating issues ...so much I can not eat...and I am size 4....I know in Los Angles that sounds wonderful...6 would fine with me :). I can't find the muscles that I used to have.  I believe a little physical therapy is in order.

I am experiencing a few interesting psychological issues...it is crazy (LOL) when you have had cancer for most of these 12 years and kept your sanity throughout for the most part...I feel like I am giving therapy to myself :)...I guess that's what my blog is for me.

A surgery seems to change my entire life and some of those around me every time it happens.  I had recently reconnected with a significant other of many years...one surgery sent him running..it is ok.  I think he is where he is supposed to be....I hope.  I want the best for all of us. 

And I have changed my career goals to not run around as much.  I think the biggest issue I am facing right now is more cancer.  LOL...seriously...the really shitty kind of cancer that really starts to affect you physically.

In 12 years I have always recovered as good as knew almost...and now I really am starting to wonder about my long time future.  I have always lived in the present....and I am for the first time a little nervous about the future...not immediate future...however close enough. 

So I am saying big prayers for everyone I know and myself as this journey continues.  I am excited about a couple of things happening in my advocacy and insurance work.  I do like my work very much.

Now I am starting a new hobby and thinking about some new social activities as well...and life goes on.  You all keep going.  Cancer sucks ...but if you are alive...then we keep living.  It is all precious!  Time for me to go back out and about...before I really do get lonely :)


Tuesday, May 28, 2013

Still Here...Just on Sabbatical

As I have been typing for many years I am just re grouping my thoughts before I return and healing from this crazy surgery.  I am doing well.  I will be back soon!  (week or so)

Love and Health....

Thursday, May 9, 2013

Off to Class

I will be taking a class on Obamacare and will let you know what I learn.  The problem is the information probably changes everyday! :)

Intimacy and Illness

Had to add this today.  I know you think I might be talking about sex and illness however I am not.  That is in another post.  I am talking about the intimacy of illness.  It can be more intimate than great sex..like certain kind of hug can be as well.

When you are ill you might be at your worst.  You hair is not quite right (if you have it), you might be having physical issues or just recovering from a surgery and you are not yourself. It is a very special time because you want those folks around you that you are willing to show your real self to.  And sometimes they run because the thought of you being anything other than your healthy self is just too much for them to bare. 

However this time could be looked at in such a different way.  It could be a very special intimate time of loving and learning....not just between couples..it could be be among friends, and other family members.

And yet sometimes they run the other way.  It seems like a practice "run".  They need to live as if you were not here for awhile to practice for the time when you might not really be here.  And isn't that sad for them who run.

If you run you will miss me in maybe some of my best moments because I am still here.  I am still here in a big way.  I feel sorry for you.  I am not angry.  If you run and never learn how to stay and experience the days that will follow for sure you will "practice" your entire life and miss so very much. 

Thursday, May 2, 2013

Packing and Moving...again

Well it is that time of year and I decided to move closer to my office.  So in the midst of healing from this last surgery I am organizing and packing.  I hate moving only because I go through my things again and again.  It is those memories of the house that I once owned, people and places long gone that I find both heart warming and painful at the same time, to look at. Those feelings are palpable.

I miss feeling "settled" in my space.  Maybe someday ..maybe not...either way I am happy to be here and moving forward..hopefully with a very long break from this disease.

On to summer :)

Follow Your Own Advice

I actually woke up today feeling a bit better and it occurred to me in over 400 posts here that lately I am not following my own advice regarding my healing process.  I am giving myself a break as this has been a bit of a hellish experience however I have been here before and I have had much practice in recovery after almost 12 years of this.

Maybe the more you do this, the harder it is to rally at some points.  That being said time is precious and I will waste no more while I am still here.  So here goes...the real recovery process begins.  I have read enough books, watched enough TV, laughed, cried, screamed, contemplated my navel of which was surgically removed long ago, and I am done wondering about my life.  Doing is best.

So today I will start planning again my future, which seems to change a bit after every surgery.  I just hope this is a long break and they cure this disease before I am interrupted again.

I just read in a journal this morning that said that many cancers are predisposed in your genes.  That does not make this cancer patient very happy at all.  This could mean that there is no escape....or is there???  :)

I hope so.

Wednesday, May 1, 2013

Waking Up and Falling Asleep

Well this healing process is taking a bit longer than I thought.  I want my body back...the one that can eat almost anything, have a cup of coffee, and not have to go flying at warp speed into the restroom.  I guess things change a little bit when all of your digestive system is taken apart and then put back together.  I am getting way to restless and not patient.  I went on the treadmill today.  That was fun.  I am slowly going through a lot of paperwork and getting back to work.  I do not like being home so much.

My worst times of the day are the moment I wake up in the morning and when I try to fall asleep at night.

