Journal entry by Leslie LaChance

It's been a year and a day since Dad's passing last December 3rd, right at the beginning of Advent. I think about him in some way every day, especially that million dollar smile of his. A few days ago a Facebook anniversary algorithm spit up photos I took last year at the hospital as my family kept watch for several days and waited to see if Dad would recover from two cardiac events or pass on to the afterlife, where ever or whatever that might be. As I look at the photos now, pictures taken at odd angles of random hospital things – life-support machinery, light switches, corner mirrors, a creepy player piano in the lobby – I recall those last few days spent with Dad as both harshly edgy and gently dreamlike, a memory like an old documentary movie shot on grainy film stock, player piano Christmas carols and show tunes as soundtrack. Even though it was hard to stand at his bedside as he finally left us, I'm grateful so many of us got to be there, every person in the room – my mom, my sisters, me, dad's youngest brother, my brother-in-law, one of dad's grandsons – each one of us was touching him some place, holding his hand, stroking his arm, his side. I was holding one of his feet. The weeks that followed his passing were hectic, and we flew reeling headlong into the Christmas holiday without any of us being ready for it in any way, emotionally, economically, logistically, spiritually. Which was fine; I mean how else could it have been, given those circumstances?

A year out, we all still miss him, of course. It will be our second Christmas without him. It will be my THIRD Christmas since that "terminal" cancer diagnosis turned everything upside down. Yup. (Some might recall I spent that first Christmas recovering from a cancerous pericardial effusion that nearly killed me.) And last week I got to celebrate my THIRD Thanksgiving since that original cancer diagnosis.  Though I still whine and complain mightily about SO MANY THNGS and long for much I don't need, though I miss my dad, though I've had disease progression this year, though my heart aches for recent losses in our lung cancer community, though I am losing friends to cancer and other ailments as I write this, I stand here grateful to be in it, this unruly, emotional, painful, joyful, messy life, even in the midst of the suffering and the loss. 

It's Advent for folks who celebrate Christmas. And even for many who don't observe the Christian holiday, in the Northern Hemisphere especially it's still a season of watchful waiting. We grow contemplative, look inward, maybe spend a little bit of extra time in prayerful meditation or staring into the snowfall or firelight. We walk out in the growing solstice dark keeping faith with the universe, with God, that we'll emerge into a growing light. We think of the end growing into the beginning. This year, at least from where I stand today, I get to sit with all those Adventy-solsticey kinds of thoughts, get to give those ideas some time, time I didn't seem to have last year as everything cascaded down around losing a family member.

Part of the watchful waiting for me also involves my upcoming scans. Two days before Thanksgiving, I finished what I hope will be my last round of infusion chemo, at least for the foreseeable future. I am thankful I tolerated the treatments well, with only severe fatigue and mild anemia as the most concerning side-effects, which I am told will disappear once my red blood cell count rebounds. When I have my scans later this month we'll be watching and hoping for a few things: first that the chemo and earlier radiation treatments have addressed and eliminated ALL the disease progression discovered in body and brain last spring, summer, and again this fall; secondly that there is no NEW progression; and finally, in the coming months (and maybe years?) that we can "re-challenge" the disease with lorlatinib (Lorbrena) and that this medicine can hold the disease in check for a good while longer.

I remain hopeful about treatment and lots of other stuff (even the fate of the planet and the human race hellbent on ruining it) in part because being hopeful is just my habit of mind. Also the other option is not tenable. One waits. One is hopeful. In Spanish, "to hope" and "to wait" are expressed using the same verb, esperar – two ideas spiraled around the same little cluster of phonemes, resting in the now, pointing toward the future. 
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Journal entry by Leslie LaChance

So yesterday, November 9, marked two years since I received my cancer diagnosis. It's been a bit of a whirlwind these past few months, with three courses of radiation since July, and chemo every 21 days since late September. But for the most part, over the past two years I have been blessed with twelve months of disease stability and a good quality of life. And while chemo and radiation are no picnic, my last scans are showing tumor resolution in the lymph nodes and no active disease from the neck down, so the yuk and yak of the ickiest treatments may have been worth the ick after all. We'll do an MRI of the brain in a few more weeks with hopes that everything in my noggin is stable too, which will mean that after my next scheduled chemo infusion at the end of November, instead of doing a maintenance chemo of Alimta plus lorlatinib, we're going to try to make a go of it with just the lorlatinib at a full-on dose. Other patients I know have had successful "re-challenges" after chemo and radiation, and they have experienced stability for many months, so here's hoping I can untether from the chemo line and go back to living a somewhat normal life taking just the oral chemo. Stay out of my brain and all the rest of me, stupid cancer!

