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.