Friday, November 17, 2023

This time, baby, I'll be rabbit poops

This is going to be one of those scatological posts.

I remember the principal trainer for my group in Peace Corps, whose name was Prudence—Pru for shorttalking to us about dehydration.

And on a side bar, I would really like an em-dash button on my keyboard. I always have to go googling and copying, because otherwise I just get the double dash, which I don't enjoy the look of, functional as it may be.

So Pru.

For the most part, I quite liked her.

But every once in a while she'd do somethings like try to force our van of tired selves to sing camp-type songs on the road back from a training exercise.

We were all adults in our 20s and 30s, and we wanted to sit quietly, or chat with the person sitting next to us.

We'd been busy all day. We didn't want to sing songs all the way home.

Another time, we had to write an essay or something. Pru wanted us all to sit quietly until everyone finished writing. Not to discuss. Just so she could dismiss us all together.

I asked why we couldn't just leave when we were done.

And she asked me if I was an only child.


But I remember clearly this story she told us, which has stuck in my mind lo these many years.

She started out talking about a long bus trip. 

I was going to say "the thing about buses in Ecuador"but there were many things. 

The most concerning issue was that you took it as a good sign when the brakes squealed, because then at least you knew they were working as you rounded tight curves on steep Andean roads carved just deeply enough into the side of the mountain for one lane of cars each direction.

Sometimes you'd sit and hold your breath as your driver and another met in opposing directions on a tight turn, and had to take turns backing up by inches so they could pass each other.

It was always more comforting to be on the inside of the turn in those situations.

I remember sitting by the window, looking at the 3,000-foot drop we'd plummet down if our driver backed up a wee bit too far.

The drivers always seemed pretty cavalier with the loud music and constant flirting with the girlfriend they brought along and such, but they must've been really, really skilled.

Anyway, the  other thing about these busses was that stopping for a bathroom break was at the whim of the bus driver. I remember begging, pleading with a drive to stop, just for 30 seconds, so I could pee on the side of the road next to the bus.

It's super weird to think of that here. You definitely couldn't do this with the Peter Pan bus on the New Jersey Turnpike.

But I've also never seen livestock or grain sacks on an American bus.

Aanyway, the safest thing to do for a 12-hour bus ride was not to drink water. Or drink a little but also eat salty snacks.

One of my fellow volunteers wound up with a kidney infection. Your body needs to be processing liquid.

So, in Pru's story, being a seasoned bus rider, our trainer had taken this no-water approach, and arrived home utterly exhausted. And then the next day she had these tiny rabbit poops.

Which wasn't surprising to talk about, because we talked about our poop all the time. Because nobody's bowel movements were normal. 

We got all kinds of parasites.

My exquisitely beautiful friend Neeta kept getting worms. The lesson she had to learn more than once was not to buy tripe from the street vendor. 

True fact. 

Me, I got giardia, and because it is a smell you never forget, I was able to correctly identify Jordan's case and insist the pediatrician get him tested.


So back to Pru's story. The lesson of which was that dehydration, particularly at altitude, was dangerous.

And among the symptoms were exhaustion and rabbit poops.

Should this happen, you knew you needed to hydrate.

This was an excellent bit of teaching, at least for me, as it made a big impression and stuck with me way longer than any factual historical information ever has.

And every time that happens to me, I think of Pru.

Which is to say, Pru popped into my mind this morning.

The truth is, I was warned by multiple people that Zofran can make you constipated.

I had a telehealth visit with the oncology NP yesterday, who I really liked when I was talking to her directly. 

Because I'd been quite offended when the nurses reported her saying that it would be highly unusual to be nauseated on anastrozole. As if I couldn't be trusted to report my symptoms.

Or like she was saying I shouldn't be feeling the way I was in fact feeling.

When she repeated that yesterday, it was clearly in a caring manner. Like, they pretty much never have people with nausea to the point of needing medication.

