Holidays

“Spent 18 hours waiting stoned for space
I spent the same 18 hours in the same damn place
I’m on a road shaped like a figure 8
I drove around for hours, I drove around for days
I drove around for months and years and never went no place”

Modest Mouse, “Interstate 8”

It’s pavlovian, really. Wake up. Roll over. Check pain level. Take morning morphine. Did I sweat through my clothes last night? (thank you, early menopause!) Redress if needed. And then.. pick up phone. I’m less than five minutes into my day, and I am already on social media trying to to assess what I “missed” while I was sleeping.

I click the big blue button with the F on it and the first thing that pops up for me is another “on this day” reminder. We used to be able to escape the sins of our past. Now they come back to us every year on their anniversary. Ah yes. There’s the one, from six, five years ago (?) where I posted a picture of the vast parking lot at the large complex where I worked. It was completely empty except for maybe 6-7 cars. My team. Working on a federal holiday. Spun up on a false emergency. Sacrificing precious time with my family in order to make a date some higher up had promised to his superiors.

There were no other details, aside from a sparsely populated parking lot and a humble brag about working on a holiday. Meanwhile, the hundreds of other people who worked in that complex were home celebrating with their family, and enjoying sides of themselves not aligned with work. And yes, I used the word “brag.” I was working on something so important that I was at work while everyone else lazed away. Where else, but in America do we consider ourselves “better” because we work more? Perhaps Japan? Who knows.

I swipe away and off of Facebook to my email. I have a notification from my online journal. “Two years ago, you wrote…” Two years ago. That was my last summer before my surprise diagnosis on labor day. Work was… how should I describe it? Some version of hell? Believe it or not, I was STILL working on the same project at work that had required such a time crises years earlier. We had to start over due to new requirements, and in our second run had fallen into several delays, which could have been prevented, except that I had been disallowed from speaking up and being direct about the issues I was seeing. It was made clear that I was to “let them manage their own program” and not say no to anything or suggest a different way of doing things, lest I come across as too negative. At this point, I was basically trapped and unable to leave because nobody else wanted to touch the project with a ten-foot pole.

July 4th, 2018. I feel trapped. Trapped by the mind.  By obligations.  By limits.  By people that I can’t escape.  By talents that I cannot share.  By a blocked sense of purpose.  I feel cuffed to my job, and void of all passion for it.

July 5th, 2018. I realized today that I am not okay.  I am not okay with any of it.  I had to give myself a pep talk just to get out of my car this morning. I felt so heavy coming up the stairs and it was hard to breathe. I don’t feel confident at all that it is going to get any better.  All that I can do now is take one breath, one step at a time.  I have to trust that the right answer will eventually show itself, and that this challenge is part of a greater purpose for me. I just can’t see it yet.

Back in those days, I would often insert a pep talk to myself when I journaled about my frustrations at work. “This is all just another challenge for you to overcome that you will ultimately be better off for having experienced” came up quite often. Of course, at that time, I still had decades sprawled out before me both in my career, and in my life. A couple of years could surely be sacrificed to the larger goal of “growth.”

The pep talk wasn’t enough, because either later that day or the next, I recall that I completely lost it in private at work. Sitting at my desk, I felt like the walls were caving in on me and I just had to get out of there to a place where I could just release the sobs alongside ugly, snotty tears. A random guy I didn’t even know found my hiding spot and asked me if I was okay. I could only shake my head to get him to leave. He was brief oasis of humanity and empathy in a dessert dry of it.

I returned to my desk, red eyed and splotchy and pretended to quietly get back to work. It was pretty obvious that I had been crying, but nobody said a single word. Most likely, they probably didn’t even know what to do at that point. My functional team was just as trapped as I was, and those that weren’t on my finctional team were either burned out or just flat nasty and toxic. All of it a product of the poor leadership and the systemically toxic culture that had brought us to that point to begin with. By the following week, I had a chance to to go spend a few days in the office I was set to move to next… a brief respite amongst real humans again before being called back to the first office indefinitely and to once more put in copious amounts of overtime in in order to bring it to closure.

