4 rounds of chemo down, good riddance 2015

We’ve made it through four rounds of chemo in 2015. Woohoo! Bill has been an absolute champion and a trooper. The side effects from the Temodar haven’t been fun, but he’s powering through with a great attitude.

How chemo cycles work

Bill is on a 28 day cycle where he is on a drug called Temodar for 5 days, and then off for 23 days. The 5 day portion begins on a Wednesday night, and his last dose is on Sunday. Each day during chemo, Bill eats an early dinner, then takes a Zofran anti-nausea pill about half an hour before bed. At bedtime, he takes 4 x 100mg Temodar pills and ideally sleeps through most of the nausea. The Temodar dosage is based on body surface area, which is a whole weird calculation based on height and weight that they do at the doctor’s office. 

So far, he has felt fine on Thursday and Friday of the cycle, but Saturday around lunchtime is when I really start noticing the slowdown. His appetite plummets and he doesn’t get off the couch for much at all. The side effects really max out on Monday, the day after he takes his last dose. Some of the side effects last through much of the week following chemo. He’s mostly back to normal (with a little reduced appetite) the following Saturday. Basically, Bill feels like crap for a whole week each month.

Let’s break chemo down by side effects... 

Nausea 

During cycle 3, the nausea managed to break through the powerful anti-nausea drug, Zofran, and Bill threw his back out while vomiting up his meds on a Sunday night (the last night of the 5 day chemo cycle). After an after-hours call to the doctor, the last dose of chemo for that round was canceled, since he was having a really rough go of it.

For round 4, Bill was upgraded to an anti-nausea patch (Sancuso) to wear on his arm through his chemo cycles and a couple days afterward. The patch seems to keep the nausea at bay and keeps a pretty steady dose of anti-nausea drugs in his system. He didn’t puke at all during round 4! Fingers crossed that Sancuso continues to work through the rest of whatever chemo rounds Bill does. 

Appetite

Another side effect of Temodar has been reduced appetite. Even when Bill isn’t feeling nauseated, he doesn’t want to eat much, and most savory foods are really unappetizing. Even TacoDeli tacos are too much. Shocking, I know.

We’re managing his lack of appetite by finding the few things that do seem appealing. Bill has done okay with Enu shakes so far, and at a little under 500 calories in 11oz, they are pretty dense. He also likes applesauce, ginger ale, and ginger candies. He seems able to drink cold sweet things like milkshakes and smoothies while on chemo, so P. Terry’s is getting a fair amount of business from us. Our goal is to keep Bill from losing too much weight during each round of chemo, so getting some calories in is important. I’ve never been so grateful for calorie-packed milkshakes as we try to keep him around his normal weight. 

Digestive… uhh… issues...

It wouldn’t be an accurate cancer blog if I didn’t talk about poop a little bit. Let’s just say that poop is important and when poop isn’t going well, nobody’s happy. There are lots of methods for managing poop (OTC drugs and prunes among them), but the main message for anyone on Temodar is to keep track of poop so that you can manage poop before poop is a problem. Poop.

Good riddance 2015. Hello 2016!

Bill has an MRI on Monday, January 4th to take a look at the remainder of his tumor and see if any changes are happening. Keep your fingers crossed for a stable (or even better, SHRINKING!) tumor!

The next round of chemo starts on Wednesday, January 6th. If we only do twelve rounds, the final round will be done in late July 2016, at which point we will be taking a serious vacation once Bill feels okay. There’s a possibility we will do 24 rounds instead of 12, but we’ll jump that hurdle when we come to it.

After a fair number of illnesses and deaths among our friends and family this year, we’re in agreement that 2015 was not the best year, but we’re optimistic for the new year. Here’s to a better 2016!

Phantom smells and round 2 of chemo

The last time I wrote a post, Bill was in the middle of his second steroid taper and had just finished a successful first round of chemo. 

Today, we're in the middle of his second round of chemo. In the past month, here's what's happened.

A couple of days after Bill's taper off the steroids, he experienced some pretty intense olfactory hallucinations, or "phantom smells". He describes the smell that he experiences as "ozone-ish, like the smell of electricity, but not quite." It's not a smell he's smelled in real life, and it's a little unpleasant. He experienced these olfactory hallucinations off-and-on all morning on October 2nd. We called the neuro-oncologist and they had Bill start another course of dexamethasone (the steroid), this time at the lowest dose of .5mg. 

