Karen's Page

Welcome to Karen's Page, a web page intended to keep Karen's family and friends informed about her cancer. Karen, age 40, has a rare form of cancer called Pseudomyxoma Peritonei. She and her husband Tom have 2 children ages 4 and 7.

Thursday, April 27, 2006

Travel talk, part Un.

Chemo 7 is behind us and oh my, we are in the home stretch.

Hey everybody! I am still alive and kicking and just glad to be here. We have been a busy crowd over the last few weeks, and I am glad of it. Life is back into full swing with baseball, traveling, chemo, cracked heads, broken wrists, giant allergic reactions, running away dogs, and other such fun.

Let’s talk about the travel first, shall we? As you know, we launched the SANT (See America NOW Tour) a couple weeks back with the trip to the Grand Canyon. I am glad to report that no matter what I write here tonight, it won’t be enough. So whatever you get out of my ramblings, multiply it by two and that might be about right.

First of, and miracle occurred on Tuesday the 11th. We had planned to leave early on the 12th to arrive in Williams that evening, but as things came together we were packed, fueled, and ready to go by mid afternoon on the 11th. I mean we were READY TO ROLL. This is unheard of.

Karen was feeling well and had done a great job doing the grocery shopping so all that left me to do was pack the trailer, hook it up, get the truck ready, do the bikes, get the cameras . . . well it was a few things. Anyway, we decided to hitch up Barnaby and head for lovely Needles, California that afternoon and break up the trip. So we did. We drove out across the high desert on a road that I have never driven, state route 177. This is a road frequented by river rats and having known a few of them, I understand it. They play in the heat all weekend and then drive back to the valley on this road but I tell you they could almost sleep on it. I have not, in all of my experience (even in Montana and Wyoming) been on such long stretches of truly straight road in my life. One stretch was over 50 (that’s 5 – 0) miles long!!!! You just point the truck and off it goes. I think I felt it try to wander around just out of sheer boredom. Look at your atlas!

Anyway, we stayed at a KOA in Needles that night and the next morning headed west on I-40 (that’s The 40 for you west coasters) and drove. I loved it! I had forgotten the beautiful mesas that are along that drive as you change altitude, and the winding roads that climb up and up until you are at 6100 feet at Williams. It was tremendous, and I was really pleased with the whole thing. What more could I want? Karen dozing next to me, in carp-sleep, the kids in the back not touching each other, the Airstream gliding along behind me while I burned massive amounts of fossil fuels! What a country!!!!

We a thing by the side of the road that someone built in a giant ball sitting up on a pillar. This thing was a good 6 stories high, and open in places to allow a view of the . . . nothingness . . . around it. And then – I love this part – they have built little UFOs and scattered them around the property. They put windows in them, and seats, and even marked them ‘UFOs”. It is wonderful, and a true roadside attraction. As we came upon them, I quickly took the next exit to double back and visit, my mind a raging torrent of ideas about some goofball that built himself a roadside oddity and a souveneir shop that sold two headed alien dolls or goats with no heads from a close encounter. Shoot, as I wheel down the frontage road towards those glistening pieces of Americana I practically had my money out to pay the admission fee, whatever it was. This was a piece of craftsmanship that I could appreciate. I was really pumped up, and I was not the only one; there were some other RVs and a car or two who had felt the same pull and heard the five-note tone on the radio that drew them in.

I think Tucker and Hudson were a little concerned about old dad at that moment.

Then, as I backed the trailer off of the road up onto a dirt path, I saw the dreaded: NO TRESPASSING. It’s someone’s home, and I ain’t on the guest list.

And I tell you, it’s not some low rent junk collector either. There was a Jaguar and a nice pickup truck in the carport, so the owners were in there, they just weren’t talking.

We settled for some pictures and went on our way, but I was pretty pumped. I love that stuff.

We made it to Williams late afternoon and checked in the all-new Grand Canyon Railway RV park. And when they say new, they mean that it is barely finished. Now, it’s a nice place and paved everywhere with new buildings, shade structures and the like, but it is about as warm a place as a parking lot. Each site is anchored by a mighty tree that stands about four feet tall and has a trunk the thickness of a #2 pencil. That’s your shade right there.

But we had full use of the hotel, and were within throwing distance of the tracks and the train station. Williams is a cute town, built along old Route 66 and full of the classic American things that you expect to see: Safeway, Motel 6, toy stores, Indian art stores, etc along with lots of diners and ’66 themed eateries. It’s on the upswing, and most of it is due to the railway.

