Amy's Money Health Care Blog

Empty Chairs

2012-01-20T10:02:00.000-08:00

This blog is dedicated to my friend whose name I will not mention however you know who you are. I love you. I help to facilitate an in person support group for Sarcoma. I have actually participated in several support groups since 2001. I found them to be an enormous source of support however I know that they are not for everyone.

One of the reasons they are not for everyone is that many times people in the group actually pass away. And many times they heal ...and many times they just move away to be with family :). I thought it important to let you all know what I have learned from all of the people that I have been in these groups with. Some of them have helped to save my life...especially emotionally. I have learned to fight and accept certain things from them and much more.

I have learned that there are living angeles among us. That once inawhile you can look into someones eyes and know that you are in the presence of great strength and dignity. That no matter how long we are here on this earth...that I am a better person for having spent my precious time with you.

The moment you walked into group I could hear your soft voice...however behind it, I knew that you were going to fight. I could hear your strength....like a pleasant but powerful breeze. And I know that you will keep fighting as long as you can.

All our days will come someday. I have no idea why I am still here. I rejoice in that everyday. I am stronger because of my heroes both living and passed away that I have had the honor to meet. They have taught me how to live and how to die. I will have more heroes in my life...this I know. For each empty chair in group...another person will come fill it and I will do the best that I can to help. I love you...and you have made quite an impact on my life. God Bless you and your family!

Radio show is the first week in Feb...details to come.

Radio Show

2012-01-15T08:41:00.000-08:00

Hi Everyone,

I am beginning a radio show the first week in February on blog talk radio...details to follow...I will not be typing very much until then. I decided typing was not enough for me! :) If there is something that you want to talk about please let me know and I will try my best. I will be focusing on all things medical...dealing with long term illness...the emotional, functional, and financial aspects of dealing with this disease from my perspective ...as a cancer patient for over 10 years.

I am going to be honest and opinionated as well. It will be an hour twice a week and if you can't tune in you will be able to download and listen at your leisure. I will be having guests as well...people in all kinds of professions in the medical world starting end of Feb/beginning of March.

If you like my blog...I hope that you will listen!

Thanks So Very Much!

I Should Have Just Decked the Guy!

2012-01-11T18:00:00.000-08:00

Today I actually had a great day. I attended Entrepreneur Magazine's awards luncheon and seminars. At breakfast I happened to have sat down next to a gentleman. We started talking about life...what we do ...etc. He calls himself a "Natural Healing Coach". I thought here we go....I did not tell him yet that I am a long, long, long, time cancer survivor.

Just so you all know....I have done everything..all of the conventional and many unconventional therapies..I have seen people with a little cancer eventually pass away quickly and others with cancer everywhere live a very long time. I have come to my own conclusions that we do the best we can and I think when God really wants us....we are gone...

Cancer is not the patient's fault...obviously if you were involved with chemicals unknowingly...smoked...etc...I am speaking generally of course...it is never your fault...patient's often feel guilty about being ill...especially when it comes to family and close friends...it is not your fault..ever..

This "gentleman" I now use the term loosely..proceeds to tell me how cancer in his mind is not a disease..it is a mindset and everyone can cure themselves with the correct mindset and his help! Could you see my blood just boiling...I just stared at him for a moment...a long moment into his eyes and said," Your kidding right?"
"Are you for real?". I just got up...and went to another table. I had a great time.

I came home ....took a very long walk...and wish that I had just decked him...

Snap, Crackle, & Pop

2012-01-10T18:53:00.000-08:00

If you are in your 50's...no ...this is not a cereal commercial :)...I still love Rice Crispies. I have seen the doc..gained three lbs..most females would be freaking out over this...for me it is a miracle! I need 5 more...eating after abdominal surgery...or 11 surgeries is a chore...tasting things is fabulous...digesting food is whole other story...

Staying hydrated is a big deal as well...I know every bathroom from Orange County to the San Fernando Valley off the 405....every Starbucks at every exit..:).

I think I have experienced every emotion quickly...so that I can get back to work and be as normal as possible...no scans for 8 weeks...people are again looking at me saying..."Are you sure you just had surgery 5 weeks ago?"...trust me my insides know...and I am happy that you can't tell...I think :).

Tai Chi and Chi Gong...here I come...with 8 weeks of a normal life I need to be in motion...breathe properly and work. I am praying..praying...for many months of peace....if something pops up quickly...I am just not leaving "normal" for awhile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Rubber Bands

2011-12-31T19:46:00.000-08:00

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.

And Then the Sun Comes Out

2011-12-22T19:05:00.000-08:00

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...:)

I Don't Want To Do This Anymore

2011-12-16T18:00:00.000-08:00

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

2011-12-16T10:21:00.000-08:00

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 :)

Dear Friends and Signature

2011-12-03T19:12:00.000-08:00

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.

Moments When Your Life Just Stops

2011-12-02T20:06:00.000-08:00

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 :).

Pre Op Fun :)

2011-11-29T18:44:00.000-08:00

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 :).

Moments

2011-11-28T17:52:00.000-08:00

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

2011-11-28T17:39:00.000-08:00

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 :)

Talking to Kids About Cancer

2011-11-27T20:13:00.000-08:00

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!

When I Open My Eyes

2011-11-26T14:04:00.000-08:00

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.

Just Annoyed With Myself

2011-11-23T18:18:00.000-08:00

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.

No Patience No Time

2011-11-19T18:35:00.000-08:00

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.

Cancer

2011-11-15T19:31:00.000-08:00

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.

201

2011-11-12T19:56:00.000-08:00

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?

Here We Go...Scan Time

2011-11-09T18:06:00.000-08:00

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 :).

Oncologists

2011-11-06T14:14:00.000-08:00

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!

On Hold

2011-10-31T12:13:00.000-07:00

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?

Vacation and Work Yay!

2011-10-19T07:49:00.000-07:00

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 :).

Why did he do that?

2011-10-17T20:59:00.000-07:00

The other day a young man in his 20's jumped off the roof of my tall office building and died at about 4pm. I was sad...why did he do that? One person in the elevator stated that he was in a rush...he kept banging the elevator buttons. Maybe a few more moments would have changed his mind.

I wish he would have changed his mind.......

How to Really Buy Life Insurance

2011-10-16T10:28:00.000-07:00

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.

The Edge

2011-10-15T21:17:00.000-07:00

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.

Long Term Care

2011-10-14T20:28:00.000-07:00

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.

Your Medical Insurance

2011-10-07T20:01:00.000-07:00

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...

Apple Man

2011-10-06T08:18:00.000-07:00

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?....

Emotional Issues in Cancer

2011-10-03T07:59:00.000-07:00

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.

Practice

2011-09-25T08:25:00.000-07:00

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....:)

A Life

2011-09-22T21:16:00.000-07:00

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.

The Dash

2011-09-18T20:34:00.000-07:00

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.

Your Last Lecture/Bucket List

2011-09-12T15:01:00.000-07:00

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. :)

I Wish I Were You

2011-09-10T10:30:00.000-07:00

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 :).

Schizophrenia and the Person that has Cancer

2011-09-05T08:06:00.000-07:00

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??

No No I Won't Go

2011-08-25T21:46:00.000-07:00

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.

The Trip / The Anniversary

2011-08-21T16:23:00.000-07:00

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!!!

