Best coast! Update 7/6/16

I just finished watching the HBO miniseries “The Pacific.” I know, it's been around awhile. I actually began watching it a long time ago, but after the first episode never continued. "Hey, I'm busy." The same excuse of most people. And that's a legitimate excuse. There are probably way better things to commit to than a TV show. But I found a respite of time recently and I chose to apply that time to "The Pacific." "The Pacific" is the WWII, fighting the Japanese in the Pacific theater, analog to “Band of Brother’s,” which followed U.S. troops fighting the Nazis in the Atlantic theater. "Band of Brothers" was also produced by Tom Hanks and Steven Spielberg and was very good. Obviously "The Pacific" contains many lessons about selflessness and sacrifice and heroism and loss and meaning and humanity… But two somewhat similar lessons seemed particularly appropriate to my current experiences:

First, when the soldiers fought in one large battle, as a viewer I thought, ‘Whew, they made it through. Thank goodness. Now they can go home!’ But then they didn’t go home. That wasn't all for them. They just went on to the next battle. They continued along the path and one significant event didn’t mean they were suddenly done with everything. If anything, experience continually made them better soldiers.

Second, the actors. In this one particular mini-series the actors portrayed their one role. One character of many throughout the actor's acting career. They had taken on other roles in the past, they will continue to take on other roles in the future. Like with many things, when watching I was immediately struck by what I might have seen this or that actor in before. One main actor was the young boy in “Jurassic Park.” Another that came in later now plays the main character in one of my favorite shows, “Mr. Robot” (he's also in "Short-Term 12" BTW). After "The Pacific" ended it was on to the next thing for the actor. Each piece helps to build the wider kaleidoscope of an image and story for them. Just one role isn’t the be all and end all of everything.

So, as I lay on the rock hard table top (loosely a “bed”) preparing to begin my short, five session, stint of radiation I thought about those two things (sure those are probably not “normal” thoughts but I’m not very “normal”). I already underwent surgery. I had already begun my first set of monthly chemo pills. I took my clinical trial drug daily. And I had already done most of it before. BUT, the lesson of the soldiers continuing to soldier on (pun intended but I also think that’s where the term originates so it’s not as much of a pun as an appropriate use) to the next battle helped to make this newest front a lot more digestible. Both the actors, and the soldiers they portrayed, and I traveled a journey. A journey not defined by one single battle, one single role, one single treatment. Rather it’s the combination of everything that results in the whole.

Thursday, June 30th, I began radiation treatments. I have five total. It’s much more focused and concentrated than the last time I underwent radiation. I had radiation on June 30, July 1, July 5, today (July 6), and I finish on July 7 (tomorrow). I got blood drawn today just to monitor things. Then I get it drawn again next week before I meet with my oncologist and hopefully begin the next round of chemo pills. If I do they will start on July 13 and end on July 17.

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.