Thursday, December 25, 2014

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

Tuesday, December 23, 2014

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!








Saturday, December 20, 2014

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!

Friday, December 19, 2014

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.

Wednesday, December 17, 2014

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.

Monday, December 15, 2014

Christmas Party

Brad and I offered to host our church group's Christmas party this year. Everyone kept asking me if I was really sure we wanted to take this on. They didn't even announce that it was at our place for a few weeks just in case we changed our mind (/came to our senses). They offered for the event to be potluck but I really wanted to cook for everyone as a thank you for all the class has done over the last year for our family. 

Knowing we would be out of town the weekend before the party Brad and I started decorating for Christmas the day after Halloween. I must have made a dozen trips to Hobby Lobby, Micheal's, Costco, and Walmart for decorations. My mom said I needed to be on a 12-step plan for my Christmas decoration addiction.

I planned the whole menu out with an excel file to boot. I went to Costco just for a planning trip to decide what to make and plan out the budget for it. I was SO excited. It was all I could think about the whole month of November. 

Then I wound up in the hospital with the flu, and my family got the flu, and my chemo day got moved to the day of the party. Talk about being bummed. Even the doctors at the hospital heard about my Christmas party and were working on getting me well in time to still host it. 

The leaders of the group called me all week begging me to call it off, that everyone would understand, no one wanted to get me more sick as I tried to run around getting everything ready. I finally conceded that I couldn't cook everything since I was getting chemo the day of the party, but Brad and I still really, really wanted to host it. We had just worked too hard getting the house ready for the party. 

In an email to the class leadership I said doing this party was like the Make a Wish foundation- my wish was to host a Christmas party!

This is how awesome our church group is- they rallied around me and essentially threw the party for me. I sent out a list of things that still needed to happen and they made it happen. All I had to do on Friday was show up (granted, at my own house). People brought food and drinks, paper plates and cups, friends came over after I got home from chemo and decorated my Christmas tree and the house. Someone even bought White Elephant gifts so Brad and I could participate in the gift exchange. It was incredible!

And you know what? The party turned out way better than if I had tried to pull it all off on my own. People picked up to-do's that fit their strengths and really nailed all the details of the party. Everyone seemed to have a great time and I was completely stress-free. 

Do you think it is too early to start planning for Christmas Party 2015? ;-)



Thank you to Lisa for taking all these photos at the party!
Brad did an awesome job on the lights!
My team of "elves"! They were the magic that made the party happen!!
Janice sent this beautiful arrangement!
The Ranges sent an arrangement too!
Favors
Love my Lands End stockings. They look like Grandma knit them!
What a good looking group!

They look good even while being silly!
Happy Birthday Jamie!
Thanks for spending the day with me and decorating my tree!!

Love my handsome husband. Doesn't he look dapper?
This Christmas tree was naked about four hours before the party started!

Thanksgiving = Flu


After 5 ½ months of being completely sickness-free, I came down with the flu over Thanksgiving. The good news is I’m still alive! The bad news is chemo was delayed and David and Noah got sick.  But I'm getting ahead of myself...Thanksgiving week started with an early trip to the airport to fly to Atlanta.

Us in the car at o'dark thirty on our way to the airport!
The week in Atlanta was really nice (once we arrived). I don’t recommend anyone try to fly with two "lap infants" (as though Noah could be called an "infant" anymore). It is totally nuts- and that was with me in a wheelchair and a guy helping us get through security. They made us sit on separate rows since there's only one extra oxygen mask per row of the airplane.  Brad said that given the stress level already he'd rather sit together on the same row and if things went bad enough to warrant the use of oxygen masks he'd volunteer to go without.  Noah (with Brad) was great on the plane - though Brad had to apologize to the jet-setters sitting next to him since they heard "Cat in the Hat" more times than they probably wanted to.  David was also good - so par for the course for him.  So thankfully the plane was fine, it was mostly the logistics getting on and off that were stressful.
In Atlanta we enjoyed spending time with Brad's folks, and both of our siblings and their spouses/kids. I don't get to see my brother that often so spending time with him and his new bride was wonderful! 

