Route Recalculation

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Apparently (I hope I don’t jinx myself), I have a green thumb for outdoor container gardening!

I learned some things on the way to my most recent appointment in Boston:

One – Black-eyed Susans grow in colossal patches alongside New Hampshire’s main roadways. When the sun shines on them, they glow gold. I’ve never seen so many of these flowers growing together! It was breathtaking. If the traffic had been slower, I would have taken a picture.

Two – Traffic stopped for an hour on I-93 due to an accident. Someone involved in the collision was air-lifted out. Even amid the sirens of police cruisers, ambulances, and fire trucks, there was silence. Silence for the injured. Silence for the “what-if’s”. A silence that is not heard, but felt.

I learned some things while in Boston:

One – Although I stopped taking my anti-rejection medication in June, it’s still circulating in my body. It takes three months for it to clear out. Until then, I will continue to take an anti-viral, Acyclovir, as well as an anti-biotic, Bactrim. We did eliminate one medication from the list, though. Bye-bye Protonix!

Two – The second dose of a vaccine can be worse than the first dose. The first time I was given Shingrix, I also received seven other vaccinations. At the time, it was difficult to tell which vaccine site was hurting the most or which vaccine might have made me feel like a zombie. This time, Shingrix was the only injection that I received. And it hurt. I spent Thursday, on the couch, nauseous. The positive side of this? Shingrix is replacing the Chicken Pox vaccine in the post-transplant re-vaccination procedural. That’s one less live-vaccine that I’ll be receiving in September!

I learned some things while feeling half-dead on the couch:

One – It’s okay to rest. It’s something that I should have done more frequently after relapse in 2017, but, for various reasons, I was unable to.

Two – There are many, beautiful things in my life. We may not have New Hampshire’s Black-Eyed Susans in our ditches, but we do have these:

blue flower

It’s Biblical-sounding, but you do reap what you sow. In my particular case, it’s Johnny Jump-ups descended from the hanging baskets that my parents gave me last summer.

Johnny

Johnny, obviously, has not had an easy life. He looks a bit beat-up. He doesn’t let it get him down, though; every morning, Johnny wakes up, and soaks up the sunshine.

Thank you, Dear Readers, for your presence here today. Thank you for all of the prayers, love and light that you send my way. This week, I will be having a Bone Density Scan (it’s a fairly common exam after cancer treatment). I’ve had one before. It doesn’t hurt. I am, however, feeling anxious about the results.

Bone Density can be affected by many factors, including cancer treatment. Since my relapse in 2017, I’ve had massive doses of Chemotherapy, Localized and Total Body radiation, Ovarian Failure (did you know that Estrogen is essential to a woman’s bone health?). I will admit to being afraid that my once-a-day, calcium supplement and my Hormone Replacement Therapy have not been enough to counteract the side-effects of all of these (ironically) life-saving toxins. Of course, we’ll see what the scan reveals, and make a plan to deal with whatever the results are. Until then, please continue sending prayers, light, and love. Thank you.

And, to leave you on a positive note, here are some pictures of our newest (and youngest) backyard visitor:

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With Love & Gratitude,

Laura

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Not Humpty Dumpty

LP Iris and maple

A couple of weeks ago, I told you about my oncology follow-up appointment. It was at this visit that my oncologist said, “We did terrible things to you, and now it’s time to put Laura back together again.”. This declaration still resonates with me, still gives me hope that I can live a healthy, fulfilling, well-rounded life. It makes me believe that all of my broken pieces can be reassembled.

I equated myself to Humpty Dumpty in that blog post…and I shouldn’t have. Nursery Rhymes, Fairy Tales, they all have a melancholy, darker (usually forgotten) side to them.

According to Project Gutenberg (which shares literature that is out of copyright and now considered public domain!), the nursery rhyme featuring Humpty Dumpty goes something like this:

Humpty Dumpty sat on a wall,

Humpty Dumpty had a great fall.

All the King’s horses

And all the King’s men

Cannot put Humpty together again.

The rhyme appears exactly as it did in childhood. The real surprise is that the rhyme is attached to a story, and appears at the end of that narrative.

