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One of the former patients at cardiac rehab was a woman in her early 60’s. She is slim, looking right at home in her fashionable work out clothes. She is also quite fit. I marveled at her strength and endurance on the exercise machines. Her last day of rehab was a week or two ago. We end rehab sessions as a group with hand held weights and stretching. She asked the rehab staff is she could talk to the rest of the group.

She talked about how much the rehab group meant to her. She also said that at the beginning, she needed her husband to help her walk from the couch to the bathroom. It turned out that she was new to exercise and she said that she was in the best shape of her life. Then she can each of us pick an angel card out of a bowl. Each one had a word on it and we were not able to see them until after we’d chosen them.

I looked at my card and it said, “surrender”. That is something that is very hard for me to do. To me, it is giving up. I looked at the word and I have been keeping it in the back of my mind. I know there are lessons for me in it.  Surrender means to submission to an authority or opponent.

In objective terms, my recovery is going well. However, it is still a struggle. My exercise physiologist, Lisa, told us that there are usually far more men than women in cardiac rehab. She also noted that women often drop out of rehab before they finish treatment. She further noted that in her experience, they often cited family responsibilities as a reason that they could no longer participate. Heart attack is THE number 1 killer of women. Yes, it is even higher than breast cancer. Even if Lisa is wrong about this being the main reason that there are fewer women than men in rehab, it is concerning, nonetheless, that women are putting their self-care needs aside in the face of life threatening illness.

It’s concerning, but I get it. Right now I am doing a lot of fighting to protect my time and energy resources. As I’ve mentioned previously, I feel much like my normal self most of the time. The rest of the time, I am pretty tired. Although it’s been a couple of weeks since I’ve had a whole day during which I felt exhausted, I still have to go to bed at 8 pm and if I’ve exerted myself a lot, I might get into bed at 6pm.

Participating in cardiac rehab takes 8-9 hours out of my week, including commuting time. I have reduced my work schedule to 50 to 70% time. My household responsibilities have increased rather than decreased. My daughter is moving to northern Washington for university in two weeks. She is going to be living in an apartment. I have taken charge of making sure she has everything she needs for her place. Starting a household from scratch is a lot of work and not something that most teens know how to do. She has her own move preparations, anyway. So I have been shopping garage sales and thrift shops and being Amazon’s best customer. We loaded up a moving truck and our van over the weekend and moved her things into her new apartment. I did a great job. The only things I didn’t think to bring were batteries, light bulbs, and a fire extinguisher.

I am good with details and taking care of things and people. I enjoyed this to a point. The preparations were a good way for me to process my daughter’s upcoming move out of the house. But I had already thrown a going away party the weekend prior. My brain is tired. I am not getting as much help around the house as I would like or that seems fair. My husband is having a hard time of his own. His work has been terrible, there are some very stressful issues in his extended family, his daughter is moving out, and his wife had two heart attacks last spring. I also suspect that he feels rather ashamed that he has not helped out more. Shame almost never motivates people to do anything healthy. It is one emotion we would perhaps be better without.

It occurred to me that I have been trying to surrender to an authority and the authority is reality. It would be healthy for me to work less. I have been trying to get my husband to do more and standing my ground. This process is not going well, at least now. He is overwhelmed and angry with me. So this surrender has increased conflict. Is THAT what is supposed to happen? Sometimes it is. I am not sure yet.

In any event, I could also surrender to the reality that my daughter will be at school in two weeks and we will not have so much work to do. I will also be going to a mindfulness retreat in October, which will give me nothing but time. But I also know that after the dust settles, my husband and I have some work to do on our relationship, as is expected after all we have been through together in the past several months.

Yes, there is work to do in the future. Right now, I surrender to the reality of now. Now it is a gorgeous day and I am about to start my day at the job I love.

 

Staircase is a campground in Olympic National Park in Washington state. It is named, “Staircase” because there used to be actual stairs put into the hillside in order to access it. Staircase is one of the the first places my husband and I went camping, some time in the late 80’s, before we got married. For some reason, we decided to camp there for Valentines’ Day in February! Staircase is on the Olympic Peninsula. It is not only rainy but really really really really really rainy. To make a long story short, my sleeping bag got sopping wet that first night and I ended up crammed into John’s sleeping bag. It was not a large sleeping bag. This is not as romantic as it sounds.

We returned to Staircase last weekend. It was the first time we had been back, since that time. We didn’t stay at the campground but rather, we made a hike to one of the backpacking campgrounds. My brother, James and his wife, Meagan were with us. In fact the trip was James’ idea. He wanted me to be able to go on my very first backpacking trip and since I had heart attacks last spring, my family carried all of the heavy stuff. I was required to carry anything but felt strong enough to carry my own things, in a small backpack. We had a wonderful time. I was so glad that we took on the challenge. I was pretty tired when we got back, though and it took a day and a half to re-adjust.

My return from backpacking coincided with the beginning of cardiac rehab. Cardiac rehab is three times per week. Counting my commute time, it is 8-9 hours per week. Most of it involves doing cardiac exercise. We also use hand weights, as a group. We are hooked up to heart monitors and get our blood pressure checked before and during exercise. We are supervised by nurses and exercise physiologists. They are skilled and caring.

