Blame it on Facebook

I broke down a month or so ago and made a Facebook page. This is something I said I would NEVER do, and I actually prided myself of being one of the last people on earth without Facebook...I guess it's true, never say never. Needless to say, this has made an already bad blogger even worse!

I  do have to admit, it has helped tremendously with fundraising and getting the word about the auction out there. People I don't even know donated items to the auction, donated money, and came out to the auction as well. The silent auction was such an incredible success, surpassing even my biggest hopes for the night. The grand total for the evening ended up being over $12,000!

Yesterday I got a phone call from my nurse in Chicago. Long story short, I have to be there 4/25 now rather than starting on 4/30. It is only 3 days different from when I was originally leaving, but I just feels so much sooner now. I'm starting to realize how much I still need to get done and ready in such a short amount of time.

So much for my gut

I'm not going to lie, I did not have a good feeling about this last Chicago trip. I came very close to canceling it a few times as I felt like it was just going to be another disappointment for me that I really did not feel like dealing with.

A little background to catch up any new people (or those of you who may have forgotten how we got to this point).....

I'm taking part in a clinical trial run by Dr. Richard Burt at Northwester Memorial Hospital. Here is his website if you're interested. Anyway, in 2010 I was randomized into the "control" arm of the study, rather than the treatment arm. Control basically means you take Tysabri (an FDA approved drug for MS, supposedly the best out there right now) and get rechecked at predetermined intervals. Treatment is a stem cell transplant (currently the only thing showing any promise as a cure for MS). Needless to say, control was a disappointing group to be in.

The interesting part about this study is that there is an ability to cross-over from the control to the treatment arm if your disability score increases and stays that way after a 6 month period. This is where all my frustration has come in. Not to completely rehash all this, but basically I think the doctor who does the EDSS is completely inconsistent and, well, frankly, I think he is an idiot. So I've been in this weird holding pattern with Dr. Burt, having me go back to Chicago multiple times where I keep getting told that, no, I'm half a point away from being able to cross over.

So this leads me to this week. Another quick two day trip to the windy city by myself, which I was really not looking forward to. And then it happened. The EDSS doctor (oh, did I mention he's the only blinded participant in the study?) gave me a higher EDSS...way higher, actually. I mean, I know I've progressed and acquired some new symptoms, but I didn't think it would be much higher...not that I'm complaining.

I'm now tentatively on for an April/May stem cell transplant! There is so much to do and think about now, the most important being MONEY! (Stay tuned for more info on that)

I'm back home now, exhausted from my quick trip and barely any sleep the past 3 days, but feeling, for the first time since I began this clinical trial, hopeful. It's not a bad place to be in.




P.S. Just don't ask me how I'm going to stand being away from Mason for 2-3 months. It's going to seriously be the hardest part of this whole ordeal, I'm sure. I just have to remember that he's a major reason I'm doing the trial in the first place.

December Fun

It's seems like we've had a very busy month here around the Loy house...and it's only the 13th! I'm pretty proud of myself, by the 3rd I already had our decorations out (including tree and menorah), holiday cards mailed, shopping done, and even some wrapping complete. This is not normally how this time of year goes for me. 

I've been trying to be better about exercising again. I don't mean to use MS as a crutch, but it really does make things difficult. Between the fatigue and then my balance issues, exercise is generally not top of my priority list...then add in the heat issues I have and I'm usually out. But I've been trying, and it does (most of the time) make me feel better, so here's hoping I continue.

Mason went to his first hockey game. The Guns n Hoses game was a lot of fun, and this year it was Anchorage vs Fairbanks, and Anchorage (of course) won. We went with Cameron, Sarah and Landon, and I think everyone enjoyed it. 

Mason loved having the "cheer sticks" to bang together.
They also make great swords.

Landon enjoying his popcorn.

Face painting. He picked "fire axes and flames"

Airplane balloon.

Mason is still completely into playing with all of his birthday gifts. Especially the fire station he got. He is also turning into quite the little football fan, but his choice of teams is definitely questionable. He has decided that because his favorite color is green (and yellow, too) that he is a Green Bay Packer fan. Ugh. Oh well, at least he and Sarah can cheer on their Packers together.

Go Pack Go!

The Best of Intentions...really

I really do mean to update this blog more than I actually do. I really mean that. But, like with most things, it gets pushed aside. The problem with putting off posting things, is that by the time I get around to posting them, well, it isn't really current information anymore.

For instance, Todd and I went to the opening night of the Anchorage Symphony...OVER A MONTH AGO! I have been meaning to go on and on about how incredible it was. That it was probably the most enjoyable ASO event we've been to in a really long time. That the pianist was breathtakingly amazing. Oh, and of course, that Randy's hair was shiny and beautiful as always.

