In the Woods (and Loving It): An End-of-Year Health Update
Loving Salutations, Comrades!
November came out of nowhere, and I haven’t shared a health update since letting you know I was headed in for my follow-up CT scan in late-October, which I followed up with a post celebrating Satya’s 9th birthday. Thanks for your patience with a brotha : )
In this dispatch, I’ll share the results of my latest scan (spoilers: that outlaw lymph node is shrinking good!) and my sense of where the path seems to be leading me.
I’ll also give an update on my ongoing holistic treatment and the chemo side-effects I’m dealing with, reflect on my recent First Descents surfing adventure with fellow young survivors, share some dank cancer memes, and offer a few thoughts on the emotion of anger, whose suppression may have something to do with how this dis-ease showed up in the first place.
As always, a big shout-out to everyone who has contributed to and shared my healing fundraiser. Thanks to your support, we just hit the 80% mark!
I am beyond excited to declare victory on this sucka, put it to bed, and move on to bigger and better things. In the mean time, though, your donations have made a world of difference in my being able not only to pay my medical and household bills, but also to afford such a robust assortment of complementary healing supports as weekly acupuncture, IV Vitamin C, frequency-specific microcurrent therapy, lymphatic massage and all the fresh juice and supplements that have fueled my body’s increasingly successful response to the biggest challenge I've ever faced.
I believe this path of 360-degree treatment I’m on (along with all your prayers and good vibes out there) is responsible for whatever success I’ve had in the healing realm.
Thank you for continuing to support and share this cause!
The Main Update:
That Node? It’s Shrinking.
Those of you following the journey may recall that I completed my third and most brutal round of chemotherapy in the end of August and had my first post-treatment scan in the beginning of September.
That scan showed a healthy body, with just one abdominal lymph node slightly larger than normal (2.5 cm in diameter, compared to the 1-cm width of your everyday node).
My team at Marin Cancer Care referred me to to the head of UCSF’s genitourinary oncology program, who told me that as long as there is a node larger than a centimeter, the standard of care is a major surgery to remove it (along with a dozen or more nearby nodes), on a 10% statistical chance that there may be viable cancer cells remaining there. I spoke with the would-be surgeon the following week, and we landed on a plan together.
I expressed to both doctors an ultimate willingness to do whatever it takes to achieve the best outcome — but I also shared my deep intuitive sense that I am cancer-free, my desire to avoid surgery if possible, and my belief that, given some time to heal, my body will eliminate the scar tissue and dead cells that are most likely causing this “outlaw node” to appear larger than others on scans.
They told me this was a reasonable approach and invited me to get another scan in 8 weeks.
So I spent the next two months doing my best (in this confusing state of "lymph-bo”) to take right action and make good choices for my ongoing healing.
That follow-up scan just happened two weeks ago. It has taken me some processing in order to share the results here.
The scan showed that the node in question is shrinking, just as we had hoped it would. It reduced in volume by 20%, with its long-axis diameter decreasing from 2.5 cm to 2.2 cm. That might not seem like much, but in terms of spheroid volume, it's actually pretty significant. I think.
I was initially not sure whether to feel happy or disappointed. This road has felt so long and difficult, and I had been visualizing and hoping for a complete remission and a normal scan with no evidence of disease. Instead, I got a big signal that I’m on the right track, with the caveat that I have more work to do.
Was this a win?
A friend of mine, who happens to be a brilliant math instructor, helped me visualize what a healing timeline might look like based on existing data points. He made this graph, with the red line showing my target node volume, and the blue line showing the trajectory of the shrinking outlaw node.
I recognize that cancer is anything but linear — but this really helped me visualize how significant these recent scan results could be in terms of indicating the ultimate node-shrinkage I’m going for here. God-willing, if I keep at it and maintain my practices in dedication to holistic healing, I will see complete recovery in the coming months.
My chiropractor made an interesting remark. “To change anything by 20% — especially in just 8 weeks — is a remarkable thing," she said. "Imagine someone’s bodyweight decreasing by 20% in 8 weeks.” She was one of the many voices around me hailing these latest scan results as a victory worth celebrating and a sure sign that I am on the right track.
I talked a few days later with the surgeon and consulted again with my naturopath — and I’ll speak next week with my UCSF oncologist too. The emerging plan is to re-scan again in another 8 weeks, around the end of December, and go from there.
Hopefully, this encouraging trend will continue and we can ring in the new year celebrating the good news of further recovery!
