CHEK2 Clarity

 

All right. We did a mammogram instead of an MRI so I could talk to the staff more about my special snowflake ass.

Mammogram is clean.

Without CHEK2, my risk for breast cancer would be ridiculously low as there's no family history across multiple generations.

But with CHEK2 it can be as much as 40%.

Boo.

However, a mastectomy isn't in the cards as things stand now. Which was the absolute best news. OMG. 

They suggested Tamoxifen but I'm undecided. Someone shared with me that it caused people in their family to grow tumors, which I know, I know, it's anecdotal. I don't care. I find that anecdotal stuff can link up with evidence quite often. And I'm not looking to give my tendency to grow beaucoup tumors a boost. We'll see. 

The really nice thing is I don't have to make any decisions now, so I'm not. I'm tabling it. I have enough going on as it is, and in reality, the colonoscopy I need is more critical as I'm late on that screening no thanks to the liver and the pandemic.

As for the MRI...I would like to do one and then maybe again every few years instead of yearly. They said I could do a second mammograms with ultrasound in lieu of an MRI. At the moment, I'm thinking (things could change) I will do one initial MRI as it's way more accurate than a mammogram (65% vs 95% I was told). It seems prudent to have a good look and then switch to mammogram with ultrasound.

They did offer me the option of something called a fast MRI which uses less contrast, but I don't know if that matters when there's an allergy. And of course, insurance won't cover it.

The oncologist had actually heard of CHEK2 which was refreshing. I've been surprised by how few physicians know what it is. But while the Onc knew what CHEK2 was, none of the risk assessments they do take it into account. Everything is BRCA focused, from the paperwork, the risk assessments, even the techs talked to me about 'your BRCA mutation' lol.  

The upshot: It's difficult to really understand my actual risk. Everything is a guess. Am I the full 40% risk or less? Who knows?

Hmmm. I get why people might find a medical medium useful. There's just so much guesswork and shooting in the dark that Tarot cards and good vibes and spirit guides might just have some insight. It's not like anyone else knows...

On the what's life like post-covid front...I'm still really fucking tired. I've actually started napping. Like, more than once. Jesus. I never nap. This is highly unusual. On the upside, the sleep feels healing. Maybe it'll be a net positive. I'm trying to pay more attention to pacing myself and building in more down time, which isn't easy right now. But I'm trying. 

Eating is going better. Weight loss has stopped. I think I've even gained some back. I beefed up my calories for a bit to aid recovery and now that things seem stable, it's time to tighten up again.

In other news... some mom posting for ya.

The teen took her English placement test for dual enrollment and placed at college level, which was good. Writing is her strong suit, but she's not a pressure performer so it could have gone either way. And I feel vindicated as a homeschooler (yes, we did, in fact, provide a good education for our kid) but also my mom instinct was that she was ready for college and look, here she is proving it.

Next up, we have the Math placement test which is even more of a wild card in terms of performance under pressure. She might do great and end up placed at a level she's not actually ready for (not good), or she'll bomb and be in remedial math (not good but doable). I'd prefer she not inadvertently outpace her actual skill level, and I'd be fine if she came in at a level a bit below her capabilities as it'll allow her to learn what college is like without also feeling like she's drowning. 

Being naturally mathy but not consistently so is a tough mix. It's like being a brilliant chef but you can only cook with your hands tied behind your back. She can intuit a lot of math on her own, but not all of it and then that pisses her off so she gets distracted by her emotions and it turns into a cluster. Finding a math curriculum that works for her has been a bitch. Right now, she's teaching herself algebra using a textbook and it seems to be working well for once.

Anyway, two paragraphs on math...can you tell I'm worried? Aaaaaaah.

I don't know if anyone remembers, but she has a neuromotor disorder (which because nothing can ever be simple is, of course, grossly underserved in the US) with an ADHD/anxiety comorbidity. The way Lyme went after her joints (and is apparently never leaving, and reminder that it was diagnosed at a major, nationally ranked medical center, not at some woo BS clinic) has magnified her issues with coordination. Soooo testing and choosing levels can get hairy.

Aside from placement testing, I've been working to gain access to the accommodations she'll need at school. It's all moving along. I've been super behind because of Covid and then whatever that whacky shit was my body did a couple weeks ago (aka suspected kidney stone). We'll be lucky if classes still have openings by the time we're finally able to register.

And last but not least, she's thriving in her volunteer work with the city this summer. She's learning a lot, manages her own schedule, and is taking initiative, growing her independence. 

Since we've established, as best we can, that her health stuff isn't imminently dangerous, I've been nudging her out of the nest as much as possible and letting her see what she's capable of. She gives me a lot of teen 'tude about it lol, but at the same time, she's volunteering more and more of her own volition. I'm delighted. Finally a thing goes well.