We had arrived. The boys took off on their bikes, and Karen and I settled in. Tomorrow was train day, and we were excited! We walked down to the station and got our tickets and passes for the train ride and bus tour, and visited the set of the cowboy shoot out, and checked out the hotel lobby and some neat memorabilia that they have on display. At 6:15 the first train of the day returned from the canyon rim so the boys and I walked over to see it. Hudson was beside himself, mainly because it was a classic 1950’s diesel engine restored to perfection and looked a lot like his favorite train at home. The noises left him a bit spooked but who could blame him? It’s a big hunk of machinery, and we were standing next to it and touching it. The low rumble of the engines at idle was very powerful and he was really excited.

Then it was back to Barnaby, into the shower and off to bed for the big day to follow.

And that’s it for tonight. This weekend, we will visit the canyon and all of its bugs, and talk about falling off the edge.

It could happen . . . . . .

Thursday, April 20, 2006

Chemo #7

Hello Friends,
Well, I received chemo #7 on Monday. It went pretty well, though, I'm experiencing the side effects even today (nauseous - yuck). I see a teeny tiny light at the end of the tunnel! If everything works out, I'll be done with chemo July 1st!

One of the frustrating things now, is that I feel I am getting increasingly more out of shape. I can't seem to work out enough to get back in to shape. I go to Jazzercise whenever I feel that I can. I guess it 's better than not going at all! So, I think July will be spent on getting back in shape. I still feel the frustration of it all. You all know that I like to be in shape!

Our trip to the Grand Canyon was more than wonderful!! The train ride was so fun - the boys loved it. It was a 2 hr. ride, and they tired of that after a while. It helped that we took a first class train that had snacks and singing cowboys and indians to entertain us. The Grand Canyon was so incredibly beautiful. I told Tom that I want to start saving up for our next trip, which will involve hiking, a river raft trip and staying over night. Of course, the boys have to be older, so there will be plenty of time. Tucker really liked the Grand Canyon. He said, " Mom, it's so deep, I love the Grand Canyon!". It's nice that he appreciated it. Hudson didn't quite get it, though was appreciative of the fact that if he didn't stay away from the edge, his parents would have a heart attack! We took a bus ride around the South rim and had a very informative bus driver, who really liked his job. He had lots to tell us. The only drawback was that there were a ton of little bugs flying around everywhere. They didn't bite, but were annoying. I was amazed at how people could stand by the awesomeness of the grand canyon and could only focus on the bugs. One lady didn't even get out of the bus because of the bugs. Oh well. We also had the opportunity to explore an old soldier/indian fort, explored the cliff dwellings and toured some caves. All of this stuff is what I love to do!!

That's pretty much it for now. Thanks again for all of your support. YOur prayers mean so much to me.


Monday, April 03, 2006

Chemo 6: Half Way Home

Hey everybloggy,

It has been a time since I rapped at you, so I hardly know where to start. Karen has been doing a much better job of writing down what is going on than I have, and for that I thank her. Days do seem to get away from me right now, as with Karen up and down as she is, my days are so full that they whiz by at light speed. At this point, I think that I have earnestly lost the ability to truly relax. Oh, don’t get me wrong – I have a reasonable facsimile but the times when I am not working or at a meeting and am without the guys, Karen or the dog requiring my attention for something or other. Evenings are always there but I don’t really have the energy then to relax, if that makes any sense. However, July is coming and with that the end of the chemo and then the next phase.

We have been doing a lot of camping with the boys lately, and I am getting it down to a pretty good science. A couple of weekends ago we traveled down near San Diego for an Airstream rally. It rained and rained, and was cold. The folks in the club did not know quite what to do with the boys, however, so we spent the weekend fishing in a pond that purportedly holds massive catfish (never had a nibble), visiting a game room where the games did not work and we had to dust of the well worn air hockey game before the pucks would even slide, and hanging out with Big Al the duck, who was an interesting bird that thinks he is a dog. He wags his tail and lets you pet him, and follows you all around until the next, more interesting human comes along. At the last second I had loaded up a little TV and Tucker’s game cube (which violates all of our camping rules) against the possibility that it would rain on us. And rain it did, so we left Barnaby’s living room in the ‘giant bed’ configuration and turned up the heat. We ate popcorn and raced Mario cart a lot, read books, and watched a couple of movies together. It was really quite cozy and for sleep, only a tent surpasses the gentle pitter patter of rain on top of an aluminum trailer for soothing sleep noise. It was heavenly.

