Tag Archives: terminal cancer

Going for anything at all

Posted on December 17, 2020 | 2 comments

I was exceedingly hopeful that the sound in my lungs had abated. It was almost comical when I realized that it was simply a matter of position–I had been sleeping on my right side and my right side only. Once I rolled over, there it was.

Did I say almost comical? In truth, my left lung offends me. Were it anatomically possible, I would simply reach down my throat and yank the corrupted lobe from its stem. And if you know me, really know me, you understand that I am not joking.

It is maddening to realize that the whole damn affair can be brought to a close by one errant organ. Why must it be an essential one? The appendix is underworked. Could it not spend some of its spare time learning how to breathe?

I will know more after my upcoming scans but I must say that I do not believe this combo is my panacea. If it were, I would not have to stop to catch my breath on every landing as I make my way up the 94 stairs to my studio. And if it were, my lung wouldn’t continue to crackle and hiss and moan.

Oh to draw air freely. To once again be strong and fit and able to believe that I wasn’t simply winding things down.

It could still happen. Part of me believes it will–that there is no other acceptable outcome. But another, rational part of me understands that I am like any other. And that tomorrow is–always has been–a maybe.

xo

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The push and the pull

Posted on November 29, 2020 | 2 comments

My new therapy, or rather combination of therapies, has afforded me more energy. I suspect it is the lorlatinib.

This has felt wonderful. I’ve taken advantage of the amped up feeling to get some major projects done. Long (and rather sad) story short, the vintage clothing business in its current incarnation is kaput. The combination of a pandemic and some major miscommunication between partners and we are no more. Circumstances willing, it shall rise again as a small, manageable, online version. But first things first.

I had to relocate the stock and furnishings, first to one storage unit and then a major downsize to a smaller one. I figure it’s as if I’ve stacked several cords of wood at this point.

There was also an old wooden shelf–heavy as hell–that I wanted to take to my studio. My friend Brian helped me load it into the back of my 4-runner. However, I got that puppy out and up to my studio by myself. My deceased mother (the queen of do it yourself) would have been proud. It was a classic combination of brain and brawn, as I employed physics (tipping and spinning across the parking lot) as well as brute strength (shoving it down the long hall).

My back is pissed as hell right now but there is something oh so satisfying about hard, physical labor.

Of course I wish I could tell you that this surfeit of energy was a positive indicator per the effectiveness of my current therapy.

Not. It is, I am afraid, merely a smoke screen. My shoulder feels better (go figure, after all the lifting) but my lungs sound like shit. When I lie down at night the audible wheeze is often enough to waken me from a deep sleep. A strange sort of bubbling going on as well.

Gross, I know. Even more so if it’s your body. And, fucking A, it means the cancer is just perking along. My big plans and hopes and dreams be damned.

So there you have it. In as plain a language as possible. I am alive but, well, not well. Still strong enough to fight but I’m going to need some more effective tools if I hope to gain some ground here.

And I do. I really do.

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Toughing it out

Posted on November 14, 2020 | 3 comments

Sometimes what doesn’t break you can make you.

This is a blog about embracing the suck.

My mother, Evalynn, was hell on wheels. Smart, sassy and mean as a snake if you didn’t do what she wanted. As a child who was eager to please, that was awfully confusing. That is, until I figured out her modus operandi.

Charming, manipulative, even pleading until that moment where it became clear that I wasn’t going to budge. She schooled me, that one.

I like to say that one of my super powers is not giving a fuck. This is contextual. In truth, I care, really care, about most things. However, my upbringing made me impervious to pleasing those with an agenda.

There was a situation earlier this week that reminded me how polarizing I can be. Fortunately, most people love me (because I love them). However, every now and again, someone dislikes me. To the point of loathing.

Invariably this is an individual who wants something I will not give them. I was talking to my friend Ann about this, trying to understand why that would be so incredibly provocative. It is, she said, because you are so free.

I like that. Perhaps in the eyes of some a character flaw but one I can live with.

And goddamn, I intend to live. So suck it cancer. I’ve got other plans.

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Revolving doors

Posted on November 13, 2020 | 9 comments

On Monday I start my fifth first in human trial. It is, at best, a crapshoot.

Talk about not knowing if you are coming or going. Realistically, I am in a tough spot. Stability just doesn’t cut it these days—I need response.

If wishes were horses and if my ever growing to do list were enough to keep me here…But that’s not how this works.

It is time to get my will finished, even as I start a new painting. Feet in both worlds, now and nevermore. I am not ready. But I also understand that death is not open to negotiation.

The trick is keeping hope alive. And hoping my body follows suit.

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Am I ok with this?

Posted on March 21, 2020 | 7 comments

No.

I learned a long time ago that no one was going to be a more formidable advocate for me than me. Simply because–plainly stated–my life matters more to me than it does to anyone else.

No apologies. Self survival is a primal instinct.

However, I never thought I would get to a place where this was actually called into question.

Now, however, with the coronavirus ravaging the planet, I am forced to argue for my right to live.

Yes. Obviously much of this is out of our individual control but I would like to think I at least have a fighting chance.

That I, an individual who has beaten the odds for fifteen years now, should be given a shot at continuing survival.

It is incredibly demoralizing to understand that should I be unfortunate enough to contract coronavirus (despite my every effort to isolate) I might be denied supportive treatment. Based simply on my age and comorbidity (stage IV lung cancer).

