10/22/2013 MRI and Meet with Dr. Hu

Had my routine 3-month interval MRI today at Cedars-Sinai. The appointment was at 9:30 AM so of course I left at 5:45AM to beat the SoCal crush up Interstate 405. Surprisingly, I arrived at 7:30 AM which gave me the opportunity to have breakfast.

I decided to check in early about 45 minutes before my scheduled time and was pleasantly surprised to get called in only a few minutes afterwards. The MRI went as normal. The vein at my right elbow even cooperated this time. It has been shy for the past two years, probably because of overuse from my two stays at the hospitals. So all of my IVs and blood samples have been either at the hands or forearms prior to today. As customary, I fell asleep due to the soothing beats generated by the MRI machine.

Since my scan was completed early, I decided to check in early as well for my meeting with Dr. Hu. Again, to my pleasant surprise, I was shown in and didn't have to wait long for Dr. Hu. The first thing he said was that everything is stable to my great relief. We both then went over my scan from about a year ago to days and everything looks the same. After viewing the scans, Dr. Hu mentioned that he'd like to keep  me at the 3-month MRI cycle for my next two MRIs and then will likely move me to the 6-month MRI cycle. I am not sure how I feel about this yet. In a way, it's nice to be on a 3-month MRI schedule because there's less anxiety about what could be going on up there in my brain. However, I suppose the 6-month MRI schedule would in a way signify that circumstances are such that I needn't worry too much about things overall.

A poem written by Aislinn whom I met on Twitter through the Sunday #btsm chat. Aislinn was kind enough to allow me to share  these words:

Staring blankly at a shattered mirror
Where void of emptiness appears surreal
Unbearable silence wandering near
The ghost of whom it will never seem real.
Curiosity in the kindest way
Where words wasted to be too serious
Where the words wasted are taken astray
Creeping melancholy mysterious.
Where plows dig up the soil of growing land
And leave behind the fields filled with forsake
One under the false pretense of command
A barely breathing forgotten mistake.

Keeping close pieces of which I once was
But keeping pieces close only because

Went out surfing today for the first time in about 16 years. The result, pretty bad! However, can't be surprised considering I only surfed about 10 times before. However, it was great to just be out there again. The water was warm, the sea air was salty, and the set of waves came in nicely. Now I get to enjoy a few days of really sore arms, the experience of having gone out there, but most importantly, not having the regret of not going.

So why now, after 16 years? I guess it's part of the "don't be a human being, but a human living' mandate given to me by Dr. Wertheimer. Also, I've been recently living with the mindset of, "Might as well..." My loved ones and people who care about me have been encouraging through this ordeal. They've encouraged me to believe that I will live beyond my prognosis, no problem. However, I guess for some, myself included, it's easier said than done.

2-Year Craniversary Mountain Bike Ride

As a way to celebrate and reflect on being two years removed from my craniotomy, I decided to go for a ride. I've been riding for the two months and slowly have been building up my endurance. The farthest I've managed to ride has been about 16 miles with 2,500 feet of total elevation. Since today is a special day, I wanted to go on a longer ride with more elevation.

In a way, going on a long difficult ride makes me feel like I am living. The more punishing the ride, the more aches I feel in my legs and in my lungs, the more I know that I am still here, that I am a human living and not just a human being who happens to be alive. Also, a part of me feel as though I am riding for those out there who can no longer, unfortunately, do the things they loved before their diagnosis. So the longer ride was my way to reflect on everything.

Before riding again a couple months ago, my last ride was back on Memorial Day in 2011. I was a few months removed from the stereotactic needle brain biopsy. I had still been able to ride after my recovery from this procedure and had actually gone on several rides. I didn't want to give it up. Though I enjoy the struggle and pains that comes with this activity, I knew that the issues I had on the Memorial Day ride were different. They were atypical of the usual struggles a person can deal with on any ride. My head felt so full. The pounding in my head were unlike anything I had experienced before. So on that day, I decided to give up riding.

The weeks and months following my craniotomy, I thought about biking once again. Maybe not on the mountains, but just around town. However, the lingering issues I had with dizziness and wooziness and just my balance in general were roadblocks to getting back on the saddle. But through much help from Debbie Struiksma, my neurologic physical therapist, my symptoms improved little by little over time. Earlier this year, I decided to get on my commuter bike. Not so good, almost crashed into my brother's brand new truck. Then one day, I decided to try again and NO ISSUES! I rode a bit more and more on my commuter. I then had a chance to take out a mountain bike to a local trail and things went good. So about two months ago, I got a new bike and I've been thankful everyday that I am able to ride again.

