The Blog

Happy Transplant Birthday To Me: An Apology

“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 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:

She's my hippie dream.

She’s my hippie dream.

 A rare automatic shift 1979 Volkswagen Westfalia Camper we found on (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 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.


— Kevin

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.

Bedbugs: Worse than Blood Diseases and BMTs?

I must be doing really well, right? It’s Day +153, post-bone marrow transplant. I’m now 91% transplanted (!), and if you’ve seen my recent photos, I’m newly mask-less, able to play in the water, and cultivating my newfound energy to train for the Be The Match 5k in NYC (NYC-area folks–please, join my walk/run team now!).

In spite of all that excitement, would you believe that something so ridiculously frustrating has come into my life, that I’ve lost all the satisfaction of nearly eradicating Aplastic Anemia and PNH?


I) “Things are actually getting better!” I thought.

One week.

Exactly one week of normalcy was all I got, with that magical combination of energy, the time to do something with it, and the profound inspiration of making it through a life-changing event.

And then we got BEDBUGS.

I know, you think I’m making this up. That I orchestrated this story to further my career as a “How to Deal with the Worst Bullshit Imaginable”  blogger.

No, it’s really happening and it’s turned our lives upside-down in a whole new way and I’m sorry to make you read about it. BUT, I’m having fun with our struggle1–so don’t be afraid to laugh with me as we claw our way back from the brink of madness.

II) Trauma Queens

It started after Memorial Day, around Transplant Day +60. Stephanie started noticing bug bites. The bites, usually on her arms or shoulders, would swell up like Macauley Culkin at the end of My Girl.

My Wife Steph's arm and bedbug bites

We brought her to three different doctors. No one had an answer for what was causing the swelling, but a steroid cream made the bites more tolerable.

Six weeks passed, and we grew extremely anxious, not knowing where the bites were coming from…

Until Stephanie came face to face with pure evil.

My wife screams when confronted by bedbugs.

With no choice but to kill or be killed, she apprehended the bedbug.

A dead bedbug in a jar.

We confirmed the bugs were in our couch. Yup, our brand-spanking-new, wedding-gift-to-ourselves, central-to-my-recovery couch. Fortunately, the bedbugs had not yet reached the bedroom.

I’d heard bedbugs are really tough to get rid of, but I had no idea how gross they were until I heard from my old college roommate Cote.2

Cote weighed in via email:

“Bedbugs? Yikes.

I took an Insect Ecology class last spring and learned bedbugs reproduce through what’s called ”traumatic insemination.’ It’s pretty much what it sounds like. They’ll put that thing in anywhere, but usually through the blood engorged abdomen.

Very traumatic for all involved.

– Cote, Trained Scientist

“Dude…traumatic insemination? I’m supposed to be recovering from a bone marrow transplant,” I told Cote. “The last thing I need is these little rapists having their way with me and my couch!” That’s right, Mr. Bedbug. I’m calling you what you are.

This bedbug is a rapist, as are all traumatically inseminating monsters.

So, kill these sexual maniac bugs and be done with it, right? My friends assured me it wasn’t so simple. Several people said the exact words: “Bedbugs?! I’ve had them, they’re the worst!

“It’s okay, honey,” I comforted my wife. “We’ve already been through ‘The Worst,’ this is nothing compared to that, right?”

“Right,” she mocked, “Did you look at all the shit the exterminators expect us to do?” Reluctantly, I opened the instructions from the exterminator (click for PDF).

Oh Lord, I thought…

Clean every wall and baseboard, and remove all outlet covers?
Empty our closets, wash all clothes and linens in hot water…twice??
Don’t wear shoes for two months??? How do you even do that?

We were instructed to leave all of our possessions in plastic garbage bags, to be sprayed along with the couch.

Given that I actually have a mini-meltdown when I find shoes on the floor, filling 100% of our apartment’s floor space with garbage bags containing our every last possession…I wasn’t quite sure how that was going to work for me.

III) Drudgery Loves Company

All my laundry at once, including my Roseland b-ball jersey.

Washed EVERY article of clothing in hot water, before/after spraying. (whattup Roseland, NJ?)


Try getting to the bathroom at night, when your bedroom floor is literally garbage bags.

Huge pile of equipment to get rid of

Emptying closets meant throwing away useful stuff. Xmas tree stand, we hardly knew ye.


All of my books in a bin: Chabon, Klosterman, Bloom County, et al

Inspected books before storing for two months–time to get a Kindle?

We packed and prepared for six solid days and nights. Of course we didn’t rest–we had nowhere to sit down!

My home office was too traumatic to even photograph. I just shoved the notes from all seven of my current projects into one of the dozen garbage bags on my office floor, and ran away filled with terror.

If your emotional state is said to reflect the state of your living space, my mind was certainly a bedbug-bombed bullshit cave.

A LONG list of things to do before bedbug extermination, including "JUMP OFF A FUCKING BRIDGE!"

I found myself looking forward to the final item on my To-Do list.

I even had to get rid of my favorite t-shirt of all time:


R.I.P. Ol’ Dirty Bastard.

The vibe around here was not great.

The bummed faces of our heroes.

But, Saturday night, we dragged ourselves to the bar, where I seem to have forgotten all about the monsters in my couch.

Kevin assed out on couch

Eventually, we packed up our place so completely that we could’ve called movers and fled Los Angeles within the hour. Instead, we kept the apartment and escaped to my in-laws’ house.

IV) Picking Up the Pieces

A couple Fridays ago, after the exterminators had sprayed everything twice and given our apartment time to air out, we were finally able to come home.

To an apartment that looked like this:

My apartment in a completely abominable state after bedbug spraying, but with handy labels for where the exterminators left everything

I felt like I’d been traumatically inseminated.

I found writing impossible, so I washed and folded 25 more loads of laundry and racked up a $300 dry cleaning bill, over five more days of nonstop manual labor.

“This really is worse than my transplant, isn’t it?” I thought. At first, I found the very thought laughable.

But then I looked at how stressed, angry, and physically exhausted I was, and how at our lowest moments Stephanie and I were hardly able to be in the same room without driving each other crazy, which never happened during my transplant.

Maybe the BB’s could actually give my BMT a run for its money, I thought.

For some reason, I needed a definitive answer.

I decided to do a boxing-style “tale of the tape” and break down every bullshit attribute, to find out which fiasco really has been “The Worst.”

“The Worst”: Bedbugs vs Bone Marrow Transplant

 Bone Marrow Bullshit
     Bedbug Bullshit
Abbreviation?  BMT. Sounds like an issue with my bowels. The BBs. Sounds like an alt-country band (female).
 √ WAY more bullshit.
Required Physical Activity:
Lay back and kick it, take occasional walks.  60+ HOURS of unexpected manual labor, while I should be recovering and training for my 5k.
 √ MUCH more bullshit.
Could have killed me?  Any # of ways. Infection, GVHD, et al.  Only if I jumped off that fucking bridge. I came close but I was too tired to get off my floor.
 Advantage:  √ A LOT more bullshit.
 ‘Best’ part of moving out of our apartment?  31 days of not having to think about meals. At the hospital.
 2 weeks of not having to think about meals. And they have a jacuzzi. Fuck yeah, in-laws!
 Advantage:  √ Uh, yeah. More bullshit.
 Finish the phrase: Traumatic ______.  Stress. PTSD is no joke, man.
 Insemination.  They’re just makin’ babies, the way God intended! The little rapists…
 Advantage:  √ Bullshittier.
Lesson Learned:  Shit can happen to anybody.  Shit can happen to me *repeatedly*.
 Advantage:  √ Bullshit. It’s like “come on,  I get it” at this point.
Outlook/End in sight?
 If chimerism reaches 99%/100%, I could go into remission forever. For now, I wait.
 Will never again feel itchy, without freaking out/moving/throwing out my couch.
 Advantage: Those bullshit bugs will haunt my dreams for a long time.
 FINAL VERDICT:  √ Winner, 4-3, and STILL Heavyweight Bullshit Champion of the World…the Bone Marrow Transplant!

