So follow-up visit with the surgeon today!

No bad news (yet) and plenty of good news.

Good news–my cancer is early stage (1b); the three lymph nodes that were taken are all negative, meaning it definitely hasn’t spread; the left side also is negative.

(Possible) bad news–apparently my cancer is a little weird, so they are doing a few more tests, the results of which we will find out whenever I meet with the medical oncologist, possibly as far away as two weeks.  Treatment won’t be precisely determined until after these tests, so chemotherapy is not off the table yet, and I won’t know for a little while.

While I was hoping to learn everything today, I was fully prepared to find out that a lot was going to be up to the oncologist.  What I was terrified of was being told that it is way worse than they suspected, spread to the lymph nodes, and I would spend, not just the summer, but the entire rest of the year dealing with this.

Also in the good news column, I got the left drain out.  The right side is almost almost there, so, barring something odd happening over the weekend, I should certainly get it out on Monday.  Y’all getting these drains out will seriously improve my quality of life soooo much.  I haven’t been able to cuddle with the dogs, or really even get too close to them if they aren’t asleep, because of fear they would accidentally snag one of the tubes in a paw.  I haven’t been able to sleep on my side because of the drains.  Showering with the drains is an annoyance.  Recording the amounts three times a day is getting really old, not to mention the cool-science factor has worn off and now it’s just fucking gross.  If the tube gets bumped (so if I move), it shoots a rocket of pain up my side.  Can’t wait for this aspect to be over.

So I’m getting there.  One drain out, one to go.  Good news from pathology.  Surgeon happy with how everything is healing.  My range of motion is improving daily (I drove today for the first time since before surgery–put it off, not because of taking narcotics, but because I couldn’t really hold my arms out).  After Wednesday of next week, two-week mark, I shouldn’t have to limit myself nearly as much as I have to currently.  And now, knowing that my cancer is officially Stage Early removes a huge source of anxiety.

Kind of a monumental day.

Sunday is laundry and plant watering day.  After sitting around the majority of the past two days, I decided that today was a good day to do a little bit more around the house and see what happens.  What happens=1)how good/bad I feel 2)how much extra I record from the drains.

So about the drain thing (can’t remember what I’ve mentioned already and I’m not gonna go back right now and double check).  I can get the drains out when I’ve recorded <25ml for two days in a row.  I would love to get these motherfuckers removed on Thursday when we meet with Dr Berry, so that means Tuesday and Wednesday I need to be down to no more than 25-30ml.  My output has been decreased slowly but steadily.  This morning I was 10 on the left side and 12 on the right (this is after recording like 80 on the right side the total day after surgery, so huge decrease overall).  The feeling is that if I overdo it, my body will tell me to FUCKOFF and the way that is expressed is measured by the stuff that comes out in the drains.

So I figured I would water plants and sort laundry in the morning and see what the afternoon drain recording looked like.  I was careful not to carry the heavy planters after they were full of water and not carry the laundry baskets to the basement (Hello Useful Husband Person!).  Also we took the dogs on a short walk this morning, with me holding Camp’s leash (Camp, for all his faults, doesn’t pull on leash that bad) for part of the time.

All in all, quite a big increase in activity level for me compared to Friday and Saturday.  And my mid-day drain readings hadn’t exploded!  In fact they were the same, 10 on the left and 12 on the right.  And I feel good!*  I can straighten my back more–doesn’t feel quite as constricted and I haven’t had a pain pill since Friday night.  And I went to the bathroom!  Not the Epic Shit I was hoping for, but not half bad considering the narcotic-pill-constipation-nightmare scenario I had read about.

*”good” is a relative term

So yeah, all in all, a bang-up day.  I upped my activity level, made myself useful around the house, felt good physically, drain levels were not adversely affected, stayed off pain pills, went poop.

A friend from Dance Mom** days came over for a visit this afternoon.  She brought us dinner (ingredients to make Korean Beef Bowls, excellent, will share recipe) and we had a lovely time catching up.  It’s good to have people checking on me, but also to function socially like a normal human.  I had a shitty thing happen, I appreciate everyone’s consideration and kindness, but I’m still me and we can still laugh and bitch about our daughters and our dogs and our parents and us, getting old.

**Scout was an Irish Dancer for 13 years.  The dancers and dance parents we met during that time are some of the best people I know.

