Here’s the abridged version of what’s happened since my postcard. I was on the Vem/Cobi Combo for exactly three weeks. Since Cobimetinib (The MEK inhibitor) is a three week on, one week off med (like birth control), I was due for a week with three less daily pills to pop. Alas, I broke out in a full body rash. Itching and rashes are, in fact, a common and not a health-threatening side effect of the drug combo. But because of that one time anaphylactic reaction to the other BRAF/MEK combo, Melissa, my oncologist, wanted to be super precautious. And so, once again I was pulled off the meds, placed on a regimen of prednisone (steroids), a claritin/benadryl cocktail and pepsid to offset any GI issues caused by all the aforementioned drugs. I wasn’t itching to blog, simply because, to me, it was the ‘same old, same old.’ It wasn’t so much that I couldn’t find some interesting way to make it read as the fact that I couldn’t find a way for it not to be boring to write.
The good news is that I’ve been feeling absolutely fucking fantastic, and because the vemurafenib has a short half-life, there was a brief window in which I could enjoy the beautiful weather. I mean, it’s not like I was sitting on a beach oiled up in a bikini, but at least I could walk the fifty feet from the car to the house without tucking my hands into my sleeves, slathering my lips in a half inch of zinc and pulling down the brim of my hat like I was hiding from the feds. On my last visit to NYU, I had a good, long talk with Melissa about the photosensitivity thing and she assured me that if I’m super duper vigilant about sunscreen and avoiding direct sunlight during peak hours, I should be able to live somewhat normally.
During this visit I also got the good news that my hemoglobin is back to normal, and the rest of my lab results reflect that all my inner workings are functioning normally. Except my thyroid… my TSH levels (thyroid stimulating hormones, explained HERE for any of you who get off on the sciency bits of all this) went through the roof. Strangely, this is most likely still a sustained side effect of the ipilimumab infusions I received over a year ago. Oh, the thyroid gland. She’s a mischievous little bitch, she is.
But the overall stellar lab results, coupled with the fact that I’ve been eating like it’s my job and pooping like a champ tell us that, at the very least, the tumors haven’t grown. If they had, they’d be wreaking havoc in my GI tract. Whether or not there are any new mets (mets = metastases = tumors) remains to be seen. I’ll be having a set of scans at the end of this month to see what’s what. According to Melissa, these scans won’t be a true measurement of how well the BRAF/MEK inhibitors are working since I haven’t been on the drugs consistently. That said, I’m back on the vem/cobi combo. It’s day four and uneventful so far.
On another note, this blogging thing has finally started to pay off. Not only was I commissioned to write a journalistic article about the benefits of blogging through an illness by a major medical magazine, but I was also invited to become a blogger for their website. The pay for the article will be enough to help out with some of the trips to weddings I’ve RSVP’d to attend in coming months, and the blogging gig could be an additional, steady source of income. Woot! The blog posts will still be personal, just more topic-oriented and universal, so they won’t usurp the need to update this blog. My plan is to post every ten-ish days, and since I get paid per unique visitor, I WILL be hittin’ y’all up to share those musings. And, as you can see, I’m training myself to start my sentences with capital letters (there ya go, JBizz).
On another other note, yesterday would have been my dad’s 69th birthday. I haven’t written much about my dad on this blog. He was a brilliant man who, largely as the result of his bipolar disporder and partly due to his Irishness, fell victim to the bottle and never lived up to his potential. At fifty-two (when I was twenty-five), he shot himself in the head. I’ve been building a monument to him in the form of a novel, which I WILL finish one of these days, and I’ve been sprinkling his ashes in waters around the globe since his death. Some of these ash-sprinklings have been spiritual, some uneventful and some were just downright comical – the ‘best’ of which I documented in my essay, Pura Vida, which you can read by clicking HERE.
To commemorate his birthday, last night Oscar and I walked down to my favorite local canal with an empty Nexium bottle full of his vestiges, and we sat along the wall where the local sailboats are moored and listened to Jethro Tull’s Living in the Past. Usually when I pause for too long on our walks, Oscar gets whiny and restless. Last night, he just laid down and chilled. My dad would have absolutely adored this dog of mine. As I let his remains fall into the wind-chopped water, the snappers were jumping. Oh what I would give for one more day of casting and reeling and shooting the shit with that man. He may have been a troubled soul, but he sure was a good dude.
As for the title of this blog… it’s a lyric from Feeling Good, first recorded by the late, great Nina Simone in 1965. Give a listen HERE if you wanna start your day off as good as I have. With all the cancer bullshit that’s transpired in the last couple of months, I have truly learned how to embrace the good days. With all the bullshit that transpires in everyone’s lives… you should, too.