Saturday, March 28, 2015

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 :)

Wednesday, March 25, 2015

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

Sunday, March 22, 2015

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.  

Sunday, June 2, 2013

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.

Tuesday, March 19, 2013

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





        Saturday, March 9, 2013

        Spring in my step...maybe?

        Once a month, I set everything in my world to the side.  For one day, I am not a mom or a daughter, not a teacher, athlete, coach or friend. For that one day, I am a patient.  For that one day, I have the monthly reminder that I live with cancer.

        Since there are so few ocular oncologists, I make the trek to NYC which usually turns into a full day 8 hour trip when it is said and done.  I have done it now so often, I don't even bat an eyelash at it (no pun intended). When I started going to Manhattan, everything was so new and overwhelming.  I had to not only navigate the new world of cancer but also planes, trains and automobiles...and usually with dilated pupils!  But, true to my nature, I have figured it out and this upstate country girl has flourished in this new adventure...and here I am to share it.


          Today starts at the train station.  Despite Poughkeepsie's CRAZY roads (who was the civil engineer who designed them??), it has one of the most beautiful train stations with a gorgeous view of the Hudson and of course, the Mid Hudson Bridge.


        And it despite how ever many times I have been there...and any time of the year, it still takes my breath away.  There is nothing grander than Grand Central Station.  It still remains one of my favorite places in NYC.  After spending years in Europe, it is as close to touching my international heart as I can presently get.  I love hearing all the different languages and the food, oh the food!  Just take a look!


        Of course, the food and Grand Central Station are not the purpose of my trip.  They are part of the adventure!  So, from Grand Central...it's off to my second home!

        Every month, we find something new...a year ago, I was involved in a clinical drug trial for Lucentis and all of us in this trial had wonderful results.  In fact, many of us had a restoration of vision.  Unfortunately, the FDA did not continue this trial and I, along with others, were forced back onto a less effective and significantly cheaper drug called Avastin. The trouble with Avastin is that over time, it loses its effectiveness.  For now, it is working but I believe we are on borrowed time.  For the last 2 months, we have watched tiny aneurysms develop in my retina, which clearly indicates the dosage of Avastin is on it's last legs.  I have one more step up in dosage...after that, options are significantly limited.  Luckily, I was towards the back of the pack when it came to transitioning back to Avastin from Lucentis so there are a couple of patients ahead of me in this adventure, acting as guinea pigs and helping us determine the best course of action.  For now, I am adjust to the change in my vision...and secretly mourn not having Lucentis as a treatment option. 


        Look deep into my eye(s)...ok, maybe not!

        For now...things are stable and we will keep them there as long as we can.  Every six months, I have a thorough exam which includes ultrasound, angiogram and more indepth scans, usually involving both eyes. Today was fairly simple...one scan, a couple photos of my tumor, measurement of the pressure of my eye, vision test, injections- one on the surface of my eye to numb it and the second,  Avastin, into my eye.  After about 2 hours, I am free to go back into the city life.  Surprisingly so...today was a quiet day in the office.  Most people have avoided coming in today due to the incoming snow storm.  NYC was predicted to have a dusting to 2 inches of snow by morning...where I live, 6-8 inches.  I am not scared...bring it on!  I live with cancer!

        One of the best part of being part of Dr. Finger's office family is that everyone knows me. They always ask about school, my children and races I am scheduled to run.  And I know about them...I know whose son was married the same place I vacation.  I know about recent engagements, marriages and the birth of babies. I know the hopes of the new doctors as we share stories and what countries the visiting doctors are from.  I know the office's recommendations for lunch, candy and cultural events.  And I know they have my back.  I know they are vested in my care. I know this one day out of the month is worth it to me!


        So, as I head back north, the snow starts falling.  It looks to be the last snow fall of the winter season or so we hope.  Spring is right around the corner and all of us in the northeast are ready to have some green grass and flowers back in our lives.  I reach this part of the year and always reflect upon how grateful I am for the new year and the fresh start. So...off to home for another month. Green light and smooth sailing for just a little while longer.  

        Here comes the snow!

          

        Friday, February 22, 2013

        ‘When the doors of perception are cleansed, man will see things as they truly are, infinite.’


        "Cancer didn't bring me to my knees, it brought me to my feet."
        ~Michael Douglas

        Well said Michael.  Such was the case for both of us!

        I was diagnosed 7 years ago.

