Monday, November 28, 2011

Blogger's Blues


    I want to talk a little about my history of depression, because it’s been on my mind recently. Most (if not all) of you probably had no reason to think of me as person that has a mood disorder. Actually, if you had to guess you’d probably go with “manic”. That’s cool, I know I talk fast. For the first 22 years of my life, I would never have thought of myself as a person with depression either. It’s only in retrospect that I realize this is something that’s affected me all my life (at least since I was 14-ish). At the tail end of college, things sort of came to a head. A lot of people reading this have a medical background, so when I tell you I was having trouble concentrating, feeling guilty and helpless, sleeping all day, losing interest in social activities, losing weight, not going to class… well you probably have a little checklist in your head titled “symptoms of depression” that you’re checking off one-by-one in red pen (too specific? That’s what happens in my head). 
Just go ahead and check all the boxes.
    I wish I’d had that checklist four years ago, but I didn’t. I waited until I didn’t know where else to go, and then I went to student health. Here’s a lesson I would like ANYONE in college to please please take to heart: If you don’t know what to do, go to student health. As it turns out, there are so many people who WANT to help you if they know you need it. I got set up with good support from a psychiatrist and academic counseling to figure out some immediate solutions to my biggest problems.
     Of course, no one gets better overnight. It’s a lot of difficult work to admit that you’re depressed (especially when you’re known for your cheerful attitude), its hard to talk about, and it’s even more work to wrap your mind around the fact that you might actually have to take something for it. Many of you may have personal experience with depression, or maybe you just know someone who does. (None of you fit in neither of those categories, cuz you’re reading this). I don’t know exactly how to describe it, but sometimes it feels like you’re treading water and going nowhere, permanently stuck. Sometimes it’s absolutely hopeless and desperate and you’d do anything in the world to feel differently. Usually its like being at the bottom of a deep, dark hole, and you can’t really find your way out until you figure out how you got in. And it is always, always deeply frustrating.
     The second time in my life that I suffered a major depressive episode it was my own fault (well, the lead-up was). I’d been back in Boston for a while and I was mostly happy and healthy. So I was cured, right? I mean, I’m not like a crazy person that has a problem I just had a rough time for a bit but now I’m totally okay and I don’t need to see anyone or take anything cuz I’m normal just like you and everyone else. See how stupid that sounds now? It seemed completely reasonable in my head at the time. Anyway, combine a lack of support system with spiraling emotional health mix in a life-changing breakup, bake in an oven for two seconds, and you’ve got a recipe for disaster. So how did I get there after everything I learned the first time? And why open up and tell everyone about this now? We’re here for cancer, right? Thanks for asking! Here is your answer.
     My opinion and perspective on depression has weight. It is valuable. This experience with cancer and everything else I’ve had go wrong has taught me that I am strong and willful. I’m not trying to just brag about myself here, but empirically speaking, I have managed to weather this storm well. I think that, up to this point, I always had a lingering doubt that my issues with depression were due to some intrinsic weakness on my part. I was lazy, maybe, or scared to face big problems. We grew up in a culture that values hard work. If you have the right work ethic and put your mind to it, you can do anything. Pull yourself up by your bootstraps, right? NO. Wrong. I am strong, and independent, and willful, and this happened to me anyway. You can be strong, and good, and hard-working, and this might happen to you too. So let’s change the way the world looks at depression, ok? 
I am a warrior.
    At Children’s Hospital we sometimes see patients with osteogenesis imperfecta. This is an incurable genetic bone disorder that causes brittle, easily broken bones. A person cannot will themselves to not have osteogenisis imperfecta. A person cannot fix their own broken bone all by themselves without going to a doctor and expect it to heal properly. A person cannot cure osteogenisis imperfecta after a couple of months of treatment, then expect not to have to deal with it again. Get it? Depression is like OI. Sometimes you break a bone when someone else would have only sprained it, and that’s okay. Sometimes you’ll have to take a pill everyday so that your bones are strong like they’re supposed to be, and that’s okay. Sometimes you’ll need time and professional medical help to heal well, and that’s okay. The point is, it’s not our fault. I didn’t do anything wrong to get depression, any more than I did anything wrong to get cancer. It is just as unfair, but it is also treatable. I’ll go for checkups with my psychiatrist even when I feel well, the same way I’ll need to follow up with my oncologist every few months when I’m in remission. I’ll have to be extra alert to signs of both of these diseases for the rest of my life, but it’s okay because there is so much help available to me on both fronts. I sincerely hope you see it that way too.
    Hey, if you’re still curious click on a link. It can’t hurt. Or go watch Unbreakable, because that’s just a good movie.

