Susan WonderStone's Blog


No more pain Angie, no more pain.
April 11, 2014, 5:10 pm
Filed under: adult cancer patients, cancer

Yesterday was an interesting day.  I’ve got 2 tumors on my foot, one on the bottom where my heel meets my arch and the other about an inch away on the inside of my heel.   The herbal pain pills I like have caffeine from yerba mate, so even though they’re great at controlling the pain, there are only some times I use them.  I don’t take them when they might interfere with my sleep or before or after my coffee enemas.  The coffee helps with the pain, but sometimes not enough.  Thursday night, I barely slept because the pain was so intense.  I took the pain pills as soon as I felt like getting up.  It came close to completely eliminating the pain.  I got a lot done yesterday morning.  We met a friend in the afternoon.  Toward the end of our visit, the pain returned.  We ran another errand on the way home, but it was getting worse.   I didn’t say anything on the way home.  I just drove.  Sometimes, I’d rather keep the pain to myself.  Bert thought I was mad at him because it’s not like me to not talk :) As we got closer to home, not only was the pain intensifying, but I was nauseous.  As soon as we got home, I checked my ketone levels.  They were small, but at least they were there.  I hadn’t eaten much.  Most of the times when the pain is intense, I try to make most of my calories from apple cider vinegar and coconut oil  They keep my ketones up and in theory, the higher ketones, help to starve the cancer.  I checked my blood sugar, which was 81.  Both totally normal, but I couldn’t figure out why I felt like puking.

Water always seems to help.  I decided to get in the shower.   Something felt different, but I still didn’t know what it was.  As soon as I took the bandages off my foot, the pain doubled.  The water was excruciating.  I felt a presence start talking to me.  It was familiar, but not familiar enough.  She was telling me no matter how bad it got that I had to continue fighting.  She told me how she wished she had found me sooner, but by the time she did, it was too late.  She said my knowledge can help so many people if they just know about me.  I was crying,  I was really crying!  I didn’t say anything, I just stood in the hot water, listened and cried.  I know all these things and I have no intention on giving up anytime soon.  Somehow, I need to get my message to more people.

As the tears slowed down, I got out of the shower to get on facebook.  I had to see if I could figure out who she was.  It wasn’t the first person I checked.  I was concerned about her because aside from cancer, her best friend, (her dog) died a couple weeks ago.    I would have probably given up a long time ago if I had not been able to talk to my dogs about ALL my problems.  They always listen for a treat – usually a brussel sprout!

Next, I checked Angie.  She contacted me for the first time in December.  She said we had a mutual friend.  Our mutual friend died 2 years ago, also from cancer.  She said her doctors gave her 6 months.  She said she was willing to do anything to be here for her 12 year old daughter. We messaged back and forth for 2 days.  I responded to a few of her posts since then, but really thought she’d get better.  I hoped anyway! Her husband had changed his profile picture to their wedding picture 20 years ago.   Angie died on Wednesday.  I cried some more.

Hearing “you’re not going to make it through the summer”  in August 2004, gave me an “F You!!” attitude.  It seemed appropriate in 2006 when my doctor in Mexico said he was giving me the drug 5FU for my microdose chemo.  Most people can’t handle the expiration date.  It’s really hard to ignore it and LIVE anyway.  The people who’ve heard it seem to be the only ones who understand my desire to stay away from doctors.  My  invincible attitude isn’t always as strong as I make people think it is.

Never allow a doctor to give you an expiration date! Tell them it’s none of your business and you don’t want to hear it!  She  told me her doctor said she had 6 months to live last December. I’m sad for Angie’s family, especially her husband and her daughter.

I will continue to tell my stories and I appreciate all of you sharing them with your friends.  Someone out there needs hope.  Just enough hope to empower them to LIVE every day to the fullest.  The bigger we live, the fewer regrets we have on our last day, no matter how far away it may be.

Love, gratitude and blessings!

~Susan



Wonder Woman vs Homeless guy
March 29, 2014, 12:35 am
Filed under: cancer, coaching, Gratitude, Inspiration

If you’ve been following me, you know about my favorite outfit.  Don’t go away though, this is a new story…

Last Sunday, like most years, I wore my WonderWoman outfit to the Northwest Women’s show.  I wrote about it 3 days ago.

