Archives for category: Breast cancer

Five years ago today I was told, “You have cancer.” I had been looking forward to the possibility of this 5 year mark, holding at “no evidence of disease.” I had a mammogram recently that was normal. So, I am at “no evidence of disease”.  Unsurprisingly, having had two heart attacks in the past four weeks has dampened the party a little bit.

Nonetheless, I am going to give my 5-years as a survivor its well-earned appreciation. There were a lot of highs and lows packed into the last five years. I’ve written about nearly every one of them in this blog, which I started immediately after my diagnosis. My blog turns five years-old today, too.

When I chose the title for my blog, “My Eyes are Up Here”, in part, I was just trying to be clever. But I was also communicating the fullness of my life. When I got breast cancer, the rest of my life didn’t just stop. At times this was a great burden. At other times, it was the best thing about my life.

I have learned in these five years that I am not completely defined by my cancer. I am also not completely defined by my heart problems.

My eyes are still up here.

I have been working half-time this week, following what turned out to be two small heart attacks. As I wrote previously, the current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD). It is infrequently diagnosed and mostly seen in women in their 40’s to 50’s, physically fit, and with few or no heart attack risk factors. The cause is unknown. It is possible for dissections to heal so I am taking a number of medications to improve my heart functioning as well as to prevent the formation of blood clots. I have follow-up tests and lots to learn about heart functioning.

This was a shock, to understate things. Just two months ago, my husband and I were in Southeast Asia. We were walking through ruins in extremely hot conditions, just as we’d done when we were in our 20’s, on our honeymoon in Egypt during the summer. During the vacation, I was really pleased by the health of my body and what I was capable of doing. I thought of trips that John and I could take in the future.

Yesterday, I had a mammogram. It was normal. My 5 year “no evidence of disease” anniversary is in two weeks. This is big news that has been upstaged by my heart. In the past, I have compared cancer to a natural disaster. It can happen to anyone, no matter how virtuous. I am re-thinking that metaphor, at least in my experience. My breast cancer was more like a failed safety inspection. The treatment was to prevent a disaster. One of the harder aspects of breast cancer treatment is that it made me feel sick when I hadn’t felt sick.  The heart attack was like a natural disaster, a small earthquake followed by an aftershock. They caused damage to my heart. The medications I am taking now actually seem to be making me feel better.

Today, I have no work responsibilities or health care appointments. I am taking care of myself. I am listening to my body. Yesterday, it told me that taking a walk with a friend was a good idea and it was. Today, my body told me to sleep in. It has also told me to spend a lot of time resting on the couch. Finally, it has told me to take pause and check in with my thoughts and feelings.

One thought that passed my mind was, “I’m still healing from the cancer and now I have heart problems.” I felt the urge to cry “foul!” (And it would have been fine if I had.) My next realization is that I have always been healing from multiple wounds.

We are all healing from multiple wounds.

Be kind to yourselves, friends.

Don’t turn away. Keep your gaze on the bandaged place. That’s where the light enters you.
-Jalaluddin Rumi

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As many of you know, I have been taking pottery classes for the last year or so. I typically throw (make forms using a pottery wheel), rather than hand build. Learning to use a pottery wheel is challenging. I am still learning how to center the clay on the wheel head, consistently. There are all of the steps to remember. Even if one carries out the steps, there are lots of variables that impact how fast the wheel should go at each step, the amount of water that should be added during throwing, the amount of pressure applied by each hand, the positioning of hands and fingers, and the speed at which the hands and fingers should move up the clay. On top of that, the type, size, and hardness of the clay is another variable to be considered. Finally, there are shaping tools that can be use. There seem to be about 5 million pottery tools in existence. One type of tool can have so many variations. People who are very experienced know not only how to use the tools, which requires finesse, but how to select the best tool.

When I first started throwing, nothing really turned out. That is normal, I am not being overly self-critical. Then every once in a while something would turn out and I couldn’t figure out what I’d done differently. I like bowls, so I threw a lot of bowls. I decided I wanted to be able to throw a salad bowl. Clay forms shrink about 7% from the time they are thrown to the final firing so the initial throwing is of a larger than desired piece. For me, a salad bowl is a pretty big bowl, and it certainly was when I was a beginner. Nonetheless, I was inspired by the challenge to throw “a big bowl”.

I had enough success with big bowls to keep me going for awhile. I have to say objectively, I have big bowl-making potential. There were a lot of flops, though, not to mention many bowls that cracked in the kiln. None of my bowls were made with an intention to make anything but a bowl. I do not yet have the skills to plan size and shape ahead of time. Okay, more accurately, I do not yet have the skills to implement the size, design, thickness, etc of the bowl I have planned in my head.

