Sunday, March 22, 2015

A Great Sunday

I had a great day today- can I tell you about my day?

9:15AM - We were invited to speak at our old Sunday School (small group of folks that meets before the main worship service) at First Baptist Dallas. We told Noah we were going to the BIG church downtown with the BIG buildings- he was really into it.

I almost made it through the whole talk without crying until someone asked, "What do you think about the possibility of meeting Jesus, very soon?" Which is funny. I always think about leaving this earth and being sad about leaving my family too soon, but I never think about what I would be moving towards in exchange.

My tearful answer to the question was, "I think it would be like meeting a pen pal for the very first time in the airport. That I would be really excited about finally laying eyes on this person that I've talked with on the phone, and written countless letters to, but had not actually met in person yet. It would be wonderful."

And it will be.

I loved this man's faith. It challenged me to not dwell so much on being sad about dying, and instead, be really excited about finally meeting Jesus face-to-face. That man, whose faith, much larger than my own, said that he was jealous that I had this opportunity to go home so soon and be with the Father. Wow- Lord, increase my faith to be like this man. Please increase my desire for the start of an eternity spent with you.

10:45AM - We pushed repeat on our little song and dance we've gotten used to doing, this time for my parent's Sunday School. The jokes seemed to fall a little flat at first. I'm not sure if they knew it was okay to laugh with us about having cancer. I often say if I didn't laugh about it, I would cry, and laughing is way more fun.

In this class, a woman came up to me afterwards and told me that her and another friend fasted for me for THREE DAYS. THREE DAYS!?!? for a STRANGER!! Don't you start to essentially die at that point?? I can barely fast for myself on the "fasting" days. How much spiritual and physical discipline does it take to fast (from food) for three days for a stranger?!! Props lady- you kinda rocked my world this morning.

The best part of talking with this woman though, was what she said was revealed to her during that experience. God had impressed on her (and her friend) that God was indeed going to heal me. That no matter how bad the odds got- even down to 0.0001% that He was ultimately going to cure me and that I would live to proclaim the great miracle done in my life and body. She is invited over to my house anytime! I want to hang around her more!!

12noon - Our old Sunday School class held a potluck in our (and another friend's) honor. My folks came to help corral the boys (thanks mom&dad!) so we could focus on hanging out and fellowship-ing (this is code in the Baptist world for eating, and talking, in that order).

2:30PM - Family nap time. 'nough said.

5:30PM - We were all hanging out in the front lawn (pulling weeds/playing) and a nice looking, smiling lady pulled up to our house. I didn't realize we were getting a "helper" tonight, but she walked right in and started fixing dinner, cleaning up our house, washing our dishes, folding clothes- you name it, she did it. The best part was she encouraged me to go back outside and continue enjoying the beautiful weather and spending time with the kids. Ah-mazing.

6:30PM - We were still outside playing and another nice looking, smiling couple drove up. They had been our "helpers" a couple weeks ago right after my surgery. They were dropping off a beautiful quilt a church ministry had made me, but stayed and played with Noah, held David, fed David, and ended up even bathing David. We had an army of helpful, enjoyable people at our house all evening!! (Admit it, you are a little jealous, right?) ;-)

8:00PM - Groceries magically appeared at my house from a middle-school friend. She had taken our grocery list and gotten everything we needed for the week at the store and brought them to us. She hung out, laughing, talking, and eating cheesecake. It was wonderful!

10:30PM - After a full 12 hours of talking with people, I am so encouraged, energized, and just simply content with my beautiful, full, and crazy life. 

Thank you Jesus for giving me beauty for ashes- in a time that should be sorrowful, you give me joy. My cup runneth over- you've given me more than what I need to get through this time of trial. Thank you for filling my life Lord to the point where I fade away, and all that is left is you.

