Archives for category: Breast cancer

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.

 

Four years ago today, I learned of my breast cancer diagnosis.

Breast cancer will always be part of my life.

It has never been my whole life.

I hope to keep it this way.

 

 

Taken at my daughter’s 8th grade graduation, about two weeks after my graduation. Even then, it wasn’t just about cancer.

Like all potters, my hands leave marks when I make forms on the pottery wheel. These concentric circles are called, “throwing lines”. Some throwing lines are faint and others much more pronounced, determined by the amount of pressure that I apply, the speed at which I move my hands, and the firmness of the clay. If I apply too much pressure and move my hands too quickly, the throwing lines are so deep and spread out that the form adopts a corkscrew shape. In these cases, it is best to just wire off the clay, dry off the wheel head, and start over with a new lump of clay.

It is possible in the making and finishing of the piece to use tools to remove or minimize the throwing lines. This results in very smooth forms. Personally, I enjoy the look of throwing lines, the ones that show that I used my own hands on the piece but are subtle concentric circles. The circles remind me of the meditative state in which I often find myself looking down at the spinning forms between my hands, working to bring shape to it, bit by bit, with more patience than I typically have, the last being a requirement of a beginning potter. Even at art galleries, I can often see evidence on a hand thrown piece of the artist’s hands. It is part of the art. It leaves the imprint of the process and a reminder that beautiful things do not come into being without work or struggle.

Teva Harrison, an American who lives in Canada, published a memoir of her life so far, as a young woman with stage 4 breast cancer. Teva is an artist and writer. She is a graduate of the Evergreen State College in Olympia, WA, from which famed cartoonists and writers,  Matt Groening and Linda Barry are also graduates. The book, In-Between Days is a marriage of drawings and short expository writings organized thematically into chapters, Diagnosis, Treatment, Side Effects, Marriage, Family, Society, Hopes, Fears, and Dreams.

I had read a number of Teva’s comics as they were published, one by one, in the online publication, The Walrus. They were quite powerful then but I find that reading the book is a more powerful and complete experience. Teva is at times funny at other times raw with great emotional honesty, and at other times, hopeful. Her comics convey a great deal in a small space. Teva’s panel depicting she and her husband learning the news that they will not be able to have children evokes the quiet isolation and grief of infertility.

Teva’s book is making waves in Canada. She is the subject of news stories and interviews. As an acquaintance of hers in the online breast cancer community, I could not be more thrilled for her. There is ongoing controversy in the breast cancer community about whether it is better to be positive or negative about one’s breast cancer experience. Although Teva’s cancer is a horrible reality with which she must deal, the work of her own hands show clearly on the work that is her own life. In a television interview, last month, Teva shared her dreams for her legacy. “I hope that my legacy will be one of enduring kindness.”

Teva, thank you for sharing your beautiful life with us.

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The “new normal” is a term used to describe getting back into a “normal” life after going through cancer treatment. I know a fair number of breast cancer survivors who hate that term. (“Survivor” is also another term with its own controversy, but I digress…) Cancer changes everything. How can anything be normal again?

I understand the complaint but I don’t share it. “Normal” means something different to me, anyway. It just means the mathematical average. (Remember, I am a nerd.) Yes, I grew up in a culture where “normal” means “good” but I was trained out of that in my education and in my clinical work when a kid says, “I just want to be normal” he/she is often really talking about feeling disconnected from others. Teens also want to be unique, special, which would be not being normal. Teens want a sense of an individual identity but they don’t want to be alone.

We are not unlike teens in this regard. They are just navigating a stressful period of growing up so there is drama surrounding the very basic human needs to have a balance between separation and connection.

It is nearly four years since my breast cancer diagnosis. I do feel that I’ve achieved a “new normal”. The new normal is knowing that life can change in a heartbeat, knock me into the air, and down to the ground. I can have up’s and downs and boring aspects of my life. I know that I can grow through grieving. I know that I can cultivate patience. I know that throughout my days so far, I can usually remain connected to my sense of self. I know that the person who is flying in the air is the same person as the one who usually has her feet firmly beneath her.

One of the most powerful lessons of my “new normal” is to take opportunities for joy and happiness when I can.

That’s today’s “new normal”. Tomorrow may be different.

I was walking in my neighborhood last week and I passed two men. One of them had a newborn strapped to his chest in one of those little baby carriers. His baby looked blissfully asleep and his father looked like he was enjoying his time with his son.

