Mastectomy Ins and Outs

It’s been a month since my last post—a month that has both flown by and dragged on like a train with wooden blocks stuck under its wheels.

I’m in Week 6 and I feel much, much better. My final surgery, which exchanges the expanders for the permanent implants, will probably be in January. But for now, my aches mostly feel like regular old soreness, instead of the irritating rip-my-hair-out soreness.

My headaches are gone, which were due, we discovered, to the sudden lack of estrogen in my body from surgically-induced menopause. Once I started taking low-dose estrogen, the headaches disappeared. The vision in my left eye is still worse than it was pre-surgery, but the recommended MRI will have to wait until my exchange surgery because right now I have magnets in my body (on the expanders). And without the headaches, the vision doesn’t bother me all that much.

My sister’s mastectomy is tomorrow and it will be interesting to see the differences in how our bodies respond. I’ve given her all the advice and tips I can think of, which I’d like to list here for anyone thinking of having or about to have the surgery—namely, a prophylactic double mastectomy.

Obviously, everyone is different, which makes a post like this possibly more useless than useful. But since some of this might apply to you, it’s worth reading just so when and if some of this proves useful, you can feel less alone. (Been there, sister!)

Pre-surgery

  • If you’re lucky and have a PPO, see a couple of different doctors so you can get more than one opinion on each of the various topics related to this surgery and pick the doctor you are most comfortable with.
  • Read enough to know what to expect and make a decision, but not so much that you know every awful story that has ever happened to patients.
  • Talk with your docs about the pain management plan for the day of your surgery—this includes the 24 hours after your surgery. Read Here for what happened to me.
  • Plan to have someone stay with you the first 24 hours at the hospital, someone who can advocate for you, make sure your pain is managed, and make sure the nurses and doctors are communicating and following procedures (washing hands, for example, which one nurse told me is required both before and after putting on gloves).
  • Ask your surgeons to take photos of the surgery, if you’re interested. It’s probably the only time in your life you’ll be able to see the inside of your body. I fully realize this might not appeal to some.

Useful Stuff

  • Aquaphor—I started using this way too late. If you have any burning, this is the stuff you need.
  • Fleece with inside pockets for the drain bulbs. In fact, against my better judgment, here’s what I looked like every day:
Photo taken by my daughter just before I grabbed my phone back.

My daily outfit of cozy socks, loose pants, button-down, and fleece. Photo taken by my daughter just before I grabbed my phone back.

  • Lanyard for showers—the drain bulbs have plastic loops on them and at first I clipped one lanyard to each of them and hung the lanyards around my neck but I found it’s much easier to tie one lanyard to both tubes like this:
These are computer wires. Your drain tubes will be grosser.

These are computer wires. Your drain tubes will be grosser.

And then hang the lanyard around your neck.

  • Robe with pockets, for drying off/applying lotion after shower, so you can get the wet lanyard off your neck and dry off the bulbs in the pockets
  • Neutrogena or some other perfume-free soap—gentle on your incisions.
  • Natural shampoo/conditioner for the same reasons as above—I use Burt’s Bees. Also, using a good conditioner means you can comb your hair without using too much muscle.
  • Here’s what I had at my bedside:

IMG_3659My mom bought the masks because my daughter was sick when I got home, but they weren’t really necessary, I was on so many drugs. She also gave me the Altoids to help with mild indigestion I had one day, probably from some medication or another. The water bottle with a straw was particularly useful. That round blue thing is lip balm. Besides magazines, I read easy lit–Mindy Kaling’s book, as well as Shit My Dad Says, both given to me by my sister-in-law, Shannon. They were perfect. Advil was essential after I went off the Norco. And the hand sanitizer made it easy to wash before I applied Aquaphor (somehow not pictured here) or cleaned my drains. That’s a Doc McStuffins sticker next to the water bottle, brought to me by my daughter.

