Cancer, Cancer Go Away. Come Again...um, Never!

When I was a little girl I never thought about money or the financial gyrations my parents went through to provide for me. I never thought about taxes, or insurance, or politics, or illness and disease and death.

Illness and disease and death.

Three little words, really. I know I can't ignore them or pretend that they don't effect everyone on the planet at some point in their human journey. After all, what is the saying? Nothing is sure in life except death and taxes? So why am I so bothered by them lately? Bothered to the point of wishing for the return of my childlike view of the world - a world where my mother held me when I cried, my dad worked to pay the bills, and my biggest worry was if my friend would be at home when I knocked on her door carrying my pink Barbie case under my arm.

Sleeping in blissful peace

I can't go back, but Lord knows I've tried in the last month to lock my vision on the shiny parts of life and ignore the rest.

Today I'm taking the blinders off. Here is the ugly and hurtful truth. People I know and love are going to get cancer, all shapes and forms of this dreaded disease. People I care about are going to die of cancer and die quickly in some cases. People I like and admire who have had cancer are going to relapse. I might even relapse. Ouch, that one stung but it's painfully true.

I visited the doctor today. She ordered a chest x-ray because I shared with her how I've been feeling lately. "It's nothing, I'm sure. Let's just be proactive," she said as she wrote the order.

"Yes. Let's do that," I replied as those three little words played like a scratched record in my head.

Illness, disease, death.

I'm vulnerable to this droning music because, lately, the point has been hammered home that the earth could suddenly move under my feet. Again. I'm well now but who says I'm going to stay that way? In the last few months I've been reminded over and over how fragile our bodies can be. It's left me shaken.

Since I have not asked anyone's permission to write about them I will honor my beloved friends anonymously.

Except for this one, as I now have permission. Mrs. Theresa Beauchamp lived in upstate New York. She raised a large family, giving everything she had to her children and their children. Her smile and dancing eyes lit up all the photos I've seen of her. She lifted, lugged, remodeled, and worked around her house well into old age because it made her happy. She gathered with her family at the lake and reveled in the noise of passels of grandchildren playing in the water. Late last year she was diagnosed with cancer and to her family's dismay was gone seven weeks later. I mourn her because I love her daughter, Terry, and through her daughter I see all of this glorious lady's accomplishments. She will be missed.

Terry and her mother

There is a man who loved kids so much he taught them English for many years. He loved to write. He loved to play basketball. He was the fiercest critic of my writing. I am better and more skilled because of it. One evening not so very long ago he passed out on the basketball court. He had a brain tumor. He stopped  going out and I missed the way he'd line through and scribble over my manuscripts. One Monday evening last year he showed up at a writers' group meeting. I was lucky enough to be there. Afterwards, several of us went out to eat. We talked and laughed until my sides hurt. My friend joked in his usual off color way. I was so happy to see him but I could tell he was fading. We talked on the phone a few times before he moved across country to have the support of his family. He died in December. I cried when I saw the picture of his headstone. I can't bring myself to erase his number from my phone.

Another friend is recovering from breast cancer. She seems to be as sassy and vibrant as ever but I can't wait to hug her and look in her eyes. I need to see for myself that she has come through to the other side. And yet another friend is in the hospital again, working her way back to remission and normal life.

And a few days ago, a dear friend in my home state of Georgia shared that she's been diagnosed. She's reaching out to me because she knows I will understand. I'm her big sister in cancer. If she were pledging my sorority I'd turn her around and face her toward the door with marching orders to never come back. Sadly, life is not a college campus and she doesn't have a choice in learning the secrets of the breast cancer club.

Since I have been in her shoes, I can't go on blissfully saying bad things only happen to other people. I can't say that someone else will be there to provide comfort. It's not okay if I look the other way until the crisis is over. If I put my fingers in my ears and sing la, la, la, one day I will have to take them out, acknowledge that life is scary and not at all fair. My parents knew it. Every generation before them knew it. It's my turn.

Illness, disease, and death.

