In the early months and years after my diagnosis, I wanted everyone to know about it. I was in such shock about this revelation that anyone – including me?! – could get lung cancer. I think I needed others to share my shock and join me on my traumatic and steep learning curve.

Everywhere I went, I overshared. No one was safe from hearing about my diagnosis and lung cancer in general. If I assaulted you with all of this, I’m sorry. Also, does anyone know where I pick up my trophy for instigating the most socially awkward moments by a single person ever?

I’m reflecting on this now, because I’ve done an almost complete 180. Not only don’t I have a visceral need to share with the supermarket checker and anyone else in my path, but I’ll go out of my way to conceal it. (I’m happy to share with others who seek me out for support, but otherwise, I’m so done with being a live action lung cancer PSA.) 

In December, a slightly dodgy scan report put my new ethos to the test. Over the last few years I’ve had such a remarkable run of good reports that I’ve stopped writing about them. But the last scan report noted a new spot. It was small and ambiguous, and I expected my oncologist to downplay it and say “NBD, we’ll just watch and wait.” Instead, even though he said it could be nothing, he started discussing possible treatment alternatives and suggested rescanning in 8 weeks rather than the usual 12+. 

Oh, so, not so much with the downplaying then?

My stomach fell through the floor, and a feeling I recognized but hadn’t felt in several years surged through my body: mortal – feral – fear. “Shit,” I thought to myself, “I’m out of practice — how do I cope with this again?” 

In earlier years with this diagnosis, whenever I hit a bump like this, I shouted from the rooftops; raising the visibility of my struggle helped rally the support I needed. This time I took more than 24 hours before conjuring the wherewithal to even share with my husband.

Over the past 8 weeks I continued to keep my cards very close to my chest, sharing only with a handful of people, and I am only sharing here now after I’ve had several days to digest the results (Update #31: the new spot has cleared up and my oncologist is reverting to the quarterly scan schedule). I can’t pinpoint exactly what changed or when, or even why. I can only say that living with this diagnosis is a constantly evolving process. There’s no such thing as “figuring it out.” As much as I want to move on, I don’t get to – the diagnosis is the constant, and I keep changing around it. I’m still a Stage IV lung cancer patient, but Stage IV Lisa in year one is so different from Stage IV Lisa in year twelve. It’s like nobody ever said: The more things stay the same, the more they change. 

The post The More Things Stay the Same, the More They Change (Update #31) appeared first on Every Breath I Take.

I sustained this fear for a very long time. When people would push positivity, I’d push back with my charming doom and gloom. 

Alas, it’s been over 11 years now, and slowly — ever so freaking slowly — I’m releasing my grip on the fear. 

One of the most difficult places to release fear is around scan time. The wait time between when I have the scan and when I meet with the doctor to discuss the results is basically just my fear in overdrive contemplating every threatening possibility on a loop (with breaks only for being an unreasonable moody bitch to anyone in my orbit). It helps hugely that the radiologist usually releases their report on MyHealth within a day or so, but still, nothing’s certain until I hear my oncologist’s review.

For this reason, I have always broken the hospital protocol which prefers to have at least a week gap between the scan and the post-scan appointment to discuss the scan results, and scheduled my doctor’s appointment within 48 hours after the scan. I have done this for over 50 rounds of scans. 

I recently got a message from the hospital. They scheduled my next scans, and the follow up with the doc 10 days later. 10 days?!? “Oh, helllll no,” I thought to myself as I started to pick up the phone. And then, out of nowhere, I set the phone back down. ”Maybe I can do this,” I thought.

The angel on one shoulder cheered. “Yes, Lisa! Do it! Believe the thing that so many people want you to believe – you’re fine, these scans are NBD!” The devil on the other shoulder said “Don’t get cocky. Stay fearful, stay vigilant.” 

Of course, maybe it’s the devil that’s tempting me into false confidence and the angel that’s protecting me from dangerous complacency. I don’t know. Clearly, I haven’t exactly achieved full confidence in my health, but it seems like writing a blog post examining whether or not I’m becoming complacent about it is fair evidence that I’m not? Overthinking FTW! 

Perhaps the line between confidence and complacency will always be a little fuzzy for me. I don’t think it’s possible to ever revert to my pre-diagnosis self who casually went for medical appointments (even a lung biopsy!) and dispassionately waited for results. But after over 11 years of white-knuckling 50+ rounds of scans, it feels good to experiment with a slightly different approach.

