Checking-in

I’ve been thinking of you all and I hope you and your loved ones are safe. 

I wanted to check-in with everyone who was wondering about my health. First off, I’m okay.  I had a brain scan in February which was clear of tumors. Since my last post, I changed my chemo pill regimen because my feet and hands became too sensitive.  I now take my chemo pills on alternating weeks instead of two weeks on and one week off.

Since the COVID-19 pandemic, my doctor and I decided to go off of my infusion chemo for eight weeks.  This summer, I was planning on having a simple outpatient procedure to replace my port (where I receive my infusion chemo).  I’ve had my port for seven years and it has now built up scar tissue which is blocking my port from drawing blood. Usually, for any type of surgery, I have to be off my infused chemo for six weeks because it negatively impacts my blood and prevents it from clotting.  With the outbreak, we decided to move the procedure up to May and this will allow me to avoid hospital visits over the next two months.  

My family and I have been isolating and following the CDC guidelines.  I know it’s harder on my girls. Anabel was upset and confused about why everything was “taken” from her (school, friends etc.) but overall they’re doing great.  I am very fortunate that I am able to work from home. I am currently doing telehealth (video conferencing) sessions. You can check out my virtual waiting room, https://doxy.me/kevinwein.  I’m still adapting to the change in how I meet with people, but it’s getting easier.  There is such a need for mental health treatment now, I’m thankful I can do what I can.   

 During this pandemic, I have to be extra careful because I’ve been on chemotherapy for over seven years and I’ve had five lung surgeries and two lung radiation treatments.  I spoke with someone from a Baltimore hospital that, at the time, had roughly 20 Covid-19 patients. He told me the ones with underlying lung issues were intubated and fairing worse than other patients.  

I know for many of us, our quality of life has been impacted by COVID-19.  As someone with a compromised immune system and underlying lung issues, my family and I can’t express enough our gratitude for everyone’s effort and sacrifice in taking COVID-19 seriously.  During my cancer journey, I experienced many dark times and what got me through those dark times was faith, hope, and love. And faith, hope, and love will get us all through this.      

A friend sent this prayer to me today and I think it’s a good one to share.It’s from Joseph McShane, a Jesuit priest and President of Fordham University.

To those afflicted with COVID-19, swift healing;

To the frightened, courage;

To the dying, comfort;

To the dead, eternal life;

To health-care providers, strength and stamina;

To our leaders, wisdom and compassion;

To our nation, unity of purpose;

To the Church, the grace to serve the suffering selflessly;

To all believers, strong faith in Your presence;

To the whole human family, unity of heart; and

To us, your servants, the reward of knowing that we are doing Your will when we spend ourselves in loving service of others.

2019

This past year I haven’t written as many blog posts because I feel that I’ve been doing well and I think people will get tired of reading about the same thing.  I don’t consider myself a writer. Actually, English class and any writing class were my worst subjects in school. I created this blog to get information out to everyone about my health and to receive support during my cancer journey.  I know that in order to get support, I need to be open and vulnerable, so I try to put my thoughts and feelings out to the world. At some point along the way, this blog became therapeutic for me. I do plan on writing more this year. It is a good format for journaling that I also use for reflection. So on to my update.

I’m doing well and I’m feeling thankful.  My recent brain MRI and body CT scan came back clear of cancer.  I will be having a colonoscopy later this month and I will need to be off chemo for a total of 8 weeks (6 weeks prior to the procedure and 2 weeks after the procedure).  I’m feeling thankful for another round of clear scans. Part of me is looking forward to being off of chemo for 8 weeks because my hands and feet need a break. However, there will probably be a spike in my scan-xiety for the next round of scans due to being off chemo.

I’m healthy and feeling good, but I have experienced some loss.  Recently, Frank Gibson Jr., the owner of the practice where I work, passed away from cancer.  He had been suffering for awhile and I am relieved he is no longer suffering. Almost six years ago I left my job at Hopkins and joined his private practice.  During that time, he became one of the most important people in my life.

When job searching, I happened to come across and apply to this rinky-dink two-sentence ad on some job website.  I applied out of frustration after my salary negotiation with Hopkins wasn’t what I expected it to be. The act of applying was more of a reaction than actually seeking a new job.  I faxed my resume and I didn’t think anything of it. I didn’t send out any other resumes because I enjoyed who I worked with at Hopkins and didn’t want to leave my clinic. I don’t remember when I heard back from him, but I remember going to the interview to learn about the job.  Most of the job interviews I’ve experienced have been cold and focused on information gathering with both sides judging one another. This one was different. Early on in the interview, I noticed Frank stopped judging me, at which point, I knew he liked me. I accepted the position right then and there.  I knew it would be a good match.

