Wednesday, September 30, 2015

Meet the new hair...

So, it's my birthday, and I got myself a wig.

Well, actually, I returned a wig and bought a new one, both mail order. The original one didn't look all that great when I got it: I didn't like the color, and it was too long. It made me look like that snobby girl in Sixteen Candles (you know, the snob who was dating Jake Ryan and ended up with Farmer Ted), and all I could think was that Jami Gertz was going to come and snip half of the back of it off. Ultimately, my Pooh Bear ended up wearing it until I finally got around to sending it back. It looked about as good on him as it did on me.

For a while I figured I'd just be brave and go without hair for a couple of months. The scarves were working pretty well, and since the weather is turning cold anyway, it would be easy enough just to wear hats I already have, when appropriate.

A few things changed my mind.

First off, as flaky as this might sound, wearing the scarves has been limiting my wardrobe. While I'm not the biggest fashion plate, it bugs me when stuff doesn't go together. As a result, I've been wearing a lot of black. And while scarves look good with certain tops, they don't look great with polo shirts, which I tend to wear fairly often when I need something a little less informal but still casual. With them, scarves tend not to look like a fashion choice, but a necessity.

The bigger reason: I don't feel like standing out anymore. Or, more accurately, if I'm going to stand out, I want it to be for a reason of my choosing, not something thrust upon me. It'll be another six months before my hair is anywhere close to normal again, and I don't think I can manage a stiff upper lip for that long.

An incident in a restaurant the other night really capped it for me. Admittedly, I was already not in the best of moods - the place was more crowded than usual, and while we'd hoped to see the last couple of innings of the ballgame where the Mets were clinching the division, we ended up at a table with only a partial view of the TV. And the screen was tuned to the Yankees postgame. (Insult on injury, right?) The SO very kindly got management to change the channel, so I got to see the end of the game.

We had to wait a bit longer than usual for our meals, given the crowd, but the table bread kept me from getting hangry (I didn't want to chance the salad bar because I knew my immunity was tanking six days after chemo - salad bar sneezes could pose a big problem,) We finally got our food and were probably about halfway through eating when the couple at the table next to us got up to leave.

The woman stopped, apologized for interrupting and told me she hoped my treatments were going well. Her mom is going through the same thing, she said, so she wanted me to know I'd be in her prayers. I gave her the two-minute speech on my situation, and she said her mom's case is similar. She went on for a minute or two longer and then left.

That pretty much killed the evening. Don't get me wrong: she was tremendously nice, and I appreciate her good wishes. Maybe if I was in a better mood, it wouldn't have annoyed me the way it did. Thing is, I don't want to always have to be generous with my moods. I just don't want to be the target of reactions all the time. I want to control how and when people find out. I don't want to be forever reminded that I'm going through this extraordinary thing. I get enough reminders without the feedback. I just want to blend in.

The SO and I also have a charity dinner to go to next week, which I'm hoping I'll feel ok enough to attend. I seriously considered doing the turban thing, even trying a scarf wrap with a little black dress, which looked fairly okay, maybe a little Norma Desmond-y. Given the self-righteousness of some of the people I knew I'd run into (long story), I almost wanted to create an opportunity for comment, just so I could shove their self-righteous crap in their faces.

Chemo? You think I look sick?
But I realized I don't want to deal with the inevitable comments, even the benign and caring ones. I'd rather just have hair.

And fortunately the new wig arrived yesterday, my early birthday present to myself. True to the photo in the catalog, it looks pretty much like my last normal hairstyle, just slightly redder hair. Folks who haven't seen me in a while are likely not to even notice, as long as they don't look that closely. And really, who looks that closely?

Nobody. That's right.

Monday, September 28, 2015

Week eight starts!

Made it another week through... and one of those kinds of weeks I've come to expect won't be much fun.

Last we checked, I was taking the anti-nausea drugs to see if I could get through the days after chemo infusion with a minimum of barfiness and overall weariness. The good news is that I got over the hump by taking the drugs until Friday. The not so good news: the weariness remained. I guess there's only so much you can expect.

