What Happens Now: the NIH Special Edition Blog

Last week at the National Institutes of Health, my team of doctors met with my parents and me for a wrap-up meeting. It had been an incredible week, full of great attention to each of my symptoms. We sat down after 5 days and listened to the team of doctors and their plan to treat the genetic mutation I and 100 other people in the world were born with. Yes, only 100-200 other humans on this planet have this mutation! I always knew I was special. *Here's more about Primary Immunedeficiency disease: http://primaryimmune.org/about-primary-immunodeficiencies/

The short summary of this fatal condition is scary. Some with this mutation have severe disease and as a result, have died as children and young adults. Those with mild disease have lived into their 50s. And those with moderate disease fluctuate in their prognosis. I have a moderate/medium fry sort of disease, perfectly mediocre, just like my grades in high school.

There is no cure but there is a bone marrow transplant option. It's as close to a cure as possible, which is cool, BUUUUUT there is a significant risk of terrible side effects, and my doctor (an expert in BMT and Stat1 GOF) has seen patients die of infection after getting new bone marrow. A bone marrow transplant requires the immune system of the sick patient to be completely replaced by their donor's, but it doesn't fully erase the mutation. However, the transplant may end up being necessary for me. 

A BMT would require at least 60 days inpatient. And then I would temporarily live down here for awhile in patient housing as I recover. Because of the nature of my disease, a bone marrow transplant is riskier than it is in most cancers. There's the risk of graft versus host disease and death if the transplant does not take and a new immune system fails to thrive. Scary stuff, I know! It's possible I won't need one if these new treatments work but it is absolutely something that is on the table and on a 6 month to a year timeline. The risk in waiting is that I could continue to pick up infections that have irreparable damage. Patients with this mutation also have an increased risk of cerebral hemorrhage and they found a tiny aneurysm that is too small to worry about for now, but it will be followed up every 3-6 months with MRA scans.

The good news is that we don't have to jump to a BMT right away. But first, we're gonna try a drug given to multiple myeloma patients. That's where we will begin. I'll be back inpatient for a week this month to see if this experimental treatment might delay the transplant.

In other news, my organs are all in decent shape which is great. Nothing is an emergency right now, and everything is going to be super closely monitored. My doctor told me a bucket list is a good idea but also told me not to freak out and think i'm about to die. Which I totally only do once a day hour minute WHATEVER MA

On my last morning the psychology team came in to see how I am dealing with the news. It's probably the denial but I feel OK about it. Obviously the mortality rate scares me but if it works, my life would dramatically improve. Nothing can reverse some of the damage that has been done, and type 1 diabetes is here to stay. But it would likely rid me of the constant infections and inflammation that wear me down and keep me in the hospital. I'm very grateful to have the team that I have, here at NIH and at Mount Sinai. One of my NY doctors, Edith, even came down for the day yesterday to see what they had in mind and to see how I was doing. I feel extremely confident that we aren't rushing into this. The timeline gives me generous amount of time to travel and see a few things in case I'm isolated from the world for 3 months.

To sign up to be a donor, please visit BeTheMatch.com. The initial test is just a swab. If you do match, the procedure is unpleasant but not terrible. Plus you'd be saving a life. MYYYYY LIFE! (JK.)

And to help support my personal bucket list and the First Descents organization, which has brought so much joy and meaning to my life as things have gotten harder, please visit my fundraising link. I plan to walk a 5K and I'm excited to raise money for my favorite organization! https://support.firstdescents.org/fundraise?fcid=441725

As always, thank you so much for your love and support. I have so much to live for and I will fight, fight, fight as long as I can.



Tray Adjacent

Guys! Someone actually paid me to write something. 

Check it out here!

insert photo of me looking pleased with myself for finally overcoming my fear of rejection (JK not over it)!

oh, here's one. i definitely look pleased here, and not at all tipsy off of auntie's merlot

we'll pretend it's a celebratory glass of wine.

i'm so glad you don't need teeth to drink wine.

short update since i wrote aforementioned essay:

i was in hospital for a week in September for a staph infection. my new favorite doctor who curses like a sailor (heart emoji) had inadvertently caused a staph infection when he performed a mundane skin cancer removal. since my body sees any cut or even splinter as an excuse to throw a freakin' deadly ass germ party, my skin turned red and hot and a little green. i was in the hospital for a VERY LONG week, during which two of my roommates died.

yes. two.

