As a draft Supreme Court opinion leaked Monday night indicating that the conservative majority intended to reverse the landmark abortion case of Roe vs. Wade, I was preparing to visit a fertility doctor for the first time. Not because I’d had trouble conceiving, but because I had uterine fibroids removed late last year — which, had they gone undiagnosed, would’ve prevented a successful pregnancy — and I wanted to make sure everything was ok.

Like so many of my peers and those who’ve gone through this before me, I’ve had to suss out whether or not I have a biological imperative to create life or if that’s what I’ve been conditioned to feel. Where I’ve landed is that I’d like to have a kid, and I think I’d be okay at it, but if I’m unable for whatever reason, I can’t imagine going to great lengths to make it happen. Much of this process is random and up to fate, but as I reflect on an emotional week, I’m acutely aware of how very much in control I am of the circumstances under which I get pregnant, and how many others are losing more control by the day.

After a shitty night’s sleep and still brimming with rage at the idea of religious extremists thinking they have the right to force people to stay pregnant, I had to decide what one wears for a fertility doctor appointment followed by a pro-abortion protest. A day-to-night look, if you will. I settled on black leggings, an olive green t-shirt, but struggled with footwear. I wanted to be comfortable but also show my doctor I was put together enough to reproduce, so I went with my brand new white sneakers instead of the more comfortable but worn ones.

The idea of me personally carrying a child had until this day seemed mostly abstract, but after a train ride from Brooklyn to Manhattan on Tuesday, I found myself sitting across the desk from a doctor asking me how many kids I wanted, when I wanted them, and if I’d considered freezing embryos. This was all going according to my (and my partner’s) schedule, like figuring out when to take a vacation or decorating the apartment. No part of the process would be initiated until I agreed to it.

Still, even with all these choices, I couldn’t help but feel a bit like a baby-carrying vessel. There was a lot of talk about percentages of viable pregnancy as we age, and how, at 34, I should still be fertile enough, but in a couple of years, who knows. If I wanted an “insurance policy” I could have my eggs extracted, have them fertilized with my partner’s sperm, analyzed in a lab for abnormalities, and then have the best ones frozen in a warehouse somewhere until we’re ready to use them — the process of embryo freezing. It’s basically to make sure that if and when I want baby number two, which at this point will be in my (gasp!) late 30’s, it’s pretty certain that I’ll be able. This is predicated on the idea that if I’m only able to have one child, I’ll feel a loss. An emptiness. A missing piece in my future family.

As I was deciding how to mix and match my fertility journey, people all over the country were panicking about whether they’d be able to access an abortion they needed imminently, or should they need one in the future. While it’s possible to order very safe and effective at-home abortion medication in all 50 states by doing an online consultation, even that access isn’t equitable. A friend told me they know someone in Georgia seeking an abortion soon as possible, but was told there’s an eight-week backlog to receive it. That would mean keeping an unwanted pregnancy for two more months, and all the physical and mental distress that comes with it. And that would also mean the potential for missing the legal window for people in her state to seek an abortion.

While at the doctor’s office, she did a sonogram of my ovaries and found they were producing lots of eggs. I wasn’t sure what emotion I was supposed to feel — proud? excited? — but I settled on being pleased that, after many health challenges, my body was doing what it was supposed to. A phlebotomist drew my blood to test for different pregnancy hormone markers, and to run a genetic test to see if I’m a carrier for any disorders. I also met with the finance person who informed me that, when all was said and done, the embryo freezing process would cost around $20,000 and that insurance likely wouldn’t cover any of it. It was a stunning number presented so casually, belying the level of privilege with which they were accustomed to dealing. I nodded and said “sounds good!” and took the papers.

There was little time to process the volume of information and the volume of feelings brought on by that information before I reached a park a few blocks south to stand shoulder to shoulder with my fellow New Yorkers as we screamed into the void about our bodies, our choice. Attendees carried signs that said stuff like “Fuck this fucking shit” and “Abortion is health care”, and we did our best to respond to the speakers’ calls for chants. Despite being people known for our tenacity, a melancholy blanketed the crowd.

Meanwhile, people in Texas and Louisiana and Oklahoma and Mississippi and other so-called “trigger states” are facing a future in which, should the Supreme Court overturn Roe as indicated by Justice Alito’s draft opinion, abortion would be illegal. It would be considered a criminal act for someone to decide that they don’t want to grow a human inside their body, push it out through a small hole or via a major surgical procedure, and then be forced to care for it and give it up for adoption — two loaded and life-changing options.

New York state Attorney General Tish James was one of the speakers at the NYC rally where she shared, for the first time publicly, that she herself had an abortion when she was a young councilwoman. “I walked proudly into Planned Parenthood,” she told us. “And I make no apologies to anyone. To no one.” The moment was remarkable both for her bravery, and for the fact that standing in a deep blue city in a deep blue state, she knew she had our unwavering support and admiration. And she announced that New York would be setting up a fund to help people from other states travel here for abortions.

In many ways, New York falls short of the liberal utopia that conservatives make it out to be. But in this moment, I can breathe easy knowing that as long as I live here, I and the hundreds of other people who were at the protest would be able to control our reproductive futures. That ability to breathe, to choose, to plan a family, has never felt more precious. And it’s never felt more imperative to support abortion funds and the work of local abortion providers to make sure people in every corner of the country can access their bodily rights — no matter what the Supreme Court says.

As I write this, I can’t look right. To be more precise, when I look to my right, my vision is double. It’s been this way since I woke up from my surgery 10 weeks ago, and it’s a constant reminder that I’m still healing. When possible, I wear an eye patch over my left eye to strengthen the right one, and the pirate jokes have grown cold by now. All I can do is wait.

I expected to share more updates in the days following neurosurgery to remove the remaining piece of my pituitary tumor. Going into the surgery, I was feeling cautiously optimistic after a beautiful few days outside in the Bay Area of California (where my family and I had nervously traveled to during the pandemic because it was the only option.) But both the surgery and recovery ended up being so much more extensive than anticipated that it’s been hard to even process what I’ve been through, let alone put it into words. But I’m going to try.

