backstagefour

Race Day

Team Backstagefour

Some days I truly feel “normal” and forget I have cancer.  However, during the 5k colon cancer awareness run in Richmond, I didn’t forget and I didn’t feel “normal”.  I felt overwhelmed with joy and happiness and proud of all of my friends who were there to support me.  It was a rainy morning on race day, yet everyone wore smiles and had a good time.  Team Backstagefour had a strong turnout, over 50 people if you include all the little feet.  It was fun catching up with folks I haven’t seen since college and reliving stories from the past.  I’m truly blessed to have such amazing friends.  I want to thank Matt Leslie for all of his help coordinating the team and the after-party.  I also want to say thanks to my brother Tim and the rest of Team Kevin who ran a 5k in Rhode Island that same weekend.  You guys are awesome and I feel the love and support.

Rhode Island Team Kevin

Richmond 5k after-party

hanging out with friends

The week after the race, I met with my colorectal surgeon to discuss radiation and surgery.  He told me some surprising news…the original tumor, or primary mass, is no longer there.  He went on to say that I do not need radiation because there is nothing to radiate.  What wonderful news!  There was no medical explanation other than I had a great reaction to chemo (I guess drinking Holy Water doesn’t hurt either).  This outcome could change how my surgeries are to be planned.  The standard protocol would be to first remove the primary mass then remove where it had spread.  However, the order may switch depending on what the lung surgeon thinks.

As I have learned, cancer is unpredictable.  I was unable to receive chemo on my scheduled week because my white blood cell count was too low (2K) and treatment had to be pushed back a week.  I was hoping my white blood cell count would increase through the week.  It did not, so I was given a shot that would boost my count so I could receive treatment the following day.  So ten rounds of chemo down, two more to go.

Tomorrow I meet with a geneticist to learn if I have a gene mutation that caused my cancer.  Then this Friday I meet with a lung surgeon and will learn when and how he will preform the surgery.  On Monday, July 8th, I have a shorter colonoscopy to mark the scars where my tumor was so they will know what area to remove.  I finally feel like I am making progress and getting answers to the questions I have had for the past six months.

Thank you all for the prayers, positive vibes, and kind deeds.

My Rock

Imagine your spouse being diagnosed with stage IV cancer and told he or she probably wouldn’t beat it.  Now imagine having a four-month-old baby and a         four-year-old child.  What would consume your thoughts?  Fear?  Worry?  Doubt?  This was Janie’s reality.  No matter how difficult, Janie’s thoughts and actions have been based on hope, love, and strength.  I figured mother’s day would be an appropriate time to write about Janie, an amazing wife, mother, and my rock.

If you know me, you know that I deal with difficulties using humor.  Janie’s approach is to take everything head on.  It shouldn’t surprise me that she has been so strong throughout this, but everyday I’m awestruck by her ability to compartmentalize and accomplish so many things.  After each medical appointment that leaves my head spinning, she has already processed what was said and knows what needs to be done to better the situation.  She continues to go to work where she has been excelling and then returns home and transitions right into mom and wife mode.  Janie is also my lead researcher and you can find her reading about cancer and cooking healthy recipes every night.  When I come home from work, many nights she’ll have a dark green liquid from juiced vegetables waiting for me (of which I’m not a fan but know it’s important).  While juggling being a mom and not having as much help from me because I require more rest these days, she continues to stay motivated, strong, and loving.

On our honeymoon, I would tease her each morning by saying “forever”.  Meaning that she’s going to be stuck with me forever.  I couldn’t imagine what was in store for us.  I now know that no matter what happens in life, I will be with her forever and her with me.  I could write a novel about how much Janie means to me but the only words I need to say are…I love you…forever.

our wedding day

My Patriots’ Day

For several years my cousin has been trying to get me to go to the Red Sox game on Patriots’ Day.  Each year I would say no because of work.  Since my diagnosis, I realize that spending time with family and friends is important.  I feel a sense of urgency to spend time with them because I don’t know how many times I have left.  Plus, it didn’t hurt that the Boston Red Sox were playing my favorite team, the Tampa Bay Rays.  In Boston, Patriots’ Day is a state holiday and the city is filled with people that watch the marathon, attend the baseball game and just party.  I drove up to Boston with my brother and sister-in-law.  We decided to drive into the city instead of taking the “T”, the subway line, because using public transportation exposes me to more germs.