I originally put off cardiac rehab because I thought it would be too easy. However, it is individualized to each patient. I sincerely enjoyed my workouts during the first week. By the weekend, however, my ass was kicked!

I am still figuring out how to pace myself. This is an ongoing process. I am so grateful to have the support in my recovery. However, I find myself during the last two days thinking, “Really? I have to start over AGAIN!?”

Although my cardiac recovery has been somewhat different than my recovery from cancer treatment, there are some similarities. For one, there is intermittent heavy fatigue. There is also forgetfulness and spaciness. Stress and fatigue can do a number on the brain. It is real and it can be difficult.

There’s always a staircase. I’ll keep stepping as long as I can.

 

 

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.

DSC07413I have been working for several months now to reduce the amount of flailing involved in finding more balance in my life. I was working on this before the first heart attack on 4/27 and I’ve attempted to tromp on, one foot in front of another, since the second heart attack on 5/5.

I have been overwhelmed but a month or so, I thought, “Just work on changing one thing.” The change I worked on was increasing the frequency of my walks, which had slipped from five days a week to three days a week. Last week, I walked five times, helped by the long holiday weekend, but I do feel like something has shifted in a positive direction.

My meditation practice had also dropped off. My friend, Nancy, and I are now back to taking a walk to and from her house to the Frye Art Museum for their weekly free sitting meditation, which is excellent. I rarely get the chance to socialize with my closest friends let along exercise and meditate, too!

Someone asked me recently, “How is your heart?” I said, “I don’t really know. It’s not like when I had breast cancer and people were checking on my all of the time.” I’ve stayed at the hospital twice, each for two nights, and had a half-hour long outpatient appointment with a cardiologist on June 2nd. That’s it. I remembered something from my June 2nd appointment. My cardiologist asked me if I wanted to do cardiac rehab. At the time, I thought it meant going to group classes to learn stuff I already knew. Honestly, I wasn’t entirely ready to think of myself as a cardiac patient. I am still working on that.

Meanwhile, I’ve been considering seeing a personal trainer to reinvigorate my physical exercise. I would also like to work on my physical strength and stamina. My hesitation in working with a personal trainer is that I am a cardiac patient. Hmm, maybe someone who specializes in cardiac rehab would be helpful?

I checked the website for the Swedish Cardiac Rehab services. Yes, there are some classes but there are individual appointments as well as an individualized health plan. There are many visits. I called and will start after I return from the Mayo Clinic.

I am relieved. They will be able to help me gauge my progress. They will be able to tell me what losing 45% of heart functioning does to a person. They will help me keep on track.

I coped with breast cancer extremely well. (It still sucked, by the way.) I had a really good self-care plan. But I didn’t make all of my life changes at once. I had forgotten that.

Last Friday, I had a moment that I noticed. It was an intense feeling of well-being. It reminded me of moments I had as a child sitting in the grass, picking dandelions, and blowing the seeds in the air. There’s that blissful moment of watching them take flight.

I am reflecting back on that moment today as I begin a new week. I am holding on to the feeling of letting go.

As always, peace to you, friends.

-Elizabeth

So much of life is waiting for situations to resolve, one way or the other. I received a notification from my insurance company a couple of weeks ago. They requested a medical record review to determine the “medical necessity” of some scans I have scheduled at the Mayo Clinic as part of my diagnostic work-up for Spontaneous Coronary Artery Dissection (SCAD).

When insurance companies ask for a record review for the kind of procedures I do as a clinical psychologist, the review can take a very long time. When I received my letter, I thought, “Okay, this trip to Mayo may not happen in July, or perhaps ever.”

The Mayo Clinic won’t see me unless I am able to do all of the things they do to assess SCAD. Plane tickets and hotels have been reserved. My schedule is open for the week of hypothetical travel. As a self-employed person, that means I have no income coming in that week.  I’ve invested emotionally, physically, and financially in this trip.

I tried not to think about this too much and I was about 60% successful. My daughter is transferring to Western Washington University in the fall. This is good news but it presents logistical and emotional challenges. She missed the deadline for student housing and needs an apartment. I saw an opening in my schedule to take her for a few days to Bellingham, WA, near the Canadian border, to look for apartments. I talked to John first. He thought it was a good idea. My kid thought it was a good idea, too. I then cancelled three days of work and spent many hours lining up apartment visits.

Meanwhile, all of us were freaking out about the girl moving out, in our own individual ways. The girl freaked out about living on her own. So did hubby. To make a long story short, I was the only one ready to make the trip to Bellingham. I was mad, to say the least. But I wasn’t mad for long. I had a chat with John and told him that apartment hunting was a one-parent job, not a two-parent job, and that I didn’t need to be the parent in charge. He was happy to take over. Then I hit the road and decided to make the three days a personal retreat, something I wanted to do this summer, anyway, and had to cancel due to the stupid heart attacks. I had a great time and came back home refreshed.

