Keeping up the good work

Headline: I’m done with chemo

Subhead: Outlook promising,  Antibodies to continue

–———————————————-

I had another CT scan last Friday and we met with Dr. M this past Monday to get the results. M once again showed us two screen shots he’d printed out: one from my last scan in August and one from last Friday. I’m not posting the photo here because he drew on the print out and it’s hard to make out the differences. (And because I’m traveling today and forgot to take a pic of the pics.) Suffice it to say, the liver tumors shrunk even more over the past two months. My blood work is great and M was “very pleased” with the scan. This is pretty strong language from the good doctor, so we’re very pleased, too. When he left the office after our consult (in a somewhat disheveled rush, with papers akimbo, as is his way), he urged me to “keep up the good work.”

Of course, this begs the question, what comes next?

In the short term, as I’ve explained before, I’ll continue to receive Herceptin and Perjeta infusions every 3 weeks. Perhaps for the rest of my life. They also will collect blood samples during those visits, and I’ll be back to getting CT scans every 3 months.

Three is the magic number.

A quick accounting of my CT scanning experiences leads me to estimate that I’ve had around 20-25 scans since 2011. Damn. That’s a lot of radiation.

She-Hulk_new spiritsuperhero
The end result of too much radiation? Stay tuned!

Anyway, back to my update. Dr. M explained that we’ll proceed as noted above until there’s evidence of tumor growth or any other indications that the cancer is rearing its ugly, receptor-riddled head. I asked if they would return to Taxol in that situation, since I had such a good response to it. He didn’t directly answer me, but explained how pleasantly surprised the medical community has been by the THP regimen, because it’s been effective beyond their expectations.  It could be months or many years before I have any need for chemo again. And by then, who knows what the treatment options might be.

This is encouraging. But it also drove home the reality that I’m one of thousands who are still guinea pigs for this treatment.

Remember, the combination of these three drugs is still very new. It’s only been two years since the landmark Cleopatra study came out. We often hear, and sometimes have to think carefully for our own purposes, about clinical trials. But once a study has gone through phases I-IV and achieved FDA approval, we tend to think that the experiment is complete. That’s not at all the case. Although the THP treatment for HER2+ breast cancer has received all its formal approvals, every individual who uses this combo is another “n” in a longer study of the treatment’s effectiveness.*

So far, THP’s outcomes look great. Let’s hope my contribution to this experiment is on the extra long side of the “recurrence-free survival” spectrum.

Meanwhile, I have a hair update. The hair on my head is starting to fill in, though it’s still very short. My acupuncturist made a comment this week about me having thick hair.

“How do you know that??!” I asked, too quickly and with great interest.

“I can tell from how your hair is filling in,” she replied.

Hallelujah!! As you’ve likely gathered (ad nauseum), my greatest vanity in this process has been related to my hair. I’m cool with the Ripley-esque look, and have enjoyed hearing friends tell me it makes me look like a bad-ass and Husband saying it makes me look smart. (Which I don’t get, but I know he means it with love. Or maybe he’s seen too many X-Men movies.) And I’ve loved showing off my big dangly earrings. But I’ve definitely been nervous that my once thick and abundant hair would grow back thin and, well, post-menopausal. (Sigh) In short, I’m relieved to get an unbiased opinion that my hair seems to be filling in with its characteristic thickness. For that good fortune, I’m even willing to accept the uncharacteristic proportion of grays.

Another aspect of my hair has been unsettling lately, and that is the loss of facial hair. For the first four months this was great. No more post-menopausal upper lip hair to bleach, no “witch hairs” to pull, no random discoceries in the middle of an important meeting that I have a half-inch hair growing on my neck.

But over the past 3-4 weeks, I’ve been steadily losing eyebrow hairs and eyelashes. I now could count the number of individual hairs I have left around my eyes. I’ve lost all the eyelashes on the inner half of my right upper eyelid. My eyebrows consist of a few steadfast holdouts on either side, but precious few. Every time I wash my face or rub my eyes, another lash or three comes off, usually falling in my eyes and forcing me to rub my eyes furiously, causing a couple more hairs to jump ship. All I can say from this experience is that we have far more eyelashes than I would have guessed, since they fall out like maple leaves in a fall windstorm, yet I still have some left.

This facial hair loss makes me look weird. There’s no getting around it. I’ve never had big eyebrows or thick, luxurious eyelashes, but the absence of my meager allotment makes me feel naked in a way that’s hard to understand until you experience it. I’ve seen plenty of people who, for various reasons, have little or no facial hair. No problem! That’s just what they look like. It’s different to watch your own face transform in this way.

Mascara helps for the eyelashes, but I had to laugh at myself today when I realized I only had half a lid’s worth of lashes to mascarify. I’ve also taken to using eyebrow pencils. This also makes me laugh at myself, because it’s something I once thought I would never do. And it’s hard to find the right eyebrow pencil. I have two different pencils, neither of which is really quite the right shade of brown, and another powdery thing applied with a spongey brush that is a little too dark. It’s really hard to find the right approach…which leads me feeling a little self-conscious at all times. If I scratch my eyebrow, will the eyebrow come off on my finger? Or smear across my forehead? It ain’t easy.

