Planes on the Runway

I take a breath
And pull the air in like there’s nothing left
I’m feeling green
Like teenage lovers between the sheets
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Knuckles clenched to white
(Knuckles clenched to white)
As the landing gear retract for flight
My head’s a balloon
(My head’s a balloon)
Inflating with the altitude
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Ba, ba ba ba, ba, ba ba ba
Ba, ba ba ba, ba, ba ba
Ba, ba ba ba, ba, ba ba ba
I watch the patchwork farms
Slow fade into the ocean’s arms
And from here they can’t see me stare
The stale taste of recycled air
I watch the patchwork farms
(I watched)
Slow fade into the ocean’s arms
(Slow fade)
Calm down, release your cares
(Calm down)
The stale taste of recycled air
The Postal Service, “Recycled Air”

I haven’t wanted to write lately. At least not about the serious stuff. It isn’t intentional. Sometimes, I get into “bubble wrap” mode where I want to be ignorant about the scary details and go into a sort of “soft focus” optimism.

I think that I am in that place right now. I’m trying not to think about the fact that the next phase will likely be reality coming to slap me in the face yet again. I’m dreaming of successful outcomes and potential longevity on my current regimen if everything falls into place. At the same time, I’m almost afraid to even type that out for fear of “jinxing” myself; which the illogical superstitious part of me is convinced that I’ve done in the past. I’m dreaming of soft landings when my own history of this disease should be more than enough to remind me to instead expect turbulence- and potentially a crash landing ahead.

I’m at a decision point in my treatment. My latest CT scan showed growth in my pelvic/ovary met and shrinkage in my largest liver met. My pelvic tumor is now so big that it is compressing my bladder and bowels. I feel pelvic pain in the area referred to in my scans as my “right adnexia” on a daily basis now. There’s another cancer bonus for you- greater understanding of anatomical terms!

So, did chemo fail? I don’t think so. I have heard from multiple sources that ovarian mets aren’t likely to respond to chemo. So if it’s shrinking the liver met, that’s a good sign, right? All I have to do is figure out what to do with that one, pesky, ginormous pelvic met. Piece of cake, right?

There are multiple planes on the runway and each of them represents a choice, or direction that my treatment can take from here on out. The goal is to have as many of them lined up as possible. As long as there are planes, I get to keep flying- happily breathing in recycled air. This time with my favorite cancer travel perk- a face mask to ward off all of the diseases circulating that will gladly test my now compromised immune system. I need those planes, because I know that when I get down to only one plane that I will be stepping onto my last flight.

Plane #1 is to convince my oncologist to stay the course and to convince a surgeon(s) to perform a dual operation to resect my right lobe of my liver, ablate the single small met on my left lobe and remove the pelvic tumor and both ovaries. After that I can return to my current chemo regimen.

Plane #2 is similar to the first, but it it involves only removing the ovary met.

Plane #3 is decidedly less appealing. Instead of surgery, I switch chemo regimens. My options are limited, but I would then try to convince my oncologist to duplicate a current, ongoing trial off label. This trial was one of the most talked about trial for colon cancer at the ASCO (American Society of Clinical Oncology) conference this year. It involves combining an approved 3rd line treatment (Stivarga) with another drug (Opdivo) which is currently approved only for the small minority of CRC patients who are “microsatellite unstable”. I am not. This would mean appealing to the drug company to provide it to me for free, based on “compassionate use,” since insurance is unlikely to cover it.

Seems far fetched, but I know from my Colontown Facebook groups that several people have succeeded in doing this already. And if approved for them, why not me?

Plane #4 is the least appealing. I go on Stivarga alone. It represents the first leg of my final flight.

If I don’t get plane 1 or 2, that reality slap is going to come hard and fast. Because I do not believe a new line of chemo is going to do anything to my pelvic met.

If I don’t have the surgery to take it out, it’s going to take me out. As it continues to grow, it will only cause more and more problems. Problems that will put me in the hospital with potentially fatal complications, infections, or sepsis. That isn’t how I want to go out.

Looking back at the past year, there are already so many false starts, wrong turns and “what ifs.” At one point- before we knew for sure of spread to the peritoneam- I was considered to be fully resectable. I might have been one of the lucky few who could be cured! Today, I have a single met squishing multiple organs in my abdomen and threatening to take me out much sooner than expected.

What do the doctors, the drug companies, insurance and my cancer have in store for me next? Like a game of roulette, I place my hope on red, thinking that it has to hit soon because the record shows a string of black. It’s faulty logic in both the casino and in life. For now, I just have to fly into the fog. I’ve calculated where the oxygen mask, life preservers and exit rows are in case of trouble. But between you and me? I could really use some bluer skies.

