Posts

Showing posts from 2019

Wear your seatbelt

Image
One of these guys enjoys licking plates in the dishwasher, and the other one has a bone marrow biopsy tomorrow. When we last saw one of Ramon’s hematologists, I asked him if there was anything Ramon could or should do to potentially improve the outcome of the next biopsy. His answer was basically no, then he added, “Wear your seatbelt.” And that sums up cancer, literally and figuratively. The results will take some time, but let’s hope for a smooth procedure tomorrow – and that they still have the cookies Ramon said were “dominating his life” as he came out of sedation last time.

The last several weeks have been a welcomed change of pace. As Ramon’s body has recovered from the five rounds of chemo, he’s felt much better than he has in a long time. We’ve been jogging almost every morning, including two days that it was in the 20s, which was downright insane. We hung up some blinds, and nobody got hurt physically or emotionally. Ramon’s even been tackling yard projects while I sit insi…

tiny kindnesses

We watched a movie, Paterson, the other night, and the main character was a poet. It got me thinking about how much I used to love writing poetry when I was younger. That being said, I'm about to attempt to write a little who-knows-what-form-this-will-take poem.


tiny kindnesses
a smile, a wave, a hi met with eyes
thanks, of course, thinking of you guys
listen closely as though time is endless
wrapped in a hug, arms fully extended
a card, thumbs up, sending love your way
hold the door open, have a nice day
of the things we do some of the most timeless
are the why-just-because, tiny acts of kindness


This poem is dedicated to the exterminator who checked our house for critters today. We got to talking after he finished, and it was one of those feel-good chats where two people were fully present. We talked Falcons and chemo and hardwood floors and humility. Thank you, Bill.

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 Power of Now. As I was reading last weekend, I had one of those epiphanies that made so much sense that I wish I could time travel and experience it 15 years ago. I realize that’s a little ironic given that the book is about now. Anyway, it reads:

You can always cope with the present moment, but you cannot cope with something that is only a mind projection – you cannot cope with the future. 

In the moments I’m at my most vulnerable, I have almost always been attempting to cope with something anticipatory – something my mind has imagined that could be anywhere from thirty minutes to thirty years in the future. They may be very plausible possibilities, or they may be real…

The Straight and Marrow

Image
You know how sometimes things work out perfectly with no loose ends and complete closure, like a beautifully wrapped gift with a bow on top? And other times you cut the wrapping paper just a tad small and are too stubborn to waste it, so you begin piecing together a patchwork of paper to hide the gaps that show what’s inside? Then, next thing you know, the present looks more like papier-mâché than anything, but you feel like you invested way too much time in it, so you decide to give it as-is and tell yourself the person is an ungrateful punk if the hideously wrapped box detracts from what’s inside?

Well, we saw the hematologist/oncologist today, and let’s just say the information we received wasn’t wrapped by a professional at the mall who uses double-sided tape. Instead, we got news that was more fragmented than we’d like, but we’re thankful nonetheless. Ramon’s recent bone marrow biopsy showed some remaining abnormalities, but nothing too alarming. He’ll have another biopsy in a mo…

Wait no more

Image
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 of the cystic fibrosis population. Yet, as someone grateful enough to have been in the study for it, I knew that it simply didn’t cooperate with my liver.

“Your liver looks perfect,” the hepatologist said after reviewing all the follow-up tests done to try to determine the reason for my elevated liver enzymes. “There are no underlying issues that could have caused this; it’s the drug.” As the doctor delivered the news, a masked, immunocompromised Ramon sat across from me, halfway through his first round of outpatient chemo. As I looked down on this situation from above, I thought to myself, 'This is kind of hilarious. Even a sitcom writer would know it's just too far-fetched to make both of us sic…

Live Oak

Image
I recently borrowed a memoir from the local library. It caught my eye instantly because it was called Marrow, a word that entered our vocabulary uninvited in May – without even a gentle knock. The book’s author, Elizabeth Lesser, is a perfect match for her sister who needs a bone marrow transplant. The sisters want to have the best possible chance for transplant success, so they quest to understand each other – and themselves. Much more than a book about a bone marrow transplant, it’s a book about love, about soul, and about life. Though I have only a few chapters left, I am reading as slowly as possible because I don’t want it to end.

