Wednesday, November 22, 2017

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!

Wednesday, September 20, 2017

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!!

Sunday, July 23, 2017

Normal

I want to take a moment to talk about the new normal for cancer survivors.  This seems to be the same across the board for all people who have fought cancer and is not limited to melanoma survivors.

There are stages of survival after treatment ends. There is no time frame for how long each section lasts, and of course we are all different and some people may or may not experience these stages. These stages are simply from my experiences.

 Stage I
Withdraw from doctor's visits: this was a strange phenomenon for me as I had become so accustomed to visiting my doctor every week and seeing a home nurse and checking into the hospital every 22 day of the chemo cycle I was on. Being an intensive cancer patient was my normal for 8 months. I was surprised that I missed seeing my doctor and being checked on constantly. It was a strange feeling and I was scared to be on my own.

Stage II
As I became accustomed to being outside in the real world again, I had to recognize my energy levels were different. I was EXHAUSTED and as the many, many drugs worked their way out of my cells, I also HURT. Often, my afternoons were spent in a recliner, crying and in pain. I was done with treatment, so why all the pain?? These were moments I did not share with many outside my family as I wanted to present a STRONG STEPH to the world. I wanted to show people I was a survivor.

Stage III
HAIR  As it came back, my hair was curly. I had been bald for so many months, I was HAPPY, oh so happy to have hair again!  What does someone do with curly hair?  I had straight hair my entire life and now I had curls. These curls were temporary, but I had them long enough to give me beauty anxieties about what do woman do with curly hair?

As I dealt with new hair and long afternoons of crying... there was another side affect of cancer that was absolutely horrible, and the new normal here was with my daughter.  She suffered terribly when I was sick and this resulted in depression that required hospitalization for suicide attempts. She was in a dark dark place after the cancer and many other sad events in her life. Depression is REAL and this sadness needs to be addressed by therapy and sometimes medication to help with your brain's chemistry. If you are suffering from extreme sadness from your treatments or a family member is exhibiting sadness...please get professional help!  These feelings can be dealt with by a therapist or with small prescription of anti depressants. ASK A PROFESSIONAL FOR HELP! 

Stage IV
Once the crying was under control and I realized I was going to LIVE I had huge moments of EUPHORIA. I wanted to scream and shout, "I AM ALIVE!!"  My energy levels were returning and after almost 2 years, the pain was subsiding. I FINALLY felt well.  It was a LONG road to this and I definitely rode emotional roller coasters of feelings regarding fighting cancer. 

For Us Ladies
SO, this topic is for the ladies, as we have different changes due to chemotherapy. I apologize if you have had radiation, as I am actually unfamiliar with that... it was the ONE cancer treatment I did not have.  Our menstrual cycles are JACKED UP after all the chemicals.  We are often thrown into menopause immediately during the chemotherapy (as I was) and there is not a lot of info out there for us concerning how chemotherapy affects our bodies.  Oncologists jobs are to get rid of the cancer. SO, when I was in treatment I experienced a LONG menstrual cycle right after the first treatment. ( I want to share that my treatment was different as I was in the hospital for 5 days the as the 3 chemotherapy medicines and the 2 immunotherapy medicines were administered all at once and my side affects were STRONG and the list was LONG. Others may have not experienced the same.) That was to be my last cycle for a long time. After treatments ended I had a couple menstrual cycles sporadically. After 2014, they were just about over, then I had one last year.  IT FREAKED ME OUT because it has been 2 years since the last one!  I share this personal info because I think the bottom line is that chemo sends our reproductive parts into a tizzy and when you are REALLY CONCERNED see your doctor. I did and was told i was post menopausal.  At 47 years old I did not like those words...but it is the cost of beating cancer. 

BOTTOM LINE
Fighting cancer causes FEAR and PARANOIA and you will often worry that the cancer has returned. When our bodies are full of chemicals, there are a lot of SIDE EFFECTS that cause pain, fatigue, depression, and overall exhaustion. The new normal for those of us who fought cancer is to have gratitude for being alive and being vigilant for recurrences. We become experts in any new treatments and have to keep ourselves from googling too much about statistics for surviving.  

NAYSAYERS
There will be people who tell you to "get over it" and some may roll their eyes when you talk about cancer. I talk about cancer to 1) to give empathy to others who are facing this awful disease and 2) GIVE HOPE to others because I was dying with stage IV melanoma that had spread from an original stage I diagnosis to a 16 cm in my left armpit and then to my lungs and pelvis. 

