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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!

Comments

comments

7 Comments

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

  1. Robbie Stewart says:

    kevin, you are a funny sensitive writer and I love reading about your journey. All the pain and worry is worth the end result. Thank god for your sister, your lovely wife and all the people who love.. Hang in there baby

  2. Lydia says:

    Stay Strong Kevin
    Praying for you!

  3. Steve Place says:

    I’m glad I had the chance to read your blog Kevin. I wish you all good things and a speedy recovery!

  4. Kevin.....It is a remarkable journey,especially when you look back on it several years up the road says:

    Kevin…..It is a remarkable journey, especially when you look back on it up the road

    love

    Buddy

  5. Leslie Hasty Militzer says:

    Thank you for sharing your journey, especially the gruesome details. It helps us understand a little bit of what you are going through. I have been watching a diabetes webinar that I would have found helpful if it had been around back when we went through the complications with George, my husband as he fought his disease over the years. I’m sure your blog will help many others find the courage they will need. Find time to watch Norm Crosby for some intelligent humor. Heal though laughter.

  6. Hadley says:

    I’ve just been diagnosed with PNH & AA two weeks ago and seeking treatment at NIH. Even though I am uncertain about my future, I know I am blessed to be getting the treatment I am and to even be alive. As I lay here wide awake in my hospital bed after taking my nightly dose of ATG Cylosporine.. I have found so much comfort in your optimist, humorous and inspirational blog posts. Thank you kevin. You have encouraged me to stay strong and even start my own blog about my journey in combating these rare blood diseases. Best wishes and God bless.

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

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