Summer 2018

As a teacher, I am afforded the opportunity of 10 full weeks of whatever I want to do! "Must be nice"...yes, as a matter of fact, it really is! I love teaching but those who know me, also know it has never been and will never be an 8-3pm job. I am often one of the first at school and more times than not, one of the last to leave.  It is a labor of true love with LONG hours, endless emails, papers to grade and plan books to update.  I plan for 6 different classes every day, spanning 8-grade levels and manage to juggle courseloads plus advisory positions.  It is a HUGE commitment to my students and their successes and have yet to feel like I am really good at it so I keep returning, year after year to practice getting better.

So when the summer break comes, I check out.  I need to.  I need a serious recharge.

This was the first summer in my entire 13-year teaching career I was not working summer school or some other summer job.  While summer break is an awesome opportunity to shift gears, the reality is...it is also 12 weeks of no additional paychecks so working has always been a means of survival.  But this summer...events led me to a place where I  did not work and I will say- BEST SUMMER BREAK EVER.

Living organically and authentically means one allows life to evolve in whatever direction it is meant to follow.  In years past, I generally had a good sense as to how my summer was going to look by end of March but not this year.  This summer was evolving into something better.

I had a wonderful opportunity to join a friend sailing.  We were originally planning to meet in Turkey and sail down to Greece but as we got closer to the summer, plans were switched to Croatia.  I used to live in northern Italy (Udine region) so I knew the area was super pretty but the last time I was there, Croatia was in the midst of a war for independence.  I was not sure what I would experience but I was up for it.

I was surprised by 2 things...not only how unbelievably beautiful the landscape was but the people as well.  I ended up spending 3 weeks falling in love with the people, food, culture, music, and patriotism.  It was better than I could have ever imagined and I found new experiences daily that took my breath away.

A new focus

It has been a LONG 3 years since my last post and for good reason...I had mentioned in a previous post about survivor's guilt, let me just reiterate- it is a REAL phenomenon making a blog posts feel invasive while adding to the guilt.  Instead of putting myself out there and feeling tremendous guilt for a seemingly easy course dealing with cancer, I held those feelings within and ignored the blog.  It did not change my commitment to OM, nor did it keep me from periodically posting on social media so I have maintained some connection to this cause and points of awareness.  I have actually met OM patients who have read my blog!  One, in particular, I became a mentor to as she started her journey with OM.  I often called her as she had questions and concerns about surgeries and recovery.  She is doing great now and is under the care of the best doctors...I was thankful to have been a small part of her journey through my blog. 

But as life continues to evolve for me, I find myself broadening my interests, taking on more challenges and reaping BIG rewards.  I live a GRAND life, one full of adventure, creativity and perspective and I have decided to use this blog as a means to share this crazy and fun adventure I am on.  For those who follow along, you get to share with me.  This is my creative outlet for the wonderfully inspired journey I am on.

Yearly check...check!

8 months ago, I set up a dermatologist appt for my yearly check skin check and I will admit it- it has been more like 5 years. (Hanging my head in shame- I know, I know)

It wasn't that I was scared of anything...it was more about NOT being afraid. Melanoma is something I live with everyday but since the primary care I receive focuses on my eye care, I ignore the other parts of me.

One of the first things that impressed me about my dermatologist. ..he asked right away "Do you see a dentist who looks into your mouth often? Does your hairdresser check your head? See an OB yearly? Notice any darkening  places around your nail beds?" Oh my gosh...he gets it!! We quickly discussed all the other areas of our body that rarely sees the sun where melanoma  can be found...this doctor was on the ball before I even needed to say anything!

So the skin check was easy...he pointed out spots, lumps and bumps...described their melanoma risk level and what to watch for. Since I have very few actual moles, I have a low risk for melanoma overall but considering my family connection (my uncle passed away from melanoma) and my own personal history with ocular melanoma, we are still watching some spots.