I planned on working with Frank for 3-5 years, learning the ropes of the private side, and then moving on to start my own practice.  It took some time to adjust to private practice. There is a big difference between working for yourself in a private clinic versus working for an academia/hospital clinics, which had been my experience up to now.  I was excited to be there and I wanted to work as many hours as I could. I felt very comfortable working there. My caseload was full, Frank and I would badger each other over our baseball teams. He loved the Baltimore Orioles and I am a Tampa Bay Rays fan.  Oftentimes, we would commiserate on our distaste for the Yankees and Red Sox. About three months into my time working there, I vividly remember talking to Frank in our kitchen area about an upcoming colonoscopy. I was sure it was nothing, but I recall his facial expression was of concern.  

You know the results of my colonoscopy.  This is when our friendship became even stronger and I knew he cared about me as a person.  I don’t know how many work days I missed, but I know it was more than the FMLA-allotted 12 weeks.  If I were still at Hopkins, I would have been let go because of absences from work due to my disease.  As a result, I would have had to go on disability, which would have been difficult because I find tremendous personal value in my work.  Fortunately, I worked for Frank and he allowed me to manage my treatment and work when I could. For example, during those first two years, I was going to the hospital at least three times a week.  Additionally, I had numerous surgeries and procedures that kept me out of work for weeks at a time. During this time, despite contributing less to the practice, Frank gave me a pay raise. I have never heard of any instance when a person gets a raise because of cancer.  I believe he saved me because his actions allowed me to continue to do what I love. My family and I are forever grateful for his generosity.

I always told him I appreciated him and what he did for me and my family.  This would always make him feel uncomfortable. He was the type of individual who couldn’t take compliments.  With each compliment I gave, he would remind me he wasn’t nice and that he was a “son of a bitch”. This was our catchphrase and from then on, we would always end our conversations by calling him an S.O.B.

Frank was the one who connected me to Cardinal Stafford.  Frank was raised Catholic but had stopped going to church.  Growing up, he attended Catholic school and would often get into trouble at school.  He once told me, during a visit to the principal’s office, he and his father met with the principal and a priest named James Francis Stafford.  When I was diagnosed, he contacted Cardinal Stafford and told him about me.

At some point, Frank told me he began to pray again.  He said he would pray for God to take away my cancer and give it to him.  He said he lived a good life and was able to see his children grow up and be parents themselves.  On the day of my first clear scan, I called Frank and told him of my miracle. He was elated. I was going on a trip and I told him we would catch up and celebrate when I returned.  I spoke with Frank on the way back from the airport to discuss a plan to celebrate. He then told me, on the day I learned my scan was clear, he was diagnosed with Stage IV lymphoma. I was in shock.  I didn’t know what to say.

Then a new connection and bond began, having Stage IV cancer.  We would talk about treatments and we would flex our arm muscles in gesture to show cancer we were strong S.O.Bs.  His cancer was aggressive and his treatment was exhausting. He would say, “I just want to make it to my 70th birthday.”  And that became the goal. He accomplished that goal and continued to push through with his treatments. The more treatments he received, the less I saw him.  He told me he started going to church more, and I joked with him about lightning striking him when he walked in the door. He made it to his 71st and 72nd birthday.  He made it through this most recent Christmas and passed away peacefully on December 27th, surrounded by his family and friends.

When I say things happen for a reason.  I do not know why they do. But it is clear to me everything in my life lined-up for a reason.  I was supposed to apply to this ridiculous ad on some job posting site to connect me to Frank. He took care of me when I needed it the most in my life and he connected me to the Cardinal, who helped me open my eyes to Christ.   

Enjoy playing golf with your dad with Penny by your side.  

Thank you and I love you…you son of a bitch.

Over Christmas break we went to Florida to visit Janie’s mom, brother and Aunt.  On the way back we stopped by Disney and my aunt and uncle in Georgia.  We had a great break.

Katie and Anabel at the Magic Kingdom

Janie and I… and photo bombers.  Yes, there is some gray in the beard.  

Oma and the girls.  Happy birthday Oma.

Girls enjoying the beach at sunset.

