Saturday, December 31, 2011

Rubber Bands

Here I am.  I am here and I survived another crazy surgery!!  I am not only here...I am eating, driving, working...I know this is a wonderful thing.  I am also so tired ...I am a bundle of conflicting emotions....I am like a ball of a million rubber bands each being a different emotion...pulling and snapping at any given moment......but I am here and having fun as well....enjoying the wonder of it all.


And I am wondering what this year will bring....a break from medical stuff I hope.  Wishing you all out there a healthy 2012. 

Thursday, December 22, 2011

And Then the Sun Comes Out

This post is to remind all of you that the time does pass and things will get better.  I will be taking the rest of the year off...to have fun!  I am now eating although not as much as I would like. And I will be getting myself organized for the coming year.  My headaches have gone away and now I am just dealing with a huge dose of impatience...how fast can this body heal? Not fast enough. :)  I have lots of stories to tell ...just cannot sit long enough to type them.  I am so done with sitting for the time being.

Happy, Healthy New Year to everyone.  See you in 2012....and 13....14...:)

Friday, December 16, 2011

I Don't Want To Do This Anymore

I just finished my 11th abdominal surgery and I have this feeling I will never be digestively well again.  It's just a feeling.  The surgery was successful.  My surgeon got all of the cancer that they could see.  I also had a lot of scar tissue removed.  However ...my body..is tired and telling me never to do this again. 

I still can't really eat and I have lots of digestive pain....and I am so skinny.  I have so many parts missing now that it must be very empty with too much space to move around.  On surgery day the epidural was not placed properly and I had the worst headaches of my life...I wanted for days for someone to drop by and just shoot me.

After the headaches got better I was still throwing up my attempts at eating....I wanted to go home so badly.  In long term disease all of the surgeries and chemos add up ....and the years go by and you are just not as resiliant as you once were.

So I have to pray that this cancer does not grow back for awhile...my surgery days are over for quite sometime...if not forever.  I have fought this cancer very well these over 10 years...I hope my miracle of survival did not happen already.  I am ready for some fun....and food!  FOOD!

Back Once Again

My body has gotten old.  This was a difficult...however successful surgery.  I wanted to say thank you to the clinical partner that walked me to the patio so that I could feel the sun and breathe in the fresh air.  And to the medical person who has the song "Staying Alive" by the BeeGees on their cell phone that I heard everyday..you made me laugh.

I will type more in depth in a couple of days...I came home yesterday...I am not sure what I am feeling ...I just can't wait until my body can handle a cup of COFFEE!

Lots of love and holiday wishes :)

Saturday, December 3, 2011

Dear Friends and Signature

I know I promised a blog on health insurance...it will be my first one upon my return..I am having a time issue...not enough.  I go to the hospital on Monday morning and I have so much to do!  I wish all of you a happy and healthy holiday season.  I am hoping to be back here around the 20th of December.

I am a bit pertrified...sometimes ignorance is bliss :).  I know too much. 

Prayers for everyone over this holiday season..health and peace. 

Amy Regenstreif

Retroperitoneal Leiomyosarcoma  2001 2011

11th surgery Sept 6th...I am not proud of it...just had no choice if I wanted to stay here...:) I hope this is it for awhile cause I do not want to do this anymore....anymore at all.

Friday, December 2, 2011

Moments When Your Life Just Stops

Don't you get a little bit angry that your life just stops?  And then it starts...and then it stops.  I think that is one of the most annoying things for me.  After multiple surgeries, chemos, etc the last 10 years..my life just keeps starting and stopping.  It causes a lot of hardship not only emotionally ...but financially as well.

It's two steps forward...one step back..and on and on.  I need that extra step forward so when I go back it is not too crazy.  Maybe I will get it this time.  I am going to think so.

As surgery approaches there are times that I feel almost frozen in place.  I long for the passage of time ...lots of time and yet the minutes now seem so precious. 

Tomorrow is a day of fun...movies ...eating...walking...I will get the most of my day forward before I go back for a little while.  Then I am going forward big time :). 

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!

Monday, October 31, 2011

On Hold

I am sitting on hold right now with the Franchise Tax Board.  I must say I have had very good dealings with them in general.  I know I owe taxes and they have worked very well with me.  I have no complaints with them.  Having cancer for over 5 years in a row...10 in total...is my only real complaint.

Sitting here on hold I sometimes think....am I ever really going to "catch up" with my life or am I going to have this feeling of "on hold" forever.  I work and things are great...then I don't and all hell breaks loose.  I have no issues with working either.  I just want a lot of "TIME".