I keep thinking about a passage from the book, so I wanted to share it. There are so many amazing parts that it feels almost criminal sharing just one, but I’m a little rebellious, so here goes:


We come into the world a potent little acorn, a distillation of the oak we were put here to become. The ego fears it is less than others, or it strives to be be…

It's just a game. But I still hurt.

Image
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 third) on October 11. However, a week before surgery, October 4, I got a phone call from the doctor informing me that I’d cultured a new, difficult-to-treat bug. For those who aren’t very cystic fibrosis savvy, this meant that there was a new type of infection in my lungs: one that I’d heard about – and not in a good way. The doctor now wanted me admitted to the hospital several days prior to surgery to get a handle on this infection. There was a problem, though; I had tickets to see the Braves vs. Giants in the NLDS playoffs on 10/10/10 – what promised to be a lucky day.

I reached out to the surgeon’s office to see if there was any possible way to reschedule surgery. I’m looking at the…

Back in the garden

Image
We saw the hematologist/oncologist on Monday and stopped by the healing garden. Though I believe in the garden's restorative powers, they're apparently not strong enough to fix someone's refusal to cooperate for photos. But hey... I'll settle for questionable smiles if the garden focuses on the leukemia. Despite our brief hospitalization last week/weekend, Ramon is feeling better every day; we're extremely grateful for that.

Next up on the agenda is a bone marrow biopsy, which is scheduled for next week. A big part of me was hesitant to share this because it is a very significant (and anxiety-provoking) test. Then I remembered it is a very significant (and anxiety-provoking) test, and we could use your support. So, in the coming days (and weeks as we await results), muster up some positive energy for us. We will be sure to update you all when the time is right.

Most importantly, and the real reason for my post, is that I want to shed light on someone else's fi…

Save Corrina

It has been 149 days since Ramon's leukemia diagnosis and 148 days since we learned the type: AML. On the exact same day, May 8, 2019, across the country in California, a single mother, Corrina Santacruz, was given the same life-changing news. I stumbled upon her story on Instagram and have been following her parallel journey. Corrina is now in need of a bone marrow transplant, and her ethnicity has made it difficult for her to find a match. Check out this NBC Palm Springs article that shares her story: https://nbcpalmsprings.com/2019/09/29/mother-fighting-leukemia-with-special-needs-child-pleads-community-to-be-her-match/.

White people have a 77% chance of finding a donor on the Be the Match registry. However, these percentages are much lower for people of other ethnic backgrounds. Latinos make up only 11% of the Be the Match registry, hence Corrina's inability to find a match. It's as easy as a swab of the cheek, and it could truly save someone's life. Please conside…

A tribute to Grocery Bag Lady

When we moved to our current neighborhood, we slowly got a feel for our surroundings. A certain neighbor sits on his front steps every morning, getting some fresh air. Another neighbor tends to have people over to play basketball on Sunday evenings. Yet another neighbor often sits outside with her dogs, yelling at them as they bark at passers-by. And then there's the lady with the grocery bag.

I first noticed Grocery Bag Lady when she walked by our house. Since there are several stores in walking distance, I assumed she was returning home from an errand run. However, the next time I saw her, she was headed in the opposite direction, again carrying a grocery bag. The mystery was deepening.

One day I saw Grocery Bag Lady gardening in front of her adorable yellow house – one of my favorite homes in the neighborhood. I was now even more perplexed because, each time I’d seen her, she was further in the neighborhood than her house was, so my errand-running theories simply couldn’t be co…

A room with a view

Image
We're not where we planned to wake up today, but this sunrise helped immensely. Ramon was admitted to the hospital yesterday after running a fever. They don't believe it's anything serious, but we have to be extra vigilant while his immune system is at its lowest. Ramon's spirits are high, his appetite is hearty (minus the "omelet" he had for breakfast), and he's hoping to get out of here at the first opportunity.


