Scan News

Hi, guys. So we have an update on my scans from last week. The news isn't perfect, but it's not worse case scenario either. The radiologist who read the scans reported 3 new nodules on each lung. The nodules are so small that Boston is calling the scans inconclusive. It's possible the nodules are inflammation, but at this point they are too small to biopsy so we can't yet know for sure. 

They want us to wait 3 months to rescan unless I start having symptoms (persistent cough, nausea, pain, etc..) which would mean we would get rescanned immediately. When we talked to Dr. Sullivan yesterday morning, he was very optimistic. My blood work looks great, the nodules are tiny, and I feel well! He couldn't promise it wasn't cancer, but he did say that most of the nodules were not classically formed, meaning they weren't all solid/tumor like. He said things look good, and unless I start having symptoms, we should assume the best. 

Of course, we wish the scans were completely clear, and we didn't have to wait three months to know more. But. We have played this waiting game before, and we have the benefit of experience. It is just another opportunity to trust God, to remember His faithfulness towards us, and to keep living life knowing that there is not a person, circumstance or disease that can thwart God's will for my life. 

We have been thinking about and praying about this news and what it could mean since we heard the preliminary report last Friday. And though it was hard, hard news to process, we were reminded of all God has done for us since I was first diagnosed. So many answered prayers, so much grace for the journey. He has sustained us all through this journey. 

There will be some hard days ahead, no doubt. Waiting on news like this is not easy, but I have a track record of the goodness and faithfulness of God to fall back on in the moments of fear and uncertainty. Our God is trustworthy, and he is faithful, and above all, He is good. 

So that's where I am standing. By His grace I can rely on Him for the strength to live without fear of the unknown. I will rely on Him to give me everything I need in this waiting period. 

Please keep us in your prayers - that at the next rescan, my lungs would be all clear, and that I would remain healthy and symptom free in the meantime. Thank you so much for your love and support. I am so grateful for all you have done to love and support us!

Psalm 27:

13 

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.

14 

Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

Updates - Still Clear!

Hi friends!

I have a few fun updates for you. First things first- I just had another round of clear scans and a great check up in Boston. My levels are perfect, and by all accounts I am healthy and feeling extremely well. Praise the Lord! I am so thankful for each good report.

So this is a pretty special week for me...This week I am celebrating 6 months out of treatment and one year cancer free. Tomorrow I will celebrate my No Evidence of Disease anniversary by running in the #MIMGARR (Great American River Run) half marathon in Memphis, TN. 13.1 miles- one mile for each month I was in treatment, and one mile less than months I was given to live in August of 2014.

I think back to that day not so long ago in August 2014 when we got the phone call that turned our world upside down. I remember feeling crushed under the weight of the news - like someone suddenly sucked all the energy out of my body. The angst of dealing with a poor prognosis and fighting to get into a clinical trial. The 2, sometimes 3 trips a month to Boston for cancer treatment for 13 months. Battling for a sense of normalcy in a time of chaos. One exhausted foot in front of the other.

And although it was certainly a challenging time, it was also a time cloaked in the grace of God. When all the hospitals told us the clinical trials we needed were full, even in Boston, a "hidden" spot that no one seemed to know about miraculously opened over the weekend after my Friday consultation. He cared for and protected my baby girls by way of grandparents, other family members, and friends. He gave us unbelievable friends and strangers that selflessly gave of their time, energy and finances to shore us up and encourage us. I'm beyond grateful. Y'all- I just don't believe I would be here today without your prayers and support. I'm so thankful for you all.

I can't wait to cross the finish line tomorrow and celebrate all that God has done to bring me to this point. Until then, I'm off to catch a plane and carb load. Have an amazing Friday!!!

 Do you see what this means—all these pioneers who blazed the way, all these veterans cheering us on? It means we’d better get on with it. Strip down, start running—and never quit! No extra spiritual fat, no parasitic sins. Keep your eyes on Jesus, who both began and finished this race we’re in.

-Hebrews 12:1 from the Message

Taking a Break from Treatment

Dear friends,

I want to start by thanking you one million times over for your prayers for my friend Molly, whom I wrote about on the last blog post. Molly is now in heaven, free from pain and suffering, her beautiful life still inspiring me and countless others. I also want to thank you for your prayers for us as we had to decide next steps for treatment. I know the unwavering peace I've had since we met with my medical team is due to your faithful prayers on our behalf.

