Archive for the ‘My Schwannoma’ Category

It’s been about 9 months since I last updated everyone on my brain tumor and, if you think I’m not telling you enough then, all I can say is “have patience“. Hard as that may be, that’s what I’m learning to do.

Since I last bored you with my progress I’ve had 2 MRIs. One was last February and the other was last week. Both were multi-planer multi-sequence imaging studies both with and without Gadavist contrast. In the 6 months between the 2 studies the tumor has not changed in size. My radiation doctor says this is a good thing (yay me!). For a film with extremely high production values and an amazing voiceover see below.

          <<<Check this out: My Schwannoma – The Movie>>>

I’m bummed despite the good news. See, for a small percentage of patients stereotactic radiosurgery on a trigeminal schwannoma will shrink the tumor a little bit. For most of us, simply stopping the growth is all we can expect. So, to the folks who don’t have my brain, this is great news because it’s as expected.

But, I’m not an average “as expected” kinda guy.

I set my personal objectives far above average and I expect any little motherfucker that wants to take up space and hang out in MY brain to do the same. Ya wanna be a piece o’ me ya gotta perform to my standards! My doc says that’s not the way things work. I say my tumor should hire my cousin Caitlin as a life coach!

(Actually… that makes no sense since I want the thing to die and dead tumors don’t need life coaches. – Yet another home run for cognitive dissonance. Damn).

That was where the bit about realistic expectations comes in. Here’s the part about patience.

My next MRI will not be for a YEAR. In that time, unless my symptoms change, I won’t see the doctor again. Schwann cells are not very radio-sensitive. So, even if the tumor does shrink somewhat, it will be over the course of a couple of years. When you have a numb eyeball, a couple years is a long fucking time. But, dead schwann cells are like a fine wine (strike that…. it’d be a mixed metaphor unless I find a way to tie life coaching and wine drinking together and I’m too lazy to do that right now even if it is pretty easy.) Anyway…

… But dead Schwann cells take a long time to result after radiation exposure. So, what I really should be doing is to be grateful that this thing grew slowly and happy that my doctor says the treatment is working as planned. But that’s hard.

What I think I learned today is that gratitude is easy to forget and patience is difficult to remember. But, both are keys to getting through any bout with adversity. So, over the course of the next year those are  the skills I need to cultivate.

See… the little bastard taught me something again 🙂

Cheers.

 

Happy New Year!

Posted: December 31, 2015 in Experiences, My Schwannoma
Tags:

Thanks to all who supported me in 2015. I’m taking your love into 2016 and hoping to return it tenfold. Happy New Year!

Tumor MRI Thank You Note Front-1

I have not written about my radiation treatment since it ended. But, we are a few weeks out now and I’m still on some meds. Specifically, I’ve been talking 2 mg of Dexamethasone and my doctor wants me to up that to 4 mg. This is a steroid intended to keep some inflammation at bay. But, it make me weird (weirder?) and so I think it’s fair game for sharing.

I’m not going to get crazy writing. Rather, I’ll just share what I told my friends on Factbook.

Yesterday my friend and neighbor of 25+ years asked to talk for a few minutes. A bit aprehensivly, I went over to his house; fearing thet I had done something ill advised, or wrong, or perhaps just plain offensive. Dave was actually just concerned about me and he wanted to share something that I will in turn share with you.

Compassionately but with his characteristic candor, Dave told me that he has noticed that, since my radiation treatment (probably because I’m on steroids as part of my post-treatment recovery but I don’t know) I have sometimes behaved in a way that is uncharacteristic of who he knows me to be. 

He did not say this directly but I know that I’ve been more argumentative, angrier, less rested, less tolerant, and in general, an asshole. Those are my words not Dave’s. Still, I know that’s what he meant because I’m not stupid and I see it myself.
So there are 2 things I want to say to everyone. 
First, I’m very blessed to have friends in my life who would have the balls to look me in the eye and honestly call me on my behaviors in a compassionate, loving way. Depending on ME, Dave’s words could have gone very wrong so, really, I’m equally blessed to have the emotional maturity to accept those words.