In the mean time, I am continuing to get down to the business (the sacred duty and privilege) of deep healing. I’m continuing with the many nourishing and cleansing practices I’ve written about at length — the acupuncture and herbs, the diet and juicing, the yoga and exercise, the visualization and meditation, the writing and expressing, the massage and microcurrents, the vitamins and supplements, the rest and recreation, the processing of trauma and the integration of my life — and I trust that all these modalities will work together to bring about the remission I desire.
Going Gently in the Woods
One beloved reader and friend recently remarked on a comment I made about “going hard on the holistic healing” in one of my recent posts (“Medical Privilege and the Cost of Living”), offering a wise and gentle reminder that “what we put energy AGAINST becomes stronger — just as what we put energy FOR becomes stronger. Don't 'go hard' after holistic healing. Go gently, with arms open, palms open. Flow with it.”
Another ally responded to a comment I made in my “Fire Szn” post that “I am not yet out of the woods entirely,” by remarking, astutely, “I think of being in the woods as a strong positive.”
I really appreciate all the universal feedback, gentle reframes, and invitations to course-correct I’ve been getting along the way! I am now proud to say I am going gently on the holistic healing, and I am cherishing my time in the lush, green woods of healthy living.
Thank you to all my friends out there for your prayers, well-wishes and good vibes throughout this trying year. If you’re up to it, I humbly request another round of them, as I boldly make my way through this next season of healing and look to yet another scan in December.
Between Christmas and New Year’s Eve, I’ll receive another radioactive injection, slide again through that big, high-tech donut, and I’ll have a new picture of my increasingly harmonious insides.
Here’s to ever-healthier bodies for us all!
Celebration: Out Living It with My 'First Descents' Homies!
I’m sending this post from a little writing retreat that I organized for myself in the gorgeous and mystical desert near Joshua Tree, one of my favorite places in California. What better place to sojourn in chilly November than this 80-degree bastion of eternal warmth?
Before landing here on Sunday night, I spent a powerful weekend in Santa Barbara, connecting (and surfing and kayaking) with an amazing group of young cancer dancers and survivors — just the medicine this weary soul was needing!
Since my abrupt diagnosis and surgery in January and my even blurrier recurrence and rounds of chemo this summer, I’ve had some (precious and few) sweet moments of connection with others who have ridden the dragon of cancer. Some friends have replied to my emails and social posts with their own stories of survivorship, and I’ve had the opportunity to attend a couple of online cancer support groups — mostly with elder sisters who had taken on breast cancer and were great guides to me as I crash-landed in the world of the newly diagnosed.
But this weekend was some next-level isht.
The ability to sit around the campfire and talk freely about our experiences (including some of our frustrations in dealing with uninitiated but well-intentioned “cancer muggles” out there who ask things like, “how are you?” and “what can I do to help?”) was beyond powerful.
It was a great non-judgmental space for us each to process whatever was on the frontier of our individual healing journeys. And I give mega thanks to the great mystery for allowing me to be a part of it.
Oh, and we also got to share resources and hacks. One of the greatest suggestions I came away from the weekend with was to follow @thecancerpatient on Instagram. Over the last couple of days, it has yielded abundant laughs of recognition. Score!
During our weekend of exploration and connection, we were each bestowed by our comrades with a nickname. Mine was “the Congressman” — a reference to my fiery burning passion for social and environmental justice that manifested in my campaigns for US Congress in 2016 and 2018 (…and perhaps, once Satya’s all grown up, my future destiny in public service? Just sayin! ; )
Far from being a one-and-done adventure, this weekend was more like a keynote to the next chapter of my life, replete as it will be with awesome excursions, breathtaking adventures, and new heights of joy. My First Descents friends and I have begun organizing an international trip. Stay tuned for more on that!
In the mean time, I’m learning of the wide world of what one new friend playfully referred to as “cancer camps” that exist out there. I’ve applied to attend a few other retreats and excursions, and was just accepted to a young adult cancer survivors’ skiing and snowboarding expedition in NorCal this January through the Send It Foundation. I’ll be sure to let you know how that goes.
Gotta get them camps! #CancerPerks
A Final Nod to Pathos
I felt pretty pathetic this summer — especially during that third round of chemo, when I was at my absolute weakest. And baldest. And most nauseatingly slimy-tongued. (*Shudder*)
Since I began bouncing back around the end of August, I have mostly focused on the positive. ("My hair is growing back! My tongue feels normal again! I’ve got more energy! I’m no longer in excruciating pain! Hooray!")
