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!

Lost my way - FOR A DAY

On the day Michael Jackson and Farrah Fawcett died, I went in for an elective hysterectomy.  I woke up with news that they found a fist sized tumor wrapped around my ureter.  They called in a very competent surgeon who removed it.  They thought it was benign.  Little did they know it was a very rare cancer called Leiomyosarcoma.  They also didn't know that Leio needs to be taken out whole.  With clear margins.  The fact that he took it out in pieces put me on the path I am on today.

It spread.  Some metastasis on my liver and lungs.  Stage IV.  In the 4 years since my initial diagnosis I have had two rounds of IV chemotherapy.  Gem/Tax which I was very allergic to so they loaded me up on steroids.  I only made it through 3 rounds out of 4 because my lungs started crystalizing.  Then a clinical trial with Doxirubicn and a new drug called Threshold.  Did well on that.  But later on realized the Doxi had hurt my heart.  Then I went in for an 7 hour surgery where they removed a recurrent tumor on my ureter.  They took the ureter and reconstructed a new one with bowel tissue.  They also cut out some mets on my liver.

I gained 22 pounds in the hospital.  Fluids that were going in but not going out.  Then I went to stay with my mother.  Slept all the time and immediately lost 50 pounds in a month.  I was gaunt.  Weak.  It took two full months to recover.

I've had a tumor removed thorascopically from my lung.  I've had two radio frequency ablations on my liver which zapped tumors.  I've been taking an oral chemo drug for over a year and now they want me to change chemos to try to shrink a recurrent tumor which is growing in my abdomen.

When I went to Mayo this last week I realized I thought about dying again.  The doctors hadn't seen me in over a year and could not believe how healthy I looked.

They don't know me.  I have gone from a mother of three to a grandmother of FOUR!  The thought of my grandchildren not knowing me had me lamenting a lot!!  It didn't help that I was watching Private Practice on Netflix and every single episode had some crisis and people dying.  I cried several times while watching.

I realized I did my best when I was doing the healthy things like taking massive amounts of Vitamin C and Magnesium and Calcium and Ubiquitol and Vitamin D and juicing fresh fruits and vegetables and eating raw vegan.

I am going to go right back to this!  This is the way I will live.

I lost my way - FOR A DAY!!  I will stop living in denial and realize if it is to be it is up to me!!!

Customer Service RANT!! I am NOT happy!!!

I owned a business for 17 years.  During that time I learned that in order to keep customers and grow your business, you need to gain customers and keep them.  Keep them with exceptional customer service and going the extra mile in order to turn them into loyal, good will ambassadors for your company.

Last year in August I put a $750 deposit down at the Events Center West in WDM for an event in July 2013.  In October I called and said the event was off and I would like my deposit back.  That was 9 months before the event.  The manager told me the only way I would get my deposit back was if they rented the space out for that day.  Well that time has come and gone and I have received no money back.  I don't know about you but $750 is a LOT of money for me.  I told her I use social media a lot and could really give them some great public relations.  I also talk a lot and the word of mouth kudos I would give them would be invaluable.  I didn't, however, threaten her in any way and tell her that I could also do harm to her business by informing the public of their strict policies.

She did tell me that if I book another event there I can put the $750 towards THAT event.

Well, I'm here to tell you that in this economy and in this day and age it is not wise to make the customer angry.  There is nothing worse for business than disappointing a customer.

I've seen it over and over again.  The businesses that do everything in their power to exceed the customer's expectations are the ones who flourish and succeed!!

I AM NOT A HAPPY CAMPER!!  READ THE FINE PRINT IN CONTRACTS THAT YOU SIGN.  I cancelled a number of other things as well,  Caterer.  No fine.  Church.  No fine.  Everyone was very gracious and asked me to come back if they ever had another event.

I did.  I went right back to HyVee to cater my daughter's graduation open house.  In fact, when I told her about the Events Center West fiasco, she gave me 10% off!!  You can bet I will use HyVee over and over again.  But Event's Center West?  I cannot guarantee even with the promise of the $750 being taken off my bill that I will return.  They basically have held captive $750 of my hard earned cash!!

Buyer Beware!!!!

Then I told her of a couple of people I have worked with.  People that through me and my positive ratings have gained so much more business because of it.  I'm not trying to pat myself on the back, I told her I was an Influencer.  That person who makes a point of telling everybody what a good experience I had.  I like helping people out.  But don't disappoint me.  Not only will I not come back to you, but I will warn everyone I know to beware of questionable business practices!!

Enough Said!

Crazy Weekend

So I was telling you about my CT scan which the Des Moines oncs thought showed a 2 inch tumor and the Mayo people thought it might be scar tissue, WELL............

Thursday night I scarfed down some sushi and later that night I had the worst gut ache.  I figured I ate some bad sushi and went to bed to try to sleep it off.  Woke up Friday and still had a horrible stomach ache.  I ordered an Iced Latte at Starbucks and every time I took a sip my stomach seemed to expand.  I had an appointment and called my friend to cancel it.  I told him I thought I might have eaten some bad sushi.

Later on Friday I was so bloated and uncomfortable and I noticed I couldn't pass any gas.  I knew this wasn't right so I decided to call the doc.  Should I call my family doc or my oncologist or the team at Mayo.  I called my oncologist and they told me to come down and get an X ray.

I did and it showed a blockage in my intestine.  So I got admitted to the hospital.  I was anticipating some surgery and that wasn't good!!  If I did do surgery I wanted the team at Mayo to perform it since they did the last one and "knew" my insides.

Well, later that night (at 11 pm) they wheeled me through a quiet Methodist hospital and performed a contrast CT scan on me.  It showed I did not have a complete blockage but a narrowing in my intestines.  The narrowing is right where I had surgery in 2011.  It was where the CT scan showed a "tumor" or scar tissue.

So I stayed in the hospital all weekend eating cream of wheat and custard and ice cream and jello.  They cheered when I passed gas and had a bowel movement!!  Finally they let me out on Monday.

So I go back to Mayo on July 11/12 to visit with the Sarcoma Team.  We shall see what they want to do.  The consensus in Des Moines was that NO ONE wanted to operate on my abdomen considering the amount of surgeries I have had.  My stomach literally looks like I was slashed with a knife several times.  I am one scarred lady!!  I guess no tummy tuck for me although if I am ever declared cancer free I may do it as a celebration!!!

So that is what happened this weekend.  Out of left field I end up in the hospital.  I'm a very tough person but those pains are NOT fun!!