Archives for posts with tag: Breast Cancer

Diane, in Real Life

October 5, 2019 //

Diane and I met over seven years ago. We went through breast cancer treatment at about the same time and we both blogged about it. We’ve stayed in touch through social media. Yesterday, we met face-to-face, for the first time.

That’s the short version of the story. The larger truth is that Diane and I joined a group of breast cancer bloggers who provided and continue to provide much needed connection, understanding, thoughtfulness, compassion, joy, and humor during the most vivid technicolor aspects of our lives from the traumatic, the ridiculous, the ecstatic, the sublime, and all of the places in between.

Some of us from that original group are still connected either through continued blogging or interaction on social media. Some of us have died in the past seven years from metastatic (stage IV) cancer. Others have left social media for reasons, perhaps, related to the progression of disease. Quite a few of us don’t blog anymore or like myself, write much less frequently, and when I do write, it is usually no longer about breast cancer.

Diane lives in Florida now. She traveled to Seattle to pick up a new Golden Retriever puppy, who she has named, Yukon. Those of you who know Diane, know about what her dogs mean to her, how much she loves them and her talents in training them to be prize winning bird dogs. As of this writing, Diane is still traveling around the area before she picks up Yukon.

Diane and I both love the outdoors, so last Wednesday, the day of our meeting, was spent hiking in Mt. Rainier National Park. We had great conversations during the four hour round trip of driving, as well as during the hike itself. Diane is a skilled photographer. This is something I knew about her. What I didn’t know is that she has studied visual arts pretty seriously. I learned a lot from her on the hike. She shared her knowledge of composition and photographic technique. Diane loves to take photos, as do I. It was so wonderful to share our love of photography as well as our love of nature.

Diane and I had a daylong conversation with easy-back-and-forth. Speaking for myself, I felt not even one moment of awkwardness. We had a wonderful time. I’ve long admired Diane’s tenacity, humor, generosity, no nonsense honesty, and intelligence. I admire her even more now that I’ve learned more about her and had the privilege of sharing a day in the mountains on a truly glorious fall day.

There is something really special about these cyber relationships. We’ve had years of supporting each other and cheering on each other’s health and happiness. I am really happy to have Diane as a friend as well as to have the love and support of this community.

Tags Breast Cancer, Friendship, Mt. Fremont Lookout Trail, Mt. Rainier National Park

Categories Uncategorized

Read at your own risk

July 13, 2019 //

People, I’m going to get nerdy. I’m going to talk about a subject that strikes doom into many people’s heart. I am not joking even though I am using strong language.

I am going to talk about risk factors and what they mean from a research perspective.

When the media talks about “what causes/prevents cancer” or “what causes/prevents heart attack” or any other bad disease, they are usually referring to risk and protective factors. Example number 1. We know that smoking “causes” lung cancer. What that really means is that smoking is risk factor for lung cancer. We all know people who smoked throughout their lives and never got lung cancer. And some of us know people who got lung cancer who were never smokers.

So from a research perspective, smoking does not cause cancer. Smoking is a causal factor for lung cancer. It increases the risk of developing lung cancer by quite a bit.

“Elizabeth, that means that I can smoke, not feel guilty about it, and because George Burns smoked cigars all those years and lived to 100 years-old, I won’t get lung cancer?”

No, it means none of that. George Burns beat the odds. I mean literally just that. One, he lived much longer than average. Two, he lived much longer than average given that he was a smoker. No one reasonable ever said that there is a 100% chance of getting lung cancer if you smoke or that there is a 0% chance of getting cancer if you never use tobacco products in any way.

Okay, I promised to get nerdy but I am taking it back. Let me put this plainly. You can engage in activities or behaviors that are risk factors and end up with none of the risky outcomes. Risk is relative, not absolute. You can engage in activities or behaviors that are protective factors, you can be a teetotaler, never smoke, exercise regularly, eat well, be nice to your mother, and still end up with scary diseases. Those behaviors only reduce risk they do not eliminate any risk of disease.

And come to think of it, no matter what we do, some day, we will end up dying.

Does that mean that what you do today, tomorrow, or the next day doesn’t matter?