People smile and laugh and ask if they can take pictures with me.  A few people will look away, but everyone else makes eye contact, smiles, sometimes they laugh.  I have fun! People have always asked me why I do it.  How  do you think it would feel to have your doctors tell you your expiration date is just around the corner?  What do you think about?  Even if you know you  are going to fight with everything you’ve got, does a part of you still believe it?  When you see things you don’t have, do you think about how you used to want them, but will never have the chance now?  Do you think about how your loved ones will feel when you’re gone?

For me, those are the questions that circulated through my head – constantly.  Outwardly, I would have never admitted I was depressed, frustrated, defeated, lonely… the list goes on.  Inwardly, there were times I had NO idea how I was going to pull myself up or even if I could.  I realized years ago, that when I’m WonderWoman, I “see” myself the way everyone else sees me.

I think most people want to feel liked/loved.   If you’re like me, you do too.  How do you think it feels to have almost everyone you pass smile at you?  How do you think it feels to have happy people stop and ask you if they can take a picture with you?    How do you think it feels to be hugged by strangers, not just a hug, but a genuine, real hug?   When I’m wearing the outfit, cancer doesn’t exist.  Okay, I talk about it, but I’m not sick.  Eminent death is never going through my head.  Any pain I’m feeling is greatly diminished.  When people are smiling at me, it’s easier for me to smile.  It’s easier to make jokes and laugh.  It’s easy to be who I want to be.

My son, Cameron, and his girlfriend went with me.  They wore Wiener Friendly Soap shirts and gave business cards to people who asked about it.  She was going to a play that evening with friends, so she was going to stay in Seattle and ride home with them.  My son decided he was going to stay with her, hang out in Seattle while she was at the play and hitch a ride with them too.   Cameron is 17. He was 7 when he overheard my doctor yelling at me, telling me I wouldn’t make it thru the summer in August, 2004.  He has had to grow up faster than a “normal” kid, since for most of his life, he’s thought mommy wouldn’t be there for him.  It is what it is.

As the show was coming to an end, some of the vendors were giving away the food and drinks they were demoing so they didn’t have to take them.  The kids filled their backpacks, pockets and hands and left to find homeless, hungry people.  They went to Occidental park and handed out their score.  They later told me about all the personalities of the people they met.  A man they told to take as much as he wanted who responded “I don’t want to be greedy”.  A man who was making fun of the other people.  Some call it bullying, but the people he was making fun of were laughing too.  People with obvious mental illness and/or drug problems.  One man who was so drunk he could hardly stand…a Vietnam veteran who had so many stories to tell.  A huge variety of people.  Most of them had all of their belongings in a bag on the ground beside them.

I called him periodically, just being a mom.  The first time I called him, he had been talking to a man who said he was paranoid schizophrenic for 30 minutes.  The guy told him he had been living on the streets for over 20 years.  He was afraid if he was around the same person for any length of time he would hurt them.  He wandered off on his own, while I was telling Cameron it might be a good time to go another way.   Cameron wandered around downtown Seattle, watching people interact, but mostly, doing everything they could to avoid interaction.  He felt like he learned more in that hour than he had in the last 2 weeks at school. I didn’t tell him, but I prayed for his safety.  He’ll be old enough to go to war this year, it’s time to let him go discover life.

The next time I called, he was talking to another homeless guy.  This one had been homeless for 13 years.  His wife died and he emotionally lost it.  Most people do for a time period, but that time period is our own.  He and Cameron talked for several hours.  Parts of his conversation prompted this story.

