Gettin’ Wiggy Wit It


I went with my friend C to try on wigs during my DF visit a couple weeks ago. I wanted to get a wig I could wear to work events over the next few months as my hair grows in. I’m increasingly comfortable going without any sort of head covering, but there are times when I want to be able to blend in without anyone asking any questions. C came with an ulterior motive: finding a wig that could also serve my Halloween purposes, since we both love the holiday.

I posted these pics on Facebook, but neglected you, dear readers! My bad.

First off, here’s me, au naturel, on the way up to Boston:

The wig fitter was very accommodating, even though she struggled to find something that fit the bill. I told her I was looking for a dark brown wig, short to medium-length. C took pictures along the way, but we agreed the very first wig was NOT worth a photo. I can see how people really get into wigs, though, after having the chance to try on all these different looks. So here you go, a selection of the good, the bad, and the ugly.

I like to call this one the “TR” because I thought it made me look remarkably like my friend TR. I liked it, but it would be weird to steal my friend’s look.
“The Flip.” Meh. It’s ok, but nothing special. The bangs made me crazy.
The “No Thank You.” Who would pay $300 for this??
The “Touch of Color.” Again, meh. Magenta-heads are said to have more fun, though.
The “Ellen Barkin.” I was trying to channel her cool, sultry look. No dice, but it was still fun.

 

The “First Grade Teacher.” (Meaning no disrespect to my readers who are first grade teachers, but this reminded me a lot of one of my first grade teachers: respectable, in control, but not very exciting.)
The “Richard Simmons.” Need I say more?
I called this the “Old Lady VaVaVoom” when I posted on Facebook, but I’ve since decided to call it the “Mother of Dragons,” in honor of Daenerys Stormborn of the Game of Thrones series.

I felt like a bad ass in the Mother of Dragons wig. It’s hard to tell in the photo, but it had a hint of lavender with the silver color, as well as black at the roots. I loved this wig. It definitely satisfied C’s Halloween objective, but it didn’t fit in with my work objective very well.

Finally, I picked the winner. Nothing fancy, but it felt most like me (without all the grays!). It’s much straighter than my real hair, and a different color, but C and I agreed that this one looked most like real hair. It has a shine and movement that looks natural.

After all of this excitement, it was on to bloodwork and then infusion for chemo #11. Thanks for such a fun day, C. 🙂

Look at that smile! This lady can make just about anything fun.
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Gettin’ Wiggy Wit It

Seriously Snarky

Consider that headline a warning.

My friend J took me to chemo last week and discovered that the DF gift shop’s front display was a bunch of useless stuff celebrating beach life. First off, yes, even cancer centers have gift shops. Second, why on Earth are they selling beach life tsotchkes?

Sure, it’s late July. I suppose this is the time when normal gift shops are pushing these items hard, and even starting to mark them down before the seasonal market floats away like a summer breeze.

But it struck both of us as a little off for a cancer center gift shop. So we decided to edit the cute sayings on these signs and beer cozies to make them more subject appropriate.

I offer you the original products and our reworked versions.

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Best weekend ever…Wasn’t admitted

Best weekend ever…No diarrhea!

Or, instead of “good times and tan lines,” how about “Fluorescent lights and IV bags”?


Heaven is a little closer…when you have cancer

If I can’t wear a surgical mask, I’m not going

Life needs less chemotherapy and radiation

Herceptin Sweet Herceptin

And my favorite:


A good day at the cancer center ends with…leaving

Thanks for the giggles, J.

***

In other news, that was treatment #12. Only 3 to go!

My numbers continue to decline, meaning that I’m in the normal range for most categories. The liver tumor markers are still a little bit elevated, but they’ve come down so much that we can only be thrilled by these numbers.

The chemotherapy induced peripheral neuropathy has started to become more consistent on my left thumb and index finger. It’s not bad at this point, and is generally isolated to my fingertips and toes. I have numbness is most of my finger tips at this point, on both hands, and occasional tingly sensations in my fingertips or a sort of electrical zap through my (left) hand. Sometimes the numbness in these fingers makes it a little difficult to do normal things like wash dishes. It’s especially hard to maintain a grip on wet dishes, but I’ve not yet broken anything. This particular side effect can get very painful and debilitating for some people, and it’s often the reason people stop their chemotherapy treatments early. With three weeks to go, I’m hoping I’ll be done with chemo before this gets too bad.

