This is What They Call a Birthday

first birthday cake

In the world of Bone Marrow Transplants, the anniversary of your transplant is considered to be your “New Birthday”. I just turned “One”.

I think I’m supposed to feel elated.

Or proud.

The truth is, all I feel and see are confused flashes of that hospital room.

I can’t remember much of my time as an inpatient. Preparation for a transplant is both physically and mentally demanding. The chemotherapy that I was given in Boston—just days before the actual transplant—was harsher than all of the chemotherapy that I received during cancer treatment. The Total Body Irradiation completely drained me.

I was also higher than a kite on pain meds, dreaming about being trapped in a basement…and something about cave trolls. What I do seem to remember are the challenging moments. My mind has a penchant for that. Don’t ask me to remember happy milestones or joy. I’m not wired to recall pleasant memories, although I wish that I was.

Breathing would be a lot easier if I could focus on positive details such as the pigeon that sat, every day, on my windowsill—as if it were watching over me. Was it an angel? Or just another city bird? I remember naming it, “Bird Butt”, because it always had its tail feathers pressed against my window. I couldn’t take a decent picture of it with my cellphone…so…if it was an angel, I can’t imagine that it was too impressed by me or my “creative” naming abilities.

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So much has happened in the year between naming “Bird Butt” and the present day.

The field I admire—the one across the road—has been turned into square bales. I watched a farmer mow the field and bail it. I began to appreciate him as much as I did the field. He walked with a cane and, yet, somehow was able to climb up and down from the tractor’s seat. As someone that once relied on a cane to walk, I know that this was no easy task. This man was determined. A hard-worker. Someone to respect, to emulate.

Do I miss my former view? Yes.

The field, though, has not stopped giving me beautiful moments to ponder. Do I love what it has given me now, even more? The answer: a resounding yes!

Whenever the shadows are long, there is a rather large cat that prowls across the field. It has probably been doing this for longer than we’ve lived here—the tall grass kept it hidden from sight. Now, however, the feline is visible. I can’t tell if s/he wears dark stripes like my Wallace did, or if its coat is entirely sable in color. Either way, its presence gives me joy. Hope. Dare I say, happiness?

cat in the field 2.0

So, yes, I ate cake on my “First Birthday”. My fiancé bought it for me and it was rather tasty. There weren’t any candles to blow out, but I made a few wishes anyways.

I wished to become a positive-thinker (I would like to believe that I’ve made some progress in that department).

I wished to help others whenever possible.

And, finally, I wished to stockpile pleasant memories—and actually remember them.

Thank you, Dear Readers, for all of your prayers, kind words, and love over this past year. Please continue to send light. The recovery process has only just begun. I have three to six more months on steroids and my anti-rejection medication. They’re both immunosuppressants, so I will still have to be cautious about what I expose myself to.

The bright side? I’m “One” now…my legs are wobbly…but I’m starting to take my first steps toward health.

 

With Love & Gratitude,

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

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

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

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

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

Three

welcome home from bmt

Dear Readers:

It’s been three weeks and three days since I’ve turned my laptop on to write.
The pause in creativity has left me with a multitude of subjects on which to write. I could recount the hazy memories I do have of my bone marrow transplant—the reason for my 3-week hiatus. I could describe how I was so sick during the procedure and, so high on Dilaudid, that my nurses asked Seth to stay overnight, to help calm me down and, ultimately, to help take care of me.
I am so blessed to call this man mine.

Would I love Seth even if he weren’t a medical professional capable of understanding what my medical teams say during my many appointments? Absolutely. He is thoughtful and intelligent and a huge pain in the butt that makes me smile daily.

Tuesday, October 10th, 2017, was our first full day home. And what did he do? Seth went grocery shopping to make sure I had plenty to eat. Later, he let me bounce blog ideas off of him.

His suggestion? To write about “strength”.

This blog opened in January with the intention of exploring strength—what it means, what it feels like, what it looks like. I wrote, again and again, how I didn’t think I had enough of it to weather this cancer relapse. Seth and I disagree on this point, but I still feel as though I have never been strong and that I could use more strength. I have a year of being sequestered ahead of me, as my new immune system matures and my body recovers from high doses of chemotherapy and full-body radiation. I will spend the next year praying that my donor’s cells and my own get along. I have follow-up appointments to attend, a Hickman tunneled catheter to have removed (hopefully later this week!), and eyelashes and hair to regrow.

The truth is, I wouldn’t have gotten through the last three weeks on my own. I was blessed with parents, a brother, and friends that cleaned our apartment so I would have a safe environment to return to after the bone marrow transplant. I was showered with YOUR love and prayers. Throughout my procedure, I had my soulmate holding my hand.

Strength, as the last three weeks and three days have proven, is something to be carefully cultivated. It has many different sources, it can be replenished at any time—if only one asks for light and love when the shadows seemingly grow long.

Please continue sending good thoughts our way. They healing process has only really just begun and we need all the strength and courage we can get. Thank you, thank you, thank you.

With Love,
Laura