We also took a quick weekend trip up to the cabin, also about a month ago. It was mainly to get things cleaned up and ready for the winter. We don't heat the cabin, so we have to bring back anything in the refrigerator or cupboards that will freeze and/or explode. I also changed the sheets and made sure there was a good stack of wood inside that would be nice and dry for whoever heads up there first this winter. Mason had a good time, and enjoyed playing outside even though it was definitely a lot colder than it had been on previous visits. I'm hoping we'll make it up this winter, but it's hard with a little guy. It gets so cold someone almost has to go up the night before to get the fire going and get the cabin comfortable. We'll see.

Todd and I both celebrated birthdays. Todd on 9/30, me on 10/8. We kept it pretty low key, which was fine. Next up is Mason's birthday...I can't believe I'll have a 3 year old!

This weekend Todd and I are heading down to Homer for a few days. We both realized we haven't been anywhere together, without Mason, in a REALLY long time. It will be nice to just relax and reconnect.

I promise to post picture to catch you all up, as well.

Feels like I've been here before

My EDSS is still apparently a 3 (I need it to be at least 3.5 to cross over). The study physician was actually in disbelief after getting the number back from the neurologist...in fact, he so convinced I'm worse than a 3, he wants me to come back to Chicago AGAIN in 2-3 months.

This whole experience has basically left me numb to receiving news like this, although I'd be lying if I said I wasn't extremely disappointed.

Guess I'll be coming back here in January.

Until we meet again

Mason helped me through one of my infusion appointments. 

He was great company, and did a great job leaving my port alone

I thought I should do a little update about the recent MS flare I had. Three days of steroids ended up not being enough, so I did a total of 5 days. They really are just about the worst thing ever, but thankfully it wasn't all for nothing because they did actually help.

Texas Ranger is packed away. I'm hoping I won't ever need to use him again, but I'm pretty sure the reality is that he's just put away until next time. I hate to admit this, but having a walker did actually help a lot. I felt more stable walking and was able to get out of the house a little bit.

I ended up having new MRI scans done of my brain (stable), cervical spine (stable) and my thoracic spine (new lesion). Luckily these were done over two days, and my neurologist gave me xanax. I'm definitely not happy about having a new lesion, but at the same time it's nice to have a reason for this latest flare.

My next Chicago visit has been bumped up to October, rather than December. I'm not sure what the plan will be exactly, but they will do my EDSS again and I guess go from there. 

Todd was amazing (as always) during this whole thing. I can't imagine how he must feel having to sit back and watch all of this unfold, but he never lets on just how much he must hate it. He stayed home to help with Mason and got me to and from all my appointments. He even put up with me being a COMPLETE LUNATIC while I was on the solu-medrol infusions (although he later described it like dealing with a pregnant woman on meth). 

I'm happy to report that I'm back to my normal self, and I'm not longer crying or screaming randomly like I was. Of course, my normal self has it's own share of neuroses, but at least they don't include me cussing out my husband for mowing the lawn (yes, that really happened). Physically I don't feel like I'm back to "normal" (or at least what my normal was before the flare), but I'm hoping that it will continue to improve as time goes on. Or, if it doesn't, I at least hope that my EDSS reflects it and I'll get moved into the treatment arm of the Chicago study.

Still waiting

I'm still waiting to feel better. Right now, I'm stuck in the steroid craziness. Mood swings, vertigo, heartburn, exhaustion, insomnia, confusion, hot flashes, irregular heart rate, hunger, crying, flushed face, forgetfulness, nausea, joint pain....plus all the MS symptoms I took the steroids for in the first place.

I did manage to make it out a little today. Todd, Mason and I all ventured out for two quick trips. I did take Texas Ranger with me, and even though it is probably one of the most embarrassing thing I've ever done, I'm glad I took the damn thing with us so I could at least walk around a little bit. And Mason thinks it's fun to sit and ride on it. (Oh, to be a kid again)

Right now I'm planning on trying work again tomorrow. We'll see how it goes, I guess. Thursday is my normally scheduled Tysabri infusion and if this hasn't gotten significantly better (i.e. no longer using Texas Ranger) I will be having a long conversation with both my neurologist here as well as the study team in Chicago.

I am trying to remind myself that while in the past the steroids have helped faster than this, my past flares were not nearly as severe as this one.

There goes that

Summer didn't seem to last very long this year. Not that Alaskan summers ever really do. I suppose it was definitely better than last year, but it's only August 7th, and there is already talk of termination dust on the mountains. These pictures weren't even a month ago, when it was warm and sunny enough to play in the pool outside....but if the last week of rain is any indication as to how August is going to treat us, I'd say it's safe to pack it away.

