Lest you think that I'm all sunshine and roses, lemme tell you straight up: the past 48 hours have sucked big time. The Neupogen that so blessedly has upped my white blood cell counts brought with it some gnarly side effects.
Here's a little tip: if your doctor tells you that a drug might cause "mild to moderate joint pain" what he's really trying to tell you is that soon you will feel like someone threw you in a burlap sack, took you around the corner, and beat the living bejeezus out of you with a baseball bat. And when he tells you that you can manage the "discomfort" with Aleve or Advil, laugh at him - hard - because he's lying to you.
I spent most of Wednesday sleeping or crying. I was feeling not unlike a science experiment - "now let's see what THIS drug will do..." Although I get the point of all of this intellectually, sometimes it's hard to reconcile how I could feel perfectly fine three weeks ago, with the reality that, thanks to things I've willingly submitted to, I now have the energy, stamina and pain levels of an 80 year-old woman.
It was in the midst of all of this that I woke up from a nap to this photo in my email inbox. It's from my friends Jen Bradwell and Todd Boekelheide who are traveling in Europe. The note with it said:
"We are presently cheering you on from Paris. This evening we strolled through Notre Dame. So one of these candles was lit for you in front of a certain warrior princess... Hope you feel some of her French badassness!"
And I stared to cry (again) but this time it was because from nearly 4,000 miles away, in the midst of this dark, painful and lonely place (extreme physical pain can make you feel that way, no?) here was this light. It felt not unlike this past January, when I found out that all six of my EMILY's List girls were dropping everything and flying in from all over the country to be there for my mom's funeral. And in countless other ways big and small, when I've least expected it, there have overwhelming and humbling acts of love and kindness.
In many ways this has been The Worst Year of My Life. Things like death and cancer have this special way of making the world feel like a more dangerous place. But I can tell you with absolute certainty that I have never, ever felt more loved or more supported.
So add this to the list of Things Cancer Has Taught Me: All of the love and empathy and the good you put out in the world, it comes back to you. Maybe not immediately, and maybe not in the way you want or expect, but it does, and in my experience it comes in exactly the way you need, when you need it most. The universe is funny that way.
I have learned THREE very important things this week:
1. My friend Meghan Metzbower makes a mean veggie lasagna, which tastes even sweeter when it’s hand delivered to your door;
2. My doctor - who is “very serious" - actually has a sense of humor hiding under his white lab coat that comes out when I wear shirts that say things like “Hey Cancer, You Picked the Wrong Bitch”
(thanks Cyn & Eva!)
And most importantly;
3. Apparently my version of "taking it easy" and my immune system's version of “taking it easy” are very different.
When I went in for my chemo treatment yesterday, they checked my blood counts and the white cell count was too low to treat me.
The doctors want the number to be 1,000 or above, and mine was 400.
Thursday it was 1800.
So in the span of four days, it had dropped 1400 points or ccs or whatever unit they measure white blood cells in.
I also learned that I am not bulletproof or superhuman.
(Dammit!! – And I was so sure…)
Apparently that whole “getting kicked in the head by a horse” feeling that I so naively thought I had avoided, is a side effect of this drug called Neupogen
, which is used to stimulate rapid grow of white blood cells.
I didn’t have to get it last time.
I got it yesterday, and...I feel like I got kicked in the head by a horse.
Or at least like the horse is sitting on me.
Either way the horse is not a nice horse and it's definitely not a pony. More like a giant stallion that's used to pull heavy machinery.
This whole immune system snafu feels kinda like those times in high school when my mom told me to do something (or more to the point, NOT to do something) and I did what I wanted to anyway, because my plan sounded more fun -- and then I got caught. Well this weekend was really fun...and my immune system just grounded me.
For like 6 months.
This is a bit tough to take at 35, but I think this is part of the larger lesson I’m supposed to be learning: Just. Slow. Down.
It’s a lesson that the universe has been trying to teach me for years, and one that I've more or less successfully ignored, but this year it seems the gloves are off. I am picturing the cancer like a big, hairy Italian man named Uncle Gino, tapping a lead pipe in his left hand and telling me to rest up “or else.”
Fine. I get it.
It’s a bummer too because there’s this awesome grape stomp/wine festival at the Sugarloaf Mountain winery I wanted to go to on Sunday….Okay, okay fine.
I’ll sit on the couch and watch movies and eat soup. FINE.
I had taken a whole “screw you, cancer” attitude, which makes perfect sense given that it's trying to kill me, but I’m starting to view it more like a slightly overbearing house guest who’s arrived from out of town and wants to crash with me: You can stay for a week and then you have to leave.
And in the meantime, I will appreciate my time with you as much as I can, given that you’re eating all of my food and you snore like a truck driver and you’re sleeping on my couch.
Or to put it another way: you’re in my life for a reason, so let me try and focus on that.
Also, you’ll be gone in a week.
And a week (or six months) in the scheme of my very blessed life is not so
And now for
the good news – the Neupogen is working, my counts are up to 900 and with the second shot I got today, Dr. Fishman says I can get chemo on Friday.
