Melanoma Update

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I dropped off the map with my cancer updates.

Before I dig in, I want to give you a little background on why I hesitate to share every detail.

First of all, I dislike when people complain about things they most likely contributed to. I know my diagnosis wasn’t a random series of unfortunate events.

Of course, I didn’t plan for any of this to happen, but I certainly played my part. 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 very young and chose to stay in an environment of constant fight or flight for about 14 years.

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

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, as an attempt to cope. I firmly believe that we teach what we must learn ourselves.

Okay, now that I’ve explained myself—which I have a strong distaste for but felt was relevant to this post and the lack of communication on my part—here’s my update.

1.) I received my genetic test results for the BRAF mutation, and I am negative. My new oncologist was almost certain I would have this particular mutation due to my presentation and age.

I am slightly disappointed because BRAF/MEK inhibitors generally have fewer side effects compared to immunotherapy. On the plus side, this means I do not have the mutation associated with uncontrolled cell division and growth.

The BRAF gene makes a specific protein that helps control cell growth. When you have the BRAF mutation, it’s like a gas pedal stuck down, causing the gene to fail in stopping 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.

Cancer does not like to follow textbooks.

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…

She is an amazing professional who runs clinical studies on MS, diets, and the microbiome. Her recent study, which should be published this week, showed significant improvement for MS patients with dietary interventions similar to the Mediterranean diet.

In this broad, generalized Mediterranean diet, they eliminated all meat and dairy except for fish to ensure adherence. This eliminates ambiguity in a well-controlled study. She mentioned that I was her first patient ever to come in saying I used diet to control my symptoms. Initially, there was a lot of resistance in getting funding because no one believed that anyone would adhere to such a restrictive diet.

I bet these conclusions came from people who never had a serious medical condition. Nothing is as motivating as feeling awful and being able to control it with what you put on your fork.

Anyway, we are waiting for these results to see if a mere 12% increase in non-recurrence of my melanoma, compared to a wait-and-see approach, is worth the potential flare of autoimmunity.

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

I’m starting to look at this collection of scars 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.

Alex didn’t know what he was signing up for, and I wish he didn’t have to deal with this. It’s a terrible position to be in—planning a future with someone only to find out they have cancer. The reality of the person you love facing their mortality isn’t for the faint of heart.

First of all, I strongly dislike relying on someone so heavily for everything. It’s devaluing and hard for someone who has had to develop the mental fortitude to be self-reliant.

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 about that—but this situation takes the choice out of his hands for the most part.

It’s taking everything in me not to tell him to kick rocks. The simple reason is that if he didn’t want to be in this situation, he couldn’t do anything about it without losing self-respect. It would be far easier for me to make that choice for him. I love him more than anything, and it feels like this choice would be in his best interest and save him from future hurt.

5.) I have several doctor’s appointments each week—some of them useless, others enlightening. Some are hard, and some just feel like a waste of time.

There are still more scans to be done and more test results to wait for. I’m just going through the motions currently.

As hard as it is to accept, cancer is a blessing in the sense that it forces you to face all of your insecurities and quickly restructure your priorities.

Comment over here.

For past updates check here and here.

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