Beating the Unbeatable

7 years ago I was declared NED. No Evidence of Disease. 7 Years and 9 months ago I was told to go home, "there is nothing I can do, I could have told you this over the phone."

I DON'T THINK SO!

There are some things I know for sure about my experience. There are parts of surviving the unbeatable that stay with you.

Survivor's Guilt:  I had a doctor who told me, "Screw Survivor's Guilt!"  So, I have tried, and for the most part I do not allow myself to have survivor's guilt. Yet, the longer I have cancer free and the more people that die from the same diagnosis I had, survivor's guilt does creep up. It does not seem fair that others perish from melanoma, and I am still here. I truly do not know why I made and others did not, but I did. And I do not want to waste my time here! My philosophy is to give back when I can and spread my story to spread HOPE to others.

Scanxiety:  This is a real fear. For about 3-4 years after being declared NED, I used xantax to deal with the anxiety. I often would begin to panic a couple weeks before a cancer check up. Slowly, I have learned that going to cancer centers for checkups will always be a part of my life and better to face scans with dignity and courage. Just like I faced the original diagnosis and treatment. My goal was to always smile, and treat my nurses and caregivers with kindness. If I were to die I did not want to be remembered as the grouchy patient. Just saying...I know this sounds strange, but sometimes I thought that being the patient was easier than being the caregiver.

Life Lessons: I suppose I could become all philosophical and say that cancer was a "good thing" and I am overall "happy" for what I learned while sick. Sorry, I am not HAPPY I got cancer and I AM NOT HAPPY FOR the HELL it put my family through. BUT, I did learn who my real friends were and learned how many people drop you like a hot potato becuase they are "uncomfortable" you are sick and dying. I had practically an entire community turn on me and my family as I fought for my life.
I learned that YOUR FAMILY IS MOST IMPORTANT. My daughter, husband, mom, sisters.... these people gave me the will to endure 5 rounds of biochemotherapy. (This is 3 chemo drugs and 2 immunotherapy drugs administered all at once and the treatment almost kills you.)
7 years later, I know I live for the day and do not allow good times to pass me up!
LIVE WITH NO REGRETS! You can't get tomorrow back. You do not want to ever find yourself in a bed, fighting for your life and thinking about how you did not take that trip or drink that bottle of wine or give someone something of yourself. You have to give it away in order to get it back!


A SPECIAL MESSAGE: To all my friends who are my melahomies. I LOVE YOU and I KNOW WHAT YOU ARE FACING. I still have survivor's guilt thinking I have been here for 7 years, cancer free and some of you are still fighting. I know you are so strong and you and your families are amazing. I send you LOVE and HUGS and I KNOW you are scared. Please know there are others out here who have beaten the beast that is melanoma. Please message me if you need a vacation to Yosemite and some Nature RX. I want to help!

7 years NED

With the official first day of summer right around the corner, I am seriously amazed and blessed to be here to see it begin. When I was a kid, summer meant endless hours in the sand. So many hours actually, that my twin sister and I had the nicknames "sand fleas." We knew every rock, every rip tide, and all the best places to set up our "beauty salons" in the tide pools.  It was our domain.
  Our hair would become a light strawberry blonde. The sand would be everywhere! Our skin would burn, peel, burn, peel.... all summer. As long as we had a fresh piece of aloe vera to cool our crispy skin, it was okay. Freckles were kisses from the sun.  This was the norm.  We did not, COULD NOT, imagine how we were damaging our skin and the consequences we would pay.

As my teens ended, and I had many-many hours of sun exposure under my belt, my early twenties meant more sun.  I found it entertaining to sunbathe along the Merced River, often "au natural", and again, summers were about the first sunburn and being prepared with aloevera. I did not truly try to prevent sunburns, I simply figured they were a part of my pale skinned life.

In 1992 my Mom called me. She was diagnosed with a melanoma inside her right leg, on her thigh. All I knew was that melanoma kills. I cried thinking she was going to die.  She was lucky and UC Irvine had just opened a skin cancer clinic. A large biopsy and she was cleared. No lymph node biopsy, and simply some chest x-rays to follow up. WE HAD DODGED A BULLET. We all went into "SHADE MODE" and soon forgot this scare.

Fall, 2000:  I was graduating Fresno State, had a  2 year old, and was just beginning my career as a teacher.  And I had a small dark brown spot on the inside of left forearm.  SHIT

It was itchy and required I went to the university health center and had it removed. It was melanoma. This led to a sentinel node biopsy. Wonder of wonders, it had not spread to any lymph nodes, and after a wide excision, I was free to go. Annual chest x-rays and blood work was the protocol for prevention.  10 years passed and I figured I was FREE.

WRONG

Fall of 2010 (10 years after the first melanoma), I had a lump under my left armpit. This lump grew and grew and by the time I was diagnosed, I was stage 4 with months to live.

