The show must go on!

"Continuing on with its 33rd season, you know it, you love it (maybe), the Jason Decent show!"

As continues to be the case, I had my last MRI two weeks ago on...a...Thursday. It may be self evident, but it's generally unwise to make assumptions, so I'll just tell you, MRIs are important. They are important because a Dr. cannot just look at your brain like a bruise on your arm or a cut on your finger. The MRIs provide the clearest image of the actual situation for both Dr. and patient.

But, in addition to this particular MRI detailing the results of the past two months, this MRI also detailed the results of the last year of treatments. A week before the MRI I finished my 12th and final round chemotherapy pills. The MRI would show the status of my head after radiation, after a year of chemotherapy pill rounds, and after daily clinical trial pills.

Early Wednesday morning I went in to see the positive picture. The afternoon of the MRI my Dr. had called to notify me it looked good, but on Wednesday I could take my own good look at the image. The remaining tumor had shrunk, again. I can't do the exact math but the tumor shrunk by a lot in the course of a year. By comparison it used to be larger. Now it's not. I dunno, 1/16th the size of before maybe? Simplified: Less brain cancer = good. 

Right now chemotherapy is not considered an effective tool for continuation. I will, however, continue taking the daily clinical trial drug. It produces few side-effects. At least in combination the trial drug seemed to be helping, and now we can determine its effectiveness alone - hopefully it continues to rate as very effective.

My next MRI, in mid-July probably, will detail the current state of things. Until then there's not much more to do other than keep taking my daily pills (and try to be somewhat healthy...). While I'm assured there are plenty of options if the clinical trial pills are no longer effective when on their own, I would just as soon have them be super effective and continue to diminish or even eliminate the tumor. But it's not until the next MRI that we'll actually be able to see. Talk about a cliffhanger... Tune in next time! I will.

For the win!

What is winning? How do you win? What is losing? How do you lose? I guess it depends on the definitions you assign them. As an individual you usually win by defeating your opponent. If there are teams, you as an individual win by belonging to the winning team. My experiences have forced me to contemplate those definitions in the extreme. To think of them in the frame of life and death. If they line up directly and I die at some point, does that mean I lost? Did I beat someone that died a day before me? Did I lose to someone who died a day after me? How about two days? Three? A month? When’s the cutoff? Where’s the differentiating line? Or, what about someone born and dead before I even existed? Or before my parent’s existed? Did I beat the billions that preceded me just because of where I appeared on the timeline? Every single person eventually dies. Does that make us all losers? 

In every contest there is usually a winning party. Professional sports teams I like try each season to win their respective league championships. Sometimes they do win. Often they do not. The schools I’ve attended field various teams in various sports that also compete for various championships. I cheer for their success. I want them all to do well. I want them to win. Often they don’t. Even politically I usually lean one way and align with one party’s view but they still lose a lot. Looking at it that way, I lose a lot. But, I don’t literally play on any of the teams that I cheer for.

However, there is one team that I do “play” for in actuality. A team that just by virtue of birth I belong to. I am a member of the human team. And everybody reading this probably is too. It’s the one association that you were born with, that’s entirely immutable. No matter what sports team succeeds or what political candidate prevails, that fact remains constant. That is still your team. That is still our team. In fact, with regard to the human team, you may have been cheering against your teammates in other contests. And you may not believe you have to associate with that lowlife in this contest. But, in the game of life, this is a teammate. Cheering against them in this one contest is counterproductive as long as they might help your team.

It doesn’t mean supporting every person all the time no matter what. It doesn’t make others infallible. It doesn’t discount you for them. It only serves to reframe the issue so that you see advances as a collective win instead of just an individual victory. If someone’s act pushes the entire human species a little further forward, that helps all humans. If someone’s act ends up pushing someone else in front of a train for their own benefit, it’s a collective loss. Collective wins are to your advantage. Collective losses are at your expense. Even if you are the one person trying to win, if you do it by pushing someone else in front of a train, you hurt your team. The team that you can’t escape. The team you belong to no matter what.

When I got sick the first time I lacked confidence that I could defeat any opponent at anything. Reframing the issue provided some hope that maybe I could participate in a success. But, even after I reframed the issue, I still doubted my ability to contribute to my team’s success. However, as time has gone on, I’ve come to see that not only do we play for the same team, but my existence, and your existence, and all of us, are capable of pushing our entire species a little bit further forward. Just a little bit ahead. Bringing your own unique talents and experiences and existence to bear. Even if it’s just adding to the support of someone else who can in turn push the team forward in their own way. Maybe a way you or I aren’t capable of. And when I leave, or you leave, doesn’t determine our success or failure. That’s not what makes one person a winner. You can help just by being a good teammate. Just by helping your team.


