Fun house mirror

Day two of radiation. The weirdest part is the “fun house” mirror. The machine has three arms that rotate as needed – one is plain and looks like it has two drawers on it; the second has a grid – 13 x 13 of black squares; and the third (directly opposite the grid arm) has a fun house mirror. The mirror is above my head as they position my body before starting treatment.

The mirror distorts everything. Things are wavy-looking; things don’t match up with where they should be. It’s really weird to look up and see my beautifully reconstructed breast appearing like a Picasso painting.

Two treatments done, 15 more to go.

The power of the bath: making a surgery decision

I rediscovered baths this week.

As a teenager, I would spend HOURS in the tub – reading, relaxing, thinking. When I went to college, there was a tub on each floor, but it was in a glorified cleaning closet that was dark and dingy and gross. I don’t know anyone who used a tub in Justin Hall. I continued to take long baths when I came home from college on breaks.

Once I was “on my own,” baths disappeared from my life. Too much to do. Too tired. Other priorities for my time. It’s unfortunate, really, since I’ve lived in places with really nice tubs.

Our first apartment in St. Louis, when Mike was in law school, had a deep claw foot tub original to the building built in the early 1900s. That tub was so flipping deep that I almost needed steps to get in. Water up to your neck. But it was short. I think I took one bath there in four years.

Our first house had a brand new whirlpool tub. I never took a bath there. Our second house had a whirlpool tub built for two. Seriously, while resting my back on one side, I couldn’t reach the other with my legs, which meant sliding down too far. I used the bath pillow as a floatation device the two times I took a bath in that house. It’s not relaxing when you’re concentrating on not drowning.

My current house has a whirlpool tub that is just right. Not too deep, not too long. Still, in three years, I never used it until Tuesday. That’s not to say it hasn’t been USED – the kids love to take baths in there since it’s deeper than the tub in their bathroom. And it has jets! And makes bubbles!

Tuesday I had my annual physical with my primary doc. During the “well woman” portion of the visit, the doctor discovered an ingrown hair (yep, my hair is S-L-O-W-L-Y growing back!) just to the left of center *down there. * It was showing signs of infection and needed to be drained.

SIDE NOTE: Everyone has an issue with a word or two, right? One of my issues is with the word gro*n, which is technically where this problem lies. See, I can’t even type the word, let alone say it…

I’ve seen a lot of docs this year, and I’ve had a lot of tests. Some of the tests and doctor pokes have been painful, some not. But NOTHING I’ve been through hurt as much as when my primary doc injected the heart of the infection with a numbing agent. Hot diggity! That shot hurt. It was all I could do not to kick her in the head or scream.

Once numb, she drained the area and gave instruction to “rest in a warm tub, with a glass of wine and a good book.”

Doctor’s orders, right?

With kids in bed and a new book in hand (no wine since my liver is still not super happy with chemo), I turned on the faucet of the tub and climbed in. I sat there for a few minutes, starting to read the book, then got out. The tub ledge was dusty, and I couldn’t relax so I cleaned it. I read a chapter or two, then went to bed. I slept pretty well, so I decided to take a bath the next night also.

This time, the tub was clean so I could relax. The book was an easy read and perfect for the bath. I read several chapters then set the book aside. I sunk lower in the tub and let the water wash over me. I allowed my hands and arms float on the surface as I closed my eyes and breathed deeply.

I don’t know how long I stayed there, concentrating on my breathing, but I was able to identify and “solve” a couple of the things that have been bothering me lately – primarily weighing my surgery options.

I know a lot of women don’t have an option, but having the choice between lumpectomy and mastectomy is almost worse. What if I make the wrong decision? If this comes back, will I always question my decision? Why can’t someone just TELL me what to do?

I always maintained that I wanted my entire breast removed, but after meeting with the radiation oncologist (who is also the head of the cancer center), I started to rethink that. All the docs have stressed that it’s my decision, but I get the feeling that they’re recommending the “breast conservation surgery” (that’s what they call lumpectomy – defining it in those three words kinda shows which way they lean, doesn’t it?).

One of the biggest benefits to the lumpectomy would be recovery time. It’s far less invasive with almost the same success rate of removing the entire breast. At this point, I just want my energy back. I want to NOT be exhausted ALL THE TIME. I want to enjoy stuff again. I want to be able to DO stuff again. And a lumpectomy will allow me to get back to “me” faster.

Of course, there are cons also. Lumpectomy means I will undergo 4-6 weeks of daily radiation. I feel a little better about radiation after talking to the radiation oncologist. Given the size of my breasts, I (probably) will not blister and burn. Fatigue is a side effect, but the doc said women who have had chemo first don’t think the tiredness is as bad as during chemo. Radiation is only 15 minutes a day, and they will make sure I have early appointments.

