It was going to be a sweet story starring my mom (Debra) and dad (Ray). They met when they were kids in Pittsburgh and have been married for 40 years. Add my brother (Jon) and me (Arielle). A couple dogs with names like Gladrielle, Pancake, and Molly. Crazy misadventures and hijinks. A life story worth writing a book about. I'd read it. It would be one of those tear-jerker funny feel good ones about the quirky family. The yoga master mom goes to Franciscan monasteries to perform gong baths, the son paints surrealistic murals while he's not busy writing computer code, and the professional pianist daughter fantasizes between rehearsals about catching her big break on the Food Network. And Dad, the guy who runs a business called “Music From Outer Space” (Yup. That's what it's called.) out of the basement, Mom's faithful gonging duet partner.
About a month ago Dad went to the doctor because he had some persistent back pain. They did a CT scan and discovered some irregularities with his kidney. They did a second CT scan and found enlarged lymph nodes and spots in his lungs. And just like that, we found out that Dad has cancer.
My dad Ray has always been a robust guy. A big, bold, silly Italian guy. He can never finish his jokes because he starts laughing too hard and gives away the punchline. He never gets a cold; he has always been healthy as an ox and seemed to me as strong as a bear. There was nothing too big to lift, too tall to reach, or too difficult to do. He has always loved to ramble the hills by bike or by foot, a notebook and voice recorder in tow to jot down his latest ideas and inspirations. He's an inventor, author, artist, beekeeper, and musician. Married for 40 years to his childhood sweetheart, he loves spending time with family. He is Master of the BBQ and champion peeler of apples. Make him a pie, and you've made him a happy man. An engineer, he has patented pacemaker technology, built countless synthesizers, constructed forts, renovated houses, and designed ingenious chicken coops. He can tune pianos, compose guitar ballads, and sing in just about any octave. Ray is a philosopher, an author, a thinker on a hill with a strange knack for arranging anagrams; if there were a fortune to be made from playing Scrabble, he would make it big. Ray is a renaissance man. A gregarious lover of life.
That's Dad. That's the Dad we expected to enjoy for many years to come. He's only 60, so we thought we had lots of time left in our whacky family story co-starring this invincible man. Now, though, all our stories have screeched to a disbelieving halt. Now we're all trying to wrap our heads around this brutal plot twist. Now I'm sitting here at the Kaiser Permanente in Denver. I look at my brother sitting anxiously upright in the chair across from me, and I realize we are living my worst nightmare: we are sitting in the hospital, in the oncology wing, with our family.
We are now one month and 10 days into this new chapter, and they finally have a diagnosis. Dad has stage 4 cancer of the bladder that has spread through his urinary tract to his kidney. We are entirely disarmed by this news. Flabbergasted, we have gone from primary care physician to the nephrologist (kidney specialist), and from there to the urologist and on to the oncologist and the interventional radiologist. We shuffle from doctor to doctor, navigating this Oz of medical terms and professionals and procedures.
The man I thought was secretly a superhero has lost about 30 pounds over the past two months. The man who would tote rocks and cut down trees in exchange for a slice of my mom's pie is struggling to eat enough to become strong enough for any sort of treatment options. We are scrambling to concoct nutritionally dense foods, interest him in eating, and combat the physical melting that accompanies his cancer. He is in constant pain. His favorite activities have become impossible, and he has suspended all business with his dream job, Music From Outer Space. It is tremendously difficult for him to make it through a day, and it is strikingly painful to watch him struggle.
Ray is an intensely private guy. Publicizing this information was not his favorite idea. But my parents need help. My mom has cut back on her work schedule to about 10 hours a week so that she can be home to care for my dad in addition to managing the household. Her goal is to help him regain enough strength through diet and physical activity so that he is strong enough for chemotherapy and potential surgery. Her days are full of encouraging him through light resistance training, coaching him on short walks and directing his physical therapy; providing for his strict regimen of pain management and nutrition, and taking him to appointments.
Because my parents are both self-employed, they pay for their own healthcare. They are not covered by any sort of employer-provided long term leave benefits. Currently they pay about $1500 per month for health insurance. Add to this baseline the array of tests, prescriptions, transportation, specialist visits, new dietary needs, and the general cost of living. It is very expensive to be sick.
These costs will soon outstrip savings for a rainy day; they will chip into reserves and eventually eat up their retirement funds. And my mother isn't even 60 yet. I am extremely concerned, and therefore am turning to the generosity of the community and asking that you please consider helping in any way you can.
Dad has shared so much with the world through his work, his art, and his writing. How has he affected you? Perhaps you have learned a new skill and developed a hobby thanks to MFOS. (Have you built a Weird Sound Generator?) Maybe you've read his book, Make: Analog Synthesizers. Maybe you or someone you know has benefited from his extensive research and development in the field of implantable defibrillators and pacemakers. Maybe you have laughed at his YouTube channel or enjoyed a concert or downloaded some of his music. Maybe you're a family member or an old friend wondering what you can do from far away. Well if you were planning to send flowers, please give instead. If you were going to make a casserole, please give instead. If you care but you feel totally helpless, please consider giving if you can. Every little bit will help to defray the mounting medical bills and give my parents a little breathing room.
Our story is changed. But we are taking it one page at a time. Please click “share” and spread the word. Please check this page often for updates as we navigate this new narrative together.