I stayed up until 2am making pies the night before Thanksgiving...maybe that is how I got the flu!
One night while we were there I was reaching into a trunk for something and the trunk lid came down on my head. I fell to the ground screaming- "Brain bleed! Brain bleed!" This was a fear of low platelets that my oncologist had instilled in me to try to keep me from doing things I shouldn't - like getting up on ladders, etc. I was fairly confident that was the end for me. My head was going to turn into a soup of bloody mush. Thank goodness my brother and sister-in-law are physical therapists. They were able to calm me down, put some ice on it and declare me fine. Turns out I have a pretty hard head.

On Sunday, Brad and I had the opportunity to speak at the Range’s church in the youth group. They are studying Joseph and the suffering that he went through so they thought our story might fit in well. It was really fun. I would love to do this more often. It makes me feel like what we are going through is not for nothing. We will get the opportunity to speak again in a couple weeks at our church group. It is fun getting to share the lessons God is teaching us with others. Maybe others can learn these lessons without having to go through suffering themselves!

Sunday afternoon I started not feeling so hot to the point where I couldn’t get out of bed to help Brad pack. My temperature started climbing and the doctors said to go to the ER once we arrived in Dallas if it was above 100.4. Let’s take a moment to talk about how much of a hot mess I was: we were sitting at the gate; I was feeling miserable trying to handle David while Brad was down the terminal chasing after Noah; my nose was just run, run, running; my fever was going up, up, up; Noah is running all over the place, melting down because he is starving- it was pure craziness. You know you are hot mess when half a dozen strangers ask you if you are okay and if you need help. I started crying as this sweet lady told me about her husband’s terminal cancer situation. (She even wrote this super sweet note to me on the plane!)

I went and took my temperature one last time in the bathroom (didn’t want to scare anyone sitting at the terminal with all the recent Ebola stuff!). It was up to 101.4- it just flew past the 100.4 mark. I texted my oncologist and she called me back immediately telling me I shouldn’t get on the plane but should get to a hospital ASAP. (How awesome is she btw, calling me on a Sunday evening!!) Brad and I were about to be the last ones to board, our bags were already gate checked and on the plane. We had to make a split-second decision- Brad and Noah boarded and David and I left the gate to leave the airport. This is going to sound super-melodramatic now knowing the end of the story, but at the time I was scared as I said goodbye wondering if I was going to see Brad again. See, I told you, melodramatic; but it really was scary at the time!!

My in-laws were already back home by this point and would have a 45-minute drive back to the airport. My oncologist told me to take a cab as every minute counted and I needed to get IV antibiotics in me ASAP. There was a line at the taxi stand and the traffic was bad on the way to the hospital so I made a crazy decision and called 911. As nutty as it sounds to get an ambulance to take you to the hospital for the flu (again, we didn’t know it was just the flu at the time…), I think it ended up being the right move (of course I haven’t gotten the bill for it yet either…). For one, I don’t think I could have handled David by myself getting to the hospital. Secondly, I would have had to sit out in the ER waiting room catching who knows what kind of diseases. Turns out it looked a little sketch-McGee out there in the waiting room (so is sketch-McGee really not a phrase? There has been great debate about it since I used it in this other blog.  Brad says it's definitely NOT a phrase.)

David and I were waiting outside the airport when the fire truck pulled up, parting four lanes of traffic in front of the airport like the Red Sea. It was sort of embarrassing having a bunch of EMTs coming to rescue from your….fever. An ambulance came up behind the fire truck a few minutes later. At first the guys were like, uhhh how do we get this baby into the ambulance? But it turned out they had a whole contraption for a baby. Once I was in, my temp was up to 102.7. David was a total gem (per usual). I tried to get a picture of us riding along but felt bad being like, I feel good enough to get a pic for my blog but bad enough to need an ambulance.

