The Blog

Keeping it 100: Celebration Day

one-hunna-emojiWe made it. It has now been 100 days since my bone marrow transplant.

Day +100 seemed so far away, when I was mulling my transplant decision.

There was a time when I was really worried these one hundred days would be my last.

And I’m still here. Without any Graft-Versus-Host complications, to boot.

And I’ve been feeling good.

So good, I just flew cross-country with my wife for the 100th birthday celebration of my childhood summer camp, Fairview Lake YMCA Camp in Stillwater, NJ.

Fairview Lake circa 1998. Looks exactly the same today #nofilter

Fairview Lake circa 1998. It looks no different today #nofilter

There isn’t room in this blog post to do justice to the role Fairview Lake has played in my life–it sparked my love for the outdoors, introduced me to my best friends, and gave me the best job I’ve ever had (also, the only job I’ve ever been fired from…twice)–but just know that I’d been looking forward to the Centennial since my last day of work as Unit Director (yes, after the second time I got fired, I was promoted–camp is complicated), in the summer of 2005. Stephanie can vouch that I’ve been talking about the reunion since our third date.

But when I heard about the long recovery time for bone marrow transplant patients, as well as the isolation and the travel restrictions, I realized I’d need a lot of luck to be able to fly out for it. So I decided to make my own luck, or at least try.

I called my transplant coordinator every single day, doing whatever I could to make sure I got myself on the books for an early March transplant, with a chance to make it to the big reunion in person. I don’t know if anyone has *ever* been in such a rush to get chemo and live in hospital isolation for a month.

And we made it. I was transplanted on March 11, and on Transplant Day +93, Steph and I arrived to the camp parking lot, embraced immediately by friends I’ve known since I was 12.

The weekend was a joyous occasion, and the first time I’ve wholeheartedly enjoyed myself in a long time. I summed up my feelings here, but I plan to write more about the reunion, which drew 400 camp alumni, from as far back as the summer of 1939. As my body continues to heal, the weekend went a long way toward healing my mind and spirit.

But before I give you the full health update, I want to acknowledge the incredible response to my last post. If you haven’t had the chance to read it, I recommend clicking the link (it’ll open in a new tab)–you may learn something.

I was beyond nervous, posting about topics that we don’t usually enjoy discussing. Painful, inner stuff that I was scared to reveal to others. But then I heard from so many people, the very day I posted it–clearly, it struck a chord with the many people suffering from illnesses, especially “invisible” ones.

The letters I received from my comrades in suffering were amazingly generous, brave, and personal. Other readers thanked me for helping them to understand my suffering, on a much deeper level. But I need to thank you, for reading. You, my readers, are the brave ones, willing to face life head on and try and understand it while we’re here. Blogger Maria Popova writes, “Digging past the surface of things takes time…we don’t arrive at meaning via sound bites and status updates.” So, thank you for investing your time with me–you guys have given me a forum, and have been the hands that have kept me balanced on this tightrope.

(I should mention that if you missed that post and don’t ever want to miss one again, please sign up for my mailing list [Signup Form is in the TOP-RIGHT CORNER of the page, under “Want to Read More?”]. All my updates will be sent directly to your inbox)

Before this crazy year, I was never much of a “sharer,” online. I don’t post a hundred vacation pics or complain about the line at the pet store or whatever it is people are doing on Facebook. But if I hadn’t decided to put it all my health stuff out there, early on, I don’t know how I would’ve handled the mental and emotional side of this illness. I might’ve shied away from talking about it at all.

With anyone.

This stuff is straight-up painful, and I’m sure it’s rarely been easy to read. Yet, more people than I ever thought possible are reading it. Friends, friends of friends, and people I’ve never even met are reading. And sharing this pain has not only eased my struggles, it’s given me my most satisfying moments of human connection, as a writer.

It’s been my salvation.

When I got my diagnosis in October, I was thrust into completely uncharted waters. Online info was sparse, all of it terrifying. There was *one* voice I could relate to, though, and that was the blogger at aplasticanemiajournal.wordpress.com.

I discovered her during a night of terrified googling. She was about my age, with a clever voice and clear explanations that made me feel better and much less alone. But then, after her transplant, the posts basically stopped. Two months, post-transplant, her uncharacteristically brief post read, “Recovery slow–please be patient.”

And then, nothing. That was almost four years ago, and she’s never updated the blog or posted to Marrowforums.org since.

Journaler, I don’t know your name, but I have a feeling I know what happened to you, and I’m sorry. Thank you for helping me and other Aplastic Anemia patients, and for being a friend during the most difficult period of my life. If you ARE still around somewhere, please say hello. If not, just know that I won’t forget you.

