No Accidents

On August 21st, 2018, I had MRI’s of my lumbar spine and head. Imaging was followed by an appointment with my neuro-oncologist. She is a wonderful doctor and, in addition to making sure that my brain is disease-free, she monitors me for seizure activity.

It, apparently, has been six months since my last seizure.

The medication that my doctor placed me on has worked thus far. And, as long as I continue to take that medication as prescribed, and remain seizure-free, I am allowed to drive.

Yes, they’re letting me behind the wheel again!

steering wheel

But, whoa, girl! You can’t just get in a car and go….

In many ways, I feel as though it’s been a lifetime since I’ve driven anywhere. It’s like I’m 15 years old again, driving my father’s Chevy S-10 around our yard, narrowly avoiding trees. Driving did not come naturally to me and, now, I have a lot to relearn.

I stopped driving shortly before I was officially diagnosed with relapsed Acute Lymphoblastic Leukemia. The tumor in my spinal cord (which no one knew was there until February 2017) made manipulating the brake and gas pedals extremely painful. I was too slow braking and I knew I was putting my life—and others’ lives—in jeopardy. To me, it was an unacceptable risk. So, I stopped driving.

That was in my Civic Coupe—the car from my single lady days, if you will. My fiancé and I traded our respective vehicles in when we realized a bone marrow transplant in Boston was inevitable. We needed a vehicle that a six-foot-five-inch tall male could comfortably sit in (the Civic was too small). We needed something that was fuel efficient (his truck, although loved, was not). We ended up with a sedan. Boxer engine. Slate blue. Great MPG.

wheel

Now that I am allowed to drive again, it’s my turn to get comfortable with this trade-in. For someone with spatial awareness issues, though, adjusting to a change in vehicle size is a challenge. To be on the safe side of things, I prefer to drive with a co-pilot. I like to stick to quiet roads. No rush hour for me, please.

Sitting behind the wheel again, though, has surprisingly stirred up some memories from my high school Driver’s Education class. I can picture the manual that we were assigned to read. I can remember driving through one of the small towns near our high school. I can remember struggling with parallel parking. On one of these voyages—in the Driver’s Ed car packed with four students (one driving and three in the backseat)—the instructor asked a rather serious question.

I can’t remember the exact wording of the question but the answer was, “There is no such thing as an accident. There are only collisions.”

Only collisions.

It’s an odd thing to remember, I suppose—but I do believe that nothing is entirely accidental. As I wrote in my last post, there is a plan. We simply don’t know all of the details. It becomes a bit clearer, I think, when circumstances begin to collide.

Please, Dear Readers, continue to send prayers, light and love. Your positive thoughts give me strength; you fuel and fan the little spark of hope in my heart. It glows brighter because of you. Thank you, thank you, thank you.

 

With Love,

Laura

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Synchronicity

clock 2.0
Many thanks to my brother for taking this picture; I only have digital clocks in my house.

I constantly see memes that refer to patience and time. I am guilty of sharing those memes rather frequently. And, while I do believe that, “things happen for a reason”, that adage has never felt as real to me as it did this past Wednesday.

We had to travel to Boston for another transplant check-up. My check-ups usually consist of two parts: lab work and seeing a member of my transplant team.

Occasionally, there are additional tests or specialists to see. This was one of those times. In between bloodwork and seeing my transplant doctor, I needed to do a Pulmonary Function Test (PFT). Was I worried about my lungs? No. Was anyone worried about my lungs? No. I can breathe; the test was simply part of the after-transplant care plan, to see if chemotherapy and/or radiation had done any damage to my lungs.

Those of you who are friends with my fiancé on Facebook know that this trip to Boston was rather speedy. There was, of course, traffic as we drove into the city, but it didn’t come to a standstill. Unusual? Definitely. We just kept moving along, driving smoothly into Boston.

We were an hour early.

Another abnormality—the lab called me back to draw my blood almost immediately. This NEVER happens. Phlebotomy is usually 20-minutes behind schedule every time we go to Boston—this day, though, there was no wait. The nurse quickly and expertly accessed my power port, drew 14 vials of blood, and sent me off to my PFT.

