New Normal


Eight months ago, I received a phone call from a scheduler at UCSD’s Breast Imaging Center. My routine mammogram, which had been done the day before, was deemed abnormal. They wanted me back for more screening—ASAP. That day marked the first chapter of my breast cancer story. This afternoon I completed my last radiation treatment. While I have yet to meet with my medical oncologist to receive a prescription for Arimidex, there is not much more for me to do but wait, recover, and hope for the best. I was actually surprised to learn my doctors don’t have a surefire test to determine whether they got it all. Instead, they intend to follow me for a few years to make sure I remain cancer-free.

It goes without saying cancer treatment precipitated a dramatic shift in my routine. Now I’m finding it strange to think about returning to my regular schedule. I can never completely be the person I was before I was diagnosed, though I suspect I worked through a positive transformation, even as the healing process harmed me physically. At the risk of sounding trite, life does feel more precious. I hope I never again take for granted the time I have left. I do suspect the heightened emotions I continue to experience over this challenge will become muted as they fade into a bad memory. Still, I’d like to refrain from dropping the ball on the rest of my life.


Radiation Therapists at Moores Cancer Center celebrating my “graduation.”

Breast cancer did help me take stock. As I’ve faced the possibility of dying too soon, writing has become the one calling asking for more attention and commitment. It is an area where I still feel unfulfilled, though I’ve had some minor successes that have kept me in the game. In the end, I’m not sure what sort of milestone I need to feel like I didn’t blow it. I’ve just decided to ratchet up my intention and stay on target with some new goals. During the last eight months, I was often too paralyzed to do much at all. Yet eight months is a long time. When I did have the wherewithal, I organized my writing business by developing a list of tasks that might help me get my work more fully off the ground. I’ve already begun to attack some of these projects.

Meanwhile, I’ve begun to wonder if my body will fully return to where it was eight months ago. I did pretty well with the chemo and radiation treatments, but I am noticeably weaker. Case in point: during the summer of 2015, I was climbing Cowles Mountain (1594 feet) every few days wearing a full backpack in order to train for a trip on the John Muir Trail. I could do this without stopping, though I usually took a water break. I doubt I could climb this modest peak pack-free right now. I can get a good walk in on the beach, but hills are quick to remind me of how much stamina I have lost. I certainly plan to continue participating in activities that will improve my strength and endurance, though I suspect patience will be paramount as I work through radiation fatigue and the residual effects of chemo. Besides, I no longer know what my true limitations are. I do know I’m not yet ready to accept a new normal where my fitness is concerned. At some point, I’ll have to put my recovery measures to a test by hitting the Cowles Mountain Trail and seeing how high I can climb.

How Breast Cancer May Derail the Voice Break Epilogue

In the spirit of lifelong learning—in the spirit of chasing a 10K as an aging adult—I began to work on my singing at the age of 46. I studied it fairly consistently until I was diagnosed with breast cancer. I am now 54. My reasons for getting started are chronicled in a long poem, Voice Break, which is mainly about the foibles of an adult new musician (and a little bit about learning to write poetry).

Voice Break covers the first two years of my voice lessons. By the end of the poem, the singer—moi—has just completed a semester of singing with the Cuyamaca College Choir (in El Cajon, California). I continued to sing with them for another semester and then moved to their sister college to work with the Grossmont Master Chorale. I now have more than 8 semesters of college choir behind me. During those years, I also studied singing with a voice teacher, Esther Jordan.

I am not writing this piece to make any claims about my voice—though my singing has improved. I’m revisiting this thread of my life because cancer treatment may drastically change the quality of my sound. As I move from the chemotherapy unit to radiation oncology, I find myself wondering if I should continue singing when and if my life returns to normal.

Singing did help me feel better during the first two months of this ordeal. I practiced when I could, though not every day. I knew it was time to stop when I began chemotherapy. This was mainly because my medical oncologist put me on steroids in an attempt to ward off an allergic reaction to the infusions. I was pretty certain the steroids would wreak havoc on my vocal cords, and I did get some validation on this hunch. Around the time I was taking the steroids, I was told my speaking voice sounded different.

