Saturday, September 9, 2017

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

Saturday, August 12, 2017

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!






Wednesday, June 14, 2017

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!!

Wednesday, June 7, 2017

Conquering Cancer




If you’re lucky, every once in a while there comes an unexpected moment that profoundly changes you. It breathes fresh air and life into you, reminding you of a simple forgotten truth: You are a part of something much bigger than yourself. This was one of those moments.


My oncologist and I were asked together to share how cancer research has been a part of our lives. We stood in a room of donors, oncologists, researchers, board members and benefactors to share the difference they have made for us, not to the field of oncology or scientific research, but to OUR stories. And it was life-changing. 

Dr. Wilky shared about Pamela, the patient that led her to become a sarcoma specialist; and Manny, the patient that ignited her fiery aggression toward ASPS that led to the start of the axi/pembro clinical trial that I’m on. I was able to share about my young family’s long hard journey with cancer, and the miraculous response I am experiencing on this clinical trial, the new life it has brought me. 

Before I left for the ASCO conference in Chicago this past weekend, my dad told me to take an intentional moment to take it all in just for memory’s sake (wise counsel from someone who knows my tendency to repress and forget). As I stood on the stage looking at the crowd that was gathered before me, I took time to dwell in the moment. I soaked in the lights and sounds and ambiance. I looked at the faces that were listening to me. And do you know what I saw on the faces of cancer’s big donors as I told them my story? Compassion, pride, joy, excitement. Compassion for me, pride in their work, joy that their donations were meaningful, excitement for a future of more successes.

I was profoundly struck in that moment by the realization that I am a part of something much bigger than myself. I was struck that my story would have had a much different ending if Dr. Wilky had not been funded as a young researcher; if someone in a lab had not spent many late night hours developing axitinib; if someone at a drug company had not championed the approval of pembro; if Pamela or Manny had not crossed Dr. Wilky’s path; if Dr. Keedy had never heard of the axi/pembro trial; if there had not been a foundation to raise money specifically for ASPS research; if a donor had kept their wallet closed instead of giving to my travel fund; if just one of these people had forged a different path… I may not be here. 

This story is not just mine, it's theirs. It's Manny's story and Pamela's story and Dr. Wilky's story. It belongs to her mentors, to the research donors, to the axi/pembro phase I trial patients, to Pfizer and Merk, to nurses and pathologists, phlebotomists and techs. It belongs to you for reading this blog.

I am a part of something much bigger than myself. I’ve said many times that my journey is really God’s story that he is writing with life. And I have failed to widen my gaze enough to see that God is not bent over his desk with a pen in hand scribbling out his story for me, but he is orchestrating us all together (not orchestrating our every move, of course, but harmonizing our different gifts and purposes). We belong to the same symphony, our stories resounding together. 

I carry with me the sacrifice, generosity, and love of the many many many people who have come before me and along side of me to bring me healing. It's not just my story, it belongs to all of us. 

And guess what? Your story does too. Whatever your story, it also carries with it the sacrifice, generosity, and love from the many before you. You are a part of something bigger than yourself. Take time to dwell in this moment and let it sink in that there are many many many people who have come before you and along side of you to bring you to where you are now, your spot in the symphony. It’s inspiring and humbling and compelling.

Over the last three years, the Conquer Cancer Foundation was able to raise over $152 million dollars for cancer research, exceeding their goal by over $2 million. On the night Dr. Wilky and I spoke at the CCF Evening to Conquer Cancer, 6 Young Investigator Awards were funded for young oncologists to begin their research careers. They were hoping for 4. 

Our stories are compelling. God's hand in our lives is evident and compelling. And I'm talking about your life too. Let's share those stories. Let's compel each other toward good, toward conquering. 