I haven't really had the energy to organize a Lung Cancer Awareness Month fundraiser for this November (yup, we have a month, and our ribbon color is white), but there's still time; so if you have an idea for a fundraiser I can do from the sofa (lol), let me know. If you haven't done so already and you want to donate to support a great research project that will absolutely benefit people like me who have ROS1-driven cancer, please check out this ongoing fundraiser at the GO2 Foundation for Lung Cancer. We ROS1ders are trying to fully fund the project at $500,000, and we've raised just over $365,000. I have the audacious goal of raising $10,000 myself by the end of November, but I'm not so sure how I'm going to do that from the sofa. Still, I would love your help, and/or for you to pass the word. And don't worry if you can't give this time. You know I'm going to ask again. If you'd like to see my Sojourn & Stardust post about fundraising, go here and scroll down a bit past the update stuff.  Oh, and for something entertaining, if you'd like to see my most recent Sojourn & Stardust post on the giggle fit I had in the chemo suite, go here. 

Also, here's one more ask of a different sort. I follow quite a few cancer patient blogs, some here on Caring Bridge and others elsewhere. I think that's part of what happens when someone is diagnosed; we seek community as best we can, including online, with others who share our plight. And right now, it just so happens that nearly everyone with cancer I follow via their blogs, and some friends with cancer who don't write blogs, have experienced significant disease progression very recently. Two I love dearly are transitioning to hospice. So I ask all readers of this blog, whether you're a praying person, a vibing person, a well-wishing person, to please send your goodness and compassion out into the universe on my friends' behalves. All of us could use a little tenderness.

Journal entry by Leslie LaChance

To be honest, my first year and a half of cancer treatment was challenging, but not horribly difficult. I mean besides having to have emergency heart surgery about a month after diagnosis, all I did for the first year and a half was take chemo pills every day and travel to Boston a bunch. Oh, and there were the monthly blood draws, and the scans. And the side-effects of the chemo pills, which were significant but very manageable. Except for the forty-pound weight gain, which I still haven't shed. Still, I think the most debilitating thing in those months was actually just the anxiety. I worried all the time about when I would see progression. I mean, I knew I would eventually; I just kept hoping I'd be one of those outliers who would get lots of time on one treatment before having to change to another because the cancer had mutated and become resistant. 

Now that I've experienced some kind of disease progression on pretty much every set of scans I've had since late last spring, I'm not anxious at all. I'm resigned. Not to the disease progression, but to beating it back, and in the best of all scenarios, stopping it completely. That has meant adding more conventional treatments with worse side-effects to the targeted therapy. That's fine; I'm tolerating them all well so far, but I have to show up for them every few weeks and deal with the side-effects for some time after. That has made it more difficult to move about the country (so many folks I want to go visit!) and to take care of basic things around the house. I'd love more visitors, but I can't seem to ever get it together to get the house clean enough, so no one is invited over. Of course, I've been busy with some writing projects, which I'd rather do than clean house, so the lack of socializing is partly created by my wanting to work and not having much gas left in me to do much else (wah wah wah). Wish I had energy for all of it!

I had three more brain mets treated with the cyberknife today. Radiation has left me tired and dizzy, and the steroids I have to take to keep my brain from swelling up against my skull upset my stomach, even though I take them with food as instructed. I also don't feel comfortable driving in crazy Nashville traffic; it feels like my response time is a bit slow, so John carts me around to all my appointments pretty much. I'm lucky in that regard and often think of folks who are compelled to do all the cancer fighting all on their own, and how much harder that would be! Tomorrow is a CT scan of chest, abdomen, and pelvis to check how well chemo is working on that other naughty lymph node. Then I'll have another brain MRI in a few more weeks to check on the mets treated today. Here's hoping that these more aggressive treatments will stabilize the disease and I'll be able to continue on lorlatinib with a lighter maintenance chemo of just Alimta. I've got two more doublet chemo treatments (Alimta plus Carboplatin) coming up in November, then the scans after that (brain and body) before we'll know for sure. I lost lots of my hair to the last dose of Carboplatin. Not fun. Histologically speaking, this cancer REALLY loves my brain. I guess that's where the party is. If it decides to take up residence there again, I'll probably move into another clinical trial, but that will depend on lots of other things falling into place. Still, I am certain that my lovely rad onc has zapped all the brain mets to oblivion, and I'm confident they won't be coming back.

For now, I'm just trying hard not to be grumpy about so much of my life being dedicated to treatment these days, and to remember how lucky I am to have this medical care close at hand. Also, I'm grateful to John, Rachel, and David for looking after me when I've been feeling crappy. They always manage to keep my spirits up. Knowing that this upcoming radiation and next week's chemo were going to put me out of commission for a bit, John and I took advantage of one of my "good days" earlier this week, and we hiked about 7 miles in one of the lovely and very hilly nearby city parks. Rachel joined us for part of that walk, and we had a nice afternoon together. Also, this past weekend, Rachel and I worked some on our art project, making my first radiation mask into something beautiful. I brought my second mask home today. I hope it's the last one I'll ever need. We're going to make this new one into an art piece as well. If they turn out as well as I am anticipating, I'd love to try to place them with one of our local galleries. We'll see. I'll post pictures when we're done with them.

