Know Stage IV: Looking Good Isn’t Always Feeling Good

September 18, 2017

For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV

Looks can be deceiving, especially when it comes to metastatic breast cancer. For Know Stage IV, Martha Carlson writes about life as a sick person who doesn’t look sick.

No one is going to look at me and think, “Oh, she has cancer.” In this everything-looks-normal-but-I’m-probably-going-to-die-of-breast-cancer world that I inhabit, I am not the stereotypical face of cancer that kills. I am not even the stereotypical face of cancer that can be cured.

I have hair. I have muscles. I can walk and bike and work.

But mostly it’s the hair that confuses people. “Metastatic breast cancer?” they ask, disbelievingly. They look at me and see someone just like anyone else.

Sometimes it even confuses me. I do look and feel pretty good. But the fact is I was diagnosed with de novo metastatic breast cancer almost 3 years ago, soon after my 50th birthday. “De novo” means the cancer was diagnosed metastatic from the start. Before that diagnosis, a second opinion had reassured me that my tests indicated I’d be putting “all this” behind me in 6 months and although it was not a good development in my life, cancer seemed beatable. Then my oncologist did another pre-treatment scan and spots in my lungs were found. Another scan showed questionable spots on my ovaries. A biopsy confirmed metastases to one lung while an oophorectomy ruled out metastases in that location.

A pathologist gave me the HER2-positive metastatic cancer diagnosis and my life changed. I had a great response to my first line of treatment — 6 months of paclitaxel (Taxol), trastuzumab,(Herceptin) and pertuzumab (Perjeta). The response was so good, in fact, that my team of an oncologist, a surgeon, and a radiologist, and the larger review board at the hospital agreed to treat me with a lumpectomy and breast radiation despite that not being the protocol for metastatic cancer at my location.

I have experienced some problems, including ongoing neuropathy, and blood clots around my port, which meant the removal of the port and daily blood thinners. I’ve continued with every-3-weeks infusions of Herceptin and Perjeta as well as regular CT scans, blood tests, and heart monitoring. It’s a life that doesn’t let me escape the reminders of cancer, but it has allowed me to watch my kids start college and high school, and spend time with my husband, family and friends.

Since I look like any other woman, I always face a choice when talking to people who believe that because I look good, I "am" good: Do I educate or do I ignore? When I choose to educate and explain about my ongoing treatment with drugs that nurses don't touch without gowns and gloves, it’s fair to say that I am on the receiving end of comments that can sting. When you look cancer-free, people want nothing less than total positivity. Even those people who seemingly understand that there's no end to treatment are quick to say how happy they are I’m doing better. They ask if it's "all over" and say "I knew you could beat it!" and I, when I hear things like that, wonder what they expect me to say. I usually smile. I let them finish their sentences. I say “thank you.” I think about how much I want to share with them versus how much I want to tell them they really should know better. 

Let's face it, it’s one thing to talk about suffering and loss when you’ve got no hair but quite another when you need a haircut. I've experienced that difference firsthand since there was a brief period in my treatment — from January through August of 2015 — when I looked the part of a cancer patient because of the side effects of Taxol. Chances are I will look sick again in the future but for now I’ve almost become used to this place where looking healthy is a lie.

Of course, living with that kind of split reality is not easy.

It's especially hard when it comes to close friends and family, who I see fighting their own internal battles in the confusion of wanting to acknowledge how I feel while insisting the "old" me is back and everything is fine. Having empathy for these people I love, who want so desperately for me to be cured, means that I have to find courage to tell the truth.

I get it. I really do. They don’t want to know about the friends who’ve died from the same disease I have. They don’t want to see that it is hard for me to handwrite a letter because neuropathy makes holding a pen painful. They definitely do not want to know that I think about my death on a regular basis. All of these things in a person who is relatively young and looks perfectly healthy are scary and dissonant. I tell myself that if it’s hard for me to live in these two realities, it must be impossible for many of them. 

I also have sympathy for strangers, and even doctors, who can’t adjust to the idea that someone who looks like me has a disease that is incurable and progressive and kills 40,000 U.S. citizens a year. I have sympathy, but not a lot. While I try to be gentle with my friends when they say something that shows they haven’t been paying attention, I give strangers the full breakdown of what it means to live with metastatic breast cancer and what they can do to improve my odds.

I explain, sometimes again and again, that metastatic breast cancer doesn't have a cure and that for me, treatment is ongoing. I try not to say "until I die" but only because I feel for these people who have been kind enough to say something and because there are plenty of people who do their best to ignore cancer, even when its got the face of a woman wearing a pink scarf. I explain what I know about this disease, answer questions, and usually say, "But I'm feeling great right now," which is sometimes a lie because I may look great but the truth about never-ending treatments is that they can do a number on you physically and emotionally.

Still, I know people want a happy ending. I want a happy ending. Is that such a terrible thing? 

Learn the facts. Support the cause. Know Stage IV.

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