Words of Comfort, of Healing

 

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In response to my last blog post, someone I consider to be a dear friend kindly asked:

“…What is your favorite thing for people to say in support? Are there certain statements that help noticeably more than others? If all we have are words to help you I’d like to use the words that mean the most to you.”

I didn’t have an answer.

As a writer, I always have words—or, rather, the arrangement of words—on my mind. For instance, I spent a great deal of time trying to describe the color of the Sternbergia lutea flower for my novel-length manuscript, Greenwood. More recently, I’ve been searching for the right words to describe a fictional Norwegian Forest cat named, Birkir. He has an important role in my current writing project, Skraeling.

Despite this constant meditation on words and how best to use them in fiction, I have rarely thought about what words would be most comforting to me in uncertain or frightening situations. I couldn’t answer my friend’s question until this past Thursday morning.

Many of you may remember the notice I posted regarding the week of June 25th. Namely, I wrote that there wouldn’t be a new blog post that week due to having so many doctors’ appointments in Boston. Among those appointments was a surgical procedure—meant to diagnose the potential presence of a secondary cancer. I’ll spare you (and me) the details of “what it might have been” and “what they did to me”. Instead, I’ll just say that I received an email on Thursday morning announcing that the procedure results were in. The email also listed the results…and I couldn’t decipher them.

I did what anyone with a difficult medical history would do—I panicked. I cried. Yes, I have been a patient, in various capacities, since I was 23 years old. Although my sojourn through cancer and transplant-land has been long, it does not mean that I can speak the language of the medical field. Overwhelmed, I kept scrolling through the procedure results, desperately trying to translate them.

Finally, I worked up the nerve to call the doctor’s office.

No one picked up. I had to leave a message.

Surprisingly, while all of this was unfolding, something wonderful happened. I realized that I did have an answer to my friend’s question. As found in the New International Version of the Holy Bible: “For he will command his angels concerning you…” Psalm 91:11a.

Alderaan July 2018

I was spiraling in a panic attack, but I kept repeating the verse over and over again. Soon, there was nothing else in my mind. The Bible verse was in my blood, in my lungs. It was the ocher buoy keeping me afloat in a sea of anxiety.

When I finally received a call back from the doctor’s office, I was collected enough to hear the words, “very good results”.

And, then, I started crying again—big, grateful tears.

Fortunately, I don’t have a secondary cancer. I will have to be monitored for any changes, of course, but in this present moment, I have time to rest and heal. I also now have words to comfort me when old fears rise.

pink wildflowers

Please continue to send prayers, light and love, Dear Readers. They are both needed and very much appreciated. Thank you, thank you, thank you.

With Love,

Laura

 

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A Study

First, Dear Readers, thank you for your prayers, love, and light while I was in Boston.

view of Fenway

The check-up portion of my visit went fairly well, although I did learn that I may have to remain immunosuppressed (without a functioning immune system) for longer than the average bone marrow transplant recipient. Why? I’ve had Graft vs. Host Disease (GVHD) so many times that it might have to be considered a “chronic” disease instead of just an acute condition.

Currently, the GVHD that I have is managed with my anti-rejection drug, which essentially suppresses my immune system. I have also been on a steroid for a fair bit of time. Long-term steroid use, unfortunately, can lead to other health issues, such as bone density loss and for some individuals, muscle wasting. Due to these negative side-effects, in “chronic” cases of GVHD, the patient often participates in a clinical trial or study. I don’t know yet if I have “chronic” GVHD—but if I do, and if it is offered, I will consider participating in a study.

Studies can be frightening (no one wants to feel like a guinea pig in a science lab), but studies can also save lives—or, at the very least, improve the quality of life—mine and maybe someone else’s, too.

There was good news at this latest appointment, too! My liver enzymes were normal again! I also started my vaccinations. I know it sounds strange, but I was elated to finally receive my Tetanus shot. The timing was perfect; a day or two later, I sliced my thumb open on a can.

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Secondly, I wanted to thank you for your patience while I was away from my blog. I realize that this post, too, is short. My legs (not exactly sure why) have been causing me a great deal of pain. I feel as though physical pain drains creativity.

Healing, as we all know, takes time.

Once again, Dear Readers, thank you for all of your kind support. Please continue to send prayers, love, and light. I need them. Thank you, thank you, thank you.

 

With Love,

Laura

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

Graft vs. Host Disease

First, Dear Readers, I apologize for the tardiness of this post. I spent Monday at a follow-up appointment with my bone marrow transplant team in Boston.

As some of you already know, I’ve been experiencing shoulder and arm pain. I had originally thought that the pain was the result of relying on my arms to pull myself up the stairs in the new house (my legs are a bit wobbly still).

The source of the pain, however, is not as simple as overuse or a strained muscle.

I have graft vs. host disease (GVHD) again.

 

Just a little vocabulary review:

Graft – harvested and transplanted bone marrow from a donor

Host – me, my body.

 

Some of you may remember from an earlier post in 2018, that I’ve already experienced GVHD as an irritating skin rash. This time, GVHD is causing inflammation in my shoulder joints. Lab results also show elevated liver functions. So, yeah, it’s most likely in there, too.

