Four More Years! Four More Years!

No, this isn't about politics. This is about celebrating my 4 years survivor-versary last month!

Only in my wildest dreams could I imagine seeing this date. Thank you Jesus!

4 years! 

Here's the deal -- When I was diagnosed I had a 36% chance of recurrence (remember recurrence almost always means mets, and mets almost always mean death, especially for TNBC).

At four years out I'm down to just a 4% chance of recurrence. Each year after 4 years until 8 years means 1% less chance of recurrence, until it's 0% chance at 8 years.

To illustrate this point, here is a chart that I lifted from a cancer study. This shows how most (i.e. 90%) of my recurrence risk is behind me.

I should cite the study, but I lost the URL. You can just google "TNBC survival curve".

So say it with me... four more years! Four more years!

Speaking of blessings, my little warrior/chemo baby is almost 4.5 years old. I'm LOVING this age with her so much. She's so smart, fun, and funny. I thank God every day for her and the time I've been able to spend with her.

Love my girl 

One thing people don't talk much about is the mental toll of cancer. I'm almost as proud of myself for overcoming the daily anxiety as I am about beating cancer.

As my risk has gone down, my anxiety has gone down with it. I don't subscribe EVERY little thing to cancer anymore -- but it's never too far from my mind. Recently, I've been doing pretty intense Orange Theory workouts and my shoulder started hurting (on my cancer, lymph node removal, radiation side). I whipped myself into a panic that it was mets. As the pain has subsided over the past few days, I'm thinking it was likely a muscle pull (my muscles are MUCH tighter on my left side thanks to mastectomy + radiation).

If I think about all my "scares" in the past four years, I realize there has been a lot. I decided I'd list them all here to show other survivors that all pains and illness are NOT necessarily cancer. Here they all are, none of these turned out to be cancer so far, and most resolved on their own:
- 2013: Sore mid back (likely from pregnancy)
- 2013: Cough that persisted (from a virus)
- 2013: Ringing in ear (maybe from chemo or stress)
- 2013: Blurry vision (from chemo likely)
- 2013: Dizziness (from chemo/rads/stress likely)
- 2013: Sore spot on skull (no idea, resolved on own)
- 2013: Shortness of breath (from my giant tissue expanders pushing on my chest cavity)
- 2014: Sore lymph node spot (residual pain from surgery)
- 2014: Lump on right prophylactic mastectomy foob (ultra-sounded and determined to be fatty scar tissue)
- 2014: Sore rib (probably a pulled muscle, but then I kept pressing on it and made it worse)
- 2014: Bad lower back (from carrying my big baby)
- 2014: Cough that lasted 3 weeks (from a winter virus)
- 2015: Neck pain (from sleeping funny)
- 2015: Broken rib (from falling at football game)
- 2015: Walking pneumonia (from the broken rib)
- 2016: Lump on cancer side foob (felt by onco and determined to be fatty tissue, dissolved over time)
- 2016: Sciatica and lower back pain (x-ray showed slight disk degeneration, also resolved over time, was likely from carrying my big toddler plus lots of long international airplane flights for work)
- 2017: Lump on back of neck (biopsied by derm and was a cyst, not skin mets)
- 2017: Sore shoulder/left back (likely a muscle pull from crazy workouts)

The good news is that my "scares" have decreased a lot over time. I pray that one day I won't even consider cancer as the cause of an ache or illness.

New Year

It's 2017! A year I kind of never thought I'd see.

Elise is 3.5 years old and at an age where she is finally making real, lasting memories. Since before she was born I think about how long I'd have to make it for her to have memories of me. Morbid? Yes, but true.

Fall 2016

 It's been 3.5 years since my mastectomy/ I'm rounding the bend to it being  years since I was diagnosed. And I'm finally sliding down the steeper part of this survival curve.

TNBC Study Results

Since I never really expected to live this long I've been doing a lot of soul searching recently about what I really want from life. Like what do I really want from my career? If I can have more kids do I really want them? What about adoption? What kind of house should we buy? I guess kind of normal 30-something questions about life.

I did make a decision about one thing! After growing my hair out for 3 years I decided to stop and leave it at collarbone length. I realized it was one of my favorite lengths (and I've not had them all) and it's easy to maintain, so I decided to stop there.

Christmas 2016

It's 2017. Prayers for another healthy year are always appreciated.

Two Years

Well, I'm now two years cancer-free. 8/8/13 was the miraculous, amazing day that I found out that God answered all my prayers.

When I was first diagnosed I had a hard time imagining or believing I'd get to see Elise wear 2T clothes, and here is she already wearing 3T clothes. My perfect, big, healthy girl. And I'm here to see it. God is so good.

Triple negative tends to recur most within the first three years from diagnosis and I'm now 2.5 years from diagnosis. I'm feeling dangerously close to the "safe zone". Like maybe in six months I can finally exhale the last bit of that breath I've been holding since March 1, 2013? It's just too good to believe.

