“And so, and now, I’m sorry I missed you.

I had a secret meeting at the basement of my brain

It went the dull and wicked ordinary way…”

The National, Secret Meeting

This blog post is inspired (as I suspect they often will be) by a piece of reading material I came across that struck me. This time it was an article in the Atlantic, titled quite simply, “What it’s like to Learn You’re Going to Die.“ I’ve included the link herein for your perusal and to ensure proper credit.

https://www.theatlantic.com/health/archive/2017/11/the-existential-slap/544790/

Since my diagnosis, I’ve had some people tell me that they understand what I have gone through because they have had near misses with potential diagnosis in the past or other moments where they “felt like they were really going to die.” And I believe that those people who have told me these things really do believe what they are saying with all of their heart.

I’ve had a couple of near-misses myself, such as that time when I broke five vertebrae in my back at 12. Perhaps when I got called back last April for an ultrasound after my first mammogram?

Maybe those count, but probably they don’t. Because I can honestly tell you that in each of those moments, I never really felt pure terror. I always believed on some level that everything was going to be alright.

I was sitting in the hospital, with the resident “hospitalist” over the phone breaking to me the news that there was a giant tumor in my colon, and that it was probably cancer. THAT should have been that moment, right? It wasn’t. I had never in my life been close to cancer, but I knew that most cancers were curable. That most of them had high survival rates. I had fears for sure, but on some level? I still believed that everything was going to be okay.

The sensation- for me- first crept in when I started googling my biopsy report. Around that time, staring at 50% survival rates, I first began to feel the cold grip of terror. And disbelief. In this moment, I think I might have been somewhere close to the emotional state others have described to me as that moment that “they felt like they were going to die.” It was my first taste of terror. But was that my full-on existential slap? No. Not yet.

A sinking feeling is is not the same as a free fall. It’s just a first taste. Feeling and fearing are not the same as knowing.

The existential slap didn’t come for me until I KNEW, I mean really knew for the first time that I was indeed going to die.

It’s that chilling moment when you realize that you are out of possibilities for mistaken interpretations. You are out of alternate outcomes. This is not just a nightmare and it won’t be okay again after you wake up.That moment is when you realize,Yes, this is really happening and no, there isn’t any way out.

And the moment when that hits you? It’s like no other feeling in the world.

The author of the article describes the sound one of his parents made when breaking the news of his mother’s diagnosis: “There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral.” I’ve made that noise, sitting in my car.

• It’s the fateful mistake that has hurt someone that you can never undo, make better or apologize for.
• It’s waking up on the train realizing that it’s heading off a cliff and there’s no time to react before the fall.
• It’s the life-changing event that you can never turn around.
• It is real, it is there, it can’t be fixed and it can’t be denied.

My existential slap hit the was the moment that I found out with 100% certainty that this had metastasised to my liver. I had read the stats. They could not be denied. I knew I was going to die. That was the quake, but there were still two strong aftershocks to come.

These shocks came in doctors’ offices, after periods of denial; periods of trying to regain hope.

I had been told that I was resectable, then after MRI was told I was not. I had read many stories of survival and believed that it was possible. And then I was told by doctors that I was incurable and that my chances of making it long term were very small.

Slap! Slap! The existential slaps are those moments when you’ve lost all hope, but also haven’t figured out how to land at a place of peace.

The loss of future? That one is the most unsettling of all. Everyone assumes that they will grow old. Everyone assumes that they will retire. Everyone talks about how their children will be when they grow up. Everyone talks about future trips and vacations they will take. Everyone assumes that they have a future.

Go for a day. Any day. Challenge yourself to go the whole day without speaking or even thinking of any events that will occur at any point past, say- the next two years. You might get a glimpse of how completely profoundly this loss of future changes a person.

The following two paragraphs in the article are the ones that especially hit home:

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment.

All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three [My note: All Three] They grieve. [Yes] They grapple with a loss of meaning [Briefly]. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” [An existential crisis is a moment at which an individual questions if their life has meaning, purpose, or value. Source? Wikipedia]

Here is another mind-blowing section of this article that really got to me:

Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. [Yes, yes and yes] The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months {Again, yes. This seems about right.} For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once.

I had surgery to remove my colon tumor on Labor day. My first existential slap was on Columbus Day. Another was after an appointment on Veteran’s Day. I need to stop scheduling appointments on holidays.

Somewhere around mid-December the rawness wore down into a constant low-level depression. I didn’t know if treatment was working. I was facing cold. I was in the thick of chemo. And I was trying to figure out how to live with dying.

But then I began to feel better around the end of December. I wish that I could say that it was coming to a place of peace. I was working on that, to be sure, but can I really give myself credit? I can’t.

I started feeling better because the news started to get better.

• Beacon of hope #1- Chemo was working.
• Beacon of hope #2- It was working enough that I am now resectable.

Remember those islands I spoke of in my first blog post? I am passing them now. I see those islands of hope. They hold the promise of respite. They hold the promise of a future.

But unfortunately, my boat isn’t docking there. There are still many more miles on this journey. I don’t know how many, but the trip is looking to be a longer one now an I am grateful for that. I will have resection surgery. I will have more chemo. And then my journey continues. The real test of how much better I am handling this will come when the news isn’t so great.

