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

 

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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

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

Cleaning Out the Clutter

At least once a week, I will see a meme or an article abstract on my Facebook newsfeed saying something to the effect of, “a cluttered home is indicative of a cluttered mind”. My mind, although scarred from cranial edema and a bit slower than it used to be, is constantly on the go. If I’m not mentally writing the next scene in my fiction manuscript, I’m composing an extensive “to-do” list. Or, I’m obsessing over something. So, yes, you could say that my mind is cluttered (or, at the very least, quite busy).

I didn’t realize how cluttered our apartment was, however, until we started packing our belongings up.

wall of boxes

I wasn’t going to write about our new house, Dear Readers, until everything was finalized; I was afraid of jinxing us. In any case, we’ve started packing as we hope to close the sale by the end of this month. Exciting? Absolutely. A lot of work? Oh my God, yes. So much work!

The two of us have somehow accumulated a lot of stuff. Most of my stuff isn’t even here at the apartment to pack up—it’s at my parents’ house.

My library? At my parents’ house.

My collectibles? At my parents’ house.

My favorite pieces of art? At my parents’ house.

Moving, I think, is ultimately an exercise in letting go. I’ve sorted through most of my clothes already (I still have one more plastic tub to go). Those clothing items that no longer fit—either my body or my personality—have been donated. Even if I love a particular dress or sweater, if I don’t feel comfortable wearing it in this present moment, it has to go.

Transitioning from this living space to the next one will be a process. I will keep you up-to-date, Dear Readers, on how closing (and then the actual moving) unfolds.

Please continue to send light and love. This week brings an oncology check-up in Burlington, VT. I usually get tremendously anxious about these appointments…and maybe that’s why my PTSD flashbacks have been on the rise lately…but it’ll be good to see the faces that took care of me during both my first and second cancer treatments. Gratitude, for your doctors and nurses, helps diminish the fear.

 

With Love,

Laura

Learn, Then Overcome.

Easter 4 2018

Did you know that a cat with a urinary tract infection (UTI) will associate the pain of the infection with his/her litter box, thus leading to undesirable behaviors (i.e. urinating outside of the box)? Treatment with certain steroids will also lead to urinating in inappropriate places.

Alderaan is currently doing this.

I think, though, that we all do it on some level—associate our personal pain with things/places/people/specific dates. Either consciously or subconsciously, we alter our behavior to avoid what we think will cause more pain. Which, in light of my life experiences, sounds a lot like anxiety. Someone once told me to imagine anxiety as living in a box. The more you try to avoid the things/people/places that make you feel anxious, the smaller your box becomes.

This year of post-transplant isolation has stuck me in a very small box (fortunately, there’s just enough room in here for a laptop and I’ve been writing my heart out).

When this year of saying “no” to visiting friends and family comes to an end, I’m going to be in a situation not at all unlike Aldie’s:

Aldie will have to relearn how to use the litter box (which is why Mommy and Daddy bought him a new one with special litter that apparently smells irresistible to cats), while I am going to have to learn how to trust my puny immune system.

I will have to overcome the social awkwardness that this year of isolation has impressed upon me. Similarly, we are doing everything we can to help Alderaan overcome his fears and return to health and appropriate behaviors.

September, after all, is coming.

crocus

Please, Dear Readers, continue to send light and love. For those of you who knew about my struggle with unexpected weight loss (a big no-no in transplant land), I can assure you that I put some pounds back on and am now at an acceptable and healthy weight. My doctors are pleased with my progress and we will be starting my pediatric shots in May!!! I know; it’s an odd thing to be excited about. But I am excited.

Thank you, thank you, thank you for sticking with me through this.

 

With Love,

Laura

Punxsutawney Phil is my B.F.F.

Sunshine pours through the windows. The sky is a brilliant shade of azure. This is the sort of afternoon wherein the promise of spring can be felt on the breeze. And, yet, here I am, just finishing a cup of hot cocoa. I’m securely wrapped up in blankets; feeling wintry. I think this is how the groundhog, Punxsutawney Phil, must feel every February when we wake him up. Disorientated. Disgruntled. No wonder why the little guy always seems to see his shadow—cursing us with yet another 6 weeks of winter.

I don’t think Phil is a spiteful groundhog. The poor guy is just trying to do his job.

I feel as though Phil and I in the same boat. Except, unlike Phil, my job isn’t to predict the weather. My job, in this current moment, is to heal. Today, healing looks like sitting on the couch and writing a blog post. Tomorrow, healing might consist of something completely different. The day after that—who knows?

magic

For now, though, I’m going to follow in Phil’s footsteps, curl up, and take a much-needed nap.

Please continue to send light and love, Dear Readers. It makes an enormous difference in our lives.

 

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

Love as a Purpose

vday-flowers-4-1708

First and foremost, Dear Readers, I would like to thank you for responding to last week’s post. Your condolences are appreciated. Your words of advice and encouragement to keep writing buoyed my spirits. Thank you, thank you, thank you.

After reading through the various comments, however, I began to notice some patterns—especially when discussing how to find one’s life purpose. God was mentioned quite a bit. As was love.

I don’t believe that these are two separate answers. I was raised in a Christian household. As such, one of the first things I learned was that “God is Love” …as is written in the first book of John. I’m not sure when or how I forgot that, but I needed all of you to remind me of it.

Loving self, loving others, love as life’s purpose—it requires work. When energy is a problem, I think that that type of love might be one of the first things to be kicked out. It’s probably one of the last things to be let back in, too.

To be clear, over this past year, I never stopped loving my fiancé, our respective families, or our friends. I never stopped loving my boys (Wally and Aldie). But, during my first cancer experience, I did stop loving myself. I was 23 years old and I absolutely hated God. Why was He allowing cancer to happen to me? Why was I suddenly living the life of Job? Fortunately, by the time I relapsed last year (2017), that anger had cooled. My faith had grown just enough to allow me to lean on God again—to ask for prayers and to believe that they would be heard.

Now, I am well-aware that there are other viewpoints, other belief systems out there. If you think what I’m posting today is a bunch of bull, that’s okay. You’re entitled to your opinions just as I am entitled to mine. I do not mean to offend anyone with this post. But, to tell the truth, I really like this idea of love being my purpose here on Earth.

I like the idea of taking care of others—for instance, cleaning out my closet and donating gently used clothes to those in need. I enjoy writing articles, pro bono, for non-profit organizations. Some of you mentioned that the hole Wally left in my heart won’t close up until I find another animal to love. Thankfully, I still have Wally’s little brother, Alderaan. Once we’re given the “okay” from my doctors to live in the same house again, I am sure his presence will help mend my broken heart. If it doesn’t, well, I guess I’ll just have to adopt a dog and give it a warm and loving home (Alderaan is a daddy’s boy after all. See evidence below).

There is peace, for me, in this mission to love—and I am so grateful, Dear Readers, that you brought it up.

Please continue to send light and love, Dear Readers. The road to recovery is still 7+ months long.

 

With Love,

Laura