Saturday, February 28, 2015

Uni-boob!

Well I'm officially a uni-boob and it's never felt so good! Looking down and not seeing cancer hanging off of you is pretty much the best feeling in the whole world. I know most women that have a mastectomy have a lot of trouble with losing one or both of their breasts, and maybe I'll be sad about it eventually, but all I can think about right now is- woohoooo!!!!

A week ago I was so depressed- no trip, cancer was growing again, and we were running out of options. I honestly thought I had 3-6 months to live- max. Going to MDA this week, I was preparing myself for the worst. Instead, we heard that 1) my cancer had not spread, 2) that the tumors in my breast were stable and/or breaking down, and 3) we had a window for surgery and that they would make room for me the very next day- it was all so unexpected and simply mind-blowing.

Surgery

The day of surgery was pretty uneventful all things considered. I was really excited getting ready for surgery. I was literally dancing in the pre-op waiting room I was so excited.
Yes! Cut this cancer off please!
Brad had a little entourage in the waiting room with him. Thanks for everyone that stopped by and kept him company!  There was a status monitor that showed my progress from pre-op to currently in surgery to recovery; Brad joked around that it's like ordering a pizza from Dominoes where you can monitor the status bar as they make, bake, and deliver.
Range in surgery- yay!!
The doctor came out at the end of my surgery and gave Brad a summary of how it went. The short story is that it went extremely well and there were no downsides to the operation. She felt she was able to get clear margins (removing tissue beyond the tumors, therefore getting it all out). She was able to get out my infraclavicular nodes (lymph nodes below the collar bone) and all of my axillary lymph nodes (armpit ones). She took as much skin as she possibly could while still being able to close the wound without a skin graft. I asked her before the surgery to take as much tissue/skin/lymph nodes as possible and still keep me alive at the end of the surgery. I didn't care about how it looked, I just want the best chance possible of living. I think she got the memo.

They gave me some IV drugs as I was wheeled into the OR so I was still awake but feeling pretty loopy. I don't really remember this, but later this story was relayed to us by the doctors and nurses who were present in the OR at the start of surgery: I took off my mask and said, "Hey everyone, I have something I need to say before we start." Everyone stopped what they were doing and just turned and looked at me. The nurse said I had everyone's attention. Then I proceeded to pray over all the staff and the surgeon and the operation. The nurse the next day said it was less of a prayer and more of a short sermon as it was at least two minutes long- hahahaha. She said it was actually really articulate and beautiful. Don't ask me how someone can be "articulate" while on loopy drugs. I'm going to go with that was the Holy Spirit speaking. Too funny, right?

Another funny anesthesia story is that right when I was waking up, I told Brad we needed to check on the status of the recliner I ordered off of Ebay. Brad was nervous someone let me online shop while drugged up- now that sounds dangerous! So apparently I was still decorating, even under general anesthesia.

A bunch of friends were there when I woke up from surgery that night and staying for a couple hours with me. It was so fun having a little party in my room! (Wish I had taken a picture!)

Recovery


I didn't sleep much the night after surgery. I felt like a little kid on Christmas morning. It felt like the night after delivering Noah. The nurses kept coming in that night, finding me holding Noah in my arms, just staring at him. They told me to put him down and sleep while I could! I told them I had waited nine months to meet him and I couldn't look away- I was so in love. It was that same kind of happiness and excitement that kept me up, excited to finally be free of the primary tumor, excited to have a drastically increased chance of living past the next 6 months.

I was discharged 12 hours after waking up from surgery. We were told to hang out in Houston for one night before making the drive back to Dallas. Our host home has taken such good care of us.
Tough life I have, I know.
Julie- the most amazing hostess!
Julie even made us homemade chicken noodle soup with home-made noodles, broth, and mashed potatoes all from scratch!! It was the best tasting soup I've ever had. Wow!

Our good friends Allison and Joey helped me home from the hospital too. Allison is a nurse and did an awesome job getting me cleaned up and settled at the house. Allison even made me PJ's with pockets for my drains. (you don't want to know what a drain is, it's gross.)

