The Ommaya

 

Dear Readers,

It saddens me to write this, but you may not hear from me again until next week.

Due to the size and location of the tumor in my spinal cord, my treatment plan has followed an unconventional path. What would have been treated with injections of chemotherapy into my lumbar spine, had to be addressed with cervical neck (c-spine) injections—which, as I am sure you can imagine, are painful and are accompanied by a whole host of possible complications. So far, I have been blessed with smooth, uncomplicated procedures, but continuing the c-spine injections is not a viable or long-term solution. The placement of an Ommaya Reservoir is.

I am no expert on the Ommaya Reservoir—and the best way for me to describe it to you (and to myself) is to say simply that in some ways, it resembles the port currently imbedded in my chest. It will give my care team safer access to my spinal cord fluid. It can be accessed in an outpatient environment. It will cut down on the number of procedures that I will have to endure. It has a lower risk of infection.

The catch? The Ommaya Reservoir is, for lack of better term, a “head port”. Tomorrow, March 9th, 2017, I will go to the Operating Room where a team of talented neurosurgeons will remove a small piece of bone from my skull. They will place the Ommaya Reservoir in my head and then they will cover it again with my skin. I will be in recovery for a bit, hopefully transferred back to my room on the cancer floor before the day’s conclusion.

The Reservoir, when I lose my hair, will be noticeable. It’ll be a small bump that I will wear for the rest of my life. The Reservoir, once implanted, is usually not removed. It’s permanent. It will become a part of me—for however long I am here on this earth.

Dear Readers, there is so much going through my mind right now! Do I want to undergo brain surgery? Do I want a permanent implant in my head? Am I afraid of complications? Am I terrified that this thing is going to cause changes in my mental function and personality? That it might impact my writing abilities? Absolutely. The fear of it lingers in every blood cell in my body. It darts between my nerves. It is the thought lurking under every other thought I currently have.

I am so f*&king scared.

But this is forward motion. This surgery is a much-needed step toward healing. This implant is the avenue by which I will receive the medications that I need to survive—and, if it means I have to take these chances, that my vanity has to suffer a bit, then I will do it. I will wear that bump for the rest of my life and I when I see it the mirror—even through rivers of tears—I will thank God for it.

I am changing, Dear Readers…in ways I could not have anticipated. This Ommaya Reservoir, as bittersweet as it is, it will be my off-centered unicorn horn. It will be a source of healing and power. I will envision it as gateway for grace and for gratitude to pass through. Eventually, it will usher in the rebirth of beauty. I was, according to my brother, a phoenix the last time this cancer struck. This time, I am the unicorn slowly finding my legs.

If you have a moment over the next few days, Dear Readers, please spare me a kind thought. Pray for a safe and effective surgery. Pray for my care team, for my family, for the incredible man that has been holding my hand since this journey began. Send us love. Send us strength.

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We walked outside (for the first time since 2/25/17)!!

Your love makes a difference, Dear Readers. It is felt. Please keep it coming.

 

With Love, Laura

 

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Unexpected Wins

 

I can’t lie to you, Dear Readers. I just can’t. I was absolutely terrified of what Monday, March 6th, 2017 might bring. I was internally trembling at the idea of having yet another cervical injection of chemotherapy into the back of my neck. I was afraid of waking up on the table (again) with a needle lodged in my spinal cord, moaning. I was dreading the resulting headache and pain. The risks associated with the procedure kept running through my mind. I was worried, too, that the day’s treatment regimen of additional shots to my legs would make me nauseous. In short, I wasn’t sure how I was going to survive Monday.

And, yet, not only did I survive it…but Monday was a win.

It was an unexpected win to be sure, but it was a win because I have been blessed with an outstanding care team—everyone from my oncology nurses and doctors on the floor, to the Interventional Radiologists performing the cervical injection, to the volunteers and support staff that take the time each day to repair my fraying seams.

In many ways, I feel as though I am a tapestry being ripped out, woven back together. These repairs they’re making to me—they mean something. I am not sure what I will look like at the end of this process, or what image might emerge among the woven threads, but occasionally I catch a glimpse of it.

I see something vibrant, as red as the dye a dear friend used to color my hair with. It’s the shade of scarlet that my LNA’s used in the poster that they made for my room.

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I feel a blanket of love, as bright as the rainbow of cards and well-wishes that flooded my bed yesterday afternoon.

I feel calm, in my mother’s warm embrace, in the way my partner holds my hand while we watch television at the end of the day.