"To all who mourn in Israel, he will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. In their righteousness, they will be like great oaks that the LORD has planted for his own glory." - Isaiah 61:3

"You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows." - Psalm 23:5

"But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed." -2 Corinthians 4:7

Tuesday, March 17, 2015

MDA Post-surgical Visit(s)

My apologies for taking so long to get this update out there after our last visit to MDA. I know many folks from my church were taking the day on March 12th to pray and fast for us- thank you to everyone that made sacrifices to keep lifting us up to the Lord in prayer. Surely we've gotten annoying enough by now for God to just say- "Okay, okay, enough already, I'll go ahead and heal her!" (See: The Parable of the Persistent Widow from Luke 18:1-8)

The day at MDA on March 12th was difficult. We go into these days with so much energy, heart, and hope and always leave empty, broken, and defeated. It was another gruelling day filled with reminders of my reality. We hopped from appointment to appointment with no breaks in between - not even enough time to grab a water bottle or food; so by the end of the day, I could barely walk to our car. I was tired from sleeping poorly the night before, hungry from not eating all day, dehydrated from not drinking any water, and in pain because I was out of my pain medications. So if you add even a little bit of bad news to that equation, of course you are going to get an emotional Ashleigh.

The first part of bad news was the pathology report. The "path report" is a summary of what the pathologist found when he or she looked through a microscope at the tissue removed during surgery. Here is the good news: my excellent (and aggressive/conservative) surgeon completely removed all of the tumor(s). They call this getting "clear margins". It means that where they found active cancer cells in the tissue, there was more than 1-2 mm of healthy tissue beyond that. In my case there were "wide margins", meaning even greater than just a few millimeters of space.  This means that after the surgery there was no left-over tumor material.

The bad news of the path report concerned my lymph nodes. They removed all the lymph nodes they could find in my armpit (called the axilla). Out of the 34 lymph nodes they removed, TWENTY-SIX of them were positive for cancer. The most I've heard of anecdotally from other IBC patients is maybe 16 or so. So the 26 number just blew my mind.

The number of positive nodes is the best predictor of likelihood of recurrence, and if you have a recurrence (the cancer comes back after treatment), then you are pretty much dead meat. The number of positive lymph nodes is a proxy for how much cancer is still floating around in your bloodstream/lymph system. Those "circulating tumor cells" or CTCs are looking for a place to land  - like your lungs, liver, etc.

SO, all that to say, because 26 of lymph nodes were positive, I have a boat-load of cancerous cells still floating around in my system looking for a place to land.

When I got this news, I whined to my doctor, "So this means I have 100% chance of recurrence and am going to die in 2-3 months from now!" He said, "No, in 5% of cases, the CTCs have trouble landing in a place they didn't originate from." You heard it here first folks- I've got a 5% chance of not dying in a few months- woohoo!!!

The second piece of bad news was about the drains. If you've ever had a drain, then you know what I'm talking about. If you've never had a drain, you don't want me to talk about it. Because drains are disgusting. I leave it at this: I was expecting them to be removed, then they weren't removed after all, and I was sad.

I did a quick visit with my radiation-oncologist (uneventful) and then to psychiatry. Going to psychiatry and not just the psychologist makes you feel especially crazy. You know, more than the normal, "haha-crazy", but the "maybe-you-should-be-somewhere-with-padded-walls, crazy". I'm fairly certain it is just a technicality that the MDA pysch people are called one thing and the UT Southwestern pysch people are called another. The difference just makes me slightly uncomfortable (please, Brad, don't send me to a home!).

As I mentioned, by the end of the day I was utterly exhausted. And then we drove home to Dallas. I'm so thankful that a) Brad was driving and b) he stayed awake, because Lord knows I sure didn't. Every half hour or so I would awake and yell, "BRAD, YOU OKAY?" Finally, he said,"Why don't you just go to sleep honey."

Today's appointment at MDA was MUCH happier than my first post-surgical visit. It was everything I hoped my first appointment would be. Essentially the highlights are: I got my drains out (praiseyouJesusinHeaven!) and I my radiation simulation is scheduled for two days from now.  I have no idea what all that entails, but woohooo!!!!