Watch the speech here:











Sunday, May 21, 2017

One Year Later



Today marks one year since I started on the axi/pembro clinical trial for sarcomas! This has been such a hard year, but it has been so rewarding. It all gets jumbled in my mind so easily, so I'm going to bullet-point it:


  • My cancer was metastatic (stage IV) a year ago with tumors in my heart, liver, spleen, spinal canal, right breast, right lateral chest wall, right deltoid muscle, left infraspinatus muscle, scalene muscle, subscapularis muscle, scalp, 2 vertebrae, right humerus, left hip, and brain. Now there is only 5mm of cancer left in all of my chest/abdomen/pelvis!! (don't know about the brain, haven't had that scan yet)
  • My thyroid bottomed out a few months into the trial because of one of the treatment medications, causing lots more fatigue and depression. After several months of medication adjustments, my thyroid is back in normal range! Right now I feel the best that I have felt in the last year of treatment! Praise!
  • My heart function was starting to wain, but after the 5cm tumor in the left ventricle disappeared, those muscle cells are starting to regain some of their function. It's looking like my heart function could be low-normal at this point! That's a HUGE deal for me moving forward.
  • I taught A&P as an adjunct at Ezell-Harding, John helped bring us through a hard year at church, and CJ managed to put the terrible threes behind and has turned into a (mostly) lovely, bouncy 4-year-old. 
  • It was also one year ago that I lost my hair. Before I started the clinical trial, I had to have brain radiation for the 23 tumors they found there, causing me to lose my hair. Thankfully, neither of the treatments that I am currently taking affect hair growth at all, so it has been able to grow back! It was long and wavy before, a lot like CJ's is now, with the front really curly and the back much straighter. Now it's all really curly!
  • One year ago the clinical trial protocol required that we travel every Friday for lab checks, seeing the doctor once every 3 weeks and having scans once every 9 weeks. Thankfully, we only had to maintain that schedule for the first 13 weeks. Now we fly every 3 weeks to Ft. Lauderdale on Thursday night after a half day of work, have clinic appointments in the morning, and fly back to Nashville in the evening. Every third visit (9 weeks) we fly down one day earlier for a day of scans.

One year ago we realized there was no way we were going to be able to pay for the 42 flights it would take for participation in this clinical trial. We opened up a fund for travel support and you guys blew us away with your generosity, donating over $16,000 in less than a week! That was so humbling and inspiring to us- we saw the hands and feet of Jesus carrying us along in that dark time. You gave us hope and a future. YOU did that. And I cannot say thank you enough for your kindness and generosity.

We put those funds into a separate checking account to pay for our flights. We used American Airlines to fly directly to Miami during weekly travel and while I was exhausted after treatments. We now fly Southwest to Ft. Lauderdale, which is considerably cheaper. We are racking up points for ticket purchases, and are well on our way to a buddy pass!!

The funds that you gave have paid for all of our airfare in the last year. We use those funds only for airfare, as we want to be good stewards of your money. John and I are happy to pay for all other medical expenses and travel incidentals as we always have. Carley Jean comes along with us when we are gone for a few days in a row and has made besties with everyone in the clinic. She has made us very popular for the times she is with us, and very regular for the times she stays with her Bobbie!

One year later the sentiment that resounds in my mind and heart is a simple, yet overwhelming: Thank you. I say it to God as often as I can, usually just as a "thank you, thank you, thank you God," because the entirety of the thing is too overwhelming to think through every time I pray. Thank you to the family and community that have surrounded us and made this all possible. Thank you to the friends who come watch CJ every Monday while I work. Thank you to the teachers who pour love and affection and truth into my little girl even when I can't. Thank you to the friends who put up with our changing lives and schedules, who stuck around even when it got really hard.

Thank you to YOU for sharing this amazing story of redemption with me. Isn't it amazing to see what God is doing?! He is healing bodies and hearts and souls with this version of the same story he has been telling for ages: I made you, I love you, I redeem your messes, I want you living in me. It's so powerful. And it's so humbling to see that story in my life. I hope you can see it in yours.







Sunday, May 7, 2017

The Happy Dance! Just One Left!!






















