This is the final installment of An Unexpected Journey. This was originally posted on Facebook on October 30, 2015.
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For reasons I don’t fully understand, the discovery of the tumors on my birthday this year changed me. For the better. And in an instant.
As much as they scared me, I also knew the tumors were a gift—perhaps the strangest and most memorable birthday gift ever, but a gift nonetheless. To be completely candid, the less introspective, and more pain-averse side of me preferred the homemade kombucha I received as a birthday gift the year before. But not every gift delivers a dose of deliciousness that warms the heart. Some come with a flavor far more bitter along with a prescription for painful, exponential growth. So it was with the lymphoma.
As I reflect on the journey, I am inspired to express my deepest gratitude for the avalanche of unimaginable support I received. It is humbling and embarrassing to admit how astonished I was—in a most wonderful way—by the love I experienced throughout what was one of the most challenging, soul-expanding, and unexpected periods of my life. I am also using this opportunity to share some very personal and inspiring moments that never found their way into an update.
To be completely transparent, this sharing represents a brand new level of vulnerability and creates its own inner conflicts. On one hand, I feel a powerful and undeniable urge to acknowledge and celebrate the many people who touched my life through their unselfish support. On the other, I am intensely aware that I’ll never be able to properly thank—and may never even know—all the people who visualized, sent positive energy, or otherwise enriched my life with their acts of kindness.
To be clear, this is not intended as an exhaustive list of the wonderful and selfless acts bestowed upon me. It could never be. That said, I offer my deepest and most sincere apologies for anyone who isn’t mentioned and feels slighted. Upsetting anyone is the furthest from my intention. Know that I will never take any of my friends and family for granted. Ever.
The list below includes not only family, friends, and medical professionals, but also what I like to refer to as “Secret Support”–professional musicians whose names I can’t reveal who demonstrated a level of friendship and generosity I will cherish until my last breath. For the specifics, read on.
FAMILY
First and foremost, I am deeply grateful for my entire immediate family—especially my Dad.
As a doctor at Northwestern Memorial, his personal friendships with many of my caregivers created a momentum that enabled the process to start, and most importantly finish, weeks earlier than it otherwise would have. His expertise and ability to connect me with the right people at the right time continues to provide incredible peace of mind. My Mom, siblings, and large extended family on both sides were also a tremendous source of love and support.
THE MEDICAL TEAM
One of the earliest angels outside the family was Pam, the office manager at Dr. Steven Becker’s office. By the time I called to ask about the results of my biopsy, Pam had already made repeated calls to the pathology lab on her own initiative simply because she knew how anxious we all were to have a firm diagnosis.
I’d also be remiss if I didn’t mention Dr. Leo Gordon, the oncologist, and his assistant, Betsy. At our very first appointment, Dr. Gordon gave me his home telephone number and encouraged me to use it. I’m proud to say I only called once—the night he admitted me to the hospital with a high fever.
THE NURSES
Throughout the course of my 545.5 hours of inpatient chemo, more nurses than I could ever properly thank provided a level of care and friendship that leaves me in awe. How they maintain their smiles and positive attitudes in such a challenging environment shows what special people they are. My heart bursts with love, respect, and admiration for the teams on the 14th and 15th floors of Prentice. This includes, but is definitely not limited to, A-Nut Pitoń, Shaylyn Hansen, Katherine Skeels, and Michelle Connor.
FRIENDS & NEW FRIENDS
Ross Parr (and Melissa)
My dear friend, Ross Parr, will always be one of the first people who comes to mind when I think about this journey because he was with me when I checked in for my first chemo treatment. Besides being a fantastic wingman who helped keep all the kind and beautiful nurses laughing, Ross spent hours with me, brought dinners, and remained a key source of support.
Along the way, Ross mentioned my situation to one of his former girlfriends, Melissa, who is both a medical professional and cancer survivor. Although Melissa and I had never met, she surprised me by showing up on multiple occasions. With Stan’s Donuts. She, too, has become a dear friend.
