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Three

welcome home from bmt

Dear Readers:

It’s been three weeks and three days since I’ve turned my laptop on to write.
The pause in creativity has left me with a multitude of subjects on which to write. I could recount the hazy memories I do have of my bone marrow transplant—the reason for my 3-week hiatus. I could describe how I was so sick during the procedure and, so high on Dilaudid, that my nurses asked Seth to stay overnight, to help calm me down and, ultimately, to help take care of me.
I am so blessed to call this man mine.

Would I love Seth even if he weren’t a medical professional capable of understanding what my medical teams say during my many appointments? Absolutely. He is thoughtful and intelligent and a huge pain in the butt that makes me smile daily.

Tuesday, October 10th, 2017, was our first full day home. And what did he do? Seth went grocery shopping to make sure I had plenty to eat. Later, he let me bounce blog ideas off of him.

His suggestion? To write about “strength”.

This blog opened in January with the intention of exploring strength—what it means, what it feels like, what it looks like. I wrote, again and again, how I didn’t think I had enough of it to weather this cancer relapse. Seth and I disagree on this point, but I still feel as though I have never been strong and that I could use more strength. I have a year of being sequestered ahead of me, as my new immune system matures and my body recovers from high doses of chemotherapy and full-body radiation. I will spend the next year praying that my donor’s cells and my own get along. I have follow-up appointments to attend, a Hickman tunneled catheter to have removed (hopefully later this week!), and eyelashes and hair to regrow.

The truth is, I wouldn’t have gotten through the last three weeks on my own. I was blessed with parents, a brother, and friends that cleaned our apartment so I would have a safe environment to return to after the bone marrow transplant. I was showered with YOUR love and prayers. Throughout my procedure, I had my soulmate holding my hand.

Strength, as the last three weeks and three days have proven, is something to be carefully cultivated. It has many different sources, it can be replenished at any time—if only one asks for light and love when the shadows seemingly grow long.

Please continue sending good thoughts our way. They healing process has only really just begun and we need all the strength and courage we can get. Thank you, thank you, thank you.

With Love,
Laura

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Facing Fear

Dear Readers,

We leave for Boston this week.

My anxiety about the bone marrow transplant comes in waves. Sometimes I am perfectly calm, relieved even, that the end of this cancer is finally within sight. Other times, I feel as though I am hanging on to my sanity by a mere thread. This treatment will not be easy. I am afraid. In the moments when the fear is too much, I remember my father’s recent words, “you’ve been through worse”.

It’s the truth.

I have been through worse. In July 2010, I almost died from a mysterious infection. I spent 10 days in the ICU and woke up on a ventilator, with liver failure, receiving dialysis. Additionally, the neurosurgeries of this past spring were certainly not a walk in the park. Compared to all of these emergent situations, what is one month at a prestigious cancer institute receiving a bone marrow transplant that could cure me of ALL forever? Is fear really a warranted reaction? Or am I exhausting myself before even arriving on campus?

I can’t take credit for surviving either ICU or my neurosurgeries. There were prayers being said for me during both of these crises and, without those positive thoughts and vibes, I’m not sure I’d still be here.

The treatment plan, for while I am in Boston goes as thus:
9/15 – Admission and Hickman placement
9/16 – Chemotherapy
9/17 – Chemotherapy
9/18 – Total Body Irradiation (TBI) – two times a day, 20 minutes each time
9/19 – TBI
9/20 – TBI
9/21 – Actual transplant

Designed to wipe out my immune system, I expect treatment to be exhausting. I expect treatment to make me nauseous and uncomfortable. I fully expect to be in the hospital for at least a month, or until my new immune system rallies.

Daisy grow kit

A couple of weeks ago, I received a basket with a variety of goodies in it—including the above daisy growing kit. For now, until I am cleared to garden again, the kit will remain as it is—unused but full of potential beauty—just like the future.

Please continue to send light and love our way. We can’t do this without you.

With Love,
Laura & Seth & Co.

Reminders

I was given a large binder of reading material the first time I went to Boston for a bone marrow transplant consultation. I procrastinated when it came to reading through it because it was just too much—it was overwhelming, frightening. As the date of the transplant has approached, I have started looking through the binder, specifically at the list of items I can and can’t bring with me to the hospital.

The list is quite extensive. There are so many rules, so many things I can’t bring (including a hairbrush). Patients are, though, encouraged to bring “Images/items that help remind you of your goal of getting well.”

The space in my suitcase is limited, so instead of packing multiple reminders, I filled a USB drive with pictures that I hold near and dear. As long as neither the USB drive or my laptop is fried in the cleaning process (which will take place as soon as I arrive), I can look at my reasons for undergoing this bone marrow transplant whenever I need to. I will smile. I will cry tears of joy and gratitude for all of these good things and people that are in my life—despite cancer.

Not shown above, are the family pictures I have saved on the USB drive. Pictures of my family, of Seth’s family.

Thank you—to all of you—for the positive thoughts and continued prayer. It means the world to us. Please keep the love and light coming.

With Love,
Laura

Protective Service, Courtesy of Wallace and Alderaan

Selfie with Aldie

Well, Dear Readers, it’s been a little while since I’ve posted anything here.

I have an excuse: Radiation Therapy.

I am grateful for the nine, exceedingly quick sessions of radiation—not only because I am hoping that is has killed what remains of the tumor in my spinal cord, but because it has given me some peace of mind regarding the radiation scheduled to take place in Boston. Although there is a huge difference between localized radiation and total body irradiation (which I will receive in Boston), I feel a little more prepared now. I know what the machine sounds like. I know what radiation itself feels like.

Am I still frightened? Yes. Very much so.

As the days march onward and September 15th (my new admission date) creeps ever closer, it gets increasingly difficult to sleep. I have been waking up at ridiculous hours—3am, 4am. 5am is now sleeping in for me.

Wallace

I spent this past Saturday night at my parents’ house. I think my boys—Wallace the Wonderful and Alderaan—could tell that something was on my mind. Around 3 am, Aldie claimed the foot of the bed. Around 5:20am, Wallace jumped up by my pillow. My boys surrounded me, as if guarding me from all the nightmares that regularly visit me.

Naptime

Why is this important? Cats jump up on beds all of the time; why would this night be any different than other nights? As the date of the transplant approaches, I realize that I still need strength. I need to know that protection is nearby. I need to be reminded that support is easily found…if only one looks for it.

Dear Readers, please keep my family, Seth and I in your thoughts and prayers. Please keep the light and love coming. This has not been an easy journey nor has it been short. Please hang in there with me. Thank you, thank you, thank you.

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.

20170226_103146
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