Too

Whew. I've been trying to do too much, too fast. Just too aggressive. In my post-op meeting with my surgeon he medically okayed sleeping normally - instead of elevating my head. He wanted me to do what's comfortable and let comfort be my guide. My north-star. So that night, Wednesday night, I laid flatter than I had the past few nights. But, early in the morning my head felt cloudy or weird. Like I was under water. Like there was too much pressure. I elevated my head a bit and felt much better. Once I elevated it felt like some of that water was draining away. 

Earlier on Wednesday I had met with both my neuro-surgeon and my neuro-oncologist to discuss the surgery and the post-op MRI and the pathology of what was removed during the surgery. What they informed me is that with the cyst some tumor tissue was removed too. 

The tumor tissue was hard to categorize, but the tumor in 2016 was a glioblastoma so this is called a glioblastoma too. What is weird about this tissue is that it displays a genetic marker, PD-L1 or PDL-1 (I've seen it written both ways), that most glioblastomas don't show. There is an immunotherapy infusion drug, called Imfinzi, that works well on this specific genetic presentation. The drug is usually used for bladder and lung cancers but has shown success on brain cancer too. I am now finished with my old trial drug (good bye 12 pills a day, good bye intrusive eating schedule! You were acceptable as long as you provided a benefit but now that time has passed and you are more than free to go! I'm not at all sad to see those things go if it doesn't translate well to writing).

We got the ball rolling on the immunotherapy immediately. I had a meeting already scheduled with my neuro-oncologist this Wednesday. That will stand and now function as the second part of the recent immunotherapy meeting.

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The span from one appointment to the next gives an opportunity to digest everything. We went to one wedding, outside of Pittsburgh, last weekend, to another, outside of Seattle, this coming weekend. Thursday morning I had at-home physical therapy. Thursday night we went to a show put on by the studio Julie manages at. Then, later that night, we went home to pack so that we could get up super early and fly to Pennsylvania early the next morning. 

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The weddings (and the week between them) allow (/already started to allow) me the chance to metorphorically elevate my head. Like an intentional sabbatical from social media or a silent retreat. While I'm away I can't do much in the way of cancer treatments (I'm not remotely near home and most of the people professionally working on my case have the weekends off) and while I'm in SoCal (or not in SoCal) I need to find another new balance, doing things more slowly and more measured and more deliberately. During the week's time I need to recalibrate - again (or as the airport in Milwaukee says "recombobulate"). In the time away I will get to be with friends, celebrate, and relax. This recombobulation means accepting the ever changing reality and then making the most of what is available rather than forcing things. An opportunity to "hold on loosely" and not "squeeze too tightly." Hopefully at the end of the week I'm rejuvenated and refreshed. Reinvigorated and ready to show a little more patience as a patient. A slower, more measured, more deliberate, approach. And an approach more prepared for this infusion therapy, whenever it starts, too.

Long waiting game

Little spoiler...brain surgery stinks. A lot. It's not fun. I kinda forgot but then was reminded after I woke up in a lot of pain. I think it's kinda like it is for women forgetting the pain of child birth so they'll go through child birth again. If you remembered what it was really like you wouldn't be so for it. But given the alternative, with brain surgery I'll still take the surgery. After quite a day, a long long day (one that involved waiting super long for an MRI that was required before room placement after a surgery) we got to travel to my spacious, private, room so I could actually see some of the of the family that had made the trip. (Other than my wife I couldn't see anyone else in recovery - after getting to the hospital at 5:15 am we probably didn't get into the room until after 6:30 pm, even though I was in recovery around noon.) But a successful brain surgery covers up a lot of blemishes.

That night was pretty awful. The incision wounds were still fresh and the staff needed to wake me up every two hours to check vitals and "provide" a neurological test. The next day and night were much better. Apparently I healed quickly enough that they felt confident I could head out the door on Sunday. I had the bandages removed in the morning and had reduced my pain meds to just a little. All that was really necessary was to continue tapering down the necessary post-surgery steroid after getting home. And I had some emergency pain relief medication with me  too - since there can be some pain associated with brain surgery.

