Tuesday, January 29, 2013

Choices 4...Quality of Life and What Makes a Good Body Part?

Again ...read prior posts to really get this one. I have tiny tumors in a few places.  My body functions quite well with cancer. So when exactly do you go in there and get a tumor out....????  After long term disease.??

There are some guidelines....will removing the tumor preserve or ruin your quality of life?  And is that ok?  And sometimes the scans are not all that accurate...I have been told both ways...there is much less disease going in there than we thought...and another year there was so much more.....this is a game of chess and you are not the king or even queen...more like a pawn ...:)...trying to zigzag until a safe spot comes along for awhile :)

My right lung is still functioning well...so is my pancreas and my liver....why ruin a good thing ...yet?  Why stop a good body part from functioning so well in a slow growing cancer? Yet...I can not think of a good reason today...and hopefully not for a long, long, time....

I will preserve each and everyone of my body parts functioning normally as long as I can :)

Options Part 3..choices

If you are reading for the first time...read back a few to understand this post...they are all connected...reading a blog is not like reading a book...you have to read all the prior posts to understand the present :).

Today I had the privilege of seeing all of my doctors.  Many do not feel this I know however even when I am angry at them...the world...myself, cancer...my life...I love my doctors.  They treat me like an individual ...not a statistic.  They listen to me...I listen to them.  I hear them and they hear me.  I am a very lucky gal to have them watching out for me and making me feel so alive :)...alive being the operative word here ! :)

So I have no idea why I am also fortunate not to be a crazy person.  This will help you with your doctors as well...if you are crazy in appointments...do not go alone...get someone calm to go with you.  You need that.  I have had my moments when I have left my doc's office and come back a few days later ...having had time to recoup and think about a plan.  Always look at your case as a whole and not at that moment...this will help you discuss with your docs.  This helped me today.

My first stop was the lung man....Based on my case history...we could do a surgery on my right lung...I would loose about 10% of my right lung capacity...no big deal.  I can still walk my 2 miles...:)...This surgery can wait a bit...

So can the abdominal surgery...so long story short...I am waiting until mid March...next scans to see what happens...unless my body tells me otherwise during this time.... I can live with cancer forever,,,if it can live with me.....I always make jokes and say remember C...if I go to heaven...so do you and and don't you want to stay here a bit longer and make me crazy?  I would think so...

So during this time I am going to continue my vegan...alkaline meditative ways...work and live like I am going no where soon...and try some fun alternative stuff and pray everyday for stability.

I must add...someday I may do conventional chemo...as a last resort...not now...not for me...I am not discounting that for you...I am only sharing my case and feeling a deep knowledge that chemo at this time would be a waste for me.....I will continue to post here about all kinds of medical, healthcare, and advocate issues...stay tuned ...Thanks and Prayers for all of us..xoxo

Monday, January 28, 2013

Options 2...Long Term

If you are tuning in now ...read prior posts to really understand the next few...I am actually being organized...for a change :)...So you read about that treatment after long term disease has no real science to it...not in my case anymore..however there are choices...and how do I decide what to fight for...and keep living in my present state of semi peace, fun, and semi tranquility ????  Sense of humor is very important.  Only sporadic bouts of worry, insanity, and sadness creep in from time to time. And then I realize how much I can do ...and I throw out the fear of not being able "to do" anytime soon...and I go back to being me.

Most of choosing options in long term disease for me has been a lot of gut feelings about things.  I feel that I have only made one mistake in all of these 11 years.....

So right now my choices are a bunch of chemos....waiting awhile until next scans and doing some fun alternative stuff...or fighting for a surgery in either my abdomen or right lung.....as a start...

Are not these fabulous choices??????   Everything in there is very small at the moment.  And I am very happy to live just like this for the rest of my life.

Remember that not deciding anything at the moment is also a choice.  This is where calm rational decisions come to play....to not rush...evaluate and think...and not freak out at the thought of one cell growing....hard to do I know....I have lived with tumors before as I do now.  I feel better now than before....I am doing nothing at the moment while you all research with me.

Next post is Options 3.....I am taking you through my own process...yours may be different :).




Options in Long Term Disease 1

Remember this is written by a patient ...not a medical professional...there is a difference.  Remember that doctors look mainly at statistics in treatment...you can look at that first ...That is the starting point...then it is time to start concentrating on you and just your case.  Only you can help your doctor decide what is right for you...You must speak up..:)

So I have disease in a few places...however I am so healthy...seriously...I have always been so healthy.  I exercise everyday.  I can walk miles.  I am never out of breath.  I do get tired from time to time.  I can eat anything. My body is fit. I need to give you background in this as well to understand why I feel the way that I do.

My case has never been anywhere near a statistic.  I have had tumors twice in my armpit which my doc said in his entire career that he has only seen one other time.  Those were removed and I have seen nothing since in that area...I have also had other places where tumors were removed and they have never come back.  Remember that I am doing this 11 years. Remember that my type of cancer only occurs in one out of 2 million people.  There are no real options...just a shot ....sometimes in the dark...and then we pray...so far so good...more later...on options...this is a start.










