Pain Pills in Paradise

Soaking the midnight songs in the half  light or real life

I just want to make believe

Given hope in the form of a Christmas light, no real life

I just want to make believe

Frightened Rabbit, “No Real Life”

It started on the plane trip out.  I had been staring out the window and contemplating- as many of us do- how all of the tiny lights kept getting smaller and smaller upon take-off.  First, tangible trucks, cars, and buildings.  Then just patterns of light.  White lights lined up one way, red lights lined up the other.  Ants marching in to the rhythm of the commute to their workplaces on a Monday morning.  Before the sun had even crested up over the horizon, the lights were busily on their way toward a fruitful day of productivity.  I, however, was not.  I was on my way to vacation to Kauai, HI.  I was bound for far out into the Pacific.  Far, far away from real life.  And, I was hoping, far away mentally from my cancer.

But then the plane shook.  Just normal turbulence.  My stomach soared above my abdomen for a moment before settling back down again into it’s normal place of residence.  And then?  That familiar pain in the right lower quadrant.  My tumor was getting angry.  It was time for my pain medication and for a mental trip back to reality.  I drifted from excitement over the trip of a lifetime back to familiar fears.  Fears of a tumor growing, seemingly unchecked, and ready to steal away any number of things that are important to me.  Fears that the pain might keep getting worse once I get back from my trip.  Fears that my surgeons might not be able to or might not want to operate.  The fear lasts longer than it takes for the Oxycodone to wipe away the pain.  It dulled, but didn’t go away completely.  Not even as I stood out on my hotel balcony looking out at palm trees, swans, and the beautiful ebb and flow of the ocean.  But it did go away later that night, and for the most part stayed away.

For those concerned that I let pain and fear overcome and dampen my entire vacation, I will stop right now and assure you that it did not.  In fact, I was able to live without it during the vast majority (90-95%) of this trip.  I relaxed.  I was happy.  I free-floated away on an inflatable raft in a saltwater lagoon.  I laughed with shear joy at a school of dolphins racing our catamaran.  I felt the current of freshwater streams rushing downhill from the hills and mountains and into the ocean tide.  I gasped at the beauty of Waimea Canyon and the Na pali Coast from air, land and sea.  I enjoyed local cuisine.  I soaked up the sun.  I looked upon the vast Pacific Ocean- the same view that my husband had seen 23 years earlier when he decided that he wanted to spend the rest of his life with me- and got swept up in the beauty of it all.  There were more of these moments than I can count.  It truly was my trip of a lifetime.

But in the in-between, there were other moments.  Moments where I once again got behind on my pain medication and found myself curled up in a ball in the hotel bed waiting for the pain to pass.  Then there was receiving a phone call from the Cleveland Clinic notifying me that my consult with the colon surgeon- the one that I had painstakingly arranged between the visit with the liver surgeon and oncologist on the same day- would need to be rescheduled. When I had already waited too long to see him. Just another reminder that what qualifies for me as a crisis doesn’t even show up on the radar of my highly accoladed specialist.

Then there was the dinner where, after a few days of not really speaking of the big IT, the inevitable finally came up in conversation.  A rare second week away from chemo, I let a few drinks flow and let the tears fall out with my words.  Expressing my sadness about the reality of having to lose everyone.  To not get to be a part of their futures.  The waitress must have wondered the reasoning for the tears in paradise because she came back and gave us a free dessert.

And finally, there was this occasion- the one where I realized about ten minutes into my once-in-a-lifetime helicopter tour of Kauai that my ostomy bag has burst and was leaking.  I spent the the next hour of the tour trying to relax and enjoy the scenery despite the knowledge that I was defecating all over my underwear, shorts and t-shirt through my ostomy. I’ve had this happen many times before, but never in such close quarters. And never when I can’t excuse myself to take care of it.

But you know what?  Despite all of that going down, I was somehow still okay.  I was even better than okay because I was able to compartmentalize that part of my brain to the point that I was in awe of the natural beauty and enjoyed the tour.  I could have let this consume me and ruin my entire day.  But the truth is, I simply can’t afford to do that any more.  This tour was too valuable and the day was too valuable for me to let that happen.  I used to let the potential for public humiliation influence my mood a great deal.  Now it barely shows up on radar.  Especially when it comes to things that i literally have no control over.  As horrible as it was, I didn’t cause it, and in that time and place I also had no control over it.  So I put it in its’ place, downplayed it, and focused on the beauty instead.

