Monday, October 30, 2023

I don't think you're ready for this jelly

I assume at some point they'll seem normal, but right now the breast implants are akin to houseguests.

Like when I have very dear friends come to visit, and we're so close that I'm delighted that they're with us. And we spend tons and tons of time together, and it never gets tiresome.

Nicole was here two weeks, and I miss her so much.

Maude and I have lived together twice, and we can kind of function like extensions of each other. 

But they're not me. They have different needs and preferences. No matter how much we like and enjoy and are comfortable with each other, we're distinct people.

That's still how it is with these little guys.

In my appointment last week, Tammy told me that I could never use a hot compress on my torso again, because the silicone could heat to the point that it burned my tissue from inside, but I wouldn't know it.

Wow.

I told her that makes sense, actually, because now, if I drink cold water, my chest gets cold. And I was wondering if she knew if it would always be like this.

She said this was the first she'd heard someone mention it.

Now I'm wondering if it happens to other people, but they've just never mentioned it to her. Or if I'm just so unusual.

But then! Then it occurred to me that maybe I would have to refrain from getting really hot.

So I asked, "Does this mean I can never get in a sauna again?!"

(SOWna with the SOW pronounced like cow, in case you're wondering.)

And once again she said that nobody had ever asked her that question.

Nick felt the need to tell me that it's not like I get in a sauna every day or like ever, at which point I was able to reply quite smugly that a friend a block away has a sauna and she's invited me to sit in it any time I might like so ha!

Tammy reasoned that sauna would be fine, because your entire body is heating up. With a heating pad, the silicone could get extremely hot and burn you from inside. But in a sauna you'd be too uncomfortable first.

Basically, my spatulas and my boobs truly have a lot in common.

Friday, October 27, 2023

I got 99 problams but a (fake) boob ain't one (or two)

I have all kinds of things to tell you about my new boobs, but first I'd like to share two kinds of good news.

The definitive good news is that I had an appointment with Tammy, the NP I adore in plastic surgery. She pronounced me well healed, and said I could go back to normal life, including sleeping on my side and exercise. But really, to listen to my body.

I said, "Downward dog is OK?"

"Yes. Listen to your body."

"And headstands? Like, not today, but yes?"

"LISTEN TO YOUR BODY."

Nick said he'd encourage me to do this thing that everyone thinks I am not inclined to do.

I was going to go to yoga this morning, but I slept right through it. Look at me listening to my body and not the alarm!

After plastics, we minced on over to medical oncology. Actually, we did the opposite of mince. Because walking those hospital halls, I was reminded that Nick is a clompy walker.

"Are you always this clompy?"

"I'm not clompy."

"You're clomping."

I notice because I used to be a heavy heel strike walker. I still am if I'm not paying attention. 

Anyway, first we met with this very handsome fellow—and by fellow I mean like person doing a fellowship and just some guy. I mean, he was wearing a mask, but so maybe he has a weird mouth or bizarre choices in facial hair, but all other data points indicate handsomeness. And he was wearing this cute wool vest over his button down shirt.

Which reminds me—when we met with the radiation oncologist, one of her fellows was in normal clothes and Nick was all, "Where's your coat?"

And he said, "What?"

And Nick was like, "You know, your doctor coat!"

Nick was just teasing but the guy got a little flustered.

Although maybe he's new to breast surgery and women sitting around with boobs out?

Honestly, the oncology department was the first one that left me clothed the entire time. Now I walk into an exam room and reach to pull off my top.

It's like getting drunk in my 20s.

Anyway, I'd like to mention that all my doctors except my plastic surgeon are women. I quite love this fact.

I definitely wanted a female surgeon. There's a recent study indicating that they have better outcomes. This surprises me zero percent.

But good lord let me get to the point.

Nick and I both really liked the oncologist. She explained things so well and was patient with questions.

And here's what she said. 

First, she didn't feel like she could legitimately argue with insurance for the CT and bone scans, because my risk is so low. She doesn't see a need for them.

Also, with invasive lobular cancer, which is my kind, they do a special stain on the lymph node. The normal stain showed nothing, and then they do this extra special step.

