I roll the window down

And then begin to breathe in

The darkest country road

And the strong scent of evergreen

From the passenger seat as

You are driving me home

Then looking upwards

I strain my eyes and try

To tell the difference between

Shooting stars and satellites

From the passenger seat as

You are driving me home

“Do they collide?” I ask

And you smile

With my feet on the dash

The world doesn’t matter

When you feel embarrassed

Then I’ll be your pride

If you need directions

Then I’ll be the guide

For all time

For all time

Death Cab For Cutie, “The Passenger Seat”

“It’s getting hard to stay awake” I mutter to my husband.

It’s a phrase that I’ve been muttering far too often over the past two weeks. And in fact it is, at times, becoming a very difficult thing to do. I live in this body, where cancer mingles with chemotherapy, and chemotherapy mingles with cancer, and pain management options- namely opioids, mingle back and forth with both. At any given moment, who is to say whether my pain or my emotional shifts or my sleepiness is a result of cancer, chemo, pain management, hormonal shifts, a little of all four….? Causes and effects blur together inside me and puppet me into someone who functions; but not quite like she used to, and who maybe has to just accept that fact. For less pain? For longer life. For… where was I again?

The woman who has always taken pride in being the driver in my own life slides over to the passenger’s seat for a while. The woman who wins at least three of every four WORDSWITHFRIENDS just had a four-game losing streak. I stay on the margins of those Facebook group discussions about trials and/or possible new treatment options. I KNOW that I cannot stay on the margins for too long, but I kind of… don’t want to leave?

I can smell those dark evergreens. I can make out the gleam of the shiny objects in the sky. I miss the days of limited awareness. Of the magic of musky smells. Of simply knowing that if I just close my eyes that someone else will take care of me. They will make sure that I make it to the destination and back. Just as I was an infant, let the universe decide whether my survival is still worth it or not. I struggle with the balance between acceptance and giving up. I let go expectations of survival, but need to keep my will to survive. How messed up is THAT?

For housekeeping purposes, I was offered a chance to stay in my current trial for up to two more treatments and another scan. I wanted to stay on the trial so very badly. I was looking for reasons to stay on the trial, but honestly could not find any. All of my tumor markers have been on a roller-coaster style projection straight up. And I’ve had progression in several areas of my peritoneum, with tumors growing rapidly in several spots. This progression has been the cause of my sometimes intense pain. Pain which I am still trying to effectively cover with pain meds. Pain meds that combine with cancer to make me want to sleep and feel the breeze outside of the passenger’s seat window. There are also ascites, which are contributing to the pain and are generally seen as bad prognostic signs and decrease your chances of getting into some trials.

So I withdrew from the trial. And I believe that it was the correct proactive action. Some good news is that there is some evidence to support that a return to prior chemotherapy might have a better chance of success after finishing a course of immunotherapy treatment (my trial), even if the immunotherapy itself did not work. So I am re-attempting my first treatment (FOLFOX) and adding in the AVASTIN that I took with my second chemo treatment (FOLFIRI). I am hoping for a knockout. Because I want this to work. I NEED THIS TO WORK. So if you have any good thoughts, prayers, etc. worth donating, now is the time that I really feel like I need them to come my way.

My first strong chemo after my cancer progression was REALLY, REALLY rough. I was in pretty agonizing pain for several hours straight, and not able to sit still through pretty much the entire infusion. And then on top of that, I was so nauseous that I had to vomit up everything into the chemo bay trash can and just keep going. Well, the first puke was to literally to gut myself of all evidence of food in my body and the second was really more of an extended, tortuous dry heave. Did I mention that we are working on better balancing my pain regimen? I spoke to my oncologist and now have permission to front-load my pain medications on chemo day and then to still be able to take them as needed for the rest of the day. It turns out that there really isn’t a merit badge given to people with cancer who suffer the most.

So here is one of the cruelest parts of cancer that they don’t tell you about. Good news begets good news. Bad news begets bad. It seems like a never-ending list of options when you begin walking down the “metastatic cancer” board game with tiles after tiles lined up. But progression to a third metastatic location, diverts you to a shorter path. Another bad scan, they take a tile away. Another bad scan, they take a tile away. And then suddenly you are already three months shy of your two-year cancerversary and there are only three-four game tiles remaining between yourself and the gravestone. Those tiles are: 1) Re-attempt prior treatment, 2) Stivarga (third line chemo), 3) Lonsurf (another third line chemo, but it is a stretch that I will even stick around long enough to be healthy enough to try it, and 4) Go to hospice. Do not pass go. Do not collect $200.

A GOOD scan at my next scan time, might make it more likely that I will see Game Tile #3. It might even open up a tile for another clinical trial. Or a tile which would allow me to apply to use a drug on a compassionate use basis (okay, I admit that I may look into this even if my scan isn’t good). A BAD scan might kick out tile #3, or compassionate use, or if REALLY bad send me straight to hospice. This is the Game. The Game that I need to wake myself up and pay attention to.

I am battered, but still hanging in there. The last couple of days have been better from both a pain management and energy/awareness. I almost feel… optimistic? Strong chemo worked very well for me in the beginning of all of this. Until it didn’t work for me any longer. Let it work again. Let those doors start to open and let the tiles begin to come out.

I already have a boxer’s mouth. It is bruised, battered and rough on the inside from accumulated mouth sores. It is filled with cotton from dry mouth, inspiring insatiable thirst. What better time could there possibly be to scoot back to the drivers’ seat once more? To adorn myself with some glittery shorts and trendy sports bra and step into the ring to do battle. Throw all of the metaphors at me. I am ready.

There is time enough in the future to lie back down again. And to marvel at the beauty of the stars that are colliding above my head.

Let us remember to love,

I you

and you me,

and we will rise above ourselves

and Time

Know us for what we are—

miracles that build fires from timbers in winter.

Let us.

Francis Daulerio, “Post Script,” published in “If and When We Wake”, 2015

You’ll live to dance another day,

It’s just now you’ll have to dance,

for the two of us,

So stop looking so damn depressed

And sing with all your heart that the Queen is dead”

Frank Turner, “Long Live the Queen”

I toured the cemetery in a Death Cab for Cutie t-shirt and a set of pigtail braids.

No, not the area with the tall headstones cloistered together. I toured the other one, in the “new” area which looked more like a field in a vacant lot. It’s easy to miss the sign that identifies what this ground is used for. In the center, a community scattering ground for cremated ashes with one semi-large monument in the middle. The writing begins with “In loving memory…” and currently carries a collection of maybe ten names. At first, that would seem to be the only thing here, but a walk through the grassy, weeded grounds reveal perhaps a dozen more stones and rocks spaced out; each commemorating the life of a loved one who has died in the past two years.

This area is simple and quiet, with an understated, almost semi-private feel. It reinforces the feeling that the space is “a little secret” between those in the ground and those who are seeking them out. I imagine the few who reside here whispering softly underfoot of visitors. I wander and glance at the stones of my future neighbors. A thirty- eight year old man, also gone before his time; A seventy year old beloved “wife, mother, and grandmother…”

The younger man’s stone has rocks and shells around it, that no doubt mean(t?) something to him or to his family. I think about my son Jack, and how much he would love to decorate the area around my name stone with some shells and rocks he collected. I decide that I like my future company, and my fellow fertilizers for this field.

