Shades of Gold and Yellow

Nature’s first green is gold,

Her hardest hue to hold.

Her early leaf’s a flower;

But only so an hour.

Then leaf subsides to leaf.

So Eden sank to grief,

So dawn goes down to day.

Nothing gold can stay

Robert Frost, “Nothing Gold Can Stay”

My twelve-year-old loves a soft, golden, yellow. The lemon-yellow of sunrise and daffodils of spring. She loves the crisp newness of it all. She is not alone. When yellow is brought to mind, most people think of these kinds of shades. Bright golden yellows to lift us up from the darkness of sleep. The energy of reaching midday. Of the apex of youth, and sand and beach balls, and of bright yellow umbrellas. We don’t usually think about the darker, or the dull shades of yellows. Just like death itself, we aren’t keen to think about those colors because they hint at what comes next.

We don’t want to see the part where matires first golden, green leaf, inevitably subsides to dried, crumbling, yellow leaf. We don’t want to think about what happens next. When dawn becomes decay and beach blankets become old sweaters to snuggle in with the cooler weather. These things must inevitably happen, Frost warns us. Nothing gold can stay, but the yellows, they still remain, adopting sallower tones. Teeth turn yellow. From coffee or cigarettes, or merely from a life spent eating and drinking all of delicious things that the world had to offer us. Corners turn yellow with debris and drains left to themselves. Old papers also yellow, and they accumulate the smell of dust. Papers, now lost in binders and at the bottoms of file cabinets in disarray. Papers that were probably once deemed inescapably important. Were they really? The shade of yellow that comes with sickness also seems to come with a smell. I bet you can smell it now, if you tried. The kind that lingers in the homes and hospitals that harbor it.

Me? I’ve seen the yellows of spring and summer. I’ve seen the dissipating off-yellow hue on each of the children that I brought into the world as well. My last child was born 10 years ago. At which time I jumped into the deep end at the pool woth a full time job, a nursing baby and three kids 5 and younger. But then about two years ago with my diagnosis, someone began infiltrating my spaces with an awful mustard shade of yellow, and no matter how hard I tried to push it back.

One morning, I woke up to find out that I had turned yellow. “Well, I guess that I didn’t see that coming.” Maybe, I should have, since just a couple of days ago, my bilirubin numbers had just jumped, quietly, from way out of nowhere, and the nurse went to check out the whites of my eyes. At that point, I guess that I looked good enough because we proceeded with chemo and then I got sent home like nothing happened. I guess it’s funny what another crazy toxic jolt of chemotherapy and a couple of more days will do.

Another week for a physical exam, more blood work, an X-Ray and a CT and I have a diagnosis of a blockage in the common bile duct of my liver, and an outpatient surgery scheduled to install another stent. I also got no new good news regarding cancer burden. Slight tumor growth in the areas we knew about. A couple more suspicious and and new spots in other areas. 4 tiny xx mm size lung nodules. That “calcified metastatic deposit” on my abdominal wall to the right of my stomach. I can feel this as a lump on the outside of my body, by the way. I am tempted to play with it, but I do not.

Another week after that, and a bit of good news. The stent is actually working (huzzah!) and has as at least drained enough so that my bilirubin count went from 15.7 to 6.6 in 6 days. My skin is definitely still yellow, but more of a paler yellow as opposed to the green-tinted overnight soaked in yellow highlighter that it was before.

So, where to go from here? My oncologist thinks that if my bilirubin keeps dropping like it has, that I should be able to restart chemo treatment as soon as early next week. Third line chemo. The kind that is designed to SLOW growth; not to stop chemo. And which for a good share of patients, doean’t even work at all. But just this week, another possibility popped up. One that I would love to jump on and take a chance with.

But… I still, as of today have the high bilirubin count,. and I am afraid that they are going to reject me outright for. Even though it might be completely gone in four days!!! That’s silly, you might say.. why would they not just wait to see if things line up? Because there are a lot of people who are dying of colon cancer, and so many slots eager for the opportunity. A few days might indeed make the difference between being accepted and being shut out 😥😥😥

Literally begging for the chance for additional life is something that I will never, ever get used to. So let’s hope that this is something that I am building up in my head unnecessarily.

It’s been a tough couple of days, where I accidentally ended up without my extended release pain meds, and OH MY did I notice the difference. Everywhere in my body. But this afternoon, I feel once again more in balance. I am sitting on the front patio watching everyone out on their afternoon walks (something that I would not have been able to do because of pain and lethargy even as recently as this morning). I may not be golden, but that sun is still golden; it mellows a bit and makes a friendly companion to the breeze rolling through. And I have two tiny yellow pills to keep me afloat of the pain and nauseau wanting to sneak their way in tonight. I realize that Eden has not yet sunk to grief in Frost’s world or in mine. I am still alive, and able to enjoy these simple luxuries that other people take for granted.

I know that nothing gold can stay, but the yellows remain. This post diagnosis life is not very much like the bodyneglecting, overworked, and endlessly seeking last one, where my fire was burning hot. Fear, sadness, love, cherishing, and finding peace have all faded it’s bright glory. But a tuscan mellow yellow still hangs in that sky, ready for one winter storm to come along at any moment to knock it down and lets the eternal moonlight take its place.

