There’s really no way to sugar-coat this … Well, I’m sure there’s a way, but that’s not how this is going to work:
I have brain cancer.
But from everything we know, it’s going to be ok. The tumor isn’t huge (somewhere around 32 mm x 49 mm x ?? mm) and it’s in my right-side temporal lobe. That’s good, because I’m right-handed. If I were left-handed, I’d be a bit screwed because the right-side temporal lobe would be the portion of my brain that controls my speech and short-term memory. Generally I like both of those functions a lot. But as it is for me, this is in a largely “dark” part of my brain. No, it doesn’t mean that’s where my evil-self lives. “Dark” means they can dig into this portion of my brain to extract the tumor and there shouldn’t be any adverse effects. (Limited risk of collateral damage)
The story so far
I’ve had a chronic migraine for years and have undergone various treatments with varying degrees of success (or failure) – Topomax, Maxalt, Botox, Fiorocet, Hydromorphon, Zonogram, and my favorite — lower-occipital nerve block injections.
Since we moved back to Austin from Dallas, the migraine has steadily grown more persistent. My psychiatrist recommended a local neurologist and I’ve been under her care since early April (2016). Coincidentally, I nursed a nasty sinus infection through the end of March into early April. That’s also when the seizures began.
The first seizure happened on the evening of April 3. But it took a couple of days before I really knew what was happening. At first I thought I’d just passed out — there was this light-headed feeling in my head, and this sense that my brain was just put into ‘pause’. It passed after a few seconds and I began to sweat, a lot. I knew something wasn’t right, but I was afraid to mention it to Lorin. I thought maybe I was just tired from being sick with sinus issues and a weekend of traveling.
The next day I worked from home — and had two or three “episodes” (seizures), each one was accompanied by a strong acutely familiar smell of Play-Doh or plastic toys. It was really frustrating, as I couldn’t remember from where I knew that smell. Doubly frustrating, as I knew these weren’t real smells around me.
On Tuesday, April 5th, the combination of pain from the migraine and sinus pressure was unbearable. I met my neurologist for the first time and we discussed a plan for treating the migraine. First off, I had to eliminate caffeine (and alcohol) from my diet, and take Zonagram at least for a few weeks to see if it helps prevent migraines. I unfortunately neglected to mention the episodes from the previous two days. I saw a clinician for the sinus infection and received antibiotics and steroids.
Later that evening I finally described the symptoms of these episodes to Lorin, again noting that “I think I’m passing out”. But Lorin knew immediately, “no, I think you’re having seizures! That smell is an olfactory hallucination!” Turns out, she was absolutely correct.
By Saturday the 9th, I’d had 30-40 small seizures, each lasting a few seconds but by then the Zonagram kicked in and I suffered no more seizures from the 10th through the 25th. During that time, we all believed that the seizures were related to added pressure from the sinus infection, and with the sinus infection cleared, no more seizures. In the mean time, Zonogram was kicking my ass. The side effects were unbearable and I was still seeing no relief from the ever-present migraine. On Friday, the 22nd of April I was given permission to cease the Zonagram and Prednizone. I was feeling so much better within 24 hours, it was like a cloud was lifted out of my head — I could actually think again, I could smile again, and all my bits and pieces were back to normal. That elation lasted a couple of days, until the seizures returned on Monday. What the hell?!?! There’s no sinus infection, so … why do I still have seizures?
Enter The Tumor
After discussing with my neurologist, she ordered an MRI of my brain. I’ve had a sizable number of MRIs over the past few years for my chronic migraine, and they each were deemed “unremarkable”. I was certainly expecting yet another great big non-finding. But instead, I got a call within a couple of hours of the scan, “There’s a spot that’s concerning. Let’s bring you in for another MRI in the morning, this time with contrast.” The next day, with the contrast injected and a fresh MRI completed, Lorin and I headed to the neurologists office. The images we saw clearly showed there’s something there, in the right temporal lobe, and it is pressing against the spinal cord.
I was referred to a fantastic oncologist, Charles Conrad and then on to a rockstar brain surgeon, James Waldron. Obviously, we now know it’s a tumor, but it’s in a good, fairly low-risk spot. It could be a lot worse. I guess I’m super lucky, right?
Cue the Craniotomy
Surgery Date: May 3, 2016
Brain surgery lasted about five and a half hours and was largely successful in that I did not die and they dug out most of the tumor. Ninety percent of the tumor was removed and is now being genetically tested at the pathology lab. When we get the results, we’ll know what chemotherapy to use against it. In the mean time, I follow up the surgery with some targeted radiation.