The “new” area is reserved for people that have decided that they wish to have a natural burial. One that is free of formaldehyde and other environmentally harming chemicals. One that substitutes a heavy, closed casket for a quiet shroud. The idea is to let us decompose. To become food for worms, and to allow us to help grow these grasses and weeds that lie above us.

It wasn’t until I learned about the idea of a “natural burial,” as a viable option that I found tranquility of mind with today’s modern post death practices. I mean, they are really quite disturbing when you think about them. I don’t want someone manipulating my body and pumping it full of chemicals in order to set it up for a “pretty” viewing. I want people to remember me as the “me” they knew me as when I alive. No last images of Heather on display like some wax museum imposter overdone version of her former self are necessary.

The other major alternative (cremation) is no less disarming to me. This is not like the cremation ceremony of old, where I am nobly placed on a boat, then alighted with a fire arrow on my way out to sea. Nope! Today’s cremation is literally just a slapping of my naked corpse and toe tag on a cold metal conveyer and rolled into an inferno. Product in, product out, all in another day’s work. No thank you. Uh uh. Not at all.

But a natural burial? This is a simplicity I will take. Just clean me, cover me in a shroud and give me a respectful burial. Please place a small stone to mark the location and to remember me by, and then give me my literal opportunity to “push up daisies.” I will take that. Humans were meant to decompose, just like all of the other animals. And just like them, we were meant to give our nutrients back to the earth, instead of poisoning it further with chemicals.

I can picture my family visiting me here in this understated lot, perhaps near the shade. I can see my daughter planting flowers. This lot is just a block and a turn away from downtown Yellow Springs, the hippie capital of southwest Ohio. I wonder if, when they visit, they will stop by the iconic Ha-ha pizza or some other local establishment to help support it, perhaps while sharing some memories of me.

These visions of the future haven’t always been so peaceful. For the longest time, they filled me only with a deep, deep sorrow. Resentment over having to even make these plans in my early forties. Mourning over the irreplaceable loss of not getting to stay here with my family. I avoided the song, “Long Live the Queen” for the longest time, because I just couldn’t process this tragedy in a celebratory manor. I wasn’t ready yet. But over the past year or so, I have been doing the hard work. The inside work. And today, I allow the visions to come.

In my darkest moments (as exemplified in my last post, “Losing Exits”) I question whether my inner work has been successful. But in moments like yesterday and today, I am able to know that it has. Staring directly into the eyes of lives lived beyond yourself takes a level of awareness that few are forced to grasp until they are very old. Taking a walk past your future consciousnessness and finding peace there, instead of anguish, is quite a thing indeed.

What I have found is that not only am I able to do this now. I need to do it. So that my husband knows what my wishes are; and so that he does not get stuck having to make these decisions at a later time. I need to take care of this now, so that when I pass away later he needs only to pick up the phone and call the funeral home to take care of everything else.

Coming into this “planning and finalizing” phase, I fully expected to be weirded out by it all. Which burial plot should be mine? What type of shroud should I wear? How will my body be handled? Weighty decisions for a lady in pigtail braids and a concert t-shirt. But the truth is that it wasn’t really strange to me at all. It turns out that I was far more ready to do this than I had given myself credit for. It’s actually comforting to know exactly what will happen- logistically- after I pass, and exactly where I will rest out my bones.

This realization has opened the door and allowed me to finally have some of those other big discussions, which I was previously unable to handle. Discussions of what my wishes are for my family after I am gone. It’s not lost on me that there will likely be 40 years of life remaining for my husband after I pass. Do we plan for him to be interred next to me? What if he finds somebody else?

While I won’t disclose everything spoken of, I did let him know that I am okay with that (moving on) if some day he chooses to. We both agreed that he wants to continue to raise our children as we would have raised them together, and I trust that he will do that with every ounce of my being. But there is more to it than just that. I am asking him to not take those moments for granted. I want him to see them for me too. I want him to celebrate the milestones with me. I want him to dance for one more of us.

So he finally told me what he wanted to do with the payout from my life insurance policy. The term policy which I purchased so inexpensively several years ago, never imagining then that we’d actually ever use it. He’s going to buy that property by or on a lake. The one that WE had always wanted to buy together. The house that WE would bring our children on vacation to. The house that our grandchildren would happily come visit us at when we got older.

No sight fills me with joy more than the sight of my children- my family- having fun. And I can clearly see them there. Spending time with each other and creating memories with each other. Memories of love, and memories of laughter. I see future grandchildren dancing around and filling Abe’s heart and home with love as he grows older. Maybe a tree can be planted there in my memory that can grow older too.

It was OUR dream, but now it must be theirs. At one point, I would have focused on the dejection of being cut out of that dream. But today no other thought could fill me with a greater harmony or pleasure. It will not just be a gathering place for them. It can be family legacy. A BETTER legacy than the kind passed to me. A legacy that I created. And as these years spin into decades, you will also find me spinning, as the dance is carried forward for just one more of us.

I’m out of my mind

Think you can wait?

I’m way off the line

Think you can wait?

We’ve been running a sleepless run
Been away from the baby way too long
We’ve been holding a good night gun
We’ve been losing our exits one by one.

I’ll try
I’ll try
But I couldn’t be better
All I have is loss

The National, “Think You Can Wait’

Damn it. And damn me- for always being so God-damned human all of the time.

A million times, I have told myself that I have accepted what is happening to me, and a million times I believe it is true. But then there are days, like today- scan result days, that lay out for me clearly that this trial is not working and everything has progressed. Days when they take down the harsh, fake plastic curtain of the process of medical care. And behind it is that stark image of the freight train at the end of this tunnel that is barreling toward me.

My days, these days are lost in the mix and the joy of home life and children and vacations that I throw on the calendar that I know full well that I likely won’t make it to, but which still give me a goal that makes me walk around with my brain not already half in the grave.

My days, these days are lost in the medications that I take like white paint over black, creating fuzziness and which dull the increasingly sharp pain penetrating outward from deep inside.

But then there are days like today, where I forget to pack my long-acting morphine pill and the physical pain grinds through and I realize that my abdomen and back feel like the aftermath of a cheese grater taken to them and all that remains are the tender, raw, abused fleshy parts

Ah, infuriating days like today where I discover that there still is a crevice in my brain that entertains fantasies about a secret key that will unlock the shackles and let me out of this dark, isolating echo chamber, staring at that train. This place where I must be so terribly, terribly alone.

Where I sit and I let the hours pass between one city and another and wonder: Which anguish would I prefer to be free of right now? The emotional? Or the physical?

I decide that physical wins. I cannot move forward with my days being a choice between a sharp pain that makes me irritable or a dulled pain that is livable, but which makes ME dull as well. Neither a day spent restless, nor a day spent trying to stay awake is really a will sufficiently qualify as a “life” that I want to live right now.

Arriving home, I move to apply salve on the physical; belatedly taking the lost dose of morphine and then pour a bath for myself. It soothes and settles me to a still enough water; space to allow the emotional to bubble up from beneath to break on its surface. I make a half-hearted attempt at distraction only to instead find myself shaky-crying over “on this day” reminders on Facebook. Reminders of a life that I led years ago which is now gone forever.

