Covid craziness and Consonance

pictoral proof that we celebrated Easter.

Consonance. Aligning with things that are the same. Agreement. in this specific case, things that help. I was hopeful that my surgery would net some significant changes, but it seems like there are only slight changes. Surgery slight significant. It’s both steps forward and back. I can probably get further in the long run. In the short term though there are some deficits. I’m still weak. I’m still very tired. But I didn’t have to stay long at the hospital at all. I was only there one night. The crazy COVID situation probably made them as eager for me to leave as I was eager to leave. It seems like things were aligned.
I’m not trying to be critical of any care I would receive at the hospital. But my private nurse, my wife, fortunately and unfortunately has plenty of experience caring for me, specifically, after brain surgery. In essence, I was probably better off at home under her watchful eye, and the hospital was probably better off dedicating space and resources to other people in need. “Lucky” me but also lucky me.

I have a follow up coming up in a few days, Wednesday, April 15, with my neuro-surgeon and my neuro-oncologist. Not only will they check on the state of things, AKA the state of my incision, but they may have at least a preliminary plan for how to proceed. A few weeks ago there were three areas of concern. Surgery took care of the accessible one. The material collected in the surgery should assist in formulating a plan for the remaining spots. Possibly some combination of radiation and immunotherapy. Chemo has already ravaged my bone marrow, so I’m told. After my short visit with the drs. we’ll retreat back into our crazy covid inspired quarantine with a new plan.

Quarantine got you down? Well...

Is the quarantine getting you down? I found a way around it, you really have to dislike the quarantine though. Friday, probably at least through the weekend, I’ll be at the hospital. I’m having brain surgery Friday morning. Julie will be there too, at least for 24 hrs after the surgery. After that I don’t know? A plea is being made for her to stay longer. Her staying longer really does benefit all the parties involved. She understands me best and would be there for more consistent monitoring. If she wore a mask and stayed with me she wouldn’t be introducing anything new to the environment. But we also understand the need to draw some hard lines in hard times. In this unprecedented situation, it might make the most sense to stick to the hardline. If that’s the case then we will deal with that too. That’s what we do, we deal with things. If no other choice exists then there is no one to argue with. Disagreement will just lead to further upset and detachment. Since we’re all in this together (we are, we have no choice) we don’t benefit from furthering upset and detachment. The decision I would make personally doesn’t necessarily factor into the bigger picture at the moment. Just in case Julie has to leave, I got a new phone. My current device can be a bit wonky with reception sometimes. That’s a hardship I might endure, but Julie, rightfully, pointed out that if she has to leave and my phone doesn’t work well, that’s a rough double whammy. While I have no doubt it’s a hardship we could endure (we’ve endured many) it’s not a necessary one, all things considered. The new phone should come today, April 1st, 2020, so hopefully we can make it work before I go in for surgery.

A man, a plan, a canal, Panama.

The Panama Canal back in the day. A man, a plan, a canal, Panama- is a palindrome (the same forward as back like radar or race car or go hang a salami I’m a lasagna hog).

Friday I had an MRI. My neuro-surgeon was around so he reviewed the images. Monday I have a phone-call with my neuro-oncologist to discuss more. From the images it looks like there are 3 areas of concern: 1) behind my left ear in the cerebellum, 2) in the cavity of the original tumor site, and 3) in the front right part of my brain. The solution we settled on, when looking at the calendar, is a surgery on Friday, April 3. It can still be adjusted, it can still be cancelled, but that’s the plan right now. Surgery on the 3rd to remove the concerning area behind my left ear.

This isn’t a great time to hang out at the hospital (is there ever?). But the reasoning is there is a lot of unknown and this is a way to resolve some of the unknown. All the tumors are likely the same because that’s a thing in the brain - tumor - world which I am, unfortunately, a part of. (I wish I were apart instead.) By removing one spot, that spot no longer needs to be dealt with by other means. Surgery provides matter that can be tested to see what therapies might be the most effective on the remaining spots that aren’t as accessible for surgery. This particular spot also houses some seeming liquid that is good to get out of there. Liquid, like blood or something, has the potential to spread baby stem cells of the tumor to other areas, so getting that out as soon as possible seems wise.

That’s also why surgery now - or soon. To do it right requires some prep work, and there’s my discussion with my neuro-onncologist Monday. And it provides a chance to gather relevant questions from family and friends. And it provides me a chance to breathe. And my neuro-surgeon could do it then (mostly that).

Amidst the Covid craziness (trademark) the hospital has some restrictions on the surgery and such. The biggest is that I’ll only be allowed one visitor (spoiler Julie’s going to be that visitor). Even when I come home, after a few days, we will probably maintain our quarantine - I’ll be even more susceptible after surgery. So no visitors but I’m open to well wishes and good thoughts. Things will probably only get crazier in the coming week, and weeks, so the sooner I have surgery the better. I don’t have any inside info. That’s just an educated guess.

next month

This Wednesday, 2/26/2020, my Doctors revealed what they thought of my last MRI. What they think is very important because generally what they think is what I think. What they saw were a few spots. The spots might be bleeding, might be tumor. The spots were not nice enough to explain what they were.

Chemo brought my platelets way, way down. That can make it hard for bleeding to stop. Now, after some time and two transfusions, my platelets seem to be rebounding as my white blood cell counts are dropping. I’m told this is not an irregular pattern for the chemo I was on (CCNU). Speaking of chemo, I’m done with this chemo. It’s suggested to do between 6 and 8 rounds. I did 7.

