They say it's your birthday!

Ok, technically it was Monday, but I haven't really been feeling up for much this week.

Here's a recap:

Sunday was a horrible night. Then Monday night got even worse...with kind of a big deal in between.

Monday morning around 10am my stem cells were transfused back to me. It was actually all very anticlimactic, and only lasted for about 30 minutes. I was completely exhausted and nauseated, but still managed to take my new "self" for a little stroll around the halls with Todd before going back to bed.

As Monday went on, my nausea got worse and worse. Nothing I put in my mouth ended up staying in and non of the anti-nausea medications seemed to be touching it. Monday night when they came to do vitals, they discovered a fever of 101.9, which set into action a flurry of blood work, chest x-ray, cultures, etc. and a phone call to the on-call physician.

After all that, Tuesday was a very slow day. I did nothing but sleep, or at least it felt that way. I've honestly never felt so just sleepy before! I am now on two different anti-biotics, an anti-fungal, anti-nausea, a scopolamine patch, and steroids, too. Along with another handful of pills...not wonder my stomach is so queasy! My temperature is back down to normal, and (knock on wood) today I've not needed my puke bucket at all. Not to say I don't still keep it close by, but these things take time.

It's been a week now of being in the hospital, which seems to have gone by fairly quickly, probably because I've been so miserable the whole time...and since today is only +2 (day zero is transplant day) I've got at least a good week left.

My counts this morning still show that I'm totally depleted of white blood cells, and the guess is that tomorrow I will probably require a red blood cell transfusion, which seems to be right on par with what is expected. Now is time to shower while I'm still unhooked from my IV pole and maybe take a little pre-dinner nap :)

Gotta pass the time in some way

My dad, uncle and cousin took a quick detour on their
motorcycle trip to visit me on Sunday morning

It's happening!

This is the stem cell guy. He basically brings them in and
thaws them. Big job, I know.

My new cells going in

My BFF never left my side

Todd and I during the transplant

So now I have two "birthdays". October 8th, 1979 AND June 11th, 2012!

The Time

I started this post a week ago when we got to Chicago again...then things got a little crazy and I never finished it. I'll post it anyway, but just know it isn't exactly a complete account of really anything.

No, this post isn't about any girlie time so don't worry. I've really been bad at keeping this up...and I am still totally blaming Facebook! I think anyone who actually reads this is probably friends with me on FB and already knows what's been going on. I'll do my best to catch you all up, though.

The neupogen shots were HORRIBLE. Well, not the shots themselves, but the joint pain was more intense than I even know how to put into words. For anyone who knows me I'll just say this, I let Todd push me around (in public) in a wheelchair. So there's that.

We managed to have fun with Mason in Chicago, though. I thinks it's safe to say the kid has been introduced to city life...and was very ready to go back to his "blue house" and yard!

My stem cell collection was more than amazing. Dr. Burt only requires 2 million for the transplant and I collected over 29 million in just 4 hours of the machine. After that news, we changed out flights home as soon as we could!

Just like everything else on my treatment calendar, my hair fell out right on time once we were home. And by saying it fell out in clumps doesn't even do it enough justice! We wasted no time in buzzing what was left off, and even Mason joined in on the fun. I have to admit, he looks pretty darn cute with a buzz cut :)

Take me out to the ball game!

Today was Mason's first baseball game. He was really looking forward to his trip to the real Wrigley Field. We had fun and he did great considering the game was during what normally would be nap time.

I'm afraid I spoke too soon last night about not feeling too terrible. The nausea hit hard last night and didn't let up until this afternoon. I'm feeling better now on the nausea front, but the tiredness is still hitting me. Trying to rest as much as I can between having fun with my boys.

Here's some pics from today.

Waiting in the subway

Family fun (including Monks)

Pretzel time!

Go Cubs Go

Goofy boys

7th Inning Stretch

Mason loves his new Cubs flag

Sorry, Red Sox. 

Went to check out the Lego store after the game

Together again

My family is all together in Chicago now. The boys arrived Sunday morning to a mommy/wife that was very excited to see them. Mason had his first ride on the subway...just like Curious George! He was exhausted from the red eye (he only slept for about the last hour of the flight) and crashed pretty well in the apartment.

