Wednesday, Oct. 26: Friends, friends, and more friends

Today, lots of C3 friends visited around lunchtime. Jack and some of the guys from the men's group

joined my dad for lunch, and Ellie, Marsha, Karen, and Patti were there, as well!

Thank you, friends, for making the drive and bringing some sunshine into my dad's life. From what I can gather, my dad was pretty sleepy the whole time. Thanks for sending photos for me to share! Feel free to comment on your visit.

Tuesday, Oct. 25: Doctors

This morning we saw the radiation oncologist and the medical oncologist. It was a rainy day, but Birchwood was able to transport my dad from place to place, which made my job much easier. (That wheelchair lift thingy on those special vans -- awesome!) We got my dad fitted for a mask, which I guess helps with targeting the radiation. My sister, Rosalyn, met me at the hospital. (Have I already mentioned that she and my mom flew in from Denver on Sunday?)

When we got into the room where they were going to take measurements or something for the mask, my dad had to be transferred from the wheelchair to this bed/table. The man who was doing the measurements asked how I normally transfer my dad from the wheelchair to another place, and I said that I normally sort of heave him up and, holding him in a bear hug, just pivot and ease him down where he needs to be. The measurement man then said he'd see if he could get some physical therapists or something to help him. When two guys entered and the three of them, plus some sort of strap, got my dad settled, Rosalyn turned to me and said, "Um, I don't think you should be doing that alone anymore." I started to argue, but then realized she was right.

It took my dad a while to rest on the table enough to take the measurements. His body is very stiff and there's a knot of sorts at the base of his neck, so that when he lies down on a bed, his head remains lifted at something like a 30 degree angle. We had to wait several minutes for his neck and shoulders to relax enough for the measurement man to gently push my dad's shoulders back on the table so that his head could rest on the table. Eventually it happened, and that's good.

After the appointment with the measurement man in radiology, we went directly to the appointment with the medical oncologist. This was actually our FIRST appointment with a medical oncologist, believe it or not. I don't understand this medical system well at all, and I suppose I should be more pushy or something, but unfortunately with my dad as my dad and an Asian as my mom, I wasn't really raised to be pushy.

At any rate, the medical oncologist rated my dad at 40% functionality, and he said that rules him out of any clinical trials. He also said the 12-18 month prognosis is only the case for someone who is able to have total surgical removal of the tumor. Because he doesn't recommend surgery for my dad, he said the prognosis will probably be more like 2-6 months, and he made it sound like 6 months is most likely optimistic. I think my dad was sleeping by this point, so I'm not sure if he has really absorbed this information or not. The medical oncologist said that he recommends that we pursue just radiation but not chemo. He doesn't think chemo will really benefit my dad and it'll be pretty harsh on him. We're still going to go with radiation because when I had asked my dad about it during his lucid day last week, he said he wanted to try treatment.

The medical oncologist also asked why my dad was off steroids (he'd been on them in the hospital to reduce the swelling in his brain), but I had no idea...so the oncologist said we'll put him back on steroids. I think they really helped his mobility and energy levels when we were in the hospital, so I'm optimistic that this will help make him more "present" with us.

Monday, Oct. 24: David Sedaris

Tonight, I brought my dad to see David Sedaris at the City Opera House here in Traverse City. I had bought tickets for my boyfriend and me (I LOOOOVE David Sedaris), but on Sunday Chad realized he wouldn't be able to go. I tried to think of who else would appreciate the ticket, and I thought my dad was the perfect candidate.

In fact, he's the person who first introduced me to David Sedaris. I remember my dad being a camp counselor at my high school band camp, and even more vividly, I remember being mortified that my dad carried a book called Naked everywhere he went. I didn't want my new high school friends thinking that my dad openly read smut. ha!

