Burning Man and Beyond
Heather and Jerald made it to Burning Man!
We put together a sort of plug and play campsite in VW Bus Camp thanks to so many lovely humans. The VW Bus-shaped hexayurt was given a little TLC and picked up and delivered along with a big swamp cooler. Campmates spent a couple hours setting it up and several folks brought extra solar panels, batteries and gas for a generator to keep Heather’s important equipment running smoothly. The camp really pulled together to make it happen.
They rolled into camp in their VW Bug late Tuesday/early Wednesday of event week and we got them unloaded set up as quickly as possible while they told us their tales of melting parts, a failing fuel pump and an unexpected stay in the hospital prior to leaving for Burning Man.
Heather’s coughing had gotten more intense so they got scans and x-rays to see how things were looking. Nothing new had cropped up that they could see but they felt she may have an infection and put her on antibiotics and sent her on her way. I am paraphrasing what I was told and I know it was a much more serious interaction but in my head I hear Heather telling the doctors to just give her the meds so she could get on her way.
The heat, wind and dust kicked everyone’s ass this year for sure but Heather’s safety and comfort were a priority. The bug was Heather and Jerald’s disability vehicle so they were able to explore BRC together. We had great community shade in camp so there was a comfortable spot to sit and catch up with friends.
Since I left early this year, I only know stories about their experience at BM. They saw lots of cool stuff and renewed their vows in camp but also dealt with equipment that couldn’t keep up with the heat and dust and, ultimately, they had to leave quickly. Luckily, our camp mate - and nurse! - Marlena spoke with medical staff about Heather’s condition and they were allowed to leave at a different exit point with no issues.
The bug had its troubles on the way home too but you all know how amazing Heather and Jerald are at doing repairs on the fly! They made it home to her brother’s in Keizer where they are staying along with Daisy, Forest and Thomas.*
*I’ll mention here that Cheyanne and Betty are being adopted in Portland by my friend Lindsey. Lily is being adopted by LeighAnn and we’re working on an indoor home for Deja-Vu.
I visited Heather and Jerald on Saturday, September 10th on my way up to Portland transporting Cheyanne and Betty. I brought the girls in and they hung out in the bathroom and chilled and Heather and Jerald got to spend some time with them.
They had a meeting with oncology doctors at OHSU in Portland (they have sarcoma specialists) on September 6th. And again, I am paraphrasing….the meeting went well and it was the day before the tumor board met so they are discussing the tumor in her heart as well. Sounds like there will be a new chemotherapy starting up and although she didn’t qualify for a medical trial it looks like she’s a good candidate for immunotherapy using Pembrolizumab (Keytruda). They are hoping to start that as soon as possible.
If I remember correctly, Keytruda is given as an infusion every three weeks. Each infusion session is around $10,000!!!! The OSHU doctors are going to work with Kaiser to get the cost covered by their insurance. Hopefully that will happen but even if Kaiser covers 80%, that’s still $2000 each session. I think Jerald said she needed three sessions…although it may be more. I know Heather said she’d be done by January.
Heather went to the ER before I arrived in Keizer as her coughing was getting worse and she felt pain and pressure in her heart. Scans showed nothing new but there’s a concern that she picked up Valley Fever, possibly in Nevada, which is an infection caused by the fungus Coccidioides. Since she is considered medically fragile, she’s more susceptible to a serious infection. As of today, she’s waiting to get tested for that, to start the new chemo and find out when she can start on Keytruda.
As always, any financial assistance is greatly welcomed and appreciated.
Thank you.