In the morning my body is a bit more difficult to deal with.  The split second I open my eyes I am not too comfortable and my mind kicks in....I remember...another surgery...more cancer..what part of me is not working this morning.....what will I do today to occupy myself in a fabulous way...I hope I feel much better today.  Cancer sucks however I am still here...I want to be here in a better way for a long time.

Then at night...My head hits the pillow and my mind wanders to all kinds of places from the past and I wonder about the future.  I keep thinking that I made it through 12 surgeries ...what is one more?  I am here and time will pass and I will feel better...however I still worry.

I love the daytime.

Monday, April 29, 2013

Navigating Long Term Care

I have posted about this in the past however since this last surgery I feel it necessary to discuss it again perhaps in different way, since once again being a patient myself.

I know all of you realize at this point that your health insurance covers nothing having to do with eating, bathing, continence, toileting, mobility, and dressing once you return home.  These are called your activities of daily living.  Then there are your incidentals of daily living...cooking, cleaning, paperwork, shopping, paying bills, making calls, etc.

Your choices for funding this are your own money or long term care insurance.  You can only get this insurance when you are fairly healthy...there is underwriting involved.  I have been marketing this type of insurance for over 10 years.

I am going to use myself as an example here.  I have no horrible nursing home story of me personally and there are millions of stories.  I have not yet used my insurance in all of these years because I have been fortunate enough to heal in less then 90 days.

With that being said healing from this surgery this time has been very difficult.  There have been a couple of moments when a dish was too difficult to pick up.  There have moments when I almost did not make it to the restroom.

I can also remember a time doing chemo when I was so out of it years ago that I just could not move  ...to do anything at all.  I am not telling you these things to feel badly for me.  I am telling you because at any time you could be me and how do you want to receive care?  I want it not from my friends and/or family.  You can shop for me, even cook for me...however changing my clothes, bathing me, helping me in the restroom...picking me up off the floor...I want no family member or friend to help me with those duties.  I want a stranger to help me that I can pay who is emotionally uninvolved and someone that I do not have to be embarrassed in front of for any reason.

Your family wants to watch a movie with you or play a board game...they do not want to wipe your ass...trust me on this one.

Your family also has to go to work and earn a living.  They may even live in a different state and can not come.  Your friends are busy as well.  Long term care planning with or without insurance will give you dignity and some control.  You can not control your illness maybe...you can control your care...if you plan!

Saturday, April 27, 2013

Treat Your Healthcare Like a Business

http://www.TreatYourHealthcareLikeaBusiness.com

Check this out!  Thanks!  One of my day jobs and more coming. 

Thursday, April 25, 2013

How to Help Someone that is Not Well

I have been very lucky in this department.  Other than a bit of food shopping I have been able to always care for myself.  Thank heaven.  However I am always somewhat amazed by the folks I hear from and do not hear from at all.  Thank you to all those folks that have reached out to me over these years.  I would have been lost without you.

So here is some advice on how to help someone that is ill.

1.  Do not ever say call me if you need me.  Do you think that ill person will ever call you, even if they need help?  They will not.  I have only called people over the years that really reached out to me first.  Call that person yourself.  And not just once.  Call the person a few times and see exactly what he/she needs.

2.  Often an ill person may not want company however he/she may really need something...like food..help with laundry, a phone call made on their behalf...ask say.."I have the next two hours free.  What can I do for you in those two hours".  Be specific in your offering of help.

3.  Let the person that you will be checking back in every so often and that if an emergency really pops up that you might be available to help.

4.  I have found over the years that certain fabulous friends are willing to do only certain things and I have been respectful of their wishes and grateful for whatever they have been willing to do.

I have had friends willing to accompany me to chemo or sleep over night with me at the hospital.  Others shopping and cooking for me.  And there are those that just want to have fun with me when I am better and I appreciate everyone telling me the truth which allows me to better support myself physically and mentally.

It is a very difficult thing for some patients to accept help.  We are stubborn and proud as well.  That is why it is important for those that want to volunteer to help to really make their offers known. 

Before You Enter the Hospital

1.  Obviously make sure your medical directive is done.

2.  If you know in advance that you will be having financial issues try and organize yourself at home etc way before you are home recuperating.  Organize bills and paperwork in case you will need someone to help you as well.

3. Who is spending that first night with you in the hospital?  The Nurses themselves will ask you who that person is.  This is not a time to be independent.  Please have someone with you in your room, for the night on the day of your surgery.  You will need that person. Do not be alone.

4.  Pre arrange your care for when you return home.  What will you be able to do and not do on your own when you get home and who is helping you?  When I got home last week picking up a dish was an issue...do not be alone everyday.  Surround yourself with helpers :).  You will recover better as well.  Do not forget to contact the Social Worker in the hospital and discuss with her how she can be of service to you in your care.

