The days fly by, like untethered kites soaring in the azure sky, and I reach to grasp today’s ribbon-filled tail. Each streamer floats through my grip, but I cannot take hold of any of them. And so today drifts into yesterday, tomorrow becomes today, and the cycle continues.

In these days of isolation, it is not necessarily a negative if a calendar box dissolves quickly into the next, because for me, each day is a day closer to being whole again.

Today is Day +50 post stem cell transplant, and the past month has had its ups and downs. I posted on social media that the Epstein Barr virus (EB) lurking in my system since 10th grade reactivated a few weeks ago, which is common for transplant patients. Fun fact: I also had mono in 6th, 7th, and 9th grade, and chicken pox in 8th grade, all of which can return at any time because they are viruses and I currently have no immune system. Doctors are treating the EB with meds and hopefully it will find its merry way out of my system soon. The EB also added additional layers of fatigue and general blech to an already complicated recovery that includes hardly any energy or appetite and lots of brain fog and outpatient infusions.

I’m also experiencing skin rashes due to graft-versus-host-disease (GVHD). GVHD is when my donor’s cells view my body’s cells as a threat and attack them. GVHD most often presents itself in the first 100 days after transplant, but it can still occur years into the future. The rash is quite unattractive and some areas are itchy, but it is evidence my donor’s cells are overtaking mine and they will eventually eradicate any cancer cells lingering in my bone marrow. Go cells!

My doctors are pleased with my recovery progress and say I am ahead of the curve in some ways, but I must remain aware that it is common for hurdles to occur without warning. Starting at three months post-transplant, I’ll begin receiving childhood vaccinations again on the same schedule as a newborn baby. I still have no immunity as my system rebuilds, so I’ll remain in isolation for the time beging, which is a necessary challenge but  well worth the payoff of a second chance at life.

Recovery will still take months (and in some cases, years-I’m hoping for months), but Day +100 post transplant is a big milestone for stem cell transplant recipients as it is a turning point. By Day 100, stem cells have engrafted and started making new blood cells, and the risk of infection and serious side effects have greatly diminished. I am literally halfway there, as today is day +50, and I am living on a prayer…many prayers, to be honest. I thank you for your thoughts, kind words, and outpouring of support. I’m an extremely lucky human to be surrounded by such love and loud cheerleaders!

A few days ago, I woke up and felt more like myself and less like David Puddy, the character on Seinfeld who just sits and stares ahead most of the time. While I am still tired and giving my body rest when it needs rest, my appetite is slowly returning and my energy levels are improving. My focus and mental clarity has also perked up, so reading and journaling are coming easier. Maybe I will revisit a few writing projects that range from “ideas” to “halfway written-get off your ass and finish me” statuses, and develop some new yoga and writing offerings/programs for the future. I still need to clear some hurdles before I’m able to take outside walks, but that day is coming, and baseball is back! Watching the commericals for transplants and cancer awareness during the game breaks, however, really hits differently and much deeper this year.

My priorities have definitely shifted as I endure this life-changing chapter…getting handed the “you have a potentially fatal cancer that can only be cured by a stem cell transplant or you’ll be dead by June” card will do that. No matter if I feel like I was hit by a steam roller or a happy little butterfly flitting through the air, it’s a good day because I am alive. To quote actor Jeremy Renner, who survived a horrific near-fatal accident last year, “I won’t have a bad day for the rest of my life…there’s that gift.” 

One of the biggest imprints my yoga teacher training left upon me in indelible ink was that I no longer had to run away from myself. That mindset is my mantra, that and “Om.” I accept my truth, even when it’s something I wouldn’t have chosen…for instance, being diagnosed with one of the most complicated cancers out there. But what could or can I do to change it? Nothing. Absolutely nothing. The only way out is through, and there’s an abundance of good, love, light, and joy even along the darkest path. I just might have to look a little bit harder through life’s muck and be patient. It’s all there, and I am grateful for every sliver, no matter how large or small. The ordinary is truly extraordinary, as James Joyce advised so long ago, and I am STILL the storm.

So hold on, ready or not…I live for the fight when it’s all that I’ve got. Woah, I’m halfway there…livin on a prayer…

Today is a gift, and it will be a good day.

If you are looking to make a positive difference in this very upended, topsy turvey world we are currently living in…

• Please consider registering as a donor for the National Marrow Donor Program bone marrow registry, or help spread their word if you don’t meet the criteria.
• Please consider registering for a local blood and/or platelet drive. The need is real and your donation could help save the life of someone like me.
• Please consider supporting Amy’s Ray of Sunshine by providing get well cards that will go to patients like me. I received a box of cards and I open one a day until day +90.

Thank you for joining me on my journey. I’m so glad you are here.

With light and love,

Jill

Note:

“Cancer-cation Chronicles 004: Woah, I’m Halfway There (Kind Of…)” was posted on jillocone.com on March 5, 2025. Artificial Intelligence (AI) was not used at all in creating or writing this post. Views and opinions expressed in this post are solely those of the writer, who was not endorsed or compensated in any manner by any entity; views do not represent any of Jill Ocone’s employers. Copyright 2025, Jill Ocone. All rights reserved. Contact Jill for reposting, licensing, and publishing inquiries using any of the links below.