To say these are normal times would be about as sane as thinking you could put a saddle on a brown bear and go for ride. I sort of feel like we’ve all actually been on that angry bear lately, and it has been a strange trip indeed.
I’m writing this from a basement AirBnB in Seattle. Last Wednesday we donned masks and face shields and made the flight down from Anchorage. Two days before that Annette had her post-chemo PET scan. The results hit us like, well, like a bear that decided it no longer wanted you on his back. To make a long complicated medical story short, I’ll tell you this much: by the time she had her appointment with her doctor for proton radiation treatment here in Seattle three days after the scan, some of the best oncologists in the country knew her name and had read the report. Obviously, this isn’t the sort of fame anyone is interested in. Essentially the chemo wiped out a good portion of her tumor, but the scan revealed a very small piece of it still active, and this was something no one had expected. Her doctor here hadn’t seen anything like this during her career (which is why she consulted with colleagues across the country). So while we were expecting glowing results, the glowing results we received were the wrong damn kind of glowing.
Then to add insult to injury, our insurance company – who we’ve spoken to several times about approval for her specialized treatment in Seattle – declined authorization for her proton radiation therapy. This after we had our tickets, car, and lodging purchased for the trip down.
I’m sure when we hit Seattle, the two of us would have looked completely shell shocked and bewildered, but fortunately everyone is wearing masks here, so no one could tell. Our kids did a phenomenal job on the plane ride in masks and shields, mostly because they were so excited, they knew they were going to go spend time with my parents
in Montana, with a promised stop at a zoo.
The Thursday appointment put Annette a bit more at ease. Her doctor assured her that treatment could proceed as planned, though a few more than expected, and that she would do what is essentially a “super boost” of protons to the still active tumor and basically blast the shit out of it. The experts around the country agreed that was the best course of action. Twenty days of proton radiation treatment, Monday through Friday.
That same day they readied her for treatment by creating this high-tech cast of her body. A mold she will lie in to be positioned exactly the same each time. Then they tattooed her in the places where the beams will be delivered. (These tattoos appear as little dots, but I’m sure my buddy Roger Sparks can fix that later.)
When she left the Proton Therapy Center, she had an additional consultation with the oncologist we met with at Hutch way back in March when we ventured down at the beginning of this pandemic. I mention this call only because we did it by Zoom, on the side of the road at first, but then because it was too noisy there, we walked into a cemetery so we could finish the appointment. Aside from the macabre location, this doctor also confirmed that we’re taking the best approach and should proceed as planned.
The next day we made our visit to the Woodland Park Zoo, which our two country bumpkin kids enjoyed (despite our constant admonishments not to pick the fruit and flowers in everyone's yard!) --- and we ate outside at our first restaurant since this all began. With Annette’s lack of immunity, we take the greatest precautions, which everyone should also be taking during a pandemic, but one thing that is comforting is that here in Seattle people are taking masks seriously, inside and out. From the Zoo to restaurants to the parks, people are respectful, and the community has established procedures and protocols. This leads to a feeling of security that we haven’t felt in months.
Saturday, we loaded up and made the trek to Montana. By evening we were in the comfort and safety of my folk’s place on the Missouri River, just outside of Great Falls. A couple days of horseback riding, kayaking, and swimming. After riding that damn bear, I think it felt good to saddle a real horse and take the reins and feel a little more in control. I think if we could have, we would have stayed there with my folks until this virus is all over, but first there is a tumor that needs killing, so Annette and I left the kids behind and made the trek back to Seattle.
She began her first proton treatment yesterday. I can’t go in with her, but from what I gathered when she came out about a half hour after I dropped her off, was that it’s a surreal space aged experience. (I’ll try to get photos.) She lies in the mold they created for her in this time travel looking device, and then the machine comes down towards her face, inches from her body and after a few short minutes a bell rings and she’s done.
The proton radiation is targeted, so as to better protect her heart and lungs from damage from the radiation. It’s a newer form of radiation, with only eighteen or so centers like this in the country. The short-term side effects will be a sun burning of her skin where she’s treated, fatigue, and a burning and raw throat.
Eighteen more treatments after today. She’s in and out in twenty minutes. This will leave us plenty of time to hike and explore around Seattle. We’ve already been walking about eight to twelve miles a day here taking in the diversity of plants and for me getting a taste of the city life I’ve never had (albeit masked and mostly shut down).
The good news is that the doctors are confident in the treatment plan, that we made it down here safely, and that she’s in the right place. The other good news is that thanks to the incredible folks at Hutch our appeal to the insurance company regarding this expensive treatment was approved (again! Whew!).
Finally, the best part of this, is that our kids are having a blast with my folks and that we’ll have a chance to visit with friends and family here in a safe and friendly environment where Annette can get the best treatment available and focus on healing and recovering. We've been at this for a while now. I guess my take away after months of this madness is that bears aren't meant to be saddled. There might be a metaphor being ridden to death there, or it might just be a hilarious image that helps you understand what we've been up to lately.
That’s if for now. We appreciate all the love and support through this. Mask up—stay well, and stay away (at least six feet!).
good to read this update. I was wondering how it was going in Seattle. So glad the kids can be with your folks now in a beautiful setting. Will be holding Annette and you and the kids in my heart during these difficult weeks. with prayers and tumor killing chants to add support as you continue to see the beauty and positives in your experiences.