my view of the game

The day was beautiful and sunny.  I thought the Rays were going to pull out a late win until the Red Sox won on a walk-off.  I could feel the spectators’ excitement and joy upon leaving the stadium.  After the game, my cousin and his friends celebrated the win at a bar.  Tim, Andrea and I went to watch the race.  Our plan was to watch the marathon, make our way to the finish line, then take a cab back to our car.  We were just past the mile 25 mark when we stopped to get drinks at 7-Eleven.  A spot along the route opened up and we were able to squeeze in to watch the runners.  I’ve never been to a marathon and I thought it would be boring to watch people run, especially without knowing them.  The race was surprisingly inspirational.  Many of the runners had their own names written on their shirts or arms.  We cheered them on as they ran.  I noticed several people running for cancer.  I recall seeing a man named Matt whose shirt said “I Beat Cancer”.  In that moment I wanted to be Matt.  It was beautiful and inspiring to see a person beat cancer and run a marathon.  I pictured myself running a marathon and wearing that shirt.  Running a marathon is an amazing accomplishment.  After seeing Matt go by, I became emotional and began cheering on every runner.  At mile 25 I saw the toll the marathon had taken on their bodies and how cheering them on helped.  Another runner stood out, a mother running and pushing her daughter in a jogging wheelchair.  The daughter was disabled and they were running for the Boston Children’s Hospital.

my view of the marathon

As we finished our drinks, we began walking to the finish line to catch a cab.  We were five blocks from the finish line when the bombs went off.  To me, it sounded like a car backfired.  I didn’t think it was a bomb.  Three girls came towards us crying and holding each other.  They told us there had been a bombing.  Immediately we heard sirens echoing throughout the city.  The sound of sirens continued for hours.

As we walked around the city, we didn’t know how horrific the bombings were.  We heard reports that 12 people were hurt but information was difficult to come by.  No one was able tell us what was going on.  I saw many runners, families and tourists walking around aimlessly not knowing where to go or what to do.  Despite the constant sound of sirens, the city was not in chaos.  The city streets seemed eerily calm.  People weren’t running around frightened.  I look back at that moment and see the city as a city in shock.

We safely made it to our car and learned about how horrendous the incident truly was.  We started thinking of the “what ifs”…what if we didn’t go to 7-Eleven and wait in line for five minutes to buy a drink?  What if we didn’t stay and watch the race for 20 minutes at the 25.5 mile mark?  What if we decided to go to the party at the finish line?  We had invitations to a party at a building in front of where the first bomb went off.  Life is full of “what if” scenarios and I’m very fortunate and grateful that it was just a “what if” scenario for me.  My heart and prayers go out to all of those affected by this senseless act.  I pray for strength and healing for the victims, their families, and the city of Boston.

I’ve learned to appreciate experiences in the moment and not take things for granted.  I can’t guarantee these moments will happen again.  I am never “going through the motions” when I give my wife and kids a hug and kiss.  Instead, I hold onto and cherish those moments.

*The woman and daughter I refer to in this post can be seen in the news video of the race at the site of the first bomb.  They can be seen running on the left side of the screen, almost parallel to the 78 year old man.  It’s surreal to think that I was cheering for them 15 minutes prior.

Rocky vs. Drago

After my diagnosis I would Google cancer and kept encountering the word “fight” over and over again.  When I was told I had cancer, I wanted to “fight” from the start but was not ready.  How do you fight something you don’t see or feel?  I first needed to grieve my life as I knew it.  On some mornings I would wake from a dream feeling normal, then my new reality would overcome me and I would experience physical pain.  The pain wasn’t from my cancer, but from an overwhelming sadness.  Then the sadness led to anger.  Anger led to understanding.  Cancer took away my normalcy.  Through my pain, sadness, and anger I learned what to fight for.  I’m fighting to get my life back, and one that’s even better than before.  I’m fighting to be a better husband, father, son, brother and friend.

I saw myself as an underdog in a fight and began to think of an alter ego to channel for inspiration.  Then it hit me…Rocky Balboa, specifically Rocky IV Rocky Balboa.  I remember in second grade going to the movie theater with my neighbor Geoff and his dad.  I sat down in my seat with Whoppers and a Coke.  I thought the movie was awesome.  C’mon you gotta love the scenes with James Brown singing “Living in America” and with Rocky training in the mountains.  Ivan Drago was physically bigger and had all the latest advances in technology and medicine to help him defeat Rocky.  Rocky had the support of his friends and family and a strong will.  My friend Matt began sending me quotes from Rocky IV like this one:

“You’re gonna have to go through hell, worse than any nightmare you’ve ever dreamed.  But when it’s over, I know you’ll be the one standing. You know what you have to do.  Do it.”

