What ethnicity are you? And who am I?

This blog has nothing to do with cancer.  It's about who I am.

I'm watching Downton Abbey last night and there's a scene where a suitor of one of the aristocratic daughters can move to Germany, become a citizen and then he will be able to divorce his wife so he can marry her.  This is 1920s England.  The woman states that the Germans are the most hated people in the world.

After Christmas dinner my Aunt Karen and Uncle Alan came over and we were talking about World War 1 and 2.  I was embarrassed at my lack of knowledge of the first war especially.  As we were talking we went on and on about how the war went and it was quite interesting.  In fact, I am just cracking open a book Karen ordered for me on Russian history.  All quite fascinating.  Apparently the Germans were the aggressors in both wars.

Then for the last few days I've been watching The Sopranos on HBO.  The whole show is mobster Italian television and I am very interested in their extreme New Jersey/Italian ways.  They exude Italian.  My friend Mary Sutera and her whole family exuded Italian culture.  Their mother cooked huge dinners of authentic Italian food.  They all "look" Italian.  Brown eyes.  Dark complexion.  They should.  Their parents immigrated here from Sicily.

My brother and his family are embracing his Native American heritage.  Learning some of the language. Meeting lots of family and friends.  Learning the ways of the Lakota.

I'm a person who really doesn't seem very ethnic to myself.  If someone would ask I would say I am of European descent.  I have English and Irish and German in me.  So I ask you.  If the Germans were the most hated people in the world back between the first and second World Wars, could that have robed me of some of my ethnicity?  Were German Americans afraid to admit they were from Germany because people may have looked down on them because of it??  My husband has Danish heritage and they embrace it with traditional recipes and dancing around the Christmas tree.

We don't really have any German things we do.  Or English.  Or Irish.  My Channell family has been doing a lot of ancestry searches and we find a lot of English.  My dad's mom's maiden name was Popplewell and everywhere we look we see English, English, English.  I relate to that.  I embraced London when I visited.  I felt "home."  But Germany??  I just don't know much about it and I'm sad that the Third Reich and the axis were such aggressive people and did so many heinous things that I haven't been able to embrace that part of myself.

My grandmother was a Schultz.  German.  My daughters have German on the other side as well.  Von Rhein.  Maybe a fact finding trip to Germany is in order.  Maybe I'll try to make some schnitzel and some warm German potato salad……Just a thought.

The End of a Year of Blogging

Yes, I started this blog a year (almost) ago!  The blog of a woman with a big mouth who is scared to death!

I told my mother having Leiomyosarcoma is like being on death row.  You know the time will come when you will probably be executed.  There is always this nagging fear in the back of your mind.  "Will I be here in a year?"  "Will I make it through surgery?"  I'm scared.

Today I looked at pictures of my grandkids and it brought a tear to my eyes.  I may not see them grow up.  They are just starting their journey.  Me?  So iffy.

I don't know of many people who beat this cancer.  It doesn't seem to go away.  It may lie dormant for awhile but everyone I know seems to get it back.  I am on a "list" on the web of people and caretakers with this disease.  Everyone signs their posts with their "stuff."  The year they were diagnosed.  The chemos they've done.  The surgeries they have had.  The recurrences.  So happy for the people who have NED (no evidence of disease) on their signature.  But most, after awhile, end up with a spot on their lungs or liver and it ALL starts again.

Me?  I've never been NED.  It all started with my initial surgery.  You cannot cut away at this cancer or it spreads.  They did.  It did.

On January 17, I go in for another major surgery.  A month later I go in for a lung surgery.  Four days later I go in for another lung surgery.  Another chance at NED.

I'm serving my body up on a platter, Lord!!  I'm giving it up!  All the prayers, all the determination, all the supplements, all the healthy diet.  I'm giving it to you!!  2014!!  The year where I try to give it to you, Lord!  YOU are the only thing I cling to.  I've been fighting for so long.  I'm tired.  I'm scared.  I'm sad.  Please help me get through this.

I'd like a "do over."