Not every day will be like this past Monday. There will be more painful procedures to come. There will be nausea, fluctuations in weight, hair loss. There will be tears and heartache. Suffering is, after all, an inevitable part of this journey, of being human.

But there will also be wins. Small wins. Landslide wins. Wins that no matter what shape or size they arrive in, we have to seize with both hands—even if our finger strength is weak. Even if we need someone to help us hold on.

I hope, Dear Readers, that this week brings you some wins, too. I hope you feel loved and appreciated.  I hope you know that, each day, your messages and prayers are giving me the strength to face this challenge with both grace and gratitude.

 

With So Much Love, Laura

Blue Skies

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The sky, as seen from my hospital room window, is a beautiful blue today—the kind of blue that reminds me of summer evenings spent wading through dew-soaked grass in search of moths. It’s the same shade that occupies so much of my partner’s eyes. It’s the type of blue that whispers of happiness, of hope.

Today was better, Dear Readers. It consisted of a heaping helping of steroids, multiple doctors’ visits, and long-talks with social workers. My hours were spent making motivational art to hang in my room, talking with my mom, and laughing with a dear friend. I needed a day like today…and I am so, so grateful that I had it.

But, you’re seeing this blog tonight because I won’t be able to do my usual Monday post tomorrow. Tomorrow, I will be in Interventional Radiology, receiving yet another cervical injection of chemotherapy. Then, after that injection, I will receive still more chemotherapy—also injections, but to my legs.

Am I scared? Yes. I am frightened all the way to my cancer-filled marrow. Cervical injections are risky, painful—in fact, I would rank them as being more painful than even bone marrow biopsies—but this is a necessary evil. This evil is going to save me.

It amazes me, in my more detached moments, that pain can heal. That it can burn away disease. That out of these ashes, something whole and healthy and capable of thriving underneath brilliant, blue skies can emerge.

If you have a moment this Monday, Dear Readers, please spare a kind thought for me. Send blue skies. Send healing prayers. Send strength.

 

With Love, Laura

On Strength

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Dear Readers,

I had every intention to share something with you yesterday…but the day slipped away from me. The hinges on my door seemed to melt away, information and people spilling into my hospital room at a steady rate. There’s always so much to consider. So many decisions to make.

Yesterday was hard.

I thought it would be easy—the treatment protocol only called for steroids yesterday—but the medication makes my chest rumble with a grizzly bear’s impatience. It makes me feel like I am becoming rough, prickly, like the outside of a pineapple.  It’s the opposite of grace and gratitude, of everything that I hope to be in this life.

And maybe that’s the hardest part about cancer, Dear Readers—it’s not the drugs, or the fact that your body is trying to actively give up on you—it’s that cancer changes you. It steals whatever hope you had in youthful invincibility. It transforms your outer packaging, taking hair, fitness, any sense of self-worth and beauty you may have had. And, then, it tries to take your personality.

I could cry—whole rivers, whole lakes, maybe even an ocean. I walk this fine line between grace and hysteria, teetering over the edge from time to time. I sincerely wonder where I will find the strength to fight this, to outlive this disease this time.

The truth?

I realized that I can’t.

I can’t survive this—not without help.

I guess I can blame the chemo on making me a little sluggish on the epiphany-front, but that is the revelation that I had last night: that I can’t do this alone. I don’t have the strength, Dear Readers. My reserves were depleted the first time I faced this cancer…but it’s okay…because strength has more than one source. There is a vast reservoir of strength and love already out there, already in existence, already fully accessible. You can call it the Universe, The Divine, God—call it whatever feels good to you—but for me, it’s God, and He has the strength necessary to carry me through this storm.

You should know, Dear Readers, that you, too, have been spoon-feeding me strength.

Strength comes to me in your phone calls, messages, and pictures—always at just the right moment when I feel myself slipping. These daily doses of laughter, of hope, are as important as air, as steroids, as chemotherapy. Please keep them coming.

Because I’m not strong.

Maybe I never was.

But, it’s okay, because the strength that will see me through this isn’t coming from some personal, finite supply. It’s coming from God. And it’s coming from you.

With Love, Laura

Counting Blessings

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Dear Readers,

It’s been a rough few days. Yesterday I had an echocardiogram, my power port was placed in my chest, and I had a bone marrow biopsy. I’ve also been receiving pain medications and steroids around the clock. I am tired. I am hungry. I want to go home.

But I can’t. I have work to do here—work that I am determined to accomplish with grace, with gratitude, with a smile whenever possible.

