The List Saved My Life

 

Never in my life have I been this excited to start the New Year. 2016 will bring in the start of my dream job, countless concerts, and the first time that nearly all of my friends will be living in New York City. But most importantly, 2016 marks the start of a new, healthy me. It marks the end of 2015: the end of cancer patient me.

It was two weeks into January 2015 when I began to feel weak, and by the start of February I could barely walk up the four flights of stairs to my room. I assumed I was anemic, or maybe I was coming down with the flu — or God forbid, worst-case scenario, maybe it was mono (obviously now I wish it was mono). I spent a week going through countless tests: after chest x-rays, ultrasounds, echocardiograms, EKGs, and countless blood tests, my weakness was still a mystery and I began developing flu-like symptoms, so my doctor decided that it was time for a bone marrow biopsy and a blood transfusion.

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Looking back, I can hardly believe that while I went in to what would be my first of many bone marrow biopsies and blood transfusions, I still had no idea. I can still recall sitting in the tiny, stale room in a large, comfy transfusion chair watching my usual reruns of Law & Order: SVU, connected to my soon-to-be-nemesis, the damned IV pole, in the middle of the Hematology and Oncology Center. I remember feeling sympathetic towards the balding, emaciated cancer patients sitting all around me in the waiting room; feeling sorry that they had been succumbed to something as grueling as chemo.

 

Pre Cancer
Pre-cancer, shooting a music festival (aka my natural habitat)

 

When I finally did hear the news — those five, life-changing words, “you have Acute Myeloid Leukemia” — there were only two thoughts going through my head: how can I — regular, twenty-two year-old Missy — have cancer? And oh damn, does this mean I’ll have to cancel my plans for a week of music at SXSW?. Being young, naive, and feeling invincible, I never once thought this would be it for me. Treatment not working was never an option, I took my doctors’ words as gospel, and instead of worrying about my health, I focused on how I’d have to miss my trip to Austin for SXSW.

Right before I was to begin my treatment, the hospital’s scientists came to realize that AML was a misdiagnoses, so my case — my blood levels, my X-ray results, and pretty much everything about me — was shipped off to the official world T-Cell expert in Baltimore. It was the first instance I felt sub-human: to these scientists, these oncologists throughout the country with whom my doctors consulted, and this T-Cell expert, I was merely a “case”; not a real person. So for one week, I was a medical mystery: while there was obviously something cancerous in blood, exactly what it was was unknown. Little did I know at the time, but my soon-to-be diagnosed Gamma Delta Hepatosplenic T-Cell Lymphoma (a mouthful, right?) is not only rare and aggressive, but also deadly. Because my doctors never brought it up and I adhered to the “no Googling” rule, it took nearly six months for my mom to mention in casual conversation that more often than not, those with my diagnosis don’t end up making it.

My doctors did mention, however, that against all odds, my cancer resulted from a medication I had been taking for years to treat my Ulcerative Colitis. I was the one-in-one-hundred-thousand people taking this medication who ended up with Lymphoma. You know those commercials for medications that say at the end “and Lymphomas have occurred”? Well — that’s me. And to make things more absurd, there have been claims that an acne medication that I took at the start of high school could cause Ulcerative Colitis; a medication that I had stopped taking about a year before my Colitis diagnosis. So basically, it was a very roundabout way to get clear skin...

Therapy Dog

Me and a therapy dog on my hospital bed

Soon after receiving my new diagnosis, my new reproduction team entered and quickly began discussing the future of my fertility — or perhaps lack thereof, as chemo damages all quickly-dividing cells, which include ovarian cells. To freeze eggs, you must go through two weeks of preparation before beginning treatment — time which I apparently couldn’t afford. It was then brought to my attention that the best way to ensure possible future fertility was to laparoscopically remove one of my ovaries, to keep tucked away in some freezer until I was ready for children, at which time my ovary would surgically be placed back in my body. It was obviously an easy decision: if the surgery would increase my chance of having children, of course. I was both scared and confused, but there was too much going on for any of it to sink in: the cancer, the fertility, the fact that my life would be stagnant for an unknown, very long while. But the fact that I was making these sort of decisions at twenty-two years-old... well... it really freaked me out. And all the while I was lying in a hospital bed feeling somewhat hopeless and solely reliant upon my doctors for my survival. But here I was, making decisions for my unborn children, all while feeling like a lost child myself.

