Life is a multimodal corridor

Every so often I find myself using some form of the sentence construct “Life is…”

I often end the sentence with a simple, “so hard sometimes.”

But if I’m feeling profoundly unable to describe what I mean, what it is I want to say about the broad topic of life itself, I’ll just borrow from the immortal words of Tom Cochrane: Life is a highway.

At some disorienting point in every life, the presumption of safety is revealed to be an illusion. At this moment, the familiar building blocks become unfamiliar, strange. The light shifts or the borders bubble at the edges.

At twenty five, I felt sure that I was destined for a straightforward path: that I would continue to rise in politics and settle down with a partner and family as soon as I’d established my wildly successful career. This path felt so assured that I hardly stopped to think about it.

For those with difficult or tragic childhood experiences, the illusion of safety disappears early. The rest of us learn at some point in our adult years that loss, pain, wrenching break ups, violence, physical and mental illness are features, not bugs. Even the best, longest lives carry their own intrinsic griefs.

As the writer and cancer survivor Suleika Jaouad says, so much of life is “holding the really beautiful things and the deeply cruel, profoundly hard things in the same palm.”

Life is a highway.

And, like a highway that one can ride all night long, life is filled with traffic jams and collisions, GPS failures and way too many pee breaks.

But on the highway, the sameness unfolds indefinitely. The ribbons of road unfurl themselves through high rock walls carved into mountains, forests, rest stops resplendent with golden arches.

Life is so much more textured than that.

Through my job, I’ve come to understand far more about transportation policy, about the needs that every road user has — pedestrian, bus riders, people on bikes, wheelchair user and driver. The need for roads to have speed humps and bike lanes, dedicated bus lanes, wide sidewalks. Streets like these are referred to as “multimodal” because they’re safe and convenient no matter what mode you choose to travel in. All of us must share the space, find our way to navigate through. Yes, there are challenges; but also moments of great joy and cooperation as we move through.

It’s now been about a year and a half since I’ve last written on this blog. But I’m still here, muddling along, sharing the road.

It’s been hard lately to grapple with the level of suffering and violence in the world; not a new phenomenon, but one that we can never, and should never, grow accustomed to; one that will always spark horror, anger, fear and profound sadness.

But in the midst of this I’m as happy as I’ve ever been. I live close to my family, including my new nephew, who brings us delight with his wild giggle and his scooching, crawling and babbling. I love my work and have the opportunity to improve our city. I have the best partnership I could imagine.

My illness has shown me that this happiness rests on a foundation of the unexpected: That the most shocking things can and do happen. As the songwriter Bully so eloquently sings:

Will you be there when I make it home?

And how will I know? How will I know?

The answer, of course, is that we can’t ever know. We just have to keep going.

A Birthday Post

As I write this, I am exactly 17 minutes away from turning 33. This is the first birthday in which the age that I am turning has daunted me a little bit.

33.

Not so scary: Pleasingly symmetrical in shape. Divisible by two prime numbers. And yet: I am no longer in my early thirties. It seems like a stretch to lay claim to any kind of youth. Whatever life is at this moment in time is not just a “phase” or a “transition” or a “period of growth,” but, well, my life. My real, actual adult life.

When I got sick, I had just turned 26, which in itself felt like a fairly monumental birthday. Two years of treatment later, I was 28, without having moved forward in any tangible, externally marked way. I felt as if those two years had simply evaporated. It felt strange when I had to introduce myself to strangers again and all of a sudden I was 28. Hadn’t I just been 25?

And yet: I felt lucky to be 28. I felt lucky to be ok and healthy. As I reminded myself, it was better than the alternative. (Which is, of course, becoming a vampire.)

I was also still half-convinced that something terrible would happen and I would wind up back in the hospital, despite the assurances of my doctor. The frequent panic attacks over my health crowded out more banal concerns about the inevitable march towards old age.

I was still figuring out how to be in this mysterious new body that didn’t always cooperate; to live with the whiplash of becoming a sick person and then becoming a survivor. In some ways, those years were too much of a blur to reflect. I was muscling through.

Now, at 33, I have breathing room to pause and think about what it means to have lived 33 years on this particular planet. When I was 26, I thought a lot about how I hadn’t yet achieved everything I wanted to; now, I think more about experiences I want to have, ways I want to help shape peoples’ lives.

When I was sick, I often made mental bargains with no particular entity, promises of eternal gratitude and appreciation if everything just turned out okay. Unsurprisingly, it hasn’t always stuck (see my last post on gratitude journaling).

But it does tend to work on birthdays, when I can take a pause to reflect, to think about how lucky I am to have more time to grapple with this beautiful, frustrating, inexplicable world.

