Tuesday, November 29, 2011

Pre Op Fun :)

Tomorrow is pre op day.  First I will see my surgeon.  I love my surgeon...I would rather bump into him in a restaurant or at a party...but if anyone was moving and chopping up my insides...I am glad it is him.  About 10 years ago I had a very bad reaction to a chemo.  I was not in the best mood and decided at that very moment that I wanted my chest port removed.

My surgeon told me that he could do it for me while I was awake and promised me that I would not feel a thing....that the only thing that I would hear was the little buzz saw that he would use to cut the port out.  He said that it would be "quick".  I was young and crazy (44 yrs old) and in much better shape than I am today.

I went for it.  I took an atvian ( or two) ..went into the out patient op room and with me staring into his nurse's eyes..we did it!  Of course he made me quite numb with needles in the area. :)  This is how I met my favorite surgeon.  I have never forgotten this experience.  It helped make me what I am today...still nuts :).

After wobbling out of the room, my friend proceeded to drive me home,  and her car with us in it, broke down on the freeway....the 405 freeway in Los Angeles...the busiest most traveled freeway in the world!  We waited for a tow truck to drive me home.  It was quite a day!

A lot of people have issues with their doctors.  I have from time to time but it was never about how I have been treated as a patient.  My sarcoma doc and surgeon are the best.  I have only differed in the chemo stuff.  It has never worked for me..only these crazy surgeries.  In these last days of pre op and reality sinking in ...everytime I have a bad memory of a past surgery...I will overcome it by remembering that I got well...and maybe this time I will stay well for a long, long, time.  Thank you Doctor :).

Monday, November 28, 2011

Moments

Living for the day...the moment is very important for everyone.  If you are waiting to say something to someone....say it.  If you have been wanting to do something ...do it...and I am not talking about your bucket list.  I am talking about your words...your emotions ...to those that you love....and maybe those that you don't :). For many years I could not easily say I love you to many people.  I do not hesitate now.

Do not leave this earth with any regret or unresloved issues that you can control.  We can't control cancer much of the time...however we can control certain moments...that we never get back.

Next blog is about health insurance....back to reality :)

Multiple Personality Disorder :) & Time

Having long term disease...surgery and treatments...makes you crazy...one minute you are conquering the world and you can put up with just about anything.  The next minute you are ready to go to sleep and never wake up.

One minute you can be quite cliche and thankful for the "moment"  for "now"....and the next  "moment" you can not see past all the many tubes in your body.  You have so many mood swings that you are ..hanging from a pendulum (did I spell that right?  The thing that swings from side to side..lol)...trying to stop somewhere in the middle without chopping anyone's head off!

People will run to you to help...others will run away....You are not sure if you should tell someone how you really feel or if you should just show them your fabulous "mood" all of the time....and save all the craziness for when you are alone in your car :).  A good scream works wonders.

I understand that the worse case senario is just to difficult to face.

I understand that being a little crazy is just fine...that my moods will swing...that I can still enjoy the moment anyway and your company...That I am a strong person even if I go nuts from time to time.  That I am scared too with you and it's ok to show it.  It's normal.  I may sock you though if you tell me to be positive all of the time.  I am not depressed...I am just crazy :).  And I am not going anywhere :)

Sunday, November 27, 2011

Talking to Kids About Cancer

My daughters were 11 years old when I had cancer the first time.  They are now 22...ten surgeries ..going on eleven...chemos..etc and the death of their Father in between all of this.  I have found that age appropriate honesty works the best.  I do not try and hide anything.

I let them know that I am scared like they are...that from time to time that I am going to have a good cry.  I also let them know that I will always fight like hell to stay here....that I will have the best life no matter what....that I will still laugh..sing in the shower and my car...and that I will never leave them until I have no choice.

I will always believe that life is a gift...and there should be no fear in living the best life possible.  I plan on being here for awhile however should I not be...I did the best I could and that is what I expect from them....and that they are the best experiences that I have ever had in my life..and I am just so proud to be their Mom.  I love that word MOM...I miss my Mom right about now.

So if you are reading this blog for some type of inspiration...then just know that after over 10 years of cancer...that I still love being alive ...that my body is giving me a hard time however still basically works..:)...that I am so not done yet....I am so not done!

Saturday, November 26, 2011

When I Open My Eyes

Surgery on December 6th...11th abdominal surgery...Just some thoughts.

When I open my eyes.. and for those moments that I am trapped in my body and can't talk due to anethesia..please make sure that I have that pain button in my hand and that I can press it!  I hope the epidural is working...one time it did not and I just thought someone please shoot me.  At least you get a kid out of the pain of child birth :).

I hope when I open my eyes that the important parts of my body are still there...and that they are usable :).

I hope when I open my eyes my family and friends are smiling.  I hope when I open my eyes that I remember a good part of the day!

When I open my eyes I hope that my surgeon is happy because I have known him a long, long, time and I can tell when he is sad....and that would not be a good thing.

I am hoping for the very best.  I hope when I open my eyes that I can see a long life before me.

