Li'l Chemo, Li'l Fundraising, and a Bit of Pondering

Shelby Park

Here's the short version of my update, with longer ponderings added in below in case ya wanna go there. After having had radiation to treat cancer in the brain and in a lymph node, your friend Gamma Girl is now having infusion chemo plus oral chemo to follow up. It's going as well as chemo can go, which means I am spending a lot of time in a horizontal position streaming Hulu. My family and pups are taking good care of me, and I know I am incredibly fortunate to have them. Also, from my horizontal position, I am fundraising and helping to organize a Lungevity Foundation Breathe Deep 5K which is happening on October 19 at beautiful Shelby Park. The Lungevity Foundation is awesome and gives tons of money to research and patient advocacy, and it's hard to raise money from the post-chemo-infusion couch, so I'd love some help. If you have it in you to indulge yet another funding raising plea (I know FB is full of them!), click Breathe Deep and join my team, The Litwits. The team was founded by my beautiful colleagues at Volunteer State Community College. We're a crew of excellent English teachers, rad writers, and lovely weirdos!  If you live in or near Nashville or are a jet-setter who likes our country music-themed airport, you should totally come. Wear your running tutu, bring the family, dress up your dogs; it's a fun run! If you can't come but still want to be a part of it, maybe you could donate a little something to the cause of lung cancer research.

For more on the challenges of fundraising and infusion chemo, see the ponderings below, if you have a little time. Also below are some pics from last year's race. It was really cold that day because it was in late November, but we had a blast and raised some real dough. I promise the weather will be better this year with our October 19 date. Y'all come on out!

Long-ass Ponderings On Why I Continue to Fundraise

Know what I hate and am also not good at? Asking people for money. Just in general. For anything – for myself, for causes, for other people. Not good at it.

The truth is nobody likes to ask or to be asked for money, in most cases. Americans are actually pretty good about holding fundraisers and sending some spare change around to a few favorite causes when invited – Girl Scouts, cheerleaders, Little League, school band, churches, etc. Some of us donate to political campaigns. Me, I'm a sucker for scouts, the YMCA, and public radio. I also recognize that my donation patterns don't happen out of my innate desire just to do good. I have been and am a direct beneficiary over and over of those organizations I so gladly support, as is the case with many of us who have the privilege of being able to do any charitable giving or volunteering. We give because we are touched by something that organization does.

When I was diagnosed with stage IV metastatic lung cancer, I suddenly had a new cause that mattered directly to me – lung cancer research, of which I continue to be a direct beneficiary. I wanted to raise money, lots and lots of money for this suddenly very important (to me) cause. And not just because I believed it would lead to a cure or better treatments for me specifically, although let's not kid ourselves – it is, of course, one of my fondest wishes to die a very old, eccentric woman, and of something else besides lung cancer. But my fundraising impulse wasn't driven just by hope for my own kookie, aged survival, nor was it driven by some sense of lofty altruism. I started fundraising because I got pissed off, pure and simple. Early in my research about the disease, I learned that lung cancer is the NUMBER ONE CANCER KILLER IN OUR COUNTRY AND YET IS ALWAYS AT THE BOTTOM OF THE LIST FOR GOVERNMENT FUNDING OF RESEARCH.

And that hardly seemed fair. I should mention here that in addition to scouts, the YMCA, and public radio, I also love an underdog. Lung cancer is the underdog of government-supported cancer research funding, which is actually the main reason I was called to the funding fight. Why, you ask, is lung cancer the funding underdog if it's the NUMBER ONE CANCER KILLER? That doesn't seem logical, you say.  I know. I KNOW! But emotions are never logical and people have a curious emotional response to lung cancer – victim blaming. They immediately believe you gave it to yourself by smoking, so it's your pickle and you need to get yourself out of it.  I can't tell you how many times people have asked me about my smoking habits upon first hearing my diagnosis. It's a little disheartening to see the skepticism on their faces as I politely explain for the millionth time that ANYONE CAN GET LUNG CANCER, because as judgmental non-smokers, they want to continue to believe they are not vulnerable. I totally get that. You do everything you can to live a good, clean, cancer-free life, and it really sucks to be told you can still get cancer no matter how much kale you eat. But lung cancer can, indeed, happen to anyone, even non-smoking vegans. Fact.

Of course there is a high correlation between many cancers, many other illnesses and smoking (thanks tobacco industry for your brilliant and lethal marketing), but lung cancer has become the most stigmatized by its association with these tobacco merchants of death, even though non-smokers get the disease too. Regarded as a "smokers'" cancer (which, by the way also associates it with poverty, another stigma), it is seen as somehow unworthy of our government's research dollars. In fact, just this past month a spending bill that would have supported and prioritized a separate fund for lung cancer research came out of committee without those funds prioritized; lung cancer is going to have to compete for research funding with lots of important though less lethal cancers. And it's going to lose. It always loses. And that's where foundations come in.

