Post #8 (1/2/18)

Usually it takes me forever to remember to write the new year, but this year I’m in such a hurry to be done with 2017 that I don’t even have to think about which year to write. I’ve been waiting for 2018 for weeks now.

I know many people desperately wanted 2017 to end, and for me, beginning a new calendar year makes it easier to feel that I am not just symbolically, but actually, putting my cancer behind me. That breast cancer I had? That was so last year. I mean really, such old news.

Any cancer patient will tell you, though, that the end of invasive treatment doesn’t mean the end of cancer in one’s life. My surgery and its recovery are both long over and I finished my twenty sessions of radiation on December 22, but I just started Tamoxifen, the estrogen-receptor antagonist I need to help prevent metastatic disease, and I’ll take that for five years. There are also ongoing MD visits to keep track of, issues to watch for with Tamoxifen, and of course annual mammograms. Cancer doesn’t go away, but it becomes less ominous, less present: scary, yes, but also annoying. More like paying taxes than standing on the edge of the abyss, worried, so worried, that at any minute the ground will give way beneath,  and pitch me into the darkness.

But I don’t want to end this post on a low note. It is 2018, and most of my cancer treatment and fear are behind me. 

So, back to the beginning. When I was first diagnosed I took comfort in the poetry of Audre Lorde. Lorde finished her last book, The Marvelous Arithmetics of Distance, when she was dying of cancer. Still, it is in many ways a hopeful book, and one poem in particular gave me solace when I needed it most: “Today is Not the Day.” The poem begins—Today is not the day. / It could be / but it is not. / Today is today—and ends:

This could be the day.
I could slip anchor and wander
to the end of the jetty
uncoil into the waters . . . 

But today
is not the day.

How interesting and wonderful that cancer brought me back to poetry. May all of our year 2018s bring us joy.

Today is today.

Posted on January 2, 2018 .

Post # 7 (12/11/17)

Fear. I thought I had its number. I thought we’d had a relationship, but that our relationship was over. I thought the surgeon had excised it, and that any little bits left simmering on my mental stove were safely kept under a lid that stayed on tight.

Then one day, the weekend after my first full week of radiation, the fear suddenly took on a life of its own and completely overtook me. I was helpless with fear, uncontrollably afraid . . . of dying. 

It came on so quickly, like shooting pain or projectile vomiting, that I found myself overcome in the middle of a walk in the park. I sat on a park bench and my shoulders shook as I cried. I hoped that no one would see me, but at the same time wanted someone, anyone, to come by and tell me that of course I would live for many more years, see my children graduate from college, watch my grandchildren grow up, settle into old age with my husband.

That was a Sunday. The next day, Monday, I went to radiation, and told the radiation oncologist—whom I see on Mondays—that over the weekend I became terribly afraid of dying. “That’s normal at this point in treatment,” she said. I was getting close to the end, thinking about the future, how things would go for me long-term. Apparently, the real fear hits most people at that time.

Hunh! I had no idea that an emotion that strong, that overpowering, could be tied to something as mundane as a calendar. And suddenly I felt better. I felt the fear recede because I understood it as situational: less about the reality of my disease, than timing.

This twin lesson—the obliterating nature of real fear and that it can be managed—is perhaps the most valuable insight I will gain from my disease and treatment vis-à-vis my own clinical work in hospice. I have never felt fear like that before and now I know how awful it is. But I now also know that fear can be addressed, handled, assuaged. For me it took the physician’s matter-of-fact compassion and honesty. A different patient might need a chaplain visit. For someone else, looking forward to a blow-out birthday party could be the ticket to keeping such fear away. 

We can live with fear rather than in it, and for cancer patients that subtle but important distinction nourishes our struggling hope, makes it feel real, whatever our diagnosis or prognosis may be.

Posted on December 12, 2017 .

Post #6 (11/20/17)

It has been awhile. Mostly I’ve been waiting. First I was waiting to heal after surgery, and then I was, and still am, waiting for radiation. I did the pre-screening for my radiation treatments the week before last and I thought treatments would start this week, but it will be next week. Apparently this happens—the planning process can take longer than expected. I can live with that, but just wish someone had told me.

As anyone reading this can probably tell, waiting makes me irritable. Once radiation begins I go every weekday for 4 weeks, so it is, as a physicist friend of mine would say, perturbative. But the main reason I hate the waiting is that I can only stop thinking persistently about cancer and cancer treatment once that treatment is over.

I have been reading a lot, and maybe the list of books (some for work, some for pleasure) says something, or maybe it’s an interesting kaleidoscopic picture of what’s on my mind right now. Or maybe it’s the story of how I’m filling my time, knowing that no matter what I do it won’t make my radiation treatments begin any earlier, or more importantly, end any sooner.

When I first got diagnosed with breast cancer I read all the “Miss Marple Mysteries” by Agatha Christie. They were my drug of choice. Then, pre-operatively I read The Long Walk by Brian Castner, because I thought it might help me. Post-operatively, I read Old Filth by Jane Gardam, a lovely gift from my agent—don’t let the title fool you. Then two serious books, both for work, followed the initial post-op period: Hunger by Roxane Gay; and Illness as Metaphor and AIDS and its Metaphors by Susan Sontag. There were also pop-up versions of Alice in Wonderland and Le Petit Prince, both beautiful and immersive.

And then more distraction came in the form of new gifts: The Dry a first novel by Australian author Jane Harper (thank you Bob Miller), and The Second Mrs. Hockaday by Susan Rivers, thanks to my buddies at Algonquin Books, who also sent Young Jane Young and The Leavers. I also bought another couple of Agatha Christies, and read a John Le Carre novel I got from the library along with the one Maisie Dobbs mystery I hadn’t read. I started a few books and didn’t finish them, finding them not distracting enough, or annoying in some way I no longer have the patience for. Yesterday was Paul Kalanithi’s When Breath Becomes Air (for work) and maybe today will be another Agatha Christie. I have never been a big reader of mysteries, but the sense they give of a restoration of order, of bad things being put right as well as they can be, comforts me.

So, I’m reading books about illness and thinking about it as a topic for writing—that’s satisfying. I’m reading entertaining books that make me believe in justice—that’s satisfying. The big picture of my health is good and my prognosis is excellent—that’s satisfying.

But, still, I’m waiting. 

Posted on November 20, 2017 .

Post #5 (10/27/17)

The post-op pathology report is excellent. There is no disease in my lymph nodes and that was the last unknown, the only remaining detail that had the potential to free the terror I had mostly kept controlled. There will be no PET scans, no extra radiation, no required chemo. The profile of my treatment is in the better, rather than worse category. Other good news: the margins around the tumor were clean, so I won’t need more surgery. And the tumor was less than 1 cm. They thought that, but it’s nice to have it confirmed.

Relief, when it comes, is like stepping into a cool waterfall on a hot day. You are sweaty, miserable with the heat, and then the only feeling is of wetness and coolness, the only sound the rush of water as it covers your ears. You can even taste it as the clear liquid finds its way into your mouth, because that's what water does.

Relief. Alleviation. Deliverance. It speaks for itself or it speaks not at all—it just is. 

I feel such incredible relief.

Posted on October 28, 2017 .

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 .