This is How It Works

This is how it works
You’re young until you’re not
You love until you don’t
You try until you can’t
You laugh until you cry
You cry until you laugh
And everyone must breathe
Until their dying breath
No, this is how it works
You peer inside yourself
You take the things you like
And try to love the things you took
And then you take that love you made
And stick it into some
Someone else’s heart
Pumping someone else’s blood
And walking arm in arm
You hope it don’t get harmed
But even if it does
You’ll just do it all again
And on the radio
You hear November Rain
That solo’s awful long
But it’s a good refrain

Regina Spektor, “On the Radio”

You may have gathered that the last two weeks or so have had some darker days. Physically and psychologically, the post-surgery period is not one that I have been able to handle very well.

It begins in a hospital, and I hate hospitals. The apparatus, the tubes, the monitors, the frequent interruptions, the gowns, the inability to move freely or even fully accomplish hygiene and self-care. I am put in my place quickly. I am not a person, but a patient.

It manifests itself in the eyes of the 20-something resperatory technician sitting at the bottom of my bed. She stares smugly at me as her senior lectures me and I try helplessly to communicate my concerns with a breathing tube down my neck and nothing other than a pen and a piece of paper with no space left.

I will remember that smug look forever. This girl with no health issues and her entire future ahead of her, looking down on me as I attempt to advocate for my quality of life. I don’t look like an intelligent human to her; just some crazy older lady that needs to stop trying to communicate and let the better people in the white coats do what they want to do. She does not yet know how little she knows about the full spectrum and complexities of life that lie ahead of her.

After the hospital, I get to go home. The pain is still there, but the pain management system is not what it was. And then I realize that I get to deal with not just the pain. I also get to plunge headfirst into an estrogen-free existence. The hormones driving my body systems for 30 years are gone now. Just like that. No gradual transition. I get to jump on the fast-track to old-ladyhood lest I miss that phase on my way out the door.

Finally, two days after leaving the hospital, my stitching breaks open. A visit to an ER and back to the surgeon nets a solution that has your software engineer husband learning how to be a nurse.

How could we ever have imagined, at 42 and 41 that this would have been our lives?

All of this is no good for the brain. It starts wandering off to it’s favorite dark places. As I am being cared for by my husband, I begin to draw parallels to my future home hospice care. In my own room, but in a hospital bed. Will he have to bathe me? Change my clothes? The vast unfairness of it all begins to hit.

And what about the pain? If they can’t give me anything to meaningfully help with the hormonal changes or do more than simply dull the pain, how can I trust that they will be able to do so at the end? When I am possibly delerious and am unable to advocate for my own needs?

My last post had me in the thick of all of this. And rather than being fake, or avoiding writing, I decided to just let it all go. I know that it came across as whining, and I don’t care.

Part of my goal with this blog is to show the truth of the heart and brain’s experience with terminal cancer. My last post was part of that truth.

Here’s another truth. This week was a little better. My wound is not healed, but it’s slightly better. My pain hasn’t gone away, but it’s slightly duller. My hormone crash hasn’t gone away, but I’ve developed work arounds to make it slightly more bearable.

And this is how it works. Things are always changing. Right now they are changing- very slowly- in the direction of getting better. And someday, either a very long time or a very short time in the future they will do the opposite.

And this is how it works. It isn’t very fair. But you take the things that you have and you love and you use them to lift you out of the dark places and to stop you from dwelling in them. Experience and acknowledge the pain, but don’t grant them free reign to kick out or negate the good and joyful things that you do have.

And this is how it works. You take the things you get, and you try to spin them into the best life you can. You take the opportunity to grow and make your best effort. Not to be somebody else, but to be the best version of yourself that you can manage.

And this is how it works. Life will have other plans. It will give you challenges that you didn’t ask for. And it will be very hard to see the advantages you’ve had that you’ve always taken for granted. You take these challenges and you learn to either conquer them or manage to live with them. You just can’t let them run you over and flatten you. You can’t let them kill you without a fight.