5.  See the dietician in the Hospital as well regarding any food issues that you might have in the hospital or coming home. 

6.  Pack your bag way in advance including things like PJ's..slippers that you can throw away when you leave the hospital.  (due to germs it is advised that you do not walk at home is any shoes that you wore in the hospital)  Bring a small robe as well.  Hospitals are freezing places due to germ control.  Be warm.

7.  Arrange for someone to bring stuff to you after surgery.  Do not bring valuables with you until you are ready to watch them yourself.  Many people have access to your room.  This is not a hotel.  Save your computer and cell phone for later.

8.  Maybe let people know that you would like or not like some company.  I do not like company too much when I am in the hospital because I am focused on one thing...getting out.  I am busy walking ...trying to eat, etc.  A lot of visitors zap my energy and I can to do what I need to do.  In addition quite frankly I do not like a lot of people to see me in that kind of shape.  This is important time for you.  Be selfish.  Get healthy.

9.  Before you go into the hospital do something wonderful for yourself.  I usually go get a massage.  With your body being invaded in such a dramatic way you need something relaxing and soothing first.

10.  Lastly who is your person that will help you in any emergency no matter what it is.  Make sure your person is ready :)




Tuesday, April 23, 2013

Many Abdominal Surgeries and Eating

I am sorry folks for not typing more.  I have been a bit overwhelmed at the length of this recovery.  This has been my biggest surgery yet.  I am also older and this is about the 11ht surgery...I just think that I should be better tomorrow...and I will...just not yet.

I really miss eating.  Digestive surgery is a bit different than other types of surgery because you must eat....or you are dead.  You can live without an arm...and yes even a breast or two however you can not live without your liver, pancreas, bowel, etc.  These are very much key parts of your body.  Mine are a mess at the moment.

Every body function right now is a chore....including eating....anything ...everything....and not knowing the ramifications of what you just ate in the way which it will exit your body.  There is no pleasure in this at the moment.  I miss the pleasure of eating.

So I have turned to music and reading...and getting ready to start working shortly.  I would pay big bucks for the ability to inhale a milkshake with lots of whip cream at the moment!




Sunday, April 21, 2013

Hospital Follies

Humor is necessary...everywhere....a few medical funnies in the hospital. 

This time around my room was near the nurses station.  I like this.  it makes me feel a little more secure just in case I need to scream! :)  And I like listening to hospital gossip.  Why not?  I have nothing else to do while I am there not able to move or eat :).  And I love medical people as I now spend a good portion of my life with them.  I wish when I was younger that I either became a singer or worked in the medical field...I actually feel like a professional medical person now...I am just not sure what to call myself..huge advocate for others does apply.

So I am laying in bed minding my own business when I hear a nurse screaming from the station, "Where are all the nurses? (in a panic).  The phones are ringing, lights from rooms are flashing and there is no one around. Where is everyone??????

I am a very calm person.  I was not worried as my hospital is world class all the way around...however I thought to myself...if I was a new patient and heard this that I might have some cause for concern?  All the nurses of course were there.  They were just doing what they were supposed to do.  They were in their patients rooms. I wonder if they ever look for doctors so frantically :).

A different evening the gal next door was walking her imaginary dog at 3 in the morning.  There I was laying in bed trying to sleep....

"Sit Honey.  Do not go to the bathroom on the neighbors lawn.  You are so cute in your new coat."  Was that her dog or her husband? "

They give some great drugs in the hospital. :)

Recovery

I have a lot to say about this particular surgery, the hospital stay, doctors etc however just in this post I am going to to talk about some mental issues in recovery.   There are many of them and I believe that they are exaggerated in long term cancer as they keep reoccurring over and over again.

The first one right out of surgery is my concentration level.  I am having major issues with focus and just being able to finish a task.  I know many of you have this in your regular lives however this is driving me nuts.  I am going to drink coffee to see if this helps for now.

Another issue is just a bit of post traumatic stress.  My body just had a major assault physically and mentally.  I am trying to work through it all and each time the interruption is bigger in my life.  As I sit down today to make a plan for the next couple of months, my mind wanders to what has actually just happened....that I had my 12th abdominal surgery...that my rectum was re built....that my surgeon who is a genius could actually do that...and that I actually had that done to my body.   And that I may never be done with cancer until I die, even though I fight and fight and fight everyday while trying to live a life of quality and enjoyment....and it has been 12 years of this much of the time.

I feel for loving family and friends around me.   A couple have run away again and that is expected.  I am never surprised anymore by the behavior of some people.  I feel mostly for my daughters who are petrified and worried sick about my future.  I tell them not to worry....we keep living our lives no matter what and I will.....I am so not done here :)

I want to run from cancer however I can not, so in order to fight properly I must accept it and vow to help others live like this....so that I can help myself and me.  Next post....Hospital Follies

Thursday, April 18, 2013

I Made It

Well I am home :).  I made it through well and my surgeon is a genius.  He has saved my life for the 10th time.  I will start posting on a regular basis tomorrow.  Thanks for all of the well wishes! 

