Posts

Showing posts from 2020

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 ???

Image
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?

Image
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)

Image
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

Image
*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

Image
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)

Image
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…

Day +67: Smoother waters

Image
It’s day +67 since Ramón’s transplant. Given that the first 100 days are critical, it’s relieving to know we’re two-thirds of the way through the hard part of the transplant process. We received test results today confirming that Ramón has no evidence of disease, and his sister’s cells are still 100% running the show. These are important milestones, of course, but even the good news is tampered by the brain injury caveat.

My phone often suggests that I glance back at photos, and I’ve been taking the bait lately. In many ways, it’s nice to reflect on the good times, remembering a life that was much less complex. However, it’s also difficult because life looks so dramatically different now that grief can quickly overtake the nostalgia. Today I was reminded of this picture of Ramón and our dearly departed Phoenix at the beach two years ago.


It got me thinking about the ocean and how surprising it can be. Sometimes, you’re casually standing knee-deep, waiting for another wave to rhythmica…

Day +57: Setting hope

Image
Saturday into Sunday has become my toughest time of the week. It makes me reflect on "the night" when Ramón was feeling indescribably rough, culminating in the early morning loss of airway and subsequent cardiac arrest. It serves as a marker of how long it's been, and we're now officially in week 8. In the early days, this never entered my mind as a possibility. I was somewhat naively but optimistically expecting a call at any hour, letting me know Ramón was awake and asking about me.

As each day passes, I try to remain hopeful. On Wednesday the neurologist reminded me that "it's still early," which is an interesting way to describe the longest, most overwhelming days of my life. But she's right; we knew from the beginning that time would play the biggest role in Ramón's recovery. Sometimes I view the passage of time as one day closer, and other times it's one day deeper into heartache. On April 23, five days in, a dear friend told me, &quo…

Day +56: Caray on

Another day, another Atlanta Braves surprise! Tonight we received this message from announcer Chip Caray aka Harry Caray III. I am so grateful for all the people that have stepped up to help make us smile. For now, I'm smiling solo, but I remain hopeful that I'll relive all of this with Ramón when he awakens from his very lengthy slumber.

Sunday will mark seven weeks since his cardiac arrest; that's seven weeks without one of his hugs, laughs, or awful jokes that he repeats because he thinks I didn't hear him when I certainly did. Ugh, I miss it all. Thank you to Chip and my friend, Uren, for making hospital day 63 a hit! ("Do you get it? A hit?" -Something Ramón would say)

Day +55: Holy Snit

Alright, folks. Things are escalating! Today we got this incredibly kind video from Atlanta Braves Manager Brian Snitker. I'll admit this week has been a tough one; we're working to determine where Ramón will go next to give him the best chance for neuro recovery, and we've run into many obstacles.

Though I've shed countless tears of sadness this week, my hope was to regroup and shift back into a perspective of gratitude. Last night's email from Hank Aaron (so fun to say) helped get me started, and Snit's video has given me the momentum to keep going. Gratitude, I'm home and hope to stay for a while!

Day +54: Keep swinging

Image
You know when you’re just staring at the computer screen, deciding what to say to Hank Aaron? Do you not know that feeling? Because I do! Tonight, Hammerin’ Hank took the time to email us after becoming aware of our story. I was born a Braves fan, and Ramón grew up watching the games on TBS, despite living nowhere near Atlanta. Together we’ve gone to many games, made trips to Florida for spring training, and spent a good portion of last season cheering from the hospital following Ramón’s leukemia diagnosis.
.
After receiving Hank’s email, I read it multiple times to make sure I was seeing correctly. “You are not going to believe who emailed us,” I excitedly told Ramón tonight – day 61 of his current hospitalization and day 89 this year. Though he’s still unresponsive, I read him Hank’s words of encouragement, hoping they’ll find the sweet spot that leads to progress.
.
I love this quote from Hank: "My motto was always to keep swinging. Whether I was in a slump or feeling badly o…

Day +46: Life is hard.

