It's not a GBM!

When you have brain cancer, Glioblastoma Multiforme (GBM) is not the kind you want. It's the worst and least survivable. The Glial cells (to be gross) are the maintenance workers of your brain, they keep things clean, help your neurons do their jobs, etc. They also tend to be the ones that turn into tumors. Astrocytes look like stars (thus the name), and lead to astrocytomas (grade 4 of which is the GBM) when they go bad.

I found out yesterday that my tumor does not look like an astrocytoma, which was very good news. There's still some slow pathology work to be done (which is ongoing), but I have, most likely, a low-grade oligodendroglioma. People live with these for decades with treatment. They have started the genetic workup looking for the 1p/19q chromosomal co-deletions which could be indicative of my disease and possible treatment path. If it stays grade 2, then radiation therapy is out, and I will likely do chemo only. If they find really weird genetic stuff, then some sort of customized viral therapy might be possible. We could make a virus that could force my immune system to attack my tumor directly. This was all very good news to get yesterday. We are keeping our fingers crossed for this to stay a low-grade Oligodendroglioma (2 not 3!, think golf scores here!).

Hospital days - August 28th-29th

Caris, back with more about the hospital visit for Bill's craniotomy. The previous post covered surgery day itself.

Friday, 8/28

Morning after surgery

I arrived at the hospital around 6 or 6:15am and managed to meet up with Bill and his nursing team in the hallway on his way back from an MRI. Hooray for sneaking into the ICU a little early!

Bill said the MRI was fine, as he's starting to get really good at them these days.

His right eye is puffy and purple and his face is swollen. He's also started looking pretty bruised up on his arms. He had a couple of IVs fail the night before, which is apparently a fun side effect of the steroid medication he's on.

Around 7:30, a physical therapist arrived and had Bill stand up on his own, walk across the room, do some side shuffling and marching in place. Bill passed the PT assessment with flying colors and was given the go ahead to walk on his own because his strength and balance are great. Hooray!

Around 8:30 or 9, the surgeon arrived and visited for approximately two minutes. Bill was allowed to start eating solid foods, is encouraged to get up and walk around, and is getting promoted up to the regular floor. He's also allowed to have "fewer tubes", which, in the end means a (rather painful) foley catheter removal an hour or so later.

After the surgeon left, I realized I forgot to bug him about the Keppra problems. Pre-coffee doctor visits are no good.

Around 11am, they got Bill into a wheelchair and we moved up to good ol' floor 6 neuro ward, where we'd been only a few days earlier.

Afternoon and evening

Around 2pm, I realized that they'd forgotten to get Bill's lunch to him. Lost somewhere in the shuffle between floors. But he'd eaten two enormous bran muffins from a huge tray of pastries that Kelly brought he day before, so he felt fine.

We got up and went for a short walk around the floor that evening. There were some visitors in the evening, which I know Bill enjoyed.

When we were both tiring out, the nurse broke it to me that there weren't any cots available, but I could have a recliner. So we wheeled a recliner into the room and I passed out. It was lumpy and not the best, but I was exhausted. It seemed like Bill slept as much as he could, too, between the interruptions.

Saturday, 8/29

Bill woke up with even more of a shiner on his right eye. Many jokes along the lines of, "You shoulda seen the other guy!"

The surgeon came by for another two minute visit, this time to take Bill's bandage off and issue discharge orders for that afternoon. 

The staples in Bill's head look really badass. He was still swollen, but now it looked like he won a bar fight.

We went on more walks, including down to the 3rd floor atrium area. 

Seton protip: The 3rd floor has access to the little atrium area, right in front of the north elevators. It's a nice break from being indoors.

Around 4pm we got discharged. 

Home is the best, and we both slept really hard that night. Puppies and ice packs and an incredible amount of food.

What's next

We're home. There are many naps and many meals arriving at our doorstep. (Thank you, everyone!) 

Bill isn't allowed to exercise besides walking, and isn't allowed to pick up more than 5 pounds. Gotta keep that intracranial pressure under control until he's healed up.

We have appointments with the neuro oncologist and the surgeon in the next week. The neuro-onc should tell us more about what pathology found and help us start working toward a plan for further treatment. The surgeon should make sure Bill is healing up well and take out his staples.

That's all for now!

Surgery day - August 27th

Here's the story of Bill's surgery experience at Seton, as recounted by Caris, who again, was awake for more of the day than Bill ;)

For those who haven't yet heard what happened: he had a seizure on August 15th, which lead to the discovery of a tumor in his right frontal lobe. This is the story of the craniotomy - a resection of much of his right frontal lobe to remove most (but not all) of the troublemaking tumor.

Pre-op

Bill and I arrived at the hospital at 4:45am for a pre-op head marker placement and MRI. We were the first ones in the waiting room and the first ones in a room. 

The anesthesiologist was Dr. Nicholas Lee, and he was great. He found out about Bill's background in fluid dynamics and explained all the different IVs and why they were placed where they were, why their tubes were various levels of firmness, etc. Basically: because of fluid dynamics. Dr. Lee was a really nice guy, and super cool. 