Between the nature of the disease and various other prognostic factors unique to me, I am almost certain to have a recurrence. I don’t know when it will be. I don’t know where it will be (lungs? liver? lymph nodes? peritoneum? brain?). I just know that it’s going to happen. And may possibly happen again after that. And again after that. And more likely than not, one of those recurrences- whether it’s the first, second or fourth- is going to kill me. Two years from now? Three years? Five years? Seven? Ten? Forty?

I don’t get to know. I don’t ever get to know. Until, once again, I KNOW.

So how do I live a life on this boat? How does anyone? Everyone has to find a way.

My life as of late has seemed almost normal. Whatever the hell that is now. Normal is work. Normal is family activities. Normal is talking about how your weekend went. Normal is normal, but with a permanent asterisk.

As the palliative care specialist in the article states, “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

• You know that commercial that aired a while back for a depression medication? The medication helps the person turn the giant cloud into just a little cloud of depression that follows her around like a balloon? Death is that cloud.
• Death is the back seat driver. I am steering through life, but death is in the back seat yelling at me to watch where I’m going, and to drive more slowly. Because we don’t know how many miles are left and we don’t want to miss any.
• Death is the secret meeting I’m attending in the basement of my brain while you are talking to me about your future vacation, or about your kids going to college or about how many days you have left until retirement.

I don’t want it to be that way. And it’s nothing against you, but it is what it is. A life in increments. A life of living my best for today. A life after the existential slap.

“I’m love forty down
As the match slips away from me, I need the crowd to pray for me
To turn this one around
I’ve worked far too hard to be this far from victory
I’m battered and I’m bruised
And I can’t afford to lose”

Frank Turner, “Love Forty Down”

From the moment you hear the word “cancer” much of your life experience becomes a series of percentages and numbers. The first percentage that I came across was 6%. I had a 6% chance of making it to at least the 5-year mark with stage IV, CRC. Another published site had those same odds at 15%. Pretty small numbers. And then you have to remember that that’s only the 5-year mark. There are no published statistics for 10-years, but I was told that my shot at making it long term is “very small” because of the incurable nature of my disease and my particular set of “data.”

Then come the waiting rooms, the blood work, the stepping on scales, the blood pressure and temperature checks and of course the incessant repeating of my birthdate over and over (042578, 042578, 042578…). Statistics, Numbers, Data. All unique to me, but at the same time cruelly objectifying. I am a patient with a bar code. Yet I am breathing. My heart is still beating. And my brain? It’s just trying to make sense of it all.

Doctors review your data before they step in the room. And the line that they walk when they speak to you is a very thin one. I don’t want you to lie to me. Please be honest. But it would help if you also not speak to me as if I were already a corpse as well. I am not a statistic. I am not a foregone conclusion. When you tell me that I should see someone to better come to terms with my own mortality, it tells me that you have already decided the ending of this story.

Consider how this feels on the other side of this equation. Doctors are my only hope to get me as long as I can, and I already feel like you’ve given up on me. I need hope. I crave hope. And you’ve given me no grip to latch onto.

I’ve written a lot about the emotional and mental havoc this puts on a person. Am I being too pushy? Too proactive? Asking too many questions? The doctors look annoyed. Am I just in denial?

The momentum of the process, the white coats, the waiting, the numbers- they beat against you like waves. They are intended to lull you into submission. To put you in “patient” mode. Listen to the good doctor. Smile. Do what you are told. And coast along this journey with him until you land at your final inevitable shore of death.

I’ve felt my heart pound out of my chest in waiting rooms. I’ve felt my legs turn into cement, the weight of moving too much to bear- in a doctor’s office after him leaving the room, and on a bench outside the facility. I’ve cried buckets of tears in the car in the parking lot of my driveway trying to get my shit together before going back into the house with my kids.

I even had a panic attack in the middle of a Target after running into a former co-worker and his family. I am probably dying of cancer is not exactly something you bring up in chit chat in front of two small children. I smiled, said I was doing fine. Talked about how much I was enjoying my new job. I held it together until their cart was out of sight, feeling like my chest was caving in on me and the floor sinking beneath me. I strolled the aisles aimlessly, having completely forgotten what I was even looking for or how to find it. I wanted so badly for the mundane story I had just presented to actually be my reality. But it wasn’t.

My stages of grief have been fluid and cyclical. Shock, denial, anger, fear, depression. I’ve cycled through them all. But there is one other that appears to be an essential part of my make-up. Stubbornness. I just don’t have it in me to passively give in. Is this merely my manifestation of the stages described as denial and/or bargaining? Perhaps. But in my view it is a feature that is desperately important for a patient with any serious illness to have.

As I traveled this week to get surgical opinions, I brought a book along with me titled (and yes, I am a nerd), “Me, Myself and Us- The Science of Personality and the Art of Well-Being” by Brian Little. There is a chapter solely dedicated to personality and health. The most important factor when it comes to the relationship between the two, it seems is something called a sense of coherence (SOC). Essentially, this is defined as “the extent to which one has a pervasive, enduring feeling of confidence that one’s environment is predictable and that things will work out as well as can reasonably be expected.” The key is the part at the end about “as can reasonably be expected.”

It all comes back to the serenity prayer, the wisdom of which, endures despite my lack of inclination towards religious endeavours. Grant me the serenity to accept the things I cannot change, change the things I can, and the wisdom to know the difference. As the book describes, “people high on SOC…” are better able to “remain mentally and physically healthy after being exposed to challenges.” We need the three elements of SOC- comprehensibility, manageability, and meaningfulness.