*Amazing Book Spoiler Alert*

Recently, a wonderful woman shared The Riddle-Master of Hed trilogy with me. In those books, the main character Morgan trusts the High One’s Harpist, Deth, who eventually betrays him to an evil wizard not once, but twice. Morgan is subsequently tortured, but during that time he learns from his torturers, gathering power, gathering strength until he finally breaks free. At first, Morgan seeks to destroy the harpist that nearly destroyed him. His plans change, though, and, in the end, Morgan discovers that the harpist was, in fact, the High One—the ruler of the land, the giver of peace, security. The High One had this message to Morgan: that he “betrayed” Morgan, he let those terrible things happen to him so that he’d be prepared, so that he would be strong, so that he would be ready to inherit the purpose that the High One had for him. The High One loved Morgan and those bad things that happened—he would have prevented them if there had been any other way to assist Morgan in his journey.

Now, I know that this book is fiction. I know that I am not Morgan and, please, let there be no comparisons made between Morgan’s torturers and the wonderful care team administering all of the procedures designed to save my life. The members of my care team are gentle, bighearted guides that I trust with my life. They are intent on seeing me through this.

No, the only similarity between my story and Morgan’s is that pain happens for a reason. I have to believe that there is a greater purpose at work here. I have to believe that what I am going through, even if it never helps me, will help someone else.

Dear Readers, you’re right to say that cancer sucks. You’re right to shout “fuck cancer” as loud and as long as you want. You can cry. You can sob. You can do whatever it is that will help you deal with this news because, truthfully, I’ve been doing the same thing (except maybe the yelling – no need to get bed restrained lol). Amid my tears, though, I am determined to see the positive. I am determined to count the blessings inherent in each day.

For instance, as I write this, there is warm sunshine pouring through my hospital room window. Right now, my back isn’t hurting as badly as what it was. Right now, I am sitting upright and doing what I love to do—write. I have to count my blessings when I can because gratitude is the key to strength, to getting through this.

As is your love.

Please keep the positive vibes, prayers and words of encouragement coming my way. They are air and food to me. They are nourishment. They fortify me. YOU are saving me from the emotional anguish of this disease and, for that, I will be eternally grateful.

The only thing I can offer is my love and the hope that all of this is happening for a reason—for a greater good.

 

With Love, Laura

Relapse

 

Dear Readers,

It’s back.

The leukemia is back. It’s in my spinal cord, but localized in one spot. The news was revealed not by surgery as expected, but, instead, by a lumbar puncture (thankfully performed by Interventional Radiology) and a 3-hour long MRI. Tomorrow, I will have an echocardiogram, a power port implanted, a bone marrow biopsy, and my first dose of chemotherapy.

My doctors have never seen Acute Lymphoblastic Leukemia (ALL) manifest like this. They’re consulting bigger hospitals to discern just how to treat me. At the end of the day, though, the goal is to eradicate the leukemia cells and then have a bone marrow transplant.

I need prayers, Dear Readers.

I need love and light and healing vibes. I am relying on others—on you—to be my strength in those moments that I have none. This fight will be a long one. This fight is going to require guts and stubbornness. It’s a battle that I will need your help with. I will need your encouragement. Your words of kindness, of hope, of love.

I know some of the landmarks of this path, but in many ways, it is completely new journey to me. I would be lying if I said I wasn’t terrified. I would be lying if I said that I wasn’t hovering on the edge of being okay and complete hysteria.

BUT I plan on walking this path with grace.

I plan on cultivating gratitude and positive attitude as I go.

I fully intend to make the most of my time here, treating every day as the precious gift that it is. Even tomorrow, when I wake up in pain from the procedures, I will find something good to cling to. I will see the blessings in the day, even when my eyes are tear-filled.

Please, Dear Readers, keep my family and I in your prayers. Keep the good thoughts coming and I promise to do the same. This blog will continue to be a place of hope, of gratitude, of healing.

This will be the space that, every week (maybe not always on Mondays), where we can continue to meet.

 

With Love,

Laura

Every Day as Valentine’s Day

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I think, for the majority of my life, that I have intensely disliked Valentine’s Day. This dislike began early—in grade school—when the entire class would go around the room delivering Valentine’s Day cards and sweets to each other. When my classmates and I were still quite young, it was sweet. It made you feel warm and gooey inside like a chocolate chip cookie fresh out of the oven. As we grew older, however, the cooties were discovered among us. Valentine’s Day suddenly and irrevocably changed. You had to analyze every card in your Valentine’s Day mailbox for double meanings, hidden messages—because that’s how the cooties were spread—through the simple act of caring about someone.

