The knocking of my heart

“Why are you knocking at every other door? Go, knock at the door of your own heart.” — Rumi

I debated whether or not to post this entry, because it isn't directly about breast cancer. It is, however, about something that indirectly happened as a result of the radiation treatments, and so I think it deserves mention.

Remember the shortness of breath I mentioned in a previous entry? The Thursday before my last radiation treatment (which was on a Monday), the shortness of breath and heart palpitations worsened. My anxiety about what could possibly be wrong only made the symptoms worse. I thought I was having chest pains, and, afraid I might be having a heart attack, I called 911.

It's an odd thing to call 911. Three little numbers set so much in motion. An ambulance arrived in a few minutes. I was given baby aspirin and nitroglycerin as a precautionary measure, and 10 minutes later I was in a hospital.

My heart rate and blood pressure were high, my heart was beating irregularly, but a blood test quickly showed that I had not had a heart attack. I was mighty relieved by that news.

The doctors kept me overnight for observation. I underwent a number of tests that showed that my heart and lungs are fine. I do have an arrhythmia, which was showing when I was admitted, but the doctors said that it is very normal and not anything to be worried about in the absence of anything structurally wrong with my heart. That's a huge relief.

The only thing they did find was that my electrolyte levels were low, especially sodium. I generally eat a low-sodium diet and drink plenty of water. The radiation made me thirsty, so I was drinking more water than normal. I guess my body became depleted in sodium over the course of the radiation treatments until I was really out of whack. The odd thing is, I never had any of the classic symptoms of low sodium (or hyponatremia): nausea and headache. If I had, perhaps a doctor or friend might have suggested that I drink some electrolytes.

I have follow-up appointments with a cardiologist and an endocrinologist, but I kind of suspect they won't be able to tell me anything different. This may be something I simply need to be aware of and manage: make sure that I get enough sodium, especially when my body is under stress, I'm drinking more water than normal, or I feel heart palpitations. The heart palpitations and shortness of breath were scary, but I'm grateful to have gotten some good information out of it.

In other news, it has been one week since my last radiation treatment, and I'm starting to feel more normal. The fatigue last week was tough; I was possibly more tired than I was the final week of radiation. So far the past two days have been better, though. I'm hoping the trend continues.

Last Day - A Photo Essay

My course of radiation therapy is done! I had my last treatment today -- 32 treatments in all over the past six weeks. To commemorate, here is a photo essay of what the treatments have been like.

Radiation Oncology

First, I arrive at the Radiation Oncology wing of the breast center and sign in.

Waiting Room

Walk around the corner to the small waiting room. Once I change into the gown, I'll put my personal things into one of the lockers and wait to be called for treatment.

Ready For Treatment

I remove all clothing above the waist, then put on one of the provided white gowns. Since I lie on my back to get my treatments, I'm supposed to put the gown on so it is open in the back. If I'm lucky, I get one with long ties so I can wrap the ties around to the front, as in this picture. If I'm not so lucky, I have to awkwardly try and tie the gown in the back. While it was nice to lie on my back for treatments, I kind of envied women who were treated face down, and so got to wear their gowns the right way 'round, open in the front. 

Radiation Machine

This is a photo of the Radiation Machine. The big round beam emitter swivels around to the correct angle for the treatments. My treatment consisted of radiation "hits" from three different angles. I lie on the white sheet-covered bed, with my arms resting in the arm rests along side my ears. The blue thing is a specially molded bean bag sort of thing to help keep my right arm in the correct location. 

Beam Emitter

This is the beam emitter. This is what I see above me as I like on the treatment bed. The treatment lasts no more than a minute. I was usually at the breast center about 20 minutes altogether, unless it was my day to see the doctor.

Bell Ringing Ceremony

The radiation techs do a little ceremony for patients on their last day. I rang the bell three times and received a little pin in the shape of a bell. Hugs all around, and I started getting teary-eyed. 

The plaque on the bell reads:

Ring this bell

Three times well

To celebrate this day

My course is run

My work is done

And I'm on my way

Nearing the end

It is now the eve of my last week of radiation. I have had 27 treatments, with 5 to go. I haven't written in a while because, frankly, I haven't had much energy to spend on blogging. I have been very tired for weeks, and now I'm tired most of the time.

This past week I began experiencing shortness of breath during the 10 minute walk from my car to my office, and back. It was very unexpected. I had a chest x-ray and had my blood hemoglobin checked. Both were fine: my lungs are clear and I don't have anemia. The symptoms--which now occasionally also include lightheadedness and dizziness--seem to be worse when I haven't eaten. So perhaps I'm having a low-blood-sugar reaction?

I can try and eat more, especially more protein, and see if that helps. If I can't get the lightheadedness under control, I'm going to have to stop working even a limited schedule this week. I don't want to run the risk of fainting on the way to my car.

Of course, it is the last week of therapy. I gather many (perhaps most) women don't work at all during radiation. The last week is always the hardest. I had always thought I might have to take the last week off work. If that's what I need to do, so be it.

The shortness of breath has forced me to stop taking my daily half-hour walks. I kept that up through the first four weeks of radiation, but I've had to stop for the last two weeks. I also continued my yoga practice most evenings during those first 4 weeks. I can still do a  bit of yoga, but I've slowed that down, as well.

I know the fatigue is temporary; I'm told I will recover in a couple of weeks after the radiation ends. But the leaves are turning now, and I would love to be out in the woods among them, lengthening my stride and enjoying the Indian summer.

