The crumpled ocean is.. no boat trip

These two simple lines from Frightened Rabbit’s “The Wrestle” were the first words written on this blog, 3 and a half months ago.

“The Wrestle”- as it’s writer, Scott Hutchison would later describe it- is about “either wrestling a shark or fucking someone.”  The lyrics cleverly comparing the vulnerabilities and insecurities of sex with someone who intimidates you to wrestling a shark.

My inclusion of those opening lyrics as a way to kick off this blog was deliberate.  Not because it’s about sex, but because as you look deeper into each verse, you quickly realize that this song is about coming to terms with any struggle that strips you down to your naked vulnerabilities; and which can feel too powerful to bear:

The crumpled ocean is no boat trip/ The dark waters stole my clothing

The shape stirs beneath me/ A pulse pounds along bloodstreams
The first bite marks the beginning of
The clothe-less wrestle with the clothe-less animal

When I wake up on the boat in my first blog post, I find myself in the hospital with a tumor.  My first surgery, my first 12 days as a hospital patient are the first bite of cancer, and the biopsy report and PET scan are the dark shades of what’s to come.

This is the test I left land for/ To grip flesh and pull muscle in
The vice clinch of the struggle/ I can’t give in to the weight of

I’ve already left land and entered uncharted territory.  The sea is endlessly rough.  It knocks me side to side.  But my fight is still in me.  I can’t afford to give in and let the struggle take me over.

But in the past two weeks alone I’ve hit a hurricane.  The first storms woke me from calm seas and left me once again heaving over the sides of the rails.  Then, a brief calm, a brief hope.  I assembled the crew and thought I had things under control.  But the storm picked up again.

My enemy, please stay close to me/ I’ve no breath left, you cold breath thief

The words from my first blog post come back to me, truer than ever:

I can’t breathe.  My head is spinning.  How the fuck did I get here again?

Lesson #2 about Cancer.  You don’t find about everything right away.  You wait for an appointment.  You wait for a scan.  It’s possible to be three months into a diagnosis and STILL not know the full extent of your initial diagnosis.

It took a full 6 full months, several misleading scans and finally a laparoscopy to finally confirm existing peritoneal disease.

Lesson #3 about Cancer. You pass many islands on this journey.  Hope and despair are only as far as the next scan, the next doctor’s visit

I’ve passed more islands of hope, only to discover that the boat was never meant to stop there:

• My liver tumors shrink with chemo, and my surgeons tell me that I’m resectable.
• My peritoneal MRI comes back clean, indicating no extensive peritoneal spread.
• I go in for a pre-surgery laparoscopy and they DO find extensive peritoneal disease and call off all surgery despite having a liver surgeon, HIPEC surgeon and colon surgeon all on-call, presumably to address this very contingency.
• I fly out to Baltimore to meet with a surgeon known to take on the challenge.. and he does.  But then begins to dial it back within hours after speaking to my first surgeon.  He now wants another MRI; another laparoscopy to decide whether to take me on.

Lesson #1 from my first post was that you can’t always count on doctors to tell you the whole truth, especially when the news is bad.  Why did my liver surgeon have two other specialists ready to operate if they found something on the laparoscopy, and then back out completely instead of using them?  Why didn’t he tell me, at any point, that no surgery- no resection or HIPEC at all was a possible outcome?

I can now add a lesson #4 about cancer: Surgeons have protocols to help them determine who is worth saving and who isn’t.  They prefer to call them risk-benefit trade-offs.  Once you have metastases to more than one area, all that you hear from surgeons is that “there would be no benefit” to surgically treating.  Two weeks ago, I was resectable and was up to between a 40-45% chance of making it to the 5-year mark.  If they don’t do HIPEC and don’t resect or operate on my liver I am down to about a 6% chance of making it that long.  6%.

If my surgeon’s life was down to a 94% chance of dying soon without taking this risk, I’m guessing that he would take it.  But I digress..

These fierce, tumultuous seas are laughing at me and reminding me once more that I’m not in charge.  I’ve never been in charge.

This cancer is in charge.  And the establishments and protocols surrounding who they will operate on to save and who they won’t are too powerful.

The last gasp from a burst lung/ The fight fathers, the weak son

The last taste of salt in my mouth/ My skin breaks with no sound

I’ve done what I can, but I feel weak and helpless.  This is my last gasp before getting sent back to see how long systemic chemo can keep the bully from taking me over and killing me.

I’m torn limb from limb/ There is bone, there is gristle, and spit
In the clothe-less wrestle/ The clothe-less animal

In these graphic last lines, I see my future.  My best case is a surgery that will remove/resect several organs (part of my bowels, uterus, etc. before washing me out with heated chemo).  My worst case is rounds and rounds of chemotherapy and if I’m lucky- trials that will wrack my body and weaken it.

I wish that I could be more hopeful.  But this chapter is a dark one.  I have to weather a few more weeks of uncertainty to see how the chapter will end.  Once I know the ending of this one, I will begin to write the next.  What does all of this mean for my life, and for the time I have left…?

There’s a problem, feathers, iron/ Bargain buildings, weights and pulleys
Feathers hit the ground before the weight can leave the air
Buy the sky and sell the sky and tell the sky and tell the sky

Don’t fall on me (what is it up in the air for?) (it’s gonna fall)
Fall on me (if it’s there for long) (it’s gonna fall)
Fall on me (it’s over, it’s over me) (it’s gonna fall)

There’s the progress we have found/ A way to talk around the problem
Building towered foresight (keep your conscience in the dark)
Isn’t anything at all (melt the statues in the park)
Buy the sky and sell the sky and bleed the sky and tell the sky

Don’t fall on me

R.E.M “Fall on Me”

During my Junior year of high school, my mother and I went to live with my grandparents in Spokane Washington. My Dad had gotten laid off. We had to sell our house in Beavercreek Ohio. I had lived there for five years, and it was the longest that I had ever lived anywhere. Dad stayed back and focused on his job search. Grandpa George and Grandma Jol were welcoming, but at the same time I was keenly aware that they were not used to having a teenager live with them and careful not to impose. Did I raid the caninets too much? Eat too much food?

