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

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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.

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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.

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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

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.

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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 Temporary Absence

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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

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

I Think This is What the Bards Might Have Called a ‘Quest’

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I am going to be honest with you—this past week sucked.

Monday: Spent living in fear that Wallace was going to die.

Tuesday Morning: Finding out that Wallace was not responding to the medications; his red blood cell counts were still dropping.

Tuesday Afternoon: Giving the “okay” to euthanize him. I watched Wallace pass out of this world. He was exhausted, just melting into the exam table. Leaving him behind in that room was by far one of the hardest things I have ever had to do.

Saturday: Picking up Wallace’s cremated remains from the veterinarian’s office.

This week has felt like someone was performing a bone marrow biopsy on my heart. That is, to say, it has hurt beyond description.

Losing my Wally has made me question a bunch of things in my life—this blog for instance. Am I doing a disservice to my fellow cancer and transplant survivors by constantly writing about gratitude and having a positive attitude? I was born a pessimist; a positive attitude is not my natural state of mind. Positive thinking, however, is far healthier than fear and/or worrying. I will admit to using this space as a means of forcing myself to change my perspective. I fear that by doing this, though, I have diminished my struggle as well as the struggle of my fellow survivors. The horror of cancer treatment doesn’t end with the last bag of chemo or the last radiation appointment. The torture doesn’t end…but I don’t write about it because a) I want to shield you from it, and b) if I dwell on it, I’ll be sucked into the fear of relapsing again. I’ve been using this blog like a life jacket–and although I’m treading as best as I can–keeping my head above the water has been difficult.

I’ve also been questioning my role in this life. Why the hell am I still alive? What am I here for? There has to be a reason why I keep outliving my various expiration dates (July 2010, February 2017). People are going to start thinking that I’m some sort of android if I keep surviving all of this s*&t.

Maybe this is just my overwhelming grief for Wallace talking, but for the longest time I thought my purpose was to be a writer. Nabbing a literary agent, however, has proven to be a thankless and utterly depressing task. So, I have to stop myself and ask, am I doing the right thing? Am I on the right path? And if not this, then what?

Dear Readers, I have no doubt that my good MRI results on Thursday/Friday are your thoughts and prayers working. Last year, on this very day, I was diagnosed with relapsed Acute Lymphoblastic Leukemia. I told you that I did not have the strength to fight cancer again. It was the truth. I didn’t have the strength. But YOU carried me through. Now I’m asking you to lend me some advice (in addition to continuing to send light and love).

How did you know what to do with your life?

How did you find your purpose?

When you’re grieving, how do you find peace?

As always, thank you for your support. Your comments and encouragement have meant the world to me.

 

With Love,

Laura

Mile Marker 44.8

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I have forgotten names, events, the order of things. I don’t believe, however, that I will ever forget this number: 44.8.

It started on Sunday morning, around 10:30am, when Seth woke up. He admitted to having left-sided chest pain. He admitted to having had it for three days. I’m not sure how I did it (because as much as I love him, he is a stubborn, stubborn man), but I made him go the Emergency Room to be checked out. He didn’t want me to go with him, because of my lack of an immune system, so I called his best friend. Thankfully, he was able to accompany Seth to the hospital.

Seth returned home by three. The ER doctors had checked his heart and he appeared to be okay. They gave him their blessing to drive me to Boston for a transplant check-up. The appointment was scheduled for Monday afternoon, but we had booked a hotel in case the weather proved to be cruddy.

We made it to the rest stop in Williston, Vermont. Seth was tired and wanted to take a quick 10-minute nap. He fell asleep immediately.

We crossed the state line into New Hampshire, and stopped once again at a rest stop. This time, Seth needed to walk around.

I noticed that he kept checking his pulse.

We pulled out of the rest stop. Within minutes, Seth began to panic. He pulled the car over, gasping, and saying that he couldn’t breathe, that he felt like he was going to pass out. He told me to call 9-1-1. So, I did.

The dispatcher was calm and reassuring. He asked me where we were; I told him we were parked next to mile marker 44.8 on US-89 South.

The fire department and the EMTs that came to rescue us were wonderful. They took Seth in an ambulance to Dartmouth-Hitchcock Medical Center (DHMC). Due to my seizure history, I am not allowed to drive. One of the EMTs was kind enough to drive me, in our car, to the hospital.

“It’s the hospital in the woods,” he said, turning down one of Dartmouth-Hitchcock’s tree-lined driveways.

Seth was admitted overnight so that his breathing and heart could be monitored. He told me to find a hotel, because, once again, someone with zero immunity should probably not spend the night in an ER waiting room. I found a hotel (that thankfully had a free shuttle service since I couldn’t find a taxi or an Uber). The shuttle took me to the hotel, where I was given the medical rate and a king-sized bed. I promptly piled the extra pillows on my right-hand side, where Seth would usually have slept.

I, a cancer survivor, have never been so scared in my life.

What if it really was his heart? What if he didn’t make it? These were the questions that haunted me. It was uncomfortable, to say the least, to be filling the chair beside the bed, instead of the bed itself. I am so accustomed to being the patient, the sick one, that I didn’t know what to do. I also realized that, as close as Seth and I are, I know very little about his family’s medical history or even his own. I also couldn’t name a single medication that he was on, other than Protonix. What kind of fiancée was I?

The next morning, the shuttle brought me back to the hospital. I found Seth in a small unit connected to the ER. To pass the time until his scheduled stress test, we watched television in his room. Seth was taken away for the stress test at 8:30am.

He aced it.

Seth’s heart, fortunately, is just fine. Neither of us could drive, though, so my father and brother came to pick us up. My brother drove us and our car home. We somehow managed to pass our father twice on the highway, even though he had left the hospital first. We flashed a notebook at him, with the word, “Ferry” scribbled in it. Our father doesn’t have a cellphone—and someone needed to drive my brother home after he delivered Seth and I to our front door—so this was the best mode of communication we had:

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Our father received the message, boarding the ferry soon after us.

Although Seth’s heart is in working order, he is being treated for pneumonia. How does living with a sick person work when you’re immunosuppressed? You wear a mask and wash your hands like it’s your job. Lysol wipes and spray are useful, too. I am dying to hug Seth, but it’ll have to wait until he’s healthy again.

I am going to marry this man, after he provides me with a detailed med list.

Thank you, Dear Readers, for your prayers. I hope you know that your kindness, love, and positive thoughts helped us through this harrowing experience.

 

With Love,

Laura

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

 

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.