And this one:

“So what we’ll be calling on is good ole’ fashion blunt force trauma. Horsepower.  Heavy-duty, cast-iron, pile driving punches that will have to hurt so much they’ll rattle his ancestors.  Every time you hit him with a shot, its gotta feel like he tried kissing the express train.  Yeah!  Let’s start building some hurtin’ bombs!”

Who knew dialogue from Rocky IV was so inspirational?  I gave Matt the nickname Duke after Rocky’s trainer.  Of course Rocky got knocked around pretty good and the numbers predicted that outcome.  But in the end, Rocky was the last one standing…and I will be too.

While I was in the hospital, a priest came into my room.  The priest introduced himself as Father Roque (pronounced Rocky).  I instantly began laughing and crying.  He had a confused expression on his face and I explained how Rocky was my inspiration.  We talked and prayed together.  Once he left, Janie joined me and I told her and we laughed and talked about how we are witnessing so many blessings and positive signs.  To this day I still keep in touch with Father Roque.

A Sunny Day in Baltimore

Last time I met with this oncologist she explained that my cancerous nodules, or tumors, could possibly be like snowflakes in a blizzard and that we wouldn’t know if I had a cancer blizzard going on inside me until my two-month scan.  That scan was today.

The hardest part of a scan is lying in bed the night before with racing thoughts about the next day.  All week I was feeling positive about the scan but last night I began having thoughts like…is my life going to be turned upside down again…is the chemo working.  All of those thoughts were questioning things outside of my control.  That is the most frustrating thing about all of this…I have no control.  What I can control are my thoughts, behaviors/actions, and feelings…and right now I’m feeling pretty good.

I learned the tumors are shrinking.  The three in my right lung have shrunk by roughly 25% and the one in my left lung was not detectable by the CT scan.  This is excellent news, but I’m far from being out of the woods.  I still don’t know if I’m able to have surgery to remove the nodules in my lungs because they are spread throughout and not clustered together.  And even though the nodule in my left lung was not detected, the area where it originally was would still need to be surgically removed.  So it comes down to the question of how much…how much of my lungs could be removed and still be able to function.  If I can’t have surgery on my lungs then I will be on chemo for the rest of my life.  But today is a good day.

My family and I are so grateful to all of you for your constant prayers and positive thoughts.  They make each day easier.

my doctor and I after the good news

Good Memories, Better Friends

my medical entourage

The best pain to experience is chest pain from laughing so hard that you can’t catch your breath. I recently spent a weekend with old friends reminiscing about the past and laughing. I think retelling stories with friends is better than the actual event itself. It seems the stories become funnier over time no matter how many retellings. After spending time with my friends, Gerrit Benson, Joe Young, and Matt Leslie, and reliving stories of our past, I appreciate the memories more than the moments. Most of the stories weren’t shining moments of my life (my daughter Katie needed to cover her ears most of the weekend), however, they were definitely memorable and definitely funny. One of the best things about spending the weekend with them is seeing that they have not changed since junior high. Gerrit is Gerrit, Joe is Joe, and Matt is Matt. With my life ever changing, I love it that they are constant and dependable. I rely on my friends being who they are because that’s what made us friends in the first place. Tough times aren’t so tough when they’re around.

After the colonoscopy- Part II

After the CT scan, the doctor came in and told me he had the results.  I told him I wanted to wait until Janie was with me as she was getting things from the house for our stay in the hospital.  In my profession as a therapist, I read a person’s facial expression to gain insight into their thoughts.  Many times, the eyes and face say more than words.  In the moment when I read his expression, I was optimistic that the cancer had not spread.  Soon Janie returned and the doctor came in to give the results.  He pulled up a chair and sat down beside my bed.   You don’t pull up a chair for good news, you stand, you smile and you give a strong handshake.  He pulled up a chair and told me it had spread to my lungs.  I have four nodules in my right lung and one in my left lung.  I have stage IV cancer.  I will never try to interpret a doctor’s mannerisms again.

The first morning of my hospital stay, a surgeon came in to talk to me about colon cancer.  Upon entering, he saw me holding rosary beads, prayer books, and relics and told me a story about a former patient of his.

The patient had complete blockage in his colon and an inoperable tumor on a vital organ.  The patient was terminal.  Eventually, at a routine medical appointment, a test result showed the blockage was gone and the tumor had shrunk.  The doctor inquired about what happened and the patient told him that he drank a shot of holy water with his pills every morning.

The doctor is Jewish and joked that he considered converting after witnessing this event.  I now drink a shot of holy water every morning with my pill too.