So. 33. I hope my birthday grants me a hall-pass for this more than slightly corny post. Happy to be here and for all of the possibilities still ahead.

On Gratitude

Recently, I purchased a gratitude journal. It’s a particularly beautiful Easter egg blue with gold lettering and a blue-gold swirl pattern along the spine. The journal leaves space for a list of three items you’re grateful for, just two quick lines for each day.

I bought it because I haven’t been feeling especially grateful lately. I’ve been going through a period of difficulty and growth, my first truly significant one since becoming sick. After being ill, I assumed I’d handle any challenges with the perfect, beatific equanimity of a survivor. Wasn’t that, after all, my silver lining?

Well, as it turns out, no. I’ve been trying to remind myself that if I had told my past self that I’d be here, alive and remarkably well 5+ years later, dealing with all of the difficult and beautiful aspects of being alive, I would have been overjoyed. But it’s hard to shift perspective. Hence, the gratitude journal.

So most days, dutifully, I’ve been chronicling whatever gratitude-inducing thing comes to mind about my day, whether it’s a lunch in the sunshine or a song I adore. According to my journal (which admittedly has a self-interested motive for claiming so), gratitude journaling is good for your mental health and even motivates you to exercise more. Not sure I believe the latter, but it can’t hurt.

(Also, just yesterday as I was finalizing this post, I got a newsletter from a writer I admire so, so much, Suleika Jaouad, author of one of the best memoirs I’ve ever read, Between Two Kingdoms. I would highly recommend this memoir for anyone dealing with illness, has a loved one dealing with illness, or anyone alive, really. And, for those interested in engaging in some sort of creative way with illness, isolation or difficult periods, her newsletter The Isolation Journals is amazing!)

In the spirit of my gratitude journal, I’ve been reflecting on the bigger picture of the changes I’m grateful for after having experienced serious illness in my twenties. Here are a few:

The ability to adapt to changing circumstances: The rug can’t really be pulled out from under me, because I no longer hold the illusion that the rug is in fact under me The most shocking things can and do happen. I find myself able to respond to and accept change, even when it’s difficult.

A deeper empathy and connection with others: Having been through a difficult experience, I relate and connect more deeply than I once could to others who have been through challenging times. I understand not just theoretically but from cold, hard experience the essential importance of showing up for friends when they’re struggling instead of shying away. And I treasure my family and friends even more from how they showed up for me.

Knowledge of my own courage: I totally understand when people don’t like being called courageous for having sought treatment out of necessity. HOWEVER, I’m claiming this one. Having had to consciously and knowingly face a scary situation made me aware of how much I was capable of getting through. And, it never hurts to urge myself on by saying, “You got through transplant. You can get through this.” This works on the truly hard life moments, but it also happens to work for online exercise tapes.

To be clear, there are SO MANY THINGS related to illness that I’m not remotely grateful for, and am in fact quite bitter about. This list is a lot longer than the gratitude list.

But sometimes, especially through life’s inevitable challenges, I’m grateful for these hard-won tools. And, for now, I’ll be out here gratitude journaling…

—

People living with illness or survivors: How do you approach a “gratitude practice,” if you have one? What are you grateful for? Bitter about? Write me at sarah.anders@5-years-later.com and let me know 🙂

On anxiety/trauma after transplant

Anxiety first descended on me in adolescence, tied to the usual horrors of seventh grade: mysterious body changes, birthday parties with my name left off the list, having no one to dance with during the snowball portion of the Bar Mitzvah (a very Brookline problem, as our Bar/Bat Mitzvah circuit was pretty much as robust as wedding season today). As I got older, my mind would find new concerns to latch onto—whether I’d accidentally left the oven on, for example, or if I could be split in half in a New York City elevator.

Then I got sick. I think on some level, I had once believed that my fears were a protective spell: As long as I’d at least considered the possibility that a disastrous event might occur, it couldn’t actually happen. After all, life isn’t usually so on the nose. But when it came to recognizing actual symptoms—bleeding gums, leg bruises, constant exhaustion—the same anxious instincts that had me running back to my apartment to double check the stove hadn’t kicked in.

So there I was, that first time, in the emergency room. My primary care doctor had handed me a printout of my blood tests and told me to pick between Weill Cornell and Mt. Sinai.

“You could have leukemia!” he had helpfully informed me before I hopped into the longest cab ride of my life. I sat on one of the beds crammed into the hallway while people moaned and groaned like we were in one of the literal circles of hell (which the ER in New York City might in fact be.)

