Reminders

I was given a large binder of reading material the first time I went to Boston for a bone marrow transplant consultation. I procrastinated when it came to reading through it because it was just too much—it was overwhelming, frightening. As the date of the transplant has approached, I have started looking through the binder, specifically at the list of items I can and can’t bring with me to the hospital.

The list is quite extensive. There are so many rules, so many things I can’t bring (including a hairbrush). Patients are, though, encouraged to bring “Images/items that help remind you of your goal of getting well.”

The space in my suitcase is limited, so instead of packing multiple reminders, I filled a USB drive with pictures that I hold near and dear. As long as neither the USB drive or my laptop is fried in the cleaning process (which will take place as soon as I arrive), I can look at my reasons for undergoing this bone marrow transplant whenever I need to. I will smile. I will cry tears of joy and gratitude for all of these good things and people that are in my life—despite cancer.

Not shown above, are the family pictures I have saved on the USB drive. Pictures of my family, of Seth’s family.

Thank you—to all of you—for the positive thoughts and continued prayer. It means the world to us. Please keep the love and light coming.

With Love,
Laura

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The Good That Each Moment Holds

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Dear Readers,

I am writing this blogpost from the comfort of our own apartment. Sunlight is streaming through the glass, front door and the washing machine is humming in the background. I am surrounded by familiar landmarks—photographs, giant coffee mugs, and piles and piles of both read and unread books.

This feels normal.

This feels good.

If I weren’t bundled up in a sweater and layer of blankets, if I wasn’t fighting nausea, if I wasn’t struggling for control of my left leg, I could almost forget that I have cancer. I could almost forget that I have to return to the outpatient cancer clinic tomorrow for still more chemotherapy.

Almost.

The gravity of the situation sneaks up on me, Dear Readers. It surfaces when I least expect it to, knocking the air out of my lungs. It makes me cry—almost daily—and always in the evenings when the punch of the steroids begins to fade and the exhaustion creeps in. It tries to steal the joy still inherent in my days…but I won’t let it win.

Not today.

Not tomorrow.

Not ever.

As difficult as my current circumstances are, there is still so much to be thankful for. There are blessings hidden in each hour. Every new day that I wake up to is an opportunity for grace and gratitude. AND that is what I will focus on—not on the future, not on whether or not this treatment plan is going to work in the long-term—but on the good that each moment holds.

Will it be easy? No. Absolutely not. I am going to have emotional meltdowns and days that I can’t leave my bed. Tears will be shed. Sobs will be stifled by pillows. It is in these moments that I will remind myself that life still has beauty and that no matter how difficult this journey is, it is worth it.

Tomorrow, I return to the Hematology/Oncology Outpatient Clinic for two different chemotherapies; one will be administered through my Ommaya Reservoir (my off-centered unicorn horn) while the other will be infused through my chest port. On Tuesday, I will take my last mega dose of steroids (yay!). On Thursday, providing my white blood cell count is high enough, I will receive another dose of chemotherapy through the Ommaya as well as undergo a bone marrow biopsy. The results of that biopsy will shape next week’s treatment plan.

On April 3rd, my significant other and I will travel to Boston for the initial bone marrow transplant and tissue-typing consult.

I will need your continued support, Dear Readers, through all of this. I will need your prayers. I will need all the light and love that you can spare. I will do my best to keep you up-to-date, but please know that if you don’t hear from me, I am undoubtedly thinking about you and continuing to count YOU as a blessing.

With Love, Laura

Days Like Today

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The ride from the hospital to the American Cancer Society’s Hope Lodge is a short one…but I cried big, chemo-y, alligator tears the entire way there. I shed still more happy tears yesterday, while simply sitting in the truck and listening to the radio. I’ll probably keep on crying—because my heart is that full of gratitude.

There was a part of me, Dear Readers, that believed that I was never going to see the outside world again. I was terrified that hospital pumps and the ding of call bells was all that the future would hold for me.

Thank God I was wrong.

Thank God for the excellent team that cared for me while I was inpatient on Shep 4 (the Hematology/Oncology Cancer Floor).