One quarter, after thinking I would just keep realizing my “big bowl potential”, I made flop after flop. I made bowls that were of uneven thickness or that were not round, or that were not level on the rim. I made bowls that looked so so promising as I pulled up the sides to make them thinner and thinner, only to collapse in on themselves on the wheel. More than an hour’s work and all I could show for it was a wet mess on the wheel and sore throwing muscles.

All through the process, I read about bowl-making. I watched Youtube videos on “big bowls”. I watched my teacher’s bowl-making demonstrations, which she typically did once per quarter. Each time, I learned something new and tried to apply it to my big bowl-making. Then I gave in to the idea that had been lurking in the back of my head, which was to make little bowls. They are faster and easier to make. I could focus on my technique. I started making little bowls and my bowls started getting more refined.

Last week, I met with my psychologist, Rebecca. It was the first time I’d seen her in a while. As I mentioned last week, I’ve been dealing with some challenges related to stress and my heart health. I brought Rebecca two of my little bowls as a gift. We had a productive session.  I have some work to do in my life. Physically, my healing from my cardiac event is not an linear as I’d like. There are fits and starts. My diagnosis is undergoing refinement as my physicians are gaining more information. The current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD) a rare condition, caused by a tear in an artery wall. Some blood flow is diverted to outside of the artery wall, lowering blood flow. Further, blood that gets outside of the artery wall is more likely to clot, which can press on the artery, narrowing it. SCAD is present in men and women, however, when present in women, they tend to be in their 40’s and 50’s, physically fit, and with low risk of heart disease. What causes these tears is unknown.

My prognosis is still good but there is uncertainty as to the length and course of my recovery in the upcoming weeks. I have resumed a practice I started right after my breast cancer diagnosis, five years ago, which is to meditate about 10-15 minutes per day. I’ve had to temporarily cut back on my walking until my heart heals so each day I do the little bit that I can do.

I just learned that Doris Ann Price, stage 4 cancer patient, breast cancer advocate, mother, wife, dancer, and inspiration for the M.A.C. lipstick shade, “Lady Danger” died today. I met Doris Ann on social media, struck by her smiling face and ever present “cancer sucks” button, attached to a black beret. Doris Ann conveyed the horrible facts about breast cancer as well as her bright and ebullient spirit. Despite one of her tumors, which gradually left her unable to speak, Doris Ann’s voice, in her writing and actions, was clear.

I met Doris Ann in person a few years ago when I was visiting North Carolina for my graduate school reunion. At the time, she lived in Raleigh. We met at an arts and crafts gallery in Carrboro, NC and had lunch together. Doris Ann was a petite woman who moved like the dancer that she was. This was remarkable to me as she was quite ill even then and in her late 60’s. Her appearance was also one of an artist from her bright red lipstick, hip eye glasses, black and red clothing, and black beret. Doris Ann wore large artistic jewelry.

Sometimes Doris Ann could come across as almost unbelievably positive on social media. I can tell you that Doris Ann’s positive spirit is real as was her intelligence and realistic grasp of the gravity of her health. She also shared with me some personal pain in her life. Doris Ann was as real as can be.

Doris Ann enjoyed a beautiful relationship with her husband, Aaron. She had two loving children, Sharon and Roger. They have my heartfelt condolences.

Doris Ann led a full life with every breath. She worked hard to find effective treatment for her self. Doris Ann worked hard for breast cancer patients, past and present, everywhere.

Thank you, Doris Ann, for your friendship and leadership.

Love,

Elizabeth

Between 2012 and 2014, I had 9 surgeries; three of them were to remove cancer and the other six were to patch up the damage. Not all of my surgeries were major, but nonetheless, I spent a lot of time in a hospital gown, with my ass hanging out. I am outgoing in many ways and have been for the most of my life. However, I also spent the first 46 years of my life being fairly modest when it came to revealing my body. For example, I did not wear a swimsuit for years, because I was very self-conscious. Medical visits were another thing. I didn’t mind that so much. But when it comes to surgery, it’s different. My body was on display to a parade of people whom I did not know. Even worse, you know how I am a child psychologist and see patients and their parents for a living? Some parents work at hospitals. My hospital. To see people I knew from the community, in my role as an expert and a leader, with my ass hanging out, could have been mortifying.

