Surgery #2, this Friday Dec. 15, Time TBD.

Last week was a whirlwind trying to figure out the logistics for getting this new tumor removed. We were mostly worried about potential scheduling problems because of the upcoming holidays-imagining that neurosurgeons surely take days off during this time of year like everyone else.

There were a few snafus with inter-hospital communication about my case, which made last week all-the-more stressful- but Amanda’s determination and persistence resulted in a consultation meeting with our preferred neurosurgeon just this past Thursday….. and fortunately, he IS available to do my surgery – so that’s the plan. Surgery this Friday 12/15 at OHSU here in Portland.

We won’t know the particulars as far as the start time, etc until this coming Thursday the 14th- (the day before). I’ll try to post a quick update here on the blog once I know the time.. Between now and then, I get to do……wait for it…..More MRI’s! These pre-op Mri’s start tonight and also take place on  Thursday night at 9pm. Given the late MRI on Thursday, I’m guessing that I probably wont be the first surgery up on Friday morning, but I could be wrong.

The surgeon has already let me know that he’s going to be able to do something called “M.I.S.” (Minimally Invasive Surgery). As a result, instead of a 7-inch scar on the side of my head like I have from the first operation- this surgery is supposed to only produce a 1-inch scar (back of my head) The surgeon has also informed me that it’s not un-reasonable to think that I may only need to spend 3 nights in the hospital rather than the 4 nights I spent last time. So…I could be home as early Monday 12/18. Hopefully that’s the case! I’m going to do my best to get out of there quickly and get back home. (What happens after that is TBD).

Thanks to everyone for checking in on me/us. We’re so fortunate that we have you in our lives. If you’ve sent a message to me and I haven’t responded yet-rest assured that I undoubtedly indeed have received the message and I am very grateful. I’m usually pretty good at getting back to people in a timely manner, but there just doesn’t seem to be enough hours in each day lately- (sort of an ongoing theme for me).

Regardless…again…….Many thanks and Much appreciation to you!

Love,

Todd

 

A Setback.

The meeting this past Thursday (11/30) to go over my MRI results did not go as I’d hoped. It looks like I have a new tumor.

The new tumor is not located in the same spot as the one that was removed back in July, but it is on the same side of my brain (right)…..Specifically, it’s located further back toward the back of my head (occipital lobe) compared to the old one.. By all accounts, this new tumor grew from non-existent to approx. the size of a grape over the course of 3.5 months. We’re currently at grape-sized and growing.

There are apparently a few options as far as what can be done….but if I had to guess at this point, I would say the most likely scenario is another brain surgery/tumor resection, followed by more radiation and then who-knows-what else. The neurosurgeon has not been apprised of this development yet, but we expect to hear from him at some point on Monday. Things could change once he weighs in.

Given the rapid tumor growth and the pending holiday season, I wouldn’t be surprised if surgery is indeed recommended/possible- that it would need to happen within the next 2 weeks. Waiting until January doesn’t seem likely.

That’s pretty much all I know at this point…We’re still trying to wrap our heads around this predicament. I will update here once a game plan comes together. It’s honestly all up in the air at the moment-so you know pretty much the same as I do as of now.

xoxo,

Todd

2 Down, 1 To Go.

Everything was pretty un-eventful with the first two MRI’s.

“You should give a class on how to do an MRI”, I was told last night by the nurse. (That basically means that I’ve been good at staying still…which is imperative in order to acquire good imagery).

I hope that doesn’t jinx it. Last MRI is this evening!

xoxo,
TC

MRI Time

I will be undertaking my first round of post-radiation MRI’s this evening through Friday evening.

Normally, a patient in my situation would just do one MRI, and be done with it until the docs look at it and give you the scoop.

I won’t know my results until Nov. 30, but I will be doing 3 different MRI’s over the course of these next three consecutive evenings, instead of just the one. This is happening because I am taking part in a research study involving MRI contrast agents.

What is a contrast agent, you ask? Let me begin by making it clear on this blog from the get-go that I know very little about medicine, human biology, doctor/hospital stuff, etc etc…. so, apologies in advance if I butcher some of the technical lingo etc. I’m probably not the best person to explain anything technical, but you can always search on the internet for more detailed (and potentially more accurate) info. For ‘contrast agents’, you could start here.