This last weekend we loaded up and went to Cottonwood Springs, which is at the far end of Joshua Tree National park, and although only a 45 minute drive away, it is a world apart. This was a new moon, so the sky was so black that stars were a blanket of sparkles in the sky, and the campground was quite full of stargazers and their telescopes, wandering around in the dark with their little red-lighted flashlights. It was nice. Sean (LB) Roberts got a free pass from his family and joined us solo. We hiked to the top of Mastodon peak, which is a nice hike up from the campground and up on to a rocky little lookout. The boys had a great time, but for the first time in his life, I would not carry Hudson on the hike. He is just too big and I have me to carry! Anyway, he hung in there and but for the last mile when we heard a constant litany of “ I can’t walk any more!” He got back just fine. They went to bed early at their own request without a peep and slept the Blessed Sleep of Children. Especially when they are bedded down in the camper, in their little sleeping bags, surrounded by their own menagerie of carefully chosen traveling companions, their happy and satisfied sleep is the best to watch and I do enjoy it. I can envision the happy memories of the day replaying in their minds as they smile and snooze.

And breakthrough! This is first trip that Hudson has not rolled out of bed and come to wake me up as soon as the sun meets the horizon in the morning. He played on his bed, read his books, and chattered to himself and then to Tucker when he awoke, and finally came out to see me a little later on. It was so luxurious to stay in my sleeping bag until 7:00AM.

Saturday was the second of Tucker’s baseball games this season, and we drove down the mountain to play. We dressed Hudson in his last-year’s Dodgers uniform and he helped me in the dugout with arranging helmets when our team was in the field. He was a cute little mascot but the other coaches wondered why we didn’t play him. “ Because he is four” was a good response and brought a lot of raised eyebrows. So Tucker’s uniform when he was 7 fits the Min at 4. No big deal.

Holy Cow.

True to his athletic career, Tucker has started off his season with taking some serious physical hits in the game. Soccer has brought him kicks to the face, ball hits from 5 feet away in the face, ball hits to various parts of his anatomy, and some spectacular body hits for a little guy. I am talking about the kind of things that make then entire viewing crowd gasp and mutter things like, “ oh boy. That’s not good.” And “wow, what a hit. I hope he can walk.” Or even “ Didn’t that break anything?” Well, in our division this year we have entered the world of kid-pitch baseball – with real hard balls. No more coach-pitch or t-ball. We have moved on. Hence, if you have a little guy on your team that is marginally accurate to the plate, he is designated as a “pitcher “and shown where he has to stand. Toss in a young season and you have the newest of the new little pitchers throwing for the first time at their terrified counterparts standing at the plate. It makes for some interesting moments.

Tucker’s came on Saturday in the 3rd inning. It was this pitcher’s second batter, and Tuck stepped to the plate. He took his stance, just like coach told him to, and waited for the pitch. He took a strike and two balls, and then the man on the mound shot a decent fastball to the plate – if the plate would have been two feet to the inside of where the batter stood. The pitch took Tuck right on the rib cage as he tried to flee the batter’s box and made a resounding, melon-like “THOOOONK!” that I heard very clearly from my station at first base. Tuck went down like a sack of bricks and the crowd all moaned and gasped. I hustled over to the Tuke and he was doing a stifled cry on home plate so I stretched him out by having him raise his arms and making sure that he could breath. He gathered himself quickly, and stood bent over for a bit. After I had ascertained that he was OK, I asked him if he knew what he got for that ball hitting him. He said he did not. I said, “ you get to go to first base automatically.”

His face broke into a pained grin and he hustled as best he could off to first. I was so very proud and the crowd cheered and hollered for him. One coach from the other team noted that he did not even rub his ribs, just got up and went while the other coach pulled me aside and said, “now that’s a tough kid. If my boy took a hit like that he would be out for the rest of the day.” His teammates were impressed too, and Tucker went on to score a run for his trouble. Later in the game he hit a nice line drive over second into right field and drove two runs in before he got stranded on second by the mercy rule of 5 runs in an inning. So Manly! So now, our dodgers are 2-0 for the season.

You will note I keep track of the record, and even of the fact that we won the first game 12-1 and the second 7-2. How? You may ask. Isn’t it all about having fun? The kids all get trophies, right? Wrong. I am so glad to be in a division now where the kids will earn a first, second, third, or . . . . nothing. The winners get the goods.

Anyone who has played in the little leagues where “you don’t keep score” knows that the only people who don’t keep score at your games are people at other fields not keeping score of their games. Every little guy from the 4 year olds in soccer to the 7 year olds in baseball keeps score. Only the painfully politically correct ‘don’t keep score’ in the real world, and I for one am glad to see hard work rewarded this way in team sports. Didn’t win a trophy this year? Hmmm. Work harder next year. Goof off all season and didn’t listen to your coach? That’s a bummer.

