What it’s like to have Terminal Cancer During the COVID-19 Outbreak

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.

Tunnels and Time Capsules, Part 2

It’s not the honors and the prizes and the fancy outsides of life which ultimately nourish our souls. It’s the knowing that we can be trusted, that we never have to fear the truth, that the bedrock of our very being is good stuff

As human beings, our job in life is to help people realize how rare and valuable each one of us really is, that each of us has something that no one else has- or ever will have- something inside that is unique to all time. It’s our job to encourage each other to discover that uniqueness and to provide ways of developing its expression

Fred (Mr.) Rogers

When it’s all gone, something carries on… When my blood stops, someone else’s will have not. When my head rolls off, someone else’s will turn.

You can mark my words, I’ll make changes to earth

While I’m alive, I’ll make tiny changes to earth

Frightened Rabbit, “Head Rolls Off”

Audrey, Lucy, and Jack,

I’ll use this part to pass on whatever “sage” advice I’ve learned through the act of both living and also through learning to die. I am not passing these along under any guise that I was a perfect person (far from it), or that I always followed them myself. They are just more or less “truths” that I’ve arrived at that I hope that you can learn to embrace at a stage much earlier than I did.

1) Happiness and love are the two most valuable things that you will ever possess in this life. Don’t ever lean on or sacrifice those things for anything. Not to please someone. Not for money. Not for material possessions. Hold these things close to your heart. Because they are the core of life.

2) There is no other “you” in the world. So what do you have to offer it? What do your unique talents, personalities and perspective have to offer the world? Think about those things and use them to make some tiny changes to the earth while you are still alive. Make tiny changes every day. They might have a ripple effect that you never even get to see. Do them anyway. All three of you are the “tiny changes” that I am most proud of in my life. My greatest happiness in life has been to have you and to know that I am sending three authentic, amazing people out into the world for long after I am gone.

3) Purpose is vital to happiness. When you lose it you lose direction and all kinds of other bad things and dependencies swoop in to take it’s place. Always have a purpose, and if life throws you around and you lose it? Find another one.

4) Love yourself. Love your crazy. Love your loud. Love your creativity. Love your sense of Justice. I know that I already love all of those things about each of you.

5) Be your own truth, and tell the truth. But be prepared. Many people will want to squeeze the authenticity right out of you. They might punish or isolate you for refusing to conform and put on a facade. Being your truth will at times have unintended consequences. Decide what things to fight for and what things can wait another day. An added bonus to honest living- not ever having to cover, hide or lie to protect the truth.

6) Always try be a good person. All three of you already are. Please note that I didn’t say perfect (anyone claiming or projecting that is probably a fraud, btw) but do try to be good. By that, I mean always try to do the right thing by your values, and by your conscience. Nothing you can get by crossing your own sense of right and wrong will ever be worth gaining guilt or regret. Or not loving yourself as much as you deserve because of it. You will screw up time and time again. Know that when you do, tomorrow’s a new day. Tomorrow is another chance to make the right decisions toward being the best version of yourself that you can be.

7) You can only control yourself. You will meet many people in your life below your level in terms of character and means of discourse. The world will always have toxic people. Never lower yourself to try to meet them eye-to-eye. If they have proven that they can’t meet you at the higher level it’s better to limit interaction altogether than give up any of your time or happiness to them.

8) Don’t give up. Work hard for the things, people and passions that matter. But don’t sacrifice your people and passions for work that doesn’t matter.

9) Understand that there are some things beyond your control. Fix the things you can, but have the foresight that I did not have to recognize the things that you can’t. There will be horrible things that break your heart that are driven by forces beyond your control. Don’t sacrifice your health and well-being to ruminations and anger. Be angry, be sad, be hurt. Cry at the injustice. And then let it go.

10) Know that who you choose as your life partner is very important. Do not settle for anything less than you deserve. Do not settle for anyone that loves themselves more than you. Do not settle for anything less than what your Mommy and Daddy had. This will be a bigger determinant of your future happiness than you can even imagine.

I have so much more to say, but I fear that if I go any further that it will just become rambling that will dilute all of the good stuff. So I will stop again for now.

See what I’ve done? I’ve done a darn good job at putting off the hardest stuff, still. I need to write a personal message to each one of you individually. That will be the subject for a future entry, when I am well-stocked with tissues.

With love. Always,

Mom

Tunnels and Time Capsules, Part 1

There is light, but there’s a tunnel to crawl through

There is love, but it’s misery loves you

We’ve still got hope, so I think we’ll be fine

In these disastrous times, disastrous times

Frightened Rabbit, “The Oil Slick”

To my Audrey, Lucy and Jack,

On a Thursday afternoon in mid-to-late March of 2020, we all needed to get out of the house. Unfortunately, we couldn’t really go anywhere. All of the restaurants were closed and social distancing narrowed down the places that we could go to significantly. So Daddy had the idea to jump in the van and drive around Dayton playing a game of rubberneckers. If you recall, this was basically a scavenger hunt with points for things that you see while traveling. Shouts of exaltation were pronounced with every find, and every tough item (station wagon, weather vane, etc.) was complained about excessively. It was a typical scene for our family. There was a lot of laughing, a great deal of sarcasm and a bit of trash talk. It’s a scene that most would look upon and think that we were a normal family on a normal day. They wouldn’t be able to see what our family has been through so far, and that the toughest times are still ahead. A casual observer would have absolutely no clues that our family, and seemingly the whole world, is currently on the verge of some very dark days.