Let that sink in for a minute. I was covered in my own feces and still able to redirect my thoughts to the awe and beauty of Kauai.

If there were ever a scenario to describe how much my perspective on life in general has changed since my diagnosis with this terminal disease, this one would be it.  In the grand scheme of things, I knew that this wasn’t something that would put me in the hospital. So I did my best to not call attention to it.  And everyone else?  They were also so focused on the beauty that they didn’t notice either.  And with air free-flowing through the helicopter there was also no noticeable odor.  There were no medical evacuations, early ends to vacation, changes to my ability to use chemo, or anything else that could threaten my life.

I CAN clean myself up and change my clothes. I CAN’T change or clean up my prognosis. I CAN’T make it so that I won’t die and leave my husband and kids behind.

So it was a SMALL problem.  And it was a perfect day in paradise.

As we traveled back from vacation, I regretted leaving behind the fantasy and the beauty of it.  But I missed my kids.  There is no comfort substitution for the smell of the tops of their heads, and the feel of their arms around mine.  We left Kauai on a Monday evening, and arrived in Ohio on a Tuesday afternoon.  I looked out the window to see the same tiny cars on highways. Red lights one way, white lights another. That familiar rhythm.  Ants marching home from work to their families, anticipating the mundane paradise of a welcome home hug and a kiss.

The Waiting Place

I used to write
I used to write letters
I used to sign my name
I used to sleep at night
Before the flashing lights settled deep in my brain
But by the time we met
By the time we met
The times had already changed
So I never wrote a letter
I never took my true heart
I never wrote it down
So when the lights cut out
I was lost standing in the wilderness downtown
Now our lives are changing fast
Now our lives are changing fast
Hope that something pure can last
Hope that something pure can last
It seems strange
How we used to wait for letters to arrive
But what’s stranger still
Is how something so small can keep you alive
We used to wait
We used to waste hours just walkin’ around
We used to wait
All those wasted lives in the wilderness downtown
Ooooo we used to wait
Ooooo we used to wait
Ooooo we used to wait
Sometimes it never came (we used to wait)
Sometimes it never came (we used to wait)
Still moving through the pain
I’m gonna write a letter to my true love
I’m gonna sign my name
Like a patient on a table
I wanna walk again
Gonna move through the pain
Now our lives are changing fast
Now our lives are changing fast
Hope that something pure can last
Hope that something pure can last
Ooooo we used to wait
Ooooo we used to wait
Ooooo we used to wait
Sometimes it never came (we used to wait)
Sometimes it never came (we used to wait)
Still moving through the pain
We used to wait
We used to wait
We used to wait
We used to wait for it
We used to wait for it
Now we’re screaming
Sing the chorus again
We used to wait for it
We used to wait for it
Now we’re screaming
Sing the chorus again
I used to wait for it
I used to wait for it
Hear my voice screaming
Sing the chorus again

Wait for it
Wait for it
Wait for it

Arcade Fire “We Used to Wait”

I have always hated waiting. I found the inefficiency infuriating. Waiting for the car in front of me to go faster. Waiting for the drive thru or the checkout lane to go faster. Waiting for the website to load. So much time wasted. I needed the line to move. I needed the website to load. I needed that tiny rush of adrenaline to ping in my brain. I needed that sweet feeling of productivity.

I wanted the thrill of singing along with the chorus. But I missed the fact that the true meaning of the song was written in each verse.

Who doesn’t like to belt out “Born in USA” at the top of our lungs, expressing our pride to be an American? We all totally missed the fact that the verses were all about the failed myth of the American dream. How quintessentially American.

We, as an entire culture just cannot bear to wait. We must be productive! If time is passing and we aren’t being producing something then we have wasted it. We are failing. I bought into this belief as well. And as a result? I spent an awful lot of time being frustrated and angry. I was angry at the stupidity of the drivers in the car in front of me. I was frustrated by the slow programs and systems at work that only made our jobs harder. Sometimes for a few seconds. Sometimes for a few minutes. Sometimes the momentary frustration could be carried for hours.

Seconds, minutes, hours of life wasted. Seconds, minutes, and hours of life.

When we step back and look at this from a distance we realize huge chunks of our lives are in the waiting place. And if they are chunks of wasted time, it’s not because because we aren’t being productive. It’s because we waste that time being angry and frustrated.

While we were busy screaming for the next chorus, we completely missed the fact that life itself was in all of the verses between.

