Sisyphus

New heart, new country, new city, new attitudes, all of it. But first some background.

In 1986 I had a cancer—metastatic melanoma. Huge tumor in my armpit. According to the rule book, you’re supposed to die from this. It was ridiculous. Everyone (except me) was crying: She’s only 22! Bullshit if you ask me. I never did follow orders or expectations very well. But I had to do the treatment, and this was radiation plus an intra-lymphatic immunotherapy from UCLA. But it was the radiation, you see, that came back to bite me so many years later. I guess they knew a side effect would be possible heart damage to the heart, but 30+ years later, none of the original doctors in Santa Barbara were around. And I wasn’t supposed to live very long. Seems about 15-20 years ago, my mitral valve started calcifying. I don’t remember too many symptoms, except that I never felt I was fit enough, even as I earned my black belt in Taekwondo. I just assumed it was cause I older, in my 40s already. A combination of living under high stress in Salalah and the breast cancer in 2016 kicked in the damage. The first time I had the feeling of not being able to breathe I was standing on 23rd St and Broadway in NYC. I was already doing chemo. There was a massive anti-trump rally and I wanted to join it but I simply couldn’t. I had to stop every block or even half block. I assumed it was the chemo.

I mentioned this several times to Sloan Kettering, as they do monitor your heart, but whether they actually bother to read the echocardiograms, I can’t say. They tested me repeatedly, particularly before surgeries, I guess. I had 6 surgeries related to the breast cancer. Over the next few years, this shortness of breath never improved and in fact got worse. I attended the pulmonary lab at NYU and went through the entire rehab. They never looked at my heart, and told me that I was out of shape and needed a personal trainer. Older women will recognize this dismissive behavior. That it could be my heart never crossed my mind.

I kept trying to exercise, but instead of improving, I grew worse over time. I berated myself for not trying hard enough, and figured it came from the reconstruction, which including cutting my lats and wrapping them around my front. Eventually I couldn’t even walk up a flight of stairs—I had to go one at a time. I couldn’t do anything. Back in Oman I continued to use the gyrotonic and do some yoga daily but nothing improved. Like a frog in the proverbial water pot, I didn’t realize how much this came to guide my life until it was an emergency. Tom came to visit and we went to Dubai, where we were planning to move the company. I went to Kings Hospital Dubai Hills to ask about it. I felt like shit, really really awful. I couldn’t focus on anything or remember what I was doing, peoples names, nothing. All I thought about was how far something was, where to rest, how to make it look like I wasn’t resting. I wasn’t interested in going anywhere or doing anything. I did what I needed to do and went home. Even turning in the bed left me gasping. Not much sleep. My heart would race. That was A fib, which I didn’t know about, really. But I knew by this time there was something seriously wrong. They got it straight away at Kings. Mitral Heart Valve Stenosis. Those doctors were fabulous. My new cardiologist, Dr. Carlos, (if you are Dubai and need a cardiologist,) arranged for me to go the Cleveland Clinic in Abu Dhabi and fortunately my insurance covered it. Dr Umar Darr was my surgeon—excellent. I adore him.

In the meantime, I went into heart failure for the next two months before everything could be lined up for surgery. They never told me this, nor about the complications that an untreated mitral valve causes. Thank Heavens. It would have freaked me out. So I had open heart surgery, with end stage heart failure and pulmonary hypertension, and also needed a bypass as the aortic valve was also calcifying. However, my arteries were all fine. It wasn’t a lifestyle thing, it was a direct result of the radiation in 1986.

So they broke my sternum open and took out my heart and put it on a table and worked on it like it was a carburetor. Meanwhile, they packed my chest cavity in ice. This is all stuff I read on the surgical report. No one told me this was going to happen. Thank heavens. I am not a fan of google and anything medical. They kept me in a coma after this for a day or so and then ICU for 8 days. Then the regular hospital for another week. The cardiac team at Cleveland Clinic is stellar. I think there were 30 people in the OR as I went into surgery. I was so grateful I kept bursting into tears whenever I saw my surgeon. All I knew was that I would feel better.

And I do. It’s a bit slow, recovering, and not helped by yet another annoying cancer diagnosis, which required yet another operation, 6 weeks after the heart surgery. Endometrial. I had thought it would be easy, as it was laproscopic. but this second surgery kicked my ass, and 10 days later I’m finally starting to feel better and hope I don’t need another chemo.

The hysterectomy somehow magnified the challenges from the heart surgery. So my progress is not as fast as I’d like, but I’m getting a lot of reassurance from medical people.

This was supposed to be a post about new beginnings but in laying the groundwork, with the cardiac stuff, even though I made every effort to show an economy of words, it’s turned into a huge long post of its own.

I joined a heart valve replacement website group, and it seems most people are much more well versed in the intricacies of side effects, and knock on effects and the procedures and types of procedures, and outcomes than I am. But there are some things I was glad to know were normal, like the depression that follows heart surgery. But it’s made me evaluate relationships and scrape out the useless ones. It’s helped me stop impossible situations. So I left Oman for good. It’s helped me appreciate my life more; something I used to feel, and slowly the extremely tough and difficult situations in Salalah and then Muscat drowned me. It’s given me a clearer idea of who I am and I remember more of it now. How much time I spent (and i think most of us do this) pushing limits, accepting hideous things, constantly rising above whatever was happening, instead of just reassessing and coming up with a plan to continue without the hideousness. Not sure if that makes sense. But it’s a lot I learned or reconfirmed.

And just a NB: after I finished that 1986 radiation, I fucked off to Mexico, hitchhiking down Baja to La Paz. 5 days. And then south to Central America on the mainland. Way better than moping around dying or whatever.