But in my rush to celebrate the abundant good news of evident healing, I may have neglected to mention some of the persistent and annoying side-effects and after-effects that I’m dealing with.
At the top of the list of ongoing annoyances — bodily enemy number one — is neuropathy! Or as I like to call it, f*cking motherf*cker of goddamn tingling and motherf*cking numbness in my f*cking fingers and toes!
I didn’t know this at the time, but apparently one of the chemo agents they gave me, cisplatin, has a half-life in the body of around three years, and it’s not uncommon for side-effects like this to set in months after treatment ends. Talk about a gift that keeps on giving!
Some of you laughed this summer at my joke about literally having platinum flowing through my veins (“bling bling”), but it turns out that there are some real hidden costs to such luxury. I’m doing my best with self-massage and tactile therapy to return normal sensation to my extremities, but yeah — neuropathy is the worst.
Unpredictable energy is probably the most frustrating of the second-tier chemo after-effects I’ve been dealing with.
I’m starting to feel a bit more wind in my sails, and I’ve shared about my recent return to the gym and some other more exciting physical activity, including this weekend with First Descents in Santa Barbara. But it has also recently been more challenging than usual to drag my body out of bed in the morning and kick my day into motion, and I greatly look forward to rebuilding my energetic stamina.
Since there was an orange-sized mass in my rear abdominal area as recently as a few months ago, it has also taken me some time to get over the residual pain of having many of my nearby nerves compressed to the point of terror. Exercise, yoga, massage, stretching and hydration certainly help, but I definitely also look forward to being free of this lingering pain.
Third-tier side effects include the muscle atrophy from my chemo summer, rebuilding the veins in my forearms after numerous pokes and infusions of caustic materials (trying to draw blood from me? good luck finding a pipe!), and the ongoing project of recovering my gut microbiome from the havoc wreaked on my digestion by chemo and two rounds of antibiotics.
All things in time, I suppose.
The main and most challenging side-effect from chemo and after-effect of cancer, though, is fear and anxiety.
This may deserve a longer post another time — first, I need to achieve complete remission — but there will probably always be this haunting concern lurking somewhere in the back of my mind: what if it comes back?
I’ll do my best not to dwell on such things and simply to stay present. But if there is one thing that my First Descents peers and my new favorite influencer @thecancerpatient have most comfortingly reaffirmed, it is that life after chemo (even in various states of remission) is challenging, and that just because “treatment is done,” it doesn’t mean the cancer journey has reached its final conclusion or that we're "back to normal."
In fact, I don't expect (or even necessarily want) to ever be "back to normal." I continue to be transformed daily by this experience, and perhaps the fact that my body is taking some time to metabolize and integrate the physical effects of this crazy medical journey is little more than a outward representation of the innerprocessing that I have yet to do around this tumultuous spin-cycle that was my diagnosis, surgery, recurrence and treatment.
Praise Allah, the journey continues, and there will be more still for me to process tomorrow.
On Anger: Sh*t that Pisses Me Off
I reflect often on the deeper philosophical, ontological and mythological significance of my cancer diagnosis, asking questions like, “how did this happen?” and “what is this here to teach me?” — and, perhaps most often of all, “how can I get the message and avoid this ever having to happen again?”
When doctors and friends say things like, “you didn’t do anything to cause this,” and “this was random; it could have happened to anyone,” I feel frustrated and disempowered. Conversely, when I consider how I might have been responsible for creating this reality for myself, and what I might do differently to create a better outcome in the future, I feel encouraged and empowered.
One friend reminded me in a recent text of some wisdom offered by one of my favorite authors, Dr. Gabor Maté — namely, that people who develop cancer often have a difficult time expressing healthy anger.
I’ve shared before about the work of Maté and his the-title-says-it-all book “When the Body Says No: Understanding the Stress-Disease Connection,” and I was excited to learn last week that there is a new documentary film about his work coming out next month called “The Wisdom of Trauma” (you can view the trailer here).
"I don't get angry," quips Woody Allen's character, Isaac, in the classic film Manhattan. "I grow a tumor instead."
According to Maté:
In over two decades of family medicine, including seven years of palliative care work, I was struck by how consistently the lives of people with chronic illness are characterized by emotional shut down: the paralysis of “negative” emotions — in particular, the feeling and expression of anger. This pattern held true in a wide range of diseases from cancer, rheumatoid arthritis and multiple sclerosis to inflammatory bowel disorder, chronic fatigue syndrome and amyotrophic lateral sclerosis (ALS)... People seemed incapable of considering their own emotional needs and were driven by a compulsive sense of responsibility for the needs of others. They all had difficulty saying no.
