Birthdays

Great news! My latest scan was clear of cancer.  I was 36 years old when I was diagnosed and I recently celebrated my 41st birthday.  In three months it will be five years from my diagnosis.  The five-year mark has been in the back of my mind from the beginning. Stage IV colon cancer survival prognosis rates are based on five years out from the date of diagnosis.  My five-year survival rate was never high (7% at time of diagnosis) and after the cancer metastasized to my brain the rate dropped significantly lower.  I don’t know what’s in store for me, but I do know I will have a better holiday season knowing I have no evidence of disease.

I think off and on about the five-year date, but on the night of Anabel’s birthday party it struck me.  After everyone went to bed, I was sitting on my couch reflecting on the day, and I began thinking I’m alive and Anabel is five.  I truly didn’t think I would see her grow up.  Anabel was just under four months old when I was diagnosed.  Unknowingly and unintentionally, Anabel has helped my personal growth more than anyone.  When I was first diagnosed, I feared loving her because it would be too hard to leave her.  I thought it would be emotionally easier to have my walls up with her so it would be less painful when I died.  I tried to go through the motions with her.  But each time I would hold her, I would melt.  Each time I would see her smile at me, I would crumble.  It was pointless to try to have walls up because she would go right through them.

I adjusted my work schedule to make sure I could spend every morning with her. Our mornings consisted of lying around and talking about life.  I loved it.  I remember wishing for it to be like the movie Groundhog Day because each morning was special and I didn’t want to lose it.  She was my sounding board when I needed to get things off my chest.  She would laugh at my silliness.  She would nap on my chest.  I would hug and squeeze her, not wanting to let her go.  Often, I would look at her and wonder, What will she be like when she’s older? Will she remember me?    

I didn’t realize at the time that my perspective was backwards.  I was preoccupied with her memories of me more than focusing on my memories of her.  I know I cannot control what Anabel remembers, especially her memories of me and of us.  Looking back, I didn’t feel I had control of my life and I was grasping to control something that was impossible, her memories of me.  My memories of her and us are a treasure I keep.  Those memories of us are my own “Groundhog Days”.

So on the night of her fifth birthday party, I made sure to go to her room and sleep in her bed.  As I cuddled with her, I thanked God I was alive to have the opportunity to hold her, to have memories of her, and the grace to create more memories.  

Thank you for your prayers for me and my family.  All of you are always close to my heart.  Please keep my friends Frank and Sara and their families in your prayers.  They’ve recently switched to new chemotherapies in hope of better results.

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Me and Anabel one month after my diagnosis.  

 

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Anabel striking a pose before going out trick-or-treating

 

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Three years ago after my brain surgery, I was given tickets to an Eagles game, hotel rooms in Philly, got to go on the field with the players, and in the tunnel with the players.  A couple of weeks I finally got to meet the people who arranged it for me.  (Not pictured Kirk Meekins, who told them of my story)                    

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Thank you Lori and Laine for a great time.  Hope to get back down there for a longer visit.

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Medjugorje and Split

I have recently received more great news.  Both my brain MRI and body scan were clear.  I will now have the brain MRI conducted every six months because it has been over three years without any recurrence of cancer.  My body scans will continue to be done every three months and I will remain on the same chemotherapy regimen.  The clean brain scan was another awesome milestone for me.  Soon after my brain surgery, I recall a doctor telling me that the longest she saw someone in my situation go without a recurrence of a brain tumor was three years.  I feel uncomfortable writing that sentence because my first thought is I’m jinxing myself.  But I realize God’s plans don’t take jinxes into account and I feel blessed to be here in my condition.

These scan results capped-off a wonderful trip with my family and parents to Bosnia-Herzegovina and Croatia.  Last summer we discussed and planned this trip with my parents.  I thought it would be a special opportunity to share the graces of Medjugorje and beauty of Split with my children and parents.  Medjugorje and Croatia have always been special to me and Janie and I can’t believe it was our third trip out there.  We are so blessed and thankful.  

Each of the trips over there have been different for me.  My first trip to Medjugorje was a spiritual battle.  Prior to the trip, I had tried three different chemotherapy combinations and was on the fourth.  I was told I would never be cancer-free.  I had lost my dream of normalcy and of beating this disease.  I needed spiritual healing, strength, and hope.  The second trip to Medjugorje came after my first clear scan.  It was a joyous trip of thanksgiving for my health and good fortunes.  Lastly, the most recent trip was to experience Medjugorie with my family.  This last trip was tough physically because of the side-effects of chemo.  I had my IV chemotherapy the day prior to leaving which went okay, but the side effects from my daily chemotherapy pills began to hurt my feet immediately and I struggled with walking.  I used Anabel’s stroller as a walker to help alleviate the pain in my feet and even when Anabel wasn’t in the stroller, I relied on it for support.  Many of Mejugorje’s religious sites are on rocky terrain and I knew it would be difficult to go to the sites with the pain in my feet.  As a result, I decided to stop taking my chemo pills during the trip.  This kept the pain from getting worse, but the pain didn’t completely subside.  Usually stopping chemo would cause me to worry about my cancer coming back, but I was comfortable with the decision.  

