Finally, an update

Pre-surgery selfie, taken under the influence

of some really nice narcotics. 

Yikes.

It's been, like, awhile since I've updated this thing. It was never my intention to be such a slacker, but writing about this stuff is hard. To start, I don't like writing about myself. Throw cancer into the mix and you get a good dose of resistance.

But, to pick up where I left off: I finished chemotherapy two months ago. That last round punched me in the gut, literally. Tums, I learned, are a wonderful and cheap remedy for gnarly stomach acid. They come in fruit flavors, too. I was popping those things like candy. It took nearly four weeks before I was feeling semi-normal and then the clouds parted, the sun came out. It was glorious—and I don't mean that lightly. There's nothing better than feeling better after you've felt crummy for so long. I'm still stoked by little things like being able to run up a flight of stairs or drink a glass of water without it tasting like stale toothpaste.

My original schedule had me getting permanent breast implants on June 6. But, those plans were foiled by an infection that almost put me back to square one and moved the surgery up by three weeks. Here's how it works with a mastectomy (if you opt for the type of reconstruction I opted for): after the breast tissue's removed, the surgeon places tissue expanders under the pectoral muscles. The expanders have a small, flat valve-type thing located on the surface and a few weeks after surgery, you start going in weekly to have (in my case) 60cc's of saline added via a large need inserted into the valve. It doesn't hurt because you basically have no feeling in your breast at that point. This slowly stretches the muscle and creates a pocket for an implant.

I did three "fills" and was done with it. The best reason I can give for stopping is that I have a blouse that I really like that I used to have to secure with a safety pin—it was a bit big small in the boob area. Now it fits. So, there you go. If someone asks my bra size, my response is 300 cc's. (If you're wondering about the math here, the tissue expanders had 120 cc's in them to start.)

Between the end of September, when I had my mastectomy, and right before chemo started at the end of January, the tissue expanders went from feeling like I was wearing a bra made from coconuts to feeling like I was wearing a bra made from cardboard. Most of the time, I forgot they were there. Then chemotherapy happened, which seems to target any place on your body that might cause pain. That tennis elbow that bothered me in high school? Chemo rolled out the red carpet for its return. I had my tonsils removed when I was 19, but it felt like they'd grown back. The tissue expanders were the worst. The muscles holding them in place punished me endlessly. Jerks. It felt like someone was tightening a metal band around my chest that sometimes had small pins in it. Needless to say, getting them out was nice. Now it merely feels like I'm wearing a snug bra 24/7. I can handle that.

Friends have been asking how I'm feeling. When I say "Good," I mean it. I haven't had a bad day in several weeks. Talk about perspective. As for the future, I just have to check in with my oncologist every three months and report any weird aches or pains. For the next 10 years, I'll be taking a drug called Tamoxifen that can cause some unpleasant side effects (so far, the worst has been that my hands feel a little arthritic in the morning) but it works to starve any stray cancer cells. I'll gladly trade stiff hands for a long(er) life. The type of breast cancer I had tends to take some time to recur—if it's going to come back at all—and if it does, it's terminal. That's scary. My mom fought breast cancer for 12 years before it spread to her brain. But her sister is a 20-plus-year survivor. Because this was genetic (BRCA2), I also need to consider getting my ovaries removed due to a heightened risk for ovarian cancer. But, right now, it's something I'm not really thinking about. Or trying not to think about.

I've been a bad blogger—and here's why

Me in the ER looking lovingly at a unit of blood

Nothing like illness to remind you that there's a lot you can't control. But still, you try. Pre-chemo, I did my research. I had lists of vitamins, alternative therapies to alleviate side-effect X or complication Z; I made sure anti-bacterial wipes were always within reach. And I was going to keep my hair from falling out by freezing my scalp during each infusion.

First treatment was easy—at least that's what I thought when I got home that night. To the extent that I can be cocky (not very), I showed up cocky the next morning, a Thursday, to get my Neulasta shot—an injection that boosts your white-blood-cell count to prevent infection (and causes killer bone pain unless you load up on Claritin and Advil). "By Saturday, you'll feel like you ran a marathon," the nurse warned me. She was right. Saturday, Sunday, Monday = blah. By Tuesday I was feeling better. On Wednesday, the chemo clouds lifted.

Second infusion three weeks later, same thing. Then the little bleeding incident I wrote about in my first post. Like I predicted, I ended up in the ER—my hemoglobin count had dropped to 6.1, which is considered life threatening. I got two units of blood and could have easily used a third, but that would have required hospital admission and there was no way I was going to spend the night in the hospital.

So, I went into Chemo #3 a little short on hemoglobin, the thing that carries oxygen through your blood (or something like that). I was knocked on my ass. Just exhausted. Food tasted awful, which killed my whole eat-healthy plan. All I wanted was pasta. And, like with any sustained episode of feeling crappy, I started wondering if I'd ever feel OK again.

Then Friday morning the chemo clouds lifted, the birds were singing. It was a gorgeous day. I went to work, I got a lot done and told my husband we were going out that night. And we did. We met a couple of friends for dinner and a movie.