Clare and I met shortly after college as volunteers at Children’s Memorial Hospital in Chicago. After sharing many evenings and more than a few laughs with the other volunteers, she and I lost touch until we finally reconnected through Facebook a few years ago. Like any truly good friend, seeing her for the first time in years during a visit to Pittsburgh in 2013 or 2014 made it feel like hardly any time had passed at all.
Aware of the cumulative impact of the treatments, Clare waited a few weeks before she flew to Chicago to spend a weekend taking care of me. Welcome and unexpected are the first words that come to mind. Clare made me laugh, made me meals, brought back wonderful memories, and provided an exquisite example of what it means to be a friend. Love you, Clare!
Amy Karasick & Tracy Chapin Maher
Amy and Tracy, classmates from high school, get a shared mention as it relates to this journey because of what I’ll refer to playfully as “competitive friendship”.
Amy was one of the first people I called when I found out about the tumors. Aside from the fact that we dated for almost 2 ½ years, she has been, and remains, someone I consider a close friend. For this reason, I didn’t want Amy to find out what was going on through Facebook. You’d think that alone would have satisfied her competitive nature [smile], but it didn’t. I laughed when she texted a few days later to say her goal was to earn a mention in one of my Unexpected Journey posts. It didn’t take much effort because Amy continues to honor the most important commitment we ever made to each other—to make the other laugh every day. Or at least every day we speak.
Tracy earned her spot in this category by elevating hugging to a competitive sport. I’ve always prided myself on giving good hugs, but I must admit, Tracy’s got me beat. Despite the distance between us, Tracy kept me smiling with her promise of the best hug ever when we reunited at our high school reunion this month. Tracy also gets credit for the most memorable visualization. Here are the words that touched my heart in a way I will never forget:
“I want to share with you a vision I had. I was lying in Savasana at the end of a recent yoga class. I’ve been working hard to be able to clear my mind during this pose and usually do so by finding my way to my “happy place” – a beach on the ocean. On this day, with my eyes closed, I found my mind at peace when a bright light came into view. It was a bright white light, filled with love and healing and in the center of the light was you. Not you as a person – I didn’t actually see a human standing in the light – but you as a spirit. It was clear it was you. It was almost as if this light was bursting out of you. After about 15 seconds the vision slowly disappeared and I was filled with an even greater peace and a sense of your body in perfect health. It was a powerful moment. I saw the healing in your body. As you approach Friday’s surgery I will continue to keep the vision of the light in you.
Much love, Tracy”
The spiritual side of this is incredible. But it’s even inspiring on a more earthly level. I absolutely love the fact that Tracy’s happy place is the same as mine—a beach on the ocean.
Dorottya brightened more than a few moments checking in throughout the treatment. A dentist from Budapest, Dorottya sent me a prescription for hugs and happiness. Knowing my passion for art, she also brightened my home with an original watercolor painting, done by one of her friends, that she sent from overseas. Dorottya’s friendship and support is an incredible blessing and a gift I cherish. Immensely.
Jackie and I have been friends since she first interviewed me as a high school student while she was Director of Volunteer Resources at Children’s Memorial in Chicago. Jackie, more than any other single person, helped me find the words to express the feelings I had about the tumors. We knew it wasn’t a battle. That never felt right. She was the one who first talked about “walking with” the tumors rather than fighting them. That fit my belief from the start that the tumors were a gift. After all, gifts deserve gratitude. Not animosity. Besides, since negative energy is what almost certainly fueled the tumors in the first place, I knew intuitively it didn’t make sense to treat them with more of the same.
Shen JC Jeanna Robinson, Jei Atacama, Keri Ondrus, & Christie Hwang Jordan
These are the people who guided and inspired the alternative approach that helped me through the treatment as well as the side effects.
Shenoa, who has been a dear friend for years, is a medical intuitive who knew it was lymphoma more than a week before the official diagnosis. She blessed me with Reiki and the considerable support of her prayer network.
Jei Atacama is a 9th generation Japanese healer who was instrumental in helping me manage the discomfort so it never exceeded what felt like a bad flu.
Keri and Christie are the acupuncturists who not only kept my energy flowing, but also encouraged me to work through the anger that we are certain played a role in the formation of the tumors.