Medjugorje is special to me because it’s a place of hope and inspiration.  I love the diversity of the pilgrims that go to Medjugorje.  I find it beautiful when people come from all over the world to share faith.  Medjugorje is comforting in that it’s easier for me to live my faith there because everyone you see whether in a church, restaurant, grocery store, etc., is there for the same reason.  Witnessing others’ strong faith inspires my own faith.  I love having places like Medjugorje where I can feel closer to God.  I love going to mass daily and having opportunities to put God first in my life.  I love having saints watching over me and rooting for me in life.  All of this makes it easier for me to do what I believe is the most important thing in life- To love God and to love everybody.

 We went to Medjugorje because Mary has been appearing in the town of Medjugorje in Bosnia and Herzegovina for 36 years.  She appeared to 6 children in 1981 and continues to appear to some of them even though they’re older and some have moved away from Medjugorje.  Our most recent trip coincided with one of the visionaries receiving a message from Mary.  This was my first time being there for an actual apparition (as they call it).  Mary appears to one visionary on the 2nd of every month on a hill outside of town.  The people from the town and visitors from around the world go to the hill to pray and listen to the message.  This was Mary’s message to the visionary on that day.  We were so blessed to be there with so many others during the apparition.

 

“Dear children,

Thank you for continuing to respond to my invitations and for gathering here around me, your heavenly mother. I know that you are thinking of me with love and hope. I, too, feel love for all of you, just as my most beloved Son also feels it: He who, through his merciful love, is always sending me to you anew; He who was man; He who was and is God – one and true; He who suffered in body and soul for your sake; He who made Himself bread to feed your souls and thus to save them. My children, I am teaching you how to be worthy of His love, to direct your thoughts to Him, to live my Son. Apostles of my love, I am covering you with my mantle, because as a mother I desire to protect you. I am imploring you to pray for the whole world. My heart is suffering. Sins are multiplying, they are too numerous. But with the help of those of you who are humble, modest, filled with love, hidden and holy, my heart will triumph. Love my Son above all and the whole world through Him. Never forget that each of your brothers, within himself, carries something precious – the soul. Therefore, my children, love all those who do not know my Son, so that through prayer and the love which comes through prayer, they may become better; that the goodness in them could win; that souls could be saved and have eternal life. My apostles, my children, my Son told you to love one another. May this be inscribed in your hearts and with prayer, try to live that love. Thank you.”

 

    

Visiting Medjugorje was the main purpose of the trip, but we have also fallen in love with Croatia and spent a lot of time exploring the city of Split and surrounding islands.  The kids had many highlights (i.e. the plane ride and watching movies, eating ice cream- twice daily!?!, pizza, street performers on the promenade, boat rides and some church hymns).  But their favorite thing about the trip were the stray dogs in Medjugorje.

Thank you Zonk and Nan.  We couldn’t have done this trip without you.  We love you.  Thanks to all of you who read this blog and keep me and my family in your thoughts and prayers.  Words will never be able to express my appreciation.

Also, please pray for Janie’s cousin John Arguello-Dyck and his family and friends.  He recently passed away from cancer.  He was a talented writer and ran a sports-writing blog about the Chicago Cubs http://www.chicagonow.com/cubs-den/    

 

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Risen Christ statue in Medjugorje

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Hiking up Cross Mountain

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Top of Cross Mountain

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Kravica waterfalls in Bosnia Herzegovinia

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Me and Janie in front of one of the falls

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Laundry line towel races provided much entertainment

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Anabel and her pizza

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View of Split’s promenade from the water

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My parents and the girls on the promenade

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View from the castle on Hvar island

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The girls hanging out.  Anabel trying to keep up with big sister

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Anabel enjoying a frozen treat

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Enjoying a swim in the beautiful Adriatic.

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Blue Cave

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The bell tower of Diocletian’s Palace in Split

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The girls playing with “Jasper” and “Chilly”

May Graces

It has been awhile since my last post.  In April I had another clear scan which makes it over one year of having clear scans.  I mentioned the word remission in previous posts.  I choose to believe I am in remission, even though I am on chemotherapy and we don’t know if it’s the chemo working or if I’m actually in remission.  Neither my doctor nor I want to test it out by going off of chemo.  