So yes, I want to see a cure for lung cancer in my lifetime because, duh, I have metastatic stage IV lung cancer. I also know that might not happen, no matter how much I hope or fundraise for research. But I'm fundraising anyway, in part because I have already benefited from existing and current research, so my fundraising is a way of paying that back. Also, I have come to see myself as part of a wider lung cancer community of fellow patients, their families, researchers, and medical providers, and the people who love them all, a community that will extend into the future until we find a cure. My fundraising is also a way of paying it forward into that uncertain future, of trying to assure that research will continue to benefit anyone who might need it, because ANYONE, Ma, Pa, sweet, non-smoking Aunt Marylou, can get this stupid disease. So here I am waving at ya from the couch, a crappy fundraiser, in need of a li'l help from her friends.

Infusion Chemo 

And now, I'll climb down off the soapbox to give a quick chemo update.

After considering my limited options for addressing recent disease progression, my lovely and fierce onc Dr. Johnson and I settled on a multi-approach care plan that includes radiation, followed by continued use of lorlatinib at a lower dose, plus four rounds of infusion chemo, which we hope will act as a kind of dragnet to catch whatever cancer slipped lorlatinib's leash. The thinking is that if those mutated cancer cells get killed by the cytotoxic chemo, I'll be able to go back on full-strength lorlatinib and that it will hold me for awhile longer. The chemo I'm on, pemetrexed and carboplatin, is "well-tolerated," and is infused along with a ton of anti-nausea medication, so I'm not puking my guts out. The fatigue has been pretty awful, though, and I've had some dizziness, which could be a holdover from radiation too. Anyway, just today I finally feel like I'm really pulling up from the muck of it, which gives me a couple of weeks of "good" time to be productive (looking at you East Nashvillian magazine!) before I hit the couch again. I am scheduled for another infusion the week of the Breathe Deep 5K, but I'm still planning to volunteer at the event, even if I can't run. Hope to see you there.

The Case of the Disappearing Spots*

When I went to the clinic yesterday for what I thought was going to be the first of four CyberKnife procedures, it turned out they had me scheduled for only one procedure. What? But when I'd gone for the consult a few weeks ago, the rad onc told me it looked like I had four cancer spots on my brain and that I'd probably need four sessions, one to treat each spot. Nope! Much better news! It turns out that on closer inspection with the super-duper stereotactic brain radiation planning MRI in August, my lovely rad onc was able to see only two li'l spots in my noggin instead of the original four we thought were there back in July, so she was able to zap both li'l spots (which, she is certain, were indeed cancerous lesions) in the same session. But what happened to the other two spots? The good doc suspected that they had perhaps resolved on their own and might just have been enlarged blood vessels. Whatever the reason, I'm glad and deeply grateful they are both gone, and I'm glad the two remaining spots got zapped and are curling up to die as I write. 

Today I am tired and dizzy, and my face is a big fat full moon from the steroids I have to take to keep my hot mess of a brain from swelling, but I am finished, after one treatment, with brain radiation. Now for some rest.

Here's the upshot regarding prognosis -- I am likely never going to be "cancer-free" unless research really speeds up a lot and the brilliant minds find the miracle cure. I've known that since the beginning. I had been very hopeful that I would get more time on the two inhibitors we've tried, as other patients have gotten years on both crizotinib and lorlatinib. That still could happen with lorlatinib with help from radiation and chemo, but my cancer sure does like to mutate quickly, so we'll see.

I really do hold stock in what my first onc, Dr. Peacock, had to say when I was first diagnosed: "We're hoping to treat metastatic cancer as a chronic condition, and we're hoping the research outpaces the disease." Where the research is leading now is in the direction of personalized, genetically tailored treatments (vaccines), immunotherapies, targeted therapies, and combination treatments like the one I am trying (targeted therapy (loraltinib) + radiation + chemo). My new onc, Dr. Johnson, works on the cutting edge, right where I am disease-wise. So I remain hopeful that if we nip and tuck these pesky pop-ups, and I maintain a healthy lifestyle, I'll be able to live a long time with this rude little cancer gangster doing life in inhibitor prison. Maybe one day it will disappear like those two spots.

*This content is adapted from a CaringBridge post which goes into more detail about upcoming treatment, so if you want to see that you can visit Leslie's CaringBridge journal.