A Cancer Education

         When you enter the world of cancer you learn new vocabulary.  you learn words that end in      "-ine," like cisplatine and visplastin. You learn the difference between immunotherapy and chemotherapy.  You learn about radiation treatments and the difference between an MRI and a CAT scan and a PET scan.  You have nurses dress in hazmat gear to measure your urine. You learn about what your insurance plan will cover and what it will not.  AND what it will not are the extras.


Most of all, you learn that cancer does not care what time of year it is. Cancer does not care it is Thanksgiving and Christmas time. Cancer does not care it is your birthday or your child's birthday. Cancer does not care if you are pregnant.

Melanoma hit me full force in November of 2010. I am NED stage IV. Cancer did not care it was Christmas time, because by Christmas of 2010 I was legitimately dying of cancer. I had a doctor tell me to go home, there was nothing he could do, I had another say he'd try to save my life.

Cancer doesn't care about anything other than surviving and thriving in your body. Melanoma is often called the black beast because of its color after being removed. This beast is resistant to many treatments and the treatment I went through was NO GUARANTEE, yet I am HERE!
As I approach my cancerveyrsary I think of those who fight on through the holidays.  i think of the oncology wards of children and adults receiving cancer. I think of the infusion centers here people are hooked up to poison, hoping it will kill the  cancer. I pray for you all and paint my angels for you.

GET READY to RUMBLE!

2016 is right around the corner and it has been 4 years since my stage IV melanoma diagnosis. Thanksgiving of 2010 was the SCArieST ever thinking that it was my last holiday season with my family.

YET, that was not my fate. I found a doctor (Dr. Hamid) at the right place (the Angeles Clinic) and he saved my life with the experimental treatment that does not always work, biochemotherapy, and I lived.

Since then, I have found a new passion in my life, trying to spread cancer awareness. In 2016 I am putting my $$ where my mouth is and heading to Washington D.C. in March to advocate for the MRF. I am a simply mountain gal and heading to our capital scares me, but I am going in honor of those who have passed from the beast.

In June I am organizing a walk for AIM in Southern California.   I am nervous but know I will be blessed with a great committee of volunteers to help raise loads of $$ for melanoma awareness and research monies to find a CURE.

I believe I survived to make a difference and in 2016 I am going to do my part. I am one small person who survived as there are MANY of us out here!  I vow to speak up for those who cannot.

#melanomasucks
#morethanjustskincancer
#blessedtobealive

to borrow a hashtag from a fellow melahomie
#dontstopbelieving

YOU SHALL NOT PASS!!

 

As I sat in my hot tub this morning, hoping to see some "fire ball" meteors, of which I did not, I pondered how this is the anniversary of my diagnosis of stage IV melanoma.

If you haven't heard my story before:  Fall of 2010 I had a lump under my left armpit. By thanksgiving, it was about the size of a tennis ball. The doctors had these statements, " give her a shot for pneumonia, she's going to have chemo" & " why did you come here? I could've done this over the phone." "There's nothing I can do."

The shock and horror my family felt is indescribable. We cried and cursed ( well I cursed) and PRAYED for an answer. We reaching out to everyone we knew for help.  I friend of mine who knew someone who knew an important someone, Debra Black, was able to get me an appointment on December 24th, 2010 at the John Wayne Cancer Center.  After a LONG day of tests and scheduling surgery to remove the tumor that was now the size of a grapefruit and causing me unexplainable amount of pain, we received a phone call at around 8:00 that night. The tests said the cancer had spread to my lungs and surgery was out of the question. I was being referred to a medical oncologist named Dr. Omid Hamid at the Angeles Clinic. 

My husband and daughter left after Christmas. I stayed with my parents for the appointment to the Angeles Clinic.  The tumor grew.... and grew... and my hope for surviving went lower and lower....I was heart broken.

