Sad and Beautiful
By James Kraus
I’ve been blessed with excellent, energetic health. As a kid, my parents named me “the explosion on legs.” Although lacking competitive tenacity, I participated in many sports and outdoorsy activities. Most recently, working out regularly, yoga, dance classes, and most enduring of all, bicycling.
I rarely get colds, don’t think I’ve had the flu or Covid. Friends and medical professionals were surprised I’ve never been on medications or hospitalized. I still have my tonsils. I don’t have any allergies. I brag I’ve never thrown up.
At sixty-two, my work was physical: handy man/construction work, large gallery deinstallation/installation, moving/transporting fine art and furniture. I’d often bicycle nearly an hour to jobs with a 30-40lb backpack of tools. Mid-March 2023, I passed a full physical with flying colors. March-April, 2023, I worked 8-12 hours seven-days a week. After which, I was beat. I relaxed and slept like crazy, but never recovered.
Friday, May 5, 2023, while riding my bike to Boston College for my weekly radio show, I couldn’t catch my breath on slight inclines and coasting downhill. Near BC, I confronted the Beacon Street hill paralleling the Boston Marathon landmark, Heartbreak Hill. I couldn’t go on. I managed to walk my bike up the hill and star the show just in time. My voice was faint, raspy. I told listeners about my adventure. Folks posted their concerns. I aired appreciation and terror.
During the show, I scheduled a doctor’s appointment that afternoon. Pedaling to his office, my breathing was worse. A nurse said my vitals were perfect. A young nurse practitioner ordered an EKG - also perfect.
I said I feared cancer. This situation was like nothing I’d experienced. Cancer I knew. Both my parents succumbed to the disease. The NP listed a slew of other possibilities: heart, lungs, thyroid, but ended saying, “When we get older, our organs don’t function like they used to. This could just be a case of getting old.”
I fired off bewildered indignation. How could I go from extreme physical activity and two-weeks later this may be my life. He replied, “It very well could be.”
Monday morning, a nurse called. Severe anemia.
Over the next ten-days, my condition worsened. My third floor apartment was near impossible to reach without breaks. I slept far too much. I became spindly, shaky. White-outs were common. A morning call to my doctor brought orders, “Get a ride to an ER, soon.” At Beth Israel by noon, I was admitted immediately.
Stuck, poked, hooked to sensors and an IV drip, the doctor probed a gloved finger and held it to my face - a dark residue indicated digested blood in my stool. I said it’s cancer. She said she suspected internal bleeding from an ulceration or esophageal tear. Easily fixed. At my age, a common diagnosis. Again, the age thing!
Around midnight, I was transported to the GI unit. Being a life-long loner, a truly single man, the beeping equipment, bright lights, smells, yelling, my roomie’s 24/7 blaring TV, constant required interruptions and tests were overwhelming.
Sustained only on that delightful, salty, citrus colon evacuating beverage I needed to drink every 15 minutes. I got no sleep.
In the morning, I met the wonderful Dr. “Bird” who introduced himself with an adorable lie,
“I’m looking for Mr. Kraus?”
“That’s me, doc.”
“You sure? I’m looking for a 62 year old anemic man. I’d say you look 45 and in good health.”
“That’s so not true but I’ll take it.”
Dr. “Bird” echoed the ER diagnosis; a bleeding ulcer or tear. Again, I said I suspected cancer. He, like my nurses, implored me not to get ahead of myself. “You’re in excellent health and spirit. It’s likely minor. You’ll be home in a few days.”
Two-and-a-half days passed. My bowels never ran clear. Likely a GI tract lined with dried blood. Regardless, a colonoscopy and endoscopy were performed.
Later that day, Dr. Bird returned.
“Ya’ look a little dower doc. What’s up?”
“You were right. You have cancer.”
“No? Really?”
“The endoscopy found an extremely large, oozing, bleeding esophageal mass.”
Instantly, time ground to a crawl. Although in a fog, every sense and detail felt ultra-vivid. I couldn’t fix on any point. Cross-legged on my bed, I rubbed my thighs, rocked back and forth, blurting out a barrage of a lifetime’s questionable, suspect, indulgent behaviors. Dr. “Bird” tenderly suggested avoiding such questions. “No one knows how or why you got cancer.” A CT scan would answer what extent and stage.
Dr. “Bird” left me with sage words, “I know it’s shocking but excellent health masked your illness and excellent health will help you fight this. Also, James, it’s now your time. This is the time for absolute honesty. Stay positive. It’s as powerful as medicine.”
Once alone, I cried intensely fueled by fear, guilt, shame and regret. Projections of my parent’s treatments and (perhaps my own) ugly demises played in my mind. I lamented and rued what was, what may have been and what may never be again.
