When I was first diagnosed with breast cancer and during the seemingly endless months of chemotherapy and radiation, my worst fear was that I'd have a distant recurrence (develop metastatic breast cancer) at some point in the future. My second worst fear was that I'd develop lymphedema.
Having a recurrence is still my worst fear but it doesn't consume me like it used to, not because there's any less reason for concern, but because I've gotten more used to the idea. This will be a topic for another time.
For the first year after treatment things seemed pretty much okay with my left arm. I had developed some cording immediately after my mastectomy and total lymph node dissection, but overall the arm situation seemed to be stable. I did occasionally have some minor swelling in my hand- a barely detectable puffiness in the lower part of my left index finger and its companion knuckle, weirdly enough, but life was good. I continued to work out. I trained for and participated in two sprint distance triathlons, I carried wood, walked dogs, etc., etc.
I did these things while at the same time being careful to follow the advice for preventing lymphedema- I avoided lifting heavy weights with that arm, avoided overtiring the arm, avoided carrying bags and things on that side, avoided extremes of heat and cold, I wore my compression sleeve for airplane travel, I was careful to avoid injury to the affected arm and hand. All that stuff. Blah, blah, blah.
My efforts seemed to be working and I was just starting to feel more relaxed about my potential for arm issues when, all of a sudden I developed lymphedema. I have no idea what actually triggered it, although I've run through a few different theories.
The most sensible theory is the simplest and most obvious: I developed lymphedema because I had 17 lymph nodes (6 of which had been infiltrated by breast cancer) removed from under my left arm, placing me at high risk for developing this condition. The fact that I am physically active and not overweight stacked the deck a bit more in my favor but was not enough.
All this actually happened last spring- 2009- and I haven't written a word about it- in part I think because the whole thing flipped me out.
For the first month or so after my arm swelled I lived with a sense of panic not unlike what I felt when the breast cancer was first discovered. A bad, scary thing was happening to my body and I was, once again, along for the ride. To make things worse I couldn't tune it out because my arm, in addition to looking a little bit bigger, kept aching and so I couldn't forget about it.
That said, and fast forward almost a year, and I've gotten used to it, because that's how it works. Bad things happen, you flip out for a while, and then over time you get semi-comfortable with the new status quo. This is as much a natural law as the law of gravity. The fact that we're made this way is probably the main reason that half the world hasn't committed suicide already. It's an excellent design feature, very adaptive.
Nowadays my arm and I co-exist in semi-harmony. The fact that so far it's just a little bigger than the other arm and not gigantic (which can happen) has definitely helped. I no longer have a rising feeling of hysteria every time I look and notice (again) that I can't really see the tendons on the underside of my left arm like I can in my right arm. The dull ache that is often present has just become part of the "background noise" of my overall sensory experience. I've gotten to the point where I put on my compression sleeve in the morning with the same attitude another person might put on their underwear. I usually put the sleeve on the second I get out of bed, if not before I get out of bed, because otherwise my arm will hurt.
From a medical standpoint my arm has is "stable" but I don't hold out much hope that it's ever going to get a whole lot better than it is right now. Maintaining this semi-good state of affairs takes vigilance. Mainly I always wear the sleeve and although I exercise and use the arm I'm attentive to any feelings of heaviness or fatigue, since these are often warning signs of lymphatic overload and danger of swelling. The toughest thing for me right now is figuring out how best to take care of my arm while taking care of Elliot, aka "Mr. Baby," who now weighs over 15 pounds. We've figured out some obvious things, like using the front carrier as much as possible and so on, but there's still room for improvement. I think part of the trouble is that it's FUN to lift him up with both arms sometimes and I can't always resist doing it but maybe I should resist it.
Last spring and over the summer I had some manual lymphatic drainage treatments with an occupational therapist. The treatments were covered by my insurance and were vaguely enjoyable- meaning that I got to lie on a table in a warm room decorated for the purpose of creating an atmosphere of serenity and healing- right down to the plug in fountain, aromatherapy smells, and New Age music in the background, while having my arm and other lymphatic pathways gently massaged. It was a nice way to relax in between seeing morning and afternoon clients and definitely more fun than chemotherapy or radiation. Still, I was under-impressed in terms of actual clinical benefit. My arm still looked and felt about the same to me.
Recently I switched to a new ob-gyn affiliated with the cancer center at UConn Health Center in Farmington, CT. Among other things that I liked about her she is familiar with the issues and problems that come with having lymphedema, and gave me the name and number of a practitioner that might use some additional forms of treatment. Since the arm has been stable I haven't rushed to follow up on this but I will probably look into it.
I've said a lot here. More than usual. It's been interesting to realize that although my intent when I started this blog was to write about my cancer experience I for the most part proceeded to write about anything but. I think mainly I wasn't ready.