Get your sh*t together

Caris again. I thought I would write about one thing we've done since coming home from the first hospital visit that has brought me, personally, a lot of peace of mind. I suspect Bill feels similarly.

Being a young-ish childless couple in our 30s, we don't have a lot of responsibilities or liabilities. Hooray! Lucky us.

When we found out was was going on in Bill's brain, I immediately emailed my friend, Melissa, of the Karisch law firm here in Austin. Melissa is an attorney that works in estate planning and all the legal stuff around that. 

Melissa gave us some advice on what kinds of documents we should put into place if Bill was going to be whisked into surgery. Things like:

1. Wills
2. Powers of attorney of various kinds (medical, financial, statutory...)
3. Advance directives
4. Declaration of guardian in case one of us is incapacitated
5. HIPAA authorization so that we can see each others' medical info

Some of this may or may not have defaulted to what we wanted since we are fortunate enough to already be married, but we covered all our bases to be extra careful. 

These are documents we may need to update as our situation changes. If we had kids, we might have needed to spend more time on things like our Wills, but for now, what we've got will hold us for awhile.

If anyone out there is thinking to themselves, "Oh crap, I totally need to do this," they should visit GetYourShitTogether.org and/or contact their favorite local estate attorney. I can highly recommend our friends at Karisch if you live in Austin, as they have been super helpful, fast, and kind.

The part of this I don't get to do

We've gotten a lot of nice comments from our friends and family about how we're handling the mechanical parts of this, attacking the issues, scheduling things, seeking out treatments, etc. We do this to stay busy and try to maintain a patina of control. It's in our nature.

But...

I don't get to participate in my own surgery. I'm gonna show up to the hospital on Thursday morning, and by lunch I'm going to be done, having done nothing active on my own part to help. This weirds me out a bit. It's not that I don't trust my surgeon to do a good job. Far from it, in fact. He seems like the most competent, skilled person I have ever met and will ever meet in my life. These are the kind of folks I like to surround myself with. These are the kinds of folks we like to hire at TACC. These are my friends. I spend much of my day standing in offices kibitzing about problems while we iterate towards solutions. This is how I work.

I don't get to do this with my surgeon.

I'm gonna show up Thursday, count back from 10, and wake up with a headache. There's going to be a couple additional hours missing from my timeline again, and I've got nothing to say about it. Far more than the 5 stages of grief, far more than the possible risks of brain surgery, I'm bothered by the fact I don't get to play along. I'm a learner. I want to know how his tools and instruments work. Where he's going to cut and why. Which parts he'll keep. What goes. What's intuition and what's science. And throughout this experience, I'm going to get practically zero insight into this part. I may have to turn to YouTube for help.

Most people are not interested in seeing this, and at least one friend turned white and had to go outside while Shannon and I discussed head surgery the other day. But, I WANT TO KNOW! I'm pretty sure this is not normal and a sign that there's something wrong with me (besides the tumor).

To Shave or Not to Shave

No real news today. We had a lot of friends come by, though. Sean and Catherine brought breakfast tacos and Bill-sitting while Caris went to the gym, and then Sean's nurse practitioner sister Shannon and brother-in-law Jaime came by to swap healthcare stories. Shannon worked as an OB nurse for a long time at Seton and had some helpful general advice about navigating the hospital.

Dan and Maria came by after that for lunch, wherein we tried unsuccessfully not to talk to much about work. Dan's writing the Stampede annual report which I would normally be helping with, but having a brain tumor seemed to be a passable excuse. I hope he was able to get it done since they're leaving for Hawaii in the morning! My sister called during lunch, and we were able to catch up on both of our simultaneous health issues. She's doing pretty well, too, for which I'm very grateful.

Then my old TAMS friend Mike pulled into town from the Louisiana swamplands bearing homemade pizzas and old times. We caught up over the course of the next many hours and swapped more stories of healthcare woes. Mike's great, and I miss having him in town to hangout in late-night coffee shops and quiet pubs.