Today I did this: http://www.mappedometer.com/?maproute=205312

Update to July 23 MRI

I had my 3-month MRI up at Cedars Sinai this past Tuesday. Boy, the injection of the dye really hurt this time around. I think it might have been injected a bit to fast. However, as usual, I still fell asleep. Something about the steady vibration and the beat of the machine that just knocks me out.
Well, I met with Dr. Hu afterwards and upon examining the MRI scan, the tumor is remaining stable. No growth or shrinkage. I had somewhat expected that Dr. Hu might recommend moving onto a 6-month cycle so I went ahead and asked him what his typical parameters are in making that decision for his patients.

He informed me that of course it's really case-by-case specific. The usual things he looks at include the type of tumor someone has, the progress someone is making, and the time that has lapsed since surgery. He typically likes to keep his patients on a 3-month cycle for up to two years after surgery. When I asked him that it'll be two years for me a couple weeks from now, he said that in my case he would still like to keep me on the 3-month cycle. The reason primarily is because I am still having issues. The past month haven't been the greatest as there's been an uptick in my bouts of wooziness/dizziness instances of my mind just "shutting" down likely due to fatigue. I've had to take a few days off because I just couldn't get my brain to do any sort of advance critical thinking. There were a few days where my brain would just be literally buzzing and I would have to just "veg" out. It might be because it's been pretty busy at my work and things may be catching up to me. However, I'm not sure.

Anyway, Dr. Hu said that because I'm still having these symptoms, that he would like to remain on the side of caution and have me stay on the 3-month cycle to keep monitor of whether my continued symptoms may or may not be related to new tumor growth. I completely agree with this. At least if I continue to have symptoms and my tumor remains stable, it's something that can be ruled out.

A frustrating aspect of this is that I feel as though my issues with my brain are an equivalent to someone being diagnosed with "irritable bowel syndrome" or "fibromyalgia." My doctors seem to know that I have problems, but aren't sure what the root cause is and are not sure how to possibly treat it. I guess it's hard to treat something when the root cause is unknown. I'm slowly accepting the fact that I may just have plain old brain damage and there's nothing that can be done. I'm almost there, but plan on seeing another neuropsychologist at UCLA this time. I am not placing too much hope, but I'd like to try just one last time to see if there might be something out there to help me with my brain processing issues.

Next MRI is scheduled for July 23 and I'll be meeting with Dr. Hu afterwards on the same day. At least I won't be meeting Dr. Hu on my birthday like I did last year!

My Old BrainTumorThursday Blog Entry

This was my blog entry that Megan (memomuse) posted in her BrainTumorThursday series back in July of 2012. I came across this the other day and reread what I wrote and it still resonates with me. Though I'm at a "better" place physically, emotionally, psychologically, and have moved forward a bit in my "new normal" post-diagnosis life, the feelings I put down below are still there, just under the brush.

Archaeology of the Brain

I hope….

To one day not have to "act" normal, but just be. To be able to live my life the way I lived it before my diagnosis and not have the thought of my own mortality be at the forefront of my daily life; not have so much uncertainty as there is now in my life; not have to live my life one MRI-cycle at a time; and not have to second guess all my actions and ask myself, "Am I only doing this because I may not get a chance to do it again?"  

I hope to finally do that cross-country trip I've wanted to do since I read On the Road, to finally go back to Cusco and visit Machu Picchu, and to finally do the century ride from Orange County to San Diego I've planned since 2008.

I wish…

That a cure, not a treatment, but a cure will be found not only for curing brain tumors, but all cancers. I wish that once this cure is found, that all will have access, not just the opportunity, but actual access to it no matter who they are and where they come from. 

I wish for a day where we won't need #BTSM, #BCSM, #cancersucks, #scanxiety, or #BrainTumorThursday.

On a more personal level, I wish I didn't have to put my family through this, particularly my folks, Mom and Dad. They've been through so much and have faced so many challenges in their lives, so I wish for that day where they won't have to worry about me anymore.

I dream…

About that special someone who I will come across randomly, of which we will become great friends because she gets and finds my terrible humor "amusing."  I dream of that dedication and passion we will develop that only two people who truly love each other develops. I dream of our first child, a girl named Isolde who is inquisitive, independent, passionate, and kind and of course a great big sister to her little brother Rand, and little sister Dagny. I dream of my three children growing up to be passionate about a cause, to be compassionate of others, to think freely for themselves, to never stop learning, and to overall be decent human beings. 

