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.

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.

Photo by Carrie

I got braces a couple weeks ago. I still can’t quite wrap my head around it. 

I’ve known I needed them for years. I was in the midst of treatment for TMJ when I got diagnosed with lung cancer and my TMJ doc dropped me like a hot potato, figuring I was a goner. It was hard to disagree, so I gave up on the treatment. It seemed most practical to just limp along with my ancient nightguard until I was buried with it. How could I think of investing the time and money into correcting such a problem when I might only have months to live? 

I couldn’t. For many years, facing my mortality in 3 month scan increments had a way of training me not to invest too much into anything that I couldn’t reap the rewards from in 12 weeks or less. Fabulous travel on the nearer term? – fantastic! Art classes that I could take over a period of several months? – maybe. Braces that cost thousands, take a year+ and benefit me and only me? – absolutely not. 

The average person makes so many investments to benefit their future selves. Education. Seeing the dentist. Buying a car. But when staring down a terminal illness, the calculus shifts dramatically. Yet somehow, as the months and years of relative stability have ticked by for me, they’ve also chipped away at my reticence to invest in myself, to believe I’m still worth investing in. 

I’ve gotten to do some amazing things post diagnosis, but I think perhaps the boldest thing I have done may also be amongst the most mundane: Braces. Who knew they could be so incredibly life affirming? 

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*Update #28: I was a little concerned I’d tempted the fates, getting the braces. This was the first round of scans I’ve done with my Invisalign trays in (bonus: they’re CT and MRI compatible!). I’m happy to report that my scans last week show continued stability.

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Of course, my scan results are just a piece of the good news. In some ways, the equally good news is that I haven’t been blogging because I’ve been pretty busy living. It’s been an exciting 6 months. 

I turned 50 (!) in October — a milestone birthday I didn’t expect to see. It coincided with the 30th anniversary of my junior year abroad, so I celebrated by reuniting with some of my roommates from that year in Jerusalem and also traveled to Jordan for the first time. Super fun. Here are a few pics from that trip. 

Me and Heather in Petra

Petra

Our campsite in Wadi Rum

Uber Black in Wadi Rum — we rode thru the pitch black desert to our campsite in this Jeep with a 25 watt light bulb for a headlight.

Me and Heather in Wadi Rum

Me and my new friend Ali.

Wadi Rum hike

Check out the free air freshener that came with our car rental in Jordan.

After that trip, I came home for a restful 48 hours (lol) and then departed for a 2 week road trip through the Southwest with Eric to celebrate our 25th (!) wedding anniversary. Seeing some of these incredible national parks has been on my wishlist for a while, and as you can see from the pics, it did not disappoint.

Goblin State Park in Utah

Arches Nat’l Park

Arches Nat’l Park

Canyonlands Nat’l Park

Monument Valley

Horseshoe Bend

Horseshoe Bend

Antelope Canyon

Antelope Canyon

Antelope Canyon

Grand Canyon

Grand Canyon

In the Fall, Eric and I also made the decision to invest in a dream property in Mendocino, one of our very favorite places on the planet. So, we’re now knee-deep in a renovation project, which is awesome, but overwhelming.

It’s cramazing (crazy amazing) that my diagnosis has clearly, in some ways, taken a back seat to a lot of other things going on in my life. Many take this to mean that I’m somehow “done,” cancer in my rearview mirror. That’s not the case.

I’m still in treatment. I’m still Stage IV. My daily routines are shaped by my treatment protocols. My children’s lives are still affected daily by growing up with a parent with a terminal diagnosis. And yet, here I am reaching all these milestones I never dreamt I’d have a chance to reach when I was diagnosed over 9 years ago. In fact, it took me years to even dare to dream of anything more than a few weeks out. How wrong that approach turned out to be. I’ve learned that while I’ll remain a cancer patient for the rest of my life, and my future is more tenuous than most, I might as well go ahead and make those plans. I can still
dream big. 

Befitting message outside the Peres Center for Peace and Innovation in Tel Aviv.

The post Update 27: Dream Big appeared first on Every Breath I Take.

Photo by Tabu_Soro

There’s a thing that happened when I got diagnosed with cancer that I only recently stopped doing. I compared myself to other cancer patients. It was a way to grasp for straws when I was standing in quicksand. 

I didn’t spend a ton of time thinking about the people I was faring better than (nor, strangely, did I focus on healthy people who weren’t diagnosed at all). Instead, I often wondered and wished I could be as lucky as some others that seemed to be doing better than me: patients who had gotten diagnosed at slightly earlier “curable” stages, fellow “incurable” patients who responded so well they took extended (permanent?) treatment breaks, fellow “incurables” that somehow became eligible for experimental, but potentially “curative” surgery. How could I be like them? I was envious. I definitely envied. If you looked very closely, my dark brown eyes had specks of green.