Jack to the Snack to the…

And in the limp through years of bored schooling

She’s accustomed to hearing that she could never run far

A slipped disc in the spine of community

A bloody curse word in a pedestrian verse

Her heart beats like a breezeblock thrown down the stairs

Her skin is thicker than concrete forced to be brave

She was, she was

A broken elevator anthem held between floors

But if blood is thicker than concrete

All is not lost

Frightened Rabbit, “State Hospital”

To my boy. When I wrote to your oldest sister, I told her that she was the most like me of the three of you. While I am not conceding that as true, I will tell you that when I look at it a different way- in terms of which kid sees the world the most like me? The answer has to be you.

I’ve sung and read past the lyrics at the top of this blog more times than I can articulate. The entire blog has been framed around and inspired by song lyrics; and especially the lyrics written by Frightened Rabbit. Singer Scott Hutchison- mostly about his own personal demons. “State Hospital” is decidedly different in that it is written about not himself, but another character that he could identify with. And he tucked it away somewhere right in the very middle of one of his later albums.

I relate to it because I have been through years of bored schooling where nobody expected me to “run far.” I’ve felt people speak to and treat me like a curse word thrown in a pedestrian verse. I’ve known what it’s like to feel like an anthem, trapped between two floors. Unnoticed. Missing everything, seemingly, by just a half step. Out of place. Misunderstood. And you, my son, have known what that feels like too. I see it in your eyes when I watch you watch the world.

Your parents are partially to blame for not figuring it out at first. But I saw me in you and I wasn’t about to let your path be like my brother’s. I had to break the cycle. So I found out what was wrong and read book after book about how we could help you. Then we did. All of the outrage, loneliness and fear I felt as a child came out of me. And this gigantic roar was built for nothing else but making sure that the elevator was adjusted in every way possible to make sure you stepped off on each and every floor. That you were able to show off the amazing sensitivities and talents that you have and you could share your anthem as loud as your perceived weaknesses.

Your first grade teacher and principal were free to tell us about the “padded rooms” they had available for the bad kids with bad parents who were far easier to label than to help. Where they successfully “other” children into angry places from which they may never return. And the loss? It’s monumental, not just to these kids, but to society as well.

When Daddy and I were thinking of names for you, I wanted something simple and clean and clearly spelled. We lost my Grandpa Jack (itself a nickname for John), while I was pregnant with you and it just seemed… obvious to us at that point that we were going to name you after him. Grandpa Jack (my Dad’s Dad), who looked like and laughed like the Goofy Disney character with his baseball cap and overalls, and who took me in as a granddaughter with open arms because it was “high time the boy settled down and got serious” with a family. The one with a randy military youth himself, before marrying an outspoken, matter-of-fact woman with a huge heart and then settling down for a lifetime as a practical, responsible farmer. Grandpa Jack who aged considerably after the unexpected death of his daughter before him. Not Jack-son. Just Jack. A great starting name. You could be born with that name and pretty much go do and be anything you wanted to go do and be.

An added benefit to your name is that it rhymes with anything. When you have a quirky Mom who makes a song out of everything this leads to seemingly endless verses to the same tune to remind you to do chores and to not forget things. “Jack to the snack to the back-back pack?” For a boy with adhd? Golden.

I admire my ability to churn away the paragraphs on all of this ancillary stuff, and I’m pretty sure that I could keep going for a while. After all, this is the “good stuff” of life, right? And it is, but I avoiding the deep dives on purpose. I am terrified to go to the center and say the things that I need to say to you, because Mommies should never have to say goodbye to their children ever. It’s the same reason that I put off writing yours for last. Because you will always be the “baby” of all of my “babies.” Because I’ve had to protect you the most. Because you are the one who still needs me the most.

You are the one who sees the world like me. I watch you absorbing it. I heard the message loud and clear when at last year’s parent-teacher conference your teacher told me you said “My family has a secret. And everyone is in on it, except for me!!” You don’t want to be whispered around. You want it straight. You want the medical jargon and the details explained to you. The information and the science bring comfort to you. Because you know what’s going on, you talk about in ways that tend to shock other people, but we have decided that it is healthy. It is a real thing that is happening in your life. You have a right to make it real with words. After all, isn’t that basically what I am doing with this blog?

You talk about how much you love me and hug me often (sometimes you add “more than I love Dad” because you are Jack). Every night, you have to snuggle with me before falling asleep. You soak up the snuggles and I soak up the chance to kiss the top of your head and to stroke your hair. We’ve done this since you were little-little and we called you Jack-Jack.

You have always worn your heart on your sleeve. You love your home base and everything in it and don’t want things to ever change. You still mourn our Basset Hounds, even though you were so young when the last one passed away to barely remember them. I don’t want things to change either, buddy. I think Daddy is going to get another Basset after I pass away. Honor the time that you had with Ody and Penny. Go on to love and have new experiences with (a) new pet(s). Go on new adventures with your family and hold your Daddy tight, because he loves you very much and will always do what’s best for you. Yes, sisters are annoying, but they are YOUR sisters (and actually pretty cool). Stoker siblings unite. Forever.

