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Scatterbrained, but Thankful

wallace ornament

It’s difficult concentrating this morning. I’m not usually so scatterbrained, but here I am, on my third cup of coffee and still struggling to come up with a subject for this blog post.

I blame my distractibility on how excited I am about several things:

  • I had my first slice of take-out pizza this past Wednesday (and it was absolutely delicious).
  • In less than 30 days, I’ll be able to eat fresh food again (salads, grapes, apples with peanut butter, oh my!).
  • I engaged in risky behavior and went to a bookstore (I’m supposed to limit my contact with the public, and had to wear a mask and gloves to stay as safe as possible from unwanted germs. It was my first-time shopping since September.).
  • I summoned the courage to ask a friend about training therapy dogs (a future goal of mine).
  • Seth and I visited my family and our boys (Wallace the Wonderful and Alderaan)

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You don’t realize how much you miss places, people, food, and cats—until they’re temporarily taken away from you. If I have learned anything from this particular cancer journey, it’s to try to never take life for granted. Try not to obsess and/or worry about circumstances you can’t control. Just breathe. Just love. Savor those special moments with your loved ones.

Thank you, Dear Readers, for continuing to send light and love. You have given me the strength to endure this treatment. I wouldn’t have been able to do it without you.

 

With Love,

Laura

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Seized

leia and r2d2

Photo Caption: From the creative LJ (Princess Leia and R2D2 in the basket of a hot air balloon).

 

I had two seizures this past week.

One took place in our apartment, on the couch. The other took place in the Emergency Room.

I can’t tell you what the seizures felt like…or what exactly happened…because I can’t remember them at all. I know that I bit my tongue (because it hurts). I know I foamed at the mouth (because Seth witnessed it and told me about it). I know I had an MRI of my head, but, again, I have no memory of it.

The timeline of what happened and when isn’t clear to me. I can only vaguely recall the back of the ambulance and its flashing lights illuminating the front of our apartment building. I remember my parents and two of my friends (LJ and Sarah) visiting me in the hospital. Ironically, I was placed in the same room that most of my inpatient cancer treatment was administered in last winter.

I’m a bit on edge—afraid that, even though I am now on anti-seizure medication, it’s only a matter of time before I seize again. The cause of the seizures? My anti-rejection medication. The same pills that have facilitated the engraftment of my donor’s bone marrow—and thus saved my life—have shaken me to my core.

I feel as though I have forgotten something vital…that I’ve left something unfinished.

My sense of time has been affected, too. I feel as though time is slipping through my fingers, faster than ever, and I can’t grab onto it. I can’t make it pause. I want it to slow down—if only for a moment—so I can catch my breath, so I can decide what to do next. I think I expected the transplant process to grant me some insight (i.e. what to do for a career when I’m given the okay to return to work and/or if I should go to graduate school). I’m still waiting for a nudge in the right direction.

Life is short and I want to make sure that mine counts; that I am of help to others, that I leave this world a better place than I found it.

We return to Boston this coming week for another check-up. Please, Dear Readers, continue to send love and light our way. You have been our strength throughout this process. We’d be lost without you.

 

With Love,

Laura

 

Procrastination: Part of a Well-Balanced Life?

I try not to procrastinate when it comes to writing my blog posts. I like to write them at least a few days in advance:

a) To give myself some time to edit them, and/or
b) To compose completely new posts because I am immensely picky when it comes to my writing.

Sometimes, though, writing in advance simply doesn’t happen. Sometimes, like this morning (Sunday morning to be exact), I will wake up at 2am and realize I haven’t written anything. Or, worse, I realize I don’t have any ideas for a post.

I am not one of those writers that can easily force creativity.

I have yet to come up with a formula for making blog magic happen.

I thought drinking my coffee out of Seth’s Harry Potter mug might help. I turned on the Christmas tree. I looked longingly out of the porch window for the snow showers that my phone promised as being inevitable. Still…nothing (on either the idea or the snow front).

snowflake ornament

So, I did the only logical thing I could think of: I procrastinated some more and went for a walk. I tried to keep my eyes and ears open for blog ideas. Procrastination did two things:

1. It gave me the opportunity to breathe the crisp, almost-winter air.
2. It cleared my anxious mind.

While I am not proposing that we procrastinate about everything in our lives, it may be beneficial (even healthy) to occasionally leave the rat race, to take a walk outside, and to just breathe.

Thank you, Dear Readers, for the ongoing support and encouragement. You have been a source of light and strength to me. We return to Boston for a check-up this coming Wednesday. I will do my best to keep you up-to-date on what happens there.

