Words of Comfort, of Healing

 

This slideshow requires JavaScript.

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

 

Advertisements

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

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’

in memory 2.0

 

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

visitor badge

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:

20180123_133526

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

22859890_10101033950881389_3051161746271663854_o

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.

Protective Service, Courtesy of Wallace and Alderaan

Selfie with Aldie

Well, Dear Readers, it’s been a little while since I’ve posted anything here.

I have an excuse: Radiation Therapy.

I am grateful for the nine, exceedingly quick sessions of radiation—not only because I am hoping that is has killed what remains of the tumor in my spinal cord, but because it has given me some peace of mind regarding the radiation scheduled to take place in Boston. Although there is a huge difference between localized radiation and total body irradiation (which I will receive in Boston), I feel a little more prepared now. I know what the machine sounds like. I know what radiation itself feels like.

Am I still frightened? Yes. Very much so.

As the days march onward and September 15th (my new admission date) creeps ever closer, it gets increasingly difficult to sleep. I have been waking up at ridiculous hours—3am, 4am. 5am is now sleeping in for me.

Wallace

I spent this past Saturday night at my parents’ house. I think my boys—Wallace the Wonderful and Alderaan—could tell that something was on my mind. Around 3 am, Aldie claimed the foot of the bed. Around 5:20am, Wallace jumped up by my pillow. My boys surrounded me, as if guarding me from all the nightmares that regularly visit me.

Naptime

Why is this important? Cats jump up on beds all of the time; why would this night be any different than other nights? As the date of the transplant approaches, I realize that I still need strength. I need to know that protection is nearby. I need to be reminded that support is easily found…if only one looks for it.

Dear Readers, please keep my family, Seth and I in your thoughts and prayers. Please keep the light and love coming. This has not been an easy journey nor has it been short. Please hang in there with me. Thank you, thank you, thank you.

Cancer Experience #2 – Almost Finished

Montreal just weeks before diagnosis
Seth and I in Montreal, just weeks before my diagnosis

I was going to share an update with you about where I am now in the treatment process. As I wrote that post, however, it turned into a piece about fear…and I want to write more uplifting blogposts than that. We are all afraid—of something—at some point in our lives. I used to spend every August dreading the Fall because the change in seasons meant another year of school was about to start; I was a really good student, but I hated school. Autumn is now my favorite season and while I am not sure how that reversal took place, I wonder if similar magic will transform this situation, too.

My bone marrow transplant is currently scheduled for September 8th. That same day, a Hickman line will be surgically implanted in my chest. I understand why this must be done (the care team needs as much access to my veins as possible and with three exterior lines a Hickman is ideal). To be honest, I want the Hickman about as much as I wanted the Ommaya Reservoir—which is to say, not at all. I don’t want tubes hanging out of my chest again; the first time I had cancer I had an Ash-split with 2 lines. I hated every moment with that thing. I don’t expect the Hickman to be any better. Maybe I am just being a negative Nelly, and I may come to appreciate the Hickman as I did the Ommaya (the Ommaya did, after all, save me from bi-weekly lumbar punctures). The Hickman will be the vehicle through which my donor’s marrow will arrive. It’s how I will get food should my appetite fail. It will deliver lifesaving chemotherapy.

20170226_103146
A few days after my diagnosis

With all that said, the Ommaya and Methotrexate sensitivity caused cerebral edema. Combined with chemotherapy, so much about me has changed over the course of this journey, not by choice, but because whole swathes of my brain are still water logged. My thought-processes (especially when it comes to sequencing tasks) are about as steady as my walking—which, without the use of my leg brace and cane, is tremendously unsteady. Edema is something that may or may not improve with time. I am missing so many memories as a result of the condition and am having difficulty making new ones.

I am finding that my mental capabilities improve with reading. If I can relax, my head works better. If I can get a good night’s sleep, my thoughts are even clearer. But that’s a “big if”, though, because PTSD (the ever-present reminder of my first cancer experience and the infection that landed me in the ICU for 10 days) wakes me up most nights.

treatment with OR and brace
In the hospital, with the Ommaya Reservoir (in my head) and a borrowed leg brace.

As I have confessed to both Seth and to my closest friend, I would quit this treatment if I could. I would be dead, though, in just a matter of months—because Acute Lymphoblastic Leukemia is not a cancer you can live with. It is an aggressive SOB.

So, while I am afraid of what lies in store for me in Boston, I will finish this treatment plan.

I want to live.

I want to marry Seth.

I want my own house, a dog and more cats (I think both Wallace and Aldie need a little sister).

I want goats.

I want to be strong enough to walk on my own.

I was terrible at it, but I want to ride horses again.

I have paintings to start and novels to write.

There is a stack of books on my nightstand that I want to read.

There are places I would like to go.

The ironic part about all of this, is that when I was in high school, and then in college, I wanted to go to graduate school in Boston. Before I fell in love with the Gaslight Anthem, Augustana’s “Boston” was my favorite song. Sometimes I think Boston was always in the cards for me, but I didn’t know it would be like this.

today
Me, today, August 6th, 2017

On the bright side, I will probably have a great view of the city from my hospital room window. I will be listening closely to the accents the of the native Bostonians in my care team, so as to inform the writing project I have recently resurrected (the main character is from one of Boston’s suburbs). And, once I have had the rest of my treatment—full body radiation twice a day as well as an inordinate amount of chemotherapy—and my year of mask and glove-wearing isolation is completed, I can rest in the knowledge that this second cancer journey has come to an end.

Thank you, to all of you, for the encouragement and prayers. I couldn’t do this without your positive energy. Please keep the light and good thoughts coming.