Guess what? It was not mortifying. It was merely embarrassing and not gravely so. This is because, I used my mindfulness practices to stay in the present and to try to keep those thoughts that make a stressful circumstance into a mortifying one, at bay. For example, instead of focusing on how embarrassed I was and what must a person from the community think of me, I focused on her kind treatment of me. Further, the more times I was “exposed” both literally and figuratively, the less difficult it became. It was less and less embarrassing.

I feel grateful for the way I was able to cope with this. It may have been quite different earlier in my life. One of the things this coping taught me is an appreciation for my body and far less embarrassment about it. Any embarrassment I have now about wearing a swimsuit in public is really manageable. It doesn’t keep me from enjoying myself. I don’t worry about my appearance when I encounter people in the community on the days I am not in the office. I am comfortable going around town with no make-up and wearing work-out clothes. If it is raining, you will see me in a rain hat with ear flaps. It’s not cute. It’s functional. It keeps me doing the things I love to do, like taking long walks during every season of the year, which also benefit my physical and mental health. Those things are more important than being cute. I am free to be who I am, even the facets that are not cute, without embarrassment.

I have also noticed a significant decrease in my embarrassment, more generally. I used to get so embarrassed when people sang “Happy Birthday” to me. I felt very self-conscious even though on some level, I enjoyed it. Last Thursday was my 51st birthday. It was also Thanksgiving. Seventeen of my loved ones sang, “Happy Birthday” to me. For the first time in my life, the only feelings I had were purely positive. I felt happy and joyful. I thoroughly enjoyed it, smiling the whole time and being able to make eye contact with my well wishers. What a marvelous power to be able to absorb and appreciate love from my friends and family!

I have been thinking a lot lately about the power of acting in spite of embarrassment or fear. We are in times when this power is of utmost importance. Our country and culture are divided. Oppression and hatred were a problem before and now are more so. I was reading an excellent article, Eight Ways to Stand Up to Hate, published by the University of California-Berkeley’s Greater Good Action. One of the recommended strategies is “practice being conspicuous”. For example, walk around the neighborhood in a funny hat. The goal is to learn to tolerate the discomfort of being conspicuous so when we are in the presence of a stranger in need of help due to hateful acts by others, it will be easier to act and not freeze, the latter of which is a natural response for many.

These are times when it is natural for many of us to try to be careful about everything. To worry. To look for problems in everything. To accept only the perfect solution when none exists. “I don’t want to support x cause because it does not solve every problem.” We need lots of efforts and strategies to make this world a better place. Some of our efforts will only help the tiniest bits. Others will fail.

To fail by not trying is not a way I choose to be.

As always, peace to you friends.

As you can imagine, I am still reeling from the U.S. election results.  Like many have written in other blogs, my reaction was much like being told my positive breast cancer biopsy results in May 2012. A major difference is that in the case of my cancer treatment, I felt very well taken care of by competent healthcare providers. I also had relatively clear choices to make.

No, I am not saying that the election was worse than cancer. I actually don’t know.  I don’t know what will happen to my country and the world. I don’t know what my health will be like in the future. We just don’t know the future.

A lot of people has commented that the election “woke people up”. I would say that it woke some people up the way hearing a bomb blast would. Others have their eyes open, their sleeves rolled up, and are following a clear purpose and direction.

I am in neither of those groups. I am, however, trying to follow a process in mindfulness, to be awake but at ease. This means observing pain, emotions, and even thoughts in as much of a grounded way as possible.  I have had moments of being mindful and at ease since the election. That is not most moments. But I continue to practice my meditation to cultivate compassion, to be aware in the moment, and to be as active and constructive as I can be.

It is tremendously difficult but even in those moments of balance, the results have been tremendous. Those moments provide me with hope.

May I be awake. May I be free from suffering. May I be at ease.

My you be awake. May you be free from suffering. May you be at ease.

Peace.

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Last week at the U.S. Presidential debate, I saw a women interrupted 51 times in 90 minutes by one man. I hate being interrupted. Actually, some interruptions are fun, the kind that you exchange with a friend with whom you share a great deal of empathy and can finish eachother’s sentences. Those interruptions show the strength of connection and intensify it. The interruptions I hate are the ones that change the subject, argue, and contradict. Repeated interruptions are like a salvo of little assaults that compromise one’s ability to share thoughts and feelings.  Interruptions are jarring and for me, they take me away from myself, at least where I was and where I wanted to go.

For many breast cancer patients in the U.S., October, “Breast Cancer Awareness Month” is an unwelcome interruption. Many people are active in advocacy for breast cancer research as well as for increasing access to quality healthcare. These are critically important concerns. Then the pink tsunami comes in and interrupts with new messages, one of using a disease as a marketing tactic and wrapping it in “awareness” a construct, which is vague and inoffensive. For those of us who do think about the word, awareness, thinking, is not enough. Awareness solves nothing once everyone is made aware and nothing else happens.