The first week of January I saw Dr. Hamid. He said, " I will try to save your life, and if the shit hits the fan, I will tell you. It hasn't hit the fan yet."  I was admitted to St. John's 3 days later for my first of 5 rounds of biochemotherapy and received around 2 years worth of chemotherapy and immunotherapy drugs in 5 cycles. I was bald, I was sick, and I hardly ate a thing. BUT the cancer shrunk and by the last cycle the scans showed no active cancer.  In April Dr. Morton performed a 3 1/2 hour surgery to remove the dead tumor. THE MONSTER under my arm was gone!  AND I still had an arm!  

I share to let you all know I have been there... I have suffered... and I SHARE HOPE that one day you can be back on your feet!  For those who have lost loved ones....during may darkest days of chemo there were times I did not want any more drugs. I did not want to suffer anymore. If the cancer had not responded, I would have called in hospice. I completely and totally understand those life and death decisions faced by cancer patients and their families.  My heart breaks whenever I read that patients are not responding to treatment. WHY ME and Not THEM?

For NOW, CANCER SHALL NOT PASS into me!  you asshole, you tried to take me from my family and I am coming at you in 2016! Now that I feel more human than ever ( as the treatments took about 4 years to feel really over. 

I head to Washington D.C. in March with MRF to advocate for government support of melanoma awareness!

In June 2016, I am planning a fundraising AIM walk/run to bring even more attention to the dangers of melanoma!  

I do not know where else I may end up...but MELANOMA!  YOUR DAYS are NUMBERED!!

diagnosed & parenthood

The other night my lovely 18 year old daughter came to see me before I fell asleep. She has been dealing with the new world of being a grown up and wanted to discuss some things. She looked at me and said, "what if you are not here?"

I paused....

"What do you mean? I am here!"

Then it hit me like a ton of bricks.

"Do you mean the cancer?" OF COURSE she meant the F-ing cancer!!

What if she needs me and I am not here to help.

Cancer is a horrible thing to face and even more horrible to tell the ones you love you are sick. I cried my eyes out for my daughter especially when I received the diagnosis


I did not want to leave my daughter but I had to and I lived down in southern cal for treatments and I did not know if I would ever return home.

My new melahomie Lisa Butler is fighting stage 4 melanoma with 3 small children at home.
My other new melahomie Aine is stage 4 and HER mother is as well!!

Telling my daughter I had cancer was the worst thing I have ever had to do. It is also why I fought so hard.

To all those mother's out there, keep fighting!

To Lisa, I am so proud every time I see you post your smiling face and I now this has not been easy for you.

To my daughter, I AM SO PROUD of you!!

Can't you cut it out?

Can't you cut it out? This is a question that people with melanoma hear a lot. It's just skin cancer, right?

SERIOUSLY!!!

I am sick and tired of hearing this. I know many people who have been diagnosed with stage IV melanoma and have not had  primary melanoma on their skin. I know people who were misdiagnosed with something else, because melanoma was the last thing on the minds of their doctor. I know someone who had it come back, INTERNALLY, after 10 years passed of it just being "cut out." (that is me by the way).  

SO, for the record, melanoma is the deadliest form of skin cancer, it is cancer, and people diagnosed with it will spend their entire life wondering if it is coming back. 

Too many people are losing their life to this ugly disease. Last night we lost a beautiful young man to the disease. I cannot imagine the sadness is family is going through. It is time for this disease to be hit with all we got!  It is time for all cancer research to join forces and fight for all cancers!  It's not all about the pink ribbon, it is about all cancers!

I am saddened and pissed off and out of words for the  losses due to cancer. ENOUGH IS ENOUGH. 

This country needs to get off its ass, and stop distracting us with bullshit political games and put our resources and energy towards GOOD, CURING CANCER needs to be TOP of the list.

Seeing Spots

I see spots.... EVERYWHERE!  I am probably looking at your spots if we in person.  