It was closer than it had any right to be, but it turns out bedbugs are not the ‘The Worst.’ However, having these exact two problems, in that order, is definitely ‘The Worst’ scenario.

Also: Fuck it. Fuck it all.

V) Closure?

This morning, Stephanie found some more bites. After all of that work, we may not have even gotten rid of the bedbugs. We may have to get rid of our couch.

Or, we may just fire all our belongings into outer space and move to The Integratron.

But don’t worry about us, we’ll be fine. The truth is, after what we went through earlier this year, we ain’t worried bout nothin. Sure, our first year of marriage has featured illness and monstrous microscopic rapists, and we’ve spent 60 days exiled from our apartment, but we’ve got each other and we are beasts.

And I get to channel all of my bullshit into this blog. After all, “Laughter is the best medicine,” said someone who was definitely not a doctor. And I’ve got a new post coming next week, with some new exciting details and original artwork for the Run/Walk team I’m building for Be The Match.

Remember, you can be part of the cure for blood cancers:

September 19th! New York City! CLICK HERE to sign up to Run OR Walk today!!!

For now, though, I must retreat to my happy place and leave you with three Haikus. The first is by the beautiful Stephanie McDevitt…

O, vile bedbugs–
My arms, they swell enormous!
Die. Die. Die. Die. Die.

In-Law Interlude;

Their respect for me dwindles
Clogged upstairs toilet

“Gotta keep livin’,”
Spoke Prophet McConaughey.


Kevin McDevitt is a Kevin McDevitt blogger at–join Kevin McDevitt’s email list to stay on top of all Kevin McDevitt news!


  1. I’m an Irish boy from New Jersey, all we do is make fun of stuff that pisses us off
  2. It’s a French-Canadian last name. Pronounced “Co-Tay” in Canada, but everyone here says “Cody” or “Cotey” for some strange reason.

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

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 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.

After Bone Marrow Transplant: As Real As it Gets

Marvel, we're available.

We’re available, Marvel.

Wow, it’s almost the end of May. That means I’ve been living in this altered state for more than 7 months. Forgive me for not writing, I’ve been far too busy being awesome.

It is Day +72, after my BMT, and I’m doing well, considering where I was a month or two ago. Of course, when you’re talking about bone marrow transplants and ridiculously rare blood disorders, it’s never that simple. So it’s about time I catch you up , and then later I want to talk to you about something really important (that you probably haven’t thought much about):

– Left the hospital 6 weeks ago (Day +26). That whole first car ride home, down Robertson Boulevard, I basically had my head out the open window: the air felt fresher, the trees greener. But, after 31 days inside, coming home turned out to be much more of an adjustment than I thought it would be. I’ll get to that in a bit.

– First three weeks at home: Tired. Soooo tired. I spent a lot of time on the couch, which was fine, because my baby immune system had me frightened to leave the house, anyway. So, I read a LOT (I recommend Behind the Beautiful Forevers—terrible title, but an incredible true story from the slums of Bombay). My parents moved into a sublet down the street, and my Hemoglobin and Platelet counts continually climbed, at my twice-weekly appointments. Meanwhile, my white count was stagnant, and lots of odd things happened to my body: for instance, I didn’t know you could get chapped there. (I wish I was joking.) I also had a bout of night sweats (not bedwetting).

– Getting used to the restrictions was tough, but Mom & Stephanie made great meals for me; I stuck strictly to home-cooked, extremely well-washed foods. Some foods were difficult to digest, due to my recovering gut flora, and lingering chemo effects.

– I was granted special permission to attend the San Diego wedding of two great friends. I skipped the reception, and felt kinda weird and germophobic sitting next to strangers at the ceremony (even wearing my mask). At the same time, I felt extremely lucky to share in Alanna & Kev’s joy. I felt gratitude.

A beautiful La Jolla day. Thank you, Universe.

A beautiful La Jolla day. Thank you, Universe.

– As I got the energy to leave the house, I wore a mask and hand-sanitized like Howie Mandel in an Arby’s restroom. I wondered whether I needed the mask, until the day I forgot it and had to wait a half hour for my prescription at CVS, on line with like 7 sick people, coughing and sniffling. The mask would’ve at least prevented a mini-nervous breakdown.

The squad. T-shirts by Britt Burke & Nick Waetjen.

The squad. Click for a closer look at the amazing T-shirts by Britt Burke & Nick Waetjen.

– Then I got another huge boost of moral support when my sister led our team, Non-Jerks United, to multiple medals at the AA/MDS 5K! And our team raised more than $3,500!

– So, as crappy as my body still felt, things were looking up. Then, on Day +37, I got a call: I had the Epstein-Barr Virus. Like the 90% of adults who’ve had EB-V in the past, the virus was dormant in my blood until my chemo caused it to flare up. Unchecked, EB-V can lead to other, very serious illnesses and even cancer. So, they put me back on the weekly IV drips, hooray! This particular cocktail knocked me out in my recliner for 5 or 6 hours every time; I only woke when the doctor would check in, and I’d spend the rest of Monday at home in a cranky haze. It was not a happy time.

– There’s obviously a lot more to all of this—I haven’t even gotten to the truly Kafka-esque bureaucratic bullshit parade re: insurance—but I’ll leave all the gory details for the book I might write some day. These days, I’m putting more creative energy into editing the novel I wrote in the hospital (yes, I really wrote it during those 31 days—I’m not sure how). It feels great! At times, writing fiction is a much more positive experience than trying to process this insane situation.

And this novel is actually a project I’m really excited about!

I’d love to tell you more about the book, so if you’re interested in being the first to know about it, just sign up for my new mailing list (scroll up, to the form in the top-right corner of the page, or email me). Joining the mailing list is also a good way to keep up with my well-being, to know when I’ve updated the blog, and to make me feel all warm and fuzzy inside. I’ll never spam, I’ll never be dull or depressing…I’m just gonna share some real life. So sign up and make me feel nice!

– Recent weeks have brought some other positive developments and new freedoms: I’ve just had the PICC line taken out of my arm (SHOWER FREEDOM!), I received the okay to eat at some restaurants, and I even went back to the gym after half a year away! I was also able to sightsee with my parents and attend my sister-in-law’s graduation. Then after 4 weeks of IVs, I successfully fought off the Epstein-Barr virus, and now I’m down to one appointment per week. All of this is awesome. But, as sayeth the Grateful Dead, every silver lining’s got a touch of a grey.

Chimerism: NOT a disease where a lion with a goat's head runs around your bloodstream.

Chimerism: NOT a disease where a lion with a goat’s head runs around your bloodstream.

– Though my blood counts continue to look up (12.2 HGB and 139 Platelets—close to normal!), I just got my Chimerism Test back, and I’ve regressed.

Chimerism is the measurement of what percentage of my blood is being created by my new, donor bone marrow. We want to see results close to 100%. I’m at 67% donor blood, which is not a good thing. Transplant patients who end up with mixed-chimerism have a greater chance of relapse, or even developing another disease.

Thankfully there’s still time to influence it—they’ve reduced my immune-suppression meds, to see if that spurs more activity from the new marrow. If not, they may need to inject some additional white blood cells from my sister. It should turn out fine, but it’s scary.