It was very nice to have folks around today to pass the time. At some point if it gets quiet, I may go stir crazy, but for now we're doing great with visitors from all parts. Many thanks to everyone who's stopped by so far.

The current remaining question is what to do with my hair and beard. Shannon suggested that I take care of it myself. She said they do a pretty hack job cutting it in the OR, so maybe I'll go get it all clippered down to nothing by a barber, or maybe I'll do it myself. A clean shaven face might also make it easier to keep the breathing junk taped to my face for surgery, too, but I haven't seen my own face in 18 years or so. That might be too much of a shock!

T minus 5 days and counting. Let's get this thing!

This morning we saw my surgeon, Dr. Craig Kemper, again, but for the first time since the hospital. He exudes confidence and control. He's got this. We went through my films again, and he confirmed what everyone has been saying:

• We won't know exactly what this is until we get it out. 
• Resecting it isn't a cure, but it is required. 
• It's probably a grade 2 or 3 astrocytoma but it might be an oligodendroglioma which might be a little better.
• Follow-up radiation and chemo will be necessary, and the chemo should be well tolerated

My team (Kemper, and Charles Conrad the neuro onc recently of MD Anderson) put my case before the tumor board yesterday, and this is the consensus. Caris' dad came and joined us for the consult, and was immensely useful in steering some of the conversation so that I could understand. 

Kemper had the surgery scheduled already for Thursday morning, which was a surprise, since we thought he was going to be out all week. As long as his flight returns on time from wherever he's traveling the first part of the week, we're set.

This afternoon, we had a backup consult with Douglas Fox at NeuroTexas who came recommended from by my father-in-law and by my former TACC colleague Matt Cowpertherwaite. Fox was similar. Confident and direct. He confirmed everything that Kemper has told us, and told us that we were in good hands.

This is brain surgery, and these are the kinds of guys I want doing it. They know what they want to do. They've done it thousands of times before. And they're good at it.

Back to the beginning... Saturday the 15th

Caris, here. Many folks have asked for a slightly more detailed accounting of how we ended up where we are now. This is the story of Saturday, August 15th, 2015.

Things might be a tiny bit jumbled, but I wanted to write it all out before I started mixing the order of events up in my head even further. Bill remembers some but not all pieces of the day, so it's also for his edification.

6am to 8:20am

Saturday morning, Bill awoke rather early with a sort of gasp and a start. He said he was feeling weird and that he had some nausea. He went downstairs to "walk it off" and started walking around the downstairs of our house. Eventually he came back upstairs and told me that he was having some strange sensations and sounds in his right ear. The sound of a rush of blood to your ears, but involuntarily happening every few seconds, and the nausea wasn't much better. I asked if we needed to go see a doctor before embarking on twenty-someodd hours of travel to Rio. Bill shrugged it off and said, "I'll probably feel better with some breakfast."

He took a shower and started packing up the remainder of his things for the trip. I took a shower and started getting dressed. After his packing was complete, he went downstairs to start breakfast. 

A couple minutes later, I heard a crash. I called his name and got no response, so I ran downstairs to find him having a very stiff-bodied seizure on the floor. The crash had been one of our barstools getting knocked over.

I got him on his side and managed to reach for his phone (plugged in a few feet away) to dial 911. The 911 operator called an ambulance and talked me through what to do. I had already done the right thing, and she had me start counting his inhales into the phone as his seizure subsided and he was in the postdromal phase of the seizure and actually breathing again. Still unconscious, now drooling, but breathing, thank goodness. He had bitten his tongue.

The paramedics arrived. They were happy (or surprised) that I'd known how to handle a seizure. They took over and started asking me questions, getting his insurance info, trying to wake him, checking his blood sugar, etc. They end up calling the fire department to help get Bill onto a stretcher and into the ambulance as there were only two of them. As they do this and take good care of Bill, I went upstairs to put a shirt on, put the dogs up, and call my dad to meet me at the hospital. I was only half-dressed when this started.

