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..