What's your current status? - Good (figuring things out).

Thursday I went through my, different but now normal, process of an MRI. I briefly spoke with my doctor on the phone Friday to assure that things looked good before the weekend (they did). Monday morning I met with him in person and actually got to see the MRI image. There's not that much else to report. Literally, the remaining tumor, or scar tissue, or whatever it actually is, is minuscule (although not much can actually be considered minuscule when dealing with a brain tumor I guess). Because of it's current small size, and because it has only trended toward smaller, our strategy is to continue down the same path. Slow and steady wins the race right?

What to attribute my current circumstances to is uncertain. I take chemo pills for five days in a row every four weeks for a year. My 11th round of chemo pills starts in early April. My 12th, and final, round starts in early May. I also take a clinical trial drug daily. I remains unclear if I would have responded similarly without the trial drug. I still would have had the same chemotherapy and radiation regardless. But now, once chemo ends, I will continue with the trial drug. That may help shed some light on whether the drug has any effect on its own.

The plan going forward - I was interested so in the case that you are too - is to continue taking the trial drug. As long as it doesn't produce any ill side effects I will keep taking those 12 pills a day. That continuance should lend more insight into the drug's effectiveness. Additionally I will continue with MRIs approximately every two months to allow more monitoring of the situation. So, roughly every two months I'll get to see another status update!

Inward Spaces

    Last week I got to present some words to some people in an audience. The event, or the show, or performance, took place in a loft space in Los Angeles. The loft ha…actually, it doesn’t matter what the loft was like because the audience was blindfolded prior to entering and remained so until the show ended. Audience members were assisted and helped to their seats by blindfold put-er-on-ers and seat-finding-helper people. Then, a variety of auditory based performances took place. The event was called “Inward Spaces.” It consisted of many poets, musicians, storytellers,…and me. 

    I’m not that accustomed to presenting things, especially when relying solely on my voice. Usually during conversations I can at least lean on facial and hand gestures to aid in the translation. But not here. The blindfolds assured it. So I only had inflection and intonation at my disposal. That meant I had to do my best to surmount the monotone cadence and delivery I often lapse into. That also meant harnessing many of the lessons I learned back in Speech Therapy. And that meant focusing on the seemingly mindless, but supremely important, breath. And, that also meant accepting that the words I would say would come out slower than the same words would from someone else. I had to accept that because that was the reality. Legendary UCLA basketball coach John Wooden used to preach, "be quick but don’t hurry,” to his players. Hurrying on my part would lead to indecipherable mumbling that would confuse my audience.

    Above the multitude of good reasons, I think it was especially important for me to participate because Inward Spaces represented one way to help approximate my own experiences for others. A way to shift perspective. I couldn’t pass that opportunity by. So, while many of the other performers presented their work to the seated listeners, hopefully I could provide them with a different way of experiencing that work. Here’s what I said:


    I don’t generally talk to crowds. They say to picture the audience naked. It’s much easier to talk when so much of the audience actually is! WOW. Hmm. (Ok, no one was actually naked. I WAS KIDDING. But they couldn’t tell what the rest of the crowd looked like because they were wearing blindfolds. That’s why it’s funny. And a special thank you to Javi for inspiring my initial audience unsettling.)

    Well, being blindfolded is a good way to temporarily disrupt a sense. Hopefully by “disrupting” one sense, other senses will erupt and then you can better rely on those.

    I’m not blindfolded but I can empathize with disrupted senses. That’s because 3 brain surgeries and 2 lengthy hospital stays spread over 6 years removed malignant tumors in my head. As a result I sound this way - a bit off - and many of my senses were disrupted. 

    Just like every person is different, every type of cancer is different. And so every person’s cancer is also different. There may be some similarities in each type, but, overall, they’re each an imposing, scary, and unique snowflake. Or spider’s web, or something scary.

