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,