While spending time at a natural hot spring this past weekend, I saw lots of spots. There was a a mother and daughter with BAD spots. Not just a little freckly... but dark, msishapen spots, all over.  Judging by their accents, they were foreigners and did not speak lots of English. It was HELLISH to not start a big lecture, OF COURSE they had their spots looked at!  I was on a mini vacation and was trying to NOT think about melanoma.

But therein is the problem. I think about melanoma every day. It follows me, a fear I pray you never have to live with.

SO, please look at your spots because you never know the trouble that may be brewing in them. 

christmas tree

Yesterday I went to a memorial service for a friend who passed away after his cancer treatment from an infection in his blood. He died while recovering from cancer.

He called his iv tower the tree of life. I used to call mine the christmas tree. I suppose they are the same thing... a Christmas Tree is to celebrate the life of Christ & the tree of life for Paul was life giving as he was a man of DEEP faith in God, the Holy Spirit and Jesus.


This made me think of what cancer treatment does do your body and spirit. Those of us fighting, as well as our families, often have our faith renewed, created, and or tested. It is SO HARD to think that GOD would want anyone to go through the PAIN of cancer treatment. I have spent a lot of time pondering this.... as I experience GREAT physical pain during cancer treatment and my family experienced GREAT mental anguish worrying about me dying.

WHAT AM I getting at???

The simply point of this blog is to ask for PATIENCE for those of us who have been diagnosed with cancer. The anxieties do not just go away after treatment ends.... I myself am 4 years 2 months out of treatment and was crying like a baby after reading my the medical leave benefits for my job!  I wasn't planning on crying, trust me!

My christmas tree was an iv tower hooked into my double port...now my "iv tower" or christmas tree is a SOLID belief that there is a power greater than myself, I call God, and I have guardian angels looking out for me all the time.

What is your "Christmas Tree"??

How melanoma changed my life...

Back to Life, (this song motivated the title of my blog)

Yesterday was a day that I was reminded of how my outside activities have been affected by melanoma.  My family and I visited Travertine Hot Springs, outside of Bridgeport, CA. In my 20s, I was the first one to take off my clothes and jump in any hot water!  I did not think twice about the sun. 

Who can resist this? I sure couldn't!  I grew up visiting these types of natural wonders.... yet.... yesterday it was in the middle of the day, and the sun was way HIGH UP in the sky. My poor white body did not need this exposure at all. I did not get in the hot springs. 

DAMN YOU melanoma!!

I know I am not the only one to be affected by melanoma. The people out there diagnoses with stage 1 are now covering up all the time!  They feel fear of the sun that was never there before.  Families are mourning the loss of loved ones, a number too big for me to think about now. My eyes are filled with tears thinking of all the people who have lost their lives to "just skin cancer!"  

For today, I will approach my life with much respect for the sun's rays and use this knowledge to warn others about the dangers of too much exposure.

I have been blessed with a 2nd chance to get Back to Life and I will continue to spread a message of HOPE and AWARENESS for melanoma and fighting cancer. 

A letter To the Newly Diagnosed and those is the Trenches of the Fight

Dear Newly Diagnosed with Cancer & those who are actively FIGHTING,

First, I am SORRY you are going through this. I too have been there!  It is THE hardest and SCARIEST thing you a person can face. I know you are scared and your family is scared.  BUT, I want to share a message of HOPE.

The year of 2011 began for me with a diagnosis that only gave me 5-8% chance to live 5 years. I had anywhere from 2-6 months to live. It was stage IV metastatic melanoma. A tumor the size of a grapefruit was under my left armpit. The pain was unbearable. The fear was unimaginable. I had NO IDEA how I would survive. Without going into the gory details, I did survive and I am here now.

What I want to do for all those in the middle of cancer treatment, is extend a HUGE HUG!  That is right, I am a hugger!  I want to hug all of you and tell you to take it easy and rest. Let the medicine do it's job and know that so many of us have been right where you are. I am one of the people who was told to go home and get their affairs in order. "There is nothing I can do for you," were the words from one doctor to me and husband and mother. My poor husband almost fainted.