Thanks for understanding my need to be a a psychologist nerd. Yes, we are all about the thoughts, feelings, and behaviors but as Ph.D.’s, we are additionally, all about the research. Also, guilt is when you regret doing something that is in conflict with your beliefs and values. Sometimes I wonder when we talk about feeling “responsible” for our diseases that we are really talking about shame rather than guilt. Guilt actually can be productive and helpful. I didn’t believe that for most of my life until I understood the difference between guilt and shame. Guilt refers to behaviors that we can chose to change. Shame is the feeling, “I am bad.” That’s a lot different than guilt, “Wow, I wish I hadn’t done that.” Sometimes I do things that are at odds with my beliefs and values. I don’t think that I am alone in this. I try to treat myself with compassion. I am not always successful. I try to be compassionate and patient with myself for not living a perfect life. I am not always successful.

My proposal to myself and with all kindness, to you is, “How do you want to live your life today?”

Much love and peace to all of you,

Elizabeth

Tags Breast Cancer, death, guilt, heart attack, mindfulness, risk and protective factors, SCAD, self-compassion, shame

Categories Uncategorized

The Sliver

June 26, 2019 //

Lately, I am finding it easy to tip my toe into waters of despair. There have always been heartbreaking world problems but in this country, there are heartbreaking problems being purposefully created. Purposeful assault against vulnerable people and against our fragile Mother Earth. Oh yes, there is also the continued assault against our republic. The first anniversary of my dad’s death is coming up on July 5th. I have been feeling that, along with other personal losses, my scary past illnesses, parenting worries, for the last month.

Even for a mostly extremely lucky person like me, life is hard. Fortunately, I am able to take my toe out of the water of despair. Then I see a sliver of hope. It is a sliver but it is there. It is meaningful. It is an opportunity, fragile as it is. I would like to be more hopeful but I’m not.

Most of the day and most days, I feel energetic and happy. And then I feel the restlessness of wanting to get away. The sadness doesn’t last long, sometimes 30 seconds, other times, an hour or so. When I feel despair, it is perhaps for a few seconds. However, the restlessness stays with me. It makes it hard to do seated meditation. It makes it hard to write, which is why it has been so long since I have posted.

What I find easy, these days, is to hike. The forest is lush and green. The mountains are abundant with wildflowers. My body is gaining strength to handle steepness that I was not able to do when I was younger. Steepness gives way to vistas of nearly unimaginable beauty. The promise of a hike is enough to motivate me to put in long days of work and to get my chores done at home. I am able to free up time and space to get away.

And it’s not that I don’t think of the big problems when I am hiking because I do. But I do it while also being surrounded by a larger context of beauty and nature’s reminder of the vastness of time, space, and the ongoing life cycle. These things are bigger than me. They are bigger than our species. My mindfulness teacher talks about “residing in a larger container of awareness”. She is talking about something I don’t yet fully understand but I think I am getting gaining understanding.

I am grateful for the life circumstances that allow me to protect my hope and to protect my love of life and being. This hope motivates positive action. Thinking about problems is not the same as constructive action. It is merely grieving in place. I am learning and re-learning that I can grieve and move at the same time.

Peace to you, friends.

Tags awareness, Breast Cancer, grief, hope, mindfulness, Nature, SCAD, Washington state hiking, wildflowers

Categories Uncategorized

It’s all about the pace

May 9, 2019 //

The first time that I learned the importance of pacing, I was pregnant. The fatigue was really challenging. I was keenly aware of myself as a limited resource. I prioritized. I still ended up doing a lot but it was stressful and work was unsatisfying in many ways. Then I became a mother and it all became too much for me. I became clinically depressed, got treatment, and took a good look at my life. I was no longer depressed and with time, my energy increased and I was able to do more work than I had previously.

In 2012, my daughter was a teen and did not need my constant attention. I was working a lot at my private practice. I worked hours that I thought I “should” even though I was working more than full time hours during most weeks. I was working at a hard pace and if I am completely honest with myself, enjoying making decent money for the first time in my life.

Later in that year, I was diagnosed with breast cancer. I learned how quickly daily work schedules can be changed when they have to be. It was incredibly hard. Two years later, when I was done, I was still wiped out, though slowly regaining energy, not to full strength, but to a higher level than before. I have not returned to full-time work since that time. I work about 80% of full time to allow for self-care.