David chillin' on his first ambulance ride
The EMTs with David. He looks so happy!
Like I said, we got to skip the waiting room, which was awesome for not picking up any more diseases than I already had. It did take a super long time to get things moving while at the ER. I guess in the ER some lady with a fever is sorta bottom of the totem pole. They tested me for a million different things (love how thorough they were!), got me hydrated, and on IV antibiotics. I moved to a floor bed around 3:30AM.

My sister and brother-in-law drove down to the hospital and kept David while I was there. (Thanks guys!) My in-laws stayed with me in the ER until late, which was also super sweet. It is crazy to think that I’ve known Brad’s family for 10 whole years now! They hosted me for Thanksgiving in 2004 before Brad and I were even dating. It was so nice to have family support while out-of-town.

The doctor on the hospital floor was so sweet. He came and listened to my crazy life story and said he was so sorry that I had cancer. He was super understanding and empathetic. It was fun getting to show him my platelets and immune system charts. I’m such a nerd. The best part was that the doctor was super into getting me out of the hospital ASAP so I could get back home to get chemo and increase the likelihood of me getting to have my Christmas party. Check out the “goals” for the day in the hospital:
Today's Goals: To get better for chemo and stay alive
I got out of the hospital Monday, still feeling really bad with fevers. I crashed at the Ranges and slept almost constantly- except for midnight-3AM cyber Monday when I power shopped and bought presents for everyone on my list! That was pretty sweet.

ThankyouverymuchCyberMonday!
I was able to pay $100 to get a confirmed ticket on a flight home Tuesday. My mother-in-law went through security to accompany me to the gate. We finally made it home! It felt so good to finally sleep in my own bed again!

I took the boys into the doctors office (by myself) on Wednesday for David’s 4 month check-up and because Noah was sent home from daycare Tuesday with a fever. They both had confirmed cases of the flu- hurray! I showed up to the appointment an hour early on accident. When the receptionist told me that I just broke down crying. It was sort of embarrassing, and sort of like I didn’t even care at that point. Having the flu and taking care of two small children with the flu is really difficult it turns out.

My chemo got pushed from Tuesday to Friday to allow me some time to recover. I lost my voice Thursday so I was pretty nervous they weren’t going to give me chemo. My doctor started me on antibiotics just to be on the safe side. On Friday my numbers were all nice and high for chemo– yay for chemo! This was my second-to-last Chemo on this regimen, so just one more week the next Friday will wrap it all up. I’m trying not to get too excited knowing that I might go back to chemo depending on the results of the surgery.

I ended up not having a voice for NINE whole days after the flu (Brad says: "It was terrible"). You know how hard it is to communicate with people (including your two year old) when you don't have a voice? It finally came back the next weekend, when we had friends fly into town and we spoke at our church group. (Nice timing!)

Thursday, December 11, 2014

Thirty


[This is what I wrote the night before my bday- Nov 22]

Six months ago as I looked toward my 30th birthday, I was honestly a little depressed. My twenties had been pretty exciting. Being a newlywed with Brad had been a blast, we traveled all over the world, and even got to have an adventure in Boston for two years. Moving from Boston to Dallas, and then into the suburbs with two kids had been quite the slowdown. I could even see a minivan in my near future. I was having a "one-third life crisis".

Then five months ago all of that changed. It is a strange thing to have your view on birthdays totally flipped around. It was as if I was transported back to 15 when turning 16 was the best thing since sliced bread. I suppose every birthday could be your last but when you have a prognosis like mine and you know there is a specific (and substantial) percent-chance of not making it to your next birthday, it makes it a much more sobering celebration.

I used to be annoyed that I was getting wrinkles so young. I have these great smile lines around my eyes from a combination of too much sun for a fair-skinned gal and lots of smiling over the last thirty years. I would complain: how could someone have pimples and wrinkles at that same time?! It just didn't seem fair.

Now my perspective has completely changed. No longer will I complain about wrinkles, never again will I be upset about turning another year older. I am so thankful for turning thirty, for being in the burbs with two beautiful children, for seven amazing years of marriage to my husband, and for "boring" Friday and Saturday evenings at home.

Life is so extremely precious. My hope is that as you read this, you will take this to heart and apply what I am learning without having to go through cancer yourself.

