There have been many times when I’ve wanted to post in the past week – so SO many things have happened in such rapid succession – but it kind of just seemed more appropriate to wait until I could write with certainty about certain details that were hanging in the balance. I also didn’t want to get anyone’s hopes up or even get my own hopes up publicly. Perhaps writing about that – the actual rise and swell of hope in waiting periods – would have its merit. But it’s such an uncomfortable thing, getting excited about the possibility of something in a public way, because if it doesn’t pan out, we have to then share our disappointment, which can be really humiliating. I think this is a pretty universal experience – let’s face(book) it, we ALL live our lives in public these days. I experienced this a lot with dating when I was younger – I’d be hanging out with some tattooed schmuck for two weeks and I’d tell everyone who would listen about my new awesome boyfriend that I was totally gonna marry. Then, when two weeks later, people would ask about my future husband, I’d have to explain, red faced, how he actually had a girlfriend, or liked guys, or liked icky drugs, or was too into me or- the worst and probably most frequent- just didn’t really like me back. I digress. Point is, I wanted to be sure before I shared.
So, last I left you, I had the possibility of enrolling in an EAP (which actually stands for ‘expanded access program’ as opposed to ‘early access’) at NYU, contingent on both the start date of the study itself and the results of my scans. Here are the cliff notes on what has happened.
Wednesday morning, I got a call from Dr. Wilson, who told me that the study was officially open. Woot! That afternoon I went in for my scans. I got another call from Dr. W on Saturday evening, saying that my scans are clean, save for the two mets we already knew about, and I was offically invited to join the EAP. I had my screening today, signed all the consents, got the whole rundown, a fat handbook and received a schedule of all my appointments for the rest of the year. My first infusions are this Thursday. Exactly three weeks from getting off a plane, bewildered, to starting a treatment I am thoroughly confident in. If that’s not the definition of efficiency… it really all is the best possible scenario, and I’m trying really, REALLY hard to let go of the slight echo in my head of the other shoe dropping.
There’s so much I want to say about my office visit today that I almost feel like I should write about it in a separate post. Every person I’ve met in that office has been just a gem, and I imagine by the end of this year, each will have entire posts dedicated to them. Ariel was able to meet me, and I think she would agree that despite the bulk of the conversation revolving around potential side effects and the actual mechanics of the drugs I’ll be taking, the dialogue between myself, Ariel, Dr. Wilson and Crystal (one of the nurses on the EAP study) made it feel more like a get together with friends than a doctor’s appointment. That said, I walked away with a lot of information. I also learned that Gambia is only the size of Manhattan and completely contained within Senegal.
I’m going to separately post the details of what’s to come, medically, for me, here.
In other news, I’ve learned how to crochet, have gotten hooked (to my chagrin) on ‘the bachelor’ and (not to my chagrin) on ‘the missing’, have nearly completed my treatment and crowdfunding short script for a horror feature i’ve been developing for a while, decided to rewrite one of my first features, about a woman about my age battling cancer, to make the cancer stuff less generic (it’s SO generic right now… what an affront to the impact of this disease), have had some really great coffee chats, movie dates and laughter filled, delicious home cooked meals with family and friends, some of which oscar was invited to (I promise i’ll replace that Olaf doll, J and that soccer ball, L), have repurposed my first piece of furniture, a hobby I fully intend to pursue, have created (with the help of my parents, who have been as welcoming and supportive as humanly possible) a perfect bedroom and office environment. My friend just asked me, in a facebook chat, how things are going on a scale of 1-10. I answered 9… the cancer’s got to knock it down at least by 1. I really can’t complain, at least not today.
On a final, yet important note, I have decided to deactivate my YouCaring fundraiser. A little more about that here.