The Vision

2011-08-10T21:58:00.000-07:00

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.

In Awe of a Healthy Body

2011-08-07T15:11:00.000-07:00

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

2011-08-07T14:43:00.000-07:00

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.

Depression and Cancer

2011-08-06T10:38:00.000-07:00

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 :).

Tomorrow

2011-08-05T22:19:00.000-07:00

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.

Stability in Disease...what it really means

2011-08-02T18:43:00.000-07:00

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 :)

Lot's of Hope Always

2011-07-30T10:13:00.000-07:00

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.

Who is Chasing Who?

2011-07-16T20:27:00.000-07:00

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 :)

Cancer Needs a Vacation

2011-03-30T17:46:00.000-07:00

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.

Catching Up

2011-02-15T16:11:00.000-08:00

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!

Focus/More Mental Maintenance

2010-12-14T19:36:00.000-08:00

I know they have proven chemo brain and the effects of multiple doses of anethesia..:)..couple all of that with the stress of on going cancer and you get one crazy brain!!! It is not enought that we are all a little bit nuts anyway..

I am having great focusing issues this time of year because I remember so many people that I have lost in recent years. My Mom, my Dad, the Father of my children, even our dog....and the countless folks I have met while battling cancer.

Memories of wonderful times we had flood my brain and I get very sad. I long for new happier times so that when I remember times gone by, I can smile and not feel so lost in this crazy disease.

So for the rest of this year I will try and focus on what is good TODAY and hope that next year at this time that life is just a little bit easier as far as medical stuff goes...the rest I can handle :)

Be With Me

2010-12-12T16:52:00.000-08:00

Please be with me today...in the present. Let's not think about what might happen. Let's not talk too much about the past. Let's just be here today. Today even though I have cancer..I am healthy..I am still me. I am still doing everything that I normally do in a day...so please think of me in that way. To think of me as any other person right now would be a crime because we would miss the moment. Can't miss that moment. :)

Do Not Cry For Me

2010-12-12T14:46:00.000-08:00

Today I went into my favorite high end supermarket to buy a lot of really fabulous fattening food..it was that kind of a day..then I will walk it off ..LOL...

I bumped into my regular ob/gyn. Thanks to her quick action over 9 years ago I discovered my cancer very early. She is one of the people I consider instrumental in me still being here. I adore her.

I had not seen her in a couple of years. Of course she gave me the look...you know the look...the how are you really???..look. I told her that I just started a new chemo last week. I could see the sadness in her eyes.

I wanted to make her feel better...I said not to worry...I am still here 9 years later. She said it would be nice if it just went away...I agree...I so agree. Then we just caught up on other stuff.

Do not be sad for me. Do not cry for me...I do that enough on my own. What you can do for me is live...really live..like I like to do..that I might not get the chance to finish properly...I feel like I am so not finished...and maybe I am not. I'm not.

And you out there who are healthy...what are you complaining about? Car is not nice enough? House not big enough? Shoes not the right color? You do not like your job...change it...would like a better relationship with someone? Say something. Say something ...fix it...if you have your health both physical and mental..you have everything..no excuses for the life you lead if you do not like it.

Wasting Our Tax Dollars

2010-12-11T19:33:00.000-08:00

According to the National Conference of State Legislators, California is the only state that provides out state lawmakers with a fleet of new cars at the taxpayers expense...will someone please explain this to me? Why do you get a free car, health insurance forever and a huge pension?? For wasting how much of our money? Please note this is both a Republican and Democrat problem...

Write your state legislators today and let them know that you refuse to pay for this any longer...

You Really Need To Plan

2010-12-11T18:56:00.000-08:00

I am very tired today. Not only did I have a mind bending headache..but I had...had to see clients today and work. I love my job...I enjoy the people I meet...but I was just thinking how if I had planned better financially, that I would not have had to work today..not feeling well at all.... and going through chemo.

So here is your chance...if it is not too late to plan better financially. But you won't...this is why it is so important to plan...You plan..God Laughs...You plan...life interupts..

You get cancer or any other serious illness and you have no savings to speak of..you have no life insurance..maybe no means of long term care...you forgot how life can be so simple. Maybe you had some money saved but it melts away as you spend it on caring for your family...

It is the holiday season..the biggest gift you can give your family is too plan better financially...so when life comes along and gives a big surprise..you are at least prepared financially...It is not the biggest material gift that your kids will really remember...it is how you cared for them and yourself when you all really needed it.

Do your living trust.. especially if you have young children. Have life insurance...it is sending my kids to college...if you are 49 & up investigate long term care insurance so your family can watch a movie with you instead of wiping up your mess, bathing and dressing you.

You will have the chance to do this..until that split second comes..and your chance will be gone...maybe forever.

My Head/My Body

2010-12-11T17:21:00.000-08:00

I know I am suppposed to think of chemo as medicine and do a lot of creative visualization...like think of the tumors just melting away as the drug attacks....or see them blowing up inside my body and totally disappearing,,,I know..

However what I right now is the biggest, most huge, headache that I have ever experienced in my life....someone just please come and remove my head from my shoulders and roll it away to some other state of being!!!! I hope I do not have this headache for all of the months that I will be doing this.....and I hope this works...I am not sure cancer is going to kill me..just the little things along the way that will test my level of pain tolerance and endurance.

And this is just the beginning of the next few months. Cancer may kill me someday but I will not let you take anymore life away from me...I think there is a saying...anything you take from me, I will still figure out how to live without it...and live well..until I just can't anymore...bring it on...I am not going anywhere anytime soon.

There are people that do years of chemo..how do they do that? Am I going to have to do that? Hope not. I am all over the place today in my thoughts...maybe it is chemo brain :).

First Dose Done

2010-12-09T08:13:00.000-08:00

This is my fourth chemo. I have lost my hair twice. I am not sure about this time...I do not mind being bald as a physical appearance however being bald is just very cold. Wigs are very uncomfortable. And what is most bothersome is that when I just wear a hat or just go bald, it can give away my privacy of illness. Many people know that I have cancer however it is just nice that when I walk around on a daily basis that people do not need to know what is going on unless I choose to tell them.

It is kind of like being pregnant...complete strangers think that just because you are pregnant, that they can touch your belly and ask you all kinds of crazy questions. It is the same with cancer.

I finished my first dose yesterday of doxil. I am doing well. I have been told that I may suffer from extreme hand/foot dryness..peeling...time to sleep in lotion, socks and gloves. I will also get a neulasta shot this evening to help keep blood counts up. For those of you who do not know...a way to avoid the bone pain that may accompany the shot..it to take a claritin the day before and after the shot...check with your doctor first of course before doing this however it has worked for me. This was a tip from the chemo nurses. :)

I am going to work now...and always hoping for the best for me and you.

Getting Chemo Right Now

2010-12-08T15:39:00.000-08:00

Wireless in the chemo area here at Cedars...how nice is that :). Yeah! My chest port worked. It is the little things in life....when the port works...when the person doing the stick into your chest knows what he is doing...when the blood flows out for labs....

This chemo area here is new. You have your own space...tv...food...drink..if you have to be here, it is put together well. I do not want to be here and this shit better work. I have not gotten the doxil yet...labs done...just waiting. I have been coming here nine years. I know the nurses...docs...the psychologists...it is nice...they all stopped by to make sure that I was not going crazy...yet. I put up a good front..but I can not express in words how much I can't stand this..but I am here and will make the best of it! Where is the ice cream sundae????? With whip cream and the cherry??? More Later...