It was good to feel more normal today.

Yesterday, Day One, was kind of a breeze.

I felt good, moved around a lot, got better at emptying the drains.  Just basically happy that I was not in a ton of pain and the pain pills weren’t making my stomach ill or me too loopy.  In a good place.

Today, or at least this morning, was a different story.

First, I decided that, even though I physically felt fine, I probably did too much yesterday.  I spent most of the day seated in the big blue-grey arm chair and reached over to the table next to me for my laptop, my water bottle, my knitting several dozen times with my right arm.  My right side is the side that had the lymph nodes taken out, the side I should be extra careful with.  Today I decided to do less of that stuff.

So I settled on the couch where I wouldn’t have to do much reaching.  Then I got paranoid that I already done fucked it up.  Then I started thinking about the pathologist report, and the fear of bad results that I thought I had pushed into the darkest corner of the furthest closet of my brain came crawling back front and center.  Then I got paranoid that the ring I put on my right hand was getting tight (swelling in the arm and hand is a warning sign of lymphedema, something I am legit terrified of).  So I stood up and tried to do some deep breathing, my first line of defense when feeling agitated, but my chest was too tight because of the swelling around the incisions.  I couldn’t really even straighten up all the way, much less take cleansing breaths.  So, logically, I got paranoid that the swelling was a seroma (oh the terms you learn while perusing breast cancer fora!), which I totally deserved because of all the reaching I had done yesterday.

So there is the map of my trip down anxiety lane.  It wasn’t a full-blown panic attack, just a constant drip of industrial-strength unease that I couldn’t quite shake myself free from.  I turned to Dr Google to see if anxiety was a side-effect of the pain pills, and sure enough, there it was on the list in between drowsiness and dizziness.  NO MORE PAIN PILLS  I can live with some pain.  Anxiety, no thank you.

I was alone for a couple hours (Stuart at the Y and Scout at work), and maybe that had something to do with my little angst spiral.  I also had at the back of my mind that I would have to take a shower today (doctor’s orders–I have to disinfect the incisions with hibiclens daily, starting today).  I hadn’t been topless since surgery day.  I hadn’t yet been confronted with the reality of my new look.  The word dread was not too far off the mark to describe the level of anticipation.

Well, Stuart came home and things quickly improved.  Once I had someone to listen to the litany of things with which my brain was torturing me, I felt a lot better.  The adage “you’ll feel better if you talk about it” could be my catchphrase, despite having grown up in the midwest, where the bar on what is considered oversharing is rather low.  Stuart had lunch, then we emptied the drains and it was shower time.

To say Shit’s Fucked Up does not do justice to the horrorshow that is my torso.

The incision wounds are long, stretching from a couple inches below each armpit to almost touch at the middle.  Like a thin, ridged red rope attached to my skin, the graceful arcs at odds with the violent smallness of my now-flat chest.  And the bruising!  I know that having surgery is no walk in the park, that removing body parts is not a gentle endeavor.  But damn.  Still shocking.

And then there are the drains.  One on each side, the tubing starts at the wounds and runs visibly under the skin, to exit my body several inches below.  It is absolutely one of the wildest, most gruesome things I’ve ever encountered outside science fiction movies, and strangely, I got a lot of comfort from seeing it.  The drains are probably the most painful part of my post-surgery world, and seeing them, doing their job of removing fluids from my healing body, gave me a way to make a bit of peace with the whole thing.  I was also relieved to see that the swelling was nowhere near what I was imagining and apart from the bruises, my skin was normal, non-fevered skin color.

Stuart used the word “badass” to describe my chest.  Not feeling the badassery yet, I haven’t settled on a word.  I’m rejecting maimed, broken, mangled.  I am none of those.  Maybe altered, adapted, transformed.  Those could work.

After the shower, which, given my lack of range of motion, was rather unsatisfying (Stuart had to shampoo my stupidlong hair with me kneeling in the tub I KNEW I SHOULD HAVE GOTTEN A HAIRCUT), we ran a couple errands together.  It was nice to get out of the house.