I’ve done quite a bit of reflecting this year on boundaries, saying “no,” and how I may have been unintentionally complicit in allowing cancer in by neglecting to declare some powerful boundaries, as I endured trauma after trauma these last couple of decades, hustling all the while to make ends meet.
But only recently, thanks in part to this friend’s helpful suggestion, have I begun to really interrogate what role anger plays (and what healthy expression of anger might look like) in my life.
It’s probably more than I can do justice to here at the end of an already-long post, but I’m going to do my best.
While I’m passionate about social and racial justice, equality, protecting our environment, real democracy, and the system change needed to actually realize peace and liberty and liberation for all, most of my friends would also probably describe me as “pretty chill” and “a positive guy.” I don’t know if it’s all the weed I smoked in my twenties, but I tend not to worry, or get too upset, or complain much at all, really. Even my earlier list of annoying chemo side-effects and my curse-word-strewn description of neuropathy is pretty out of character for me.
But I’ve been wondering lately: has my relative absence of anger been a bogus survival strategy that I’ve adapted in order to palliate the more uncomfortable truths of my existence? Do I have some deep, indwelling anger that I’ve been repressing all these years? Have I been deluding others (and, more harmfully, myself) with this happy-go-lucky attitude that usually shows on the exterior?
The best answer I’ve come up with so far? Probably so!
But what does that mean for me? Do I need to start cursing people out, yelling at folks, and engaging in bouts of road rage?
Probably not! But perhaps I would also do well to look at the things that bother me, identify which of my boundaries have been crossed, and find a healthy way to express it.
As my friend (also a cancer survivor in my local community) put it:
I’ve been thinking it’s perhaps naming the things that we feel anger about, not downplaying or skipping over that part in our efforts to be neutral and mellow. Even saying in a calm way, “I’m angry about…” feels pretty powerful. It feels like a source of untapped energy in a way. Anger doesn’t just mean yelling at someone, that perhaps is a less healthy version… I think of Anger as letting us know when a boundary has been crossed, so working with and naming boundaries could also be a healthy way to express anger.
Wow. And this gem came through in a midday text, no less!
I’m bringing these questions of anger and boundaries into the realm of my inner work — but in service of continued healing, I’ll conclude this dispatch with a brief (but far from exhaustive) List of Things that Steam My Clams.
Without further ado, I offer you some sh*t that pisses me off.
Capitalism. It bothers me that our society is organized around a harmful, anachronistic economic system that places profit before people. A “free market” just means that those with more economic power are free to abuse those with less power and extract from and destroy the planet we call home. It is infuriating.
Money in politics. It is such bullshit that most of our elected officials are millionaires looking out for billionaires, and I am angry about the stranglehold that money has on our political system. Even most mainstream Democrats refuse to take a real stand on the most important issues of our time because they’ve been bought and paid for by corporate lobbyists. It’s no wonder so many people don’t vote, and it’s no wonder that when they do, so many of them vote for human molotov cocktails like Donald Trump. His populist rhetoric about the system being "rigged" appealed to the understanding (even among working-class Republicans) that the American political system is mostly corrupt.
Our unjust, for-profit healthcare system. People all across the country are drowning in medical debt. America is the only wealthy country in the world that does not have universal healthcare. Instead, people pay an exorbitant amount of money to insurance companies to cover copays and deductibles (if they are lucky enough to be insured to begin with) and routinely face denials of coverage for life-saving treatments. Have I mentioned that my father died deeply in medical debt? This healthcare system is broken beyond repair and these insurance and pharmaceutical companies are criminal for profiting off our suffering. And the politicians who accept donations from them, Democrats and Republicans alike (including the rich old “Democratic” white man I ran against!) are criminals for propping up this broken system.
Losing my family. Not to put too fine a point on it, but it can be said that modern capitalism killed my family. My maternal grandpa died from brain cancer after working for years in asbestos-filled buildings. My maternal grandma suffered strokes after a lifetime of struggling with addiction. My paternal grandpa also died from a stroke, separated from his family and spending much of his life at sea. My paternal grandma, and my father and his sister, all died from pulmonary pathologies related to their lifetimes of smoking cigarettes — but all the smoking, drinking and sugar consumption was an effort to medicate the trauma they had experienced. Living in our modern world is traumatic! We are natural creatures, and we are meant to live the way our indigenous ancestors did. We are meant to be free, to live in harmony and connection with the land and with our families and communities, not to be these disjointed automatons, trading all our time for money, looking at screens, and finding ways to temporarily escape the pain of it all.
