backstagefour

Climb

This week my daughter Katie and I attended a meeting at my local hospital called CLIMB (Children’s Lives Include Moments of Bravery).  The program is designed for children who have a parent or family member with cancer.  The program focuses on emotional support for the child by utilizing a group format.

Prior to my last scan, Janie and I noticed Katie’s behaviors changing surrounding the scan date.  We didn’t realize the change in behaviors were related to my scan.  Once we were able to connect the dots, we were shocked and worried.  We try to act “normal”, but Katie is very observant and can pick up on our stress.  Anabel is four years old and my sickness is all she knows and she’s unaware of the importance of scans.  Anabel believes everyone’s daddy goes to the doctor weekly and takes medicine.  She often tells me, “You put on lotion because of your boo-boos”.   She is aware I have boo-boos but can’t comprehend the severity of cancer.  However, Katie knows.

I am excited about Katie participating in this group, but I also feel guilty and sad.  As a parent, I want to protect her and Anabel from physical and emotional pain.  Seeing her emotionally hurt because she worries about me, crushes me.  I struggle with being the source of the problem.  I want to put them in a protective bubble.  The reality is, Katie and Anabel will have to learn to cope with my diagnosis and Katie is now riding the cancer roller coaster with Janie and me. Trying to look at this situation positively, I know personal growth comes from struggles and my children will learn to deal with adversity at a young age.

In the CLIMB group, I’m the “veteran” cancer patient.  Most of the participants are newly diagnosed and struggling with the reality of having cancer and raising kids.  My children were too young to participate when I was first diagnosed.  Katie, even though she’s the youngest in the group, is a “veteran” herself.  She’s seen me through colon surgery, brain surgery, five lung surgeries, multiple radiation treatments and chemo over the past four years.  Katie was telling me after the group, “most of the parents had only one surgery or none” and when it was her turn she told them about all my surgeries.  It’s funny because she was not acting as a victim, but was proud of all my treatments.  I explained to her that less is better in this circumstance, but honestly, I’m ok with her pride.  We talked about how through her own experiences, she can help others in the group.  So I believe the CLIMB program will be a great match for both of us.

Another example of the beauty of cancer was this past weekend.  My college roommate invited me to go to Dallas for the FCS National Championship football game in which James Madison University was playing.  After graduating from college, my college roommate and I drifted apart while we grew into our families and jobs.  Following my cancer diagnosis, we got back in touch.  The weekend and the game were awesome.  It was fun reliving our college days and talking about our current stage-of-life issues (i.e. having daughters and what are we going to do when they are teenagers?).  I was smiling and/or laughing the entire trip.  Thank you Yann Phung for helping me go on this trip.  I couldn’t have done it without you.  Thank you to Claiborne Johnston for organizing the suite and orchestrating an awesome day.

This weekend is the four-year anniversary of my diagnosis.  I know I wouldn’t be where I am today without God, all of your prayers, support, and your acts of kindness.  Keep them coming because on Monday the 23rd I have my body scan and get the results on Tuesday the 24th.

Yann, me and Craig enjoying the JMU victory

Me with the only five time Super Bowl Champion and JMU alum, Charles Haley

Celebrating the JMU victory

Joy and Peace

A large number of the people who walk into my office during the holidays don’t look forward to the holiday season.  Usually the holidays bring up memories of a loved one who has passed away.  The void left by their loss hurts and the frequent reminders of Christmas smothers the individual in grief.  Typically their holiday memories always start positive, but within seconds they spiral downward once the individual remembers the loved one that has passed away.  I often hear, I wish I could close my eyes and wake up in January.  I’m fortunate that I haven’t experienced that type of void.  But I can’t help but be aware of the thought that in the future, I may be the void my family experiences.  Every Thanksgiving and Christmas I think, will this be my last Christmas?  And even if it is, I plan on enjoying every moment.  I love this time of year.  I’m a big kid counting down to Christmas just like my kids.

We had a wonderful Thanksgiving with my family in Newport, Rhode Island.  It was great visiting family and watching my daughters play with my brother’s daughter.  After Thanksgiving we came home and set up our Christmas tree and decorations.  Anabel woke up the next day, ran to the tree, and was upset that Santa hadn’t visited.  I tried to explain to her that Santa wasn’t coming until next month.  But again the next morning when she woke up, she ran to the tree expecting presents and experienced the same let down.  I tried my best not to laugh as she looked at me through her tears, and explained to her that Santa was coming next month.  I was relieved when December rolled around because at least now we could count down to Christmas using an advent calendar.

