Warning:  crabbiness to follow.

They scooped out my boobs yesterday.  I was first case and they didn't get me back to a room until 8pm.  I slept for a few hours, being interrupted every 1 - 2 hours for this or that.  They put me on a bed alarm, and now I am stuck in this chair with a chair alarm on.  If I could use my arms better, I'd be better at shutting the damn thing off.  "It's for your safety."  Annoyed as hell.  I'm stuck in this chair, with the alarm set, and the CNA did not give me my call light.  CNA 101.

I'm hooked up to a tele monitor because I had a junctional rhythm for 58 seconds in PACU yesterday.  Hard to type, because the pulsox is on my left forefinger. 

Also, haven't had coffee yet.  They sent a clear liquid tray (no orders for a regular diet were placed yet...) with TEA.  What is this, the UK?  I called down for two cups of coffee a half hour ago. 

Just crabby.  They gave me toradol IV and a 5mg oxy tab about an hour ago, and I'm still achy.  They're talking about sending me home after lunch.

I think the surgery went well.  They have me in a fancy surgical bra, stuffed with some 4x4s,  I've got two JP drains in, one on each side.  My "breasts" feel tender, and they are red, and beneath the tenderness are solid lumps.  It is weird, and I haven't really seen them yet. 

Anyway.  Just posting that I got through this part.  Will stop now, rather than spit my crabby bile any further.

There has been little to report.  I mean, on Tuesday afternoon I have to put a lidocaine cream onto my breasts so that they can put a needle into them to inject radioactive (at times, I exaggerate) dye.  Then Wednesday morning, Mark and I will get up sometime around 4am to get to the hospital at 0530 for an 0730 case.  They'll take my boobs off and put tissue expanders in, then wrap up my chest with Coban, which I have to mostly keep that way for the first 48 hours. 

In case you're curious, these are what fake boobs look like.  The ones with ports are the tissue expanders.

I appreciate the people that have been reaching out to me, sometimes just to say hey.  I'm bad at responding, because some days I'm just living in this cave I find it hard to get out of.  And when I do get out, I'm using my energy to make art.  Or craft.  Whatever.

I didn't go back to work this month.  I don't think it would have been a good thing, or worth it in the long wrong.

I've been arguing with Cigna, and finally got a different representative because I used the word 'legal' in a polite email.  They've extended my short term disability, as requested.

I have started a true fiber art project.  I finished the bed-sized crocheted blanket, which took 26 skeins.  The thing that bothers me about it is that I had to wash it before finished, and it felted.  So I don't love it as much as I want to. 

I'm now making small (12"ish x 24"ish) art quilts.  The total project is twelve of them, using a crocheted element symbol (i.e. a motif I liked), and quilted/foundation pieced base, with applique and couching yarn onto the quilted surface and stuff.  It might be totally awesome when I'm done, and it might be a mess.

When I have energy, I sew, when I don't, I crochet.  (The only problem with this is the initial crochet pieces are almost done).  I'm hoping that once I've completed the quilt tops, I'll be able to do handwork (I'm going to hand quilt) when I don't have much energy.

I'll post photos as the project progresses, because I'm sure it's difficult to envision just from these pieces.

Wish me luck this week.  They'll send me home Friday, maybe Thursday.  To come home and convalesce some more. 

I gotta get sewing.

It'll be a bilateral mastectomy, and the earliest they can do it is October. I'm 50/50 on how I feel about going back to work next week, particularly since I've had so many doctor visits and calls. Don't feel rested. Don't feel like I won't go back to work and just burst into tears over something dumb. I have been watching my hoard of Rio Olympics, and some of the commercials start me crying. (*sniff* “That's...so...beautiful.” *sniff*) Really, any sort of tinny, pathetic, tear-jerking background music on tv will do it to me right now.

So, okay, maybe not next week.

But it looks like I'll be back to work for a week, maybe two, and then they'll take my boobs off and put inflatable balloons in. And I think? I will also lose a nipple. Which is completely weird to think about. The plastic surgeon said that her goal is to make me look normal in my clothes, which has nothing to do with “nipple-sparing”. (All these great terms I'm learning...) I don't think I've ever looked normal in my clothes, so that sounds like sort of a bonus to me. She is not promising I will look normal out of my clothes. She is clear on that. Implants do not feel like real breast.

I've actually been asked that by friends. If I get fake boobs, they want to squeeze them to know what they feel like. Many friends at work, actually. I imagine when I come back, there'll be a huddle in the "phone room", where everybody's squeezing my new fake boobs. There's so many good reasons the docs seem afraid to walk into that room. They walk into some strange things sometimes.

I think all of this has been a lot to process. I mean, that's a first world problem, right? The luxury of being able to be home to “process.” There are women who have to work through chemo. There are women who can't afford chemo. There are a lot of women who get to “process” things while being the sole breadwinner and caregiver for their kids. There are women who have to do this alone.

I am a lucky bastard, and I know that. I am grateful for the people I love and privilege I've got.

I'm writing on my deck, on a sunny September morning. My back yard comprises of mostly uncontrolled, wild sunflowers. There's a chill underneath the morning breeze, and the bees and wasps, though active, are moving slowly enough that I could catch one with my bare hands if I wanted (I don't; just saying I could).  They're sluggish. The darker part of the year is coming, and if I don't pick my peppers soon, they won't be any good. I'll be making cornbread today, with my fresh peppers in it. I'm ready for the coming darkening of the year; am really looking forward to it. I think I'll be something different next year. And some part of me needs to curl up and hibernate under seven quilts until then.  Like Inanna preparing for her way to meet Ereshkigal.

The plastic surgeon talked a lot about two things: infection and scars.

Infection is a concern anytime you're going to break skin. The bigger the cut, the more fuss you're doing, and if you're putting anything artificial into a body, that risk becomes greater. But the factor she's most concerned about is my “active infection,” to which she means the cooties I had in my pleural space. “But,” I say, sort of dumbly, “it's gone.” Blink. Blink. “I had six weeks of IV antibiotics, and then several more weeks and am still taking moxy-floxy (which is a high-octane, broad spectrum oral antibiotic), and then I have to finish up with doxy until the bars come out.” Do we still believe that there's cooties in my pleural space, when there is no pleural effusion, even after the second surgery, and my CBC, CRP, ESR and all the other alphabet soup of blood tests are completely dead normal?