We met with Dr. Sullivan in late December to determine our course of action following my unexpected exit of the clinical trial in mid-November. As it turns out, between my November and December visits, Bristol Meyers decided to reopen the trial to complete responders (there are only two Complete Trial Responders in the U.S. that I am aware of, and both of us are patients at Mass Gen). So, we were given 3 options moving forward: continue treatment on the trial, take just the Opdivo infusions (one of the drugs I've been taking in the trial and now FDA approved) somewhere closer to home, or take a break and continue to be monitored closely.

We went into our meeting and discussed all options at length. Knowing the ferocity of the disease and its statical likelihood of recurrence, we have always wanted to take the most aggressive treatment approach available. That has always been the game plan, and I was certain we would continue treatment in some form after leaving the trial in November. However, there is no scientific evidence to support that continuing treatment after an all clear/NED report will prolong remission. So, after lengthy discussions and advice from my medical team and a lot of prayer, we have decided to take a break from treatment and just be monitored very closely at Mass General moving forward. This is not the decision I was anticipating we would reach, and we didn’t decide the day we met with our team to discuss my options. But Vic and I both left that meeting feeling like it absolutely made the most sense to take a break, and after praying about it for a few more days we made the decision final. I felt complete peace with the decision and have not looked back.

Being off of treatment has been a gift. I cannot explain how freeing it has been to not make the trek from Mississippi to Boston (a minimum of) every 14 days. From October 2014-December 2015, I went to Boston 35 times. (WHAT? I know. I can’t even.) My body is just now realizing how taxing treatment + travel has been. I continue to feel better each day, and it is thrilling. I had completely forgotten what it felt like to feel good! I even started running (read: jogging) again. Of course, being off of treatment is a little like taking the training wheels off of your bike. It’s nerve-wracking at first and you feel a little wobbly your first few rides. I’m doing my best to not let every little fever or ache freak me out, and luckily I have sisters to help with that. A few weeks ago I was experiencing a pretty intense pain just under my right lung when I was running (jogging) on the treadmill. I convinced myself the cancer had returned and called my sister, a nurse, in a panic. She calmly reminded me, “Meredith that’s not cancer. That’s called being out of shape.”  #SoThere'sThat

......

Lately I’ve been reflecting on the past year, and the bleakness of my diagnosis, and I am again overwhelmed at the goodness of God and how He has orchestrated my healing. I’m amazed at how the Creator of the universe comes down in such a personal way to each of us. How He meets us in our pain, bears our burden, and gives the grace we need to walk through the most difficult of circumstances. I think about how so many of you, known and unknown, have helped carry us through this season of hard. The way you have cared for us is miraculous and humbling beyond belief. You make me want to do better, love bigger and give more.

So now that I’m officially off of treatment and enjoying NO EVIDENCE OF DISEASE (#jazzhands), I have the opportunity to choose to trust God’s plan for my life and mentally live in the right-now instead of the what-ifs. Easier said than done, for sure. We are aware that the odds of remaining NED are statistically not in our favor, but I know that God’s plan trumps any statistic. I am resting in the fact that when I submit to His purpose for me, I am safe. Whatever “safe” looks like, I know that if it’s in Him, then it’s good. (I just need lots of help fulfilling my end of the bargain - submitting.)

So here’s our plan moving forward. We are actually staying in the trial for monitoring purposes, just stopping treatment. This way, they can continue to use my labs to help researchers learn more about the disease, drugs, and hopefully a cure. After my next round of scans on Feb 16 and Boston appointment on Feb 24, I will only have to travel to Boston every 3 months for scan reviews, labs, checkups, etc. Should there ever be a recurrence of the disease, all treatment options are open to me. I can jump right back onto the trial drugs, or pursue any other treatment option. Emily or I will post scan results here on the blog after the 16th, and my precious friend Caneel will post to the Facebook page (www.facebook.com/teammere/) for those of you who prefer to follow our updates there.

Thank you, thank you, thank you for your love and prayers. I am overwhelmed and humbled by your love and kindness, and I thank God for every one of you.

With love and hope,
Meredith

Prayers for Molly and New Treatment Plan for Me...

Dear friends,

After being diagnosed with cancer, I always feel a special bond when I meet another cancer patient or survivor. The cancer club is the club you never want to join, but it's also one that connects you to a beautiful community of people. One of the most amazing people cancer connected me to was Molly Remmert Rossell, a beautiful young mother from Alabama who is also battling metastatic melanoma.  If you follow my facebook page, you’ve seen my post about Molly, and maybe you have even prayed for her. Molly has inspired thousands with the way she has battled this disease so gracefully, always with a positive attitude. Her strength and dignity have been such a testament to her unwavering faith and has brought glory to God. Though I’ve only known her a short time, and only via phone calls and text messages, she continues to be a blessing and an inspiration. Friends, please take a moment and pray for Molly and her family. The latest update is not good. Molly has been fighting with the best medical care and newest drugs, but the cancer has been relentless. Medical attempts have been exhausted, and Molly is being moved to palliative care in the morning.