As I type this, I notice that I’ve almost never said “I’m scared.” It’s so hard for me to talk to those close to me in that way, because I know how worried they must be. I don’t want to add to it, and I find that sometimes it’s only after being “done” with everyone else’s reactions, that I get to have my feelings about it.

Some people have told me they admire my positive attitude. It’s strange to me…what, am I supposed to just give up? Do they not realize that I have to go on living my life, constant state of stress or not?

And that brings me to the important topic I alluded to earlier: how we talk about suffering. I actually wrote about this last month, but was reluctant to post it…for one thing, so many people have shown such heartfelt love & support, I didn’t want to risk even a whiff of whinyness by complaining about this. I also feared offending anyone personally. I held off for a month, to get perspective. Then I looked at the quote next to my desk, “If people wanted you to write warmly about them, they should’ve behaved better.”

Now, I feel more compelled than ever to share my “unaired” post, written just after I learned I had Epstein-Barr Virus, and reflecting on my first two weeks out of the hospital and back in the world. Here goes:

April 21, 2015 [Day +41]:
I’m tired. I think I’m still recovering from 31 nights without sleep, in the clamor and cacophony of the hospital. This is the first writing I’ve done in two and a half weeks–that tells you something after I wrote every single day during transplant, through chemo, fevers, etc.

Mentally and emotionally, I’m still recovering from the BMT. Or trying to move on. Or…something. I don’t know. I don’t think it’s easy to explain to someone who hasn’t been through something like this.

The physical part was tough, no question. Could’ve gone a lot worse, but I would definitely say that I suffered a bit. But the part I could’ve never predicted is the mental stress. 31 days of watching your labs, of being barged in on by hospital staff every twenty minutes, of being talked to as if I don’t understand my health situation…it takes its toll.

Cards by Emily McDowell.

Empathy cards by Emily McDowell, a cancer survivor and a genius.

And the fear…Mentally, you’re on a tightrope: you just try to move forward, one step at a time, and NEVER FUCKING LOOK DOWN. And every time you do look at what’s below, it shakes you.

You don’t always notice the stress. You get used to it, in a way, and your conscious mind forgets it. But you feel it, it effects you, and it never lets up. I snapped at loved ones and hospital workers. By that final week, I hated everyone in the hospital but my wife.

And when you get home, that stress stays with you. For me, it manifest as anger and bitterness. My first day home…walking into a quiet apartment was like heaven. I just sat and smiled, knowing no medical person was going to barge in and bark questions at me. But, later in the week, I realized that ALL I could handle was quiet.

Whenever I had to interact with someone, it made me take note of an intense, inner spiritual pain—I don’t know how else to describe it, but it was real. I meditated, went for walks, read books, but nothing could relax me…I honestly felt like I may never be capable of experiencing joy again. The only time I escaped the feeling was at the 10:30AM show of Furious 7. I laughed in my mask. I yelled “what?!” at the screen multiple times. I cried real, manly tears. But the next day, the bad vibes persisted.

I didn’t want to talk to Steph much, and check-in texts and calls from friends and family seemed like obnoxious interruptions. I’m serious, in that state, texts from loved ones actually made me mad. Why? I don’t really know. As much as I wanted their support, I rejected it. When you go through this, you want people to empathize. But, how could anybody else understand what this is like?

I tried to tell my wife how I was feeling. That as much as I wanted to be happy to be home, I felt something like a dark cloud hovering over me—I didn’t think it was depression, it felt more like an edge, a chip on my shoulder. An involuntary anger that I had no idea what to do with. It certainly didn’t feel like me.

I hoped it wasn’t the new me.

I compared it to the shell-shock or PTSD that soldiers home from active duty often experience. I struggled for the words to describe the feeling of 31 days of pent-up traumatic stress, and told Steph that it might take some time before I felt or acted normally. “It’s a process,” she told me, clearly empathizing. But to me, even that didn’t feel like empathy. To me, it wasn’t a “process,” some one-word catch-all. This was real pain, without any easy answers.

And I realized that’s why I didn’t want to talk to anybody else…because they can’t help but simplify and encapsulate your life into some well-worn bit of one-sentence wisdom (“what doesn’t kill you, makes you stronger,” etc etc). And even if there’s some truth to it…you know they don’t get what you feel. You know that you aren’t some superficial cliche, used by someone who wants to let himself off the hook from grappling with the human condition.

Some people are really bad—one of my neighbors asked me about the PICC line in my arm. Pleased that he took a neighborly interest, I told him I’d just had a BMT, and he actually responded, “Oh, I didn’t mean to pry into your personal stuff,” and walked away as quickly as he could. Dude, you literally asked me about my medical condition! Now I’m supposed to feel guilty, for bumming you out?

There is officially a meme for every emotion.

There is officially a meme for every emotion.

That was extreme, but he’s not the only one: lots of people care, but only to a point. You start to feel like a pariah, especially in a culture that’s so addicted to positive sentiment. People latch onto whatever nugget of good news there is, and ignore the rest. Every conversation has to end on an upbeat note, right? People love to put a bow on it. “There, all better now.”

This drives me nuts. But what’s saving me is a little book called Man’s Search for Meaning, psychiatrist Victor Frankl’s survivor account from the Nazi concentration camps. In writing about some of the most horrific suffering man has ever known, the author gets to the essence of what makes us tick. We all encounter suffering; in a mere 150 pages, Frankl not only teaches you how to handle it, but gives you the very meaning of life. (Seriously.)

Frankl believes that “Meaning” is what drives us as human beings. He quotes Nietzsche, “If we have our own ‘Why’ in life, we shall get along with almost any ‘How.’” Frankl uses his Holocaust experience to illustrate this idea. After all, how did those survivors get through that horror without being absolutely broken, as human beings? To not only survive, but survive with an inner peace, a spirit, and a sense of meaning.

Anyway, Frankl talks about how the physical suffering of the camps was easy to bear, compared to the insults to their humanity. On a much smaller scale, that was how I felt: I got over vomiting all night from chemo much more quickly than I’ll ever get over the time one nurse left the IV alarm going off at MAXIMUM volume next to my head for 20 minutes in the middle of the night.

Frankl’s biggest revelation, for me, is the bitterness and disillusionment many survivors felt upon returning home, to a world that didn’t understand what they went through. “I suffered during the war, too, you know.” — People actually said this to Death Camp survivors. They just couldn’t conceive of it. Meanwhile, I had people compare my life-threatening, bone-draining transplant to A) Twisting an ankle, B) Working with an ex, and C) Taking a vacation. For real.

But I think this is instructive: everyone suffers somehow, including total dumbasses. And none of us knows what the other is going through (this goes double, for dumbasses).

The key, Frankl says, is to “own” your suffering, in order to transcend it. Accept that most people will never truly understand. He told his psychiatry clients to focus on finding the *meaning* of their suffering.

So I decided to figure out the “Why” of all of this for myself, and settled on a couple answers…

1) I’m going through this, so that I can share it with others. To raise awareness, to be a relatable guide for the next terrified patient googling frantically for some hope, and to be a recognizable voice for those who are going through the same things as me.

2) I’m going through this, in order to grow as a person. My long run of sick days has given me a lot of time to think about what I want out of life. I know that this difficult experience is forging me into the person I want to be.

No please, allow me.

Note: Having a “Why” doesn’t mean you get to say ‘everything happens for a reason’ now. Or ever. Some stuff just sucks. For no reason.

