Tag Archives: terminal cancer

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.