Eventually, the cooties evolved into the “cool factor” and by Middle School, we had abandoned cute, cartoony Valentine’s Day cards. Your best friend might give you a bag full of candy, but that was the extent of our celebrations—unless you had a boyfriend or girlfriend to buy you a carnation from whichever one of the school clubs was selling them. In essence, the holiday went from being a gooey chocolate chip cookie to something burnt on the bottom of a baking sheet. It became the day that you dreaded, because if you weren’t cool, if you didn’t have many friends, you were going to be reminded of it from 7:30am when the school bus arrived at your doorstep to 4:30pm when it dropped you back off. It was the day you feared because, if your much-cooler-than-you crush found out that you liked him, it was over. You were going to be ridiculed, sometimes openly and sometimes with hushed giggles and sideways glances. It wasn’t safe to be a nerd, to be uncoordinated in gym class, to be different.

This is how I have spent most of my Valentine’s Days—in dread of my own cooties, acutely aware of my nonexistent cool factor, and worried that I might be unlovable.

Fast forward to the present year, and Valentine’s Day looks and feels considerably different. There are cards again. My best friend, who also happens to be my “crush”, gave me sweets—fresh fruit and chocolate fondue. I don’t have to worry about him finding out that I like him; he already knows. He also loves me for the very eccentricities that I used to fear so much.

Some of the holiday’s magic has been restored for me—but I know so many genuinely good-hearted people that absolutely abhor Valentine’s Day. Maybe it’s the gross commercialization of love. Maybe it’s the way the day creates a dichotomy—those with partners and those without. Or, maybe, it’s because as friends and family, we’re failing each other.

While dunking the last of our Valentine’s Day sugar cookies in my coffee (Note: you must leave them out at night so they get a bit stale. It gives them a little more of a crunch the next morning), I couldn’t help but wonder why we only go out of our way one day a year to show those we care about that we do, in fact, care about them.

Why aren’t we sending ‘thinking about you’ cards in the mail?

Why aren’t we having ‘just because’ bouquets randomly delivered to loved one’s homes or workplaces?

Why aren’t we showing up on a friends’ doorstep with a plate filled with sweet treats?

I am guilty of it, too, Dear Readers—becoming so busy, so absorbed with my own personal rat race that I forget to make time for those I care about. I forget to reply to messages. I don’t make time to visit. I miss birthdays and plays and poetry readings. Even after everything I have experienced, I forget sometimes that life is short. I forget that tomorrow is never guaranteed. But in those moments when I do remember, I question, what am I waiting for? Why am I so silent? Why am I not letting my friends and family know that I care?

I am proposing another experiment, Dear Readers. It goes like this:

Each week, I am going to reach out to someone I care about. Maybe I will send a card to them via snail mail. Maybe instead of hitting the “like” button on a social media post, I’ll take a few seconds and add a comment. Maybe I will schedule a coffee date or an ice cream run. Maybe telephone calls and road trips to Target are in order. Whatever the method or medium, I am going to be more present, more involved. I am going to make certain that the people in my life know just how grateful I am for them.

It’s taken me many years (and a lot of disappointment and self-doubt) to realize that Valentine’s Day is so much more than glittery hearts and chocolate roses. It can be a celebration of so much more than just romantic love. Valentine’s Day can be any day, Dear Readers, so why not every day?

John Wayne & the Catwalk

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I am one of those people that believes everything happens for a reason.

Sometimes, that reason is our own stupidity.

Other times, there’s a greater purpose at work.

It didn’t dawn on me, until this past week, that the pain in my legs and lower back might actually be serving a purpose. It might be here to teach me something. After all, many of the items that I listed in my Book of Hopes & Dreams for 2017 focused on becoming stronger; what better way to learn what strength is than to be temporarily without it?

One of the blessings—yes, I know, I just called this a blessing—of being in physical pain, is that I have been forced to take smaller steps. For those of you that know me outside of this blog, I usually keep a brisk pace. I tend to dart from Point A to Point B, without pausing to smell the proverbial roses. Now…with my back and legs in spasm…not so much. My steps are short, slow, and on bad days, there’s a bit of a limp.

This change in my stride has tried my patience. It’s tried my self-compassion. But it’s also opened my eyes to a world that I wasn’t seeing clearly.

As I mentioned in a previous post, my significant other and I were recently in Montreal, Quebec, Canada. We spent the morning celebrating my youngest godchild’s second birthday and then decided to while away the hours before our dinner reservations by exploring the city’s Old Port.

I had some difficulty appreciating my shorter step at the time (there was a cold, Canadian wind blowing), but later that evening I began to wonder, would I have seen as much as I did had I been able to walk at my normal pace?

