A (_space_) part!

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Oh how quickly we/I forget. Lately my right eye has been occasionally drifting further right - out of alignment with my left eye. When it happens it impairs my already impaired coordination and depth perception and balance. I don’t know why it happens. I do know that remembering back to my first hospital stay, at the end of 2010 and early 2011, helps realign my perspective. Or, in terms someone traveling through Milwaukee’s airport might understand, it helps recombobulate. After my initial surgeries in 2010 (2) I stayed in the ICU for almost two weeks to avoid a shunt placement, like I have now. From the ICU I spent a few days in the “regular” hospital before moving to the “rehab” floor. In rehab I worked on a number of things, going from basically bed ridden and not walking to walking down the street to a grocery store to prepare a meal. Once I came home ( just in time to see the Packers win the Super Bowl) I had home health care, where therapists came to me. A little while later I went to out-patient rehab where I went to the therapists. Physical, occupational, and speech on the rehab floor through out-patient therapy (for me occupational therapy concentrated on vision). The point, which is very helpful to remember when recombobulating, is that it took over a year for me to learn how to operate in my altered state (Green Bay didn’t win the next Super Bowl but our engagement occupied plenty of time).

While all the dates don’t align nicely, the broader point is that “recovery” took a long time. Some patience is important. Just like I couldn’t immediately, and never really could, jump into my pre-Cancer self after my initial surgeries, I can’t jump into a time before now, now. As I know firsthand “recovery” may take more than a few days, or weeks, or months. Merely operating “acceptably” could easily take over a year.

Determining acceptability is as unique as the individual making the determination. And part of that determination requires determining exactly what is “acceptable.” Although the point at which you, me, the patient, determines acceptability does not bind them forever to that one point in time. It’s a part of a process that can/may, bend, slowly (depending on the patients patience) towards recovery. That’s important to think about when my eye starts to drift, or if I’m sleepy, or I have a headache… Accepting that the issue, whatever the issue, is a part (A space Part: belonging to; NOT apart: separate from) of the entire process of living. Ultimately that’s my goal! Continue to live. Continue to be a part and not apart. Remembering the past, remembering some of the difficulties, helps make the overall process more palatable. It helps me recombobulate to a more accepting mindset. And a year may not even be long enough, but at least it extends the mental timeframe I had. It helps me accept the way things are now.

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Except, of course, if something feels awry - then further investigation and instance is necessary. I realize that’s not extraordinarily helpful - “be patient when you should and insistent when you should.” How does one know when they “should” be one way or another (good question me)? One doesn’t (poor answer me). But, since this advice is mostly for me, you just have to feel it. That’s the wisdom years of experience have brought, “you just have to feel it.” Maybe Malcolm Gladwell will write the next Blink about brain cancer. Ironically my eye drifting right instigates some blinking.

In service of my continuance as a part of the living clan, I will likely take my sixth set of CCNU pills on Wednesday night, October 9th. The 9th (earlier) is also the date of my next Avastin infusion. My next MRI will likely happen in mid to late-October. A hard date has not been set yet.

Stable

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“Stable.” That was my NO’s (neuro-oncologist) assessment of my last MRI. I had the MRI on Thursday, August 22, and met with him the next Wednesday, August 28. “Stable.” From what I gather, that means things look the same. Almost exactly the same. The cancer is not growing. My NO was almost vehement about how great an MRI it was. That’s fine. I’ll accept that perspective. As was the case before, there are a few spots that we will continue to monitor but they are nothing overly concerning at this point. At the next appointment, September 11, an appointment that won’t be dominated by distracting MRI pictures, we’ll get more information about exactly what “stable” means.