Oh, to be able to go back 40 years and eat an apple.  To not drink pop.  Too not drink beer.  To not be 16 and think it was cool to smoke.  Oh, to actually try to do those physical activities.  Play some sports. Hey, they begged me to be on the basketball and volleyball teams.  Nope.  Not interested.

A man I talked to on the phone said to me, "It's easier to prevent cancer than it is to combat it once you've got it."  People learn from my mistakes!

Unfortunately that is not how life works.  You just do until something undoes you.

I talked to a friend today who just lost her father.  Of course she is reeling from the shock of losing her dad.  He died 10 months to the day of his diagnosis.  I asked her, "if you had to do it over again, do you think he should have done the chemo?"  She said NO!  I agree.  This man did what most of us cancer patients do.  We fight!  "Give me the chemo!1  I'm gonna beat this thing!!"  But what did it do?  It made all the months of his life miserable.  He was sick and bedridden.  Yes, he never recovered from the chemo.  It held him down until his body wore out.

I've been battling this "dragon" for over 4 years.  It has wore me down.  My body is not as strong as it once was.  I beg the cardiologist to "do" something to make me have the energy I once had.  I ran around today, cooked some food, did a little cleaning and I sat down,  Done.  Never would I have done that in the past.  I would have prepared a couple days in advance so I didn't have so much to do.  My mom came over and folded a pile of clothes which had been on the couch, I'd say for two weeks.  Just too darn tired to address it.

Life is a series of tests.  Pass some.  Fail some.

Talking to Chelsea this week and we pinned down something that has happened to me.  I've changed.  And not always in good ways.  Maybe growth but the way I handle them are not always good.  Before I got sick I could pretty much handle anything.  You throw something my way and make me feel guilty enough, I'd add it to my already busy schedule.  You owe me money?  A simple excuse or even silence on the issue was never addressed by me.  Door Mat Kelly.  Stick it to me.  I'll take it.  I could hold the weight of the world on my shoulders.  I got a bit sarcastic after being used and abused for so long but I could handle it.  Then I got THE diagnosis.  Snap!!  Something inside me turned upside down.  My filter popped off.  I noticed things I had never noticed before like flocks of birds.  Stars.  Flowers.  It was wonderment!  I also got irritated.  "Hey!!  You owe me some money and I want it back!!!!"  "Hey!!  Mrs. Nice Guy doesn't live here anymore!!"

I got pushed back.  I called people out and got verbally abused in return.  I've figured something out.  The louder people protest and the meaner they are to you verbally, is a way for them to try to force you back into the Nice Guy box.

I went to a support group at John Stoddard and the other participants agreed with me.  Their reactions to stupid things are no longer met with a smile and a nod.  Now they might say to someone, "oh yeah?  How's that working for you?"  Or, "can you clarify what you meant by that last statement?"  Oh, the freedom of not letting people act and be ridiculous and just smiling at them.  Oh, we live in a world where people think they can get away with things by simply lying about them.  Or stretching the truth.  To witness someone you know blatantly lie.  Don't you want to call them out????  Would you??

These are some of the things I've been thinking about.  Chemo?  Bad stuff.  Being real could be good or bad.  Standing up for yourself is good.  Getting there might be a bumpy road.  Preventing cancer is a good thing.  Denial is a bad thing.  Reaction to things shouldn't swing so far to the right or to the left.  A few deep breaths should help.  Yoga is my new way to exercise.  I think.

Running in the dark and chasing peace and tranquility

Lately I have been having lots of dreams.  Regret dreams mostly.  I wake up wishing everything was ok.

My last appointment at Mayo showed 3 spots on my lungs.  Every time I have "new" anything I think I panic a little more.  I realize that they have tried so many things on me.  They seem to work.  However, they are reluctant to do the one thing I think I need them to do the most.  Surgery.

Here is my reasoning.

Awhile back I was starving so I ran into Hyvee and picked up a package of sushi.  I went out to the car and scarfed down the whole box before I got on the road.  If you are a sushi fan, you know you can't really eat it while driving.