Don't ignore.

Accept.

Help.

Be strong.

And, there you go. It's all anyone can do.

How Do I Tell Them?

 
After I found out I had cancer I had the strangest feeling. I liken it to Alice falling down the rabbit hole. Conversations with acquaintances became stilted and distant. The simple question we ask strangers - How are you today? - turned into a stabbing reminder that I'd be lying if I answered with the expected "Fine. How are you?"

So I would say nothing and smile warily before looking away or babble on about the price of blackberries to the well-meaning cashier at my local grocery store.

Talking to family and close friends plunged me further. Who do I tell and when? In what order? Is this the conversation where I dissolve into tears and tell my mother, who lives across the country from me, that I have breast cancer? How can I tell her when she is only a week away from a hospital stay to replace her pacemaker?

Who I told first and the details of the telling are lost in a fog of smiles, hugs, tears, and dread. I did what I had to do and quickly wadded up the moments and threw them away like letters I never wanted to read again. But there are a few memories that will stay with me forever.

I took a good friend of six years aside after a meeting and told her my news. As her eyes welled with tears, I smiled and reassured her that I would be alright. After a few minutes where she stared at me, a little dazed, and I told her the details of my illness, she said, "If you need help drawing your eyebrows on please come to me. I'll make them look very natural."  I was overwhelmed with love for her.

Soon after, my husband and I flew home to Georgia for his high school reunion. We'd attended the same school, so I knew most, if not all, of the people at the dinner. Reunions are festive occasions where we dress to impress, condense the last twenty years of news into a two minute recitation, and pray that we can match the names from the past with aging faces and bodies. I couldn't figure out how to work in the news that the following month I'd start Chemotherapy. I wanted to have fun and laugh for real, not whip out my practiced smile say, "It's okay really. I'm going to be fine."

It helped to reconnect with old friends

 Most casual conversations don't recover from the "I have cancer" bombshell. Todd and I ended up sitting at a table with a classmate who is also a breast cancer survivor. She talked about her experience in casual terms that I just could not process. To be fair, she'd been well for many years and didn't know about my problem. As she talked I listened intently, hoping to glean some wisdom without breaking down and crying into my plate of  finger food. Before the night was over, I went to the bathroom seven times. I counted.

To my right is a sweet lady (one of Todd's classmates) who passed away from breast cancer this month.

In the bathroom, I cried a little, splashed water on my face, shook out my hands to release the frustration, and gave myself little pep talks. "You can do this. Go have fun." Still, an insidious voice rose from behind me to say, "What if this is the last time you see this group of friends? It could be, you know. You could die before the next reunion. It could happen."

Then I'd start the process (1 through 7) of crying, washing, shaking, and reassuring all over again.

I waited to tell my parents in person. It was on this same trip to Georgia. We sat in lawn chairs under the big oak tree, as we often do in the summer. I don't remember what I said. I just remember the look of devastation on their faces, my stiff smile, and my repeated reassurances that I'd be fine. I had to be strong for them. Their only child was seriously ill. They needed to lean on me.

Gold panning in Dahlonega served as distraction after telling my parents the news.

That's what I mean about the rabbit hole. All of my emotions, all of my responses, all of my reactions were twisted, upside down, big then suddenly small, absurd then miraculously sublime.

I wish I'd just said to everyone I met along the way, "Good evening. Hello. I have cancer." Then zipped my lip and let the world take care of itself.

I could have been Tig Notaro. "Hello. Good evening. I have cancer," is exactly what she said when she walked on stage to perform her comedy at Largo in Los Angeles back in August of this year. She'd recently found out that she had breast cancer. It seemed insincere to do her typical routine. Her jokes seemed trivial compared to the earthquakes going on in her personal life. So she let the audience in, let them feel her confusion as she worked through the problem on stage giving an impromptu performance. I think it's the most touching dialogue I've ever heard. It's well worth a listen. This American Life did a segment called What Doesn't Kill You that featured a portion of the live half-hour show.

