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| My new running buddy |
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| Who could resist that smile? |
May 3, 2012
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.
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.
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.
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.
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.
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| Monkey is cooling off, too |
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| This is the building I'll be in when I am an inpatient |
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| I suddenly felt like I was at the DMV |
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| Inverted T waves, but otherwise a nice, normal EKG |
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| By far the best part of my day! |
Just three more sleeps now until my boys are here!!!!
April 28, 2012
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.
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.
April 26, 2012
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!
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!
April 14, 2012
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.
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.
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