Cancer Looks Good On Me

I Can see you hurting beneath your new red dress

Beneath your sharp new shoes and your new tattoos you are direction-less.

And I know you’ve been working as hard as you can
To pre-empt the question, the expectation and I understand.

So come on now if we all pull together, we can lift up the weight of the world from your shoulders

Lift the the weight of the world from your shoulders just for a moment or two.

So many masks to wear, so much weight to bear but you were only ever you

You were glorious you, you were glorious

Frank Turner, “Glorious You”

“You look great!” This is a phrase that I’ve heard quite a bit lately, especially over the past few months. My 14+ hour surgery in April and my long recovery caused me to drop several pounds. Shorts that I squeezed into are hanging down on me and showing my underwear now, so I guess those won’t work!

In my professional working days, I would dress up considerably to go to work (suits, nice dresses), and then immediately switch over to about one step up from homeless on my day off (sweat pant city, and not a hint of makeup). There really was no in-between. Now that I am not working, I find that I am seeking ways to find that middle ground. I don’t want to look run down every day. Just because I often feel like shit, doesn’t mean that I have to look like it.

My solution is to wear my cute little summer dresses and skirts almost every day. A simple dress with an application of mascara to make myself look more tired can go a long way.

Cancer has stolen so much from me. I am determined to delay the inevitable effects on my external appearance for as long as I possibly can.

To say that I’ve been given an interesting cornucopia of genetics (some of which I am convinced are what put me in this predicament) is an understatement. One thing I definitely received is thick hair genes. Prior to chemo, my hair was so thick that my hairdresser would not only marvel at how long it took to cut and dry it but also how much was left on the floor afterward.

That thick hair is thinning out. With every shower, with every hair brushing.

But luckily, you can’t tell yet. In fact, my sparser hair has actually made my hair more easy to style and put up than I can ever remember. That high ponytail that I saw other girls do? I can finally do it now, because I don’t have masses of hair bunching up in front. I can even clip part of it back now in a clip or barrette without it immediately popping open and breaking.

“Feeling run down? Try cancer! There’s nothing quite like 3-part surgeries, weeks of brutal recovery, and intravenous poison injections to put that pep in your step!”

And if I look this great? I couldn’t possibly really have a terminal illness. I must be recovering!

I’m very sorry to tell you that no, I’m not. There are a lot of things that I am experiencing that you don’t see:

– You don’t see the ostomy bag affixed to my body just under the underwear line.

– You don’t see the scar lines that look like a road map on my abdomen. It spans from my boobs down to my c- section line. Then just above my naval, on my right side there is a large half smile that they cut to get to my liver.

– You can’t feel the cramping that continues from my large ovarian met, or the constant irritation from a steady stream of UTI infections that have become a new normal while my body is still struggling to get used to my ureter stent.

– You can’t feel the fatigue, mood changes, nausea and other body issues caused in the days following chemo.

– You aren’t noticing (or at least aren’t telling me) that this new regimen has my face breaking out in ways that I haven’t seen since I was a teenager.

– When I’m not wearing a low neck dress or shirt, you can’t see the chemo port implanted under my skin. You can’t see that it still sometimes irritates me. That the seatbelt strap goes right across it and makes me flinch from it every time that I get in the car.

But I am glad that you don’t. My entire life is already engulfed in cancer and fears about what’s going wrong internally. I’m not rushing into putting that internal torment onto my external visage. I may eventually lose all of my hair. I might eventually look gaunt. But today I am not either.

So go ahead and tell me that cancer looks good on me- as long as you aren’t flat out lying to spare me.

Living While Alive

Love of mine, someday you will die

But I’ll be close behind and I’ll follow you into the dark

No blinding light or tunnels to gates of white

Just our hands clasped so tight, waiting for the hint of a spark

If heaven and hell decide that they both are satisfied

And illuminate the no’s on their vacancy signs

If there’s no one beside you, when your soul embarks

I will follow you into the dark

You and me have seen everything to see from Bangkok to Calgary

And the soles of your shoes are all worn down

The time for sleep is now

But it’s nothing to cry about

‘Cause we’ll hold each other soon in the blackest of rooms

Death Cab for Cutie, “I Will Follow You Into the Dark”

In the year 2005, my husband and I were 5 years into our marriage and pregnant with our first child. Death Cab For Cutie’s “Plans” was on constant repeat. Our favorite song off of that record was “I will follow you into the dark”. This was a song that somehow managed to be simultaneously macabre and romantic:

“If there’s no one beside you, when your soul departs, I will follow you into the dark.”