And on the radio, you hear November Rain
That solo’s awful long, but it’s a good refrain

Mornings

Clean out your mouth this is not what it’s for
There’s still a bloodstain from the spill of the war
Pick up your sorrow this is not who we are
I won’t cry uncle having come so far

It’s alright, it’s alright
It’s just blood under the bridge
I’m too tired to fight
The affliction will be fixed
It’s alright, it’s alright
It’s just blood under the bridge
Put down the knife
And watch the blood under the bridge go by

So tie your ragged fuck ups in a neat little knot
And put it on the shelf behind the picture we bought
I’ve found a way to make the best of a flaw
And realize it’s not the end it’s an uncomfortable pause

Frightened Rabbit, “Blood Under the Bridge”

I have always been a morning person. I used to be one of those kids who was out of bed with the first alarm’s bell and into the shower. Nothing beats a morning shower. To wash all of the grime, dirt, and other tiny disasters that inevitably “muddied up” the day before. Mornings meant a restart. There was always a restart. It was either the next day, or the next school year, or the next move and cleansing of my identity. Another chance to be the new kid. There was always, always a fresh start of some kind. Until one day there wasn’t. One day I woke up and there was no escape.

I wrote before that I am becoming less bitter. About senior citizens complaining about ailments. About people with solvable problems who refuse to solve them; instead passively relying on the seeming foreverness of their future lives to come pull them out of their hole of self-created misery.

Oh yes, my friends, I am less bitter. But I am still far, far away from sweet.

I see so many people who are blatantly obese, ordering terrible things, living unhealthy lifestyles. And here I am- dying of fucking colon cancer. Because I didn’t eat enough vegetables as a kid? Because we picked up fast food too often as a family because it was convenient? I hear the bell and the chant, “SHAME. SHAME. SHAME.” I, and apparently tens of millions of other busy, middle aged working moms who aren’t dying of colon cancer right now deserve this.

There is no way to wash this off in the morning. It stays there now forever like a scarlet letter for the remainder of the time I have left.

I was always a morning person. And then I got cancer. And then I stopped working. Now I can’t seem to even get myself out of bed.

Surgery is one of those things that promises itself to you as a new start. If so, it is the most barbaric pathway to a new start I can think of. I am grateful for surgery, I WANT surgery because it relieves me from that ticking time clock that is the rapidly growing tumor in my abdomen. It relieves me, in the long term, from the consistent pain in my abdomen that has been growing for months.

But first, my friends, it must tear up and wreak havoc on everything helplessly surrounding the problem. If my torso is a metro map keeping my system healthy and running, I can tell you that right now it is full of warning signs in primary colors.

The signs warn of gridlock and construction everywhere. And the worst part is that the chief engineer isn’t even 100% sure yet that he actually gutted all of the bad stuff. Meanwhile, the hormone highway just put up a “closed forever” sign, leaving several stranded, confused, and angry travelers shouting and firing off in all directions.

For housekeeping purposes, here is my latest update: I am now 10 days post-surgery. They believe that they took out all of the mass, along with my right ovary. They pulled that all out and say that “it’s possible” that my left ovary came out with it, but probably not. They didn’t pursue further because my blood pressure kept dropping to the point that they had to give me two units of blood during surgery, and three additional units over the next 3 days post-surgery. So they sewed me up and stopped. I got to wake up with a breathing and NG tube and a set of wrist restraints to prevent me from pulling them out. If a person gaining consciousness’s first instinct is to yank them out, I will let your imagination decide for yourself what these felt like.

I will throw this experience in on growing pile in the corner of moments that I am collecting with this disease that literally have made me feel sub-human. I was not only not able to speak, but told that my attempts to write were interfering with a line in my right arm and told to stop. I did get at least the breathing tube out later that morning and then after 5-6 days in the hospital I made it home. A part of my incision wound broke open the day after dismissal and now requires my husband to pack and bandage it daily with hope that it will heal. Because of course it did.