We need something to fight for. We need meaning. We need hope.

I don’t get to tell my cancer whether it will respond to treatment, how aggressive it will be, or where it decides to recur/pop up next. But I DO have a say in how I treat it. That means educating myself, asking questions, being annoying, getting second opinions and advocating for myself to the hilt to ensure my best chances every step of the way.

Over the last 4.5 months, I’ve joined Facebook groups dedicated to different treatment options, researched genomic mutations, and traveled for second and third opinions. I fired my local oncologist. I got a better one. I’ve been very lucky. My disease so far has been very responsive to treatment. That part was out of my control. Now I get to have a say in the next step of my treatment. Which surgeon do I choose? Do I get a chemo infusion pump installed? If they open me up and see any peritoneal disease with their eyes, do I agree to HIPEC (a very intense surgical intervention that literally involves washing out my insides with heated chemo)? How should I weigh my very strong risk of recurrence, given my genomic profile, against the risks of toxicity and other factors from this treatment? I feel confident and educated enough to make these decisions.

This week, I received a whole new set of numbers. I am now one of the lucky one in three that qualifies for a liver resection. That changes my 5- year prognosis from this week’s statistic of 10% to somewhere between 25-60%. How do you like those numbers? I love that they are going up. But that wide range of “data” that I am now entering into says a great deal about how reliable we should consider ANY of those numbers to be. I am not a statistic. I am not a foregone conclusion. My future is unique to me, and all of those factors that play into it. Both outside of my control and within it. And for today, and as long as I can manage, my breath still flows and my heart still beats.

Every new day is a gift, it’s a song of redemption
Any expression of love is the way to return
To that place that I think of so often, but now never mention
The one the voice in the back of my head says that I don’t deserve

Bright Eyes, “Jejune Stars”

1. Eat more fruits and vegetables
2. Eat more nuts
3. Walk, do yoga or some other form of exercise every day.
4. Get better about staying hydrated, especially on chemo weeks.
5. Try to get on more of a consistent sleep schedule (chemo insomnia and post-chemo fatigue make this challenging.)
6. Come up with a system to track symptoms
7. Advocate and be proactive with doctors and research medical options.

Mind/Soul:

1. This year, try to feel and then let go of my negative emotions.  Especially when it comes to emotional reactions to the things and people that I cannot control.  This includes:  Worry, Anger, Fear, Guilt, and Impatience.
2. Meditate every day.
3. Journal Every Day
4. Hug the people I love every day.
5. Spend more time with friends.
6. Have deep conversations, and say how I really feel.
7. Spend more time outdoors and get out into nature as much as possible.
8. Travel
9. Go to concerts.
10. Play (at anything), laugh and have fun.
11. Learn something new.
12. Stare at clouds.

Family/Legacy (some crossover with above):

1. Make special time with each of my kids
2. Make special time with my husband
3. Leave a record of who you are (blog, letters, etc.)
4. Tell people that you love them
5. Find ways to show others that you care
6. Mentor and assist others (at work, or elsewhere)
7. Find ways to give back
8. Prepare for the ending

• Decide end of life plans (hospice, etc.)
• Decide and communicate plans for my body and service after I am gone.
• Read books, talk to a professional, and/or join a support group to help mentally prepare.

Looking them over, many of them are the same as previous years.  Some of them are new.  Some of them have dropped away completely.  A few observations:

1. I’ve done away with weight goals.  I no longer care about losing “x” pounds.  I just want to keep my body as healthy and warm as possible.
2. This is the first year that I’ve written no career goals.  I still plan to give my full self every day to my job, and to mentor and assist others as much as possible.  However, I no longer have any plans for advancement.  And when I leave work every day, it will stay there.  This has been true since my diagnosis.  I am no longer leasing mental space to my career outside of working hours.  Those hours have become far, far too precious for me to waste.
3. Thinking about death is something I should have done long before this year.  As humans we put up a strong mental block to it.  However, it’s important to note that no matter what you plan, they might still change when you find yourself staring directly at it.  Some of mine have already.

2019 will bring many dips and peaks.  I have hope for more peaks, but at the same time doing the deep work to help me through those inevitable dips when they come.  Here’s to a year of the best of everything I have control over:  Health, happiness, peace, and above all- love.

“And all the things I’ve seen behind these tattered seams
And all the upturned faces with the lamplight in their eyes
And each imperfect turn flickers as it burns
It only lasts a moment but for me they’ll never die”

Frank Turner, Balthazar Impresario

The Introduction:

Dear reader, I have a confession to make.  I an unfailingly and unabashedly human.  And as a member of that club, the truth is I really need this.  I need to write this blog.  To find meaning.  To weave this daily dish of the wonderful, the terrible, and the mundane into a greater plot.  Because one of the greatest features of humanity has always been a search for greater meaning.  We are suckers, all of us, for a great story.

The Setting:

Most people find this in religion. I have a tough one with this.  You can tell me all day that there’s a white dude in the clouds with singing angels, and I won’t believe it.  You will also never get me to believe that if there were such an entity as God that he would be so so cruel as to damn anyone to eternal torture for nothing else than not believing in such stories.

The next extreme is a more nihilistic approach, whereby you believe that there is no meaning to any of this.  No.  I can’t buy into that.  I did say I was human after all.  We are too complex for all of that.  We are capable of terrible things and beautiful things and every shade in between.  A daily theatre played out generation by generation as we mesh our individual “stories” together into the greater drama. Can we get our shit together before the rock we inhabit goes to hell?  That remains to be seen.