My sister held my hand. They had given me a magical pill I’d never heard of called an Ativan, which slowed the rapid beating of my heart. People kept coming by, but none of them were the doctor. As ever on hospital time, things moved slowly then all at once. When I finally asked the Physicians Assistant the likelihood that I had leukemia, given what my primary care doctor had said, she decided to administer a bone marrow biopsy ASAP to try to end the suspense as soon as possible.

They moved us to a corner of the hallway and pulled a curtain around us for privacy. I rolled over onto my stomach, purposely not looking at the tools in the PA’s hands.

The feeling of the bone marrow biopsy, which I would come to know quite well, was shockingly literal: that of someone taking a massive power drill to your hipbones. As I grasped my sister’s hand even tighter, the PA said: “I find it’s often worse for the person watching.”

“I think it’s worse for her,” my sister said faintly.

That was the first memory of illness that embedded itself stubbornly into my memory, but the brain grooves of anxiety would deepen in the months afterward, with each weekly appointment to monitor fluctuations in my blood counts.

First, I would go to get an IV put in, just in case they needed to transfuse. Each week, I would request the same nurse, Danny, who ran my arm under warm water to help the veins pop before gently sliding in the needle.

The real terror would start on the hematology floor, waiting to the see the doctor. My mind would spin with scenarios: what if my counts were down, if I have to go to transplant, if if if if…

When the numbers finally came in, I would analyze every tiny fluctuation—despite being told explicitly by my doctors not to—riding the highs of every increase and the lows of every dip. The counts actually told a consistent story: Upon initial diagnosis they had worsened, then began to climb a bit and stabilize after treatment, finally dipping once again after I went off immunosuppressant drugs. But it was hard to step back and see the bigger picture with endless numbers to obsess over and treatment decisions that none of my doctors seemed to agree upon to make.

Thinking about it now, I went back and found a little poem I wrote about my Wednesday appointments that pretty well encapsulates how I was feeling at the time (terrified, depressed, and more than a little bit dramatic). I’m including it below though it’s extremely embarrassing (I only deleted a few of the most atrocious lines.) (And that is just how much I value you, readers of my blog!)

A Case of the Wednesdays

Neutrophils – the same.

Platelets – up a little.

Red cells – down as always.

Me – down as always.

How long do I have to wait, I wonder,

for my hematocrit to be adequate?

How long until I can leave this

hospital-of-the-mind behind?

Ever since that day in August I’ve been trapped in a white room.

The view’s never half bad.

Prognosis – the same.

Worry – up a little.

Months – count down as always.

Me – around the house as always.

Try not to read too much into it. Read a novel instead.

Wednesdays are always the same,

whether or not I move the timing up a little.

Breathlessly, I’m sinking down as always.

Emerge with a gasp before I drown, always.

—

So basically yeah, that was where my head was at.

Luckily, the support services at Dana-Farber were incredible. I was assigned a social worker I adored, who suggested that I see both a therapist and a psychiatrist. Between the three of them, I got on anti-anxiety medication and started figuring out some strategies to cope with my worst fears. Just at the moment of greatest need, I had access to the best mental health services I’d ever had in my life.

When I realized I had to move to transplant, my therapist helped me ready myself emotionally (click here for more on my pre-transplant journal and other preparations). My social worker also connected me with a mentor through the Imerman Angels program (which I would HIGHLY recommend) who had been through a similar experience ten years prior and speaking with him, hearing about the fundamental normalcy of his current life, helped enormously.

However, when I got home from the hospital, desperate for anything other than overboiled pasta and sad wilted broccoli (though do not sleep on hospital milkshakes!), some of the worst mental health effects began to emerge.

My numbers looked good, I had no graft vs. host disease and my doctor was quite pleased. But every single time I stepped into the cold fluorescent office, I felt like I was going to faint. No amount of deep breathing could stem the dizziness.

It all came rushing back: The first night in the hospital. My weekly visits. The phone call after which I decided to move to transplant. One image after another paired with a cell-level knowledge that this could be the moment that everything changed—again.

There were yet more numbers to obsess over, T cells and chimerism, none of which I understood but all of which had some sort of predictive power over outcomes if you read the dense NIH studies, which I tried to do, and which only made things worse. I hated the studies. Not only could I not understand them whatsoever, but patient deaths were always mentioned casually, tossed off as a percentage.

These are people, I wanted to scream at the studies. They have hopes and dreams and other people they love and things they want to contribute to the world. The studies didn’t care. They were just trying to do their job, which was to measure the five-year survival rate based on chimerism three months after transplant, or whatever it was that they were measuring.

I remember asking my Imerman Angel mentor when going to the doctor’s office got easier.

“Well…I don’t know if it ever really goes away. I still hate going to the Doctor’s office,” he said.

