Cancer update: reconstruction and a bone scan

While I was diagnosed as cancer-free in September, cancer stuff will never completely go away. One of the PAs in the Cancer Center met with me a few months ago to outline my long-term plan: mammograms and ultrasounds every six months for five years, then annually after that; appointment plans with oncologists (every three months for a year, then six months for two years, then annually), radiation docs (every six months), breast surgeon (every six months for a year, then annually), and plastic surgeon; and my final surgery.

I had my final surgery during spring break last month. This time to reconstruct the left breast to match the right one. I had to wait six months after radiation before I could have reconstruction, which meant eight months (surgery was in July, then waiting period, radiation, and another waiting period) of two completely different breasts. The new right breast was perky and sat high on my chest. The left breast showed signs of my 40+ years and the tolls of gravity. There was more than an inch difference in nipple placement, and because of areola resizing, the left was twice as big as the right.

Since June, I’ve worn a “regular” (nonsurgical) bra only a handful of times. I had to lift up the left side to try to get it to look like the right. I used breast inserts to try to get the shapes to match. It always started out okay, but within a few hours, gravity won, the inserts shifted and everything looked lopsided, lumpy and weird.

Reconstruction surgery went well. It’ll be another month or so until everything settles, but I’m pretty close to “matching.” I’ve retired the scarves and asymmetrical necklines that have helped mask the difference. And the scars are very faint already.

Unfortunately, in follow up with my oncologist over the last few months, my blood work has shown some abnormalities indicating a concern about my liver. Levels of certain liver-function/enzyme tests were elevated. Between October and February, four of the five liver tests were elevated. By April, one test was one point higher than the normal range, but a second test (ALP levels) just kept getting higher in the five times my blood has been tested since October. It wasn’t at “dangerous” levels, but my oncologist was “mildly concerned.” He ordered a bone scan, since this particular enzyme could be indicative of something wrong with the bones as well as the liver (since the other liver tests were closer to normal, concern shifted to my bones).

So I was injected with a radioactive tracer, sent away for three hours for it to collect in my bones, and returned to lay on a table for two hours while a machine took images of my skeletal system.

I could tell what part of my body was being imaged by the questions the tech asked:

Have you ever broken a bone in your arm? Yes, my wrist when I was like 11 or 12.

Have you had issues with your hips? Yes, I was born with hip dysplasia.

Which hip? Both hips.

Have you ever had spinal issues? Yes, I was diagnosed with an S curve in my spine and treated for scoliosis from elementary school through high school.

(Side note: after 18 months of all kinds of medical tests, hospital stays, and doctor visits, anything that requires minimal invasion and just laying on my back listening to music WINS. Bone scan = not bad, perhaps among my favorite tests of 2014-2016.)

The results came back a few days later – all clean, no issues. With lack of any other areas of concern, we’re now working on the assumption that I have naturally high ALP. Or I’m growing.

Otherwise, I’m feeling great. Work on my stamina continues, after a four week hiatus post-surgery. After being fairly non-active for the last 18 months, it’s a pretty big hurdle.

That time I confronted a stranger who assumed I was a man

I’m shaking as I type this. I’m angry. I’m embarrassed. And I’m a little nervous about the confrontation I just had.

Background: My hair is growing back, but it’s in a really awkward stage. It’s no longer “Oh, look how cute! Little hair!” And it’s not long enough to do anything with. It’s just…there. I’ve overcompensated lately by dressing more girly than normal – dresses or skirts, soft colors, scarves, makeup, jewelry – things that scream “GIRL!” Or so I thought.

I was standing in line at the sandwich place in the food court of the Union. It was pretty busy, but I was hungry and sometimes this place has a decent sandwich. I stood there in my jeans (rolled at the ankles to expose cute black flats) and white t-shirt with a ballerina in a mixed-medium lace skirt. I wore red lipstick. I carried a bright pink purse and checked Facebook on my phone covered in a bright pink and gray case. A pink Fitbit on one wrist, and a delicate purple stone and silver ring on the other hand.

Do I look like a fucking man?!

Do I look like a fucking man?!

I placed my order at the counter, and then the student worker called, “Next!”

The older man behind me said, “Did you get this man’s order?” and pointed in my direction. At this point I was looking directly at him.