The dexamethasone worked and Bill didn't have any more strange neurological symptoms. He finished that course of dexamethasone last Saturday, October 10th. He did perfectly for 6 days off the steroid, and then experienced a very brief phantom smell on Friday morning (yesterday). Compared to the previous episodes that were minutes long, this one was a few seconds. We called the neuro-onc and they have Bill back on .5mg dexamethasone, and we'll try coming off again in a few days. 

Neurological symptoms are a little scary, but this is all hopefully part of the healing process from surgery. Dexamethasone reduces swelling a little bit, which may take pressure off of whatever area of his brain is causing these strange effects. I'm under the impression that this is one of many weird things that can happen as you heal from a craniotomy, but it's possible that it's a prodrome to a seizure and that we need to add something else to supplement or replace Keppra if it isn't enough to keep Bill seizure-free. We would really like to avoid having to put Bill on a second anti-seizure medication, if possible.

On the chemo end of treatment, Bill started round two on Wednesday of this week (10/14). His dose of Temodar went up to his full dose this treatment round (400mg each night instead of 300mg). He has been doing really well and not experiencing many side effects... at least until a very rapid unexpected wave of nausea hit him while we were driving home from an appointment earlier today. He lost most of his breakfast in my car :(

I, thankfully, managed to keep my sympathetic vomiting under control by pulling over quickly, opening my window, and sticking my head out of it. Poor Bill had to ride home with his breakfast smoothie all over himself and all over his side of the car. 

Cancer protip for caretakers: have a plastic bag and some paper towels in your glove compartment. 

Bill felt immediately better after vomiting, so we gagged and giggled at the ridiculousness of the situation all the way home. He's had a shower, a Zofran (anti-nausea pill) and is good to go. I've spent most of this afternoon cleaning my car. 

If anyone in Austin knows of a good car detailer, my poor little Subaru could use it!

Overall, things are good and we're learning how to be prepared for all kinds of circumstances, including surprise puke ;-) 

Chemo round 1

Caris again. Apologies for the lack of posts about chemo, but for now, no news is good news at our house! Round one of chemo went fine. Bill took his chemo pills from Wednesday through Sunday nights. He was diligent about the prophylactic anti-nausea medication and didn't have any trouble with chemo. One down, somewhere between 11 and 23 to go!

Bill did start having some fairly severe headaches Saturday and Sunday during his chemo treatment (he described 5-6 on the pain scale.) The hypothesis is that the steroid taper that Bill finished earlier that week was a little bit too fast (directly from 2mg of dexamethasone to nothing). The neuro-oncologist had Bill restart the taper from 2mg, with stops at 1mg and .5mg. He is feeling quite a bit better on the low dose of steroids and we were able to work from his office a couple of half-days last week. I'm inclined to agree with the steroid hypothesis as, according to the oncologist, headaches would be a very unexpected side-effect from chemo.

So we will be done with this second dexamethasone steroid taper on Tuesday this week. The steroid has a pretty long decay in the system, so he might not feel the side effects of coming off for a few days. Hopefully it goes better this time and Bill's head doesn't swell up and cause him too much pain. So far, he's been managing pretty well with regular old Tylenol and using ice to manage swelling. We are both looking forward to being back at work a bit more this week and getting to some semblance of this "new normal" we keep hearing about. At least for a little while before round 2 of chemo begins on October 14th.

Hugs for everyone that has been around to support us and just hang out with us when we need it. You are all the best and we couldn't do this without you.

Chemo training

Today I got trained by my oncologist's PA on how to do chemo. The final tumor pathology grading came back as a grade 2 oligodendroglioma (which is the best news!). And now we have a plan for the first rounds of treatment.

On Wednesday, I will start a 5-day on, 23-day off sequence of oral chemo cycles where I take a drug called Temodar at bedtime. Every two cycles, I will have an MRI to monitor the progress of the therapy. This treatment could go on for a long time (multiple years). So far, we have the first 12 cycles scheduled. Side effects are expected to be mild with some prescribed anti-nausea medication taken with the chemo itself. I'm not expected to lose hair or compromise my immune system greatly with this course of treatment. The prognosis for my beard remains strong!

In the mean time, we are also waiting for genetic testing to be done on my tumor samples by Foundation Medicine which may turn up additional treatments that can be taken simultaneously with this chemo. We should know more about their results in the coming weeks.

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).

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.