Saturday, November 26, 2011

Bleo Update


    Yesterday I did a lung function test again to see if my numbers dropped any further from the 88% on Monday. Guess what? My numbers went UP! I got a 100%! Yay me.
I get a gold star.
    “How is this possible?” you ask. Good question, you. The dangerous side-effect of Bleomycin is pulmonary fibrosis, and the damage is indeed irreversible. However, it seems that it doesn’t take much to throw off a diffusion capacity test (that’s what I had done) and I might have been suffering from a slight cold or something last Monday. This makes sense, since I ended up feeling so crappy later on in the day. My doctor explained that a drop from 109% to 88% really wouldn’t make much sense unless I was secretly a chain smoker who just wouldn’t ‘fess up (I’m not). The 100% that I got on Friday makes much more sense and is more in line with what would be expected.
   So what does this mean? Well, for one thing I will continue getting Bleomycin every Monday. Instead of testing my lungs once every cycle, we’ll do it every week just to keep a close eye on things. And the best news is that if I keep getting Bleo, I won’t have to do a fourth round of chemo! Yaaay! This makes me happy. Lets cross our fingers and hope that I continue getting good scores on my tests.

Thursday, November 24, 2011

Boldly owning my Baldness


    I did it. Took the plunge. Shaved my hair all off. Okay, technically I didn’t do it, but my good friend Pallavi did the honors. She and her boyfriend Neel came over this morning bearing delicious food goodies, and we got the hair cutting party started! It was surprisingly fun. My advice to anyone else that has to shave their hair all off: invite your best friend over, put on some pumped-up dance music, and try as many crazy looks as you can think of on your way to totally bald. I did a true Mohawk, then the Tin-Tin (just a tuft at the front), the GI Jane, and the Skunk. Not to worry, none of these looks will be in my repertoire as I grow my hair back out!!!
     I’ll be honest: I don’t love it. I think it looks weird. I’m not allowed to shave my head in case I get any nicks that might get infected, so this is as close as it gets. I think it looks kind of patchy and odd, and I’m not in love with actually looking like I have cancer all of a sudden. It’ll be better in a few days when my hair is all out and it’s actually bald. On the other hand, maybe people will stop giving me dirty looks on the T when I sit while my mom stands!!!
    We’ll see if I get used to this look over the next few days. I certainly hope so, since I’m going to have to live with it for a while. I’m sure I’ll be wearing a lot of scarves/hats/wigs when I’m out and about, but that doesn’t really change the fact that this is what I look like now, and I want to be able to feel comfortable with myself when I’m just hanging out around the house. For now, it still weirds me out. 
Pallavi's ready for the hair party

BEFORE


Pallavi makes me laugh. I <3 her.

When you can't figure out your razor, it's helpful to have an engineer around. Thanks, Neel!


I wanted to try one.

A REAL mohawk

This is the Tin-Tin!



Touch it!



My GI Jane buzz cut. I am tough.

The Skunk was my idea.

I'm a skunk, see?

So Silly.

So Serious.


Cool shot, Neel!

You know you have a good friend when they shave your head. Trivia fact: PJ also pierced my ears in college.

All Done!!!!