I mean. I am the most bacteria-free person I know right now. I mean, sure, my skin has the same cooties as everybody, but my insides have been shocked sterile by now.  I have to take probiotics supplements so that I can digest my food properly.

But I think medicine is still full of boogity-boo. And I think people think magically, whether they want to or not. She said she doesn't know the statistics of getting an infection after you've had an infection (which, by the way, was NOT systemic, and she's not going to BE doing anything in the pleural space). She wonders if the antibiotics I'm taking are suppressing some hidden infection. I'm not saying she isn't a brilliant surgeon or that she's wrong to be concerned. I just think medicine is partly as much magic as it's always been from when we first figured out how to create fire. And that's a little bit reassuring. Because magic is something I can work with.

Yeah, infection is a risk. Yeah, it's a higher risk because we're lopping off two boobs, and putting in two inflatable balloons. And if either or both get infected, they have to come out. And then I will be boobless, I guess.

And she talked a lot about the scars. I have scars all over my torso, so adding more doesn't feel like a big issue to me. They have to re-open the scar under my left breast, and the one under my right, which was from April. The plastic surgeon was showing me slides, photos of women and pointing out how the scars are often not noticeable. I already have noticeable scars, so it's just a moot point. At the beach, I imagine people will wonder if I survived an attack by an alligator.

You know what scars bug me? When I'm showering, I'm still washing over dried blood under my left breast from where the latest incision is, but what I notice most are the IV scars. The PICC line scar is still there. The arterial line that the last anesthesiologist comPLETEly butchered is still painful. He stuck me three times, and there is still a yellow-purple bruise as further testament, as if the three scabs aren't enough. When you're in the ICU, and your doc is putting an A-line in your patient, you don't realize that the patient will know if she or he had to stick multiple times. You aren't aware of the bruise that will be there, and will still be hurting your patient two weeks later.

I still have a scar from the nurse that set the wrist IV at UCH when I was there for the effusion. And a little scar on my right hand from the first admission to the U. Those are more than two months old, but they're still there. The scab from the nurse who did the most recent IV at Mayo just came off today. It's still pink, with a small dot of blood. I don't know who hit me with what but on my left upper arm, there is a gigantic yellow and purple bruise from the OR at Mayo. I mean, it looks like someone took out a crow bar and whacked me with it. I have a photo of it somewhere, because I was impressed.  I don't know what the hell they did to me there.

I didn't know, as a nurse, that my patient will be sitting on her deck, often MONTHS later, remembering that I put that IV in. She remembers my face. She cares more about whether or not I was kind to her than whether I got her on the first stick.

There's little birds that come eat at my smorgasboard of sunflowers. Beau is sprawled out on his back in the sun, paws in the air. Sometimes he flips over to talk to the little birds, in that weird staccato speech that the birds don't seem to respond to. I wish I knew what he was trying to tell them.  And why he thinks the staccato speech is better at communicating whatever it is rather than his mrow-ing speech he uses with me. 

I have no big conclusions or neatly-written endings for today. I think I'll walk before I make my cornbread.



Okay, so all I did was a 4,000 step walk, came home and threw together cornbread (a 10 minute effort) and am having to lay down flat on couch, unable to do anything but type. So, maybe a little optimistic about ability to go back to work next week. I am deconditioned, I guess. No narcotics so far today, just tylenol and ibuprofen. I'd rather not take any yet, but I really need to be immobile and horizontal. Dammit.

I should have realized that. I took Chase to school yesterday (and he drove on the way up), and stopped by to see Jane. Granted, Chase's school is a 50 minute drive north, but still.  I could only stay an hour at Jane's, and was wiped out. I went home and went straight back to bed.

What a pain in the ass this all is.

Well. There it is. Something really good about today, though, is that RuPaul's Drag Race All Stars is on tonight! I know it's also a football game tonight, apparently a real one. I'm totally going to play the Breast Cancer Card, though, and claim the downstairs tv for RuPaul. It's not like it's a Packers game, anyway. Mark and Chase can go watch in the basement or our bedroom while I watch my drag queens with a glass of wine. Breast cancer has to be good for something, right?

Yesterday was my first day off at home alone, without having to see somebody in a white coat or green scrubs for something in three weeks.

It was glorious.  I was a little productive with some chores and stuff, and I did do some walking, but mostly I grew a taproot into my bed.  I watched Drag Race All Stars, episode two (the shock!  One of the queens left of her own accord!) and ALL of the Harry Potter movies back to back.  And crocheted.  All day.  And loved on the cats.  First day that I thought any actual healing might be taking place.

Unmedicated, I feel like a horse kicked me in the chest a day or two ago.  As of today, I am only taking the long-acting morphine at night (which I will likely drop tonight), max dose ibuprofen three times a day and about three oxy 5's a day.  I don't think that's bad, eight days out.

I don't yet have a plan for fixing the breast cancer as of today.  The plastic surgeon wasn't available to meet with us Wednesday, and so we didn't get complete information.  I wasn't a big fan of the medical oncologist.  But I liked the surgeon and the radiologist.  I have two main choices (both of which have all these permutations):  lumpectomy and radiation, or simple mastectomy.  It's possible both boobs have to come off.  If nothing else, the left is going to get an excisional biopsy, and they still might find cancer there.  The radiologist doesn't want to irradiate me.  She thinks my chances of more broken ribs are too high.  Which is good enough reason for me, so for me the main decision is done.  It seems like it should be simple to just say, "Okay, let's pick a date for you to lop off my boob." It, frustratingly, is not that simple.

Because they don't want to lop off one without knowing if it makes sense to lop off the other (so I will be waiting for 8 - 12 days for genetic testing to come back), and they need to know what I want to do about reconstructing before they go deconstructing, which is reasonable.  And the plastics person may limit my options because "of my empyema."  You know...the three liters of pleural goo that is gone now, and theoretically no longer exists, but for which I'm still taking antibiotics.  "But it's....gone," I said to the surgeon.  She nodded; she hears me.  "I think the plastics people may hesitate to do the reconstruction with expanders, out of fear of infection.  They may want to use your own body."  "Which means two surgical sites, more pain and a longer recovery."  She nodded, hearing me again.  And clearly feeling badly about all that. 

Jarosweski's scrub tech's face flashed before my eyes again.  I really wanna hit that guy.  That is neither fair, and may be completely misdirected.  But I can't control what my mind does in these stressful situations.  That's the guy whose face I wanna punch.