Next Steps

So overall I'm feeling great. My pain is being managed well with the drugs prescribed. Brad is rockin' it as my nurse. I'm trying my best to just relax (as much as I'm able to do that). Life is good!

We go back to MDA March 10th to follow-up with the surgeon and to start prepping for radiation. Radiation should be starting in 2-3 weeks from now (rushed from the standard 4 weeks for me, hopefully).

To be honest, I'm still pretty nervous about being off chemo for so long. Please continue to pray for my organs to be protected from the many cancerous cells floating around in my lymph system and bloodstream. Pray that none of them would land and start to grow anywhere else in my body. I've heard lots of stories about women getting metastases during this post-surgery waiting/healing time.

Also, while I'm absolutely thrilled about making it to surgery, and honestly thought that this might never happen, we are not out of the woods. Unfortunately I still only have a 10% chance of making it to two years out.  That number is based on the historical data around the population of folks who share these characteristics: IBC Triple negative patients treated at MDA, that made it through chemo, surgery, and radiation, were stage 3 at initial diagnosis, and still had residual disease at surgery. Though the numbers are still grim, getting to surgery at all made my chance at survival go from ~1% to 10%, so I'll take it! I feel like I actually have a real shot at making it again! woohoo!

Hope you are getting ready for that fifth birthday for David. Getting to surgery is going to be written on at least ten balloons!

Friday, February 27, 2015

Praises + Prayer Requests (2/27)

Praises
+ Felt enormous amount of peace and joy during the trip to MDA, zero fear going into appointments
+ PET and thyroid biopsy came back clean! Praise the LORD!
+ Primary tumor has broken down into lots of smaller tumors and my lymph nodes were stable
+ MDA was able to schedule me for surgery less than 24 hours beforehand

Prayers - SURGERY 2/27 at 1pm
+ Please pray for my surgical team, especially my surgeon:
    -that angels would be in the operating room with us
    -that God would guide her hands
    -that my surgeon would be able to get "clear margins" - meaning they are able to get all the cancer through surgery
    -that she would be able to get all the cancerous lymph nodes out, but not more than they need to
    -that the residual disease would be minimal (how much disease is left in the tissue they remove)
    -that the pathologist working with the team would be accurate in giving feedback about if they've removed enough tissue
    -that my wound closes after removing so much skin
    -that my surgeon would have stamina to operate on me after her first case in the morning
    -that my surgeon would have supernatural guidance on how much tissue to remove and to get all of the cancerous cells out of my body.
+ Please pray for my recovery:
    -minimal pain and discomfort, that the pain medicines will be effective
    -no infections in the incision site
    -quick healing and recovery to move to radiation as soon as possible
    -that I would be able to rest and sleep well during my recovery
+ Please pray for the logistics:
    -for my parents as they take care of our kids - for stamina and rest for them, that the baby would sleep at night
    -other logistics stuff we don't even know about yet!
+ Start praying now for NO DISTANT RECURRENCE!
    -it is extremely common for cancer to pop up in organs/bones during this time of local treatment (surgery/radiation), please pray that that does NOT happen!

Miracles Do Happen

Are you sitting down? Maybe you should sit down.

Tomorrow I'll be doing something WAY better than sitting on a white powder sand beach with a tropical drink overlooking crystal clear water- I will be getting a unilateral modified radical mastectomy.

That means the one of the most talented, experienced, IBC breast surgeons in the world, will be removing one of my breasts, the skin around my breast, and lymph nodes that are enlarged from cancer around the breast, at 1pm tomorrow (Friday).

Today

Today was pretty stinkin' terrific. Whenever we come to Houston we are enveloped with love with our host home's insane hospitality, seeing some of our bestest friends, and hanging out with friends at MDA. One friend even brought the beach to us today and left a bag with beach-themed goodies at the check-in desk. The best part was a "european-style" swimsuit for Brad. The ladies in the breast center waiting area got a nice chuckle out of that. :-)

I had a pretty good morning finding out from the radiologist that my PET from the day before was clean, my thyroid biopsy came back that nodules there are benign, and it appears from the ultrasound that the tumors in my breast are stable. I honestly was a little chagrined that I had caused such a ruckus to get all my appointments rescheduled to this week, cancelling the trip, etc.

