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.