It was a full school year of witnessing my mother around her parents. That year she seemed happy, at least by her standards. She fell far more into the role of daughter than as mother, and as always, I was a prop. I was the kid who wasn’t as much of a disappointment. She fell in line as best friends with her mother and with pleasing Grandpa George. They could drink, he could not, having already come to terms with himself as an alcoholic.

Grandpa George was a retired Lt Col and pilot in Vietnam, and he was sharp as a tack. He had a big, charming personality and an ability to build or fix anything, just by sizing it up. My grandmother was a beauty, and always had been. Her hair, when let down went all the way down her back. But she always wore it up, in a big, full bun. Grandma and Grandpa adored each other. Grandpa’s parents were Scottish immigrants. Grandma’s family was from Norway. She was as full of wit and spunk as he was in her own covert way. To their children (my mother and her siblings), and to the local community there was a degree of folklore about them. I never quite bridged it or understood it, but suspected that there was a bit more to the story beneath the surface. I knew that growing up with a military parent meant high standards of imagery to be met. I knew there were lots of moves. I knew that Grandpa could be difficult to please. I knew that the war was rough on him, and his children.

I was a guest in a strange land that year. I was on the conservative side of the state, but nevertheless found the high school to be fairly progressive. It was still Washington State and still the 90s, so maybe that was the overriding factor. I fell in with a (very) small group of friends, two of whom were in the band. One of them, a six-foot-three trombonist named Eric would become my first boyfriend and teenage love. Another girl, a redhead named Kim had juvenile diabetes and lived life recklessly at 16 like she wouldn’t live past 25. And she wouldn’t.

The year was fall of 1994 to spring of 1995. I had a subscription to Spin magazine, and was heavily into grunge music (especially Pearl Jam) Live, Buffalo Tom, Toad the Wet Sprocket, Tori Amos, and REM. I was making my way through REM’s discography and found myself obsessed with the beauty of “Life’s Rich Pageant” and had it on constant repeat. I think that Grandpa approved of that one, because it had a rich folk/country sound. I tried my best to be a good kid that year. But really I felt out of place. I needed a space to be away from place of how I was supposed to be.

Eastern Washington is full of evergreen forests. Everywhere. Grandma and Grandpa’s housing complex was within walking distance of one of them. When I wanted to get away? That is where I went.

Nobody ever went back there. I had it all to myself. And nothing soaks up sound like pine needles. Nothing quite smells like a pine forest. In the bath of sunshine, or the wake of a rain shower. It didn’t matter. It smelled perfect. It smelled like freedom. It smelled like peace.

This morning I woke up with the weight of the world draped over me. The air in my lungs felt just as heavy and pushing my way up and out of bed was more effort than I’d like to admit. Hope has a lightness like helium that fills you up and lifts you forward into life. And these last couple of days? That tank has been punctured and drained. But I did get up, went downstairs and made my way through the cold grey morning.

I decided to go out to pick up some prescriptions at the pharmacy, and the clouds began to clear. With the clearing, came a warming of the air. I realized that I hadn’t gone out walking through the nature trails near my house since the fall. So I put on my dirty shoes and a light jacket and headed out in that direction. The sun warmed my skin. My shoes got muddy, and the weight began to lift. I just had to keep putting one foot in front of the other.

When I reached the bridge that goes over the creek, I sat down to look at the water bubbling past. I kicked my legs back and forth to swing the bridge like a child. Getting back up, I wandered back further, balancing on the logs of fallen trees and using them as lauchpads to catapult me across mud puddles. I climbed a few of them stacked on each other like a fort and leaned back to breathe it all in.

It is a perfect day, and there is nobody back here to make me feel self-conscious. I have it all to myself.

The sky has fallen, but I am still here for now.

I am still able to walk through these trails, and enjoy this sunshine and enjoy this day. Today, and tomorrow, I am still alive, until one day- several months or several years from now- I won’t be.

The sky has fallen but the curtain hasn’t.

Some days will be cold and dark. Some days will have the smell of recent rain. Others will be full of sunshine. I hope that in each of these days I can continue to seek out my space of freedom in this strange new world, and that I can find in every day a moment of peace.

You don’t open your eyes for a while
You just breathe that moment down

Manchester Orchestra, “The Gold”

It all begins like clockwork. At 5 am you get your packet from desk J-1 then take it to the G-something desk for check in to the PAC-U.

Couple by couple, they start filing in. One having surgery, the other a spouse or some other family connection. Couple by couple they get the speech about the process, the lockers, and the pager. It will go off every two hours to give the significant other/spokesperson an update on how surgery has been going.

We all sit and wait for our name to be called. They usher me back, and transform me from a pedestrian to a patient. My clothes, folded nicely in a fabric bag. The bar code clasped around my wrist. The hospital gown. The perfunctory questions that I’ve answered many times before are rattled off again before they can begin sticking me with needles.

The first prick fails to draw blood, so they keep trying. The stinging pain left over is only a hint of the bruise to come.

Blood drawn, they go back to retrieve the spouse and allow them wait with you- but only for a while. At 7:05 am, just as promised, they come to roll you to the OR.

This isn’t my first time going into a surgery. But this is the first one since I’ve lost confidence that things will be okay.  My first since losing faith in happy endings.

The corridor has a sharp turn.  Abe walks with me, as far as he can go.  When I see the door that he can’t go past I start crying.  It just doesn’t stop.

Perhaps it was intuition. Intuition is something I never used to believe in, but I do now. It started on the day my first oncologist ordered my PET scan to check for spread to the liver. It continued to follow me through every appointment those first few months. A feeling in the pit of my stomach that something wasn’t going to go right today. A feeling that almost always has been correct.

I realize that I must go through those doors alone.  I wipe my tears away, give my husband a kiss and a reassuring smile to tell him that I’m going to be okay, before my escort rolls me through the doors into the unknown, leaving him behind.

This is something that I will do again some day.

