Lessons From The Chemo Lounge

During treatment for Hodgkin’s Lymphoma, I often would jot down notes in a journal my daughter sent me as part of a care package.il_fullxfull.150203272

 Here are some of  the notes I made. They are my keys to living a happy and meaningful life.

1. Life is not a passive verb. Get off your butt and do something that YOU want to do.

2. If you’re drowning in the sea of life, follow the path of the dance band on the Titanic. Just keep playing. A life boat is on its way. If it’s not, at least you’re having a good time.

3. If you love someone, do so unconditionally. Don’t judge, don’t take them on a guilt trip, don’t second guess their motives and always trust them unless they give you cause not to. Remember, your insecurities are yours, not theirs.

4. It is better to understand than to be understood. It’s ok to have the people you cherish try to “understand you,” but don’t hold it against them if you don’t communicate well. It’s not your fault, though, if they don’t try to listen.

5. Smiling at friends and strangers alike is a great way to combat depression. So is laughing inappropriately at the oddest times.

6. The beach and woods are sacred places. Both also are great for certain “recreational activities” of an NC-17 adult nature. But please, be discreet. I don’t want to see you naked any more than you want to see me.

7. Listing three things every day that you are grateful for is empowering.

8. Taking a minute to look at the warmth of afternoon sunlight brings you moments of peace and awe.

9. Every setback is a chance to redefine yourself in the way YOU want. So is every victory.

10. You’ll never have all that you want. It’s better to want what you have, no matter how little it may be.

With that, I’ll leave you today with one simple thought, courtesy of my friend, Chuck Eckstein.

No matter, just keep on breathing.

The Uncalming Quiet of Surviving Cancer

By Stephen Wissink

Today is an important anniversary for me, but I’ve yet to find a greeting card suitable for the occasion. Not that I blame the writers at Hallmark. Even I find it difficult to express the range of emotions that continue to strike when I least expect them: gratitude and guilt, fear and fortitude, anger, anxiety and acceptance.hodgkins_lymphoma_survivor_grunge_winged_emblem_mousepad-p144973624733271498envq7_400

Two years ago today, I walked out of the Cancer Centers of North Carolina. It had taken 19 rounds of chemo, 27 visits to the radiation lounge, three blood-plasma transfusions, scores of pills and dozens of shots to kill the diseased cells and generate healthy ones, but I had won.  I joined the ranks of those of us lucky enough to have been paroled from the grips of this monstrous disease.

“I have a new lease on life,” I thought as I walked to the car in a light drizzle on a cold day. “But I am so lost.”

At that moment, I felt more fear than the day the doctor confirmed what I already suspected.  Hodgkin’s Lymphoma. Stage 4.  A lump the size of golf ball protruded from my left arm pit and cancerous cells were taking over my spleen, the vessels up my neck, both kidneys and the fluid around my heart.  I had lost close to 80 pounds and resembled a stick-figure drawing of Caspar the Ghost.

When I finally heard the official diagnosis, my fear actually turned to relief as the medical team outlined a treatment plan. Yes the coming months would suck, but they assured me Hodgkin’s was curable and the survival rate was extremely high. A certain confidence developed as we talked over a plan of action and I could envision the elation I would feel on day I was cured.

Lots of people cheered me on, doctors, nurses, social workers, coworkers, family and friends. One of my customers – I worked for a cell phone retailer at the time – would pop in unannounced with a cup of Starbucks and a pastry. A friend from a prior job took me to lunch several times at the city’s better restaurants. Cancer survivors would notice my bald head and pasty pallor and offer words of encouragement. My daughter mailed care packages, my mom called daily, and my ex-wife would invite me over for dinner a couple of times a month.

Even a simple Facebook post declaring, “No work, no chemo, no doctors, no hospitals, lunch with a friend and uploading new pics of my daughter. WHAT A GREAT DAY!” generated dozens of uplifting responses.

I often said getting cured was easy. My only job was to show up, let the medical experts administer the drugs and turn to friends and family when I needed support.

Abruptly, on that cold January morning two years ago, it was over – and someone apparently forgot to schedule the parade.  The simple act of breathing no longer was a reason for others to cheer and I felt the same sense of uncertainty that long-term inmates must feel when they walk out of prison and wonder whether they can deal with life on the outside.flags

“Once you finish treatment people start moving away from you because they assume you’re fine now,” says Susan Nessim, author of “You Can Survive: Reclaiming Your Life after Cancer.” But it’s not that easy. Many of us are not prepared for the fact that everything isn’t going to be the same.”

