Oregon Trail

Location: Oregon, United States

Monday, November 27, 2006

29 shopping days...

Thanksgiving. We have much to be thankful for. A home that doesn't leak. A strong family. Beautiful surroundings. Friends with whom we shared the holiday. Days of sunshine. Raindrops that hang on the trees like crystals. And today, Snow! Here is the view of our back yard. Of course, as we are originally from Minnesota, this looks like next to nothing, but it is a big deal here. However, contrary to rumor, school is in session, much to the kid's chagrin.

William. No cramping and an increased appetite just in time for Thanksgiving dinner! His next treatment is this Friday. At that time I hope to get the go-ahead to begin reducing his steroid doses again. This is the first time he's been cramp free in ages, and we are very thankful.

Thomas. Thomas has taken to drawing lately. He has all sorts of Anime/Manga style characters that he has developed. Many of them have cyber technology built into their bodies or special suits that give them certain powers. As he talks about his characters, it is evident that they are really outgrowths of himself. Many have experienced loss of family and loved ones and are struggling to piece their lives together as a result. Many of the powers they have parallel gifts that Thomas has (x-ray vision = insight, sixth sense = empathy) . Others are in the process of finding their niche in a new world. As we talk about his characters, we talk about him and how he wants his story to turn out. It has been a wonderful, non-threatening way to process the move with him. On the outside, he appears fine - laughing, enjoying friends and family. But in the quiet moments, he is still deeply sad and experiencing the loss of all that was. We are glad he is able to use his drawing to communicate with us on this level.

Stephen. Nothing to report, I just didn't want you to think I'd forgotten about him.

Sasha. Sasha has found her true identity! Several times when I've taken her for a walk, people have stopped and asked, "Is she a flat-coated retriever?" And I would have to say, "I have no idea" because I've never heard of that breed before. Finally, this weekend I looked it up under Google images. Nearly every dog looks like it could be her! Whether or not she's a purebred, she is a great family dog and we are really enjoying her.

Slipping and Sliding. Part of the by-product of the rain is that things get slick. Like the leaves on the front lawn. And the deck. I have wiped out twice already in the last month and have the bruises to prove it (no pictures, ahem). Fortunately, the osteoporosis hasn't set in yet and I haven't broken anything. Part of the problem is that I need to re-train my brain to think wet = slippery like snow = slippery. Hopefully, I catch on before I do break something.

Saturday, November 18, 2006

William. Work. Paul's mom.

William had his first infusion yesterday and everything went fine. There was a chance that he would experience an allergic reaction, but he didn't. He was sleepy afterward and rested for the remainder of the afternoon. The doctor came in to touch base with us during the infusion - I thoroughly enjoy this physician, he has a great sense of humor and is compassionate as we struggle through our choices. He said that, because of the last bloodwork that came back, it looks like William is not doing well on the 3rd medication we had tried as his white blood cell count is down. So we are backing off of that medication, and being very thankful that we have the IV treatment to try next.

Work is pretty darn fun. I have met more permanently drunk people than I've known in my entire life. The other day, my co-worker and I were walking down the streets of Tigard with six homeless people, three of whom were literally staggering drunk, while the other three had just finished their morning beer. It was 9:30 a.m. As I get to know these people, I am struck with their humanity, their kindness, and their sense of humor. My job is to identify the people that are mentally ill, build trust and relationship, and plug them into services that will address their illness when they are ready. This can take anywhere from a few weeks to a year or more. In the meantime, I get to do what I call "therapeutic shooting the bull", which is the equivalent of "therapeutic hanging out" with youth, as I get to know their stories. And such stories...

I am also starting to do youth outreach for HomePlate. I've contacted the schools in the area and will be meeting with school counselors and speaking to health classes. This has been an interesting process, as people take a LONG time to return calls around here - about two weeks, in fact. In Minnesota, if it took that long, you knew they had lost your number or were blowing you off. But here, it is normal. So I get my shorts in a bundle and they call back like everything is fine and I have to re-group. Weird. And I get such mixed responses. Some people are all gung-ho about it and can hardly wait to set me up to come in, others are so rushed I feel guilty for even trying to talk to them, and still others are clueless. One counselor left me a voicemail that said, "Why don't you send us your brochure? That would probably be the best way to go about it. We don't have many homeless students in our school." But I have access to the number of identified homeless students are in that school. (Key word: identified. My numbers don't include the ones that haven't said anything yet. In fact, if this counselor is any indicator of how safe it is to self-disclose homelessness, I wouldn't be outing myself either.) I can't wait to call her back and gently, kindly, set her straight.

