Radiation, Chemo, and Christmas

My dad's last day of radiation was on Monday, December 12th. (Yay!) My mom brought my dad to that appointment, and she said that when patients finish their round of radiation, they get to ring a bell to signify that they're done. She has a photo of my dad ringing the bell, and I'll see if I can get my hands on it. I guess my dad will have an appointment in 3 months to evaluate the effectiveness of the treatment. When my dad left the treatment center, they gave him the screen-ish mold of his head that they used in order to focus the radiation on the tumor. I'm not exactly sure what we're supposed to do with it, but while I was visiting one night, my dad thought it made a pretty good bonnet. I can't say I disagree.

On December 21st my dad had an appointment with a neurologist here in Traverse City. He checked out my dad's "deep brain stimulator" to make sure everything was in order, and I think that appointment went pretty well. The neurologist was super nice, and he was also a Michigan grad. When my mom pointed out that my dad had also graduated from Michigan, the neurologist said, "I know; I saw his ring." haha...my dad never takes that ring off. I remember that when I was a kid, I promised myself that I'd get myself a ring just like it someday. Don't get me wrong --  I chickened out when I discovered that the ring was a little more expensive than I'd bargained for. At least I got a degree, though, right?

Christmas was laid back, for the most part, but my dad got to spend some time with family and friends. One of his former exchange students was able to come up here for a couple of days before Christmas. On Friday, December 23rd, we all piled into the car to pick up my dad for a surprise treat: It's a Wonderful Life was playing at the local State Theater, and I know it's my dad's favorite movie (aside from West Side Story). When we arrived at Birchwood to get my dad, though, we discovered that Birchwood was hosting it's own Christmas party, complete with Santa Claus. All of the residents from my dad's wing gathered in the dining hall and waited for a rather feisty and humorous Santa. When Santa asked a guy at our table, "Have you been good this year?" and the man answered "No," Santa said, "Well, I like your honesty. Have a gift!" Santa came by and commented on the U of M Santa hat my dad was wearing (thanks to Karen and Marsha), and then posed for a photo. My dad was touched, actually, and even got a little teary eyed. (I think he's been a little more emotional lately.) Even with the surprise Christmas party, we made it to the movie on time. The theater was packed, and they had a really good energy. There were people of all ages, and an usher  was passing out bells to ring at the end of the movie, when Clarence gets his wings. Although Chad, my mom, and my dad all dozed off at one point or another during the film, my dad seemed to really enjoy himself. He was rather attentive and laughed at all the right times and all that good stuff. I, myself, always get a particularly big kick out of the part where George Bailey asks Clarence to show him Mary, and Clarence says, "You won't like what you see, George: she's an old maid." (dun dun dun...)


My dad's exchange student left on Christmas Eve, and then my sister, brother, and my uncle and aunt arrived. My aunt said that when they went to visit my dad for the first time, my dad cried. I'm sure he's trying to process a lot, but I do hope he knows how much everyone loves him. My aunt and uncle will be here for two weeks from San Francisco, and they've gone to visit him every day. I'm sure my dad appreciates seeing some new faces every now and again, and a personal bonus for me is that I get to enjoy some of my aunt's exceptional cooking skills!!

On Christmas Day, my former pediatrician, Dr. Chang, her granddaughter, Anna, and Anna's husband, Frank, stopped by from Cadillac for a visit. They came to my house, and while they waited for my boyfriend to retrieve my dad from the nursing home, they had happy visit with my mom, and a lot of excited Mandarin Chinese was spoken. I was happy, since I can actually understand some Mandarin. (My mom's family usually uses Cantonese.) They had brought us some delicious Xinjiang Pears, which were a fun treat. When my dad arrived, though, he was the man of the hour. He drank some tea and Heineken, and listened to everyone talk. He wasn't too talkative, himself, and I know he doesn't like too much of a fuss made, but I know he was glad to see everyone.