So nothing further can be done until we talk to the plastics person.  I don't think I need to wait for genetics testing, honestly.  They're already going to be taking the fibroma out of the left, which might leave my left looking wonky, too.  Fine.  Lop off the set and give me a new ones.  Saw Kate and Felecia Thursday, who pointed out that I'll be a 45 year old woman with a 25-year old looking perky rack.  Which is a most excellent point. 

None of the physicians even asked me the question about whether I wanted to reconstruct or not.  I mean, they said I didn't have to, and that could do it much later down the road if I wanted to wait.  I have put a lot of thought into it over the past week, and I think I will, and since fewer intubations is good, I'd rather have a single longer case than surgery-recover-surgery-recover.  I think leaving a blank wall of chest, for me, would be nothing but a reminder that I've had breast cancer.  I mean, sure, they say that Amazon women lopped off the breast on their bow-side so they could shoot better.  And for some women, they may get a Yes, I'm a Badass factor from it.  Nothing wrong with that.  Cancer is horrible, and women surviving it are tough. 

They really are; I've had quite a few women in my world come out of the woodwork since I've been blogging to tell me that they've survived, or that they're still fighting.  This has been incredibly humbling, and I'm grateful to them and I have huge admiration for them.  Can't even tell you how much their words have meant to me, and I am a little in awe of them.

But I'm not a badass.  I'm not a fighter.  I don't belong with those women that really are fighting the great fight with cancer, and battling and winning, and taking chemo and radiation and awfulness.  I go to my doctor appointments on time because I went to Catholic school, and it's made me pathologically on time for things.  I am not a Pink Warrior.  I'm simply OCD, and I have some evil boogers in my breasts and I want them out. 

I'm not really that good at archery, by the way.  I doubt that losing a boob would help me much with that.

And if you choose to wear a prosthetic outside of your body (like my mom does), at some point you're going to want to get into the ocean right?  These are the type of burning questions I have.  I asked her about this.  "Ma, how do you swim?"  "Just wear a t-shirt."  Except that's sort of silly.  Not because you may be wearing a shirt for sun protection, anyway, but....wearing a t-shirt into the ocean will get it wet.  And they have these things called wet t-shirt contests because the t-shirt, being wet, accentuates your breasts.  That's sort of the point.  So....said wet t-shirt will not hide your lack of boob...it will pretty much draw attention to the lack of boob.  I'm not sure if mom really thought that answer through.

And my mother hasn't been in ANY body of water that isn't her bathtub in 13 cancer-free years.  And it makes me sad for her because although oceans are big, and scary and full of dark leviathan creatures that want to eat you (I watched Jaws too young), they're still beautiful and part of our brains still remember that we came from them and we should all go to them.  And maybe my mother will never go into an ocean again for the rest of her life because she is smart enough to figure out the whole "wet t-shirt" thing will pretty much backfire, and so she won't go and that's ...not healthy.  Oceans are good for us.  She just excised something out of her life that ...she shouldn't have to excise.

Besides, if you WERE to go into the ocean with your boob prosthetic....it could fall out, and some shark might find it, chew on it, and then you've polluted the ocean with your fake silicon boob.  Sea animals will breathe that polluted water.  That would be terrible.  Save the sea turtles!  Don't wear silicone prosthetic boobs into the ocean!

So if you're not going to get a fake boob implant/muscle flap, you have to think of these things.  Are you okay with a flat scarred chest wall, even though you have to protect the sea turtles by keeping your prosthetic boob on the beach with your books and suntan lotion?

....

So I think I don't have a compelling reason to want a flat chest wall full of scars.  I suppose some people might even want to tattoo it.  That's a different way to own what you are that some people choose.  I don't have anything else I need tattooed on me. 

And I would like to have clothes that fit me.  And once this is all over, I will once again have a good collection of bras to choose from.  With some flashy rhinestones this time.  I still have good corsets, too, I just haven't healed enough to try to refit them.  So.  Fake boob(s) it is for me.

As you might imagine, I want this all done yesterday. 

Next week, I'm out of FMLA.  Although I don't think Sam's gonna fire me, there must be something that they...DO about that.  The UCH people want to know (and I want to know) when I'm coming back to work.  My short term disability is approved through Sept 29.  Let's get this shit scheduled.  Let's get moving.  Now. 

I could have a lumpectomy with sentinal node biopsy now, which is "outpatient", and then in a few months have more surgery.  I hate this idea, though I see the practicality of it.  Remove the cancer now, do the more complex risk removal later  I'm hoping to meet with the surgeon Tuesday, and schedule the mastectomy that day.  (Of course, you're coordinating a calendar for two surgeons, and blocking a long time to do both.)  

You leave work for something medical, and that can happen to anybody.  A second time is not just twice as hard.  A third time, and maybe people think you're just not reliable anymore.  How the hell am I supposed to get anything done? 

Am BUSY.  I mean, right now, I'm on perpetual hold.  But I'm BUSY.  I have things to do.  Let's get this shit movin.

But today is Saturday.  And there is nothing in the world that I can do, but be good to my body and heal up.  So.  Today's agenda:  clean upstairs bathroom, sort through bills, have another cup of coffee, crochet, kill pixelated dragons in Skyrim, pet cats.  Walk.  It's Labor Day weekend, and Chase comes back with us tomorrow.  This is my four day weekend away from medical people, and I'm actually good with that.  The onslaught of decisions and needles and testing will pick back up again on Tuesday. 

But I'm very busy right now.  I'm going to go get my next cup of coffee.

We got sent home yesterday.  Having the chest tube out of my left flank improved the pain issue quite a lot.  It left me with a small apical pneumothorax, but I had that last time and it resolved.  I could tell my nurse wanted me to consider staying another night but I did get better sleep last night than I did in the hospital.  He wanted me to feel safe about a pleural effusion not coming back.  I'm not gonna feel fine about that for probably a month. 

They did send me out with a JP drain, which may get pulled today.  If there's any doubt that it's putting out more than 30cc over 24 hours, I'll keep it another day, and get it out myself tomorrow.

My kidneys are working energetically (they dumped a lot of fluid in me intra-op), my gut is needing to be coaxed to wake up.  Pain is not as bad as the first surgery.  I can get out of bed by myself, for one, and I'm doing okay movin around.  I need to stretch my chest out more, and it doesn't feel good to do this.