Paul's mom and got a good report after her MRI this Thursday. The tumor has shrunk slightly so she can take a break from radiation treatments and back off a couple of her other medications. She will continue to take seizure meds, a stronger dose of chemo pills, and get regular blood workMRIs done. Overall, this is good news, although she will most likely be nauseous and tired from the chemo. She is dealing with everything very well, the hardest thing being losing her independence - no small thing, as she is one competent lady. Go Anita!

Tuesday, November 14, 2006


Or: A Comedy of Errors

We had a long weekend because of Veteran's Day, so we arranged to meet the Marti's and "Do Seattle". Here is the original plan, and what we actually ended up doing:

Original Plan Actual Outcome

Leave approx. 10 a.m. Instead, took Wm. for blood draw, Paul worked from home on his computer, left at approx. 12:30.

Meet at Marti's for lunch. Starving. Stopped at McDonald's 1 mile from our house.

Meet Dan Skillings for dinner in Tacoma. A miracle! We met him and had a wonderful meal. (How weird is that to meet Dan in Tacoma? He lives in Bogota, Colombia. We used to see him in Minneapolis every year, but here we were with the Marti's and Dan, having dinner in Tacoma...)

Go to Seattle Saturday a.m. Another miracle! In fact, two miracles, since I pulled out in front of a light rail train, scaring the crap out of all of us, as we left the hotel. (I thought it was sitting still - there were no bells or arms down...plus, I had plenty of room, really!)

Go to see the Dead Sea Scrolls at the Pacific Science Center. After trying since Wednesday to reach the Science Center, found out Friday a.m. that the Dead Sea Scroll event was sold out for the entire weekend.

Park, and take the monorail to the Needle. Parked, waited about an hour for the monorail, and found out that they had cancelled service because of a gas leak under the track. Walked to the Needle.

Enjoy the Needle. Enjoyed the Needle, except Thomas was bored and made it his job to pester me incessantly about how long we had to stay. Stephen looked out every set of binoculars and loved it.

Eat Lunch. Found a Food Court, so everyone got what they wanted - another miracle!

Go to the Waterfront Market. I think we had planned to take the monorail here as well. Instead, we walked part of the way and caught a bus for another portion, then walked again. The market was crowded but fun. It reminded me of China, minus the smell of diesel fuel and sewage.

See the famous fish market. Did it! We watched them throw fish at the famous fish market, where they had a HUGE Monkfish hanging down as part of the display. As Stephen got closer to look in it's mouth, one of the guys behind the counter growled "AAAaaaaRRR!!" and pulled back on a rope attached to the fish's tail. Everyone jumped and we all got a good laugh. Then we waited for someone else to get punked, which they did - even better when you know it's coming.

See the first-ever Starbuck's. Did it! Not sure why this was important, but we were right there anyway...

Take the boat tour of the area. Ha! That is funny! Maybe next time - all that walking had us worn out and there would have been a mutiny if we'd made anyone do one more thing. We wisely chose against this.

Swim at the hotel. Psych! This also worked.

Eat at a restaurant two blocks from hotel. This was ridiculous. We left the hotel, but the road splits into a "Y" and we chose the wrong arm. We walked in the rain for too long, finally found the restaurant, and learned that there would be a two hour wait to be seated and a one hour wait to get food to go. We decided to go get the cars and head for the Interstate, hoping for a halfway decent chain restaurant. So we made a dash for it, got in the cars, and sat in traffic for the LONGEST TIME. As we sat there, we noticed that there was a restaurant serving pizza and pasta with seats available. Since we weren't going anywhere, I jumped out of the car and ran ahead to the Marti's car to see what they thought. They opted out and decided to go home (which ended up being a smart move) and I rushed the kids out of the car and escorted them to the restaurant while Paul found a place to park again. When we got in the place, they said they were closing in 20 minutes (at which point Stephen nearly had heart failure) but they could make our order to go. WHEW!!! Evening saved!

Go to a museum in Tacoma Sunday a.m. We went to the Art of Glass museum and loved it. Downside: they didn't open until 12 noon. However, we were able to watch a visiting artist making pieces in the "Hot House". They had a small gallery (would have liked more of this) and a place to create our own art, where we also spent a lot of time. There was also a bridge outside that has a large collection of Chihuly's work and that was a highlight.

