Cancer: the fickle fiend

Gray on gray, the tumor filled the ultrasound screen. The interloper had enmeshed itself in my breast, slithering between my cells to expand its grasp on my body, on my life.

“A cyst has defined edges,” the radiologist said.

Not like this.

Cancer. Me. Cancer.

I donned the shroud of patient and, after weeks of worry, biopsies and MRIs, underwent a lumpectomy. My medical oncologist advised chemotherapy, but lacked evidence of its benefit for my situation. I reluctantly agreed, but stopped after the first infusion, concerned about permanent neuropathy. I finished treatment with seven weeks of radiation, absorbing the daily dose over lunchtime. Eventually my hair grew back and life went on.

I’m dubbed a cancer survivor.

Survivor? Hell, I don’t know the meaning.

My friend, Kathy, exists in a world filled with PET scans and CA125 tests. Multiple rounds of chemotherapy have eaten away at her organs—collateral damage in the quest to kill the relentless predator that invades her body. Fragile kidneys, neuropathy-torched feet and constant exhaustion task her every waking moment.

I feel like a Roman at the Colosseum as I watch Kathy in battle. A gladiator in the arena, with doctors and nurses offering her weapons, my friend fights alone. She advances, slashing at the evil, pushing it into retreat for a few months, but the disease finds a vulnerable spot and attacks again. I pray and offer support, the limitations of my role as a spectator.

For me, cancer has been a hiccup in my life—a pit stop in which I needed to “get fixed” before I roared back into the race.  I grouse about lousy drivers, too much work and crappy weather. Cancer hasn’t forced me to evaluate my life, to change it. I chew up every day and expect there to be a fresh one tomorrow. I make plans without wondering if I’ll live long enough to see them through.

Days like today, when Kathy tells me another growth requires surgery or chemo, I realize how lucky I am, and understand not the meaning of survivor, but of survivor’s guilt.

October 16: How am I?

The grays that hung on are growing!

Work is really picking up, the days are full of meetings so they’re flying by. I don’t think much about the cancer — probably the most time spent on it is during my walk over to the hospital, and I think my biggest concern is that I’m not upset that I was diagnosed with it. Somehow I’ve conveniently compartmentalized this fact and feel no emotion, no angst about it.  I worry that I’m in some sort of denial. But by the time I get to the hospital I’m already thinking about something else, and when my treatment is finished, I’m focused back on what needs to be done at the office.

I’m so over the wig — I want my hair back! Now that the grays are growing, I search each night for some sign that the other hairs are starting to return. I carefully run my fingers over the terrain of the bald areas, but so far my heart hasn’t fluttered from the delightful discovery of new stubble. My head still seems to be a vast desert of empty follicles, void of any life. At night when I wash my face I inspect my scalp in the mirror, scrutinizing the landscape in the hopes of seeing a 5 o’clock shadow. No luck, but I’m thankful I didn’t lose my eyelashes or eyebrows.

The skin on my scalp is soft, sort of like a newborn’s butt. Evidently my hair has protected this patch of skin from the elements.

I wasn’t kidding when I said by the time I’m in the hospital I’m thinking about something else. When I walked through the halls yesterday, I observed all of the bald heads of the men around me. Did you ever notice that some of them are as shiny as a bowling ball, while others are more of a “matte finish?” Mine doesn’t shine, maybe that has to do with skin type, or the amount of time it has been exposed. I don’t know, I’m just thankful mine doesn’t reflect light!

Otherwise, there’s no change it me, I feel the same as I did last June before the diagnosis, completely normal – except for that pesky draft against my scalp!

Oct 15: Day two of treatment – still not glowing

 

Part of the outline of the area that is radiated

 

My routine is to leave work at 11:45 so I can be changed and ready for treatment by noon. On Friday we were right on time. During one of the treatments they need to validate the amount of radiation hitting my body, and they needed to mark an outline on my chest of the area being exposed to radiation and take a picture of it. I had the time to do it on Friday.