At the time, I imagined this song being played at my funeral. I was going to be old and grey, and if I went before Abe he would soon be following after. I did not picture that there would be a span of decades between the two events. This breaks my heart so much, that I honestly really can’t bear to listen to it any more.

Be that as it may, the song still gets many things right.

The song speaks about religion in the context of fear and punishment. It evokes a state of mind that is so prevalent- especially in American culture. We get points for suffering. For working harder. For being busier than everyone else. And love? It is earned, rather than being freely given. Some children never get any. Or they get conditional love. A love encased in fear. If there is a god, love is the god, not fear.

Yet we so willingly jail ourselves into lives that don’t make us happy. That we feel like we can’t escape. We devote an endless trial of hours beside toxic, abusive people that we would never choose to be around if our pay check didn’t depend upon it. A good work environment will encourage you to share your talents. A good work environment is one in which you feel you have autonomy and purpose- at least by the time you’ve got a couple of years to learn and train. A good work environment can even be (for some people) something that is rote and easy. Something that isn’t terribly stressful that we can leave behind so that we can then go home and follow our true purposes, passions, and talents.

When we aren’t at work we still aren’t satisfied. We are annoyed that we are stuck in traffic. Or by a comment someone made. Or that they got our order wrong at the drive-through. Doesn’t it seem like we are almost built to make ourselves miserable? Every hour that we worry about work, every hour that we worry about what someone thinks of us, and every hour we stew and work ourselves up about that comment is another hour of our lives that we submit ourselves to misery over happiness.

Now I am going to be blunt. When I received a terminal diagnosis. I stopped worrying about all of that crap. Because I learned what REAL problems actually look like. I am not trying to be condescending, I used to be there too. But there are very few problems like knowing the reality that everything you know and love will soon be taken away.

But you won’t get that. Because you haven’t been in my shoes. You can think about it conceptually, but you won’t get it. Until you’ve had that fear. Until you are out of options. Until you stare it in the face.

The biggest cure for minor worries and proper perspective is a terminal diagnosis.

Without a short expiration date, there is still another day to come to start again. To do things better. To solve the problem or find ways to not let it affect you as much. For the larger problems, like the horrible sensation of grief. There are still years to go through the process of healing. To find a way to live with the loss, cherish the fond memories and still have some happiness.

To quote author Julie Yip-Williams (who documented her own experience from diagnosis to death from colon cancer in the book “The Unwinding of the Miracle”) “Life is wasted on the living.”

You don’t have to imprison yourself. Roll down the windows, turn up the radio and sing during your daily commute. This is your life. Please live it. And leave the job behind when you leave for the day. When we live to work we lose far more than the brownie points we are hoping to gain. We lose time with our families, time spent on hobbies. We lose freedom and happiness.

Love openly. Love without fear. Those who reject you can be easily removed from your tribe.

You and me, have seen everything to see…

Experience life with your loved ones. Invest in experiences. Go on a date with your husband. Take the kids to an amusement park. Go on the freaking vacation. These build love. These build memories.

On various vacations with my husband, we swam at Trunk Bay. We went cave tubing in Belize. We zip-lined. We para-sailed. We saw incredible shows in Las Vegas. We had breakfast overlooking Pike Street market in Seattle. We screamed our heads off to our favorite bands at Lollapalooza in Chicago. We saw a Broadway play. We biked across the Golden Gate Bridge. We hot air-ballooned over Oregon’s Willamette Valley. We sat on an aft balcony of a cruise ship and watched Martinique disappear (we also did other things not mentionable in this blog).

On various vacations and daily getaways as a family, we screamed on roller coasters. We went down cruise ship water slides. We worked as a group of five to get ourselves out of an escape room. We picnicked in the park after a 10 minute walk through the woods from our house. We danced to Caribbean music on a catamaran. We splashed in swimming pools. We swam in the ocean and watched them play, scream and smile. We watched the sunset. We watched our oldest daughter learn how to drive a boat on a lake, and all of our kids laugh and scream while tubing off of the back of it (disclaimer: not at the same time our daughter was getting lessons.)

I have never had a vacation just with girlfriends… until last week. I took the leap and it was one of the best decisions I’ve ever made. We saw the sights together, laughed together, and had meaningful conversations over wine and pizza. We need time with friends too. If you get a chance to do this, jump at it. You will never regret it.