Let me be clear.  I don’t believe that this is a “just world” or that “good things/bad things happen to good/bad people.”  I know that they don’t.  But I also don’t believe that none of this has meaning.  Or a greater purpose.  The search for meaning and purpose IS, I think what we are about. And why we are all here.  If such a concept of a God exists, it lies in that.

I think that more and more, my belief system is coming down to a simple understanding that we are all in this together.  That we all start at different points.  And that we each take our flawed journey from there.  Those journeys are based upon a moral code- a set of rules- unique to us.  And that code is based upon the stories we tell ourselves.  And those stories?  They are usually founded upon our own ideas of self-worth.

A core belief of my own is that nearly all of the evil projected into the world can be traced back to a child that was not made to feel that he or she was fully loved.  Or that love was conditional.  But there are other factors at play.

The child born to a millionaire tells himself that he is “special” and better than others.  And believes that the things that he does are okay because of that.  The rules don’t apply to him.  God has blessed him.  Or maybe the church of Scientology.

The psychopath feels that he is chosen to do his deeds.  That he is a born predator and his victims deserve their fate.  The drug dealer tells himself that he does what he does because it was the only option available to him.  And besides, his victims know what they are getting into, do they not?  There is a bit of truth and a bit of fiction in most of these stories.  But what we tell ourselves matters.  And it drives everything that we do.

Point of View/Theme:

I don’t stand alone on some lofty tower.  I admit that I am no different.  My stories have always crafted and shaped who I am.  As a child, it was a fantasy story.  I dealt with my feelings of powerlessness by imagining a future where I would “prove them all wrong.”  Future me would look like Barbie.  With long, flowing locks.  And I would be a world-famous actress/artist.  Imagining this mythological future was how I coped.  As I grew older and matured (and also began to discover what my strengths and weaknesses really were) this story evolved.  It became a storyline of continuous growth in the face of adversity.

The Conflict:

I came into this world prematurely, after my mother had appendicitis and the German measles during her pregnancy, yet had no birth defects or disabilities.  I survived a push down the stairs as an infant in a walker with some stitches to the head.  I survived a 25-foot fall from a tree-house at 12 with  5 broken vertebrae and 3 broken leg bones, but could have been easily paralysed.  I survived an out-of-the-blue seizure disorder that gave me grand mal seizures during my senior year of high school and caused me to go on medication for several years, but I grew out of that as well.  Then, of course there is the small matter of surviving an early childhood divorce, family members with mental illness and more moves and reintroductions as the “new kid” than I can count.

Despite all of that, I put myself through college, and created for myself a successful family and career.  I  created for myself the stability I always searched for.
(And no, it was not ALL bootstraps.  There was some some opportunity and luck along the way.  There is in most of our stories.  Most of us just won’t admit it.)

Middle life transitioned in a new phase of this narrative.  I spent my 20s and 30s trying to do the “right thing.”  Along the way, I melded a huge part of my identity into my career.  Approaching 40, I felt that I had earned my voice.  But it hit at the wrong place.  And the wrong time.  And in a toxic culture.  My internal locus put her problem-solving hat on and screamed “Fix it! Fix it! FIX IT!”  I never figured out that there are some things that are unfixable.  That do lie outside of my control.  I was punching air.  To cope, I went to work trying to fix things internally.  I wrote in my journal. I started meditating.  I did these things to better myself and grow, but change wasn’t happening soon enough.  I couldn’t let go of the things I couldn’t control  I never learned how to let go of anything.

The Plot Twist:

My plot twist, of course, came with my cancer diagnosis.  Incurable.  Very little chance of long-term survival.  It shocked me into a perspective I had been unable to gain through any other means.  I quickly figured out how much time in my life I had wasted trying to ‘solve’ things that were simply beyond me to control.

So what the fuck do I do now? 

For the first time in my life, I am looking straight ahead and all I can see is dense fog.  How can I problem-solve the unknown?  I am already searching out contingencies.  What-ifs.  Alternative solutions.  How do I survive this?  Or at least stick it out for as long as I can?

I can’t plan.  Because I don’t know.

I don’t know how aggressive my cancer is.  I don’t know how my body will respond to treatment.  I don’t know yet the extent to which future options will be ruled out for me.  In short, this is my worst nightmare.

The Resolution.  Crafting the final chapter. 

How does my story end?

Well, for starters, I don’t give up.  Giving up has never been a part of my story.  I’m sure as hell not going to let it end that way.

Overcoming cancer would be the happiest ending… but I can’t write an ending that I ultimately have no control over.  But perhaps that’s the point.

If I can’t overcome, I can at least find a way to grow.  I can use this time to grow internally.  To try to become a better person.

And perhaps my greatest challenge of all?  To learn how to let go.  That’s easier said than done, my friends.  I’ve battled my way through 40 years of story with my internal locus on overdrive.  Learning how to toss that away will be one of the hardest things I could ever attempt to do.

The stage is set.  I am sitting at the wheel.  And all I see before me is that thick, dense fog.  I have to breathe, to hit the gas anyway.  I have to learn how to accept the things I cannot change and let that murky path be what it will be.  There will be patches of clarity, and decision points along the way, and I will be there to meet them.  But I can’t throw punches at the clouds any more.  There is not enough time left for that.