Fun in the sun

Look at me go, Mommy!

Beach ball fountain

Even my girlfriend Atalaya came to check out my pool 

Driving in my new playhouse 

This slide is fast!

Learning how to pump my legs on the swing

Having a talk with Daddy

More random news

The summer seems to be in full swing, and the weather is even trying to cooperate. Mason is so happy with all the time we get to spend playing outside, especially now that he has a new bike to ride. I was worried it would be too big for him and he would just get frustrated, but it turns out he's a natural! He loves to go around the cones in our driveway and have Todd wave the checkered flag for him.

Helping Papa put his new bike together

Having fun

This summer has been my worst allergy summer in a LONG time! I just finished my THIRD round of antibiotics trying to get rid of whatever is going on in my sinuses/ears. I have been put on a new oral allergy med, new allergy eye drops and a new allergy nose spray. I called back in April to see the allergist again but my appointment isn't until August. Bring on the benadryl until then!

I am totally counting down the days until I go to CA to see my friend Mariah. I got my ticket for the Sonoma County Shuttle in the mail and now I'm even more excited. Petaluma, here I come! Oh, wait, it isn't July 13th yet? Damn.

Duncan had his blood levels rechecked. It's been six months since his dough eating ER visit. As expected, the damn dog is indestructible, and that includes his liver. Everything was back within normal ranges. 

We had fun on the boat this last weekend. I'll try to get pictures up soon.

The rest of the story

So here’s the long story of my awful day yesterday. I started out heading to Rush University Medical Center for my appointment with the neurologist. He is the one who doesn’t know which group patients are in and just does the disability score. When I started the trial a year ago, I was at 2.5, then in December I was at 4. In order for me to be able to cross over into the treatment group, my EDSS needs to be at least one point higher than I started. 

Going into this I knew that the EDSS isn’t a perfect system, but they have to have some way of measuring and rating each patient. The biggest frustration for me is the doctor who performs the EDSS rushes through the entire thing, and doesn’t seem to pay much attention to what you’re telling him. For example, as he’s going through checking boxes, he says “You don’t have _____” and moves on. Well, no, actually I DO have that. Anyway, it’s a super frustrating experience. And to make it even worse he gave me a 3. 

I left his office in tears and called Todd from the sidewalk outside the hospital. I just really didn’t want to keep doing this at that point. I managed to get myself together by the time I got back to Northwestern Memorial Hospital for my appointment with the study physician. Since I had time, I picked up a copy of my MRI (it is actually pretty stable...more on that later). 

Now for the super embarrassing part. As soon as Dr. Burt (the study doctor) walked in the exam room, I burst into tears again. Even as I write this I’m getting teary-eyed. Ugh. It’s like I broke a valve or something and now I can’t stop! Ok, back to my appointment. He understood my feelings (or at least seemed like he did) and the nurse was also extremely sweet and understanding. He even said that this is the reason he has nothing to do with the EDSS or deciding who is or isn’t in the study...he believes in what he does so much he wouldn’t be able to say no to people. I can’t imagine having his job. Knowing you can CURE something, but not have the ability to do it to everyone. 

The worst part of my number, especially since it was SO CLOSE, is that I feel EXACTLY the same as I did in December! By this logic, the damn number should be the same! I guess this is where the human factor comes in. Nothing’s perfect. Blah blah. I guess I would feel better about the fact that my MRI was still stable if I felt better. What’s the point of having no new or active lesions if I still stumble when I’m tired or get cramping pains in my leg or cant’ feel my hands at work half the time. It’s also bad when Dr. Burt asks me to walk a straight line (heel/toe) and says, “Did he (meaning the EDSS doctor) see you do that?” I know, lord help me if I ever get pulled over! I can hear my mother now telling me to “look at the bright side”, but I’m having an incredibly hard time doing that right now. Maybe I’ll get there, but I’m not there yet. 

 I’m not sure if Dr. Burt just felt bad for the crying idiot or what, but now the plan has changed a little. By the study protocol I shouldn’t have to go back to Chicago for another year now, but he is going to have me come back again in six months. I think he wants to give me another chance if in fact I still feel, or am, worse to get into the treatment part of the study. I’m tempted to lie next time I have my EDSS done. 

So for now I stay on Tysabri and try to get out of this little funk I’ve gotten myself into. Let’s just say, I’ve never been happier to be home and get a hug from Todd and Mason as I am today. 