I was asked if there was anything I was bothered by and there was. On my right shoulder, right next to my neck, ever since I was a young child, I have had 2 moles I nicknamed my "vampire bite". I have two more on my upper chest and as I have aged, all 4 grew in size, changed to a lighter shade of brown and became fleshy (was told this is normal) but then one changed in a way I didn't like.  It changed back flat, darker and irregular shaped. It bothered me enough I asked it to be looked at. The doctor suggested removing it considering my history so that is just what we did.

It was the first biopsy I have ever had but I wasn't concerned at with the process. It was painless and simple.

The hardest part was looking in the mirror and mourning the loss of my "vampire bite" I actually loved it there.  But as a fitness instructor, it was in a place on my shoulder that rubbed up against my sports bra and was often irritated so I am just thankful to have one less thing to worry about.

And yes..my appt for next year is already made :)

Taking on the big town!

Sydney and I ventured a trip to Washington a couple weeks ago...and by venture, what I really mean is, we took the city by storm.

Sydney is my little sidekick. The cuter counterpart who loves to travel and take on new adventures as much as I do...if not more... so when I suggested "Let's take a trip to Washinton, DC and attend Hill Day with Melanoma Research  Foundation", of course she said, " Why not..sounds like fun!"

So, emails sent, hotel and bus tickets book..a plan was enacted.  Hours later, we arrived in DC and one of my favorite places to be is in a train station. Union Station is no different. I have no idea why I love train stations so much but I have yet to be in one I dislike. Maybe it stems back to my 16 year old self, riding trains through Europe or the idea of just going somewhere new..it's nestalgic.

And surprisingly so...DC, although it has many homeless, it feels safe. And clean. Even at 10pm.

Tourist moments aside, we were there on an agenda. To learn how to best advocate for more funding and focus upon melanoma research. We listened and learned about the judicial system, how laws become laws and get passed, how to speak ro our state legislative members & how to best be heard. We became empowered in our voice.

But the most important part for Sydney and I was connecting with Melanoma warriors and supporters in all sizes, shapes, ages and experiences.  We were amongst giants. We were amongst people individually making small efforts but collectively, making a big difference.  Most of all, as a mom, I watched a light ignite in Sydney. It wasn't long before Sydney had a 2 year old melanoma patient on her lap, snapping selfies. ( he is currently under chemotherapy treatment- one would never know)  We met Mason and Graham, Isaac and others...they all mattered.

We also met Suzanne, who in her own right, has an amazing story.  She is a stage 4 survivor- 6 years ago, had a mole removed from her hip with 5 years NED. Then a scan revealed tumors on her liver and lungs. They were removed or treated but after she collapsed at work, they discovered brain tumors. So 4 weeks before meeting her in DC, Suzanne had brain surgery. I was impressed by her calmness as she shared her story. I was awed at her beauty. She reminded me why this is such an important  mission.  She was alive because of current research and drug therapies.  I am alive because I had a doctor willing to try something brand new, a treatment  never attempted before. She and I were living proof we needed to keep getting the word out about melanoma awareness, research and press forward so others had equal access to good healthcare, treatment options and the best outcome possible!

So off we went to the Capital on a BEAUTIFUL spring day. It was marvelous.  The various offices we visited were receptive and willing to listen as we shared our stories, shared current melanoma materials and took a moment to just enjoy this time.

So...it was a life changing moment for Sydney and I. We will do it again. We made new friends. We grew deeper in appreciation for melanoma warriors. We felt confident in the suppprt we received from Melanoma Research Foundation.

Next year, we will do it again!

In the meantime, Sydney has now started her own blog. The girl continues to amaze me.

www.standagainstthesun.blogspot.com

A new start

Have you noticed I have been gone.  There is a reason for it.  I hit the ground 2 years ago with a clear vision~  I had a voice of being a cancer survivor~ a rare cancer~ and if I spoke, people would listen and maybe protect themselves.

Well, they did.  I was invited to share my blog with Melanoma Research foundation, invited to write about my experience on skincare.com, connected with countless patients, parents, friends and loved ones who shared their cancer experiences.