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 my past reality as my physical limitations change. I grieve the friends I’ve lost to this disease (and others). I also grieve the strangers I’ve lost to this disease. But, most recently, this year I’ve been grieving the loss of the hope I had that change was on the horizon for me.
Last fall, I was fortunate to be selected for an exciting clinical trial. This was a first-of-its-kind medication for my genetic mutation, and preliminary data showed that it could and should be life-changing – a drug that would truly transform my world. Within weeks of starting, I was certain (and hoping) that I was on the placebo because I didn’t notice any change. For those 24 weeks, I fel…

Yellow door

Image
Earlier this year, we decided to paint the laundry room door a bright and cheerful yellow. Like most household projects, it ended up becoming way more complicated than originally anticipated. I sanded and scraped so much that my FitBit recognized it as outdoor cycling. Finally, on April 30, we installed the door and realized that it was (and had been) upside down. I texted a photo to a friend, requesting help coming up with a clever reason the door was upside down. We threw out a few ideas, but nothing stuck. 'It will come to me eventually,' I thought.
Today I saw little Benny in the doorway and took a photo. I then remembered that the door was upside down, a thought that hadn't crossed my mind in a while. In that moment, I realized that, exactly a week after installing the door, we received Ramon's cancer diagnosis. With that, I present to you the meaning of the door...
Yellow represents optimism and joy, but in some instances caution. When something is referred to a…

Oh my memoir

Image
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 class also taught me several life takeaways. Y'all ready for this? *cue Jock Jams*

When I walked into the first session, I was a little anxious. Upon scanning the room, I saw people of various ages and backgrounds, none of whom appeared to "match" me, but I knew we had one thing in common: an interest in writing our story. However, as the weeks went on and people shared their writings, I realized that I could relate to every single person in the room. It reminded me that, if we dig beyond the surface, we'll unearth connections in [maybe previously] unexpected places. Sometimes our heart perceives things our eyes can't see.

We also discussed several different writing pr…

Gosh, he's growing up

Image
It's crazy how time flies!

The gift of time

Image
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 we were signing up for only one major illness. But life has a funny way of surprising you, huh? Ramon andI knew we were a good team before, but his cancer has italicized, underlined, and highlighted that belief. Our Sundays consist of going over the coming week's appointments between naps, our kitchen is basically a pharmacy, and one of us utters the words "I'm tired" hourly, at least. All things considered, we've found a way to have fun throughout [most of] this wild ride. Even a dumpster fire can be beautiful if viewed from the right angle! https://www.cff.org/CF-Community-Blog/Posts/2016/Asking-for-the-Gift-of-Time/


Share Love, That's All

Image
Tomorrow marks three months since Ramon's cancer diagnosis -- uh, I mean, birthday. A few days after Ramon's diagnosis, surprise visitors arrived at the hospital: Lindsey and Mike. We hadn't met them before, but a mutual friend linked us up because Mike, too, had been diagnosed with leukemia three years prior. I missed their visit (because I was at the doctor, surprise!), but it lifted Ramon's spirits. I now know that, after cheerfully visiting Ramon in the morning, their nighttime plans were vastly different; the evening included a memorial service for a friend who'd lost her battle with leukemia. Imagine the heart and strength it must have taken to spread love on a day of such sorrow. Yet it's what they did and what they continue to do. Lindsey and Mike created a nonprofit, Share Love, That's All, with the goal of paying love forward to those who need it the most. At this moment in time, however, they are deserving of the same love they have committed to…

It's the cliiiiiiiimb

Image
At this time last year, we were enjoying the picturesque Colorado Rockies, and now we find ourselves facing a different kind of mountain. Ramon was admitted to the hospital on Wednesday after spiking a 104F fever (Go big and don't go home!). Following a multitude of tests, we're still not sure of the source, but he's been fever-less for more than 24 hours now. For Ramon's protection, we can't have visitors, but we are gladly accepting well wishes from afar. Thanks for helping carry the load as we continue climbing!


