Archive | December, 2010

Because Nothing Says Drama Like a Bloody Nose

16 Dec

I have days where it’s easy for me to feel normal, even feel well. Like yesterday. Despite being bald and all I had a lovely day. I made holiday cookies with my mom, watched the adorable documentary Babies and got to wear my apron. Drama free.

yes, i'm kind of dancing in my apron...that's why it's blurry

Or like this past weekend. Chris and I spent a lovely afternoon reading and eating at one of my favorite bars.

yes, beer is allowed during chemo

Then we decorated our Christmas tree. Very domestic.

Penny and our Charlie Brown tree

I have some semblance of normalcy.

Then there is today.

I woke up with big plans for a cancer patient. Walk the dog, do some yoga, go to the dermatologist and pick up a special prescription mouthwash to soothe my sore mouth. You know, dream big. The first sign that things weren’t going to go as planned should have been the bloody mucousy blob I sneezed up while getting dressed. See, I’ve been getting nosebleeds lately. Little ones that take maybe a minute to stop. No big deal. Avastin tends to make blood vessels more friable and my platelet count has dropped below the normal range. I sort of figure nosebleeds are to be expected. That said, my marvelous chemo nurse scolds me when I don’t call her when weird things happen, so I’ve been keeping track and reporting in.

This morning, I ignored the bloody mucousy blob. Why? Because I do denial right. I swaddled myself in my long puffy coat, big hat and scarf covering half my face and headed out to walk Penny. About 15 minutes into my walk I felt the distinct below the nose trickle that has come to mean to me: nosebleed. Previously my nosebleeds had been one, maybe two trickle nosebleeds. Wipe away and move on sort of things. I tried this classy technique on my walk. More trickles followed. Hmm. I realized, due to my denial I chose not to bring any tissues with me on this walk. Hmm. I also realize that I’m still 10 minutes or so away from home and I really like this scarf. And these gloves. Oh dear.

Suddenly, this turned into the worst nosebleed yet. Worst nosebleed ever! I was on a busy road, standing across the street from the firehouse, leaning over, trying to let the blood just flow on to the ground in an attempt to spare my winter clothing. This quickly failed. I cupped my gloved hand under my nose and try to hustle back home. My glove transformed from ivory cashmere to bloody mess. Finally I surrendered, taking off my glove and stuffing it under my nose.

So yeah, if you were driving around East Haddam this morning and saw a deranged looking person wearing a purple Steve Madden hat and clutching a bloody rag (that used to be a lovely glove) to their bloody face…that was me.

I made it home. But blood, it turns out, makes a big old mess. I removed my glove from my face and woah! Suddenly there’s blood splashed all over the floor! I try this process again, leaning over the sink with some toilet paper ready and woah! Somehow blood still ends up dripping down the cabinets! I also may have accidently touched a white towel. Woops.

The bleeding has stopped. Finally. My gloves are soaking in some detergent. My day is going to proceed. I’m going to skip the yoga as any time spent upside might make it all just start back up again.

And all this before my first cup of coffee. What else will today bring? Whatever else happens, I hope it happens after I get to CVS and stock up on those little tissue packet things.

The CA-125

9 Dec

Slate magazine has an interesting series of articles going now, written by Michael Agger, about the phenomenon of self-tracking. Agger examines the different ways that people self quantify, measure and track everything from diet to carbon footprint to moods, plastic use and commute to work. The articles ask how (and if) we can use this data to improve our lives. Readers are asked to contribute their favorite and most useful method of self-tracking. Check it out here.

I am totally a sucker for self-tracking. I’ve kept food journals, graphed my bicep circumference over time, used an iPhone app to chart my menstrual cycle, use not one but two Moleskine notebooks daily and literally got giddy with excitement over the odometer I put on my bike. Despite all this indulgence in the habit, my feelings about self-tracking have always been mixed. Isn’t there something a touch narcissistic about it? A little righteous? And does it actually make a difference in my life? Do anything constructive?

Now, cancer has opened up all kinds of fun and dubious methods for me to self track. This blog for instance or the three places that I keep track of my chemo schedule (refrigerator, iPhone, Moleskine), and, of course, my CA-125 level; my cancer’s fingerprint that is measurable in my blood. The doctors have been using this slippery little test to monitor my cancer and the progress of my chemo. I say slippery because CA-125 levels are notoriously tricky…an elevated one doesn’t necessarily indicate cancer, a normal doesn’t always mean you don’t have cancer and not every ovarian cancer even tests positive for this marker. Mine did, which is nice because now I have something to graph, which delights me.

It’s looking pretty good if you ask me. I’m trying to take it all with a grain of salt, exercise the “cautious optimism” advised by my doctors. I think we can at least say that my cancer is sensitive to the carboplatin and taxol chemo. My CA-125 level was down to 12 the last time we measured it. I can swallow that number, get my head around it. The normal range for someone with a history of cancer is considered anything below 21. There are no real conclusions to be drawn from this yet, it’s too early. But psychologically, I am delighted to watch that number march down each time we measure it. For what it’s worth, I plan on hammering that thing into a nice flat zero.

Chemo Lounge

2 Dec

I read that in the early 1970s, chemo wards used to have heavy mesh on the windows to prevent people from committing suicide. I’m happy to report that the wards have gotten a bit more upbeat since then; probably because the drugs, while still inherently toxic, have gotten better (apparently one used to be a derivative of mustard gas).

My chemo ward doesn’t make me want to jump out of a window, but I can’t say that I really look forward to going. Even though my chemo nurse is the best and they have lots of snacks, it’s a strange and difficult place. As I suppose any place where everybody has got cancer is. I think what was most surprising to me is how non-private it is. I sit in a vinyl, hospital version of a La-Z-Boy right next to another patient and sort of facing my companion for the day who sits right next to the other patient’s companion. It’s all very cozy and by the end of the day you know everybody’s biz-nas. Who’s constipated, who’s got breast cancer, cervical cancer, ovarian cancer, when their first surgery was, the second, the third, who’s got a port, what trial everybody’s in. Some people want to make small talk. Some people like to discuss the particulars of their cancer and treatment. Some people don’t like to talk at all. Some people read books, some watch TV. Some people show up dressed impeccably and all made up. Some people come wearing sweatsuits and sneakers.

I’m the youngest patient around by 30+ years. I sat next to a patient who was there with her 60 year old daughter the other day. It’s like a strange cocktail party. People are polite, cheerful, and there are large lulls in conversation. There are strange moments of deciding – do I show the quiet 65 year old next to me this stupid dog tricks video from youtube because I’m watching it and talking with Chris about it Is it rude not to show it? Rude to show such a silly thing to a sick person I don’t know? Chris and I might be discussing my concerns about cleaning the humidifier (I’m paranoid that anything you use to clean the humidifier becomes aerosolized and therefore weaponized…but I guess any bacteria left in there does the same) but should we ask the opinion of the quiet couple in our peripheral vision? What do you say after your chemo nurse gives you good news when the person next to you doesn’t seem to be getting anything but setbacks?

I suppose there is some sense of community. We all sit there together, we’ve all got cancer, we’re all fighting cancer. We’re all in the land of the sick. You do get to find out interesting things about people. Like the fact that they’ve named the pump thingy they have to wear after chemo “Horatio” because they don’t share the bed with strangers. Or that they’re going to Southern China for two weeks over Christmas. Or that they were married to a pilot. The conversations generally end with a firm handshake, eye contact and a solemn “Good Luck.” We really mean it.

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