Dr. Flip Flop

My recent brain and body scans came back clear of cancer.  My body scans will now be every four months and my brain scan will continue to be every six months.  We had a great summer and, as usual, it goes by way too fast. Janie, her mother and I went to Germany (more about the trip in a future blog).  We also went to a family wedding in Colorado. Now Janie and the girls are back to school.

Recently at a hospital visit I was mistaken for a medical doctor.  I later learned the doctor thought I was a medical doctor because I wore flip flops with a shirt and tie and who else would wear something like that except for a medical doctor.  I wear flip flops because my chemo causes the soles and sides of my feet to be severely sensitive. This incident reminded me of a time I was told by a psychiatrist’s wife, “We all have doctorates in something, not all of us have initials after our names.”  I agree with her statement. Everyone’s an expert in something. My “doctorates” are in Philadelphia Eagles Fandom and being a Stage IV colon cancer patient. It doesn’t mean I know more than anyone else on those topics, I just have more knowledge in those areas than other areas.  One of the doctorates I chose, the other I had no choice. Both would seem to set one up for a lifetime of emotional and physical pain. Five and a half years ago, I wouldn’t believe the Eagles would’ve won a Super Bowl or that I would be where I am in my cancer treatment. Both are miracles.

I wouldn’t change my expertise of being a cancer patient for anything.  I often joke I wished it was a stubbed toe and not Stage IV colon cancer which changed my perspective, but now I know it was for a reason.  I needed to experience suffering to move forward. It made me a better human (Anabel is on this kick of calling everyone a human. She tells me I’m “one of her favorite humans”).  My cancer patient doctorate has given me more purpose in life. I’m still praying for guidance into how to best use this gift. I know I need to help others. I’m still working on how to help others and in what capacity.  One way I’ve noticed how cancer has helped me help others is through my own suffering.

In my job, when I meet with a female or someone of a different race, I share with them that I have no idea what it is like to be a female or their particular race.  But what I do know and what we all have in common are feelings – happy, sad, anger, worry/fear etc. Before cancer, I had experienced those emotions, however, I had never experienced suffering.  Many of the people I meet with are suffering and I can truly empathize because I now know suffering and all it entails. I’ve also been able to see more cancer patients and others with chronic medical illnesses.  I believe all of this will help me find my path towards a purpose and lead to a better understanding of why I’m still alive. I could still use your prayers for wisdom and helping me understand my purpose.

My Philadelphia Eagles fandom “doctorate” is much different.  Years ago, I remember talking to a friend about how I didn’t have a hobby and how I thought I needed one.  He looked at me and said, “your hobby is the Eagles.” I now view my hobby as a “doctorate”, it helps me feel better about myself.  I understand sports mean nothing, but yet, they mean everything. Football won’t cure cancer, but at times, when watching a game, I don’t think about having cancer for 3 hours. When the Philadelphia Eagles won the Super Bowl, I experienced something I’ve never experienced before and I can’t describe the feeling (as pathetic as that sounds).  I remember calling my brother and not being able to talk, just screaming strange guttural sounds. I’ve had so many great memories of going to games and watching games with family and friends. The best thing about this “doctorate” is that there are millions of others with the same one.

When I thought I was going to die, I bought a paver with our names on it that was used for the walkway entering the Eagles stadium.  I wanted to pass along something I was passionate about permanently to my kids. The fatality of cancer still has a grasp on me. When the Eagles won the Super Bowl, I thought that I would die this year because they won in my lifetime.  It was something I used to barter with God when I was first diagnosed. I know how absurd that sounds, but I thought I was adding decades to my life. It is the Eagles after all. It’s ironic but since they won the Super Bowl, I’ve been less focused on them.  I still want them to win every game but it isn’t as consuming. After a lifetime of disappointment, there is now relief. I may have time to find another hobby.

Me and Janie at the wedding

At the Continental Divide in Rocky Mountain National Park.  Fifteen years ago I hiked here with my friend Matt, who also has an Eagles doctorate, for four days.  This time I couldn’t hike up two hundred yards without feeling pressure in my chest.  I think my lung surgeries have impacted my hiking, but I’m also out of shape and not 26 years old.

Parade Day

Parade Day

I had to include these two guys.  SuperBowl MVP Nick Foles kneeling in the front of the bus and Carson Wentz on the other side of him.

