Posts Tagged ‘trigeminal schwannoma’

I had another MRI this past week. I saw the radiation oncologist two days later. The good news is that this time I am not bummed. I’m just ambivalent.

My tumor looks absolutely identical to how it did on the MRI three months ago. I could be disappointed that it still has not reduced in size. But I’m not. Rather, I am happy that it has not grown.

It has now been almost 2 years since I had the radiation treatment. Lots of great doctors did their best to treat it. Lots of great friends and family did their best to pray that it would shrink. It has been treated expertly and, after 2 years, it is likely not going to shrink.

I’ve had some funny, really stupid, thoughts of late. One day I actually said to myself: “Maybe I got a brain tumor because my body wasn’t really prepared for all that extra spinal energy when I got initiated into Kriya Yoga.” Now THAT is a stupid thought. If Paramahansa Yogananda comes to meet me in the afterlife the first thing he’ll do before introducing me to Babaji is to whack me upside my head! 🙂 Silly shit. I’m very sure the next thing he’ll do is tell me I should have done more Kriya’s not less. Duh.

Ok I’m being silly now. But, here’s the bottom line. You don’t always get what you ask for. You can’t change some things. So, I’m working on that phase of acceptance. I’m working to remember that I have a choice in how I react. It’s a blessing that my tumor is benign. It’s a blessing that my tumor is not growing. It’s s blessing that I live in a city with a world-class research institution. It’s a blessing that I have Patt to support me. It’s a blessing that I have a numb eyeball instead of, say, numb… well, never mind. It’s a blessing that this is an annoyance not a life-threatening ailment. There are lots of blessings to be found here.

My challenge – which I’m working hard to accept – is to CHOOSE to be grateful for the blessings rather than dwell on all the things that I want to be different. I’m trying to move into a space of gratitude.

I wonder if it will go away if I just do more Kriyas? 🙂

All of you know that I’ve kept a really solid sense of humor since I was first diagnosed with a (benign) Trigeminal Schwannoma. I would not have had 6 previous posts with a title this lame if I didn’t. But I have to tell you that I’m not in the joking mood today.

After hitting this little fucker with a big dose of radiation a year and a half ago I expected this annual MRI to show an unchanged to slightly smaller tumor. That is not the case.

It no longer takes more than 2 seconds for me to show you the tumor on an MRI image.Here it is, looking up from the bottom of my skull:

Tumor MRI 1 Aug 17 Zoom

I’m not a radiologist but I certainly know by now that rule number one or two is to look for asymmetry. Not hard to find when you scroll through the studies. I’m good at that after almost 2 years.

You can’t tell much about the size but, if you look back a year, you can see that it looks about as it did before. If it were as before I would be a happy camper. Unfortunately it is slightly larger and I’m more than slightly disappointed. What I love about my doctor is that she doesn’t try to spin things. When I told her I was bummed she said “yeah, I’m disappointed too”. We were both surprised.

Schwann cells are not very radio-sensitive so this kind of tumor does not generally shrink. But it also does not typically grow. We can’t really tell if the tumor has grown or if this is still just post-radiation inflammation. The latter can actually go on for 2 or 3 years. That is rare but then I’m a special kinda guy.  Whatever it is, it’s slightly larger than it was a year ago.

Regardless, since I’ve been transparent about this all along, I just want y’all to know that this is a bummer and I’m having trouble today in keeping my humor up and running.

I’ve often been asked if they can do surgery and just remove it. The answer is that anything is possible but not everything is worth the risk.

First, if they did try to remove it they would almost certainly further damage the nerve. I’d still choose a numb eyeball over a numb face so there’s that.

Second, let me show you a picture I haven’t shared before. Here is an MR Image from the back of my head.

Tumor MRI 2 Aug 17

You can see the tumor on the right side of the image, Down below – all that shit that does not look like brain – that’s the base of my skull. The tumor is sitting in a little part of that area called “Meckel’s Cave”. Among other things that’s a bitch to get to. It’s also right where my carotid artery enters. It would sort of suck to accidentally cut through that.

Now… the easy thing to do is to use a Guillotine. The problem is that reassembly is tough (I told you my sense of humor about this sucks – that’s the best fucking joke I can come up with. Sorry.)

Interestingly, even among Neurosurgeons there are lots of sub-specialties. Apparently there are guys called “Skull base specialists” who have… like….. REALLY steady hands. They know how to operate down there. But that sounds about a million times scarier than having a room full of nice people shooting a linear accelerator at you for a few minutes. So, I’d vote “no” without a hell of a reason.

The good news is that Dr. Kubicky also votes “no”. She says that it’s difficult to believe that, with the dose of radiation I had, the tumor has really grown. She still thinks this is inflammation and wants to just keep watching it unless the symptoms change. For the first 2 years watching it was sort of fun. Now, now so much.

So, to summarize my rambling update: Next MRI is in 3 months. Until then, nothing much to do. I’m sure I’ll get over the bit of melancholia. In the meantime the only consolation is that I again have something to worry about other than politics.


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.



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!”