Archives for posts with tag: Breast Cancer

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.)

 

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

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

 

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.

 

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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.

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.

 

 

 

 

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.

Several years ago, I was back east. My dear friend, Cheryl’s, mother had died after a long illness, early-onset Alzheimer’s. Cheryl had been her mother, Daisy’s primary caregiver since she was a 25-year-old psychology intern. Fortunately, Cheryl lives in her childhood home in a wonderful neighborhood. When I visit her, neighbor’s come over to greet me because they know that I am one of Cheryl’s people. Nonetheless, it was incredibly difficult for her, a single woman finishing up graduate school and starting her career, to care for her mom. Cheryl has her own health challenges, which are exacerbated by stress, and required multiple surgeries during her mom’s life. After several years, Daisy entered a nursing home.  As her life neared its end, her best friend, Shirley, a retired nurse told Cheryl that her mom’s time was coming to a close. It is so hard to know exactly when someone is going to die and even harder to let someone go. Daisy had been a single parent to Cheryl and they were very close. She died before a priest could come out to perform last rites, Anointing of the Sick. The parish priest did come afterwards and performed the final Roman Catholic sacrament.

I arrived a few days later. A group of neighbors set up a repast of Trinidadian food that had been brought by caterers (Cheryl’s parents were both from Trinidad) while the rest of us attended the funeral. The officiant had been Daisy and Cheryl’s parish priest many years before and was now a cardinal and a family friend. The service was beautiful. One of Cheryl’s friends, a neighbor, sang. The cardinal also sang parts of the mass and he had a very nice voice. After mass was ended, we went to Cheryl and Daisy’s home for the repast and celebrated Daisy’s life.

I stayed on for a few days. I went to mass at Cheryl’s parish. The priest who had performed Daisy’s last rites presided over mass. The theme of his homily was “what are you waiting for?” To my horror, he used the story of being called to perform last rights on Daisy after she’d died. He went on and on. I left church humiliated and livid on behalf of my dear friend who had been nothing but a wonderful daughter not to mention the fact that he knew that she was not only a member of his parish, but one who had just lost her mother to a truly horrible disease. Both Cheryl and this priest had a story about what had transpired. They were very different stories. It is easy to call one of them right and one of them wrong. I know which one I would call wrong!

I have not written any entries in this blog for nearly a month. I have used the month thinking about the stories we tell that provide meaning to us in explaining our life experiences. Breast cancer survivors tell lots of meaningful stories. So do heart attack survivors, by the way. Not surprisingly, they are some of the very same stories about “kicking illnesses ass”, about “being given a second lease on life”, and even the perception of illness as a “gift”.  There are also the stories of “My life will never be the same” and “What’s going on? This is horrible!”. There are also national heart awareness days, including the recent “Wear Red Day” to raise awareness of cardiac disease in women, the number one cause of women.

I have been living in a particular breast cancer blogging community for nearly six years now. I find that I bristle at some of the narratives told by heart attack survivors. I have also not delved deeply into the cyber community for SCAD survivors. There is a lot of raw terror in that community. It makes sense. Most of the women are young, had a heart attack out of the blue, and they have cardiologists who don’t understand their condition. Those are the women who have a narrative of chaos and literal heartbreak. I don’t bristle at their stories. I just feel very sad for their suffering. It’s the catch phrases used by the women who by all appearances seem to be coping well. They are the ones who are more likely to use the phrases that are so controversial in the breast cancer world.

Yesterday, I thought back to perspectives of my friend and the priest around Daisy’s death. The priest’s actions were clearly “wrong” in that they were unskilled and did not demonstrate compassion for others. The stories they told were very different. I do think that Cheryl and the priest shared something very important. They were both dealing with suffering. How was the priest suffering, you ask? Admittedly, I don’t know his mind but I have some guesses, based on his job. Priests are on-call constantly. And they are on-call for decades. Not everyone is up to that every minute. I can see someone getting wrapped up in the stress of this and having a fit about an inconvenience. This does not excuse his behavior but it offers a possible explanation.

The stories we tell may either help or amplify our suffering. The helpful story I tell myself may be one that would cause suffering to someone else in a similar situation. This is why the “cancer is a gift” narrative doesn’t bother me the way it does some others. I can see that it may help some people. As long as people don’t explicitly tell me how I should view my own life experience, I am fine with it. What I have been struggling with is the backlash against these narratives. It is one thing to say, for example, “Cancer was not a gift for me” and quite another thing to say, “Cancer is a gift to no one.”  To me, that causes the same problem as the one that is trying to be solved, that is, prescriptive language that defines experience.

