Overall things are good!

On June 11 I had an MRI. Due to Hospital scheduling changes… on a Tuesday. Weird and awesome. That meant I was able to see the doctor the next day. On June 12 I met with my neuro-oncologist. He liked the things he saw, basically. It’s difficult to approximate the size of what’s left. As is the case with most tumors, it is irregular and non-visible cells can regrow and reemerge from seemingly nowhere (as I well know).

There are a few “micro-hemorrhages” that are not uncommon with one of the drugs I’m on. They just require continued monitoring. They are currently not a big problem, we just want to ensure they stay that way. To that end, my next MRI will be in mid-August. I take my next chemo pills in early July.

I don’t have a ton of apprehension with upcoming treatments because I don’t feel bad (other than the occasional headache. Also, I guess my balance isn’t real great, my coordination leaves a lot to be desired, and I’m fatigued at times). But other than those things… It doesn’t necessarily seem like I’m going to jump from this state to professional athletics but I don’t foresee a ton of jumping from me in general. Considering my physical limitations that’s not a preferred method of motion. Something I can shuffle to, or maybe slowly walk to, may offer a better alternative. My neuro-oncologist would probably point out here that a lot of my cerebellum, a part of the brain that, among other things, controls coordination (coordinates coordination!) has been ravaged by tumors, surgeries, radiation, and chemo. Overall though, especially when adjusting to the situation, I don’t feel too bad.

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PS Yes, there’s a post script to this post because that’s the kind of time line we’re working with. Shortly after I drafted this post I started getting headaches. Then those headaches persisted another day. The fact of headaches didn’t concern me as much as dipping in the back of my head in the same area that bulged out when the shunt went in (concave now and convex then). I contacted the doctor’s office but haven’t heard back yet. My concerns became less immediate as my headache started to decrease.

Here is my completely untrained medical opinion: I think the shunt is turned up too high. Naturally a body filters and drains cerebral spinal fluid (CSF). When the normal path was blocked an Endoscopic Third Ventriculostomy, an ETV, was attempted to create an alternative and natural path for the flow of the CSF. When the ETV didn’t work a shunt was put in place. Now that treatments have begun to shrink the tumor the normal passage, the ETV, and the shunt can all drain CSF. They seem to be draining too much CSF. If my doctor agrees when I eventually see him I’ll update. Until then, besides the occasional headache, overall things are good.


Update 7/1/19: A law degree does not a medical degree make (a jd does not equal an md)! According to the surgeon this area has been heavily trafficked so some of the flesh wearing down does not overly cause concern (at least not a lot more concern than brain cancer in general). The shunt does not suck in CSF like a vacuum cleaner. No matter the setting, the shunt just provides a path for the CSF to travel. Therefore, it doesn’t cause the creation of more CSF. Since I don’t have headaches regularly, and the headache I did shortly went away, the area will continue to get monitored going forward. Mostly the advice, as usual, except when it’s not, is to be a patient patient.

Life is a Balancing Act

We’re approaching (/in) the summer season which, among other things, means traveling for us. And traveling means seeing people we don’t see often. It makes sense to me that they’d have some questions for us, and me, regarding my health. I welcome that. Obviously, since I share here, I don’t mind sharing some.

But here’s the thing, and it’s kinda a big thing - what’s happening to me is not that different than what’s happening to you, meaning none of us knows for sure what will befall them in the future. The next minute, the next hour, the next day.

So, while it’s good, and possibly necessary, for a health update from me, we are wherever we are for other reasons. Those are important too.

Maybe this can answer some of your questions or provide motivation for some new ones. In November I had surgery. Again (it’s like Forrest Gump meeting the President). During the surgery the surgeon attempted to build an ETV, Endoscopic Third Ventriculostomy. An ETV is meant to provide a natural drainage route for Cerebral Spinal Fluid (CSF). If something blocks normal drainage the fluid could back-up in the head and cause something called hydrocephalus. Hydrocephalus provided a sign of a problem before my very first surgery. But that was almost a decade ago - back to now. With this surgery, the surgeon removed all that could be removed safely - considering I still wanted to walk and talk after. At first I seemed to recover well, but soon the area around the scar began to swell. Due to hydrocephalus, the back of my head started to look like a filled water balloon. I also lost a lot of weight. Leading up to surgery we were concerned that I would not have the necessary stores my body would need. But tumors have never worried much about my concerns.

I grew very nauseas after surgery too. Not great, especially considering the situation. To help alleviate the issues I underwent a number of small procedures called Lumbar Punctures, more familiarly known as Spinal Taps. “Spinal Taps” sounds intense but they were far from it (maybe the machine needed to be at 11?). Instead it felt like they were aerating my back the way you would aerate a lawn or field. The taps actually felt good and alleviated some of the pressure from the lack of drainage. Each time there was an immediate improvement in my speech, movement, and overall comfort. Unfortunately though the length of the benefit from each spinal tap grew shorter and shorter. I was underweight, the hydrocephalus was building up, and I was starting to mispercieve some parts of reality. By the time Christmas rolled around I was a mess.

