Tuesday, January 19, 2016

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
 

Monday, December 21, 2015

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.

Tuesday, December 15, 2015

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.

Monday, October 26, 2015

Tattoo Love

In October 2013, before I started radiation, the techs gave me four tattoos to mark the "field" that would be radiated 33 times. The only visible tattoo was on the middle left side of my chest (see picture/story here).

For two years I've looked at that dot and thought, "I should tattoo over this and turn it into something beautiful." Because that's what God does; He takes broken things and makes them beautiful.

So last week I did.

I decided to have it turned into a heart to symbolize the love that got me through cancer; the greatest love being from Jesus.


I just love how it turned out. Small but very, very meaningful.

It's a daily reminder of my one of my favorite verses from Romans. One that carried me though cancer treatment... "We also rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint, because God's LOVE has been poured into our HEARTS."

Yes.

Friday, August 14, 2015

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.

Tuesday, April 7, 2015

Two Years of Hair

I shaved my head a little over two years ago -- on Good Friday 2013. Good Friday and Easter have always been very special to me, but now they hold even more meaning.

Here is a picture comparison of me on three Easter Weekends. 2013, 2014, and 2015.



I feel so blessed to be here, and (bonus) with hair I actually like now!

And look, I can even do a pony tail now too!



If you had told me two years ago that it would be TWO FULL YEARS to have shoulder-length hair or to be able to put my hair up in a pony tail I think I would have been more depressed when it was falling out and I shaved it.

Praying that at next Easter I'll still be cancer free and my hair will be back to 2012 length.


Sunday, January 25, 2015

An Overdue Update

In the world of post-cancer blogging no news is generally good news. And I'm blessed to say with regards to my health I have no news. I'm doing my regular check ups, and since it's hard to prove a negative, all appears to be well (giant knock on wood).

I survived 2014 with basically nothing terrible happening -- which is the first year since 2009 that I can say that. I'd had a rough couple of years with pregnancy loss, unexplained infertility, and real estate woes before I got the knock out punch of cancer. Let's just say I'd be really happy for a peaceful, boring life from here on out.

It's interesting to watch how my cancer is less and less a part of my daily life. It's no longer the first thing I think of when I wake up in the morning, and the last thing I think of when I go to sleep. My hair looks like a normal shorter hair cut now, my boobs are "squishy" from my final implants, and I feel less anxious about everything. That's not to say I don't think about cancer a lot, because I did.  Random aches or pains scare me still. My back will hurt after a weekend of carrying around my 29 lb toddler and I'll wonder if the cancer is back in my bones. Then I remind myself that I've been carrying around my big baby and I'm not dying. Convincing myself that I am OK and I am going be OK has gotten easier with the passage of time.

I've started to share with people, when I tell my cancer story, more about what God did for me through the whole trial and how it built my faith like nothing could. Almost like I have more clarity about His presence in the storm now looking back. The power of prayer that I experienced during that time is something I'm still wrapping my head around.

My little chemo baby is almost 20 months old and occupies the vast majority of my free time and energy. She's such a blessing and a joy to have in our lives. She literally saved my life in more ways than one. I'm just so incredibly grateful for her.

Christmas 2014
Sadly, I continue to watch cancer rear it's terrible head all around me. I've watched a couple young breast cancer survivor moms from my on line support group relapse and die. My beloved oncologist found out he had Stage IV pancreatic cancer in June and died in December. Heartbreaking. And most recently my good friend's boyfriend was diagnosed with Leukemia. I pray that science keeps advancing to the point that soon cancer can be wiped out or just treated like any other non-fatal illness. I worry about Elise, but then I remind myself how far medicine and cancer research has come since I was a baby and have hope. If I had gotten TNBC 30 years ago I wouldn't be alive to talk about it almost two years later.

My prayer for 2015 is that this blog stays as boring as possible. Boring is good!

Thursday, October 16, 2014

Pink-tober Thoughts and Strength & Inspire Bracelets



It's officially "pink-tober" (aka breast cancer awareness month). It's taken me a few day to formulate my thoughts on it...

I have such a love-hate relationship with this month. On one hand I love to see a cause that I care so about much getting attention, and I love seeing people care, or pretend to care (*cough cough* NFL *cough*) about it. And I like that breast cancer is no longer a taboo topic like it once was. On the other hand all the "awareness" about breast cancer has done little to reduce the death rate from breast cancer, and it sickens me that many companies actually profiting off their pink products.

I guess if I could share three messages about "pink-tober" it would be this:

1) Ladies, check yourself and go to your doctor if you ever feel anything that resembles a lump. I used to be the the type that didn't want to "bug" my doctor. Luckily by the grace of God I was seeing my OB every four weeks because I was pregnant and she took the lump seriously. This is what you're supposed to be "aware of" from all this breast cancer awareness; check yourself and have a doctor check any lump you find.

2) When a young woman gets breast cancer young it's typically aggressive, fast growing, and deadly. So doctors throw all the treatment they have at them-- typically multiple rounds of chemo, mastectomy, and radiation. And even with all that sometimes it comes back as incurable stage IV. We don't really know why that happens. This is why we need more research and a real cure. Progress has been made but we have a long way to go to prevent, treat, and cure this killer of young women.

3) Be a smart consumer. Before you buy a bunch of pink products find out where money goes. Make sure it's going to research. We need a cure and research will be the way.
 

So, if you want to purchase a great project where the money actually goes to breast cancer and research, I am selling these awesome"Strength" and "Inspire" bracelets from Stella & Dot. 

www.stelladot.com/ts/w9y16


Stella & Dot is donating 100% of proceeds from these bracelets to the Noreen Fraser Foundation (a fantastic breast cancer charity). At just $39 each, they make great Christmas gifts or a fun little gift for yourself. They are only available during Breast Cancer Awareness Month and I am selling them until October 23.

Buy yours today using this link to access my Stella & Dot page: www.stelladot.com/ts/w9y16