Diagnosisiversary

On this day last year, I was right in the middle of one of the most chaotically surreal weeks of my life.

On Monday, the 7th, my nephew Gabriel was born. I was thrilled about his existence, of course, but I also remember that it felt incredibly weird being so far away -- I met my niece Isabella about 10 minutes after she was born, and I was standing right next to my sister when my niece Lourdes was born. Being 1600 miles away from the brand new squishy Gabriel-man felt so strange... like he couldn't possibly be real if I wasn't there to cuddle his face off moments after his birth.

The rest of that week, and to be honest the excitement of Gabe's birth, was overshadowed for me by MRI panic. Originally, I had an MRI scheduled for the following week, but after a particularly strange headache and, quite frankly, just mounting anxiety about having the MRI and getting the results, I called and rescheduled the scan for that Wednesday, March 9th. I remember making my way through that super busy day, with every damn minute crawling by. I was somewhat nervous about the scan itself, having never had an MRI before, but I was hand-and-knee-shaking-anxious about what the results would show. Given the thousands of dollars of tests I had had over the previous 5-6 years, and the consistently normal results that returned (with the exception of my heart), I tried to rationalize the small likelihood that this test would show anything. That said, I had been centering much of my health-related anxiety on this random, nonspecific idea of a "brain tumor" since my childhood and, more than anything else during the scan that evening, I remember lying there, forcing myself to take deep breaths, and just thinking, "Whatever it is, they can see it now. They have a picture of it, they'll figure out what it is, and we'll fix it." For as many times as I had been told that there was nothing major wrong with me, I knew that there was indeed something and, ultimately, I was confident that an MRI would confirm it.

When the scan was done, the tech came back into the room and asked, with some urgency, when my follow-up appointment was. I said I had been referred by my cardiologist and didn't have a follow-up scheduled at that point and she gave me a not-so-subtly-concerned smile and said, "You need to schedule one as soon as possible, okay?" Commence panic. And, just for the sake of a good story, also commence the continuation of the totally ridiculous day -- driving home from the hospital, on a sufficiently busy road in the middle of Salt Lake City that evening, two deer shot out from behind a truck, and ran directly in front of my car. Needless to say, I was done at that point.

The next day, March 10th, I was sitting in my psychopathology class in the afternoon and my phone rang, showing the number of my cardiologist's office. Since I was in class, I didn't answer, figuring I'd just give them a call back later when I was back in my office. Minutes after the phone call, I received a text message from my cardiologist's nurse practitioner (from her personal cell phone, no less) which asked me to call her ASAP and simply said that she wanted to "bring me in" the next morning. In an amazing display of avoidance, I sat through the remainder of my class that afternoon (~an hour or so) -- I have absolutely no idea what we covered in that hour, as I was sitting there thinking through every possible horrific scenario, but lord knows I would be desperate for answers yet also make it as miserable as humanly possible and wait it out, rather than just leaving the room and calling the NP back. (I am an enigma, that's for sure.)

Once our class ended, I hauled ass back to my office and called this woman back. I don't totally remember what the conversation was like, aside from her saying that my MRI did indeed come back showing an "abnormality," but that it wasn't clear, at this point, what that abnormality was. I remember her listing a few vague options, like a cyst or a hemangioma. I remember her telling me that I had an appointment the next morning at 10am -- she didn't ask if I was available then, didn't ask about anything scheduling-related at all, but instead just told me when and where I would be going. Of course, I didn't argue at all. I vividly remember asking her who I was seeing and feeling absolutely incredulous when she told me the doctor she had scheduled me with was a neurosurgeon.

The remainder of that evening was spent in the following ways: 1) walk down the hall to Emilie's office, have a breakdown; 2) have a visit from my advisor in Emilie's office, tell her the details, and make plans for a doctor-shaped pinata; 3) try to figure out how to keep myself distracted that night... verdict? Shoe shopping. I bought two freakishly cute pairs of flats that night, which I still lovingly refer to as my "tumor shoes." Each time I say that, Emilie gets pissed and says, "They're you're therapy shoes, goddammit!"; 4) second method of distraction: dessert with my cohort at the Dodo, an SLC favorite. I updated my Utah family on what I knew at that point, and then I laughed riotously at a lot of non-brain-related stories while consuming a whole lotta really amazing pie.

On Friday, March 11th, I picked up my lovely friend and cohort-mate, Diana, and we headed to the Clinical Neurosciences Center at the U of U Hospital. We were called back, met my neurosurgeon and his nurse, and he started going through my medical history and doing some neurological testing with me (following things with my eyes, looking at my gait, etc.). I remember him saying, mid-exam, "I'm not really sure what's in your brain. We'll get to that in a second." Emilie arrived right as we started looking at my MRI scans with him. On the image, he pointed out what, to me, looked like a ginormous "spot" (if only I knew what my last pre-surgery scan would look like!!!). His first inkling was that it was a hemangioblastoma. We talked about size and location and my options at that point. Throughout the entire conversation, I was sitting comfortably and supportively sandwiched between Emilie and Diana, who asked many of their own questions. I left the appointment with so much to consider and figure out.

I also left the appointment happy -- for YEARS, I had known that there was something physically wrong with me. I had been told repeatedly that, essentially, I was full of shit. Having an identified thing, TWO at that point, that potentially explained the vast majority of my symptoms...? It felt amazing. From the CNC, the three of us met up with Kelsey for lunch at Paradise and promptly bestowed upon the little fucker the name of Trent.

The rest of that week last year consisted of more appointments and another MRI, this time with an added MRA to check for and rule out an arterial abnormality. I went in for that scan that following Wednesday and received the all-clear the next day that confirmed that I did NOT have an arteriovenous malformation (um, score) and, because of that, that I was allowed to fly the next day and head back to Michigan to meet my 10 day old nephew.

So. One year ago today, the "real" adventure began. It is absolutely freaking ridiculous to think about everything that's happened in the past year. Given that for the first 8 months post-diagnosis, we were taking a wait and watch approach and had really never seriously discussed surgery, I definitely never thought that I would be safely on the other side of these shenanigans just one year later.

Tomorrow will be two months since my surgery. Aside from some minor headaches and some very minor and occasional balance issues (e.g., turning corners quickly, spinning my nephew around in circles which I learned, just this afternoon, I'm not quite ready for!), I'm doing amazingly well. I'm not nauseated every day anymore. My muscles don't ache for no reason. I'm not lightheaded as I sit through meetings. My incision has healed beautifully and I'm getting a total kick out of using my skull-hole as a great story at parties. I'm nearing the end of my one week visit to Michigan right now, my first time back since surgery, and for the past several days, I've been soaking in the glory of my two nieces and my nephew. I was even able to arrive midday on Gabriel's first birthday last Wednesday. Full circle is a pretty kickass thing, huh?