Yes, memories. Aren’t they grand? Memories of wasted time, wasted purpose, wasted talent, wasted investment, wasted emotions, and ultimately wasted health. My wasted health. As the song at the beginning states, I drove around for hours, days, months and years, “but I never went no place.” What I thought was on a long, treacherous hike, from which I would emerge victorious was actually just a pit of quicksand. Every time I tried to fix things or solve problems, the backlash got worse and I just got deeper and further stuck from the struggle.

Two years ago. Close enough to remember like yesterday, but far enough to seem like a whole lifetime ago. I check in often with the people that I used to work with through my career who I call friends. I hear a story of someone feeling like they NEED to go into work on a weekend because their boss threw them under the bus. And now, all of their weekend joy has been sucked dry to the extent they couldn’t even think of anything else but work. They decide that they need to go work the weekend in order to assemble evidence to try to recover their “reputation”. Meanwhile, most likely the offending boss was at home enjoying their weekend just fine and not even thinking of it.

My brain SCREAMS nonononononononono!

I want to tell them that if they feel that their “reputation” is damaged just because of something someone above them said about them, that the problem lies with the organization, it’s culture, and it’s leadership, NOT with you:

– It hasn’t taken the time to get to know you as a person, your skills or your character.

-It hasn’t taken the time to get to know your boss and his true colors or character (or, they have but just don’t care anymore because he has reached a certain level where he is no longer accountable).

In either or both scenarios, it will never be worth it to give up your peace of mind to impress a leadership chain whose vision is so shallow. It’s a sign of an organization that values braggable results over getting to know about, investing in, or caring for its people. I want to tell this person that it will never be worth it to sacrifice your time or happiness to impress people who don’t give a damn about you, get to know you, or ask your side to begin with. Spoiler alert: if they don’t care about you now they won’t give a damn about you when all of this is over, either. The only thing worth investing your time and energy into at this point is getting out, and finding a place to work that is better.

Of course it’s much easier for a person to understand that conceptually than it is to convince their heart, which feels it has been wronged, from assembling the troops and throwing them into full fix-it mode. I just hope, with love, that this person escapes before they suffer from or discover a medical consequence that they should have directed their energy toward or focusing on instead.

By the time I was able to move on to my new office on a permanent basis, I was unfortunately only there a month before I ended up in the hospital for complications associated with a giant tumor in my sigmoid colon, that I would later learn had metastasized. And when I returned? I was amongst people who cared, and who saw me as and treated me like a real person for the first time in what felt like forever.

I didn’t want to stop working. My career was such a huge part of my personal identity for nearly two decades. It takes a while for that engine to just stop. It takes a while for the words, “You are dying. You can stop doing this now” to infiltrate through. It finally took a shock/scare event with my initially cancelled HIPEC surgery for it to finally set in. The inner voice started saying, loudly, “You might not have long. Get out and enjoy this time with your family while you can. ” So I did. Even then, I was nothing short of I was blown away by the support I had at work. My supervisor went above and beyond to help keep my disability and other paperwork quickly moving. I was overwhelmed by the generosity of others, whom I had worked with over the years. And the culture differences between the first office and the second were so stark, it was like night and day.

It’s now been sixteen months since I walked into an office building to work, and my former supervisor still checks in, every few months, just to see how I am doing. Not because he will get brownie points for doing so, but because he is a good person. Sixteen months which have now become the retirement I was supposed to have twenty years from now, except of course much shorter and which have been filled with surgeries, chemo and doctors’ appointments.

I am still going “nowhere” but of course in a much different way. All directions lead to death, so I will take a stroll around that figure eight as many times as I possibly can before my engine dies. And, aside from all of the pain and chemo and procedures and existential dread, I am probably happier than I have been in my life. I am 100% myself these days, and live life without a filter or other restraints. COVID 19, as terrible as it is has brought my family back home to me, so that I have been able to spend more time with them than I ever have in my life. And I am loving it.

Time, time, time, and so little of it spent with the people that we love the most. So little of it spent doing the things that we love the most. So little time doing the things that we are drawn to, that give us purpose, that make all of the tiny changes that we are each bound to leave behind when we leave. We save it for another time. Perhaps when we are retired (assuming we’ll live that long)? Perhaps on the weekend? Perhaps on a holiday?

But then we give those things away too, don’t we? To impress the boss. To humble brag about how mich we are working. To receive accolades for giving the most of our lives away in the name of making ourselves (or maybe our bosses?) look better.