Part of the story I haven’t shared is that the night I went to the emergency room with a dangerously high fever, I had been doing a meditation to release the unresolved sadness, frustration, and negative energy I’d been experiencing. Within two hours, my temperature was a full degree over what the doctors considered dangerous and worthy of being admitted.
When I spoke with Dr. Gordon that night, he said, “Pack for four days because it will take at least that long to figure out what’s causing the temperature and how to treat it.” But that wasn’t the case. Instead, I was discharged the next morning. Why? In hindsight, it makes sense because my rapidly rising and quickly falling temperature wasn’t an infection; it was my body processing and releasing negative energy. Intentions are a powerful force.
Marianne Preker
Memorial Day weekend, I was having dinner at my parents’ house feeling somewhat depressed about the fact that I was in Chicago while my friends from Underwater Safaris were scuba diving in the Caribbean. My attitude changed immediately when Michele McMahon sent a photo of the group gathered on the dive boat holding letters that read “We ‘heart’ Rob”. I knew immediately that Marianne, the owner of the store, was behind it. That one act of friendship and support instantly brought me back to a place of gratitude and appreciation for the angels in my life. It’s easily one of the nicest things anyone has ever done for me. And that’s saying a lot because there have been many.
If you’ve been following along, you may already remember Paul’s contribution to my journey. My big concern from the beginning was that I didn’t want people to visualize me checking out early. I also didn’t want people to treat me differently. Paul put that all to rest when he commented on my first note saying, “I’m just going straight to the important question, do you wanna give me any concert tickets you can’t attend? I’ll still bring the date you have for the evening also!” I laugh every time I think of it.
I can’t even begin to express how touched I was when Annie rallied people from our beach volleyball group to visit me in the hospital during one of my first treatments. You rock, Annie!
Nikki is another dear friend who has been a tremendous source of support throughout this journey. Knowing there is someone who gets what you are going through and who you can call at any hour—even though you hope you never have to—is a gift.
When I first asked people to visualize the tumors disappearing, Cynthia, a dear friend from grade school, wrote to say she was surprised to see the tumors melt in her visualization. I love that. What a great image!
Cynthia and I met in May of 2014 working out at East Bank Club. From that moment on she has brightened my life with her hugs, her positive energy, and her frequent checks to see how I was feeling. I am proud to call her a friend.
Jonny Imerman
Jonny, founder Imerman Angels, a one-on-one cancer support group, is another guy I met at East Bank Club. The moment Jonny found out about the tumors, he jumped into action putting me in touch with various people and resources. But that wasn’t the best part. The best part was his incredible ability to reach out at exactly the right time. He knew exactly when every treatment and procedure started, he visited me in the hospital several times, and he texted me on countless occasions to see how I was doing. Jonny’s organization is aptly named because he is truly an angel.
Christina Benaiges von Zatorski
Christina was another behind the scenes angel in this journey. Christina, who works for Imerman Angels, moved into my guest bedroom less than a month before the tumors were discovered. Such a wonderful synchronicity. It’s hard not to feel watched over in a very good way when the universe aligns like that. Christina’s friendship and support have been a blessing throughout the journey.
These two beautiful souls ran this year’s Chicago Marathon for the Imerman Angel team in my honor. Wow! As a person who only runs when events demand it, it’s almost impossible to imagine how hard it would be run 26 miles through downtown Chicago. It’s also difficult to express how much this means to me. Kim and John, you have honored me and other people who experience tumors in a way I will always remember and cherish. Thank you!
One of the new friends I met through this journey is Allegra Montenari, an inspiring young woman I met during my 5th treatment. Allegra was at the hospital with a guitarist who volunteers with Sharing Notes, an organization Allegra started to bring music to hospitalized patients and families. Allegra not only made a special trip to see me during my 6th and final treatment, but also loaned me her guitar for a few days to help pass the time. To loan something as personal as an instrument to an almost total stranger is the height of trust and generosity.
I am also happy to report that Allegra invited me to join the board of Sharing Notes—an honor I gladly accepted.
