Having a Moment Here (and Now)

The god of dirt
came up to me many times and said
so many wise and delectable things, I lay
on the grass listening
to his dog voice,
crow voice
frog voice; now,
he said, and now,
and never once mentioned forever
                      --Mary Oliver

I turned thirty years old standing on a bridge in Yoyogi Park in Tokyo. It was a Sunday, and on the concourse below, bands were playing, lots of them. Rock-a-Billy. Punk. Metal. Thrash. 60's Covers. You name it. There were at least 30 bands jamming away. All at once. Each with varying degree of expertise and talent, all with much enthusiasm. And people were dancing, or at least moving their bodies in interesting ways, with fans of particular bands dressed in the same style as their pals on stage (punk-a-billy was by far the most popular ). This exuberant display of organized rebellion happened every Sunday, the guidebooks said. Young Tokyo-ites would pile all their gear -- guitars, drums, generators – onto the subway, emerge at Harajuku Station, and set up one band right next to or across from another, creating a corridor of sound at this particular spot in Yoyogi Koen. It. Was. Amazing. And really, really loud, so loud the cherry blossoms shook. Well, maybe that was wind, but still, loud.

I was pleasantly surprised to be suddenly thirty and living in such a country, where I happened to be teaching English to rich housewives and corporate executives. It's not that thirty was a big deal; it wasn't. I hadn't accomplished anything in my life at that point, really, and was sort of hiding out in Japan from embarrassment. I didn't own a house, had no kids, no spouse (are those accomplishments? hmmm), no prospects, and no clue what I was doing. I'd squandered my twenties on pub crawls and college with not much to show for it. But I remember that moment on the bridge as one in which I was particularly glad to be alive, and walking through that crazy, joyful corridor-o-sound that day had made me even more glad.

With thirty a long way behind me now, I still feel that way about my life,
glad and grateful to be in it, moment to moment. And I feel that way especially when I go out to hear live music with my family, something I get to do a lot of in Nashville. For instance, this past week, my sweet step-daughter took us to see one of our favorite San Francisco artists, Chuck Prophet, with his band The Mission Express. They played at a small club not far from my house, and I spent the entire show being really, really happy. Also, Chuck was wearing a Waylon Jennings t-shirt, so bonus happy there.

And, I got to feel that way again yesterday when I got the report on my new set of scans. It was a really good report. It said that there is no visible cancer in my lungs, that all the tumors that were there are gone. It said that the constellation of tumors in my brain has gone mostly dark, except for one little 2 millimeter spot.  It said that spot was there on the last scan too, but it hasn't gotten any bigger. So basically, I have 2 millimeters of visible cancer in my body. And I think there's a good chance that 2 millimeters will disappear with continued treatment on lorlatinib. We'll find out with the next set of scans, but I am wildly optimistic. And it's funny to be happy about the fact that I have 2 millimeters of cancer, isn't it? I mean who else would be happy about having any cancer at all? Still, 2 millimeters feels like a win to me. But that win isn't mine. It goes to the researchers who created this medicine. It goes to all who have prayed for me and wished me well, and to the one to whom you have offered those prayers. I take every breath with gratitude.

So, is my cancer nearly cured? Not exactly. I still have stage IV metastatic disease. And that disease can rear its ugly head any time it decides to become resistant to treatment. But lorlatinib is a really potent treatment, and right now, it's working. So I'm having a moment here. And it's a pretty fucking great one!

What Not to Ask Someone With Lung Cancer

I know. You can't help it. You learn someone has lung cancer, and your first question is some variation of this: Did/does that person smoke? It seems an innocent enough question. I mean, after all, it says right there on the cigarette pack that smoking causes cancer. Duh! And we learn through anti-smoking campaigns early on that to prevent lung cancer, we ought not smoke.

But unpack that question a little more; when we ask  about whether or not the person with lung cancer smoked, aren't we are also asking for some assurance that if we don't smoke, we won't get lung cancer? In that framework, from the perspective of a self-righteous non-smoker, the implication here is that if a person who has lung cancer did smoke, the disease is that person's own damn fault. The given equation of smoking = lung cancer is ingrained in our culture. So, the question about a person's smoking habits invokes a stigma surrounding lung cancer that not only has social consequences; it affects even the way research funding is directed. See: Is There a Stigma in Lung Cancer Funding Research?

Here's something else to consider. If someone told you they had diabetes, would you ask them if they ate sugar? If someone told you they had heart disease, would you ask them if they ate red meat? If someone told you they had liver cancer, would you ask them about their drinking habits? Probably not. Certainly smoking is one of the chief behaviors correlated with a high risk of cancer, but it is not the only cause. Radon, second-hand smoke, toxic agents, gene mutations all can cause lung cancer. Some lung cancers are just idiopathic, perhaps caused by a perfect storm of any of the above. Some people smoke their entire, lucky lives and never get lung cancer. And I hate to undermine the self-assured non-smoker, but if you have lungs, you can get lung cancer.

So, if you learn someone has a lung cancer diagnosis, don't ask if they smoke. A better question might be: How are you doing?