Lately, I have been literally pacing myself. I am in training for a big hike. I am not naming it because it is a kind of hike and not really a specific hike. I want to increase my ability to hike uphill. I really enjoy hiking but I have avoided certain hikes for decades because I had trouble with elevation gain either due to injury or lack of fitness. I also had a fancy cardio test a few months ago and learned that although my aerobic capacity is better than average, my anaerobic capacity is less than average. I start building up lactic acid earlier than most. I wonder if this has always been true. It may explain why as a kid who was athletic, I hated running long distance and sports like soccer, which seemed like non-stop running. I am from Seattle and as you may have noticed, it is surrounded by mountains. There are a lot of steep hikes.

I am hiking a lot, gradually increasing the elevation of the hikes. I take photos, an activity I love to do, which also provides little breaks along the way. I am learning to hike at my own pace instead of trying to match the pace of others. Uphill, I am slow, but steady.

The frequency of the hiking is higher than before. I am going out 1-2 times a week to hiking areas. Sometimes I hike alone and other times I don’t. I am enjoying it immensely.

I do notice that it is a big difference in my level of outdoor activity. It reminded me of the second summer after my cancer diagnosis. I spent the first summer in surgeries, one after another, three total until the margins were finally clear with a right side mastectomy. At the end of the summer, I started one of many reconstructive surgeries. I had lost a summer of outdoor opportunities living in a place that has some of the nicest summers you will ever experience. By the next summer, I was bound and determined to live outdoors as much as I could, considering that I was still in treatment. We had a ball.

Two years ago, I was recovering from a SCAD induced heart attack and traveling to the Mayo Clinic. Last year, we were caring for my dad, who died in July.

At this moment, I am healthy and energetic, thanks to luck, exercise, healthy eating, yoga, and meditation. I am enjoying what I am able to do with this body of mine, which has been through a lot, and will be through more. At this point, this pace is right for me.

April was wet but beautiful.

May has been filled with splendid views and wildflowers!

Tags Breast Cancer, exercise, hiking, Pacific Northwest, SCAD, self care

Categories Uncategorized

No Parking West of Here

March 30, 2019 //

Our dear friends, Robin and Nate, were visiting from North Carolina recently. They asked a question about a parking sign they’d seen in Seattle, Robin had even taking a photo of it, “No Parking West of Here”. “We saw this weird parking sign. How do we know what direction is west?”

I thought immediately, “What’s weird about that sign? West is the direction of the Puget Sound and the Olympic Mountains. Lake Washington and the Cascade Mountains are to the east.”

My second thought was, “Oh yeah. I live here I know the landmarks.”

A life with without major landmarks is confusing. Disorientation is exhausting.

I am at a point in my life when I am establishing new landmarks. Actually, that’s not accurate. I am at a point of my life when I am mindful of the fact that I am in a perpetual state of landmark establishment.

I still think, every day, about the fact that I was diagnosed with breast cancer nearly 8 years ago.

I still think, every day, about the fact that I had my first heart attack (the second, 8 days later), nearly 2 years ago.

Despite this daily mindfulness, these landmarks have changed in my life.

I have been working hard on my mental and physical stamina. I am working hard to have a positive influence on my health. I meditate regularly. I do yoga twice a week now. I have increased my exercise and a couple of months ago, I tracked my 500th meal.

I am feeling healthier and more fit. I have had fitness testing and my cardiovascular health has improved a good deal in last last year or so.

Despite all of this, I am still considered, “obese” with my current body fat percentage, which was calculated in fancy ways. I actually think I look good. But that’s not what it is about, is it? I thought I looked good 25 pounds ago. I started working on my fitness so that I can do more of the things that I want to do and to reduce my body fat, because it raises my risk for disease.

I have used “looking good” as a landmark for so long. For so long, I didn’t think I looked good. For decades. Bit by by, I developed a better body image.

Looking good is not the same as health. I have improved my health in a great many ways. I can accept it if my current fitness doesn’t improve. I will work to see if I can improve it. I will hike, do yoga, and meditate.

I will do my best to enjoy the process, which does not require, at any time, looking in the mirror.

I will do my best to focus on what I can do right now.