(as my friend Amy said “who thought I’d be HAPPY to hear that you can get chemo?!?”) What can I say? This whole "having cancer thing" is full of surprises.
Today I went in for my bi-weekly blood draw. Here's how this whole chemo things works: Every other Monday, I go in for the actual chemo - 4+ hours of drugs administered via a slow IV drip. On the off weeks I go in to get blood drawn and tested to make sure my red and white blood cell counts are up to snuff.
The ABVD wrecks havoc on the immune system, which means pretty soon mine could be on par with my four-month old niece, except for maybe worse because I can't even be around kids in daycare and she apparently loves it there and even has caught the eye of a three year old named Ryan who is sweet on her, but that's another story. I also can't eat raw, fresh fruits or vegetables (too much risk of bacterial infection) which seems counter intuitive to this whole "healing" thing, but then again so does mainlining poison, so what do I know? The world is topsy turvy.
My armor today is courtesy of the lovely, beautiful Geralyn Pezanoski. I has her partner in crime on the doc film MINE
, and she's starting her newest project any day now - mother to a newborn baby boy. I chose this shirt because this is how I envision my immune system - a fierce girl child with a winged helmet, wielding a smiling hammer of death and riding to victory on a lightening cloud. (She also reminds me of the little girl
from "Adventures in Babysitting" - which is pretty much the best movie ever.)
It's funny because I didn't actually realize my immune system looked like this until I opened the package but once I saw the shirt, I knew immediately.
So far I think it's working, because my red blood cell count was exactly where it was before I started chemo. My white blood cell count didn't fare quite as well, but the nurse didn't seem concerned. I figure I got enough to worry about, so if she's not worried, I'm not worried.
Fight on little warrior girl immune system, fight on!
This week is my "off" week - i.e. the week between treatments when apparently I get a reprieve from the nausea - woo hoo! (it's the little things people) I've been taking advantage of all the energy I have to see people and just be out in the world.
So I was in line at the post office yesterday waiting patiently to send a care package to my little sister when I overheard the elderly man behind me talking to the man behind him. He gestured to a sign advertising breast cancer stamps and said, "they do a great job of marketing and raising awareness. My wife has Alzheimer's. I think they need a stamp." And I immediately and unexpectedly choked up. Granted it might have been PMS, but what it *felt* like was gratitude and compassion all smushed together, because while chemo is no picnic, Alzheimer's is brutal.
The compassion part was easy enough to understand, but I think the reason it really got me was that the gratitude I felt was toward cancer. I felt grateful that being in my own vulnerable place made me more open to receive, in that moment, this little divine reminder that everyone is going through it. Life throws you curve balls. We get sick. We lose jobs. Or people. How many folks do we pass every day on the sidewalk, the subway, at the dry cleaners or the supermarket who might have just gotten the worst news they're gonna get all year? The phone call, the letter, the lab report.
Five minutes later it was my turn. I sent my package, finished up at the window, and as I headed out to the car I found myself a few steps ahead of the man. I had this overwhelming urge to reach out to him, but I hesitated. I was a total stranger to him. He might yell, or get offended or think I was some crazy person. And then I figured, ah screw it. I stopped, turned around said "I'm really sorry to hear about your wife." And right there in the post office parking lot, we talked for 20 minutes about his wife and his kids and Alzheimers and how sometimes life works out different than you expect.
So many of my friends will say "I'm having a hard time, but I don't want to complain to you, you have CANCER." This is true. I do have cancer. But that doesn't make your bad day any less sucky. And I love you so I want to hear about what's going on in your life even if it's that your boss yelled at you, or your shoulder hurts or your car needs a new engine. That's what my post office encounter reminded me - that someone always has it worse than you, and it's still okay to feel sorry for yourself sometimes. But (and trust me on this) take 10 minutes for that and then stop, pick up the phone or the laptop and reach out to someone you love to let them know you're thinking of them. It’s better than chocolate. Or chicken apple sausage.
Some of the hardest things about having cancer have not been what you would expect. Oh sure there was the moment, after the first initial “we’re not sure, but it looks like some kind of lymphoma” half-diagnosis, where I sat on my couch in New York, sobbing and literally saying out loud to whoever was listening, “I don’t want to die. I’m not ready.” But once the first waves of shock faded into an actual malady with an actual name and a 95% cure rate, I started to see this whole cancer thing as just another crazy adventure -- kind of like the time I inadvertently spent the night in a London jail, or when I accidentally freed the goat from the petting zoo -- one of the plot twists in one of the chapters that make up my story.
So the hardest thing so far has not been having cancer, or that chemo sucks and makes me nauseous, or that I’m going to lose my hair, or that I can’t work the same way I had been (that actually might be one of those silver linings I keep talking about.) The hardest thing for me is how much I very desperately miss my mother.
Today is my mom’s 56th birthday. I guess I should have said “would have been,” but there are so many ways she still feels so “here” to me, that I find myself using the present when I talk about her. Yet for all of the ways she feels “here”, there is an equal and identical set of ways that she feels very, very gone.
