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.

the C word

I feel like with any huge life event, good or bad, there is a lot of opportunity for growth. And wow, this is HUGE. I usually see more growth in myself when I write stuff down, so here we go. Because there's no way I'm going through this and hopefully not coming out of it a little better in the end! I hope!

So.

The beginning of my cancer journey. I keep saying this, but I CAN'T BELIEVE THIS IS REAL. It's just crazy.

So a little background, because we keep getting this question: how did we find this? 

So, I stopped nursing Faye back like the end of March. Once I started losing "volume" if you will, I noticed a lump pretty immediately. But of course wasn't worried because I thought, "oh it's probably just a clogged duct" or something nursing related. Because I wasn't worried, I really wasn't keeping track of size or anything. I honestly just thought it would go away. Anyways, fast forward a few months and it definitely wasn't shrinking or anything, and it had started to feel tender and such. Still wasn't feeling super worried, but I did feel like it was strange that it hadn't gone away. Just randomly one day I decided to call my OBGYN about it, seriously still not worried, and they told me they wanted an ultrasound and to schedule an appointment with a surgeon. It was at that point I thought "Oh crap. Could this actually be something?"

***A little sidenote: A lot of you may know, and many of you not, this is not the first time cancer has struck in my immediate family. My mom fought breast cancer, twice, a little over ten years ago. And we lost my sister to adrenocortical carcinoma when I was 6. This is part of the reason why this has rocked our world so hard. We all feel like "How is this POSSIBLE? How could this be happening for the third time?!" It's literally 50% of us now. It's just crazy***

So I got on the schedule at the Huntsman for an ultrasound, but it was over 2 weeks away. After everything I started reading online (I KNOW I KNOW, dr google isn't the best. But in this case, it's actually helped me a lot), I was feeling super anxious about getting in sooner. Thankfully I got rescheduled so that worked out, and on July 27, we were up at a clinic in Farmington for the ultrasound. Pretty immediately, the tech felt like something didn't look right. She could see lots of calcifications, which I've since learned can be a big indicator of cancer. The head radiologist came in and took a look, and found a lymph node that looked concerning, so right there they decided they needed to do a mammogram. Same story. Pretty immediately they could tell something was not right. They showed us the images, and we could easily see it too. It's crazy how big this mass is. It's basically the length of my entire breast, about 10cm. To put that in perspective, a stage 4 (the highest stage) tumor only has to be 5cm. CUE FREAKOUT. Because of what they could see on the mammo, they wanted to do a biopsy right then too. Huge weird needles and some strange pain in my armpit, but nothing terrible. The doctor was so kind. She kept saying "Man I really wish I could tell you I wasn't concerned about this, but I really am." I told her at the end "I'm just shocked you aren't telling me this isn't nursing related. I would have bet my life that's how this was going to go." She surprised me when she said "Even with your family history, that's absolutely what I was thinking initially too. I'm sorry that's not what's ended up happening." I'm so so grateful for those nice women. In hindsight, I'm sure they knew this was more serious than they were letting on because they were SO KIND to us. I'm forever grateful for that. 

So we left the office basically like "What the hell? Did we just discover that I have CANCER?!" The next 7 days were the absolute longest in my whole friggin life. Like WHY DO YOU HAVE TO WAIT SO LONG TO HEAR WHETHER OR NOT YOU HAVE CANCER?! My parents were so kind and drove up from Arizona to keep us company while we waited for the news. There's NO way I would have been able to survive that week if they hadn't been here. I was seriously a wreck those first few days. Couldn't hardly eat or sleep, the works. Waiting to find out if you have cancer or not is about as terrible as it sounds. And they completely saved us. Another thing I will be forever grateful for. So anyways, I think we were all just preparing ourselves for the bad news because that's really what I sounded like was coming. Which I am also grateful for, because mentally preparing for that was actually pretty helpful. 

So then I got the call that Wednesday morning, August 2. 

Yep. Cancer indeed. 

And boy did the ball start rolling then. Lots of phone calls to friends and family, and my phone started ringing like crazy with calls from the doctor getting more things scheduled. First on the docket was an appointment with my surgeon the following day. THAT APPOINTMENT WAS SO BOMB. We could really feel everyone's prayers for us that day. Our surgeon, Dr. Matsen, is fantastic. We've come to find out she's a great explainer, which is probably why we were at the hospital for literally 5 hours that day haha. We also met with a genetic counselor, all the nurses, a research.... lady.... haha, and a social worker. So many awesome people helping us out. Getting more information (staging, my likely treatment plan, tumor size, etc) was great. The unknown is absolutely the worst part of all of this.

SO.

Stage 2B ductal invasive carcinoma. Stage 2B because it's spread to the one lymph node, that they know of, and the tumor is larger than 2cm. Hormone receptor positive, meaning estrogen is especially feeding the tumor's growth. They actually want me to do chemo first, which is not what we expected. The mass is large enough, as is the lymph node, that they want to do chemo and shrink everything a little bit first so the surgery can be less invasive. Before we can start chemo however, we have to do fertility preservation, which is essentially IVF without a pregnancy at the end. So we have been doing that for about two weeks, and then we will hopefully have 2-5 embryos to freeze at the end. It's so hard to wrap me head around how much that has changed for our family the last month. Everything we've thought about how we are going to keep having children is kind of nonexistent now. Crazy. So then once we have our embryos, I can start chemo. Which shockingly, I'm actually looking forward to. Not looking forward to chemo itself, but it's been so hard feeling panicked and stressed about all of this, but pretty much every day NOTHING is happening to fix the problem. Just lots of appointments and more stress being added.

So yay for chemo haha.

And that's kind of where we are now. Thanks for bearing with me as I share all of this. It's as much a coping mechanism for me as it is a desire to stay connected. Stay tuned for some more big things. Unfortunately lots more has happened in the last few weeks, and it's just way too much to explain in this same post.