Getting Lined Out
We’ve been home for two weeks now. Between doctor appointments, we’ve resumed somewhat of a routine with my work and childcare, while Luke “rests”. Rest for Luke includes 7:00 am Monday morning meetings at Lucey Electric to check in with the boys and catch up on work details, tying flies, fishing, harvesting garlic, taking down fence and other accomplishable home chores he comes up with that are always more complicated than, say, doing the dishes.
While we spent our first weekend home in requested solitude, we accepted & received visitors last weekend. It was good to see family and friends, but big days are want to take their toll and a few good days can mean a day of recovery – especially since coming off of all pain medication and steroids to help reduce swelling. We did however take advantage of all the extra hands and take a small float on the Teton River. Luke enjoyed his mandatory status as fisherman since docs orders prevented him from lifting anything heavy or, we assume, rowing.
Last week we had a nice reunion with the local doctor who originally caught this issue and helped us tremendously in navigating through the first steps. In celebration, and because it was time, she removed the staples from Luke’s “zipper”. He felt considerably better about 5 minutes after they were out. There’s still a little residual swelling around the top of his jaw that’s causing some discomfort, but that should continue to dissipate over time. He is doing quite well considering he underwent brain surgery just a few weeks ago.
We met with the radiology oncologist in Idaho Falls. He was a good guy, but he felt compelled to reiterate Luke’s diagnosis and the stats to be sure we knew what we are dealing with (and he clued us into the common abbreviation – “GBM” for glioblastma multiforme). It’s practically impossible for me to hear these things out loud and not tear up, not fear the worst and not feel like we’ve been dealt one hell of a blow. It’s hard to stay strong and “know” that he’ll be one of the statistic breakers, even though we feel that way – It’s obviously not a given. The radiation oncologist re-prescribed a small dose of steroids to help keep swelling down during the radiation treatment; they’ve definitely seemed to help him feel better when he’s been on them previously during this recovery, so that could prove helpful over the coming busy weeks.
The radiology crew is all very nice and once things are officially set-up, his visits there should be relatively quick and routine. He had a plastic mesh mask made this week that will ensure that he’s always lined up in the exact same position for his treatments each time. Another downside, in addition to the radiation itself and its inherent risks, is the 1.5 hour drive to get to the appointment (one-way). This will be the status-quo, 5 days a week, for the next 6 weeks beginning Monday. The upside is that it’s not winter and the roads will be clear for easier driving. The general consensus is that most people are fine for the first month, but begin to feel the fatigue by weeks 5 & 6.
We also had two Jackson, WY appointments this week to connect with an oncologist there who comes up from Huntsman Cancer Institute twice a month on Fridays. There was a requisite scare that a 20 mg generic chemo pill would be $10, but the 140 mg version that was also prescribed was going to be $3,100/month. It’s since been figured out and should be the more reasonable insured price for both, but it’s ridiculous that people are forced to imagine, or worse – pay, such exorbitant rates during times like these. Luke will have his blood drawn in Jackson 2x per month during the chemo treatment to keep track of his blood counts, liver & kidney functions. The oncology personnel were all friendly and it looks like we have another good team on our side, semi-locally.
Chemo will begin with radiation and last the 6 week duration. Afterwards he’ll have a month reprieve from everything before beginning another 6 months of chemo. The chemo pill (Temodar) is taken at night and preceded one hour by an anti-nausea pill. The hope is that if you do get nauseous, you will sleep through it. Luke doesn’t tend to be very nauseous generally, so we’re hopeful he’ll be fine through this, but time will tell.
Needless to say, Luke is ready to get the ball rolling and start the routine. He’ll be back to work as much as possible beginning Monday – which promises to be a big day with everything beginning simultaneously. He’s officially 3 weeks out and cleared to do things as he feels appropriate; so of course he ran 4.5 miles today and is eager to get back to his marathon training. His October 5th Portland Marathon is just around the corner… Good spirits persist.
Thanks again to everyone. Your support is overwhelming. xoxo