Like many others, I often find myself at this time of year with one foot firmly planted in the old year and the other dashing into the new. Reflection worksheets, vision boards and journals filled with goals and dreams litter both my floors and my mental landscape as I aim to find more meaning in the year that lies before me.
Together, we will all cross the threshold from 2024 to 2025 in less than 36 hours, but for me, the transition into the new year is so incredibly different this go-around, and dare I say, filled with more exhilarating possibilities than any previous new year.
2025 will be literally a new year when I will physically become a new me as I will undergo a peripheral blood stem cell transplant to eradicate the leukemia growing inside of my bones. My donor’s cells will help my body grow an entire new immune system, and with it, a second chance at life. New Year, New Me indeed!
Getting diagnosed with cancer was certainly not on my 2024 bingo card, but I’m still standing after getting walloped by this harsh reality. I haven’t lost hope and I’ve discovered a new-found appreciation for appreciating the present moment and experiencing it with all of my senses. If you missed my previous post announcing the diagnosis, you can read that here.
It’s been only a little over two months since I was diagnosed, and I am still baffled at how quickly things have progressed. Back in April, I knew something was off when I received wonky blood test results, and in rereading my journals from this year, I noted from as far back as early March how the fatigue I felt was unbelievably overwhelming and quite different from my Lupus fatigue. I coped with unexplained bruising and illness as my blood counts continued to spiral in the wrong direction during the summer and made an appointment to see a hematologist in late 2024.
Longtime followers know I have a unique relationship with the universe, and this journey has been no exception. A cellulitis infection landed me in the hospital in early October, which led me to the right team of doctors and to my very unexpected cancer diagnosis. My hematologist oncologists and their staff are rock stars and so freaking amazing, and I know I am in the right hands. That cellulitis infection saved my life, because if the cancer went undetected for much longer, or if I had waited for that original appointment, it would have been too late to be treated and I’d be facing a very different narrative right now.
That same universe also matched me with numerous 100% stem cell donors, with my primary donor on-board and on-schedule to save my life. All I know about the donor is that it is a 24-year-old male, and if he gives permission, I can contact him after a year, which I intend to do.
I was surprised to learn that I was born with several genetic mutations in my DNA that play a role in my cancer and how fast it will spread. While the chemotherapy medication I took for my Lupus for over 8 years was probably a factor in unlocking the cancer, this would have happened to me later in life even without taking those meds. One of the mutations, TP53, is extremely concerning and lends itself to a very poor prognosis, which is why my medical team moved my transplant from March to early January so that the cells inside me have a shorter amount of time to explode into acute myeloid leukemia. Said cells have notably multiplied since October, and since transplant is the only cure, my team does not want to waste any time.
Still, though, it’s been difficult for me to come to terms with the fact it’s ME. It’s ME who has this dreadful disease, one which is so extremely complicated and individualized based upon so many factors, and one that is, quite honestly, more often a death sentence than not, especially if transplant is not an option. I mean, I don’t want to play the victim here, but what the actual F? How can this be real? There are times when I scream into a pillow or burst into tears without warning, and I allow those emotions to have their say because they are sacred and authentic.
It’s humbling to have so many people, including my doctors, their staff, my donor, and many other people I never even met, rallying to save my life. MY LIFE, little old me who never really believed she was that worthy of anything. I also have an army of supporters behind me waving their “Jill” pennants in calls, texts, and messages, an army that is much larger than I ever would have expected and teeming with light, love, and strength. Little old me is abundantly grateful for seeing those pennants, hearing the cheers, and feeling the love.
One of my takeaways from the past few weeks is that control is an illusion. I’ve had to completely surrender myself to what is, instead of trying to control how I think things should be. That includes my body, my plans, my hopes and dreams, my daily routine and schedule, my hobbies and interests, my employment and responsibilities, teaching and writing, yoga and community, missing out on events and holidays, and so much more. I’ve had to relinquish control of everything, and while it’s been heavy, it’s also been strangely liberating. It’s like I am experiencing a lengthy time-out from the chaos of life to be reborn in a pleasing yet mystical calm.
A lot of people have been asking about what they can do to help me. Unfortunately, because this type of cancer, transplant, and recovery are so complicated with very strict nutritional and social guidelines, there’s not much anyone can do to help me, per se, but there are ways to help in general. Consider donating blood or platelets at a local blood drive. I’ve already received two blood transfusions and two platelet infusions this month, and I know I will be getting more throughout the transplant and recovery process. Your donation can help people like me who are in need of blood products. Also, consider registering to become a stem cell donor at the National Marrow Donor Program. It’s very easy to register, and you can literally save the life of someone just like me. Even if you aren’t qualified to donate, you can spread their message through your social media.
Worry is such a misspent emotion. It drains your energy, has zero benefits, and cannot change any outcome, so please don’t worry about me. I told my students that instead of worrying, find little moments of joy in each day and keep a log of them. Consider purchasing an inexpensive 2025 planner or calendar, and before going to bed each day, jot down little snippets of what brought you joy and/or perhaps something you are grateful for. I did this in 2024, and even on the roughest days when I struggled physically and mentally, I still found a spark of joy to scribble down. This practice has a positive effect on my mindset and helps sustain my inner peace especially in tumultuous times.
I most certainly didn’t ask for this journey, but it is my truth and I accept it. There’s nothing to be sorry about because I’ve got this, and quite honestly, there’s nothing you or I can do to change what will be. I’m channeling fellow mutant Wolverine’s badassery and fellow super soldier Captain America’s fortitude as I continue upon this path because I don’t have a choice. I have to walk it, and the only way out is through.
Don’t get me wrong, there have been plenty of bad moments with many more to come, but alongside the bad lies the good. Just as the light cannot exist without the dark, I can be angry while remaining hopeful. Joy is there, always lurking somewhere in the present moment, perhaps in the smile of a nurse, in the floating of a snowflake down from the clouds, in the text message from a friend, or in the blanket gifted by students that provides me comfort.
My hospital admit date is January 8, and the stem cell transplant is scheduled for January 14: my new “rebirthday.” 2025 is literally the year of ME, of rebirth and rebuilding ME, of saying yes to my new life and all that it has to offer. I am so excited to see where I am led.
As I wrote in my last post, I am the storm, dammit, and I am leukemia’s worst nightmare. LFG!
Thank you for joining me on my journey. I’m so glad you are here.
With light and love,
Jill
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“Cancer-cation Chronicles 001: A LITERAL New Year, New Me” was posted on jillocone.com on December 30, 2024. 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 my employers. Copyright 2024, Jill Ocone. All rights reserved. Contact Jill with reposting, licensing, and publishing inquiries using any of the links below.
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