Time to really get my act together...BC...like it was before cancer :).  Our medical insurance should not break us...it should not throw us against a brick wall and shatter the lives we worked so hard to build.  Cancer may kill me but it did not destroy my spirit and lessen my will to live...it made it bigger. 

Our medical insurance system...broke apart the life I once had...and continuous illness makes it very difficult to get it back...I will keep trying :).  It's time for our society to realize that basic medical care is a right.  Everyone deserves decent medical care and to not loose their life savings over illness.

I am not sure what the answer is however the one we have now is hideous.  Lets have every Congress person be on my plan and see how they feel about it....I would love to have a chat with a Congressional Commitee...wouldn't you?

Wednesday, October 19, 2011

Vacation and Work Yay!

I will not be posting for a week or so...off on vacation and a little bit of work! YAY!  Enjoy!  I know that I will :).

Sunday, October 16, 2011

How to Really Buy Life Insurance

If you have young children, if you are responsible for taking care of anyone at anytime..you may need life insurance.  Life insurance can also be a retirement planning tool...I am just doing the basics today.  Always buy from a highly financially rated company.

Term Policies....all term policies end at a specified date by the insurance company, or it looses the rate guarantee at a specified time by the insurance company.  One day you could end up uninsured to soon or having to pay a fortune to keep your policy.  If you have had medical issues since you purchased your policy, your underwriting rating may have changed for the worse, and you have aged!  Buying a new term policy may be out of your reach as well.  Check the time of your term policies and make sure you benficiary statement is written properly!

Many Life Insurance Policies have a LBR or Living Benefits Rider.  All policies need this in my opinion.  This is a free rider and allows you to access a portion of your life insurance proceeds for your care when your illness becomes terminal.  Does your policy have this feature?  Please check.

Some policies can be convertable to cash value life insurance.  You may have this feature in your policies as well.  It will allow you to structure your life insurance to have it until you actually die.  Even folks in their 80's and 90's usually need life insurance upon the passing of their spouse or significant other....any significant other...could be your love of many years...could be your kids...grandkids.....could even be a charity.  It could be used to take care of estate taxes and debt from long term care...the list is endless.  Next blog will be about cash value life insurance.

Saturday, October 15, 2011

The Edge

Sometimes you have to be forced to the edge, in order to jump.  Where are you going and what would you like to do...even while going through cancer.  Maybe you will have much more time than you think.  Maybe you will have to make some plans. :)  Go ahead and jump...who knows where you will land.

Friday, October 14, 2011

Long Term Care

The Long Term Care portion of the President's health care bill was removed today and I say thank heaven.  It was poorly designed and would have cost taxpayers and the gov't a fortune.  Actually it was horribly designed.

So this does raise the question regarding how you and your family will fund your long term care.  I have long term care insurance.  I sell long term care insurance.  I was very lucky to have been able to purchase it through my company years ago.  I am not able to have life insurance.

Long Term Care in the state of California can cost anywhere from $86,000 and up...that will double in the next ten to fifteen years.  How will you fund that even if it is just a couple of years?  What if it is ten years?

As a ten year cancer patient I urge you to investigate this product while you are young and healthy...in your late 40's is the best time...50's and 60's as well!  These plans are age and health sensitive.  The beauty of the plan is that you get to design it yourself.

My favorite company for this type of insurance is New York Life Insurance Company.  They are financially stable and have been in business for over 166 years. ...There is no health insurance that covers you for activities of daily living.  Those are eating, bathing, dressing, continence, mobility, and toileting. 

There are enough medical bills with our health insurance not covering our care.  Having no long term care planning in place could put you over the edge. 

It also gives the ill person dignity and choice.  It is embarrasing to have your spouse change your diaper...maybe your spouse can not even lift you..maybe emotionally they just can't do it.  With LTC Insurance you have choice and freedom in your care and you can stay at home.  If you are healthy...investigate this type of insurance today...it may help save your financial life. I personally know from where I speak.

Friday, October 7, 2011

Your Medical Insurance

Our medical insurance system is in shambles however there are a few things that you need to know now..reminders.

1.  Have you reached your deductible for the year yet?  Remember that your deductible starts new every first of the year.   If you have already satisfied your deductible and need to do a few things..now might be the time to get these things done.  You may be able to get certain doctor visits for no charge as opposed to doing them in January.  Call your insurance company first and discuss this or call your doctor's office and ask their insurance person to check this as well.