(Who wants to be a normie?)

They didn't used to have this stain, just the regular one. And then this stain was developed, and they started using it for everyone, which led to overtreatment in some cases.

I do know from friends who had cancer decades ago that treatment used to be much more brutal. For example, they used to take out 20 ore more lymph nodes as a matter of course. Which led to lymphedema and I don't know what else.

They now treat more cautiously because they don't want to fuck you up for life if they don't have to.

Please understand that this is not verbatim, just my interpretation.

And the doctor said that the tumor board (with olives and prosciutto!) has representatives from every cancer specialty. These are the big brains at the top of their fields. This is what they do for a living. And none of them believe I'm high risk.

So.

The oncologist said that she is as certain as she can be without Oncotype results that I will not need chemotherapy. 

She explained that Oncotype has data on outcomes from all of these women with different kinds of breast cancer, and they use the genetics of your specific tumor and do fancy statistical analyses (again paraphrasing, and please know I failed probability and statistics--only class I've ever failed, and depression of course figured into it but also a severe cognitive inability to make letters stand for equations and also a lack of interest in how many red marbles there would be in a barrel of a million colored marbles).

Essecntially, for me what matters is after their analyses, they give you a number from 1-100. And a number under 25 means that for me, chemotherapy does not increase survivability.

It's weird to think in those terms. But chemo has all kinds of downsides that maybe aren't so worth it if going through it isn't likely to make you live longer.

The number for radiation is 18. I asked her why and she said it's just different analyses.

So sincerely and truly praying that my number is under 18.

I relayed this conversation to a dear friend of mine who had a different kind of cancer, and he said, and I quote, "The fact that she spoke about it at all is very encouraging news regarding chemo. Doctors find it uncomfortable confirming even the previous day's weather."

What I can tell you for certain is that it's been 80 degrees and delightful in DC lately. I mean, delightful in a global apocalyptic kind of way.

More on boobs soon. They're so weird.

Friday, October 20, 2023

She's so unusual

When my surgeon's nurse practitioner gave us the update last week, I held my tears until she left, and then sobbed on Nick.

I'd been given the choice of mastectomy, or lumpectomy with radiation. I chose mastectomy.

This was supposed to be straightforward. Mastectomy would fix it.

But as it turns out, I'm unusual.

My surgeon came in and said this was completely unexpected. My tumor was so tiny, in the middle of my breast. And caught so early. 

In surgery, they typically remove 1-5 lymph nodes, two on average. With me, she removed only one lymph node, which looked fine. 

Until oncology examined it. 

At which point they found a tiny—.3mm—point three, not three, millimeters not centimeters, bit of cancer. Like, a pinprick worth.

A pinprick of cotton candy would be one thing. A pinprick of cancer is still cancer.

It's one lymph node. But she only took one. Because typically with tiny tumors, caught early, there is no spread.

One. So it's 1/1 that's positive. Not 1/2 or 1/3. Just one. 

So, like 100% of the ones they removed.

Fuck.

She said, started to say, "Your case is so interesti..." She caught herself. 

I'm sure it is interesting, scientifically speaking. I didn't begrudge her the finding it interesting, though I myself do not. I find it traumatic.

"Your case is unusual. You're an outlier. I'm going to be taking your case to the cancer conference on Tuesday."

I've heard other doctors refer to it as the "tumor board"—which my friend Brian said sounds like the worst kind of charcuterie platter ever. 

Come over! We'll have a nice pinot noir and a tumor board!

If I were under 50, I'd be getting chemotherapy as a matter of course. But I'm not.  There is the possibility of radiation. But the benefits may not outway the risks.

I'm in a grey area. I've heard this over and over.

Twenty positive lymph nodes, and it would be one very clear course. None would be another.

However.

This is unusual.

Some years ago my mom told me that shortly after we moved to the US and I was starting college and my brother was starting high school, he brother asked my mom if she thought he'd ever have a normal childhood.

We'd just moved from India. Our dad had recently attempted suicide for the second time.

And she said no. That ship had sailed.

My dad was mad at her for dashing my brother's hopes of normalcy.