The post Confident or Complacent? (Update #30) appeared first on Every Breath I Take.

The event was fantastic and included presentations by top experts, tours of the labs where they are researching our cancer model project biospecimens, and a keynote by Dr. Ross Camidge. But, I must confess that I was a bit reluctant to help organize and participate this time around. Back in 2019-20, when we were originally planning, I was very enthusiastic about the conference. But for myriad reasons, my enthusiasm had dampened somewhat. Frankly, I boarded my flight to the conference thinking I was doing this for my fellow ROS1ders, not expecting to get much out of it myself.

But, the second I walked into the conference room, everything changed. 

Over the past ten years, I’ve attended countless cancer-related meetings. I’ve never been in a room with more than 5 fellow ROS1+ patients. Our low profile is why we founded The ROS1ders in 2015. A few of us ROS1+ patients connected and realized no one was paying attention to our rare biomarker. We were going to have to fight for ourselves. 

The idea of walking into a conference room bursting with 50 other ROS1der patients (and another 50 ROS1der caregivers) was a pipe dream in 2015 when we founded. But in 2024, it became a reality, and it was remarkable.

Witnessing the robust online community of our private ROS1ders Facebook group has been gratifying. But seeing these people in person – engaging, sharing, and supporting one another – was another thing entirely. I’m not much of a crier, but I sat in the far back row and teared up. To see the fruition of almost a decade of work, building a community to self-advocate, support, and self-rescue, was pretty profound. 

Sometimes it can be easy to doubt the difference we can make. Especially working in the cancer space, where we lose too many, too often, it’s easy to lose faith that anything really matters. In the end, the conference was a huge reminder and a physical manifestation of one of my favorite quotes by Margaret Mead: “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

In honor of Lung Cancer Awareness Month, I am offering my annual Zentangle class fundraiser for lung cancer research. We will be making tangled gift card holders — a great way to personalize a gift card or cash present for the holidays! This class is appropriate for all levels, including those who have never tried Zentangle before. All you need is a willingness to set aside 60-90 minutes to relax and create, plus some basic supplies. The class will be on Zoom, on Saturday 11/16 at 2pm Pacific Time (I will record it for those who cannot attend live). If you would like to learn more and sign up, please go here. 

There is no charge for this class, and I welcome everyone. However, if you are able, I would be grateful if you donated to help fund lung cancer research. (Even if you’re not interested in the class, you are of course still welcome to donate!). Remember, each of us really can make a difference, and it’s even better if we can have a little relaxing fun while doing it. Hope to see you there, and many thanks for your support. 

The post Making a Difference – THE ROS1ders PRIME Summit and My Annual LCAM Fundraiser appeared first on Every Breath I Take.

Well, if you can guess where this is going, you may know me better than I know myself.  Parenting under the shadow of a terminal diagnosis can change things, sometimes in surprising ways. 

About two years ago, my teen daughter asked if we could get matching tattoos. “Haha – No,” was my response. My position brooked no quarter, and she didn’t push – much. But as her departure for college grew ever-nearer, I felt myself softening. 

Most teens – I hear – pull away from their parents. But for children with a seriously ill parent, it’s simply too risky to pull away. They don’t have the confidence that the parent will still be there when they’re ready to re-engage. (This disruption of a natural and important phase of child development is another example of how cancer doesn’t just affect the patient.) 

So, for better, and occasionally for worse, my daughter and I are uncommonly close. And as she’s transitioning into adulthood, our relationship has become much more reciprocal. It’s lovely, and a bit surprising, to receive support back from the child I’ve tried to shepard through some rough waters all these years. I found myself thinking: well, maaaaaybe it’d be nice for both of us to have an external manifestation of the deep bond we’ve forged internally over the years.

One day I shocked her by conceding, “if you can figure out something I’d actually want on my body permanently, I’ll do it.” I’m notoriously picky about aesthetic things, so I doubted we’d ever settle on something, but it was a challenge she happily accepted. 

For months she threw out various ideas and I embraced my inner Goldilocks, rejecting them all: too ugly, too big, too small, too predictable, nope, nope, nope. And then, this summer, she texted me, “how about a manta ray?” 