Second, and for all of you, more important is this: Please know that I am taking several milligrams of steroids per day to control the inflammation that results from hitting tissue with a large does of radiation. I have acted strangely, as Dave pointed out, on more than one occasion. This will not last and you may or may not ever see it. But, if you do, please 

(a) feel free to call me on it and 

(b) be aware that it’s not about you or my relationship with you. 

Perhaps you remember me once saying that they could do whatever they wanted to my brain as long as they did not hurt the part that makes me funny. Well, rest assured that this funny little Jewish man with the 40 years of Kriya Yoga and Vispassina meditation practice has not gone away. If it seems that way then I ask that you stick with me and know it’s just temporary and med related. And… I apologize in advance if you have to see in me what Dave did.
Clearly, most of my followers don’t actually interact, hang with, or even know me. But, I hope that seeing what I said to those who do will give you some insight into who I am and how I view myself. I hope, too, that something I said to my friends can help you with yours.

Shavuah Tov and Namiste!

Today I have every reason to be thankful for a wide array of wonderful doctors, technologies, friends, and, of course the blessing of being married to Patt Bilow.

If you are one of the regular readers of my blog then you know that I am among the least intellectually consistent people you will find. Although I don’t take the Bible literally, I am very active in my synagogue. Although I tend to be skeptical about most things spiritual, I spent many years as a disciple of Paramshansa Yogananda and the Self Realization Fellowship. Although I am really bad at it, I tend to be as much of a rationalist as my love for Judaism, my love of Kriya Yoga, and my love of all of the amazingly wonderful religious friends that I have in my life allows.

The whole point of writing this blog is that I do struggle with my rationalism in relationship to my interest in, and openness to accepting, other people’s viewpoints. This blog is all about my struggle and my skepticism. It’s intended to allow me to share my wavering thinking with all of you, in the hope that if even one of my posts helps someone else I will have done a good thing. So, once again, as I struggle with rationalism and religiosity, I wanted to talk about Thanksgiving and the ability to build a life of gratitude whether or not one is religious.

This year, I want to do this by sharing my personal set of gratitudes.

One of the most interesting things I’m grateful for is that someone invented a medical technology called MRI. What kind of guy would even think about hitting a human body with a magnetic pulse to get all your atoms to line up and then to image that body by measuring how long it takes them to go back to the way they were! The guy must be a genius. What completely blew me away though was to realize that the genius who invented this technique has almost diametrically opposite beliefs to mine.

You have seen me write here, several times before, that I typically don’t care much for beliefs in creationism or those who deny evolution. What blew me away was to find that Dr. Raymond Damadian the “father of MRI” converted to Born Again Christianity with Billy Graham in the 1950s. Now, if you think I have conflicting thoughts and feelings and views, this guy makes mine look like nothing.

I really don’t understand how a guy with this level of brilliance could be an advocate for creationism; even having written about it in his book. That said, he is clearly a genius, has done more for the medical profession than almost anyone, and has now done more for me than most other people in the world have done for me because, only through his invention, were they able to find my tumor.

One would expect that I would be a fan of a guy who started his college career as a violinist at Juilliard and ended it as one of the most important inventors of a medical device ever. But you certainly wouldn’t expect me to be that much of a fan of a creationist. So the first thing that I want to say is that I am thankful for this guy, and the second thing I have to say is that my respect for him shows once again that I should not make value judgments about a person because of their religious beliefs. I am thankful that I’ve had another opportunity to come to realize this. Dr. Damadian has given me two new things for my collection of gratitude.

  • One, I am grateful for MRI.
  • Two, I am grateful for yet another lesson in religious tolerance.

