Archives for posts with tag: Spontaneous Coronary Artery Dissection

It’s Breast Cancer Awareness month. I don’t think I’ve blogged about it in years. I typically try, unsuccessfully, to ignore it. The superficiality of some of the campaigns bothers me. But if I am honest, I also don’t share the intensity of the anger some people still feel about it. This is my 6th October since my breast cancer diagnosis in 2012. There has been a dramatic decrease in pink ribbons and associated nonsense since that time. There have been high profile works of film, journalism, and even coverage on late night comedy shows that have revealed the money farm that developed to exploit and sexual breast cancer for profit. Yes, it is still a problem but progress is progress. Progress is to be celebrated. So I celebrate the pink reduction.

Between the “think positive” crowd to the “everything about cancer sucks” crowd, I feel increasingly on my own. Although I tend to have more in common with the “everything about cancer sucks” crowd, I do worry about my not-very-tightly-held secret. I’m going out on a limb here and admitting what my blogging buddies know already: Not EVERYTHING about having breast cancer sucked. There were aspects of my experience that exposed me to what is best about humanity. I was lucky enough to be very well cared for by my healthcare team, by my family, and by my friends. I learned some things about myself in the process of illness that have become what I hope to be, lifelong lessons and happier ways of being.

I was at cardiac rehab yesterday and one of the exercise physiologists commented, “You have such a positive attitude. Have you always been this way or is this new?” I told her that I was lucky in that I am a naturally upbeat and resilient person but also that I have done much to nurture these qualities since I was diagnosed with breast cancer in 2012. I also recently read my cardiologist report from the Mayo Clinic. In it, I am described as “a very pleasant psychologist.”

I don’t have to have a positive attitude and I don’t have to be “very pleasant”. But these qualities are helpful to me as I live my life, day by day. They also help me face some hard possibilities, most notably, the fact that I may not live as long as I thought I would. I had breast cancer at 46 and two heart attacks at age 51. I had few or no risk factors for either condition. Breast cancer can recur and I’m really not sure what the risk of recurrence or of developing metastatic cancer is. (I know there is the 20-30% estimate but I find no description of how it was arrived at in the original source materials, which concerns me.) There is a chance that I will have another SCAD event, too. However, there’s very little research on SCAD-related heart attacks, which makes it hard to know. The best estimate at this point is 20% recurrence over 10 years, but that is on a sample of only about 150 women. Further, since the cause/s of SCAD are not understood, there are no markers that can be measured to estimate my risk.

However, unlike breast cancer, stress is modifiable risk factor for cardiac diseases, including SCAD. Consequently, I continue to work on that through meditation, exercise, and through working a reduced work load. Cardiac rehab is going well. I just did my 60 day review. I am stronger and reassured that I am pushing my progress at the right rate. I have also made friends and being cared for by a group of excellent nurses and exercise physiologist. Even if these actions don’t extend my life, they make my day to day life much more peaceful, joyful, and balanced.

Awareness is synonymous with mindfulness. It is the state of being aware of reality, as it is. The use of the term “awareness” for October is ironic in the context of breast cancer because it is used for some dishonest purposes. Not every thing about my breast cancer is bad. Not every thing about my heart disease is bad. They are parts of my life, which include joy, pain, peace, anxiety, and all of the other experiences and feelings of my reality.

Here is a phrase I learned from Sharda Rogell, my dharma teacher at Spirit Rock Retreat Center. It is a phrase about equanimity:

“May my heart be big enough to hold the joys and sorrows without being overwhelmed.”

I’m out on a limb. I think in this moment, it will hold me.

Peace, friends.

 

 

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’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 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.

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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