Perspective

Image
Sweet Noodle Beagle's eyes say it all. It's day 77, though if you told us it was day 177, we'd believe you. The novelty of Ramon's leukemia diagnosis has worn off, and we've grown accustomed to our new normal -- one that includes constant trips back and forth to Emory, a multitude of naps, and unpredictability from one day to the next. Though we're going through the motions, I find that the sky is bluer, the flowers are prettier, and the dog cuddles are more heartfelt than ever before. When we're at Winship for infusions, we're surrounded by people who are experiencing some of the worst days of their lives. Yet these tired-of-fighting people have enough energy reserved to treat everyone with love. Or is that the easier thing to do anyways? Aside from one instance where a man answered his phone on speakerphone and angrily yelled "DOES ANYONE IN YOUR OFFICE SPEAK ENGLISH?" to a lady who was indeed speaking English (albeit with an accent), I'…

Outpatient Chemo Round 2: Day 1

Image
We're exhausted, so I'll let Ramon's shirt do the talking; it was gifted to us by an admirable couple fighting a similar battle. We're channeling our energy in the direction of love and hope you are, too. 💙 That's all.




One of one

Image
We’re 50 days into this cancer thing. It’s still somewhat surreal to type that, yet it’s also difficult to remember life before the diagnosis. Thankfully there’s not much to report; Ramon’s treatment has been complication-free thus far, and we hope to keep it that way. He received platelets on Monday, and he might be due up for some blood tomorrow. (Side note: Many people have inquired about donating blood or platelets. If you’re interested and/or able, please take a look at www.redcross.org,www.americasblood.org, or www.aabb.org to donate. Also, while you’re at it, join the bone marrow registry at www.bethematch.org. You could be someone’s hero. You’re already my hero, FYI.)

I keep thinking about something the hematologist/oncologist said during our first week in the hospital. Naturally, upon learning of a diagnosis, people’s minds venture to the prognosis – AKA survival rates. Even though I know first-hand how quickly statistics can make you feel defeated, you can bet your bottom dol…

Fighting traffic (and cancer)

Image
We're fighting cancer AND traffic! After some slight rerouting, Ramon is finished with the first round of outpatient chemo infusions. His counts are dropping, as intended, so he'll likely need a blood transfusion later this week. Today is day 8 of this chemo cycle, and his white blood cells, red blood cells, and platelets should bottom out around day 12, 13, or 14. If the next few weeks are event-free, Ramon should be ready to start the next round on or around July 8. Keep the good vibes coming as the chemo does its thang!


#BoneMarrowMonday

Image
Is #ManCrushMonday still a thing? Regardlesss, it's also #BoneMarrowMonday, because we've got news. Today we saw the oncologost, and Ramon's bone marrow is in remission! So, what does this mean?
- Induction chemo was successful! It did what the doctors hoped it would do, and Ramon's bone marrow biopsy looked normal. However, since only a sample was examined, there are most likely still leukemia cells in his body. We need to stop those cells from multiplying, hence the latest chapter of this book: consolidation chemo.
- Today Ramon got his first dose of outpatient consolidation chemo, and he'll have his second dose at 8 tonight. (He's wearing a manbag holding his IV pump, by the way. He's doing more of a strut than a walk.) This will be repeated on Wednesday and Friday of this week. Next Monday, he'll get a second chemo drug added to the mix. We'll then wait 21-28 days while the chemo wipes out his immume system and [hopefully] any additional leukemia…

Home sweet home

Image
After leaving the house at 3:50 p.m. on Tuesday, May 7, guess who's finally home! Yesterday Ramon had a repeat bone marrow biopsy, and we'll learn those results on Monday. If all goes as expected, he'll begin outpatient chemo next week. Although coming home is a huge milestone, there's still quite a long road ahead of us. We'll share more as we learn it, but Ramon is handling this all with incredible strength and humor. Coming out of sedation yesterday (pictured), Ramon kept repeating, "I feel perfectly fine." I'd acknowledge him, then he'd say again, "I feel perfectly fine." I'd tell him I was glad and he'd assure me, "I feel perfectly fine." Finally I told him he must be feeling more than fine because he kept repeating himself. He then proceeded to get up and do field sobriety tests. Oh, Ramon. Thank you all for your ongoing support. Whatever you're doing, it's working! We're exhausted, but we feel surrou…