  • If you don’t have a recliner to sleep in, you’ll need plenty of pillows to prop yourself up. Body pillows on each side are good for keeping your arms up, and then when you can start to turn on your side, they’re super comfortable.

AD—After Drains: (My drains were removed at 2 weeks & 2 days post-surgery)

  • Aquaphor—a mastectomy patient’s best friend, I’m telling you
  • Tanks you don’t mind getting Aquaphor on, once you can pull a shirt over your head (I wasn’t wearing a bra at this point—I’m still not but that’s a matter of preference. My nurse said it would be fine to wear one without underwire.)
  • Cardigans—you’ve already pulled a tank top over your head; that’s enough work for one day.
  • Bandaids, for your drain holes (along with a dab of Aquaphor)
  • Melatonin—natural sleep aid. I became so sick of sleeping on my back at this point and I still couldn’t sleep on my sides.

Getting the drains out was much easier than I thought it would be, considering you have about a foot of tubing wrapping around the inside of each breast. The nurse snips the stitches and pulls and the tubes come right out. I felt a weird pressure but no pain. I did feel some bearable pain in the 2-3 hours afterward; I’m assuming this was just due to shifting among my expander and muscles.

For those who like a visual, here’s a picture of the drain tube where it entered my side, under my armpit. For those who don’t like visuals, just scroll down quickly and pretend it’s a picture of a butterfly:

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Expander Fills: (For me, these started at 3 weeks & 2 days)

  • For the first fill, my nurse took it easy on me and it wasn’t too bad. Mentally, this was a big uplifter. I’d had my first meltdown the night before, as it hit me these incredibly irritating things inside my chest weren’t going away for another two months, after all the fills and the 4-6 week period after fills to let the skin rest before the second surgery. I got this claustrophobic feeling, starting tearing up, and my husband casually said, “Take a Xanax.” I had some leftover from an overseas plane ride two years ago, so I did. I fell asleep and woke up feeling lighter and more rested.

Here’s what the “fill” tools look like:

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The nurse holds a magnet-finder over your chest until s/he finds the magnet inside you; she marks it so she knows where to insert the needle; she cleans the area, which is pretty irritating just because she’s rubbing; then she inserts the needle, which you might or might not even feel, depending how you’re healing. She’ll fill slowly and stop when you tell her the pressure is too much.

  • Aquaphor, obvi
  • Any leftover muscle relaxer meds you have from surgery. I’ve taken one on each “fill day” and it helps, as do a couple Advil.
  • Rest—naps are still helpful
  • I was told fills get harder each time—I’ve had three now and found that during the fill it is harder each time, but afterward the discomfort goes away much more quickly, though my body can’t take a lot of mL’s each time—maybe 40-50. My nurse has given as much as 120 in one fill. Obviously, the bigger you are to begin with, the more you can handle.

Week 4 — I started driving, parking on the street so I didn’t have to turn around as I reversed. I was sore but it was bearable. Still napped a lot.

Week 5 – I started to really feel better, though I went grocery shopping and couldn’t push the cart well. It was miserable, mentally and physically. It’s worth noting this was one day after a fill, so I’m sure that contributed.

Week 6 – As I said above, finally the soreness is starting to feel like regular soreness and not rip-my-hair-out soreness. I’m still on my back but can sleep on my side more comfortably. I still nap, but I don’t need to every day.

Moments that might freak you out, like they did me:

  • Any complications from surgery—those headaches and eye issues threw me for a loop those first two weeks.
  • Drains—at first I thought, No problem! I got this. But after a week they become utterly annoying. And weeks feel like months at first. (By week 6, though, it now feels like it flew by.)
  • Missing your regular level of activity—4 weeks felt like an eternity so, around that time, I decided, “Sure, I can help pick out a Christmas tree, bring up decorations from the basement, decorate the tree, play with the kids, and clean up all in one day.” The stupidity is astounding, though understandable. Please don’t do that to yourself. I could barely move. Don’t let the return of some energy give you the false idea that you can go back to regular activity.
  • You realize you have these foreign objects in your chest causing you discomfort and there’s not a damn thing you can do about it. See Xanax story above.
  • You realize you will be sleeping mostly on your back for 2-3 months. I’ve always been a stomach-sleeper, so this has been hard.
  • At one point around Week 4, I lay on the floor and tried to put my hand behind my head as a pillow but couldn’t do it. Not being able to do this simple thing made me sad. Stretching each day has increased my movement capabilities.

