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.

Try to be here, some

The past few days my social media feeds were inundated with pictures of people at Notre Dame Cathedral. Way more people than I thought had been there. Often these pictures were accompanied by a nostalgic recap of what it was like or what it meant. Seeing this surprise outpouring led me to hope that while they took the pictures - or maybe just after - the people that took the pictures were able to take in the place. That the words that they wrote after the fire were present in their minds before the fire too. That’s my hope at least, PRESENCE.

Wednesday I met with my Doctor about my MRI the previous Thursday. Scheduling issues on both sides resulted in almost a week wait. That’s a long time but luckily I had some distractions. Some podcasts to catch up on, hanging out with friends, and the Game of Thrones premiere! They all helped reduce the increased scanxiety from the extra long wait.

Wednesday the doctor gave me the news that overall the MRI looked very positive. The tumor reduced in size some. We are on the right track. The only issue might be the shunt draining too much (so it got turned down because that’s possible!).

This is very good news. My usual response would be to move on immediately. Take no time to savor and enjoy - but i’m not here just to check off items on a list, I don’t just have a picture at Notre Dame. I have the experience, my experience. An experience that, depending on perspective, may or may not lead to better or worse but will always lead to something different.

My intent (especially right now since I feel alright) is to savor and enjoy a little. Take a moment, slow down, and breathe. More commas in life, To be a little more present. Not just checking an item off a list, not just taking a picture, but being there. Slowing down. Pausing. Breathing. Taking it all in, or as much as possible, because inevitably things will be different.

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?

Monday Monday...

A few months ago I may have been, ever so slightly, a tiny bit critical of brain surgery. I apologize. If I implied any negativity toward the true wonder of operating on the brain, I’m sorry. Please don’t be angry with me brain surgery. Don’t take out any anger on me. Not that there’s ever a good time for a brain surgery to take out anger, but it’s specifically not a good time when you’re about to have brain surgery - which I am. Again? Yes, again. Monday, 11/19/18, I’m having surgery for multiple reasons.

First of all, I am experiencing something called hydrocephalus, or “water on the brain.” It’s something I experienced a lot of the very first time I had surgery. Spinal fluid filters through the brain and spine. Back during my first brain surgery (which was great because brain surgery is ALWAYS great) a collection bag was surgically attached to my head to collect fluid. Fluid that my brain was not taking care of. for a couple of weeks post surgery. Since the fluid had to go somewhere, and my brain couldn’t handle it, the fluid went into the bag. Slowly the color of the fluid in the bag lightened as my head began filtering the fluid on its own. One goal of this surgery is to reinstigate the draining of fluid that the mass is currently blocking. The mass is like food waste clogging a drain.

Besides opening up a passage for fluid drainage, the surgery aims to remove whatever seemingly cancerous material can be seen and removed without causing complications. Removing that material means that material can be both analyzed to see what treatments may work best and leave less for said treatments to work on.

Finally, there is a cyst. It’s grown to the point where something must happen. The cyst must be drained. Brain surgery provides access to the cyst so it makes sense to take care of that issue too. These three things, especially in conjunction, prompt the necessity of surgery. A kind and benevolent surgery. A surgery that I am beyond grateful to have. A surgery that’s more than worth the commensurate phyiscal pain involved. According to me…right now…and on Monday.

Not RUSHing to judgement

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“If you choose not to decide you still have made a choice.” So I guess that’s the “decision,” and therefore the “choice,” after my last MRI. Wait until the next MRI. The latest MRI showed that the tumor grew. It may have either just gotten bigger OR it may be inflamed from being attacked by my immune system. That’s ideally the way the drug, Imfinzi, operates - this tumor strongly genetically expresses a gene that Imfinzi often works well to negate thus making cancer cells suddenly appear to the immune system. (Imfinzi is like peeking a little when you’re “it” in “hide and seek” and Cancer went to hide upstairs which everyone else understood to be off limits.) So, after the latest MRI, the conclusion is, the drug is either working perfectly or not at all. As I was informed, its about a 50/50 chance that the larger size is just inflammation caused by the drug working. The next MRI will help decide. If the next MRI shows even more growth, the drug is probably not working. BUT, if the tumor shrinks, or even stays the same, then the drug probably caused the inflammation seen on this MRI and may work.

