I was back in the chemo chair at Sloan-Kettering yesterday for infusion four of the targeted drug SGN-35 (Brentuximab Vedotin/Adcetris). My mom accompanied me for support, company, and as post-train car driver as I’m a wuss when it comes to handling the Benadryl that I am pre-treated with.
It was a smooth, but slow process. Clinic was running late. It’s just the nature of the beast as the needs of those coming in for treatment and doctor visits are just so variable. Though the infusion is only 30 minutes, the entire process of waiting to see my doctor, seeing my doctor, waiting for the drug to come from the pharmacy, and actually getting my port accessed and the drug infused totals about four hours. Add in the 3-hour travel time each way and there goes the day. Three years of it has taught us how to prepare with good books to read, phone charger at the ready, and loads of snacks.
My blood counts look fantastic. Everything is in the normal range and I don’t even show a trace of anemia, which is very rare for me. The only thing that remains out of whack is my sed rate, which isn’t unexpected due to the lung inflammation and steroid course that I am on. It’s not even registering at greater than 100.
Dr. Moskowitz did notice that I’m developing some thrush in my mouth, which happens with a high-dose steroid course. It’s white and dry and bumpy in there – yuck. I’ll be doing a prescription mouth rinse to combat that. My lungs sounded pretty good and there were no palpable lymph nodes or really any serious concerns to mull over. It was a painless and event-free visit.
We talked some about how we’re looking at my disease as a chronic illness now – something that I can live for a long time with as long as we can maintain control without detrimental toxicity. I asked her to try and qualify me somehow against other HL patients to get an idea of where I stand against this disease. I realize it’s an arbitrary question, but she so thoughtfully talked me through where I’m at, where I’m going, treatments in development for me down the pike and provided me encouragement that I am doing extremely well given how heavily treated I’ve been. She actually said I was a “rock star.” This was a very welcome compliment as I often don’t give myself enough credit and can get very frustrated and impatient with my progress and capabilities. Sometimes it helps to put things in context. I could have it a whole lot worse.