“You mean HER order?” the student worker corrected.

“Yeah, his order,” the guy said again. Then looked me in the eye and said, “Oh, HER’S…” It was a condescending, sing-songy tone.

He patronizingly patted my left shoulder twice. I looked away.

I was seething. My eyes started to get liquidy (not tears, but I tend to leak from the eyes when very angry). Do I say something? Do I let it go? I played a couple of scenarios in my head, a few things I’d like to say. The kind of things you think about but you know you won’t really say aloud.

I was stuck. This guy was an older white man, dressed in a suit coat and tie. I work at a university, and dress code is usually pretty casual, except for administrators (most of whom are older white men). Do I dare jeopardize myself, and possibly my job, by saying something?

I started to shake.

I grabbed a drink from the cooler and made my way to the cashier. After paying her, I realized the guy was behind me. And I realized that I was really pissed.

“Hey,” I said, looking him right in the eye. “You called me a man back there. Referred to me as a ‘him.’”

“Sorry, I wasn’t looking. Your hair…” he said, his eyes wide.

“Yeah,” I pointed to my head. “This is called breast cancer. Six months of chemo, 17 radiation treatments, and surgery. I’m a women, god-dammit, regardless of what my appearance might suggest.”

“I’m…I’m sorry,” he said again, looking down.

“Just do me a favor. Maybe you should LOOK next time. Really look.”

I turned and walked away, out of the Union, back to my building, into the elevator, and to my office.

I don’t know who that dude was, and know what? I’m not sure I’d change a thing if I DID know who he was.

Now, I’m going to enjoy my lunch before my next class.

Updates: radiation, kids, yoga, photo session

Cancer stuff: Radiation gave me second degree burns. In my armpit. Specifically in the crease of my armpit. It hurts badly, so I have a 3-inch by 3-inch gel pad stuck to it now. It’s cool and refreshing but oozy and weird. I hope it doesn’t dislodge itself and fall out during class today…

Tomorrow would have been my last day of radiation, but the oncology radiology doc decided to add a “boost” to my treatment. This means four more treatments, really super concentrated to the area in which the tumors lived. It makes sense – studies show a decrease in cancer returning in younger women with a few “boost” treatments. And the boosts will not affect the armpit area, so it can start to peel and heal. Thank goodness.

Radiation has been pretty easy. Lie down for four minutes while getting five doses of super powered x-rays, then on with my day. Other than a sunburned armpit and some slight fatigue, I’m handling it well. The only outward sign of radiation is the tanned skin my right side where the treatment happens. Overall, it’s certainly better than chemo!

Kiddos: The kids started back to school.

Kindergarten is kicking Lauren’s ass. She can hardly keep her eyes open during dinner, and she’s become super whiny until bedtime. She also sleeps until she’s woken up around 6:15 – completely different than the kid who was up by 5:30 every morning during the summer!

There was a bit of a hiccup in starting the year when I learned – at a parent meeting less than 36 hours before the first day of school – that Lauren would be required to wear a uniform this year. (Previously K4 and K5 did not wear uniforms. Apparently there was a communication that came home at the end of last year, but only three K5 families received it. There wasn’t any more communication from the school over the summer. Some found out through word of mouth and others were just learning of it also.) I spent the summer buying clothes for her to wear to school – and I checked and rechecked the dress code in the parent handbook (which wasn’t updated until VERY recently). I freaked out in that meeting, and I sent the new principal a strongly worded email that night. And… the new principal completely impressed me with her handling of the situation. She called me promptly the next morning (day before school) and offered that Lauren and the kids in K4 and K5 would not have strict enforcement of the uniform policy (so she could wear regular clothes when she wanted), and the school had a few smaller size uniforms we could have. Turns out, Lauren LOVES her plaid jumper. I’m out the cost of what I spent on school clothes, so I’m letting her wear them anytime, anyplace. She’s growing so fast that most will be too small soon anyway.

