Brittany Maynard in Oregon who has elected to move on on her times and not GBM IV's terms has been on my mind and reading her story has brought back a flood of emotions and thoughts. I'm about 3.5 years removed from my initial diagnosis and this "passive" recovery we're has been so much more difficult than the active recovery period (i.e., the physical recovery period from the surgeries, treatments, etc...). During the active recovery, everything was regimented and scheduled, and throw in the fact that we were just trying to get over the physical pain, there wasn't much time to think about anything else.

Now that we're in this passive recovery, i.e., recovering from any long-term affects, coping with our new found deficiencies, and just plain 'ole, trying to reshape our reality, everything is just so muddled. There really isn't a structure or clear cut plan for us to follow anymore, and we slowly realize more and more each passing day the uncertainties that we find ourselves in. I find myself thinking of how did I get here and more importantly, what do I do now. There are a million paths to take, but they all look the same.

Many of my friends have moved on, while I remain "here." I think it's both them and me finding it difficult to find that common ground. I admit that a lot of it has to do with me just being "different" now.

This "new" normal is a new reality and for me, for all intents and purposes, my old self died on that operating table, my new self grew during the active recovery, and I was born at the end of the active recovery period. Now instead of starting anew, my new self still has memories of my past self and it makes it so hard to move forward.

I find myself reminiscing once again. Just did a Google Earth session of street viewing (of the places that allow it) all of the places from my past. Of the elementary school I went, of all the homes I grew up in, of the places I've traveled to, just everything. Mind you, I did this while listening to Dustin O'Halloran and of course my Tron Legacy mix. A little background of the Tron Legacy mix, yes, it may be by Daft Punk, the kings of house music, however the music they composed for Tron Legacy just captured the feelings I had during that confusing time after my craniotomy and I suppose I still have now... Here is the mix and they should be listened in the order in which they are presented. I've given each track my own titles. These are best listened to in the middle of the night on the road...

Escape

Nowhere to Run/Face Your Fears

A New Beginning (actual name of song is aptly titled, "Prelude to Sunrise")

Inevitable?

I am still here and breathing. It has been quite a while since my last post. I suppose life has just been getting in the way. Maybe I should rephrase it and say that I have been just sorta/kinda living it rather than thinking about it. It's nice to just live and not think about what it means. I guess it's akin to being inserted back into the Matrix.

So the past few months have seen me mainly just working and trying to keep up with everything going on at my workplace. Aside from work, I've had some time to get some biking in as well. Was finally able to get a geared road bike and have been able to go on some urban adventures. However, all my road rides have been training for my mini-suburban bikepacking trip hopefully this year. Speaking of trips, I am also planning a short backpacking trip. Hoping that my for-too-long achy left foot will hold up so longer backpacking trips can be taken. For this year, I am also planning to take an actual vacation and hope to be able to do an in-state road trip.

Article on Tracey Clarke and her husband Craig

Just wanted to share this with everyone: http://news.fredericksburg.com/newsdesk/2014/03/15/sharing-the-good-bad-and-ugly-of-cancer/

3-Year Tumorversary

Well, my 3-year tumorversary came and went yesterday. I spent it at home because my brain decided to have one of its "off" days yesterday. Basically, my brain will every once in a while decide to shut down which prevents me from doing any critical thinking. Also avoiding over-stimulation is a must as well. I imagine it to be like my brain trying to run through quicksand, or as though it's running in a hamster wheel. It also sometimes feel like my brain is floating outside of my cranium and detached from my body. Weird sensations all around.

I can't quite put my finger on why this occurrences happen. Not sure if it's from stress (likely culprit) or from something else. It's come on both in times of high and low stress, so who knows. I think maybe this episode occurred from my mountain bike escapade from this past Saturday. I went on a route I haven't ridden in three years now. It's rather steep with a good amount of elevation in a relative short amount of distance. I may have pushed too hard this time around as I was in oxygen deprivation for a longer period than I normally am. Typically after a climb, if I rest a bit, then I'm back to normal. However, after the climbs on this ride, it felt different, like the light-headedness just wouldn't go away. Even on Sunday I felt off and my brain just didn't seem right. Unfortunately I can pinpoint exactly what it felt like, but just felt off.

So normally when my brain decides to shut down, all I can really do is try and let it veg and not do anything. I awoke this morning feeling a little better, but as of this moment, I still feel somewhat off. I guess it typically takes me 2-3 days to get back to "normal" levels when this occurs. I thought about taking the day off from work today as well, but it's been so busy that I couldn't afford to miss another day. Like so many times, I get to start thinking about my situation. I start thinking about what a bummer that I'm going through this episode. Then start thinking about how this episode is another reminder that I have brain cancer, then another reminder that I'm not normal, then it spirals down to the fear of missing work and decrease work efficiency, then potentially losing my job, then my insurance, livelihood, etc...Oh what a wicked cycle it is.

