The Hope of Christmas

Last week was a difficult one for me, but it was also difficult for several of my friends. I have two good friends going through similar cancer situations- one with metastatic breast cancer and a one year old and another with a rare/aggressive form of ovarian cancer with two small children. Both received difficult news last week and continue to have tough times controlling the cancers, being in the hospital with infections/flu, and other random-not-so-helpful stuff like breaking a foot and another getting in a car accident. Please pray for those two families. Also last week, my best friend of a million years and the main person I go to for support outside of my family, lost a baby on her third IVF cycle. Please be in prayer for that sister.

It feels like there is so much hurt in the world. Maybe sad stories attract other sad stories. Brad says our situation has made him so much more sensitive to the needs and hurts of others during prayer request time at church; whereas we would always pray well-intentioned yet clinically detached prayers for people in pain, lately we have both been deeply moved by other's stories of strained relationships, lost babies, and sickness.  Maybe the increased sensitivity is a result of God drawing close to us through our own trial.

I don't know how I went the first thirty years of my life so oblivious to the extreme pain that exists out in the world. It is a symptom of how broken this world really is and how it was never meant to be our forever home. Even a non-religious person will tell you a young pregnant mother should never receive the cancer diagnosis I received last summer. Something deep inside us rails against it - a sensibility God installed in everyone that says, "This doesn't make sense. Something is not right."  Despite the certainty of death as the conclusion of life, so few people are prepared for it, equipped to face it, or are even okay thinking about it.  Could it be that we rail against the inevitability of death because we were initially designed not to die?

We live in a fallen world - a world fundamentally fractured from close to the very beginning by man's sin, or disobedience to God. But God in his mercy and love provided a way to overcome all the wrong, all the hurt, all the sin that keeps us apart from Him.  A way to reconcile with us, who He loves, despite all the things we've done that disappoint and offend Him.  That answer is Jesus. He is the only person that can make the wrong of this world right.

When he came to earth two thousand years ago, He came in the form of a little baby. He was God in the flesh, yet fully human so he could sympathize with all the things we struggle with.  He was sent to earth to right the wrongs of every human that ever existed or would ever exist. When he was sent to die on a cross, He bore the sins of you and me and took away the penalty of death we all deserve for our disobedience, our rebellion. And not the kind of death I'm facing right now- one where your physical body dies but your soul lives on. I'm talking about an eternal spiritual death that we deserve because of our sins - one where we die here on earth, but then also spend an eternity separated from Christ in Hell (talk about no bueno, that is way worse than cancer).

The good news is that this earth, so full of pain - babies not making it full-term, a young mother dying of cancer, bad things happening to good people - is not all there is:

"For what is your life? It is even a vapor that appears for a little time and then vanishes away." (James 4:14)

I have hope. Not just for the one in a million chance that I beat cancer, but I hope for my forever home, Heaven. Where

"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever." (Revelation 21:4)

I hope for Heaven. I hope for a time when there is no more pain and no more sorrow. Where all the fundamentally broken parts of this world, fractured by sin - from hurricanes to stillbirths to cancer - are made right, as God intended it to be in the beginning. Where anxiety and death are no more.

Are you hoping for Heaven? Do you ever think about the fact that we are all going to die someday, and somehow that includes you and it includes me (this is often still tough for me to wrap my head around)? Do you know what happens after we breathe our last breath and close our eyes for the final time in this world?

Because I have accepted Jesus Christ as my Savior and have given him control of my life, and because I believe he died on a cross two thousand years ago to pay the penalty for my sins, I know that when I breathe my last breath, I will be in the presence of the Almighty God- the Creator of the Universe.

I challenge you this Christmas season to think beyond the presents and the pretty lights, and think about the baby in the manger and what that means for you personally. You may have grown up in a church but haven't gone since you were a kid. You may be logically opposed to the "crutch" of Christianity for any of a dozen rational reasons.  You may have been turned away from a religious system in which you have seen hypocrisy and corruption. Or you may be seeking for someone to take away the pain and anxiety you feel in your life this season.  No matter where you are, Jesus wants to meet you there today and allow you to have a new life starting here on earth, before we even get to our forever home.

This is how I am able to have joy in the midst of seemingly insurmountable odds. This is how I'm able to have hope for tomorrow and peace for today despite my, let's admit it, pretty horrible situation. It isn't hope in doctors, or medical advancements, or leaning on my husband for support, or "the power of prayer" - it is because the same God who created both distant galaxies and my beating heart cares for me, talks to me, loves me, and supports me through this.  It isn't because I'm some superwoman Pollyanna- it is because I have new life in Jesus Christ.

"Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come." (2 Corinthians 5:17)

I'm quickly learning that since I have cancer, I can pretty much do whatever I want (in fact I wore a workout jacket as a top to church last Sunday...that's when you know you've given up just a little bit). So in that vein, since I don't know how much longer I have, I want to directly address all my dear friends that think of me as their "slightly fanatical Christian friend": I want to tell you that I want you to be there with me when I die and I go to Heaven. I want to save you a seat. I want to have an eternity of hanging out and ab-splitting laughter with you. Please don't let another day go by without figuring out exactly what you believe about these issues of eternal significance. Just because I got the heads-up of a cancer diagnosis - a reminder of mortality before actually having to face death - doesn't mean everyone else will. Think about eternity. It is hard. It is weighty. Sometimes it kinda sucks to wrestle with. But it is worth it. 

I love y'all. Thanks for letting me go off on my religious-nut-job tangent. Now back to the regularly-scheduled cancer updates. <3

IBC Research - 2014 Matching Campaign

A donor has come to me offering to match up to $2,000 through the end of the year for any money donated in my honor to the IBC Network. 100% of the money raised goes to funding IBC research (the founder works as a volunteer). One of their projects needs a second $50K for research specifically for triple negative IBC women (like me!).

Your donations are tax deductible so what better way to save a little on your 2014 tax returns then by giving to my kind of breast cancer that receives little to no other research funding! Help change the stats for future young mothers so they don't have to die of this terrible disease.

Donate here

Every donation helps no matter the size!

Merry Christmas to me!

Merry Christmas to me- my PET scan was clear! 

[My plan was that if the test came back with the opposite results I was going to title this post- "Merry Christmas to me, I have terminal cancer!" Pretty stoked that is not the title. :-))))]

Seriously though, what an answer to prayer! On Monday, I could tell the doctors thought I was metastatic. Technically the new chemos they've prescribed me are for "metastatic breast cancer". My long term disability paperwork my doctor filled out for me has "metastatic breast cancer" as the diagnosis. In spite of all that, I was having trouble believing I was metastatic (probably just a denial coping mechanism) because I didn't have any symptoms (not that you have to have symptoms to be Stage 4). When my doctor texted me the preliminary results that the PET was clear, Brad and I didn't really celebrate like you might expect. We truly believed that would be the case. The morning had been incredibly peaceful as I slept during the PET prep time and scan. I slept well the night before. Just simply no anxiety about the test.

I know this is going to sound totally crazy, but I really believe I still have a shot at this. I know what the data says. I know how absolutely terrible my prognosis is, but I still believe God is capable and willing to heal me. I think it is all the messages from family, friends, and even strangers reinforcing that idea of hope in me. Thank you! When you believe I can be healed and think it is worth your time to pray for that healing, it makes me feel slightly less crazy for continuing to believe in, hope for, and pray for a miracle.

My oncologist that I just love so much at UT Southwestern was undoubtedly more reserved and more solemn during our appointment. She understands what my "significant disease progression" implies about my future treatment and potential response. I think she is more realistic about what my future holds. She said that she will be the first one to let me know once we have exhausted all our options for treatments. Praying that that day never comes or it is very, very far away still.

The best case scenario to be praying for is that:
+ My two new chemos work wonders on my tumors, lymph nodes and circulating cancerous cells in my bloodstream (with minimal side effects)
+ We are able to get to surgery and remove my breast, skin, and lymph nodes, with clear margins (they get it all)
+ The pathology report shows no evidence of disease after surgery (chemo removed all the cancer)
+ I'm able to get in a (later) phase clinical trial for a new chemo to try for triple negative adjuvant (after surgery)
+ Finally, we are able to do radiation to do a mop up of whatever cancerous cells are left in my body
+ My bones, liver, lungs, and brain would be completely protected during treatment and that no rouge cancerous cell would start to grow distantly in my body
+ I make it to 5 years out and am deemed "cancer free"

Just getting to step one or two of the outlined "best case scenario" would be a miracle much less all of them. So for now, I'm focused on getting chemo on schedule and praying that it would shrink the cancer like crazy.

Speaking of chemo - I got it on Friday - yay! You know how much I love me some chemo!!! Brad was with me for the doctors appointment so I had someone with me at chemo which hasn't happened in months!