on my last day before i was released, i took a little nap. i was a little bit better which means i was actually able to sleep. i'd taken my teeth out to sleep--dentures are wicked uncomfortable--and when I woke up, they were gone. the cafeteria guy, a man i thought was my FRIEND, had tossed them when you came to get my tray.

what. the fuck.

admittedly, i put them in a cup next to a tray. but they weren't on the breakfast tray. they were merely tray adjacent! 


so now i am toothless again while i wait for the new denture to be made. i'm calling it Mouth Knives: The Sequel. i've been without teeth for two months. the remake of the denture has been a crappy, long-delayed sequel full of complications, budget issues and general frustration. it's the Spiderman 2 of dentures. (what the hell is that sentence?)

i will finally have teeth again come Monday. my lisp will be banished and i'll totally feel comfortable in my own skin. HAHA jk i never feel comfortable in my own skin since my body is actively trying to destroy me 24/7. 

but you guys know what i mean.
happy holidays, folks.

i'm thankful for all of you and also irish soda bread and Nerds for my blood sugar lows.

i'm also thankful for president obama. 

merry whatever!



2016: You Suck

Uncle Sam Wants You..your medical history?


This week, the government's hospital, the National Institutes of Health, agreed to accept me as a patient.

Here's a sample of the cover letter that my doctors at Mount Sinai Hospital put together (I've edited out any information that would embarrass me, obviously):
Whew boy! And that was only the start.

It took six months to prepare my case to be presented to be accepted and it took six hours to get accepted. I'm not sure when I go, or what this means.

I am hopeful that a bone marrow transplant is taken off the table and another medicine or therapy is given a chance. I know a cure isn't possible and that it may be very true that I am outliving the latest model every single day. I don't know how scary this can get; I only know how scary it has gotten. 

I'm willing to try anything to alleviate the diabetes or constant infection. I am scared the diabetes is so out of control that I'll lose limbs or my eyes. It all feels real now.

Here's to hoping.


In other news, Kristie's cancer surgery went great. Oh yeah. Kristie has thyroid cancer! Like I did in 2008! What shitty luck is that.

Today she will find out what stage her cancer is and whether she requires more treatment. Please keep her in your prayers!

Times be tough but luckily we have her beautiful girls to distract us from the stress of cancer in our family again.

We are all lucky to have my parents to propel us forward while having our back. 


I've been spending a lot of time in NY lately, walking around by myself, reminiscing about the lush years of my twenties. New York is still my favorite, forever home.

I have a part time rental on the Upper West Side. I love being back in New York. It's like I'm living again. I hate cliches but my New York love is one big Billy Joel medley of Yankee hats and Queensboro Bridge jokes and NEW YORK NEW YORK I LOVE YA NEW YORK.

no one knows how much i dance in joy around my apartment. 

it's so good.

i cry too but...man, i dance a lot. even on the saddest days. even on the Trump days. even on the worst days of the worst days, i put on Hamilton and i fucking dance.

that's what's getting me through.

also, this


i love all of you.


A Post With a Narrative; Or, Kelly's Second Newsletter; Or An EntirelyNew Blog Post If You Don't Subscribe; Okay.

Let's just skate right into the mess.
This spring, after lots of back and forth between hospitals in NYC, NJ, and California, I decided to consolidate most of my care to one hospital. Here is the very long story of how and why this came about, the new genetic disorder I know I have and notching my second carcinoma in only eight years. Read more for more fun! 
Since I left New York in 2012 for the great unknown (the rest of America), the most important members of my medical team were scattered in Los Angeles and New Jersey and that one airport clinic in Ohio.

Now in 2016, my doctor at the helm of Operation: Keep Bergin alive is an immunologist I met when I was sixteen and leaving my doctors at Children's Hospital of Philly after 15 years. I was also in the midst of My Very First Lupus Flare and was seeing every doctor in New York to figure out what the hell was going on. I first met Dr. Cunningham-Rundles (known as Dr. C) in 2001, when I weighed considerably less, had a crush on Zac Hanson and Amanda Bynes, wore a puka shell necklaces and had approximately 1/3 of the diseases I know have today. Dr. C is "doctor famous" in her field and in NY for being a freakin’ genius. See? http://nymag.com/nymetro/health/bestdoctors/features/593/ And she’s famous to me because I’ve seen Robert F. Kennedy Jr. in her office, and Fantasia from American Idol (not together but SHIT, that would have been RICH).
When I saw her again in late March, I had been away from Mount Sinai for five years. We had a great reunion and I updated her on the health sagas that'd unfolded while I was off in LA, or Istanbul, or laying in the sun's evil rays in Asbury Park. Most importantly and seriously, I told Dr. C about the autoimmune diabetes (type 1 is my particular kind) that had was diagnosed in 2012. My type one is brittle and dangerous, swiping years from my life expectancy with its' damage and projected damage to my organs.
While things have improved since I got a Dexcom (wait, you don't know that a Dexcom is a continuous glucose monitor that checks your blood sugar every five minutes? Did you know Nick Jonas wears one all the time, even on stage and during sex? Did you know he said this corny quote about the Dexy? Does he know that he's my hero? See image!)