The odd thing is that, I've never really had the thought of "Why me?" cross my mind. It's always been mainly, "Why now?" Like this brain cancer and episodes have been and are more of an annoyance more than anything. I hope not to cross the line and hoping that I can stay behind the line. Anyway, I guess a happy 3-year tumorversary to me.

1/21/14 MRI Result

My routine 3-month MRI scan this past Tuesday shows my tumor is remaining table. My next scan will be three months from now in April. Dr. Hu stated that if things remain the way they are, then he'll likely move me to a 4-month cycle.

Not sure if it's because my folks accompanied me this time, but Dr. Hu provided a summarized overview of steps that can be taken in the event there is regrowth. I think he did this to give my folks a better understanding of the situation since they don't typically come with me. Anyway, I'm glad he did because I'm sure it was beneficial to hear it directly from the doctor.

Although my scan shows everything to be stable, this week hasn't been so great. Actually, the past couple of weeks, I've been experience dull headaches accompanied with the usual hyperactive tinnitus. However, this past Wednesday my dull headache became rather acute towards the latter half of the day and lasted through the night. I haven't had this bad of a headache in a long while. I didn't get any sleep at all Wednesday night as my headache was pounding and ended up missing work. Veggie out Thursday helped subside the headache back to a dull one, but it became acute once again as the evening came around. Fortunately, it wasn't as bad as the previous night, but I still only got a few hours of sleep through the night. When yesterdat morning came around, I still felt out of it and missed another day of work.

Well, my brain has improved this today, but I can still sense being "off" from my "normal" self. I'm not certain, but my headache is likely from stress at work, or overstimulation from somewhere. Maybe it's from tapering off of the Keppra, who knows. Maybe all of the above. However, I do find veggie out to help, though I'm having trouble writing this entry which is a bit disconcerting.

Anyway, hoping things will improve the next few days and I'm looking forward to Monday being the last time I'll have to take Keppra for the foreseeable future.

Finally got a chance to watch Before Midnight and this dialogue really stuck out. Living in the unknown can be really draining and the since my diagnosis in 2011, that's all my life has been, ONE BIG UNKNOWN. It was unknown in my initial diagnosis whether I had two masses in my brain or just one. It was unknown whether I needed an spinal tap or not. It was unknown whether I was experiencing epileptic seizures or not. It was unknown whether the anti-seizure medication would help. It was unknown when if I might have a tonic clonic/grand mal seizure. It was unknown whether I'd ever get rid of the balance issues I had. It was unknown if radiation therapy or chemotherapy would be the best choice. It is unknown whether I'll be here 2-3 years from now. It is unknown what my quality of life will be. It is unknown whether I should just cash out my 401K. It is unknown whether to save for the long-term or to just live for now.

So many unknowns...I've thought about what is elaborated below. The finality of the situation brings about a certainty that is welcomed.

CELINE: Yeah. Do you remember this friend of mine? George, from New York.

JESSE: No.

CELINE: Oh, no, that was before. That was before.

JESSE: What was?

CELINE: He was this friend of mine that, when he found out he had leukemia, and he was probably going to die, he confessed to me that the first thing that came to his mind was relief.

JESSE: Relief? But why?

CELINE: Well, before he found out he had nine months to live he was always so worried about money, and now his thought was, great! I have more than enough money to live for the next nine months, I've made it!

JESSE: (Laughing) Oh, okay.

CELINE: And then he was finally able to enjoy everything about life, even like being stuck in traffic. He would just enjoy looking at people... staring at their faces. Just little things.

Countdown to being off meds T-Minus 2 Weeks

I met with Dr. Chung today and he deemed it would be okay for me to get off Keppra. Since our last meeting about 6 months ago, I haven't had many symptoms that would be deemed to be consistent with those of a seizure. There have bouts of dizziness here and there, but they've been less and less frequent and the circumstances surrounding them seemed less related to a seizure-episode.

Per standard protocol in getting off any anti-seizure med, I will be on a tapering schedule. Starting tomorrow, I'll only have to take 500mg from my current 1,000mg for the next two weeks. After this time, I can stop completely. Dr. Chung would have liked me to possibly start the taper schedule a bit later after I told him that I'll be busy at my work for the next few months. He mentioned that typically he prefers for a person to taper off a med during a relatively stress free period because stress could trigger seizure activity. However, I decided to start it now because with my job, there is never really a lull period and if there is, it's really unpredictable when it might occur. So if I waited for a lull period, I could be waiting indefinitely. After stating this, Dr. Chung agreed with me and was okay for me to start the tapering schedule now. He did preface it by stating that for the next one to two months, I should try to get as much rest as possible in order to minimize the chances of seizures occurring.

Well, I think this is a positive step and will see if getting off Keppra will help with things overall (e.g., get rid of fatigue, mental dullness, etc...). I'll be meeting with Dr. Chung again in three months.

Found out today that Tracey Clarke is no longer with us, that she passed from her struggles with GBM. Though I have never met Tracey, in reading her blog, looking at her art, and reading the postings of Craig, her significant other, Tracey seems like a beautiful person. Someone that would enrich anyone's life that knew her. Rest in peace Tracey...