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.

Chemotherapy and my New Look(s)


During a “Chemo Teach” session, meant to prepare me for my first infusion, I asked my nurse practitioner if I should just shave my head before I got started—or wait until I saw a hag in the mirror. As a perimenopausal woman, I’m already down to a lot less hair. I never had thick tresses to begin with.

My friend Pam, who has been supporting me through my treatments, actually suggested a hair shaving party. She thought I could invite a few friends over and come up with some kind of ceremony before bringing out the electric razor. The remainder of the event could be devoted to a modeling session, giving me an opportunity to choose a few good scarves and hats. She’s a former oncology nurse, so she’s in the know about stuff like this. While I could see the appeal, I nixed the idea, telling her I’d already given my hairdresser a heads up. I was just waffling over when to make the appointment. I knew this question paled in comparison to questions like, “When do I take the steroids necessary for my first infusion?” Still, I was letting this one get to me. Secretly, I wanted to get it over with.

Instead of a party, I was thinking I could show off my new wig (compliments of the American Cancer Society) during my last – happy – dinner out with friends. I’d been warned not to eat anything I loved during the first few days following an infusion, as I might always associate this fare with the nausea sure to come on afterwards.

I was happy about the free wig. Three months of chemotherapy did not seem to warrant an expensive hairpiece. I knew I wasn’t likely to wear a wig when my cancer treatment was over (unless not enough hair grew back). Besides, I didn’t hate the idea of scarves, hats, or for that matter, a bald head. Yet I noticed the Cancer Patient and Family Resource Center at UCSD Medical was offering wigs and head coverings to cancer patients. While the selection wasn’t great, I found one that would do in a pinch. I thought, “Why not?” This would leave me with a choice of four new looks to play with over the next six months: bald as a monk, wrapped in an edgy scarf, dapper with a hat, or displaying a wig in a new style (for me).

In confidence, I don’t think I’ll make a good baldie. Some people with no hair do look elegant or cool. Some enjoy accessorizing with a “Who cares what you think? attitude. I could try to “practice” with no hair in the way a monk does, work on being less attached to vanity (I am a Zen student). I could adopt that same attitude with the scarf look. I find hats stylish, a fun option. The wig “will do.” Right now I have longer hair, but I’ve sported shorter hairstyles before. I suspect I won’t care about any of these looks, because I probably won’t want to leave the house very often. Though on good days, I do want to feel I can spend time in public.

My nurse practitioner wasn’t wild about the idea of shaving my head before it was necessary. She thought it would be too extreme—that I needed to ease into this, as I’d be dealing with a number of other shocks during the early weeks of chemo. “Your head will get cold,” she added. Thus the question was settled. I don’t have to go through my last good weekend exhibiting one of four new looks. I’ve got a little more time to be myself before accepting the tether of cancer treatment. It will probably change me for good.

Special thanks to the American Cancer Society and the Patient and Family Resource Center at Moores Cancer Center.

My appreciation to folks in the Grossmont-Cuyamaca Community College District for the new hat and turban.



Facing the Cancer Marathon

I was first exposed to cancer’s terrible reach when I saw the film, Brian’s Song, a story focused on the fate of football player, Brian Piccolo—he died of testicular cancer. The movie came out in 1971, though I’m not sure when I actually saw it. It could have been a year later (I would have been ten). I still remember the shock of this drama hitting my tender child’s mind. It seemed like an exotic tragedy back then, one that only happened in the movies. Any revelation that someone around us had cancer was viewed as sobering. It was rare. Usually, the person was not expected to live.

Now I have cancer, and most people believe I will survive. I probably will. Since my suspicious mass was first discovered 7 weeks ago, I’ve been told numerous cancer stories—stories about how people existing within 6 degrees of separation have gotten through their trials and are now thriving. The cancer drama is no longer exotic. It is no longer rare. It has almost become a rite of passage.

It’s still cancer.

It is easy to look at the numbers, not to mention the possibility of medical treatment as fine as a brand new Cadillac, and shrug. So and so just worked through that. I, myself, have had this reaction more than once. Given the current cancer statistics, I think it’s a fair one. Unfortunately, cancer’s ubiquitous nature does not prepare the patient for the magnitude of the marathon she may be facing. It’s still cancer. And it’s still hard.

