Hope, Even When it Hurts

My initial idea for this week’s blog post was to take a drive through the Adirondacks and snap a bunch of fall foliage pictures. I was going to share them with you today—as a photography essay of sorts—but my most recent check-up in Boston left me feeling exhausted. A road trip was simply out of the question.

What happened in Boston?

I may or may not have explained this forever ago—but when you have a bone marrow transplant, preparations for the procedure wipe out your immune system and all of the immunities you’ve accumulated throughout your life. This includes immunities from prior vaccinations and/or experiences with illnesses, such as the chicken pox. Although the chicken pox scars on my face say otherwise, according to my fledgling immune system, it’s like none of it ever happened. And, unfortunately, you do not inherit your donor’s immunities (I have no idea why those aren’t shared, but I’m sure there is a thorough medical explanation for it).

Although still 3-6 months away for me, before you can be released back into the “wild”, you must be re-vaccinated. Every shot you had as a child, you must have again. There is a schedule for this; for instance, at the 9-month mark you receive 4 shots. At the 12-month mark, you receive 7 vaccinations.

This past Wednesday in Boston, I received all of my 12-month shots, plus an inactive version of the flu shot. I’m not afraid of needles. I’ve grown accustomed to being poked and pricked. That doesn’t mean, however, that I’m numb to the pain of an injection (i.e. the kick of the Tetanus shot). It also doesn’t mean that the vaccinations can’t drain my energy and make me look, and feel, like an extra from a zombie movie set.

So, in an attempt to be something other than a zombie this past weekend, I drank copious amounts of orange juice and ginger ale. When the sun decided to shine, I bundled up and took a few pictures of how Autumn has touched our yard. We don’t have many deciduous trees around us, but there are a bunch of dried up, perennial flowers. Even withered, I think they’re beautiful. They hold the promise of rebirth in their faded petals and leaves. They’re a reminder to hope, even when it hurts.

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As always, Dear Readers, thank you for sending prayers, love, and light. They are most appreciated.

 

With Love & Gratitude,

Laura

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Space to Redecorate

My last post was about telling the truth—my truth—how I really feel, how recovery from transplant is progressing, how the timeline is not what I expected it to be.

The adage, “the truth will set you free”, is, well, true.

Once I had committed my truth to paper, once I had shared it—I felt a tremendous sense of relief, like I could breathe again. The weight on my shoulders was a bit lighter.

It—how I felt—wasn’t a secret anymore.

I didn’t have to pretend that everything was wonderful or even okay.

Perhaps the most surprising change is that telling the truth created space in my heart. The space isn’t a hole. My heart isn’t empty or missing something. There’s just more room in it for feelings other than fear and defeat. It’s only been a week, but I’ve decided to redecorate that space with beautiful moments and images.

Among those images, is the view from our front door.

Our house is surrounded, on two sides, by thick cedar hedges. A few deciduous trees have tried to grow amidst the cedar, stretching taller and taller to reach the sun’s warm rays. Wild grape vines cling to the cedars for support.

morning hedges

The only clear view we have is out the front door and windows, which face the road and an unmown field beyond it. To me, there’s something magical about fields. I could probably attribute this affinity to the French-Canadian habitant in my bones and in my ancestry. The field’s grass is tall now, shining golden at mid-day (this photo doesn’t do it justice). Milkweed is interspersed, attracting butterflies of all colors and varieties. I smile whenever I see a winged pair fluttering between the wildflowers.

Bambi, and his friends, would say that they’re “twitterpated”.

morning field

This attempt to redecorate my heart with beautiful moments reminds me of a song that I used to listen to when I was younger. In fact, after my last chemotherapy infusion (the first time that I had cancer), I blasted the song on my brother’s stereo. Even back then, my brother, a talented musician, had plenty of speakers; I put them to good use that afternoon.

The song that this view, that this moment in my life, evokes is entitled, “Beauty from Pain”. It’s by the Christian rock band, Superchick. Some of the lyrics are as thus:

                        After all this has passed

                        I still will remain.

                        After I’ve cried my last,

                        There’ll be beauty from pain.

                        Though it won’t be today

                        Someday I’ll hope again.

                        And there’ll be beauty from pain.

                        You will bring beauty from my pain.