It bites to know that those young people who were cavalier enough (selfish?) to crowd the beaches of Florida during spring break would be an instant priority. That I, who have fought like hell to stay alive for one and a half decades now, would be considered a non–priority.

Seriously? How is this going to serve society in the long term? I thought death panels were a thing of rumor, not reality?

My best hope of survival is to make certain I do not contract COVID-19. However, I understand better than most that this is not something I can control. Shit happens.

However, should that particular shit happen to me, I will not go quietly. I do not approve of a system or society that bases triage on chances of survival. Honestly, first come, first serve is fairer, in so much as it does not have inherent bias. That bias is bad for all as it is potentially nonrecoverable. I would argue that as bad as it is for me, it is also something that is going to be difficult to reconcile for those who have to make the call.

Don’t give up on us. Just don’t.

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Death

Posted on February 3, 2020 | 19 comments

I think it is important to put this out there. I am not afraid.

Nope. When I say death is my familiar it is not merely a throwaway statement. Seriously. Death has been my persistent companion for so very long now that it has lost the ability to intimidate.

I have thought about death a lot. Not because I’m morbid but rather because I am terminal. And I have come to the conclusion that it is nothing to be feared.

Not long ago I spent several hours with a close friend who was on their deathbed. And she was afraid, very afraid. This had to do in part with the fact that she was way too fucking young to be confronting the end of it all, and there is no way she could have been prepared.

However, I did my best to comfort her. Dying is not easy, I said, but death is. And then I told my friend that in my work on death I had come to the conclusion that it is a big giant release—and—contrary to what we are often led to believe—an ecstatic experience. The French refer to orgasm as ‘la petit mort’ or the little death. This is not, I think, a coincidence.

Death is a kindness. A place beyond pain and suffering. It is a letting go into that beautiful scrum of all that has lived before.

Dying is difficult because it is a separation from all we have known. In this respect, I am no different than most. Given a choice, I am not ready to die. In fact, a consummate late bloomer, I feel like I’m just getting the hang of this particular lifetime and I would prefer to have some more time to hone my craft.

I still have a lot of work to do when it comes to getting my physical affairs in order. I’d like to spend more time with friends and family, see more of the world, make more art and more love too 🙂

However, spiritually, I am ready. I have done the hard work around my own mortality. And because my love for life is truly unconditional, I am not married to outcomes. It’s all good, no matter how this ends.

Because it will end. For all of us. This, our life on earth. After that? Who knows. As an atheist, I like to think my energy will just get stirred back into the whole of the universe. You may have another vision–equally comforting.

But know this. I don’t think we need to be afraid. Our death is harder for those left behind–the people who grieve. And even then, I have learned that when someone I love dies, they continue to live on in my heart and my head. I just can’t call them up to go to lunch. But I sure as hell can go on loving them.

That’s the thing. Our flesh is not eternal, but love, as an intangible, can be.

Live now. But leave with love.

xo

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Hold me

Posted on January 4, 2020 | 25 comments

I am at a tough place. Physically, financially, emotionally.

Moving again combined with chemotherapy plus lorlatinib has been more difficult than I imagined. I am exhausted and raw–figuratively and literally.

In December my five years of alimony came to an end. The previously draconian divorce laws in NH have been revised, and were I to be divorced now, I would have received alimony for up to one half the length of my marriage. I asked for an extension which was summarily denied (no surprise). I don’t qualify for disability (not enough work credits–being a stay at home mom bit me in the ass–hard) so I am going to have to have to rely on my retirement fund. It is all very stressful and yet small potatoes compared to my health issues.

Breathing. So simple and yet not. Thus far no indication that chemotherapy is making a positive difference. Which of course makes the abundant side effects less tolerable as well. And then there is the mind fuck of pushing ahead with the belief that this is all for a reason while also understanding that in fact I may just be making myself sicker with no resultant benefit.

On Monday I was given the option of forgoing chemo. My response was ‘hit me.’ I need to believe that I am accomplishing something.

There is also the reality that I am essentially going this alone. That the dog still needs to be walked and I need to eat, neither of which is going to happen magically.

I have no doubt I shall get through this. It is what I do. But it also occurred to me (again) today that perhaps the worst part of being alone is having no one at my side. That human touch and warmth would do far more toward making me feel whole than a meal or a walk for my dog (things I can do myself).

Well. I am not one to let conventionality stand in the way. If you’re a close friend of mine and within driving distance, don’t be surprised if I hit you up for a sleepover. Nothing fancy. Not sexual.

Just hold me.

xo

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Rattle and roll

Posted on December 16, 2019 | 7 comments

I was exhausted last night. Rightly so, I imagine.

As I lay in bed, I could feel the powerful impact of two different cytotoxic agents on all the various bits of me. Havoc was being wreaked, like some marauder in the garden.

I went with this garden imagery, the cancer in my lungs a persistent and deeply rooted weed. And I pictured it being torn asunder, plucked from the substrate of my flesh, shaken violently, bent, torn, limp, lifeless. Every last cell of it.

When I awakened this morning the sound in my lungs had changed in timbre. The crackle of leather had been replaced with something akin to a broken tea cup. Very fine bone china, rattling around.

Hmmm, I thought. This is an improvement. What was hidebound now feels looser, dryer, easier to dislodge.

Onward.

xo

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Another dawn, another day

Posted on October 16, 2019 | 7 comments

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.

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The struggle is real

Posted on October 15, 2019 | 19 comments

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.

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