Then something strange happened.  I wanted the attention to stop.  I was embarrassed to share my story- I felt exposed, vulnerable- like I was self indulging and self serving which was exactly opposite to what I had hoped to accomplish. I was embarrassed as I recognized my story was strangely unique.  I lived.  I never went through chemotherapy.  My cancer was contained, treated and I have been NED for nearly 10 years.  I was never "sick"- tired but if you know me...I recovered and was back to life in 3 weeks. How dare I feel I have a voice...I didn't feel entitled to be a "warrior"- there wasn't this warrior fight.  I was diagnosed, treated, moved on...

Guilt.  I felt guilt. Immense guilt. 

Last summer, I sat on my dad's porch and shared with him my experience. My dad has been my number one support and counselor so after almost a year of these feelings, I needed to share with someone who I trusted.  And finally expressing it helped me put into words I couldn't find for the emotions I was feeling...Survivor's guilt.  

Copied from Cancercenter.com

What is survivor guilt?

Survivor guilt is common among survivors of traumatic events—such as war, natural disasters, accidents, and even acute or longterm illnesses such as cancer. Survivor guilt refers to the sense of guilt or responsibility that can occur when one person survives a traumatic event that others did not. And, yes, cancer can be a traumatic event.

“Not all of our patients experience cancer as a traumatic event,” explains Rhonda Colley, MS, LPT, LMFT, a mind-body therapist at Cancer Treatment Centers of America® (CTCA) in Tulsa, Oklahoma. “But even if they aren’t traumatized, they can still experience survivor guilt, which means basically feeling guilty that they got through this treatment journey relatively unscathed.”

This may not make sense to someone who has not walked the cancer path, sat with fellow patients in the waiting room, compared diagnoses and treatment plans, and given and received encouragement throughout the journey. But to a cancer survivor, it makes perfect sense, and it is another part of the cancer journey that must be processed.  


So...now what.  I have talked with other cancer patients and sure enough~  This is normal. I breathed a sigh of relief as I discovered they almost all felt it at one point or another.  It is just a part of the journey.  It was the part of the journey I was not prepared for so it took me over a year to understand but now that I understand it, it is time to bring about new focus.  

Reflections of the heart

Today is National Cancer Survivors Day  

Three weeks after my last surgery to remove the plague on my eye- my radiation treatment for ocular melanoma- I sat on my front porch stairs attempting to navigate phone calls to doctor's offices to schedule further scans while trying to read through and understand the mountainous insurance claims coming in the mail daily.  I burst into tears.  I was overwhelmed and exhausted.  And alone.

So many survivors know and clearly remember that moment when bravery has been used up and all levels of emotion rise to the surface like high tide.  No matter where you turn, you can't hold it in anymore and the flood gates are opened.  I always put on a brave face for my children and my friends but secretly, I had never been so scared and so overwhelmed in my life before.

I once had a friend play a practical joke on me at night.  I had run over to my apartment quickly and as I was running back to a friend's place, he stood in the pitch dark car port and waited for me to appear.  He then started this low growl which increased in loudness and intensity as he slowly approached me.  I had no idea what the sound was nor could I tell where it came from.  My first instinct was to curl up in a ball as my heart started racing a mile a minute and I stopped breathing.  Previous to cancer, this was the nearest I had ever gotten to being scared out of my mind.  Now, as I sat on my porch, my instinct was to curl up in a  ball and stop breathing.  My world was spinning and I had no idea what was coming next.

So, what got me through that moment?  A dear, non-judgmental friend with a heart of gold and the patience of a saint.  While out running errands, he popped in to see how I was doing.  Little did he know that he would be my angel for the day.  He let me cry while holding my sobbing shoulders.  He never looked at my swollen eyes, now matching in redness and try to tell me to be strong or peptalk me into feeling better.  He let me cry.  He listened and he allowed me to move through the release of emotions I had bottled up in order to stay strong.  A brave face is really just fear with a smile.  I needed this cry as much as I needed radiation.  It was what I needed to refocus and keep moving forward but for that moment, I needed him and I needed to cry.