I used to love mornings. I don’t love mornings any more. Sometime in the evening before, I will have sweated through my clothing and woken up wet. Sometime in the evening, my sheets got wet. Sometime in the evening I curled up into a cold, defensive sleep position that put all of the pressure on my hip and now my hip hurts. Sometime in the evening, my on-again, off again peripheral nueropothy woke up after my cold, clammy, hand emerges from being wrapped up in a wet, sweaty hoody all night. Or maybe the open wound that my husband is still packing after surgery came open and there is blood all over my underwear? Or maybe the supports for my wound shifted accidentally and put pressure on my ostomy bag causing that to break open as well?

I used to love mornings. I don’t love mornings any more. When I wake up in the morning now, my first thought is usually about pain or discomfort of some sort. My second thoughts are usually about cancer, and all that it, and multiple operations, have wrecked upon my body to keep it alive.

So maybe I don’t love mornings. Mornings are now the mud puddle that I must slosh through before deciding whether to step up and re-enter life. Even if it doesn’t get to be the perfect clean that it used to be. Even if I don’t get there until the afternoon. Something different has emerged. It is the haggard sort of clean that finally comes to a warrior after battle, who has somehow made it through and now boldly decides to enter into another day.

I will never again be as clean as I used to, but I am here. I will never be as young or free of pain, but things still get better, until of course again some day they won’t. The wounds from surgery will heal and the associqted pains from surgery will go down.

They will scan my body and then tell me again (hopefully) that I am better off now than before I went under. I will start to feel better and get back to chemo and hope, hope, hope that it is still working for me because I’m not ready to fade away and die just yet. I’m not yet ready to stop getting out of bed. Even if I feel older now than I think that I ever have before.

Four Emotions

And games that never amount
To more than they’re meant
Will play themselves out
Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice, you have a choice
You’ll make it now
Falling slowly, eyes that know me
And I can’t go back
And moods that take me and erase me
And I’m painted black
Well, you have suffered enough
And warred with yourself
It’s time that you won
Glen Hansard and Marketa Irglova, “Falling Slowly”

Tomorrow I have another surgery. It will be my fourth attempt and/or complete major operation since my diagnosis fourteen months ago. This of course is not counting four additional minor surgeries to place my port, insert my nephrostomy tube, and to place and replace my ureter stent. I guess you could say that preparing for surgery is getting pretty routine for me by now.

Before my first surgery to remove my primary tumor, I was shell-shocked, but trusting. I blinked in wonderment as it was explained to me that I would wake up with a colostomy bag. There was hope sprinkled in that it probably wouldn’t be permanent. I could have it reversed in maybe three months, or six months, or a year. It’s hard to describe my state of mind during that time, but there was a fair degree of denial. I had always overcome medical issues before. I survived four broken vertebrae in my back as a pre-teen. I survived a seizure disorder as an older teen/young adult. Nothing bad had ever happened to me that the doctors couldn’t magically fix. I did not yet know I was Stage 4, and my surgeon was sprinkling hope dust all over me, deliberately downplaying information that he had that signaled that my cancer was far more serious than he led me to believe. It hadn’t yet processed with me yet how my life would be forever changed.

No thoughts entered my mind that something could go wrong.

Before my second surgery-not-surgery I was also trusting. I had selected the best team of specialists, and they would take care of me. Little did I know then that I would wake up only a couple of hours later to what would become one of the worst days of my life (described in my earlier blog entry titled, “Things Broken.”)

By the time my third surgery came around, I had cycled through all of the emotions. However, I was riding high on a major pep talk that I had given myself on why I should once again let go and have trust. What I woke to this time was a mixed bag of success and failure that would have to wait for months to fully play out. I was better off in many ways because of the surgery, but worse off in other ways. And those ways that I was worse off could have been easily taken care of in surgery. But they weren’t.