Around 11:30 that night, the hives appeared. I only know they were hives because I looked up pictures online. I've never had hives before in my life. I have no real allergies—too many strawberries make my eyelids itchy, codeine makes me vomit, and that's about it. But on Friday night, I had red welts on my legs, neck and, oddly enough, left thumb. By Saturday morning, it looked like the left half of my upper lip had had a bad run-in with a silicone injection. I took two Benadryl, fell asleep—serious stuff, that Benadryl—and woke up four hours later with a swollen right eye, tightness in my throat and even more hives.

So, we went to the ER. Again.

ERs are about fixing problems, not necessarily determining what caused them, so I still don't know what I'm allergic to, but whatever it was, Pepcid, steroids and a prescription allergy medication fixed me up by the next morning.

Hives aren't an uncommon chemotherapy side effect, but they usually happen within a day or two of the infusion. It'd been more than a week for me. Could it be related to the blood transfusion? Maybe, but unlikely. I didn't eat anything I don't normally eat, take any medication I don't normally take or use a lotion or soap I don't normally use.

Sunday I was better and went to dinner with a dear friend who was visiting from Boston. Monday, I was fine. Monday night I started feeling icky. Tuesday morning, I was feeling worse. I had a story due at 1:30. How I finished it, I have no idea, but I turned it in, ran to the office bathroom and vomited. The vomiting continued for a few hours. "At least I don't have a fever," I told my husband. As if on cue, my head started feeling hot. Over the next two hours, my temperature went from normal to 101.3. For a chemo patient that's bad. Very, very bad.

A third trip to the ER? No chance. It's a $100 co-payment each time. That's a stupid reason not to go, but, amid the fever, all I could think about is how ER co-pays were undermining the gift cards I just got for my birthday.

I took two Tylenol and my husband got out of the freezer the three-inch-wide bands that are part of the cold caps I've been using to keep my hair. For the next couple hours, we wrapped them around my forehead. And, my fever dropped. By midnight, it was just under 100 and hasn't gone back up since.

Maybe there are things we can control. Or maybe it was luck and the 24-hour flu.

Introduction with a good dose of whining

Me, looking a little pale, and my cap at
February chemo sesh

For two weeks, I was obsessed with my hair. Specifically, whether it would stay on my head. My first chemotherapy infusion was on Jan. 29, during which, for seven hours straight, I wore crylon-gel-filled caps, chilled on dry ice to -27 degrees Fahrenheit. The caps are supposed to put hair follicles to sleep and prevent them from absorbing chemotherapy drugs. Is it painful? Only for the first five minutes per cap (you switch them every 30 minutes). And, yeah, I ended up with a bit of frost bite on my scalp and ear. But for the type of chemo I'm receiving—Taxotere and Cytoxan—there's reportedly a 90-percent success rate with the caps. Two weeks after the first chemo, I started shedding like a cat in Texas in July; but we have 100,000 pieces of hair on our heads, and I think I've lost only about one-quarter of that, maybe one-third. At first, I tried to scoop up all the stray hairs to get some sense of the loss rate, but ended up just tossing the hairs in the trash.

But now hair loss seems silly. Chemotherapy's supposed to shut down a woman's ovaries and temporarily (for some, permanently) put an end to periods. They call it chemopause.  For hormone-sensitive cancers like mine, that's supposed to be a good thing. But my ovaries instead appear to be pissed off. I've had heavy bleeding before; last year, I needed a blood transfusion. And it looks like I'm heading in that direction again. My red-blood-cell and hemoglobin counts have plummeted since Friday. I can't walk five steps without getting out of breath. I can feel my heart struggling to pump blood. It's scary. And it all makes me very angry. Having needles stuck in my arm is at the top of my list of things to avoid—but, whatever; I deal with it. Feeling awful, missing work and generally being useless is what's bothering me. I'm a reporter / editor at a small alt-weekly and I put a lot of pressure on myself to do well. But, since I was diagnosed with breast cancer in early August, my work product's declined. The diagnosis was followed by a bilateral (double) mastectomy in September, then two rounds of IVF (my husband and I didn't realize how much we wanted a kid until faced with the possibility of never having one), which ended up being more emotionally taxing than the breast cancer (more on that in a future blog). And, now chemo, the side-effects of which are best described as feeling like you're coming down with the flu while reading a book in a stuffy car after not getting any sleep for a couple days.

Why am I writing about this now? I didn't feel like it until recently. Even then, I stopped and started this first post for a few weeks. But now, missing another two days of work; thinking about the stories I haven't been able to write and the ones that turned out less-than-ideal because I was feeling ill / dealing with bad news / nervous about treatment; sitting here in bed in a messy bedroom (that's part of a messier house) and thinking about all I've missed in the last several months... the least I can do is get this first blog post up. I promise future posts will be less self-focused and self-pitying and instead aimed at helping other women who find themselves in a similar situation—pre-mastectomy shopping lists! alternatives to Compazine! how to give yourself an injection and not pass out! And, at some point, hopefully the blog will turn a corner and focus on things that have nothing to do with breast cancer.