Journal entry by Leslie LaChance

Well dear ones, the news from my most recent MRI is mixed. The good news is that the li'l spots on my brain I had treated this summer are all gone! So YAY! BUT, three more little spots have made an evil appearance in a different part of the brain. They are tiny, and most importantly they ARE treatable with the Cyberknife as well, so we are moving forward very quickly to stop this progression. I remain optimistic, and will likely have a radiation treatment next week or the week after. My fabulous radonc, Dr. Chollet, says she can get the three spots all in one go, so that's great! I have a planning session with her tomorrow. My regular onc, Dr. Johnson has me continuing with chemo every 21-days, and we're coordinating that treatment with my upcoming radiation to be most effective. I just had my second chemo infusion this week and am tolerating it well while continuing on a reduced dose of my oral chemo. The chemo drugs will have better penetration to the brain with the help of radiation, so with all that working, we're hoping to stabilize the disease in the next few weeks. I'm not looking forward to the compound side-effects of multiple chemo drugs and brain radiation, and I expect to be VERY STUPID and VERY TIRED in the time it will take my brain to heal. I'm not sure yet what will happen to my word-finding, language processing, but given the location of the spots on my parietal lobe, it's likely there will be some impact that will hopefully only be temporary.

Also we'll do a CT scan on Halloween to check on the other naughty lymph node in my body; I'll have another chemo infusion after that, and then an MRI again at the end of November to check in on the brain. If these treatments don't halt progression, we'll look at another clinical trial, possibly in NYC, Boston, or if we're lucky, Nashville. Fingers crossed, good vibes and prayers welcome and much needed!

In other news, this Saturday, October 19, I'll be participating in the Nashville Breathe Deep Stache & Lash 5K walk/run to raise awareness and funds for The Lungevity Foundation. It's my second year on the organizing committee, and I am really excited for this year's event. The weather is supposed to be lovely, and we have over 200 people on board to come! I am hoping to be well enough to walk the short course. If you'd like to support us, you can join the team that was founded by my lovely colleagues at Volunteer State Community College by clicking The Litwits. It costs a little to register for the walk/run, because we have some event-related expenses to cover. They'll also ask you for a donation of $100, but don't feel you need to give over the registration fee, or just donate whatever you feel comfortable doing using the donation button. I know there are SO MANY worthy organizations out there, and we all have to prioritize our giving, so if you can't help out this time, no worries! I'll ask you again another time.

I love the mission of Lungevity. They give lots of money to support lung cancer research and patient advocacy. In fact, I am planning to apply for a scholarship to attend a big patient summit Lungevity holds each year in Washington, D.C. at the end of April. Next month, November, is Lung Cancer Awareness month, and I'll be turning my fundraising focus to the GO2 Foundation, which has a project focusing on ROS1 cancer, my brand of the disease.

I appreciate all you all do to support me, my family, and all those affected by lung cancer. Your love makes my world a better place!

Journal entry by Leslie LaChance

This summer and now (officially) autumn, I have been trying to find as much joy as possible in the cancer treatment/recovery cycles. The past few weeks have involved some real celebrations in between and around icky cancer treatments and recovery times. I guess you could say we've had a bit of fun in the in-between in betweens. (Better than being in The Upside Down, for you fellow fans of the show Stranger Things.) Anyway, when I last reported, Gamma Girl had had her next go at radiation this summer, this time to zap a couple of brain mets, which, thankfully, the rad onc got all in one go! I am still recovering from that, with occasional bouts of fatigue, transient dizziness, and disgustingly drenching hot flashes, which ALWAYS happen out of the blue and often at embarrassing moments, like when I am interviewing someone important for my magazine work. Of course it doesn't help that temperatures in Nashville have been bouncing into the high 90s for weeks and we've got another week of high temps predicted as we tumble toward October. I can also tell I've had some work done inside my cranium because word recall has become difficult again (much like when I first started lorlatinib), so I sound like an idiot in conversation, constantly stopping mid-sentence and squinching my eyes off into the distant and ever-receding word hoard for just the right (it was on the tip of my tongue!) word to say what I mean. In other news, I've also proceeded to the next phase of treatment, infusion chemo, but more on that in a bit. First the joy.

As I was recovering from brain radiation, we had a great music festival happening here in Nashville, Americanafest, so we tried to get out to some of the showcases. My energy was really low, and John was also recovering from a bad respiratory infection, so we couldn't go to as much as we wanted to, but we still managed to have a great time seeing some of our favorite musicians perform and getting turned on to some new ones. For us, one highlight was the day stage run by our favorite public radio station, WMOT, where we caught a great afternoon showcase that featured Che Appalache, who fuse Appalachian music with Latino styles, and who also did a song in Japanese! It was our first time hearing them, and they were amazing. We also got to hear the phenomenal guitarist Molly Tuttle perform with her band that afternoon and saw an interview and performance with Tanya Tucker, who just released a new album of songs written especially for her by Brandi Carlile. It's probably no surprise that my favorite song from her new album is the title track, While I'm Livin'. I am so grateful for these artists and for how WMOT creates a platform to showcase diverse musical talent, folks who don't get a lot of airplay on mainstream radio.

