Trial update (And wait. There's more.)

I met N at Sonora for my blood draw.  They didn't have our appointment in their records!  So we waited.  And waited.  And waited.  N called someone at Hope to bring what N needed for our appointment we were going to do at Hope but now she wanted to get done while we waited.  Of course, as the person arrived, we got in for the blood draw, which went fine.  I went to the bathroom and gave N my cup.  I signed the visit log and we called it a visit.

I almost forgot something!  (Shocking, I know....)  While we were waiting, N told me the latest about the extension trial and it's totally different from what I've heard so far.  It's a 3 year extension (instead of 2).  MRIs continue to be brain only; I mentioned how I thought that was wrong and she said she has heard that from other MS trial patients who, like me, have had lesions on the spine.

And the kicker: the trial drug is only administered after a relapse.  Yes, that is what she said--no drugs until/unless there is a relapse.  I indicated some concern about the criteria for a relapse and told her that I've already had one that Dr. G does NOT consider a relapse.  She thinks there is specific criteria, but I'm not sure how that works or if I believe it will make a difference.

I didn't tell her specifically about wanting to get evaluated for CCSVI, but she may have an idea of what is going on (from other MS patients), because when I told her I was concerned about continuing in the trial in case I wanted to explore other treatment options, she was quick to tell me that I can withdraw at any time.  She was emphatic that I needed to know that I can withdraw at any time.  (Hmm, what am I excited about?  I can withdraw at any time!)

BTW, when we were talking about MRIs, N mentioned that Symon (the place that does the MRIs) also does the mammograms for some of the other trials and Symon has a new procedure that seems a little questionable.  (But I am already skeptical of them since it took 8 months to get my MRI results after I waited almost 2 hours to have my last MRI....)  Apparently, they have started requiring a breast ultrasound with the mammogram.  While the ultrasounds are considered necessary for some women with "denser" breasts, this sounds like a money maker to me.  I think I'm coming up to the age for my next mammogram, so I found all of this interesting.  She mentioned that most insurance doesn't cover the ultrasound.  Surprise, surprise, surprise!

Agility class

Everyone keeps telling me that we are going to get rain on Saturday, when we are running at the agility trial.  Teka does not like the rain.  At all.  But we've been working on it when we can--obviously not too often, living in Phoenix.  So tonight, as I drove to class, and it rained, I thought I could work with Teka in the rain.  If they didn't cancel class.  I got to class, and it wasn't raining!

We ran a jumpers course--just jumps, with switches and crosses and distance.  We ran a couple times.  Cassi and Teka both had fun and did great, although we made some mistakes and worked them out.  There was a weird sequence that Teka did better than Cassi, but Cassi's stride is so long.  They come over a jump, and there is a jump to the right, a sharp right turn.  But they don't go over it; they have to go behind it and come over.  It's a really tight front cross, and bring around the jump.

As we finished the second round of everyone running, it started to sprinkle.  We were told we could run in the rain, and a few of us wanted to run.  It started to rain, and Teka was whining about getting wet.  I took her to the first jump, and she did it and then stood there with her tail tucked.  I acted excited and was able to coax her into running and jumping, one or two jumps at a time.  I didn't correct any mistakes, just got her running and jumping.  She did okay, but she wasn't happy about it.  And Cassi wasn't happy about NOT getting to run in the rain.  As soon as Teka was done, the class started putting the jumps away and getting their dogs to their vehicles.  I'm glad I got to run Teka in the rain.  If it rains on her this weekend, we'll just try to have some fun in the rain, but there is no way she will get Qs.

Weave 201C

Teka was super excited to play tonight, although she was a little nervous a few times about other dogs hanging out too close to her exercise.  Our first sequence was divided into two parts.  The first part was 3 jumps (the first one 90 degrees from the second, the rest straight on) on my left, into a U-shaped tunnel--on the right side, coming out on the left end, back over the jumps and U turning over the last jump into the weaves.

The second part started with the left side of the tunnel, into the weaves, over the 3 jumps, into the weaves again.

Our second sequence was an oval, and we could stay in the middle, pretty much turning in a circle a couple times and then going the other way.  We started into the left side of the tunnel, into the 6 weaves, out over a jump, into the other 6 weaves, back into the left end of the tunnel, through the 6 weaves, out over the jump, into the 6 weaves, back into the left side of the tunnel.  Then we front crossed and went back into the weaves we just came out of, over the jump, into the other weaves, and back to the left side (not the close side for the dog) of the tunnel.  That was what I had trouble with Teka doing, somewhat because of her but more because I kept getting my arms and legs mixed up.  I needed to have my right arm and leg pointing at the tunnel entry.  R demonstrated it like a ballerina move so if I end up doing it at a trial or something, I totally blame her.

Last, R stood by a set of 4 weave poles and moved them each time we went through the exercise.  We added a double jump at the beginning, wrapping into the straight exercise--tire jump, jump, into the weaves.  Teka's entries were awesome.

While we waiting our turn throughout the night, I worked with her on "crawl" since she kept laying down with her tail going a mile-a-minute.  It was so cute.

Contact 301

Cassi got to work on her own again.  D wanted to see if we could transition her from the Reebok step to the contact board, but she only did the contact board when it was ON the step!  We did lower the step and she was able to get that far.  D reminded me to treat from above and a little behind Cassi's head.