Although the song makes me tear up, I also find it to be empowering. Hopeful. In many ways, it’s a reminder that I can keep going…that God will use this experience for good, and that my current health situation will not be my situation forever. My transformation as a person isn’t complete yet.

As the proverb on my home page reads, “just when the caterpillar thought the world was over, it became a butterfly”. I’m still in the process of becoming a butterfly.

Thank you, Dear Readers, for your continued prayers, love, and light. They are so very appreciated. We’re Boston-bound later this week for a transplant check-up and a breathing test (it’s standard procedure; I am not worried about my lungs, nor are my doctors). Please continue to send positive thoughts, though; as some of you know, Massachusetts’ traffic can be daunting. Thank you, thank you, thank you.

 

With Love,

Laura

A Study

First, Dear Readers, thank you for your prayers, love, and light while I was in Boston.

view of Fenway

The check-up portion of my visit went fairly well, although I did learn that I may have to remain immunosuppressed (without a functioning immune system) for longer than the average bone marrow transplant recipient. Why? I’ve had Graft vs. Host Disease (GVHD) so many times that it might have to be considered a “chronic” disease instead of just an acute condition.

Currently, the GVHD that I have is managed with my anti-rejection drug, which essentially suppresses my immune system. I have also been on a steroid for a fair bit of time. Long-term steroid use, unfortunately, can lead to other health issues, such as bone density loss and for some individuals, muscle wasting. Due to these negative side-effects, in “chronic” cases of GVHD, the patient often participates in a clinical trial or study. I don’t know yet if I have “chronic” GVHD—but if I do, and if it is offered, I will consider participating in a study.

Studies can be frightening (no one wants to feel like a guinea pig in a science lab), but studies can also save lives—or, at the very least, improve the quality of life—mine and maybe someone else’s, too.

There was good news at this latest appointment, too! My liver enzymes were normal again! I also started my vaccinations. I know it sounds strange, but I was elated to finally receive my Tetanus shot. The timing was perfect; a day or two later, I sliced my thumb open on a can.

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Secondly, I wanted to thank you for your patience while I was away from my blog. I realize that this post, too, is short. My legs (not exactly sure why) have been causing me a great deal of pain. I feel as though physical pain drains creativity.

Healing, as we all know, takes time.

Once again, Dear Readers, thank you for all of your kind support. Please continue to send prayers, love, and light. I need them. Thank you, thank you, thank you.

 

With Love,

Laura

Thanksgiving in June

Thank you, Dear Readers, for reaching out to me with a wonderful list of book titles, podcasts, YouTube suggestions, movie recommendations, and songs. You truly lifted my spirits! Although I can’t say that I feel 100% recharged, I do feel as though I am free to find beauty in the world around me again.

I mean, come on, look at these irises! They were a complete surprise to me. I had no idea that they were even growing around our front porch until Luna led me to them.

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I still do not have an immune system, so gardening is not an option for me. BUT I can enjoy observing what’s already growing here (I can also dead-head—while wearing gloves—which may be an experience that finds its way into a fiction project).

Speaking of fiction, I have been writing and submitting again. My novel, Greenwood (once known as Weather Witch), is now in the capable hands of Entangled Publishing. Hopefully, this time, it will exceed expectations, be on par with the trends of the literary market and find its way into a shareable format.

It would be a dream come true to see it published.

If that doesn’t happen, it’ll go back to hiding in my desk drawer…or excerpts will find their way to this blog. I always meant for Of Pieridae & Perras to include my fiction. Maybe it’s time to start sharing it….

Thank you, again, for sending me so much positivity. I am so grateful for each and every one of you. Your support has given me—and continues to give me—strength. Please continue to send light and love.

 

With Love,

Laura

Counting Blessings

Well, Dear Readers, as you know, I have Graft vs. Host Disease (GVHD) again. I still do not have full control of my arms, but the swelling in my left arm has gone down a bit.

The new medication regimen promises to be (slowly) successful.

With steroid use, though, you must be mindful of how you’re behaving. As some of you may have experienced in your own lives, steroids can alter mood. While I don’t usually “rage” on these medications, I have caught myself getting angry. Thinking mean thoughts. Becoming jealous.

These are all things that I do not want to be.

When I relapsed with Acute Lymphoblastic Leukemia (A.L.L) in February of 2017, I was determined to weather cancer treatment with grace and gratitude. I’m still not sure if I accomplished this…but it’s a life-goal goal I continue to work toward.

