The Word: A breast-cancer blog

The Word: A breast-cancer blog

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Part one 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.

April 2, 2009

Three weeks and a day

Hello, world!

It’s fitting that I’m finally getting around to posting a main-page message today, as each day since Wednesday, March 11, has so clearly been a race to get to this day ... the one where we start chemotherapy treatments.

A pal left me her rendition of the “Rocky” theme on my cell this morning, just in case I wasn’t already greasing up for the fight. It’s a total cliché, but I guess that’s how clichés become such (because they’re completely and totally appropriate). So, yes, I’m greased ... bring it on! And I’m well-fed from a hearty breakfast (treated by two lovelies, who also shall remain nameless as they informed me that today would be the last day they would be nice to me — you know, so don’t get used to all this treating and niceties and such).

A diagnosis of inflammatory breast cancer (IBC) was delivered three weeks ago Wednesday, after I found that lump in the pit of my right arm while shaving in the shower a few weeks before that. Finding a lump like this produces the feeling of getting kicked in the stomach. It’s the feeling of realizing that your life can easily come to a grinding halt. And the challenge since then has been to ensure that it doesn’t — figuring out how to “function” while in the midst of more unknowns than normally tolerable for this control-focused little girl.

The diagnosis that came might as well have been delivered with a starting pistol, because that’s when the race began. That first week that began on Monday (with the mammo, ultrasound and biopsy) was a mad-dash blur of fright, sadness and scrambling to find information, resources and support. Going from knowing nothing about cancer to knowing that I wanted to know everything ... and realizing that I needed to identify what I needed at base level to function through a crazy-making time and a time that doesn’t present with clear answers, just loads of possibilities. Those base-level week-one needs included things like encouragement and strategies for getting out of bed in the morning (that Tricia and I concocted together ... for each other, as we both needed some help early on in this area). The base-level needs to press doctors for information and to allow people to press for me (to get appointments moved up and to move small mountains on my behalf). And, the need to carry on as normal as much as we can even though it’s anything but that at this time. All of this was combined with the task of telling family and friends unexpected news and realizing that we just didn’t have the time (much less the emotional reserves) to personally talk with everyone we wanted. It takes a lot — and, so an idea for a blog was also born.

We also began a speed-dating-like series of meetings with doctors, trying to assemble my team. Unlike other forms of breast cancer, IBC doesn’t start with surgery. The oncologist is the captain of this team and is supported by a breast surgeon (who plays a starring role later in this game) and I met with three of these docs — one in private practice, one at a mid-sized hospital and one at the “biggest and best” hospital. I don’t at all come from the perspective that bigger is better (having had the experience of running a small, specialized agency for nearly a decade and knowing that there’s true value to individualized and “culturally specific” treatment and services) ... and knew that my more rare form of cancer is from a “culture” that will require specialized/individualized attention and aggressive care. My cancer shouldn’t really be in the “general” queue because it functions differently, constantly trying to jump the line and grow a little faster, and is rather sneaky in that its cells are small in size and can hide.

I was pleasantly surprised that the big hospital (UPenn) was better in my case — better in that they’ve seen more cases of IBC and better because the doctor I’m working with has specific expertise with IBC and very specific treatment options that will be a part of my plan. Kismet!

The upshot of all of this is extremely favorable — no sign of activity or progression to any organs, though there is an area of concern in my lower back (a previous injury site). We’ll know more about that soon, but the treatment if we have any issues there is, guess what (?), chemo! And chemo is on the daily specials board already, so we’re set. We’re totally set. I also found that I have the right chemistry to receive Herceptin (a wonder drug of sorts that only 25 percent or so of breast-cancer patients can take), which means I’ll be able to do a triple-combination therapy of the cancer kind — which is all very good. It’s a “cocktail” of sorts, and I do enjoy myself some cocktails. I’m ready. All of the news since the initial diagnosis has been great ... which inspires this note of positivity that carried me through to each next day in getting to this starting line of treatment.

So chemo begins today — a giant unknown. Unknown in how it will work and how it will make me feel. The order is for weekly treatments beginning today (three weeks on, one week off) at least through the summer.

I’m greased up for the fight.

I am Rocky. “Rocky 2” (when he wins) ... not the draw in “Rocky 1” or the big fight with Mr. T or the Russian for that matter. Tricia is both my Adrian (Yo!) and my Mickey (Burgess Meredith) and I have a crowd of fans rooting for me at the Spectrum.

And while “Rocky” might be a cliché, I’m not.

It just is.

Hey! Ho! Let’s go!

April 2, 2009

One down, 17 or so to go ...

Today’s treatment was much like the first day of school.

The first day of school is all about going to a new, strange place where you don’t know anyone but the people there know that and are there to make sure you integrate well and find your way. It’s also a day when you’re nervous about what is to come, excited and hopeful — this first day was just the same. After vitals, I met with each member of “my team” separately to go over certain specific things. An orientation and lots of invitations for questions to be asked.

