Lesson learned from prior posting: do not post long, depressed blogs super late at night. One should be sleeping. The outcome is the previous blog, typos and all. Oh well.
Since I left you with that lame post, not a whole lot has changed. I had my final tests Thursday, which both went very well. I apparently have fantastic lung function, which is funny to me since I used to smoke and I have asthma. Who knew?
Friday afternoon Todd and I took the train out to Wheaton to visit Todd's cousin and family. Wheaton is a really cute suburb, and we had a fun time. Todd's cousin (Tim) and his family were welcoming and a great distraction. I would also like to say on record, that they have the 2 most well behaved and mannered children (while still allowing them to be and act like children) I have ever had the pleasure of being around. I will try to post pics later.
We are now back in Chicago and I'm going crazy not knowing what is going to happen to me. I just want it to be Wednesday already so I can get "the call" and go from there. Today there was a crazy loud thunderstorm, complete with lightning and lots of rain. The rain has stopped, but today I think its the first day since I've been here that I haven't thought I was going to die of heat stroke.
May 31, 2010
May 26, 2010
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.
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.
The lighter side
So, before I doom and gloom this blog with my crappy MRI results and all my stress surrounding this trip...let me share some funny, or at least not crappy stories of things that have happened so far.
You all know I'm an Avs fan...and now that Lappy is with the Flyers, I have a special place in my heart for them too...but I am actually hoping to see the Blackhawks win the Cup. So, you can imagine how AWESOME it was today that I got to see this outside of the Art Institute of Chicago.
You all know I'm an Avs fan...and now that Lappy is with the Flyers, I have a special place in my heart for them too...but I am actually hoping to see the Blackhawks win the Cup. So, you can imagine how AWESOME it was today that I got to see this outside of the Art Institute of Chicago. And, I didn't take a picture of it, but I saw the funniest shirt I've seen in a long time on a chick walking down the street the other day. It said (and I'm serious, I can't make this shit up) "BLACKHAWKS WHORE...I'd take one for the team". I seriously almost died laughing!
As far as seeing a game......ha! They start the finals here on Saturday, and also have a home game on Monday. Seats, correction, tickets for standing room only are starting at $300 each! So, unless someone would like to make a contribution toward the Loy family Stanley Cup ticket fund, I will be watching the game at some crowded, gross bar like everyone else.
One huge difference between the Magnificent Mile in January vs. May is the amount of people on the street asking for you to sign this, donate to that. Seriously! The SPCA people are out in full force right now! Why weren't your animal rights so damn important back in January? Actually, I don't mind the SPCA, I just am super annoyed with being hounded on the streets.
Today, another funny thing I did, was wave to a fire engine. Ok, let me back up. At home, the chances of me knowing who is driving the fire engine is extremely good. And sometimes, it even turns out that I'm married to one of the guys in the truck. So, it's kind of a habit, especially when I'm downtown. I'm sure these guys thought I was some fireman-crazed woman, but really, I am just used to saying hi to people I actually know! I promise!
I'm sure there is other stuff I'm forgetting, but this will probably do it for now.
May 24, 2010
Day One
Today I had my first day of pre-transplant testing. These tests are all basically just to make sure that if I receive a transplant my body is healthy enough going in to handle the chemotherapy. It was a long day, mainly because I was really tired all day today. I didn't sleep very well last night, and I had to be at the hospital at 8am today. It's really weird, and a little surreal to be on the patient side of things. Not that I've never been a patient before, it's just that at home, I know Providence like the back of my hand...here, not so much. Northwestern is a HUGE facility. Huge. And I don't know every other person I see in the hallway like I do at home.
Which leads me to my biggest WTF moment of the day today...Northwestern is not a latex free facility! Really? In 2010 there are still latex gloves EVERYWHERE! Every place I went I had to say "I'm allergic to latex" and watch as they went to get a box of vinyl gloves. Yeesh! Luckily my allergy isn't very severe, I can't imagine if I had a full blown, throat closing type of reaction. I'd be totally screwed.
So here's the list of what I had done today...and why...
* blood draw....they drew (not kidding) like 20 tubes of blood. They are checking for a million things,
including clotting factors, pregnancy, hepatitis, HIV, other viral things like CMV, HSV, etc.
* sinus CT...this is just to check to make sure I don't have a sinus infection before chemo. If I have one,
it's no big deal, they just know to treat it first.
* chest x-ray...basic check of heart/lungs. No TB, pneumonia, etc. Also gives them a good baseline.
* dental exam...same idea as the CT, just making sure there aren't any dental issues that need to be
addressed before chemo/transplant.
* EKG... checks for rhythm abnormalities.
* vein check...this is nothing like what it sounds like. Basically I just met with the people in the blood
center (like the infusion center at home, but all they do is blood and blood products). They explained
about the central line I'll have placed and showed me the machine they use to harvest the stem cells.
