The Great Brain Drain Train

Home at Last

2005-06-07T02:16:00.000-04:00

We made it home around 6:30 p.m. We got re-routed around the Mississippi River and also hit quite a bit of construction in Chicago, but we got here in the end.

Bridgette thought she had lost her class ring in our hotel room this morning. We turned the place upside down but didn't find it. Fortunately, it had just dropped into one of our bags. Robert found it when we got home.

Some wonderful neighbors of ours had put up a swingset in our lawn. Evidently their kids have outgrown it, so they gave it to Cassandra. She is thrilled. As we came down the road, she was jumping up and down in her seat calling out "Theo!" "Nehi!" to our two horses. We pulled in the driveway, she saw the swingset and she gasped. "OOOoooooo! Toys!" That was it for her for the rest of the evening. There was no getting her off the thing. We have such great neighbors and friends.

Our house and our animals are in excellent shape. Melanie has been gone for the past few days (she flew to Florida to help her sister and her niece move here), so Sheila has been watching things. All is well -- but a bit fusty from being closed up because of yesterday's storms. We opened the windows and got things aired out. Then Cassandra and I went into town to get food and to pick up Robert's pills (he was getting dangerously low). We used the last traveller's check for groceries, so that worked out well.

Tomorrow will be spent trying to work out finances, mowing the lawn and finishing up the laundry. But we're here, thank God. And this closes the final chapter on the Great Brain Drain Train! It's been an interesting journey. Thanks for sharing it with us... But let's not do this again anytime soon, ok?

Shouldn’t We Be Home Now?

2005-06-06T01:50:00.000-04:00

We would be home if the whole “I-80 is closed for 100 miles due to snow” incident hadn’t occurred. But it did, and we’re not.

We’re in Iowa City. Iowa, in case you weren’t sure. We drove all day. We’re on the 5th Harry Potter book – “The Order of the Phoenix” has been keeping us awake and alert. We certainly can’t count on the scenery to do that.

We ate lunch in Omaha, and stopped here for supper. Olive Garden. Aaaahhhh! We were going to head on to Davenport. And we briefly considered pushing on and getting home tonight. But we wouldn’t have gotten home until at least 1:00 a.m., if all went perfectly. Then Cassandra would have had her sleep interrupted, which never ends well, and it all just seemed patently Not Worth It.

We’ve been wracking our brains trying to figure out what we’re going to do once we get home and must once again deal with real life. But no clear answers are forthcoming. So we’ll wait one more day to tackle them.

Bridgette is enjoying the hot tub. Cassandra has had her bath. And we’re off to bed – our last hotel night for awhile, barring snow closures and other unexpected delays.

Has Anyone Ever HEARD of North Platte?

2005-06-05T02:45:00.000-04:00

Ok: in a nutshell, here is the day:

6:00 a.m. – The moron who stayed in our hotel room before us felt the need to set the alarm as LOUD as possible to go off at 6 a.m. I woke up very peeved with Robert, thinking he had committed the unpardonable sin. But – no. He was just as surprised, and as rudely awakened as the rest of us. Of course, with a 2 year old around, going back to sleep was patently not possible. So we laid around as long as possible, before giving in to the inevitable, getting out of bed and getting going.

9:00 a.m. – Everyone is showered, packed, dressed and grumpy. We picked up breakfast in our hotel lobby, but it wasn’t the greatest. We headed out on I-80, fighting headaches and trying to be civil to each other. Bridgette and Cassandra immediately passed out in the back seat, and the driving was easy, so things really weren’t as bad as they could have been.

11:45 a.m. – Evanston, WY. As we pulled off the road to get gas, and were talking about lunch, I noticed a sign proclaiming that 80 east was closed. No one believed me. And, sadly, I was right. The girl behind the counter at the gas station informed us that it was closed due to snow. Snow! In June! She didn’t seem to think that was at all remarkable. According to those we talked to, the road could be closed for several hours, several days or several weeks. We listened to the AM station that gave updates. I-80 was closed for nearly 100 miles, from Evanston all the way to Cheyenne. Evidently, the road from Laramie to Cheyenne was actually blocked by snowfall. But the road to Laramie was also closed, because Laramie was full to overflowing with all the stranded vehicles.

And so we debated What To Do. We briefly considered getting a hotel room in Evanston, but just couldn’t bring ourselves to check in at noon anywhere – especially when there was no guarantee that we could get back on our way in the morning. We eventually decided to take a “detour.” Which took about 4 1/2 hours. Through God’s left armpit. Honestly. We crossed the Continental Divide 4 times today. Saw enough antelope, elk and beefalo to last anyone a good long while. Crossed the Oregon Trail and Pony Express routes too. Rah. “Oh, look – another sagebrush.”

Actually, it wasn’t so bad. There was a heck of a lot more to look at today than there was yesterday.

4:45 p.m. – To make up some time, we decided not to stop and eat supper like normal, civilized people. Instead, we pulled off at a little Pizza Hut in the middle of nowhere, where I geeked them out over using a Traveler’s Check to pay for our meal. We got a pizza and breadsticks to go and were on the road in less than 20 minutes. Cassandra got her “Pee-Pah Hat!” Everyone was happy.

Today we drove through our first precipitation of the trip. We never did see any snow. By the time we got back on 80, we had driven around it. It did rain some on us, however.

9:15 p.m. -- We decided to pull off for the night in North Platte, Nebraska. Bridgette had just gotten off the highway and was stopped at the stop sign off our exit when we heard the tell-tale squeal of brakes behind us. I had time to yell “let up off the brake,” she did, and started to pull off to the side – and then we got rear-ended.

It’s true.

By a bunch of non-English speaking, uninsured Latino guys from Oregon. In a Corolla. Mmm-hmm. They dinged our rear bumper and did little, if any damage to their car.

I took down their license plate number, the make and model of their car and got the driver’s name. Good Lord! The damage was minimal, so I figured (perhaps wrongly – that remains to be seen) that it just wasn’t worth waiting around for the cops to show up. We were tired and wanted to get to bed. As we pulled to a stop at the next turn, a woman followed us, walked up and knocked on our window. She gave us her name and contact information – said she saw the whole thing and would be glad to be a witness if we needed it.

Getting hit was enough for us to call it quits today. I don’t believe we’ll actually make it home tomorrow, what with the whole “your road is snowed shut for 100 miles in June” scenario, but one never knows.

It’s time for bed. I’ve had about all the excitement I can handle for one day.

The Salt Flats

2005-06-04T00:49:00.000-04:00

Today we drove across Nevada. That about covers it.

Actually, the state was more beautiful that I thought it would be. I thought it would be flatter, and was pleasantly surprised to discover that you can see mountains across the entire width of it.

Several hundred miles was spent driving across the salt flats, however, and even the beautiful mountains in the distance can’t make up for the amazing monotony of things after awhile.

We saw a coyote and some elk. But for all intents and purposes, the day was uneventful.

We drove around part of the Great Salt Lake, saw alkalai mounds that looked like snow drifts, and saw mountains reflected in the flats as if in water.

We ate dinner at a very nice Chinese restaurant in Salt Lake City. (We were going to eat at Pizza Hut, but they only did carry-out and had no restrooms, so… no. I felt bad for Cassandra. She enjoyed her rice and vegetables, but kept asking for “Pee-Pah Hat!”)

We stopped for the night in Evanston, Wyoming, at a very nice Days Inn. Bridgette is taking advantage of the hot tub. Cassandra has had her bath, and the Hendricksons are turning in early. We hope to set out fairly early tomorrow and should be home at some time on Sunday.

For Purple Mountains’ Majesty

2005-06-03T01:47:00.000-04:00

We got up and got packed this morning, cleaned up the house as best we could and filled up with gas. (While at the gas station, another woman waiting in line felt the need to tell me her life’s story; she’s going to be moving to Santa Barbara. It’s very expensive. She can’t go until December because her son is getting his Masters Degree and he had just set their house in Yuba City up for wireless, and it was too complicated to move it all right away. So their house in S.B. is costing them $3100 a month, but they’re not losing too much money because they are renting it out to a very nice family for $2700… See what I mean?)

We got on the road by 10:30. Then, instead of heading straight east (toward home) like any normal people would do, we went… south. Toward Yosemite. Because we’ve never been there, and we’ll never be closer than we are right now.

We had great plans to drive highway 120 through the park itself. But because of the spring runoff, the pass was closed. So we took highway 108 instead. It went through the national forest, but not Yosemite per se. So we didn’t get to see Half Dome. But we certainly got to enjoy most of the day in what is truly God’s Country.

I am quite convinced that in a former life I lived here. ☺ Within an hour of entering the park, I was completely and utterly relaxed. The scenery was beyond spectacular. Enormous pine trees, tamaracks and redwoods stretching up as far as the eye could see. Everywhere you looked, breathtaking vistas.

Oh – and no guardrails.

We’d be driving along on a 26% grade with nothing between us and a 10,000 foot drop except a skinny little white line painted on the roadway.