Sunday, January 27, 2013

How To Live With Cancer...Newly Diagnosed

This post is dedicated to my dear childhood friend...whose family is my family.  This is for all newly diagnosed cancer patients as well.  My dear friend...let me first say that my favorite memory of you is this....I am eating at your house almost on a daily basis...and how overjoyed I was at doing that....for the food and fun as well...

I am always the first at the table :)...seriously...I am...and you are the last because you are always running in from hockey practice ...standing on the steps in between the kitchen and den...holding your stick...and HUNGRY!  :)....that is my most vivid memory of you....lovely days those were.

So hundreds of years have passed and now we are in our 50's...hard to believe...and even more hard to believe that we now have cancer in common...and that part sucks...really sucks....I can not use the other words here...:)...

After 11 abdominal surgeries...4 chemos...2 chest ports...2 stomach ports..a pic line...2 armpit surgeries...one collapsed lung...and a few blood transfusions..etc..I  would like to give you a little advice..because I love you and hate that this is happening to you...I will be a bit more honest than others...

1.  Cancer sucks and it is going to take you a long time to really get better....
2.  Feel free to NOT be in a good mood or be positive...just make up your mind to fight....everyday even in the worst mood...the worst pain... just imagine being here everyday...even in tears...fight...
3.  Laughing and a sense of humor is important even when you are not feeling too positive...
4.  One day at a time...feelings ...pain...illness...can change in an hour...a minute or second...it has happenend to me.
5.  Do not worry too much about those around you now...they want to help you...let them...you will feel better. Feeling guilt is a wasted emotion in illness...
6.  It is ok for your family to see you ill...they need to see your good and bad moments...tell them it is ok to cry in front of you....It will make you all feel better...do not hide the sadness and the joy...
7. Seek out therapy and/or group support...this helped me very much all of these 11 years. I went in and out as I needed it.  You may need someone to talk to about stuff other than your family.
8. Do not talk to negative people and/or people making really stupid comments...now is the time to focus on yourself and get well....
9.  Alternative stuff...I have done lots...acupuncture...tai chi....meditate...reflexology on my feet...massage...
creative visualization...hypno therapy...all of this is wonderful etc...make yourself as comfortable as possible.

I could go on forever however this is a good start...I think of you everyday...pray for you ...and know that you are a fighter ...I remember those hockey games...xoxo







Wednesday, January 23, 2013

Before Options

After 11 years of battling this disease...I have had many battles...I think now the war is on...I have thought this before and later realized that it was only one battle of many...I am little worried now...I am older...and little tired.

I have felt tired and old before.  It is not that I am done fighting...far from it...I was just so enjoying my 15 months of medical freedom...I am going to get it back...or maybe I can be stable for awhile longer?

I am tired...Maybe I have to get tired before I rally the troops and move forward. I will will have a more definite story in the next week.....

Options...more tomorrow :)

I Will Be Back :)

Sorry for not posting!!!   Need a little break to work, and plan...I will be back shortly!

An have much to say~!!! xoxox

Sunday, January 20, 2013

Options...In Treatment..How

I still need to elaborate on Balance...However now I am thinking about OPTIONS in treatment and how to pick them...

When you have cancer in very different places there is a lot of confusion that needs to be addressed.  The parts of your body...they need to be treated differently and you are trying to stay alive....some parts you can mix together and treat at the same time...some you cannot....for example...can not treat a lung and pancreas....at the same time in surgery...or a liver and a lung..I know chemo is available however I am not sure that is the path for me ...yet...

So I have reached that path in cancer where I need to mix and match...best that I can...I have to think out of the box and not like a "normal statistic" if I am going to stay here...so here I go....

I am seeing the lung doc on the 29th...That is my biggest worry at the moment....will continue this in the morning...off to work now...


Wednesday, January 16, 2013

Balance

What is balance?  Is that an organizational skill?  Is it a mental health issue?  Is is both?  It is...it certainly is...everyday...some days are better than others right? Even with healthy people....Balance is bigger when it is needed in illness....and you must accept the fact that you might not have it much of the time.

Acceptance and acknowledgement is the first step to balance....more later today...just wanted to get this up....this same post will be bigger later...


Tuesday, January 15, 2013

Balance, Options, and Denial

Three great subjects on this journey.....

Balance what?   Your work? Your Family?  Your Illness?  Your Healthcare? You...how do YOU have balance...in your life going through this?

Options for your care..too may and none guaranteed to work...all with huge physical consequences...what do you do?  How do you decide?

We now are living longer and in some cases do crazy medical things to stay alive...sometimes they are worth it to try and sometimes not....How do you choose?

Feelings concerning denial in the fight...how do these feelings come into play in fighting cancer...or any illness.