Meeting the surgeon was uplifting.  He told me about the importance of positive thinking and the power of faith.  He explained the possibility of surgery to remove the cancerous tumors in my lungs and the mass in my colon.  After his visit I was positive, smiling, and sure I was going to beat this thing.

Now bring on the oncologist.  I was very eager to meet with him.  He was looking over my chart as he entered the room.  I gave him a big warm smile and asked, “Can I beat this?”

“It’s possible, but not probable,” he replied.

Instantly all my positivity vanished.  I was crushed.  Did I just hear that?  I immediately thought of my children and was devastated.  This was my lowest moment.  I wanted the doctor to tell me  “stay positive” and “you’re going to beat this”.  I now understand why the oncologist didn’t tell me what I wanted to hear.  Based on the numbers, that is the outcome.  But I’m not a number on a piece of paper, I have a soul and I know I’m going to be here for my children.

The oncologist explained his recommendation for treatment.  I learned the chemotherapy options for me are the same as an 80-year-old person with colon cancer.  The chemo is given based on height and weight and doesn’t incorporate age.  My understanding is this, even though I’m young, giving me more chemo doesn’t kill more cancer, it just makes me sick.  Aggressive treatment, in my situation, means I can withstand a surgery on multiple organs.  Being young and having cancer isn’t as advantageous as I initially believed.  After the oncologist left, Janie looked at me and said, “You’re going to beat this.”  And we prayed.  I know with God, love and the support of family and friends…anything is possible.

*Note on the mentioned oncologist: I currently see the same oncologist.  He is a kind, warm man and has helped me greatly. 

After the colonoscopy

After the colonoscopy, I needed a CT scan immediately and was given the run-around from my insurer.  They said approval for the scan would take five business days because they needed the results from the biopsy determining it was cancer.  This was frustrating because the GI doctor was 99% sure that it was cancerous.  I made an appointment and waited.  The waiting was difficult as my mind was racing with every possible scenario.  A couple of days later, while grocery shopping with my wife and dad, I began to experience chest pains.  I tried to blow it off thinking it was nothing, but decided to address it and went to the emergency room.  At the hospital, I was given an ECG, a chest x-ray, an ultrasound, and they did blood work.  Ironically, everything came back normal.  I went ahead and explained the results of my colonoscopy and that I needed a scan to determine the extent of the cancer.  Within minutes, they set up a CT scan for me.  I went into the CT scan holding rosary beads, relics, and prayer books in my hands.  As the scanner had me “take deep breaths” and “hold it” and “breathe”…I prayed that the cancer had not spread.

Discovery of Cancer

Tuesday, January 22, 2013

While lying in the outpatient hospital bed waiting for my colonoscopy, I was wondering with Janie about which informational brochure they’d give me after the procedure.  Which diagnosed group would I join?  Would it be Irritable Bowel Syndrome, Celiac Disease, Crohn’s Disease, dairy intolerance?  I joked with the anesthesiologist that I hoped it would be quick and painless.  While being prepped for the procedure, I remember the doctor wanted to listen to music and settled on Paul Simon.  I remember thinking, a little easy listening and a smooth colonoscopy.  Those were my last thoughts before being diagnosed with cancer.  I didn’t know my life was about to change and that there would be no brochure for me.

After the procedure, I was groggy and realized immediately from the doctor’s facial expression that something was wrong.  I remembered him saying, “You have a cancerous mass.  I removed numerous polyps…so many that I stopped counting.”  Still groggy and instantly overwhelmed, my brain tried to think but couldn’t.  I looked at my wife but couldn’t talk.  I was frozen.  A nurse stayed with us and repeated everything the doctor said to try and help us with the burden of bad news.  The doctor returned after taking care of another patient to talk with us again.  This time I was alert and could process more of what he said.  He showed me pictures taken of the mass during the colonoscopy and told me that in the future, my colon would probably need to be removed, but first I needed a CT scan to determine if the cancer had spread.

I went home and spent the rest of the day on Google searching everything about colon cancer and all the stages. I compared my mass to other images and tried to guess the stage of cancer.  I went to chat rooms with colon cancer survivors looking for any helpful information.  At the end of the day I was anxious and frustrated from what I had read.  That experience has led to the creation of this blog where hope, inspiration and positivity are the things I want to share with others.

Blog Beginnings

I am beginning this blog to keep everyone updated of my progress, as well as to educate others about cancer.  The blog will also share how I am staying positive through my spirituality and with the love and support of my family and friends.