Over a Year

2010-12-06T07:22:00.000-08:00

I have now been blogging since Sept 2009. The good news is that I am still here. The bad news is that I am stuck in the same place....still fighting this disease for at least another year...without a break. I start chemo this week. I will take you all with me through the process. Lets hope for great results so I can have a surgery and get this crap off of my pancreas. The other tumors are easy to remove. This one is not. It has to shrink.

So I will be praying, playing, laughing, working, and screaming in my car throughout this process. I hope you will join me :) Getting scheduled this week ....for tomorrow I hope.... as once I make a decision to do something I am the patient with no patience.

Story Tellers

2010-12-05T18:58:00.000-08:00

I have talked about in the past...having your trust in order, and medical buddies. However if you are gone who tells your kids the stories about you? Close family and friends? Who and where are they?

Who tells the kids about when you were a kid? When you got married? When you were at college? When you backpacked through Europe? Who tells them what it was like with the great grandparents? When you got your first job? Your first boy or girlfriend? Who would you like to give your kids advice?

I am the only parent as my ex passed away almost 4 years ago. He was a great Dad and my kids feel the pain of his loss everyday..still. So I decided that my kids need some people around them that know things about me from different times in my life. And if it comes up..they will tell them about me..if they want to know.

They will also help them with whatever they need as time progesses..they know who they are. So think about not only the legal and medical stuff should you not be here. Think about the history of your life and who tell the kids your stories. They will want to hear these stories always...maybe not at first but eventually.

Keeping Busy

2010-12-05T17:36:00.000-08:00

A therapist might say that you must face your illness head on and deal with everything. I would say to that really? Why? What is the point? If you have been dealing with all of this long term (me..9 years)..what exactly should I be facing that I have not already?

If I was not functioning, I could totally understand..however I do everything. I help facilitate a support group. I work. I have fun. I laugh. I cry. And I fully understand the situation that I face. So what is the reason I need to be discussing this and facing what?

I do not like to talk about cancer all that much. I do not need to watch a TV show or movie about it, because unless you have lived it, you can not act it...because you have no idea what it is like to feel it for so long. Look at all of the people who have had it just once? Many of them have a hard time living with it and not even having it anymore. I would love to be one of those people....to have it once and never again. Those are the folks that run around for awhile feeling enlightened until enough time has passed...

So I am comfortable living in denial and making believe that the chemo I will endure for the 4th time is just a little medicine that I need to take for a few months to get rid of these blobs in my body. Then cancer will melt away and I will never have to deal with this again.

It is only in the early, early morning when my eyes open for that split second that I do not remember that I have cancer and then I do. It is such a big disappointment when I remember what the hell is going on in my life :)...but I /we must carry on ..maybe I or you will be the next miracle. I am counting on it. Until then I will keep busy working, laughing, etc so I do not think or face much...and so should you ..:)

Dedicated to Beth & Bruce

2010-12-03T19:48:00.000-08:00

Every once in awhile someone comes along and shows you how to get things done. Thank you Beth and Bruce for teaching me about love, devotion and fighting this insane disease. I am honored to know you. I hope when it is my turn...whenever that is ..that I meet Beth in heaven with everyone else that has gone before me.

I wish I could hug you for a very long time. I do not let myself cry very often however tonight I can not help it. This disease truly sucks!

Daughters

2010-12-02T18:43:00.000-08:00

My daughters will be 21 (yes, I have twins) in two weeks. This blog is for them.

Girls..I love everything about you. I could only change your diapers and they never smelled :). I could stay up all night to care for only you. I can stare into your eyes forever. I want to hug you forever. Even when you really make me angry, I still want your company. I like you too.

I think somtimes about the events I might miss in your life and I cry. I am trying to be there and everywhere. I love when you laugh and smile....I see you in my dreams. I hear your voices. I miss you before I even go anywhere. I want you with me everywhere.

You will go places and see things that will surprise you. I hope you find love and happiness in the simple things in life. I hope you find lovely men to love and that they will return all you have to give. Respect yourself and others. Have a sense of humor!

Always take care of yourself and speak up. Learn the art of negotiation and figure out what is important to you. Have a sense of community.

Always know that I love you..that moving on is important and memories are beautiful even when they are not enough. They will have to do. I know that I have taught you the best I can about whatever I know (whatever that is...haha or LOL). I hope I have helped you. I am not going anywhere for awhile. I just wanted you to know that I love you!

Treatment/ Doctors/Random

2010-12-02T17:50:00.000-08:00

It seems crazy to make a "To Do" list this morning when all I can think about is cancer and how to stay alive. I am at the Cancer Center waiting to see Doctors :). I do not just want to be alive. I want to "LIVE". Being alive and living are two very different things.

What really is living? What is the quality of life that you are looking for? I am looking for a lot. Always. Time is short and I am not sure anymore that I will get it.

I have said this before. I love my Docs and I have been treated with honesty and respect throughout these 9 years. But the "shit is hitting the fan" at the moment and we have some big decisions to make fast. I hope I make the right one.

Doctors are human. One of my Docs said to me once, " I need to know that when I operate on someone that it will improve the quality of their lives and that my surgery will have a positive result". And that is the debate. What exactly is a positive result? How do you know that a miracle might happen and that person may live many more years....maybe not in the same shape as before ..but good enough? What is good enough? How long would you want to be here and in what shape?

By picking a certain path, will you actually extend your life or would you pass away at the same time anyway and had no quality of life during that time? Years ago we just died. Now we fight.

With all the advances in medicine and surgery there are many new issues to deal with as patients and doctors. When is it all too much?

Medicare Issues

2010-12-01T20:18:00.000-08:00

Did you know that if the fraud issue in medicare was fixed...we would have no financial issue concerning this at all...we could even eliminate the donut hole of prescription medication and there would be no reason to pay our fabulous doctors less money and have them choose to leave the medicare program??!!!

Medicare fraud costs us...the American people over 60 billion dollars per year....that number is so hard to comprehend..it could fund a small country and then some. How do we fix this?

For those of you who do not like the idea of any type of socialized medicine..what is your suggestion for an alternative? What would disabled people do and seniors...without medicare? It just needs to be fixed....Write your representatives in goverment to get going on this problem of fraud.

The answer is not cutting programs and paying doctors less money. The answer is just fixing what is broken. What are you folks doing in Washington except fighting with each other and getting nothing done?

What would our seniors do without medicare? Should people who can not work anymore have no medical insurance and no drugs necessary for them to live? Should they go broke and loose their life savings paying for it?

I have an idea....after you are deemed to have no value anymore in our society..we can do the eskimo way that I saw in the movies once...just crawl out on to the ice and die ..this way there is no loss for the group that still has money and can function...what do you think about that?

What are YOU going to do when you are disabled and or old...how will you keep your medical insurance? I would like to know.

When/Where/Ready

2010-11-30T18:27:00.000-08:00

When you have had cancer a long time ...and you need to pick a new line of defense..what do you do? How do you make a plan when there is no right answer? ...When everything you do is a crapshoot?...When your doctors are not sure what to do with you or even if they should do anything with you? When nothing and everything feels right or wrong?....When the thought of next year at this time can seem questionable?...When you are still ready to fight...live ...and dream??

