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Always a rainbow

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When home between hospitalizations in late March, I heard a song that resonated with me. As my anxiety about COVID-19 and transplant steadily escalated, I kept wondering why life couldn’t be easier. The song, “Rainbow” by Kacey Musgraves, is about believing things will improve despite the storms that enter your life. In those unnerving days of vulnerability and despair, the lyrics reminded me that, though my feelings were entirely valid, they were also transient.When it rains, it pours, but you didn't even notice
It ain't rainin' anymore, it's hard to breathe when all you know is
The struggle of staying above the rising water lineWell, the sky is finally open, the rain and wind stopped blowin'
But you're stuck out in the same ol' storm again
You hold tight to your umbrella, well, darlin' I'm just tryin' to tell ya
That there's always been a rainbow hangin' over your headI listened to the song many more times that night, sometimes with tears i…

Befores and afters

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A few weeks ago, two of my long-time cohorts stopped by to enjoy drinks and conversation – and bring dinner (Yum!). My friend Amanda helped me and Ramón buy our house in 2018, and we were reminiscing about how painfully easy we were as clients in that we had no real must-haves or dealbreakers. When looking at houses, Amanda suggested we narrow our search, but Ramón and I insisted we’d be happy anywhere as long as we were together. This was a far cry from every buyer on HGTV; somebody’s usually demanding a house with a dedicated hot yoga space while the other is hellbent on finding a kitchen that cooks meals by itself.
Ramón was in Michigan visiting family when Amanda and I decided on a home. To my surprise, the house that interested me the most needed a lot of work. I remember getting Ramón on the phone and telling him that it was going to be quite a project, to which he responded, “Okay, let’s do it.” And we did. In our short stint there, we renovated the entire interior and planned t…

An August of opportunity

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Though I’ve been writing regularly, I haven’t posted much lately. This is mostly for good reason. For example, my friend Elaine came back into town over the weekend, and we had a bit of a staycation at a lovely Airbnb in Midtown Atlanta. I did some normal-people things such as enter a grocery store (masked) for the first time since February. I even got in a swimming pool, enjoyed a comedy show at an amphitheater, and paddle-boarded on a lake. Watch out, world; the Drewdle is loose!
So, what are my days looking like lately? Well, for one, it’s crazy not being confined to a hospital room: something I realize was a luxury in terms of the virus, yet it was also torturous because all I wanted to do was fix a completely irreparable situation. Since most of my time spent at the hospital resulted from my aggressive legal speak (#judgewifelife), I was never able to leave Ramón’s room when I was there due to visitor restrictions. Practically speaking, I was in solitary confinement, handcuffed by…

One week

It’s been one week since we said goodbye to Ramón, and it’s been more than 14 weeks since I said farewell to the version of Ramón I’d known since December 2011. In many ways, I’ve been grieving since April, but the sorrow has taken a different shape now, knowing that the possibility of recovery no longer remains. At times, this materializes as feelings of relief, since the clarity for which I’d longed has arrived and is indisputable. However, other times I miss the ambiguity of where we were because it included space for potential and opportunity. And hope.
Although the past week has been heavy, it’s also been magically light due to the outpouring of love. I’ve connected with friends from many walks of life, I’ve heard from people whose lives were better off because of Ramón, and I’ve even linked up with strangers who happened upon my posts online. Despite the irrefutable absence that unexpectedly reveals itself throughout the days, the moments have been woven together by undeniable fe…

Day ???

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Many of you have followed our story and its constant ups and downs, particularly since Ramón’s chemo/radiation/transplant complication-induced cardiac arrest on April 19, 2020. Though it felt like we’d finally settled into an “up” after a tumultuous three months, Ramón died yesterday at 10:52 a.m. Things were going well [enough] until suddenly they weren’t. A respiratory event yesterday morning led to yet another cardiac episode and, though we hoped to sustain Ramón’s life long enough for his family to get to town, it didn’t unfold that way.

So, lying in an ICU bed with Ramón, I held onto him as tight as possible until they said I had to go. Every muscle in my body aches today, but that’s the price I paid to send him off in the midst of a massive hug. Ramón’s family in Michigan joined us via video as we reminded him just how much we loved him. As we finished saying our goodbyes, he was clinging to life with the help of very advanced life support. When we told the medical team it was …

Day +100: Here so soon?