But this time, my first stop is outside of the OR. I answer more questions that I’ve already provided answers to. They see the tears in my eyes and tell me that they can give me something mild to calm my nerves and they do. I hear the music in the OR. The backstreet boys? Why is OR music always so terrible? They give me a warm blanket in case I am cold. The surgeon is running late. When he arrives he is complaining about something. But the happy juice has started to hit by now.

They ask me what surgery I was having that day, presumably to confirm my understanding of the procedures I would have. “Liver resection, possible colostomy reversal, and HIPEC if determined necessary.” The “huddle” around me, comprised of anaesthesiologists, a resident, nurses and my liver surgeon nod in unison.

They roll me in, transfer me to the OR bed, stick a few more things into me and then comes the oxygen mask. “Think positive thoughts”, the lady holding my mask tells me. “Positive thoughts lead to positive outcomes.” I don’t remember anything after that.

The next thing I remember is groggily opening my eyes whilst being rolled down the hall by two nurses. A clock is in plain sight, and I can see that it’s only been less than three hours since this began. This was supposed to be at least 8 hours. Panic sets in. I run my hands down my abdomen and feel the ostomy bag still there. And no scar.

Why was everything so quick? Didn’t they operate on me?

“No, they weren’t able to.”

Why not? I came up here to have a surgery and they did nothing?

“I’m afraid that we don’t have the answers to that question. They are going to get your husband and he will have some answers.”

My husband? What about my surgeon?

As I gain a little bit more clarity, the full weight of what all of this means starts to come down on me. Something happened that was bad. I came up here to get a liver resection and they did nothing!

By this point, I am wailing out the words. The chronology is distorted, but I believe that I started bawling something along the lines of Doctors Suck!  This causes them to try to shuffle me away into the farthest corner they can find. I believe that the words I said after that may have been something similar to Yes! Please roll the dying, crying cancer patient away before she makes someone feel uncomfortable!

I make it back to a PAC-U bed and learn that my husband is coming.

Abe, I hope that you have some answers because they’ve told me nothing.

He sits down next to me. “It’s everywhere.” It’s everywhere? How can that be? I had a peritoneal MRI that ruled out extensive spread. “The surgeon took some pictures of the monitor and showed them to me. They look pretty scary.” So now what? Do I just go home to die?

The surgeon, who had run off to make himself busy doing rounds finally shows up. “The peritoneal disease was fairly extensive. I’ve never seen anyone tackle that much. The chemo was working for you, correct? It shrunk your liver tumors. I say that you go back to chemo. Maybe it will shrink some of the peritoneal area. I can also set up another appointment with the oncologist you previously met here at the clinic and maybe she can walk you through some options. You could also go to MD Anderson and MSK. If you like, I could email the oncologist at MSK and see if she knows about any trials.”

I don’t know when all of this spread occurred. Could all of this grown during the six weeks I’ve been off chemo waiting for this surgery?

“Yes, that is possible, but hard to say.” A pause. “I’m sorry.”

You know that sorry. It’s sober, short, and to the point. It’s the sorry that means “there isn’t anything else that we can do for you.”

Once the surgeon has left, the nurses can’t wait to get me out of there. Abe helps me to get clothes on since I am still wobbly. I noticed that they changed my ostomy bag and didn’t bother cleaning off the leak that apparently went down my legs. I feel like cattle.

Bruises and bandages to cover the incisions decorate both sides of my wrists and hands. I’ve got one spot in my abdomen where they presumably went in for the laparoscopy. And another huge bleeding, bandaged area from something stuck into and down my throat. They offer me water, but I can barely drink it or swallow. I am still hoarse.

We check out and leave to begin the numb 3+ hour drive down to Dayton.  We wonder what we are going to tell the kids. After all, we were supposed to have been away for several days.

When we get home, we lay it out for them.

When they took a look inside, they found more cancer, so they decided not to do the surgery. “Is Mommy going to die?” My son. He is going to be the most impacted by all of this. I exchange a look with Abe. Breathe it down. At some point, I probably will. But it isn’t going to happen tomorrow because Mommy doesn’t feel sick yet. And you need to know that Mom and Dad aren’t giving up. We are still looking for alternatives that will keep Mom alive for as long as she can.

Have you ever seen three kids crying in fear of their mother dying? To say that this was difficult would be a HUGE understatement. Abe went upstairs and just lost it. He was long overdue.

And so the searching begins. Collecting names of recommended doctors who would be willing to do HIPEC and be aggressive with peritoneal disease. Collecting potential clinical trials that I might be eligible for. This searching gives me the illusion of control. Because when I stop? I will just be sad. And it will be hard to begin moving again.

Today we contacted the liver surgeon again. On his cell phone. On a Saturday. His willingness to do this went a long way toward why we chose him. We asked him whether anyone had determined my peritoneal cancer index score (something I learned about through resources in my online support group). He said that he didn’t know what that meant. “There was a lot there, did your husband see the pictures I sent him?”

Would the HIPEC guy that you had on call be able to answer that question? It was a loaded question. I wanted to make sure that the colon and HIPEC surgeon had at least entered the room before surgery was called off. After all, I didn’t see them yesterday, and nothing had been mentioned in the prior conversation about them weighing in. Based on the liver surgeon’s response, they apparently were there at some point, but there were no attempts to score the extent of the disease.

I asked about whether the HIPEC could have been done, even if the liver resection didn’t occur. The answer? “No, he would only want to treat the peritoneal disease if the liver disease was addressed first.”

And you would not do a liver resection if HIPEC was required? “No.”

Remember the huddle pre-surgery, where I laid out my understanding of what would occur (Liver resection, possible colostomy reversal, and HIPEC if determined necessary). Remember that they all nodded?

Then comes the plot twist from my liver surgeon. “Perhaps I can still schedule a separate surgery to ablate some of tumors closest to the surface and then ask whether the HIPEC guy would then be willing to do HIPEC in the same surgery.” Great plan. Why didn’t this get discussed, I don’t know- YESTERDAY? When I was there. When you were all there? This part of the conversation took place only in my brain.

He called me again later to say that yes, they could do all of this, but we would have to wait another month until everyone was available to do it.