What being in this for almost 9 years now has shown me is that I’m an idiot (and also a slow learner). I’ve been here so much longer than expected that I’ve seen many of those I envied take a turn for the worse, often much worse, while I still somehow chug along here (Update #26 my scans are still stable, knock wood). 

I used to think envy was bad because it’s just “not nice.” The bible says not to do it. G-d, like my 11th grade Spanish teacher, just wanted me to keep my eyes on my own damn paper. What I’ve now come to appreciate is that envy is just simply a tremendous waste of fucking time. The other student’s paper might have the wrong answers, the other patient who is doing better than me today might be doing worse tomorrow. Come to think of it, G-d doesn’t seem particularly concerned about “niceness” in the bible. Maybe G-d is just an efficiency expert?

Basically, I’m not here to lecture anyone on how to be a better person – my credentials are questionable there anyhow. But I am getting to be something of an expert in how to be a “terminal” cancer patient, and my advice is this: keep your eyes on your own damn paper, you may be fare better than you expect! If you catch yourself feeling envious of other patients, try to remind yourself the future is unknown for us all and try to focus on your own wild and precious life. 

____________________________

Postscript: As we approach November, Lung Cancer Awareness Month, I am gearing up to host my annual fundraiser. Lung cancer kills more patients worldwide than the next 3 most common cancers (breast, colon and prostate) combined. Unfortunately, due to the unfair and inaccurate stigma around lung cancer, it receives a paltry fraction of the funding most other cancers receive. 

For my fundraiser, I will be teaching an art class, appropriate for all levels. We will be decorating small paper tiles which we will make into beautiful corner bookmarks that can be presented on a greeting card. You can see a few examples here and here. These are just a couple of examples, but the sky is the limit in terms of how to tangle and decorate these. I will try to create some others before the class to show you alternative options (I’m thinking monograms, monotangles, holiday themes, bday theme, etc.). I picked this project because I think these bookmarks make thoughtful card/gifts that you may choose to make for the holiday season. 

 The class will be held via Zoom from 10:30am-12pm PT on November 19 (if you cannot attend live, I can share a recording). If you would like to sign up, please go here.  All the supplies needed for this class are detailed in the signup form. If you are interested in this class, but cannot attend live, please still sign up. I will share the recording with everyone who has signed up. 

If you’re not interested in the class, but would still like to donate to support lung cancer research, please go here. Any and all donations are very much appreciated – thank you!

The post Update 26: Envy (and an LCAM FUNdraiser announcement!) appeared first on Every Breath I Take.

A couple of weeks ago, I shared with a community of fellow cancer patients that I had another round of good scans (that makes an 8+ years since I was diagnosed). Amidst all the cheers and posts of support, someone politely asked, “but are you NED?”

NED is an acronym for “no evidence of disease,” and it’s the holy grail for most Stage IV cancer patients. Since “cured” is, by definition, off the table for Stage IV patients, NED seems like the next best thing. We all want NED. I have a friend who, having achieved NED after a particularly treacherous journey, threw a party featuring a blowup doll officially christened “Ned.”

But, NED isn’t always all he’s (it’s) cracked up to be.

An oncologist tried to explain this to me once. It was about a year after my diagnosis, and my scans were looking good, but still showed a few stubborn nodules. I felt desperate to get them out and get to NED. I channeled Lady Macbeth, pacing in the exam room thinking, “Out, damn spot(s)! Out, I say!” My oncologist tried to reassure me, “Lisa, a lot of patients get hung up on ‘NED,’ but there’s not necessarily a correlation between achieving NED and survival time. You’re doing great. Don’t worry about it.” 

Stupid, patronizing, doc, I thought – what did they know anyway? I mean, yeah, they were a genius chief of thoracic oncology at one of the top research hospitals in the world who’d treated hundreds of patients over decades. But I’d been at this for, like, MONTHS, now, and I knew I wanted, ney, needed, NED. Sexy, sexy, NED.

​​But of course, the doc knew what they were talking about. I’ve never fully gotten rid of my spots. Every single scan report I get mentions them. But – knock wood – I’m still here and doing remarkably well. Meanwhile, I’ve seen so many patients come up after me, achieve the prized NED, and then experience a drastic recurrence, sometimes dying just months later. 

How is it possible that someone like me, with visible spots, can fare better than someone who is NED (no visible spots)? Well, cancer cells are microscopic; scans can only detect them when millions of them have collected and grown to a few millimeters or more. So, just because cancer isn’t evident on a scan, doesn’t mean it’s not there. And, it turns out that some spots can stay stable for years (or might even be something non-cancerous like scar tissue), while other spots can mushroom from undetectably microscopic to life-threatening in a matter of weeks. Achieving NED for a snapshot in time is not a reliable indicator of whether a patient’s spots fall into the former category or the latter. Sexy NED, it seems, can be an unpredictable bastard.