“When I look in the mirror, I don’t see on the outside who I am on the inside”, he told Cameron.  He felt depressed, frustrated, defeated, lonely after his wife died.  Do you know how that feels?  He tried to pretend he didn’t feel those things, just like I did.  It overwhelmed him to the point that he lost everything.  Getting a job when you’re depressed, frustrated, defeated, lonely is not as easy as getting a job when you’re happy and show it.   Now, he holds a sign, hoping passersby will give him a little something.  While Cameron was talking to him, he had a few people give him money.  Just a few.  He had enough money to get a coffee.  He asked Cameron if he would watch his stuff while he got a cup of coffee to warm up.  Cameron decided he would “work the sign”.  Years ago, Cameron started making “FREE HUGS” signs and taking them to our annual festival.  He got to experience hugs from strangers and the same smiles I get in my WonderWoman outfit.  The homeless sign asking for money was different. Cameron said people looked away.  He had a plain sweatshirt covering the Wiener Friendly Soap shirt, so it wasn’t that.  He was cheerful, telling people to have a nice day.   They looked at the ground or any other direction to avoid eye contact.  They turned around and crossed the street.  They gave him dirty looks.  Nobody gave him money.  Nobody said anything in response to his kindness.  He told me how sad it made him feel.  When the guy came back, they had a long conversation about it.  Cameron connected with several people his peers will possibly never have the opportunity to connect with.  People who are looked down on by the majority.  People who had problems just like the rest of us, but their coping skills weren’t as good as ours.  People who were sick, lost everything and now live on the streets…still sick.

I don’t want to imagine what their lives are like, but I do.  I may not have the finances or the ability to transform their lives, but little by little, I can make a difference.  In 2008, I took in a homeless guy and his dog.  They lived with us for 6 and 8 months.  It took him 2 months to save the money for the plane ticket to ship his dog.  He now has his own business and is a productive member of society.  I’m not moving anyone into our house this time.  When we go to Costco a certain direction, we look for the homeless vet who stands on the corner.  If he’s there, we take him a hot dog and root beer on our way back.  He tries to be appreciative.  He’s so used to being ignored or treated poorly, it’s not easy.

What if we made eye contact with the homeless people asking for help?  A smile?  A kind word?  Loving thoughts?  A moment of our time to lend an ear?

How do you treat a homeless person?  Just something to think about.

Love, gratitude and blessings,

~Susan

 

 



I Will Survive
March 28, 2014, 5:40 pm
Filed under: cancer, Inspiration, recurrent metastatic melanoma

I heard this song on Sunday at a drag queen performance and started crying. I didn’t have a clue why. On Monday, while listening to it again…I figured it out. Having active cancer as long as I have, I’ve gotten used to it. For many years, I was more afraid to not have it than to live with it. I was afraid that without it, I would eat like everyone else does, I’d stop taking care of myself like I do. I realized last year that I can continue to live my healthy lifestyle, my learning and my teaching, without having the pain and anguish that comes with cancer. I’m hoping the last few months was my body releasing the majority of the rest of my greatest teacher.  I found a little more today and already treated it.  Like all before it, it will be gone soon.

What song?  I will Survive. Click on it to hear it on YouTube.  I’m proud of myself for figuring out the link thing :)

I’m changing the locks recurrent metastatic melanoma. You’re not welcome here anymore. Thank you for everything! I’ll be forever grateful!

Love, gratitude and blessings

~Susan



Another EPIC day!
March 25, 2014, 2:02 am
Filed under: cancer, Gratitude, Hope, Inspiration, Skydiving, Wiener Friendly Soap

Yesterday was no ordinary Sunday.  It was the last day of this year’s Northwest Women’s Show. There are tons of vendors and companies selling things women typically love.  My son and his girlfriend wanted to go with me.  We decided they’d wear the Wiener Friendly Soap t-shirts.  I gave them a stack of business cards for anyone who wanted one. They have RC Willie on them, so they’re cute! Image

I wore my Wonder Woman outfit.  I always wear it there at least one day each year.  There have been a few years I’ve been too sick to go and the next year, someone always tells me they looked for me and were concerned I hadn’t made it.  People laugh and smile and many ask to have their pictures with me.  I met some awesome women and re connected with old friends.  Okay, they’re not old, but I’ve known them a long time. Some of them only a year, but feels like much longer.  Our favorite booth last year, was also our favorite booth this year.  The LeFaux Performers.  I met Jaxen last year.  Jaxen showed me a part of life I’ve never known.  Thank you, my lovely!

