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.

2 thoughts on “On anxiety/trauma after transplant

  1. Wow wow and wow 🙏❤️🙏❤️ Sarah! What an insanely tough and arduous journey you’ve not just endured but that you’ve truly triumphed. Your resilience is remarkable and your willingness to try just about anything (running?!) to shift your thoughts from all the challenges you were amidst … even if it meant pulling yourself together just enough for actually running outside yet another comfort zone for an hour or two & / swallowing four or so hours of quieting the very visceral and understandable mental chatter that otherwise deafened & paralyzed hope. I’m so incredibly impressed to think back on what you accomplished and continue to bearing & navigating trauma bigger in so many ways than all the arduous work of what might otherwise only have seemed ‘ordinary’ victories. You’re one heck of a force & I’m so proud and in awe of all you’ve endured and continue achieving!

    1. Thank you so much for your words & for how much you helped me stay afloat & even grow during a difficult time! YOU are a force & I’m so lucky to have met you then! <3

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