In about a month, mid November, I’ll have another MRI. While my last MRI was quick and short the next will be much longer. My next MRI will be with contrast which already means slightly longer. But I’m also having spectroscopy and perfusion tests which almost doubles the time needed. Those additional tests measure blood flow and metabolism. It simply means the Doctor receives more information. More information so that he, and therefore I, don’t RUSH to judgement. I’m not exactly sure when my next MRI will take place, probably at some point on November 15th (because it’s a Thursday). My next infusion, #6, will be on October 29th.

Just another manic Monday

A lot is going on in the coming days from my me-centric point of view. Our wedding anniversary (6 years!), the Brewers (in the playoffs and with home field advantage), the Badgers, the Brewers (again), the farmer’s market, the Packers, birthdays, an MRI, a doctor’s appointment, an infusion…

Wait, an MRI? Yes, an MRI. My MRI has been scheduled for Monday morning. My 5th infusion happens a few hours later so my MRI is happening about as late in the fourth cycle of infusions as possible. Monday, October 15, consists of my MRI (without the contrast that I’m mildly allergic to), blood work, a doctor appointment (to look at the MRI I just had among other things), and my 5th infusion of Imfinzi. Things kickoff in the morning and should be done by noon. We have to wake up and get on the road very early (at least there’s less traffic then). It’s a lot but it consolidates all the business I have at the hospital into 1 trip. That makes the “a lot” worth it. I think my wife (of 6 years by then) would agree.

...so I'm told...

If you’ve been following my “situation” somewhat you might be thinking that it’s been awhile since I’ve had an MRI. If you were thinking that, you’d be correct. My last MRI was a post-op MRI in July. That MRI was to assess the state of things at that time. But I haven’t had a scan since and I haven’t had one since I’ve started this infused treatment. Generally, so I’m told, which could proceed pretty much everything I report, this treatment…so i’m told…doesn’t really begin to show effectiveness until after the 4th infusion. About two months. About eight weeks. Sometimes up until the 4th infusion, after only 3, the situation on the scan may even look worse than before. If the cancer advances a little before the treatment can take hold a bad scan after 3 infusions could provoke an action that may neither be advisable nor necessary after 4 infusions.

Well, that’s a bit of a conundrum. A bit of a rock and a hard place. I received the choice between a scan after 3 infusions or a scan after 4. I chose… after… 4. From what I’m told, a somewhat worse looking scan might almost be expected after 3 infusions. In that case we would probably just proceed as planned anyway. In the case of improvement, though somewhat unexpected so soon, we would just proceed as planned. Really, the only situation in which we might deviate from the plan is if something catastrophic appeared on the MRI. Rather than attempting a scan early I based the need for a scan on how I feel.

More or less I feel fine. I mean that’s all relative to the situation and a matter of perspective, but more or less I feel fine. It seems like my reactions to the infused medication mirror my reactions to chemotherapy, even though the infusion is immunotherapy. Issues with weight and appetite, strength, coordination, and some fatigue. Most noticeably it causes nausea later into eating. That would not be overly concerning except that I’m kinda a lot scrawny to begin with and my muscle mass has gone down significantly since my last surgery.

I’m working on addressing some of the things though. I work out a good amount. I try to eat smaller meals more often. Unfortunately surgary things taste really good but sugar likely feeds cancer so I try to minimize sugar. I’m also trying some CBD to help with eating. CBD is an abbreviation for Cannabidiol. Two parts of Marijuana are THC and CBD. (It’s especially important to read “or so I’m told” into anything that deals with CBD or Marijuana.) The THC is what gets a person “high.” CBD is non-psychoactive. (Now I’m way out of my depth.) While a small amount of THC might be necessary to help the CBD work, it’s generally not enough to get someone “high.” The fact that the body has an endocannabinoid system is pretty convincing, I think, that CBD is entirely natural. Another unfortunate thing (it seems like there is quite a lot that’s unfortunate about cancer) is that it seems like an unnecessary and closed minded stigma has resulted in a lack of knowledge around something with the potential to be so helpful. “But marijuana is mind altering,” some could argue. SO ARE MOST MEDICINES I would counter! AND CBD DOESN’T EVEN HAVE A MIND ALTERING COMPONENT I would add! ARGH!