As we got higher and higher, there was quite a bit of snow still on the ground. At one point, it was at least 8 feet high on either side of the roadway. Bridgette, Cassandra and I made snowballs and threw them at each other – a snowball fight in June! At one point we got out of the Santa Fe and hiked a short ways down to a river that was running alongside the roadway. Bridgette tested the water and pronounced it FREEZING!

We also hiked a short way up the mountain (we were already at 9,000 feet and had slight headaches from the altitude, so we figured we might as well be a little out of breath as well) and took pictures of us standing in front of these huge redwoods. They were squatty, considering how high up we were, but their trunks were quite large and impressive.

The whole day was spent looking out… and up… and down… I just can’t get over how astoundingly beautiful it is. At some point, when money is less of an issue, I will come back and spend a month on a writer’s retreat. I know I can get some great work done here. But I may turn into Hermit Mountain Woman and never go back to civilization.

We ate dinner at Applebee’s in Carson City, Nevada and drove as far as Sparks before stopping for the night. We only drove about 360 miles today, but it was worth taking an extra day to get home.

We stayed at a nice hotel in Sparks, but evidently they thought we were handicapped (I swear, I never mentioned “brain surgery” in any way). We got the room with the special handle on the tub, the peephole in the middle of the door, and stainless steel handles EVERYWHERE! Oh well, it was clean and certainly easy to move around in.

Tomorrow – Salt Lake City.

Lights Out

2005-06-02T00:29:00.000-04:00

First thing this morning, I called both our Michigan doctors and updated them on our visit to UCSF yesterday. I told them that unless they could come up with a really good reason for us to stay here, we were coming home. No good reasons to stay were forthcoming.

I spent most of the day doing book things. Talked to Martha at Trafalgar Square and updated her on the progress of Geoff’s book, and on yesterday’s discussion with Dr. Warson.

I also spoke at length to Geoff, going over edits and changes he wanted made in the final two chapters. The rest of the day was spent making the changes. I just sent them out for him to review. Here’s hoping they’re what he had in mind.

Robert, Bridgette and Cassandra took the Santa Fe to a car wash and washed the worst of the bug patina from it. It was truly disgusting. Then Robert and I reattached the ubiquitous luggage carrier on top. All the laundry is finished, and most of the packing is done. We’re going to do one more “fun” thing before the long drive home – instead of hitting 80 and heading east, we’re going to dip south and go through Yosemite. I’ve never been there. It’s supposed to be beautiful this year.

Paul called today to check up on Robert. How thoughtful. He and his wife were on their way to the airport for a week in Washington, and he wanted to make sure things were ok with us. That really meant a lot.

And now, I hear our Little One who is steadfastly refusing to go to sleep. So, it’s time for all of us to say “good night!”

Just When We Start To Find Our Way Around...

2005-06-01T02:04:00.000-04:00

The drive to the city was interesting, but tension-filled. We were doing fine, time-wise, until we neared Berkley. Then we hit grid-lock. I had to repeatedly visit my “happy place.” (Anywhere but here! Anywhere but here!)

We made it to UCSF, literally, with seconds to spare. I dropped Robert off and then went to park (he and Bridgette had taken the luggage carrier off last night – thinking ahead here, planning for the parking garage). When I got up to the doctor’s office, Robert had just finished with the paperwork.

Remember how Robert's medical records languished for a month in the wrong department? They were mis-directed to Neurology instead of Neurosurgery... Turns out they went to the right place after all. Ah! The irony!

We got in to see the epileptologist, who was absolutely wonderful. He took our concerns seriously, asked a lot of questions, and came up with some suggestions. He agrees that Robert probably won’t be going back to work any time soon, and that there are long-term issues with his speech and memory.

He suggested that we see a neuro-psychologist at home, in Michigan. He said that could help give us an idea of exactly what areas need focusing on, and could also give us a base-line for what functions Robert can and can’t do right now. If we had visited one in the past, for instance, we would be able to compare the two visits and be able to identify what specific areas have lost functionality. It makes sense. He also said that a neuro-psychologist would be a significant step when filing for disability. Ok…

We talked about the whole brain tumor / brain surgery scenario. The doctor said, “If Dr. Berger tells you that you don’t need a brain tumor removed, it’s like your banker telling you that you don’t need to put any more money in your account.” In other words – God Himself makes more mistakes. Everyone we have talked to holds Dr. Berger in the highest regard. That’s fine – If he says Robert doesn’t need surgery, I’m inclined to believe him.

Dr. Warson and I had a good long talk this evening after we got home, discussing plans for his book. (He knows Dr. Berger too, and had nothing but good things to say about him.) We seemed to connect quite well. We threw some different ideas around, and I started to get a feel for what he hopes to do with the project. It should be quite interesting. We have plans to talk more when I get home.

And so, now that we are finally able to navigate the city without desperate calls for map-related guidance, it appears that we will be heading home sooner rather than later. After meeting with the doctor today, we don’t see any reason to stay here.

Robert and Bridgette are going to spend Wednesday packing and getting things ready, while I try to get a day of work in. Then we’ll head out on Thursday. We’re going to swing a bit south and go through Yosemite on our first day. After that, it’s a straight shot east on 80. I, for one, can’t wait!

Back to the City

2005-05-31T13:53:00.000-04:00

Seeing "Madagascar" at the drive-in was fun last night. A short bubble of normalcy in our lives...

Geoff and I spoke for some time this morning, working out details of some of the exercises for the book. I understand that it is pouring down rain there. Should make for fun photography. I told him that the same thing happened during Clinton's book -- we had to do all the pics in 2 days, so it can be done. I'm not sure if he found that encouraging or not.

I got a call early this morning, letting me know that Robert has an appointment with an epileptologist at UCSF later this afternoon (at 2:00 PST). So we will be leaving shortly to drive from Sacramento to San Francisco, in the hopes that someone there will be able to give us some hope for treatment.

I received an e-mail from Dr. Warson too. I'm to call him tonight at 4:00 his time to discuss the new book. It never rains but it pours!

But first: we've got to run and drive to San Francisco. Wish us luck!

Book Work and Blue Poo

2005-05-30T20:53:00.000-04:00

Our hosts left this morning for several days in Simi Valley. ::shudder:: I am struck again and again with how gracious they are to let us stay in their home.

Work Update
Today was actually a productive one. Robert and Cassandra walked to the little park this morning, so the house was quiet and I got work done. I reviewed all the information I have from the publisher for a new book we’ve been discussing, then sent an e-mail to Dr. Warson -- the person who is the driving force behind it.

He is a retired neurosurgeon living in Hawaii, who is a specialist in equestrian-related back injuries. We’ve been e-mailing most of the afternoon, trying to determine a time for me to call him so we can discuss the project, and decide whether or not we want to work together. (He had wonderful things to say about the book I did for Clinton, so it looks quite promising!)

Cassandra took a mega-nap this afternoon, which not only freed me up to do more editing on Geoff’s book, but it allowed Robert and Bridgette to veg out completely. Good thing we brought the "Lord of the Rings" DVD’s with us. That kept them occupied for quite some time.

I had hoped to talk with Geoff this afternoon about his concerns about the final two chapters. I tried for several hours to call him. When I finally got through, I learned that he’s had the kind of day that would be quite comfortable in my life: he was on a flight that was delayed and unable to land in Tampa. So they re-routed it to Orlando, where it was in a holding pattern until it RAN OUT OF GAS! It should go without saying that we decided not to talk about the book tonight. I’ll call him tomorrow morning and we’ll get things squared away.

Feed Baby At Own Risk
We’ve had to establish a few ground rules during our stay here. One of them involves the plentiful abundance of the best strawberries and black cherries I’ve ever had. Linda really stocked up on fresh fruit. Since it won’t keep until they get back, we've all been really enjoying the produce. Bridgette says she’s never in her life had all the strawberries she could eat… and then some. We eat them at nearly every meal. Scrumptious.

We’ve had to ration our little fruit bat, however. Cassandra would eat every speck of fruit by herself, if you’d let her. And the other day, someone didn’t cut her off from the black cherries at a reasonable time. Mom, of course, got the fabulous diaper full of (I kid you not) BLUE poo. And that was the end of the unlimited fruit supply. From now on, whoever lets Cassandra eat to her heart’s content must deal with the consequences. Good Lord!

News From the Home Front
I talked to Melanie today. Evidently the dogs are feeling our absence. Digory and Bogie got in a rather boisterous fight this morning. Dig always gets a little twitchy when we’re gone any length of time.

Sheila says that they will be haying this week. Strangely, Bridgette doesn’t feel badly about us not being there to help. Hmmmm…. Frankly, I’d rather hay all day every day for a month, if I knew that Robert would be ok, and that our bills would somehow be paid. Funny how things are.

My mom told me that Uncle Gary and Aunt Gloria announced in church yesterday that Robert hadn’t had his scheduled brain surgery. He has been on the church’s prayer list. The entire congregation stood and applauded. I don’t know. Maybe I should just accept that he’s healed, call it quits and head home. But I just don’t feel that he’s been given a clean bill of health. It’s more like a “I don’t know what the problem is, but I don’t think it’s a tumor, so I’m done with you” kind of thing. And that doesn’t exactly fill me with warm fuzzies.