Would I have noticed the photographer, in hat and gloves, trying to snap the perfect picture of one of the city’s many historic buildings?

Would I have noticed the suede mittens, embroidered with a bright, floral pattern, that another pedestrian was wearing?

Would we have made two pit stops—one at a café for some warm, caffeinated beverages and the other at an English-style pub for some glorious poutine—had I been able to walk for miles instead of just yards?

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Perhaps this post is nothing more than me, just trying to find the silver lining in a difficult situation (I’m really, really trying to be more positive, guys!). Perhaps, if I had been able to keep my usual pace, I would have seen all of these minute details and had these experiences anyways. But, I sincerely doubt it.

Had my legs been able to carry me further, we probably wouldn’t have lingered on the steps of Notre Dame, basking in the glow of winter decorations, for as long as we did.

We probably wouldn’t have stopped at a nearby souvenir shop for warmth.

We probably wouldn’t have paused on the sidewalk, admiring the horse and carriage plodding down the city’s cobblestone streets.

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Am I struggling with my current situation? Hell yeah. But, at the end of the day, I have this collection of small images—minute details—to process. They’ll probably find homes in blogposts and short stories. They’ll inevitably enrich my life in ways that I can’t predict. It’s already happening. It’s already changing me, prompting me to feel gratitude amidst the physical discomfort, forcing me to remember the words of the physical therapist that, after ICU in 2010, taught me how to walk again:

“Wide steps, Laura, like John Wayne. I’ll teach you how to do the catwalk later.”

So, for now, I will patiently be taking small, wide steps. I will saunter like John Wayne through this, observing the world around me and recording all of those minute, magnificent details that I would otherwise be oblivious to. And I will, eventually, get back to the catwalk—and when I do—I will be better, stronger, for having gone through this.

A Happy Birthday

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I spent my twenty-fourth birthday in an outpatient cancer clinic. I had a lumbar puncture that day—in which a chemotherapy agent was injected directly into my spinal cord. After that, I was led out to the infusion bay where I was to receive still more chemotherapy, this time as an infusion and with the use of an IV pump and the ash-split (picture two tubes with plastic clamps and nozzles) hanging from my chest.

I don’t remember being upset about spending my birthday that way; treatment had, at that point, been my regular routine—my life—for seven months. It simply made sense to be at the cancer clinic and if the receptionist, when checking me in, or the nurses, when verifying my identity before administering my chemo, wished me a “Happy Birthday”, then great. Wonderful.

You can imagine, Dear Readers, my surprise when, after settling into an infusion chair, additional members of my care team began to arrive in the bay. I didn’t have time to ponder their appearance because it seemed, suddenly, as though everyone—the medical assistants, the nurses, my oncologist, anyone that wasn’t in the middle of an appointment with another patient—had gathered around me, singing “Happy Birthday” in beautiful chorus. One of the research nurses rolled out a cake that she had baked and decorated with buttercream frosting. A helium balloon was tied to my chair.

If I didn’t cry in that moment, I have cried nearly every time since when recalling that day. The memory of that birthday—the first birthday I shouldn’t have had—has become a touchstone for me. In moments in which I feel alone, I remember my care team filling that infusion bay. On days when I question my right to be here, to be alive, I think of their bright smiles, their singing, their wishes for a good day, a healthy future. When I fall into the trap of dreading the aging process, of thinking that I haven’t accomplished enough for my age, I remember the flood of gratitude, the lifting of my heart, that that one balloon and cake perpetuated.

As I embark on my thirtieth year of life, it would be dishonest of me to say that I have no concerns, no sense of loss. The truth is, I do grieve the life that I thought I would have had by now (i.e. stable career, marriage, house, planning a first pregnancy). I do often wonder if there’s been some cosmic error and I’ve been mistaken as an adult when I’m really just a big kid with no idea what she’s doing. I feel all of those things, I think of all of those things. But I also know that each successive year is a gift.

We were not guaranteed our first birthday.

We were never promised that we would see our eighteenth birthday.

We were not assured that our thirtieth birthday would ever arrive.

Will remaining positive about aging be easy? Certainly not. Will there be moments when nostalgia strikes and blinds me to all of the wonderful things currently unfolding in my life? Sure. But, I refuse, absolutely refuse, to take this birthday for granted. I refuse to be ashamed of the laugh lines appearing on my face. I refuse to be angry toward the aching and often pain-riddled body that has carried me this far.

Until my next birthday arrives, this will be my best year.

This birthday—this big, beautiful milestone of a birthday that almost never happened—is a gift I fully intend to embrace.