[This is what actually happened on my bday- Nov 23]

It turned out that my 30th birthday was pretty depressing. For some reason I couldn't get my mind past "what if this is my last birthday?". I kept picturing the survival curve and thinking about how there is a 30% chance that this would be my last. Depressing, right?

I was also super weepy all day. I was awake with my thoughts most of the previous night so that didn't help anything.  We got ourselves to church that morning but Brad had to say our prayer requests (I didn't trust myself to speak without crying) and we ended up leaving after small group and not staying for the service so I could take a nap and try to feel better. I was a hot mess (story of my life, right??).

People were super sweet with flowers, gifts, and cards, and that really did help pick me up through the day. My folks took us out for Mexican (and I may have cheated and had a margarita). But even that was kind of a bummer since the service took forever - we were there for 2+ hours which isn't the best when you have two kids under two trying to keep it together. And my mom asked for them to sing to me but they just brought over the dessert instead (I'm one of those weird people who actually likes the waiters singing to you).

One really good highlight from my bday was a quilt that many of you signed over the past few months. A friend made the quilt and then had it sent all over the US to have many friends from different parts of my life sign. Brad did a great job coordinating the movement between cities. Thank you to everyone that worked to get it signed and sent it from city to city.
Thank you Chadin and Mrs. G for the quilt!
I think the biggest thing contributing to me being down on my bday was the tumor popping back up the week before. With the week-long delay in chemo it went from not being able to feel the tumor to it being 1x2 inches overnight. That is ridiculously scary. Whenever my tumor comes back it is harder for me to stay positive and think that we will be able to beat this. Sometimes I am able to rationalize through it and know that worrying about it isn't going to make it smaller.  "Don't worry about tomorrow for tomorrow will have enough trouble of its own", right?

Monday, December 8, 2014

Praises + Prayers (12/8)

My apologies for not posting for awhile. I've had a busy/crazy/crazy-busy couple of weeks. I'll work on updating the blog over this next week. Here's hoping that this week is calmer than the last two have been!

Praises
+ Was able to host our church group's Christmas party due to some amazing support from my friends. It was a huge bright spot for me.
+ Almost done with this regimen of chemo- last treatment is scheduled for Friday
+ Was able to speak at a church's youth group about what we are experiencing - praise God for using our situation for His glory

Prayers
+ David and I are still struggling to recover from having the flu last week. Prayers that I would regain my voice and that David would start feeling better. I really don't want this to turn into something more serious for either of us.
+ Chemo was delayed last week because of being sick. My tumor is back to growing again. Very, very scary to see it growing before my eyes, especially this late in chemo...not as hopeful for a pCR any longer. :-(
+ Prayers for the doctors to have wisdom on when to operate, whether or not to do more chemo, if more chemo, what to try, etc.
+ Prayers that the tumor(s) would not grow in the interim between chemo and surgery and that if they do grow that I will not spiral mentally
+ This is small, but I'm finally feeling the effects of 6 months of chemo - weird sleeping patterns, mouth sores, a little bit of neuropathy, general fatigue; prayers that I would have the stamina to finish chemo strong

Thursday, November 20, 2014

Platelets and Chemo Update

After three unsuccessful attempts to get chemo last week, I was finally able to get chemo on Tuesday. I didn't get chemo because my platelets came up though- I got chemo because my doctor trusts me to not do yard work, climb up a ladder to get Christmas decorations down, or go running in the dark. To quote her text message today- "I care about your organs and your brain" aka she doesn't want me to have internal bleeding from a fall or other forceful bruising. I was instructed to not "blow my nose too hard", to not shave my legs (sorry Brad!), to not chop food, and race to the ER if I start to bleed- even a little. Yay for my blood losing the ability to clot.

Because I love making graphs of data, here is what my platelets have been up to. It will give you a feel for the scale of what's been going on and how low they are right now.

Click to enlarge
I ended up having 15 days between cycles this last time instead of the prescribed seven-day gap. This morning (Thursday) I feel a tumor that has popped up overnight. I have the craziest cancer! Somehow I need to race through these last three treatments so we can move on to bigger and better things like getting my boobs chopped off and my chest radiated (hopefully turning me into a superhero in the process).