Tig Notaro on stage.

I never want a do over on the cancer bombshell, but if it happens I want to be as brave and forthright as Tig. God bless her. She's told the press that her treatments are going well. Here's to long and happy lives for both of us, Ms. Notaro!

We Can Rebuild Her

(Insert breast cancer patient's name here), a woman barely alive. Gentleman, we can rebuild her. We have the technology. We have the capability to make the world's first prefabricated woman. (Insert name again) will be that woman. Better than she was before. Better. Bigger. Perkier.

Watch this clip before reading further:

 

I had a little fun rewriting the opening to one of my favorite television shows from the 1970's, The Six Million Dollar Man. That is how I felt during the conversations with my doctor about breast reconstruction. That's how I felt and still feel when I see or read interviews with celebrity women who've had cancer and opted for reconstruction following a mastectomy. Sometimes it's just too difficult to look at my true feelings about cancer. Jokes make it easier to take.

I remember one television interview, in particular, with a husband and wife. I won't name the show or the celebrity because that woman's journey belongs to her. Everyone handles it differently. Everyone's spouse handles the anguish differently too. Judging them would be wrong. They were muddling through the experience like the rest of us. But, since it was a national interview, I feel I can comment on it. The interviewer asked the smiling couple about the wife's upcoming mastectomy and reconstruction surgery.

Here's where it got personal for me.

The woman responded that even though she only had a very small, contained lump (stage 1 cancer, if I remember correctly) in one of her breasts she'd decided to have them both removed.

"So you are having both breasts removed to minimize your risk of having breast cancer again?" the interviewer asked.

She answered, "Yes, but mainly I'm having both removed so that I'll get better results with the reconstruction. I want the girls to match."

Her husband joined in, "We asked for big ones this time."

Everyone on the set laughed. I threw a pillow at my television.

I am very grateful for advances in medicine. Treatments, after care, and prevention are so much better than they were for our mothers and grandmothers. I'm not complaining about breast reconstruction and the normalcy it affords women like me. I am complaining about the media  and the way it sells and spins reconstruction to women who've had cancer. In my humble opinion, it's perverted. A very serious set of surgeries are presented as a fluff piece in People Magazine or on network talk shows. Let me explain. Bullet points should work nicely. The infuriating statements I've heard or read in the media are in bold.

1) It's a quick trip to the plastic surgeon to get your breasts back.  No. No. No. I chose a reconstruction method using a tissue expander and a silicone implant. There are many other ways. I've had 4 surgeries related to reconstruction and expect to have at least one more to complete the initial process and it doesn't end there for me. I opted to keep my right breast, so if I want "the girls to match", I'll need additional mastopexies about once every 5 to 10 years. I'm in my forties. Let's do the math. 6 more surgeries are coming down the pipe if I live to be eighty. I don't think I'll care about the my sagging breast when I'm eighty but if I did...well, there you are.

 This is not a quick and painless process. I had my first surgery almost two years ago. I'm not finished yet.

2) Let's get excited about having a clean slate ladies. Isn't it great that you can pick your new size. Want to be a DD? Go for it! No, it's not great and no, I'm not excited. The reason I'm faced with this choice is because I lost my breast to an invasive disease. I was perfectly happy with my body before I got sick. I'd keep my breast and it's sister if I could, thank you very much.

It's true that, once faced with the problem, I could go as large as my skin would allow or smaller than I used to be. The first step in reconstruction is the placement of a tissue expander to hold the shape of the breast mound. This expander is filled with saline. On subsequent doctor's visits the expander is injected with more liquid until the patient reaches just a little larger than the size they want to be. This gives the surgeon a bit extra to work with while shaping the new breast, a margin of error of sorts. The skin stretching is a painful process. For the next few months after the tissue expander placement I felt like an elephant was sitting on my chest. Stretching my torso too quickly was jarring and painful. When my body finally adjusted to the process, I liken it to each time the orthodontist tightened my braces.