On February 22nd in Palo Alto, 8:15AM local time, doctors administered anesthesia for what they anticipated would be an approximately four hour procedure through my nasal passage and into the center of my head to remove the medial wall between my pituitary gland and carotid artery. The purpose was to access previously unreachable excess tumor cells leftover from a prior surgery and successfully remove them. But once my neurosurgeon, Dr. F, got inside my head, he soon realized what he and his team were dealing with: some of the most stubborn and fibrous tumor cells they’d ever seen.

Nine hours — that’s how long it took Dr. F to remove the many fibers tethering my tumor cells to the medial wall one by one. Some were so stubborn that he needed to essentially burn them as an alternative method of removal. There was also a small leak from my brain that was sealed up using a flap from my septum. Wild stuff.

The best possible way to describe waking up from nine hours of anesthesia is imagine being born as a fully grown adult. At first I couldn’t see at all and could only cry. I loudly sobbed for reasons I didn’t understand, and when my eyes eventually opened, it felt like I was the only person in the world. As I continued to regain consciousness, I yearned for reassurance that I was OK — and for some water. And after getting a glimpse of the clock, I wanted to understand how it got to be 6:30PM.

I got none of that. I could talk about the disinterested nurse in the post-anesthesia area who ignored my pleas for assistance, or being rushed to a CT scan to make sure my brain was functioning ok, but it’s all a blur of experiencing the worst pain I’d ever felt in my life, and knowing I’d need to soldier through the next few days by myself because Covid restrictions allowed for zero hospital visitors. Though there was a staff of people, I knew that I only had myself.

Hours later when I was finally in my hospital room, Dr. F came by to tell me a bit about what my body had been through. (It’s an odd sensation, being told about something you experienced but of which you have no recollection.) He told me it was “one of the hardest” tumors he’s had to deal with in his career. I told him about my distorted vision, the numbness in the left side of my face, the roof of my mouth and the tips of my fingers. He assured me it would all resolve, though he couldn’t say exactly when. Even he, the visionary surgeon who pioneered this life-changing technique for Acromegaly patients like me, looked a bit stunned by what he’d just been through. Nothing had gone to plan for either of us.

There’s no way Dr. F could have anticipated how challenging it would be. An MRI shows you the size and location of a tumor, but it’s more of a flat map than a 3D model. So while the tumor cells appeared manageable beforehand, their texture was unknowable without going right to the source.

I somehow managed to be released from the hospital two days later since my vitals were strong and the side effects I was experiencing would take weeks or months to resolve. Despite the unexpected twists, Dr. F and the other doctors involved thought the surgery went really well, which was impossible to believe given how shitty I felt.

Leaving the hospital is always a great feeling. There’s this hit of adrenaline, like you’re making a great escape [in a wheelchair with all your belongings piled on top of you like a snail.] I had this foolish notion that despite not being able to breathe through my nose, see, smell or taste properly, or walk or shower without supervision that my recovery would be similarly swift to my last tumor removal surgery. I kept forgetting about the nine hours.

So I retreated to our Airbnb and proceeded to spend many, many hours on the couch, while wearing a gauze mustache to catch the many fluids leaking from my sinuses, unable to watch tv or read because of my vision. For the first week, I wasn’t able to walk past the end of the driveway.

My parents and Ben became my nurses, tending to my every possible need. It reached a point where my dad would sense that I had woken up in the middle of the night and would come downstairs to get me water or grapes to get the horrible taste I developed from breathing exclusively through my mouth. All three of them cared for me without a single reservation or moment of complaint, and yet I still felt immense guilt for putting all of their lives on hold so that I could get a few tumor cells out of my head.

And after four weeks of feeling like something wasn’t right, I ended up going back under anesthesia for a follow-up procedure — but that’s another story for another time.

Just like last time, the three month post-surgical MRI and blood work will tell the true story of whether or not the entire tumor was removed. If anything shows up on the MRI, obviously it wasn’t. If my IGF-1 hormone levels remain elevated, it likely wasn’t. All I can do at the moment is keep up with my nasal rinses, be as active as I can tolerate, and try not to seize on any possible sign that the surgery wasn’t a success.

And keep wearing my eye patch.

I’m having another neurosurgery this month to remove the remainder of my pituitary tumor, which, if successful, could mean I’d be rid of my Acromegaly forever.

I’ve known about it for a little while now but haven’t told too many people because telling people makes it real, and when it’s real, there’s hope. Hope is a beautiful thing and a dangerous thing. It can make you want to believe in an outcome that, in this case due to the limitations of medicine and science, may not be possible. But now I have no choice but to be hopeful, because there is a chance that sometime soon this particular health crisis could be behind me.

If you read my last update from November marking the two year anniversary of my last neurosurgery, you might be a little confused. I said that I was still feeling crummy, administering on myself bi-weekly injections that weren’t helping much, and doctors had a hard time providing a clear roadmap because they couldn’t even reach a consensus on my hormone levels or whether my tumor was growing. It was a mess, and I was a mess. But in that same update I mentioned I’d scheduled a virtual visit with an endocrinologist in California who my dad had found through his tireless research to find a solution for me, and that visit turned out to be something of a miracle.

At this point, I’ve gotten pretty good at sizing up doctors from a first impression. And my first impression in my visit with the endocrinologist in California, Dr. K, was very good. He was warm, listened intently to my story and didn’t rush me as my parents and boyfriend sat and listened off camera. And when it came time for him to give his assessment of my case, he suggested something that hadn’t been suggested in any serious way in the last two years: another surgery.

To understand why doctors didn’t think I was eligible for another surgery, I’ll need to get into the Acromegaly weeds for a moment. Bear with me. When my original surgeon attempted to remove my entire pituitary tumor in November 2018, a small piece of it was left behind. That’s because it invaded the medial wall of the cavernous sinus, which separates the pituitary gland from the cavernous sinus. Dealing with this area is risky because your carotid artery is in there and controls blood flow to your brain. Very important and not something to be messed with — unless you have the proper technique, which, as of early December 2020, I didn’t know existed.