Breast cancer itself, was a major life interruption. I was 46, going about my middle-aged life assuming that my only health issues were that I was overweight and not exercising enough. Bam! Cancer! There were two years of starts and stops. Cancer treatment brings many interruptions.

Those of you who are regular readers of this blog know that I strive for integrity in my life, the sense that the parts of my life contribute to my whole self, in a way that makes sense. This contributes to a sense of balance. There is a teaching in mindfulness that the past, present, and future are all part of one’s being.

I continue to accept cancer as part of my past, my present, and my future. Even if I never have a recurrence, the knowledge of the possibility is still there.  Cancer is part of me but not all of me.

Watching the debate reminded me that the best way to handle an interruption is to keep going instead of just stopping and let the interruption take over.

Life interrupts, keep moving. You may need to make course corrections but you are still going forward.

On May 25, 2012 I walked into the Swedish Cancer Institute for the very first time.  I had learned of my breast cancer diagnosis the day before and I was there along with my husband and my friend, Nancy, for a consultation with the physician who would perform my first three breast surgeries, two lumpectomies followed by a right-side mastectomy.

I remember a few things from that morning. One of the strongest memories I have is a feeling of surprise when the physician’s assistance asked me to step on the scale for my weight. To me the word, “consultation” meant “talking” and that’s what I had expected. To relieve the tension, I joked, “I have to get weighed? That’s worse than having cancer!”

Granted, I was joking but as you know jokes come from some where. Who among us have not felt defined by a number, our age, our weight, our grades, or our annual income? Most of us have at one point or another, defined ourselves this way.  And the definitions can come with a great deal of negative judgment.

As a researcher and clinician, I also know that numbers can serve as useful data. There are two properties of measures that are important in yielding meaningful data. One property is the validity of the measurement tool. A valid measure actually measures what it is intended to. When I stand in front of the ruler on the wall of the doctor’s office, the ruler actually measures my height. However, not all measures are valid at all. For example, when I walk out the door in the winter time it sometimes “smells like snow”, meaning that I am detecting something in the air that to me is the odor of snow.  This predictive measure, as it turns out is not very accurate. It is not a valid measure of snow potential. I don’t even know what I am perceiving that makes it “smell like snow”.

The scale can be a useful measure. But is it a valid measure of value as a person? No, a scale, a good one anyway, is a valid measure of weight. It is not a valid measure of general health because general health is not defined by just body weight. It can be a factor in health but it is not all-encompassing.

Just like people say, “age is just a number” it can be tempting to deal with the judgment that comes with weight and just conclude that “weight is just a number”. This implies that it has no meaning or usefulness.

My weight has been creeping up steadily over the past year. I am almost to the weight that I was before I lost my last 40 pounds, nearly 4 years ago. Based on the way my clothes fit, I can tell that I am not as large as I was at that time, I assume because I am more muscular than I was then. But I am noticing that I am able to wear less and less of my wardrobe. I’ve gotten noticeably larger.

I did a great deal of work on my body image when I was going through cancer treatment. I learned to appreciate what my body does for me. I have a positive body image. I feel strong. But I also know that having had estrogen and progesterone responsive breast cancer that it is important that I maintain a healthy amount of body fat. Right now, it is clear that I have too much.

I’ve known this for awhile. Behavior change, developing new habits, and re-developing old good habits is really difficult. Every once in awhile I get to a point at which it seems harder to continue doing what I am doing than motivating myself to change. Last week, I asked my husband to start going to Weight Watchers meetings with me. I had been doing their online program  on and off for the last 10 years. Since I have not been following the program for awhile, I thought going back to meetings might be helpful. My husband has been having a lot of back problems and I thought that his losing weight might be a positive for him, as well.

He agreed. We went to our first meeting the next day, which was last Sunday. Three days down, many to go.

Measures can help guide me to follow my intentions and commitments in life. They don’t define my worth.

 

The U.S. has some of the best cancer care in the world and I live in one of the areas known for excellent treatment. However, accessibility to healthcare is not consistent. I was treated and continue to receive follow-up care at the Swedish Cancer Institute, which is part of Swedish Medical Center.

I am really lucky. My physicians, from my internist, to my breast surgeon, to my medical oncologist, are all top notch. The staff at my cancer center are excellent. Although hospitals are no place to rest, the care I received at the hospital during the four surgeries I had there, was exemplary whether during the day or in the middle of the night. My healthcare providers communicated with one another. I had access to my healthcare record online but I was not responsible for managing the sharing of those records. Last, but not least, everyone I interacted with was friendly and polite, with little exception.

