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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.

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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.

Surprise Message

card

This week, I was going to write about anniversaries and birthdays. After all, I just celebrated my 7-year cancerversary (the anniversary of my first cancer diagnosis) and, then, next week my fiancé will be turning another year older. Although these are days and milestones to look forward to, we can’t grow so attached to the countdown to them that we miss the blessings of the present moment. Even in this present moment for me—in the middle of cancer treatment—there are blessings. True, they’re often difficult to spot—but I’ve had the chance to spend more time with my family and fiancé, I’ve also met some truly outstanding healthcare professionals to whom I owe a great deal. Blessings have also come in the form of fellow survivors, nonchalantly dropping a gold and green card off at your infusion chair. The surprise message made my day!!

I am neutropenic once again, which means limited outings. I may need blood and platelet transfusions today. I am tired, teary-eyed, and nauseous. I need to go through my Facebook feed and remove the health gurus I follow, because the truth is, I’m not feeling motivated when I look at those pictures. I feel worse about my own changed body (steroids fight cancer and nausea but also cause weight gain) and my new physical limitations (I’m still relearning how to move).

It’s dark in our living room this morning. I am thinking about warming up some tater tots for breakfast…because that is the extent of my cooking abilities these days. Starches seem to help soak up the excess acid in my belly. I’ll be getting anti-nausea meds when I go into treatment (so even if the tots don’t help with the nausea), relief will be here shortly.

Fluid on the Brain

I’m not sure where I’ve been these past few months. I know I have been in and out of the hospital, swallowing pills and receiving chemotherapy and blood infusions. Since March, I have endured three neurosurgeries (one to place the Ommaya Reservoir (my off-centered unicorn horn), one surgery to biopsy the inflammation and surrounding cerebral edema (to make sure it wasn’t more cancer or an infection) and finally, a third surgery to have the reservoir removed.

Edema can cause an array of problems, including making one’s memories blurry. It slows thought, creativity and speech. It has also affected my mobility. I am relearning how to walk again. Living like this has been incredibly frustrating and humbling. The activities that I once found joy in are now difficult (writing does not come easily anymore).

This summer, so far, has consisted of rain and more rain. I feel like my cancer treatment has followed the same pattern. Am I grateful that I have a cancer that has an established treatment plan? Yes. But I still have quite the distance to travel: a few more weeks of chemotherapy; radiation; the bone marrow transplant, and a whole year of being sequestered while my borrowed marrow makes itself at home in my bones.

To be completely honest, I have met my pain threshold. I can’t stand the idea of any more needles or surgeries. I am ultimately afraid of going to Boston and having the bone marrow transplant. I have been told that with transplants of this nature you can lose your allergies and gain your donor’s. I am grateful for her—whoever she is—but am scared that she might be allergic to cats. I’m not sure how I will get by without writing and without my cats. Time will certainly tell what changes lie ahead, but for now, the boys are wandering around the dining room, sticking their noses to the patio door.

I am not sure what life after treatment will bring. I didn’t the know last time that I had cancer either. When treatment, the first time wrapped up my care team, family and friends would say things like, “now you can get back to living your life”. To this, I would think to myself, “and what life would that be?” I didn’t have a job at the time, didn’t have a sense of purpose. I didn’t have a life to go back to. Fortunately, this time, I have a wonderful fiancé to take the journey with. I am more aware of what I like and dislike for work, and what my purpose in this life could be. I have dreams of owning a home, of adopting children since biological children will be out of the question (largely due to the transplant).

When I was first diagnosed with a relapse of Acute Lymphoblastic Leukemia in March, I gave all of my houseplants to my mother because a low immune system and plants don’t mix. She inherited my orchid. It sits on a shelf in her dining room now and is starting to flower again. Just as I will in the near future.