I’m also indebted to the guys who invented Stereotactic Radiosurgery. Swedish neurosurgeon Lars Leksell first described it in a seminal paper in 1951. His work led to the Gamma Knife. But Dr. Barcia-Salorio in Madrid is the first guy to use something similar to what I just had done. He used a fixed cobalt device rotating around the patient’s head, not for tumors but for blood system malformations. Then Osvaldo Betti in Buenos Aires developed a machine, where you sit in a rotating chair and a linear accelerator (linac) moves in non-coplanar coronal arcs around the isocenter, which is the math wiz way of saying “the thingy ya wanna hit“. I layed on a flat bed which I think came from Federico Colombo in Vincenza who described a multiple non-coplanar arc concept that moved the linac around a couch in 1984. So, gratitude comes again. This time for:

  • Three, I’m grateful for the noble, honorable, ethical, life-affirming uses of radiation that stand in opposition to all the negative results of nuclear science.

But these folks are all people of the past. The present is full of blessings as well. My Neurosurgeon Dr. Burchiel, my Radiation Oncologist Dr. Kubicky, and their entire staffs are medical blessings of the present. The dosimitrist and medical physicist are mathematical blessings of the present. Even my overly expensive American medical insurance system is a blessing in its own way. These are gratitudes 4, 5, and 6

  • Four: I’m grateful that I live in a city where I can drive for 20 minutes to OHSU, a world-class teaching hospital with great doctors and a budget that allows them to own world-class instruments.
  • Five: I’m grateful that mathematics, medical science, and physics have merged in ways that can save, rather than destroy, lives.
  • Six: I’m grateful that I get to work for a company that gives me acceptable medical coverage, despite the costs.

But, clearly, the present has many more blessings than the doctors and scientists. More important than anything else is the people who I call friends and colleagues who have been so supportive:

  • Seven: I’m grateful for the myriad friends of the Jewish, Muslim, Hindu, Buddhist, Christian, Catholic, Eastern Orthodox, Mormon, Unitarian Universalist,  and other traditions, who offered their prayers for me.
  • Eight: I’m grateful for my Objectivist, athiest, and other non-religious friends who offered such encouragement over the past few months.
  • Nine: I’m grateful to live in a community, here in Portland, that offers me the extraordinary friendships of people like Traci, Cindy and Tom, LeeAnn, Jon and Mair, Julie, Ann and Robin, Peter and Yukiko, Michele and David, Mike, and many, many more.
  • Ten: I’m grateful for WordPress, Facebook, and Twitter which have given me connections to my family, friends, and colleagues near and far; and which have allowed me to reconnect with my past in a profound way.
  • Eleven: I’m grateful for my own psychological makeup which gave me a sense of humor, the strength to be powerfully brave in the face of fear, the willingness to work through my feelings publicly, the ability to remain lighthearted amidst darkness, and the ability to turn everything into humor.
  • Twelve: More than anything, I’m grateful to have Patt Bilow by my side, no matter what.

These twelve gratitudes certainly have a spiritual component. Arguably, they may have a religious one. But, I think it’s fair to say that it is not necessary to have a specific view of God in order to maintain these 12 senses of gratitude. Certainly it does not require one to be Christian, or Jewish, or Muslim, or Hindu, or atheist, or anything else. It doesn’t require one to meditate. It doesn’t require one to pray. It doesn’t require one to forsake anything. It doesn’t require one to embrace anything. At least, in all of those cases, it doesn’t require any particular religion or belief system.

All it really requires is to look around, to seek blessings in everything around you, to embrace yourself for who you are, to refuse to give into negativity  (which I am too oft prone to do), and to appreciate your life for what it is, what you can accomplish, and who is surrounding you to support you along the journey.

So this Thanksgiving I want to once again remind us that it is not necessary to have a specific Godhead in order to feel thanks. If you are religious, that is great.  But please don’t think that your religion, or any religion, or any individual believe system is the only path to grace. You don’t need anything supernatural or mystical to feel a sense of gratefulness and thanksgiving, you need only look around and appreciate.