Here is an excerpt from her sibling’s latest update: “So, how do we proceed? Molly will be moved to palliative care in the morning. In that venue, the focus will be on making her as comfortable as possible. There will not be additional medical attempts to combat her cancer and surrounding complications, as those attempts have all been exhausted.  More significantly, how do we proceed with the prospect of her (likely imminent) departure from this life? Simply, we do so as she would want us to. Prayerfully. Hopefully. Trustingly. Joyfully. For those traits are the characteristics she’s shown us throughout her entire life. And in about as graceful a manner one as one is humanly able, if we might say so. She would also want us to focus on the eternal peace she will realize in her home ahead, whenever she may enter it. For she is an Easter Person, and we are Easter People who put all of our trust not in this fleeting world, but in the resurrected Christ and in His everlasting world of Heaven above.”

I was grieved to read this update, and shed many tears tonight. I am also inspired by the faith of Molly and her family – as they are grieving this news, they are still trusting Jesus with Molly’s future. They know Molly belongs to Him, and that He will carry Molly into complete healing and restoration, if not on earth, than certainly in Heaven. Their hope is anchored in Jesus, who brings beauty from the ashes and makes all things new.

Thank you for praying for Molly and her family, and thank you for your continued prayers for us. We received some unexpected news last month. Long story short, there is actually a clause in my clinical trial paperwork that says any complete responder has to exit the trial. This was only discovered after the scans I mailed to Boston got lost somehow, and the protocol office didn’t want to clear me for my November 16^th treatment that I showed up for. This was a shock for my medical team and for us. So, as of November 16^th, I have been officially out of the trial and off of treatment. I told my mom I feel a little like someone took my training wheels off before I was ready to ride my bike on my own.

We are flying to Boston on Tuesday of next week for an early morning meeting with my oncologist on Wednesday. There are a few options for us – though I can no longer be in the clinical trial, one of the drugs I was taking has recently been FDA approved, so I have access to it (street name Opdivo). The other option is to do nothing for 12 months. If I stay off of treatment for 12 months, and the disease comes back, I can reenter the clinical trial. We will see what my medical team advises on Wednesday and go from there. The good news is that I can get Opdivo anywhere, now that it is FDA approved. So, that likely means no more back and forth to Boston every other week. We will have to travel there for a few follow up visits required upon exiting the trial (30 days after, 60 days after, and 100 days after). Possibly more. We just don't know yet.

I’ll share the longer version of this story at some point, but we are thankful no one caught that clause in the paperwork in June when I got the official NED report. I was able to get two more complete cycles of treatment that I technically should not have received. The crazy way I actually got into this trial, and the crazy way I got out of it are too extraordinary to not be divine. I believe God’s hand has been all in it and through it, and that has really given me an extreme peace about whatever my treatment plan is moving forward.

And an even stranger/funnier/awesome thing that happened on that trip to Boston was my cab ride from the hotel to the airport. I was still in a little bit of shock after receiving the news of my abrupt end to treatment when I got in a van to head to the airport the next morning. My Haitian driver was very chatty and asked me where I was from. When I told him Mississippi he asked, “Well what church do you go to? I know EVERYBODY in Mississippi goes to church.” I told him ALMOST everybody does, but that I HAD to go because my daddy was the preacher. ;) We chatted a little about church and he asked what I was doing in Boston. I told him I was here for cancer treatment and he got really quiet. After a few moments of silence, this precious man started praying the most beautiful, fervent prayer for me. Not knowing I was in remission, he thanked the Lord for healing me. He prayed me all the way to the airport and ruined my mascara. I’m telling you right now that Jesus showed up in that cab.

 

And as I look back over this entire cancer experience, that’s been the case. Jesus has just shown up for me. Through every high and low place, He just keeps showing up. Whether I ask Him to or not, and regardless of what I have done or haven't done. He is that good. Even in the hard, awful, sad, tragic things, he shows up. I’m thankful that there is more to our story than just this life on earth. But I am thankful that He gifts us with this life too. And I am so eternally thankful that He gifts us with you all, who have prayed for us and carried us through the past year. There is just no way I could not make it without your support. Thank you for the incredible ways YOU continue to show up for us.

I will update you with the new treatment plan after our meeting on Wednesday.