I dream of the milestones they will reach, graduation from kindergarten, then 6th grade, middle school, high school, college and the rite of passage we all go through. I also dream of the little bumps along the road they will face of which their mom and I will be there for them to help guide and steer them to come to a solution. All in all, I dream to grow "old" and to see my love ones grow up before my eyes. It is all but a dream though...

I am (be)…
Just me, someone who's doing my best to unravel the mystery of this so-called life.


3 things about me;
---I was an archaeologist

---Have been to Cusco twice, but never to Machu Picchu

---I loved The Fountain Head, but threw The Atlas Shrugged across the room several times...

diagnosis and treatment;
February 9, 2011: Lesion in medial right temporal parietal lobe found from CT scan, confirmed by MRI
February 15, 2011: Stereotactic Needle Brain Biopsy which diagnosed lesion as a hamartoma.
August 4, 2011: Craniotomy performed which diagnose lesion as grade II oligoastrocytoma
December 6, 2011: Radiation Therapy Session 1 of 28 (180 centigrade of radiation per session, 5,040 centigrade total)
January 18, 2012: Radiation Therapy Session 28 of 28
Current: Ongoing evaluations for recurring "episodes"

favorite quote;
"Walk on road, hm? Walk left side, safe. Walk right side, safe. Walk middle, sooner or later, get squish just like grape..." - Mr. Miyagi

"Do or do not, there is no try..." - Master Yoda

Brain Tumor Social Media a.k.a. #BTSM Tweetchat (1st Sunday of the Month)

*Update* The #BTSM Tweetchat is held the first Sunday of each month.


The “Brain Tumor Social Media” Twitter community successfully organized its first “tweet chat” a few Sundays ago, 7 PST/10 EST. The chat was so successful that Cure Today’s Elizabeth Whittington wrote about it just a few days later on their blog.
The #BTSM group will continue convening through the tweet chat format each Sunday from now until Twitter no longer exists. Join us!
An important thing to remember is that #BTSM is a patient-run Twitter community and is not owned by any organization, nonprofit or otherwise. We are for patients, by patients. #BTSM tweet chat moderator @CBlotner_ is working on organizing guest tweeters from the brain tumor community, like physicians, researchers and advocates.
Just in case you don’t use Twitter, or do use Twitter and have never participated in a tweet chat, here’s how you can participate:

How to take part in the #btsm tweet chat

1. Register for a Twitter account. Scared of Twitter? Hey–if you have a Facebook account, you can find your way around Twitter. 
2. Stay logged in to Twitter… then visit TChat.io
3. In the box in the middile of the TChat home page there is an area to enter a “hashtag.” (Find out what a hashtag is.) The brain tumor social media hashtag is BTSM. Then click “Start Chatting.”
4. The #BTSM tweet chat page will load and you will see all tweets where a Twitter user used that #BTSM hashtag.
5. The page will automatically refresh itself every few seconds to load more tweets.
6. When you are ready to take part in the tweet chat you must click the “Sign in” button in the upper-right corner of the TweetChat.com page. TweetChat will then want to link your Twitter account to the TweetChat website. This is safe to do! Click “Authorize app.”
7. Once you are logged in there will be a box at the top of the page where you can enter your message (tweet). This box will automatically add the #BTSM hashtag for you.

Easy, right? (I know some of you are shaking your fists at me right now.)
Leave questions for me in the comments… or tweet me at @TheLizArmy. You can also send questions @CBlotner_, the #BTSM TweetChat moderator.

Watching Water - Alias

Recently came upon an old box of CDs I haven't listened to in years and years and the other day found this track, Watching Water, by Alias. Been listening to it since. It's always been a favorite of mine, but it's even more poignant now considering everything...

Listen to it here:

Here are the lyrics:

Intake ambiance a tool for meditation
Progressing towards the clouds with at whom I am complete
Defeat the chains that restrain an eager sensation
Equal balance in and out, all inhibitions shall deplete
(X2)

I'm trying to break this writer's cramp, massage my hand and daydream
Out the window innuendo, watch the water find it's path down the glass.
It seems, erratic direction, it's only perfection.
Rest my head inside my hands, pace back and forth inside my mind.
I wish sometimes I wouldn't reminisce so much.
Such things, tend to make one reflect and dissect situations to an extreme.
Hard now to redeem what was there before
No more gone are those days and ways have parted.
Gone from feeling solid trust to outsmarted.
Anyway, I'm now moving on to a distance far from yesterday,
It's best this way.
I feel as though I've missed this moment of truth
Outcome uneventful. I've lost the ability to feel sentimental
I can stare at a puddle and see a million places I love.
It's comforting thoughts of places I've been, places I will never see again.
Send my love to all who were there, wishing I could crawl back in.
But, I've transformed and the pieces wouldn't fit, so the sore necks will cease.
Eyes searching to the sky to try to find some form of peace
And I keep pulling up blanks, yet I'm wearing this mask for the sake of others.
We all miss things I suppose, we must let go, well I'm not ready.
Just let me sit in silence and soak in what's trailing down the window,
To cleanse my emotions, to begin the process of preparing myself.

