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.

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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

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A Television Fanatic

Alderaan and his chair

Caption: Photo courtesy Mat Perras.

 

It turns out that there’s a side to Alderaan that we didn’t know existed. While enjoying his extended stay at Grandma and Grandpa’s, he’s taken up TV-watching.

He likes nature programs—especially if they feature birds. Reportedly, Aldie was watching one such show, and ran up to the TV to swat a bird. He lived on a farm before he was rescued and adopted…guess he still has the instincts of a hunter/survivalist….

 

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Caption: Photo Courtesy of Mat Perras

Then, later this past week, Alderaan discovered a program on the evolution of cats. There was no swatting the television this time. Instead, he just watched the show, super interested, as the screen showed domestic cats his size and, then, his much larger brethren (lions, tigers, panthers).

There are days when I feel as though I have missed so much—too much—of Aldie’s development from the equivalent of a teenaged cat to a middle-aged feline. But, then, I hear anecdotes about his interest in TV and it makes me smile.

I can’t wait to have our little pal back <3.

 

Please, Dear Readers, continue to send light and love.

 

With Love,

Laura

Love as a Purpose

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First and foremost, Dear Readers, I would like to thank you for responding to last week’s post. Your condolences are appreciated. Your words of advice and encouragement to keep writing buoyed my spirits. Thank you, thank you, thank you.

After reading through the various comments, however, I began to notice some patterns—especially when discussing how to find one’s life purpose. God was mentioned quite a bit. As was love.

I don’t believe that these are two separate answers. I was raised in a Christian household. As such, one of the first things I learned was that “God is Love” …as is written in the first book of John. I’m not sure when or how I forgot that, but I needed all of you to remind me of it.

Loving self, loving others, love as life’s purpose—it requires work. When energy is a problem, I think that that type of love might be one of the first things to be kicked out. It’s probably one of the last things to be let back in, too.

To be clear, over this past year, I never stopped loving my fiancé, our respective families, or our friends. I never stopped loving my boys (Wally and Aldie). But, during my first cancer experience, I did stop loving myself. I was 23 years old and I absolutely hated God. Why was He allowing cancer to happen to me? Why was I suddenly living the life of Job? Fortunately, by the time I relapsed last year (2017), that anger had cooled. My faith had grown just enough to allow me to lean on God again—to ask for prayers and to believe that they would be heard.

Now, I am well-aware that there are other viewpoints, other belief systems out there. If you think what I’m posting today is a bunch of bull, that’s okay. You’re entitled to your opinions just as I am entitled to mine. I do not mean to offend anyone with this post. But, to tell the truth, I really like this idea of love being my purpose here on Earth.

I like the idea of taking care of others—for instance, cleaning out my closet and donating gently used clothes to those in need. I enjoy writing articles, pro bono, for non-profit organizations. Some of you mentioned that the hole Wally left in my heart won’t close up until I find another animal to love. Thankfully, I still have Wally’s little brother, Alderaan. Once we’re given the “okay” from my doctors to live in the same house again, I am sure his presence will help mend my broken heart. If it doesn’t, well, I guess I’ll just have to adopt a dog and give it a warm and loving home (Alderaan is a daddy’s boy after all. See evidence below).

There is peace, for me, in this mission to love—and I am so grateful, Dear Readers, that you brought it up.

Please continue to send light and love, Dear Readers. The road to recovery is still 7+ months long.

 

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

Christmas Day

 

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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

May Flowers

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As I write this, afternoon sunshine fills ours porch—and it warms my skin, the borrowed blood and platelets in my veins, my bones. The last few days, in fact, have brought an unexpected amount of sunshine and good news:

  1. My last IT chemotherapy infusion through my Ommaya Reservoir (unicorn horn) came back cancer-free—meaning I now only have to have one IT infusion per week for the remainder of Course II. We are now one step closer to Boston and one step closer to bone marrow transplant!
  2. I had my first ice cream of the summer and it was delicious.
  3. They weren’t impressed by us, but we were able to visit with Wallace the Wonderful and Alderaan this weekend.
  4. Seth and I are now engaged!!!!!!! For a variety of reasons, I was having a rough afternoon emotionally this past Friday. Sometimes the ugliness of this situation sneaks up on you, but it’s those moments—when things seem at their toughest—that the really good things happen. My (now) fiancé got down on one knee and proposed to me (with a ring that has apparently been hidden somewhere in this apartment for a while. Considering that I fold and put away the laundry, I know the ring wasn’t in his sock drawer).