2.  When you first applied for your insurance, how was your underwriting?  If enough time has passed, and you are better you can ask for an underwriting review and perhaps get a less expensive policy payment.

3.  Make sure everyone takes your insurance!  Do not assume that everyone does...the hospital...the doctor...pathology, radiolology...everyone!  Do not be surprised by a huge bill just because you did not check.

More tomorrow...

Thursday, October 6, 2011

Apple Man

I was supposed to talk about healthcare however I, like many people are saddened by the death of Steve Jobs.  Of course I did not know him personally, but he died struggling with cancer for 8 years.  I know cancer.   Cancer does not care who you are or how much money you have.  If cancer wants you ...it will find you.

To all those folks who consistantly tell people.... if you would have eaten this or done this you would not have this disease.....Here is a man who conquered his world...but could not escape cancer, despite the great lengths that he could afford to go.  He did nothing wrong.

A lot of this disease is a crapshoot.  You fight as hard as you can...do everything that you can...and hope for the best.  You fight as hard as you can!  If you have a chance to "you tube"  Steve's commencement at Stanford in 2005, please do.  His words are brilliant as a person that struggled with cancer who just happened to be one of the folks that re invented the wheel :) for the world.

What part of your world would you change if you could...even with cancer?....

Monday, October 3, 2011

Emotional Issues in Cancer

I used to be on an internet list ...I was there for 10 years.  I decided to leave it recently for many reasons however the biggest reason I think was the denial of some individuals that discussing emotions should not be done on this list.  After one of many posts by many people I was singled out and told that I was rude for just pointing out a few facts.  I was not rude.  You were for singling me out for no apparent reason.  Re read the posts before that.  This wonderful place for me to talk for many years became a place of great negativity. So I left....

I also realized it was time to concentrate on many thing actually going on in my life and not just in a computer.  The internet is addicting.  I have been on it way too much lately...so I will just type here.

If you are having emotional problems getting through cancer do not stand alone...get help..

1.  seek counseling,,individual or group or both
2. make sure that you have a solid plan with your medical professional..bring a friend with you on the appointment...bring a pad and paper.  It will clam you to have a plan for your care...not just physical..mental as well.

3 Keep doing fun things...and try to laugh a lot...do new things...live for today as best you can.  You may be here a very long time.

4.  Let your real emotions come out...and deal with them however you see fit...do not ignore them....You may be here a long time....like me...over 10 years with this crap :)

I still dance...go conga drumming...work etc..if you can ..you do that too.  Next blog is going to be about our fabulous health care system.

Sunday, September 25, 2011

Practice

I am getting asked to speak around town lately.  It is a mix of motivation and education.  The last time I spoke was in front of my peers.  They liked it so much they asked me to speak again in November.  It occurred to me that not only do I need to practice public speaking a lot more...I also need more practice not behaving like a sick person....a person with cancer.

I look normal...I walk..swim ...work...etc.  I am not in treatment or have a scheduled surgery...I am in no pain.  I have to practice being a normal person again..I have to stop thinking about cancer so much and concentrate on the present.  I have to practice being present.

People have issues with that anyway...When you live with tumors...I think it takes a little more practice. I am not being checked for another 8 weeks...around Thanksgiving...for the next 8 weeks I am not a person with cancer.  I am just me.  I will set my goals and have a great time.  I have not had a surgery since Feb 22nd...maybe I will make a year with no surgery???  Could it be???  My alter ego....the one who functions so well everyday...says..."you go girl"....."you can do this".....I am going to make that year of no medical treatment...It would be the longest time of no treatment that I will have had in 5 years...I am going to practice the no cancer thing until it is real....:)

Thursday, September 22, 2011

A Life

I have not felt like typing lately...I find my self frustrated with living and the thought of dying.  I love watching stories of overcoming adversity in case I do not get my own :).  I realize I have done that in many ways already however I fear that I might not really get there....get there....

Being able to stay healthy long enough to keep working and make some real money....being able to lay on a beach in Hawaii for a week and do nothing...and enjoy it.

The Hawaii part almost sounds unreachable...but reachable. :)  I want to scream..I want a year or two to grasp what is reachable...a little normal life...just for awhile...I am having so much fun lately.

Sunday, September 18, 2011

The Dash

I went to my friend's Mom's funeral the other day.  I never met my friend's mom however she must have been a fabulous person as family members discussed her joyous life in great detail.  One of the cousins said this and I really liked it....so I thought that I would pass it along.

Some of us someday will be buried and have a headstone at our grave.  Most of them have a birth date and a death date on them.  However there is also a dash in between those two numbers and it is way to small. 