Nurse M told me recently that neuropathy symptoms typically subside fairly soon after chemo treatments stop. Fingers crossed.

Seriously Snarky

Poopy Hell Days and Random Acts of Kindness

Today is one of those days when cancer sucks.

I just had my eleventh chemo treatment this week, which went fine, as I reported yesterday. I am tired at the end of treatment days, but not in a world-weary sort of way, just because I’ve been wrapped up with cancer treatment for a roughly 10-12 hour period, between travel and actual Dana Farber activities. In short, I wasn’t especially tired yesterday, maybe just a little bit more than average after-treatment tired.

I decided last night that I would go to the beach today. It’s been hot and humid the past couple of weeks, and today seemed like the perfect day for me to finally get in some private beach time. I slept in, had breakfast, then packed up my beach bag to include all the things I might want: my journal and a pen, my tunes, a book, a banana smoothie, etc. It takes a while to adequately prep a beach bag, in my experience. I was also stalling a bit to be sure I wouldn’t have any unexpected and unstoppable toilet needs before heading to the beach.

Good thing I waited, because this turned out to be one of those endless diarrhea days. I took my initial two Immodium pills and then a third when poopy hell struck again. The third pill is generally the charm, and puts the kibosh on further explosions. I finally seemed to have gotten through this GI attack, so I bid Husband and Dog adieu and headed to a beach near work, thinking I could have access to a private bathroom there should I need it. (The benefits of living near the ocean!) Halfway there, I realized I needed to get to a bathroom ASAP. I also realized that I was not going to the beach today. So I turned around, came home, and ran to the bathroom just in time to avoid further ruining my day.

This wasn’t the end of the world, of course. I sat out on our lawn in a beach chair for a while, but it’s just not the same. I wanted sand between my toes and a swim in the ocean, dammit.

This is what cancer does. It sneaks up on you and ruins your day. Even if you’re trying to head that bitch off at the pass, it still manages to sneak up on you, stick it’s nasty little hyper-dividing tongue out at you, and laugh at your well laid plans.

On the other hand…

Last week I had one of those run-ins with unimaginable kindness that seem uniquely, or at least disproportionately, associated with life as a cancer patient.

I’ve been feeling very anti-social lately because of chemobrain. I find it hard to hang out with many people at once because my brain gets easily overwhelmed by the activity, or sound, or attention, or some combination thereof. Although I truly enjoy myself when I have one or two visitors, planning for the visits is also a bit overwhelming (even though it requires practically no effort on my part). As a result, I’ve not seen many people outside of work lately.

Going to the grocery store or other similarly anonymous places allows me to be around people without having to interact with them. I find this comforting, which is odd for a typically social person like me. I both miss hanging out with people and lack the desire to do so. It’s a frustrating mix.

Last weekend I went to a store where I can walk around and peruse clothes, shoes, and home goods. I found some clothes to try on and took them to the fitting rooms. I had to laugh at a couple of the shirts I chose. These were both black, long-sleeved shirts that looked very elegant on the hanger. I thought they might make good work clothes or night-out clothes (for when I actually have nights out again). Image result for science fiction women baldBut when I tried them on, the juxtaposition of these edgy, black shirts with my bald head was a little too jarring. I felt like a character straight out of a science fiction epic.

Hello, Captain Zarniff. It’s Ular Jaro, back from the seventh moon of Syra 11.

One of the shirts had a back zipper that I couldn’t manage on my own, so I did what women always do in this situation: I went into the shared fitting room space to seek out another shopper who could zip me up. Without thinking about it, I walked my bald head right out into the breach.

Luckily, there was a woman trying on a dress by the full length mirror, and she was happy to oblige. I complimented her dress and she unzipped me again after I’d had a chance to view myself in the big mirror (horrifying!). She was kind enough not to comment. We then went back to our respective fitting rooms.