I wrote these “Why’s” down in my journal, after a good amount of thought and deliberation. I’d figured out, for myself, “Why” I’m going through this time. I felt a bit better the next day, and a bit better the day after that. I mellowed out, got comfortable talking to people again. My health rollercoaster continues, but the “How” part is a lot easier, knowing the “Why.”

In time, I’ve even found a little joy.


Thanks for reading all of that. You’re probably like, “Wow, Kevin, now I have even less idea what I’m supposed to say to you/other sick people.”

And maybe that’s the thing…how about just listening? Be aware of how difficult it is to talk about one’s own illness, and resist the urge to reduce the hardest experience of someone else’s life to a pithy catchphrase. For further reading, check out this wonderful LA Times piece on How Not To Say The Wrong Thing.

Check out more of Emily's empathy cards here.

Check out more of Emily’s empathy cards, her way of inspiring more authentic communication about illness and suffering, here.

Suffering is a part of life. In fact, the usually-pretty-chill Buddha even took it a step further and said point-blank, “Life is suffering.” So maybe we should allow ourselves to think and talk about it a little differently. Think of the soldiers we admire for putting their lives on the line: when they’re injured and suffer, we give them the Purple Heart, considered the military’s highest honor.

And yet we pity the sick. Or worse, we shove them aside. Rather than try to appreciate their bravery and beautiful humanity in the face of struggle.

We cannot forget that there is nobility in suffering.

As the late Stuart Scott said, of the cancer that was about to take his life, “You beat cancer by how you live, why you live, and in the manner in which you live.”

Think of the people in your life dealing with illness. Do they crumble under the bullshit they have to deal with on a daily basis? Fuck no. They do the best they can. That takes character. Let them know you notice.

But you don’t have to tell me: I’m proud of how I’ve faced PNH, AA, and my BMT. It sucks pretty hard, but I’m winning, and I don’t need anyone to put a damn bow on that.

Day +26: Freedom!

May need a wall of fame in the apartment.

May need a wall of fame in the apartment.

It’s true, I’m going home first thing Monday morning.

After a week that felt like a month, in which my crucial white blood count (WBC) stalled out at 0.3 for three days (and only crept up by 0.1 for the next two days)–over the past few days, it’s EXPLODED!

The WBC moved from 0.5 to 1.1 Friday, then up to 2.0 Saturday, before vaulting all the way up to 5.6 (!!!) today. At the same time, my neutrophil counts (the main disease-fighting immune cells, and my doctor’s main criteria for discharge) jumped from 0.5 to 1.2 to 3.6. Much of this was stimulated by a nightly Neupogen shot, but the effects were far greater than when I’d previously had the shot, as an outpatient.

I still can’t believe it. The huge jump today means that my immune system counts are actually in the NORMAL range, for the first time since before I had Severe Aplastic Anemia! I’m going to walk out of the hospital a healthier man than I walked in, and it’s only going to get better from here.

My other important counts are also doing well: Hemoglobin is staying about the same, and platelets have started to creep up on their own. The upshot: I haven’t required a blood or platelet transfusion in over a week.

I still have a ways to go, but this is a HUGE step. I have too many thoughts and emotions to try and get it all down, plus I’m completely exhausted, so I’ll use my preferred shorthand: Youtube videos.

Many times this month, I felt like the grape stomp lady at the end of this video:

But after a month of chemo, transplant, constant IV drips, alarms, and a whole host of hospital denizens poking and torturing me at every turn, I’m about to leave the hospital feeling like this kid:

So while I’d love to leave you all with an inspiring speech, I’m pretty sure the kid nailed it…so I’ll just be gettin’ myself fired up to style and profile outta here tomorrow, just like the Nature Boy:

I’ll write some more about what it’s been like, but only after I take a nap for like a year.

Thumbs up, everybody, for rock and roll!

My March Madness: How to Survive A Bone Marrow Transplant and Advance to a Cure

Climbing the Mountain O' Betterness

Climbing the Mountain O’ Betterness

Best thing about having a blog: I decided to write a survival guide for spending the month in the hospital for a Bone Marrow Transplant (BMT), where I tie it in to surviving the 6 rounds of the NCAA Tournament.

It may be a huge stretch, but I’m going through Madness in March and it’s my blog, so I get to write whatever half-assed gimmick I want!

Things are feeling pretty good at Transplant Day +14 (for BMT patients, time is measured in relation to the transplant day, Day Zero). 19 days into my hospital stay, I’m still waiting for my new cells to take hold and restore my blood counts to normal, ridding me of Aplastic Anemia and PNH forever. I’ve still got some fatigue, but I’m feeling strong enough to write an update, after some real challenging days. Plus, according to my blog gimmick, I’ve made the Final Four! But before we cut the nets down and celebrate, let me catch you up on the road I took to get here.

(Note: a lot of this will be written in the second-person, with the “you” directed at my fellow BMT patients)

Will CBS Lawyers sue a hospitalized man?

Will CBS Lawyers sue a hospitalized man?

1) ROUND OF 64: Preparation and Admission (Day -25 through -5)

To get to the Big Dance, there’s a lot you’ve gotta do. For me, the decision to pursue transplant was the hardest part.

After that, I put all my energy into being a good patient, BEING patient, and believing in the BMT: as a result, the mental side has been much easier than my first stay in the hospital. There’s a lot less unknown: I’m here to get cured, and failure is not an option.

As my boy Han says in the 2006 film classic, The Fast & The Furious: Tokyo Drift, “Life’s simple–you make choices and you don’t look back.” That’s wisdom. (I’m watching the Fast & The Furious series, front to back, while I’m in here–it’s important to have goals).

On admission day (Day -5), the first thing they did was install a PICC line (a semi-permanent IV, the line is inserted into a vein in my arm and threaded all the way to my heart). Months ago, the thought of this procedure was enough to make me queasy. With my new mindset, though, it became simply one step on the path to a cure. I breathed deeply, and within a few minutes, not only was it over, but I knew I’d avoid the constant needle-pokes that defined my first hospital stay and left me with bruises all up and down my arms.

2) ROUND OF 32: Chemotherapy Conditioning Regimen (Day -4 through -1)

Chemo sucks. And, like the round of 32, it separates the wannabe sleepers from the for-real teams.

Over four days, I was given doses of Fludarabine, Cytoxan, and ATG. These drugs are intended to destroy your immune system, so that your empty bone marrow can be replaced with the new cells. I reacted HARD to the ATG, violently vomiting all night, with a few other fun explosive bodily outbursts sprinkled in for good measure. I learned to keep both hands free and maintain a clear path to the bathroom at all times.

Now’s as good a time as any to discuss the bathroom: the bathroom is a whole thing, here. They take great pains to monitor all of your ins & outs. To my fellow patients: I guarantee you will never again answer so many questions about the size, shape, and consistency of your poop. Nor will you ever be nagged as much to take a shower, even though you’re rarely disconnected from IVs long enough to take one, because they have to put a special wrapping on your arm to protect the PICC line.

You’ll also be on lots of supportive drugs, including steroids that keep you from falling asleep at night. And that’s a pain, because your 24 hour IV drip is going to beep really loud at least once an hour throughout the night, and if you’re as lucky as me, the guy in the next room won’t know how to use the nurse call button and instead just yells out “Somebody help me! help! help!” every time you’re on the verge of falling asleep.

Another word about the 24-hour IV drip, which you’ll need a nurse to disconnect, even to do something as simple as changing shirts: you CAN have some say in how long you’re connected. After a few sleepless nights, I complained to my doctor, and he was able to switch my Tacrolimus to pill form, meaning I’d be disconnected all night. So remember, it’s always worth asking.