The synchronicity—the perfect timing of the commute and the lab work, meant that I was an hour early for my PFT. I had barely sat down in the waiting room when I was called back to begin the test. The specialist conducting the test was kind, but also quite focused on time. In retrospect, that focus makes sense; PFT tests examine your breathing—how long you can exhale, how long you can hold your breath. At least that’s what I remember…my Post-Traumatic Stress Disorder was triggered shortly after we began the test.

For those of you that don’t know, the first time that I had cancer in 2010, I developed an infection that shut down my kidneys and liver. I woke up on a ventilator in the Intensive Care Unit (ICU). Eight whole years later, I still cannot be told to focus on my breathing without mentally going back to that ICU hospital bed. The medical apparatus used in the PFT exam is quite different from a ventilator—but it doesn’t matter. It was medical equipment, in my mouth, and it involved breathing.

I lost it.

If it hadn’t been for the respiratory specialist’s kindness, or her accent, I would have quit.

Her accent? Yes, her accent and her use of a particular word brought me back—first to a happy memory, and then to the present moment.

The word she used, translated into English, roughly means, “this and/or that”. In some ways, it’s the equivalent of the English, “well then”. I can’t tell you the word because I have no idea how to spell it, but I first heard it from a professor who guided me through a college internship in Canada. The professor was a light whenever homesickness tried to set in. She was from the Czech Republic and would use the word quite frequently.

Hearing that word again, in a vulnerable moment, freed me from the ICU room in my mind. Ironically, the word helped me to breathe.

When I finished the PFT, the specialist—who was from Russia—gave me a hug. I apologized for my break-down. She shook her head at me. “You’ve been through a lot. You can cry whenever you need to; cry wherever you need to.”

My lungs, Dear Readers, work. Apparently, my ears do, too, because I was able to pick out a word that I haven’t heard for nearly a decade. This, my friends, is synchronicity—when events align as if a divine plan is unfolding. As is written in the Holy Bible: New International Version, in the book of Jeremiah 29:11: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

If we hadn’t arrived in Boston early, if the lab had been running behind schedule like it usually does, would I have had that particular respiratory therapist for the PFT? Probably not. It might sound crazy, but I think I was meant to meet her—because someone upstairs knew I was going to need that accent, and that word, to pull me out of a PTSD episode and guide me through the remainder of the respiratory test.

Please continue to send prayers, light and love—they’re working. My transplant doctor estimates that I’ll be on immunosuppressants for another three to six months. In that time, my team will slowly, and carefully, be tapering me off of these medications as well as all of the accompanying medications (anti-viral medications, antibiotics). The timing of it all may not be what I would have liked, but there is a pattern. There is, clearly, a plan.

 

With Love,

Laura

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

All of The Feels

It’s 4:36am, to be exact.

And, it’s time to be honest.

I shield the people I care about—including you, Dear Readers—from a lot of what I feel and live with on a daily basis. I don’t like people worrying about me; I certainly don’t want pity. I just want my life back…which…having survived cancer when I was in my early twenties, I know is impossible.

You can’t go back.

The setting for ‘normal’ has changed. Forever.

Of course, this isn’t a rule that applies to everyone. There are survivors that accomplish amazing feats after treatment ends. Sometimes those achievements occur in the world of work. Sometimes it’s on the side of a mountain. Sometimes, they emerge from the cancer world happy, healthy, and stronger.

But not me. Not right now, anyways.

I only hinted at this in my last post, but my heart is currently broken. My transplant anniversary is quickly approaching and, by most standards and available literature, my immune system should be ready to go at that point.

The hard truth is, my immune system won’t be ready.

I’m still on too many immunosuppressants for my system to come back on time. It is currently impossible for me to be taken off of these medications as my borrowed bone marrow and my body don’t get along like they should. To take away the anti-rejection drug or the steroids (both immunosuppressants), I would become infested with Graft vs. Host Disease (GVHD). It has happened nearly every time that my transplant team has tried to taper me off of these medications.

So, what does that mean?