Happy Thanksgiving!

After about 5 months of waiting, testing, imaging, and waiting, I’m happy to say that my Stereotactic Radiosurgery is complete. It will be many months and a number of quarterly MRIs before i know if it worked. They say I might have some headaches, nausea, localized hair loss, and several other side effects. Then again, I may have none. In any case, whatever side effect I have won’t happen for one or two weeks. So, as far as I’m concerned, it’s over and it’s time to celebrate Thanksgiving.

Those of you who know just how verbose I can be will be happy to know that I’m too tired to write tonight. Instead, thanks to the camera work of my loving assistant, Patt, and what little retouching I felt like doing tonight, I’ve prepared a little photo essay. So, here goes:

Patt and I always park down near the waterfront and take the tram up to OHSU. Here we are arriving at the Koller Pavilion where the radiation medicine department is housed.

0. Approaching OHSU

The first person we met with was the RN, Angel. She is very sweet except she’s the one who has to tell me about all the potential side effects. Before my radiosurgery I was taller than she (Kidding!!!)

1. Angel the RN

I did not get to see my Radiation Oncologist until after the procedure. Perhaps that is why my head does not look like it is on straight. At least hers is.

2. Dr. Kobicky

After Angel, my angel, told me everything that could happen after the session, we went into the room with the linear accelerator. Here they told me about the machine and what they would be doing.

3. Varian LINAC

Yesterday I mentioned that there was a whole team of people who would make sure everything went well. Here I am with the other members of the team: the Medical Physicist and the Radiation Technicians.

4. Medical Physicist and Radiation Techs

After laying on the bed, they gave me my Freddie Kruger mask (my term, not theirs).

5. Getting ready for the mask

Then they put it on and locked it down….

6. Attaching the mask

…and adjusted it. (Is she, like, petting me???)

7. Adjusting the mask

Finally, before they kicked Patt out of the room, they showed her how they use the imaging to determine the location of the beams.

8. Showing Patt the imaging

Then they booted Patt out of the room so we have no more photos except the one that I’ve chosen not to include, when my face looked like a friggin’ waffle after they took the mask off. (You know me, I have no shame, I’ll probably end up posting it one day. Not now.)

There is not much to tell you about the procedure itself. They ran 4 radiation cycles, each in an arc. it took about 45 minutes. I felt fine afterwords. I got to take my mask home as a souvenir.

My angel, Angel, mentioned one other possible side effect. It’s not likely, but I may experience some short-term memory loss. So before I forget that I wrote this I’d better…. uh….. shit.

<Intermission>

 

Chapter 9: On Being Apprehensive

By this time tomorrow I will have completed my radiation session and I want to answer a few questions that I’ve recently been asked. Before I do, though, I have to admit something.

I am planning to walk into the Radiation Medicine wing at OHSU tomorrow; to have my Stereotactic Radiosurgery session; and to walk back out, head home feeling fine, and go on about my business of baking breads for Thanksgiving. I am planning to spend Thanksgiving with my friends Nancy and Alvin and to have a perfectly normal day.

But, what I want to admit to all of you who think I’m handling this so well is that I have finally gotten apprehensive. I have read enough about possible side effects like brain swelling and headaches, the limited number of trigeminal schwannomas that actually shrink after radiosurgery, and the complexity of the physics that I am a little scared now.

I’m telling you this so that you know that up until now my humor and lightheartedness has been sincere. You know that because I’m telling you honestly that it’s waning just a tad right now. I know that all of you have shown some amazing benevolence up until now so I hope you’ll all join together with me in saying “Screw it, Bilow. It’s just another learning experience. Get ‘er done and stay positive!” That’s what i keep telling myself, anyway.

Chapter 10: The Big-Ass Zap

I mentioned last time that I will not be treated with a Gamma Knife because OHSU uses a LINAC for the same purpose. I neglected to mention what that means. I’m not the nuclear physicist in the family but I’ll tell you a couple things.