I can’t tell you to stop it. But I will say that I am designing my gravestone right now, and it isn’t going to have a single thing on it about work.

I hope that each and every one of you were able to enjoy your July 4th holiday, and that you were able to spend quality, loving time within your coquarantined families. ❤️

Writing in the Ghosts

know you’re living in my mind
It’s not the same as being alive
I know you’re living in my mind
It’s not the same as being alive

Supersymmetry
Supersymmetry

If telling the truth is not polite
Then I guess you’ll have to fight
If telling the truth is not polite
Then I guess we’ll have to fight

Supersymmetry
Supersymmetry

I lived for a year, in the bed by the window
Reading books, better than memories
Wanna feel the seasons passing
Wanna feel the spring

Of supersymmetry

It’s been a while since I’ve been to see you
I don’t know where, but you’re not with me
Heard a voice, like an echo
But it came from me

-Arcade Fire, “Supersymmetry”

My recent blog post titled, “The Little Blue House” may have seemed out of place to some. If you didn’t read it, don’t sweat it. It was very long, very honest, and very personal. It wasn’t about something unique to the cancer experience, but I wrote it from a terminal perspective. I just happened to have a memory from the year I wrote about pop up one day and it suddenly struck me:

If I don’t write about that year and what it meant to me, it will soon just… disappear… As if it had never even existed at all.

But it did exist. In fact, it was a very defining year for me growing up. The “story of my life” just wouldn’t quite be complete without this chapter. So I wrote about it. Maybe I will get around to organizing this haphazard mess that I call my blog sometime while I am still capable to do so. Probably not. But everything that I’ve placed into this wordy and occasionally beautiful blog captures a piece of what made me who I am today, and/or contributes to how I am processing what lies before me now, but which will someday just be a part of all of your distant pasts.

I am not by any means any more special than the unique self of everyone who stopped in to read parts of this blog. Nor is my story particularly more special or interesting than anyone else’s. But it is still the story of a person. My story. And as such, it deserves to be captured. Let the thoughts, and memories exist beyond me, somewhere for a little bit longer. I existed. I tried. I failed. I grew. And I loved so very deeply.

Everyone will die someday, so everyone should do this. And if, unlike me, your story is only half-written? You should especially do this. Just start writing. You will find that the more you type, the more you will begin to discover certain recurring events that define who your character is today. And in so doing, it may become clear to you what you need to overcome, or change, or shift, or… whatever in order to make the second half of your book, and life, as fulfilling as it can be.

In my writing thus far, here are the themes that have kept coming up for me:

1) One of the most damaging things that can be done to a child is to rob them of unconditional love. Both my brother and I were robbed of this in the earliest years of our bio parents’ marriage, but he bore the worst brunt and was abused on top of it. I saw the extent of the damage this did to my brother, psychologically, and I could never really bring myself to hate or be angry with him even though there were some occasions that he took this out on me. I cannot write about these earliest years, because I was too young to remember them, but I can write about the years after that, which I do remember. I remember my first experiences with unconditional love, with my step-dad (who became my Dad) and his parents and how those saved me. Living through these lessons defines who I am as a parent more than any other thing. Attempting to punish away a child’s struggles doesn’t work. Only love. Only love works. The cycle stopped with me. That is part of my story.

2) You can’t rely on authority or the “adults” in the room to do the right thing. You have to take care of yourself. Growing up, very few adults told me that I could do great things. I was always “surprising” people. I learned how to work hard and take care of myself, only to hit the wall of learning that the world was no different than high school. Popularity was still more important than merit, and the system was built to work against certain people (or groups of people). I developed a strong internal locus, where I felt it was on me to “fix” everything. Only to have to learn at the end that there are some things that you just can’t fix. I had to unlearn a core part of myself and relearn how to “let go” and “accept” instead.

3) Authenticity is the enemy in our school, work, and other social environments, and it is bleeding our collective souls dry. I hid mine away until I reached a point in my career where I felt that it was time for me to use my unique self and talents, only to be told to shut up, put them away and nod my head instead. I found myself trapped in a place where I was expected to squash my talents and do nothing at all, all the while being gas-lighted that my concerns were. The experience tore me down in so many ways that I believe that I ignored symptoms, and had my illness accelerated because of it. I look around and I see so many other people- especially those around my age- drowning in stress and unhappiness and trying to gain approval from a system that’s designed to suck them dry. They too, are having health issues. I want to scream at them that life is too short to sacrifice your health and happiness to work. If you find yourself in a situation where you are the enemy just by sharing your talents and being yourself, it’s time to move on.