I don’t get to see you at 16, or 21, or 30, or older. And that sucks. because I know that you are going to pull of some amazing surprises and feats for us, but I don’t get to stick around to see what they are. I will have to be grateful that I got to see you at 10. That you are old enough to always be able to remember me, and to remember how very much I loved you.

I get to see a boy, who (like his Mom) is hesitant to give a high review of anything not fully earned. A boy who picks up and uses big words. A boy who responds to this morning’s First Day of School Question- “how was your summer?” with “Well my Mom’s cancer went down and then went back up again, so that was really bad, but on the good side my Dad got me a game called Satisfactory where you get to build factories and try to make them the most efficient. And I got to learn how to build a manifold…”

I see a boy with an inner core of sweetness flanked by a shell of gruffness. A boy who hugs SO BIG, he can knock someone off balance. A boy who runs ahead to open up doors for others. A boy who will argue semantics ad nauseum just to win the argument or get the last word (yes, we are working on this one 😆). A boy who will unabashedly walk up and play with any other kid his age, and then walk away disappointed that he doesn’t have a new friend because he just doesn’t know how to navigate between too forward or too meek and has no idea how to pick up on social cues. You do know how to use your big blue eyes though. And your dimples. Probably too well.

I see a boy, who at ten has already had his first panic attack. Who developed a habit of chewing on his shirts so intensely that he literally had nothing else to wear. I see a boy who every day is trying. You have already overcome so much, and I know that the next blow to come is going to be a very, very hard one. If I could take it away from you, I would. Mommy never, ever wanted to leave you. But I hope that Daddy and I have done and will continue to do everything that you need to prepare you and to let you know that you are not alone. That we are still Stoker strong with new adventures ahead. And that my love for you is so strong, that it’s not going anywhere. It’s going to live in your heart and in ours and you your future home forever. My love lives in your love. And it lives because of the cycle we’ve broken.

The boy that I see now, even at ten, is already a survivor. He is already resilient. You already know that you can make it through tough times and come out stronger for them. You will fight for others who are trying because you will remember what it’s like to try and to not even be given a chance. That sweet center of everything that is you? Don’t ever let anyone take it away from you. It will help you to make the tough, right choices that will prove anyone wrong who might try to label you otherwise. You are your own superpower. And whatever you become will be amazing.

Perfect for You

My wife used to fart when she was nervous, she had all of these idiosyncrocies. She used to fart in her sleep. Sometimes she woke the dog up. One night it was so loud that it woke the dog up. She’d turn around and look at me and say “Is that you!” and I’d say “Yeah.” I didn’t have the heart to tell her.

“She woke herself up?”

Yeah. but Will, I mean it, it’s been two years and this is the sort of stuff I remember. Wonderful stuff like that, that happened. Those are the sort of things I missed the most. Those little idiosyncrocies that only I know about. That’s what made her my wife. Oh, and she had the goods on me too, she knew all of my little peccodillos. People call these things imperfections, but they’re not. Oh, that’s the good stuff. And then we get to choose who we let into our weird little worlds.

– Robin Williams (improvised lines) from the film Good Will Hunting, written by Matt Damon and Ben Affleck

On Tuesday, the news came. My falling tumor markers at the four week mark of my current treatment had somehow reversed direction and doubled again by the 8 week mark. And yes, of course there will be a CT-Scan next week that will provide more clarification, but the overall story seems to want to pressingly say, This is no longer working. The physical and mental breaks are officially over. Time to go back to the hard work of begging for the next thing that can buy me a couple of months. To argue why I am worthy for the trial. That I am worthy of compassionate use. I am forever grateful to have been able to re-attempt FOLFOX. It gave me a summer at home with my family. It even gave me the joys of a full-on vacation that I just took with my husband.

The breakdown came last night. At first the news came like a sprinkling of coal dust, that settled in just over my heart while sitting in my chemo chair in a Benedryl haze. By last night, it started to leak sludge resembling Elmer’s glue. Screw that. By last night it needed to pour. So I poured it out into the arms of my perfect husband.

It’s kind of like when someone rips the surface if a scar that’s never wholly healed. I poured out my grief over the refreshed realization that I will soon have to say goodbye to everything and everyone that I love. To the sweet, sweet smell of my husband and children. To seeing my kids grow up. I poured out the mourning over the unfairness of how I’ve raised my children to this point, but I am robbed from being able to see the rest of their stories. Of watching the conclusion to what amazing people they will grow into. It isn’t fair. It will never be fair. I remind myself that there are people who have had it more tragic. That if I have to say goodbye and fade into some abyss that at least I won’t be alone…

Today, I can feel some energy returning. Although it’s hard to tell, since I still have my chemo pump on. I can get my physical and spiritual energy back. I can process my scans, and what they mean. And I can start scheduling visits with other centers to review the data, I can research trials and other possibilities, and I can find the next thing. Or not. I could move on to Stivarga and go (gently?) into that good night fairly soon after, I would imagine. Of course, that could happen with any next treatment. That’s always the gamble.

When it’s all gone, something carries on..