We met with my oncologist in the afternoon, he reviewed the three reports- PET, MRI, and ultrasound with us. Even though my right breast has been growing in size, all three reports said that the tumors were either stable or decreasing (don't ask me how that works!). The best part though, was that he wanted to take me to surgery. I couldn't believe my ears. My oncologist, surgeon, and radiation-oncologist all sat in the room with me to go over the plan. I'm so impressed with my team. They are literally the top physicians for IBC in the world- all working together on my case. Wow.

Initially the surgical team was talking about doing the procedure sometime in the next few weeks. I asked what the constraint was that needed more time- the schedule or my body. They said it was the schedule. At that point I started begging my surgeon to take me tomorrow. It was 3:30PM by that point and she said there was no way we could get surgery scheduled that quickly. She finally caved and said she would just check and see if anyone from scheduling was even still in the building. Lo and behold, she graciously moved stuff around, someone in scheduling was still at work, anesthesiology stayed late to have my consult, I ran around the lab area with people just waiting to see me - blood work, urine sample, x-ray, and EKG. One lady popped out into the hallway I was rushing down to leave and she said - are you Ashleigh? You need an EKG! So I went in and got an EKG. Just pure craziness.

I came out of the lab into the waiting room, singing loudly the hymn, "Count your blessings name them one by one!" The whole time we were running around the hospital getting all this stuff done, I kept excitedly telling the medical people that I was getting to have a mastectomy tomorrow! Everyone looked at me like I was crazy. (But let's be honest, that's nothing new.)

Miracles

On the drive in to MD Anderson this morning we prayed that God would guide us through the day and that He would prepare us for whatever He had planned for the day.  But as it turns out, we were not prepared for what He had planned.

The very best-case scenario we had been expecting for today was news that the doctors had a plan C prepared despite the fact that tumors had been growing (again) while on chemo.  We're feeling the pressure of running out of good (or really any) chemo options combined with the fact that my tumors had apparently been getting resistant to yet another set of drugs.  We honestly thought we'd be facing a difficult decision about whether to try pre-operative radiation or yet another set of increasingly ineffective chemos.

It just goes to show how small our expectations are, how little faith we have in God accomplishing miracles.  We're very thankful that so many of you who are praying for us apparently aren't afraid to "swing for the fences" and pray for the big miracle, because that's what we got today.

If you remember the post from just before Christmas when we got really bad news at MD Anderson, there was a moment in the doctor's office when I expressed in despair that "God has decided not to answer all the prayers, not to heal me.  He's not giving me a miracle".  Then we had a miraculous encounter not five minutes later when a stranger, seemingly speaking directly from God, prayed over us and said "God, let this woman have the faith to know that You still perform miracles".

Today that story came full circle after we got our amazing news.  I couldn't help but think of my despairing cry from just a few months ago, "God's not giving me a miracle", made in an identical room to the one we sat in today. As one of the nurses left the room, as the door was closing, she said three simple words that captured all of our temporal turmoil and all of God's steadfast faithfulness over the last few months.  The nurse's words came to us as a renewed battle cry, as if God himself was issuing a response to my desperate cry from a few months ago:

"Miracles do happen."

Tuesday, February 24, 2015

Prayer Map - Take Two

Last time we had a prayer and fasting day, folks let me know they were praying for us by submitting their names and locations in the form below. Then I took the submissions and put pins on a giant map in my kitchen nook. It is awesome eating my breakfast each morning seeing all the people across the US praying for us- so cool!

If you or someone you know is thinking of us, enter the name of the person/family/group/church and where they are located. I want to have to buy more pins! And I promise when we get back to Dallas this week I'll finally post a picture of the map. It's sweet.

