Open Letter to Dr. Brian Samuels, Oncologist

Open Letter to Dr. Brian Samuels, Oncologist

First, a pre-emptive apology to any Dr. Brian Samuels who is not the same Dr. Samuels who recently made my life a total fucking nightmare. I wasn’t given any contact information or license number and I have no better way of directing this correspondence or clarifying its intended recipient other than to say that I’m writing this to the guy who gets paid by Lincoln Financial Group (LFG) to say it’s okay if they cancel my long-term disability claim.

Dear Dr. Samuels,

My name is Emily Suess, and while you might recognize the name because it’s a relatively unusual one, you won’t be able to match it to a face. That’s because you’ve never met me. We’ve never exchanged emails, Skyped, talked on the phone, or been in close enough proximity that I could throw a used tampon at you. (Okay, full disclosure, I couldn’t throw a used tampon at you anyway because chemotherapy forced me into early menopause and dried up my uterus. I haven’t had a period in well over a year now. But you’d know that if you’d ever interviewed me or completed a full physical examination.)

The point is, we’ve never met at all. Despite that, though, you came to some really specific conclusions about me that stripped me of about $900 a month in disability income that I desperately need to pay for such frivolities as food and shelter for me and my also-disabled husband.

While I’d like to be able to scoop out my cancerous brain tumor with a grapefruit spoon and drop it into whatever you’re eating for breakfast this morning, I’ll have to settle for giving you a piece of my mind this way instead. Publicly. On the internet. Because that’s the only option I have. You can blame yourself for that.

Last night while unable to sleep due to things like GERD, the sensation that an elephant was sitting on my chest, and the constant, pulsing rage-whoosh in my right ear, I couldn’t help but wonder, Do doctors really give an oath to ‘do no harm’ or is that just something that’s played up on TV to romanticize the profession? Because this is the second goddamn time in my life I’ve had to do something like this to get a doctor to wake the fuck up.

My first open letter was written to my rheumatologist’s employer circa 2014. Boy was that guy a jerk. He always talked over me, outright dismissing my concerns that his fibromyalgia and depression diagnoses needed a little fine-tuning. He also ignored a couple of pretty significant symptoms—chronic muscle weakness and numbness in my extremities—presumably because they just didn’t really work for him.  That arrogant fucking prick just couldn’t fucking be bothered to consider whether he’d made an error in his initial diagnosis, and as a result a cancerous mass on my brain stem was left to grow, unchecked, for another two years. You’ve probably seen the pictures.

Anyway, I hobbled out of his office one day in a rage, not knowing what was wrong but trusting fully that he wasn’t going to be the one to figure it out. Unfortunately, his lazy-ass diagnosis followed me to every other doctor I tried to see for the next several months. At one doctor’s office I was even denied an appointment despite having a referral because—and I quote—“the doctor doesn’t see fibro patients.”

The rheumatologists, cardiologists, nurse practitioners, internists, physical therapists, gastroenterologists, and neurologists that would take my co-pays all saw a fat, 30-something woman sitting in front of them, noted fibro on her chart, and shrugged indifferently.

On more than one office visit I was reduced to uncontrollably sobbing on the exam room table because I was: 1.) in constant, relentless pain and presumed to be lying about it to get pain pills; 2.) shitting myself three or four times a week because it took me so long to walk from my couch to the bathroom; and 3.) routinely being berated for not participating in a prescribed regular exercise routine which I was physically incapable of performing.

It wasn’t until I feebly begged my primary physician in the presence of my husband to please, for the love of God, rule out multiple sclerosis that she performed a more thorough physical examination. That exam revealed clonus and led to me finally getting the first MRI of my life.

Immediately after my primary physician broke the news to me that I had a brain tumor, my husband wheeled me down the clinic hallway to check out. “I told them I was sick!” I laughed.

Later, I would think to myself, Jesus, what a sick fucking reaction to have to my own brain tumor diagnosis. But I’ve had a couple of years to reflect on these events, and I realize now that I hadn’t yet processed the tumor part of things in that moment. I was just reveling in an overwhelming sense of relief that I could finally shove an MRI in the face of the next dismissive motherfucker in a white coat who tried to gaslight me.

This’ll level the playing field, I thought.

How naive of me.

