Sunday, November 29, 2009

The Hug and other random thoughts

This holiday weekend was quite wonderful because I got to hug Sharon and several other leiomyosarcoma survivors.  But I must admit hugging Sharon was special.  Sharon and I have been corresponding via e mail for 8 years.  When she knew I had started conga drumming to help maintain my sanity during the early years of treatment and surgery she mailed me a little drum that I could take with me where ever I went.  I was so touched by that and I never forgot how she made a complete strangers day...me...I cried and banged that drum half the day...and much more as the years went on.

Sharon and I met many of the same people...just not each other.  And many of those people we had become so close to ....passed away as the years went on one by one.  So hugging Sharon was like hugging all those people that are gone and we are still here.  It was like thank God we are still here and please do not go anywhere anytime soon!!!!

These folks we have all met over the years are from the ACOR On line cancer support network...an extroadinary group of people supporting each other on line and sometimes meeting in person.  These folks are from all walks of life. I have met over the last 8 years about 100 people from all over the world.  Others have met more.  We all have or had leiomyosarcoma.  I had to mention this again.

That evening a group of us went downtown to the Japanese American Cultural and Community Center to The World Festival of Sacred Music.  It was fabulous and the company was fabulous.  I thought how honored I was to know all of these people and how I wish I had met them under different circumstances.  I still not happy I ever got cancer.  Cancer did not teach me a thing ...I already knew how tough I am.  I am honored, and fortunate to know all of these people.  LMS attacks such incredible people...must be a cancer of seeking only those with intelligence, charm, and strength!!! :)  More in the next blog....

Saturday, November 28, 2009

Our Healthcare System

I have been getting a lot of notes lately form other bloggers...especially healthcare and/or insurance bloggers asking me to post my opinion on our healthcare system.  This is my feeling on everything political...it's a mess.  If you have been reading my blog since the beginning you know my health has cost me much over these years between times not working and the cost of my own insurance...not just the monthy premiums but also paying for what insurance will not cover.  Those expenses have cost me more emotionally and mentally than my actual cancer battle.  It is one of the influences of me blogging here.  If you know what your insurance premiums are...that's great...do you know what everything costs should you become ill?  Take a look...it may astound you.

My feeling is that healthcare is a basic right of all americans...everyone should have it...of course the problem is that nothing is in black or white...most of life exists in that area of gray and trying to make things work...which is the real problem because we are so caught up in bull....  and lobbyists that nothing is ever really accomplished.

Most folks are influenced by what they watch on TV and do not take the time to really read and understand the implications of what is going on in our healthcare system.  I have been talking to doctors, nurses, hospital administrators, and other healthcare workers for over 8 years straight.  And I am in the insurance business.  No matter what the outcome of the next year things will still be a mess.  It does not matter if you are democrat, republican or chopped liver :)...our system needs a complete overhaul by people who will not be influenced by insurance lobbyists and other people sounding like idiots at town hall meetings.  That is my opinion on our healthcare system.

Here We Go....

This was that time.  Time when I have a full head of hair...time when I do not look sick at all.  Time when I do not feel all that sick...except at cetain moments...like everytime I eat.. I feel like not eating at all.  I do still love that morning coffee.

So here I am house and pet sitting here on the beach in beautiful California.  And it has been a beautiful week weather wise...sun shining everyday...and I am wondering...Am I in a huge surgery shortly or do I get to try this new drug "votrient"...Or do I do the surgery and then the drug?  That may make more sense...if there is any sense here at all. 

I have never been petrified about this cancer before....I am now.  I have no idea if this is really my year to get some order to my health or not....and then I think....this is ridiculous..there is no order ever...none at all.  Everyday we really never know...life sometimes changes drastically in a second.

After 8 years of struggling with this on and off and the last 3 years without a real break ...I must admit to really needing an extended break...a year or 2 would be nice.  Time enough to get a lot of work done and maybe take a trip (a not come back :))..time enough to see my girls turn 21..time enough to not think too seriously and be a little more "normal" for awhile.

