Still chugging along

Another update from Linda:

We heard from the Bill's doctor's nurse tonight (Sept. 22), and Bill's lab work looks good. He has felt terrible for 5 days -- dizzy, double vision, weak, discouraged and grouchy...couldn't talk right and trouble understanding. Was it medicine, was it the decrease in Decadron? We don't know but the good news is Bill feels much better today. Nurse Mary said that is the way it is. There are ups and downs and hopefully this up will last.

Despite feeling like a truck ran over him, Bill wanted to get out, and we did. We rode the Cuyahoga Valley Railroad and had a lovely early fall day going to Peninsula for an afternoon. Bill rested under a tree and watched the river and I walked to some shops. Some photos of our day are below.

Did I tell you I work with great people at the JVS? They are the best co-workers, bosses and friends. When Bill had all his pills mixed up, I asked to leave and ran home mid morning from our busy clinic and straightened out the confusion and called our wonderful neighbors Pat and Bob Fraunfelder to make house calls on Bill. It all worked out fine. We are truly blessed and grateful for all the help and understanding.

Staying busy

Dad and Linda have enjoyed friends and family and even some "field trips" ... Some notes and pictures from Linda:

This first picture is Jerry's party. It was so good. The Born's have all been so wonderful -- many thanks to Jerry for hosting the great party. Also, their daily visits and support are helping Bill through many rough spots with great love and laughter. Bill has loved his visits to the farm and talking with the guys.


Joe Plezia organized a lunch for Bill with a great food (as always) and did all the cooking as well. Delicious, and a fun time celebrating Gene's birthday. We are so fortunate to have these great friends and it meant so much to Bill. We were going to go to Joe's, but Bill was not feeling real well so Joe packed everything up and we moved the gathering to Bill's deck and had a lovely afternoon.

This picture is from the Cushman (motor scooter) meeting with his great friend, buddy and the husband of his cousin Carol, Al Murphy -- or "Murph," as Bill calls him.

The next shots are from the zoo -- one of Bill pointing out his mother's name noted on a plaque from a donation he made for her and another of giraffes that Bill loves and has fed and petted many times. Over the years we have adopted many animals (gorillas, hippos, giraffes, wolves, tigers were some of his favorites) and love and support the zoo, especially enjoying all their educational programs.



It has not been easy for my Dad. The pictures tell one story; his daily experience tells another. He gets depressed and is mourning the loss of his prior life. He wants to do many things that he just cannot do right now. He's still incredibly frustrated with his communication difficulties. But in spite of all these challenges, he moves forward. He and Linda, as they always have, embrace life.

I have conversations with him on the phone and try to engage him in things to take his mind off the cancer -- the kids, cars, and just today: Ironman Wisconsin. Scott and I and the kids went downtown Madison yesterday evening to see uber-athletes compete in the 2.5-mile swim/112-mile bike/26-mile run that ended at the Capitol Square in downtown Madison. It was truly amazing to watch these Iron men and women cross the finish line. Dad was astounded as I told him about the race, and he kept saying, "Geez! Wow! No kidding!" He had a bunch of questions, and it felt like old times -- an easy conversation with my Pops. My Ironman.

Life goes on

Greetings from Wisconsin and apologies for the lag in blogging. I must admit that I needed a break. Having Dad back in Ohio, it took us cheeseheads awhile to get back into our routines. Now we have the kids in the school, cool weather and the return of another fall.

As for Dad, he's back to his routines on Becker Road, too. He's enjoyed re-connecting with family and friends and of course Linda. It sounds like his favorite activity has been making daily treks to the farm to see Bill and Jim and "roll the cob" with them. Dad feels best when he can be independent and people treat him like the old Bill. He's emphasized over and over that he doesn't want to be coddled. He's happy getting his own meals, tinkering with stuff around the house, reading, talking on the phone and making those trips to the farm.

This morning there was an incident during his farm walk -- he got dizzy and fell down. It sounds like my old bus driver picked him up in the school bus and brought him home. His neighbors and Uncle Bill have checked in on him, as have Heather and I via phone, and he seems to be okay. We'll continue to monitor him throughout the day, but sounds like it was just a weird glitch. Things like this discourage him, though. Bill wants to be Bill and just do his thing. Of course the disease may have other plans now and then. He'll keep fighting it. Ups and downs, ups and downs.

Heather and I have plans to see Dad each month at least through November. September, he'll be back in Madison for a week for follow-up MRI and appointments with his UW team. October, it sounds like Heather's planning a visit to Ohio. Then November, Thanksgiving with the Born family and a week at Dad's house.