Here are some photos from what I was able to do last week, hiking with John and our friends, who happen to be relatives, near Bend, OR. (Note: I appear in none of the photos because I was the photographer.)

Tags Breast Cancer, Family, health, hiking, SCAD Alliance

Categories Uncategorized

Cold

December 30, 2018 //

I’m cold. I mean that literally. It is winter and I am cold.

Obvious, huh?

Not so obvious, actually. Through the miracle of insta-menopause, which was part of my cancer treatment, I was hot for a long time. I would find myself stripping down to a sports bra in February during an outdoor walk. I stopped wearing tights with my dresses and went bare-legged through many winters.

Last year, I started wearing footless leggings under my dresses. This year, I notice that my workout clothes are not warm enough. I also noticed that I have a shortage of long-sleeved dresses.

I am longing for the two sweater dresses that I gave away to charity a few years ago because I could never wear them. I always overheated.

Yes, my friends, my body continues to heal from the effects of cancer treatment and the natural hormonal changes that come with middle age. My personal thermostat is much more like it was before the years leading up to cancer when I was in peri-menopause.

Sensation continues to return to my torso, the areas of my surgeries. Although not fully restored, I no longer feel numbness when I am upright. It is odd how a lack of sensation feels very much like something, like carrying around a weight.

After nearly 7 years of survivorship, I am still healing. Perhaps, if I knew this would be the case back in 2012, I would be fearful. But today I find this to be a gentle miracle, an aging body that is better able to sense cold, pressure, and gravity.

May 2019 bring you peace and healing, dear friends.

-Elizabeth

Tags Breast Cancer, healing, Lupron, Menopause, Tamoxifen, TRAM breast reconstruction

Categories Breast cancer, Uncategorized

Endings

November 9, 2018 //

I finished an 8-week-long Mindfulness-Based Stress Reduction (MBSR) class last Wednesday. I am not new to MBSR but wanted to increase my formal mindfulness practice since it had waned over the past year, with my dad’s cascade of health problems and death last July.

It was a wonderful class. I haven’t been writing much. As my meditation practice has gotten deeper, I have longer times when I am experiencing sensation more than language. This is something I knew could happen in meditation, but as a person who typically has a running monologue in my brain, it is a rather magical and new experience. It is not, however, easy to write about.

I feel some loss about the class ending. To prevent my being totally adrift, I have also started seeing a mindfulness psychologist, Bonnie, who specializes in working with cancer patients. I had actually sought her out first, her practice was full, and she recommended the class. In the mean time, space opened up and I have been seeing her. She also happens to be a friend of my dear friend, Nancy. This is not surprising since 1) Nancy seems to know almost every other psychologist in Seattle and 2) Nancy also works with cancer patients as well as being a breast cancer survivor herself. (Nancy, you may remember, is the dear friend who cleared her schedule to be with John and I for my first breast cancer appointment, back in 2012.

I feel pretty fortunate to work with Bonnie. She is very skilled and worked for many years as a researcher at the Fred Hutchinson Cancer Center. Bonnie did mindfulness classes with cancer survivors and the classes were associated with reduced recurrence. This is why I began my mindfulness practice in 2012, by the way, after following some Canadian research on a specific mindfulness class for breast cancer survivors.

But wait, I was intending to write about endings, not beginnings. The other thing that ended was the U.S. Midterm elections. I did a lot to prepare myself for dystopian outcomes and good thing the worst case scenario did not occur because I was not successful in my preparation. They were not horrible, not great, and maybe not even good. Not horrible. That is the current benchmark for success in current U.S. national leadership. Actually, some really great things did happen. Lots of women were elected, especially women of color. Some of the people elected were LGBT/Q. Eight scientists were elected. Two women of color who are also Muslim, were elected.

So the election ended but as I had anticipated, there is still a lot of work that needs to be done. Our republic is very much in peril and so many people are suffering. I am exhausted by the news but I am also mindful of the fact that experiencing exhaustion is one of the best outcomes of our current situation. As I said, many people are suffering from abhorrent treatment and some have died or are dying due to lack of access to basic human needs or violence.