Now for a bit of mathematics. I’ve been off chemo for six weeks. Another month would be 10 weeks. And then another 6-8 weeks to recover from HIPEC before chemo means that I will have been off of systemic chemo for more nearly 5 months by the time this is over.

A five month break in chemo for someone with very high prognostic factors for recurrence. And if the cancer spreads during this nice little break to, say my lungs or lymph nodes, what then?

There are so many things broken here.

• Broken promises. They never told me that liver resection would not occur if HIPEC was needed. They never told me that HIPEC would not occur unless the liver resection happened.
• Broken communication. How is it that the logistics of this were not discussed amongst the surgeons prior to my surgery? If HIPEC was never going to occur unless there was liver surgery, and liver resection was not going to occur if there was HIPEC, why did you have me consult with a HIPEC surgeon and put him on call to begin with? Why did you sell this to me as a combined operation?
• Broken trust. They promised a surgery and did nothing. They endangered my health by taking me off chemo for several weeks for a surgery that never happened. And why did the story change from Friday to Saturday? Friday the story was that it was too extensive for HIPEC. Today the story is because HIPEC was contingent upon liver surgery. And the colon surgeon? He specifically asked me whether I wanted him to go through with the ostomy reversal even if the liver surgery wasn’t entirely successful. I said yes. He wrote it down. What the hell got broken there?
• Broken empathy. Don’t leave me frightened and crying without answers as I am waking up and need them desperately. Don’t shove me in a corner for expressing sadness and pain and confusion. Don’t run off to do rounds and force my husband to break the news to me. Don’t shrug it off like it’s no big deal that you put the length of my life and overall prognosis in jeopardy because you failed to discuss if-then scenarios BEFORE surgery amongst the surgical team. Finally, learn to read body language. Don’t try to push us out as quickly as possible because we are ruining the mood and vibe. The nurse was trying to crack jokes as she was taking all of my wires and needles out. This may be just another day for you. For me? It’s the day that I get to tell my kids that I’m going to die. I’m so very sorry if I’m being a downer.
• Broken health “care.” I think that it goes like this:
  • You buy a house because it has a great view. But as you look at that same view every day, it becomes commonplace. You start to not even notice it. I mean, it’s there every day. It’s getting pretty mundane and boring.
  • You go into oncology (surgeon, oncologist, nurse, etc.) because you want to help people. But now you see people with cancer every day. The fact that they are dealing with big issues and dying is commonplace. You start to not even notice it. I mean, these people are there every day, cycling in and out. And some of them are such downers. It’s getting pretty mundane and boring.

What is another day at the office or hospital for you is life changing for me. It’s life-changing for my family. You sent me home without doing what you said you would. You sent me home with no hope and an “I’m sorry.” The moment you decided that you couldn’t or wouldn’t do anything you distanced yourself as protection. “I’m sorry” is a shield.

Yesterday, I groggily opened my eyes. I breathed it in. Something bad had happened. I’m still breathing it in. Because I can’t call anyone, or set up another path to a way to solve this until Monday.

I cycled through anger this morning, but right now I just feel numb. My appetite has left. My limbs feel heavy. I keep catching myself staring straight ahead but looking at and focusing on nothing.

I guess that something else got broken a bit on Friday. That something was me.

• My trust in the surgical team I chose (the subject of my post from only one short week ago).
• My trust in my own decision making. I think I went with the wrong surgeon. He won me over because of the Clinic’s infrastructure and reputation, his straight-forward manner, and by giving me his cell phone number to set things up if we decided to do surgery with him. I didn’t see this coming.
• All of the hope and spirit that was hanging on getting a liver resection that would improve my prognosis and give me time? Shattered.
• Now I just have more questions.
  • If I try to wait to get HIPEC to address my peritoneal disease, will I be off chemo for too long? Will it spread somewhere else?
  • If I simply go back to systemic chemo, will the peritoneal disease continue to spread or grow larger, undetectable by any scan except for another laparoscopy?
  • Will I choose wrongly again? Like I did with my surgical team?

Let’s hope that next week I will be able to forge together another plan. Because I am desperately in need to some glue that can help me try to reassemble all of these broken pieces.

How do you write like you’re/Running out of time?
Write day and night like you’re/ Running out of time?

How do you write like tomorrow won’t arrive?
How do you write like you need it to survive?
How do you write ev’ry second you’re alive?
Ev’ry second you’re alive? Ev’ry second you’re alive?

Hamilton (the musical), “Non-stop.”

• After I became an adult, my mother was always saying how proud she was of me.
• After I became an adult, she would be almost saccharine when she was around me.
• After I became an adult, I resented it. It all felt fake.

It’s easy to be a loving mother to an adult daughter who lives in another state, is doing well for herself and who never asks you for anything. It’s very hard to raise a child. It was too little/too late by that point. My guard was already up. And when I tried to give her room to come back in? She fell off the wagon again and messed up. While I was in the hospital after my second child was born, she baby-sat my oldest. We came home to several bottles in our bar half-drained and found her prescription medicine on our floor within easy reach of my toddler. I just couldn’t any more.

• I am getting to a point where I can no longer afford to preoccupy my days with trivial work matters.
• I am getting to a point where I need to make my health, and living as long as I can for my kids, my full-time job.
• I am getting to a point where I need to write letters to my husband and kids.
• I am getting to a point where I need to face my final frontier- forgiveness. Forgiveness isn’t something that I do. When you break my trust, you are dead to me. But I need to do it. Not for them, but for me. Before I die.
• I am getting to the point where I need to finalize death plans.
• I am getting to a point where I need to live every day, and every moment as if it were my last.

How precious is life! How precious is time! I can’t believe how we whittle it all away. Alex Trebek has stage 4 cancer. He is in his 70s. Everyone is feeling sorry and all I can think is, “What I wouldn’t give to make it to my 70s!”

I don’t get 70. I don’t get 60. I don’t get 50. I am going to try to fight like hell for the best treatment and also catch a lot of luck at this point to even make it to 45.

I am running out of time.