My dad continues to improve after his knee replacement. He had a 110 degree range of motion today, so he should be able to go home soon.

Taking a Break
Since the entire country is taking a break today, we will too. Robert, Bridgette and Cassandra went out grocery shopping this afternoon while I worked on the edit. (Among other things, we desperately needed coffee. Desperately. Needed.)

Tonight, it’s pizza and a movie. I’ll take time out from the edit and we’re going to go to a nearby drive-in to see “Madagascar.” Should be fun. And right now, I could use a bit of fun. But till then, it’s back to the book…

Laundry Sunday

2005-05-30T01:53:00.000-04:00

Coming to the end of a quiet Sunday. We did about 20 loads of laundry throughout the course of the day. (Did we really bring ALL THAT?)

I'm making myself as useful as possible. Last night, I logged onto Karen's dad's wireless network and promptly crashed his system. So he spent the evening re-installing the driver and doing other, unplanned, unexpected, and un-fun things. I'm sure he was thrilled.

I don't know how I did it. My computer and every other computer in the house worked just fine. Robert said it had something to do with my computer being a Mac and bumping itself to the front of the line, and claiming Jim's IP address. I really don't know. But I feel TERRIBLE!

Linda went to a local market and bought some of the best fresh strawberries on the planet. We had fresh strawberries on homemade pancakes for breakfast. Yum!

Robert and Bridgette played outside with Cassandra, blowing bubbles until nearly everyone was sunburnt and hyperventilating. Later this afternoon, the three of them went to Happy Park (as opposed to Melancholy Park or – better yet – Acute Depression Park). Cassandra played on the swings and rode the slides. She had a ball.

I got half a chapter of Geoff’s book edited today. Geoff sent a short e-mail saying he has “some questions and concerns” about the final two chapters. Which strikes terror into my heart. He hadn’t had a chance to look at either chapter before we left. But Mandy, the photographer, is scheduled to begin shooting the illustrations for the book on Tuesday.

Geoff won’t be available until tomorrow. I’ll call him tomorrow evening to see what his concerns are. Scary, scary stuff.

Jim and Linda leave early tomorrow morning for a shoot he has scheduled in Simi Valley. We SO appreciate them letting us stay here while we sort things out (and for not kicking us out when we wreak electronic havoc). I’m hoping that – at the very least – I can get some work done in the next few days. And maybe (just maybe) we’ll hear something concrete about Robert’s case that will make this whole trip meaningful.

A Day of Rest

2005-05-28T23:06:00.000-04:00

We had a wonderful, restful sleep last night. Cassandra ended up with her body on the floor and her head on her mattress, but she slept soundly, so who’s to say that’s wrong?

Robert, Cassandra and I got up this morning and went to church with Jim. Linda wasn’t feeling well, and Bridgette slept in.

They had a contemporary song service in church – a drum set, keyboard, several guitars and some decent song leaders. The homily was interesting. It has to be the first time I’ve ever heard the words “You suck!” spoken from the pulpit. But the speaker had a good message (he used a championship basketball team as an apt analogy for the Christian life) and the people were pretty friendly. Cassandra was the only little kid in Cradle Roll, but that didn’t stop the leader from going through the whole lesson – just for her. She was thrilled!

Jim was head elder today, so he stayed for second service. Robert, Cassandra and I came back home, however. Bridgette was up by then and we fended for ourselves for lunch. We don’t want to be in the way and expect our hosts to feed us. But then Jim called and said he had invited some others over, and was making a spaghetti dinner.

Of course, we can always eat. So we did.

We had a wonderful, relaxing day. Bridgette, Cassandra, Linda and I all took our respective naps. Robert watched “The Conscientious Objector,” the Desmond Doss story that Jim’s brother Jeff was instrumental in making. We all just kicked back. Tomorrow, I’ll try to get some work done, but today it was nice to go: Aahhhh!

Out of the Frying Pan…

2005-05-28T00:04:00.000-04:00

You Can Check Out Any Time You Want, But… You Know the Rest

We got up this morning, were packed and checked out by 10:45.

Before we left, I got a call on my cell phone from Dr. Rogers’ office. When her secretary found out that we were still in the hotel, she offered to call back on the hotel phone so it didn’t eat up my phone minutes. Now that’s true consideration -- something that is increasingly rare in doctor’s offices these days, I’m finding.

Dr. Rogers is trying to find someone out here who will agree to look at Robert on short notice. It would be nice if we could get some answers before we go home.

She understands our situation completely. While we’re thrilled beyond words that Robert doesn’t require surgery to remove his tumor, we are still left with the question of what to do to stop his seizures. She is quite empathetic about the amount of sleep Robert requires in order to stay seizure-free. And she also understands that because of our insurance situation, we had hoped to be able to find a doctor out here.

Because of Memorial Day Weekend, there is no hope of her finding someone to look at him before next Tuesday. And so, to try to keep what little savings we have, we are going to go stay with some friends further north until we hear whether or not she was successful in finding someone to consider Robert’s case.

Haven’t We Seen This Lilac House Before?

Before we left the city, we planned to swing by the Hard Rock Café at Pier 39 for Bridgette to pick up another t-shirt for a friend of hers. Then we were going to go by Ghirardelli Square for a chocolate fix before heading out. But the shape-shifting streets of San Francisco did their magic again, and it took us forever to get on the right road to take us to Fisherman’s Wharf. I don’t know what the problem was. We found it easily on Wednesday. But today, it quite cleverly hid itself behind a variety of one way streets.

It took us an hour and a half before we finally got to Pier 39. Since parking is not to be believed, we literally let Bridgette off while we drove around the block. She was ready and waiting when we got back around to her. We stopped in the middle of the street to pick her up (Back off, buddy – I’m from Michigan!) and drove on.

By then, it was noon, and I was CRABBY. I just wanted to get out of the city and on the road. Out! Out! Out! So we nixed Ghirardelli Square (OK, I nixed it) and got out of town.

We crossed the Golden Gate Bridge – and it was just gorgeous. There was no fog at all, and we could see the entire bridge. Quite cool. But I was still twitchy from the drive.

I called my friend Paul in Sonoma, and we made plans to meet for lunch. Paul’s a writer / director who has worked on a slew of feature films – some of which you have probably heard of. He’s got a wicked sense of humor, so we get along just fine.

He and his wife Patty came and met us in Sonoma’s city square. We had a delicious picnic lunch from the Sonoma Cheese Factory (MMmmmm!).

While we regaled them with brain surgery stories (Comedy! Drama! Something for the whole family!), Cassandra kept herself occupied on the swings and the slide at the playground. The slide was at least 15 feet tall, and we couldn’t keep her off of it. She’s fearless.

Finally, however, after taking up far too much of their time, we had to hit the road. I hope Paul and Patty know how much we appreciated visiting with them. It certainly was a wonderful time out from my normal occupation of worrying about Robert and Things.

Hurry Up and Wait

We got on I-80 toward Sacramento around 4:30 in the afternoon. So, of course, it was gridlocked with everyone scrambling to get out of Dodge and get into Tahoe. Still – it wasn’t the city. So it wasn’t too bad.

We got directions from the friends we’ll be staying with and then settled down for the ride. We finished the third Harry Potter audio book and started the fourth while we were on the way.

We arrived at Jim and Linda’s around 6:30 or so. They are such good people. Jim is a writer for “The Evidence” TV show, and he’s on deadline with another project. He’s under a lot of stress, time-wise. I can’t believe they’ve invited us to stay here, with all they have to do. We’ll try to stay out of their way… They are so warm and welcoming. Now I know why their daughter and I get along so well.

We were unpacked in no time, and had a scrumptious light dinner of waffles with fresh-picked-this-morning strawberries. Excellent!

And so, we’re here for the next few days, trying to stay productive while waiting to see if we get to go home soon – or what.

Maybe the point of this entire exercise is to teach us patience. Because I HATE to wait! And I’ve been doing a lot of it lately.

At Least Purgatory Has a Pool

2005-05-26T18:41:00.000-04:00

Where am I? Why is it so warm? And what am I doing in this handbasket?
I’ve read accounts of workhorses that walked in an endless circle day in and day out, turning the giant grindstone of old-fashioned mills. The horses got so used to going around in circles that they didn’t know how to do anything else.

Even after retirement, if they were turned out to pasture, they would stay in the same small area and walk a perfectly circular path that was the same dimensions as their path at work. It’s not that they didn’t have alternatives. They just didn’t know what those alternatives were.

I never understood that mentality. But it’s all becoming clear to me now.

Today we had thought of checking out. But there was the possibility that one of our docs from Michigan might be able to connect with someone from UCSF. If they succeeded in getting us an appointment with someone, we reasoned, we’d better be here to be able to make it.