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

Poop

poop pillow

I can’t believe I am going to write about this—the middle school girl inside of me is giggling at the subject—but I think there’s something to be learned from my recent experience with laxatives. Don’t worry; I won’t go into detail except to explain that many of the anti-nausea medications and chemotherapy that I take as part of my treatment plan can cause constipation. Poop—consistent poop—is part of the cancer world and when that consistency vanishes, the doctors and nurses have plenty of suggestions on how to bring it back. The use of Magnesium Citrate (very similar to preparing for a colonoscopy) is one of those options.

This post, though, really isn’t about bowel movements. It’s about holding on to things that maybe we shouldn’t hold on to—things that weigh us down, that slow our personal growth, that make us sick.

As an anxious person, I hold on to a lot of things that I shouldn’t. I repeat conversations (usually awkward ones) addendum. I worry about anything and everything (i.e. did we leave the stove on? Is there room in my budget for this? I’m cold; do I have a fever again?).

I hold on to dreams that no longer fit: jeans that are too small, shoes that were never comfortable to begin with, art supplies that I have “plans” for and then never utilize.

I also hold on to fear itself. For instance, when we went to Boston for the initial bone marrow transplant consultation, we were given a binder FULL of information regarding transplants. Instead of reading through it, I’ve kept the binder on the coffee table, allowing myself to panic every time I pass by it. The healthier thing to do would be to read the binder, write down questions, and contact the transplant nurse with those questions. But I haven’t done that. I’ve clung to being afraid of the process, to ignorance, to being overwhelmed by everything that needs to be accomplished between now and the transplant.

Not to make excuses, but it’s often easier to hold on to what’s known (and may or may not be healthy for us) than to let go of old hurts, too-small dreams and worries. It’s moments like these—when we’re bogged down by these things—that we need someone to come along with a bottle of hypothetical Magnesium Citrate. Is the cleansing process going to suck? Hell yeah. It’s going to burn. You’re going to question why you’re doing this cleanse, why you hate yourself so much. On the other side, though, is an opportunity to carry a little less of a burden. There’s a chance to create room for new dreams, new memories, positive experiences and growth.

As some of you are already aware, treatment did not go as planned this week. On Monday, I was scheduled to receive an infusion through my chest port, an infusion through my Ommaya Reservoir, and shots of chemotherapy to my legs. My counts were too low, however, for me to receive anything except the infusion through my chest port. I spent yesterday (Tuesday) receiving 2 units of blood and a unit of platelets instead. I feel a little more human, but time (in a couple of hours actually) will tell if the infusions were enough to bump up my numbers and restart treatment.  I can’t say I am looking forward to getting chemotherapy injected into my legs, but each dose brings us a little closer to the end goal.

Please keep us in your thoughts. There are days when this treatment protocol weighs on us, when the light at the end of the tunnel seems farther away than it did just the moment before. Please send light, love and healing thoughts whenever possible. We can’t do this without you.

 

With Love, Laura

A Return to Grace and Gratitude

Cuddles with Squishy

I’ve cried a lot over these last few weeks…mostly in the mornings or when hooked up to an infusion pump. I could blame the deluge of emotion on so of my current life circumstances:

  • I am physically exhausted
  • The chemotherapy that I’ve received  over the past two weeks has been anything but easy to tolerate
  • I am now neutropenic (no immune system whatsoever – which means extra hand-washing and wearing masks for the next week or so until my white blood cell count starts to recover. It means no visitors and being extra vigilant about odd physical symptoms)
  • I feel as though I have lost something of myself – I have difficulty writing; the words do not want to come to me and when they do, they are often incorrect or misspelled. The only reason, Dear Readers, that these posts make any sense is because I have both Seth and my mother proofread them before they go live. My hands tremble just enough from neuropathy (nerve damage from the chemotherapy), that taking photographs has become frustrating.