Many of you have heard of this thing called a Gamma Knife. It is a machine intended specifically for treating intracranial tumors. It uses 192 simultaneous beams of Gamma Radiation to deliver a high does of radiation to a tumor in a single exposure.

Gamma Knife is only one way of delivering localized radiation. Another is to use a more generalized linear accelerator (or LINAC). The value of a LINAC to a place like OHSU is that it can be used for more than just brain tumors. To me, as a patient, it is no different. Instead of using Gamma Radiation it uses X-Rays. Instead of delivering 192 simultaneous beams it delivers a single beam sequentially to many locations. Both machines have similar accuracy of 1mm – 3mm and both yield similar results.I just get locked in, lay there, and let the people in the control room give me my big-ass zap.

Chapter 11: The Team

I’ve been joking about how I hope the dude with the ray gun has good aim. Fortunately, I’m the only guy who laughs at that. In reality, there are a bunch of people who make sure this all goes well.

First is my neurosurgeon. One of his main tasks is to make sure that my head is properly positioned and to consult on other important structures (I think that just means all the shit in my brain that ain’t tumor).

Then there is my Radiation Oncologist. She is cool. She and my neurosurgeon developed my treatment plan and she is the main person responsible  for making this all go well. In fact the Nuclear Regulatory Commission requires an “authorized user” for any device like this and that is the role of my Radiation Oncologist.

The other 2 people are the ones who do all the math and design work.

There is a Dosimitrist who manages radiation levels around the contour of the normal structures, double checks the proper orientation of my volumetric image data in the planning software – It would suck to swap left and right(!), computes the dosages for each radiation beam, and does the documentation.

And then there is a medical physicist. He sets up and calibrates the machine, aligns the beam, and, from what I understand, is the guy who actually computes the radiation dose per unit time based on physical measurements of the tumor (which – because he get’s to sit in the other room while I’m bolted into the machine – he get’s to call a “treatment field” around the “target”). I suppose my friends would not be so concerned about me if I had just said I had a “treatment field” instead of a tumor, huh!. But anyway…

The bottom line is that there are enough “checks and balances” that there is no worry about aiming the ol’ ray gun! (so they say).

Chapter 12: But Why’s it Called “Surgery”

The other question I’ve been asked a lot is this: “If they aren’t cutting into your brain then why do they call it surgery?” Here is my interpretation of the answer. When someone has cancer and they give that person many days of low- to mid- level doses of radiation then they call it “therapy”. When it is a very high dose of radiation, done once, targeted at a very small area then they call it “surgery”. Honestly, that’s all I know.

And… Into the the breach we go!

Following the procedure I will do my best to post another bit of writing on this topic. After that, you won’t have to hear from me for a while (at least not about Schwannomas and Radiosurgery!) So, I’ll end with this:

I have evangelical Christians, Mormons, Jews, Unitarians, Muslims, Objectivists, Buddhists, Hindus, Catholics, Eastern Orthodox Christians, Self Realization Fellowship monks, humanists, and all manner of other faiths or non-faiths praying for me, thinking of me, and wishing me well. No matter who is right, I appreciate every prayer, every word of hope, every expression of concern, every bottle of Chateau Lynch Bages (thanks Cope!), and every other good wish I have recieved from my friends and followers. You are all a wonderful community of supporters and I love you all. For now, all I have left to say is:

“Screw it, Bilow. It’s just another learning experience. Get ‘er done and stay positive!”

