6.20.2018

one foot in front of the other

Well! How was that for a whirlwind *almost* year? In so many ways, it flew by. And in many others, I feel like it's been ten years haha.

I just wanted to share a brief update kind of where things have been/are at for me. I sort of don't know where to start. First I just want to say much of this is therapeutic for me. I also genuinely want to share for those who are interested in what's going on. I know it has helped me a TON to learn more about people's stories as I've done this, and maybe someone will benefit from me sharing mine. Anyways.

So I guess we will just go back to when chemo finished. Mid February. I had about 6 weeks between chemo and surgery, and it was a pretty good time. My stinking body/hormones got pretty out of control real quick, which was a bummer. (Side note: breast cancer is either hormone positive or hormone negative, which basically means your hormones either fuel it, or don't play a role. Mine is hormone receptor positive, and as I've ridden that roller coaster this last year, holy crap. Hormones. Are. The. Devil.) Anyways, that isn't really relevant. I just didn't feel super because my body was working overtime to turn back on after chemo shut things off for about six months. Fun stuff.

So we were scheduled to have my surgery down in Arizona. I'm so grateful to my parents for opening their home for us to stay there while I recovered, and also weirdly grateful that my mom had great surgeons for her own surgery, because I ended up using them as well. It was a huge blessing to have done that down there. So the week before my surgery, I had about a million appointments to get my ducks in a row. One (or 5) of those were some scans to see where everything was at post-chemo. Just so my mastectomy surgeon knew what was going on. So we did those. Had my surgery. Surgery went well. They ended up having to do a full axillary dissection, which basically means they dug a bunch of crap, mostly lymph nodes, out of my armpit to see if I had any cancer left over after chemo. They removed 17 nodes, and 9 were positive with cancer still. Not great. At my post surgery follow up, we also discussed the fact that I still had positive nodes lighting up past my collar bone. Also not great. I think we were all pretty focused on the surgery recovery/etc, because the reality of what that meant didnt really catch up, to me at least, until we got back to Utah.

I was scheduled to start radiation about 6 weeks after my surgery. The week before, I went to meet with my oncologist for the first time in a while. It was a big meeting. We were going to discuss the pathology from my surgery/results of chemo/etc. While we knew that I obviously still had quite a bit of cancer sticking around, actually DISCUSSING it in a concrete meeting with the doctor felt a lot heavier.
My staging moved from 2B to 3C. Their words were ''we are disappointed with the results from chemotherapy." Not exactly what you want to hear after putting your body, family, and life through the ringer for the past 6 months.
Thankfully we still had radiation ahead, which should have done a lot to help. And I have a lot of hormone therapy, as well as several clinical trials ahead, to also help things.
And so we move forward with the next thing.

It's just a weird place to be at the "end" of treatment, you know? Like everyone feels like you should be super happy and excited. And instead we were told just a month ago that my cancer had literally gone as far as it could without being metastatic. And the fact that it didn't respond well just speaks to the nature of it: aggressive, resilient, etc. Then you add the genetic stuff to the equation, and it just feels super scary and absolutely unknown going forward. The last month has definitely been an exercise in positive psychology, to say the least. Christian and I are feeling a little better now. We are having many difficult conversations, and also doing our best to just live in the moment.
It's hard, and good.

Here's the thing.
The likelihood of a recurrence is high. The chance of it happening in the next 5 years is also high. I don't even want to think of what that could mean for us. And yet of course my head goes there. How can it not? It's a fine balance every day of being realistic, and also focusing on the positive.
Is that a potential for our future? Absolutely.
Does it mean I need to wallow and worry all day, every day? It could.
But I do NOT want to do that.
It's difficult. 
It's taking lots of therapy and coping techniques and emotion coaching and prayer and positive affirmations and deep breathing and caffeine. Hahaha. But the thing about it is, like with ANY trial, this is just the new normal. And it will get a little easier as we keep practicing and LIVING.
At least that's what my therapist keeps telling me ;)




The biggest thing I have come away with over the last month is this:
I have faith in God's plan for all of us. For myself and my family. As of now, it doesn't look like ANYTHING I would have chosen. And some day down the road, we may feel even more that way. It makes me sad and frustrated. But those feelings ease a little bit when I remember that I, that WE, are absolutely in His hands. I know more than I know anything that HE LOVES US.
So very much.
We are His children.
He WILL NOT abandon us.
He sent His Son to die for us so that we do not have to walk these lonely roads alone.
And so that we may live with the people we love for FOREVER.
I have felt His guiding hand and loving embrace so many times over the last year. I have felt the spirit whisper to me that even though so much of this doesn't make sense, SO MUCH of it, Heavenly Father is at the helm. Many days, it has taken intense digging. Deep searching. I have had to do my part, because I can't always see His outstretched hand through the noise of the world, through my worries, through the haze of mortality. But when I find it, the peace is there. And I am reminded that somehow, it will all be made right and make sense some day.
I know this to be true for all of us.
Whatever we are going through.

As the storm clouds have loomed, and thickened in some ways, I have felt more and more like a child clinging to the hand of a parent. This has all surpassed my understanding, and the more I look around at the storm, and take the focus off of Him and my Savior, the more scary it all feels. And so this is what I am *trying* to choose, every day.
I am choosing to focus on the hand that I am holding.
The hand of a loving Heavenly Father.
Because He's got this. 

9.08.2017

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.

9.06.2017

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. 

12.30.2016

a very Christmassy break pt.1

Can this blog just be my journal from now on? There is so much I want to write about, but it takes a lot longer to say everything with the old pen and paper! Anyways, that's basically all this post is. One big journal entry of memories for our little family, complete with sub-par phone pics haha, because the last week has been AWESOME.


From January to April, Christian's schedule is pretty insane. We learned that the hard way last year, so we went in to this break knowing that we needed to stock up on family time so that we have a well to draw from for the next 4 months haha. It's the worst, but what can you do? Anyways, we started to festivities last Friday when we went out and celebrated 5 years since getting engaged. Holy cow time flies! And yet when I look at how much has happened since then, we feel like "it's only been 5 years?" haha. We had a lot of fun together that night. We finally went to Current, a great seafood place downtown that Christian has been dying to take me since he went there for work last year. It did not disappoint! We shared a plate of mussels (it sounded horrible but they were INSANE. In the best way), and enjoyed our respective dishes: fish and chips for her, and shrimp and grits for him. It was so awesome to be at a nice restaurant with just Christian. Of course we talked about the kids (we can't help it!), but we also discussed future plans and dreams, the holidays, new family traditions and just life. I'm still just so head over heels for that man. Every time we do things like that together, it just further cements my feelings for him. We finished the night with a Target run and some last minute Christmas shopping haha. I tried so hard to have it all done but alas. Maybe next year :) All in all, it was a super fun way to start a week of having dad all to ourselves!

Gotta have the Christmas Eve jammies shot!

Christmas Eve day is a bit of a blur. I think we just cleaned a ton, did some wrapping, and prepped for our dinner that evening: the first annual Carter family Christmas Eve Fiesta! Christian made and perfected his horchata recipe, I made tacos and coconut rice and of course we had chips and salsa. Nash couldn't even handle how great that was haha. The dinner turned out great! Christian had put together a fun playlist (mostly we just listened to "Donde Esta Santa Claus" by Guster. Give it a listen! It's actually a great song, but I swear I don't think I will ever get that out of my head now haha), and even though we were all pooped by the night's end, it was super fun. After we put the kids to bed, we wrapped presents for each other and finished watching the Grinch and probably like 3 episodes of Suits haha. We can't quit that show, even with all the Christmas movies in the world at our fingertips! Then we went to bed, because next was CHRISTMAS DAAAYYY!

12.16.2016

2016


We loved the thought of getting Christmas cards out this year, but with a new baby, family pictures was about as much as we could muster haha. Oh well, maybe next year!
For now, here's an update on things this past year. Obviously the biggest event was the arrival of little sis! But here are some little tid bits about each family member:


Christian: Man I could just gush and gush about our cute dad and my sweet husband! So I think I just might ;) Christian has been a champ this year. Between a rough pregnancy and huge adjustment to a new baby, things haven't been super easy, but he's been our rock through all of it. He's been doing amazing things at work, and receiving lots of great recognition for it. I honestly couldn't be more proud of him. He works in a very high stress, high pressure industry, and he just excels. It's a huge blessing for our family! He's also been serving in the bishopric in our ward for the last 6 months, and while it's added an extra dose of crazy to everything, it's also been a really neat experience for him. Our bishop is one in a million, and it's great to have that influence in our lives. We are feeling very grateful that the church time is changing next year and that he hopefully wont be in meetings all day anymore haha. Christian keeps us all happy and laughing, and the best time of the day is by far the second he walks in the door. Thanks for taking such great care of us dad, we love you a ton!


Brooke: Well, I grew and birthed a human. Haha! But seriously, it was so huge to get Faye here! It's been quite the experience adjusting to having two kids, but I honestly love it so much. This definitely feels like the spot our family needs to be in right now, and while it's difficult, it's so FUN being the mom to our two babies. Not much else is going on for me honestly. Just getting my head above water as we've passed the 6 month mark. Faye can go to the daycare now, so I'm finally making it back to the gym which is breathing new life into my soul :) I'm spending a little free time with my fellow mom friends, and looking forward to next year when there aren't so many huge things going on haha.


Nash: Oh this boy! He's such a sweet, fun blessing to our family. Nash has grown up so much this year. He's in the stage right now where his language is just exploding every single day. He adds "mom" to the end of everything he says: "yes mom", "no mom", "what happened mom" etc. It's the greatest. He's obsessed with Mustangs (I think we own every generation of hotwheels mustang, and then some. This is not a joke), LOVES eating clementines, talks all day long, thinks his baby Faye is the funniest thing ever, loves to be tickled, has the most amazing memory, still only calls dad "Christian", and brings so much peace to our home (usually haha). We feel so lucky to be his mom and Christian dad!


Baby Faye: Our little sissy girl, as we fondly call her. She has the sweetest disposition. She's happiest when she can be close to her mom, dad, and brother. Does NOT like being left with other people haha. Shes quick to smile but keeps her laughs to herself (so far, Nash gets the biggest giggles from her! Usually when they are in the car together). Almost sitting, eating all kinds of baby food, looking like she will have a head of strawberry hair, and making us so so happy. She's the piece to our family we didn't know we were missing,a and we love her so much!


And there you have it. This year has felt totally crazy, and very mellow all at the same time. I think that's just having young kids, right? Haha. As of now, we will be here in Salt Lake for at least another year, just loving this beautiful city we are lucky to call home. If you are ever in town, come visit! We'd love to have you over to babysit...... Er, I mean for dinner.
Yeah.
That's what I meant.
Dinner ;)

Merry Christmas from the Carters!

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