The Word: A breast-cancer blog

Part two of a series

In March, Gloria Casarez, director of LGBT affairs for the Mayor’s Office, was diagnosed with breast cancer. At 37, the out lesbian had no known family history of breast cancer. Throughout her treatment, she kept a blog, titled “The Word,” to keep friends and family updated on her progress. In honor of Breast Cancer Awareness Month, an excerpt follows. Casarez had her last chemo treatment on Sept. 3, and has started monthly maintenance treatments. For previous entries, visit epgn.com and search for “Casarez.”

April 21, 2009

Shiver me timbers = anemia

My sneaking suspicion was confirmed while at my final chemo treatment of round one last week. My red blood-cell count had dropped some (giving me the chills) and, more importantly, crossing me over the threshold to anemia.

I’ve had this run-in before. In high school I was a fainter … low blood pressure, borderline anemic. Good times. The docs were monitoring this already as it’s super common, and my counts were already low. I’m told that a “normal” woman has a red blood-cell count range of 11-12, though the 10 range is not a big deal. The previous week they had looked back at my numbers because I was coming in at a 10.2, which is on the low end. They found that I had only ever been at about a 10.5 when looking back to about a year or so ago. My “normal” is low and I can thank my mom for that, I suppose. She, with her iron-poor blood. Finally, a genetic predisposition in all of this! They weren’t too concerned with these numbers last week, told me to eat some liver (I did), and take a multivitamin (I did). But, no luck, we dipped a little more.

My current number came in at 9.4, which isn’t low enough to make us have to stop a treatment session (though it could later down the line if we still have problems), but is low enough to give me a red blood-cell booster of sorts — Aranesp. And, it explains the chills and feeling of being cold, which was not helped at all by the recent damp weather. Red blood cells are good because they carry oxygen from the lungs to the body’s muscles and organs. We need this.

There are three things the doctors are looking at every week: red blood-cell count and anemia, white blood-cell count (to fight infection) and platelet count. Chemotherapy kills cells — all cells, even the ones we need, like the red and white blood cells. So, we pay careful attention here. To me, all of this seems to be a bit of a balancing act. A positive way of looking at this is anemia means the chemo is doing its thing — killing all that is in sight. So, I got a “booster” of Aranesp so I can continue to sit at the table, as it were, and get more “treats.” More “treats” please! The docs said that since my count took this nosedive after the second week of treatment, they’ll prescribe the Aranesp again after the second treatment in round two as a preventative measure. They’re still learning, here, and charting the course while we sail.

But the big news of the week is that we successfully made it through the first round of chemo!

I escaped round one with my hair intact and no real ill effects. I couldn’t really feel the effects of the low red blood-cell counts, except for the coldness, so I’m feeling good and ready for seconds and thirds. But first, a week off to recuperate and rebuild those reds, whites, platelets and marrow.

So, I’m anemic — a word that always conjures images of hungry vegetarians and light-headed high-schoolers (me, back in the day). This isn’t a land-ho moment and our ship has not run aground. It is a booster and an amendment to the course … the end of round one.

April 27, 2009

A date with the clippers …

My hair is falling out. Big time. This means all of the hair, but I’ll save those other details for another post. We’ll keep today focused on my head.

I have a date with the clippers (this Wednesday … though maybe sooner, if necessary).

A few strands began last week “giving up hope,” as I’ve been calling it. I ran my fingers through my hair the one day and got a take-home present of a few strands. I wasn’t super-concerned. It just seemed as though they had given up. They hung in there but really had no reason to hang in anymore. That’s how it began. I do find it funny that my hair decided it no longer had the will to live on my “off” week — no chemo treatment this past week, but that’s exactly when it started falling out … like on cue. I guess this chemo stuff is “working” (as the balding and anemia might suggest).

This weekend was more like, “Hello, furry hands” — each morning in the shower. It was like I was using Nair instead of shampoo. But, it’s still not exactly as I thought it would be. Having started this journey uninformed and partially expecting to wake up with my full head of hair on the pillow one morning, I later read many articles about hair coming out in clumps. It’s not exactly like this — it’s more like many strands at once. My hair is so straight that it doesn’t readily clump, I suppose. But still, I was sort of expecting, I guess, patches of hair or something. In this way, I’m relieved. No one wants to look “patchy” … and, I’m surprised that having lost so much hair (I’d say almost 50 percent over the last week), it really just looks like I got a haircut — a thinned-out haircut.

But, it’s messy — this losing-hair business. I’m shedding. And there’s hair everywhere. In the tub, on various floors, certainly on my clothes, on the dinner plate and inside the hat I’ve been wearing to sleep in order to avoid having hair all in the bed.

I’ve been lint-rolling and dust-busting away. In this way, I’m much like the cat. She’s also shedding at the moment, losing her winter coat. I’ll take the optimistic route to note that at least I’m not throwing up hairballs like she is. At least that. Oh, good times!

So a date with Yexsy to come by on Wednesday to clip the rest away. A few friends were suggesting that I just cut it shorter (which I was considering), but I don’t think that will work, judging by the volume that came out at over the past five days.