Outline of my days

I have completed 12 of 32 radiation treatments. I'm over 1/3 the way through the treatments. Here's what I can say about them:

I arrive at the Radiation Oncology wing of the breast center at 8:30. I sign in at the front desk and head to the changing room, where I undress above the waist and put on a white gown. Because I lie on my back for the treatments, the gown needs to open in the back. The first week, I picked the Small/Medium size gown, which seems appropriate to my size. But the ties of the small gowns don't wrap around to the front, and they are hard to tie in the back. So this week I started picking the Large size, which has ties that are long enough to wrap around to the front. I look like a monk wearing white.

I put my clothes and things in a locker in a small waiting area and have a seat to wait for my turn. There is usually one or two other women in the waiting area, and sometimes a volunteer who helps folks get oriented on their first day. The volunteer also keeps the waiting area stocked with water, which I appreciate. The radiation seems to make me thirstier than normal.

I usually get called for my treatment after 5 or 10 minutes, but if they are running behind it could be longer. All the technicians are very nice. I lie on my back with my arms resting in arm rests above my head. Someone places a cushion beneath my knees. I am trying to be brief tonight, so I'll leave a description of the actual treatment for a later post. Suffice it to say that it all takes only about 10 minutes.

Back in the waiting room the other ladies are surprised that I'm done so soon. I get my clothes from the locker and slip back into the changing room. Before I put on my bra, I spread some of the lotion I was given over the just-radiated breast. This is supposed to keep it soft and lessen the skin side effects. So far, I have noticed that the nipple of the irradiated breast appears darker in color than the non-treated breast. And occasionally it is itchy for a few minutes. But nothing more difficult than that.

Then I say goodbye to the other ladies and leave the breast center. If I don't have a meeting at work I need to get to, I will usually go for a walk for 15-30 minutes before heading to work. Walking helps to integrate the energy of the radiation, and since I'm starting to feel fatigue in the afternoons, it might be the only exercise I get for the day.

It doesn't take long to get to work; I'm usually there by 10am at the latest. Mornings are my highest energy time. I think I may actually be more energetic than normal after the radiation. It feels like a caffeine boost.

But then I crash a few hours later, around 1pm or so. I take a break and let myself recline on a comfy chair in a darkened conference room. Once I let myself rest I quickly become very relaxed and sleepy. After half an hour, maybe 45 minutes, I feel less deeply tired and pull myself back to work. But I don't feel refreshed. I don't feel fully awake again generally for the rest of the afternoon. I have been leaving work around 4pm most days.

Evenings are better. So far I have felt mostly awake by evening. Especially if I do a bit of yoga after I get home. I find that if I can find the energy to move at least a little, I start to feel normal pretty quickly. I do not, however, have any difficulty getting to sleep. :-)

That is the outline of my weekdays in the past week or so. I am still trying to get a handle on the best strategies for getting through the experience. It would be much easier if I weren't working. Between work and the fatigue caused by the radiation, I don't have much energy left over for fun. I have healed enough to be able to do a little yoga this week, though, and that's fun!

Mostly I keep thinking that I'm more than 1/3 done. Four more treatments and I will be half-way there. I tell myself it will be over before I know it.

Beginning in beauty

In beauty I walk.

With beauty before me, I walk.

With beauty behind me, I walk.

With beauty below me, I walk.

With beauty above me, I walk.

With beauty all around me, I walk.

It is finished in beauty,

It is finished in beauty,

It is finished in beauty,

It is finished in beauty.

'Sa'ah naaghéi, Bik'eh hózhó

—from a Navajo Ceremony

(Four Masterworks of American Indian 

Literature, ed. by John Bierhorst, 1974)

I start radiation therapy tomorrow. Of every part of my journey so far, this is the one that seems to draw the most negativity from people. I have heard that radiation will make me hot and uncomfortable, and I will want to lie for hours under a cool ceiling fan. I will get a sunburn. My skin will break down and ooze. I should take the last couple of weeks off work because I will be in so much pain. I will get very tired during the end of the treatments, a fatigue that will last for months afterward.

Yikes! That sounds horrible! At some point yesterday I realized I had been taking these experiences too much to heart. Believing that would be my experience as well, it was almost as if I was already living in this painful future.

That’s no way to be.

That New Age phrase “you create your own reality” usually makes me cringe. It seems an overly simplistic platitude. There is some truth to the concept, however. My attitude in a situation makes a huge difference in how I experience it. Just think about my experience with getting blood drawn. When I’m relaxed and calm, I have little pain or bruising. But when I’m anxious, I experience more pain and more bruising afterward. 

One way that I have found to shift my experience in this way is to practice reframing, or finding alternate ways of viewing situations. Needles become “spears of healing” instead of simply being torture devices. Or I visualize my body as made of butterflies; I simply ask the cancer butterflies to fly away. 

Since it seems that everyone’s experience with radiation therapy is slightly different, this could be a very good place to practice some reframing.

An approach has started to emerge that draws on my past experience with Native American spirituality.  Instead of a difficult, potentially painful, pain-in-the-ass thing I need to get through, why can't I instead reframe this as a sacred time of healing? Maybe a six-week-long shamanic healing ceremony? 

With my thoughts along those lines, the Navajo prayer that begins this post arose in my mind during this morning’s meditation:

With beauty before me, I walk.

With beauty behind me, I walk.

With beauty below me, I walk.

With beauty above me, I walk.

With beauty all around me, I walk.

What a lovely antidote to the unpleasant images I have been hearing about radiation! I love it!

And since taking walks in the woods was my favorite part of my healing process, and a habit I plan to continue during the course of radiation, this lovely prayer can be a way to bring that happiness with me into the treatments. 

I’ll have to ruminate on this some more. My radiation sessions are first thing in the morning before work. Maybe I will pull out my drum or rattle each morning? Make offerings of herbs? It’s been a long time since I walked the shamanic path. Perhaps it is time to bring some of that back into my life.