Trial and Error

Well it's been another interesting week here in the Recovery Zone. Last week I did have an "epiphany" of sorts: I'm getting a second round of firsts. Every single thing I have taken for granted can now reshape itself into an exciting "first" after my surgery... I'm not sure if that even makes sense honestly. For example, I walked to this nature trail about a mile and a half away from my house, for the first time since my surgery; everything that I do now feels just a little different now... better in a way. I truly can't describe it. My energy levels have increased which means I've been a little antsy... which means I've been moving a lot more. So this past week has consisted of me trying different things and seeing what I can and can't do. There's still no word on pathology... how? Why? I also finally have some insight into my work schedule for the rest of the semester which means I'm making plans for the future!!! Bout time.

And here we are...week 6 and there are some definite changes taking place. As I stated, my energy levels are way, way up. Nowhere near my "normal" but I'm finding myself to be less fatigued than I have been. Naps are not a part of most of my days anymore. Last week I walked more than 10,000 steps every day except Sunday (well, according to my Fitbit). My walks have all been 2-4 miles straight which is such an improvement. Just 2 weeks ago I could barely make it 3 miles and soon I'll probably be walking 5 miles and so on. I definitely feel myself getting stronger as well, my pace has picked up alongside the distance. ---it's so weird being at this stage right now when a few months ago I didn't even consider walking a real exercise, more like a warm up... now it's THE exercise I do. The weather has been especially perfect lately in New Orleans and the walks have been helping me remember my love and appreciation for this beautiful city. There's no place quite like New Orleans, this city has soul.

Now on to the trial and error of things I can and cannot do (other than the things I've been told explicitly not to do - which is quite the list). I walked really far one day, like 5 or 6 miles, but to be fair I took quite a few breaks on that trip. I also listened to music for the first time since my surgery... and I gotta say: it was different. I know this sounds weird but I like music more now..? Maybe it's not really true... but subjectively... I enjoy music more now. For the past 2 or 3 years I almost completely abandoned music, with the exception of rap (maybe this is how I should have known something was up?...idk). But instead of music, I only listened to podcasts... day and night... on road trips and at the gym and on the way to work. Now, I can't stop listening to music, all music. It just sounds... better, the way I remember it feeling to me when I was younger and "music was life". It's just one of those weird and funny things. I also tried out 2 of my favorite hobbies: painting and gardening. The painting was pretty much the same, except after a while -- especially during the fine details -- my hand gets so tired that it refuses to grip the paintbrush. But I know that specific strength will develop over time. -But as far as style, feel, etc. goes, everything else is the same. The gardening on the other hand, did not go very well, I dare to say that I still can't/shouldn't garden, at all. It wasn't the physical labor part or the heat or anything. But the up and down and up and down required by weeding and planting was just too much for me to handle. On several occasions I felt like I was about to black out so an hour and a half after I started, I was inside on the couch trying to get the world to stop spinning... but I may have a reason as to why that is happening. The good news is, I didn't pass out and I did weed my 2 flower beds, the following day I got all my bulbs into the ground too. - maybe in a few weeks I'll be doing that in a more timely fashion. I also can finish lectures! It was taking me about a week and a half to complete them before and now I can finish a lecture in about 4 or 5 days. 

Last week I met with Dr. Dumont, the surgeon, for a second post-op follow up. We went through the regular thing, which is basically me using him as a factual WebMD (in case you haven't heard, don't trust the internet for a diagnosis). One thing I have noticed is pretty intense vertigo when I move from lying down to sitting up or move my head up and down a lot (hence the world spinning during gardening), or when I lie flat on my back. The doctor said that's relatively common but if it doesn't go away in a couple months, I'll have to go get my head rotated or something? (This is where I begin to lack all knowledge on random procedures). But, I can tell you that in our inner ear we have these cells that move the way we move, so I jump and those cells move up and fall back down, which is how we know where we exist in our own universes (relative body positioning). Well, during and after brain surgery, those little cells can get thrown off which makes me feel crazy when I move too fast or too much. Certain parts of the healing incision are also a little "juicy." I know that's horrible way to describe something, but I am drawing a blank on a better word here... and I'm not sure what that means. The numb spot is itchier and itchier everyday so I'm assuming it's from me scratching it. Dr. Dumont also recommended I take another 2 weeks off of work... and the real kicker is that we decided I shouldn't return to teaching until the summer. People keep asking me how I feel about it... I mean work also agreed that I shouldn't get back in there unless I'm 100% ready. But I love to teach, at the same time, passing out or losing it in front of your students probably isn't a good thing to risk. And my schedule this semester ranges from being at 8:00am one day to being there until 10:00pm another. But I will be returning back to work later this month, I just won't be returning to teaching... not yet. I haven't mentioned my colleagues much, but I gotta say that I am very lucky to have all of them. They have been so supportive and have gone above and beyond what they needed to do to help me out. And even better, I didn't feel any stress or anxiety while I was there and interacting with some of my friends for a short visit this week. I actually felt a sense of peace. Anyway, the doctor also said I need to get another MRI so next week I will be getting yet another scan of my brain, I feel like a professional now. In grad school we used to pay people to look at their brains... if there are any scientists out there who want to study me... I'm all yours.

So... pathology...where could it be? I have no idea. If anyone has any guesses, feel free to throw them out there. 6 weeks down and still no final word. It has driven me so crazy that now I can't even muster a little bit of care. But I did get some insight into why it has taken so long and the short story is... snail mail. They use the mail to send tissues to other labs and half of the time it's been out, it's been in transit. Maybe they secretly lost it? ...I wonder how many people have looked at my tumor/brain at this point, at least 5 or 6 (cool). The oncologist told me as soon as he had the answers, he would call me. We had hoped to hear yesterday but it should be sometime this week. I'm keeping all my fingers crossed because this is kind of the last piece of the puzzle. I'm tired of seeing doctor after doctor and would just like a little break for a couple weeks. But I guess that's part of the game. This actually reminds me of a TED talk one of my friends shared with me last week: https://www.ted.com/talks/salvatore_iaconesi_what_happened_when_i_open_sourced_my_brain_cancer#t-606953. This guy is an artist and he decided to take it upon himself to share pictures of his tumor with a large community of artists, friends, scientists, etc. instead of sitting around waiting on tests results. He welcomed insight and opinions from the masses and after surviving his surgery and recovery after cancer, he is sharing his experience with people. If you have a few minutes, check it out. Anyway, I think his video offers so beautiful insight into what's going on in your head during this experience; he also has a great sense of humor.

I know I still have a long part of the journey left to go and the recovery period isn't over. But I guess one of the weirdest things about this week was that I felt relatively normal...like I wasn't really being held back from anything anymore. I mean I still can't drive and I still don't want to be surrounded by people, but other than that I feel like the original me again, and I'm much less anxious. I saw a few friends, I hung out with Jordan, I maintained a very loosely structured schedule, and I did some of the things I really love to do. It's amazing how much growth has taken place from week to week since January 27. Some weeks have been fine and others have been horrible but things are moving forward. 6 weeks ago I had no idea what life would be like now, and 6 weeks has always been the goal period to be recovered. And here I am... recovering, but not quite there yet. I am actually mad at myself for not being where I wanted to be at this time, but looking back I realize that I have truly come a very long way. I won't say this has been easy, and it certainly hasn't been fun and relaxing but it has been a learning experience. And I do recognize that things could have been so much worse. But this is my life now... and that's just kind of weird.