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  • Emily

there will be feasting and dancing

Hello! Today is the one-year anniversary of my diagnosis. So buckle up, I'm going to do a big wordy chapter of what this whole rollercoaster has been for me including some now-relevant back-story. If you've been with me since the beginning, feel free to scroll down to the final section about today.


But for everyone either reading this all for the first time (or a glutton for the punishment that is Reading My Prose), here we go:


One year ago today, and two weeks after a "cyst" was surgically removed from my shoulder, the dermatologist's office called asking for me to come into the office. I knew it couldn't be good news, so I made Isaac go with me. We were shuffled into a downstairs consultation room that I had never seen before and haven't seen again since. They were playing the local radio station and as we waited we hear Whitney Houston's I Wanna Dance With Somebody.


But let's back up. That's where the story starts though, isn't it? Oh, dear friend, it's not though. There's so much that led to that day that I haven't really gotten into. So here goes! Also, if you're squeamish, I recommend you scroll down to the end. It's not *super* gross, but it's not *not* gross. Though I suppose you don't follow a cancer blog expecting everything to be clean and put together, hm?


--contextual backstory--


For my entire life, I knew I had a mole on the very center of my back. Let's be real, I'm a moley person. I was used to it! I saw a dermatologist in high school and he was alarmed by the moles on my left arm (--coincidentally, those moles have been completely normal since). In roughly 2018 or 2019 I remember noticing that the mole in the center of my back was becoming bothersome. It started small: a catch on my bra, a snag. I had a bra with a perpetual blood stain on the back from where the lace rubbed against that stupid mole. Then in 2020 I started noticing it more. It was perpetually annoying. It would get blood on my clothes. It would hit the back of the chair when I sat. It was hindering my COVID-era at-home workouts because it hurt every time I tried to do crunches. And although I could see it in the mirror, it wasn't quite enough and I couldn't honestly tell that something was going wrong with it. And I never really asked for help. But dammit, that one small mole on my back was ruining comfort in my life! I had also gained some weight that I couldn't get rid of, but I didn't think much of it because, again, COVID-era everything.


For more context, when all this happened in 2020 I had just started a new job that had a probationary period of 90 days before you were eligible to enroll in health insurance. This is important to the story because if I had gone to the doctor when it all started, I probably wouldn't have written a blog about what happened. But I waited, and then COVID hit, I got laid off, and I took a new job that, despite being in the HEALTH INDUSTRY, did not offer health insurance as a day-one perk. I found myself in a situation where going to the doctor was kind of out of the question.


So I took matters into my own hands.

What I lack in common sense I certainly make up for in grit and resourcefulness!


--icky warning--


I had heard of a trick to remove skin tags at home with dental floss. Just wrap the dental floss around the thing, and tighten the floss a little every day. So I took some mint-flavored dental floss, worked behind my back where I couldn't even see, and I got the floss wrapped around. It took almost a month, and boy howdy I do not recommend it because of how much it hurt. But sure enough, the damn thing eventually popped right off. And I remember that moment because I thought to myself "hmm... you know what, I should keep that just in case I need to get it tested someday." -- and like a completely normal person and not a weirdo at all, I put the ugly little mole that I had removed from my own backflesh with dental floss, and I put it in a tiny ziplock bag that had previously held some earrings I had purchased, and I stored that evil thing in my jewelry box. Like a totally normal person.


Later, when I finally had enrolled in health insurance, and I was noticing quarter-sized lumps growing on my back, I was able to get a video visit with a random doctor through some health app my then-job was providing. That doctor told me in a thick southern accent that he had taken a look at the picture I had provided and decided that what I had was lipomas, benign little fat deposits that are common in older men and usually genetic. I didn't think anyone in my family had those, so that felt weird-- but okay! I put the issue out of my mind.