I have only two emotions/Careful fear and dead devotion.
I can’t get the balance right/With all my marbles in the fight.
I see all the ones I went for/ All the things I had it in for
I won’t cry until I hear/ Because I was not supposed to be here.

The National, “Don’t Swallow the Cap”

When I think of the people and relationships in my life, I find that I often group them into two extremes. Those on the “in” and those on the “out.” This is very much driven by a desire to not get hurt.

I watch. I take notice. If something is done to break my trust? Or causes me to become suspicious? I stop investing. I push away. It’s just in my nature to be that way. I’ve always been very selective about the people that I allow to be close to me. But if I do let you in? If you pass the test? Look out. I fall hard, and I am fiercely loyal. For example, nobody unleashes my inner fighter like someone targeting one of my kids.

Those in my small inner circle get total devotion. And anyone outside of that ring? Those people will never understand me. Those people could hurt me. They don’t need me, and I don’t need them.

This code, and these rules were written by my heart. But my pesky brain keeps getting in the way. My pesky brain keeps telling me to challenge my beliefs. It tells me to not get stuck in cycles. It searches for ways that I can improve. It searches for ways that I can rise above the habits and mental blocks that have seen imprison other people.

As a result, the last 15-20 years have been a long, slow experiment in challenging my comfort boundaries. If I didn’t have a growth mentality, I would never have made it through college. I would never have made it this far in my career. I would never have made it through those rough years of balancing a full-time career, filling blocks for advancement, and raising 3 small children.

But defense mechanisms are like cockroaches. These are reflexes so ingrained that trying to hold them back can feel at times like pushing a door closed against a flood.

Let’s take trust, for example. Some people have an unyielding trust in authority. I do not.

Trust is one of those things that is shaped by our experience with the world. The more we get hurt, or the more we have experience with those who are in positions to do right and yet still fail to do so, the less we are inclined to have faith that things will be different in the future. I could go deep mining into my past and find lots of examples of these hurts and failures. But I can also find the exceptions. The people who did take a leap. The people who did care when they didn’t have to.

I can probably follow the threads back on my strains of resilience and find at their origin these sparks of light. Sometimes, the littlest moments shine the brightest.

I can still remember clear as day something as simple as my 8th grade English teacher exclaiming “she can read!” when we were taking turns reading out loud in class and it got to me. She encouraged me to sign up for speech my freshman year. She encouraged me to enter a competition to write and present a speech at the optimist club. I got second place. What started with a simple act of someone noticing me turned into a lifetime interest.

Authority is a precious thing.

• Those who hold it have the power to fuel a person’s fire or vanquish it entirely. And it all starts with a single comment. A nod of respect, or a dose of disdain.
• Those who hold it also have responsibility. If you are a doctor, the decisions that you make can save or extend a person’s life. The things that you miss and the risks you don’t take can shorten someone’s life. The words that you say can give hope, or can send someone into despair.

A childhood of being the “new kid” actually taught me some valuable lessons about social constructs and norms and how people tend to manoeuvrer themselves within them.

Every new school meant reading body language and micro-expressions to try to determine which waters would be safe for me, and which would not. Honestly, by high school I had largely stopped expending much effort. Every encounter with my mother meant reading similar signs. Would I annoy her, set her off? Or was this a good time? These skills did help me later to become a better poker player.

I’ve seen humanity at every level of social and political order up close. I believe that the higher up a person goes, the more important it is for that person to have a healthy supply of both ethics and empathy. And the more they should be held accountable. In reality I’ve found that too often NOT the case. Instead, they end up getting buzzed on their own Kool-aid and become blissfully unaware of their weakness and blind spots.

The first 2-3 doctors I dealt with after receiving my diagnosis did a hit-job on my faith and trust in medical authorities.

• The first one taught me that you cannot have blind trust that a surgeon will always be right, and that he/she will always be forthcoming.
• The second taught me that you cannot trust that just because someone is an oncologist that they will have empathy for people dealing with the disease. Or take the time to make sure that they are getting the best care.
• A third taught me that a doctor can crush all hope with nothing more than the language that he uses. This same doctor later used his position and rigid beliefs (clinical trials are only for people who have first been through both lines of first line treatment) to potentially exclude me from a trial that I should have been eligible for (luckily, it became OBE when I became eligible for resection).

But I can’t stop there. And I didn’t. The same logic that tells me to not blindly trust authority tells me that I can’t blindly dismiss everyone in that position everywhere.

There are “good guys” and “bad guys” in every profession. There are “good guys” and “bad guys” at every level of authority. There are good and bad people in high school and good and bad people in life.

But most fall somewhere in between. There are lots of people with good intentions who simply make mistakes. I am one of those people. I’ve been learning to expand my heart to let those people in.

My stage 4 diagnosis kick-started a lifetime of slow change into a forced high speed. Let down the walls. Let them see all of you. But it has to go both ways. I have to see all of them as well. To see their humanity. To allow their mistakes.

When it comes to my medical team? My standards will remain higher. Because I deserve BOTH the best care and the best expertise. Everybody does.

I have a local oncologist who has gained my trust. I have a surgical team at the Cleveland Clinic who has gained that trust. Even so, I still research on my own. I still read my reports. I still ask questions.

I am one week out from a major surgery that will have significant implications for both my length and quality of life. The stakes cannot possibly be any higher. There is plenty to be scared about.

But there is a time and place for everything. I have done the groundwork in choosing my team. I have read their expressions. I have listened to their words. I am being operated on by the second highest-rated institution in the country for GI surgery.

I have attended to all of the things that I can control. Now? I need to let go. Now? I need to trust.

See you all on the other side of surgery.

Oh, we’re so disarming, darling, everything we did believe
Is diving, diving, diving, diving off the balcony
Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave…
We’ll stay inside ’till somebody finds us, do whatever the TV tells us
Stay inside our rosy-minded fuzz for days…

 

–The National, “Apartment Story”

 

 

Are you afraid of the darkness?
I’m afraid of the darkness too
We’re all caught in the blackout
Trying to feel our way out
Wait for the morning
I’ll be waiting for you

 

–Frank Turner, “Blackout”

The more important the problem or issue, the less acceptable it is to talk about.