With Love,
Laura

Choosing Gratitude

maple leaves

Dear Readers,

My Facebook newsfeed is full of Thanksgiving and gratitude posts and quotes—for which I am thankful. It’s a nice change to see positive messages. It has buoyed my spirits and reaffirmed my own desire to practice gratitude on a daily basis.

A confession? Even though I have so, so much to be grateful for, gratitude is not always an easy attitude for me to maintain. It takes energy. Persistence. And, for those of us that have been life-long pessimists (or are just plain exhausted), it requires a deliberate change in thinking. In short, gratitude requires work.

Why am I writing this? Because as important as gratitude is, I also think it’s equally important to admit that we’re all human. We’re not perfect. Sometimes, we have bad days, and get upset by anything and everything that doesn’t go our way. It’s in these moments that we have a choice to make: to allow ourselves to be overtaken by negativity or to refocus—and recommit—to a life of gratitude.

For me, Thanksgiving is the perfect opportunity to look on the bright side. Seth will be cooking our Thanksgiving Day meal—which means it’s going to taste amazing (for those of you who don’t know, he’s a gifted cook). I expect to have a full belly and delicious left-overs for days. We’ll also decorate for Christmas; a holiday that never fails to fill me with hope and light.

It’s easier to be grateful with good food and the love of your life nearby.

So, the next time I struggle with gratitude, I’ll replay the sights and the smells of the holiday season in my mind. I’ll remind myself to cling to good memories instead of worrying about the uncertainty of the future (which is often what impinges my ability to be grateful).

I would like to thank you, Dear Readers, for sticking with me through the rollercoaster ride that has been 2017. Your support has meant everything to me. Thank you, thank you, thank you.

With Love,
Laura

Why Pieridae?

moth bw

Dear Readers,

I didn’t have an appointment in Boston this week, so I don’t have any cancer/post-transplant news to share with you. Other than spilling my Magnesium Oxide all over the floor (thank God it wasn’t my anti-rejection drug), my week has been quiet. It’s given me the opportunity to diversify my daily routine. For instance, in an effort to build some stamina, I’ve started taking walks outdoors. It’s cold and wonderful and I can do it mask-free—like a normal person! As long as I don’t encounter construction or someone doing yardwork, I’m golden. Safe.

This week, then, is the perfect occasion to share the post that I had planned to write immediately after launching my blog. As most of you know, my life took a detour and the post was never written, never shared.

In the not-so distant past, I received several inquiries about the title, “Of Pieridae & Perras”. I chose Pieridae for a couple of reasons:

a) I adore alliteration. I use it in all of my writings—articles, fiction, my blog. It’s magic to me.

b) Pieridae refers to a family of (think scientific ordering of species) butterflies. What better word to accompany the opening proverb, “Just when the caterpillar thought the world was over, it became a butterfly.”?

c) I’m not a caterpillar or a butterfly, of course, but I can relate to feeling lost in the darkness of a cocoon. I can relate to biding my time, waiting for a transformation to occur. It is, for these reasons, that the cake celebrating the end of my cancer treatment (the first time) was embellished with the above quote.

cake with quote

We all go through dark, difficult periods in life. I have found that when these times finally come to an end we have a choice: we can regroup, recreate and fly, or we can remain immobile in the remnants of our cocoons. Flying is not an easy skill to master. I’m still trying to figure out just how to do it. Writing blogposts every week has helped. It’s helped me to connect with others. It’s been an outlet. It’s nudged me toward more positive-thinking.

When my days have been particularly rough, it’s given me a purpose.

We head back to Boston next week for another check-up. Please continue to send light and love. Your encouragement has kept us going. Thank you, thank you, thank you.

With Love,
Laura

So Much to Be Thankful For

autumn leaves

I had another checkup in Boston this past week.

As some of you may already know, one of the changes that occurs after a bone marrow transplant is that the donor’s DNA and the host’s DNA (mine) combine. This combination of DNA is called a chimerism and can be determined by simple blood tests. Eventually, the donor’s DNA takes over. At this point in my recovery, the doctors were expecting that only 90% of my DNA would be my donor’s.

The results of my chimerism test, however, showed that all of my major cell lines have been completely taken over (100%) by my donor’s graft.

I couldn’t have asked for better results! This is yet another indication that the transplant has worked. While I still have a long recovery ahead of me, there is so much to be grateful for—including your well-wishes and prayers. I couldn’t have done this without your support. Please keep the love and light coming. Thank you, thank you, thank you.

With Love,
Laura

It Goes On

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In August, I had a series of MRI’s done to examine my head (to evaluate the state of my edema) and my spine (to check up on the tumor). I never received the results of all that imaging until this past week when, at a neuro-oncology appointment, I was able to view the images for myself.

