“Wow, it’s been a whole year since your bone marrow transplant? That went by quickly, huh?” Several people said this to me, this week.
This year was, without a doubt, the slowest year of my life.
I took it one day at a time, because A) that’s how time works (thank you, Hannibal Burress), and B) staying in the present moment was the only way to maintain any sense of calm. Crisis forces you into the moment, which is a very good thing.
Yesterday, at my 12-month appointment, I received my first set of vaccines (yup, since I have the immune system of a baby, I need to get vaccinated all over again). I sat in the Cancer Center, a completely different person than the one from my previous visits. Having put 366 fully-conscious days in between myself and my transplant, I finally felt some distance. From the fear, the trauma, and the stress that I’ve dealt with every day.
It feels amazing. Except when it doesn’t. I may be 99.98% disease free, as of this moment, but being a survivor means you are reminded ALL the time that there are things you can’t outrun. The other day, I was sending a super-exciting work email about a new project, when I got a call from my hospital…I let it go to voicemail, wanting to deal with it on my terms. It turns out my chimerism (which measures how much my new bone marrow has taken hold) has slipped again, down to 91%, from 93.5% last month and 97% before that.
It’s not unheard of, for chimerism to shift, and my doctor assures me that I have no reason to be alarmed, since I’m still testing disease free and all of my blood cell counts are very healthy these days. BUT, if it continues to go down, I could need more white blood cells from my sister, to “finish” my transplant through a process known as a DLI (donor lymphocyte infusion).
It feels like it never ends. You try to keep it all in perspective (and remember that you are officially 99.98% disease-free), but there are so many numbers, and you want them all to be perfect so you don’t have to be afraid of anything. But nothing is ever perfect, and nothing is ever permanent…just a couple of the things I’ve learned in my bones this year (no pun intended).
I apologize for not having blogged in a while, there are reasons. I’ll try to explain briefly…
I’m sure it looked like I was 100% “back,” when you saw me rapping on “Good Blood” and running 5K’s back in September. In case you haven’t seen it, here’s “Good Blood”:
The truth is, I was probably at 60-65%, at best. And the success of “Good Blood” has been one of the great thrills of my life, but all the extra stuff that it led to (public speaking, requests, emails, etc) completely overwhelmed me and ultimately set me back in my recovery a bit.
In October, I was tired as hell, and going through an identity crisis of sorts. My illness had made life so simple. The goal was obvious, and so I narrowed my focus and I ended up winning the fight of my life. So like…what do I do now? This is a question that many survivors ask themselves. And it’s not an easy one to answer.
Throughout November and December, I actually tried to write a very long and involved piece about Survivorship and Finding Purpose. In it, I wrote about how life-changing epiphanies are just sort of the beginning of things, and how hard it is to make real changes in your life. I revealed what I was going to do now: several dozen essays, encompassing all aspects of the patient experience, to contribute to the need for more patient-centered information online.
I worked on this post for 2+ months, but for some reason, I was never happy enough with the post to actually publish it. I’d revise it over and over, but for some reason I couldn’t let it out into the world.
It actually drove me into a spiral of anxiety and depression. On top of the creative paralysis, I was seeing little physical progress with my very low energy level. I spent the last couple months of 2015 deeply unhappy, paradoxically feeling a complete lack of purpose.
I share this because I’ve learned that anxiety and depression are actually very common issues for survivors. I don’t have a lot to say on the matter, right now, but I want other survivors going through issues like clinical depression to know that they are not alone, and however bad the pain is, know that there are ways to seek help, and none of them are a negative reflection on you.
Thankfully, my issues with depression have passed—I believe there was a connection to the havoc that a year of antibiotics wreaked on my gut. I’m feeling much better now that I’m off of them, and eating yogurt every day to rebuild my gut probiotics. Mentally, I’ve made a ton of progress by attending the free Qi Gong classes run by the Cancer Support Community and instructor Michael Sieverts–a 16 year brain cancer survivor and a true inspiration.
As I took some time off from writing, over the Christmas holiday, I realized that discussing one’s personal trauma publicly requires a level of emotional nudity that borders on pornography. That may sound extreme, but just know that if you’ve felt any truth or connection to what I’ve been writing, it’s come at great emotional expense.