Because my brain radiation recovery was going well and I was able to string together a fair number of undizzy, unexhausted hours at a time, we decided to go ahead with a little, somewhat impromtu mini-vacay to New Orleans and then spend a couple of days by the sea at Gulf Shores before I started the next phase of treatment with icky infusion chemo. we went on our little road trip, with John doing most of the driving.

Why New Orleans? Because that's where we always go when we need a little lagniappe. It's a funky city with a deep, soulful vibe; its mojo gets up all over you and in you, and just being there is a kind of medicine for our souls. Again, my low energy and the day-time heat (which bothers me way much more than it used to) kept us from our usual pace, but we did manage some nice evening walks around the Quarter near our cheap digs at Le Richelieu over at the quieter end of Chartres near Esplanade. We ate lots of good food, of course, and got to have an especially lovely dinner with poet friends Katy Balma and Rodney Jones at La Crepe Nanou (adorable creperie!), and visit my favorite painting, The Universal Mule, at The Ogden Museum of Art. We checked out the WWII museum, which is good, but really designed for people who don't know much about that part of history, so really great for younger people, some some tourists probably, but not so informative for those of us who have more background and had good history teachers. The story at the museum is definitely told from a winner's perspective, so the focus is on American heroics, which were, of course very impressive! 

Now, Atheist friends may want to avert your eyes for this next thing, but while in New Orleans, we also visited The Shrine of Blessed Francis Xavier Seelos, which we had done last summer as well. It's a beautiful spot in the city, and I feel a strong sense of healing just sitting quietly in the beautiful 19th century church, St. Mary's Assumption, built for the German immigrants of New Orleans. I still want to write a more full account of the role spirituality, and in particular, Catholic spiritual life, has had for me, now and in the past before I got sick (yes, I was a Catholic then too, just a different kind of Catholic), but I'll save that for another time.  

After a couple of days taking it easy in the Big Easy, we drove east to Gulf Shores, where John had arranged a nice apartment for us ON THE BEACH! It was only the third time in my adult life I've had a beach vacay exactly beachside; the first time was in Thailand in the 1990s, and the second during a trip to Costa Rica back in the early aughts. This time, beachside in America was actually affordable because it was the off-season. Now, I've never been a fan of the big American condo-boxes by the sea, favoring instead the funky beach shack on a foreign shore. But there we were on the top floor of a big American condo-box by the sea, and well, I have to admit, it was rather nice, especially when the frigate birds flew by at eye level close enough to touch. And it was lovely to sit on the balcony with a great view of the magical, powerful Gulf of Mexico, to hear the bird cries swirling in with the thundering surf, and to inhale the briny air. We left the slider door open all day and most of the night to fill the apartment with the sea breezes and sounds of the waves and birds. The ocean was too churned up and laced with jelly fish for real swimming (it's fall hurricane season), so the warning flags were out, but we still got in some lovely walks and waded a bit in the rough surf. Sigh. 

We returned to Nashville after a brief and happy respite along the southern coast. Daughter Rachel had stayed at our place to take care of dogs and plants, and she'd tidied and cleaned for us too, so I'm incredibly grateful to her. We also had a wonderful night out on the town with dear friends Ilona and Ken, who came all the way over from Paint Lick, Kentucky to fete us with a fine dinner and honky-tonkin' before I had to go back to Cancerland. What a wonderful way to conclude our little summer adventures!

This Monday I had a CT scan of my chest, abdomen, and pelvis with some mixed results, which we discussed with my onc, Dr. Johnson, yesterday. The spot we were watching on my kidney is improving, so we think it's probably not cancer, just an infarct or a cyst that is healing itself, so that's good news. Lung cancer loves to metastasize to the kidneys and adrenal glands, so thankfully all seems okay in that regard. However, the scans showed more lymph node swelling, though not to a level considered "pathological", meaning maybe not cancer, just something to watch. Other than that, everything looked good and seemed stable. I'll have a brain MRI in October to see how well the Cyberknife worked. We decided to go ahead with some "light" infusion chemo, since I've had two recent bouts with progressive disease, and the hope is the chemo will catch and kill whatever the lorlatinib hasn't supressed. My onc admits she's probably being overly cautious, but she really thinks a combination of the targeted therapy and chemo will do a better job keeping things in check and preventing future progression, for a while anyway; remember the shotgun + laser combo theory? The hope is the chemo assist will help me get more mileage out of the targeted lorlatinib before having to change to a new drug that is still in trials. Also, having had chemo won't disqualify me from going into a new trial eventually, and it looks like one might be coming available right here in Nashville, so that could be a possibility if I face another progression. 