Next post...is just about Balance.

Tip #1 Doctor Talks and Emotions

Ok...it took me approximately 24 hours to get over the shock of tiny tumors growing...however still tiny...Thank God...my doctor's office told me this morning that if these tumors continue to grow at this rate forever that it would be about 20 years until I actually died.  This is good news.

With that being said cancer is a funny thing...one day your good...the next day things grow out of control and life is crazy..I have seen this in my 11 years of this disease.  You just never know...

So for the record and all of you following my journey the last 4 years here and now....I now have tiny tumors in my right lung... in my liver...free floating in my abdomen..and on my pancreas...the not good side of your pancreas...that really needs to work...I will have measurements later....

I still do everything...everything normally...I run...work...some eating issues...I am mostly muscle..I work out..I have fun...I scream..laugh...cry and enjoy...I am still very much "me".  I will not wait 3 months to be checked again...too long...

Balance...life is about balance...and options....next post is about that.....in healthcare and life...

Monday, January 14, 2013

Scan Results and Some Laughs

I did not get great news today people.  It sucks...so I chose to do the stupidest thing that I could think of.. to make me laugh ....I am watching the Bachelor....a bunch of beautiful bodies and the potential for great sex...why not watch!  LOL

I miss my healthy body....young body?...Who cares...just healthy body would be fine!

The thing is...my body still works...it all still works ....as I have said before...cancer...we can live inside me together...you are not contagious....we can be together ...you just can 't grow anymore...

Remember if I die...so do you...more details tomorrow :)...too tired to type......ready to fight. :)

Saturday, January 12, 2013

The Bucket List Idea is Ridiculous!

Whoever thought this original concept up is a genius.  They even named a movie after it.  I would propose that this bucket list thing is just a ridiculous idea however a great marketing tool!

I do not like the idea of a "bucket list" because I believe that it focuses on death and I do not like the idea of dying at such a young age...the whole idea is to do your favorite things before you die....

And a "bucket" ?  Have you ever seen a nice looking "bucket" and would you want to put everything in that one bucket?  Not me. :)

So let's look at this in a different way .....

How about a life achievement list......or the most fabulous things that I will do in the next couple of years...screw that "bucket" list...I think it cause negativity and I want to end this post on a positive note :).

Happy Weekend! I get results on Monday...I better get moving on that list! :)


Sunday, January 6, 2013

What is Happy?..to be continued

I have been thinking about this a lot today for some reason.  Are you Happy?  What is Happy?  Are you a happy person?  Does being in a certain place make you happy?  Does being with a certain person make you happy?  Does love and/or sex make you happy?  Your kids make you happy?  Are you born happy?  Can being happy be learned?  Can you feel happiness all of the time?  Is it a feeling or a concept?  Is happy the same in illness as in health? Is there really no such thing as happiness?  Is it really just a feeling of contentment and peace from within?

Is finding peace a bunch of crap along with meditating and calmness...I could go on forever with questions...is happiness just inhaling a bowl of coffee ice cream with whip cream on it?? (yes)

Is everyone's definition of happiness different?  Can you be happy and then loose it? Hmmm...

This post is not addressing mental illness...that is a different story..chemical depression and other psychiatric illnesses are not the topic of this post...the real feeling of "happy" is.  So what the heck is happy??  Is it just the opposite of sad?  I really know when I am sad however I am not sure when I am happy all of the time...








The Rules of Life...Happiness and Discontent

This weekend I spent at a great conference with very motivational people.  Everyone was selling their stuff in the end of course however it all came form the heart and they were all experts at what they do....and many of them learned their crafts the hard way.

They came from great pain and they succeeded at something totally unexpected from what they set out to accomplish in life....I like that stuff.  It shows you that you can succeed at something if you follow certain steps and believe in yourself.

In cancer this all is magnified I believe....if you never liked yourself to begin with...you like yourself in cancer even less...if you love yourself ...in cancer you love yourself even more.  Either way you must learn how to fight....With the thoughts and beliefs in wellness and joy rather than in anger and illness the fighting is much easier.....

However in life all the same rules good and bad are the same in illness as in wellness...You must learn about being happy from deep within your soul and live that way...

Tuesday, January 1, 2013

January 11th..Scans

Hello and Happy New Year!  2013 ..Wow!  I have scans January 11th and I just find myself sort of speechless until I find out what my next 3 months of living will be like.  I feel fine however with me you never know when this shitty disease will rise up and ruin my plans...of which I have many.

As well after doing this for 11 years and 2 months I am feeling speechless today...which is an odd feeling for me...being from New York and not shy...I always have something to say :).

Maybe because it was the holidays and the last couple of years I have not liked the holidays so much...I am glad to have "regular" life back in the swing of things.

I am hoping for this year to be a peaceful and fun one for all of us.  So we will talk soon...if you have a subject to discuss please mention it here and please do not post something that you are selling!

Thanks!