I mean, I know the dictionary definition of “stable” in the English Language - steady, firm, fixed. Or it could be a place to keep a horse. However, specifically in this context, applied to me, what does it mean? Should I try a little more, should a try a lot more, should I try just to maintain the status quo, should I try to improve drastically? Where is a good target for me to aim at? My NO seemed very pleased with the results so that’s very good! From his experience, which I don’t share, “stable” is a very good thing it seems. Also, the chemo brings my platelets and white blood cell counts down. It makes me fatigued. Not narcoleptic tired but lacking energy. Sapped energy might make new additions more difficult to implement. My energy level makes setting low sights more acceptable. It’s like I constantly have a bad hypnotist around. “You’re getting sleepy - except you’re just fatigued and unmotivated, you’re not actually tired.” That lethargy, partially caused by the low blood counts, means that my next round of chemo, just like my last, will be delayed. The delay gives my blood counts the chance to rebound before the chemo knocks them down again. My next round of chemo would be round 6. There will either be 6 or 8 rounds total. I’ll find out more at my appointment on September 11. I also plan to find out more about what “stable” means in my specific context - although I’m pretty sure it doesn’t involve a horse.

Ha ha! Plans.

Last year we planned on going to a wedding in France this summer. What do they say… something about making plans and God laughs? Whether you’re an atheist or religious zealot doesn’t matter for this to apply. Whatever you believe, it’s just Murphy’s Law applied to plans. Last year, soon after we considered traveling to France, I had surgery. That sort of threw a wrench in things. Very soon after that surgery we attended two domestic weddings - the further, 3 timezones away, so basically nothing compared to the time changes a trip to France entails. I needed to be extra vigilant regarding rest for the two weddings. While the distances to the two were minimal so was the amount of time after brain surgery.

Soon after the weddings, November 2018, an MRI showed regrowth. The immunotherapy drug I was taking failed to keep the tumor at bay and I had ANOTHER brain surgery. As I recovered from my latest surgery, the incision in the back of my head started to bulge. The back of my head resembled a filled water balloon. However, my NO (Nuero-Oncologist) was away on vacation. We valued his input prior to any actions so we delayed as long as possible with spinal taps. I had three. They 1) were not as bad as the name seems to imply to the unfamiliar; and 2) had diminishing returns. The first helped for a few days, the last, despite the removal of a large amount of troublesome liquid, only helped for a few hours. It became obvious after the third we could no longer wait. Something needed to reduce the liquid building in my head. A constant spinal tap was not an available option, and even if it were it wouldn’t be very attractive. So, on December 27, 2018, almost exactly eight years to the day of my very first brain surgery, I had a shunt implanted in my head. The shunt created a path for cerebral spinal fluid to drain out of my skull and into a safe place in my abdominal cavity where my body could take care of it. I spent a few days after Christmas in the hospital. God, a deity, the universe, a 6 year old alien running a simulation, had a good, long laugh at my plans. A laugh that lasted from before Thanksgiving to after Christmas. Ha, ha!

After the shunt procedure I still felt relatively sick, but the surgical wound no longer bulged out. I was nauseas and weak and tired and unsteady but I needed the shunt incisions to heal before I could begin my regular cancer treatments. The cancer treatments might (probably would) make healing from the shunt insertion very difficult (or impossible). The cancer treatments involved an infusion every other week of an antibody, called Avastin, to prevent the growth of new blood vessels the cancer needs. The Avastin is combined with a strong oral chemo pill taken every six weeks, sometimes longer depending on blood work, called CCNU. Ideally the Avastin prevents the cancer from growing and the CCNU kills the bad stuff.

Treatments led to the unexpected. After my first Avastin treatment my nausea went away. That isn’t necessarily what Avastin is meant to do but I wasn’t complaining about this side effect, especially since I had been trying to gain some healthy weight and not-eating-much made that very difficult. My second MRI after the start of treatment showed some progress from the first. I seemed to be traveling on a good path. Suddenly a trip to France, a trip that seemed impossible a few months prior, seemed a possibility again. Treatments, once started, were not necessarily that time sensitive. That meant a trip wouldn’t be completely dictated by a treatment schedule. My NO gave me the go ahead and we made loose plans for France. It was hard for me to even say - I am so used to the rug getting pulled out from under me - I am so used to making God laugh - that I almost expect plans to get wrecked. But in late July we did go to France. It was great. In fact, to say it was just great is an understatement.