Is my protagonist up for this final lesson?  The first tests will come after the first of the year.  Here’s hoping I can rise to the challenge.

“Are they tears or is it rain?
Doesn’t matter anymore
In the end they’re both the same
We’re less filthy than before
Didn’t ask for a downpour
Didn’t need a flood
Still I think I found the answer somewhere in the mud”

Frightened Rabbit, “Rained On.”

On a Thursday in December I find myself at the bottom of another valley. Between cycles 4 and 5 of chemo.  Waiting for the holidays.  Waiting for what comes after the holidays. Waiting for the set of scans in my peritoneum and the rest of my body.

Waiting to find out news that will either give me a sliver of hope or reprieve for the first time since my diagnosis or send me reeling once more into panic and despair.

I honestly have no idea which way this one will go.  I have lost all shreds of any false sense of faith that I’ve had all of my life that things will somehow still be okay in the end.

All of my life has been about working toward better things in the future. Now I know that they will not be better. I’ve never experienced that before. It’s an unrelenting sensation that the future will only bring sadness.  These words aren’t mine. They are my husband’s.

Cancer hasn’t just changed me. It’s changed him.

What I do know is that those scans will show what they will show.  Neither of us have the power or control to change any of it. In this valley of waiting there is uncertainty.  In this valley of waiting, we can only look up at the looming clouds and wonder what is behind them.

Since I’m waiting, and the sky seems especially dark, I want to try an exercise. I am going to look directly at those clouds, squint my eyes for a moment and try to find some silver linings. If, for no other reason than that it feels bad to feel bad. And it certainly isn’t helping anything. So here we go.

Silver lining number one– is that this experience has re-affirmed that the person I chose to spend my life with was the right one. . I realize that nobody in this world has ever loved me more. I realize that he has loved me even during times that I have felt like I have not been deserving of such love.

Silver lining number two. I’m doing parenting okay.  And giving them things I struggled to have as a child.

I have brought into this world three of the most unique and spirited children that I could have ever have hoped to imagine. What’s funny is that during the early years of my marriage, I probably could have been talked into not having any at all. I wasn’t sure that I could live up to the ideal of motherhood. I’m still not sure. I proudly wear a t-shirt that says “world’s okayest Mom.”  Because I know that I’m not the best. But I do know that I love them all with every fiber of my being. Unconditionally.  And I know that they know that as well.

I can’t say that I always felt that way growing up. I remember virtually nothing from the first six years of my life. Those were the years of my (bio) parents marriage, their divorce, and mom’s time being single and dating, and poor.  Nearly everything is blank.  Of course, there are the stories and lore- of my bio-dad’s deliberate cruelty (throwing my brother’s Lincoln Logs while he was playing with them into the fireplace after coming home in a bad mood, turning off the hot water while my Mom took a shower, thinking hitting was okay as long as he only did it with an open fist, etc).  After the divorce, he wouldn’t pay child support and Mom wore her decision to not get any ‘welfare’ a badge of honor that she told anyone who would listen. We lived on square cheese and balogna sandwiches, rice and soy sauce, Spaghettios and Mrs. Grass’s noodle soup. Mom just didn’t eat.  She wore that as a badge of honor too.

Things changed a bit when she started dating this big and goofy guy (who she would later marry and who became a cornerstone in my life).  He’d let me use his belly as a pillow, and tickle my feet. I remember that he brought me to meet his parents and they arranged a large scavenger hunt on their farm at Easter and at the end I found a basket of Barbies. Just for me. Nobody had ever done anything like that for me before, much less people I barely knew.  There were no strings attached.  They did it because they cared, because they wanted me to know that they wanted nothing more than to become my grandparents.

My kids get to know this love every day.  I have done that right.  My reward is getting to see the amazing people they are growing into.   I am just the right Mom for them. The right Mom to teach Audrey to stand up for what she believes in. To encourage her to continue writing and drawing.  The right Mom to teach Lucy to use her natural social talents for good. To remind her to use her big heart with every action she takes. To act first with that heart and not her emotions (jealousy, hurt, and fear). I am the right Mom to stand up for Jack when I see him dumped from preschool to preschool because he is challenging. To get him the diagnosis he needs. To get him the support and treatment he needs. So that I can fight for him when teachers label him. So that I can lift up the self-esteem of a boy who has been programmed to believe that he is “bad” and has begun to stop trying. So that I can see him grow into the confident, happy, and gifted third grader that I see today.

No, I am not the world’s best Mom. But I am the world’s best possible Mom for MY kids.

Silver lining number 3 is that my kids are old enough to remember me when I am gone. It breaks my heart to hear from other young mothers diagnosed with cancer with very young children or babies. They don’t know whether they will be here long enough for their kids to be old enough to remember them. Just thinking about that breaks me.

Silver lining number 4 is that my husband will take care of them when I’m gone, and continue to steer my children to the best possible versions of their amazing selves. Because he is the world’s best Dad for them.

Silver lining number 5 is that I’ve stopped caring what others think about me. I don’t care whether you, reader, like this blog post, or whether somebody thinks that I am oversharing. Or whether somebody thinks that I am handling my diagnosis the right way.  Do you hear that reader?  I don’t care. This is me.  I spent a good deal of my life suppressing me, because I thought that letting myself out could only result in a rejection of that me.

Guess what?  There’s no time left for that nonsense. Like me or don’t. Love me or don’t. This is the me that I’ve become.  What life, and pending death have made me.