Dr. Ward seems to think that our next step is to see an epileptologist. But he doesn’t personally know of any out here. He advised me to go online and look up the contact information for an epileptologist at UCSF, and then call him, explain our situation, and see if we could get an appointment.

A friend of mine said, “Does he know how doctor’s offices work?” My thoughts exactly. I just couldn’t see a specialist giving me the time of day if, instead of going through my doctor, I called him personally. Especially when one of their own has already bid us “adieu.”

Maybe I’m being too wimpy. I could go into Mamma Tiger mode, if I have to. But it takes so much energy, and I just can’t call any of it up at the moment.

We are still waiting to hear from Dr. Rogers. The people at Henry Ford Hospital have been wonderful. They are all taking the situation quite seriously. But even if they succeed in finding someone who will see Robert, review his case and suggest a course of action, since it is Memorial Day weekend – the earliest we could see someone would be Tuesday.

And all I can hear is “ka-ching!”

After straddling the “do we check out or don’t we?” line most of the morning, we decided to wait one more day for news. None came. So tomorrow we’re going to do something – even if it’s wrong.

Tomorrow we’re going to check out (scary, because if we DO have to come back to UCSF, we won’t have our wonderful daily rate here, and there’s nowhere else to stay). We’re going to visit my friend Karen’s parents near Sacramento and stay a few days with them. If something comes up, and a doctor here will see Robert, we’ll figure out what to do then. But in all probability, we’ll be headed home next week some time.

My friend Stacey was all set to fly out and stay with some of her friends near Sacramento this weekend and spend some time with us. (She said she didn’t want to just lie around the house, however. That, of course, is my fondest dream at the moment.) But when we compared where her friends live and where our friends live, we’d be about an hour and a half apart. That’s just not practical. We’ll miss seeing her. It would have been fun. But maybe I’ll get my one boring day after all!

I’ll Take ‘Anti-Depressants’ for 400, Alex
I talked to my dad, who is recuperating in the hospital after having a complete knee replacement yesterday. He’s in a lot of pain, but not as much as before the surgery, I gather.

Yesterday, going over the Golden Gate Bridge, Bridgette and I came up with a great new combination reality / game show: Self-Medication Jeopardy. Contestants would have legitimate injuries and would introduce themselves, along with their drug of choice, at the beginning of the show. Throughout the show, when they hit the button to ding in their response, they’d get dosed at the same time.

* “Hi, I’m Connie. I have a separated shoulder and a fractured ulna. I’ll be using morphine tonight.”

* “I’m Sean. I’m from Montana. I have a deviated septum and a hiatal hernia. I’ve opted for codeine this evening.”

* “Hello. I’m Vashti. I suffer from migraines and acute depression. I considered Imitrex, but decided to go with Zoloft for this episode.”

Obviously, the longer the show lasted, the more riveting it would become. Imagine what you could charge for advertising. Imagine the companies that would advertise!

Ding! Ding! Ding! Ding! No pushing the button until Alex has finished reading the question.

By the end, the contestants would be totally looped: “What is … the large purple kangaroo… doing behind me?” “Woo-Hoo! The Daily Double, baby! Hit me again!”

I’d watch.

Anyway, the reason I bring this all up is because, when I called Dad, he had just pushed the Magic Button. He’d have been a prime candidate for the show. ☺

Or Was This Just a Cosmic Burp?
I tell Robert several times a day that I’m not upset that he didn’t have surgery. It’s true. What upsets me is not knowing what to do now.

Since we were tethered to the hotel, waiting for news, we hung out at the pool all morning. I may feel like an old workhorse, walking the same endless circles and getting nowhere, but there’s no reason this workhorse can’t laze in the pool on occasion.

So here I was: the sun, the water, my husband walking and talking… I’m in a beautiful city on a gorgeous California day. And all I could think about was the towering amount of work I have to do, and wishing I were back home in dreary, gray Michigan. The same old circle I’ve walked a thousand times in the past few days…

We’re going to put the luggage rack back on the truck this afternoon and pack up in the morning. I’m sure, someday, we’ll look back on this and be able to find a reason for it. Really. I’m an “Intelligent Design” proponent. There HAS to be a reason – right?

At this point, the only moral I’m getting from this story is: When purgatory has a pool, swim.

Rubbernecken Sightseern

2005-05-25T20:46:00.000-04:00

Well – today should have been the reason why we came out here in the first place. Robert was scheduled for surgery bright and early this morning. But when Dr. Berger called us last night to say he didn’t think the tumor needed removing, that put a very interesting wrench in the works.

The Great E-Mail Erasure

The day began with the Great E-Mail Erasure. I’ve been unable to use my regular mail program (with all the addresses in my address book readily available) since we got to the hotel. I can access my mail just fine. But I have to go through my provider’s extremely cumbersome mail process in order to send anything. Otherwise it just sits in my “Out” box and triggers annoying messages telling me that it hasn’t gone anywhere yet.

I e-mailed our provider with questions about the problem on Monday. I got a nice response back yesterday, telling me how “easy” it would be to fix the problem. Just 4 easy steps. That aren’t possible on my Mac. Robert – the computer guru – tried. The only result was losing everything in my “In” box.

So I called our provider to say that the 60 messages I had received last night were no longer there, and that I hadn’t seen any of them yet. My whole account was essentially wiped clean. “That’s the right way to try to fix the problem,” I was told. But it didn’t fix the problem. And all the messages are now floating in the ether somewhere.

I had to send out an e-mail on their tedious program, individually cutting and pasting everyone’s address from my address book, telling them that if they sent me anything in the past 24 hours that I hadn’t yet responded to, to please re-send it. Good grief!

I’ve tried responding to a few friends’ e-mails, but if I take too long to compose my reply, my login times out – which I don’t know until I try to send the thing, and it goes to join its 60 brethren from this morning.

I know: whine, whine, whine…

Thoughts on Docs

First thing this morning, I called Dr. Ward (Robert’s neurologist) and Dr. Rogers (a neurology specialist that he consults with at Henry Ford Hospital, who recommended Dr. Berger in the first place). Dr. Rogers was involved in an all day conference, and won’t be available to talk to us until tomorrow. But one of the neuro-oncologists that works with her, who is familiar with our case couldn’t believe what’s happening. “Join the club,” I thought.

Dr. Ward was wonderful. He called back & gave us his cell number. He’s trying to contact a neurologist or an epileptologist at UCSF (since we’re already in the neighborhood!) who would be willing to take a look at Robert. If surgery for tumor removal isn’t the answer, it certainly would be nice to know what IS.

I told Dr. Ward about Dr. Berger’s comment last night (made after meeting with Robert for less than half an hour, while Cassandra, another doctor and I were all in the room too) that he saw no reason why Robert couldn’t go back to work. If he hadn’t had a seizure in 4 months, he said, things were clearly under control. He didn’t seem to understand the strict regimen that keeps Robert seizure-free, including about 12 hours of sleep a day, and very little time on the computer.

Dr. Ward’s response: The doctor here obviously didn’t spend enough time reviewing Robert’s file. He agrees with me that Robert is not anywhere near ready to return to work.

He promised to get in touch with me within the next 24 hours, so we don’t just spin our wheels expensively here, waiting for nothing to happen.

In addition to the notes from people I know, I got a very nice e-mail of support from a friend of Paula’s who has learned about our situation. She was diagnosed with Hodgkin’s disease in 2000, and underwent a series of the usual, horrific treatments for lymphoma. She reiterated what my friends all keep telling me: don’t let the docs just make arbitrary decisions that affect your life. You owe it to yourself to push for answers.

Playing Tourist

Since UCSF didn’t want to see us, we played tourist for a bit today. We went to Fisherman’s Wharf, rubbernecked at some of the beautiful Victorian townhouses, and Bridgette did a little shopping. A Bon Jovi video played while ate at the Hard Rock Café. My life is complete.

We also drove over the Golden Gate Bridge (even though it was fogged in) just to say we’d done it. And we drove down Lombard Street – the twistiest street in America – for the same reason.

We came back to the hotel and everyone laid down for a nap. Cassandra didn’t think she needed one, but I am more stubborn than she is. I won. She’s been sleeping for the past 2 hours.

I asked at the front desk to see if there would be a penalty if we checked out early. If we do, we’ll incur a higher daily rate (an extra $45 a day). But if the docs here are really just washing their hands of us and sending us home, there is no reason to stay.

Where Do We Go From Here?

My friend Stacey, in Columbus, e-mailed us to say that if we were staying for a bit to do the vacation thing before we headed home, she might fly out and join us over the weekend. That would be fun. At least she and Bridgette would have a blast.

(Stacey does “power vacations.” When she went on an Alaska cruise with us, Robert and I and another friend of ours each planned one thing to do at each port of call. Stacey looked at the schedule and reasoned that if the boat pulled in at 8 a.m., by 8:15, she’d better be doing something. She would plan out the whole day. When one thing was scheduled to end, she’d slot something else in right afterwards. That’s great – it’s just exhausting to watch her take a vacation. Me – I like to “vacate.” That’s especially true right now.)

