After a most difficult year, heeding the invitation to slow down and enjoy...
Beautiful Souls,
I hope this finds you in good health as we prepare to emerge from this long winter together.
Springtime is just a couple of weeks away — and with it looms my next CT scan (which I continue to take healthy steps toward, and which I continue to visualize as being completely negative, unremarkable, and clear). Thank you, as always, for joining me and sharing all the good vibrations, positive intentions and supportive words.
Thanks as well for joining in this latest round of contributions to my healing fundraiser. In my last post, I shared about my recent exhaustion of disability benefits and the heavy new insurance deductible and health care costs I’m facing this year. I deeply appreciate the generosity!
I just wrapped up a weeklong journey to New York City with my darling daughter — a most joyful experience replete with memories I will cherish for the rest of my life.
I’ve reflected a great deal on the meaning of this trip in the context of my greater story. In this post, I’ll share reflections and photos from my travels, including this latest NYC excursion and other recent adventures in healing.
First, though, a little health update.
I continue to recover from my summer of acute suffering during the challenging episode of cancer recurrence and treatment you’ve all read about. I’m grateful to be feeling progressively better, although I have also experienced some persistent difficulties.
My blood tumor markers have remained in “normal” range from one monthly lab collection to the next. While these markers have remained in standard range, I have felt occasional pangs of anxiety prior to receiving my monthly results — and even though fluctuation in the levels of these blood markers is perfectly normal, these minor changes have been accompanied by varying degrees of relief or concern.
I’ve also felt some frustration with how long it seems to be taking my basic blood levels (including white and red blood cells) to return to “normal.”
Six months after completing chemotherapy, while the overall trend is in the right direction, many of these measurements of my blood health have continued to show significant room for improvement and healing. At last measurement, my WBC, RBC and other aspects of blood health were marked “low,” leaving me to ponder its meaning and how I can better support the healing process.
I am doing my best to support my body’s recovery with the healthy diet, exercise, supplements and other healing practices I’ve written so much about in previous posts, but it has been slow going. I feel pretty good in my body, and as I move through the world, hike mountains and hit the gym, my strength and stamina are getting back to pre-cancer levels — I even signed up to run the Bay to Breakers in May! — but a glance at my blood work clearly shows that my body has been through a major ordeal and is very much in the process of bouncing back and regaining homeostasis.
Around the turn of the new year, I shared this chart mapping the decrease in size of the lymph node that has appeared larger than usual in the measurements taken via CT scan since my treatment this summer. In the three post-chemo scans since September, its diameter has gone from 2.6 cm to 2.1 cm to 1.6 cm, and my hope is that this next measurement later in March will show that is has returned to an unremarkable 1 cm or smaller (“normal” size), thus bringing me the long-sought-after distinction of “No Evidence of Disease.”
The moment I go in for my next CT scan (which I’m hoping will be around the Spring Equinox, later this month), I’ll incur my largest medical bill of the new year — likely in the realm of $4,000 — which I’ll have to cover out-of-pocket and which will bring me pretty close to hitting the new year’s $5k deductible. I’ve used prior donations to cover prior medical costs and cover rent and utilities, and I am down to the end of my emergency savings. Thus, my recent invitation for donations.
When I put out the call for a new round of support for these medical bills and my ongoing cost-of-living expenses a couple of weeks ago, many of you rode to the rescue, with donations ranging from $10 to $200. I give thanks for these statements of solidarity, and I continue to invite whatever support you can authentically muster. If you’d like to donate, you can do so here.
Can you hep out?
“In New York, you can be a new man…”
I spent last week in the chilly but enlivening embrace of the greatest city in the world. San Francisco is my original hometown and will always be my personal favorite city — but New York City has an unmatchable energy and ultimately takes the crown when it comes to big-city magic.
I moved there when I was 18, fresh out of high school, and attended New York University, living all around Greenwich Village and graduating in 3 years with Bachelor of Arts degrees in English and History, a certificate in Nongovernmental Organizations, and a year spent as an award-winning editor at the campus daily Washington Square News. The university is so deeply integrated with New York City that there is no telling where the campus ends and the rest of the city begins. As someone put it during my college years, being an NYU student is being a New Yorker who just happens to go to school.