Monday, February 23, 2015

Nostalgic Cache

Last October, a stranger reached out to me saying that our story had made its way to him and his wife, and God had laid it on their heart to bless us by offering what they do as a for-profit business, to us, completely for free.  Crazy, right?

So what do they do? God has blessed this couple, Andrea and Bennett, with the gift of storytelling. Imagine traditional annual family portraits from the 90's meets the video technology of 2015. Imagine the videos you save for posterity being artful: not two hours of Christmas-morning-present-unwrapping-that-no-one-wants-to-watch, or just a bunch of disjointed 30-second videos on your iPhone. Imagine a video that perfectly captures this moment in time of your family. Imagine a video that records the memories that you are always trying to close your eyes and remember forever, knowing that they will fade with time time.

This couple offered to do all of the work pro-bono, but they needed $650 to fly from their home in Tennessee to our home in Texas. They reached out to several of their family and friends and within minutes had the trip more than paid for. God was all over this.

We had an amazing weekend with them. They are the most precious couple you would ever want to meet. The Holy Spirit just radiates through them. 

The first of four videos from the weekend has now been published. I couldn't wait to get this posted so I could share with you how very talented this couple is.  We are thankful for the crazy generosity of Andrea and Bennett (and people in their network we don't even know). Brad, the boys, and I will treasure this beautiful snapshot of this season of life for forever.


Range Family from Nostalgic Cache.

If you or your family would like a similar video made, check out their website. They are ridiculously talented and just simply amazing people- you'll love working with them.




A Change of Plans


My cancer journey has been filled with the highest highs and the lowest lows. This past week I've experienced both one of the best mountain tops of the journey, as well as one of the most disappointing valleys I've had in a long time. My last post Her Heart is Full of Joy was a glimpse into how amazing I've been feeling the past few weeks- so much hope, and excitement, and joy. Last Friday, however, was something slightly different.

I'm So Excited

This is an excerpt from a post I had started about a trip we were scheduled to be on this week:


Hi, my name is Ashleigh and I'm going sailing NEXT WEEK!!!

Brad and I had been discussing taking a vacation someplace warm and relaxing for a while. After talking with my doctor and my other IBC contacts/friends, everyone was encouraging us to go as soon as possible, while I was still feeling good. I found a trip that looked pretty good on Monday and the got all the approvals needed (parents to watch the kids, doctor, travel agent to see if there was still space, etc.). On Tuesday, I reached out to a friend at my first job (worked there 2007-2011) who had been asking what my old coworkers could do to help our family out. We thought maybe they would be willing to help with the cost of the flights since they all have millions of frequent flier miles (I used to work in consulting and travel for a living), or maybe help pay for an excursion or two on the trip. By Wednesday, through the extreme generosity of my former coworkers, the entire trip was paid for. In 48 hours the idea was birthed, paid for, and booked. How crazy/amazing/wonderful is that? 

All that to say, pray for my folks next week as they so graciously watch my kids all week! They are so incredibly kind to allow us to go away, relax, and hopefully get our minds off of cancer for at least a short while. Woooohooo!!!

This will be me in a week!! (you know, with a little less hair...)
...

As you can probably deduce, I was a little bit excited about the trip. I went out and bought new bathing suits, sandals, outfits (you know, because none of my clothes fit...dang steroids) - essentially everything you could possibly need for a week in paradise. I even bought a full body UV 50 swimsuit for snorkeling, a very wide brim hat, and fancy Japanese high SPF sunscreen. The bags were packed, we were ready to go!
If only I was going to look this cool in my full-body UV swimsuit.

A Change of Plans

Then this week I could feel my tumor starting to grow again. I wasn't sure if it was just in my head or if it actually was growing. David and I went in for imaging in Dallas to check. During the mammogram, the nurses watched David- he was a hit! During the ultrasound he kept making raspberries with his mouth- he was able to keep the mood light. :-)

Strike a pose before the ultrasound!
I asked the radiologist to do an impossible task- tell me if my tumors are growing with no prior imaging to compare with, since all of the images from my past scans are down at MDA. It was extremely difficult to get a read on how large the primary tumor was.

