I had a pretty great two years of remission. Maybe if I had known that I would only get two years I would have done things a little differently, but overall I can’t really complain.
I made a life with a woman I love and two cats that I adore, in a city that I’ve grown very fond of. I got to do work that was stress free and fun, with people I really liked. I traveled and ate and danced with friends new and old.
The stressors of everyday life seem so inconsequential now, just as they did when I was first diagnosed.
Here I am again, trying to buy more time to do the things that make life worth living. I’ll pay with my mental and physical fortitude, and those of my friends and family.
I am officially in remission. There is not one speck of disease left in my body. My doctor told us that this is the best possible chance I have of staying in remission.
What a sigh of relief.
These past 8 months have been some of the hardest of my life. Chemotherapy is no fucking joke. I have been left exhausted and broken, but confident that I can fight my way back to health.
I can’t express how grateful I am for all the support I’ve received since my diagnosis. All the late night hospital board game nights, all the Mario Kart and of course all the FOOD (hematologist approved, of course).
For the next few months I’ll be looking back on this time in my life, with a little perspective, and attempting to write about it, as well as thanking a few of the incredible people that went with me on this journey.
Here are just a few of the members of my beautiful support system:
Exactly 6 months ago today, I was diagnosed with leukemia. Tonight, I finished my last round of chemotherapy.
My fight isn’t over yet, but this feels like a huge sigh of relief. I grabbed my Lego Death Star, rang the “no more chemo” gong as hard as I could, and my primary nurse Amber wheeled me outside to my dad’s car.
I'm so thankful to the PCAs, doctors and especially the nurses of 15 James for being my cheerleaders and friends for the past 6 months. I couldn’t have asked for a better team.
My doctor, early July: "You'll likely lose a lot of weight during your treatment. So for right now, all calories are good calories! Eat as much as you can."
Me, early December and 20lbs heavier: "What the fuck"
I’ve heard so many platitudes since my diagnosis. Sentiments about staying positive and that I have my whole life ahead of me and that this will just be a bump in the road in a lifetime of happiness.
And I will dutifully agree, and parrot them back.
I will joke, “Oh, I’ve been worse.” (I have.)
I will nod my head solemnly. “So many others have it harder.” (They do.)
I will smile and tell you, “People have been great. My dad, my girlfriend, my friends, they’re amazing.” (They are.)
I will shrug. “It’s not the most fun thing I have ever done, but treatment is going well.” (It is.)
But I won’t tell you how hard it is. How sad I am. How scared I am. How tired I am. How sick I am. (I am.)
I’ve been at this for three months now. I’ve lost count of all the hospital beds, wheelchairs and miserable hours. (I have.)
And after all of this, it could just come back? (It could.)
For the past eight years my cousin @srtagis has been riding for Pelotonia in honor of her father, my uncle Marcelo. This year, she’s also riding for me. She’s coming all the way from Japan just two weeks before the ride. I’m so proud of her, just as I am every year. Pelotonia benefits the research being done at the James Cancer Hospital in Columbus, Ohio, where I am currently being treated. The James is one of the best cancer hospitals in the world, and I am receiving exceptional care. My team is amazing and I’m grateful for every one of them. My nurse practitioner, Andrea, bought me a peanut butter cookie after doing my bone marrow biopsy though, so she might be my favorite.
Please consider donating to Gisela’s ride! Every dollar helps. https://www.mypelotonia.org/riders_profile.jsp?MemberID=3838
Also, becoming a bone marrow donor is ridiculously easy. I did it not long ago (now I, uh, need to figure out how to get off the registry because they super don’t want my bone marrow now...)
Register with https://bethematch.org/. You’ll get a kit in the mail, you’ll swab your cheeks and send your kit back. It’s free. Chances are, you’ll never get called. But if you do, you can decide if you’d like to continue or not. If you do, you’ll do a really short outpatient procedure and maybe your hip will be a little sore but you’ll be back to normal in just a few days. It’s at no cost to you, and you’ll save a life. It might even be mine.
Of course you are, you just got back from Japan. You have jet lag.
Why have I been sweating so much in my sleep?
It’s really humid in Japan. In D.C, too. That’s not that weird.
Why do I bleed so much when I floss?
You didn’t do a great job at flossing while you were in Japan. Your gums are just a little sensitive.
I’ve been bruising really easily.
Probably just a vitamin B deficiency. Not a big deal. Eat more fish.
But I’ve been eating so much fish...
Shhh...
On Wednesday, July 5th, I went to my doctor. “You look tired,” she told me.
“Yeah, I didn’t sleep very well. You know, all the fireworks.”
“Oh sure, sure.”
We talked about the things I had been feeling. She seemed unconcerned.
“I’m sure it’s just all the traveling. You might be a little anemic too, but... we can do some blood work, just in case, if you want. I want to check your vitamin D levels anyway, so we can do it at the same time.”
I shrugged. “Whatever you think is best, I don’t mind.”
“Let’s do it. I’ll get your paperwork ready.”
Man, the site where the nurse took the blood work is still bleeding...
She probably blew the vein. Just put a new bandage.
On Thursday, I went to the dentist. I had never had any cavities before, but this time I left with a few fillings, and half my face totally numb. I checked my phone and saw that I had missed a few calls from a number that I did not recognize.
By the time I got home, the number had called two more times. I finally decided to answer, even though I was still drooling blood and slurring.
It was my doctor.
“I’m so sorry that I don’t have time to bring you into the office to tell you in person. But we don’t have time. Are you sitting down?”
I wasn’t. “Yesh.”
“You need to go to the James emergency room right now.”
Anyone who lives in Columbus or has grown up here knows exactly what the James is and what this means. “Auhh.”
“Your bloodwork suggests that you have leukemia.”
I sat down.
I got a post-it note and numbly wrote down words and numbers I didn’t understand. I called my girlfriend as I quickly shoved clothes into a bag, and then I left.
“No, I promise I’m not here for a stroke.” I chuckle-slurred when I walked up to the emergency room desk, pointing at my still drooping face. “I think I have cancer?”
The nurse blinked at me. “O-oh. Okay, let’s get you checked in...”
I have AML. It’s an aggressive form of leukemia, so we’re being similarly aggressive with treatment. I’ve got my powerline hooked up to a vein in my heart, I’ve done my first bone marrow biopsy (wOW that pull is no joke) and I’ve started chemotherapy.
I know I have a lot of things going for me. I’m young, I’m healthy, my heart is strong and I don’t have any infections. This could have been so, so much worse. I could have passed out in Japan. My doctor could have not done those labs.
The James Cancer Hospital is really one of the best places in the world. I have a great team that I like a lot. It’s not fun, to be sure, but hopefully it’ll just be a passing memory one day.
To celebrate my last night in Japan, and my birthday (that had passed by in a food poisoning haze) Gisela, Aarthi and I boarded a dinner boat and sailed around Tokyo Bay.
It was all you can eat, all you can drink, but you have to cook yourself on a grill. None of the people on the boat spoke English, and all the food was completely foreign to us.
Cue hilarious chaos.
Aarthi chop chop chops
We cute cousins (Picture by Aarthi)
Rainbow Bridge
My favorite picture of Aarthi
I try to not fuck up the noodles (Picture by Aarthi)
kaledo-art
snowghoul
gummygunk
dededos
discoholicmusic
jbbartram-illu