I know that it’s quite likely that you won’t remember this day, or even this game. But you will remember these months to come as one of those “before and after” periods of your life. You will frame events in your childhood as, “Was this before ____ or after?”

In the past two weeks, it seems almost as if the rest of the world is starting to catch up to where we’ve been for months: First the disease, then the false hopes of resolution, the panic of realizing impending doom, and then waiting; hanging on to the news for increasingly pessimistic developments. Most will eventually emerge to brighter days at the end. But some of us won’t. And some will be left grieving for someone that they love. It’s a dark, miserable tunnel, but it’s one that I am afraid that you must go down. As much as I would give anything to protect you from it, I cannot. And so you must emerge, wiser and stronger, when you get to that light on the other end.

What is a tunnel for you is more like a time capsule for me. At some point, the lid will be sealed and I will become stuck somewhere in your past. I will become memories that fade a bit with time, photographs, and Facebook postings. Because I do not know exactly how long I can walk with you, I need to finally do the hard work that I’ve been avoiding. I have to carve some words into this wall with hopes that some day you will come back with a flashlight to read them. There is so much to be said, and most of it will result in me crying buckets all over the keyboard. Part of my avoidance has been due to struggling with where to begin. No more. I will have to just start writing and decide where to go from there.

First, know that I didn’t want to leave you. I fought like hell to stay here longer, but the universe reminded me that I was not special. At times, I want to scream from the rooftops, “This isn’t fair!” But doing that doesn’t change anything. I can’t change what’s going to happen to me, or to you, or to your Dad any more than I can change a world that seems to be falling apart all around us. I’ve bargained and pleaded. I’ve lined up planes on the runway. I’ve screamed into the void. I’ve cried deep, mournful cries. I’ve had to live with the mantra of trying to change what I can, but accepting that I can’t change everything. Through this process, I’ve been able to get to a sort of sad place of peace with all of this. I know that these weeks and months will stay with you. I hope that I don’t disappoint, fail or scare you . I hope that I can teach you that it’s okay to be human. That it’s okay to be sad and vulnerable at times, and okay to brave and resilient at others.

Secondly, know that despite everything that is going to happen over the next several months, you are going to survive. It will be very difficult and very messy but you will survive. Our family will survive. No matter what the world throws at you, you will always have your Dad. And he is the best dad, husband, and overall person that you could possibly have in your life, just like you are the best kids that he could have in his. Dad’s love for you and Dad’s need to take care of you and keep you safe runs as deeply as it can go. You will also always have your siblings. As your Mom, I can tell you that I see it. I see that you love each other. And I know that no matter how different you are or how much you argue, the Stokers are a unit that will always look out for each other. Because you are mine and Dad’s children. Because you are resilient. And because you have each other’s love. Please don’t ever take that for granted or lose it.

You will always have my love too. I can guarantee that mom’s love for you is so big, so dense, so bright white and glowing that there is no way that it could ever dissipate with death. It will wrap itself around all three of you and around your dad for as long as you walk the earth and beyond.

I can barely contain how incredibly proud I am to be your mom. I have had the pleasure of watching all three of you grow into the young people that you are right now. I love to watch you get lost in play or wrapped up completely in a creative project. I love to see you work towards a goal. I love to hear your emerging and growing thoughts about the world. I love to see you stand up for yourselves or for someone else. I love watching you become more of the you that you are every day. You get to decide exactly who you will be by the time you grow up, and how you will change as you continue to live and grow through life’s experiences. I do not know where I will be when you become what you become, but I promise you that if there is a way for me to keep watching you I will. Because the very thought of missing out on all of that aches me.

I don’t get to know what the future will hold for either the world, or for you. But I want you to know that I know that you get through it. To yell and cry when you need to. To not get so stuck in the bad that you miss the good. To courageously be yourself when the world tries to change you. To make mistakes and learn from them. And to either conquer or make peace with whatever challenges fall before you. You are all already imperfectly amazing human beings destined to become even more imperfectly amazing adults.

The keyboard is beginning to get very wet, so I should probably pace myself. There is so much more that I want to say to all of you and each of you, but I have to stop for a bit.

More to come. Love, Mom.

Que Sera Sera

 
When I was just a little girl,
I asked my mother, “What will I be?
Will I be pretty? Will I be rich?”
Here’s what she said to me
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be”
When I grew up and fell in love
I asked my sweetheart, “What lies ahead?
Will we have rainbows day after day?”
Here’s what my sweetheart said
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be”
Now I have children of my own
They ask their mother, “What will I be?”
Will I be handsome? Will I be rich?”
I tell them tenderly
“Que sera, sera
Whatever will be, will be
The future’s not ours to see
Que sera, sera
What will be, will be
Que Sera, Sera!”
 
