Update 2013

It has been a while.  My level of leukemia has stayed relatively low, but my side effects have gotten out of hand, so I am on a drug holiday.  No Sprycel for about 3 weeks now.  It has been absolutely lovely!

But lurking in the immediate future is a change.

I will be starting Ponatinib.  A brand new drug, just approved last month.

I hope the side effects are not as bad.

Happy thoughts right?

Here is a tiny movie of my fixed up trailer!!  I purchased this one without it having anything but the aluminum skin and the framing.  I hired Rose’s son, Jerry, a carpenter, to finish out the walls.  He also as a surprise installed a hardwood entry way and carpeting!  Very nice on the toes.

Just one Thursday

There are some out there on these drugs that have no side effects, or the side effects are minimal.

I totally envy those that can just toddle along and go to work and stuff. I don't begrudge them one tiny second, I am just jealous. I had a blood draw yesterday that was supposed to be for 11 am, then a meeting with the nurse to discuss the results at noon. Simple right?

Nope.

Husband tells me the contractor is coming between 8 and 9 am to pick up his money. Ok. I wake up at 8:30 and hope I haven't missed him, but the dog hasn't moved off my legs, so he hasn't shown up yet. Get dressed, make coffee. Forget coffee in machine, go to list of things to do, go back for coffee, notice morning meds haven't been taken. Take them. Look at the dog. Tell him he has to wait for his walk until after the contractor comes. We will go at 9:01! I promise. Take coffee to home office, do stuff. See list of what I need to do today.

I have to drop off the taxes at the accountants, get blood draw and then bring all the food I have been cooking for the past two weeks to my friends house (she is having surgery and I am leaving for California for 10 days so can't help out right away).

Contractor arrives at 9:30. Sigh. Look at the clock. Just enough time for a dog walk, I need to leave at 10 to make it to Seattle by 11. Wait! I forgot to check the cooler to see if it needs to be cleaned. Yuck. Needs to be cleaned. Drag its huge self to the kitchen, knocking over the dog water. Realize it won't fit in the sink. But the bathtub will be perfect. Of course I just cleaned the tub in anticipation of Next Door Neighbor's wonderful son coming to house sit for 10 days. Sigh. Clean the cooler. Wipe the cooler. Wipe the tub. Wipe the dog water off the floor.

Pack the cooler.

Look at the dog, it is 9:50.

Ok, once around the block buddy. And so we go. Wait, don't wanna be done with the walkie mama, dog stops at Next Door Neighbor's house, where his best friend Gunner lives. When the 97 pound dog stops, I stop. Gunner is a chihuahua/doxie mix, maybe 5 pounds. They MUST have their morning confab. So I go in her gate, she comes out and we chat for a few minutes.

At 10:10 I start to load the car. Finally, I am off. Wait, the garage door won't close. Sigh. Get out of car, stiffen, do I have the taxes???? Check. Yes I do. Press the button and run out the garage as the door tries to murder me.

Get on the highway.

Large sign flashes. Big accident ahead.

Sigh.

From the left lane, I get over 4 lanes and exit to a "long" cut but a non-blocked one. All of I-5 North is closed.

Realize that the new route is going to take me past the accountants first, and I should take advantage of that and stop there. I was originally going to have the blood draw then go the accountant's, then back to the center for my nurse consult. This new route will make me late for my blood draw. I assure myself this will be ok. I don't have a dr. visit, just a blood draw.

Drive through Downtown Seattle, park in the building, run up to the 38th floor, drop off taxes, forget to tell her 6 things. Run to Cancer center. Get behind ninety year old couple trying to find a parking spot for their tiny toyota at -5 mph. I feel badly for them, they are so old and clearly scared about coming to the cancer center. BUT they are not even crawling. They inch past an open space. I wedge my husband's enormous car into the spot. And run upstairs. I have to pee, but have no time. I register and sit down to wait. They call my name and the nice man starts to talk to me. I begin to tell him all about my veins. He gives me a funny look and says he knows all about them.