I think that's it for today. Up next...MRI of head and neck. NOT my favorite thing at all, but I have my Klonopin ready on hand!
Chicago is lovely. So different than when I was here in January. It's a little too hot and humid for my taste, which is keeping me from doing a whole lot of exploring at this point, but as long as I take frequent AC breaks my MS symptoms seem to be staying in check. I of course miss my boys like crazy. It's the hardest part of this whole thing to be away from Mason, but it's important to both Todd and I that we keep his life as normal as possible through all this.
That's all for now...to be continued....
Which leads me to my biggest WTF moment of the day today...Northwestern is not a latex free facility! Really? In 2010 there are still latex gloves EVERYWHERE! Every place I went I had to say "I'm allergic to latex" and watch as they went to get a box of vinyl gloves. Yeesh! Luckily my allergy isn't very severe, I can't imagine if I had a full blown, throat closing type of reaction. I'd be totally screwed.
So here's the list of what I had done today...and why...
* blood draw....they drew (not kidding) like 20 tubes of blood. They are checking for a million things,
including clotting factors, pregnancy, hepatitis, HIV, other viral things like CMV, HSV, etc.
* sinus CT...this is just to check to make sure I don't have a sinus infection before chemo. If I have one,
it's no big deal, they just know to treat it first.
* chest x-ray...basic check of heart/lungs. No TB, pneumonia, etc. Also gives them a good baseline.
* dental exam...same idea as the CT, just making sure there aren't any dental issues that need to be
addressed before chemo/transplant.
* EKG... checks for rhythm abnormalities.
* vein check...this is nothing like what it sounds like. Basically I just met with the people in the blood
center (like the infusion center at home, but all they do is blood and blood products). They explained
about the central line I'll have placed and showed me the machine they use to harvest the stem cells.
I think that's it for today. Up next...MRI of head and neck. NOT my favorite thing at all, but I have my Klonopin ready on hand!
Chicago is lovely. So different than when I was here in January. It's a little too hot and humid for my taste, which is keeping me from doing a whole lot of exploring at this point, but as long as I take frequent AC breaks my MS symptoms seem to be staying in check. I of course miss my boys like crazy. It's the hardest part of this whole thing to be away from Mason, but it's important to both Todd and I that we keep his life as normal as possible through all this.
That's all for now...to be continued....
May 23, 2010
May 22, 2010
18 months!
I know, three blog posts in one day...stop the insanity!
Anyway, I will miss the actual day, but on Tuesday Mason will be 18 months old. Talk about insanity! As most of you probably know, we did monthly pictures for his first year, and now we've graduated to every 6 months. Here's a peek at the pics...not sure what's up with the tongue, but as you can see, he was sticking it out in over half the shots!
Happy B-day, Bug!
We also spent some time last weekend at our favorite little girl's birthday party. I can't believe my little Bug is already 8! Mason had a blast at her H2Oasis party!!!
Summertime...almost
Our weather has been so crazy the last few months, but it seems as though summer might have finally reached Alaska. Mason LOVES being outside. Actually, loves isn't even a strong enough word for how crazy this child is about being outside, but I don't really have another word in my vocabulary at this moment to describe it. We have been spending lots of time in the yard, going for walks, blowing bubbles, playing at the park, etc, etc, etc.
Mason still also loves his daycare. He still only goes two days a week, but we are thinking about increasing to three once he is able to move up into the toddler room. Speaking of the toddler room, Mason is currently in the baby room, which is from 6-18 months. He is the oldest kiddo in there, and by far the most active, so he gets a little bored sometimes. Now that he's 18 months he will start transitioning into the toddler room, where he'll be once he's 19 months. He is so fascinated by the toddler room, we have a hard time in the mornings having to walk past it to get to the baby room. Friday he actually spent all day with the toddlers, and even got to be the Shabbat helper! I wish I could have seen it, it sounds like he was super cute up with Mr. Joe lighting the candles and saying the blessing over the Challah.
Being back to work at the hospital has been great for me. I was super nervous going back, I was really afraid that I had forgotten everything, but that didn't happen. My schedule is set now, which is SO much better for me, and if I want more than 20 hours a week I (so far) have no problem getting extra hours. I really feel like I'm using my brain again at work, which is something I was definitely lacking before. The only downside is that all that brain usage leaves little time for reading at work, so my book consumption has decreased significantly since I'm not at the clinic anymore. It's a good trade off.
Here's my little man, learning to blow bubbles in the yard. He's actually pretty good at it, as long as it's with this small bubble wand. And here he is in our closet with my hot pink shoes on. He was so proud of himself for getting them out of box and onto his feet all by himself. Todd was only slightly concerned that maybe it was time for some more time in the "Man Cave" with Daddy.
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