The  Eagles paver

The Streak Continues

In April I had another clear scan!  My treatment will remain the same- chemo infusion once every three weeks and oral chemo daily for two weeks.  For the first time, my oncologist used the word “amazing” to describe my situation. I’ve been seeing him for over five years now and he has never described my situation that way.  At my recent visit, we reminisced about our journey together.  He told me how he remembered walking into my hospital room for the first time.  I was taken back by that because it was his weekend of rounds at the hospital and I know he saw many patients that day.  Here is a guy who has seen hundreds of patients over the past five years, and he specifically remembers meeting me for the first time and in which room.  I’m a pretty good guy, but I’m not really that impressionable of a person. It just reaffirms my belief that we were supposed to cross paths. I know I wouldn’t be where I am today if he wasn’t involved in my life.  

Hearing him say my scenario was “amazing” reaffirmed my understanding of how my experience is unique.  At my brain scan appointment in January, my brain radiation oncologist went out of his way to bring a resident in to meet me.  He told me he wanted to show her a positive story of someone who has had cancer metastasized to the brain. I knew I always wanted to inspire hope for others in my situation but I never thought of providing assurance and hope to doctors.  I know my story is rare and I thank God everyday my story has gone this way. ( In case my morning is rushed and I’m in a whirlwind, I actually have an alarm set for 8AM every morning that reminds me to praise God and thank God)  

Good news comes with some sadness.  In April, we had my grandmother’s interment.  My grandmother lived to be 94 years old and she was fortunate to have a sharp mind to the end.  My relationship with my grandmother blossomed when I moved to Maryland nine years ago. We moved in with her when we moved up from Tampa.  I thought we would be able to help her out (she was 83 years old at the time), while she helped us out with a place to stay. I quickly learned she needed no help whatsoever and she ended up helping us more than we ever helped her.  We eventually moved out and bought a house across the field from her house.

After my colonoscopy, my grandmother was the first person I told.  My parents were on vacation and I didn’t want to burden them. I felt I needed to tell someone so we stopped by her house before going home.  She was the matriarch of our family and she could tell other family members because I have a large extended family. I still remember telling her I had cancer and in the same sentence telling her not to worry because I was young and this wouldn’t be a problem.  I remember being ignorantly confident about beating cancer. I also remember having a lot of nervous energy and I was trying to act normal but I couldn’t sit still. I tried sitting down to work on a jigsaw puzzle (which I always did there), but I couldn’t sit down.  My brain was flooded with thoughts.

When my chemo treatments weren’t working and I was running out of treatment options , my grandmother and I became closer.  We had a new bond that isn’t too common in grandparent-grandchild relationships…thinking about dying. At that time, she wasn’t in poor health, but she was in her 90’s and realized she wasn’t getting any younger. We would often talk about dying and share our thoughts, feelings and beliefs on what happens to people when they die.  Talking about our feelings was a new area for us to cross.

My grandmother was a child of the Depression Era and I never knew her to talk about her own feelings.  Death is often a taboo topic because it addresses our mortality.  Death is the great unknown. We often don’t know when or how we will die, but we know it will happen to all of us. Having discussions about death helped normalize a lot of my thoughts and feelings  As a result, facing death caused my grandmother and me to reflect on our own lives. It was positive for us to talk about our appreciations of our lives and our family.   We would share stories, but I mostly listened to her stories because they were so much better than mine.  I loved hearing her stories about growing up and hearing about what is was like to live in the 30’s and 40’s.  It’s interesting reading about events that happened in history, but it’s better listening to stories of someone who was actually there and lived through it.  She witnessed so many events and changes in our world and country over her 94 years. I can’t imagine what this world will be like when I’m 50, yet alone 94. I will truly miss sitting on her porch listening to her stories and talking about life.

My grandmother was the strongest person I have ever known and she made all of my family stronger.   Her strength inspired me to get through my scary times. Her humor helped me get through the sad times.  I was blessed to have my grandmother in my life for as long as I did.  Recently, I heard this phrase in a homily and it stood out to me, “the grace to cultivate gratitude”.   I believe my grandmother lived her last years cultivating gratitude. I’m striving to live that way.

My grandmother was always the educator.  Here she is reading two books at one time to Katie as a baby.

We had a roasted pig for our annual Preakness/ Katie Bday Party

Got to hang out with my good friend Andrew AKA Team Leader of Operation Coyote.

Girls got to see some of the horses at the Fairhill races.

