Tag Archives: living with lung cancer

Funk-ness

I have been feeling rather blue. Deep blue. Indigo. A fatigue that is physical, emotional, spiritual.

Not surprising, I suppose. In sixteen days I will turn sixty. Remarkable, really. I never thought I’d have the opportunity to grow old. It is a milestone, in so very many ways.

It also means that I can now say, with complete accuracy, that I have been living with lung cancer for one quarter of my life.

That’s a long time. And obviously primarily a positive–surviving has always been my objective. But it’s also really sad.

If my life is a pie, then cancer represents an enormous slice.

Choosing to become an advocate has lent my diagnosis purpose. It has been an opportunity to make some good out of what can only be characterized as a personal tragedy.

But there is much that cancer has taken that I simply cannot reclaim/override.

Innocence–mine and my children’s–financial security, the bloom of youth.

And then the loving and losing. It is both the best and the worst part of advocacy. Relationships which transcend the ordinary. Incredibly special connections, each of which has enriched life to an almost unimaginable degree. Precious. Precarious. Often fleeting.

This–and my own mortality. Each new day exhilarating but also exhausting. Life so full of possibility but also portent.

Overwhelming. Odd, glorious, awful. But also all I’ve got. This is it. This is mine. My life.

Until it’s not.

Throwing shade

Just go away, you sticky little bastards.

I talk to my cancer, and that was this morning’s heartfelt greeting.

Yes. After years of hardcore warfare, my body the battle ground, I’m trying another approach.

Not a surrender, not a truce, but rather one in which I attempt to understand where the enemy (that would be cancer) is coming from. Not go high, go low.

It’s such a bizarre concept, my own cells run amuck. Unlike a virus, which can jump hosts, when I die, my cancer dies. Lose lose. Total annihilation.

Of course, it’s wrong to assume that this is not an end unto itself; The End. I mean, we all know this planet’s getting crowded. Of course, in this particular case, it sucks to be part of the solution.

I also think that part of the genius of DNA is the possibility for error. A consistent state of stasis is one big drag. Given the rate at which DNA replicates, errors of transcription offer fresh possibilities. Mutations allow life to evolve but they certainly can wreak havoc on an individual organism.

Which brings me back to my morning conversation. At this point I am at some sort of personal ground zero. Not emotionally (I am fine, really fine) but rather at a loss per how to address these errant cells of mine.

As captain of this ship, I can’t help but feel that a mutiny is under way. “If my body goes under, you go with it.” I tell these rogue cells. “Your ways are self serving and short sided. By gobbling up everything, you shall kill us all.”

Of course I see the parallels—what we humans are doing to the earth is not so very different than what my cancer is doing to me.

“What’s the point?” I say. “Why can’t we all live in harmony?”

These little bedside chats are my attempt to stay reasonable. But cancer is beyond reason. If I am to survive, I’m gonna have to fight–probably dirty.

Hey cancer, nobody likes you.

Cancer, well, cancer don’t care. And that’s the flipping problem.

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting. It would appear that I am going to live. Appear being the supposition here, as one can never be too sure. However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.

Bounce

I don’t do things halfway and when I go low, I go low. Take no prisoners, lethal sort of low.

My face couldn’t couldn’t get out of the way soon enough and so I made a minor mess of it. If you’ve never picked your skin you wouldn’t understand, but if you have, you know. Damned if you do, but in some sick way, self damage is an amazing way to relieve stress. However, just like alcohol, it tends to make things worse the following day.

That said, my mood is on the upswing. Sometimes when you hit bottom you bounce. I plan to take that momentum to propel me forward into some healthier activities. Writing (I’m on a roll), working on my health insurance, going to the gym and yes, painting.

It’s been a long time since I’ve held a brush but my easel beckons. And getting my art on might just be the perfect antidote to much of what ails me.

That, and the always amazing outpouring of love and support that a post brings–both here and on Facebook. Thank you. Know that every message goes straight to my heart in the best of all ways and that as alone as I feel at times, I’m really not. Because I’ve got all of you. ❤

Words matter and this one’s gotta go

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Yesterday was National Cancer Survivors Day, and I just went meh. Wait–make that hell no.

I don’t ‘do’ Survivors Day. My lack of enthusiasm is manifold. First of all, cancer is not a damned day. For many of us, there is no life ‘after’ cancer. Nope. As I’ve said before; been there, doing it. This is present tense.

And then there is the word survivor. I loathe it. Survivor is too much, too little, too late. If you haven’t stopped to read the definition of survivor lately, let me refresh your memory:

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Yuck. Who wants to be the ‘person remaining alive after an event in which others have died.’ Or the ‘remainder’. I suppose someone who ‘copes well’ is a good thing but then again, a rather serious understatement when you are talking about cancer.