Wednesday, March 11, 2015


Quick (totally shameless) question for the crowd: Does anyone have an "in" with Pentatonix?

We have tickets for their concert on March 29th at Verizon Theater in Dallas, TX. They are my absolute favorite group. We went to their concerts in Boston, MA and Allen, TX and they have been by far my favorite concerts I've ever been to. At the end of the concert I was ready for them to do the entire set over again. I bought their Christmas album this year and played it on repeat until my family finally begged me to play something different. Their music just never gets old to me.

Part of my obsession stems from the fact that Brad and I met through a cappella. Have you seen Pitch Perfect? It was like that- literally. I saw Brad sing at Georgia Tech while I was still a senior in high school. He was in the men's a cappella group- Sympathetic Vibrations. I told myself I had to get in the girls group so I could meet one of those guys. Sure enough, I got into the girl's group, Nothin' but Treble, met Brad and his gorgeous voice...and the rest, as they say, is history!

So now I'm hoping, wishing, praying that maybe I can meet Pentatonix when they are in town. Anyone have any ideas of how to try and make that happen??

Either way, it looks like I'm probably going to be alive March 29th (which I wasn't sure about when I booked the tickets), so I'll get to see them in concert even if it doesn't include getting to meet them! I can't wait!!!!!!


Monday, March 9, 2015

Day of Prayer and Fasting - March 12th

For those that have been with us since the beginning of all this craziness, you might remember one of my sorority sisters organized a day of prayer and fasting for our family back in July. Our church has organized another one for March 12th this week (thanks Lisa for the pic above! Note: the balloons are a reference to a vision that I have for 4ish years from now).

We will be back at MD Anderson this week on the 12th for meetings with my oncologist, surgeon, and radiation-oncologist. I honestly have no idea what the plan going forward is going to look like. It is actually a little exciting to see what they come up with for me!

There was a request for an extended list of prayer requests to help guide those that choose to pray and/or fast for us that day that you can find below. Brad wrote a note about fasting to explain it last time to those not familiar with the practice- you can read it here.

It is always fun for me to see who is praying for me (especially people that I don't even know!). There is a prayer map I keep pins in for all the locations where folks are praying. You can enter your info here.

Thank you for taking time to lift our family up. I believe God hears your prayers and is working a miracle in my life/body/cancer. Thank you!

Prayer Requests 

+Protection against circulating tumor cells landing and growing in any of my organs, bones, or cross lymph nodes/left breast - NO DISTANT METASTASES
+That I would be completely and totally healed of cancer- that every single cell would be destroyed through my cancer treatments- that I would get to live a long life serving my husband and kids
+My surgery and drain incisions would heal rapidly and without infection
+Wisdom for my team of doctors (oncologist, radiation-oncologist, surgeon) - that they would create the most optimal next steps for my treatment (start radiation, more chemo, chemo/radiation, something else/radiation, some other novel thing I've never even heard about, etc.)
+If we do go to radiation next, that the radiation team would create the best plan that maximizes cancer cell destruction while minimizing toxicities to my surrounding organs (particularly lung and heart)
+If we do go to radiation next, that the doctors would have wisdom on when to start it versus waiting for my wounds to heal more
+That I would handle the news of the surgical pathology report well - and that we get good news! 
+That I would not worry during this time of healing and being off chemo, that I would have no anxiety about the cancer spreading during this phase

+Brad would be healed of his bronchitis quickly
+Brad would have energy and health to do all that he has to do to keep the house running/kids alive
+Brad would be able to focus and do his best at work while working from home and soon working from Houston
+That my marriage would be protected from the stress that our current situation brings- that communication, service to one another, and love would be overflowing in our lives
+Noah and David would continue to grow, be happy, and healthy
+Noah and David would be unaffected by the changes in caregivers, schedules, and just the general chaos from a mom going through cancer treatments