 

I spent this beautiful Sunday morning getting my second MRI at Oregon Health Sciences University. I want to give those of you who are interested an update. Seriously, I’m not being narcissistic. I am not under an illusion that my medical details are any more interesting than anyone else’s. Please let me know if you are not interested in this stuff. Then I will respond by telling you not to read these because I’m really doing this mostly for myself. In other words, I help myself my explaining how I feel; I use this as the way to do that; and if you don’t find it interesting then that’s totally cool. That’s why God created categories and tags 🙂

A Political Digression

Sunday at OHSU makes me think that it’s probably only in a country with a relatively free market in medical services that one can even get an MRI on a Sunday morning; especially one scheduled only on the previous Friday. This speaks pretty highly of free-market medicine. That’s my plug for Libertarianism. At the same time, I must admit that when I’m about to get blasted with radiation from a linear accelerator, the last thing that should be on my mind is whether this particular facility, and this particular doctor, is or isn’t “in network” with my insurance. So, I have a bit of a more nuanced perspective on socialized medicine now; it would be nice to not have to give a shit who’s paying. But, if we had socialized medicine, there would probably be a 9 month queue for non-emergency MRIs not a 2-day one. So, basically, nothing is perfect.

Chapter 5: What We Did Today

Today’s MRI was different from the last one. The diagnostic MRI uses 3mm slices but for planning treatment they need more accuracy so they use 1mm slices. In my next post I will be able to show you the 1mm slices of my tumor. But, it occurred to me that I’ve never actually showed you the tumor at all. So… check this out:

Here is an MRI image of my head. At the top, you can see my eyes and nose.

Tumor CU1

You can actually see the tumor pretty easily in this image. But let me point it out to you.

Tumor CU2

I am not an expert and I absolutely never will be. But, I CAN see the tumor and I do understand why radiation is better than surgery. It’s sitting on my Trigeminal Nerve and my Carotid Artery is right next to it. So, a one-time radiation treatment works just fine for me!

Chapter 6: The Mask! (How cool is that? – Maybe…)

Before using the images collected today, my neurosurgeon and my radiation specialist will decide if they will use a frame that mounts to my skull or a full head mask.

If they use a frame then I will only have one appointment; there they do a CT, then a treatment design, then the radiation. Poof, I’m done, A frame will look something like this:

Patient_with_Head_Frame_about_to_be_Treated

If they use a mask then I will have 2 appointments: one to make the mask and do the CT and a second for the radiation. The mask is potentially more accurate and looks like this:

hqdefault

As you can clearly see, the mask would be a better take-home reminder of the joy of radiation therapy. It is made from my own head and I can definitely be Freddie Kruger next Halloween!

I won’t know until I get a call from the doctors about which way the want to lock me into the crazy contraption. So, stay tuned for more mask-making fun and games (or not).

Chapter 7: The Magic Machine

They don’t use a Gamma Knife at OHSU. So I was wrong about that.  They use a linear accelerator (LINAC). In this specific case it is made by Novalis and I THINK it uses X-Rays not Gamma Rays (More to come in my next post). I’m not sure of the model but I believe it is a Novalis Tx:

NovalisTx_2_highres

Chapter 8: What Constitutes Success?

The bad news is that only 30% of Trigeminal Schwannomas actually shrink with radiation. This means that the tumor will almost certainly stop growing but the symptoms may never go away. There is a large body of research on Acoustic Schwannomas (on Cranial Nerve 8). But, Trigeminal Schwannomas are quite rare and there is very little data. It seems that Cranial Nerve 5 is rarely affected but, as you would  expect, I’m a special kinda guy. The one really good study – where the 30% number came from – indicates that the treatment is most successful in women (oops, not me) with small tumors (yay, me) that are diagnosed early (yay, me, again). That would mean that, other than being a guy, I’m in pretty good shape. Sadly, that whole study had barely over 30 patients so – like I’m always telling the kids when I judge the science fair – “that’s not statistically significant”.

The other thing this study noted is that,even when the tumor shrinks, the symptoms might not even noticeably improve for around 10 months. So, unless I’m REALLY special I may see and feel no change at all. This begs the question “why do it?” The answer is easy. While the treatment may not make things much better, it will stop them from getting worse. That’s a good thing. In other words, a successful treatment just means the tumor won’t grow anymore.

None-the-less… I like to think that maybe I AM REALLY special!

Thanks for caring enough to read these posts!