I'm with Dad in Ohio. The girls and I flew in on Sunday. We climbed the skies over Madison to look down at a white blanket across Wisconsin. We descended in Cleveland over a bleak, brown landscape. But last night and today the snow fell and brightened things up around here.
Even though Dad's doing well, re-entry into his world is always a bit of a shock. This whole situation still seems surreal. I can't help but think back 8 months when Dad and Linda came to Madison for Easter. Dad installed French doors in my office, we tooled around town, life was good. Then on May 2, I was at my computer doing some work. It was a Sunday. Scott had taken the kids to church and to run errands. He suddenly burst in on my peaceful moment and said, "Your dad had a stroke." Linda had called him. Of course the rest is history -- we learned it wasn't a stroke, it was brain cancer. Two brain surgeries, rounds of radiation and chemo, seizures, hospitals, Dad's move to Madison, tears, a long list of medications, doctors and nurses and therapists ... Did this all really happen?
It must have, because Dad has aged about 30 years since April.
Today Dad had a good day. His pain from the cracked rib was minimal, he was in a decent mood and his speech and comprehension were at about a 75 percent. I know, I should be glad. But, like I said, re-entry is tough. Instead, today I couldn't help but focus on how much things have changed. This morning we took the kids to Toys 'R Us to spend their gift cards from Linda. HUGE treat for the girls. They wanted Grandpa to come help them find their loot, but he didn't even want to join us. The pre-May Bill would always be up for any activity with his girls -- even shopping! I had to practically force him to ride along. Then we get in Linda's Prius and dumb me forgot how to turn it on without using a key. It's strange enough that I'm the driver with auto-man Bill as passenger, but Dad couldn't quite remember how to run this car either. Pre-May Bill lived for cars, took them apart and put them back together, tinkered with engines as if they were toys.
It's just little things like this that illustrate the big losses. But even among the wreckage, you can still see bright spots ...
We got about 5 inches of snow, so I offered to plow Dad's driveway, which is long and large. Pre-May Bill wouldn't have dreamed of having me invade his space and take over his chores. But Dad just said, "Sure, go ahead." So I put on Dad's Carhartts and Linda's work boots, tromped in the snow to the barn and found the plow. The tractor wouldn't start but I knew from Dad's (nagging) lessons that I had to use the choke. Got it running, brought it up to the garage, and Dad put air in the front left tire. Started plowing and got stuck. "Go get the chains. You need the chains," Dad said. So back to the barn to look for the chains, which I couldn't find. Dad found them and brought them up to the garage. I jacked up the back of the tractor as Dad tried to explain how to put chains on the wheels. Between the two of us, we did it. Mostly I did it, with Dad's direction.
Then I plowed the whole damn driveway. And I was proud of myself. Dad stood in the garage watching me for the longest time. When I finished he laughed and said, "Lisa, you did it! You did great!" That's what made me proud, my Dad telling me that I did something well. You're never too old to be patted on the back by a parent. The rest of the day he smiled at me and mentioned how neat it was to see me plowing. "Lisa, I am impressed."
What was once second nature to him is now impossible, yet he's still such a great man that he's able to applaud me for doing a half-ass job.
So while I mourned the loss of that pre-May Bill, I was also grateful to have any kind of Bill. He may not be plowing driveways or driving me around in the snow or doing all the many manly things he used to do, but he's still an amazing man to me, and I love him.
Monday, December 28, 2009
Wednesday, December 23, 2009
Message from Linda
Dad fell a few days ago and cracked a rib. As if he needed that. But I just talked to him this morning, and he seems -- somehow -- to be in good spirits. He's looking forward to our visit in a few days. The girls and I fly to Cleveland on the 27th to stay for a full week! So let's hope that means more frequent updates on the blog.
In the meantime, Merry Christmas to all. Here's hoping my dad sees some good days. Here's wishing my friends and family and those everywhere who are sad or suffering find some light in their lives.
And here's a note to all from Linda:
"I could not get to Christmas cards this year, but I want to thank everyone for all their encouragement, contact and well wishes to Bill and to me throughout these past months. Our hearts are constantly warmed by the thoughts of our families and friends who love Bill and reach out to us with thoughts, cards and visits. While I did not get the cards sent I certainly want everyone to know you are a real blessing in our lives and have made our difficult times much better and our good days really shine. We warmly wish everyone a Merry Christmas and Happy New Year."
Thursday, December 10, 2009
News from latest appointment
On December 8, Dad had his monthly appointment at Cleveland Clinic. Always tense waiting for results. But results are good! The tumor is stable! No signs of growth and in fact a diminished size in the area that they are following.
The docs explained that Dad's symptoms of slight confusion and speech/comprehension challenges are actually lingering affects of radiation, which killed both good and bad cells. So three months out from his last radiation treatment, he should not be getting any worse in those areas, and may get better. More good news!