So that night I started cramping up.  I was in total pain.  The next morning I was writhing in pain so I called my oncologist.  He was gone but his colleague admitted me into the hospital with a probable intestinal blockage.  I was in the hospital for 5 days.  They gave me morphine for the pain.  CT scan to see if I needed surgery.  They eventually found out I had a narrowing of my intestine, not a blockage.

So since then I have had blockages twice.  I knew it wasn't a total blockage because I could feel rumbling below the area of blockage.  So I took sips of water to force the blockage through.  Eventually both passed but for 3 days after that I felt like I had been beaten in the stomach with a bat.

Tomorrow I call the oncologist.  My reasoning is this.  What if I have a total blockage due to the tumor and I have to have emergency surgery here in Des Moines?  The surgical team from Mayo did all my major surgery and I would think they would be better qualified to fix an area that they have already had a hand in surgically correcting.

They don't want to do surgery.  I don't want to have intestinal blockages.

I feel like a whiner just about now because I am running scared.  All I can think of is worse case scenarios.

I have this recurring thought.  Why, if I have thousands of people praying for me, do I not get healed?  I guess everyone with cancer thinks the same thing.  Looking up to the sky, "Why don't you heal me, God??  I will proclaim to the world that I am healed."  I truly think I am healed and then I get a bad report.  What do I have to do??

People around me want me to act like nothing is wrong.  I feel I am always pushed to try to be normal.  Maybe that is why I appreciate going places alone.  I don't have to worry about people pushing me all the time.  I have no dogs, no cats, no BODY who is pressuring me.  I call it running scared!!  I love the peace and quiet of having no one around me.

Don't get me wrong, I love people and I love my family the most.  I guess I'm just wanting a little empathy.

Remembered my password!!! Reflections on my stay in the hospital.

I'm laying in bed feeling a burst of happiness.  Yes, happiness!!!  Last week I was in the hospital gasping for breath.

I have had three different chemos since my initial diagnosis on June 1, 2009.  The first, Gem/Tax I was allergic to and it crystallized my lungs.  I only took 3 out of 4 rounds when they had to take me off it.  After that horrible experience, I was bald and sick and found out my cancer had spread despite everything.  I had cancer in my lung and in my liver.  Stage IV.  Pretty ominous, huh?

So then my hair started to grow back.  I had a curly buzz cut.  Then I went on a clinical trial at Mayo.  They did the adriamyacin (the red devil - it is actually a red liquid that they manually "push" into your port (yes, I had had a port installed so I didn't have to have an IV.)  Whoever invented the port should be a gazillionaire because it is the best invention a cancer patient could ever have!

My friends had a benefit for me in Papiliion, NE.  My hair was falling out that night.  By the next day most of it was gone.  Itchy little hairs all over my pillows.  I felt loved.

The clinical trial worked until Christmas 2010.  I went up to Mayo for surgery in January 2011.  I will call 2011 the year of the surgical intervention for me.  The first MAJOR surgery took me a good two months to recover.  I mean, literally.  I couldn't walk up the stairs.  I lost so much weight.  I looked awful!!  Then in July I had a walnut sized tumor removed from my lung.  Then in September I had a couple spots nuked off my liver.

Meanwhile my hair started growing.  I have been bald twice.  Now my chemo curls are gone.  I'm back to wavy for the first time in this 4 year battle.

Then I went on Temodar which is a brain tumor drug.  It was super expensive but seemed to work and I had a pretty good quality of life.  I was on it almost a year and a half.

A tumor grew on my intestine area right back where this all started.  They call it the retroperitoneal.  Anyway, they wanted to do another chemo before they tried surgical intervention again.

Well, if you've been around facebook the last couple weeks you know that was a DEBACLE!  From day one of the Votrient I had side effects.  If you look up the side effects on Votrient, you will see my picture next to it.  Headaches.  Blurred vision.  Depression.  Heaviness in my chest.  Difficulty breathing.  In 3 short weeks my heart went from 50% function to 28%.  I felt like I might be dying.  I really wondered if this is what it felt like to slide down into no return.