So where do I find myself today, on the eve of yet another major surgery? And yet another crucial turning point for my prognosis and quality of life?

I have four emotions simultaneously: I am grateful, and I am hopeful; I am apprehensive and I am scared.

I am grateful for the chance to take this 8-inch diameter blob of cancer out of my abdomen. I am ready to free my other organs from this invader that is pressing on them, trying to crush and damage them. This tumor has been growing steadily and menacingly for seven months. 7 cm, 11 cm, 14.5 cm, 16.7 cm! At times, I have pictured the tumor laughing at me, and mocking every weapon that I have fruitlessly used against it.

Tomorrow I am giving it it’s eviction notice. It cannot have power over me any longer.

I am taking it out before it takes me out, and I am so grateful for all of the extra time that will give me.

I am hopeful that things that will go right. I am hopeful that after this surgery that my abdominal pain will finally go away. That I will be able to do light exercise again. That I will have my energy back and be able to live like I did before my HIPEC surgery last April. I am hopeful that I will be able to live like this for several more months to possibly years.

But hope is a dangerous thing, and I have been conditioned to be wary of it. To question it. To beat it away before it jinxes me and sets me up for another fall.

So I am apprehensive. I am apprehensive about what removing my ovaries and possibly my uterus will do to my body. And how it might play havoc with my emotions.

At 41, chemo has already chased away my periods. Now I am looking at a surgery that will hurtle me head-first into early menopause.

If death has to be accelerated for me, by all means, let’s not skip menopause!! Chemo hasn’t done enough to dry me up and age me!! This surgery should finish the job.

How far away my pre-cancer life now seems to me! A little over a year ago, I was a full time working Mom. Today I am retired and about to go through menopause.

While cancer and associated treatment may burrow through and change my outward appearance, it cannot change what’s beautiful within. The gutting of my female organs doesn’t make me less of a woman. It just makes me a bad-ass woman. Take it all out. I’ll trade it for more life. I’ll trade it for more life with my loves.

Which brings me to the very last emotion that I am feeling today. I am scared. I have the fear that comes with knowledge and experience. Unlike before my first surgery I now know that things can go wrong. I know that they might go wrong tomorrow.

One of the two surgeons operating on me tomorrow is there solely to take care of any scar tissue left over from my HIPEC (heated chemo washout) in April. How bad it is is the great unknown. It’s not uncommon for there to be some organ fusion after HIPEC. If it’s bad enough there could be complications, and/or surgical separation and clean up. These could impact my recovery, or (worst case) cause quality of life issues post-surgery.

So I go in anyway. I move forward despite my fear. Because I don’t have a choice. Because I want my best chance.

Tonight, I will begin my usual routine. I will shower with surgical soap before bed. And tomorrow I will wake to the standard protocol of fasting, and shower with surgical soap again,. sterilizing my skin for the procedure to come. My husband will drive me to the hospital, where I will exchange my clothing for a hospital gown and wrist band. I will say my birthdate about 20 times. I will have a needle attached to an IV line stuck into the chemo port in my chest, and probably a needle or two in other locations for good measure.

I will say goodbye to my husband before being rolled into an ER and subsequently knocked out. I will lay on a table, unconsciously, as medical personnel shave me, remove my ileostomy bag and, finally, slice into me existing scar lines- which already run across my abdomen like a treasure map.

My husband will wait for hours for updates, but for me the time will pass in a blink.

I will awake to the news of how everything went this time.

I am grateful, and hopeful. I am apprehensive and scared.

A Lighthouse on the Horizon

I spend too much time
Seeking shelter
World without end
Couldn’t hold her
There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for
Anywhere the wind blows
Toad the Wet Sprocket, “Windmills”

Anything can be normalized. If you are exposed to it every day, that is. A doctor can deny a patient a life-saving treatment or surgery, and then go to lunch with his wife and forget about it. An ICU nurse can tell a patient in agony to “quiet down” because she has other patients that she deems as worse off. And a person living with a terminal disease can live life functionally, little by little, even though their entire foundation and futures have been shaken and permanently cracked.

