This year September is also The Sweet Spot. I’ve done chemo and radiation and am now solely on the daily targeted med we all hope will keep me around for “awhile”. I feel pretty damn good. Not quite where I was a year ago, before diagnosis, but close enough to know this is the apex. People keep telling me, their voices full of surprise and wonder “You look great!” I made myself a tee shirt that says, in small print, “I make Stage IV cancer look good.” It’s a nice light heather grey, goes with everything all year long. I’ll wear it until it’s no longer truthful.

On my mind right now is the pressure that those of us in the cancerverse feel to “do epic things” before we die. Some call this a Bucket List. I have vacillating ideas of places I’d like to see, some for the second time maybe, nothing definite, no airline tickets actually purchased. Occasionally I panic. Am I wasting this time I’ve worked hard to gain? I don’t believe so. Epic things are fun, adventure is alluring, immersing in other cultures is deeply educational and rewarding. These are things worth experiencing again and I will, with my husband and dear friends, when I begin to trust this feeling good again situation.

Meanwhile, yesterday, I sat in the warm early Fall sun outside a coffee shop with a friend, splitting a delicious crepe for lunch, catching up on all the news of life and it was perfect. There were misty eyes, huge laughs, and comfort. Tonight, we are having dear friends over for dinner. We’ll shop, clean up the house, cook and enjoy conversation long past our bedtime. It’s also time to plan a crafting getaway with some like minded gals, an excuse to gather away from our worlds and spawn hilarity under the guise of creativity. I’ve signed up to curl at our local club – yes the unique sport on ice with sweeping – and it will be fun to be back after missing last season to stupid cancer.

Are any of these situations epic? Nope. They are simply the stuff of life. I am alive to partake and enjoy them when I didn’t know I would be. I am not a talented enough writer to impart the utter pricelessness of the ordinary day. There isn’t a way to gift this awareness to those whose lives have not be knowingly limited. Any of us could die at any time, some of us just know it’s coming sooner rather than later and it flavors every decision we make. It also makes us deeply grateful for every bonus day allowed - when we aren’t raging mad about why we have to be grateful in the first place.

I told my friend yesterday that although it was a shiteshow to be diagnosed with late stage cancer, I’ve been lucky since then. And I have. There is an awesome cancer center right here in my hometown. Despite insurance trying to kill me off sooner with treatment denials, my Doctors persevered and science got done. We are financially comfortable for now, I have a good brain for research, side effects have been annoying but mild, my support system is VAST and here I am going strong, almost a year past diagnosis when “some months” was the vague prognosis at the start.

It still could be.

But not today. This perfectly, ordinary bonus September day

.

I started clearing plates so dessert could be served. Our dining room is open to the kitchen and I listened as my husband and friends laughed and talked, even tried to contribute a comment or two from afar. Hell, even wildfires, politics and diarrhea lettuce are better topics than cancer. Soon I simply went quiet. As I loaded plates into the dishwasher, I looked over to my loved ones and realized that at some point in the future, that will be the scene: no Laurel at the table. This is the moment allies of toxic positivity would chime in about relishing being in the present and embracing joy but honestly, it just left me freaking sad.

*****

My life had shrunk down quite a bit already with early retirement a few years ago. I didn’t mind. I found I was never bored and the slower pace felt healthy and sustainable if at times lonely. Traveling, creative pursuits and recreation added interest to an otherwise quieter scenario. Then I was given an incurable cancer diagnosis with side effect constraints and life frankly lost vibrancy and gained tedium. Chores used to be things that were crossed off a list. Now they’ve become major achievements in my day. There is a whole medical appointment calendar to maintain, another for meds and supplements, endless research to do, messages to the care team to compose, side effects to manage and log, the clutter of life to purge. Living with cancer is remarkably time consuming and emotionally draining. An eerie atmosphere of treading water permeates these weeks that are passing by much too quickly.

All this disease administration adds absolutely nothing to sparkling social interactions.

There is a chance I am fading away into the walls before I actually pass away from cancer.

