Quarantine Chronicles

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.

Images of You

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.

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.

White Walls, Dark Dreams

White noise
I don’t know if there’s breathing or not
Butterflied arms, tell me that this one has flown
Blood seems black against the skin on your porcelain back
A still life is the last I will see of you, my painting of
a panic attack

You died in my sleep last night…
You died in your sleep last night…

Frightened Rabbit, “Death Dream”

The examination rooms at the Cleveland Clinic are stark white. Clinical and Impersonal. If your doctor’s office is high enough in the tower your view can extend all the way to Lake Erie. I’ve sat in these rooms on multiple occasions now. Staring at the blank walls, the blank sink, and the blank examination table. I pass the time by playing games on my tablet with my husband. Between turns, I open up my “notes” app to make sure that all of my questions are written down so that I don’t forget to ask them later. My leg jitters up and down, tapping the floor. I bite my nails. Every now and then I get up and walk over to the window and stare out. Or maybe I squirt some sanitizer gel on my hands and nervously rub them together.

In this room or one like it, I’ve made plans for surgery. In this room or one like it, I’ve gotten bad news. Today, I am here to find out the results of scans with hopes that I might qualify for surgery. My husband says that he hates the Clinic. He hates the whole city of Cleveland. It was here that I had my surgery-not-surgery, – nearly one year ago today.

The path over the sky-way from our hotel is littered with bad memories. We pass the surgical waiting room “This was the place where Dr. Surgeon told me that he couldn’t operate because your peritoneal cancer was too extensive. This is the place where he told me THAT NOTHING COULD BE DONE.” We turn the corner. “That’s the place where I called my Dad crying, wondering how I was going to break the news to you.” Of course, all of that was a false alarm. I was back at this hospital having surgery a month later. But we left that day thinking that it was time to make final arrangements. We left that day and had to tell our kids that Mommy was going to die. Those memories burn and form permanent grooves in your brain that play like a record again and again in your mind.

I didn’t feel nervous until I entered this room. And then everything fell on me at like an overhead compartment after the contents had shifted mid-flight. The longer I waited, the more I began to feel certain that the news today wasn’t going to be good.

The wait today is longer than usual. The radiologist has not finished his report on yesterday’s scans. I hear staff out in the hallway, “Where is Dr. Surgeon? Does he know Stoker is here?” I hope that he is missing because he is tracking down my scans. I try to be patient, knowing that a very long wait is far from the worst thing that can happen today. Two hours past our scheduled appointment time he finally enters the room.

I keep having dreams
Of pioneers and pirate ships and Bob Dylan

Of people wrapped up tight in the things that will kill them
Of being trapped in a lift plunging straight to the bottom
Of open seas and ways of life we’ve forgotten
I keep having dreams

Frank Turner, “I am disappeared”

I had slept for nearly 10 hours the evening before. Something that I never do. Even stranger was the fact that my sleep was solid, without even waking to use the restroom. My dreams had been large as life, vivid. There were castles and evil villains and royalty and battles for power. When my husband finally woke me, I didn’t want to get out of bed so I rolled over to snuggle with him instead. I breathe in his scent. If comfort could be bottled, this is what it would smell like.

He was already nervous, but I was in a good mood. I lingered in the shower, enjoying the lemon verbena scent of the hotel brand shampoo. I applied my free sample moisturiser from Sephora that told me that I was getting moisture “straight from the clouds.” At breakfast, everything tasted better than usual. The latte, so creamy. The fruit, so sweet and rich. The bacon, so thick and crispy. I savored every bite whilst looking across at the worried line in the center of my husband’s forehead.

I used to think intuition was a myth. I am a firm believer in it now. My brain knew before I did that today everything was going to fall apart. “Take a deep breath” it said, “savor these last moments. Enjoy this sense of peace.”

The radiologist has not yet reviewed the scans and submitted the report, but I had a chance to look at them, and it appears that there is some progression in the liver. I blink, trying to process what he had just said. The CT locally had noted a few smaller tumors that maybe weren’t definitively seen on the prior report. My oncologist locally had told me not to worry about them: “they probably just weren’t picked up on the prior scan due to positioning, but I wouldn’t worry about them. Your largest tumors are unchanged in size, so everything looks stable, everything looks good.”

“So, my understanding was that all of my tumors except for one were in the right lobe. Wouldn’t it be possible to re-sect the right lobe and then simply ablate what is left in the left?” Uh no, here look at your scans- you see the tumors here, it would be difficult for me to ablate those and remove all of the disease. And of course, you know that you have disease outside the liver… surgery wouldn’t do you any good.

Last April, he told me that he had removed 19 masses from my liver. My largest tumor now is actually one of only a couple that he did miss during that surgery, despite it being larger than a centimeter at the time. Because of that surgery, I don’t have nearly the same amount of tumor burden now as I did then. Why was I operable a year ago, but not now? I think it, but don’t say it. If he had told me I wasn’t operable because of progression, that would make more sense… Maybe once I actually get to see the written report all of this will be clearer. We leave the office and head to another building to the oncology appointment we are now two hours late for.

I see that your CT from two weeks ago showed a mass near your uterus? Of course, I know what she is referring to. It’s the same thing that I had seen and freaked out about. My local oncologist soothed me back on that as well: “when they took the last tumor out, something had to fill that space. It isn’t solid, just fluid. I wouldn’t worry about it.”

