Tag Archives: terminal cancer

Another dawn, another day

A story that bears repeating. Pun intended 🙂

I found this greeting card yesterday at the local Market Basket. It was meant as a birthday card (who knows why) but I shall co-opt it to my own purposes.

This is not the downedest I’ve been (made up word intentional as well). Nope. Almost seven years ago, post progression on my second ALK inhibitor, I was getting chemo yet again. And although I was married at that time, I truly felt alone. 

However, I’m pretty adept at turning inward for the things I need. And what I needed more than anything else was for someone to have my back. Literally and figuratively, as I desperately wanted to be held.

And so I turned to my imagination. Tried out some animals in my head (yeah, I’m a weirdo, I know). A wolf, a lion, and then a bear. Bear seemed just right. Kinda cute and cuddly looking but also potentially lethal. Just what I was looking for in a pal.

In my mind, bear was holding me. Big spoon, to be more explicit, those sharp claws resting gently on my forearm. ‘Bear,’ I said. ‘If you will just stay beside me while I’m going through this shit, I’ll make a deal with you. If I die, you can eat me. But if I don’t, you can’t.’ I could feel the bear’s breath on the back of my head. Bear didn’t budge.

Right there and then I decided bear would be my spirit animal. 

Now and again, I call bear back. Although as time has gone on, I’ve needed him/her less and less. When I’m feeling strong, it’s a lion I imagine. 

Having bear show up yesterday was a reminder that I’m not alone. Now there’s a chance that bear is hungry. But a deal is a deal and I’m not planning on being dinner.

The struggle is real

Just breathe.

If only it were so simple.

When I’m not coughing I’m wheezing. My left lung is getting boggier by the day.

It sucks, this downward spiral. Been here, done this, doing it yet again.

I mean, I’m tough but this is fucking demoralizing.

There, I’ve said it. Allowed that this shit gets me down. That not falling into despair as I hang on until the next clinical trial that may or may not work takes enormous will power. At times I feel like I’m running on sheer survival instinct. I want to live.

Just live.

Rise and shine

Because what else would you do.

This, my friends, is necessity/habit/resolve at its leanest.

As long as I have the opportunity to do so, I intend to make the very best of each and every day. Right now that means prepping for one particular outcome (getting my affairs in order) while staying open to the possibility that those efforts are in fact premature.

It’s a delicate balance, this living while dying shit. A bit of a challenge, if you will. But–strangely–one I am embracing. It doesn’t get more clear headed than this. I am rapt with attention. As honest with myself as I have ever been. Taking it all in while wrapping it all up.

Acknowledging my inevitable destination (if not now, later) while savoring every moment. Truly present. Unafraid. Aware.

Clarity.

I am at an interesting place. Truly.

Part of this comes from an overriding sense of it’s time to close up shop-ness. A nice way of saying, I might be dying.

That. But also (and this is the scenario I much prefer), all that hard work is paying off. I’m talking about personal growth and my quest to be a better, saner version of myself. Not long ago my son Peter, our little mensch, made the observation that I was at my most reasonable. I realize that sounds like an incomplete sentence but I knew exactly what he meant. It’s a high compliment and just like my favorite word ok, does not overstate.

I’ve been through a little bit of hell in this lifetime of mine. The good news is there is always a potential benefit to struggle. Think of it as stairs versus escalator. They both get you to the same place but one gives you a bit of a workout, thereby building muscle.

I am strong in body and in spirit. And also brave enough to regard myself with compassion but not charity. This is thread the needle time. And if I want to hold it all together I need to lighten the load. Let go of what is not essential. Revel in that which is.

Reach. But also maintain reason. Rise to the occasion.

Eyes

wide

open.

LOVE

I feel it. Coming in from all sides. Cradling me, like a nest around an egg. Buoying me, like the waves beneath a boat. Holding me tight, like one big group hug.

There’s something flipping wonderful about having a personal motto that is ‘all people are my people’. I love me some people. By FAR my favorite animal, and that’s saying something, as the animal kingdom is rife with coolness.

The thing is, when you love other people, they tend to love you back. Magic, that. I mean, really, truly, some special sauce. And the best thing is, you can spread that shit around.

So here goes.

I LOVE YOU I LOVE YOU I LOVE YOU.

xo

Personal skinny

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.

xo

While waking

I share my blogs on Facebook as well and that is generally where I get the most comments. Per my previous blog and the dream about the woodpecker, my friend (and fellow lung cancer patient) Dora Medina-Flagg had this to say: ‘Interesting dreams- especially about the woodpecker. It gave me chills, because as part of my Native American healing, I was given a woodpecker feather and told to hold it near known tumors and focus on the Creator removing my cancer in the same way a woodpecker gets rid of rotting wood while looking for bugs.’

Well, Dora’s comment gave me chills as well. I decided a bit back that I would begin practicing my own form of immunotherapy through visualization. I mean, why wait for Western medicine to come up with a way to ‘harness my immune system’? It’s mine, right? My mind, my body, my cancer, my immune system? Who better than me to initiate healing?

Of course, I’ve been talking to this body of mine all along. However, I’m not sure I could see the trees for the forest.

Cancer has the advantage for a multitude of reasons. And certainly foremost is its ability to spread on a microscopic level. Not only is it difficult to detect, you can never be sure if you’ve gotten all those little malignant cells out of there.

Previously my visualization was rather vague and it occurred to me that maybe I wasn’t paying enough attention to detail. Thinking of the whole tumor instead of those individual cancer cells.

Well, now I’m weeding the garden. Going after every little invasive seed and sprout. And it works like this:

I visualize a single cancer cell (this is going to be an ongoing project). And then I choose my mode of destruction.

Sometimes I pop them between my teeth, like a tapioca pearl. Scoop them out (hey, Woodpecker) like punky wood. Squash, smash, pry, burn. Stomp. Rip. Pinch, Pull. Pick. Tear, toss, turn inside out. Annihilate. One–at–a–time.

Think of it as a pseudo Buddhist (if also violent) form of practice. A meditation of sorts but with a let’s blow this place to pieces bent.

It might just work.

*News Flash! Dora just wrote me this: ‘Woodpeckers are significant to Native Americans because they signify purification of the object upon which they are feeding.’ 

Absolutely perfect. Cancer, be gone. I’m going to purify the shit out of you.

🙂