We’re looking at six months of chemo. Three weeks on and one week off, so that’s approximately 18 treatments. Of course, this number (much like my eventual choice around headwear) is subject to change, depending on how things are going and results of other periodic tests. Today was a long afternoon (six hours) with all the orientation stuff to do first, and I’m told next week will be shorter (two hours). Since this is my first time taking Taxol (the chemo) and Herceptin (the protein drug), they do some extra monitoring in case of a reaction to the drug. A reaction would have been immediate (within five minutes) but nothing happened. As a preventative measure against a reaction, they gave me a course of Benadryl, and something else for nausea. It pretty much knocked me out — I remember telling Tricia, “Oh, I’m going to be knocked out soon,” and just as quickly my iPod became super heavy, plopped in my lap and I was out. Future treatments won’t feature the Benadryl as this was just for this first time ... so don’t worry, I’ll be good company if you want to sit with me and watch a movie or chat on a given Thursday for treatment.

I was told I should look forward to being achy tomorrow but shouldn’t expect much in the way of nausea.

We left and I really just wanted a walk — what a pleasant evening! So a quick walk to the green line (Tricia would have preferred a taxi but I really wanted to move after hanging out in that cozy LazyBoy all afternoon) and we were headed home. Dinner at the Cantina made me feel like it’s just another day on the verge of spring ... even though I know today is one totally like no other, and one that provides a window to the days and weeks and months to come.

It’s funny, I don’t feel any different, even though I had a lot of fluids flowing in me — tethered to my port, which is located in my chest. This much is strange in a “Star Trek” kind of way.

One down, 17 or so to go. I’ve crossed the threshold and am on the verge (like spring).

April 9, 2009

The day(s) after chemo and “treats”...

I read on some board that some people refer to their chemo treatments as “treats” for short. Seems kind of off, and a little too grateful if you ask me, but we’ll go with it. I’ll enumerate the kind of “treats” I can look forward to later ...

My normal day of treatment is Thursday, but I was moved back a day this week to Wednesday for the Passover holiday. So, that means we’re through the second chemo treatment. All of this is still a giant experiment, in terms of how my body reacts to the chemo (during, immediately after, the next day, as well as day two). So far, so good.

I would also insert a knock-on-wood image, if I could find one. Anyway, so far so good, and we go with the good around here. As mentioned above, there is still an experiment underway in terms of reaction, as follows:

— During: to ensure that there is no reaction during the actual chemo treatment, I am given Benadryl (in IV-bag drip formula, not pill form). Last week, the bag was a half-hour, this week it was 15 minutes. It takes me to a loopy place, though this week it didn’t knock me out. I also get Tagamet (also through IV), which is to prevent any stomach issues and nausea during chemo. Both are given in advance of the chemo (Taxol), which sometimes has a side effect of skin rash and/or anaphylactic shock! Oh, just a little anaphylaxis, Gloria, no worries. No worries. So, for the first couple minutes of both the Taxol and Herceptin drips, they literally look at me for signs (of skin rash and anaphylaxis). Once the coast is clear, after five minutes or so — they’re out. Let’s all just hope that I don’t suffer from delayed “reaction” — ever. — Immediately after: mostly loopiness from the Benadryl. I don’t mind, really ... in fact, this is the one actual treat, if you follow. They say I shouldn’t drive after ... I understand why, but the walk back to the subway has been lovely — both times ... could have been the company, though. — Next day: flu-like symptoms, body aches, upset stomach. So far both “next days” I’ve experienced have featured a bit of a morning haze, which I’m now convinced is a Benadryl hangover as I didn’t have much of anything today (likely because of the smaller dose this week). The morning haze is feeling a little like there’s furry things running under my skin (we’ll call them the sweater people) for the first hour or so of the day ... a dose of Tylenol usually takes care of that. Accompanied by a runny nose in the morning (also gone by hour two of the day), but no other flu-like symptoms. No body aches or upset stomach — yet. — Day two: body aches/pains, generally laid up, upset stomach. We’ll see what tomorrow brings but last week brought the previously blogged crystal-meth-like cleaning spree of last Saturday. Energy abounds! While I have no firm plans, I have many pre-Easter errands I could do, if so able or if with such energies ... no pressure though. We’ll see. I’m off work for Good Friday. — Beyond (as in, cumulatively or longer-term while on chemo): Now here’s where the true “treats,” if you will, are found. Such treaty-treats as hair loss (obvious), joint pain, immune-system issues, bruising and anemia related to low blood counts, mouth sores and thrush, dry skin (I already live with the “treat” of eczema), and my personal favorite “treat,” peripheral neuropathy. Now, to be fair, most of these are temporary, while on chemo and shortly thereafter. What’s striking to me are the vast similarities to my previous direct work in HIV/AIDS. These “treats” show there as well for the most part, along with a few similarly unseemly others. I’m placing my bets on the dry skin, hair loss and likely peripheral neuropathy (especially in the joints and fingers) and I’ll hope they’re all temporary. I mean, I am (relatively) young, after all ... and, most importantly, otherwise healthy. So far, no sign of any of these guys, but again, these are the “treats” to look forward to. Full disclosure noted and filed.

So, we go with the good (for, hopefully, the now-obvious reasons). And, believe me, I felt very good yesterday when my team inquired about any side effects I may have had from last week and went through all of the possible effects of “treats” I just mentioned in quick order. It was my true “treat” to say, “No, not that” to every one. So far.

Oh, and the other good news of the day yesterday was that all blood levels looked good. They do bloodwork every time and review results instantly. I could use some iron; these levels have been consistently low for me (even before the cancer), so I started taking a multivitamin with iron supplement as of last night and put in a special request to Mom to cook me up some liver — with the quickness.

Nothing says love like liver. Thanks, Mom.

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