Please pray that I will be safe and not have any complications from my platelets being so low. Please pray that my platelets will be high enough to have the final three treatments on schedule. If I'm unable to get chemo next Tuesday, I will have to wait until the following Monday to try again with our family traveling for Thanksgiving. That would be no bueno!

On a separate note, I had a CT scan done last week due to some more chest pain, this time positional and very dull pain. My doctor wanted to make sure I didn't have a pulmonary embolism (a blockage in one of your arteries in your lung). It turned out that I didn't have a blockage- yay! The radiologist reported that my largest axillary (armpit) lymph node has decreased from 14mm to 8mm. So while it is still there, at least it is moving in the right direction. Doctors can not feel lymph nodes in my armpit when doing a manual inspection.

At this point, I think it is safe to say I will have either a partial response (defined as skin symptoms go away and tumors shrink more than 50%, my odds for survival would stay neutral, (I think? It's been awhile since I've read the research)) or a complete response (less likely, but if I did have it my odds for survival would improve dramatically, I believe in the neighborhood of 75% at 5 years). I'm so grateful that my breast has not grown over the course of chemo and that it has not stayed the same.

Now on to knocking out these last three treatments! Woohoo!

Monday, November 17, 2014

Suite Hope - Documentary


I'm on camera!
Last month, Jeanna Doyle (founder of Suite HOPE), came to my home and taught me how to look my best while undergoing chemotherapy treatments. You can read about it here. At the end of the session I was so impressed with her, the organization she has founded, and her mission, that I asked her to let me know if there was ever anything I could do to help her.

Jeanna is in the process of creating a documentary to bring awareness about appearance-related changes women go through during cancer treatments and to educate the public about oncology estheticians that train to assist women with these changes. Part of the documentary will contain interviews from cancer patients to understand their perspective and learn how Suite HOPE has helped.

When Jeanna asked if I would be interested in participating, I answered with a resounding "Yes!" As a little girl I dreamt of being on the big screen so a day of filming in a studio was a dream come true for me! To prepare, Jeanna had a creative director call and give me a pre-interview to help formulate good questions and answers. I thought through my answers a bit beforehand so I wouldn't (hopefully) be a total bumbling idiot once I arrived.

My mom and I drove down south of downtown to Stewart Cohen's studios. Check out his work here (pretty incredible, right?). I'm not going to lie, it was a little sketch-mcgee down there. I'm not sure if it made me feel better or worse that there was a police officer in the parking lot. I suppose it is where you picture a super artsy studio to be though.
Thank you Police Officer
One of the piles of awards
Stewart has won a bajillion awards. There were piles of them everywhere. If you went to his website site you can understand why. You would expect someone like that to have a certain air about them but Stewart was just about as down to earth as you can get. At one point he even made me tea! He made me feel completely comfortable. You could tell he could talk to just about anyone and make them feel like the most interesting person in the world. That probably is a good skill to have when you film people all day every day.

Getting your makeup done never gets old!
The team wanted some b-roll (whatever that is...) of Jeanna doing my makeup so I got my make up done again - yay! It is crazy how good she is:
With and without makeup
I think this shows you how sick I look without makeup (above) but how completely normal I look with hair and makeup on (below):
With and without the wig
During the interview I had an opportunity to talk about my story of being pregnant, getting cancer, and what life is like now going through treatments. I talked about what IBC is and how it is misdiagnosed 9 out of 10 times. I also was able to share how my faith has been the driving factor in being able to handle the diagnosis. We also discussed how fleeting beauty is and how your self-worth and confidence must be found in something more lasting than your outward appearance. As I've learned, beauty can be taken away in an instant.
The crew working
Overall, it was a fabulous experience. If I had more talent in this area, I would love to do it more often. It is so much fun! I'm so thankful Jeanna invited me to participate and I can't wait to see the finished product!
Jeanna - the makeup master!


