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!