Anabel turned four in September and I believe this is one of the best Christmas ages. Anabel is so excited about Christmas, she can’t sleep at night.  She has been falling asleep around eleven o’clock every night because she can’t stop thinking about Christmas.  All of her thoughts are consumed with Christmas.  She constantly wants to see pictures of herself or her sister sitting on Santa’s lap.  At night I often I find her talking to different ornaments on the Christmas tree. On the way to daycare last week, she told me, “Dad I like you, but I love presents” (I know I can’t compete with Barbie, but at least she likes me).  Her mindset is contagious and I love it.  I wish I could bottle it up and give it away.  

My faith has also filled my heart with joy and peace.  This joy and peace leads me to meditate more on the birth of Jesus and what his birth means to me.  Through all my joyful Christmas experiences, I understand how a loss of a loved one can turn joy to pain.  Please hold those who struggle during the holidays in your prayers and thoughts.  May you experience joy and peace in your heart this season and may it last throughout the new year.    

This past weekend I went to Philadelphia with Matt Leslie and his daughter Eliza to attend our annual father/daughter Eagles game. (Kirk, you and your girls were missed. Like every year, next year will be the Eagles year)  Despite the Eagles loss, it was a great weekend.  I laugh to myself when I think of the two people I channel for inspiration…Jesus and Rocky

Katie and I in front of the Rocky statue.

Here we are running up the steps.  A boy began playing the Rocky theme song while we ran up the steps.

Eliza, Katie and I after running up the Rocky steps.

Good News!

My scan came back clear of cancer.  It’s been a long couple of days, but I will sleep good tonight.  I’ll also enjoy the holidays more knowing I’m in remission.   Thank you for the prayers, kind words, positive vibes and support.  Now we’ll do this again in three months. God bless.

What is Normal?

Throughout my cancer experience, I always wanted to be “normal”.  Over the past couple months, I’ve felt and lived more “normal” than ever.  But I recently realized, even though I’ve been feeling and acting “normal”,  my life has not been fulfilling.  For example, the other day while paying bills, I was looking out the window thinking about bills.  This never would have happened last year. Previously I would look out a window and admire the majesty of nature, and not be preoccupied with any another thought.  Trying so hard to bring normalcy to my life, I lost what fulfilled my soul.  I realized I lost my mental discipline to focus truly on what is important.   

I found myself going through the motions, which I used to want, but now see it’s time wasted.  For example, some evenings I would browse the internet, Janie would be doing the same thing and the kids would be watching something on TV.  We are in the same room, but not really interacting. I kick myself because I will never get those moments back.  Another example is when I’m thinking about if a football player will start for my fantasy football team in the upcoming week.  I find it absurd, yet I still do it.

I need to stop focusing on trying to be “normal” because “normal” isn’t fulfilling me.  I have a grace to see beauty in everything and everyone and I don’t want to lose it.  I know the only way for me to regain my mental discipline is silence.

I was taught in school that silence is uncomfortable for many people.  In my practice, I often will sit in silence with a client knowing the individual will feel the urge to fill the silent void. Usually the client will continue the conversation or say what they believe I want to hear.  At times, I too am uncomfortable with silence.  Sometimes I surround myself with noise or stay busy doing mindless and needless tasks to occupy my time and brain.  I may go by myself and find some alone time, but during my alone time, I still feel the need to browse some form of media.  At home it is challenging for me to sit alone in silence, but the car is a different story.

I sit in silence whenever I drive by myself.  (Now when my children are in the car there is usually some pop music or, more recently, Rocky theme music blaring in the car.)  But I use this silent time to pray and meditate. When in silence, the thoughts that come into my head are sometimes funny, sometimes sad and other times joyful.  Usually it’s people faces and past experiences that come to mind.  Whoever’s face pops into my mind, I pray for them.  I also use this time to focus on my life and God.  This helps me obtain the mental discipline I need to be fulfilled spiritually. I ask all of you to try to sit in silence for 20-30 minutes and notice your thoughts.  It usually is interesting seeing what comes to mind.