Which, I think we can all admit, is hilarious.

In college, I tried so hard to blend. I was surrounded by people who looked like me, and I felt nothing like them.

I never really did blend, but as I got older, normal ceased to be a goal. Far from it. As India likes to say, "Who wants to be a normie?"

Not me. Except right now.

They sent the tumor off to Oncotype, which analyzes the genetics of the tumor, which are different than one's own genetics, and you get back a statistical analysis. 

They give you a score, which says how likely it is to recur somewhere else in the body.

Hopefully that comes back next week and gives them some guidance.

She also set me up with CT and bone scans. 

Which I was supposed to get today. 

But because American health care is dictated by for-profit, parasitic insurance companies who have yet to approve these scans, the NP canceled the the scans so I wouldn't be stuck with a huge bill. 

A CT scan with contrast can approach $7,000. With no guarantee of reimbursement.

We paid $650 out of pocked for a necessary but not-yet-approved MRI, which insurance approved days later. We are awaiting reimbursement.

I've been up and down, but honestly, on the whole I'm pretty good.

Some days I have to force myself to have a good fucking attitude. I make myself count my blessings.

But a lot of days, I just do. I'm grateful for so many people, so many things. Physically, ever day is better than the day before. This has been the case since day two.

Like I said before, I'm healing really well. I can raise my arms up close to my ears. Not quite as close as I usually can, like in warrior one, but close. They want me doing this, so my scar tissue doesn't restrict me.

I keep asking them if I can do yoga yet, and they say no, not yet. But can I hang from a bar? Also no. Go upside down on the inversion table? What? No.

They don't get those particular questions all the time.

Not from the normies, anyway.

Sunday, October 15, 2023

Goody bags for vampires

Just to let you know, this post is about replacement boobs and drain tubes. So if this icks you, which is understandable, stop now.

Because there's even a photo with tubes and collection bags, which I put down at the very bottom of the post so nobody stumbles on it accidentally.

You've been warned.  

So. 

Eighteen days ago, I had a double mastectomy with immediate reconstruction. They removed 98% of my breast tissue, and once the breast surgeon was finished, the plastic surgeon put in two gummy silicone implants.

They also put in two drain tubes--one for each breast. I've spoken with three women, all of whom had two per breast, so four tubes, and four drain bags.

My tubes exited my body via a small hole on each side near my ribs, and then drained down into attached bags that collected the fluid. My drain bags were hand-grenade shaped clear silicone containers.

The good thing about these is that you don't have fluid buildup inside your body. It drains out. The danger is infection, as you have two holes in your skin being held open by tubes, plus these two tubes that start well inside you. 

So before you open the grenades, you wash your hands. You clean the open-close thingies (there is a word for this but I'm still pretty vague post-anesthesia) with alcohol before closing them.

The tubes are long, which is why you have clips for the drain bags. Otherwise they'd dangle and pull and bug.

I was instructed to empty them twice a day into a measuring cup, and then record how much liquid I was draining per side. You also have to "strip" the tubes--meaning you squeeze them from top to bottom to make sure they didn't clog.

After, you'd squeeze all the air out of each grenade to create a vacuum, and seal them up again.

The first night Nick emptied them for me. I couldn't imagine doing it, ever. But at that point I couldn't really imagine standing up unassisted, so.

By the next day, it was fine. Open, pour, measure, disinfect, squeeze, close. Weird, but fine. 

And then I'd stand there with a cup of blood thinking how bright red it was and looking at how much to write down. In the beginning it was 60 ml if I added up both sides.

Every time I did this, I felt like watching Twilight. Even though I was well into Buffy, as planned.

It took me a while to realize why.

And on a side bar, the plastic surgery nurse practitioner, whose name is Tammy, told me that her husband, who is from Spain, learned English watching Buffy. She was all, "Real people don't talk like that."

This is true. Real people don't talk like that. Also, Team Angel forever.

Now, if you're a person who picked at scabs as a kid, or if you popped pimples, then you may understand that stripping the tubes could become oddly compelling. Trying to get every last bit out of the tubes and into the container.

