Facing Fear

Dear Readers,

We leave for Boston this week.

My anxiety about the bone marrow transplant comes in waves. Sometimes I am perfectly calm, relieved even, that the end of this cancer is finally within sight. Other times, I feel as though I am hanging on to my sanity by a mere thread. This treatment will not be easy. I am afraid. In the moments when the fear is too much, I remember my father’s recent words, “you’ve been through worse”.

It’s the truth.

I have been through worse. In July 2010, I almost died from a mysterious infection. I spent 10 days in the ICU and woke up on a ventilator, with liver failure, receiving dialysis. Additionally, the neurosurgeries of this past spring were certainly not a walk in the park. Compared to all of these emergent situations, what is one month at a prestigious cancer institute receiving a bone marrow transplant that could cure me of ALL forever? Is fear really a warranted reaction? Or am I exhausting myself before even arriving on campus?

I can’t take credit for surviving either ICU or my neurosurgeries. There were prayers being said for me during both of these crises and, without those positive thoughts and vibes, I’m not sure I’d still be here.

The treatment plan, for while I am in Boston goes as thus:
9/15 – Admission and Hickman placement
9/16 – Chemotherapy
9/17 – Chemotherapy
9/18 – Total Body Irradiation (TBI) – two times a day, 20 minutes each time
9/19 – TBI
9/20 – TBI
9/21 – Actual transplant

Designed to wipe out my immune system, I expect treatment to be exhausting. I expect treatment to make me nauseous and uncomfortable. I fully expect to be in the hospital for at least a month, or until my new immune system rallies.

Daisy grow kit

A couple of weeks ago, I received a basket with a variety of goodies in it—including the above daisy growing kit. For now, until I am cleared to garden again, the kit will remain as it is—unused but full of potential beauty—just like the future.

Please continue to send light and love our way. We can’t do this without you.

With Love,
Laura & Seth & Co.

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Days Like Today

HL Window View - edited

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

 

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