Melanoma Update

Updated: Feb 9, 2020


I dropped off the map with my cancer updates.⁣⁣

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Before I dig in I will give you a little background on why I hesitate to share every detail… ⁣⁣

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First of all I dislike when people complain about things they most likely fed into. Hai friends, I know my diagnosis wasn’t a 𝘳𝘢𝘯𝘥𝘰𝘮 𝘴𝘦𝘳𝘪𝘦𝘴 𝘰𝘧 𝘶𝘯𝘧𝘰𝘳𝘵𝘶𝘯𝘢𝘵𝘦 𝘦𝘷𝘦𝘯𝘵𝘴. ⁣⁣

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Of course I didn’t plan for any of this to happen, but I for damn sure played my part here. I chose to marry a damaged soul and proceeded to try to fix him — which we all know how that turns out... I made this choice when I was super young and I chose to stay in an environment that I was in constant fight or flight for ~14 years. ⁣⁣

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𝘐 𝘩𝘢𝘥 𝘭𝘦𝘴𝘴𝘰𝘯𝘴 𝘵𝘰 𝘭𝘦𝘢𝘳𝘯 𝘢𝘯𝘥 𝘩𝘦𝘢𝘭𝘪𝘯𝘨 𝘵𝘰 𝘥𝘰 𝘩𝘦𝘳𝘦. I’m hard headed and it took me a long time to learn these lessons. ⁣⁣

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I then chose to treat my body like a vehicle for my most prized possession — 𝘮𝘺 𝘣𝘳𝘢𝘪𝘯 — in other words, I regularly equated my body to a hedonic trashcan for a year post divorce, in an attempt to cope. I’m a firm believer in —> 𝘸𝘦 𝘵𝘦𝘢𝘤𝘩 𝘸𝘩𝘢𝘵 𝘸𝘦 𝘮𝘶𝘴𝘵 𝘭𝘦𝘢𝘳𝘯 𝘰𝘶𝘳𝘴𝘦𝘭𝘷𝘦𝘴. ⁣⁣

Ok, now that I’m done explaining myself which I also have a strong distaste for — but also felt strongly relevant to this post and lack of communication on my part, I will update everyone.

1.) I received my genetic test back for BRAF and I am negative. My new oncologist was almost positive I would have this particular mutation due to the way I presented and my age. ⁣⁣

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I am slightly disappointed here because the BRAF/MEK blockers don’t have as many side effects as immunotherapy. But on the plus side this does mean I do not have the mutation that is associated with uncontrolled cell division and growth. ⁣⁣

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BRAF gene makes a specific protein that helps control cell growth. When you have the BRAF mutation it is akin to a gas pedal that gets stuck down, and the gene can’t stop the uncontrolled cell growth that leads to cancer. My outcome 𝘤𝘰𝘶𝘭𝘥 be worse if I had this mutation. But I also 𝘤𝘰𝘶𝘭𝘥 have something going on that they cannot predict. ⁣⁣

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Cancer does not like to follow textbooks. ⁣

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2.) I’ve been working with a neurologist and we are testing for various autoimmune conditions that have the onset of optic neuritis. So more needles and scans… ⁣⁣

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Super amazing lady. She runs clinical studies on MS, diets, and the microbiome. ⁣⁣

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The recent study that should be published this week, showed a huge improvement for MS with dietary interventions similar to the Mediterranean diet. ⁣⁣

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It was the broad generalized Mediterranean diet — they eliminated all meat and dairy except fish due to adherence. As it eliminates ambiguity in a well controlled study. She said I was her first patient ever to come in saying I used diet to control my symptoms. There has been a lot of resistance initially getting funding because no one believed that anyone would adhere to such a restrictive diet. ⁣⁣

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I’m betting these conclusions came from humans that never had a serious medical condition. Nothing is as ‘motivating’ as feeling like shit and being able to control it with what you put on your fork. ⁣⁣

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Anyways, we are waiting for these results to see if a mere 12% increase in non reoccurrence of my melanoma — compared to wait and see, is worth the potential flare of autoimmunity.⁣⁣

3.) I have another surgery on the 8th for some reconstructive work. They will be taking skin off my ass to graft onto my leg. First thought: wonderful another scar to add to my growing collection. I am going to look like a patchwork doll when I am done here, but hey —> I am still alive. Which is important to me because I don’t feel my work is done here yet. ⁣⁣

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I’m looking at this collection of scars kind of like my tattoos. Every tattoo I have came after a life shattering event. Now instead of ink to remind me to stay 𝘩𝘶𝘮𝘣𝘭𝘦, I will have scars scattered on my body. ⁣⁣

4.) I am trying to release a lot of shame and personal sticking points right now. ⁣⁣

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Alex didn’t know what he was signing up for and I wish he didn’t have to deal with this. What a shitty position to be in. Painting someone into your future plans to find out they have cancer. The reality of the person you love having their mortality thrown into the mix, isn’t for the 𝘧𝘢𝘪𝘯𝘵 𝘰𝘧 𝘩𝘦𝘢𝘳𝘵. ⁣⁣

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First of all; I fucking strongly dislike relying on someone so heavily for everything. It is devaluing and hard on someone whom has had to develop the mental fortitude to be self reliant. ⁣⁣

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Secondly; I strongly dislike that someone feels obligated to me. I have never wanted anyone to feel they 𝘴𝘩𝘰𝘶𝘭𝘥 be with me. Sure, he loves me. I have no doubts there, but this takes the choice out of his hands for the most part. ⁣⁣

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