So these tubes, or anyway, mine, started on top of the implant, curved around the side, and exited my body over by my ribs. 

I didn't know this until my one-week appointment with plastic surgery. Or rather, I didn't think about where they started. Just where they ended.

The nurse who put me in the room told me to take everything off my top and put on the gown.

And I was like, "Even THE BRA?"

She said, "You haven't removed the bra yet?"

Oh, hell no.

I'd been wearing the recovery bra since surgery. When they sent you home in a recovery bra, they tell you you have to wear one 23 hours/day for 4-6 weeks.

Since I couldn't get the surgery or drain sites wet, and I hadn't made the jaunty trash-bag top they'd said I could use to keep that part dry, I was just bathing myself in pieces, using hospital wipes for my top half and leaving the bra untouched. 

I didn't want to see it, or touch it, or even give it much detailed thought, if I'm being honest.

The nurse said I could leave it, and Tammy would help me.

When Tammy, came in, she was delighted with my range of motion, my ability to move, my overall whatever.

Maude and I met Tammy at my first appointment. This time I introduced her to Nick and Nicole.

Tammy opened the bra to discover I'd also left all the pads that had been inserted as cushoins post-surgery. I was wondering why they'd included so many abdominal pads along with collection cups and alcohol wipes.

Because my bra was stuffed full of them.

Tammy very pleased with the way my surgical scars were healing.

A+ in healing! Same pleased feeling I get when my dentist tells me it's clear I've been flossing.

She said, "Do you want to see them?"

I looked down and the first thing I saw was two dark, curved ridges poking up under my skin. I think I squeaked.

Tammy said, "Those are just your drain tubes." 

Horror show. They looked black, but I assume that they were dark red, as the tubes themselves were clear plastic.

"Agh! It's like Guinea worm!"

Then I looked at the Tammy. "Do you know Guinea worm?"

I was all ready to explain Guinea worm, and how once they've reached maturity in your body you see them just under the skin...and then they make a hole and burst out and you have to slowly wind them around a twig or pencil or something until they're out.

But she said, "I do. I'll get a stick."

Tremendously impressed.

So I couldn't look, but Nick and Nicole and Tammy, none of whom were grossed out by the tubes, all examined them and agreed that they looked terrific.

Even at home after that I couldn't look. Every parasite I've ever had was intestinal.

We returned last week and Tammy took out my drain tubes and pronounced me fine to take a full shower.

Now I can look at them, but they're still weird.

She assured me that the weird dents from the tubes would smooth out. And in fact, I should not rush out and spend money on a nice bra for the next six months, as there's still swelling and shifting and what have you.

The best way I can think of to describe how they currently feel is abraded. Like maybe I dragged back and forth across gravel for like an hour.

Which I have not done.

And which would still be better than having Guinea worm.

Friday, October 13, 2023

Let me explain...No, there is too much. Let me sum up.

India and I take turns saying, "I miss Nicole!"

India will add, "Whyyyyyy does she have to live in Texas? Why can't she live here?"

We would like everyone we adore to live right next door.

So before I tell you about Nicole, I feel like I need to tell you about Nicole.

After I got diagnosed, Nicole offered to come and take care of me. She reiterated this offer the weekend of my mom's memorial service, 10 days before my surgery.

She'd nursed her own mother through this, and Nick had to be away for five days for work not long after my surgery.

I took her up on the very kind offer.

Nicole and I met in high school in New Delhi.

We both arrived shortly before school started. She was two grades ahead, and she was gorgeous and fabulous and so charismatic.

Really, really smart, but could came across as a party girl. And did. Not. Care. What people thought. 

This kind of confidence is so attractive.

She wore a bandanna around  her head (this was the 80s, friends) and I started copying her. Because she was so fucking cool.

What I didn't know was that she'd been in a terrible car accident, and among other traumas, had had a head injury. She was covering up surgery.

Anyway, we sat together in French, and we lived near each other, and would often walk the 2.5 miles home from school together.

My sophomore year, we were both cheerleaders. I still miss those pom-poms.

Nicole graduated and went back to Texas, and we lost touch. Until a school reunion a couple decades later, where we picked up exactly where we left off.