The first stop was to get my piercing jewelry put back in (I fixed my five lobe earrings shortly after we got back from the hospital).  I have a double eyebrow, triple industrial, and triple forward helix, none of which I would even attempt to do on my own.  The parts are way too small for my old lady eyes.  Once those were back where they belonged, I continued to feel better.  My face had looked vulnerable, almost naked without my piercing jewelry.  Having it back in, well maybe still not a badass, I do feel more like myself.

So the day that started as a shit sundae, ended up being pretty good.  We finally tried a Mediterranean restaurant that’s a recent addition to the neighborhood.  The food was great and now we’ve got a new place to grab carry-out on those dinner-ain’t-happening days.  I’ve got a couple friends coming for a visit soon.  Also, it’s been fourteen hours since I took anything for the pain, and not only am I not in agony, I feel fine (fine being relative of course).  Hopefully this means that my ride on the Anxiety Express this morning was a one-off.  Or least until I can take deep breaths and go for a nice long walk with the dogs, the best medicine I know.

I guess yesterday went exactly as planned.  I left the house with breasts and I returned seven and a half hours later without.  And, not to miss the whole point of yesterday, I left the house with a tumor and returned *hopefully* with no cancer anywhere.

I had my phone alarm set for 4:50am.  Plenty of time to shower with hibiclens, take a couple topless photos, put on clean clothes, and get out the door at 5:20.  Of course I woke up way before that, like 4:30, but it was kinda of nice to take my time slowing clearing my head and preparing mentally instead being jolted by the alarm.  Stuart took care of the dogs while I got ready, then I said goodbye to Scout, and away we went.

Bardstown Road (one of the busiest streets in Louisville and the main corridor from our neighborhood to downtown) is deader than dead at 5:25 on a Wednesday morning.  We were the only car on the road, which was weird and nice.  Such an out-of-the-ordinary thing as going to get one’s breasts cut off deserved a bizarre backdrop.  We made it to Norton Pavilion in plenty of time to park and get to the surgery reception area by 5:45.

After being herded through a couple different waiting rooms, I was brought to pre-surgery.  Because I am a woman under 55 with a functioning uterus, I am less of a person and more of a Potentially Pregnant Person, so I had to pee in a cup.  Whatever.  From that point it was hospital gown, non-skid booties, hair covering, and gurney.  Blood oxygen, blood pressure, IV, and blood glucose.  Apparently I have tiny little baby veins, because Ann The Nurse had to get a child-size needle to use on me.

Then Stuart was brought in so he could be bored in a new room.  In fairness, he did not say he was bored or act bored.  And there wasn’t that much waiting around.  Dr Ye The Anesthesiologist came in and told me all about what would happen on his end and answered my questions. I should probably mention that all the doctors and nurses I came in contact with were great.  Super sympathetic, non-condescending (can’t overstate how important that particular point is), reassuring.  He also put an anti-nausea scopolamine sticker on my neck.

Leesa The Nurse Navigator came in with a pink tote bag.  In the bag were a pink folder with written instructions for everything, measurement cups for emptying the Jackson-Pratt drains, a bottle of hibiclens, a pink physical therapy ball, a couple non-pink pillows (I think these were for the car ride home to put between my chest and the seat belt), a camisole with interior pockets to put the drains, and a couple fanny packs.  The fanny packs are black with pink writing.  They are where I put the drains when I take a shower.  The camisole, also not pink, came with prosthetic breast pads.  Leesa went over all the after-care–how to empty the drains and record the output, when and how to shower, when and how to do exercises, warning signs that shit’s going south, admonition not to lift anything heavier than five pounds and not to let the drain sites get wet under the clear bandage thing.  The second point includes not getting sweaty, so I have to give up my morning five mile dog walk for a little while.

Then my surgeon, Dr Berry, came in and went over everything she was going to do.  She said after the surgery I could do all my normal daily activities, just no heavy lifting and to do everything slowly.  This was very different than the impression I got from the internet, where it seemed like no one was allowed to do anything during their recovery.  No hair washing, no reaching, no showering, no housework.  I’m glad I don’t have to abide by those strict instructions, because I’m quite sure my compliance would be out the door after a couple hours.  As my sister said to me this morning, we are our father’s daughters.

And that was it!  Time to get the party started.  The anesthesiologist’s assistant put something into my IV to help me relax.  I was already pretty chill and not too scared, but damn whatever that was made me give zero shits.  My field of fucks was barren.  Stuart gave me a kiss and I was wheeled off to the operating room.  I remember seeing a friend who is an orthopedic surgeon in the hallway.  I remember that the operating room was very big and full of medical-y, technology stuff.  I remember them putting my arms on arm rests and strapping them down.  And that’s it.