And I don’t regret a single day or dollar that I invested in any of these experiences. Take the trip. Always take the trip.

But you won’t really do these things because you read this blog, will you? You may file it away somewhere in your brain alongside inspirational quotes that you think of every now and then. You won’t really change. Because death is now, and always will be an abstract concept to you. Until some day it isn’t.

Cancerversary Reflections

I was driving, taking chances

Walking way too far out on

Some broken branches

Sometimes where you’re going

It’s hard to see

I always knew there was

Something missing

They said no one could ever get me

To sit and listen

I was always

Trying to leave

Babe it got away from me

Nothing will ever just

Come to you, it’s only

What you find around

And what you do

If you don’t hold it tight

It’ll leave..

El Vy, “No Time to Crank the Sun”

It’s been one year since my life turned upside down. I was sitting in a hospital, hearing the words and blissfully unaware of what was to come ahead. At that time, I would be done with cancer by now. But I am not done. I will never be done. Until it is done with me.

One year of a life with a gun pointed at me, waiting for cancer to pull the trigger. That finger looks really unstable right now. My near future seems really unstable.

I didn’t know that I would be in danger of running out of chemo options so soon. I didn’t think that I would already be looking at trials as a backup plan.

I hope for the best. But after a 4-week gap in information, my first tumor number reading bumps back up again. Not a lot for 4 weeks, but it’s up nonetheless. Maybe it spiked again after my last treatment and then fell, and it’s actually on the way back down again? Unfirtunately, there is no way to tell without that interim data point.

To be honest, I’m scared. I want to do more living. I am not ready to be out of options. I’m not ready for this winding down summer to be my last. I’m not ready to have to launch high gear into the bucket list and try to get every experience and last goodbye buttoned down.

Give me a chance to see another few months of stability or shrinkage.

Give me a chance to see another summer and to see my oldest daughter’s first day of high school.

Give me continued health for a bit longer and I promise you that I will not take them for granted.

If I need to be ready, I will find myself there, but I thought that there would be more time.

I have had a year. That’s far more warning than many/most get, but I selfishly still ask for more.

Because I am just now figuring out how to live under cancer’s shadow.

Because I am floored by all of the beautiful people, potential experiences and love that surround me. And I want to bask in them a bit longer.

Because it took knowing that I was going to die in order to figure out how to live this life like it was meant to be lived:

-To take risks

-To stop caring what everyone thinks of me

-To simply be my beautiful self and know that it’s enough

-To love fully and without restraint

-To feel free. Why do we live our lives as if we are trapped without a key? The key is right there in our pocket. We have always been free to walk out and away from the people and situations that poison us.

-To have a purpose and goals that are in alignment with that purpose. To feel that you play a role in the grand play of humanity.

– To stop caring about and getting caught up in all of the small annoyances in life. They are nothing! Just temporary moments. Stop feeding and making problems that unnecessarily steal your joy.

-To love those who love you. To dive in and see their unique beauty and to recognize everything that they have to offer the world. And to accept them wholeheartedly.

– To dive deeply into showing affection, even if you are afraid that you might drown.

This is what life is and always has been about. But it is very, very difficult for most of us to see it. The whole picture. Until we are on the brink of having it being taken away.

I have leaped outside of all of my comfort zones this week. I have traveled across the border into Canada for vacation. I am staying with friends of a friend of mine and depending on their generous hospitality. I am surrounded by people who speak French, a language that I don’t know. I am talking, and listening, and taking things as the natural rhythm brings them to me.

I am trying not to think about the scans and results that will come next week. I am trying to- just for a little bit- not think so much about cancer.

So, on my first (and hopefully not last) cancerversary, I have decided to celebrate by taking a break.

No doctors visits. No bloodwork. No scans. No treatments. Just one week of living (mostly) like everyone else until the cold hammer of reality comes back down again.

Character Development

Not everyone grows up to be an astronaut,
Not everyone was born to be a king,
Not everyone can be Freddie Mercury,
But everyone can raise a glass and sing.
Well I haven’t always been a perfect person,
Well I haven’t done what mum and dad had dreamed,
But on the day I die, I’ll say at least I fucking tried.
That’s the only eulogy I need,
That’s the only eulogy I need.
Frank Turner, “Eulogy”

Every story has a protagonist. A leading character who the reader follows through a series of events. In most stories, you see the protagonist go through a change of some kind in response to the events that occur in the story.  As we each go through our own lives, we become our own protagonists. We tell ourselves a story about who we are, where we came from, what part we play in the events of our lives, and where we are going next.