These leaky things come out of my facial orifices and I realize how long it’s been since I just let them loose. I built my dry earth village of acceptance; but I forgot that I must add water to that dirt to make it real. I must acknowlege my emotions first, before I let them go to mold the dirt into clay. To create something more permanent that cannot soo easily blow away. So I get out my phone and write. And I let the rain fall a little bit longer.

At home, it has just rained too. Petrichor. The smell of release, change and of new beginnings.

I get no rebirth. But I do get another day of home life, and children, and unrealistically hopeful vacations to throw on the calendar.

And some next steps to decide on tomorrow.

Looking towards the future, we were begging for the past

Well, we knew we had the good things, but those just never seemed to last

Oh, please just last.

Everyone’s unhappy, everyone’s ashamed

Well we all just got caught looking at somebody else’s page

Well, nothing ever went quite exactly as we planned

Our ideas held no water but we used them like a dam

Oh, and I know this of myself, I’d assume as much for other people

Oh, and I know this of myself, we’ve listed more to life’s end gong

Than the sound of life’s sweet bells.

Was it ever worth it, was there all that much to gain?

Well we knew we’d missed the boat, and we’d already missed the plane

We didn’t read the invite, we just danced at our own wake

All our favorites were playing so we could shake, shake, shake, shake shake

Tiny curtains opened, we heard the tiny claps of little hands

A tiny man would tell a little joke and get a tiny laugh from all the folks

Sitting, drifting around in bubbles, and thinking it was us that carried them

When we finally got it figured out, that we had truly missed the boat

Oh, and we carried it off so well, as if we’d got a new position

Oh, and we owned all the tools ourselves, but not the skills to build a shelf with

Oh, what useless tools, ourselves

Modest Mouse, “Missed the Boat”

Modest Mouse’s Isaac Brock has probably written more than forty songs about how and why people are assholes. That made choosing just one of them to lead off today’s blog very difficult. I ultimately settled on “Missed the Boat,” because just about every line in it is a winner (although I did omit a few for brevity). Metaphorically speaking, if you are someone who has “missed the boat,” that means that you have missed out on opportunity- or perhaps also the point. This is a song about human beings who “miss the boat” on life, but don’t realize it until they are staring directly at the end of their journey.

We (humans) are given this great gift, and we think that we know it’s value, but we don’t- not really. We don’t know it, because we’ve never had to lose it, or even face losing it. And when we are young, we don’t even really know at first what to do with it. So, we all mutually agree to more or less all follow the same loose blueprint (look at someone else’s page). We focus on the future, and get caught up in the past and miss enjoying the present altogether. Afterwards, we wonder out loud how quickly those special moments disappear. “Oh please, just last.” Or, as Frost puts it “Nothing gold can stay.”

But that’s okay. This is America! All we have to do is produce! Work hard and build tall towers so that everyone can see your success. The American dream. Along the way, we are told to keep our chin up and project happiness and what we envision to be success even when they aren’t really there. We plaster idealized pictures of ourselves on Facebook and obsess over the perfect selfie. Instead of being vulnerable, and using that vulnerability as a means of learning, growing and connecting with others we “fake til we make it”. We project confidence and that we know all of the answers because doing this nets rewards and helps us to ignore that gnawing feeling deep inside that we don’t really even have a clue.

When we have good things, we drift along on the bubbles of our fortune, pretending that every lift is the product of our work and talents only. We forget that almost everything is supported in large part by privilege, luck, our connections and the efforts of those around us. One seed gets planted in a garden and lauds his hard work for becoming a flower, then assumes that the seed that was thrown on a pile of rocks didn’t grow because it was too lazy.

We wrap all of our time and efforts around ceremony, formality, pettiness, titles and promotions, shallow grievances and even shallower conversations, when we should instead have focusing on honesty, character, real connections and the big conversations of life.

We, of course, are clueless that we have wasted our lives on these petty things. Until suddently we reach the end, face our own mortality, and realize that we have truly “missed the boat.”

We had the tools to build a deep, rewarding life, but never developed the correct set of skills the skills to make that happen.

Or, as I have stated often in these blogs (borrowed from another blogger): “Life is wasted on the living”.

Speaking for myself, I can say that I often rationally knew that I was focusing on and getting wrapped up in the wrong things, but I didn’t really feel it until the full impact of my diagnosis sunk into me. We think we know that life is precious. But we don’t. Not really. Not as long as it remains some abstract event that will occur at some time in the future. I tried meditating, writing in my journal, and therapy, as if they were “to-do” list for happiness and fulfillment. Changes were happening, but very slowly. What it really took was a doctor telling me that I was going to die.

So, why am I focusing in on all of this today? Because I am starting to get angry again. Angry at assholes. It seems that they are multiplying exponentially these days. Or more likely they have always existed. The difference is thay they have now been validated. They’ve been given permission by the head asshole and their echo chamber of fools to finally put their lack of empathy for anyone else in full display, instead of hiding it behind closed doors like the old days.

I try to distance myself from mentally and emotionally getting too wrapped up in politics and in people’s resulting behavior. But it gets harder and harder every day. Ignorant people have now fully melded their entire identities into defending the narcissist at the top. Because if he is wrong, they have to then admit that they have been wrong as well. And so now they deny the severity of a global pandemic in the name of defending the cult-leader in charge. Humanity has always done this. A rebranding of reality in order to justify reprehensible actions. If the pandemic is declared “fake” or overblown, selfish people can feel justified in not doing anything to try to curb it or to protect our fellow citizens. They can cuss and yell at people wearing masks and try to claim that violent, abhorrent and rude behavior is somehow now “defending liberty”.

And along the way, they are treating life itself, precious life, like it is only so much trash. “We all die someday” they throw off, casually. I think that I’ve mentioned before how much I hate this phrase. I hate it because it is tossed out with such stupidity and ignorance. They say it confidently even because the actual idea of dying is still just some abstract idea to them. Like unicorns. They have never had to sit down and face that fear. If they did, they wouldn’t act as if dying were less important than money. Or convenience.

And the tens of thousands of pandemic deaths in this country alone? Those might as well be unicorns too. They haven’t stared at fear in in the eyes of their loved ones. They haven’t had to say goodbye to their family one last time before being sedated for a ventilator. Death is no more real to them than a game piece in a political argument.

“Let’s face it. Most people who are dying of this are on their last legs anyway.” Thanks Bill O’Reilly. Except that what you just said is not true. Someone can be immune-compromised and not be on their last legs. And even people with stage 4 cancer can still have years left. The last years of their lives with their families are important to them. They are important to older people too. Anyone can die of this disease. Younger people can die of this disease. And those who don’t die may still be left with permanent debilitating conditions. All of these people are still hypothetical “others” to you. All of these people love and are loved.

We used to unify in times of crisis in order to protect our most vulnerable citizens. Now we actively act to injure them. As if the very idea that they exist makes you feel “attacked” for being the asshole that you are. And this is done in the name of “liberty”. If God is love, he is absent among you. He is among the sick, vulnerable and elderly.

Of course we find that conservative, religious people are at the forefront. Gathering in groups, and grabbing their guns. They are protesting social distancing “laws” which basically only say, “don’t gather in large groups, infringe on others’ space, or throw parties.” (i.e. “don’t be a dick”) But their protest signs have the gall to claim that these directives are congruent to slavery or to being placed in concentration camps. If you want to work, you are free to work. You might have to take a job with long hours and low pay. They are jobs held by the same people that you are treating like crap for politely asking you to wear a mask or social distance for the health and safety of others.

