She was an American Girl

Let me start this post by saying, once again, how glad I am that I don't have a daughter and have to deal with all this American Girl crap. There is a HUGE American Girl store here on Michigan Ave, and it seems like some kind of Mecca that these girls flock to. You see them everywhere, with their little dolls and their matching outfits. It's weird. And expensive.

The second big thing on my mind right now is the heat. The apartment will work out fine. It's close to the hospital, close to shops/restaurants, has a kitchen, etc. One thing it doesn't have is a thermostat in the room. Or air conditioning. I've been getting increasingly worried about the lack of A/C, knowing that it couldn't possibly stay just 50-some degrees and rainy the entire time...and I was right. Today? 86. I've been waiting ALL DAY (it's now exactly 3:23pm) for the A/C man to come put a window until in the apartment. He just left, and I'll let you guess where I'm sitting as I type this.

Monkey is cooling off, too

All of my appointment are done for the week. I have had blood drawn (twice), toured the blood center, had an EKG, chest x-ray, brain and cervical spine MRIs, echo, pulmonary function test, been seen by the study neurologist, an infectious disease doctor, and then finally my study doctor. Everything is all set now for Monday morning, I'm every pre-registered for my hospital admission. Monday morning I'll get checked in, admitted to the Prentice Women's Hospital at Northwestern, they'll access my port, put in a foley, give me lots of fluids and my first chemo. I'll stay overnight and get discharged Tuesday.

This is the building I'll be in when I am an inpatient

I suddenly felt like I was at the DMV

Inverted T waves, but otherwise a nice, normal EKG

I've been missing Todd and Mason so much! I haven't ever been away this long before and it is not fun. I think the worst part is knowing that in June it will be for so much longer! I hope the mobilization chemo doesn't make me feel too awful and that I'm able to go and have fun with Mason and Todd, but I know I'll be happy to see them either way. I've been able to either FaceTime or Skype with them every night, which has been so nice. On past trips we just talked on the phone the "old fashioned" way. I even have my mom hooked up with Skype so I can talk to Mason when he is there. 

By far the best part of my day!

Just three more sleeps now until my boys are here!!!!

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.

In Which Chuck Norris helps me get through the tough times

 I did see the neurologist today...the short version is brain and c-spine MRI tomorrow morning and T-spine MRI on Friday morning. Also, three days of IV solu-medrol. I'm sure the steroids will give me plenty of insomnia induced time to blog all about the long version of this story. But that will have to do for now.

So, this is really happening. I'm trying not to think too much about it because I just start to cry. I know (hope) it's just temporary, and it really does make my life a lot easier right now...but that doesn't make it suck any less.

I'm planning on naming him Texas Ranger...as in Walker, Texas Ranger (aka Chuck Norris)

Although, if this ever turns into a full-time thing, I will definitely need to get it tricked out...I found this on a site that had a "Pimp my Assistive Device" link. Who knew!

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. 

In the dark

Here's my last two days in a nutshell...

First, to start out...Monday night I went to a near-by pub to get some food and watch the football game. I was surprised to find quite a few Patriots fans there. I actually met a girl from Mass who was here for work (she works for Medi-tech).

Tuesday I totally slept in. Well, I guess considering that AK is 3 hours behind Chicago, I guess I didn't sleep in THAT late, but either way it felt awesome! Then I went over to the hospital for my lab work. They weren't able to access my medi-port, but the woman in the lab was great, and I only needed to have 3 tubes drawn this time. Then I wandered Michigan Avenue for a while, ducking into stores as needed to warm up. I did grab lunch, where the strangest thing happened to me.

Waiter/bartender: "When you figure out what you want, just write it down and I'll be back." Swear to god this is what he said as he gave me a pen and pad of paper. It was crazy. It wasn't like I had been there for very long, either. Just long enough to order a Diet Coke. Anyway, I told him that when he decided he wanted a tip to come back and take my order. He did.

Later Tuesday I had my brain and cervical spine MRI. Again, they didn't access my medi-port but the nurse did a great job starting my IV. I had taken some anxiety medication before, so I survived my time in the tube.

Today I got up and hopped on the L to Rush University. I had to cover my hair and my nails for this appointment, which was kind of strange. The neurologist is super funny and a little crazy. He did my EDSS and sent me on my way. After that appointment I went back to Northwestern to see the study doctor. He spoke with me briefly and then his nurse did the same cognitive tests I had 6 months ago. No fun!