Time enough to give my kids a break and have them not worry about me and themselves.  It's like having a split personality ..you go to work and do your thing everyday..you see people and enjoy...and in those moments when the day is not busy, you start to think and the visions creep in...a memory..a feeling of medical times gone by...so many memeories stored away and you fight to not let them out....a look on your kids faces.....feeling tremendous physical pain...ports, pics and IVs...walking the hospital hallways endlessly because you know the more you walk the earlier you can get yourself out of there.  I think there are track marks and my foot prints that are impossible to remove from those halls.  They are the marks of determination to somehow find a way to keep on living ....with sanity, quality, and some parts of my body intact :)....parts enough to have a good quality of life and fun!!!  Some fun!!!

Tuesday, November 24, 2009

Reflections

A co- worker of mine said Thanksgiving is a good time to reflect.  Reflect about what?  How much should you actually reflect about the past?  Should you be more thinking about the future?  How do you do that when you are battling cancer?  Is the past or future too painful to think about or does it give you hope?  Do you wonder if this is your last Thanksgiving?  Or do you know and are you trying to make peace with that?
These are lots of questions I know and very difficult to answer...if you can answer them at all.  And the hard part is that there are no real answers...just like my cancer treatment...there are no real answers.  That is the most difficult part to reflect on and that's why these questions cannot be answered.

I have no clue what the next few months will bring ....after my next scan I will know more in a few weeks :).  That's the part to actually reflect upon...how to deal when there are no real answers...just waiting, trying new treatments, hoping, and keeping very busy so that you do not reflect too much...even if you are staying at the beach for a week!  :)

Saturday, November 21, 2009

Thanksgiving

This Thanksgiving I am particulary thankful that I am not in the hospital and/or recovering from surgery at the moment.  Chemo is not working out so well as I am not tolerating enough of a dose...so we shall see.  I am house sitting and pet sitting for a friend on the beach beginning Monday which I am also very thankful for...that I may walk every morning...even in the rain...(cancer patients do crazy things because we can :)) on the beach and breath in that fabulous air.  I also am thankful for some quality time with friends and family.

I also wonder a lot.  I worry a little. I wonder and worry what the next 6 months will hold in store for me.  I wonder if another surgery is on the horizon...if the next chemo will work..If I get a life this year or not.

I would like to include here how proud I am of my daughters.  They are also my heroes.  In spite of a Mom battling cancer and their Dad that passed away they keep going...going to college, and moving their lives forward...just like I have taught them all of these years.

I wish everyone who reads this blog a healthy and happy holiday season.  My this year bring you a cure and peace in your life.  May tears be replaced by laughter and lonliness be replaced by love.

Tuesday, November 17, 2009

The Little Things In Life

It's not enough that you have "chronic cancer" , doing chemo, and trying to get back to work...in the same day my main computer contracted a virus, as well as its' owner...I have the flu/bronchitis and after my computer went nuts...I went to the emergency room.  UGH!!!  LOL OMG..I would use extreme profanity however I do not think I can do this on this blog!!!

I will say that having cancer and doing chemo does get you in and out of the emergency room quickly...:) one of the many perks :) of this illness!  The medical staff there has no idea of the cancer you have...they barely can spell leiomyosarcoma.....we joke about the fact and we move on.  They were wonderful though...it's ok ..I am used to few people knowing what I have.

I am ending here because I am so tired today...more in the days to come.

Wednesday, November 11, 2009

Finding God and the Power of Prayer

I have never been a religious person.   I do believe in God.  I am Jewish culturally more than following any strict rules. I do love sitting in Temple especially when I am by myself to just sit and meditate. One of my favorite places is the Chapel at Cedar Sinai Medical Center here in Los Angeles. I often write words of hope in the prayer book there, regarding family and friends.