White supremacy, misogyny, and all forms of bigotry. It bothers me that people have to deal with discrimination daily. It bothers me that there is such systemic inequality that people of color are killed in the streets by police officers and incarcerated in such large numbers. It bothers me that so many of our brothers and sisters are locked up, especially for nonviolent crimes, when the economic system we live in makes it so hard for so many of us to succeed. It bothers me that women are not treated or paid equally, and it pisses me off that the right to choose is currently under attack by extremists. It bothers me that LGBTQ+ people still do not enjoy full citizenship and it bothers me that there is so much violence and discrimination against trans people especially. I feel angry about the separation of families at the US-Mexico border, and about discrimination against Latinx people, Muslims in America, and immigrants of all types. We all come from somewhere. It bothers me above all that these systems and ideologies of oppression find subtle ways of reproducing themselves in all our psyches, no matter how conscious we are.
The climate crisis. It really bothers me that, due mostly to greed and profit-driven action, our planet is being made uninhabitable. It bothers me that so many people around the world (including yours truly) have been displaced from our homes due to climate-crisis-fueled disasters like wildfires, floods, hurricanes and droughts. It bothers me that the survival of future generations is being jeopardized by our actions. It bothers me that, while most people recognize this and would act differently if given better choices, most of our elected leaders all over the world (again, including most Democrats in Congress) are neglecting to take the bold action we need to really invest in sustainability. Special shout-out to Joe Manchin and Kyrsten Sinema for being the the biggest sell-outs among Senate Democrats and blocking passage of the full Build Back Better Act because of their ties to fossil fuel companies. Again, it is a travesty how much big money runs the show in American politics.
War and empire. It bothers me that so many people around the world are being driven from their homelands and deprived of self-determination and sovereignty. I feel especially angry that the United States has directly participated in anti-democratic coups and war crimes all around the world (again, mostly for economic gain). It bothers me that the United States government supports the atrocities being perpetrated in Palestine by the Israeli government and in Yemen by the Saudi government. I feel angry that the US military has perpetuated geopolitical crises in Ethiopia, Iran, Venezuela, Western Sahara, and elsewhere. It also bothers me that so many people are starving and suffering and displaced, especially across the Global South, and that the wealthiest nation on the planet isn’t doing more to support justice and self-determination. In so many places — Haiti, Syria, Somalia, the Democratic Republic of Congo, Libya, the Sahel, the Central African Republic, Burkina Faso, and many other countries around the world — there is massive suffering, and most of it could be eased if the United States stood for a more equitable distribution of global resources.
People hurting women and children. It bothers me that there are men out there who physically harm women and children. Domestic violence bothers me. I also feel angry that there are people who emotionally abuse their spouses and children.
Addiction. I feel angry about the power addiction and compulsive behaviors have on most of us. I feel angry about losing my dad to cancer, and I relate that to all his years of smoking and drinking and eating unhealthily and following his addictions, which were mostly survival strategies he adopted in response to stress and trauma. I feel angry when I think of how hard it was for me to quit smoking, and when I think of how much sway nicotine, alcohol, television, sugar, sex, spending, and other addictive behaviors can have in so many of our lives. I feel angry about the industries that exist to prey on this aspect of human nature, and again, I am bothered by these companies’ political power and influence on the behavior of our lawmakers. I feel angry about how many children have lost out on full connection with their parents through addiction, and how many young people learn to be addicts as well.
Getting cancer! I feel angry that I had to go through this, and that no matter how fortunate I may be and how much longevity I may achieve, this cancer has become a major character in my life and in my fears. Whatever caused it, I feel angry to think about all the toxic substances that I’ve either personally introduced into my system or been unwittingly exposed to as an artifact of modern urban life. I feel angry about our air and groundwater being industrially polluted. I feel angry about our toxic food system. I feel angry that there are people trying to maintain the status quo and prevent us all from achieving the major political change we need. And I feel angry that so many others are suffering just like me.
Surely there is more! But this has gotten to be pretty long already. Thanks for hanging in there with me. I’ll keep working with this anger prompt in my journaling and meditation, and I humbly invite you to consider it as well.
What steams your clams? What makes you feel angry? What boundaries have been crossed? Leave a comment or drop me a line and let me know what you're feeling!
Whatever your heart song sounds like, I uplift your sacred tune. I’m glad to stand beside you and sing together in this cosmic choir!
Big hugs and big love,
Nils