For the radiation check they taped a piece of plastic to my chest — I assumed it was a special plastic, not a recycled chunk of a Pick’ N Save bag.  😉 Once the “oversized espresso maker” rotated down and I was lined up — in the exact same position again – one of the techs drew an outline on my chest with a marker. The machine buzzed and we did the routine again, this time the machine on the other side of me. Then they took the picture and I was done.

As I changed, I was surprised at the expanse of skin that gets radiated– they don’t play around. The area starts just under my breast and goes halfway up my chest. Horizontally it starts at my sternum and goes around to my back.

I haven’t experienced any sunburn and no fatigue at this point – which I wouldn’t expect after just two treatments anyway.

Two down, 31 to go!

Oct. 14: Here we go!

On Thursday I finally had my first radiation treatment. Once again, like an ant returning to the colony, I scurried over to the hospital and all the way through it to get to the elevator that took me down into the bowels of the building.

I immediately changed into a gown and robe and sat in the treatment waiting area. Impressed by the speed the day before, I bravely set up a meeting for 12:45, confident I could make it back to the office by then.

When, oh, when will I learn? I should know by now that if I don’t give myself enough time, we will run late — Murphy has written that law just for me. I started to get nervous so I went back into the changing area and grabbed my phone to find out the time: 12:07. Blood pressure went up 10 points. A minute later, blood pressure up another 10 points.

Sometimes I forget how good I have it: from the treatment room they wheeled out an older woman, hooked up to an IV, covered in a blanket. They got me in and out of there in five minutes.

The techs reminded me that I needed to meet with the nurse and I told them it had to be fast. We ran into her in the hall and she whisked me into an exam room where she speed read the instructions and handed me the lotion I was to apply to my chest twice a day. The treatments would take a little longer on Tuesdays, as that is when I meet with the radiation oncologist.

I changed at breakneck speed and headed back to work. By the time I got there, my head was sweating beneath the wig, but I made it.

October 13: Radiation dress rehearsal

I meandered through the hospital and found the elevator that took me to the basement where the radiation department resides. I was instructed I didn’t need to stop at the front desk, I could go directly to the waiting area for treatments. The hospital has multiple machines, but it seems you go to the same one at the same time every day, Monday through Friday.

I sat down and opened a magazine, and within a few minutes one of the techs found me and instructed me to change into a gown and sit in the area for machine one. I entered the women’s changing area and grabbed a gown and a robe. On planning day I did the same, taking off my shirt and bra, but I left on my wig. When I got into the simulator area for planning, I decided to remove my wig because I didn’t know how long it would take, and wigs don’t like body heat.

On dress rehearsal day, I decided to scrap the wig, storing it in the locker with the rest of my things. I barely sat down in the waiting room before I was whisked into the treatment area. The room is large, with a machine that sort of looks like a life-sized espresso maker sitting in the middle. A platform is situated where the coffee cup would sit.

I laid on the platform and they had me position myself exactly as I did during the planning session — my arms over my head, holding the bar with my hands in the same position. There were four techs swarming around me, a couple of them pulling on the sheet beneath me to get me in the position needed. The ceiling has a large light fixture that looks like stained glass with various types of leaves. Above me was a cut-out area from which shown a red light. This light is what they lined me up to, the three tattoos aligned with the points of light, I assume. The espresso maker rotated down so the top, which looks like a crown, was situated at my side. The techs came in and out, the espresso maker making a buzzing sound when they left the room.

The crown  rotated to the other side of my body, another buzzing sound and I was done. It took about 15 minutes. Not bad.

My radiation oncologist’s nurse was to meet with me afterword to talk about treating the area that was being radiated. She was running late so we would do it the next day.

I threw my clothes on and headed back to the office.

Oct. 9: Venturing outside

 

Not much dark hair left!

 

It was too hot to wear anything on my head today. I ventured out with the baseball cap to wash and wax my cars, but immediately took it off. Instead I slathered my head with sunscreen and headed back out. I felt self conscious for a little while, but it faded away. It’s a strange sensation to feel the wind against my scalp.

