Just a follow up to my earlier post. See the dairy farm in that one photo? Jim heard that 15 cows were killed when the the roof of one of the barns collapsed. That's the kind of winter it's been- even harder on the animals than on the humans.
Only about a year (or two?) later than expected. I did 3.1 with Patches on mostly dirt roads this morning. I still can't run quite the whole time but I'm getting there. It's a great feeling. Winter running in particular can be a source of joy for me. It's a combination of things- the frozen landscape, the light, being warm at the core despite the outer cold, the silence of the woods. This has been such a winter here in New England- it helps is to embrace it. I've been making a point of spending at least a little time outdoors every day- running or not.
I have the luxury of it being a choice since my semi-ruined arm exempts me from shoveling. I try to focus on the perks that come with this- especially since the recent news that there is absolutely no survival benefit in total lymph node dissection (the procedure that caused said arm wreckage). Whatever...just another item to add to my list of reasons to view doctors and the authority of modern medicine with some healthy skepticism. The arm is what it is, and nowadays I find I can mostly do what I want with it. I think hefting Elliot around for the last year and a half has helped. As he's gotten heavier I've gotten stronger. Funnest weight training ever!
What else...Gus is still alive- definitely in his dotage though- complete with diaper wearing. We buy incontinence pads for human males. Sort of amusing in terms of the potential misunderstandings that might happen re: who around here uses them. The house is still standing as are the out-buildings. This is not something we can take for granted anymore, since the onslaught of ice and snow. There's no shortage of collapsed roofs in these parts. We did almost have a fire due to water getting into the kitchen wall. I kept smelling a nice incensey smell one morning as I was getting ready for work- then finally tracked it down to the outlet near the sink which was hot due to shorted out wiring. We still have the fuse out for that part of the house. Luckily the stove, fridge, etc. are on a different circut.
On to my organizing projects if I can overcome my post-run sleepiness.
I took Wendy for a little walk last evening after dinner. On our way home I noticed a deer walking down the road towards us, stopping now and then to graze. I decided to stand still and see what would happen. Wendy cooperated by lying down next to my feet. The deer kept coming and basically walked right up to us. I don't know what the story is with the tag on its ear. Wendy stayed calm the whole time. I think she may have wondered why it didn't ask to play. Apologies for the poor photo quality. I took the photo with my iphone and it was dusk. It seemed worth sharing nevertheless.
Every time I look at this blog I think about how I need to write a follow up post about the rooster...what to call it..fiasco? tragedy? trauma? learning experience? Although I sounded glib in that old post we felt really bad about the roosters, me especially. I was glad that they were gone since it had been so awful, mainly for the chickens, having them around, but I was not glad that they were dead. I feel sad remembering them. Surprising as this may seem I think of them fairly often. On the positive side the whole experience cleared up my longstanding ambivalence about whether to eat chicken or not. I don't. It's over. Same with fish. Done. Same with consuming dairy products- done with that too. This change has been surprisingly easy, a non-event for the most part- also a relief in this odd way that I never would have expected. It's as if by freeing other beings from being eaten by me I have freed something in myself. It's a nice way to live.
We still have the chickens (five) and I'm at ease with this, at least for now. They seem content, roam pretty freely except at night when we close them up in the coop for their own safety. We have a lot of racoons and coyotes around who'd make quick work of them- it's happened on a couple of occasions when we've relaxed our vigilance. Occasionally I'll eat something made with one of their eggs but if they stopped laying that would be fine with me too. They're pretty and fun to watch, plus they help out by keeping the yard clear of ticks- good for the dogs and good for us.
Interesting how things change, eh? I surprise myself all the time.
Happy May Day! Weird how it feels more like June. It's in the 80s here and I'm indoors enjoying the cool of our well shaded house, having fled the afternoon heat. Still, the warmth and sun are overall a pleasure to have back. I'm being super bold and have ditched my compression sleeve for a few hours. For almost a year with the onset of lymphedema I have been wearing a sleeve during all my waking hours. Recently my arm has been feeling a bit better, leading me to think that I might be able to try going without the sleeve for periods of time under certain circumstances. We shall see. For starters I'm going to see how it goes if I go sleeveless during times when I'm just sitting around, reading or whatever. I'm always going to have to wear it when I'm using the arm, engaging in physical activity in warmer weather, or flying of course. It would be so nice not to have to wear a sleeve all the time. It's such a little thing but I just long for the freedom of sleevelessness- from the physical comfort perspective (I've always HATED restrictive clothing) and because I'm pretty vain. Obviously having the lymphedema has required me to suck it up. Finding compression garments that aren't hideous via Lymphedivas has been helpful. In addition to helping me look decent, and maybe even kind of cool in an artsy, punky sort of way (which conveniently suits me), it has freed me from having to go to the scary, creepy land of pinkdom that is the local, all-things-breast-cancer, supply store.
I've been wanting some sweet woodruff for the garden but I don't think I've voiced this wish out loud nor have I written it on a Post-it note. I don't think I have anyway. I went out to hang clothes just now and found this! Thank you mystery sweet woodruff giver!
We are having a cold spell with temperatures in the single digits for the past two nights. Last night I was kept awake by a creature (mouse? squirrel? rat?), driven indoors by the cold, gnawing on either my bureau or something in the wall. Whatever it was trying to do was pretty labor intensive since it took most of the night. Hopefully it's done and tonight will be more quiet.
I'm running on empty today, having been awake from about 12:30 am to 5:15 am- possibly a personal record for middle of the night sleep disturbance. I managed to use the time well, writing, reading, and communing with Kitty as we listened to the gnawing together.
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.
I've been awake for a little while and am hoping to go back to sleep soon- a good idea since it's the middle of the night and tomorrow is going to be a long, busy day of cooking, followed by visiting with family, followed by another round of cooking and visiting with family on Friday. This would be a lot more fun if I'd just been lounging around saving up my energy all week and doing little bits at the time to get everything organized but this is not the case.
I woke up around 1am and by 2:30 realized that it might be a better idea to get up and do a few things rather than lying in bed ruminating about pumpkin pie ingredients, whether I should make a pie with gluten-free crust as well as the one with a regular wheat crust that I'm making, and if so, how? Having determined that I seem to have everything I need to make the pies (as I thought I did, I just wasn't sure) maybe now I can go back to sleep. Wish me luck!