I also had some awesome moments over the past few months.  I played in Katie’s school’s annual golf tournament.  I went to Chicago to see the Philadelphia Eagles play the Chicago Bears.  We celebrated Anabel’s 4th birthday and my 40th birthday. This week I spent a day in Washington D.C. with Katie and went on a field trip to a pumpkin and apple farm with Anabel.  Today I also began my 2 week chemo cycle.       
I notice when scans are approaching, my thoughts are filled with angst.  I know I will always feel this way before scans.  This upcoming scan is no different.  Monday I have my quarterly chest, abdomen and pelvis scan.  So please send positive vibes, thoughts, and prayers my way on Monday.  I will learn of the results on Wednesday.

Matt Leslie, Kevin Gladstone, and Garret Keeler.  Team Merica golf team.

At the Bears Eagles game in Chicago with Tom Michaels and Roger Nouer.  It was the best 40th birthday present. (There’s still room to hop on the Wentz Wagon)  

Anabel picking pumpkins.

Katie learned the Washington Monument wasn’t that tall.

Katie and I stopped by the White House for some milk and cookies.

A Beautiful Summer

I haven’t updated my blog over the summer because I’ve been busy. I went on a pilgrimage to Rome, Italy and Lourdes, France and spent some time in Barcelona, Spain.  I also went on a family vacation to Georgia and Florida and had a mancation in San Diego.  Each of them were special in their own way.

I’ve had a beautiful summer traveling overseas and across America.  The trip to Spain, Italy and France was a spiritual pilgrimage.  The trip to Florida and Georgia was our family vacation to see family.  I recently returned from a solo trip to San Diego, California, where I spent time with my childhood friends.  All of them different and all of them beautiful.

My trip to Europe was for spiritual and physical healing.  This was my third to trip to Rome since being diagnosed.  It is my favorite city in the world.  Janie and I have it down now.  We stay in a great neighborhood and have our favorite places to eat and visit.  Even though I love the culture and history of Rome, the purpose of the trip is to visit St. Peter’s and other major basilicas.  I went this summer specifically to go through the Holy Doors, because you experience certain graces during this year of Mercy.  I also wanted to show my daughter Katie how important spirituality is in my life and to give her perspective of how “cool” spirituality can be in different parts of the world.  

While I did enjoy the pizza, gelato, and red wine of Rome (I love being off my diet), I spent most of my days praying at different basilicas.   I would pray for healing. I would pray for all of you.  It’s ironic because I pray for the cure of cancer, but I also pray about being thankful of my cancer experience.   Cancer has given me a perspective I never would have had unless I was sick.  I’ve been able to travel the world.  I’ve experienced love and support from family, friends, and strangers.  I’m able to connect with others who have suffered.  These are all blessings from cancer.  Don’t get me wrong, I want to be cured more than anything, but I also have learned a lot from my cancer journey.

Another major part of the trip was to visit Lourdes, France.  There have been many recorded healings in Lourdes after bathing in the water and drinking the water of Lourdes. Lourdes is famous because in 1858 a girl saw an apparition of Mary.  Mary asked the girl to dig in a spot and water began coming from the ground.  This spring water has led to many spiritual and physical healings.  I went to be healed by drinking and bathing in the water.  

Lourdes is my kind of town because there are hundreds of sick people from all over the world who go in hopes of being healed.  You see people in hospital beds and medical rickshaws being wheeled throughout the sanctuary.  It was peaceful because I didn’t have to hide anything.  I could walk with a limp because my feet were hurting.  I could wear my lotion gloves and not be insecure. I could be myself and I felt “normal” for a change.     

While in Lourdes, a friend told me to truly pray from my heart.  I never knew how to pray from my heart until I became sick.  For me, praying from the heart is intense physically and emotionally.  I actually experience pain in my chest, accompanied with tears and I feel the need to scream but words can’t come out.  My prayers are like a to plea to God.  I’m pleading for my life and for more time to be with my children and Janie.  A plea to be cured.  

