Recommended Reading

This piece by one of my favorite science writers, oncologist Siddhartha Mukherjee, is a poignant and insightful look at failed clinical trials.

“The cosmos yields human drugs rarely and begrudgingly,” he writes, “and when a candidate fails to work, it is as if yet another chemical morsel of the universe has been thrown into the Dumpster.”

(Wow)

He then goes on to explain the allure of “post-hoc” analysis, or adjusting the research goals to look for the subset of patients for whom the trial was successful.

I highly recommend it.

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Recommended Reading

Life, the Universe, and Everything

Sometimes in life you get to look back on a choice and recognize that it was a good one. For example, the fact that I decided to buy an Aflac cancer policy in 2009, at the age of 35, two years before I was diagnosed with uterine leiomyosarcoma. Or that I agreed to serve as an interim executive director in 2006 when my friend S. asked me to, launching a career path that I never would have imagined for myself. These are choices that, in hindsight, were both wise and fortunate.

But when you choose to commit yourself to a partner you must make a series of choices about that person. Every year, every month, and every day, you choose to be with them. (At least, that’s how one hopes it would work.)

When I look at the choices I’ve made about Husband, I can see they were good ones, and that I’m wildly fortunate to have had this man by my side, through thick and thin.

It is decidedly difficult to carry on a healthy relationship through cancer. Your interactions change (or don’t), your priorities change (or don’t), your needs change (or don’t)…you get the picture. As much as any relationship takes work, I think the addition of a disease or illness that makes a couple face mortality adds a different layer of challenge. This might be like getting to the 20th level of a video game, only important.

The challenges involved in sustaining healthy relationships during and after cancer is another reason for the growing interest in survivorship research. Being a “survivor” (a term for which I have no affection) entails a lot more than monitoring tumor markers and getting regular scans and sorting out the new normal of your body. Partners and other close family members bear psychological scars and triggers, just as the patients do. Figuring out how to navigate these emotional minefields is a long and ongoing process.

Husband and I have been together for fifteen years, and we’ve been going through this survivorship process for 5+ years now. It’s not been easy, but we’re still doing it. Together. Every day. I don’t know the words to describe the depth of my gratitude for his continuous investment in our relationship. Thank you, R. I love you.

***

And you, gentle reader. I’m also grateful for you, my friends and my family. Husband posted a beautiful Facebook post today on this topic, thanking the many people who have helped us in countless ways. Like Husband, you keep coming back to provide love, care, and assistance whenever we need it, over and over again. Thank you. I love you, too.

***

My motto this year has been “life is strange.” (Indeed, life has been stranger this year than ever, at least in my lifetime, not least because of cancer.) When I tell people my cancer stories and they look at me with that stricken, grievous face we generally offer to people we feel sorry for, I respond by saying, “life is strange.” This is an empirically true statement, of course, but as much as I’m down with empiricism, I’ve taken to using it because it offers me some peace. It occurs to me that this might be my own, non-religious version of the serenity prayer.

There are some things in life we can’t see coming. Some of them are good, or perhaps we make good choices to avert the things that are bad. Some of the things that come at us are bad, or perhaps we make bad choices to avert the things that are good. Sometimes we get lucky. Sometimes we don’t. Any way you cut it, life is strange.

In spite of this strangeness, I have so much to be thankful for. So today I revel in my gratitude. I hope you get a chance to do the same.

xo

Life, the Universe, and Everything

Belated Good News

Clearly, I’m better at sharing bad news more promptly than good news. I apologize to all of you for this, because you deserve to know the good news, too.

So, here it is: It’s been 73 days since I finished chemo treatments. I’ve continued to receive the two antibody infusions every 3 weeks.

As of my last visit on October 30, my blood work was excellent. Specifically, the CA27-29 tumor marker–the one with a value of more than 4,000 on May 8–was down to a value of 1. ONE!!! This is the level of CA27-29 that a normal, non-cancerous person would have. (Not that I’m a “cancerous person,” I hope…but you know what I mean.)

Check out those orange and purple balls! They’re almost off the chart again, but on the low side this time.