That was 7 1/2 years ago. I had been given 5-8% chance to live 5 years. Those are some frightening statistics. Yet, for some reason I am still here!  Melanoma Awareness month has come and gone, yet every month is Melanoma Awareness month for me. I beat the odds and am here to warn everyone that "just skin cancer" is SO MUCH MORE. It kills.  Everyday there is someone, somewhere fighting this horrible disease. It is breaking hearts. It is spreading to people's brains, lungs, and other organs. It is so much more than "just skin cancer."

home at last...

I am grateful to be here and will continue to spread the word.

Please see AIM at Melanoma for more info on treatments for melanoma! 
https://www.aimatmelanoma.org/

BC / AC

When you survive cancer, you begin to set memories in your life as BC and AC. Before Cancer and After Cancer.

When I began this blog, I honestly did not know how long I would be AC. With a diagnosis as severe as mine, stage IV melanoma and with no solid treatments that were guaranteed to work, I was not guaranteed to continue living NED. But, here I am! 

Yesterday I went on a hike that I had not done in over 25 years!  ( I kept saying 20 years, but my husband said, "Steph, you know it was more than 20 years ago actually.")  yes-yes, I KNOW!  The point being, I was able to do something AC, that I had done in my early 20s. ! 


As you get past milestone survival years, whether it is 5 years or 10 years, you always remind the BC time in your life.

BC was when 1) you did not worry about cancer; 2) you did not know cancer terms like scanxiety; 3) you blissfully went through your days without thinking about sun protection or the fact that the sun damage you have  acquired may kill you.

AC is when you 1) count the months of NED; 2) get scanxiety from either 1 month, to 6 months before you will enter into a CT/PET Scan machine 3) understand that your port needs a 1 1/2 inch needle to be accessed for monthly flushing; 4) cover up EVERY INCH of your body from the sun and live like a vampire; 5) at first you feel scared to NOT SEE YOUR doctor every week; 6) have people look at you with the attitude "Why don't you get over it?"; 7) SURVIVOR'S GUILT ( why did I survive and so many are dying?; 8) HOLY SHIT!  I didn't get scanxiety until a week before scans??; 9) Dealing with more "Isn't melanoma "JUST SKIN CANCER?; 10) WOW,I MADE IT 5, 10. 15 years out from my DIAGNOSIS!!


NOW: I think of many "regular" things: my weight and fitness levels, my relationships, my job, and mostly, HOW I BEAT A DEATH sentence!  SO, while I am completely exhausted in this picture, I am ALIVE & I beat CANCER!!!  KEEP STRONG FELLOW MELAHOMIES!!

THANK YOU CAREGIVERS

Recently I was talking to my sister about our 3rd time to host a fun run / walk for Aim at Melanoma (shameless plug!) and she mentioned that she liked to have something to do because it was hard to talk to people about our fight against cancer.


I call it "OUR FIGHT" because my entire family fought with me!!  I was the one receiving the medicine and getting the scans,but I was NEVER ALONE!  My treatment was INCREDIBLY HARD.  For a 22 day cycle,  I was admitted to the oncology ward of St. John's Hospital  for the first 5 days and I WAS NEVER ALONE. My family took care of driving me, staying with me, keeping me company when I was in between treatments.  The very first night of my treatments, my mom and sister were a block away in a Best Western and my Mom woke up at 2:00 a.m. and thought, "What am I doing here?? Steph is over there!" and she got up and walked back to my room and did not leave my side.

Fighting cancer is a family fight. The family is the first to hear the diagnosis. Family is the first to think, "what would I do if this person dies?" Family is there to hear the doctor's words about how treatment is going. For me, it was my Mom, Sisters, and Husband and daughter who were on the front line with me for this fight!  It was beyond helpful to my mental state to know these people had my back.

 My sister Kathryn was AMAZING and always tried to get me to smile. One time she went to the chapel room in the hospital that had a tv channel, and did a dance for me. My sister Amy would bring me any food I wanted when I said I was hungry, because that was rare. I would hardly eat for days and days and lost 60 pounds during treatments. My husband and daughter would call me in the hospital and talk to me about all things home, you  see, I had to leave them to get treatment and I was terribly home sick for them.

My Mom was my constant companion. Her and I would often be awake at 2:00 am, reading our books, and not knowing if I would survive another round of treatment.

SO, I can never thank my caregivers enough for being there for me. I thank you by being alive 7 years later!!

AND THANK you to all caregivers out here for your many-many hours of sitting with us cancer patients as we are often too exhausted to even talk. We are too sick to eat, and overall are not the best company while we endure treatments. Without our support system in place, the treatments are often too much for us to endure. 

Mom and Me, during treatments.

Chris and I, after treatments, skiing again!

Chris, Allison, and I during treatments.