The next thing I was in a new room and feeling pretty horrible.  Very weak, very sleepy, sore throat, dry mouth, just generally rotten.  I asked Josie The Nurse for some water and she gave me a cup of ice with a spoon.  Better than nothing!  Josie took my vitals and told me I was doing great.  I didn’t feel great, but I was definitely happy that I woke up.  I attempted some small talk, but I can’t recall how successful I was.  I do remember that Josie was very nice.  I was in that room for a half hour or so then moved to a new room in the same area as the first room I was in.

Whitney The Nurse took my vitals, asked me how I was doing, asked about my pain.  Stuart was brought back in.  He told me Dr Berry said everything went great–she took two or three lymph nodes (I was afraid she would have to take a bunch) and I should be pleased with how flat she was able to get the scars (I told her of my plan to get a big ol’ chest piece eventually).  Also she was able to avoid cutting into the crescent moon tattoo I have on the upper left part of my chest.  Stuart said that he saw our orthopedist friend who told him that Dr Berry was the best and I was in good hands.

Stuart helped me get dressed, and damn did I need help.  I could barely stand.  We are not stupid people, but we could not figure out how to work the camisole with the built-in drain storage.  Thank god for the nurses!  Whitney emptied the drains so we could see how it was done.  It hurt like fuck.  I was planning on waiting to take a pain pill until we got home, but that changed my mind.  She gave me a single dose of what was waiting for me at CVS and a package of crackers.  The pill was divine.  The crackers, because of the dry mouth, were nasty, like eating paste.

So the weirdest thing about this whole hospital experience was how quickly I was sent home.  Don’t get me wrong!  I had absolutely no desire to be in the hospital one second longer than I needed to be.  I was beyond relieved when the surgeon told me it would be outpatient.  But I definitely got the feeling that we were being hustled out the door.  Like we were at a restaurant that wanted to turn tables.  The nurse said “take as long as you need!” and then five minutes later “here’s the wheel chair, where are you parked?”  I guess it was just weird because I felt so awfully bad and sick.  And so so weak and woozy.

We made it home just fine.  Stuart got me settled into a comfy chair and left to get my prescription.  Scout cut up an apple for me, but I couldn’t really swallow it without drinking water.  Like my throat wasn’t working or something.  I got really paranoid about choking.  Then I fell asleep.

When I woke up, I was a brand new person.  My throat worked as it was supposed to and, though my chest was sore, I felt perfectly normal.  No weakness, no feeling like I had gotten hit by a truck.  A dear friend stopped by to drop off a gift (patio tomato plant) and I think she was a bit surprised to see me up and lucid.  I have to say, I am very glad I’m dwelling on the easy end of the Recovering From General Anesthesia bell curve than the other end.  I read a few too many horror stories about vomiting and crying uncontrollably and feeling lousy for days and days.

So now I’m just trying to take it easy and rest more than I think I need.  I don’t want to overdo it, because I want these wretched drains out as soon as possible.  I just need some good distractions, to keep me from getting up and doing too much and to keep me from dwelling on what the pathologist report could say.  I will find out that in a week.

Reconstruction was not something I ever considered, so there’s not a long decision-making process, details of battling pros and cons, hours of introspection regarding body image and feminity, to talk about.

Simply, I love my chest and I will be sad to see my shape change, but, like I said in the previous post, I want this to be it.  Done.  No more surgery.

Breast reconstruction involves placing tissue expanders under the muscle of the chest and slowly filling them, over months, to create spaces.  Then another surgery is performed to put the actual implants in.  I’ve been told the process is painful, and it definitely lengthens the post-mastectomy recovery time.  Sometimes they can use tissue from the woman’s own abdomen or back, but again, ever more surgery.

Also there is a greater risk of infection, no guarantee that they will look like I want, and they, silicone or saline implants, have to be replaced eventually–sometimes as early as ten years.