Wednesday, November 12, 2014

Halloween

This is the first year that Noah has been semi-aware of Halloween. His school had a parade of costumes so we had to find him something to be for Halloween. I went the week-of to find something and the Target costumes were pretty picked over by that point. My friend (who was visiting from out-of-town) and I found an Elmo costume because Noah is OBSESSED with Elmo right now. However, once we got the costume home and tried it on, we found Noah didn't really fit in the costume (it was skin tight - picture Britney Spears' red leather outfit below) and he didn't want to put on the head- he just wanted to hug the head (since it looked like elmo).
On Halloween day I went back to Target and by then the costumes were REALLY picked over. I was searching the aisle with all the other delinquent parents that waited until the day-of to find their kid something to wear. I found a lion costume that looked like it might fit better. 
This actually turned out to be a really good costume since he knows "what a lion says". This is him roaring. Cute, right?
video
A friend sent David this monster sleeper in a Halloween-themed care package so David was a monster for half the day (being a monster is wonderfully out of character for him):

Since David is totally unaware of Halloween I wasn't planning on spending money on a costume. My friend that was in town insisted that he needed one and bought him this pumpkin costume. I have to admit, it too is pretty stinkin' cute:
Also in the Halloween care package was a pumpkin carving kit. I really wanted to carve a pumpkin this year for some reason. I bought one pumpkin mid-October but it rotted in a couple days. Halloween day rolled around and I found a new pumpkin and carved this baby up not minutes before the first trick-or-treaters came by. Better late than never!
For anyone that is under the delusion that we have our crap together, here's a video to set the record straight:
video
Not too much else to say about Halloween 2014. Until next year folks!

Sunday, November 9, 2014

Praises + Prayers (11/9)

Update: I was unable to get chemo this morning (11/10) due to my platelets being 54 (needs to be >100). They have scheduled me to try again at the end of the week on Friday. Please pray that my numbers would cooperate and that I could get thru these last chemo rounds as quickly as possible. I need the chemo to be given as densely as possible so the cancer does not continue to mutate, become resistant, and continue to grow.

I haven't done a Praises/Prayers list in a while as things have been hitting a bit of a routine. As we approach some of the next steps, here is an updated list of things to pray for. Thank you to all of the prayer warriors that are pleading with God for my healing. I look forward to celebrating the miracles with you at David's 5th birthday party!

Praises
+ I've had an incredible amount of joy the last few months as the shock of the diagnosis has worn off and, as I mentioned, the routine of weekly chemo treatments has set in. I find my days pass by much too quickly and I relish each week that I feel healthy and strong. I take a lot of joy in my kids in the fun and cuddly stages that they are each in. I'm so thankful that instead of worrying about what the future might hold, I am able to focus on and celebrate each day, hour, and minute I have to live.

+ Over the past four months I have experienced essentially no symptoms from chemotherapy. I don't think many women taking the same type and amount of chemo I am can say that. My hair fell out, I get more fatigued than I used to, but I have had no nausea, no nueropathy, and no sleepless nights (except those from feeding a baby). The fatigue I have felt may be attributed in part to having two small children that require a teeny bit of energy and attention. :-)

+ I feel so supported and loved. The countless cards, flowers, and gifts, often times from complete strangers, have been a wonderful encouragement to me. I'm blown away by the number of people that have taken an active interest in our lives and have offered whatever they can to help us conquer this cancer. I'm thankful for the dozens of meals we have received and even though I've felt good, not worrying about cooking over the last four months has been amazing.

+ I'm thankful for the opportunity to share my faith with people that I might have not otherwise encountered. This trial in my life has given me a platform with which to glorify God. I continue to pray that He would be more glorified in my life than in my death. I hope you will pray that with me.

Prayers
+ This week I'm playing musical chairs with some of my physicians at MD Anderson. I've requested to have some IBC specialists do my surgery and radiation. Please pray that God would guide the decisions on their side as they evaluate if that is possible or even helpful in my case.