• We talk all day about our frustrations with the office internet or printer.  But we stay silent about the pervasive impact of toxic personalities and cultures on well-being and morale in our workplace.
• We talk all day about challenges getting our kid out the door in the morning.  But we are supposed to stay silent about how we are advocating to get supports for our kid who has been diagnosed with ADHD.  Or how he has been pushed out of multiple daycares and preschools, and by first grade is already showing signs of depression, smacking himself in the forehead and calling himself stupid.
• We talk all day about health issues such as a bad knee, or carpal tunnel syndrome.  But we aren’t supposed to talk about chemotherapy, or major abdominal surgery to remove organs and tumors.
• We talk all day about planning for retirement- how many years, months and days we have to go.  But we aren’t supposed to talk about death, and that we may only have years, months or years left to live.  Or that we are still mourning our wife who passed away from cancer years ago.  Or break down crying because a good friend of ours unexpectedly passed away.

Because we are are uncomfortable with honesty.  We are uncomfortable with truth.

• If someone dies, we say it’s because it was “God’s plan”.
• “Sometimes you just need to give yourself over to a higher power”
• If your kid is having trouble at school, we say “maybe you just need to be a stricter parent.”
• “We all could die at any moment” (note- I totally get the intention behind this, but assuming we are the same age, my chances of dying in the next 5 years are maybe 20-30 times higher than yours.  If it’s all the same wanna trade?)
• “If they only ____ they wouldn’t have been raped, or killed by the officer.”

The worst of all of these is when people apply broad labels or names to the people that are suffering as a means of marginalizing and distancing themselves from them.  They know that certain words and labels have the power to invalidate a person altogether.  That if they can make the person “other” they no longer have to acknowledge their struggle.

Maybe it’s all gonna turn out alright
And I know that it’s not, but I have to believe that it is

I have to believe that it is
(Probably not, but I have to believe that it is)

 

Julien Baker, “Appointments”

And then darling, just for one day, we can fight and we can win
And if only for a little while, we could insist on the impossible
Leave the mourning the to the morning
Yeah pain can be killed
With aspirin tablets and vitamin pills
But memories of hope, and glorious defeat
Are a little bit harder to beat.

Frank Turner, “Love Ire and Song”

“Heather?”

I wake up from what seemed like a long dream, but which was really just a short nap.

“How do you feel?”

“Fine. Is it done already?”

“Yes it is.  Everything was perfectly normal, especially considering everything else you’ve been through”.

“Really?”

So this was the scene as it played out yesterday at a GI center in suburban Ohio.
“It” was a colonoscopy. My very first one. There were no additional tumors growing. They didn’t even find a single polyp.

“Normal” is the kind of result that is to be expected, if I didn’t live in bizarro world. However, since I’ve been living firmly in the center of bizzaro-world for several months now, this news actually came as quite a surprise.  I felt relieved to have one less thing to worry about, and some positive news to bring up to my surgeons in Cleveland.

As the doctor exited and my husband left to go get the car, the strangest and most surreal feeling came over me.  It was probably the anesthesia wearing off.  What if…?

• What if I had had this same scan just a couple of years ago?  If the screening age had been, say- 38.  Before I had had any symptoms at all.  Without symptoms, would I have even gone through with it?  Or would I have kicked it down the road a bit?  Let’s say I would have gone through with it.  It would have literally saved my life.

• When the symptoms did get noticeable- let’s be generous and say 1-year prior- would it have made a difference?  I’m guessing if I had brought it up with my doctor, she would have also assumed that it was other things and we might have wasted several months any way before getting to a colonoscopy.  It’s hard to say.

• What if the screening age were 40?  Would identifying the tumor 4-5 months sooner have made a difference?  Maybe. I suppose it’s possible that at that point it hadn’t yet spread to the peritoneal area, maybe not even to my liver?  It’s impossible to say.

But I suppose that what-ifs don’t really matter at this point. After all, I don’t get any take-backs, do I?

On the drive home, my husband stopped for some take-out, telling me I could wait in the car.  It gave me another opportunity to sit in silence.  In that silence, the dam broke open and I let it all out in a flood of tears.  Hypotheticals of the past can’t help me. So let’s dive into hypotheticals of the future instead.

Let’s play a game of pretend.  Let’s imagine for just a moment that everything is going to be okay after all.

• I’m this dream, I am waking up from my surgery in Cleveland.  The surgeons are smiling and telling me that they were able to get everything.  Scans confirm this.  I am NED (no evidence of disease).

• In this dream, I then head back to chemo.  I put in another 5-6 rounds, bear through the side effects and neuropathy, and then hold my breath for the next set of scans.  They tell me that everything is still clear.

• In this dream, I continue to live in two- month blocks, hoping that this cancer doesn’t return.  Not in my liver.  Not in my peritoneum.  Not in my lungs.  Not in my lymph nodes.

• In this dream, I am able to pay penance and right all of the mistakes that I must have made that brought me to this place.  In this dream, I can once again dodge the bullet, learn it’s lesson, and go forward stronger for it.

In this dream it never comes back.

Odds be damned, all of this could happen.  So let me snuggle up with it.  Let me put on the blinders and will myself to believe in this possible fairy tale.

• Let me dream of my hair turning grey, and my skin wrinkling up, and growing old.
• Let me dream of seeing my grandchildren and my children as adults.
• Let me dream of retiring some day with my husband and going on amazing adventures together.

Let me dream of mundane problems.  The kind that I see other people stress out about and which barely even register to me at all now.

Let me even dream of really big problems, the ones that that challenge me, require resolve and major change.  I’ll gladly take them.  Because I can still fix those.

Because lately I’ve been diving too deeply in reality.  A reality that looks a lot more like a nightmare than a dream.  And it’s one I can’t seem to wake up from.

I’m reading too many posts in private Facebook groups from people with my disease getting to the end of their options for treatment and preparing for what comes next.

I’m reading a book published posthumously from the blogs of someone just like me.  How her disease progressed.  How she coped with the physical and emotional anguish of getting closer to death and leaving her husband and small children behind.