My transplant anniversary, September 21st (also known as my “1st birthday”), is not going to be the magical day that I had so foolishly hoped for. All of this time—the entirety of 2017 and 2018—I’ve been lying to myself. I kept pushing through the appointments, repeating: September. September. Everything will be better in September.

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September isn’t going to change anything for me. I won’t be freed from wearing a surgical mask and gloves in public. The strict dietary rules will continue to be applicable. Worst of all, I won’t be able to live with Alderaan (our cat) until my borrowed marrow and my body decide that they like each other.

All of this hard work, all 14 medications that I take every damn day, all of these appointments—and my immune system isn’t going to be ready.

If this post sounds a bit angry, it is. I can, and I will, blame it on the steroids. It probably also sounds a bit like a pity party—and maybe it is, because I don’t usually acknowledge these emotions—so, now, while I’m still waking up, these feelings are emerging without restraint. I feel defeated. I feel like I’ve lost myself. Who was I before all of this? I don’t know. I can’t remember her.

I suppose…if I have to look on the bright side…this is an opportunity to build a new me—from the ground up. My prayer for the remainder of August, and however many months it takes for my immune system to come back online, is that this extended recovery period ushers in something good. Maybe, just maybe, a fellow ‘slow healer’ will find this post, and won’t feel so alone. Maybe they won’t feel different like I do. Maybe they won’t feel like a failure.

Please send prayers, love, and light, Dear Readers. I have cranial and lumbar spine MRIs scheduled for August 21st. It’s precautionary, but there is always the fear that the scans will show something unwanted.

 

With Gratitude,

Laura

Free Write

Most of the writing that I do these days is quite strict. Skraeling, my manuscript-in-progress, is now 70,497 words strong. The protagonist, Aurora, is the first anti-heroine that I have ever created. I love the story, the challenge that it poses, the research it has required—but I miss playing with words.

To regain that sense of play (and have some fun), I decided to use this week’s blog post as an opportunity to experiment, to record observations, to simply let the words take whatever shape they wanted to. For this week only, my traditional blog post has been replaced by what is essentially a free write.

Nearly every English course that I have ever taken has employed free writing for at least one class session. Why? One plausible reason is that free writing helps students get words on the page by eliminating worries about grammar, story structure, and spelling. In free writing, these conventions don’t matter—it’s the ideas that do. Typically, free writing is not edited (but the perfectionist in me happily broke that rule). So, here it is. This is where my mind wandered to:

I recently heard Autumn’s first cricket chirp.

It seems a bit soon for the insect to resume its song. Yet, there it was, chirping a melancholy tune. Too soon, too soon, I think. I need more time. I’m still on too many immunosuppressants. The anniversary of my bone marrow transplant is approaching; my immune system is supposed to be mature by that date. My bones, and my borrowed marrow, tell me that it won’t be.

not a cricket
Not a cricket, but I thought this little guy (or gal) makes a good substitute.

I saw the first, crimson leaf on an Euonymus alatus (commonly known as a Burning Bush) yesterday.

My memory—what remains of it—pulls me back to the tan-colored, bricked buildings of our college campus. I think I see you there, amid the parade of departing students, but what do I know? I, the Woodcutter’s daughter, had to research which tree the acorn belongs to. Worse still, I had somehow forgotten that the helicopter-like seeds, the ones that spin and twirl to the ground every Fall, belong to the maple. These facts were once in my blood. How could I have forgotten?

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I have felt the comforting warmth of a favorite, over-sized sweater nearly every morning this past week.

The mornings, before the sun rises in earnest, are quite cool. I shrug into the sweater—the black and white one that my mother bought for me the first time that I had cancer—and I put the hood up. From my seat at the kitchen table, I can stare out the window. I can watch the sky as it begins to lighten, darkness melting away.

I tasted a tart apple and wanted to add cinnamon, sugar, butter, and oats.

apple crisp recipe

There’s more to the family recipe for apple crisp than all that, though. Once out of the oven, you will need vanilla ice cream to melt on top of it. Remember, innovation is acceptable, but only if it’s as sweet as a fine drizzle of caramel.

