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 (only 2-inches by 1-inch) and it’s in my right-side temporal lobe. That’s good, because I’m right-handed. If I were left-handed, this would be not-so-good because the right-side temporal lobe would be the side that controls my speech. But as it is, this is in a largely “dark” part of my brain. That means they can take out a portion of my brain with the tumor and there shouldn’t be any adverse effects.
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 think again, I could smile again, and all my bits and pieces were back to normal. That lasted a couple of days, until the seizures returned on Monday. What the hell?!?! There’s no sinus infection — why do I still have seizures?
After discussing with my neurologist, she ordered an MRI of my brain. I’ve had a couple of MRIs before and they each were deemed “unremarkable”. I was expecting another non-finding. 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. There’s clearly something there, in the right temporal lobe, pressing against the spinal cord.
After a referral to an oncologist and then on to a brain surgeon, 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 lucky?
Cue the Craniotomy
Surgery Date: May 3, 2016
Brain surgery lasted about five and a half hours and was largely successful. 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 whether chemotherapy is necessary to follow up the surgery and forthcoming 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 may need chemotherapy too. Radiation starts in a couple of weeks.
Wish me luck…
Jeeeeez my head hurts… Post-craniotomy surgery staples are not comfortable. Particularly so when they attach your upper ear to your temple, or when they line the ridge between your parted hair. I feel like a Klingon, but less joyful.
“Everything happens for a reason”
These are words you don’t want to say to someone with cancer. When I hear “everything happens for a reason”, my mind translates that into “Greg, if you weren’t such a bad person, you woudn’t have cancer now.” A suitable alternative expression of sympathy would be “Greg, I’m so sorry, cancer freaking sucks! I know you’ll get through this.”
Staples are now gone! Surgeon 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, 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 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 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.
Oh, for crying out loud!
My oncologist’s nurse met me at the radiation clinic this morning. She wanted to tell me in person that Dr. Conrad had suddenly died yesterday. What a freaking disaster! I feel so sorry for his family, staff, and naturally his patients (myself included). He was a wonderful man, a great oncologist, and he will be sorely missed.
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 Approaching
I’m nearing the end of my radiation treatment. A few weeks afterwards, I’ll get another MRI to see how we’re progressing with the cancer-killing mission. The waiting for signs of progress is definitely tough, but totally doable. Happily, I now know the daily radiation therapy is definitely not a placebo. My hair is gone on the lower right side and along the back. So radiation is definitely doing something. If it’s doing this to my hair, it has to be doing something nasty to that tumor.
I’ve sent off a blood sample for a panel of genetics tests. 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.