A Return to Grace and Gratitude

Cuddles with Squishy

I’ve cried a lot over these last few weeks…mostly in the mornings or when hooked up to an infusion pump. I could blame the deluge of emotion on so of my current life circumstances:

  • I am physically exhausted
  • The chemotherapy that I’ve received  over the past two weeks has been anything but easy to tolerate
  • I am now neutropenic (no immune system whatsoever – which means extra hand-washing and wearing masks for the next week or so until my white blood cell count starts to recover. It means no visitors and being extra vigilant about odd physical symptoms)
  • I feel as though I have lost something of myself – I have difficulty writing; the words do not want to come to me and when they do, they are often incorrect or misspelled. The only reason, Dear Readers, that these posts make any sense is because I have both Seth and my mother proofread them before they go live. My hands tremble just enough from neuropathy (nerve damage from the chemotherapy), that taking photographs has become frustrating.

When I started this journey, I wanted to face it with both grace and gratitude. I realized, while hiding in the bathroom at the cancer center this past Wednesday prior to receiving two units of (AMAZING and REFRESHING) blood, that I haven’t done a very good job with that as of late. I haven’t approached this challenge with grace nor have I been all that grateful for each day. I suppose those two qualities are hard to cultivate when you’re doped up on medications and anemic, but let’s put the excuses aside for just a moment:

  • Every day that I have treatment, I have the opportunity to overhear and witness other survivors’ perspectives. I get to learn a little bit about what still lights their lives up, why they’re pushing forward through their own health challenges.
  • Maybe we’re all just muddling through, forcing smiles when we have to, but this past week has also made me acutely aware that like a New Year’s Resolution, a resolution to face cancer with grace and gratitude will occasionally require mental and emotional recommitment. It will require a renewal of sorts. Grace and gratitude do not just magically appear—they have to be worked toward, and, in many ways, earned.

I am crying (again) as I write this, Dear Readers. They’re not tears of self-pity or fear, but rather the tears of a breakthrough. Will it be easy to find joy on the days when all I want to do is cuddle with Squishy (yes, I am a 30-year-old woman with a stuffed unicorn toy) on the couch? Maybe…but what if cuddling is meant to be that day’s joy? Will I continue to grow frustrated with writing and photography? Probably. But you know what? Practice makes perfect and I do know, from my first rodeo with cancer, that much of this neuropathy will go away. The photographs won’t be blurry forever. The words will come back to me when the chemo regimen slows down.

Grace and gratitude—that’s how I wanted to fight this. And, with occasional reminders and restarts, it is how I will fight this.

Please continue to send light, love and healing thoughts, Dear Readers. Treatment marches on this coming week:

  • On Monday – I will receive an infusion of chemotherapy through my chest port, more chemotherapy through my Ommaya Reservoir, as well as two shots of Erwinnia (another chemotherapy) to my legs
  • On Wednesday – I will receive more Erwinnia
  • On Thursday – I will receive chemotherapy through my Ommaya Reservoir
  • On Friday – I will receive even more Erwinnia.

It’s going to be a busy week, Dear Readers, but it’s one week closer to our goal. It’s another opportunity to practice grace and gratitude.

 

 

 

With Love, Laura

 

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Course II

Strength Key Chain

It’s been a little while since I’ve written anything. I could blame it on the fevers that have plagued me. I could attribute my silence to the fact that I am completely and utterly overwhelmed by the treatment plan looming ahead of me.

When I was diagnosed, I erroneously believed that treatment would consist of Course I (approximately 30 days of chemotherapy) followed by a bone marrow transplant. I am sure you can imagine, then, how overwhelmed I was to learn that not only would I have to endure Course I, I would also have to somehow survive 54+ days of Course II.

Fifty-four days of chemotherapy.

At the end of those fifty-four days, providing I continue to respond to the treatment, I will also have to undergo a course of radiation. The radiation is designed to make sure that the tumor is completely eradicated before moving forward with the transplant.

Prior to my bone marrow transplant (and in an effort to avoid any infection), I will have to visit a dentist. Considering how my immune system fluctuates, finding the time to see a dentist may prove more difficult than anticipated—I can’t have work done if I don’t have an immune system, and it’s something that needs to be completed prior to finding a donor.

There just seems as though there’s a lot to do. And, yes, I am afraid.

Once Course II’s 54 days have passed and a donor has been located, I will go to Boston for six days of intense chemotherapy. My immune system will be completely decimated. I will likely be sick. I will most likely lose my hair. After the sixth day, the donor’s bone marrow will be infused into my body. I will spend four weeks as an in-patient, waiting for the new bone marrow to take root. Praying, that the donor’s immune system won’t, in fact, kill me (because that is a possibility).

After, as my counts begin to rise, we will visit Boston once a week for a month to monitor for Graft-Host Disease. These visits will continue for six months, my time eventually shared between Boston and Burlington. I won’t have an immune system for much of that time and will be sporting gloves and a mask. I won’t be visiting people.

This is life. It makes my heart race. It makes breathing difficult.

But, there have also been beautiful moments—small moments of victory. My bone marrow now contains less than 1% cancer blasts. My Central Spinal Fluid (CSF) is still not clear, but we’re making progress, each day. Time is passing and with it, the remaining days in this treatment plan. There is an end in sight…albeit a fair distance away…but it’s marching closer and closer.

The week ahead will consist of four days (in a row) of chemotherapy. I am still occasionally struggling with fevers. My appetite has all but vanished. This isn’t easy.  I often tear up, unsure how I can fight this fight. Please, Dear Readers, send light, love and healing thoughts. We need all the strength that we can get.

 

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

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

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