But I made a new normal for myself consisting of regular in-patient six-day hospital chemo stays, countless follow-up visits and transfusions, while constantly being surrounded by patients at least forty years my senior (as blood cancers tend to mostly affect the elderly). I would go into the hospital, get completely knocked out by the chemo, and by the time my body was close to recovering, it was back to the hospital for more life-saving poison. I had a PICC Line, and later a port, inserted into my arm and chest respectively with a long tube snaking to my heart with which my nurses would administer all intravenous medication - and once I got used to it, it became much better than getting poked with needles and IVs all day, but a major pain nonetheless. I was down to one ovary, and due to the chemo, I began a six-month bout of menopause, hot-flashes and all — completely awful, just like your mothers say. I was awoken at all ungodly hours of the night to get my “vitals taken," and altogether, I spent a little over sixty nights in the hospital. That’s about two months or around 20% of my year — and that’s not even counting the sometimes six hours-a-day of outpatient treatment I had to endure for the majority of the summer.

And while this was a major curveball in my life, I told myself that it was only temporary and made the best of it. I surrounded myself with hoards of visitors during my hospital stays and spent my downtime in the patient lounge, keeping tabs on blogs and reading my stack of old issues of FADER magazine. My music obsession managed to only strengthen, as the amount of new bands I ended up finding and falling in love with could end up filling my made-up Lymphoma Records roster. So while I could no longer go to concerts every night, I made it my mission to stay in tune with everything happening in the music world (I even made an incredible “Hospital & Chill” playlist) in order to distract myself from what was going on with my body. So once the absurdity of the experience wore off, it became somewhat routine: I knew all of the visiting therapy dogs by name, I had tried each Au Bon Pain sandwich served downstairs (their grilled cheese was by far my favorite), and had established a nice rapport with my PAs, one of whom would make me mixed CDs of all her favorite obscure bluegrass and folk tunes.

PICC Line and IV

My PICC line and an IV

Two weeks after my first round of chemo, my long strands of hair began sticking to my pillow, as I began losing large clumps of hair whenever I touched my head. I knew losing it this way would be horrifying, so my mom called up her hairdresser, and before I could change my mind, I was bald. Being bald made it obvious that I was sick and was the final step in the transformation from regular Missy into cancer patient Missy. I can still recall one day when I was asked, “What do you have?” and I answered, “cancer," to which they replied, “of course, but what kind of cancer?”. While I may have felt fine at the time, I forgot that my lack of hair made it so obvious. But I stayed away from mirrors and kept a beanie or baseball cap on my head for the few concerts I managed to squeeze in, all of which helped (shout out to my mom’s friends who knit me some great hats).

After three rounds of chemo, I was surprisingly in full remission, even though my doctor had predicted it would take four rounds to maybe be in partial remission. So in a mere two months, I was cancer-free! Even so, my treatment didn’t end there: I still had to face my biggest hurdle, the dreaded bone marrow transplant. Because my Lymphoma was so rare, there were very few statistics on relapse, so the thought was that I might as well replace my entire immune system to ensure this never happens again; anything seemed better than the thought of relapsing and re-living this major life stagnation.

No Eyebrows copy

Me without eyebrows (scary)

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It is widely known that bone marrow transplants require one of the most difficult recoveries. After five days of nearly all-day grueling chemo, it was time for one of the most fascinating medical marvels: a type of chemo related to mustard gas for which you must suck on ice pops all day to keep your mouth frozen — otherwise it could completely destroy your mouth and GI tract. So the day before my transplant I had to continuously eat ice pops, ice chips, smoothies, and ice cream from 11am until 6pm while receiving a mere half-hour of chemo. And you better believe that I haven’t been able to eat any frozen treats ever since. Thankfully, one of my closest friends brought homemade ice pops and accompanied me throughout the entire process, as we came to the realization that a year ago to that day, we were graduating college — and you better bet that eating ice pops in the hospital while watching Spongebob reruns was definitely not how we had pictured spending the one-year anniversary of becoming a college graduate.