    My cancer specifically grew, both times, near my cerebellum. The cerebellum is in the brain. Toward the back bottom middle. It controls coordination in the body. And pretty much everything anyone does involves coordination. Walking, talking, eating, seeing, etc… so pretty much everything that I did got injected with an added layer of challenge. The second surgery, during my first hospital stint, especially disrupted my coordination. The surgeons worked aggressively to remove the cancerous growth. The aggressiveness of those actions resulted in no cancer for 6 years, but it also resulted in a greatly diminished ability to coordinate.

    For example, I used to be good at sports. OK, fine, I used to PLAY SOME sports. Wait, you don’t know me… I used to be SO GREAT at sports. (Another special thank you to Julie for encouraging me to be more emphatic in the difference here, therefore I think funnier.) And I used to read through things very, very quickly. Like super fast! Now, not so much. Not so much with the good at sports and the reading quickly and with unlocking doors and talking and eating… BUT, but, I am so much, SO MUCH, better at those things than I was just after surgeries. The just-after-surgery me set the bar VERY low. The way-pre-surgery me set the bar very high. Do you then kind of see, ummm, can you imagine, where this might be going?

    Realistically, I may never be the equivalent of my way-pre-surgery self. But I can conjure the image and the feeling of what it’s like to catch, dribble, and shoot a basketball, throw a baseball or football, ride around on a bike, sprint along a track. To quickly skim a magazine article or slog through a dense legal text. I can picture doing these things well because I have a constant reminder of my previous abilities inside my memory. So I constantly have something to aim for. Since many things were physically easier, so often subjectively better, before surgery, I grasp at some of those same abilities now. 

    Luckily, for just a low low price of - free, you can have lots of the brain surgery “fun” yourself without all the associated pains and difficulties. No chemotherapy, no radiation, no weeks long hospital stays and regular MRIs and regular blood draws, and bills, and insurance, and…ok…you probably got it, although it probably also wasn't really that necessary to drive home, but Cancer sucks. Anyway, one positive, one silver lining, because what else would you do in a similar situation but settle on a potential silver lining so that your entire day every day isn’t pills or chemotherapy or radiation or blood draws or insurance or…ok. The silver lining, is knowing for a fact, is being absolutely, 100% certain, that things could suddenly, get, catastrophically worse than they are.    Ehhhh.   I know, that doesn’t sound so great. I bet now you probably want to pass on the whole brain surgery thing huh? Well luckily you actually can because you         have         a            BLINDFOLD!    Y - A - Y.

    By having a blindfold on, you are afforded the opportunity to disrupt an entire sense on which you heavily rely. It’s probably a sense you orient most of your life around. And then, when you’re done with your thought experiment you can just remove the blindfold. Poof…you’re back to your normal, everyday existence. Except you re-enter that existence carrying with you the mystical power and strength of the BLINDFOLD. You now have this subtle memory of your world disrupted. And by having an idea of a disrupted existence it’s much easier to see the silver lining in your life, when facing your own multitude of trials and tough breaks and hardships. Your life may appear just a little bit brighter, maybe a tiny bit easier, because you know a way that it is UN-disrupted. Undisrupted in a way you might not have thought of otherwise. Your disrupting experience may even enhance your appreciation and awareness, and demonstrate how a few of the difficulties you confront in everyday life maybe aren’t quite as bad because at least they aren’t as disruptive as that blindfold!

    Of course the ultimate goal is to eventually be conscious enough that you are aware the blindfold exists while also being confident enough that you can strive for and excel well beyond the way-pre-surgery-me you. But, for now, as a first step, just recognize that you do have that blindfold, always.

The slow process of progress

Progress is steady. Progress is slow, but deliberate. That's just how this progress is. It would be nice if progress just happened, immediately - poof - Cancer's gone! It doesn't. Thursday I had an MRI. My Oncologist called later that day to say it all looked good. That way I could avoid a weekend full of worry while waiting for our Monday meeting. Monday I could actually see the image. I could see the slow progress the shrinking tumor encapsulated. 

That's right. There is still tumor in my head. Surgery removed most, and all the surgeons felt comfortable removing. Then an informed group met to discuss a joint recommendation for proceeding. They determined and recommended that cutting out what remained posed too great a threat at that time. They therefore recommended attempting to treat with a host of other tactics - chemo pills, radiation, and a clinical trial drug - before proceeding with more surgery that could potentially devastate. And that's the path I chose.

So I took to an array of other treatments with bi-monthly MRIs to monitor the progress. First large reductions in size, then a reduction of image boldness, and now another smaller reduction. All continuing down a path of less tumor.


