The page is turning from summer to fall. Every year I look forward to the crisp autumn mornings and the return of the rain. But especially so for me this year, since summer has been a challenging one, full of highs and lows… both for me and for this country as a whole.
The highest point was when I got to experience the total solar eclipse with dear friends at a peaceful farm outside Lebanon, Oregon. It was every bit as captivating and inspiring as I thought it would be – and I was heartened by the knowledge that millions of people across the country were sharing that same experience.
Yet in the same month, the natural world screamed with wildfires in the west, and hurricanes in the southeast. Seattle and the entire Western US – especially the areas around Glacier Park in Montana – could have used just a small percentage of the rain that drowned Texas. This summer has been hot… and dry… and on several occasions smoke from wildfires in the Cascades of Washington and British Columbia degraded our air quality, keeping me homebound to the extent that I started to get cabin fever more appropriate to the depths of winter than a warm summer’s day.
But just as my lungs were besieged by wildfire smoke from the outside, from the inside they may have been getting a taste of the bright future. This week I completed a two-month Phase II trial for a revolutionary new drug – IV Gallium Nitrate.
This is gallium, the “Terminator” metal:
Gallium is a rare earth metal – its most notable property is its melting point of 85.58°F (29.76°C) – making it a solid at room temperature and a liquid at body temperature. While this is mostly just a cool party trick (you can read more about that in the delightful science book The Disappearing Spoon), it bears noting that Gallium’s (GA) second-most-notable property is its similar atomic weight to iron (FE). Iron is what most bacteria need to survive, including multidrug-resistant pseudomonas aeruginosa.
About seven years ago, one of my CF doctors told me about this crazy idea that he and other CF researchers had… gallium had been shown to kill pseudomonas bacteria in a lab, and it might also work in humans. Pseudomonas bacteria pass electrons from iron back and forth, effectively communicating with each other and building a sticky, protective biofilm around themselves. Gallium disrupts this function because when the bacteria consume it, they can’t process it like iron, and it lacks that extra electron that they can use to create their biofilm. (Or something like that… for more details ask the scientists… I’m merely a walking guinea pig.)
This might present a novel way to kill resistant strains of pseudomonas living in the lungs of CF patients. This is important because our longs can become colonized with these bacteria, blocking off the airways and leading to lung disease and… if not successfully treated, death. Over the years and repeated courses of antibiotics to fight these infections, the bacteria can become antibiotic-resistant superbugs, to the point where the only option is lung transplantation.
I will spare you a picture of what that looks like. Here are some puppies.
My lungs have been colonized with pseudomonas since about 1995… but fortunately a combination of vigilance, regular exercise, minimal courses of antibiotics, and luck have allowed me to preserve much of my lung function and keep the little buggers at bay year by year. Still, my relatively stable health and this colony of pseudomonas in my lungs made me an ideal candidate for this study. I completed six days of near-constant IV infusion of gallium nitrate – or a placebo – and then two months of follow-up visits to track the effects.
The human side effects are likely minimal because this drug has already been used in human patients with specific types of cancer, and I didn’t notice any major symptoms during my treatment period. But that said, I shouldn’t talk publicly about the results I experienced until the study has been published and once I know whether i received the placebo (which should happen next spring). I”m “holding my thumbs” for positive news about the results because there is huge potential to improve and lengthen the lives of people with CF.
In the meantime, I was working with the CF Foundation and Pactster to get ready for BreatheCon, the world’s first virtual conference exclusively for people with CF. People with CF can’t meet in person due to the threat of cross-contamination and transferring our bacteria with their various drug resistances (see above). So this is a revolutionary event that actually lets us get to know other people who have a shared experience. I can’t overstate the importance and the impact this has on us as patients, and as people.
Most people have access to support groups these days for help with their major struggles… a health concern like cancer, an addition like alcoholism, or even grieving the loss of a family member. But adults with CF have in some cases gone their entire lives without talking to another CF patient face-to-face. Truth be told, that’s something that motivated me to audition for Allt för Sverige, in the hopes that I might discover a long-lost Swedish relative who was going through the same things that I was.
After months of preparation, BreatheCon finally took place last weekend. I led a morning energy session on Pactster with one of my streaming yoga for CF videos, and also was a panelist at a breakout session about Singing & CF. Most of the attendees in the Singing session were untrained singers, and had some fear of singing in public, so I shared from my experiences as a professional singer with CF and my friend Ashley from Breathe Bravely taught some breath-cycle exercises to help with finding a strong base of breath support.
That’s all I can say on that because all conversations need to be private and confidential…what happens at BreatheCon, stays at BreatheCon. But suffice it to say that I walked away with some new friends. Being able to talk freely about what you’re going through – and feeling like you’re being truly understood – is incomparable. Don’t get me wrong, I love my family, my friends, my doctors… but there’s nothing else quite like the moment when someone eagerly nods and smiles and says, “Me, too! I thought I was the only one!”
The day after BreatheCon, I started rehearsals for the opera Martha by Flotow at Puget Sound Concert Opera. I was struck once again by how truly lucky I am to be able to sing opera even with this mad battle going on in my lungs – a rare gift indeed. You can hear me sing the comprimario role of the Farmer’s Wife next weekend, Sept 23-24. Info is at Puget Sound Concert Opera.