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