Up until now, they have always told me what my EDSS number is. Today, however, they wouldn't tell me. I'm a little frustrated by this, I feel like I definitely have new symptoms since 6 months ago, but the EDSS is a nice way to gauge where I am. It is also what they use to determine if I can cross over into the treatment group eventually. I did get my MRI results, which were much better than last time. No new or enhancing lesions! This is the first MRI I've had that something hasn't changed since I've been diagnosed. I just wish that my symptoms would correlate with my scans.

So, now it's time to head home. One more get up :)

On the road again

Here I am, back in Chi-town. I left Anchorage on the 11:30pm flight and arrived here in Chicago a little after 8am. I love that AK Airlines does a direct flight, but holy hell is that a long flight! I did actually manage to get a little sleep, but I was most excited about the fact that I totally rocked the crossword in the AK Airlines magazine.

I am so comfortable now with the CTA train system here, which makes everything so much easier. I hoped on the blue line at O'Hare, then the red which led me almost straight to my hotel. I used Hotwire for the first time this trip, which I was a little nervous about because it doesn't actually tell you where you're staying until AFTER you've booked/paid for the room. So far, I'm pretty happy. I got a great deal on the price of the room, and it is literally looking over Michigan Avenue (home of the Magnificent Mile). My window is actually right across from the John Hancock Tower.

So, I got some lunch and crashed for a couple hours. It's now 5:30pm and I feel like I could go to bed already but I know that's a terrible idea. Besides, tonight is the big game! Pats vs. Jets! I'm planning on heading out soon to find some dinner and hopefully a big screen to watch the game on. I have to admit, though, it's really weird to not have a game come on until 7:30pm!

Tomorrow I have lab work and my MRIs. I'm also planning on doing some wandering/shopping. No big plans, but that's fine with me. It will be nice to be able to sleep in!

Of course, as fun as it is to be in Chicago and sleep in and shop...I miss my boys already. It's hard to leave Mason for sure, and it's also hard going to all these appointments alone. Todd would come with me if I asked, and he of course offered to many times, but it's more important to me that Mason's life stay as normal as possible. Besides, this time is only for a few days. It is definitely both a blessing and a curse that Mason doesn't really understand what is going on. I don't think I could handle if he cried knowing I was leaving...but it would be nice if he could understand that I'm coming home Thursday, too.

I'll update you all tomorrow.

Now for the crap

Consider yourself warned, I told you this was coming.

Long story short if that my MRI showed 5 new lesions in my brain since January. One of them is an enhancing (or active) lesion. Also, one of the lesions in my spinal cord in my neck has grown. Basically, this sucks.

The only positive in this news that I have been able to come up with (thanks to Todd, actually) is that a) it confirms that not only do I hate the MS medication I'm currently on, but it actually isn't working and b) it may explain why the last couple months I've been feeling so shitty all the time.

I know, MRI and MS symptoms aren't always connected, but it makes me feel better to think that at least this time they may be.

I also have this sinking feeling that I'm going to end up in the control group. Which will suck. I didn't come all this way and have all these freaking tests to just be sent home, but I have always known this is the way it is. It's a 50/50 shot. Flip of a coin. The control group basically goes about their business, taking any of the FDA approved MS medications and then comes back to be checked at certain intervals. All fine, except the transplant doctor really wants me to be on Tysabri as my FDA approved medication.

Google it. Tysabri. Tysabri deaths. Tysabri PML. Go ahead, I have. It scares me. Todd doesn't want me on it. It's the best med out there right now for MS, I get it. I get why the doc wants me on it. Because if I'm on something else people will argue with his study findings that I wasn't on the "best". Ugh. I'm totally stressed about it now. I really don't know what to do. Deaths aren't really occurring in people on it less than a year, and 2 years is kind of the cut off where your risk goes up and up. So, what, take it for 2 years...then what? Pray I don't get PML? Switch to some other, less effective med?

These are all (obviously) rhetorical questions. I guess that's what a blog is for anyway. Well, it's midnight here, and I haven't been sleeping well at all, but I'm going to give it a try.

Let the battle begin!

This week I was in Chicago for an evaluation for a clinical trial at Northwestern University. My bestie Mariah flew from Buffalo to hang out with me for a couple days of fun, which was fantastic! We had fun walking around in the freezing-ass cold downtown "Magnificent Mile", hanging out with the "Captain" in our hotel room, and even made it to PF Chang's for a yummy dinner. So, while that would have been wonderful enough...there's MORE!