About this time last year, I was finally letting it sink through that I wasn’t going to get out of this diagnosis alive. I was processing that the generic median life expectancy after a stage 4 colon cancer diagnosis is about 2 years. Just like that, I went from expecting 40+ years to hoping for 2, maybe more if I manage to finish in the top half of the class. And making it to 5 years will require finishing in the top 15%. Tall order. Especially with so many individual prognostic factors working against me.

That shift in perspective can best be described as an earthquake. Everything I knew about my life and my future was shaken to the core. After the big one, I was left shaking and disoriented. And there were still more aftershocks to come.

My entire foundation had been irreparably broken and those cracks would never be healed. Certain phrases- especially those associated with future events- disappeared permanently from my vernacular.

There was another phrase that I stopped uttering: I can’t wait.

All desire to jump ahead to future events disappeared. When your remaining lifespan moves from decades to, at best, years you begin to realize very quickly that you can wait. Because life, my friends, is in the waiting. It’s in the waiting for the next scan. It’s in the waiting for the drive to be over. It’s in the waiting for the next season. It’s in the waiting for the next vacation.

Right now I am in the waiting place. I am waiting for surgical consults that could literally decide whether I have months to go or years. I am waiting to leave for a week long trip to Hawaii to celebrate our 20th anniversary 8 months early.

We leave tomorrow. But I need to celebrate today. I can wait.

Sunshine Blogger Award

sunshine-blogger-award

I’ve used a lot of metaphors in my blog. I’ve written about sea voyages, air travel, driving. All of them into journeys into frightening storms and dense fog. I’ve even written about hope for bluer skies. One thing that I haven’t mentioned much is sunshine. That’s because it can seem hard to come by with a terminal cancer diagnosis.

And so it struck me as no small irony that my fellow blogger, Kristi Konsuer would nominate me for the “Sunshine Blogger Award”. She documents her own experience with late stage cancer in her blog, Finding a Way

I’m honored by the nomination, because the truth is that there are days of sunshine mixed in with the clouds. Days we are with our friends and families. Days of living while alive, seeped in a moment and forgetting- just for an instant-that we are on a quicker path toward that endpoint. So I welcome the opportunity to mix a little bit of sunshine in with the storms and clouds.

So, what is the Sunshine Blogger Award, exactly?

The Sunshine Blogger Award is an award of recognition given to bloggers from fellow bloggers. It recognizes those who are creative, positive, and inspiring. It celebrates people who spread sunshine.

What are the Rules?

-Thank the person who nominated you and provide a link back to their blogging sites

-Answer their questions

-Nominate up to 11 other bloggers and ask them 11 new questions

-Notify the nominees about their nomination via their blog or social media

-List the rules and display the Sunshine Blogger Award logo in your post
My Answers to Kristi’s Questions:

What is your favorite dessert and why?

My favorite dessert is Angel Food Cake with fresh strawberries and whipped cream. It’s just so fresh and light and gives the perfect illusion of being healthy even though in reality it may not be.

Who was your favorite teacher (K-12) and why?

My favorite teacher of all time is my 8th grade English and 9th grade Speech teacher, Mrs. Cook. She called on the quiet girl in class and exclaimed, “She can read!”. After that she took an interest in me by encouraging me to sign up for Speech class as an elective the following year, encouraged me to enter competitions, and gave me the quirky role of a question mark in the end of the year class play. She saw through to my talents and actively encouraged them, waking up to an appreciation for writing, for literature and for theater.

What is the best advice you’ve ever been given?

I struggle, honestly with picking a single piece of advice from any one person. Probably the best advice I have seen or read is to always stay true to yourself, even when others reject that self. If they don’t accept you then it is all the more easy to discover who is on your tribe and who isn’t.

When was the last time you laughed really hard? What caused it?

Again, hard to pick a specific instance. My kids crack me up more than anything, and that occurs on almost a daily basis. On a darker note, I reached a point a few months ago where things seemed especially low, and it felt a bit like people were eulogizing me before my time. I felt pretty low, but found a clip on YouTube of the “Not Dead Yet” scene from Monty Python and the Holy Grail, posted it, and rolled on the floor with belly laughs. I guess that my whole self just needed to slap out of the seriousness and that is what set it off.

What do you enjoy most about the writing process?