(You can watch the great video my doctors did about the technique here, if you’re so inclined.)

From Dr. K’s perspective, it looked like the location of my residual tumor was not too deep into the cavernous sinus and that I could be a candidate for surgery using a new technique pioneered by his colleague Dr. F, a neuroendocrine surgeon, along with an ENT surgeon (since they enter through the nasal cavity.) The technique (in the simplest terms possible) involves safely removing the median wall in order to remove the residual tumor. And no more tumor means no more Acromegaly, no more injections, no need for radiation. I wanted to believe, but I was reserving the celebration for when Dr. F confirmed. I’d been sold a bill of goods before.

But sure enough, the following week in a virtual appointment, Dr. F echoed Dr. K after reviewing my MRI images: I was a strong candidate for the surgery. Whereas the last surgery I had results in 50–60% success for patients, this new technique has yielded a 94% success. Dr. F was clearly an innovative and caring doctor, I got a great feeling from him, and his online reviews were unmatched. One patient wrote, “He made me feel comfortable and unafraid with what he had to do. I feel God was guiding him throughout the surgery.” Hard to beat that.

So I was officially allowed to be excited. And to set a date.

Yes, this means I’ll be traveling to California. If there were any other option, I would not be flying during a global pandemic. Even now, I still have concerns. I guess I felt like, if people can go to Mexico just because they want to, I can go get a life-changing surgery while taking as many precautions as humanly possible. I’ll be heading out there with my parents and boyfriend and staying for three weeks to account for pre-surgical appointments, my surgery and hospital stay, recovery and follow-up appointments. Surgery is Monday, February 22.

I won’t know right away if full removal was achieved, though hopefully the doctor will have a good idea. It takes about three months for the hormones to re-balance and for the MRI scans to show an accurate read. But last time I knew after about six weeks that something was wrong. Hopefully this time after six weeks, I’ll know something is right.

It’s been two years since my neurosurgery and I’m angry.

I’m angry because I thought I would be healthy by now. I’m angry because I can’t even get a clear reading of my hormone levels. I’m angry because my doctors put their egos before my care. I’m angry because I’m still suffering. I’m angry, tired and frustrated.

When my pituitary tumor showed up on an MRI nearly three years ago, I was scared but also took my cues from my doctors at the time who assured me that a simple surgery to remove the tumor would eradicate the disease, and the experience of blood tests and injections and medications and procedures would be a blip in a long life. But as I learned in early 2019 a few months after my surgery, some of the tumor cells were not able to be removed and the harmful effects of excess IGF-1 hormone would continue.

One year out from my surgery, I was starting to understand that many challenges lay ahead. And in January of this year as I got a clearer picture of what I was dealing with, I wrote about the many twists and turns on my health journey. Somehow it’s only gotten twistier and turnier since then.

Long story short: There’s still no consensus over whether my tumor has grown since my surgery. According to an IGF-1 measurement from one major lab, my levels are normal, and according to another major lab, they’re off the charts. I’ve increased my weekly injections to twice weekly, which has so far made no impact on my levels or symptoms. I’m working with doctors at two major hospitals, which is creating more confusion than help. I know in my body that the disease is still very much present. I’ve adjusted to the idea that I will never be truly done with Acromegaly, and that the best I can likely hope for is managing my symptoms.

The term “chronically ill” has taken on new meaning. I used to think it only applied to people with a visible disability, or those with easily-recognized diseases like diabetes or cancer. But after dealing with my own rare illness for years now, it’s made me think about how many people I’ve interacted with through work, school, life who’ve been chronically ill, suffered silently, and I never knew.

There are still days when I’m out on a casual walk and my fingers swell, my body temperature is totally off, and I feel like I’m completely out of batteries. I feel leaden and brittle all at once. But from the outside, you probably wouldn’t know. Maybe I look a little sluggish, a little out of breath. The screaming inside my head, the self-consciousness, the abject frustration at not being healthy when I was told this would be over by now can’t be seen with the naked eye. And while I try to be open about it with my loved ones, the experience of suffering through a chronic illness has created a deep loneliness because no one truly understands how I feel.

And a global pandemic on top of it all certainly hasn’t helped.

I wish I had a sunnier perspective, and I wish I had better news to report. But I feel it’s important to continue being transparent about how much this all really sucks because I think it’s important for people to hear. Since I’ve been writing about my Acromegaly experience, I’ve had multiple strangers reach out to me to say they came across my posts in researching the disease and that it made them feel less alone. I was also able to give them advice about navigating the wild world of endocrinology and help connect them to resources. It’s made me realize what a dearth of information that I — just a patient — have filled in so many blanks left by health care providers.

So, what now? I’m going to consult virtually with yet another doctor who my dad discovered thanks to even more of his diligent research. This doctor, who I’ll see next month, is based in California. He’s an expert in my specific disease, not just pituitary disorders in general, and I’m hoping he’ll be able to look at my case and size up what needs to come next.

I’ve said it before, and I’ll say it again: When it comes to your own health, complacency is not an option. If you feel you’re receiving substandard guidance, if you feel your doctor isn’t treating you with appropriate respect and care, it is your right to seek alternatives. It is your right to question them. I’ve found the way doctors respond to being questioned reveals their true character. Good doctors understand that you are allowed to be selfish when it’s your own quality of life at stake.

I remain grateful to my parents, my boyfriend, and friends who’ve remained fiercely supportive as I continue to struggle. And I’d be remiss if I didn’t mention one of my greatest sources of support throughout this deeply challenging time: a group chat with three friends I met via Twitter who’ve helped me get through some of my darkest days by talking about health, illness and life in the most honest and nonjudgmental way. I never knew how much I needed them until I found them.

I hope to be back with better news soon. Until then, wishing everyone good health and better days ahead for us all.

M

(Note: Read the precursor to this post here.)

I suppose it was good news when a highly-respected and experienced neurosurgeon told me this week that my tumor didn’t appear to be growing back: but the problem was that just a month prior, another highly-respected and experienced neurosurgeon indicated the opposite. I felt less joy, more frustration.

