Archive | October, 2010

Restored Appetite

27 Oct

The Ball Game

Thanks for the birthday wishes everyone! Twenty-five and staying alive. No, really, I spent my birthday actually working towards that goal by getting chemo. My appointment was a pretty uneventful three hours. My Dad drove me to the doctor’s and for breakfast, I ate most of the birthday chocolates he brought me. We sped a bit on 95 to get to my appointment because, well, number one we were a little late and number two, what, are we going to get a ticket? We just tell the officer I have cancer, right? It wasn’t an all bad birthday. I chatted with some interesting people at chemo, hung out with my dad, and Chris drove 50 minutes round trip to get me the good Indian food take-out for dinner. He even stopped on the way home to pick up salt & vinegar potato chips.

In non-cancer news I am digging the World Series. I understand that baseball, as a sport, is “standing up to cancer”, and that’s nice, but it’s not why I’m enjoying the game. I feel nothing for the Giants or the Rangers, so I’m just kicking back and savoring some unencumbered baseball. Thomas Boswell once wrote that “There are oceans of satisfaction, seas of restored appetite, in as a humble a thing as a baseball season.” I have to agree. I was enjoying the smoldering close-ups of pre-pitch Cliff Lee and some of those pitches he threw were just beautiful. A short while later I enjoyed watching the Giants start lighting him up. And Buster Posey? Best baseball name of the year? The Lincecum wunderkind is a joy to behold. I googled Cliff Lee and apparently a lot of people think he looks like Hugh Laurie…thoughts?

I have to admit I don’t know a TON about baseball. I can keep up in a conversation. Usually. If the other participants are patient and forgiving and have had a few beers. I know that I like to watch pitchers bat even though I’m an American League kinda girl. I know that even though I’m not a Yankee fan, watching Nick Swisher pitch against Tampa Bay in 2009 was one of my favorite baseball moments. That and Jacoby Ellsbury stealing home. I like Jonathan Papelbon. And Kevin Youkilis. I will miss Mike Lowell. Bull Durham is one of my favorite movies. Oh and Roy Halladay throw that post-season no-hitter a few weeks ago was pretty thrilling. I decided to interpret it as a good omen.

What I lack in knowledge, I make up for in commentary about the crowd, observations about how the butts and thighs of various players look in their uniforms and adherence to weird baseball superstitions I picked up from my dad (if your team is winning, you can’t change the channel, but if they are losing, you must scroll through the channels in order). I know the game well enough, but the bottom line is that I believe in baseball. I relish baseball. I love ball parks and the faces baseball players make and the fact that I can read while watching a game. I know major league baseball has gotten all out of control with the monies and advertisements and egos and ‘roids and sushi at yankee stadium…but I still love the game. I’m really looking forward to getting back up to Vermont and getting into a Lake Monsters game for free with my hospital ID, bringing a book, getting a beer and watching the sun go down over the lake during a game.

I leave you with another of my favorite baseball moments. The pizza throw heard ‘round the world.

Piqued

22 Oct

The first day of chemo went well, pretty uneventful. I was nervous and worried about all the chemo dramz I’d been warned about, but really, I just sat there for 5 or so hours while baggies of medicine flowed in to me. I got steroids, benadryl, two anti-nausea medications, taxol and carboplatin.

The benadryl was the strangest part. I’m sure that benadryl is important in ways that martinis aren’t, but as far as I could tell, they just dumped martini in my IV. Up. With a twist. I think the fact that I got benadryl immediately after a mad dose of steroid probably didn’t help, but I felt progressively more and more drunk as the giant bag of benadryl got pumped into me.

By the end of the bag I must have been in visible distress because my mom was giving me this strange look and then said, “Col, are you ok? You like a little piqued.”

I was, well, drunk and said back, “Piqued? What does that mean piqued? What do you mean piqued?” I know perfectly well what piqued means, I think I was just making conversation. And I use the word “said” loosely. I think I was red in the face, bug eyed and leering at my mom when I semi-shouted that. It was a bit of a “David After Dentist” moment. Which if you haven’t seen…

Thankfully this feeling passed.

I do love my chemo nurse. I will call her Fluffers. I will call her this because that, apparently, is what one of the doctors calls her because of her tri-color spiked up punk haircut. I don’t know, that name might not stick. It’s sort of weird. I hope the doctor that calls her that is unaware of the potential pornographic implications of a nickname like “Fluffers”.

I wasn’t sure that she and I were going to get along. The night before chemo she called to check in, which was very nice, and asked if I could come in a bit earlier the next morning. I explained that this was no problem because I was staying in a hotel close by. To this she said “Well aren’t you a fancypants” which I had no idea how to respond to.