Some friends have invited us to stay a few days with them in Sacramento. I’m going to call them tomorrow, once I’ve had a chance to talk with our docs from Michigan again. Maybe that’s what we’ll do – stay a day or two with them, then head for home.

While part of me can’t wait to get back home, the rest of me is really, REALLY tired. I thought I’d have several weeks of doing nothing except sitting around a hotel room and helping Robert recover before we had to get in the car again. Still, we have to make a decision soon. The book edit needs to get finished. If I can’t do it while keeping Robert company as he recuperates, I’d just as soon do it in the comfort of my own home, where I can obsess about What Will Happen Next at my leisure.

My father had a complete knee replacement today. Mom says he’s in a lot of pain right now, but that is to be expected. The surgery itself went well. It seems that God thought one major surgery per family per day was all that was required. It’s not that I’m ungrateful. I’m just a bit confused.

Breaking News

2005-05-25T01:53:00.000-04:00

And Now For Something Completely Different…

Tomorrow’s surgery has been cancelled due to lack of interest. Dr. Berger says that after reviewing the MRI scans that Robert had done tonight, he sees no significant change in the tumor area since the original post-op scans done nine years ago.

I asked him: what about the seizures?

He said that the surgery would have only been for tumor removal anyway. “Surgery to locate and remove a seizure focus is a completely different sort of procedure,” he informed me. He also said that he wouldn’t have done that to Robert tomorrow. It sounds like Find the Seizure Center is a fairly imprecise sort of game to play. They only play it in cases of uncontrolled seizures. Hmmm…

Which leads me to speculate wildly –

What if Robert’s medical records had not languished for a month less than 10 yards away from where they should have been? If the doctor had reviewed our case on March 3, when the records arrived, Robert would have been seizure-free for barely a month. He also would have still been having significant problems with his memory, coordination and reasoning. They probably would have done surgery without much questioning – and may have opened up his head only to realize they didn’t need to!

Now, however, since he has been seizure-free for four months, his seizures are considered “under control.” I told the doctor that is the result of an extremely strict regimented schedule. He said that he saw no reason that Robert can’t go back to work. Well, I can – the cause-and-effect reasoning still ain’t what it should be. And spending any time at all on the computer just makes it worse.

I asked Dr. Berger what he recommended we should do now. He said we can go home.

!!!!

I am at a loss. Don’t get me wrong – I’m thrilled that it appears our prayers have been answered and Robert doesn’t need to have surgery. But I feel quite discombobulated. Now, suddenly, there is a whole new set of worries (mostly financial, with a few pesky concerns about the root cause of the seizures still not being settled) to occupy my mind.

First thing in the morning, I am going to call Dr. Ward, our neurologist in Michigan. He knows Robert better than any other doctor. And he thinks Robert qualifies for disability. In fact, he’s the one who strongly suggested we pursue the matter. I’m going to ask him for his advice. Because it appears that we’ve made a lengthy, costly, unnecessary trip. Which is a good thing. I think.

The Long Dark Tea-Time of the Hole

2005-05-25T01:02:00.000-04:00

Life just gets curiouser and curiouser.

We arrived at UCSF on time this morning. Not that it was easy, mind you, or without the odd wrong turn here and there. But the important thing is that we made it. And we fit in the parking garage.

Robert’s first appointment was with admissions. Then he met with the anesthesiologist. That went without incident. Then we went to Neurosurgery. He signed a paper giving his consent to participate in a study on the genetic make-up and DNA mapping of brain tumors. And then we – finally – got to meet Dr. Berger.

That’s when things got interesting.

Because Dr. Berger was looking at Robert’s MRI scans and, in his words, was “unimpressed” with what he saw. In other words, he didn’t see any significant reason for surgery. He doesn’t see any noticeable progression in the scans or additional tumor growth since Robert’s surgery in 1996. Whaddaya know?

He also said he was a bit perplexed with UCLA doing the PET DOPA scan – according to him, they don’t use such scans as a basis for recommending surgery. And he seemed to share my feelings that Robert’s series of horrible seizures in January were due to mis-medication rather than tumor recurrence.

Hmmmmm.

He called in another doctor – a world–renowned neuro-oncologist who specializes in low-grade tumors. Together they reviewed the scans. They were both leery of jumping into surgery, and both continued to question the validity of the PET DOPA.

And so, we are up in the air. Dr. Berger cancelled Robert’s MSI (the one we missed yesterday, remember? It appears it may not have been necessary anyway). He scheduled a “flare” to be added to the MRI Robert had later today. He will review the films tonight and will call us with his recommendation.

Perhaps this whole trip was unnecessary. Staggering.

What Does It All Mean? Or: Now What?
Which raises the question: Huh?

If Robert DOESN”T need surgery (and I certainly hope he doesn’t), for what possible reason did everything work out to bring us out here? I know he’s on many, many prayer lists, and I really believe that counts for something. It would be fabulous if his tumor has not regrown, if UCLA simply screwed the diagnosis up, in addition to screwing his medication and his mind up, and if we don’t need to go through the tedious, scary recovery process.

But that also means that the seizures will – more than likely – continue. The one great hope of this surgery was that the doctor would be able to locate the seizure center and remove it. And so, now what?

He still cannot return to work. His memory is still not what it should be. We’ll still be without insurance and – now – it appears likely that disability won’t be an option. Not that I want my husband “disabled.” But not having surgery raises at least as many questions as having the procedure…

We went back to the hotel and everyone took a nap. Bridgette and Cassandra were still sleeping when we left to come back to UCSF for the final test of the day – the aforementioned MRI with flare. Still, things are proceeding as if the surgery is still a go. They shaved seven quarter-sized spots on Robert’s head and put these green, sponge-like “fiduciary” things on him. They look for all the world like Lifesavers candy stuck in place. If he doesn’t have the surgery, he’s going to have a gawd-awful haircut to explain.

Vexed In the City

2005-05-24T01:47:00.000-04:00

Ok, the day started out just fine. We ate a wonderful (complimentary!) breakfast: fresh waffles, lots of sausages & meats for Bridgette, scrambled eggs, croissants, lots of good breads, fried potatoes, gravy, oatmeal, cereal, fresh fruit, etc...

I made a shopping list and left it off at the front desk. What a bargain! Food for about a week ran just over $60. I didn’t have to waste time shopping in a store that I was unfamiliar with. And – better yet – the hotel has an account with the store and saved a bundle. Almost $20 off. I wouldn’t have gotten the same discount if I’d done it myself. Cool!

On the Heels of Fat, Deaf People

A few glitches to our room. Bridgette’s pull out sofa bed tilts downward at a distressing angle, putting her feet above her head. And when you turn the TV on, it comes on at FULL VOLUME and blasts everyone’s eardrums. (My friend Karen, who is – literally – deaf in one ear and can’t hear out of the other, would be thrilled.)

Two maintenance guys came and assessed the problem. Evidently the last people who stayed in our room were from Arkansas, though I don’t know why that is relevant. They had a kid who liked to play video games. They asked the hotel to “bump up the volume” of the TV so their kid (and everyone else in a 5 block radius) could hear his game. The volume was stuck at max and the system to our room needed reprogramming.

As for Bridgette’s bed, it seems that the people who were here last were also rather large. The best we can do to fix the bed is either a.) move things so the head is at the foot, and vice versa, b.) put pillows underneath the mattress to prop it up or c.) do some funky thing with shims under the bed legs. We’ve opted for option B.

I told the maintenance men that it appeared we were following in the footsteps of some fat, deaf people with a spoiled brat. He cracked up. “I never said that!” he said. But he didn’t say I was wrong, either.

Yahoo Don’t Know San Francisco

Since Robert’s first appointment was for 1:00, we wanted to give ourselves plenty of time to find our way to UCSF. So we left at 11:30. Everyone says it takes half an hour to get from our hotel to the university. We figured we had plenty of time.

And so, armed with directions straight from Yahoo, the intrepid adventurers started out. We left Baby Girl in the hotel with “Aunt B.” We didn’t know how long Robert’s appointments would take (I still can’t access the university mail system), and figured that Cassandra needed her nap if we wanted to keep our sanity.

We drove until we parted company with the plausibility of the directions Robert had written. Since he, in his infinite wisdom, had trusted said directions and had left all our Triptiks and other map-like objects at the hotel, we fuddled around a bit before pulling over and calling UCSF.

[Part of me was ranting: What was I thinking, leaving the map thing to the man whose brain made this trip necessary?! The other part was trying to placate me with the reminder that he was usually so reliable with directional things… Both of us worked very hard to not snip at each other. I’m not sure how successful we were.]

Of course Dr. Berger’s assistant didn’t answer her phone. Why should today be any different than any other? But, after some waiting and wasting of time, I got the switchboard. I told the woman our location, which she typed into Yahoo. I diligently wrote down her instructions, which included “Turn onto Merchant Street. Take Merchant to Market. Turn right on Market…” I repeated them back to her. She verified them. With 45 minutes remaining, we were on our way again.