In addition, my medical oncologist warned me the Taxotere/Cytoxan infusions I ultimately faced would probably force me into menopause. She turned out to be spot on. The chemicals quickly shut off my reproductive system, as if to close that valve with one big yank. Though this was a side effect of the chemo, it was an outcome my doctors wanted. Overexposure to estrogen is the likely reason for my breast cancer. If my reproductive cycle starts up again, my oncologist plans to shut down my ovaries with a monthly shot. Granted, I would have dealt with menopause if I hadn’t gotten breast cancer. I’ve just been thrust into the change rather abruptly. I don’t know how this shift in hormone levels will affect my singing.

So now I beginning six weeks of radiation. Fortunately, I won’t be taking any more drugs for a while. However, they are radiating the lymph nodes above and around my clavicle, along with the incision sites. I did wonder if this would harm my voice box as my lungs are at risk for minor damage. My radiation oncologist has reassured me my vocal cords should not be harmed by the radiation treatments.

There’s more. Once I am completely finished with the three big cancer treatments – surgery, chemotherapy, and radiation – it is likely I will need to take Arimidex for five years to ward off breast cancer recurrence. This may be the most important leg of my treatment, according to my medical oncologist. The cancer came on pretty fast. I did ask her if Arimidex affected the singing voice in any way, and she said she’d never heard anyone complain about this.

I recently added some light singing practice sessions to my routine. As a cancer patient, I’ve learned to engage in anything that makes my daily existence seem normal—it’s easy to feel as if one has dropped out of life during the treatment process. Singing practice does evoke memories of a healthier being. It is also a joyful act, which can only bring on unseen benefits. So far, my voice doesn’t seem overly different, though I haven’t yet tried to record it to find out if my sound has changed.




Break Between Cancer Treatments

A lot of people blog about the writing life. That was my intention when I first put up this site, which was actually designed to promote my work. Like everyone else, I thought I’d share my thoughts about writing as I finished pieces and ultimately sent them out. It wasn’t long before I broadened this aspiration to include any topic, not just writing. Push-button publishing provided a reason to come up with polished pieces—to see how far I could take short essays without turning to an editor. I quickly learned blogging is also a great way to work on facing one’s goofs and imperfections!

My most recent posts focus on cancer and recovery—I’ve been housebound for four months. When I was first diagnosed with breast cancer, I hoped I might take advantage of my convalescence and get some writing done. That possibility quickly eluded me. After I learned I had a few positive lymph nodes, I experienced a fair amount of fear over what was coming. Chemo treatments brought on foggy thinking and genuine discomfort. The best I could do was stick to my goal of one blog post per month. I also chipped away at a poem about what else… breast cancer. It’s a long poem.

I had my last chemo infusion a few weeks ago—radiation is next. It will be roughly three more months before my life returns to normal (knock on wood). I’ve been doing everything I can to improve my chances of living cancer free for a long while. Aside from following my doctor’s orders, I take walks, eat well, and stay connected with people. Yet I’m getting cabin fever. It didn’t help that chemotherapy slowly brought on an aversion to my own home. I began associating my couch and environs with the chemicals running through my veins in a way that made me blame this living space, albeit irrationally, for what I was going through. I was willing to head almost anywhere—to get away from here. Fortunately, I’m coming out of the chemo cave. Chemo brain has already faded. Even better, I don’t have to be back at Moores Cancer Center for a few weeks. They’re giving me a breather.

I’ve just begun to feel well enough to revise an old novel manuscript. I’d actually planned to work on the project during the spring, but it was waylaid by this health drama. When I finally did pull the manuscript out, I wasn’t sure if I would connect with it. Yet I found myself digging right in, occasionally going into the zone. As the hours passed, I experienced some much need optimism. I began to muse, “Maybe I won’t lose anything.

I probably couldn’t have started a new novel during this time. I believe I have forward flow on the old one, because a lot of the work has been done. The scaffolding is in place, and that allows me to focus on style, plot, character development—new ideas. I don’t have to fight a story that’s not coming. I can play with this one to my heart’s content. So far, a sense of accomplishment has punctuated each writing session. That doesn’t always happen, believe me.

