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

 

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Springing Ahead

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With the time change this past weekend, I began to think about the future. Usually, when I think about it, my mind becomes fear-filled. I’m not quite sure what happened, but this time, I started day-dreaming about the possibility of happier times. I thought I’d share some of the day-dreams that made me smile:

  • For those of you who don’t know, we’ve been house-hunting! Eventually, we will find the perfect house to turn into our own home. So, step one, find and get the house. Step two, hit day 365 post-transplant, obtain Boston’s approval, and bring Alderaan to his new home. Step three, once Aldie has adjusted to the change, we will adopt a (rather large, cuddly) canine that is feline-friendly.
  • Get Boston’s approval to play in the dirt because, although I do not have a green thumb (it’s more like the thumb-of-impending-plant-doom-and-death), I would like to garden. I want to plant giant sunflowers and hollyhocks. I want to raise string beans and snow peas. I am curious about growing Hops.
  • I am excited for the dietary changes that September will bring. I can’t wait to add honey to my tea! I miss honey—just like I miss Goat and Feta Cheeses. Some caramel popcorn would be nice, too.

I am well-aware that you cannot live in the future. We must live in the present. And, yet, in this present moment, I am tired of living in fear of another relapse and/or developing some secondary cancer. This isn’t my first rodeo with cancer, so I know that these fears will never entirely go away. I can, however, choose to ignore these dismal thoughts (unless it becomes apparent that there actually is something wrong with me). Instead, I can summon courage and stubbornness, boldly filling my mind with springtime sunshine, daisies, and the chirp of robins.

We were supposed to go to Boston this coming Wednesday for a check-up, but as many of you probably already know, we’ll be getting a Nor’easter instead. So, we’ll be playing it safe and staying home. I know I don’t really get a say in this, but I refuse to die in a car crash on my way to a cancer/transplant appointment. I mean, how ironic would that be?  So, no. No Boston this week, but I will call later today and reschedule the appointment. Please send light and love.

 

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

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

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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

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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

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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

Days Like Today

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The ride from the hospital to the American Cancer Society’s Hope Lodge is a short one…but I cried big, chemo-y, alligator tears the entire way there. I shed still more happy tears yesterday, while simply sitting in the truck and listening to the radio. I’ll probably keep on crying—because my heart is that full of gratitude.

There was a part of me, Dear Readers, that believed that I was never going to see the outside world again. I was terrified that hospital pumps and the ding of call bells was all that the future would hold for me.

Thank God I was wrong.

Thank God for the excellent team that cared for me while I was inpatient on Shep 4 (the Hematology/Oncology Cancer Floor).

Thank God for YOU, Dear Readers, and all of the prayers and well-wishes that you have shared with me. You truly have been spoon-feeding the strength that I need for this fight. You are carrying us through this storm, one step, one comment, one prayer at a time. NONE of this would be possible without your words of encouragement, without your continued love.

I wish that there were other words that I could share with you—words that could somehow capture the essence of what I am feeling. “Thank you” does not suffice. “This means the world to us” is not enough. In truth, my entire being is overwhelmed with gratitude. Even as the chemotherapy knocks my blood counts down, my veins are full, singing with excitement. My heart is lighter than it has been in weeks. I am so incredibly blessed.

Waking up in the same room as my significant other? A blessing.

Having breakfast with him, in the Hope Lodge’s dining room? A blessing.

Watching him fall asleep in a recliner while I write this? A blessing.

Hope Lodge is the house that saw so much of my first treatment—seven, intense months of it to be exact—and while I never thought that I would be back here, head shaved, port in my chest, doing this again, I am grateful to be here. I feel as though I could press a hand against the wood molding around our door, and all of the peace and healing this home has to offer would somehow sink into me, somehow bolster my resolve to keep moving forward. I look out the window and I see a hill of snow and a set of steps that, even with my left leg brace on, I conquered just this morning. I look at the artwork adorning the walls, and I see more than color and shapes—I see life.

I see life, Dear Readers.

I am not sure that I will ever feel strong enough for this fight, but days like today—I feel gratitude. I feel God’s grace. I feel hope, sending out new roots.

Please continue to send love and light. Although I will be in the capable hands of my outpatient Hematology/Oncology team, tomorrow will bring with it another round of chemotherapy. Pray that it works. Pray that we send this cancer packing once and for all.

 

With Love, Laura

 

Chomping on the Bit

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Dear Readers,

I have been an inpatient on the cancer floor for over 3 weeks now.