Just in case you don’t keep track of the lives you unwittingly destroy, let me give you a quick rundown of the things that you’ve said about me that are, in fact, complete bullshit:

  • That I am able to “constantly sit, push, and pull”
  • That I am able to stand and walk for up to 30 minutes without a break
  • That I am able to “occasionally squat, climb (!!), twist, kneel, crawl (!!), and lift 20 pounds
  • That “in your opinion” I “should be able to complete an eight-hour workday with rest breaks as needed”

It’s my understanding from the letter sent by LFG that you based these nonsense claims exclusively on records obtained from my oncologist’s and primary physician’s offices. The picture you have of my present health condition is woefully incomplete, and if you had bothered to check with the person most intimately familiar with my medical history, ME, you would fucking know this too.

Unfortunately for me, you’re just arrogant enough to think you’re qualified to make this kind of life-altering decision for a stranger without first gathering all the facts and/or just presumptuous enough to trust that a handful of doctor’s office documents not only contain enough information to develop an informed opinion on the matter but that said documents are free of errors and omissions.

First, let me discuss the documents provided by my primary physician’s office dated 2/3/2017. I will assume they are factually accurate, though I have not yet seen for myself what they sent LFG.

  • They are more than two years old and predate any further permanent decline in my physical and mental health as a result of chemotherapy and radiation therapy.
  • The last time I even saw my primary doctor was more than a year ago and that was only to check my Vitamin D level and confirm that my levothyroxine dosage was still in therapeutic range.
  • My primary physician has never seen me perform any of the abilities you claim I possess. She has only ever seen me sitting in an exam room chair, walking approximately twenty feet down a clinic hallway, or lying on an exam room table for my annual exam. Furthermore, she has not even asked me if I can perform these physical tasks. If she has offered a professional assessment to a third party about my current level of disability, and I doubt she has, she has done so (like you) in ignorance.
  • She has not inquired about nor assessed my mental health, stress levels, or overall well-being.
  • She does not currently treat, or participate in the management of, my cancer or cancer-related symptoms.

Next up, what you need to know about the information and documentation provided by my oncologist’s office:

  • I do not know what is contained in the treatment notes, physician statements, or the abilities forms you reviewed. I cannot confirm whether any of them are complete or accurate.
  • I do know the attending physician statement dated 1/18/2019 was compiled by a nurse who wrote on 1/16/2019 in a patient portal email: “As I have not personally met you, all I have to go on is notes in your chart which are not as specific as what you can provide to me in regards to how your symptoms affect you.” I was never shown the final statement to verify its completeness or accuracy, and I’d put money on that form being stamped or digitally signed by someone (not my doctor) who has also never met me. If my oncologist did sign that statement, he didn’t read it. And if you really are a doctor like LFG claims, you know exactly what the fuck I’m talking about.
  • Like my primary doctor, my oncologist has never seen me perform any of the abilities you claim I possess. He has only ever seen me sitting in an exam room chair and walking approximately twenty feet down a Siteman Cancer Center hallway. Furthermore, he has not asked me if I can perform these physical tasks either. If he has offered a professional assessment to a third party about my current level of disability, he has done so (again, like you) in ignorance.
  • He has not inquired about nor assessed my mental health, stress levels, or overall well-being.
  • He only meets with me approximately every third office visit. Most often a Nurse Practitioner in his office evaluates me. During this examination, I climb one step onto the exam table, push and pull with my arms for approximately one second, push and pull with my legs for approximately one second, touch my index finger to my nose and then her index finger, have a pen light flashed in my eyes, and open my mouth and say ah.
  • The earliest discussions of my chronic pain, neuropathy, migraines, fatigue, balance, and coordination issues included a summary dismissal, all simply labeled my “new normal,” as if that made them go away. I receive no mediating treatment for any of them, and no longer discuss them during follow-ups because I’m not particularly keen to waste the precious time I have left on this earth.

Now back to the giant, gaping flaw in this process that no one seems to give two shits about but me: my involvement in this clusterfuck of a disability determination. The only interview I gave in relation to LFG’s decision to cancel my long-term disability claim—the only primary knowledge any of you assholes has—is similarly incomplete.

To begin with, you need to understand that the stigma of chronic illness and disability make me reticent to talk with anyone about how bad things truly are. I am just barely comfortable detailing the particulars of my disability with doctors with whom I have established an actual rapport.

So when an insurance company employee with no medical training says to me over the phone, “tell me about your disability,” I immediately panic because I know the consequences of fucking up are huge, and I know she’s just waiting for me to say something that gets her employer off the hook for fulfilling the terms in the LTD policy I paid for.