Wednesday, November 23, 2011

Rock the Hawk

      My hair is REALLY starting to fall out now. I don’t notice it anywhere in particular, but I put so much product in it this morning that it’s pretty much glued in place. If I reach back and pinch my hair, I can just pull out a bunch. It’s so weird!!! I will be buzzing it off first thing in the morning tomorrow. On the other hand, I have a LOVE for the fauxhawk look and I wish so much I could do it just a little bit longer. I calculate that my hair is about 3 inches long now, and this would work even if it was shorter, so if my hair starts to grow back in March I’ll be rocking the fauxhawk all through the summer. YEAAAAAH!!!! Here are some pics I’ve taken this morning, I’m sure I’ll be posting tons more on facebook.
   Also, I will be wearing my leather jacket all day even though it is raining because, duh, that’s how I roll now. 





PS. I keep getting the nicest comments from anonymous users! Please please sign your comments, I would love to know who is writing these lovely things! Or you can continue to be my secret admirer and drive me nuts.  

PPS. Here is a bunch of hair I just pulled out of my head. It did not hurt at all, it just comes right out. How weird is that??? No wonder people buzz it off first, this is unnerving. 

Tuesday, November 22, 2011

Even Shorter

   As I mentioned yesterday, my hair has started to fall out. I’m definitely trying to stay ahead of my hair loss, so I decided to go ahead and get a really cool short boy-cut so I won’t notice as many long hairs all over the place. Then, as soon as it starts to fall out in earnest (probably by the end of this week) it will be a lot easier to just buzz it all off! I couldn’t be happier with this cool short hair. I don’t think it’s the most flattering style ever, but it is super cool. Like, my entire outfit immediately looks chicer and more put together just because my hair is so cool. Actually, maybe that’s why I feel it doesn’t fit me. I am not nearly as cool as my hair is right now. If my hair was a person, I would not be cool enough to be invited to it’s parties. That’s how cool it is. 
apparently I make sassy faces when telling my mom how to take photos




Why hello there. I am cool.
PS. You know who else is cool? Tobey VanOrsdell. Not only has this guy been responsible for my last two AMAZING haircuts, but he put this one on the house just to be nice to me. I have been having so much fun with him, he’s going to be the genius behind all my hair decisions as I grow it out. Seriously, Tobey at Liquid Hair Studios. I’ve never loved a hairdresser this much.
This is my inspiration for the faux-hawk I will rawk tomorrow

Monday, November 21, 2011

Day 15


    Yesterday I thought it would be interesting to chronicle my regular Monday schedule for you all. Turns out, this hasn’t been a regular Monday. In fact, it’s been a pretty crappy day. But oh well, I stuck with it (mostly) and took pictures and notes so you guys can come on this sucky ride with me anyway.
    Here is how it works: Chemotherapy days are counted continuously, regardless of whether or not I receive treatment on that day. So today, I am on Day 15 of chemo, even though I’ve only gone in for 7 treatments so far. Make sense? Good. You guys are so smart. Because it’s a Monday, the plan is Bleomycin treatment and a pulmonary function test plus a check-in appointment with my oncologists. This is how it went!
7:00am:  I have to get my blood drawn at 8am in order for the results to be back by the time I start my chemo, so it’s a bit of an earlier wake-up call than I would like. Then again, anything before 11am is earlier than what I would like!
Go Away
7:05am: Getting ready for the day! Today is the first time that I notice my hair starting to fall out. There are so many stray blonde hairs all over the place, I feel like a shedding golden retriever. This doesn’t bother me at the moment, but losing my eyelashes does!!! Doing my makeup leaves me at least 10 lashes down per eye. This is very sad, they are all jumping ship. Only my eyebrows remain loyal, you stalwart friends. I promise never to forget to groom you again.
7:20am: Delicious and nutritious breakfast. I have the extreme luxury of having my mom around to make food while I get ready. Eggs are delicious, but they have to be very overcooked just to make sure no stray runniness gets in there. All my regular bread has been replaced by Ezekiel bread by my sister’s orders, and it is quite filling and delicious.
7:30am: Off to Beth Israel. I live close enough to walk, and for now am feeling well enough to get there and back every day. It’s nice, because at this hour you get to see all the happy Brookline kiddos walking to school with their moms. Adorable.
8:15am: Blood draw at the outpatient oncology clinic. They’re not cool enough to draw blood and put in an IV at the same time (I’m starting to realize Children’s is the only place kind enough to offer this lovely service) so I get stuck in my hand, first needle of the day.