With a lot of faith, I was led to the Angeles Clinic in Santa Monica, CA. This is where I met the charming Dr. Hamid. He said I will try to save your life and if the shit hits the fan, I will tell, and it has not hit the fan yet. He sent me in to the hospital for bio-chemotherapy.

I said I would not share gory details... so I won't.  But, I want to tell you I KNOW about the pain of treatment. I know about hair loss....I know about not eating for 14 days....I KNOW about being close to death. I know about wanting death to end the pain of the treatment and the pain of watching your family watch you in the middle of the pain of cancer treatment.

These days of fighting cancer are the the HARDEST times you will face.

I am so proud of YOU for your fight and the dignity you have during this time.

THERE is an ARMY of PEOPLE praying for you, RIGHT NOW!

& MOST OF ALL, I WANT TO SAY TO YOU:  STAY STRONG!!

MUCH LOVE to YOU

Sincerely,

Steph

SIGNS

While jogging with my dog, I saw 6 very big, and very ominous turkey vultures, sitting on both sides of a gate I had to pass through to continue on my 3.58 route. What were they doing there?  These black birds that eat the remains of dead things..... WHAT WERE THEY DOING in the MIDDLE of my path??

I suppose I have always believed in signs. And not stop signs my friends, signs of things to come.  My last visit to the cancer center I heard my doctor utter the word "cured" and "you can come once a year" .... "if you feel okay with that?"

OF course I am HAPPY!  OF course those are words I want to hear....BUT.... there is always a BUT when thinking of melanoma. BUT, what if it comes back... what if it comes back and I don't know because so often there are no symptoms of the disease being there..... WHAT IF THESE 6 vultures are a SIGN?  A BAD SIGN?

There could have always been something dead nearby, that these creatures were feasting on.... and as  they flew away I realized that I have been given a second chance, for some reason, and I am here, chasing off the black vultures of doubt that live in my mind and in the minds of all people who have lived with the black beast of melanoma.

Stages of Scanxiety

FIRST: for those who are new to the cancer world, what is scanxiety?  These are the feelings we get when facing scans, blood tests, and anything else cancer related.

SECOND: These are only my feelings and perhaps they are shared and perhaps they are not....


Alright, let's get into this, shall we?

Scanxiety has a different levels and different duration times for each of us. The first 2 years out of cancer treatment I had scanxiety up to a month before my tests.  It was amazing what would remind me of being in treatment. A song.... a smell.... a sound? ( those damn beeping sounds of an IV tower!!!). It could be just about anything to bring a rush of tears to my eyes and bring fear to my heart.

The next thing to flood my mind is how will I tell my family I am sick again. How will I look at them and know we are facing treatment again?? What treatment will I get this time?  How will I tell my employer and how the hell will we stay financially afloat because my paycheck is the primary $$ for our family?  basically.... WHAT THE HELL AM I GOING TO DO??

Now that I am at 4 years NED, my scanxiety has taken on a new, logical approach... the biggest concern is how to tell my family and how the hell we will make a living and pay for my treatment. My first round of fighting cancer drained all my sick leave and teachers only have a limited amount of time. Once that is gone... we will be unemployed and have NO INSURANCE.

I know , I know , I KNOW BABY!!  IT IS RIDICULOUS!!  

but this is not a blog about health insurance and the failure of our country to offer fair and decent health care to all its citizens.... that is entirely another topic.

Back to SCANXIETY.  We worry about $$, we worry about treatments and can we do it AGAIN,and we worry about telling our families and have imaginary conversations with everyone we know telling them we are sick again.... GEEZ, it all exhausts me.

(CAN YOU tell I am heading in for blood tests and x-rays??)

ONE more thing!  After the results come back clear, we wonder if our doctors read the scans correctly?  Did they miss something?  Am I really dying?  It is a roller coaster of emotions and a total MIND F*#K!!! 

So, as of now I am NED.... and until I get clear results... I will worry a bit.  I will pray for those who are fighting and those who are on hospice care...and try not to let scanxiety get the most of me. 