Finding a bone marrow match tends to be extremely difficult, but lucky for me I somehow perfectly-matched to eight people in the bone marrow registry, something my doctors marveled at — as interestingly enough, they say Ashkenazi Jews are more likely to find matches because we marry one another. And out of the bunch, my doctor chose a twenty-eight year-old male, who ended up giving me some of his stem cells after a blood donation-like process. This mere five-hour donation from an anonymous hero ended up single-handedly saving my life. While you’re not allowed to contact your donor until a year after transplant, I think of him and and thankful for him every day.

My Transplant

Photo of my actual transplant happening!


While the recovery process is awful, the procedure itself is anti-climactic: a twenty-minute infusion of stem cells through my port — the same process I would go through when getting chemo or any sort of blood or platelet infusion. So instead of my bone marrow growing back on its own after being wiped out from the chemo, these new cells would give me all new bone marrow.

The first few post-transplant months remain somewhat of a horrid blur: a blur of discomfort, infections, infusions, and being told every morning that my white count (my immune system level) was still zero. Because I had no immune system, any visitors — family, doctors, nurses, and otherwise — would have to wear masks around me at all times. Imagine not being able to see anyone’s smile for over three weeks as your room was invaded every morning by herds of masked doctors, residents, and students who would talk about you as if you weren’t even there — causing the feelings of being sub-human to return. I was continuously asked by these masked doctors, nurses, and technicians how many times I’d gone to the bathroom, what exactly I’d eaten that day, and how my bowel habits were. I had to lift my shirt and expose myself to my nurses anytime they had to take blood or administer medication from my chest port — which was often. I continued feeling like some sort of alien specimen, especially as I now looked the part: I was at this point, without eyebrows, eyelashes, or any hair whatsoever, with weird tubes (my port) sticking out of my chest. And the hardest part for me was that while I was constantly feeling awful, it was purely a waiting game – while these doctors continuously told me that I was “on the right track," there was nothing the doctors could do to help me from feeling like shit, and I didn’t even have the energy or stamina to keep up with my endless music discovery. It was the worst month of my life.

hospital scrabble copy copy
My mom and sister playing Scrabble with me (not pictured) in the hospital post-transplant

But then it got better: while I was still constantly upset and uncomfortable, I was finally allowed to go home. Even so, I had to be supervised by my parents for months; if I was merely meeting a friend at a coffee shop two blocks away, I had to be escorted. I developed the worst leg atrophy from sitting in a hospital bed for so long and could barely walk for months: two blocks was about as far as I could get. I had to take enough pills to be considered a two-course meal and had to go back to the hospital for transfusions nearly every day. But even so, things were, for the first time, looking up. Slowly but surely the hot flashes ended, and some tiny little hairs began poking out of my head after six months of baldness. And, as insignificant as it seems, I was beyond relieved when my eyebrows returned, as my hair — or lack thereof — became a physical marker of my health and progress. I was even able to head to a few concerts: I still had to avoid the crowds, but VIP was doable, so thanks to a few friends in the music industry, I managed to see Father John Misty, Young Thug, CHVRCHES, Tedeschi Trucks Band, and Billy Joel before the summer’s end.

One of the strangest things about bone marrow transplants is the intense chemo side effects: while there are few side effects that everyone succumbs to, the amount of potential side effects are endless. After this extra-potent chemo you have no immune system and are unable to protect yourself against any infection imaginable for nearly a year post-transplant, while your new bone marrow is slowly grafting to your body. I got the mere “common cold” straight after my transplant, and because there’s no real cure, I ended up with congestion and a sore throat for nearly six months before my body was able to fight it off. While in the hospital I had a UTI, BK Virus, a small lung infection, a mysterious rash, and some sort of e coli situation — and when I got home I had the notorious C-Diff and ended up being re-hospitalized for being one of the twenty reported cases of Listeria in New York. With the new immune system, my vaccinations had disappeared, and I wouldn’t be able to begin receiving them for six months, as my health was the equivalent of that of a three-month old.