I am ready. I am ready...to keep going ...to fight...the little vacation has been fun....UGH!! More tomorrow...more explanation on everything. This is my therapy..whether you read or not..but I am glad you do. Thank You.

Playing With Fire & Update

2010-11-30T18:06:00.000-08:00

I have had a lot of fun since August and a lot of aggravation. Let's talk about life in general first. I went back to work and really enjoyed that. It made me feel like a "normal" person again. It made me pray that if I could just stay healthy enough...long enough, that I might get a life back...a new one...even living with a little cancer forever. I could deal with that.

My kids are off at college and doing well enough. They worry about me all the time and rightly so. I miss them and I am so proud of them. I had dreamed of this time when I was healthy...thinking I would be healthy forever...that for the first time in years ALL my time would be my own. I had such grandiose plans :)...Most of this time is now spent working and preparing for the next onslaught of chemo, surgery etc. Its a crazy way to live. ...But I am alive.

This is how I seem to live lately...a little free time here or there and then fighting the dragon. I go to a lot of movies which is a great escape. Except I saw "Love & Other Drugs" the other day. I had no idea what it was about!!! It is about two people who fall in love and she has Parkinson's...it also goes into the whole doctor and drug thing...it was a fabulous escape for the 2 hours :). I made up for it by seeing fun.."Burlesque"

Leimyosarcoma seems to be attacking me lately with a vengence...I made it a year with no surgeries...think I will be having one soon and then doing chemo. I am not sure I will ever be free of this anymore. I will continue to fight until I can not anymore. A few years off would be nice. So far it has been 9 years total..the last 4 years straight.

So here we go ..back on the merry go round...I am going to fight ..take each day...I know not where I am going...2 steps forward ...1 step back....more details to follow. I will continue to make plans for the future...as I always have.

I'm Back!

2010-11-30T05:31:00.000-08:00

Many people have been asking why I stopped writing...I have to say, I do not know. I think it is part fear that one day the words will just stop..not because I wanted to stop but because I was dead. I think a lot about death lately.

I try and block these thoughts out ..but they flow into my brain like an uncontrolable flood. I also think about living quite a bit and what I might miss. I think about the present as well. I do still live very much in the present. I love being alive even thought there are so many issues. My next blog will be an update. If you have never read this blog before please start from the beginning...that is where all the good stuff is :)

My Best in this crazy fight! More later today and everyday for the next month.

Blogger's Block

2010-08-22T20:50:00.000-07:00

I have so much on my mind....that I am stuck at the moment. I am not sure whether to discuss the sad state of our healthcare system, me moving yet again...or the fact that I do not like living alone while I am being treated for cancer. So today I am going to say nothing until mid week when I have a handle on my emotions.

I am very angry lately at this whole cancer thing.... I imagine my mood will change during the week...NOT!!!

I am thankful for my energy level..which is quite high at the moment....YAY! I am thankful for my girls doing well in their respective cities and colleges..where did the summer go?

Goodbye Just For Now......

2010-08-15T06:43:00.000-07:00

I am in Indianapolis until tomorrow. I am dropping my daughter at college and then flying back to Los Angeles. Normally this would not be so difficult as I have dropped her at other places and said goodbye for now. I love where she is and I believe she will have one the best times in her life.

But this is diiferent than a normal goodbye because I have cancer and I never know what the next month, or year will bring. Particularly lately this has been quite the battle (as you know if you have been reading this blog for awhile).

So this good bye is filled with wonder and worry as I do not know if this is the best time with this particular daughter that I will ever have. However if you believe in God, sometimes along the way you get true gifts. This trip was one of those as I am in the midst of chemo and did not know if I would be able to make it. I have cancer surrounding my pancreas at the moment. But I got this trip. I ate everything, went everywhere, and had no pain. My body and mind were working together.

I got the chance to schlep (to drag your self or things) :) in the 100 degree heat, her stuff up to her dorm with her. We ran all over town...laughed, hugged and cried. I got that moment of joy and pride that I was looking for. I am petrifed that this is the best shape I will ever be in again. But I got one more moment.

This was my true calm before that ever present storm of fighting cancer on an everyday basis for years. I am not going anywhere anytime soon. I am just not :).

Off blog until After August 20th

2010-08-09T21:49:00.000-07:00

Flying with kid to college....YAY!!! Moving....Living.....Praying...doing chemo (pill form)...making believe I do not have cancer.....working....may be the drug will work....hoping....hoping...hoping....

Have a great August!!!

Shocked......

2010-08-08T07:36:00.000-07:00

This blog is dedicated to a friend I recently had a phone conversation with. She recently got diagnosed for the second time. I felt awful for her. Cancer stinks because you do everything you and the docs think you should do. You stay clean for awhile....maybe years. Your hair grows back. You go back to your regular (or irregular :) ) life....and then bam! It's back.

We discussed the shock and surprise of cancer returning. We did not make it to the hurt, anger, and fear. I told her after nine years I am still the same way. Each and every time this disease has gone to a new place and I do something new medically, I am shocked. I never expect it. I always think I am going to be ok.

I liked what she said at the end of our conversation. She said we feel that way because we expect to live a long time and move on with our lives. We are doing just that...even during the time we have cancer. We are always living even in the midst of chaos. She is my kind of gal :).

Looking

2010-08-04T08:43:00.000-07:00

There are some people in your life that you can not get enough of. You want to look at them forever. You see them in so many different ways....when they were younger and you try to imagine them when they are older. They are so beautiful...no matter what they look like...precious..

They are like a huge fabulously decorated drink on a hot summer's day. You want to sip a little at a time so your drink never runs out...because you are so very thirsty....and the heat is just going to continue....the drink is just about the only thing that you really enjoy at the moment.

You can hug those people forever..literally...and never let go.

My Favorite Time of Day

2010-08-02T21:50:00.000-07:00

My favorite time of day is first thing in the morning. That split second I open my eyes...I do not yet remember that I have cancer. For that second I remember what it was like to just wake up for the day.

I like the night as well. Late at night when time seems to stand still. I am reading a book or watching TV...and I am not thinking of anything much. Its quiet and everything seems ok...even though it is not.

Dear Cancer

2010-08-01T20:51:00.000-07:00

Dear Cancer,

You suck...you have struck again..right when I have to take my daughter to college...right when the momentum is picking up at my business...right when I am starting to make money again...right when I thought I might...might ...just get a life again. Right when I just started to put you in the back of my mind. But I guess you did not like it there. You suck.

So...what will it be this time..little chemo...little surgery..this battle is much longer than I thought it would be. 9 years is a long time. I was 44 when we first met. I did not like you then and I do not like you now. I was so healthy and yet I had a feeling you were there because I was just so tired and my stomach was so bloated.

When I was in my 30's I never thought in million years my life would be like this in my 50's. I am not sure how and why the dice rolls this way...I am not looking for an answer. I am just looking for a break from cancer. I can do the rest myself :).

Our Body Parts

2010-08-01T20:00:00.000-07:00

When you are healthy, you look at your body as a whole. When you have cancer all of sudden your body and it's parts get broken up into pieces.

For example..since cancer has invaded my pancreas..I now think of everything in terms of my pancreas..it's almost like the rest of my body does not exist. I stopped drinking coffee two days ago just for my pancreas. I read that coffee helps to dehydrate the body. Your pancreas hydrates the body and I did not want to over work my already compromised pancreas..so bye bye coffee. I do love coffee and I had the most huge headache from caffiene withdrawal..but it was worth it for my pancreas.

