I want to start out by being really clear here: If you are white and have friends of color, stand up for them, advocate for them, hold them up. If I was treated this poorly, imagine if I had been a woman of color! While women often aren't heard and receive marginal care, women of color even moreso. They are ignored, told they're overreacting, told whatever they're going through is genetic, brushed aside, and still treated as if they don't matter. Women of color, and specifically Black women, are the largest cohort with undiagnosed, untreated heart disease, cancer, strokes, diabetes, stress, and obesity - and those numbers continue to grow. They still die in childbirth by extraordinary numbers...in 2021... I have personally witnessed their plight among my friends, and we will be publishing a post and podcast on the subject in the coming weeks.
Now, about my struggle
I was diagnosed with Stage 3 Invasive Ductal Carcinoma (breast cancer) on February 14, 2019 and started fighting it on March 29 – the day before my 43rd birthday. I mostly fought it alone, though I did have a few friends that would bring me treats and puzzle books and spend time at chemo with me. I eventually had a friend accompany me to my other appointments because I had chemo brain and felt like I was being gaslit. I was NOT empowered in my healthcare, and I thought I was powerless to change it.
Turns out, I was dealing with the trauma of having cancer, fighting alone, and previous medical and personal abuses and traumas, and having to afford to buy groceries and pay for my car while sleeping on my friend’s floor. It was dark, heavy, mind-fogging, and I just wanted to slit my throat. I am not being facetious or hyperbolic; even now I can feel the emotional pain that was caused by this fight, and the urge to end it all. I just had to decide that I wanted what was on the other side of whatever bullshit I was going through – and that decision literally had to be made minute to minute.
It wasn’t easy, it was murky, and nobody was really listening when I told them I needed help – compounded by the fact that I didn’t have the language to ask properly, because I was so traumatised that my brain felt broken.
I decided that I never want anyone else to go through what I’ve been through and feel alone, so I’m here to tell you a story about how this all started, how it really felt, and what I did to make it all go better for me. I’m going to start the story in 2017, so grab a cuppa and settle in.
November 2017 to July 2018
I moved 2400 miles from home – to Sunny South Florida – in July; quit smoking in August (after 26 years); survived Hurricane Irma; and then had a heart attack – technically tachycardia – I also had atrial flutter. Mine raced up to 273 beats per minute, and it took them several days to bring it all the way back down.
All of that is scary on its own, but I am a person who lives with a congenital heart defect, and even though the technology is saving lives like crazy, I was now in my 40s and starting to have problems. Or rather, one quite large issue with the scar tissue on my heart causing enormous problems in my electrical conductivity.
Several cardioversions later, in February and March 2018, they attempted to perform an ablation on my heart and replace my pacemaker. When they did the cut-downs on my ephemeral arteries, they found they were occluded and so they needed to find another way.
Two weeks later, after my arteries had healed, they tried again, this time going through my carotid arteries in my neck – which meant they had to thread the ablation end through quite a bit of my torso. As they were going through my superior vena cava, they perforated it, and stopped the surgery so I could heal, and they could try again.
They finally had a successful ablation threading, and were able to perform an 8+ hour ablation, and then replace my pacemaker so that it never happened again.
July 2018 – September 2018
I re-met a friend from high school, fell madly in love, and moved home to be with him. I checked and rechecked for flags, red or otherwise. We spent a full week on the road together, moving me home. Three days after I had spent every penny I had on a move home, he decided he wasn’t attracted to me any more and he didn’t want me around.
I didn’t have anywhere to go, and ended up having to sleep on his living room floor for 2+ months, while he whined about not wanting me there, and drank the shit out of his kratom tea to be high and a jerk all the time – interrupting every effort I made to make cash and get out.
On my first night back to work on a very important gig, he verbally attacked me and made me feel very unsafe. I had to call my ex to move me out in the middle of the day while he was gone at work. We moved everything into storage, and I crashed in a friend’s guest room for a few months.
September 2018 to December 2018
I was crashing in a friend’s guest room, barely making my rent, and they decided that my time there was over. I moved into a hotel.
December 2018 to January 2019
I lived in a hotel, but had another friend who was willing to let me crash at his place rent free for a few weeks, so I could move back to Arizona – a place I am still trying to return to. I was going great, until…
I was diagnosed with Stage 3 Invasive Ductal Carcinoma, and they would need to take my breast.
I began chemotherapy the day before my 43rd birthday, and that was the day that all of the fucking around began, and my conscious memory of the trauma, the gaslighting, and my wanting to commit suicide all started (though to be fair, the suicidal ideation didn’t come until after radiation was over).
And to be perfectly clear: I didn’t want to die. I wanted the pain, the struggle, the alone…I wanted it all to stop. I had been in a struggle for 43 years, and I was tired of the shit. All of it. I wanted a better life. I decided that this wasn’t how my story was gonna end, but I also didn’t know how else to end the story.
Trauma. Trauma. Fucking Trauma. Goddamn Motherfucking Trauma. Empowered.
April 2019 – August 2019
I fought cancer so goddamn hard. I did 5 rounds of chemo, because I was really afraid that round 6 was going to kill me. My reactions were out of this world, and I got the pleasure of experiencing all of the side effects that almost never happen.
- I lost my hair, but only on the top where the Dignicap didn’t freeze my head It was like a reverse mohawk. I ended up shaving my hair off.