Prior to this most recent assessment, I’d spend the last few weeks adjusting to the idea that I may need another brain surgery in order to remove the residual — and supposedly growing — tumor cells by my pituitary gland. That would mean another round of anesthesia, another few days in the hospital, another lengthy recovery, and another waiting period to see if they had, in fact, gotten all of it.

Part of me was at peace with it if another surgery meant stopping the tumor and Acromegaly, my hormonal disease which stimulates overproduction of a hormone called IGF-1 from the liver and causes all sorts of physical side effects. Another part still felt quite traumatized by the entire surgical process, including having a catheter inserted into me without prior warning. I knew I could get through it, but it didn’t mean I necessarily wanted to.

In March of last year, I started seeing an endocrinologist at a different New York City hospital after frustrations with the level of care at the hospital where I had my surgery. When I found out the month prior that some tumor cells escaped the surgery, my original doctor presented a few options, none of which sounded great: 1) A medication called Cabergoline that had a moderate success rate, but was known to cause mood disorders, and not ideal for someone like me with clinical anxiety and depression; 2) Daily injections of Pegvisomant, a hormone blocker that would reduce my symptoms and bring down my IGF-1 levels if used for…the rest of my life; 3) A radiation treatment to kill the tumor cells for good, but which takes an average of two years — yes, multiple years! — to take effect. The doctor wasn’t really nudging me one way or the other, and I didn’t understand what should come next. I decided it was time to move on.

My newer endocrinologist, who I’ll call Dr. K, came highly recommended by someone I knew tangentially who had a similar condition to me. My dad and I went to meet with her, and when I told her my previous doctor had mentioned radiation as an option, she asked my dad to leave the room. Dr. K doesn’t mince words, and she asked point blank, “Do you want to have children?” I said yes, I think so. “Then you don’t want to do radiation,” she said.

Dr. K led me to believe that the one-time targeted radiation treatment could render me unable to pregnant. This, I would later learn, wasn’t quite accurate. But once that idea was in my head, it was hard to shake. Suddenly I was forced to seriously contemplate how much I wanted to someday be a parent, whether I’d need to freeze my eggs, and more broadly, how this disease was permeating every part of my life.

Instead of skipping right to radiation, Dr. K recommended lanreotide, a once-monthly injection that’s supposed to shrink the tumor and lower IGF-1 levels. This wasn’t my first experience with lanreotide: I’d been administered it for a few months before my surgery to see if it would shrink the tumor in time for removal, but the results were negligible. However, Dr. K thought that I could have some luck this time around since the mass was so much smaller. And with that, I agreed to once again have these massive injections into my upper-butt area in the off chance they would help. She also recommended I try the daily injections of Pegvisomant for some short-term relief.

It’s hard to understate how menacing it is to inject yourself with a needle. Each day — after a 15-minute preparation process that involved transferring water from a syringe drop by drop into a tiny bottle filled with powder, slowly swirling the bottle until the powder dissolved, transferring the liquid back into the syringe and making sure there were no air bubbles — I’d point the syringe at either my stomach or thigh and wait a few seconds until I worked up the nerve to do it. My body screamed “No!” while my brain reminded it “We need this.” And now I was talking to myself. Good. Great.

After six weeks and little change in my symptoms, I decided I just couldn’t do it anymore. The mental and physical toll were just too much. And so I kept up with the lanreotide and hoped for the best. In the meantime, my boyfriend’s aunt who works at a hospital in Boston recommended I reach out to the endocrinologists there to see if they had any different opinions about my prognosis or suggestions for alternative treatments. On a sweltering September day, Ben and I took a balmy Bolt Bus up to Boston to meet with yet another endocrinologist who I’ll call Dr. L.

Dr. L isn’t just an endocrinologist, but a specific pituitary specialist. Our 90-minute meeting involved a lot of going over my medical history and records, but I did learn a few new things. As I alluded to earlier, she explained that radiation would not, in fact, render me infertile. It could, however, permanently destroy certain pituitary function over time, and the hormones that initiate the pregnancy process are produced by your pituitary. It’s impossible to say if or when that would happen, but I’d have my hormones closely monitored, and if I was having trouble getting pregnant for that reason, I could do hormone replacement. She also recommended freezing my eggs, an incredibly expensive and invasive but increasingly popular reproductive safeguard for people mostly in their 30’s.

Shortly after this visit, I had my first MRI since earlier in the year. The images were supposed to show whether the tumor had grown or not, and indicate whether the lanreotide injections had worked or not. And this is where things started to get really dicey. According to the highly-respected, experienced surgeon who works with Dr. K, the tumor had appeared to be growing, albeit slowly. Dr. K had even presented my images at a conference in late November, and that was the consensus. She knew I’d been consulting with Dr. L in Boston, and the two had even compared notes after some prodding by me (newsflash: doctors are very competitive!) Since Dr. K’s surgeon is only consulting these days, she recommended heading back up to Boston to see Dr. L again and get an opinion from the highly-respected, experienced surgeon at her hospital. I’ll call him Dr. B.

Which brings us back to this week.

My mom and I sat across the desk from Dr. B as he pulled up images of the inside of my brain and inspected them. He quickly shared his assessment: “I don’t see any growth.” Come again?

Dr. B couldn’t explain the other surgeon’s rationale for indicating growth, but he said from his perspective, there was no reason to believe the tumor had experienced any meaningful change post-surgery. Therefore, he didn’t think another surgery would successfully retrieve the small cluster of cells remaining in a dark, narrow corner of my head. Instead, he recommended I get another MRI in three months, and based on those results, likely do the radiation treatment.

In my appointment with Dr. L right after, she advised me to believe Dr. B’s assessment and eschew the other surgeon’s. So much of being a patient is being told to put blind faith in doctors, and my eyes have been opened too wide to do that anymore. I wanted to believe the tumor wasn’t actually growing and that I was on a somewhat stable path, but I couldn’t. All I could feel was anger at yet another turn in this thorny path.

