Trent FAQ

I feel like I'm not nearly cool enough to have a "FAQ," but I can't think of what else to call this and there have been a lot of similar questions recently. Here's the information I know so far about the tumor, the surgery process, and recovery expectations....


When is this production going down?
Thursday, January 12th is d-day (other alternatives: t-day, ts-day, fml-day, etc.). As in, like 3 days from now. Shit, son.

Explain Trent and The Situation, please?
The tumor (Trent) is a tiny solid mass that measures about 8mm. The cyst (The Situation) is the fluid-filled "bubble" (ew) that surrounds the tumor. These dudes have taken up residence in my left cerebellum. At this point, my surgeon thinks it's likely that the tumor is entirely encapsulated by the cyst which, if it's the case, would be super awesome for surgery (that basically means that the tumor would be totally inside the cyst, and minimally - if at all - attached to my brain tissue). Even if that ends up not being the case, the tumor is so itty bitty that that part of the surgery (removing the tumor itself) shouldn't be particularly dramatic. The tumor is very likely producing the fluid that's filling the cyst -- this is why the whole thing is coming out, rather than just draining the cyst (that, and the fact that once they drain the cyst, the surgery will be 2/3 of the way done anyway).

Okay, but what IS it?
Excellent question, and one for which there is no clear answer at this point. From the start, my neurosurgeon has been somewhat stumped by the type of tumor I have. At this point, they seemed to have narrowed it down to two options: either a hemangioblastoma or a pilocytic astrocytoma. Both are slow-growing, generally benign, and always fucking annoying.

Tumor = Cancer?
Not always, and very unlikely in my case. Originally my neurosurgeon said that my tumor was benign. Given the growth (slight for the tumor, not so slight for the cyst), he said that it can't really be called benign anymore, so now he's referring to it as "low grade." It's really unlikely that the tumor is cancerous, but we won't know for sure until it's out and we get a full pathology report. I'm not sure how long it will take to get that report, but hopefully not too terribly long. That said, the unknown aspect of this is yet another reason to get this thing out as soon as possible -- I'm very anxious to get a clear pathology report and know what's going on.

OMG Hair
Everyone always prefaces this question with something along the lines of, "Not to sound vain, but..." which I find hilarious since it was literally one of the first things I got upset about. Yes, there will indeed be head shaving that takes place, but at this point it looks like it's going to be minimal. It should just be a little strip at the bottom and in the back of my head -- my surgeon said that, given that my hair is shoulder-length, the rest of my hair should cover the gap without much of a problem. At this point, this has been conceptualized as the reverse of a mohawk, which we are now lovingly referring to as my impending "nohawk" (I think my brother gets credit for coming up with that one, but I don't totally remember...). There's a slight chance that I'll also have a small hairless spot at the top of my head if I end up having any swelling/pressure issues and they need to put in a pressure monitor. We're going to hope that's not going to be the case. All in all, the predicted hairlessness is significantly less distressing than I initially thought it might be. Sweet.

What will the surgery be like?
It will suck. I've been told it should last 4-6 hours. More specifically, because of the location of my tumor (the "upper back" -- like my medical terminology? -- of my cerebellum), they'll go in from the back of my head. My surgeon will be going straight through my cerebellum in order to access the tumor and the cyst, but the entire procedure will be done using a microscope (raise your hand if you love advancing technology). I'm not entirely sure what that will mean in terms of the process of gnawing through my skull, but as far as I understand, this shouldn't be a matter of fully taking out a significant portion of my skull in order to take out the tumor -- it might be that they can just drill a small hole and go in that way, rather than anything on a larger scale. Luckily, the tumor is very small, so they won't need a lot of space. I'm not sure about that though.