Alright, I’m sure there’s more, much more, but my kids are begging me to play with them, and now that I finally can, I’m going to take each chance I get.

Good luck to all, especially my sister, Katie.

Two Weeks Post Mastectomy/Hysterectomy

I’m a little over two weeks out from surgery. It’s been…a million things, and all those things are still flying around inside my head and hard to sort. I think I’ll write a future post filled with the details for those who might be interested, BRCA mutants like me. For now, though, here’s how the last two weeks have generally gone for me:

First, it was harder than I thought it would be. At one point, as I walked hunched over from my bathroom to my bed four days after surgery, I said to my sister, “I can’t fucking believe I chose to do this.”

It wasn’t the nicest thing to say to my sister, because she is following me with the same surgery next month.

Seven years ago, I had an emergency c-section—the slicing open of my abdomen after it had been constricting on and off during 13 hours of labor. That was pretty painful. My abdomen was extremely sore and bruised and it was hard to pull myself up to sitting for about three weeks.

In my head, I’d compared this surgery to that and I was oh-so-wrong. A double mastectomy is like having Alex Rodriguez take a swing at your chest with a metal bat. Seven times.

I knew the surgeon would open the breast, scoop out the cancer-susceptible flesh, and insert an expander—a sort of placeholder, since I’d chosen not to do full reconstruction at the time of the surgery.

What for some reason I did not know is that the expander is placed under the muscle. I’m fairly small-boned and small-chested, which meant the surgeon had a difficult time pulling the muscle out enough to insert the expander. My surgery ended up taking about two hours longer than usual. I can only imagine, fortunately, the slicing and pulling that was required. No wonder Alex Rodriguez came to mind afterward. (There has been almost no pain from the hysterectomy.)

After the Surgery

I’m hesitant to rip apart nurses because nurses are in my family and, mostly, nurses rock. However, 75% of the nurses working on the 3rd floor of Unnamed Hospital in Highland Park, Illinois from November 4-7 did not rock.

By, “they did not rock”, I mean:

  • I was allowed to remain in severe pain the entire first night of my stay. They had me on no medication save the morphine button in my hand, which I was allowed to push every ten minutes. But since it was, you know, 2am and the previous day I’d had major surgery, it was hard to stay awake to push the damn button. Whenever I did wake, in severe pain, I was told, “You’ve got to push the button to stay on top of the pain.” When my husband and I got angry enough, the nurse finally called the surgeon to get me more medicine.
  • Unfortunately, the same story continued the next day with a different nurse. The new medicine was prescribed to be given every six hours. But by hour four, I was in a good amount of pain. I was told, “Sorry, you need to wait two more hours.” After two rounds of this, again when we got angry enough, she called the surgeon.
  • One nurse put on gloves, typed on a computer, then came and inspected my incisions with the same gloves.
  • I told that same nurse that despite the catheter, I had the very uncomfortable feeling that I needed to pee extremely bad. She sort of shrugged and said sometimes that happens. So I endured the sharp pain in my bladder for an hour until the nurse came back, this time with another nurse. I told that nurse of the problem, she looked at the catheter, discovered it had a kink in it that was stopping all the fluid being pumped into me through an IV from exiting my body, and fixed the problem.

But possibly the most troublesome thing about the last two weeks is that I awoke from surgery with worse vision in my left eye, accompanied by severe headaches and slight nausea about every other day. We’re not sure if this is caused by the lack of hormones, the medications (I’ve tried a few), or the surgery itself. TBD.