I will look different in clothes.  That’s okay.  I’m not that busty anyway and societal expectations of how “real” women are supposed to look have never mattered that much to me.  I can put some padding in a bra if I really want my appearance to resemble how I look today.  Obviously in a bathing suit at the swimming pool will be a different story, but I think anyone who happens to notice will stare for a second, then carry on with their lives.  I’ll be judged a cancer survivor or someone with a really small bust.  If anyone thinks my body looks freakish, unwomanly, discomfiting, or weird, that is their opinion, their narrowness, and it will literally not mean a fucking thing to me.

I will look different naked.  That makes me sad.  But sad and flat and cancer-free is going to be okay.  Eventually I’ll be less sad.  And if I stay cancer-free, I will be very happy.

Then when I’m healed and the scars are less angry, I’m going to get a killer chest tattoo.

A couple days ago we met with the breast surgeon.

Nothing really unexpected.  The surgeon, whom I loved, said she thought it probable that there is more going on that just DCIS.  Could be Stage 1, could be Stage 2.

In order for her to be able to do a lumpectomy, they would first have to do MRIs and more biopsies, then see if they can use chemotherapy to shrink the tumor.  As it is, to get out the tumor and 1cm margins all around, the amount taken would be between golf ball and tennis ball size.  Basically half of my whole breast.

So I said FUCK IT TAKE THE WHOLE THING NOW AND WHILE YOU’RE AT IT TAKE THE OTHER ONE TOO

One may wonder, why take the healthy breast?  Well, it’s healthy…for now.  And they aren’t 100% sure it is healthy.  Apparently I have “dense” breasts that don’t show up real great on the usual images.  Maybe they missed something super small, something they would find on the MRI.  I don’t quite trust my body like I used to.  Lots of numbers of survival rates and likelihood of the other side developing cancer and that mastectomy is not a get-out-of-jail-free card.  And I get it.  It’s not even that the idea of asymmetry bothers me (I’m not getting reconstruction, but that’s a subject for a whole ‘nother post).  But I don’t want to have this again.  I don’t want to be worried about having this again.

So double mastectomy with sentinel node biopsy.  The second part refers to taking a couple lymph nodes to be totally sure the cancer hasn’t spread beyond the breast.

And that brings me to my fears.

I’m not happy to be getting surgery.  I’d far prefer not to be on this path.  I’m afraid of so much–the general anesthesia, making the wrong decision, being cut open, losing a part of my body, pain, long recovery.

But my biggest fear, the one that makes my heart pound and my stomach drop, is what the pathology report will say.  I want it to say “it was dcis after all!” or “stage 1 and clear lymph nodes!”.  I’m scared shitless that the news will be worse.  It’s already been clearly stated that hormone-blocking drugs will be strongly recommended.  I’m afraid that chemotherapy will also be in my future.

When I first had the mammogram and ultrasound, the doctor said “10-15% chance of cancer; 90% probably not”.  Then “okay it’s cancer but stage 0”.  Now it could be Stage 2.  I kinda feel like I’m given shit news–but Look! Silver Lining!  Then the silver lining turns out to have been an illusion the whole time.  I’m not mad at the doctors, at all.  This stuff is hard and there is no perfect test.  But damn.

I want so much for the surgery to be it.  It’s over, back to your regularly scheduled program.  Back to your normal life, except now with fewer curves.  I’m afraid that I will need more treatments and more testing and more procedures and more doctors.  More cancer.

But one step at a time.  This week’s step was meeting with the breast surgeon.  Next step is surgery and getting this thing, this malignancy out of my body.  Originally we had a date set for about 3 weeks from now, but there was a cancellation and I, not looking forward to waiting more multiple weeks, took the opportunity to move it up.  Wednesday 23 May is the day.

So I’ve known for a week now, but I suppose this really starts back in February when I first noticed a lump.

Definitely weird, definitely new.  I had just a few days before made a new patient appointment with a primary care doctor (finding a pcp who takes my insurance and new patients wasn’t easy), the first available, which was at the end of April.  I didn’t know if I could call and say “well I’m not your patient yet, but…” so I just decided to wait until the scheduled appointment.  Perhaps I should have gone straight to Planned Parenthood and said “hook me up with a mammogram!” but I didn’t and I hope that wasn’t a mistake.

The lump is biggish, on the right side, toward the top.  It didn’t set off too many alarms bells, mostly because I have had bumps and lumps that come and go, mostly on the monthly basis.  This one didn’t seem too interested in going, but, as suddenly as it appeared, it didn’t seem to be getting any bigger.