Thank God for YOU, Dear Readers, and all of the prayers and well-wishes that you have shared with me. You truly have been spoon-feeding the strength that I need for this fight. You are carrying us through this storm, one step, one comment, one prayer at a time. NONE of this would be possible without your words of encouragement, without your continued love.

I wish that there were other words that I could share with you—words that could somehow capture the essence of what I am feeling. “Thank you” does not suffice. “This means the world to us” is not enough. In truth, my entire being is overwhelmed with gratitude. Even as the chemotherapy knocks my blood counts down, my veins are full, singing with excitement. My heart is lighter than it has been in weeks. I am so incredibly blessed.

Waking up in the same room as my significant other? A blessing.

Having breakfast with him, in the Hope Lodge’s dining room? A blessing.

Watching him fall asleep in a recliner while I write this? A blessing.

Hope Lodge is the house that saw so much of my first treatment—seven, intense months of it to be exact—and while I never thought that I would be back here, head shaved, port in my chest, doing this again, I am grateful to be here. I feel as though I could press a hand against the wood molding around our door, and all of the peace and healing this home has to offer would somehow sink into me, somehow bolster my resolve to keep moving forward. I look out the window and I see a hill of snow and a set of steps that, even with my left leg brace on, I conquered just this morning. I look at the artwork adorning the walls, and I see more than color and shapes—I see life.

I see life, Dear Readers.

I am not sure that I will ever feel strong enough for this fight, but days like today—I feel gratitude. I feel God’s grace. I feel hope, sending out new roots.

Please continue to send love and light. Although I will be in the capable hands of my outpatient Hematology/Oncology team, tomorrow will bring with it another round of chemotherapy. Pray that it works. Pray that we send this cancer packing once and for all.

 

With Love, Laura

 

Chomping on the Bit

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Dear Readers,

I have been an inpatient on the cancer floor for over 3 weeks now.

I’m not sure where the time has gone…or, really, how I’ve spent it. I’m at a loss for what I’ve been doing or how I’ve been surviving this. Time seems to move both slowly and quickly here, measured not so much by the date on the calendar but by blood counts and chemotherapy drugs. It’s measured in new hardware—a chest power port and the Ommaya Reservoir in my head—and the fact that I can now strap on my own leg brace without assistance. It’s marked by meals that are starting to taste like metal. It’s spent coloring and reading three pages at a time (because the Ommaya still gives me bouts of motion sickness).

I look out the window a lot.

There’s an office across the courtyard and at this time of day, when the security lights are on but before the sun rises, I can see inside of it. There’s artwork on the wall and a vase of giant red flowers. I think I can make out the corner of a well-stocked bookshelf. It’s the sort of place that’s perfect for writing, for quiet contemplation.

Contemplation is something that I have been avoiding recently. True, being ill might be the perfect time to take stock of one’s life, reassess goals, make bright and happy plans for the future—but those hopeful thoughts have shadows.

What if the treatment stops working?

What if I never get to go home?

What if this is what the rest of my life looks like—tubes hanging out of my chest, 6 am blood draws, massive doses of steroids?

I want to live. I want to see what life is like on the other side of this…but, if I am being honest, I still don’t have the strength to endure this treatment. There are days when I think that I might have the resolve to do it—that there’s some steel left in my soul—but then there are mornings like this morning, and I know I am drained. There’s barely enough fight left in me to take a sponge bath or choke down a carton of milk. I know I still need you, Dear Readers, spoon-feeding me encouragement and strength. Prayers work. Good vibes mean something here; they permeate the hospital walls, they chase gloomy thoughts to the far corners of the room, they make the minutes pass a bit more gently. And I wouldn’t be here without them.

Without you, I wouldn’t be making progress.

The week ahead may look different for me. There’s chemo involved, of course—and heaping helpings of steroids still—but there is a small chance, Dear Readers, that the next step in the process has arrived. I may be discharged from the hospital as early as this afternoon (if treatment goes smoothly and if we can be exceptionally persuasive).

Am I excited? I am so very excited at this small measure of freedom! I will be free to leave the confines of the hospital, returning to the outpatient cancer clinic at least three times a week for both the heavy-hitting chemotherapies and injections into my Ommaya Reservoir (because, although the tumor is shrinking, it’s still there, circulating cancer blasts in my central nervous system). I will reside at the wonderful Hope Lodge—a move that will allow me to share the same room with my significant other, to have some comfort even though I am far, far away from our apartment, from Wallace the Wonderful, and from Alderaan.