We saw Merchant street – a little one-way deal – almost immediately. The entrance was nearly obscured by a parked van, and I missed the turn. We noted which way it ran, and I took the next street that ran the same way. I reasoned that since Market could be turned left or right on, it must be a larger street (which I later learned was correct). Therefore, I figured, if we took a street that paralleled Merchant, we should run into Market.

After going several blocks and not finding Market, we decided that I must have been terribly, terribly wrong. So, we went BACK to where we started from, determined to follow the directions exactly. Which would have worked, except…

Merchant Street runs exactly one block. At no time does it ever come anywhere near Market. I know. I drove it.

So we called UCSF again. After several minutes on hold, we got the switchboard. At first, the woman wasn’t sure she could help us. (“I can’t spend time just giving you directions while five other people are on hold.” I don’t see why not. I’ve spent nearly 20 minutes on hold before… But I digress.) I told her our location, she punched it into (you guessed it) Yahoo, and a totally different set of directions came up.

With fifteen minutes before Robert’s tests were scheduled to begin, we wrote the new and improved directions down and set out again.

And – to no one’s surprise – these directions were no more accurate than the previous ones. The road we were on was supposed to “turn into First Street.” It did not. First Street was a hop, skip, jump and jog (not to mention 4 very traffic-filled lanes) away. But we DID find Market Street. A major thoroughfare. Which, as I may have mentioned, Merchant comes nowhere near.

Thanks to our three sets of directions, and UCSF parking signs, we finally arrived at the UCSF parking garage at about 1:05. But…

The garage ceiling clearance was 6’ 7”. Of course, our luggage carrier makes the Santa Fe significantly taller than that – a fact we discovered only after we had turned off the street into the garage entrance.

With no other option (aside from flooring it and removing the luggage carrier from the equation), I backed up – much to the dismay of the driver of the car behind me.

We drove around for a bit, exploring various venues (I wonder how serious they are about their “Tow Away Zones…?”). Finally, we drove into a residential section and stole someone’s personal parking space – parked at a 90 degree angle on a 45 degree incline.

We got to Neurosurgery at almost 2:00. Eventually, Dr. Berger’s assistant was located and came to meet us. We were too late, she told us, for our scheduled appointment – an MSI which would take 3 hours.

She was not surprised to hear of our difficulty accessing the university mail system. It seems that’s been the norm. So she printed off Robert’s new and improved schedule (we’ll be at the hospital from 8:00 a.m. to 6:30 p.m. tomorrow), and we left!

We had little difficulty getting home (Thank God!). I got a little cranky about the need for having reliable maps in the car when going strange, new places. But we got through it.

The weird thing is – everyone warned me about driving these streets. Several of my friends who have lived in this part of the world were quite concerned about it. But, for some reason, I don’t mind it. I just know that if I’d had the same day as today in L.A., I’d either be in divorce court or in jail. I’d be so crabby, even I wouldn’t want to be around me. But here, the driving is kind of fun. Go figure. The roads remind me a lot of the back streets in my hometown. True, the traffic isn’t comparable, but the twists and turns are really quite similar. Maybe part of it is driving my own car instead of an unfamiliar rental. Who knows?

Unexpected Activity
When we got back to the hotel, the first thing we did was remove the luggage carrier from the top of the truck. Should be fun putting the thing on again without Robert’s assistance. He won’t be able to lift any weight after the surgery, so it will be up to Bridgette and me. Maybe we’ll merit a spot on “America’s Funniest Videos…”

Cassandra was still napping. She napped through the maintenance guys fixing the television and housecleaning tidying up the room!

Bridgette said that Melanie had called. Discover has called our house in Michigan several times about “unexpected activity” on the card. I called them and verified the charges. It’s nice to know that someone cares.

We were going to make pasta for supper, but the hotel had Pasta Night for its Hospitality Hour. So they fed us. Great! I could get used to this.

We are all going to go to UCSF tomorrow – Bridgette wants to get out of the hotel room and see a little bit of the city. Heaven knows she’d be left alone with Cassandra ALL DAY if she didn’t come. She’s doing really well with her, but I think the idea of an all day thing is a bit daunting.

I need to call Karen’s mom, too. Karen said she’d like to come down on Wednesday and help with moral support while Robert’s in surgery. How very, very thoughtful. He’s scheduled for surgery at 6:00 a.m. I don’t even want to THINK about what time we’ll have to get up. One day at a time…

The Last Leg

2005-05-23T00:24:00.000-04:00

Day 4 – 436 miles (2741 total)

Windmills and Tumbleweeds

We’re here!

We left by 8:00 this morning (our continental breakfast consisted of freaky gray, undrinkable coffee, really good orange / guava juice and inedible pre-packaged sweetrolls. Bleah!). Got a good start and didn’t hit any significant construction.

Bridgette drove the first part of the day so she wouldn’t have to drive in San Francisco.

She is fascinated with tumbleweeds. One rolled across the highway and she went nuts. Now her trip / day / life is complete. If I’d only known how easy she would be to impress! Her fondest wish at this point is to bring one home. We’re talking about strapping one to the back of the Santa Fe like a bunny tail. Or tying a rope to one and dragging it behind us. Me and my boulders; Bridgette and her tumbleweeds.

We passed Edwards Air Force Base and a wind farm – thousands of giant windmills all whirling on the side of the mountain. It was impressive, and nearly hypnotic. After so many miles of nothing moving but trains and tumbleweeds, it was almost impossible to take your eyes off the blades.

A Room With A View
We got into the Residence Inn around 4:30 p.m. Yes, we are in the $$$ hotel. But sometimes you get what you pay for. Since my friend Stacey pulled some strings, we are staying in a very nice room / suite / studio that’s about 300 square feet. You can see the Bay from here.

Bridgette has a pull-out sofa bed in the "living room" while we have our own "bedroom" area. There is also a nice bathroom, a small powder room, a small work area and a full kitchen, complete with dishes, cooking utensils, a dishwasher and garbage disposal.

We have a complimentary hot breakfast in the morning, complimentary high-speed internet access, a nice pool & lots of other extras. They'll even go out and get my groceries for free, if I give them a list. Room service provides very good food at very reasonable prices (we all had more than we could eat tonight for less than $10 per person).

Thanks to Stacey (and her friend who pulled the strings), we're paying about a third of this room’s normal going rate. So -- while it will be very expensive for a month, it could be much, much worse! At least we have a place to stay. And we may still find a less pricey option.

On our way here, Cassandra has learned a few new things. She will use the potty about 2 or 3 times a day. I got her a book at the Grand Canyon yesterday that shows a lot of different woodland creatures and tells you how to identify their tracks and things. She loves it. She will now “howl” like a wolf, “howl” and “yip, yip, yip” like a coyote and “dit-dit-dit-dit” like a woodpecker. Tonight, Bridgette was teaching her to cross her arms and nod like “I Dream of Jeanie.” I’m so proud.

We checked our e-mail. There was one from Dr. Berger’s assistant, but UCLA is using a new encrypted mail service and it won’t recognize my password. It works at home, but not here. She had called and left a message on my cell phone, however. Robert's first appointment is at 1:00 Monday afternoon. I don't know much more than that. He sure is functioning well. God is good.

We’ll all get a good night’s sleep tonight and – hopefully – sleep in tomorrow. More news to come.

A Grand Day Out

2005-05-22T02:26:00.000-04:00

Day 3 – 699 (2305)

We got up and on the road at a decent time this morning. We crossed another time zone and reached the Painted Desert / Petrified Forest National Park around 8:45 a.m. When we got out of the car, the first thing we noticed was the perfume in the air. All the desert is in bloom and the air is intoxicating. I could just stand and smell it forever.

The woman who was at the desk of the welcome center told Robert that she has been there for three years, but she’s never seen the flowers before. Evidently this was a wetter spring than normal and things are blooming that haven’t flowered in years. It’s stunning.

Robert got a National Parks card. For $50, the card will admit us into any national park in the country for a year. It almost paid for itself today. Admission to this park was $10 per carload, and the Grand Canyon (later in the day) was $20. Since we plan on Yosemite and possibly some others parks while we’re “in the area,” I think it was a good purchase.

We set out on the Quick Tour of the park. You drive through it, with various stops and lookout points along the way. The last time I saw the Painted Desert, I flew over it on the way back from L.A. The only thing I really remember from the last time I saw it from the ground is blazing hot sun and miles of sand.

Today, the desert was breathtaking. We were there in the early morning, when the colors were at their most surreal. We saw striations of blue, purple, rose, orange, white, teal, turquoise and red. It was beyond beautiful. And every time we left the car, we could smell that wonderful perfume. Bridgette laughed at me for making a big deal about how the air smelled, but – really – it was remarkable.

Since we were getting in and out of our car so often, we let Cassandra ride up front on Daddy’s lap for the trip through the park. Everyone was happy. We were seeing amazing, spectacular sights, and the Little One was out of the car seat.