He does?? How is this possible. Turns out he is the same guy as last time, two weeks ago. I don't remember any new faces since starting this silly drug. I am astonished. I don't remember him at all. This freaks me out just as it has been doing for a year and a half.

I can barely keep my eyes open at this point. Soooooo tired.

Get lunch in the cafe at the center. Tip of the day: don't get the stuffed cabbage rolls in a hospital. They went down ok, but let me know about it later.........again and again.

Go upstairs and wait for the results. In a couple of minutes a nurse starts walking towards me smiling and saying my name. Mind you I am on the hemotology floor of the center and there are about 40 other people waiting and 15 staff all around. Usually someone just stands at the door and calls out a name and waits for the person to stand up and walk over. I don't recognize this nice young woman who is smiling at me.

She recognizes me! Apparently this is the same nurse I have been seeing for the last three blood draws. Sigh.

My numbers are almost fine, but the Creatinine is off. (I am also having kidney issues). Not by much, just a little high. Have I had enough to drink? I say yes (later that night I will remember that I have been wicked thirsty for days and have been chugging water like crazy). Oh well.

I leave the center and head for friends house. I haven't gone there from here. I get on a road I think will work (I went to school here, and should know all the roads by heart), but can't work out in my head where it will end and where I will need to get over but hope that I will recognize it when I see it. Friend calls at the exact same time and says, just stay on that road and it actually goes almost all the way to her house. As I drive I remember. Sigh.

Get to friend's house. Cannot believe I haven't fallen over yet. So tired.

Visit with friend.

Realize I have to go. One more stop before home. On craigslist the day before I had seen an ad for free foam scraps at a foam store right by her house. Get my piece of paper with the ad, look at address. Off I go.

Take all the foam. Fills the entire back seat of the car, a double body bag sized bag stuffed with foam pieces. I am going to cut them into tiny bits and make a mattress for my vintage trailer for camping. I feel a little bad about taking ALL the foam, as I was leaving the owner smiles at me and asks if I am the puppet maker...........Yikes, someone else might be looking for free foam. I hesitate. Nope, all mine. I got here first, and I have already wrestled it into a bag they gave me. It is mine.

Get on the overpass to the highway home. Strangely there are no cars on the highway. A closer look reveals that there are flashing lights at the base of the on ramp and that they are moving a 4 car accident from the left side of the highway to the right side. The back up, the radio says, is 10 miles long. OMG. A second closure of I-5??? in one day??? Luckily I am right at the beginning as the cars start to move, and I am on in about 15 minutes. Cruise control on.

Home. Home Home. Must collapse...........Walk in with foam and Husband goes bananas. What do I need with all that foam. Small meltdown ensued. He runs over and hugs me, tells me he was only kidding, he was just shocked at the amount.

I sniffle, "But it was FREE!" sniff sniff.

OK, pull self together. NOW I can collapse.

Wait, I haven't done any work today (I am a virtual assistant for a retired judge who now runs mediations) and there are voicemails to return and emails to do .....................an hour later...................

collapse.

Now formerly all of that would have taken only a couple of hours, and I would have been fine to continue and also do all the work on my own clients that have been sitting for 3 weeks now.

Sadly they will have to come with me on the vacation so I can work a bit as we toodle around the bay area.

And THAT was my Thursday.

I am exhausted just retelling it.

Caroline

3-14-12 Off to the Carpenter

First carpenter guy flaked out on me. Never showed up, never called, never answered his phone. So......

Aljo went on his first journey today. 10 blocks to the guy who will finish the interior walls! Yay. Although backing up was horrific. Got to the guys house, his wife comes out and moves the minivan, but then parks it back in the driveway, so I have to back up and NOT hit her car.

OMG.

Then I had two people trying to tell me how to back it up, but not in a good or helpful way.

Finally had to stop listening and just figure it out on my own.

Carpenter guy was sick so he didn't come out and let me tell him any of the little things I wanted, or to watch out for.

I am a little worried. But will try and keep the faith that this will all turn out ok.