3) SWEET 16: The Transplant (Day 0)

Amazingly, the transplant itself ends up not being such a huge thing.

My new birthday: 3/11/15

My new birthday: 3/11/15

After everything else you’ve been through, it’s basically a one hour blood transfusion. At the same time, it feels so sweet: after months of suffering from Aplastic Anemia and PNH, it’s time to get cured!

By this point, your immune system has been destroyed: your white blood count is zero, AND you’re on drugs that further suppress your immune function, so you have basically LESS THAN ZERO ability to fight infection. This means you’re gonna stay in your room, you’re gonna eat from a limited menu, and every single person who comes near you is going to sanitize their hands, or suffer the consequences.

4) ELITE 8: Chemo After-Effects (Day +1 through Day +7)

Oh, did you think you were done with chemo? Turns out most of the side effects are actually delayed by about a week. Transplant Days +3, +4, +5, and +6 were absolutely brutal, for me.

I developed mucositis, which basically felt like my entire digestive tract was burning, while I got stabbed in the chest and back from the inside–so, nothing too bad, really. Thankfully, there’s an extensive drug menu here, and I was able to settle on a cocktail of Oxycodone, Ambien, and Maalox, to get through the worst days and nights.

Chemo also messes with your taste buds: 80% of food, including stuff you love, becomes totally repellent. It’s like you’re pregnant. On the bright side, the nurses say to eat whatever you can stomach–I’ve now eaten pancakes eleven days in a row (BONUS!).

All I can say about this period is that you will get through it. You’re stronger than you think. I pointed out in my first blog post that the hardest thing for we humans to deal with is UNCERTAINTY. Well, take solace in the certainty that this chemo is the best thing for you, and take it a day at a time. Take the drugs that relieve your symptoms, be a good patient, and try not to physically strike the people who annoy you.

5) FINAL FOUR: The Waiting Game (Day +8 through Day ???)

This is where I am right now. Many challenges are behind me, and I’m on the cusp of going all the way. I’m still getting transfusions, but thankfully the pain has subsided. It’s just a long, LONG wait for those new bone marrow cells to take hold, and for my blood counts to come up.

As I said, GOALS are important at this time. The days go by much faster when you’re busy. I brought some work, in the form of my new sci-fi/mystery/comedy story (you’ll be the first to know, when it’s finished), and plenty of leisure: I highly recommend hooking up a game system in your room–our PS4 allowed us to bring a crate full of DVDs and games.

This is how you pack for a month in the hospital

A photo posted by Kevin McDevitt (@mcdeezyarmsobreezy) on

You should bring a large variety of entertainments. Sometimes you’ll want to work hard (I took the opportunity to finish the 1100-page Infinite Jest). Other times, you’ll want an escape: I’m halfway through the Fast & Furious series on Blu Ray–the perfect combination of action and ridiculosity, for light hospital viewing.

With all these options, staying in the hospital for a month is only about as bad as living in a really chill, minimum security prison.

And rather than being shanked, the biggest pain is that the door to your room may as well be a revolving one, as nurses, doctors, lunch ladies, cleaning ladies, more nurses, and even more doctors barge in and bug you constantly. Overall it’s great to get such attentive care, but given that they never have any actual news, you will sometimes long for the days when you could find 30 uninterrupted minutes.

6) CHAMPIONSHIP: Engraftment (Day ???)

Not there yet, but when we see those counts come up soon, I’m gonna need you all to storm the court with me.

It’s taken a village to get this far, and I must say the best decision I’ve made on this journey was to share everything via my blog. To my fellow patients: if you’re able, please share what you’re going through, whether in a full-blown blog post, or a simple Facebook update. It will bring support into your life that you had no idea was out there, and it will help the people who care about you to understand the strange and terrifying journey one goes through, living with a rare disease. Even if you think of yourself as a total introvert, TRUST ME, there are many, many people who care about your well-being, and they will give you support when you need it most. This is the time to lean on friends & family.

someone told them my biggest interests were pizza, surfing, and basketball.

They were told my biggest interests were pizza, surfing, basketball, and movies.

The people in my life continue to be so awesome, but the best, most unexpected message came from my elementary school alma mater, Lester C Noecker School in Roseland, NJ. My brother-in-law Jim’s sister Susan teaches there, now, and had about 60 young students make their own cards for me.

Hence the surfing, hoops-shooting slice of pizza who's also watching a movie.

Hence the surfing, hoops-shooting slice of pizza who’s also watching a movie.

They arrived the other day during lunch and blew me away. The innocence and positivity behind the kids’ messages has been so inspiring, they make me smile all day long and are easily the coolest thing that’s ever happened to me (and I once drank fine wine in a Cannes chateau with Elvira, Mistress of the Night!).

The other best thing is that my wife, Stephanie, is here, staying with me. I tell her in private all the time, but I just wanted to say publicly that I love her the way Paul Walker and Tyrese’s characters love each other in 2 Fast 2 Furious, but are afraid to admit (I may have read too deeply into the subtext, there).

It's a tough road, but I don't have to drive alone.

It’s a tough road, but I don’t have to drive alone.

Mentally, I work towards engraftment every day. I meditate and picture healing white light entering my body–it calms and focuses my mind. I certainly have fears, and lots of available time to dwell on them, but somehow I don’t. Somewhere along the line, I’ve decided to only think about the problems that actually come up.

Maybe Noecker school taught me to live life to the fullest, or maybe, more recently, living deity Dom Toretto/Vin Diesel showed me how to “live my life a quarter-mile at a time.” Either way–it’s working.

Here’s to a fast & furious recovery.

quartermile at a time


For those of you who are new to the blog, thanks for checking it out. If you want to catch up on my journey, here are some handy-dandy direct links to my older posts:

A Bloody Mess— My first post, written from my hospital bed upon learning of my rare diagnoses, last October.

On Goodbye and The Abyss— Reflecting on mortality and the loss of my aunt.

Don’t Be a Jerk, Be the Match— On the importance of joining the the bone marrow donor registry. Please share this one, and join if you’re eligible.

Everything is Awesome, Even When it’s Not— On counting my blessings, and receiving a major stroke of good luck.

Making Plans— On deciding between ATG and Bone Marrow Transplant options.

Thank you for reading, everyone, and don’t forget to leave a comment!

Making Plans: ATG, or Transplant?

Gr Canyon Raft4:45 am. A year ago, I got up before 5 in the morning, just to make a phone call. Actually, I made about two hundred and seventy-six phone calls.

Ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah-ehr-ah. When was the last time you HEARD a busy signal? I still hear one, thinking of that morning.

For years, Stephanie and I dreamt of hiking to the bottom of the Grand Canyon and staying at the mythical hotel there, the Phantom Ranch. Tens of thousands of others shared our dream, which is why you have to call at exactly 5am to book…13 months in advance.

After hitting “call” repeatedly for more than an hour on two iPhones, I finally got through and booked a room for two nights, beginning March 22, 2015. We knew the school where Steph works would be closed for Spring Break, and figured I could arrange my freelance schedule accordingly.

“When else can we KNOW we’ll be able to take time off, a YEAR in advance?” we asked ourselves, thinking we had it all figured out.

A lot can change in a year.

Now, it’s looking like I’ll be on a much less scenic vacation this March, nursing a white blood cell count of zero at my favorite all-inclusive resort.


To bring you up to speed—Soliris, the IV drug I receive once per week, is doing its job and neutralizing the dangerous effects of PNH. However, my blood cell counts have still been in a sorry state, thanks to Aplastic Anemia (AA). Blood and platelet transfusions still run my life and keep me hooked up to an IV at the Cancer Center for 8-9 hours at a time, sometimes. A second bone marrow biopsy (they kept me awake this time) revealed only minor improvements in my bone marrow—not enough to signify a recovery.

