Monday, December 28, 2009

The Twelve Days of ......

This is not of Christmas.  Christmas is over and reality is setting in.  I have 12 days until my next scans.  If I am stable or things have shrunk because of the new meds I am taking...then I get a great break from surgery that I am so hoping for.  I would not be checked again for about 3 months. I have not had an extended break from anything in 3 years. I need this break from cancer.

I am also not happy with our goverment and this new health care plan.  You all should take the time to read it.  Baby Boomer generation read this ....you will be growing old living with it. I do not think you will like this.  I will discuss more in future blogs.

This time of year is always crazy since it is also the anniversary of my ex husband's death  just three years ago.  I went to visit his grave and that of my father as well who is buried close by.  We look for comfort where there is none I think.  You stand there and look down at the headstone ...maybe expecting a sign that the person who passed knows that you are there, but there is none.  I have this thing I do of  kneeling down and patting the grave...like I am patting the person. I feel compelled to to do this..it as close as I can get.   It is as close as I want to get as far as being in the ground goes.

Sometimes I feel like someone is watching out for me.  There was the time I really needed some extra cash for the month and I found $20.00 just laying on the floor in the store.  And the time I was on the train and no one took my ticket ( it is good for one year).  Then there was the time I had just gone back to work and clients seemed to be popping up out of no where.  Usually I have to find them. 

I can not help feeling grateful, happy, and very sad at the same time.  It is the emotional roller coaster of having a serious life threatening illness. One minute you are sitting with friends having dinner and you forget for a little while what is going on...and then you leave after a wonderful evening, get into your car and wonder where you will be next year at this time.  

I know why people go crazy.  I feel fortunate that the really crazy gene is not in my head.  But there are those moments after living with this disease for over 8 years that I feel quite tortured.  I can not describe the feeling but you know it if you are experiencing it.  I see it with other long time cancer patients that are struggling so with illness and perhaps the very real threat of death.

The other side of the coin is that I still have such tremendous hope and faith.  It is the only thing that keeps my sanity on a daily basis.  I would like to believe that I have many more years here on this earth.  I will keep working on this.  There is so much I would like to accomplish.

I try not to think too much as well.  I try just to keep going...work...have fun with family and friends..exercise and scream as loud as I can once per day...:)..preferably while driving with the windows rolled up.

Sunday, December 20, 2009

Try and step out of your misery

My friend Dr Doreen Kossove always told me she liked helping others because it stopped her from thinking about herself and her own situation.  She passed away from the same type of cancer as I have.  I agree with her.  One of the reasons I try and help as many people as I can is because it just makes me feel good and allows me to stop thinking about my own situation.  It is one of the reasons I have been a part of and help facilitate support groups for people going through sarcomas.  Every time I am there I learn something about myself and the folks I am with.  Many of them are no longer here.

I am always interested in folks that say things like,"You have no idea what I am going through, or no one has been through what I have".  For some that is true.  There are some that have been in such horrific situations that no one really has been through what you have and we no not how it feels.  However if we are talking about going through a serious illness, loosing a loved one to illness, being a caretaker, paying huge healthcare costs.. others know how you feel.  They are feeling it too.

You can not help someone until they decide to help themselves.  This is true in everything.  So if you are feeling so low this holiday season and beyond..reach out and help someone.  You will see your self in them and be able to help yourself....I hope.

Saturday, December 19, 2009

Off Blog until first week in January

Dear All,

I am having lots of fun with my daughters until they go back to college.  I will be posting once again in January 2010.  Happy, Healthy New Year to you all.

My Best,
Amy

Pain

I have been thinking a lot lately about physical pain and cancer.  I have never had pain before on a consistent basis and I have to admit that I am not used to it.  I have had huge pain ..for example when I had knee surgery, gave birth to twins, through 5 abdominal surgeries. :)...argh!  However I always knew that the pain would lessen and I would be pain free once again.

Chronic and increasing pain is very different.  You have to learn how not to let it ruin your day and change who you are yet again.  You must figure out exactly how much of that pain you will accept and not give in to it and yet there are times you are just so exhausted.

Pain is our bodies warning system to let us know that something is very wrong. I get the message and I am aware :)...now enough!  In all of these over 8 years of cancer I have never had pain from a tumor.  The 3.7 centimeter tumor by my kidney is sending me a huge message.

I am working on it.  I know you are there ...now enough is enough!

Tuesday, December 15, 2009

It's the Holidays

It is the holiday season and this is stressful for many in the midst of illness and financial difficulties.  As in an earlier blog it is important to remember and not dwell on things past.  This is sometimes a very difficult thing to do. 

Tomorrow is the three year anniversary of my daughters' Dad's death.  He had a heart attack and passed away in the middle of the night.  He was the best Dad and adored his daughters.  They miss him terribly.  I miss him too.  I can still hear his voice and his laugh.  I remember that he had great legs.  In much younger and healthier days for all of us, I remember that he would out walk the dog and have to carry her up the hill in his arms.  He enjoyed being able to do that.  He always smiled as he carried her. 

I still hear my Mom's, Dad's and many friends voices as well.  Remembering the sounds of their voices can be very comforting and sometimes torturing...

I can not bring back the past however I can choose to focus on the times and things that made me strong and who I am today....with the hope that I will take that strength and be able to build more of a life in good health, in the future.  My friend Charlie always says "Hope & Faith".  Good health for us all.

I will choose hope and faith this season and I wish that you will too. 

Saturday, December 12, 2009

The Health Care Reform Bill

If I was healthy enough and could afford the trip, I would stand in front of the Congressional offices in Washington and ask..."What the hell is going on in there?"...I was watching one of the news programs the other day talking about all of the special money going out to pet projects of Congress.  They pass this stuff at the end of every year...The ones I heard that evening were

1.  How to teach surgery in outer space ($750,000)?
2.  How to grow certain foods in a controlled environment..also about the same amount of money..

The list is endless...so much wasted money on ridiculous things!!!  I was waiting for the $10,000 toilets but that was not this year.

There is no public option for health insurance ...the insurance company lobbyists (about 6 to every Congress person if I am correct) saw to that.  There is something about buying into Medicare early and I am not sure how that will work however that still does not help those American citizens who may have pre existing conditions and can not get insurance through their jobs who are under 55.

Have you ever researched Congress and taken a look at their health insurance options?  I bet it is better than yours will ever be.  I am very disappointed in what is going on in Congress with this bill.  I am not sure it will be any different than the craziness that is happening right now.

I guess they could work every weekend from now until the end of time and I wonder if a decent plan will ever come out of these meetings.  I doubt it.

The Outrage of Cancer

Let's be honest.  Cancer sucks.  Especially if it makes you sick for a very long time and may kill you.  I have been close to many survivors over the years that have perished due to this disgusting disease.  Some folks I have visited within a few days before death. 

We try everything ...countless surgeries, drugs and radiation..for some it saves their lives for a long time ...for others it just doesn't work. These people are wives, husbands, sons, daughters, parents, grandparents, friends and lovers.  They are interesting, fabulous, gorgeous, and ruined by this horrible disease.

For those folks that have huge stories of survival and bring hope and faith to others I applaud you this holiday season. We always need to hear about people like you.  I am not sure this drug will work for me or not.  I pray to all Gods everyday that it will :).  Or else it is another huge surgery. 