Meanwhile, I was waiting on word from either my insurance or the Mayo Clinic. As it is, I used frequent flier miles to book two separate return tickets home. The first ticket is the “evaluation goes as planned” ticket. The second one is later, in case I need two days of extra scans and appointments. The Mayo Clinic suggested that I plan accordingly, so I did. I am hoping to return earlier not just to save money on hotels. The girls’ university orientation/registration/apartment hunting trip is happening on Monday, 7/24. I want to be there.

This is logistical complexity that stresses me out more than a bit. It gives me great empathy for the many folks for whom the logistics of healthcare dominate their lives. They have to live the rest of their lives on the edges, assuming that they don’t sleep through that part. Being sick is exhausting. Getting better from being sick is also exhausting.

I am a woman of some means and a hugely supportive network of friends and family. This experience makes me think about the rest of our country. What the hell, America? People are worth something. Healthy people are worth something, even if one is being selfish and crass. Oh yeah, this whole Trump being president thing is also a chronic stress for me. Imagine if I were an immigrant? Or any other marginalized person?

The good news is that I got my follow-up letter from my insurance two days ago. My scans have been pre-authorized. Some unqualified insurance employee has deemed that the Mayo Clinic can do their job and that I can benefit from their expertise. This is a positive outcome to a negative process. For now, I will focus on my trip to Rochester, MN.

Peace to you, dear friends.

I find myself quiet since my heart attacks. Although I am working about as many hours a week as I was before, I have reduced other responsibilities, which has freed up time and space. Further, my husband is working most nights right now.

At times, I find myself craving more to do, more to fill up the spaces in my life. At other times, I am thankful to have time and place to just be. When I was going through breast cancer treatment, my life was really busy with healthcare appointments but I also had significant amounts of time off from work to recover from surgeries. I did a lot of walking, writing, and thinking. Sometimes I got lonely but often I was in a mindful space where it was possible to feel and be and breathe.

There are more pauses in my life than there were before, especially when I was working my butt off in grad school, moving constantly, and adjusting to motherhood while building a career. The challenges between the pauses, however, are less predictable. Breast cancer at age 46. Almost exactly 5 years later I found myself hospitalized with two heart attacks. The heart attacks were even more surprising than the breast cancer. In terms of cardiac risk, the odds were strongly in my favor.  Even the report of the lipid profile that was run while I was in the hospital the day after HAVING A HEART ATTACK, has a summary at the bottom, “below average risk (female)”.  This estimate is not necessarily wrong, by the way. It does not read, “no risk” or “zero risk”.

When it comes to my physical health, I’ve had an unlucky five years. But I am lucky in so many other ways. One of those ways is the time that I have right now. I am headed to the Mayo Clinic in Minnesota next month to have an evaluation for Spontaneous Coronary Artery Dissection (SCAD). I scheduled my appointments to occur when I had planned to take a trip to the beach, by myself.  The part of the trip that is staying the same is that I am going by myself, which is my choice. My husband will attend my consultation with the cardiologist by phone.

Although it is true that I have had more fatigue lately, I honestly feel about 80% of my old self, most the time. Most of the 20% reduction is due to difficulties with my sleep. The daylight hours are long this time of year and with lots on my mind, it is a bit harder to get back to sleep if I wake up from the sunrise or my husband’s snoring. I do, however, continue to have a day or two out of each week that feels like the air was let out of my tires.  Nonetheless, I have returned to working in my garden as well as to the pottery studio. I find both activities highly meditative.

Silence is very important to my healing process. Today I feel a lonely kind of gratitude, but it is gratitude, nonetheless.

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.

I wear two rings, an engagement/wedding ring, which I’ve worn since 1990 and an anniversary ring, which I’ve worn since 2005. I had the anniversary ring appraised after I had it designed. However, I have not ever had my wedding ring appraised. It has been 12 years since I had the other ring appraised. I have NEVER had them checked by a jeweler. That is something that I am supposed to do each year. Oops! Last Sunday, I dropped my rings off at a jeweler to be checked, cleaned, and appraised. I will pick them up next Sunday.

I am re-appraising many things, not just my diamond rings. Most of all, I am re-appraising my lifestyle. It’s the same that happened when I was diagnosed with breast cancer in 2012. And guess what? Having two heart attacks, out of the blue, also gives me pause and time to re-appraise my life and how I live it.

I have been coping, so far, rather well. However, I can realistically tell you that I am uncertain. I am afraid. I think these are reasonable reactions. I am working successfully to enjoy each day. I have embarked upon another voyage of ambiguity. This time, however, I may have a quite rare cardiac disease. Fortunately, I have found resources through the breast cancer blogging community, which is connected to other health care advocacy groups. Unlike my breast cancer treatment, in order to find specialists this time, I’m going to need to travel out-of-state.

I am someone who deals better with adversity if I have some past experience dealing with it. I am not grateful for having had cancer in the past, but I’ve got to tell you that I learned a lot in that experience and I am drawing on it now.

Today, it is beautiful and sunny. I’ve had a good work day, part of which included time with a kindergartener. I came home to my loving husband. For now, I will meditate on that.

George Lakoff

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

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