A year after graduating in 2006, I returned for another sojourn in the Big Apple, living in Harlem with my then-sweetheart Karen and our little dog Peanut, as I began to self-define as a writer and peaceful revolutionary and search for my place in the movement of movements. We were there for Obama’s speech in Washington Square Park in October, 2007. In the ensuing months, I learned that my father had leukemia and returned to the Bay Area to be with him. I’ve lived on the West Coast ever since.
During the formative years of my early adulthood, New York City became a significant character in my life story. There, I forged some of the strongest bonds of friendship in my life to this day, I logged some powerful memories, and I experienced some major intervals of consciousness-expansion and personal growth.
When I moved back home to the Bay Area, setting me on a trajectory to become a father and settle down in Sonoma County over the next decade, I knew that New York would remain an active character in my life. It might no longer be my place of residence, but I knew I’d be back. You can never really leave New York.
I’ve revisited NYC a few times since then. In 2010, I returned to hang out with some old friends, including my brilliant roommate Mark. I also ended up having a life-changing mystical experience that week with another dear friend, Jackie Rose.
In 2015, before deciding to run for US Congress, my one-man “exploratory committee” traveled to Washington, D.C. to meet my would-be opponent and assess the viability of a run. On the way there and back, I spent a few days in New York, where I also attended my friend Aliza’s wedding to a great guy named Bill. At the rehearsal dinner, I read from my favorite passage “on marriage” from The Prophet, by Khalil Gibran:
…Let there be spaces in your togetherness,
And let the winds of the heavens dance between you.
Love one another, but make not a bond of love:
Let it rather be a moving sea between the shores of your souls.
Fill each other’s cup, but drink not from one cup.
Give one another of your bread,
but eat not from the same loaf.
sing and dance together and be joyous,
but let each one of you be alone,
Even as the strings of a lute are alone
though they quiver with the same music.
Give your hearts, but not into each other’s keeping.
For only the hand of Life can contain your hearts.
And stand together yet not too near together:
For the pillars of the temple stand apart,
And the oak tree and the cypress grow
not in each other’s shadow.
(These experiences are all pages in my future book, and I hope to someday do them justice through more thorough literary expression. But for now, given the limited container of this blog post, this banal summary will have to suffice.)
Then, three years ago — just before the world went topsy-turvy as the Covid pandemic took hold, I brought a six-year-old Satya on her first Empire State excursion.
I introduced her to Mark, and we met his baby daughter, Julia. We got pedicures in the West Village with my amazing friend Tyler. And we got to meet Aliza and Bill’s son, Judah.
On that first trip, Satya and I spent a few days romping around New York City. We took the ferry to the Statue of Liberty, ate copious pizza, explored Manhattan on foot and via countless subway trips, and we saw Wicked on Broadway (birthing a delightful monster in the form of Satya’s newfound affinity for musical theatre — which I fortunately share).
I think I did a good job of introducing my kid to New York, because ever since then, she has asked me when we’re going back. And until recently, I had the same question, myself. Covid naturally had its say in reducing travel accessibility starting in 2020. And then, of course, there was the minor inconvenience of a cancer diagnosis and a devastating year of treatment and slow recovery through 2021. But as I began to emerge from the other side of chemo over the summer, I got some pretty clear signs that it was time to set my sights on traveling again.
Getting the Message
If you’ve read any of my posts this year, you’ve probably sensed that I’ve been doing my best to make meaning of my cancer experience and “get the message” from the dis-ease. As I’ve listened in (and as I continue to pay attention to the wisdom of my body and spirit, some of the main messages I’ve come away with are 1) that I really desire to write this book and share my story, 2) I can and will do a much better job of managing my energy, cultivating a healthy lifestyle, and choosing joy over stress, and 3) the time is NOW to say YES to doing the things that make my heart sing.
I’ve hustled so hard these last several years (operating, of course, with the only level of consciousness I had access to at the time) — and while I’ve had plenty of fun and experienced many sweet moments, I also spent so much time in “survival mode” that days, weeks, years seemed to slip by without being truly savored or maximized for their potential to serve, celebrate and express life.
In the depths of chemo last summer, I began to look ahead to better days, as I willed myself to move through and beyond the temporary state of cancer, and as I envisioned a meaningful, joyful and long life after treatment. I had essentially sacrificed the summer of 2021 on the altar of getting well, and so I began to look to the coming year for my next great adventures on planet Earth.
The Greatest Perk of All
I’ve begun to use the term “cancer perks” to describe some of the beneficial experiences that I’ve had access to as a result of this healing journey I’ve been on.