Which is to say, happy to revel in ridiculous goofiness, content to chat endlessly about clothing, shoes,  and jewelry, and open to discussing anything and everything.

If no longer able to form a cheer pyramid.

She still has a southern accent, and both of us speak really quickly. Which doesn't have anything to do with anything. 

Until it does.

Nicole has this flawless, enviable skin, and dark hair and eyes, and she's always had eyelashes that a camel would kill for. 

If she were in a Disney movie, she'd be an Angelina Jolie-type Maleficent, but also little birds would be sewing her clothing and bunnies would do her dishes. Children would follow her joyfully down the cobbled path.

India and Maude's daughter absolutely adore her. She's a celebrity to them.

Because she's cool and she's FUN.

After our reconnection, Nicole started visiting annually. She'd come for a week, and we'd all have such a good time together.

When Jordan was in Kindergarten, he would sit on the floor of her room very quietly until she woke up, and then he'd ask her to play LEGO with him.

That year, she volunteered to come with us on his class field trip to the zoo.

It was unseasonably hot, and chaperoning small children at the zoo is stressy (what if I lose someone else's child?), tedious (yes, yay, you can count to 500! Overandoverandover!), and exhausting. Exactly the kind of activity that makes me want to throw gin, ibuprofen, and coffee in a blender as soon as I get home and collapse on the sofa.

Nicole maintained a Very Good Attitude, whereas I...did not.

Anyway, one summer after a reunion party, a friend offered to give several of us a ride home. Nicole and another friend and I were lined up to get into the back of the car.

The way we were positioned, Nicole would be in the middle. 

She turned to me and asked if I'd mind sitting in the middle. She said—or rather, what I heard her say was"I can't sit in the middle because of my crotch scent."

And I was all, well, July in DC is really hot. And Nicole is wearing a short dress. This kind of thing happens.

Naturally, I was happy to sit in the middle. Probably best for all involved.

Somehow, a year or more later, we figured out that what she actually said was, "I can't sit in the middle because of my CAR ACCIDENT."

Truly, I have no idea how the subject arose. But I was all, car accident! CAR ACCIDENT!

And she was all, "You thought I was talking about vaginal odor, and you didn't even blink!"

Listen. 

If you're my ride or die and you call me to tell me you've just killed your husband or some such, I won't ask why. I'll just remind you that I'm strong and my car is large enough to hold a body. 

And that, my friends, is Nicole.

Monday, October 09, 2023

'Tis but a scratch! Day zero: Surgery

I woke up from surgery thinking, "Oh, absolutely not."

No, nope, no thank you. 

We arrived at 5:30 in the morning for 7:30 surgery. First of the day! I'd fasted, and I'd showered twice with the anti-bacterial soap, and I had the button-down PJ top and stretchy pants. 

I was ready.

When the plastic surgeon drew a Sharpie line down the middle of my chest, and then little marks like eyelashes above each breast, I was all, "ARE YOU GOING TO CUT ME IN ALL THOSE PLACES?"

And he was like, "I'm not doing open heart surgery!"

In fact, I have two small slits under each breast. I haven't looked. although I understand from the professionals and loved ones who accompanied me that they're healing very well. 

Me, I'm still freaked out by the drain tubes. But that's a whole nother post.

The eyelash lines were where my boobs used to start, and marked the upper edge where my fake-o ones would be. 

And are now. Weird? Yes.

I poke and squeeze them gently, because they're right there, attached to my body but not really mine.

I mean, yes, they're mine, but I wonder if they'll ever feel normal.

Maybe I'll just walk around for the rest of my life with two comfort boobs attached to the front of me.

I remember meeting all the doctors and residents beforehand, and saying goodbye to Nick, and telling him that I loved him, that it would be fine.

The last thing pre-op thing I remember is being wheeled into the OR with the IV in my arm and the jaunty cap covering my hair. 

And then hours later I was gently awakened. When I very much did not want to be.

They were all, it's over, and now you can wake up, and when you feel better, you can go home. 

As if.

I went back to sleep.

