Post #13 (9/19/18) - The last one for a while...

The best news of all: my first-year mammogram showed that I am cancer free. Wonderful! I actually found out last week. It’s a slow, and therefore strange, kind of relief—as if I had been holding my breath ever since my diagnosis one year ago and I’m still not sure it is really OK to breathe. The fear that a cancer diagnosis generates is, I now understand, akin to the skin darkening that comes with radiation treatment: it fades slowly over time and may never completely go away.

My response is to live my life. I don’t have any other option, but how I live now feels like a choice. What do I want to do? The first big choice I made was to return to clinical nursing. In July I started back at my old job as a per diem nurse in home hospice. I usually work two days/week and it has been great to be back with my old team. I work with the most fabulous nurses, and our patients are wonderful, even when they drive me crazy. There’s nothing quite so humbling as spending time with people who know their death, or the death of someone they love, is more or less imminent. In our polarized, highly-politicized world, a dose of humility is always good.

The second choice I made was to write a book about having cancer. It’s not a memoir of my disease per se, but an exploration of what it was like to be an oncology and hospice nurse and then become a cancer patient. Over this past year I learned how little I, the nurse, actually understood about what cancer patients go through emotionally and physically. I learned how terrifying the word cancer is when applied to oneself. I learned the power of honest explanations, the importance of always telling patients the full truth about the effects of treatment.

So, I’m going to be working on that book, which is still coming together as a proposal, and not writing more on this blog. Some might say that ending on post number 13 is bad luck, but after cancer my notion of superstition has been upended. There’s good luck and bad, and each of us hopes for more of the former than the latter, but often we have no control over either. We are, none of us, ever just the sum of our luck, but cancer makes it hard to believe that. Every time I see my internist he says, “Stay healthy.” Yes, I’ll try. And meanwhile, I’ll be writing.

Posted on September 19, 2018 .

Post #12 (5/22/18)

Normal. My college friends and I, imagining ourselves as decidedly worldly, often declared that “nice is not enough,” meaning that people needed to be interesting, edgy, neurotic even to really be worth knowing. Believing that normal is overrated would probably be the updated analog. Who wants to be normal in a culture that prizes speaking up and standing out? Well, um, me.

Having cancer has made normal intoxicating, rare, special. Normal means I spend my weekend planning bike rides and putting off yard work instead of thinking about cancer. Normal means I talk to the kids all the time, but not about my cancer. Normal means I’m not in pain from surgery, rashy from radiation, or feeling turned inside out because Tamoxifen. Normal means life without cancer.

Of course the cancer hasn’t completely left my mind—I take Tamoxifen every day so I can’t say that I’m done with cancer or cancer treatment. And I will have my follow-up mammogram in August, a follow-up appointment with the surgeon (actually, his PA) in October, and a follow-up appointment with the medical oncologist in November. But why think about any of that until the dates arrive? If my cancer diagnosis taught me anything worthwhile, it would probably be that I now truly understand that worry does absolutely no good. Life happens despite our anticipations, hedges, or attempts to bargain for something better, because that’s normal, too—the unexpected.

The cancer diagnosis was unexpected. How could it be otherwise? But then cancer became normal, or at least took the place of so much of my normal life that I then had to find a way back to my true normal.

And right now I’m at the beginning of that effort. I feel the texture of normal in my life, which is to say I feel the absence of the fear of cancer. To be in the present and not be afraid—I think that that’s where normal starts.

Posted on May 23, 2018 .

Post #11 (3/12/18)

Getting back to normal life after cancer requires more effort and thought than I anticipated. We’re all familiar with the idea of the “new normal,” a phrase that first made sense to me after our son was born in 1996. But in that case the new normal was about adjusting to a welcome, although quite disruptive, change in our lives. There is nothing “welcome” about cancer.

I made some decisions to help myself along in the return to normal. I wanted to live more of my life offline this year so I deactivated my Facebook account in January. I will come back to it eventually, but for now I like the mental quiet that being away from it provides. I’m still on twitter, and am trying to figure out how to use it for news and updates without feeling overwhelmed by its never-ceasing stream of information.

A big decision I made was to postpone my return to clinical work for at least several months. I actually resigned my position and turned in my computer and my equipment. I am welcome back at any time, and sometimes feel antsy to return. But then I have a day when I get slammed by the fatigue that I associate with Tamoxifen, and am so glad that I do not have to battle that fatigue while also caring for the dying.

The decision about work really came down to wanting to only have one job for awhile and I chose writing. It’s confusing, because I’m the kind of person who in the past has always gained energy from bouncing one part of my life off another: writing-clinical work-motherhood-activism-public speaking. I wonder if cancer is what I’m bouncing off of now. It certainly seems that way physically, and emotionally and intellectually, too, I guess. I hate to use cliches, but the best way to explain it is to say that cancer casts a long shadow. There are times when I escape it, when I stand in the light and am so glad to be alive. But then something reminds me: the fatigue, the stiffness in my right shoulder that comes and goes, my off-and-on inability to control how hot or cold I feel, the odd effect of wine no longer tasting good to me. All that, I guess, is the new normal, and a good friend who’s an oncology nurse practitioner told me it just takes times to adjust.

