The first part of my treatment was six weeks of radiation. First, I was fitted for a mask, the job of which was to hold my head in precise position each time I received treatment. To create this mask, the technicians heated a piece of mesh plastic and then used an x-ray and lasers as guides as they pulled it to form over my face. It then cooled into a rigid shape suitable for keeping me in place, like so:

Once I had the mask fitted, it was time to begin treatment. Starting in the beginning of October, I went to Huntsman Cancer Institute (on the campus of the University of Utah Hospital) every weekday morning for six weeks. Usually things went pretty fast, only having to wait for a short time before going back to the radiation vault, but sometimes there were longer waits of an hour or more. Once I got in, it was fast: usually five minutes. Going so often was interesting, because I saw the techs every day, but it was for such short amounts of time. They were good at getting to know me and making me feel comfortable in spite of such brief encounters. They also put up with my daily music request of either Josh Ritter or Jason Isbell. I really liked my team there. During this time, I happened to read an account of a woman who went through radiation and chemo, and her experience sounded terrible; very different from mine. I attribute a lot of that to the great radiation techs at Huntsman.

Here’s a pic of the radiation machine, for some context:

The big part that’s above my head in the picture rotated around in order to be positioned behind and to the side of my head at the proper angle.

The side effects from radiation weren’t too bad for me. One side effect, hair loss at the site of the radiation, was merely annoying. It also caused my skin to itch, but only a bit. As treatment went on, though, I started to really feel depleted of energy. By the time I’d get home from work I’d be completely wiped out. I wasn’t a lot of good around the house during that time. That started during the last two weeks or so of treatment and lasted another few weeks after that.

Some other memories from this time:

• Despite how boring I’m sure it was, Laura was extremely faithful about taking me to my appointments. I never felt alone.
• My good friend Allen Gilbert (whose brother gave this blog its name) came to visit and help me with Louise during a few days when Laura had to be out of town, which was great. Of course, Louise only started to warm up to him at the very end, but that’s just her way 😂. I’ll close out with a poor quality but cute video of the two of them.

EDIT: I forgot to thank some other folks! Laura’s parents, Joel and Julie, were also so giving during this period. They came to the house most mornings before 7:00 so that we could go to my appointments without having to bring Louise along. Thank you guys; love you.

I’ve had quite a few people asking lately how I’m doing health-wise, so Laura suggested I write a post about it.

Quick recap: in the fall of 2015 I had a seizure that led to the discovery of a malignant brain tumor (oligodendroglioma). I had most of it surgically removed, and at the time my doctors decided that chemo and radiation were options best left for later.

Well, “later” came at the end of this past summer (2019). I had begun noticing some worsening coordination and cognition, so I moved up my biannual MRI by a few weeks. Sure enough, the results showed that, while slowly, the tumor was definitely regrowing.

This was difficult news. Despite living with the reality of brain cancer for four years, we had been going about life. We had a daughter who’d just turned one. As we drove away from the hospital, all I could think about was going to hug her at daycare, so we did.

Slowly, though, things started looking better. We realized that not much had actually changed; right after surgery we’d been told that patients with this type of cancer could expect to live, on average, 10 years. This news wasn’t actually adjusting that estimate downward or anything. It simply meant that I’d have to undergo further treatment now.

So, that’s what I’ve been doing for the past several months: first I did radiation, then chemotherapy (which is still ongoing). I’ll post more specifics on that soon.

Laura and I have felt so much love from you all in the past few weeks. I want to thank everyone again for your support.

Surgery day was October 26th. As you may have read in Laura’s updates, it went quite well. The vast majority of the tumor was removed. However, there are some complications.

One of the first things I noticed the morning after surgery was that sensation in my right leg was significantly less than in my left. This makes walking a challenge. I also discovered that I have a harder time using my right hand. Both of these issues have improved significantly in the last week, but I still feel a long ways off of normal. Hopefully, this will continue to improve through therapy.

We met with the neurooncologist yesterday to discuss my prognosis. She confirmed that the tumor is cancerous, but slow-growing. While they were able to remove much of it, they couldn’t safely get it all. For now, she recommended monitoring it with an MRI every few months. In the coming years, chemotherapy may be necessary, but it is very hard to know much at this point.

Thank you so much for all of your support. These days texting and typing is extremely difficult and time consuming for me, so I appreciate everyone’s patience in that regard. I do love hearing from you even though I’m unlikely to respond.

I’ll (with a great deal of Laura’s help) post more updates here in the coming weeks as I have time and energy. Thanks everyone!

Laura is planning to update this page with surgery progress throughout the day, for anyone who’s interested. Hopefully this will make keeping folks updated easier on her.

First of all, thanks are in order. We have been overwhelmed by the outpouring of love, support, and generosity from our friends and family over the past two weeks. It means so much to both of us–thank you!

For anyone who’s curious, I thought I’d write up a summary of what’s been going on, and what we know at this time.

Timeline thus far

Sunday October 11th

I woke up feeling a bit dizzy, with numbness in my right leg. It went away after about a minute, but then it happened three more times that morning, so Laura and I decided to go to urgent care.

The nearest urgent care center was at a hospital (in Bridgton, Maine), but the urgent care center itself was closed. They did have an emergency room that was open, but at that point in time it didn’t feel like an emergency, so we left to go to the next nearest urgent care. On the way, the numbness returned, but this time accompanied by visible twitching in my leg and abdomen. At this point, Laura said, “We’re going back to the hospital,” and turned the car around. Seconds later, I began having a seizure.

[begin long period of hazy forgetfulness for Jordan]

Laura pulled over, called an ambulance, and they arrived and brought me back to the Bridgton hospital where we had just been a few minutes prior.

Shortly after we arrived, I had a second seizure. They performed a CT scan and found a mass in my brain. We were told we’d need to go to another hospital (with a neurologist): either in Lewiston, ME, Portland, ME, or Massachusetts General in Boston.

Laura chose Boston, and an ambulance took me there. Upon arrival I got an MRI, and they confirmed the mass was likely a cancerous tumor.

Monday October 12th

The next day we met the neurosurgeon and neurooncologist.

[Jordan starts to come out of haze]

My neurosurgeon showed us a print out of my tumor in the left parietal lobe. We learned we’d be doing surgery to remove it, and that I would be conscious during the procedure.

Tuesday October 13th

I underwent a functional MRI, which is pretty much a regular MRI that they do while you’re performing various tasks. The fMRI captures images of increased blood flow to different brain areas, and those areas are then correlated with the tasks performed. This is done to assist in planning the surgery.

That evening I was released from the hospital.

Wednesday October 14th through October 22nd

Recuperating, regaining my memory, and just hanging out in the Boston area (thanks to Aaron & Elissa for your hospitality last week!). Received much-appreciated visits from friends and family.

Friday October 23rd (today)

Had a pre-op meeting with the neurosurgeon where we learned about what to expect in surgery.

What’s next

There’s a lot of uncertainty at this point. I go into surgery on Monday the 26th, which should take most of the day. The goal is to remove as much tumor as possible while avoiding damaging brain function. In order to accomplish that, I’ll be awake and the surgeon will be electrically stimulating tumor areas he wants to remove, to make sure that when he does I can still do things like talk, move my foot, do math, et cetera. If all goes well, I could be out of the hospital as soon as two days later, but that’s entirely dependent on how well surgery goes.

Then it will be another two weeks before we receive a diagnosis regarding the type of tumor, at which point we’ll find out more about next steps for treatment.