Frightened Rabbit, “Head Rolls Off”

What carries on for me, now and later, are my family. I will fight tooth and nail to keep all of the people in my tribe; the people who are perfect for me; as close to me as possible, for whatever time I have left.

I was only about 4 years or so old when I clutched onto the leg of a man that my Mom was dating as he tried to escape her room one evening. Apparently, I looked up at him and emphatically said, with my speech impediment and missing teeth, “‘T’evie! Don’t Go!” I didn’t understand then why I wanted him to stay. I just knew that he seemed to like me, that he was really funny, that he had discovered that my feet were ticklish and that he let me rest my head on his tummy when watching a family movie. Also, Mom was happier when he was around. This man was over 30 and a bachelor up to that point who had no concept of what it was like to raise kids. But he liked my Mom, and was ready to settle down and take my brother and I along for the package. In no way, shape or form was this man perfect, but he was exactly what I needed- what our family needed, not just at the time, but through tougher times that would follow. No, he’s NOT the perfect Dad. But he’s the one who came along and chose to love me, when my bio-Dad had jumped ship. And his parents did the same to become my grandparents. I sensed it from the very beginning, that he’s always been the most perfect Dad for me.

My husband appeared in my Senior English class, after I had already given up on high school dating and thought (at least at first) that I would stick with a long-term relationship with my college freshman away in Oregon. The whole story is told at length in this blog, but he sat next to me and we talked. Every day. We had the same cynicism, the same sarcastic humor… it was just the beginning of the discovery that we were soulmates. Both of us, filled with our sets of differing flaws that the other would learn to love and embrace. Both of us imperfect, but perfect for each other.

I was in my late twenties before we had our first child. I was afraid that I would mess it up. I could have been talked out of having kids, or talked into stopping at just one. I could have gone either way. But my husband wanted kids, so we had kids. It was the best thing that I’ve ever done, and the thing that has taught me more than anything else I’ve ever done in life. Just feeling all of the overwhelming, natural love for them was lesson #1. So this is how it feels. But wait… if this is how it does feel, then why was it always so hard to get this feeling from my own mother? Why didn’t it ever feel like she loved me this way.? For the first time ever, I began to figure out that things I had assumed in my childhood as normal, were in fact anything but.

If I am being honest, I always felt the most out of place when my children were babies. Breastfeeding, working, pumping in restroom stalls, picking up and dropping them off at the child care center. They had all of my love, yet at the same time I often felt staggered at the humungous degree of… logistics (?) required just to get 3 kids 5 and under happily and successfully transitioned to the next activity.

It wasn’t until they began to grow older that I started to come into my unique “Mom” identity. The kids started to become their own little people, and I thoroughly enjoyed watching those little people emerge to be the people they would be. It wasn’t my job to change them. It was just my job to coach and steer them into being the best versions of themselves they could be. My third child, my little boy, would prove to be the biggest challenge of them all.

Jack had ADHD, but of course we didn’t know that at first or what that meant. All we knew was that he was acting out. First in preK, then in Kindergarten, and then going into first grade. As bewildered parents, we… punished, thinking that that would solve the problem. We took away privileges. Nothing seemed to work. All I saw was my sweet little boy getting more and more despondent. One morning, I sent him to his room and he looked back at me and said, “I might as well spend my whole day in there, because nothing I do is right.” It broke me. I knew that this boy had a big heart, but felt like it was drifting away. It occurred to me that virtually all my son heard from sunrise to sunset was a barrage of “no!” and “stop!” It occurred to me that maybe he didn’t know how. I imagined what it must feel like to not be able to do better, but getting yelled at for it anyway. It made me feel sad and despondent. I could only imagine what that might be like for a 6-year-old unable to process what “right” even looked like.

A full psychological examination requested through the school district had our answer. Our son was well in the range of having ADHD, and cognitively gifted to boot. When the school went after him in first grade, I was now armed with the tools to get him what he needed. And when a series of events in the classroom led to him having a complete meltdown (for which they suspended him), my gnashing, fanged Momma Bear woke up from a place that I didn’t even know existed.

It was about then that I discovered that I was far from a perfect Mom. I also discovered that I was going to make myself the perfect Mom for my kids. I would be the Mom my kids needed to get them through the bullshit and prejudices that they were bound to encounter through the simple, rebellious act of being themselves in an upper/middle class suburban neighborhood. I now have a thriving fifth grade boy (still not without his challenges), and two very outspoken daughters (in 7th and 9th grade, respectively), who are not afraid to speak out about racism and sexism where they see it. And in the case of my 9th grader? Two parents who gave her complete support when she finally, officially came out. We weren’t particularly surprised and I will continue to be there for her, for as long as I am able to stay to support ALL of the amazing aspects of her life, and her siblings’ lives (sexuality is just one small part of it).

I can keep going. I have a very small, but close group of friends who are there out of sheer tenacity. For breaking through my walls of introversion and then sticking around long enough to get to know the REAL me. And still not rejecting it! Those are the perfect friends for me. I have an extended family through my marriage that just kind of took me in and included me as one of their kids or siblings. Those are the perfect in-laws for me.