4) Perfection is a poison that sickens everyone who goes near it. It poisoned just about everyone on my mother’s side of the family with alcoholism. My mom added anorexia and bulimia to the mix, and was rotten to the core both physically and psychologically by her fifties. Severe Osteoporosis, Anemia, Cirrhosis of the liver… I teach my kids to focus on being the best version of themselves, and to seek to do the right thing and that everything else will fall into place. The cycle stopped with me, and that is a part of my story.

5) All suffering is caused by expectations that aren’t fulfilled. I watched my mother die by the slowest suicide ever. Decades of drinking, not eating, taking laxatives and feeling sorry for herself and thinking that the world was unfair because it didn’t unfold the way she had envisioned it. Her husband and kids fell short of expectations. She wasn’t as wealthy as she wanted to be, etc. As a result, she missed out on decades of joy and destroyed all of her outward beauty. In her last year of life she was seen looking at photos of her (so incredibly beautiful) younger self and saying out loud “I was so beautiful. Why couldn’t I ever see it?” It’s such a heartbreakingly sad story. I sometimes feel guilty for bringing it up so often in this blog. Can’t I just forgive her and move on? Yes I can, actually. I am ready. But in order to get there, I had to first tell her story, and write her ghost. Because she was my mom- my person zero– her story has always haunted mine.

6) Religious institutions, and people with religious motives cannot be fully trusted. This is the only overarching theme that I have to admit is filled with bias. But when you see my history written out, you begin to understand how I got here. I started out attending church with my Mom because that was what I was “supposed” to do, and then proceeded to have encounter after encounter of false religiosity that ended up turning me away from it with a bad taste in my mouth. I’ve had some growth in the opposite direction in the past two years. I’ve seen very honest religiosity. I’ve seen big hearts and honest, intentional prayers, and I’ve finally developed a kind of religious/spirituality of my own through it all.

I am grateful to everyone who has had the patience to watch me write these stories. I am so very grateful for having had the time and this space to write them. I am getting very close to the ending now. All that remains are some scribbled messages to say goodbye, some shaking of hands, and some long overdue hugging of ghosts.

The Little Blue House

I think the kids are in trouble
I do not know what all the troubles are for
Give them ice for their fevers
You’re the only thing I ever want anymore
Live on coffee and flowers
And try not to wonder what the weather will be
I figured out what we’re missing
I tell you miserable things after you are asleep

Now we’ll leave the Silver City
‘Cause all the silver girls
Gave us black dreams
Leave the Silver City
‘Cause all the silver girls
Everything means everything

It’s a Hollywood summer
You’ll never believe the shitty thoughts I think
Meet our friends out for dinner
When I said what I said, I didn’t mean anything
We belong in a movie
Try to hold it together until our friends are gone
We should swim in a fountain
Do not want to disappoint anyone

I’m a confident liar
Have my head in the oven so you’ll know where I’ll be
I try to be more romantic
I want to believe in everything you believe
If I was less than amazing
I do not know what all the troubles are for
Fall asleep in your branches
You’re the only thing I ever want anymore

I was afraid
I’d eat your brains
I was afraid
I’d eat your brains
‘Cause I’m evil
‘Cause I’m evil
‘Cause I’m evil

-The National, “Conversation 16”

We moved into the little blue house during the summer before my fifth grade year. It resided in the Tacoma, WA suburb of Puyallup. We moved there from Kettering, Ohio when my Dad accepted a job with Boeing. In many ways, he took the job to please my mother. Home, to her, was back to live near my grandparents, who had retired to Spokane, WA. And please her, he did. A few years after her remarriage she was eager for a fresh start, in a pretty little house, just a short six hour drive across the cascade mountains to the eastern side of Washington State.

