I Feel Alive

The last several months have been surreal.

I’ve typed it out several times now in different ways and every time feels like it’s missed the mark. So let me try again.

I feel alive.

I don’t have cancer. My arthritis is managed. My brain is functioning fogless.

And I feel alive.

Let’s talk about answered prayers for a moment. There are so many of you who have taken my name before the throne of God and begged for healing, begged for treatments, begged for life.

God heard you. God healed, treated, and restored.

I know it doesn’t always happen that way, but against all odds it did this time. I don’t know why other than to say that I am totally aware that I am not the one in control of my life, and I’d like to keep it that way. I’ve seen the parts of my story that I did not plan have the most impact on people because clearly God is at work.

It’s a miracle and a gift and a blessing just to be alive and I do not take that for granted.

This spring I was able to go to NY and film a little ditty for the Conquer Cancer Foundation with my amazing oncologist. Turns out that little ditty is running on a national TV ad campaign right now, so you may see it while you watch your Hallmark Christmas favorites! This was a humbling experience for me. I was on 20mg of prednisone when we filmed, so my face was puffy and I had gained weight and all the horrible things that happen when you’re on prednisone for 4 months. And in those 4 months that I’d rather be hiding in my RV than showing my puffy face, CCF decides they want to put me on camera and then on national TV. That’s some humble pie right there. I’m glad I did it though. I think it was one of the braver things I’ve ever done, deciding that the message was more important than what people think of me and how I look. It’s had a lasting effect on my heart, which was healing in a way all by itself. Maybe all brave things are healing.

We moved into our house in September, and it is amazing! It has doors and rooms and a dishwasher and a full-sized tub (coming from an RV those things are most important)!! It’s off the main road in Fairview in the middle of nowhere across the creek in the forest and I LOVE IT. This house is the answer to a prayer I didn’t know I was praying. It brings us so much peace and calm, and others say it does the same for them. It is our place of constant healing and hospitality that we plan to share with others for many years to come. A true gift from God. I am so thankful.

That’s it for now, but there’s more to come!

Podcast: Finding Hope in the Face of Cancer

Last summer I became connected to a group called the Conquer Cancer Foundation, a branch of the American Society of Clinical Oncologists. My oncologist was awarded a research grant by CCF as she was finishing her fellowship in 2012. This grant launched her career in cancer research and ultimately allowed her to start the pembrolizumab/axitinib clinical trial that melted away my cancer!! CCF is close to my heart for this reason, and I volunteer with them to raise awareness and donations for cancer research.

Together with CCF and StoryCorps, John and I were able to record a conversation about our long and dramatic experience with cancer. They have edited down our 40 minute conversation to about 5 minutes, and it is such a beautiful testament to God's hand working in our lives.

I listen to it now, almost a year later. I hear my slow cadence confined by my brain fog, and I cannot help but be overwhelmed at how far we've come, even from only one year ago! My mind is clearer, my thoughts come faster, my words are easier to find. This isn't what you'll hear- it's just what I hear. You'll hear story of devastation, hope, redemption, joy. That's the story God has given us and the story that I am honored to share with the world.

As we were recording, I couldn't help but share God's hand in my healing, and I am thrilled that those messages made it into the short storyline that was created.

To listen to the clip, visit the podcast below:

iTunes Conquering Cancer Podcast

 

Google Play Conquering Cancer Podcast

The Light At The End Of The Trial: 20 Months Of Cancer Treatment Ends This Week!

Throughout my treatments I have posted on this blog so I can quickly disseminate news and spare myself from having to re-live new news over and over. Well, this time I’ve waited to post on the blog because I’ve received so much joy in telling so many people in person about the next steps in our journey!

Quick recap: I’ve been on a clinical trial of immunotherapy (pembrolizumab) and targeted cancer treatment (axitinib) since May 2016, that’s about 19 months. 9 months into my treatment, about 98% of my diffusely metastatic cancer had melted away! Since then, my scans have plateaued, showing only scar tissue remaining from some of the brain and lung masses, and still slowly shrinking. This is as close to gone as we can expect it will ever be!!

At this point I like to think of it as a chronic illness- Chronic Cancer. Right now, my Chronic Cancer is controlled. In the future if there is regrowth, it will not be that my cancer is back and I have to take chemotherapy. Rather, if my Chronic Cancer flares up, I can go on the meds that control it- just like any other chronic illness. I don’t think I will ever say that I am cancer-free, because on a cellular level that’s just not true. But I know that my immune system now knows how to detect cancer cells in a way that it could not do on its own, and I rest in the hope that my body can now do the job it had forgotten how to do.