The next day I met with my Dallas oncologist (who I just love, have I mentioned that recently??), and she agreed that the primary tumor had indeed grown.  We had three options 1) Continue with my current chemo, do my infusion as planned that day, and go on my trip, 2) Don't do chemo that day, go on the trip and then go to MDA and switch chemos when we return, or 3) Don't do chemo, cancel the trip, and go to MDA asap to pick out a new chemo.

My oncologists in Dallas and Houston pow-pow-ed and the MDA oncologist said definitely don't do another round of the same chemo if the tumor is growing because it would delay the start of a new chemo by three weeks. He did say I could still go on my trip and just come down to MDA when we returned, but you try enjoying a vacation watching your tumors double in size each night- ha! I know that if I came back and found out my cancer had metastasized I would never, ever forgive myself for going on the trip.

Cancelling the Trip

In the end I asked my Dallas oncologist what her recommendation would be if the trip didn't exist and she said hands down- don't do chemo today, go to MDA for scans and a consult, and start a new chemo asap. In the office with her last Friday, the decision was clear. The choice was so obvious, I felt like I wasn't even making a decision.

So that is what we are doing. Next week's trip has moved from the Caribbean to Houston. I will have an ultrasound, MRI, biopsy of my thyroid (it popped up on the PET scan at Christmas, just making sure it isn't cancer), a PET scan (to see if my cancer has spread), and then meet with the oncologist to figure out what to do next.

Our Reactions

Brad handled the news very well. He said he would rather have a shot at me being at our 10-year anniversary trip than go on the trip and possibly ruin any chances of that happening. I logically know that cancelling the trip was the right decision, but I was very sad about it.

I'm sad because it was a much needed time to relax, sleep in, and rejuvenate ourselves and our marriage for more steps in this journey. The setback before Christmas of my tumors growing through six months of chemo was like finishing a marathon and someone saying, "Just kidding, this isn't the finish line, you have six more miles to run." Now I feel like someone just kicked my shins and said, "Okay, now keep running!"

I'm sad not only about the trip, but the fact that we are once again, looking for another concoction that ["cross your fingers!"] may or may not work. All the while, we are quickly going through the list of drugs available for my hyper-aggressive version of triple negative breast cancer. If and when it does metastasize it feels like we will be out of quality options for treatment. And I've looked in the pipeline of clinical trials to see if anything looks promising for TNBC. Not a single TNBC trial is in a late phase.  A late-phase trial is where they are doing more than just shot-in-the-dark experimentation, where the drug in question seems to be effective and is close to FDA approval.

We will take that trip soon- I know it. But in the near-term, it's time to gear up for some long days at MDA...

Friday, February 20, 2015

Her Heart is Full of Joy


Her heart is full of joy with love,
For in the Lord her mind is still.
She has renounced every attachment
And draws abiding joy and strength
From the One within.


She lives not for herself, but lives
To serve the Lord of Love in all,
And swims across the sea of life
Breasting its rough waves joyfully.

-Saint Teresa of Avila

One of my first posts on Facebook after my diagnosis was the poem above by Saint Teresa of Avila.  It's beautiful isn't it? I don't even remember how it came to reside in the notes pages in the back of my Bible, but sometime in Jr. High it made its way there. It is an inspiring picture of what a Godly woman looks like in daily living. 

Someone must have been praying since my last post "Losing HOPE" because I have been overflowing with joy this past week. There is absolutely nothing that could get me down. It probably helped that I was excitedly awaiting Discipleship Now/Anomaly weekend with the church youth group this weekend. 

Anomaly Weekend

This past weekend our family hosted 9th grade girls for a retreat at our church. As youth, Brad and I attended an annual church retreat called Discipleship Now, where instead of going to a camp someplace in the woods, we stayed at "host homes" in-town. When we were first married we volunteered as "group leaders" where we would guide the breakout sessions and help connect with the youth in the church. We always said we wanted to have a house big enough to be a host home someday. Since we just moved to the suburbs of Dallas, we finally could be a host home this year!