I bring that up because it got me thinking on the soapbox level. Now, speaking as a kid who in – I believe- three seasons of baseball did not win one game, you might think that I would be a fan of the ‘everybody wins’ concept. Au contraire. We stunk and I knew it. We never practiced, the coach did not really care, and our sponsor was a gas station that didn’t really mind. I was in it for the ice cream, myself, and that was that. At one of the first practices this year, a mom said to me (aghast) “ I hear that everyone doesn’t get trophies this year! Can you believe that??? Everyone should get one so no one feels bad.” Those of you who know me may note this little sentence as characteristic of words that make me go from easy-going middle aged dude to incredulous dude bordering on mean with a touch of biting sarcasm.

“Well,” said I, sarcasm no doubt dripping from every letter as I strove mightily to restrain the biting words just screaming to burst forth, “ in this league the first, second, and third place teams get trophies and everyone else gets to play next year. How do you FEEL about that?”

She was too self-absorbed to acknowledge my bite. “I just think that all the kids should feel special.”

I recused myself from the conversation on the grounds that I was going to say something and not be able to stop adding to it. When will this political correctness end? When can people again say what they mean and just put it out there without stopping to think how it may affect some snow –elk on the other side of the planet who may feel bad as a result???? Krikey!


Karen is tired of feeling like crap, and so are we. She has not much energy and really misses her former life. It’s a fact that this is her top priority now, to get better, and she is doing a great job. She has hit a rhythm where we know kind of how she feels during the phases of the chemo and we can then plan accordingly. For example, we are going on part one of the SANT next week to the Grand Canyon and she has planned her next chemo (VII) for the Monday after we return. This way she will be feeling her best while we are on the trip, and she can get the most from her time.

I must confess occasional frustration on my part in not being able to count on her for things that I am used to counting on her for. It’s usually the tiredness that gets her and often she will say she can do something for me and then I find later that she just pooped out and couldn’t finish it. I can accept that, though, and get it done anyway. I have to think forward to a time when she can do all of her things again without having her days dictated by how much energy she does or does not have.

She is doing well, though. She can take the guys to school and pick them up most days, and she still works tirelessly on the endless laundry that we produce and on her good days she can go places with us, go to Jazzercise, Tai chi, and her classes at Gildas club. Those are the times when it is nice to pretend that we have a normal life again if only for a few days.

As mentioned above, next week we are going on a trip as a complete family and are going to have a great time. We are packing up Barnaby and driving to Williams, Arizona where we are going to stay at the Grand Canyon Railway RV resort and take the train to the south rim. Along the way we get held up by bandits, and when we get to the rim we are going to take a tour up and down the canyon to see it well. We have not told Hudson about the train part, and in fact have been very vague about the whole trip because if he were to know that there was a major train ride involved, he would not sleep for the next week until we leave.

It’s going to be a nice little road trip, about 8 hours each way, and I can hardly wait .

We have begun in earnest to bring to life the foundation that was born of Karen’s Chef Auction last fall. We have booked the date for December 14 and already have over 20 chefs that want to be involved, including all of those from last year. It’s going to be a fantastic event, and we have incorporated the 501C3 corporation and formed committees to get it moving. We have doubled the number of guests we can have and improved the venue tremendously. I can’t wait.

Enough for now! Have a nice night.

#6's been a little rougher!

Hi Everyone,
Yep - I'm half way through the chemo - yeah! It was tougher than the last - something I intend to ask the good doc. about - why? Most likely, there isn't a reason. I suppose it's just a good lesson on taking each day one at a time. I learned that lesson long ago, but seem to have forgotten it! Oh well. I was so incredibly tired this past weekend. It really is amazing. Tom took the boys camping again, which was nice. They had another wonderful weekend with Dad. They hiked a lot, came back to the desert for Tucker's baseball game (Hudson helped out in the dugout) and star gazed. I slept. Thank you to my wonderful jazzercise friends for dinner and flowers! It's such a great pick me up. My family really is grateful. My neuropathy isn't as bad this time, but the nausea and fatigue was worse. I also experienced my lower back pain again - something I intend to talk to my doctor about. Advil takes care of it most of the time. Remember the back pain I had in the hospital? It's like that, but not as bad - fortunately!!

I can't wait for spring break to start. I can spend time with the boys, feeling rather good. I won't get chemo until it's over. I insisted on that. I need to have a life, for heaven's sake.

I'm still feeling a little tired and achey today, but better than before. Progress - yes.

That's it for now. Where' s my hubby, you ask? He's very very busy. He will most certainly blog soon, so stayed tuned.