Part of the story we tell ourselves has to do with our own character. Who are we? Some people think about this shockingly little. Others quite a bit. You probably wouldn’t be shocked to learn that I fall into the “quite a bit” crowd. And it isn’t because of I am dying. This is something that I have always done.

Several years ago, I was selected to attend a leadership seminar. Part of the class was one of those “learn more about yourself and personality” exercises. You probably know what I am talking about- you take the quiz, you get a report, and you share with the class. What I loved about this one was that it was entirely focused on identifying a person’s strengths. The idea is that everyone has their own unique strengths and perspectives.  If we could only focus on pulling those out and capitalizing on them we could make so much more of a difference than focusing only on correcting a person’s flaws. I loved the idea.

Out of some 30-40 strengths, here were my top 5 “strengths.”

1) Learner- has a great desire to learn and continuously improve. In particular, the process of learning, rather than the outcome is what excites them

2) Input- has a craving to know more. Often they like to collect and archive all kinds of information.

3) Relator- enjoys close relationships with others. They find deep satisfaction in working hard with friends to achieve a goal.

4) Intellection- characterized by intellectual activity. They are introspective and appreciate intellectual discussions.

5) Restorative- is adept at dealing with problems. They are good at figuring out what is wrong and resolving it.

I suspect that anyone reading this blog would be surprised at none of these.

Perhaps the most surprising might be the #3- Relator. However, after reading the more detailed description of this trait, it’s difficult to say that it isn’t spot on:

“Driven by your talents, you typically do your best work when you can bring your expertise to an enterprise. You prefer activities that keep you busy from start to finish. By nature, you are quite comfortable being honest about yourself with others. You harbor very few illusions about who you really are. Furthermore, you can openly acknowledge your mistakes and shortcomings. This is apt to distinguish you from most people.”

My first response to this report was. Yep, that’s me. My second response? Wow. I am really boring. Four out of five of these involve collecting, organizing and analysing information in order to learn how to do things better or solve a problem. It is what it is. That’s what nature, nurture, and 3 years of writing thesis papers as an English Lit major made me. I may be a one-trick pony, but I guess that I really excel at that one trick.

Most of my foundational personality traits are centered around a growth mindset.  Remember that post about having an internal locus of control?  This is where it comes from.

The “learner” trait, as I’ve alluded to previously, is one that I had to develop in response to the events around me. It was my escape route to a better life. From adolescence on, I’ve been driven to make myself and situations that surround me better today than yesterday, and better tomorrow than today. I can’t claim that my personal growth always moved quickly, or that it was even a straight line, but the overall trajectory was always upward.  Being raised by self-destructive people kind of forced this on me. When you have a bio-Dad, mother and brother who all clearly have issues but yet are somehow also completely blameless for everything that went wrong in their lives, you begin to turn a critical eye inward.  Otherwise you are doomed to follow the same path.

For years, I was too critical, and that voice really never went away. But as the years and decades went on, I learned how to focus not just on my weaknesses, but on my strengths as well. I started to learn that sometimes, my instincts were right. I started to trust myself more. And more than that- the older I got, the more I was able to realize that I actually had a lot to offer. That I wasn’t just a series of things that needed to be fixed. Because of where I came from. Because of who I was related to. And because of the stories I was told by some of the adults in my life about who I was at a young age.

If I hadn’t grown, I would still be scared of the world and think that I had nothing to offer it. I would still be hiding all of my thoughts and talents for fear that people would criticize and laugh at them. And I would still be dependent upon others to get by and function normally.

Most of my steps were small. What if I signed up for Speech next year and tried it out? What if I told that girl that her interpretation is wrong? What if I study hard and write thoughtful papers and make the honors program at college Freshman year? What if I get jobs that I can walk to and take out student loans to make sure I finish? And what if I wake up at 4 am to study for that huge board that I need to pass in order to get the formal authority/appointment I need for my next promotion?

The “Intellection” trait is probably the most natural of the five.  I believe that I have a natural tendency to think about things very deeply and look at them from several angles.

Input and Restorative are offshoots of the Intellection and Learner traits. They are the adaptive means by which I put all of my thinking and desire to improve into action.

My high “relater” score is definitely not something that I was born with, but rather a skill that I learned and adapted through life experience.  As a kid, I barely spoke to anyone, and this continued up through college.  For example, I have never been good at socializing or attempting to make friends. Firstly, I feared rejection. And secondly, to be honest, I was scared that I couldn’t handle one more commitment. This was all a part of my, “I am okay with not getting help- just don’t expect anything from me in return” mentality. I rationalized that it took all of the energy I had to just to keep my own head above water. Adding someone else to the equation would only force me under.