The dash is the important part.  It is our lives.  It is everything in between that happens and it is way to small. (this is my part)

I am not going to be buried.  I am going to make my "dash" as big as possible.  I do not think it would fit on a headstone anyway.  It would be way too big :).  I do like the whole dash story though.

Monday, September 12, 2011

Your Last Lecture/Bucket List

It occurred to me that there should be no such thing as this actually....that you should be living your life as you would if it were the last months anyway.  Why wait till your days are numbered to have the best life.  We never really know when we are going.  It will be when we least expect. Go enjoy...go live...and plan no matter what is going. Whether it is short or long term planning...it is still a plan. :)

Saturday, September 10, 2011

I Wish I Were You

I have a great guy in my life for many years.  We have had our ups and downs...I just adore him.  He is little younger than me.  I was just thinking today how much I will miss growing old with him.  I am jealous and envious of the woman that he has not met yet.  I am jealous and envious of someone that I do not even know.

I am jealous that she will get to grow old with my boyfriend...that she will have many more years with him than I will.....  That she will benefit from all of the years of learning and practicing that we did to learn what it takes to make a committment and a great relationship.

On the other hand.  I would never want him to be alone for very long.  I would want him to have everything that we could not.  I would want him to continue to understand that life here is precious and to take advantage of every moment...even if it is not with me.

I wish I were you and I do not even know you :).

Monday, September 5, 2011

Schizophrenia and the Person that has Cancer

I hope I spelled that word right....the schizo one :)...and by the way..I am not a cancer patient anymore...I am a person that has cancer...you got it...I hate the word patient..as I have said previously..to be patient and living with cancer everyday..you must be nuts..never be patient...be assertive in a pleasant way...cancer can blindside you in a second...never be patient.  There needs to be a new word for somene in the hospital as well...patient..just does not cut it...I am accepting suggestions!   LOL

The schizo thing....I do not really have this by definition however there is the me that I present to the world and that fights this disease everyday and then there is the me that really deals with cancer on a daily basis...this is a positive as I feel it has helped me survive all of the happenings all of these years.  You may want to try it.

It may take some practice as I have been doing this for over 10 years...it works for me.  I also have this strange ability to forget passed medical happenings...Once it is done I try to file it as "done"...and I try not to think about it...

The only time I remember the worst "stuff" is when I know I am having another surgery...then I remember everything..and it makes me wish I could inhale a bottle of 90 proof vodka..:)

It has been difficult for me to type lately...I think that I have chemo/50's ADHD brain...who knows?? 

Thursday, August 25, 2011

No No I Won't Go

Is that your kid stomping on the ground or standing on the kitchen table??  No that's me.  Fighting, kicking, and screaming the whole way....cancer ....I hate you...and I do not know what to do to get you out of my body...I am afraid you might win the war and that is NOT ok.  Not ok.  I will win this battle ...this one...even if you win the war.



Sunday, August 21, 2011

The Trip / The Anniversary

I just got back from DRIVING with my daughter cross country to college and back.  It was a long however fun trip...I reminded myself  that every single time I wanted to complain about the heat and/or the long hours in the car that I got to do this trip...against all odds..I did the trip..2500 miles, 8 states..I am never sure if I will make the next trip to get her home in June and then back again in August of next year....I can only hope.

August 26th is my 10 year anniversary of my first abdominal surgery.  I did not even know back then that the tumor they would remove would even be cancer at all.  So here I am over 10 surgeries later...many chemos..2 chest ports, a pic line, a little pelvic radiation, two times bald, no belly button, a collasped lung, no gall bladder, no female parts, several bowel resections, a little less of a pancreas..etc..a belly button that used to squirt blood....If anyone would have told me that this would be my life I would have to say.....are you f'in crazy????

I am still here...still here ....Thanks all Gods...I am still here!!!

Wednesday, August 10, 2011

The Vision

This evening while waiting for my daughter I was reading "Success" magazine.  The article I really liked was the one written by Mr Gardner....Will Smith portrayed him in the movie "Pursuit of Happiness".  He reached rock bottom when he had to sleep with his toddler son in the bathroom of the Bart train station in San Francisco.  However...he never lost his vision,,,he was able to lift himself up in his mind and soul past his misery.

He could visualize himself in a new much better life.  I think even if you are dying...you have to do that in cancer. You can have moments and times of despair..but to really survive and live..you must pick yourself up and get on with it...whatever "it" is. 