There’s the fear the disease will come back, which in turn can cause emotional paralysis and cast a cloud on even the most joyful moments. It’s a condition known as “Damocles Syndrome.”   Greek legend tells the story of Damocles, who, once he realized there was a sword dangling over his head, could no longer enjoy the banquet before him.

Then there’s survivors guilt. I try not to dwell on why some people live and some die, but these thoughts manage to creep into my conscious thoughts, particularly when the lives of children end. I think of the 7-year-old girl, bright eyed and bubbly, laughing because neither one of us had hair. She gave me a piece of candy and we took a minute to color while waiting to see the doctor. I later learned she didn’t make it and I still kick myself for not taking a moment to write down her name.

Some liken the shock of survival to PTSD, the psychological disorder war veterans have when they return home from the nightmare of combat.  Readjusting to civilian life can be too overwhelming to manage.

At the annual Caring Community Foundation fundraiser. The group provides financial assistance to low-income cancer patients.

At the annual Caring Community Foundation fundraiser. The group provides financial assistance to low-income cancer patients.

“Partly, I think, I’m grieving for the person I was before I learned I had cancer,” Dana Jenning, a survivor of prostate cancer, wrote in the “New York Times:”  “Mortality is no longer abstract, and certain innocence has been lost.”

Renee Silverfield is a breast cancer survivor. In reviewing “Dancing in Limbo,” a highly acclaimed book on the transition from victim to survivor, she writes, “After reaching remission, you think cancer patients would be able to quickly return to their ‘pre-cancer’ self. I can’t speak for everyone, but I have never found the person I was before cancer. It’s almost like I have my ‘before cancer’ life and my ‘after cancer’ life.

“Before my diagnosis, a headache was just a nuisance.” Silverfield writes. “Now, it is a possible brain tumor. When my son gets a cough, I don’t even think it could be a cold or the flu. I instantly start worrying about lung cancer. It is terrible to be this way, and I wish I wasn’t. However, it is not something I can control.”

Yet I am still on the planet and do what all of us do to survive.  You’ve seen the bumper stickers and heard the pep talks.  “Suit Up & Show Up. “ “Keep On Keepin’ On.” At the center of life, these words, I’ve found, are true. I work, play, laugh, cry, celebrate the little victories and mourn the inevitable losses.

So, OK, my feet scream in agony with every step due to nerve damage caused by chemo. Yes, I’m not as bright as I used to be. Chemo Brain is a reality, not just an insult hurled by teenagers. Breathing can be difficult, but I’ve come to realize every breath is precious.

In the past two years, I’ve started rebuilding my career, searching for the right words to write, learned to live in the moment and have come to truly value the importance of a kind word or deed.

I marvel at the accomplishments of my daughter, the “mad scientist,” as I call her, who is earning a doctorate at Cornell. Not only is she smart, she’s physically tough; last year she rode 100 miles on her bike for a fundraising event. Now, she lifts weights and runs.

Last fall, I met the love of my life, Andrea, a very strong and courageous woman who’s overcome more hurdles than an Olympic medalist and stared down many a challenge that would have crushed others. She provides a great sense of optimism and keeps me laughing hysterically at the craziness of people in the day-to-day world.  We’re planning an outdoor wedding this fall when the leaves are red, the wind is crisp and the afternoon sunlight glows warmly. Even if it rains, the day will be perfect.

Two years ago I posted on Facebook that treatment had ended.

“As I leave the treatment center for the last time, my thoughts are with you, the ones who helped me so much. From ‘Frisco to Ft. Lauderdale, from Detroit to Dubai, from the Windy City to the Big Apple,  every good thought, prayer and word of encouragement has meant so much to me. Fighting cancer can be lonely, but I never felt alone. Thank you. You are all wonderful people. Life is moving ahead in ways I had never planned.”

Chuck Eckstein, an old friend from my party days in South Florida, was among the many who took a moment to post a reply. “Fresh air, in its many forms, is a wonderful thing,” he wrote. “Keep breathing in, my friend.”

Like everyone else, that’s what I do to keep moving forward, one step at a time. One breath at a time.

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