Astrocytoma: Grade 3
A grade 3 Astrocytoma means that even though brain surgery was successful in removing 90% of the tumor, the remaining 10% is still a recurrence threat. Therefore, I’ll need to undergo 6 weeks of daily radiation treatment. Pending the outcome of that and genetic tests, I’m pretty sure I’ll need chemotherapy too but what type is unclear. Radiation starts in a couple of weeks. But I’m ready to get this show on the road now! There’s some invader inside my brain and I’m not willing to just sit on my ass while the calendar rolls around to the first radiation day.
Wish me luck…
Oh shit fire, my head really hurts… Post-craniotomy surgery staples are not comfortable. Particularly so when they have to attach your upper ear to your temple, or when the staples line the ridge between your parted hair from the edge of your forehead to the back of your head. I feel like a Klingon, but a hell of a lot less joyful.
“Everything happens for a reason”
These are words you don’t ever want to say to someone with cancer. Seriously, unless you want to see someone get pissed off and throw some shit. When I hear “everything happens for a reason”, my mind translates that into “Greg, if you weren’t such a bad person, you wouldn’t have cancer now.” A suitable alternative expression of sympathy would be “Greg, I’m so sorry, cancer fucking sucks! I know you’ll get through this.”
Finally, the dreadful staples are now gone! The surgeon, Dr. Waldron, removed them easily. Swelling around the incision is still noticeable, but that will go down. I’ve been fitted for a custom radiation therapy mask and I’m set to start next week.
Since the surgery, I’ve experienced zero seizures. That’s fantastic. On the flip side, I’m thinking that my chronic migraine is still alive and kicking. If so, that would suggest the chronic migraine is unrelated to the tumor, and that seems plausible given that it was relieved with a nerve block injection to my lower occipital nerves in the back of my neck. It sure as hell would’ve been great if we could get three birds (cancer, seizures, migraine) with one stone (surgery) but at least there’s a treatment for the migraine that worked in the past. Maybe the nerve block will work again.
After surgery, for the next couple of weeks I was experiencing a strong sense of cognitive dissonance. But in the past couple of weeks, that’s largely eliminated now. My mind is clearer, my attitude is mostly improved, and in general I’m very optimistic about the course of treatment for the remnants of the astrocytoma.
Belay that positivity — Oh, for crying out loud!
My oncologist’s nurse met me inside the radiation clinic this morning. She wanted to tell me, in person, that Dr. Conrad had suddenly died yesterday, apparently due to injuries from an accident at his home. Dammit! What a fucking disaster! I feel so deeply sorry for his family, his staff at Texas Oncology and, of course, I feel terrible for his patients (yes, selfishly I’m quite sorry for myself). He was a wonderful man, a great oncologist, and he will be sorely missed. What does this mean for my ongoing treatment plan?
A Litany Against Fear (from Dune):
“I must not fear. Fear is the mind killer. Fear is the little death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
End of Rads is Approaching
I’m nearing the end of my radiation treatment. Near the end of July, I’ll get another anxiously awaited MRI to see how we’re progressing with the cancer-killing mission. This seemingly endless waiting for signs of progress is definitely tough, but totally doable. Hell, I’ve been waiting for years to go back to Apple’s yearly WWDC conference again. A few weeks is nothing. Happily, I now know the daily radiation therapy is definitely not a placebo. My hair is really dropping out on the right side and the back side my head. So, definitively, radiation is definitely doing something. If it’s doing this to my hair, then it has to be doing something totally nasty to that goddamned tumor inside my head guts.
I’ve sent off a blood sample for a larger panel of genetics tests than the Foundation One test of the tumor tissue biopsy. I want get screened for genetic mutations that are predispositioned towards breast cancer and colon cancer especially. Hopefully, those come back negative and we won’t need to worry about running similar tests on the kids, at least until they are older. Otherwise, we’ll need to see if they inherited the gene mutations and if so, have them screened yearly for nodules, polyps, and cancers. It’s far better to catch it and treat it early than to discover it after its metastasized and symptomatic.
Take a gander in my colon?
The colonoscopy and endoscopy are now behind me. (What, you think that’s punny?) Well, now we know I’ve got definitely got FAP (or familial adenomatous polyps). That is some mighty shitty news. (Still punny, smart-ass?) Non-cancerous desmoids were “carpeting” my stomach, but there were a fair number of polyps inside the colon. They’ve biopsied and zapped those in the colon, but chances are I’ll have to have my colon removed if I want to avoid seeing those reoccur with a vengeance down the road.