This is not an uncommon sight where I live. It was a rather uncommon sight when I was a girl. When I was young, a man changing his own child’s diaper was considered a rarity. Men played with their babies. They were not as involved with the day-to-day caretaking as they are now. Caretaking was considered “woman’s work” and therefore “beneath” a man. It still is, to a certain extent,  but there really has been a significant overall increase in men’s level of involvement in their children’s lives not to mention an increased appreciation for “women’s work”. I have been providing mental health services to families for since 1991. When I started out this meant working with mothers and their children. Father participation was not common. It is far more common now and it is rare that I never meet with a child’s father.

When I saw the man with his infant, I smiled in recognition of what our culture has gained from the women’s movement. There is still sexism. “Feminist” is still a “bad word”. But it is difficult to deny if I REALLY think about it that men’s lives have been improved by feminism. To know your children better and to be a nurturing force in a vulnerable being’s life are gifts. With the loosening of gender roles, I also think it is easier for gay men to be parents together.

Civil rights and social movements are often met with resistance, the resistance that to give up a privilege is an absolute loss. That there is nothing to be gained through change. There is a lack of acceptance.

Loss, perceived or actual, is often a sticking point. It is a place where we hesitate, trip, or in some cases, fall into a deep pit, for which climbing out is virtually impossible.

Honestly, sometimes we want to stay in the pit even if climbing out is a possibility. We struggle. We suffer. We want to be heard, seen, and felt. At other times, we deny that we are in a pit. “What, this isn’t a pit? Everything is fine.” This is another kind of nonacceptance, and it too causes suffering. Denying and suppressing loss and the grief that comes with it, is a short term solution with painful consequences. In the world of cancer and other griefs, I see this acutely.

In the world of cancer and other griefs, I see this acutely. It can be so difficult to find balance. It is so difficult to find the time and space we need to grieve our own losses and come to some kind of peaceful place with them. On top of that, there is no final destination. Grief is an iterative process, one that we must come back to over and over. This is why we can get on with life and yet not ever “be over” a significant loss in our lives.

This weekend, I have been feeling anxious. I had awful nightmares last night. I feel justifiably underappreciated by my family. However, the way my impatience has played out in my behavior is a way that increases my suffering as well as that of my family.

I came back to my well-spring. I did a sitting meditation and I am sitting her with my own thoughts and feelings, writing this post. I can feel myself letting go of hurt and anxiety. I am not quite solidly balanced, but I am getting there. I am nurturing myself and it is radiating within. When I leave this office and rejoin my family, I am hoping to radiate compassion toward them, as well.

As I mentioned in my last post, I let my home office turn into black-hole during my cancer treatment, and it stayed that way until I cleaned it a couple of weeks ago. I found that is was a bit of an archeological site. Everything my former cat, Ollie, had knocked off of the desk onto the floor and then batted way underneath, were still there. Ollie died shortly after I began cancer treatment, coincidentally from metastatic cancer. I thought of the fact that he’d touched the pen caps, binder clips, Post-it notes, and push pins. I thought fondly of him, but I didn’t have trouble getting rid of the pieces that were garbage and putting the rest of it away.

At the bottom of a pile on my desk, I found the folder in which I kept my cancer paperwork, labelled, “Cancer 2012”.

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I opened the cover and saw a set of post-surgical instructions. I also saw Explanation of Benefits forms from my insurance. A year ago I many have put it back on the top of my desk thinking I might “need” it some day. That day, however, I threw it into the recycle bin and made a plan to write about it, as I am doing right now.

Another thing I found was the tote bag I was given by the Swedish Cancer Institute with their name and logo on the side. For the first several months of treatment, I carried a binder, also provided by Swedish, containing all of my pathology and blood work reports separated with tab folders, “Initial diagnosis”, “Lumpectomy #1”, “Lumpectomy #2”, “Mastectomy”, “Oncology reports”, etc. I called it, “my big bag of cancer.”  Eventually, I stopped using the bag but continued to use the binder, which was extremely helpful in keeping my treatment organized and making some kind of sense. It was actually a very handy reference guide to take with me to my appointments.

I looked at the bag and considered getting rid of it. I have a ridiculous number of tote bags due my past as an academic researcher. I did a lot of conference travel and typically, the conference catalog and registration materials are put in a tote bag. Some of them are very nice, very sturdy, and have, as a result, never worn out. Clearly, I did not need my cancer bag in order to lug stuff around. Honestly, I don’t need most of them. They just sit around, “just in case” I need them in the future.

However, one of the first thoughts to come to mind when I saw it was a visual memory of my wonderful breast surgeon, Dr. Beatty, carrying a tote bag just like mine, holding the things he needed for that day. He was the first of my many physicians with whom I developed a doctor-patient relationship. He and his staff were wonderful. I felt so taken care of when I went to his office.

The image of being held, not as an embrace, but as being supported and cared for came to mind. I decided that “my big bag of cancer” is a holder of good things. For now, I am keeping it. Next year, who knows?

