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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?

 BEDBUGS: A TRAGEDY IN FIVE ACTS

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?)

image10

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:

image18

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).
 Advantage:
 √ 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.
 Advantage:
 √ 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.
“L-I-V-I-N”

 

Kevin McDevitt is a Kevin McDevitt blogger at kevmcdev.com–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 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.

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

7) ONE BRIGHT SHINING MOMENT

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!

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

A Bloody Mess: Or, Why I’ve Been in the Hospital for 12 Days

Medieval Hematology Joke
It’s not Ebola.

It’s also not Leukemia. In fact, that’s how the phone call that changed my life began.

October 23, 9:25AM: Phone rings in hospital room:

“Kevin, this is Dr. Nassir. You don’t have Leukemia. You don’t have cancer. What you have are two rare blood disorders. You have PNH (Paroxysmal Nocturnal Hemoglobinuria) and Aplastic Anemia. PNH is destroying your red blood cells and puts you at risk for deadly blood clots, while the anemia means your bone marrow is depleted. In fact, it is severely depleted–a normal guy your age should have 35% bone marrow–

You have 5%.”

Dr. Nassir told me he’d gather a team of rare blood disorder experts, and get me more info later in the day.

You may find it odd he delivered that news over the phone. Well, my wife and I have a theory: Dr. Nassir, my Hematologist-Oncologist, is known for only visiting the hospital after midnight. We’ve actually only seen him between midnight and 1 AM. So, he’s only seen only at night, and he’s made BLOOD his life’s work…do I have to draw you a picture? The guy’s a vampire.

Dr. Nassir and I

Dr. Nassir and I

Anyway, after some Internet rare blood disorder cramming (have a seat, if you’re about to do the same), I spent the morning pacing the halls of Cedars-Sinai, trying to get my head around my diagnosis. On the one hand, I’d rather have what I have than Leukemia, which was what the doctors and I were fearing. On the other hand, I’d also rather spend a solid year being kicked in the nuts repeatedly while ex-girlfriends belittled my penis size than have Leukemia.

After a hospitalized week where the rug was pulled out from under me, to be diagnosed with two very rare blood disorders–you’re more likely to WIN AN OLYMPIC MEDAL than end up with PNH– the dearth of clinical history means still more uncertainty.

As a wise, spiritual man told me recently, “Human beings can handle anything, but uncertainty is the hardest. We crave control.” There’s nothing harder than not knowing what’s going to happen. But that’s life for all of us–it can change in a manner of minutes. I went to the Emergency Room on Sunday October 19th, still elated from my Oktoberfest birthday celebration the night before.

photo (3)

photo (2)

photo (1)

I decided to blog about all this because:

– I want you, the people in my life, to know what’s going on. Explaining all this crazy, at times life-and-death blood stuff over and over takes its toll. I’d love to get to a place where I can have FUN conversations with people again, know what I mean? So I figure if I explain everything here, everyone who’s interested will know my status by the time we talk.

– I haven’t done much writing since I’ve been in here, and that’s a problem. It’s good to get back to work and focus my mind–I think it’ll be a big part of keeping me sane in the weeks and months ahead. Writing about what’s on my mind helps me to make sense of it, helps me find connection, and allows me even to see the humor.

– In sharing this incredibly trying saga, I hope that the next person who goes through it can take some comfort and learn from my experience. Last week was a total nightmare, but this week has been a little better, with a plan in place–a plan, and lots of alarming conversations about blood counts, a few additional transfusions, and a chemotherapy regime that’ll probably make me sterile (note: I got to do some “family planning” for the sperm bank, so I’ve got that going for me, which is nice). Hopefully next week will be better too, but again…uncertainty!

NO.

NO.

I’m 32 and did not expect to have to deal with this stuff. No one does. I know I’m not the only person going through this, but PNH and AA are rare, and I’ve yet to find many accounts from the trenches of the fight against them. So, in the interest of keeping friends and family informed, here are the answers to some frequently asked questions:

1) “So, how ya doin?”

Physically, at this moment, I feel 100% fine. It’s the weirdest thing, to have two life-threatening conditions and not show any signs of it (aside from some strange bruises).