Okay, Diabetic Jonas Coma over. My blood glucose levels have improved and continue to improve since I got Dexter, but it's still harder for me than most to maintain levels. Some of that is just the nature of the disease. Some of it is my Zootopia fruit snacks addiction. But also because I don’t want it to be my fault, my diseases actually do work against each other, bullying one another so that my infections cause blood glucose spikes, which cause fatigue and sickness and dehydration and, in the long term, heart, skin, eye and kidney damage.
Yikes. Yeah. Dudes, I know. It's a mess. And it's a rare kind of mess, one not easily scrubbed by a course of antibiotics or new bone marrow. I’m all about a transplant fixing some of this shit (it may work, one day…)
Dr. C decided to run a gamut of genetic tests to see if she could finally pinpoint an underlying disorder that explained the strange pattern of disease (which is called, no i am not kidding with this many letters, chronic mucocutaneous candidiasis). She'd always believed that there was an underlying mutation causing the long word I said before, the lupus, type one diabetes, thyroid cancer and the T-Cell disorder that makes it impossible for my body to fight fungus. She always lamented that the test to find the mutation hadn't been invented yet. And before I left for California, she joked that I'd have to stay alive it out so I could wait her research out. Which, cool. Was hoping to.
Upon our reunion, she informed me that there was another genetic test she wanted to run on me and it totally only cost 3 grand cash. But the day had arrived. They drew my precious, rare blood, and sent it off to Grey’s Anatomy and three weeks of significant studies at Seattle Children's Hospital. After confirming the test, the geneticist sent Dr. Cunningham an email, which she forwarded onto me. It turned out she was absolutely right--not only did I have the mutation, but the test to pinpoint the mutation that I have wasn't even invented when I was born. What are these scientists doing sitting on their asses all day? Jesus!
Dr. C drew me a little DNA cell on the tissue paper on the exam table. I did not understand a single word of it but Google tells me the mutation basically causes my body's DNA cells to remain in an "on" position when it comes to fighting illness, cancer, or disease, thereby destroying the good antibodies alongside the bad ones. For all you geneticists, doctors, nerds, and scientists out there, here's a journal study explaining the mutation that I have. http://jem.rupress.org/content/208/8/1635.full
This was a pretty significant finding and I was called back to see Dr. Cunningham-Rundles immediately. (I usually see her twice a year.) She instructed me to continue to follow-up on the symptoms that have turned my diseases from manageable to truly miserable. First, I had those bothersome abscesses in my mouth fixed by casually removing the rest of my real teeth. I also dove (and continue to dive) into appointments meant to address symptoms that have been bothering me for months. The usual good stuff like unexpected and certainly significant weight gain (can I have all your old pants), cold sweats, fevers, vomiting and nausea, and every other sort of hellish experience you can imagine. Dr. C even instructed my rheumatologist in his handling of my lupus. Her reputation, freakish brilliance and vested interest in my case made me feel immediately better. I started a physical therapy regimen for my slipped discs and narrow neural pathways in my back; I went on the right mix of blood pressure medicine (100 mg of labetalol and 20 mg of avoiding my mom when she watches Fox News); I scheduled a minor surgery for gastroparesis for the end of the month; I made an appointment to get my eyes and bladder checked because they were bothering me too; I saw a nephrologist for my kidneys; I had a full and surprisingly normal neuropsychiatric evaluation (I know, what a fool); I started a pain management routine, my doctor gave me synthetic pot...it’s been a busy summer.