There is one more option being considered before radiation — a medication called pasireotide, often used in patients with a different endocrine disorder called Cushing’s Disease. I came across it while doing some independent research on Acromegaly treatments, and found patients with similar profiles to mine had success with it. Much like lanreotide, it’s a monthly injection and it’s unclear how long I’d have to be on it. But when I originally brought it up to both endocrinologists, they conveyed hesitation because studies have shown pasireotide to cause Diabetes. Why would I want to swap one disease for another? So I dropped it.

But at this week’s appointment, pasireotide came up again, and suddenly Dr. L didn’t seem all that concerned about the potential for diabetes. She said it could cause spiked blood sugar, but not actual diabetes where I’d need to take insulin. She even said something about being able to reverse the diabetic side effects? Yet again, I felt simultaneously misled, confused, but a tiny bit hopeful.

For the past six weeks, I’ve been on a weekly dose of pegvisomant (that injection I originally tried daily) and am waiting to see if it’s brought down my IGF-1 levels. If not, we may increase to twice weekly. Still beats every day.

I’m more or less in a holding pattern while I await my MRI in April to see if the tumor is or is not aggressively growing. In the meantime I’m continuing with some lifestyle changes I’ve made in the last few months: exercising regularly, working with a functional medicine doctor on a diet and supplement plan that’s supposed to support my condition, and acupuncture. And now I’m trying to incorporate another change: Being comfortable with the unknown.

Until next time,

M

One year ago today, I had a tumor removed from my head. Doctors went through my nose, broke a small bone behind it, and scooped out a mass on my pituitary gland, a pea-sized gland that sits right below your brain and controls major hormone function. One of those hormones is Growth Hormone, which, for me, was stimulating overproduction of IGF-1, another hormone, from the liver. This disorder is called Acromegaly: It’s already wreaked havoc on my body, and if I hadn’t discovered it by accident early last year, it could’ve been much worse.

I thought one year ago today marked the beginning of the end of this health journey. My doctors were going to take the tumor out, and after about three months, I’d feel great. No more swelling of my hands and ankles. No more inexplicable weight gain. No more exhaustion. No more excessive perspiration. Six months before my 32nd birthday, I’d be golden.

But it didn’t work out that way.

————

This process has been anything but linear, and so it can be challenging to explain it in linear fashion. That’s why I’m putting it all down in print to help make sense of what my body has been through, and perhaps help other people who find themselves feeling helpless, without answers, or like a tiny cog in our dizzying health care system.

It’s impossible to say when the tumor first formed, but I can say with near-certainty that I never would have discovered its existence had it not been for a literal warning noise.

In June 2015, I was about to head to Austin for a work trip when I heard a persistent pounding in my right ear — like a pulse or a heartbeat. I went to urgent care and a doctor took out a healthy pile of wax, but the pounding beat on. In the months that followed, the sound would come and go, until eventually it was constant. You don’t realize what a luxury it is to lie down at night in silence until you’re deprived of that luxury.

I went to an ENT. I went to my general physician. I tried acupuncture. No one could understand the problem I was describing, and I started to feel like I was crazy. My (now former) general physician said, and I quote, “You’re just going to have to live with it.” But that wasn’t an option.

As my mental health deteriorated because of the drumbeat in my ear, my dad continued to sleuth for solutions. And finally on one fateful day in 2017, a magical combination of Google search terms turned up the name of a doctor who would change everything: Dr. Athos Patsalides, an interventional neuroradiologist at Weill Cornell Medical Center, right here in New York City.

I called Dr. Patsalides’s office, described my symptoms to a nurse, and she said “that sounds like Pulsatile Tinnitus.” So I wasn’t crazy. It had a name.

Pulsatile tinnitus is “a symptom that affects nearly five million Americans. The sensation of hearing a rhythmic noise, such as a heartbeat, swooshing or whooshing, from no external source, is, at best, a little unsettling; for many, the near constant sound exceeds annoyance and becomes completely debilitating. Nearly 60% of patients who experience this issue also suffer from some form of depression or anxiety. These rates are significantly higher than those associated with other chronic conditions due in large part to the difficulty of diagnosing the root cause of symptoms.”

But even with a probable diagnosis, I still couldn’t move forward. After getting laid off in late 2016, I was still working as a contractor in mid-2017, and my insurance would barely cover any of the necessary testing and doctor’s visits. So I waited some more, until finally my contract job brought me on full time. It was really the only reason I was so desperate to get on staff: to get the health insurance I needed to stop this noise once and for all.

A late January 2018 MRI of my head and visit with Dr. Patsalides revealed my pulsatile tinnitus was caused by a partial blockage of a vein in the right side of my head, which made it more difficult for blood to flow through. The sound I heard was blood forcing its way through the vein. But that’s not all it revealed.

The MRI imaging also had my pituitary in the field of vision, and the radiologist reviewing the results could see it didn’t look right. So a day after my official Pulsatile Tinnitus diagnosis, I got a call from the doctor asking me to come back in for another MRI specifically of my pituitary to get a closer look at this concerning mass and to see an endocrinologist. A few weeks later, the endocrinologist confirmed: I had a benign tumor on my pituitary gland, and I would have never otherwise known about it.

Knowing you have a tumor inside you is a strange sensation. You can’t actually feel it growing, but you can convince yourself you do. It feels like an unwelcome visitor, one that you desperately wish you could throw out for causing destruction to the premises. But reaching inside my head and pulling it out wasn’t an option, so I had to be patient.

Throughout the course of 2018, my body was pushed to its limits. I endured multiple painful shots in my butt to bring down my IGF-1 levels and shrink the tumor, which turned out to be largely unsuccessful. Doctors made a small incision near my groin and snaked a mesh metal stent up through my entire body to unblock the portion of the vein in my head. I spent a night in the hospital and a couple of weeks recovering. The sound was miraculously gone, and Dr. Patsalides became a hero in my book. I needed to go on blood thinners for six months after the procedure, which meant the tumor removal surgery would have to wait. I was exhausted and bloated and irritable and depressed and scared. At the same time, I was working my mind and body to the bone, helping elect Democrats to the House of Representatives. Election Day was, as history will recall, a resounding success, and a week later, I went under the knife. The three days and nights in the hospital were some of the worst of my life. Hospitals are oddly counterproductive to healing. I went home to my parents’ house for three weeks of recovery, endured debilitating migraines, restless sleep, and experienced a new level of exhaustion. I also couldn’t stop peeing and was incessantly thirsty, a common side-effect of angering your pituitary. Still, I lived with the hope that in three months time, the dust would settle, and this would soon be past tense.