I want to ask these people if they will volunteer to sacrifice their own lives for the economy. An economy that they would never see, hear or consume in. Will they lay down their lives for the sake of someone else’s convenience? Or so that someone else can go out and do all of the fun things again. I want to be able to ask these things. Not because I want them to die- but because these people are strangers to empathy. They won’t care about someone else, so it has to become real to them. Take the gun that they are cavalierly toting around and point it in their direction and all of the chants and the protests will fall silent.

I fear that all of this is only going to get much worse before it gets better. I fear most of all for my kids. I worry for the world that they are going to grow up in. My girls, especially, are already outspoken. They are already bold and willing to speak their minds to point out racism, sexism, homophobic and other behavior. They aren’t afraid to tell people that they are being assholes. What will happen to them the first time that someone decides to seriously strike them back? They will have to learn in a painful way what I have been trying to tell them all along. That the world is not fair, and that speaking out will usually have a price- and possibly a high one. People really don’t like it when you tell them they are behaving like an asshole. I am both very proud of and afraid for them.

I teach them to be grateful for what they have and to expect nothing. I tell them to what is right even when nobody is looking. We tell them to go where their purposes and talents lead them to, but not to expect the payoff of success in return. The world isn’t fair. There will always be someone with less fortune than you. Appreciate the privileges you have that someone else doesn’t.

But words have less power than actions. So I need to model that for them. I need to stop be angry and frustrated at these assholes. Getting angry and worrying about things that I cannot control is part of the problem. It’s like flailing around in deep water when you don’t know how to swim. All it does is waste energy. The only sane option is floating and letting the current take you towards something to grab onto. I need to model that for them. So that they can live life and not waste it. So that they can focus on all of the beauty and love that will always be present somewhere instead.

So that they can catch the boat, steer the boat, and live a better purpose through the the very turbulent waters I see coming ahead.

Graceless
Is there a powder to erase this?
Is it dissolvable and tasteless?
You can’t imagine how I hate this
Graceless

I’m trying, but I’m graceless
Don’t have the sunny side to face this
I am invisible and weightless
You can’t imagine how I hate this
Graceless

I’m trying, but I’ve gone
Through the glass again
Just come and find me
God loves everybody, don’t remind me
I took the medicine when I went missing
Just let me hear your voice, just let me listen

All of my thoughts of you
Bullets through rotten fruit
Come apart at the seams
Now I know what dying means

I am not my rosy self
Left my roses on my shelf
Take the wild ones, they’re my favorites
It’s the side effects that save us

Grace
Put the flowers you find in a vase
If you’re dead in the mind it will brighten the place
Don’t let them die on the vine, it’s a waste
Grace

There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows without you

– The National, “Graceless”

It’s 12:45 on a Saturday morning, and I can’t sleep. I can’t sleep because I am in pain. The cramping in my lower abdomen is a cake walk compared to the constant sharp stabbing in my lower back. Usually Oxycodone can come to my rescue in times like these, if you give it enough time. But it’s quiet, I’m alone, and the relief I need can’t be lured. I don’t know what it is about baths, but they take the edge off. And what I need more than anything right now is dullness. So I turn on a faucet, gingerly step in, and begin to write.

I’ve grown a whole new appreciation for hygge, which I guess is the danish word for a sense of calm and coziness. I find it when I sit in the recliner with a heating pad, drinking my coffee, and listening to the sound of the household around me. I feel it here, surrounded by liquid warmth in the bath. I feel it when I snuggle up with my husband or one of the kids downstairs. We might watch a tv show, or I might watch them play a video game.

There is nothing productive about it whatsoever. Which is, I suppose, why I have experienced “hygge” so little in my life- and especially since I had kids. My inner voice tells me- “Isn’t there something productive that I SHOULD be doing?” “Aren’t I just being lazy?” Nah, I was just (gasp!) trying to enjoy life. Instead, I wasted every second I allowed myself to “splurge” feeling guilty.

These days, hygge comprises the majority of my time. Because pain has been holding me back from being my formerly “productive” self. And I don’t care. I care very little about just about anything small that threatens to take away my joy. My “high highs” and my “low lows” have both been difficult to come by these days.

This is the part where I have climbed through the jagged, broken glass. I am still bleeding and forming new scars, but can now view every new thing that comes with a sort of numb sardonic or dark humor. I imagine that this is just another phase of my grieving process, but for now, I linger; enjoying the break from the emotional agony- even as the physical pain ramps right back up again.

For example, we still haven’t determined the root cause of this latest round of pain, which sent me to the ER two weeks ago. I went through a guantlet of tests and appointments this week to figure it out. After my transvaginal ultrasound, I had a follow-up with the doctor who ordered it and he described it’s inconclusive results this way: “When you hear hooves stomping, you usually think of horses, but occasionally it’s a zebra.” Apparently, I’m a zebra. So, the results of this week’s tests are… more tests!

The results of the ultrasound can be summarized thusly: 1) Uterus: everything looks normal except for the right corner where the lining is thicker. This is usually a sign of a hidden polyp, but because I’m a zebra I get to schedule outpatient surgery for a procedure that involves filling my uterus with water and doing a D&C to confirm exactly. 2) My softball-sized cyst in my lower left abdomen has a small, solid center. The (insert robot voice) IOTA ADNEX model says that this has only about a 20% chance of being malignant.

Another possible theory is that this solid mass is leftover ovarian tissue that may now be acting like an ovary and spreading feminine hormones around and nullifying my menopause- a condition called Ovarian Remnant Syndrome. It doesn’t usually present this way… but again, I’m a zebra and it matches my pain and bleeding symptoms perfectly. So I gave blood for another Follicle Stimulating Hormone (FSH) test to sort that out. One of these things is causing my intense pain and bleeding. Which will it be? Stay tuned for the next episode of Zebra Life!

The sardonic side of me wishes desperately that I were a unicorn instead. If I were a unicorn, I could just shake my shiny ass and make all of this just disappear.

This afternoon, I got a ping on my email: “Your test results are ready!” I log in to Mychart to discover that they are the results for my Thyroid Stimulating Hormone (TSH) test. In case you were wondering, no- this isn’t the test that was supposed to be ordered. This means that yes- they conducted the wrong test. On the plus side, I am now aware that my Thyroid numbers are extremely low: 0.029 on a scale where the “normal” range begins at the lower limit of 0.4. It turns out that I have hyperthroidism. Great. Now if only I could get the results of the FSH level test that was never conducted…

Thanks to a little bit of online research, I was able to determine that my newly discovered thyroid disorder is most likely due to my current immunotherapy trial. Apparently, thyroid issues occur in about 15% of patients, with the majority suffering from hypothyroidism, and maybe 5% of that group having hyperthyroidism. The zebra gallops again.