I've had some time to reflect, but not enough time. I need to gather thoughts like ducklings and let them follow me around for awhile until I'm ready to lead them to the pond (blog). It's a lot to absorb. Four months ago, pre-brain tumor, things seemed pretty simple. Now, not so much.

Back to Dad -- Here's another plea to give him a call and/or visit. You would brighten his day, and there's not a man that shows his gratitude better than Dad. So you'd feel good, too.

Welcome Home

Hi, friends and family! It's Heather, your "surprise guest blogger." I am honored to be writing to you all about Dad's first weekend back on Becker Road. Chuck, Charlotte and I (oh, and our dog, Amelia too) decided to drive to Ohio to help Dad get settled in back home and to attend a welcome home party for Dad thrown by my Uncle Jerry. It was really a nice weekend. The best part was seeing how well Dad is doing and how happy he was to be home. Dad said when he first got home he "didn't know where anything was", but with in a day or so he was back to all his routines and giving all of us instructions on using the alarm, sorting trash (from recycling to burning to dumpster, there's a spot for each piece of trash!), and yard work. I was happy to take his instructions, for a change! Physically he is really strong. One morning we walked all the way to the farm and back (about a mile round trip). Dad said he plans to resume his morning walks, so be sure to watch for him on Becker Road and stop to say hi if you see him!

The Born family was very excited to have Dad back home. Everyone wanted to see him, so my Uncle Jerry offered to throw a welcome home party in Dad's honor on Sunday. Leading up to the party Dad was a little worried about being able to communicate with his family (due to his continued speech difficulties). We all assured him he'd do fine and that the family would certainly be patient with him. And of course we were right! Dad had a really great time at the party. So many of the Borns came to welcome him home. Dad enjoyed joking around with all of my uncles and hugging and kissing all my aunts and cousins. Anyone who knows Dad, knows that he loves to be "ribbed" or teased. In Dad's eyes, the more you tease him, the more you love him. Believe me there was a lot of love going around at the party! When we got home Dad said "I know they all love me because they were really riding me." Dad went on to say that he didn't want anyone to feel sorry for him, he wants to be treated as he always has been. So, when you see Dad don't go easy on him!

It was sad to leave Dad today. But I felt good knowing he's back home, where he belongs. The summer in Wisconsin was the right choice for Dad and all of us. He was close to the hospital for treatments and we got to spend a lot of time together as a family. But seeing him back home, sitting in his favorite chair, puttering around in the garage, walking down Becker Road, was great. As I sit and write this post in Maryland I know Dad and Linda are together, at home, and that makes me smile.

A hard goodbye

Bill's now en route to his home on Becker Road. Just got back from the airport, where with a note from his medical team, I was able to escort him to the gate and even on the plane to help stow his carry-ons. He didn't really need my help ... but it gave us extra time together and he didn't have to sit at the airport alone.

Man, was I emotional. Dad arrived in Madison on May 23. That was 96 days ago! Three months of living with someone and you get used to having him around. Sure, we had our moments, but for the most part we just enjoyed each other this summer. After three months, to have to hug Dad goodbye on a small plane with people around me jockeying for seats and storage ... that was tough. The cheesy, sad elevator music playing in the background at the airport didn't help. Nor did the fact that the last time I saw my mom was in an airport. I can still see her crooked smile and her waving at a big, pregnant me from afar. But somehow I managed to hold back tears and helped Dad get on his way. Then, I called Heather and cried, cried more at home, prayed, talked to my mom, wrote Dad a postcard, ate a yummy nectarine -- and now I feel okay.

Onward.

I can't reflect too much on the summer right now ... more to come.

A few notes on Dad's return: I think it will take some time for him to adjust. He IS the same person he was when he left months ago, but he's also changed. He's a bit slower and has difficulty communicating. This is the toughest part for him, and Bill's nervous about how well he'll be able to listen and talk to his friends and family. It got to the point here where we could almost read his thoughts, or at least extrapolate where they'd be going enough to have a conversation. We might be talking about our options as we look for a new car and he might say something like, "Did you see the safe?" which we would correctly interpret as Dad asking us about the safety ratings of a particular vehicle. It's totally possible to have a conversation with Bill; it just takes some patience. I know you will all help him feel comfortable. The best way to do this is to talk in short sentences, slowly. You don't have to speak any louder than normal. But he digests information best in small chunks.

