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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

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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

Second Chances

I have noticed a trend in my movie and television-watching habits; I’ve been gravitating toward programs that focus on second chances.

Second chances to be an all-star athlete.

Second chances at love.

Second chances to simply be a decent human being.

If I were to analyze my current viewing preferences, I would self-diagnose myself as searching for hope. I would admit that my battery needs to be recharged. I need to be spoon-fed some good, old-fashioned positivity.

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So, Dear Readers, if you were in need of hope or inspiration, where would you look? Is there a movie or television show that you would watch? A book that you would read? A friend or family member that you would call? Would you travel somewhere? Is there a song that you would listen to over and over again?

Don’t be shy! I would sincerely appreciate suggestions!

Please continue to send light and love this way. It helps more than I could ever explain.

 

With Love,

Laura

Puppies and Patience

Luna has had her dinner and is now sleeping on the couch.

There are moments when she completely melts my heart—like chocolate chips in freshly baked cookies.

And, then, there are other times…that, let’s just say, she’s teaching me patience.

Even on the days when this copper-colored puppy tries to use me like a chew toy, I am grateful for her presence. She’s a tremendous amount of work, but don’t all good things require work?

nap

Unbeknownst to her (or maybe she can sense it), Luna has been saving me from anxious thoughts. I can’t ruminate on how painful this particular flare-up of Graft vs. Host Disease (GVHD) has been, when there’s a little dog that needs to be taken outside.

With her running around my ankles, I don’t have the time to bemoan (or concentrate on) the fact that my recovery plan is now slightly behind schedule.

Besides, there have been some positive developments on the GVHD front! Although I cannot lift my arms straight up over my head, the inflammation in my shoulder joints is now under control. The swelling in my left arm has gone down and I am much more mobile. My liver enzymes, while still not quite within normal range, are almost there. I’ll finish this week on 30mg of Prednisone and decrease the following week to 20mg. At that time, I should be back (or as close as I can currently get) to my old self.

I have never been a patient person, but some things—like worrying—have to wait when there’s a puppy around. Our Luna is as bright as a little moon, and she is illuminating our lives in ways that I couldn’t have predicted. She is both a challenge and a blessing.

Thank you, Dear Readers, for the encouragement, the light and the love. Please continue to send good vibes this way. It’s appreciated.

 

With Love,

Laura

Unpredictable

We have a puppy!

luna

Our puppy, Luna, is currently snuggled up on her daddy. Daddy is clearly her favorite person. And, why not? Mama (me) is a bit stand-offish. No puppy kisses here. Mama is constantly washing her hands. Mama doesn’t—because she’s just not that mobile—get down on the floor to play. Mama often wears gloves. Mama wears a mask whenever we go somewhere as a family (i.e. the vet’s office).

luna and daddy

So, why even bother getting a dog with all of these restrictions?

First, my transplant team in Boston said that I could.

Second, a little companion to take care of, and love, is perhaps one of the best forms of medicine out there.

Third, life is too short to wait for a better/perfect time. I’ll be brutally honest with you: I don’t know how much time I will have on this Earth. Neither do you. If you stop and think about it, do you know when your last day will be? Or how old you will have grown? Make the most out of your time here. Do those things that restore you spirits and make you smile. Breathe.

My grandmother was buried last week.

A former co-worker passed away just a few days ago.

A mentor, whom I am truly grateful for, faded away this weekend like an evening star.

What can we do when presented with such loss?

We can hold on tightly to the pleasant memories and the sage advice. We can live. We can open our hearts to love. We can take chances and put up with the nuisance of washing our hands every half hour. I refuse to live my life in fear. I refuse to miss out on happiness.

I can’t live with my Alderaan right now; Luna can’t fill the hole that Wallace left behind. Despite all of that, we can be a little family. We can learn from each other, we can laugh, we can howl when Daddy leaves for work (which is a habit I probably shouldn’t be encouraging). Sometimes, though, it’s one-hundred percent necessary to throw your head back and howl at the moon.

Please, Dear Readers, continue to send light and love. I am still coping with the symptoms of Graft vs. Host Disease. On a more positive note, my MRI’s from last week showed improvement. We’re back in Boston this week (to monitor the Graft vs. Host Disease). Hopefully, we can gain control of the GVHD soon.

Thank you, as always, for all of your kindness and encouragement.

 

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

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

 

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

We’ll Build Upward from There.

