Trivia

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.

Bald

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.

flyaways

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.

Block.

The writer's kind, that is. I have started this post roughly 10 times, and while I have plenty I wanted to say I can't seem to put it into words. So I'll drop those things for now so that I can provide some sort of update.

Friday I spent an entire lovely day at the hospital, getting blood and platelets. My hemoglobin and platelet count both dropped off rather dramatically between blood draws on Monday and Thursday. My white counts are also continuing their stay in the basement. Which, unfortunately and to my great frustration, means I have to delay the chemo I was scheduled to start on Monday.

I hate sitting around waiting for the next round. Not only is it frustrating to have to wait on treatment, but I also now have even more time until I find out if these new drugs are even working. And every week of recovery adds to the length of this ordeal. At this rate I'll be in treatment until 2013. The one upside is that I usually feel pretty decent during these extra weeks, so I can log some "feeling halfway like a normal person" hours. As I like to call them.

There's a not-so-small problem with feeling better, however, which is namely that it tends to make me feel like shit. Sure, physically, I feel great: I can eat, I have energy, I get out of the house. Emotionally, mentally, I'm a wreck. See, when I'm getting chemo or dealing with the side effects, 95% of my mental energies are directed to coping with pain and illness. It's actually so mentally draining I find it difficult to read books, which for me, is pretty remarkable. I sleep for 10 or more hours, and I pass out easily by 9pm.

When I'm better, on the other hand, my mind's free and clear, and there's no good or healthy way to just stop thinking. So think I do, about all the things I'd really rather not. It's not as bad as it was a few weeks ago. I'm  no longer stuck in a spiral of thoughts of the worst that could happen, and I don't cry every single time I'm alone. Sure, thoughts of "What if I don't make it?" still sneak up on me, leaving me feeling as if I've been punched in the gut. But I'm getting better at chasing those thoughts away.

It's other thoughts which haunt me more now, thoughts of past and future. For "What if I don't make it?" isn't the worst question, it's "What if I don't get to do that?" What terrifies me is that I might lose my future, and I don't think I need to explain why that fear makes me question my past. Decisions I've made and convictions I've held, all of which I was so damn sure were right at the time, seem stupid or deeply misguided. It's the regrets from the years I've had and the possibilities from the ones I've yet to that plague me on these days when I'm feeling well, bringing tears to my eyes at random moments and keeping me up at night.

It's not easy to chase these thoughts away. But I devour books, sometimes several in one day, pulling anything that looks tolerable off the library shelves, since reading offers the best respite. I jump at any chance to leave the house, to do something, anything other than sitting alone with nothing to do. Lying in my bed at night, I try to pray instead of letting my mind dwell in grim places. And I wait, because I trust that this will all get better with time.

It's not easy, but it's all I can do.

Everything different

Turn up the lights in here baby, extra bright I want y'all to see this.  Turn up the lights in here baby, you know what I need, want you to see everything, want you to see all of the lights.


It shouldn't be, I suppose. Different, that is.

But it is. I almost wrote that I've been lying to myself, but that's not quite true, and not fair. After all, it was easy for me to ignore that I was facing an approximately 40% chance of failure, much, much higher odds of failure than I have ever dealt with in my life. After all, I could check a box for all the positive prognosticators: I had the mildest previous treatment possible, no radiation, it was a long time between remission and relapse. And things were working: my tumor shrunk, surgery removed it, just another few cycles and I would have minimal disease and I could get stem cell treatment with its high rates of success. This would suck beyond telling, but at the end, I'd be fine.

Then, a CT two weeks ago, meant to clear me for stem cell, showed that the disease in my liver had grown, and worse, spread to the lung. A PET scan a week later confirmed. Chemo hasn't done a damn thing to check the disease's growth since surgery.

So no stem cell transplant for now (they know it won't work with that much residual disease), and onto another chemo regimen.

And, oh yeah, the chances of my dying from this disease? Now greater than half. How much greater, exactly, I'm far too scared to ask. All my doctor offered was that this "didn't put [me] in any immediate danger," a less-comforting-than-it-was-probably-meant-to-be statement which doesn't incline one to ask further questions. But it's not the statistics that have me so rattled. It's the roadblock, the setback, the change of course. I've been spent hundreds of hours pouring over the charts of pediatric cancer survivors, and I struggle to recall more than a few cases where those survivors had their current treatment stop working. Survivors' treatment goes smoothly, like mine did the first time around.

I've never hated my knowledge--and my need for more of it--until now. My dad today told me he had looked up the use of these new drugs in Wilms, and my response was just a look and a "Why?" because he knew I had done the exact same thing and not exactly coped well with what I found. It's impossible to not get rattled by any Wilms relapse study, because they all repeat those charming survival statistics to stress the point that more research--their research--is needed. What gets to me most, though, is the use of the word "salvage" to describe chemotherapy regimens used after the first has failed. Not to out myself as an English major or anything, but the connotations of "salvage" don't exactly warm the heart. It's not a particularly hopeful word, one that seems to imply we're just trying to save pieces from a wreck.

And God how much I wish that doesn't turn out to be true. Every damn cell in my body is hoping, pleading that the treatment I received this week works, that I can move onto stem cell, that I get to grow up for real and be a doctor and have a family and travel the world and eat at the famous restaurants I can't afford right now and just fucking live.

Yet for the first time I find myself forced to confront the very real possibility that I might not. And everything is so very, very different. I'm not quite sure it will ever be the same again.