I haven’t seen your scans from yesterday, but I think that it is very likely that cystic mass is malignant, given your history. Of course she does. Of course it is. I knew it even before she said it. We discuss the small hope that the progression occurred while I was off chemo, especially since my tumor markers have stayed stable since then. But more likely? I have failed FOLFIRI. The plan now is to stay with FOLFIRI for a few more sessions and in the meantime, begin to look for trials.

She looks up and writes down several trials that she thinks that I should look into. One of them might have an arm at the Clinic. She will call and ask about the whether the arm at the clinic is open and call me tomorrow about it. That this doctor has a list of trials to suggest to me and will make this one call makes me very grateful that I am seeing her. The majority of oncologists would just tell me to start looking into trials and then leave the room. The rest, I know, will still be up to me. To reach out to the Principal Investigator. To request and collect all of the documentation needed and provide it. To jump through all of the hoops. I am grateful for all of the help and advocacy I can get.

I walk out shell-shocked. I know what failing FOLFIRI means. It means that I’ve officially begun the very final story arc that leads to the end. I will have to begin trials without having a stable chemo option to fall back on except for third (and last) line treatment. The roller coaster ride has now become the type where you stand in an elevator and wait for it to free-fall several floors beneath you.

The three-and-a-half hour drive home is brutal. My stomach hurts. My head hurts. The setting sun is directly in my eyes. Exhaustion wraps around me like a shroud. I am tired of fighting.

In this moment, I am tired of fighting for doctors to be as proactive as I had pictures them to be before I got cancer. Instead, most are overworked and busy and flying by the seats of their pants. I am tired of being spun an over-optimistic narrative about my scans and unsteady assurances that will only break as I get further down the bridge. Perhaps they believe that the optimism will transfer over to reality, but but these fair-weather tales do nothing but lead me quietly down the primrose path to death. They also help with avoiding all of the uncomfortable patient emotions until the last possible minute. I wish that I didn’t have to see that simultaneous look of pity and distancing when they do tell me the news is bad. I’m just… tired. I wear it all over my face and body. My husband can see it as I curl up in the seat next to him. From the drivers’ seat he yells at me to not give up.

Silently, I hope that the tired and numbness will fade and transition over to anger. I know that I will need the anger to energize me so that I can begin navigating the choppy waters of clinical trials. But right now I need a moment. Because today everything got sharply real. Today death suddenly became a potentially near-term event. I hoped beyond hope that I could stretch out for years. But instead I am now trapped in an elevator that is now plunging straight to the bottom.

Arriving home, I eat for the first time since breakfast. I hug all of my kids. I snuggle my son to sleep. I try not to cry, not to alarm them. And then I crawl into bed and assume the fetal position. Nine hours later, my son is in my bed waking me up. Once again, I haven’t stirred during the night, but this time I remember nothing about my dreams. I am heavy, and opening my eyes and getting out of bed seems impossible. But I do it anyway, because my son needs my help getting ready for school, to keep him on task and to set the mood for the day. My dying will crush him. He is not emotionally mature enough to cope with this. This is so wrong! So very, very unfair.

But I know that life was never given to us with a fairness guarantee. I will have to leave him, whether he’s ready or not. I will have to leave my husband too. But first, I will have to put on his shoulders the enormous burden of caring for me while I am sick. That isn’t fair either. I will have to leave my girls- my normal, innocent girls- and force them to grow up to that unfairness of the world far sooner than they should ever have to.

I think about the near-misses. The moments in the past where fate, at one point or another, brought us very close to losing each one of our kids, but didn’t. I think about my 20-foot fall at age 12 where I broke 5 vertebrae in my back but didn’t get paralyzed. I think about mistakes that I’ve made which, by some miracle, I didn’t have to face the worst consequences for. I think about the advantages I had (which most people forget or discard) that helped me to get a well-paying job that turned into a career. I think about how my Dad losing his job in high school ultimately left me starting a new school my senior year of high school where I met my future husband. I think about how- given my upbringing- the deck was stacked against me going to and graduating from college. But I did anyway.

I also think about intuition and warning signs. About how in the months before my diagnosis I told my therapist that I felt like I was just waiting for a shoe to drop to balance out the scales after all of those past near-misses. I think about how I told my co-workers that neither of my biological parents lived to old age, so I had an unfounded fear that I wouldn’t either.

It was never “owed” to me that I was going to grow old with my husband. That we would be empty-nesters and watch our children become adults. That we would travel and see the world together. That I would hold a grandchild in my arms. It was never even owed to me that I would live for years after my diagnosis. But I still hoped that I would. I ache with resentment that I burned through my only two first and second line treatment options before I even hit 18-months past diagnosis.

I still want to scream from the rafters, “I was supposed to grow old!” That I was supposed to at least have a chance to see my middle child start high school. I still feel bitter about always being the youngest person at the chemo center. I still roll my eyes at people complaining about old age. I still feel sad when someone casually says that they “can’t wait” for an event a full year in the future when I am sitting across from them at the table and have a decent likelihood of not even being alive by then.

It’s irrational, but it’s real. And maybe it’s also good for me. Maybe it’s the anger that I need to get back up and out of bed and to make my life as vivid as the dreams that I have been having lately. To make this final arc and this very final chapter, as long and as fulfilling as I still still have the power to make it.