Image
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 Ramón’s throat to close, which thrust him into cardiac arrest. He turned to me and – barely audible – said, “I’m choking,” before going down. What happened next was a blur. “We’re losing him,” someone shouted. “Somebody start compressions,” another voice demanded while I was escorted out of the room.

As I took the longest walk of my life, though just down the hall, I heard over the intercom, “Code blue. Hospital tower south. Ninth floor. Room 903.” Code blue always makes me pause and close my eyes, mustering up every ounce of energy I have, knowing that it’s the most serious of codes: a resuscitative effort. With each repetition of Ramón’s room number over the intercom, I became mo…

Day +37: Developing

Image
I love this picture from a friend's wedding in Charleston in 2014. It looks so effortless and obnoxiously lovey-dovey. In reality, though, I kept demanding that Ramón look at me like he was in love because I saw the photographer lurking. You can't conclude that from the final product alone, but that's how we got there.

Right now I'd give anything to know the final product that will result from the challenge we're facing, but unfortunately I don't. I do know Ramón needs your thoughts, prayers, and positivity. Although some photos can be staged (calculated, even), this one is developing at its own pace.  As always, I appreciate you and will update as things come into focus. 💙

Raise a ____ for Ramón

Image
Happy almost birthday to this guy! It's the night before Ramón's birthday, which means it's also the eve of his leukemia diagnosis. Ramón remains in the ICU, but he should be coming off all sedation in the very near future.

Ramón's newly acquired immune system is working well so far, and his white blood cell count increased exponentially last week. Thank you for all the moves you busted for Ramón!

I want to honor Ramón's birthday by toasting to him tomorrow. My first thought was to suggest coffee so he can get all the wake-up vibes possible. However, I won't stop you from getting rowdy for Ramón, either. We certainly weren't expecting another hospital birthday (and definitely not like this), so it's our duty to celebrate for him.

Though there is still a lot of uncertainty ahead, we can put our own spin on tomorrow. Let's make it special by raising a _____ for Ramón!


Day +18: Still dancing

Image
Thank you all for helping make my birthday special. Though a big part of my heart was missing, my heart was warmed every time I received a birthday wish, a candle photo, or a donation to the CFF. The greatest gift of all … drumroll … was that I got to go see Ramón in the hospital. He was sedated, but I got some solid hand squeezes at the best possible times. I also left a playlist of his favorite songs, and I heard his music in the background when the doctor Facetimed me yesterday.

It was a sad, beautiful, difficult, and amazing day, but it was also a hope-y birthday. As of yesterday, we still hadn’t seen any change in his white blood cell count, so turn up the music and dance like you’ve got nothing to lose. When I was with him in-person on Sunday, I told him he simply wouldn’t believe the amount of support he has. I’m holding on to my rope of hope, understanding that each day brings Ramón closer to healing. And, in moments when I feel like a candle in the wind, I know I’m surrounded…

Day +15: Light and love

Image
I’m updating to let you know that there’s not much of an update. The doctors think Ramón’s airway closed due to an infection just above his voice box, combined with throat inflammation caused by the radiation he received before transplant (a common side effect). Because his immune system was intentionally wiped out for transplant, the swelling can’t resolve until his white blood cells start regenerating. And, without addressing the swelling, the doctors don’t feel comfortable removing the ventilator and therefore can’t turn down the sedation much more. This is about the time the doctors expect to see Ramón’s counts coming up, so do your white blood cell dance for encouragement.

We also know that, during any cardiac arrest, the brain often goes without its full supply of oxygen for a time. The neurologist says it’s too early to hypothesize what this might mean for Ramón specifically since he’s still sedated. Though they can do some basic imaging while under sedation, there’s not much v…

Day +12: A turtle's pace

Image
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 will be some unknowns. Yesterday around noon they started the awakening process, but it will happen gradually and safely, so it could be a number of days. 

Around this time last year, Ramón and I were hiking at Turtletown Falls in Tennessee, and cancer was nowhere in the mix. Yesterday I found myself Facetiming with my sedated husband. I reminded him how many people love him and are pulling for him, and I let him know that we’re not stopping. 
Although we’re in a holding pattern now, we should know more in the coming days. So, let’s keep rooting while Ramón is rebooting. 