I hated to hear that, but in my experience it has more than element of truth. After all, fear isn’t tied to reason or logic—it’s tied to life experience and temperament, none of which is under our control.

About a year and a half ago—four years after transplant—my amazing transplant doctor, without any sense of ceremony, mentioned that I didn’t have to come back to see him.

“You can if you want, but you’re fine,” he said, as if we were discussing the weather.

I didn’t mention that I’d been clutching the seat in terror before he stepped into the room.

These days, I have fewer moments where the memory feels so vivid that it could have just been minutes before, where the terror floods back in as though it had never left. I see all of it differently, as if through plastic.

But trauma doesn’t move in a straight line. I’ll be fine the majority of the time and then sometimes a memory—a song I listened to a lot in the hospital or even that particular antiseptic hospital smell—will arise, and a wave of fear or grief will just pass over me.

Recently I was getting an extremely minor wrist surgery, and lying on that surgery bed under the warmed blankets, waiting to enter the OR, I remembered being in that same type of bed, having just gotten my lines put in the day I was admitted to the hospital, waking up with blood-crusted floppy tassels coming out of my chest.

Completely normal things to be thinking about as you wait for wrist surgery.

But then sometimes I’ll be in a waiting room and it’s taking forever and, as I read a trashy book on the kindle app on my phone, all I can think about is how inconvenient it is, how long it’s taking, the ambient noise of the phone ringing and the please hold and the bubbling of the water cooler, how I wish they would just move more efficiently. I’m going to be late for work.

—

If you are a current or former patient and you are wondering if you should email me, the answer is YES! That is a huge part of why I am even writing online, is to connect with you! There is a 100% chance that I will respond. I’m at sarah.anders@5-years-later.com.

Today

Just now, I decided to lean into the blog aspect of this blog by writing about my day today. I don’t want to always share personal essay type things that could have been written at any time. Otherwise what’s the point of having something you can update in real time? (“But Sarah, why didn’t you think of that before starting a blog to share essay type writing?” OK, imaginary critical voice in my head, you win this round!)

ANYWAY, I want to share with anyone reading how normal life can be five years after illness (to the extent that anyone’s life is normal in this profoundly not-normal world we live in).

So here goes:

I woke up and it was a chilly April day on the verge of being nice. It has been almost spring for so long that I have forgotten what winter is and what spring is and have only been existing in this liminal space between seasons that is absolutely impossible to dress for.

It was kind of sunny but crisp and I jogged for a few minutes in the arboretum before realizing that I was going to be late for a conference call if I continued much longer.

So I got ready and took the call and then embarked on the 15-minute walk to the orange line. Part of me wishes I lived closer to the train, but I also love walking through my neighborhood every day, seeing the same pickleball games and stately houses and impeccably groomed dogs.

Every morning, it’s an exciting gamble as to whether or not a beautiful, brand new state of the art orange line train will arrive or a slightly run-down train car with the seats covered in bristly carpeting and somehow, mysteriously, not arrayed in a straight line, but instead jutting in and out like crooked teeth. Today it was an old orange line train.

I arrived at Boston City Hall, a brutalist behemoth structure that the Mayor famously adores. I have to admit that since starting working there in November, it’s grown on me, with all the hidden corners and nooks and art exhibits and poems adorning the wall.

After years of doing high-pressure, high-stress communications work in government where you are always on, always ready to answer an inquiry at 11 o’clock at night or first thing in the morning, never not checking google alerts, I now have a job where I can make a big impact on an incredibly important area of Boston’s civic life (our streets!) and don’t have to feel like a steady stream of cortisol is being pumped into my veins on a minute-by-minute basis. It is the best.

I met my friend Daniel for lunch at the brand new restaurant, Zaz, on the 8^th floor of City Hall, and we ate outside in the rectangular roof courtyard in the sunshine, and it was delicious.

Later, on the way home, I listened to the song Too much by Carly Rae Jepsen, on repeat, and stopped at a local market to very responsibly pick up a green vegetable. (Is it unseemly to pat yourself on the back for eating vegetables in your thirties? If it’s wrong I don’t want to be right.) Then I made dinner and caught up with an old friend on the phone and now here I am.

And in fact, I thought about Aplastic Anemia exactly twice: First, somehow, randomly on my way to the train home I thought about the two shiny, miniscule button scars on my chest from where the ports went in (no idea why) and then now, sitting down to write this post.

On Fatigue

The word fatigue describes an exhaustion so severe it can only be medical. No one just randomly says, “I didn’t sleep well last night, I’m so fatigued.” It has to be an ongoing state, something that seeps into your bones, to really be fatigue.

