Tougher Than TWOmurs

I started writing this blog post almost a whole year ago, and wrote a lot of it out of anger, some of which I’ve since let go of. Like an angry email, I figured best to save as draft and reread before actually hitting send.

I took a lot out on the keys. Through that process alone, I settled where I needed to and saw light on the other side.

Halle-freakin-lujah.

Instead of heavily editing what I started, I’m sharing more of the raw feelings I had then, now. A year later, I’m more evolved and there will be more to come.
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DEC. 2022 – As I round out the end of my 40th year on Earth, I’m exhausted from a fight that’s endured for more than half of my life. Once upon a time it was equal parts a physical/mental battle, more internal.

But during the latter half of 25 years, anger entered the scene. Like, wits end, flip a desk, light everything on fire bonkers furious.

Because despite having clear medical issues, and an even clearer medical history, I’ve had to fight harder than anyone ever should for medical care I deserve and that I’ve paid millions of dollars for over the last 25 years.

The take-home message for this blog post is, it should never be this difficult to receive quality healthcare. It should not be too high an expectation to be granted close attention and guidance from doctors and specialists who are supposed to be the experts. Who are supposed to also give a shit.

And I say this well-aware of the doctor burn-out from COVID-19, my inherent privileges as a white woman and my heightened professional expertise in the healthcare and pharmaceutical spaces, above the average citizen. This is supposed to be what “good” looks like, right?

Life is meant to be lived, not to perpetually exist in survival mode. Reflecting on what I’ve accomplished in my 40 years – compared to what I dreamed for myself as a naive and hopeful 16-year-old, newly diagnosed with Hodgkin’s Disease and ignorant to my future reality – I’m gutted.

25 years of setbacks has morphed me into my most blatantly honest self, and I’m heartbroken over how the tough overshadows the good as I look back on four decades. I hate that for myself.

But in writing this, I can also admit that when you’re in the thick of it, you have tunnel vision. I miss being happy, and I’ll do anything to find that again.

So this post is both a transparent update on the status of my health and an unfiltered call to action – to the doctors, specialists, care teams, office staff, INSURANCE PROVIDERS and anyone else in the healthcare space or otherwise who cares enough about cancer and about people – because none of us are immune to cancer. NONE OF US.

I’ve lost count of how many of my friends and extended family have been diagnosed with breast cancer without having a pre-existing condition or a family history, and at earlier and earlier ages.

But rather than digress, I want to tell you why I’m over here reeling… buckle up for a long story that’s well overdue.

Some necessary context to set the stage…

When my oncologist diagnosed me with early-stage Hodgkin’s Disease in 1998, and when my breast surgeon broke the news that I did in fact have an early-stage breast cancer in 2015, they both emphasized the same glimmer of hope: This is the best-case scenario, this is the easiest cancer to treat, you just need to do XYZ and before you know it you’ll be cured.

I call bullshit.

Bless my pediatric oncologist’s heart, who lived and worked tirelessly to save so many childrens’ lives. It’s never been lost on me that a lot of those children – many infants, toddlers and kids under 10 – never really knew life outside of the hospital. Some didn’t get to live as long as I have, to experience the good and bad of their realities. And so I volley between laughing in disgust and wanting to hug and comfort the old man when I think about the encouragement in his voice – in six months you’ll be cured... I think we both really trusted that…

But hindsight is 20/20, and so is science. I’d be lying if I didn’t admit that some days I’d love to go back in time and smack the words right out of his mouth. Now better treatments exist for Hodgkin’s Disease so people don’t experience the same kinds of long-term effects I’m having.

For 25 years – more than half of my life – I’ve been battling cancer and the long-term effects of the treatments that would “cure” me.

Just days after my 16th birthday in 1998, I started my first cancer treatment and six months later, it was done. Diagnosis and treatment left me with two huge scars on my chest. And while most people think about the hair loss, nausea and vomiting, we don’t normally focus on the longer-term risks… mine included heart disease, thyroid dysfunction/cancer, breast cancer, lung function issues and other complications to organs within the neck to chest areas. But my parents knew, and God bless these two incredible, selfless people – my mom and dad, Peg and Mur – for having to make the most difficult decision of their lives: choosing which treatment option was the lesser evil, and for being forced to watch me suffer through it up until today, completely helpless in taking away my pain and in preventing any setbacks.