“Que Sera, Sera,” written by Evans Raymond B / Livingston Jay
 
In the past week, it seems like the entire world has been turned upside down.  Schools, events, and businesses are closing. Almost everyone I speak to says something along the lines of “It all just feels so surreal”. It feels surreal to me too. The only difference is I am already well-acquainted with this feeling. That feeling that everything that you know has suddenly changed.  That scary feeling that you don’t know what is going to happen next. 
My world has also been turned upside down, but on a much larger scale, and it’s been that way for about eighteen months now. My husband and I still occasionally turn to look at each other at night, with the full weight of the world draped over us like a blanket and he might ask “What happened, love? How did we get here”? “We just did,” I now answer, and the discussion ends there, because there are no longer any other words to say.

 

With these latest world events, I now find myself in the unique position of facing several crises at once:  1) that my current prognosis has shifted from years to months, 2) that the world is now facing a pandemic that could kill me much quicker than the cancer will, and 3) that I have now essentially been sequestered to my home for what may be the sum of the “healthy” time I may have left. I have already had to cancel a trip to Chicago with my daughters and some girlfriends. We were going to go to museums and see a show and I was going to make some memories- both with my daughters and with my friends. That’s off now. So much for a bucket list, and for going out and “living life to it’s fullest.” 

Even if I don’t get the virus itself, I still have to worry about the hospitals being overrun and the possibility that my treatment or trial will be postponed. There seems to be no end to the things to be worried and sad about. Many people are feeling very worried and shocked. They feel scared for themselves and also scared of passing the virus to weaker family members or friends. That feeling of unease and fear of the unknown is just the tiniest shadow of the frustration and fear that I have been feeling, every day, for a very long time now.  Unsurprisingly, all of this has caused the blues to come visit me. They creep around the corners looking for weak spots to slip into. And I feel the weight of it dragging me down.

But I have been here before. It isn’t my first time wading in dark, cold waters. It’s just me grieving again.

The only thing keeping me going right now is the hope that comes with a new clinical trial. But I am also smart enough to know that it’s far more likely to not succeed than succeed.  It will take 2.5 months to wash my prior chemo out of my system, begin treatment and get my first CT scan six weeks in.  A lot can happen in 2.5 months.  I could progress quite a bit. Despite that, I know that I have to take a chance, because third line chemo offers very little in the way of hope. A trial offers hope. Hope of a long shot chance that I might catch some success in a jar and follow it’s light down a path that gives me more time.

In the meantime, I work through the colors.  Blue is the sadness creeping in at the corners.  Yellow is the anxiety that rises and pours through my chest.  But I see another color that began in my brain that is now soaking into my neck and shoulders.  It’s the dull silver-grey sheen of acceptance.

“Que sera, sera, whatever will be, will be. The future’s not ours to see. Que sera, sera.”

My grandmother on my bio-dad’s side used to sing this to me before bed when I was little. Despite my bio-parents divorce when I was very young, my brother and I would stay at my grandparents’ house quite frequently. Sometimes weekends. Sometimes, longer during the summer. They lived in Huber Heights, Ohio in a small, original Huber home shaped like a brick.  Grandma had embraced old age well before her time.  She wore nightgowns and smoked, and had severe arthritis. She was best distinguished by the tall grey, curly beehive she wore atop her head.

She was only 65 when she passed away at St. Elizabeth’s hospital.  That was where I witnessed her frail, grey frame against the wires and white sheets. That was where they told me that she was dying and that I had to say goodbye. A sudden, overwhelming sadness came over me, triggering a series of sobs that shook me as I broke down in the hallway.  I flipped over the bucket and let my mourning pour out with a long, powerful splash onto the floor.  And once it was empty?  I pulled myself together and then after that, strangely, moved on. She loved me, but I knew that she had a special place in her heart for my brother. She loved him more. At least that’s what Mom would always tell me.

In Grey’s Anatomy terms, she was my brother’s “person.” The person who loved my brother unconditionally during a time when nobody else did. I think that the reason she loved him that way because she knew that my father- her son- didn’t.  When she died, I think that it hurt my brother more than anyone else. Thirty years have passed, and I suspect that he hasn’t mourned anyone as hard since.

Although my bio-parents marriage happened largely before I started collecting memories, my mother used to tell me that “if he ever loved anything, he loved you.” Though most of my memories of him are post-divorce, I don’t remember feeling love. I just saw a bored man with a bowl haircut, who attempted to talk to me during scheduled visits. If I talked back at all, it was in short concise sentences. I was the quiet kid, remember? 

At home I would either stay in my room or wander off and make up innumerable outlandish fantasies. Of fairies living in the flowers. Of the village of fairies living in the Christmas tree. Of the perfect life I was gonna have when I grew up. Around him? I just wanted to be somewhere else, and was able to that perfectly clear to him even at the age of six. Much of this could probably be attributed to the fact that my mother trashed talked him constantly.  Even then, she always referred to him was “midget stick” and minced no words explaining to me exactly what she meant by that.  Despite that, I recall feeling that there was something about him that I didn’t like.  He didn’t give hugs or affection. It was kind of like I didn’t really know him at all, and witnessed nothing that made me want to.  And there isn’t a single thing he did afterwards in his life that proved that this instinct was wrong.