While I feel fine (aside from the chronic fatigue, the existential dread, and the fact that I occasionally fart blood)–ultimately, this treatment method is unsustainable.


Thus, Decision Time. The two treatments offered for AA are Immune Suppression (in the form of horse-serum drug ATG), and Bone Marrow Transplantation (BMT).

The ATG requires a week in the hospital, followed by 3-9 months of waiting for levels to return to normal. It works about 50-60% of the time and would only treat the AA/bone marrow failure, not my mutated PNH cells.

Transplant, on the other hand, is the only known cure for both AA and PNH—albeit one with a survival rate (not success…survival) rate of 80-90%, for those lucky enough to have a matched sibling donor. A Bone Marrow Transplant would mean at least 1 month in the hospital, for me. First, I’d receive a week of heavy chemo, to “nuke” my bone marrow and empty it out completely, making room for the Donor cells. I’d then receive Meghan’s cells via an IV, and spend the next three weeks waiting for the donor cells to “engraft.”

During this time period I’d essentially have no immune system, and be susceptible to infection. The people who die from transplant generally die from these infections, or the later complications of Graft Versus Host Disease (GVHD). It takes about 100 days, post-transplant, to recover, followed by a year of close monitoring for chronic GVHD, which can strike at any time and effect your body in a mind-boggling assortment of ways, some of them potentially fatal. On the plus side, there are ways to manage most of these complications.

Most importantly—post-transplant, my white blood, red blood, and platelet counts would return to normal–I’d be cured.

This is me, making big decisions.

This is what I look like, making big decisions.

So…just make a decision, right? Well, for better or worse, I’ve always been someone who has to examine a problem from every angle…

We’ve seen 15 doctors. Gotten 2nd and 3rd opinions from specialists at USC and City of Hope. Read all of the transplant and ATG research on the National Institute of Health’s web site. Talked to thriving transplant survivors, an ATG patient who’s living a very full life while managing PNH, and read terrifying transplant-gone-bad stories on

Though I’d leaned towards transplant since December, facing the decision head-on meant acknowledging the very real risks…

I’d be facing a 10%-20% chance of being deceased, and some day very soon. As I’ve said before, if you got on a plane and the captain announced you had a 90% chance of reaching your destination alive, you’d be trampling old ladies to get off that damn plane.

Sure, the doctors think I am young and relatively healthy, and the fact that I have a perfectly-matched sibling donor is a huge stroke of luck. But still…What if the presence of PNH causes adverse effects? How are things so completely out of my control? And how can I trust my body at all, after how it’s betrayed me?

Man…shit is real, in these streets.

I considered ATG. The fact that nobody really dies from it. Would I be CRAZY to go through with the transplant and risk leaving Steph behind? To say goodbye, after a decade of hard, lonely work, having never even made one of my scripts into a movie, or published a book? When there’s an alternative that won’t KILL me?

I bargained with myself, “Couldn’t I just try the ATG, and if it didn’t work, then do the transplant? Wouldn’t that improve my overall odds? And 3 extra guaranteed months of life—at least I could finish my short story collection…”

Of course, ATG has its own risks. 3 to 9 months of waiting for blood counts to recover would mean a boatload of additional blood transfusions and, with a suppressed immune system, a real risk of serious infection. Even in recovery, I’d still be tethered to my weekly Soliris IV, with a 50% chance that I’d relapse, or worse—progress to MDS or Leukemia. I might end up putting a ton of rough miles on myself before eventually doing the bone marrow transplant anyway.

There is one expert I haven't consulted

There is one expert I haven’t consulted

I reviewed every single thing a doctor had told me these past 4 months. Got lost in 5-hour Internet research labyrinths. Took extremely long walks, searching my head for clues—anything that would make this choice easy. Laid awake at night, fearing what could happen to me. The stress revved up my PNH and made the fatigue even more debilitating than usual. I lost control of my moods, snapping at people for almost no reason–“This must be what Kanye West feels like all the time,” I thought.

Eventually, I accepted that I have the shitty luck of having this disease…with either treatment, something must be risked. The alternative isn’t pretty. I thought about how Dr. Lill and the Brotherhood of Hematologists didn’t come to their conclusion lightly—if you’re under 40 years old, with a perfectly matched sibling, you go with the BMT.

And, after a heart-to-heart with my wife, I remembered how much I believe, in my gut, that a transplant will work.

I decided to go through with the Bone Marrow Transplant.

I’ll be admitted two weeks from now, and spend the month of March at Cedars-Sinai Medical Center. It’s terrifying to take this leap of faith and face my mortality head on, but ATG felt like kicking our problems further down the road. To turn down a chance to be cured, just to bargain for a few extra months or years…what if things progressed to Leukemia, at a point when we had kids to look after? My kids are going to need lots of supervision, if they inherit my mischief and pyromaniac genes.

So…I’ve spent my adult life taking risks—moving to LA, building a freelance business, writing screenplays on spec—what’s one more?


Between 2-3 weekly hospital appointments (8+ hours, sometimes), the ups and downs of chronic fatigue, and the paperwork…I’ve also had to put my freelance writing & video projects on hold, and let a comedy directing opportunity pass me by. But, no use wishing things were different. Acceptance is one of the keys to all of this.

How about I do both? That Franklin dude lacked ambition.

How about I do both? That Franklin dude lacked ambition.

On the plus side, I started writing a new book series I’m really excited about—it’s sci-fi/fantasy, and it’s also a detective story with lots of big laughs. It might be a little bonkers, and you might need to accept that. Should be available later this year—I’ll keep you posted.

Right now, I’m just trying to do the things I love, and stay on an even keel. We may not be hiking into the Grand Canyon this year, but I’ve got my sights on another trip: June marks the 100th anniversary of the founding of Fairview Lake Camp in New Jersey, where I spent the best summers of my life as a camper, a counselor, and a unit director.

To be able to return for the Centennial Reunion would be more than a nostalgia trip—that place stoked my love for the outdoors, sharpened my sense of humor, and taught me how to be a leader. To be in nature, surrounded by the most fun-loving people I’ve ever known…that would make all the months of isolation worthwhile.

They say it takes about 100 days, post-transplant, to return to normal activities. The big alumni reunion comes about three months, or 90 days, after my transplant. Here’s hoping I’ll be a week or two ahead of schedule.

2002 Fairview Staff. I'm in the back middle, w/the luxurious hair--can you spot all three Fro Bros?

2002 Fairview Staff. I’m in the back middle, w/the luxurious hair–can you spot all three Fro Bros?


It’s really awesome that people have gotten involved. Many of you have signed up for the Be The Match Bone Marrow Donor Registry–all of you people are the best. My brother Neil even held a swab session, signing up donors at his office. If you haven’t signed up yet, it’s super-easy to do from home and could very easily save a life.

My sister, Meghan, who is for real about to save my life, will be running in the LA “Hope, Steps, and a Cure” 5K for Aplastic Anemia, this April 25th in Long Beach. I know many of you are runners, it would be so great to have some more support on our team–Aplastic Anemia is a brutal, invisible disease, and we could really use your help raising awareness and funds for the fight. To get involved, email Meg.

Also, PLEASE keep donating BLOOD & PLATELETS. I’ll be getting transfused EVERY DAY during my one-month transplant stay. I also accept moral support: prayers, positive thoughts, likes/shares/retweets, Giants Super Bowl DVDs, and Spotify mixes. It works, and I feel stronger because of all of you.