I do believe we all have the same God and I do not care who it is...it is the same ..whether Jewish, Christian, Muslim, Buddist, Hindu..God is God...and if you are listening to me today another 20 years at least would be greatly appreciated! :)

I feel guilty thinking about God sometimes because in my 20's,30', and early 40's (I was diagnosed at 44) I was too busy being invinceable to think about what or who God really is.  I was just living my life. But since cancer I have seen too many strange things happen to not think there is God out there.

I have to admit I do not like God all the time because there are a couple of things I do not understand....like why so many young people must die ...what seems like,  before they ever got to live.  Or why there is sometimes so much unbearable pain. (hope I spelled that right!)

But then there are those moments like the time my Mom was dying.. while I was in the hospital recovering from surgery.  I could not be with her and my heart was breaking.  The nurse by her bedside called me ..she said my Mom had woken up asking for me.  She put her on the phone and we said "I love you and goodbye".  I got to tell her I was doing well.  Five minutes later she passed away.  She was waiting for me.  I think God had to have been there at that moment.

I think prayer is fabulous...the more the better and I do not care from who.  So let us all keep prayers for our family and friends great health as we head into the holiday season.

The Operating Room

I have been in this type of room many times at this point!  I must say it is a very strange experience as a fully awake patient being wheeled in....Most folks usually get something to relax them before getting wheeled in so the whole thing is a blur...the last couple of times I did not and it was a little scary and not.

It is always freezing to protect against germs...it's not a hotel room...you can get a blanket however you will not get a temperature change or a chocolate on your pillow :)..there is no pillow. LOL...There is a lot of metal stuff, wires and machines.  It is quite fascinating actually.  There are a lot of arm cushions to get IV's and have your blood pressure checked.  There are a lot of comfy sheets ..hopefully none of them over your head (little humor).

I listen to my wonderful surgeon getting everyone and everything together..there is singing and discussions about sports.  It relaxes everyone including me.  I see a couple of nurses, doctors...finally someone says .."arent't you going to put her to sleep before we do this?"  And I laugh..then before I know it I am starting to wake up in recovery...the first part of the day was much easier. 

Use the Parts of Your Body that Work!

My last abdominal surgery was July 7th.  I am starting to think about serious exercise...not just walking.  Time to get those core muscles back in shape ...LOL...after 5 surgeries like this and over 20 tumors removed over the years...have you seen my stomach?  How funny is that!

While most people are doing this just to look good..my reasoning is quite different than the average person.  If I need yet another surgery ....how can I assist my body on the healing process?  My muscles are a mess..My stomach looks like it has been drivin over by a truck,,,like the cartoon where you lay flat and all of a sudden  pop back up in some crazy deformed shape!!!  That's me!!  And proud of it.

So I am now in the process of designing an exercise program for myself, while doing oral chemo, and making sure I do not kill myself.  Walking is great...power walking ...until I just can't breathe anymore....
Stretching and Tai Chi.  There are free classes for this at the Wellness Commmunity or other types of cancer support centers in your area.  Chi Gong...is great too...This help once when I was quite constipated ...doing chemo we all know what that can feel like...LOL...sorry to mention however I am trying to help people here.

Conga Drumming!!!!  Are you angry, sad and need to express it so that you do not end up in a mental institution???  Drumming is the best!  You do not have to know what you are doing at all and it feels great to drum in circles with others!  Find a circle in your area and make new friends! 

If you are in a wheelchair, use a walker, move the parts of your body that work.  All the studies show that moderate exercise helps fight cancer and gives you a better quality of life...so move.

Lastly...my tase buds still work and thank God for that...Eat...eat great food with lots of nutrients...that will make you strong..think out of the box to try new things.  Thank heaven for dark chocolate truffles!!

If your hearing still works listen to fabulous music everyday...all these things help. Also...you emotions are going crazy...let them come out...mourn the person that you were before this...let that person go and find yourself on the new rode of discovering the new you, so you can fight this shitty disease. ...and keep fighting.  You may live much longer than you ever thought.  I am.

