My first MRI since completing radiotherapy and chemotherapy was clean…. YES.
This gives me two months to take a deep breath and relax.
The nanosecond we heard the news, a cold sore popped up on my lip. Next time I need valium or something to dampen the anxiety.
But oh the joy. Such a relief. I got so anxious I developed a twitch, noticeable only to me, on the left side of my upper lip. I feared this was a sign of tumor regrowth, even if on the wrong side of my body (my tumor is in the left side of my brain, meaning any recurrence is likely to show signs on the right side of my body). Funnily enough, the twitch has now switched off. Ha!
Now we look forward to the next wave of treatment. I tell you, I’m so cutting edge. It’s exhausting being at the forefront of cancer treatment fashion. One minute I’m infusing myself with the immunotherapy that’s turned President Carter’s cancer around, the next I’m preparing to shave the little hair I have left, in order to wear a bunch of electrodes on my head.
For years and years we’ve treated cancer with three weapons: surgery, radiotherapy, chemotherapy. While the world’s labs have been working away at diving deeper inside our bodies to find answers to cancer cures, 78 year old Professor Yoram Palti dreamt up electrotherapy while settling into retirement in Israel. No doubt bored with not working, Palti dusted off his ideas from his doctorate days, decades old.
He told ‘Globe: Israel’s Business Media’: “My friends would sometimes ask me: ‘Why not search for a cure for cancer?’ So I did.” Inspired by an equal love of medicine and engineering, he decided to integrate electric fields with living tissue. He set up a lab at his home in 2000 and, 16 years later, has seen the Phase 111 trial of his therapy for people newly diagnosed with brain cancer, like me, halted because its success meant everyone on the trail should be offered the treatment.
At a basic level, how it works is that I get to wear a backpack that feeds electrodes attached to my head. These electrodes carry highly charged particles that create an electric field and attack brain cancer cells. Specifically, they block further division of cancerous cells in the brain. So this is proven to extend the time between diagnosis and recurrence. This we want, as when recurrence happens, it tends to narrow the time window to act.
My neuro-oncologist – fabulous Dr Fabio Iwamoto at Columbia – said the medical community thought this was bizarre… until they saw the data. Now it’s thought that it will soon become the norm, alongside surgery, radio and chemo.
Closer to home, what it also means is that I’m going to be bald with great white pads stuck to my head for the next -nine months. Plus I’ll grow a sort of 2016 Met Ball techno-tale, in the shape of a big electric lead that feeds into an 8lb backpack full of batteries that will help shift those pounds. Definitely designed by engineers rather than fashionistas. Come to think of it, if only I’d known the theme of this year’s ball ahead of time, I could have challenged the world’s designers to design head gear for Optune that will encourage people to wear it.
The company is coming round next week to show ‘my carer’ how to shave my head and fix the pads and ‘arrays’, something that needs to be done twice weekly. I’ve requested an evening appointment as something tells me Tess and Emma might be useful here. Not that Ed isn’t the most caring partner in the world. But I’m thinking the skills acquired by teenage girls in the hair and make-up department might enable them to demonstrate their particular expertise in a way that complements his support and that delivers the best possible care to my poor beleaguered scalp.
The online brain cancer community is charged/buzzing/literally electric (oh dear, bad puns, but I can’t resist… talk about a gift horse) about how to wear this contraction. Did I mention I’ll need a special cooling pillow from Bed Bath & Beyond plus fan at night, as it generates heat? Oh, and this also means wigs are ruled out…
But what really did it for me was when someone online relayed their experience of being accused of being a suicide bomber when on public transit. Imagine a large electric wire leading from a backpack (containing batteries with flashing lights and alarms when things get too hot – like on the NYC subway in summertime) to a head with electric pads on it… put like that perhaps it’s not unreasonable. This provoked an outpouring of similar tales online, with responses that were strangely practical and solution-oriented, unlike mine which was to guffaw in a macabre kind of way.
Some people make cards they hand out to those staring at them, asking for their prayers, not their fears. Or explaining they have brain cancer and this treatment is a GOOD THING. I think I’ll wear earplugs.
In between feeling in awe of the creative thinking behind this treatment, and relief that its high cost is all covered by our insurance, and dodgy humor at the idea of wearing this contraption, I feel… well. Excited and terrified in equal measure. This is a notable new chapter in the brave, mad, sane, cumbersome and confusing journey I’m choosing.
Next time I’ll tell you all about medical marijuana. Much easier for my head. Ha!