        Lucky number 7 which started right after a painful break up with my fiancee'. I made the choice be selfish for moment in time and it made the difference between living and dying.  Now why was my break up an important moment?  
        Well, at that time, I had just started graduate school having completed my undergraduate as a single mom.  I was truly burning my candle at both ends...waved to the children as they boarded the  school bus daily, jump in my car to go to classes all day only to zip home fast to greet the children as they came back off buses.  Then after the children were sound asleep, I was on the computer punching out reports and papers into all hours of the night.  My weekends were booked working 12 hour shifts while the children were with their dad.  My engagement was a highlight of this CRAZINESS but it was short lived- seemingly unimportant to some.   But for me, the break up really meant..."Time to take care of myself and make me a priority".  That meant the silly things going on with my vision needed to be addressed.  I needed to see a  doctor.


        I was working one weekend and I watched someone walk into my field of vision, disappear and then show up again.  Wait...did I just see that- or not  see that?  I can only imagine how I looked on the security cameras as I started holding my hand over my eye, opening and closing my eyes trying to determine if what I saw was true! It was true.  She was there and then disappeared only to reappear later.  A couple weeks later, I had a new symptom.  I saw a light flash...like when you get hit in the eye but this wasn't just an ordinary flash.  It was circular in pattern and it turned clockwise. I have since learned At first, it happened maybe once every couple days but when it increased to several times a day, I knew my priority of seeing a doctor had shifted as well.

        So, my eye doctor gave me a referral to a specialist.  After my eyes were dilated and he did his exam, he gave me another referral to a retinologist with the comment "I see something but don't know what it is.  I do know it is not a tumor." REALLY??

        Ok, maybe I was making this up and it wasn't really anything to worry about.  Maybe I should just let it be..he said it wasn't a tumor.  Maybe I am just overtired or stressed and my weird vision is from too little sleep, too much caffeine...too much, too much!  I started second guessing myself.  After all, I was 33 years old and healthy.  I wasn't sick.  I didn't feel sick.  I didn't look sick...I was just seeing funny things in my vision.  But my inner voice said make the appointment just to make sure.

        My tumor as seen in July 2005.
        Note the "button" cluster
        So I went.  This time, it was a thorough exam with ultrasound, scans of my retina, pictures of the back of my eye and he shared them with me...every one of those pictures.  I saw it. It shocked me.  But I still didn't know what it was.  nor would the doctor tell me other than to say "it is a growth" but wanted to have it confirmed with a more specialized eye doctor.  I watched the doctor's demeanor change from casual to serious and focused within our visit.  I knew my gut was right.  Something was wrong.  But I still didn't have a name of what it was. So I went out to the receptionist who was setting up the follow up appointment with this specialist in NYC.  This was when my reality changed in an instant.

        The receptionist was this kind, older woman who, while on the phone with the doctor's office in Manhattan, stated to me "This doctor is an amazing oncologist and has a great website all about melanoma."  Wait...melanoma?  MELANOMA??? It took every ounce of my being to not go into a full on panic.  You see, I never met my Uncle Tommy because died from melanoma before I was born.  Melanoma kills.  Cancer has killed every member of my father's immediate family. Breathe Dove...BREATHE. Don't throw up.  Breath long enough to make it to the car.

        My tumor July 2005.
        Note how much blood flow there is to  it.
        It was rich and healthy!
        And that I did.  I made it to the car and then the panic set in.  Full tunnel vision, body shaking, I CAN'T BREATHE!! kind of panic.  I think I sat in the parking lot for at least 15 minutes before my head was in a place where I felt I was safe to drive. And since I was alone, I had no one to talk to. I certainly was not going to call my father...I didn't hear the doctor actually say melanoma so I was not going to set that same panic in him.  I couldn't tell my children, I didn't know what this growth was so in all honesty, there WAS NOTHING to tell. So...I kept the news to myself.  I had a week until I was the meet with the oncologist so it was my time to research.  I can handle a week. In a week, I would have a better idea what to explain to everyone so until then...life was to proceeds as scheduled.

        What I wasn't aware of was HOW FANTASTIC Dr. Finger's Eye Cancer Network website was.  It was FULL of great information but so much so that I was moving almost minute by minute- through WAVES of powerful emotions.  Every page led me through "do I have that?"  "Wait, maybe I have that". It finally came to a rest when I came across the information for Choroidal Melanoma. My scans and pictures of my tumor matched not only the photos he provided on his website but the information looked identical to what I already knew about my "growth"  I finally found it...It had a name.