 

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Someone from the Dr Pat show stopped me and asked if they could interview me for their website.  Dr Pat only had a few minutes and I was leaving before she would be back.  I agreed.  She asked me about living an epic life.  I don’t know anyone living more of an epic life.  It was short, but I told her I was going skydiving.  After I said it, I told everyone who stopped me for a picture that I needed to find my kid to tell him I was leaving to go skydiving.  I had no idea if the weather was jumpable.  I did not make up that word.  If the clouds are too low, I don’t jump.  If the wind is too strong, I don’t jump.  If the clouds are high enough, but raining/sleeting/snowing, I don’t jump.  That stuff hurts!  If the weather is cooperating, it’s jumpable!  I called Skydive Snohomish as soon as I left the parking lot.  They were running the 182 and the caravan.  Chances were high that I’d get to jump! I’ve heard if you make a decision to do something, the Universe conspires to make it happen.  I know, you don’t like the term “Universe”.  Sorry about that.  You still love me, so keep reading.

 

Yesterday was my last day to jump and stay current.  I’ve got my USPA A license in skydiving.  I have to make a jump every 60 days to remain current.  If not, I have to jump with a coach.  That means I pay for my jump, their jump and their fee.  I’m trying to be responsible in regards to money, so either I jump and stay current, or jump later and pay more.  It makes sense to stay current.  Yes, I know, I’m justifying it.

There’s so much more!  I got on the next load on the caravan.  There were three 3-way groups landing at the east field – getting out before me and a 3 way getting out after me and landing at the airport. At first I was scared that if the groups before me took too long getting out, I wouldn’t make it to the field.  Whatever, right?  Since I was the last one getting out for the east field, I decided to open high and play a little.  It was my first time flying that canopy and wanted to get to know it.

I’ve asked many skydivers if they get to a point when they’re no longer nervous before a jump.  They all have different answers and reasons for those answers.  At the Women’s show, I was amazed at how many women don’t think men masturbate.  Squirrel!  ADHD moment… Whenever we talk about Wiener Friendly Soap, people want to know why we call it that.  When I tell them the story about my kid (many years ago) in the shower screaming…Okay, I’ll tell you.  I was downstairs.  I knew my kid was in the shower.  It sounded like he was stomping on the shower floor and screaming.  As I started up the stairs, I could clearly hear him screaming.  He was at an age where regardless of the problem, barging through the door wouldn’t have scored me any points.  I knocked on the door and asked him if he was okay.  He didn’t hear me.  I banged on the door and yelled, asking him if he was okay.  He yelled back “I got soap in it!  I was jacking off and got soap in it!”  I barely opened the door and told him to pee.   It was the first time either of us remember me telling him to pee in the shower.  I don’t remember what happened after that.  I’m guessing most teenaged boys don’t tell their mom they’re masturbating.  It made me aware of a problem I didn’t know existed.  Most of the women at the show commented that they didn’t know men did THAT.  Anytime we told a man, there was sometimes laughter, but more often, an uncomfortable grin.  Okay, ADHD detour complete.  I think the skydivers who say they’re not nervous are like the men who tell their women they don’t masturbate.

I did my gear check, and had someone check my cypress (automatic activation device in case something happens and I don’t open my parachute).  I had someone else check everything again before getting in the plane.  Normally, I’m nervous and have to go potty several times before my jump.  I got on the plane.  I said a gratitude prayer, thankful everything was going to be perfect.  I talked, I laughed, I messed up my fist bumps and laughed some more.  The pilot yelled “DOOR”.  We all yelled “DOOR”!  Someone opened the door.  That’s normally when reality kicks in for me.  I still wasn’t nervous. I absolutely love watching people get out.  I often think “what the hell are they doing??”, before realizing my turn is coming up.  One of the first ones to get out was signalling something to me.  I had NO idea what he was trying to say.  I hoped it wasn’t important!  Out they went.  Next, 2 climbed out and held on to the outside of the plane.  Another jumper grabbed the chest straps of one that was already outside. All together, they went out – in, then out.  Gone.  It looks like a bug trying to stay on a moving car, then, in the blink of an eye, gone.  It takes a lot to watch them fall as the plane continues flying.  The next group didn’t set up, they just “flew” out together.  My turn.  I stuck my head out, but couldn’t see the field.  I knew that with 3 groups ahead of me, I couldn’t wait too long or I wouldn’t make it to the field.  I could see the “circle pond”, which is a field away from our field, so aimed for it and out.  It started on accident, but almost every jump now, I flip onto my back and watch the plane fly away.  It’s a freedom I may never be able to explain. October was my last 13,000 foot jump.  Instead of trying to do a lot, I made quarter turns and enjoyed the scenery.  It was a beautiful day!  There were clouds over the Cascades, but they were still mostly visible from Mt Baker to Mt Rainier. The Olympics were standing in their glory to the west.  It was amazing!  I’ve got a huge grin on my face as I type this!  Since I was the last one out, I had more freedom than if anyone was following my lead.  I waved off (when someone is falling above you, the wave off signals them that you’re about to deploy your parachute.  They need to make sure they’re not directly over you). I opened just under 5,000 feet.  Two of my end cells were folded under.  My first thought was “Oh shit, is this going to be my first cutaway?”  I unstowed my brakes and started pumping, hopefully to inflate the canopy.  It only took a couple seconds, but it worked.  I made my left turn, right turn and brakes.  I was still above 4,000 feet.  When I was a student, I was flying a 260 sq ft canopy.  This one was 190 sq ft.  Since it’s a lot smaller and I’m not, It makes for a faster ride.  I was northwest of the field, so positioned myself in the wind to get myself into a better position.  Looking down, the colorful canopies dotted the space between me and the ground.  It’s hard for me to tell how high they are, but always enjoy watching everyone move through the air.  Most of them were hanging out over the junk yard.  That may have been the best place, but even at 3,000 feet, I remember that view, moments before my crash in 2007.  I hung out over the baseball field.  They reminded me later of the chain link fences around the baseball fields, sometimes referred to as “skydiver skewers”.