I guess that I have to have a bit of a dark sense of humor, when you consider that the very fact that I am dying of colon cancer at 43 makes me a zebra all by itself. When I am still suffering from lady part maladies after having gone into surgery with a chance of having them removed twice now? When surgeons at the Cleveland Clinic miss a mass on my ovary as big as the ovary itself? When I am one of the 15% of Colon Cancer patients who gets peritoneal mets, and that fact alone makes all of my doctors give up on a chance for a cure. When I burn through both first line chemo treatments available to me within 18 months…

I know that I am looking over all of this with a negativity bias. I know that there are some who get diagnosed at a more advanced stage and didn’t get as much time or as much healthy time as I have had after diagnosis. I know that there is always someone who has it worse. I mourn for the people I meet online who don’t have the social support that I have. I mourn for those who have children younger than mine, who might not even be old enough to have memories of mommy before she died.

All of our lives are ruled in part by luck. We are dealt a set of cards, and then are left to play those cards as best as we can. I feel like I’ve played my cards better than some, but worse than others. Overall, I’d like to believe that I at least tried to play the game the best way that I personally knew how to. I made some mistakes. I learned from them. I played by my sense of values and purpose and I reaped a few penalties for that along the way.

And so here I am, at the end, with nothing else to do but to laugh at the world and to laugh at myself. Society, to me, looks like a bunch of little people giving away their happiness, in small fistfulls, every day. Husbands and wives pick at each other because they are restless and need to invent a conflict or reason they were wronged. Parents hover over their kids to get a perfect score, or buddy up with coaches and teachers to try to give them an advantage; all along the way sending their kids the message that “I love you if….”

It looks like alcoholics wasting their precious lives drinking instead of fixing their problems, as if the life they have been given is so much trash, and they can just fix it some other year or decade in the future. It looks like politicians and people that no longer care about investing in the future. Who have normalized denying science and truth in exchange for short-term power and ego. It looks like people who have allowed themselves to be convinced that happiness and health are tied to consumerism, instead of connection. And it looks like people who have sold their empathy and any any false pretense of living according to the tenants of their religion for the price of affiliation with their con man (anti-christ?) leader and never for having to admit that he and they are wrong.

Magical thinking and conspiracy theories are enjoying a heyday right now. Cancer patients, as a population, have always been vulnerable to this. People who think that something they read on the internet will cure their cancer. “Eat only grapes and lemons!” one survivor of a lesser stage cancer tells me as I wonder how reducing my only food intake to sugars could possibly save me.

I get it. I really do. Doctors, frankly, suck at giving out hope to terminal cancer patients. And where the medical profession fails, they seek it out elsewhere. Something that gives them a sense of autonomy and control. And there are more than enough charlatans out there to step in and fill that gap to make some money. Hell, even I’ve read a book or two on alyernative medicine myself… with a grain of salt. Saving the least dangerous or most plausible solutions for when I hit plan Z and no longer have anything left to lose.

Life paints itself like a meadow, but it’s filled with hidden traps and pitfalls. Get an unexpected illness, go bankrupt. Roll the dice to see whether you go back to the beginning to start over with a new set of rules, or whether you go straight to the cematary. Do not pass Go. Do not collect $200. It’s enough to make anyone want to reach for the hammer, break the glass, and walk straight through to some kind of clarity or escape.

Wisdom has taught me that there are only 2-3 keys to happiness in a chaotic, cruel world: 1) focus on what you CAN control; right here, in this moment and 2) release any and all expectations that the world is just or fair. All suffering and grief come from the loss of something that you feel is owed to you. Try to grow, but focus more on the joys you have now than you do on the things you hope to gain through your efforts. Nothing is guaranteed to come to you, because the world isn’t fair.

Finally, feel your emotions, and don’t let anybody tell you that they are wrong. Scream, shout, cry, laugh, sigh, and then walk, write, jump, dance, run, punch something, etc. Celebrate your fallabilty and your humanity, your love, and your anger and your sorrow; and then celebrate life. Because tomorrow is another day. Until someday it won’t be.

It’s 2:30 am now in the tub. And all of the water has gone cold. Technically, it’s already a new day for me as well. But my body needs sleep, and I’m hoping that the Oxycodone and bath have numbed the sharp pain enough to quietly escort me there. If I am lucky enough to wake, I will have another day myself. To kiss, to snuggle, to love, to laugh, and lots of other things that aren’t very productive….. and try to fix all of the typos and errors in this blog posting.

The ocean breathes salty, won’t you carry it in?

In your head, in your mouth, in your soul.

And maybe we’ll get lucky and we’ll both grow old.

Well I don’t know. I don’t know. I don’t know. I hope so.

Modest Mouse, “Ocean Breathes Salty”

One day when I was a kid, I remember watching some special on TV about Nostradamus. I wasn’t old enough to know better, so at the time it seemed like it was a documentary. The special lined up all of the prophecies in order to determine when the end of the world was going to arrive. And then, The Grand Finale: The Mayan Calendar. It calculated that the world was going to end in 2000! While that was still a good 15 years away, I did the math in my head. 22! I will only be 22! That’s way too soon for me to die! 42 was ancient to me then. But 22?! My life would only just be beginning.

And in fact, at 22 my life was just beginning. Within two months of my 22nd birthday, I had graduated college and gotten married. But 42 seemed to be a lot less ancient. Now that I am 42, I would give anything to make it to 62. Ask a 62-year-old if they’d like to see 82, and I’m sure that the answer would be a resounding “yes.” I guess that most of us always feel that there is more to do. More life to live. Of course, I know that I will not see either of those milestones, so I will have to settle for 42.

Very few people get to know how old they will be when they die. So I guess I get to be one of the select few. When my birthday rolled around last Saturday, Facebook lit up with well-wishes. Some people dropped off desserts and flowers and gifts. And I soaked it all in. And everyone mutually agreed to NOT bring up the obvious- that (barring some VERY good luck with treatment from here on out) my 42nd birthday will be my very last. My last birthday. What a thing to have to process. And yet, I went through the day with great aplomb. I got breakfast in bed from my middle child, played a board-game with the kids, watched a movie with my boy and even had an at-home spa day (also courtesy of my middle child). I spent the day with my family and enjoyed it. And by evening, I was tired. So I went to bed.

I always pictured that on my “last” birthday that I would have a huge party and celebrate- especially considering that it’s happening while I am still young. In the end, it ended up being just like any other day. I am different now. I don’t have the energy that I used to have. I’m different now, I don’t care as much about the symbology. I’m different.

For the past 2-3 months, I have felt more like a “cancer patient” than ever before. This coincides to when my last line of chemo stopped working. Physically, I have just grown so tired. Mentally, I have grown tired as well. As I mentioned in my last post, acceptance and apathy look quite a bit alike. In the past 2-3 weeks? I feel like more than just a cancer patient. I’m starting to feel like I’ve begun the slow process of dying.

Good news could potentially snap me back again, but it has been slim pickings lately, and acceptance is worn easier on the body than constant pain, fear and grief. My tumor markers on my trial treatment are still shooting up to unprecedented levels. I am having weird side effects. And, especially in this past two weeks, my pain has grown significantly.