I've got new scars on my chest, a smiling line under my left breast now, clockwise up to my sternum.  The left side is pretty bruised, and theres' a matching purple bruise on the left arm.  It's not too horrible.  I can only pull 750cc on my incentive spirometer, and can't sleep on my left, but I can sleep on my back and my right.  Some more walking at home on the track should help a huge amount for those things.  Chest stretches, which hurt a lot but will help with all my fancy scars.

I guess what happened to the ribs is that they had fractured, and begun to knit together underneath the bar.  There's no doubt this needed to be fixed with surgery.  The hardware looks a little like a bike chain on the CXR; it's longer than I expected.  I'll upload when I have all the imaging.  She actually didn't do plating with the cartilage.  She cut it in places, and then tied it with fiber wire to the bars.  I was a little loopy and craning my neck to see that when she was going through it in the hospital, so today I should have a better understanding of what was cut where.  It is possible, but not probable that the cartilage will adhere to the bars.  We'll find out in 2.5 years, but she thinks it will not. 

So, yes, am using MS Contin, but only 15mg instead of the 30 from last time.  And I have had no oxy since I left the hospital at like 2something yesterday.  Back on ibuprofen 800.  Miralax (bleech), and the moxy-floxy at night. 

We go for another CXR today, then meet with Dr. J, and then hopefully I can get all my imaging.  Mark wants to take me out to dinner (I'm less enthused by food in general at the moment). 

And now I get to think about cancer.  If it were just this surgery, I could probably be back to work after two full weeks.  (So...probably October 12.)  The pain isn't that awful.  I need to stretch more and I need to walk more and it's August in Phoenix.  Mark is making me use my IS.  But once I deal with some business today (making follow up appt with PCP, doing health history forms for the breast center people), I fully intend to bury my head into playing Skyrim, and slaying dragons. 

I am grateful to Dr. J, you know.  I was really upset by the infection, yes.  But because of this surgery, we found the breast cancer I was going to inevitably get early.  I told her that.  So.  um.  yay. 

This isn't the stupidest year of my life.  I thought it through yesterday, and stupider years were:  2012, 1990, and 2005.  Maybe in that order.  Fifth grade wasn't that fun, either, come to think of it...1981.  Probably cancer is worse than Sr. Maura was....but you know, that's a bit of a toss-up.  You wouldn't be able to convince 10 year old me of that.

I think 2017 should be a good one, thoough.  I have decided.  I should also think of really awesome years, too:  2011, 1993, 1998, 2002. I think 2017 should be awesome.  And that's only four months off.  Four months is enough to get rid of some stupid cancer cells, I think.  Probably have more scarring and stuff on my chest.  And I'm going to have to be even pickier about bra-shopping (and this is something I am picky about now.)  I don't want any boring beige bras, either, ones that scream, "I see the softer side of Sears."  If Rupaul's girls can wear extravagant, jewelled corsets and they have no breasts at all, I should be able to do the same thing.  Maybe THAT's where I need to go bra shopping...Victoria's Secret has let me down several times now.  I need to go down Broadway to the shops that have size 20 stilettos. 

Yes.  I need an absolutely ridiculous, gorgeous bra worthy of Drag Race.  After all of my doctor appointments next week (er...this week, now)....that's where I'm gonna go, hunty.

But for today, I'm going to drink Miralax and kill dragons.

So it's 8am post op day 1, and I'm up in a cardiac chair and my nurse, Robert, brought me toradol and coffee.  This makes him the best human ever in my book.

I have a Dilaudid PCA, and I banged on it 14 times overnight (four of which were before and after I got out of bed this morning.)  So if I sound disjointed and fuzzy, it's because I am.  I also have a pulseox on my left middle finger, making it difficult to type the letters e, c, d, and I keep putting extra r's and f's in things.

Have not seen Dr. J or her PA post op.  (Or if I did in PACU, I have no reollection of it.)  Since it's Saturday, I'll probably see the PA.  She fixed the ribs, and I asked her to fix the cartilage, too.  She had heard from Kelly that the breast cancer was on the left, and was concerned about putting more metal there...and then proposed we wait until the bars come out in April 2019.  And I don't want to have another big surgery looming ahead of me.  So she plated it.  I don't know what I look like yet.  I've got a foam dressing and a binder over it. 

I've got a chest tube in, which has put out almost nothing, so hopefully that will come out today and my pain will immediately improve by leaps and bounds.  I've got a JP drain in, too, to suction (wall suction, not just the bulb itself, which is a weird setup).  It has put out 120ccs of serosanguinous...I'm not sure if it's submuscular? on the left?  I don't know, and I will ask.  My estimated blood loss from surgery was about 200ccs.  I don't know if that's normal for the modified Ravitch.  There was only 50 EBL from the original Nuss. 

She told me she had to make an incision under my left breast and up and clockwise medially.  More scars.  It's fine.  The scars don't bother me.  I'll just look tough in a swimsuit.

And I've got an IV in one of the worst places possible:  my left hand, between my ring finger and pinky...that little vessel there was all she could find.  I asked anesthesia to put one in my forearm once they fill me up with fluid, but maybe they couldn't find a vessel, either.  I did have an A-line for the case; I just took that dressing off.  And a foley, of course.  About an hour after Robert gives me my Lasix this morning, I want that out, too.

So we should be able to get rid of the chest tube, the foley, the continuous pulseox, and the PCA today.  And maybe I can persuade them to take the tele monitor off, too.

And yeah, I hurt.  Coffee makes it better.  Having it over with makes it better.  Dilaudid takes the edge off, but it doesn't do a whole lot more for the pain.  Makes me sleepy.  Like, I think I'm blinking for too long.  They didn't do the epidural, because of concern for infection.  So, okay.  The epidural would've been the best thing for the rib pain; but it's okay.  The toradol is kicking in, and it's all right.

So now I'm getting really sleepy.  I did sleep okay last night, considering I'm inpatient.

Robert's back.  I'll be back later.

We're on the plane to Phoenix to go have surgery to correct my stupid fractured ribs that are stupidly poking my ventricle, and maybe correct the carinatum that was created from the excavatum procedure and it all feels a little secondary right now.

And at the same time, I have the stupidest and most fixable of cancers, and have not a damned thing to whine about.