Also speaking of chemo, we had some trouble getting my second chemo through the pharmacy (it's pill form not through an IV). It was looking like I wasn't going to be able to get it until Tuesday - say what??! I have had too many medical reasons that chemo is pushed out, I was really upset to think about something that was just logistical-insurance-approval-red-tape delaying chemo. Brad worked super hard coordinating between a local specialty pharmacy and my insurance mail-order pharmacy to get an override. We found a pharmacy open on the weekends that carried chemo drugs so I was able to start it Saturday morning!!! Yay!

All the rigmarole made us an hour late to dinner with friends (sorry friends!). They offered to take us out to our favorite steak restaurant on Friday to celebrate the good news. It was delicious and we had a blast! Here's my celebration cake. I even got to blow the candle out and make a wish- I wished for a lifetime of negative PET scans! :-)

Yum!

One Cough Drop

PET Scan

My mom used to say to me,"You are really smart, but you have no common sense!" Today was a perfect example of that. As many of you know, I was scheduled to have a PET scan this afternoon to see if the cancer has spread to my organs (as the doctors believe it most likely has). The instructions were no food four hours before the scan but water was fine. I didn't eat lunch and figured I was probably good with that. As I was getting out of the car to go in for my scan I grabbed a cough drop sort of mindlessly and popped it into my mouth- no big deal right? WRONG. The nurse that was prepping me for the scan kept grilling me to make sure I hadn't eaten anything and mentioned cough drop as something that would be no bueno for the scan. Apparently the PET scan works by putting radioactive sugar into your system, the cancer grabs it first, and then lights up when they scan you. If the cancer already has sugar to process it won't fully grab the radioactive sugar and the cancer doesn't light up.

So the whole thing ended up being called off over a cough drop. The staff was super awesome and rescheduled me for first thing tomorrow morning (have to be there at 6:30am which means leaving the house at 5:45am- ouch!). I may theoretically be able to still get my results tomorrow at my doctor's appointment at 11am and still may be able to get chemo at noon. My doctor wants the results before starting the new chemo regimen (I think they alter the dose if they are trying to cure you (higher dose) vs. keep you alive for as long as possible (lower dose)). No matter how you slice it, tomorrow will be an interesting day.

Thank you!

[warning: lots of honesty coming] Last night I was literally on the floor, crying, essentially having a panic attack thinking of leaving the boys without a mom. Every adorable thing they did made me burst out in tears thinking about how badly I didn't want to leave them. Brad and I spend a good 15 minutes in prayer just crying out to God to spare my life and begging him for a miracle. I felt so anxious and alone and prayed to God to restore my peace and my joy.

I had asked a couple of friends to come over after their kids went to sleep to help me with a Christmas project and spend some time with me. I debated about calling it off since I wasn't exactly in the best shape to be having guests. I'm so glad I didn't. Having them around reminded me what my life is like- it's stinkin' awesome. I have great friends, a beautiful family, a wonderful support network- if it wasn't for the cancer, I would have literally nothing to complain about. Being around them made me feel like everything was totally normal and fine.

Last night I had a wonderful night's sleep and today I had complete peace (literally zero anxiety) and total joy (laughing and dancing with kids all day). It was as if I was completely on my face in the pit last night, Brad got me up to my knees, my two friends lifted me up to stand, and then the countless messages via facebook, text, and email allowed me to run. Brad and I took the longest walk we've done in awhile just because I felt so good and had so much energy. In fact, I raced him up the hill in our neighborhood!

How does that happen? How can I have a complete 180 in a matter of hours? You know what that is? I'll tell you what that is not- it is not logical or natural. It is supernatural. It is the prayers of maybe thousands of people across the US and world praying for me today. It's the countless encouraging emails, texts, calls, facebook messages, and blog comments left by so many of you.  God has done a mighty work through y'all. You have been the hands and feet of Jesus to me today.

Thank you, thank you, thank you.

I feel ready to face whatever tomorrow brings- whether that is terminal cancer or a complete miraculous healing. Thank you for your love, encouragement, and prayers. They mean the world to me.

Praises + Prayers (12/17)

Praises
+ I have the best medical team on my case in the world. No one knows better how to treat me than the IBC clinic at MDA and no one cares more deeply for me than my oncologist at UT Southwestern.
+ I have the most loving and emotionally supportive husband in the world. Not only has he stuck by my side when many men might run, he continues to love me so deeply and so well. I feel like I can face anything, including this current trial, with him by my side.
+ I have really amazing kids. David continues to grow and be healthy and seems to get cuter by the day. Noah has the best personality- so sweet, loving, and entertaining. I love both of them more than words can describe.
+ My parents are amazing and live in the same city as me. I'm so thankful to be in the same city as my parents. There is no way we could handle all the treatments logistically without my folks being an extension of us.