One thing ends. Another thing begins. Sometimes it is tempting to jump from one thing to the next without acknowledging the ending. Today, I feel the endings and the beginnings. I had put myself, intentionally, in a protective shell of self-care practices for the last few months. I come out for periods of time and then retreat to a thinner shell, for a shorter period of time, but it is a shell, nonetheless.

Overall, I am doing well. Most of the time, I feel happy. In the last week or so, I’ve felt not so much a wave of grief, but a persistent lapping at my toes. I have reacted more strongly to situations than normal, for example, feeling shame at times, over minor incidents. It is as if grief takes me back to a much younger time of my life. Bonnie says that the energy I am using to cope with my dad’s death is leaving me with less to cope with the normal daily stresses and that I am going back to older ways. That makes sense to me.

Working on grief is helping me define the edges of the persistent lapping at my toes. It turns out that today, they are not lapping at my toes. I am standing in the middle of the ocean. I feel sad today and a bit angry.

I don’t like to be in the middle of the ocean but I am grateful that I am standing, for now.

Peace to you, friends. I hope you are well.

-Elizabeth

Tags Breast Cancer, grief, Mindfulness-Based Stress Reduction

Categories Uncategorized

Clutter

September 14, 2018 //

I have been trying to declutter my house. Yesterday, I noticed that I still had my “big book of cancer” on the shelf in my bedroom. It’s the 3-ring binder of information I received from my cancer center when I was first diagnosed with breast cancer in 2012.

I used to carry this book around with me to every appointment. As you can see, I added tabs to it to organize all of my medical records by date. Since not all of my providers were at the cancer center, this helped me keep my care coordinated. It also helped me follow my treatment and form good questions.

When I saw it on the shelf recently, I thought, “Get rid of that! Why is that in the bedroom of all places?”

Then I remembered that every pathology report, every surgery report, and my onco/dx testing results are in there, as well as my notes, and research articles.

I will move it out of my bedroom. I no longer have to have it handy. But I may still need it.

Sometimes it is easy to get rid of the clutter of my experience with breast cancer. The harder part, however, is knowing what is clutter and what is not.

Tags Breast Cancer

Categories Uncategorized

My DNA is everywhere

August 30, 2018 //

I did a saliva DNA test for my ancestry through Ancestry.com about a year ago. My husband was a bit surprised, “Now you’re DNA is out there.” I replied, “My DNA is everywhere. It has not been private for a long time.”

In 2012, I was diagnosed with breast cancer. I underwent BRCA 1 and 2 DNA testing. The test results suggested no mutation of either gene. Mutations are associated with increased risk of breast cancer, ovarian cancer, and prostate cancer.

In 2017, I had two heart attacks within 8 days, due to Spontaneous Coronary Artery Dissection (SCAD). I provided a blood sample to the Mayo Clinic, as part of their DNA registry to identify genetic contributions to SCAD. A few months later, I had some more genetic testing done through a local cardiologist. I found that I have a genetic marker for elevated cardiac risk.

In my situation and with my personality, I prefer to gather information, if there’s not physical risk associated with it. But this is not for everyone. This is why there are genetics counselors, to help us make informed decisions about whether testing is the thing to do and to help us understand the results when we do it.

There are two times that I have refused DNA testing and it has been on behalf of other people. The first was when I was pregnant with Zoey. I opted not to have amniocentesis after a blood screen indicated increased risk for Down’s Syndrome. After looking at the testing properties of the screen, talking with a genetics counselor, and meeting with a neonatal specialist, John and I agreed that the risk of Down’s Syndrome was really low (the screen had a really high false positive rate), not high enough to risk miscarriage through the amniocentesis procedure.

When my dad was diagnosed with stage IV prostate cancer in March of this year, there was a referral for genetic testing. Mom and I agreed that this was not top priority at the time. Then my dad got an emailed referral once again about a month before he died. I handled Dad’s email correspondence.

Dad had so many medical appointments. He had dementia. He was fully physically disabled, needing two staff members at the nursing home, to move him. (He would later only need one person and that’s what allowed him to be discharged and die at home, as he wished.)

Genetic testing? Really? Since when is it surprising for an 85 year-old man to have advanced prostate cancer?