It also sounds vaguely exotic, because it comes basically right from the French language without any changes. If you say “Je suis fatigue” in French, it means, I am tired, but also kind of seems fitting as it almost seems like the sentence would translate to “I am fatigue,” and sometimes fatigue does feel like a more a part of ones’ identity than a transient state.

I also just looked it up and apparently the French word derives from Latin “fatigare,” meaning “to make weary,” which also fits because fatigue, like weariness, seems to go so much deeper than just the physical feeling of being tired, but also feels like a kind of existential exhaustion. Not just tired, but tired of the world being how it is, tired of activities you once found energizing, tired of dealing with a body that won’t do all the things it once did, that yawns as often as it breathes.

I have never exactly been the paragon of energy (my sister made fun of me when I was in college thanks to my proclivity for 9+ hours of shuteye a night), but the fatigue I began to feel when I was, unbeknownst to me, getting sick, was a different beast entirely.

I just assumed that the rigors of my job were finally catching up to me. I was the Communications Director for a New York City Councilmember, a job I had earned by serving the same grueling role on his campaign and which I was excessively proud of. The low pay and long hours were just a fact of life in that legislative body (which has since unionized – go NYC Council legislative staff!), so it wasn’t rare for me to come home late and handle emails long into the evening. The local councilors were often the first point of contact for journalists for comment on any neighborhood news, so press calls could and often did pour in at any hour of the night or morning. I was 25 years old and also trying to keep up some semblance of a social life, so it was perfectly natural to be tired, I thought.

But was it normal to stare at a screen, facing the prospect of writing another mammoth e-newsletter – the kind that had once come easily to me – in pure dread?

Was it normal to try to spend an evening walking around Central Park before going to a friends’ house and becoming so weak with exhaustion as the day faded into purplish twilight that I had to lie down, resting on my boyfriend’s shoulder and staring up vacantly at the sky?

I remember when the Doctor called me in urgently with my blood results and told me I had to go straight to the ER.

“Your hemoglobin is 8.5,” he said. “If I had that hemoglobin level, I’d be on the floor.”

But I wasn’t on the floor. I was still going to work, applying for other jobs (I had just accepted a new one), seeing friends. Though in another way I was on the floor—the floor of the subway car, because I had started having to sit down on my busy commute to work and there were often no seats. Not normal.

My relationship with fatigue changed after realizing that it was derived from something specific. Though that’s kind of funny, right? That I needed a medical permission slip to accept how absolutely flat-out exhausted I was. I think so often we ignore the messages our bodies are trying to send to us, assuming we can override them if they don’t make any sense.

After I was diagnosed, I began to allow myself to drift off in the afternoon, sometimes waking up with a thin spool of blood staining the pillow (low platelets = gum bleeding).

After trying antibody treatment, my red cell counts temporarily stabilized but never really recovered, so I was fatigued a lot. (With the brief exception of the week or so that I was on steroids after that initial treatment. Wow, when you are on steroids you feel like you can take on the world in a ragey, scary, laughing hysterically kind of way.) As I made the decision to move to transplant, I started to get excited about the possibility of the full recovery of my energy—of being myself again.

But months after I returned home from the hospital after transplant, my counts having normalized, I was still fatigued. There were so many extenuating factors, it was impossible to determine whether the fatigue was related to transplant or to the antidepressants I now took for anxiety; the preventative antibiotics I remained on; burnout related to my constant state of panic; etc. etc. etc.

I did a lot of googling about fatigue and post-transplant life, in part because I was anxious that it meant some kind of relapse of illness, despite Dr. Antin reassuring me that such a result would be incredibly unlikely, and in part because I had the feeling like the kid in the backseat of the car after the dentist, still on anesthetics: “Is this gonna be forever?”

His ever-practical (and also incredibly helpful) suggestion was to develop a regular exercise routine. Ironically, making time for exercise—which can seem like a burden to fit into a busy life and is the last thing anyone wants to do when they’re fatigued—has been by far the most reliable way I’ve ever found to stimulate energy.

I was in grad school at the time, a choice I made because I felt like diving right back into the chaotic, stressful world of politics might break me in half in my fragile state, while at least in grad school ones’ time, decisions, and the grades that resulted were ones’ own.

Sometimes, sitting in the library, I allowed my eyes to close, exhaustion settling over me like a warm blanket, as I listened to the banter of the undergrads. (“That bar is so full of old people, dude, everyone is like 25!”) But sometimes I’d have a rush of energy and feel so healthy, so normal, that I wondered if the previous few years had been a bizarre nightmare.

The truth is, my fatigue got much better after adopting exercise and resting when I needed rest – but it’s never fully gone away. It comes and goes in waves, and I’ve found that the only thing to do is to let it wash over me.