I digress. Breathe. Calm. Hopefully at my next doctor’s appointment my hulking physique has put on some weight. My next appointment and infusion are both October 1st. That infusion is my 4th so I will probably have an MRI later that week or sometime the next. Sometime before my 5th infusion. That’s when the effects of the treatment start to become apparent…or so i’m told.

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.

Too

Whew. I've been trying to do too much, too fast. Just too aggressive. In my post-op meeting with my surgeon he medically okayed sleeping normally - instead of elevating my head. He wanted me to do what's comfortable and let comfort be my guide. My north-star. So that night, Wednesday night, I laid flatter than I had the past few nights. But, early in the morning my head felt cloudy or weird. Like I was under water. Like there was too much pressure. I elevated my head a bit and felt much better. Once I elevated it felt like some of that water was draining away. 

Earlier on Wednesday I had met with both my neuro-surgeon and my neuro-oncologist to discuss the surgery and the post-op MRI and the pathology of what was removed during the surgery. What they informed me is that with the cyst some tumor tissue was removed too. 

The tumor tissue was hard to categorize, but the tumor in 2016 was a glioblastoma so this is called a glioblastoma too. What is weird about this tissue is that it displays a genetic marker, PD-L1 or PDL-1 (I've seen it written both ways), that most glioblastomas don't show. There is an immunotherapy infusion drug, called Imfinzi, that works well on this specific genetic presentation. The drug is usually used for bladder and lung cancers but has shown success on brain cancer too. I am now finished with my old trial drug (good bye 12 pills a day, good bye intrusive eating schedule! You were acceptable as long as you provided a benefit but now that time has passed and you are more than free to go! I'm not at all sad to see those things go if it doesn't translate well to writing).

We got the ball rolling on the immunotherapy immediately. I had a meeting already scheduled with my neuro-oncologist this Wednesday. That will stand and now function as the second part of the recent immunotherapy meeting.

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The span from one appointment to the next gives an opportunity to digest everything. We went to one wedding, outside of Pittsburgh, last weekend, to another, outside of Seattle, this coming weekend. Thursday morning I had at-home physical therapy. Thursday night we went to a show put on by the studio Julie manages at. Then, later that night, we went home to pack so that we could get up super early and fly to Pennsylvania early the next morning. 

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The weddings (and the week between them) allow (/already started to allow) me the chance to metorphorically elevate my head. Like an intentional sabbatical from social media or a silent retreat. While I'm away I can't do much in the way of cancer treatments (I'm not remotely near home and most of the people professionally working on my case have the weekends off) and while I'm in SoCal (or not in SoCal) I need to find another new balance, doing things more slowly and more measured and more deliberately. During the week's time I need to recalibrate - again (or as the airport in Milwaukee says "recombobulate"). In the time away I will get to be with friends, celebrate, and relax. This recombobulation means accepting the ever changing reality and then making the most of what is available rather than forcing things. An opportunity to "hold on loosely" and not "squeeze too tightly." Hopefully at the end of the week I'm rejuvenated and refreshed. Reinvigorated and ready to show a little more patience as a patient. A slower, more measured, more deliberate, approach. And an approach more prepared for this infusion therapy, whenever it starts, too.

Long waiting game

Little spoiler...brain surgery stinks. A lot. It's not fun. I kinda forgot but then was reminded after I woke up in a lot of pain. I think it's kinda like it is for women forgetting the pain of child birth so they'll go through child birth again. If you remembered what it was really like you wouldn't be so for it. But given the alternative, with brain surgery I'll still take the surgery. After quite a day, a long long day (one that involved waiting super long for an MRI that was required before room placement after a surgery) we got to travel to my spacious, private, room so I could actually see some of the of the family that had made the trip. (Other than my wife I couldn't see anyone else in recovery - after getting to the hospital at 5:15 am we probably didn't get into the room until after 6:30 pm, even though I was in recovery around noon.) But a successful brain surgery covers up a lot of blemishes.