All of these good things—combined with the warm sunshine—they are utterly overwhelming and wonderful. In many ways, I feel as though I have grown accustomed to hardships, to disappointment, and yet, in the course of a few days, my heart has swollen up with happiness again. April’s showers might just bring May flowers after all.

Seth and I ask, though, that you continue to keep us in your thoughts. While any step closer to Boston is a positive step, it is also tremendously terrifying. I discovered late this past week that upon my arrival in Boston, I will have to have a Hickman Catheter placed on the other side of my chest. It’s my understanding that the Hickman Catheter looks like a super-sized IV. It will have three nozzles hanging off of it; two of these nozzles will be in constant use (chemotherapy, the actual transplant, while the third will be used only if I have difficulty with nutritional in-take). My power port will also be accessed at all times. I hate the idea of having yet another device—especially an external one—but in this instance, I have no choice.

(I will have to, at some point, write about the hit your self-esteem takes during cancer treatment—just not today.)

We also ask that you send good vibes that a donor is found. Unfortunately, my brother was not a match for me, but we have been informed that there are multiple potential matches in the National Bone Marrow Registry. The search is on!

Please continue sending light and love. It is so, so appreciated.

With Love, Laura

Course II

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It’s been a little while since I’ve written anything. I could blame it on the fevers that have plagued me. I could attribute my silence to the fact that I am completely and utterly overwhelmed by the treatment plan looming ahead of me.

When I was diagnosed, I erroneously believed that treatment would consist of Course I (approximately 30 days of chemotherapy) followed by a bone marrow transplant. I am sure you can imagine, then, how overwhelmed I was to learn that not only would I have to endure Course I, I would also have to somehow survive 54+ days of Course II.

Fifty-four days of chemotherapy.

At the end of those fifty-four days, providing I continue to respond to the treatment, I will also have to undergo a course of radiation. The radiation is designed to make sure that the tumor is completely eradicated before moving forward with the transplant.

Prior to my bone marrow transplant (and in an effort to avoid any infection), I will have to visit a dentist. Considering how my immune system fluctuates, finding the time to see a dentist may prove more difficult than anticipated—I can’t have work done if I don’t have an immune system, and it’s something that needs to be completed prior to finding a donor.

There just seems as though there’s a lot to do. And, yes, I am afraid.

Once Course II’s 54 days have passed and a donor has been located, I will go to Boston for six days of intense chemotherapy. My immune system will be completely decimated. I will likely be sick. I will most likely lose my hair. After the sixth day, the donor’s bone marrow will be infused into my body. I will spend four weeks as an in-patient, waiting for the new bone marrow to take root. Praying, that the donor’s immune system won’t, in fact, kill me (because that is a possibility).

After, as my counts begin to rise, we will visit Boston once a week for a month to monitor for Graft-Host Disease. These visits will continue for six months, my time eventually shared between Boston and Burlington. I won’t have an immune system for much of that time and will be sporting gloves and a mask. I won’t be visiting people.

This is life. It makes my heart race. It makes breathing difficult.

But, there have also been beautiful moments—small moments of victory. My bone marrow now contains less than 1% cancer blasts. My Central Spinal Fluid (CSF) is still not clear, but we’re making progress, each day. Time is passing and with it, the remaining days in this treatment plan. There is an end in sight…albeit a fair distance away…but it’s marching closer and closer.

The week ahead will consist of four days (in a row) of chemotherapy. I am still occasionally struggling with fevers. My appetite has all but vanished. This isn’t easy.  I often tear up, unsure how I can fight this fight. Please, Dear Readers, send light, love and healing thoughts. We need all the strength that we can get.

 

With Love, Laura

The hours after…

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In the hours after my Ommaya Reservoir was surgically placed, I sobbed. A wave of grief and tears rushed at me, clinging to me as fiercely as the blood and the betadine that coated my scalp. I thought I had made peace with the fact that I would be a unicorn with an off-centered horn. I thought I was emotionally and mentally ready for this step.

