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POD #13/5 months: So I'm getting that boob job I never wanted.

9/8/2016

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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?

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POD #8/135: Home, gathering

9/3/2016

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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.
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    I'm a middle aged nurse with a hole in my chest.  I created this because I'm intending to have that fixed.
    I used to paint, and now I make quilts.  But I'm not done painting.
      In addition to working full time, I am picking at a master's (though I haven't yet committed to a master's in what.)

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