I have also changed my entire diet in the last few days...all for my pancreas. I am now eating an alkaline based diet because my pancreas does not like anything acidic...yes..I am nuts...by the way ...almonds are great...they are alkaline..peanuts are not..they are acidic. :)

Now I feel better starting chemo...my body is well hydrated and on its way to be alkaline based. I actually did do this stuff..no joke...although I am having fun typing it.

I very glad leiomyosarcoma has not traveled to my feet..not sure what I could do there...get a $20 special massage at the mall? By special foot creams?? Get a pedicure???

I hope my pancreas hangs in there so I can drink coffee again :)

Sometimes Life Is Just too Big

2010-07-31T20:36:00.000-07:00

If I am going to write a blog I need to be truthful..or else what a waste of time. I am petrified that I am dying. Not soon...next week or next month...however I am extremely worried about next year. I said it..next year. For the first time in nine years my surgeon has refused a surgery. That is big. He wants to see through chemo...some stability in this disease. He is right...can not keep getting chopped up every few months.

I have cancer on the head and tail of my pancreas. I am petrified. You can not just chop up a pancreas without having issues. I am petrified. I am very sad. I really have not had a break in four years. It has been 9 years....I am not done fighting...however clearly this is a new kind of battle.

This is so big...I miss my old life. I have lost many people these last years. I do not want to join them quite yet.

I Just Hate This!!!

2010-07-27T19:25:00.000-07:00

Dear Everyone,

I hate telling you yet again that I have cancer. I hate making you sad. I hate that you think I am so wonderful just because I am fighting this so hard. I would rather be known for something else...like maybe curing cancer :).

I hate that I feel like I have an office at the hospital rather than at my real office. Actually ...I do not have a real office anymore because I have not worked enough lately to bother having one. I miss my career. Cancer has become my career. That sucks.

I miss being truly joyous. I think I have forgotten how to do that. I can smile and I can laugh..and I can fight cancer...however I would not mind one truly joyous moment...at least one more time. I do joyous really well. I miss my kids being lighthearted...they used to do that really well too. I am not sure I will have another moment. I know they will, even if it takes awhile.

I want you to know I am trying as hard as I can to do this. I can not imagine not being here anymore. I know it is a possibility....and yet I cannot imagine....Cancer just sucks.

You Have to Help Your Doctors

2010-07-27T19:12:00.000-07:00

I am on a mission. I want to find an answer where there is none. It has to be the right answer because if I pick wrong...well that could just ruin everything. So here I sit. Surgery first again...chemo again..again and again. Hmm.

Again..rare cancers stink...not reacting well to chemo, stinks. After doing this for 9 years in a couple of weeks, I am at the helm of my care and my doctors are helping me along. They give me options and then I do lots of research, think about my body and then I do my best.

I hope that body will do its best now. I have been in a battle all day with myself to either do chemo or surgery first. Surgery is winning. I will call tommorrow and make an appointment with the surgeon for Friday to go in and tell him that I would like to do this surgery one more time. Then a few weeks after surgery I am going to start some kind of chemo. I will go into details later.

At first, no one wanted to do surgery however after much reasearch of my specific case and speaking with people who have done this as well....I now feel this is the best thing to do. Surgery would not be happening if I did not speak up. I wish I had a better time with chemo. Historically I do not.

So learn everything about your disease ...your disease..your body and do what you feel is best. No regrets.
Listen to doctors you trust and then listen to yourself. :) It may save and/or prolong your life.

Dear Body 2

2010-07-27T16:30:00.000-07:00

Dear Body,

This is no time to be different!!!!!! Tumors in armpits...and other strange places that are dangerous is not the way "to stand out in the crowd". I will not talk about you anymore. I have so many other things to say. If you want my attention, you better do it in a positive way.

We have a lot of work to do these next 6 months. Let's do it and be done. Please. I do not have the time for this!

Dear Body

2010-07-25T19:58:00.000-07:00

Dear Body,

Hi...it's me...your brain...I have been trying to work with you for a long time. However you are not listening. I am not sure if I really pissed you off or you are just being stubborn. I really need your help right now. I was ok loosing the female parts, my gall bladder, and over 20 tumors in the last 9 years...and even parts of my memory...although that may be due to just being in my 50's :).

Now you have to pay attention and do your job properly or we are both in big trouble. I promise to give you a raise and take better care of you... if you can just cooperate with whatever I have to do next. I know I have not been very good to you sometimes in the past, but that was a long time ago and forgiveness is so important :).

So let's decide to work better together in the future and get rid of this cancer for at least for 5 years or so? Not asking for much really...just a bit of a reprieve so I can collect myself and fight on. I want to fight with you...not against you...

I know you are tired...so am I ...I have a lot more fight left in me however I can not do it without you. I can not stay here without you. We will find out how you are doing tomorrow ...I hope you are still with me.

Shocked, Angry, and Nuts

2010-07-25T10:31:00.000-07:00

Fortunate for me I have never been truly depressed ....I have been shocked, angry, and nuts! I am not sure what my results will be tomorrow but I am already nuts because I am not expecting very good news. I just have this feeling.

And I am just so very sad. It is a different kind of sad than being depressed....depressed means that you can not function and I function quite well. It is a sadness that sits in your soul forever...even when you are laughing....or having a fabulous time. It is just there. So we shall see.

I want to freeze time...so that I see no more needles, tubes, surgeries, radiation and chemo. I do not want to be an endless patient. I do not want to see my body as the enemy. This was not how I pictured my late 40's and 50's...

I know there is always someone with a worse story than mine and my heart breaks for you as well, however this is how I am living at the moment and I am just not sure I will ever escape the whole cancer thing. So I think I better start figuring out how to survive the next couple of years as well as I did the last 9....hmmm

I want to see my kids graduate college. All this is just to scary to think about anymore so I am going to a movie and to walk on the beach :). I am having trouble focusing on things I need to do today...so I am going out to play :). I will work and plan tommorrow..after I see the docs..

The Sad State of our Healthcare System

2010-07-24T21:13:00.000-07:00

It has taken me a long time to think about what I would like to say here as I have written about this before. I have a lot to say. This is not directed at any political party as I am an independent. I am liberal on some issues and very conservative on others. I do believe in God.. even though it may not be the one you believe in. I have been a cancer patient for 9 years next month....9 years ...and the battle is not over...I know people living with cancer for over 20 years...they are living with active disease and they are ill. It can chip away at your life....and it does.

I hear a lot of talk about cancer becoming a "chronic disease". I say to that right now for the most part...bullshit. Maybe it has come to that for a chosen few. In my 9 years there have been very few truly "chronic" cases.   If you look up the word, "chronic" it means living with illness that is NOT life threatening. There is a reason they call it "chronic fatigue syndrom". I do realize it can severly limit your existance for a long time however it is not going to kill you. Cancer still kills people way too often....and they suffer...they go broke ...their lives change forever....

Our medical system is in shambles...really...and frankly the President...any President ...Democrat or Republican can not solve this problem anytime soon. It is very complicated on many levels..

