Through Her Eyes

Here is the chapter in my book Relentless Mettle – My Cancer, My Rules written by my wife. She recalls her perspective on my leukemia diagnosis.

As told by Mary Grace Brown.

In 2005, we had an extremely difficult year.  Steve’s dad was experiencing increased shortness of breath and after being evaluated, he was found to have a very large tumor in his right lung.  An 8 pound tumor was removed, and Dad did well immediately post operatively, but had many subsequent infections and spent all but one day in the ICU at Bryn Mawr Hospital between June 8th and August 5th.

Steve had a heart to heart talk with Dad, saying he would dedicate his 2005 Ironman race in Lake Placid, NY to him, and wore his WWII dog tags during the race.  This particular race was difficult for Steve but we all just assumed it was due to the troubling summer and interrupted training schedule.  We would later learn that his race challenges were actually something related to his health.

A few weeks after returning from Lake Placid, Dad passed away. A few months after that, Steve’s mom went into congestive heart failure and needed coronary artery bypass surgery and a mitral valve replaced.  The mitral valve was replaced twice. The whole family was exhausted come 2006 and looked forward to a new year of healing.

Steve had a recurring enlarged tonsil problem and was treated with Prednisone tapering doses and antibiotics on and off for a couple years.  Finally, after months of the tonsils touching and impeding Steve from swallowing even peanut butter & jelly sandwiches, Steve thought he would have them removed. We went to the ear, nose & throat specialist who agreed that they needed to come out.  Steve thought he would have the surgery at a time when triathlon training was slower, so a February surgery was planned.

I will never forget where I was when I got the call from Steve saying that the doctor called him and said, “Mr. Brown there is a problem with your blood work. You need to see a hematologist oncologist.”

I was driving by Delaware County Memorial Hospital in Drexel Hill Pennsylvania at the time of the call.  I thought to myself, “He has an infection!  He needs to get to the hospital!”  I called the oncology practice at DCMH and was able to make an appointment for Steve with Dr. Stephen Shore the next day.  I called our primary care physician and asked if Steve should get to the hospital.  He said, “No, but keep the appointment with Dr. Shore.”

We were in disbelief that it could be anything but an infection, which after blasting with antibiotics; he could have the surgery and get on with life.

Our daughters were in high school at the time.  We wanted to keep them in the know, but first needed to find out for ourselves what this was.  The first meeting with Dr. Shore was a whirlwind.  He evaluated Steve, and his blood work, and gave his initial thoughts of a chronic lymphocytic leukemia diagnosis.  This, of course would need to be confirmed with a CT scan, a bone marrow biopsy, and further blood work.  Steve was amazing during these tests.  As a nurse, I thought, no problem – I can handle being with Steve during the bone marrow biopsy.  Dr. Shore was very tuned in to my feelings. He saw I was getting queasy and invited me to leave the exam room and get something to drink in the office kitchen.  I felt horrible that I could sit with patients in the hospital during such a procedure, but I couldn’t with my own husband.  Dr. Shore assured me that it is different when it is your family member and not your patient. I appreciated how Dr. Shore and the whole staff at his office treated us with such care.

At one point, however, Dr. Shore told Steve he would have to put ‘all that training and intense exercising aside’.  Steve assured the doctor that if he took away his fitness regimen he would be dealing with a lot more than just leukemia.  It was nice to see that Dr. Shore was able to meet Steve in the middle and encouraged him to listen to his body for cues as to when to rest and when to work out.  On a funny note, when Dr. Shore asked Colleen at his office to schedule his diagnostic tests, he told Colleen that Steve spells Stephen the right way….with a ‘PH’.  That’s something that Steve  has always been very adamant about. His name is NOT spelled with a ‘V’. My husband and Dr. Shore had and continue to have a wonderful way of communicating and sharing a laugh at just the right times.