As I came in for my final approach, I thought “who’s going to tell me to flare?”  (use my brakes).  I’m on my own.  My friend Nick was my ground instructor when i was a student.  He had come over on Saturday, so it took me back to last summer.  I wore a radio.  I couldn’t talk to him, but he talked to me.  He taught me a 2 way flare.  It’s a slower way to stop that is very helpful for me.  EVERY time I get close to the ground, I think about the crash.  Someone told me when she wants to use her brakes, she says “oh shit, oh shit”  then flares.  The ground seems to approach WAY faster than I want it to.  Flaring too soon will cause the parachute to stall and usually result in a very hard landing.  Flaring too late also results in a hard landing.

I flared about half a second too soon, but held it.  I probably could have landed standing up, but once again, thinking about my 07 crash, I chose my not so graceful plf (parachute landing fall).  I stood up and screamed “I AM F’ING AWESOME!!”  accentuating every syllable. It was my 33rd jump.  It was perfect!  I was less nervous than any other jump.  I was less scared than any other jump.  I threw my pilot chute, corrected a problem, got myself where I needed to be and landed successfully.  I’m sure the guys who heard me thought I was weird.  I don’t care.  2 weeks ago, I looked awful.  I felt awful. The tumor on the bottom of my foot was affecting my entire body.  3 days ago, it came out of my foot.

Right now…this is my epic life!  I will continue doing what I can to keep getting bigger.  More adventures!  More fun!

Thank you cancer for teaching me to LIVE!

 

What can you do to make your life more EPIC?  ?When will you do it?  Please comment and tell me about it!

 

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Love, gratitude and blessings

~Susan

 

 



Toastmasters Area 15 Inspirational Speech Contest
March 17, 2014, 12:08 am
Filed under: cancer, coaching, health, Inspiration, Skydiving, Wiener Friendly Soap

I competed in my first speech contest yesterday.  I had no idea what it would be like. I didn’t think speaking bothered me anymore, but I kept having to pee, so it must have.   It was the speech I titled “I’m still alive, what’s next?”   I had already done it for my Toastmasters club twice, once for our club contest and another for them to evaluate more so I could improve it for the Area 15 contest.  For those of you who don’t know, Toastmasters is a speaking club.  Everyone in the club takes turns speaking and evaluating, among other jobs. It’s a great way to not only improve your speaking skills, but get more comfortable speaking in front of a group.  Back to the speech.  It was supposed to be 5-7 minutes.  I’ve never gone under the time limit.  Us “Story’s” can talk forever!  (oh, yeah!  You probably don’t know my name is Susan Story.  True Story!  It’s on my birth certificate!)  Oops!  Did it again.  Now…back to the speech.  “There’s a fine line between courage and stupidity”.   I gave tidbits into the cancer history, but more importantly the fears I faced along the way.  Facing the fear of skydiving by myself and breaking my back.  Well…not my whole back, but L1 was obliterated.  Really!  It was a burst fracture with retropulsed fragments.  I didn’t know what that meant either.  The vertebrae kind of exploded and some of the pieces got stuck in my spinal canal.  I guess that’s why they said I might not ever walk again.  Whatever!  They don’t know me! As you might have guessed, the speech continued with my skydiving adventures up to my last jump as a licensed skydiver!