First...as I have said before good health care is a basic right of every American Citizen...No one should loose their healthcare insurance because they are disabled and can not work. No one should go broke and loose their homes because of medical bills.  You should not have to choose between buying medication that you need to live or food. I have seen this with cancer patients and the elderly that have worked their entire lives. It is a heart breaker...should they have nothing because our system is so screwed up?

Second...Health insurance should not be employer based...if you have to leave you job because you are ill you should not loose your insurance. This system may have seemed like a good idea at first and at one time it was, however cost is out of control and how much money are these big health insurance companies earning??   Why should your employer pay for that? Keep in mind as I have said before...I have read that there are 6 health insurance company lobbyists for every Congress person...and why do you think that is? there needs to be a better way to do this.

Third...nothing is really being fixed with the Obama plan..there are a couple of good things but basically it is just a band aid over a system that needs a total re do....with people that have no agenda other than fixing the system...

If we could just get rid of the fraud in medicare, we could fund an entirely new system. There is no quick fix to this...do you really think years of selfishness and neglect on the part of our goverment, banks, and private parties can be fixed in one presidential term of anyone? If you think so you have a simple mind and even more so if you do not look passed our goverment and see what the insurance companies have done over all of these years....do you not find it interesting...the laws regarding suing an HMO? Look them up sometime.

I am so tired of the Tea Party, the Coffee Party, and all of those people who prefer to get everyone emotionally crazy without giving any intelligent solutions to our problems. My Mom used to say,"if you have nothing intelligent to say, do not say anything at all" , and "do not complain unless you have a proper solution to a problem". She was right. Do you think Glenn Beck stays up at night wondering how he is going to pay his medical bills? He is a great actor though..I wish him no harm...I just wish he would think before he speaks, and cries all of the time..but he is making a fortune so I can not blame him...he will not have to worry regarding his medical insurance. :) Nor will Congress..they have a great plan and get to keep theirs forever..even in retirement...both Republican and Democrat..:)

My daughter is studying the 60's right now in her summer school class...remember those days Baby Boomers?? Feminism, Civil Rights movement....people would not accept the injustice they were experiencing at the time...look what happened to us? We have become lazy and worried more about getting old than taking care of the elderly (which we will be soon enough). Maybe it is time for us to take a seat in front of the Health Insurance Companies and just say that we are not going to be treated like this anymore. Maybe it is time..but this time...come up with some solutions as well..Tea Party...Coffee Party...any party...maybe you are complaining to the wrong people??

This is a Better Prayer for Me and Maybe You

2010-07-23T08:05:00.000-07:00

This is an Irish prayer....I love it however I may have a little fun with the words...:)..

May the road rise up to meet you....

This means you should always be going downhill..(this is the truth)...that your life should be free of obstacles..
I like this ...I really do not mind an occassional bump in the road..however lately cancer seems like a huge boulder that has come crashing down from the mountain and landed right by my toes.

I am tempted to find Dorothy and borrow her red shoes...or maybe at least get some help from those guys she hangs out with..:)

May the wind be always at your back...the rain and wind in Ireland is huge. They have lots of floods that ruin the crops. This again refers to few obstacles in your life, as it is always better to have the bad weather behind you. With that being said ...how many times when recovered from your last surgery or chemo, have you just gone out and stood in the pouring rain??? I have done this a few times after being stuck in the hospital. It feels great!

Last...but never least...May God hold you in the Palm of His Hand...Whatever religion you are,,,may God Bless and keep you safe. I like this...I do not know why... who is here and who has to go...I would like to stay for a while longer...Years..please....I like this prayer...

Prayers..sort of..

2010-07-22T19:54:00.000-07:00

I am having an MRI tomorrow of most of my body. This is my prayer for the evening :)

God grant me the serenity to accept things I can not change...

Serenity??? Seriously???? Concerning Cancer???? Are you...*^*^*$#%(*(_ serious!!!

Serenity is something I am not feeling at the moment..:)...I am a bit angry and quite petrified..Serenity...well..maybe next year..and the year after...

Courage to change the things I can....I have lots of courage..I am as strong as an ox...but somehow it is not working :(.....I like courage...:)...the change part...it is a constant in my life lately..I am ok with change...just not the kind that seems to be creeping up on me....screw that change.

And Wisdom to know the Difference....so big &*&)(*)*)* deal...I always know the difference...so how is that helping me at the moment??

A friend sent this to me today..I know she was trying to make me feel better...it didn't...I am not mad at her..just mad at cancer. She does not understand which is fabulous...and thank heaven she has never been sick one day in her life.

I remember those days and I long for them.

CJ

2010-07-18T13:45:00.000-07:00

My friend that has the same cancer as me is in hospice and probably will not be here too much longer. Her blog is attached to mine. This blog is dedicated to CJ and her family.

One of the many things that keep your sanity going through cancer is meeting and communicating with other people like yourself. The outreach with rare cancers has to be a big effort because there are not too many of us around. When we find someone like us and we like each other anyway...we become very fast friends. The normalcy of "getting to know someone" a bit at a time melts away ...it is like an out pouring of words and feelings in an instant. You are hugging someone that you have known for 5 seconds because it is like hugging yourself and them at the same time. Looking at CJ and the hundreds of others I have met over these 9 years is like looking at a piece of myself and them at the same time. I understand ...but I do know why they had to go at that moment....but it breaks my heart and I do not want to be "them" anytime soon. I will miss you CJ.

I can remember everyone I have met along the way, especially the folks that are no longer here. I remember the pain and the realization, the acceptance and not...they were leaving. I do not want to leave. I was not ready for any of them to leave.

You can read CJ's writitngs here. God Bless you CJ. You did the best you could. Cancer sucks...If you are going to have this experience of re inventing yourself....I suggest you find another way to do it. This way is too painful.

Play on Words...contributed by Sharon

2010-07-16T19:37:00.000-07:00

I do not know who wrote this however I am receiving this from Sharon and I just had to put it here...please enjoy...LOL

1. Benign.....what you become after 8

2. Bacteria....back door of the cafeteria

3. Baruim...what you do with dead folks

4. Cesarean Section...a neighborhood in Rome

5. Seisure...a Roman emperor who lived in the Cesarean section

6. GI Series....the world series of military baseball

7. Impotant....distinguished... well known

8. Labor Pain....getting hurt at work

9. Medical Staff...a doctor's cane...maybe with a snake at the end :).

10. Outpatient...someone who has fainted

11. Post operatvie... letter carrier

12. Terminal Illness...Getting sick at the train station

There is humor...everywhere...

Memories

2010-07-14T09:31:00.000-07:00

All at Once
I see family and friends,
I can hear their voices,
They are saying beautiful words that I remember,
They gesture,
I can hear laughter,
I can see tears,
I can feel them with me.

Maybe I am just dreaming.
Maybe they are really with me.
Maybe the feelings lay somewhere in between being tortured by the memories and blessed by them at the same time.

Maybe I am just dreaming.

A Lot about Stuff....

2010-07-13T13:34:00.000-07:00

My friend Wendy's blog is a riot...its about birth, happiness and craziness. I love it. Her topic today is about "boobs"....breast feeding boobs :)...she is a nurse in the Neo Natal Intensive Care Unit or NICU...My twins were in the unit over 20 years ago. One for 4 weeks, the other for 5 weeks. One of my daughters was so healthy I found out the evening nurses were playing with her at night. They gave me a picture they took of her sitting in a cookie jar!!!! (she was only 4 lbs) At first it made me crazy...that they were passing her around so easily without me there..but then I figured there is always someone watching her very carefully!!! :) They were the best! Read Wendy's blog and laugh!

