Ich bin klein

The memorial for my grandmother was held today. She asked us to remember a German prayer, which she taught all of us as children. In English, it means, "I am small. My heart is pure. No one shall dwell in it except Jesus alone."

50 Miles for 50 Days

One year ago, on May 5^th, 2011, we cheered my wife's accomplishment of pushing herself to walk 14 laps around the nurse's station outside her hospital room. Nine days later, she came home to us. On May 5th, 2012, I plan to push myself in her honor.

Shelley's story started with a routine, 20 week ultrasound for our daughter, Lily.  The checkup kicked off a series of events that led to her diagnosis of and treatment for acute myelogenous leukemia (AML).  The grueling hospital stay entailed chemotherapy, blood transfusions, hundreds of needle pricks, fevers, mouth sores, and intense nausea.  That’s the short list.  The only time she left her room for an extended period of time was to spend Easter Weekend in the Intensive Care Unit to battle bleeding in her lungs and a blood clot in her liver. 

We said goodbye to Lily during that time. 

Nearly 50 days passed between the ultrasound and her departure from the hospital.  During this time, Shelley endured each blood and platelet transfusion, needle prick, and treatment protocol with the steady calm of a person looking beyond the hospital bed and the oncology floor with the thought, “I will get through this.”  Maybe her attitude came from the years of mental and physical conditioning for competitive swimming.  Maybe it was a combination of her inherent character and the invisible hand of her parents that taught her to never give up.  Likely, a combination of many factors built her deep resolve. 

Her fight during her hospital stay--and now during her maintenance treatments--is inspirational. 

On May 5^th, nearly one year from my wife's departure from the hospital, I will participate in the 50 Mile Northface Endurance Challenge ultramarathon at Bear Mountain, NY, to both raise awareness for Leukemia and raise money for research.

50 miles: nearly one mile for each day before Shelley achieved remission status.

May 5^th: nearly one year from the day she left the hospital. 

Although the race is called an “endurance challenge,” the endurance required to complete the distance is immeasurably small when compared to the endurance of body and spirit my wife exhibited during that time and the treatments since.

She is why I wear orange.

To donate to the Leukemia and Lymphoma Society through Shelley’s Light the Night event Life's a BeachTeam Page: Shelley's Light The Night Team Page

To learn more about the 50 mile race: North Face Endurance Challenge Ultramarathon

Denial Ain't a River in Egypt...

In my case, denial appears to be taking the form of a lake--Franklin Lake.

I've signed up for a 2.4 mile open water swim race in June. A year ago, when my mom and Ryan brought me home from the hospital, I was too weak to climb the two stairs from our garage into the house. I've come a long way in a year, but 2.4 miles is still ambitious, particularly since my next ATRA treatment, May 7th - 22nd, will undo any training progress I make before then.

So why have I signed up? Because, like I said, I'm in denial.

Or maybe because I am sick and tired of feeling sick and tired.

Or because it's a way to start strengthening my heart, of which I've become overprotective. Cardiomyopathy (hardening of the left ventricle of the heart) occurs as a latent side effect in 3-5% of patients who've received their "lifetime limit" of anthraycline chemotherapy.

Whatever my rational happens to be on the day of the race: the water will be cold; there will be lots of kicking and shoving; a plethora of professional Ironman triathletes will leave me in their wake; my body will cramp up; and I will love every minute of it. Because it will be good pain. It will be living.

If anyone would like to join in 0.5, 1.2, or 2.4 miles of fun: Open Water Swim Registration Form

Grandma

My grandmother passed away last night. It doesn't feel real. She was a fighter, a survivor. Throughout her cancer battle, she had an amazing attitude that I tried to emulate.

I will always remember her as a grandma who let me eat my Rice Krispies with whole milk and sugar on top; who gave me exactly what I wanted for my birthday; who loved taking her grandchildren to Disney movies.

This past year gave me a new perspective on her. Through our similar circumstances, we became closer. We were each other's cancer confidantes and cheerleaders. She was so brave and determined. If attitude could cure cancer, she would be in remission now. Her final gift to me, better than any toy I'd longed for as a child, was her example of how to focus on what you can control, and ignore the rest.

A few months ago, she mentioned how delicious the hot chocolate at the cancer center tasted. Before each  doctor's appointment or treatment, she would buy a cup of it. It was too hot to drink right away, so she would let it cool down during her appointment, thus having an indulgence waiting for her once she'd finished the unpleasantries of cancer treatment. She had managed to find and focus on the positive.

The term "survivor" connotes winning. Grandma may have lost her battle, but I believe she still won. She lives on both in heaven and in the hearts of her four children and their spouses, 11 grandchildren, six great grandchildren, second husband, and many friends.

"You Have Leukemia."

A year ago today, a nurse in the ER told me there was something wrong with my blood and they were relocating me to another wing of the hospital. Six hours later, Dr. Sharma told Ryan that I had acute leukemia. Then she told my parents over the phone.