Horseshoes and hand grenades

I'm really not in the best mood tonight. I was off by 1/2 a point to transfer into the treatment group. HALF A POINT! I'm actually not really in the mood to talk (or write) about it yet, so this story may have to wait until a later date.

Long story short, I'm coming back to Chicago in 6 months. I'm SO ready to be going home tomorrow morning. And I have a headache from all the crying I did earlier today.

Hot Time in the Old Town

Holy hell is it hot in Chicago! Apparently, summer decided to greet me on my trip this week. Talking to people today, this crazy weather just started...and boy is it hot! Today was in the mid-90s (96 degrees was the hottest I saw) and I saw that tomorrow is supposed to be over 100!

I don't see myself getting out much on this trip. This kind of heat, coupled with the super high humidity, really aggravates my MS symptoms. I have to go downtown tomorrow for my lab work and MRI, so hopefully there will be enough shops around with AC that I can duck into to cool off. I did head down the street tonight and got my mani-pedi done. On my way back I picked up some dinner at Noodles & Company and brought it back to the room. YUM!

Talked to Todd and Mason for a little bit. They are doing the "how many sleeps" countdown for Mama to come home. Only 3 to go! Last night Mason had to spend the night with Nana and Papa, and he slept in the "big bed" for the first time. He has always slept in his pack and play over there, but now we put a side rail on the bed in the spare bedroom for him. My mom said he did great, and sent me some cute pics this morning of my happy boy waking up.

Lincoln Park After Dark

I'm back in Chicago for my one year follow up. I'm really trying to not make a big deal out of this trip, but in reality, it is a pretty big deal to me. In December when I was here for my 6 month testing, my EDSS was up to 4...which means that if it is still a 4 on this trip, I can transfer over into the treatment group. Needless to say, being in the treatment group is what I ultimately want. I just remember how disappointed I was last year when I found out I was in the control group, so I'm trying not to get my hope up again and make a big deal out of this trip.

I'm only here until Thursday morning when I have to take that incredibly long flight back home. No real plans aside from my testing tomorrow and doctors appointments on Wednesday, but I'm staying in Lincoln Park again so there is definitely no lack of fun things to see and do. I love this neighborhood, and it's still so close to downtown where all my appointments are. One thing I have to do before Wednesday is get my nails painted...and because I'm so terrible at DIY manicure, I will definitely be heading out to a nearby nail salon. Hopefully they'll have my favorite nail color by OPI...Lincoln Park After Dark!

P.S. I really do have to have my nails covered for my appointment with the neurologist on Wednesday. He is the only one who doesn't know which group I'm in, and since chemo patients get a line on their nails and lose their hair, I have to cover them both when I go see him.

That place is still open?

Last weekend my little Bug turned 9! She had her birthday party at Dimond Skateland this year...much to my surprise, yes, it is still open. Even more to my surprise was that I strapped on some skates and didn't fall on my butt! It kind of came back to me, even after all these years. Even Mason put on some skates for a try.

Happy birthday, sweet Bug! Hope 9 is the best year yet!

Here we go!

Look at me! I skate, Daddy!

Having fun still

My little ladies man had to sit next to the birthday girl.
And, as you can see, with ALL the girls!

We don't let Mason have soda, but I'm not sure a slushie
is much better. At least there's no caffeine. Of course,
he wanted a green one. Everything has to be green lately.

Get Golf Ready

Honestly, where was Hermione Granger to make being a nerd kind of cool when I was a kid? I need to find a picture of me around this age to post. You'll die! Frizzy hair and all!

Last summer, Todd took me to the driving range a few times. I was hesitant at first, but I really liked it! We ended up buying a cheap, beginner set of clubs for me last year, and of course I had to get golf shoes, too.

This year a friend told me about a Get Golf Ready program that the Anchorage Golf Course was doing. It's five, 90 minute lessons that basically go over basic rules and protocols. Last week was my first lesson, where we practiced our putting. I'm happy to report a few of my putts even made it in!

I was worried before going to my lesson, I guess nervous is a better word. I didn't want to be the worst one out there! The same friend that told me about these lessons also had given me a little pink book last summer called "Feeling Naked on the First Tee". Thanks to this little book, I knew all the answers at my class. Like, what does par 3, 4, or 5 mean, or what are the different colors at the tee box.

I'm excited for this weeks lesson. We're going to get into the bunkers (sand traps) and learn how to get the ball out of them.

I'm a total nerd. But I'm ok with that.

A Little More Human

I have been sick all this week. It actually started a little over a week ago, just the scratchy throat feeling like my sinuses were acting up. Mason had been sick the week before, so I wasn't really surprised. Then on Monday at work, my voice started to crack and sound something like a 12 year old boy sounds like, and by Monday night it was pretty bad. Tuesday morning I woke up with no voice at all, but I actually didn't feel too terrible.