8:20am: Coffee break! How is this possible on my new caffeine-dairy-sugar-free diet? Well decaf coffee will have to do the trick, with plenty of soy milk and some artificial sweetener. I swear, I can’t wait for a caffeinated whole milk latte at the end of this.

8:45am: Pulmonary Function Tests. I had baseline levels done a month ago before I started treatment, so today’s test measures how much the Bleomycin has affected gas-exchange in my lungs. It didn’t go well L Last month I was at 109% of the expected levels, and today I was at a measly 88%. That’s a big drop, too big. I know it’s not in my control, but I’m disappointed somehow, like if I had studied harder I could have done better on this exam. Unlike my blood counts or hair, the damage to my lungs is a permanent irreversible side effect, so it can’t be allowed to drop much further than this.

No comment

9:45am: Appointment with my doctors. The good news is that my blood counts are all still in really good range, so I shouldn’t be too impacted immunologically yet and my platelets look awesome. The bad news is the results of my pulmonary function tests. We’ll finish this round of Bleomycin today and re-test my lungs on Friday to see if my numbers continue to drop. If they do (which is likely) I’ll have to stop taking Bleomycin. To compensate, I’ll have one whole other cycle of Etoposide and Cysplatin treatment added. This isn’t great news. Yes, of course I want to retain good lung function (I need that, right?) but it sucks to have to do an extra 3 weeks of chemo.
10:30am: Start chemotherapy. One more stick for an IV, and I get started on fluids and maybe my last round of Bleomycin. Luckily, it runs pretty quickly and I get to read my awesome book while I wait.
ouch

I have amazing nurses, truly

Am I done yet?

Mindy Kaling is hilarious. I never want her book to end.
12:15pm: On my way home already! I am in good spirits but definitely ready to get my nap on. Four and a half hours of activity is pretty much my limit before I need to take a break, so that’s great. Totally looking forward to the rest of the day.
zzZZ
2:00pm: Oh no. It is unfair to be woken up from a solid sleep with body aches and chills. I pile myself under every blanket I own, but cannot feel any better. Seriously, I felt miserable. So I took my temperature and it was 101. Boo, hiss!!! IV meds + fever + chills = trip BACK to the hospital. 


3:00pm: At the BI clinic again. This time I get freshly stuck to get blood cultures, and also do a urine sample (no needle for that). While waiting to see if I can go home, I get really sick and throw up in the waiting room. You know what’s gross? Throwing up in front of total strangers just waiting to see their doctor. Nice. I did not get a photo.
3:15pm: Back in a chair, getting IV fluid to hydrate me and some more meds to get me to stop vomiting. That’s my fourth stick of the day, and I am just DONE with it. Still freezing. Luckily it seems that my fever and general grossness is either a side effect of the chemo or a mild viral infection, but since my blood counts are good I can spend the night at home as soon as I feel better. I’ve been in the hospital enough to know that my bed > hospital bed, so yay.

6:00pm: Home again. You know that feeling when you’ve thrown up everything you ate all day, and then as soon as the nausea breaks you’re just super duper hungry? Yea, that’s me. Fortunately I’m starting small. Still, all you people that think breakfast in bed is fancy, check this out: dinner in bed. That’s the ticket!
So that’s been my day so far. Now I’m resting and writing this and counting down the seconds until I can take another advil again because everything from the top of my head to my toes is either pounding, sore, or stiff. I’d say I predict I’ll have a pretty chill evening and hopefully sleep very well… but who knows where the rest of this crazy day will take me.