*****

The day after the aforementioned dinner we had bright day away with another couple to a local city’s awesome art fair followed by dinner at mutual friends home there. Of course, arrogant cancer creeped in. Laurel has “special needs”. I required sustenance as it was 2:00 and breakfast was long gone. Frankly, so did everyone else but I can’t ignore it like they do as I am trying to maintain weight while the rest of the world seems to be trying to lose it. A quick grab at a food truck doesn’t suit the princess of a digestive system cancer treatment has left me and my back was cranky from all the slow strolling and needed to sit. Stir in ever-present restroom anxiety and it’s officially a buzz kill situation I very much prefer to down-play. A sotto voce “Laurel needs…” from my friend to her husband and just like that, I become a situation to manage. Genuine loving concern is translated into a litany of questions; “Will this menu work? Will you be warm enough? Is this table ok?” Something we normally would choose together becomes all about me and I have to make the decisions.

This is embarrassing, frustrating and doesn’t vibe with my declaration that “I am not my cancer.” I am grateful but also a grown ass woman who has survived much in my life, not some fragile flower. Yes, I have Stage IV lung cancer and the treatment can be rough but I’m gratefully doing remarkably well. I work out with weights, ride my bike, hike, clean my own home, care for my garden and as everyone tells me “look great!”. I’ve even learned to ask for help or announce any needs or accommodations. To be clear, we haven’t yet reached the inevitable time of fussing. Fussing now transforms me into a cat whose ears go flat right before the hissing starts.

Later, dinner was a gift. It was wonderful to tour our friends’ retirement home (a true oasis), take in their amazing and inspirational creative endeavors, witness the joy and grace they put into every day. Because of a life-shortening disease, every day is a “bonus day” for them, a phrase the wife has gifted now to me. I watched as she went about the duties of hosting, undramatically asking her devoted husband and us for anything beyond her reach, not hiding her physical limitations but not abiding any fuss, truly present in all aspects. An elegant and easy strength is her superpower. My admiration is indescribable.

Eventually, I had to insert that I had only another 30 minutes left in my energy tank. I’d not been sleeping much the past few nights and because I rarely drink anymore, don’t get the fun buzz that keeps everyone else going. I also felt the weight of lacking participation and contribution. My voice is not loud and often is talked over when I start to say something. This kind of dead air sits quietly except to attempt interesting questions of others in order to remain connected. I feel like a great-grandmother realizing how life will go on via her offspring, her relevance solidly in the past and the future solely theirs.

*****

The fact that this needs to change, asap, to enjoy the time I have left is not lost on me. Like others with cancer, I’ve got to dig deep and live fully despite the shiteshow daily grind that has been given me, given us. Weird and pathetic as it sounds, this requires a Herculean effort to learn amongst all the other lessons cancer bestows. Still, my own devoted husband and I are blessed with a good life, decent health care and solid finances. Living more, however we envision that, really should be the priority. The fact that adventures, like overseas travel, may have to be cancelled at the last minute, inconveniencing everyone involved, makes planning somber for me. Living and goal setting with this constant uncertainty is uncomfortable as hell and cruelly exhausting. Decision fatigue is real and some are waived to that elusive “another day”. Sadly, that leaves us the whole treading water scenario with me fading away day by day in spirit if not quite yet in body. It’s enough to make a gal go into the woods to howl like a primeval beast. In fact, maybe that would be a cathartic impetus for change. I’m not above trying it.

*****

A “bonus day” should not be wasted. My friend is so plainly living that truth. I think if she read this angsty emotional dump she’d look me in the eye and speak the wisdom that life provides us no guarantees except we will end. How we navigate what life hands us is our choice. A brutally accurate quote from “The Shawshank Redemption” rises again and again in my mind: “Get busy living or get busy dying.”

It should be the choice starting each of my “bonus days”

.

We’re about to get out of town for a couple of days to a lovely Airbnb on a quiet farm with dogs, chickens and Highland Cows. I adore Highland Cows, beyond what is reasonable for a 64 year old. Something about mammals with bangs just slays me. I should right now be in happy dance mode; getaway with my love, cows, quiet, nature hikes, forecast of sun, and a break from this kill-joy cancer.