Bill's MRI went well. They placed an IV him, did a ton of checks on his medical history. My friend Taylor's dad, Dr. James Smith, came by. He's an orthopedic surgeon at Seton. He'd heard we were going to be around and came by to say hi and offer some encouragement. It was very kind, and I know Bill appreciated it very much.

The surgeon, Dr. Kemper, came by for a quick chat and Bill was off to surgery right on time. 

During surgery

I was waiting in the ICU waiting room with the larger group of family and friends most of the day. It was a lot of waiting. 

Virginia and Catherine beat me to the waiting room with tacos. My wonderful coworker Taylor brought a huge bag of bagels for sharing. 

Shortly after that, my folks and Bill's folks arrived. Bill's sister and some family friends from Longview arrived. 

Waiting. Waiting. Waiting.

I got a text from Amelia who was picking up samples to take to the tumor bank at UT. Success! I breathed a small sigh of relief, because that meant the surgery was definitely happening and they were mostly done.

An ancient ICU waiting room volunteer who was a bit of a close-talker got a little bit in my face with her somewhat insistent offer to check in on the surgery and make them give me an update. I had just heard from Amelia and didn't want to interrupt the surgeon, so I declined. I thought but resisted screaming, "NO SERIOUSLY, LADY, LET THE BRAIN SURGEON OPERATE ON THE ROCKET SCIENTIST IN PEACE."

Post surgery

The surgeon came by around 11 or 11:30 to tell me that everything went very well and Bill was in recovery in the ICU. The only diagnosis he could offer at this point was to confirm that, broadly, what they had taken out was likely a high grade (~3ish) glioma. He did say that they removed the dark spot as well as a much smaller metabolically active light spot that we had seen on previous MRIs. He was pleased with his work. He left and, of course, I sobbed.

Not two minutes later a clinical assistant came to get me and bring me back to Bill's room as he was already conscious and talking. Bill had described me as "the lady with the pixie haircut," but apparently the (male) clinical assistant had no idea what a pixie haircut was, so he was amused to learn a new term for a hairstyle. 

ICU during the day (noon to 8 or so)

Bill was awake and talking, but still dopey. "Hey baby! Fuck cancer! My head hurts!"

The nurse told me that Bill was the first neurosurgery patient he'd ever seen wave at people as he was being wheeled from the OR to the ICU. Apparently Bill wakes up quickly!

I nearly fainted at one point during my first visit to see Bill, but I do know how to control my vagus reactions (head down below the heart ASAP, so I sat down and put my head between my knees). Bill had a huge angular wound dressing from the middle of his forehead back to the middle of his head and down to his ear. There were little bits of blood on him, and a few visible staples around his head from the tools that the surgeon used to secure him to the table. 

My second visit to see Bill went better, and I didn't feel faint anymore.

His nurse in the ICU that first shift was named Greg. Greg was great. His night nurse was Carrie. It was Carrie's last day in the ICU at Seton before moving on to another job, and I think she enjoyed Bill's sense of humor. Greg and Carrie were attentive with the morphine to help Bill nap off and on, even though Bill claimed it didn't make his headache subside. It did let him sleep through the pain, so that was good. Bill is hilarious on morphine.

Our families and friends traded out short visits with Bill in the ICU with most of us gathered in the ICU waiting room all day.

Keppra panic

At some point around 5pm, I realized that Bill hasn't had his anti-seizure med, Keppra, since he took it at 4am prior to surgery and it's a twice a day drug. I ask Nurse Greg if Bill has had his Keppra and Greg says, "What Keppra?"

I think the look of horror on my face conveyed the urgency of this request. Keppra is very, very important. Keppra is the drug keeping Bill from having seizures. Keppra is numero uno on my must-have-on-time drug list. The surgeon or someone on his team forgot to write an order to continue Bill's Keppra. The nurse called the surgeon. 

The surgeon approved the Keppra and then the pharmacy took forever to fill it. At some point, I offer to go home and get Bill's Keppra from our pills at home, but apparently the hospital doesn't like outside drugs. I threaten that I really do not care and will fix this on my own if I need to. Greg promises me he will not go off-shift if Bill hasn't had his Keppra.

Eventually the Keppra arrives around 7 and Bill doesn't have a seizure. PHEW.

Lesson learned: if you're the patient, it's important to have someone tracking your meds, especially the important ones. This person, this primary caregiver, needs to be there with the patient to ask these questions. Someone who isn't the patient needs to know all the things and needs to ask LOTS of questions. It's helpful if this person has good notes (thanks Evernote!)

How bad would it have been for Bill to have a seizure a few hours out of brain surgery? PRETTY F*CKING BAD.