To dumb it down, a ‘contrast agent’ is something that an MRI tech injects you with during an MRI. It helps them enhance the clarity of the picture of your brain and the blood flow going through your brain. An IV is placed in one of your veins before the MRI begins, so that you’re all set for the injection during the MRI. You’re slid into the MRI tube, and they start the initial scan. About halfway through the scan, they inject you with the ‘contrast agent’ and continue with the scanning.

The ‘contrast agent’ normally used in MRI’s is called Gadolinium. OHSU (Oregon Health & Science University) is studying the use of something called Ferumoxytol as a contrast agent. Ferumoxytol is basically a type of iron (as in the mineral iron). It’s magnetic, so I guess it stands to reason that it might help with Magnetic Resonance Imaging! Ferumoxytol is normally used to treat iron deficiency anemia in patients with chronic kidney disease. One of the researchers at OHSU had the bright idea to try using it as a MRI contrast agent instead of Gadolinium, so that is what’s being studied. Ferumoxytol vs. Gadolinium.

I had started participating in this study before my surgery/brain cancer diagnosis, and I figure that there’s no reason why I should stop now, so that’s what I’m up to for the rest of this week. If there’s a chance that they can get a better picture of my brain, or someone else’s brain down the road, I’m all for it.

Since this is part of a research study, OHSU performs these MRI’s during ‘off-hours’, when the MRI machines are most likely dormant. I had to do my first 2 rounds of these research MRI’s real early in the mornings (at like 6am) back in July prior to my surgery, and then also after surgery, prior to starting radiation. The last MRI that I did was at the end of August, so it’s been a minute! Doing them in the evenings this time around will be much more convenient, I suspect. But it’s still 3 MRI’s instead of just the one.

Day 1 (today): They basically just do a normal MRI using gadolinium as the contrast agent.

Day 2 (tomorrow) They use Ferumoxytol as the contrast agent.

Day 3 (Friday): They do not use any contrast agent.

My docs will look at all of the MRI’s to assess if my tumor has started to grow back, or if any of the other areas of concern have morphed. I won’t find out these results until Nov. 30.

As far as the research study goes, they’ll compare the quality and usefulness of all three images. I won’t likely hear much about that.

That’s it. I’ll probably check back in here after Nov. 30th. Meantime, I’ll leave you with an example of what I’ll have to listen to during the next few days instead of the music that I was fortunate to have during radiation. See how many minutes you can hack it before you turn it off, then imagine listening to it while your head is inside the equivalent of a 5-gallon bucket for an hour!

Best,
Todd

Last Radiation / First Blog Post

**I can (almost) guarantee that my average post on this site will not be as long as this one. A lot of catching up to do! –TC**

Radiation….6 weeks came and went pretty fast. Last session was on this very day.

In the inner-sanctum of the Radiation floor at OHSU, they have a ceremonial bell called the ‘Torchbearer’s Bell’. On the last day of treatment, the patient rings it to signify the completion. Next to the bell, there’s a sign that simply says ‘Onward’.

I’d heard/seen the bell rung a few times during my 6 weeks of appointments there. All of the staff and patients in the waiting room clap as the patient exits. Today I rang the bell myself.

I can’t say I’m going to miss radiation, but the staff was really cool, and I seemingly experienced barely any of the side effects that I was warned about. I did lose half my hair, but that is the least of my concerns. They say it’ll grow back in about 3 months. Beyond that, I wasn’t fatigued. I didn’t puke. It wasn’t scary. It didn’t hurt.  It was good in the sense that I felt as though something was actively being done to help my situation- however slight the benefits may be. We still have to hope this tumor doesn’t decide to (or somehow can’t) grow back. I’ve already maxed out on the amount of radiation that I’ll do. I’m done-done with that, so they tell me. I’ll probably keep taking the chemo pills for one week out of every month. TBD beyond that. From what I understand,  if you did any more radiation than the 6 weeks, you’d be frying too much of the good parts of your brain.

Overall, I’ve been feeling pretty darn good throughout. Clean living…new diet, exercise, rest, no work, lots of love. Dare I say, I haven’t felt this good in years! However, if there’s one thing I’ve learned during the last few months it’s that just because I feel good, does not mean that I am good.

The radiation treatments were Mon-Fri, and each session was only about 10-15 minutes long. I got into a nice routine, since my appts were usually at the same time every day- and they generally ran on-time.