So, we went hiking on the Appalachian Trail for a couple days last week (it was Pitt’s spring break). I was worried I wouldn’t be able to keep up with my husband and daughters, but the first day we covered ten miles, and the second day we did six, and I was fine. It was hard, but I did it, and felt good afterwards. Maybe that’s the secret to the new normal: it’s hard, but you do it anyway, one foot in front of the other, over and over again. I stopped to catch my breath on uphills, complained when my feet hurt, and felt unpleasantly buffeted by the unexpected West Virginia cold, but I kept going, until, one step after another, the hike was done, and I was ready for another new day.

Posted on March 12, 2018 .

Post #10 (2/18/18)

Wow! I’ve written ten of these. Something about that feels significant, though it probably isn’t. But it is nice to realize that blog posts accumulate just like days since diagnosis. Time passes and does heal all wounds eventually. 

It still feels like I’m wanting the time to pass more quickly, though. The post-treatment fatigue is mostly resolved, but now I’m getting used to Tamoxifen. Tamoxifen is the selective estrogen receptor blocker (SERM) I will take for the next five years. I take it because my cancer had estrogen receptors, meaning that estrogen helped it grow. The idea behind Tamoxifen is that if any cancer is left in my body, then blocking the receptors for estrogen will starve it of an important chemical food it needs and I’m all for starving my cancer.

I tend to do pretty well with drugs and told myself that Tamoxifen would be fine, but the start was rough. I had a hot flash that lasted about three days and then I had stomach upset that lasted for a week. One morning I woke up with the worst headache I’ve ever had. It went away in a few hours, but the pain was intense. I had brain fog, fatigue, forgetfulness. 

Now my biggest problem is chills: out of the blue I can feel feverish and shivery, or just unusually cold. The symptom struck me as so strange that I eventually googled it and found out, to my relief, that other women have this problem, too. I read an article on the phenomenon and discovered it is not well understood because no one studies it. Both Memorial Sloan Kettering’s and Mayo Clinic’s websites say to call my physician if I have chills on Tamoxifen, so I’ll do that tomorrow, even though I don’t think the chills are a serious problem.

The reason all this matters to me beyond the obvious physical discomfort is that it makes me feel like I am still a cancer patient. I don’t call myself a “survivor” because I don’t feel that label really fits since I’m still being treated for breast cancer. Still, though, my cancer has been surgically removed and irradiated. I should be able to say that I had cancer. The reality is, I’m in cancer limbo—the purgatory of Tamoxifen. That’s a much better place to be than cancer hell, but it means I’m not done managing the disease and won’t be for another four years and eleven months.

The time will pass, though, and what is important to keep in mind is that so much of life will happen, too. My son will graduate from college this summer and his sisters will, too, three years later. I hope I will have finished a third book by then. My husband will likely be done being Department Chair and have returned to being a Professor of Physics. Our dog will be a lot older (for a dog, that is) and our rhododendrons will have gotten taller. We may even have a new President.

No one wants to be in purgatory, but patients in cancer limbo can still sample the joys of ordinary life. I’ll try to focus on all that, on the life that is happening, even as part of me keeps impatiently waiting for the Tamoxifen time to pass.

Posted on February 19, 2018 .

Post #9 (1/31/18)

I finished radiation on December 23, started Tamoxifen, the estrogen-receptor blocker that I will take for five years, on January 1, and now we arrive at January 31. Fatigue from the radiation came on right around Christmas. It’s…odd how some radiation oncologists say there is no physiological reason for the fatigue. My own rad. onc. Doc said that, but then also said there is a theory that the fatigue from radiation comes from cytokine release. And if you google “radiation fatigue cytokines” several articles come up that theorize a link between radiation treatments and release of cytokines and fatigue. FYI: Cytokines are small proteins used for cell signaling and are part of the body’s immune response. 

Why are women told there is no reason for them to be tired, when the experience of fatigue following radiation seems to be close to universal?

That’s just part of the cancer puzzle I’m in the middle of figuring out. Basically, I’m asking myself, what did this experience mean to me? And then I feel that calling cancer an “experience” is already at one remove from the reality of it. 

Trying to understand, I find myself returning to Antoine de Saint Exupéry’s lovely children’s book The Little Prince. The page below is my favorite part of the entire book. The narrator, having just learned about boa constrictors and their unusual eating habits (consume animals whole; digest at leisure), draws a boa constrictor that has eaten an elephant. He shows it to “the grown-ups” and they misidentify the drawing as a hat. Then he draws another picture in which the boa constrictor is transparent, making the elephant  clearly visible inside. The grown-ups still don’t get it. 

Le Petit Prince.png

I’m stuck because attempting to understand the experience of cancer feels like a boa constrictor slowly digesting an elephant. But part of me wants to think the whole thing is only a hat. It’s the cancer hat, sure, but you put it on for awhile and then take it off: cancer leads to treatment—et voilà, no more cancer, and then I get to take off the hat. In the back of my mind, though, I’m pretty sure that having cancer is not like wearing a hat. I’m pretty sure I will be digesting this experience for a long time. I’m pretty sure that having cancer is very much like swallowing an elephant.

Posted on January 31, 2018 .