Dating Myself

For one year in the 1990s, I taught English to high school and middle school students at a private academy, the sort of place where entering the "college of one's choice" (aka Harvard) was the expectation of each would-be graduate. One of the things fifth graders learned at this school, besides, ya know, rocket science and Advanced Mandarin, was to keep a calendar. From early on in the school year, those little polo-and-khaki-wearing wonders were encouraged to fill in their school-issued Franklin Planners with assignment due dates and extra-curriculars and whatever else people used to put in Franklin Planners. It seemed pretty apparent that this was early training for world domination, and knowing what some of these kids are up to now, it seems to have worked.

I didn't keep a calendar until graduate school, and then it was just to help me remember when I was supposed to go see my therapist.  Honestly, for a long time, I was pretty good at keeping a lot of that sort of stuff in my head. Lunch dates. Car and doctor appointments. What was on the syllabus for next week. I kept a sketchy date-book through my 20s & 30s, but relied just as much on a scattering of post-it notes and appointment cards slid under refrigerator magnets to keep me on track. Then, somewhere along the line, the requirements for me to be certain places or to do certain things at certain times outstripped my brain's and the refrigerator magnets' ability to keep them and me all wrangled. I think it's no coincidence that this happened around the same time I got a smart phone, which clearly, has made me dumber. Anyway, now I put EVERYTHING in my phone, information which somehow, through the cloud, also magically gets transferred to my laptop.  And for some of these things, I also create "alerts" so the phone can warn me days, hours, and minutes in advance of upcoming commitments.

But for some dates, I don't need reminders. Like Friday, July 6. Blood draw. And Monday, July 9, scans. And Tuesday, July 10, scan results and strategy session with Dr. Peacock. So sure, today is July 4, or actually, the small hours of July 5, and I've got scanxiety. And that scanxiety has been made worse by the fact that the folks in Boston have asked me to withhold a couple of doses of the medicine due to the neuropathy that has developed in my hands. And I know I shouldn't be too anxious about this, because neuropathy is a known AE of this drug, and, it is, after all, a DOSING trial, which means there will likely be adjustments in DOSAGE, duh! On the phone, the nurse practitioner assured me (without laughing!) that the cancer will not come roaring back twice as strong in two days because I skipped a couple of doses.

But still, the mind churns. This will be the first set of scans I've had since starting the lorlatinib, the first since the last scans which discovered brain mets and progression in the lungs. I remind myself, on the whole, I've been feeling good, that I haven't had any symptoms suggesting a rapid cancer progression anywhere. Why, just last week in New Orleans, my husband and I trekked through over 15 miles of urban hiking in just a couple of days. And last night, we went dancing.

Of course, it's true that my brain is definitely working more slowly; sometimes when I try to multitask, I just can't. For instance, I can't carry on a conversation while looking up the weather or directions on my phone. Also, my speech needs to be slower and more careful when I get excited, or I trip up on words; it's like my word retrieval mechanism can't synch with my thoughts.  I liken the feeling of my brain slowing in those moments to the sound effect in sci-fi movies when the spaceship is suddenly caught in a tractor beam and slows down --whoompwhoomp... whooomp......
whoomp.  But, is that slow thinking caused by a tumor, or by the medicine? Dopiness is a known AE of the drug, so I choose to believe my whoompy thinking is caused by the lorlatinib, and that the tumors are being held in check or even resolved. Still, only the scan will tell us for sure.

In the meantime, I can still enjoy the cicada songs and the stillness of the July night, finally quiet now after hours of fireworks. And tomorrow (or actually later today), I've got a car appointment, a massage, and a date for tea, or at least that's what my calendar says.

And Just Like That

It's summer! And I'm in Boston! And, I'm alive to proclaim those facts. It's the little things, folks.

The news from Mass General is generally good. After interpreting lab results for the million vials of blood I have donated to the cause of research, the doctors there have decided that everything looks in order for me to continue in the lorlatinib study. That means I still have cancer, but it's not killing me yet, and the medicine might even be working to keep things in check. So yay! We'll know more about how well the lorlatinib is actually working next month after I've had a new set of scans, so stay tuned. In the meantime, I've been sent on my way with my second batch of cancer-fighting pills and a new prescription for a statin to address the recently elevated cholesterol levels, a known adverse effect (AE for those of you who are compiling the cancer abbreviation and acronym glossary along with me) of lorlatinib.

I've also been advised to abstain from alcohol completely (good lord! no bourbon? really?) due to elevated liver enzyme counts, another AE. Apparently, lorlatinib can irritate the liver, and no one wants a cranky liver. The drug can also can cause neuropathy in the hands and/or feet. And guess what? Yep, I've got it in the hands -- that wicked tingling, that inability to make the fingers do what the brain compels. So that's really fun when one is a writer, which, as you know, involves typing and/or holding a pen, both hand-intensive activities. Neuropathy AND no whiskey? Y'all are lucky I am writing anything at all, let alone something that is supposedly informative.

Anyway, I am doing what I need to do to address some of those AEs: yoga, ayurveda, massage, and, more recently, acupuncture, and they all help. Plus, the husband and I are planning a trip to New Orleans. That'll cure just about anything.