So, sure, it’d still be lovely to have perfectly clean scan reports. But, I’ll take thriving for 8+ years with imperfect reports over an unreliable NED any day. I’m a grown ass lady who’s doing pretty well alongside her damn spots. I’m just not that into NED anymore. I’m doing fine without him.

The post NED – I’m Not That Into Him (Update #25) appeared first on Every Breath I Take.

L-R: Me, Linnea, Samantha, Kelly

My friend Linnea Olson died today. She had lived with a Stage IV lung cancer diagnosis for over 16 years. She never achieved the holy grail of “NED” (no evidence of disease). She lived every inch of those 16+ years side-by-side with the cancer in her lungs, sometimes more prevalent than others, but never gone. Always fighting, she embraced the “warrior” and “battle” language quite literally. But somehow, along with her ferocious determination, she always spared a laugh (a fabulously contagious cackle actually), always had a twinkle in her eye. I think it’s that twinkle that made many of us think that, despite her horrendous odds, she could pull a trick out of her sleeve, that after participating in 6 phase 1 clinical trials (!), she’d manage to conjure another in the nick of time. 

Of course, as remarkable and twinkly as she was, she was in the end, a mortal, like the rest of us. There has been a lot said and written about what a groundbreaker she was, blogging, participating in so many clinical trials, advocating on Capitol Hill, giving a Ted talk, and so much more. I’ve known many lung cancer patient advocates, it’s a group just full of remarkable people, but I really can’t imagine another like Linnea. Respected, loved and admired by thousands, she was our de facto Queen.

I think that’s what’s rocking me the most. I’ve lost so many friends in the last 8 years. It’s always hard, but more and more the friends I lose are those who are behind me, diagnosed after me. There are ever fewer out in front, carrying the torch to light the way. I’ve lost one of my very few remaining light bearers.

My friend Sam texted me and said “we’re the long termers now.” And, ugh. That torch is heavy. Sometimes I want to set it down and walk away – not from life, but from staying involved in lung cancer advocacy. But, I wouldn’t feel right about that. I took the light from those carrying the torch in front of me when I desperately needed it; it helped me and now it’s my turn to pay it forward. It strikes me as simultaneously inappropriate and a poetically perfect way to carry on Linnea’s light by posting an Update (#25) here. After a questionable scan in August that had me pretty nervous, my scans this month were quite good. For those feeling the darkness of this terrible loss: keep going, it’s harder to see on days like this, but there is still light to pursue and share.  

Some of you might recognize the Jewish custom after someone passes of offering the sentiment “may their memory be for a blessing.” I think this is often misinterpreted to mean “may your fond memories of your loved one help you with your grief.” However, that’s not quite right. What this sentiment really references is the continued and future blessing that the whole world will derive as a result of that person’s legacy and example. I truly cannot think of anything that would better capture Linnea – may her memory be a blessing for us all to carry forward. 

The post Linnea Olson, Light Bearer: May her Memory be for a Blessing appeared first on Every Breath I Take.

I couldn’t think of what kind of photo would match this post, so here’s a random drawing I made a couple days ago.

I had scans last week. Everything still looks good, with the caveat that there is a small amount of fluid in my lungs that wasn’t there last time. This could indicate cancer activity, but my oncologist feels it’s most likely a side effect of my medication – the same side fun effect that causes my legs to inflate like balloons (so adorable). So, I’m trying to trust her and not stress out about it, especially because she so thoughtfully gave me something different to stress out about. She’s leaving her position treating patients to focus on her research. I need to find another oncologist. Shit.

I think of myself as quite a loyal, consistent person. But, here I am, looking for my 6th oncologist in 7.5 years. You may be wondering … 6 oncologists? WTF Lisa, you sure get around. Why are you such an oncologist slut? Here’s how that happened in a nutshell:

• #1 — Randomly assigned to me while I was in the ICU after my initial biopsy and diagnosis. Very good, but not a specialist in LC. Stayed for 1 year.
• #2 — Switched to an LC specialist at Stanford. Very good, but somewhat inaccessible. Stayed for 6 months.
• #3 — Switched to a community oncologist with a special interest in LC. Stayed for 4 years until he took an extended leave of absence.
• #4 & #5 — Switched to his partner, whom I like very much, but is more focused on breast cancer than lung cancer. So, I also added an LC specialist from UCSF. For 2 years I’ve had these two oncologists, going to UCSF for my scans and my community oncologist for labs and everything in between. Polyamory FTW.
• #6 — ??? (*Note: 1-6 do not include the second opinions I have sought a few times along the way.)

That’s a lot of doctor switches for someone who doesn’t feel comfortable with doctor searches. I was raised to give great deference to MDs. “Interviewing” them and negotiating a care protocol feels awkward and almost disrespectful to me. But my life is on the line here, so I have to force myself to pull up my big girl panties and do my best.