It's now been 8 1/2 months or so since my recent surgery. Most days I take 12 pills. Five days in a row a month I take an extra four to five a day. This May I will again have to determine how to proceed with treatment after assessing my situation. 12 months of treatment seems like a long time. It would be nice if my tumor could just be dealt with in the blink of an eye, in a split second. But it can't. It actually takes quite awhile. It's a slow and deliberate process. But so far it's one that steadily achieves progress.

Pale blue dot!

Last Thursday I underwent another MRI. My Dr. called later that day to give me the verbal thumbs up. Just a little indication so that I wouldn't need to wait for entire weekend before definitive information from him at my appointment on Monday.

It's a long story as to why, but basically due to newer policies in the imaging department and my own unique specificities, I can only have MRIs with an anesthesiologist present to observe, ready to swoop into action if necessary. Those MRIs only happen on Thursdays. Since my Dr. doesn't have appointments on Thursdays or Fridays I have to wait until Monday to have the image and his assessment combo.

It's easy to lose track of amidst the minutiae of things, but it's kind of incredible that a big, loud, weird machine can capture images of my brain. (!)(?) Then a doctor can use those images to assess and diagnose a patient! My surgeon could use those images as a road map for surgery! Surgery in my head! Someone knows how to do that! I keep using exclamation marks because I really think it's worthy of exclaim.

A potential reaction to this Cancer (or any Cancer for anyone ever) could be an overall depression and subsequent malaise. But they can take pictures of my Brain to look at! That's very cool stuff. I take chemotherapy PILLS! That's insane. They are pills instead of an IV drip. I take them 5 days in a row a month. Then I go to bed so that they don't cause me too much trouble. I take other pills daily that perform some sort of molecular kung-fu to make my body aware of Cancer cells so my immune system can see and attack them. It's more than incredible that these treatments currently exist.

Oh, did I mention that for surgery, my head was opened, most of the bad stuff removed, then they sewed me back up! And the giant cut in my head healed up! And they thought it would! Because they're good and well practiced at Brain surgery! That's kind of incredible. Actually that's a lot incredible.

ALSO, we were all born! So there's that. We weren't here, then we were. All this stuff happened and then, poof, you're here (ok, that's shortchanging it a bit). You're you. You're now and you're reading this. You're on this little rock thats spinning around in the Universe. The whole giant Universe! Ahhhh!

Ok, now zoomed way back in, last Thursday an MRI took pictures of my Brain. No major changes so the results were good. My next round of chemo pills starts Monday, 12/12. My next MRI happens in about two months. I don't know the date yet but most likely on a Thursday. 

A little indication is nice.

Through years of prior MRIs my wife and I chose various minor celebrations after meeting with my neuro-oncologist. A meal or a movie, though not extremely irregular for most, were slightly out of the ordinary for our often stingy, minimalist lifestyle. This particular day, the time made an impromptu late afternoon lunch appropriate. We'd heard good things about the sandwiches, conveniently for us, at a shop near the Doctor's office. 

After ordering we elected to wait outside of the tiny shop. Heat from both the beginning of LA's extended summer coupled with the time of day, past midday at that point, to make the prospect of the confined space seem unappealing. Instead we chose to increase freedom and air flow. We moved outside to wait. The shop's location positioned us on a busier street near a fancy area. That location equated to generally nicer vehicles and more of them.

Various cars passed both ways along the street providing plenty to watch as we awaited our food. Specifically, we witnessed one car traveling fast, right to left from our perspective. The speeding car slowed ever so slightly to make a right turn down a side street. Of course the car didn't use a blinker! (Who would signal a turn? That might INDICATE some awareness or some concern for any other people.) There are times when quick, seemingly spontaneous and unsuspecting action is best, driving is not one of those times.

At the same moment a few pedestrians began crossing the side street too. The very same street the non-indicating car intended to turn right down. How were these pedestrians to know of the driver's intention to turn without any indication?

So, crossing the street put the walkers squarely in the path, unbeknownst to them, of the speeding car. We were too far and it happened too fast to offer any warning. Left with few options, the car loudly and suddenly screeched to a halt. In doing so it avoided gruesomely colliding with the pedestrians.