Me and my family, after treatments were over!

almost done with treatments...screw you cancer!!!  Melanoma: SO MUCH MORE THAN "Just Skin Cancer"

FIGHT ON

During my fight I would often close my eyes and not know if I would wake up again. Too weak to walk more than 5 or 6 feet, too small to be seen under the blankets of the bed, and almost too weak to fight, but I endured 5 treatments of biochemotherapy.

"Did you get sick from chemo?" people often ask. I lost all my hair, was 60 pounds lighter than I am now, and could hardly walk.  Yes, I was sick.  During my treatments, I was not convinced I had much longer to live and decided to face my last days with 1) dignity, and 2) use every ounce of energy to FIGHT.

After I was declared No Evidence of Disease in June of 2011, I WAS EXHAUSTED, I was SCARED it was temporary, and I HAD PTSD for YEARS. Once the physical recovery starts, an entire mental recovery begins. Fighting cancer stays with you forever.

I am now 6 1/2 years out of the last treatment and surgery. I am back to being "normal." 

YET, everyday is still a FIGHT to make sure cancer does not return.  

Everyday I think about how can I help others and continue to FIGHT!

That is why I organize a fun walk/run for AIM @ Melanoma.  MY sweet cousin was also diagnosed with melanoma!  There are SO MANY people affected by melanoma. 

 TOO MANY people who think it is JUST SKIN CANCER!

I continue to FIGHT and will not ever stop sharing my story of recovery, fighting, and HOPE.

https://walk.aimatmelanoma.org/lagunaniguel2018/

GET READY

I am dedicating this post to Kody Beach.

Dear Kody,

We never met, but I thought of you often. I thought of your family, as they flew to different places to get you treatment for melanoma. You and I shared that horrible disease, but with a different outcome.  I sit here today on my computer, and you passed away in October of 2015.

Tears roll down my fave as I write a dedication to you on the AIM @ Melanoma page for the 3rd annual 5k walk / fun run.  I wish I could do more for you and your family.

I will never quite understand why I survived and you did not. You were SO STRONG and YOUNG. YOU SHOULD BE HERE RIGHT NOW!!

Thank you for renewing my desire to FIGHT MELANOMA with everything I CAN!  You and all the other's who have passed away from melanoma will not be forgotten!  Those of us who have beat the beast will continue to be LOUD. I know there are people who think I should "get over it" but I won't.

I will continue to walk in honor of YOU and the others who died from melanoma.

Heavenly HUGS to a you Kody,

LOVE, fellow melanoma warrior, Steph


consider joining me in Laguna Niguel, on May 20th, 2018.

AIM @ Melanoma

 GET READY MELANOMA : YOUR DAYS ARE NUMBERED!

9%

These 2 people ARE MY EVERYTHING, I fought for you both!! Love, Mom

Lately I have been really thinking about how amazing it is that I am still standing here today. I had 9% chance of living 5 years passed my diagnosis of stage IV metastatic melanoma. I was dying....


YET, I am here....

I want to send a quick message out to the newly diagnosed and those struggling with scanxiety and survivors guilt.

1st  Are you new to melanoma?  I am sorry you are here, but if there were a "good" time to get sick with melanoma, this is the time. Melanoma is leading the way for cancer treatments with new and more effective than when I was diagnosed. The new treatments are tailor made for each patient and encourage a person's own immune system to attack the cancer!  yay for research!!  This is a SCARY AS HELL fight you are facing, but there are those of us out here who have fought the fight and we are here to support you.


2nd SCANXIETY: it is REAL!  I spent the first half of September with an intense fear that the cancer was back. I imagined telling my family, I told my family... I cried and I planned my funeral. SERIOUSLY, scanxiety is that bad.  IT SUCKS BIG TIME. I get these panic attacks less and less... whereas my first 2 years I carried anxiety meds with me and cried a lot, and now I am down to 1 or 2 freak outs a year. THIS HAPPENS and IT PASSES. When you get to the other side of fear over a test, or a spot on your ass,(insert laugh) or WHATEVER medical test you are facing, scanxiety is REAL. Please be gentle with yourself and find a melanoma support group online.




3rd  Survivor's Guilt. This is real as well. After I have a freak out about cancer, I feel a bit guilty I am still alive. Why am I here? Why am I so special to have lived when SO MANY are gone from melanoma??  And many people who are younger than me... I do not know. When I look back to the hell I went through fighting melanoma I know I fought LIKE HELL to be alive and there must be a reason beyond my understanding for me to still be breathing.  SURVIVOR'S GUILT is real and also this passes....


One day we will see an end to cancer. One day mother's won't bury their children and children won't bury their parents who passed from this horrible-HORRIBLE cancer, known as melanoma. IT IS SO MUCH MORE THAN "JUST SKIN CANCER!"

Hug your self.... you deserve it!  Oh hell... get a GREAT bottle of wine and CELEBRATE!  YOU ARE HERE, READING MY little blog and therefore melanoma has affected you and you are STILL HERE!!