I wish there was a fool-proof recipe for selecting an oncologist. Google tells me to ask for referrals from my existing docs, but I don’t find that sufficient. My existing docs might not know the whole universe of options, or they may feel bound to refer within their own network. Google also tells me to ask questions like “how long have you practiced?” and “how many patients do you have with this diagnosis?” These questions are fine, but not as relevant in a situation where I have a rare diagnosis and treatments are very new.

FWIW, here are the things I look for in my oncologist:

1. Expertise in lung cancer, especially LC driven by a biomarker and eligible for targeted therapies like my ROS1+ cancer. If lacking this expertise, then willingness and experience collaborating with an expert is crucial.
2. Respect for me as a partner, not just a compliant patient. I know ROS1+ cancer is rare. I don’t expect even LC experts to be able to keep up to date on all the research for every possible biomarker out there. That’s why I am so involved in running The ROS1ders, where patients share updates from experts and trials around the world. I’m not an MD, but I know a lot about my disease and I need an oncologist who will respect, rather than resent or dismiss, that.
3. An excellent radiology department. I choose my oncologist with care, because that’s who I actually *see,* but it turns out that most major treatment decisions turn on the scan reports by the radiologists. 
4. Part of a hospital or group that has a tumor board or multidisciplinary team, so that if/when I have to make a treatment decision, I can get input from a variety of experts.
5. Patience with my interest in incorporating complementary practices. I take supplements, do acupuncture, play with my diet and exercise, etc. I want to be able to discuss this with my oncologist, not hide it. I won’t do anything my oncologist believes is dangerous, and I don’t plan to invite them to attend a sound healing meditation with me (although just typing that out totally makes me want to, if only to see the look on their face), but I don’t appreciate a doctor who defaults to “don’t do any of that because I don’t understand it, and can you please stop being a pain in my ass.” 

Bottom line: Here in the Bay Area, I’m pretty spoiled for choice, with two academic research institutions nearby and several other medical groups to choose from as well. I have been lucky so far, so fingers crossed oncologist #6 will be another good one. Many people don’t have a bevvy of oncologists to choose from. However, if you’re aren’t in an area where you have much choice, I would still advise having a conversation with your oncologist about how you’d like to work with them, and incorporate other experts as needed. Establishing your care team and protocol is no time to be bashful.

The post Update #24: She Gets Around (aka Picking an Oncologist) appeared first on Every Breath I Take.

Tartine Morning Bun, photo by Haynes

A couple of weeks ago, I had my regularly scheduled CT scans. (Update #23/Tldr; the scans were stable/good, knock wood.) I haven’t posted about it yet for two reasons. First, my editor rejected my original draft because I joked about exceptional-responder patients like me having cockroach DNA, which is apparently not a nice thing to say ? Second, my quarterly scans have become noticeably less of a capital “E” Event for me — not exactly just another item to check off on the to-do list, but also not the I-can’t-focus-on-anything-else-until-I-get-thru-this type of thing either.  

I have a great deal of ambivalence about this. OTOH: Yay! I mean, who wouldn’t be thrilled to get to a place where they aren’t crippled by scanxiety every few months? OTOH: Omg, am I getting too cavalier about all of this? Taking my uncommon good luck for granted? Setting myself up for another painful smackdown of shocking news like I experienced with my original diagnosis? (Yes, I was getting anxious about not being anxious enough. Shut up.)

I couldn’t make sense of how I’d gotten to this place of relative comfort with regular scans that have the very real potential to reveal deadly news. So, I spoke to my psycho-oncology therapist about it. She reassured me that this is normal. It’s a function of “exposure therapy.” I’ve been at this for over 7 years now, gone for scans at least 30 times. My scanxiety ebbs and flows, often without rhyme or reason, but generally it has gradually gotten less intense. I’m used to it, and it undoubtedly helps that I’ve gotten reassuring news more often than not. I’ve also developed a habit of treating myself to Tartine after a scan appointment — like the adult version of how I doled out M&Ms to my kids to overcome aversion to potty training – carb therapy FTW. But it’s more than that. My “fight or flight” response simply isn’t triggered in the same way any more. It’s as if my body knows better now, knows it must conserve its energy resources, so I have them to draw upon when I need them. I don’t need the cortisol rush in the days before or during the scan; I need that to kick in if the news is bad and I have to spring into action.

This isn’t to say I’m completely immune from scanxiety. I’m still somewhat distracted before a scan. And for sure, my heart still races when the “You have a new test result” message pings on my phone. But I’m getting better at handling this, in a way I never would have believed possible a few years ago. Turns out exposure therapy + a Tartine morning bun can work miracles. An olive fougasse for the road helps, too. 

The post Update #23: The Miracle of Exposure Therapy + Morning Buns appeared first on Every Breath I Take.