Words, words and more words! As an English Literature major in college, my favorite books were always the ones with descriptive passages that pull you in. The one that create a feeling with the power of words that make you feel like you are right there in the character’s shoes. Feeling what they are feeling. I’m an avid music fan as well an I’m fascinated by the the ways an author or songwriter uses words that might not even have a literal meaning, but nonetheless still evoke a feeling that we can step into, and wrap around ourselves.

In my own writing I seek to do this. I want the reader to step into my shoes and to feel what I am feeling.

And here’s another thing. Scott Hutchison, from the band Frightened Rabbit said that his songwriting was a form of therapy for him. That the act of pulling the swirling thoughts and emotions out of his heart and mind and forcing them into the structure of a song made them tangible, defined, real-and therefore also more meaningful and manageable for him.

When I organize my thoughts and emotions into something for you to read I do the same thing. It’s public therapy through blogging.

Where (or when) do you feel happiest?

I feel happiest when I am sharing happiness with my family. Nothing gives me more joy than seeing joy on my children’s faces. I feel great happiness in the act of an embrace or snuggle from my husband or kids. I feel happiest when experiencing the world with them. Going on vacations, dancing, watching the sunset, having deep conversations with my family and friends. That is the stuff of life.

Where in life do you find inspiration?

Through pain. Through joy. Through a quiet moment by myself or out in nature. Through listening to some really good music.

When did you feel like a grown-up?

I’m not sure that I can name a specific time, because for me, it happened so young. I vaguely remember feeling like a kid, but in most of my memories after that I guess that I almost always felt like a grown-up in a child’s body.

If you could fix one problem in the world, what would it be?

Honestly? I believe that the majority of all of the world’s problems can be traced back to children who weren’t given love as a child. Or who were given love unconditionally. These people then grow up to be adults who continually act and react to the world based upon those holes in what should be the fundamental building block of their sense of self and sense of security. So yeah, making sure that every child gets love. The one and only true way to fix the rest of the world.

Who would you invite to a dinner party if you could choose 5 famous people living today? Short reasons for each would be welcomed.

(The late) Scott Hutchison, Frank Turner, Ben Gibberd, Matt Berninger, and Conor Oberst. All fantastic indie songwriters and lyricists. There would be great food and drinks in an outdoor setting with greenery. And there would be acoustic guitars. We would talk about the songwriting process, play with words, and maybe write a song or two.

What is one word you can use to describe yourself? No need to explain unless you feel it’s needed.

Genuine. Contemplative. I cheated and chose two.

My Nominations For the Sunshine Blogger Award:

Boo Diagnosis, Great Life

Joshua Idegbere

Uzma Ashraf

Mitali Rajawat

The Happiness Nerd

My Questions for My Nominees:

-What is your favorite season of the year, and why?

-They say that the two most important days of someone’s life are the day they are born and the day that they find out the reason they were born. Have you discovered why you were born? What, if anything, do you think your special purpose is in this life?

-Describe a favorite vacation. Why do you rank this vacation as among the best?

-What made you finally take the leap and begin blogging?

-What is your Myers-Briggs personality type? Do you feel like it i accurate? Why or why not?

-If you could have any super power, what would it be, and why?

-If you could change any one thing about yourself, what would it be?\

-Name your guilty pleasure. What is it about that one thing that you can’t get enough of?

-What is your favorite restaurant dish? And what is your favorite dish to prepare for others?

Planes on the Runway

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cancer Looks Good On Me

I Can see you hurting beneath your new red dress

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

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

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

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

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

You were glorious you, you were glorious

Frank Turner, “Glorious You”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Living While Alive

Love of mine, someday you will die

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

No blinding light or tunnels to gates of white

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

If heaven and hell decide that they both are satisfied

And illuminate the no’s on their vacancy signs

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

I will follow you into the dark

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

And the soles of your shoes are all worn down

The time for sleep is now

But it’s nothing to cry about

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You and me, have seen everything to see…

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

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

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

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

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

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

Cancerversary Reflections

I was driving, taking chances

Walking way too far out on

Some broken branches

Sometimes where you’re going

It’s hard to see

I always knew there was

Something missing

They said no one could ever get me

To sit and listen

I was always

Trying to leave

Babe it got away from me

Nothing will ever just

Come to you, it’s only

What you find around

And what you do

If you don’t hold it tight

It’ll leave..

El Vy, “No Time to Crank the Sun”

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

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

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

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

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

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

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

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

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

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

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

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

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

-To take risks

-To stop caring what everyone thinks of me

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

-To love fully and without restraint

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

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

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

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

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

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

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

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

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

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