Mr Gardner eventually became a millionaire.  You/We have cancer...maybe for a short time..maybe it will go away...maybe it will someday kill us...what is the life that you choose to live with cancer?  We can not control cancer really...but we have some control of the rest of our lives...just some ...:)  How will I/you live with the time we have left?  I must always see the vision in my life..I must look forward..like Mr. Gardner.

Sunday, August 7, 2011

In Awe of a Healthy Body

I am still in pretty good shape however when I see people doing fabulous things with their bodies...I could just stare forever.  Sometimes you just miss your body the way it was and all of things it used to do.  I love watching cetain sports now that I never did before...basketball, skiing, soccer,...I love watching dancing..all forms of dancing.  it's like staring at the moon on a summer night...it's all so beautiful.   I do not miss seeing far away places or traveling a lot...I miss my body.  It's ok that I will never get the old me back...because I can take pleasure in watching you.  I just hope I stay the way I am right now.

I could live without a leg, or an arm, or an eye...but I can't live without my pancreas or my liver...or my bowel...I guess I could live without a bladder...they could build a new one...it would be very hard...I do not want to do that.  :)

I need to keep my digestive parts exactly the way they are right now.  I can live well just like this.  Everything is relative at the time you are experiencing it.  Isn't it amazing what we can do.

Alternative Medicine/Treatment

This is a huge topic with crazy and sane people going through illness.  This is a billion dollar business. Juicing, pills, herbal remedies, travel to Mexico..lol...it goes on and on.  Does it work?  Does diet really make cancer stop growing or slow it down?

My OPINION on this subject is....do not throw out your conventional treatment ..if your doctors recommend a surgery ...do it...clear wide margins are very important in removing cancer.  It could save your life or give you significant time in NED (no evidence of disease).  Do not do herbal crap instead of this when your cancer is growing.  Get it out!

However then there are folks like me...10 major surgeries, 4 chemos, ect etc etc.  Living with existing disease that is hopefully not going to grow for awhile....what do you do??  No chemos seem to be working..surgery always works for a time.  I am in no pain..to look at me you would never know I am ill.

I have started an alkaline plant based diet...I have been doing much reading..so here goes...I am fine with under control...my body can only take so many surgeries and chemos...my digestive system is kind of a mess....I am just looking for a little control.  2 years of stability would be quite fabulous.

Other folks do other things...this is what I feel will work for me...I hope...I have been doing it for days now and do have more energy....who knows!!!  I walk a lot as well. I swim from time to time.  I meditate and bang my drum.  It all makes me feel like I am moving forward.  Keep moving forward in your own way..one step back...two steps forward.

Saturday, August 6, 2011

Depression and Cancer

I am sure I have typed about this before however I think it is worth repeating.  Depression takes many forms with cancer.  Maybe you are showing huge signs...crying all of the time, sleeping a lot...it's obvious.  In illness there is what I call subtle depression....

Symptoms of this are....

1.  You can not concentrate for long periods of time
2.  Paperwork is a huge issue
3.  Things you used to really enjoy ...you don't anymore
4.  A lack of energy..not quite lethargic
5.  A feeling of disconnect..like you are watching you life go..like another person lives with in you.  You do everything you are supposed to, but it just does not feel right.

Some suggestions for this time in your life...The Wellness Community..where they have free group and individual support for folks going through and recovering from cancer.  I have done both.

Do something new in your life.  Make your life move on...through the last 10 years of cancer, I started a new career, started conga drumming, Tai chi is great....It's very important to view your life like it will continue...for whatever amount of time.

Get evaluated for medication.  It does help some people immensely.  Do things ...even if you do not think you will enjoy...you never know until you are there.  Ignore people that say stupid things to you.  Love people that support you.  Lots of hugs and laugh...see funny movies.  Stare at the moon on a beautiful summer night.
Never give up...cancer does not win unless you give in to the madness :).

Friday, August 5, 2011

Tomorrow

Tonight I had a great night with my daughter.  We talked a lot about the future. I could stare at her forever.  I want to see her future as I look into her eyes...in case I miss it.  I can't miss it. I will not miss it.  Ten more years would be a great gift...It's not twenty..but it's ten.  :)  Ten is good...not great..but good...it's ok.

Tuesday, August 2, 2011

Stability in Disease...what it really means

I got supposedly great news the other day.  The tumors I still have in the back by my pelvis have not grown in 8 weeks.  That is a big yay..big...as with so many issues I have as  result of around 10 abdominal surgeries, 4 chemos, pelvic radiation, one pic line, 2 chest ports, and a partridge in a pear tree..big yay.