REACH OUT and talk to other survivors and talk to your doctor and know others have been there! Your new normal will become more normal as time passes.... that I can promise!  

MUCH LOVE, 

Strong Steph  currently 6 years NED!!  

Tuesday, June 27, 2017

Lean on ME

When someone is sick, they often become tired of being a burden on their family. They often become tired of not being able to pitch in with daily chores. They often long for times they were the caretakers. I know I experienced all of these during the times I was actively fighting cancer. It is HARD to feel like a burden to your family.  I know I wanted to hide away and fight alone as the fight was UGLY. The side affects were UGLY and hard for my family to watch me go through. Yet, they were always there for me!

I HATED BURDENING my family when I could hardly walk 5 feet after treatment...and my family NEVER allowed me to be alone EVER!  They were always CLOSE with a joke and foot rub and just to sit there... I would sleep as the pain of treatment was too much to bare, and wake up and they were there.

For the caregiver, when you are watching someone hurt... and go through the pain of cancer... know that the patient appreciates you being there and facing cancer alone is SCARY and most people want someone to hold their hand, and it is HARD to continually ask for help. Caregivers, it is OKAY to leave our side once and a while... take care of you!

How can you help if you know someone who is sick? My thoughts are only my opinion after the experiences I have had when I fought my illness with my family by my side.

Do not ask family "what can we do to help?"  JUST HELP
Bring a meal over to a caregiver, the cancer patient is often too sick to eat, I know I was.
Offer the caregiver a break and simply sit with the sick person. Cancer is not contagious. When I was sick, I was too weak to do anything really and simply sat around. While it was boring, just to sit with someone and hold their hand. Tell them you are sorry they are sick. SIMPLE

Supporting a cancer patient and their family can be as simple as letting them know you are there for them. Letting them know they are not alone. It does not need to be A HUGE dog and pony show.  When someone fights cancer... their entire family fights cancer... let them know they are in your thoughts and prayers.

I will ALWAYS hate CANCER and I WILL ALWAYS hate what cancer did to me and my family.

I believe, if we all stick together, we can BEAT this evil illness and FIND A CURE.


 Please  message me if you know anyone who needs an angel card. I believe we all have angels with us and while I fought, I know angels were with me. I LOVE sending them out to families and patients because no one should be alone during their fight against cancer.

me after treatments: 6 years ago

me this last winter... back to life

PLEASE offer HELP & ASK for help, it is OKAY, we all need someone to lean on sometimes!
Lean on Me

Tuesday, June 13, 2017

RVs & Getting Older

Yesterday I passed an RV lot off the freeway and teared up. I realized that RVs represent retirement, travel, and vacations! As my sweet husband drove I knew I'd  have the opportunity to do both! I get to get older, I get to travel, I get to retire from my job! My cancer test came back clear! Tears roll down my face because I to hadn't really realized how stressed out the whole thing had really made me. Even though we're going on six years since my last treatment, the memory of it can't come right back, to the forefront of my brain. The horror of melanoma. Melanoma is so much more than just skin cancer. What you were diagnosed with it you always have to keep a lookout. It can come back in our brain, our lungs, or just about anywhere.  I am so grateful for the good doctors at the Angeles clinic, and the researchers, and the nurses and office people there! It's so important to be an advocate for your own health care! Don't settle for anyone that gives you a life expectancy of a few months. Because you just never know!

 Next time I frown at the age marks on my face, the gray hair, which I color, I will remember that I am blessed to still be here and approach each day with lots of gratitude.

I love my family and friends and everyone who supports me every time I get a cancer test! Everyone who is rooting for me to stay clean. Take care people!! Love one another, because you never know what's going to happen next!

I get to get old with this sweetie!


Sunday, June 4, 2017

Melanoma, the Myth

Today is June 4th.  Melanoma awareness month ended 4 days ago.  Yet, everyday for me represents melanoma awareness.  You see, I am a stage IV melanoma survivor.  In 2011, my life expectancy was very short.  With a 16 cm tumor wrapped around my brachial plexus nerve in my left armpit, lesions in my lungs, and lesions in my sacrum.... I was dying.   In 2011 there were few choices for people in my position.


You may be thinking, isn't it just skin cancer?  Can't you just cut it out?


This is the myth.

OK, you can cut it out, but one who does must ALWAYS BE VIGILANT against the BEAST.  Melanoma is one the fastest metastasizing cancer there is with a very low rate of survival for those who are diagnosed.

