who the heck are Li and Fraumeni?

So the first appointment with my oncologist was great. And really interesting.
Let's just dive right in, shall we?

At the very beginning, she was explaining how 90-95% of breast cancer is just random, can show up in anyone. The other 5-10% is genetic, which is where the BRCA1 and 2 genes come in to play. Not even going to try and explain that haha, just look it up if you want to know more.

THEN she went on to explain that there is another gene that can come in to play, TP53, which you can see with early-onset cancers. With my sister having had the cancer she did, and both my mom and I having early-onset breast cancer, the oncologist said she was thinking it was pretty likely I had this gene mutation.

Lots of jumbled medical talk ahead, but basically this: It's called Li-Fraumeni syndrome, and if you have it, it essentially means you are at HIGH risk for a lot of different cancers (brain, bone, adrenocortical, breast, colon, soft tissue sarcomas...), and the kicker is that they frequently show up in childhood and young adulthood. It works this way because of the gene mutation. TP53 is a tumor-suppressing gene, so if they are working normal, they do their job to stop abnormal cell growth. However, if you have the mutation, you essentially have a 99% lifetime risk of developing one (recurring, and often more than one) of these cancers. To put that in perspective, a woman with this gene mutation is 100 times more likely to get breast cancer than the average Jo, or Joanna should I say. Har har har.
Totally get that this might just be information overload, but here are some links if you want to read more:

https://en.wikipedia.org/wiki/Li%E2%80%93Fraumeni_syndrome
https://www.lfsassociation.org/what-is-lfs/

So that's what my oncologist said she thought was going on. So I had blood drawn that day and then we had to wait 2-3 weeks to find out if I had the mutation or not. From there, other tests could be done, including ones for the kids, which is terrifying of course.

So anyways, about a week ago, my test came back and we were told I do in fact have the mutated gene. That's a firm Li-Fraumeni diagnosis. Talk about a punch in the gut. It's kind of what we were expecting, but it's still a shocking, overwhelming, and completely life-changing thing to find out. So the kids have been tested and now we are just waiting to hear. Talk about stress upon stress.

One silver lining in all of this is that since we were already doing IVF anyways, there are genetic tests that can be done on the embryos to see which ones have the mutation and which ones don't. There is a 50/50 chance that our children would get this from me, which of course has massive implications, including for any kids we decide to have moving forward. Certainly not everyone would make that decision, but we are choosing to move forward and do so, and we feel so grateful that however our family ends up growing in the future, it can be in the safest possible way.

It's such a strange thing getting news like this. With the pervasive sadness in our world, I keep seeing lots positive messages shared on social media, which I really appreciate. I can't help but laugh when I read some of them though. Many that I have seen start with "If you and your family are happy and healthy, then you have all you need...." blah blah blah. It just makes me stop and just feel so shocked at all of this. Like, well I'm not healthy so where does that leave me? This will be something in the back of our minds for the rest of my life. And possibly for our children as well. Knowing that cancer is now, and will always and FOREVER be a huge risk for us is so so overwhelming. It's not often in life that we get a little "heads up" on our trials like this, and in some ways it's awful. It's awful feeling like "Well, we may get rid of this now, but who knows when it's going to show up again!". The whole "this isn't going to last forever" kind of applies, but also really doesn't. You know. Just kind of depressing.
More than kind of haha.

BUT.
It's also giving me the chance to really dig deep and think "Okay. This is something I KNOW I'm going to deal with for forever. And I can wallow in it, or I can do the best with what we've been given and find happiness and joy in spite of it all. And THROUGH it all."
And isn't that what all of us are trying to do anyways? This is not specific to just me or my family or our cancer problem haha. ALL OF US come up against really difficult things in life, and we can choose the attitude we have through it all. It's not easy, but it IS in our control!

More than anything, I don't want to let this define me. I DO want to let this make me more empathetic and compassionate and more intentional in the way I live my life. And yes. There have been a lot of sucky days so far, and I'm sure there will be more to come. But I really have so much faith in God and His plan for us, and somehow, I know this will all make sense one day. Until then, I'm just going to do my best and hope it's enough.