For the last 8 months we’ve seen no cancer growth and slowly shrinking scar tissue (good!). About a month ago, 17 months into treatment, I started developing an inflammatory arthritis affecting my knees, ankles, hips, shoulders, wrists, and fingers. Most likely, the immunotherapy has accomplished its goal of helping eradicate cancer (good!) and now is causing some autoimmune arthritis in my poor little joints (bad). AND what that means is that I get to come off of my trial medications 3 months early!!!(AMAZING!)!!!!

So TODAY we are leaving for a couple of celebration days in DISNEY WORLD then heading to Miami for my end-of-trial appointment!!

There’s such a mixed pot of emotions that I’m drawing from right now.

• I am so excited that the experimental drugs that God led us to have worked against my rare and impossible to treat cancer!
• I am so thankful to see how God has taken care of us and written this beautiful redemption story with our lives!
• I am hurting in my joints and walking around like the bug from Men In Black when I am at my worst, and hobbling slowly when I am at my best.
• I am thrilled to be able to be a part of the data for these amazing drugs. There isn’t evidence for when to come off of pembro for sarcoma patients, so hopefully my case can contribute to that body of knowledge.
• I am pumped out of my brains to get to take my amazing husband and 4.5 year old sweetie to Disney World!! This has been hard. So hard. We made it through in God’s care with his strength, his daily provision, his children so readily helping us along the way. And he’s given us such hope! But it’s still been hard. And when you do something hard, you CELEBRATE when it’s done!

I’m honored that so many of you care about my family, care about my story. My cancer isn’t gone, but it’s controlled and chronic and manageable. I’ve had 4 tumor removals in the 26 year span I’ve known ASPS, 4 times I touted the coveted label of “No Evidence of Disease.” Cancer free. Now I sit with cancer still present, but tamed to a mere carcass of the deadly metastatic threat it once was. The surgeries were the bandaid, immunotherapy and targeted treatment has fixed the actual problem. Not cured, but managed. This is the future of cancer care and I am humbled to be a part of it.

Let's Catch Up! Grab A Coffee.

If I had my druthers, I'd treat every one of you to the quaint little coffee shop in Fairview so we could sit and talk for hours catching up. Since it seems rather unlikely that all of you could make it to our little corner of Tennessee, I thought it best to do our catching up here! So grab a cup of coffee and let's chat.

You might ask-

How is treatment going?

Thank you for asking! You're so thoughtful. Treatment is going very well! I had some hiccups (seizure, rash, hospital), but I've been on the up and up since then! My energy is MUCH better than it has been in the past, probably because my thyroid hormones are more normal now.

The clinical trial is a 2 year program, so my treatment will conclude in May. At that point I am planning to go off my trial meds! There's no way to know if the meds are controlling the disease or if my immune system has learned how to fight the cancer on its own. So I will take a break and see what happens. My oncologist and I have been talking about this possibility for the last year and have both been growing in confidence that this is the right decision when the time comes. Her confidence gives me hope. I don't think about it too much since it is so far in the future; better to do it one day at a time.

This is my cardiologist. Rarely have to see her anymore!

That's so great! You'd reply. And your hair is so curly!! Was it curly before?

Yes it was, but it wasn't nearly as curly as it is now! It was more wavy before radiation and it's grown back as ringlets/curl bomb fro. I love it. I just got it cut this week and I love it even more now that it doesn't resemble a mullet.

How's your house coming along?

We have a foundation! We bought a forest and cleared part of it into a plot and a yard with only big trees. Now the plot has been cleared with foundation and blocks laid. Hopefully it will be done in about 4 months.

So yes, we are still living in an RV! It's starting to feel smaller as we switch from flip flops to boots and squeeze our winter jackets into the closet. We love being so close to John's parents. We are still on the back of their property and enjoy greeting the cows and horses next door as we drive back to our little temporary home.

Are you teaching this year?

No I'm not. I really loved teaching and had the best students anyone could ask for (I'm not exaggerating! An honors elective science class for college credit really only attracts the students that want to be there!). At the end of last school year I felt that I was stretching myself to the very limits of what I was capable of doing in a day. I didn't have much time or energy left over for things like mothering or wifing. So I made a change.

So what are you doing now?