Don’t get me wrong, being diagnosed with cancer as a relatively young adult is no picnic. Even when I am (insh’Allah) pronounced as having “No Evidence of Disease,” there will be a heavy psychological toll to deal with, to say nothing of the persistent neuropathic burning and tingling in my fingers and toes wrought by the chemotherapy.
But there is a bright side to all of this as well.
The greatest perk of all is, of course, the gift of life itself. There is nothing like the credible fear of death and awareness of mortality to bring us into greater awareness of this gift.
And if there is one thing I hope these dispatches of mine can do for readers, it is just that: spread the awareness of how priceless, how sacred these moments are; encourage us all to seize the moment and make the most of each day; celebrate the meaning and beauty of the paths we are so blessed to walk. We never know when our time will come. I hope and pray and create that my life (and yours!) will last a very long time — but not one of us knows how long these gifts of ours will last, nor will any of us ultimately get out of here alive.
One cancer survivor I met this year went so far as to utter the phrase, “have pity for those who don’t get to experience cancer.” It’s a pretty bold proposition — but I see where she was coming from. The Angel of Death can be disruptive, but if you’re paying attention, the disruptions and transformations can be tremendously life-affirming and deeply enriching.
What blessings the Angel of Death can bring! Consciousness of the preciousness of life! Newfound appreciation for every breath! The fading away of inconsequential small stuff: flat tires and spilled milk and comments from the misguided souls in the cheapest seats. When the Angel of Death is in the house, we know what really matters. And it makes everything else seem very small indeed.
Cancer Camps
But that’s not where the perks end. There are also cancer camps!
You may have caught my post in November sharing highlights from my surfing and kayaking trip in Santa Barbara with First Descents, one of a handful of remarkable nonprofits dedicated to supporting cancer recovery through adventure and connection. It was awesome! I not only got to ease back into outdoor adventuring after a pretty subdued season of hospital visits and reduced energy; I got to make friends with other young adults who had similar (and yet also quite varied) experiences with cancer. The healing effects of this kind of connection cannot be overstated.
In January, I enjoyed a similar all-expense-paid excursion with other young survivors — this time snowboarding in Tahoe with the Send It Foundation. It was my first time snowboarding, and in three days at Palisades (under some pretty awesome tutelage from an experienced snowboarder), I made my way from barely being able to stand, to repeatedly shredding down the entire mountain (and even ascending a black diamond lift a couple of times to try my hand on some more challenging slopes). Even more importantly, though, I shared in still deeper connection with a few beautiful, kindred souls whose lives, like mine, have been forever changed through the dance with cancer.
As a Send It and First Descents alumnus, I hope to volunteer and participate in future excursions with my growing tribe and maintain these bonds of connection and friendship with the inspirational young survivors I’ve been fortunate enough to spend time with.
This May, I’ll also be participating in a fly-fishing retreat near Yosemite through a program called Reel Recovery, which focuses on supporting and connecting male cancer survivors of all ages through their recovery. I’ve also applied to attend a retreat later this year with a group called Epic Experience, based in Colorado. If you know anyone else healing through cancer and ready to connect with other survivors, please feel free to share these empowering resources!
The Hidden Benefit of Spending Hella Money on Medical Treatment
As I entered into my third body-pummeling round of chemo this summer, a vision began to emerge for a trip with Satya.
When I wrote my “A Year to Live” post in October about creativity, bucket lists and healing, I was in the process of reconnecting with my zest for exploration. I had envisioned a monthlong summer trip with Satya, flying through New York, on to London, and then traveling by rail through Paris and Amsterdam and on to my ancestral homeland of Sweden and Finland.
The coolest part: I learned around this time that, through all the money I had spent on healthcare visits, treatments, consultations, food and supplements this year, I had amassed enough credit card points to get Satya and I both to Europe and back virtually for free. We have hospitality waiting for us in many places across the Atlantic, so it began to appear that I could bring her on an epic journey this July with minimal expense. I began to map out a trip.
It turned out to make logistical sense to separate out the NYC leg of the trip and make that its own journey — mostly to give us more time in Europe than we do go — so a plan gradually emerged that would put us on an airplane together last week for the first time since this pandemic began.