It’s hard to resist a chemical mood swing, but I am learning that being mindful of my temperament and of my surroundings helps. I can find comfort in the little blessings that have been coming my way—and reset my mood.

Blessing #1: This little guy or gal:

robin

She or he lands on the windowsill, every morning, and watches us (or the television). S/he tapped on the glass until I got up off of the couch and took a picture of him/her. It made me feel like some sort of fairy tale princess instead of the Hulk.

Blessing #2: The shrubbery growing along the house:

I have no idea what these plants are, but the new growth makes me hopeful for the future.

This coming week brings an MRI appointment. My neuro-oncologist just wants another peek at my brain. It’s precautionary. Still, good thoughts would be appreciated! Please continue to send light and love. Thank you, thank you, thank you.

 

With Love,

Laura

Nightingales and Chickadees

 

There is a crocus blooming beneath our apartment’s front window. Every time I see it, I find myself hoping that it is spring’s herald.

crocus

My scars, and my bones, need some warmth to chase away the ache of old wounds.

My spirits could use some sunshine to lift them up.

I’ve been relying on little things to elevate my mood. In recent days, I’ve found myself laughing as tiny bubbles float upwards from our kitchen sink, filled with dish soap. It reminds me of Disney’s cartoon version of Cinderella—when she was scrubbing her stepmother’s floor. It’s been awhile since I’ve watched the movie, but I believe it was at this point in the film that Cinderella started singing a song about the nightingale.

little things desk

Unlike Cinderella, it is the chickadees in the nearby cedar hedges that make me smile. Even though the sky is often cast in gray, and it’s cold out there, the chickadees welcome every morning with a cheerful tune. It gives me the courage to pack yet another box in preparation of our move.

Handling change—even positive change—productively and with ease, is not my forte.

We’re still hoping to close on the house by April 30th. I’m not sure if that will happen, but that’s the goal. I didn’t understand how involved (and stressful) the home-buying process was until we began it. I guess, maybe, most things in life are like that. We don’t know what we’re getting ourselves into until we’re in the thick of it.

Thank you, Dear Readers, for sticking with me. I appreciate your presence here as well as your commentary. Please continue to send love and light.

 

With Love,

Laura

Springing Ahead

gerbera

With the time change this past weekend, I began to think about the future. Usually, when I think about it, my mind becomes fear-filled. I’m not quite sure what happened, but this time, I started day-dreaming about the possibility of happier times. I thought I’d share some of the day-dreams that made me smile:

  • For those of you who don’t know, we’ve been house-hunting! Eventually, we will find the perfect house to turn into our own home. So, step one, find and get the house. Step two, hit day 365 post-transplant, obtain Boston’s approval, and bring Alderaan to his new home. Step three, once Aldie has adjusted to the change, we will adopt a (rather large, cuddly) canine that is feline-friendly.
  • Get Boston’s approval to play in the dirt because, although I do not have a green thumb (it’s more like the thumb-of-impending-plant-doom-and-death), I would like to garden. I want to plant giant sunflowers and hollyhocks. I want to raise string beans and snow peas. I am curious about growing Hops.
  • I am excited for the dietary changes that September will bring. I can’t wait to add honey to my tea! I miss honey—just like I miss Goat and Feta Cheeses. Some caramel popcorn would be nice, too.

I am well-aware that you cannot live in the future. We must live in the present. And, yet, in this present moment, I am tired of living in fear of another relapse and/or developing some secondary cancer. This isn’t my first rodeo with cancer, so I know that these fears will never entirely go away. I can, however, choose to ignore these dismal thoughts (unless it becomes apparent that there actually is something wrong with me). Instead, I can summon courage and stubbornness, boldly filling my mind with springtime sunshine, daisies, and the chirp of robins.

We were supposed to go to Boston this coming Wednesday for a check-up, but as many of you probably already know, we’ll be getting a Nor’easter instead. So, we’ll be playing it safe and staying home. I know I don’t really get a say in this, but I refuse to die in a car crash on my way to a cancer/transplant appointment. I mean, how ironic would that be?  So, no. No Boston this week, but I will call later today and reschedule the appointment. Please send light and love.

 

With Love,

Laura

Every Day as Valentine’s Day

vday-flowers-4-1708

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?