All of this sounds like a lot of bitching. Some days, I am pissed. But most days, I’m happy to have the surgery over with. I’m thankful I had the choice to take a big step to prevent me from getting cancer. I feel grateful for the notes and flowers and pumpkin breads and soups and cookies that have been sent to my house.

And I feel deep love from my family. My whole family has been helpful—mom, dad, stepdad, sister, brother, in-laws, aunts, uncles. But there are always standouts, right? The two standouts in my story are my mother and my husband.

My mom, balancing her work bag, her change of clothes, and my daughter's laundry

My mom balancing her work bag, her change of clothes, and my daughter’s laundry

My mom has been at my house almost every day. I was out of my mind for awhile on all the narcotics, but now that I’m more with it, one of the pleasurable side effects of major surgery is that I can sort of feel like a child again. She doesn’t let me get up from my comfy chair. She takes the kids to school. She makes me breakfast. Of course, I have to chat an awful lot with her, but that’s been nice, too. (Love you, Mom.)

Every day for two weeks, my husband cleaned my drains, administered my several medications, helped me shower, brought me everything I needed, reached for all the things I couldn’t, woke with me in the night when necessary, and took care of all of our children’s needs at night and in the mornings and during some parts of the day, too, as he also worked from the dining room table. He did all of this without complaining to me one time. Not once. He never huffed or snorted or rolled his eyes or breathed deeply. He didn’t pause in rising to help me up, in retrieving Chapstick, or bringing water. It turns out there’s a lot you can’t do after a double mastectomy, and he did all of it for me.

I’m trying to think of a joke to make because that’s what we do–if it gets too serious and emotional, my family jokes. But I can’t think of one. So just a big thank you and I love you to Alex, who turned out to be the best nurse.

Alex coloring with Clara while I recovered

Alex coloring with our daughter while I recovered

Boob Voyage

I’m one week from having a double mastectomy and full hysterectomy to prevent the possibility of cancer, since I have the BRCA mutation.

At this point, I’m excited simply because I’m close to getting it over with. Looking back over the last six months, I’ve gone through a full range of emotions and I just wanna get off this roller coaster and be done with it.

Interestingly, I’m forcing myself to write this because I know writing always makes me feel better. But it’s one of the few things I actually don’t want to share on this blog. Perhaps it’s too personal, even for me. In an earlier post, I promised I’d write about it, since it’s as “true” a story as any on this site, but I haven’t felt like it.

So I’ll be quick about this (no editing!) and make a list, and hopefully, as often happens when I write, I’ll feel better. And maybe someone who is going through the same thing will read this and feel better, too.

Things of note.

  • Last week, I got my period. And I realized, “I’ll never have my period again.” And while that would often be cause for joy, it made me cry. Another thing to say goodbye to. (Other times I’ve cried include the moment it hit me that I will have no more children and the moments I’ve thought about losing parts of my body.)
  • Often-present sense of guilt that I feel this sad and emotional about my surgeries, since I don’t actually have cancer. There are groups devoted to the support of people like me, and while at first I thought that was a bit overboard, now I get it. Plus, there are other cancers I still do have to worry about, that I can’t have surgery to help prevent.
  • No, I am not excited about getting a “boob job,” since that’s not what I’m getting, not really.
  • The number of doctor appointments associated with this process is between extraordinary and extra-extraordinary.
  • For a while, I was scared about the surgery itself, more scared than I’ve ever been about anything. I “knew” I wasn’t going to make it through and that was going to be the end of me. I’ve had surgery before, but was never this scared. Fortunately, I’ve passed that phase. If my mom can have a hysterectomy, I can too. This took some mental work, a good reminder that we can change our thinking. Just picture it differently and the picture will change.
  • I’ve never doubted this is the right decision. I’ve definitely freaked out about surgery, but I would freak out even more if I had to get screened for breast and ovarian cancer every six months. As it is, I’ll have to be regularly screened for pancreatic cancer and melanoma.
  • One of the hardest things to put to words is how much I value and appreciate the love I’ve been shown by family and friends. The words “value” and “appreciate” are so ordinary. I’m almost uncomfortable with the wonderful things that have been said to me and done for me. And they remind me that while this isn’t the situation I’ve hoped for, the reality is this: I can largely do something about the shitty situation I’ve been placed in, and that isn’t the case for so very many people. On top of it, I can do something about it surrounded by people I love, and that’s not the case for some, either.