] was in a great hospital system in Jersey but it’s impossible to get doctors to communicate with each other and since my Jersey hospital has spottier wifi, I went with Mount Sinai. At my last follow-up with Dr. C, she insisted that only the best and the brightest fellows in her department work on my case. The Supernerds and That One Canadian, we (I) named them. And we’d have the best of the Upper East Side do the rest. The brain trust, she called it. It would start and stay at Mount Sinai but expand to doctors at the National Institutes of Health, where cases like mine, or its' kin, are seen.
And so for the last few weeks, I have been in and out of the city, seeing doctors in town, staying with my brother and cousins, having an absolutely hellish and brilliant time. I'll give you a metaphor: one night after a couple of brutal appointments and sweaty, energy-sucking walks around dumb beautiful New York City, my high school best friend and current life best friend Genevieve came over to my cousin Audrey's appointment and made me laugh so hard that my muscles spasmed and I actually cried from the pain of laughing too hard. At which point I was cry/laughing “what the fuck, ha ow, my life is like a bad poem, sob, laugh, get me a pen and a Moleskin!”
The appointments have been hard and scary but the family and friends and Love Interest have made it an incredible summer, significant and chockful of new information for me to understand, think about and maybe even write about.
I'm doing that now.
So this is where the newsletter ends, had I finished it on Sunday night like I planned to. But on Sunday I missed a couple of calls from my dermatologist, who was casually calling to chat about my biopsies. First off: it is never a good sign when your doctor personally calls you himself to deliver test results. And on a Sunday? A Sunday of A HOLIDAY WEEKEND? You better believe I was updating my funeral playlist in between our game of phone tag.
On Monday, we finally got each other on the phone and he let me know that the rash on my skin he'd biopsied--the one he and Dr. C believed to be some sort of virus--was actually fucking cancer. I was midway through screaming the f-word when he casually mentioned it wasn't melanoma. OK COOL, Dr. L. Next time maybe mention that first before I’ve already looked up the local embalmer in the goddamn phone book.
I don't have melanoma but I do have squamous cell carcinoma, all over my arms and legs. It came on very quickly--I went from one biopsied benign spot back in September to an explosion of pink polka dots all over my arms and legs. I matched far too well with my pink gingham shirt to pull it off. I hate the spots and am so embarrassed of them, although a lot less so now that I know they're cancer and not some weird flat wart virus that I wasn't going to tell anyone about because I do care about not dying the f alone, you freaks.
The skin cancer changes the game a bit, and I need more biopsies if I’m going to start a treatment for the genetic disorder (a low dose chemo). I also learned that my hormone levels came back a bit whacky, which made me feel sane because I have been having very strange fits of hot flashes and tremors and profound sweating (which sounds like a brag but is definitely not). My doctor here dismissed it but my doctors tested for the appropriate hormones, which came back at inappropriate levels. So while I am sort of crazy and in awe of myself for passing a four hour neuropsych eval, I feel saner knowing that the crappy way I feel is not all in my head. Some of it definitely is, though.
So, it's Friday night at 7:39, and I slept for 58 hours straight last weekend, and I'm ready to do it again. Thank you for your patience in this update. I know many of you have called me or my parents and wanted to know exactly what is or was going on, but this is really the only way I want to disseminate the information.
Straight from the horse's mouth.
Thanks for loving and caring, gang.