Our little blue house backed up to the track of Puyallup Junior High. It was where my brother went to school and where, of course, was already making an infamous name for himself. At the time, we had a small yard, and two basset hounds, Belvedere and Beefeater (the significance of these names lost on me at the time), who would bark in an enthusiastic and friendly manner at all of the teenagers who came running past. I could walk from my house to Maplewood elementary in less than fifteen minutes. You could walk to just about anywhere in Puyallup in under twenty minutes those days. Well, anywhere except for the South Hill neighborhood where all of the super rich people lived. We lived near the downtown area and near the schools. Directly across from the cul de sac where we lived, there were a set of train tracks, and we could hear the trains rushing by several times a day.

We were the last couple of upper middle class houses before reaching the “poor neighborhood,” which began mmediately across the tracks, just like you would expect to read about in any coming-of-age novel set in the 1950s. My brother and I used to sneak across and place pennies on the tracks, before running and hiding and letting the oncoming trains fling them off. It was fun, and it gave us a cool collection of warped and burned currency to show off. The trains would also make our pretty little blue house shake, but I got used to it. On most days we hardly even noticed.

The weather in Puyallup was grey and cloudy all winter, and blue and sunny all summer. Summer temperatures were perfection. I remember thinking it cool that we could crawl outside of our windows and walk along the roof, or simply sit and watch in awe the view of the giant mountain plastered against the sky. In spring and summer, the clouds flew away and you could see only Mount Rainer, with a white cap just like a painting, against the cerulean blue backdrop of the sky.

Our time in Puyallup only lasted for a little past a year, but it was the last year of my childhood before entering the “tween” years. And before having to begin, yet again, in another school district in another town. It was in Puyallup, that I remember pulling my step-dad aside to share with him something that had been on my mind for some time, but which I had been very anxious to express. “Steve?… is it okay if I start to call you ‘Dad’ from now on?” “Sure, kiddo,” he said, quite seriously and trying very hard not to show a smile, “I think that I would very much like for you to call me that. “

Puyallup was supposed to be another new start for us. We all dusted ourselves off a bit and tried to play the role of the family that we dreamed we could be. Dad started wearing suits, something he despised, to align with his new work culture, and went away on long business trips.

During these times Mom would take to sunbathing naked on the roof and gushing about how she had heard that the pilots had a map of women who did this and that she was probably on it. She spruced up the house, both inside and out, and that year became an avid gardener- doing whatever she could to make our pretty little blue house prettier. For my brother “M,” it was also supposed to be a chance to clear his growing record of outbursts at school.

Our next door neighbors just happened to be Lutherans (ELCA), just like my Mother. The W’s. The W’s dad was a used car dealer, and the W’s mom was always prim and proper, wearing dresses on a Tuesday. They invited my mother and I into the church, and introduced us around to everyone in their Sunday best. I was already becoming an adept student in body language, so it didn’t take me a very long time to figure stuff out and to put all of the things in their place. We were a charity case. “Look at this “unfortunate family” we brought into the church, Dear! We will get extra mana in Heaven for this!” After the first six months, you could tell that the project was getting a little tiresome and they began to drift away.

I never could put my finger on the “why” we were the charity case. Perhaps it was my loud, dorky (and ::gasp:: atheistic!) Dad in his Holy Seahawks or Bengals football jersey out monitoring the above-ground pool (with a deck built around) on church Sundays. Or perhaps it was my brother, who came home from school on the regular with demerits and detentions due to outbursts. It could have been a combination of all of those things, plus the realization, in retrospect, that it could have been the family arguments at night, which likely floated out to our neighbors’ ears on a fairly regular basis. These were mostly driven by my brother getting in trouble, and my Dad’s employment of power lectures with a booming voice. He thought he could cure by rational argument what could only be treated with the help of a psychologist and strict use of medication. By that point, at least one psychologist had already used the term “borderline personality disorder” to describe “M”. But the Bi-polar Disorder (BPD) diagnosis was still yet to come.

The “W”s next door had two daughters, and the oldest, “R” was in the same grade as me at Maplewood Elementary. She was assigned to me as if I were her pet. It was a mutually beneficial relationship. Her job was to introduce me to the school and to become a default “friend.” My job was to follow her around in adulation and to praise everything that she did as “genius” just like the adults always did. She played the piano. She sang and wrote songs. She was even writing a children’s book about a dog that she was sending to publishing companies!