By Sunday afternoon I was home. I was tooling around our apartment and got to sleep in my own bed. Amazing! Ok, well actually it wasn't that great, but comparatively it was much better than the hospital. Every day since surgery I have definitely physically improved a little. Today I had a home health care therapy intake and tomorrow I will have the evaluation. Next Tuesday, 7/17, I will have a post-operative MRI and next Wednesday, 7/18, I will have a post-operative evaluation with my neuro-surgeon (and probably a short meeting with my neuro-oncologist too). I don't know when I'll get the pathology results from what was removed in the surgery. They could come back as early as tomorrow but, depending on how time sensitive the information is the Drs may wait until next Wednesday to discuss them with me. At this point though, I'm used to waiting.

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What is it?

You would think this whole brain surgery thing would get less complex the more times you do it, but not necessarily. I met with my doctors on Monday afternoon and we decided that I would have surgery next Friday morning, July 6. The surgery will be for removal and exploration.

Thursday, July 5, I will have an MRI in the AM where they will position little sticky markers around my head to serve as guides for the surgery. I'll spend the rest of that day like a Catholic on Ash Wednesday - walking around with brain surgery stickers instead of Palm frond ashes. After that point no more showering for a few days, probably 3 or 4 or 5. At least through the weekend. Once I get home I'll have awhile where I need to sleep upright and I won't be able to lift anything heavy. 

When it comes to the brain a simple biopsy is not possible. There's a cyst in the footprint of my prior surgery. The cyst has two indeterminate spots on it. The spots may be new tumor growth but they may also be dead tumor cells from radiation. The only way to know for sure is to take it out and look at it. The only way to take it out and look at it is to have a brain surgery.

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But the passage leading to the spot should be a little less complicated to travel than previously. I guess that sometimes "the road less traveled" is not preferable. And yet, as previously mentioned, the lead up to brain surgery is still relatively complicated. Then again, it is brain surgery, so maybe that is how it should be? Maybe it should be given adequate preparation time. Time to contact others and make some plans and otherwise do more prep work. I even got my hair cut (the medical personnel didn't necessarily want me to, but the prospect of not washing my hair for awhile made long hair seem much less desirable). Another benefit of the longer time before the surgery is there is less concern if there happened to be some accident or something haircutting, but there wasn't - so it's a moot point.

Now that much of the more complex issues are dealt with, we are free to "relax" (as much as possible) and go about our "normal" business over the upcoming weekend and the holiday.

In the past my vision and coordination have been impacted by surgeries. That will likely be the case again. Time to bust out the old shower stool and walking stick and clear-lens-taped glasses! I've gotten plenty of use out of all my brain tumor utensils (one might contend, and I am "one," a little too much use). But given that I don't necessarily have a choice - because I don't  (well maybe there are choices with how to deal but not the growth's existence itself) - as sage minds often refrain, "it is what it is." And what it "is" is that I happen to have some tools that can be useful after brain surgery. So useful, in fact, that I foresee a use.

Of course what I foresee won't necessarily be the case. That's a giant aspect of the entire experience, the lack of control. Accepting that one can only influence so much. Then trying to determine what is influenceable. But otherwise accepting that "it is what it is." And whatever pathology returns on what's removed in the surgery is something else out of my control. It too, is what it is.

A cyst is different than assist

I met with my Doctor Wednesday afternoon regarding my MRI from last Thursday. That MRI involved two extra tests that made it twice as long, and believe me I know what a long MRI is. Anyway, the two extra tests were motivated by two spots that seemed to appear the MRI before. The tests created graphs of the areas highlighted by the chemical contrast. Areas that are or were cancerous. The tests measured blood flow and metabolism. Active tumor would show a lot of activity while dead cells, the result of radiation, necrosis, would show little activity. The graphs that resulted did not resemble what would be expected stereotypically by living tumor, in fact the opposite. The results were inconclusive, or so I'm told since I didn't necessarily understand it exactly. Overall though, it's probably not a bad thing. While there are not clearly not-tumors there are also not tumors, and not tumors is good.

Also it was determined that an area in some of the former tumor space is a cyst. The two uncertain spots that are not clearly tumor (or not not tumor) are on the top and bottom of the cyst. How do they know it's a cyst? - I don't know. We asked, actually Julie asked cause she literally has a more solid head on her shoulders, if the cyst was a new development. The Doctor said that it wasn't. She also asked if there was danger of it bursting. He, again, said there wasn't.