I did get trips to his new wife Phyllis’s house and to his new wife’s mother’s house.  She lived in a condo and had white, cottage cheese hair and I thought that she was one of the golden girls.  I also got to visit with my new step-siblings. They all had red hair. They were my step-siblings until he divorced their mom to too and then went on to marrying somebody else. Not too long after my Mom re-married, bio-dad kind of disappeared altogether, along with his child support payments. When I was 12, he made a deal to sign away his parental rights in exchange for not having to pay child support. My brother and I dressed up and sat down in the judge’s chambers. I recall shyly telling the judge that I wanted nothing more than for my step-dad-who-was-really-my-real- Dad to FINALLY be that way on paper.  My brother’s response was also yes, but his voice had the weight of reluctance. In the back of his brain, I think that was still holding on to that possibility that he would one day squeeze some love out of his “real” Dad.  And they did reconnect for a type of a love/hate co-dependent relationship once my brother became an adult.  At least until my bio-dad collapsed from a major heart attack one day after being dismissed from a health clinic.  I often wonder whether my big bro ever even got a sliver of what he was seeking. Que sera sera

So much of that history comes out in how I have raised my kids.  When people use the word “good Mom” or “best Mom” I always correct them. I am the okay-est Mom. What I don’t do is hover over homework assignments to make sure that they get every question right.  I also don’t volunteer at the school and make friends with all of their teachers and coaches in order to give them a “leg up.”  But I DO try to be the best Mom when it comes to the things that they really need. And what they really need is just two things: 1) someone who will be in their corner and show them that they are loved unconditionally, and 2) someone who will take interest in the people that they are becoming, trying to steer them into the best version of those crazy, creative, unique selves that they can be.

Okay, back to Grandma.  Que sera sera.

Grandma was a Catholic and attended a large congregation and gave her ten percent every week even though she and Grandpa lived solely off of a military retirement and social security. On her death bed, her only request was to see a priest to confess. It took her three calls to the priest at her church to finally get him to bother to go there and spend a few moments with her before she passed.

Whatever will be, will be

Grandma believed in fate and God’s will. When I grew up I believed that I would be in control of my life, and it drove every motivation I had for two decades. And in the last 18 months of my life, I’ve had to re-learn that I am in control of almost nothing at all.

The future’s not ours to see…

With the Coronavirus just starting to hit, causing cancellations and disruptions of your life, it’s normal to feel some anxiety. We don’t know how bad it’s going to be, how long things are going to be cancelled or whether anyone we are close to in life are going to get sick or be affected. And the worst part is that so much of it is out of our control.  That spinning, uneasy feeling that you have is only sample bite of what I have lived with every day since the moment I knew that my cancer was metastatic.

I have never believed in “whatever will be will be,” because I witnessed others with that attitude around me growing up.  And it seemed to only lead to the belief that others would come along to save them.  And they never did.  So I adopted a different mantra:  “Whatever I work and fight for will be.”  This philosophy gave rise to several expectations:

I expected that because I had worked and planned to build a family and career that they would always be there for me.

 I expected that I would reach a certain level at work, watch my kids grow up, and then travel the world and enjoy my grandchildren in old age.  It’s because of those expectations that it hurt so very hard and so very long when all of those things were taken away from me with the words “incurable cancer.”  I grieved, and will probably never fully stop grieving that future that I expected despite the fact that it was never guaranteed.

I expected that I would get to live longer after diagnosis- possibly five years or longer. If I had only qualified for a full liver resection.  If they had only not found disease in my peritoneum.  If only my chemo had lasted longer before failing. If, if, if. I had to mourn each of those lost expectations in succession. With each onslaught of bad news, I grieved the loss of more time with my family.

What it took me so long to figure out is that all grief is caused by having expectations and then losing them. I believed, despite myself, that if I did “the right thing” that I would be rewarded.  I expected that my run of relative good fortune would continue, instead of taking a very sudden and dark turn (of course, I think that my intuition was trying to tell me something different, but I wasn’t listening). And with each lost expectation comes another wave of pain and grief.  So I’ve finally learned that the only way to stay mentally balanced through something like this is to just stop expecting anything at all.

So I’ve begun, bit by bit, to release all of my expectations.  A crucial step in doing this is to find peace and acceptance with the worst case scenario. For example, my worst case scenario right now is dying of Coronavirus in a hospital corridor (the last place that I would want to die), because they won’t have enough ventilators and I don’t have enough life years left to make the cut. That worst case scenario is most likely not going to happen, but it is possible, so I have to embrace it. This doesn’t mean that I stop trying to live longer or that I abandon my desire to die at home. It does mean that I have to release my expectations that whatever I try will succeed. The truth is that no matter what I do, I may die both sooner and less poetically than I would like to.  I have to accept that truth so that if it happens I don’t waste time mourning it before I die.

I can’t “expect” that this trial will work. It probably won’t.  I can’t expect that that this pandemic won’t be as bad as they say. It probably will. I have to accept that I won’t get to go out and do more of the things that I wanted to do while I am still healthy.  Nothing is ever guaranteed, and I don’t have enough time left to mourn another expectation lost.