I halted my three-hour pity party choosing to earnestly meditate. I hadn’t done it in days. Deep breaths summoned the universe’s guidance. The answer. What about those twelve steps that brought nearly 10.5 years of sobriety? Could they help navigate this new disease that indisputably wants me dead?
Step 1: I have cancer. That won’t change. I must manage this new life, treatments, appointments, emotions, who I tell, their reactions. Although powerless over cancer, I had true power in my choices for coping and care.
Step 2: I must trust in life’s generous forces, a power beyond me, to let go of self-will, keep sane, serene, and believe I’m cared for.
Step 3: I turned my will and life over to g_d’s care. I vowed not to play Google doctor. Trust the process. Like “Southie” AA old-timers say, “Yuh right whaya’ otta’ to be, kid.”
Step 4: I must release and resolve resentments against cancer, doctors, the medical field that missed this, fate and, hardest of all, myself for allowing this to happen. Chastising myself or other’s faults helps no one. Grab a feather not a bat.
Step 11: Through prayer and meditation, improve our conscious contact with God.
I recalled in 1981 my father gave me a book while grappling with late-stage Leukemia. Rabbi Harold Kushner’s When Bad Things Happen to Good People.
In 1939, my young father and grandfather fled Nazi occupied Prague. All family that stayed perished. A highly respected genius engineer but a troubled and depressed atheist, my father was regularly lauded as a good honest man. Why did g_d give him cancer while evil people thrive? For that matter, why me?
I found a YouTube video of Kushner speaking in 1984. He said g_d doesn’t play games or push buttons, selecting who’s stricken by illness. G_d does’t test people or give them “only what they can handle.” Nature’s laws don’t recognize good or bad. A rock fell from a mountain and hit me. It doesn’t wait to fall and strike the deserving. This is “unquestionable biology.” NOT g_d’s plan or punishment.
Kushner assured g_d isn’t a genie, slot machine or ATM granting wishes, dispensing jackpot miracles. He declared, “Don’t pray for miracles. They won’t come. But pray for strength and faith and watch miracles happen.”
Step 12: It’s said in AA, application of the first eleven steps brings a spiritual awakening. After walking my diagnosis through the steps, I believe I had another spiritual awakening. I had tools, coping skills. Even a committed loner like me isn’t in this alone. I vowed to strive for positivity. Ask for help. Express sincere interest in those along side me. Hear their stories. If asked, share my story. Stay upbeat. Laugh often. Continue being humorous, trusting, pray, meditate - believe.
I had a plan: Don’t default into self-pity or obsesses over myself and situation. Accept the staggering vulnerability, my neediness and the challenge of admitting my condition to others. My fear of being seen as a vicim, sick and dying.
For two days, I felt upbeat, buoyant. Dr. “Bird” arrived with my CT scan results. I anticipated good news.
I couldn’t have been more wrong. Stage IV esophageal cancer. Highly metastatic in my liver, affecting several lymph nodes and innumerable tiny nodules on my lungs. I was gone. Unmoored. A million miles from shore. Lost at sea.
Tears rained down. I asked Dr. “Bird” to see the scan, situated backward on a chair - shins on the seat, arms propped on the back, rocking in a weird genuflection. I peered at the computer monitor. We took a frightening, ugly voyage through my gut.
For two days, leading to my release, nothing distracted me from looming death as palpable, pervasive and deeply rooted as my cancer.
A friend drove me home, and stayed while I ate yummy fish tacos. It eased my re-entry disorientation. Once alone, my home of nearly 40 year was bittersweet relief, familiar yet alien. I weirdly missed the hospital and nurses - my doting angels.
Days later, I answered an indelible call from a devoutly spiritual friend, Stella. I shared my diagnosis. To my surprise she revealed her husband had bladder cancer and was responding well to two-years of treatment. “James! You in the light and spirit. I’m gonna pray hard but I don’t think the universe is done with you. Uh, uh. You’ve gotta lot more to give to this world.”
June 8th, my home drive friend overcame unease, we met my oncologist, Dr. B. We totally clicked. A practicing, spiritual Jew, our belief in prayer, faith, and humor synced. I adored our witty meandering banter that seamlessly switched to professional communication about the “mass” (“It’s gross, right? I don’t like it.”), relating details (“It’s incurable. Remission is miracle status. But, I’ve seen miracles happen.”), the chemo and immunotherapy potions and unfathomable regimen. (Every two-weeks. Two hour in-clinic immunotherapy, then forty-six hour home chemotherapy infusions - until July.)
I requested my prognosis, “I’m not sure I want to say. I could have five doctors here, with different opinions.” My mother exceeded her three month prognosis by fifteen years so I pressed for the number. “Three years. The last year will be hell.” She urged, recoveries are unique as fingerprints, a positive mindset and gathering prayers are good as medicine. “When you’re back on the bike, you send me a picture.” The encouragement and support from her, my friends, the steps, my plan, I felt ready for treatment
But, June 15th, I woke with awful calf pain. I was shaky. Scrambling eggs was exhausting. I was a back at the ER. This time for 2.5 days. CT scans and ultrasounds exposed extensive leg and pulmonary thromboses - just like dear old mom.