When I started this journey, I wanted to face it with both grace and gratitude. I realized, while hiding in the bathroom at the cancer center this past Wednesday prior to receiving two units of (AMAZING and REFRESHING) blood, that I haven’t done a very good job with that as of late. I haven’t approached this challenge with grace nor have I been all that grateful for each day. I suppose those two qualities are hard to cultivate when you’re doped up on medications and anemic, but let’s put the excuses aside for just a moment:

  • Every day that I have treatment, I have the opportunity to overhear and witness other survivors’ perspectives. I get to learn a little bit about what still lights their lives up, why they’re pushing forward through their own health challenges.
  • Maybe we’re all just muddling through, forcing smiles when we have to, but this past week has also made me acutely aware that like a New Year’s Resolution, a resolution to face cancer with grace and gratitude will occasionally require mental and emotional recommitment. It will require a renewal of sorts. Grace and gratitude do not just magically appear—they have to be worked toward, and, in many ways, earned.

I am crying (again) as I write this, Dear Readers. They’re not tears of self-pity or fear, but rather the tears of a breakthrough. Will it be easy to find joy on the days when all I want to do is cuddle with Squishy (yes, I am a 30-year-old woman with a stuffed unicorn toy) on the couch? Maybe…but what if cuddling is meant to be that day’s joy? Will I continue to grow frustrated with writing and photography? Probably. But you know what? Practice makes perfect and I do know, from my first rodeo with cancer, that much of this neuropathy will go away. The photographs won’t be blurry forever. The words will come back to me when the chemo regimen slows down.

Grace and gratitude—that’s how I wanted to fight this. And, with occasional reminders and restarts, it is how I will fight this.

Please continue to send light, love and healing thoughts, Dear Readers. Treatment marches on this coming week:

  • On Monday – I will receive an infusion of chemotherapy through my chest port, more chemotherapy through my Ommaya Reservoir, as well as two shots of Erwinnia (another chemotherapy) to my legs
  • On Wednesday – I will receive more Erwinnia
  • On Thursday – I will receive chemotherapy through my Ommaya Reservoir
  • On Friday – I will receive even more Erwinnia.

It’s going to be a busy week, Dear Readers, but it’s one week closer to our goal. It’s another opportunity to practice grace and gratitude.

 

 

 

With Love, Laura

 

Course II

Strength Key Chain

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

Change

Gerbera Daisy - Change

Dear Readers,

Writing, for me, tends to be best accomplished when the sun has not yet risen and the world is still half-asleep. Morning is the time of the day when I do my best thinking, when words come a little easier to me. It’s the time of day when a large cup of coffee holds magic, when the curved back of a sleeping cat puts life into perspective.

It’s rare that I sit down to write at night. And, yet, that’s exactly when this particular blogpost was written. These words found their place on my computer screen, not when the shadows in the room were shortening, but when they began to grow longer. They came to me in the absence of both coffee and of our cats (the boys are still on vacation at their grandparents’ house). I’d say that writing in the evening is a strange development, but, considering that most of my usual habits have been pitched out of the window, is it so strange?

Wallace and I March 2017
(Not the most flattering picture of Wallace the Wonderful and I, but we were briefly reunited last week!)

As many of you know, this last month has been one of tremendous change. I crossed the mysterious border separating the healthy and the ill, reacquiring a diagnosis of Acute Lymphoblastic Leukemia (ALL). I wear a leg brace on my lower left leg now, because the tumor has caused some neurological damage to that foot. At different points in the last thirty days, I have had varying hairstyles—my natural locks, dyed red hair, and now only a soft stubble (which will probably fall out in the next week or two). I went from being device-free to having both a chest port and an Ommaya Reservoir in my head.

Change, it seems, is the rule of my days.

This constant inconsistency has been, I will admit, a bit unnerving. There are moments when it’s hard to digest everything that has happened and everything that will happen, but change is also a powerful teacher.

What do I mean by that? Well, each day presents me with a new set of changes and/or challenges; my problem-solving skills have never been so well-utilized! Can’t drink coffee because it’s too acidic? Add Ovaltine to it and only drink three-fourths of a cup (so I can still get my caffeine fix). Can’t have big meals due to nausea? Eat small snacks. Can’t get rid of the smell of the hospital? Explore aromatherapy and diffusing essential oils.