Day +9: Cloud not-so-nine

Image
Today has been, by far, the scariest day of my life. This morning, at about 5:25, Ramón lost his airway, most likely due to swelling caused by an infection or allergic reaction. He went into cardiac arrest and ultimately had to be resuscitated. During the process, Ramón had to be intubated. He is now sedated and on a ventilator in the ICU. I was required to leave due to the ICU’s no visitor policy, but I was able to hold his hand before I left, and I am grasping onto that memory until I’m able to return.

As traumatic as the day has been, the updates I’ve received have been encouraging thus far. Though Ramón is expected to remain on the ventilator for several days, they’ve gradually (and successfully) moved him down to the lowest setting throughout the day. He is requiring very little heart support at this time, which is a drastic improvement from this morning. The doctors are very encouraged that the first 12 hours have gone as smoothly as they have.

They’ve cooled his body down (ther…

Day +8: Doggie doo

Image
Breaking news: Ramon still feels pretty crappy. His counts should start recovering in the next several days, we hope. I’d love for it to be tomorrow, but I don’t want to get greedy. Once Ramon’s white blood cells start coming in, we should see a lot of improvement. Bring ‘em on!

Today was tough, but thankfully Ramon got some much-needed rest. We did half of a lap, but Ramon just wasn’t up to it. I tried my best to keep myself busy, but I did have my moments of simply staring at him while feeling hopeless. It’s very difficult to watch a person suffer; it hurts all the way to my core.

I’ll end on three good things that happened today:

Our buddy from food services saw me walking in the hallway and gave me a packet of Jelly Bellies. There was no rhyme or reason; he was just spreading joy."One of Ramon’s colleagues posted photos of her children in Share Love, That’s All shirts. This particular family knows all too well how much cancer sucks, and it was uplifting to see them support a c…

Day +7: The sky's the limit

Image
Whew. Today has been up pretty high on the “hard” scale. A trip to the bathroom at 4:00 a.m. yielded a small battle scene. Ramón’s PICC (a long-term IV running to a large vein in his chest) got tangled up in his IV pole and managed to escape his arm entirely. Because his platelet count was so low and his blood was slow to clot, this resulted in three nurses cleaning up while a literal sandbag was placed on his arm to apply pressure and stop the bleeding. Then he got a unit of platelets. Rise and shine.

Ramón’s throat pain is still quite severe, and that has been our biggest challenge. Hiccups who? We’re still working to make him comfortable, but his symptoms will likely last until his white blood cell count starts to recover, enabling him to heal. It’s brutal to watch the torture he experiences merely swallowing water. Please let the healing come as quickly as possible.

Through his pain, Ramón and I managed to walk 32 laps together – about three miles. Around lap 13 or 14, we passed t…

Day +6: Swallowing pride

Image
Today has been a painful day for Ramón, but we’re ending the night on a pretty good note. Until we were thrown into this cancer fiasco, I’ll admit I didn’t know much about the details of chemo or radiation. However, both treatments aim to target rapidly dividing cells, ideally the cancerous kind. The body has many other types of rapidly dividing cells, though, like cells in hair follicles – hence hair loss – and the digestive tract.

Though we all know Ramón would have a luscious head of hair if not for the cancer, today he’s been struggling with the digestive tract side of things. His mouth and throat are very sore and painful, so we’ve been working to address that for most of the day. After what felt like many strikes, we’ve finally hit on some effective ways to keep Ramón comfortable. Since his white blood cell count is undetectable, this issue won’t resolve itself as quickly as we’d like. So, the goal is pain management until he can begin healing on his own.


Despite excruciating ag…

Day +5: Window of opportunity

Image
It’s been a while since I’ve said this, but we had a good day! Though we’ve had glimpses throughout the days, I can officially say that today, as a whole, was good. The highlights include fewer bouts of extreme hiccups, being fever free the entire day, and walking a whopping 20 laps – a vast improvement from yesterday’s three.