I already have a huge story but I would not mind an even bigger one if it means that I am here :).  I wish you all who read my blog a healthy, exciting 2010.  Thanks for reading.  My goal is to get to 200 entries.  I will have to drive and shower a lot more as this is where most of the ideas come to me.  Then I have to remember them long enough to write them down...Thanks!

Thursday, December 10, 2009

Hair

I feel obligated to talk about hair.  It is such a huge cancer thing when chemo comes along.  The first time my hair came out I was taking it out in clumps and placing it in a styrofoam cup in the chemo area.  My dear friend was watching and to this day I am not quite sure how she felt.

I know how I felt.  The first time it was not as bad as I thought it would be.  I did not feel ugly as mush as very cold.  I do not know how guys like being bald all the time.  It is feezing in the winter.  I hate wearing hats.  With the hat on it is too hot.  There is just no comfort really.

I also hate wigs because it is like wearing a big rubber band around your head.  They are tight!  In my 20's and thirties, I would walk through the door after working all day and immediately rip off my bra and stockings...:)..in my forties and fifties it was either the wig or the hat!  Yuk!

It is difficult to grow hair back.  My hair always grows back white. That is the part I do not like.  I hate my hair white.  All the women tell me how wonderful I look with white hair...but do you see them having their hair white?  I do not think so!  Every 5 weeks getting it colored ...women would go without food to color their hair.  This is for sure :)

If you haven't seen the Chris Rock movie about African American Women and their hair you really must.  It is a riot.  To some women hair is everything!!

The second time I lost my hair it was a big thing.  It was not the hair I cared about but what it represented...the fact that I was still dealing with cancer in such a big way.  So now I am taking this brand new drug and I get to keep my hair for now and hopefully my life in the long run as well.

I know the loss of hair to some people is a huge thing.  It represents beauty, health, and youth.  I would be Ok without it, if the rest of my body could be left alone for a long time.  That would be ok with me. My head is nice and round.  :)

Sunday, December 6, 2009

Pazopanib/Congress

Did you ever wonder who names these new drugs?  Yesterday I started taking pazopanib.  This is a brand new drug by Glaxo Smith Klein. This is an anti-angiogensis drug.  It is designed to destroy the blood vessels that supply the tumor therefore ..killing it and saving me.  I hope this works. I could use a big miracle right now. 

The side effects range anywhere from just being tired all the way to the damaging of your heart and liver.  I have been experiencing a slight kind of drunk feeling so far.  I would like it if that would continue for the next 4 weeks until I get scanned once again....it may make the next weeks easier :)...I also have not been drunk since I was in my twenties so it may be fun!!!  If my writings become a bit strange, please let me know. :)

Pazopanib has shown good results for kidney cancer and encouraging results for my kind of cancer.  So now I have the honor of being the guinea pig and seeing if this will work for others like myself.  We could use a good drug as there are not many options after surgery for people like me. 

I saw on the news today that Congress was working the "weekend" to get their healthcare bill going...why is it such a big deal when Congress works on the weekend?  What the hell was going on all the years before?  We elect them and I do believe that they are many years late in doing anything....they should be working weekends!!!  Where has the effort been all of these years and why do people wait for a crisis before they get anything done!?

As far as I am concerned there is absolutely nothing "special" about Congress working the weekend!  Do it more often.  And work more in cooperation. 

Skydiving

My daughters jumped out of a plane a couple of weeks ago.  That was fabulous..they went skydiving and I got to see it on video.  They looked so beautiful going down.  They were not afraid and they described it as such an "awesome" feeling.  It was awesome for me too. 

I was sitting with a friend last week and this person said to me that if indeed I died way too young that he/she  would want to kill himself/herself.  I was quite stunned and sad by this comment. I fight so hard to live and you are just willing to throw it all away. 

I have joy in life.  In my worst moments through the death of both my parents, my ex husband, and countless friends, I have decided to want to stay here as long as I can, as long as I am able to care for myself as I do not want to be a burden to anyone.

I do not need much to make me happy.  I have my daughters, great friends, and for the most part I still have a great life...  I enjoy very simple things like looking at a full moon and I still have yet to get to the beach in the snow again, which I used to do when I lived in New York.

I do miss my physical strength. I am working on that. I am not sure if inner happiness is something you are born with or if it is developed over a period of years.  I have always enjoyed being here on this earth although some days more than others :).

I am convinced that if everyone dear to me was gone and I was left here in decent shape that I would continue to do all the things that I enjoy and then some.  I would still try new things and develop new friendships.  I love being here.  I know I would be distraught and a bit crazy over the loss however I would honor their memories by continuing.  We have seen evidence of this in those surviving the "Holocaust" and other unfathomable tragedies.

To this person who may value life so little how dare you say this to me.  It did not make me feel good that you have so little joy in being here. It did not make me feel so loved.  It made me sad that you hold so much life in the palms of your hands and you would be willing to just throw it away.  I am sad for you.  I wish I could help you change the way you feel. 

Why would I address this here?  If you feel this way there must be countless others that feel the same.  Maybe it is not too late to seek out some joy in life...to rejoice in your own health and well being.  If  I had one wish in life it would just be for good health.  The rest I can find on my own.

Thursday, December 3, 2009

Scans, MRI's and Outer Space

Every three months or so I go for either a CTscan or MRI of the chest,abdomen, and pelvis.  I have been doing this since 2001.  I imagine now I have had enough radiation to light up the tallest building and there must be enough film of my insides to make a small documentry.  We could call it, "Invasion of the Body Snatchers:,  but I believe that title has been used already. :) 

I imagine if we were actually invaded by others from outer space, there would be no need to disect a human body as I could just pass along my films. :)  Going for scan or MRI is a fascinationg experience.  The way the day goes all depends on who sticks you with the needle and IV.  Fortunately the other evening I had the best stick from Angelo that I have ever had.  I told him I would marry him and he said I would have to stand in line as everyone loves him.  It does not matter how many surgeries you have had.  An easy stick is everything.

During the 45 minute MRI in the long tube I decided I neede to go into the "zone".  The zone is the place you go to in your head so you can stand the noise, and not move in the tube.  I was learning how to fly fish in my head that night.  I was in Montana going up and down the river.  When I finished I told the tech that I hope the rest of his evening was as easy as me.  An MRI machine can make you crazy....if you let it.

The CT scans are sometimes awful because you have to drink the contrast...I have lost that stuff more than once and here in this test, is where all the radiation is. With all of this being said it is very important to be checked on schedule.  It has saved my life all of these years.

How not to Go Crazy from Cancer...really crazy

Have there been times in your life after years of illness that you wonder who you are?  Really wonder who you are?  Do you think about exactly how much you can possibly go through before you are just finished?  Did you ever really wonder where the term "rest in peace" comes from?  Rest in peace actually comes from the fact that you possibly suffered so much in the last few months of your life that indeed...finally you are "resting in peace"...where ever that "peace" is. :)

I am not ready for that peace part however I have a feeling I will know when it comes.  It just seems like the last few years with a some fun in between and a lot of work..I know exactly who I am ...I am just finding it difficult to keep doing all of this medical stuff all the time.