The psychology of living life while preparing for death is anything but normal. And yet, we must do it. I’ve spoken in prior blog posts about how the existential slap goes through phases. There is a point, after the initial crisis has had a chance to germinate and set in for a while, where a new psychological set point starts to kick in. This stays until the patients condition begins to worsen again, and then the emotions arise as they come to terms with the reality of their worsening health, and of the increasing proximity of their final end.

A year into my diagnosis, I believe that I’ve finally hit that set point. Gone are the days that I cry on a daily basis. I now cry maybe once a week, even though it makes my eyes burn due to the after effects of chemo. I think about it the most when I feel pain. However, thanks to modern medicine and my new long-acting pain medication, even that has gotten better. Even if I know that my condition hasn’t. And that the tumor causing the pain is likely still growing.

I’ve grown accustomed to chemical infusions that make me nauseas and steroids that steal my ability to sleep. I’ve grown accustomed to the fact that I will probably be on some form of chemo for the rest of my life until it all fails and I die. I’ve grown accustomed to hospital gowns and socks. I’ve grown accustomed to looking out for when my oncologist might miss something so that I can make a mental note to ask or follow up later. I’m even becoming accustomed to being less active, since any activity irritates my stent and makes my urine indistinguishable from cranberry juice. These things are all now part of a new normal.

This “normal” feeling has been partially bolstered by some encouraging news. This tumor in my abdomen that scares the hell out of me is finally going to be removed. It’s even on the calendar and scheduled. Both of my ovaries, and possibly my uterus have been given an eviction notice. Oh yeah, I forgot to mention- major surgeries that remove organs? Those have also become part of my new normal. The local surgeons I consulted have decided not to address the tumors in my liver as part of this surgery. But they are doing the surgery, and quickly. There is something to be said about speed, and I want this fucking thing out of me as quickly as possible. Before it causes a problem that can’t be solved without compromising my quality of life. Or even worse- a problem that can’t be solved at all.

I’m getting my second plane on the runway. And I am satisfied with that, as long as it is fast and can get me back to chemo as soon as possible.

Being scared out of my mind makes me angrier, and sharper. Lately I’ve been neither angry nor sharp. I mentioned to my oncologist that I think that I’m getting chemo brain. He brought up the fact that my pain medications may be the cause. That hadn’t even occurred to me for some reason. It should have.

Being angry and sharp makes me want to write more as public therapy. I haven’t felt the need to write as much lately, so I’ve started to attend local writers’ workshops to try to coax the writer out of it’s slumber and get me back to doing this. To help me remember why I started writing again and to force myself to not only stick with it, but to play with new boundaries and genres.

I’ve settled in to the disease. I’ve wrapped cotton foam around it. I’ve distracted myself with a video game- something that I banned in busier days, because I’ve never been at fitting them into a reasonable spot in my schedule. It’s either something I want to do a lot or not at all. Miraculously, I still have my hair. I’ve put back on most of the weight I lost. Vacations to Quebec and Kauai have rendered me helpless to rich foods and desserts. Having fun and relaxing have made me want to eat and drink good things.

So which is best? Angry and sharp or content and muted? I’m guessing it’s a balance of the two. The challenge comes with trying to find the right one.

I got notified of the final thumbs up on my surgery over the phone. There are a few questions that I still have lingering, and I will not meet with these surgeons again prior to surgery. Should I push further? Maybe. But my eyes are also glazing over a bit and focusing on two primary factors.

It’s kind of sad- yet oddly so on point- to use the television show Survivor to best describe those two factors. Have you been watching the current season? Sandra is back as a mentor to current players. During her season, she had a mantra, “as long as it ain’t me.” She would make any choice, any decision as long as she wasn’t going home. She had short-term goals (making it past the next vote) and long term goals (making it to the end), and continuously adjusted them as the situation changed.