In contrast with the foot dragging that went on when I was trying to get radiation at the beginning of summer, my new onc didn't waste any time starting chemo. I had my first infusion yesterday when Dr. Johnson walked me over to the treatment room right after our consult! I didn't have to have a port installed, because by some miracle, my veins are still pretty good, despite being such a high traffic area for blood draws and scan dyes, and my brand of chemo is not super toxic. So yesterday, I had quite the craft cocktail: pemetrexed and carboplatin (to kill the cancer) infused with zofran (to prevent nausea), dexamethasone (to prevent rash), palonosetron (to prevent nauseau), and folic acid (to prevent folate loss), and it was served with a side car of a Vitamin B12 shot. I was sent home with three prescriptions (zofran, dexamethasone, folic acid) to help manage side effects at home.

Let's put an umbrella in it, shall we, this whole frothy crazy mixed up summer, and call it a cup of sweet-bitter, heavy on the joy.

Journal entry by Leslie LaChance

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 spots 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 and not enlarged blood vessels) in the same session. But what happened to the other two spots? The good doc suspected that that they had perhaps resolved on their own and might just have been enlarged blood vessels. Whatever the reason, I'm glad 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. I will rest some for the next few weeks, and balance that out with some exercise so that I can be strong enough to start a short old-fashioned chemotherapy plan toward the end of September.

Why old-fashioned chemo instead of a new clinical trial or some other cutting edge thing? It's really about a strategic long game. Since I have had a little bit of disease progression while taking an already cutting edge medication, lorlatinib, the thinking is that my smartypants cancer has mutated again; it has broken loose from the inhibitor prison and is trying to settle new cancer colonies at strategic locations in my body. Chemo is sort of like a posse of old, experienced badasses working with the new kid (lorlatinib), all of them aiming to take out the renegade cancer before it invades another sector. Chemotherapy works differently than an inhibitor. While an inhibitor targets the cancer cells just at the molecular DNA level like a laser, chemo guns for the entire cell; it's cytotoxic. Using chemo is like hitting the cancer with a bunch of shotguns, and the inhibitor is the laser, so we're tackling the cancer in two ways. While the new kid is laser-targeting the DNA, the old-fashioned chemo posse is taking out the cells that the kid's laser might miss. Once we've put that renegade cancer to rest, the hope is that I'll be able to work with just the laser lorlatinib for a little while longer, as it has fewer side-effects than chemo. In fact, the chemo side-effects are one reason we don't use that therapy as a first line of treatment when targeted therapy is available. However, the chemo we have to fight ROS1 is fairly effective in the short term, and it is pretty well tolerated by most patients (hope I'm one of those!) The plan now is to do four courses, which means I'll be finished just before Thanksgiving. If/When I have progression after that, I may be able to enter another clinical trial for another new inhibitor at the Sarah Cannon Center here in Nashville.

Here's the upshot -- I am likely not going to be cancer-free unless research really speeds up a lot. 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 after 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.

Journal entry by Leslie LaChance

At big cancer centers and hospitals, radiation oncology is usually in the basement, which makes sense. I mean, we are talking about radiation, and the most prudent place to keep it is underground, right?

So today John and I went back to the basement to meet with the radiation oncologist once again and make a plan for my upcoming brain treatment, which should happen before the end of the month. This time, all the insurance approvals are in place, so this week I'll have a super-duper planning MRI, which is different than a regular MRI because the images are "sliced extra thin," as the doc says, to give a better sense of exactly where and how big those tiny tumors are. Then, on Friday, we'll have a planning simulation to collect more information about the best way to get at the tumors. After that, the rad onc and the physicist will spend a week or so doing the big maths to calculate all the angles and rations and such to set up the workings of the robotic Cyberknife machine that will administer the radiation, probably in four treatments, one for each li'l spot. Those treatments could start late next week or the week after next, depending on how all the planning goes. After all that gets done, I'm told that I am likely to spend the next few weeks sleeping it all off, so I'm not making any plans for late August or early September.

I'm not super thrilled about having to get this aggressive treatment, but it's the best option available to me right now. The hope is that it will stabilize metastasis to my brain so we won't see more tumors there. I know from my research that the procedure is standard of care for folks in my situation, and most patients have very good outcomes. I like and trust my radiation oncologist, Dr. Casey Chollet-Lipscomb. She's brilliant, she's funny, and she laughs at my jokes. I love it when I can make oncology professionals laugh.

Journal entry by Leslie LaChance

So...scan results were...mixed. The good news is that Li'l Spot is already shrinking, so it looks like radiation to the retroperitoneal lymph node was successful and Spot is on his way out. The bad news is that I have four more li'l spots. On my brain. And they are in different places than the spots that showed up in 2018. They are teeny tiny...measured in millimeters. But they are clearly there. There's also a spot of some kind on one of my kidneys, but the radiologist didn't think it was cancer, perhaps an infection or some other kind of obstruction.

