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!





5 comments:

  1. Hi Dove,
    I was the 3rd person, Dr. Finger treated with the "slotted plaque". Nice to hear your story and that you are doing well. There is a group in the NYC tri-state area of people with eye cancer. If you're interested, we usually get together twice a year for a luncheon. You can e-mail me at:eyecancerny@gmail.com.

    Best,

    Anne Marie

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  2. Thanks Anne Maria..I had actually attempted to contact you earlier this year regarding this! I am already in contact with a couple people in the upstate capital district area and we are still trying to coordinate our schedules for a luncheon but soon!

    How are YOU doing in regards to your care??

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  3. Hi Dove,

    Didn't realize you tried to contact me. I'm doing OK. I sent you a message on FB.

    Best,

    Anne Marie

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  4. Hi Dove,

    I saw a brief intro to your story on a recent MRF email, and just had a chance to read your blog. I wanted to say hello. I wasn't too far out from finishing graduate school and was 32 years old when I was diagnosed with OM on September 10, 2010.

    Sounds like you've got a great spirit and have dealt with this sort of crappy situation in much the same way that my wife and I have. If you're interested, feel free to read our story at bigtroubleinlittleeyeball.blogspot.com. I haven't updated it in a very long time, but I may get back to doing some at some point soon.

    I wish you the best and will be sure to check in on your blog periodically!
    Jeremy

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  5. Hi Dove,

    Thank you so much for sharing your story. I was diagnosed with an OM only 2 weeks ago and today was my worst of worst days, had felt so strong until then. As a single mum, with 2 young kids, it is incredibly reassuring to me to hear a real person's actual experience, with some similaritites to my own.

    Sending you gratitude all the way from Australia,

    Lucy

    ReplyDelete