I am amazed at the significance that objects have taken on through their association with my cancer treatment. Some of the associations are comforting. Some of them are painful. All of them are part of the truth of my experience, an experience that continues to evolve over time. Experience changes; at times, it changes a lot. But the past, the future, and the present all hold their truths and are all part of me. In my mind, this is the string that holds my life together and gives me great comfort.

 

During my two years of intensive cancer treatment and reconstruction, I cut some corners in my life.  During this time, I had eight surgeries and, at least, three medical appointments per week.  I also worked in time to deal with what was happening to me. There was also the rest of my life, working, mothering, making healthy lifestyle changes, being a wife, and finding time to take a break from it all.

It is only natural that some things did not get done. In some cases, I learned that whatever I’d taken the time to do before really wasn’t that crucial to begin with. With mindfulness meditation, I found myself taking up less time worrying and not having to take extra time recuperating from worrying. If you haven’t noticed, worry is exhausting.

But there were other corners that I didn’t want to keep cutting because doing so created overwhelming consequences like an overgrown flower garden full of weeds. Slowly, the front and back yard have gotten back into shape. I initially got help from friends and neighbors. Later, I just ended up hiring help a couple of times a year. Recently, I found out that I could get my yards maintained for a surprisingly reasonable price from a local landscaping/gardening business. So I am doing that.

The biggest mess, however, was my home office. This is where I store my patient files. To protect patient privacy, the door is always kept shut with a finger-tip sensor lock. After 15 years of private practice, I had never gone through my files to see what ones could be legally disposed of. I had also not set up my filing system with a future in mind that included storing several hundred healthcare records. They were just all arranged alphabetically and some were just shoved into boxes because I had run out of filing space. When I mean “some” I mean about three years’ worth of files were shoved into letter sized cardboard file boxes. Most of my records are kept electronically. The electronic portions of my records are organized very well. This is because electronic records do not have to be physically moved around to make space for new records. Consequently, it was easy for me to respond to requests for copies of reports or progress notes that I had written. In other words, the impact of my out of control home office was not detrimental to patient care.

However, it was detrimental to me because I knew that I could not sustain this way of doing things. It was just getting worse and worse. I stopped using my office as a work space. It was too stressful to be in there. Since I wasn’t using it as a work space, it quickly became a surplus storage place. Two weeks ago, it was difficult to walk around in that office.

I found aLast week was spring break for my daughter’s school. I decided to take the week off to take on my office. I had also seen it as a time to hit a “reset button” as the previous weeks had been particularly stressful. As it turned out, the job was bigger than I anticipated. It was also mind numbingly boring. But I now have an organized work space, files organized with the future in mind, and a whole lot less stuff that I didn’t need. I also got over my resistence to transitioning to fully electronic files. Some friends had ideas that got around some of the problems I had not discovered solutions to and having spent a whole week dealing with paper and cleaning has increased my motivation considerably.

I had a hard and boring week. Nonethless, I woke up this morning, with the full feeling of the “reset button” having been pushed.

This won’t last forever.

It won’t be the last time that I need to re-set.

Nonetheless, it feels extremely satisfying.

I’ve been trying to do a lovingkindness meditation each day of March. I have done one most days. I did one of them while I was taking one of my neighborhood walks. It is true that the meditation is designed as a sitting meditation but I was curious and decided to play the 30 minute-long meditation during a walk. It was actually quite a nice experience. The birds seemed to be singing more loudly and sweetly. The air had the scent of flowers.

As is typical of all mindfulness meditations, I was instructed to examine my current experience. It was suggested that I might be feeling physical or emotional pain. The instruction was to pay attention to the uncomfortable aspects of my life but also, “to see if there is something else.”

“Something else.” There is always something else. The suggestion in the meditation struck me as one of the most powerful aspects of mindfulness meditation, which is the consideration of the “something else” in addition to what is weighing heavily on the mind, body, or emotions.

There are those of us with a cancer experience who wince at words such as, “Cancer is a gift.” That statement omits the “something else”. The something else is life changing and painful in a way that merely writing the words, “life changing and painful” seem to discount the way that cancer changes everything.

For me, however, there is  another side. There is the side of not everything about my life as a cancer patient is awful. Not everything I made of my cancer experience was awful. Although I think about my breast cancer every day, it does not encompass my life.

My life is full of the “something else” in addition to the pain, discomfort, and loss in my life. My life is full of the “something else” in addition to the joy and emotional health I experience.

Life is full. I have long known this. It does seem that a gift of mindfulness is the opportunity to experience more of the “something else” and to get more aware of and engaged in the expansiveness of life, while not getting lost in it.

Today, the “something else” was experienced with by me with my camera. The small gems of beauty mean so much.

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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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