30 pound weight gain. Thanks cancer + prednisone!



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One Year

One year ago today, my parents flew across the country to find me in the ICU, fighting a systemic fungal infection and DKA. It was terrifying for both them and me. 

In the year since, I have lost and regained my strength a handful of times. I have felt, oftentimes simultaneously, great joy and great sadness. I have suffered and I have lived with pain. It has been the hardest year, the scariest year, the saddest and best year. 

Some days I work so hard so I never have to fight like that again; some days I lie in bed and let myself sink into the weight of it all. But more and more, I look forward and I do not fear. I give into suffering less even as my pain increases and my anxiety beats a wild hummingbird song inside me. 

I must go on; I want nothing more than blue skies and kisses from my girls, and trips with my friends, text messages with my cousins, love from everyone and all of you. I write now. I exist. I keep on. 

And while today marks a significant date in my medical history, I look toward the life I have built in spite of it, and I thank everyone who has helped me stand back up. Into the light we go.


Tooth & Beauty

Three weeks ago I had my bottom teeth removed. Many have asked me why and so I will try to explain in a way that doesn’t make me look like a foul-mouthed freak (I prefer to make that impression on my own with colorful language and horrifying jokes).
One of the main components to treating lupus is the use of corticosteroids. Steroids are terrible for you, long-term. I actually wrote a bit about it for The Daily Beast a few years ago, but basically: they wreck your body while also saving it at the same time. Sound confusing? It shouldn’t because that’s what modern medicine is: a bunch of give and take, push and pull, metaphors and compromises and hopes that the outcome justifies the means. I don’t know if it has for me, yet. I am alive, though, so that’s good.
Unfortunately, I am also mostly toothless. One thing that steroids do is weaken your bones. I'm seriously Bird Bones from Playing House (watch that show, you clowns.) And teeth are bone! So they began to break away and because I have all those sexy diseases, I started to develop infections that wouldn’t heal and I ended up swollen and hospitalized. It became painfully aware that the safe thing to do would be to remove all my teeth.
Last January, before I went to California for 4 months, I had my top teeth removed. It was hellish. I bled like crazy and developed sores and ulcers over the open sockets. It was bloody, ugly, colorful. Two weeks after seven top teeth were removed, I was on the plane to California, clutching an ice pack and a bottle of Vicodin.
I have stretched and reshaped my smile so many times over the past two years; I tried to make myself smaller, my loud mouth quieter. A difficult task. And to be in a lot of social events where I’d need, you know, teeth, was wrenching. I couldn’t speak freely or comfortably. I had so much to say and yet I was alienated, left out, hiding to go play with the kids who wouldn't notice how lame I'd become without teeth. 
It was always on my mind; my scarred, deviated smile. And eating out, or eating at all, was a bust. (I have survived on smoothies and oatmeal alone.)
Over the summer, as I lost pretty much my entire health and woke up with completely degenerated muscles and spent time in a rehab hospital and had to learn to eat and walk and use the bathroom on my own again, my bottom teeth started to chip away. They cut the inside of my mouth. They were jagged and unfriendly to any visitors. (SORRY ABOUT THAT.) I was obsessive in my notice of the defect, but I was later told by the girl I dated for months that she hadn’t even noticed. I had gotten so damn good at hiding but I wasn’t any better and neither were the teeth. They had to come out.
But first I had to travel a little bit and write and be hospitalized for more scary infections and basically scare the shit out of everyone. In early May, I was finally medically cleared for the oral surgery. And so I was sedated with the IV Valium and nitrous and the rest of my teeth were cleanly removed by someone I later realized I had grown up a block away from in Lincroft.
Now it’s been 3 weeks and Dr. Gelband told me that while I’m healing two to 3 times slower than the average patient, I am good! I don’t even have to go back to Dr. G and tell him about our childhood connection and mutual Facebook friends and then apologize for creeping him out. (I KNEW I recognized him so I had to Google that shit.) On Friday, I’ll receive my lower dentures and the whole affair will be mercifully closed.
I have been hesitant to talk openly about this. One, it feels incredibly personal and painful, and that’s because it is. Mentally and physically, this is some of the most terrible pain I have been through. The process--from working on the teeth at NYU three years ago, to deciding to remove some, and then others, and then all-- felt infinite. And at a time in my life where I was growing into who I was and learning how I wanted to present myself to the world, I had to hide my mouth behind my hands and nod.
And frankly, it is embarrassing, no matter how I spin it in my mind. It makes me feel like I am going to be single and toothless forever and that no one will ever love me because I am toothless. These thoughts are ridiculous. If I end up alone, it will surely be to the stupid jokes I make or for poisoning my spouse’s family with salmonella in a rare and dangerous attempt to be domestic. In the grand scheme of things, teeth, or lack therof, are pretty low on what I look for in a person, in a mate. I want humor and ambition and creativity and smarts, most of all. I can deal with fake teeth and other baggage once I’ve checked for the more important stuff.
The thing is we all age. We all succumb to the horrors of our bodily decay. I have known this horror since I was one year old. And in recent years it has gotten so much worse, and so much more terrifying. And sometimes I don’t want to do it, and sometimes I can’t talk about it, and that only makes me feel worse.
But I am not ashamed of myself, or my body. I am strong. I have fought off things people don’t usually survive and while my smile may be gummier (actually, it’ll look better than ever), I am buoyed by the wonderful things in my life. Sometimes I’m even inspired by myself, because in the midst of the bloody gauze and the deep shame, I found humor every day. I found strength and love and I grasped onto it and I did not let go.
My teeth are goners. But my smile will never go away.
Thank you for all your love and support--the books, the care packages, the notes and cards and text messages. I hear a lot about how terrible and tough my life is and sometimes I believe it and then I remember that people love me and I love them and I have the cutest fucking nieces in the world and I know I will be okay.