All of these people will be here with me at the end. And I know that I am infinitely lucky for all of that. My losses will be mourned, because my losses will NEVER BE FAIR. But my blessings will be counted. All of these people that I’ve let into my weird little world, and who have let me into theirs. They represent all of the good stuff. And all of the love I learned to lean into even though the very thought of losing that same love is unbearable. It’s so powerful that it can’t be lost. So I will leave myself here in their hearts, so that they always feel a part of it, and know that it will never leave them.

For My Bringer of Light

Happiness, hit her like a train on a track
Coming towards her, stuck still no turning back
She hid around corners and she hid under beds
She killed it with kisses and from it she fled
With every bubble she sank with a drink
And washed it away down the kitchen sink

The dog days are over
The dog days are done
The horses are coming so you better run

Run fast for your mother run fast for your father
Run for your children for your sisters and brothers
Leave all your love and your longing behind you
Can’t carry it with you if you want to survive

The dog days are over
The dog days are done
Can’t you hear the horses
‘Cause here they come

And I never wanted anything from you
Except everything you had
And what was left after that too,

Happiness hit her like a bullet…

– Florence and the Machine, “The Dog Days are Over.”

I see you, at the age of four, float around the room, belting this song. A pink feather Boa flings this way, Blond curls fly back the other way. You’ve got a standing audience, and are fully in your element. Gloves, rings, microphone, sunglasses. They all take the moment to make the birthday girl shine.

We paid one of those birthday party companies to put you in the spotlight on that particular day, but the truth is that you NEVER really need a spotlight to shine. You bring it with you everywhere that you go. We didn’t name you based off of the meaning that comes up via Google search either, but it’s hard to argue against that there is any better way to describe you than to say that you are a “bringer of light.”

Even during my pregnancy with you, I think I knew that I was in for something special, as you were constantly in motion. You came out a force to be reckoned with- screaming and crying-, but calmed right back down again as soon as they placed you on my chest. You just needed to feel back “home” again. And from there, you took off running. Well, as much as your little body would let you, anyway.

You instantly took to a camera, your whole face brightening right up every time you saw one, trying to grab at it and talk. I have so many old videos of you baby-talking whole sentences, wishing so badly that they were actual words. Since the beginning, we’ve kind of just used the tongue-in-cheek saying, “nobody puts ‘L’ in a corner”.

Every day of preschool, kindergarten, etc. was an opportunity for you to go out, learn, have fun, and play. New friends, silliness, singing, dancing, and getting the most out of life have never been issues for you. And I love to watch you strike the match and glow. Doing so many things that just don’t come nearly as naturally for me. Because it’s never been about me. It’s been about amazing you. And keeping you the most amazing version of yourself as possible.

You’ve taken your time becoming a full-blown teenager. And we are so glad. There is no need to rush into what you will have SO many years to experience. Right now, you are 12, just a few months away from 13 and I’m not ready to give away the “kid” part of you just yet. You may regularly give me make-up tips from TIK TOK, but you are also the one who puffy paints my chemo pump bag, and the one who still wants to put together spa days for Mommy and movie nights for the family.

As you’ve gotten older, we’ve begun to see more and more of the thunder clouds roll in. When they rage, they remind me of the day that you were born, and of the very big feelings you experience when you look around and discover that what you expected didn’t happen, or that you are once again away from your comfort zone. During those times, my instinct is to pull you near, and to remind you that home– that place of love- will never be too far away from you.

You are such a strong young lady. And an optimist. With such very high highs and some occasionally deep lows, that you seem to quickly bounce yourself back from. But it’s okay if sometimes you don’t. I find, once again, that my greatest pride as a parent comes back to a pride over who you are as a person. Those friends that you make easily? You usually keep. Unless. Unless they show themselves to be mean or shallow and then you dump them to the curb. You seem to intrinsically know your value as a person and don’t waste your time on ‘friends’ who don’t really.. act like friends.

I’ve also seen how you seem to have a radar for the underdog, or for anyone being teased or mistreated. They will always find a place to sit at your table, because you don’t stand for that. Because of this, I watch you walk between several different ranked “social groups” with ease. Occasionally, something will happen that hurts you a little, but you always find your compass and recover. This, my dear is just one of many ways that I overflow with pride over you.

You love dancing. You love art. Most of all? I think you love humor. When you do social media, or most anything, it’s main focus is to get somebody to laugh, something I feel that you have a natural talent for.

And now, the big rocks (which are of course also in your siblings’ notes, if you decide to pursue them): 1) When you decide who to settle down with as a life partner? Don’t ever settle for less that someone who looks at you like your Daddy looks at me, or like I look at Daddy. Until death do you part isn’t easy, and it also can come unexpectedly early and terribly. Be with your soulmate and take care of each other through those tough times. 2) If you decide to have a child (by whatever means). Lean into love. Love is the first part of your relationship with that child. Let live be the last part as well. Love has to be the foundation, if you are going to be able to get that child to trust you to coach them into being their best selves.