It turns out that “ready” doesn’t exist.

“Ready” is the lie we tell ourselves in order to take the next, necessary step.

In the days after my Ommaya Reservoir was placed, I dry heaved. I slept a lot. I discovered that staring at screens for even short periods of time results in something akin to motion sickness. Writing this blogpost has been a form of medieval torture. Even reading is a hazardous pastime now. I have been told that these side-effects, so similar to those of having a concussion, should diminish with time. My brain and the Ommaya will eventually find some easy equilibrium. This—the pain, the slight swelling, the difficulty doing those things that usually nourish my soul—all of it is temporary.

And that, Dear Readers, is the mantra that carried me through the weekend: that this is temporary.

This discomfort is temporary.

This treatment, although a thousand times more arduous than my first cancer treatment, is temporary.

This cancer is temporary.

What do I mean by all that? Well, the first thing you should know is that at this hospital, Hematology/Oncology inpatients are visited daily by a team of attending physicians, fellows, medical students, and nurses. The faces comprising the team usually cycle out on a weekly basis. Team members also change every weekend (because even superheroes need days off). It was during this last weekend rotation, that the Hematologist/Oncologist that cared for me likened my cancer relapse to a temporary and oh-so-beautifully ordinary situation: that of a clogged sink.

At some unknown moment during the past few months, my bone marrow began to flow with cancer blasts, just as an open spigot would. Normally, leaving a faucet running might not be a problem, but sinks sometimes plug up. Sometimes, they stop draining altogether. My spinal cord, Dear Readers, stopped draining. It plugged up with a tumor. Water sloshed over the sink’s basin, spilling onto the floor in the form of pain, lost flexibility, impaired mobility.

Like any clogged sink, though, there are things that we can do to resolve the situation.

There are towels down on the floor, now, sopping up the spillage. Each injection of chemotherapy into my Ommaya Reservoir will clear still more of the tumor from my spinal cord, allowing the sink to drain down. Each dose of systemic chemotherapy administered through the power port in my chest will clean the cancer out of my bone marrow, shutting off the spigot’s flow.

Eventually the sink will drain.

Eventually it will dry out.

Eventually it will be ready for a bone marrow transplant.

So, yes, in the hours after my Ommaya Reservoir was placed, I sobbed. In the days after the surgery, I have struggled with nausea, fatigue and pain. But, eventually—in the weeks, in the months ahead—while shuffling one, unsteady foot in front of the other, I will regain some semblance of equilibrium. I will remind myself that “temporary” is, in actuality, a beautiful word. And, when I am too tired or in too much pain, I will simply close my eyes and conjure light. I will let it radiate within me, and out of me, flowing from the crown of my head like a unicorn’s silver and gold mane. I will let the love and strength you have gifted me, Dear Readers, gather in my newborn legs. I am, after all, a creature being remade.

I ask, once again, for you to send kind thoughts this upcoming week. Send light. Send love. Send strength.

This treatment plan is ugly, Dear Readers, and the days ahead of me are not easy ones. Now that the Ommaya Reservoir has been placed, the treatment regimen will intensify. I will be receiving harsher chemotherapies, nearly every day. This cancer will be shown no mercy…which means neither will I.

For now. Temporarily.

 

With Love, Laura

The Ommaya

 

Dear Readers,

It saddens me to write this, but you may not hear from me again until next week.

Due to the size and location of the tumor in my spinal cord, my treatment plan has followed an unconventional path. What would have been treated with injections of chemotherapy into my lumbar spine, had to be addressed with cervical neck (c-spine) injections—which, as I am sure you can imagine, are painful and are accompanied by a whole host of possible complications. So far, I have been blessed with smooth, uncomplicated procedures, but continuing the c-spine injections is not a viable or long-term solution. The placement of an Ommaya Reservoir is.

I am no expert on the Ommaya Reservoir—and the best way for me to describe it to you (and to myself) is to say simply that in some ways, it resembles the port currently imbedded in my chest. It will give my care team safer access to my spinal cord fluid. It can be accessed in an outpatient environment. It will cut down on the number of procedures that I will have to endure. It has a lower risk of infection.