 

With much love,

Meredith

All Clear Once Again

Meredith had another round of scans again today, including an MRI to check her brain. Once again, we celebrate another clear report! Official report from Boston will come later, but initial report is that everything still looks cancer free!!
I had the pleasure of traveling with Meredith on her last trip for treatment, and we were excited to hear that her white cell count is back up into normal range. More good news!!
Thank you as always for your prayers and support. Our God is good!

One year later

Meredith just finished one year of treatment! When celebrating this milestone with her doctor, he mentioned that the trial sponsors want to extend the treatment for another year. So...possibly another TWO years of traveling and infusions and blood tests and pricks and exhaustion. Initially it felt like a punch in the gut, but gratefulness remains our strongest emotion.

Meredith's white cell count is pretty low, so please pray that number will come back up especially as we enter flu season! This is one side effect of the treatment, but we are praying that she can stay healthy and continue to fight some of the other side effects including exhaustion and insomnia - what a combination!

As always, we are thankful beyond words for your prayers and support. As we celebrated the milestone of "one year later," I never could have imagined how well she would be doing. Watching her play with and dote on her children often makes my eyes fill with tears, remembering the fear of a "14 months to live" diagnosis last year. God is so good and merciful!!

One Year Out...

God, your saving acts reach to the skies. You have done great things. God, who is like you? You have sent many bitter troubles my way. But you will give me new life. Even if I’m almost in the grave, you will bring me back. – Psalm 71: 19-20

I am way overdue with an update and before I update you on my current status, let’s take a minute to revisit my official No Evidence of Disease report, shall we?

This was pretty much the reaction all around on Floor 8 of the Yawkey Cancer Center, and this is the reaction I imagined having with all of you who follow our story and are always with me in spirit. BEST DAY EVER!!!!

Rewind to end of May, seven months into treatment. After getting a preliminary clear report from a Tupelo radiologist May 26, I was hesitant to get my hopes up. The radiologist at Mass Gen had been reading my scans as no change since December 2014, even though the report from Tupelo cited significant changes each time. Fast forward to June 3 in Boston. Dr. Sullivan did not have the radiology report during my office visit, so I went up a floor to the infusion center for treatment as usual. About an hour into treatment one of our research trial nurses came bursting through the door, official report in hand. “As soon as we got the CR email I printed this out for you because I knew you’d want to frame it!” she said. “What is a CR?” I asked. “Complete Responder!” she squealed. I held the print off in my hands and let my eyes focus on those two glorious letters…CR, that she had highlighted in neon yellow. And the tears just started falling. Then there were lots of hugs, squeals, more tears, high-fives, fist bumping and a steady stream of staff, some whom I had never met, coming into my room for congratulatory hugs. We’ve basically been celebrating every day since, hyper-aware of God’s goodness every day I get to wake up cancer free.CANCER FREE, y'all.

It’s a report SO FEW people with my diagnosis receive, and to say I continue to be overwhelmed with gratitude is a gross understatement. The Lord has answered my cries, our cries, in a HUGE way. After just seven months of treatment, the tumors have all disappeared. Un.be.lievable. Miraculous, really.

June 3 was such a significant day for us, and one I will never forget. But today is also a significant day.

Today is the 1 year anniversary of my diagnosis. Exactly one year ago Vic and I were sitting on my parents front porch swing, staring at our cell phones, waiting expectantly in heavy silence for the call with the results from my lung biopsy. Dr. Victor called Vic’s phone and the conversation was just a few sentences long. I could tell from Vic’s reaction that this was the news we had been terrified we might receive. After taking a minute to swallow the news and compose ourselves, we had to walk inside and tell my mom and dad. I tried to appear strong and hopeful for my parents and my family, but my heart was full of dread for what this news meant. We stood in the kitchen, not really knowing what to do next. I looked out the back kitchen window and saw Madeleine, barely four years old and Charlotte one year old by one day happily playing on the playground. I silently wondered if I would be alive for their next birthday. How much time did I have left to hold them, comfort them, teach them, love them? I felt trapped in a story that could not possibly be meant for me.

Four days later we were sitting in an oncologist office in Los Angeles listening to doctor tell me I had approximately 14 months to live. Gut wrenching.

The next 6 weeks were a blur and filled with an unplanned move to Mississippi; doctor appointments; second, third, and forth opinions; research, research, research; and a LOT of prayer. Even with the stress of trying to find treatment and the uncertainty of my condition, we began to see God’s hand in midst of the turmoil.

