One month (+ one day)

Yesterday was one month since my surgery and today was my first follow-up appointment with my neurosurgeon. For the first time in a long, long time I just walked away from a neuro appointment with absolutely nothing but good news...!

Basically, everything is perfect right now -- the cerebrospinal fluid leak from a couple weeks ago has fully resolved itself, I have almost completely full mobility back in my neck (still a bit of difficulty tipping my head back and some stiffness in the morning and at night, but otherwise back to normal), and improvements in energy and pain every day. Other than typical "recovering from major surgery" challenges, I have zero permanent side effects -- I'm walking perfectly fine, my fine motor skills are completely intact, my vision is normal, and so on. Needless to say, I've been pretty overwhelmed - especially over the last week or so - with where I am right now compared to where I thought I might be a month after surgery.

My surgeon (it deserves to be said again -- I LOVE this man) reiterated the kickassedness of my pathology report. The awesome unexpected part of this was that, because Trent was officially a hemangioblastoma, and because I don't have any symptoms of the genetic disorder sometimes associated with these tumors (Von-Hippel Lindau Syndrome), there's an extremely low - nearly absent - risk of this ever recurring. Initially it looked like I was going to have MRIs every 3 months for the next year.... now? I have a 6-month MRI in late July and, assuming all is clear, I'm done forever. Both of the "tumor options" that my neuro team was speculating about were pretty good, in the grand scheme of brain tumors and prognosis. The pilocytic astrocytoma, however, has a much greater chance of coming back and of causing other difficulties in general. When hemangioblastomas are sporadic (rather than being associated with VHL syndrome), successful surgery is essentially considered a full cure, not just a fix. At this point, my surgeon said that there's absolutely no reason to think that this will come back or ever be a problem in any way again. Pretty f-ing amazing.

To be entirely honest, the statement that I was likely on a "6 month MRI and then done forever" track was both the most wonderful thing ever and also a little bit sad -- I love this office, I love my surgeon, I love the nurses, I love the staff. I have been so consistently impressed with their genuine care and concern for me, their incredible professionalism, and their patience with all of my worries and needs for reassurance. I trust these folks so completely and that's a very, very new experience for me with regard to my relationship with medical professionals. I had a total clusterfuck of a morning and was running a bit late on my way to my appointment and ended up arriving pretty much right at 11:30 (versus the 15 minutes early they request). When I walked in, one of the nurse assistants came up and asked me who I was there to see, and the woman behind the desk called out my name and said something about how she and Melody (my surgeon's nurse) had just been talking about how weird it was that I wasn't there yet since I'm usually obnoxiously punctual. When I sat down to get checked in, she asked me how I was -- before I could even answer, she started talking about how awesome my surgeon was, how excited she was to find out that my surgery had gone so smoothly, and how she was just so happy to see me up and out and looking totally normal. We sat and chatted for a couple minutes about this whole crazy process and I was just so struck with how much detail she remembered about me and how clear it was that she was genuinely interested and invested in how I was. My appointment with my surgeon lasted about 25 minutes and involved a moment of full-on laughter from him, which I got a total kick out of (given the fact that he's typically stoic and serious... very nice all the time, but usually not "giggly" as it were). When his nurse Melody came in, she said something about how excited and cautiously optimistic she was that I was feeling good and all was going well, given that I hadn't called to ask her a question in nearly two weeks. :) It was just so, so nice to have such a lighthearted, calm, entirely drama-free appointment there.

After I left, I realized that I had completely forgotten to give Dr. Fults and Melody the thank you card I had for them, so I grabbed it out of my car and headed back inside, figuring I'd just give it to one of the women at the front desk to pass on to them. When I walked back in, Melody happened to be walking another patient back to the waiting room, so I just grabbed her and handed her the card. Just in the five seconds it took me to hand her the card and tell her I'm a nerd and totally forgot to give it to them, she grabbed my hand and said something about just being so glad to see me on the other side of this. I've been borderline tearful (in a good way!) all afternoon, just thinking about how lucky I am to be be where I am right now, doing as well as I am, and to have quite literally just "fallen" into the care of these remarkably skilled folks.

So that's the latest... everything is perfectly on track and I'm exactly where I should be (if not a little further than they anticipated) at this point in the recovery process. My headaches have still been pretty bad periodically, but my surgeon said that he would expect both that and a relatively low energy level for at least the next two months or so, as my body continues to heal. Apparently surgeries right at the back of your head like mine can often lead to blood getting into your spinal fluid, and that takes a while to resolve itself and can cause irritation in your head, neck, and back, so he said continued headaches weren't something to be concerned about at this point. I've officially been cleared of any and all restrictions, though he told me that with the explicit note that I was also still very much "in recovery" and thus needed to continue to take it easy and let myself work back up to my pre-surgery version of normalcy.

I was also surprised to find out that, while I most certainly have a "hole" in the back of my head where I have no skull, it's not entirely open like I originally thought it was -- he said that I actually have a thin piece of mesh plastic covering the area where the skull is gone that's held in place with a couple titanium screws. He said they typically don't do that for my type of surgery, but given that I have the additional complication of having the ASD closure device in my heart, they decided that it was better to have some sort of additional reinforcement on that area in my head. Apparently the covering is right on top of where my skull was, so it's underneath the muscle in my head (so I can't feel it or the screws at all). Between the ASD implant and that, it's kind of crazy to think how much "outside" material I have in my body at this point!

So all is well here. I'm still (still!) working on writing up some account of the actual surgery and hospital experience, but it's taking me way, way longer than I anticipated. One of these days. I'm also in the process of trying to get copies of my before and after surgery MRIs.... if I get those and can get the files to open on my computer, I'm hoping to be able to post an MRI with tumor and then one without. :) That's one of my goals for the week, so keep an eye out if you're like me and think that kind of thing is super f-ing awesome.