Silver number 6. The silver lining to the awful, seizing trap that is a stage IV cancer diagnosis is a form of complete freedom. I am freer because I now have less to lose by taking risks than ever before.

Silver lining number 7. I have discovered and seen so much love, and so much goodness from others in the past few months. Before this, I honestly didn’t think that many people outside of my family unit- the one that I created- cared about me. What’s more is that I convinced myself that I didn’t care that they didn’t care. Because I didn’t need it.  I had made some grand deal with society that I would always take care of myself. And that I didn’t need to depend on others. That mindset came from my chaotic childhood, and I spent my adult life trying to find little ways to challenge that belief.  I succeeded a bit, but I let myself off too easy so this growth was slow.

Impending death sped that up quite a bit.  I had a sudden, overwhelming fear of dying alone. Of going out as a single drop. One that would reach the end of my household and then dissipate into nothingness. I would then be only a story of what happened to Lonnie’s daughter to distant relatives. Or a story of what happened to that girl they worked with once.  Or a story of what happened to a girl they they knew in school. And life would go on as normal with the turn of conversation.  While that is still an inevitable likelihood for many to most of the people who knew me, my silver lining was discovering how many people actually DID care more than that. My friends, my family. They offered me hugs and stayed patient with me through those roughest early weeks when nothing anyone said could ever fit what I needed to hear. I discovered that I was loved. And I admitted that I loved them back.

I realized how much I did need these people, and always had even despite the stories I told myself that I didn’t. Before, I was terrified of needing anyone who might reject me. Who might make me feel vulnerable, or not self-sufficient. My silver lining to losing my future is more love than I ever needed for the time I have left. That silver lining shattered all of the walls I carefully constructed around my heart and has freed me to let go and love back without fear.

Silver lining number 8 is letting go of everyone else. There is still enough resistance in me to refuse to be anyone’s Christian duty or obligation of any kind. I have a knack for weeding out fake people. For weeding out people with selfish agendas. For weeding out people who just want to hear the story to tell someone else. Go rubberneck in someone else’s tragedy. I am not a story, I am a human being.

Silver lining number 9 is letting go of spending time on things that don’t matter. Of staying late at work to try to please someone who already doesn’t like me. Or going through emails from every place I’ve ever subscribed to or shopped at, which brings me to…

Silver lining number 10 is doing things that do matter.  This is allowing myself to “Do” me.  Starting a blog that shows people me- unfettered- while giving me an outlet for my emotions. Spending time with friends and family. And letting myself “do” me. I don’t ever tell my kids to change who they are. I just tell them to be their best selves, and to use their unique talents for good. But there has always an asterisk or excuse for not fully applying that rule to myself.

Me doing me is writing an honest, direct review of a doctor who is not up to par and publishing it because people need to know and deserve better.

Me doing me is learning everything I can do to learn about ADHD, so that I can save my son from being marginalized and making sure that his needs get met.

Me doing me is is being honest with my my boss and telling him that he has put so many restrictions on me regarding how and when I am allowed to communicate with my project team that I can’t do my job effectively and that he is setting me up for failure. He was. He needed to hear that.  Even if he turned it back on me, casually used derogatory labels, and found petty ways to retaliate.  I should have done more.

Me doing me will not be most peoples’ cup of tea. It will make them uncomfortable. They will see any form of directness as a bad thing. It makes lots of people not like me much. But the world needs someone who will do these things, so I’m okay with that. You do you, and I’ll keep doing me.

These clouds are scary, dark and looming.  Cancer is hard. Cancer is heartbreaking. Cancer is physically and mentally exhausting. Cancer took away my future. I am sick as fuck of Cancer.

But if silver linings are all I have? If silver linings keep me together, and keep me sane? I’ll take them. And make the fucking most I can out of each and every one of them.

“Don’t you worry.  All things must end.  There are sunlit uplands around the river bend.”     Frank Turner, “Glorious You”

“There is light, but there’s a tunnel to crawl through.  There is love, but it’s misery loves you.  We’ve still got hope, so I think we’ll be fine in these disastrous times, disastrous times.”    Frightened Rabbit, “The Oil Slick”

I have always turned to music as a means of coping.  The music, lyrics and tone take me on a journey, each time, through the darkness and lead me to the light on the other side.  These days, I catch myself singing along, only to get caught stuck on the ending.

As I enter my fourth month since my whole life changed, the peaks and valleys still exist, but the rest had settled into a dull overall depression.  At first, I would keep forgetting and then get tossed back into reality.  I still do, but less so now.  The lyrics that brought me through challenges in the past didn’t prepare me for this.

Getting to the end, I stop and realize that the end of my struggles will not bring sunlit uplands after all.  No new beginnings.  No shining moment where I can reap the lessons learned and embrace the rest of my life with a brand new vigor.  These lyrics have failed me.

What’s left, of course, is sucking the marrow out of the life that is left.  I know that.  I understand that.  But first I have to make room for grieving everything that I’ve lost.

Today, I grieve driving lessons, first loves, and high school accomplishments.

Today, I grieve seeing my children become adults.  Seeing them come of age and find their way in the world.  I grieve seeing them leave for college and choosing careers.

Today, I grieve seeing them become parents themselves, and getting to know my grandchildren.

Today, I grieve growing old with my husband.  I grieve being able to talk about and imagine our life after raising children.  There is no longer talk about a lake house.  Or where we might like to travel, or of how we want to spend our retired life together.  I grieve for his loss as much as I grieve for mine.