Monday I let him sleep in and went to check into the hospital. There was some initial confusion about which room I was going to be in, but it was soon squared away. After Todd and Mason were up and fed, they brought me coffee and caught the tail end of my visit with the nurse practitioner that works with Dr. Burt. I got started on an IV of fluids first, had the dreaded foley catheter placed (which actually wasn't as bad as I thought) and they started Mesna. Let me back up, the foley is because the type of chemo they're giving me can stick to the wall of the bladder and cause damage. The mesna is a medication that protects the bladder, and the fluids and lasix keep you hydrated and peeing, but sense I have bladder issues from MS, the foley ensures that everything is being flushed out.

About a half hour before the chemo starts, they pre-medicated me with lasix, two anti-nausea medications, and a steroid. Then the cytoxan (chemotherapy) was started. The boys were back in my room (after Mason's lame attempt at a nap) just in time for the first chemo to be started. It was an easy two hour infusion, but I was glad they were there for part of it. The main immediate side effect I had was being really hot. Probably from the steroid more than anything, but it was really uncomfortable.

Mason and Todd brought dinner back to the hospital room and Mason snuggled with me and watched a movie on my laptop while we enjoyed our pizza from Gino's. They left to get Mason in bed, and I had a pretty uneventful night of trying to get some rest in a hospital. I had a little nausea that was treated quickly before it got bad, and between a 1am blood draw and lasix dose and a 5am check of fluids and vitals, I actually slept pretty well.

Tuesday morning (today) Dr. Burt and the nurse practitioner Amy came in the morning during rounds and ordered another dose of the pre-chemo anti-nausea medication to try to help avoid any further nausea for tonight (fingers crossed, so far it seems to be working). After I was given my discharge instructions and medications to start this weekend, I just had to wait for the mesna to finish running through the IV and to be disconnected from all my "hoses" as Mason calls them. I was back in the apartment in time for lunch.

I was more tired today than I expected, so I took an extra long nap while Todd and Mason went out exploring. It was nice to just relax today in our apartment. Mason needed a few extra snuggles tonight from mommy, especially at bed time, to convince him that I wasn't going to sleep at the hospital again, but he seems to be sound asleep already as I type this.

Tomorrow is our Cubs game, which should be fun. Then we have a whole list of places we want to go see before we head back home. Here's some pics to enjoy for now...I need to get the ones off of Todd's phone, too. He has some cute ones as well.

Super tired on the subway

Excited for his new tent in the apartment

My hospital room

Keeping mommy company

Chilling again with mommy

Chemo, Mesna, Zofran and fluids 

Monks helping out with the infusion

My room had a gorgeous view of the lake and part of Navy Pier

Motivation

Todd has been sending me pics of Mason and things they are up to back home. One pic he sent me was of Mason at his preschool. They put on a mini Heart Run last week and Todd went to watch the "race". This picture is now going to be the one that I use when this gets really hard or when I feel like "why did I do this" to remind myself exactly what I am here for. I would give anything to be able to run with my boy.

My new running buddy

Who could resist that smile?

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!!!!

Home Sweet Home

I was able to move into the apartment I'm renting today. It's pretty bare boned, but I think it will work. I went grocery shopping for a few things...I am so thankful for a kitchen, even if it has no spices, no olive oil, no hot pads, etc. Tomorrow I'm going to check out Crate and Barrel, and maybe a few other places to pick up some needed items. I told Todd it feels like college again, needing quarters to do my laundry :)

The biggest downfall to the apartment is that, since it's in such an old building, everyone is on the same thermostat. Today was chilly and windy, so opening a window or two did fine, but I am concerned about what will happen once the weather warms up. A fan is definitely on my list, too.

I did find a Barnes and Noble today that is sort of near-by. There used to be a great Borders right on Michigan Ave, but like all the others, it closed. I'm feeling a little bored, which seems silly to some people, but the truth is that 1. I've been here a dozen times and 2. I can't physically walk that much.

I now have a mailing address, for anyone that is interested. It is: 900 North Dewitt Place. #806 Chicago, IL 60611

Just one more day of being a slug and then I'll actually have appointments to go to, and once that all starts I'm sure I'll have more to tell.

Tulips and Pee Pee Puddles

I'm back in Chicago now, although this time is THE time. It all still seems pretty surreal, I've waited so long for this transplant to actually happen, it sometimes feels like I'm just waiting for the other shoe to drop. Someone to say, "Oops, sorry. Go back home. Not this time."

