Covid craziness and Consonance

pictoral proof that we celebrated Easter.

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

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

Quarantine got you down? Well...

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

A man, a plan, a canal, Panama.

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

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

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

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

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

next month

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

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

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

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

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

Contrast

Contrast. In a medical setting it’s a chemical used durring MRIs to help highlight certain areas so the neuro-oncologist can see differences in the tissues. Differences help highlight what may be good and may be bad. Contrast, a common setting on a tv and a thing in life, helps people see by delineating differences.

I have had a cold, or the flu, or something, for almost a month. It wasn’t good. I didn’t eat solid food for almost a week. I lost a good amount of weight on my already svelte frame. My balance and strength also went backwards. And I still cough and gag a little. My appetite hasn’t returned to even pre-cold levels. In fact, this morning I even dry heaved a little - luckily I hadn’t eaten breakfast yet so there were no substances to eject.

However, that “sick,” beyond my normal “sick,” “contrasts” my usual - my everyday. Contrasting cold-sick with just regular cancer sick helps me see and appreciate regular cancer sick. Bad looks good when contrasting it with even worse and “bad” helps highlight “better” by contrasting. Without contrast the differences may go unnoticed.

I have my next MRI, Thursday. February 20. They usually use a different contrast agent with me because of an allergy, even though it’s more work. It’s still worth it, for me, because it helps the neuro-oncologist see better. That’s better for me.

This is a follow up to the last post. A post post post (named such by Julie (which makes this a JPS or Julie Post Script (JPS are Julie's initials))).

First of all, the other chemo drug is carboplatinUM.

A few days ago I met with my Neuro-Oncologist. We devised a plan going forward. I have a weekly blood test to monitor certain levels. After my next blood test coming up in a few days I’m going to take a seventh round of the CCNU chemo. Although I could technically take it immediately, waiting a few days longer gives my body more time to recover. I seem to respond well to treatment so being “on treatment” is preferred. “Well” meaning I tolerate it, I don’t get “too” sick, and the tumors don’t seem to get bigger. “Too” meaning I only vomit sometimes, I only shiver and sleep uncontrollably sometimes, and I have only lost some weight and some strength. So one short term goal is to extend “treatment.” I’ll have some more appointments and blood tests and another MRI (at least) after this round of chemo. Then we’ll reassess things and that information will help determine whether to do an eighth round of CCNU or if seven was enough.

If there are any issues or something goes awry the carboplatinum is there, ready to be utilized. To recap: I’m going to take my seventh round of CCNU soon. That will be followed by monitoring and testing which will help determine the next step. Kicking the can a little ways down the road. The next step could be an eighth cycle of CCNU, it could be starting carboplatinum infusions, it could be nothing. Time will tell.

IDK?

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

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

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

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

A positive frame

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

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

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

A (_space_) part!

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

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

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

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

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

Stable

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

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

Ha ha! Plans.

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

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

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

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

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

Overall things are good!

On June 11 I had an MRI. Due to Hospital scheduling changes… on a Tuesday. Weird and awesome. That meant I was able to see the doctor the next day. On June 12 I met with my neuro-oncologist. He liked the things he saw, basically. It’s difficult to approximate the size of what’s left. As is the case with most tumors, it is irregular and non-visible cells can regrow and reemerge from seemingly nowhere (as I well know).

There are a few “micro-hemorrhages” that are not uncommon with one of the drugs I’m on. They just require continued monitoring. They are currently not a big problem, we just want to ensure they stay that way. To that end, my next MRI will be in mid-August. I take my next chemo pills in early July.

I don’t have a ton of apprehension with upcoming treatments because I don’t feel bad (other than the occasional headache. Also, I guess my balance isn’t real great, my coordination leaves a lot to be desired, and I’m fatigued at times). But other than those things… It doesn’t necessarily seem like I’m going to jump from this state to professional athletics but I don’t foresee a ton of jumping from me in general. Considering my physical limitations that’s not a preferred method of motion. Something I can shuffle to, or maybe slowly walk to, may offer a better alternative. My neuro-oncologist would probably point out here that a lot of my cerebellum, a part of the brain that, among other things, controls coordination (coordinates coordination!) has been ravaged by tumors, surgeries, radiation, and chemo. Overall though, especially when adjusting to the situation, I don’t feel too bad.

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

“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!

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.