And thank God for the survivorship clinic that guided me through my 20s – this was a program that at the time was virtually unknown in other areas of the country and prepared me as best they could for life ahead.

By 2000 I was taking synthroid to treat hypothyroidism due to my “life-saving” treatment. I’ll take this every day for the rest of my life, and will always struggle with weight gain and fatigue.

By 2006, age 24, I started having annual mammograms and eventually breast MRIs, much to the chagrin of insurance providers who said I was too young to need them, and whom my doctors had to threaten year over year to approve authorizations for, telling them if I went undiagnosed with a breast cancer, it would be their fault. Thank you to every doctor who fought for the value of my life against their bottom line.

By 2010, I’d developed multiple polyps on my thyroid and it had to be removed, leaving me post-surgery looking like someone had tried to chop my head off and with another visible scar I despise every time I look in the mirror.

By 2015, at age 33, despite nearly a decade of annual screening, I developed an early yet invasive breast cancer. This was also the moment it dawned on me what my survivorship partners had warned me of years prior: “As a pediatric patient, you are cared for meticulously… As an adult survivor, you are one of many in a system where people constantly fall through the cracks, and you must be on your A game and ready to fight.”

That was a kind way of saying, the real fight hasn’t even started.

For women, an OBGYN is usually the one who prescribes/orders any breast imaging. My OBGYN at the time, who’d ordered the tests, never even called me to tell me when the results came in, and a month went by before I was even notified that something was wrong, and I went ballistic. Hours later I hopped on a plane to Las Vegas for an important business trip.

On the last day of this trip, I was able to escape to small corners of conference rooms to toggle back and forth on the phone with the radiologist’s office and my OBGYN’s office… it was four hours before they even confirmed what the next step was… a breast biopsy. They’d been too busy pointing fingers at each other over who should have been the one to call me, that they didn’t even tell me what was abnormal about the MRI until I demanded answers. I never spoke with the OBGYN during those hours… she was busy seeing other patients.

To add insult to injury, the area that needed to be biopsied was difficult to reach… so the scheduler told me they would try to perform the standard in-office method with an ultrasound machine and needle. If that wasn’t possible, I would need to come back for an MRI-guided biopsy…

I told the scheduler, I don’t care what mountains you have to move, but I will NOT be coming for two separate appointments. Instead, you’re going to do whatever you have to in order to accommodate me. If not, you and everyone else who’s royally fucked this up can lawyer up and prepare for the local news to be blasting my story and your names and addresses from every outlet in the metro area.

I got my way, and you know the rest from my very first blog post and others that followed.

What I don’t think I shared was that when the OBGYN who’d misdiagnosed me finally called to check up three months later, oblivious to any of this, we had a colorful conversation, if you can even call it that.

I talked, she was silent.

I calmly and matter-of-factly explained that I’d had breast cancer this whole time and she would have known that if she’d take 5 min. to read the report which clearly stated my diagnosis. I explained every way she’d failed me, her patient, and told her something I hope she never forgets: I’m just one of several patients of yours, and I hope this is the worst mistake you ever make in your career. I hope you remember how you failed me every single day and that it drives you to do better for every patient in your care, for the rest of your practicing life.

“Luckily,” my breast cancer was ER positive, which means it grows from estrogen… “the best-case scenario” in terms of how to treat it. But invasive breast cancer meant that I have teeny tiny breast cancer cells floating through my bloodstream that needed to be starved so they don’t settle in a critical organ like my brain, liver, bones, etc., where they might hide and grow silently.

So from 2015-2020, I took tamoxifen, a drug studied for decades and shown via one of the largest retrospective clinical trials to reduce my risk of a metastatic breast cancer recurrence by at least 40%, and even more if I took it for ten years. Metastatic breast cancer means it’s spread to other parts of the body and is considered by current science to be incurable. The goal is to prevent that.

But I’m a female with a reproductive system that produces estrogen… and while many women do well on tamoxifen, my body said no fucking way.

Within two years of taking daily tamoxifen, my life was unrecognizable.

Aside from chronic fatigue and severe depression which made it nearly impossible to function let alone work full-time, I developed polyps in my uterus, a known side effect which can cause heavy monthly and break-through bleeding. Tamoxifen also carries a small (1%) risk of causing uterine cancer, and newer data suggests these risks are actually higher, so these polyps needed to be surgically removed… not the best course of action for a woman in her 30s who hadn’t had children yet, but necessary to prevent further disease and chronic and debilitating symptoms. I had my first surgery to remove uterine polyps in 2017, two years after starting tamoxifen.