But then comes time to pack. To remember that I need extra layers for the cold intolerance. Mouth rinse for the mouth sores. ALL the daily meds I am now on that didn’t exist in my world 8 months ago. The gel solution for skin irritations, Imodium for the digestive pyrotechnics, 4 mg Dexamethasone just in case mets in my brain start to swell and cause a debilitating headache, eye drops in case they dry up, peppermint tea for upset stomach, anti-nausea pills if that doesn’t work, Smooth Move Tea (tm) in case the Imodium overdoes it, prescription toothpaste to counteract the assault on my enamel by treatment poisons. Honestly, prescription toothpaste??? I’d no idea such a thing even existed and now it’s my nightly buddy.

I am grateful to still be here, to be alive. Truly. I simply wish there was less daily care burden and more actual living. I spend 10-11 days out of every 21 day chemo cycle first with bully-level fatigue and then as that fades we welcome restroom anxiety to the mix for a fun week’s stay. Rough math: 50% of my life is this and not how many would define living. My MedTeam calls this “tolerating treatment well”. Perhaps I should video one of my bad moments of anger/despair/pain/mortification crying and see how that slots into their tolerance data. There is no end to this chemo; it’s for the “duration”, a charming noun defining whatever today’s guestimate is for the rest of my timeline alive.

Perhaps it’s time to consider another wee vacation, this time from the bag o’ poison. Not giving up, not going off totally, but a pause of 2-3 cycles to regroup, regain some weight and rediscover happiness. We are exhausted with the emotional treading water. Summer in Seattle is a good time to not feel like crap. Is it my last Summer? No idea. Working hard for it not to be. But do I want to spend 50% of it on the sofa under a blanket or gps’ing public restrooms? Nope.

“Get busy living or get busy dying.” Words to live by. I’ll put them on repeat as I pack.

Consider donating to cancer research so those diagnosed after me have a chance at a cure. We need that more than ever as the costs for wars and ballrooms keep escalating and there is nothing left to fund anti-hunger, pro-shelter, healthcare or cancer research. Yeah, I’m in a mood. Whatever.

.

At some point in time, usually 4 months after a cancer diagnosis is shared, the social support texts, calls, cards, etc. slow down. Its natural, well-documented and blameless. It’s how humans human; immediacy is simply not sustainable and we adapt and move on. Yet for the person engaged with the treatment path, especially like me treatment that will never end, the daily reality does not cease. Cancer is boring while overwhelming, lonely despite friends and family, surreal in the attempt to live large while also preparing to die.

What does a late stage lung cancer fighter need? The real answer is for this sucker to be cured, dammit. What I certainly don’t need is to live long enough to witness a humaned rocket land on Mars, or for AI to display and narrate all the wonders of the Earth in surround vision from the comfort of my death bed, or to read yet another inane story of some billionaire’s excess. No, those things are enraging, especially as cancer research is struggling in this country, amongst numerous atrocities.

One helpful thing for lung cancer fighters is for folks to understand that no cancer is “deserved”. I didn’t understand this at first with my lung cancer as the thought never crossed my mind. My father died in 2009 at the young age of 73 from lung cancer. Yes, he was a life-long smoker. We never spoke about that post diagnosis. Why would we? Did he get cancer because of his smoking? In his case, yes. Did this make it “deserved”. Hell no. And hell no for all the others like him. Its infuriating that lung cancer carries this stigma when no other cancer does. Even worse is it suffers from reduced research funding due to poor marketing. Think breast cancer - everyone likes boobs, and it shows up with money.

I’m a never-smoker. The 20 years I lived in a smoke-filled house put me off it from the get go. I loathe the stench with all the passion you’d imagine from a CPTSD survivor. I’ve a crapton of childhood trauma that’s become forever associated with Lucky Strikes and Newport Lights. I tend toward visceral, scowly reactions to anyone lighting up around me. Admittedly, after a drink I was, on occasion, quite rude about it. Maybe even without a drink. I simply hate smoking.

Imagine the sheer irony I experienced getting utterly slammed with a Stage IV incurable lung cancer diagnosis just after my 64^th birthday when I was feeling incredibly healthy, top of my game level, let’s go enjoy early retirement damn good. Did I deserve it for being rude to smokers? Only Universe knows and that wench reveals nothing. But I refuse to think in terms of guilt. Childhood provided enough of that too.