Slowly, but surely, this re-framing is beginning to work.  Here is a hard truth- accepting the fact that I am powerlessness to fix bad things is the hardest thing that I’ve ever had to do in life. 

But I am doing it anyway, because it’s the only answer right now.  And I have to keep working at it- reminding myself daily. I can’t get tempted to lift the divider between effort and hope and acceptance. Those things must stay separate, if I am ever going to find that place of peace before I die.  That peace (mingled with sadness) that I am finally just now beginning to feel…

Whatever is going to happen over the next several weeks; with my health, with the virus, etc. is out of my control.  And I am finally becoming at peace with that.  With that acceptance comes the knowing that I can no longer put off tying all of those loose ends. Those things that must be done before I become too sick.

“Que sera, sera, whatever will be, will be. The future’s not ours to see. Que sera, sera.”

To Sleep, Perhaps to Dream…

Sleeping is giving in
No matter what the time is
Sleeping is giving in
So lift those heavy eyelids
People say that you’ll die faster than without water
But we know it’s just a lie
Scare your son, scare your daughter

People say that your dreams are the only things that save ya
Come on, baby, in our dreams
We can live our misbehavior

Every time you close your eyes (lies, lies)
Every time you close your eyes (lies, lies)

People try and hide the night underneath the covers
People try and hide the light underneath the covers

Arcade Fire “Rebellion (Lies)”

For the past month, I’ve been both sleeping and dreaming quite a bit. They are large dreams, epic dreams, the kind of dreams that you could write a movie script off of. In my sleep, they seem to last for hours. Then I am usually awakened out of them with a jolt, most often by my husband. For the next few moments, the dream, and sleep itself wants to pull me back in like I am trapped in an elaborate spider web that I can’t shake off despite enormous effort. Sometimes I try to explain it to my husband, but the dream falls off when I realize that the perfectly logical epic movie makes absolutely no sense when words begin to touch it. And then I get out of bed, covered in rubber cement, trying to rid myself of the dream and ease back into reality.

There are logical reasons why I am sleeping and dreaming so much lately, a big one, of course, being that I no longer have an alarm clock. Always a morning person, it was never difficult for me to jump out of bed with an alarm. That started to change when I stopped working. I always thought that I was one of those people who only needed 6 hours of sleep. But I slowly started sleeping longer. And it slowly stopped being so easy to get out of bed. But the most dramatic shift- the one that’s occurred in the past month- is a little harder to explain.

Another answer is that this is depression. It’s probably no coincidence that this started to happen about the same time about the same time that SOC chemo stopped working. Both the depression and longer sleep can explain the more vivid dreams. Sleeping in longer means that I am having more REM sleep than ever before, and therefore more likely to have long dreams and to wake up in the middle of them. If my mind is full of scary thoughts, is it any wonder that these would inevitably work their way into my dreams?

But what if, for a moment, I entertained the fact that there was something more? That my brain and body know something that my fully awake conscience has not yet grasped onto yet? I’ve mentioned in previous posts that through the path I’ve been down since diagnosis I’ve become a believer in my own intuition. What if these dreams are a part of that? What if my body and subconscious are trying to prepare me for something? I suppose that I don’t even need to write out loud what that thing is. A great change or transition ahead. Perhaps the final one…

All of these distractions. All of this technology. All of this busyness that we’ve all been lost in. All of this information. These things pull us away from listening. Listening to what our “gut” (as people like to call it) is trying to say. We wake up early so that we can be more productive. We lie to ourselves a lot. We hide the light under the covers. We hide the night under the covers.

I take a look back, and realize I’ve had a very good “gut,” or intuition about a lot of things and about a lot of people for a pretty good long while now. I just have been ignoring it. For example, I’ve always been very good at spotting somebody who is a fake or a phony- even when the rest of the world around me gets wrapped up in the facade. And I’ve seldom, if ever, been proven wrong. Once spotted, I begin to recognize patterns and can often anticipate or predict the actions and next words to come. I also often (though not always) have had the ability to step back and look at the entire context, or “big picture” of a person’s actions or motivations. Maybe it’s less intuition than it is the fact that I’ve spent a lot of time sitting back, observing human nature, and thinking.

Beware the quiet kid who moves and changes schools a lot. The one who has witnessed in more ways than one just how drastic the contrast between hidden reality and outward projection can be. Beware the kid who’s had a first row seat in the study of humanity.

But my gut, or intuition is still more than just the sum of what I’ve practiced and learned. For example, this morning I got my “on this day notification” from my journal entry two years ago. This was five months prior to my diagnosis:

March 11th 2018: “It seems that I am nearing a few peaks in my life… the end of my younger years, the end of my [long project at work]. Uncertainty about the after… things might end up okay, but the unknown is terrifying. [I have] Unprecedented mental sharpness [and] unprecedented anxiety. The [first] grey hair… The unknown behind the scenes. What the fuck does it all mean?…. Does this path lead to peace and happiness? Does this path lead to an early death? An early death is something that I have feared for a while… Is this process about learning to be happy? [Or] Is a health event pending?”