        Most people who are diagnosed with Choroidal Melanoma NEVER have a sign or symptom.  Most are also older. Most are light eyed, caucasian women.  I had signs.  I fit the profile of the caucasian woman with light blue eyes and worst yet, I had a family history of melanoma. I wasn't the average age but I still fit the profile.  And I know I was a pool rat as a kid and never wore sunscreen as a child.  I LOVED the pool~ it is where I spent every summer afternoon of my youth.  I clearly remembered swimming so long some days my eyes would burn from too much sun and chlorine.   

        And with this name came LOTS of information about tumor sizes, treatment options and cancer stories.  This was the week my children were with their dad so I had little distractions pulling me away from the computer.  My mixed blessing.  I equipped myself with knowledge but also scared myself sleepless. 

        Dr. Finger's office called me only days after my visit with the retinologist to inform me that they had an opening and might I be interested in coming in earlier than scheduled? YES!  Within 24 hours I was on a train heading to Manhattan.  My head was spinning with thoughts.  I knew the retinologist had forwarded all of my scans and pictures to Dr. Finger so the fact that he called me to get me in his office early confirmed in my mind that this was serious.  So, here I found myself in late July opening a door to a new chapter in my life.

        "Cancer. The word meant the same to me as tsunami or piranha. I had never seen them; I wasn't even quite sure what they were, but I knew they were bad and I knew in many cases they were deadly.”
        Natalie Palmer, Second Kiss

        Dr. Finger's office wasn't this massive cancer center in the middle of a huge Manhattan hospital as I suspected it would be.  It is this quaint private office on the 5th floor of medical building in midtown plopped right between famous Park Avenue and Lexington Ave.  It is literally smaller than the first floor of my beautiful Victorian home.  How can that be?  This man was a world renowned ocular oncologist who has published hundreds of research articles, head huge ocular research teams and now was on the brink of changing my life...and I was humbled at how simple he approached his practice.
        One of my exams with Dr. Finger

        So, I opened the door to my new life.  My new existence and my new direction.  Within the 2 hour visit, Dr. Finger's team retook all my photos, scans and ultrasounds.  He sat with me explaining in full detail what we were looking at and how he had come about with the diagnosis of Choroidal Melanoma.  I saw a growth that looked like a small creamy colored brain with a section that broke through the membrane and he explained to me that what I was looking at was a medium sized tumor with the classic "collar-button".  He went on to explain my potential options, options I already was well versed and understood through my research but it was then that he threw me a curve ball that even my best laid plans was not prepared for.

        I knew my options.  I knew if my tumor was classified as a large tumor, it had a high percentage of having metastasized and that was serious.  It would travel to my liver and my lungs and it would be resistant to chemotherapy.  I knew that was a death sentence and my cancer was terminal.  I knew most people who were diagnosed with a metastasized choroidal melanoma were given about a year to live.  How BLESSED I was that my tumor was a medium sized tumor but also recognized how dangerously close I was to the large tumor size.  I also knew at this point that my tumor was still growing and I did not have time to waste.

        I knew some of my treatment options for a medium sized tumor, including one of the best treatments of a plaque therapy., Palladium-103 Plaque Radiation Therapy was pioneered by Dr. Finger, researched and well published as being an eye sparing option. I knew Dr. Finger had been the lead oncologist/ investigator in the Collaborative Ocular Melanoma Study Group which studied Choroidal Melanoma tumors and developed the best treatment. http://www.jhu.edu/wctb/coms/

        I knew this was what I needed.  What I didn't know was that because of the location of my tumor, it was not an option.  WHAT? That is what he said, "I am sorry Dove, but because your tumor wraps around your optic nerve, we can not treat it with a plaque therapy.  You are left with the other 2 options of treatment.  We can do a proton radiation treatment but you will have a very sick eye.  Since we have to send the proton beam through the front of your eye to treat a tumor that sits in the back, everything the proton beam touches in its path will be damaged. You will most likely develop glaucoma, dry eye syndrome and might very well need to have your eye removed after a couple of years.  You only have one other option which is enuleation (removal of the eye) and obtain a prosthetic eye."

        I was listening but I wasn't at the same time.  I only had one plan.  Plaque therapy. I didn't have a backup plan. I couldn't afford a backup plan.  I had 4 four beautiful children to go home to.  I had a career I was starting.  I had a future I was looking forward to.  I had a growing tumor in my head that might very well kill me if I made the wrong choice.  I was backed into a corner.  So I asked for a couple of days to reevaluate things.  Dr. Finger was gracious enough to allow me this time and to call him in the next couple of days with my decision. In the meantime, I had appointments for PET/CT for further scans to rule out metastasis.  And with a hand shake and "Good luck", I was out his door.