I got a coworker fighting the REAL fight with a cancer like an octopus of doom in her boob, and she's getting chemo. Which is poison. I'm a nurse, and I'm not supposed to say that, because it's poison that saves people's lives and I know that, too. I also know it's fucking poison. I don't know how to help her, other than to hug her and text her sometimes that she's awesome.

And I probably won't need it. Chemo, that is.

The standard treatment for DCIS is lumpectomy, with or without radiation, or mastectomy. With either option, possibly the drug tamoxifen for at least ten years.

Thank ALL the gods about the likely-no-chemo thing. (I haven't talked to any of them lately. Maybe I should. Maybe Isis is up on the latest research on DCIS, I shouldn't dismiss out of hand that she's hasn't got an opinion on these things.) (I should ask.)

Yeah. It's fuckin cancer.
….

I've been expecting a diagnosis of breast cancer for 13 years, since my mom was diagnosed at age 53. She had DCIS, too, mildly invasive but at a lower grade than me.  Have never been pregnant, much less breast-fed.  Was on oral birth control for a solid 20 years, and then switched to an IUD with the (much smaller dose, but still present) hormone release.  At age 44 and 3/4, I am a recipe for breast cancer.

Oh. I've been learning cancerspeak. It's another language. Let me help translate.

I explained it to Chase last night, and I'm partly making this up maybe. But maybe not and maybe this makes sense and is correct....or correct-ish. I have ductal carcinoma in situ (DCIS). Ductal is obvious...it's in the ducts of the breast. From which milk would emerge, if you've done that sort of having-a-baby thing (which I have not). Carcinoma is obvious....-oma is some type of tumor thing that doesn't belong there. In situ means in place. So. DCIS means cancer of the ducts that emerged from there and is sitting there.

I told Chase, who likes science, and had biology, to look at it on an X-Y axis of seriousness. Invasiveness is one of the axes....mine is not invasive, as far as they know right now. Yay for me. My mother's was mildly invasive.

Another axis is the “mitoticness” of it....which may not be a word, but he understood. Mitosis is the process through which cells divide, and the degree of this is graded. Mine is a high grade, so my little cancer fucker cells are breeding like fucking rabbits. They need to die. Now. So this is bad. Or, maybe, more accurately: less good.

DCIS is still the best breast cancer to have.

Yay. Me. Woo....?

I have THINGs to DO and this cancer shit is REALLY inconfuckingveniencing me. Sorry. I dropped a lot of F-bombs after my biopsy too. I kept apologizing, but I couldn't seem to stop it. Angie was my radiology tech and she was the awesomest person ever. Then Asmet helped me with coordinating the biopsy, and she was completely awesome, too. The two of them were there for my biopsy, with Dr. Amy. I really did have the A team, literally and figuratively. I couldn't have asked for better people to take care of me.

Mark is taking care of me, too. He is worried. He doesn't know cancerspeak either. This stupid crap is new to both of us. We'd rather be doing something else.

When I'm unconscious for THIS surgery tomorrow, I am going to let him have the books I got from amazon.com. (Of COURSE I got books from amazon.com. I met the Fedex guy at the door, twenty minutes before we left for the airport. Only because I want the patient's-eye view before I start going to town in PubMed. I love that I have free and easy access to PubMed because of my job.)  One was a funny cancer book, the other is not.  I read the unfunny one until I can't, and then I switch to the funny one until I can't and flip back and forth.

So. I'm okay. I am deeply grateful for the people in my life. My mother-in-law called today. My father-in-law (who just got home from France) called yesterday. My colleagues have been fantastic. I am a lucky bastard.  I am really happy with all my UCH doctors.  My PCP called an hour after I got off the phone with the pathologist, and asked me to come see her for my mental health.  I suppose I could take that as, "Michelle, you are either now, or about to become, a complete emotional wreck and you need to be medicated for your looming DSM-V diagnosis."  But I didn't.  I think it was kind.  I think she cares.

The weird thing (or, not weird) is that if I hadn't had the pectus surgery, this little shit of cancer would probably not have been found, because it was living...squatting without paying rent, or cleaning up after itself....in the medial aspect of my right breast, deeper into the tissue. Completely inaccessible to a mammogram last year. Little fucker.

Sorry about all the swearing. Just, you know. I am learning that cancer makes you swear...a lot more than you typically do

So.....yay? That I had this surgery....and I got infected and found out via CT scan that I had a bone poking my ventricle....? And then I felt a lump in my left, and got my annual mammogram “with diagnostics” right before this SECOND big surgery of the year and it would not have been found if they hadn't popped my sternum up.  I mean....yay, right?

When Mark, Chase and I were talking about it the other night...(god, was that only last night?)....we concluded that it was sort of a good series of possibly not-accidents.

Fucking cancer.

Next Wednesday, the day after we fly home from the OTHER Biggest Medical Thing To Happen To Michelle This Year, we go meet a multidisciplinary team: a surgical oncologist, a medical oncologist (read: chemo person), and radiation oncologist, plus a genetic counselor “because I'm young.” (What this means isn't really clear to me.  They'll be testing my genes to see how likely I am to have horrible cancer, I think.  I think we've already ascertained that I have failed the genetic and lifestyle combination crapshoot, so the purpose of this is not clear to me.)

I was talking to Erin, the Breast Center nurse, and said, “I just want this shit out. Like, now. I'm already gonna be on FMLA....how far out are you scheduling lumpectomies and mastectomies?  Because I will do it next week if you'll let me.” She said 1 – 2 weeks for lumpectomy, 2 – 4 for mastectomy. She asked, “If you're sure that you want a mastectomy, we could also have you see a plastic surgeon....?”

That threw me off, because I hadn't even thought about that yet. Breast reconstruction. Oh yeah. Women do that. I thought about it some, and left her a voicemail that sure, I would meet that person if she could arrange it because I would be open to hearing what he or she has to say.

I have written elsewhere in this blog how I have felt about a boob job for me. It's a sore point because some physicians erroneously believe that pectus repair is about body image issues.  There is literature out there that discusses body image and pectus.  Fine.  It's a valid area of research.  Some of us aren't doing this because kids are mean.  Some of us are doing this because we can't fucking breathe and we have tachyarrhythmias.  If I'd wanted a boob job, I would have gotten one a long time ago.  I did not want one.

I don't care what any other woman does with her body; it's her business. But ever since I was 18 years old, and that nurse practitioner, at my very first visit to Planned Parenthood, told me to go see a plastic surgeon....I have kept my body the way I am as a somewhat-unconscious hell-with-you to people who judge others based on their appearance.