How long will you be in the hospital?
Freakishly enough, assuming all goes well, my surgeon is predicting a hospital stay of approximately three days. (I don't feel like they should be able to burrow into your brain and just let you go home after you've essentially just woken up from an exceptionally painful nap, but whatev.) They said that I should expect to be in the ICU the first night (specifically, neuro critical care), but then should be moved to a regular neuro room the next day. My surgeon's nurse made a point to note that (again, assuming everything goes well) you're in the hospital longer for a c-section than you are for this surgery.

What will the recovery be like?
This will also suck. I'm being told that the most difficult parts of recovery will be pain management and fatigue (pretty predictable). Because of the tumor location, they'll be going in through the back of my head -- this will mean moving aside the muscles in my neck (I think it's just moving them, not cutting them, but I'm not entirely sure their either). My surgeon said that that part will be, hands down, the most painful and generally uncomfortable part of the recovery. Along with that, they'll have to use enough anesthesia during the surgery that I was told it could take up to 2-3 weeks for it to get completely flushed out of my system. For that reason, I've been told to expect a lot of pretty intense fatigue, especially for the first week or two. My surgeon's nurse said that it will likely be the kind of thing that I'm actually feeling pretty good and so I decide I"m going to run to the store or something... and by time I have my coat and shoes on, I'll be absolutely exhausted again; or that I'll be able to sit up and watch half of a movie, and then will need to nap before watching the second half. That sort of thing.

In terms of long-term implications from the surgery, there are a myriad of potential complications -- some pretty common, some only vaguely possible. The tumor is in my cerebellum -- the cerebellum is primarily responsible for things related to motor control and muscle strength, specifically with the "fine-tuned" aspects of these functions (so, fine motor skills, coordination of movements, balance, posture, and so on). Given that they'll be going straight through my cerebellum to access the tumor, I'm being told to expect a minimum of a month of physical therapy after surgery. This should primarily be related to issues with balance and coordination. Those are issues that are pretty much guaranteed to some degree, but the extent could vary pretty significantly. Significantly less likely but still possible complications would be things like limb paralysis, double vision, and/or gross motor problems. Those could be temporary or permanent, if they happened. Specifically, my surgeon and his nurse mentioned the possibility that I would need to relearn how to walk or could end up with permanent double vision.... that would, of course, be classified as raging bullshit if that happened, but the likelihood is small, so we'll set those possibilities aside for now. (For the record, my best friend, always the silver lining finder, did note that if I had permanent double vision, I could use it to my advantage -- I could potentially see up for four computer screens at once, and thus could have access to so much data in a very short amount of time. Thus, I could be the first graduate student ever to finish my master's thesis and my dissertation at the same time.)

Other than that, my neurosurgeon isn't expecting any significant tissue damage at this point. I shouldn't have any issues with cognitive functioning, language, memory, or anything of that nature. That said, it's brain surgery, and everything is placed on a continuum of likelihood or lack thereof.

Are you scared?
Yes.

Will anyone be there to help out while you're recovering?
But of course. My dad and Cecilia (stepmom) will be arriving on Wednesday afternoon. Celia will stay for a week, my dad will stay for two weeks, and then about 4 hours after my dad leaves, my mom will arrive. She has an open-ended ticket and will stay for up to 2-3 weeks, depending on where I am in the recovery process. It's looking like one of my aunts will be coming for a few days as well while my mom is here. In addition to all that familial physical support (they'll be staying in my apartment with me for most, if not all, of the time they're here), I also have an insanely supportive group of friends in Salt Lake -- my cohort (5 other girls) as well as my other non-cohort graduate school friends, along with a smattering of a few non-school-related people (hard to come by in a doctoral program, but they exist). They've already made sure that I'm well aware of the epic love and support that's surrounding me throughout this process. I will admit to rolling my eyes a few times at the beginning of this whole surgery-planning process in November when a few (very well-intentioned!) folks suggested that I go back to Michigan where I "could be near the people who love you." While I certainly accept, appreciate, and am very aware of my support group in Michigan, rest assured that there is a freaky amount of love in Utah as well. Even on the days that I've struggled with accepting and understanding that fact, I have a group of ridiculously wonderful people who refuse to let a day go by without reminding me. Lucky is an understatement.