Just like all the other stuff you’ve based your decision on, I can’t verify that she understood me or that she relayed information to you and LFG accurately, because I’ve never seen her report.

I also can’t even fucking remember what I ate for breakfast yesterday because my short-term memory is shit. Whether that’s a result of the brain tumor, elevated stress, emotional trauma, having my brain zapped with radiation or wrecked by chemotherapy, or any possible combination of those things, I can’t say for sure.

What I can say is that if you were a responsible, compassionate doctor, you wouldn’t agree to be a part of this sham process. You wouldn’t recklessly make such an important decision that deprives two people of their safety and security without, at bare minimum, sending me an email and asking if there’s anything else you should know. You would insist that such an important decision be made carefully and with as much thoughtful consideration as you’d choose a cancer treatment for someone sitting right in front of you. Because financial security is a fundamental component of every patient’s health.

You and every other doctor in the world need to internalize that one simple truth, especially if you’re going to expand your occupational duties to include shit like protecting an insurance company’s bottom line. Because when you do that at the expense of patients like me, you are causing direct harm.

Last night after reading LFG’s letter I couldn’t sleep and things felt so hopeless for me that I was slipping into a really dark place. And not for the first time in my life. With a BP of 141/95 and a resting pulse of 130, instinctively I knew that I couldn’t let myself continue down that path or bad things could happen. So my fight-or-flight response brought me to this safer, if more profane, headspace where I hate you. Hating you is how I survive because it distracts me from an overwhelming and dark reality that there are doctors who don’t care enough whether I have a roof over my head or food in my cupboards to even ask me how things are going.

I’m not mad that you are wrong about me. I am mad that you didn’t even try to be right when so much is at stake.

Thanks to you, Dr. Samuels, I now have to fight an appeals battle in addition to my daily fight against brain cancer. May this letter bring you the same gastrointestinal disturbances I am experiencing right now. I hope that you have no recourse but to be a better person and a better fucking doctor to make it stop.

Fuck you from the bottom of my tachycardic heart,

Emily Suess

UPDATE: After requesting a license number from Lincoln Financial Group, I can confirm this is the guy.

Who You Gonna Believe: FAQs

Who You Gonna Believe: FAQs

WHAT IS WHO YOU GONNA BELIEVE?

Who You Gonna Believe is my memoir. It’s covers my eventful life circa 2003 to present and explores the traumas and lessons that come with being married to a self-professed compulsive liar and narcissist. (For the record, I use the word “narcissist” colloquially, not clinically. But I think a case could be made.) Then it takes a look at how those events might have maybe saved my life.

Wut?

Yeah, I know.

DO YOU NAME NAMES?

No. I’ve changed most of the names and obscured certain identifying details with the sole intent of avoiding being contacted by my ex. (I’m 99% sure he still Googles himself daily, if not hourly.) Of course, people who have known me for years will know who I’m writing about. But in that case, I can’t really further defame a person who’s already publicly defamed himself.

HOW CAN I READ WHO YOU GONNA BELIEVE?

WYGB is being published serially and exclusively for my Patreon Patrons. All chapters are available on Patreon and excerpts may be available on other platforms. Update: As of December 2019, I am working hard to make WYGB available on this website. If you encounter snags here, you can always access content through patreon.com/EmilySuess.

Become a Patron!

SERIALLY? WHAT DOES THAT EVEN MEAN?

Chapters will be published on a monthly basis at the end of each month or as soon as I reach a new subscriber goal. For example, Chapter 1 is scheduled for release on April 30, 2019. However, if I reach 20 patrons before that date, Chapter 1 will drop early. (See the Goals section on my Patreon page for current release information.) I will make every effort to publish new content 24-48 hours after a goal is reached. However, I’m disabled and have brain cancer and hope you’ll all be understanding if I have to fudge that a little bit once or twice.

CAN I SHARE MY ACCOUNT WITH NON-PATRONS?

I think one subscriber per household is pretty fair considering you can choose what you pay, but if you want to share posts with your grandma in Tallahassee I’m not going to crap a brick. I also won’t be policing who’s paying to read and who’s found a way to read it for free. Hell, if you want to print and distribute copies for your own profit, all I ask is that you be willing to live with the guilt of stealing money from someone with brain cancer. Basically, just do what you think is fair and support me if you can, okay?