While waiting in line to bathe in the holy water, I was sitting next to a gentleman who had a terminal illness and was healed after bathing in the water of Lourdes.  He now has been returning to Lourdes for 13 years in thanksgiving of his healing.  When It was my turn, I didn’t know what to expect.  They walked me to a curtain to undress.  Then I was wrapped in a towel and they walked me to the bath.  The bathtub is made out of marble and filled with spring-fed water.  I was asked to pray for Mary’s intercession.  I began to pray from the heart.  Then they lowered me into the tub and quickly lifted me out of the water.  It happened so fast that I wanted to do it another time, but was told it wasn’t necessary.

Today as I type this, my time in Lourdes and Rome seems so long ago.  I would’ve love to spend more time in Lourdes because I really felt comfortable there.  I hope to go back there sometime because it is a special place.

Our family vacation to Florida and Georgia was great.  We saw family, old friends, spent time at the beach, and went to Disney World.  It was wonderful.  My mancation to San Diego was a blast.  I have many childhood and college friends that live there and I’ve been wanting to visit them but haven’t made the time.  Everyone out there has been supportive of me and my family since my diagnosis.  It was great spending time with them and their families.

Well the summer is over for our family.  Janie is back to teaching. Katie is back to school and Anabel is  back to daycare.  I am sad it is over, but it did end with good news.  Today I learned my brain scan came back clear of cancer.  My next body scan will be in October. Pray with hope, pray with faith and pray with love.      

Cardinal Stafford, Janie, Katie and I in the Vatican Gardens

Janie , Katie and I praying in front of St. Peter’s tomb.

This is in Bascilica di Santa Maria Maggiore. The picture is of the the Crypt of the Nativity (the wood is from the Holy Crib).  

These are some of the many medical rickshaws in Lourdes.

This is the grotto where Mary appeared to St. Bernadette.  The Mary statue is located where the  Marian apparition appeared.

This is the church they built upon the grotto.

This is a living statue in Barcelona that Katie and I stood in front of for ten minutes and didn’t know she was a person till we moved away from her.

Oma and Katie enjoying a drink on La Ramblas in Barcelona.  The sangria was not Katie’s.

Enjoying a fun day on the water in San Diego.  Fortunately we had an experienced Captain who kept us safe in the high seas of the Pacific.  

The crew ashore at a local watering hole.

Spending time with Christina and her beautiful family.  Christina started my gofund page which I never would’ve started on my own. Love ya C.  

Praise God! No Evidence of Disease Part II

I learned today I’m NED (No evidence of disease) again.  Yesterday I returned from my trip to Spain, Italy and France.  The past two weeks have been extraordinary (I will write about my trip later this month).  This morning I had my CT scan to follow up on the effectiveness of the radiation treatment I received on my lung in March.  And praise God, it was clear of cancer.  I will still maintain my chemo regimen, but I can tolerate the pain in my hands and feet for these results.  Thank you all for your love, prayers, and encouraging words.  This will always be a roller-coaster ride for me and my family, thanks for riding it with us.  We will always have faith, hope and love.

Mercy and Fatherhood

With my trip to Rome and Lourdes soon approaching and recently celebrating Father’s Day, I’ve been meditating on mercy and fatherhood and how they are entwined in my life. I’ve been meditating on the term mercy because the Pope proclaimed this year an Extraordinary Jubilee of Mercy and thus the reason I’m going on my trip.  I’m hoping to receive a merciful act,  being healed of cancer.   If that’s the case, there are no words that could describe that experience.  It would give me added time to spend with my family and allow me to see my children grow older.  Even if I receive the gift of  being healed of cancer, I still will pass away eventually.  That is why I view healing as a merciful act, but not the ultimate merciful act.   I believe true mercy is having the opportunity to go to heaven where love is everlasting.

Mercy and fatherhood are entwined in my life because my children observe my words and behaviors. Since being diagnosed, I think about what I want to teach them and how I can help them navigate life when I’m gone.  Do they see me doing kind and merciful acts with and for others?  Do they hear me using kind words with others? What kind of example am I setting?  I am far from being dad of the year, as Janie and my girls can attest, but I do my best and I hope my children witness me doing more positive and loving acts than negative. (Disclaimer-I do have a three hour window of unkind words during the Philadelphia Eagles games once a week for 16 weeks, hopefully playoff weeks as well, but that would be another example of a merciful act)

Father’s Day has more importance to me now than it did three and a half years ago.  It is a day that reminds me how of blessed I am.  I don’t need the added attention or recognition, but I do like it.  I like getting more hugs, homemade cards and seeing their proud smiles while giving me a gift they picked out or made for me. I’m in trouble because my girls have me wrapped around their fingers.  I just put on a front in hopes they don’t realize it.  I am still amazed that I am a father and have two beautiful, wonderful daughters. Since having girls, I’m more aware of societal norms placed on gender.  I am now a feminist and I don’t want the princess to be a damsel in distress, but instead I want the princess saving the prince, the king and the whole world.

