It Goes On

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In August, I had a series of MRI’s done to examine my head (to evaluate the state of my edema) and my spine (to check up on the tumor). I never received the results of all that imaging until this past week when, at a neuro-oncology appointment, I was able to view the images for myself.

What were the results?

The images of my spine were devoid of disease.

Just as significant, was the fact that all of the fluid (edema) that had been on my brain in May had resolved itself. The only flaw on the image was the small, circular scar from the Ommaya Reservoir (formerly known as my Unicorn Horn)—and, the scar, other than being visible on my head, is not going to hurt anything.

Overall, it was a positive appointment. I left feeling buoyant. Grateful. Life is slowly taking on some semblance of its former self.

This week’s appointment in Boston went just as well. My blood counts and immune system are developing nicely. I am inching ever closer to the important 100-day mark (when I can eat restaurant pizza again!). I was saddened to learn that the hair I’ve been growing on my currently bald head probably won’t stay, but over the last decade, I’ve been bald quite a few times. It’s something that you learn to live with.

You also learn to live with the fear of recurrence, of developing another malignancy, of forging a ‘happily ever after’ only to have it snatched away. While I think it’s important to acknowledge fear, I think it’s equally important to go on living in spite of it.

To eat the Halloween candy before the holiday.

To be awed by the sunrise.

To find solace in a phone conversation with a good friend.

As always, thank you for the continued prayers and good thoughts. The bone marrow transplant is over, but I still have a year of seclusion and check-ups ahead of me. Please keep the love and light coming. Thank you, thank you, thank you.

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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

Good Thoughts, Please

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Dear Readers,

I may not post on Monday. I am having an unexpected surgery tomorrow–Saturday morning. There is something in my spinal cord that shouldn’t be there. I don’t like asking this, but please send good thoughts, good vibes, and prayers this way.

Thank you for taking this journey with me–for following this blog in the first place. I hope to meet you here again, very soon.

 

With Love,

Laura

A Happy Birthday

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I spent my twenty-fourth birthday in an outpatient cancer clinic. I had a lumbar puncture that day—in which a chemotherapy agent was injected directly into my spinal cord. After that, I was led out to the infusion bay where I was to receive still more chemotherapy, this time as an infusion and with the use of an IV pump and the ash-split (picture two tubes with plastic clamps and nozzles) hanging from my chest.

I don’t remember being upset about spending my birthday that way; treatment had, at that point, been my regular routine—my life—for seven months. It simply made sense to be at the cancer clinic and if the receptionist, when checking me in, or the nurses, when verifying my identity before administering my chemo, wished me a “Happy Birthday”, then great. Wonderful.

You can imagine, Dear Readers, my surprise when, after settling into an infusion chair, additional members of my care team began to arrive in the bay. I didn’t have time to ponder their appearance because it seemed, suddenly, as though everyone—the medical assistants, the nurses, my oncologist, anyone that wasn’t in the middle of an appointment with another patient—had gathered around me, singing “Happy Birthday” in beautiful chorus. One of the research nurses rolled out a cake that she had baked and decorated with buttercream frosting. A helium balloon was tied to my chair.

If I didn’t cry in that moment, I have cried nearly every time since when recalling that day. The memory of that birthday—the first birthday I shouldn’t have had—has become a touchstone for me. In moments in which I feel alone, I remember my care team filling that infusion bay. On days when I question my right to be here, to be alive, I think of their bright smiles, their singing, their wishes for a good day, a healthy future. When I fall into the trap of dreading the aging process, of thinking that I haven’t accomplished enough for my age, I remember the flood of gratitude, the lifting of my heart, that that one balloon and cake perpetuated.

As I embark on my thirtieth year of life, it would be dishonest of me to say that I have no concerns, no sense of loss. The truth is, I do grieve the life that I thought I would have had by now (i.e. stable career, marriage, house, planning a first pregnancy). I do often wonder if there’s been some cosmic error and I’ve been mistaken as an adult when I’m really just a big kid with no idea what she’s doing. I feel all of those things, I think of all of those things. But I also know that each successive year is a gift.

We were not guaranteed our first birthday.

We were never promised that we would see our eighteenth birthday.

We were not assured that our thirtieth birthday would ever arrive.

Will remaining positive about aging be easy? Certainly not. Will there be moments when nostalgia strikes and blinds me to all of the wonderful things currently unfolding in my life? Sure. But, I refuse, absolutely refuse, to take this birthday for granted. I refuse to be ashamed of the laugh lines appearing on my face. I refuse to be angry toward the aching and often pain-riddled body that has carried me this far.

Until my next birthday arrives, this will be my best year.

This birthday—this big, beautiful milestone of a birthday that almost never happened—is a gift I fully intend to embrace.