We usually watch Westworld on HBO on Sundays. I then usually listen to a recap and review and speculation podcast (the recappables westworld) on the Ringer podcast network. It goes up Sunday night but I often listen to it Monday (except they didn't post it this Sunday because of the Holiday which put a serious cramp in my style). Tuesday they post another, shorter, podcast after they've taken some time to review larger group reaction and speculation. That's the same thing I think visits with my Doctor need. Another one. A chance to digest and develop new, relevant questions. Especially this time since the presence of a cyst (?) is entirely new. Luckily the Doctor is very responsive to emails. While the drive to the Hospital for another visit would be doable, we did two a month before for the trial, it's not ideal. Plus the Doctor has other important brain cancer business to attend to. So, I think it's important to keep our interactions somewhat minimal (but also enjoyable for us both - to the degree that's possible given the reason). That puts the onus on me when I do send an email for the email to be concise and organized.

I'm now having monitoring MRIs every month. My next MRI will be June 21 and my next meeting with my Doctor is June 25. At that meeting we will discuss the latest MRI and the current situation. That recency bias will make some of the questions I develop now obsolete. It's like Apple is updating my head monthly with each MRI. The 25th will provide the setting and leave a month for me to organize my next round of questions ahead of their irrelevance. Right now it seems many of those currrent questions will now revolve around this cyst.

Out with the old, in with the... old.

My last MRI showed two dots on my cerebellum, just below where my tumor was. The spots may either be new tumor or necrosis (dead tissue from radiation, which isn’t completely likely but also fits). On May 24th I’ll have another MRI - one month earlier than planned. That MRI will have two extra tests that will help my doctor determine the make-up of the spots. One month will give the spots time to possibly grow or stay the same, and I already have a meeting with my doctor on May 30 (and the clinical trial I'm currently on consists of month long intervals). IF the spots are tumor tissue there’s the possibility of 6 months of low dose daily chemo, additional surgery, or new alternative drugs, or some combination of them. But, that will all get determined after the next MRI.

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In some ways not a ton is different. I'm still waiting for MRI results to help inform a decision going forward. That, and the ability of MRIs to create an image of your brain is CRAZY. That hasn't changed either. In other ways a lot has changed. What has changed is what is being focused on. Changes, in and of themselves, are concerning. Also, this upcoming MRI is earlier by a month so that's different too. But, like they say, "the more things change the more they stay the same" (I don't know who "they" are but apparently whoever "they" are "they" like to say that). Hopefully "they" know what they're talking about and things continue to stay the same despite the changes.

Until the next MRI I plan to continue with "normal" activity more or less. Normal activity includes traveling in a couple weeks to Pennsylvania and hopefully some good coffees. With the new perspective that a reframe of the same old issues provides, what's old is new again!

All things considered... good? Yes, good.

The main takeaway from my MRI on Thursday, March 1st, was a good looking MRI. My doctor reaffirmed his Friday phone assessment in person on Monday. The image looked identical. A tiny, unassuming, unchanged dot. The longer unchanged the better. It's been unchanged for months which hopefully indicates the absence of activity, both now and in the future (unless that activity is complete disappearance, in which case I would accept that activity).

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The more in the weeds situation remains more...complicated. Complicated in part because of a continued allergic reaction to an essential element of MRIs (which in and of themselves are essential). But also complicated because of symptoms that may or may not be related to the negative reaction experienced from those MRIs. It's just another layer of uncertainty, so par for the cancer course. Wait and see. Don't overreact. Easy to say and council. Very hard to do and put into practice.

So, as long as things don't dramatically and unexpectedly change, that difficult mantra of "wait and see" provides the plan. "Wait and see" and "don't overreact." Continue to work on the S L O W process of physical improvements to strength and balance and coordination while simultaneously trying to balance MY cancer experience with MY semi-regular life experience. And then, in two more months, another opportunity to again reassess the situation and, almost assuredly, an opportunity for even more uncertainty. Until then, at least I have this latest MRI image.

A weekend walk for balance

Every cancer diagnosis involves two parts. There's the larger, MACRO, research into causes and treatments etc. Then there's also the personal, micro level, that involves how one particular person integrates that diagnosis, and the realities that diagnosis entails, into his or her specific life. We are not just charts and graphs, yet our individual lives are improved by better charts and graphs. It's a balance. The diagnosed person reflects the overlap of where those two circles of concern meet. Both those spheres require and demand attention to attain a balance.