We opened gifts after my pediatrician and her family left, and afterwards we had a spectacular Christmas dinner. My dad had nearly spoiled his dinner by eating a bunch of chocolate-dipped Oreos that I'd given him as a gift. Still, he managed to eat some honey ham and continue nursing his Heineken. We all ate probably a little too much, and of course my dad finished it off with a big bowl
of chocolate ice cream. When it was all said and done, I don't think my dad made it back to Birchwood until 9:30 or 10pm, but I think it was a beautiful Christmas with the family. Even Charlie, my dad's cat, really seems to have liked Christmas. He's the type of cat who really likes to hide, though, so I think that more than anything, he has appreciated having a small place of reprieve amongst all the people coming and going. There have been many times when I haven't been able to find Charlie, and then I see a little white and brown tail or a little pink nose poking out from under the branches. (10 points if you can find the cat.)

On a final note, thank you, thank you, THANK YOU to everyone who showered my dad with cards and notes for the holiday season. Your thoughtfulness is so moving! It took several shifts to read all the cards to him, and I'm certain that no one else at Birchwood (or in Traverse City or even in Michigan) received so many heartfelt notes and warm wishes over the past couple of weeks. I can't speak for my dad, but for me, your positive energy is ever-present. Despite my strongest inclinations to despair, it's just so darn hard with such wonderful people supporting us! I hope you have a happy and safe New Year!

My dad, mom, and I met with my dad's medical oncologist today. We decided to try to go ahead with chemotherapy starting in January. This was our second time meeting with this oncologist; the first time was in October. My dad slept through both appointments. :/ at any rate, the oncologist said there's a 10-20% chance of chemo helping, but we're willing to give it a shot. I know I don't say this nearly enough, but thank you to all of you for your support. I apologize for not checking in with you to see how you're coping; unfortunately, I've been so hyper-focused on myself. I hope you have good support systems if you're feeling down. I'm so happy that my dad has you in his life.

I just wanted to say a quick thank-you to Linda for stopping by for a visit with my dad tonight. I was just passing through after work, and I barged in on their conversation. Thanks again, and I hope you were able to have a nice chat with my dad despite the disruption! :)

On Cruise Control

Things are going pretty smoothly for now. My dad's been doing two hours of physical therapy every day: one hour in the morning and one in the afternoon. Last week he was getting two hours of therapy in the morning, which left him pretty exhausted by the afternoon. Last Wednesday or so he had a visitor but was so tired from the therapy that, unfortunately, he had to stay in bed. For the most part he's doing well with just some momentary lapses. For example, I played in a jazz band last Saturday and was able to bring my dad to the concert. However, I noticed with a twinge that when he applauded, the applause wasn't as ear-splittingly powerful as it's been my whole life. He always managed to hit his hands together in that sweet spot that gave maximum volume for minimum effort; it's a clap I've been working 29 years to perfect. My dad's applause, though, besides being quiter than I'm used to, went on amusingly long. I'm still glad he got to get out and come to my jazz concert, though. Tomorrow we have our last meeting with the radiation oncologist for a while. I guess after tomorrow, we'll meet with him again in three months to assess the efficacy of the radiation treatment. Three months seems excruciatingly long to me, but I guess this will be a good exercise in patience and living in the moment.

Thanksgiving, Victory, 70 Steps

We had a nice big Thanksgiving meal last Thursday. Thanks for the Thanksgiving messages many of you sent us! Here's a picture of our family and our feast.

On Saturday my dad and I watched Ohio State lose to Michigan in football. That was a pretty awesome day. :) He's definitely losing some hair from the radiation treatments, but when I asked if he wanted me to shave his head, he looked at me like I was crazy, which I took to be a "no." haha

Today my dad started physical therapy. My mom reports that he walked 70 steps today. You can see him with his physical therapist below. Pretty awesome, eh?