Speaking of your communication with Bill, here's your official invitation to call him and visit him on Becker Road! You should know that starting Sunday, he'll be taking a second round of chemo. He'll only take it for five days, but it sounds like a pretty toxic medication that might leave him sick for awhile. So perhaps give him until that second weekend in September to recover. I know that he'll want to re-connect with friends and family, though. So he might just call you! Also, Bill's been real proficient at napping. So morning calls/visits might work out best, or even up until about 2 p.m., dinnertime or early evenings.

The blogging will continue ... look for a surprise guest blogger this weekend. Then Dad will be coming back to Madison for an MRI in mid-September, and I'll keep up with his trouble-making through phone calls with him and through Linda.

Phew ...

At the airport, Dad picked out an Automobile magazine to read on the plane and he wanted to treat me to some reading material, too. I picked a book called My Stroke of Insight by Jill Bolte Taylor. I heard Jill, a brain scientist, talk on NPR about how she had a stroke and lost her memory and ability to walk, talk, read and write in a matter of four hours. It took her eight years, but she made a FULL RECOVERY. Her stroke was on the left side of her brain, like Dad's tumor, surgery and treatments. In the book she talks about losing that logical, sequential left side of her brain and relying only on the intuitive and kinesthetic right side, similar to how Dad's operating. One review of the book says, "Transformative ... her experience will shatter your own perception of the world." I kinda feel that way about this past summer! But I'll still read the book.

Old World WI

On Saturday we took our last Wisconsin field trip with Dad for the summer. This time we headed south to the world's largest museum dedicated to the history of rural life. Old World Wisconsin is a site of more than 500 acres of land dotted with 60 historic structures from the 19th century. To create the museum, researchers traveled the state to find, rescue and relocate farm and village buildings. Not only can you tour the working farms and village center, but you can talk with people on each site dressed in era costume who are performing the daily chores and rituals from that time period -- milking cows, tending the garden, making bread, washing clothes. Old World is a special place.

Our kids love to go there. In fact one mention of the name "Old World," and MJ and Anna run upstairs do don their own prairie costumes so that can have the full pioneer experience!

It was Dad's first time at OWW, and his comment "This is an awesome place" pretty much sums up his feelings for the day. To get around Old World, you can walk and/or take a tram that travels gravel roads from farmstead to farmstead. Although we did ride the tram, we did quite a bit of walking. Only at the very end of the day did Bill make a small groan that his legs might be a bit sore. Otherwise, he held up well and enjoyed seeing the sights, taking pictures and having lunch under big oak trees.

Here are some shots from the day:

Three more days until Dad heads back to Ohio after three months in Madison. Stay tuned for more on visiting Bill on Becker Road...

Final week in Madison

Thank you and thanks again for continued card delivery! Cards from all over the country have included old pictures, long letters and even stickers for the kids (thanks, Tina!). Dad's always loved cards -- getting them and receiving them. So it's a special time of day when the mail comes and he sits down to open his letters. Reminiscing and laughing, he tucks each card away so he can look at it again later.

Yesterday Dad got a letter, card and pictures from his friend Laura. They were neighbors in Lorain on 2oth Street, where Dad was born and lived for about 20 years. The pictures showed Dad as a fat baby, tall adolescent on a bike and then a handsome young man taking Laura to the prom (and a few other dances!). He always wore his signature Bill smile. Laura, thanks for sending Dad some good memories.

Aside from opening mail, we've tried to keep things pretty low-key around here. No big field trips (although we're thinking of one for this weekend ...) Dad's been doing exercises that the docs gave him and practicing his speech. We take walks and he gets on his computer to check e-mail. He calls Linda and his friends and sometimes just sits outside on the Adirondacks, enjoying the nice weather we've been having. He watches the kids play and asks them 20 questions about the upcoming school year. We take our time during every meal. I got him a 500-piece puzzle that features a scene from Madison, so he's enjoyed working on that. Scott took yesterday and this afternoon off to help so I can do some school prep (we find out the kids' teachers today!). So Dad even spent time fixing a few things with Scott, and two nights ago they watched Gran Torino, featuring Clint Eastwood. Bill loves that movie and said, "That guy reminds me of me!"

I've spent time organizing and just thinking about logistics for Dad's departure on the 27th -- making sure he has enough prescriptions, figuring out plane logistics with Heather and Linda, taking him to get final labs in Madison and talking with docs before his final appointment here on the 25th.

I know Linda misses Bill, and I'm glad for both of them that he'll be home soon.