After a week of unexplained abdominal cramping and bleeding, on my team’s direction, I went to the local ER. What they found was that my abdominal cyst and my liver tumors were slightly larger, so they sent me home. This week I had a follow-up with my gynaecological oncologist. He’s concerned about the bleeding. I should be past the post-menopausal bleeding phase by now. So next week, I have a trans-vaginal ultrasound and depending upon how that goes? A uterine biopsy. Add those to the liver biopsy and scheduled follow-up with my general practitioner, I will be traveling and going out for appointments every day next week. Look at all of the things that I get to go out and do during quarantine! I bet you are jealous…

Speaking of, my trip to the ER last weekend was not without exposure and suspense. I checked in right in front of a man who had apparently already been in the other local hospital system for COVID-19 after traveling back to Ohio from NYC. I didn’t catch the whole story, but for whatever reason he had been asymptomatic in quarantine and left or something, and now he was right behind me, feverish and hacking. He was wearing a mask, and I was wearing a mask, so all good right? And then a nurse asked me to take my mask off right there to stick a thermometer under my tongue. Something was definitely wrong with this process, but I only have the energy to fight so many things. I am officially one week past the incident with no COVID-related symptoms YET. I’m still hoping that that’s one medical catastrophe that I can avoid.

So… here I am. Forty-two years and six days old, with lots of medical warning signs going off all over my body. Lots of things could be changing already in the week or weeks ahead. And all that I have now is questions. Are my body aches and persistent fatigue because of the treatment or the cancer? Why do I now sleep ten hours or more a night? Do I have a uterine tumor, thus far undetected on any scans? Is my cancer on the verge of exploding everywhere because my current trial treatment isn’t working?

Do I have two months, six months or ten months left? Is that miracle that lets me stay around longer still hiding under a rock somewhere? Do I get to go out and enjoy the summer, or am I about to take a decline? Do I get to see my oldest daughter start high school? Do I get to vote in the next election? Do I get another Christmas with my family? Do I get to see 43? So many things out of my control. The only thing that I do know is that I have today. And it’s supposed to be a beautiful day. I think that I will take an Oxycodone and get myself outside…

“As life gets longer, awful feels softer
Well, it feels pretty soft to me
And if it takes shit to make bliss
Then I feel pretty blissfully”

– Modest Mouse, “The View”

I chose a cynical quote today to match my mood. I’ve always unintentionally equated acceptance with apathy and I guess that I am now seeing that borne out with my latest revelation. It’s 12pm, and I haven’t done a single thing today except roll myself up in a ball on the couch, emerging to occasionally surf the internet.

In order to understand how I got this way, we’ll have to rewind to yesterday morning. Mentally, I was already logging concern with two physical symptoms: My lower left abdominal pain increasing significantly, and some mentrual-like bleeding occurring many many months post menopause. And then I get the email- “Your test results are ready”. Since all of my other bloodwork had come in last week, I knew what this likely to be my tumor marker results.

I sat myself down at the and gave myself the talk. “They are likely to go up“. I called my husband up for emotional support while I opened them. And of course, I was right. Not only did my CA 19-9 jump 40 points, but my CEA, which has not gone above the normal limits since diagnosis, popped up as well. I processed. Bad things are afoot.

As a distraction, I went out walking with my kids through the trails near my house. It was a gorgeous, sunny day with the perfect temperatures. Going out into that perfect day was like getting served my favorite meal with a dead fly on top of it. There is no way you I going to be able to enjoy the meal, because I can’t get past the fly. It’s spoiled everything.

I suppose that the “dead fly” analogy could also be applied to what it is like to live life fully after being given a terminal diagnosis. Once hope for the future has been taken away, you can never really enjoy it again with full abandon. You can go on the coaster, but you can’t stick your hands in the air and just …let go. The guarantee of landing safely at the bottom has been taken away from you.

I arrived back home, happy to have spent some time outside with my kids, but exhausted- with my ever-present abdominal pain pulsing louder than ever. I head upstairs to use the restroom and out comes a sea of bright red. Now what?

The answer, like most things with cancer, is neither quick nor clear. Even though I’m suddenly bleeding bright red like I am 16 years old again, It’s not enough blood lost to cause health issues. Even though I am in pain, it isn’t enough that it can’t be managed with my current pain prescriptions. I am not running a fever. So this is not an emergency in cancer land. My body is screaming “hey stupid- something is wrong!” And I wait. I wait to talk to a doctor to get to a scan to find out what it is this time.

I send a message to the contact for my tri al medical team asking whether I can move my scans up, and then I am supposed to go back to life-as if-it-will-ever-be-normal until I travel for treatment on Monday.

I’ve done the emotional work. I didn’t grieve. I didn’t fall apart. I didn’t scream or wail or really even cry much. But I am still scared. Mostly because what is happening to me has the appearances of something immediately very bad.

My pain is on the left side of where my uterus is located, so if there is cancer there pressing on my uterus or perhaps puncturing through, it will either need to be immediately addressed or it will cause damage sooner, rather than later.

And so I think, like I have to think: Is this gonna be the thing?

Is this the thing that I don’t come back from? Is this the thing that shifts the weight balance and I have to hear the words, “There’s nothing we can do further, it’s time to consider hospice.”

It might be. It also might not be. But I have to wait. I have to wait to get a scan, whether that occurs 2, 3 or 4 weeks in the future (or sooner, if shit really hits the fan and I earn a luxurious hospital vacation).

I haven’t fallen apart. But I am just sad enough and scared enough for a funk. To wonder what the point is of getting up, showering and doing something productive.

The cynic is in me today and she isn’t budging. She feels like a hamster on a wheel. Running and running and running so that she can feel like she’s in control. So she can feel like he’s moving when she’s really just running in place. When she’s really just at the whim of powers greater than himself. Acceptance or Apathy? Does it matter? The ending is still the same.

I’ll close out today’s mood with yet another Modest Mouse lyric. Nobody captures cynisism with words quite like Isaac Brock:

“I said something but I didn’t mean it

Everyone’s life ends but no one ever completes it

Dry or wet ice, they both melt and you’re equally cheated”

– Modest Mouse, “The Dark Center of the Universe”

Oh, we’re so disarming, darling, everything we did believe
Is diving, diving, diving, diving off the balcony
Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave

Hold ourselves together
With our arms around the stereo for hours
La, la, la, la, la, la, la, la
While it sings to itself or whatever it does
When it sings to itself of its long lost loves
I’m getting tied, I’m forgetting why

Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave
And I’ll be with you, behind the couch
When they come on a different day, just like this one

We’ll stay inside till somebody finds us
Do whatever the TV tells us
Stay inside our rosy-minded fuzz for days

The National, “Apartment Story”

If you’ve noticed that my blog postings have been more spaced out recently, there is a reason for that.

You have probably already gleaned by now that I don’t tend to preen and edit these posts tirelessly before hitting the “post” button. In fact, most of my blog posts are hammered out in a single session that leave me nothing more than a blubbering mess. I am okay with doing it this way. When I began, I declared this blog to be my “public therapy.” Pounding out these posts, as I do, keeps things raw, but also leaves them prone to roughness and small errors (which I, admittedly do go back and polish a bit when I re-read them in the days after posting). While that isn’t very professional, this blog has never been professional. It’s instead deeply, deeply personal.

The emotional toll that these posts take on me leads to the desire to write them in privacy- something that has been a rare commodity with the husband and kids now hunkered up with me 24/7. Nothing is more awkward than one of my kids walking by while I am sloppy crying and typing and coming over to ask, “Mommy, what’s wrong?” forcing me to come up with some lame excuse. My solution to this has been to just avoid writing altogether.