And now, just for you. There will be some dark days ahead. I want to fix that for you, but I can’t. Allow yourself to feel the sadness. Acknowledge it. Don’t try to push down those feelings or bury them. Let the feelings be. And if you need to talk to someone or get help, please do so. Process all of the bad stuff, so that you can keep all of the good stuff safe. Because you can never, ever, ever, ever, ever leave the light that is such a integral part of who you are disappear. Let the dog days happen, and then let them fade away. And then get up on those horses, which will take you to so many places throughout your life. Places that need to see all of the light that you have to bring.

I love you, so much, baby girl. And that kind of love isn’t going anywhere. It can only go back to your heart. Keep it there, hold it there, and share it with others wherever you go.

For Noble Strength

I’m the same as I was when I was 6 years old
And oh my God I feel so damn old
I don’t really feel anything
On a plane, I can see the tiny lights below

And oh my God, they look so alone
Do they really feel anything?
Oh my God, I’ve gotta gotta gotta gotta move on
Where do you move when what you’re moving from.. Is yourself?
The universe works on a math equation
that never even ever really ends in the end
Infinity spirals out creation

We’re on the tip of its tongue, and it is saying
We ain’t sure where you stand
You ain’t machines and you ain’t land
And the plants and the animals, they are linked

And the plants and the animals eat each other
Oh my God and oh my cat
I told my Dad what I need
Well I know what I have and want, But I don’t know what I need
Well, he said he said he said he said
“Where we’re going I’m dead.”

-Modest Mouse, “Never Ending Math Equation”

I watch you a lot. When I do, I try not to be weird about it. I try to catch you when you aren’t looking, which is more often than not. In those moments where you have ventured down from your upstairs teenage fortress like Rapunzel emerging from her tower. Except that for you, escaping is no adventure; just an inconvenient necessity required to obtain food, do the laundry, and occasionally talk to the parents. You emerge down with headphones on, often mouthing along to the lyrics or doing a dorky, outdated dance (like the macarena) before plunging into making yourself some cereal or a smoothie.

I watch you, lost in your own fourteen-almost-fifteen-year-old world, and I see you smile to yourself, or at something that you found on your phone. Nothing forced. Pure happiness. You are especially happy right now, because two characters that you created, drew, and wrote out elaborate backstories for have been accepted into online murder-mystery role playing games. And now, you are having a delightful time writing out paragraphs to describe the stream of consioussness that her characters speak, think, or act out in response to the other characters’ actions.

You show me the prose that you write to describe your character’s words and actions. And it’s really, really good. I try not to dissolve in a ball of mom cheese all over the floor, but can barely contain how proud I am of the young lady that you currently are, and of the smart, quirky, power woman that you are becoming. Right now, you love lots of things that we’ve introduced to you, like Sleater-Kinney, Modest Mouse, Car Seat Headrest, as well as Cavetown and a few other things I don’t pretend to understand that you found on your own. That day you asked to go on a walk with me to discuss Modest Mouse lyrics, I was practically over boiling with pride. You are sardonic, sarcastic, dry-witted, genuine, and sweet all at once.

Already an artist and writer before even hitting 15, you took it upon yourself to find a voice acting part in a for a global kids-by-kids musical, audition for it, and get accepted. I probably won’t be around to see the final product, but I am endlessly proud of how you seek out, find, and pursue the things that you are intrinsically motivated toward.

I do not get to see you later, so I look at you now. I see your long hair grown down to your butt, your affinity for large hoodies, your glasses. As tall as I am, but much thinner, you could pass for my “skinny me,” although we try not to have discussions about weight in our house with positive or negative connotations, a few Mom classics do slip through, like (mom voice), “we would really like to see you eat a little bit more because you are a growing every day and need the energy.” 🙂

Do you know what else you do when you are happy? You skip. You are as tall as I am, and you skip. Nothing makes me happier, quicker, than watching you let go of yourself and skip away.

All three of of you have a little bit of me, and a little bit of Daddy, and a whole lot of your own self. But you, I feel, are the one who is the most like your Mom. I see it in your distrust for authority, and in your sense of social justice. I see it in your character and your moral compass. It took me four decades to get to the sense of confidence in my ability and beliefs that you just naturally carry along with pride, every day. You embrace your awkwardness, use self deprecation wherever possible, and pursue your interests and talents with a confidence that I never, ever had growing up.

When you need to think, you escape into nature; into the forest in the park across the street to walk in the woods or just to sit and think. Just like your Mom did to escape at your age (and well, still do sometimes). Sometimes, when I see you, I wonder whether you aren’t what I would have been, if I had been raised from a place of default love. Well, not exactly, maybe. I still would only probably have only a fraction of your artistic talent. Every once in a while, you remind me of Mom, too, in little random ways. Like your almost completely nocturnal schedule, and the fact that you can’t sleep unless you are laying on your stomach. I guess, like the song says, “Infinity Spirals out Creation” after all.

You requested a rainbow pride flag for your room, so that you could put it proudly on display. You know who you are, and we. are. so. proud. of you.

All of my love for you has never been based on what you do, but on who you are. My biggest sense of achievement, having brought you into the world is to look at you and realize that I created such a good person. You are a person who stands up for what you feel is right, and your opinions don’t change based on your present company. Who you are is the same face that you show to every single person who is lucky enough to meet you. You are a loyal friend, who doesn’t bully, and you genuinely care for others. I would rather you be all of those things, than become a rich, famous, and shallow person.