The word ‘survivor’ is inadequate. It is also implicitly negative/ugly. No one wants to be ‘the sole survivor of a massacre’–we want everyone to survive. Ever wonder where survivor guilt comes from? Look no further.

In the past I have referred to myself as ‘surviving cancer’. The verb vs noun thing seemed to better capture the fact that I am now and likely always will be in treatment.

However, after thirteen years of surviving, I’m sick of this shit.

From now on, I reject both verb and noun in favor of a far more positive/forward thinking term. I am living with lung cancer.

And you know what? There is no guilt associated with being alive. If you’re not already there, join me.

xo

 

Tested

Kumo can run like the wind. Before I knew his given name I was calling him Ghost but felt that Arrow might be a better choice.

I learned from the get go that giving chase is of no use–Kumo can run circles around me and does. He is also smart and wily and careful not to get close enough that his collar can be grabbed.

This dog absolutely will not come when called and is not tempted by a proffered treat. In other words, approach is totally on his own terms.

With Kumo’s history of roaming, I took no chances and had him microchipped during his recent surgery. But even with that precaution, there is no question that being off leash is something that can occur only in contained areas.

Kumo arises early, and our first walk is taken while I am yet a bit groggy.

This morning my thoughts were elsewhere when I had the unsettling realization that the leash in my hands was suddenly connected to nothing–evidently I had not attached it firmly to Kumo’s collar and it had come loose. Kumo was just ahead of me but at the same moment I realized he was free, so did he. And he was off like a shot, an arrow.

I didn’t know what to do and nor did he. The call of the wild and all those mourning doves were pulling him off and away. And yet, he did stop when he was a good distance away to look back. Suddenly he was running toward me again and for one brief second I thought he would return. Rather, he ran wildly to and fro, close to me, away again, exhilarated by his sudden freedom of choice. Because it really was up to him at this point.

As I sat on the pavement in the middle of the parking lot, my heart pounding, tears quietly rolled down my cheek. ‘This is it’ I thought, my dream of a little white dog over. And so I stood back up and walked slowly to the building. Maybe, just maybe he would follow. And if not, I would go get Appa, the great white Pyrenees who is Kumo’s first and best friend at Western Avenue, and try to lure my little wild thing back inside that way.

I shut the glass door behind me and Kumo came closer. The minute I opened it he bolted. When I closed the door a second time he cautiously approached. I opened it just a tiny way this time and to my great surprise and overwhelming relief, he came inside.

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At the moment he is laying beside me on the couch, pressed up against my arm as I type. We’ve had our breakfast now and he’s licked my bowl clean for me.

I think we’re good.

Savannah!

I have a niece who is enrolled at Savannah College of Art and Design and her family credits me with alerting them to the existence of SCAD in the first place–happy to be of service when I can. My niece, Zola, is wrapping up her third year at SCAD and just came home from Lacoste, France and a semester abroad. Fun for me as I too took a semester abroad in Lacoste back in 1979 when the program was affiliated with Sarah Lawrence.

Anyway, as an extravagant way of saying thanks for my tip off per SCAD, my sister Bink took me to Savannah for a long weekend of touring the city and hanging out with Zola.

It was a perfect trip all the way around. Bink got us an RBO in a beautiful Victorian adjacent to a park and within walking distance of everything. And walk we did. Savannah is laid out in the most unique grid fashion, with one block sized park after another. These little parks are filled with aged oaks dripping with Spanish moss and each has a monument in the center. And the parks themselves are ringed with charming homes and churches; Bink pointed out that Savannah wasn’t razed by fire during the Civil War and in fact was presented by General Sherman (impressed by its beauty) to President Lincoln as a Christmas Gift.

Of course we toured the grounds of SCAD as well and I can only say wow—art school has come a long way. Plush, luxurious, well equipped and an all around creative hive, it’s the sort of place that makes anyone want to go (back) to art school. And Zola is kicking butt in her major, advertising.

I was introduced to some fine southern delicacies along the way (we ate so well). Grits, fried corn, collard greens (which I liked so much I requested a second serving for dessert) and the most beautiful little macaroons. One unexpected highlight of the trip was a ride with an uber driver her told us about going on a cruise where they had a $10,000 prize for karaoke, and her disappointment that she’d not signed up. My sister asked her if she had a good voice and she said ‘pretty good’. We bantered a bit more and the uber driver said something about how she ought to sing to us. We thought she was kidding until she said ‘well I best get to it’, and broke into the most gorgeous rendition of Amazing Grace. This little tiny lady driving an uber while simultaneously belting out a hymn. It was magical. As was my entire trip. Thank you Bink, Zola and family! xo