Sunday, April 7, 2013

Thoughts Before Surgery/Last Post for Awhile

Please check back in about 2 weeks for more info :). 

I think in these 4 years and about 400 posts I have discussed just about everything about fighting illness.   I could keep going forever as our health insurance system continues to unravel and costs sky rocket.  And I will discuss this more in detail in the future.

Right now I am wondering how I might wake up from this next surgery.  I know I will wake up....I am just not sure in what shape.  I am praying to all Gods :)....meditating...doing Tai Chi...and imagining myself dancing the days away in Hawaii.  I am also watching funny movies all day in between abdominal surgery prep...sometimes the fun just never ends :)

You must believe in yourself.  You must believe in your life as it might be...everyday...

With love, Peace, and Fun!  I will be back soon with oodles of new information and stories.

Thursday, April 4, 2013

The Only Good things About This Surgery (humor)

1.  I get grow hair in places that normally , I would not allow it.

2.  I get to have gray hair on my head :)

3.  I do not have to put make up on for quite some time.

4. People will cook and clean for me.

5.  I will get great foot massages by the nurses assistants.

6.  Everyday many people will ask me how I feel and really mean it (lol)

7.  No one will run away from me because I have cancer.

8.  I get to see old friends that I have known for 11 years at the hotel :)...same floor ...they too wonder how I keep coming back....Me too ..

9.  When I am feeling better I can sneak to the lovely lobby and listen to the volunteers playing the piano and visit the Chapel to pray.  I will visit the Chapel a lot.

10.  I get to watch General Hospital everyday and wonder if my nurses and doctors are having sex all over the hospital...is McDreamy walking in? :) hmmm...

The best thing is that I will get better...and better....and better


Anatomy of a Surgery /Part 1

I am heading in to my 12th abdominal surgery.  I started this at 44 years old.  I am now almost 56...yay and yikes!  For those of you that feel that the new 60 is 40 etc. I hope to God that is true :).  I am making believe that I feel that way.

Tomorrow is the last day for a few weeks where I will be able to eat regular food.  Saturday I begin a liquid diet to clean out my system so that the surgeon can operate properly.  I will be doing other things as well to clean out my system. Sometimes I believe the days of prep are worse than the actual surgery.  I love food :) and having fun trying to actually gain weight before all of this happens. I do not want to be too thin..ever.

Part of me is like a robot.  I know the drill well.  And the other part of me is petrified not knowing what parts will be there or not, when I wake up.  Waking up from surgery is always my biggest nightmare...there was one time when all was ok and another time when the epidural was not working and I really wished I could have left the earth.  Even child birth could not have prepared me for that kind of pain.  I could not speak for awhile and I just lay there.  Finally the nurse saw tears and increased the medication drastically.  She was a great nurse.  I always pray for great nurses. They are priceless.

And then there was the time that I woke up and started feeling around my entire body.  My surgeon had prepared me for the possible loss of a kidney...I was looking for it...I found it and the epidural was working so well I just wanted to get up and dance. :)

I also picture all of the tubes that I will wake up with and know that they are there to help me...not hurt me.  The nose tube I imagine would be a great punk rock accessory :)...the huge one in my neck...great for Halloween...and the catheter...not sure what to say about that one :).

Lots of love and more later.


Wednesday, April 3, 2013

Sarcoma Alliance Fundraiser

http://www.active.com/donate/outriggero2h2013/aimeepaddles13        (hope I got this right :)   Maybe one d in the paddle.....

Donate 5 dollars or more today...... help a very ill person get to a sarcoma specialist and save a life!

Share and spread the word.  Aimee only needs another $175 to reach her goal of $1000

More than that is fine as well :).  Thanks!

This public service announcement was brought to you by all those folks that would like to see cancer wiped off the face of the earth :)

Love
Amy

Tuesday, April 2, 2013

Food Frenzie

Back to a little fun...I am not sure why women are so weight obsessed.  Older women really need 5 to 10 extra pounds to look healthy in older age.  There is nothing worse than a painfully thin older woman trying to look good.  You don't if you are doing it on purpose....just sayin...in old age thin is not in...I am 55...not old..however still a time when some age shows...especially if you are too thin.

And heaven forbid you get sick and loose more weight...can't talk about it.  So this week I am trying to eat everything everywhere, all the time.  I do not want to be that painfully thin woman after surgery!

I am eating Haggen Daas Ice Cream...and anything else in my path.  A size 2 is something that I do not want in my future....6 is ok :)...please pray for my 5 to 10 extra pounds! I need it!!