I smelled bitter, dark-roasted coffee.

morning coffee

Bitter is better at 4am in the morning. I don’t add sugar to my daily cup; God knows I have enough cavities. I only consume two cups—preferably using one of our giant mugs—and I’ll have to stop drinking after that because my heart will begin to race. My fingertips follow suit, flying over my laptop’s keyboard.

I am my own cricket, tapping out an oftentimes melancholy tune.

keyboard
Please excuse how dirty my keyboard is. The last time I tried to clean a keyboard, I accidentally fried the entire laptop. 

Thank you, Dear Readers, for allowing me to experience writing as a creative outlet once again. I apologize if this post makes very little sense, but please know that it was incredibly fun to write! I needed to do this. And, who knows? Maybe my next novel-length project will have its roots in this text.

As always, thank you for your prayers, love, and light.

 

With Gratitude,

Laura

Puzzle

Right before I opened my eyes this morning, I thought I saw the gray outline of a jigsaw puzzle.

Was I dreaming? Yes.

Was this ten-second snapshot of a dream significant? Most definitely.

I have been interested in the meaning of dreams since I was in Middle School. Naturally, I had to Google search this one, too. I didn’t dig too deeply—because it was 5am and also my scheduled writing time—and as any writer will tell you, you must fiercely protect your writing time.

For writers, while internet searches can be a tremendous resource, they also have the potential to evolve into enormous distractions. Keeping an eye on the clock, I skimmed just enough sites to learn that dream interpretation for this baby was not going to be quick.

I also learned that, for my brain health, I should probably be assembling jigsaw puzzles on a regular basis.

puzzle
Above: A dear friend, and fellow Jane Austen fan, gifted me the above jigsaw puzzle when I relapsed in 2017. Isn’t it beautiful?

I enjoy building jigsaw puzzles. The first time that I had cancer, I assembled puzzles quite frequently. I stopped when Wallace the Wonderful decided that he, too, needed to spend time with the puzzles. At night, my writing partner would prowl out to the kitchen. He’d leap unto the table where the puzzle was, and dash the partially built puzzle apart. As I believe most cat owners know, once a feline destroys a puzzle, and pieces go missing, it’s hopeless. You’re never going to find that missing piece (unless you move domiciles, in which case, it’s underneath your couch with at least a dozen hair ties).

Writing the above, I realize that I am a living, breathing puzzle. Some of my pieces have been chewed on. Some have completely disappeared.

It’s not all doom and gloom, though! Incomplete puzzles can be fixed. I don’t recommend this if you’re a perfectionist, but one way to solve the problem is to take a thin piece of cardboard (flattened cereal boxes work well), slide it underneath the puzzle, and trace the shape of the missing piece. Once that’s completed, and if you’re feeling especially brave, you can draw what was on that piece. You can color it in—with paint or colored pencils. You can make it whole again.

Which, incidentally, is precisely what I’m trying to do—be whole again. To heal.

Thank you, Dear Readers, for your continued well-wishes and encouragement. Your prayers, love, and light give me hope. Thank you, thank you, thank you.

 

With Love,

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

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

A New Home

We closed on our house!

It doesn’t quite feel like home yet, but, given some time, it will. We will fill these rooms with laughter and happy memories. We’ll add new colors. We’ll play music and celebrate the holidays with family and friends.

Owning a home, for me, is so much more than signing a stack of papers. It’s more than a financial commitment spanning a handful of decades. I realized, while watching the wild bunny in our backyard, that buying a house is an immense leap toward rebuilding my life.

backyard bunny 3.0
(Sorry that the quality of this picture isn’t better.)

Buying a home is another step toward recovery.

It’s an act of hope—hope that I will not relapse again, that the bone marrow transplant will be 100% successful, and, ultimately, hope that I will live long enough to leave my mark on this house.

I know. It sounds a bit pessimistic, but this is how you think after surviving cancer. You are constantly looking over your shoulder to see if the disease is following you. Amidst this worry, you learn how to breathe again. You learn how to live. Or, at least, you try to.

Thank you, Dear Readers, for all of your support and encouragement. Please continue to send light and love. Alderaan is back at the vet’s office. Poor little guy had a urinary tract blockage. We’re hoping that he’ll be discharged today.

 

With Love,

Laura