I bawl at the sight of an old couple holding hands.  I sigh at the sound of a co-worker counting days until retirement.  I never imagined that these things would not be for me.

I picture the life that will go on after I’ve left it, and feel only deep sorrow for having to leave.  I have to start thinking about how I want to die.  And should I be cremated?  And what to do with my ashes?  How do I want to be remembered?  But all I can think of is, “I don’t WANT to leave.  I just want to be near you.”

I cannot see a beauty in leaving my family before I am ready.  I don’t think I ever will.  This is not a part of great plan.  It is merely a showcase of the arbitrary nature of the human life.

I have listened to songs and stories in the past that deal with death, and have found beauty in many of them in the abstract.  Real death, right in front of me, at least for the time being, has stolen their beauty.  Ten years ago, I might have whimsically mused at playing Death Cab’s “I will follow you into the dark” at my funeral:

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
Then I’ll follow you into the dark

These days I can’t even listen to it.  I’d always pictured two old people saying goodbye after a life together.  I never pictured leaving this way.

Then there’s Bright Eyes’ “Easy, Lucky, Free”:

I always figured there’d be time enough
I never let it get me down
But I can’t help it now
Looking for faces in the clouds
I’ve got some friends I barely see
But we’re all planning to meet
We’ll lay in bags as dead as leaves
All together for eternity

But don’t you weep
(Don’t you weep for us)
Don’t you weep
(Don’t you weep)
There is nothing as lucky
As easy
Or free

This one feels slightly less empty, at least in it’s emphasis that there is no longer pain; or a struggle after we’ve left.  But lucky, easy, free?  Nope!  I’m not there yet.

Of course, I know that there is still possibly hope.  It might even just take one scan that goes in the right direction for once, instead of taking a turn for the worse.  The problem is that I just haven’t had any of those yet, and it’s left me seeing more of the darkness lately than the light.

I know that the sunlit uplands could still be in those yet to be seen positive scans.  In those moments of reprieve.  Long-term dreams have abandoned me, but the days and the moments haven’t yet.

As much as grief is a process that I must go through, I hope that it’s purpose can bring me closer to something resembling acceptance.

And that I don’t forget to enjoy every reprieve, every hope, and every moment of joy that comes along the way.

I can see that on the horizon, and catch fleeting moments of the feeling on the breeze.  But today?  I have to grieve.

“So fuck you Hollywood
For teaching us that love was free and easy
For dressing all our daughters as princesses
For gulling us with tales of happy endings…”

Frank Turner, “Good and Gone”

“The Crumpled Ocean is No Boat Trip” – Frightened Rabbit, “The Wrestle”

I wake up to rocking.  I catch my breath, rise and look around.  I am on a boat, surrounded by water on all sides.  I can see the dock of the port we just left behind me.  “Hey! Hey!  I didn’t mean to get on! Can we please go back?  I need to get off!” But the boat keeps moving.  I realize that I am trapped.

Just three months ago, I was sitting at home with what I thought was a nasty stomach bug.  At the time, the word “cancer” was about as far from my brain as humanly possible. Instead, I sat on the couch (feeling guilty about missing work) and watched Outlander through severe abdominal pain.  Pain which eventually turned into frequent, severe vomiting.

I’m not going to provide you all of the details (and you also don’t want to hear them), but I found my way to an ER and got admitted.  I felt terrible, but figured they would solve it, and I would be able to get back to life as usual.  They did a CT scan the next day.  My husband brought the kids to visit, and the nurses said that the on-call doctor wanted to speak with me on the phone.  The news floored me.  They had found a mass in my colon that was too big to be benign, and it would require surgery to remove it.

As shocking as this was, I didn’t fall apart.  This was all still very surreal.  The surgeon who visited me the next day was like a “folksy” version of an older Dick Van Dyke.  His tone was optimistic and confident.  He told me that there would most likely be chemo afterwards to prevent recurrence.  Okay.  This is scary, but I’ve got this.  I’m young!  And the doctor smiles a lot.  This is going to suck, but I’ve got this.  Two weeks ago I was canoeing with my family and friends.  Tomorrow I am getting surgery.  A couple of weeks from now I will be back at work.  A couple of months from now, I will be done with cancer.

A wave hits the boat and knocks me over.  Lesson #1 about Cancer: You can’t count on doctors to explain everything to you.  Especially when the news is bad.

There had been a spot on my liver, but it was probably a hemangioma.  The surgeon told me that he had a good look around when he had me open.  He bragged about how he had cleared all of the margins, and how he had found a tiny nodule in the Peritoneum (abdominal cavity) but had removed it.  He was sure that the spot on my liver was a hemangioma.  What I heard was “Everything is clear!  On to some mop-up chemo then I should be fine!”

When my biopsy report was handed to me, the surgeon ran his finger over some of the paragraphs.  “it’s a long report, but you want to pay attention to the sections on this page.”  There was no alarm in his voice, no indication that this report was dire.  I nodded.  Honestly, at the time I was more frustrated by being in the hospital, and entirely focused on getting out of there.

I find my bearings and start to rise, but another wave hits.  I lurch over the rails and the wind is knocked out of my body.

Alone in my house, and surrounded by quiet I started googling my biopsy report.  I focused on the technical details associated with the colon tumor.  11 of 18 lymph nodes positive means Stage IIIC, which has a 53% 5-year survival rate.  Wait. That CAN’T be true.  There was NOTHING either said or signaled to me when this report was handed over that indicated that I had a 50/50 shot of living.  I MUST be misunderstanding this.