Moving on. Another helpful thing is for friends and family stop fearing saying the wrong thing. (Other than “You deserve this”. Let’s all agree that is a no-go.) Please understand there is no right thing to say, although there are several “colorful” things that are quite acceptable to blurt out with abandon. Just don’t go silent if you really do care about us. Cancer Ghosting is sadly a thing and it hurts like a hangnail in your soul. I’ve had that experience, even with someone once a friend for 25+ years. That has happily been balanced - broke the scale entirely - by the legion who have reached out across decades and miles.

Meal trains, cards, gift certificates and trinket gifts are all lovely. But at some point the cancer fighter starts to cope better and may find cooking meals to be therapeutic and eating out/take out not the healthy strategy they’ve decided on. Or they now have a to-do list of possession purging to do (its a thing) so all the new little gifties become part of that. It hurts to recycle those beautiful cards we receive but again with the purging. And really, you’ve no idea how many of those softie (plastic based) socks end up at Goodwill or other donation centers. Donate socks in our name instead. Donate to anything in our name and we’ll feel supported.

So then what else is there to do? We fighters know we are no longer who we were; less spontaneous, less energetic, perhaps a bit less fun overall, eating and drinking aren’t big activities anymore. Trust me, we mourn “before us” too. Every damn day. We try to rally and want to be ourselves but treatment can suck the life right out of us. It is well-designed to do just that. But please don’t give up on us. We need you and your vacation and dating stories and work and family issues and daily real-world normalcy. Please yes, absolutely talk about yourselves, share like you always have. Our ears still work and we want to be seen as more than our cancer and crave anything that cancer is not.

There will be good days, just not always a date we can point to. Penciling in will be the norm and that needs to be ok. Cancer is unbelievably isolating so your text/picture check ins are a bright spot of connection. Invitations tend to stop coming, but again there are good days, trust us. Can we have carte blanche to cancel as necessary? Go out for cocktails, but ours might be a mocktail. Plan the dinner party but with the thought you may have leftovers. Hikes and runs and camping can be planned but with others along just in case we aren’t. On days when treatment is kicking our ass, simply sit with us in the weird, sad silence, a hot cuppa in hand and maybe one of those decadent dark chocolate, cardamon, brown butter cookies with flaked sea salt on top.

One of the hardest realities is that life will move on without us. We watch it happen like some wrenching slow motion reel. Is it a slow enough vehicle we can catch up and ride along for a bit? We will give it the Herculean try. Maybe reach out a hand to help us up. Part of our fight is devoted to surviving the adverse effects of our treatments which are designed to kill. Another part of our fight is striving to live intentionally within the time we have left, whatever that is. We believe our time with loved ones is worth this utterly impossible effort.

The plan was for another generous dinner date with friends who try and feed us on the regular. I was looking forward to it as we hadn’t seen them in a few weeks and a catch up is always fun with their teenager around. But I had undergone a chemo infusion 5 days before and it started to screw up my insides and leave me wiped out on the sofa. I kissed my hubby goodbye and sent him off without me. No sense him hanging around the cancer wife all bundled up watching Bridgerton in the dark. As I watched him drive away, I felt very sad. The realization hit hard that we were both going to have to get used to me being Not Present - intermittently in the short term and then eventually - definitively - for the long term.

I’ve already been adapting to being absent. Curling at our local club didn’t happen for me as the season’s start coincided with my hospitalization and Stage IV diagnosis. This also meant no going away to other cities for tournaments with teammates, a fun winter activity. There were no lovely fall hikes with wild blueberry treats because I was learning so very first hand about fatigue and treatment side effects. I’ve shown up for a few parties and managed an hour or so, but invites are getting rare. Hitting dinner and a movie with my hubby or a friend requires a carefully timed rest before hand. A spa day with the ladies is a no-go because the poisons keeping me alive make my skin ridiculously fragile. So many things go on without me knowing. Humans are naturally adaptable; my world is moving on without me. This isn’t to say friends are not here for me. Its more like I am not here for them.

I am missing from places that once witnessed my smile, my humor, my attention.

