Not to brag, but I am now in the 1-3% of pancreatic cancer patients who have it go into their brain. I am so elite!
Is this the type of elite I would have chosen? Hell no. But here we are, and we’re dealing with it. At least we found out about it in a dramatic fashion and, for my birthday, I got to be pampered with room service.
I thought it was a migraine
It started as a typical chemo Monday. I was sitting in the infusion chair working on my laptop when I noticed a blindspot developing with a jagged, colorful aura around it. This is super similar to how I usually get migraines, so I didn’t think much of it.
Problem was, with a migraine, the aura usually grows and dissipates after a few hours. This one was a larger halo with a blinking spot in the middle. Should have been a clue that something was off, especially when my head felt a bit full and the aura and blindspot just weren’t going away.
After taking a nap and a friend stopping by for a short visit—I was behaving normally, so no clues that something was off—I texted my husband to ask where our ice pack was. He ended up calling me, and this is when shit got weird.
What we pieced together
I remember talking on the phone and asking my husband about the ice pack. Apparently, I started making “meep” sounds like Beaker from the Muppets. My husband said he started yelling my name to get me to respond, but I just kept meeping. So he hung up and called 911.
Next thing I know, I’m lying on the couch and someone is banging on the door. They announced it was the fire department, and I thought I had just fallen asleep and now the house was on fire. I managed to get to the door and asked what was going on. They told me my husband had called in a wellness check. That’s when I realized I was the problem, not the house, and that scared the shit out of me.
Somehow I managed to get the dog to the backyard and get back to the couch. When my husband called, I gave the phone to the paramedic, because I had no idea what was going on.
They told me we were going to the hospital, and I sorta remember getting my shoes on and telling them where my keys were so they could lock the front door.
Apparently I lost consciousness while they were at the house and again in the ambulance, which tracks, because to me we magically transported from the house to the ER.
Let the tests begin!
I wasn’t allowed to eat or drink anything while they figured out what all scans and tests needed to be done. That kinda sucked, but I was still a bit out of it and didn’t really care.
At some point not long after I arrived, my husband was able to join me and told me what had happened from his side of things. As scary as losing the time was for me, I know that had to be awful for him hearing me meeping and not knowing if I had just dropped dead or something.
After an EKG, two or three CT scans and an MRI overnight, they found the problem. I have three lesions in my brain, and the two larger ones had swelling around them. The theory is that the swelling caused me to have a seizure, hence the meeping and loss of consciousness.
The evening of my birthday, I was moved from the ER and admitted to a fancy private room on the advanced neurology floor. For the record, next year I’m going to just take leave on my birthday and not be all dramatic just to get some time off.
I’m so cool, I have a neurosurgeon on my team now!
Over the past five and a half years, I’ve been collecting doctors and medical professionals like Pokemon—surgical oncologist, medical oncologist, radiation oncologist, a second medical oncologist, a physician assistant, a few nurse navigators and nurse practitioners. Now I have a neurosurgeon on my team! And I like her based on the couple of times she stopped by in the hospital.
At one point, she made the comment that these brain lesions were just the cards we were dealt. I don’t know why exactly, but that made me really like her. Maybe because it was an acknowledgement that shit happens, but we’re going to deal with it. Basically sums up my pancreatic cancer journey.
Emotional train wreck
I feel like I was an emotional train wreck, especially in the hospital. This event and news were really difficult to process and deal with. I was just terrified of the idea of the cancer being in my brain. Who wouldn’t be?
And not thinking clearly (more on that in a moment) did not help. It was like a massive tidal wave of fear of having cancer in my brain, gratitude for all the support and care I have, frustration that chemo hadn’t stopped it, extreme joy that I’m still alive, exhaustion from dealing with this recurrence for two and a half years, and amazement that I managed to lose it while on the phone with my husband so he could call for help to get me to the hospital so we could find the stupid lesions.
It all felt complicated and overwhelming. Eventually, things became a bit more clear and I got back to a fighting mindset. But it was hard to get there. I still have moments when a wave of emotions hits and I just have to cry for a minute. Those moments are becoming less frequent, but they are still happening.
Getting my brain back in order
The rest of the hospital stay was pretty hazy, but I got to go home on the fifth day. During my stay, they started me on steroids to reduce the swelling in my brain and they put me on an anti-seizure med, levetiracetam (generic Keppra). The steroids amped me up while the levetiracetam made me groggy as all get out. It was pretty awful, to be honest.
The second worst part after emotions was trying to concentrate. Keep in mind that I have continued to work through all this. I want to pause here and say continuing to work is not the right choice for everyone, and anyone in this situation should do what is right for them. For me, working gives me a sense of normalcy and control. I also have a job that can be done sitting on my couch working on a laptop (which is all that I have the energy to do), and I have an amazing employer, management, and team. Seriously, I am beyond blessed in this crappy situation.
So trying to think was difficult for a couple of weeks. Three weeks out, and I finally felt like I can think again.
Zapping the Three Stooges
I started thinking of the three lesions in my brain as the Three Stooges. Makes them less intimidating. I also grew up watching the Three Stooges, so it makes me laugh. So Moe, Larry, and Curly got slapped something fierce, and I laughed about it. And the plan is to have none of the other stooges ever show up—I’m looking at you, Shemp, Joe, and Curly Joe. Back off.
We did stereotactic radiosurgery (SRS), which is basically a radiation equivalent of surgery. My radiation oncologist said there is a high success rate in stopping the growth of the cancer, and it could even go away. Of course, there are risks involved. But I have cancer in my brain, so what the hell.
The treatment itself was easier for me than the lung radiation, but the side effects were much stronger. I was nauseated for a bit right after treatments (mitigated this with ginger candies) and I was fatigued after each treatment. And the fatigue hit big time about a week later.
Let the scanxiety begin!
I have an MRI scheduled for 28 days after my last radiation treatment. That is now just over a week away, and the scanxiety is in full force. I’m hoping and praying the scan shows that the SRS worked, mainly to get rid of the cancer in my head. The other reason is that metastatic cancer to the brain or the central nervous system tends to be exclusion criteria for clinical trials. While there have been recent advancements and breakthroughs for pancreatic cancer, I’d still like to have the option to participate in a clinical trial if need be.
So, I’m doing my best to not let scanxiety freak me out, and instead continue enjoying and appreciating every minute of being alive.
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