Soon after Christmas a shunt was surgically implanted in my head. A shunt is a small device that provides an unobstructed path for CSF to drain into my abdominal cavity. It’s some combination of plastic and metal (I think, I didn’t have a chance to examine one before it was put inside me) that can be adjusted from the outside, with magnets, in a futuristic way. After awhile the shunt was adjusted to drain more CSF. Then less. Trial and error with my head.

Once I was mostly healed from surgery, and the shunt implantation, I could begin other treatments. We agreed on a two part treatment, like a 1, 2 combo punch in a video game. A chemo pill, called CCNU, taken every 6 weeks and an antibody infusion, called Avastin (a-VAST-in), dripped in every other week. A combo that, in conjunction, hopefully fatally wounds the cancer. The Avastin stops the growth of new blood vessels which tumors create at a high rate. Ideally then the chemo tags in to take it out. The first infusion of Avastin, for some unclear reason, eased my nausea. It’s difficult to impress just what a difference this made. I could now eat somewhat normally again! This was huge! Clarity is not a strong suit of cancer anyway.

As my situation advanced (es), the importance of each MRI advanced (es) in accordance. My first post-shunt MRI happened at the very end of January. This scan would mostly just provide a baseline going forward. The tumor had grown a little (as was expected) since surgery but not too much. Because CCNU takes awhile to work the next MRI would provide a clearer picture regarding the effectiveness of the treatments. The next MRI, the last I’ve had, showed some tumor shrinking. We’re on the right path it seems.

So, to summarize, here’s the cliff’s notes of what the last few months involved:

  • Brain Surgery (another)

  • Multiple spinal taps

  • Shunt

  • Chemo

    • CCNU - Pills every 6 weeks or so

  • Anti-body

    • Avastin Infusion - 2 week intervals

I’m more than happy to discuss the state of things to whomever is interested whenever, wherever. In fact if you know even a little about my goings on and don’t at least inquire that would seem weird to me. I don’t derive any personal benefit from avoiding the subject. The subject is a big part of my life. At the same time, we are all people living lives. Everything for everyone else doesn’t suddenly come to a halt when I have an issue. So, if we cross paths, feel free to address any nagging questions about my health or inquire about my (and our) well being, and then move on. How are you? What’s happening in your world? Finding the right balance is just a part of a life. And, if we’re talking to each other, we both are alive.

Why not?

I’m pretty sure I’ve been overly dismissive in the past about the difficulty of what’s going on. Thing is, if I concentrate on the difficult, that difficult ends up coloring my entire experience. There can be good things that can end up happening. As Russel Willson (the current Seahawks qb and former Wisconsin Badger) would say, “Why not me?” When someone tells an unbelievable and inspiring story about themselves, they had to make it through those unbelievable circumstances. The difficult, far fetched, part is an essential part of the overall story. For me, the difficult, far fetched part, is a brain tumor on my cerebellum.

We are stuck trying to find a way to combat that. I had my most recent craniotomy on November 19. I came home on the 21st. The surgeon removed as much tumor as was safely possible. He also did a procedure called an “ETV” to create a new path for cerebral spinal fluid to continue to flow if it somehow gets blocked again by tumor growth - which is what happened this time. The excess of spinal fluid is also known as hydrocephelus, or “water on the brain”.

After surgery I was very debilitated. My incision site began to swell and leak fluid. I began a regimen of medication to slow down the spinal fluid production so my body could catch up and drain it naturally. But as more time passed, my condition still continued to worsen. I had a few spinal taps in another attempt to drain fluid, short of surgery. The taps provided immediate relief to some of my symptoms, but wore off after a few days. It was becoming clear that the ETV was not working as designed. By Christmas Day, it was obvious that I needed to take the next step. I went to the ER, was admitted to the hospital that night, and had a shunt surgically implanted on December 27th.

A shunt has been a consideration since the very beginning in 2011, however, it wasn’t deemed necessary until now. It is a device implanted in my head that connects to a long skinny catheter which travels under my skin and empties into my abdominal cavity, where my body can safely absorb the excess spinal fluid. There was significant improvement in many areas after the placement of the shunt. My cognition and mobility got much better and my headaches subsided. One thing that did not improve is my nausea, which remains the case. I had an MRI on January 31st. My tumor right now is back to about 50% of where it was pre-surgery. That growth may be the current cause of my nausea.

Right now I’m taking a chemo called CCNU. It’s a pill that I take every six weeks. It usually takes two rounds to kick in. I’ve done one round. I started a drip called Avastin today which is administered every two weeks. Avastin prevents the creation of new blood vessels which will slow the tumor growth so the CCNU has more time to work.

Things look difficult, and are difficult. But we’ve been lucky to have many visitors to help and an outpouring of support from friends and family. These are my current unbelievable circumstances that I will continue to fight. Because, why not?

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.

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.

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 6/3/16

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.