Post Election Blues


A cataclysmic shift in my personal life seems to be running parallel to the end of an era. As Donald Trump and Hilary Clinton were battling on, breast cancer knocked me out of my routine. I eventually returned to work, only to wonder if I should seriously think about retiring. Age 54 is early for such musings—though not necessarily for a cancer victim who does not yet know if the cancer is completely gone.

Case in point, I watched my father eagerly move into his retirement when he was in his early sixties. Not long after that, he lost his life to leukemia and pretty much missed out on this passage. If I want a retirement at all, it may need to be now. I’ve got books to write, places to see, and people to spend time with. I’ve also been feeling the need to revamp habits that might be shortening my life—to become disciplined in ways that have often eluded me (yoga, meditation, singing, diet, and exercise). While I’m already feeling pretty good, memories of the weakness I endured during cancer treatment tend to surface and remind me these days are precious. I am now acutely aware of how physical well-being is dear. I may not have a lot of quality time left. Then again, I may defy the odds and live to be a healthy octogenarian.

Breast cancer did prompt me to follow the election more closely. My couch became a second bed, a place to crash when I wasn’t feeling well. Based on what I saw on television, I did not envision the outcome that actually occurred. I’ve been happy with the focus on equal rights and opportunity for all—kindness toward all. I want the country to keep working on that. I want America to become more compassionate and less catty. In my opinion, our country is too self-indulgent over unkind speech. It’s entertaining in a way, but it’s not loving. I do believe we are on this planet to transform our hearts. As a serious Zen student, I try not to participate in left-right, back and forth quipping. I’m not beyond it—I’ve done my share. This election season, however, I decided to make it a practice to refrain from picking on those I don’t agree with. Hand in hand with that aspiration came another centered on trying to note moments of judgement and anger over what others were saying. A judgmental attitude also pulls me away from developing a loving heart.

I have joined a conversation that occurs – not every moment – but here and there. Cancer survivors sometimes need to talk. The increase in breast cancer occurrence – the occurrence of all cancers – has become sobering. I recently finished my first breast cancer walk. I found the ritual whimsical and fun. I reveled in the opportunity to wear a Survivor T-shirt, and to see this word reflected on the backs of others. I enjoyed the spark in the air, the celebration, the happiness I felt around me. Diseases like breast cancer bring people together to express their better selves.

It’s hard not to add up the recent negatives and whine, “Why is this happening to me?” America’s political story is not going the way I’d like it to. Neither is the story of my life. Yet breast cancer has brought on surprising moments of inspiration, insight, and love. It has helped me strip away anything that has begun to seem insubstantial in the face of tougher challenges and limited time. I don’t always have to pack as much into my day. I try to give attention to things that matter. I’ve also been giving myself permission to breathe and take in the scene around me. Sometimes just listening to what is going on is enough. This sense of moving in slow motion may still be a side effect of cancer treatment that will go away as I return to 100% (should I be so lucky). Perhaps I’ll eventually stop finding such meaning in simpler moments and dive back into to crazy-busy mode. Or maybe it really is time to move toward the retiree mentality. Either way, remaining fully alive is my latest goal.

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.

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.