February of this year rolled around, and blood work revealed my IGF-1 level remained elevated. I also still felt like crap. The surgeon hadn’t been able to get every last cell because they were too close to my cavernous sinus. You don’t want to mess with your cavernous sinus.

I was angry at my doctors for making me believe the surgery would be one and done. I was angry modern medicine provided no easy solution. I was angry that these tiny little cells in a dark corner of my brain were keeping me from moving on.

One day soon I’ll share more about what I did next, alternative treatments, and how I’m doing now, but I just wanted to mark this anniversary by recognizing all that I’ve been through. I want to say I’m proud of myself for making it to this point. And I want to tell anyone struggling with their health to never stop fighting, never stop googling, and never stop asking questions until you get sufficient answers. Your body is yours and yours alone, and you should honor it not just by taking care of it, but by seeking diagnoses and treatments that feel right to you.

Thank you to the people who’ve steadfastly supported me through it all. You’re a small but mighty crew, and reflecting on it one year later, I would’ve never made it through without you. It can be easy, as I’ve seen, to run away from a person in need. But you ran towards me. I’ll never forget it.

Until next time.

M

Dear Friend:

Remember the way you felt on November 9, 2016? There’s something concrete you can do with that rage, that fear, that helplessness, and that’s why I’m writing you today.

It’s been a hellish two years for too many, and even more so for people from marginalized communities. Millions of our friends, family members, and community members elected a despicable man, and since then it’s been a rapid descent into chaos. From dismantling our health care piece by piece, to accelerating the decay of our natural environment, to mocking, well, everyone who isn’t him, and perhaps most heinously, locking children in cages for days, it’s not controversial to call this is one of the darkest points in our history.

Then there are the lies: big and small; consequential and trivial; personal and political. His daily attempts at undermining what we know to be true has made it impossible to engage with people with other political views because we end up arguing while rooted in two different universes — one real, one perceived. Every political conversation is injected with deep frustration, stemming from our inability to make them see that we want to uplift the many, and the Republicans strive to uplift the few. It can be enough to make you throw your hands up, retreat to the status quo, and pretend everything will work itself out because it always does, right?

No, friend. It won’t.

After spending the last 2+ years hanging on every bit of political news and letting it absorb into my DNA, I feel confident in saying it is not going to be ok. That is, it’s not going to be ok if you leave the work to other people.

This isn’t just a fight for American values — it’s a fight for American People: the teachers and the social workers and the nurses and the artists and the farmers and the restaurant servers and the writers and the domestic workers and the auto mechanics and the civil servants. Each and every one of us deserves peace of mind and the tools to succeed. And that begins with elections.

In elementary school, you were taught that we live in a Democracy. “Every voice counts,” your teacher might’ve said. But she didn’t mean that the government is going to pay attention to your voice whenever you raise it. Your vote is your voice. Knocking on doors to tell your community about the candidates who will fight for racial, gender, income, employment and LGBTQ+ equality is your voice. Sending letters to undecided voters is your voice. Your voice is so much louder than you know. And it’s time to join the chorus.

We have mere days until November 6, 2018 — a milestone that’s been looming since the moment we began this dark chapter — and you can decide how to use this precious time. I fully recognize it’s not easy. You may work long and unpredictable hours, have personal commitments that leave you with little free time, or you’re simply scared to get involved in the legwork of elections, quite possibly for the first time, because if YOU’RE forced to get involved in the political process, then there must be something really wrong.

No, that means there’s something right.

For far too long, we (me included) assumed that elected officials and career activists would do the heavy lifting while we tried to get by as best we could. That was a mistake. And one we can fix. Right now.

That’s why I’m asking — imploring, really — you to do something.

Make a plan to knock some doors or make calls on behalf of a candidate.

Send texts for a candidate.

Write a few letters.

Help everyone in your inner circle register to vote or check their voter registration status.

Help them create a plan for getting to the polls on Election Day.

These small radical acts will change the course of history. And no, this is not hyperbolic.

But above all, I want you to care. I want the outcome in November to keep you up at night. I want you to feel the gravity of what’s at stake. I want the horror that coursed through your veins on January 20, 2017 to be present.

It’s time to do something. Do it now.

~Marisa

https://www.crushthemidterms.org/

To: David Brooks

From: A woman

Re: Late-Term Abortions

Dear David Brooks,

I read your “Abortion Memo” published in The New York Times, and while it’s clear from your writing that you’re proud of your political posturing, and see your effort to reach across the aisle as noble, I’m here to tell you not only should you be ashamed of what you wrote, but that your words are deadly.

You write: “How much is our position on late-term abortions hurting us? How many progressive priorities are we giving up just so we can have our way on this one?”

You ask “do we want late-term abortion so much that we are willing to tolerate President Trump?”

I’m here to tell you that these aren’t questions you get to ask. Because my life is not your bargaining chip. Women’s lives are not yours to offer. You need a new gimmick.

You’ve also presented a false choice. In 2018 America, we are not choosing between late-term abortion—or as abortion rights activists prefer, later abortion—and Donald Trump. We are choosing between democracy and authoritarianism. We are choosing between truth and lies. We are choosing between justice and persecution for where we worship, who we love, the color of our skin, and yes, our political beliefs. Real supporters of women’s bodily autonomy understand that giving an inch on late-term abortions isn’t going to lead to some progressive promised land.

As Lindy West put in on your very same op-ed page in August, “abortion is not valid fodder for…compromise, nor is racism, nor is L.G.B.T.Q. equality, nor is any issue that puts people’s fundamental humanity up for debate. Abortion is not a fringe issue. Abortion is liberty.”