I’m not sure where the time has gone…or, really, how I’ve spent it. I’m at a loss for what I’ve been doing or how I’ve been surviving this. Time seems to move both slowly and quickly here, measured not so much by the date on the calendar but by blood counts and chemotherapy drugs. It’s measured in new hardware—a chest power port and the Ommaya Reservoir in my head—and the fact that I can now strap on my own leg brace without assistance. It’s marked by meals that are starting to taste like metal. It’s spent coloring and reading three pages at a time (because the Ommaya still gives me bouts of motion sickness).

I look out the window a lot.

There’s an office across the courtyard and at this time of day, when the security lights are on but before the sun rises, I can see inside of it. There’s artwork on the wall and a vase of giant red flowers. I think I can make out the corner of a well-stocked bookshelf. It’s the sort of place that’s perfect for writing, for quiet contemplation.

Contemplation is something that I have been avoiding recently. True, being ill might be the perfect time to take stock of one’s life, reassess goals, make bright and happy plans for the future—but those hopeful thoughts have shadows.

What if the treatment stops working?

What if I never get to go home?

What if this is what the rest of my life looks like—tubes hanging out of my chest, 6 am blood draws, massive doses of steroids?

I want to live. I want to see what life is like on the other side of this…but, if I am being honest, I still don’t have the strength to endure this treatment. There are days when I think that I might have the resolve to do it—that there’s some steel left in my soul—but then there are mornings like this morning, and I know I am drained. There’s barely enough fight left in me to take a sponge bath or choke down a carton of milk. I know I still need you, Dear Readers, spoon-feeding me encouragement and strength. Prayers work. Good vibes mean something here; they permeate the hospital walls, they chase gloomy thoughts to the far corners of the room, they make the minutes pass a bit more gently. And I wouldn’t be here without them.

Without you, I wouldn’t be making progress.

The week ahead may look different for me. There’s chemo involved, of course—and heaping helpings of steroids still—but there is a small chance, Dear Readers, that the next step in the process has arrived. I may be discharged from the hospital as early as this afternoon (if treatment goes smoothly and if we can be exceptionally persuasive).

Am I excited? I am so very excited at this small measure of freedom! I will be free to leave the confines of the hospital, returning to the outpatient cancer clinic at least three times a week for both the heavy-hitting chemotherapies and injections into my Ommaya Reservoir (because, although the tumor is shrinking, it’s still there, circulating cancer blasts in my central nervous system). I will reside at the wonderful Hope Lodge—a move that will allow me to share the same room with my significant other, to have some comfort even though I am far, far away from our apartment, from Wallace the Wonderful, and from Alderaan.

Please pray that this change happens, Dear Readers. I will miss my inpatient care team, but in many ways, since this possibility was first mentioned, I feel as though I have become more and more horse-like, chomping on my bit. It’s as if the windows that don’t open now have drafts and I can smell the promise of spring. I need more of it. Please continue to send well-wishes. Please keep us in your thoughts.

You are carrying us through this process—one step at a time.

 

With Love, Laura

Blue Skies

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The sky, as seen from my hospital room window, is a beautiful blue today—the kind of blue that reminds me of summer evenings spent wading through dew-soaked grass in search of moths. It’s the same shade that occupies so much of my partner’s eyes. It’s the type of blue that whispers of happiness, of hope.

Today was better, Dear Readers. It consisted of a heaping helping of steroids, multiple doctors’ visits, and long-talks with social workers. My hours were spent making motivational art to hang in my room, talking with my mom, and laughing with a dear friend. I needed a day like today…and I am so, so grateful that I had it.

But, you’re seeing this blog tonight because I won’t be able to do my usual Monday post tomorrow. Tomorrow, I will be in Interventional Radiology, receiving yet another cervical injection of chemotherapy. Then, after that injection, I will receive still more chemotherapy—also injections, but to my legs.

Am I scared? Yes. I am frightened all the way to my cancer-filled marrow. Cervical injections are risky, painful—in fact, I would rank them as being more painful than even bone marrow biopsies—but this is a necessary evil. This evil is going to save me.

It amazes me, in my more detached moments, that pain can heal. That it can burn away disease. That out of these ashes, something whole and healthy and capable of thriving underneath brilliant, blue skies can emerge.

If you have a moment this Monday, Dear Readers, please spare a kind thought for me. Send blue skies. Send healing prayers. Send strength.

 

With Love, Laura