THANKS for reading.

FIGHTING Shadows of the BEAST

As I head into the 5th year of being NED I still ponder how being handed a death sentence affected my family and my life.  How it almost took me from my daughter, husband, sisters, mother, and friends. We were all affected in an indescribable way.

In the melanoma community, this cancer is often called the beast. It is a black beast that seeps into the corners of our bodies, eating away at us while we sleep and eat and often not showing itself until it is too late.  Many people do not even find a primary location for this ugly monster becomes everyone's worst nightmare.

SCANXIETY comes every 6 months when I check out of the regular world and drive to the cancer center to get results from x-rays & blood work. During that time I am again a patient... sitting in a small doctor's office, praying that I do not see the look on my doctor's face that indicates the beast has returned. During that time, I plan how I will proceed if it is indeed back.... how will I tell my family?

I am SO VERY BLESSED that this has not happened, and with every visit I am told there was nothing exciting about any of my tests!  I get to live another day!

That is when I think of those who do not get the same news and I tears and joy and sadness slide down my cheeks.

EVERY day that I survive I wonder if a new pain is the beast, returned to finished what it started. EVERY day I choose LOVE & A POSITIVE ATTITUDE in order to continue to be NED.
EVERY day I am alive is a FIGHT against MELANOMA.

I will continue to spread the message that skin cancer is SO MUCH more than "just skin cancer" and I will cringe every time someone says that to me, because it is a horrible-horrible cancer, just like any other cancers....... and I will spread HOPE as much as I can.

I am just one person, who has a passion to spread HOPE and AWARENESS as much as I can.

STAND TOGETHER

Today was the AIM Walk / RUN to raise $$ for melanoma research and awareness. I met 2 brave women who are in the trenches of fighting melanoma!  I know what it feels like to be in their shoes and I realize the benefit of standing together and supporting one another in the fight against cancer!  

I am happy to be HERE and BE ALIVE to lend what support I can, by standing with other FIGHTERS.  

WE WILL FIGHT ON & STAND TOGETHER!
#WatchOutMelanoma2015

SHOUT OUT for ALL CANCER WARRIORS!!

Today I ran..... every step I took I dedicated to someone fighting cancer and / or someone who passed.

I run for Jillian.... she passed away in December of 2012..... I run for Tina who fought while I did...with a different outcome ..... I run for Steve Martin who endured biochemo and made it to NED, & Suzanne, Mark, and Rich!!  I run for my facebook friend Jennifer, who has been fighting and living with brain mets down under!  

You cannot see all our scars...but we have them.

I run for ALL fighters out there!!

Melanoma is more than JUST SKIN CANCER & IT KILLS!!

JUST A REMINDER for everyone who thinks you can just cut it out!

gone too soon....

you are missed everyday

Every month is Melanoma Awareness Month for me.....

As with so many other melanoma survivors, melanoma awareness month is every month for me. I am always trying to think of ways to spread awareness and am always caught off guard when people seem surprised that I almost died from skin cancer.

I am not shy about my experiences with melanoma and tell anyone and everyone. Recently, a coworker mentioned a friend telling her that his parent had skin cancer and it turned into another cancer in his liver and he was getting checked to see if it had gone to his brain.  Sounds like melanoma to me!!!

How do we get the word out that melanoma is WAY more than "JUST SKIN CANCER!!"  ???

HOW DO WE GET PEOPLE TO UNDERSTAND A SUNBURN CAN BE SO DANGEROUS??

I am not quite sure..... most people do not want to talk about cancer.

I know it is hard to talk about cancer.  I do not want to talk about it, but my life depends upon being knowledgeable about cancer. My life will always take me to a cancer center for scan results, which I PRAY will always show I am NED.

I am not sure how to tell people and convince them that melanoma is so much more than just something you can cut out. IT IS DEADLY.