The truth is, 70-75% of bone marrow transplant recipients experience GVHD on some level. Thankfully, it’s not all gloom and doom. GVHD means that my donor’s graft is capable of recognizing foreign substances. Right now, I—my organs, my joints—they’re foreign to her. She’s kicking my butt, too, which means if Acute Lymphoblastic Leukemia ever decides to pay me another unwanted visit, the graft will know exactly what to do with/to it.

Due to the fact that so many bone marrow transplant recipients develop GVHD, my doctors know precisely what to do to clear me of it. I will be taking a higher dose my anti-rejection medicine and adding a steroid to my daily regimen. Together, these two steps should tame the GVHD enough for me to gradually become comfortable again.

Please continue to send light and love, Dear Readers. I need them. Thank you, thank you, thank you.

 

With Love,

Laura

 

We’ll Build Upward from There.

In my thirty-one years on this Earth, I have had to learn how to walk three times:

  1. As a toddler, just like everyone else.
  2. After a ten-day stay in the Intensive Care Unit (ICU) when I was 23 years old.
  3. And, when I was 30, after developing drop-foot during in-patient cancer treatment.
treatment with OR and brace
Relearning how to walk with a leg brace February/March 2017

Learning how to walk as an adult is downright painful. It’s also a slow process. I thought that I had successfully “gotten back on my feet” when I was able to ditch my cane, but after having an appointment with my neuro-oncologist in January of 2018, I realized that I needed help.

My doctor had me flex my foot into a ninety-degree angle. She then pushed down on my toes; I didn’t have the strength to resist her. I couldn’t keep my foot at the correct angle. My ankles weren’t strong enough. My balance was off. If I knelt down on the floor, I had to use something to pull myself up with. My doctor issued a referral for physical therapy. I let the referral sit on my desk from January to April.

Why? Because I didn’t want to be a burden. With my recent seizure history, I can’t drive. Due to the fact that I still don’t have a functioning immune system, I have to be very selective about who drives me (they must be 100% healthy). These parameters often result in me asking the same people, again and again, to take me places. In my mind, physical therapy was just another appointment that I would have to pester someone to take me to.

I don’t like asking for help—even when I need it.

So, I delayed setting up a physical therapy appointment…until the beginning of this month. My fiancé was urging me to take care of myself—and that includes rebuilding leg strength and balance.

I had my first session this past Friday. My therapy plan focuses first on stabilizing and strengthening my ankles. We’ll build upward from there. I am excited about it. My therapist is one of the kindest souls that I have ever met. You can tell she loves her job; best of all, her joy is contagious.

Please, Dear Readers, continue to send light and love. Thank you, thank you, thank you.

 

With Love,
Laura

Learn, Then Overcome.

Easter 4 2018

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

Alderaan is currently doing this.

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

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

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

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

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

September, after all, is coming.

crocus

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

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

 

With Love,

Laura

Punxsutawney Phil is my B.F.F.

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

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

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

magic

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

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

 

With Love,

Laura

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

A New Year, Another Chance

 

2017 is now gone.

2018 has arrived.

I would like to think that this new year will be better than the last. I would like to think that it’s a fresh start. My gut, however, tells me that neither positive change nor happiness magically arrive when the calendar starts over.

Happiness requires perseverance.

Positive change requires work.

Both require deliberate action.

For instance, and I doubt this will be much of a surprise to anyone, but I want to be healthy in 2018. Most of that is beyond my control—since the cancer I keep developing is the result of faulty genetics. I’ve had a lot of chemotherapy and radiation over the past seven years. Neither of these treatments are consequence-free. Late side-effects continue to pop up.

There are, however, some things that I can do to encourage healing. Now that I am 100 days post-transplant, I can start eating fresh fruits and vegetables again. I can reduce the amount of processed foods that I eat as well as limit my sugar intake. I can attempt to better manage my stress levels through reflexology, a modified yoga practice, and writing. I can experiment with essential oils via the aromatherapy necklaces that my brother gave me for Christmas. I can establish a consistent sleep schedule. I can go to physical therapy and relearn how to walk correctly (bye-bye cane! It’s been real.).

aromatherapy necklace

Will any of these changes single-handedly make my 2018 a year of good health? The pessimist in me says, “no”. The realist in me says, “just try it. It can’t hurt”.

I wish for you, Dear Readers, a wonderful 2018. I hope you make your resolutions come true. Please keep the light and prayers coming this way (recovery from the transplant is a long, long road). As always, thank you for your support. You have been our strength.

 

With Love,

Laura

Christmas Day

 

cuddling

Above: Wallace and Alderaan caught cuddling. 

 

Let me preface this by saying that I’m really not complaining; I love winter. I am currently wrapped up in two blankets—and contemplating dragging a third one onto my lap. Or, I might just warm up with a cup of hot cocoa (topped off with whipped cream, because, why not?).

It amazes me how quickly Christmas seemed to arrive and, then, pass by. I can’t help but wonder what happened to the beginning of December. Where did it go? What was I doing? I expect this week to be just as hectic as last week was. And, that’s why, Dear Readers, I am going to leave sticky notes around the apartment to remind myself to:

breathe;

smile;

laugh;

and hold happy memories close.

Even if you don’t celebrate Christmas, I hope you are able to enjoy the rest of December. I hope you’re able to frolic in the snow. I hope you’re able to stay warm.

We’re back in Boston late this week for another check-up. Please, Dear Readers, continue to send light and love. Your kind thoughts and prayers make a difference.

 

With Love,

Laura