I didn't walk out of the doctor's office on Tuesday with a treatment plan, which is fine. We just spit-balled a few ideas...Should I go into another trial for another tyrosine kinase inhibitor (TKI) called repotrectinib with Dr. Shaw? Should I take a break from TKI's altogether and do a few rounds of chemo and radiation and then go back on lorlatinib? Or no chemo and just radiation? Should we do a combo of lorlatinib and chemo after brain radiation? Should we....? So after a bit of this spit-balling, my doc, Melissa Johnson, says, "Look, let's talk again on Thursday after I talk to Alice." And that made me smile, because my new oncologist is on a first-name basis with Dr. Shaw. She's going to consult with Alice directly. With two great translational cancer researchers on my case, they're bound to come up with something smart that will hold the cancer back for a little while longer.

All the options presented have their drawbacks, of course. It would be nice to think that all I'd have to do is make a few trips to Boston and start taking Dr. Shaw's new magic pill and, poof, my spots would be gone again, just like the last time this happened. In reality, the new drug, repotrectinib, is still in early trials, and the results so far have been a bit mixed. It's especially promising for cancer that's developed what's called the G2032R resistance mutation, but right now, my tumor genetics aren't showing that one, so I may not even qualify for the study. Plus, since I've already burned through my first two TKIs pretty quickly, there's a chance the same thing would happen with a new one. And, well, radiation and chemo, the more conventional treatments, take their tolls in other debilitating ways with which most of us are familiar (puking, baldness, skin problems, heart problems, kidney problems, and other delights). Like TKIs, neither of those treatments will cure the cancer but will only keep it in check.

So you think...well, what's the point? Why put myself and my family through that mess? Wouldn't it make more sense just to go with the natural flow of things and say screw it to more medical treatment? Indeed, every single day I think the most sensible thing would be to walk away from the American Medical Machine, this inefficient clunker of a healthcare system, this giant money pit that mostly makes people sicker. Everyone run for your lives, right now! So why don't I? Here's the dumb human answer: I want more. More summers. More fresh tomatoes. More hikes to more waterfalls. More time to be with family and friends. More time to be. Even if that time involves fretting and puking and financial ruin? Gee, I suppose so.

At a certain point those of us with metastatic disease have to make the call the quit the racket. Sure, we'll keep hanging on, hoping for that miracle cure. Sure we'll try the alternatives – mushrooms, reiki, drum circles, whatever. But eventually the returns on treatment of any kind, empirically tested or otherwise, will get smaller and smaller in the face of a disease that has its own death-wish programmed right in. And you have to decide.

I'm too addicted to life to quit the racket yet, so I'm going to give the dice another toss and watch as they land on hope.

Journal entry by Leslie LaChance

My first set of scans post-radiation will be this Monday; I'll see the onc on Tuesday to discuss results and talk about what's next. Here's what I KNOW for sure I can expect:

Because these scans are happening just a few weeks out from radiation, Li'l Spot will likely still show up on the CT of my body, but if the radiation was effective, the tumor will be dying. It can take weeks or months or even years for an irradiated tumor to disappear, and sometimes the spot never really goes away; it just stops growing and/or becomes shrinking, necrotic tissue that still shows up on scans. If the radiation is not successful, then the spot comes back. That means, of course, that this new set of scans on Monday won't be a great indicator of how effective the radiation has been so far, and we'll have to continue to keep an eye on Spot because he might or might not be a zombie. So why am I even having the new scans, you ask? Well, to make sure there is no other new progression that could have turned up in the weeks I spent waiting for treatment of this one Spot.

I'm a little anxious, yes, but no longer paralyzed by fear. Currently, this cancer is not curable; but it is treatable, and I have accepted the fact that my little miracle lorlatinib pills aren't necessarily the longterm solution for me. However, there are other treatments (radiation and chemo and several other drugs and combination treatments in clinical trials) that may help control the disease. It might indeed turn out to be true that what I have is chronic and dangerous, but perhaps not as quickly fatal as we'd once imagined.

There are a few scenarios that could play out here this week:

1)If the CT scans of my neck, chest, and abdomen, and the MRI of my brain show no additional progression (except for the remains of Spot), then we'll probably stay the course on lorlatinib and scan again in 12 weeks. We'll keep going on like that in 12 week cycles for as long as it takes new progression to show up, and then we'll change treatment plans when we really have to.

2) If the scans show other new spots, depending on where they are and how big they are, we'll have to come up with a new treatment plan and put it in place fairly quickly to keep metastasis in check.

Obviously, I would prefer option 1, over and over again. But it's not up to me.