***

Continuing in her spirit, I would like my blog to stand as proof that it can get better. And even if it doesn’t, as long as you are alive you have this moment…to live for, and to be grateful for. I don’t care if that sounds corny, I’m in the trenches with this shit and I can tell you that right now is the only thing that’s real.

Pain and death and uncertainty are out there for all of us, and they are terrible things to face. I choose to stay present to all the pain, and share my story.

Who knows where I would be, if I hadn’t.

Putting my personal writing out there has also allowed me a glimpse of humanity at its absolute best. When I think of all the amazing things other human beings have done for me over the past 8 months, from the kind & compassionate Cancer Center nurses, to the loved ones and old friends who’ve shared their own painful experiences and given me strength, to my sister Meghan, who donated her bone marrow without hesitation and saved my life, to my brother Neil’s bone marrow donor drive and everyone else who signed up for the bone marrow donor registry, to the people who made me food and sent me books and DVDs, to my parents who relocated to LA for a month to chauffeur me around, and especially to my wife Stephanie, who’s dealt with my disgruntled bullshit, day in and day out…

I get a little misty.

FACT: All Kevins keep it 100.

FACT: All Kevins keep it 100.

I can’t thank you enough. People always say that, I know, but it would literally take the rest of my life to adequately thank all of you who’ve helped out.

And why am I thanking you all now? Because it’s day +100. It’s a celebration, bitches.

100 days on and I’ve got my life. I’m effectively free from PNH. My bone marrow failure (from Aplastic Anemia) has almost completely reversed: my platelets and red blood cells are up, white cells are getting better, but not quite there yet. My chimerism, the measurement of transplant success that had dropped at the time of my last post, has increased from 67% to 83% Donor Cells, hopefully on its way up to 99% or 100%, where we want it to be.

I made it through the most dangerous part of transplant without any Graft-Versus-Host and, as of last Monday, I’m no longer taking Tacrolimus (immune-suppressants). I’ll be off the rest of my precautionary meds shortly: antibiotics, antifungals, and antivirals. I can eat out at restaurants, I have the energy to work and exercise, and I don’t have to wear a mask when I leave the house.

I am dealing with a sore throat, today, evidence that all the travel and people germs may have been a strain on my young immune system. I’ll have to stay cautious for a while, yet. So, while I’m not out of the woods, like I wished I might be by Day +100…this illness thing teaches you patience. Like a motherfucker.

And soon, I believe I’ll be cured.

So, to my fellow patients out there…you can make it. Bone Marrow Transplants may be scary and not fun to think about, but they’re getting better and better at doing them, every day. I had SEVERE cases of both PNH and Aplastic Anemia when I went in for transplant, and my body responded beautifully.

Three months later: I flew cross-country with full doctor’s approval, to the Fairview Lake Centennial, and had the energy to hike, swim, shoot archery, and catch up with old friends, late into the night.

So I consider myself very lucky. Lucky to have such a special place in my life, and luckier to be around to enjoy it. The reunion felt like time travel, back to a place where my body was working and my head was free from worries…it recharged my soul, and got me excited about life again. I came back feeling like myself.

It had been a long time.

Now, I’ve been through enough, at this point, to know not to let my guard down. So, this is not a victory lap. As for my health problems, this isn’t the end, but hopefully it’s at least the beginning of the end.

But right now, in this moment, I feel good. So let’s celebrate Day +100.

We made it.

Thanks for reading. I’ve got some big plans to share with you soon–I’d love it if you signed up for my email list. To stay posted on my health and other big doings, just scroll all the way down to the Footer and, under “Want to read more?”, enter your name & email.

Comments

comments

3 Comments

Got something to say? Feel free, I want to hear from you! Leave a Comment

  1. Kaisu says:

    I’ve been there too – in your wife’s shoes.In 2008 or so. I’m a wife of SAA&PNH survivor. We’re happy and healthy with three sons today. God bless your recovery! Happy Midsummer!

  2. John says:

    Here is what happened to our “aplastic anemia journal” friend. After reading her blog and yours, I don’t know where my severe AA will take me, but both of you helped me a lot.

    http://callananwoods.tributes.com/show/Katherine-Anne-Clark-93057982

Trackbacks for this post

  1. What Could Be Worse than Blood Diseases and BMTs? - Kevin McDevitt - Writer. Filmmaker. Rare Disease Hunter.Kevin McDevitt — Writer. Filmmaker. Rare Disease Hunter.

Leave a Comment

Thanks for reading. I would love to hear from you in the comments!