Even though I worried about my ability to keep up in the high-speed world of political communications, it hasn’t affected my ability to do challenging, fast-paced work. And while I wish I could say I’ve always been a paragon of self-care in the weirdly adrenalized environments of campaigns (not sustainable indefinitely for almost any person), I always prioritized getting a full nights’ sleep, without which – on top of being miserable – I wouldn’t be able to function at my job.

I remember the wonderful social worker in the hospital who always wore impeccable sweater sets saying that bone marrow transplant can feel like investing a year of your life to buy back your old life. In some ways that’s true. But you are also buying a new life—a strange, sometimes beautiful, sometimes fatigued life that doesn’t just reset to how it was, but moves forward on a path that can never quite resume in a straight line from where it began.

I’m super interested in other peoples’ experiences with fatigue after transplant or illness. How has it affected your life, if at all? How has it evolved over the years? Please feel free to email me at sarah.anders@5-years-later.com – I’d love to hear from you!

Join the Bone Marrow Registry

I mean this quite sincerely: Receiving the gift of bone marrow from a stranger was one of the most incredible experiences of my life. Just knowing that someone wanted to commit an act of generosity and love for a complete stranger—no strings attached, not wanting to know what kind of person I was or if I was worthy, but just because I needed it—gave me the hope to power through that difficult post-transplant year.

Because while, yes, swabbing ones’ cheeks to join the bone marrow registry is super easy, the actual process of donating is, well…a process. It involves going through a series of tests, preparing for the procedure, and then extraction of marrow under sedation, which is bound to hurt when you wake up. The idea that there was someone out there who would do that—thousands of someones, in fact—made my brain cells explode.

I had the opportunity to write to my donor during the year of recovery and he wrote back, wishing me well, urging me on. During the peak of my anxiety, studying the careful handwriting of his letter helped me focus on the people in my life who were rooting for me.

I finally had the chance to meet my donor at a charity event for Gift of Life, the organization that found my match. This event was so special on so many levels, but most of all as a chance to meet my donor and his family.

My donor turns out to be one of the coolest people you will meet, ever. He is just a lovely, kind, chill, successful person who hates attention. (At a charity event that was basically all about how amazing he was he completely eschewed the spotlight.) Even though he is a bit younger than me, he always acts like a real grown up. We met for lunch once and he insisted on treating me to sushi and when I was like shouldn’t I buy the handrolls because you saved my life and all he was like whatever no and just put down his credit card. So I won’t use his name because I think he would be embarrassed but even though we don’t keep in close contact every time I think about him I feel happy because the world needs more people like him.

So anyway not saying my donor being awesome is a reflection on me but we do share 12/12 Human Leukocyte Antigen Markers, so YOU DO THE MATH.

While I obviously overall hated the entire experience, receiving marrow from a stranger is something that will stay with me forever, not just in my literal immune system but also imprinted into that part of me that is over and above whatever my synapses and cells and muscles and bones are doing, which is to say—on a soul level.

If you are reading this but not because you are dealing with a super serious illness, then you too can be like my donor and save a life. At either of the following sites, you can get a swab kit mailed to you:

https://www.giftoflife.org/

https://bethematch.org/

It is tremendously important because there are many, many people who don’t have matches in the registry. In fact, this is yet another circumstance where there is severe disparity based on racial and ethnic background. Grappling with the need for a transplant is traumatic enough without also having to worry if this life-saving treatment will even be available.

If you’re able, you should absolutely join the registry and let me know if you did so in the comments. (“But Sarah, this is not 2010 stop trying to make blog comments a thing.” MAKE ME!!)

It’s not every day in this troubled world that you have the opportunity to do something so purely selfless and good. Why not go for it?

Preparing for Transplant

I desperately did not want a bone marrow transplant. In my mind, it was a horrific worst-case scenario, something to be avoided at all costs. Because Aplastic Anemia is likely an immune disorder, the standard of care treatment for patients with Aplastic Anemia for a long time involved suppressing the immune system with horse or rabbit antibodies. This treatment was developed by Dr. Neal Young (who, yes, shares a name if not a spelling with the famous musician) in the 1980s, when bone marrow transplants were far more risky than they are today, and Aplastic Anemia was a death sentence.

The antibody treatment is much less severe than transplant – people don’t really die from it, ever, and it has a good chance of working, at least for a time. (It is not, as the doctors would say, “curative,” and it would have to be monitored, but its positive effects could potentially last a lifetime.)

At the time that I was sick, there was a promising clinical trial at the NIH that treated people with ATG (horse antibodies!) and another drug that would stimulate bone marrow cell production. It seemed to work even better than the traditional formulations of antibody treatments.