Last year we participated in a run/walk sponsored by my hospital (https://www.wizathon.com/heroesofhoperace/index.php). It raised MACRO level funds for research the hospital specifically conducted.

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Incredibly, despite the Cedar's team name and best efforts, we were unable to terminate all the tumors so they decided to have the annual event again. Unfortunately we were away when it took place this year so we couldn't lend a foot. But, fortunately, our misfortune was rectified when we discovered that another organization I frequent, one that concentrates more on micro level realities, the other side of the cancer coin, is hosting a run/walk of its own to raise funding (https://wespark.org/event/8th-annual-10k-5k-run-walk-kids-fun-run/). Since we will be present for this one, and it's conveniently right down the street, we're happy to provide some extra feet on the ground. (I forgot to mention that the event is also right next to the farmer's market we attend every Sunday. Seriously, brain cancer is just SO convenient!) If you feel inspired to lend your own feet you can come with us, if you're just inspired to help out weSpark you can do that too, or if you're just happy to know about it, now you know about it.

Update:

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We went, we saw, we walked. There's photographic evidence!

Thumbs up!

Thursday, January 4, 2018, I had a positive MRI! That's the sound byte. If you take anything from my retelling it's that: Thursday I had an MRI and that MRI looked good.

Yesterday, Monday, January 8, we met with my neuro-oncologist and and he showed us the images, the Magnetic Resonance Images, that look like X-Rays of my brain. The images look almost exactly the same as the last images from November. There is still one highlighted dot. It hasn't changed which increases the likelihood that it's scar tissue or some other inactive tumor tissue.

But there in lies the rub. The hard truth to the image is that while it's very good that things essentially look the same, "the same" entails a small bit of undefined tissue in my head that at the very, very best was formerly cancerous. ALSO, I had been completely visibly cancer free for about 5 years, from 2011 to 2016. Then, in the absence of any indication, a new brain tumor grew in the old site. The result was the most recent treatments, including this recent MRI. So I partially underwent this MRI because of cancer's uncertainty.

In addition to the uncertainty the images provide, I also physically felt uncertain. Thursday morning I had an MRI. My Dr. viewed the results and relayed the good news later that day. Saturday I didn't feel well. My stomach felt uneasy which led directly to me feeling uneasy. Monday I felt fine. Did I feel weird on Saturday because the cancerous tissue inside my head began to grow AGAIN? Or, did I feel weird because I felt weird and sometimes people feel weird? It's uncertain.

All I can do is know that anything I experienced negatively in the few months leading up to my last MRI did not ultimately result in a negative. I can apply that knowledge to any weird feeling now. But there's no ignoring the fact that I unexpectedly produced a tumor in 2016. That constant tension leads to constant uncertainty. Any image provides a small amount of sureness that things looked good at that one moment in time. But it does not completely erase the past or my recollection of it.

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So yes, my latest MRI looked good. Things hadn't really changed. For the next MRI I will have the knowledge that in terms of my cancer nothing was bad leading up to this last MRI. But, because I experience a constant reality of brain cancer there isn't the same space to exhale and breathe personally as there might be when reading a periodic update from a distance. Unfortunately the news doesn't help alleviate the uncertainty going forward, but fortunately there's a forward to go. Keep going that way!

 

It's all "good."

On Thursday a big, whirring, LOUD, machine, in a cold room took brain pictures for me. My nuero-oncolgist wasn't working that day. We spoke over the phone Friday instead. He told me, after viewing the images, everything looked good. What did "good" mean? I was not sure. But the "good" news overwhelmed my curiosity and was enough to satiate my wondering wandering mind for the weekend.

Monday morning I spoke to a nurse in the office. He informed me, according to the report, there were no issues. That didn't say a lot about the state of what was there, just what wasn't. Nothing "bad." I will have a normally scheduled visit with my doctor on Monday, November 11. Then I will finally get to talk to him face to face and actually see the brain pictures. 

But here's the thing, Friday all I needed to know was that everything was "good." That was enough to ease my mind for the weekend. Metaphorically we all have "good" MRIs and also "bad" MRIs. It's a certainty that something "bad" will occur to everyone at some point. That's just an inherent part of being a person.