Cassi also did the clicker board  with a tunnel and the contact box with a jump.  I was able to run her through a super low tire jump too.

An extra serving, please

I got a call from N at Hope Research a couple weeks ago.  She was letting me know that Dr. G was concerned with my last blood test results and wanted me to see my endocrinologist again.  N forwarded the results to Dr. R's office and I got a call letting me know they would send me the lab request.  I got it, but kept forgetting to NOT take my Synthroid in the morning--it's almost a habit now.

Yesterday, I decided to schedule a time at the lab near my house, but not the one I went to last time.  I thought I would go to the one my husband goes to but there were two in the area and I wasn't sure which one.  So I made the appointment at the one with the earliest availability (because it's a fasting blood draw and I like to eat sometime in the morning.)  It wasn't his location.

My appointment was at 7:45 and I was on time.  Well, I signed in at 7:48, which is on time for me!  No one was at the desk.  So I waited.  Eventually, she came out of a room with a patient.  I'm pretty sure that there was only one person working in the whole office, doing the desk work and the blood draws.  When I finally got into the room, someone else came in the office, so she helped him before coming in to take my blood.

Once she came in, she took my blood, lickety-split.  (That means quick and simple, ya'll.)  She didn't think that it was difficult to find my veins at all.  Whew.  I deserve a reward!  Ground Control for a latte and oatmeal.  Scrumptiousness.  Yes, I made that word up, all on my own, but you can use it.  You're welcome.

Best of bowling

Chocolate Stout Whoopie Pies with Kahlua Buttercream Filling

I saw this recipe that was adapted for St. Patrick's Day.  Our friends invited us for dinner and asked us to bring dessert, and I thought I would take the opportunity to make something new.  I thought I would have most of the day to work on it but family intervened, giving me very little time in the morning before going to Rawhide most of the day.  Mine do not look like the photo in the link.

Chocolate Stout Whoopie Pies with Kahlua Buttercream Filling

Adapted from Bon Apetit January 2011 and Smitten Kitchen

Makes about 16 finished whoopie pies (If you can resist the cookies straight from the oven)

Cookies:

• 2 cups all purpose flour
• ¾ Cups unsweetened cocoa powder
• 1 1/8 teaspoons baking powder
• 1 teaspoon baking soda
• ½ teaspoon salt
• ½ cup unsalted butter (1 stick) at room temperature
• 1 cup sugar
• 2 large egg yolks
• 1 Tablespoon vanilla extract
• 1 Cup stout (I used Wolaver’s, Guiness works too)

Preheat oven to 375°F. Line 2 large rimmed baking sheets with parchment paper. Sift flour, cocoa powder, baking powder, baking soda and salt into a medium bowl. Using electric mixer, beat butter, sugar, egg yolks, and vanilla in large bowl until well blended, about 2 minutes. Add flour mixture in 3 additions alternately with stout in 2 additions, beating until blended after each addition.

Put cookie dough into the freezer for about 10 minutes, just to firm up a bit.  Drop dough by very rounded tablespoonfuls onto prepared baking sheets, spacing 3 inches apart. Bake 1 sheet at a time until cookies are slightly puffed and spread but are still soft, a toothpick should come out clean, 8 to 10 minutes. Once cookes are removed from the oven, allow to cool for a minute and carefully transfer cookies to racks and cool completely. Repeat with remaining cookie dough.

Kahlua Buttercream Filling

This makes enough to fill all of the whoopie pies. If you are a lot of filling/frosting person feel free to double the recipe – your sugar high awaits you!

• ½ cup unsalted butter (1 stick) at room temperature
• 2 cups confectioner sugar – divided into 1 cup portions
• Pinch of salt
• 3 Tablespoons Kahlua
• 1 teaspoon vanilla extract

Using an electric mixer, beat butter, 1 cup of the confectioner sugar and salt until creamy.  Add the remaining sugar, Kahlua and vanilla extract and mix until well blended.  If filling is too thick, add in drops of vanilla extract or milk.

Note: If you prefer not to indulge in alcohol (props to you!), replace the beer and kahlua with milk.

I used Guinness for the stout in the (cake-like) cookies; I did not use parchment paper since I have specific cookie sheets I only use for cookies.  (was this a mistake?)  I usually blend things by hand but followed the recipe directions, using my mixer with pretty nice results.  (but it wouldn't be hard to do by hand.)  I was able to make two pans of cookies, but put the last one in the fridge and baked the next day.  The cookies were huge, so I would recommend rounded teaspoonfuls rather than tablespoonfuls of batter.  The day 2 cookies came out looking like the cookies were supposed to, although they were still crumbly, just not AS crumbly as the day 1 cookies.  I did not have unsalted butter, so I used regular butter and did not use the pinch of salt in the filling.  The filling. is. so. friggin. awesome.  Even if I never make the cookies again, I will keep the filling recipe for the rest of my life.  Wow.  And yum.  It could probably be used for frosting a cake.

We ended up serving them like parfaits or something.

Note: For the leftovers, we put some filling in a bowl, softened it in the microwave, then added the cookie (crumbles) to soak up the warm filling.  It's not a bad way to  consume as much filling as my sweet tooth can handle.