Let's just get straight to the point: on last Friday's CT, there was only ONE SMALL concerning mass in my spleen. Almost 1 year ago I started a clinical trial for metastatic ASPS that had spread to my brain, liver, spleen, heart, neck, chest wall muscles, scapula, breast, scalp, spinal column, and right atrium. The brain we scan separately, so I am only speaking for the neck down when I say...


THERE IS ONLY 5mm OF CANCER LEFT!!


I can't believe it. I'm doing the biggest happy dance of all time!! PRAISE GOD!! 11 months of treatment and wowzers. Totally worth every one of the 27 round-trip flights from Nashville to Miami (made possible by YOU generous people!). Here is a word salad of how I'm feeling: humbled, grateful, ecstatic, dumbfounded, overjoyed, praisey, exhausted, adrenaline, karate kick, breakdance, breathless, humbled. Mostly I feel humbled to be one of the ones who makes it. I feel humbled to be a part of developing such an astounding treatment option for others who fall victim to such a rare disease. I feel humbled by the rich overflow of God's blessings on my life.

I have some things that I want to share with you. Things from my heart about the hard times and how they are becoming healing times. But that's for another day- today is the happy dance!!





Thursday, February 9, 2017

We're Running Out of Things to Measure: 8 Months of Treatment



Yes, it's true! My last scans were just as amazing as I had hoped and prayed they would be. In the words of Dr. Wilky, "We are running out of things to measure!" She said that and a hundred flash mobs started dancing in my brain in celebration! But brain flash mobs don't translate well into words, so I just stared at her for a few seconds hoping that the dance mobbing would translate itself into words. I think I finally teared up and said "Uh, wow, okay, I don't even know what to say (insert dumb looking face with my mouth wide open and more seconds of waiting) Thank you, God!," which I felt was pretty good translation.

In May of 2016 I started the Axi Pembro Clinical Trial at the University of Miami for metastatic (stage 4) Alveolar Soft Part Sarcoma. On my pre-trial scans, they identified tumors in my heart, liver, spleen, spinal canal, right breast, right lateral chest wall, right deltoid muscle, left infraspinatus muscle, scalene muscle, subscapularis muscle, scalp, 2 vertebrae, right humerus, left hip, and brain. Widely metastatic and super scary. 

Now 8 months into immunotherapy treatment, tumors only remain in my brain, heart, liver, and spleen. All evidence of disease is shrinking, with total tumor burden decrease of about 90-95%. The heart tumor (which is kind of the primary tumor) has reduced by 90%. All this for a type of cancer that had virtually no known systemic treatments!!

I plan to stay on the trial until it is completed in about a year and a half. I can't begin to express how thankful I am. The "primary" heart tumor found during my pregnancy was my 5th recurrence of ASPS, with my initial diagnosis at age 3. This is the answer to a lifetime of prayers from friends and family all over the world. God's provision and plan is woven into every detail of our journey, and all glory belongs to him for this marvelous rescue.

If you want to learn more about 

Thank you for your love, interest, and prayers. We could not have made it one step without our people (you!) supporting us. Thank you, thank you, thank you!



video

Friday, December 30, 2016

Miraculous: 6 Months of Treatment

For the last 6 weeks or so we have been celebrating HARD! I’ve unintentionally / on purpose postponed writing about my scan results because I just haven’t been able to wrap my mind around it. I told you, I take a LONG time to process things!


November 11 (my husband’s birthday!) my scans revealed that my cancer is MASSIVELY SHRINKING! 6 months after starting the Pembrolizumab + Axitinib Clinical Trial for ASPS and other sarcomas at the University of Miami, we are seeing MIRACULOUS results. <<Let me remind you before I go any further that Alveolar Soft Part Sarcoma (ASPS) is a very rare cancer, this is my SIXTH bout with it, there are no other treatments, my cancer is inoperable, and in February we found out it had spread almost everywhere. Those are important facts to keep in mind as we proceed.>>


CT scans revealed that the tumors previously found in my chest wall muscles, scapula, breast, neck, scalp, spinal column, and right atrium were completely gone. Tumors in the liver, spleen, heart, and neck had an overall reduction in size of 60%.