Wednesday, November 23, 2011

Just Annoyed With Myself

Long Term Surviviors of any illness....aren't there just moments when you just cant stand yourself???  Seriously....I am sick of giving people I love bad news.  I am sick of opening and closing my business.  I am sick of being sick!  I am fed up with more surgeries (Dec 6th).  I am not a good sick person.  I am tired of arranging care for myself and disrupting everyone's lives. 

I am sad for my children and friends. I hate seeing the fear in their eyes.  I have enough fear for all of us.  So let's buckle up people for the next ride.  I have to believe that I will be ok...that I have more years...that I will go through more shit however I have more years....years...

As I approach my 11th surgery for this disease..I pray for me and you for a Happy and Healthy 2012....that I will turn 55 in June and we will party with dancing, singing, and celebrating.  Cancer will never be a memory for me...but I will put it in it's place for a little while...maybe a very long time.

Lot's of love and family this Thanksgiving.

Saturday, November 19, 2011

No Patience No Time

As I have said before who ever invented the word for "patient"...I have no patience.  As time goes....I really have less and less patience.  The longer I live with cancer...the more that I value time.  The more that I live with cancer....the more I know how little time that I have.  I hate cancer.  I love more time.  I get my scan results on Monday.

I know that medical "time" will come again...and I am so very tired of that kind of time.  However sometimes I must do the medical time to get the the good time...but how many times?

How many times do I do the medical times to get less and less quality time?  How much time is the actual time worth?  Am I confusing you?  I get it exactly.  I am tired and not at all tired....all at the same time.

Tuesday, November 15, 2011

Cancer

I actually do not know what to call this writing today...I just believe life is going to catch up with me...cancer is going to catch up with me.  This cat and mouse game that we play...I am not not feelin to good about it this time around.

Sometimes I think that is good...so that when I talk to the doctor after scans ...getting good news would be such a wonderful shock.  I get to scream and jump for joy. I think it is worse to feel fabulous and get horrible news.  I saw the movie 50/50 the other day.  It was ok as cancer movies go...Even though I have so many scars from surgeries...I could not look at his scar..or anything having to do with needles.  Needles suck...especially when you can not find veins :).

I think what a run I have had...over 10 years with this disease...If I need another surgery ....I am just not sure what to do anymore.  I hate cancer...but I think I hate surgery and chemo more.  I can live with cancer forever....it just has to to learn to live with me..

Remember cancer...if I die anytime soon...so do you.

Saturday, November 12, 2011

201

This is my 201st  post.  That is hard to believe...I am still here and I still have anything to say...either I have had cancer too long or there is just too much to say...both I think...I was just dancing around the room to the singing of Andrea Bocelli.  I just adore him.

This is a crazy week of scans...I hate needles...I hate dye being injected though my veins every three months..and in an MRI machine like a frozen hot dog wrapped in a metal bun..for 45 minutes..breath..exhale...breath...exhale...

But if I get decent news than it was all worth it ....and then another 90 days of peace in my life...I will get to celebrate both my daughter's birthdays and enjoy the holidays...

If I can make to Feburary...that will be the first time in 4 years that I will not have had a surgery or chemo in one year...please can I make to February?  Please? 

Wednesday, November 9, 2011

Here We Go...Scan Time

On the 18th I have my scans.  I see the Doc on the 21st.  I hate this time of year.  This time of year for me is every 3 months.  Maybe it's a relief to know I already have cancer?  The question is, "What the hell is it doing right now?". 

I understand post traumatic stress.  I can not compare myself to our soldiers in battle however I have nightmares from all of the surgeries, chemos, and various medical experiences that I have had through cancer...and the thought of my vacation from cancer... might be ending shortly once again..would make  me more sad than you can imagine...and I know many of you reading this...can imagine.  This is not news to you.

I can not imagine another surgery after at least ten...I would be more worried about my digestive system disappearing..not being to eat is big thing.

I just hope if these two little tumors did grow...that they stayed in place and did not spread where they do not belong....like anywhere in the bone of my pelvis...my spine...or back...now that would petrify me.

I am not scared of being dead.  I am just really tired of medical procedures, pain, and I really like being alive. I want that chance to "catch up with myself".  Time...to work..dance..help some folks..and laugh...its the holidays :).

Sunday, November 6, 2011

Oncologists

My doctor is being honored tonight by the Sarcoma Foundation of America.  His name is Dr Charles Forscher.  I also have a fabulous surgeon...Dr Alan Silberman.  I am very lucky to have world class docs on my side.  Being an oncologist has to be a stressful job.  You know going in that a good portion of your patients are not going to make it...especially serving the needs of patients that have a very rare cancer.  You have to truly believe in serving others.  I know you have to love the science of it as well.

You get to know these people and their families in the most crazy situations.  It's not like having the flu or breaking your arm in soccer. This as you know is life and death..most of the time way too soon.  As a patient going to this event tonight I am most grateful, honored, and happy for his recognition.  I do wish that I was not a patient...I would rather be a donor of much money :).

I do look forward to the day when there would be no need for oncology as a profession.  I doubt I will see it in my lifetime.  So for now thank God I have the doctors that I have :).  There is so much work to be done!