I HATE you CANCER

Dear Melanoma,

I really HATE you.I do not hate a lot of things, but you I HATE. WHAT I hate especially about you is how you made my family think they would lose me. I hate how sad everyone was when they saw me, sick and skinny and bald.  BUT, guess what?  I AM WINNING!  Next month I will see my daughter graduate high school!  This photo is when she'd come see me when I was in treatment, and it ROCKED her world thinking I was going to be gone.

I am 4 years NED and I PRAY everyday you never enter my life again. Every step I take, EVERY veggie I eat, EVERY negative thought I banish from my brain is done to KEEP you away.  LEAVE us alone!

I would end this sincerely or love, but I'd rather say F U!!!

Strong Steph staying strong, signing out!

Christmas Wish

I know it is March 22nd, but recently my husband and I found a Christmas letter from our daughter from 2010.

She asked for a cell phone because her Mom has cancer and has to go away.

It breaks my heart to think about what cancer did to my family. BUT, that is now in the past and the whole cancer experience seems like a bad dream.

As I ponder the WHY of getting sick.... I know the answers to this are not for my brain. I am blessed to be here and my goal now is to continue to give out HOPE and POSITIVE energy to those who are fighting a late stage cancer diagnosis.

I will continue to spread awareness as Melanoma is one of the fastest growing cancers. 

I titled this blog "back to life...." to chronicle life after surviving melanoma....& I wasn't sure how long I would be writing as statistics gave me 8-10% chance of surviving 5 years about diagnosis.

For those who passed on....  it is easier to die than live is something I have told my husband. If I had died, I was the lucky one to end my suffering.... and there have been days I thought, "I am alive for THIS?" 

At the end of my treatment my beloved little mountain school was closed and my family had to move so I could keep a job ( because we wanted insurance I was pretty sure my boss was trying to get rid of me) and as a result of the move our daughter suffered severe depression and we lost our dream cabin. I stayed alive for this??  

I beat the beast and I am here to send angels into the world and love and HOPE.

Random Thoughts

As you get farther away from cancer treatment, life begins to take on a "regular" pace. And that is just fine with me.... BUT, thoughts of cancer are always present.

BIG THINGS I have learned:
1) there are no big things!
2) life is precious!
3) if I don't have enough $ for all my bills, it's ok to have a pile of bills I can't pay
4) did I say Life is PRECIOUS? well , it is......

I know some people are still fighting and I will continue to pray for them.

I HOPE my story of hope can help someone out there.

sidenote: I had a good friend die after fighting breast cancer for years, back a few years ago. She had wanted to see her daughter graduate. She did not get to.... My BEAUTIFUL daughter will graduate in May and I AM ALIVE TO SEE IT!!  I LOVE YOU ALLISON!!

SHOUT OUT to CAREGIVERS

Lately I have been thinking a lot about caregivers.  Over the winter holiday, I visited my Mom in her small retirement style apartment. I saw her comfy recliner which I set in while I stayed with her during my cancer treatments.


It was HORRIBLY HARD for those around me to watch as I lost weight and got weaker and weaker. I can never truly say THANK YOU enough to everyone who took care of me.


Caregivers for cancer patients have such a difficult road to travel as their loved ones fight.  They face the bills coming in every week.... they ponder how life would be alone, without their spouse/parent/sister/brother/child. It is a REAL concern for those with family members in cancer treatment.

I always felt bad for putting my family through the cancer and hated watching the sadness in their faces.

We have all moved on, and now live as if I will live....as I am ALIVE.  But, it doesn't escape us that a recurrence is a real possibility.

FOR ALL CAREGIVERS, BLESS YOU!!  Thank you for sacrificing so much so we can get through the treatments and remember to take time for you!  Go to lunch, see a movie, and remember to get help to care for us...... it is a hard thing to do alone.

LOVE to the members of Team Stephanie who helped me SURVIVE:  Linda Yates, Kathryn Yates, Amy Yates, Chris Bowen, and my daughter Allison.

It takes  TEAM  to deal with a cancer diagnosis.