Eat lunch at Marti's on the way home. Well, we didn't leave the museum until 2:00, so that put us back significantly. But the Marti's graciously hung around all day waiting for us and we stopped in and ate cheese and crackers, then left around 4:30.

Drive home while still light. Oh, well. It was dark, and raining, and there were gale-force winds. But we made it back in good time and in one piece. Besides, after our near-death experience with the light rail, a little rain was no big deal.

Enjoy our time with our friends. Definately! Despite all the waiting, foiled plans, and walking, walking, walking, we would do it again any day.

Monday, November 06, 2006


William. Here's the latest deal on William: we went to the doctor last week and determined that a.) the inflammation is so bad in some place(s) that all the medicine we have him on thus far cannot fix it and/or b.) the ulceration in his intestines has caused a hole or a fistula (like a mini appendix) to grow and become infected. Neato. So we scheduled a CT scan for Friday, which will determine more specifically what is going on, and then we can plan our attack. If it is inflammation, he will begin IV treatments with a strong anti-inflammatory. If it is infection, he will get antibiotics. If neither of those work after a time (I don't know how long), then we are talking surgery. William was pretending to read during my discussion with the doctor, but he heard that part and was unnerved at best. The doctor was very cool about it and allayed his fears saying that surgery was a long way off, there were so many things we could try before that. Funny, that's not what I heard, but for the time being I'll go along with it.

William has been like a little lamb as he experiences his cramps and gets poked, prodded and tested. Sometimes I wish he would scream and raise Cain. In a way, that would be he was back to his old self. Now, he's just so mature. We talked about it the other day. I said, "William, I'm so proud of you with the way you've been handling this whole thing." He said, "Yes, I think I'm a better person since I've had to go through this. I've had to learn how to live with pain." So, if he hadn't had to live through the pain would he be harder to live with? I think it would be the opposite for me. More pain = more ornery.

Update within the update: We got the results back from his CT scan and they show that everything is normal. That translates to: he is experiencing a very stubborn case of uncomplicated Crohn's. Our best option is to go with the IV medication at this point. Upside: getting off of prednisone, which over the long haul WILL CAUSE bone density loss, slowed growth rate and a host of other complications. Downside: this medication CAN CAUSE cancer in some people. So we are weighing a will cause vs. a can cause. Frankly, a sickening choice.

Paul. Paul is a much better person these last two weeks. I attribute it to three things: 1.) He finally got his Oregon license 2.) He finally got the title registered for car we bought this summer and 3.) He got another round of antibiotics for his chest cold/bronchitis. As I've mentioned in previous blogs, his long term stress level is three times over the danger zone. So, my theory is that he took real steps toward reducing some of his stress by getting these things out of the way.

However, I would like to take a moment to register the fact that life is not fair. That booger waited FOREVER to get his license and title squared away. I half expected them to fine him or call the Sheriff and have him spend the weekend in a cell. But what does he do? He takes a half day off, goes to the DEQ to have the car exhaust tested and is turned away - not because his car failed the test (see previous blogs for my experience), but because it doesn't have to be done until his plates expire. So he goes to the DMV, waltzes into the place, studies the stinking drivers manual during the waiting period, passes the test, and comes away with his driver's license like it was a piece of cake. Ugh! I swear if it had been me, I would still be locked up in a cell and the car would be impounded. (I refused to drive the car until he got it squared away. Twice in Minnesota, I used his car to run a brief errand and was pulled over for expired tabs or headlights being burned out. He drove that car every day and never got stopped - what is up with that?!)

The weather. It is positively balmy here. Like, tropically balmy. It started to rain last week and then a warm front came through. Last night it poured. Today in the paper they called it a "typhoon" and warned that rivers could be flooding. Really? I expected flooding in February, but now? And now I know people who live under bridges. How do they get the flash flood warnings?

I have been curious to see how the house reacts to all the rain. So far, besides feeling like the heat is turning on every five seconds in the morning and the gutters being clogged with leaves, it is holding up just fine. The gutters are an obvious easy fix. The heat, on the other hand... I've been reading up on energy saving steps, and our house is probably in need of most of them. BUT, the good news is: the other day I thought it would be a good idea to see how the chimneys looked so we can have a fire in the fireplace when we are ready. Lo and behold, there was daylight streaming down upon my face as I gazed up at the flue. Duh, duh, DUH!!! I never thought to check the flue until now, so the heat has been going straight up the chimney(s). Check that one off the list...