Like the time, after my PET scan, when I woke up from a nap in a panic, because I realized that I had been home for 6 hours and hadn’t called mom yet to tell her how it went. I literally picked up the phone. And then I realized.
Or when the doctors told me I might want to undergo IVF and freeze my eggs because the chemo might fry my ovaries, but I needed to decide RIGHT NOW. I did what I could to gather info, knowing the whole time that my mom was really the only person I wanted to talk to about this. That she would know just what to say, just what to do.
And every time I catch a glimpse of myself in the mirror and don’t immediately recognize the woman with the sassy, short hair, I can’t help but hear my mom’s voice in my head: “you look darling, like a little French girl,” which is what she used to say to me when I would cry over this very same cut when I was 5 and thought I looked like a boy.
When I first moved 3,000 across country to San Francisco, left my family, gave up my apartment, and was having trouble reconciling this new life with my old identity, my mom - the fierce rabble rousing, picket line walking, adventure traveling video journalist who was now confined to a wheelchair - told me this: “It’s these moments, when you take all of the things that define you – all the labels and descriptions and ideas about yourself – and you throw them to the wind - whatever you’re left with, whatever sticks and stays true in the toughest, loneliest moments, that is the essence of you. The rest is just decoration.”
Thanks mom. I couldn’t do this cancer thing without you.
Today is four days since I started chemo and I have to say, at the risk of jinxing myself down the road, that I feel pretty good. Day 2 was actually the worst with headache, hot flushes and generally crankiness. Yesterday and the day before (the dreaded "day 3") were not nearly as bad as I expected. Granted I have not been my usually perky self, but none of the extreme fatigue (or as my friend Mia who just survived two go 'rounds of fighting Hodgkins put it "feeling like you got kicked in the head by a horse.") So I got that going for me, which is nice.
I have, however been pretty nauseous. The nurse gave me drugs for that, one of which gives me headaches and has been since banished from the kingdom, and another which seems to help a bit. You know those hangovers where you can still taste the 12 rum and cokes from last night and just thinking about them makes you want to wretch violently? Well that's how the chemo hangover feels, except in my case the rum and coke is apparently the last thing I had to eat before the IV started, or specifically a blue cheese and squash sandwich from Pret. Ugh, just thinking about it... ugh. Anyway, it's too bad because squash and I were just starting to become friends after many, many tense years of little or no diplomatic ties. Maybe we'll find peace yet again after this whole bidness is over. Until then, squash, you're dead to me.
Ironically the one thing that *does* taste good is fried eggs and chicken apple sausage. I say ironically because I still (mostly) consider myself a vegetarian and also because these same sausages have become my sister Annie's personal version of squash, after having a bad run-in with them at a Christmas brunch at the Cave about 7 years ago. I at least take solace in the fact the chickens aren't fed antibiotics and are allowed to run free and frolic in the barnyard (actually I've seen chickens and I think the word "frolic" might be a stretch but whatever, you get my point.)
In any case, I'm in good shape, still feeling more or less like a rockstar and very grateful to have such amazing friends. Thanks for all of your awesome posts and to Ross, Deilia and especially Lynn for bringing me treats and keeping me company and to Annie, my dad and the rest of the my amazing family for checking on me non-stop. *mwuah*
Yesterday was my first chemo treatment. For my armor I choose a shirt given to me by my friend Richard, a professional knight turned DP and screenwriter, now doing another stint as a knight. It's all very complicated, but makes perfect sense once you meet him. It's a t-shirt he wore under his for real armor when he jousted. You can see a picture of this and other shirts I've already worn to appointments in the gallery of armor
The photo at left is the first drug - the dreaded Adriamycin (also known as doxorubicin) g
oing in. It's the "A" in the ABVD
, and the one that makes you lose your hair. But as I told it right before the nurse hooked it up to the IV - "nice try buddy, but you can't have my curls because I already cut them and donated them to a little kid and now I look like Joan Jett, which suits my rocker personality much better, so HA."
The first treatment was nothing like I expected -- mostly because I expected to sit and catch up on my summer reading, dantily eating snacks and holding court with all of my lovely chemo visitors while the drugs did their thing. Little did I know that the benadryl they gave me ahead of time to help mitigate the side effects, would make it more like all those drug experiences I never had in college. Seriously I was knocked the f* out from about minute 10, curled up, covered with blankets and completely incoherent, talking about unicorns and other very important stuff.
Needless to say I was not such good company for said chemo visitors, but they were awesome anyway. Thanks to Lynn for agave sweetened ice cream and Jedi princess fleece blankets, Deilia for sneaking out of work, and Annie for bringing me the giraffe figurine and crazy goddess pendant that she was sure mom would want me to have. And thanks to Charlie for manning central command, running interference with the doctor, for yummy Pret lunch (enjoyed pre-pass out) and for shuttling me to and from in Rocinante the wonder Jeep. Today has been a little more rough than I thought - headache, a little dodgy in the tummy and flushed (but no fever as I feared earlier -- good thing as this would mean a bad reaction to the drugs.) They say that day 3 is the worst. Can't wait for that fun!