I Promise to Play Laser Pointer

The wind was fierce—and cold—the morning that I wrote this blog post. It shook the wind chimes hanging on the front porch; their melody not the slow and calming tune that I had grown accustomed to. Instead, it was rushed.

Still beautiful, but rushed.

In many ways, I have lived my life this way—rushed, and rushing myself. Alderaan is helping me to break this habit.

My fiancé and I didn’t have Alderaan (Aldie) for a great length of time before I relapsed with Acute Lymphoblastic Leukemia. I knew that cancer treatment would impair my immune system, so I sent both of our cats to my parents’ house where they would be cared for (and downright spoiled). We’ve been separated from Alderaan for so long that it’s almost as though we are welcoming a new cat into our lives.

For instance, who knew that he would turn out to be an actor? He rolls—yes, rolls—down the stairs, just to antagonize Luna (the puppy). Trust me, this is an act. He may have short, little legs, but he’s perfectly capable of walking down the stairs. I’ve seen him do it at least a dozen times.

Aldie behind the curtain
Behind the curtain, preparing for the next act.

Another revelation: Aldie is an early bird. He wants to be fed breakfast, promptly, at 5:30am. Then, once his stomach settles, he wants someone to play laser pointer with him. I’m usually quite busy in the morning—especially on mornings that I have appointments to prepare for—but there’s this quiet voice that tells me to slow down, to cherish time spent with Aldie. For this one moment, the most important thing in my life, is watching Alderaan chase a red dot across the floor.

Aldie spare bedroom
Another act: pretending to sleep

It’s not going to be this way forever, so I have decided to enjoy the little moments whenever I can.

My fiancé and I recently attended a memorial service, “Celebrating the Life of Douglas R. Skopp, Ph.D.”. We both deeply respected (and continue to respect) Dr. Skopp. We miss him. There were a variety of speakers at the service: Dr. Skopp’s colleagues, members of the community, former students. Some of the words that were used to describe Dr. Skopp were:

Valiant.

Noble.

Compassionate.

Extraordinary.

Some of the speakers expressed the desire to have just one more cup of coffee, or one more dinner with him—and, it hit me then, that my fiancé and I were quite fortunate to have had that very opportunity in September of 2017.

Right before my bone marrow transplant, we had had the privilege of having dinner with Dr. Skopp and his wife, Evelyne. It was a wonderful, inspirational evening—and exactly what I needed before shipping off to Boston for the transplant.

Dr. Skopp had been a mentor and a source of light for me since the first time I had had cancer in 2010. He mentioned me in the “Afterword and Acknowledgements” of his novel, Shadows Walking. To paraphrase, he felt that I was teaching others how to appreciate every day.

He was wrong about that; he was the one that taught me how precious every moment was. I was young and I was angry the first time I had cancer; his positive outlook turned my negative one around on countless occasions. He gave me hope. He encouraged me to keep focusing on healing, to keep learning, to keep living. I wish I had had the foresight to say ‘thank you’ before it was too late.

Perhaps the most significant moment at the memorial, for me, was when one of the speakers relayed some of the advice that Dr. Skopp had once given to him. It was, as follows:

“The most important promises to keep, are the ones [that] you make to yourself”.

This advice has stayed with me, every day, since the memorial. I ask myself, what promises have I made to me? Have I made any of them a priority?

The answer came to me with the click and the tap of a keyboard; continuing to write and, one day, publish some of my fiction—these are promises I have made to myself. The service rekindled my commitment to these promises.

Another important promise: to play laser pointer. Although it primarily benefits Alderaan, promising to play laser pointer is also a promise to me. It’s a promise to slow down, live this life, and love its little moments.

As always, Dear Readers, thank you for your prayers, your love, and your light. It has carried me through so much this past year. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

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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

There’s a Wallace in my Suitcase

In February and March of this year, I blogged about losing Wallace. His death was one of the lowest moments of my life—but you, Dear Readers, rescued me with both love and guidance. Many of you alluded to your own wounds and how God has provided for you. It is with these comments in mind, that I have tried to grow in my own faith.

I am excited to say that it’s working.

The first time I had cancer, I couldn’t go to church because I was often neutropenic. My immune system wasn’t functioning due to the chemotherapies I had to take. Any Sunday that I was actually home from treatment (in 2010, I practically lived at the American Cancer Society’s Hope Lodge in Burlington, VT), my dad and I would watch a religious television program together. He’d make me scrambled eggs for breakfast and I’d drown them in my mom’s delicious, canned, chili sauce. The memories I have of watching that program with my father are some of the happiest moments of my life.

Fast forward to today: I still can’t go to church because of my immune system, or rather, the lack thereof. In response—and after reading all of the advice that you gave to me—I trolled the interwebs and found the television program that my dad and I used to watch together. Episodes are posted on the ministry’s website and, best of all, they’re free to view. I started watching the sermons regularly. And, while I miss going to church, I feel as though I am starting to heal spiritually.

