Growth, New Treatment, and Miami Here We Come

I hate going to the doctor.

You would think I would be used to it by now, after a lifetime of cancer treatments and surgeries and checkups and finger sticks. But every time I go to the doctor, there is a distinct possibility that they are going to tell me that I have cancer. Again. And so when the time comes for me to sit in a doctor's office, I get super-big-fat-can't-do-anything-about-it grumpy.

So, grumpy is how I have been feeling for the last week and a half leading up to yesterday's appointment with scan results. Once a month I have been going to Vanderbilt to get lab work, and once every three months for scans to monitor the tumor we found in my heart during my pregnancy over 3 years ago. It remained stable after delivering in March 2014 until April 2015 when we detected a small amount of growth, prompting me to start targeted therapy cancer treatment in May. 

Yesterday we heard that the tumor in my heart has grown again.

Until now we have not seen any measurable growth in the tumor size while on the treatment. There was also growth in some nodules that had been previously documented, but we did not know they were cancerous until they grew (cancers grow, normal nodules don't). At this point they are seeing cancerous masses in my liver, spleen, infraspinatous (shoulder) muscle, and muscles of the anterior chest wall (right under my arm). This is not at all the outcome we hoped to have on this treatment.

There are some important things to note here- my cancer has not rapidly spread to several other places. It was already in those places. Looking at the scans I had 3 months ago and 6 months ago, they can see the nodules that appeared normal at the time that were actually cancer just wearing a normal looking mask. So this is not new SPREAD, it is just new GROWTH. We believe that my cancer spreads through a mechanism called "Seed and Soil" meaning that the cancerous cells (seeds) could have taken root in several different tissues, but didn't have the right conditions (soil) to start growing. Now, for whatever reason, they seem to have the soil they needed to start growing, and that is what we are seeing now. 

Thinking back on those moments when we were hearing this news makes me think that maybe we are all secretly a little petrified to sit in the room where a doctor tells you that you have cancer lots of places in your body. Maybe even more than petrified. I know I was. There's so much fear around those big unknown moments in our lives, and we can scare ourselves silly thinking up scenarios to prepare/scare ourselves for those moments. And you know what? My moment came. And I SURVIVED THAT MOMENT. I was surprised while I was sitting in the room listening to the doctor make that Charlie Brown's teacher noise that I hadn't thrown up or fallen over or just punched her right in the face. Because when your moment comes, it's not that scary hypothetical anymore. It's your reality. It's what is right in front of you in your PRESENT moment. 

And you deal with it. Because you have to.

And then you have to ask the doctor to repeat everything she said because turns out she wasn't just making the Charlie Brown's teacher noise, she was actually talking real words at you that are super important.

So my wonderful oncologist is sending us to Miami, FL to enroll in a clinical trial that is about to start for a new drug combo to treat my specific kind of cancer (alveolar soft part sarcoma). Both of these drugs are newer cancer treatments, and neither one is chemotherapy. Cytotoxic chemotherapy attacks all rapidly dividing cells in the body to kill the rapidly dividing cancer cells, but it also kills the rapidly dividing healthy cells as well, accounting for some of the more notable and horrific side effects of chemo- hair loss, nausea and vomitting, etc. One of the drugs is a pill that is like a cousin to what I am currently taking. The other is a new form of immunotherapy and is administered as an IV infusion once every 3 weeks.

The educator and clinician in me can't pass up this opportunity to tell you more about some of these things. So here's your science lesson for the day.

Immunotherapy is a newer science in the cancer field that essentially causes the immune system to rev up its response to cancer invaders. It's a drug that causes your own immune system to do its job with greater force and tenacity that it was doing before. It turns immune cells that play ball like your little brother into cells that play like LeBron. It does this through the use of antibodies, in this case to bind to a specific site on the cancer cell and activate the fighter T cells to up their anti-cancer game. The pill will work by blocking important signals that tell the cancer to grow and helps get them food. 

The immunotherapy has had promising results in patients with melanoma, a cancer that was previously very difficult to treat in its late stages before about 4 years ago when we started using immunotherapy to treat it. This is the first trial for my cancer with immunotherapy.

Education time over.

So on Monday and Tuesday (yes, THIS Monday and Tuesday!) we will be taking a trip to Miami to visit with the doctor who is running the trial to make sure I can qualify and get a preliminary consult. Once the trial starts in the first week in March, I will need to get a biopsy of one of the easy to access spots (side muscles or shoulder muscle), and have more scans and blood work done. If I qualify for the trial, we will be going to Miami once every 3 weeks for the IV infusion. Clinical trials require that all medical care related to the trial be done at the site of the trial, so to receive the infusion, we will have to make a trip from Nashville to Miami once every 3 weeks. Our trip to Miami is nearly booked thanks to the loving generosity of our friends. HUGE thanks to those of you who have made this happen for us.

This is sad and disappointing, but not mortifying.

Since cancer is kind of part of my normal, this is something that was not unanticipated. Feared? Certainly. Unwanted? Absolutely. Unanticipated? No. This is the reality that we have before us, and it is the reality that we will walk through with faith and love and boldness.

John and I have come to see that our lives kind of uproot and take a completely new shape about every 3 months. So every 3 months there is some big aspect of our lives that we have to assimilate into our new normal. This is our 3 month mark, so we are going to uproot part of ourselves to Miami every now and then (Uh, did you realize that I get to go to the BEACH once every 3 WEEKS?!? Because I did. Thank God this trial isn't in New York or DC or anywhere snowy. I would have certainly started punching people in the face if that was the case.).

So how are we doing? Great question, that's so nice of you to ask! John and I process news like this very differently:

I usually sit in denial for about 3 days, and then have my emotional meltdowns. That gives me time to do things like explain to people what we've heard and what will happen. So I'm still in denial right now, but when more than just a handful of people know, I am going to start feeling all of my feels. I have been significantly more tired in the last few weeks because of the tumor growth we now know about, and that fatigue continues. I am not in any pain.

John feels all his feels on the front end and then switches into GO mode to start getting things together. He is an awesome husband you guys. No one wishes for a life of treatments and appointments and waiting like this, but he has risen to beautifully to his role of caretaker. He's amazing.

I feel a tremendous amount of strength right now. But let me be clear: I attribute 100% of that strength to the Holy Spirit and God's great provision. I am not strong. God is strong. I am weak and frail and tired and frazzled. GOD IS STRONG and his strength in me makes ME strong. And makes you strong too! What a beautiful gift.

We are both proceeding from this moment with a tremendous amount of faith in God, who is the author and perfecter of our faith, and uses moments like these to do that perfecting. I believe so strongly that God redeems broken and messy things and makes them beautiful, meaningful, and life changing. This moment is super messy, there's no denying it- and making messy things MATTER is God's thing. 

There's not a whole lot to be done at this moment. I am so thankful for a community of people who want to help when we are hurting, and I certainly will let you know when that time comes. We plan to keep this blog updated as we have new information. Hopefully those posts won't be as long as this one, amiright?!

For now, please pray that my heart function will be strong enough for me to get on the trial and for an easy and readable biopsy. Pray for strength and peace and joy. Pray for healing.

We welcome your texts and Facebook messages and emails. We love hearing from you and the bits of encouragement you are able to offer us. If you want to call, please text first and we will call you when we are ready. Thank you for your patience and support up to this point and going forward. Thank you for walking this messy road with us.

Now to Him who is able to do immeasurably more than all we ask or imagine according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, both now and forever!