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Holy Day +100 since Ramón’s transplant! Exactly 100 days ago, on April 10, Ramón received his stem cell transplant. From 11:25 a.m. to 12:10 p.m. ET, we quietly watched YuSun’s stem cells slowly assume residence in Ramón’s body, ready to evict his leukemia once and for all. 
I’d heard about the coveted Day +100, and now we’re here. We have taken some major detours, but we made it! When a transplant recipient hits Day +100, the window of greatest risk closes, and the donor stem cells should be forming new blood cells. Leading up to transplant, I recall a moment when Ramón looked me straight in the eyes and said, with absolute conviction, “I just know this transplant is going to work.” I could tell he believed it with every ounce of his body, and I did, too. So far, he’s been right about the transplant. 
Tests around Day +30 and Day +60 indicated that the transplant was successful. Did you know that Ramón’s blood DNA was replaced by his sister’s? So, if he were to get a blood test, his…

Day +93 (today): Hospital Day 100 (yesterday)

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Yesterday was Ramón’s 100th consecutive day in the hospital. Though each individual day has felt exhaustingly long, the days have merged together in a way that seems like no time has passed. Despite all of the twists and turns that led us here, it was a good day. Some days feel like setbacks, and I find myself actively inventorying what’s wrong with this situation. However, day 100 was the best day I’ve had in quite a while; instead of focusing on what’s absent, I concentrated on what’s right here in front of me.

In the early hours of the day, when I should have been sleeping, I checked on Ramón and was taken aback by how beautifully peaceful he looked. Excluding the headband, he looked just like he always does at home when I stare at him in the night like a total creep. The moment felt significant for reasons I can’t explain; something just felt very perfect.

Then, when I got up for the day, I asked the nurse to bring me coffee (not because I’m a diva, but because I’m not allowed to…

Day +83: Let non-freedom ring

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*Full disclosure: I'm backdating this post because I was too tired to post it the day I wrote it. Then I completely forgot.*

“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 a PICC line that’s being removed today.

On a whim one afternoon in May 2015, Ramón asked if I wanted to go ring shopping. We had this conversation often, and I finally agreed that day. After looking at a few antique stores, a cashier suggested a family-owned jeweler that was nearby, so we headed that direction.

We sat in the car in the jewelry store parking lot while I unhooked my IV antibiotic from my PICC line. My lungs were acting up, so I was doing a round of two different IV antibiotics to whip them into shape. When we entered the store, the jeweler …

Day +79: inTENSE

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I awoke this morning with a joyous heart, knowing that Ramón is waking up in a regular hospital room; he escaped the ICU! He required some ventilator support the past few weeks to rest his lungs, but he built his way back up to breathing on his own. Ramón successfully completed a 24-hour breathing trial yesterday, so he got the all-clear to move back to the bone marrow transplant floor. Hooray!

Early this morning, I woke up and noticed it was approaching 5:00 a.m. Well aware that it’s a Sunday, it took me back to the night we nearly lost Ramón. Though it feels somewhat naïve now, I remember the announcement that they got his pulse back. At that moment in time, I thought the scariest part was over. I thought, ‘Whew, he’s going to be okay,’ not knowing what his body might have endured while he was almost lifeless. Now, ten weeks have passed since I heard Ramón’s voice or laugh, and I never could have imagined things would unfold this way.

Lately I struggle with what tense to use when t…

Day +76: Mashed potatoes (and a side of rambling)

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This morning, 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 joy. If Ramón was four months old, the conversation might have been commonplace, but he’s not. Several months ago, my mom’s dream would have been hilarious, yet now it’s entirely appropriate. Circumstances have redefined my waking dreams, too, and I’m trying – and mostly succeeding – to accept the changes with an open mind.

It got me thinking about the benefits of open-mindedness. Being open-minded not only creates the opportunity for change and acceptance, but it also frees us from our ego-driven need to be all-knowing. I’ll share an example from my own adolescence. Growing up with cystic fibrosis, I carried my share of sadness because my health generated feelings of isolation and fe…