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"


Saturday, February 3, 2018

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/

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