Cocoon

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I remember, vaguely, that in our third-grade class we had several butterfly cocoons in an old, otherwise empty, aquarium. We studied each cocoon/chrysalis, waiting for a butterfly to emerge. I can’t remember if any of the cocoons actually produced a Monarch butterfly…and, if it did, I have no recollection of what we did with it…but I still get excited thinking about a creature of pure beauty busting out of its protective covering.

I feel that my own cocoon is slowly breaking open.

Now, let’s set the record straight here: I am not suggesting that I am, like a butterfly, a “creature of pure beauty”. I have dark moods and acne just like everybody else. I am, after all, a human being.

Yet, like a butterfly, I have been developing–growing–inside the safety of a cocoon.

My cocoon, however, is not made of protein or silk. It consists of medications and a survival-mode mentality. It is insulated with procedure masks and latex gloves.

More importantly, though, there have been days wherein I can see the light at the end of this life stage.

I’ll be in Burlington, VT at the end of February for some “just-in-case” MRI’s of my head and lumbar spine. My next appointment in Boston is six weeks away (the longest gap in appointments that I’ve had to date)! I am slowly being weaned off of my anti-rejection drug. I am warily turning my eyes to the future and how I might live, happily, in it.

Please, Dear Readers, keep the love, light and prayers coming. My wings haven’t fully developed yet—and there is still over half a year to go before I can venture outside without a mask—but it’s coming. And, with your help and good thoughts, I’ll be ready for it.

 

With Love,

Laura

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Fever

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Dear Readers,

I apologize for not posting anything of substance this week. As some of you already know, I have been struggling with a fever since Sunday. When I am feeling better, I will update you on our visit to Boston and the treatment plan. Until then, please send light, love and healing thoughts.

 

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

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