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.”

https://giphy.com/embed/glwlvYIRPivXW

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

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Poopy Hell Days and Random Acts of Kindness

Weird Things About Being Bald

In no particular order, and with the knowledge that I will likely edit this over time…

  • My hats are too big. (I had A LOT of hair)
  • I’ve not completely shaven my head, so my scalp feels like velcro
  • I can’t stop running my hands over my head
  • My shadow is a little scary
  • The simultaneous sensations of feeling my velcro head with my hand and feeling my cool hand on my scalp are totally bizarre
  • If I wrap a scarf around my head just so, I look like Professor Quirrell from Harry Potter and the Sorcerer’s Stone

  • Someone told me I looked like Natalie Portman when she shaved her head, which made up for the Professor Quirrell thing
  • I’m now susceptible to mosquito bites on my scalp
  • I started sleeping on a satin pillowcase to alleviate the velcro effect while I sleep. (BTW, I’ve learned that fashionable ladies do this to keep wrinkles at bay. You know how smushed up your face gets while you sleep. Warning: this can take you down a crazy Internet rabbit hole. Some people will go to very great lengths to avoid sleep wrinkles.)
  • There is an odd cooling sensation immediately after removing a scarf that’s been wrapped around my head for a while
  • I need to buy a wig!
  • I pay much more attention to random people’s hair–its color, texture, quantity, behavior. I think this might be worth a separate post…

Expert bald people: what am I missing?

 

Weird Things About Being Bald

Ripley, Reporting for Duty

We did it! I finally bit the bullet and decided to get rid of my hair yesterday. Husband captured the whole event for posterity and C did most of the shaving. And here I am.

Needless to say, this is pretty weird. But I’m not sad. I’ve actually found this entire process of cutting and shaving my hair pretty empowering, to be honest. I’ve always had long hair. Always. And I probably never would have had the nerve to cut my hair short without this physiological kick in the pants…much less SHAVE my head.

Turns out, I have a pretty decent head. No weird lumps, and my ears don’t stick out or make me look like an alien. Along the path to baldness yesterday, we stopped at Mohawk Boulevard, Kewpie Doll Terrace, and Ed Grimley Avenue. I have to admit that I really loved Mohawk Blvd. If I were in a different line of work I would seriously consider hanging out there for a while.

White walls.
Lovin’ the mohawk.
The Ed Grimley. Completely mental, don’t ya know?!
The Kewpie Doll. This one took some serious product.
The Kid?
Husband lent me his dreads for a few minutes.
The doting husband…who can’t stop touching my head.
Ripley, Reporting for Duty

Hair Today, Gone Tomorrow

One of the major and most well known side effects of chemotherapy is hair loss. It’s important to note that not every type of chemo causes total hair loss, and even when it’s expected, individual responses vary.

You may wonder why hair loss is so common with chemotherapy. It’s pretty simple, really. These drugs target fast-growing cells, but cancer cells aren’t the only ones that grow quickly in our bodies. Hair follicles, especially, grow very fast, thereby attracting the attention of the chemo drugs.

The informational website breastcancer.org offers a handy summary of the typical hair loss responses from a few common chemotherapies used for breast cancer.

As you can see, Taxol (my treatment), is the jackpot of hair loss, generally causing complete loss of hair all over the body. Yippee.

I have long hair. Thick hair. A lot of it. I’m one of those people who is often described by my hair. In fact, I’ve long argued that my long brown hair is the reason people often tell me I look “just like” their cousin/sister/aunt/best friend/brother’s ex-girlfriend, etc. People see a woman with long brown hair and glasses, and they see nothing else. I even gave this a name many years ago: “long brown haired woman syndrome.”

It is noteworthy, then, that I am going to lose this defining attribute as part of treatment, even if only for a little while. This is, of course, one of the most challenging outward aspects of chemotherapy for many people, especially women. It shouldn’t be too surprising that there is research underway to try to counteract this psychologically significant side effect. You may have heard of the cooling head caps that are said to minimize hair loss during chemo treatment, or perhaps the development of topical agents using nanoparticles that might reduce the accumulation of chemo drugs in hair follicles. That’s all well and good, but I won’t be using any of those things. I’m going whole hog, baby.

Don’t get me wrong: I know I’m going to freak out when I start losing my hair. I decided that it would be least traumatic for me to take some control of the situation by getting my hair cut short. I have this image of standing in the shower and sobbing as handfuls of hair come out of my head. This is the worst case scenario for me, and I want to avoid it. At least I can start by making sure that only small handfuls of hair come out. Plus, this allows me to try out a short haircut in a very low pressure way (I’ll probably only have it for a couple more weeks) and then donate the remainder.

This brings me to my Hair Loss Plan, or HLP.

HLP Step 1: take photo of self with long hair. Note length, texture, color and current status of brown to gray ratio. I think I’d give myself a B:G of 20:1 overall, with a 2:1 ratio over my forehead. I’m tracking that B:G ratio (sort of) for two reasons: wig makers don’t want hair with more than 5% grays (whew! Just made the cut), and I’m curious about how things will look when my hair grows back in a few months from now.

HLP Step 2: ask friend and awesome hairstylist to give me a short haircut. Pause while she squeals with glee. (No, not really. She was appropriately heartbroken, but you know how it goes with people who cut hair. Hairstylists gonna cut, just like surgeons.)

HLP Step 3: look at photos of short hairstyles to try to find something that…maybe?…will look good on me. Let’s pause for a moment to note that I have never had short hair in my life. Gulp. I have absolutely no idea what short hair will look like on me. I decided to shoot for something like this Michelle Williams look. But will my hair even do that??

HLP Step 4: down a couple of shots
Just kidding. No drinking for me right now. But if you want to get yourself one before proceeding, please go ahead.

HLP REAL Step 4: go for the haircut. Listen to friend’s expert opinion on short hair, including the fact that thin blonde hair is not likely to respond like thick brown hair. Hold breath. Marvel at the sheer quantity of hair that has been removed from your head.

That’s all my hair!
OMG!!
This really happened!

HLP Step 5: look in mirror. Pick jaw up from floor. Breathe big sigh of relief that I don’t look like a circus clown. In fact, as Mom pointed out, maybe I sort of look like Rachel Maddow.

Hmmm. Am I now afflicted with short brown haired woman syndrome?

 

HLP Step 6: order a scalp prosthetic
In one of our earlier meetings with Dr. M in May, he gave me a prescription for a “scalp prosthetic,” or what we normal people would call a wig. I will use this prescription, not least because wigs can be very expensive, and this will reduce the cost significantly. But I don’t expect to wear a wig very often. As my mom pointed out, wigs are hot, and even though this has been an atypically cool and rainy spring for southern New England, summer will arrive eventually.

HLP Step 7: wait for the inevitable.

So that’s the HLP. Depending on how I’m feeling, there may be a step 8, which could be “do your best Telly Savalas impression with a rousing rendition of ‘Who Loves Ya Baby?'” or “find some Star Trek: The Next Generation togs and dress up like Captain Picard.”

 

Image result for captain picard meme
This is what I might look like as Captain Picard preparing to whoop on cancer.

Or, you know, just wrap up my head and wait to see what happens on the other side of this madness.

Hair Today, Gone Tomorrow