But the most impressive BY FAR were the results from the echocardiogram.


On the left side of this image is a picture of the tumor before pembro/axi treatment from when I started the trial in May.




The mass inside the dotted line is the tumor that has been in the left ventricle of my heart for 4 years (white represents normal tissue and tumor, black is heart chamber where the blood is). On the right is a picture from my November 11 scans. It’s about 75% smaller! After only 6 months! This is easily the most dangerous and life-threatening tumor I have, and to see it shrinking away, melting away, is simply miraculous (as said by the echo technician, the radiologist AND my oncologist, all separately). John and I ran our own numbers, and we estimate that the overall tumor burden has been conservatively reduced by about 80%!


Miraculous. Praise God.


Miraculous. I totally agree. I am simultaneously stunned and not surprised. We prayed with confidence and faith that God would take care of us, and he did. Even if the tumors had been larger or more widespread, God would still have been taking care of us all along the way. It’s what he does, it’s who he is; he cannot help but mercifully and graciously love us, as sick and messed up as we are. That is tremendously humbling to me.


I haven’t been able to post about this before now because I’ve been wrestling in my heart with two words that have never entered my mind before those moments with the scans- why me?


When I was diagnosed (several times), I knew why me- for the same reason why it could be any of us! We’re human and broken and in need of saving, set with an expiration date to go home (you know, HOME home- the up there in the clouds home). Now I sit with these remarkable miracle scans in front of me and humbly and tearfully ask The Lord, “Why me? Of all the mothers and brothers and grandchildren and poor and hurting people who receive prayers for healing in your name- why was I spared when others weren't?” After weeks of hiding this little question in my heart,, I found that I already knew why I was spared- for the same reason why it could be any of us that are spared! Because he’s got more for me to do here. With you. Bringing glory to his name.


This is tremendously humbling to me. If you know me well, you know that I am not a humble person. At all. It’s not my gift. And yet looking at these scans, seeing the fingerprints of God left behind in this masterpiece miracle, I find my self-righteous and arrogant persona quickly melting to the floor. How can I look at this and think anything except “God, you are amazing.” How can I ever again think that my place in life is because of my smarts or abilities or charm? No, I am living and breathing right now because of the mercy and graciousness of Jesus Christ. And you know what?! I was only living and breathing BEFORE the cancer because of the mercy and graciousness of Jesus Christ, but was blind to see that truth through my veil of arrogance.


It’s the same for you. Whatever your redemption story- TELL IT. Don’t have one? Use mine. Mom-of-toddler being successfully treated for metastatic (stage IV) cancer she’s had intermittently since she was 2; she lived long enough to finally receive the treatment she’s needed for 25 years. Wife of minister finding humility after a lifetime of arrogance and perfectionism. Young family finding life in Christ more than life in healing. Use mine.

But God is so rich in mercy, and he loved us so much, that even though we were dead because of our sins, he gave us life when he raised Christ from the dead. (It is only by God’s grace that you have been saved!) ... God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. Salvation is not a reward for the good things we have done, so none of us can boast about it. 10 For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago. -Ephesians 2:4-5, 8-10


Before I sign off, I want to implore you: If you know anyone who has late stage sarcoma, especially ASPS, please tell them about these findings and this trial. It’s a rare disease with very few research opportunities, so please help me spread that word! Follow this link to the trial via clinicaltrials.gov (a great site for ANYONE who is looking for a clinical trial of any kind!).



We shared this information with our church one Sunday. If you want to see it, you can follow this link and click on "God So Loved The World," we start at 5:30.

Thursday, October 13, 2016

October Update

I'm long overdue for an update. And I suspect you're tired of reading everyone's thoughts on the presidential debate, so here's something less dramatic for you to read :)



I've been on my clinical trial treatment for Alveolar Soft Part Sarcoma for 22 weeks now (about 5 months). I have an appointment in Miami every third Friday to receive my immunotherapy drug (pembrolizumab), and then everyday at home I take a targeted cancer treatment pill (axitinib). John (husband/babe) and I typically fly out of Nashville on Thursday afternoon and back on Friday night, sometimes leaving our spunky 3 year old with grandparents in Tennessee, sometimes taking her along for the ride (she's a big hit in the cancer clinic and sometimes in airplanes).

