Checking In and Still Living and Breathing

I'm still here, just living. Since my last entry a few years ago, I've tried to put a semblance of "life" together. Not sure how it's going. Guess I can say that it's been a bit boring and not exactly what I imagine post-life after cancer would be like. I suppose I sometimes trick myself into thinking there's a clear demarcation line between the "cancer life" and the "I'm going going to live my life" lives. Saying this though, I guess there really isn't such a thing as post cancer life, at least not physically. The term, remission, just isn't used for people who have brain cancer. Instead, the metric and term more commonly used with brain cancer is "progression free survival".

However, as a mental construct, I have been living life from the post-cancer perspective. Granted, I still have long-term cognitive effects and I guess emotional effects resulting from the whole experience, but overall, I have felt that I've just going about my business as best as I can. One thing that I had a hard time doing was to plan long-term. I still do a bit, but have recently decided to look at buying a home. Guess a person can't get more long-term than this. It's been exciting in that in a way, I'm ready to move on with my life, but at the same time scary as well for the same reason. So many unknowns and it's a little sad for me to thinking about what a late start I got. A rule I promised myself to follow was to not look back and to not have pity parties. It's taken quite a bit of myself to hold back on feeling pity and anger with my situation of how I feel like I'm just getting act together now. I should have been going through the process of buying a home years and years ago in my 30's, not now in my early 40s.

I guess with buying a home for me, also comes the thought of having a partner in crime along there with me. I've been reminded every moment along the way with agents stating, "yes, you have to make the best choice for you and your family." As you can probably tell by now, I'm going through with the home purchase solo, just me, myself, and I. It's a small victory that I'm even at this point and I do feel so ever grateful that I am consider where I've been, but also where the US and the world is right now with covid19. However, it does still hurt a bit because in general, I figured I'd have a family by now as well, but also because the statement does serve as a reminder a bit of my last relationship I had that ended about a year ago. Yes, I know, it's been a year, and I'm over it and have moved on for the most part. The part that lingers is the fact that supposedly one of the reasons why the person ended the relationship was because she was afraid that if she chose me over her family, and I happened to die from a cancer recurrence, then she'd have nobody because her family will have disowned her. Long-story short, it supposedly came down to her choosing either me or her family/religion, and she chose the latter. Was it really this? Who knows really. Maybe she simply just wasn't that into me. Suffice to say, it was a complicated relationship.

Overall though, I can't complain too much. Physically I've been good and I still have a job. Over the last 5 years, I've had many adventures too. After getting off my meds in 2014 or so, I essentially felt instantly better physically. Well enough that I started rock climbing, because why not. Also, funnily enough, in 2010 because my DX, I had thought about learning to rock climb in 2011. I didn't get a chance too for obvious reasons, but in 2015, I figured it was time. I signed up for a class at a local gym, then before I knew it, signed up for a class to learn how to climb in the outdoors. One thing led to another, and before I knew it, I was leading climbs in Yosemite and Joshua Tree. As if rock climbing wasn't enough, I also got to paraglide solo and learned how to ski and went on a self-guided backcountry ski trip up Mount Shasta. More importantly, while having seen so many wonderful places, what's been great have been all the new people I've befriended along the way. Honestly, it's still been kind of odd-feeling for me in interacting with people because I still don't quite trust who I am, or really know who I am. But, it's been nice to know that this post-cancer version of me can still make friends and be sociable.

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.