The Blog

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.

[END “UNAIRED” POST]

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.

Comments

comments

9 Comments

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

  1. Ray and Terry Ford says:

    Sounds like a great book that we would love to read. Your writing is wonderful Kevin.
    Stay strong, you are in our prayers each day.

  2. Robbie Stewart says:

    Great writing as usual. Sometimes during the reading I think I have an inkling of what you are having to endure. Then, I slap myself and try to wake up to reality – I don’t know anything. If to suffer is human, it makes me wonder what paradise must be and in paradise do we stay human. Who can say. My thoughts are with you . Hugs

  3. Melissa Little says:

    I praise you for writing this. It made me cry and laugh for the first time in a long time. Coming from having a BMT 7 months ago, and still struggling with red cells not producing, blood type not changing, my anti bodies fighting my unknown donor cells, and platelets still low. Is just the tip of how things are. Then there is the constant tiredness. The mental part of this, the dark cloud, and loss of joy you describe so perfect. I hate not being able to explain to my loved ones how I feel. Or why answering a simple text bothers me. So Thank You for writing this, and giving people a better understanding, along with giving me something, someone I can relate to. I’ll keep you in my thoughts, and if ok, I will pass on the site to other BMT patients. Who may have a hard time finding the words to help loved ones understand.

    • Kevin says: (Author)

      Thank you, Melissa. I appreciate the kind words and would encourage you to pass my posts along. And I know I haven’t posted recently but I should be rectifying that soon (like, maybe tomorrow actually). I write this blog so we don’t have to be alone with these experiences. Wishing you all the best in your recovery, it is a long road but I can tell that you’re a fighter like me. I’m so glad we could connect in this way. Stay strong.

  4. Arline says:

    Thank you for writing Kevin. It has been 109 days since my BMT, related to AML. Your article hit it right on the mark, in so many areas. First, freedom from the hospital staff. What is weird is I’m an ICU RN. Driving in the car with the fresh air was so great. Being able to sleep through the night. My first salad…Yum. Sending my male 19 yo donor a Thank-you note for my life !!! No real GVHD issues, except silght rash. Getting cut back on visits from twice a week, to once a week, to every other, to now every 3 weeks. I look forward to getting off all there meds and having my triple lumen taken out. Please keep writing. I’ll keep you in my thoughts and prayers…

  5. Tony Gallagher says:

    Hi KevMcdev,
    Just reading to see how I can help my sister. She had a BMT 21 days ago. Engraftment was on day +17 with plenty of white cells and neutrophils now. However she has life threatening issues with the chemo. Your blogs help me help her. She had AA and PNH. I was the donor. Thanks for the articles as I am trying to see things from her perspective. Tony

  6. Es says:

    My 31yo son had a BMT 4+ months ago, and has had significant GVHD. I only today thought of looking for a chimerism blog and found your blog. And I thank God for this post. As a very empathetic person I can easily imagine that pretty much every single thing you wrote, he’d relate to…still has his trifusion line. At home (YAY!) but has 3 appts a week for labs. Getting TPN at home for the first time, in the hopes that he won’t languish for weeks in the hospital. The PTSD…yes, that explains it. As his primary caregiver I’m feeling it too… I’m not looking for sympathy either, but it is my reality.

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