ICU at night (9pm to 1am)

It became clear that it wasn't going to be feasible for me to spend the night in the ICU with Bill. He wanted his iPhone, but he was dopey enough on his meds to not be able to keep track of it, so I wouldn't let him have it that night. He also needed brain rest, and I knew he'd be all over Facebook and email (possibly saying regrettable things! Morphine is crazy!) if I didn't keep his phone.

I did help him figure out how to call me from the room phone. We discussed a couple times that I had to go home for a few hours because of the ICU rules, but that he could call me, or he could tell his nurse to call me and she would. I cleared all of this with the nurse and told her to definitely call me if he asked, not just in case of emergency.

Around 9, Bill started to nod off again. I made sure his room phone was in reach and kissed him goodnight. I sobbed when I got to the car.

I got home and discussed the day with our house/dogsitter. What a weird day. What a weird two weeks.

10pm

I was getting ready for bed and my phone rang. It was the ICU. Oh crap. 

Conversation excerpt: 

Me:"Hello?"
Bill: "Heeeey baby! Where is everybody? Tell people to come to my room and talk to me!"
Me: "Hey honey! They had to go home. The ICU doesn't allow visitors at night. So we'll all be back in the morning. Are you bored?"
Bill: "oh. So nobody can come talk to me?"
(yes, this is the point where my heart broke.)
Me: "No baby, I'm sorry, not for a few hours. You've got to try to rest though, because it's nighttime. Does your head hurt?"
Bill: "Yeah, my head hurts."
Me: "Maybe ask Carrie for some pain meds? You don't need to endure pain. Use your call button to ask, ok?"
Bill: "OK. I love you."
Me: "I love you, too. See you in a few hours. Try to rest."

I hope he got pain meds, because I knew that the meds would help him sleep. I passed out around 10:30 in my own bed.

1am (the next day)

My phone rang. ICU again. Bill remembered how to use that room phone to dial out, for someone who wasn't remembering a lot of things at the moment. 

Bill: "Where is everybody? Can you come to my room and talk to me?"
Me: "Oh dear, I can't, because I'm home. Everybody else is sleeping right now. The ICU doesn't allow visitors at night, remember? But I'll be there in a few hours so I don't miss the doctor, I promise."
Bill: "Oh, ok" (clearly disappointed in me.)

We repeated some parts of the previous conversation about what would happen the next day, when the surgeon would visit to check in, and said good night again. Poor Bill's internal clock was totally thrown off and he was lonely, bored, dopey from all the drugs and trauma, and in a bit of pain.

I didn't get another phone call from Bill in the ICU that night, so I assume he slept some.

The ICU is confusing and terrible for patients, but the staff there is wonderful. At some point I will write a little bit about the next day or so - our move from the ICU to a regular room and further recovery.

The beard stays....

....for now.

Today we went and got my head shaved because everyone tells me that OR nurses give bad haircuts. But I only had them clean the beard up a bit. If I have an ET tube in the ICU, then they'll have to shave a bit of the beard to tape it on, but otherwise, they'll use velcro in the OR and leave the beard alone!

In 15 hours or so, I'll have less brains. Some people probably think I have an excess, but I am pretty attached to them. They tell me I'm not really using the ones they're gonna take, so I suspect no one will notice.

I got some more scans at the IRC today and settled the paperwork for tissue preservation and donation to the UT brain tumor repo. So now it's just down to the cutting.

I think the Keppra is keeping me pretty flat emotionally about all of this. It really hasn't hit me in any meaningful way that I'm having my skull opened in a major operation tomorrow. Maybe I'll be a puddle of goo at 3:45am tomorrow, but I don't think so.

Thanks very much to everyone who's sent food, gifts, and well wishes so far. It's meant a lot to me and to Caris. We've been massively supported so far, and it's been fantastic.

I'll see you all again tomorrow afternoon.

Today we went and saw Vishy Iyer, Amelia Hall, Max Shpak, and Matt Cowperthwaite who run a brain tumor bank at UT and St. David's. We're going to try to get them a sample of my tumor from the surgery and get it on liquid nitrogen immediately if we can. This is both to preserve it for my later needs and possibly for their future study.

They look for mutations in genes that are related to cancers, and they look at what's turned on and what's turned off in my genome. They do this using things like whole exome sequencing, whole genome sequencing, RNA sequencing, etc. It's really amazing, and I really only "understand" a few buzzwords. Still, I'm looking forward to the possibilities. Much of what I think my oncologist wants  to do based on our initial consult in the hospital last Monday includes genetic work that is the standard of care already, but when we're ready to get fancy with our CheezWhiz, they'll have my tumor in the bank on liquid nitrogen.

The real issue here is likely to be legal in the end. The hospitals are risk averse and getting them to allow Amelia to come to the OR and take part of me away is the hardest step. There will be lots of things to sign. They've done it at St. David's before, and she's nominally set up to do it at Seton, but it's never actually happened before. We talked to Kemper about it (he's in), and I've made the first mention of it to Seton, but we're going to probably push pretty hard on some levers of power to make sure it all comes together in the next couple of days.

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).