Once I made the decision to try that first, we quickly made arrangements with the National Institute of Health, and later that week we were driving to Bethesda, Maryland—I couldn’t get on a plane with my platelets so low. A friend of a friend of a friend offered my parents a place to stay. It was a house that her recently deceased mother had been living in. My family and I were floored by this extraordinarily lovely gesture, just one example of many kindnesses from dear friends and strangers alike that helped us get through.

I was fantastically lucky to be at the NIH. Because they only do clinical trials, the care and medicine is 100% free. No co-pays, no insurance companies involved. All medication is free and they send you home with months’ worth of supply. The rooms are spacious and painted in bright, optimistic colors, rather than the sterile white of traditional hospital rooms. The food is actually good. Like, edible breakfast sandwiches good.

Because I wasn’t fully immunocompromised, I could kind of wander around the NIH, eating takeout with my family in different rooms of the hospital, or listening to the classical musicians who would play in the lobby. I didn’t think I looked super-sick—maybe kind of pale—and I wore my regular clothing, too, so I fantasized that people just thought I was a visitor.

Me at a bench on the NIH’s pretty grounds, looking normalish

On the other hand, the people could be a bit cold. We were asking if my parents would be able to stay at the housing for young adults and teenagers for future visits, because the cut-off was 25 years old and I’d recently turned 26.

“What do most families in this situation do?” I asked.

“Most families of 26-year-olds don’t have both their parents come and stay with them throughout their treatment,” the social worker snapped. (Haha—good thing this woman will never know that now, at 32, I’m still on the family cellphone plan and recently took a vacation with just my parents.)

But overall, it was not a terrible nine-day stay in the hospital. I figured that in a matter of three months, I might be cured and back to normal, living in New York City and resuming the new gig I had just started. (I worked in political communications, and at the time, the idea of taking a year off from my nascent career was almost as unthinkable as the transplant itself.)

But as time went on, I wasn’t improving as much as anyone would hope. I had stabilized to the point where I didn’t need transfusions to survive but beyond that, my counts didn’t continue to rise. And as they tried to taper me off the immunosuppressants, my blood counts got worse. The final straw came when they found some sort of mutation of unknown import that could be a precursor to leukemia—but then again, it might not.

I’ll never know why it didn’t work for me but worked so well for so many others. (An absolutely wonderful college student I met at the NIH seems to be thriving all these years later.)

I told my hematologist in Boston that I was thinking of moving to transplant—the thing that I had been most dreading. He thought the decision made sense.

“You’re alive,” he said, “but you’re not really living.” As a former philosophy major, I was vaguely familiar with the concept of bare life and didn’t want it to apply to me.

I was re-reading Deathly Hallows at the time and felt like I was Harry Potter, walking into the Forbidden Forest to meet his death. (And no, as a millennial, I will not “read another book.”) It felt so unnatural to me to check myself into a hospital so they could blast me with chemo and radiation, making me substantially sicker before I could get better.

I was incredibly lucky in that the transplant for aplastic anemia, developed in part by my incredible doctor, Dr. Joseph Antin, had a very high chance of success and survival. But as with any risky and potentially even life-threatening procedure, it was scary.

Just as Harry summons the ghosts of his loved ones to protect him, I felt I needed protection as I prepared for this metaphorical battle.

My therapist, Dr. Karen Fasciano, offered incredibly practical, helpful advice. She advised me to create a journal of things that sustained me: quotes, poetry, life events, photos. Then in it, she advised, I should also include letters from my family and friends, words of encouragement and love that served almost as a protective armor against the difficulties of the weeks ahead. It felt strange sending out a mass email asking for love letters, but so, so, so good to receive an outpouring from those who were in my corner. Oftentimes, people just want to know how best to help, and this was a concrete step I could give them to show their love for me.

This journal was incredibly sustaining – first, as something to do in anxious pre-transplant moments; second, as a way to summon words of encouragement and love from my support network; and finally, as a reference point during the long weeks in the hospital, when I needed a reason to slog through another day of nausea and exhaustion.

How to make your pre-transplant journal

Decide what format you want. Do you want it to be a folder, a notebook, lined or unlined? Will you hole punch or paste your letters in? Will you draw your quotations in gel pen or type them up and print them out? Purchase materials accordingly.

Send a note to family and friends requesting these letters. Here’s the one that I sent:

“Hi dear friends,

As you know, I will be getting a bone marrow transplant this summer, a procedure that involves a fair amount of time (2-4 weeks) in the hospital and in recovery (~100 days for the most intensive recovery and then a fair amount of time after that too). I am on track for a June admission date (roughly June 6, though nothing is fully confirmed).