The catch? The Ommaya Reservoir is, for lack of better term, a “head port”. Tomorrow, March 9th, 2017, I will go to the Operating Room where a team of talented neurosurgeons will remove a small piece of bone from my skull. They will place the Ommaya Reservoir in my head and then they will cover it again with my skin. I will be in recovery for a bit, hopefully transferred back to my room on the cancer floor before the day’s conclusion.

The Reservoir, when I lose my hair, will be noticeable. It’ll be a small bump that I will wear for the rest of my life. The Reservoir, once implanted, is usually not removed. It’s permanent. It will become a part of me—for however long I am here on this earth.

Dear Readers, there is so much going through my mind right now! Do I want to undergo brain surgery? Do I want a permanent implant in my head? Am I afraid of complications? Am I terrified that this thing is going to cause changes in my mental function and personality? That it might impact my writing abilities? Absolutely. The fear of it lingers in every blood cell in my body. It darts between my nerves. It is the thought lurking under every other thought I currently have.

I am so f*&king scared.

But this is forward motion. This surgery is a much-needed step toward healing. This implant is the avenue by which I will receive the medications that I need to survive—and, if it means I have to take these chances, that my vanity has to suffer a bit, then I will do it. I will wear that bump for the rest of my life and I when I see it the mirror—even through rivers of tears—I will thank God for it.

I am changing, Dear Readers…in ways I could not have anticipated. This Ommaya Reservoir, as bittersweet as it is, it will be my off-centered unicorn horn. It will be a source of healing and power. I will envision it as gateway for grace and for gratitude to pass through. Eventually, it will usher in the rebirth of beauty. I was, according to my brother, a phoenix the last time this cancer struck. This time, I am the unicorn slowly finding my legs.

If you have a moment over the next few days, Dear Readers, please spare me a kind thought. Pray for a safe and effective surgery. Pray for my care team, for my family, for the incredible man that has been holding my hand since this journey began. Send us love. Send us strength.

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We walked outside (for the first time since 2/25/17)!!

Your love makes a difference, Dear Readers. It is felt. Please keep it coming.

 

With Love, Laura

 

Unexpected Wins

 

I can’t lie to you, Dear Readers. I just can’t. I was absolutely terrified of what Monday, March 6th, 2017 might bring. I was internally trembling at the idea of having yet another cervical injection of chemotherapy into the back of my neck. I was afraid of waking up on the table (again) with a needle lodged in my spinal cord, moaning. I was dreading the resulting headache and pain. The risks associated with the procedure kept running through my mind. I was worried, too, that the day’s treatment regimen of additional shots to my legs would make me nauseous. In short, I wasn’t sure how I was going to survive Monday.

And, yet, not only did I survive it…but Monday was a win.

It was an unexpected win to be sure, but it was a win because I have been blessed with an outstanding care team—everyone from my oncology nurses and doctors on the floor, to the Interventional Radiologists performing the cervical injection, to the volunteers and support staff that take the time each day to repair my fraying seams.

In many ways, I feel as though I am a tapestry being ripped out, woven back together. These repairs they’re making to me—they mean something. I am not sure what I will look like at the end of this process, or what image might emerge among the woven threads, but occasionally I catch a glimpse of it.

I see something vibrant, as red as the dye a dear friend used to color my hair with. It’s the shade of scarlet that my LNA’s used in the poster that they made for my room.

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I feel a blanket of love, as bright as the rainbow of cards and well-wishes that flooded my bed yesterday afternoon.

I feel calm, in my mother’s warm embrace, in the way my partner holds my hand while we watch television at the end of the day.

Not every day will be like this past Monday. There will be more painful procedures to come. There will be nausea, fluctuations in weight, hair loss. There will be tears and heartache. Suffering is, after all, an inevitable part of this journey, of being human.

But there will also be wins. Small wins. Landslide wins. Wins that no matter what shape or size they arrive in, we have to seize with both hands—even if our finger strength is weak. Even if we need someone to help us hold on.

I hope, Dear Readers, that this week brings you some wins, too. I hope you feel loved and appreciated.  I hope you know that, each day, your messages and prayers are giving me the strength to face this challenge with both grace and gratitude.

 

With So Much Love, Laura