A year later, I am in remission. This morning, Katelyn and I participated in an egg hunt (or as Katelyn calls it, an "egg plant"). Last year, I was in the hospital during Easter. Ryan had set up our laptop, with Skype, in the backyard, so I could watch Katelyn and my mom hunt for eggs. He also recorded the hunt on video. It's Katelyn's favorite clip. At least once a week for the past few months, she has requested to watch it. So I've been hearing my shaky voice commenting on the locations of the eggs, and seeing glimpses of my bald head and sick complexion when the laptop happened to appear in the video.

This morning, my voice wasn't shakey, and my complexion didn't look sick (just pale). As we gathered at the gate of the playground for the start of the egg hunt, my mom was crying. I told her, "No time for tears now. We need to be focused." When the whistle blew, Katelyn and I sprinted to the far side of the playground (less competition since most of the children go for the closest eggs). Once we filled her basket, we began helping another little girl, who was overwhelmed, fill her basket.

Now that the hunt is over, and we are done enjoying the moment, there is time for tears. Thinking about the past year is difficult. We feel so happy I am getting better, but at least I (and maybe secretly others) still have so much fear. And my grandma, who was diagnosed with kidney cancer within weeks of my AML diagnosis last year, is very ill. She is ready to go to heaven. We do not want her to be in pain, but we will never be ready for her to go. I have not been posting much on this blog in recent weeks because anything I could write seems inconsequential to her battle.

So it is a mixed day. I swam competitively for 15 years, and a swim right now seems like just the thing a doctor would order.

One Year Later

A year ago today, Lily's heart stopped beating, and the rest of our lives changed.

This morning, Ryan dropped me off at the edge of Central Park, and I walked to work, enjoying signs of the season I missed last year. And thinking about that ultrasound appointment. Thinking about Ryan, Katelyn, my parents.

My parents flew in to support us after we lost the baby, before we knew I was sick. That's just how they are. Always there for us. I know they made several trips in the weeks that followed my diagnosis. I don't know how many. I have blurred memories of them sitting next to my hospital bed. I wish they'd been walking through Central Park with me this morning, though at least I will see them tonight.

Today is the first in a series of one-year anniversaries. Sunday will mark one year since a doctor first told me something was wrong with my blood. Next Saturday will be one year since my diagnosis. Each of these one-year anniversaries will stir traumatic flashbacks, but also good memories.

Today, I'm thinking about all that my parents did for me last year, and feeling really lucky to have them.

Coping Through Creative Expression

 

Originally posted on Curetoday.com, the website of CURE magazine, a free publication for cancer patients, survivors and caregivers. Also posted on Stupidcancer.com, an online support community for young adults affected by cancer (15-40), which is sponsored by The I'm Too Young For This! Cancer Foundation.

Fear can be one of cancer’s most debilitating side effects. Sparing no patient, survivor, or caregiver, it is also the most common. Medical professionals, faith, and loved ones can help you manage anxiety. So can a colored pencil, bottle of glue, or keyboard. Art therapy provides a mechanism for working through difficult emotions and reducing stress. Regardless of how well you can draw a stick figure or write a haiku, creative expression can bring you comfort.

Many young adult survivors have turned to art to restore their sense of optimism and passion for life. Chris Ayers, an artist working in Hollywood, began a project he calls, “The Daily Zoo” on the one-year anniversary of his acute myelogenous leukemia diagnosis at age 29. As part of his recovery process from a bone marrow transplant, he set the goal of drawing an animal a day for one year. The result: a published anthology of rhino plumbers, alien possums, and much more called, “The Daily Zoo: Keeping the Doctor at Bay with a Drawing a Day,” which was followed by Volume  II—a second year’s installment of drawings. Will Reiser, screenwriter of “50/50,” is another high-profile example of a young adult cancer survivor who used comedy to come to terms with his traumatic experience, as well as to move forward.

Creative expression as a healing mechanism does not require talent. The only prerequisite is the willingness to face your fears. There are many paths for exploring the complicated mess of emotions that cancer causes. Cancer blogs have become a common means of therapeutic expression, with readers can able to offer encouragement via the comments function. YouTube and other video sharing services provide another medium for expressing oneself.

Transformative writing is a powerful strategy, which I’ve been practicing since my diagnosis with acute myelogenous leukemia in April 2011. My blog is entitled, “Shelley’s ‘Life’s a Beach’ Blog.” The Our Story page concludes with the thought: “As I wrote in my first post, life can be a b*tch, but we must always remember what a beautiful beach it is too.” The first drafts of many of my entries were much darker than the final posts. By reworking my thoughts into a version that wouldn’t terrify my family and friends, I lessened my own fear. Iterative writing can transform the worst of thoughts: “I’m going to die,” into “I might die,” into “I will survive.”