The fire department arrived rather quickly and they loaded Bill up and were out the door. They told me which hospital they were headed to and that I'm welcome to go with them in the ambulance, but I might want my car later. I opted for car. I got explicit instructions to take a minute to calm down a bit and to NOT follow them through red lights, but drive safely, obey the rules, etc.

8:45am to 1pm

The ER at Seton. Room 13. Why the hell does an ER have a room 13?

I arrived and Bill is still mostly unconscious, but starting to come around. They had oxygen on him and he was starting to respond to his name and open his eyes. At some point as he's becoming more conscious, my dad arrived.

My dad, for those who don't know, was a practicing internal medicine doc for awhile. He's been out of the medical world for some decades, but he's a fantastic resource when crazy health things happen and an all around wonderful human being. I don't know what people do in these situations without someone like him.

Bill was finally conscious. They gave Bill Ativan to prevent further seizures. It made him sleepy and woozy. He started complaining that he was super duper hungry because he didn't get breakfast, but they can't let him eat until they're sure he's not being whisked into surgery. At that point I was thinking that I was glad he didn't yet make or eat his usual large breakfast smoothie, because that would have been horrible coming up or worse, being aspirated during the seizure.

I called Bill's folks and they started driving to Austin. I contacted our friends in Brazil and the airlines to cancel trips. 

The ER folks got him in for a head CT and had an MRI on order, but that was a longer and slower line and was going to be a couple hours. 

We waited for the MRI to become available. Bill was still complaining about being hungry, and he was upset at the Ativan side effects. He is not good at being on drugs.

They come back with CT results. The results are not great, but CTs don't give us much detail as they are low-res. "A 5-7cm mass of some kind -- it could be a lot of different things," says the on-call internist. We needed the MRI to know more.

1pm to 4pm

They took Bill away for 40 minutes or so for the MRI around 1. My dad and I tried to stomach some hospital food since I hadn't eaten anything at all. I cried for the first time.

They brought Bill back to the room after his MRI. They said he was a great patient and very still. He even slept through part of it. He said it was cool to have an MRI and that he enjoyed it.

Bill started feeling more nauseated and having heartburn. They gave him some anti-nausea meds via IV and some maalox orally to try to settle his heartburn. It went okay for a little while, but he's also still hungry. The Ativan started wearing off and they gave him Keppra, which is a more focused anti-seizure drug that shouldn't have the same loopy side effects.

They came back with a tiny summary of MRI results. "There's definitely something there, but I can't say exactly what. It seems likely that it's a tumor." 

They said we aren't having surgery today, because it wasn't actively bleeding. Hooray? It did mean Bill could eat, so we get him a powerade and some fruit.

They promise us a room on the 6th floor and change the room number at least once. Then we wait.

Bill was extremely excited about the idea of calories at this point. He had two sips of powerade and started feeling badly again. They gave him more maalox since he thought it was heartburn. Maybe 30 seconds after the maalox went down the hatch, he reached for the barf bag that I handed to him... and then I had to leave the room to call the nurse, as I'm a sympathy-puker. I kept it down, Bill did not.

The nurse gave him more anti-nausea meds.

Even more time went by. We actually moved upstairs to a room around 4pm. Number 643. Better than 13, at least.

4pm on

Bill ate a few bites of food, but it was gross and he still felt sick. We started having a small stream of family and close friends, which kept his spirits high, even as he felt bad. The poor nurse needed to replace his ambulance-inserted IV with a regular one and missed on the first (and second and third) try. Bill was unimpressed. A better nurse came in and did the IV and it was fine. 

A neurology resident visited and spent a bit more time explaining the MRI results. There's a necrotic spot in the center of the tumor that might be what's wreaking all of the havoc and caused the seizure. The tumor is not metabolically active and didn't take up much contrast, which is good. He will be on anti-seizure meds and isn't allowed to drive for 3 months after the most recent seizure. She asks me about personality changes over the last few months. I hadn't noticed anything unusual (for Bill!)