Although I’ve been forthcoming about my cancer to my coworkers, I haven’t discussed it with many of my neighbors. I didn’t want people stopping by with chicken soup, or checking in on me to see if I’m alright. They may have wondered why my mother stayed with me for awhile, and why my father has mowed my lawn most of the summer.

I was thrilled to have such a nice day to get the cars ready for winter. The dogs had a great time romping around in the backyard, fetching the ball and dropping it at my feet when I watered the plants.

It must be strange to see me running around my yard, as if nothing happened, yet looking very much like a cancer patient. What do you say to me?

The dark hair is still falling out, but there isn’t much left. Ironically, it looks like the grays are made of tougher stuff. They’re hanging on and possibly growing! That makes me optimistic that pretty soon I’ll have a head full of stubble again.

Oct. 8: Me? A survivor?

 

My scars from surgery and biopsies

 

I don’t consider myself a breast cancer “survivor.” What brings this up? A few weeks ago they held the big Susan G. Komen run/walk in Milwaukee. I didn’t attend, but I heard about all the efforts made at the event during the September breast cancer support group session. From what I understand, the women who survive breast cancer get massages, etc.

Maybe if I had gone through all four chemo treatments, or if I had been stage II or III — or maybe I’ll feel differently after radiation. Right now I don’t feel like a survivor. I feel like a person who had a lousy  summer and is now moving on.

The breast care coordinator who runs a support group said a lot of women feel this way, and have a meltdown after treatment is completed. When there are no more appointments and life goes on.

I’d like to get a group together for next year’s walk. I’m impressed with the headway that has been made in treating breast cancer and want to support efforts. I hope someday soon we’ll be able to figure out how to eliminate cancer without the toxicity of chemo. Maybe by next summer I’ll feel like a survivor. Or maybe never.

I’m amazed at how often cancer is mentioned — TV, radio, magazines, newspapers. Evidently I never paid attention before because now it seems that the topic is in front of me all the time. Mom mentioned the same thing. In a recent People magazine there were three articles about people battling cancer.

Most of the time — even wearing a wig — I forget about the cancer. It still seems like it happened to someone else. Even when I see myself in the mirror – bald head, scars from biopsies and surgery, and breasts that are no longer similar in size and appearance — I don’t think about the fact the changes are due to a malignant tumor. Instead they are my badges of honor for the life I’m living. They’re due to the challenges God gave me, the obstacles I need to tackle while existing on this planet. In some ways I look at this experience as a life lesson — sort of like trying to get through a difficult class at college. Keep your head down and grit your teeth, forge ahead and before you know it, you’ll be through the gauntlet and on the other side.

Oct. 7: Ready to glow!

On Monday I went in for my planning session. I met with the radiation oncologist for a few minutes. He reaffirmed his confidence that I wouldn’t have troubles with sunburn. I got the impression from his manner that he had no issues with me not completing chemo. He felt the combination of lumpectomy and radiation was enough.

After his departure, his nurse and I talked about the possibility of fatigue. She said it usually started in weeks three and four. During my encounter with “Helga the Hun,” the previous week, I was advised to do a lot of stretching and to keep active during radiation. Hopefully that will help with the fatigue.

I was then sent off to the CAT scan. Second one in barely a month (first one was when I thought I was having a heart attack after chemo), but no medication searing through my body this time. Instead they taped some metal strips to my chest and sent me into the machine. Afterward they shined a light (looked like a laser) on my breast, dribbled some ink on three spots and then poked the sites with a needle, giving me three tattoos. No butterflies or unicorns, just three little dots to help them line me up for each zapping. Hrmph! This, after I swore I’d never have a tattoo!  😉

We have a “dress rehearsal” next Wednesday, and my glow sessions start over lunchtime on Thursday. Were getting close to the end!

Sept. 30: My decision is firm: no more chemo!

I’m always unsettled after meeting with my medical oncologist. She never seems to be happy with the decisions I make. She wasn’t happy when I originally said no to chemo and she didn’t seem happy when I said yes to chemo. I guess, as a medical oncologist, seeing so many sick people, can you ever be happy?