- My sense of taste stayed, but sweet was heightened so much that I couldn’t take more than 3 bites of anything at the time, and could even taste sweet chemicals in ordinary drinking water. It was cloying, and I had permanent nausea from that. I’m not exaggerating when I say that even things that are notoriously salty or savory tasted like someone had dumped syrup in my mouth.
- I gained 15 pounds from steroids, and another 15+ from water – and none of it was cardiac related. I couldn’t walk. It took me over an hour to climb 30 steps at Red Rocks Amphitheater on a staircase that I could previously run up.
- And on and on and on…
And that’s just what my body went through. I asked repeatedly for mental help from the cardiac department, the oncology department, my caseworker. Nobody took me seriously, and just figured I was being funny and having gallows humor about my cancer – as I often did. I begged for help. Begged. They looked for and made me fill out paperwork for grants that I didn’t qualify for. I wanted a job that I could do while in treatment, not to spend all my time filling out paperwork for grants I couldn’t get.
I also couldn’t get my Colorado cardiac team and plastic surgery team to play nicely with my oncology team – to the extent that my oncologist called my cardiologist in Florida to discuss the least-cardiotoxic path they could think of to get me through alive.
Remember, I was doing this alone. I had no significant other to lean on, my best friend of 16 years had decided that my having cancer was the last straw of our relationship, and he just couldn’t pretend to care about me any longer. I had nobody. My family repeatedly offered to help and then backed out last minute – not new to me, because it’s a signature move of theirs with regard to me, so I stopped asking. I felt so alone. I couldn’t even get someone to come over and take out my trash.
I did have friends showing up to chemo, but nobody to drive me back to hydration infusions or follow-ups.
There’s so much more, trauma-wise, but I feel like you get the picture.
By the end of August 2019, I was through chemo, radiation, and my left mastectomy. I was healing, starting to work again, and even took a job watching an Airbnb for a friend & client from January to February 2020. By then, we had heard whispers of COVID, and my cardiac team in Florida set up a visit and we worked out how I would safely fly back in November and December of 2019. I would also be in Miami during the Superbowl, which meant the Airbnb wouldbe packed.
I spent 3+ weeks in Florida, got home at the end of February, and the people I had watched the Airbnb for refused to may me for my work, and instead told me that I was lucky to get a vacation for so cheap. To be clear, they didn’t buy me food, or pay for my gas, and only paid for half my airfare there.
Finally back in Colorado, my roommate sold his house, and I moved in with some other friends for what I thought would only be a few months. I was getting back on my feet, and thought we’d lock down like good humans and get through this pandemic quickly.
I was still not dealing with the trauma of my cardiac issues from years before while continuing my cancer fight and building up more trauma. I snapped somewhere around August or September 2020, called my caseworker, and told her I wanted my life to end. She suggested I go live in a homeless shelter. I finally got to see my oncologist, and told her how I was feeling, and she prescribed me a glorious little pill called escitalopram (Lexapro). She literally saved my life twice.
The first 3 days on the pill were shit. I felt like hell. And then the fog cleared and the angels began to sing. I have been clear ever since, and able to work through my trauma with different providers. It could take years.
Two mastectomies later, I am here to tell you that I no longer feel buried in the muck and I can – with clarity and certainty – help you through your medical trauma with what I have learned.
- Take notes. Record your visits. Notebooks are cheap, and voice recorder apps are often free.
- YOUR SAY IS FINAL! IT’S YOUR BODY. YOU HAVE RIGHTS AND CHOICES.
- Get a team together. This includes your doctors, but also assemble a team of people you know and trust to be your advocates with your care providers. Put them on your notification list, video conference them in during visits when they can’t be there in person. They will be instrumental in asking questions you don’t think of, taking notes, and being your voice when you can’t speak clearly. If you don’t have friends you trust, get new friends, and email me to help you though next steps.
- Don’t be afraid of standing up for yourself. Make it clear that you understand they know medicine, but you know your body better than they do, and since both of you have the goal to keep you alive as long as possible, it would behoove you to work together. If you don’t feel heard, get a new doctor in as much as you can.
- Don’t be afraid of second opinions. And third opinions.
- If you feel unheard, take someone with you.
- If they refuse to do a test or listen to you, ask that they note that in your medical record. “Patient asked for an EKG, Dr. SoAndSo declined to perform the test”.
- Don’t be afraid to fire people who aren’t working out for you. If they’re not a fit, they’re not a fit. If they’re not listening after repeated requests, they’re not a fit. If they insist that their say is final, they’re not a fit
- Understand that the patient advocates in the hospital aren’t there for you, they’re there to make sure the hospital doesn’t get sued, and they’re REALLY good at making patients feel small, insignificant, and gaslit.
- If your hospital or care providers offer it, sign up for their MyChart account so that you have access to after visit notes and recommendations, in case you forget. If they don’t offer it, request a copy of your visit notes and chart info each time you’re there.
- Make one of your trusted people your Medical Power of Attorney (MPOA) in case something happens while you’re in surgery or receiving a treatment, so they can step in and advocate on your behalf to keep you alive within your quality of life parameters.
- Have a living will.
I followed all of these steps, and now I have a world-class medical team who work together to keep me alive as best they can. My Colorado docs and providers all play well together, and my medical advocates – who were found and assembled from some least-likely places – accompany me to appointments and take me to and from surgeries when I need them to. This is what I’m going to miss the most when I get back to Arizona, but I know much more now about what needs to be done and how.
If you need help with any of this, email me. I am happy to help step you through what’s next and what’s helpful.
If you have more tips to add, leave them in the comments below.