CAN I PAY TO READ THE WHOLE THING AT ONCE?

No, but not because I’m a jerk. You can’t read the whole thing at once because I’m not finished with it yet. In an ideal world this could have maybe been an option for readers, but as I mentioned previously, Lincoln Financial Group terminated my disability insurance policy unexpectedly and I had to start releasing the parts that were ready way ahead of schedule.

Then again, in an ideal world I wouldn’t have a diffuse astrocytoma on my brain stem. Just… it’s not an option. Alright? Gosh.

IS THERE A TABLE OF CONTENTS OR SOMETHING?

Yep! These regularly updated links take you to each of the original Patreon posts.

Who You Gonna Believe: Preface
Chapter 1: Triggered
Chapter 2: You’re Wearing That?
Chapter 3: Suicide is Painless
Chapter 4: Liar, Liar
Chapter 5: Back Home Again in Indiana
Chapter 6: Christian Counseling
Chapter 7: Fuck You, I Live Here
Chapter 8: Good Luck with That
Chapter 9: Corpse Pose

Become a Patron!
Zentangle Pattern Warmth: Day 37

Zentangle Pattern Warmth: Day 37

I’m no Bob Ross, but I like to think that posting these doodle art videos will be relaxing and maybe even inspiring for some of you. This One Zentangle a Day practice has helped me clear my head and distract myself from all the yucky things I torture myself by thinking about during the day. Let’s look at Zentangle pattern Warmth.

Day 37 of One Zentangle a Day includes the Zentangle pattern Warmth. The Zentangle inspired art created today once again uses an official Zentangle tile and the same alcohol-based markers I used for day 36.

Even though it’s not the most complicated or intricate of Zentangle patterns, I’m very happy with how this turned out. I have a feeling that the pattern combinations I used on today’s tile might find their way into some other larger projects I take on down the road.

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I’ve been reading up a little on Zentangling and the creators of the practice. I learned that they actually have training seminars so enthusiasts can become certified teachers. Even if I could, I don’t think I’d want to teach Zentangle, but I’m a little interested in going through the workshops just for the sake of learning if they’re ever offered near me.

Materials Used

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Zentangle Mosaic: Day 36

Zentangle Mosaic: Day 36

Here we go, folks. It’s time for the next video in my One Zentangle a Day series. Is it just me, or have my Zentangle skills improved already? I hope you guys like this one as much as I do. It is a three-tile Zentangle mosaic.

I think the warm gray (You call that gray, Bianyo?? Really??) tones on these ivory tiles are so pretty. I’d kind of like to set this grouping in a frame, that is, if I can find something that works. 

(UPDATE: I split these tiles up and ending up giving them as swag to my Patrons. But I’m still intrigued by the idea of framing a series of tiles that create a larger work when placed side by side. I’m making a mental note.)

I’ve added a set of sepia colored Micron pens to my YouTube channel wishlist too. Even though I love how this ensemble turned out, I think the line art would be AMAZING in a brown ink instead of black. What do you think?

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Don’t forget to like this video and subscribe to my channel on YouTube if you’d like to see more videos like this in the future. I’m getting close to the end of Beckah Krahula’s book, and am trying to figure out if you guys are interested in seeing more.

I also want to see your work. Whether your creating videos or blogging your art or posting to Instagram (there is a huge community of Zentanglers on Instagram!) drop me a link so I can check out your creations.

Zentangle-Inspired Mandala Art: Day 35

Zentangle-Inspired Mandala Art: Day 35

For Day 35, we’re practicing our third and final Zendala, which is Zentangle-inspired mandala art. The outline for this Zentangle was taken straight from Beckah Krahula’s book One Zentangle a Day: a 6-Week Course in Creative Drawing for Relaxation, Inspiration, and Fun, in case you were wondering why how I got it to look so symmetrical. The answer is — I traced it.

I highly recommend the book, by the way, if you are wanting to learn to Zentangle or if even you’re a Zentangle master just looking for inspiration to get back into a daily practice. You can just look at the pictures and tear through the exercises with abandon, or you read each carefully constructed lesson and really dig into the whats and whys and hows of the art.

I’ve been trying to post each of my videos here on the blog, so check out the Zentangles topic if you’d like to have a glance at what else I’ve created during this series. As always, I hope you’ll like and subscribe to my YouTube channel if you’re enjoying these videos. That lets YouTube know you like my channel and it helps other people find it through search and related content suggestions.