In L. Frank Baum’s rendition of Mother Goose in Prose (illustrated by Maxfield Parrish), Humpty Dumpty is one of the twelve eggs laid by the cunning, Speckled Hen. To summarize/paraphrase, Mama Hen leaves the nest to grab a bite to eat, and, during her absence, her wily eggs begin to kick each other for more room. Humpty is, by far, the largest egg in the nest and he’s balancing on the edge of it. Thus, when his siblings start misbehaving, he’s pushed completely out of the nest. Fortunately, for Humpty, there’s a haystack below the nest.  He rolls down it, settling on the barn floor (in one-piece).

Humpty, on the barn floor, can see the world beyond the barn’s doors. It’s beautiful!

English Roseum New Growth

He wants to see it, so he saunters (my word, not Baum’s) across the barn floor. He meets another egg—from the Black Bantam’s nest—and they set off to explore the world together. Eventually, they arrive at a large, stone wall. They can’t climb the wall, but they find a hole to squeeze through.

garden door

On the other side of the wall, is the King’s castle, lush gardens, and a pond. The eggs want to visit the birds swimming in the pond, but they cross the road at an inopportune time. As they start walking across the road, the King and his men come riding through. Humpty is able to avoid injury, but his friend is slower, and is crushed by a horse. He sits by the roadside, mourning her death.

The princess finds Humpty and gives him a tour of the gardens and the majestic palace.

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When her father and his men return home, the princess takes Humpty to the top of the gates to watch the entourage’s arrival. Humpty, sitting in a groove in the stone wall, forgets where he is, leans forward to see more, and plummets to his death.

pink flowers

Back in the palace, the King is surrounded by his men—many of whom want to ask for the princess’s hand in marriage. The King senses that he’ll make enemies if he chooses a suitor, so he declares that the princess will only marry the man that can stump him with a riddle. Every man fails—except for the last one. The princess, when no one is paying attention, gives this young man the riddle of Humpty Dumpty. The king cannot guess who or what Humpty was, and so the princess and the young man are married. It’s a happy marriage, as the pair are already in love.

Baun’s tale concludes, “And thus did Humpty Dumpty, even in death, repay the kindness of the fair girl who had shown him such sights as an egg seldom sees.”.

pink flowers 1.0

So, Dear Readers, comparing myself to Humpty Dumpty, was a wildly, inaccurate analogy.

First, I am not a runaway egg.

Second, I did not fall off of a wall.

Third, I do not need all of the King’s horses and men to put me back together again.

I need God. Doctors. Counselors. My husband and our fur babies. Family. Friends. Healing is multifaceted, because we are complex creatures. Sure, you can extricate the cancer and stitch up the wounds—but it won’t heal the spiritual being, the emotional being.

And, that, restoring one’s soul and self-worth, might just be the hardest part of recovery.

Thank you, Dear Readers, for your presence here today. Please continue to send prayers, light and love. I am on the upswing—which is a relief—but there is still work to be finished and goals to be accomplished. Yes, it is a new chapter, but, as any reader or writer can tell you, every chapter has its own charms, problems, and plot twists. I’m hoping for only good things.

 

With Love & Gratitude,

Laura

This is Peace. This is Panic. This Might be Primaveral.

As you know, Dear Readers, my life has been a whirlwind of diagnoses, followed by medical procedures. I’m not particularly skilled at either resting or relaxation—but I can recognize them when I see them:

peace

This picture was taken last week. I was sitting on the love-seat, editing my latest manuscript. When I looked up from the text, both of the fur-babies were sleeping. Alderaan was on the mantle, and Luna was in her favorite spot, the recliner. The fire flickered quietly on the hearth. I took a picture, to capture the moment. This, I knew, was peace. Rest. Healing.

I am so grateful for these little moments.

And, yet, while writing these words, and studying that picture, I had a panic attack. There were no warning signs; I simply, and suddenly, had difficulty breathing. I felt like my heart was wedged between my clavicle and my first rib. I’ve had panic attacks in the past, but it’s been awhile; this one caught me by surprise. For a minute I thought, like most people do, that I was having a heart attack.

The panic attack eventually passed, and with it, the chest pain. I was exhausted afterwards, and left wondering what had triggered it. My brain, although tired, conjured Alanis Morissette’s song, “Ironic”. Because, yes, it was ironic to have a panic attack while thinking and writing about peace.

I couldn’t find a satisfactory answer as to what triggered the attack. Normally, I would sift through my anxious thoughts to find the source. Identifying our fears and confronting them are, in my experience, one of the only ways to beat them. Sometimes, though, that’s contraindicated—especially when rest is required. As the adage goes, “Let sleeping dogs lie”.