Please pray that this change happens, Dear Readers. I will miss my inpatient care team, but in many ways, since this possibility was first mentioned, I feel as though I have become more and more horse-like, chomping on my bit. It’s as if the windows that don’t open now have drafts and I can smell the promise of spring. I need more of it. Please continue to send well-wishes. Please keep us in your thoughts.

You are carrying us through this process—one step at a time.

 

With Love, Laura

The hours after…

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In the hours after my Ommaya Reservoir was surgically placed, I sobbed. A wave of grief and tears rushed at me, clinging to me as fiercely as the blood and the betadine that coated my scalp. I thought I had made peace with the fact that I would be a unicorn with an off-centered horn. I thought I was emotionally and mentally ready for this step.

It turns out that “ready” doesn’t exist.

“Ready” is the lie we tell ourselves in order to take the next, necessary step.

In the days after my Ommaya Reservoir was placed, I dry heaved. I slept a lot. I discovered that staring at screens for even short periods of time results in something akin to motion sickness. Writing this blogpost has been a form of medieval torture. Even reading is a hazardous pastime now. I have been told that these side-effects, so similar to those of having a concussion, should diminish with time. My brain and the Ommaya will eventually find some easy equilibrium. This—the pain, the slight swelling, the difficulty doing those things that usually nourish my soul—all of it is temporary.

And that, Dear Readers, is the mantra that carried me through the weekend: that this is temporary.

This discomfort is temporary.

This treatment, although a thousand times more arduous than my first cancer treatment, is temporary.

This cancer is temporary.

What do I mean by all that? Well, the first thing you should know is that at this hospital, Hematology/Oncology inpatients are visited daily by a team of attending physicians, fellows, medical students, and nurses. The faces comprising the team usually cycle out on a weekly basis. Team members also change every weekend (because even superheroes need days off). It was during this last weekend rotation, that the Hematologist/Oncologist that cared for me likened my cancer relapse to a temporary and oh-so-beautifully ordinary situation: that of a clogged sink.

At some unknown moment during the past few months, my bone marrow began to flow with cancer blasts, just as an open spigot would. Normally, leaving a faucet running might not be a problem, but sinks sometimes plug up. Sometimes, they stop draining altogether. My spinal cord, Dear Readers, stopped draining. It plugged up with a tumor. Water sloshed over the sink’s basin, spilling onto the floor in the form of pain, lost flexibility, impaired mobility.

Like any clogged sink, though, there are things that we can do to resolve the situation.

There are towels down on the floor, now, sopping up the spillage. Each injection of chemotherapy into my Ommaya Reservoir will clear still more of the tumor from my spinal cord, allowing the sink to drain down. Each dose of systemic chemotherapy administered through the power port in my chest will clean the cancer out of my bone marrow, shutting off the spigot’s flow.

Eventually the sink will drain.

Eventually it will dry out.

Eventually it will be ready for a bone marrow transplant.

So, yes, in the hours after my Ommaya Reservoir was placed, I sobbed. In the days after the surgery, I have struggled with nausea, fatigue and pain. But, eventually—in the weeks, in the months ahead—while shuffling one, unsteady foot in front of the other, I will regain some semblance of equilibrium. I will remind myself that “temporary” is, in actuality, a beautiful word. And, when I am too tired or in too much pain, I will simply close my eyes and conjure light. I will let it radiate within me, and out of me, flowing from the crown of my head like a unicorn’s silver and gold mane. I will let the love and strength you have gifted me, Dear Readers, gather in my newborn legs. I am, after all, a creature being remade.

I ask, once again, for you to send kind thoughts this upcoming week. Send light. Send love. Send strength.

This treatment plan is ugly, Dear Readers, and the days ahead of me are not easy ones. Now that the Ommaya Reservoir has been placed, the treatment regimen will intensify. I will be receiving harsher chemotherapies, nearly every day. This cancer will be shown no mercy…which means neither will I.

For now. Temporarily.

 

With Love, Laura

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

 

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