Prayers
+ My PET scan would come back negative for metastatic cancer and that I would continue to have a shot (if even ever so slim of one) at being "cured".
+ I would be able to get chemo on Friday and that it would be massively effective against the cancer waging a war on my body.
+ Despite the 0-5% chance I have at surviving now, that I would continue to stay positive, hopeful, and have peace and joy.
+ Brad, my parents, and close friends would be given the grace to handle the bad news and cope well with it. 

MDA Visit - Bad news

This will be a long and heavy post I imagine. This is going to be one of those posts that is actually more for me to use as a processing mechanism than anything else. So here goes...

Sunday

Brad and I drove to MDA Sunday evening after a wonderful weekend with friends visiting and a morning of worship that included Brad and I sharing our testimony with our Sunday School class. It was one of the best weekends I've had in a while; it included me laughing so hard that my abs hurt (or the area that used to be my abs). I woke up not feeling so good Sunday morning (emotionally and physically) but God was so incredibly faithful to give us the strength to still speak in class. At the end of the class, everyone prayed over us. It was very moving.

One of the partners at the company I used to work for offered for us to stay in their guest house while in Houston. It was magnificent. After all the hotels, nice homes, and places around the world we have travelled, I think I can say this was the nicest, most comfortable place we have ever slept. Not having kids to take care of overnight was great for getting a really good night's sleep both evenings in Houston.

Monday

Despite my tumor(s) growing over the past month or so, I had the most wonderful peace driving into MDA on Monday morning. Thank you to everyone that was praying for us. I felt so calm and actually very happy for most of the time spent at MDA.

Monday was surprisingly really fun. I got to see a college friend that works at MDA, a fellow breast cancer friend from Dallas that had appointments the same day as me, and a researcher post-doc friend that always gets me good data. I actually had more meetings on my social calendar than medical appointments, so it was easy to believe that MDA is a totally normal place for hip 20- and 30- somethings to hang out.  The only not-so-fun part was during the ultrasound when I watched the technician find many dark spots and take measurements of a whole lot of them. For my primary tumor she actually had to zoom out to see it. :-(

Monday evening was such a blessing to us- our hostess had made homemade lasagna (made with sausage from an elk her husband had killed!), set the table, and given us wine from her cellar. Her and her husband went out to a concert for evening and gave us a rare night alone to just be together- what a gift!  Brad and I were able to have a wonderful date together and a very genuine, heartfelt conversation about hope, faith, love, trusting our God through this, and considering all possible outcomes.  It felt great to have a long, safe, & honest conversation that acknowledged the chance that I might not make it through this alive.  It helped prepare us for what was coming the next day.

Tuesday

The next morning our lovely hostess got up early and made us breakfast before heading out to a meeting with the CIO of a $10B company. Can I please be her when I grow up??



My appointments weren't until the afternoon so that allowed me some time to pray and prepare my heart for the day's appointments. I again felt a wonderful peace as I prayed that morning. It was a gorgeous day in Houston, so that definitely didn't hurt!

The first person that met with us was the surgeon's Physician's Assistant. She ended up having to be the bearer of very bad news. You probably already have caught that I was diagnosed with essentially the most aggressive form of breast cancer - IBC, triple negative, with 96% of my cancerous cells replicating. So within that group you can have four categories of responses to chemo - 1) All the cancer is gone (that was the pCR we've all been praying for), 2) the cancer decreased somewhat but not fully gone, 3) the cancer stayed the same, or 4) the cancer actually progressed over the course of chemo.

Unfortunately, mine was the fourth option- I have had "significant disease progression" after the six months of chemo. This is the worst thing I could have heard from the doctors yesterday. They believe it may have spread to my other organs and so I have a PET scan tomorrow (Thursday) to investigate that. My breast is full of "satellite tumors", the primary tumor has close to doubled in size, and I have more lymph nodes involved both in my armpit ("axillary") and around my collarbone ("infraclavicular" and "supraclavicular"). The single good piece of news was that there were no "internal mammory" nodes found (under my breastbone).

So now they have started to treat me the same as a metastatic patient: taking surgery off the table for now and putting me on a different combination of chemo drugs with the hope of controlling the growth of the disease. There is a chance that the new chemo drugs could control my cancer better than the ones I've been on and I could move on to surgery later. The problem is that in order to do surgery I would have to be able to be off chemo for 7-8 weeks.  If the cancer is not well controlled (i.e., gone or almost gone) before taking an 8-week break from chemo, then there is a significant chance of it cropping up somewhere else.