What a woman has to remember if she decides to go larger than her natural size is that she has no breast tissue under her skin to soften the look of the implanted device. The only thing under her skin will be the silicone bag (unless she goes with another method). The larger she goes the harder her breast will feel, the more the bag will weigh down her skin, and there is no way to hide the contours of the implant with such a thin (skin) covering.

3) Lucky you! You'll have brand new breasts! No. I have a fake breast where my natural one used to be. It looks good for what it is but it is not a brand new breast. It's more like a Barbie boob glued onto my chest.

4) Just get them both off while your at it. You'll look better in the end. I didn't do this. I felt very strongly that a bilateral mastectomy was not for me. My cancer was contained to my right side and I tested negative for the BRCA1 and 2. I am at low risk of this or a new cancer returning. My plastic surgeon told me that many women choose prophylactic mastectomy even when they have a low risk for recurrence. It's easier for the surgeon to give the patient symmetry. He was only trying to help, but for the life of me, I can't understand why I would want to lose two body parts just so I can have a matching set of prostheses.

Very few natural women have perfectly matching, symmetrical breasts. I'm in good company.

5) No one will ever be able to tell you've had cancer. You will be as good as new. This is sort of true. With my shirt on I look the same as every other woman on the street. I like blending in again and only talking about my past illness when it suits me. 

If I take off my shirt, well, that's a different story. You would know I've had cancer. I have significant scarring, which is the norm for women like me. One side is extremely firm. The other isn't. The reconstructed breast has an odd shape. And this result is with a very talented, highly recommended surgeon.

End of bullet points. Moving on.

I'm alright with these imperfections and happy with my decision to have reconstruction with an implant. What I object to is glossed over, cutesy half-truths and misinformation fed to us by the media to make women feel better, like cancer is no big deal and recovery from breast cancer is all about regaining your female sexuality, not saving your life. That is why I called it perverted.

I am a grown woman who suffered from a life threatening illness. Having stage 3 cancer is as close to serious as it gets. I needed full disclosure about what lay ahead of me in order to make the best decisions for myself and my family.

Eureka! This is it. I understand why this upsets me so.

The media, in general, treats women with cancer like airhead, child-like creatures who can't handle the truth. They are turning us into happy warriors instead of giving us the tools to be strong, capable women. They candy-coat their conversations with famous cancer survivors, women we should be learning from if they are going public with their illnesses. Instead of using the interviews as teachable moments, the media laments over the loss of the famous woman's sex kitten status and rejoices that we will soon be able to gaze upon new, improved breasts when the happy warrior poses for future issues of Maxim.

The media says they are covering breast cancer but they aren't. They refuse to look the disease square in the eye. They distract women with tales of "Oh, it's not so bad. You'll get through it and be better for it!"

I like to think this media slight of hand is not malicious. I like to think it's because, as a society, we chat about breast cancer all the time, but we are uncomfortable (and sometimes incapable of) talking about women's breast health in a helpful, nonsexual  manner.

The links I've added are important to the context of this post. If you have the time and inclination, please click on a few to see what I mean.

A Port In Every Storm

"Looks like you are healing well from the biopsy. That's good." Dr. Spotts took my hand to help me sit up after the exam. Before I'm fully upright, she added, "You have cancer."

July 27, 2010. She dropped the bomb just like that.

The room started to spin. I held my breath. My husband's face slowly came into focus. My first thought was not about myself but about how sad for him that his wife had cancer. Before my first tear fell, the nurse put a tissue into my hand. Sharon was good at her job.

"You need chemotherapy. I'm sending you to an oncologist. She will devise a treatment plan," Dr. Spotts said this quickly. No breaks in her speech to ask a question or give a voice to my state of shock.

At the time, I'll admit, I thought she exhibited less than ideal bedside manner. It didn't take long to realize that she, too, was good at her job. Dr. Spotts knew I was headed for a meltdown and when that happened I wouldn't be able to digest anything she needed me to know. Todd, my husband, would be in the same shape. Get out the important parts. Deal with the tears. Keep moving forward. I had family and friends to help with my emotional state. She was in charge of keeping me alive. I admire her handling me this way.