A few minutes later, when I’d finished trying things on, I opened my stall door just as she did, and it happened that she was in the stall across from mine. She had on a different dress and asked my opinion. We chatted for a moment about the various pros and cons of each dress. Then, hesitating, she asked if I was in treatment. I said yes. She explained that she had had breast cancer some 20 years ago, and is completely healthy. She looked great: in her 60s, she was fit and beautiful with a long mane of healthy hair. (I notice hair a lot more these days.)

She then asked, again, very tentatively, if I would like her to pray for me. “I’m on the prayer team at my church,” she explained. I accepted her kind offer. Although I’m not the least bit religious, I will happily receive the love and good thoughts of any person who wishes to share them, via whatever process they choose.

Here came the weird part. She said, “Ok, then come on in to my fitting room.”

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via GIPHY

She didn’t seem like someone who would try to stab me with a pen knife, so I obliged. Don’t get me wrong, this felt exceedingly odd. But…she seemed completely sincere and strange things can happen when you tell people you have cancer.

She mostly closed the stall door, leaving it open just a crack, and then explained, about a foot away from me in this tiny fluorescent lit space, that many people had prayed for her when she had cancer, and she believes it made all the difference for her. She was never sick during treatment, she didn’t lose her hair, and she’s been healthy for more than twenty years. She was convinced that prayer saved her, and she wanted to extend the favor. She said, “I don’t know if you’re religious,” as part of her explanation, to which I responded, “No, I’m not. Not in the least.” Still, she kept going, but in a very respectful way.

She was halting in her approach, presumably because this was an awkward encounter and she was trying to make it as comfortable as possible. She put her hands on my shoulders, bowed her head, and began to pray. It went something like this:

“Lord, please watch over this woman.” She paused. “Protect her…our sister…” and then she looked up at me and asked, “what’s your name?”

“Sunshine,” I answered. She smiled, quickly, and then bowed her head again.

“…our sister, Sunshine, and keep her well…and let her get through this treatment without pain or sickness…”

She went on in this way, but to be honest, I didn’t hear much of it. I was completely overwhelmed by the pure intensity of what this stranger was offering me.

She continued, “…in Jesus’ name. Amen.”

As she finished, I was sobbing. She didn’t seem to have a tear in her eye. She smiled and wished me the best. I thanked her, still in a haze, wiping my eyes, and left the fitting room.

I didn’t “feel the hand of God” in this interaction or anything like that. I didn’t experience any tingly feelings or a wave of warmth. What I felt was the love of a fellow human who chose to share a random act of kindness with me. THAT is my religion.

And that is the kind of crazy thing that (mostly) balances out the bad days.

Image result for wish you were here beach

Poopy Hell Days and Random Acts of Kindness

Most Importantly…

I completed week 11 of chemo this week!

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Other than chemo brain, hair loss (which you’ve already heard about ad nauseum from me), continued GI issues, taste changes and the beginnings of neuropathy, I’m doing pretty darn well.

I’ve finally accepted that if I eat a very mild diet I can hold off diarrhea most of the time. This means a lot of potatoes, pasta, rice, bananas, and my favorite of late, English muffins. I’m not sticking to a strict BRAT diet, but the mild stuff definitely makes my body happier. When that doesn’t work, there’s always Immodium.

The neuropathy is a relatively new thing. Thankfully, this is very mild at the moment. I started to feel some numbness in my finger tips and toes about a week ago, and Nurse M told me this is a very normal way for neuropathy to start. My nail beds have been intermittently sore for a couple weeks, which is also par for the course. This hasn’t had much of an effect on me yet, other than having to use a utensil, rather than my fingers, to pop the tops of soda cans. I keep my nails very short, which mostly prevents any unintended snags (such as what happens when pulling up a blanket to make the bed) that aggravate the finger/fingernail pain.

Long story short: I’m doing remarkably well for someone who’s had 11 weeks of Taxol. Only four weeks to go!

Thanks for all the love and support, all. I feel it.

 

Most Importantly…

TCBY

Maybe that title made you think of the frozen yogurt company, with their catchy little four-note jingle.

That’s the tune I’m singing for something far less fun than frozen yogurt: PCCI.

Say it with me: Post-chemotherapy cognitive impairment.

AKA, Chemotherapy-associated cognitive impairment (CACI), Chemotherapy-related cognitive impairment (CRCI), AKA chemobrain.