I still have to meet with the plastic surgeon to understand reconstruction with lumpectomy. As much as I know my breasts have served their purpose (successfully fed two babies!) and I don’t like to think of myself as overly vain or concerned about such trivial things, I really don’t want to be misshapen or have a deep dimple on my right side.

I’ll probably HAVE to take a few more baths before I commit to a surgery plan. That warm water gives me much needed clarity and decision-making power.

Still in a hospital bubble – and with a list of complaints

I checked into the ER on Friday, and I really thought I’d be home by today (Monday), but I was just informed otherwise. I had a bit of a fever last night (just over 99.5), and while my white blood count is now above 10, they want to keep me until my count is normal AND there’s no fever for at least 24 hours, maybe 48 hours. I get it, but still.. My bubble burst while keeping me within my hospital bubble (prison). (Sad face.)

I feel good today, still have a bit of a stuffy nose and cough. But I’ve completely lost my voice. A side effect of one of the powerful antibiotics is “unusual hoarseness,” and that’s the one I got. I guess it’s better than the “very bad and sometimes deadly problems have happened” side effect listed. (No, that’s it, that’s all it says, no elaboration…so I win?)

Still, I’ve been really productive, this first day of spring break. Grading is half done, well ahead of the schedule I had made for myself. And I’ve started a list of complaints (most of the first world variety) because I really haven’t complained about much and honestly, I just feel like it. May I present:

“Things I won’t miss about spring break 2015”

  • Getting tangled up in my IV cord and having to “walk” my IV pole everywhere, well, everywhere within the confines of my room since I’m discouraged from leaving these four walls. So to the bathroom, to the sink, to the desk, to the recliner, to the garbage can. And sometimes getting so close to something, only to realize I. Just. Can’t. Make. It. without backtracking to unplug the IV and starting my across-the-room trek again. (On the positive side, at least they let me move around on my own.)
  • Falling asleep JUST in time for the IV to start beeping or my vitals needing to be taken or a new nurse starting her shift. On the same thought as sleeping, hospitals have major uncomfortable beds, pillows and linens (I am a linen snob – it’s one of my few splurges, and sleeping on sandpaper-like sheets with paper-thin, way-too-small-for-the-bed blankets has been…not fun. I miss 1,000 thread count – trust me, it’s worth it.)
  • Hospital food – except the mac and cheese. Damn good mac and cheese here (but the portion is WAY too small…) God bless my friend who brought me Panera for lunch today. Panera NEVER tasted so good after days of hospital food! Thanks!!
  • Being asked “did you tinkle in the hat” or some other inane question about my urination or bowel movements. Let’s just be adults and use grown-up words. Similarly, I’m not fond of a shift neglecting to empty the “hat” –  it only forces me to internally debate if I chart my own “output” or if I let the fucker overflow.
  • A remote control that only works if one is lying prone in bed. Sometimes I want to change the channel while walking my IV to the sink – not while lying flat in bed, thankyouverymuch.
  • Having to communicate the stuff I need from home to my mom by phone – only to realize that I didn’t specify WHICH drawer or WHICH nightstand, and worrying that she may have found -ahem- stuff she didn’t need to know about. She knows I’m an adult, right? I guess cleaning my drawers and finding better hiding places for things might be on the agenda after I’m discharged. Or why bother – she probably already found things she didn’t want to think about. (Mortified face.)


Random thoughts during red devil #3

I’m really loving wearing scarves. Haven’t even touched my “cranial prosthesis” yet. Scarves are easy, comfy accessories. And I may need to stop buying new ones. After all, I *will* have hair again someday, right?! (Actually, I’ll donate the scarves and other cancer “stuff” to a local organization after I’m done, which does nothing to stop me from continuing to buy more.)


Chemo continues to be not a big deal. Yes, I’m tired and grouchy the week after chemo. And I have hot flashes and night sweats. But it could be so much worse. I’m very aware of how fortunate I am. And I feel thankful and blessed.

I fought with a tummy virus this week, though, and that was no fun. Thank goodness my mom was staying at my house because after being up all night with nasty gastro issues, there was no way I could’ve taken the kids to school on time on Thursday. Instead, I slept most of the day and did my damnedest to stay hydrated so that I could still have chemo on schedule. Luckily, my classes were either being taught by someone else or the students had group work day. I just really didn’t want dehydration or sickness to push my chemo schedule off schedule.

Blood work continues to fascinate me. From low lows one week to completely, textbook normal the next, I think I drive the nurses nuts each week as I ask them to chart it out. (They can do cool charts and graphs.) This week the doctor’s comments about how in doing included the word “awesome” about 10 times. The body is pretty freaking amazing.