Side Note: Yes, my kids do know that I have a blog. No, they don’t read it. They don’t want to and I don’t want them to, so I guess that it’s mutual. For right now, I want my girls to stress only about the types of things that middle school girls usually stress about- friendship drama, schoolwork, etc. My son is more existential (yes, he’s a lot like his momma). I can tell that he thinks about what is happening to me quite a bit. Although we try not to hide anything from the kids, my son especially isn’t emotionally ready for the raw language in this blog quite yet. There will be plenty of time for my kids to visit this later if they choose to.

Having family around constantly has led to another type of avoidance altogether; one which is also contributing to my reluctance to write. Avoidance of THE SAD AND SCARED FEELINGS. This could be construed as unhealthy, but it isn’t as bad as it might first seem. It’s just that these days I have been wrapped in a warm, safe, cocoon that is buffering me from them. Creature comforts and love saturate me. In our family, we do not shy away at all from physical contact and snuggling. Because of this, I realize that in many ways I am actually feeling less isolated under quarantine than I have been in a very long time. Right now, with regard to my health, I am swimming without a bottom. My family has given me something safe to hold onto.

Of course, I still know that I am not safe. Periodically, that realization punctures through and breaks down the fluff until I break down. But those moments have been much fewer and further between.

In my post, “Que Sera Sera” I discussed the concept of letting go of expectations and control, and how it’s the hardest thing that I’ve ever had to learn how to do. It’s been a long search, but I think that I’ve finally located the crack to allow these concepts to seep in. I am finally letting go of expectations that will only lead to more suffering down the line.

I am now two treatments in to my clinical trial, with my first scans in about 2-3 weeks. I know that there is only a small chance of success. I know that there is a very high likelihood that my next scans will show progression. I am expecting nothing better. In so doing, I am hoping to avoid another wave of crashing grief when those things inevitably happen. Adding fuel to this is that I’ve had two more infections in the past 6 weeks (UTIs that have been difficult to avoid ever since my right ureter got blocked by my pelvic tumor, leaving some permanent compression in its wake). This means antibiotics. Some studies have shown that immunotherapy drugs such as the ones I am now taking are a lot less effective with antibiotic use, thereby lessening the chances even more that this treatment will work. I could scream and bemoan my bad luck, yet again- but what would be the point? It is, what it is, and I can’t control that. And the results on my next scan as a result of it? Well those will be what they will be as well.

Lately I’m focusing more on the good things, which I have now come to consider to be bonuses. It’s a huge bonus that my trial is still going at all with so many of them now being cancelled across the country. I think back and realize that had I not gone for a second opinion when I did, I would have continued with my prior line of chemo under the assumption of stability and would only JUST NOW be figuring out that I had progression. And with the situation what it is right now with COVID, probably would no longer be eligible for acceptance into any clinical trials.

I also consider it to be a bonus that I’ve so far avoided COVID-19, despite traveling across state lines every week or two and staying a night in a hotel each time to participate. And the side effects from the trial drugs themselves? Minimal. So far, after two infusions the side effects are much reduced from what I usually have during chemo. Instead of grieving over the loss of social outings, like the cancelling of the National’s Homecoming Festival (which I had REALLY been looking forward to, with my favorite band- who I probably not live to see live again- headlining both nights) I am focusing on the gift of being in good health and being surrounded by my family during these precious months.

In summary? I’ve learned that when expectations fly away all that remains is gratitude for the things you have and are given. In literary terms, I believe this means that we are finally reaching the arc of my story; or that moment when the protagonist finally learns her lesson, thereby undergoing transformation. Not a lesson given, but instead sought out on its own.

All of my prior beliefs that all things can be controlled, or that “doing things right” means that you will achieve certain outcomes have been tossed off the balcony, and they are now in free-fall beneath my feet. If you are looking, you can find me behind the couch singing along with my arms around the stereo- until the denouement finally comes along to find me.

I am not the only traveler
Who has not repaid his debt
I’ve been searching for a trail to follow again
Take me back to the night we met

And then I can tell myself
What the hell I’m supposed to do
And then I can tell myself
Not to ride along with you

I had all and then most of you
Some and now none of you
Take me back to the night we met
I don’t know what I’m supposed to do
Haunted by the ghost of you
Oh, take me back to the night we met

Lord Huron, “The Night We Met”

I have many images of you. You, in high school with your long, multi-colored hair and blue combat boots. You, smiling and goofing off with your friends. Playing lava tag after dark. You, in college partying. Laughing, joking, procrastinating.

You already knew then that you wanted to spend the rest of your life with me. You knew that you had to get your act together and graduate in order to make sure that life happened. And every weekend you traveled that 90 minute trek in your aging silver Oldsmobile Omega, laundry in the back, to visit me.

And me? I knew that I wanted to spend the rest of my life with you as well. Me, holding on to you for dear life before your three-week trip to Hawaii after graduation. Me, looking forward to you coming every weekend. I chose you. My best friend. My kindred spirit. The one with my sense of humor and sarcasm. The one that I could talk about the BIG THINGS with.

I have images of you. Looking at me. I didn’t need romantic gestures. I just had to look at those large, piercing blue eyes. All of my answers were right there in front of me.

I came across a photo album of pictures of you, and of us, from those high school and college days. The days before you had lines on your forehead and dark circles on your eyes. We had the whole world in front of us, and we had each other. We had everything. And we were so… care free. Seeing you in those photos struck me. You, unencumbered. What I wouldn’t give to see you look that way again.

Years of marriage chipped away at that a bit. The years with small kids are always weighty. Suddenly, we were now not just responsible for ourselves. We had another person, and then people to support. Little people who depended on us for food, shelter, creature comforts, and love. We got tired. Sometimes, we snapped at, or resented each other.

It was important to get away, just the two of us, to reconnect. Date nights, concerts, vacations… Seeing our favorite bands live was our mutual escape. Perhaps slightly more for me than for you. I think that you went out to them with me because you loved to see me happy as much as you wanted to see the band yourself.

Another image. You and me at Lollapalooza ten years ago. You got out your camera and took a picture of us. You wanted to capture that look of carefree joy on my face. The look of joy that brought you joy. That weekend ended with Arcade Fire on the South Main Stage. They closed with “Wake Up.” The crowd was so caught up in the moment that the main chorus became our joint anthem long after the band had left the stage. We all sang it as we moved like cattle through the crowds. We all sang it as we poured out into the warm summer streets of Chicago.

You never sought the sky. All you wanted to do was to get married to me, have a solid job, and have some kids. Five years after we were married, we had all of those things. I loved all of those things as well, but I got greedy. I wanted something more. I wanted a separate identity all of my own in the form of a career, and I invested too much into it, assuming that it would pay me back some day. And when it didn’t, I struggled. You tried to tell me. You tried to pull me back, but I wouldn’t listen. Until I had to.

You were not in the room when they told me that I had cancer. The staff told you to take the kids out of the room, because the resident hospitalist needed to speak to me over the phone. You were not prepared. You thought that we were on the verge of laughing about that time that I had to be admitted to the hospital over digestive issues. When you came back to the room, I told you what the doctor had said. Your entire demeanor morphed into shock and disbelief. You were not prepared to hear the words, “malignant tumor.”