Medication regime continues to be complicated, and docs are doing their best to make a chemical cocktail for Dad -- his anti-swelling meds, anti-seizure meds, etc. -- that is therapeutic yet doesn't adversely affect him. He's been experiencing mood swings and muscle pain. And he lapses in and out of a good realm of communication. Some days he speaks so clearly and understands everything you say. Sometimes his speech is garbled and he can barely have a conversation. It's so tough to know why this is happening. Docs are trying to wean him off the steroid (Decadron) because that definitely has long-term negative affects. But decreasing that dosage has given him a variety of problems. It's a constant struggle.
Docs also gave him additional PT, OT and speech therapy. This is more good news! Dad thrives when he's working to improve himself. It makes him feel good, and that alone is worth it. We've also hired a nurse -- Nurse Larry -- to stay with Dad three mornings a week and help him with various chores and errands. Dad was quite resistant to this at first -- no one likes to lose their independence -- but he's getting used to the idea and I think has enjoyed Larry's company.
So all of the above is a nice Christmas gift for us.
However, Dad was depressed after that appointment. It's been difficult to explain to him his prognosis, and we haven't really done so -- why would we? Nobody can know for sure where this will go. But on Tuesday, the doctors talked in detail to Dad about the fact that he still has a cancerous brain tumor that they cannot remove with surgery. Dad wasn't fully aware of this. He said to the doctors, "I know I have a grade 4 tumor, and isn't that bad?" They responded that yes, it's not the best scenario, but that Dad's responding so well to treatment -- better than they expected. Docs put the MRI scans on the computer to show Dad the 1-inch area that's affected in his brain. This is the first time he'd seen any scans. Linda said he was pretty shocked. Nothing like being hit in the head with the fact that you have the worst kind of brain cancer.
But I talked to him yesterday evening, and he seemed a bit better. Still talking about the dire situation, but was able to perk up when I told him that the girls and I would be spending a week with him after Christmas, then Heather and Charlotte will probably come out for a week in January.
At Thanksgiving, Heather and I dug out old slides from the 50s through 80s. Dad has hundreds of them. What a tremendous gift it was to sit with Dad and see so many images of our happy life together. Skiing, boating, vacations, all our old pets, school days, work days, extended family, building a house, making a home together. Dad expressed over and over how happy he was to see those slides. So I brought the whole load of them back to Madison, bought a slide scanner and am going to put them all in digital form for him. Hope to have a bunch printed out and in a photo book for Christmas. Heather is doing the same thing with old pictures. I think we really feel a great need to tell Dad just how much he means to us.
The docs explained that Dad's symptoms of slight confusion and speech/comprehension challenges are actually lingering affects of radiation, which killed both good and bad cells. So three months out from his last radiation treatment, he should not be getting any worse in those areas, and may get better. More good news!
Medication regime continues to be complicated, and docs are doing their best to make a chemical cocktail for Dad -- his anti-swelling meds, anti-seizure meds, etc. -- that is therapeutic yet doesn't adversely affect him. He's been experiencing mood swings and muscle pain. And he lapses in and out of a good realm of communication. Some days he speaks so clearly and understands everything you say. Sometimes his speech is garbled and he can barely have a conversation. It's so tough to know why this is happening. Docs are trying to wean him off the steroid (Decadron) because that definitely has long-term negative affects. But decreasing that dosage has given him a variety of problems. It's a constant struggle.
Docs also gave him additional PT, OT and speech therapy. This is more good news! Dad thrives when he's working to improve himself. It makes him feel good, and that alone is worth it. We've also hired a nurse -- Nurse Larry -- to stay with Dad three mornings a week and help him with various chores and errands. Dad was quite resistant to this at first -- no one likes to lose their independence -- but he's getting used to the idea and I think has enjoyed Larry's company.
So all of the above is a nice Christmas gift for us.
However, Dad was depressed after that appointment. It's been difficult to explain to him his prognosis, and we haven't really done so -- why would we? Nobody can know for sure where this will go. But on Tuesday, the doctors talked in detail to Dad about the fact that he still has a cancerous brain tumor that they cannot remove with surgery. Dad wasn't fully aware of this. He said to the doctors, "I know I have a grade 4 tumor, and isn't that bad?" They responded that yes, it's not the best scenario, but that Dad's responding so well to treatment -- better than they expected. Docs put the MRI scans on the computer to show Dad the 1-inch area that's affected in his brain. This is the first time he'd seen any scans. Linda said he was pretty shocked. Nothing like being hit in the head with the fact that you have the worst kind of brain cancer.
But I talked to him yesterday evening, and he seemed a bit better. Still talking about the dire situation, but was able to perk up when I told him that the girls and I would be spending a week with him after Christmas, then Heather and Charlotte will probably come out for a week in January.
At Thanksgiving, Heather and I dug out old slides from the 50s through 80s. Dad has hundreds of them. What a tremendous gift it was to sit with Dad and see so many images of our happy life together. Skiing, boating, vacations, all our old pets, school days, work days, extended family, building a house, making a home together. Dad expressed over and over how happy he was to see those slides. So I brought the whole load of them back to Madison, bought a slide scanner and am going to put them all in digital form for him. Hope to have a bunch printed out and in a photo book for Christmas. Heather is doing the same thing with old pictures. I think we really feel a great need to tell Dad just how much he means to us.
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