That night was pretty awful. The incision wounds were still fresh and the staff needed to wake me up every two hours to check vitals and "provide" a neurological test. The next day and night were much better. Apparently I healed quickly enough that they felt confident I could head out the door on Sunday. I had the bandages removed in the morning and had reduced my pain meds to just a little. All that was really necessary was to continue tapering down the necessary post-surgery steroid after getting home. And I had some emergency pain relief medication with me  too - since there can be some pain associated with brain surgery.

By Sunday afternoon I was home. I was tooling around our apartment and got to sleep in my own bed. Amazing! Ok, well actually it wasn't that great, but comparatively it was much better than the hospital. Every day since surgery I have definitely physically improved a little. Today I had a home health care therapy intake and tomorrow I will have the evaluation. Next Tuesday, 7/17, I will have a post-operative MRI and next Wednesday, 7/18, I will have a post-operative evaluation with my neuro-surgeon (and probably a short meeting with my neuro-oncologist too). I don't know when I'll get the pathology results from what was removed in the surgery. They could come back as early as tomorrow but, depending on how time sensitive the information is the Drs may wait until next Wednesday to discuss them with me. At this point though, I'm used to waiting.

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What is it?

You would think this whole brain surgery thing would get less complex the more times you do it, but not necessarily. I met with my doctors on Monday afternoon and we decided that I would have surgery next Friday morning, July 6. The surgery will be for removal and exploration.

Thursday, July 5, I will have an MRI in the AM where they will position little sticky markers around my head to serve as guides for the surgery. I'll spend the rest of that day like a Catholic on Ash Wednesday - walking around with brain surgery stickers instead of Palm frond ashes. After that point no more showering for a few days, probably 3 or 4 or 5. At least through the weekend. Once I get home I'll have awhile where I need to sleep upright and I won't be able to lift anything heavy. 

When it comes to the brain a simple biopsy is not possible. There's a cyst in the footprint of my prior surgery. The cyst has two indeterminate spots on it. The spots may be new tumor growth but they may also be dead tumor cells from radiation. The only way to know for sure is to take it out and look at it. The only way to take it out and look at it is to have a brain surgery.

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But the passage leading to the spot should be a little less complicated to travel than previously. I guess that sometimes "the road less traveled" is not preferable. And yet, as previously mentioned, the lead up to brain surgery is still relatively complicated. Then again, it is brain surgery, so maybe that is how it should be? Maybe it should be given adequate preparation time. Time to contact others and make some plans and otherwise do more prep work. I even got my hair cut (the medical personnel didn't necessarily want me to, but the prospect of not washing my hair for awhile made long hair seem much less desirable). Another benefit of the longer time before the surgery is there is less concern if there happened to be some accident or something haircutting, but there wasn't - so it's a moot point.

Now that much of the more complex issues are dealt with, we are free to "relax" (as much as possible) and go about our "normal" business over the upcoming weekend and the holiday.

In the past my vision and coordination have been impacted by surgeries. That will likely be the case again. Time to bust out the old shower stool and walking stick and clear-lens-taped glasses! I've gotten plenty of use out of all my brain tumor utensils (one might contend, and I am "one," a little too much use). But given that I don't necessarily have a choice - because I don't  (well maybe there are choices with how to deal but not the growth's existence itself) - as sage minds often refrain, "it is what it is." And what it "is" is that I happen to have some tools that can be useful after brain surgery. So useful, in fact, that I foresee a use.

Of course what I foresee won't necessarily be the case. That's a giant aspect of the entire experience, the lack of control. Accepting that one can only influence so much. Then trying to determine what is influenceable. But otherwise accepting that "it is what it is." And whatever pathology returns on what's removed in the surgery is something else out of my control. It too, is what it is.