The famous line Red delivers in the film The Shawshank Redemption knocks on my thoughts pretty regularly: “Get busy living or get busy dying.” Of course I understand I am not yet a ghost, haven’t faded away and am very much alive. That said, the daily attempt to balance “striving to live” with knowing “it could all end within months” is damn near impossible. Its overwhelming and heartbreaking and some moments enraging. I’m a planner with highly evolved anticipatory skills. Living day by day and making all plans cancellable, like some narcissistic 19 year old with a trust fund and a passport, is not my way. It makes me anxious and no one wants that. And yet, isn't not making plans, setting goals, having people, places and activities to look forward to, just another form of death?

There is a chance that treatment will stabilize my current healthy-ish status for some undefined time before cancer eventually wins. I do not look or act like a Stage IV cancer patient. (That may change a bit as my hair keeps shedding and chemo drones on.) I recently got back on my bike for a brief ride with my supportive hubby and plan on doing more. Walks have lengthened from around the block to around the lake. My dumbbells are not gathering dust. I just took my first plane ride and it went fine. The gals want a getaway weekend and I can almost wrap my head around how that will look. They would need to know, like my husband does, where the nearest ER is “just in case” and what it looks like for me to need one. That is the new reality around me: google the best coffee shop and nearest medical assistance.

Obviously, logically, I can stubbornly show up to some of the places that may remember me, to remain present, to not fade away. Thanks to generous cancer, many things will go on without me, but with grace, some may wait for me to catch up.

I can choose not to be absent until that choice is taken away from me.

Hubby still gets to curl now. I got one match in before my Stage IV diagnosis this fall and haven’t been back. I miss the sport and the friends and acquaintances made there. I see some of them now outside of the club, but the twice weekly smiles and fun competition are absent from my routine and I am really feeling the lack.

Curling rolls out into the collective consciousness during every Olympic Games cycle. Clubs all over the country see the “curling curious” stop by or sign up for Learn to Curl sessions. They get instruction on the ice and try their hands at the ancient sport only to find that its not as easy as it looks. That is what hooks so many. The need for the body to balance on slick surfaces, the mind to strategize the shot calls, the spirit of wanting to put in the practice time and the sportspersonship involved in all aspects of of a game are alluring to many. Often there is a bar, for beers or non-alcs. Winners buy the first round post-game and the competitors sit and enjoy one another’s company. That is just as important an ingredient in the game of curling as all the physicality and mental strategy.

The civilized appeal is real for so many.

Right now the Olympics are underway and curling is featured again as the curiosity it is. For me, its a tad bittersweet as I miss doing it instead of simply watching. That said, my strength is returning and I think getting into the hack again to send a rock down the sheet could be soon. Its a matter of balance. All things in cancer land are. Will my strength hold? I cannot fall with mets on my spine. There is a similar situation in curling; is the shot called too risky? Or does the reward of winning the game make it worth it? It ultimately depends on where you are in the match. Risk vs Reward is a constant theme in both curling and cancer, but as time shortens, the Reward shines especially bright.

While I am cancer “stable” at this moment with absolutely no guarantees for the future, perhaps its time to test getting off the sidelines in so many ways.

Its 11:30 on a Monday and I’ve done about all the treatment research I can for today and its time for us to head to Fred Hutch for yet another scan, this time a contrast CT of my chest. It will be looking for cancer progression to perhaps seal the proof that the first line treatment has failed after 3 months.

How I wish the targeted treatment worked for me as it has for so many others, some for years. I say again; I just hoped for one. One year. This scan will determine progression, what length future I have and what new treatment might provide it.

Later today will be a video call with my Oncologist to discuss last week’s MRI results, which showed stability in my brain, as well as the next treatment option. Why this happens today before the CT scan results are released seems ominous. I am not looking forward to this discussion as the hinted at treatment is, frankly, hideous. The side effects feature a full-on assault on dermatological tissues: skin rashes, weeping scalp wounds, mouth sores, finger and toe nail infections, intestinal lining aggravation, and other “sensitive skin area” involvement. Imagine a leaper with raging acne and a STD.