I am not really sure about having surgery again so fast.  The thought of trying this new drug is very appealing to me.  I am so tired and this surgery would be so huge.  After the last 2 surgeries this year things grew back very quickly...maybe this drug is a little miracle.  You never know and that is the problem.

If I try the drug and it does not work... my next surgery ...if I am still able to have it becomes that much more huge!!  How sad when not too many more options exist.  Sounds crazy but I never really thought I would be in this position...with all this cancer all of these years..I thought it would never really be out of control.  I feel out of control.  But maybe...just maybe I will get a little control back for awhile. :)

Wednesday, December 2, 2009

The Fight

I saw my Sarcoma specialist today and will see the surgeon on Friday.  I have had some tumor growth...so here is the dilemma with rare cancers where there is no right answer.  Do I have have another huge surgery (that would be the the third huge surgery this year..March, July, and now December) or do I try the new drug called votrient...see how it goes and if it does not work...then rush into a bigger surgery?!?!

This would be my 6th abdominal surgery since 2001.  Lets not forget 4 chemos and radiation.  I also just found out today that I have a fractured rib ...probably as a result of early osteoperosis due to all of this crap all of these years.  This is also inclusive of a collasped lung and lots of scar tissue in my body.  My body is just tired.

But I think I have one more surgery left in me.  And then I will still have the drug to try with less disease...or maybe cancer will stay away for awhile and give me that much needed break.  My friend Warren said to me the other evening, "If they take my legs I will be in my wheelchair playing raquetball. I will crawl if I have too.  If they take my arms, I will use my nose and ears.."  He said it with such force.  He meant it.  I am going have to be like Warren for the month of December. 

This surgery may take a kidney and gall bladder with it.  I also have an area of question in my armpit.  They will remove that as well.  It seems like a lot to do.  I always said I would not be one of those people getting so chopped up...but the funny thing is when you see me...you would never know how sick I am.  I hope in January...I still have that look :). 

After over 8 years of fighting this disease this may possibly be my last surgery..over 25 tumors later......after this maybe only drugs to try to keep this all at bay.  Maybe I will be one of those "miracles"...I hope so.

Cobra/Health Insurance/ARGH!!!!!!

If you have been a consistant reader of my blog you know that I am on cobra right now due to the fact that I am not working enough at my company to maintain my regular health insurance.  My cobra has increased from $1587 per month to almost $1900 at the first of the year....Can you believe this?  If I can maintain my health in 2010 and get back on my regular benefits my cost will be cut in half....about $950 for myself and my kids...almost $1900 per month plus paying for all the cost that insurance does not cover.  I need a PPO because I have a rare cancer and I need things when I need them.  It has kept me alive over 8 years.  Should I go broke as an American citizen because of the cost of medical care in this country?

I have not much more to say today  as I am so angry.  It is time to overhaul our health insurance system.  If there is no public option to compete against the insurance companies..you would have a choice...what do you suggest?  And trust me ...medicare needs an overhaul as well due to massive fraud to the tune of billions of dollars...however where would our seniors be without it?  It is often said that a community is judged by not how we treat our children....but how we treat our elderly..

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"

Wednesday, October 28, 2009

Perception

Hi Everyone,

Todays writing is dedicated to Dr Tessa Warshaw..my dear friend who gave me the idea for today's blog based on a breakfast conversation we had today.  Thanks! 

I love writing this blog.  It helps me and others I hope.  However as I write about "chronic cancer" and my life I am finding many different reactions as I go out in public. Yes...I have a very rare cancer and it will be a part of my life forever...whether I live one or 50 more years it will always be the "elephant" in the room. 

Some folks know exactly what to say to me...others have no clue and that is ok.  I want no special treatment (unless I am hospitalized or disabled..which I am not at the moment).  I have been dealing with cancer on and off (mostly on lately) for over 8 years.  I know how to deal with my illness at this point.  I do not like it:)..but I do it everyday.

Looking at me you would never know what is going on.  I look like the picture of health at the moment.  I have a full head of hair...I walk and exercise. I am ok with you asking me how I really am.  I will tell you.  I am not sensitive about it.  If you want to know what you can do for me, it would just be to ask...is there anything I can do for you?  If there is, I might tell you..if I do not tell you, please ask me at another time when I might really need something.  The worst thing you can do is not call or ask at all.  If you do not call at all, I understand.  Everyone is wired differently and can only do what they are capable of doing.

I am still intersted in helping you as well.  Helping others makes me feel good.  It takes my mind off myself.  I am still interested in your life and what is important  to you.  I am still your friend and/family member.

I am back at work.  Do not think having over 5 abdominal surgeries, 4 chemos, radiation, financial issues due to illness is going to keep me from having a life :)...I am still here and doing my thing.  Understand that.  I have my good and bad days however anyone that really knows me understands that I do my thing as best I can everyday and expect that from you as well.

So when you see me either at work or play.  I am still me. I hate cancer 100% of the time however it has taught me much over the years.  I would rather have learned this stuff in a different way.  What I learned is perhaps for the next blog.  Just be open with me as I will be with you.  Do not perceive me as a just a person with cancer.  Myself and fellow survivors are so much more than that.

Monday, October 26, 2009

I Feel Like an Egg

Hi Everyone,

I have hit that bump in the road.  I feel like an egg right before it breaks open and leaks everywhere.  Its got cracks everywhere and you are wondering if it will make to the stove so you can cook it, if it is even still good or if you should just toss it in the trash!!!  Or down the garbage disposal :).  It's good to get like this every so often because if you didn't the egg might just burst while you are hard boiling it...and you know how that goes...the stuff oozes out of the cracks and cooks in the water and makes a big mess.  I can be a cracked egg however I do not want to burst or ooz, because an egg like that never gets itself back together...especially when trashed :).

I am really hating my life today however I know I will get over it in a day or so and especially after telling the world this. I wanted to express it because it is good to feel this way every so often.  It forces me to think about (in the midst of cancer treatment) what I might do to make things better.  I will make things better.  In the next blog I will talk about accountability and control....LOL

My best,
Amy

Wednesday, October 21, 2009

Signs from God or Gifts of Time

This is been an interesting year as I have had the gift of my very special friends visitng me from all over the place. These are friends I have had for over 40 years. I am 52...childhood friends.  My daughter said to me the other day how special it is to have friends like these folks.  I would have to agree. I love these friends for so many different reasons.  However since doing cancer one big reason stands out.  I look at these few people and see my self as a kid again..sure we have grown up and relate on many different levels but these are the folks that know all the stupid things about you..they are part of the legacy that you would like to leave your kids.  They can tell people things about you that no one else would ever know.  They are some of the the folks you want to keep in touch with your kids just in case you are not around.  They can talk about you, your parents, and your childhood like no one else can.

Since I have had cancer for two years straight everyone seems to be rushing out here :).  I am no where near death's door.  I work, play..to look at me you would never know I have cancer.  I just get tired from the chemo pills I am presently taking. And every so often I worry a little about the future.

One of the thoughts I have had and seen with many folks are the gifts you get before you leave this earth...the gifts of very special things happening before you go.  People you have not seen in years...just pop up...you finally get that trip you have been wanting since you were born.  You find something you have been looking for ...for years.  It could be just a very special phone conversation or just someone important saying they love you.  I could be crazy...but too many special things happening to me in one year make me nervous!!!

