Saturday, July 26, 2014

That was the week that was

It was the last week before school starts again. It was also pretty much a dead loss. Rob caught a virus, and his hyped-up immune system decided to go full nuclear option. Fever, shakes, sweats, sore throat, swollen lymph nodes, inflamed spleen, throwing up - you name the symptom, he had it. This culminated in a nine hour day spent in the ER, because we couldn't keep the hydration up with the fluid loss. They put in 2 1/2 litres of fluid, which is probably the biggest reason for why he felt better, but while he was there they also ran him through a massive series of tests, because they really didn't want to think that this was just some random virus. So there was blood and urine analysis, a mono test, strep test, chest X-ray (in case of pneumonia), CT scan (in case his adrenal gland had ruptured), and then when they discovered his bilirubin was elevated (which made his urine an amazing shade of neon orange), a set of liver function tests.

The upshot of all this? He had a virus, his immune system freaked out, and then the dehydration spiral got him. They sent him home rehydrated with an anti-nausea pill and some pain-killers (after much back and forth with Vanderbilt about which drugs won't interfere with the trial protocol).

We did find out two interesting things though.

#1 - Rob has a benign condition called Gilbert's Syndrome. It apparently causes his liver to produce excess amounts of bilirubin when stressed (E.g. - when he has an infection and is dehydrated). It's otherwise harmless, but does make him a little yellow when he's sick, and occasionally scare ER workers.

#2 - The CT scan showed that in the three weeks since his last CT, the adrenal tumor has increased from 2.8cm to 3.3cm. The doctor at the ER was very unhappy about this, but when he called in Dr. Rez, our local oncologist, Dr. Rez was very nearly giddy with excitement (for his own personal levels of giddy - he's a really lovely person, but not exactly highly excitable). According to Dr. Rez, it is basically impossible that the tumor could have started growing that fast, which means the tumor is inflamed - which means that Rob's immune system has found it and started attacking it. He's quite adamant that it's the best possible sign, and that we should start seeing shrinkage within the next couple of months. (Please, please, please let him be right!)

Anyway at this point, Rob is feeling better, if still easily exhausted. The first day of school is Thursday, and Rob's next infusion is Wednesday, which gives us Monday and Tuesday to get all the school supplies, hair cuts, and generally get things ready to go for school. Gonna be a close one!

Friday, July 18, 2014

Where We Wait

I was going to call this post "Where We Stand", but honestly our lives are mostly waiting right now, so that seemed more apropos.

I had a grand time in Okinawa. Shimabuku-sensei and Tokumura-sensei both kicked my butt, if in somewhat metaphorical fashion. I learned a ton about bo, tekko and tetchu, had my front snap kick absolutely dissected, and generally had an awesome but exhausting time at the two dojo. My broken foot is definitely healed - Shimabuku-sensei opened each class with about 15 minutes of running laps of the dojo barefoot, and then followed that up with technique drills, including kicks to focus bags in batches of 50. So if there were anything still wrong with the foot, it would have showed.

In between the training portions of the trip, we visited the Budokan - a giant dojo/martial arts convention center, Shurijo (Shuri castle), Katsuranjo (Katsuran castle - in ruins), went to Kokusaidori, which is the main Okinawan shopping area and tried several different kinds of foods. Went to Shureido (martial arts equipment store) and bought a gi, dojo bag, and several other random items. Went out to Hamahiga Island. Stayed in a traditional Japanese-style hotel room, complete with tatami mats, futon for sleeping, low table with cushions instead of chairs, and a set of toilet/bathing rooms that has to be seen to be believed.

 Skype is awesome, as Rob and I were able to talk daily, and able to see each other any time he wasn't at work (the work data protocols muck with Skype's video).

My hard-won Japanese seems to be just enough to get me into trouble. Apparently, while my vocabulary and grammar are still limited, my pronunciation is excellent, leading people to think I speak and understand much more than I do. And since disclaiming any ability is only polite in Japan, no matter how good you are, me saying "No, no! I'm still very bad." is just taken as proper modesty. So people kept exchanging a couple of sentences with me, and then launching in to full-on, full-speed Japanese, and being surprised when I would get lost half a sentence in.

I'll probably say more about the Okinawa trip in later posts as things occur to me, but for now, onto the Rob update.

It took a while to finalize everything, but as of last week, Rob is officially in the Vanderbilt study on MPDL3280A/Bevacizumab. He's in the study cohort that receives the PDL-1 drug by itself, rather than the combined medications, which is right where we were hoping he would land. He had the first dose a week ago, and will continue to get doses every third week for the next year, provided the cancer responds in some positive way. If it doesn't then he'll be moved into the dual drug cohort, and if that still doesn't work, it's out of the study and on to conventional treatments.

In unhappy news, the CT scan they did to finalize his acceptance into the study - the first we've had since March 10, when we first found the tumors - showed about 30% growth in the right adrenal tumor. There are still no other metastases showing, which is good, but 30% over four months is a lot more aggressive than we were hoping for.

The actual first infusion was fine, though I hope future visits are a little more smoothly planned out. This time we didn't get our go ahead and appointment time until less than twelve hours before we had to leave to get there. Then once we did get there, there was a lot of waiting around between portions, because he'd been wedged in at the last second. Entirely understandable under the circumstances, but I hope it gets more predictable when they have more lead time.

The day started out with drawing 18 vials of blood for the baseline blood work. Rob seems to have excellent blood chemistry, with the only complaint being that he's mildly anemic - which the 18 vials of blood is hardly going to help, unfortunately. From there we went to the intake interview and final signings of papers - which included the study nurse having to chase the doctor around room to room trying to find him so he could sign the last bit of permission. While she did this, Rob filled out the various "How are you feeling today?" forms, which he'll have to do with each visit, and then we were off to the infusion.

The infusion takes about 90 minutes all-told, with about an hour of the drug running, plus set-up time and time at the end. Then we have to hang around for another two hours, while the nurses stop by and check things like pulse and blood pressure every 20 minutes or so. Fortunately, he's allowed to eat and snacks are available, and we're never short on reading material. After the infusion they draw another two vials to check for drug levels in his blood, and then after the 2 hours are up, we're allowed to go. This first time, we finished right at five, so we went out to dinner first rather than fight Nashville traffic running north (one advantage to having lived in Nashville before, we know when and where traffic is likely to be bad).

Future visits, we can skip the intake interview and chasing around for signatures, plus they will apparently gradually increase the rate of the infusion if he tolerates it well (which he did this first time), so we should be able to get through the whole process a little faster. With any luck, we should be able to see the kids off to school, hit the road, make Vanderbilt by about 11am, and be home again by about 10pm. A long day, but manageable.

Oh - and the next infusion date is also the first day of school - so I really hope they can schedule us in such that we can get the kids off to their respective buses. It would really suck to have to leave the boys to see themselves off for the first day of school. Bad enough that we'll be coming home just about in time to say "Good night".

No noticeable drug side effects thus far. Rob was pretty tired the next day, but not in any way that was distinguishable from the normal tired you'd expect from driving six hours and having seven hours of hospital time in one day. The only day-to-day discomfort he's having at this point is a chronic upper-backache, which seems to be nothing directly cancer related, but rather a combination of his horrible posture, and a tendency to have tension backaches rather than tension headaches. So far we're keeping it down to a dull roar with Tylenol, massage, and Tiger's Balm.

And now we wait. We have another infusion in two weeks, and then a repeat CT scan the visit after that. Until then, all we can do is be as healthy as we can, and hope that all of this is doing some good.