However the sudden and immediate stop presented a large 2nd speeding vehicle with its own unforeseen situation. Suddenly the way ahead became blocked as the path instantly changed. Now also left with few options the 2nd vehicle swerved and loudly screeched to a halt itself. Despite the potentially disastrous confluence of 3 separate and distinct worlds, the 1st car, the pedestrians, and the 2nd vehicle, miraculously no disaster! Somehow all parties involved stayed free of harm. From our vantage we could exhale. The situation, a potentially catastrophic situation, resolved without incident...almost.

Any anger or rage from the situation could have been avoided with a decrease in speed, an increase in following distance, or the use of an INDICATOR! But, instead of carrying on, now slower and more carefully, like a decent person, the automobile in back zoomed around the 1st and slammed to a stop emphatically in front of it and perpendicular, blocking the passage forward. The driver of the perpendicular vehicle then dramatically exited and began screaming at the driver of the 1st car as we looked on in stunned silence from across the street. How dare anyone stop so quickly in front of HIM - obviously the most important person to have walked (or driven) on this Earth! Utterly unbelievable!

I thought for sure that we would now witness a road rage induced murder. Yet happily, and somewhat anticlimactically, the situation resolved without violence. The blockading driver, once empty of vitriol, simply returned back to his vehicle and drove off down the original road. With the blockade now gone the turning car simply continued with his turn to the right and disappeared down his side street. Really? Nothing at all from either after so much ado? And neither driver even aware of any other silent witnesses to the insanity.  

Yet the "witnesses" included me. That morning, after years of positive MRIs, I learned that in the hopeful and growing gaps between MRIs, 6 years later, my brain cancer, without indication, absent a signal, had aggressively returned. My neuro-oncologist delivered the difficult news. Then my wife and I met with the brain surgeon to decide, within a few minutes, the best time in the coming days for me to have BRAIN SURGERY AGAIN. Our very unexpectedly long morning extended deep into, and really past, lunch time. A nearby sandwich shop we long desired trying now seemed an ideal location at this un-ideal time.

The drivers across the street had demonstrated the absolute hight of stupidity. Some of the dumbest and most inconsiderate behavior I've ever witnessed. While definitely not needed to highlight it, my morning of experiences only emphasized the drivers' stupidity. On the bright side, the situation revealed much of what I was glad to not-embody... and the usefulness of indications.


Thursday (last week) I had an MRI. Monday (this week) the neuro-oncologist provided quite a relief by approving of what he saw.  That may seem like a small period of time. Just a few days. A minor inconvenience. But, I'm used to less now. Much less. Less than even a few hours. And, not very long ago, an MRI revealed the need for another brain surgery, 6 years after the first ones (the first time in 2010 was technically 2 surgeries a day apart from each other), entirely unexpectedly. So, to me, the span between Thursday and Monday seemed like forever

Ok, "forever" is being a little dramatic, but it did seem long, especially in the midst of the waiting. What I came to realize, in dealing with the mounting anxiety, is that no matter the verdict passed on Monday, my behavior over the weekend preceding would be roughly the same. At least I knew that it probably should be. I knew that no matter what determination I encountered Monday, I "should" act the same. I should value each second like it's the last drop of ice cold lemonade on a blistering hot and muggy day. A day where you sweat just by being in the air. A day where walking out the door feels like running smack into a solid wall of hot. A cold, refreshing drink on that kind of day. Well much easier said than done. I could comfortably ponder it, but putting it into action was something else entirely, and something I did not come close to achieving fully. 

But, I did recognize it. I think that's a significant step (at least I hope it is). I recognized that every day, every thing anyone does could have, and does have, an unknown limited number of moments and days following. Turns out, when you think about it, no one actually has forever.

In my attempt to increase time, not to an unattainable "forever," but at least longer, this is the current situation and plan. I have an MRI about every 2 months or so. This was my second MRI since treatment began. Going into the first I was forewarned of possibly poor images resulting from the scarring and other trauma to the area. But, happily, that MRI showed a significant decrease in the size of the remaining tumor. Still I did not want to jump to conclusions and make some epic pronouncement of status. My thought was that the next MRI could demonstrate a trajectory. Now this second MRI showed a slightly smaller tumor mass than the last. Now this second MRI puts things on a good trajectory. Now this second MRI makes a good conclusion less of a jump. It's a hop toward the good instead. The doctor is unsure if it will get much smaller as time goes on or not. It has become lighter, more wispy, in color so the tumor image may simply define a scarred area. Later MRIs should demonstrate more. My next round of chemotherapy pills begins on October 17. For those with a detailed calendar of my chemo treatments (I'm sure there are lots) that's a week later than expected. The change simply allows for better scheduling. Since my blood work seems to look acceptable, a change in the schedule does not create a cause for concern for my doctor. And if he's good, I'm good - more or less. We already make the trek down to the hospital at least every other week to have blood drawn, and often a lot more. In the scheme of things an annoying car ride does not equate to the be all and end all, but, when a trip to the hospital entails braving the LA traffic, even slightly reducing the number of trips can be hugely impactful. Although they clearly don't, sometimes those trips feel like they take forever!