Thursday, November 5, 2009

Careers in Cancerland/The Mind Body Disconnect.

Many people have made new and fabulous careers after recovering and/or living with cancer.  They have made lots of money as well. To those folks that tell me either in book form or in lectures that I have cancer because it is my own fault...I say go to hell and how dare you. 

No one has fought harder to live than the hundreds of people that I have met over the years with various forms of cancer.  All of them brilliant, wonderful talented people.  They sub consciously or consciously did not want to die.  They fought as hard as they could with both conventional and unconventional treatments.  Many of them lived many, many years, and some are still here.  How dare you say it is our fault.

These folks profiting off the suffering of others, make millions in book deals, charge thousands of dollars to take women on cruises and sit through ridiculous lectures...etc.  All in the name of "living your best life". I take issue with these few people.

Understand that I am all for healing.  Acupuncture, Tai Chi, Chi Gong...vitamins...conga drumming...going about your day as best you can...the power of the mind...exercising as best you can...I am all for all of this...but do not tell me that I have cancer because it is my fault....that I did something in my life to have this.   And If I do not do certain crazy things that I will die.  And all the other things that go along with that.  I have done everything one can do all of these almost 9 years.

More on the mind body disconnect later.

Normal is different all the time

Going in and out of treatment and surgery on a consistant basis is just crazy.  This is especially true if you are single, financially responsible for yourself, and you own your own business.  I have not worked for anyone since I was in my 20's. 

I have done a few different careers in my life however the career I have liked the best and made the least money due to illness is talking to people about life and long term care insurance.  I started this business in 2002 and did wonderfully for awhile however cancer got the best of me and I have not really worked since January of 2007.  I just started working again. 

I have had to restructure my business as I will never work alone again.  I have a fabulous partner helping me.  I have just started running all over again and seeing people.  It feels very strange..although I am enjoying!.,,
As I see old and new clients and reconnect with a lot of folks who refer business to me, it has been interesting as I have to explain where I have been.  And I really do tell people where I have been the last couple few years...

3 surgeries, radiation, chemos...many tumors removed and on chemo as we speak.  And I do not even speak of the years before..(I have been doing this since 2001) The look of shock on their faces ...I am shocked as I listen myself.  I also wonder sometimes how much longer I get to be sort of a regular person...meaning go to work...see people...and just enjoy daily activities...I fight for that luxury of just enjoying....what most people think is normal.

I let my clients know that at any moment, I may indeed disappear again for an extended period of time and that is why I have a partner.  But I do not want to disappear!!  The first time I went in my office I felt like an alien from another planet.  It seemed like there was a totally different person that used to work there...someone much more care free and easy...I get tired much more easily now. I am fighting each day to stay here as long as I can and in decent enough shape, so I can have a life. :)  I really want that life.

I so appreciate those folks that treat me like regular person.  They really want to know how I am and how they can help me.  The people that run the other way...I just smile and let them go.  I am fortunate that I look healthy.  Who knows how long it will last.

I do not have the luxury of being cared for by another person...I have a friend in support group who complains from time to time about how his family doesn't let him do enough for himself ..I would like to be that person for a couple days....do my crazy paperwork and make a few medical insurance phone calls...go the market...etc.  I have plenty of folks around me when things get crazy...an emergency...or a surgery...but no one around on a daily basis..it's interesting when you do stuff all by yourself most of the time.

When you have a chronic illness friends do not realize the importance of a phone call just to say hello and do you need anything...once in awhile.  They wait for you to call them and ask...and  at times that is very difficult.  If you are able to do everything by yourself at the moment, they feel no need to call. 

So as you discover a new norm in life each time you recover you have to have a plan that will work for your life at the moment....especially if you are single.  Be very vocal about what you need from friends and family..especially if you live alone.  Have a couple of medical buddies.  Plan ahead financially as best you can.  Anticipate good times and bad.  Remember..."We Plan...God Laughs"