So, really, at the end of the day I feel lucky. Because out of the range of shittiness that can happen in one’s life, I’ll take this any day of the week.

My sister masterminded a surprise “Boob Voyage” party for me, which was awesome in and of itself, let alone considering she will also be having a double mastectomy, one month after me. That’s the kind of people I roll with.

Enjoy some pictures of the party, and I’ll see you on the flip side (meaning after the surgery, not after life).

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Courtesy of my mom and sister.

My mom, me, my sister, and my aunt all carry the BRCA mutation.

My mom, my sister, my aunt, and I all carry the BRCA mutation.

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A table full of some of my favorite people, in a room full of even more of my favorite people.

My husband and sister.

My husband and sister.

I'm quite touched by the number of men who came out to my Boob Voyage.

I’m quite touched by the number of men who came out to my Boob Voyage.

And finally, one of the best cards I’ve ever received, from my friends John and Michelle:

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Endnote: it took some strength for me to call this Boob Voyage, though appropriate. As some of you might remember, I don’t like certain words such as “blog” because they’re too flubbery sounding. Same goes for boobs. But Breast Voyage sounded too serious.

Meet: Overnight Shift in the ER, Part I

The following post contains sensitive content. It is based on an interview with a woman who works the overnight shift in a suburban Chicago ER.

I’m the patient access specialist, so I get all their demographics and insurance info. We see some pretty crazy stuff.

Abdominal pain is the most typical ailment. Sometimes it’s appendicitis but usually they’re just constipated. Literally full of shit. Especially kids.

People stick a lot of things up their noses, and in other crevices. We’ve had cucumbers in the anus, other things that have had to be surgically removed. They scoot around how it happened but it eventually comes out. Once an older guy came in and said he fell in the shower and the shampoo bottle went up his butt. It just doesn’t happen like that. The whole thing was in there and he couldn’t get it out. I hope it was a small one.

An 11-year-old came in once and the mom was kind of embarrassed. The little girl had stuck a Chapstick up her coochie. But they didn’t have to surgically remove it.

Speaking of, a woman came in once because she needed us to check if she already had a tampon in. She thought it got lost up there. Who does that? I mean, I would go to great lengths to not have it be the ER doc checking on that.

A 50-year-old guy broke his penis once. Did you know you could do that? I looked it up on Wikipedia—there’s no bone in there but a ligament or cartilage that can be broken. He said he knew it was broken because he heard it crack. He had to go to surgery the next morning. Don’t know how they repair that.

The hardest moments are when children die—usually traumas or drowning. One boy had a television fall on him and he died. I can still see him. It doesn’t leave you. Neither do the sounds—of the moms, the nurses. They just kept working on that one boy because the mother wouldn’t stop screaming. He was five.

There have been cases of suspected abuse but I haven’t seen them. We’ve had sexual assault victims come in but we don’t know the outcome. It’s not like you can have a CT and find out what it is. They’re hard cases.

If it’s a level 1 trauma—gunshot wounds or stabbings—they’ll go to [nearby hospital]. We do get level 1’s because they don’t know they’re level 1’s in the field. A couple jockeys from the racetrack have come in. One jockey a few years ago was knicked by another horse and he fell. His horse fell on him and paralyzed him.

One night a stabbing victim walked through the door. The guy who stabbed him drove him there—apparently, he was remorseful. It was over a girl.

I like that it’s different. I’ve been there four years and I’ve never have the same night twice.

Part II: Medicaid, homeless people, and drug seekers