Background and Diagnosis

I'm not sure how "common knowledge" my health drama over the past few years has been -- quite a few people who I've told about the tumor situation have nodded knowingly and seemed entirely unsurprised, while others have seemed totally shocked that I was dealing with anything medical at all. I'm going to attempt an abbreviated version of what's gotten me to the point of needing to start a freakin' blog.

It's kind of hard to pinpoint the true onset of symptoms, but the most obvious physical change that I can think of was in late 2005/early 2006. My symptoms have historically been pretty vague and nonspecific, which is why I never really got anywhere regarding a diagnosis or treatment until late 2010 -- things like muscle pain and weakness/shaking/twitching/fasciculations, bone/joint pain, heart palpitations and a generally high heart rate, feet and knees that turn a lovely shade of blue/purple when I'm standing or sitting for any moderate length of time, difficulty breathing (but never any wheezing), pretty much constant lightheadedness and occasional dizziness/vertigo, daily nausea, daily headaches of varying severity, and extreme fatigue (I'm serious about the "extreme"... this has been the most challenging symptom, hands down. A general sense of exhaustion/fatigue with the experience every few weeks or so of a full-bodied fatigue so incredible that it felt almost impossible to move my body or keep my eyes open).

Awesome, right? Physically, life has kind of sucked for the last handful of years. Given that I also have a history of depression and anxiety, convincing medical professionals to take me seriously has been challenging to say the least. Several have overtly dismissed me, stating that all of the above was "clearly" the result of a chemical imbalance (my personal favorite in this arena was the dude who attempted to tell me that my feet turned purple because I was "sad" -- apparently when my feet were elevated and thus not discolored, my mood was better than when I was sitting upright. Remember mood rings? Turns out I have mood feet. I win.). Despite my attempts to explain that I've dealt with depression and anxiety my entire life and thus know what my body feels like at varying levels of those two factors (and these symptoms were not that), I learned quickly that any mention of a history of psychological symptoms when trying to decipher unclear medical complaints often leads to an incredible sweeping generalization that you can either be anxious/depressed or have health problems. Not both. Given that I'm in graduate school studying clinical psychology, this has been maddening -- hey folks, let's fight stigma, but remember to never mention any psychological symptoms to your medical doctors. Not f-ing cool, obviously, but it's a hard line to make sense of when you're in the midst of medical difficulties. At first, these dismissive interactions with doctors just made me feel totally dejected and stupid. After a couple years of feeling immensely shitty, I just got pissed.

After the mood feet fiasco, I switched to a new doctor in a new practice, was actually listened to by said doctor for the first time ever, and we really started targeting a diagnosis. I was on heart monitors, had ultrasounds of the veins in my legs, had a ton of bloodwork to rule out autoimmune diseases, tried gluten-free diets, started new medications, and so on. The blood tests were always entirely normal, the heart monitors and EKGs showed tachycardia but nothing else, and other than that, nothing really came of all that effort (and money...). After several months of weekly tests and appointments with no meaningful results, we agreed that I should be vigilant about my symptoms and hope that, eventually, something would be obvious enough to warrant a diagnosis of some sort. The lack of clarity was frustrating, but it made a huge difference to feel like I had been listened to, taken seriously, and that someone else agreed that something was actually physically wrong with me and I wasn't being dramatic or making shit up.