My breasts were always significantly uneven because of the cavernous divot in my chest. Yes, I was self-conscious as a teenager, but what teenage girl isn't self conscious about her body? My good friend and hairdresser, Katie, has Eyebrow Issues...in the sense she's very conscious of them looking nice, and evenly spaced and....whatever else people judge eyebrow criteria on. Because she's beautiful and perfect, inside and out, and the only thing the mean girls in her Catholic school could come up with to make fun of her were her....eyebrows. Even the most beautiful of people don't like something about their appearance.  And chances are outstanding, you don't notice it.  Unless you're a jerk.

Girls and boys are mean. Alan Cox once made fun of me in the library in 7th grade about shooting a duck and its “tits flying off it's body,” but that would never happen to me because I had none. (Are you reading this, Alan? I love you, man, but, you were a mean kid in 7th grade.)

I look like what I look like. If it's not good enough for other people, not pretty enough, not hourglass enough, dude, totally your loss. My wonky right breast has never ever been a problem for any man lucky enough to see it up close and personal. It never got in the way of ...any of my social activities. Go pound sand, insensitive nurse practitioner who thinks 18 year old girls should get boob jobs. You are wrong.

I got a tattoo over my right breast about ten or fifteen years ago...long ago enough that the once-black ink is turning to that payne's grey that older tattoos have. I didn't think consciously about where I place it (because, honestly, a little inebriated at the time). But I didn't want the tattoo anywhere else. It was the body part I wanted....decorated?  Offset?  Feng-shui-ed?. In a permanent way.  I'm not sure I have the right word for that.  If there's a German word that means to place a piece of art next to something that reflects kindly and aesthetically shines onto something else that the art is near....that's what I mean.  (German has a vast vocabulary for ephemeral and yet hyper-specific things.)  (Maybe there's a Mandarin word for that, too.) 

At the time, my thinking was not that complex about it.

And so....they are offering me to make my breasts look...”normal.” With silicone and stuff. I think.  Women feel strongly about this one way or the other, and I don't know what to feel.

If you're thinking I'm putting the cart before the horse and that maybe they won't take my breast off....it's because I've been obsessively thinking about cancer for a whole five days. And I'm an efficient thinker.

I'm at a very high risk for not only getting diagnosed with cancer (which I have, at age 44), but having it recur. Something like within five years, I could be doing this crap again.  And having it be worse. And worse means chemo, which is a fate some people choose to die in lieu of doing. I may not have strong feelings about breast reconstruction yet, but I had strong feelings about chemo even before I watched my mother suffer through it.

No breast tissue, no breast cancer. No breast cancer, no chemo. Bada-bing. Yes, I could get colon cancer or lung cancer or cancer of my pinky toe or whatever, but I eat broccoli, don't smoke, and I get up and move and the whole point of this surgery this year was to go back to exercising like I used to....because when I can breathe, I like getting up and moving. I drink red wine moderately enough that my liver function tests say it's okay to keep drinking and don't eat anything with eyeballs. I do not skydive. I brush my teeth and floss. People like me shouldn't get cancer. Dammit. Nobody should get cancer. It's a stupid thing to get.

They may want to radiate me, which is complicated because I have metal bars in my chest. Yes, I've already told Dr. J. I got a call from Kelly today that Dr. J is strongly considering NOT fixing the carinatum I now have because she doesn't want to put more metal in my chest if radiation is a thing that may happen. I want her to fix the carinatum, though. We'll discuss it tomorrow morning.

So I have a lot of decisions. I'm a decisive person, generally, but these are not easy.

I think we might be circling Phoenix airport. We seem to be gently descending. We have to go get the car, get to the hotel, and I have to take a hibiclens bath/shower/something. And we have to get up at four thirty in the morning to go to the hospital so I can have a surgery that has nothing to do with this little fucker cancer in my right boob.

So. I have to go think about something else now.

Then this news below arrived today. 

FINAL PATHOLOGY DIAGNOSIS
 
A) Breast, right, 3:00, stereotactic biopsy:
- Ductal carcinoma in situ (DCIS), high nuclear grade, micropapillary and flat type with calcifications and comedo necrosis
- See comment
 
B) Breast, left, 12:00, N1 cm, ultrasound guided biopsy:
- Breast tissue with apocrine metaplasia, sclerosing adenosis, usual type hyperplasia and stromal fibrosis; features suggestive of a complex sclerosing lesion (radial scar)
- Negative for atypical proliferation or malignancy
 
Pathology findings are concordant with imaging findings. Surgical and oncologic management is recommended. Findings were discussed with the patient by Amy XXXXX M.D. on 8/23/2016. She plans to attend the Breast Center Multidisciplinary clinic on Wednesday, August 31, 2017.

I went and bought myself a bottle of sparkling wine, because....what else are you gonna do.  Got cancer?  You should have sparkling wine. 

I want to give special thanks to Angie and Asmet, (and also Dr. Amy), who took excellent care of me while I laid on my stomach (and ergo, broken ribs) for the biopsy.  And Mark, who took me for huevos rancheros after, and who's rolling with this well.  And Bex.  And Sam.  And Katy.  And Kate.  And Denise, and Felecia.

I told my mother and father today.  Mom took it better than I thought.

At least I'll be on FMLA already.  It could have been a million times worse; a coworker of mine is going through stage IV with chemo right now.  It's miserable.

So.  Cheers.  Gonna ask Dr. J what happens if you shoot radiation at the pectus bars...wonder if I'll cook like a gyro, inside out.

I forgot that I had the first date for revision surgery in the blog.  We fly out next Thursday afternoon, the 25th, to report to Mayo at 0530 Friday morning.  To still likely be second case.  They want me to do another CXR, labs, blah, blah.

People keep asking if I'm okay.  And it's wonderful, and I appreciate it and I'm deeply grateful for the concern.

And I lie and tell them I'm fine.  And it will be okay.

Because very often, they ask at work and it's quite inconvenient to have my eyeliner run, and blowing my nose makes my chest hurt again and it's just a bother.  No, I don't need to "let it out."  I realize that this is what Americans do, and it's a theory to which I used to subscribe.  Nurses are used to doing this for our patients.  It's called nursing. 

But I'm not stuffing down my feelings, I'm letting them be there.  I just don't need to feed them.  That Buddha guy had some good ideas, so I selectively borrow some of them from time to time.