Spring is here

I know it’s been awhile since my last post and a lot has happened.  This post will update everyone on my health. In January both my brain and body scans came back “no evidence of disease”.  It’s official, I’ve made it past the five-year date of being diagnosed! This has been my dream since I was diagnosed. The past five years have been the darkest yet joyous of my life.  It has been quite the rollercoaster ride and I’m still on it. I’ve learned to appreciate the views before the drops. Five years ago, I truly began living and learning about life.

Even though it has been five years, I still feel the roller coaster drops.  After my colonoscopy I vividly remember being told, you have a large mass, and then in the emergency department being told you have stage four cancer.  I recall my oncologist walking into my room for the first time and telling me, you probably won’t beat this.  I remember being told, you have a mass in your brain.  I’ve replayed those moments in my mind millions of times and I can still feel the emotions.  The one experience I can’t clearly recall is being told, there’s nothing else we can do for you.  I’ve tried and tried to remember the interaction with the doctor but I can’t replay it.  It’s as if it has been wiped clean from my memory. All I can remember about that moment is the doctor’s back walking out of the office and then looking at Janie and seeing tears in her eyes.  That moment was the biggest drop I’ve experienced so far. However, I can also relive beautiful moments from the past five years and I try to do that more often. Fortunately for me, there have been more beautiful moments than difficult ones.  

Countless times I’ve wondered  what my life would look like if I never had cancer.  What would my relationships be like with Janie and my kids?  How would my friendships be different? Would I have a relationship with God?  Would I still be in Maryland? For every struggle I’ve had that leads me to think I wish cancer never happened, I can think of a meaningful experience or friendship that wouldn’t exist if I never had cancer.  Most times if I’m thinking I wish I never had cancer, I’m in a bad place emotionally.

When reflecting on my life, I’ve seen how things have lined up for me.  I am not special in any way. I don’t know why I’m alive and so many of my friends with this disease have died.  I have no idea what the plan is or the direction of my path, but I know and have faith I’m on the right path. All of you reaffirm that I’m on the right path.  I’ve forged new friendships that have positively impacted me and my family. I’ve rekindled friendships that were lost. I’ve also strengthened friendships that were here all along.  

When reflecting on the past five years, the most important thing for me is that I’ve been able to see my children grow.  I’ve banked five years of hugs, kisses, smiles, laughter and cuddles. I’ve also had five years worth of failed ponytails, dressing them in bad matching outfits, painful hair-brushing techniques, been called mean and embarrassing, and have witnessed or have been the cause of many a meltdown.  I smile to myself because I’ve gotten to experience being a father to two amazing daughters. This is a gift I can never take for granted.

Also for five more years, I’ve been able to be a husband. I’ve been blessed to have Janie by my side. I know it hasn’t been easy.  When I think of what life would look like without cancer, often it is because I wish you never experienced this pain.  We made it five years and have forever to go. Happy Birthday.

Saint Justin the Martyr once said, “The greatest grace God can give someone is to send him a trial he cannot bear with his own powers- and then sustain him with his grace so he may endure to the end and be saved.”

So I guess I’ve been given the greatest grace God can give.  

Sad new, my friend Sara passed away after Christmas.  Often, we would research treatment centers from all over the world and share our findings and ideas in hopes of one of these centers having the answer to our cancer puzzle.   She was a great comfort to me and to so many others with cancer.  Please hold her husband and three beautiful girls in your hearts and prayers.

Anabel having fun in the snow yesterday.

Katie enjoying the day off from school.

Janie you are quite a lucky lady.  You didn’t marry the handsome neurosurgeon in the white coat nor the handsome neurosurgeon in the black fleece.  No, you married the stud in the middle. Happy birthday beautiful.  

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.

Me and Anabel one month after my diagnosis.  

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

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)                    

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

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/    

Risen Christ statue in Medjugorje

Hiking up Cross Mountain

Top of Cross Mountain

Kravica waterfalls in Bosnia Herzegovinia

Me and Janie in front of one of the falls

Laundry line towel races provided much entertainment

Anabel and her pizza

View of Split’s promenade from the water

My parents and the girls on the promenade

View from the castle on Hvar island

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

Anabel enjoying a frozen treat

Enjoying a swim in the beautiful Adriatic.

Blue Cave

The bell tower of Diocletian’s Palace in Split

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.

Our Easter pic

Wedding after party

Capt. Party and family

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.

My 93 year old grandmother, grandkids and great grandkids

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.