If the temperature is mild, Luna likes to take brief naps in the green lawn chair on our back porch. When she’s not resting, she’s using the chair to survey her territory. I realized, recently, that she might also be observing primaveral changes. There are some signs of an early spring: the angle of the sun and the moon have changed, and, now, it is not only the blue jays’ squawk greeting the sunrise. There’s another bird, hiding in the cedar hedge. Its song is more melodic, it speaks of warmer temperatures and flowers poking through the frozen earth.

It’s early yet (and it is snowing this morning), but spring is not far away.

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These are obviously fake tulips—with price tags still on them—but I find the colors inspiring…so I thought I’d share them with you. I hope, if you need to smile, that they help.

Thank you, Dear Readers, for your continued prayers, love and light. Your presence here, at Of Perras & Pieridae, keeps me going. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

On the Ice

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Both of our sidewalks—and our driveway—are currently miniature ice rinks.

They’re slick, slippery, and challenging to walk on. I’ve nearly wiped out on four separate occasions. Due to this, I’ve decided to be a bit more cautious and use a ski pole to help me get to where I need to go. It’s slow-going, but to quote a popular adage, “it’s better to be safe, then sorry”.

I imagine, that those of you who live near us, are experiencing similar conditions.

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When I look outside at this ice—especially the large patch next to the garage door—it summons memories of winters past.

ice next to garage
Underneath that dusting of snow, is ice

There were several winters in which my father made a shallow ice rink in the side-yard. My brother and I were still in grade school at the time—and huge fans of “The Mighty Ducks”.

The goal—the reason for creating an ice rink—was to teach us how to skate.

Our parents bought us hockey skates, because they have better ankle support. They were black with white laces. The blades glimmered, new. Our father used to play hockey in high school, and later, in a men’s league, so we’d don his old helmets. He’d skate with us, keeping an eye on us as we pushed chairs across the ice.

little icicle

I will admit to not being good at it. In fact, I’ll go as far as to say that I can’t skate.

Why? How could such a thing happen when I had the best skating coach that a little girl could possibly ask for?

I was afraid of falling. Because of this fear, my body would tense up, rigid. I seem to recall that my knees should have been slightly bent, a bit relaxed, even. I couldn’t do that. Relaxing, to me, meant giving up control.

Control is believed to be power; but, it’s a complete myth. We’re never 100% in control of our lives. Sure, we can have a direct impact on how our lives unfold via the choices we make (to pursue an education, to apply for a particular job, to eat healthy foods and exercise). We can control what lens we use to view the world. Viewing the world through a positive lens can make life feel and look better; conversely, viewing it through a negative lens, can make it quite awful.

I, obviously, didn’t know any of this when I was a little girl on that ice rink. I remained tense, hoping to keep every ounce of control that I thought I had. There are consequences for not relaxing. In the adult world, it’s called, “burn-out”. As a little girl in skates, it was a missed opportunity.

Learning how to relax—giving my mind and my body a break from stress—is now at the top of my priority list. It encourages healing (which I have plenty to still do). I don’t need to control everything about my life; “burn-out” and “missed opportunities” are too steep a price to pay. As another adage reminds me, it’s important to, “stop and smell the roses”. Relax, slow down enough to notice the little things in life—which, more often than not, are the most beautiful things.

more icicles

Will I ever wear a pair of skates again? I don’t know. Maybe. We’ll see.

Thank you, Dear Readers, for the prayers, light, and love that you send my way. This past week was full of appointments—and your good wishes carried me through. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

Snow Day

garage roof

As I write this, we are experiencing our first real snow storm in the house that we purchased in May. The natural gas fireplace is doing a lovely job of keeping us warm. The evergreen-scented candle in the kitchen is helping to usher in wintertime cheer.

We live on a well-traveled road, which, we both assumed would be one of the first roads plowed when it snowed. Turns out, that’s not what happens in this corner of the world.

This does, however, allow for observation (a writer’s favorite hobby; we have to get material somehow!). There appears to be two kinds of drivers traveling this morning: the fearless, who drive at break-neck speeds, and the responsible, who drive according to the road conditions.

It’s now 6:39am, and conditions have just improved—a snow plow has rumbled down the road.

shrub with red berries

Snow plows make my heart fill with excitement. I think it’s a lingering response from my childhood. Snow plows often meant school cancellations. I appreciated days off from school like every other child. As an elementary student, a snow day meant playing outside with my brother. As a middle school student, I’d use the time to write (yes, I was writing stories even back then). I would also draw my characters in my sketch book. It was a great tool for remembering what each character looked like.