During my C-section, I was awake, if totally loopy and kind of thinking I was Jesus for the way they had my arms straight out from my sides like a cross. When they awakened me from the delightful post-colonoscopy propofol sleep, I was all snuggled up on my side feeling the coziest happy ever.

This time felt more like being stabbed through a demonic vortex and waking up a hell dimension.

Or maybe like if a hippopotamus trampled you but you lived through it, and then someone offered you apple juice.

These people, these persistent medical professionals, they really wanted me to be awake. They wanted me to drink something.

They'd led me sleep a little more and then wake me up and ask me if I'd like some water or ginger ale or juice.

They were relentless. 

No thank you. OK, fine. I'll have this little cup of water with the big pill. And can I please sleep some more in this terribly uncomfortable chair?

"OK. We'll let you sleep a little more,"

Thankyouthankyouthankyou.

And then mere milliseconds later, there they were, waking me up again. "Lisa? From 0–5, how is your pain?"

"Five."

They'd tell me the doctor wanted it under three, if I recall correctly, before they could let me go. So they'd leave me for a bit.

And then again with the, "Where's your pain, from 0–5?"

"Five."

I wasn't angling for the huge, heavy-duty painkillers that I know make doctors nervous. (Thanks, Sackler family, for our painkiller addiction epidemic.) They just add nausea to my pain.

And I'm not a pain complainer. 

I didn't even make a huge fuss when the nurses realized they had forgotten to connect my IV pain meds after my C-section, and just kept telling me to push the button.

And all I kept saying I am pushing, but it really hurts.

Push the button, my ass.

It was five, and I was sticking to it.

If I'd had any wherewithal or sense of humor, I'd have said that this one went to 11.

Bring me a tiny Stonehenge!

Instead, they insisted on waking me up and asking, and I continued saying five. It was five, and five, and five.

They gave me some more IV something painkilling, and more Tylenol, even though I was all, Tylenol doesn't work on me.

Tylenol is bullshit. I stand by this.

They wanted me below Pain 5 and they were very nice. Since my inclination is to always make the other person more comfortable, if I'd been more lucid, I might've been all, "Oh, I think it's at 4 now."

However.

They kept leaving me to sleep and then returning and finally after we'd played the Under Five game 370 times, they said the doctor said I could go home with five.

I...won?

Then I went to another recovery area, and Nick was with me. The nurse there took out one IV but left the other in just in case I fell and hit my head while I was trying to get dressed.

I was both impressed with her practicality and slightly alarmed.

She showed us how to empty my drains, and explained a bunch of stuff that she told me I would not remember, which was absolutely accurate.

And then Nick got the car and they wheeled me out to him, just about 11 hours after we'd arrived that morning.

I remember thinking there was no way I could actually step up into the passenger seat, but then I did. No way I could climb all those stairs to our back door. But we inched up, with Nick behind me, hands on my waist.

They said I could take ibuprofen at home, and I was all, oh, thank god. 

I really just wanted a cup of hot tea. 

I'd had to fast completely since midnight—no more than a sip of water with medication!—and I understand the very real danger of aspiration, plus I'm a rule follower for rules that make sense, so I adhered.

But I couldn't bear the idea of ginger ale or juice. And my throat hurt from the intubation, so I declined the graham crackers or cookies, though I do like a Lorna Doone.

I desperately wanted hot, sweet, milk tea. Tea of my childhood, tea that fixes so many things.

Nick made a cup for me, but then I was too tired to drink it. 

He brought up homemade soup from friends. And I was too tired.

Hours later he came up to find me kneeling at my bedside table, because it was the right height to not have to lift anything, drinking tepid tea and slurping room temperature soup from the tipped bowl.

They were amazing.

Nick helped me to the bathroom and emptied my drains, which, if you've not had surgery that requires the surgeons to leave drain tubes inside that drain out into containers, it's as weird as it sounds.

They send you home in a compression bra, which you have to wear constantly the first two weeks.

They very kindly gave me an extra. These bras, which incidentally are pink, they have plastic loops (also pink) attached so you can clip on the drain bags so they don't just hang. They're thoughtfully designed.

I mean, if you enjoy dangling things from your bra, that is.