It has been far longer than I would have liked to go between blog posts, so let's get right to it.
After coming out of a rough rough week, I had my screening tests in Miami May 17-20, and was able to receive my first dose of new medicine on May 20! Axitinib is a pill that I take twice every day, and I monitor my blood pressure before each dose. Easy peasy (annoying, but easy). In May of last year I started taking a cousin of this drug and had some significant fatigue, but the axi fatigue seems to be more manageable at this point. Thank goodness!
May 27 we flew back down to Miami from Nashville for my first infusion of Pembrolizumab, the IV immunotherapy that is part of the clinical trial regimen. The infusion only takes 30 minutes to run, plus an hour of saline afterward. Unfortunately, there was a lab order missing that added 3 hours to our day, but otherwise infusion days should only take a couple of hours.
All of our visits to Sylvester Cancer Center have been great- short waits, kind service, super friendly staff. They let CJ hold the vacutainers for blood draws and she hands it to the phlebotomist when they ask for it. How sweet is that?! I realize as I am writing that this probably sounds super strange and gross, and while you're totally right, it's also a huge victory for this unpredictably skittish little girl to face something so big and grown up with smiles and joy. There are so many parts of this journey that she can't understand, so we let her participate in this process in the ways she can. Even the super strange and gross ways.
Every Friday from now through early August we will be flying to Miami for my clinic and lab visit. Every third visit I will have an infusion of the pembro. So my visits will essentially be lab, lab, pembro, lab, lab pembro. The lab visits also include a visit with the doctor and are very quick and easy appointments!
Side effects have been manageable so far! The pembro has caused a dry(ish) cough and I mentioned the axi has caused fatigue. At this point, its difficult to identify the source of my fatigue. Brain radiation, axi, pembro, and metastatic disease all cause fatigue. Each has its own nuance, so I can sometimes discern which type may correlate with which offender. But not always. So fatigue is the stand out side effect for sure. I have a nap everyday from about 2-4 and grab about 10 hours of sleep, even if it isn't convenient, wanted, or welcomed. There is a constant mental dullness that hangs around- part of the fatigue. A baby brain fog, if you will. More than the I-need-a-nap fatigue, brain fog fatigue is just the absolute worst. It's like dialing your best you back 2 notches at all times. It's totally livable, workable, manageable... but it's just not the same. We all want to be our best vibrant selves at all times, and man isn't it frustrating when there's interference preventing you from being your best?!
Our 3 year old firecracker has gone with us on every trip since the screening visit, and it's gone relatively well. When we stepped onto the plane the first time, she looked down the full aisle and said "I don't want to go, I need to go back to the airport, I don't want to go anymore." As we walked to our seats in the middle of the plane, her volume and distress started building, and for the next 10 minutes she sat in her seat crying and yelling "Get me outta here! I meed you to get me outta here!!" We turned on Dora and she was totally fine for every flight after that. That's a fair picture of how many of our outings and experiences are with CJ: either they start out very poorly and drastically improve, or they start out great and drastically worsen. Such is life with a threenager. She will only be going with us a couple more times around other travels, then staying home for most trips after that point.
We stay with a wonderful family in Miami and were privileged to meet several new friends at their church one Wednesday night. Last week we went on our first ever vacation as a family of three for some very much needed rest and reset. Next week we will be with my family at the NC beaches for some very much needed family time. Since they live 7 hours away, we are excited about spending good quality time with them.
Your prayers are to meaningful to us. We feel loved and surrounded as we find our footing in a new season once again. Thank you for praying specifically for side effects and travels, for our families and our friends. Keep em coming!!