We extended our last visit to the clinic into the week for a much needed fall break vacation. We flew out the day before Hurricane Matthew hit the east coast of Florida. That's fortunate planning!



At my last scans in August we saw empirical evidence that my tumors are shrinking (slightly, but we thought they would grow in the first 6 months, so any regression at all is significant!), and now we have more evidence from the biopsy to confirm that the drugs are working on a cellular level! There are 5 tumors that I have been able to feel. At this point the one on my scalp is completely gone, I can't feel the one in my neck at all, and the other three are significantly smaller than they were before, even in August! HUGE blessings!!!!

I had to have one spot biopsied because the August scans actually showed that it got bigger while all the other masses were getting smaller. It came back as ASPS, the cancer that I'm already being treated for. When we biopsied it, we thought that I was going to need to have it removed because it was growing and hurting. But since the biopsy it has stopped hurting and doesn't seem to be growing anymore! So to those of you who pray so faithfully for my body and my healing, I want to say THANK YOU for praying even without updates-- you carried me through a season when I thought I would have to have another surgery, praying for strength when I very much needed it.

Side effects have been mostly bearable on this treatment- by that I mean that I'm not regularly sick or nauseous, and I still have energy to go to church and teach my one high school anatomy class. I have had the most trouble by far with fatigue. For me that looks like a decreased energy capacity, brain fog (some from this treatment, some from radiation), and overall blahness. New to the side effect list is  low thyroid function from the mean ol axitinib. Apparently it's just tearing up everyone's thyroids. How rude. AND guess what thyroid disruption causes? Yep, fatigue. So in the last 2 months my fatigue has changed from can't-go-to-the-store tired to brain-foggy-and-emotionally-exhausted tired. So the fatigue actually has improved, it just happened to improve at the time when something else came along with its own variety of fatigue.  It's still limiting, but I am now able to be more active than I was a couple months ago, which I am incredibly thankful for.

In August we stopped traveling to Miami every week and started traveling once every three weeks, making the clinical trial much more manageable. Yet at the same time, changing our schedule so drastically and then recovering from the exhaustion of weekly travel has been hard. HARD. It's been a different kind of hard for all three of us, and we have each had to learn to cope with each other's coping while also coping with our own coping. You know the drill. That's just how being a family works.

This is one reason that the updates have been infrequent-- because it has been hard. And I feel like any smiling picture makes it look like we're breezing through without any troubles, just happy go lucky. It's so important to have a positive attitude when you are working through hard things, and yet that same positive attitude and gratitude can make it seem like you're happier than you actually are, or like it's easier than it actually is. And sometimes (lots of sometimes) I'm not happy and it's not easy. I'm still thankful to be where I am, and I still have hope and faith in God's redemption work, but I'm not always happy and it's not always easy. And that's true for all of us.

Now the hardness is getting easier. We've spent lots of time adapting to our new pattern of living, and we all seem to be finding a good pace at which our lives can run. It includes lots of breaks and rests, and we've largely learned to make that work for us. When your cancer is shrinking, almost any pace that life will allow is a pace that you accept with open arms, not always happy about it, but always accepting.

And my hair is growing back!



In May it fell out after brain radiation (what?!? I can hardly believe I had brain radiation!), and it's finally starting to cover my head again. The back wasn't affected by the radiation, and the front was the most affected by the radiation, so I am currently rocking a very classy mullet. I've become quite fond of my head scarves, so I plan to keep wearing them through the fall and winter. Maybe intersperse some headbands in there if I'm feeling wild. Who knows!

I really love writing in this blog, so I am going to make an effort to keep the updates more regular. But don't hold me to that if it doesn't pan out!

