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.

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.

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.

I have been working half-time this week, following what turned out to be two small heart attacks. As I wrote previously, the current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD). It is infrequently diagnosed and mostly seen in women in their 40’s to 50’s, physically fit, and with few or no heart attack risk factors. The cause is unknown. It is possible for dissections to heal so I am taking a number of medications to improve my heart functioning as well as to prevent the formation of blood clots. I have follow-up tests and lots to learn about heart functioning.

This was a shock, to understate things. Just two months ago, my husband and I were in Southeast Asia. We were walking through ruins in extremely hot conditions, just as we’d done when we were in our 20’s, on our honeymoon in Egypt during the summer. During the vacation, I was really pleased by the health of my body and what I was capable of doing. I thought of trips that John and I could take in the future.

Yesterday, I had a mammogram. It was normal. My 5 year “no evidence of disease” anniversary is in two weeks. This is big news that has been upstaged by my heart. In the past, I have compared cancer to a natural disaster. It can happen to anyone, no matter how virtuous. I am re-thinking that metaphor, at least in my experience. My breast cancer was more like a failed safety inspection. The treatment was to prevent a disaster. One of the harder aspects of breast cancer treatment is that it made me feel sick when I hadn’t felt sick.  The heart attack was like a natural disaster, a small earthquake followed by an aftershock. They caused damage to my heart. The medications I am taking now actually seem to be making me feel better.

Today, I have no work responsibilities or health care appointments. I am taking care of myself. I am listening to my body. Yesterday, it told me that taking a walk with a friend was a good idea and it was. Today, my body told me to sleep in. It has also told me to spend a lot of time resting on the couch. Finally, it has told me to take pause and check in with my thoughts and feelings.

One thought that passed my mind was, “I’m still healing from the cancer and now I have heart problems.” I felt the urge to cry “foul!” (And it would have been fine if I had.) My next realization is that I have always been healing from multiple wounds.

We are all healing from multiple wounds.

Be kind to yourselves, friends.

Don’t turn away. Keep your gaze on the bandaged place. That’s where the light enters you.
-Jalaluddin Rumi

DSC04219

As many of you know, I have been taking pottery classes for the last year or so. I typically throw (make forms using a pottery wheel), rather than hand build. Learning to use a pottery wheel is challenging. I am still learning how to center the clay on the wheel head, consistently. There are all of the steps to remember. Even if one carries out the steps, there are lots of variables that impact how fast the wheel should go at each step, the amount of water that should be added during throwing, the amount of pressure applied by each hand, the positioning of hands and fingers, and the speed at which the hands and fingers should move up the clay. On top of that, the type, size, and hardness of the clay is another variable to be considered. Finally, there are shaping tools that can be use. There seem to be about 5 million pottery tools in existence. One type of tool can have so many variations. People who are very experienced know not only how to use the tools, which requires finesse, but how to select the best tool.

When I first started throwing, nothing really turned out. That is normal, I am not being overly self-critical. Then every once in a while something would turn out and I couldn’t figure out what I’d done differently. I like bowls, so I threw a lot of bowls. I decided I wanted to be able to throw a salad bowl. Clay forms shrink about 7% from the time they are thrown to the final firing so the initial throwing is of a larger than desired piece. For me, a salad bowl is a pretty big bowl, and it certainly was when I was a beginner. Nonetheless, I was inspired by the challenge to throw “a big bowl”.

I had enough success with big bowls to keep me going for awhile. I have to say objectively, I have big bowl-making potential. There were a lot of flops, though, not to mention many bowls that cracked in the kiln. None of my bowls were made with an intention to make anything but a bowl. I do not yet have the skills to plan size and shape ahead of time. Okay, more accurately, I do not yet have the skills to implement the size, design, thickness, etc of the bowl I have planned in my head.

One quarter, after thinking I would just keep realizing my “big bowl potential”, I made flop after flop. I made bowls that were of uneven thickness or that were not round, or that were not level on the rim. I made bowls that looked so so promising as I pulled up the sides to make them thinner and thinner, only to collapse in on themselves on the wheel. More than an hour’s work and all I could show for it was a wet mess on the wheel and sore throwing muscles.

All through the process, I read about bowl-making. I watched Youtube videos on “big bowls”. I watched my teacher’s bowl-making demonstrations, which she typically did once per quarter. Each time, I learned something new and tried to apply it to my big bowl-making. Then I gave in to the idea that had been lurking in the back of my head, which was to make little bowls. They are faster and easier to make. I could focus on my technique. I started making little bowls and my bowls started getting more refined.

Last week, I met with my psychologist, Rebecca. It was the first time I’d seen her in a while. As I mentioned last week, I’ve been dealing with some challenges related to stress and my heart health. I brought Rebecca two of my little bowls as a gift. We had a productive session.  I have some work to do in my life. Physically, my healing from my cardiac event is not an linear as I’d like. There are fits and starts. My diagnosis is undergoing refinement as my physicians are gaining more information. The current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD) a rare condition, caused by a tear in an artery wall. Some blood flow is diverted to outside of the artery wall, lowering blood flow. Further, blood that gets outside of the artery wall is more likely to clot, which can press on the artery, narrowing it. SCAD is present in men and women, however, when present in women, they tend to be in their 40’s and 50’s, physically fit, and with low risk of heart disease. What causes these tears is unknown.

My prognosis is still good but there is uncertainty as to the length and course of my recovery in the upcoming weeks. I have resumed a practice I started right after my breast cancer diagnosis, five years ago, which is to meditate about 10-15 minutes per day. I’ve had to temporarily cut back on my walking until my heart heals so each day I do the little bit that I can do.

I just learned that Doris Ann Price, stage 4 cancer patient, breast cancer advocate, mother, wife, dancer, and inspiration for the M.A.C. lipstick shade, “Lady Danger” died today. I met Doris Ann on social media, struck by her smiling face and ever present “cancer sucks” button, attached to a black beret. Doris Ann conveyed the horrible facts about breast cancer as well as her bright and ebullient spirit. Despite one of her tumors, which gradually left her unable to speak, Doris Ann’s voice, in her writing and actions, was clear.

I met Doris Ann in person a few years ago when I was visiting North Carolina for my graduate school reunion. At the time, she lived in Raleigh. We met at an arts and crafts gallery in Carrboro, NC and had lunch together. Doris Ann was a petite woman who moved like the dancer that she was. This was remarkable to me as she was quite ill even then and in her late 60’s. Her appearance was also one of an artist from her bright red lipstick, hip eye glasses, black and red clothing, and black beret. Doris Ann wore large artistic jewelry.

Sometimes Doris Ann could come across as almost unbelievably positive on social media. I can tell you that Doris Ann’s positive spirit is real as was her intelligence and realistic grasp of the gravity of her health. She also shared with me some personal pain in her life. Doris Ann was as real as can be.

Doris Ann enjoyed a beautiful relationship with her husband, Aaron. She had two loving children, Sharon and Roger. They have my heartfelt condolences.

Doris Ann led a full life with every breath. She worked hard to find effective treatment for her self. Doris Ann worked hard for breast cancer patients, past and present, everywhere.

Thank you, Doris Ann, for your friendship and leadership.

Love,

Elizabeth

Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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