Yup, I'm scared.  Yup, I'm anxious.  I cleaned the hell out of parts of this house last weekend, and completely ignored others.  I bought a body pillow that I am calling my Sqworm. 

If you follow the link to the website, you'll find soothing, soft-light daytime photos of blissfully pregnant women curled up with this thing.  It's brilliant.  I can't speak to how soothing it is to a pregnant person, but I think it's awesome.  It helps my posture at night, and sleeping has been easier.

See, through this....people who only had to have this surgery crap once will tell you it took them six months to get back to sleeping on their sides (for those that were before surgery.  I've been doing it for a month.  It is occasionally really painful.  But sleeping on my back was annoying.  Now I have a sqworm.  Yes, I do have a husband that I could curl up with, but he is less bendy, and he's 98.6 degrees, which is too hot.  The cats are hot, too, and they have claws and will sometimes inexplicably jump up out of bed. 

Having pain.  Like.  Admitting it now.  The ribs hurt.  They've been hurting for about two weeks in a different way than they did before.  Yes, could be psychosomatic.  But there's clicking involved, and I've never heard of psychosomatic clicking.  And it's different clicking than the bars.  Sometimes I can actually feel a pinch from one of those broken ribs.  Not enjoyable.  I think it's my sucky posture at work, which I keep trying to do better with.  Can't wear the pectus brace, because the point of that is to improve your posture by pushing down on the lowest ribs....which is a problem if those ribs are broken.  Probably.

But three weeks ago, I was taking nothing for pain.  No ibuprofen even.  It was awesome.  Now it's daily ibupofen at some point, and even occasional oxy at night.  (Yes.  I still have some left from April.)  (And at the rate I'm taking it, I'll have a new brown jar of it before I finish the old one.)  So, yeah.  Pain is a bother.  Weirdly dizzy today too. 

I'm going to chalk that up to stress of this surgery coming, or possibly a psychotic break, and Buddhically (I think that's a word), let it simply be and not engage with it.  Kinda like that crazy or mean or divorced-from or chain-smoking family member you have to see during the holidays, but over the years, you've managed to coexist with them on the same couch...without actually having to speak with them.  I mean, everybody's got at least one of those, right?

....

Yes.  I know there's an Olympic swimmer with pectus.  This is awesome for him.  Maybe after surgery, I'll watch that sport.  (I've been watching gymnastics and synchronized swimming, which I did not know was a thing.)  Hopefully, he's doing something about educating people that pectus exists, and fantastic for him that he's an Olympic swimmer with it.

I cannot swim.  My parents put me through lessons, and everybody was all disappointed.  They watched wistfully while my childhood (and current facebook) friend Amy Heilman overachieved me in this.  (She really is a good swimmer.)  My father is a very strong swimmer and he's tried to teach me.  Owen tried.  Bex tried.  I have always blamed this physical dumbness ON my pectus, because my body is not that stupid in other ways.  I've seriously biked and hiked and been a gym rat up through my early 30s, when I started to get the pulmonary symptoms.  I never learned to swim.  I do not float.  I sink.  So. 

Probably I'll watch when I have a higher tolerance for being reminded of what I cannot do.

Don't get me wrong; everybody who's said something about it to me mentioned it out of compassion, and this is very much appreciated.  I'll watch it later though. 

God knows, I've got a whole lot more time to bond with the television coming.  Cos.  You know.  I didn't just get two months to catch up on any show I wanted to catch up on.  I've been picking at the Olympics.  Because I'm hoarding it for later, because I already went through all my Law & Orders, Orange is the New Black, Buffy the Vampire Slayer, Game of Thrones, RuPaul's Drag Race seasons 2 - 8, the Godfathers, LoTR, Hobbits, Dunes (the doofy one with Sting AND the cooler one), and most of my Godzillas (Toho only.  Duh.)  Bex had me try The Man in the High Tower, which was awesome.  That was two months of freakin Netflix. 

(Don't judge....I tried to read.  I cannot read while on MS Contin.  I just stare at the page, looking at nouns and verbs and not remembering the plot.  It's freakin horrible.  I have a house full of more books than anything else in this house. And I could not read anything.)  (I do not understand why people enjoy narcotics.)

BUT!  A bright point!  RuPaul's All Stars Season 2 starts on the 25th!!!!  *SQUEEEE*  No, really, I'm so excited.  So, one of my medical assistants, Jemaine, loves this show, too.  He's leaving us to go to another clinic and I'm sad about that, and also sad that I was thinking I'd have nobody at work to pick apart my drag queen show with....BUT!  Turns out my new nurse, Felecia, loves it too!  :D :D :D :D YAY!   (Balance in the universe is now restored.)

I don't know.  Maybe I can learn to swim now. 

So.  Next week.  Absolutely nothing to report.  Just sitting on the metaphorical couch on Christmas afternoon, coexisting next to that doppleganger of me, full of anxiety and abject terror.  Ooh...you know what would make that better?

Having a drink in my hand.  Because THAT is how one gets through those Christmases.  I'm going to stop talking now, and go fix that lack of drink in my hand.

I will update here again.  Soon enough.

So here's the blue-haired selfie.  (Perhaps I should have said Katie didn't do my whole head....sorry if that's a disappointment.)  I can't find the photos Katie sent me the day she did it.  She did cobalt blue underneath, and streaks.  This is about two weeks later.

On July 15, I got not one, but two calls from Kelly, Dr. J’s intake coordinator.  Which was exactly the type of fairly urgent response I was hoping for.  In the packet I’d mailed, I said I had questions about the CT.  I took a screenshot of the CT slice that shows the bone shard (uploaded on this page), printed it out on paper, and circled it. I wrote something on that paper like, “This seems bad.  Can we discuss?”
 
Kelly, as always, was very kind to me and set up a phone call for that following Wednesday.
 
So I was angry that I got an infection.  But infections happen with surgeries.  I’m a medical person.  I get it.  It was my stupid luck to be The Infection This Year.  Their risk department undoubtedly began investigating my case as soon as Mayo heard about the pleural effusion in early June. 
 
I have been on the other side when patients have problems.  I’ve call Risk on their behalf, to investigate and see if we can make it right.  Those situations are rare, and in my nursing career, I have seen very, very few situations that were just flat-out negligent.  Health care people didn’t go into health care because we’re evil.  We got into this to help people, not for money or glory.
 