The fact that I was taking Zofran more than once a day was concerning. I'm to message her on Monday about my symptoms to see if we need to change meds.

So, Zofran, she told me, they don't like you on it for long. It can make you constipated.

And I was all, ohh yeah. Checked that box already.

Because it happens to me whenever I travel, I thought I knew constipation. But this is industrial strength.

This particular flavor of constipation is resistant to Smooth Move tea, prune juice, gallons of water, raw carrots, lots of walking, yoga, and hot water with lemon first thing in the morning.

It's making me long for the days of foraging in the woods for poop sticks.

I have to say, though, I'm kind of impressed.

Wednesday, November 15, 2023

Me here at last on the ground/You in mid-air

Dear Mama,

Six months ago tonight, I held your hand for the last time. I kissed your forehead. Smoothed your hair, touched the crease between your eyebrows. I frown in the exact same way. 

Because you were mine, even though your heart was no longer beating, it felt OK to touch you. To hold your hand. To feel your fine, smooth skin.

I knew that once we left, I'd never have this opportunity again. I could talk to you, of course, but not touch you warm and still looking and feeling like my mother.

I saw your body again, twice, but you were far away.


That night, six months ago, Nick and I agreed that if the kids were already asleep when we got home from the hospital, we wouldn't wake them. We'd tell them tomorrow.

And then India heard the car and ran to open the back door.

She saw the bags and said, "WHY ARE YOU CARRYING NANA'S THINGS?"

And then I crumpled. And she crumpled into me.


There's a box of stuff we brought home from the hospital that I've been almost unable to touch.

Your glasses, your weekly planner, medications, things like that. 

There's even a page from an old calendar I'd made for you, a huge photo from our trip to Toronto years ago. I taped it to your wall to cheer you. One of the nice nurses moved it with your stuff and hung it on the wall in the ICU.

I've diminished the pile a little over time, removing things like hospital toiletries. It's the everyday objects like your padded eyeglass case, which you used all the time, that wreck me.

When you went into crisis, the staff had packed everything from your regular room into big plastic hospital bags, and in the 12 or so hours you were in the ICU, there was no reason to unpack anything. There was no time to settle in and look forward.

It made it easier, physically, to collect your things when it was time to go.


When I told one of my yoga friends, who is in his 70s, that I had breast cancer, he said, "It's a blessing your mom isn't here to worry about this."

Which frankly hadn't occurred to me.

But yes. This is one trauma you didn't have to live through.

I can see how it's a blessing. 

It just selfishly doesn't feel like one.


India's taller than me now. 

If you were still here, the kids would do to you what they do to me. They walk up and stand very very close. So I can be reminded of how much taller they are than me.

Now I'm the shortest one in the house. Except Wanda.


Yesterday I went to get my physical. 

The first question the nurse asked as he was updating my chart was, "Is your mother still alive?"

It caught me so off guard, I started to cry. I said no, that you'd died in May.

And he said he was sorry. His mom had died when he was 18, and losing his mom was the worst pain he'd ever been in. She's been gone 24 years, he said, and it still hurts.

We agreed that it hurts so much more than everything else either of us have lived through.

And then, because I'm me, we talked about his country and depression and stigma and his husband. He looked at my birthday and noted that I'm a Leo. Being a Virgo, he always clicks with Leos.

I told him you were a Virgo, and agreed.

He and his husband will probably end up invited to a Christmas dinner, if we ever host one again.

You know this. 

When he was putting all the little sticky things on for my EKG he said, "Wow! You're in amazing shape!"

I didn't tell him that I was the fittest person you knew.


We're going to England for Christmas. I told Nick and the kids in May that I wasn't doing Christmas this year. We have to go away.

I remember you saying that you never needed to worry, because your mom did all your worrying for you.

And I've never had to make things beautiful, because you did all of that for me. 

All the mantles with candles and pine cones and sparkles. You put everything together exquisitely. It was fancy but homey.

I loved it.