        I walked in silence a couple of blocks.  I needed to process what had transpired over a couple hour time period.  Cancer.  It was confirmed...CANCER.  I have cancer.  Not only do I have cancer, I have a rare cancer.  I have a rare cancer that might kill me. But I wasn't going to let it.

        So the next step was to make all my phone calls.  I called my dad. As all dads are, he wanted to know how we were going to go about fixing this.  My dad lost his sight when he was 30, the result of a terrible car accident when I was seven.  Ironically, I was raised by by a blind single father so I knew the reality I was facing should my treatment  resulted in blindness.  Of course, should I live which I was going to do, I would not have total blindness but it would be handicapping, nonetheless.  I knew how my dad struggled with everyday life skills sighted people take for granted. For 25 years, I watched my father navigate the sighted world and watched in amazement and wonder as he learned how to use the phone, pick up prescriptions from the drug store, pay his bills, fix a toilet and even run a sheep and chicken farm.  He was my hero and I knew, no matter what my decision, I had NOTHING to complain about in comparison to him.  He didn't have treatment options for his blindness...I at least had a shot! 

        I also had to explain things to my children and my ex husband and his wife.  My youngest child was six at the time and my oldest was 12.  Cancer was a concept that they had very little exposure or experience with.  After all, I didn't look sick nor had I been sick.  They couldn't see anything that would alert them that I had a battle of cells going on inside of my body.  My ex husband and his wife knew otherwise.  They also wanted answers as far as what were my options and what was I going to do.  I didn't have those answers yet. I was still trying to process that I had cancer and we didn't yet know if it was any place else in my body.  I only knew I didn't know anything yet.

        So, I returned home and tried my best to take my mind off one of the most difficult decisions I had ever needed to make in my life.  I needed time to mourn my loss of control in this decision making process and wrap my thoughts around what I needed to do over the next couple of days and weeks as I inevitably faced surgeries and recovery times.  I had a battery of insurance companies to contact, phone calls to family and friends to make, plans to how the children were going to be cared for while I was in the hospital, who was going to take care of the house and pets, fill in the mountain of paperwork for medical leave from my job and graduate school and maintain sanity enough to not break down in tears every second of these overwhelming and seemingly insurmountable tasks ahead of me.  I was one person. One person with cancer. One person who had no answers and ever hour that passed was filling up with fear of the path I was now placed on I was not prepared for.  Last week, I was enjoying my children during our summer breaks from school and now I was thrown into this world I didn't know how to function in.

        The fog that had filled my head was overpowering at times.  Yoga did wonders to relax my tense muscles but sleep was not my friend as my dreams were starting to be filled with nightmares of my worst fears manifesting themselves in images as real as breathing.  But there came light in the form of a phone call from Dr. Finger.

        He personally called me as he wanted to discuss an idea.  He shared with me that he could not stop thinking about my case and thought there must be some way that I could be treated successfully.  He thought he could custom design plaque with a slot that would fit around my optic nerve and align the radioactive Palladium-103 seeds so as to reach all parts of the tumor, even the parts wrapped around my optic nerve. My heart started beating a mile a minute.  Was he saying what I thought he was saying???  Was he actually telling me that my treatment options had changed.  Before he could even explain everything, I stopped him, shouting "Yes...YES!! Dr. Finger, I will do the surgery!" Before accepting my answer though, he wanted to be sure to explain all the risks involved.  He had never created such a plaque before and this surgery had never been performed before but he was confident it would successfully radiate the tumor.  Having said that, if he was off on his calculations, the radiation did have significant risks.  For example, if the radiation was too strong, it could burn a hole through my eye.  If it wasn't strong enough, it would not properly kill the tumor and I was at risk of the cancer spreading. Either option might end up with the removal of my eye.  He also was treating my tumor and was not confident it would save my vision.  In fact, he was fairly certain I would be blind in my left eye within the year.  I was willing to face all the risks involved.  I didn't care this was an experimental surgery.  It never phased me that I was going to one day be a part of medical history or have my story in medical journals, on tv or in a book.  All I knew was that he was willing to take a chance and I was worthy of it!  I am firm believer of following my gut instinct and my gut said "Move forward...this is what you were meant to do!"