Ramón started two planned immunosuppressants today, and we didn’t notice any adverse reactions. He’ll be on one of the meds for about a month (CellCept) and the other for at least 100 days (Prograf). Ramón also started Neupogen injections, which should boost his immune system. It’s an interesting shift because now, instead of actively trying to fight leukemia, the goal is to make sure the cells play nice. The most common post-transplant complication is graft versus host disease (GVHD), a condition where the new cells accidentally start attacking the recipient's healthy cells. Let’s hope that, before we know it, all the cells are singing kumbaya in unison – m…

Day +4: Toci Tuesday

Image
Do you want the good news or bad news first? Let's go with bad so we can end on a positive note. Last night was a total trainwreck. Ramón ended up running 106-107F fevers that he simply couldn't shake. Actually, he was shaking a lot, yet the fevers persisted.

Next, Ramón's blood pressure dropped to 80/40 and his heart rate skyrocketed to 142 (he was asleep, might I add). Nothing indicated he had an infection driving the fevers. After some phone calls and powwows, the doctors ended up giving him an immunosuppressant called Tocilizumab. They determined his symptoms were a result of cytokine release syndrome (CRS), which is apparently common in haploidentical transplants like his. (Fun fact: Just the other day I read an article about Tocilizumab being used in COVID-19 patients.)

So now to the good news! After taking the immunosuppressant, he's been fever-free all day. The hiccups are another story, but we're slowly eliminating his sources of discomfort. Ramón finished…

Day +3: Much more cowbell

Image
First, let me disclose that this photo is the first we took post-transplant on April 10. It looks much less hot-messish than anything I could have documented from today.

I'll keep it short because I am majorly sleep deprived, but Ramón's fever escalated throughout the night, topping out at 106.9F. I didn't even know that was possible, but it is. He's been in the 106- point-something arena many times today.

There was a period this morning when Ramón was feeling really well. We did seven laps before noon, which was great. When I went into the hallway solo, the nurses whispered to me about his lack of hiccups; we were all so excited!

So, naturally, we reentered Hiccuptown around 1:00 this afternoon, and Ramón hiccupped every four seconds for more than four hours. My heart broke because even the hiccups sounded exhausted. Finally, between 5:00 and 5:30 p.m., they stopped! It was a joyous time, but they've now been back for more than an hour. The doctors are still tryi…

Day +2: A hare better

Image
Today was better than yesterday in that Ramón's nausea was mostly kept at bay. We haven't yet figured out how to contain these rowdy hiccups, but he's had some stints without them, so let's hope those become more frequent. Ramón's on a few different medications that should help, but the doctor said the hiccups would pass and would just be "damn annoying" (his words) in the meantime.

We did just shy of 12 laps today, so that was an improvement. As we hiccupped down the halls, Ramón received a few southern condolences: "bless your heart" and "poor thing." But we avoided any near run-ins since everyone could hear us approaching.

Ramón has been running a fever, so they started him on an IV antibiotic to be safe. He got up to 103F today, but he's down to 100F now. The nurse said this was common and she'd be surprised if he wasn't running a fever. We're just hoping it breaks soon so he's more comfortable.

Tomorrow morning…

Day +1: What the hiccup?

Image
Today is a good day in that it has a plus sign in front of it. Hooray! Given COVID-19 and the havoc it's wreaking on our healthcare system, we were anxious leading up to the transplant date, knowing that the landscape was changing day by day. But we're here, the transplant is done, and Ramón's new cells are working to make themselves at home. Change into your comfiest sweatpants, cells; you're here to stay!

Now, for the not-so-sunshiny part: it has been a rough day for Ramón. He's been fighting nausea most of the day, and we haven't yet figured out the perfect medication combo to keep it under control. Ramón also has frequent bouts of impressively loud and robust hiccups, so that's causing discomfort as well. During some of his better moments, we've walked six hallway laps. I'm hoping we get a few more in tonight.