There is much jello and Ensure in my future in surgery prep...along with the other stuff that I can not discuss here...well maybe later...:)

Remember...sense of humor is everything..it has to be for now :)

Your Family, Friends, and Long Term Cancer

Whether you are new to this blog or have been reading for years you know that having so many surgeries, etc is quite taxing on you and all of your loved ones. 

I have had so many people over the years run to me ...run away from me...run back...and run away again.  I have had strangers help me...people I have known for years do nothing.  Family members never contacting me once during all of these years except on holidays with a card.  I have had people tell me to call them if I need them...that is always the funniest to me.  That is not how it works really ...you need to call that person that needs help...that not sincere call me routine is so obvious :).  Trust me...I know.  They will wonder why you never called them for a second and then move on. 

I am always in awe and grateful to the folks that just call me and ask me what they can do.  I have had over these years an amazing support network of kind and loving people... Whether you come and go or stay for awhile ...Thank You. I have been very fortunate for the kind and loving people in my life.

In the beginning of an illness the support network is usually large.  People are in shock and want to help.  After awhile it lessens...I will not go into the whole psychology of this however take my word for it.  A lot of the support in the long run has to be created by you the patient, as people just do not know what to do.  So you have to let them know how they can help you.  Please tell them.

In creating your long term support, do not be shy.  If you need a ride to the doctor...tell someone. If you need help with anything...tell someone!  People like to help ...sometimes you just have to help them, help you. 

If you are a very solitary  person and do not have a lot of people seek out the social worker at the Hospital for info on free services like the "Wellness Community" or the "Survivorship" program at the cancer center. Do not be alone when you do not have to be.






How to Prepare for a Hospital Visit.....

Back to business for now folks.  What do you need to do at home before you check in to your hotel room.

1.  Pay your bills ....a months worth ...if you can not,  call who ever it is and make an arrangement until you get out of the hospital and can tend to these issues or have a friend make these calls for you.  Do not let them sit.

2.  Make sure your medical directive is in order and your will/trust.  You may not be dying however should something terrible happen you really want your affairs in order for your family for so many reasons.

3.  Who is sleeping over night with you the day of surgery?  Make sure you have someone stay the first night.  I am in a world class hospital however do not be alone when you have no clue what is going on around you. ..if you are in ICU they do not allow that however in a room they sure do.  And the nurses like it when someone is there ...it helps them with their job knowing that you are always being watched by a loved one right out of surgery.  Be nice to nurses.  They are over worked and under paid.

4.  Ask a lot of questions .make a list...for admissions...for the nurse...for the doctor...for anesthesiologist?

5. Know what your insurance covers and what it does not.  Make sure everyone takes your insurance so that you are not surprised with a huge bill later.  That includes the anesthesiologist who you never see until you arrive at the operating room.

6.  Prepack some warm clothes for when you are feeling better.  If your stay is long like mine is...a week or more eventually you need regular PJ's...slippers that you can throw away after because hospital floors are filled with germs that you do not want to bring home....and really warm socks.....and an easy robe to slip on and off.

7.  Get ready to walk...the faster you are up and about walking...the faster you will get the hell out of there.

More later about Money......and the hospital

Monday, April 1, 2013

More About Hair

In about 4 months I will have no hair for the 3rd time.  A little bit about bald women.  I could have cancer, or any illness or nothing and just choosing to be bald.  I am not going to wear a wig.  I feel no need to hide.  I am still me whether I have hair or not.  Get over it people. I will be ok.  I am gorgeous.

What is wrong with you that you feel the need to stare.  I am no different than you with your hair.  Men are so lucky sometimes.  They can be bald without people thinking that there is anything wrong.  They can pee almost anywhere and be shirtless many places. At least we all need to wear shoes.

Men can grow hair on their faces and that is ok too :) ...lol...however they are looked at when wearing wigs and make up!   Get over it people!

A little sense of humor goes a long way...there is another post in here somewhere about hair called , "When I Had No Hair"

The serious side.  Remember, "Your Eyes Are The Windows to Your Soul"...not your hair.  Hair grows back and if you let it go, you will know that your life grows back as well right along with your hair :).  xoxo

If you have a question or comment please e mail me at amyreg@aol.com.  I am avoiding a lot of spam here.  Thanks!




The Power of Words

The words you use to describe events in your life in illness..they mean everything in a positive or negative way...This is how I choose to heal.

I will only use positive words and phrases...

1.  The pain I will feel when I wake up is pain that will decrease in measure everyday.  It tells me that I am healing.

2.  I am walking the day after surgery.  Every step I take is one more foot out the door of that hospital.  They are the steps of a continued life of well being.