+ Another logistical piece is finding housing for our family in Houston for radiation. I have a list of churches/organizations that offer free or subsidized short-term housing near MDA for people in similar situations. Please pray that God would open doors and that it would be easy to find a good place with a short commute (since I'm going there twice a day during high traffic times).

+ We only have four weeks left of chemo which sort of sounds like a good thing but I'm still pretty nervous that it won't be enough. I still feel tumors in my breast. I'm praying that they are just tumor beds (scar tissue from dead cancer cells). The lymph nodes that we could previously feel have all shrunk (praise!). I know that survival rates drop dramatically without a complete response. Please continue to pray that every single cancerous cell would be gone at the time of my surgery.

+ And finally, speaking of surgery, I would appreciate prayers that it would go smoothly and that I would handle the pain well (both emotional and physical pain). I'm nervous about how I will mentally handle losing my breasts. I'm trying to focus more on "I'm getting rid of the cancer" and less on "I'm losing my breasts" but I've heard from other IBC folks that it is painful to look in the mirror and see Frankenstein. This will be my first real major surgery. I'm nervous about the recovery, especially with two kids to continue taking care of. Also, prayers for the timing of the surgery. We will need to wait until my numbers are up and it is safe but I also have a bias towards it happening sooner rather than later. I've seen the pace at which my cancer grows when not on chemo and if anything is left after chemo, I'm very nervous to watch it grow again. If chemo goes as scheduled, 3 weeks out would make the surgery the week of Christmas, 4 weeks out would make it the week after Christmas. Prayers for the timing to work out well.

Again, thank you so much for taking the time to pray for me. I know we serve a God that is more than powerful enough to heal me on this side of Heaven. 

Friday, November 7, 2014

Dallas Stars Game


Over the past month, I've had the opportunity to connect with two inspiring young women that are currently surviving breast cancer. The first is Julie - she is 29 and had triple negative IBC (like me!). She has been through all the treatments (even got a pCR!) and is on the other side right now with No Evidence of Disease.

Around the same time I met Julie, I also had the opportunity to spend time with Shari. She was diagnosed the same time I was with Stage 4 breast cancer in her liver and bones. She also recently had a baby (her daughter is 9 months old and is adorable!). A social worker at UT Southwestern connected us because of our advanced cancers and both of us being young moms.

Julie works for the Dallas Stars and has had an opportunity to connect with the General Manager's wife, Bekki, as Bekki also has breast cancer. She was diagnosed 12 years ago but unfortunately it has come back in the last few years in her liver and bone (same diagnosis as Shari). 

Bekki organized a breast cancer event in one of the Star's suites last week and Julie was able to score me a couple tickets to the game! It was ah-mazing!!! I took my new friend Shari thinking she would probably get the most out of the event. A big thank you to my friend Lindsey for watching Shari's baby for the evening! Lindsey and I got home close to midnight and she had to be up at 4:45am to teach 20 2nd graders the next day- crazy!  My dad has a coworker that lives in a condo across the street from the arena and let us valet park in his building for free- how la-te-da is that? Thank you Dave!

I've never been to a box at the Stars, but I've decided that's really the only way to see an ice hockey game. :-) I was mostly excited about the food/desserts/view/cushy seats but it turned out the people we got to meet and talk with were definitely the best part.
Platinum level box suite!
We were able to hang out with the Dallas Stars Coach's, GM's, and President/CEO's wives pretty much the whole night. They were all incredible women! A few of them even were offering to watch Shari's baby when she has chemo! How nice is that??

We also got to meet Dee Simmons (and her daughter) of the UT Southwestern Simmons Cancer Clinic! She had breast cancer 20+ years ago and her family donated the money to UT Southwestern for my clinic. She was just as fabulous as you might expect!
Dee & her daughter D'Andra
There was an uncharacteristically young crowd for breast cancer folks and a group of them meet regularly for unofficial emotional support. I'm excited about meeting up with other young women with breast cancer.

Overall the night was stinkin' fantastic. Shari and I felt like we got the royal treatment. It was a huge encouragement to both of us. Thank you Bekki for organizing the event and making us feel so special. <3
Bekki and Shari