The day Steve and I met with Dr. Shore for the official diagnosis was February 24th.  All test results led to a chronic lymphocytic leukemia diagnosis.  We were able to somewhat prepare for this through the week, but hearing the confirmation news was tough.  We went ahead and scheduled the chemo treatments.  Dr. Shore told Steve that this disease is not common in people Steve’s age, and there isn’t a lot of data available to give an estimation of survival rates.  Steve assured the doctor that he would set the bar for future estimation rates at a high level.  He was determined to beat this.

Leaving the office, we looked at each other and asked, “Now what?”  I said, “Let’s go see Dad.”  There is a bench overseeing the playground at the Veterans Memorial Park in Broomall Pennsylvania that was dedicated to Dad’s honor.  Steve was able to sit on the bench, stare at the bench, walk around the bench, walk around the park and I did my best to keep up with him with my short legs.  He turned around and hugged me – I cried – he said, “I feel worse for you that you are going to go through this”. Wow – for him to say that made me cry harder. What a special moment.  He didn’t think of himself, but for me. Then Steve ran fast and hard up a steep hill in the park and let out a huge battle cry. He came down and we hugged again, saying we were ready to do this together. And the next plan was to tell our daughters Jennifer and Danielle.

We picked up the girls at Upper Darby High School.  They suspected something when Steve and I both showed up.  I was a visiting nurse and had some flexibility in my work day. So it was common for the girls to see me, but not both of us. Steve worked in Delaware and was rarely around at that time of the day.

We rested on the couches at home and Steve, in his very positive, very upbeat way, told the girls he had a blood condition that needed treatments – he was not sick, but had a condition that needed treatment.  The girls looked to me and said; now you can tell us what this is.  They knew it would come a little more realistic from me, given I work in healthcare.  I told them the condition is leukemia – which is a cancer they both stated.  I agreed, and also emulated Steve’s commitment to fighting this and staying positive.  Jennifer and Danielle had a look of ‘deer in headlights’ about them and needed to process the information, but they also decided to follow Steve’s lead and stay positive during his fight.  I was so proud of them and how they rallied behind Steve.  There were tearful moments, of course, but they were so strong.

We next told Steve’s sister Chris, who immediately stopped over with a bottle of Merlot. Then we talked to Steve’s mom, as well as my parents and then had a meeting with my siblings.  I am the last of 7 Snyder children. My brothers and sisters decided to have a combination birthday and cancer fighting party, as Steve’s chemo was to start the next day. It was a great day of feeling united, supporting Steve and resolving to fight this together.

I bought Steve a laptop for his birthday, initially because I knew the original ‘tonsillectomy’ surgery would have driven him crazy and the laptop would give him the opportunity to journal and continue to write for the online triathlon magazine he was involved with.  He reached out to his long time race director friend, Rob Vigorito, and brought him up to speed. Rob was connected with some prominent physicians at the University of Maryland’s School of Medicine who took a look at Steve’s blood work and confirmed that the treatment plan for Steve was appropriate.  Rob was so instrumental in helping Steve with this new challenge.  It seemed like triathletes came out of the woodwork and reached out to Steve.  I heard Steve say that they told him he had very long tentacles in the community he doesn’t even know about.

One day Steve opened his laptop to Rob’s website and saw the Leukemia & Lymphoma Society Team in Training logo and had his ‘ah hah’ moment.  He reached out to the local chapter’s triathlon coach, Todd Wiley, whom he knew and looked up to as an amazing triathlete.  Todd welcomed Steve into the LLS TNT family of coaches and Steve has been helping train triathletes ever since.  I will never forget the first practice Steve attended. He was tearful when he came home, stating how he is helping people reach their fitness goal of completing a triathlon, while they were raising money to fight his cancer.  It was such a wonderful feeling.  “A win-win situation”.

During treatment, Steve had many phone calls, emails, and visits from people in all areas of his life: family, childhood friends, fellow athletes, college buddies, neighbors, all showing their support. Steve decided early in treatment that he would take control and run home from chemo to show cancer that it cannot win. He used visualization imagery techniques such as imagining the cancer cells falling off his back as he ran away from them, leaving them in the dust.  Steve was smart on the days he didn’t feel well or had a fever, and let me drive him home on those days (and I was thankful).  Our daughters went to high school right next door to the chemo suite and they made sure to visit on chemo days.  We were pretty sure they were skipping classes to do so, but there was no stopping them anyway.  They added so much laughter and fun and the nurses made them feel right at home. Every now and then they would ask me his prognosis, but I could only honestly answer them that this is chronic, there isn’t a cure yet, and we have to make the best of what we have.