Well I’d never been trained on the piano, and I’d never been trained to sing. The writing part looked like a lot of fun though. I read “R”‘s story, and thought, “…well everyone else thinks this is great!” It was okay, but I was already deep into reading by this age and honestly believed that I probably could have done a better job if I actually sat down and put some effort into it. But I didn’t really seriously bother. I would either be bad, and I would be laughed at and pitied, or even worse, be really good and catch the ire of jealousy and retribution for trying to compete with the golden one.

Mom may also figured out that we were charity, but she never outwardly said anything to me. She just continued to work on the garden, and go to church, and to host super bowl parties (since we had a big screen TV) in tight jeans. In high school, she saw her only value as her looks. She went to college to “Get her MRS” degree, and then got spontaneous and married the first sociopathic, “handsome” man that her father introduced her too. Having that marriage turn co-dependent and abusive, getting a divorce, and then living in poverty because my father refused child support and she refused public assistance were all deeply shameful things that had befallen her. First she dated Daryl, a red-necked redhead, and then she dated my Dad (who I had noticed was different from the start), before finally getting married. Then “M” started having trouble in school… Puyallup, for her, was a chance to wash away all of that and regain favor as the oldest and, she hoped, “most loved” of her siblings. She loved being the suburban housewife with a successful husband, kids in school, and her own Mommy and Daddy within reach whenever she needed them. She was the closest thing to happy in Puyallup as I had ever seen her at before or after that period.

I wanted Puyallup to work too. I wanted it to “fix” whatever it was that was wrong. That thing that I could never quite put my finger on. I seemed always out of place in a world where everyone knew the rules except for me. Not wanting to upset anyone, I more or less disappeared into a sort of nothing, really, at all. I felt smart, especially in certain areas, but nobody seemed to expect much of me and I didn’t want to stick out or be too showy. I did know that some things did seem better since Mom and Steve got married. Something changed, but I was unable to articulate what. This was also before I discovered really good music, so I mostly sat in my room or toured the garden and came up with fantasy stories about how I was going to grow up and “show them all” once everything finally clicked. Until then, I just played my usual part of the child who was not good enough for Mom to brag about with others, but still at least better than my brother. And I kept my head down.

So that brings me to May of 89. But it wasn’t just any day in May. It was Mother’s Day. I had figured out the importance of the day just that morning, when I flipped on my boom box. I processed the phrase around in my head a couple of time, before saying it out loud. Mother’s Day. Had I even done anything for my mother? Nope. I hadn’t. Nothing at all. What the heck was wrong with me, that I hadn’t planned anything for my mom? I had done something wrong. So it was on me to fix this.

“Mom!” I want to go walking to downtown? Is that okay? “Uh sure, just be back by…” I could hear her in her room. She was busy with folding laundry, or watching a show on Lifetime or something. I ran out if the house with twenty-or-so dollars I had saved up in allowance money and headed happily out for downtown. While there, I found a trinket, and some candy, and a card, and.. what the heck- I want that giant mylar”Happy Mother’s Day” balloon too.

I had spent everything that I had, but I didn’t care. I was so happy! And mom was going to be happy that I had gotten all of this stuff for her! I pushed the button on the crosswalk, and lady at the intersection rolled down her car window to tell me, “your Mother is a very lucky mother indeed, sweetheart.” That was a good sign. This was the right thing. My heart thumped in my chest. Today was going to be a good day.

I arrived home and went to go seek out Mom again before I was caught with the gifts. I went to my room to arrange them for presentation before walking across the hall to knock on hers, which was closed and locked. “Um, mom, can I come in?” I knocked again.

Heather, WHAT is SO important!” she yelled in the exasperated tone that she seemed to always have ready for me before stomping to the door and slamming it open. She, of course, saw me there with everything that I had gotten. I saw her process and force herself to begrudgingly readjust. “Oh, what’s this?” I quietly showed her everything that I had gotten for her. I tried to guess what she was thinking. There was definitely surprise, and maybe even a touch of sentimentality? But there was also annoyance. I seemed to always be annoying her. She covered quickly. “Oh, um that’s nice honey, thank you” came the almost hallow response, followed up with a mechanical hug. She wasn’t now, and had never been, a hugger. It felt like alligator skin draped over a favorite stuffed animal.