Walk to Dance

My dad has been doing much better recently! He has even taken a few steps here or there. He's good at lifting himself up from the wheelchair by pushing off from the arms of the chair, which means that I hardly have to do any work at all to get him up. On Sunday of this week, when he stood up, my mom, brother, sister, and brother-in-law were gathered all around. It was great. He balanced himself by putting his two hands on my mom's shoulders, and then he said, "I'm dancing!" With his jelly legs bouncing a little and his body swaying, he really did look like he was dancing; it was a happy moment.

Then yesterday afternoon, Ian came to visit and my dad had a good conversation during which he (my dad) spoke pretty proudly of his most recent "BM," as he called it. My dad was really excited to see Ian, though, and I think it was the first time since early October that my dad has spoken more than two words about how he's feeling.

I think his main complaint about his stay at Birchwood is that he's always surrounded by women who are trying to control him by not allowing him to get up and walk around whenever he feels like it. Although he's been taking a few shuffling steps, he still should have someone spotting him or holding onto him a little bit. After Ian left, my dad and I took another little walk, and my dad started doing an animated, bouncy little dance step and humming a little waltz. I walked beside him, holding his waist, doing the little bounce step, too. It's really been a fun few days here.

Because my dad is regaining some strength, he's also getting a little bit more feisty, too. As I mentioned earlier, he's been "arguing" with the nurses more. He really resists having to wait for someone to assist him now; for example, when he's ready to get out of bed, he'd prefer to just get up and walk to the bathroom to himself, even though he's really not steady enough yet. When I wheeled him to the dining room, I walked down the hall to leave, and when I turned around, my dad had sort of scooted himself out into the hall to follow me.

It was actually a pretty happy sight for me, since he hasn't taken control of his own "transportation" in about a month. He was just re-evaluated today to see if he can begin physical therapy again, though, so I hope he'll start physical therapy soon and be able to walk with just a walker or something. Keep your fingers crossed!

Visitors, Orchestra...Weight-Bearing!

I'm trying to add a "scheduling" function to the blog so that you can see who's visiting when and sort of arrange your own visits directly on this blog. It doesn't appear to be working, so I'll keep tinkering with it.

A few quick updates --

Last Wednesday (Nov. 9), I went with my dad to his radiation appointment. He was pretty awake on the drive back, and he was in a good mood, too. His bus driver is a wonderful woman who's not only friendly but entertaining, as well. When I told my dad that I liked her, he said, "Me too. . . she's in-your-face!" I thought that was funny.

On Friday, Nov. 11, some family from Toronto arrived to visit my dad for the weekend. We also had a surprise visit by my dad's friend, Sam. My dad was asleep when we all arrived, so we let him sleep for another half hour while we all got more acquainted with each other in the lounge area. Then I actually went back to my dad's room to wake him up. He enjoyed the visit and was laughing at our jokes. This was also "Pocky Day" since the date was 11.11.11, and the number 1 looks sort of like Pocky (an Asian snack). I brought some for my dad to try, and he held it like a cigarette. Ha!

Pocky Day

It was a pretty neat day. Sam said he had thought about wearing some Michigan gear to make my dad happy, but since he was an alum of Ohio State, I guess he just couldn't bring himself to do it. I guess my dad and Sam have a history of razzing each other for their school pride. Sam said that he used to spend all weekend coming up with zingers for my dad, and my dad said, "That's about what you'd expect from someone who went to OSU." I do have to say that with my dad's fatigue and stuff, his condition is particularly well suited to one-liners. This is a blessing since one-liners are a specialty of his.

On Saturday, Nov. 12, my cousins and aunt visited my dad in the morning. My cousin Cindy brought photos to show my dad from her visit to us at Christmas 20 years ago. My brother, sister and I appeared to be giving a concert with an electric keyboard and mics and stuff -- clearly new Christmas gifts. There was a photo of my dad, beardless and quite a bit heavier, tinkering away on the piano. Those photos were a HOOT!