Emotionally, it’s been a process. I’m working my way through the stages of grief. I’m exhausted from constant stressful talks with Doctors and Nurses, who bust into my room with no warning, at all hours of the day, giving blood transfusions in the middle of the night and bugging me every 30 minutes for vital sign checks, blood draws, shower reminders.

Shit can be really, really dark around here at times. But I make sure to have a good laugh every day. I meditate. And I remember the words of Rust Cohle: “You’re looking at it wrong. Once, there was only dark. You ask me, the light’s winning.”

My wife Stephanie makes it easy to remember the light’s winning–like Peter Quill’s father, she’s an angelic being of pure light. She’s been by my side every step of the way, spending most nights and days at the hospital. I am in awe of how she weathers this storm of suck on a daily basis, and has the strength to bring me all of the love, support, courage, and LAUGHS I need. All things considered, I’d say we’ve been enjoying our second honeymoon at the all-inclusive Cedars-Sinai resort.

2) “What kind of danger are you in?”

Significant danger.

PNH can lead to deadly blood clots and other complications. 10 years ago, average life expectancy with PNH was only about 5-10 years after diagnosis. Recent drugs have improved that outlook and neutralized PNH’s effects. I’m on one of them (Soliris) now, and we expect it to keep the PNH at bay, though it is one of the most expensive drugs on earth and I’ll have to get infusions every other week for the rest of my life.

That leaves my severe Aplastic Anemia, which has a five-year survival rate of about 70%. The effects of bone marrow failure are wide-ranging, but I’ll try and summarize. White, Red, and Platelet cells are all created within your bone marrow. Aplastic Anemia and other bone marrow disorders (like Leukemia) result in a deficiency of all of these cells.

Low white cells mean an increased risk for infection. Hence, I have to wear a mask when I leave my hospital room, and I can’t be near sick people.

Anemia Cartoon

Low red cells mean not enough oxygen in my blood, resulting in me getting light-headed often. It probably results in other, worse things, but lets move on.

Platelets allow your blood to clot. If you get a cut, platelets stop the bleeding. A normal platelet count on a CBC (Complete Blood Count–they draw this once a day) is between 150 and 450. My count has been as low as 10 these past couple weeks–I’ve had two transfusions to boost them up. They’re fine for right now (37), but when they get to 10 or 20, I have to be extremely vigilant about the possibility of internal bleeding.

3) “What’s the Prognosis & Treatment?”

I plan on living a long time. Believe me, I do. But this is some scary shit. It’s a little less scary knowing that the doctors have a plan, but a positive outcome is not guaranteed, and none of these treatments purports to be 100% effective.

I’m hoping upon hope that Soliris (Eculizumab) neutralizes the PNH and allows my bone marrow to flourish once again, but this is far from guaranteed. Soliris/Eculizumab is only prescribed for PNH, not Aplastic Anemia. My doctors hypothesize that the AA was caused BY the PNH, so there’s a CHANCE this one medicine will clear up both. If this happens, I would throw a party that makes Mardi Gras look like Bible Camp. (Note: I will probably wear a mask to this party).

If Soliris doesn’t clear everything up, the next step would probably be ATG, an immune-suppressive therapy. That can be pretty debilitating, as they essentially knock out my immune system, in hopes that’ll spur it to rebuild itself. This treatment usually plays out over a period of months.

If ATG doesn’t work, we’ll be thinking about a Stem Cell Transplant (aka Bone Marrow Transplant). This option could CURE both conditions, or it could kill me. Like everything else with this blood stuff, it’s complicated. I’ll try to summarize:

Snowman Stem Cells

First, they need to find a Tissue-Type Match. They’ll start with my sister (a 1-in-4 chance for a match), then widen their search to the donor registries. This can take a long time. Sibling transplants are considered less risky (5-10% mortality) than unrelated donors (15-20% mortality).

If I get a transplant, I’ll be in the hospital for about a month. First, they’ll use some pretty strong Chemotherapy to REALLY knock out my immune system, preparing me for my shiny new one (well, I guess it’s technically “Used”, but it’s new to me).

Then, they’ll infuse me with the donor’s stem cells.