Having rather a bad week with pain and fatigue and that is really not helping my attitude towards the world. I am a little on edge. And I am tired of being so sick and tired all the time.

Blah.

3-6-12

Today’s adventure was trying to use expandable foam instead of putting up walls. Didn’t work. Had to get the goop out before it hardened and became a bigger mess. But I did manage to clean out the trailer better. I purchased the correct leveling jacks at Camping World and then spent a few minutes getting my knees all wet leveling out the trailer. But now it is nice and solid!

Am now going to look on line for a handy person to finish the walls. I just don’t want to.

Just called someone, they are coming on Monday to do the walls. Yay! Hope it goes well.

03-05-12 Finished Insulation!

There will be a slight pause in our story to tell you about today's adventure.  Suffice it to say, I have a new trailer, and this one was gutted to the studs.  I have been sitting in it for a week now, terrified to start, because I had no idea where to start.

I had a friend, Ron, come over.  He used to own a lumber yard and is a wood worker guy.  He and his wife stopped by yesterday.  He had a lot of good ideas.  Mostly on how to restore the trailer.  As he was speaking about stuff I know nothing about, I realized that I don't want to "restore" this old thing.  I don't need it to have its former glory.  I don't think I will keep it for more than 5 years.  I just want something functional and cute.

So I realized that I just have to be brave.  And start.

So I did.

And in one day, finished all the insulating.

The guy I bought this from had packed the trailer with all the materials I would need (almost) to finish the thing.  So I just used up the insulation boards that he had.  Then went to the store for some more when I ran out.  His was about a little more than a quarter inch thick, and I bought more that was 3/4 inch thick.  Worked even better!  The hard part is the curves.  The ceiling is already done.  I am left with fixing the side walls.  Which are straight, but the edge that touches the ceiling is curved.  See the pictures for what I mean.

So I had to figure out how to cut the curves.  I ended up just going outside the trailer and holding the board up, then eyeballing the curve with a sharpy.  Then cut it out.  Turns out I am REALLY good at that.  Yipee!

Next is going to be using duct tape to hold all the insulation boards between the studs.

And then the really hard part.  Insulation is easy, it is foam, so you can bend it.  The wall material is not going to bend that way.  I have tons of fiberboard called Masonite.  I will HAVE to make a template out of paper and then put that against the board and use a jig saw.

No way around that.  And I am scared.  I am not sure what of, maybe expending energy that doesn't accomplish what I want.  Energy is a precious commodity these days.....

Here are some pics:

This is the little 1957 Aljo.

Today's projects included:

1. Removing the stripped screw that I mangled putting in an L bracket to hold the wall to the bench seat as someone had removed all the hardware holding the wall to, well, anything.  And when you opened the door, the whole wall moved.

2.  Removing and replacing the screws that hold on the outside latch assembly.  Someone had put in screws that were too long, and would poke out of the wall once the wall was finished.  Stupid.  Luckily found some in my collection of odd screws and nails that I save from EVERYTHING.

3.  Here is what the walls originally looked like:

That is bare aluminum skin under the brown paper.  The paper is from 1957 and crumbly.

Here are the walls insulated!  I am not sure whether the silver side is supposed to out or in, and I wasn't consistent.  Don't care.  Will be covered up with walls soon, no one will know.  See the horrid curves?

4. Put in all the insulation.

5.  Bought a new toolbox and new hammer.  Cannot find old hammer.

6. Pulled out old rusty nails from studs that were no longer holding anything up.

7.  Attached the handle to the vent on roof with new screw.  Don't know why that wasn't done.

8.  Added strips of flexible wood to the corner to replace some rotted wood.  But again, only need it to last 5 years, it will be under a tarp for the rainy season, and only camped in for good weather.....

9.  Sat in it and dreamed of exciting camping trips.

10.  Bought a new camping chair.  A director's chair that folds.  The other folding chairs I have give you black and blue marks on your thighs after a weekend of sitting in them shivering in front of the fire.  Yay!  New chair!

Here are some more pics:

It's gonna be GREAT!!!!!!!!!!!!!!!