Recombobulation Area - Update 8/22/16

It's been a bit since I provided the down low, the 411, the info, with what's going on. The short answer: not much unexpected. That's good. 

The longer answer is...longer. Not bad or dramatic, just longer.

The past month and a half or so has been exceptionally busy. We went to 3 weddings, 3 weeks in a row. Julie threw a shower and bachelorette party for her sister (wedding 1) the weekend before wedding 1. Julie stood up in the first two weddings, 1 and 2. The first and last, 1 and 3, were in the midwest. 2 was local. We could drive to 2. We slept in our own bed that night. Those are not normal wedding experiences for us. The weekend before 1 I took my 2nd dose of chemo pills. Balancing the schedule of taking the 17 pills (as opposed to my normal measly 12 daily for the trial) throughout the day, while traveling, by far presented the biggest challenge.

Julie's birthday was the weekend after wedding 3. It was so nice to be home that we mostly relaxed and enjoyed the simple pleasure of actually being home. The night after her birthday, we got some friends together for a small cookout. The weekend was the beginning of exhaling from the prior weeks. As General Mitchell International Airport in Milwaukee would phrase it, it was a chance to recombobulate.

I was scheduled to begin taking my 3rd round of a year of 5-consecutive-day-a-month chemotherapy pills Wed-Sun of Julie's birthday weekend. However, I undergo blood tests weekly for the chemo and the clinical trial. Certain markers need to fall in certain places for me to receive the ok to proceed with chemo. Specifically, the chemo drug diminishes my immune system. It's trial and error to find the correct strength of chemo pills that leave me back in an acceptable zone after a month. The second dose of chemo was much stronger than the first dose. So, in accordance, it reduced my blood platelets further than they could rebound in the given time. But after a week longer they were good. That prompted a slightly less strong 3rd dose of chemotherapy a week later as the search to locate the sweet spot continues.

I also had an MRI a few weeks ago. The MRIs are important (duh) in this case in particular because a neurologist needs the images to actually see the subject of the efforts (and the clinical trial requires them). Usually, so I'm told, the first MRIs look fairly messy when taking this specific clinical trial drug. After surgery and radiation and chemotherapy there is a lot of swelling in there. So, rather than representing some grand proclamation of status, it simply provides the new baseline of the post-surgery picture going forward. Such was the case with me. It's usually not until the second MRI that any progress may be seen. I think that next MRI will happen in October or something. I'll find out more the next time I encounter my Dr.


Update: 6/21/16

Another new update. It’s like things never stay exactly the same. Kinda like…everything else. Sunday I finished my first round of chemo pills. I take them 5 days in a row each month for a year. Turns out I don’t just take the clinical trial drug those five days a month only too. I do, in fact, take them those five days, plus every other day of every month. Someone happened to ask when I received a lot of pills at the doctor’s office. Like enough for the whole year if I only needed to take them 5 days a month for a year. Good thing someone did ask. I would have seriously messed up the plans. Except now I’m taking 12 pills a day, every day! My physician’s assistant mentioned that people generally complain that the hardest part of balancing the chemo with the clinical trial is the scheduling. I take 6 (significantly sized) trial pills on an empty stomach when I wake up, then wait an hour before breakfast. Two hours of no eating after lunch before the second set of 6. The timing hopefully falls around 4pm but seldom in actuality. Again no eating for an hour after. Then, two hours after dinner with no eating I follow with a treat of chemo pills at night before bed. Initially I shrugged and scoffed at the “scheduling” complaint. Turns out “people” were right. Scheduling those is hard. I’m tolerating both well though and hope to continue to do so.