Intake ambiance a tool for meditation,
Progressing towards the clouds with at whom I am complete.
Defeat the chains that restrain an eager sensation,
Equal balance in and out, all inhibitions shall deplete.
(X2)

I watch the drop join it's friends and become one with the crowd.
Relating all too well, forcing me to sigh out loud,
Look into clouds, to envision, the inside of my head.
I'm turning leaves at this turning point. Remembering what they said,
As they drove off one by one.
They left taking pieces of me until I felt empty inside.
Already looking forward to that day when I'd be returning.
And I hadn't even left yet,
From then on I took the inside out approach.
I'm granted lots of time to think when when your new position is coach.
And your team is sleeping the whole time, when it's 2:40 am in the morning,
And you're in the middle of nowhere with the buzz of the AM radio
The only one that's there.
Think a lot about life, that's where it all began for me,
The more I thought, the more I began to clearly see
Absolutely every aspect of my life in a new light.
I figured out my Rubix Cube...well I got it somewhat right.
And things are coming together as I slowly come undone.
And the occurrence known as the "it" is swept under the rug,
And now my burden weights a ton.
But it only makes me stronger and I refuse to break.
I'm letting things pass by, for the family's sake.
Just give me a picture of the truth so I can hold it near,
And watch the rainfall, syncopated with one lonesome tear.

Intake ambiance a tool for meditation,
Progressing towards the clouds with at whom I am complete.
Defeat the chains that restrain an eager sensation,
Equal balance in and out, all inhibitions shall deplete.
(X2)

Hello. Sorry I haven't posted in awhile. Sometimes it can get overwhelming to journal or blog about my brain tumor. It's a part of me now always, but of course I just want to get away from it from time to time. Blogging about it can bring me back to a place that I want to try to avoid as I rather just move on with my life as best I can.

So what have I been up to lately...Let's see, I just got back from a trip to Mammoth Mountain Ski resort and had a great time. I was a bit hesitant about going, but so glad I did. Funny thing was that when I was getting my boarding gear ready at home, I found that my board pants still had the lift ticket attached on to it from the last time I had gone boarding. I looked at the date which read 1-29-11, basically two weeks before my brain tumor diagnosis. Boy, little did I know. It reminded me again of just how quickly circumstances can change for someone.

I still remember that day. I had gone up to a local resort with my two friends eagerly awaiting to try out my "new" used Burton Custom board I had just gotten. It was a fun day and my board did not disappoint though the day on the slopes did end with my crashing into a fellow boarder. Yep, my snowcap flipped off my head and everything. Oy vey! However, we finished the trip off with a stop at an eatery I always go two after boarding. The tradition of going to this particular restaurant had started with another group of friends and I and I was more than happy to keep it going with these two friends. During the whole time, I remember us chatting about going up several more times that season and how forward I was looking to it. *sigh*

Anyway, back to Mammoth! As I hadn't boarded since 2011, I was a bit unsure because of the rust from the layoff and from everything I've gone through that's affected me physically. I decided to drive up early and did a half day of boarding on Friday. Sitting on the lift in the spring like conditions, I gradually became more convince it was the right choice to come. As the top of the lift came closer, the familiar fear and thought of not falling over while getting off the lift came over me. However, instead of my usual dread (getting off the lift, it's a mental thing for me!), I actually welcomed it as it felt like old times again. So off the lift I went and voila, slid all the way to the bench with no problems! Before my first run, I breathed in the crisp air and just took it all in. A part of me couldn't believe I was here as I didn't think I would be able to board again. However, there was still the small task of actually boarding! I thought to myself, "What if I can't do it?" Then I thought about what Dr. Wertheimer, told me about how I need to be less of a human being and be more of a human doing. So I strapped myself tight, got myself psyched up and went down. Just like old times...

1-22-2013 MRI Results

A bit late in posting, but my MRI last week showed my tumor to be stable. I will have another scan in three months.

My next MRI and meeting with Dr. Hu is scheduled for January 22. Let's see how this goes. I think if this scan shows my tumor as stable, Dr. Hu might think about moving to a 6-month MRI schedule. We'll see.