Instead of an MRI every two months, I’m going to have an MRI next month to compare and contrast to this one. Hopefully the spots look like they were bleeding that got filtered out. In the near future, I won’t be doing Avastin infusions either. Avastin is not a chemo. Actually it’s an antibody that prevents the formation of new blood vessels. While that’s a good thing for fighting cancer (tumors make new blood vessels at a high rate), that’s bad if you want stop bleeding. If you want both, like me, you’re between a rock and a hard place.

There has been a lot to contrast with in the last decade. I was in the hospital for over a month in 2010-11, I’ve had five brain surgeries, and just recently, I was very sick. I couldn’t really eat. Crackers, smoothies, and bone broth were my only sustenance because that was all I could keep down…kind of keep down. Despite such a varied and full diet, I lost a lot of weight and a lot of strength. I didn’t have much energy.

In the next month that’s my goal. Strength and weight. Oh, and to have the spots have been bleeding since filtered out by my body. I think I have more control over my strength and weight though. I’m slowly increasing the amount I’m able to eat, the amount I can stretch, and the amount I exercise - I move pretty slowly in general so a slow increase really presents the only option. Then, in a month, I’ll have another MRI that hopefully sheds some light on what’s going on.

IDK?

Way way back. Last month, last year, last decade, all the way back on December 6th, I had an MRI. A stable MRI according to the Doctor (NO, Nuero-Oncologist). He called to let me know that things looked good before we left town that night for the weekend. If he had not called I wouldn’t get information from him until our next scheduled meeting on December 18th. While such delay would ramp up the drama it would also ramp up the anxiety. The phone call was the pin that popped the balloon so that there wouldn’t be a risk of a pressure build up over the delay.

On December 18th we saw the images. Yup. The Doctor was right. They looked pretty much the same as the previous MRI.

At the appointment, after showing us the stable images, the Doctor brought up the possibility of another type of chemo. Here’s where things stand: I’m on a pill every six weeks called CCNU. A person usually does 6-8 rounds of CCNU. Because the CCNU severely reduces my platelets, its period of administration has been repeatedly extended. I could stop where I’m at, do one more round of CCNU, or do two more rounds of CCNU. OR I could possibly do six months of an intravenous drug called carboplatin. I just realized that, while explaining, it’s very complicated. Explaining well might even require yarn and photos and a blank wall and tape. I can’t avoid dealing with the situation but I’ll save you. Basically I would either keep doing the same thing for a cycle or two more of CCNU or start six months or so of intravenous carboplatin. Either way I would continue receiving Avastin infusions every other week.

While I like the freedom in my decision, a little more guidance might be helpful. Although I’m sure I know more than most, I don’t know enough for my liking about chemo or carboplatin. It’s hard to make decisions based on what seems like incomplete information…or, I should say, it’s harder for me to make a decision when I don’t know the correct answer or have a crystal ball. I guess the best anyone can do is collect the most relevant information as a basis. Since I don’t own a crystal ball (or a future Almanac - although that still might not help in this situation) I’m in the information collecting stage. My next appointment with the Doctor should be January 8th. Although it’s already scheduled I’ve learned through experience not to count my chickens. I’m in the process of building up my armada right now. That way I’ll have adequate ammunition when that appointment happens. (However, I very much like my NO. He’s not the enemy, he’s an ally. My questions aren’t necessarily bullets. That might make this the wrong analogy. I guess cancer is the enemy. But as long as the scans continue to be stable it’s fine too.) On Wednesday, January 8, my NO will possibly provide me better ammunition. Coming soon on the heels of that appointment is another one or two appointments followed by another MRI…also not scheduled yet. Maybe what I’ve already taken is enough to again induce stability, maybe not? I don’t know.

A positive frame

Wednesday, 10/23, my neuro-oncolgist (NO) reviewed my MRI from the Thursday before. Compared to my last few MRIs things looked stable. That’s good. I did bloodwork and my counts were high enough, finally, to take chemo (it’s been over a month longer than the normal gap between rounds but that’s alright because it’s strong stuff). I took my chemo pills that night, after some anti-nausea medication. Good! My bi-weekly (every two weeks, not twice in one week) infusion of Avastin occurred after my NO reviewed my MRI. Very good! A busy medical day that started with the poke of a blood draw and ended with some chemo pills.

Given positive MRI results and the okay that I’ve been waiting for to take chemo, I should be ecstatic. I am. I’m very happy. But I’m also tired and unmotivated. My right eye occasionally drifts farther right, separating from the left. My strength and balance are both objectively subpar… At the same time, things could be much worse, and they have been even in my limited experience of me, much less for others. But the fact that worse exists doesn’t make feelings less real. It doesn’t negate. It does help change perspective though. It may help with the adjustment of the frame which may, in turn, help a little with my faltering energy after chemo. I also plan to restart formal PT soon. That should help change the frame too.

Doing things helps a person feel like they’re doing things - which in the here and now is all there is to do in response anyway. Doing the “right” thing isn’t possible because that would require the ability to see the future. Unfortunately, or maybe fortunately, that’s an ability I don’t have. All I can actually do are things that are here and now - at least in the here and now. If some future plans depend on here and now, then what I do here and now may impact those future plans too. But here and now, things are good! That’s the frame I choose to see them through.

A (_space_) part!

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.

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.

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?

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!

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.

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.

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.

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).

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.

All we can know is?

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.