Tag Archives: terminal cancer

Am I ok with this?

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.

Death

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

Hold me

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

Rattle and roll

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

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