Last weekend, I was lucky enough to drive to Corolla, NC to be a part of an unofficial Latter-day Saints singles weekend in the Outer Banks.  I love the Outer Banks...it truly is my oasis.  There I met 25 brand new friends and we spent the weekend learning about and appreciating one another.  We all had gifts, talents and stories to share and it amazed me how we bonded so fast although we all came different walks of life.

This weekend, I had another similar experience but with a different group of people.  We all had Ocular Melanoma in common.  Each and every one of us had a story to tell.  Each and everyone of us were bonded instantly by circumstance.  As I sat listening to them share their experiences, I could hear the emotion in their voices and soon my own emotions came back.   Bravery is merely fear with a smile.  The emotions are raw sometimes and as hard as you try sometimes to put on that brave face, you are always on the edge of spilling over into tears. I listened to a young mother, whose husband was diagnosed 3 years ago and who lost his battle 8 months ago, leaving behind a coping young wife and 3 children and my heart broke for her.  She just wanted 6 more months and has questioned every step of her experience as to whether or not she did everything she could.   As another friend shared about her first conference with other ocular melanoma patients, it becomes overwhelming for her. I was overwhelmed 7 years ago and still am sometimes.  It took me 7 years to feel strong enough to share my story.  It took me 7 years to feel brave enough to face other patients and be a pillar of strength to them.  It took me 7 years to be able to feel strong enough to read other people's stories.  And in one 2 hour lunch, I was brought back to the raw and unexplained emotions I felt back then as if time had stood still.  As I sat at this table surrounded by other warriors, I knew I was  the one with the longest history of cancer.  Seven years ago, not a single one of these brave women knew of ocular melanoma or even dreamed they would be diagnosed or have a family member diagnosed with such a  rare and deadly cancer.  Seven years ago, I was living that experience.  Alone and overwhelmed.  Today, we are each other's support network.  I am no longer alone.  I am surrounded with love and support and together, we are reaching out to others so they are not alone and overwhelmed.

Caregivers of those with cancer are SO vitally important to their healing process.  Equally important are the angel friends who come hold our hand, send us texts and emails of love, advocate for our care and love us unconditionally through our pain and fear.

So although today is National Cancer Survivors Day- in my mind and heart, it is also National Cancer Support Day...we are survivors because we have been loved through the good times and the bad.  And those who lose their battle to cancer and are called home all too soon, their families are the survivors.  The one who put on the brave faces everyday and know all too well these same raw emotions just as much as do the patients themselves.  So hug a Cancer Survivor today...and tomorrow and the next day.  We need each other.

Standing among giants!

Ahhhhhhhh.....

I have just returned from a weekend of spoiled and blissful treatment while attending the 1st annual Volunteer summit for the Melanoma Research Foundation held in Washington, DC.  Yes, Washington, DC.  I LOVE Washington, DC and I love to travel so I jumped at the opportunity I had to get away from my world in NY.  I was most interested in learning about Mile For Melanoma, a fundraising program as part the MRF Foundation, so despite tons of doubting self talk going on inside my head, I hopped on the train and off I went.

So after settling into my luxury hotel room (ok, clearly...anything that entails matching sheets, folded towels and warmth is luxury in my world), I blissfully slept and was ready for what my weekend would bring.

As soon as I walked to the elevator and met 2 conference attendees, I immediately knew all those self doubting thoughts in my head were wrong...this was where I belonged.  Not only was I now putting faces to the email names, I recognized I was sitting among giants.  I was sitting among cancer brothers and sisters.  I was sitting among my own kind.  People just like me who live with cancer, people who know what it feels like to be a warrior and a survivor.  I sat among beautiful battle scars, stories of life and death, brave choices and encouragement.  As each person introduced him or herself ..it didn't matter if we were from Los Angeles, CA or Kennebunkport, ME...we all were connected.  We all had been touched by the ugly monster called Melanoma. We instantly became soul mates.