This is not to imply people are brushing me off—quite the contrary. I’ve been touched by the offers of help, the gifts—the good wishes, thoughts, and prayers. Kindness matters, of course, but it’s strange to be the focal point of this sort of attention. You want it, and you don’t want it. You think about what you will need to do to pay it all back.

The first few weeks of cancer testing wreaked havoc with my emotions, cranking them up on the inside in a way I’ve never quite faced before. I kept telling myself, “So and so got through it.” But the body has its own wisdom. The body has its own way of overriding the mind to make its message loud and clear. A killer is present. I’ve decided to take heed of this – to me – surprising sense of vulnerability and see what I can learn from it.

My surgery is already becoming a distant memory. I am currently resting and waiting for the next line of treatment. My surgeon has told me I’ll be facing radiation. The possibility of chemo still exists. Though the initial psychological intensity I experienced has finally become muted and seemingly more normal, it still shows up at regular intervals, reminding me not to take anything for granted. Everything in my life is going under the microscope. Yeah, yeah, I know. All those other cancer patients went through this, too.

I was already moving toward a major life change before I received my diagnosis—I’d been feeling the need to shake up my career and begin a new phase. These explorations are now on hold, because change has grabbed me. I don’t know what my life will look like after this is all over and I feel healthy again. Wellness needs to be my focus and this could ultimately include some new decisions regarding the way I have designed my life. I suspect I’ll have a couple of months to allow insights and ideas to bubble up as I’m dealing with the nitty-gritty of cancer treatment. Meanwhile, it doesn’t hurt to listen to the birds, walk, dip into mystery novels, and watch spring arrive in my backyard. A wild bunny has been camped out there of late

How many mammograms do I really need?

Last month I wrote about a strange vision problem, one that required an appointment through my medical provider, UC San Diego Health. I was pretty freaked out by this temporary impairment of vision, so getting the appointment nailed down was paramount, and I did a lot of hand wringing until the issue was resolved. Around the same time, I remembered my annual mammogram was due. I decided to line up that appointment too.

UC San Diego Health offers an online service called MyUCSD Chart. I wasn’t exactly sure when I’d had my last mammogram, so I signed on to get the date. In doing so, I discovered my next mammogram was not due for another year. They seemed to have changed the frequency from annual to every two years. I wondered if this had something to do with my insurance company. Then I recalled the recent news story about how the U.S. Preventive Services Task Force had revised their mammography guidelines.

I am now 53, and according to their new guidelines, I should be getting a mammogram every other year. More controversial, I guess, is their recommendation that women wait until they are 50 before they even start this screening process. The Task Force does offer a caveat: women over 40 who feel they need mammograms, should receive them.

I hate mammograms, and I’ve wondered more than once if I could get away with less screening. I was sorely tempted to go with the recommendation in MyUCSD Chart and allow two years to pass before I went in again. I reasoned, I was pretty stressed out over what had happened to my eyes, and I didn’t need to deal with this right now. Yet I also had a letter from UC San Diego Radiology reminding me about my annual screen—I decided to just call them.

My lumpy and dense breasts have received medical scrutiny since I was in my early thirties. I was living in Seattle in those days, and at some point my former doctor decided I needed a fine needle biopsy to determine what was going on with a particular lump. This most painful procedure revealed a cyst. My doctor then recommended I begin having annual mammograms. Monthly self-exams were also suggested, something I ultimately struggled to pull off.

When I was in my late 30s, another doctor—this one on the Oregon Coast—went over my mammogram results and recommended a stereotactic biopsy. I was sent to Eugene for this procedure, which resulted in a couple of chips being placed in my right breast. The biopsy was negative.

This saga of mammograms continued after I moved to San Diego. Because I have dense breasts, I am occasionally called back for a follow-up ultrasound, so it is often a two-shot deal for me. Last year, a follow-up mammogram and ultrasound were recommended. While I was having the ultrasound, the technician chatted with me in a cheerful manner, noting how I had dense breasts and how mammograms can’t reveal everything clearly in my particular case. When the results came in negative, I wondered if I was dealing with too much screening.