I arrived yesterday morning after flying the red-eye from home. When I got to the hotel they didn't have a room ready for me, or so they said. As I was hanging out after I got breakfast, I heard them check in quite a few other people. Anyway, I left the hotel for my appointment with the neurologist, hoping that by the time I got back a room would finally be ready. I was so exhausted by the time my appointment rolled around it was pretty pathetic. Apparently, what I should have been doing this whole time of waiting for my EDSS to go back up was just fly overnight before my appointment. My EDSS was the same as it was when I was here in January...my first green light.

As I was hoping for, my room was ready when I got back to the hotel. I immediately poured myself a drink from the minibar, took a much needed shower, ate lunch and crawled into bed. I've started watching both "The Good Wife" and "GCB" on this trip, so that took up some more of my time until I figured I should venture out for a Walgreens trip and dinner. Oh, did I mention that the day before I left I started getting a major cold? I'm keeping my fingers crossed this will ease up and won't affect any of my testing next week. Besides, it's a great excuse to be lazy this weekend!

While I was walking around last night, I noticed how many tulips are already in full bloom here, and thought back to my own flower bed full of tulip bulbs at home. I wonder if they'll be blooming when I go back home at the end of May. I also laughed a little to myself about life in a big city, where puddles on the sidewalk are sometimes more than just slightly questionable...you never know if you're about to step in some leftover rain water or some homeless person's urine. A gross thought, I know, but what can I say? It's the truth.

I didn't get a best night of sleep, the combination of the time change, my late nap, this cold that has left me without the ability to breath properly through my nose, and just generally missing my boys I left at home. Hoping tonight will be better, and if it isn't, I'm fully prepared to NyQuil or Benadryl myself into a more appropriate bedtime and restful sleep.

No more testing for me until Monday, when my week of appointments begins. So until then I fully plan on resting, relaxing as much as possible, and counting the days until Mason and Todd arrive. I promise to be better about blogging this experience, both for anyone who cares as well as for myself to look back on someday when it's all over, so.......stay tuned!

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.

It's really happening

I officially have airline tickets for the first part of my Chicago adventure. And, thanks to my mama for the companion fair coupon, Todd and Mason have their tickets to come for part of the time. It's feeling all so CRAZY and REAL now!!!

Mark your calendars!

It's finally all starting to come together. This week I heard back from Chicago with some tentative dates for my transplant. As exciting it is to finally have a date, it also makes it very real and very stressful. I feel like I have so much still to get ready and figure out before April 30 (that's the first day of testing on my schedule, I would actually go down the day or two before). I also am feeling the stress of having a person there with me. It's a lot to ask of people, and there are only certain people I would want there anyway, but I have to have someone with me.

Today we also got confirmation on a place for the silent auction!!! This has been stressing me out as well because I have all these people willing to donate, but I haven't had specifics to give them yet. Anyway, MARK YOUR CALENDAR and please help SPREAD THE WORD! The silent auction will be April 7th at the Quarter Deck in the Captain Cook. I'm still thinking about a timeframe, we have the room from 5-10pm...so in there somewhere :)

Help

Ok, I'm still trying to get a silent auction together to help raise money for my transplant. Here's what I need (please spread the word)

First, I need a place to host the silent auction. Any ideas? Obviously, I would like to have this donated as well, but I understand if that needs to be negotiated.

Second, I still need items to be donated to auction off. Please contact me ASAP if you have something or know a person or business that would be willing to donate.

I am open to any and all ideas at this point. I am already so thankful for the money that has been donated on my go fund me site so far. Every little bit helps, and I thank you all so much.

Adventures in Stem Cells

I am trying to get the fundraising ball rolling for my upcoming transplant. My first step has been to create a Go Fund Me page. Here's the link to it. I hope you'll consider donating, and feel free to share this link and spread the word!

http://www.gofundme.com/e5guo

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.

Groundhog Day

Sometimes I seriously feel like I'm stuck in some crazy cycle that keeps repeating itself...like in the movie Groundhog Day.

Oh, did I mention I'm back in Chicago?

I got here this morning after another long 6+ hour flight. I did use my first free MVP first class upgrade for this flight, and I'm hoping to have the same luck on the way home.

More than that, I'm hoping to have better luck here this time around. I'm really tired of these trips, especially when it keeps feeling like it's all been such a waste of my time.

Here we go again...

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.

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.

Melting

This about sums up how I'm feeling today in this crazy heat. So much for my plans of shopping and going to the driving range and more shopping...it's too freaking hot and humid to do much of anything!

Oh, what a world. What a world.