I moved to Salt Lake City for graduate school in August of 2010 and ended my first semester of a hella (yeah, I say hella. Get used to it.) challenging program with my first ever ER visit. After being there for 7 hours, I got my first ever echocardiogram (lots of firsts!) and was told that I had a hole in my heart -- a congenital defect that I'd had all of my life. A LOT of drama ultimately stemmed from this diagnosis -- frustration with the cardiologist I was initially seeing, the insanely terrible (borderline traumatizing) experience of having a transesophageal echocardiogram a couple months later, debate as to whether I had a patent foramen ovale (PFO) or an atrial septal defect (ASD), and ultimately, whether or not I should have surgery to repair the hole. Despite being pretty dissatisfied with my first cardiologists office for a variety of reasons, I had a couple pretty damn serendipitous appointments with an incredible physician's assistant who, without an ounce of judgment, listened to what I was saying and ran more tests than were technically "necessary." It's somewhat common to have an MRI when you've been diagnosed with a hole in your heart -- MRIs can show if there's been any clotting and/or if there's been any ischemic (stroke) activity (having a hole in your heart puts you at increased risk of stroke since there's a direct pathway from from your heart to your brain and the blood that's spilling through that open wall of your heart hasn't been "cleaned" by your lungs, and thus might be more likely to contain clots). So it was reasonable for her to order an MRI, which she knew I wanted due to my other symptoms that were deemed to be unrelated to my heart. This PA has since disappeared from that doctor's office, but a little part of me will always adore her. (For the record, I ended up deciding to have the hole in my heart closed, switching cardiologists/hospitals at the last minute, and having the procedure in mid-July this year -- it was super easy, as the hole was patched with a Gore-Helex Septal Occluder which is a piece of wire and gortex that they put in a hollow catheter, thread through your leg into your heart -- I'm f-ing serious here -- and then close around the hole in the septum. Your own tissue grows over the device in a few months. Aside from EPIC bruising, both from the procedure and from the Plavix + aspirin combo I had to take for several months, it was super quick, super easy, and super not-at-all-dramatic. As of early December, I was told that my device was nearly entirely healed and that what turned out to be a quarter-sized ASD was essentially closed/cured. Yay. If you're as fascinated by the medical/technological shit as I am, go here: http://www.goremedical.com/helex/)

So... I had the MRI in early March -- the afternoon after the MRI (which I had had the evening before), I received a text from the PA during one of my classes asking me to call her ASAP. I somehow managed to sit through the remainder of my class and then bolted back down to my office to call her. She calmly, sweetly told me that "something" had come up on my MRI and she had taken the liberty of scheduling an appointment for me the next morning with a neurosurgeon. Holy fuck, right? The rest of that night consisted of shoe shopping with my best friend (I still refer to the purchases I made that night as my "tumor shoes," to which the BFF always cringes and responds with, "goddammit, they're therapy shoes!"), and dessert at one of the best cake/pie joints in Salt Lake with my entire wonderful, amazing, freakishly supportive cohort. At the appointment the following morning, I was told again that there was "something" in my brain -- specifically, embedded in the left side of my cerebellum. I was told that it was a tiny solid mass surrounded by a slightly larger cyst. It was (and still is) unclear exactly what kind of tumor it was, but at that point, I was told that it was very likely benign and didn't need to be removed immediately. I was told that it was a possibility that it could just stay right where it was for the rest of my life, if I was willing to manage the symptoms it was causing.

To be entirely honest, I was downright happy after that appointment. Of all the possible options for bad news from a neurosurgeon, it felt like the best possible thing I could hear. Likewise, I had a diagnosis. Finally. There was finally a tangible, obvious, clear something that had the potential to explain a lot of my symptoms. Given the grandness of the discovery, my cohort and I decided that tumor needed a name. Soon after the appointment, the little motherfucker (another affectionate nickname) was dubbed "Trent."

I had another MRI in May of 2011 during a 24-hour ER stay/observation following a bout of dizziness that didn't show any major changes. After a change/worsening in headaches in October, I had an appointment with my neurosurgeon who (as I had expected and, frankly, agreed with) thought that the change in headaches was likely due to a medication I was on (Plavix). We agreed to do another MRI in late November, which was 6 months since my last scan. I had that MRI which was followed by an appointment with the neurosurgeon a couple hours later -- it was then that I was told that, while the tumor was about the same size (about 1mm growth), the cyst had grown significantly and was now about the size of a golfball. Because of the size and the location, surgery is the only option and needs to happen asap. Ultimately, the cyst is more of the immediate issue and so it was decided that we (my cohort and I; my neurosurgeon wasn't included in this discussion) couldn't blame this all on Trent anymore... cyst needed a name, too. After much discussion, the cyst has been dubbed "The Situation." That's what's up.

Aaand here we are. The need for surgery was a complete and total shock for me. I went into that MRI and follow-up appointment in November feeling entirely confident that my heart was almost entirely healed and I was about to be told that the tumor was stable, and thus that I was going to have a slight medical reprieve for awhile. Alas, not so. The past 6 weeks have been full of incredible mood swings, uncertainty, fear, confidence, grace, and a whole lotta questions. At this point, I'm ready to have this little fucker OUT of my head and I'm incredibly excited to see what I feel like after these two major anomalies are repaired.

Told you I was verbose. (And for the record, this IS the abbreviated version.)