When I went to the emergency room in excruciating back pain last June, ultimately leading to the diagnosis of my cancer recurrence, the doctor treating me confided in me that he, too, was a survivor of testicular cancer. He shared that, since his life-changing brush with mortality (which had happened decades earlier), he no longer made plans. He even confessed that his wife ultimately left him, owing in part to their inability to plan vacations together. For this doctor, though, his new approach to life was all about living in the moment. That meant not taking the future for granted.
I’ve noticed a slightly different approach emerging in my own post-cancer outlook. By all means, I aspire to embody present-moment awareness and celebrate the joy of each new day, and I appreciate that tomorrow is promised to no one — but I also find myself desiring to create my future more consciously than ever. And if I want that future to include things like travel, that includes a necessary modicum of time spent clearing space on my calendar, booking tickets, and packing bags.
From New York with Love
Our New York trip was a joyful and sacred experience. We stayed at Aliza’s flat on the Upper East Side (the same place I stayed after my exploratory visit to Washington, D.C.), and from there we ranged around the island of Manhattan. We did a few touristy things at the beginning of the week, including a return to Liberty Island and Satya’s first time to the top of the Empire State Building. We spent a day with Mark traipsing around Greenwich Village and revisiting our old haunts, including catching a glimpse of the fire escape at our erstwhile East Village apartment on East 5th Street at Avenue B.
We took a carriage ride and went ice skating in Central Park. We visited the American Museum of Natural History. We balled out a bit on Broadway, quenching our thirst for theatre by attending Harry Potter and the Cursed Childand Hamilton (whose soundtrack we listened to virtually nonstop in the month leading up to our trip).
Satya’s favorite experience of all was our breakfast at Ellen’s Stardust Diner, where members of the waitstaff, made up of aspiring Broadway performers, take turns singing show tunes and pop songs while patrons dine. While eating chocolate chip pancakes, we were treated to some of our favorite songs from Wicked and Hamilton.
While my diet recently has been mostly free of gluten, dairy and sugar, we consciously indulged this week in some quintessential New York fare, including several slices of pizza and bagels, frozen hot chocolate at Serendipity, two trips to Gray’s Papaya for the best hot dogs in the world, and a night in Little Italy that included pasta, cannoli and gelato. We also enjoyed some healthier cuisine, like ramen, sushi, Caribbean food, pho, curry, plenty of green juice, and (my all-time NYC favorite) falafels from Mamoun’s.
Other trip highlights included taking Satya to Harlem to experience the culture and visit my old apartment there, touring the Lower East Side’s Tenement Museum, making pilgrimages to Hamilton’s grave and his “It’s Quiet Uptown” home, and connecting with some friends on the Upper West Side for dinner and an evening of play on their aerial silks.
Mostly, though, we just walked around and enjoyed our time together. We took subways to different neighborhoods and giggled through the streets. We stopped and climbed around at pretty much every playground we saw. We stayed up late and had fun. Every moment was medicine for the soul.
I don’t know that I can adequately express how grateful I feel for the privilege of this experience, and how fortunate I feel to be returning to a sense of good health in my body. And not that we need to suffer in order to “earn” the right to have fun like this — but I’ve also come to a place of feeling good about surrendering and treating myself to this joyful journey, free of guilt. We spent a bit of money on some attractions, show tickets, meals, subway fare, t-shirts and a souvenir stuffed owl, but in the context of all the money and energy spent on treatment this year, all the time in the waiting room, all the strife and difficulty and confusion, this week in New York felt perfectly appropriate.
If you’re able to contribute to my healing fundraiser, it’s possible a portion of your contribution will end up going toward our bite of the Big Apple; but far more likely, it will be put toward covering my multi-thousand-dollar scan coming up in a couple of weeks. Either way, your ongoing support is deeply cherished and appreciated.
As I wrap up here, I also need to acknowledge what an awesome travel companion Satya has become. She’s always up for adventure, she’s got stamina for big days and long walks, and she’s patient in the face of lines, delays, and other unforeseen roadblocks. She’s not a complainer. She’s a warrior. And as we are in travel, so we are in life! Color me a proud dada.
Whatever you’re up to, I hope you are enjoying your moments, and if you have it in your heart to take a leap and go somewhere exciting and beautiful, I encourage to take that leap as well — NOW — and not wait for a scary diagnosis to remind you how precious life is.
And wherever your journey may bring you, I hope you are enjoying the path.
We really are blessed to walk it.
With love,
Nils