That is why today is significant for another reason besides our diagnosis anniversary. Today also marks the day one year ago when the avalanche of prayers began on our behalf, when love was poured out lavishly on us by friends and strangers and the comfort that comes from Christ visited us in a way I had never before experienced. I have never ever felt so loved and so humbled. Incredibly, peace came down and rested on my spirit in the midst of the most fearful time of my life. Grief was intertwined with comfort, and fear was overpowered by peace and great assurance that God was with us and in complete control. God really is good enough and powerful enough to gift us with comfort and peace in life’s most excruciating moments.

After spending several weeks stressed and exhausted about which treatment path to take, we were disappointed when we were told the clinical trial we felt was my best option was completely full. No open spots. The option we had left was not very promising and the statistics looked grim, but we knew time was of the essence, so we decided to start treatment the following week.

On the plane ride home, God comforted me with Psalm 139:13-16 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

He reminded me that He knit my body together and He knew EXACTLY what medicine my body would respond to, so I needed to stop worrying. I immediately felt settled and confident about starting treatment. Two days later, on Monday morning, the onc called us to let us know that there was actually a “hidden” spot in the clinical trial (our first choice) that no one was aware of, and it was mine if I wanted it.

Isaiah 12:4 In that day you will say: "Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted.”

I started treatment at the end of Ocotober 2014 and had my first scan in December. The radiologist was shocked but thrilled to report my tumors shrunk in half after just one cycle of treatment. Every scan since has been better than the last, and the doctors have been amazed at my progress. Last I checked, I am still the only complete responder in this particular trial, but I am praying that more will follow!

God has grace has been so evidence to us as so many of you have stood beside us the past year in incredibly powerful ways - holding us up in prayer, giving to us financially, the notes, the texts, the food, the calls, the visits… caring for us in countless ways. It’s been the most humbling experience of my life. That you would take time to remember me in your prayers....in the midst of all of life's busy and hard...There is no adequate way to say thank you. You are part of our miracle, and your support continues to spur me onward as I continue with my treatments. I thank God for you every day.

We flew home after that NED appointment and pulled up to my parent’s house to pick up Madeleine and Charlotte. They ran outside to greet us, yelling “MOM!!!” and as Madeleine clung tightly to my leg, I lifted Charlotte up for a kiss. She cradled my head in her chubby hands, looked me in the eyes and said, “my momma.”

Y’all……I get to stay here a little longer and be their momma.

One year ago I was on my knees crying out to God with such urgency it left me exhausted. I begged Him for more time. I pleaded with Him to let me live here with my people for a little longer. And one year later, I am looking to the future with a renewed hope. I feel free to dream again. God has been so incredibly gracious and good to me.

So what does life after the CR/NED report look like? I will continue treatment for the full 24 months, so I am still traveling to Boston every other Sunday for a Monday infusion (but my September treatments will be on Wednesdays). I am on schedule to finish up in November of 2016, so we have a ways to go. I would love to speed things up because I am just so ready to feel good again, but this is a marathon, not a sprint. And I want these drugs as long as I can have them. Plus, I love telling people on the elevator that I'm just here for the illegal drugs. So there's that.

My veins are hanging in there! The primary side effect I am battling is fatigue. My white blood count has been too low the past month, which just means I’m more prone to getting sick and intensifies my fatigue. I am learning my limits and trying to rest when possible, and I’m taking full advantage of the days when I feel well. Even with the fatigue, I’m so thankful I can still function and enjoy life. My neuropathy is still occurring in my feet, but not nearly as frequently. Nausea comes and goes, but is manageable with medicine. Overall, I’m tolerating the drugs really well.

Because the medicine is so new, no one has any real idea about the durability of my remission. I am in a Phase I trial, so there is no long term data available yet. My goal is to just being thankful for the here and now instead of focusing on the “what-if’s” or the “how longs.” It’s a work in progress, and easier said than done. But I am so grateful to still be here, and to have the opportunity to hope and believe for many more good years. God's grace and mercy has sustained me every second of the past year, and I know He will continue to walk with me every step of this journey.

I have adopted Eugene Patterson’s definition of hope: “Hoping does not mean doing nothing… It is the opposite of desperate and panicky manipulations, of scurrying and worrying. And hoping is not dreaming. It is not spinning an illusion or fantasy to protect us from our boredom or our pain.It means a confident, alert expectation that God will do what He said He will do. It is imagination put in the harness of faith. It is a willingness to let God do it His way and in His time.”

Thank you, thank you, thank you for your amazing support, friendship and prayers.You just have to know I could not have made it without you.

"Friendship is one of the sweetest joys of life. Many might have failed beneath the bitterness of their trial had they not found a friend." - Charles Spurgeon

Love to you,
Meredith