If you want specifics to pray for- my thyroid, fatigue, and fogginess could use some real work. And I'm praying that even when it is hard I can have ears to hear where God is calling me, because I know he still uses us when we're exhausted and tired, but it's easy to forget that when you're exhausted and tired.

Thank you for joining our journey!









Friday, August 19, 2016

You'll Want to Read About My Cancer Scans...!!


After 2 cycles of treatment on a clinical trial for axitinib+pembrolizumab, I had my first scans and results since starting treatment 14 weeks ago for metastatic Alveolar Soft Part Sarcoma. I'll get right to the good stuff:

There were NO NEW tumors present!
The small lung tumors were STABLE!
And the tumors in the liver, spleen, and heart (!) were SMALLER!!

Smaller by a small degree, but any shrinkage is a big deal for this sarcoma. We initially thought the tumors would swell with immune cells and enlarge in the first 6 months, so shrinkage in the first 3 months is remarkable! Still waiting to hear about the degree of shrinkage (that's a weird word) and results from a couple tests, but what we've seen so far is VERY encouraging! Worth all 17 trips we've made here so far.

I'm thankful that there's now empirical evidence for what we already knew was happening. I'm thankful for these small bits of healing and won't take a moment of them for granted. I'm thankful for a supportive team and community of people who stand by us and believe with us that God can heal. I'm thankful for this opportunity to tell you that God is so faithful and has brought me this small bit of healing after almost 4 years of waiting with cancer in my heart and after a treatment failure and metastasis.

This small bit of healing is a very big deal. It's giving us hope, and dare I say expectation, for more. That's what it means to say that faith is being SURE of what we hope for and CERTAIN of what we do not see. That's what it means to have faith in God- to believe that he will do it what he has promised to do. Has he promised to heal me? No, certainly not- none of us have that guarantee. But he HAS promised to bring glory to his name, and that's what he's doing here in the Sullivan story- God is showing his power here in his planning and his care, do you see it? Do you see it happening? I hope you do.

He gave us a pregnancy
that showed us a heart tumor
that I wouldn't have known about otherwise.
He stabilized the cancer
he brought her to term
the tumor grew and spread.
We delivered a healthy 34 week baby
a week later the cancer shrunk back
and the new masses were gone.
3 years of treatment-free watchful waiting
until it slightly grows.
9 months of targeted treatment
then massive metastasis.
Brand new clinical trial opening
set to be the first patient to enroll.
Find brain mets
have brain radiation
get to finish teaching my school year.
Enroll in clinical trial
start traveling on summer break
missing very little work.
3 months of treatment
and we have evidence that it's effective.

I wouldn't have known about the cancer if not for the pregnancy. I wouldn't have a healthy baby if we didn't know about the cancer. I wouldn't have made it on the wait-listed trial if it had spread later. I would have missed teaching the last month of class if not for brain radiation (not a great reason to get brain radiation- but if it has to be done, let's look for the redemption in it, amiright?!) If not for the mets, I'd still be watchfully waiting when it could have been shrinking.

GOD IS ALIVE AND IS WORKING IN OUR LIVES.
He is almighty and faithful when we are weak and wandering. He gives us confident hope to believe that he is good and mighty and worth following. He redeems the broken and binds up the wounded. God cares about me. And if he cares about lil ol me, he cares about lil ol you. And will redeem your broken so that you, too, may say how great and mighty he is to save.

Let me proclaim your power to this new generation,
    your mighty miracles to all who come after me.
19 Your righteousness, O God, reaches to the highest heavens.
    You have done such wonderful things.
    Who can compare with you, O God?
20 You have allowed me to suffer much hardship,
    but you will restore me to life again
    and lift me up from the depths of the earth.
21 You will restore me to even greater honor
    and comfort me once again.
22 Then I will praise you with music on the harp,
    because you are faithful to your promises, O my God.
I will sing praises to you with a lyre,
    O Holy One of Israel.
23 I will shout for joy and sing your praises,
    for you have ransomed me.
24 I will tell about your righteous deeds
    all day long,

Psalm 71