In my thirty-one years on this Earth, I have had to learn how to walk three times:

  1. As a toddler, just like everyone else.
  2. After a ten-day stay in the Intensive Care Unit (ICU) when I was 23 years old.
  3. And, when I was 30, after developing drop-foot during in-patient cancer treatment.
treatment with OR and brace
Relearning how to walk with a leg brace February/March 2017

Learning how to walk as an adult is downright painful. It’s also a slow process. I thought that I had successfully “gotten back on my feet” when I was able to ditch my cane, but after having an appointment with my neuro-oncologist in January of 2018, I realized that I needed help.

My doctor had me flex my foot into a ninety-degree angle. She then pushed down on my toes; I didn’t have the strength to resist her. I couldn’t keep my foot at the correct angle. My ankles weren’t strong enough. My balance was off. If I knelt down on the floor, I had to use something to pull myself up with. My doctor issued a referral for physical therapy. I let the referral sit on my desk from January to April.

Why? Because I didn’t want to be a burden. With my recent seizure history, I can’t drive. Due to the fact that I still don’t have a functioning immune system, I have to be very selective about who drives me (they must be 100% healthy). These parameters often result in me asking the same people, again and again, to take me places. In my mind, physical therapy was just another appointment that I would have to pester someone to take me to.

I don’t like asking for help—even when I need it.

So, I delayed setting up a physical therapy appointment…until the beginning of this month. My fiancé was urging me to take care of myself—and that includes rebuilding leg strength and balance.

I had my first session this past Friday. My therapy plan focuses first on stabilizing and strengthening my ankles. We’ll build upward from there. I am excited about it. My therapist is one of the kindest souls that I have ever met. You can tell she loves her job; best of all, her joy is contagious.

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

 

With Love,
Laura

There’s a Wallace in my Suitcase

In February and March of this year, I blogged about losing Wallace. His death was one of the lowest moments of my life—but you, Dear Readers, rescued me with both love and guidance. Many of you alluded to your own wounds and how God has provided for you. It is with these comments in mind, that I have tried to grow in my own faith.

I am excited to say that it’s working.

The first time I had cancer, I couldn’t go to church because I was often neutropenic. My immune system wasn’t functioning due to the chemotherapies I had to take. Any Sunday that I was actually home from treatment (in 2010, I practically lived at the American Cancer Society’s Hope Lodge in Burlington, VT), my dad and I would watch a religious television program together. He’d make me scrambled eggs for breakfast and I’d drown them in my mom’s delicious, canned, chili sauce. The memories I have of watching that program with my father are some of the happiest moments of my life.

Fast forward to today: I still can’t go to church because of my immune system, or rather, the lack thereof. In response—and after reading all of the advice that you gave to me—I trolled the interwebs and found the television program that my dad and I used to watch together. Episodes are posted on the ministry’s website and, best of all, they’re free to view. I started watching the sermons regularly. And, while I miss going to church, I feel as though I am starting to heal spiritually.

I think this practice of “going to church”—while sitting on the couch every Sunday—gave me the fortitude I needed to pack Wallace in my suitcase.

wally in my suitcase 2.0

This last week, I decided it was time to go through my closet once more. Even though I had removed quite a bit of clothing items, my closet was still full. Not all of my clothes were going to fit in my suitcase—so I decided to pare my wardrobe down again—especially since I planned on packing Wallace in there.

I know that sounds strange, but I think nestled between my clothes is the safest place for his box of ashes. This is not how I wanted to introduce Wally to his new home. This is not what I imagined this move to look like. But this is what it is: my beloved cat, in a wooden box, inside of my suitcase.

He’s been gone for two months now…and the wound is still raw.

I believe, though, that watching the televised sermons has had a positive impact on my outlook. My memory is not what it used to be—scarring on your brain from cranial edema will do that to you—and, so, I call it a “miracle” that I can remember the following memories at all. While surrounding Wallace’s box of ashes with my clothes, I began to remember how, whenever I used to pack my duffle bag to go somewhere, he would try to climb into it. He was such a big cat; it still amazes me that he could actually squeeze himself into my bag. My memories of opening my duffle bag and finding Wallace inside, lying on top of my clothes, made me smile. I can still remember how he used to look at me in those moments; it was as if he was saying, “bring me, too, Mom”.

So, in the next few weeks, I will be granting him that wish. I will be bringing him with me.

As always, thank you Dear Readers, for continuing to follow my journey through cancer treatment and now transplant recovery. Please continue to send light and good thoughts. I can’t begin to describe how much it means to me. Thank you.

 

With Love,

Laura