Well. I know what you're asking. You want to know how I'm being productive right? Well, the answer to that question is that I am doing graphic design. Mostly layouts and publications. I just finished designing the style guide and bulletin for our church. I've been doing some posters and custom calligraphy work as it rolls in, and I enjoy it. The work allows me the time that I need to be a mom to a preschooler still at home most days, and provides the brain space for me to be mentally present more of the time. 

But really the answer to your question is so different than the chit-chat answer. While I was giving my most to being a good teacher, it left little presence of mind to care for my family well. Something needed to change. I tapped into my other talents and artistic nature and expanded my design projects. 

So here's the real answer: I am spending time taking care of my family, giving them my focus and attention. I'm sleeping and healing, staying away from unneeded stress. I'm prioritizing and listening for where God will call me next. And while I am doing those things, I do a little design. 

At this point I would say Well enough about me! I've been talking for an hour! Tell me about you! 

You would tell me all about your adventures and your family and your job and I'd be enamored by the beauty of what God has gifted you to do. 

I'm so glad we could catch up!! Let's do it again soon!

Why God Gives You More Than You Can Handle

There are many half-truths circulating around Christendom. Thoughts that started as Biblical truth have been misinterpreted and misremembered so the original meaning is lost and a mere shadow remains in its place. The worst offender in my opinion comes from the truth listed in 1 Corinthians 10:13:

No temptation has overtaken you beyond what is common to mankind. And God is faithful; he will not let you be tempted/tried beyond what you can bear. But when you are tempted, he will also provide a way out so you can endure it."

Popular Christianity takes this passage and says "God won't give me anything I can't handle."

But I say that God intentionally gives us trials that we cannot handle on our own to teach us that HE IS THE ONE with the way out.

Coming to the very edge of what we are capable of handling is scary and humbling. In those scary humbling moments God is there to provide a path of endurance. Often its at the very limit of what I can handle when I am finally humble enough to see the path of endurance that God is giving me. Until that point I think I am still in control, still have a plan, still have it all together. At the breaking point it becomes clear: I never had it in my control in the first place. And then emerges God's path of endurance. God makes the way.

I've had a lifetime of trials that I can't handle. Cancer during pregnancy, metastasis to stage IV, multiple ministry crises in my husband's 5 years of administration, whole brain radiation, experimental treatment, and most recently a simple partial seizure from an old brain met, followed by a diffuse drug reaction to the medicine meant to manage it.

THAT IS MOST CERTAINLY TOO MUCH FOR ME TO HANDLE!

But the story doesn't stop there. With each trial, God provided a path of endurance, a way out so I could endure. In my darkest moments he didn't leave. In my saddest moments he gave me hope that the sadness wouldn't last forever. When death was knocking, he reminded me that death is not the end. God brought his people near, filled my heart with his Spirit, and told me to never, ever, ever give up. Persevere. Endure. The way out.

There WILL be trials beyond what you yourself can bear. There will NOT be a trial that God cannot lead you out of if you let him. If you let him.

EEG Sept 29   //   Drug Hypersensitivity Rash Oct 13   //   It looked like this but RED and all over (that's an arm)

A couple weeks ago I had a simple partial seizure that won me a night's stay at Vanderbilt. The words in my mind were not the words coming out of my mouth. I kept telling John "I'm mixing up my colors" when I meant to say words. My right hand started going numb, (I knew from my years teaching Anatomy that this was Broca's area malfunctioning) so we went to the ER by ambulance.

Neurology decided it was a simple partial seizure. Simple meaning that I didn't lose consciousness, partial meaning only part of the brain was involved, and seizure meaning abnormal electrical activity in the brain. I unknowingly and stupidly raised my seizure risk by fooling with medication and having too little to eat, to drink, and sleep. That combined with the structural abnormality (and whatever other various factors I don't know about) likely caused the seizure.

THEN while we were in Miami for treatment this weekend, I developed a generalized and widespread rash to the medication I had started. So while were in Miami for outpatient cancer treatment, I stayed 2 days in the hospital, stopped and started medications for seizures, and received zero cancer treatment.

I debated whether or not to post this very personal information, but decided that being honest about scary things is important. I was scared, I was angry, and I felt isolated. (Another thing?! Two things?! Really?!!) The fear slowly vanished, the anger turned to resilience, and in the place of isolation I found hope from those who surrounded me. God provided a way to endure when I had too much to bear.

And he will do the same for you.