Other than that drastic discovery, a few more things have solidified. I now know for certain that I start radiation  on the 30th. I have five sessions. The 30th of June, 1st July, then (after a break to celebrate with loud noises) the 5th, 6th, and 7th of July. Only 5 sessions, and I think short ones. Cool beans. And I get the wear a special positioning mask made of a hardened plastic mesh that started out soft and hot and was form fit to my face. It’s very similar to the one I wore last time, except faceless, because this is the future!

I also had a few out-patient therapy sessions and I have a few more coming up. OT, PT, and ST (Occupational, Physical, and Speech Therapies if you're not in the know). I see two vision specialists later this week and their reports will help inform my occupational therapists what to concentrate on in the vision/hand-eye-coordination departments. Basically everything is moving forward. Although nothing is particularly fun, it’s all good.

New stuff 6/10/16

I found out a bunch of information earlier in the week, but I thought the week-end(ish) provided a more appropriate time for an update, so, here’s an update:

I start my chemo (Temodar pills) on Wednesday, June, 15th. I’m in the final spot in the clinical trial (at least as it was when I joined, I haven’t kept track of it since so I dunno if they added more slots - cause it doesn't matter!). Taking part in the clinical trial does not change any of my treatment otherwise, it only adds to it. It’s in the second phase which means that every participant receives the drugs, no randomized placebos. And, they've had success with the drug - helping it progress to this phase, a phase also justifying the extreme investment in creation of the drug. Who created the drug? I forget. But next time I see someone who knows maybe I’ll ask, if I remember. Subjects generally tolerate it well, and last time I tolerated the chemo pills well enough, so I hope to tolerate this well too.

So…I take chemo pills 5 days a month, the first time starting on June 15. I will take those on an empty stomach, at night, before bed, so I hopefully sleep through any possible yucky feelings I might have. Those same five days I take something called Zofran, 30 mins before the chemo. I also take Zofran on an empty stomach to hopefully help with any of those possible yucky feelings. And also, on those same five days I take the clinical trial drug twice, again on an empty stomach. In the morning when I wake up and an hour before dinner. Don’t worry, I will get plenty to eat while on chemo, I just need to time it really well on those five days.

Radiation starts on the 15th day of treatment. The first day of treatment is June, 15th. 15 + 15 = 30 (I think, right?). So I should start radiation around the 30th of June. I do know it’s only a short burst. Five days or so I think. They could do it every day, they could do it every other. They usually don’t go over the weekend for longer term radiation like I had last time, but they could this time. That’s something for the radiologist the determine and I will follow the plan of the radiologist when he does. I know it should start around the 30th and it may last around five sessions, but that’s all I know so far. They normally don't radiate the same area a second time but, according to them it's been a long time in brain cancer years (not IRL according to me but...)  and the area in need is super small and they can really focus tightly and etc. It's a small burst and they say it's okay so I say it's okay.

That’s some of the plan going forward. I'm happy that a plan finally exists, or at least I know about it. And it's a lot of 15s. I’ve been assured of the quality of the number 15 so I’m looking forward to these new steps!

Update 6/3/16

This is an update on what’s happening. “Just the facts…” sorta. I figured that since I already control this space it could serve to provide some insight to anyone lacking. Friday, May 20th, I had a brain surgery after a routine scan revealed a, “problem.” They couldn’t remove everything without chancing serious damage and all the surgeons concurred that another more extensive surgery was not preferable. A well scraped out jack’o’lantern is good but not a head, not my head. BUT, more surgery remains an option if alternate methods prove unsuccessful. After a few days in a plush hospital room I moved to a much more modest space on the rehabilitation floor. The aftermath of this surgery left me very similar to pre-this surgery, as opposed to the dramatic changes last time. On Wednesday, June 1, I came home. The pathology of the tumor revealed it as slightly more aggressive than the last, in the same spot but a little smaller (since we caught it much earlier). With 4 months between scans it went from non-existent to substantial enough for surgery. But because it failed to grow much between Monday (the reveal) and surgery (which removed some) there isn’t an extreme hurry. This Monday, June 7, I will meet with my neuro-oncologist to lay out the plan going forward. It likely includes some sort of chemo pills (same as before, still the prime mode of treatment and statistically this tumor responds better) and targeted radiation. Additionally I may qualify for a clinical study of a “check-point inhibitor” that Cedars (my hospital, Cedars Sinai) is running. The trial does nothing to change my other treatment plans, just adds some more meetings and labs. Basically I’m home now, figuring out what pills to take when (I only have two) and waiting to learn the next step on Monday.