There is a chance I’ll get lucky like a few others on this drug and the side effects won’t affect me as much as they have other cancer patients. Or perhaps the steps and meds taken prophylactically will help keep the misery at a low level. But ultimately I have to decide: Is this how I want to spend my last months alive?

***

The contrast CT went well. I drank almost all of the iodine prep in the 40 minute time slot, got in the water follow up, and the nurses all praise my “great veins” for IV placement for the IV contrast. My creatinine levels are good so my kidneys should handle it all just fine. I’m told for the nth time that I look “so healthy” for stage IV. The scan itself only took about 10 minutes, with a 15 minute observational period to ensure no adverse effects crop up. I am home now getting warm again, eating comfort via soup and drinking nettle tea to assist with detox. It’s pretty interesting how the contrast turns your urine Seahawks green. Cancer means damn near daily stating “Well that’s new. Interesting...”

I’m going to sit and enjoy the cats purring, my tea and Wordle game until the video call. Down time is vital, especially during times of decision fatigue. I know I cannot outwit cancer but there is a lot of energy expended bravely trying to stay one small step ahead of it.

***

Now I am really tired, emotionally. The video call went fine but really wasn’t all that productive. The official results from today’s CT are not written yet, although my Oncologist can read the images and says it looks good. The three tiny “new’ lesions noted in the last CT are still there but not any larger. I am told this is positive news. I, of course, had hoped they were a mistaken blip and now gone so my expectations might be a bit off and my resulting disappointment my own fault. Hope is Cruel. I keep returning to it like an addict.

So its Hurry Up and Wait Time again. The CT scan will need a tech review, be checked by another tech, read by the resident expert and then written up. At that point my Oncologist will review it all again and lay out the best next course of action; either keep on with what we have been doing until the next round of scans or introduce the drug I fear will turn me into a miserable hermit. And I get to choose. Lucky me!

I should’ve done a work out today but it just isn’t happening and that has to be ok. I do have tomorrow. It’s nice to be able to count on that, for now. But not much got done today, no projects, no visits, no fun, just cancer. There are a couple of texts to answer, dinner to prep, a bill to pay and a litterbox to scoop. Cancer doesn’t negate chores. That would be a plus. No, it just sits there, taking up residency in my life like some ill-mannered house guest that simply won’t take a damn hint and go away. In my case it will never go away, so our détente continues. We are both strong willed, cancer and I, but ultimately I will lose this skirmish. I really hate that knowledge.

At least hubby and I can watch an episode of The Pitt later. And with cookies a neighbor dropped by. Such distraction and treats are priceless. Then there will be book reading in bed, with sleep to follow. And that’s it, another day done.

Maybe tomorrow I’ll wake up with a fun idea for the day to show cancer who is boss.

Yesterday, after the luck of finding a beloved lost earring with only minimal searching, and then getting an expedited brain MRI due to a cancellation, I thought about buying a lottery ticket. A jolt of truth hit when I realized that we don’t need the money; our retirement is set as one can be. I just have no time to share the joy of it.

You can’t buy time and there is no negotiating with cancer. Death, having a modicum of nobility, might play along with some give and take but cancer is a thug with no scruples. I loathe everything about it. Even the hard lesson of how precious our lives truly are comes at too high a cost for me; barely any time to employ it.

There are plans you entertain when you are in hope mode of having a year or so of progression free survival (PFS). But what the hell to do with only a couple of months? I, like others in my situation, don’t really want to jet off to exotic places and party like its the end of the world as we know it. First, time with loved ones is what is most precious; the every day normal acts of living are what ground us. Talking with my friends and telling them I love them seems more important than rockin’ selfies in some picturesque locale. Second, I’ve never felt so damn vulnerable. Going anywhere necessitates a “just in case” apothecary for side effects that would rival any anal-retentive parents’ diaper bag. Being hours away from a decent hospital is recklessly asking for trouble. Remember, cancer is a thug, poised to ruin any happy time just because it can. And it does.