First...I had a new MRI while I was there of my brain and neck. The last couple scans I've had over the past year have had new and/or active lesions, so I expected this one to be the same. I was AMAZED when the doctor told me that I don't currently have any active spots!

Second...I met with a neurologist at the Rush University MS Center. It was crazy to be in this place that ONLY has MS patients. Sitting in the waiting room caused a little anxiety just seeing little glimpses into what my future could possibly hold for me...but the neurologist was a really nice man and felt like all in all I was doing "ok". He did an EDSS test, which is a bunch of things that measure your overall disability. I got a 3. If you want to know more about what that means go here.

Third....I met with an immunologist at Northwestern University Memorial Hospital. Super cool guy from Montana who is leading this amazing study. Read this...it's amazing. Anyway, I meet ALL the criteria for his amazing clinical trial and I AM A CANDIDATE!!! I really went into this thinking that they were going to tell me no for whatever reason, so I was so happy when he said I qualified. In a nutshell they are harvesting the patient's stem cells, giving the patient chemotherapy to wipe out their immune system, then transfusing the stem cells back in. Basically this "resets" the immune system and the new white blood cells won't attack my myelin anymore.

What it all means........for now, at least, it means that the battle of the insurance company will begin. Basically, all insurance companies deny this at first and then the appeal process begins. Luckily, the people at Northwestern have been through this lots of times and will hopefully know just what to do. Assuming that insurance finally approves the treatment, I will go back to Chicago for about a week or two of more testing to make sure my body will handle everything. After that is one final hurdle that I have no control over...whether I'm in the "control" or the "treatment" group. The good news about the control is that if my EDSS goes up a point while on MS meds, I have the option of transferring into the treatment group.

I know this is a lot of information, and I'm sure I left tons of things out, but the main point was to tell you all that I at least qualify! So...cross your fingers for me, or say a prayer, or do a little dance...basically just send some good vibes my way, please.

1st Christmas and other news

Mason's first Christmas was a busy day, but so will all his others, I'm sure. We did have a break in the afternoon that allowed for a good nap (for me, too). Christmas was also the day that Mason became a one month old, and with that milestone, I think we've also welcomed either his first cold or he officialy has colic. (We actually went to the doctor today after a long, screaming weekend. I hate to be "that" mother, but I would also hate to be missing something. Official word...not anything major, like illness/injury, could be a cold, could be colic...helpful, right?) In more exciting milestone news, Mason has started to smile real smiles. They are so cute, and can almost make me forget how awful all the screaming has been...almost!

Here's a couple pics from Christmas. Landon is showing more interest in his cousin every time he sees him, but this was the first time he actually got close enough to touch him. He was so fun to watch! Landon was really gentle, and seemed so amazed that this little creature (Mason) had a "button" (belly button) and hair and fingers....just like he has! They both also had shirts on that said "What Santa doesn't bring me...Grandma will!" Isn't that the truth!!!
















In other news, my parents did manage to bribe Todd and I with a gift card on Saturday to get us out of the house for dinner. I think they were mostly just dying to babysit. It was hard to leave Mason, especially since he had been fussy all day and I was worried he was sick, but it was so nice to get out. I even had my first glass of wine! Mom had her surgery today to fix her Achille's tendon. Everything went well and she's home resting. I had my MRI today, without any Valium or Ativan I might add! My unofficial opinion is that it looks worse than my previous, but I'll have to wait and see what the radiologist says. More on that later.

Starting him off right....well, left

Mason continues to grow and grow. It's so much fun to watch him learning every day. He is really starting to have more awake/alert time and loves looking around at his surroundings. Of course, yesterday he spent most of the day sleeping, so he was a little confused as to why he needed to sleep at night. I'm sure we'll have many more confused nights, but man are they rough! I'm convinced that post-partum MS flairs have far more to do with stress/fatigue than they do with hormone drops. I've been good so far, although I have been having some random symptoms the last couple of days. Nothing that classifies as an offical flair up though...keep your fingers crossed for me. We'll see what my MRI looks like on the 29th.

Well, in some of his awake time yesterday, I managed to get this pic of Mason. Todd laughs about this shirt, but I just remind him that I will encourage and support our son in anything he wants to be when he grows up....except be a republican :)