3. I will cry tears of joy and not tears of sadness because I am still here and I will function...my body is going to work.

4.  I must do this.  I must do this for Me, my kids, and every other person that wants me to stay here.  I am staying here awhile longer...a lot longer.

5.  The day of surgery and there after I am going to dream.  I am going to dream of me helping others heal like me, traveling the world, and dancing everywhere I go.  I will dream of love, hugs, and peace.

6.  When I wake from this surgery I will remember to dream that I am floating in the sea...in the sun...in a beautiful light and I will heal...and that epidural is working!!!!!   Seriously working!   LOL...

The hospital I am in ...the room...the people..the energy is all there to help me heal and leave ..that is what I am going to do.  Heal well and leave.  I know it. 

Sunday, March 31, 2013

Nightmares and How to Get Rid of Them

Having had so many abdominal surgeries over the years....the same kind over and over I am well aware of what I am about to experience. So the key is how do I do this mentally again for the best outcome?  This is the first post regarding how I do this.  It helps me prepare and I hope it helps you.  This is not only about surviving cancer.  It is about surviving any illness so please send it out to the world and help others.

If you have had a lot of surgeries like I have you have a lot of crazy mental images that might be coming into your head.  We have such a fabulous sense of recall...smells...tastes...images of the past that pop in and can ruin a day.

How do you control them?  You have to let them in...no choice really...they are there...so practice getting rid of them.  Replace them with a joyful memory...meditate..make yourself laugh...sounds crazy right?  I am not ...this works for me.  I watch funny movies...I make a call to wonderful friend....anything to get the thought out of my head.

If it is late at night or early in the morning I meditate quite a bit with deep breathing.  I imagine myself dancing in Hawaii or relaxing with best friends.  I imagine a huge protective white light around me giving me strength.  The point is you are allowed a bit of self pity and then you must get up and move on.  Time will pass no matter what ....time is not waiting for you to get better...so do the best you can with it.  It is all we have.

Next post is about the power of words.

Friday, March 29, 2013

Not Chemo/Surgery ...

Life is always what happens when you are making plans.  I am not having chemo until much later.  I am going to have one huge surgery to try and get everything out. That will happen the second week of April.  This will be my 13th abdominal surgery. 

I will try and type as much as possible for all of you that read.  My goal is not only to get rid of this disease but also to help others get through the day :).

No one can leave comments as I am not able to monitor everything while I am in the hospital.

I am happy to have this crazy surgery in the hope of being again disease free for awhile.  I am going to fight everyday until I can not :)...which I am hoping will not be for a very long time.

I will be posting all of this week.

Lots of love and health to all.  Please read all of the posts from years ago.  Always lots of info for you and more to come.

Wednesday, March 27, 2013

Chemo

I will be posting more over the weekend...little busy right now however I have lots to type...I will be doing chemo pretty quickly...will go into details later...

I did not anticipate this sudden turn of events however I should know better :).  I just always think the best. Funny how it is always a surprise to me.

On Sunday I will type a book.  Just need to prepare work and life right now.  I move forward with hope and love...I had a year and a half off...let the battle begin.

Sunday, March 17, 2013

20,000 Views and Scans

Dear Everyone,

Thanks so much for reading all of these years.  This is not a lot of views in comparison to much out there, however I know that I have helped many people and it makes me so very happy.  I started this blog years ago because I hate therapy and I just had a lot to say.  I had no idea of what would happen after writing or that I would even still be alive today.

Keep reading...lots more to come...I have scans Friday and I am of course a bit petrified.  I am also on my way to Central California to present a workshop on dealing with health insurance and medical bills....and much more.

I may be a bit quiet this week as I will be traveling and praying about Friday :)...to all Gods...in all languages :).  So have a great week and send this info everywhere.

Always moving forward with love and hope almost 12 years later...living everyday with stage 4 retroperitoneal leiomyosarcoma...you could be me...keep going!

Thursday, March 14, 2013

A Note on Health Insurance

Before you change plans please call your company and see if you have an unlimited benefit amount for your care.  This means that if you need millions of dollars forever that you have it....no cap on money..at all...

New plans may have a cap on the amount of benefit that you can receive. It may be in the millions however it is still a cap and easily can become an issue down the road as costs continue to rise.  Make sure you know how your plan works before you switch!  Read the fine print!.  Understand what you are reading!

Do not be so quick to leave your private plan and go with your group plan at work....more on that in next post.

Monday, March 11, 2013

Medicare Drug Deductibles

Your prescription drug prices may have changed or are changing.  Please check with your insurance company.  This is for medicare folks.  I am finding that deductibles have changed for 2013 and no info was mailed out.

You will be paying more.  This is no surprise....they just did not tell anyone by mail?  I can not print exact info because there are too many plans.  It is based on the tier that your drug falls into.  There are 4 tiers.

