I'm Still Here

It's been a little over 2 years since I last posted and a couple people reached out - hoping all was well. So here is the long overdue update: 

- We now have a two year old baby boy!

- My chemo-sabe-baby is now a big 7 year old. 

- And I am still NED (7 years on 8/8). Praise the Lord! 

- These days I stress less about cancer recurrence and more about Covid-19. 

Thank you all for your continued prayers for us. It means the world to me. 

Another bump (not another lump)

This fall we started thinking about how we wanted to celebrate my 5 year "cancer-versary" in Summer 2018 -- maybe a big party? A trip? A present?

Well, in November we found out that God was going to give us the most amazing, surprising gift ever for my 5 year. Against all odds, I was pregnant! This was something I was told was unlikely to happen, given how hard it was to conceive Elise and how much chemo likely damaged my fertility.

The Bible says, "God is able to do immeasurably more than we ask or imagine." This baby is far, far beyond what I ever asked or imagined.

I am blessed beyond words to announce that baby boy Greer will be joining us in late July 2018.

24 weeks with the excited big sister! 

Baby boy! 

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.

Three Years!

Yesterday was the three-year anniversary of the day I found out I was cancer-free.

I don't even have words to describe what making it to this three year mark means to me.

From the week I first found out that I had TNBC, I set my sights on three years. "Three years", I'd think to myself, "I just need to make it three years". That's because apparently TNBC reoccurs most commonly in the first three years. Yes, there is still a chance of recurrence after three years. but the risk drops a lot at that point and continues to drop sharply.

(Note: now five years is my ultimate prize. I'm throwing one heck of a party in 2018 if God gets me to that date!)

I can't even begin to explain how blessed I feel to have made it to this date. God has truly done so much for me in these three years. So much so, that I recently recorded a video for my church, Grace Church San Diego, to share about what God did for me during the biggest trial of my life and what he continues to do for me. You can watch my video here. It's just 3 minutes long.

Speaking of blessings... my little miracle baby, my "chemo-sabe" is also now three! No more baby; she's 100% kid now. So smart, independent, funny, athletic, and sassy. She makes every day worth living.

August 2016

Our little family of three is healthy, happy, and whole. I feel more peace about life right now than I have in a very, very long time. I truly believe that God gave me that peace and continues to give me that peace. Jesus said "Peace I leave with you; My peace I give you." (John 14:27) and Paul said "I have learned to be content whatever the circumstances." Beyond eternal forgiveness and salvation, that's the biggest gift God can give us on this earth, peace and contentment. My prayer is that I could show others that peace through my story.

Note: that's not our dog. Elise just insisted that our friend's dog be in our photo. 

A letter to a newly diagnosed breast cancer survivor

Some friends at Cure Forward challenged me to write a letter with advice and encouragement for a newly diagnosed breast cancer patient, which I thought would be interesting and potentially helpful, so here it is...

 

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Dear newly diagnosed breast cancer survivor,

 

Did you know you are a survivor already? You are. From the moment you are diagnosed you’re a survivor and you will be for the rest of your life.

 

Here I sit, almost three years since I heard the worst words of my life, “you have cancer.” And thinking about those words still guts me. But honestly, that was the worst part, at least emotionally. Every day and week since then has been better. So if you’re in the lows of post-diagnosis, know that it WILL get better. 

 

When I heard those words I believed I was already one foot in the grave. I had no ability to imagine that I would be here three years later. But my advice is that even if you can’t imagine it, try to. And if you can’t, let others imagine your brighter, longer days ahead.

 

Medically, I encourage you understand all you can about your breast cancer. Not all are created equal. Understand your hormone receptor status, your stage, grade, lymph node involvement, and even onco-type. I didn’t have the opportunity to understand every specific of my cancer or information about clinical trials, because everything moved so fast post-diagnosis. But understating a bit about precision medicine, novel treatment options, and looking into companies that specialize in it, like Cure Forward, could help you a lot.

 

However, in understanding more about your breast cancer, stay away from of Dr. Google. He’s an evil doctor and he will only scare you. Get the facts you need (which can sometimes involve the internet), and they stay away from Google searches. The sad stories, message boards, and news stories will not help you. Remember, healthy people aren’t on the cancer chat boards. They are off living their lives. 

 

I also encourage you to get second opinion. I was diagnosed at one hospital, then got a second opinion another, and decided to do my treatment there. Call any friends you have in the medical field that can help you get a second opinion at another hospital. Sadly, not all oncologists, hospitals, and treatment plans are created equal.

 

Once you know all there is to know and you’ve sought medical opinions, then don’t hesitate to act. Get started on chemo or surgery ASAP. And push your doctors to get you started quickly. I feel like that was one of my keys to success. From my ultrasound/preliminary diagnosis to sitting in a chemo chair to get AC #1 it was 11 days. Time is of the essence, and don’t dilly dally thinking about not doing all the treatment your doctors recommend. You have to trust your doctors. So find one you love and trust them.

