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..