We had gone swimming with manta rays in Hawaii the previous year. It was a special memory, and they’re beautiful creatures. Hmmm. “Maybe,” I said, “draw up some sketches.” 

Then I researched and learned that in Hawaiian culture, manta rays are revered as ancestral guardians offering strength, protection, and healing. Since my diagnosis, I’ve often looked to my ancestors for strength, protection, and healing. If I am to pass prematurely, I really like the idea that she can look to a manta ray symbol as a reminder that I can still help guide her, too. Also, manta rays, with their unique “flying underwater” movement and high intelligence (smartest fish, who knew?), also signify moving through life with grace and curiosity. Those are nice values to be reminded of. I had to admit, this was feeling pretty “right.”

As the summer progressed and every day felt like a countdown to the heart-wrenching college drop-off, we inched closer to committing, but made no specific plans. Then, with just 2 weeks to go, while up in the Mendocino area, we wandered into Triangle Tattoo & Museum in Fort Bragg. TBH, I had reservations because it looked a bit like the set for a movie about a drunken sailor getting some regrettable ink. But inside, we met the awesome Madame Chinchilla, her chihuahua Chiquita Bonita, Niki Needles, and Loch Nic Monster (Nicola). These 3 (4) ladies instantly won us over. Twenty-four hours later, the deed was done. 

For us, part of the college packing and preparations involved several tearful conversations about what would happen if my health deteriorated while she was away at school. We have contingency plans, but also a tacit acknowledgement that sometimes life laughs at our plans. These simple tattoos will hopefully remind us that the connection we have forged will always be there to help us navigate with grace and curiosity, thanks to the strength, protection and healing we offer each other. It’s a small external thing — the real legacy is internal.

*Part of my disinterest was due to a well-known prohibition against voluntary tattoos in Jewish law. I’m not what you would call a “Torah observant Jew,” but this prohibition has created a long-lasting general sense of taboo in the Jewish community, even amongst many of us who are not religious. Somehow, along the way, a rumor spread that Jews with tattoos would not be allowed to be buried in a Jewish cemetery. In fact, Eric reminded me that when we purchased our burial plots several years ago, we were asked whether we had any tattoos. Despite these rumors and cultural norms/practices, it is my understanding that the prohibition against voluntary tattoos is no more or less important than many other prohibitions (like eating unkosher food, or working on Shabbat). If Jewish cemeteries only permitted Jews who followed all the laws, well, let’s just say that wouldn’t be great for the Jewish cemetery business. So I’m going to trust that my unkosher ass will still be able to claim her burial plot. But, I also know a few Jewish lawyers who can argue my case for me post-mortem, if need be. 

The post Inked! Why I Got a Tattoo with My Daughter appeared first on Every Breath I Take.

In order to help me make sense of my experience, I worked with a therapist who specializes in “meaning-based” therapy developed by neurologist and psychologist Viktor Frankel after his time in a Nazi concentration camp. Frankel observed that those who had a clear sense of their purpose and meaning coped with their circumstances better (as Nietzche said, “He who has a why to live can bear almost any how”). 

With the therapist, I worked through Frankel’s specific protocol designed to help people identify what gives their life meaning. Each week we focused on different areas where one might derive meaning. It could be via one’s work, or via connections with other people, or via beautiful experiences, etc. This protocol was a nice exercise, but to be honest, I was still struggling to reconcile what felt like my fairly insignificant sources of meaning relative to the incomprehensibly, relentlessly, infinite universe I saw during my 6 hour trip. My sources of meaning matter a great deal to me, sure; but what do they really matter? I’m a single grain of sand, a drop in the ocean, a single star in an endless universe.

I kept asking: How does looking at the ocean or hiking in an enormous forest and feeling so small help people find meaning? None of the typical, but orthogonal, answers about beauty and interconnectedness addressed the question. [Sorry, you apparently can take the girl out of the law, but you can’t take the (annoyingly analytical) law out of the girl.] Finally, the lead doc on the study, Dr. Tony, took a different tack that helped me make some headway. He said “maybe when people see things like this, instead of feeling small, they unconsciously tune into the power and majesty and recognize it in themselves.” He told me “let yourself be big.” I find this a little hard to wrap my head around, but it at least directly addresses my question about this fundamental paradox. 