We’ve all seen the ladies whose penciled-in eyebrows are entirely the wrong shade for their complexion, or all cockeyed, or otherwise unnerving in their precision. Hopefully none of those descriptions apply to my eyebrow drawing, but it still looks fake and, therefore, odd to see on my face. But I’m learning some grace and humility, I hope, because drawn on eyebrows are way better than five-random-hair eyebrows. Plus, I need to be able to raise my left eyebrow during conversations. It’s part of my communication tool set.

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*In scientific research, the number of individual samples you have in your study is referred to as “n,” for “number.” This applies across all fields, not just medicine. As a study’s n becomes higher, its results become more likely to be representative of real life, or what’s actually happening. Large studies of breast cancer tend to have huge n’s, in the 10s of thousands to the millions. By contrast, the largest study I could find when I was first researching uterine leiomyosarcoma had a sample size of a couple hundred people.

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Keeping up the good work

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

Poopy Hell Days and Random Acts of Kindness

Feeling Ssssslllllooooooooowwwwww

Today is gray and humid in southern Rhode Island.

The space immediately surrounding me is quiet and slow, notwithstanding the steady weekend stream of cars going past our house.

This is one of those days I’m (regretfully) becoming accustomed to, when I don’t stray far from the couch because I’m just flat out tired. The best description of my status today is slow like honey and heavy with mood.

This is not normal for me. I’m the person that uses every minute of the weekend to get shit done. Laundry, cleaning, catching up on some work stuff I couldn’t get done during the week. You know how it goes. In spite of all the recommendations for bingeworthy tv from friends, it’s hard to make myself watch tv during daylight hours….it just feels wrong. (Although I admit I don’t have this same repulsion about using my computer, as evidenced by this post.)

Other than having a few slow days here and there, though, I’m doing remarkably well. Plus, my liver markers are all going in the right direction, showing a clear response to treatment. (Check out those lovely liver tumor markers, CEA and CA 27-29.)

It’s almost funny sometimes, actually. Often, folks who know what’s happening expect me to look sick. But I don’t, for the most part. Yes, I’m losing my hair like crazy, but you can’t really tell. I still have TONS of hair. More on this in a moment.  Sure, my GI system is in a constant state of disturbance that makes me wish I owned stock in Immodium and Georgia-Pacific. Alright, foods are starting to taste like cardboard. And, of course, I get very easily tired. But I’m not experiencing the worst side effects I had feared, and I don’t “look sick.”**

Now, about all that hair.

In spite of my disproportionate number of genetic mutations, I am blessed with good hair, and lots of it. This is great when I go to the hairdresser and they compliment me, or when I need to use my hair to regulate my temperature on cold days. But as it turns out, having a lot of hair can be pretty annoying when you start losing it. And losing it. And losing it.

The latest indignity is the fact that little hairs keep wafting into my cereal bowl as I eat my breakfast. I think we can all agree that cereal should be a hair-free zone.

This is all to say that I think I’m ready to take the nuclear option and shave my head. Stay tuned.

I’m going to go full on Ripley, which means I might put a trash can on my head, throw some cardboard boxes around my arms and legs, and walk around saying this ( to cancer, in which I am “her”):

**As an aside, it’s worth noting that the whole “you don’t look sick” thing is a big can of worms for a lot of people who suffer chronic illnesses. For now, I’ll note only that sometimes this kindhearted comment can be very frustrating for truly sick people. It’s complicated, and different for everyone, but this perspective might be enlightening.

Feeling Ssssslllllooooooooowwwwww

Oh, My Head

It hurts. Not from a headache or because I knocked it against a short overhang as I stood up.

Not like a hangover, thank god.

It’s more like my hair hurts. Or, rather, my hair follicles hurt. If you’ve ever worn a hat too long or, if you have long hair, left a ponytail in for a long time, you might know what I mean.

Over the past few days I’ve started wearing head scarves, mostly to limit the piles of hair that accumulate around me like I’m Pigpen from Peanuts, just with hair instead of dirt.

I have two lovely head scarves sent by my friend C. One is a purple batik, the other a soft, rayon-y confection that I suspect will feel really good on my bald head when I get there.

By happenstance, C’s package arrived on the same day as a package of head wear I had ordered from the same company. I highly recommend this company, by the way: headcovers.com. The packages arrived with these nice little magnets and pink ribbons. 

So now I have the two scarves from C, a bright red one I bought, and two “snoods,” a decidedly funny name for a soft little slouchy cotton hat. Instead of screaming “I have cancer!” these snoods let off more of an “I’m trying to look hip!” vibe. Small improvement, but I’ll take it.

Another dear C friend brought me to treatment last week and we decided to go a little early so we could check out the wigs at DF’s little store. They’re still between wig fitters, but we looked at their small selection of costume wigs. C bought one of them for me. Which one do you think we went with?


If you guessed pink, you’re right! The long one is too reminiscent of my real hair and the orange one made me look like Wendy of the burger chain. But the pink one! What fun!! I’m excited to wear that little cutie. But probably not until I finish losing this hair, b/c I don’t want to have anything on my head right now if I’m can help it. Those damn follicles.

Oh, My Head

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