Thursday, October 8, 2009

Thoughts on Dying

After battling this disease since 2001 and quite aggressively the last 2 years, I have to talk about dying.  I am bringing it up today because I have a dear friend really fighting for her life.  She has done everything possible to survive but this nasty cancer is getting the best of her.  She has been fighting leiomyosarcoma since 2005.  She is one of my many heroes who keeps on going against all odds.  Whatever religion you believe please pray for her today.

I do not want to die.  But I think about it often enough. Dying in your 80's or 90's when you have had a full life is one thing.  It is sad but honestly who wants to be here longer than that if you are not healthy?  Dying as a young person from a terrible disease way before your time is another story all together.

I get annoyed at people who say do this or that and you will live ..or live longer!  Drink this crazy drink...take this vitamin..drink more coffee..less coffee..eat this...do that.  I have done everything...my friends who are no longer here...they did everything they could.  Was it just their time and there was nothing they could do?  Who knows?

I think it is Ok to be prepared logically for death just in case....because emotionally you can not really ever prepare.  If you have certain items to pass on to people ..prepare for that..if there are things you want to say either say it or write it down so they can read it when you are not here. We discussed wills, etc in past writings.  Prepare everything you can because your family will be grieving enough.

I think about death long enough to prepare and short enough, to get angry enough, to fight harder to stay here.  I am not sure I will win the war but I am still able to fight the battles! Keep fighting the battles one day at a time.  They may add up to long periods of being disease free!  And then you get to live a very long time!

Wednesday, October 7, 2009

I Got To Keep My Eyelashes

I read that Farah Fawcett was offered chemo first and did radiation instead just so she could keep her hair for a longer period of time.  I do not know if this is really true or not.  If it is true..is that crazy?  I would say yes...however I know from talking to many other cancer people that the hair is so important!!  And so many other issues concerning the way we look as well. 

I was never much into my hair...I was Ok with it or without it.  I do miss my very youthful looks.. and I had them in my 40's...all muscles..running, roller skating ( not blading...skating :))..swimming...I was doing it all.  I had no scars..I was a size 4, had a great head of hair, and had really long eyelashes..:)...Many people thought that I was in my 30's.

I was first diagnosed at 44 years young.  I am now 52.  From the chest down to my vagina it looks like one huge happy face complete with eyes and a smile at the bottom.  After my last chemo I developed a new skin disorder where a blister forms for no reason..pops...goes away and leaves red mark in the end.  My legs are now dotted in red. 

My Dad in his 70's used to look in the mirror and say "I do not know who that is.  That is not the person I remember!"  I do the same thing now.  I look every so often at this person and wonder how all this happened so quickly.  My real hair that I have now is white.  I color it :).  It used to be straight.  Now it is curly.  I really do not care about my hair.  I have lost it and grown it back twice.

Flexibility and adapting to change again is huge in this case.  You have to find a way to accept the "new" you every single time another surgery or chemo pops up.  And the change happens quickly.  It is not because you have aged and aging happens slowly.  In surgery, chemo, and radiation, change to your body happens almost immediately.   You never know what that change will be.

The other day I was volunteering at a fundraiser and sat down to dinner.  It was a golf tournament.  A gentleman sits down next to me for dinner with a full plate of steak, vegetables, potatoes, and a scotch on the rocks.  After consuming his entire meal he then eats chocolate cake and coffee for dessert....he is 86 years young and just finished 18 holes of golf!!! How jealous was I?!?!  I am 52 years old and can not even eat a salad!! Nor could I get through 18 holes of golf!

I am still fortunate compared to other folks I know.  I lack the physical the strength I once had.  Naked I could connect the dots :).  But my hair is thick and I can still walk a few miles.  There is only one part of my body I am still vain about.  It is my eyes.   I have big blue eyes and long eyelashes.  I thought I would never grow my eyelashes back.  However, there are little gifts that I appreciate along the way.  One of those gifts is no matter what, my eyelashes always grow back.  I am always thankful for that.  I got to keep my eyelashes.

Find some little something about your self everyday that you like. Appreciate yourself.  No matter what you look like...someone always looks better or worse...even those that are not sick.

Sunday, October 4, 2009

Confidence in Your Treatment Decisions

Sometimes when you have cancer there is no absolute right choice for treatment.  There are choices.  Should you do surgery first..chemo..or radiation?  What do you do?  How do you make a choice?  Can you make a choice without regrets?

I know I talked about regrets before and how damaging they can be.  Develop a process for yourself that works in making treatment decisions where you will have no long term regrets. This is my process for doing this...

I first look at statistics and other cases similar to mine and see what they have done.  I look at what the sort of "norm" is for leiomyosarcoma.  Finding a "norm" for your type of cancer may not exist as well as mine however I will seek out a few people, talk to them  and see what they have done and why.

I also know my own body very well.  I know what I am capable of doing at the moment and what I can't do medically.  Until I have no choice I try not to be in a situation where I can not take care of myself.  It is a choice I have made in treatment and I realize at some point, I may have to give in on that issue. I also go by a little bit of "women's intuition".  I get feelings about things and what will work for me without any scientific basis.  Believe it or not this has worked well for me over the years.

Lastly..I then go to my sarcoma doc and surgeon.  We all talk together about treatment. I make my decision from there.  In the last 8 years I feel I have made maybe one or 2 errors in my decisions however they did not cost me time or my life so I feel I did a good job.  You all try and do the same :)...that is all you can do!

Saturday, October 3, 2009

Long Term Time...LOL

I always laugh at planning for the long term ...I bascially plan for a year in advance but no more than that.   I am not being negative.  I am just being practical and even though I really plan on being here, everything I plan always changes in a moment...literally...in a moment.  My goal for next summer is to get one of those go "anywhere" plane tickets for the United States and just go...continuously for about 6 weeks all over the States.  This excites me to no end and everything I do for the next year will focus on planning for that vacation of a lifetime. :)...So what do you want to do?

I also set family goals....When I was first diagnosed in 2001 my very first goal was to be here for my twin daughters middle school graduation.  After that it was high school graduation....being able to move them to college...now it is their 21st birthdays in 2010.  Then it will be college graduation and so forth.  I keep planning and setting goals.  It keeps me focused and moving forward.  It gives me things to look forward to when doing all these huge medical things.  I need that.

Write goals down both short term and long term..I do that even with treatments...What are you looking to accomplish with that particular goal and how do you plan to do that?  I lay down every night and dream about flying all over the place...it helps me get through my crazy days.

Now my time is up for typing....time to accomplish my next task...

Enjoy!

How Do You Spend Your Time?

How we spend our time is so very important.  If we all sat down and figured out how much time we wasted when we felt fabulous..time with people we really did not care to be with...time on tasks that seemed so important...worrying about stuff that now is so insignificant!  And all things we should have done however did not, for whatever reason :).

So today is a new day....and you are OK...here is my take on Time...first short term time..
I was never much of a day to day planner..I did not write things down..I remembered most everything I needed to do on a daily basis. Now..I am huge into planning every moment because my time is always interupted by stuff..I am also multi tasking many issues as I do most everything for myself.   I now carry a pad and paper in my purse where ever I go,  as I am thinking of what I need to accomplish...I write it down.  It makes my life much easier and I usually accomplish most of that list.  Do your paperwork daily..if you cannot do it,  find someone to help you.  Create a filing system that works for you so anyone can get to it if needed.