I left the room feeling both crestfallen and confused. Mom had said thank you. She had even given me a hug. What else was I expecting, anyway? Why on earth did I feel so… disappointed? Sad? I couldn’t find the answer, so I dejectedly went down to the garden to think a bit as I would often do around that time. The heart and mind strings of children are always bound to be pulled by the hands of others. At that time, I was still lacking the perspective to compare the world as it existed for me against anything else. And, with no other apparent solution, I deduced that I had somehow, once again, unknowingly done something wrong.

I spent so much of my childhood walking around on eggshells. Trying to keep things stable. Trying to keep Mom happy. Trying to blend into the background. All the while feeling like something was wrong, but having nothing to point to to say, “There. That’s what it is. That’s what is wrong.” At least not until I was older.

By the end of my fifth grade year, Dad announced that he had accepted a job back in Dayton Ohio. Maybe it was that news that was stirring in my Mom’s brain on Mother’s Day. I guess that I will never know. What Dad didn’t say to me at the time, but I found out later was that Boeing was never the right job for him to begin with. He had spruced himself up and put on the costume, but he could never convince himself, let alone others, that he really belonged in it. The opportunity to go back to a place where he could feel back in his element again for more pay was just too much for him to pass up. Important enough that he took my mother away from her little blue house. And she almost filed for divorce from him over it.

Our last summer there, my parents agreed to send me to Miracle Ranch (Christian Camp) with “R” for most of summer, and bought a plane ticket to send my brother to live with my bio-dad’s parents for that same period.  Looking back, I realize that this must have been a pretty quiet summer for my parents.  Boxed wine and gardening for my mother, and perhaps a trip to Camano Island in the San Juan Islands, before my Dad headed back to Ohio to begin working and find us a new house.

We said goodbye to the little blue house, and to everything else that we had thought that it meant for us. I began sixth grade as the “new kid” in another new school system. But our problems didn’t go away. My brother’s mental illness and associated behavior escalated to the point that my parents had to remove him from our home altogether. Mom got sadder and sadder, and she began drinking more and more. And I kept trying to tread water and trying to ask as little of my parents’ attention as possible. I didn’t mourn the little blue house, because it was never real, anyway. It was all just a facade. Like garden weeds that we kept picking because we forgot to apply weed killer. Or the peeling of another coat of fresh paint over rotted wood.

The Passenger’s Seat

I roll the window down

And then begin to breathe in

The darkest country road

And the strong scent of evergreen

From the passenger seat as

You are driving me home

Then looking upwards

I strain my eyes and try

To tell the difference between

Shooting stars and satellites

From the passenger seat as

You are driving me home

“Do they collide?” I ask

And you smile

With my feet on the dash

The world doesn’t matter

When you feel embarrassed

Then I’ll be your pride

If you need directions

Then I’ll be the guide

For all time

For all time

Death Cab For Cutie, “The Passenger Seat”

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

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

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

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

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

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

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

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

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

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

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

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

Dancing For Two of Us

Let us remember to love,

I you

and you me,

and we will rise above ourselves

and Time

Know us for what we are—

miracles that build fires from timbers in winter.

Let us.

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

You’ll live to dance another day,

It’s just now you’ll have to dance,

for the two of us,

So stop looking so damn depressed

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

Frank Turner, “Long Live the Queen”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Losing Exits

I’m out of my mind

Think you can wait?

I’m way off the line

Think you can wait?

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

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

The National, “Think You Can Wait’

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

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

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

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

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

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

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

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

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

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

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

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

And some next steps to decide on tomorrow.

Missing the Boat

Looking towards the future, we were begging for the past

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

Oh, please just last.

Everyone’s unhappy, everyone’s ashamed

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

Well, nothing ever went quite exactly as we planned

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

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

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

Than the sound of life’s sweet bells.

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

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

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

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

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

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

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

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

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

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

Oh, what useless tools, ourselves

Modest Mouse, “Missed the Boat”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Walking Through Windows

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

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

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

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

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

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

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

– The National, “Graceless”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Forty-Two Years

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

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

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

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

Modest Mouse, “Ocean Breathes Salty”

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

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

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

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

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

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

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

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

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

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

The Funk

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

– Modest Mouse, “The View”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I said something but I didn’t mean it

Everyone’s life ends but no one ever completes it

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

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