For sure this time around, I thought that I was in trouble...big trouble. After I shed a few tears and realized I get to be at peace for a little while longer the rest of the emotions began to check in.  This disease is chronic..bull____.  You can fill in the blank...there is nothing chronic about cancer because at any waking moment...it can move in and kill you..in a month...a week...a day.  Those smart little cells can change their growth pattern and move right in.  The thought of that is quite scary to say the least...when you are sitting with tumors.

I can be relieved and happy for the moment...I can shed those tears for the moment.  However the joy is temporary...the relief is not.  The other emotions are really primary..there is no joy in dealing with existing disease.  You have moments of joy with who ever..or you go where ever...however joy in your soul...I do not think so...only joy in moments. 

I am too busy getting ready for the next battle..because I know that it is coming..another crazy surgery someday..more tubes..more iv's, another epidural...more pain...more fear...how much can one little body endure.  I do not think other folks really get that.  It is very different than having cancer once.

So pardon me if I am not jumping for joy all of the time.  I feel the joy of being here in good shape ...I hope and I pray for time.  But I have work to do.  I will never be done with cancer and looks like it will never be done with me.  It will pick at my soul. 

There is no stability ...there is only prepping for the next battle.  It will come and I will be ready...I hope :)

Saturday, July 30, 2011

Lot's of Hope Always

After doing this for over 10 years...just had scans...they are stable...yay!  A little time challenged today however I wanted to write here to let you know that there is always hope!  I am on no chemo ...and my scans are stable....I am in no pain and I am living everyday...although somewhat stressed from time to time ...lol....:)...will post more later....keep going...keep fighting...you never know.

Saturday, July 16, 2011

Who is Chasing Who?

Sarcomas are relentless.  It's like a game.  I make my my life move forward and yet I look behind at every turn.  My thoughts of you never end.  I am as obsessed with you as you are with me. Only in the long run I am not sure who is going to win. I used to think I would...I am not sure anymore.

Writing is a lonely job and I am lonely in my thoughts of cancer....so I am not sure if a book is in my soul or not.  Maybe I have already written one without knowing it...in my anger and frustration over this disease.

I moved recently...I am so happy where I am.  Everything I do is new and yet I think ..why am I working so hard to build a life that I may never have?  Because I have to...because that's what keeps me fighting this crazy disease...that just maybe I will keep getting those moments. 

The medical stuff is getting harder...the surgeries are more involved.  The hospital stays longer..more tubes..more needles..less and less body parts...and yet I keep fighting. 

I still swim..walk..eat...work..and have fun...I just seem to be more and more haunted by this disease that keeps lurking behind me.  Let's hope you do not truly catch up for a long time.  I need some time to get more prepared for the next battle.  No surprises please :)

Wednesday, March 30, 2011

Cancer Needs a Vacation

I guess the title speaks for itself...Why can't I stay here longer?  Is it karma..my time...my body is a mess..my life seem like one as well ..but it's not...it's just this damn cancer that will not leave me alone.  It is relentless..picking away at my heart, my soul, and my dreams...so slowly.

I am still ok...a little too skinny for my taste..no pain...I am working and trying to have a little fun in between...but I know you are there lurking..and waiting just for the right moment...I think you need a vacation...seriously..think about it :)...I hear Hawaii is gorgeous this time of year...go and leave me alone for awhile...go now.

Tuesday, February 15, 2011

Catching Up

I am sorry to not type for so long.  I have not been in the mood for cancer.  I am heading into a big surgery on the 22nd..and I am still not in the mood :).  I still can not believe I am going...this will be my 10th surgery..in 9 years....plus all the chemos and radiation....

I have been so longing for a normal life ...I even went and had a conversation with a wonderful Rabbi...I say even because I have not had a real conversation with anyone religious in years.  I am not searching for God...I believe in God...I am searching for relief from illness...maybe there is none for me at this point.  I am not sure anymore.  I hope. I hope. And I hope some more.

I am lonely in illness even though I have many friends.  When I am about to have a surgery I feel like everything in my life just stands still.  It actually does.  Everything as you were doing it just stops.  Not in most cases...but in my case...how many tumors is this now...25???  Maybe 30? 

And there is no guarantee of time in all of this...none...so I will do like I always do...I walked 3 miles today :)
I ate a lot...trying to gain a few more pounds...and I will fight like hell for time...quality time...wonderful fabulous, healthy, time...clock ticking...hours passing, months counting, years building....TIME!