Susan WonderStone's Blog

Short video of me in full body hyperthermia

Inspiration from Trans Siberian Orchestra

I have so much I want to get done today. I’ve done several loads of laundry…I only washed/dried them…they’re in a big pile on the guest room bed, with the previous several loads. I won’t bore you with my cleaning details, but thought the best way to get more done was to put in some of my favorite music. I found some of my Trans Siberian Orchestra cd’s. I love their music! I’m so excited about going to the concert this Saturday! Funny how certain things can bring back memories we’ve forgotten.

 

My friend Dan took me to see TSO several years ago. The cancer was in my liver, lymphatic system, all over my skin and a new lump in my head had recently appeared. The perfect Christmas present for me! I loved the concert! So many things went through my head. Good and bad. My dad died from kidney cancer in 1998, 5 months after his diagnosis. I was closer to my family than most people I know, but didn’t want them to see me as sick as I was. I wanted people to remember me healthy, not sick and dying. I wasn’t working, so I didn’t have the money to go to Dallas for Christmas anyway. Even now, when I hear their song “She’s coming home” I relate it to dying, not going home to see family.

 

As I listen to the cd now, I’m not thinking about the music, the lazers, the explosions, the dancing… I’m thinking about how bad I wanted to be able to take Cameron to a TSO concert. There wouldn’t be another one for a year. The doctors said I wouldn’t make it a year. The statistics showed nobody else had made it a year. I cried throughout the concert, thinking about all the things I would never do with Cameron.

BUL*SH*T! I changed what I was thinking. I pretended the energy and power from the music was healing my body. I believed I was the only one who could determine my expiration date! The concert made me feel good. I thought about good times I had with my family and my dad when he was still alive. I was going to keep doing the things I was doing to attempt to get well. My new goal was to still be alive and take Cameron to the concert the following year. I didn’t have to know how it would happen, I just had to believe it would and do everything in my power to make it happen.

 

Yes, the following November, I was still alive. The cancer was still alive too. Even though it was several years past the expiration date I was given, I still had the thoughts in my head that I couldn’t make plans more than 3 months out. I felt like taking Cameron to the concert would be something he would remember for the rest of his life. I couldn’t think of anything else that would be as memorable as being silly “headbanging” with mom at TSO.

 

Apparently I just needed to write and cry. All better now Once again, excited about the concert this Saturday! I can’t wait. I’m alive and well, cancer or not…doesn’t matter. I love my life! I do things that make me happy and have fun every day!

 

 

I got a message this morning that a friend of a friend has terminal cancer. Welcome to my world. Hey, my world isn’t so bad! As I’ve said before, terminal only means your doctor’s knowledge and ability to help you has been terminated. It’s rare that any problem only has one solution. And there’s a solution to every problem. As bad as it’s been, the cancer has taught me some of the most powerful lessons! Find the blessings in everything!

Love, Gratitude and Blessings

Susan

Wonder Woman at Seafair 2011

Seafair Sunday 2011.

I was unsuccessful at getting the day off, so I convinced myself I didn’t want to go anyway. Just for the heck of it, I asked my supervisor if I could have my last 4 hours off. A few minutes later, she sent me a message saying my 4 hours off was approved. Now, I could still make it to Seafair before everyone left. Cameron said he didn’t want to go until I texted him and told him I was wearing my WonderWoman outfit. He has observed people watching me since I started wearing it, back when he was in kindergarten. He loves seeing the smiles, laughter and hugging. A few years ago he even asked me to help him make a “FREE HUGS” sign. He took it to the Lighthouse Festival both of the last 2 years and hugged hundreds of people. He understands how good it feels to contribute to joy and happiness. Even the people who think it’s weird tell other people what they saw. I create communication. It makes people question…? Lots of things happened at Seafair. Mostly good, but some had me questioning things myself. Usually I don’t care when people criticize me. For whatever reason, it bothered me when one person put me down. It wasn’t until I looked back and realized she was condescending to everyone around, that I was more sad for her than I was upset.

 

Most people have fun when my WonderWoman self shows up to their party. Few know what I’m dealing with. I don’t know why I tell the people I do, but sometimes feel like whoever I’m talking to needs to know I’ve had terminal cancer for 7 ½ years. People need to know a terminal diagnosis only means the doctor’s knowledge has been terminated. Nobody has the right to tell me when my expiration date is. I don’t go by statistics. My belief system is bigger than that!

