Sunday, July 24, 2016
Seems like it's about time for an update on my treatment, what do you think?
Quick recap: May 20 I started a clinical trial using immunotherapy combination treatment to allow my own immune system to start fighting my cancer. I fly from Nashville to Miami every Friday for check ups, and every 3rd Friday for my immunotherapy infusion. It seems like the tumors I can feel are shrinking, even after only 2 months of treatment! More on that in the next post. I've had some side effects during this time, most notably fatigue that has ranged from mild to overwhelming, especially on top of my radiation-induced brain fog.
And there you have it!
My last 2 appointments were just lab checks with a doctor visit and went smoothly and easily. One lab value was abnormal and we swapped out my heartburn medicine between the two appointments- See? Super boring and easy! John has stayed in Nashville for these last two trips to give sweet Carley Jean some stability, so I had to drag some others along with me to the appointment. One week my Miami angel friends/pseudo-moms Carolyn and Debbie went with me. They drove and took notes in the appointment and everything! Most recently my dad accompanied me and we rounded out the weekend catching up and recharging in Naples. Next week I think John and I will take Carley Jean with us to appease the nurses that fell in love with her and scold us for not bringing her.
My fatigue has been improving slowly, with exceptional improvement this weekend. Vacation, I'm tellin ya!! I still have some brain fog, but I'm learning how to manage it and to notice the times of day when it's at its worst. Brain fog feels like staying up all night, then trying to focus well the next day. You forget what you were just doing or thinking, can't focus listening for very long, slow processing- things like that. Sometimes it's bad and sometimes it's not, and I'm learning to predict when those times will be.
And my eyebrows grew back! They thinned quite a bit without tooootally falling out because of the radiation, but they're back now. And so is some of my hair! It's mostly patches of fine hair at this point. Turns our hair doesn't grow back all at the same time. Who knew? It looks a little like someone took an electric razor and shaved straight down the center of my head, which I don't love, but it's funny how straight the lines are along the fake razor line. I've enjoyed being bald for the most part, it's hassle free and feels amazing to rub it and is way cooler (temperature). And my head is a nice round volleyball shape, so it's not super funky looking. There's a spot on my scalp that I would have bet my life was a cyst, but it's responding to the treatment and shrinking, so who knows what it is. I wouldn't want to be bald forever, but it's been nice while its lasted.
In answer to a commonly asked question, I will be on this trial for 2 years most likely. After August 19 I will start traveling only once every 3 weeks to Miami for an appointment and an immunotherapy infusion. 2 years is a long time, and may seem burdensome, but this is guaranteed cancer treatment that's working and free since it's covered by the drug companies and my insurance. That's a tremendous blessing. TREMENDOUS. I waited a long time for that, and God worked the timing just right to bring us to this place, to this trial at this time. Wow, how cool.
I can't say enough how grateful we are for your prayers and support. We could never do this alone. I am HONORED that you'd want to read this, that you care enough about me as a friend/family member/acquaintance/total stranger that you would want to continue to follow my progress and story. Honored. Thank you.