How about the people in your life?  Learning how to talk to people when you are going through a serious illness is an art.  I learned this along the way.  I am still practicing :).  I have learned to be very picky regarding who I spend my precious "free" time with...or even my work time.  What do you want to do with the rest of your life..no matter the time left and who do you want to spend it with?

I have found being very direct and honest in a nice way works wonders.  This also applies when you need help.  Many people want to see me for coffee or lunch..I do not have time to sit in coffee shops or restaurants.  Sometimes even a visit seems like a waste...I will say in response.."I feel great right now and I would love to see you ...(providing you want to see that person at all) maybe you could give me a hand with this ...or keep me company while I do that."  I love company when doing errands and I appreciate the help..and it gives me a chance to visit as well.  My friends enjoy helping.  People love to help if you ask...many of us feel that friends should be offering.  I have found that they do not offer because they do not know how ..it's not that they do not want to...so I ask. And it works for me. Try asking people to do exact tasks  ...more often than not...they will help.

If you do not have people to ask for help I recommend the Cancer Support Centers in your area like the Wellness Community.  Contact your temple or church and find out if there is anything available for you there.

Many of us including myself have experienced friends disappearing upon diagnosis of cancer. Also people saying stupid things to you all the time about how to heal yourself and be a better person.  I take peoples' hands, look them straight in the face and say,"I can assure you over these 8 years there is not ANYTHING I have not done to heal myself.  I thank you for your suggestion."  Develop a thick skin and realize that those folks leaving you were never your friends and new wonderful people will still enter your life.

I had one dear friend that needed company for chemo trips.  She posted her schedule on the internet and people signed up to go with her. She did that for doctor's appointments as well.  She asked for what she needed and her real friends followed through. A real friend may be someone you met once..but has the skills to help you..angels come from many places.  I have had acquaintances jump in and do incredible things for me...but you have to ask.

So in the short term...plan..value your time...and spend time with those that really have a positive effect on your life.

Friday, October 2, 2009

Remembering Vs. Dwelling

This entry is dedicated to my dear friend Tessa who likes these words.  I may have touched on this in an earlier post however I wanted to get a little more detailed about it.  Dwelling is a negatvie emotion.  To think about what you are missing all the time will surely destroy you.  No matter your circumstances you have to find something you are happy about everyday.  And trust me my ideas about happiness have changed.  I am happy when a  skilled person sticks me with a needle and I do not feel a thing.  I am thrilled to have an abundance of energy to do the things I need to do for the day.  I am most happy when I am just hugging my daughters. I am over joyed to be able to work and  to walk on the same beach for the last 30 years.  I love great food as I remember when eating was quite difficult.  I feel great exercising as I remember when my leg nerve had some damage from surgery and I could barely stand up for a few days after surgery.  I can not be outside enough as I remember the hosptial room with no windows to open and no fresh air.

I am not dwelling.  I am remembering and it makes me happy to see where I am now.  It is important to remember the wonderful things about yourself and your life.  Use these memories to help move you forward.
Do not cry too much over what you have lost.  If you are alive and able you have much work to do :)  You still never know what is around the corner.  It is really not over...until it really is.

Flexibility in Surviving and Treatment

Everyday is a new day here in cancerland.  You plan and God laughs?!  You have to think on your feet and always figure out a second plan.  My clinical trial did not work out.  There was an error on the contract so they postponed the trial.  This was disappointing to say the least.  I am trying to avoid a big surgery right now.  I have one small tumor sitting by my kidney.  I have already had two huge surgeries this year in March and July.  I am a little tired :).  About 15 tumors were removed from all over my pelvic area.  I am not in the mood to not eat for 3 weeks..have multiple IV's, have another new scar, be in pain, have a few enemas and possibly have a kidney removed :).  ARGH!!!

The new plan to to injest a drug called temador.  It is in pill form...the pill form of doxil, a systemic chemo.  I will take this for 28 days and see how things go.  If it works...I can postpone surgery.  If it does not work ..off to surgery I go (hi ho hi ho).  After surgery a trial may be available.  And so it goes.

With rare cancers or even common cancers sometimes there are NO difinitve answers.  You study the science and sometimes go with your gut level instincts.  So flexibility is very important to keep moving forward.  You must keep moving forward until you can not anymore.

Sometimes we are lucky and there is a general protocal...maybe surgery is always the best option if you can get clear wide margins (ask how big the margins should be).  Is adjuvent chemo called for ?  What do the studies say?  What kind of person are you?  I have mostly done very well recovering from surgeries and not very well in chemo.  How does YOUR body react to the treatment you are receiving?  Your body IS different from everyone else's.  Maybe I will always have to endure a surgery to stay here.  I will do the best that I can and so should you.

Always ask your doctor, "If this does not work, what is plan B and C?  If I were your family member is this what you would advise?"  Always try and anticipate the next step.  This is not being negative ...this being prepared for everything so you can take care of yourself.

Thursday, October 1, 2009

General Survivorship

You have a serious illness.  How do you get through your day?  I say the word "your" because everyone's day in cancer is different. In between a good cry, screaming, and being petrified there is surviving.  There are different levels of surviving...maybe you are still in the hospital..or maybe you are now home recovering. Maybe cancer has long slipped away and you are now putting the pieces of your life back together.  Maybe you are the"chronic" cancer person..having cancer for many years and still here to talk about it..:).

For now I will talk about the person having cancer for an extended period of time.  Very important to have all your ducks in a row...Is your Will and/or living trust done...as well as your advanced medical directive?  Are you single and living with cancer?  Do you have a medical buddy? This is someone you trust to come to your aid in a medical emergency or even in the event of your death?  If something happens to you who grabs your paperwork and takes care of relatives?....children..sick parents?  Are your financial documents in order? Are all your beneficiaries written correctly on your insurance? Do you know what to do if you children are under 18 and you are a single parent?  Do you need funeral arrangements?  Funerals are cheaper to arrange when you are alive ...:) and hopefully you won't need them anytime soon however having everything prepared does give you and everyone around you peace of mind when times are at their worst.

More on survivorship...next time..

Monday, September 28, 2009

Internet/Survivorship/Acor

Sorry for all the type o's :)  ..the patient has no patience!  Lets' talk about on line support.  I joined Acor in Dec of 2001.  I first joined for medical information about leiomyosarcoma.  I had to find someone else who had this crazy disease.  I wanted to know one person like myself.  I wanted to compare notes, make sure I was doing the right treatment....and of course comiserate!  I am so not a loner!!!  :)

I had no idea what would happen when I joined this group.  yes...I know dozens of people personally that have passed away over all these years, however I have been so blessed with their friendship, and support medically and emotionally.  I ended up meeting people from all over the world.  Some of them stayed at my home. They have helped me more than I have ever helped them. And there are all the folks that have been and are caretakers and unfortunately the newly diagnosed  ...that I try to help when I can.  They continue to help me as well as I am still not the most scientific person and I pay attention to those that are. I do not have as much time as I used to so I blog....it is better than paying a therapist :). 