I am feeling a bit "stuck" lately. I am working on moving ahead no matter what. It's like sitting on the edge of a cliff. You are fine and have no intention of falling however you really enjoy just sitting and looking at the immense view. I feel like sitting and having nothing change.

The thing is that change will happen no matter what. You can sit on the cliff and watch or you can take an active part in that change with as much control as you can have....which sometimes is not much :). So as always I must keep moving forward...even when I just want to sit for awhile. I did walk 4 miles today in the summer heat.

I fell like sometimes I am procrastinating when I am writing this blog as I have so much to do! However writing here is better than therapy :) and at least I know I am helping someone somewhere with this crazy disease....I hope. I have more scans coming up in the next couple of weeks. They have to be fine as I need not rest on this cliff any longer.

Life Is a Bowl of Cherries..with pits in the Middle :)

2010-07-11T08:56:00.000-07:00

I love cherries...I could eat them all day long however sometimes the pits get in the way. This is the way life is sometimes...you are rolling along on the surface of things..getting back into the swing of things and a little pit pops up..just to remind you where you have come from, where you do not want to go back to, and how you just want to keep going.

I had this little bump in my armpit..right in the middle of my left armpit and it hurt. An armpit is a weird place to have a bump. I talked to my surgeon about it for a couple of months. It was deemed a "cyst" and not to worry...I did not worry ..however my 6th sense and discomfort told me to get this thing out...I did...day surgery and very simple procedure. I was home in 4 hours. I was working by the afternoon.

I had cancer in my armpit...it traveled from my abdomin to my armpit. This one of the ways cancer tries to just pick away at your life...it's like chinese water torture...a little drip at a time. A little drip at a time is ok...as long as we can get it out!!!

Having cancer spread to such a bizarre place is a little worrisome...I need not be like a cherry anymore...maybe a seedless grape would be better...:)

So here yet again is how you have to advocate for yourself and speak up...even if your doctors tell you that you are being silly...you know your body like no one else...speak up and save your life...be quiet and loose it!!!

Long Term Care/End of Life Issues

2010-07-06T20:57:00.000-07:00

My friend sent me an article the other day about how hospitals end up spending a fortune on their patients during the last months and/or weeks of life on medical things not needing to be done, because the patient is actually dying at this point and should be receiving only hospice care.

The article also touched on the fact that doctors do not deal well with end of life issues. Does anyone? This is such a difficult issue to deal with!!! Number one..most of us do not want to die and we ae going to fight as long as we can. I see this all of the time in long term cancer patients. I have been fighting for 9 years. We always fight and even towards the end we are looking for new things to try and willing to do almost anything to stay alive. I have seen terminal patients trying new drugs up until a week before they are gone. As with the drug Gleevec..you never know when something new will come along and save your life. So this issue of not doing medical stuff to stay alive is a very complex and individual issue.

As for doctors, even oncologists being able to discuss this with their patients is asking a lot. Even as an oncologist you are trained to help people stay alive...not watch them slowly die. That is what many of these docs do. They do the best they can and often they watch their patients slowly die....10's, hundreds, maybe thousands over a period of years...die. That has to take a toll on a person.

I do not think it is your doctor's job to talk to you about dying. I think that is the job of a person professionally trained in "end of life" issues...not your doc. Perhaps I am inventing a new career for a very special type of person. God bless that person. That would be the toughest job.

July 4th and happy almost anniversary

2010-07-04T22:38:00.000-07:00

Last July 4th I was at my friend's beach house watching the fireworks with my boyfriend and others. It was spectacular however I was also awaiting my 8th abdominal surgery due to more tumors, and my Mom had just passed away. I had already stopped eating solid food in prep for this surgery.

This 4th of July I had a relaxing day with a dear friend. I just had surgery where they removed a tiny tumor from my armpit....of all places. Next month will be 9 years of dealing with this crazy disease. I have now been in good shape now since January which was my last major surgery.

How many surgeries can a person have? Really...how many? 5? 10? 15? 20? It seems like I am always wondering...not really worrying...but wondering..I am very tired of cancer. I am very tired of medical procedures on almost a monthly basis...if not a surgery...a scan of some type. It is better then the alternative. :)

I am trying a new diet starting Tuesday...maybe I can keep this all at bay doing a variety of different alternative stuff. I need at least 2 years of peace so I can really get my life back in order. Not asking for much I think...just a couple of years to work hard and enjoy.

The bunny always has the carrot very close even if he does not get it. Sometimes my carrot seems so far away....but I am bound and determined to get the carrot and even the stick it hangs from :)

Alone and Lonely..What's the difference?

2010-06-29T19:38:00.000-07:00

Are you alone in your illness? Are you alone a lot and happy about it? Are you lonely and sad even in a crowded room? Are you lonely even with family surrounding you ...are you getting the support that you need in conversation and in the company that you keep? These may seem like such ridiculous questions..however they are important.

I am very lucky. I am a pretty independant person. I do not mind being alone...and I am alone often. There was a time when I was never alone..not for a minute. My daughters were younger, I had neighbors and friends in and out of my house on a regular basis. I had a great significant other however he had to move out of state due to family issues and we are trying to work that out. :0)...If you are a regular here on my blog you also know that I sold my home and moved into an apartment.

It is not the same as my old neighborhood and living in a house. In my lovely apartment in Los Angeles it is like Fort Knox...no one gets in or out without being watched...:)..and there are no neighbors. Everyone is very private and in their space. That is ok with me for now. I am always busy with work, out and about...I am very social so usually when I get home I am not lonely at all...I am planning the next day and just happy to relax. However at the moment I am not in treatment and I am pretty normal.

So when you are ill...what is your story concerning quality company and support? Are you lonely? Do you have a couple of people just to talk about your illness with? ...People that have had or have cancer that you can compare stories with for emotional and educational support? I know I have talked about his before, but maybe not in this context...of being lonely.

If you need it...exercise the option of seeking those out like yourself. Join a support group at your local Wellness Community, Hospital or where ever you might find one. Get involved in something new if you can. If you are physically able remember that you are not "dead" yet. Your life will go on either way and doing new things will still make you feel better. New things do not need to involve a cancer diagnosis either. I started a business right in the middle of having cancer :)...it helped to keep me going!

Keep moving...exercise anyway that you can...Tai Chi...walking...yoga...does not matter...studies have shown that people who do moderate exercise fare better than those who do not. I did a lot of conga drumming in my first years of diagnosis.

Remember that there are always choices even in illness...get out among the people that can help you. If you are not physically able to do so and need a little company...call the folks you want to be with and get them to you. Remember that sometimes...we have to do the asking ourselves....even when we would rather not. People really want to help...you have to ask...I have learned to ask...even though most of the time..I hate to ask.

Do not choose lonliness.....the more you stay alone ...the less and less you will move forward. If you feel yourself going to a bad place emotionally...get help....especially single people on their own...

Transition 1

2010-06-19T17:52:00.000-07:00

We have gone through lots of transition these last years...some good..a lot of it bad and not within our control. We are still in the midst of it...but in a good way now. Sometimes you have to go through the bad to get to the good? Sometimes.