Speaking @ Anomaly

The youth minister at our church heard us give our testimony to a small group of people one Sunday morning and thought it would fit in with the theme of the weekend. He asked us to speak in front of 200 teens and leaders on Saturday morning of the retreat. We love getting to share what Christ is doing through this trial. It is encouraging to us to be able to remember and say aloud what we know to be true about the God's character.

At the end of our little talk, the youth were asked to come up on the stairs and in the aisles, kneel, and out-stretch a hand towards us. Then they all prayed aloud all at the same time. I started sobbing. It was an incredibly moving moment. You could hear kids all around us crying too. It was a very impactful time of prayer.

Our 9th Graders Rock!

We had the most amazing group of girls. They were all very spiritually mature for their age and you could tell they wanted to grow deeper in their walks with Christ. On a less spiritual note, it was a TON of fun hanging out with them. We stayed up late watching Pitch Perfect (it was aca-awesome!), I got to do all of their hair (since I've had none to play with the last six months!), and they played with our kids (potential babysitters??). I felt like I was a kid again, until I had to wake up for church after only a few hours of sleep and I didn't just bounce out of bed as the other girls did. At one point in the weekend we realized I was a freshman in high school the year they were born (2000). I'm officially old, but at least my hip teenage vernacular has been refreshed - I now know what "totes for reals" means. So I've got that going for me.

We made Valentine's Day cards for a nursing home they visited for their service project.
[aren't they totes adorbs??]

We roasted marshmallows and sang around the campfire:
video

I was so sad when the weekend was over. I just love having my house full of people! I'm already looking forward to next year!!

Sunday Morning

To top off this crazy-amazing week, we had the most impactful service this morning. Our Bible Fellowship Group (BFG=small-group at church) leader, Bill, stood in front of the church during both services and read this two page speech about us. (crazy, right???) Then the Pastor spoke a little on prayer/fasting for us on March 12th. The whole church has been challenged to fast for us that day when we are back at MDAnderson getting scans. Then my friend's dad (the friend that had breast cancer when she was 25), prayed for us.  Have you ever seen a 2000+ person church do something like that for a single prayer request? I have not. 

It was somewhat surreal to be sitting in the pew while Bill read about us and our picture was up on the huge screens at the front - I kept thinking, "Man, I definitely need to pray for that Ashleigh girl they are talking about..." Oh wait, they're talking about me.

On top of all that craziness, we were pulled out of our BFG class to help counsel a couple that was visiting our church. The husband told his wife they should get in the car and he ended up driving to our church. (She didn't know where he was taking her, so she actually still had her house shoes on- how awesome is that?!)

She was diagnosed with breast cancer this past fall, had surgery four weeks ago, and starts chemo in a week. It was a totally a God-thing for them to come to our church and for us get to spend time with them, listening, praying, and sharing what we've learned through this journey. They were struggling with all the same things we have been through - worry and fear about the future, stress on the marriage, depending on our spouse for support instead of Jesus, and pretty much everything else I have shared openly about on this blog.

Let's Wrap It Up Folks

God is cool isn't He? He takes this big, ugly, life-threatening cancer and He turns it into something beautiful. How many blessings and miracles did he perform in just this last week? I think there is material for at least a dozen balloons in this last week alone. No wonder it is so easy for me to find joy this week. Look how He is moving. Look at all He is doing to comfort us. Look at the people around us being touched by what should be a terrible thing. That. Is. Jesus. 

And that, my friends, is how I can "swim across the sea of life, breasting its rough waves joyfully."

Tuesday, February 17, 2015

Devotionals

[I may or may not be blogging right now as a way to avoid picking up the eggs Noah flew on the floor this morning during breakfast...that can wait, right?]

