May Flowers

20170430_152419

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

Advertisements

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

The hours after…

17201070_10212366922347383_5356240812587027278_n

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

Take Good Care

This week, Dear Readers, the boys and I will be practicing good self-care.

We’ll be taking naps.

We’ll be cuddling.

And we’ll also be taking cute pictures, like this one:

cuddles-2-1645

I may even share some of those pictures throughout the week—just to make you smile.

Why? Because this world needs light, Dear Readers. It needs laughter. It needs hope. And it needs the beautiful spark already glowing inside of you.

So, please, while navigating the ups and downs of this crazy life, remember to take good care of yourself. Provide that inner spark with kindling. Read a good book. Listen to music. Fan the flame from time to time. Laugh with an old friend. Find joy in movement. Add fuel whenever possible. Nourish your body with healthy food. Get some quality zzz’s.

Do those things that lift your spirits, that make your cheeks glow like the sun.

Because you, whether you realize it or not, may be someone else’s light, guiding them safely to shore.

 

Much Love & Take Good Care,

Laura