Life experiences forced me challenge that core beliefs as well. I was not sure about having kids. Could I be a good Mom? It turns out that I could, and it has nothing to do with being perfect, and everything to do with the simple act of loving. Yes, I could be a better Mom than my own and this showing love thing is SO easy and natural. Why couldn’t it have been for her? How damaged must she have been?

And then I If I could survive a full time career and 3 small children, then maybe I was capable of other things as well. I could figure out how to be a friend. I was used to friendships feeling false and temporary. Not worth investing in.

Admittedly, my closest friends today are those people that for whatever reason I simply felt comfortable being myself around. I didn’t seek out friendship, but I did learn to finally let my guard down around certain people who I judged as genuine. Years of observing others made me quite good at this. And when I did this? True friends found me. I made mistakes. I was awkward and occasionally too honest. And they somehow still wanted to get to know me. If THEY could do this for me, then I could grow and figure out how to do so in return. I am so grateful to them for teaching me by example, for the first time, how to be a friend.

My career brought further growth.  Collecting and organizing and analysing information came natural to me.  Working with other people did not.  What I found out was that working as a subject matter expert and leading small groups was actually something that I was pretty good at.  With one very big exception.  I don’t work well with difficult people.  Because I am so honest and critical of myself, I expect others to do the same.  I never expect perfection, but I do expect the type of mutual respect that allows for honest conversation. I don’t expect you to agree with me, but I do expect you to explain the rationale for your position and to listen to mine.  If I have a human need to contribute, then you do as well. And if our common goal is to be successful, not just to be right, there is no end to what can be accomplished. Unfortunately, there are many people who don’t play by those same rules. And that’s when things start to unravel.

My internal locus and growth mindset have written a story of continuous growth. However, it took a terminal diagnosis to finally wake me up and propel me into growth at warp speed. I don’t have 40 more years to finish learning and growing. I’ve now got to fit in all into whatever time I have left.

Given the character strengths listed above, the worst thing that you can do is put me in a situation where I am not allowed to contribute and then gaslight me for bringing problems to light in order to solve them.

Given the character strengths above, the worst thing that you can do is give me a terminal disease, with no clear answers as to why it happened, and with no possibility of ever fixing or solving the problem.

And so we come to where I find myself now. We come back to the emotional turmoil that is the “why” behind this blog.

I keep getting caught up in waves that want to pull me under. A trip back to the office. Curriculum night. Fresh reminders of the sharp turn into the darkness and uncertainty that my life has taken.

And here I am still trying to get better. To identify the problem (stolen expectations of a long life with my family), and possible solutions (focus on what you have today, not what’s been stolen from tomorrow).

Today was quiet. No noise to drown out today’s painful cramping and back pain. Pain that is still easily managed by by low dose pain medications, but which is unfortunately now always present without them. Aches and pains to play on my fears that this new line of chemo isn’t working, and what that might mean for the time I have left and for the number of healthy days left before that.

There is always a dance between acceptance and fear. Each takes its turn in the lead, spinning in circles around my brain.  And the longer I watch the dance, the more I realize that I need to slow it down, to give up the struggle.

My protagonist is facing her final plot twist.  How will these events change me- change my character?  These last few challenges have been trying to teach me one final lesson, and it is the most difficult thing that I’ve had to learn, because it goes against my very nature.  My life has been about an internal locus, continuous learning and solving problems.  But I can’t solve everything.  I can’t solve death.

I’ve learned how to grow.  But I’ve failed to learn how to let go and accept that some things can’t be fixed, and aren’t meant to be solved.  My final lesson is to learn how to let go and be at peace with what is.  My final lesson is to learn how to die.

 

Normalcy

I’m walking around like a soldier who’s home from war
Lost in the foreign landscape I used to know
Will I ever feel like I belong?
Will I ever feel like I belong anywhere?

Frightened Rabbit, “Home From War”

It was on September 1st, 2018 that I first heard the word “cancer.” Just under a year and an entire lifetime ago. I had no idea that day what that word really meant, and how it would permanently change me. I had no idea how it would permanently shatter the foundation of so many buildings and monuments I’d spent my life constructing. When I heard the word “cancer,” I thought “setback.” I thought “challenge.” I thought about the surgery to remove my tumor blockage. I thought of clean-up chemo. I thought about everything being back to normal by this time next year. I didn’t think about death.