But thanks to the docs, I'm on the mend.  I'm feeling happy today.  I go to Europe in a couple weeks, I'll come home and set up surgery.  I'm gonna eat healthy and kick this cancer in it's YOU KNOW WHAT!!!

Futulity

For the last few days I have had this feeling of futility:

futile·ness n.

Synonyms: futile, barren, bootless, fruitless, unavailing, useless, vain
These adjectives mean producing no result or effect: a futile effort; a barren search; bootless entreaties; fruitless labors; an unavailing attempt; a useless discussion; vain regrets.

I have been trying to fight this sickness over and over and over again.  It seems LMS has a mind of its own and no matter how you batter it with chemo, surgery, diet, etc. it never goes away.  I find myself frustrated because no matter what I do, I am faced with the same predicament.

I've also had this feeling in my personal life as well.   I allow dysfunction to affect me.  It brings me to a place where I have to step back and think about why I allow things that are not good for my health to happen repetitively. 

I know for a fact that stress is a very bad thing for people fighting illness.  Unfortunately there are so many stressors in my life.  I've decided I've got to address them and not fall into old patterns.

Someone I was talking to the other day reminded me of the definition of Insanity.

Doing the same things over and over again and expecting different results is the definition of INSANITY!!!

I have allowed myself to fall into patterns which do not prove useful to me and for some reason I think it will turn out differently every single time and it never does.

I realized, the person was right.  I am INSANE!

How do you muster the strength to put an end to the dysfunction?  How do you move on something that you know will be uncomfortable but it is the only thing that can remove you from the dysfunction?

Am I afraid that I might hurt someone else?  Am I afraid of the unknown?  What am I afraid of?  I only have one life to live and in order to live a better life, I have to be somewhat selfish when i make decisions that will affect my health in the long run.

What are the patterns in your life which are not useful?  How can we all make better choices and move forward when the status quo is somewhat comfortable?

Running Scared

I realized something in the last couple days.  Whenever something "new" happens in my cancer fight, I run scared.  The last time they wanted to start me on the Temodar chemotherapy I ran to Cancer Treatment Center of America, to Iowa City and back home.  My oncologist at Mayo said Temodoa and everyone else said it, too.  After I ran, I agreed to start it.

That's what is happening now.  My oncologist in DM, Matt Hill told me I needed to have surgery to remove the new (notice the word - NEW?) tumor.  I ran to Mayo to talk to the surgeons who already knew my abdomen to see if they would do the surgery.  Instead of surgery, the Sarcoma specialist told me he'd like to put off surgery and change up my chemo.

However, then he didn't prescribe it.  I called up to Mayo and they told me to have my hometown onc prescribe it.  Doc Hill said no, that he wanted to see notes are other supporting evidence for the change.  Meanwhile tic toc, tic toc, the clock is ticking and I am no closer to getting the chemo.  My oncologist was able to squeeze me in today so the prescription has been sent, but who knows if the insurance is going to balk since they just sent me a pricey refill of the last drug and will not let me return it even though I haven't even opened it yet.  So I wait.

Meanwhile, my patience is thin.  I posted something on facebook about people needing me to be all things to all people.  I snapped at my husband.  I realized I am scared.  This is the time I need TLC.  I don't need my loved ones to need me to be strong.  I need my loved ones to be strong for me.  If we all start leaning on each other and there is no one to stand, we will all fall.

I run scared.

Yes, I am a very strong willed woman.  Yes, I would even call me stronger than most.  But just once I want my family to understand that I am at my weakest right now.  I am at my weakest when my cancer rears it's ugly head and they need me.  I can't be there.  I need them to hold me up!

I decided I need to work.  I need some kind of thing to focus on.  I need to feel like I am doing something beside sitting around being available to everyone all the time.  I want to go talk to people.  I want to use my skills.  I want to be normal again!!

I have a call into Dr. Lorentzen.  I want her to help.  I want to get rid of this cancer once and for all and I think I am going to need to go on an all out attack.  I'm ready!