I’m still alive!  What’s next?!

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Yay!!  I won!   The district contest is next month, then the Division contest in May.  I’m not sure “What’s Next”, but the World Championship Contest is in Malaysia in August.  Wow!  What an adventure!  I can’t wait!  For now, I’m headed to the shower with my Wiener Friendly Soap!  Check out my website.  If you like RC Willie, order some soap.  You’ll love it!

Love, gratitude and blessings

~Susan



International Speech Contest – Round 2
March 14, 2014, 4:42 pm
Filed under: Uncategorized

I won my Toastmasters club inspirational speech contest!  I’ll be competing in the area contest tomorrow, Saturday, March 15, 2014 at the Carl Gipson Senior Center of Everett at 3025 Lombard, Everett, WA 98201.  Contest starts at 9am.  The speeches are only 5-7 minutes.  My speech title is “I’m still alive…Now what?!  Even if you know my story, I’d love to have a packed house!  Come and bring a friend!  Who knows?!  There might be a story that inspires you to be a better you! 

If you come and we haven’t met yet, please introduce yourself. I’m on a quest to meet as many of my online friends as I possibly can! 

Love, gratitude and blessings! 

~Susan



Red Sauerkraut and Fermented Roots
March 1, 2014, 6:37 pm
Filed under: anti-inflammatory, health, nutrition, Wiener Friendly Soap

Sorry I slowed down on the videos, but I wasn’t happy with how the cancer was making me look.  I’m back!  Being alive and sharing what I’ve learned is SO much more important!

I’ve been making a lot of fermented foods.  One of my doctors says “All disease begins in the gut.”  I believe if our digestion is working the way it should, all functions of our bodies will work better.  Fermented foods are hard to get used to for people who regularly eat the Standard American Diet (SAD, not to be confused with depression from the weather), but well worth it!  I’ve experimented with lots of veggies, but sauerkraut is one of my favorites.

Red Sauerkraut

1 head red cabbage

2 beets

bulb of peeled garlic

1/4 cup each of fresh turmeric, galangal and ginger roots.

3 t sea salt.

Chop all ingredients.  Put everything in a bowl, including the salt.  Squish it until liquid starts dripping from the mixture.  Put it in a crock or glass jar.  Use something to hold the mixture down in the liquid.  Anything above the liquid has a higher likelihood of getting moldy.  I’ve been told to just skim the white scum that forms off the top.  One batch I threw out, but ever since, I skim it off.  I’ve never gotten sick. Do not use an airtight lid.  It needs to breathe. Cheesecloth and a rubber band work great!  After 3 days, mild sauerkraut is ready to eat.  I like to ferment mine at least 2 weeks.  It’s crunchy and very sour. Commercial sauerkraut uses vinegar to make it.  Buying it in a jar never has as much crunch and doesn’t give you the pro-biotic benefits of the fermentation process. When it’s fermented to your liking, refrigerate.  I’ve been told it lasts for months, but it rarely makes it a week for us.

Fermented Roots

Turmeric, ginger and galangal roots are all known to be anti-inflammatory foods.  Some say that very little turmeric is bio-available unless it’s fermented.  I don’t know, but thought I’d try something new.  Ginger beer is fermented in a sugar solution, like water kefir and kombucha.  I decided to make a mixture of this powerhouse of roots.  I used about 3/4 cup of chopped turmeric, galangal and ginger roots, 3/4 cup sugar, a gallon of purified water and about 16 oz of water kefir – to get it growing faster.  If you don’t have water kefir, it will still work.  It’s all about fermenting until it’s to your taste.  I’ll ferment it for 2-3 weeks, tasting it along the way.  Since I’m on a ketogenic diet, I want as much of the sugar to be converted as possible.

Red Sauerkraut and Fermented Roots

Try them and enjoy!

Love, gratitude and blessings!




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