I've been feeling okay since radiation, except for fatigue, which is expected, and a little shortness of breath, which may also be a side-effect of that treatment. So, I'm grateful for the relative good health, and grateful that I have had time to rest. I am also grateful for every breath, every flower I get to see bloom this summer, and every fresh-picked tomato I get to eat with my own basil and farmer-fresh mozzarella cheese. I am also grateful for the company of family, friends, and two annoying-but-adorable little dogs sharing my path. Thank you all for your good wishes and prayers.

Journal entry by Leslie LaChance

So it really happened; li'l Spot got treated with radiation last week. Three rounds, one each on Monday, Wednesday, and Friday. I'm not sure whose ass got more kicked, mine or li'l Spot's. Hope it was Spot's. Sorry, not sorry Spot.

Side effects, oh hell yes! Ya don't take a bajillion Grays of radiation with no after-effects (okay, probably exaggerating there about the amount of Grays). I mean, just look at all the Marvel and D.C. superheroes who have tangled with radiation! My side effects haven't been nearly as glamorous as theirs. Just some nausea and some deep fatigue – profound fatigue like I've never known, like the flu only hints at. And three days out from my final treatment, my ass remains kicked, which is why it's taken me so long to get to this post. 

If you haven't had radiation, I hope you never have to, unless you get some real superpowers from it. The treatment itself is not horrible; heck, you don't even feel the gamma rays going in. It's what comes after, the nausea and profound fatigue, that I wouldn't wish on anyone. The greenish-blue glow is kind of cool, but I don't think they'll let me in the Kroger looking like this.

Anyway, the anti-nausea drug has kept the worst of the pukey side effects in check; the only really bad day for nausea was Wednesday. And yes, I'm sleeping LOTS, probably an average of 12-16 hours if we count all the naps. When I'm awake, I seem to be in some kind of post radiation funk of mild depression and confusion at losing a whole week.

In Cancerland, people with metastatic disease are always talking about "the new normal," how so much of a cancer patient's life starts to bend itself around this disease, how we do things to our bodies we'd never dreamed of just to get a few more years or months with our dear ones. I spent a frustrating two months trying to get treatment lined up, at one point giving myself such an anxiety attack I didn't want to leave my house. Shortly after that terrible few days of my being balled up on the floor with anxiety, things began falling into place, and a treatment plan emerged, but it wouldn't have if I hadn't persisted and if I hadn't had the help of another lung cancer survivor, my rescuing angel Patty Watkins. I had to focus. And it was not what I wanted to do.

What I wanted to do was forget I have metastatic cancer. I mean, I can't feel the tumor. It's too small to cause any discomfort. And I didn't love the idea of pouring toxic radiation into my body on top of the already mildly toxic oral chemotherapy I take daily. Maybe I should just have forgotten the whole business. Another person whose blog I follow, Linnea Olson, had recently written about "forgetting" her cancer for three months and the disease showing up as stable (no progression) in her scans after she'd spent a month relaxing in Italy. Maybe that would have worked for me.

But that's not what I chose, this time. Getting Li'l Spot zapped before he got to be a bigger Spot, or multiple Spots in other places, was the right thing to do. It's not a decision I regret. What I do regret is the fact that I let my anxiety about treatment, about the disease, and (perpetually) my anxiety about my next set of scans get in the way of my joy. I can't say that will never happen again, but I'm going to try much harder not to let the disease rule my will or steal my joy.

Journal entry by Leslie LaChance

So, apparently, this is a place to write about illness and, with luck and a bit-o-science, recovery.  I don't know how to write about either of those things, because what illnesses I have suffered have been small, and recovery has come easily and with certainty.  My own illnesses and recoveries have never seemed worthy of the attention writing compels. There have never been any questions about them.  But as of Thursday, November 9, 2017, there are lots of questions about both. Questions lead to contemplation, and for me, contemplation sometimes realizes itself in writing. 

I've had respiratory problems my entire life; bronchitis, sinus problems, allergies. My mom says that when I was a kid, people would joke that if the wind blew the wrong way, I'd get sick. Sure, I probably had a puny immune system.  But that was also in the days when lots and lots of people smoked, and they smoked everywhere -- in cars, on the bus, in restaurants, in grocery stores, at work, even in hospitals.  I even had a college professor who chain-smoked through his lectures on Romantic poetry. That was also in the days before the EPA and air quality controls were in full effect.  So, I think for lots of us who were young then, the fact that our respiratory systems survived at all is a bit of a wonder. How did we not all die?

In my 20s, I was diagnosed with asthma and have relied on rescue inhalers and corticosteroid inhalers ever since.  This summer, I was having a particularly wheezy time of it, so the nurse practitioner at my local clinic had me try out some new sample medication.  It seemed to help.  And my symptoms abated. And I stopped with the new inhaler after awhile. But.

