Friday, August 31, 2018

7 YEARS NED!!!

When you see me today, you would never guess I almost died. I wouldn't guess I almost died. Yet, I did almost die.

Fall of 2010 I was diagnosed with late stage cancer, stage IV melanoma cancer.... spread to my lungs, sacrum, and a large 16 cm tumor in my left armpit which was wrapped around my brachial plexus nerve. It was frightening and painful.  I had 5-8% chance of living 5 years.

Well, I am more than a number and more than odds given to me.  I often like to even forget it happened. But, I will ALWAYS have to be diligent in cancer checkups and due to the HIGH statistics for recurrences in melanoma, I can never not be concerned...
FOR TODAY, I AM ALIVE!!



I am writing today's blog for an update on life at 7 years NED.

For the first couple of years after treatment I spent a lot of time sad. I was dealing with survivor's guilt, PTSD, fear or recurrences, and overall exhaustion from the treatments themselves. My body had bring brought to the edge of death and coming back life WAS extremely HARD. My brain was foggy, my body was TIRED, and my joints HURT. I was unsure I would ever feel "normal" again.

The third and fourth year after treatments I improved in energy levels, my brain was recovering and I overall looked better!  I began putting weight back on and my hair was growing out. (I had lost 60 pounds and all my hair during treatment.) I cried less and was able to have energy for more activities.

The fifth year out of treatment to now: I basically am "normal."  The parts of me that as good as it gets are unseen by all. My left arm suffers from lymphedema. If it is hot or I use it too much, I then swell. I wear a sleeve to help. My brain power is pretty good! I can remember what I need to remember. There are still moments in time that are GONE from my memory. It is so strange to have moments lost.... completely erased from your brain. I compare it to an etch-a-sketch, my treatments completely shook up my brain cells and memory!  My energy levels look good and feel good, but there are still times I basically run out of steam and collapse with exhaustion. It is hard because I am a teacher, the job that asks of its people more and more and more. There is only so much I can give, but I do my best.

SO, anyone out there who is not knowing how they will feel after treatments: BE PATIENT.  You do get back to a "normal" one day. It is okay to sit down, watch a funny movie and let the dishes stack up. It is okay to ask someone to bring you lunch. It is okay to say no to social engagements (or work) because you have given all you can give.



 It is hard to explain to people what cancer treatment does to person's stamina and energy and brain!  I know!  I know people do not understand because I look FINE and it was 7 years ago I stopped treatments. For me, I was on the brink of death and basically have been coming back from that for 7 years and I AM GRATEFUL to be ALIVE.

Take care of you PEOPLE!  HUGS TO ALL MY MELAHOMIES who are in the ACTIVE BATTLE of fighting active disease.


Monday, July 23, 2018

Authentic Self : Lessons from Cancer

It is somewhat cliche to say and cheesy, but I have learned lessons from fighting cancer. It was hard at first to admit there was anything good about the experience. Also, I would never want anyone to go through the life changing experiences of fighting cancer. What I feel is most important for me is that I am now truly, my most Authentic Self.

Explanation:

1) When first diagnosed, I was very sick. The reality that I had a 5-8% chance of living 5 years was a hard pill to swallow. I had just turned 40 and my daughter was only 12. My career was going and I simply had no time for cancer.

OKAY SELF: you do not get to choose to be sick or not to be sick. You had to deal with the diagnosis. Sure,we can do what we can to prevent cancer, but as of late 2010, your path was to FIGHT. If you survive, well, that was out of your hands completely. It is time to truly look inside myself and be true to me only... time to survive!


2) I fought like hell.
round 1 of biochemotherapy

round 2 of biochemotherapy

a visit with my daughter, too tired to do anything but lay in bed
round 3... losing my hair

a visit from my family

my sweet husband

after surgery

finally home!!


During active fighting of cancer, I was in each moment because I did not know if I would wake up. Literally, I would close my eyes and not know if I would open them. You have to be OK with that and you have to allow the medicine to do its job. When treating cancer , there is no guarantee that the cancer will respond. Melanoma likes to go to your brain and liver and for me I had brain MRIs frequently! During treatments I was admitted to the oncology ward of St. John's Hospital in Santa Monica. 

The soul searching I did during treatment is quite hard to explain. I came to believe that there is a poweOK with dying know that my family would survive if I passed. I also wanted to die occasionally to end the pain of the treatment. (I do not tell a lot of people that.) I had to let go of anger and resentments. I was barely alive and thought my last views in the world was going to be Los Angeles Skyline. 

3) YOU ARE ALIVE, NOW WHAT??

Survival: There are many stages after treatments end. 
Here are a few: "HOLY SHIT!! WHAT JUST HAPPENED?" "I'M ALIVE!! I'M ALIVE!!!" Survivor's Guilt is real. 
Fear of a reoccurrence is CONSTANT.

People shunned me when I returned home, hardly anyone in my town of 150 residents came to see me and people even turned there back on me in town, literally. Guess I looked scary...sad

HOW CAN I HELP OTHERS WHO ARE FIGHTING?

Now I am 7 years NED and I have learned that I need to be my Authentic Self. What does this??

BE TRUE TO ME
Say what I mean, don't say it mean. 

My life is fantastic now. I moved away from the town that shunned me when I was sick. I still teach children and love helping kids see a value in education. I live near Yosemite and enjoy many hikes and vistas there. I am honest with others and do my best to spread kindness and love into the world. 

me hiking to upper Yosemite Falls!


LIVE TODAY AND BE AWESOME!  BE KIND TO BE OTHERS!  KNOW THERE IS HOPE IN BEATING STAGE IV CANCER, I DID IT, SO CAN YOU!!! BE YOUR AUTHENTIC SELF!


For more about my fight: read my little book. 





Thursday, July 5, 2018

HATE CANCER

Recently one of my best friends was diagnosed with breast cancer in both breasts. Tears immediately began to pour down my face. The diagnosis of cancer is NEVER easy. I do not care if it is a "low grade" diagnosis, as the one my friend has, because she is still facing a double mastectomy and possibly radiation.

Now I am on the other side and I am the friend of the person who is facing the diagnosis. I am heartbroken because I know how hard the decisions ahead of her are going to be. Fighting cancer is a full time job. Once you here those words, "It is cancer," your life is FOREVER changed. You now have to make sure you are being seen by competent doctors, and ensure you are getting the best possible care. You are faced with life changing surgeries and treatments. Now I begin to navigate the best way to support my friend as she faces cancer herself.


That is why I am actually posting this blog with the f word:  I HATE CANCER. Cancer SUCKS and I hate that it is reaching so many people. I believe that there is a cure out there... and that less people will have to face chemotherapy with all the research being done in immunotherapies.

Together, we can make a difference! 





Tuesday, June 19, 2018

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!







Sunday, June 10, 2018

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/

Wednesday, April 4, 2018

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!!







Sunday, March 4, 2018

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"