Dr. Tony also gently suggested I might stop trying so hard. Reader, you will not be surprised to hear that I have received this suggestion before. I’m a chronic over-tryer. Frankel’s book, the foundation for his therapeutic approach, is titled “Man’s Search for Meaning.” I took this as a very high-stakes directive: Figure out your mission! But maybe, instead of searching diligently, sometimes things are best figured out by allowing them to come to you. So, now I’m trying really hard to not try so hard (I know, I have a problem).

It’s not where I expected to land, and it’s a lot more amorphous and passive than I would prefer. But I am tired, and ready for a respite from trying to figure out the meaning of the universe. In our last conversation, Dr. Tony gave me a new assignment, “let the ocean work on you.” Yes, sir.  Staring at the ocean and allowing it to do the work on me is finally a directive I can fulfill. 

The post Part 2: I Did Another Thing — Lisa’s Search for Meaning appeared first on Every Breath I Take.

Back in January, I tried psilocybin (aka “magic mushrooms”). I wouldn’t ordinarily admit to partaking of an illegal Schedule I substance on a public blog, but in this case, I received the drug legally as a participant in a clinical trial run by the University of Washington. 

The clinical trial studied the effects of psilocybin on metastatic cancer-related anxiety. Unsurprisingly, anxiety is one of those fun bonuses many cancer patients experience – another “gift” of cancer, yay! Overachiever that I am, I got a head start on things, honing my anxiety skills long before my cancer diagnosis.  

Art by Natalie Dee

I signed up for this trial after hearing many glowing reports about psilocybin, not just from fringe sources, but mainstream ones, too (looking at you Michael Pollan and Lisa Ling). I had hoped to come back to this blog in February with my own glowing report. I had high (natch) hopes of sharing deep insights into the meaning of life. But, I found I had little to say. My experience wasn’t bad, it just wasn’t much of anything. I spent 6 hours mostly seeing multicolored fractals peeling out into infinity. 

Photo by Kent

Like, really? I knew a divine experience wasn’t guaranteed, but I had hoped for more than this. I wound up feeling confused, frustrated and disappointed. Did I do it wrong? Why did everyone else seem to have elaborate experiences that revealed the meaning of life, but I got stuck staring at the equivalent of a cheesy poster in a head shop on Telegraph Ave.? And why do others find glimpses of infinity reassuring when it freaks me the F out? Was there something I was supposed to understand from the imagery that evaded me? 

I tried really earnestly to understand my experience. I spoke with the principal researcher and others with knowledge about psilocybin, I read books, I hit up Google, I journaled, I meditated. As my daughter might say, I did “the most.” But instead of improving my understanding, I found myself wading into a smidgen of an existential crisis, questioning the meaning of everything. Whoopsie daisy. 

Don’t worry. I’m fine – just perhaps a hair too analytical for psychedelics? Anyhoo, for the second time since my cancer diagnosis, an oncologist referred me out for specialized therapy — this time a unique 6 session protocol based on Viktor Frankl’s “meaning-based” approach. These referrals are hard to get, y’all! If I ever get referred out a third time, I expect a free set of steak knives.

In Part 2 I’ll discuss my experience with meaning-based therapy and where I’m at ~7 months after taking psilocybin.

The post Part 1: I Did a Thing (Psilocybin) appeared first on Every Breath I Take.

I’m often explicitly encouraged by lung cancer advocacy organizations, “tell us when you have a big milestone to celebrate so we can splash it on social media.” So here it is: my youngest child graduated high school last week!

I couldn’t be more proud of this kid (if you want to read about her college plans, you can check out this post). I love her beyond all reason. She was in 2nd grade when I was diagnosed, and I have never taken it for granted that I would get to see her high school graduation. I know far too many friends who didn’t get this gift. Of course, I am grateful. Of course, I am celebrating.  

And also, I am not. 

I am greedy. 

When she was in 2nd grade, I prayed just to make it to her older brother’s elementary school graduation. And then to hers. And then to his bar mitzvah and middle school graduation. And then to hers. And then to his high school graduation, etc. The finish line is a moving target, and it’s never enough. 

I want a lifetime of milestones. So even as I celebrate one, I experience a melancholy, a fearful wistfulness. The clock immediately starts again, and I find myself in the same place wondering “will I make it to the next one?” 