If you know me, you know that I'd always been a big "planner"-- planning future vacations, planning my future children, planning my career moves, even planning for retirement. Once I found out that I had cancer I stopped doing all that. I felt like there was no sense planning if it could all blow up again at any moment. I wouldn't plan vacations that were more than a couple months away. But lately I've felt myself starting to plan again. Daring to believe that I'll be here in a year, or five, or twenty-five. Praying to God that somehow I won't "jinx" it all by planning. But also realizing that I know now that even if plans have to change, God is in those plans to.

Heck, I never even considered the possibility of more kids, and now I'm an 18 month long fertility study for young cancer survivors. And I've started to think that there's a remote possibility that we could have another kid. Unbelievable.

I don't have a good conclusion to this post, but I think Ecclesiastes can sum it up the best, "When life is good, enjoy it. But when life is hard, remember: God gives good times and hard times, and no one knows what tomorrow will bring." (7:14)

Amen.

Life after TNBC & a pCR

Sometimes I think I'm rockin' it as a Cancer Survivor and have full confidence that I'll be around to raise Elise and nag love my husband for many many more years to come.

Then sometimes I get an ache or pain and I'll spiral into fear and worry that cancer is back as stage IV. I know that despite my strong faith it's human to worry. Luckily each pain has gone away and I thank God every day for that.

But when I'm in the midst of worry I try to look for reasons I should be optimistic. The biggest one for me is that even though Triple Negative Breast Cancer (TNBC) has the worst prognosis of all breast cancer types, having a pCR (pathological complete response) after chemo yields an excellent prognosis. Like, look that this chart:

Source

Now that I'm one year out from surgery what's even more encouraging to me is that all "dips" in the graph for pCR/TNBC are before one year, which means that if I was going to have a reoccurrence I'd likely have it by now. Not 100%, but likely according to studies.

I know that statistics are just statistics and ultimately I'm an individual here by the grace of God. But sometimes that graph reassures me a little.  

And now, for fun, look how good my hair looks now...

Yay for a "Mom-Bob"!

On Sharing

A few people have written me and said something to the effect of "your Dad/Mom/Friend shared your blog with me, I hope that is OK." And I just wanted to say, YES that is more than OK, it's great! So if you feel compelled to share this blog with anyone, please do.

Why do I want to share my story via this blog? Three reasons:

1. First, it's way easier to direct people to the blog for the latest updates rather than trying to reach out to each person who's lovingly checking in on us individually. You can also find more information about my diagnosis, how to help, and answers to other questions about my plans so I don't have to repeat the same information to people over and over again. Not that I don't love talking to people, gchatting, emailing, etc. It just gets exhausting saying the same things over and over.
2. I want to raise awareness that sadly young women can and do get breast cancer, particularly Triple Negative Breast Cancer.
3. Finally, I believe in the power of prayer. The Bible says that whenever two or more are gathered in His name He is there. And I think that applies to the internet too. I'm keeping our prayer request page up to date and I plan to fill that page up with praises. And when I beat this thing it will be for God's glory and all the people out there who've been praying for us will be a part of that glory. 

Speaking of sharing, big thanks to the beautiful, positive, and inspiring Megan for praying for us and for sharing our story on her blog.

Keeping It Real about TNBC

Everyone keeps telling me how "strong" and "positive" I am, which I thank you for and I generally do think I'm strong and positive. But I don't want you think I'm an insane Pollyanna or that the type of breast cancer I have isn't totally shitty.

I've mentioned before that the type of breast cancer I have is called Triple Negative Breast Cancer (TNBC). This is not your Grandma's breast cancer. This type accounts for ~15% of all breast cancers and is most often seen in young women. It's not receptive to the blockbuster drugs that have increased survival rates for other types of breast cancer because it's not receptive to any hormones. And it's the most likely to metastasize (i.e. spread to other organs which basically means certain death). Researchers think there are several genetic components to it (like BRCA), many of which are not yet known, which is why more young women get it. You can read a lot more about TNBC here if you are interested. 

Sadly, when news stories report on TNBC they use terms like "deadliest" breast cancer and "poorer survival." So that's awesome. But that's because the hormone-positive breast cancers carry a survival rate in the 90%s and the survival rate for TNBC is more like 70%-80% depending on the studies you read. So you can see that although many people do survive TNBC, you're twice as likely to die of it than other types. One good website I found is called "positives about negative". It's shares realistic and positive news about TNBC research. Like one good thing about TNBC is that when it responds well to chemo (which often happens) the chances of disease-free survival go way up.

What's scaring the crap out of me right now, is that I've not have a PET/CT scan or MRI yet to look for metastasis because those involve radiation is which is not safe during pregnancy. So please keep praying that the cancer has not metastasized (e.g. spread) elsewhere. 

I don't mean this to sound depressing if it does, but I wanted to share this information so people don't think "oh poor Kirsten has to lose her hair and have a less-fun pregnancy, but beating this cancer is a slam-dunk". That said, I truly believe that if anyone can be in the 70-80% TNBC survivor stats, I will be. And I believe this...