Why I Chose A Clinical Trial For My Cancer Treatment

A weird thing is happening, and I feel like it is the best practical joke I have ever played. I'm giggling every time I think about it.

In June I spoke at the CCF dinner in Chicago to a group of cancer research donors. The speech was recorded, and many of you visited the site that I shared to watch the recording. Then last month I happened to log on to conquer.org to get some information, and lo and behold my smiling face staring back at me! I shared, and many of you visited the site then.

Well, turns out CCF has a pretty enormous ad buy with whoever is in charge of the internet these days, and if you've been to conquer.org in the past 100 years, my smiling face is there to greet you on ANY webpage you're visiting.

Shopping for fishing supplies? Here's a smile from Brittany. Reading the news? There I am! Researching for a term paper? Well, here's Brittany to keep you company.

Every time I think about it I laugh literally out loud. You can't even check the score of the game last night without my face saying hi and helping you along. Best. Joke. EVER!!!


Joking aside, I really love that I am able to partner with CCF in their efforts to fund new cancer researchers. In our happily ever afters, we so easily forget that cancer can happen to anyone, that none of us are immune. I think a picture of a twenty-something and her little miracle girl convey that reality in a powerful way.

Someone asked me in an interview recently what my reasons were for participating in a clinical trial, if I could expand on the idea of giving to scientific knowledge, and to encourage others to do the same. To be honest, I chose to participate in a research trial because it was my only option. I'd spent a lifetime hoping that my ASPS wouldn't metastasize, because every medical resource declared stage IV ASPS a death sentence. So when my oncologist said "There may be hope with this clinical trial, this one clinical trial," I jumped all over it.

It wasn't until later in my story that I was able to recognize the significance of the research element of my treatment. Everyone on my trial is monitored very closely for side effects and changes in disease. This data is collected and quantified, then sent to someone somewhere in the pharma industry who decides that because x number of patients on the trial have responded well (represented by the quantified data), they will be able to make the treatment available by prescription and covered by insurances. That means that my participation is allowing others to receive a treatment with a stage IV diagnosis, not a death sentence. As a cancer patient, this is among the most meaningful contributions to humanity I feel I could possibly make. There are unique risks with clinical trials, especially with new drugs or combinations since we often don't yet know the side effects. But that meaningful contribution to someone else's treatment is truly invaluable, especially when you consider the volume of patients that could benefit from your contribution for generations to come.

If ever you are given the option to participate in a clinical research trial, I hope you will consider doing so. A group of Renal Cell Carcinoma patients chose to participate in a Phase I clinical trial of axitinib/pembrolizumab to test its safety at varying doses. Because of their participation, that drug combination was allowed to move into Phase II studies, one of which is my axi/pembro trial. I am benefitting from their contribution and sacrifice, as I hope others will benefit from mine.

If you want to learn more about clinical trials, here are some resources:

• This article from my oncologist in Miami
• Q&A from clinical trials.gov
• Comprehensive info from American Cancer Society

We Live In An RV. And It's Awesome.

Well, at the end of May we sold our house and moved most of our belongings into our friend's basement for storage, taking only the necessities with us to our temporary residence. The RV.

As I've been telling friends where we planned to live, I've seen a mix of reactions from surprise to disgust to that-won't-last-long to envious to straight out laughing in my face. But for our family, this is a perfect fit.

I live with 2 of the most extroverted people I have ever encountered, meaning they never ever want to be alone. In our old house, whichever room I was in, they would join me there in about 5 minutes. We migrated around our 2,100 square foot home as a herd, rarely occupying more than one or two adjoining rooms at a time. And I've been enchanted by the idea of tiny houses for quite some time, so this season of life is fulfilling that (momentary) desire for me. (Side note: Where do the people who get those fancy tiny houses on HGTV store all their stuff?? There's no closet or pantry or secret storage, but they have a full-sized fridge and TV?! Yeah right. Not practical. Don't be fooled by the HGTV. You need a closet.) So RV life has suited our little herd just fine.

There have certainly been unique challenges, like the batteries on the fritz and having to start the whole thing to get adequate power. But now that's sorted out, there's only one lingering problem: the bathroom.

