My husband, Jordan, has brain cancer. He’s had it for a while—at least a decade—but this time it’s not fucking around.
We found the original cancer on August 23, 2013. It was a Friday, five days before our ninth anniversary—the day Jordan bought a brand new motorcycle and went out for a ride. He seemed fine that day. He was excited to start at SDSU the following Monday and to no longer have to ride his bicycle to school. Looking forward to riding with me all weekend, he set off with a friend to enjoy the new wheels immediately after signing the paperwork.
Several hours later I got a phone call that he’d been in an accident. There was no visible blood and he was talking—but they airlifted him out. He wasn’t too far out in our local backcountry, but the road he was on was fairly straight at that point and Jordan had been taking it easy, so his riding partner wasn’t sure what happened.
When I got to the hospital, he was intubated in the ICU with a broken pelvis (both sides), a broken femur, a broken collarbone, facial fractures, spinal fractures, a subarachnoid hemorrhage, and lastly… a mass near his brain stem.
He spent eight days intubated. Something like five surgeries (one a brain biopsy). Five weeks in the hospital (two of those weeks were inpatient rehab). Months of outpatient therapies.
The bike was totaled. He’d run it into the side of a cliff and taken the handlebars to the pelvis. We moved on with the assumption that he had a seizure while riding. He’d been having wild, debilitating headaches regularly for years, but doctors always identified some other suspected cause. He’d recently been having some strange right-side weakness, and big emotional outbursts that often ended in tears‚ but we’d attributed both to some variety of school stress. He’d just wrapped up all his transfer credits at the local community college and was hustling to get his bachelors as quickly as possible—neither of us was looking for a brain tumor.
A few months and a new oncologist later we had a diagnosis and a plan for a slow-growing clival chordoma. Resection. Proton radiation. Wait and see.
The resection was on December 23, 2013 and it took 13 hours. They went through his nose with tiny robotic instruments, picked away at the fibrous mass, and removed 70% of it one little piece at a time before sealing up his skull with a pad of fat from his belly. Jordan was supposed to be in the hospital for one week following the surgery, but he kept leaking spinal fluid into his nose and it ended up taking four re-packing surgeries and five weeks before he was back home.
He had to relearn to walk twice that year. And to talk.
Radiation started in the Spring. It was long enough for us to start to panic that we were losing the ground we’d gained on the tumor by removing so much of it. But Jordan had no health insurance, so we were stuck with Medi-Cal’s newly released ACA plans and the limited providers who took it.
It was eight weeks. Every weekday. In Loma Linda, a 2.5-hour drive away. They had just opened a new proton center here in San Diego two months before—but they didn’t take public insurance.
A series of friends and family members made those drives with Jordan, getting him to and fro every one of those appointments. I didn’t qualify for leave of any kind because we weren’t married, and I’d long ago used up my accrued vacation time. I spent most of Jordan’s recovery diligently working in my basement cubicle to keep us fed and housed, and then I’d come home and work on restaurant websites for extra cash.
Radiation concluded. Jordan went back to school that next September, only a year behind his original transfer date to SDSU. He got better in every way. Recovered gradually, slowly, painstakingly. His quarterly MRIs stayed stable. His annual MRIs stayed stable.
We gradually got back to life. Got Pinto, our third dog. Saw Mexico City. Actually got married. He got a job as an engineer. Bought motorcycles. Went to Guatemala. Rode to Canada. Bought a house. Rode to Mexico. Rode to New Mexico. Planted some trees. Built a shed. Built a bike. Took up BMX. Took up mountain biking.
In December 2021 the annual MRI showed a lesion in the brain stem. It’s okay, the oncologist said. Radiation scar tissue can still start to show up on scans this late in the game. It’s not unheard of. He took a round of steroids, but the lesion remained, unmoved. We watched it grow, our own worry growing until June 2022 when we tried an infusion treatment instead of a biopsy. Surely this would do it—once and for all we would see that it’s nothing to worry about. Scar tissue from radiations past. I started blogging his medical updates privately to share with friends and family.
In October they recommended the biopsy. Two weeks before surgery, he started having symptoms. Dizziness. His right eye stopped tracking. Right-side weakness.
The biopsy was easy. We were terrified it wouldn’t be, but brain surgery has come a long way in the last 10 years. It was fully robotic—one small needle, one small sample, one overnight stay.