That is all that I can say here without this entry being a 100 pages long.  Call your insurance company for info.

Sunday, March 10, 2013

Stop Spamming This Blog

This blog is not for you to put your hair salon, crazy drugs, or for any type of company to advertise here.  Do not do it.  it will only be removed and no one wants to see it.

I am sorry to have been on a vacation as of late.  I will resume posting Monday!  Please read the last 4 years!   Great info here!


Tuesday, February 26, 2013

You Must Be Specific in Your Case

Having any illness is so very emotional.  I am crazy to say this right?  Allow yourself to be emotional however in your long term care and for your best interest at some point you must be able to put the emotion aside...if you can not... find some one to help you...and move forward to advocate for yourself in a non emotional state.  It will save you in ways that you can not imagine.

When you are talking to your medical professionals be specific...very specific as to your plan of care...always find out exactly why your medical professional feels a certain way about your treatment plan inclusive of the emotional, statistical, and scientific point of view...and be able to relate it to your case as it stands by itself.

Then in your own mind you can figure out exactly how you might like to move forward and have a very real discussion with your doc.

I wanted to get this out today...I will go into this more in the following days.   Always get the "Why" in your plan...very specific why....


Thursday, February 14, 2013

Valentine's Day Post 2013

I love you my daughters because everyday when the odds seemed just insurmountable ...you woke up and did your day....with grace, strength, love and you never gave up...not then...not now...not ever.  I am so very proud of you.

I love you my friends new and old because even when I was at what seemed to be my lowest point in my health and life...you did not leave me...bald at times...sad...etc...and you stayed there until I came back to being myself and you all helped me tremendously until I re gained my way in the world.  Thank you all ever so much.  There are no words.

To all the folks that I so dearly miss in my life.  I have not forgotten you.  I never will. 

To those that are struggling with anything in your health...you are my valentine...keep going as you know not what each and everyday may bring...hope...hope...you never know.  I have learned this all of these over 11 years of this crappy disease :)

Where is the chocolate??????!!!!

Monday, February 11, 2013

After over 11 years of Cancer...Some General Thoughts

1.  I think learning how to live is also about learning about death. I am not being dark.  I love being alive.  That is why learning about life and death is so important.  Then life becomes more precious.  Do not run from either.

If you run from life you will not live it really...you will just exist.  If you run from death, then you are missing much of life.  you are too busy running and not living :).

2.  Cancer like life will grow or not ...not the way you think it will.  It will always surprise you...either way...good or bad.  All the times that I thought I was dying ...I was not...all the times that I thought I was fine...I was not....cancer is just creepy and it sucks ...really :).

3.  I did not learn much from cancer...seriously...I was always a nice person...kind...and assertive when I needed to be.  Cancer just made me more of what I already was.  Maybe people that have cancer one time and it never returns can make believe that they learned something.  People that have cancer for years and years have a little more to say or not...I think :).  I am not happy for one minute that I ever had this disease...not one second...ever

One thing for sure...I have met the most amazing, fabulous, people over all of these years and many of them are gone ....and many more will go...and someday I will go way too soon I think...I hope not.

Those brave, incredible people...they taught me how to exist and live with joy in this life that I have now....could not have done this without them.  And more will come and teach me so much.  Thanks.

Sunday, February 10, 2013

How to Make a Payment Arrangement

Please see the prior post as well...they are connected.....and I will not repeat here what I said there.

1.  Take an honest look at your finances and your health.  I know this is hard to do in cancer or otherwise however you must.  Make a budget for everything even if it is in the negative.  You have to make a plan no matter what...some kind of written plan or you will never be really able to work your way out of this stuff.

2. If you will never pay let them no that as well however with honesty...

"I have stage....cancer....I will never be able to pay this bill due to...I may be declaring bankruptcy...I will decide this in the next 30 days...I will call you back when I decide...thanks good bye...

"Filing a judgement against me will do you no good as I have no funds at this time ...I have whatever disease...I will get back to you in 30 days to update on my financial arrangements if there are any that I can make...I am that ill."

3. If you are wanting to make an arrangement..."I am recovering from cancer.  I can pay you $10.00 per month right now until I have more of an idea of my recovery health and job wise.  I will send you $10 per month for the next 60 days and then we can talk again.  That is the best that I can do.  If you file a judgement against me while recovering from cancer it will not do anyone any good as I will have even less money.  I have full intention of paying this."      If you encounter a difficult rep ask ask for a supervisor and remind them that the call is being recorded and you would like a copy of it.

4.  Remember that a bill came form a hospital, etc...It can still be negotiated.....

more in next post


Saturday, February 9, 2013

How to Deal With Collection Calls

Sorry it took so long for me to get to this...I have been traveling.  Ideally it would best if you could make arrangements before bills go to collection...however we are all human so let's get started.