The prospect of chemotherapy scared me most of all. I'd seen many movies about people with cancer. I knew how sick it would make me and how I'd wish that I wanted to die before it was over. Consenting to chemotherapy felt like giving a doctor permission to poison me, kill every good cell in my body, and turn me into a rag doll in the process.

Thank God there have been advances in treatment and the management of side effects related to chemotherapy. My experience was nothing like on the big screen in the same way that actual childbirth is nothing like it's depicted on film.

I completely turned myself over to my new oncologist. I trusted her and hung on every word she said. I followed every direction, except one. Dr. Allison explained that many, if not most, chemotherapy patients opt for a PICC line or port to be placed in their chest. That way the chemicals would be delivered without damage to my veins.

"But you have very good veins. You're young and otherwise healthy. I'll leave it up to you," she said.

"Let me try it without the port. Can I get one later if I change my mind?" I asked. It seemed so invasive to have a permanent catheter placed under the skin below my collarbone. And very scary to contemplate a cannula inside my right internal jugular vein for several months.

"Sure. It's your call." Dr. Allison typed instructions into her desktop computer and scheduled my return to begin Chemotherapy in a few weeks.

TAC Chemotherapy is one of the most caustic chemo cocktails on the market. It works, but in the process it burns up the small to medium-sized veins it passes through. After the nurse inserted an IV into my arm and flushed my vein with a little saline infusion it was time for the first drug. Adriamycin, sometimes called doxorubicin, is a bright red fluid injected very slowly into an IV by syringe.  It's administered this way because the nurse must control the speed by which the Adriamycin makes contact with my vein, monitor me for adverse reactions, and monitor the IV site to be sure the cannula is still in my vein and not leaking fluid (nicknamed The Red Devil) into my surrounding tissues.

I knew I might have made a bad decision when I turned down the PICC because immediately my right arm started to burn, not on fire burn, but bad enough to make me question my judgement. Three weeks later at my second treatment, it took the nurse three tries to find a viable vein for my IV. 

"Why don't you have a port?" she asked.

"I thought I'd try without it first," I answered, sheepishly.

"Ok. You've tried it. Now get one before I see you again."

Yes Ma'am, I thought (picture me saluting her).She was right. Having a PICC line or port inserted turned out not to be so bad after all. I was asleep during the procedure. The incision healed quickly. The port under my skin looked like a raised bubble on my chest but I didn't care. It was much preferable to further damaging the veins in my right arm.

So, don't be a hero. If your doctor offers you a PICC line or some other form of catheter port before chemotherapy my humble advice is DO IT. Save your veins. You'll need them for the rest of you life.

My arm a few days after a blood draw

Every time a nurse attempts to start an IV or a tech pokes me multiple times to draw blood, I am reminded about what a martyr I can be at times. From only two exposures to TAC therapy the best vein in my right side collapsed leaving behind a valley running up my arm. Imagine a dry river bed or a flattened plastic tube. That's my vein. And it, most likely, will never be any better. Don't let this be you.

The bruising got worse before it got better

In short, I stand firmly on the pro port side of the argument. If there is an argument to be had. Who knows? The only conflict might have been with myself.

That's Not Your Life Anymore

One year after Chemo

I'm down to seeing my oncologist once every six months, a welcome change from the almost weekly visits I'd become accustomed to. This changes our relationship. Meeting Dr. Allison now is like having lunch with a friend. I notice she's wearing new glasses and her hair color is slightly darker than back in April. She notices my shoes, a pair of Teva slip-ons easily dressed up with a skirt. I think it's cute she doesn't remember commenting on them several times before. It's clear Dr. Allison's taste has remained steady over the years. She's a woman who knows her what she likes. Picture this...We are sitting at a patio table. I'm toasting our successes with a fruity drink and dabbing the corner of my mouth with a linen napkin.