MUSICAL SUPPORT
Speaking of music, I have to give a special shout out to a number of gifted musicians who brightened more than a few days with their friendship as well as their music. First, the ones I can comfortably mention by name are Andy Innes and Barry Van Zyl, the incredibly talented Music Director / guitarist and drummer for Johnny Clegg, one of my all-time favorite bands. The friendship, concern, and positive energy they sent from South Africa brought more than a few smiles along the way. These are truly two of the nicest people I’ve ever met in my life. I’m blessed to call them friends.
Robbie Schaefer, Mike Clem, Julie Murphy Wells, and Eddie Hartness
Collectively Eddie from Ohio and individually four beautiful souls—these dear friends brought tears of joy with a dedication they made to me during their performance at City Winery. Love you all!
SECRET SUPPORT
A number of other professional musicians I have been fortunate to meet over the years also stepped up in unexpected ways. Out of respect for their friendship and to help them avoid being put on the spot with requests for similar acts of generosity, I will describe their depth of friendship without revealing their names.
Surprise #1
First, there is the phenomenally talented performer who was performing a sold-out show in Chicago the weekend I began my first treatment. He is a person I respect as much for his openness and vulnerability as for his considerable gifts as a songwriter and performer. The following are excerpts from our text exchange after he found out about the tumors:
X: “Holy shit brother – just heard the news – I am so sorry but relieved everything is gonna be fine – all my love young man”
Me: Thank you! I so appreciate you reaching out. What disappoints me most about the start of the treatment is that I had tix to see you play on Friday. I seriously almost asked them to reschedule.”
X: “We are thinking of you and will get you an audio of the show- you need anything you let me know, I got you covered – xo”
Me: “Wow! Thank you so much. I am so touched. You are a truly wonderful human being. You really are. Love you, man!”
X: “We love you too – you got this!”
X: “Just read your blog* and it was so beautiful, funny, heart wrenching…Can’t imagine if u weren’t with ur dad-and most importantly…what I want u to remember most is……….Bitches LOVE bald dudes!!!! Also….Bitches love dudes in cool hats!!!! 🙂
Hilarious. I love it. You’d appreciate this even more if you knew who said it. Trust me.
*He was referring to my Facebook note, An Unexpected Journey: Part 1
Surprise #2
The second musical surprise came from a band I’ve loved for years. I finally met the members in recent years and connected on Facebook, but truthfully didn’t know them all that well. It was only through this journey that I came to know what wonderful, kind, and generous people they are.
It started with a private message from the wife of the lead singer who wrote:
“Hi there, Rob! You have been heavy on my mind lately. Please know that you are in our thoughts daily. You have such an amazing attitude, but please know that if you ever need to just vent, it is safe to do so here.”
The following night, I received a surprise text from the lead singer who didn’t know his wife had reached out the night before. He asked if he could call me. Of course I said yes. Twenty minutes later, I received a call from him at his home out west. He started off by saying that he and his wife had been reading my Facebook posts and wanted to reach out. After he told me about the ways his family had been touched by cancer, he said, “Listen, dude. I don’t know what your financial situation is, but if you ever need a benefit concert, we’ll do one for you. You can count on it.”
Stunned, I thanked him as I did my best to recover from the shock. A few minutes later, he asked me more directly, “So, what is your financial situation? Is insurance covering any of this?”
At that point, I said, “I honestly don’t know. I’m pretty sure insurance is covering all of it after my deductible, but I’ve got a stack full of bills from Northwestern Memorial I’m afraid to open.”
Without hesitating, he said, “Go ahead and open them. We’ve got you covered.”
Wow! I have no words except to say that it’s a moment I will cherish to my last breath and beyond.
Amy, a passionate supporter of Y-Me and other cancer-related organizations, has been a close friend since we first met in our advertising days at Leo Burnett. One of Amy’s greatest gifts is her ability with words. But that gift isn’t limited to the fact that she is a fabulous, creative writer. The words that touched me most were accompanied by her glorious, light-up-the-room smile the first time she saw me at the gym following the news I was cured. I can still hear the amazement and joy in her voice as she said, “No one does cancer like you do.”
Of course, that’s largely because I have the most wonderful family, friends, and medical team in the world. I’m still the luckiest guy I know.