Okay, NOW- and this part applies word for word to the middle and youngest child as well. I’ve thought about doing that dying parent thing, where I write you a separate letter for all of the major milestones of your life. I decided against it. To be blessed to know you at the ages you currently are at is not to presume that I will also be able to speak for and give advice to the fully-grown human beings that that you will become. You may or may not choose to get married, or have children, etc. So I will instead just leave some basics that I hope you will live by if you decide to pursue these milestones yourselves:

1) Don’t ever choose as a life partner ANYONE who doesn’t look at you like your Daddy looks at me. ANYTHING less than that is less than you deserve.

2) If you decide to become a parent, you will worry about messing things up. Remember to trust your kids like we trusted you, and to fill them with love, love, love, always. Always lean into hate and pain with love. The rest comes after that.

Alright, now back to Ms. “Noble Strength.” Being honest, no, I didn’t choose your name because this is what it means when you look it up. But I can tell you that since you were born, have always felt that it applied quite naturally. Always quiet, thinking before speaking, and then speaking quite boldly about the things that most matter.

If I have any advice for you, based on the specific version of “you” that I know and love today, it is this: Words matter, and words have many meanings. The word “anxiety” is technically a diagnosis, but what you do with that word is very very important. Be careful, as you go forward in life, to use this word as a tool, and not as a crutch. It’s a tool that is supposed to help you become more aware of your emotions, so that you can apply strategies to manage it and take care of yourself. You manage it. It does not control you. Please do not use it as an excuse to artificially limit what I see as endless potential.

In a nutshell, sweetie, never turn down something ambitious just because it scares you. Give everything at least a fair chance before you withdraw out of fear. The best case scenario I want for you is to find something to do with your life that is in alignment with your greater purpose and interests, but which can also provide you with the financial security you will need to face an unexpected health or financial crisis. There is something to say about financial well-being and security. But if you ever find yourself hating what you do so much that it is endangering your health? Walk away. And do it quickly.

Ugh. It is so freaking unfair to me that I can’t stick around to see more of your amazing story. To see you blossom through high school. To see you become the college “art kid” and writer (probably still wearing your trademark hoodies). To see you become the person you are meant to become. I wish all of the best things to happen to you; but know that you are strong enough to weather the hard times which will also inevitably lie ahead.

I worry about the potential for harder or darker times every time I read the daily news. But ultimately my only scope of control is with myself and with yours and your Daddy’s strength to make it through. With that in mind, I want you to know that it may sometimes be worthwhile to pick your battles and to save them for the ones that matter most.

I grieve for my future loss of you, but I am able to see the amazing you that you are today. Believe me when I tell you that it’s something I treasure. I can see you giving me your awkward smile right now, followed by an “okay Mommy” and some nail biting because you don’t know what to say back. You would be surprised at how often I have to suppress saying things like that in order to keep the “cheese alert” at bay for you 🙂

You and I will talk more, of course, just the two of us as I get sicker. But I wanted to get these fundamentals down. Here. Now. During this amazingly gifted summer psychological holiday. In the time before whatever comes next.

With every fiber of my being, I love you. It’s a love so strong that I can’t imagine any of it disappearing when I go away. I believe that it will stay with you, always. You were the one who taught me what it means to be a Mother. To feel a rush of serotonin from the simple act of sniffing a head. My first baby home from the hospital while Daddy and I stared at each other wondering what the heck to do next. My sleepy baby who wanted to slumber more than eat, and has somehow carried that into her teen years. My serious kid who became a hilariously sardonic teen. My self proclaimed “introvert” with friends from several different social groups. My young lady who is often the first to reach out and offer me comfort when she senses I am sad..

I love you forever and always, my beautiful, noble strength. Both on the inside and out.

Psychological Holidays

Oh no, I thought I’d be by now
My head is a buzzing three-star hotel
Oh no, oh no, no, no, no no, no

But I keep it upstairs
Keep it upstairs for the grand finale
I keep it upstairs

Gonna be a blank slate
Gonna wear a white cape
But I keep it upstairs

Gonna jump out of a cake
With my heart on a string
Keep it upstairs, keep it upstairs, keep it upstairs

The National, “Blank Slate”

Holy crap is dying of cancer depressing. I know that it ends (best case) in my home surrounded by my family, and hopefully with enough pain medication that I am not in agony.

That’s BEST CASE. From what I have read, A lot of people dying of cancer do have pain behind what the medication can dull. In some cases, they come in short, restless bouts of wailing heard by loved ones. For others it is more prolonged and/or more subtle. When this suffering happens, it can leave indelible scars in the memories of the loved ones we leave behind. I have not been the caretaker for or at the death bed of someone dying of cancer. I’m a newbie to witnessing death in that way, and most definitely am a first-time dyer.

Being the person that I am, I want to know what to expect. There is a deliberate veil that is put up by doctors, by the family members of the dead, to blur our sights as to what actually happens at the end. I hate that I have to buy and read a book titled, “What Does it Feel Like to Die” (by Jennie Dear) in order to get a glimpse. Why can’t I just talk to someone about it? Those that die don’t live to tell their tales, and those that are close to it want to keep it in that mysterious, dark place.