I get constant reminders that I may not. Two ROS1der friends who were diagnosed within a few months of me died in the last month. Two other fellow long-term lung cancer patients are currently in hospice and I’m doing the familiar vigil, checking in with (the ever-dwindling) circle of compatriots, scrolling social media for updates. A fifth friend is heading into a risky and challenging clinical trial this month, and it makes me nauseous with nervousness on her behalf just thinking about it.

Although I live outwardly as if I’m part of the non-terminal civilian world, the threat of this disease is as visceral and omnipresent as ever for me. I just don’t talk about it much anymore because – well, for a lot of reasons – but mostly because I’m just so_fucking_ tired_ of talking about it. 

So, yeah. I’m not great at unqualified feel-good posts. This is the best I can muster for you: “Yay! I made it to both my kids’ high school graduations! They’re amazing. I’m proud. I’m grateful. And, I’m so, SO, lucky!”*

*And also this still kinda sucks.

The post For a Terminal Cancer Patient, Good News Always has an Asterisk appeared first on Every Breath I Take.

photo by Quinn Dumbrowski

As I have mentioned previously, unlike many cancer patients, I make it a point not to mark my “cancerversaries.” The day I was diagnosed was pretty freaking terrible, and I take Deepak Chopra’s caution to heart: “If your attention is attracted to negative situations and emotions, then they will grow in your awareness.” I don’t need to grow my awareness of negative situations, I’m all full up, thankyouverymuch. 

Today, however, marks 10 years, and I’ve found myself unable to divert my attention, especially because I recently lost one of the two people who were at my bedside that fateful day. As we all know, the people who show up on our darkest days mean everything. So, on this anniversary of a terrible day, which a very special person made a little less terrible, I’d like to share an excerpt of the eulogy I wrote to honor Mark, one of my guardian angels. (I think Mark would very much dislike being referred to as a guardian angel, but he’s not here, to either complain or to help me come up with a better term, so I’ll just deal with that whenever I join him on the other side.)

____________________________________________ 

When I was 6, my family moved to Palm Springs. We had no relatives nearby, but my parents met another couple, Mark and Linda, who had also recently relocated to the desert with their children. We quickly became each others’ adopted families. 

Our families shared countless holidays, vacations and every day experiences together. Mark was an important figure in my life growing up; someone I trusted, enjoyed and loved. But, I never expected to need and rely upon him the way I would come to later, decades into adulthood.

In late December 2013, while I was visiting my parents in Southern California, Mark popped over. I was feeling awful despite months of back-and-forth with my primary care doc to treat an incessant cough. Mark (a retired MD) took one look at me and said, “Stop messing around with your PCP and go to a pulmonologist, asap.” I’d never been to a pulmonologist before, but Mark really pushed me, which was very unusual for him, so I listened. I saw the pulmonologist on January 3, 2014. One week later I would be diagnosed with Stage IV lung cancer. 

As luck (or fate) would have it, Mark was up in Northern California on January 10, 2014 and able to pop over for this, too. He sat in the waiting room with me before my biopsy, never letting on how serious this might be, though he must have been concerned (I was clueless). And, he was at my bedside along with Eric when I woke up and received my diagnosis. When the hospital started preparing to discharge me, Mark alerted them to my alarming heart rate and oxygen saturation, prompting them instead to move me to the ICU, where they started my treatment the next day. My parents flew in, and Mark held all our hands, translating all the medical jargon, accompanying us to appointments, and shepherding us all through some of the most difficult days of our lives. 

At so many junctures in my lung cancer journey, Mark’s intelligence and compassion made a crucial difference. I shudder to think of what would have happened if Mark hadn’t pushed me to escalate to a pulmonolgist when he did, if he hadn’t prompted the hospital to admit me to the ICU instead of sending me home, or if he hadn’t escorted me to a second opinion where I learned the critical importance of my cancer’s ROS1+ biomarker. It is my sincere belief that, but for Mark, my prognosis, as dire as it was, would have been much worse. To put it bluntly, without Mark, I likely would not be alive today. What greater gift can one person give another? I think of this often, with a gratitude far exceeding my facility with words.