For the first time, something cracked, and now the panic was seeping in.  Even if I was wrong and my staging was slightly better I was still looking at maybe a 70% shot at best.  Hey, those are good odds, right?

If you think so, I’ll hand you a pair of dice to roll on YOUR life and then you can tell me how positive you feel.

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.

I didn’t see an Oncologist until two weeks after leaving the hospital, and a full month after my diagnosis.

Yes, you read that right.  My Oncologist came into the room in a rush.  He assumed that someone had explained my biopsy report.  “We can possibly cure some Stage III and IV cancers.”  Wait, what?  Well, I guess that confirms Stage III, but why is he talking about Stage IV???  “Well, of course there was that spot on your liver that needs to be taken a look at.”  You mean the Hemangioma?  “Well, I know that’s what he put in his report, but we’ll need to do a PET Scan to be sure.”

I puke down the sides of the rails.

Going into the PET I had a sense of foreboding.  There was something about the Oncologist’s demeanor.  He didn’t believe that the liver spot was a hemangioma.  I found out later after getting the hospital CT reports that it had indicated that there were more masses found which were noted to be ‘suspicious for carcinoma.’

My husband and I spent the weekend after the scan and before getting results exchanging looks of fear.  We parked the car in the parking lot, listening to a feed of the band Chvrches playing a music festival.  “I know that there is a lot of bad shit going on in the world right now.  So everybody- at the count of three- scream the word ‘Fuck’ at the top of your lungs!  1, 2, 3…”  We both screamed, but it wasn’t nearly as cathartic as we wanted it to be.

The boat is STILL rocking.  When is this going to end?  Can this really be happening?  I WANT OFF.  Nobody is listening.

“The PET did show activity in the liver.”  SIX masses, including my “hemangioma,” lit up like a Christmas tree.  I couldn’t even get to the car.  I sat on a bench outside the office, stared into the distance and repeated flatly over and over.  What do I do now?  How do I just go home?  Go to the store?  How do I even breathe?  Of course, I had read the statistics on Stage IV colon cancer.  They were really bad.  Really, really bad.

The boat continues it’s steady, plodding thrust forward.  I look behind me.  We’ve traveled too far now to see signs of the land that I left.  I run to look out the side.  Is that land?  Or are my eyes just tricking me?  My head says “no,” but my heart still clings to hope.

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.  Uncertainty is your new normal.  You have to find ways to cope or you will go insane.

I processed it that day by writing about it, and then posting what I had written to Facebook.  This was the first time that I had poured something so vulnerable into a public forum.  I know that sounds strange, but writing about it was the ONLY way I knew how to free myself from paralysis.  To continue breathing.  To make my arms and limbs go through the motions of coming home to my kids and tending to the minutia of an evening routine.

My thoughts were racing, formless- and so were my feelings.  Writing them out forced structure.  Other than family, it was the one thing I found to grasp onto as a means of dealing with this.

I also searched for hope online.  And got suckered in.  Hope started to buoy me despite myself.

There were so many stories of people making it many years with Stage IV.  Perhaps I can beat this after all!  Don’t get me wrong, I was still very scared but that thread of hope still crept in anyway.  I had seen a surgeon locally who thought that I was resectable, but first he wanted an MRI.

And then there was the matter of that nodule in the Peritoneum.  Remember that?  “Well, we aren’t certain that’s all there was- the first surgery was an urgent situation and he might not have gotten to see it all.”

I’m holding on tight, waiting for the Ocean to settle down.  For signs of hope on the horizon.  Nothing settles.  The waves keep hitting like sucker punches.  The cumulative effect grinds away at me until I fall back down again.

The next month brought several more setbacks:

• Genomic testing confirmed that I was resistant to certain medications that could help down the line.
• Second opinion oncologist tells me that I should see someone to help me deal with my own mortality.
• Second opinion surgeon is the first to explain MRI.  6 Spots are now 10-11.  We are now looking at multiple surgeries and solutions instead of one simple one.  A return to the initial surgeon who ordered confirms this.  Words heard from both surgeons were that “chances of long term survival are very small” and “I was able to get similar cases an extra 2 years- I did have one last 8, but that was an exception.”
• Third opinion oncologist: “Considering the Peritoneal Involvement and your Number of Positive Lymph Nodes, data doesn’t support a Cure.”

God-damn it.  STOP!  You win, okay?  I get it now.  It’s finally gotten through to me.  I’m never going back again, and the shore ahead?  It’s not one that I want to reach.  I am NOT getting out of this alive.  So now what?

I do chemo.  I get an MRI on my abdomen.  I meet with some surgeons at the Cleveland Clinic.  I consider heading out to MSK.  I do whatever the hell I can to stay here as long as I can.

And I write about it.  I write, to keep me sane.  To cement the sadness and fear into structure.  To spin despair into hope.  To find meaning in all of this.  To figure out how to LIVE when doctors tell you that you are dying.

Part of that living is realizing- now more than ever- that life is too short to avoid taking risks.  Or to not express how you are feeling, in this moment.. and the next one.  That brings me to this blog.

I have no idea where it goes from here, what tone it will take, or whether anyone will even read it beyond myself.  But whatever it becomes will be 100% real, because there’s no time for anything else.