And then, of course, there are the separate nuances associated with the myriad of ways one can die. Even with cancer, there is a mystique behind the difference types of death that come along with which organ failure(s) begin the process of your unique dying process. Straight answers are hard to come by, but I’ve gleaned that it’s the peritoneal cancer over my small bowels that will most likely be my downfall. I have no large intestine, so a blockage or invasion in my small intestine area would be bad. Again, I really hope that we can arrange for care and a death at home instead of shrivelled up in the hospital. But that’s all that I can do. Hope.

And then there will be emotional last goodbyes. How much can I control what my kids will see? And will I be afraid in the last days and weeks? I will not know until I am there. But what I can tell you, based on my experiences so far, is that a person’s attitude about their impending death can change suddenly and dramatically based upon the level of pain that they are currently experiencing.

Especially prior to getting my most recent pain regimen to work, I’ve had some pretty rough days of pain. The thoughts that began to occupy my brain went something like this:

I get it now. I get how someone can be ready to die. When there is more pain than there is a break from it? When you find yourself irrationally cranky with those around you because you don’t feel good? When you look forward to sleep to get some relief? Suddenly the life that you have been holding on to with all of your strength of being is a little bit easier to let go of .

I imagine that this is why it is often said, especially when people die of cancer, “at least he/she is in a place where he/she is no longer suffering.” How about I just take a pass on getting to the place where I am suffering so much that I want to die to escape it altogether? Something tells me that I am not sure that I am going to get that choice.

All of these weighty visions upstairs make a person top-heavy. It’s a wonder that my head doesn’t just fall over mid conversation, to reflect the relative difference in mental burden between myself and the person I am speaking with.

What was my original point again? Oh yeah, dying of cancer, and especially young of cancer (leaving your spouse to finish the next 4-5 decades you get to miss out on) is a horribly depressing thing. So much so, that we simply cannot withstand such intense sorrow, existential dread, and panic, indefinitely. Depending on the length of between that sharp, first sting and the burn of the final slap, we flow through cycles that allow for a buffering between the blows.

The human brain is a master at finding pulleys and levers and psychological coping measurements. They keep things balanced, and occasionally shift the load to the shelf when you just can’t take it any longer.

And so I find myself here on a summer holiday, and notice that my shoulders, of late, have become delightfully light. Three long acting morphine tablets apaced out through the day have produced a continuous and steady, fizzy flow in my blood punch. There are no peaks and valleys to my pain relief or energy levels. As long as I don’t miss a dose, I am relatively pain free without the haze or the need for the sleep during the day.

This is probably my last summer. I know it. I can’t yet see a path there, but let aome hope lurk beneath this awareness anyway. Surprisingly, I do not feel pressure to pick up and soak in the scent of every. little. flower. in this prairie. The very act of doing that feels so feels aggressive. Instead, I look at each day as another airy ball of fuzz blowing on the breeze. Every one that blows my way is another simple gift. I catch them between my hands without crushing them. I appreciate it, maybe make a little wish, and then blow it back away into the breeze. Each wish is as serious as hope for my treatment to remain effective, or as harmlesss as an inside joke with one of the kids, or a snuggle kiss goodnight, or a family movie, or simply… being? The act of doing nothing at all but watching the world is the most underrated experience ever.

July 15th tells me that it is not only summer, but mid-summer already! Where has all of the time gone?! It was not wasted. That is enough. Wasted would be joy stolen by fear and horror over what is yet to come. I won’t lie and tell you that worries over the coronavirus and the future of life in this country for my kids hasn’t entered the picture, but I have been able to keep it in the “things I can’t control box.” I retrieve calm from knowing that I am doing whatever I can that is within my span of control. And that those tiny changes will just have to be enough.

In this likely final, surreal summer of quarantine I have decided to take a psychological holiday from the horrible weight of cancer. As much as I can, anyway. A huge boon of possibly fantastic news has allowed me to do this, despite some increasingly severe allergic reactions on infusion day and increasingly low WBC counts. My first tumor marker reading, two treatments into re-attempting my prior treatment shows that my tumor markers are going DOWN for the first time in forever, and is possibly a great sign that my next set of scans will show stability or even shrinkage (only the acans can say for sure).

An a-typically positive response to previously exhausted therapy is just the kind of fantastic news that my spirit was begging for this mid summer. Throwing standard of care aside, I relied on a great deal of intuition to convince two oncologist that this was my next best step to take. On some level, my intuition was whispering good vibes before the oncology nurse called with the results. I am filled with gratitude for this psychological summer holiday to match all of this physical warmth that I’ve allowed to linger on my face. Dark, thick lovely woods are waiting miles ahead, but for now, I cherish the energy to meander in the meadow in the sun.

To the blackening shade ahead that must eventually come, I whisper “que sera sera.” You belong to the future. Today’s breeze floats like a fuzzy on the air. If you listen close enough, you might hear a small wish echo-“carpe diem” or perhaps, “joy” or even just a simple “thank you” as it floats onward to its next destination.

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.