But really, what does it matter to me? And who am I to invalidate anyone’s personal characterization of illness, just based on the ideas? If you want to tell me that “cancer’s a gift”, that’s fine as long as you are not my husband or another close loved one. If you want to tell me “cancer’s never a gift.” That’s also fine. If you don’t like the word, “journey” or any other phrase or word that is currently popular, that’s fine. I define my own experience. And the narrative that I am putting together is dynamic and at times, very messy. I respect myself. I respect you.

As always, I wish you peace, joy, and to be free from suffering.

Five years ago, I was diagnosed with breast cancer and after two lumpectomies, had a right side mastectomy. The right side of my body was plotting against me.

A few months ago, I had two heart attacks, spaced eight days apart. The left side of my body was plotting against me.

We my sides battling? What side was I on?

Both sides of my body are me. Diseases have threatened the integrity, the wholeness of my body. Body systems need to work together reasonably well in order to sustain life.

Integrity is not a battle. Battles don’t produce wholeness, healing does.

I can’t fight against myself, well I could, but I don’t want to. I want to live with the reality of myself. I will not take sides.

Yesterday in Charlottesville, VA, there was a terrorist attack on peaceful protestors, carried out by a young man who had joined the march for white supremacy. There were others who terrorized with hate speech.

This event was not born without historical or cultural context. There are excellent writings about this and one point that is made over and over is that given our history and our current culture, we must be vigilant. There are also many condemning the white supremacists and making statements that put them on another side,  noting that they came from out of town, they are not representative of Americans as a whole, and “this is not us.”

Humans, like other animals, have dominance hierarchies. Aggression is part of our make-up. It is a spark in each of us. For some of us, it is a small fire, and for others still, an inferno.

In my mindfulness practice, which waxes and wanes, by the way, I have found that through self-observation, I have found more acceptance. And in accepting more, I find it easier to change, to get past the guilt, shame, confusion, and denial that make me battle with myself.

We are connected by our humanity. I cannot deny that I do not share something important with people who identify as white supremacists. I believe that all are worthy of respect, respect for the intrinsic value of each person. What people do, that’s different. Respecting or condoning actions is different. It boils down to what I tell kids, “There are no bad kids. I have never met one. But what you do, can be okay or not okay.”

The acceptance of oneself, each of us with all of our flaws, allows us to remain part of humanity rather than running off in shame. It allows us to look closely at ourselves and make steps toward healing.

Our country has never worked perfectly but right now, all of the diseased parts are inflamed. It is time for self-examination and action.

We have a painful road ahead; let’s take the most healing path that we can. There are many things that I am against. I am against hateful ideology. I am against aggression. But I am also on the side of humanity.

Peace friends,

Elizabeth

 

It started when I was born. I was early and not quite baked. I was born with Infant Respiratory Distress Syndrome,  which was known as Hyaline Membrane Disease at the time. My lungs did not work properly. Back then, they didn’t know how to treat it because they didn’t understand the cause. But I made it. Yes, I have residual respiratory issues, but they have been minimal.

In 2012, I was diagnosed with breast cancer. We were back to the thorax, the trouble-maker.  I didn’t really make the connection, at the time, about this coincidence of location.

Five years later, exactly three months ago, I had a heart attack! Eight days later, I had another.

There’s a colloquial rule of thumb in research. Two data points can suggest a trend. Three can reveal a pattern.

Well, I’ve had four thoracic events. “Thorax” is a funny word. However, it is a very important part of the body and when it’s dysfunctional, it’s not cute or funny, at all. Like Dr. Suess’ Lorax, my thorax has a funny name but an important message, “I am the thorax, I speak for disease!”

Horrible word play, I know. I may or may not have, contrived a way to work it into this post. It’s hard to say. What I will say is that my thorax has been an intermittent trouble-maker. I will also say that I started this blog with a word-play filled title, with a serious theme of identity. “My eyes are up here.” My disease is not the sum of my life. My diseases are not the sum of my life.

I’ve been blogging for five years now. I blog about my life. I blogged a lot about breast cancer. As I blogged less about breast cancer, I was fine with that. When SCAD entered into my life, I had a brief concern that my diseases were competing for limelight in my blog. What is this blog?

My heart is pumping. My lungs expand and contract as I breathe. I have surgical scars but no known cancer. Thorax, you don’t speak for disease. You speak for life, my life, with all of its parts.

My eyes are still up here.

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.

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