I hope to have the stamina to keep up this pace as I deal with radiation. Even if I don’t, I expect my newfound momentum will hold up during the impending break between treatments. It doesn’t matter how well I’m actually doing with the revision process. I’ve needed to feel passion for something in the middle of this upheaval, because chemotherapy dulls just about everything. Indeed, I’ve been yearning for a taste of what I was like before I barreled into this ordeal.

Cancer’s Mental Nadir

The other day I wistfully read AAA’s San Diego Westways from cover to cover. Though the rag offers some alluring suggestions for those about to pack their cars, I don’t normally need it to plan my summer. I’m usually on the road by now, headed to my second life on the Oregon Coast. Yet I willingly entered someone else’s summer, because imagination will have to do this season. My own summer will be about cancer treatment.

I’m afraid my imagination has also transported me back to my 30-something self, a woman who never pondered death or, for that matter, how aging would begin to change things. She was in her prime, enjoying the beautiful city of Seattle, seat of many adventures. I don’t usually wallow in nostalgia, wishing I was some other version of myself. Mainly, I’ve cherished the phases of my life, the different challenges I’ve worked through as I’ve gotten older. I like facing the unknown when a new chapter commences and rejuvenates my curiosity. Yet a longing to go back in time surfaced in me acutely one morning. I wanted to step into that 30-year-old’s blissfully unaware shoes.

It’s become harder to remember my normal life. Pleasant fantasies are one thing, but veering into psychological moments that bleed into the dark is a hazard chemotherapy patients need to negotiate. We’ve all heard people natter on about how antiquated chemotherapy seems, particularly in the face of modern medical wonders. As a cancer patient undergoing this adjuvant therapy, I’ve already reached an emotional nadir—I’ve found this course of treatment absolutely ridiculous, and I’ve truly wanted to quit. However, after going over the details of my personal situation with my doctors, and conducting some research on my own, I’ve become convinced I am not enduring this therapy in vain.

Early on I saw I would need to fight for emotional well-being during my treatments, particularly chemotherapy. My first round of chemo was the toughest from a mental standpoint. Physical discomfort brought on psychological discomfort. I received that infusion still in shock over the fact that I was dealing with cancer at all. It was only when I figured out the hardest days would eventually shift into days somewhat easier to manage, that I could begin to accept what was ahead of me.

Even so, my emotions have been riding closer to the surface ever since it was first suggested I might have breast cancer, over four months ago. I am still surprised when I feel them prod, reminding me of what I am going through. The other night I found myself crying while I was watching How to Make an American Quilt, a movie I’d seen years ago sans one tear. I didn’t see this as a bad thing necessarily—catharsis is healthy. It just wasn’t like me, and this, of course, made me speculate, “What’s happening to me?” Sometimes I wonder if wellness will ever return, if the clouds will lift.

This sort of gloom demands some conscious work. I try to remember the despair will eventually shift. If a dark mood doesn’t seem to be going anywhere, nudging one’s willpower is of the essence, even if it seems to be cowering. There are activities and exercises that can move the clouds. Getting started is the hardest part. I’ve forced myself to take a walk when I’ve wanted to do nothing. I’ve sat in mediation. I’ve met a friend for a matinee when I didn’t know if I’d feel like staying for the entire show. Indeed, I’ve discovered it is important to schedule regular outings, even if these activities feel abbreviated and not as satisfying as usual. I guess I’ve come to see cancer as a set of tests, physical and mental. The body learns how to deal with chemicals dripping into a vein for a period of more than three hours at a time. The mind discovers places of new resilience.

That said, there are days when all I can do is endure the fact that it doesn’t feel good. There are times when I just listen to the birds. When I do find myself experiencing a little more well-being in the face of chemical abnormality, I try to savor these bites of life. Not to draw to heavily from How to Make an American Quilt, but I’ve been stringing these moments together, constructing a net that will shore up this trial. When things do go back to normal, maybe I’ll discover some uncommon gratitude.