The shower is about the size of the shower we had in our house, and I have yet to experience the small hot water heater shortening a shower, so that's been much better than expected. There's plenty of storage, good counter space, a working sink. So the problem is- yep, you guessed it- the toilet. You see, the toilet is like an airplane toilet, dumping straight into the, um, collection center. So any time you flush, you open the gate to said collection center, and it smells like where death goes to die. It's so awful I could cry just thinking about it. We finally figured out a trick, which is a series of steps to take to avoid the deathness from taking over our entire residence, and it's much better now. But every now and then CJ forgets and flushes on her own without one of the grown-ups doing the trick. Those are easily the worst moments of RV living.  But the togetherness and novelty and simplicity far outweigh the stinky moments. And we genuinely enjoy it!!

It's a fun adventure, a challenge in simple living. The RV belongs to John's parents, and until we have water and electricity on our property, we are parked on the back of their land. That's meant family dinners and dips in the pool that we were longing for when we lived an hour away. Sweet confirmations that we made the right decision moving out into the country closer to family. I think our house will be done after the new year, so until then we will soak up these moments making sweet memories with our family.

Left to right: Dining, couch, dashboard and captains chairs, old school TV, new school TV, toy drawers, door, sink, oven and range, fridge.

Left to right: Fridge, pantry, closet, bedroom, bathroom

Queen size bed has our own mattress on it, bedroom has lots of storage and beautiful outdoor views.

Dining and couch. Couch folds out to almost full sized bed. Perfect for the 4 year old!

CJ's clothes/books/movies, shoe bin, door. 

All the clothes in our closet!! 

Pantry! It's super deep, tons of storage space!

I love this fridge, it's the perfect size! 

Sink has chopping boards that extend the counterspace. And hide the dirty dishes.

These patterns and textures make it feel like home for me.

Tons of bathroom storage!

I never want to forget these tiny feet always finding their way to me!

Life After Cancer

I see a counselor. It's amazing. I always leave feeling ten times better than when I walked in. There's just something about telling someone else about the crazy that's happening in my brain that is always so therapeutic. There were a couple sessions in a row when my counselor asked me this life-altering question:

What does life after cancer look like?

It stopped me in my tracks. I had never thought about it before, and had a hard time even wrapping my mind around the concept. My dumbfounded blurry-eyed gaze must have communicated my befuddlement, so he responded with a simple, powerful reply:

A study found that found that patients who believed that they would improve actually saw improvement at a higher rate than those with a neutral or negative outlook. I emphatically agreed silently thinking to myself "Uh, hello? Haven't you been paying attention?? That's like my THING." He looked at me and said "I need you to believe that you will have life after cancer, life without cancer." 

I was shocked. He was right. 

I believed that God would heal me. For sure. But I also believe that healing comes in many forms, including those we don't typically equate to "healing;" redemption has happened all along. I believed that my own healing was coming, but not enough to say that there would be life after cancer. It took a few weeks to really settle in and take root in my mind and heart, but one day I found myself ready to think about it: life after cancer.

I knew two things for sure: Life after cancer would need to look drastically different than life during cancer, and I need to live into the calling that God has given me to share the story he painted in my life. 

So we are moving!

We are moving out of the house where we did life with cancer. This is our way of saying that we believe that there will be life after cancer. The older I get, the more I realize how much I am affected by my environment. Breaking free from the walls that contained our sadness and turmoil will give us so much healing and freedom from the cancery season of life. We just bought 5.5 acres of wooded goodness in Fairview, west of Nashville near all John's family where we will build our house of healing. There is a creek and pond and trees and fresh air and land to be worked. We need that. We need a space for healing, and we found it.



There are three blessings that are making it possible for us to build right now: 1) The property became available at an amazing price; 2) Because of the crazy real estate market in Nashville and eerbody wanting to live here, our house appreciated a LOT in the three years we have lived here; 3) John's dad is a contractor in the county we will be living in, and will be building our house. I'm so thankful for these blessings. If any one of these 3 things hadn't happened, we wouldn't be able to take this next step of healing.

This move also means that I will not be teaching Anatomy and Physiology next year. I have LOVED teaching this class: it let me use my training as a PA even after I decided not to practice, it gave me something meaningful and productive to pour myself into, it gave me treasured relationships with students. After this year of treatment, I am keenly aware that I have only a certain amount of energy to use each day, and I am ready to allocate more of that energy to my sweet little girl and more joy-giving creative endeavors.

I will be spending more time writing (here!) and creating art that brings meaning and hope into the lives and homes of others. My experiences with scripture memorization have shaped my life and prepared me for the hard times, and I want to make it possible for people to surround themselves with words that will give them life and hope.

Life after cancer will be about spreading hope to others in every way I know how.

Thank you for joining our story and celebrating these milestones with us!!