Some of the worst myths out there are that UV rays do not cause melanoma. Evidence shows us that exposure to tanning beds and or extreme sunburns can damage your skin and once your skin is damaged at a molecular level, you can develop melanoma. Researchers are doing their best to determine genetic risk factors for melanoma. In my family, my mother had a stage I melanoma, I had stage IV, my cousin had a stage I melanoma, and my daughter had a precancerous mole removed already!  SO we definitely possess some predisposition to melanoma.


The bottom line: melanoma is more than something you can cut out, and melanoma is more dangerous than people think.

That is why I planning the 2nd annual AIM @ Melanoma Walk for a Cure in Laguna Niguel, CA.  This event raises money for research that is finding a way to CURE melanoma!  Please check out the link below and come say hello, I will be there!

AIM @ Melanoma






Sunday, April 30, 2017

Pictures






This last picture has 4 Stage IV Melanoma FIGHTERS..... 2 are now gone.  #MoreThanJustSkinCancer
#MelanomaAwareness

Friday, April 14, 2017

FEAR & JEALOUSY

Hey you.... the one sitting on the bench enjoying the warm afternoon sunshine. Where are your sunglasses? Where is your hat?  How can you lean back and close your eyes while sitting right in the direct sun??  I am JEALOUS of you!

Unlike you, I worry about each minute I am in the sun without a hat or sunglasses or sunscreen.  I am aware that last week I spent about 24 minutes in direct sunlight without my hat. EXTREME??  

YOU DO NOT WANT TO KNOW WHAT I KNOW ABOUT "JUST SKIN CANCER!"

If you are new to my story, in the fall of 2000, I had a small and malicious "freckle" removed off my left forearm. This "freckle" was melanoma and resulted in a lymph node biopsy. LUCKILY, at that time, there was no more cancer in my system. My stage I diagnosis remained stage I for 10 years. Then, fall of 2010, a tumor began growing in my left armpit. It became the size of a grapefruit and by Christmas of 2010 I was officially stage IV metastatic melanoma ... with 4-6 months to live.  With some divine intervention, I found the Angeles Clinic in Santa Monica, and Dr. Hamid. He experimented with my treatment and prescribed biochemotherapy.  After 5 rounds I was bald, skinny, but ALIVE.  I am currently 6 years No Evidence of Disease.


The treatment was extremely difficult and throughout this time we were not sure I would survive.

OK, back to the sun....  

Do you sit outside with no worries?? I am jealous of you.  No worries about the sun. I wish I were you. 

The truth about the dangers of the sun:



I live with the fear of melanoma returning always.  I am currently N.E.D., but my melahomies know.... this disease is sneaky and heartless. It can come back at anytime....  



SO, get the right info and protect yourself from the sun.  

Peace!  

Saturday, January 21, 2017

Message for New Melahomies & Families

I wanted to take a moment to send out a message to those who are new to the world of cancer... or even to those who are STILL here, fighting the beast!  

While melanoma comes with some HORRIBLE statistics.... it can be beaten!  6 years ago I was fighting for my life. I had a doctor tell me to go home.  I had another tell me he'd try to save my life, and he did!  My family and I went through hell as the medicine fought the multiple lesions in my lungs, the subcutaneous tumor on my abdomen,  and in the massive 16 cm tumor in left axillary lymph nodes. Left untreated, I had 4-6 months to live.

I know you are scared as hell, I know you cry at night when everyone else is asleep. It is hard to be brave all the time. I know you feel pain every time your port is accessed... and some nurses are better at it than others and you end up feeling like a pin cushion for all the blood draws.  I know you worry beyond words about how your family will deal with your death if you do not survive.  I know....Some days are harder than others and allow yourself time to be still and quiet. There is no easy way to fight melanoma or any cancer. It is painful. I remember one drug felt like pins and needles as it entered my veins... another we nicknamed "shake and bake" for the fever I developed while on it. 


Fighting cancer is serious business!  

PLEASE KNOW that I AM here praying for you!! I am painting more ANGELS to send off and WOULD love to mail you one!  


There are so many new medicines approved for treating melanoma and more and more people are BEATING THIS UGLY DISEASE! Just know, for what it is worth, there are those of us who have been there and we are here... and we are praying... and we understand.  This is a photo of my Mom and I during treatments. I had 22 day treatment cycles, and this was the 18th or 19th day after one  of the five of 5 treatments... and I actually felt like going out and eating for a friend's birthday party.  

HUG each other and cherish one another.