Post #4 (10/16/17)

Here’s how I got to lumpectomy + radiation. It’s all about risk. I have a family history of cancer: maternal grandmother with breast, colon, skin, and cervical cancer, two aunts with breast cancer, and an uncle with esophageal cancer. This collection of cancers puts me in the high risk category, even though my mother has not had breast cancer and is negative for the two most common genetic mutations linked to breast cancer: BRCA1 and 2. I also do not have a sister with breast cancer, which lowers my risk, but then again, I don’t have a sister at all, so I’m not sure how my non-sister actually factors in. I should say that my mother is the youngest of eight. She had hairy cell leukemia, now in remission. There’s an awful lot of cancer in her family.

My surgeon looked at all this history and urged genetic testing. He wanted me to, as much as possible,  work with facts to determine my personal level of risk, which would determine whether I would havelumpectomy + radiation, or a prophylactic double mastectomy. The ultimate goal is to bring down my risk of recurrence and eliminate the possibility of having the cancer spread to somewhere else in my body. But I also don’t want to undergo major surgery—which a double mastectomy is—unless I absolutely need it.

The genetic test results came back early and the news was all good: thirty-four cancer-related genetic mutations were tested and I was negative for all of them. 34 up, 34 down—I’m clear.

This is huge. It changed my whole risk profile, putting me at normal risk for a recurrence of cancer, not higher risk due to heredity. Normal risk. And normal risk to me suggested normal treatment, standard treatment, i.e. lumpectomy and not mastectomy.

But the right choice for me only fully became clear after I imagined my choices in terms of the game show Let’s Make a Deal. Door number 1: Pay Now with double mastectomy. Door number 2: Pay Later with disease recurrence necessitating a double mastectomy. But then there was also door number 3: Don’t Pay At All or treat this breast cancer and never have breast cancer again. The genetic counselor told me that over twenty years I have an 85% chance of getting door number 3.

Of course, there are few sure things in life. At any point I could end up at Door number 2. I could have a series of false positives and worrisome biopsies that make me wish I’d picked Door number 1. But I’m putting my faith in Door Number 3: Don’t Pay At All. It helps to know that the odds are now very concretely in my favor.

Posted on October 19, 2017 .

Post #3 - (10/12/17)

I now have a treatment plan! Oh my goodness. It feels like ten years have passed since my breast cancer was diagnosed. It’s only been a month, almost to the day (official diagnosis was made Sept. 13), but it feels longer. Much longer. About ten years.

But now I have a plan. I will have a lumpectomy with radiation next Friday, October 20. It’s outpatient surgery and I had the pre-op testing done yesterday. Everything came back normal. I consented during my initial office visit.

How did I get to lumpectomy?

When I was first diagnosed it felt like being hit with a tidal wave of fear, a wave so big and powerful that it would knock me down regardless of how firmly I tried to stand in place. In other words, I was terrified, which actually passed fairly quickly. In the place of the terror, though, an insidious, ordinary kind of fear took over. It seemed to perch on my right shoulder. It is not disruptively intrusive, but omnipresent, even though my prognosis, as I’ve already said, is good. 

My breast cancer is estrogen and progesterone receptor positive, HER2 (human epidermal growth factor) receptor negative. It has a growth rate of 2% and my lymph nodes look clear on the ultrasound. In terms of prognosis, all of that is good, fantastically good. But you put that up against cancer, the idea of it, the threat implied in the word “malignancy,” and the good is not enough to salve that fear. My cancer is very treatable, but it’s still cancer. It’s still cancer.

I’m not afraid, but I am. I’m not worried, but I am. My surgery is Friday, October 20, at which time my very competent surgeon will cut the cancer out of my body. And I think that afterwards I will feel better. Maybe even normal. My body will be in pain, but with the tumor removed perhaps my mind will unclench. At least that’s what I’m hoping for—that the fear will be removed with the cancer.

There’s more—more to the story of how I got to lumpectomy—but I’ll have to explain later. For now there’s the worry, the preoccupying worry. The worry and the fear that never go away, but may be excised along with my tumor. I hope, hope, hope that’s what happens. Because my mind’s been clenched, or so it feels, for ten long years. And I’m ready, so ready, to stop being quite so afraid of this disease.

Posted on October 13, 2017 .

Post #2 - (9/29/17)

I reached the point one day recently where I wondered why I had cancer. Not in a self-pitying, Why me? kind of way, though there’s nothing wrong with asking that, but as more of an ontological question: a question of being. I don’t see myself as someone who gets cancer, who has cancer. Of course, every person who has cancer must feel the same way. The category of people-who-don’t-belong-in-the-cancer-category is singular: me. I don’t get cancer. And yet I did.

Perhaps all serious diagnoses are like this. Thank goodness I’ve never had another one to compare. Maybe all bad health news comes with a feeling of, how can this be happening to me? Maybe even all bad news in general. 

For me, though, the cancer diagnosis feels personal. Because I’ve worked in oncology, written about oncology, given oncology patients chemo, held patients’ hands after they got bad news, cheered them when they went home healthy, and worked to keep them comfortable as they died, I felt like I knew cancer: who it likes, who it doesn’t, where and when it may strike.

But cancer has no likes or dislikes, no preferences for place or timing. Cancer simply is: aberrant cell growth resulting from mistakes in gene transcription. Cancer means that something went wrong, not just at the cellular level, though that’s where it is malevolently acted out, but at the chemical level. It’s no more personal than yeast making bread rise, or bleach killing harmful bacteria.

I remember a patient with cancer who had a fair amount of cancer in his family. He asked me one day, tentatively, why that might be. Bad luck, I told him, because ultimately, that’s what it comes down to. 

And then I think about all the amazing things in my life—my three healthy kids, my supportive husband, that I get paid to write, my work as a nurse—and I realize that’s the same genetics at work, in some ways the same kind of luck even. The Medical Director of the hospice where I work told me we all get the hand we’re dealt, and the wisdom of that expression is just beginning to sink in. Cancer sucks, but overall life has given me a good hand. I have cancer and I have my life, and whatever cancer can and will do to my body, it cannot erase what already is my life.

Posted on October 2, 2017 .

Post #1 – (9/25/17)

There is no way to say this, but to say it: I have breast cancer. That is bad news. The good news is that I have the most common kind (invasive ductal carcinoma) and the pathology report showed that the cancer is very treatable. I’ll explain more about that another time, and I will be using this space to post treatment updates, news, thoughts. 

I’m not sure how often I will post, but please don’t assume that silence means bad news—it may only mean that I have gone to ground for awhile. I also will be on social media very little. Look here for news.

Let me say first that switching from nurse to patient is difficult. I had this idea that working in oncology, and then hospice, would protect me from cancer. That was wrong, which I knew intellectually, but now I know it for real. Denial: it works until it doesn’t. 

The treatment plan is still up in the air, pending the results of further tests. None of it will be fun, but I also do not think it will be terrible. I’ve seen terrible in cancer diagnosis and treatment, and while “not terrible” may seem like a low bar, I’ll take it. I will do what I need to do to save my life. If that sounds melodramatic, forgive me because, unfortunately, it is true. But what is also true is that my prognosis is good. Say it again: my prognosis is good. Cancer is now a fact in my life, but so is my good prognosis, and I try, as much as possible, to keep that fact in mind. Say it again: My prognosis, at least right now, is good.

Posted on September 26, 2017 .