One of my few memories of the Petrified Forest is because of a picture my parents took the last time we were here. I’m about 4 or 5 and sitting on a monstrously huge petrified tree trunk. Today I took a picture of Cassandra doing the same thing. She won’t remember it, but maybe in 30 years she can do the same thing with her kid. ☺

We spent about 2 hours in the park. We stopped and ate a quick lunch before getting back on the road (after strapping an unhappy Cassandra back in her seat).

We passed lot after lot full of petrified wood for sale. Make bookends! Paperweights! Trinkets and mementos! It was nauseating.

We drove on and made it to the Grand Canyon in the early afternoon. It was extremely HOT! I put Cassandra’s little sunbonnet on, and was really glad I did. Everyone got some sun, but Bridgette’s shoulders got fried. Extra crispy. Poor girl.

The Canyon has changed since I was there last (when I was about 12). Oh, it’s still the same awe-inspiring natural wonder, but the park around it has undergone quite the transformation. There is a new visitor’s center, and they’ve paved and fenced off a significant portion of the South Rim so you can walk along it and enjoy spectacular scenic vistas. The problem is parking. There is only one place to park for a short period of time (1 hour). If you want to park longer, you have to go to the main parking lot (Shops! Food! Trinkets and Mementos!) and take a tram. I suppose it’s a better set up, but the whole “Grand Canyon Village” motif annoyed a bit. Americans exploit everything.

We ate dinner at a really good steakhouse in Kingman, AZ. Then, because we were feeling good, and because I was a little twitchy about getting to our hotel on time tomorrow, we drove on. I’m not sure that was such a good idea. We planned to stop in Barstow (about 200 miles further on), but once we got under way, we realized that we were committed. There is NOTHING between Kingman and Barstow.

Then, once we arrived in Barstow, we couldn’t find a hotel that had a vacancy. Really. For some unknown reason, lots of people are here. I don’t know why – there is nothing here!

After stopping at about 6 hotels, and finding only one with a room (smoking. No thanks!), we stopped at an Executive Inn. It sounds swankier than it is, but the room is clean, fairly spacious, equipped with a fridge AND enough towels. Ahhh! We are all just BEAT.

Tomorrow, if all goes well, we’ll be in San Francisco. The trip will be over and the journey will begin.

Gallup and Whoa

2005-05-21T02:10:00.000-04:00

Day 2 – 780 miles (1606 total)

“Just Go Around”
Cassandra slept with Robert and me for the first part of last night. She was wound up and out of her element, and not at all comfortable with sleeping in a strange room. Around 2:00 a.m., however, she blearily woke up. I asked her if she wanted to go to her own bed. She said she did. She slept the rest of the night on her own mattress. What a sweetie.

Today, she told us twice that she needed to “go potty.” She knew what she was talking about, too. Maybe by the time we get home, she’ll be potty trained. One lives in great hopes, as Denise would say.

The Horsch family gets up and about quite early. That was just fine with us. We were on the road by 8:00 and on our way through… Kansas.

Today was the Chamber of Secrets as we traveled the Great Plains. In some little Kansas town which shall remain unnamed (because I don’t know it), we were tooling along at 30 mph behind some poky little white truck. Robert, in his infinite Navigator wisdom suggested I go around it. When I did, it swerved behind us AND PUT ITS FLASHING COP LIGHTS ON!

“Ma’am, the speed limit through town is 30 – not 45,” I was informed. How helpful.

Fortunately for my driving record and my marriage, he let me off with a warning.

Go around. Honestly.

An “H,” But No Lake
We got through Kansas and most of Oklahoma. We stopped at a little gas station to fill up, change the baby and eat lunch. When I asked who I should make the traveler’s check out to, the cashier told me, “Texhoma Grocery. With an ‘H.’”

“The ‘H’ is important,” she said. “People always want to know where our lake is. But that’s in Texoma. I tell them it’s about 4 or 5 hours away.”

“Wish we had a lake,” another cashier said. “The nearest one is, like, 200 miles from here.”

I didn’t have the heart to tell her that we lived within a mile of two lovely lakes, and within 5 miles of the most beautiful Great Lake of all. How can they handle that heat with no water around? I have no idea. Nothing like leaving home to make you appreciate staying home.

It had to be close to 100 out. Very hot. We were quite grateful for the little travel refrigerator my mom and dad lent us for the trip. We’ve got yogurt and cottage cheese, three kinds of regular cheese, pasta salad, strawberries, sandwich meat & condiments, lettuce, veggies and dip. It’s wonderful.

Cassandra has reached the point where she no longer wants to get in the car seat. She wouldn’t mind sitting in a regular seat. But she sure hates her kid carrier by now.

Boulder Fascination
We crossed into Texas and then into New Mexico. The scenery is some of my favorite anywhere. The rocks and dirt are bright, beautiful red. It’s like a landscape from another planet. I just love the enormous boulders and the way the hills are sculpted. I drove everyone nuts pointing out every strange and fantastic formation – especially the ones that involved immense rocks perched impossibly on the tops of mesas.

I’ve been through here before – years ago – but all I remember is miles after mile of sand. It is so green here right now. The desert is full of yellow, white, purple and pink flowers. Spectacular.

We stopped for supper in Albuquerque. We ate at a little place called the Church St. Café that we read about in the AAA Triptik. The restaurant was located in an adobe home that was built in the 1700’s. It served wonderful Mexican food and had excellent wait staff. Mmmmmm!

We knew we had to make Albuquerque by the end of the day. But after supper, we were feeling pretty good, so we drove on until we hit Gallup at 9:30. Not a lot of hotels to choose from out here. We stopped at a rather crumby Howard Johnson’s that was part of a truck stop.

To get a room, I had to go to the convenience store that serviced the truck stop. The Native American woman behind the counter was training another woman on the fine art of checking a patron in. At least that’s what I think – I hope – was the case, because it took FOREVER! We finally got into our room. It was a musty, small, rather dingy affair. With only two towels. And two gray washcloths.

So I trudged back to the truck stop and asked for another towel / washcloth allotment.

“Another one?” The woman seemed skeptical. What was I really up to? What was I trying to pull?

I held my ground. I didn’t think it was unreasonable to expect that every person had his or her own individual shower accoutrements. Clearly, she disagreed with me.

I asked if she would send the things to our room, or if I should wait. I could wait, she told me, but it might take awhile.

Fine.

So I stood patiently, right smack in front of the cash register, blocking the other customers (hey – I got there first!). Amazingly, it really didn’t take long at all for the towel to come. What do you know?

Ahhh, Wichita!

2005-05-20T02:09:00.000-04:00

Day 1 -- 826 miles

Urp Up and Blow Outs!

We left in an early morning drizzle and were on the road just after 7:00. Bridgette was all ready and we got off to a good start.

Hit some rain and a little bit of stormy weather as we headed toward Chicago. I was glad I had gotten new windshield wipers yesterday. The old ones were tatty and battered. They’d have been useless.

Then, things kind of went south. We entered a s-l-o-w construction zone, and I started worrying about our time schedule. Then Cassandra was sick and puked up breakfast all over herself and her car seat – and suddenly our schedule was not the first thing on my mind. Poor kid! And poor Bridgette, in the back seat with her! Cassandra has never been carsick before. Which was really a small comfort as we had to ::ICK!:: clean things up as best we could in the dribbly parking lot of a Dunkin Donuts.

A few hours later, Cassandra decided she’d had enough of the car seat. She called for “Mommy!” I asked her if she was going to be sick again. She said “uh huh,” so we immediately pulled over to the side of the highway. Robert got her out of the car and they wandered along the median while trucks whizzed by.

I remembered being about 4 or 5 years old and going on a trip with my parents when I had a terrible case of the stomach flu. I was sick so often that my dad would just pull off to the side of the road, open both the front and back doors, and create a little privacy stall where I could be sick to my heart’s content. Which sounds all concerned and parental – until you take into consideration that on the way home from vacation, he would announce in stentorian Tour Guide tones, “And coming up on your right, ladies and gentlemen, is ANOTHER place where Ami was sick!” How kind.

Cassandra only had the one incident, however. And it didn’t take her long to figure out that if she said “pook!” we’d pull over and she’d get to get out. Finally I told her, in the most reasonable of voices, that we’d put a blanket over her and if she had to be sick, she could be sick on the blanket and that would be ok. She eventually figured out that saying "pook!" wasn't the magic key to get out of the car, stuck her thumb in her mouth and slept for several hours.

Got stuck behind RIDICULOUS non-moving traffic at the Illinois / Iowa border. Robert decided to navigate by the seat of his pants and had us take a random exit so that we could go somewhere – anywhere! We meandered through a small city with him reasoning out loud, “This goes West, and we want to go West, so it’s fine,” while my Type A personality fumed.

Finally, I pulled off the road and said I wasn’t going one yard further until he got a map and figured out exactly where we were. He did. We weren’t far from a road that took us back to where we wanted to be – and we got back on our highway after the accident or the construction that had brought it to a standstill. ::Heavy sigh::

We’ve brought the first 5 Harry Potter books on CD with us, courtesy of our wonderful library. Today we drove exactly long enough to get through the first one. Hogwarts certainly helps pass the time.