I think this practice of “going to church”—while sitting on the couch every Sunday—gave me the fortitude I needed to pack Wallace in my suitcase.

wally in my suitcase 2.0

This last week, I decided it was time to go through my closet once more. Even though I had removed quite a bit of clothing items, my closet was still full. Not all of my clothes were going to fit in my suitcase—so I decided to pare my wardrobe down again—especially since I planned on packing Wallace in there.

I know that sounds strange, but I think nestled between my clothes is the safest place for his box of ashes. This is not how I wanted to introduce Wally to his new home. This is not what I imagined this move to look like. But this is what it is: my beloved cat, in a wooden box, inside of my suitcase.

He’s been gone for two months now…and the wound is still raw.

I believe, though, that watching the televised sermons has had a positive impact on my outlook. My memory is not what it used to be—scarring on your brain from cranial edema will do that to you—and, so, I call it a “miracle” that I can remember the following memories at all. While surrounding Wallace’s box of ashes with my clothes, I began to remember how, whenever I used to pack my duffle bag to go somewhere, he would try to climb into it. He was such a big cat; it still amazes me that he could actually squeeze himself into my bag. My memories of opening my duffle bag and finding Wallace inside, lying on top of my clothes, made me smile. I can still remember how he used to look at me in those moments; it was as if he was saying, “bring me, too, Mom”.

So, in the next few weeks, I will be granting him that wish. I will be bringing him with me.

As always, thank you Dear Readers, for continuing to follow my journey through cancer treatment and now transplant recovery. Please continue to send light and good thoughts. I can’t begin to describe how much it means to me. Thank you.

 

With Love,

Laura

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

One Red Blood Cell at a Time….

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As those of you who follow me on Facebook already know, one of my boys has not been feeling well. We brought Wallace to the veterinarian’s office on Tuesday, February 13th. He had some bloodwork done at that time, but the vet asked to keep him for two nights for observation. Wally had, after all, lost 5 pounds since his last visit. More concerning, however was the fact that he was anemic.

Those of you who are fur mamas can probably imagine how poorly I took this news. My thoughts leapt to the absolute darkest outcomes. If it weren’t for Seth, I wouldn’t have been able to rein my anxiety in.

He advised, “Hope for the best, but expect the worst”.

I know. Such a mantra isn’t exactly a hopeful, sunshiny, double-rainbow motto, but it was calming. It was logical. It was exactly what I needed to hear. I think—and I can’t say this with any degree of certainty—that this is the mantra that he used repeatedly throughout my cancer treatment and bone marrow transplant.

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Fast forward to Thursday, February 15th. The vet called asking permission to run some x-rays. Specifically, he was looking for masses (yes, cancer masses). He also wanted to run a thyroid test.

On Friday, February16th, we were told that there were no masses found and that Wallace’s thyroid test came back normal. But, Wallace’s stay at the veterinarian’s office wasn’t—and isn’t–quite over. He apparently has an autoimmune disease that is destroying his red blood cells. It’s most likely based in his bone marrow. Usually, cats who develop this disease, recover quickly once steroids and antibiotics are introduced to their systems. This is not the case with Wallace. He is eating better, he is interactive, bright-eyed, but his red blood cell counts continue to decline.

I feel that there is some irony in the fact that my fur baby has some sort of autoimmune disease that affects his blood. So much of his illness reminds me of my own cancer experience…with the exception that I could have blood transfusions when my red cell counts were low.

Thankfully, my veterinarian is invested in Wallace’s well-being. He wants to do everything he can to give Wallace a chance to respond to the treatment. There is still a chance that if the vet can reverse the loss of red blood cells within the next few days, Wallace will be okay.

It’s only a chance, but it’s something. I keep repeating to myself, “Hope for the best, but expect the worst”. I know he’s a mortal creature, and has to die at some point, but my heart is going to completely shatter if I lose this cat anytime soon.

Please, please keep Wallace in your thoughts.

I go to Burlington, VT on February 22 and 23 for some precautionary MRI’s. I’ll also be having some bloodwork done. It’s really just a standard checkup, but as most survivors will tell you, even simple checkups can ignite all-too familiar fears. The usual nightmares preceding visits like these have already begun.

Please, Dear Readers, continue to send light and love our way. You give us hope to persevere. Thank you, thank you, thank you.

 

With Love,

Laura

For Meme

wreath 2017

 

I’m not writing this blog post to elicit sympathy. I’m writing about this because I think we all need a reminder, every once in a while, that our time here on this earth is precious and short.

Meme is the anglicization of the French word, “memere”. It means, simply, “grandmother”. I, my brother, and all of my cousins lost our grandmother last night (December 17, 2017).