Bald, part one

Less than 24 hours after hair and makeup pampering for the boudoir photos, I was bald.

The oncologist reiterated on Friday that there was a 95 percent chance my hair would go in a week. A few other breast cancer patients who underwent similar treatment confirmed that it was day 14 when the hair went. My research confirmed no hair two weeks after the first dose of chemo.

I thought I’d hang onto my hair as long as possible, maybe proactively shaving it on about day 12 (given class schedules and other activities, Wednesday afternoon seemed like a good idea).

On Saturday morning, I took a long, hot shower. Washed and conditioned my hair. Ran my fingers through to detangle. I noticed some hair near the drain and moved it with my toes. More hair came up from the drain. Soon there was a pretty decent pile of dark brown curls in the corner of my shower. I got out.

I applied the leave-in conditioner; curl tonic, and styling crème to my hair. I felt the diffuser massage my scalp as I dried my hair upside down. For the first time ever, the diffuser kind of annoyed me. My scalp seemed tender. I finished with anti-frizz gel and hairspray.

I made a decision.

I drove to the salon to pick up my “cranial prosthesis.” Wendy was helping with a wig fitting, so I waited. The salon is nice. Nothing fancy. A small town hair place where older women get their weekly wash and style. Maybe some families have always gone there and continue going there with their kids and grandkids. It’s clean, comfortable. But there’s absolutely nothing fancy about it.

I talked to Carlie, one of the other stylists, who was working on the hair of a girl who looked like she was in high school. Carlie’s young daughter and her friend ran in and out of the room, playing with dolls and talking about shows on Nickelodeon. I played with my new wigs and tried on some hats.

When Wendy was finished, she helped me adjust the wigs to fit my head. “Do you have time today to cut my hair?” I asked her.

She asked if I wanted to go into a private room. I declined. I was sitting in an old hair styling chair. The yellow leather cracked. I just wanted to get it done with.

Wendy put a black cape over my shoulders. She ran her fingers through my curls. “I’m not really sure where to start. Can I cut it first, then shave?”

“You’re the expert,” I said.

Carlie recommended I take photos as it was being done. She handed me my phone from my jacket.

Wendy started cutting from the back. Snip, snip, snip. I could “feel” about three inches fall off. I swear I could hear it hit the ground. She continued, then placed her hand on my shoulder, “Are you okay?”

“Just keep going,” I said, taking photos. I was okay. I was in charge. This was my choice, not the chemo’s.

When my hair was about two inches long all the way around, she stopped to get the clippers. I started laughing to myself. “What if all this is a dream?” I thought. “What if I really don’t have cancer? What if the tests were wrong? Mixed up in the lab? I’m having my freaking head shaved, and maybe this isn’t real.”

The buzz of the clippers brought me back to reality. The blades felt warm, almost hot against my skin. She started in the back and moved to the sides. I realized that she was cutting it super short. I guess I thought it would be more “buzzed” cut than almost to the skin. Not leaving a half or a quarter inch of hair, but just a little but of stubble. But it was too late.

When she got to the top of my head, I asked her to leave a mohawk. “When else am I ever going to have one? I think the kids will laugh,” I thought. She cut and clipped my hair into one, but it looked way too harsh, so I had her cut it off, too. As the last few swipes of the clippers made their way across my head, Carlie stopped cutting the high schooler’s hair. “You look real pretty,” she said, smiling. “Really you do.” Her voice was soft, her eyes kind, and I knew she meant it. I started to cry for the first time through the whole cut. Little tears, but enough I had to stop and wipe my eyes.

I was adjusting to the image before me when the high school girl’s mom came in. She, too, was bald. Not because of cancer, but because she’s just crazy. “Bald is beautiful, baby!” she screamed, removing her pink knitted hat. Then she talked about kicking someone ass because they were taking too long in the tanning bed.

I tried on my wigs without hair underneath and made some adjustments to tightness. “You look real nice,” the crazy bald woman said. “You look pretty with or without that wig. I hope you’re going to be okay.”

Wendy rang up my purchases – two wigs, a wig cap (may or may not be necessary to help with any itchiness of the cranial prosthesis), and a brush (yeah, with curls, I didn’t own a brush that wasn’t full of the kids’ hair).

The salon wasn’t my usual hair place. But I was made to feel comfortable there through the whole process. Wendy and Carlie were very nice. Wendy spent more than 2.5 hours with me over the course of the week – from the fitting to the shaving to wigs 101, and the entire process was free of charge. I felt bad. At this kind of salon, with this kind of clientele, these ladies aren’t making much. I left Wendy a nice tip. She cried and hugged me. I cried and hugged her back. Then I drove home.

Going, going, gone.

Going, going, gone.