Grade III Astrocytoma.
Likely cause: previous doses of radiation. Radiation giveth, radiation taketh away.
How do you treat a radiation-induced tumor? With more radiation.
For a while, every day Jordan got a little worse. The first week of December we went to New Orleans for a friend’s birthday. The week before Jordan had been walking the neighborhood daily, personal safety be damned. When we got back, he wouldn’t be able to return to those walks.
Radiation and chemo started at the same time, December 19. 42 nights of chemo pills. 33 weekdays of radiation treatments. Jordan had been using a walker in the house, but we started using a transfer chair (wheelchair without the big wheels) for his appointments.
He lost control over the right side of his face when the tumor ate Cranial Nerve IV. His right eye, gazing at nothing, was unable to close. His right ear, never good since the accident, was now completely deaf. The right side of his lips and throat were paralyzed.
They stitched his eye closed for now—to keep the cornea from getting scratched.
The left side started to have issues a few weeks into radiation. It’s not uncommon for radiation to cause new problems for brain tumor patients. There’s associated swelling in the tissues, tissues you desperately need to function when your brain stem is being invaded. Every day, a little worse.
His left eye drifts persistently to the center. He can’t focus it, it bounces and distorts his visual field. Reading is challenging. TV, impossible.
His left ear starts to go. Or maybe it doesn’t, but it seems like it’s always a little different. He can’t always distinguish sounds from one another. I can’t play music on the speakers anymore. I pulled up all the rugs for the walker in December; they remain up, even though he lost the ability to use it. The silence felt heavy and cold for months. Our 15 year old dog Bruiser’s pacing was quiet enough to converse over—sort of. Click click click slip click click click, thud.
By February, radiation and chemo ended, and we transitioned to an infusion treatment to reduce radiation swelling symptoms. Jordan was on high doses of steroids, making him miserable. Irritable, restless, hungry, bloated. Swelling his feet and neck. He lost coordination in his left arm and leg and had to transition to using the transfer chair full time.
After the first round of maintenance chemo (that’s what they call it when you have to take it for the rest of your life), he suffered a pulmonary embolism and spent five days in the hospital. I felt guilty for considering it a break.
His March maintenance chemo didn’t end in a hospitalization, but it took him three weeks to feel back where he was before he started taking the pills. Some loss of coordination in the left side is starting to seem connected to the medication—but with so much going on it’s hard to be certain.
And now it’s May. He works diligently every day at his physical therapy, occupational therapy, and speech therapy to try and regain something—anything he can. He walked 11 feet on the walker the other day (learning to walk for a 4th time), but it all feels like one step forward, two steps back.
His May oncology appointment showed what we feared—regrowth already. We’re switching to a new chemo this week, but it only has a 5-10% chance of extending his life. The terminal stage of his cancer is breathing down our necks, and there’s nothing we can do about it.
It’s agonizing to watch the love of my life confront his mortality in this way. There’s so much he’ll never do again, and so little time for him to not do it in.
I’ve been caregiving full time since November. I took some time off work in the first part of the year to care for him until he stabilized, but I’m back part time for now. I’m balancing the complete and total decay of the life I loved and the unending need to keep everything going, to keep him clean and comfortable, to keep our home and pets in a state of good repair.
My house always has other people in it. Paid caregivers, home health therapists, friends and family offering me respite and support. I desperately need the help, but I end up without the privacy I crave to meltdown and recover. I’m up to three mental health professionals. I gave up my side of the bed because the wheelchair didn’t fit on his. Nothing feels like it’s mine anymore— except the crippling responsibility and crushing grief.
I’m having a bad time. I’ve never been the most open person, and it’s been hard to try and let friends and family into my inner world. I wake up every day with an anxious nausea deep in my belly. The entire left side of my body feels perpetually clenched. It’s becoming clear that I need to start getting it out there. Letting my own experience be seen and heard as I try to do whatever it is I need to do to get through this moment intact.
I’ve been devouring books on mourning and grief. They tell me that I’m being taken down and rebuilt right now in core ways. They warn against fighting it, but they recommend taking on any impulse to express yourself creatively.
So… I’m hoping to blog more about it. To share what’s on my mind. To spread out this emotional weight—shout it into the void of my rarely-visited blog. Work through these heavy and uncomfortable topics in a more open way—my way. In writing. (No schedule though – did you read how busy I am? Yikes!)