Brian Thomas (Stage IV Melanoma)

brian thomasMy name is Brian Thomas.  I am an award winning teacher.  I am a happily married and have an adorable little angel for a daughter (age 4).  I am a thirty five year old man but I am not average.  I ran from Michigan to Florida in 2001 to raise funds and awareness for a private school for children with Cerebral Palsy.  I mentored two young men over a four year period and then ran with them from Florida to Michigan to raise funds and awareness for the Colon Cancer Alliance in 2012.  I am a real life superhuman and this is my story.

 

When I was finished running from Florida to Michigan I was not recovering like I did the first time.  I was always tired and could not stay focused nor could I sleep.  I went in to my general practitioner several times and had many standard tests run.  I was told that I was healthy as a horse!

During spring break of 2013 I was down in the keys with my family enjoying some much deserved rest and relaxation, but I was not rested or relaxed.  I was fatigued all the time.  I was nauseated when smelling and/or eating foods I had eaten my whole life.  I was gassy, bloated, and experienced acid reflux all day long.  I would hardly eat at meals.  When I ate my favorite dish a wonderful place called the hideaway, I through the whole meal up.  Granted it was just as good the second time but this was absurd!

We went home from the trip in the keys and my symptoms were getting worse.  I now had a general throbbing pain in my abdominal area.  I told my wife if it got any worse I would need to go to the ER.  Two days later, march 25th, I was in the ER with intense throbbing pain.  After running tests and getting an endoscopy, the news was sound.  I had a tumor in my abdomen that had fingered out to different organs in the area.  [I needed emergency surgery, now!]

After an ominous interaction with the potential surgeon at Wellington Regional, I decided to get a second opinion.  I will never forget the comment, “I suggest the Cadillac of the Whipple surgery”.  DO I LOOK LIKE A CAR!

April 15th I was admitted to Jackson Memorial Hospital in Miami.  My Surgeon Dr. Danny Sleeman, and his young team were amazing both in the actual surgery and their bedside manner for the duration of the three week stay at the hospital.  I was told that all my margins were clear of any cancerous cells.  My scans came back clear from head to toe!!

I spent the next several weeks healing.  Most of the time was spent learning how to do simple tasks like cook breakfast, learn how to poop and pee again, bathe in the shower, and walk around.  My family spent spent their time taking care of me and watching over me.  I learned that my wife is a rock.  And my daughter provoked me with daily questions like, “are you ALL healed yet? Can we play? Can we go on an adventure?”

I was told by my oncologist that I should go out to get different opinions on therapies.  We made lots of calls but scheduling was backed up for months in some of these places and I knew that timing was critical.  I also thought I could heal using only alternative medicine that was not toxic to my system.

I flew up to New York to visit with Dr. Nicholas Gonzalez.  While his enzyme therapy personal protocol makes logical and scientific sense and may have worked on others, it did not work with me.  I followed the personally designed protocol to a tee.  I did not waiver one bit and was getting very comfortable on my regimen.  I went in for scans two months later and there were new tumors!  The cancer had metastasized to my liver.  There were three metabolically active tumors.  One tumor was about twelve centimeters at its longest point.  This is just short of the tumor that was resected in April.

At this time I started to have interesting symptoms like daily fevers, extreme fatigue, chills, dull liver pains, and aches.  These were all, coincidentally, symptoms that were expressed with the “enzyme therapy Protocol”.  But I went from clear margins to a huge tumor in my liver and two smaller tumors snuggled in with it!  The Enzyme therapy was not working even though Dr. Isaacs and Gonzalez insisted I continue on.  Oh, but it was ok to compliment with traditional chemo therapy if I thought it helped.

My wife and I frantically called everybody.  My oncologist was out of ideas due to the cancer being so aggressive.  I felt my life slipping away both on the “Right To Fight” level and from a physiological level.  I knew I did not have much time.  My oncologist suggested calling Moffitt Cancer Center in Tampa.  We called made the appointment for a number of weeks later and then picked up the phone and made more calls.

The next Olympian of medicine that was buzzed in our ear on many occasions was M.D. Anderson.  We had a connection through friends that got us an appointment within a week and with the Head of oncology at that time.

We bought our tickets and flew out.  We also had to purchase a room and a rental car.  We had connections there too but is everyone that lucky?  I don’t think so!  I am blessed.  All this was a lot of money out of our own pockets.  Money that was supposed to be for my daughter’s future and fixing our home was now spent to save my life.

When we got there the vibe was very bland, generic, robotic.  I met my “Savior” and saw that there ws no passion in his eyes.  I was told by his P.A. that I had many possible options with him and here at MD Anderson, but when my head doctor approached me there was only one option to save my life…HIS RESEARCH!  I felt that cold distance of death around me.  I asked him to show me his research statistics.  He sized me with his cold, dead, passionless eyes.  Paused and I saw him calm himself internally.  He showed me his research findings.  He focused on one number 50% and flipped to that page in his research paper.  My doctor had misread my wife and I as ignorant white trash that could not read a data table, graphs, or understand research level lexile.