I’m not sure how much I’ll be able to write and share during the transplant process ahead, but I want you all to know I am entering it feeling very positive. I’m in good hands with Dr. Lill at Cedars, and I’ve got a ton of support from family and friends. I know there are risks, but whatever comes up, I really believe I’m going to make it through. Stephanie and I will do our best to keep you informed re: my progress.

Love y’all.

Everything is Awesome, Even When It’s Not

I spent two whole days making these piles, now you have to look at them.

I spent two whole days making these piles, now you have to look at them.

Hey folks. I would’ve written sooner, but I was buried under a mountain of Hospital and Insurance paperwork.

So, how am I doing?

I’m pissed. I had already started a big essay on gratitude and how you should always count your blessings, no matter what problems you’re facing–and then I got one of the most undeniable blessings of my life.

Well, writing is hard, and I’m not gonna let some good news screw up a perfectly good blog post, so I’ll save the news for later.

For now, I’m going to expound upon…


Shit happens.

Personally, I’m dealing with PNH and Aplastic Anemia, but it’s been an extra-specially shitty year for a lot of people. Michael Brown. Robin Williams. Harold Ramis. I’ve seen old friends pass away far too soon. Serial rape, mass murder, and the worst of humanity are constantly present in our lives.

For some, even the Cowboys losing to the Redskins can be pretty tough.

At times like this, it’s easy to feel like the whole world is burning. But guess what?

There has ALWAYS been shit.

For all human beings, since time immemorial. And there will be plenty of shit in the future. But if you’re reading this, you’re STILL HERE. Don’t forget THAT shit.

And if I’ve been able to keep MY shit together, I know you can, too. We’re all much tougher than we think or feel.

So when you feel like you just can’t take this shit any more, remember that all you can really do, is keep putting one foot in front of the other–which is also the only thing you can do when shit is awesome.

So let that shit swirl around, and try to appreciate your life for a minute, shithead.

Now, as required by my elementary school teachers, I’m listing the things I’m thankful for.

– I’m thankful for meditation, which allows my frazzled mind to find rest. For a westerner’s look at Zen and getting centered, I recommend the classic Zen in the Art of Archery. [Bonus: only 70ish pages].

– For my friends and family, who’ve sent food, given blood, and sent hundreds of messages online–I really can’t quite put it into words, how much you’ve actually given me strength, but thank you. Many of you have been swabbin’ cheeks and takin’ names, for the Bone Marrow Donor Registry–know that you are doing a great thing.

For those who don’t realize just how easy it is to join, my brother Neil shows you here—the cheek swab takes about 30 seconds.

I'm not proud that others' misfortune puts me in such a better mood, but I am grateful.

I’m not proud that others’ misfortune puts me in such a better mood, but I am grateful.

– I’m grateful for the little things: the fact that Sour Patch Kids get quite a bit softer if you leave the package in the sun for 25 minutes (NOTE: This may also cause cancer), and that my badass, cancer-surviving Uncle Joe, emailed me the picture at right.

– I’m grateful for the privileged perspective I’ve been given by these chronic conditions. I may be emotionally hardened, but I’ll never again take life for granted, or let it kill my spirit. It’s grounded me, revealed my priorities, and focused my writing, which allows me to deal with it all through something I enjoy.

– I’m grateful for modern medicine, and the doctors who’ve made it their life’s work to treat Aplastic Anemia and PNH, which is so rare that many doctors have never heard of it. I was diagnosed within 36 hours at Cedars, and after 4 weeks on Soliris (which took 14 years and $1 Billion to develop), my level of red blood cell destruction (hemolysis) has returned to NORMAL! This means I’m no longer at increased risk for deadly blood clots or stroke. It’s not the Mardi Gras-Shaming, Party-throwing result I mentioned, as my bone marrow condition has not lifted, but we’re on our way to the good news…

– I’m very thankful Stephanie and I are GOING HOME FOR CHRISTMAS this year! We’ll be memorializing Aunt Anne instead of laughing and arguing with her, but we weren’t even sure a trip would be possible until Dr. Lill decided to hold off on my ATG treatment (immune-suppression…a week in hospital & 3 months of drugs) til after the holidays. But even that is not the good news I was alluding to…

The test results are in, and my sister Meghan is a MATCH.


That means, if we end up going through with the bone marrow transplant, there’s no need for a long, anxious search—we know who my donor will be. Now, if the ATG doesn’t work…I’ve got a trump card. I’m a “hope for the best, plan for the worst” kind of guy–well, “the worst” just got a whole lot better, and my hope is feeling stronger.

Meghan was a 1-in-4 chance to be a match, and this after I just hit a 1-in-a-million rare disease diagnosis.

The McDevitt hot streak continues.


Those of you who’ve yet to sign up to Be the Match may now be saying, “Well, my friend doesn’t need my help, I don’t know if I want to go through all that for Joe Schmo.” Did you think you were gonna be a match for ME?? That is a 1-in-a-quintillion shot, my friend.

This was ALWAYS about Joe Schmo. I’ve seen, read, and heard a lot about people who’ve gone through transplants without a perfect match, and there is a very high rate of intense suffering and mortality. You can save a real person from that fate.

And since I consider transplant patients to be a huge segment of my audience, you really would be helping me. I mean, I finally found an AUDIENCE, and it’s like, 20 people who have my rare disease. So if you could help them stay alive, that would be huge for my career!

It’s easy to sign up, and I promise you the donation process has almost no downside. So don’t be a jerk–swab like it’s your job.

Knowing that I’ve got my match, I feel a HUGE sense of relief–I hope my fellow patients feel that same relief soon. I am extremely, extremely BLESSED, and I want you to know–I would’ve felt that way no matter what the results were.

"Adult human people who purchased season passes to 6 Flags"

Adult human people who purchased season passes to 6 Flags

This process has been a rollercoaster ride (super-original metaphor, right?? Let’s freshen it up and say it’s a mine cart ride), and I feel like Steph and I have reached the crest of that BIG drop–we can finally see what’s ahead of us, and the tracks don’t look quite as rickety as we feared.

The carts in front of us even seem to be landing in one piece. I’m gonna be okay.


As grateful as I am, it’s hard to fully process the good news, amidst all the shit

So I’m just gonna hold my hands up outside the cart, take the plunge, and SCREAM the words to this song…

Everything IS awesome–whether you’re down or you’re celebrating.

Happy Thanksgiving, folks.

Don’t be a Jerk. Be the Match.


First off, thanks to all of you who offered sympathy regarding my Aunt Anne, who passed away yesterday.

My family appreciates your love and support at this difficult time.

Second, I’ve been home from the hospital for a week now. At first I felt a little like Brooks, from The Shawshank Redemption, unable to adjust to a world that had moved on without me. Confusion and anger swirled in my head, “There’s an iPhone 6? The iTunes logo is RED? Wait, WTF is an iPhone 6 PLUS??”

My family is heartened by this bizarrely appropriate Facebook ad.

My family is heartened by this bizarrely appropriate Facebook ad.

Somehow, I’ve found a place in this gigantic-phoned world (seriously, why does any sane person need a phone that big?). Figuring out non-hospital meals was tough at first, but–big shout outs to Jackie Levine for bringing meatballs, Alex Burke for her enchiladas, and Matt Olson/Owen Sidd/Hannah Walker for their manicotti–I’ll be back in the hospital with Diabetes before you know it!

I’ve actually been back to the hospital most days, getting blood drawn, more chemo, and a platelet transfusion. I’ve managed to resume work, though, and a routine is starting to take shape. My weekly Soliris chemo treatment is working well on the PNH, but we’re taking a wait-and-see approach re: its effects on the Aplastic Anemia.

