Three Down, Five to Go: Chemo #3

I had my third AC chemo yesterday, and despite forgetting to bring Apples to Apples, I think we managed to have a good time anyway - thanks Mom, Aunt Melina, Blanca, Marilyn, and Carolyn!

After chemo, Kate D got into town, so we got some desserts (and giant bottles of water for me) and then went to Blanca's house, where we laid around, ordered Thai and Pinkberry for delivery, and loafed around until midnight when I remembered that I just had chemo and should probably go home.

Today I'm getting brunch at noon and then my Neulasta shot at 3:30. The nurse gave me all my blood counts yesterday at chemo, and according to my white blood cells, red blood cells, and whatever else they measure when I come in, before my first chemo, I was at the highest end of the normal range for everything - basically, except for having had cancer, I was super crazy healthy. She ran down the blood tests for before my second chemo, and then the one I did today before my third chemo, and surprisingly, nothing has changed. In fact, my white blood cells have even jumped UP slightly from where they were before my first chemo. So that's the explanation for why I haven't been feeling tired and sick all the time - I'm not!  (Thanks Neulasta, I guess)

So at this point, I really had to ask. I mean, I haven't felt nauseous or thrown up, I eat whatever I want, my blood counts haven't dropped, I'm not tired, I haven't been thrown into chemopause, and despite having shaved my head, I'm getting a little slow growing stubble action going on. The worst side effects I've had have so far been from Neulasta. So, is it working? Am I doing chemo wrong? Am I drinking so much water I'm flushing it out of my body before it can work? The nurse assured me that some people just react to chemo well, and the fact that I was, compared to the majority of people who get chemo, super crazy healthy before coming into it probably really helped. She also noted that while the internet can be a fantastic resource, much of what you find on the internet will deal with people who are having the worst possible side effects, because of course, who else is going to take to the internet to talk about it (except me, I guess?). Fair enough. I'm not counting my chickens before they're hatched, but it really would be great to get through this without feeling really yucky.

Oh, and since I finally remembered -- here's a picture of the pixie cut I rocked for a few days before we shaved my head. (And no, I don't think you're ever getting totally bald pictures!)

Well Put

I stumbled across this article today, written by a journalist who was recently diagnosed with melanoma (check your skin, people). It described so well the experience I've had when telling family and friends about my cancer that I wanted to share it. Think of it as the Hallmark card version one of my awkward thank yous - this time you get to hear it from someone more eloquent.

Despite what a certain kooky Showtime series may lead you to believe, cancer is not all dancing on the furniture and cartwheeling in the halls. Connection is all we have in this world, and you, with your generosity and your spirit, have managed to sync me up to its biggest, most powerful network. To put it in geek terms, I'm on the grid, lit up with everything that's been coming my way. At times it's been overwhelming, your goodness. I've found myself sobbing and laughing at the same time, reading your messages, listening to your voice mails, hanging out with you, astonished at the enormity of your hearts. You've given me the best week of my kickass life. (Sorry, spring break '85.)

The other day my deeply adored friend Walt wrote three simple words. "Whatever you need." So in case you're wondering, that's what you get when you get cancer. You get love from every corner of the world, from friends and strangers. You get people throwing open their doors, extending their hands, showing up at your house with wine. You tap into something so amazing it could break your heart.

If you're interested, you can read the full article, called The Upside to Cancer, on Salon.

And in other news, Chemo #3 on Friday! I believe there's still some floor space available in my chemo room, and another Apples to Apples player is always welcome.

We Knew the Day Would Come

So one of the things they don't tell you about your hair falling out is that it HURTS! Have you ever slept with your hair flopped over the wrong way so it made a weird part, and then you woke up with a sore head? I've been having that feeling all over my entire head for the last two days. So finally, this afternoon, Nathan shaved my head. Well, first he went out and got us gyros, and then we ate gyros, and then we shaved my head. And let me tell you, despite cutting off over a foot of hair and already having lost half of it, there was still a TON left over with which to make a huge mess of the bathroom.

One of the weirdest things I've noticed is that the ends of hair that come out of my head look burnt. Instead of having that little white bulb attached to the end that most hairs that fall out normally have, mine almost like someone took a match to them for a second or two. They're blacker than my hair and kind of fried. I've felt so good (or at least, so not bad) that I sometimes forget what a number chemo really does on your body. At least I know it's working!

It was actually sort of fun to shave my head. We discovered that I have a great shaped head for baldness, and that my head is really cold without hair or a hat. We also discovered that Nathan could definitely have a fallback career as a barber. And it feels SO much better than the constant mild headache I had going on before.

And on that note, I am going to allow my newly smoothed head to hit a pillow, because I'm pretty zonked and Neulasta pain seems to be setting in again (though hopefully this time I can stay ahead of it with mega-doses of Advil).