I’m not very good at handling death…mostly because I haven’t had to deal with it often. Sure, I’ve lost beloved pets. I lost a great-uncle, who I absolutely adored, in 2016. I’ve lost cancer buddies. And, still, this loss hurts me all the way down to my soul.

The last time I saw my grandmother was in December of 2016. I visited her in the hospital, but not too long after that visit I was diagnosed with relapsed Acute Lymphoblastic Leukemia (ALL). I started cancer treatment right away and my immune system became a roller coaster. I spent more of 2017 neutropenic (without a functioning immune system) than not, and I couldn’t visit my grandmother in the nursing home like that. Public places are dangerous places for those of us with deficient immune systems…but I still feel terrible that I didn’t see her more often.

I feel even worse that I won’t be able to attend her funeral services because my new immune system still isn’t strong enough to handle close or large gatherings.

I have spent this morning trying to summon good memories of my grandmother. I remember her taking us grandkids down to the river to go swimming on hot summer days. She used to let us brush her hair when she was babysitting us. I remember one sweltering summer afternoon, there was a handful of us grandkids sitting on the steps with her eating watermelon. Meme warned us not to swallow the seeds, because, if we did, watermelons would grow in our stomachs.

Goodness, I thought I would have more time to see her again. In a few months, maybe, after I reached day 100 post-transplant.

I waited too long.

The only comfort I have now—besides my memories—is knowing that she is no longer suffering. She is in a far better place.

 

With Love,

Laura

Until Death Don’t We Part

 

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I didn’t post last week.

And, to be honest, I am very tempted to take the easy way out of this and attribute my silence to poor time management. It isn’t too much of a tall tale, either; I am, after all, swiftly becoming a gifted procrastinator in my old age. I could write a whole post about that—the intersection of perfectionism and procrastination—but, in the spirit of this blog, I’ll give you the truth, even if it’s difficult to do so.

My intention when creating content for this blog was to always have my rough drafts written by Wednesdays, final edits completed by Sunday evenings, and new posts published and shared across social media bright and early on Monday mornings. On paper, it sounds like a fool-proof recipe for consistent blogging. In actuality…things happen…and while there was a very rough draft in existence by Wednesday, it seems the Universe had other plans (or maybe I should say blog topics?) in store for me.

What, you ask, could have persuaded me to discard my rough draft?

Well, there was a barn involved, with light and music filtering through every open window.

There was laughter, a fire pit, and a borrowed blanket spread across my knees.

There was, in short, a wedding.

Weddings, as I am sure you all know and have experienced, can be absolutely wonderful. They’re celebrations—of love, of beginnings. There’s usually good company, good food and good entertainment involved. They’re a chance to dress up and let loose. And, as this particular wedding taught me, they can be perspective-shifting.

Prior to traveling 7+ hours to attend the wedding in question, prior to pinning my hair up or blowing bubbles as the couple walked down the aisle holding hands, I was stressed. I was emotional. I was overtired. I had planned to share some of that—the recent loss of a much-loved great uncle, the helplessness of watching from afar as my grandmother lay ill in the hospital, the fact that suffering and death has become as routine in my world—the world of cancer survivorship—as brushing my teeth. I had even committed some of that anxiety and grief to paper, but it never progressed beyond a first draft. The words, instead, were hushed by the soft shadows spilling across the wedding venue’s lawn.

I could still take the easy way out of this post—it’s not too late yet—and tell you that I spent too much time writing and rewriting a newspaper article in the days before the wedding. I could blame last week’s silence on that…or I could tell you that the venue was decorated with wooden signs, painted with quotes about love and belonging.

I could tell you that I should have checked-in a little less with friends and family before the wedding…or I could tell you that my significant other sat beside me during the ceremony, holding my hand—just as he did at his uncle’s funeral in January.

I could tell you that I should have focused on my blog instead of packing and repacking my suitcase in preparation for the wedding…or I could tell you that at that funeral, the minister eulogized that “grief is the price of love”. While I can’t remember her exact words (and I wish I could), it was clear that, even in our happiest moments, the seeds of sorrow are sown.

So, yes, I could blame my silence on procrastination, or I could simply tell you that it takes time to focus, not on loss and suffering, but on love. On fond memories. On laughter. On hope. To love—our families, our friends, our partners—is a decision. And, like any decision, there are consequences for it. The decision to love is, ultimately, the root of our pain, but it is also the salve that lessens the ache.

You will suffer because of love. You will know tears and loss. And it’s okay. It’s okay to mourn, to be hurt, because it means you were there—all there with that person—using that wonderful heart muscle of yours. When the tears slow a bit, though, remind yourself that love doesn’t just go away.

Remember the moments that made your face and belly hurt from laughter.

Let your ears be filled with the echo of comforting, past conversations.

Summon up all the memories you made together, letting them burn bright and warm when suffering comes to call.

It took me a whole week to find these words, to change my perspective, but I am determined to have more of those moments, more of those conversations—no matter the price.

I am choosing love.