You wrapped packages perfectly. Not just with the paper crisp and even and the ends nicely folded under. Also with bows and ribbons and lovely little details.

They were just sumptuous and pretty.

I know how time works, and I know the problem with time is that it just takes so long. 

But being so familiar with grief, I know that at some point I'll be willing to pull out the wreaths you made, and decorate the tree with all the ornaments from childhood.

I'll take out your ribbon bag and go through your collection of wrapping paper.

Maybe I'll even make sticky buns.

But not this year.


I've been wearing some of your clothes.

Not your sweaters. That drawer still smells like you. I don't want that to dissipate.

When Maude was here, we went through your shoes, and she took some. She's been wearing your San Miguel de Allende cocktail combat boots. This brings both of us tremendous joy. 

I found an old bottle of Arpege on your dresser. It smells like the you of my childhood. Or actually, the you of my life until Dad died.

I walk around your rooms, opening your closets and drawers, telling you I miss you. I miss you I miss you I miss you. 

I stay until it hurts. Sometimes this is a minute, sometimes it's half an hour.

I'm slowly removing and giving away unsentimental clothing and objects.

You know, I took your creativity and sense of humor for granted. There are reminders on every wall, every door, really, everywhere.

You taped the kids' art to your walls. You used closet doors as inspiration boards.

New Yorker poetry and cartoons are sprinkled in.They're beautiful and funny in turn.

I wish we'd had more time.


At some point on the afternoon of your last day, though we didn't yet know it was your last day, it became apparent that you were never coming home. Even before you and I had the conversation where you said enough.

My friend Alexa, who didn't know how extreme the situation was, texted me to say that you were surrounded by loved ones. It was very crowded in your room.

They were all waiting for you.


I made the card above for your service, which was truly lovely. I'll write about it.

The back of the card has the lyrics for You Are My Sunshine.

On the day of the service, India looked at the cards closely, and pointed into your hair and said, "Mama! Look!"

I'd put your photo on a template, and missed the words Sample Text because your hair was so dark.

I told her Nana would think it was funny. Which is true. You would.

It's been six months, and I miss you. I love you and I miss you all the time. I just miss you.



Monday, November 13, 2023

Will it ever stop? Yo, I don't know!

I think, on the whole, that I have a pretty good fucking attitude.

I have my low moments, for sure.

Nick called earlier to say hi, and I'd just been upstairs in my mom's room. And so while I'd been sending him breezy texts, the moment he caught me, I was crying.

The thing is, I know I'm crying for me. For my kids. My mama, she's fine. It's those of us left behind who hurt.

So once I stopped taking Anastrozole last week, my life improved day by day.

By Saturday morning I was feeling good enough to put on this superhero outfit and head to a neighbor's for brunch in honer of a mom from our school who moved away years ago.

Before that I nipped over to the farmer's market, and I got the last Swiss chard.

The guy selling bread complimented me on my jacket, which I got on Facebook Marketplace. That place is a wonder. 

I don't even particularly like Swiss chard. It's just supposed to be really fucking good for you.

And I have a high tolerance for ingesting stuff that's good for you. Like, I can make myself eat or drink pretty much anything if I have to.

Anything not animal, I mean. Like, no blood pudding or tongue or calf heart or what-have-you. Although do those even fall in the category of good for you?

So last night I sauteed the Swiss chard, and Nick tried some, because he's trying to say yes to vegetables even though on the whole they make him want to burn the house down. He was like, "It tastes like not very much of anything."

I ate a whole bowl of it even though I totally agreed. 

He said, "Maybe in a smoothie?" Which reminded me of why I make the smoothies.

So now I have to go to the post office, and honestly, our nearest post office is staffed by one of the meanest humans around.

In the spring I was trying to do a return of the Fleabag jumpsuit that I'd bought for my high school reunion, but the size was wrong. So I wanted to pop it in the mail back to the UK, until I realized that mailing parcels to England costs a million dollars. 