Of course the story of how everything unfolded after that is documented in this blog, but it wasn’t until about six weeks later that enough scans and doctors had slapped me in the face to make me realize I’m really not going to be getting out of this alive.

After the most surreal year of my life, I keep waiting for it to become less surreal. And I think that I’ve gotten there. That I’ve found steadier footing. And then the ground shakes, laughs, and knocks me back down off my feet again.

Sometimes it’s the most benign activities that get you. You’ve been through the earthquake and learned to settle yourself. You walk back to the territories of your former life, thinking that it’s safe to go there now. The places are familiar. The faces are familiar. But you are forever changed.

Yesterday, armed with my new coping skills, I believed that I would be okay to test out what I believed to be a form of acquired acceptance of my new reality. But I did too much in one day. And it’s consequence is a sleepless night, a busy mind, and a 3 am blog posting.

It began with a trip back to my old office to wrap up out-processing.

A year ago, I was free from the tethers of a toxic office and a toxic project and embarking on a new one, in a new culture and environment. It was a fresh start, outwardly, but inside all of the damage had been done. I was already sick enough inside to be beyond “curable,” I just had no idea of it yet. There would be plenty of time to shed the weight I had gained and to address the warning signs that I was finally starting to notice. Or so I thought.

Yesterday I walked into that office to finalize some details for my retirement on disability at the age of 41. One thing that’s important to understand is that this was not just a job. It was a six-figure career. It was a year shy of 20 years of investment. It was a huge part of my identity. I would have never dreamed that I’d be coming in today, a year later, terminating formal certifications and appointments and retiring.

I can see it on their faces. What do you say to someone who is retiring on disability because of an ultimately terminal diagnosis? Congratulations? And how should I even mark such an event? With a formal celebration or acknowledgement? Or should I just fade away into oblivion?

I am grateful that I will not be forced to continue working- impossibly balancing medical appointments and side effects- until I finally drop. But retiring in my early 40s with the expectation that I probably won’t last more than a year or two past that? This is not normal. This will never be normal. I balance between jokes and small talk to mask the awkwardness of it all.

I rush out in a thunderstorm so that I can make it home before my son gets off the bus. The chaos and calamity outside are the perfect soundtrack to my inner unrest. My son gets off the bus, smiles, and runs to give me a hug. Some balance is restored, but my day is not yet done.

It ends with curriculum night at the middle school. I was here last year for my oldest daughter. This year we have two at this school. We walk through our children’s schedules and meet their teachers. My husband and I divide and conquer. I take Lucy’s (my sixth-grader’s) schedule.

Teachers and parents are crisp with the start of a new school year, and for the parents, the start of a new phase of their child’s life. Teachers crack jokes. We laugh.

Normalcy. Deceptive normalcy. It’s a sucker punch to the gut. The science teacher talks about the 27 years that he has been teaching. He proudly shows pictures of his adult children on the screen. His kids came up through this district. They are successful. He will take care of ours.

Other parents are internally brimming with thoughts of their children growing up. I am internally sinking into another out-of-body experience.

I won’t get to see my children as adults. I won’t get to brag about them. I smile at the right time. I laugh. Inside, the water is rising and I am running out of air. By the end of the night, I ditch the casual conversations with other parents I know and head straight for the car. I’ve got no more fuel left to pretend that my entire world isn’t upside down while theirs is still spinning.

At home, I finally break down. This isn’t fair. This isn’t fucking fair! I am accepting that I am going to die. I am accepting that I have no control. It is what it is and it will be what it will be. But not seeing my kids grow up will never be acceptable. That will never be normal. And that will never be okay.

Trajectories

Don’t you know someday somebody will come and find you?
If you don’t know who you are any more, they will remind you
We don’t see you around here any more, it’s okay
But I will say your name out loud
And you will be home

The National, “So Far, So Fast”

This latest entry has been one that I’ve been struggling to complete.  Every time I sit down, I write a bunch, but when I look back over what I’ve written it comes across as rambling.

The problem is the subject matter.  It’s a tough one, and there are so many parts of it that need to be explored.  Far more than can be accomplished in a single entry.  So I will try this in “baby steps.”

At the beginning of this year, I wrote out a list of resolutions for what could be my last full year of life. When I decided to check in around the half-way point, I couldn’t help but notice that there was one resolution that I had been avoiding: Prepare for the end. That reflection, combined with some setbacks and uncertainties has finally convinced me that I need to start of this work.

In that spirit, this week’s upbeat reading material has been “What Does it Feel Like To Die?” by Jennie Dear. I’m currently about two-thirds finished.

https://g.co/kgs/YV7Lhm

What’s notable about the early chapters is the book’s focus on trajectories. It discusses not just the physical trajectories we experience as we transition from living to dying in the modern age of medicine, but also the psychological trajectories experienced.