Adults usually don’t have snow days, but I have decided to make today my own personal snow day. I won’t be building snowmen because a) we have a dog and I’m not interested in discovering any “treasure” that she may have left behind, and b) I can’t walk correctly in my snow boots.

paw prints_

It is the perfect day, however, for painting.

I’ve been chipping away at a Christmas-themed art project, but something has been missing. I played Christmas music while painting…and still the spirit wasn’t there. I think I needed the magic of the snow to inspire me.

I moved my artistic operation downstairs, to the kitchen table, where I could paint and watch the snow accumulating in our backyard. The snowflakes, as they fell, were mesmerizing. It was calming. Peaceful.

icicles

I still haven’t finished the art project…but maybe the goal of a snow day shouldn’t be, “let’s see how much we can get accomplished”. That was the motto I had in middle school and high school; I guess I’ve never been able to properly relax. Thankfully, this self-declared “snow day” proved that I can sit and admire the falling snow. It also proved that sitting down to catch my breath, is not the end of the world. In fact, it is a beginning—a lesson that this winter, even during lengthy winter storms, I can use my time to restore both my body and my soul.

Thank you, Dear Readers, for your continued love, light and prayers. Your encouragement keeps me going. I am almost completely off of steroids! It may not seem like a big deal, but, for me, it’s a huge step in the right direction.

 

With Gratitude & Love,

Laura

To “Be Still”

Last week I wrote about promises, including a promise that I made to Alderaan to play laser pointer with him every morning. As I stated previously, this promise is also a promise to me—to slow down and cherish the little moments of this life.

One reader (thank you, Victoria!) reminded me that God also calls us to, “be still”. This sounded familiar to me…but not familiar enough that I could recite the book of the Bible that it’s located in, the chapter number and/or the verse number. Curious, I asked her to point me in the right direction.

The Biblical passage that she had in mind was, Psalm 46:10.

In the New International Version of the Holy Bible, Psalm 46:10 reads as thus:

He says, “Be still, and know that I am God;

I will be exalted among the nations,

I will be exalted in the earth.”

As someone with multiple anxiety disorders, being still is not my forte. I am a restless person with perfectionist tendencies. It’s not a fun mix. Even when I am over-tired, I will force myself to check the next thing off of my “to-do” list (i.e. wash the dishes, fold the laundry).

This weekend, though, I had some help with the call to “Be Still”. My left ankle and foot were mysteriously swollen. In an effort to reverse that trend, I had to sit down with my foot elevated. It was torture! I had too much to do! Christmas is coming—I have ornaments to make (guess my family knows what they’re all getting now!). Lounging on the couch, with a bag of frozen peppers on my foot, had not been a part of my plan.

I started rehashing all of the plans that I had had. That’s when I began to wonder: does “be still” apply only to physical activity? Or does it include our thought processes as well?

My mind is never still, never quiet. I am always worrying about something. Always plotting the next chapter. Maybe slowing my body down isn’t enough…maybe learning how to silence all of the worries and the negative thoughts that clutter my mind is just as important.

At first, this next bit is probably going to seem like a tangent. Bear with me, please.

In 2008, P!NK released an album entitled, Funhouse. Included in that album was a song, “Ave Mary-A”, which also alludes to the idea of being still. Now, because I am a worrier, I will repeat the usual statement regarding sharing music: I do not own these lyrics nor do I have any rights to them.

BUT they are so important!

An excerpt from P!nk’s song is as follows:

Help me to let go

Of the chaos around me

The devil that hounds me

I need you to tell me

Child be still.

From the moment that I first heard this song, I knew that it was powerful. It quickly became one of my favorite P!nk songs. It remains so to this day.

I listened to “Ave Mary-A”, on repeat, this past weekend as the snow fell. Be still. Peaceful.

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Thank you, Dear Readers, for your continued prayers, love, and light. If my ankle and foot are still swollen after this entry is posted, I will have to contact my transplant team in Boston. They will be sending me for an ultrasound (at a local facility, thank goodness!) to rule out the possibility of a blood clot. Please send good thoughts. They are appreciated!

 

With Love & Gratitude,

Laura

 

Words of Comfort, of Healing

 

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In response to my last blog post, someone I consider to be a dear friend kindly asked:

“…What is your favorite thing for people to say in support? Are there certain statements that help noticeably more than others? If all we have are words to help you I’d like to use the words that mean the most to you.”