I haven’t written anything lately because I didn’t know what to write.  I’ve been feeling blah, not good, not bad.  Then recently a friend asked me, “How do you stay close to God on a daily basis?”  I haven’t been doing the things I used to do to stay close to God.  I stopped going to church daily because Anabel’s pre-k schedule didn’t match morning mass times.  I still pray in the car daily, but my thoughts are often wandering or I just recite words without meaning in hopes of getting prayers done before reaching my destination.  On some nights, I find myself not joining my children for bedtime prayers because I had to write something for work.  I consciously realized I was getting further away from God, but I wasn’t making any effort to change my behaviors.

Then May happened.  This month of May has been full of graces for me and it is something I needed spiritually.  First, I went to a wedding of two friends and got to witness love and joy.  It was great to see people at the event that I haven’t seen since college and I was humbled to hear people were following my story even though I haven’t spoken with them in years.  Next, I got to visit a friend who recently had twins and it was great seeing his excitement about being a father for the first time.  Also, we celebrated my dad’s 70th birthday.  My dad’s party was a surprise bash filled with laughter and more laughter.  A childhood friend, who is usually overseas, was able to attend the party and it was great catching-up and reminiscing about “the good old days”.  To top it all off, my cousin became engaged and I got to be a part of more love and joy.  May was full of love, joy, and excitement.

Katie turned nine in May.  Her birthday is very special to me because when I was first diagnosed I would pray, beg, and barter with God for me to be alive to see my children grow up.  So this makes five birthdays Katie has had since I was diagnosed.  Survival rates for stage IV cancer are based on 5 years.  When first diagnosed, I had a 5-7% chance of surviving 5 years and then that dropped even lower when it metastasized to my brain.  Katie’s birthday is a marker for me because I didn’t think I would be alive to celebrate with her for this long.  I don’t know what my future holds for upcoming birthdays, but I praise and thank God I’m alive to witness this past birthday.

This in turn leads me to my friend’s earlier question, “How do you stay close to God on a daily basis?”  It is not easy.  I found God when I was first diagnosed.  I needed God because I was terrified of not being there for my family.  It’s frustrating, but I find it’s easier for me to stay close to God when I struggle.  Looking back on my life, prior to being diagnosed, I never truly struggled.  I had ups and downs but I never really had an experience I couldn’t handle on my own.  I always believed in God, but never felt I had a need to focus on God outside of church.

My answer to my friend’s question changes frequently.  It took him asking me the question to bring God back to center in my life.  I don’t believe in coincidences and his question helped me realize the many graces I experienced with friends and family affirms my belief in God.  Through these experiences, I’m able to see God everywhere and in everything.  When that happens, God is in my life daily.  Thanks Nuge.

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Our Easter pic

 

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Wedding after party

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Capt. Party and family

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We had sailor hats and staches for my dad’s 70th. He was in the Navy and had a mustache the majority of my childhood.

Sarahs good pic

My 93 year old grandmother, grandkids and great grandkids

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Anabel’s Pre-K graduation pic.  I just love this pic and had to throw it in.

 

Happy Colon Cancer Awareness Month

I started off the month by getting a colonoscopy.  I’m supposed to get one annually to make sure I don’t develop another tumor in my colon.  The doctor removed three polyps, which is three too many for someone like me, but they were small.

The colonoscopy is not the scary part for me. However, what is scary, is being off of chemotherapy for six weeks prior to the colonoscopy and for two weeks following the procedure.  Chemotherapy has become a strange comfort for me in my cancer experience.  I had put off this most recent colonoscopy for two years because my chemo regimen has been working so well and I didn’t want to risk the spread of disease by going on a chemo break.  Since my last scan was clear, I thought this would be a good time for a colonoscopy.  And I pray that with faith, hope, and love, everything will be okay with my future scans.

I should have known I would get colon cancer because my butt has been my nemesis ever since I can remember.  As a child, my derriere was large in comparison to my body’s frame.  My brother kindly pointed it out to me on a regular basis through the nickname of tocks (short for buttocks).  Ironically, my shrinking rear was one of the reasons I initially thought something was wrong and went to the doctor.  I noticed it was getting smaller due to unintended weight loss. That is one of the possible signs of colon cancer.  Tomorrow let’s feel free to throw around some butt-talk and raise awareness of colon cancer.

Remission

My scan was clear of any masses and I’m in remission. I know I wouldn’t be where I am today without all of your support.  God bless.

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.

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Yann, me and Craig enjoying the JMU victory

 

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

 

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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

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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.

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

 

 

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