I wish a wonderful and happy first Father’s Day to my good friend Gerrit Benson.  I’m excited for you and Amy to experience the joy of parenthood.  Tragically,  I know a young father who passed away earlier this month from colon cancer.  Please hold Josh, his wife Kelsey, and two year old son, Gunner, in your prayers and close to your hearts.

I will have my next scan in mid- July.  It will show how effective my radiation was in treating my lung tumor.  I will also pray for all of you at all the major basilicas of Rome and at the Grotto of Lourdes.  I know I wouldn’t be where I am without your love, prayers, and support.    

My dad and I around a fire on the Snake River in Idaho. I still and always will want to be like you when I grow up. Love you Zonk.

Perspective

Katie and I before May Procession

Last week my brain MRI came back clear of cancer.  My next brain MRI will be in three months.  I’ll have my body scan in June and then I’ll learn how effective the radiation treatment was with eradicating the nodule in my lung.  Physically I feel fine, except for the itching and burning sensation on the soles of my feet, which is one of the side effects of my chemo treatment.  I also learned that my actual fingerprints have gone away.  I’m required to provide fingerprints to renew my therapy license.  I was informed my prints were not acceptable because they weren’t well defined.  Come to find out, my fingerprints have actually worn away from the chemo.  I’ve thought about turning to a life of crime, but realize I would never get away with it because I’m too slow from the pain in my feet.    

It’s been two years since my brain surgery, but to me it seems ages ago.  When I think about that time, I remember I was hoping to get out of the hospital, so I could attend Katie’s kindergarten graduation.  I recall thinking, this may be the only time I see my child graduate.  I was able to attend the graduation and even had a tear in my eye as I watched the Class of 2026 get their kindergarten diplomas.  The funny thing is, I used to think kindergarten graduations were a bit ridiculous.  Now I can’t wait for Anabel’s graduation from Pre-K.  I don’t think I’ll bring a beach ball to throw around or an air horn to blow, but I may have a tear in my eye for being alive to see another graduation.   

This summer Janie, Katie,  Anny (my mother in-law), and I are traveling to Rome, Italy and Lourdes, France.  Janie and I always get insecure about telling people of our traveling opportunities and plans because traveling is expensive.  We are so fortunate to not have to pay full price for our flights.  Our airline ticket price is deeply discounted because  Anny worked for United Airlines and has given us her companion passes.  This will be Katie’s first “big” trip with us. When planning trips, I used to think things like, Why spend the money for kids to go on a trip when the kids won’t even remember the experience?  I now realize my jealousy of not being able to afford those types of trips for my family clouded my perspective.  I didn’t think about the parents’ memories of traveling with their children.  I believe Katie will love the trip, she’s already excited about being able to watch her own movies on the airplane. I understand she may not fully appreciate the beauty of the Pieta, but I will never forget the beautiful moments of holding her hand while walking through St. Peter’s holy doors or eating gelato in a Roman square.  My memories will be treasured.  I only wish we could include Anabel this time, but I know how much walking we do in Rome, and this isn’t the best time for her.  I will give updates about our trip and pilgrimage in the future.

Please hold Frank and Josh in your thoughts and prayers as they are battling cancer.  My boss Frank has always been supportive and loving towards me and my family.  Josh is young and a father with Stage IV colon cancer.

Happy Mother’s Day to all the mothers and mother figures in your lives.  Thank you for your continued prayers and reaching out to me through texts, emails, and facebook messages.  

Happy Mother’s Day Southpaw

Spring Update

I’ve completed my radiation treatment and am feeling fine.  I’ll learn how effective the radiation was this June when I have my next scan.  I have to wait till June because the radiation causes scar tissue which makes it difficult to clearly see nodules.  The scar tissue should be stable enough by June to identify the effectiveness of the radiation treatment.  The doctor was confident with the procedure and said the “radiation fell off before the aorta”,  which is a good thing.