Anyway, I will not bore you with the details, but the woman behind the counter was so incredibly mean. And then the shipping cost was crazy.

So after she told me the cost, I said, "I'm going to take this over to UPS. Where they're nice." And then I told her the actual definition of a word she'd been using loudly, repeatedly, and incorrectly.

I can't even remember it now. 

Did I need to do this? Of course not. But at the time, it felt necessary.

I don't care how smart you are or aren't, and I keep my mouth shut when people use words incorrectly. 

Unless you'are a giant strobelight bitchfaced bitch on wheels to me, apparently.

So I walked down the street to UPS and asked if it would cost a million dollars to mail something to the UK.

The guy laughed and was like, "Maybe?"

I said I'd just been at the Post Office up the street to mail it and the woman in there was so mean.

Another customer turned from the other counter and said, "Oh my god! That woman is so fucking mean!"

She had her own whole story. I've repeated this and multiple people in the neighborhood have agreed. Apparently, it is known.

Anyway, the UPS cost was prohibitive--like, more than the item had cost in the first place.

So now I know not to order from England. I was used to Boden, where you return it for free in the US.

Why why why is it so expensive to send stuff to the UK?

I think I'll post it on Marketplace.

In any case, I have to go. Even without the mean lady, the Post Office is one of my impossible tasks.

I tell people not to leave stuff at my house, because it will take me eighty-five years to mail it.

Oh my gosh. And I now! 

Now I have been instructed to restart Anastrozole, but they're also calling in a prescription for anti-nausea medication, because I told them I was scared to take it. 

I cannot handle the nausea. I just can't.

The nurse told me that the nurse practitioner said that nausea was a very unlikely side effect of Anastrozole, but they're happy to give me Zofran. But to be mindful if I'm taking it regularly.

Apparently Zofran can make you constipated. Several friends told me this.

But between nausea and constipation? No contest. 

(And they're welcome to tell me that it's a very rare side effect. OK. It's my very rare side effect.)

In fact, I don't think I'd choose nausea over any other kind of discomfort. I mean, certainly over like losing a limb or something.

But otherwise, I think it's top of my list of terrible bodily feelings.

Anyway, that's me and my great fucking attitude.

How are you today?

Wednesday, November 08, 2023

Turn right at the Pope

That's what they said when I checked in for surgery. 

Go down the hall and turn right at the Pope. 

(Also, the dog has nothing to do with anything. I just think she looks really cute when she floofs her ears out.)

Anyway, if I turn into a deranged little old lady, you'll see me walking down the street muttering things like, "Anal sphincter." and "Turn right at the Pope." 

Actually, what am I waiting for?

Anyway, so this anastrozole journey has been a little piece of hell.

Nick and I were out on Sunday morning, and I suddenly had such tremendous nausea that we had to go home. It built and built until all I could do was lie in bed until it was time to go to sleep. With my bedside fan blasting on me, because good gracious, I could've roasted a chicken with my body heat.


The same thing happened Monday. The morning was OK, and then by noon I started feeling bad, and by afternoon I was back in bed, absolutely walloped.

I'd somehow forgotten how terrible the early months of pregnancy were, and how I walked around like this all the time.

Isn't that weird? You're pregnant, and you feel like absolute crap, but you're also not yet telling anyone in case it doesn't work out.

So you're just trying to act natural when you want to throw up and/or sleep all the time and none of your clothes fit and your hormones are bananas. 

Anyway, the other day I was like, I'm not even getting a baby out of this.

But back to the issue at hand.

Since the oncologist had told me there were several options for these medications, I messaged the nurse to tell her what was going on, and asked if I could switch.

She called immediately for details, which I provided. I also told her that friends who've had breast cancer suggested an anti-nausea medication, as well as a medication that helps with hot flashes and joint pain. I said I could go whichever way they thought.

She said she'd talk to the NP and the doctor and get back to me.

I figured they'd be like, sure, no problem, we'll switch you or add other meds and call your pharmacy.