“Yes, I am a fancypants, thank-you-very-much”

“Oh, no, I’m not a fancypants, it’s just the Ramada in Seekonk. I even puked there last week!”

Or I could just do what I did, mumble something awkward along the lines of “Oh, haha, yeah, right, I guess, thanks, haha”

Turns out she’s a great nurse, just six months older than I am, and we share a love of zebra-striped Dansko clogs. Also, her aunt is getting a “chemo-sabe” tattoo over her scar from her port. While it is disappointing someone else thought of the clever “chemo-sabe” it did seal our friendship. When I asked her if I could get a tattoo during chemo she said “Absolutely not, but I can” and then told me about the violin tattoo she is planning. I like her. She gave me a glow-stick bracelet, obviously the true cure for cancer.

Back home now, feeling pretty good for the day after chemo. They tell me my hair will start falling out in 10-14 days. I’ve been hat shopping for an hour already this morning. I don’t know about these wigs though. A lady from the American Cancer Society visited me yesterday and gave me a magazine of wigs. We’ll see. I’m suspicious.

Next week is my 25th birthday, which I will be celebrating with a taxol cocktail at the doctor’s office. Maybe they’ll give me more benadryl.

Chemo-sabe

19 Oct

I didn’t get to start chemo this past Thursday, but nonetheless, it was an eventful day. Dr. Great had some more great (obvi) news. My tumor is apparently a weird blend of a less aggressive type cancer and something known as borderline ovarian cancer. This is good. I met a bunch of people who will be joining team Colleen and we checked in with my leaky hematoma and made a plan for chemo. I’ve chosen to be part of a study through the National Cancer Institute. I’ll be receiving the standard treatment for ovarian cancer, a combination of taxol and carboplatin as well as a drug called avastin. I wouldn’t have access to this avastin drug unless I enrolled in this study. Don’t everybody panic though – this is not an EXPERIMENT or something, nobody is EXPERIMENTING with my cancer. Avastin is used in lots of different types of cancer, including recurrent ovarian cancer, it’s just not part of the standard ovarian cancer protocol yet.

I’ll be starting my chemo this coming week. They’re going to put a port in my chest so the veins in my arms won’t get all scarred up from the toxic drugs they’re going to dump into my body. My chest X-rays will look kind of like this from now on:

My X-rays will look like that, unless there’s something bad happening in that picture. Is there something bad happening in that picture? I didn’t get to imaging in med school yet.

My hair is going to fall out, but it will grow back. As soon as it starts to fall out, I’m just going to shave my head because I think have weird clumps of hair sprouting irregularly out of my head will be worse than just being bald. I think the strangest part will be my lack of eyebrows.

I also had a CT scan this past Thursday, to get a pre-chemo baseline of what my insides look like. I drank two canisters of this goo, berry AND banana flavored.

nice action shot, right?

My CT scan looked nice and clean, but this barium sulfate smoothie did not make me feel so good. After we left the hospital, we headed out to pick up some take out and crash at a hotel. The car ride did not improve the mood of the marching band in my belly. We finally arrived at the luxurious Ramada Inn in Seekonk, MA. My mom went inside to check in, and I was all like “No, no, I’m good, I think I’ll just walk around a bit, get some air.” Let’s keep in mind I’m wearing sweatpants and clogs and some kind ratty homeless sweater, and I’m shuffling like Ozzy Osbourne (because that’s how I walk after major surgery) in front of the Ramada which is scenically located along some rush hour crazy busy interstate.

And then, I know it, I’m going to puke. I can’t run, because, well, have you ever seen Ozzy Osbourne run? No. I’ll never make it to a bathroom, so I shuffle to this grassy patch in front of the Ramada and projectile vomit CT scan dye ALL over the place. Three times. I should have waved to the commuters.

You can laugh, it’s pretty funny. I laughed and then ate three mozzarella sticks for dinner and then passed out watching Law & Order.

Zebra Mom Says:

12 Oct

Blog from zebra Mama:

This period of waiting for pathology results feels at times completely freeing and at others completely intolerable.

Freeing? Because we can enjoy the knowledge that our lives have completely turned upside down and that our priorities of two weeks ago no longer have to be our priorities today. We can put aside obligations and tend only to ourselves, the whole while with no idea of what really awaits.  We are shifting around, changing plans, ruminating about what might need to happen, and mostly laughing and reassuring each other that we will be okay during and after the next round of scary medical intervention.