My intuition was SCREAMING at me that something was wrong. I even journaled about it. And I was SO distracted by stress at work, I was SO obsessed with ruminations on how to fix things that I IGNORED IT. I thought that I could just wait and bear through what I deemed (and people at work deemed) to be an immediate crisis- an immediate crisis that was in reality anything but. The real crisis was brewing underneath. I felt it. But ultimately I cared more about the work “crisis” and pleasing people who literally couldn’t care less about me than I did about my own health and taking care of myself to meet the needs of my own family. My family. You know, the ones who did care about me? I was visibly on the verge of emotionally falling apart. I’d make frequent trips to the hallway or bathroom and come back with red, leaky eyes from completely breaking down. And aside from the two people on my functional work team that had been through the project with me (and who had therefore dealt with the same struggles; fighting to be listened to and getting shut down) nobody gave a damn. My lack of power to bring up existing problems had resulted in many many months of delay, and suddenly NOW it was all about the mission. The people getting thrown under the bus to execute that mission were nothing but collateral damage.

Five months might have made a difference in my longevity and survival. Or it might not have. But I will never know for sure, because I was too busy reacting, and not busy enough listening.

I’m listening now. And in those silent moments? I feel tired. I feel sad. And more and more often? I’m beginning to feel some kind of peace with the inevitable. I think that my body and my subconscious are trying to tell me that I am now on the final lap. And in fact, I am. I have stopped SOC chemo. I just got accepted into a clinical trial. I have entered the wild west. I hope, hope, hope, for good results on this trial. I am grateful for being accepted into it. But I know… I know now how powerless and human I am. I know that I cannot bend the will of fate. I know that this time I have now, where I still feel healthy, is now fleeting and that I need to cherish it, and I know that darker days are likely on their way.

I’m trying. I’m doing the next best thing to keep me here. I want to stay. I am full of hope. But I am also listening. I am welcoming the love and peace around me. I am finding the joy in every moment that brings it. I am being present with my sadness and letting myself cry. Because making peace with my sadness will get me closer to acceptance. I am sleeping. I am dreaming. I am listening.

Defiant Joy

Wish I could write songs about anything other than death
But I can’t go to bed without drawing the red, shaving off breaths;
Each one so heavy, each one so cumbersome
Each one a lead weight hanging between my lungs
Spilling my guts
Sweat on a microphone, breaking my voice
But whenever I’m alone with you, I can’t talk..
“Isn’t this weather nice?”
“Are you okay?”

“Should I go somewhere else and hide my face?”

A sprinter, learning to wait. A marathon runner, my ankles are sprained.

Julien Baker, “Sprained Ankle”

The founder of the Colontown Facebook groups has a saying that she repeats often. She tells us that we should live our lives with “Defiant Joy.” The idea is simple. That no matter how devastating cancer can be, no matter what it throws at us, we can choose to attack it back by finding joy and living it- in every day and in every way that we can.

And my first reaction to this phrase? Okay, I’ll be honest. I hated it. It’s easy, I thought, to espouse this view when you’ve been in remission from cancer. When it didn’t kill you. When you get to survive and be “stronger” for all of the pain that you’ve been through. Or maybe it’s easy when you’ve been playing the long game. When your cancer is slow-growing or you’ve found a treatment that works for you long-term.

“Defiant Joy” is very hard for those of us who are definitely terminal. It’s very hard for those of us whose trajectory towards death is moving far more quickly than we hoped it would be. It’s very, very hard for those of us who stand to soon lose everything and everyone that we love. For those of us who know that there will be scars, gaps and holes in those that we leave behind, and that there is nothing that we can do to prevent it.

My reflexive reaction of anger with this phrase comes from from the trite sentimentality of a cute little phrase that will just solve everything. The perfect catch phrase emerging from a people and a culture that believes in a just world. From a people and a culture that likely won’t have to face death until they have lived a long life, and from a people and culture that have watched way too many movies and TV shows portraying people dying of cancer as joyful, brave and heroic.

We live in a culture where healthy people literally expect people dying of cancer to be like:

Look, I know that you are about to lose, well everything: your life, your future, everything and everyone you love, etc.- but why be SO negative? You really should just focus on the positive. Maybe have a sense of humor about the whole situation? You’re such a downer!

People tire of it because they are too busy dealing with all of the smaller problems in their lives that are still okay to be upset about. The ones that can still be fixed.

Like the quote in the opening of this post, thoughts of death are with me always. When I go to sleep at night. When I wake up in the morning. They are heavy and all-consuming. I crack and “break my voice” into my own microphone- this blog. I funnel all of my pain and fear into my writings. But when I am around others all that I can seem to conjur up is small talk and musings about the weather.

Many people have tried to ‘comfort’ me with religion. They tell me that peace can be found in the faith that heaven awaits and that Jesus will always take care of me. I see this a lot, not just among the healthy, but among the community of other terminal patients that I belong to. And I am jealous. I envy their ability to have that certainty; that unbridled faith that their lore is the correct one, THE ONE that is true among the countless other theological perspectives on the after-life that have existed since man began and which still exist today.