If your bill has gone to collection and you have been ignoring it chances are your credit has already been affected however you can recover....

1.  Always tell the truth...make clear, honest statements about how you are going to proceed or if you are going to proceed...including letting the company know if you are going to declare bankruptcy

2. Make sure you ask if the call is being recorded if they have not stated it....there is that little speech a real debt collector says in the beginning..."this is an attempt to collect a debt...etc"  You want the call to be recorded and you must make a record of the call in your log book....:) or where ever...Do not forget to get the name of the person you are speaking to and if they have an ID number as well....address of the company and name of supervisor in case you need to contact them yourself. 

3.  As always what is your goal in this conversation....
      a.   payment arragement?  
      b.  not paying at all ever etc?

Next post is about Payment Arrangements


Sunday, February 3, 2013

Forget and Remember Who You Are Always

This is about money. ..your life...everything.  Please stop mourning who you once were....and remember the strength and power you had when you had a healthier body...you are still in there.  This is perhaps the hardest part of cancer or any illness and it is related to money as well.  It is all connected.  You have to treat yourself as a whole person...all of you...

The first person to treat yourself with dignity, strength, and kindness is you....always.  Give yourself a little time each day to feel bad.....and then get on with it...

Be open to new experiences, people, and places always...it is not about the "bucket list"...it is about the "life list"...

More talk about money in previous posts and more to come....After doing this for over 11 years...I know this to be true...5 years of typing here...you can read....

Money Issues in Illness...Bankruptcy etc

There are two reasons that people avoid figuring out their financial situations....they are mental and physical issues.  If you are not able to deal with your money situation in a practical way...find someone practical and not too emotionally involved to help you.

It could be a friend, family member etc....a charitable organization..financial person...just make sure that they are honest and have your best interest at heart...Your gut level feelings are usually correct....if it does not feel right it probably is not...do not make major decisions alone....

Figure out your debits an credits....and see what your positive/negative is with your money...include everything...food...utility..etc.

I want to back track a little....every little step you take here will hopefully lead you to a better place...I have had myself many ups and downs financially in cancer ...this is not the way your life will be forever...everyday a new step...keep going :)

So now you have an exact number where you are....I know it might not be so good...

1.  Are you ever going back to your prior work?
2.  Are there there new avenues to earn money and how do I get there?
3.  Will I ever be able to pay this money back...at all ...ever? This is a very important question to think about that may lead you to discuss options with a bankruptcy attorney...debt forgiveness is an option.  However remember that the bills you get after the bankruptcy... you will be liable for.  Many creditors want to know your situation and if you write letters that you are in the midst of cancer treatment etc....they will give you more time..etc

However if you get harassed by phone people...report them....etc...

4.  Keep perfect notes on everything...dates and times of calls....always get the name of the person that you spoke to ...take notes on subject matter...request the phone call be recorded...this is important in case you need this info for later.

5.  Be nicely assertive...you just have cancer....you are still who you have always been...speak up and take care of yourself...This may sound ridiculous...however this is when the real you needs to step up....You may live a very long, long time !!!!!  :)  More later.




Saturday, February 2, 2013

How To Negotiate Medical Bills After Insurance Has Paid

This is dedicated to the folks at the Sarcoma Alliance where this blog has been running for years.  They give sarcoma patients money for second opinions at Sarcoma Centers so that we can live way longer :).

1.  Organize your bills...First...where they are from...by paper or excel sheet...whatever works for you
    a.  When the insurance info comes in regarding payment please match the insurance bill with the doctor/hospital bill and make sure insurance really paid...if not why not???  (that is another story)

2.  If we are talking hospital either go there in person and/or call on the phone...is there financial help available through charitable organizations....etc....

3.  All bills can be negotiated..All....First see if you can negotiate the bill down or away....Always ask for a supervisor or office manager...not just a phone rep....here is some verbage...

" Hi...this is Amy...I have my bills and I need to discuss them with you...this will take awhile...please...is this a good time?  If not please let me know when is....I have cancer and I am not working at present.  Please help me create a financial plan for this. 

(keep in mind that if your bills are so immense Bankruptcy is an option)  I can not advise on a blog however speaking to an attorney for an hour for free may help to decide) 

"Is there any part of this bill that can be forgiven?  I am not working at present and it may take me years to pay all of this.  If it can not be forgiven ...what discount and payment plan can we arrange?  I have been struggling with this disease for _____years and the medical bills will not be ending anytime soon.  I want to prepare properly for myself and my family.....I hope that you can help with this.

Hear the reaction and go from there....In this process I must tell you the need for honesty on the callers part....

Also If the insurance company is not paying on a bill ...find out why????  it may be just changing the insurance code will make them pay....this is a start......more later...