Waiting for radiation to begin.  The table moves towards the blue circle and the arms rotate around me.

I have more good news.  My CEA level, a cancer tumor marker found in blood, was low. The higher the CEA number indicates the stronger the occurrence of cancer spreading. While at MD Anderson, my CEA level was the highest it’s ever been.  But I was relieved hearing my latest level.

When I was in Houston and got the results saying my CEA level had increased, I was scared my cancer was spreading and growing stronger.  Things were going so well before my trip to Houston and when I learned my cancer returned, thoughts of dying began creeping into my head.  Looking back, I get frustrated with myself because I need to trust in Jesus more, especially after Divine Mercy Sunday, but I find it hard at times.  It’s much easier to trust when things are going well, rather than when my future is uncertain.  I’ve made it this far, thanks to God, and I need to continue to trust and believe I’ll get through what’s ahead of me.  For me, trusting in God is not about living a long life, but rather being at peace with my life and its circumstances.

Over the past few weeks I’ve had numerous conversations with people who have had loved ones die from cancer.  One thing they seem to all say is that the dying happened so fast.  I think cancer is a blessing in that I don’t perceive death as happening fast.  I believe the perception of cancer patients dying fast comes from the patient presenting “normal” to others but quickly regressing.  If you look at me, I present “normal”.  But I’ve had cancer attacking my body for 13 years, 10 years undiagnosed.  My body can only handle the effects of cancer and treatment for so long before my body can no longer fight and I will present the physical signs of cancer.  Cancer is a blessing because I’m able to tell my friends and family I love them everyday, to the point where it sometimes annoys them, especially my oldest daughter. (But I’m okay annoying her by saying I love her)

Girls on Easter

I’m also back on chemo after a three-week break because of radiation treatment.  Overall, I’ve been feeling good following radiation and being off of chemo for the past three weeks. During radiation I was a little nauseous, but not nearly as bad as some of my earlier chemos.  Being off chemo and spending time with my family and extended family made for a wonderful Easter.  My brother and his family were able to visit as well as my mother-in-law.

I recently returned from Augusta, Georgia where I watched the Masters Golf Tournament. My friend Tom Michaels and his wife Mary offered me a ticket to go with them.  The Masters is like the Super Bowl of golf and I loved seeing the course, the players, and watching the spectators.  Mary was a rockstar, she’s 37 weeks pregnant and was running all over the place. Going to the tournament was another once-in-a-lifetime experience for me and I greatly appreciate spending time with Tom and Mary.  I also love southern hospitality.  Everyone we met was pleasant and kind.  I don’t consider myself a golfer, but there was a time in my life where I did play golf regularly.  I do enjoy playing golf but I’m not good, actually, I’m horrible.  My current excuse for being a horrible golfer is the side effects of chemo make it difficult to grip the golf club. People seem to be more lenient and accepting of my poor golf play because of my diagnosis.  I do play once a year at my daughter’s school fundraiser tournament and it’s always a fun time despite my poor play.

Mary, Tom and I at the Masters

I want to thank all of you for the prayers, kind words and support surrounding my radiation treatment.

Radiation Again

I met with my radiation oncologist and the tumor is able to be radiated.  I was relieved to hear this news.  The procedure doesn’t come without it’s own complications.  The tumor is 8mm from my aorta. The doctor was very confident it wouldn’t be a problem, which amazes me.  I’m grateful to be sick in this era of medical technology, where a tumor 8mm from my aorta is not deemed a problem.  I know there is a lot of research and funding going towards finding a cure and I’m hoping I’m around to see it. This time while receiving radiation,  I will not be listening to reggae or any other toe tapping music. I don’t want to be moving too much while I’m receiving radiation 8mm from my aorta.  I will have four consecutive days of treatment beginning March 21st.  I will be off of chemo for the procedure and the week prior because of the side effects chemo has on my blood.  This will be good because I won’t be in pain over Easter and I will be able to enjoy spending time with family and friends.  Hopefully no ER visits this year.

This Friday, March 4th, is Colon Cancer Awareness Day.  The color designated for colon cancer is blue, so wear blue on Friday.  Also, since it’s butt day, talk about  butts and colonoscopies. As always, thank you for your prayers and support.  We continue to fight on with the help from all of you.

Happy butt day!