Sometimes the good just keeps on coming for a long time and sometimes the "bad" does too. Sometimes what keeps you going is the "anticipation" of the "good" to come and stay for awhile....even when it does not.

I am a long time cancer patient (9 years this September). I work with a lot of cancer patients going through illness and huge transitions. It is a hard thing loosing your health little by little...gettting most of it back..then loosing it again..and getting a lot of it back...2 steps forward...three steps back. Multiple surgeries, chemos, etc.

The stories people tell are sometimes unbelievable...did I tell you the time my belly button just squirted blood into the air..like a fountain? Or the time I was wide awake.. while my doctor operated and removed the port a cath from my chest? I can still hear the buzz saw going into my chest :). These are a couple of my stories and they are true. I have more.

I get a lot of calls from new patients. I get a lot of calls from patients that are diagnosed for the 2nd time. They are petrified. It is the 2nd time around folks that I really feel for. It is the realization that cancer may never leave you ....that you will live for the rest of your life fighting this disease....and it could be for many years. It is the realization that this disease might kill you eventually. But not until it "rocks your world" and not in a good way. There is much transition going on here....

Life changes in an instant....in a minute. Transition is usually not a slow thing. It happens with a word or a gesture. Our ability to change and re adjust the way we think and deal with our lives is the only way to survive when the going gets really tough. You must find your way in the midst of so much upheaval.

Learn to find your way. Seek support of those who have gone though all of this before you. We are always willing to help. Take Care of Yourself....as best that you can. More about transition in the blog to come.

Dedicating the next blogs to my Daughters, Other Patients, and Families

2010-06-13T10:02:00.000-07:00

Well it looks like at least, I have a little "Time". I will continue to put back the pieces of my life. In between bouts of sadness, joy, wonder, worry, and procrastination, I forge ahead and hope that the general excitement I feel about change is real. I hope that it is not some kind of temporary "tease" as a window to the life I might be honored to receive, as opposed to the very "patient" life that I might lead in the months to come.

I always dedicate these writings in particular to other patients and caregiviers, however these summer blogs are dedicated in particular to my daughters. We have a lot of change going on this summer. Everyone including me is moving ..all wonderful and full of challenge and promise for the future.

My daughters...I am so very proud of you. You have gone through more than me in these last few years. We lost your Dad and your Grandmother....and me...3 years straight of this crazy cancer. You know I will be scanned again in September...every three months forever...

Despite such huge trials and tribulations you move forward and continue on your paths. Keep going..no matter what....looking forward to the future..Always know that moments of extreme sadness and fear will be followed by moments of joy. Failure and success are just part of life. You have to fail most of the time in order to succeed again.

Time has a way of passing quickly. That is why we must try and take the best advantage of the time we have. It is a gift whether good or bad. It is all we have while we are here. I am so excited to spend this special time with you this summer. Driving through West Texas in August does not thrill me...:)...but like I said...you have to endure a little discomfort to get where you want to be! LOL

I hope that I have taught you a lot of things in all of these years...what to do and what not to do :) (because I have done it) ..that you have taken whatever lessons from both of your parents and that this info will help you in the years to come. Know how loved you are and will always be forever. Let's get this summer started!

YAY!!!!!

2010-06-09T07:24:00.001-07:00

I had decent scans!!! Nothing to worry about!!! Will post more at a later date...

My Best,
Amy

Scanxiety

2010-06-06T09:22:00.000-07:00

Scans tomorrow...moved them up a bit. I need to know what is going on in there. Needless to say I am scared...hate cancer..I do not care who you are... anyone who says they are happy they had cancer even once is nuts in my eyes. With that being said we are always looking for reasons to make sense of things that happen to us so that we can keep going and "live" a good life.....so let's keep trying to make sense of things that have happened to us...even when there is no making sense of anything here on earth. We just keep going...keep trying to live our best lives.

Say prayers with me this eveing that I can wake up on Tuesday and not think about cancer for another 3 months. I feel great however I always have.

My Best,
Amy

Will I get the Carrot?

2010-05-25T15:57:00.000-07:00

I have my scans on June 10th...this is a big deal. If my scans are clean this time around...it means I may have bought myself some real quality time free of disease. It would be 6 months since my last surgery. I walk miles. Life is going well. I am back at work...doing great... and picking up the pieces.

I think a lot about having this "time". I will check in after the 10th. Until then I am going to enjoy :)...I hope you all do as well!

I have been doing this since 2001....I am not going anywhere :). I will get at least a piece of that carrot!

The Walk

2010-05-11T07:48:00.000-07:00

Recovering from over three years of cancer is like going for a long, long, long, walk. At first it is very difficult to get started. Just when you are healthy enough to sit down, take a breath, and relax, that is when the real work has to begin. If you have been reading my blog from the beginning you know it is not just about being a patient for a long time. It is all of the other stuff that comes with it.

You wake up on a cold morning with a sweat suit on and a warm jacket. It is cold and windy. You start walking slow at 6:30 am and get a cup of coffee. As you keep walking, you start to pick up the pace. You go faster. Your coffee is long finished. You heat up and start to peel away the layers of clothing while keeping the pace. The sun comes out and you can feel the breeze against your skin and feels so good. By now you are sweating but you keep going. There is a chill in the air and you are breathing it in until it touches your soul. You have to do that so it will work. :) It has to touch your soul.

The pace has to stay with you even when you stop running and start doing your day. The work is hard. Not your job...but the work of rebuilding after a long illness. The exciting part are all the new things that may come your way...but you have to stay healthy enough to have the time...that is the scary part.

So I am just going to keep walking and running...until I can not do it anymore :)...Run with me.

Trust Your Docs However Still Do the Research!!

2010-04-22T13:10:00.000-07:00

Hi Everyone,

This came up in conversation today. You have to trust your medical professionals. You do not have to like them however you need to trust them and feel comfortable in your treatments. With that being said you still have to do your research, ask questions and advocate for yourself because everyone is different in treatment. What works for one person may not work for the other....so you must be educated in your options. Do not put blinders on and give your control 100% to someone else. It makes YOU feel good to be educated about your medical needs as well...and we need to find things that make us feel good...especially when we feel crazy and sad.

Remember that doctors deal in statistics and science so they might want you to do what everyone else is doing. That is logical and normal to think that way. However Cancer is anything but and we have to be open to the latest research and what may work as well. Continue to keep looking even when your doctor is done. You may end up helping them and future patients as well.

The Bunny, the Carrot, and the Stick

2010-04-02T08:22:00.000-07:00

I will not be blogging too much in April. I will be traveling, working, and trying to put back a few pieces of my life while I have the time :). So this is the story of the bunny, the carrot, and the stick. As you can imagine, I am the bunny. The carrot of course is tied up in the air to the stick and I am chasing it....will I catch it? Or will I forever chase it.. never really getting the prize.

All the prize is...is at least a couple of years free of cancer. I can do the rest myself. I am not asking for too much..just a little "free" time. There are those that think I have already had this time... being here fighting for over 8 years however I do not feel that I am quite finished yet.

So here I go..running as much as I can for as long as I can...all over the place...let's see what happens :)

Illegal Post

2010-03-31T10:06:00.000-07:00

I do not support or endorse the last comment on my blog if you read it. Very sorry that people have their own agendas and are starting to post crazy things. People...cut it out! No crazy cures for cancer or diet pills

My apologies.
Amy