Then, I’ll park my ass in the hospital, basically under quarantine so as not to get sick, as the new-to-me immune system builds itself up. There’s a high risk for infection, and most transplant patients get sick at one point or another. A roller-coaster ride is to be expected.

Evil blood cell

The big fear is something called Graft Vs Host Disease (GVHD). That’s when your old and new immune systems turn on each other…this can be bad news.

The first 100 days can bring what’s called Acute GVHD. This is the less life-threatening version. From 100 days to 400 days is where things can get really fucked up, with Chronic GVHD. Chronic GVHD brings most of the mortality.

Therefore, a Stem Cell Transplant is NOT a magic bullet. Or more accurately, it IS a magic bullet that you get shot with and wait a year to see if it decides to kill you or not.

The bright side: If you make it through to the other side of this, you’re cured.

Thank you for reading this far, I know it’s all very heavy. I’d love to make a few more jokes and laugh it off, but there’s no getting around how long and hard the road ahead could be.

The good news: the odds say I’d “probably” survive the transplant. Somehow that’s more distressing than comforting. I mean, if you boarded a cross-country flight and the pilot said “Welcome, ladies and gentlemen. As we prepare for takeoff, I’m required to inform you that this plane has a 20% chance of exploding in a fiery cataclysmic crash before we reach JFK. The good news is, we’ll probably make it”–you’d trample everyone on that plane to be the first one off, right?

Well, that’s not an option for me right now. All I can do is listen to my doctors and follow their best recommendations. I feel powerless, at the mercy of these diseases and how they interact with my treatment, but I take a lot of comfort in the fact that Dr. Nassir and Dr. Lill (a rare blood disorder/transplant expert) are the best possible doctors I could’ve landed with. Dr. Nassir may be a vampire, but he’s also a beast–the war stories I’ve heard of his saving cancer patients would amaze you. Dr. Lill is at the top of his field, and one of his severe Aplastic Anemia transplant survivors actually became nurse here at Cedars’ Oncology wing, 8 years after her transplant. I’ve met Jenny, and she’s a huge inspiration to me.

survivor-logo

I’ve got a long road ahead of me, but all I can do is put one foot in front of the other and stay grateful for this beautiful life I’ve been given. I take comfort in the fact that, whatever happens, I’ve spent my adult life living in the moment and making the most of every day. This may sound cheesy to some, but it’s allowed me to stay happy, and not be paralyzed by fear, grief, and sadness in this stupid hospital.

4) How’d you end up in the hospital in the first place?

This is part of the longer story of my first few days in the hospital, which I plan to get into when it’s not quite as raw.

Short version: Sunday morning, 10/19, after breakfast, I felt some phlegm in the back of my throat. I spat it into a tissue, and it was quite bloody. I freaked. For the next two minutes, all the saliva I spat was RED. We rushed to the emergency room, where the bloody spit continued. They took a blood draw, the results were alarming, and here we are…

5) What can I do to help?

Right now, you can comment and/or “like” this post. (Don’t worry, I’ll interpret it as “I like this positive outlet you’re finding on the Internet,” and not “I like that you have contracted two life-threatening diseases.”) This will help ensure my post gets seen by family and friends–I’d rather people hear what’s going on from ME, and not thirdhand.

Humbled as I am by this experience, I’m no longer shy about asking for help. I will take whatever encouragement you want to give. And it’s okay to say “OMG THAT SUX,” because yes, friends, this very much sucks…but, when loved ones tell me I’m not going through this epic suckitude alone, it has a way of really picking up my spirits. Believe me, your words are comforting. Don’t stop.

And don’t stop making jokes and sending me stupid videos, pictures, memes, whatever. I need as many laughs as I can get.

save_a_life_join_the_registry_bone_marrow_donor_magnet-p147118528663617468envtl_400-300x300

You can also help in a very concrete way–donate blood and get yourself on the bone marrow donor registry!

Both are extremely simple to do, carry no risk to the donor, and can very well save a life. I plan to gather all of the relevant instructions in my next post.

Stay tuned, people–I promise to try and keep everyone posted on how I’m doing in this battle.

Kevin