Sunday, July 31, 2011

of the good

Well, screw that.

I had just written a good amount of words for this post when I realized I was going about it in the worst way possible, so I've scrapped all that for another post.

See, the thing is, I have news. Of the good variety. But I was going on and on about the things leading up to my getting said news, which is just cruel to my readers. So here's the really short version: I was in the hospital for fever, got better, they let me go but did my CT scan first.

Had to wait all of the next day for the results, but when they came, they were very encouraging and with the potential to be very, very good.

No new disease. The nodule in the lung? Gone. And the liver's definitely changed. There's a possibility the tumor may have died, because it seems hypovascular - aka not getting the amount of blood flow tumors normally do. I'll have to do another PET scan to see if the latter is more than wishful thinking. But the answer to is this chemo working? is definitely a yes.

I'd love to report that I am overflowing with unbounded joy, but I'm mostly just relieved. Cautiously happy, but too tired and dazed to process. I barely dared to hope for this result. It's no guarantee for the future, but I'm going to savor this good thing while I can hold onto it.

More updates very soon, promise.

Friday, July 22, 2011


Oh hi Children's Memorial Hospital. You know what just seems cruel? I mean, other than the fact that I am back here once again, this time for platelets. That the day hospital, where I go for infusions, is named after the Chicago White Sox.

Also, I may be a Cubs fan but the next Red Sox fan who tells me the White Sox "are not the Sox" is getting punched in the face. Fair warning.

Many of you have assumed that the need for blood/platelets means that my chemo treatment is getting delayed. Au contraire, friends, I just get the blood and platelets after my dose of chemo. This course ends tomorrow, though, so the end is in sight.

Ever wonder how I got the name for this blog? It's from a Jack's Mannequin song, "There, There Katie" which Andrew McMahon, the band's lead singer, wrote for his sister. McMahon was diagnosed with leukemia at age 22, and his sister Katie provided the stem cells for his transplant. It is a rather sad song to have feature one's name, but it is strikingly appropriate. It always makes me think of my brother, not only because he was the first to send it to me but because at its heart it is a song about the bond between brother and sister in difficult times. The particular line I used goes, "Katie, Katie I'm sorry that in your condition the sunshine's been missing, but Katie, don't believe that it isn't there."

Apparently Barney is still on television. I think he's even creepier than he was in the 90s. And yes, he still sings that freaking song.

However, I'll take Barney any day over the Disney and Nick atrocities the older kids prefer. And trust me, so would you.

I have run out of interesting things to say. Enjoy your weekends, everyone.

Wednesday, July 20, 2011


I find it quite amusing the way Instagram lends a faux-artistic touch to photos of the strangest things. Take, for example:
I was clearly more than a little bored today at day hospital. I'm onto the second half of my topotecan doses, but my hemoglobin had already dropped to 8.8. I hesitated yesterday about coming in from a transfusion, since 8.8 isn't so low, and at that point I was only just beginning to feel the effects of anemia. Good thing I ignored myself and scheduled the transfusion anyway, since when I woke up this morning I was struggling to get ready without losing my breath.

After getting chemo and then three units of blood (see above photo), my dad and I went out for burgers at DMK Burger Bar, since  six and a half hours at the hospital has a way of making a person hungry. The burgers were delicious, of course, but I mention dinner because it was kind of a big deal for another reason. Due to a slight communication mishap (see: story of my family's life), I had neither wig or hat with me, so to get dinner out, I'd have to go bald. And I did.

Here's the thing. It's not an easy thing to say why going bald in public places like restaurants and stores bother me. I'm not insecure about the way I look--frankly, I rather think I pull the look off. After my last bout with cancer, I returned to high school in the fall with a buzz cut's worth of hair and didn't much worry about it.

I think I've figured it out, though. For those unfamiliar with my fair city, Children's is located in Lincoln Park, right across the street from the DePaul campus. The immediate area is saturated with young adults, and it is incredibly busy at all hours of the day and night. Every damn time I drive through to the hospital, or pick up a meal in the surrounding area, I am hammered with reminders of the life I should be having right now. Wearing a wig doesn't eliminate my feelings of alienation, but I am comforted by the knowledge that I look normal enough to those around me. 

Bareheaded, though, I am constantly aware of how different I look from everyone else around me. It as if my lack of hair creates a physical separation between me and the rest of the world, like I'm watching other people live their lives from inside a very lonely fishbowl. And nowhere do I feel that more keenly in places where the "everyone elses" are the people I feel I'm supposed to be.

It's not as though these feelings have simply gone away because today I decided to say "screw it" and eat a burger in public bald-headed. But deciding to do so was me finally refusing to let these feelings change the way I live my life. And for that reason, I'll go ahead and consider this a momentous occasion.

Saturday, July 16, 2011


So many stray and scattered thoughts. It's a struggle to collect enough to put together a coherent post. I really must remember to update before chemo, this attention-span-of-a-gnat thing makes this entirely more difficult than necessary.

My platelets dragged their feet before finally doubling up over last weekend. So I started the topotecan on Tuesday, and received one-hour doses for five days. That would be until today, for those who hate a bit of math on the weekends. I now get two days off. Rinse and repeat, basically.

As for side effects, not so bad. Tiredness, of course. But the only real nausea I had was the first day, and I'm now convinced that was mostly a psychological  response to chemo. It just took my mind a day or so to catch up with my body and realize that I wasn't in fact nauseous. 

There's obviously that attention span problem. For example, I just spent the last 40 minutes getting completely distracted by joining Google+. +1 my blog posts guys, I want to be cool.

Anyhow, the point is the only day that presented any real difficulty was yesterday, but that's because during chemo I got walloped with a migraine. I subsequently spent so much of the day I never left my pajamas. Hate when that happens. I have too many summer clothes and not enough summer days to wear them, I can't just skip out on a cute outfit like that. /shallow

I feel like this is the point where I should talk about how I'm really doing, but that would require more introspection than I'm up for just this second. So let's just say that a) the brain can be a really inconvenient thing sometimes and b) there's been more good than bad.

I've been thinking about sharing a little more often on here, smaller posts like pictures and short updates on things I did, that sort of thing. Like, you know, a proper blog. That'd just be for the people who check in more regularly, and I'd only post the links to heavier, longer entries on Facebook (and Google+, obvs). While my life does feature an awful lot about cancer, it's not entirely cancercancercancer, you know? And I'm thinking it might be nice to share those parts too. Whether you guys are actually interested is another story entirely, but you'll just have to put up with me.