You had everything that you ever wanted in life. But you were not prepared for the rules to change in the middle of the game. You didn’t ask for much, and you worked hard for what you had. A dark and arbitrary plot twist was not supposed to be part of your story. When you had to leave the hospital that night to get our kids settled in for sleep, I saw something in your eyes for the first time. Something that hasn’t gone away since. That something was, and is, fear.

These days, you are carrying it all. Taking care of me. Taking care of the kids. Taking care of all of your work obligations. I try to remind you to take care of yourself. I try, every day to show you how much I adore you. I try to make sure that you know how amazing you are as a father, a husband, and a friend.

I would do just about anything to hit rewind. To see the worry leave your face and the weight leave your shoulders. To see the hope that you once had come back. To see the fear finally leave your eyes. What I wouldn’t do, to go back to that place we once had, that we will never get to experience again. Even if just for one night.

But we can’t rewrite the chapters of the past. We found each other. That’s something. We created three beautiful human beings together. That’s something.

And I know how you feel. I know that you wish that your story could end with mine. That you could follow me into that dark tunnel. But you can’t. Because you have to stay here and finish raising our children. To let them know that you will not leave. To love them unconditionally. To be the one that they can always go to for anything.

I have many images of you, far in the future. Watching the kids graduate. Moving them into college. Holding our grandchildren. And maybe, some day, finding someone new. You, smiling with your friends, your children, your family. You, partying and laughing. You, living life, once again, with hope instead of fear.

As I stared at my shoes
In the ICU
That reeked of piss and 409

And I rationed my breaths
As I said to myself
That I’d already taken too much today

As each descending peak
On the LCD
Took you a little farther away from me.

Away from me…

Death Cab for Cutie, “What Sarah Said”

People with stage 4 cancer have nerves of steel. We’ve dealt with dire predictions. We’ve grown comfortable with uncertainty and fear. We’ve stared into the faces of our own mortality. It takes a lot to shake us.

As someone with stage 4 cancer myself, I can tell you that my brain has gone to many places and been through many phases over the course of the past several weeks:

• Three to four weeks ago, I remember thinking that I’ve withstood SO many rounds of having my hopes crushed and worst case scenarios that if I actually caught corona-virus that I would pretty much at that point just be dumbfounded, have one last drink and say goodbye. I even entertained the thought that death from the virus might actually be less painful and drawn out than cancer…
• Two to three weeks ago, I remember feeling that it seemed as if the rest of the world had- finally- caught up with how I’ve felt every day for the past 18 months. They are finally experiencing what it is like to have your whole world turned upside down. They are feeling the tiniest shadow of what it’s like to worry about getting sick or dying, and to not know what is coming next. I felt for the world, but at the same time felt oddly comforted to not feel completely alone in feeling that way.
• Two weeks ago, the reports started flooding in from Italy. There were stories of not being able to save everyone, leaving the elderly and persons with co-morbidities to die without treatment since there weren’t enough ventilators to go around. They were taking ventilators away from people who were deemed to not have enough life years left to be “worth saving” in favor of those who did. I took deep, hard, mental stock for the first time that people like me were now considered to be acceptable sacrifices for the otherwise healthy and newly scared people who might catch the virus.
• One-two weeks ago, I learned that Washington State had briefed it’s medical personnel on a triage plan very similar to that of Italy’s- persons 80 and over or persons under 80 with a co-morbidity scale of 5 or more were to be refused treatment as soon as need approached the level of ventilators available. The message came to me via a Facebook post from Washington State physician Dr. Morhaf Al Achkar, who has stage 4 lung cancer himself, stating that his own cancer put him on the scale at 6.
• One week ago, I read this article: https://www.healthleadersmedia.com/clinical-care/medical-worker-describes-terrifying-lung-failure-covid-19-%E2%80%94-even-his-young-patients This was the first time that I’d read about the experience of someone dying from this disease. It was not, as I’d imagined several weeks earlier, a quick and relatively painless death. It was torture. You basically slowly drown to death on your own lung fluid. Think this isn’t torture? Try waterboarding.
• And in the past week?
  • I’ve witnessed politicians, internet trolls, and Covidiots coming out of the woodwork to say that sacrificing some lives for the sake of the greater economy was the best plan.
  • I’ve read about Lupus patients being denied medication because our President said on camera that it could be used against COVID-19, despite very dubious evidence to support that position.
  • I’ve read an account from a hospital in MI that was not only out of ventilators and masks, but out of painkillers in the ICU altogether.

As you can imagine, all of these events have had a profound impact on the cancer community as a whole, but especially among those of us with stage 4 (terminal) cancer. Concurrent with all of the events above, I also read about several things that were happening specifically to those of us within the cancer community:

1. Clinical trials are being cancelled. Trials that stage 4 patients have been counting on for a chance to extend their lives. Trials that they went off chemo several weeks prior to in order to even qualify,
2. Surgeries are being cancelled. Surgeries to remove tumors and disease have been put on the shelf until some point in the unknown future.
3. Chemotherapy itself is being cancelled, as hospitals and doctors have to make the tough choices as to whether bringing someone in for treatment is more or less dangerous than the risk of them getting further immune-compromised, or possibly even being exposed to the virus while going in for treatment. Terminal cancer is scary enough. Terminal cancer without treatment is the wild, wild, west.

All of this has put myself, and many others like me, in a very particular psychological and emotional state. I worry about my own clinical trial that I am depending on to extend my life. I worry about people who feel invincible ignoring social distancing rules and exposing my family to the virus. I worry about the country “opening up” again and all hospitals being so overloaded that I will need to hide in my bunker to protect myself for the rest of the time that I have left on this earth. I worry about what will happen if my husband, who is my primary caretaker, gets this virus. I wonder what will happen if I get this virus…

I have nightmares of being locked up with the other people not deemed worth saving in the hospital, left to die without anyone I love around me. I get visions of being tossed into the wheelbarrow of dead people being ushered down the street like in the Monty-python movie.

Seems ridiculous, right? But it’s not really all that far from the truth. People who die of this virus, even on a ventilator, die, gasping for breath, all alone and away from their family. Everyone dying right now from ANY cause are now quickly buried with maybe only one family member present. Everyone dying right now is being denied even the humblest of memorial services or even celebrations of life.

Even if I die from cancer, I wonder- will anyone be able to come and say goodbye before I die? Will I ever get a memorial service? I can assure you that all of these things have led to some very serious and very disturbing conversations between my spouse and I behind closed doors.

What if… there aren’t enough medical staff to come out to my home and give me hospice care when I get sick? What if… they begin rationing and diverting even pain medications away from people with cancer and to only those COVID-19 patients deemed worthy of saving? What if no matter whether HOW I die it is in utter, complete agony and without medical assistance?

Should I even bother to inquire about treatment if I catch the virus and risk getting quarantined away without treatment and left to die? Do I even want a ventilator if I WERE offered one? I have a living will and have made it clear that I don’t want to die on one. Especially all alone. I would only want one if it meant a chance at recovery and several more months at life. Is it even realistic to think that would be the case? I am not the only one feeling the weight of all of this right now. These are thoughts that I should never, ever have to think, conversations that I should never, ever have to have and decisions that I should never, ever have to make.

Please think of me, and others like me as you decide that it is okay to go back to life as usual. Please think of me, and others like me as you decide that there are acceptable sacrifices to be made among the elderly and immune-compromised for the sake of the economy.

Signed,

A human being.