And being a writer gives you a complex where everything you write has to be funny and interesting and compulsively readable and insightful and emotionally truthful. And of course, no one online will read it unless it’s uplifting. No, nobody wants to read about you struggling with your problems—they want to see you transcend them!
Look, I’m pretty awesome, but even I can’t be transcendent at all times. That would cheapen the meaning of the word transcendent.
So I’ve made some changes for 2016. And, while I would love to do something with the 100+ unedited pages on my hard drive—right now I need to put some more distance between me and the hell of living through two deadly diseases and a bone marrow transplant.
It’s been a hard lesson. “To whom much is given, much is required,” but I am learning that I don’t need to live in my pain at all times, to give back.
It makes me a lot happier to live right now. I will always care deeply about my comrades in this struggle, but I’m starting to learn that I can be a better help to others if I take care of myself first. As I told my friend Shahonna, I’ve decided to take a break from personal reflection.
And, wouldn’t you know it, as I told her of my new mindset, Shahonna revealed her new creation to me: I’m Somebody, a guide to overcoming illness and adversity, from the patient’s point of view. Check it out, it’s really great and incredible and inspiring.
Not only am I so proud of Shahonna as a friend, for creating this much-needed site, but I’m thrilled that I no longer have to! I guess we crossed each other’s paths for a reason.
So maybe my instincts were correct: my purpose lies elsewhere. I’ve actually been working pretty hard on a couple projects that really excite me, lately, and I’m finding that I have more creative energy than I’ve had in three or four years, since I’m not fighting debilitating fatigue any more. It’s one of the best feelings I’ve ever had in my life.
So while past reports of my return may have been greatly exaggerated, it gives me great joy to report that I am officially “back.” And I’ve got big plans. No, really…
Starting next month, Stephanie and I are uprooting from our home and jobs and embarking on some long-term travel. I should introduce you to the newest addition to the McDevitt family:
A rare automatic shift 1979 Volkswagen Westfalia Camper we found on TheSamba.com (shoutout Nate Corrdry), we’re gonna be driving her around The West all summer, doing lots of camping and hiking and surfing and visiting with friends and family. I’ll still be working on writing and directing projects, but Stephanie will be taking some much-needed time off.
I’d love it if you followed along with our adventures on Instagram, I’m @CreativSurvivor.
If, like all of my friends, you’re wondering, “How the hell did you get Stephanie to sign up for living in a van for four months?”… Well, I did bring up the camper idea while I was hooked up to a chemo IV, during a 31-day bone marrow transplant, so let’s just say I understand the art of leverage (and the advantages to getting sick). Sometimes, setbacks are the real opportunities.
We will miss LA, and we’re not sure where we’ll end up when our journey is over, but the one thing that’s clear right now is that we’re ready for a change of scenery.
Thank you for reading and following along with my story. I’m a big believer in the power of positive thoughts and prayers, so thank you for keeping my family and I in yours. I want you all to know that I am doing great and am the happiest I’ve been in a long time. The chimerism phone call was just another reminder not to take anything for granted…probably advice we can all follow.
A year ago, my biggest wish was that on this day, March 11, 2016, I would have my life back. Not only did it come true, but my life is so much fuller now. I feel so connected and full of purpose, and I promise you that I am hard at work on multiplying and amplifying the positive energy you have sent my way.
I’m going to make the most of my second chance. I hope you will make the most of whatever your situation is, and not be afraid to ask others for help.
If you’d like to get me something for my new birthday, please sign up for the Bone Marrow Donor Registry at BeTheMatch.org. If you’re not eligible, share my story with a friend. Or young Joshua’s story.
Always remember that we all have the power to help one another. Y’all are amazing. All Positive Vibes, All Day. Ok bye, love you.
POSTSCRIPT: Literally 5 minutes after I published this post, a friend informed me that she’s just been contacted as a perfect match for a Leukemia patient. She signed up at a Be The Match event that I invited her to. I’m going to go cry happy tears in my lunch now.