I have a few work events I was hoping to get through before this date with the clippers, but my head obviously has other plans. It’s tricky because once the hair is gone, I’m not going to be able to be “d-l” about things, as I’ve been. The head will invite unwanted questions from strangers and notes of concern from not-as-close colleagues, and people in the world in the form of second glances. “Is she a dyke … or does she have cancer?” — people might wonder. Umm, yes. And yes. “Should I call her a name … or feel bad for her?’ — others may weigh. Umm, no. And no.

At least right away, I wasn’t planning on having to “disclose” — as in, this week. In this way (and many others), cancer is so very inconvenient. I’m not being sarcastic. It just is. I see why people wear wigs (even though I won’t). I am acutely aware that I’m not really in control here (as we know). And so, we control what we can and I’ve decided that it’ll be Wednesday — just don’t call me “Baldie-locks.” I’ll kick you.

Enough pals have told me that the ladies adore the shaved-headed girls that I’m cool with this. It’s unwanted, but it’s fine. And, Tricia gave the green light for some much-needed retail therapy yesterday. We got Rock Band (!!!), and had a two-person musical throwdown last night. Feel free to invite yourself over. I know you wanna …

May 15, 2009

End of round two: tumor markers down … way down!

So the end of round two also ended with some very good news. For anyone worried by the heading, tumor markers going down is a very positive development. Just after the first session in round two (each round or course is made up of three sessions), we did our first post baseline testing to see how we’re doing. All indications (visual and physical response to the chemo) have been exceptionally positive — I’ll spare you the details of the visual changes to my breast but will say that soon after beginning chemo, the “cancer side” quickly began to look normal again — hardness down, symmetry looking right, heat down, etc.

Anyway, the docs did two tests to look at my tumor markers. Wikipedia describes a tumor marker as “a substance found in the blood that can be elevated in cancer. There are many different tumor markers, each indicative of a particular disease process and are used to help detect the presence of cancer.” Now, for those among you who may now be worried that I’m getting my cancer information from Wikipedia — I’m not. It just describes things in basic terms sometimes (for me and for you). Specifically, the doctors ran tests on CA 27-29 and the CA 15-3, which are both tumor markers for breast cancer.

The long and short of it is that after only four treatment sessions (we ran the tests before last week’s chemo session [No. 5] and got results yesterday before chemo treatment No. 6), my tumor markers have been cut in half! Half! Yes, half! After just four sessions (of an originally ordered roster of 18 or so … I always assume the “or so” part means more so I was/am prepared to go more than 18 sessions). So, we’re elated. I actually got the results first from Jenny, the oncology nurse I work with every week, so I saw them before my doctor did a few minutes later. She was also elated … I got to watch her reaction and, dare I say, she looked surprised.

The tumor markers are important because, certainly, they shouldn’t go up. That would mean the Taxol wasn’t killing the cells and/or that the Herceptin wasn’t blocking the protein that tells the cancer cells to replicate. That would be bad because we need the chemo to work — that’s the treatment at this place in the game. Ideally, we should see the tumor markers go down, and to see them go down so quickly and after just a few sessions, we’re looking really good. This is when it’s especially good that I’m on two chemo drugs that attack in different ways — they help each other and seem to get along well.

Everything is working a little better than anticipated in the beginning. Basically, my body is responding very well to the chemo on the inside, as it is to me in terms of my energy and so forth. I’m aided by eating foods to help the other areas (like things to help my predisposed and challenged red blood cells — like iron and protein). It’s also a good thing I live with a dictator … Really, she is. Don’t believe all the sweetness and smiles; the dictator is there too. And, we love it/her … especially in this way when it comes to eating things to help myself along. Really, I’m quite lazy and may otherwise cut corners … or (more likely) forget.

So, we’re thrilled — of course.

They ordered up the more conclusive tests for the end of the third course, which will fall in mid-June. This would be at our originally projected midway point. At that time, we’ll redo the MRI and the PET CT, which will look at my whole body again, as well as my breast. These tests are super-important, as they are the ones that confirmed I have cancer to begin with. If the results of these tests agree with the tumor-marker findings, Dr. Demichele said we can revise our initial chemo projections — revise, as in reduce. Should the tumor markers continue to half as they did, they would be close to (or at) “normal” range by this time.

We’re going into the third round bolstered by this and feeling strong overall, though I think Tricia is kind of wiped by all of this — the cancer, her graduation, stepping in as the in-house deck construction foreman (which essentially wraps today), family in town, life in general, etc. For me, my hair may be gone, but it’s for a good cause. And, I still have my eyebrows and coveted eyelashes … for now.

It was fitting to also have a gang of girls with me yesterday for chemo. Originally supposed to have Olinshar and Tami to keep me company, we were joined also by Sarah and had a quick visit from Courtney (who has happened make a stop in every week now — convenient to work in the building … and welcomed for the visits and for bringing basically awesome mix CDs for me to take home). I think four people is the capacity … my cushy LazyBoy takes up some room and I’m not giving it up to make some more. And, they all/each brought snacks, which were tackled (mostly by me) along with Shauna’s every-other-week bag of real chemo “treats.” Shauna’s are healthier than the crap we had. Both/all are good … especially when the news is as good to match. Thanks, girls.

Next week: Mid-point results.

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