I’m wondering at which point it would be appropriate to go visit hospice centers as a means of deciding whether I want to die there or at home.

Too much reality has been weighing me down.  Denial is prettier.  Denial is happier.  And I want to feel happier.

So let’s play pretend.

“Alone on a train
Aimless in wander
An outdated map
Crumpled in my pocket
But I didn’t care where I was going
They’re all different names for the same place

The coast disappeared when the sea drowned the sun
I knew no words to share it with anyone
The boundaries of language I quietly cursed
And all the different names for the same thing”

Death Cab for Cutie, “Different Names for the Same Thing”

The “War” Against Cancer

On the individual level, we say that (insert name here) is “battling cancer.”  When they die, we say, “they lost their battle with cancer.”  When they are cured, or are in remission, or sometimes any definition less than dead or on a death bed, we call them a “Cancer Warrior” or “Cancer Survivor.”

So what the hell am I?  Am I now fighting a war against cancer?  Well, the chemo drugs and surgeries are certainly weapons being used to “kill” the cancer.  But when you look a bit deeper, the analogy begins to fall flat.

If this is a war, does that mean that if one person has a more aggressive cancer than another is that person not as good of a warrior?  If one person’s body has an adverse reaction to or doesn’t respond well to treatment, is that person not as good of a warrior?  Of course not.

We can’t truly battle something that in the end is largely a matter of fortune, be it good, bad or both.  It just isn’t a fair fight.  Who survives and who dies of cancer is just as complicated as the reasons why I have metastatic colon cancer at 40, and Keith Richards will outlive all of us.

I do admit that there are times when I’ve fallen into using similar metaphors.  On my first day of treatment, I used Frank Turner’s “Love Forty Down” as my inspiration.  That one was about winning a tennis match against high odds.  No, it’s not war, but it still implies that the person playing will either “win” or “lose” in the end.

I’ve processed my own metaphors through writing these blog posts.  I’ve concluded that I feel the most comfortable equating this new life with cancer as essentially this:  A forced, and unpredictable journey.

Forced.  I am trapped on the boat.  I am strapped into the seat of the roller coaster.  I cannot get off.

Unpredictable.  We live scan to scan.  On the boat, we pass many islands and landmarks.  Some give us hope of a longer journey.  Others offer warnings that the end is getting closer.  On the roller coaster, we climb peaks of hope, only to fall back down again at lightning speed.

Journey.  Some detest this term, as the very name brings up many connotations.  A journey might be something that we do for fun, or to complete a quest, or to learn.  There is an implication that there is a reward at the end.  I totally get that.

But I am under no delusions.  I know that more likely than not this journey is NOT something that I want to get to the end of.  It’s not a journey for the sake of getting to an ending.  From here on out, it’s just about living the journey.  The forced, unpredictable journey.

I don’t get a choice.  I don’t get to know what happens next.  But this journey is still better than having no miles at all.  As long as I’m on the journey, I get to see and enjoy the things that I love, despite the accompanying mental anguish.  As long as I’m on this journey, I get to appreciate life.  Going on this journey is still better than having an abrupt end at the start.  It’s not ever going to be as “fair” as not having this happen to me.  But it’s also not the worst way to leave, if I have to.

A car crash, a pulmonary embolism, a random accident, etc. would have robbed me of the precious chance to prepare and to say goodbye to those I love.

A journey means that I still have time to do things that matter.  I have time to figure out who I am before I go.  I have time to love all of the things that there are to love in this world.  For as long as I can.

I’ll end this entry with yet another song lyric (you know I am a sucker for those); and it’s one that I’ve found myself going back to repeatedly in recent weeks:

My humanity can’t help but rail against cancer.  My humanity can’t help but rail against death.  My humanity will continue to ask questions.  But the only answers we have are the ones we choose to write into our own personal human story.

I still fear the rain.  But I have hope that I can make peace with it.  Whenever and wherever it decides to fall.

Bring on the bandages, pressure the wound
It’s a bright, bright red that colors us in
Good for the invalids, downers, and killers
In sick, sick beds and silicone drips

Buzzing towards me
Spirit awakens
A once lived glitch
And that’s how it gets in…

Frightened Rabbit (feat. Julien Baker) “How it gets in”

Why Me?

Why Colon Cancer?

Am I to blame for this?

While the study above lists several known risk factors, the truth is that researchers haven’t been able to tie down a single cause for the steep increase:

“Gastroenterologist Robin Mendelsohn helped spearhead an investigation of patient records and found that over the last decade, MSK treated nearly 4,000 people with colorectal cancer who were under 50 years old.

But this trove of data raises as many questions as it answers. “We know risk factors for colorectal cancer include obesity, smoking, and alcohol consumption,” says Dr. Mendelsohn. “But the younger patients we treated actually had lower rates of risk factors, including obesity, smoking, and drinking, than their peers who did not develop cancer.”

Concerns about the Western diet, high in animal fats and sugar, have also proven difficult to pin down. This is in part because colorectal cancer among younger people is rising all over the world, including in Europe, Asia, and Africa, where typical diets vary.”

https://www.mskcc.org/blog/new-age-colorectal-cancer-people-under-50

https://www.mskcc.org/blog/new-age-colorectal-cancer-people-under-50

Diet

Exercise

Smoking/Drinking/Obesity

I’ve never smoked.  I do drink, and probably more than the recommended guidelines, but I’ve never been dependent.  Obesity?  Well, I will admit that my weight has crept up over the last 5-10 years (getting older, stress eating, exercise issues above).  I likely fall into the “overweight” category, but I’m not obese.

Conclusions?

What about Genetics?

“The mass of men lead lives of quiet desperation.”

Henry David Thoreau, “Walden”

“I put on an Argyll sweater and put on a smile

I don’t know how to do this…

I’m so sorry for everything
I’m so sorry for everything
I’m so sorry for everything

Baby, come over, I need entertaining
I had a stilted, pretending day…

Just say something perfect, something I can steal
Say “Look at me
Baby, we’ll be fine
All we gotta do is be brave and be kind”

The National, “Baby We’ll Be Fine”

“Baby, We’ll Be Fine” is lyrically one of my favorite songs ever.  Like a good portion of The National’s work, it’s essentially about the ongoing battle that must often be waged between the internal mind and external appearances.