Just a couple of weeks ago, I read about a woman dying of colon cancer who was at peace due to her faith in the the Baha’i religion, where she believes that she will live in the spiritual realm amidst her family after death. It’s a beautiful thought, and I envy that faith. It would bring me comfort, it really would. Many christians, who believe that the only path to heaven is to know Jesus and ask him for forgiveness would scoff at this 34-year-old woman and loving mother of 3. They would shake their heads and tell her that she will not make it into heaven because her lore is different than theirs.

Why would I even want to follow a religion that would exclude someone who is living a life of love because of something like that? It’s because of this that I’ve concluded that the only religion that I can have any faith and belief in is that of love itself. A phrase ingrained upon me from my Lutheran upbringing is that “God is Love”. I believe that, and nothing more.

Some people will distance themselves. Many others won’t, but make it clear from their body language that they don’t want to talk about it. And sometimes I am grateful for that, because I don’t want to talk about it either, because honestly I could use the break too. But occasionally I also resent it.

When something like this happens to you, you will witness some people insert miles of space between you and them. Some of them do this because they don’t want to be hurt, or because of their past history with this or other disease. And honestly, I understand. Others just don’t know how to react and fear doing the wrong thing, and I sort of understand that too. Taking a long, hard look at myself I realize that I used to be one of those people. Other people react in a completely opposite manner. They take a few steps closer. Others have shown me beauty and selflessness that I didn’t even know existed until this happened to me.

Before cancer, I’d been burned by too many people to be able to see this side of people without having a degree of skepticism. Now, I see it every day and it inspires me to be more, to open up myself more, and be a better person myself to all of those who are around me. I see now that all selfish actions are based on fear. Fear of losing something that you hold dearly. Fear of your loss of self or sense of importance. Fear of being without something that you think that you desperately need. Fear of rejection. And those fears were probably ingrained in you from hurts in the past, or from a core belief instilled in childhood that love is something that is scarce or needs to be earned instead of just given.

I suppose that brings me back to the topic at hand. I bristle at people daring to suggest that cancer is a “learning experience” especially among those who have gotten to survive it. You don’t get to tell me that dying of cancer is part of some great plan to teach me the meaning of life. For you, cancer was a chapter or two in the middle where the main character underwent adversity and transformation. For me, it can only be a conclusion.

But I (as in me, myself, no-one else) do have to admit that it has changed me.

I used to tell myself that the only person that I needed to please or impress was me and me alone. Do I feel like I am doing the right thing? Does this action make me feel good about myself as a person? Can I look at myself in the mirror tomorrow? I told myself that I just needed to be right by me and that everything else would fall into place. But those words could never get my heart to believe it fully. I still had fear. I am fearless now. It took facing death to finally stop caring about what other people think about me.

The part of me that now trusts in the goodness of others wants desperately to believe that the people who make decisions that effect the length of time I have left are doing so altruistically. I want to believe this because I have no “leg up” in this game (or any other game) when it comes to knowing the right people. When it comes to those kinds of things, pretty much everything I needed to know about human social behavior both in life (and to the brink of death) was learned by the time I hit high school. We are not now and have never been a merit-based society. We are a society built upon flattery, who makes us feel good, and who knows the right people. Live and tell a truth and it will set you free. But you may find yourself in different jail designed by someone with more social influence or power than you. Decide when it’s worth it. Decide when it’s not.

I want more time. I want time to live my new truth, just like so many other cancer patients and survivors. But there is no plan. God is not deciding that some people deserve to live and some people deserve to die. If you survive, you are not blessed- you are lucky. You aren’t “chosen.” You are lucky. It could have just have easily gone the other way. You could be the one looking at an un-fixable prognosis of far less than a year, hoping for the right science and right clinical trial to you more time. And I could be screaming from the rooftops that God had blessed me and saved me for some greater purpose. How would you feel then? And please don’t waste your time on survivor’s guilt. Just continue to give back everything good that you can to the world that you are so very, very fortunate to still be alive in. And continue to remember and honor those who have passed.

So I am changed, and I am changed for the better. But I don’t get to stick around for the long haul. What do I do with that? I find defiant joy. It isn’t a joy that comes because you told me to feel that way. Or because that is what society expects of me. It’s a joy that I embrace because I, and nobody else, have chosen to feel that way . That’s what makes it defiant. Defiant joy is not what someone else has told me I should feel. It’s what I choose to feel, when I am ready, because life and death have left me little other choice.

So I apologize to the Colontown founder for being so slow on the uptake with this phrase, but I DO get it now. I have moments of joy for no other reason than that I know that those moments are limited. I find moments of joy because I am still blessed to have today. I find moments of joy because I still have the greatest gifts- my friends and my family- surrounding me. I find moments of joy because I still feel healthy and I am not yet completely out of options. I find moments of joy because I have been gifted life up to this point, and because of the legacy (my children) that I leave behind. I find moments of joy because cancer has taken away everything else, and it’s the only thing left I can claim. In these moments, I choose Defiant Joy.

In Suspense (ion)

If only you’d have known me before the accident

For with that grand collision came a grave consequence

Receptors overloaded, they burst and disconnect

‘Til there was little feeling.

Please work with what is left

Death Cab For Cutie, “Ghosts of Beverly Drive”

The last week has been a pretty surreal. I’ve found myself floundering around. There is no post to guide me, and there is no floor to ground me. I am suspended. Last week’s bad news came like a car crash, and a week later I still find myself frozen mid-flight, waiting to discover where the momentum will finally fling me.