By Thursday when I still didn't have a voice, and was starting to feel like complete garbage, I went to the doctor. She put me on antibiotics, gave me some super strong cough syrup, and sent me on my way. Today is Saturday and I'm just barely starting to feel a little better. My voice is back, although it still sounds deep and nasally. I'm not sure if the antibiotics are doing anything yet or not, but they sure do make me feel sick to my stomach.

All I really want to do is stay in bed and sleep, maybe wake up long enough to catch up on some Real Housewives drama on Bravo. My reality, unfortunately, is that Todd is at work all weekend so I'm left at home with Mason. Luckily, he's been fun and happy...and he's of course thrilled when I let him watch a movie at night (little does he know it's actually for my own lazy benefit)...but he isn't very sensitive to the fact that Mommy feels like crap! He can always manage to make me smile, though, like earlier this week when he was rather interested with where Mommy's voice went, and tried to find it for me.

Fun in the sun

Yesterday, we rented a car for the day and ventured around the bay to the Vallarta Zoo. I didn't really know what to expect, but I have to say it will definitely be on my list of recommendations for people traveling to this area with kids. It was cheap (they only charged for Todd and I) and for under $5 you could buy a bag of different foods to feed the animals with. Mason was a huge fan of feeding the different animals, especially the monkeys! The only problem is that I'm afraid now he will be expecting to do this at home next time we visit the AK Zoo.

In other news, not much to report other than more sun and sand :) Not a bad way to spend time, if you ask me. Mason did ask today to go back to his "old home", but he luckily got over it pretty quickly. One thing about being here, he is so exhausted by the time he goes down for nap or night time, so his patience (and mine) have been a little thinner than usual. But like Todd said tonight, the times of seeing his sheer joy and elation over the simplest things here totally out-number and out-weigh the tantrums he has.

Here are a few (ok, ten) more pictures....I have taken SO many on this vacation, I'm actually impressed with myself. I think a lot has to do with the fact that I have such a little cutie to take pictures of now, and a lot also has to do with my awesome new camera that is so fun to play with. Pretty sure I'll have to put a slideshow together when we get home to share them with everyone. Don't worry, unlike these, they really aren't ALL just of Mason.

Another disappointment when we get home will be going back to a normal sized tub

My goofy boy getting ready for bed

He is obsessed with all the fountains here (he can't say fountain, and calls them "mountains")

Feeding a llama

Todd looks a little nervous feeding the antelope

Anyone know a three letter word for flightless bird (sorry, I'm a crossword nerd)

The zebras were surprisingly hungry

Look at the tongue on that thing! This giraffe was so gentle. It was my personal favorite

Mason loved the monkeys. And he was so impressed they could open the peanut shells

One happy kid at the zoo

Out of the office

The Loy Family is currently out enjoying some sun. Here are a few pictures to hold you all over until our return.

New Ride

Mama got a new car! If you ask Mason, he'll tell you that Mama's car broke and needed a tow truck. Neither of these things are remotely true, but Todd and I did trade in my Passat yesterday for a 2010 Highlander. I LOVE it! It has so much more room and I'm higher up off the ground again. The Passat was a great car, but I'm so much happier now.

This is the pic from the Kendall website of it. Mason was so excited to ride to school this morning in Mama's new "truck".

Minimalist

I've been trying to write about our last symphony concert for a couple of weeks now.

I'll start with the easy part...the actual concert. I have to admit, it left Todd and I both with a kind of "eh" reaction. It wasn't that it was particularly bad, with the exception of some french horn issues, it just never seemed to really take off. The oboe soloist was good, but the piece didn't really do much for me. While I wasn't terribly impressed, I am always amazed by anyone who can play the oboe (or any double-reed for that matter). When I try to describe to people what having asthma is like, I describe it as trying to breath through one of those tiny, red coffee straws. This is also what trying to blow through an oboe reed is like. Not easy.

As always, though, it's so nice to get out of the house with Todd, just the two of us. Our favorite babysitter, Ashley, came over to watch Mason. Actually, Ashley is our only babysitter, but this doesn't take away from her awesomeness at all!

And now for the hard part...Randy's hair. We all know by now that swooning over Randy's hair is my favorite part of having season ASO tickets. It's ok, Todd has come to terms with my little love affair. You can imagine my great shock and disappointment when Randy walked onto the stage with his new, very short haircut. I think I literally gasped. I'm still upset about it. My only hope is that by the time March rolls around and we have our next concert I can look forward to one, the return of Violin Boy and two, the quick regrowth of Randy's hair.

Until next time...