Zentangle Zendala Tile: Day 34

Zentangle Zendala Tile: Day 34

For Day 34, we’re practicing another Zentangle Zendala tile. A Zendala is a combination of Zentangle- and mandala-inspired art. What I like about them is the symmetry you can achieve by outlining a basic 360-degree pattern and then filling it in.

The Zendala I created for today’s lesson has a very geometric look to it, but you could just as easily use more organic, flowing patterns to give the art a softer more flower-like appearance.

In fact, I’d suggest making several copies of the basic outline in a sketchbook and then trying several different approaches to filling them in. The ‘Tangler in me really wants to fill every page of a notebook with the same basic outline and see how many different Zendalas I can create. Because some days, when my hands are too cramped or my pain is off the charts, I like to just flip through the library of art I’ve created. I promise it’s every bit as relaxing as actually drawing the art. Maybe even more so.

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Anyway, I wanted to add color to today’s piece, so I went for a more simplified design this time around and used my Bianyo alcohol-based markers. I’m still learning how to select a good color palette, so I’m not crazy about the end result here, but I don’t hate it either.

Want to try your hand at creating your own Zentangles? I recommend Beckah Krahula’s book One Zentangle a Day: A 6 Week Course in Creative Drawing for Relaxation, Inspiration, and Fun. For pattern ideas, check out my post Zentangle Inspired Doodles.

Zentangle Zendala: Day 33

Zentangle Zendala: Day 33

For Day 33, we’re practicing a Zentangle Zendala, which is Zentangle inspired mandala art. At the request of one of my patrons, I’m slowing things down a bit and offering you what I hope to be a super relaxing and satisfying Zentangle video.

Because this video is real time, it’s a several minutes longer than other other videos I’ve created in this series. But hopefully you’ll find it’s well worth the watch time. If you like it, you can thank my friend Becky for her support and the video suggestion! And remember, if you’re pressed for time, you can always speed up any video by manually changing the playback rate through the YouTube interface. (Click the ‘Settings’ wheel on the bottom of the video and choose the playback speed you prefer.)

I’ve been enjoying creating this series for you guys. Putting these videos online is giving me an opportunity to pick up some new skills in addition to practicing art. For one, I’m learning some very basic video editing skills with Shotcut, but I’m learning the basics of growing a YouTube channel. Starting a channel from scratch helps me appreciate how truly effortless my favorite art YouTubers make this stuff look. There is so much that goes into creating video content, but so much more that goes into marketing, sharing, and optimizing those videos for search. Because if your videos don’t come up in a search, new people can’t find the stuff you worked so hard to create.

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So, having said all that, I hope you’ll consider giving my videos a like on YouTube and subscribing to my channel. Every time you interact with my content, it lets the YouTube algorithms know that people are engaged. And that means they’ll suggest my videos to other people interested in Zentangle art. And *that* means I’ll be able to connect with other fans of the practice.

Zentangle Video: Day 32

Zentangle Video: Day 32


Y’all, I am so excited about today’s video. If you have seen any of the previous videos in this series, you know that I’m basically a video editing n00b. I am just learning as I go and hoping that with each day comes a little improvement in the quality of my One Zentangle a Day series of YouTube videos. Today’s Zentangle video feels like a personal breakthrough, and it’s exciting to see my own progress!

Some days that improvement just translates into me getting through the video editing process a little quicker. Other days, it means trying out new music or experimenting with voiceovers and all the editing that requires.

Today, I was playing around in Shotcut software, and I tried laying two (Yes, TWO!) background audio tracks. One is a lovely little classical number and the second is a forest full of birds chirping and singing.

Pairing the two audio tracks resulted in the most soothing, satisfying Zentangle video I’ve produced to date. I want to watch it over and over, which is uncommon for me. Normally I cringe all the way through these things on playback.

Anyway, I don’t know if this will be your cup of tea or not, but I hope it is. Thanks for watching today’s Zentangle video, an I will catch you in the next one.

Happy tangling!

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Finding Zentangle Patterns: Day 30

Finding Zentangle Patterns: Day 30


Today is Day 30 of One Zentangle a Day, and today’s focus is on finding Zentangle patterns in the everyday stuff around you and then translating that into your own Zentangles. I took inspiration from the pattern on a lamp shade and then threw in some Zentangle patterns from previous days’ lessons. 

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