So this year I had the same question. Did I really need so many mammograms? I didn’t hate the fact that MyUCSD Chart was recommending every other year for my mammogram. I put in a call to UC San Diego Radiology, happily prepared to say, “Okay,” in the event that the scheduler said I needed to wait another year. However, she put me on the books.

This time, things were different. Normally I receive a letter informing me about the recommended follow-up mammogram and ultrasound. Yet this time they called me the next morning and got me in that day. This time the ultrasound technician offered no commentary as she conducted the session. She did take a lot of screenshots. And this time, she scanned my lymph nodes, something I’d never experienced before.

It was a whirlwind from there. Not long after the ultrasound was over, the interpreting radiologist came in to inform me I had a suspicious mass. A biopsy was scheduled for the next morning. Meanwhile, the radiologist told me a surgeon was on hand and would be willing to talk to me right then. I was barely catching my breath when this surgeon walked in to discuss what would probably happen if the mass was cancerous.

As I waited for my results, I received a lot of advice. For example, I know two former oncology nurses. I also communicated with a few breast cancer survivors. It is my impression that people are up in arms over breast cancer screening and breast cancer treatment. There’s a lot to digest, and a lot conflicting ideas about how much screening and treatment is truly necessary. I did tell people the surgeon thought my case would probably require a lumpectomy and possibly radiation. I told them she’d reassured me about the cosmetic side of things. She didn’t think it was likely I would lose much tissue or that it would mar my appearance much. She thought my prognosis was good.

I certainly wanted to collect advice from knowledgeable people, but I found the process upsetting. I was asked how big the mass was (I’d neglected to collect this detail). I was asked about my mother’s breast cancer. What kind did she have? Did she receive genetic testing to ascertain if she had the abnormal genes linked to higher breast cancer risk? I was told, maybe it’s a tiny cancer that will go away. Maybe I didn’t need to do anything. I also learned the trend right now is to save the breast as opposed to jumping to radical surgery. On the other hand, I heard from one breast cancer survivor about how a tiny cancer had been discovered by her doctor. They ultimately cut away a fourth of her breast to treat it. I learned about several women who didn’t want to risk recurrence. They chose a double mastectomy. I ended up with a spectrum of viewpoints and options to consider, but I was no longer reassured (my surgeon had originally done an excellent job in this regard). I worried I wouldn’t make a good decision about the course of treatment I should ultimately follow, if I happened to be dealing with the big C.

I now have the distinction of being the first UCSD Health patient to have a cancer detected by their new tomography process. I went through this imaging session the morning after my routine mammogram (before I was moved into the ultrasound room). As I held still in the usual uncomfortable mammogram position, the machine arced over my breast and took a number of shots along the way. My surgeon showed me how this image compared to an image taken during the original mammogram session. The mass is indeed clearer in the tomographic image. While it has been classified as small (roughly two centimeters), it is not tiny. The possibility of leaving a tiny cancer alone became moot because I have invasive lobular breast cancer and it must be dealt with.

My surgeon also informed me that lobular breast cancer is less common than the ductal variety. It is more diffuse and less easy to detect. She went on to say she couldn’t help me make a decision about my treatment plan until I underwent an MRI to determine if other areas were affected. The test was scheduled for the next day. I had over a week to wait before my next appointment with the surgeon.

Meanwhile, I was lined up to work with a genetic counselor. I had no idea what to expect from this session, though I vaguely thought they would draw blood and quickly test for the two gene mutations linked to higher breast cancer risk, BRCA1 and BRCA2. I felt I needed to know if I was a carrier, because women in this situation often decide on a double mastectomy to reduce their risk of recurrence and, ultimately, terminal breast cancer.

I should note, the possibility of developing breast cancer a second time quickly became the strongest focal point of my ruminations once I received my diagnosis. I figured my surgeon and her team would do a great job helping me to become cancer free—odds of my survival were placed at 90%. But because my father had dealt with three cancers (he died of leukemia), and my mother had struggled with two, I figured this was potentially a first round for me. Yet I could barely stand to think about a double mastectomy.