As we were nearing Wichita, we passed a semi that had a tire blow just as we got alongside it. POW! For a moment there, I thought either we’d blown a tire or someone was shooting at us. But since the car continued on the straight and narrow, and since no one inside it died (my heart definitely went into overdrive, however…), we continued on our way.

Horsch Haven
Even with our unexpected construction and carsickness, we pulled in to Paula and Shawn’s place around 8:00. Paula had Fancy out and rode her a bit. Cassandra got a ride, too. Bridgette took a short spin on their 4-wheeler, and we got the grand tour of their beautiful place.

They have made the most wonderful tack room I’ve ever seen – complete with wet bar, TV, DVD, stereo system, lounge chairs and fireplace. Wow! Shawn designed it all himself, and made everything from the oak of a torn down round pen. Amazing.

We took pictures for posterity. Here we are in front of their place: Robert, me, Cassandra, Bridgette and Paula. Tired, but SO glad to be here!

Cassandra had gone through three full outfits AND soaked the car seat. Paula let me use her washing machine to freshen things up, thank heavens. It doesn’t bode well for the next three days, however. I thought I’d packed enough for two weeks. At this rate, I’ll be lucky to have enough clothes for the Little One to get to San Francisco.

They had bought pizza and fed us and then, because it was so late, and tomorrow is a working day for everyone, we went to bed. I feel badly, like I’m crashing at their place and taking advantage of their considerable hospitality. But there isn’t a whole lot we can to do remedy the situation.

Even more boorish – I didn’t have the wonderful “from Coloma” gift I had planned to bring along as a small Thank You For Having Us. It’s perishable, and I knew the place that makes it is closed at the beginning of the week, so I planned to go and pick it up on Tuesday or Wednesday. But NOOooo. They’re open Monday, but closed Tuesday and Wednesday. Yeesh! I’ll send it when we get back home, but it’s not what I’d planned to do…

Today: Wichita. Tomorrow: Albuquerque… at least.

Geriatric Commandos

2005-05-19T02:57:00.000-04:00

Dishes washed. Floors vacuumed. Toys cleaned up. Barn stocked with feed. Fridge cleaned out. Car washed. Bills up to date. Goodbye’s said. Hugs all around.

We’re packed – clothes, books, DVD’s, CD’s and other sundries to last a month. And diapers. Can’t forget the diapers. Everything fit perfectly in the Santa Fe. Rah! The plan is to leave between 6:30 and 7:00 in the morning. We’ll see how that goes.

Karen (and Pepper) came over for supper tonight. She just left. She was with us the last time we did the brain surgery thing. She feels badly that she can’t go along for moral support this time. She’s even from California and very familiar with S.F. But she’s doing her internship for her Master’s with Habitat for Humanity, working on their big project in Benton Harbor this summer. She’s got her plate full. I told her I can’t begrudge her having a life!

Bridgette did a great job packing all of her stuff into the allotted two bags (one carryon and one personal item…). She had a wrench thrown into her works yesterday. For the last few months, her bosses at Family Farm & Fleet, where she has worked for over a year, have known that she may be going with us on this trip. They told her that it was fine if she left – she’d have a job when she came back. One guy even has a little boy who has epileptic seizures. He was very sympathetic and supportive of her going with us to help us out.

A couple of weeks ago, she told me that several women who worked there were fired or let go. She also said that the women who do work there are getting paid significantly less than the men. Which may or may not be true. I wouldn’t know.

Anyway, yesterday, as she was counting her drawer to leave, on the last day she was scheduled to work before we left, her boss told her not to bother coming back when we got back. Just let her go. He said she wasn’t being as productive as she could. Hey – at least she’s not racing the lawnmowers in the parking lot, like I’ve seen the assistant manager doing… I don’t know. It’s too bad.

Robert had a doctor’s appointment with our GP today, so we could get that pre-requisite form filled out. The form that his neurologist wouldn’t fill out. So annoying…

Anyway, in the course of the exam, the doctor had him take his shirt off. Then the following conversation occurred:

Dr.: Are you wearing underwear?
Robert: Uh… yeah.
Dr.: Ok. Go ahead and take your pants off, too.
Me: Do people often answer the underwear question with a “No?”
Dr.: You have no idea. I’ve learned to ask first.
Me & Robert: You’re kidding!
Dr.: Especially some of the older people. Old men, for some reason.

And so, for the rest of the day, I have been unable to shake the unsettling image of geriatric old guys going commando. WHAT ON EARTH? I’m thinking if it’s something that makes a doctor go “Hmmmmm,” it’s just NOT right.

Bleah.

I talked to my editor at Trafalgar Square today. I updated her on Geoff’s book, and we talked a bit about the new project. I told her I thought I’d be able to spend some time thinking about it while we’re in California. She’s going to send me information on the guy I’ll be working with on the project, and I’ll plan on contacting him once I see how Robert’s doing.

Speaking of…

Robert is doing really well! He’s speaking well, remembering fairly well, and generally amazing me. The whole cause-and-effect reasoning is still not entirely there, but it’s much better. He hasn’t seized since we came home in February (touch wood!). But I do notice a significant difference in him when he spends any time at all on the computer.

I can’t wait to talk to the doctor and UCSF and see if there might be some connection between computer work and seizure disorders. I’ve looked some on-line. Karen has too. So far, I haven’t found any credible information about a link. But I haven’t had a whole lot of time to spend searching. I’ll be able to do more now that the book is (mostly) done!

And now, with visions of geriatric commandos dancing in my head, it’s time for bed. 6:30 will come far too quickly!

The Happy Dance

2005-05-17T02:45:00.000-04:00

Geoff's book is written! Not yet edited, but written. I am so proud. (Not of the fact that I can eat an entire box of Hot Tamales. Which I did. By myself. Tonight. But I am THRILLED to have finished the initial writing phase of the project.)

Even better was the discovery that the manuscript, as it stands, in its rough-cut, rugged beauty, is not nearly as long as I was afraid it would be. In fact, provided that Geoff likes the way things look so far and gives his blessing, it is entirely possible that I can get the edit for word count finished before we go! I live in great hopes.

God is good. And now, the happy dance begins...

Flying Squirrels and Flying Leaps

2005-05-16T10:12:00.000-04:00

My parents left early (6:30) this morning. Last night they watched Cassandra while Robert and I went out on a date for the first time since March. We went and saw Jet Li in “Unleashed.” I liked it. I never listen to what the critics have to say… It was SO nice to take a break from the book and go out with my husband.

Barring unforeseen events, (yesterday's unforeseen event: flying squirrels raising a noisy family in our attic. Ineffective exterminator was called. More effective rat traps were set. Further bulletins as events warrant...) I will have the final chapter done by the time we leave. I've completed three major sections since Friday. Only four and a half more to go -- but the remaining ones are shorter and should go faster. Geoff won’t have time to look at any of the newly written stuff until late tomorrow, he says. I’m hoping to have the preliminary writing completed by then.

I would really like to do an edit of the manuscript and get it down to our allotted word count soon. My extremely ambitious plan was to have that done before we left. That's highly unlikely, but still not impossible. If, for example, time were to stand still for 48 hours, I could probably get it done.

And NO, we are not packed, planned, or otherwise ready to go in any way. Do people honestly think we are? Why on earth do they keep calling and asking such things? Makes me want to take a flying leap off the nearest rooftop...

I heard from Paula this morning, making sure our plans haven’t changed. I assured her that they haven’t. We still leave early on Thursday morning for San Francisco. Brain surgery awaits! Fun, excitement and adventure for kids of all ages! Bring the family! Who could ask for anything more?

Excess Baggage

2005-05-14T02:00:00.000-04:00

We got a luggage carrier for the Santa Fe today. Now we can stow our luggage on the trip without balancing it on our knees for 2500 miles. It cost less than a single one-way plane ticket, and it looks great on the truck. Some of those things look like weird hat-like growths, or zits that need splurting. But this one is rather unobtrusive and looks like it belongs there…

Mom, dad and Robert took Cassandra, went garage sale-ing and left me at home to work today. I got most of a section of the final chapter finished. The Grand Master Plan is to have that final chapter finished by Sunday, so I can spend the first few days of next week doing a complete edit.

Haven’t heard from Geoff re: what I sent him for review yesterday. Don’t know if no news is good or not.

I would love to have everything done on the book before we head west. That’s looking wildly ambitious right now – but I’m not ready to give up on the G.M.P. We’ll see…

We sent off the requested MRI files to USCF today. Sent them next-day FedEx. We don’t want to take any chances that they get there too late for the week’s film reviews. We’ve already seen that movie. God forbid.

Several short, violent storms hit here today. One early this morning took down a huge tree limb right ::splat:: into my garden, bringing down a part of the garden fence. Whee! That took some time to remove. But the new luggage carrier stayed dry inside! Hopefully, our clothes will too when we’re on our way.