Wednesday, October 25, 2023

It's Alive!!!

Just in time for spooky season, the resurrection of the blog! Honestly, I don't know if I can consider it resurrected, but it's a place to share that isn't right on Facebook so it seemed a little more appropriate. Yes, even though many of you come here through Facebook.

Okay. So. I’ve been dealing with something for the last few… six(?)… eight(?) months now and while it all seems very logical and fine to me, when I talk to others, that is not at all the vibe I’ve been getting back from them. At all. This has led me to believe that I’m wrong, even though it’s my body and my feelings, but I also know that my brain does things a little differently sometimes, so I thought I should probably say something before you all hear that I’m in the hospital and find that to be slightly more concerning than interesting.

So here's what's happening:

My mom’s mother died from breast cancer at the age of forty-one. Because of that and another familial connection to this type of cancer, when the opportunity arose to test for a gene mutation that drastically increases one’s chances of getting breast and ovarian cancer, I hopped right on that opportunity. The test took months to return and in the interim I learned all sorts of things, like:

- I'm likely to metabolize caffeine quickly 
- I'm likely to have muscles that don't fatigue easily but aren't as effective at generating power
- I'm likely to not have a sweet tooth
- I'm likely to be able to detect and am likely strongly averse to the smell of asparagus in urine. (Undetermined. I can't even eat asparagus.)
- I'm likely to not enjoy cilantro (thankfully this is very incorrect. Yay!)
- I'm likely to taste the bitter compounds in cruciferous vegetables 
- My face is not likely to flush while drinking alcohol (I don't drink enough to know.)
- I'm likely to stay up late but I don't have the genetic factor that results in delayed sleep.
- I am likely to freckle in the sun, tan, and sunburn only occasionally
- I'm likely to be of average height. For this I want to know: average for what? A female ostrich? Average height for a white woman in the US is 5'-3.9". I am 5'-11". Big miss on this one.

I also learned things about my ancestry, like:

- Despite being 50% German and 50% Norwegian, I also have traces of Finnish, Sardinian (8.4%!), Ashkenazi Jew, Persian (a whopping 4.7%. Seriously, someone has some splaining to do) and Beringian.
- I'm likely to be able to tolerate colder weather better than average (Tell my toes)
- I am not carrying the genetic factor found among the Inuit that helps cope with a high fat diet.
- I am not adapted to high altitudes (This was annoyingly obvious on our honeymoon to Glacier.)
- I am not adapted to avoid Malaria (shocker)
- I can likely tolerate lactose. This one is interesting because I got these results right when I was certain I could no longer tolerate lactose. My solution was to ignore it, power through and increase lactose consumption and now I seem to be better. I think is what the kids call exposure therapy.

Some positive health results were that I don't have any variants associated with Lynch Syndrome which is an inherited condition that increases risks of certain cancers like colon and endometrial. I also don't have an inherited likelihood off high blood cholesterol or heart disease.

Unfortunately, I discovered that I have the BRCA1 gene mutation. (This is the thing that Maya Rudolf was testing for in Wine Country. Great movie. Highly recommend.) This is likely crushing information to most people who receive this knowledge about themselves, but this is the reason why I did the test. It’s not the result I wanted, but it wasn’t at all unexpected either so I had a few cookies and got on with my life and scheduled exactly one million appointments.

Starting back in March, I met with a genetic counselor and then with an oncologist in April. I’ve had an MRI and ultrasound and various other examinations where I been poked, prodded and pricked. All results so far indicate that I am free of cancer and able to make choices in the vein of preventative care which led me to a couple more appointments with general surgery and plastic surgery.

Here’s the thing: there have been great strides made in the detection and treatment of breast cancer for which we are all immensely thankful because it affects so many of us. Ovarian cancer? Not so much. Like, at all. It's embarrassing. Screening isn’t great and often times it isn’t even detected until stage 3 or 4, which is far too late for my liking.

Honestly, I didn’t even need to think about it. Anyone who knows me at all knows that that you could not pay me to have another child. Well, you could, but we’re talking millions of dollars and so far there have been no offers. I wanted a boy and a girl, I got my boy and my girl, and sure, he can’t get from the table to the bathroom without forgetting he went there to wash his hands and she very well may be the cause of my demise (though not purposefully, she’s made that clear), they are happy and healthy and our family has been complete for almost eight years now.

So, I made the decision to have my ovaries removed. On Thursday. Tomorrow. The general population has a 1-2% chance of developing ovarian cancer. My odds are 39-58%. After Thursday, that will drop to zero, and I like those odds a lot more. Without ovaries, I have the choice of going into an early, very harsh, medical menopause, or wearing a hormone replacement patch on my abdomen that I will change out twice per week until I decide to discontinue it. After considering pros and cons, I'm going with the patch.

My doctor is really excited for me, and I think she's excited for her as well. During my examination, while pushing around on my stomach she said, “Yep, this one is going to be easy,” so that was nice to hear. It’s laparoscopic so it’s not even considered ‘major surgery’ and, pending no complications, I will be home and in bed on Thursday evening with strict orders to not move. After hearing of someone who went through this surgery and then tried doing too much too soon and tore her internal stitches, you bet your ass I will be adhering to the orders.

Also, I will be requesting to see what they're taking out. If it’s strange, I don’t care. They’re mine. Now, I’m sure they have to preserve them and whisk them off to pathology and I know I will be in a bit of a stupor, but I think it’s still worth checking.

As for breast cancer, for now I am screening diligently while we get through this ovary crap. My chance of developing breast cancer is greater than 60%, which is, in fact, not at all great, but I’m encouraged by the limited cancer cases throughout my family. I’ve been part of a support group online and some of the women carrying this mutation have cancer by the age of 22, along with 3 sisters, all under the age of thirty, along with mom, aunts and cousins. It's really devastating to hear these stories over and over and over again, but all I can do is be glad that it's not my story. 

So, perhaps my mutant isn’t quite so mutant. Just medium mutant. Or maybe, she’s like me and leans toward the introverted side and doesn’t like to make a fuss. Or maybe she’s lazy and is all, “I could destroy you but I’m just so tired and can’t really be bothered.” You know, like a cat.

Whatever the reason, I’m glad to be in a position to be able to make these choices before they are being made for me. It is recommended that my children be tested when they are in their early twenties and I will leave that choice up to them.

As you can tell, I don't mind talking about this so if you have questions I will answer them to the best of my ability. If this is more information than you wanted to know, well, no one made you read it. That's on you.

To my ovaries: I give a hearty 'thank you' for your years of service and for my healthy babies. I regret to inform you that you will likely not be missed. 

Oh, and for those of you on the edge of your seat just absolutely dying to know how my journey to Mt. Doom is going, I just reached the black gate last week and now I'm almost to Osgiliath and only have 242.03 miles to go!

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