She replied saying the NP said that since I hadn't yet been taking the pills a week, it would be highly unusual to have these side effects already. She asked if I had a temperature. I should test for Covid and flu.

Which got my hackles all up. I AM highly unusual.

I took my temperature, which, as expected, was fine. I took a Covid test. Also negative. 

I reported both of these facts. I told them I did not have the flu. And that when I start a new medication, I get all of the wretched side effects, and I get them sooner than I'm told should be possible.

I also told her that I have a high pain tolerance, but no tolerance for nausea. 

(I mean, I wasn't asking for opioids or gold nuggets. I wanted the nausea to stop.)

So. In my reply, I proposed taking a couple days off and seeing how I felt.

What I didn't say was there was absolutely no way I was going to continue taking a pill that was making me so nauseated I couldn't eat or function.

She replied said that was reasonable, and suggested we check in on Monday.

I've still got nausea, but it's diminishing. Same with the hot flashes and joint pain.

Today my friend Kris told me that in France when you're pregnant they give you a suppository for nausea that works amazingly.

She was like, "You have to stick it in your butt, but it works great."

And I was all, "Honestly, I'd put just about anything in my butt if it meant getting rid of this nausea." And then I was like, "Well, no. You know I wouldn't."

But then I started thinking about what I'd be willing to do. Kind of like a terrible one-person game of Would You Rather?

And now I'm like, I should see if Nicole is still in Paris and if you can get anti-nausea suppositories over the counter.

Or maybe that would be under the counter?

Sunday, November 05, 2023

Greetings from the pit of despair

Four days ago, I started taking anastrazole, an aromatase inhibitor.

Totally different AI than is all over the news.

I feel like aromatase sounds like a police weapon. Like, "We aromatased him. He's still armed and violent, but now he smells like warm vanilla and amber."

Anyway, the oncologist had told me that the side effects of these drugs, which block estrogen so that any possible little breast cancer buddies have nothing to eat, are hot flashes, muscle and joint pain, and osteoporosis—although you get an infusion every six months to help with your bones.

I was like, oh, it'll be fine. I had all the hot flashes, so if I have a few more, they won't be that bad. And my hips already hurt, so I have that covered.

And I asked what I could do for those. (Like maybe was there a joint pain infusion, too?)

She said, "Exercise, especially yoga, is really helpful."

Oh. Yoga. I should try that.

I sleep with a fan blowing directly on me all the time. And my hips are screaming. Will this improve with time? I have to ask.

And now I have a headache all the time.

I've been thinking that surely I can't have a headache for five years...can I?

So I was kind of primed to fall into a pit of despair yesterday when I started reading in depth about invasive ductal carcinoma.

Prior to surgery I wasn't googling—Maude stayed up way too late and did that for me one night. She gave me the highlights of invasive lobular carcinoma.

I didn't know what lobules were before I was diagnosed. They're the glands that produce milk, and then the ducts carry the milk to the nipple.

It's the second most common kind of breast cancer. The most common kind is invasive ductal carcinoma.

When the breast surgeon drew the picture of the breasts to explain, the lobules looked kind of like broccoli. I had cancer in my broccoli.

So I knew that it was the second most common kind, and I knew from Maude that I was super duper lucky that the radiologist caught it so early. Because this kind grows in a linear sort of way, whereas the ductal kind causes a lump.

So this cancer of the broccoli is typically not caught until it's quite advanced and palpable.

Lucky lucky lucky.

Yesterday I started googling ILC and radiation to see what I could find.

Basically, thought it's the second most common kind, it hasn't been all that extensively researched. So when doctors are telling me they don't know the best thing to do, they really fucking don't know the best thing to do.

Also, it's more likely to recur than ductal. Typically years out, but sometimes sooner than five years. So maybe in a couple years or maybe in a lot. Also, this kind has more places it likes to go.

Because of it's particular characteristics, including being fed by estrogen and progesterone, it's well treated with endocrine therapy like AI. 