On the physical front, one of the possible life/death trajectories is the “cancer trajectory.” This is described as a period of general health, followed by a steep decline lasting 5-6 months. Although a sudden unexpected event or infection might interject and speed things up a bit, this is the most likely physical trajectory that my illness will take.

Facing this, helps me to face some of the end of life decisions that I will have to make. When I hit this decline, where and how do I want to spend this time? Where and how do I want to die? The following chapters discuss the various options and it becomes clear to me that home hospice care is the best answer. While acknowledging that I will not be able to control everything about my death, that would be my preference.

My last image of my mother was in an ICU, on a breathing tube, and discussions of being disconnected from life support. I don’t want that to be my family’s last image of me.  I don’t want that to be the last discussion about me. With home hospice care, I am more likely to die at home and without the intervention of life support to begin with; saving my husband from having to make a choice to remove me.

That doesn’t mean that I expect everything to be pretty. I know that it will still be ugly. But it won’t be within the confines of a stale hospital room where there is no room to move, to linger, to visit. Not just with me, but with my husband, who will need all of the support he can get during this time.

And then there are the psychological trajectories that are commonly experienced by those of us who have been hit with that infamous “existential slap.”

I would love to tell you I’ve handled the psychological aspects of all of this uniquely, but the truth is that my response has been quite typical in many ways. I had about a 3-month period of full existential dread, followed by a period of processing my way toward some kind of acceptance. Interwoven throughout both, I experienced a cycling through Elisabeth Kubler-Ross’s five stages of grief.  Not in file and rank order, but with different emotions popping up randomly.  Sometimes even within the same day.  I suspect that this was prolonged a bit unfortunately, because of false hope and setbacks.

As I mentioned in some prior posts, I am trying out mental approaches to help me get closer to acceptance.  And they seem to be working for now.  But as I write that, I am still keenly aware of the significance of my latest tumor marker reading.  I am trying to guess what the latest tea leaves hold for my future.  The acceptance has to come from knowing that whatever the next set of numbers brings, it will not be my fault.  And whatever it says will not be within my control.  I hope for one outcome, but accept that the other may still happen.  It’s the only way to make what time I have left here not so much of a struggle.

I wonder whether it’s working too well at the moment. There have been more deaths in my support groups.  Some from people who were inspirations; who have been keeping the beast at bay for years.  Is accepting the unchangeable causing me to lose a bit of my fight? Is that why it has been so difficult to get this blog entry out the door?

I’ve gleaned from the reading that for patients on the “cancer trajectory” there is often a temporary return to the sharp edge of the existential slap once that final period of rapid decline commences  I’m expecting that. This means that I have to work ahead on end of life plans.  Now, while I can, before the emotional and physical consequences of that final step go into full swing.

There is one more trajectory that I need to finalize.  And that is the story of my life.  Dear’s book addresses the concept of life stages, and delves into Erik Erikson’s 8 life stages, in which we pursue mastering different crisis (trust, autonomy, initiative, industry, identity, stagnation, etc.).  The stagnation stage is usually present in one’s 40s, 50s and 60s.  It’s the stage that I was grappling with when all of this hit.  It’s the stage where you are tasked with “creating something to outlast your own life, such as working to change your community or mentoring younger people.”  After that, there is only one stage left.  That of “reflecting on your past.. (and) finding satisfaction with the life you’ve lived, and through that contentment, wisdom.”

This last stage apparently begins automatically once you learn that you have a fatal condition.  And it’s my task to conquer that now.  It begins with defining the story of my life.  It ends with writing it’s conclusion.  In literary terms, this is referred to as the denouement.  As I’ve discussed in the past, my story has been defined as one of growth for quite some time now.

I wanted to be able to conquer these final challenges that were holding me back.  I wanted to be a survivor and to share my story with others.  But life, luck and cancer had other plans.  So am I finished growing?  Of course not.  Death’s unwelcome entry at only the halfway point of my life has served as an accelerator.  It has forced me to push past those final roadblocks much more quickly than they otherwise might have.

And that, my friends is how this story ends.  What’s left is to write out the details.  To write out the letters to my family.  So that they may know who I was.  So that they may know how much that I loved them, and that I didn’t want to leave.  And so that I might be able to communicate what I want for them in their lives to come.  Because it will be their stories- their purpose, their love, their values, their happiness, that will be the most important ones of all.