I support all trips to France. I’ve enjoyed all of our trips to Europe quite a bit. We’ve been three times, each trip somewhere new. Now I’m back on American soil. Back to the usual. Back to treatments. I have an Avastin treatment coming up. Before the Avastin treatment I’ll do some blood work and that will help inform when i’m going to take chemo again. My next MRI should be sometime in early September. I’m not trying to make too many plans though. While I can occasionally be funny I don’t want to make God laugh too hard, it’s not healthy - at least for me.

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.

I predict starting infusions...

Finally... finally... I have a date to start infusions. It's Wednesday, August 15. I will have about an hour to an hour and a half infusion after some blood work every two to three weeks, indefinitely. The drug takes about three months, or so, to show results.

It took so long to schedule the infusion because there were some hold ups with the drug maker, who generously decided to provide the drug I'm taking for off label use, and the pharmacy at the hospital's cancer center. But that's all resolved now and infusions are finally starting. "Off label" is a medical term of art for a use that differs from the use the drug is approved for. In this case, the drug I will be taking (Imfinzi) has been approved by the FDA for bladder cancer and lung cancer. I don't have bladder cancer or lung cancer (I think). However this drug also shows promise for brain cancer (especially when a certain genetic expression is present). I do have brain cancer so I'll be taking the drug for brain cancer. And markers in the genetic make-up of the tumor tissue in my head indicate this drug may be especially effective for me. I guess we'll see!

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Of course there is no real way to know how well a treatment will work. No one knows anything for sure. They might know something that helped them. Or they might know something that worked well for someone else. But it doesn't necessarily mean that what they experienced or heard will be helpful to me. I don't think some special cure exists that applies across the board for every cancer or even every brain cancer. If there were I'm pretty sure someone I know would be aware of it.

Every single type of cancer is different. Even types of a type of cancer are different. That makes some sense because every person is at least a little different than the next too. So why wouldn't a congregation of cells from that one individual body be at least a little different than a similar congregation in another individual who is, on the whole, a little different than the next? Even shoes, which are in sizes, don't fit exactly perfect for each individual. But shoe sizes provide a close prediction or approximation of what might be the case.

In fact, even my own experiences with my own cancer differ greatly. The first time I had surgery I was in the hospital for about a month and a half (that's fairly LONG). The next time I had surgery I was in the hospital for less than two weeks (still long, but much shorter). After this recent surgery I was in the hospital for two days (now that's kind of short, especially considering brain surgery).  All completely different. All for the same person, with the tumor in roughly the same spot. Additionally, in the past, how I felt during the day, and then initially how I felt when I lay down at night, combined with approval from medical professionals, dictated when I could remove the props and sleep laying down normally. Flat. I thought (mistakenly) after a few weeks I would be able to remove the incline when sleeping. But that was not the case, even though I generally felt fine AND multiple medical professionals had sanctioned it. This time laying flat at night left me with a pounding headache the next day. It felt like laying down flat at night reduced the natural draining. This was happening more than a month after my surgery. So even in a controlled group of one, just me, it's hard to make a clear prediction.

That's why I'm going with this immunotherapy infusion route. Because there are no sure things (except death and taxes). There is no definite answer that solves any and all problems. There is no silver bullet. There are only predictions and approximations. This immunotherapy is generally well received and shows promise with the genetic markers my tumor's tissue presents. AND my neuro-oncologist wants to try it - he's a smart guy, he's well versed in brain cancer, and he has known me/treated me for almost 8 years. Since there is no silver bullet, no one-size-fits-all, no definites, I think the genetic markers coupled with the support of my neuro-oncologist make this drug the right route for me, personally, to take. Again, we shall start to see its level of effectiveness on Wednesday.

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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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.

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."

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.