Later in the evening, we all went to an orchestra concert. It was a great concert, but at times my dad's Parkinson's tremor got sort of loud. Part of me was really embarrassed/nervous that he was distracting others in the audience, but I tried to quiet that voice by reminding myself that it's awesome that my dad can get out to hear some live music. I'll have to remember to be less upset when other people distract me during concerts in the future.nAt the end, during the standing ovation, my dad said that he wanted to stand, too! When we all got out to the parking lot after the concert and it was time for me to transfer him from the wheelchair to the car, though, he actually DID stand. I mean, not totally on his own, but I felt like I hardly had to lift him! He used his arms to assist me in getting him to his feet, and then he really was able to bear much of the weight on his own. He even shuffled his right foot to get closer to the car, but I've noticed that he really doesn't seem to have the ability to control his left leg/foot at all. When he tries to take a step with his left foot, his left leg kind of buckles. I hope to get him back on physical therapy soon. I can't remember if I've already mentioned that the physical therapists stopped doing therapy a couple of weeks ago because they said he wasn't making progress anymore, but now with the steroids, it'd be great for him to start up again.

Welp, tomorrow we begin Week 3 of treatment!

Monday, Nov. 7: Improvement

It has now officially been one week since the beginning of radiation treatment -- only 5 weeks to go. My dad has also started with steroids again (he was on them @ St. Mary's in Grand Haven) to reduce swelling. Even by last Friday, either from the steroids or from the radiation, my dad was much more alert and communicative. This was a total relief to me, at least. He has been speaking audibly (unless he's really tired and it's close to nap/bedtime) without any sort of prompting or needing to be reminded about taking deep breaths. He has started making some more jokes, and he has even been feeding himself!! I'm so pleased about all of those developments. He still can't bear any weight or stand on his own, but I'm hoping that maybe we can coach him back to walking a little bit. Wouldn't that be great?

Thanks to Dimitar and Kyu, my "host family brothers" for coming to visit my dad Halloween weekend. Even though we didn't end up having time to carve Jack-o-lanterns, we did pick out pumpkins, which is half the battle. The boys brought a skeleton t-shirt with them from my dad's house and explained that my dad's plan had been to wear the t-shirt and somehow attach the x-ray of his actual left shoulder (from his motor scooter accident in July) to the shirt. So funny! I'll see if I can somehow get a photo of that later so that you can appreciate the full effect.

Thanks very much to Jack and Tom for coming to visit last Friday.They were with my dad during lunch, as I understand it, and up until my dad left for radiation. I hope you were able to have an enjoyable visit!

Thanks, too, to Jonas, Dr. Chang, and the rest of the family for visiting on Saturday. I think we probably haven't all been together in one room since I was 12 years old. I know my dad enjoyed the visit, and even though he has been better able to speak lately, he had his work cut out for him with such a lively group. Dr. Chang was my pediatrician throughout my childhood (I was actually named after her), and she was present at the births of my brother, sister, and I. She said that since I was the firstborn, my dad had been particularly nervous. At one point, the delivery doctor (there must be a name for that kind of doctor) turned away from my mom, looked at my dad, and told Dr. Chang, "You'd better go help him, instead." Then, my dad fainted. Dr. Chang was careful to explain how this wasn't just a regular ol' faint, either -- he slowly slid down the wall he'd been leaning on for support. It's a great visual, isn't it?

I also owe a ton of thanks to the awesome team of people who have been helping with the daunting chore of fall yard work @ my dad's house. I've been impressed with your ability to coordinate trips, equipment, tasks, and just general do-gooding. I definitely have a few lessons I could learn from you all.

It's an overwhelming task to consider how we can ever repay all the people who have been helping out along the way through completing chores, sending cards/letters/flowers, coordinating efforts, calling/texting, driving here for visits, or sending warm thoughts. My whole family feels an enormous amount of gratitude for you. Thank you.

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.