On August 2, 2012, I was working in operations for a local food delivery service. It was a hot August morning, ordinary. I walked the dog, ran errands. As the day progressed, I increasingly felt unwell, but I wasn’t exactly sick so I went to work per usual at 2 to go to a pickup site. I loaded my truck, drove to Midlothian, and started to set up shop. I only put out the step and opened the awning – I didn’t have the energy to setup everything else. Plus a big storm was rolling in, and everything would’ve gotten wet. I read my book but couldn’t concentrate because of this terrible feeling, more like terror than anything else.
A customer came at 3:30 pm, I gave her a big smile, bagged her groceries, and told her about my inexplicable fear of lightning. As she drove away, I climbed into the cab, certain that I was going to be struck by lightning if I stayed outside. Next, I heard someone shout from outside, “Are you alright?” I must have lost consciousness. I reached my hand up to open the door but it started moving uncontrollably.
I thought “I’m having a seizure, why am I having a seizure?” Then I blacked out.
I want to be clear that up until that moment I considered myself to be a healthy 28 year old. I had a few unremarkable bad habits and odd personality traits, but in the realm of normal. I had never had a seizure, but I knew that I was having one then and I was terrified!
The next part of the story is probably best told by someone else. Customers started calling customer service saying that no one was at the pickup site, or that someone was sleeping in the truck. That’s when two of my co-workers drove to Midlothian to see what was happening. One called 911, because he knew that I wouldn’t be sleeping through customers picking up.
By the time my co-workers arrived, the paramedics were already there. Apparently I had fallen out of the cab of the truck (we will never know how) and was having grand mal seizures on the pavement when they arrived. One of my co-workers drove the truck back and he has NEVER complained even though I’m pretty sure I seized out some pretty nasty bodily waste. I think another co-worker ended up cleaning it. What gems those men are!
I had probably been alone, seizing, for an hour and a half before I got medical attention.
The doctors didn’t know what to do – they thought I might have been assaulted (I was bruised and bloody and in a parking lot and head injuries do cause seizures) or that it was a drug overdose (quickly dismissed due to my immaculate tox screen). I was still seizing so hard that they couldn’t get a CT scan, so they induced a coma to still my body enough to get a picture of what was happening.
The next day, I was stable enough to get an MRI, and sure enough I had a great big tumor sitting in my right frontal lobe. I woke up out of my coma later that evening in what I can only describe as a Wizard of Oz-esque experience. The nurses asked if it was normal for me to have a heart rate of 33 bpm (ummm no that’s not normal for anyone but Lance Armstrong, aren’t you guys nurses?). My boyfriend and family asked about specific memories. Then they told me I have a brain tumor. Whatever drugs they give you at the hospital are awesome, and my response was unfazed – something like “oh, so that’s what’s going on,” and I went back to sleep. I remember talking to my neurosurgeon about the tumor – he couldn’t be sure what kind it was or if it were malignant or benign, but it was close enough to my skull that it was operable.
When I woke up from surgery I was immediately aware that something was terribly wrong …
… with my left arm. You know that feeling you get in the middle of the night when you sleep on your arm weird and it tingles and hurts and is numb and you think it’s paralyzed but it is just “asleep?” It felt just like that, except I really couldn’t feel anything that touched it and I couldn’t move it. At all. The doctor was surprised that my left arm was paralyzed. He was not surprised that there was paralysis (apparently that happens fairly often with brain surgery??!), but he thought it would have been my face or my leg. Because of the paralysis, I was granted a weeklong stay in the hospital’s rehab unit.
Rehab is a strange place. Superficially, it seems awful. Obese double amputees trying to learn how to get in and out of the shower, people recovering from strokes trying to remember words. But it was a great place to be – everyone was elated because they were on their way home, like me, out of the ICU. I was not there to try to “find” my arm again. I was there to learn how to live without a working arm.
My tumor was about 3.5×4.5 cm.
That is huge when it comes to brain tumors, because your brain literally has no place to go to make room for tumors. Because the tumor was in my right frontal lobe, my neurosurgeon (and a bazillion other doctors I’ve seen) speculate that it might have affected my coordination, anxiety, depression, impulsivity, or decision-making. This realization started a short-lived bout of questioning about which bad decisions I had made were because of a tumor and which were normal bad decisions. I decided that this was an unhealthy way to live (and something I could never verify anyway) so I have stopped. (Though it is tempting to blame some things on the tumor).
Leaving the hospital felt great – colors were never so bright, sounds so clear, smells so intense. What was initially great wound up feeling a little like a six-month acid trip. I was filled with wonder, but easily overwhelmed. It felt like they took a filter out of my brain so that every sensation was weighted equally. If I was cold, and could hear music, and someone started talking, I would start to have a panic attack.
During my initial weeks out of the hospital, the waiting began. Slices of my tumor had been sent to a lab to be studied, and we wrung our hands (my hand) waiting for a diagnosis.
A doctor from UVA called in September to tell me that I have Oligodendroglioma, a rare tumor.
It is Stage 2, meaning that only a few cells out of every hundred were dividing when the slice was captured. This is great news for me (even though the tumor is malignant) because it means that it is not (at this time) very aggressive.
The tumor is a primary tumor, meaning that it started in my brain, and didn’t spawn from some other cancer somewhere else in my body. One of the neat things about primary brain tumors is that the cancer can’t spread to my lungs or stomach or bladder or skin, because of the blood-brain barrier. The doctors all had different opinions on how and when to treat. I decided to follow the advice of Dr. Holdhoff at Johns Hopkins and wait on chemo until we get an idea of how the tumor is growing. I have gotten maybe five MRIs since then, and my brain seems stable, and I can’t be happier that I still have the chemo to fall back on.
My arm is leaps and bounds better – I have regained most of my sensation, and am figuring out how to move it again. I could write a book on what it was like the first time my pinky twitched and how easily exhausted you can become trying to shrug your shoulder and how weird it is to consciously try to swing your arm when you walk. My regained function is imperfect, and my left arm will probably always be a little weaker and less coordinated than my right. I can now open a jar of peanut butter and tie shoelaces though!
My life now is still full of medication, forms, doctors, disability, and exercise for my arm.
A lot of my anxiety has diminished, but it is still there, along with a heavy tiredness. I have learned that I can’t have expectations for the day, which is difficult in our society. I might have walked to the library yesterday, but can’t make it to the end of the block without feeling dizzy and exhausted today. I have loose goals for the week, and I do everything I can when I feel good, and I allow myself to watch Gene Wilder and Richard Pryor movies when I’m too tired to do anything “productive.” (I happen to think that down time is very productive for healing brains).
I am not in remission, and despite the hole in my brain and the apparent stability in the MRIs, I will never be deemed “cancer free.” In fact, the doctors talk about the tumor in the present tense, and will continue to do so even after I treat the thing with chemo.
Today, I feel guilty for feeling so great, when I feel like this has been so traumatic for everyone I know, and I don’t want it to be scary to others – really, I’m ok!
If you guys have questions about me, my tumor, my medications, my reading material, free resources for cancer patients, doctors, MRIs, acupuncture, chemo, brains (BRAINS ARE AMAZING), talk therapy, occupational therapy, second opinions, whatever, comment below and I will respond as soon as possible!
If anyone can gain anything from this, I’d truly be delighted.
Also, thank you!