We knew this was going to be tough, and my goal for tomorrow is to be more proactive in managing Ramón's side effects. To put it pla…

One sunset at a time

Image
It’s our third night in the hospital, and we just witnessed the best sunset so far – a Fight Like Mike sunset. Throughout Ramón’s cancer treatment, I’ve shared the story of our friends Lindsey and Mike and their efforts to Share Love, That’s All. Last Sunday, after valiantly combating leukemia for four years, Mike peacefully passed away in his sleep. You can read more about Mike’s life here. Although we are admittedly sad, we continue to be inspired by him, especially as we venture into the unfamiliar world of transplant.

It’s day -5, which means transplant is a mere five days away. Ramón has one more dose of chemo tonight, and tomorrow he begins his first of four days of total body irradiation twice daily. We don’t yet know how he’ll respond to this, so send some love his way. We’re hoping for as few side effects as possible before Friday’s transplant.

All we need now is your positivity! An amazing friend is staying with the dogs at our house, so they’re all taken care of for the mo…

Palm of her hand

Image
We’ve had a productive week in isolation. Ramón’s sister, YuSun, arrived in Atlanta on Monday night before heading to Emory on Tuesday for a full day of pre-transplant visits. With each needle stick (Sibling voodoo?), YuSun remained faithful and is now eating a very strict diet – in quarantine – until cell collection a week from today.

So, as Ramón sits on his throne as the Pancake King, his sister is force-feeding herself broccoli, bananas, and peanuts (Oh my!). She’s also required to consume 8000mg of calcium a day, which is the equivalent of 26 glasses of milk. Please send YuSun strength as she prepares her body for stem cell collection. Though the food requirements don’t exactly make me salivate, I hope YuSun takes comfort knowing that, post-transplant, she’ll have Ramón eating from the palm of her hand.

Four words to cherish

Image
Four words to cherish in the world of cancer: We got good news! Ramón’s bone marrow biopsy shows that we’re ready to head to stem cell transplant. Though some details are still up in the air, we know that Ramón’s sister, YuSun, will be his donor. YuSun is a half match, but she’s 100% committed to helping out her “little” brother.

We’re back at home with the dogs until Ramón is readmitted for transplant in the next few weeks. The transplant process is very intense, but we’re up for the challenge. Please keep YuSun top of mind as she travels from Michigan to Georgia in the coming days to deliver Ramón’s new blood formation system. Given the importance of staying healthy, she’s driving to Atlanta and staying until her cells are collected for transplant. Send YuSun (and her family who will be missing her!) good vibes in the weeks to come.

I’m keeping this short because we don’t know all the answers and, even if we did, we’re doing our best to live in the now. We’re grateful to deliver th…

Our lucky day?

Image
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 insensible people in the real world refer to significant loss of life as a political stunt or media hype. Happy St. Patrick’s Day! Do I sound festive or what?

This round of treatment has been difficult for Ramón, particularly due to debilitating headaches. After about 2-3 weeks of helplessly watching him endure pain, we think we’ve finally hit on the right combination of medications to keep it under control. His counts have been slowly trending up, so we’re grateful for that. Which brings me to today’s request…

If it crosses your mind between about 2:00 and 3:00 p.m. ET, please bombard us with positive energy. Ramón will be getting a bone marrow biopsy, which will dictate the pla…

Keeping it ill

Image
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 it sucks when life doesn’t go according to plan. Then there’s the person whose decreasing 401(k) is causing more affliction than illness ever could. And lest we forget the person who has enough hand sanitizer to fill a kiddie pool.

The inundation of information is overwhelming, yes, and some media outlets are churning out stories for the heck of it. “The flu kills people every year, and we’re not freaking out about that.” Actually, some of us have been. When flu season peaks, I am constantly mindful of the fact that the flu does not mix well with cystic fibrosis. Also, I get the flu vaccine the moment it comes out – like I’m 15 years old waiting in line to buy NSYN…

twenty is plenty

Image
Well, well, well … It’s hospital day 20. It’s not Ramón’s best day, but we’re making the best of every day. When I’m faced with anxiety-provoking situations, I try to apply logic to make the uncertainty disappear. For example, I have been replaying last May’s induction chemotherapy, trying to remember what happened on what day, thinking it will be an indicator of how things go this time. I am wrong day after day. I want to accept that there is no making sense of cancer, but the detective in me still makes fruitless attempts.