There’s something about UC San Diego Health that makes me think of the world that was envisioned when I was eating Space Food Sticks and drinking Tang. It has materialized. The medical provider seems to come up with new solutions before your eyes. To my surprise, the genetic counselor went over a list of not 2, but 17 genes they could examine to give me a sense of my risk for recurrence. These genes could also point to other cancers and, no doubt, numerous other problems.

My heart sank when I learned it would take 2 to 3 weeks before they would have my test results. The genetic counselor seemed to notice my impatience, and she asked if I would actually choose the bilateral mastectomy if I did test positive for either gene mutation. At this point, I communicated balking with my entire being. What she said next startled me. She said my test results could also be viewed as evidence that I needed more comprehensive screening for breast cancer once I was cancer free. She said, if I started getting an annual mammogram and an annual MRI, as well as swift treatment for any cancer that might emerge, my odds of survival would be roughly the same as those I’d be facing if I underwent a bilateral mastectomy. Thus if I knew I wasn’t going to choose a mastectomy no matter what my genes revealed, I could go forward with the lumpectomy before my genetic test results came in.

The next time I saw my surgeon, I questioned her about what the genetic counselor had stated regarding more comprehensive screening versus a bilateral mastectomy. My surgeon qualified this information by noting that women in their forties may have a better outcome with the bilateral mastectomy. For me, however, it was more likely to be a toss-up.

It’s been almost three weeks since I had my routine mammogram. In three more weeks, I will receive a lumpectomy. I’m also expecting to undergo radiation therapy. I’ll probably have my genetic test results by then, though I don’t expect to ask for a different course of treatment. In any event, I’m no longer worried about how many mammograms I’ve had in the past—or how many I will have in the future.



Foggy Lenses

The diagnosis was this: sunscreen bleeding into my eyes and ultimately soaked up by my contacts, which I’d worn for hours in the bright sunlight. That’s what caused a noticeable loss of vision, albeit temporary, after I spent a couple of days in Joshua Tree National Park. I’d thought my contacts were in need of cleaning. This often happens when I drive long distances. My contacts become clouded, and I either clean them at the next rest stop—or replace them with my glasses. But this time, when I finally took my lenses out, I wondered if I had a second pair on, a pair that was foggy. I’d accidently done this once before. It was the first explanation I could think of for the fact that I could not see well with my glasses on.

Denial sinks in quickly when your eyes are threatened. I told myself it wasn’t that bad. How could it be? I tried to drive home and was forced to stop in Palm Springs. I spent the night in a hotel with plans to go to the emergency room in the morning if the problem didn’t clear up (two friends, both former nurses, were on alert). Maybe I should have gone in immediately, but I thought perhaps my eyes were dilated. I thought perhaps I just needed to get to a darkened space, because I’d been in the bright sun for hours. I also thought of snow blindness. Maybe this was like that. After denial comes fear, which blanketed me for a couple of hours until I saw improvement. I was finally able to sleep, and in the morning my eyes seemed fine.

The Oregon Coast, especially during winter break, is the antithesis of the desert. I take my daily walk, summiting Horizon Hill and begin hiking down the other side. The sun rests just above the trees and the dark road. For a brief moment, rays hit my eyes at an angle making it impossible for me to see anything but black where the road should be—how it descends sharply and becomes treacherous on a frosty day. I walk a little further and can make out the pavement, the dark conifers on either side—still presences—and the lack of sunlight beneath them. This same forest buffers the upcoming curve. What cannot be seen in the depths where trees are is loudly present, perhaps beckoning.

I have been given the go-ahead to wear my contacts on a limited basis. I should not apply sunscreen above or around my eyes. Instead, I should wear giant sunglasses in the sun and a hat. Regular doses of fish oil and rewetting drops have also been prescribed. I am glad to have these tiny lenses back—I prefer wearing them when I’m active. Roughly halfway through winter break, however, one lens develops a tear. I have neglected to throw a backup pair into my toiletry kit, something I rarely forget. I am stuck with my glasses until I return to San Diego for the new semester.

I am walking down the other side of Horizon Hill and the rain I’ve been warding off with a slicker begins coming down with a vengeance, drenching me. I put on gloves, the hood (of a hoodie) beneath the hood of my waterproof garment. My pants, defenseless, quickly become soaked. And my glasses are so steamed, it is easier to continue without them, seeing through the astigmatism that prevents my natural view from being sharp. As I continue, rainwater streams around my feet, flowing down the steep incline. Some freshwater will make it out to sea.