In short, this is the optimal outcome from treatment. The regimen worked, allowing me to transition to recovery mode.

And recover, I have!

  • My appetite is back. I’m not eating as much as I was, say, a year ago, but that’s not a bad thing. 😏
  • My sense of taste has returned. I’m now enjoying food again, experiencing the range of flavors that drive my love of food. No more eating cardboard
  • My hair is growing. I was curious about what my post-chemo hair would look like. Well, it looks gray. And black, which is weird, because my hair was never black. It kind of looks like someone used a shaker of powdered sugar over my dark hair. I know this is typically referred to as “salt and pepper,” but this looks different. To me, the gray seems to be a fine covering on top of the dark hair. Someone told me I looked “distinguished.” I think I just look old. (Though I do still love the short hair.)
  • Of course, growing hair and my lack of natural estrogen means that my facial hair is also growing back with a vengeance. It struck me as so odd that I lost most of my facial hair in the month after finishing chemo. But it’s grown back as quickly as I lost it. Now I have to do some serious grooming to keep everything under control: eyebrows, witch hairs, mustache. Sigh. It almost makes me miss my penciled-in eyebrows. Almost.
  • The neuropathy has improved a lot. My hands are recovering faster than my feet, although I still lack dexterity. Anything that involves picking up something heavy from underneath (like rotating our mattress, which I tried to do with Ray the other day) is very difficult, because I can’t muster the control of my fingertips to get under a corner. I’m still taking the gabapentin before I go to bed, and it helps.
  • My fingernails are still wacky. They look like a layer cake, with healthy nail near the cuticle, a no-man’s land of questionable commitment to the nail bed in the middle, and a top layer that is totally unattached to the nail bed. This is part of the complication with picking things up–I’m still afraid I might rip off a nail if I’m not careful. But it’s getting better. My toenails are also wacky, but it’s November…sock season!
  • And, finally, there is my overall well being. The fatigue I had during treatment, and for the first month or so after, is pretty much gone. I’ve been traveling a lot for work since September, and would have every excuse to feel exhausted. But I don’t!

All in all, I’ve been fairly shocked by how quickly I’ve begun to feel better. I’ll leave you with a few pictures, including my Halloween costume from this year. Husband had the great idea for me to dress up as Imperator Furiosa from Mad Max: Fury Road. Why, you ask? Because my hair was *perfect* for the part. Plus, it felt good to be an ass-kicker.

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Belated Good News

Food, Glorious Food!

Just a quick update:

My normal sense of taste is returning. I’m once again starting to taste the range of flavors that makes my impatient palate so happy. And this helps make me feel like me again. 

And my hair is growing. It’s filled in on my head to the point where this looks like a purposeful haircut, which makes me seem very bold and edgy to people who don’t know me. Joke’s on them, but it’s fun. 

My eyebrows, only so recently departed, are growing back in, though I don’t have much more than an eyebrow version of a five o’clock shadow. Still, it’s progress. My eyelashes are still AWOL, and I learned that wearing eyeliner without any eyelashes looks really weird. I won’t do that again. 

Food, Glorious Food!

Sunday Morning Coming Down

Heard from behind another curtain as I wait for my antibody infusion on a gray, rainy day in Boston:

“Am I almost done?”

I include my reenactment of her question in the video below. It dripped with annoyance, exasperation, and disdain for the general situation.

I can’t blame her. It’s Sunday and we’re here, getting various meds pumped through our veins.

Don’t get me wrong, there are clear upsides to doing this on a Sunday. They have so few patients on this day that they funnel four floors’ worth (meaning four different cancer clinics encompassing a whole suite of cancer types) of patients through the 9th floor infusion center. Floor 9 is my normal home base, so it feels fairly typical to me. Except that Nurse M doesn’t work today. Sad face.

But today’s nurse tells me that few patients come in on Sundays, so everything moves fairly quickly. This is good, since I came here today via the Boston airport by way of an early flight out of Pittsburgh, where I was attending a conference. I’ll take a train home when I’m done…assuming I get to my train in time.

It is a good day to sit in a heated chair with a warm blanket, at least.

Sunday Morning Coming Down

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.

Keeping up the good work