I didn’t have an answer.

As a writer, I always have words—or, rather, the arrangement of words—on my mind. For instance, I spent a great deal of time trying to describe the color of the Sternbergia lutea flower for my novel-length manuscript, Greenwood. More recently, I’ve been searching for the right words to describe a fictional Norwegian Forest cat named, Birkir. He has an important role in my current writing project, Skraeling.

Despite this constant meditation on words and how best to use them in fiction, I have rarely thought about what words would be most comforting to me in uncertain or frightening situations. I couldn’t answer my friend’s question until this past Thursday morning.

Many of you may remember the notice I posted regarding the week of June 25th. Namely, I wrote that there wouldn’t be a new blog post that week due to having so many doctors’ appointments in Boston. Among those appointments was a surgical procedure—meant to diagnose the potential presence of a secondary cancer. I’ll spare you (and me) the details of “what it might have been” and “what they did to me”. Instead, I’ll just say that I received an email on Thursday morning announcing that the procedure results were in. The email also listed the results…and I couldn’t decipher them.

I did what anyone with a difficult medical history would do—I panicked. I cried. Yes, I have been a patient, in various capacities, since I was 23 years old. Although my sojourn through cancer and transplant-land has been long, it does not mean that I can speak the language of the medical field. Overwhelmed, I kept scrolling through the procedure results, desperately trying to translate them.

Finally, I worked up the nerve to call the doctor’s office.

No one picked up. I had to leave a message.

Surprisingly, while all of this was unfolding, something wonderful happened. I realized that I did have an answer to my friend’s question. As found in the New International Version of the Holy Bible: “For he will command his angels concerning you…” Psalm 91:11a.

Alderaan July 2018

I was spiraling in a panic attack, but I kept repeating the verse over and over again. Soon, there was nothing else in my mind. The Bible verse was in my blood, in my lungs. It was the ocher buoy keeping me afloat in a sea of anxiety.

When I finally received a call back from the doctor’s office, I was collected enough to hear the words, “very good results”.

And, then, I started crying again—big, grateful tears.

Fortunately, I don’t have a secondary cancer. I will have to be monitored for any changes, of course, but in this present moment, I have time to rest and heal. I also now have words to comfort me when old fears rise.

pink wildflowers

Please continue to send prayers, light and love, Dear Readers. They are both needed and very much appreciated. 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

A Temporary Absence

rain on leaves

Dear Readers,

Please note that I will not be sharing a new blog post this coming week.

As some of you may already know, I will be in Boston for several appointments on Monday, June 25th—including a surgical procedure. If possible, please send light, love, and prayers my way. Thank you, thank you, thank you.

With Love,

Laura

Graft vs. Host Disease

First, Dear Readers, I apologize for the tardiness of this post. I spent Monday at a follow-up appointment with my bone marrow transplant team in Boston.

As some of you already know, I’ve been experiencing shoulder and arm pain. I had originally thought that the pain was the result of relying on my arms to pull myself up the stairs in the new house (my legs are a bit wobbly still).

The source of the pain, however, is not as simple as overuse or a strained muscle.

I have graft vs. host disease (GVHD) again.

 

Just a little vocabulary review:

Graft – harvested and transplanted bone marrow from a donor

Host – me, my body.

 

Some of you may remember from an earlier post in 2018, that I’ve already experienced GVHD as an irritating skin rash. This time, GVHD is causing inflammation in my shoulder joints. Lab results also show elevated liver functions. So, yeah, it’s most likely in there, too.

The truth is, 70-75% of bone marrow transplant recipients experience GVHD on some level. Thankfully, it’s not all gloom and doom. GVHD means that my donor’s graft is capable of recognizing foreign substances. Right now, I—my organs, my joints—they’re foreign to her. She’s kicking my butt, too, which means if Acute Lymphoblastic Leukemia ever decides to pay me another unwanted visit, the graft will know exactly what to do with/to it.

Due to the fact that so many bone marrow transplant recipients develop GVHD, my doctors know precisely what to do to clear me of it. I will be taking a higher dose my anti-rejection medicine and adding a steroid to my daily regimen. Together, these two steps should tame the GVHD enough for me to gradually become comfortable again.

Please continue to send light and love, Dear Readers. I need them. Thank you, thank you, thank you.

 

With Love,

Laura