No one likes it when your patient does badly.  No one likes to see another human being suffer.  ‘Bad’ health care providers, truly sociopathic people, are extremely few and far between.  (I only say they exist because of that one nurse I worked with last year.)  (Okay, that was more like narcissistic personality disorder instead of sociopathy, but the effect felt very similar.)  (Anyway…)
 
All but those three or four assholes per capita, when our patients feel bad, we truly feel like shit.  And we truly want to make it better for them.  Even people who are jerks, because they probably wouldn’t be jerks if they weren’t in pain.  Or dying.  Or have some fucked up disease that they caught from a mosquito, or because they lost some genetic lottery.
 
So I know nobody at Mayo did this to me on purpose.  And none of them wanted it to happen.  My complications directly screw up Dr. J’s research results (I am in her current study).  But I don’t think that’s the main point to her.  Because I don’t think she’s that person.  I don’t think her OR circulating nurse is that person.  Or her scrub tech.  Or her fellows.  Or Marianne, her clinic nurse.  Or Kelly, her intake coordinator.  Or Mike, her PA.  I pretty much think they feel how I feel when something really shitty happens to one of my patients.
 
I am angry at the infection, but I don’t have anyone I can shoot that anger at.  Because people are humans, and they make mistakes.  And we have to forgive that.  And when I remember that, that anger dissipates.  Which is good for me, too.
 
The bone poking my heart makes me angry, too.  Not because it happened.  I expected broken ribs.  I mean, maybe you didn’t watch the video, but what she did to me was violent.  That video is hard to watch.  She wrenched on my rib cage because it needed to be fixed.  I’m 44 and I am not bendy anymore.  I pretty much can’t touch my toes.  My cartilage is creaky and old.  If it weren’t for modern medicine and antibiotics, I would be considered an OLD WOMAN by now.  A saber-toothed tiger should have eaten me long before now.  I’m old.
 
But after the surgery, Dr. J came to visit me in my hospital room.  She had the happiest look on her face, dressed in greens and the first thing she said was, “We didn’t break any ribs!”  She believed that.  The chest Xray didn’t show it.  She was believing that she was a badass because she got complete correction on a 44 year old woman with a Haller of 6.7 aaaaand a twisted cartilage.  I could see it in her face.  She was really happy about how my surgery went.
 
So I’m not mad that the ribs fractured.  But we didn’t KNOW about it BEFORE I left Arizona.  Because it’s not standard to get a CT scan post, which would have showed it.  Sometimes I’m mad about that, and sometimes I understand, and forgive.  There isn’t a clinical reason to do a CT scan for most patients.
 
So.
 
That Wednesday’s conversation with her was brief.  Only because I was upset because she gave me the news I knew was coming, and didn’t want to hear.  And I don’t like to cry in front of surgeons.  So I told her I needed to talk about it with Mark.  I asked her:  If I had infinite time off, no responsibilities and if my husband had infinite time off and no responsibilities, when would you want me back?  “Within the month.”
 
So.  There is indeed a kraken in the pool. 
 
And this is, actually, bad.  I’m not wrong.  I, meaning the crazy hysterical voice in my head.
 
That was when I started to have to get off the phone.
 
So after the sobbing and runny nose and husband-texting stuff, decided, on Sam’s suggestion, that I would call the Mayo patient representative.  Some people do that because they want to sue, or blame somebody.  I want neither of those things.
 
I DON’T WANT ANOTHER BLOODY INFECTION. 
 
And I want the surgery DONE RIGHT THIS TIME. 
 
After all, we are talking about an open procedure here…a modified Ravitch.  This is precisely the surgery I did not want.  This is precisely the only surgery they do at UCH, and I would certainly have the option to stay instead of flying to Phoenix.  And believe me, it was a hard decision to make.  Mark and I did talk about staying here, in Colorado, and getting Jim to help us get an appointment with his friend and favorite cardiothoracic surgeon, who does the Ravitch.  The only good part about everything I went through with the second hospitalization was feeling like I had my very own dragons to protect me, because these are my people.  I am home, and they know me.  I am one of them, and I will be treated as such.  I know every patient wants this, and every patient deserves it.  But the reality is that not every patient is treated like my brother or sister or mom or son.
 
We’re going back because only Dr. J is going to be highly motivated to keep those bars in….and because they probably do want to make it right.
 
So while I am sure the team will take more care this time, I wanted to use the additional pressure of some of the hospital bean-counters and lawyers aware that mistakes were made last time.  The following day, I spent twenty minutes on the phone with a patient rep, telling my story.  I’ve probably been on Mayo’s Risk radar, as I said, but now I’ve had closer contact. 
 
And I want to deal with this directly with Dr. J.  I spoke with Kelly and told her that there are some non-negotiables: 
 
1) I get a CT scan post, and will review it with Dr. J.  There will be no getting on the plane without that.  I know that CT will have a lot of artifact, now that she’s putting new metal in there.  I don’t give a shit; we’re doing it.
 
2)  I get to speak to everybody that will be in the operating room about infection control.  With everybody’s full attention.  I can’t imagine it will be easy information for an OR team to hear this from a patient.  But I will bring pictures of my pleural effusion and explain to them that someone at Mayo caused it in April.  So please wash your hands again.  And nice to meet you, Scrub Tech, you’re gonna wash me double or triple the usual routine.  Thank you for taking care of me today.
 
3)  I get Dr. J’s A team.  It’s AUGUST at a TEACHING HOSPITAL.  July is when new graduates start…new fellows, new residents.  July is a shit show every year.  People die in July.  There’s studies about it; it’s a real thing.  August is only thirty days better.  I told Kelly (and I will tell the team) that I don’t want anybody who hasn’t been doing that job for at least two years to touch me.  New people can watch.  No touching.
 
If I wasn’t medical, how would I be advocated for? How would I know what to ask for?
 
There was some back and forth done through a few calls with Kelly, but Dr. J is fine with that plan.  I have another call scheduled with her Wednesday, so I can get the nitty gritty details I want about what she’s cutting where, and what she’s going to use to glue me together.  I don’t want mesh, but I don’t think she uses it.  Some newfangled thing that I know nothing about and can find out more about as I prepare for this.
 
The date for surgery is pencilled in on August 26. 
 
I’ll be booking flights this weekend.  Because.  Here we go again.