Right now it feels like we are back to what my husband calls “treading water”. This isn’t optimal in anyone’s life but especially a shortened one. We have maybe two weeks before all the scans and blood work info is back and we meet with my Oncologist to see if there is any further treatment to attempt that is tolerable. I will try to stop treading and plan a few outings, visits with folks, fun life-affirming activities. But honestly, its a struggle. I witness life moving on without me and its angering. Its hard to be geared towards fun when you are pissed about dying and lonely to be the only dying person in the room. Also, there is so much I still have to cull, purge and donate so that my husband and friends don’t have to. I’m 64 years old, and we’ve lived in our lovely wee home for over 30 years. I’ve got stuff, much of it nice, some to be given to loved ones when I have strength enough to write out a list.

I would trade it all for more time instead. I think they would too. But, cancer.
Insert F bombs at will.

After only 3 months, it looks like the cancer has outsmarted the treatments and is progressing single-mindedly like the Borg to assimilate my life. Naturally, because I am human, I hit the wall and slid down into an anxiety funk which is not how to beat this bully. There were days of researching second line treatments and side effects and asking others who’d navigated this hellish chaos what they did and how they were managing. A long meeting followed with my Oncologist’s RN to discuss questions and possible next steps. New scans need scheduling while I stop chemo and hopefully rebuild some blood cells. Turns out, its hard to get MRIs scheduled even in large cities. I will have to wait a month to get scanned the results delivered.

That’s cancer treatment sometimes. Hurry up and wait.

But cancer doesn’t wait. Although three tiny new lesions in my lungs was the worst news, they’re likely not going to impact me very much right away. But then I got a familiar headache, like the ones that sent me to the ER in the first place. This is a whole new level of hell; 11 brain mets that had decreased could now be growing again, causing edema and cognitive/behavioral changes. I’m scared I won’t make it a month or more to a next treatment without stupid levels of steroids that I’d just weaned off of six weeks ago - or that they won’t be enough to sustain some normalcy.

Its such a surreal state to feel the best I have in 3 months but have life slipping away. Almost as surreal as the initial diagnosis. I want to wake up from this nightmare and weed my garden and plan a trip with my husband and a getaway with the girlz. I wanted a year. I’m not ready to be gone. Not yet.

So, cancer, hear that, you big bully. I’m not ready to be gone. Time to get up off the ground and kick anxiety to the curb. I’ll call your raise, work hard to raise you back. Take a good, long look at me. Note the determination in my eyes and all the love and support that surrounds me. I may be terrified but I am also fierce.

“You don’t look like someone with advanced cancer.”
I went into this shiteshow in the best health and fitness of my life. Sure, I’d just turned 64 and have my salt and pepper calling card for AARP, but my health was great with the exception of rising cholesterol. My husband has lived very well with Type 1 diabetes for 37 years, has cycled extensively, and set a great example to follow. We eat well with a heavy nod to decent nutrition, keep moving, and try not to treat our bodies as an afterthought. Yes, we eat dessert and drink wine; we are not austere deprivationists . I started HIIT and dumbbell workouts during the pandemic and the results felt good. Nothing too intense, 30-40 minutes every other day, and I believe it was the consistency that brought results. Although all this health did nothing to prevent cancer, dammit, it is likely the reason multiple tumors in my lungs, brain and spine - no doubt growing for a year or more - provided no symptoms until August. September was shocker. Non-small cell lung cancer is a notoriously sneaky asshole and often not diagnosed until Stage IV, aka terminal. That’s me.
“I’ve been hearing that.”

“My cousin had a nightmare time with chemo a few years ago. You’re so lucky.”
Its true, chemo and the targeted medication I take have not been the horror story we are all use to when thinking of cancer treatment. So far at least. As mentioned, I’ve mostly kept my hair and both steroids and chemo have kept me looking plump. These are great deflectors to hide my fragile skin and bones, worsening anemia, joy-robbing fatigue, digestive pyrotechnics, intermittent nausea and DVT. They also hide the Hulk green with envy, brewing jealousy I have for the line “a few years ago”. I won’t have a post chemo life. My chemo is for as long as I live, which no one is defining. “Yes, I’m lucky.”

I really am fortunate. Every day is a gift, I am loved and love in return, we are well supported by My Tribe, I’ve had a wonderful life, my husband is amazing, I’m at Fred Hutch in my hometown Seattle so there is always hope.
But I would happily shave my head, puke copiously for weeks, look like death warmed over and take to my bed for 3 months if it meant I would live to see my 50th wedding anniversary.