Intolerable? Because, the anticipation of the upcoming struggle haunts me.   Looking forward to challenges has always been worse for me than their reality. Now we are at liberty, to think the worst as well as the best.  As during the hours, sometimes days, preceding an important court appearance during my lawyering days, or more recently a presentation at a conference I anxiously obsess. Sitting on my calendar, these things make me very nervous, anticipated almost to the point of dread.  But, once it exists in my present tense, the actual event is not difficult. My efforts look effortless to others. My rationale mind takes over, knows that things will go fine, better than fine, and once it is all over it will have been great fun, and in some way an incredible experience. Action for me is the more comfortable place.

The next few days will be very long.

Franken-belly

12 Oct

So, first of all, thanks to everyone who said something nice to me. To everyone who left a comment, or sent me a message on facebook or texted me or visited, thanks. It matters. When I read your comment or message or whatever, I didn’t think about cancer for a minute and I enjoyed that.

Like my Mom said in her post, we are now just waiting for my pathology report to come back. Apparently the fact that it is taking longer than normal to come back is a good thing. My cancer cells still look like ovary cells. They’re still pretty differentiated and haven’t morphed into rogue, creepy anonymous cancer cells that can spread to all corners of my body. This is a good thing.

I did get to take an exciting trip to the emergency room over the weekend thanks to some unexpected bleeding. I spent four hours there with my mom, hanging out with the toddlers with head wounds and stuff. Everything turned out alright, we think I have a leaky hematoma – super cute. I hadn’t been to the ER in a really long time. Not since I got in a silly and pouty fight with Chris in Massachusetts a few years ago. It was maybe 1 AM and I tried to grab my bag out of his car and walk off in a huff, but instead I walked over a patch of black ice (I like to think it was black ice at least, it makes me sound less clutzy). I took a classic banana peel spill and tried to break my fall with my hands, spraining my wrist something awful. Chris drove me to the ER.

As promised, a picture of my incision. I was going to try to figure out how to hide this behind a link so that people didn’t have to look at it if they didn’t want to, but I’m not wordpress savvy enough and am not motivated to become wordpress savvy right now. I also show my incision to everyone I can because I think it’s pretty cool. I say “I can show you if you want” and then show it without waiting for a reply.

This was taken about 5 days after my surgery. On the right, you can see my lint collecting estrogen patch and on the left, the little red marks where the nurses gave me shots of blood thinner. On the inside, the incision goes up a couple of inches farther, skin is stretchy so they don’t have to cut it as much. The incision goes down a little farther too, but I’m not putting pubes on this blog. I’d like to tell you it looks better now, but it sort of just looks the same. I will have a pretty excellent scar I think, one I can boast proudly about. Check back later, Chris is trying to photoshop this photo to make it look like a proper Franken-belly, you know green with bolts sticking out the sides and stuff.

A Zebra is Born

7 Oct

“In medicine, when you hear hoofbeats behind you, don’t expect to see zebras.”

It’s a lesson in diagnostics taught in medical school; when your patient presents with a certain set of symptoms, don’t reach for the exotic diagnosis, the zebra.  A zebra can be a rare disease or a disease that is rare in certain people or places.  The rash your patient has is poison ivy, not flesh eating bacteria.  The patient with blood in their urine probably has a UTI, not paroxysmal nocturnal hemoglobinuria. The 24 year old with cramps, urine frequency and bloating probably has a cyst, not ovarian cancer.  But, just because zebras are rare, doesn’t mean they don’t exist. 

I’m a zebra.  I’m 24 and last week I was diagnosed with ovarian cancer.  In retrospect, I probably had all the symptoms.  I had more cramps than normal – but I’d stopped hormonal birth control and my periods were more intense than before.  I sometimes felt bloated – but who doesn’t?  Maybe I had to urinate more frequently – but not outstandingly so.  I had a routine annual exam and my doctor thought that I felt “a little uneven” in my pelvic region. She ordered an ultrasound and reassured me that is was nothing to fret about, probably just a fibroid cyst.  I had an ultrasound that week and the lump didn’t look like a fibroid.  I was on vacation, at the beach, and it was probably just some other type of cyst.  My doctor ordered a CAT scan to confirm.  I think I even said to my mom “It’s not like it’s cancer or something.”

A month later, I had begun medical school and didn’t get around to having a CAT scan until the end of September.    The next day I had my first day of Gross Anatomy lab.  I spent hours meeting my cadaver and beginning my dissection.  When I got out of lab, I’d missed a ton of calls and even a text message from my doctor.  I called her back at the bus stop.  She started telling my about my CAT scan results.  Ovarian mass…blah blah blah…size of a softball….blah blah…lymph nodes in there…blah blah… bright spot on your liver…blah blah blah.  I stopped her there.

 “You said lymph nodes and liver.  Are we talking about cancer?”