My aunt, uncle, mom, and sister helped me load my dad into the car. My dad was pretty sleepy on the way over, but he definitely woke up when Sedaris took the stage. He read a lot of new stuff, and he was hilarious, as always. I really enjoyed it, and I think my dad did, too. I seriously caught him smiling a few times! Afterwards, we waited in line to have Sedaris sign my copy of Me Talk Pretty One Day. I wish I'd had the foresight to have brought Naked with me from Norton Shores when I brought my dad. Oh well. I guess Sedaris signs every last copy for every last person in line; his longest signing so far has taken 9 hours! My dad and I only had to wait an hour, but I have to admit that I felt guilty the entire time that I was keeping my dad up late doing something boring like waiting in line. Sedaris was entirely charming, but I was so nervous and felt so guilty that I didn't spend much time chatting at the table. By the time we got back to Birchwood, it was 11pm, and my dad hadn't even eaten dinner yet. It was bittersweet, but I hope my dad enjoyed the night.

Sunday, Oct. 23: Visitors Galore

There have been lots of visitors this weekend! Awesome. Thanks to Destinee and her husband for stopping by and the Chicago CD -- my dad and I listened to that on the way to the orchestra concert Friday night. Thanks to Cathy and Phil for stopping by with the phenomenal scones, and thanks to Paul and Gretta for keeping my dad company while the Lions lost today. If I'm forgetting someone, please feel free to remind me. I'd also like to say that if you manage to take a photo, you can email it to me so I can add it to the blog...that way the blog won't be full of photos that only I have taken.

My brother, aunt, and uncle arrived yesterday, and my mom and sister got here today.
My dad is still speaking very quietly, so it can be hard to hear him talk when we're in the dining hall or other noisier places. My aunt and uncle suggested that he communicate by typing messages into his iPad, but his tremor + touchscreen = not easy. I still have to talk to someone about reducing the tremor...I'm not sure if it's aggravated by the tumor or not.

Thanks again to all of the marvelous, supportive people who were able to stop by this weekend, and to all of you wonderful friends who support us from afar.

Friday, Oct. 21: Orchestra Concert!

Tonight my dad was pretty tired. He had visitors, Destinee and her husband, but I think he slept through it. In fact, he was still sleeping when I got to see him after work, at 5:30. Still, I packed him up and took him to my school to eat dinner and see the orchestra concert. When I pulled onto our campus, he knew exactly where we were. That was great. He also seemed to really enjoy the concert, which was good, since it was phenomenal. The conductor's wife came by to say hi afterwards, and my dad said the concert was "excellent."

 

He was pretty tired and VERY quiet today, though...much different from yesterday. Perhaps he'll sleep a lot and store up for one very energetic day every once and a while. Today he spoke very faintly, and I had to remind him of a trick that the speech therapist has been working on with him: he needs to take a deep breath before he speaks, so that he exhales with a little more force, gets a little more breath support, and gains a little volume. It helps. You should try to remind him to take a deep breath if you're talking with him and can't hear what he's saying.

One of my aunts (my mom's youngest sister) and her husband arrive tomorrow, as will my brother. My sister and mom are arriving on Sunday. I think Cathy will also be coming to visit my dad tomorrow. That's excellent! The more, the merrier, I say.

Thursday, Oct. 20, 2011

Today was a great day! My dad was very talkative, and he was awake the ENTIRE time I was with him -- from 2pm until 9pm. This is the first time in a week that he hasn't fallen asleep while I was with him. Maybe I should take a hint...

I seized this opportunity today to show him all of the beautiful cards he has been receiving from his friends and family who can't be close. I also asked him about a million important questions, and I was grateful that I was able to receive some important answers. Most importantly, he gave the thumbs up when I asked whether he wanted to proceed with radiation treatment or not. I asked him twice: once at the beginning of my visit and once at the end. I used a thumbs-up/thumbs-down method, where he would give a thumbs-up for "yes" and thumbs-down for no. I asked quite a few questions about treatment and other things, and he gave a solid thumbs-up each time. To test whether he really understood my system, though, at the end I asked, "Are you Catholic?" Thumbs-down, immediately; he definitely knew what he was doing. :)

For dinner, my boyfriend, Chad, stopped by with our dog, Asha, who enjoyed eating the cookie crumbs off of my dad's lap. (The best thing about the nursing home is the evening snacks.) Today was a happy day.