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.

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!

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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.

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.