Anyway, through all of this so far, you guys have been such a great support network and I could really use your help to keep that going here, too. To that end, it would be really incredible if you could send me any personal notes, quotes, poems, prose or whatever you think might be helpful for me to have on hand. I am planning to use the next few weeks to make myself a sort of notebook/compendium of happiness I can bring with me to the hospital! (If you couldn’t tell—and I bet you could—this suggestion comes directly from my therapist.)”

Your note definitely doesn’t have to echo mine, but it should be a fairly direct and specific ask for what you need and when you need it by. I was blown away by the love that poured in, by email and by snail mail, and it helped give me strength in that scary time leading up to the transplant.

Think back to what inspires you. What books, poems, stories, advice and ideas have constituted the fabric of your life? What words or images make your heart soar, allow you to make sense of the stormy and chaotic moments? Gather these.

What moments in your life do you want to remember—accomplishments, experiences, friendships, travel? What souvenirs do you have that remind you that when you get out of the hospital, you have a life ahead of you—time to go to concerts and see natural wonders and fall in love? Gather these.

Now it’s time to assemble. As a very uncrafty person, I basically slathered all my items with glue pen and stuffed them messily into a notebook. But if you are creative with scrapbooking, I can imagine creating an aesthetically beautiful album of some kind. Create something that makes you happy, that you will like returning to in difficult moments.

Bring it with you. I packed my notebook and brought it with me to the hospital, but I rarely looked at it. Just knowing it was there—a shield that I had built for myself out of my own experience of the world and the support of those I love—fortified me.

I’m curious: Did any of you have any rituals preparing for transplant that helped give you strength for the journey ahead? Anything that you are planning to do to prepare? Comment or drop me a line (sarah.anders@5-years-later.com) to let me know.

Five Years Out From Bone Marrow Transplant

This past summer, I celebrated five years post bone marrow transplant. It was a milestone I had pictured so many times, but when it came, it felt like more of an exhalation than a celebration. Oh, I thought. I’m happy to be here now.

So why am I writing this now, five and a half years later? When I was sick with the rare disease of Severe Aplastic Anemia* (idiopathic – a fancy word for we have no clue why the f this is happening to you), I searched for hours for blogs and forums and information, for someone to reflect back to me what I was going through with a happy ending. Sometimes I found happy endings and sometimes I found sad endings, and my family could usually tell when I had been on a search binge because I had the disturbed, haunted look of someone who had seen way too many stories of illness in a short period of time. Then they would confiscate my computer and phone.

Oftentimes, people came to these forums in moments of distress, so their comments and questions did not reflect best-case scenarios. But whenever someone would comment with a note that they were three years out, five years out, a decade or 20 years out from transplant, my heart would sing. There is a life after this. There is normalcy, whatever that means in a world that’s fundamentally not “normal.” There is hope.

I also found some blogs that I liked to read and seeing other young people with similar life outlooks and in similar situations as I was in felt like a lifeline. My favorite was a blog by Kevin McDevitt, then a recently married writer/creator whose anxieties and frustrations felt all too relatable. (That blog appears to be gone now, but his hilarious music video parody of Taylor Swift’s Bad Blood is still online!)

At the time, I never wrote publicly on what I was going through, aside from a one year out post on Facebook or emailed medical updates to my friends and family. I felt too raw, too terrified. But over the summer, I posted something more public about my five year transplant-iversary and people reached out, some with their own stories of illness, blood disease and transplant. And hearing from people who had a loved one struggle in some way, or who had been through something similar, was incredibly healing.

So the idea came to me to write about some of my experiences as a way of connecting with people dealing with aplastic anemia or bone marrow transplant or just a challenging moment in life.

But Sarah, you might ask, why a blog? This isn’t 2010. Can’t you just come up with a cool app?**

Unfortunately, I don’t have any cool app ideas. All I have is the desire to write down my experiences and share them so that other people feel less alone. I also have zero technical skills. So here it is. My blog, about ten years too late for the zeitgeist.

People living with aplastic anemia, caregivers or survivors of aplastic anemia: Please feel free to reach out to me. I’d love to hear from you about your experiences, emotions, stressors, goals, plans, etc. etc. etc. I can’t answer medical questions, obviously, but I am here to serve as a resource and a happy story of successful treatment (there are many of us!)

* Real quick, what is aplastic anemia? It’s when your bone marrow basically stops doing its job, leading to a shortage in:

Red blood cells: The cells that give you energy

Platelets: the cells that clot after injury, preventing major bleeds; and, most crucially,

White cells: the cells that fight infection and disease.

**My good friend Paulina who works as a Digital Director and gave this post a read now informs me that apps aren’t even cool/current anymore. Help.