In 2020 – five years to the day – I slam dunked the last of my pills in the trash, said no way to another five years and prepared to welcome back my good health and hopeful future.

But it’s 2023… 25 years after my first cancer treatment, where this all started from… two years tamoxifen-free – about a year free of the antidepressants I needed as my body reacted to being starved of estrogen… and I’m about to head back to the OR to remove more uterine polyps.

Here’s why…

For the last year or so, my monthly periods have been horrific. Wildly painful, messy and debilitating. I’m also having bad foot pain, neuropathy in my hands and feet, palpitations and can’t walk up a flight of stairs without panting. I’ve known something is wrong, but moving to California just before COVID had made it difficult to establish care with new specialists, so I visited my general doctor (GP) at UCLA to start.

This began a 3-month game of “let’s pass the buck” all across UCLA’s health system.

My GP first referred me to a cardiologist who ordered a blood test and did an EKG and echo cardiogram. The heart tests were normal, but my blood test showed I was severely anemic. I’d later find out I had a ferritin score of 7 (it should be in the hundreds). The cardiologist told me his work was done and to follow back up with my GP.

Upon learning about how bad my periods were, my GP ordered a pelvic ultrasound while I waited for an appointment with a new OBGYN she referred me to, which despite my condition, was over a month out. The GP said she couldn’t do anything about that. When I called to schedule the ultrasound, I was given a choice to wait three more months or travel to another location that had a recent cancelation – I drove two hours there and back to have it.

In the meantime, my GP prescribed me oral iron, which FYI is dumb since you can pay less for over the counter iron, but it didn’t matter because after the first dose I had a rare but well-documented flu-like reaction.

When I emailed the doctor about the reaction, she had no idea what I was talking about and told me to take a COVID or flu test. I did, even though I knew I wasn’t coming down with something. A simple Google search validated the reaction I was experiencing, and I sent the links to my GP. She said, thanks, I’m going to refer you to a hematologist.

And again, I waited another month.

As my luck would have it (shocking), days before the appointment with the hematologist I did develop COVID and rather than cancel my appointment, begged to switch it to a virtual visit. Not ideal, but necessary to establish care as a new patient, at the very least. My appointment with the new OGBYN was the same week and I was able to convince them to also switch that to a virtual one, knowing I couldn’t afford to reschedule and wait several more months. It’s also now early December, aka, the season where people like to say, let’s follow back up after the holidays.

My hematologist appointment was all of 10 minutes (and more than $1,000 before insurance) during which the doctor gave me dietary suggestions and told me new blood tests would be required, regardless of my recent test and despite me running through my current diet to increase my iron intake. Thanks for nothing.

When I logged on a day or so later for my OBGYN appointment, the doctor arrived, said hello and then her screen froze… minutes later she logged off and I waited for her to call me back. She never did.

When I finally reached a human in her office, they said, yea, we’ve been having telehealth system issues all week (?!?!), she’s moved onto her next patients and you can reschedule.

I don’t have to tell you what I said next, you can use your imagination…

In short, I was over it. And when you’re over it, and feeling physically very sick, you just cry. And I did that for a few days to my poor mom.

I decided, fuck everyone who’d passed me around at UCLA, a system which is considered highly reputable and had shown me for months they couldn’t be bothered, and I called my long-time OBGYN from NY, who’d switched to part-time and still was able to fit me in before Christmas.

I also made an appointment with a new NY-based hematologist, who saw me before Christmas too and immediately ordered two IV infusions of iron.

Within two weeks and two doctors, before Christmas and immediately following New Year’s Day, I had a plan in NY – I had two new patient visits, a new ultrasound, pre-surgical testing, two iron infusions and the surgical procedure to remove what the doctor described as a complete mess in my uterus (for context, my first procedure in 2017 removed 3 polyps… this time the doctor didn’t even bother to count).

The Good News…

Following this ordeal a year ago, the neuropathy, anemia, debilitating monthly periods, palpitations and shortness of breath have mostly improved, and this happened almost immediately. Upon returning home to LA from NY after the holidays, I found and established care with a new team of doctors. I’ve made it very clear what my 25-year experience has been like and what I want my next 25+ years to look like with their support, attention and above all, clear understanding.

The Bad News…

The New Year started off on a positive note which led to a new diagnosis that you’ll have to wait to read about until next time.