Howdy, Folks – this is going to be a long one.
Had my bimonthly visit to UC Irvine yesterday – MRI still looks good. Woo-hoo! Also got the results of the EEG I had on my birthday to test for seizure activity. Same results as last time – no seizure activity detected. However, this time the test was able to capture an abnormality – a “slow” response on the right side of my brain. The doctor explained that this is not at all unusual for a brain tumor patient. And it actually makes me feel somewhat “validated”, in light of all those occasions of “forgetfulness”. LOL. Really makes me want one of those T-shirts that say, “I had brain surgery – What’s YOUR excuse?” 🙂
It’s been a busy couple of months since my last update. Within hours of my last post, Novocure posted my video journey on their website. They have since updated it with some photos at the end, showing me using the new smaller device. For any of you interested in seeing it, go to optune.com/resources/videos and scroll down to: “meet Marcia”.
The day after the video was posted, we were asked to participate in an Optune symposium at the SNO (Society for Neuro Oncology) Conference in Scottsdale, AZ on November 18th.
Novocure would be just one of many vendors at the annual conference doctors attend to get the latest scoop on neuro-oncology research and treatment.
Our NO, Dr. Bota, would be presenting the latest clinical trial results for Novocure (the makers of Optune), and they wanted to highlight my case, along with that of another patient and her caregiver from Washington. They picked up the tab for our transportation, lodging and meals – and we stayed in a lovely resort hotel. If I have managed to manipulate my graphics correctly, the picture at the top of this page should show me and BT on the stage, during a Q&A with Dr. Bota. I’m guessing our audience was a couple hundred doctors. Along with the longer-term data results they were presenting, they were wanting doctors to actually see and hear from patients and their caregivers.
It was a really fun trip for us. We enjoyed meeting the other patient, Jayne, and her husband, Carl. It was so cool to hang out with another couple who could totally identify with not only our brain tumor journey – but also the Optune lifestyle that we now live. And we already knew from our experience with the making of the video that all of the Novocure personnel were warm, friendly, compassionate and talented people – but we got to meet a lot more of them. We had the ears of the top people in the organization, and they truly wanted our input and design ideas.
We were invited to an awards dinner where Fran Drescher “The Nanny” was the keynote speaker. After having uterine cancer 16 years ago, Fran made a full recovery and started advocating for early detection and consumer education. She was very entertaining, and, yes, that really is her NATURAL voice. 🙂 Fran was very friendly and gracious and came to our table to speak to us. She spent a good twenty minutes with me, BT, Jayne, and Carl.
And, if technology is once again on MY side, I will be posting a picture here.
Later in the evening, I was introduced to yet another Novocure employee who asked if I would be willing to give a telephone interview to the BBC! She didn’t have all the details but asked if she could put a reporter in touch with us. Sure . . why not?!
Within 3 days, BT and I were on a conference call with Novocure’s media/legal dep’t.s for an hour (offering guidelines for speaking with the media), followed by a half-hour interview call from “Andy” in the UK.
So here’s the deal as I understand it. One of the BBC channels is preparing a pilot for a daytime, doctor-hosted show, called “2nd Opinion” where they will take a look and poke fun at the latest health headlines. Their goal is to be able to investigate the claim to the point of either debunking the claim, or validating that it IS true science. (I Googled the show and I see that the category is described as “Comedy/Science”. I sure hope I end up on the right side of that forward slash!!) Andy had been in touch with Novocure to understand the science behind it and he asked if he could to speak with an actual user of the device. He couldn’t find a Brit to talk to because the national healthcare in the UK won’t pay for Optune and very few people there have any kind of private insurance. So, out of 3000 users in the US, somehow I was the logical choice. (????) Go figure! (By the way, I was simultaneously baking pumpkin pies while giving him my telephone interview – the Brits have no appreciation for Thanksgiving apparently.) The pilot is slated to air in January I believe. Of course, in retrospect, I’m a little leery of the whole deal – especially after reading that this is to be a comedy show. I know I didn’t say anything that the FDA wouldn’t like (I had good training) but I have no control over how I may have been quoted. Fortunately, I will probably never have the opportunity to see the show. 🙂
So that’s pretty much how we have been staying busy. And now Christmas is here! Wow! That came quickly!
BT and I are both doing well and we wish you all good health and good spirits. I can be pretty certain I won’t get Christmas cards sent. But there is still a chance I might send out my usual New Year’s Card after all the tinsel and fairy dust settles.
Love to all –
Marcia and BT