Archives for posts with tag: SCAD

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.

 

 

 

 

You may have heard that the west coast of the U.S. is filled with smoke from summer wildfires. We’ve been in the latest cloud for a few days. As I watched the ash land on my car yesterday, I was reminded of the last time I saw ash in the sky.

It was last October. I was at Spirit Rock Meditation Center for a five night meditation retreat. To the north, there were fires in California, ravaging forests and homes. I was at the meditation center without my cell phone. I had given it up on the first day of the retreat so I could have the retreat experience I wanted. I had, however, told my husband that if any time while I was there, he feared for my safety, he merely needed to call and tell them there was an emergency and I would return home. That never happened. The retreat staff did a masterful job of informing us, just enough, of our safety and the progress of the fires. I was assured that they would not put us in harm’s way.

I had gone to the retreat to be alone with myself, five months after the unexpected calamity of two heart attacks caused by Spontaneous Coronary Artery Dissection, a poorly understood cause of heart attack among primarily seemingly healthy women.

I meditated. I ate. I walked. I slept. I watched the ashes fall on the days of smoke. Sometimes I felt restless. Sometimes I felt bored. Sometimes I felt awkward. Mostly I felt that I was exactly where I wanted and needed to be. I had moments of lovingkindness, peace, equanimity, and mindfulness.

We have ashes falling again. They fall from the sky and settle. The air is hot and acrid. There have been health warnings to avoid vacuuming carpets inside to prevent the ashes that have settled into the fibers from roiling back into the air.

There has been a roil of ashes in my life. Natural calamity. My father died. This happens, especially after a life of 85 years. It is natural but it is calamitous. Normal doesn’t mean good. It means, common. Death is a normal part of life that is really really hard.

Some of the ashes are settling. As I watch them, I am reminded of the mindfulness analogy of the snow globe. If you stop shaking a snow globe, the roil of snow settles. The scene is peaceful but the snow is there.

I can’t help the ashes that fall from the heavens and follow the winds, but I can keep my vacuum tucked away in the closet, at least for now. For me, this means, continuing to protect my emotional and physical energy. I am careful about how much socializing that I do. It takes a lot of energy right now. I do a lot of art. I continue to keep my patient load on the lower side. I ask for help and understanding. I keep in touch with my mom every couple of days. I am taking short vacations.

I am doing my best to let enough ashes settle so that I can see where I am.

Peace friends.

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.

I have spent the last two days at the famous Mayo Clinic in Rochester, Minnesota. To make a long story short, they live up to the hype. They are consistently ranked #1 in hospitals/outpatient clinics. If you live nearby or as in my case, a ways away, and have need of their services, do not hesitate. Don’t let the cold winters scare you off, either.  The entire town has a network of underground walkways that will take you from one building to another. It’s kind of amazing.

I’ve been staying in a hotel that is across the street from the Gonda Building, Mayo’s Cardiology Building. The hotels are incorporated with the clinic buildings, which span several city blocks in all directions. In other words, I have been surrounded by sick people. Even in the clinic buildings, it can be hard to tell who is sick. Frankly, I expected to see a lot more wheel chairs, more people with walkers, and more people on oxygen. I saw these things, but really, not very frequently.

A concept in the game of Poker is “the tell”. A “tell” is a facial expression, mannerism, etc., that provides information to other players. I saw a lot of people at the Mayo Clinic who did not look sick. There was, however, a “tell”. The tell was the gauze wrapped around the crook of the arm. That gauze was put there after blood draws as well as after the removal of an I.V. port.

I was frequently surprised by the wearer of the gauze. They didn’t look “sick”. I don’t look sick, either, nor do I act sick. I learned at this visit that my heart attacks were caused by Spontaneous Coronary Artery Dissection (SCAD), a condition that causes coronary arteries to twist. They aren’t supposed to look like old style phone cords. Twisted arteries can dissect, which means that they can tear. Then blood can escape from the inner layer of the artery into one of the surrounding layers. Blood can pool and cause blockage. That can cause a heart attack even in someone like me, who has never smoked and has normal blood pressure, glucose, cholesterol, etc. To most, even cardiologists, I look healthy, well except for the HEART ATTACKS! Mayo Clinic has been doing research on SCAD since 2010, now. Prior to that time, they saw 10 cases a YEAR. Now they see 10 a month. This means that I was able to see a cardiologist who has reviewed records for hundreds of SCAD patients. She knew what the “tells” are for this particular condition.