I can’t summarize this any better than Dana Farber’s page on the issue (perhaps because I’m having problems finding words):

Symptoms may include decreased short-term memory, problems finding words, short attention span, and difficulty concentrating and multitasking.

I have EVERY SINGLE ONE of those symptoms. My difficulty concentrating also manifests as a discomfort with crowds–not just major crowds, but even party-sized crowds. It takes great effort to have a conversation right now, and if there are more than a couple people in the conversation, I’m so easily distracted that it becomes uncomfortable and even a little anxiety-producing.

On the up side, I have a really great excuse for being a total flake.

But the whole experience is pretty maddening. I can barely remember conversations that I’ve had hours (and let’s face it, sometimes minutes) afterward. I often find myself saying to people, “I just read, or maybe heard, or had a conversation with someone recently where they said xxx, but I just can’t remember where I heard/read this thing.” And sometimes I’m not even sure if I actually heard/read/had the conversation or if I just imagined it.

The International Cognition and Cancer Task Force reported that “neuropsychological studies have shown cognitive dysfunction in 13-70%” of chemotherapy patients. This wide range, according to the Task Force, is a function of different definitions of cognitive impairment and highly varied approaches toward evaluating the effects.

(Not for nothin’, but perhaps they want to start by finding one single clinical term for this so we’re not stuck with PCCI, CACI, CRCI, and however many other ways people have found to describe chemobrain in the medical literature…)

Interestingly (you know, interesting in one of those completely fucking annoying ways), women may be more susceptible to chemobrain than men, and some types of chemo seem to cause chemobrain more than others. Guess what? Taxol is one of the chemobrain culprits. Yay.

Studies of breast cancer patients have shown that those who reported cognitive impairment actually had changes in the resting states of their brain activity on MRI scans. Generally, these researchers think the brain’s network, the huge collection of neural synergies that characterize normal brain activity, becomes disorganized by chemo, reducing the efficiency of information transfer.

That’s all well and good, but the reality is that chemobrain is very poorly understood in terms of its near and long-term effects. Some people continue to feel these effects up to a year after treatment and 10-20% of patients experience them for many years.

I am desperately hoping that my biological freakishness doesn’t extend to this particular domain.

So, if you haven’t seen me for a while, or if I decline your party invitation, keep this in mind. And please remind me that I already told you this if I start explaining it again. 🙂

TCBY

The Eyes Have It

This hair loss business is so odd. The little hairs on my head keep growing, albeit slowly. I have a fuzzy covering of short hairs. Kind of like a peach, but, ahem, mostly gray. (Maggie, you just may get your wish.)

There is one very odd and noteworthy detail about this hair growth: the dark hairs are growing *much* more slowly than the grays. Can anyone make sense of this?

I still have my eyebrows, and though my eyelashes have thinned, they’re still present. Sure, when I apply mascara I have to wipe half of it off my eyelids, but there are still enough wisps of hair to make this practice meaningful. To me.


This will be week 10 of chemo, so I’m going to chalk this all up as a win.

Oh, and this, too: I met long-lost friends for lunch in Newport last weekend. I got dressed up for the occasion, wearing a long, flowing white dress and a big black hat. I wore red lipstick. As I entered the restaurant a woman who was leaving stopped and said to me, “you look like a celebrity!” (It was Newport, after all, I suppose such a thing would be possible.)

It made me feel like a million bucks, and I’d like to tell you that I gave her a sly smile and said, “maybe I am.”

But anyone who knows me already guessed that I did no such thing. Rather, I thanked her, and said, “oh, I’m just hiding my bald head.”

The Eyes Have It

20th Century Women

I just watched this movie tonight. It stars Annette Bening as the 55 year-old single mother of a teen-aged boy in 1979, trying to figure out how to raise him in a world she’s struggling to understand. She turns to two young women, one a similarly aged teen girl who’s known her son his whole life, and one a 20-something photographer and punk connoisseur, to help the boy learn about the world.

At one point the punk photographer says to him, “Whatever you think your life is going to be like, just know, it’s not going to be anything like that.”

And, in a nutshell, that’s why I loved this movie.

 

20th Century Women