Tuesday, September 22, 2015

Week Seven -- yay!

Yesterday started week seven on the chemo journey, and all is looking good. My blood test results came back fairly good, with most of the "misses" being fractionally outside of the normal range. My doc is pretty satisfied with where I am.

Feeling pretty good about everything, I asked the big question: is there a chance that I'll continue to do fairly well over the next three rounds? She seems to think so. I'm not considering it a guarantee, but it does give me some hope. Maybe I'll get the hang of this routine.

Yesterday's chemo infusion was number three of six, had good chats with the infusion nurse and the nurse navigator, who always stops by to say hello and check in. Looking to prevent a redux of the icky feeling a few days after the last round, I asked the infusion nurse about the protocol for taking the anti-nausea drugs I was prescribed after the first round of chemo. There are two -- zofran, which is the preventative they give me in a drip before dosing me with the chemo; and compazine, which nails any sudden nausea. At least that's what they told me. She recommended taking the zofran right up, and if I need it, add the compazine.

I woke up kind of queasy this morning, so I started the zofran. My gut is still a little "different" but I've been able to eat just fine, with no nausea. I'll keep taking it for a day or two, see what happens. If I can avoid feeling totally crappy later in the week, I'll be happy.

Monday, September 21, 2015

Some great mysteries of chemo (hair edition)

Today starts my seventh week on this chemo regimen, and I've been collecting various observations on the mysteries surrounding the side effects of this whole process. I could tell you about the gastrointestinal stuff, but rather than grossing you out, I'll go for the easy part: the hair.* Here we go:
  • I got a buzz cut three weeks ago, yet I continue to see long hairs in my bathroom sink. Where do they come from?
  • Along those lines, I no longer have a cat. I no longer have much hair. WHERE ARE THESE DUST BUNNIES GETTING THEIR FUR????? Is there some sort of Hair Fairy that visits chemo patients?
  • Why is it that the gray hairs are the ones that are most persistently staying in my scalp?
  • Okay, I'll hit one gastro issue: why does Cafe Bustelo work when laxatives don't? (Not that I'm complaining, mind you.)
  • Back to that gray hair: why is it that it seems to be showing most prominently in the center of my scalp? I feel like that unfortunate black cat who knocks over the can of white paint in the Merrie Melodies cartoons, only to be relentlessly pursued by Pepe Le Pew.
I've considered asking my oncologist, but I think she's full up on my silly questions for now.

* To be honest, the digestive/gastro stuff hasn't been too awful for me. Not yet at least. Kinahora

Friday, September 18, 2015

The other day I had occasion to clue someone else in on what's been going on. I'd told her about the surgery before it happened, but realized I hadn't followed up with news about the follow-up treatment.

As I've mentioned, it's always interesting to see where the information takes people. This response just blew me away:

"Glad to hear that the surgery was successful and it is amazing to me that you are being treated for something that just a few years ago they wouldn’t have even known to check for (or had the ability to check). Simply amazing."

How cool is that? And, of course, she's right. So much research has been done, and so many new treatments have been developed, and more are being discovered every year. One perspective might be that the more they discover, the more they can tell you what's not treatable or likely to recur... but I prefer to think about the other end: you can't deal with what you don't know.

In any case, it's awfully nice to have people out there who can see the positives.

Tuesday, September 15, 2015

It continues...

Went in for a toxicity check yesterday, told the doc I've been feeling pretty good, and shared my suspicions that they didn't give me all the stuff I was supposed to get with the last dosing.

She laughed, looked at my blood test results and told me my numbers prove they did.

So that's that. Let's hope the next cycle works out as well. Maybe there's something to the practice of getting some nutrition when I'm still feeling crappy. Just for the record, forcing down a bottle of Ensure when you're not in the mindset of eating solid food? It appears to work.

Friday, September 11, 2015

Surprisingly good

It's getting close to the end of week five of chemo (13 to go, yay!), and I'm feeling surprisingly good. I've got the sniffles and a little bit of a sore throat, which are the expected byproducts of a reduced blood cell count, and the lower intestines are being a bit fussy (no more need be said), but other than that, I'm feeling decent. Appetite is good and I've been able to eat pretty much what I want (Taylor ham, egg and cheese burrito!), though I'm still avoiding red meat that may taste metallic. I've got good energy.

Somewhere between seven and 14 days after each treatment, my immune defenses take a hit, and if my temperature goes above 100.2, I need to call the doc for evaluation and a possible shot of something called neulasta to boost white cell production. I've been taking my temperature several times a day during this week, as I did during week 2 of the last cycle. Where I saw some elevation (never above 100) last time, this cycle has been near normal every time.

I'm really beginning to wonder if they gave me everything I was supposed to get this last time around.

Regardless, I'm not taking anything for granted and am appreciating feeling decent.

Tuesday, September 8, 2015

Downs and ups and downs and ups

So yeah... late last week wasn't much fun, which is why you haven't heard a lot for me in a week or so.

The steroids from Monday's infusion wore off by Thursday morning, just in time for me to feel crummy for my two-month post-op check-in with my surgeon. Good news is that the incisions are healing the way they're supposed to. I'm now scheduled for a follow up mammogram in May (how time flies). She's also got me coming in in January for a repeat ultrasound on my non-operated-on breast. They'd found a cyst there back in June when I went in for an MRI on the cancerous lump, and while a biopsy came back clean, we need to do a follow up. Okey dokey. Always something fun to think about. I'm not especially concerned about it, especially considering I'm already getting dosed.

By the time I got home Thursday, I was weary and cranky and not very eager to eat or drink, which, of course, isn't good. Basically kept myself going on the minimum and sleeping till my SO came over for the weekend Friday night. Which was just what I needed. He gave me enough space to recover but also offered the incentive to increase the caloric intake, toss on the headscarf, head out to the park and enjoy the nice weather. By yesterday (Labor Day), I was perky enough to get out and do some exploring. Yay!

Did have one somewhat tough experience: heading to our local bar/restaurant. We're usually there a couple times a month for dinner and/or drinks at the bar, to the point where we've gotten cordial with some of the staff and managers. Nobody there knew anything about my surgery or chemo -- how do you fit that into the conversation? "I'll have a bottle of the Rubaeus and by the way, I just got a tumor yanked out of my boob." No. But I also didn't want to avoid the place for the next six months until my hair grows back. So... when my SO suggested going there, I said okay. Have to make the plunge sometime.

After we'd eaten our dinner, the friendliest of the bartenders sidled up and asked me directly, "Are you doing chemo?" Now that's a question, right? I appreciate the directness, and it didn't bother me, but seriously? What if the answer is no? You've basically just told someone she looks really, really sick. Or like a ridiculous parody of Stevie Van Zandt.

I'm not doing chemo.
I just like wearing a do rag on my head in 90 degree heat.

So what else am I going to say but yeah, I'm doing chemo. And follow up with the elevator speech version of the story - "they pulled out the tumor, clean margins, no sign it traveled anywhere else, this is all a big precaution, I'm not worried so you shouldn't be, either." All while she's giving me those big sad concerned deer mama eyes.

Everything ended up okay, but it gave me yet another reason to think that not talking about this so much is a good thing. People understandably jump to bad places in their mind when they hear chemo (and cancer, for that matter), and the reaction got me wondering if I'm not taking the situation seriously enough. Should I be worrying more? Should I be preparing myself for bad things? I don't like living that way, and I know it's my decision how to manage myself, but I can't help wondering from time to time. Guess I just have to find a way to re-balance my viewpoint after it gets a little shake like that.

Incidentally, today's check-in with the oncologist went well. Numbers were at the expected levels (same as after week one of the last cycle) but the doc said she was pleasantly surprised at how I was doing. Good stuff.