However, I don’t know the answers to all questions. I am not an oncologist. I contacted the genetics clinic and asked whether it was really important that Dad have the testing done, given his advanced age and limited quality of life. I was told that the referral had been made “due to family history of certain cancers.”

It was now clear to me that it was my history of breast cancer that led to the referral. I wrote back to the PA, explained that I’d had BRCA 1 and 2 testing, was negative, but that my testing had been done in 2012. I asked if she could tell me the testing protocol so that I could get the testing done instead of my dad. She very kindly forwarded my question to one of the physicians, who told me that she agreed that testing wasn’t a great idea for Dad and suggested that I ask my oncologist for what testing to get done.

I haven’t gotten around to the testing yet. I just sent my oncologist an email, asking for her opinion.

The Information Age puts us in the position of finding the sweet spot between too much and too little.

Tags BRCA 1 and 2, BRCA gene testing, Breast Cancer, Prostate Cancer, SCAD, Spontaneous Coronary Artery Dissection

Categories Uncategorized

Beyond Dos and Don’ts

March 31, 2018 //

There are a lot of “what not to say” to a cancer patient lists. Although I agree with the intent, the lists rub me the wrong way. There’s nothing in them that suggests alternative, supportive behavior, and that’s one of the reasons that many people don’t respond well to people with cancer. Cancer is scary and if saying or doing anything could be on the “don’t list”, responding appropriately although not impossible, is very difficult. There’s also the issue that people are individuals and what may be supportive to one person may not be to another or even to the same person, what might be supportive at one time may not be supportive at another time.

A better version of the list was the “comfort in/dump out” diagram, first published in the LA Times in 2013. The diagram consists of concentric circles in which the person with cancer is in the center, as the person most impacted by the illness. It was a pretty good approach, much better than a “don’t” list though some people took it as license for the person at the center of the diagram to be as nasty as they want to be to everyone in the larger circles while expecting support from all of those people. I don’t blame the author for that because I think it is a misinterpretation of the diagram. An issue I have with it, however, is that for some of us, we are not able to put ourselves in the middle. For example, when I was diagnosed with breast cancer in 2012, I had a 13-year-old daughter. I did very little “dumping out” at her and expected very little “comfort in” from her. I was still the mother of a child, a child who was dealing with her mother having cancer. The parent-child relationship, at this stage, is not reciprocal. Parents give more, kids give less. To flip it around is not good for a child’s development.

My daughter lives away now at college, which has made self-care easier for me. However, my 85-year-old dad has been quite ill with an increasing list of debilitating ailments. He now has more physicians than me and has been hospitalized twice since November. This is the stage of the parent-child relationship when the child needs to step up on giving. I also have five brothers who live locally so they help, too. And my mom takes excellent care of Dad.

I had two heart attacks less than a year ago. I had breast cancer 6 years ago. Sometimes I can be at the center of the circle, sometimes not. Mostly, my dad is at the center, and to be truthful, he does his fair share of “dump out”. But also has times of incredible sweetness and gratitude, which is a support to all of this caregivers. My mom, who is on the receiving end of 99% of the “dump out”, is sometimes impatient, but mostly bordering on sainthood. The grouchiness and displaced anger do wear on her, as does responding to my dad’s frequent calls for help in the middle of the night. We’ve gotten impatient and frustrated with Dad, on occasion. He gets fixed on money, not wanting to spend it, even on things that would make life a lot easier. And then there were all of those years that he refused to get the earlier signs of illness checked out despite getting referrals from his primary care physician to do so. He was clearly at the center of the circle, but he wasn’t making good decisions. There was perhaps some “dump-in” that occurred during this period, which lasted three years as we watched Dad go from a man in his early 80’s who could still hike several miles to shuffling, to barely being able to walk, to barely being able to walk with a walker.

Life is messy. Sometimes we dump out. Sometimes we dump in. Sometimes we just don’t know what to say or do in sad and scary situations. Everyone is at the center of the circle at one time or another. Sometimes the people who say or do “the wrong things” are in the center of a DIFFERENT circle. This is a fluid process. There is no prescription for being a decent person.

In the process of accepting all of this, perhaps we can learn to do better and to be forgiving for the times we fail.

Tags Breast Cancer, caregiving, mindfulness, parents and children

Categories Breast cancer, Mindfulness