I reinterpreted his graphs and research summary for him, outloud.  Lets just say that he was less than impressed with my abilities and these were the head of oncology for M.D. Anderson’s words to me, “if you do not do my research you are going to die!”

I told him I needed to go home and decide my fate.  I will have an answer in twenty four hours.  As I left the room I could feel the hand loose its grip.  And as we left the building the distance between death and I increased.  I could feel it in my soul.

I got in the car and could not hold back tears of frustration.  I mean, I was fighting with the elites of cancer and they are falling short.

“I do not want to die,” I whimpered to my wife as a burst into sobs.  I cried all the way to the Sheraton.  Pulled it together as we walked in and went up the elevator.  Burst into tears and crawled into bed.  I went into fetal position and sobbed until I fell asleep for the night.  I woke up in the night and cried in the other room so I would not wake my wife.  I fell back to sleep.  When I woke up I knew I was different.  I put on my favorite pair of man jeans ($9.99 at Walmart) and my favorite “pirate shirt” on.  I am not going to die!  I am going to live!!

“I am going to live!!!”  I yelled in my room.  Shar came in and I said, “lets pack and go home!  We are going to look somewhere else for a cure.  This is not right.  It does not feel right.”  We left and did not turn back.

We went to the appointment a Moffit.  We drove all the way to Tampa, got the hotel, met up with my best friend A.J. for a night.  Then, the next morning, we got in the car and drove home.  I was done with traditional doctors.

Weeks later and back home my health was declining and I was not sure how this would all end.  I was feverish and sitting on one of those reclining chairs looking for my lizard friend in my big non indigenous tree.  The green in the tree calmed my body and mind.  A good friend of mine came in to the house as Shar, my wife, answered what I was to find out was a very important phone call.  The Burzynski Clinic was calling to tell us if I was qualified to fight for my life or if I was going to meet my maker.

The call was long and Shar went into the other room.  I told my buddy how important the call was and made him sit in silence as we waited for the mutter in the other room to come up with answer.  Tears rolled down my face as I imagined my little girl growing up without her dad, the adventurer.  Shar  Came in the kitchen…

Shar, “[thumbs up] you are in, Brian!”

I dropped to my knees with my hands up, in a V!  I burst into tears of relief for the opportunity to fight for my life!  That is all I needed was a pin hole of light somewhere in a sky spans of darkness.  And there it was the most distant star in the universe had revealed itself to me…I called this star hope, Burzynski Clinic.

My whole family and I purchased tickets with funds raised by friends, coworkers, and family from around the world, my network.  We made arrangements with the Sheraton and paid for two weeks of stay time with them.  We also had to get a rental car for the two weeks.  All of this was paid for out of pocket.  Let’s face it!  It’s not like you can call up health insurance and tell them that you need help paying for this new unplanned vacation.  Nobody saves money for health issues like cancer.

Once we got settled into our new home we headed out to meet the legend!  Once there my vitals were taken and then we all waited in a meeting room.  All the Doctors that would be working on my case would be introduced to me.  That was a personal touch that put my raging feverish mind to rest.  I already had generals in my army to conquer this evil menace to society!

In walked the legend, Dr. Burzyski!  What answers did he have?  He explained that he did not have the anti neoplastins but that he had an answer where others didn’t.  Dr. Burzynski’s team suggested putting me on an “off label” chemotherapy protocol.  “Off label” means that the chemo medications Avastin, Carboplatin, and Abraxane are FDA approved for chemo on different cancers not the cancer I have.  There are instances and studies that show it can work, however, on melanoma.  When your chemo is “off label” your insurance will not cover it unless you fight for them to cover it.

Dr. Burzynski and his team saved my life but not without a price.  For Dr. Burzynski to work outside the box it cost me, an educator, a not so average hard working American,  $30,000.00 out of pocket for the visit and my first infusion of life saving drugs.  Where the leading doctors had no answers, Dr. Burzynski did!

I have come a long way since then.  I feel normal and healthy.  I am excited to say that with the time given to me by GOD and Dr. Burzynski I have been able to get into a cutting edge immunotherapy clinical trial by Incyte.  I have also changed my lifestyle to include massage, diet change, and more vacations.  I would not be able to have that opportunity if I did not have two things:

1. Passionate doctors like Dr. Burzynski that think outside the box.

2. A network of people in my life that thought my life was worth saving.

I want to create that network for others.  I am walking from West Palm Beach, FL to Washington D. C. to raise awareness and funds for patients like me.  I have teamed up with Hugs and Kisses Inc. (www.hugsandkissesinc.org) to raise funds and awareness.  We will be stopping at several locations along the raise to hold “Right To Fight” walks.  People can sign up to walk with us at these events.  At the end I hope to hand a check to some one that is in desperate need of the money.  The walk will start june 7th and end July 21st Summer of 2014!  1 in 300 people will be diagnosed with cancer this year so help that one person by creating a 300 person or more network to support them.  Let’s all let the patients know that they are not alone!  I also want to make it clear that infinitely passionate doctors like Dr. Burzynski, Dr. Green, and Dr. Lutzky are out there and they will find a way to help you!

Articles:

Palm Beach Post (Brian Thomas Article)

Right to Fight Walk (Press Release)