Love, gratitude and blessings

Susan

Memories will take the place of me

I’ve been away from Toastmasters for almost 15 years.  Tomorrow is my first speech since being back.  Two months after I broke my back, 9 skydivers and the pilot from Skydive Snohomish died in a plane crash.  I had met several of them in my short time there.  Having terminal cancer, many of the people I’ve met in the hospital had already died.  Why was I welcomed like family into this skydiving community only to have 10 more deaths?  At the memorial service, one of the mom’s read “When tomorrow starts without me”

When tomorrow starts without me

And I’m not there to see;
If the sun should rise and find your eyes
All filled with tears for me.
I wish so much you wouldn’t cry
The way you did today;
While thinking of the many things

We didn’t get to say.

I know how much you love me

As much as I love you;

And each time that you think of me,

I know you’ll miss me too.

But when tomorrow starts without me

Please try to understand,

That an angel came and called my name

And took me by the hand.

She said my place was ready

In heaven far above;

And that I’d have to leave behind,

All those I dearly love.

But as I turned to walk away,

A tear fell from my eye;

For all my life, I’d always thought

I didn’t want to die.

I had so much to live for,

So much yet to do;

It seemed almost impossible,

That I was leaving you.

I thought of all the yesterdays,

The good ones and the bad;

I thought of all the love we shared,

And all the fun we had.

If I could relive yesterday

Just even for awhile,

I’d say goodbye and kiss you

And maybe see you smile.

But then I fully realized

That this could never be;

For emptiness and memories

Would take the place of me.

And when I thought of worldly things

I might miss come tomorrow;

I thought of you, and when I did,

My heart was filled with sorrow.

But when I walked through heaven’s gates

I felt so much at home;

When God looked down and smiled at me

From His great golden throne.

He said, “This is eternity

And all I’ve promised you;

Today your life on earth is past,

But here it all starts anew.”

“I promise no tomorrow,

But today will always last;

And since each day’s the same day,

There’s no longing for the past.”

“But you have been so faithful,

So trusting and so true;

Though at times you did do things,

You knew you shouldn’t do.”

“But you have been forgiven

And now at last you’re free;

So won’t you take my hand

And share my life with me?”

So when tomorrow starts without me,

Don’t think we’re far apart

For every time you think of me,

I’m right here in your heart.

I had tears streaming down my face as she read it.  I don’t know how she did it.  To his day, I still can’t read it without crying.  That’s not my idea of heaven.   Nobody knows which tomorrow will start without them unless they take control of that themselves.  Regardless of the relationship, I try to make things right by the end of each day.  There are people who refuse to let things go and I can’t help that.  Someday will start without me.  I don’t expect that to be soon. 

“Memories would take the place of me”

What memories do I want people to have of me?  I want people to smile or laugh when they think of me… I want to inspire people to do more with their lives.  I want people to love the people in their circle more, and expand that circle.  I want people to find things to be happy about. 

So, what does this have to do with my speech?  I don’t have a clue.  I’ve read the poem several times this morning.  I haven’t done it without crying.  I’m pretty sure it’s not possible.  I need to get my intro and title to the Toastmaster soon.  Wish me luck.  I love you all!

Love, gratitude and blessings, 

Susan

Long story short

You’re mad because the “negative” things I said about you…you believe to be true. If you didn’t, you wouldn’t care. I still love you…even though you’re a turd

I hiked to the top of Mt Si for my weekend adventure this week.  Lots to tell about the hike, but one thing sticks out the most.  Just after reaching the top, before taking pictures and really taking in the view, my phone rang.  I recognized it as a school district phone number.  It was 3:23pm.  My kid is in track after school.  I answered the phone.  It was the school nurse.  My heart rate went up.  She asked if I was sitting down.  “No”, I answered. She asked if I was driving. “No”, I answered.  So many things were going through my mind.  Did he biff the hurdle and break an arm?  A leg?  Bleeding from road rash?  A head injury?  I was 50 miles away from the school, 4,200 feet elevation to descend over 4 miles to the parking lot.   I couldn’t do anything from where I was.  I asked her what was going on. 

She proceeded to tell me that often times in the class after lunch, my kid has to hurry out of class to go to the bathroom.  “Really?” I asked, hopefully in a sarcastic tone.  I told her he probably has to poop.  She wanted to know if he had medical problems that would cause this.  I was wondering if this was a prank…was I getting Punk’d? Was she looking for a “diagnosis” to put in his permanent school record? 
I’m thinking she’s calling to tell me my kid is hurt, but she’s only calling to tell me he poops after lunch.  I told her I’ve taught him that when he has to go, he needs to go.  I was a little dumbfounded I was getting a call telling me my kid poops.  I’m pretty sure all healthy babies poop shortly after they eat.  Every time they eat.  Somewhere along the way, someone has told them they have to wait.  The longer you wait to take out the garbage, the more it stinks.  A healthy digestive system eliminates on a regular basis.
  I told him he has my permission to poop in the garbage can if he’s ever told he can’t go when he needs to.  Not sure if I need to alert the school or let them find out on their own. 

