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 :)

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!

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.