Though I don’t know how much longer we’ll be here, I know that we should be able to go home (with many outpatient clinic visits) for several weeks leading up to Ramón’s transplant. Right now he’s tentatively scheduled to be admitted early to mid-April for transplant, but there are so many moving parts that I’m not getting too attached to any specific dates.

There are still tests galore before the transplant is officially green-lighted. For one, Ramón will have an…

Day 300

Image
We made it to day 300! Sometimes it’s still hard for me to believe Ramón was diagnosed with leukemia last May. It’s even more difficult to believe that, after about nine months in remission, it occasionally feels like we’re back where we started. But, on the bright side, we’ve had 300 love-laden, laughter-loaded, gratitude-packed days. When you’re living in a hospital and constantly reminded of life’s fragility, every moment takes on a deeper level of meaning.

As I typed that, a helicopter just flew overhead. It could be carrying a person or a vital organ; it might be on the way to get one. Whatever the case, it’s unlikely to be a joyride. Instead, the helicopter will likely determine someone’s future. It’s occasionally overwhelming to be surrounded by such significance, but, more often than not, it heightens life with a richness that’s challenging to describe.

Despite some discomfort here and there, Ramón is doing quite well. Right now he’s not getting any infusions. He finished che…

Enjoy the ride

Image
It’s hard to believe we are where we are. Last Sunday we were near Blue Ridge where Ramón kick-started the week by running up a mountain – no exaggeration. Then, on Monday morning, we sipped coffee while watching the sunrise from the comfort of a hot tub, soaking in the glorious moment unfolding before us. Then, after returning home and getting groceries for the week, we received the phone call that would turn life upside down once again. Ramón immediately turned on his speaker phone, and I knew something was wrong the moment I heard the doctor’s voice. Her typically calm demeanor carried a twinge of dread, and then she asked, “Are you at home?” At that moment, I was certain I didn’t want to hear what was coming.

So, that’s what brings us back to the Emory tower we came to know all too well last year. In some ways it feels surreal to be here, and in other ways it's as though we never left. As we drove here on Wednesday morning, we realized how grateful we were that we hadn’t spen…

Putting the dent in President's Day

Image
Yesterday started off like your typical day: Ramón and I were evaluating which of our dogs would have the most success on American Ninja Warrior. By the end of the day, however, we were discussing where the dogs should go for the next month or so while we’re in the hospital. You read that correctly.

I know many of you are probably thinking, ‘Wait, didn’t he just run a half-marathon?’ Yes, he did. In fact, after getting off the shocking phone call with the doctor last night, it didn’t take long for him to have an epiphany: “I could have gotten a much better time if I didn’t have cancer.”

On February 10, Ramón had a routine bone marrow biopsy as part of the AML monitoring phase. By Friday, the doctors knew that he’d relapsed. Rather than telling us on Valentine’s Day – as we shared a romantic dinner from the Wendy’s drive-thru – the doctor wanted to wait until Monday. Just to think … Ramón was initially diagnosed on his birthday and could have been re-diagnosed on Valentine’s Day. I gu…

Taking it in stride

Image
Yesterday Ramón completed a half-marathon that he’s been training for since his counts recovered following his last round of chemo. Younger, pre-cancer Ramón ran half-marathons whenever he pleased with little to no preparation whatsoever. He’s always been quite athletic, and we have ongoing debates about which professional athletes he thinks he could beat in a 40-yard dash. Ramón also claims that, if he had known the rules of football when he played in high school, he would have been very talented. Yes, he played high school football despite not knowing how downs worked.

After walking through the emergency room doors on May 7, Ramón hadn’t set foot outside the confines of the hospital except for the ambulance ride transferring him from one hospital to another. After getting clearance to come off the continuous infusions, he was excited to be freed from his IV pole, which he called his “ball and chain.” On May 22, Ramón was feeling pretty good and wanted to walk to the cafeteria (Imagi…