Take That, Chemo

Today is Nathan's birthday (happy birthday, cake baby!), so we went to Jean-Georges, and it was DELICIOUS. And it has three Michelin Stars, no big deal. It was one of the most delicious (and RICHEST!) lunches I've ever had. And happily, I feel fine. We walked around all day, we had a huge lunch, and now I'm at Steph's, hanging out and watching tv. Today is supposed to be the most nauseous day, so good job hanging in there, body.

And take that, chemo. You're not taking away my summer, you're not messing up my boyfriend's birthday, and you are CERTAINLY not ruining my lunch. Stick to what you're good at - knocking out every single cancer cell that might still be hanging out in my body.

Oh, and for those of you who were wondering what my wig looks like, here's a picture of Nathan and me outside right after lunch.




PS - Aunt Mary and Uncle Lonnie, thanks for the hats! They're perfect and SO comfy!

The Things I Forgot to Mention!

I don't know how I forgot to mention this! I picked up my wig yesterday, and it looks great. I'm going to add a few more layers around the front, but all told, not wiggy, not fake looking, and comfy (which is the most important part!).

Nathan came with me to the wig place, but then had to run to work after a bit. When he left, he asked "So are you going to buzz it today?" And I said probably not, that I wasn't ready to change my hair yet. And he left. My wig guy had to run out front to take care of another customer (since this is a real salon and all). I was alone in the private room in the back, staring at the frizzy hair I'm afraid to blow dry in the mirror and idly pulling out strands, ten to twenty at a time, and letting them fall on the floor. It was probably easier to keep them all on my head because it was curly, since they were all wrapping around one another. It was kind of awesome to see so many come out - like a science experiment. It didn't hurt - they were just like regular loose hairs. As I amassed a small pile on the floor, I started thinking "Wow, are they ALL going to fall out like that? That's going to be such a mess around the apartment. Forget the cat, I'm the real shedder in the house."

Then my wig guy came in. He put a wig cap over my head and tried to fit the wig, but it kept slipping back because I had so much hair, and he laughed when I explained that this is already WAY less hair than I had a month ago. Suddenly, with the option of the wig comfortably available, and no one around, I decided there was really no better time. So I asked Andrew to just chop it off. A pixie cut. The Rihanna. Whatever. Let's do something I would never do in my normal life, since it's gone in a week anyway if I hate it.

So I left the salon with a cross between a regular pixie cut and the Rihanna. I promise I'll post a picture at some point, but it's really hard to take pictures of myself, so, later. I wore it out yesterday and today, and, surprisingly, I have not spontaneously combusted for lack of a ponytail. To be honest, I'd rather have this than my long long hair a mess all the time becuase I'm afraid to pull it out when I style it. Plus, I don't think it will take too long to get back to this length, which I can deal going out in. I think the short haircut gave me something to look forward to. Like, getting my hair back to the length it was sounds impossible. It'll take more years than I can project into the future right now. But two or three inches of hair? I can swing that in a few months!

So I have both very short hair and very long hair (my wig) to wear currently. It's sort of fun to be able to switch it up for a few days. And I promise I'll post some pictures soon!

Two Down, Six to Go: Chemo #2

WOOT. Finished chemo number two today, after over three hours of playing Apples to Apples in the waiting room. (Thanks for the rousing game Mom, Dad, Nathan, Blanca, Steph, and Amanda!) We debated ordering pizza but nixed that when we remembered that probably not everyone in the waiting room has been tolerating chemo the way I have so far and would not exactly be down to see (or smell!) a giant pie on the coffee table.

My second AC was relatively uneventful, except that we played more Apples to Apples that I had a tasty chicken and veggie wrap to eat during it. I got that same really unpleasant chlorine-up-the-nose feeling towards the middle and end of the Cytoxan drip, but it goes away and there's really nothing to do about it. Afterwards, we went to a cafe where I drank my umpteenth bottle of water of the day and got some soup, and then my parents drove us all home. Steph and Amanda came over and we watched tv until I felt tired, and I went to sleep around 7:30 or so. I've woken up a bunch of times, so this is not the passed-out sleep of the dead I slept for 16 hours after my last chemo, but I sort of wish it were, since I'm not feeling so hot anyway.

As per usual in my life, I can't tell if I'm hungry or nauseous. While in normal life, I would resolve this by eating, in cancer life, eating is a little suspect right now. Plus, it's Nathan's birthday tomorrow, and I'm pretty sure "Happy Birthday" is a song better sung without my head in a toilet bowl.

Hair Today, Gone Tomorrow

I'm going back to Andrew, my wig guy, today to have my wig fit, cut, and styled. The timing works out perfectly because I think my hair is going to start going any minute. I saw a sort-of clump come out when I was washing it the other day and thought "Here we go!" and then sobbed on Nathan for a few, but I've started to think that may be more a result of the fact that I've even been avoiding styling it for fear it start shedding, so whenever I do brush it, more hairs come out than usual.