One evening we had a visit from my cousin Sharon and her husband John.  They sat quietly and prayed. Holding hands, we truly felt the presence of Jesus Christ in the room, channeling through our bodies.  Even our dog, Chelsea, had an unusual calmness about her.  We sat and listened to very moving stories of faith and how Christ worked through people to bring about healing in many circumstances.  It was a moving, life changing visit.  Shortly after their visit, one of the enlarged glands in Steve’s abdomen reduced in size – and this was one of the more stubborn ones.

Our brothers and sisters brought dinners to the house on the long chemo days.  My brother Johnny was a school teacher in Philadelphia and his students wrote cards to “Mr. Steve” that were both touching and funny.  One of the cards read, “I’m glad you didn’t get dead”.  We could only laugh at that but were moved by the sentiment that this child wanted the best for Steve.  “Mr. Steve” was then included in the daily prayer at Johnny’s school.

Many people prayed for Steve, Jennifer, Danielle and me.  These were so appreciated, and got us through.  I truly believe prayer is so powerful and can get you through the toughest of times and situations.  We were so thankful for our faith and the faith of others in helping us cope.

Steve was given the awesome news after 3 months of treatment, that he hit remission.  We were so thrilled!  Steve asked for the 4th month of treatment to be skipped all together but we were assured it was necessary to keep the leukemia at bay. We started a little happy dance outside the doctor’s office that day.  And we still do it after each visit before taking the stairs (NOT the elevator) back down 5 flights to the

lobby.

Steve participated in a short distance triathlon in June, and then a full iron distance triathlon in September of that year.  WHAT?!!! He had chemo in June and then did an iron distance triathlon in September?  YES!  And the family was present at the finish line after Steve completed the 2.4 mile swim, 112 mile bike and 26.2 mile run.  The race director, Rob Vigorito, gave Steve the new name REMISSIONMAN.  Not a dry eye was at the finish line, or at the awards brunch the day after.

For the following two years Steve had to take maintenance treatments for one week every six months.  In 2012, the leukemia decided to show symptoms in Steve and he was again treated and back in remission. In 2013 he had another need for treatment rounds and responded well.  When the symptoms first returned, we were understandably sad. It felt like a thousand punches in the stomach.  We thought that there was a good chance this wouldn’t come back.  But we are so thankful that there are treatments for this, that there are newer drugs being discovered every day, and that doctors and nurses know exactly what to do and how to help Steve fight this.

We have learned over the past 9 years how a diagnosis as horrible as cancer can pull people together in such loving, positive ways.  Our friends and families are there for us at all of our fundraisers, and come up with creative ways to help raise money for the Leukemia & Lymphoma Society, as well as organizations such as the Livestrong Foundation, Headstrong Foundation, and the Team Inspiration Community – who are all committed to finding cures.

Steve knows how much cancer ’sucks’ and living with it can be so hard at times, but he looks at it as a blessing in a way. This experience has brought so many people together in a positive way with a good goal, leaving a feeling of connection and love.  He often speaks to large groups and talks about how people get ’stuff’ and it is important how you react to the ’stuff’ so you don’t give it the power.  Steve also is trained to outreach to people who are newly diagnosed with leukemia or lymphoma.  I usually know when he disappears into another room to call someone, and when the call is finished, Steve has such a look of peace about him.  Helping other people really gives him joy.  It is his chocolate.

As hard as it may be at times, it is difficult to find a real reason to complain. I have a super positive, super energetic, super loving, super crazy (at times), super relentless husband who will not let this bring him down.  This has bonded us closer than ever.  He made it easier for us.  And so did the grace and blessings from our relentless God.