My days have consisted of sleeping in a bit and getting a slow start to the day. Hop in the car and drive away religiously at 10:40am every day, usually after traffic has died down… Roll into Oregon Health & Science University consistently at right around 11am. My secret parking strategy in the K garage never failed me. I’d park the car, and hop right into the elevator up to ‘Radiation Medicine’ on the 4th floor. Usually I was back in the car at around 11:30 and on with the rest of my day.

When I ‘d arrive at the Check-in desk on the 4th Floor, the receptionists would always greet me by name and check me in. Usually I’d only have to wait in the lobby for a couple of minutes until one of the radiation therapists came out from the double doors of the inner sanctum to grab me and walk me down the hall to the ‘Linac2’ (linear accelerator) room where all of my treatments would take place. They’d always ask if I’d like a warm blanket as we passed the ‘blanket toaster’ (that’s a whole ‘nother topic).

What I’ll remember the most about the radiation treatments is definitely – the music. Seriously, no doubt about it. Music was a constant source of entertainment and a pleasant distraction for me. Usually the treatments only lasted ‘about 3 songs’, and then I was outta there.

On the very first day of radiotherapy, when I met the staff that was on-duty in the control room of Linac2, they asked me to state my name and birthdate, as they would do every day over the course of the 6 weeks of treatment, even though they already knew who I was. They would call me by name when they came to fetch me in the waiting room, but then ask me to state my name when we got to the control room. (I’ve come to find out that this is pretty standard in hospitals. They need to make sure they’re blasting the right person with radiation, or operating on the correct persons brain…A bit of liability involved, I can imagine. Before my surgery they even asked me to point to the right side of my head to make sure we were in agreement which side was ‘right’. Better safe than sorry!

But I digress……Music. This is about the music. Once I confirmed who I was, they asked me if I wanted to have music on during the treatments. They explained that they have a streaming music system (Pandora, I think it was). I said sure… why not…I’m down with music. When they then asked me what genre of music I preferred, I actually got stumped for a moment and had to think about it. I was trying to think what type of music would be appropriate for a person to listen to after having brain surgery, being diagnosed with cancer, and now starting chemotherapy and radiation treatment. What do you pick? New Age? Classical? Blues? Reggae? What type of music is appropriate for this? In trying to give them a quick answer without overthinking it, I answered the question how I would have answered it any time prior to this ordeal. “Rock and Roll”.

This first day of radiation was definitely the most memorable music day. After that, I found myself in the habit of writing down the names of the songs that I heard each day. I can make you a playlist if you want:). 5 days a week x 6 weeks x 3 songs a day…that should equal about 90 songs I heard in there.

So, Day 1, after I selected ‘rock and roll’,  I was led in to the radiation room ‘Linac2’. The room looks like something out of a sci-fi film, with a lot of expensive looking monitors, cameras, and robotic arms that reminded me of that scene in Empire Strikes Back where Luke Skywalker gets his new prosthetic hand. Either that scene or something out of Clockwork Orange…

Anyways, Day 1….Music…In the middle of the room is a stretcher-ish looking table that I was instructed to lie down on my back. There’s a head rest mold at one end of the table where you put the back of your head and then you lay out from there, feet back towards the doorway from which you entered. The nurse/therapist/tech (I never know what to call them) grabbed the custom-molded mask that they had made for me a few days prior.  This is the ‘thermoplastic’ mask that they use to help target the radiation and also to immobilize you so that you don’t move while they are blasting you.. It is also used it to make certain you are in the exact same position every day. They want to make sure they are dosing the correct part of your brain, so they line everything up with these green laser beams that criss-cross the room, and lock everything in with their computer from there (I guess).

Again, Day 1…virgin territory….they swing that mask over my head as I’m lying on the table…and talk me through the process as they make sure that I properly press my face into it. They then proceed to strap the mask (and therefore my head) down to the table by attaching the back side of the mask to the underside of the table. It’s pretty tight, but the mesh holes allow you to see through the mask a little bit. I could still maintain my bearings in the room-so that helped reduce the claustrophobia. I could breathe. I didn’t freak out. Good.

At some point, someone tells me that they can’t get the music working. My mouth squished tightly inside the mask, I somehow manage to tell them not to sweat it. Let’s get on with this thing.