Steve Silverstein (MRF chairman of the board), Mary Mendoza (MRF national director of volunteer services), myself and Tim Turnham (MRF executive director) 

So as Tim, Mary, Lauren, Carolyn, Jena, Torrey and Shelby  put up with our constant need to share our stories and connections with one another, we were instructed on how to fulfill our duties as advocates, fundraising champions and visionary warriors in our own rights, helping to move forward the mission of Melanoma Research Foundation and Miles for Melanoma. Their excitement and knowledge was contagious.  Laughter and ideas were being shared everywhere and this was what we all needed.  We needed a vision and a vision we received.

Tim Turnham, Executive Director of MRF hared a brief history as to where MRF started:  

The Melanoma Research Foundation was founded in 1996 by Diana Ashby, a melanoma patient.  Diana created the MRF after three years of battling the deadly cancer, a period in which she grew increasingly frustrated with the ineffectiveness of the current medical treatments for melanoma. This time also marked the emergence of Diana's especially strong sense of compassion for other melanoma patients, a trait that became the catalyst for her actions in the final year of her life.

After the tragic loss of several close friends to melanoma in the early months of 1996 and the third recurrence of her own tumors that summer, Diana's frustration turned to determination and she began to investigate alternative therapies and trials for promising new drugs.  She discovered that the research and development of such new treatments were often stalled due to inadequate funding.  The founding of the MRF was the result of Diana's struggle and will to make a difference. 

 Taken from the MRF website       History of MRF

Did you know.....

Melanoma is the fastest growing cancer in the United States and worldwide.

• You will have approximately a 1 in 50 chance of developing melanoma throughout your lifetime. 
• The incidence of people under 30 developing melanoma is increasing faster than any other demographic group, soaring by 50 percent in young women since 1980. 
• Melanoma primarily affects individuals in the prime years of life, is the most common form of cancer for young adults 25-29 years old and the second most common cancer in adolescents and young adults 15-29 years old. 
• Although melanoma is most common in Caucasians, melanoma can strike men and women of all ages, all races and all skin types. In fact, did you know Bob Marley died from malignant melanoma???

As the weekend progressed, it was becoming obvious that my rare disease was truly a gift of life. My uncle was diagnosed with melanoma at the age of 34. He was a farmer in upstate NY and the mole on his arm, which was exposed to sun all the time, was removed in his doctor's office. What they didn't know about melanoma in the 1970's was how to properly treat moles and worse yet, melanoma was a death sentence. There was, and remains still today, no cure for melanoma. My uncle left behind a young wife and daughter which filled my family with sorrow and unanswered questions.

Fast forward 30 years. I was 33 when I was diagnosed with Choroidal Melanoma, a rare ocular melanoma. When I heard the word "melanoma", I heard death. Cancer had taken every member of father's family I knew but this was the first time that there was a commonality of cancers in our family history. For this very reason it sucked the air out of my lungs. I only knew death associated with melanoma.

Through my interactions with other summit attendees, I connected with their stories. I knew their heartache from both sides- both as a family member of someone who had died from melanoma but also as a patient recently diagnosed. My gift now is that although I faced death head on,  I am also right on the edge of life, love, hope, joy and promise. There exists opposition in all things...so too is my cancer. My uncle died of melanoma. I am living with melanoma. God has provided me with the tools and support necessary to tell my story. This is why I am alive. 

As the teacher was being schooled, my heart started opening to possibilities. The motto for the weekend became "Think REALLY BIG and then think really small". I personally have a goal to partner up with my local triathlon club and develop a MRF triathlon. This would be a HUGE undertaking but again...Think REALLY BIG matters and I can certainly start by thinking really small.

So...thank you Melanoma Research Foundation. You have given us some wind under our wings. We hope to make you proud!

www.melanoma.org