This fall, I noticed the wheezing had come back and wasn't really going away, and it was especially bad at night. I also noticed that I was getting short of breath when I climbed the six flights of stairs to my 3rd floor office at work. I went back to the clinic, saw the doctor, and asked her to write an actual prescription for the medication I'd gotten over the summer.  She said if I didn't feel better in a month to come back and get a referral to a pulmonologist. I also got a flu shot.

The next day, I went to see my regular bodywork/massage/physical therapist.  As she was doing her visual evaluation of me, she spotted a puffy lump just above my clavicle on my left side.  That was new.  It hadn't been there a month prior when I'd seen her last. What was it, we wondered?  Perhaps a reaction to the flu shot? Perhaps something worse? I waited a week to see if the lump would go away, but it didn't.  The rest...well...that's why I've opened an account here at Caring Bridge.  It seems I'm gonna have some 'splainin' to do.

That lump?  It turned out to be cancer. Of course.  After a sonogram and a CT scan showing adenopathy there in my neck and along my trachea, we suspected lymphoma, which wasn't so scary because I knew it was likely treatable and even curable. But, after a needle biopsy of the lump, we learned that I have lung cancer. Adenocarcinoma.  In my lymphatic system. And that shit's never good.  Adenocarcinoma pretty much presents only in a later stage, so that means I've been walking around with cancer in my body for a good long time. It's already moved in and is trying to make itself a permanent resident. Yesterday, I explained to the cancer that I need my body more than it does, that I was going to have to ask it nicely to leave, and that if it didn't, I was going to forcibly evict it.

Tomorrow, or, er, later today (since anxiety keeps me up at night, and it's already Wednesday) I'll have a bronchoscopy to get a better look at what's going on.  After that, I'm assuming there will be oncology meetings, probably more diagnostic work to stage the cancer (PET scan? Bone marrow sample? Genomic testing? Other?), and we'll come up with a treatment plan if treatment is to be had.

Here's a lovely irony. Recently, I've been wishing for some kind of big change in my life.  I've been doing the same work for over 30 years; it's good work, but I have begun to feel like I need to look at other things, to do something a little more adventurous.  I was considering retiring early, learning some new skills, starting a business, freelancing more, blah, blah, blah.  Instead, the universe has handed me something that I cannot control.  Guess that'll teach me to start making plans, eh?

So for the next few weeks I imagine there will be more waiting, more appointments, more testing, more waiting, some additionally scary bad news, and some hard decisions.  I'm astounded at how slow the process is.  I mean, inside I hear this panicked voice screaming "I've got cancer! Pay attention to me! Treat me right now! The sands are slipping through that hourglass! Let's go! Chop chop!"  And the world just plods on at its excruciatingly bureaucratic pace of insurance pre-approvals and referrals and appointments and more appointments and answers coming in slow drips.  Protocols are protocols. And, well, the bureaucracy is just made up of people doing their jobs, and one more set of medical records to tend to is just another burdensome task. I get it. I saw Brazil. I haven't got the Form 27B/6.

And for me too, there's still the getting up and going to work every day and forgetting sometimes, in the busy day to day, and then remembering again when I climb the stairs.

In reading about this cancer, I've come across information regarding lung screening, how more or less routine lung screenings are being promoted for early detection of cancer, in the same way mammograms are promoted for early detection of breast cancer. Pap smears, PSA tests, all that cancer-sleuthing stuff seems such an ordinary part of the landscape these days, at least for those of us with good access to healthcare.  And I find myself wondering, of course...since I have a history of respiratory illness...shouldn't I have asked for a lung screening a long time ago?  Shouldn't I have somehow suspected that my asthma symptoms might have been masking something else? Not might have been. Were. Are. Definitely.

But, I can't worry about the woulda/coulda/shoulda.  I've got to think about what's now and what's next.

Circling around in my brain the past couple of days is a scene from The Martian with Matt Damon.  The dude's stranded on Mars and has to figure out how to survive with what he's got. His answer? "I'm gonna have to science the shit out of this." So, that's what I'm fixin' to do.

And even though I believe in science and empirical evidence, and methodology and all that...I also know that some part of science is serendipity, and even plain old luck. And in the bigger picture, because I am sometimes spiritual in my inclinations, what I might want to call luck is actually a kind of grace.  So that's what I'm asking for. Some grace. Some mercy. And of course, one mustn't ask for such things if one is not prepared to give the same.  Hold me to it y'all.

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Leslie’s Story

Site created on November 14, 2017

I'm a poet, freelance writer, teacher, yogi, foodie, and lover of art and beauty.  I was diagnosed with adenocarcinoma non-small-cell lung cancer on November 9, 2017.  Here on Caring Bridge you'll find a journal I have started keeping so that family and friends who subscribe can stay updated on treatment and outcomes as I make the journey through cancer-land and survival.  This story is a work in progress, and I have no idea how it will end, but I hope you'll join me, my family, and friends for the telling of it.  I hope too that you will tell me stories of your own.