We touched base and went over my blood tests. I’m a little anemic, but otherwise normal. We discussed my experience with chemo, and she said something to the effect that I might as well finish up the three cycles since I lost my hair anyway. I didn’t go into my concerns about neuropathy, I wasn’t in the mood.

The single dose of chemo may have knocked me into menopause. If my period never returns, in two years I’ll be taken off tamoxifen and put on an aromatase inhibitor. Otherwise it’s tamoxifen for the next five years. I was given the green light to start radiation. She said I could start the tamoxifen right away, but I mentioned that my radiation oncologist wanted me to wait. She said there is no proof tamoxifen interferes with radiation, but some radiation oncologists feel strongly that it should be delayed until after radiation. She was fine with me following the radiation oncologist’s preference.

The biggest side effect of tamoxifen seems to be a higher chance of blood clots. She advised me to get up and move around on long flights and to stop frequently during long car rides. The oncologist also said that women should stop tamoxifen when getting hip or leg surgery, or any medical treatment that limits physical activity.

I was relieved to get the picc line removed promptly after my chemo infusion. It was my way of committing to my decision to stop chemo. I had a feeling my oncologist would want me to finish it, but I think my decision is the right one. My tumor was hormone receptor positive, so I’m confident that tamoxifen will keep any stray cancer cells at bay. In five years time I should be well into menopause so there would be little hormone for the cancer to feed on.

On a lighter note, the oncologist mentioned that many women change their hairstyles after chemo because they have the opportunity to experiment with wigs. We’ll see what I end up with, after wearing a wig that makes me look 10 years younger!

I’m pretty comfortable in the wig now, the itching is minimal. Either I’ve gotten used to it, or the little hair left on my head doesn’t cause enough friction to irritate my scalp.

I had to wash the wig this week, I think I was putting too much spray on it. I filled the sink with water, squeezed in the shampoo, and swished the wig around in it. I then let it soak for about 10 minutes. I rinsed it, put it back on the Styrofoam head and combed it out. The wig looks great again.

It’s still awkward when people who don’t know about the cancer compliment me on my new hairstyle. Depending on who it is, either I explain my predicament, or thank them for the compliment.

Sept. 29: Hair, hair everywhere … except upon my head

The pile of stubble that carpeted my bathtub this morning

Well, it hasn’t finished falling out. This morning my tub looked like it was carpeted in stubble. By the time I got home tonight, the sides of my head were pretty much hairless. It now looks like I have an advanced case of mange. It seems my gut feeling about being hairless by Wednesday was darned close. If I hadn’t shaved my head, I would’ve looked pretty patchy by today.

It seems that people at work didn’t quite know what to do about me — they didn’t know if they should avoid the topic of cancer and say nothing about the wig, or if they should bring it up. So I sent out an e-mail to the folks I work with regularly and told them I was comfortable talking about the cancer. Hopefully it will help everyone feel at ease around me.

Around lunchtime I ran into a coworker in the bathroom and we talked about my cancer and the wig. I took off the wig to show her my shaved head, and while we were talking two other gals came in. They said I looked fine without the wig, but I told them I would be too self-conscious. It felt good to get the mop off of my head for a few minutes mid-day so I could scratch the heck out of my scalp. The elastic around the edges is a bit challenging. At the end of the day I have red ring around my skull.

Tonight we celebrated my father’s birthday, so the family got to see me in my stylish new “do.” They thought it was a good choice. After dinner I pulled it off and everyone commented on my beautifully round noggin.

Luckily it’s a warm evening so I don’t have to wear a cap for a few hours, my scalp can get a chance to recuperate.

I expected the dogs to bark at me when I came home hairless, but they didn’t seem to notice. On the other hand, Callie had a fit about the wig/Styrofoam form sitting on the dining room table. We had quite a round of barking at the alien creature stationed on the table. We have follow-up sessions each night as Callie warns me about the odd being as I brush out the tangles of my wig.

Tomorrow it’s back to the medical oncologist for follow-up and then off to radiation planning on Monday.