Reality check...We are in her gaily decorated office. Wizard of Oz memorabilia everywhere. I'm wearing a pink paper napkin and she's discussing how to tweak my pharmaceutical cocktail. It's okay though. Just like friends, we laugh and crack jokes about my ten pound weight gain. It's the holidays. They last from October to January. Ha, ha, ha.

Then it's straight into business mode.

I take five pills a day. That's five too many for me. I ask about eliminating Neurontin, a yellow capsule that helps stave off night sweats brought on by  the Tamoxifen I take and early onset menopause. Menopause at 44 years old, a gift (read with sarcasm) from four months of TAC Chemotherapy.

"I haven't had a problem in a long time. What do you think about dropping the Neurontin? I hate taking so many pills. Before I got cancer I hardly ever took a pill."

Dr. Allison rolls her eyes and waves her pen at me. "That's not your life anymore. Keep the Neurontin. Trust me. It's not that many pills. Just toss'em back in one mouthful."

She tells me to lie down and for the millionth time she examines my breasts, paying close attention to my left side--the side that had the audacity to grow a rather large finger-like tumor and forever change my life. This is the side I lost to a mastectomy and had reconstructed with a silicone implant. Two weeks ago my plastic surgeon attempted to sculpt a new nipple. Two headlights are better than one, so I've heard.

The process did not go so well. It's not Dr. Spann's fault. My plastic surgeon's skills are beyond compare. He's brought me this far with superior results. It's the fault of my radiated skin. See, after a round of radiation treatment the irradiated skin becomes taunt and less stretchy. Think back to my imaginary lunch date with Dr. Allison. I'm more of a linen napkin girl as opposed to a jersey knit sweater. My irradiated skin also has a difficult time healing, so any operation in that area carries the risk of failure.

Before my mastectomy, I scared myself sh**less with post-surgery pictures of breast cancer patients on the Internet. I came away with the solid belief that I'd never be even close to normal again. I've been lucky up to this point. I have a talented plastic surgeon and my skin recovered nicely from the deep burns of radiation. My reconstructed breast mound has a pleasing shape (alibeit, a little like a very firm grapefruit sitting high on my chest) and normal peachy skin tone.
  
Back to my exam where Dr. Allison is looking at my left breast, particularly the black, inky nub protected by a plastic shield.She sucks in her breath and says, " Yikes. So you're not going to try that again, I'm assuming."

Nipple failure. Constricted blood flow has caused half of my new nipple to die. For now, I am babying it with a slathering of triple antibiotic ointment, protection from accidental rubbing or bumping, and heartfelt prayers to God.

"Carol's sells stick on nipples. There a really nice option." She closes my shirt with a crinkle of paper and helps me sit up.

I tell her I'll think about it. On contemplation, a sticky, pliable, silicone nipple did seem the easiest way to solve my one headlight problem at the beach or on a cold, wintery date night with my husband. This might also be less traumatic than a skin graft from my intact, right side nipple or my labia (that one makes me cringe), as suggested by Dr. Spann. Another option is a very cool tattoo to disguise the nippleless area. Maybe a dragon lounging across my mastectomy scar.

I give Dr. Allison a hug and a smile as I leave the office but  her words play in my head. That's Not Your Life Anymore.

As if she'd poked me in the eye with her index finger, I was left with blurry, slightly off kilter vision. Honestly, it ruined my day.  After an evening of sulking, I have a better understanding of my reaction. I truly believed that one day soon I'd be the Lisa I was in the spring of 2010. I'd be that healthy, never say no, never take pills, vibrant, sexy-for-my-age woman again. She was coming back. I just had to keep moving forward to find her.

But that's not true. She is not me anymore. I am the post breast cancer me and I have to learn to love this me as much as I did the old me. I have to take my top off, look in the mirror at the mastopexy scar on my right breast and the mastectomy results on my left and say that I love me. Scars, black nub, everything. If I'm going to be me again I have to love what I see.

So I'm trying this affirmation:

This my life now and I am happy to have it.