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The certainty of "bad" meaning the certainty of unpleasantness and unpleasantness being one factor in the human condition. I'm human so I'm guaranteed at least some unpleasantness.

Right now I don't necessarily know what "good" means except that "good" is not "bad." In a few days I'll learn more about "good." Hopefully though, regardless of how "good" is further defined and poked and prodded and parsed I'll continue roughly the same as I did Friday when I only knew that it's "good."

Scoreboard. Scoreboard.

The imaging department at my hospital (or the hospital I attend regularly, I don't own it) schedules an anesthesiologist on Thursdays. The imaging department also requires that I have an anesthesiologist on hand for my MRIs. Why they require that is an involved story that wasn’t always the case but now it is. Regardless of why, they do require it. And currently, combating my cancer involves regular MRIs. SO, my last MRI, without necessarily accounting for any other demands of my schedule, was last Thursday. The results were good. Yup, good. Fine. I’m measured in my response because there’s still a bit of tumor (even though it’s a small bit now) in my head. Any tumor in your head, no matter the size, is a little disconcerting. Also, I’m painfully aware that even the absence of visible cancer does not mean no cancer forever. 

I have MRIs every two months, more or less. As a tool that allows the doctors to assess the situation in my head, MRIs provide pivotal information. Yet, as I conveyed earlier, a conclusion drawn from that information is not definitive. The first weekend of NFL football is an appropriate metaphor. Fans are ready to bungee jump, skydive, to a conclusion upon every game result. Suddenly they are seemingly flooded with information after complete deprivation.  Following starving for some knowledge, any morsel of substance seems like a fantastic meal. But that’s dangerous. The juxtaposition of anything with none seems like a ton, however, it’s only one data point. By itself it just sits there, directionless. Two points might help show a direction. Three might start to show a trend. One is a lonely number. 

BUT, without an MRI there is not even a first dot. Without One no Two. That's how numbers and counting work. No foundation, no possibility for a connection, and never the possibility of a trend. Going into the second week of the NFL schedule, a previously undefeated team (1-0) could suddenly boast a .500 record with a loss. Similarly, a previously entirely defeated team (0-1) could suddenly boast a .500 record with a win. The definition of One partially depends on Two.

A contrarian (I know some) might correctly point out that I have multiple past MRIs to point to - to help establish a trend. But those past MRIs assuredly incorporate the effects of other treatments as well - in fact this one even may. With that lack of exactitude, the further away from other treatments the more the results can be attributed to the trial drug. In fact, we will never be able to establish a definite direct causation. The most we can hope to do is find a correlation. Since I’m not willing to be, or ask others to be, the control group I am, in essence, perpetually playing the first game of the season. Sure, it’s very good to have a data point that provides some bearing in the fog (hopefully a lighthouse that prevents the ship from horrendously crashing into the jagged rocks!). But having one point alone is not necessarily enough to triangulate a position. I’ll just have to settle for 1-0. It's much better than the other way around.

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All we can know is?

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I won't bury the lead. The lead is that yesterday my MRI was good. That's the general take away - all good.

Now, for those so inclined, more detail. The small amount of tumor shrunk even a little bit smaller. There is some matter there but there is less of it. Is the matter healing tissue? Is the matter active tumor? Is it still responding to past treatments? Is it now responding to the trial drug? How much is the trial drug actually responsible for the current state of things? Without any trial would the current results still exist? Lots of questions but no definitive answers. All I do is provide data that translates to some dot on a chart. But blah, blah, blah, that's going to instigate a philosophical discussion about statistics and averages and my insistence on how finding a balance between raw data and raw life is necessary. 

Anyway, the point is that we can't know anything for certain, we can only weigh the evidence. Right now there are many questions with the only absolute certainty being that I'm here. At least I think I am (wait, so? Ahhh).

Right, back from that tangent. Good news. Good scan. The doctor was happy. I am happy. I'm continuing with the trial drug. 12 pills each day. 6 in the morning, 6 at night. About a 3 hour window of no eating around them. Usually 11 to 12 hours between doses. Then I'll repeat the same MRI process in a couple months, probably mid-September. Maybe a little earlier even to be back on schedule. Maybe a little later depending on the doctor's judgement. I don't know. Like I said before, lots and lots of questions. 

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.

Progress.jpg

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.

Forever

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.