“I hate to do this over the phone, but yes, that is what we are talking about.”

I couldn’t breathe.  Waiting for the bus.  In the rain.  I couldn’t breathe.

My Doctor gave me Dr. Great’s number, his personal cell, so that I could talk to him about what the next move was. 

My bus arrived.  I got on it.  And because I was about to lose it and couldn’t blab on the bus about my ovarian cancer, I texted Chris.  Who, even in text, is the only reason I didn’t lose my shit completely on the bus.  The people around probably thought I’d just been through a bad break-up or something.  I had that oh-woe-is-me-on-the-public-bus look.  I’ll never judge mopey, oblivious, texting people on the bus again.  They probably just found out they have cancer.

I called Dr. Great, who I liked immediately. He told me about himself, let me cry, comforted me and told me to come in to his office the next morning anytime after nine.  He offered to call my mom for me.  He told me to call him anytime, he loves midnight conversations.

So, I packed crazy, useless stuff into a small bag and got in my car and drove to Chris.  I listened to a Michael Chabon audiobook Chris had bought me and tried not to think about how I was going to die next week and never have kids and be fat for the rest of my life because there’d be no time to lose weight now!  

I made it to Chris.  We didn’t sleep very well.  The next morning, I met my Dr. Great.  We did all kinds of exams, bloodwork, counseling and planning.  They said it could be cancer or it might be something else weird.  I was scheduled for surgery on Thursday morning to take out this mass and figure out exactly what was going on.  I met with the Reproductive Endocrinologists that day to talk about freezing my ovaries and eggs and maybe even making little baby-sicles with Chris’s sperm for later. 

Wednesday, I met with the anesthesiologists and did bowel prep for surgery, one of the most disgusting and weird experiences of my life.  I took an ungodly amount of laxatives mixed with blue Gatorade and spent the afternoon in a Residence Inn, watching NCIS, and eventually experiencing what they call “clear stool”.  Yes, clear, like peeing out your butt.

We, my mom, stepdad, sister and Chris, were at the hospital at 6 the next morning.  I checked in, met my surgical team, signed some papers and got some sedative.  The last thing I remember was being moved onto the surgical table.  I thought “Wow, they really have those big lights like on TV.”  They put my arms straight out on either side of me.  I must have look dubious about this arrangement because my anesthesiologist said “Don’t worry, nobody is getting crucified today.”  And then I went to sleep.

I woke up in sheet clutching agony 2.5 hours later.  They gave me morphine and asked me stupid questions.  I asked them if it was cancer, no one could tell me.  They wheeled me up to my room, moved me into my bed and handed me my morphine pump.  No one could tell me if it was cancer, they didn’t know.  My family came in, I asked if it was cancer, my mom said that yes, it was cancer.  I said “Ok.”

The only other thing I really remember well from that day is asking the nurse for a mirror so that I could look at my incision.  It’s a nine-inch incision from my bellybutton down.  There was no gauze or dressing because these days they just sew you up on the inside and then put this super-glue/nail-polish type stuff on the outside.  I call it Franken-belly because it is my bloated, misshapen sewn up little buddy.

I’m home now, after an eventful hospital stay, full of Law & Order, morphine, gas pain and shower struggles, a blood transfusion, a fever scare, a chest X-ray and a visit from friends who made me laugh so hard I literally thought I was going to bust my gut open.  Some doctors were great, some made me cry.  I loved all the flowers and good wishes I got – even if I didn’t respond, it meant so much to me to hear from everyone, to know they were thinking about me.  And I can’t say enough about my family, my amazing, loving, funny, drop everything when you need us family.  And that includes Chris.  Dr. Great came to see me, even on a Saturday, and always had wonderful things to say, reminding me that we’re measuring my life in 50, 60 70 years and not to panic.  My reproductive endocrinologist, Dr. Cool, came to see me too.  My ovaries now exist as 15 test tubes of primordial eggs, one actual egg that they found during the surgery and these little estrogen patches that I’ll wear on my abdomen forever, so that my boobs don’t sag and my vagina doesn’t fall out and my bones don’t crumble.  I start chemo next Thursday. 

My posts won’t normally be this long, I just thought bringing everyone up to speed was a good idea.  This blog is our coping strategy, out outlet, our fuck off to cancer.  We’ll be funny, we’ll keep you updated, we’ll post pictures of the puppy I’m going to get and the outrageous wig collection I’m going to accumulate.  We won’t always talk about cancer.  Talk back, write a guest post, tell me about books I should read on my tumor vacation.  I lost the script to my life, as Joan Didion might say, the story I was telling myself in order to live has changed, it’s undergoing a massive re-write.

Love,

Zebra

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