--fast forward--


On August 18, 2021 at around 2 pm the dermatologist came into the consultation room, interrupting the lively 80s music. She sat us down and explained to me that the cyst they had removed was, in fact, a stage 4 melanoma. She said that she had already scheduled me a meeting with another doctor later that afternoon if I wanted it and that I should start making copies of all health-related paperwork and carry it around in a binder because things were going to get complicated (she was not wrong). After the first round of disbelief and tears, she offered me a hug, which I gratefully accepted.


That afternoon I called my family, one by one, to tell them the worst news I've ever had to give. Isaac drove us through the drive-through at Wendy's on the way home because we hadn't eaten anything all day out of anxiety. I remember thinking "what exactly is the use of eating healthy food now?" -- yet nothing really ruins an appetite like that sort of news. We didn't finish our fries.



**Today** -- hi! here's where the new stuff is

This morning I woke up to the sound of rain and a cool breeze through the window. I drank my coffee, had some breakfast, took my pills, and I ran 5k in perfect temperatures with a wonderful breeze. Downright blissful!


Yesterday was my quarterly skin check with my wonderful dermatologist. She didn't find anything terribly pressing, although there is an oddity on the back of my left leg where my vitiligo is giving one of my darker moles a light halo. She'll be checking back in on that one because it's caught our attention before. She was happy to hear that I'm exercising and singing again!


To my surprise, she also mentioned that they had finally tested that stupid little mole that I'd removed, and it indeed proved that the mole on the center of my back was the primary. This was the question that haunted me in the early days of my diagnosis. My oncologist was pretty sure that was it, but my dermatologist wasn't convinced. She said she's never heard of a sample being viable after 2 years (for the record, I took it into their office about 9 months ago) but if I consent to it she'll write up my story for posterity. A hell of a story, and I'm happy to see it get told.


My dermatologist gave me suggestions for more stuff I can do to cover up my vitiligo and melasma. I appreciate her trying to help but I really (forgive me) couldn't give two shits about how I look. I have earned every weird spot on my skin, and I consider it a badge of honor! If someone doesn't want to hire me for a singing gig because of my skin spots, well, they don't sound like they'd be fun to sing for.


I go in for another treatment next week. I am about halfway through treatments, and I should be getting another PET scan in September. I am mildly anxious about it but also determined it'll come out clear. I believe the fact that I'm feeling good means that I should trust my body to keep me healthy! I'll let you know how that turns out, of course.


Anyway, here are some of the lessons I've learned in the past year:

  1. Your health is not about you. It is about everyone who loves you. You are doing a favor to those who love you by taking care of yourself.

  2. Be honest about how you're really feeling! Don't always try to power through if it will only make you hurt more.

  3. People will show you incredible kindness when you've been diagnosed with cancer. Maybe the best Thank You you can ever show them is giving them that kindness in return, and giving it out willingly to all.

  4. Bad luck and good luck are not mutually exclusive.

  5. If something is weird and new about your skin, go to the doctor, do not pass go, get thee to a dermatologist for the love of all that is holy. Out-of-pocket expenses are comparatively a lot cheaper than cancer treatment expenses!

  6. If a small voice is telling you to store something in your jewelry box just in case, you should probably listen to it. It's not weird! (Okay it is a little weird)


Anyway, thank you as always for reading along on this journey. Part of what has kept me strong through everything was having a community behind me. I appreciate you all for being with me along the way <3



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4 Comments


jewel.hainer
Aug 22, 2022

You feeling so healthy is great news! Your positive attitude and willingness to share your sadness and joys is such a show of the strength you've carried into this fight. I love you for it.

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Emily
Emily
Aug 23, 2022
Replying to

Thank you! Honestly it’s helped me know that I’m not alone going through this because I have you with me!

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Guest
Aug 18, 2022

Emily, congrats on surviving this year, both physically and emotionally with your wonderful sense of humor still intact. Thank you for being so open with us about your journey. You are one gutsy woman! Love, Ellen G.

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canarydoor
Aug 18, 2022

Thank you for this - it's awesome on so many levels, but mostly - of course! - that you are doing so well!! ❤️



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