My life has become Survivor- the Metastatic Cancer edition. I’ve also got my options mapped out, but am continuously adjusting them as the situation (or game) changes on me. I’ve got to keep manoeuvring to not only prevent the next bad news event from taking me out, but also to stay positioned to play the longer game. The first thing that this next surgery (tribal council vote) will achieve is blindside the current largest threat before it gets stronger and votes me out of the game. That threat, of course, is the tumor in my abdomen that is growing rapidly and actively encroaching on other organs.

Now I must consider the longer game strategy. Even if I can’t take out all of the rival alliance with this vote, I have reduced the number of places that my cancer resides. This puts me in a better position to advocate for future surgeries (tribal councils) where I can vote the cancer out of the remaining portions of my body that it resides. This all assumes, of course that the cancer doesn’t form a larger alliance behind my back, spreading further and blindsiding me first. The odds of winning the game of metastatic cancer are very slim. It’s pretty unlikely that I am going to win this thing, but I would like to make it as far into the game as I can.

I see another lighthouse, and it is beautiful. If it is real, then it has to be attached to land of some kind! And if it is land, perhaps I can begin chart out from here my course of longevity. Do I dare say my other secret wish out loud? That somehow despite all of the reality checks given to me by doctors that I could steadily advocate for myself- surgery by surgery- towards some sort of cure?

Shit. I shouldn’t have written that. I have angered karma again and I’m sure to regret that later. I’m like Charlie Brown, staring at that lighthouse with hope when I should know by now that it’s just another football, another mirage. I should know that what I am hoping for is going to be pulled out from under me or appear farther away the second that I get close to it. But it’s human nature to want to pull the wool over our own eyes- to grasp on to hope.

So I reach out, despite knowing that this next existential slap is going to sting me especially hard.

In the meantime? I have found a way to be more or less happy with this new normal.

It’s finally starting to sting a bit less when I hear others talk about a future life that I have been deleted from. I have conjured in my imagination a picture of my husband as senior citizen and it seems so real! I can see the hearing aid in his ear and hear his voice yelling at the kids to get off of his lawn. I realize that by the time that occurs I will have already been gone for decades. But those realities, surreal as they are- are now slowly beginning to normalize in my brain as well.

The consolation prize of this tragic new normal is that I am now more grateful than I ever before could have imagined for the people I have in my life now. I am also more grateful than ever for the gift of time itself, and for everything that I am still able to experience, from the good morning snuggles with my kids to watching a school of dolphins frolicking and racing our catamaran in Kauai.

And I am grateful to see another lighthouse. Regardless of what uncertain future it was sent here to harbinger.

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 dulls, but lingers underneath, even as I stand out on my hotel balcony looking out at palm trees, swans, and the beautiful ebb and flow of the ocean. 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 pure 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. When my husband has to take a day off of work for each 3.5 hour journey there. Just another reminder that what qualifies for me as a crisis doesn’t register as even a priority in the eyes 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. With vacation allowing for rare second week away from chemo, I let a few drinks flow and let the tears fall out with my words. Soggy words of sadness over the reality of having to lose everyone, and 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 my stoma was defecating all over my underwear, shorts and t-shirt through my ostomy. I’ve had this happen before, but never in such close quarters. And never when I can’t excuse myself to take care of it.

The most surprising part is that 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 enjoy 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 precious 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 it’s 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.

It’s the perfect scenario to describe how much my perspective on life in general has changed since my diagnosis with this terminal disease.

From great heights- like the ants on the highway- big problems become much smaller. 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. Fortunately, the free flow of air through the helicopter cockpit eliminated all 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 an (almost) perfect day in paradise.

As we boarded the plane and traveled back from vacation, I regretted leaving behind the fantasy and the beauty of it all. But I also 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. Or who were not given love unconditionally. These people then grow up to be adults who continually act and react to the world based upon those holes to 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?