Category: cystic fibrosis
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Day +83: Let non-freedom ring
“I’m not going to wear my ring, okay?” I remember Ramón asking that as we did one last sweep of the house before departing for the hospital on April 3. Now, 90 days later, Ramón’s left hand remains ringless; instead he’s wearing a pulse oximeter. Above his wrist, there’s a peripheral IV. Above that, there’s…
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Day +76: Mashed potatoes
This morning, day +76, while walking the dogs, my mom turned to me and asked, “Did I tell you about the dream where I was feeding Ramón mashed potatoes? He loved them.” Without hesitation, I responded, “Aww, that makes me happy.” Now, reflecting on our exchange, it’s interesting that my first response was one of…
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Day +46: Life is hard.
The past several weeks have been, without a doubt, the most difficult time of my life. Each day, I have been hopeful that Ramón’s status would change enough to dramatically alter the nature of my update. But it hasn’t, so here goes. On April 19, nine days after his stem cell transplant, an infection caused…
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Days +12, 15, and 18
Day +12: A turtle’s pace – April 22, 2020 Though time has been moving at the speed of molasses, it’s moving, and that’s the most important part of this process. The testing they’ve been able to do while Ramón is sedated and intubated all looks quite positive. Until they can fully wake him, though, there…
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Our lucky day?
This photo was taken two years ago today, and it has me feeling somewhat nostalgic. I’m longing for a time when I was the only sick half of this duo—a time when I’d never heard “absolute neutrophil count”—a time when we weren’t living in a hospital, watching medical experts fear for their own lives while…
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Keeping it ill
It’s everywhere you turn: coronavirus this and coronavirus that. One minute, you read an article about a grieving daughter who suddenly lost her mom to the virus; a few minutes later, you see someone suggesting it’s a hoax and that the fear is manufactured. Another person is upset about an event or trip cancellation because…
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Peace out, 2019
The time has finally come to say goodbye to one of the best, most awful years of my life. I got a cold on Thanksgiving (so thankful), which spiraled into quite a mess. After five days in the hospital—as the patient this time—I am at home on day 20 of IV antibiotics. So, as the…
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Some mumbo for your jumbo
First, I want to proactively acknowledge that this post might be a little bit out there, but guess who doesn’t care? Me! I read something transformative this weekend, and I’m still excited, so I want to write about it. I recently mentioned my introduction to Eckhart Tolle, and I’m about halfway through his book, The…
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Wait no more
Yesterday afternoon, I cozied up in bed with the dogs to do a meditation. Let’s be real; we all know that’s the prelude to a mid-day nap. When I woke up, I looked at my phone and quickly realized that the day had come: the FDA approved a treatment that will benefit a significant part…
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It’s just a game. But I still hurt.
October 10. 10/10. That sounds like a date filled with promise, doesn’t it? It’s clean and round and associated with a perfect score. But, as a Braves fan, I have bad memories of October 10, and those are extra poignant today. The year was 2010. I was supposed to be getting outpatient sinus surgery (my…
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Grief: A hard pill to swallow
Grief is very real. It’s exhausting, it’s sneaky, and it’s unpredictable. And it spans to all areas of loss—actual, perceived, or even anticipated loss. Growing up with cystic fibrosis and an overactive mind, I’ve been in stages of grief throughout my life. I grieve the thought of my own mortality. I grieve the loss of…
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Oh my memoir
Yesterday I finished a four-part memoir writing class. When I saw it was being offered, I thought, ‘Well, now’s not really a good time,’ but I was so wrong. Now was and is the perfect time to do anything that’s tugging at your heart. Not only did I learn a lot about writing, but the…
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The gift of time
Look how fancy we get for other people’s weddings and wear jeans to our own! I stumbled across this post the other day and realized I should probably write a sequel – though, really, it’s more pertinent now than it was at the time. When we got married, we were young and bright-eyed and thought…
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Happy birth-of-a-new-chapter day!
What began as Ramón’s birthday ended as the day he was diagnosed with cancer. While we knew May 7, 2019, would be a special day since Ramón was turning the big 4-0, it became *extra* special extra quickly. Here’s what we know so far: Ramón has Acute Myeloid Leukemia, cancer of the blood/bone marrow We’re…
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The struggle has ended
After a 22-year battle with cystic fibrosis, my friend Darcey passed away on Wednesday, August 3. I first met her when I was an intern at the Make-A-Wish Foundation in 2006. I was preparing some wish stories to use in marketing pieces, and I came across a girl with cystic fibrosis who had recently been…