Wherever that place is, I am doing my best job of avoiding it for now. Because I know just how much the impact is going to hurt. I am afraid to be grounded, because I know that means taking a hard look at how much closer I am getting to the end of the story. About how quickly I burned through FOLFIRI. About how much longer trials and third line treatments are likely to take me from here. Some people can live years off of FOLFIRI. Me? I got four months (okay, closer to six if you count the time before my surgery). I am through the windshield, the glass is shattered, and debris is flying everywhere. The fate of this disease reminds me, time and time again, that I am not the one in control. My ideas, plans, and goals amount to nothing in this mess.

While suspended, I float from task, to distraction, and back to task again. Any way to avoid overthinking and over feeling. Because the thinking and feeling can only lead to that fear, raw fear, of being closer to death right now than I had imagined and hoped that I would be at this point. In my head, I review all of the milestones I wanted to achieve this year. I still see the last day of school. I still see our annual summer trip with the kids to Cedar Point. I still see a cruise to Alaska in August, six months from now. Then I have to see my Audrey’s first day of High School. Finally, we have to make it back to the ocean as a family as 2021 rolls in…

But I knew not making it there was a possibility. And right now, it looks a lot less possible than I dreamed it would be at the start of this year. How long can I possibly hold my disease back from taking away my ability to travel, or to remove my vigor for life? How long can I hold my disease back before my home becomes a hospice where the people around me have to watch me die?

But this is not the time to panic. Right now, I need to stay logical and strategic. So for right now, I will continue to float about, so that I can examine this scene from all angles.

I read my written report from my scans that I ordered to be received in the mail and circle the appropriate sections to discuss with my oncologist (who has been out this past week). There is a smidgen of good news hidden beside the bad. The 9 cm cyst in my left adnexa that I was worried about on my CT is not FDG active on the PET scan and therefore NOT acting like cancer. This is actually very good because I don’t have to worry about that growing out of control and disrupting everything. This removes what I feared to be my most immediate threat. The bad news? The PET/MRI directly contradicts the CT scan in that my largest liver met grew. My mets also became more “FDG avid” than in my November PET. And it looks like I now have an enlarged lymph node near my liver that appears to be malignant…

So things appear to be definitely progressing, or “waking up.” This point was solidified by my CA 19-9 marker rating coming in at 92 this week, after it was only 82 four weeks ago, and 86 ten weeks ago. My cancer caught on to this line of chemo and it is no longer being effective, and I am currently without a safety net, or new plan of attack for where to go from here.

Avoid the feelings for now, and let the inevitable impact come further down the line. The debris will sort itself out eventually. There will be a plan, and I will try it, and I will strive for success. And the cancer is going to do what it will.

If my cancer is clever, then the only way to fight clever is to continue to keep changing things up. I have to use as many different tools as I have available to me, in quick succession if need be, in order to keep it on its toes and confused. Those tools are first line SOC chemo, Clinical Trials, Surgery, Liver Radiation (Y90, if my liver mets gets worse- not there yet), and third line SOC chemo. I fully believe that if I had not had the three major surgeries that I’ve been through so far, I would be in a far worse place right now. They have bought me time. But surgery is off of the table for now, so my next trick has to be something new altogether. Something that my cancer is not going to see coming.

For additional time with my family, I am willing to take risks. I am willing to undergo pain and sickness. But first I have to get accepted into a clinical trial. I am fresh from SOC chemo. I am healthy (aside from the whole cancer thing). I am young. I have no other ailments or debilitation. I am primed and ready to throw out whatever abuse you can throw at me. I just need to find a trial that will trick my cancer again and give me some additional time.

I know how quickly I can get hyper-focused and overwhelmed, so I alternate trial research with breaks for shiny objects. I communicate with the Principal Investigator to find out what the trial entails and hope that I can get in. And I do still have hope. Because hope serves a vital function. It’s the thing that keeps me going to the next best place that will keep me here for my family. Another thing that I know about myself is that when the time comes, my resolve will be there. I’ve learned that despite my ability to throw an amazing pity party, I just don’t have it in me to quit. It was ingrained upon me a long time ago that I would keep getting up, no matter how much life knocked me down. This is just Heather, suspended, going through the phases of a surprise terminal cancer. The one that nobody expects to hit them just when they’ve hit mid-life.

I’ve asked all of the questions that I can. But there is no answer to “why” this happened to me, other than it was going to happen to somebody. There is no “why” to how my disease is progressing, other than that is my luck of the genomic mutational draw. There is no good answer to “why” I have to leave my family behind and die in my early 40’s other than that it was going to happen to somebody. And that someone is me. So I will hit the ground, because I have to. I will feel the pain, because I have to. I will keep trying, because I have to. And soon, I will write letters and find my way to some kind of peace. Because I have to.

And who knows, maybe, just maybe- there might be room for a small break or a miracle. Luck is a finicky thing. I do not get to choose whether it shines its light on me today or tomorrow. But I have to admit, I am feeling kind of due, should the clouds see fit to break.