Where do we go from here? 

The next steps this week are PET scan Thursday (with results on Friday) and two new (for me) types of chemo starting ~Friday (hopefully). We will try two rounds of chemo over six weeks and see if they work. We will know pretty quickly if it is working since my cancer grows at the speed of light. At the end of six weeks if it looks like its working then I will keep going on it; if not, we switch to something else. (Each time we switch, the probability of it working goes down.)

Brad and I were devastated by this news. My prognosis now is pretty rotten. All I could think about when they were telling me the news was the boys and Brad. I'm afraid that there is now a very good chance that David and Noah will have no memory of me and will grow up without a mother. This thought is extremely hard for me to deal with. I hate thinking about leaving Brad to handle raising two small boys, while working full-time, on his own. I hate thinking about leaving Brad without a life partner to depend on and enjoy life with. I feel badly for my parents potentially losing a child. I feel badly for my close friends - especially some friends who have their own crises they're going through right now.  I wish I was supporting them through their struggles instead of piling on my own. I am so sorry to the people that have been keeping up with the blog that I can't report better news to you, that I can't strengthen your faith through the story of a miraculous healing. I am so, so sorry.

On the way out of the doctor's office I was crying and saying to Brad, "I guess God has chosen not to work a miracle in my life. He hasn't heard our prayers." We got on the elevator to go back to our car and were hugging while I was still crying a little.  One other couple was riding the elevator with us. As we got off the elevator the other couple asked if they could pray with us.  We accepted - we will take all the prayer we can get.  We had no idea who they were, and actually didn't even catch their names.  Then, as the gentleman was praying, he prayed a word-for-word response to the statement I had made not five minutes earlier.  He prayed, "Lord, give this woman the courage and faith to know You are big enough to heal her and that You are a God of miracles, and You can work a miracle in her body.  Thank you that you hear our prayers."  Then, after the prayer, he looked right at me and said, "hold on to your Faith.  God is still in control."  Brad says that if we have ever in our lives been visited by literal, physical angels, it was that moment.  To have complete strangers answer back a faith-affirming response not 5 minutes after I uttered a statement of hopelessness and despair... even if they weren't angels, then it is an amazing testament to fellow members of the corporate Body of Christ being sensitive to the prompting of the Holy Spirit and encouraging us with words straight from the heart of God.

So now I struggle between hoping/praying for a miracle - to still be cured despite immense odds to the contrary - and the scientist/realist in me that knows what my future looks like statistically. I am still hopeful that I am not metastatic (yet) and that the PET scan tomorrow will come back negative. I want the new chemotherapy to work amazingly well, allow me to have no evidence of disease, and go on to surgery. I want to be cured and live a long and wonderful life with my family. I want to host a massive party for David at his 5th birthday. Lord, please allow me these experiences.

My "plan" for now is to take it one day at a time. Each day that I wake up and still have breath in my lungs, I'll ask God to use me for His will and for His glory in that day. Instead of having some grand plan of the perfect treatment and associated response (i.e., that flow chart I built), I will try my best to "go with the flow".  Anyone that knows me, knows this will be incredibly difficult for me. I will keep asking "what's next?" and praying to Jesus that there is still a "next" to try.  God is still good, and He is still in control, even in desperate moments when I don't feel him close by.

So today I woke up and had a pulse. I feel healthy and have no symptoms. Today I will be thankful for those things, and I will be grateful for every single day that God allows me to live.

Hair Update

Let's talk about hair!

New Wig

I was working on getting my wig reimbursed by insurance and needed to get a copy of the receipt. I stopped by the wig shop on the way home from chemo one day and found a super fun wig on the clearance rack. The wig is way more like my old hair and even has a little red in it. I feel much more like myself when I'm in it.

Hair Growing Back

Look how funky I am

My hair is starting to really grow back in. I can't imagine how much it is going to grow once I stop the chemo. It looks about like my old color and texture so far, which I'm really happy about. I even got complemented on my very avaunt-guarde "haircut" the other day at Hobby Lobby. It will be awhile until I can go get a real haircut and style but in the meantime it is fun having something on my head.

I'm trying not to get too attached to it in case I have to go on more chemo before or after surgery (a distinct possibility). I'll be bummed to lose it again if that happens but happy that we still have options to try.

Beautiful Lengths
Before all my hair fell out, I got my hair chopped off to give to Pantene's Beautiful Lengths. I've given twice before to Locks of Love but those wigs are for children's wigs. Pantene's goes to adults too. It has taken a bunch of months but I finally got that in the mail. Yay for real hair wigs for folks.