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.