What were the results?

The images of my spine were devoid of disease.

Just as significant, was the fact that all of the fluid (edema) that had been on my brain in May had resolved itself. The only flaw on the image was the small, circular scar from the Ommaya Reservoir (formerly known as my Unicorn Horn)—and, the scar, other than being visible on my head, is not going to hurt anything.

Overall, it was a positive appointment. I left feeling buoyant. Grateful. Life is slowly taking on some semblance of its former self.

This week’s appointment in Boston went just as well. My blood counts and immune system are developing nicely. I am inching ever closer to the important 100-day mark (when I can eat restaurant pizza again!). I was saddened to learn that the hair I’ve been growing on my currently bald head probably won’t stay, but over the last decade, I’ve been bald quite a few times. It’s something that you learn to live with.

You also learn to live with the fear of recurrence, of developing another malignancy, of forging a ‘happily ever after’ only to have it snatched away. While I think it’s important to acknowledge fear, I think it’s equally important to go on living in spite of it.

To eat the Halloween candy before the holiday.

To be awed by the sunrise.

To find solace in a phone conversation with a good friend.

As always, thank you for the continued prayers and good thoughts. The bone marrow transplant is over, but I still have a year of seclusion and check-ups ahead of me. Please keep the love and light coming. Thank you, thank you, thank you.

Finding Magic

dried flowers

Dear Readers,

I have a rash.

It’s not just any rash; it’s the outward manifestation of Graft vs. Host Disease (GVHD). Sounds serious, right? It can be, but I learned at my second check-up in Boston that a mild case of GVHD is not only expected, but desirable. GVHD demonstrates that, by fighting my immune system, my donor’s immune system is working. Should my body ever produce Leukemia cells again, the new immune system will be ready and able to destroy them.

It’s unpleasant, but GVHD is proof that the bone marrow transplant worked.

When I am not focused on how itchy I am, I have been pondering the question, “what do you do for fun?”. I have had a number of loved ones ask this question recently. In 2011, a fellow cancer patient, sitting across from me in the infusion bay, asked me about it. I didn’t have an answer then and I might not have one now.

I spend my time napping and doing the few household chores that I am still allowed to help with.

I’ve been dabbling with restorative yoga again.

I’ve also been watching Christmas movies.

I swear I’m not trying to rush the season—but these movies make me smile. I try to find the corniest ones imaginable, simply because they make me giggle. They remind me of the magic of December—and I think it’s important on dreary days (especially) to find and feel magic.

little things desk

What do you do for fun?

As difficult as the question is for me to answer, it’s one I need to find an answer to. Fun, after all, is how our spirits heal.

Thank you, Dear Readers, for all of your support and love. I can’t begin to express just how much it means to me. Thank you, thank you, thank you.

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

Facing Fear

Dear Readers,

We leave for Boston this week.

My anxiety about the bone marrow transplant comes in waves. Sometimes I am perfectly calm, relieved even, that the end of this cancer is finally within sight. Other times, I feel as though I am hanging on to my sanity by a mere thread. This treatment will not be easy. I am afraid. In the moments when the fear is too much, I remember my father’s recent words, “you’ve been through worse”.

It’s the truth.

I have been through worse. In July 2010, I almost died from a mysterious infection. I spent 10 days in the ICU and woke up on a ventilator, with liver failure, receiving dialysis. Additionally, the neurosurgeries of this past spring were certainly not a walk in the park. Compared to all of these emergent situations, what is one month at a prestigious cancer institute receiving a bone marrow transplant that could cure me of ALL forever? Is fear really a warranted reaction? Or am I exhausting myself before even arriving on campus?

I can’t take credit for surviving either ICU or my neurosurgeries. There were prayers being said for me during both of these crises and, without those positive thoughts and vibes, I’m not sure I’d still be here.

The treatment plan, for while I am in Boston goes as thus:
9/15 – Admission and Hickman placement
9/16 – Chemotherapy
9/17 – Chemotherapy
9/18 – Total Body Irradiation (TBI) – two times a day, 20 minutes each time
9/19 – TBI
9/20 – TBI
9/21 – Actual transplant

Designed to wipe out my immune system, I expect treatment to be exhausting. I expect treatment to make me nauseous and uncomfortable. I fully expect to be in the hospital for at least a month, or until my new immune system rallies.

Daisy grow kit

A couple of weeks ago, I received a basket with a variety of goodies in it—including the above daisy growing kit. For now, until I am cleared to garden again, the kit will remain as it is—unused but full of potential beauty—just like the future.

Please continue to send light and love our way. We can’t do this without you.

With Love,
Laura & Seth & Co.