        So with that focus, we moved forward. Within 24 hours, I was back in Manhattan obtaining a PET/CT, meeting with the team of oncologists, radiologists, anesthesiologist, nurses and hospital staff for pre-op check up and paperwork.  I was ready to go. I was nervous but I was also feeling I was on the edge of something important and I knew this was what I was meant to do.  Soon enough, I was through my first surgery and sent home for a week.  I had to wear a lead patch over my left eye and was told to stay away from people, especially young children and elderly, as much as I could.  That was no problem~ hibernating for a week was good for me. 

        My personal strength was tested this week home.  Every four hours, I had to put in a steady stream of eye drops and was on a significant amount of pain medication.  This was a lot for the girl who didn't even like to take Tylenol for a headache.  To begin my week, I was able to sleep alot and allow my body to rest through painful moments but as my body started wearing down tolerance to the pain, I was left sick to my stomach from the heavy doses of medications, constant double vision, loss of depth perception and the physical exhaustion stemming from trying to stay emotionally strong.  A week later, I was back in Manhattan for my second surgery and within hours of the surgery, I was sleeping off the effects of anesthesia. I was blessed.  I was truly blessed.  I was alive and  I was now officially in recovery having been through 2 surgeries in 1 week.  Yes, 2 in 1 week. 

        My tumor after treatment- 2 year mark
        A couple days later, the friend who had never left my side through my diagnosis, surgeries, doctor's visits looked at me and said "Let's get away, let's go to Maine" And that we did.  I needed to not only let my body take a break to heal but I needed to allow my mind to rest.  So we packed up and headed north.  Little did I know how brilliantly wise my friend was.  I needed to be in a place where I was surrounded by some of God's most beautiful master pieces to help me reevaluate my life's priorities.  I was still a single mom.  I was still a graduate student.  I still was seemingly healthy woman.  I had a terribly sore red eye and looked like I had lost a round with a heavy weight boxer but I was still able to love and laugh.  I was still able to make plans and set goals.  Cancer will be something I experienced but it was not going to be what defined me.  I realized this while hike along the Appalachian  trail section called Saddleback Mountain.  While sitting way above the timberline eating lunch, my friend pointed out that only days before I was involved head strong in a custom radiation treatment to kick cancer and today, I was sitting at a elevation over 4,000ft in some of God's most beautiful country.  There was nothing I wasn't capable of and this proved it.  I did it.  And I had everything to be proud, even if I was exhausted.

        7 years later, I still am a patient of Dr. Finger's.  I joke with him that he is the longest relationship I have ever been in but the truth is, we have more than a a patient doctor relationship.  We are each other's best cheerleader.  Within a year of my surgeries, he published the results of my radiation treatment and that of several others. Published research 1st article  Yes, the photos you see and the 33 year old woman is ME!

        An interview of Dr. Finger and I plus video

          At the 5 year mark, he published another follow up research article, this time having performed the surgery on more than 25 patients.
        Published article 5 year mark  He now carries the patent for the "Finger's Slotted Plague".  I have been with him through a small phase one, clinical drug trial that lasted a year. I continue to be in his office once a month and receive excellent follow up care. 

        Some of MANY new reports published with Dr. Finger and I

        http://www.wndu.com/mmm/headlines/43370517.html

        Since my cancer diagnosis, I graduated from graduate school and am now a middle school teacher.  I am the voice of many with Choroidal Melanoma and I  have made a difference.  It has become important to me to continue being part of that difference.  

        I am not yet in the clear.  My cancer may still spread. It may still kill me.  I count my blessings it hasn't done so and I religiously get scans and meet with Dr. Finger monthly.  So, although the risk of metastasis is now quite low, I am keenly aware that not everyone is so lucky.


        Go TEAM Hole in the Wall
        Now my focus has shifted from me and my cancer to others and their medical stories.  Children battling serious illness and their family members often feel isolated and alone in their struggle and miss out on the opportunity to experience the fun, friendship and spirit of childhood. As someone who values the importance of belonging and community, I think this is unfair. So I run 13.1 miles every April to help The Hole in the Wall Gang Camp provide “a different kind of healing” to more than 20,000 children and their family members every year throughout the Northeast, completely free of charge. Each year, 2,500 are served onsite and 19,000 visits by the Hospital Outreach Program bring the fun and friendship of Camp into more than 20 sites throughout the Northeast – all free of charge. If I help just one child, I have made a difference.

          Donate today! Click here for my fundraising page where you can videos about camp and make your donation!