During one of the 2016 presidential debates, Donald Trump made the claim that women could have a late-term abortion where they “rip the baby out of the womb in the ninth month, on the final day.” I hope you know that’s an impossibility. I’ll give you the benefit of the doubt that you know the process of removing a baby in the ninth month is called “birth.” While you didn’t use explicitly violent language in your open letter, you have to know the words you used lead to violence against women in the denial of proper care.

After Trump’s 2016 “rip” comment, I spoke to four women who, for various reasons, had late-term abortions. Their words may help you understand the impact of your letter.

Susan, a Californian now in her 50’s, was diagnosed with preeclampsia in her 26th week. Her blood pressure was off the charts, her kidneys had shut down, induced labor could’ve killed both mother and child, and if they waited, she risked major stroke. So she made the “horrible, heartbreaking” decision to end the pregnancy.

“If this was not law, if this was not legal, I would be dead or in jail,” she told me in 2016. “The fact that I was able to get through it, recover physically, and have more children,” proved to her that late-term abortions save lives — and even help create the possibility of more life in the future.

I’d like to think that by framing late-term abortion as a progressive “compromise” you weren’t saying women’s lives are just not worth as much. After all, the issue has become so deeply politicized that it’s strayed far from being about women’s health and safety, and morphed into an exercise of male power and privilege. But you must understand the gravity of what you’re saying on the pages of one of the most read papers in the country.

By fear-mongering about the demise of Roe v. Wade, by attempting to guilt our collective conscience by citing statistics about fetal cognition, you’re not only doing a grave disservice to the greater conversation. You’re revealing an attitude that says women don’t know what’s best for our bodies. And that we are expendable.

I’m going to leave you with some words from Aislinn, who learned in her 21st week of pregnancy that her baby would most certainly die in birth. If pushed through the birth canal, a rare condition would cause every bone in his body to break. So she made the call.

I asked her in 2016 what she’d say to Donald Trump about his abortion comments. I imagine she’d tell you the same.

“We are, above anything else, mothers making a compassionate choice for our babies. We are women (and supportive partners) who love so deeply that we wish to spare our babies even a moment of suffering. We are informed and educated and autonomous.”

She added: “We will not be threatened by small men who know nothing of compassion.”

Sincerely,

A Very Real Woman

My first political memory is playing on my neighbor’s driveway when I was four-years-old, and watching my mom argue with my friend’s dad about why Bill Clinton was the only right choice for president. And how much George H.W. Bush sucked.

I don’t remember what exactly was said, but I remember her body language. Hands flailing about, like a true impassioned New Yorker, and the tone of her voice — imploring him to understand the right choice. The moral choice. It’s a tone I now know well, and one which I use myself every day. Just like mom in 1992, I often feel like I’m flailing about, but falling on deaf ears as I try to explain why caring about the lives of all Americans can’t be optional.

My first political act was dressing up as then-First Lady Hillary Rodham Clinton for a third grade class project. The assignment was to choose an important American and tell his or her story as if you were that person. I chose Hillary because I understood from a young age that she wasn’t just the president’s wife: she was a force in her own right. The adult-sized suit I borrowed from my mom obviously didn’t fit right, but the role of Hillary did. Her influence was important to me then, and it’d be important again.

My first overt engagement in election politics came when I was 17, the year of the 2004 presidential election. Though I wasn’t old enough to vote, my parents and I watched the Daily Show every single night, and had begun a countdown to the end of the Bush years. While my friends crushed on Freddie Prinze Jr, I only had eyes for Jon Stewart. I ordered Kerry/Edwards pins to pass out to older classmates and teachers, covered my schoolbag with them, and phone banked by myself after school to encourage people to vote for a man I thought would be good at the job. I learned an important lesson that cycle: boring trumps smart. When Kerry lost, I was immobile on my bed. I never wanted to feel that way again, but I knew I would. Because it was at that point I realized I cared. And soon I’d be off to college in Washington, DC, where I wouldn’t be able to help but care.

My first time traveling for politics came senior year as a reporter for the George Washington University student newspaper, covering a College Democrats trip to Charlotte, NC, a few weeks before the ’08 elections. I talked to soon-to-be Senator Kay Hagan. Senator Amy Klobuchar popped onto our bus to say hi. The people of EMILY’s List made sure the volunteers I was shadowing had their marching orders. As a reporter, I was meant to separate myself from their glee, but it was impossible to quell the waves in my stomach. On election night, I attended the College Democrats results party. When they projected Obama as the winner, the ballroom erupted, and after hugs were exchanged, we sprinted the few block to the White House to bask in the glow of future President Obama’s home. The better future we’d dreamed about had finally come.

My first time professionally {see: for money) covering a campaign was, of course, the 2016 presidential election. We were going to elect a woman president. We were going to elect a woman president. We were going to elect a woman president. I kept saying it until I felt it was actually true. In June of that year, I attended a conference where I listened to President Obama, Vice President Biden, First Lady Michelle Obama and Oprah (!), among many others, lift up the room, and help us peer into the next presidency. And the closer it got to the election, the more compelled I felt to write about it — about reproductive rights in peril, about rampant misogyny in the opposing party. My editor even let me go to Washington, DC, for election day to post up outside the White House, and relive my glory days during another exciting American First. But election day came in like a lion and out like a dead lamb. The whole world changed. My whole world changed.

Earlier that day, I showed up to my polling place in New York, hardly able to contain squeals in the booth as I filled in the scantron bubbles. Hillary Clinton and Tim Kaine: check. Then I hopped on a train to DC, spent a little while roaming around near the capitol, snapping photos, trying to distract from my boundless nervous energy. I’m not going to go through the blow-by-blow of election night, but it involved a lot of alcohol, the only cigarette I’ve smoked in the last decade, denial, paralysis, and eventually, tears so constant and heavy I couldn’t breathe. I don’t even remember the train ride back home.