What about school?
One of the most complicated pieces of all these shenanigans. I'm currently a 2nd year student in a combined MS/PhD program (halfway done with the second of what will likely be a 6-7 year program). Much to my chagrin (but in my best interest, for sure), I'm formally on medical leave for the entire spring semester. When I first found out I had to have the surgery and had a vague idea of the recovery expectations, I entertained the idea of staying in Utah for our 3-week Christmas break, doing the surgery then, taking the first week or so of classes off, and then returning for the remainder of the semester. For as much of a neurotic, self-conscious, unsure-about-my-abilities thing as I am, that was a pretty damn bold idea. Ultimately, it just wasn't realistic. While it's likely that within 4-6 weeks I'll be fully functional again, taking medical leave just gives me a lot more room to pace myself and recover as well and as completely as I possibly can. I won't have the pressure of needing to be anywhere at a certain time if I'm having a bad day energy-wise, I won't be trying to juggle ten million different meetings and courses and the like. That said, I fully intend on using my leave as a productively as I can -- I'm in the process of working on my master's thesis right now and so writing my proposal (in full!) is my primary goal over the next handful of months. I can't do anything by way of formal milestones while I'm on leave, so as soon as I'm officially "back" (May), I'm hoping to jump right in and propose my thesis. Along with that, once I'm feeling up to it, I'm planning on being around campus for some meetings/symposiums, potentially sitting in on some classes, and that sort of thing. I adore my program, so the sooner I can get back, the better I'll feel.

I also am lucky enough to be in graduate school in one of the most ridiculously supportive departments ever, and they've worked it out so that I can be considered an employee of the department (rather than a student) and I'll be teaching a fully online undergraduate course this semester -- this means that I'll still be eligible to get my full stipend, so I'll be able to do really awesome things like pay my rent and my car insurance. Finances are still going to be incredibly, amazingly, ridiculously tight for the next 9 months or so -- being on medical leave means not being enrolled for any credits, and no credits means no student loans. That's a huge blow, for sure, but having my full stipend is indescribably amazing. I have absolutely no idea what I would be doing at this point without that (the likely scenario is that I probably would have had to fully move back to Michigan. Hells no.). The class I'm teaching is the same one that I taught last semester, so it's already fully prepared -- lectures ready, quizzes and exams ready, assignments ready. Basically all I'll be doing in that regard this semester is grading, and I've modified my syllabus enough so that it shouldn't be overwhelming. I love teaching, and as much as they piss me off sometimes, I'm really enjoying working with undergraduates, so I'm extremely happy that this has worked out and I'll still be able to be very much involved with one of my favorite pieces of graduate school so far.

What's the scariest part of this?
Short answer: that there's shit growing in my brain. Just the idea of that is so totally freaky.


Longer answer: it depends on the day. Now that we've officially entered Surgery Week, I'm pretty caught up on being terrified on anesthesia. I've never had it, so I have no clue how I'll react to it or what to expect from it (I had sedation for my heart procedure this summer). I also have a history of random-ass allergic reactions, so I'm totally freaked that something major like that will happen. My highly invasive nightly dreams have been focused on that lately -- yay!

Other than that, I'm scared of pretty predictable things: something going massively wrong, severe/debilitating/permanent complications, a not awesome pathology report, and so on.

That said, I am so goddamn excited to get this little fucker out of my head. I want this to be over. I'm anxious for Thursday night/Friday morning when we have a much better sense of where we are and what we're dealing with in terms of any complications. I just want to be in the next stage of all of this right now -- I've been sitting around, knowing about this tumor for nearly 10 months, knowing about the need for surgery for 6 weeks. I'm over thinking about it, I'm over talking about it, I'm over freaking out about it. I'm just very, very ready for this to be over, so I'm trying to focus on how soon it will be.

What the fuck?
Right?


Did I miss any questions??