There is so much we don’t know about each other as a casual observer or even as an astute observer, who just has no frame of reference.

This seems like a life lesson to me.

Peace friends,

Elizabeth

 The Mayo Building

 

The Gonda Building  It is connected to the Mayo Building. Cardiology is in the Gonda Building. This was a familiar scene from my visit.

Hey, these are Chihuly! A little art from home.

L

This is the line-up for blood draws at the Conrad Hilton Building. It was like the DMV except faster and friendlier, even accounting for the needle stick.

Dan Abraham Healthy Living Center. The Healthy Living Program resides here and is open to everyone. There are programs for employees, patients, and drop-in services. They have a full service spa, which I very much enjoyed. I was lucking that the only openings they had for the week, fit into my schedule.

Following a devastating tornado, Dr. William Mayo was approached by Mother Alfred Moses, founder of the Sisters of St. Francis, with a proposal to build and staff a hospital. This was 1883.

I told you that the blood draw area was like the DMV.

 

The piano is located in the atrium of the Gonda Building. It was donated for anyone to use for up to 30 minutes with guidelines to play “something soothing”. The woman in the first photo was singing opera. She was approached by two Mayo physicians. If my eaves-dropping skills are intact, they were happy to see her because she is a physician they trained in the past. The woman in the second photo was singing Billy Joel and I later saw her performing at the Rochester street fair.


This charming historical building appears to be the original Mayo Medical School. It is now a student center.

I’m coming out of a dip in my mood that started yesterday. I’ve felt disappointed and ripped off. My husband is working a lot of hours right now, which is wearing on me. I miss him and honestly, overwork puts his brain in a different place. I remind myself that the reason I miss him is because he is so wonderful.

I also came to the realization that it is perhaps not a good idea for me to travel to rural areas, far from good hospitals, given that it hasn’t even been a month since my last heart attack. The week long do-it-yourself meditation retreat I was going to do on my own has now been cancelled. I just cancelled a weekend away that was coming up in about a week. This morning, I realized that the camping trip I was excited about going on next month, is a bad idea. This is not the time to be up in the mountains, gazing at the Milky Way, with no cell phone coverage.

I am, however, gaining in other ways. I made an appointment for a second opinion assessment and treatment review at the Mayo Clinic’s main campus in Minnesota. I am going there during what was to be my retreat week. I am getting pressure from people to take my husband with me. This was supposed to be my retreat week! I want to be by myself. I am just getting a bunch of scans done and talking to a cardiologist. I may change my mind but I am adamant that it is my decision to make. Take that, world!!!

I also had a follow-up appointment with my local cardiologist today. We had a nice chat. I got to keep my clothes on and everything. He was excited when I told him that I was going to the Mayo Clinic. I took that as a very good sign. Also, when I told him about the SCAD Alliance website, he immediately pulled up the site on his computer and started reading it. We reviewed my scans and he explained everything very well. He seems very bright and enthusiastic about his profession. He told me that SCAD was the likeliest cause of my heart attacks. The other possibilities are heart disease and spasm-ing of an artery.

Now that I’ve written about this, I am feeling a bit more upbeat.

I will keep you posted, friends.

Heart Sisters

For women living with heart disease

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).

KomenWatch

Keeping our eyes and ears open.....

Life in a Wheelchair

You never think it could happen to you!

4 Times and Counting

Confessions Of A 4 Time Breast Cancer Survivor

After Twenty Years Cancer Research Blog

Exploring progress in cancer research from the patient perspective.

My Eyes Are Up Here

My life is not just about my chest, despite rumblings to the contrary.

Woman in the Hat

Survived Cancer - Flunked Survival Charm School

Dglassme's Blog

Wouldn't Wish This On My Worst Enemy

SeasonedSistah2

Today is Better Than Yesterday

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

The Pink Underbelly

A day in the life of a sassy Texas girl dealing with breast cancer and its messy aftermath

The Asymmetry of Matter

Qui vivra verra.

Fab 4th and 5th Grade

Teaching readers, writers, and thinkers

Journeying Beyond Breast Cancer

making sense of the breast cancer experience together

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

Entering a World of Pink

a male breast cancer blog

Luminous Blue

a mother's and daughter's journey with transformation, cancer, death and LOVE

Fierce is the New Pink

Run to the Bear!

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer