update!

It's the first day of spring!
It's international day of happiness!
It's also one year since my bilateral mastectomy, and it's about time for an update!
Much less fun than the first two, I will say ;)

Bet you weren't ready for this picture! Good times!

I can't believe it's been that long, and also that it's only been A YEAR?!
I won't lie to you. It's been a bit of an armpit.

Here's a refresher:  http://brookeshowalter.blogspot.com/2018/06/one-foot-in-front-of-other.html


So, life just got really real after my surgery, and it's just stayed pretty intense the whole year since. Lots of juxtapositions that I just have to laugh at.
Christian's job has been such a blessing, but it's also been out of control busy and stressful.
Parenting little little ones while doing all this is a sweet joy and distraction, but it also kills me daily because I'm just so freaking tired.
We were SO BLESSED when I got put on the clinical trial drug back in July, and I also hate it so much because it makes me feel like death. And I still have a year and a half before I'm done
*cue tears* haha.
(There's a whole post forthcoming where I pretty much just complain about the way I feel so GET READY. It kind of feels like throw up at this point: maybe if I just get it out of my system, I will feel a little better haha. And I feel like I want to throw up all the time anyway, so if I can't REAL vomit, at least I can WORD vomit!'
I'm the funniest.
Anyways, I digress...)

The final juxtaposition in life right now is this:
About two weeks ago I had my yearly scans
(this is for this Li Fraumeni syndrome. Whether or not I currently have cancer, I will go in for scans every year, for the rest of my life. Same deal for my sweet mom. We need to sync our scans so that we can pop a Valium and make a fun mother-daughter date out of it ha!).
These were HUGE, because they were basically giving us a big picture look at how radiation worked, and also my medications, including this big clinical trial drug.

I still hesitate to even say this because I can't wrap my head around it....

My scans came back CLEAN.

My oncologist was officially able to say I am NED (no evidence of disease).
And to go from where I was a year ago to this, is just kind of shocking honestly. A miracle.
The biggest thing is it just gave us the most precious blessing: TIME. 
Which is what has been weighing so heavy on us since my surgery last year.
Going into these scans, this is where our heads were at:
Were we going to find out I still had some cancer in my lymph nodes, or somewhere else?
And if that was the case, what did that mean?
Would this cancer grow more and more resilient, and then spread?
Would I be metastatic within the next few years?
Or next five?
Would I have ten years to live?
More?
Less?
It's a terrible thought spiral to go down, and yet almost impossible not to.
Again, it's been a really, really hard place to be.

So. There you go!

If I seem less excited than you'd expect, it's because I'm still in shock, frankly. And have spent this entire last year with my head not even on the possibility of a clean scan.
I AM excited, I totally promise!
It's just gonna take me a second to adjust ha.

I will say, my mind and anxiety feels much more at ease than they have been. Everything has felt so high pressure, like YOU MUST BE TAKING THE ABSOLUTE BEST CARE OF YOURSELF BECAUSE WHAT IF THE CANCER IS STILL AROUND SO YOU MUST EAT WELL AND SLEEP AND EXERCISE AND KALE AND CELERY JUICE AND ALSO SPEND ALL THE TIME WITH YOUR KIDS AND HUSBAND AND ENJOY LIFE AND DON'T WASTE A SINGLE MOMENT BECAUSE WHAT IF YOUR SCANS ARE BAD AND YOU DON'T HAVE LONG TO LIVE?!
How's that for an internal dialogue?! Ha!
So yeah, one shift I've definitely felt since my scans is all that mental noise has quieted down. I can just relaaaaaaax a bit. Which of course, I'm so so grateful for.

So now a little info. When a cancer patient is NED, it does not necessarily mean they are cancer free. They are careful not to use the term "cancer-free" these days actually. Because of course there may be some tiny little cancer cells left over that you just can't see.
This is where I feel so grateful that I had my ovaries removed (did you know I did that? Good times. Gotta keep the fun train going and the estrogen outta here!) and to be on medications. One will likely last for the next ten years. That can do so much for any pesky little left-over cells!
I'm super super grateful for that.

Like I said, I feel like these scans gave me the biggest and best thing: TIME. 

Not a cure.
Just more time (hopefully SO SOOOOO much more time!!) before things possibly get hairy again.
(Or less hairy... because, chemo. See what I did there? lololololol I can go all day!)

And I hear you! Like "Sheesh lady, you had great scans! Can't you take a break and stop complaining for a minute?!"
Well joke's on you because that ain't happening. Yet ;)
One final thing. This is taken from an article titled "Understanding No Evidence Of Disease".

"The term "no evidence of disease" (NED) is often used with cancer when there is no physical evidence of the disease on examination or imaging tests after treatment. The term means the same thing as complete remission or complete response. NED does not, however, mean that a cancer is cured, and, with most cancers, there is a chance that the cancer could recur or relapse at a later date. Certainly, being NED, as the term is often used, is very positive, and means that the treatments used were effective, if not just temporarily. Since the recurrence of cancer, and metastases, are responsible for the majority of cancer deaths, there is currently a lot of research focusing on how to keep a cancer NED.
It's important to note that people with cancer who are NED need tremendous support. Not only do many people who have achieved a complete remission need to cope with the fear of recurrence and "survivor guilt," but late effects of cancer treatment can sometimes significantly reduce quality of life."

Those late effects of cancer treatment reducing quality of life is EXACTLY where I'm at right now. Hence the forthcoming post that's basically just about how garbage I feel haha. You've been warned.

So. I feel crappy, but I also feel so so so so grateful. 
The line from the Jack's Mannequin song has just kept going through my head,
(Fitting, since my boy Andrew is himself a cancer fighter and survivor)

"You can breathe. You can breathe now."

And truly I feel like I can. We've been holding our breaths for the last solid year, and can finally..... EXHALE.

i love you and i like you

Christian and I met ten years ago today.
Since the moment I laid eyes on him, we have been magnetized to one another. Which is funny, because I found out a few years ago that I don't even remember meeting him for the first time.

It was our ward opening social at Aspen Grove, freshman year, at BYU. My girlfriends Nicole, Kaylie and I had hopped in the back of the car of our friend Brian's car. Apparently, Christian saw the caravan of ladies and immediately got in the drivers seat. None of us have any memory of this happening, which is no surprise since the three of us spent approximately 95% of our time that year being complete idiots and loving every second of it.

(To anyone who may have definitely witnessed our antics... sorrynotsorry. That was the funnest year of my life.)

(Also a testament to mine and Christian's love is the fact that he stuck around while he had, quite literally, a front row seat to the idiocy. Little did I know, he would be an equal partner in ridiculousness, which I am convinced is a cementing factor in our relationship.)

Anyways, HE remembers thinking we were cute and a little crazy.
I remember seeing him for the first time that following Sunday.
It was our ward prayer (Oh BYU), and from across the room, I noticed a cute blond boy, wearing glasses, moccasins, and a Jimmy Eat World shirt.

That was all it took.

We were instantly friends. We bonded over a mutual love of the same music, and I helped him ask one of the three of us inseperable idiots, Kaylie, to homecoming, while Nicole and I went to the Wilk, bought foot long meatball subs, ice cream, and went to the library to study.
I am still dying laughing at the memory. Who eats a footlong meatball sub?!?!
I must have been in love already, and just not known it, to have been driven to that.

We started hanging out. He thought I made a cute grandma when that was my costume of choice for Halloween (I mean, we were OBVIOUSLY trying real hard to impress those boys!). I had no idea what his V for Vendetta/Hansel from Zoolander mashup was about, but I obviously liked it enough.
Our first picture was born.

We decided to take our religion class together the following semester. It was there that things really started to blossom.

He would always get there before me. He had an early morning custodial job that allowed him ample time in the morning. I preferred to stay in bed until the last minute, which left me frequently arriving moments before class would start.
I would later find out that he would always be so happy to watch my walk into class.
He would later find out that I still like to stay in bed until the last possible second.
He used to take my phone during class (because of course we would always sit by each other), and leave random reminders. Towards the end of the semester, I was looking through my calendar and noticed a certain reminder he had created.

It said "Christian leaves today. Last chance."

I was in the car with my girlfriends, on our way home from general conference, when I read this. Immediately I was in a frenzy. What did this mean?!
It was in that moment that I realized I liked this boy way more than I thought.
(Flash back a few months. One day my mom and I were talking, and she asked if there was one boy from my ward that I would be interested in, who? No hesitation, I answered "Christian".
Obviously, the universe was listening.)

After much pressing and prodding (re: PEER PRESSURE) from my girls, I decided to text him and address the reminder I had found.
Ahhh. 21st century romance.
I don't remember exactly how our conversation went, but one thing was clear.
We liked each other.
We REALLY liked each other.
We like, LIKE LIKED each other.

There were mere weeks left in the semester, and we ate them up. After several failed attempts at dates (a movie in the library, where a few unknowing friends awkwardly tagged along, followed by another attempt at watching a movie in the common area of my dorm, where I'm pretty sure we got busted, because COPYRIGHT LAWS!), we finally secured a romantic night together, studying for our Book of Mormon exam.
LOL.

As things go, the night was fantastic. Not only did we both later slay our exams (you CAN study and flirt at the same time!), but we ended the night by sharing yet again, our epic love of the same music. This has been a common theme in our marriage, and one that I love so, so much.

The last night that we were both in Provo was......
....well.
It was magic.

We were playing cards in my common room.
(This is all I can think to call it, even though that's absolutely NOT it's name.
I can pretend BYU is Hogwarts, right?!)
Another girl who also had a crush on him, kept trying to chase him around, literally, while they were kicking each other? I don't know, freshman are weird.

I was getting fed up with the nonsense, because I AM THE ONLY ONE ALLOWED TO BE A CRAZY IDIOT HERE, so we moved ourselves outside.

I bought myself an orange juice from the vending machine.
Oh how I loved that orange juice.
We sat and talked about nothing, and everything, for hours.
Things were showing no signs of slowing down, so we decided to head out on a walk. It was about midnight at this point, and as the Little Mermaid said:
"But who caaaares? No big deeeeaaal! I want moooooooorrreeee!"

We walked over literally every part of BYU.
2am.
3am.
We were now trolling the perimeter of the entire campus, and I kept thinking to myself "I wish he would just hold my hand!"
And here you thought that late hour meant nothing wholesome could be going on.
That's right!
There wasn't even hand holding, folks!
When we got to the northwestern corner, right by the Brigham Young University sign, it hit me.
"I think I love this boy."

On the final leg of our walk, the romance came to a screeching halt when I was hit in the head with a water balloon, thrown by some crazies driving past us.
I am literally laughing out loud as I type.
You can't make this stuff up.
Christian was super frustrated, like a true gentleman.
And it was about 4am at this point, so we figured we'd stop at:
"We stayed out ALMOST all night together!",
as opposed to "We stayed out ALL night together!"
Because the latter just sounds a little more scandalous, right?

The following morning, we ate breakfast together. He helped me haul a trash bag of clothes to my car. And then we said goodbye for the last time in two years, as he was preparing for his mission to Uruguay 6 weeks later.
True to ourselves, there was not even a kiss goodbye.
I left for my home in Mesa, Arizona that afternoon.

The next day, Christian was heading home himself.
Melbourne, Florida.

As we hadn't really left things "anywhere", I had no idea what to expect for the next six weeks.
Imagine my surprise when I received a phone call from HIM! At the airport! He was leaving and just wanted to say "hi."
It was a phone call that kind of changed everything.
We talked for hours, almost every day after that.
The future.
Marriage.
Everything.

About two weeks before he was slated to leave, I made the decision to cut back on communication. After all, "he needed to be focused and prepared. Not fawning over some girl."
#righteous.
(At one point during that two week period, I received flowers from him on the same day that he took another girl on a date to the temple. I also had swine flu and was completely delirious with sickness. It was an obviously weird bump that we just pretend didn't happen ha)

And then began his two year mission.
We wrote very consistently. I got a letter from him about every two months, and it was joyous every time. I dated quite a bit, but no one could measure up to the bar he had set. Very near the end of his time in Uruguay, I had a close call and was essentially engaged for a hot second.
Guess I had lost sight of that bar he set, huh?
Thankfully I skirted out of that disaster waiting to happen, and a few months later HE WAS HOME.

A few more weeks of talking on the phone, and we were finally FINALLY reunited when fall semester at BYU started.
I swore for about a month that I was going to break up with him. It was just too weird and too different (because #freshoffthemish).
The major turning point happened one Saturday when we agreed to hike Mount Timpanogos together. It was as we ascended that massive mountain, at a shockingly fast pace, breathlessly talking in the uninhibited way that nature often begets, I realized I had fallen in love with him. All over again.

And here we are. Ten amazing years later.

Serendipitously, Jimmy Eat World will be in Salt Lake City next week.
We will go, and bask in the music that brought us together.
The ground we've covered. The letters we've written, the babies we've made, the laughter we've shared, the tears we've cried, the storms we've battled, the life we keep creating.
It's been the best ten years of my life.

"No one else will have me like you do.
No one else will have me, only you."

Only you, Christian Carter.
Forever and always.

i feel it in my fingers

The urge to write has been strong lately.
Actually, it feels more like a call than an urge. The call to record things for my family, to give my children a connection to their mother, and frankly to have a creative outlet.
(When you are so financially strapped, because #medicalbills, it helps when your creative outlet is also free ha!)

I've decided for the sake of my own sanity to compartmentalize my writing. Having a public blog feels so 2009, but also so indulgent. It's annoying. But honestly, typing is a much easier way for me write now.  I've had some issues, what I thought was carpal tunnel, for about 6 years, but it's gotten so much worse since my surgery. And I don't really want to have a bunch of random word documents... which brings me here. So I have a journal where I can physically write my deepest darkest feelings (because not EVERYTHING needs to be on the internet!), a scripture journal, the memento app where I can record small family tidbits and pictures that I don't want to post to instagram, but aren't worth the effort of a blogpost, but I still want somewhere (say that ten times fast), mom's one line a day journal, my planner, and this trusty old blog where I can write longer, more involved stories and really put the effort into my writing.
Whew.
I think I've got all the bases covered! ;)

So if you're here, thanks. I've so loved the friendships I've made with people who have found my blog, or I've found theirs. As a lover of people and reading, it's the best of both worlds for me.
And if no one is here and I'm just sending my words out into the universe, then thank you universe.
I have arrived, and I am just happy to be here.
This is something I've really felt strongly about, so prepare for a deep dive, starting....
Now.

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. 

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.