Mark continued to be a medical sherpa (helping interpret medical reports, discussing treatment options, etc.) for me and so many others over the years, even while he struggled with his own health issues. We knew for years that his health was precarious and are grateful that he had as many good years as he did. I hope Mark’s family and doctors know that all the years that they took care of him, they benefited not only Mark personally, but allowed Mark to take care of so many others. Because you helped one man, my children still have their mother, and I, in turn, am trying to help many others with my cancer advocacy work. I think this is what Ram Dass meant when he said “we’re all just walking each other home.” 

I know Mark didn’t believe in an afterlife, but I hope he was wrong. It makes me chuckle to think of him floating around with a pair of angel wings (which would annoy the crap out of him), while he keeps tabs on his loved ones in between doing heavenly Suduko and Ken Ken puzzles. I will strive to make his memory a blessing by following his example: making the best of the sometimes shitty hand that fate deals out, helping others while I’m at it, and keeping a sense of humor through it all. Rock your wings, Mark – you earned them. Thank you for being one of my guardian angels.

The post Honoring one of my Guardian Angels on my 10 Year “Cancerversary” appeared first on Every Breath I Take.

Photo by Mike Labrum on Unsplash

Traditional Chinese Medicine (“TCM”) associates the lungs with grief, so when too much grief is present, it can weaken the lungs. I don’t necessarily give this philosophy a ton of credence, but I nevertheless worry about how experiencing grief can undermine my health.

This is obviously a bit of a challenge, as grief is fairly unavoidable when I spend so much of my time around terminal cancer patients. I have tried to train myself to confront grief when it arises, so that I can metabolize and release it as quickly as possible. Suppressing grief feels dangerously toxic, both emotionally and potentially physically for me. 

I felt like I’d gotten pretty decent at navigating all the grief landmines in my life since my diagnosis, but the days and weeks since October 7th have thrown me a curveball. I’ve been in a near constant state of sadness since then. It’s more than I can process efficiently. I can’t shake my grief, and that leaves me with the added fear for my health. As I headed into my quarterly scan appointment, I wondered: has this grief tipped the delicate balance my body’s been able to miraculously manage for several years now? 

Fortunately, the answer is no. While the world unravels for so many, my personal miracle continues. My scans remain stable (Update #29). 

After I got my scan results, I came home and finished reading a novel that coincidentally explored grief. In the story, one character couldn’t make sense of how the other characters were able to accept a terrible loss, until it was explained to her: “Grief is love.” I’d heard this sentiment before, but never so succinctly. It resonated. People only grieve for things they care about deeply; grief is, at its core, an expression of love. I set down the book and let it sink in. Perhaps my approach of confronting grief in order to expel it as efficiently as possible is only part of the key to processing this difficult emotion most healthfully. I can go a step further and reframe my grief – slowing down to feel not just the pain, but also the underlying love. In this way, rather than fearing grief, I can instead transform it, by remembering that it is love.

The post Grief is Love (Update #29) appeared first on Every Breath I Take.

For the fundraiser I will be teaching a simple Zentangle class. I put the emphasis on simple because I really want this class to be as relaxing and meditative as possible — who couldn’t use a bit more of that in their life? (I know I could.) We will create a “monotangle” tile, with the option to add color if you would find that soothing. Here are some examples: 

All you need to participate in this class is paper, pen, pencil, blender/qtip, and a willingness to set aside 60-90 minutes to relax (plus watercolors or water-based markers or pencils and a brush if you desire to add color). No experience necessary! The class will be on Zoom, on Sunday 11/19 at 10am Pacific time (I will record it for those who cannot attend live). If you would like join, please sign up here (so I know to whom to send the Zoom link). 

There is no charge for this class, but if you are able, I would be so grateful if you donated to help fund lung cancer research. (Even if you’re not interested in the class, you are of course still welcome to donate!)  As you know, this is a cause, both literally and figuratively close to my heart. For reasons nobody understands, I’ve been an exceptional responder to my medication, but the majority of my compatriots are not as lucky. We need more research and treatment options. Lung cancer research is notoriously underfunded. The ROS1ders (a nonprofit I co-founded) is funding research into ROS1+ cancers so all patients can one day have great treatment options. This year we funded two $75k research grants; next year we ambitiously aim to raise $225k so we can fund three! Any and all donations are very much appreciated – thank you!

The post LCAM 2023 FUNdraiser – Join me for a Zentangle class! appeared first on Every Breath I Take.