I told Stuart and no one else.

So Friday 27 April rolled around and yay! appointment!  Loved the new doctor.  She was patient, thorough, friendly, professional.  The kind of doctor you trust.  And she didn’t give me any grief that I recently turned 48 and hadn’t had a mammogram yet even though I have a sister who had had a double mastectomy and we’ll just get you scheduled for that and oh by the way…I think I felt a lump.  So she checks and oh, yes that’s a lump and I think we will get you in for a mammogram today.  Hit the panic button.

Go straight to the Norton Breast Care Clinic.  Mammogram, ultrasound.  3cm lump, biopsy ordered.  The following Wednesday.

I told a few people, mostly people I knew who had already had a biopsy, just to find out how bad the procedure is etc.  No big deal, over before you know it, the wait for the results is the worst part.

And they were right!  The biopsy wasn’t something I’d like to do again, but honestly I’ve had worse experiences in the dentist’s chair (and I have a great, gentle dentist).  That was Wednesday of last week.  I was told that the results could take as little as two days, so I was hoping that I’d get a phone call on Friday telling me that the lump was benign and I was all clear to enjoy Kentucky Derby Weekend.

The call did come on Friday.  I was 100% expecting to be told it was benign.  Instead I was told I have cancer.

Stuart and I were actually sitting in a movie theater, about five minutes from Infinity War starting.  Y’all we had been waiting soooo long to see this.  I was scrolling twitter, trying not to focus on the dumb fucking ads they force on movie goers, when the phone vibrated.  I answered of course, because this was the call that would tell me that my life would resume as usual.

My doctor was the one to make the call and she was super awesome–really really kind.  Because I was totally in shock, I told her I’d be in after the movie to discuss the test results.  Two seconds after I got off the phone, I knew I wouldn’t be able to sit there, so I asked Stuart for his keys so I could walk home and get in the house.  I guess he was in shock too because he started to take his keys out of his pocket.  Two seconds later he said he couldn’t sit there either, so we left together.

The walk home was surreal.  It was Kentucky Oaks, kind of a pre-Derby for those unfamiliar, so everywhere, everyone was celebrating.  Stuart was saying the right things “we’ll get through this” and I was still floored.  You see, I never ever ever thought this would be me.  I’ve never had any medical issues.  Every test, negative.  Every measurement, normal.  No menstrual problems, easy childbirth.  Rarely get sick and get better quickly when I do.  No allergies, at least not like everyone else who lives in the pollen-drenched-hellhole Ohio River Valley.  I’m active, healthy diet .  Sure, I could stand to get more sleep and drink less booze, but cancer?  Never!

Once home, I looked at my electronic medical chart.  The biopsy result was ductal carcinoma in situ, exactly what my sister had five or six years ago.  Apparently this is the least worse scenario.  Nothing has spread outside the duct.  Noninvasive is a good word.  Lots of other words I didn’t understand, but I latched on to noninvasive like a life-line.

So we went back to my doctor (ironically her office is right next to the movie theater).  She was super awesome again, going over all the words, those I understood and didn’t understand.  She let me ask the questions and listened when I told her how “nothing bad ever happens to me so this is kind of new territory” and vent about health insurance.  She told me her office would get me scheduled asap with a breast surgeon.  She also said that nothing I did over Derby would affect my diagnosis, and I should enjoy myself.

It was  not a joyful Derby.  Lots of rain for the city and lots of worry for me.  We went to a party, and I’m glad.  Good food, good people.  I told a few friends, and drank a lot of bourbon.

And now I wait.  My appointment with the surgeon is next Tuesday.  I will find out what my options are and hopefully get some reassurance–the doctor who did the biopsy later made a note in my records that there is concern for underlying invasive component that was not present in the sampled cores.

I haven’t done anything with this blog in years, literally.

And I always meant to get back here and post about all the things I’d been writing, knitting, sewing, doing.  The fact that I haven’t come back doesn’t necessarily mean I haven’t been writing or knitting or sewing or having a fabulous time.  I guess it just meant that I didn’t want to write about writing or knitting or sewing or anything else.

But now that I have cancer, I guess I should have a cancer blog.  Because even though I don’t want to be writing about this, I really should.