On Riesman’s oncology wing, I “vacationed” for five weeks. Doctors talked about removing half my liver, part of my stomach and the mass I insisted be called “Bleedy”, to their dismay. But I was too unstable. Bleedy kept bleeding. There were so many conversations about tests, transfusions, and prognostications. I was sick of talking about me. The boredom!
I greeted other patients, and, if willing, roommates and I shared our journeys. Often harrowing, prophetic tales. I often circumambulated the oncology wing, spying glimpses of a potential dark future. Families gathered in final moments. I implored nurses to sit, tell stories about their lives, dreams, show recommendations, new puppies, loves, a new engagement ring. I heard nurses jockeyed for me to be their patient -“ the happiest cancer patient ever.” When asked how I could be so positive, I replied, “The 12 steps of AA! Everyone should do them.”
Despite trying to stay positive and make connection, I didn’t comprehend I was in danger.
Due to a Covid outbreak, I was moved into the solarium. I reveled in the quiet, two walls of windows, an expansive view of transport helicopters. legendary soaring hawks and sunsets.
Two weeks later, I fainted returning from the hallway bathroom. I was incontinent on waking up. I hid my face under a pillow and alerted my nurse about fainting. As she pulled back the sheets for cleanup, she gasped. I’d released mainly blood. A rush of staff attended to me. I was clinically unstable, near dead. I recently reviewed my medical records to discover I was on death watch that entire hospitalization.
Five more transfusions later, I was told radiation would begin. Immuno and chemotherapy treatments started immediately after my fifth and final radiation round. I was knackered and moaned to nurse Francie, “I’m so lazy. All I can do is lay here and sleep.”
She implanted my rally cry, “Ya not lazy! Ya fightin’ can-suh.”
Slowly, ”Bleedy” stopped. I started to feel “good” and was released. Visiting nurses checked my condition and disconnected me from chemo. Friends helped me shop and treated me to meals. My radio show listeners reacted with moral and/or financial support.
The anemia lessened. My stairs weren’t such a problem. Three weeks later I was carrying my bike outside and upstairs, riding to and from treatments while still on the chemo drip. I’d shock friends and neighbors, “Wanna know a secret?” I’d reveal my fanny pack and protruding IV tube. “I’m gettin’ chemo right now!”
Mid-April 2024, chemotherapy stopped. I still get immunotherapy, but only every three weeks, likely for life. Dr. B beams I’m doing amazingly well. “As close to a miracle with out being one.”
I am blessed. Maybe lucky. Nine-months of treatment, have been hard but not as bad as I feared. I still haven’t thrown up, only negligible hair loss, and have experienced only a few debilitating side-effects my compatriots deal with.
If in the wilderness, have a guide. I actively sought support groups which lead to “BD” of Boston Medical Center. I’m in his Men’s and GI cancer groups. We do qigong/tai chi, meditation, spiritual healing, writing, crafts, museum tours, and holiday parties. They are understanding, sharing sherpas.
In meditation, I was at war with cancer - an enemy invader, I wanted gone. That shifted after reading Gabor Maté’s view of illness “markers” and the bodies alarm. “BD” recommended cancer “thriver” Denis DeSimone. Now, I see cancer is part of me. Hating cancer is hating a part of me. If I can love cancer, I’ve come all the way, teaching me valuable lessons. Most days, my buddy and me get along.
Another blessing, my new PCP. He’s older than me with a zillion credentials. After a full physical and records review, he said, “First off, you’re in excellent health and have a great attitude.”
“Despite…”
“Yes, despite. You’re not old. Medically, eighty is old. Although we know things can change quickly, I see you have many good years ahead of you.” I declared, it’s not a death sentence, it’s a life sentence.
Meeting with Dr. B recently, I attributed my near miraculous recovery to her and the hemo/onclogy staff. She said, like always, “No! It’s all you. You’re so amazing - just incredible.
I paused, “Ya know, It’s beyond just us. There are so many spokes supporting the wheels of my recovery.”
During a four-day Thanksgiving hospital stay due to treatment related colitis, Reisman 11 nurses came by, they hated my return but loved seeing me. I told my main nurse, “It’s been a dark ride. But I see a lot of beauty. Cancer is sad and beautiful.”
About the Author
A decades long freelance illustrator and a 35-year radio host at Boston college's WZBC 90.3 FM, James received a diagnosis of Stage IV metastatic esophageal cancer on Memorial Day weekend 2023. He faces his condition with humor, grace, courage, spirituality and a heck of a lot of humor and storytelling, to remarkable results. Want to hear the radio show (hold your ears!)?: www.mixcloud.com/kotjames