Now I’m sitting in a hotel in Crystal City, Virginia as I write this, a few short miles from the hotel where I stayed in DC, that November night one year ago, and everything looks different. One week after that, I was laid off from my job. Three weeks later, I met my boyfriend. Two months later, I was back in DC marching shoulder to shoulder with women from across the country (including my mom), vowing to heal our country’s wounds in spite of the new administration. A few days after that, I started a newsletter about upcoming protests around the country, which about 4,000 people seemed to find interesting. In May, I moved from Manhattan to Brooklyn. And in June, I was approached about a job at Hope, a new media and activism platform. That’s why I find myself back in DC now, as part of a training and funding program that Hope is a part of. I still devote my days to reading and absorbing the news, but now I’m actively working to help Americans regain some sense of control by turning news rage into meaningful action. And as much as I love it, it can be hard. If you haven’t noticed, there aren’t a ton of reasons to be hopeful.

It’s easy to say that this past year has changed me. That I went from someone excited about the future of the country to someone so profoundly disappointed by nearly everyone and everything around her that she can’t imagine a way out of this mess. But truth is, that person last year was blind. She showed up to her polling place, I’m With Her shirt purposely visible to all, thinking that if Hillary could just eek out ahead, that our year-long national nightmare would be over. But as the bomb that is this year continues to go off, I’ve become acutely aware that our country’s entire history is the nightmare. The 2016 election was just another stage of it. While we had our first black president and universal healthcare was instituted, we also saw the serial killing of unarmed black men by police officers, with little to no consequences for the offending officers. As a reporter covering the aftermath of Eric Garner’s death, seeing heartbroken people take to the streets of New York City to protest lack of justice for people of color, I was finally actively looking behind the curtain. And this year, the curtain’s been torn down. The hoods removed.

I wish it didn’t take the election of a white supremacist for me to understand that hate — for people of color, for women, for LGBTQ folks, for people with disabilities, for anyone “other” — doesn’t exist solely in one-stoplight towns and former states of the Confederacy. It exists in my ultra-liberal city, in my hometown, in members of my own family, in former colleagues, in friends. It exists overtly and covertly. It slaps you across the face and hides in plain sight. It’s a large part of what compelled 46% of people who voted last year to make a conscious decision to digress.

Since I can’t think of a more delicate metaphor, the zit has been popped and the pus is oozing out. Now we’re wading through the pus. And just to continue with this disgusting metaphor, our nation’s blemishes aren’t skin-deep: they’re deep-rooted, systemic, pathological, and reinforced. It’d be naive to imagine we’ll ever eradicate them completely, but we aren’t powerless. Senator Chris Murphy of Connecticut put it best, in the wake of yet another mass gun tragedy this week.

“The sinking feeling — the helplessness that washes over you as news of another mass shooting pings on your phone or scrolls across the TV screen. That feeling is not inevitable. I know this because no other country endures this pace of mass carnage like America. It is uniquely and tragically American.”

So as I move forward, marking more political firsts while treading familiar paths, my work is to think of progress as the only inevitability. The process will be difficult, and disgusting, and depressing, and heartbreaking, but will culminate in victories and better days for a greater share of the population.

If I become a parent, I hope my child, and all our children, will live in a country better than the one we have now. And I hope they’ll look at us, our hands flailing expressively, and when they’re old enough, grab the baton to continue the work that will never be done.

I’ve always said that my biggest fear is getting shot.

Well, besides birds. I’m very afraid of birds.

But while birds perch on nearby power lines, dance across my deck, cackle from the trees, and scavenge for food on every street corner, the fear of getting shot is abstract. You either understand what it’s like, or you don’t. Like, you’ve either been shot or you haven’t.

Of course I fear the pain of a bullet entering my body, ripping any flesh, veins, arteries, bone, in its path. I imagine that at first I’ll feel nothing, and that once it’s inside, the bullet will explode, causing me pain far beyond my worst menstrual cramp, migraine or paper cut. I don’t claim to be a doctor, but this is what I imagine.

I imagine it every time someone reaches into their pocket on a busy street or on a mostly deserted street. I imagine it in line at airport security and in line at my corner bodega. I imagine it on the subway and on Amtrak, at Chipotle and Starbucks, at the movie theater and Broadway theater.

In America, you are always but a fabric’s width away from someone else’s piece of metal that could leave you dead. One swift dive into a pocket, flick of a finger, could end it all. Your friends and neighbors and fellow consumers have enormous power over you — your fate is ultimately in their hands. And this is what I really fear: people believing they have a right to be able to kill someone, should they deem them killable.

You might think you’ll be safer if you have a gun, too. If they shoot you, you’ll just shoot them back. Right?

Well what if they shoot you in the head? Or the eye? Or the heart? What then? Maybe, despite being shot, you’re somehow still be able to reach for your gun, sparing others in the first guy’s path. In the end, though, you still got shot. Your head or your eye or your heart or may never be the same. The people who love you may never be the same.

But there’s a very real chance you won’t have time to fire back. It will all happen much faster than you could’ve imagined, all your hero fantasies evaporated in the ringing of a shot. The only objective is to survive. Maybe you’ll have time to take cover from the deluge of bullets, maybe the shooter will run out of bullets. Maybe with just one shot, you’re gone.

You might think you “deserve” a gun, because that’s what you’ve been told. You have a RIGHT to protect yourself. It’s in the Constitution! But what about my rights? The right to feel safe walking four blocks from my house without getting shot, unlike a man just yesterday afternoon. The right to know that it’s unlikely my family or friends won’t be victims of gun violence. The right not to have to see mothers, fathers, daughters, sons, sisters, brothers, teachers, co-workers, lovers, friends, mourn someone important who was shot to death because someone else thought it was their RIGHT.

When I saw the news that Congressman Steve Scalise was shot, I felt sick. I imagined his family learning the news, and the sheer terror of not knowing if he’d be ok. Despite his A+ rating from the National Rifle Association and his reputation as a champion of the Second Amendment, I grieved for him. For that feeling of an explosion inside ones body, as I have imagined it. For his personal terror. I do not wish that for anyone.

But the fact remains that anyone can get shot anywhere by anyone at anytime in America, whether you’re at a morning softball practice in Virginia, a UPS store in San Francisco, or a first grader at school in Connecticut. If someone else decides it’s time for your life to end, they have the power to make it so.

This is no way to live. This is no way to die.