The internet is an invaluable tool to assist you in recovery.  Whether you decide to read and be silent or participate in discussion.   It is so intersting how you can comminucate with people for years on such a personal level and never meet them in person!  I hope to someday.  God Bless this list ..and all those on it past and present!

General survivorship next.

Survivorship

How do you really survive cancer?  I do not mean living or dying ...just living..whether you are here 2, 10, or 20 years. How do you find support that is appropriate for you?  Everyone does cancer differently. Some people will make a career out of it and others just want to recover and never think about it again.  Some people have that luxury and others do not :).  I do not.  So I am forced to have cancer as a part of my life forever.  I must learn how to cope with it on my terms.  How do I do that? 

Lately it has been a bit difficult as I am finishing 2 years straight of illness.  I have never had that in all of these 8 years.  I have usually had a break..my longest break being 4 years.  As you all know this has caused me to have financial issues as well.  I think a lot about the house I once owned and remind myself everyday that I am still the person that lived in that house.  Living ...and continuing..

When I was first diagnosed in September of 2001 like everyone...I was in shock...me...miss health nut..muscles...gym almost everyday..no drinking..no drugs..more energy than that stupid bunny banging the drum.  I knew early on I needed help to understand what was going on.  I found my way to my first support group.  I sat for well over a year with about 8 women going through all kinds of cancer (mostly breast...more on that later) ..we talked about everything..living..dying..kids...surgeries..drugs..dating..men..we cried and laughed until we dropped!  My first group taught me how to live with cancer.  The second group I attended taught me more.

I was clean from Sept of 2001 until Sept of 2003...I had 2 years of no evidence of disease.  I then decided I needed to join a met group...short for metastisize...those of us who have had on going disease that is moving to different locations in our bodies and the threat becomes even more real. :(.    This group had  about 10 original members.  I am the only person still alive from this group.  I went to everyone's funeral ..one by one...These fabulous women taught me how to fight and how to live.  They fought disease until they could no longer move.  They tried everything...traveled to different countries..tried everything conventional and unconventional.  But through all of this they lived everyday with gusto and dignity.  I miss them.  I saw most of them a few days before they died.  One dear friend in particular apoligized for leaving me...can you imagine?

And they lived large...One gal founded the support center I went to called We Spark.  Two others were nurses and worked as long as they could.  Another gal was in the entertainment business however became our resident scientist about cancer....and the list of accomplishment goes on.  I watched live as they were dying...living came first.

I stayed clean of disease for 4 1/2  years after this..however I continued to attend group for about 2 years until it no longer existed...I enjoyed these women for who they were and it was not about cancer.  It was about support.  It was for myself as well.  I chose not be alone in this fight and I was not...even those times when I felt that way...

I have a rare cancer.  It is difficult to meet other folks with my kind of cancer and I wanted to...so I searched the internet for info and people.  Even in 2001 ...the internet was great :).  I came accross the Acor On Line Cancer Support Network.  They have a support group on line for almost every type of cancer.  I signed on in December of 2001. I am still writing there 8 years later among many other folks there as long as I have been there and longer.  This group requires a separate for next time. It's too fabulous a group to mention in a couple of sentances.

This part of survivorship is about finding group support.  It may or may not be for you.  It was for me.  Next post is about internet support.  The post after that is more about general support.  Stay tuned :).

Thursday, September 24, 2009

Friends

This is a quick one today as I am working...Can you believe my dear friend and I will be doing a clinical trial together?  This is what long term cancer does....makes strange bedfellows...crazy!!!!!   I just hope we both get the drug as placebos stink!!!!!  If this does not work we will both be in surgery for different areas of our bodies.  And of course we must live long lives...

I must say this ...Suzanne Somers is an idiot...to say that Patrick Swayze died because he fought cancer with chemo instead of herbal medicine...if that were the case no one would die from this disease...right?  Shame on you Ms. Somers.  I have tried everything..conventional medicine and other approaches....shame on you.  I get angry when people say and do stuff like that.  When you have had cancer once and never again...who really knows why?  Just thank heaven...once is enough!!! Ms Somers...how much money have you made from everything you sell :)?

Bye for now.

Wednesday, September 23, 2009

You the Researcher/your own best Advocate

Last entry we touched upon the doctor patient relationship.  I would like to be the "Joan Rivers" of the blogging world in the area of patient advocacy..."Can we really talk?"

Times have changed.  We are living longer.  We will have more surgeries....more drugs..more procedures ..more tests...more everything to have us live longer ( I hope:))..but maybe not better.  So what is your responsibility in all of this?  It is a lot.

The times of listening to your medical professional and doing whatever they say is over.  It is over.  You may end up doing exactly what they told you to do,  but you must also do your own research and be at peace with your decision.  If you can not research your illness, find someone that can help you.

Find other people who are going through or have gone through, what you are going through now.  Talk to them about how they coped and what they did.  Look on the internet for information. . maybe find a support group at your cancer center or a cancer support center like "The Wellness Community" or "Gilda's Club".
Find out what your options are and weigh them carefully.  With cancer sometimes there are no absolute options!...Just choices.....chemo or surgery?   Clinical trial or standard chemo?  Jump off a cliff?  Or laugh until the cancer melts away? :)

No regrets.  Once you make a decision on some sort of treatment...no regrets.  Sometimes there is no right answer and you are doing the best you can....do not go thinking about regrets in treatment...we do enough of that once we get diagnosed and we are thinking  about what we might have missed in our lives :).

My doctors, nurses, etc....we are partners in my treatment and well being and when I need to, I speak up!  More on speaking up in the next entry.

Doctor/Patient Relationships

Hi Everyone,

I have been reading a lot about this recently on the Acor on line support network...go into leiomyosarcoma..I will talk in depth about this amazing place at a later date..or google it yourself now and check this sight out.   I have been writing there for 8 years and I would have been at a loss had I never found this sight.

Although I have not agreed with my doctors all the time...I just adore them.  I know that is not always the case.  I have known everyone at the Cedar Sinai Cancer Center for over 8 years now.  Many of the same nurses are still there as well, the office staff, dieticians,radiology ...etc..It's damn near crazy...like walking into a hotel where you have stayed for years and know everyone...not just know everyone but really know them..info about their families and lives on a personal level.  They know my daughters since middle school and now they are in college!!! 

It is not what I had planned and maybe not what you had planned. When I was first diagnosed with cancer I used to pre plan every appointment.  I had my yellow pad and wrote down everything I wanted to say.  Everything!  Not just the medical questions but everything having to do with my well being and care.  If you can not do this ask someone to help you.  I brought these questions and my concerns to my doctor appointments and went through these lists with my doctor and nurse.  I wrote many of those answers down knowing I would not remember.  So pre plan and write everything down if you can.  This will help a lot.  If your doctor does not want to help you in this way and has no patience...find a new doctor.  Your doctors willingness to deal with you on your level shows respect and caring to you...the patient.  This is a relationship you will have for maybe years.  You need to be at peace with it.  You do not need a hug from a doctor...just respect and knowing that they are doing their best for you. 

Next blog is about you ...the researcher of yor medical issues

Sunday, September 20, 2009

It's Pouring

  Hi Everyone,

My MRI results were not so good.   I have a new tumor about an inch sitting in between my gall bladder and my kidney.  If we surgically remove it, my kidney might have to go with it...hmmm...I do believe in miracles however for the first time I am thinking this cancer may someday actually kill me...I am on the chopping block a bit too much lately.  I adore my doctors and they felt awful about speaking with me on Friday.