Being cared for by competent and professional people within a functional healthcare system was one of the best experiences I’ve had in my life in terms of feelings cared for. I am a caretaker. I started babysitting when I was 10 years old, I am a mother and a wife. I am a healthcare provider.

I was active in my healthcare but I had a lot of trust in my physicians and followed all of their recommendations. It was always made clear to me that my physicians were making recommendations but that the ultimate decisions were mine to make. They were clear, however, about the potential pros and cons of each treatment option, which is part of a healthcare providers job as well as of their legal and ethical responsibility to patients.

Cancer treatment is exhausting. Although I.V. chemotherapy and radiation were not recommended for me, my treatment was still taxing. The main part of my treatment took over two years, which involved nine surgeries, two years of Lupron shots, ongoing Tamoxifen treatment, countless blood draws, scans, pathology reports, and anywhere from 3-5 doctors’ appointments per week. Although I took off time to recuperate from surgeries, I worked throughout that time and had family responsibilities, most notable helping rear a teen daughter who was having one Hell of a tough time with life.

Because I had excellent care, I was able to relax at times and let my caregivers take care of me. I could lie in the ocean and float like a jellyfish, trusting that the surf would take me where I needed to go. I don’t recommend the “jellyfish method” as a general way of getting through medical treatments.

Exhibit A. The surf took this jellyfish to land.  A jellyfish can survive out of the water for less than an hour. They can’t swim or move themselves. It takes well longer than an hour for the tide to come back in to where the jellyfish have been stranded.

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My friend, Beth Gainer, MA, had a very different cancer treatment experience. Acting like a jellyfish even for brief periods could have threatened her physical well-being and most certainly damaged her psychological health. I’ve been reading Beth’s blog, Calling the Shots, for a number of years now. She has bravely waded through rough waters inhabited with unbelievably rude physicians and unhelpful administrative staff. Fortunately, she was able to secure some physicians who, as she says, she “loves”. For this, I am very grateful but I am angry and sad about her other experiences. Cancer is hard enough!

The path to good care was not easy or smooth for Beth. At times, advocating for care in a dysfunctional system was downright ugly. But she did it! Using her experiences as a guide, Beth has written, Calling the Shots in Your Medical Care. This short book contains practical tips for assessing the quality of your healthcare providers, suggestions for speaking up, and finally, strategies for being “a bad patient”, one who speaks up and forcefully, when necessary.

Just as there is no one way to navigate through cancer or any other serious illness, there is no one way to navigate through your healthcare. But if you find that you have lots to say and don’t feel empowered to say it, this is the book for you. Beth found her voice in her cancer treatment. You can, too.

I have been focusing on intention in my last few months of mindfulness practice. There are certain practices that I would like to do more of, for example, mindful eating. I have made goals to increase my use of my Weight Watchers tracking since this is a good way for me to make mindful decisions about what I eat throughout the day and checking in with my body more regularly about when I am hungry. (I have a habit of undereating during the day and then snacking a lot after dinner as if the floodgates have been opened.)

Setting an intention has a different emphasis than does goal setting. In the latter, the emphasis is on outcome rather than experience. With intention, the emphasis is on the process, the experience. Honestly, I am often not able to keep this two constructs separate. But that’s where I am right now. I have set the intention to be more mindful of the difference in the course of my daily life.

May and June are typically very busy months for my work. I scheduled even more heavily than usual this year, for financial reasons. I am making some changes in my business model in the upcoming months, which I expect to have a short-term negative impact on my income. Added to that stress is my worry about the U.S. Presidential race. And oh yeah, I have a husband and daughter, who is working to graduate from high school in the next couple of weeks.

When I am feeling a lot of stress, I find myself making lots of goals and not following them. Recently, I have been using the word, “intention” in my mind. I have been walking regularly for almost four years now. There are some periods of ebb and flow in the distance and frequency of my walks. In the past few weeks, I’ve found myself less motivated and having a harder time getting myself to do long distances. It seems that there are pressing issues that I “should” be addressing at work or at home.

Today I was out on my walk. I thought to myself, “I intend to walk four miles.” Then I thought, “Well, maybe just 3 miles. I have a report to write.” I walked for awhile and thought to myself, “If I follow my intent today, I will have an easier time keeping promises to myself.” I walked the four miles and there was no more internal struggle.

As a breast cancer survivor and a person who wants health and peace in my life, following my intentions and commitments to self-care is really important.

 

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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