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.

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.

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.

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!

 

All we can know is?

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

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

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

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

The show must go on!

"Continuing on with its 33rd season, you know it, you love it (maybe), the Jason Decent show!"

As continues to be the case, I had my last MRI two weeks ago on...a...Thursday. It may be self evident, but it's generally unwise to make assumptions, so I'll just tell you, MRIs are important. They are important because a Dr. cannot just look at your brain like a bruise on your arm or a cut on your finger. The MRIs provide the clearest image of the actual situation for both Dr. and patient.

But, in addition to this particular MRI detailing the results of the past two months, this MRI also detailed the results of the last year of treatments. A week before the MRI I finished my 12th and final round chemotherapy pills. The MRI would show the status of my head after radiation, after a year of chemotherapy pill rounds, and after daily clinical trial pills.

Early Wednesday morning I went in to see the positive picture. The afternoon of the MRI my Dr. had called to notify me it looked good, but on Wednesday I could take my own good look at the image. The remaining tumor had shrunk, again. I can't do the exact math but the tumor shrunk by a lot in the course of a year. By comparison it used to be larger. Now it's not. I dunno, 1/16th the size of before maybe? Simplified: Less brain cancer = good. 

Right now chemotherapy is not considered an effective tool for continuation. I will, however, continue taking the daily clinical trial drug. It produces few side-effects. At least in combination the trial drug seemed to be helping, and now we can determine its effectiveness alone - hopefully it continues to rate as very effective.

My next MRI, in mid-July probably, will detail the current state of things. Until then there's not much more to do other than keep taking my daily pills (and try to be somewhat healthy...). While I'm assured there are plenty of options if the clinical trial pills are no longer effective when on their own, I would just as soon have them be super effective and continue to diminish or even eliminate the tumor. But it's not until the next MRI that we'll actually be able to see. Talk about a cliffhanger... Tune in next time! I will.