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.

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!

Ahem.

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.
Tom

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