A cyst is different than assist

I met with my Doctor Wednesday afternoon regarding my MRI from last Thursday. That MRI involved two extra tests that made it twice as long, and believe me I know what a long MRI is. Anyway, the two extra tests were motivated by two spots that seemed to appear the MRI before. The tests created graphs of the areas highlighted by the chemical contrast. Areas that are or were cancerous. The tests measured blood flow and metabolism. Active tumor would show a lot of activity while dead cells, the result of radiation, necrosis, would show little activity. The graphs that resulted did not resemble what would be expected stereotypically by living tumor, in fact the opposite. The results were inconclusive, or so I'm told since I didn't necessarily understand it exactly. Overall though, it's probably not a bad thing. While there are not clearly not-tumors there are also not tumors, and not tumors is good.

Also it was determined that an area in some of the former tumor space is a cyst. The two uncertain spots that are not clearly tumor (or not not tumor) are on the top and bottom of the cyst. How do they know it's a cyst? - I don't know. We asked, actually Julie asked cause she literally has a more solid head on her shoulders, if the cyst was a new development. The Doctor said that it wasn't. She also asked if there was danger of it bursting. He, again, said there wasn't.

We usually watch Westworld on HBO on Sundays. I then usually listen to a recap and review and speculation podcast (the recappables westworld) on the Ringer podcast network. It goes up Sunday night but I often listen to it Monday (except they didn't post it this Sunday because of the Holiday which put a serious cramp in my style). Tuesday they post another, shorter, podcast after they've taken some time to review larger group reaction and speculation. That's the same thing I think visits with my Doctor need. Another one. A chance to digest and develop new, relevant questions. Especially this time since the presence of a cyst (?) is entirely new. Luckily the Doctor is very responsive to emails. While the drive to the Hospital for another visit would be doable, we did two a month before for the trial, it's not ideal. Plus the Doctor has other important brain cancer business to attend to. So, I think it's important to keep our interactions somewhat minimal (but also enjoyable for us both - to the degree that's possible given the reason). That puts the onus on me when I do send an email for the email to be concise and organized.

I'm now having monitoring MRIs every month. My next MRI will be June 21 and my next meeting with my Doctor is June 25. At that meeting we will discuss the latest MRI and the current situation. That recency bias will make some of the questions I develop now obsolete. It's like Apple is updating my head monthly with each MRI. The 25th will provide the setting and leave a month for me to organize my next round of questions ahead of their irrelevance. Right now it seems many of those currrent questions will now revolve around this cyst.

Out with the old, in with the... old.

My last MRI showed two dots on my cerebellum, just below where my tumor was. The spots may either be new tumor or necrosis (dead tissue from radiation, which isn’t completely likely but also fits). On May 24th I’ll have another MRI - one month earlier than planned. That MRI will have two extra tests that will help my doctor determine the make-up of the spots. One month will give the spots time to possibly grow or stay the same, and I already have a meeting with my doctor on May 30 (and the clinical trial I'm currently on consists of month long intervals). IF the spots are tumor tissue there’s the possibility of 6 months of low dose daily chemo, additional surgery, or new alternative drugs, or some combination of them. But, that will all get determined after the next MRI.

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In some ways not a ton is different. I'm still waiting for MRI results to help inform a decision going forward. That, and the ability of MRIs to create an image of your brain is CRAZY. That hasn't changed either. In other ways a lot has changed. What has changed is what is being focused on. Changes, in and of themselves, are concerning. Also, this upcoming MRI is earlier by a month so that's different too. But, like they say, "the more things change the more they stay the same" (I don't know who "they" are but apparently whoever "they" are "they" like to say that). Hopefully "they" know what they're talking about and things continue to stay the same despite the changes.

Until the next MRI I plan to continue with "normal" activity more or less. Normal activity includes traveling in a couple weeks to Pennsylvania and hopefully some good coffees. With the new perspective that a reframe of the same old issues provides, what's old is new again!

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.