Making this our bench

Image
TWENTY+
Three weeks ago we were stepping into unfamiliar places, and now we're familiar faces. Though we'd love to be home, we've found that 20 days is the hospitalization sweet spot. x To make an iced mocha drink, get up at 6ish and brew a half-cup of coffee. Then, fill a cup with ice from the machine. Proceed to call the meal line and request a chocolate milk. While waiting on the chocolate milk to arrive, your coffee will cool. On desperate mornings, drink a hot coffee to endure the 30-minute test in patience. Once the chocolate milk arrives, combine all ingredients. BOOM. Optional: Still get Starbucks within the next four hours. x Did you know that, after 20 consecutive days in the hospital, you get complimentary valet parking? Strangely, after investing a small fortune in parking, we don't know if we're ready to go home and forfeit this hard-earned privilege. To be continued... x You officially reach the point of no shame. This means there's no limit on ho…

Project: Cancer

Image
We're making progress on Project: Cancer, and we hope the countdown-to-home can begin soon. Let's wish for an uneventful next five days as Ramon's immune system is at its lowest. Our spirits, however, remain high!




Donate blood, platelets and kindness

Image
How can you help? That's the million-dollar question! For all practical purposes, we're taken care of, and we are grateful for that. We've got countless food options, tons of entertainment, an outpouring of love, and our attitudes are as good as can be (except when we have to constantly re-authenticate ourselves on the hospital's wireless network). At this time, our biggest need is rest. The chemo has wiped Ramon out, as expected, and this hospital couch/bed is about as comfortable as I imagine glamping to be. While we focus on loafing around, here are a few things you can do to help out: - If you're able, donate blood or platelets, join the bone marrow registry, sign up to be an organ donor, etc. Ramon is pictured here receiving platelets (or frozen lemonade) again, and he'll continue to have these (and blood) transfusions as often as needed. There are many people fighting their own health battles, and giving a bit of yourself might mean giving someone new li…

Wiggin' out

Image
No caption necessary.

What a week can do

Image
At this time last week, we had no idea what was coming. We were contemplating birthday dinner options when the doctor called and said to go to the ER -- that it was critical. At 7:12 p.m., I texted, "This is not looking good." Here we are, one cancer diagnosis and a million thoughtful gestures later. "You have an incredible support system," a nurse said the other day, yet she has only witnessed a fraction of your kindness. Thank you for helping us find the sunshine; it's always there. All we need at this time is for you to keep sending the beams our direction!


Buckle up, folks

Image
We're amazed by the outpouring of love we've received over the past several days. We hope to thank everyone individually, but, in the meantime, just know we appreciate you. The chemo is doing its job, and Ramon needs rest now more than ever. We'd like to hold on visitors and focus on healing. As we continue on this journey, here's a picture from one of our favorite adventures: a cross-country RV trip last summer. Here's to the road ahead! We won't cover 3,000 miles, but we'll walk the heck out of some laps in the hospital hallway.

Happy birth-of-a-new-chapter day!

Image
What began as Ramon's birthday ended as the day he was diagnosed with cancer. While we knew May 7, 2019, would be a special day, it became *extra* special extra quickly. Here's what we know so far:

- Ramon has Acute Myeloid Leukemia, cancer of the blood/bone marrow
- Initial chemo (starting May 9) will involve 30 days of inpatient care at Emory University Hospital Tower (Hematology/Oncology unit)
- What comes next will be determined by additional tests
- Given his age and otherwise good health, we feel optimistic

We're still fundraising for the Cystic Fibrosis Foundation (http://fightcf.cff.org/goto/drew) because, despite his valiant efforts, Ramon isn't gonna outshine CF Awareness Month. (You all would be appalled by the things we're saying as we try to out-sick each other; let's hope humor helps!)

Note: While flowers are lovely, they are not allowed here due to the compromised immune systems of many of the patients. We also need to keep visitors to a minimum so as …