In the meantime, my doctors and transplant team have begun working on finding a bone marrow transplant match. My beautiful, brilliant, all-around wonderful sister Meghan (those w/older sisters know how important it is to stay on their good sides) is being tested now. If she isn’t a match, we’ll begin searching for an unrelated donor.

Which brings me to the question that is the crux of this post…

Are you a jerk?

No? Then,


360 people each day are diagnosed with life-threatening blood cancers and disorders. On October 23rd, I became one of 360, but to you guys I am not a statistic. Neither are the 6,120 people who’ve been diagnosed since.

Our only cure is a bone marrow transplant.

Inside of you is a replenishable resource that could save my life, or the life of someone else with a devastating diagnosis. My transplant team is working with the Be The Match bone marrow donor registry, which you can actually sign up for in a couple very easy steps.

Transplant team, assemble!

Transplant team, assemble!

The register for Be The Match, go here. The online form takes 5-10 minutes. They’ll send a cheek swabbing kit to your door. You send them back your sample, and you’re in the registry without even leaving the house.

Only a small percentage of registrants are actually called upon to actually donate their marrow, but EVERY SAMPLE IS IMPORTANT AND IS A POTENTIAL LIFE-SAVING MATCH FOR SOMEONE. The donation procedure itself is routine–I had a similar operation for my bone marrow biopsy, it was over in an hour and I felt no pain at all afterwards. A small price to pay, to SAVE A LIFE.

Again: You’ve saved a fucking life. You must feel so awesome, having given new life to someone with a potentially fatal disease. Wait, you haven’t joined yet? Well, get on it!

I’m begging you, don’t be a jerk. Be the match. Sign up today.

If you have more questions, check out Be The Match’s Frequently Asked Questions page. And if you’re one of the absolutely goddamn everyone on my Facebook newsfeed who’s expecting a baby, please consider donating your baby’s umbilical cord blood. It could save your child’s life, or the life of a stranger.


Many people have also asked about donating blood. Blood donations save lives every two seconds in this country, and you can super-easily find your nearest local blood bank/blood drive using the Red Cross’s locator here. And don’t forget to donate platelets, which I’ve been gobbling up like Jackie’s meatballs lately.

If you are interested in “Directed Donations” (ie – giving me your blood), you can find more info from Cedars-Sinai here. By the way, I’m a B+ (yes, even my blood is telling me to “be positive” right now–I’d love to backhand my blood, but my platelets are low and I’d get a huge bruise). Directed donations aren’t necessary, but I guess it would be pretty cool if your blood ended up in me. We’d be blood buddies! Or would it be bloodies? I dunno, but it’s all super fun! :) :) :)


Anyway, donating blood is important, but my focus here is to get you to sign up for the Bone Marrow Registry. It’s one of those things where we say “I should do that,” then let ourselves off the hook by thinking, “I’ll sign up when I get some time.” Then, we forget about it because we just got a text on our gigantic phone. This mindset doesn’t do anyone any good. Get yourself signed up NOW.

Because you are NOT a jerk.

Once you’ve signed up, please “like,” SHARE, and comment on Facebook. Let everyone know you’ve signed up to Be The Match! You and your friends could save a life TODAY by joining.

Thanks again for all of your interest in my blog, the response has has filled me with so much strength for the road ahead. You’ve shown me why we’re all on this planet–we are here for each other. Thanks for reminding me. Don’t stop.

On Goodbye and The Abyss

Anne (at center) and us

Anne (at center) and us

My Aunt Anne died this morning. She’d be angry if I said her exact age, but suffice it to say she touched many lives over her roughly three quarters of a century.

My mom’s older sister has been a trusted confidant and role model since I was a baby. We kids loved her for her boundless generosity and sense of fun. When I was 17, I somehow even convinced her to give me her car–permanently, no strings attached.

“You promised I could have it!”

“When you were 10!” She replied, “I didn’t think you’d remember!”

When I won that argument, my family forever assumed I’d follow her footsteps as a lawyer. But Anne was always supportive of my unconventional choices. As an adult, she was the first family member I ever showed one of my screenplays–I lit up like a child when she told me how much it made her laugh. It was one of my great honors, at Anne and Uncle Gil’s wedding, to walk Anne down the aisle–or the dock, really, as she arrived by ship and nearly took a dip before my brother and I steadied her.

That was about the only time she ever asked for help from us. Anne Marie Kelly was as self-made as it gets–she worked long hours to put herself through both college and law school at night. She gave the NJ Attorney General’s office four decades of service, hardly ever using a sick day in her pursuit of civil rights for all New Jerseyans.

Stephanie and I stayed with she and Uncle Gil just a few months ago, on our way to a friend’s wedding. She threw a party, as she always seemed to do when I was in town, and that night made a purely antagonistic point of rooting for the New York Rangers against my wife’s beloved LA Kings in the Stanley Cup Finals. Even though Anne was the staunchest New Jerseyan I’ve ever known, completely incapable of watching a New York Giants game without pointing out that they should be called the New Jersey Giants, she was willing to root for my Devils’ biggest rival, just to needle the both of us.

Anne, Gil, and our nephew Finn

Anne, Gil, and our nephew Finn

She was stubborn, a dedicated progressive and a relentless instigator, who hid a heart of gold beneath that sarcastic Jersey shell. I can only hope to have inherited a few of those traits. The world has lost a very special lady, and I’ll miss her especially at Christmas, which she, Gil, and their tropical birds have hosted for as long as I can remember.

And somehow, I can’t bring myself to shed a tear.

Maybe I’m numb. Maybe this month has toughened me up. Maybe I’m just convincing myself I’m “strong” so I don’t fall apart.

Maybe writing this blog is the only way I’m able to feel anything right now.

Or maybe it’s that we’ve been bracing ourselves all week. Anne entered the hospital while I was in my own hospital bed, 3,000 miles away. By the time my parents arrived, straight from helping me move back to my apartment, her moments of lucidity were fleeting.

After a few days, we learned that previously-undiagnosed cancer had spread from her breast to her spine and lungs. Within three days, she was gone.

My closest aunt is dead, and I can’t even cry.

“Men tend to cry, in Landsman’s experience, when they have been living for a long time with a sense of rightness and safety, and then they realize that all along, just under their boots, lay the abyss.”

– The Yiddish Policeman’s Union, by Michael Chabon

Maybe it’s just that I’ve already seen the abyss.

I’ve tried my best to get some distance from that first week I spent in the hospital, when I felt death’s white horse approaching. When I saw doctors’ eyes go wide, upon looking at my charts. When they braced me for Leukemia. When I was sure the blood transfusion reaction I was having would be fatal.

I tell myself it was all just a story that happened to me one time. But, once seen, the abyss doesn’t go away. Only your illusions and false sense of security do.

Do not forget that life is precious, promised to no one. Only one thing is promised us all.

Anne at our wedding

Anne at our wedding

Aunt Anne lived a full life. She is and will forever be beloved and remembered fondly by her family and numerous friends. We’re all terribly saddened by this loss.

And I am thankful for the life she had. That she had a chance to touch all of our lives. That she did such great work for the people of New Jersey. That she always made my brother, sister, and I feel special. That she gave a reading and hit the dance floor at my wedding this summer, as happy as I’ve ever seen her.

Saturday morning, Anne made an informed decision to forgo chemo for her metastasized breast cancer. She knew what the transfer to hospice care meant.

Anne knew it was her time, and she faced the abyss as bravely as I would expect.

Anne, Ben and Ethan walking to the bay to see the sunset