In church you always hear,"You need to do your quiet times!" For those that have not grown up in Protestant church, this entails reading the Bible, praying, and spending "time with God". I've never been the best about this. I know I'm supposed to do them but something always seemed more interesting than spending even just five or ten minutes reading the Bible. You know like facebook, the TV, to-do's...you get the idea.

Why is it so hard for Christians to remain faithful in reading the Bible? Maybe it seems kinda boring? In this day and age it is one of the few things that isn't actively jumping out to entertain us like the TV and internet does. Maybe because it can be kinda convicting? Reading the Bible a lot of times reveals places in our heart and mind that aren't fully committed to Christ - places where we aren't doing what God wants from us.

If I was to be brutally honest, I think the biggest reason I wasn't always faithful in spending time with God each morning is that I didn't feel like I really HAD to, to get through the day. My days were actually pretty OK without doing it.

Now looking back at who I was just six or seven months ago, I'm so embarrassed. The prideful attitude I had towards my coworkers, the things I thought and said about myself to my friends, the way I sometimes treated Brad- none of that reflected Christ, or how He wants me to live. So while I thought I was "OK" without getting into scripture every morning- my heart, words, and life didn't line up with how Jesus instructs us to live.

Today is a different story. I can barely get through a day without first opening the Bible. The fear of dying of this disease essentially overtakes my heart and thoughts if I don't lay it all down at Jesus' feet, every. single. morning.

The scripture from today's devotional was this:

"But my eyes are FIXED on you, O Sovereign Lord, in YOU I take refuge- do not give me over to death." - Psalms 141:8

It's the perfect verse for me today. It's so neat how the Holy Spirit is able to speak through the scripture to help you with the burden you have today.

My challenge to Christians reading this blog, is to learn this lesson without being faced with a life-threatening trial yourself. Dig into God's Word- it will change your heart, your day, and ultimately, your life.

Sunday, February 8, 2015

Losing HOPE

Losing HOPE

Brad and I went to college in Georgia where the state lottery funds a very generous scholarship program to in-state high school graduates. With some pretty basic requirements met, you can get your full tuition paid for, to any in-state school, through the HOPE scholarship program. The only catch is you have to maintain a certain GPA to continue receiving the money.

At the North Avenue Trade School (where we attended), the general consensus was that it was easy to get in but it was difficult to stay in. The classes, especially the introductory ones that everyone had to take (I'm looking at you, Physics 2), were ridiculously hard. I can remember not leaving the dorm for a whole weekend just to study for a biology mid-term. There was one class where I had a 32/100 grade but that constituted one of the few A's in the class.  There was a class Brad took where the curve was constructed so that you could be in the top quartile of the class with a D (don't think too hard about how he knows that).

Needless to say, there was a significant percentage of students that couldn't maintain the GPA standard and lost their scholarship. Folks around Tech would call that, "Losing HOPE"- hilariously tragic for its double meaning.

Reality

I've been having a difficult time recently, grappling with the non-insignificant statistics around my diagnosis and (limited) response to (now six) different chemotherapy drugs. The first drugs they give you are the strongest and most likely to be effective, then they move to other well-proven drugs, but with less potential effect. There is a finite list of drugs the FDA has approved for triple-negative metastatic disease, each with varying side effects and efficacy.

The goal of chemotherapy is to mess with the cancerous cells' ability to replicate thru screwing with the cells' DNA, RNA, or other biochem mumbojumbo I don't really understand. For me, because my cancer cells have such a high proliferation rate (aka they multiple very quickly), my cells can adapt to the destructive mechanisms being thrown at them thru the chemo. What I have experienced so far is a lot of benefit at the beginning of the chemo regimen, but by the end, I can feel the tumors/lymph nodes growing again.

I read today that the median survival for someone with triple negative metastatic disease is 13 months. That means half of the women live longer than 13 months, and half pass away before 13 months. And I'm seven months into that number with six of the best, highest-potential drugs down.

Hope

This week, a Bible study I have attended off-and-on over the last five years, held a session specially for me and one of my friends who is also facing a tough cancer situation. We went over scripture that involved the "testing of our faith". The timing could not have been more perfect as I wrestle with my "impending doom".