There has been good reason to flirt with hope since my initial diagnosis. After several weeks on the daily targeted medication (Osimertinib) plus the first two rounds of chemo (Carboplatin and Pemetrexed) my scans in mid-November showed marked tumor size decrease plus a few resolved (aka killed off). For reference, I have 11 lesions in my brain, 3 on my spine, a wee thing on one adrenal gland, several small ones littered in both lungs and the “OG” origin tumor in my left lung. Damn straight that is a lot of cancer for a healthy, petite gal. Hope is cruel; bring it.

Additionally, I am tolerating the chemo well. To be fair, after my fourth infusion of the poisons designed to keep me alive - delicious irony that - I am feeling the accumulative side effects a bit more. I could list them, but really, its all TMI yuck and I’ve done enough research to understand my situation could be so much worse. Shout out to my other cancer warriors facing the far worse with steely resolve and deserved tears and swear words. Hope is cruel; look her in the eye.

Let me share a bit of raw honesty about a personal loss; I will never return to the fit and physically confident woman I was just 4 months ago. I’ll never look like her again either. True, I am not bald or emaciated, but my face has a different shape that makes my smile different, my left calf will always be swollen and veiny from DVT, my stamina is weak sauce and my bones and skin are annoyingly fragile, requiring special care. To be blunt, parts of me have already passed and I’ve yet to find a meaningful and productive way to mourn them. But hey, as everyone points out, I still have my hair. Hope is cruel; get over it.

Now to the present. My recent scans of last week were mixed. Some good news, some not so much. I got the written MyChart findings yesterday afternoon but won’t get my Oncologist’s take until next week. He may well spout optimism and all steam ahead. However, there was a gut-wrenching lack of the word “decrease”, which seemingly was replaced with the most undesirable “additional”. This put me in a chilly downward spiral last night. It feels far too early for this potential turn of events - a direct attack on my hubris stuffed expectations. Hope is cruel. Period.

But today I realized I don’t have it in me to do other than wipe the tears, stomp on my fears and treat this day as the gift it is. My husband is counting on me. My Tribe is counting on me. I am counting on me. Don’t count me out. Hope is cruel; strap in and ride the rollercoaster.

At the end of September ‘25 I was diagnosed with Stage IV Non Small Cell Lung Cancer that had already spread to my brain and spine. It was an enormous shock given I was a very healthy, fit 64 year old recently returned from a vacation in Spain. My symptoms were recent “senior moments” and some vision issues with occasional headaches. No chest issues at all.

This cancer kills more women that Breast Cancer does; predominately Asian women, non-smokers and young, mostly due to the fact that it is often diagnosed at late stage. There is no cure for me so my treatment is considered palliative. I am lucky to have something called a EGFR mutation that a targeted daily drug can battle and this, along with chemo, may give me a year or so to make more memories with my husband and friends.

I have been open and forthright about my cancer and prognosis. I respect those who choose privacy with their cancer journey, but that isn’t my way. This transparency obviously bangs loudly on the door of many peoples comfort with mortality. Americans especially seem adverse to accepting death as a part of life; we are not taught how to walk beside it or sit quietly with its wisdom. We are overly concerned about saying the “right” thing not realizing that saying something, anything is the key. Ghosting has been studied and written about by much more qualified people than me, but now I feel it personally with every silence and avoidance. Its been yet another lesson this journey seems hellbent to teach me. Cancer is very generous that way.

Conversely, people have crossed the barriers of time and distance to send their support. This has been humbling. High school classmates that I’ve only seen at one or two reunions over 46 years have reached out with the most amazingly honest and caring cards, letters and gifts. Friends who live in other countries check in often via WhatsApp texts and videos. Here at home neighbors and friends kept us fed in the early weeks of navigating all the chores, appointments and educational opportunities cancer demands. Neighbors even carved several pumpkins for Halloween and placed them on our porch. Yes, we are blessed. And yes, this is the direct opposite of ghosting and where a smart cancer warrior would put her focus.

Have to end this now as dear friends have arrived as if on cue to brighten our day.
More soon. Happy 2026.