+Strength and energy for those closest to our situation- that they would not get caregiver burnout (Parents-Jim & Bekke, Jane & Alan, Leadership of BFG, close friends, etc.)
+That blessings would be poured upon every person that has allowed me space mentally and physically to heal through: doing my dishes, laundry, getting my kids ready for bed, watched my kids from their house to allow me to rest, etc. etc. etc.
+That the logistics around the ever-moving target of my treatment would be worked out and that those helping us and providing housing would be understanding to our dynamic needs and schedule

+That the lives of those praying for me would be blessed through an improved prayer life, a strengthened relationship with Christ, and more spiritual awareness of the needs and hurts of those around them
+That my good friends (and people I don't know that read the blog) that do not currently believe in a God or Christianity, would see the miracles in my life as a testament to a living and loving God that wants to have a relationship with them, that opportunities would arise to have winsome conversations about what the Bible says life after death looks like
+That my thoughts, words, and actions would reflect Christ and have an impact on every single person I come in contact with, especially those I come in contact with through my hospital visits
+That God would use our family, my cancer, and our lives to be a ministry and that the ministry would be used in whatever way He sees fit

Thursday, March 5, 2015

My Life is Pretty Awesome

Where do I even begin this post today.......God, my family, and my friends are all SO AWESOME.

Recovery back in Dallas is going swimmingly. The pain meds prescribed to me are doing their job (as long as I remember to take them on schedule). The wounds seem to be healing as expected. My church family, family-family, and local friends have stepped up in out-of-this-world ways to care for my every need.

Thank you Lisa for watching my baby!!!
Here's my set-up in Dallas: each morning someone picks up David and cares for him in their home (since I can't lift David up to change his diaper, lay him down for naps- nothing). Brad takes Noah to school like normal. I'm home by myself blaring a cappella music, writing thank you notes, sleeping, taking pain meds, and generally being in my happy place (the pills help with that too). My mom is an RN and has been over during the day to help me with drains, moving around the house, getting cleaned up, etc. Someone delivers a healthy protein/fruit/veggie-packed dinner. Then the kids come back home after Brad finishes work. That's when another angel comes over and helps Brad with the kids' nighttime routines- eating, baths, getting ready for bed, cleaning up the kitchen, moving laundry along, etc. I've been napping the last few nights as I start to crash around 5/6pm.

Now do you agree?? My life is so stinkin' awesome right? All I have to focus on is resting, healing, and writing thank you notes for the millions of people that keep sending me awesome gifts!!! [Side note: if you've sent something and haven't received a thank you note, please let me know, I'm afraid sometimes things fall through the cracks or arrive without a packing slip and I don't know who to thank- so let me know! It will help me sleep better at night- you would be doing ME a favor if you let me know you haven't received a note yet.]

Today was especially awesome (I need to find a new word for awesome, but everything really is SO AWESOME). It snowed a million inches overnight (you know, a million for Dallas, stop laughing friends from Boston reading this!), and Noah's school was closed for the day. Brad had a bunch of work he had to do, and when you work remotely, the office isn't "shut down" and no one gives you a "snow day" from work. If I can't lift/take care of David, I REALLY can't lift/take care of Noah. We were sorta looking at each other last night thinking "we are so screwed for tomorrow". But guess what? The sweetest couple drove over in the snow in their truck, picked up BOTH kids and took them to their house to play for the day. Who does that?? On one of their few days off, them both getting off shifts as nurse and firefighter, coming to our house to care for our kids all day- that is the love of Jesus right there people. Seriously.
Reading to David while building a tent with Noah- mad skillz.
Building a snowman while taking care of our kids
Noah loves eating ice!

Then another really sweet aspect of all this is that I'm not coordinating any of these helpers. Another super sweet and ridiculously competent friend is handling all the volunteers and matching them up with the needs. She even sent me her spreadsheet she has going to make all this work.
Girl after my own <3
All that to say- my life rocks right now and I have ZERO to complain about.

Happy snow day to those in Dallas!