I'm glad it held on this long, because it gave me enough time to freak out about it that part of me can't wait to have it gone by now. One, I want to know what's going to happen instead of thinking about it. And two, since I'm too afraid to blow dry it or brush it, it's REALLY not doing me any favors sitting sitting on my head like a poodle that got caught in the rain. At least the wig will be styled!

Also, chemo tomorrow! Amanda is coming down from Boston to come (THANKS!), so that makes the chemo entourage this week my mom, my dad if he can move work around, Nathan, Steph, Blanca, and Amanda. Friends, you guys are SO good to me. I'm coming up with ways I can potentially repay you. For example, I promise to proofread all your grad school papers forever. Even if you decide to go to grad school for traditional African subsistence beetle farming as part of some eventual beetle-obsessed mid-life crisis. I know, you don't have to say it. You're welcome.

The Worst Idea in History

Honestly, seriously?

I just read an article about a girl in Canada who faked having cancer so people would give her money and attention. She even shaved her head, waxed her eyebrows, and pulled out her eyelashes. I don't care how much money she could get out of it - I don't think I could ever be crazy enough to be bald if I didn't have to be.

I'd rather be me with cancer than not have it and be this chick.

The Elaborate, Lucrative Cancer Lie of Ashley Kirilow

Marshmallow People (Oh, and Post-Chemo Too)

I would lie to you guys and say that I'm writing this at 6:00 in the morning because I'm just extremely vigorous and productive, but you'd know better. I've been having this feeling right before I fall asleep that I am suddenly enormous like the Stay Puft Marshmallow Man from Ghost Busters and I am almost, but not quite, large and puffy enough to take off from my bed and float around the room, and since it's a weird feeling I can't fall asleep. (And you thought this blog would just be about boring old cancer - it's also about becoming a marshmallow person!)

So instead I am updating you fine people on what's been going on here.

I think I'm through the post-chemo slump. Except for wildly messing with my sleep schedule, it really wasn't that bad. I wasn't nauseous or manic or totally debilitated, or at least, not to a degree that a nap and some medicine couldn't handle.

Neulasta shots, on the other hand, can go die in a fire. Neulasta is a shot you get after the kind of chemo I'm doing (dose dense ACT) to send your bone marrow into overdrive and perk up your white blood cell count. Not everyone who gets chemo needs Neulasta, but if you are doing this type of chemo, the schedule doesn't allow time for your body to pick itself back up again between sessions, so you need Neulasta to help you out.

A common side effect of Neulasta is "bone and muscle pain." Yea, cool, whatever. I'm tough, I'm young, I don't have osteoporosis, I go to the gym, this will clearly be nothing I can't handle, right? WRONG. (Again, Neulasta, seriously. DIAF.) From about Monday to Wednesday this week I became a 90 year old woman with osteoporosis. I could barely get out of bed, let alone walk around. My call to the hospital went something like this:

- Did you take Tylenol?
- Yea, didn't work.
- Do you have anything stronger?
- I took Percocet.
- Did it work?
- No.
- Can you take two?
- Did. Didn't work, but eventually I passed out.
- Oh. Hang tough there, tiger. Bye!

My saving grace has surprisingly been plain old Advil, in quantities I will not tell you about specifically, because this is a family friendly blog and I don't want you to think I'm advocating drug abuse.

My oncologist assured me that the first Neulasta shot will be the worst since I don't actually need it very badly yet (i.e. the chemo hasn't eaten a ton of my white blood cells -- I am thinking of Pac Man here, FYI). But once I need it more, it should do its job nicely and not bug me so much.

I might try to go to sleep now, but since I'm seeking to avoid the marshmallow thing, it might be better to just hop in the shower and go to work for a bit.

Shoe Steady and Holding

This morning I didn't feel awful, but I didn't feel awesome. It was partly my fault though because I didn't take the sleeping pill I should have taken, so the steroids kept me awake all night. I was a tiny bit nauseous so I didn't go wig shopping, but Kyra came over for lunch and brought me some chicken tortellini soup, which was miraculously the only thing I wanted since seeing it on Kitchen Nightmares (thanks, Gordon Ramsey).

My chemo nurse called today to let me know that this will probably be the worst day, and that I'll most likely feel much better tomorrow. So, yay!

And it's my sister's birthday today -- HAPPY 20th Sara!

Waiting For the Other Shoe to Drop?

I made it out to dinner last night, felt fine. Woke up this morning, felt fine. Nathan made some scrambled eggs with salmon and toast, ate, felt fine. I know it's cumulative, but I really expected to feel much worse already! Aside from sleeping 12 hours a day, this hasn't been so bad yet.

Though today is also my last day of super-strong anti nausea pills and steroids, so maybe tomorrow is my day to stay in bed all day?

In other news, I need to decide on a wig and do it fast, because I've got like...ten days and counting left with hair.