Don't be a Stranger

    My second looong week of chemo is over, hooray! The effects of chemo are always a bit delayed, so I’m feeling much worse this weekend than I was during the week (jumping around like a non-sickly person on Friday probably didn’t help). Chemo brain is in full force, and lots of sleeping and cuddling under the blankets means that I’m in a mental fog, so forgive me if this is kind of rambly.

    First of all, I am SO SO happy that I got to get out of the house and stop by the Children’s Hospital party on Friday. It took me about 20 outfit changes to find clothes that somewhat fit, but as it turns out I could have gone in sweats and still had a fantastic time seeing people that I really missed. This was a pretty tough week at chemo, and having a couple of hours to feel somewhat normal again and socialize was really wonderful. I might have over-exhausted myself just a little, but I think it was completely worth it. 

The only photo taken!

    In talking to people that I haven’t seen in a while, I noticed that it might be kind of confusing for friends to figure out how to best support me during this difficult time. A lot of people mentioned wanting to give me “space”, which is very thoughtful, and I think many people just don’t know what to say or how to say it. So how about I make it easy for everyone and just tell you what’s helpful, yea?

Here are things I love:

1. Emails or facebook messages. I’m missing out on so much that’s going on at work and in your lives, so please feel free to write and tell me how you are and how your day went. What’s the latest gossip? Any fun winter plans? Maybe I’ll be having a bad day and I won’t be able to respond, but it always makes me happy to hear from my friends. An empty inbox is a sad inbox.

2. Cards/packages. I am keeping a collection of all the get-well cards that I’ve been receiving. They go up on my wall right across from my bed and it is so encouraging to look at them when I’m down. I guarantee that if you drop me a card in the mail it will make my day. There’s nothing better than receiving NON-medical-bill-related envelopes!

3. Follow my blog, friend me on facebook. I don’t think it’s lame that we haven’t talked for five years and now you’re back in my life again, I think that’s AWESOME!!! One of the best and most unexpected things to come out of this mess is the opportunity to reconnect with old friends. It’s really touching, actually, when someone completely unexpected shows support. 

Things that are not-quite as helpful:

1. Phone calls. I am so in-and-out of doctors appointments and hospital visits and naps and everything that it’s very hard to catch me at a good time to talk on the phone, and frankly it can be a bit draining. Most of my phone calls are medical-related or from CVS regarding a prescription, and that is okay with me.

2. Sending food. Up until last week, this was amazing and delicious! Unfortunately, now I have to be very careful with what I eat and how it is prepared, so food gifts and restaurant outings are complicated. 

   I hope that makes things easier for all of you guys. What I’ve really learned from being sick is that when in doubt, any contact is helpful. I know it’s the thought that counts, but if that thought can be written down and conveyed somehow... well, that counts even more!  I have such a varied and lovely and wonderful support group of friends and family, I cannot possibly thank you all enough in this post or any other. Now please excuse me for my pre-supper nap.

Big n' Toasty

   Today is one of those days when I’m not feeling so great, physically or mentally. In general, my chemo weeks seem to start out okay, but as the week wears on the effects add up and I get a little more run down. I think what’s getting to me most at the moment are the visible physical effects that all these drugs are having on my body. Today alone I’ve swallowed or ingested eight different drugs, and that doesn’t even include the weekly ones that have long lasting effects. So what exactly am I dealing with? Let’s break it down.

1. Hair loss. Okay, I know this one is a given. We all knew it was going to happen, and I was as prepared as could be. I might start to feel differently when my hair has completely fallen out and it no longer looks like I caught mange, but for now I am NOT happy with the patchy, stubbly conditions on my head. Even when I don’t feel sick, I look sick, and it’s just a constant reminder that I actually have cancer. No fun.

so patchy and sickly looking!

2. Fluid retention. One of the drugs that I get for chemo, cysplatin, can do quite a number on your kidneys. To protect my kidneys from any damage, I get A LOT of fluid during my chemo weeks. There’s at least 2 liters going in during the morning, and I drink another 1.5 throughout the rest of the day. Combine that with steroid treatment, and I blow up like a balloon. For example, on Tuesday morning I weighed in at 129lbs. This morning I weighed 137lb. All that water is just hanging out, making my face puffy and my fingers fat and generally making me feel inflated and uncomfortable all over the place. And another thing about that damn scale…

3. Weight gain. I guess this can be attributed to multiple factors. The fact that I’m going through menopause, taking steroids, and occasionally eating quite a lot means that I am putting on more than just water weight. This wouldn’t normally bother me that much since I’m used to my weight fluctuating a bit, but the wacky hormones mean that I am putting on weight in places I’ve never gained weight before. Sure my butt is bigger, but I’m also much thicker all around my midsection and hold on... what is UP with back fat??? I’m actually going to have to buy larger sweatpants. Heck, I’m going to have to buy larger underwear. I’ll spare you any gross photos of what I look like trying to fit into my normal pants, but here’s a hint.

4. Hot flashes. Speaking of those sneaky menopausal hormones, it seems they like to toy with my internal thermostat as well. I was actually quite curious about hot flashes, are they really as horrible as middle-aged ladies like to make them out to be? Well, yes, yes they are. Individual hot flashes aren’t that bad, it just feels like the room warmed up suddenly and now you’re all sweaty. Try getting some sleep or relaxing when the temperature changes radically every 20 minutes, and you’ll see why it can start to get on your nerves.

    So to recap: I’m bald, bloated, fat, and sweaty. I don’t feel like myself and I don’t look like myself, and that’s getting me down.

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.

http://www.nimh.nih.gov/health/topics/depression/index.shtml

http://www.nimh.nih.gov/health/topics/getting-help-locate-services/index.shtml

 http://www.bidmc.org/psychiatry.asp

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.

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!!!!

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. 

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

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.