The fact that so much of my life—and my subsequent treatment plan—seems to err on the side of impermanence is also teaching me about flexibility. In truth, I really don’t know what I am doing for treatment beyond next week. My schedule looks like this:

Thursday – Chemo via the Ommaya and a bone marrow biopsy

Monday – Initial consult in Boston for the bone marrow transplant and tissue-typing

Tuesday – More chemo via the Ommaya

Beyond that? Well, there are ideas including a chemotherapy regimen that stretches into June and a course of radiation at the end of it, but all of that could change depending on the results of both the biopsy and the consult in Boston. Is that anxiety-provoking? Absolutely! I am a planner. I don’t like not knowing what’s going to happen, but this is a reality I have to learn to live with. To accept. To somehow survive and thrive in.

And, that, maybe is why I wrote this at night—to reassure myself that change, even when it is uncomfortable, can be positive. It doesn’t always have to be feared; it can be a tool to make us more adaptable. Maybe change can even be embraced; it can be a yoga partner, teaching us to stretch ourselves open up to new asanas and possibilities.

Tomorrow is going to be a difficult day, Dear Readers. Bone marrow biopsies are not pleasant experiences. Please pray that the procedure goes smoothly. Please pray that the results are in my favor. And, if you are able, please send light and love.

 

With Love, Laura

 

 

The Good That Each Moment Holds

Unicorn Snow Globe 2

Dear Readers,

I am writing this blogpost from the comfort of our own apartment. Sunlight is streaming through the glass, front door and the washing machine is humming in the background. I am surrounded by familiar landmarks—photographs, giant coffee mugs, and piles and piles of both read and unread books.

This feels normal.

This feels good.

If I weren’t bundled up in a sweater and layer of blankets, if I wasn’t fighting nausea, if I wasn’t struggling for control of my left leg, I could almost forget that I have cancer. I could almost forget that I have to return to the outpatient cancer clinic tomorrow for still more chemotherapy.

Almost.

The gravity of the situation sneaks up on me, Dear Readers. It surfaces when I least expect it to, knocking the air out of my lungs. It makes me cry—almost daily—and always in the evenings when the punch of the steroids begins to fade and the exhaustion creeps in. It tries to steal the joy still inherent in my days…but I won’t let it win.

Not today.

Not tomorrow.

Not ever.

As difficult as my current circumstances are, there is still so much to be thankful for. There are blessings hidden in each hour. Every new day that I wake up to is an opportunity for grace and gratitude. AND that is what I will focus on—not on the future, not on whether or not this treatment plan is going to work in the long-term—but on the good that each moment holds.

Will it be easy? No. Absolutely not. I am going to have emotional meltdowns and days that I can’t leave my bed. Tears will be shed. Sobs will be stifled by pillows. It is in these moments that I will remind myself that life still has beauty and that no matter how difficult this journey is, it is worth it.

Tomorrow, I return to the Hematology/Oncology Outpatient Clinic for two different chemotherapies; one will be administered through my Ommaya Reservoir (my off-centered unicorn horn) while the other will be infused through my chest port. On Tuesday, I will take my last mega dose of steroids (yay!). On Thursday, providing my white blood cell count is high enough, I will receive another dose of chemotherapy through the Ommaya as well as undergo a bone marrow biopsy. The results of that biopsy will shape next week’s treatment plan.

On April 3rd, my significant other and I will travel to Boston for the initial bone marrow transplant and tissue-typing consult.

I will need your continued support, Dear Readers, through all of this. I will need your prayers. I will need all the light and love that you can spare. I will do my best to keep you up-to-date, but please know that if you don’t hear from me, I am undoubtedly thinking about you and continuing to count YOU as a blessing.

With Love, Laura