This particular song is about the quiet feeling of despair that comes when you feel like you have to fake your way through in order to please others.  And wouldn’t life be simpler, and the world a better place if we could all just follow those two simple rules (be brave and be kind)?

I’ve spent a good portion of my life defaulting to quiet and fading into the background as a way of masking  what is actually a very deep, and often societally unacceptable inner dialogue.

Everyone does this to some extent, and most people live their entire lives in that box.  Some people even enjoy playing that social game.  They flatter the right people to get ahead, criticize those on the outside and often have no real moral compass (even though they might think they do), because their viewpoints change every time the pendulum swings to a different definition of “right” or “acceptable”.

Others are not intentionally deceiving.  They are just naturally nice, happy, agreeable people.  These people usually aren’t mean or cruel and can find a way to shift between different social circles and get along with anyone.  I would put my middle child in this category.  She has the good fortune of naturally having a high EQ (emotional intelligence), and many studies have shown that this trait is one of the best, if not the best predictor of life success.

Then there are those of us for whom this has never come naturally.  There are several reasons for this.  For starters, it’s difficult to be naturally happy and affable when most of your early adult models were not that way.  It’s easy to be hopeful when your list of hurts, rejections and disappointments is still short.  Small talk and meaningless conversation FEEL fake to us because there is always so much more going on beneath.  We want to talk about things that matter.  But the things that matter can often be polarizing, so we avoid talking altogether.  But we slip sometimes…

I met my husband during one of those slips- twelfth grade English class.  We were discussing a novel we were reading.  To this day, I don’t remember what inane thing was said that day by a popular girl in the class, but it was enough that I had to speak up to edify her superficial interpretation.   This caught the attention of the weird kid in class- the one with the multi-colored hair, flannel shirt, cargo shorts and combat boots.  The next day he was sitting next to me.

Now, in theory, my voice had as much a right to be heard as hers.  In reality, it is ingrained in us at an early age that we should never contradict anyone who is either officially or implicitly higher in the pecking order than ourselves.  What this should have taught me at the time was that there is a silver lining to sharing your voice in these situations.  You will alienate a lot of people.  But those that don’t shy away?  Those are YOUR people.  And they are the most important people that you will ever have the pleasure to know and love.

But I didn’t learn that lesson that day.  I continued to be quiet, with those occasional pesky slips for a couple more decades to come.  While I could speak deeply with my husband and a couple of close friends, but mostly played it close to the vest in those other social situations.

Something about approaching mid-life changed this.  As I hit my late-thirties I began to emerge from the hailstorm of exhausting busyness that comes with raising young children, working full time and filling career blocks.

I had built a life, but for the first time had enough breath and space to look around at it.  In so doing,  I began to see the parts of it I had neglected by doing the “right” thing.  For starters, I had failed to actually answer a very important question- what am I doing? And more importantly- who am I?  I tried to answer this by allowing myself to break out of my shell and begin to use my voice more. In another office, with a smaller team and more independence I had successfully done some of this.  But this was my chance to take a leadership role on a larger project.  Unfortunately I chose the wrong time, and the wrong culture to do it in.

Below is an actual private journal entry from a little over a year ago.  Roughly five months before my cancer diagnosis:

Late thirties, nearing 40.  She was the cusp between summer and fall.  It took a lifetime to get here.

Spring was a blur.  Tumultuous.  Violent.  The girl crouched under a tree in a rainstorm, waiting for the storm to pass.

She grasped at the chance of Summer’s sunnier, safer weather.  She ran from the storms and buried herself beneath the steady, plodding, methodical planting and growing of a life.

Reaching the late days of summer, she looked around at what she had grown.   Her efforts yielded her a family, a home, a career.  Her outward ambiance was thick with foliage.  But something was missing.  She looked at Autumn on the horizon.

A woman at 40 in today’s modern world is a curious thing indeed.  Two decades planting seeds, giving water, providing light.  She had a forest, but it stopped expanding.  She was surrounded by trees, but they stopped growing taller.  She thought that she could climb them, higher and higher.  She had earned her voice, her knowledge.  She went to speak up, she got talked over.  She went to speak up, they criticized her tone.  She went to speak up and nobody listened.

Fall.  The pushing forward meets a pause.  Stunted on the outside, perhaps it’s time she looked inside.  She finds a lot of inky, swirling water.  Like many others, she had assumed that she would fix all of that by building the supports up around her.  All of the plowing and pressing forgot that someday everything has it’s end. The girl, now woman, will have her end too.  Will she end before she has even become?

This was me, tied up in knots of frustration.  Professionally, emotionally, creatively.  This was me ignoring a lot of physical symptoms, blowing them off as stress.  This was me creepily foreshadowing the diagnosis that would arrive in only a few short months.

Will I end before I become?  I refuse to.  The existential slap- the topic of my previous entry- cemented that fear.  The fear that I will leave before I have become myself.  Before I have shared my voice.  Before anyone a step away from my husband and closest friends even knows who I am.  What was missing was creative expression.  What was missing was me.

I’m shedding my Argyll sweater.  I’m shedding my superficial smile.  When I smile, it will be radiant and real.  When I laugh, it will be full and irreverent.  When I cry, it will be heartbreaking and pure.  This roller coaster has brought me all of these.  And sadly, more of the crying part than I’d wish on anyone.

Yesterday took another dip.  My latest scan now shows 4 possible cancerous spots in my peritoneum.  This means no HAI pump to help stop the liver tumors from coming back.  This means probably no transplant if I need it years down the line.  This means that the amount of clinical trials I will be eligible for will be more limited.

I didn’t fall as hard this time as I have in the past.  I am adjusting to my new reality of driving into fog.  I am adjusting to the reality that because of this every corner I turn from here on out will hold new surprises.

But as long as the corners keep turning, and there are still miles ahead I can take it.  Because I don’t have a choice.  All I have to do is be brave, and be kind.