9/26/17

Sadie at FIVE

Since you turned five years old a week ago, I’ve been annoying you by asking the same question over and over.
“Hey Sadie,” I’ll start, and your eyes will begin to glaze over, knowing what’s coming.
“What’s it like to be five?” I’ll say and you’ll look exasperated and give me the same reason as always.
“I don’t know, Auntie! It just feels good.”
Oh, kid. You kill me.
From the moment I watched you take your first breath and felt your warm and reassuring heartbeat on my hand as I lay it on your chest, you’ve had me. Not even a week after your birth, I had to get on a plane to Colorado to run a previously planned half marathon relay. I know today, if I told you that, you’d look at me like I was crazy. Auntie? Running? Was the world ending? Nope, bud. But in a way, my world was ending, a bit. I would go from running to paralysis to ICU rooms and then finally to the NIH, all in the next five years. So my world was beginning to change in the scariest ways, but I had a new buddy along for the ride.
Sometimes I frustrate your mom because I’m a cranky old lady who, like your sister, is a bit of an aggressor when it comes to getting what I want. So I’ll text your mother “VIDEO”; no please, barely a thank you, just a desperate call into my dope niece void. I’ll be in the hospital missing you guys so bad, it makes everything else hurt more. But then you’ll appear on my screen, cuddling Adelaide, singing me songs, making up Auntie dances, wrapping me in a thick cotton blankie of love. You’re always there.
The last time I wrote you a letter like this you were 3 and now you’re 5, and your world is opening in ways you haven’t even begun to imagine. You can swim now, and you’re so proud of yourself, and I am too. You can ride your Big Wheel ahead of me while I push Adelaide on the bike and I feel so lucky to watch the back of your head zoom away. You’re overcoming some big fears and doing it like a big kid. You tell me to stop spoiling you. You tell me you have enough toys. You tell me we should donate some of my books and your toys to poor people. You are incredibly empathetic.
And sometimes you break my heart. Because you worry about me. You know it’s not normal, all the time I spend in what you call the NIH: the superhero hospital. You say things that cut me deep; last week you said you prayed I would be alive forever and that I wouldn’t die soon. No one has ever used those words around you; we keep you protected, but you get it. Maybe what you don’t know, at this young age, is that your love is a force like I’ve never know. Your love pushes me out of bed. Your love makes me silly with your friends because I know you love when your friends call me Auntie, too. You’ve told me that. You also told me you don’t want me to have kids so you don’t have to share me. Hey, dreams sometimes conflict. Your greatest wish is that we live in an apartment together, just a pair of best buds, having your coveted special time with Auntie. Me too, buddy.
I love how you love New York City. I love that you love dinosaurs and princesses and Moana and superheroes. I love that you see my illness has being taken care of by superheroes: recently you asked me if my doctor was a superhero. I reminded you that superheroes are pretend and you said that you wished they weren’t, so they could fix me.
Whenever I’m in pain in front of you, you tell me to try not to think about it. And in the days I’ve spent in the hospital, or the nights alone and sick at 3 am, I listen to you. I don’t think about it. I think about you and the Ooga monsters, and everything seems alright.

On the night I laid my hand on your chest, I knew I’d do anything for you, beat anything that might come in between us. You are growing up, so lovely and kind, such a helper. I wouldn’t exchange these last five years for a damn thing.
Love,
Auntie

3/28/17

NIH: Part II

Good morning. 5:30. I'm awake and here with your daily (ha) NIH update. I'm currently waiting for the blood stick to fully draw me from my half conscious state and back into the world. My room is empty and quiet, a welcome departure from the city hospitals, where privacy and sleep are nearly impossible.

I still can't sleep here, but that's not the hospital's fault.

I did some decorating yesterday, a lame excuse to buy all the dumb stuff at the gift shop I'm sure my parents would refuse me when they come. Take, for instance, this doll of Teddy Roosevelt. I mean, which other hospital could possibly sell a tribute to our 26th president? Not Mount Sinai, that's for sure.

It's only my second day here but I promised updates and though they may be as dry as the four graham crackers I just shoved in my mouth, hang in there.

On Sunday, I said goodbye to my girls and headed to Metropark, bound for DC.

I barely made it off the train in time due to an ill-advised moment of Instagram stalking. I I basically crowd surfed above an angry mob toward my suitcase, just in time to stand clear of the closing doors and enter the gorgeous Union Station.

I got into a Lyft with a deaf driver who did not appreciate my attempts to finger spell direction and finally texted me to stop trying to use ASL. I responded with my newest sign: bullshit. JK grandma!

I made it to the National Institutes of Health after a thorough security check and settled into a far off wing they'd resuciatated for patients after a water main break. I was thrilled when they called it the Ebola unit because that meant no roommates for me. And since my last roommate was fond of crapping the bed literally every 45 minutes, I gazed upon the empty bed next to me with teary eyes.

So: why the f am I here again? Didn't I spend most of February in the hospital, not losing weight despite vomiting everything? Aren't I amazing about not being bitter motheruckingsonofabitchskinnybastards

I came down to begin a drug called ruxolitinib. Thie drug has recently been used in a handful of patients with my STAT1 genetic mutation. The hope is the drug stops some of the mouth sores, the infections and the general malaise and fatigue that awaits me every day. It'd prevent aneurysms and generally save me for a bit. Sadly, it would not rid me of Type 1 Disease. That bish is here to stay. Dammit.

Unfortunately, for the last few weeks, I've had extreme jaw and mouth pain. Yesterday I saw the dental clinic. The doctors there decided I need IV antibiotics and the experimental treatment I traveled here for will have to wait until my mouth heals.

This means that my two week stay may be more of a three week stay which a huge bummer because I'm on day 2 and I've already anger colored all my coloring books in a manner in which suggests I need occupational therapy.

So the plan is to get a line in today and go from there. I'll also meet with pre-anesthesia and tomorrow they'll Michael Jackson dose me while they pull my last remaining teeth left.

In the mean time, thanks for the love! 

Love you all, in vary degrees of appropriateness.

PS: many of you have asked for my NIH address:
NIH address: Kelly Bergin National Institutes of Health 9000 Rockville Pike Hatfield Building , Unit 5NE, Room 5-2412 Bethesda, MD 20892

2/10/17

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.


Love,
Kelly


11/25/16

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! 

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!

xo
kpb


11/18/16

2016: You Suck



Uncle Sam Wants You..your medical history?

Yes. 

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.

9/9/16

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.
 
Love,
Kelly

30 pound weight gain. Thanks cancer + prednisone!

9/1/16

 


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