Departure from Seatac

I took a friend to the airport this morning. I went to bed early, knowing I had to get up at 2am. I never sleep well before I go on a trip, but didn’t think it would be a problem, just dropping someone off. I woke up crying around midnight, not feeling well. I don’t remember having an upsetting dream and had no idea what was wrong. When I’m dieting for a bodybuilding competition, I often get emotional, but that’s not the case. I checked and my blood sugar was 82. A great excuse to eat my favorite carb snack of an English muffin toasted with coconut oil and a lot of cinnamon on it. I went back to bed for almost 2 more hours of restless sleep. It didn’t make sense. I should have slept like a rock, like I usually do. I re-set my alarm and got up with just enough time to throw on some clothes and put my contacts in. Just before we left, Cameron told our friend “don’t die before you come back”. I didn’t think anything of it. He asked me about the comment halfway to the airport. Now, it made sense. I’ve always watched people at the airport. Even when I was a kid and we would take my dad to drop him off for a business trip, there were always tears. We would miss him. Many people seem to cry at the departure side, watching their loved ones leave, and there seems to be a lot more smiling and happiness being reunited near the arrival gates -and now with security issues, by baggage claim. He’s coming back in a few days, so it shouldn’t be a big deal. So…why did Cameron tell him not to die before he came back? For the last 6 years, with the exception of one trip, all of my airport departures have been to go to the hospital in Mexico. Leaving Seatac, represented not only leaving my family, friends, dogs and “all my stuff”, but going to another country to be treated for terminal cancer. I wasn’t worried about a plane crash, although I would prefer to jump out of the plane than to land in it…but that’s another story. It was a very real possibility that I could have complications from the treatments, or the cancer. Even though I haven’t been afraid of the cancer for many years, there are always negative thoughts that creep into my mind. Reading about some of the treatments I allow…many websites share the details of people dying from them. Nothing compared to the amount of people who die from chemo, radiation or complications from surgery or other pharmaceutical drugs, but the reality exists. The departure counters and security remind me not of an exciting trip, but the possibility of being herded into some sort of death chamber and not coming home. A little sick and twisted…maybe. Cancer has made me think differently. Time to change that thought and see the airport as a connection to possibilities and adventures. So much excitement awaits! For now, I’ll anticipate the arrival gate in a few days.

Depressed…

This morning a friend asked me “When you’re really down, how the hell do you get yourself back up?” It’s been a long time since I’ve been really, really down. But not long enough to not remember it. I’ve written about it before. The man of my dreams turned out to be a nightmare, I had creditors calling 20-30 times a day, my child had been taken away from me and I had terminal cancer. I didn’t see solutions to get past any of it. For about six months, I didn’t want to. I wanted the cancer to win. It was winning. I wanted to die and was getting worse daily. Based on statistics, I shouldn’t have been able to get better. When I pulled my head out, the real struggle began. There was so much to research. So much to do… Time to sleep for now…I’ll be back tomorrow.

R.I.P. – Instead, I hope you’re having fun!

Today marks 12 years that Dad has been gone. Funny how the more time goes by, the things you remember about someone changes.  I was once asked if I was close to my dad. At that time, I said “not really”. Seeing other people’s relationships, I realize now that I was very close to him. It depends on what you compare something to.  It’s all a matter of perspective. I miss him a lot! I’m thankful for the things he taught me, some things through his words, some through his actions. Some are things I incorporated into my adult life, some, not many, are things I didn’t ever want to experience again. Sometimes, even though he’s gone, the rebellious teenage Susan pops up and does something just to see if he’s still paying attention…wherever he is!

Some people believe “Everything happens for a reason”. Why did dad die at 61 years of age, from kidney cancer, a disease with no known “medical” cause? My cancer research started with his diagnosis. Kidneys are filtering organs. Was it the water he drank? Wait, he hardly ever drank straight water. He drank lots of coffee, but rarely just water. Was it the food he ate? Was it lack of exercise? Was it his high stress job? Was it us, his family? I don’t know. After he died, I stopped trying to figure it out.

If dad were still alive, he would have insisted I always have health insurance. I wouldn’t have started my research on cancer. When the cancer spread, if I had insurance, I would have done whatever the doctor recommended. Medical treatment for recurrent metastatic melanoma has a 99.6% failure rate. Very likely at that point, I would have given up.

There are many reasons and many perspectives for the same things. I miss my dad, but thankful at the same time. I love you dad! Maybe you like dogs now and are waiting with my fur kids at the Rainbow bridge.

Love, Gratitude and Blessings,

Susan

not the same spider