Surviving in the Chemo Cave

We humans like to organize things. First we have to figure out what we’re facing—then we work on making it easier. It’s no secret chemotherapy is daunting. During my initial consult with my medical oncologist, and subsequent sessions (one with a nurse practitioner, one with a pharmacist), I was handed a stack of informational sheets outlining the problems I might endure: low blood counts, diarrhea, heart palpitations, shortness of breath, bladder irritation, constipation, nausea, vomiting, mouth sores, bone pain, fatigue, depression, hair loss, fluid retention, neuropathy, infection, poor appetite, loss of fertility, nail changes, and finally, garden variety pain.

Everyone is quick to offer reassurance—encouragement that does not feel overly comforting in the face of this list—suggesting each person handles chemotherapy differently. They are also quick to add, “Most people don’t experience all of these side effects.” Fortunately, this point has proven to be true for me (so far, anyway). I’ve probably experienced 11 of the 20 side effects noted above. With the exception of hair loss, none of these side effects has lasted, though they can recur when the next infusion cycle comes around.

The first week was a shocker, though. During several bouts of despair (I’ll check off depression here), I wondered how I was ever going to handle eleven more weeks. Yet by the third week, I was learning some side effects slowly lift. Week 3 in comparison to week 1 was much more, well… not fun, but at least livable. It included moments of gratification.

Now that I’m beginning the third week of the second cycle, I’ve noticed I’ve become bolder about testing my limits inside the chemo cave. For example, one morning I was feeling pretty terrible. All of my instincts were leading me to the couch for the day. Though it felt like a risk, I forced myself to attend a gentle yoga class. I couldn’t believe how much better I felt after the class was over. The fact that I was an active agent in this shift from misery to relative comfort, made me feel more in control for a change.

Not all of my experiments have worked out so well. On another occasion, I talked a friend into taking me to a breast cancer support group. I quickly discovered I wasn’t ready to hear about situations that had gone on and on. I didn’t want to hear about treatments that sounded worse than what I was dealing with. Nor was I prepared for the reality of what might happen if my medical provider didn’t get it all. Perhaps a breast cancer newbie group would have worked better. Then the discussion could have focused on the immediate shock of cancer, as well as strategies for dealing with what happens after the first diagnosis.

In the end, two strategies have proven paramount to me for survival in the chemo cave. The first includes designing an abbreviated way of structuring the day. I’ve developed a list of activities I can do some of the time for relatively short periods. These include, submitting my writings to publishers and literary agents, gardening, housework, meditation, yoga, walking, reading, writing, television, and movies. During the first week of a given cycle, I can’t do many of these things. But as the cycle progresses, I begin adding a few to my day. If I can get through 4 or 5, the day goes by faster. It also feels more fulfilling.

I do try to notice if my ambition is spiking. The way I see it, the point is not to try and be as productive as I normally am. The point is to add structure and variety to my day. So I don’t garden for more than 30 minutes at a time. My walks run 30 to 60 minutes, depending on how much fatigue I’m experiencing. I take long breaks between some of these activities, occasionally napping.

My second strategy has been to figure out what truly offers momentary pleasure. I must admit, during my cancer-free days, I reached for food when I needed to feel better. In the chemo cave, food is unappealing, and it truly feels weird to be unable to “medicate” myself in this way. As an aside, in order to eat something, I’ve had to figure out what will go down easy—I’ve consciously worked at eating a balanced and nutritional diet. However, eating does not make me feel better.

Yet there are seemingly insubstantial moments—moments I wouldn’t normally find so satisfying—that have brought on a sense of contentment. Weeding, for example. Showers and baths. Imbibing in cherry iced tea at Soltan Banoo. Attending a matinee with a friend (matinees are recommended over evening shows, because there are usually less infected people in the theater). I’ve learned to watch out for the little things that make me feel better, even if my mood is short-lived.

While all of this may sound obvious and easy, it’s not. It takes effort to stay organized when one is fettered by such limits. It takes effort to discover activities and approaches that might make a difference for one’s physical and mental health. During my first cycle, I wanted to sleep all of the time, but this has been discouraged by my medical provider because it disrupts the normal sleep cycle. Thus I have worked harder to stay off the couch during cycle 2.

Yes, it’s tough to remain connected to the world during a course of chemotherapy treatment. One’s place in the world becomes a reason to fight at all.