 

In case you want to know what the road ahead looks like, here are the three worst things (in my experience) about breast cancer treatment and survivorship:

1. Growing your hair back after chemo. I didn’t mind shaving my head when I started to lose it. I was in the zone of “this is what I have to do, and I’m a badass”. I didn’t mind wearing wigs – hey, sure made for an easy morning routine. But I absolutely hated the first six months after treatment when my hair was so short. I thought I looked unfeminine, like some kind of butch lesbian. I didn’t want short brown hair. I couldn’t wait for time to pass and my hair to be back in at least a “bob” style.  
2. A double mastectomy and tissue expanders. Not going to lie, a double mastectomy and the tissue expansions that I had to do quickly afterwards, is the worst pain I’ve experienced in my life. And I have a pretty high pain tolerance.  Oh, and that pain went on for ~6 weeks. It’s worse than any broken bone I’ve had (heck, I had a broken rib for 2 weeks and didn’t realize it!) and its way worse than childbirth. Remember, it’s terrible, but you’ll get through it and then it will be over.
3. That when treatment, ends the fear and trauma does not. Every cough you get, every ache or pain you have, every headache, everything leads to fear that it’s the cancer, back as stage IV. And this lasts for years, maybe even a lifetime. Faith in God and the passage of time has helped me cope, as well as trying to live life to its fullest, because no one really knows the number of days they have left. There is no “putting cancer behind you.” If you’re lucky, the worst will be behind you, but it will always be a part of you.

 

My heart goes out to you, the newly diagnosed survivor, because like I said at the beginning of my letter, it many ways the first days are the worst part. The heartache of hearing that you have cancer and the ambiguity of life after those words, is a pain that I wouldn’t wish on my (hypothetical) worst enemy. But you’ll get through this, and you will emerge stronger. Keep the faith.


Hugs and prayers,

Kirsten

 

RIP Adrienne

Adrienne was one of the first pregnant with cancer survivors who reached out to me after I was diagnosed. She had been diagnosed just a few months before me and was following the same road. Even in the young breast cancer world we were oddities -- pregnant, triple negative sub-type. She texted me pictures of her bald head and talked with me on the phone as I was making decisions about surgery.

Like me, after chemo her double mastectomy showed that she had a PCR (complete response = no living cancer left).

When she got her healthy baby and her PCR I thought "of course she did." She just seemed like one of those people who things worked just out for. Her beautiful smile, cheerful attitude, and strength could conquer the world. In my mind, she was just one of those people

But less than one year later she found out the cancer was back in her liver. Stage IV. Mets. "Incurable."

I couldn't believe it. I was floored. She was supposed to be untouchable. The quintessential survivor. So then I just imagined she would be the 1 out of 10,000 that beat mets.

Over the past 1.5 years I saw her health have ups and downs but recently more downs. And on Saturday, Adrienne went to be with Jesus.

She didn't "lose her battle" because she fought like hell and metastatic TNBC killed her.

My heart is broken. I miss her beautiful smile on my Facebook feed. I miss chatting with her in our Kick Ass Cancer Mamas group. I hurt so bad for her sweet chemo baby, Kellen who is just a month older than Elise. No two year old should have to be without their mama. I cry every time I think about him.

RIP Adrienne. Heaven gained one amazing girl this weekend. But you are dearly missed on earth.

Here is as touching news story about Adrienne -- her life and death.

And if Adrienne's story has touched you and your feel compelled to donate, you can donate to her non-profit, Adrienne's Army.

Healthy but Broken

Let me start at the end of the story and work my way back -- Today I'm healthy and don't have any cancer recurrence that I know of.

But I've been on a physical and emotional rollercoaster over the past six weeks. One that's still has me a bit shaken.

It started in late October when I tripped and fell in the stands at Qualcomm stadium and broke my rib. I spent two weeks in a lot of pain wondering if it was hurting so bad because of a bone metastasis. I started to go to a very dark place mentally. Finally I got a x-ray which showed a clean break and no evidence of metastatic disease to the bone. No cancer, just clumsy.

Then shortly after that x-ray I got a cold and then cough that got worse and worse. My oncologist listened to my right lung and said he was pretty sure that the cold plus the broken rib caused me to get walking pneumonia. Often when you have a broken rib you don't take deep breaths, so it makes you more susceptible to pneumonia. I took a good course of antibiotics and I'm no longer coughing or wheezing. Praise the Lord.

Also in the past six weeks I've seen on social media that THREE of the moms from my pregnant with breast cancer group have had a recurrence. They were all diagnosed in the months right before I was. But the one that hit me hardest is Jamie. She was diagnosed with TNBC six months before me, also while pregnant. We met on a milk sharing site (Eats on Feets) and she offered to talk to me on the phone since she'd just been though treatment. She was one of the first mamas that I talked to about the pregnant with cancer experience. She recently reached the 3 years NED mark, but then found out last month that her cancer is back in several places. My heart hurts so bad for her and her two small kids. If you're the praying type, please pray for her.

I want so badly to be "over" cancer, and move on with my life. So often I can trick myself into thinking I am, and then a recurrence scare sets me off and it becomes clear that cancer has left me broken and afraid. I was actually starting to feel so confident in my future that I was considering removing my IUD this month. But the past six weeks made me realize that I'm not ready to deal all the strange physical symptoms and stress that a pregnancy would bring (if I even could get pregnant). And maybe I never will be. I beginning to think more and more that I should just be happy with my one miracle baby and not tempt fate.