Me And Carly 2

My sister Carly and me.

After my bout with Listeria, things were finally getting exponentially better. First of all, I finally had my port removed! And while this meant more needles, it meant that I was beginning to look and feel less like a cancer patient. I was also, finally, weaned off of the majority of my medications, and once those were finally out of my system, my energy and walking habits resorted back to normal. And finally, although it will take a while to grow back to its former long length, my hair reached a point where I no longer looked like a cancer patient: the last tell-tale sign of my formerly poor health. So for the first time in a year, I was beginning to look and feel like my normal, pre-cancer self — while continuing to be in remission, with 100% of my bone marrow belonging to my donor.

I’m excited to say that it’s now been seven months since my transplant and ten months since I was first diagnosed – and I’m feeling back to the old me, so thankful for my positivity and resilience to beat what I know now is a nearly deadly cancer - or as I recently discovered, a “generally incurable Lymphoma” according to Wikipedia.

While I finally got through life’s biggest-possible curveball, I came out of it with a lot to be thankful for. Firstly, I met some incredible people along the way: my doctors, nurses, PA’s, fellow cancer patients and their families, cancer survivors, Mariska Hargitay. And when I was first diagnosed, all of my friends from throughout the years who I had lost touch with – middle school, high school, camp, summer programs, college, internships – all came out of the woodwork to reconnect, while my parents and sisters spent as much time as they possibly could with me, in and out of the hospital. I felt truly loved.

Missy And Carly Now

Me and Carly now.

I mean, how many people can say that an entire record label where they used to intern sent them four-dozen roses, a sweatshirt, and a card thoughtfully signed by every single person in the company, only a couple days after being diagnosed? How many people can say that one of their long-time closest friends currently living in Israel ended up surprise-visiting them while in the hospital during their first round of chemo? How many can say that they got the chance to virtually befriend their sister’s friend who was having their bone marrow transplant a mere day earlier, who kept them posted via text on what to expect through every chemo and every side-effect? How many people have had a friend visit them in the hospital, after not seeing them for years, to support them during the dreaded hair-shaving day, bringing a bottle of non-alcoholic sparkling cider to turn this into a life-saving celebration? How many people can say that their mom magically organized a trip to the Law & Order: SVU for a tour, filming, and a chance to meet the actors from their favorite TV show?

Law Order 1

Me with the cast of Law & Order

How many people can say that their dogs had become their best friends, sitting and cuddling with them on the couch for four months straight? How many people can say that going through such a tragic year with their sisters made them that much closer and made them realize that they’re their absolute best friends in the world? How many people can say that their sister in college all the way in St. Louis came to surprise me any weekend that she could (with art projects!) and their sister in high school came to sit with them in the hospital during every free period she could? How many people can say that their dad turned their hospital room into his new office, spending as much time as he could working from the hospital, albeit masked at times? And how many people can say that their mom put their entire life on hold, opting to stay over at the hospital for perhaps 50+ nights of the 60 that their daughter spent in-patient?

So while, between the ages of twenty-two and twenty-three, I went through more than anyone should ever have to go through in a lifetime, I realize how lucky I am to have made it out with barely a scratch, ready to have, as my doctors told me, “a long, healthy life."

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Melissa Scheinberg is a band manager, freelance writer, and all-around music enthusiast who’s never left her New York City zipcode (besides college). She's a contributor for the international music site Unrecorded and got her Bachelor of Science in Applied Math at University of Rochester — and will always be a math nerd at heart. Melissa goes to concerts more often than not and spends her free time watching Law & Order: SVU reruns and hanging out with her two dogs.

Tags: cancer , 22 , patient , essay , personal

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