But! This kind also likes to become resistant to these therapies.

Fuckity fuck and more fuck.

This feels the opposite of lucky.

Why can't I be a normie?

So yesterday my OK/Terrible scale tipped all the way past terrible into a viscous pool of abject hopelessness.

I sat around looking at yoga clothing on my phone and trying to breathe deeply.

But the weird thing is, I'm well trained to look for the funny when things feel very bleak.

I think it must be training. Or maybe it's genetic.

I can't find the post, but somewhere in my archives is a story about visiting my dad in the hospital several weeks after a suicide attempt.

He'd been intubated for a while, then they made a hole in his throat for him to breathe, because they didn't know if his trachea had been crushed, and wouldn't know until the swelling subsided.

When he started talking again, it was in a whisper.

At one point, he had a roommate who only spoke Spanish. And he was waiting for the translator to come to help him communicate with the doctor.

I asked my dad if he wouldn't like to just translate for the guy. He shook his head.

And he whispered, "He's crazy."

This is just how it is.

There are always going to be funny things. Like, in an hour, the time changes. 

Sunday morning I'm going walking with a friend. She texted to confirm. "9 am? And remember, the clocks change tonight."

I thought about texting back that 9:00 would be 8:00, but then I didn't want to be confusing. And actually, the new 9:00 is actually 10:00.

This is the week I drive Nick particularly crazy.

So there's shit like this to fixate on, because the world still moves forward.

But the truth is also that it's very, very scary to think about. I think about pain, possible treatments and loss of function, and actual life or death.

I know that even when things are truly, brutally awful, I still more forward, one foot in front of the other. Even doing silly walks. It's just who I am.

So I know I can do hard things.

But why do I keep having to?

Wednesday, November 01, 2023

And when you're 15 feeling like there's nothing to figure out, well

The Oncotype results came back earlier than expected!

My score out of 100 is 15.

The medical oncologist called to tell me, and I could hear the smile in her voice. A score under 25, she'd said, would mean no chemo. So no chemo!

Happy happy dance!

My gosh, I needed this good news!

So then I spoke with my radiation oncologist, who said, yes, great news that my score, being under 18, does not automatically mean radiation! 

But we still might want to do radiation.


She reminded me that it's a grey area, where there isn't much data. It's not clear what would be best.

Basically, it's up to me how to proceed.

Up. To. Me.

I decide? (ME??)

This gave me the same feeling I had when the midwife asked Nick if he'd like to catch the baby.

And I was all, "No! What does he know? I want someone who knows what they're doing to catch my baby!"

I mean, this was the man they'd recently sent to stand up near my head because he made fun of me for pooping on the delivery table. 

They were all, "You don't get to stand down here anymore."

I told this to Leigh today when we spoke about the results and how I need to decide what I am going to do. She loves math and statistics, so I texted her the numbers that my doctor went through with me.

My chance of recurrence is 5–10%
Radiation reduces this to 2–5%


Possibility of damage to heart is 1% or less
Possibility of damage to lungs is 1

Also, radiation will shrink and harden the implant on that side, although to what extent varies person to person. And the surrounding tissue will tighten, possibly to an uncomfortable or painful extent. Or not.

This could mean more surgery. Or not.

It can also cause lymphedema and cording. This happened to a good friend of mine.

But might not happen to me. Bodies react differently.

So when I told Leigh the parameters for the Oncotype test, and how it's for my specific and very common type of breast cancer, she totally understood and tried to explain how they'd use data sets and modeling to be able to predict outcomes with a high degree of accuracy. You could hear the enthusiasm in her voice.

Then we talked about how 5% doesn't seem high...but 10% does.

So then I said, "But there's also this 1% chance of heart damage. So if you minus the 1 from the 510, it's more like 49..."

And she said, "Let me stop you there. Because that is definitely not how the numbers work."


"Yeah. You don't get to stand down there anymore."

Good thing I'm a writer and not a nuclear scientist.