There is this immense tension inside me at the moment. There is part of me that absolutely hopes and wants and believes for a miracle of healing and many years spent with my family. But there is the realist in me as well that says, set your expectations low and you'll never be disappointed. At the beginning of this journey I had this crazy peace that everything was going to be fine. That beyond a shadow of a doubt I was going to make it to the other side of this, beat all the odds, and go on a speaking circuit. But more and more recently, I feel like there is no realistic way to get to that happy ending. That I shouldn't be so foolish as to think that history won't repeat itself; that I'll somehow be different than the many patients before me with less aggressive cancer.

Today

With all that being said, I know what God wants of me right now, today. I know that it actually doesn't matter what the outcome of this journey is- life or death. He calls me to be faithful, today. He will give me grace for today. I am supposed to reflect Christ, give Him glory, and be faithful in the little things of life, today. So for me, that means getting up when the baby cries at night, feeding my toddler breakfast, and changing lots of stinky diapers.

So while I may be "losing hope" (as we used to say in college) for a total and complete recovery and a cure from cancer, I'm not losing the hope required to living today well and to its fullest.

"Each time he said,"My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me."
-2 Corinthians 12:9 NLT

Lord, I trust you with my life- no matter what the outcome. I know you work all things together for good to those who love you and who are called according to your purpose. Today I make a choice to trust you in every detail of my life including the outcome of my cancer treatments.

Friday, February 6, 2015

Happy 2nd Birthday Noah!


Two years ago on Jan 25th, Brad and I were living in Boston (in a 500 sq ft dorm, no less). My water had broken that morning but the midwife said I would probably have to be induced that evening. We hadn't purchased a car seat yet so that afternoon, we drove to Babies R Us and got us a car seat. The checkout lady asked when I was due and I replied, "Now-ish."
Right on time
That evening my whole life changed as we welcomed Noah James into the world. He was named for two of his great-grandfathers that Brad and I both loved and adored. Our world has never been the same. Our hearts grew ten-fold and we loved like we never knew we could love. 

How precious was Noah?? :-)
I was finishing up my graduate work and Noah was my little helper.
My little helper
Noah came two weeks early, which was a huge blessing because on his due date the city was shut down with a blizzard. It was actually illegal to be driving on the roads.
I swear we aren't bad parents...
Yes, that is my two week old in the snow. No, it was not my idea. Yes, my husband is crazy. And yes, we think he is fine now. [Brad's ninja edit: the idea was to make a baby snow angel!  How cute is that, right?  You're supposed to show the picture of two big adult snow angels next to a baby snow angel, not show the "in process" picture that makes it look like we abandoned our baby in a snow bank.]

Noah's Party

To say we have some stuff going on right now is the understatement of the century. I figured there was no way we were going to pull off a party for Mr. Noah. Have you seen the standards on pinterest and facebook that toddler parties have to meet? I read about one with a 75-animal petting zoo. One I went to had actual hubcaps on the wall as decorations for a Cars-themed bday party. Clearly, I don't have the bandwidth for that, so I figured a party was off the table.

But then again, I am sorta crazy, so on top of my parents moving, having a film crew at our house all weekend, my MIL flying in, speaking in church that morning, leaving for our trip to MDA that afternoon, and seven months of non-stop chemo, I decided to throw a minor gathering. 

For the decorations, I bought all three things in the Cars-themed party supply section of Wal-mart.  The cupcakes were from the grocery store, and all the food served was from Costco's frozen section- but by golly we had a party! And it was fun!

Happy 2nd Birthday Noah- we love you SO much!


Stage 1 of Cake Destruction
Stage 2 - As one friend put it, you haven't truly celebrated until you have cake in your hair.
Stage 3- I might mention that black icing was seen again a few hours later. We were half-way to Houston at that point and my poor MIL had to deal with the fallout of Noah eating an entire cake...sorry Jane!
After everyone had left and my wig came off! Crazy hair for a mama!