So, I’m told that they are going to exit and go into the control room to initiate the procedure, which they do.

The robotic arms begin to move around me, with occasional buzzing sounds, but nothing anywhere near as annoying as the noises that an MRI machine makes. If I squint my eyes from inside the mask, I can sort-of see the robotic arms moving around. Sometimes the table I’m lying on automatically moves up or down, or clocks left or right.

It’s really not that bad. I don’t feel anything. I can’t even tell if the sounds I’m hearing are from when I’m actually getting blasted or just when the equipment is moving around. I employ some techniques I’ve used in MRI machines in the past to help me pass the time….mostly focusing on my breathing…sometimes mentally counting numbers…things like that.

…and then all of the sudden I’m jolted by a blaringly loud sound. Wide-eyed inside that mask, I quickly focus in on what I’m hearing enough to ascertain that they must have fixed the music system….It’s Guns N’ Roses – “Paradise City”- the part right towards the end where Slash is ripping his blistering guitar solo and the song is crescendoing. (It came on at right around 4:44 into the song if you want to play along at home). Slash is shredding on the guitar while Axl sings over top of him. And it’s fucking loud on those speakers. “I wanna go, I wanna know. Oh won’t you please take me home…”

As I lay on the table, picturing Axl in his white leather outfit from the music video, I’m wondering if the staff inside the control room next door has any idea how god-damn loud it is inside Linac2 . “Take-Me-Down-To-The-Paradise-City-Where-The-Grass-Is-Green-And-The-Girls-Are-Pretty. Oh, won’t you please take me home!” Eventually the speakers are turned down to a reasonable level, but even a volume adjustment at this point cannot deny GnR. “I wanna see… how good it can be…Oh won’t you please take me home”. The robot arms continue to whiz around me and the song peaks…“I wanna go, I wanna know. Oh won’t you please take me hoooooommmmmme”.

That. Was. Awesome….Not exactly how I thought I’d be feeling at that moment in time, but I wasn’t complaining! I love that kinda shit.  You could never make it up.

From that point on, I nicknamed the ‘Linac2’ room ‘Paradise City’ in my own head. I was never scared, it never hurt….just business as usual. I kind of imagined myself as going in there for a daily spa treatment…nice warm blanket…good tunes…I imagined the thermoplastic mask as a mud-mask treatment, the green lasers as the cucumbers on my eyes. 3 songs, and then I was on with the rest of my day.

I always arrived on-time and tried to make it as quick for the staff to deal with me as possible….they’ve got a tight schedule to keep. A few seconds of polite conversation during our walk down the hallway to ‘Linac2’ and then it’s on the table, hockey mask on, strap it down to the table, go-time. Afterwards, I was always left plastered with dotted impressions from the mesh mask on my forehead that usually faded away in 10 or 15 minutes.

It wasn’t always the same staff members on duty every day, and some of them were better at getting the music to work than others. Sometimes they forgot entirely, but I never bothered to mention it to them. Just counted my numbers and breathed.

I’m not sure exactly what the stations were called on the system they were using, but I’m guessing that some staff interpreted ‘rock and roll’ as ‘70’s rock’ (Led Zeppelin, Skynnrd, Steve Miller) Other techs must have interpreted ‘rock and roll’ as ‘80’s rock’. That’s when I’d get a dose of Journey, Def Leppard, Guns n’ Roses, and AC/DC. Some days it seemed to be a collection of era’s. I couldn’t help feeling amused when I pictured the vision of myself strapped down to this robotic table wearing the ‘Jason’-style hockey mask while the speakers are blasting ”I am Iron Man!” from Black Sabbath, or ”THUNDER!…THUNDER!!” from AC/DC. That cracked me up.

So, in summary…I’m glad I chose music, and ecstatic that I picked ‘rock n roll’. I hate to imagine what would have gone down if I had selected ‘Gangsta Rap’ or ‘Yacht Rock’ as my genre. And as far as the radiation itself, painless. While it is/was really only a preventative measure for what I’ve got (Glioblastoma), hopefully whatever tendrils that may be left of that tumor got sufficiently fried.

Next item on my calendar is new MRI imaging, taking place the week before Thanksgiving, and then a meeting to go over the results scheduled for the week after Thanksgiving. I’ll check in back here around then! xoxo Todd