Ethan’s in fifth grade. He’s trying to find his place among his peers. Most of the boys play a sport or two, but Ethan hasn’t shown any interest in sports since Mike died. In fact, he’s specifically shied away from most sports – Mike was Ethan’s coach for baseball and soccer and helped (a little bit) practice football at home. He’s been reprimanded for talking out of turn during classes or hurting someone’s feelings. On one of the “feelings” situations, I have to side with Ethan. The kids were working in small groups to come up with “rules” for the class, and one kid suggested something like “we will give 110 percent in class.” Ethan called the kid out for the “110 percent” thing, saying it’s impossible to give more than 100 percent AND he strongly believed that in a school environment, they should focus on the facts not “bad math.” We talked about how he could have addressed his concerns in a more suitable way, but I also high fived him for identifying the flaw. (The teacher kept the 110 percent thing in the class rules, much to Ethan’s chagrin.)

Other stuff:

  • Mom and I started yoga. There’s a class at the Y for cancer patients and their caregivers. It’s not very physical, but there’s a lot of focus on stretching and breathing. The woman teaching the class also shows us how to modify some of the positions to meet our physical needs (like not putting too much pressure on the arm on the side where lymph nodes were removed). It’s an open-ended class, so no real beginning or end. Mom is loving it. I’m in it for a while (especially to learn the modifications), but I’ll need something more challenging at some point. Still it’s a cool thing to do with my mom once a week.
  • Friday will be my second boudoir photo shoot, complete with SUPER short hair and lopsided, mismatched breasts. (The first session was right after I started chemo – and still had hair, and the last session will be in the spring/summer – after reconstruction and after I have ((hopefully)) decent hair.) I’m hoping it’s as fun as the first time!

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.

Radiation in 3, 2, 1….

Radiation started today. Good news: my plan includes the smallest amount of radiation exposure and the shortest amount of time (only four weeks). The radiation amount is low because the pathology report shows cancer is gone, so this step is just a precaution since I opted for the lumpectomy and I still have breast tissue. Radiation will eliminate any minute traces that can’t be detected. (The length of time is based on a size measurement. I measured between four and six weeks. The radiation oncologist went with the lower end because of the GREAT pathology report.)

The appointment started with “radiation stimulation” (or “the sim”). Basically, instead of radiation, the machine was prepped to take images. The techs spent about 10 minutes positioning me, using the four tattoos as their guide. (A few weeks ago, I met with the team for CT imaging and the tattoos, which will help align me for each radiation session. The four tattoos – two on my sternum and one on either side near the bottom of my ribs – hurt more than the surgery. I was bruised for days – and each tat is really just a small, tiny dot made by applying a drop of ink and then jabbing my skin with a needle.)

Once my position was verified by the images, the radiation started. It took about four minutes to radiate five locations – lymph node area and the “cancer bed” from both the left and right sides plus the overall breast. The hardest part was staying completely still for the duration of the sim and radiation – about 30 minutes with my arms in “stirrups” above my head, my hips extended far to the right. Of course, when you’re told not to move, everything starts to itch – and you’re not allowed to scratch or your position will be compromised.

Following radiation and changing back into my clothes, I had radiation education with the nurse. Basically, we covered side effects and what to expect. My skin from collarbone to the sternum to the bottom of the right breast will appear a little more sunburned week-to-week (red, sunburn-like skin that will itch and may eventually start to “flake” toward the end of treatment). Fatigue is a side effect, but not like chemo fatigue. The nurse described it as wanting to take a nap or go to bed an hour earlier than normal. Physical activity will wear me out faster than normal. Big deal. There are longer-term effects, like the possibility of a secondary cancer in the area (less than one percent) and a life-long sun sensitivity in the radiated area (like it will burn before any other area of my body). Also, I have to use a special deodorant and apply a special lotion twice a day. No pools or lakes during treatment. Plus no underwire bras, so back to the surgical and sports bras for a month. Blah.

The biggest thing is radiation is every. damn. day. It doesn’t take long; most appointments will be 15 minutes or less. It doesn’t “hurt.” The side effects aren’t awful. But Monday through Friday, every day, for four weeks, is a lot of time spent at the cancer center. Ho hum.

I’m just going to focus on the positive: I have to wait six months after radiation for reconstruction on my left side (much needed because things are REALLY “off” right now – I’ll be wearing a lot of scarves to cover up the difference). Six months puts me at spring break, and I’m already on the surgeon’s schedule for early that week in March. New breasts done and healed by summer 2016! Woot!