With that being said, I am not ready to go anywhere yet and if I need to give up the kidney..well that is OK with me.  I am a bit shell shocked at the moment ...I need  time to absorb everything and emotionally digest what lies ahead.  And then I try not think about it too much because then I would just go crazy.  So it becomes this delicate balance of thinking about things enough to get what needs to be done...and not thinking about things so much that all you want to do is lay down and cry. 

I used to think that surgery was not such a big deal.  Now I believe otherwise after 5 abdominal surgeries and a host of other smaller surgeries.  My body is not as resiliant (spell that right?) as it once was and I just can not imagine how I am going to wake up from this next adventure in wonderland.....

I also hate telling people that I love that I have cancer to this degree.  There are many things I hate about this.  The biggest thing is hurting my daughters.  They are petrified they are loosing me and rightly so as this is the third year in a row I am doing this.  They are the reason I fight so hard to stay here. 

I hate cancer as now instead of having the next 3 months to myself and just being me, I must share this time with this monster that is very slowly eating me alive.  I have to find a way to stop it before it stops me.

Wednesday, September 16, 2009

Who am I?

How do you define yourself and keep some sense of self worth through a crisis?  Who are you and who am I?  I am sharing an apartment right now with a friend.  My entire life ...years of memories are all packed up in boxes in storage.  I have no routine.  All my habits are broken.  I do not even have a car all of the time and I live in Los Angeles (the driving capital of the nation).  I spend a good part of the day navigating how I get from place to place. I am 52 years old.  Tomorrow my MRI will tell me how the rest of my year will go. The scary part is that due to our health care system, I am not alone.  It still gives me no comfort knowing that.

     I do not really cry anymore as I am too busy planning how to get out of all of this. And the funny part is if I stay sick, I may never get out of it.  It is always having huge medical bills, not being able to work enough and never having a place of my own again....or eventually dying way too young.  I am hoping to get out of all of this. :)  I always hope and try to plan.

   So who are you when all your habits are broken.  Who are you when you do not look the same, or feel the same?  How do you get organized yet again?  Can you finish what you start?  I know there is chemo brain...I have it without a doubt.  I am forgetful of names and words even though I am smarter than before. I am also quieter than before and much more observant to my advantage. 

  Adjust your frame of reference.  Adjust how you think everyday.  Pick new goals that are actually achievable.  Maybe you are not as independent as you once were, but you do not have to be dependent.  Asking for help from others is OK.  People love to help if you let them. I have always been so independent. I love doing everything for myself and by myself.  I was always the one helping others. It chipped away at my pride eveytime I asked someone to drive me somewhere, to store what possessions I had left in their garage, to ask for money when I was always the one loaning it!!! ...To not be able to pay for a place to live on my own.  Things like this can take away all the wonderful things you think about yourself.  This becomes exagerated by the fact that maybe you have no hair anymore...or you can not pick anything up...you cannot drive...being alone is scary because you are full of pics and ports and doing chemo.  Maybe you are single and have not too much help. ( a whole other story)

   You will not ever be the person you were yesterday.  Maybe someone can help you figure out what you can do.  Get help with your paperwork.  Get help with phone calls.   These people may not be your friends.  They may be what I call "angels"...people that just help you that may come from places you least expect it.
Cancer support centers, advocates, etc.  Develop a split personality.   Experience your emotions and then get yourself moving to do what you need to do.  Make a schedule and stick to it.

You have to just like youself....no matter what you look like and feel like.  If you can still move and talk...then you must.  Concentrate on you.  Get the negative people out of your life and if you can not then ignore them as best you can.  Often you will comfort people about yourself.  They will cry to you.  They know not what to do.  Your best friends might leave you.  New friends will walk in when you most need them.

I started a new job in the middle of cancer.  I met a great guy.  My kids graduated high school and went off to college.  Life will go on and so does yours if you are not dead...able to talk, and able to move....do not give in to illness.

I have no idea what I feel like saying tomorrow...(chemo brain)..LOL



 

Monday, September 14, 2009

The Calm Before the Storm?

Hi Everyone,

I have been having a fabulous time with my daughter and not had time to type.  Thursday I have an MRI to see what is new...or hopefully nothing new.  For the next couple of days I will choose to live in denial that I even ever had cancer as I wait to see if these last few weeks were a gift from God or part of another long  stretch of of time when I get to actually plan for the future (at least few months).  Many cancer survivors will call this the time of "scanxiety". 

Things happen in a moment..one minute you are living the life..and the next second you are looking at your insides on a computer monitor and there "it" is.  The "blob"...having the potential to eat you alive. :)  :(  I have reached a point in time of my treatment where surgery is not an option for awhile..I have had too many of them.  My only option right now is chemo...if something is there.

I want you to know how much I love being alive. I will not write much today as today is a day I do not feel like thinking about the future or cancer.  I am going to wotk and have some more fun with one of my daughters.

Tomorrows topic is about acceptance and pride in all your accomplishments ..as you deal with more and more medical issues and disabilities.

My Best,
Amy

Tuesday, September 8, 2009

The Business of being Sick/ Money and Change

Hi All,

Everytime I have a major surgery, it costs me about $15,000 out of pocket...or more.  I have had CT scans (chest, abdomin, pelvic) every three months or 6 months since 2001. I am sure I could light up a building at this point with all the radiation I have absorbed!  Insurance only covers half the cost. That is $650 per scan..if it is an MRI that is over a thousand dollars every 3 months.  Every three months is the standard of care for this type of cancer, which insurance does not really want to acknowledge.  These scans have saved my life numerous times and cost me a fortune!  I have been on Cobra since March of 2009 because of not being able to work and earn enough income to keep my medical benefits.  The cost of my insurance has doubled from $400 per month to $800 per month.  Thank God I am able to work now so hopefully I can earn back my original insurance on the first of of the year.  Or else I would have no insurance when the 18 months of cobra ran out....I would have no insurance!!!!  If I become ill again and can not work..I will eventually have no insurance!!!

I am on social security disability right now..however I am working hard to loose it.  You can only earn a certain amount (about $11,000) of outside money or else you loose your disability.  I would like to loose it.  The problem is ...is that if you are on disability for 2 years you then qualify for medicare....so I will loose the disability...but if I do not earn enough money to get my medical benefits back...I could loose my medical insurance and my disability at the same time...and not have the benefit of medicare.  Now if I am healthy it is no issue.  I will eventually get back to normal...but if I get sick yet again....it becomes a vicious circle of sinking a little lower each time.

I do not today want to get into the healthcare debate.  I think private insurance companies are ripping off people left and right. They need some regulation.  I know there will come a day when small businesses will no longer be able to offer healthcare to their employees.  I do believe that healthcare is a basic right of all  Americans and no one should die or go broke because of bad healthcare and/or little or no insurance.  People should not be choosing to pay their rent or their health insurance premiums because they have been ill once or an extended period of time.