03-02-12 Hunting for new trailer

So I have been bad about keeping up this blog.  I will attribute that to new drug mix and the fact that I have been working to tie up some loose law office ends.  Those are now tied down, and I should take the time to update here and attempt to write everyday. 

I shall attempt to catch you up!

So, we know that I sold my last trailer.  I then spiraled down quickly into a puddle of obsession to replace it.  I spent untold hours lurking on Craigslist trying to find the new one.  I even drove out to Longview to look at what I truly thought would be the next iteration, a tent trailer.  On the web it looked in perfect condition.  And it seemed to have a side that was larger and small, maybe twin sized, opposing bed.  It was at a dealership.

I called the number and found that the guy had just come back from Seattle and really wanted to go home.  But I asked a few questions, which he was happy to answer.  He did not know if the trailer lights worked.  But he would check.  He called me back in about 30 minutes.  Yes they worked!  He mentioned that he was surprised with the amount of phone calls he had, so he guessed he had put the wrong price on this unit.  This got me very excited.  He agreed that since I was the first to call, I would be first in line the next day to see it.  He called back another 30 minutes later, and I was unable to catch the phone fast enough, so it went to voicemail.  I had given him my cell phone. 

So now he knew I was a lawyer.  Not good.  This kind of ruins my ability to negotiate well.  People have preconceived ideas about us……but I joked with him when I called him right back, since he was a used car salesman, he really didn’t have much of a leg to stand on!  He laughed and we had a chat about life philosophies.  We seemed to have similar views about how happiness is up to each individual.  That it is a choice. 

I have a quote on my office wall by Abraham Lincoln: “Most people are about as happy as they make up their minds to be.”

I truly believe this.  That you can choose to see the big picture or focus on the minutia.  The big picture is usually much sunnier than that tiny patch of ground over there under the dead tree……

He was calling to let me know that since he was a dealership the final out the door price was going to be $1650.  This is much more than the $1200 he had it listed for.  He tries to tell me that these are the licensing fees.  In my mind I am wondering.  When I licensed the Fleetcraft it was about $50.  Hmmm.  But I really thought that that was still a decent price for a small tent trailer.

I don’t like to go to places I have found on Craigslist without backup, so I called up AnnaLisa and lo and behold she would go down there with me the next day!  So we arranged to meet and began our adventure.  I was so excited that I went on the internet that night and managed to find the original owners manual and download it, print it and bind it with tabs.  Woo Hoo!

Longview is 100 miles south of my house.  It was a fun trip down with my friend.  But as we pulled up to the dealership.  Yes, a used car dealership.  There was the trailer.  Kind of tilted in a bad way.  Looked like one of the beds had come off its rails.  And it was HUGE.  As we walked across a greasy, litter strewn parking lot surrounded by crap, towards the trailer it began to look worse and worse.  The canvas was torn in a number of places.  While it was clean inside, the outside was terrible, tape holding things together everywhere.  And it turned out the bed that looked like it might be off its rails was really only pushed in half way with the canvas draped funny. 

As I wander around this thing AnnaLisa steps to the back of the trailer and the whole thing tips.  He hadn’t put any levelers on the trailer.  Sigh.  This freaked her out and she went to sit in the grimy office.  At this point the guy comes out.  We shake hands and start to take a look in detail.  I am hugely disappointed, and completely intimidated by the thought of having to pack this thing up together and open it up all by myself.  I think it is more than I can handle.  Also the canvas is in such crappy shape.  Dealer guy tells me it is just fine and if I truly want to change it up, I can find a hungry seamstress who can fix it for a small price.  I happen to know that new canvas is $600 at the very least.  Which I tell him.  I am feeling worse and worse about this deal.

I give him the manual and tell him that I have to think about it, that I am going to take my friend to breakfast (did I tell you in order to be first in line to see it we had to be in Longview at 8 am?  This means I got up at 6 am, and picked up AnnaLisa around 7 am—crazy!). 

We got back in the truck and headed out for breakfast.   

We did not go back.