A weekend walk for balance

Every cancer diagnosis involves two parts. There's the larger, MACRO, research into causes and treatments etc. Then there's also the personal, micro level, that involves how one particular person integrates that diagnosis, and the realities that diagnosis entails, into his or her specific life. We are not just charts and graphs, yet our individual lives are improved by better charts and graphs. It's a balance. The diagnosed person reflects the overlap of where those two circles of concern meet. Both those spheres require and demand attention to attain a balance.

Last year we participated in a run/walk sponsored by my hospital (https://www.wizathon.com/heroesofhoperace/index.php). It raised MACRO level funds for research the hospital specifically conducted.

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Incredibly, despite the Cedar's team name and best efforts, we were unable to terminate all the tumors so they decided to have the annual event again. Unfortunately we were away when it took place this year so we couldn't lend a foot. But, fortunately, our misfortune was rectified when we discovered that another organization I frequent, one that concentrates more on micro level realities, the other side of the cancer coin, is hosting a run/walk of its own to raise funding (https://wespark.org/event/8th-annual-10k-5k-run-walk-kids-fun-run/). Since we will be present for this one, and it's conveniently right down the street, we're happy to provide some extra feet on the ground. (I forgot to mention that the event is also right next to the farmer's market we attend every Sunday. Seriously, brain cancer is just SO convenient!) If you feel inspired to lend your own feet you can come with us, if you're just inspired to help out weSpark you can do that too, or if you're just happy to know about it, now you know about it.

Update:

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We went, we saw, we walked. There's photographic evidence!

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."

Scoreboard. Scoreboard.

The imaging department at my hospital (or the hospital I attend regularly, I don't own it) schedules an anesthesiologist on Thursdays. The imaging department also requires that I have an anesthesiologist on hand for my MRIs. Why they require that is an involved story that wasn’t always the case but now it is. Regardless of why, they do require it. And currently, combating my cancer involves regular MRIs. SO, my last MRI, without necessarily accounting for any other demands of my schedule, was last Thursday. The results were good. Yup, good. Fine. I’m measured in my response because there’s still a bit of tumor (even though it’s a small bit now) in my head. Any tumor in your head, no matter the size, is a little disconcerting. Also, I’m painfully aware that even the absence of visible cancer does not mean no cancer forever. 

I have MRIs every two months, more or less. As a tool that allows the doctors to assess the situation in my head, MRIs provide pivotal information. Yet, as I conveyed earlier, a conclusion drawn from that information is not definitive. The first weekend of NFL football is an appropriate metaphor. Fans are ready to bungee jump, skydive, to a conclusion upon every game result. Suddenly they are seemingly flooded with information after complete deprivation.  Following starving for some knowledge, any morsel of substance seems like a fantastic meal. But that’s dangerous. The juxtaposition of anything with none seems like a ton, however, it’s only one data point. By itself it just sits there, directionless. Two points might help show a direction. Three might start to show a trend. One is a lonely number. 

BUT, without an MRI there is not even a first dot. Without One no Two. That's how numbers and counting work. No foundation, no possibility for a connection, and never the possibility of a trend. Going into the second week of the NFL schedule, a previously undefeated team (1-0) could suddenly boast a .500 record with a loss. Similarly, a previously entirely defeated team (0-1) could suddenly boast a .500 record with a win. The definition of One partially depends on Two.

A contrarian (I know some) might correctly point out that I have multiple past MRIs to point to - to help establish a trend. But those past MRIs assuredly incorporate the effects of other treatments as well - in fact this one even may. With that lack of exactitude, the further away from other treatments the more the results can be attributed to the trial drug. In fact, we will never be able to establish a definite direct causation. The most we can hope to do is find a correlation. Since I’m not willing to be, or ask others to be, the control group I am, in essence, perpetually playing the first game of the season. Sure, it’s very good to have a data point that provides some bearing in the fog (hopefully a lighthouse that prevents the ship from horrendously crashing into the jagged rocks!). But having one point alone is not necessarily enough to triangulate a position. I’ll just have to settle for 1-0. It's much better than the other way around.

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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.