I ran home at some point around 8 or 9pm to grab extra clothes and toiletries and electronics for both of us. Fortunately we had both already packed for a trip, so finding these items was easy. 

Back at the hospital, I acquired a cot and maneuvered his bed over in the tiny room. I can't speak for Bill's experience, but I proceeded to have the worst night's sleep I can remember, between trying to contain my sobs all night and the interruptions from nurses checking in on Bill every 2 hours. Lucky Bill got a medication to help him sleep.

I'm still Functional!

For quite awhile we've been supporting the research efforts of the Imaging Research Center. Today I was able to take advantage of their excellent services to get some additional looks inside my head. I had two goals for today: 1. get any additional insight or imagery that might help with my case, and 2. see if there was anything the world could learn by seeing if my tumor was active during certain activities.

Functional MRI allows neuroscientists to understand what parts of the brain are getting blood flow during scans, usually while the subject watches something or performs a simple cognitive activity. The idea being that the brain needs food and oxygen to do stuff, so it draws blood in when it needs it.

I spent about about half an hour in this 3T bad boy. It sang to me in all sorts of dulcet tones. The functional scans were the most musical, everything else was pretty guttural and square-wavy. The next to last scan sequence felt like the machine was being hit with a sledge-hammer. It was amazing. 

We started with a regular scan and then jumped right into the functional task. I went through about 10 rounds of watching a sequence of about 9 images. Each round was either a sequence of faces, buildings, or landscapes. When the next image in the sequence was a repeat of the immediate prior one, I clicked middle finger on a small button pad in taped under my right hand, and when it was not a repeat I clicked my first finger. There were two repeats in each round. After I got the hang of it, it was pretty easy. It's a little challenging for someone like me to lie still in these machines, but they seem to think I was pretty good at it. At least I don't get claustrophobic!

Here we have Jeff, Neal, Chad, Don, and Grace. I'm tragically leaving out Mr X who ran the functional study with me and then zipped off to go start the processing of the data.

Once we were done with the scans we sat for quite awhile with Neal to talk about the main images that they made. Neal was super patient and did an excellent job explaining what we were looking at. Here's a pretty good look at my tumor (image is flipped right-to-left), and you can definitely see it. This is the sort of "look there it is, dummy" mode of the the scanner.

 

The functional scans are still off being processed (almost certainly at TACC). I'll update as soon as I have a copy!

Tumor Rumor

So, I have a brain tumor.

On Saturday 8/15, as we were getting ready to head to Rio for two weeks of vacation and a quick conference talk, I had a seizure instead and woke up in the ER. Subsequent scanning revealed a right frontal lobe tumor that's gotta go. I stayed in the hospital for a few nights and came home Monday afternoon. We're working a wonderful network of connections here and through UT at MDAnderson to figure out what to do next. Biopsy and resection will be next followed by probably radiation and chemo.

Here's a picture of the major vessels in my brain just for show. I'll gross you out with tumor shots later!

I've had a lot of great support so far from family, friends, coworkers and some great medical folks. We've got a long road ahead, and this space will be the best space to find out about what's going on with me. I'm going to stay home from work for a while to deal with all of this, have treatments, see doctors, and generally slack off. I was supposed to be on vacation for two weeks anyway, right?

In the meantime, I'm trying to work in with the folks at the Imaging Research Center at UT to do some pro bono fMRI scans for SCIENCE (TM). We may also see if there's anyone around UT who wants to fully sequence the DNA of any of my tumor cells as well. Exciting times are ahead!

For the most part, visitors are welcome almost any time. We've had a lot of you around lately, and it's been most gratifying to feel your love. Please text, IM, or FB message Caris or I to check on timing and location if you want to come by. I now really understand how important it is to have folks who care for you and your caregivers. If I didn't come see you in the hospital when you were down, I sincerely apologize.

Fuck cancer. Let's kill this thing.