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.
I do need that reassurance sometimes and it helps most to hear it from the medical professional that deals so intimately with this disease and those of us battling it. What I love about my doctor is that she is positive but realistic with me. She doesn’t blow smoke up my ass. She knows I am educated about my disease and she understands my goals for quality of life. This mutual understanding is invaluable.
While I started up with treatment my mom went to grab us food and we noshed on wimpy wraps that made us laugh at their ingredient sparseness and ridiculously moist and satisfying scones from one of our favorite little NYC joints: Alice’s Tea Cup.
As soon as the Benadryl pre-med finished dripping in I was out cold, coming in and out of sleep all confused about where I was. My mom watched over me and some Olympics coverage on the little overhead TV until my treatment finished and I was unhooked. I had no coughing spasms or bronchial tightness as I have in the past. Hopefully this is a sign that the course of steroid treatment worked and that the drug is not exacerbating my lungs. Time will tell.
Our train ride home was equivalent to a wooden roller coaster ride it was so bumpy and erratic. Whoever was conducting that MetroNorth train felt the need for speed or else our car wasn’t quite attached right because we were shaking and rocking the whole time – not the most comfortable of treks home.
We arrived after the final hour-long stretch of road from New Haven to Tariffville to our deck table set for three complete with flowers and candles and Ray LaMontagne playing in the background. Craig had prepared a meal of coconut and panko-encrusted chicken and Parmesan baked green beans from my parent’s garden. My mom and I were more than happy to indulge after our paltry lunch and unnerving train ride. It was quite the treat to arrive home to after a long, long day. The three of us enjoyed good conversation in the fresh summer air with Sammy underfoot nuzzling around for one of us to give her head a pat.
I slept hard last night and made it through until 8 a.m. – the latest I’ve slept in a very long time while combating these hyper steroid effects. Today has been foggy and achey. My body is very, very tired and swollen. My eyes are burning and my brain slow and irritable. It’s a typical post-chemo day. I know it will pass, but I do mourn every time I feel like this again as it triggers difficult memories and realities. So today I’ll let myself mourn and tomorrow I’ll start picking myself back up again as I look forward to a weekend on Cape Cod where the real healing will begin.