If you look at the statistics, we are living much longer and not necessarily better.  Everyone is going to get something at some point in their lives.  My children (I am 52) could possibly live until 110 years old.  How are you prepared to care for yourself in a state of disability and/or long term care?  Where will the money come from?  These issues need to be addressed by individuals, businesses, and the government.  This is NOT a party issue...This a quality of life/death issue.  Commentators crying on TV, Congress people making dramatic speeches, and crazy town hall meetings will not accomplish anything. We seem have have lost a lot of common sense over the years.  Social Security was originally designed the way it was because folks were usually dead around the age of 65.  Think about it...the goverment did not want to really pay you anything.  It was the WW11 generation that really counted on social security income upon retirement.  You should not think that way. 

More issues ike this in my next entry.

Amy

Monday, September 7, 2009

Remember Who You Really Are Everyday

Good Morning Everyone. 

We talked a little about change in the last post.  Part of accepting change when it is huge and awful is remembering who you are...not who you were.  You have a core personality that never goes away.  If you were strong...you still are.  Maybe you are about to discover what you are really made of.  Cry all you want and go a little crazy.  But everyday remember all the wonderful things about your self that are still there and dwell on them.  Do not dwell on misery.  You are still here and dwelling on misery gets you no where.

This last surgery was particulary difficult.  I had a port in the main vein of my neck to allow for 4/5 iv's at the same time.  I was in a tremendous amount of pain.  I was used to getting out of bed immediatly and walking.  I could not understand why, 6 days out of surgery I was not running a marathon.  You still are who you are.  It suddenly occured to me how wonderful I am....that with all this shit going on, I am still wondering why I am not strong as an ox and eating full meals, 6 days after major abdominal surgery.  Knowing I had that thought in my head made me feel so much better.  As long as I  can keep thinking and still move about I am going to get somewhere.

Accepting change is also huge physically because your body may never work again like it used to.  When I discovered my first tumor in 2001 I was going to the gym four days a week and was the"healthiest" I had ever been in my life.  I was just 44 years young.  My daughters were 11 years old.  Recovering from one surgery I had lost the capacity to move my right leg.  It came back after a few weeks.  After another surgery I went quickly into chemo and saw my hair disappear into a styrofoam cup, watched my feet swell like a cartoon character, and my belly button squirt blood into the air. yes...this is YOUR body doing this...the human body is an amazing instrument....but sometimes it just will not work the way you would like it to.  When you can not get out of the chair.  When walking or talking just seems like too much ..when you look in the mirror and just wonder who the hell you are looking at because it just can not be you!!!!!  Accepting change here is huge.  When all you want to do is stick your head in the sand and not see people...then is the time to venture out! 

Sunday, September 6, 2009

Change and Time

Change is always with us. It's incredible, joyous, over the top, horrible and horrendous.  Have you ever been in a  moment or an extended time in your life when you know every moment was just the best ever and those moments when you just want to die.  Our capacity to deal with the horrible moments are all about dealing with change and knowing that the moment or time will pass..if you can live through it ..and if we do not, then I hope we get to go to that higher place.

So let's talk about accepting change.  There was the time I was lying in recovery and the epidural in my spine was not working properly and I was in so much physical pain...I just wanted to die right there...I kept trying to talk to the recovery nurse to say "help me"..my mind was doing it but my mouth would not (I have such a big mouth and for once it would not work!)  I decided to think about dancing on the beach in Hawaii and the fact that this moment will pass. Eventually the nurse saw my eyes open and asked how I was.  Instead of saying I am in pain and help me...I said, "Please just shoot me now!" I said it a bit stronger than that, but I will not write those words here.   I had known her from a previous surgery and she laughed.  I did not think it was so funny. Knowing that the time would pass and I would feel better, was the only way I could get through that time.

That was a physical occurance.  What about all things intellectual and emotional.  I cried for weeks on and off when I was selling my house.  I would stand in my backyard with coffee in hand every morning and take pictures not with a camera...but just my brain...to make sure I would remember certain things..certain smells.  I had so much to say good bye to ..that I was not prepared for and do cancer at the same time.  Every picture, dish, and piece of junk from my garage, was a reminder of what cancer was doing to me over particularly the last couple of years.  It was a reminder of what I was loosing.....a part of me..part of my identity....parts of my body...part of my heart.

I had garage sales and sold everything that was worth anything.  I sold my weddings rings..mine, my Mom's, my grandparents, my great grandparents...They were not worth much in money however their value in my head was immense.  Furniture, etc...all gone.

Throughout this entire 3 month process, the only thing that kept my sanity was that I knew things would change and time would pass.  That one day I would be in the next place that I would fall in love with. . That  I have many more fabulous people to meet and I am so not done living quite yet.  I did not care about the things...just what they symbolized.

That was December of 2008.  I had just recovered from an entire year of sarcoma....chemo..surgery..etc.  I had no idea at the time that 2009 would be the same or worse..chemo, 2 more abdominal surgeries, and radiation to boot.  More about change next time.

Thanks,
Amy

Introduction

Hi Everyone,

Welcome.  I hope you learn a lot from my blog.  I am writing this as part of my legacy...whether I live 20, 10, or 2 years :).  I am writing this because I want to talk about what it is really like to go through a huge illness long term...whether it be cancer, or any other disease that chips away at your life. I am a survivor of a very rare cancer called leiomyosarcoma.  I have had 6 major abdominal surgeries since 2001, 4 chemo therapies, pelvic radiation, and a collasped lung.  I have had 2 chest ports, one of which I will have forever, 2 stomach ports for intraperitoneal chemo, and a pic in my arm. I think I have had over 20 tumors removed during this time period from all over my digestive system and female parts.  I have also had several minor surgeries.
My body naked looks like one giant happy face because of scarring....but I am happy I still have it :).

During this 8 year period both my parents passed away. My ex husband passed away in the middle of the night of a heart attack when our daughters were just shy of their 17th birthdays. Even our dog died.  I sold my house ...not lost it...sold it...but still lost everything due to not the best medical insurance, and not being able to work for a couple of years.

I do not want you to feel sorry for me.  I am writing this to show people how to get through it all and keep your head on straight..even when you would like to chop it off!  This is differnt than having cancer once and never seeing it again.  How I wish I was one of those people.  I cringe when I hear people tell me that having cancer was the best thing that ever happened to them.  I want to slug them although I know they are entitled to their opinions.  I was a good person before cancer...I smelled the roses anyway!  I have not had some mind blowing experience that totally changed who I am!!!!  I was this way to begin with.  I would have rather have not been cut up like a pizza pie.  I would have liked to have continued my career. I would still like to be living in my house that I so loved.  I think cancer sucks...all the way around. I am not happy I ever had cancer..not even the first time. 

With all that being said.  I am a patient advocate for others going through this.  I help facilitate a sarcoma group at the Sarcoma Center in Los Angeles where I go for my care.  I spoke at Cancer Survivor's Day in 2005.  I have partcicpated in support groups and held my friends' hands as they passed away.  I have some friends that have had over 50 tumors removed from their bodies and they are still here to talk about it....there is more to this than attending a yoga class, or banging a conga drum...or doing acupuncture...there is so much more...I have done all of that too.  If one more person tells me what to eat..drink...or what book to read on how to heal myself through meditation or otherwise...I will also slug them...there is not anything I have not done during this 8 year period..but thankfully..I have not gone crazy! :)  Not yet anyway.

So please read 4 or 5 entries and please tell me what you think!
Thanks,
Amy