Things That Grow Bumps in the Night

Or, Doing Science in the Shower

You're in the shower lathering up with your favorite lavender soap when your fingertips notice some little bumps in your flesh, high on the right side of the torso, bumps that weren't there yesterday. You stand there for a moment, letting your fingers glide over these bumps, feeling the hardness of their centers. You wonder, for a moment, what the bumps might be, exactly, and it takes you a little while to process this wonder because it is morning, after all, and you have not yet had any delicious coffee. So you feel around the bumps again, and you wonder some more, and then, with an awful realization, your cancer-patient heart sinks. They're nodules, you think, and feel them up some more. Yup. Definitely nodules. The magic new clinical trial cancer medicine isn't working after all, you think, and the lymphatic adenopathy, which until very recently had been shrinking, has spread its ugly metastatic blooms to this very spot. This, despite the fact that JUST YESTERDAY you had blood work drawn at the oncologist's, and everything looked great. This despite the fact that yesterday there were no nodules. And now you are going to have to call the oncologist and probably will have to have surgery or radiation or extra chemo or all three of them at once. Dammit! Just when it seemed things might be going well.

Then, instead of just feeling the evil, metastatic nodules, it occurs to you to actually get out of the shower, wipe the steam off the mirror and have a good look. And...yup...your skin bears the tell-tale markings of what quite clearly are three really big, pink, welting insect (probably spider) bites. And while it's true that those pink swollen spots are probably, technically, nodules, you realize they are only making their appearance as part of a healthy immune response to the spider toxin, and that they are not, in all likelihood, metastatic. And this is the first time in your life that you have ever been grateful for spider bites.

Getting Our Facts Straight

When I began sharing my lung cancer diagnosis, most people responded with great compassion and love. Offers of rides to the doctor, housekeeping, meals, visits, cards, healing gifts, prayers, all those beautiful kind things people do to ease the bad news were, and continue to be so welcome and appreciated.

But many of us who have lung cancer also get questioned pretty quickly about whether or not we smoke or have been smokers. There are a number of reasons for that, of course, but the main one is that we have been trained by established discourse to believe that smoking equals lung cancer and that we can "prevent lung cancer" by not smoking. Neither of those things is true. While smoking is one of the many risk factors that can contribute to the development of lung cancer, today almost 80% of lung cancer patients are non-smokers (former or never-smokers). In other words, the majority of people with lung cancer do not smoke now or have never smoked.  About 20% of those people are never-smokers. We need to get our facts straight, folks. As with so many other cancers, ANYONE CAN GET LUNG CANCER.

For more about what this means in terms of the sort of (mis)information we're still getting about lung cancer EVEN AT SCIENTIFIC CONFERENCES ON THE SUBJECT, please visit the wonderful blog post by the brilliant Lisa Goldman at Every Breath I Take in which she professionally and thoughtfully addresses the scientific community on the error of their ways! I love Lisa's writing; she's one of our community's strongest advocates, and I'm grateful for her voice.

Yay for Coffee -- A One-Week Update

So, after a full week taking lorlatinib, I think I can say I'm tolerating the medication well. I can't tell how well it's working though, because I wasn't having any tumor symptoms before I started the protocol, so the only way we knew the cancer had progressed was because of what showed up on the scans. However, I can say that the side effects of the lorlatinib are much milder than those I had previously with crizotinib. For instance, food actually tastes good again, and I am not contending with daily morning nausea. And, hooray, that means I get to drink coffee again, a beverage I love and had to give up on crizotinib because it made me feel terribly ill. Yay for coffee!

I was warned that the medication could make me feel a bit spacey or giddy as it began to penetrate my brain, and I am, indeed noticing those things. I feel just a little bit

stoned all the time, but I don't consider that a problem 😉. I am taking it as a sign that the medicine is actually working on my brain and zapping those little fuckles! It does make it a bit hard to multitask sometimes, and I do lose my train of thought in conversation now and then, but, um, I think I struggled with those things before lorlatinib! Anyway, I'm in a really good mood most of the time!

Here are a few helpful ways to think about what is happening in my brain and body:

• Lorlatinib as Pacman munching up the tumors as it runs around the mazes of my brain and lungs and lymphatic and circulatory systems
• Lorlatinib as a Harry Potter expelliarmus spell, disarming the cancer of its deadly mutations
• Lorlatinib as scrubbing bubbles
• Lorlatinib as Divine gardener plucking out the tumors like so many weeds from my poorly-tended garden

Anyway, now we do watchful waiting. If I don't start to exhibit symptoms (slurred speech, vision problems, lack of coordination, language issues, breathing problems, adenopathy) between now and my next set of scans in July, we can hope the lorlatinib is working and tumors are shrinking or at least not growing. It's also possible that the lorlatinib is not really working, but the tumors are growing so slowly they are not yet causing symptoms. Any of those scenarios will be confirmed by scans: shrinkage, stability, or, ugh, progression. And of course, another possibility might be something good for which science cannot account and which those wiser than I would call a miracle.