Stripped of my wet clothing—now hanging from a ladder, the back of a chair, and the bathroom door—I am cozy in dry sweats and a long-sleeved T-shirt. I put my glasses back in place, recline on the couch, and pause to look out the window. The rain is washing the glass clean, turning into long rivulets that stream downwards. It drums off roofs, pings back into the air in fat drops. And the rest of the world is a palette of grays, black, white waves, and steel green coming in and out of focus, depending on how the clouds are situated—the fog.

The Manuscript in the Drawer

It is weird to face a former self in the pages of a novel that never made it off the ground. I should say, “selves,” as there are bits of me in every character. I finished the first draft in 1995—the final draft was completed in 1998. I haven’t cracked this book open since the early 2000s. At that time, I couldn’t get past the first few pages. I guess I thought I’d improved. During this more recent reading, I was gentler with myself. I did make it to the end of the story—I’d forgotten most of the plot. While the manuscript is certainly not ready to sell, I found many parts worth salvaging, including descriptions of Eugene, Oregon, and environs, where the book is set.

Some might wonder why I would bother wasting precious writing time redoing something I finished when I was a much less sophisticated thinker, and less adept with my craft. Why not leave the manuscript in a drawer (as a badge of honor) and move on to spark new work born of a mind that is older and wiser? With a handful of new short stories underway, I was actually willing to do just that, but I wanted to give the manuscript one last look before I buried it for good.

As I was going over the story, I experienced a number of emotions, as well as regular cringing. Still, I came away with renewed resolve to continue working on the project. I’ve decided it would behoove me to interact with the younger me, because the younger me had a different voice—one today’s me cannot completely duplicate. I’m now curious to see what an amalgam of the two voices will look like. It might result in a book the older me could never have pulled off on her own.

I lived in Eugene between 1980 and 1988—I pretty much came of age there. I find it a very different city these days. There are lots of new student apartment complexes. The campus exterior, as seen from Franklin Boulevard, is snazzier with its sleek Matthew Knight Arena and a couple of other buildings I don’t remember. The city is now preparing – once more – to host the Olympic Team Trials in Track & Field. I was happy to hear this as a couple of my characters are runners. Eugene has moved into a new phase, but folks still love to talk about how it once was—as I have done in this novel. I’ve decided to further develop the running aspects in the book. I plan to make my characters a bit younger, transforming the genre from young adult to middle grade. Ultimately, I’d like to enhance the humor, while making it more painful and resonant.

I must admit, before I got around to rereading the manuscript, I worried about finding it banal. It does have passages that made my eyes glaze over. What was interesting about looking at the story after all of these years is that certain notes—bits that could be highlighted with the “meaningful” marker—stood out to me in ways they hadn’t before. Aspects I thought would would come off two-dimensional weren’t as flimsy as I remembered, while the stuff I’d tagged to be the heart of the narrative didn’t ring out as well. I’ll probably need to construct a different tale altogether, capitalizing on those places I feel do succeed. I did find my characters more likable than I was expecting them to be. I think I can push them further now, taking them more deeply into their struggles, angst, and happier moments.

My next task is to go over the best draft and identify what I want to retain, as I also note where the story needs to go from this earlier incarnation. I’m still happy with the backdrop. I intend to keep 1980s Eugene alive, instead of moving the town forward and mirroring what it is today. This decision could put me at a disadvantage come time to sell the story, because experts in the children’s book industry – those delineating its various forms – tend to recommend that novels be set in a timeless place—or in a most up-to-date place, one with all the bells and whistles of modern technology, which apparently our kids can’t live without.

I don’t completely agree with this line of thinking. As a child of the sixties and early seventies, I enjoyed reading children’s books set in the fifties, not to mention decades prior to that. I wanted to know what my country was like before I showed up. But this is a discussion that must be shelved until I have something worth defending. Tearing up the old manuscript and building some new scaffolding is my first order of business, now that the new year is looming and there are a few more weeks of winter break and rain continues to saturate the Oregon Coast.