Tuesday, January 11, 2011

Normal is Relative

When the oncologist said I was "normal like everyone else", he forgot to remind me of a few little exceptions. One being that I still shouldn't be lifting anything very heavy with my left arm.

Sunday night my underarm started to feel puffy and uncomfortable but I didn't pay too much attention as that has happened occasionally and usually subsides within a day. But this time I was uncomfortable in the night and it was worse on Monday and tender into my chest. So between being really tired from not sleeping well and trying to keep my arm elevated (despite a still mostly frozen shoulder), I didn't do anything on Monday but recline on the sofa. No quilting ... no computering ... I just watched our great big tv. Despite that, my underarm was still puffy last night and again I didn't sleep well. By this afternoon, though, it's been subsiding and is now much less bothersome. What a relief. It's been a little demoralizing but my spirits are bouncing back already.

Puffiness in and around my arm makes me nervous because the threat of lymphedema still hangs over my head somewhat. Apparently between surgery and mostly from radiation, it can happen any time ... if it happens ... over the next 5 to 6 years. It seems there is still a lot to learn about the how or why of lymphedema, which is probably why the information about it is not very clear. There doesn't seem to be any way to determine who is at risk for it and who is not. Once recent study I read suggested it might be just the luck of the draw and which key lymph nodes get damaged or lost in surgery and/or radiation. Even if radiation totally zaps 6 lymph nodes, for example, maybe the key node or nodes necessary for draining fluid were spared and you won't get lympedema. But if one or more of those 6 were the main drainers, you will likely get lymphedema. The study suggested there might be some merit in adjusting or blocking the radiation beams (the same way they do for your heart) to prevent so much damage to lymph nodes.

What typically happens now is if you get lymphedema, you will be told that you should have done more to prevent it and yet there are not clear instructions on how to avoid it. And even for those who take precautions, they might get it anyway. And once you get it, there's no turning back from what I understand. It's kind of backwards the way they treat or don't treat lymphedema risk. One thing I've been reminded, though, is that I should NOT be lifting really heavy grocery bags! Not for several years yet.

The photo is of my fern in Movember.
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  1. I know what you mean about that. The lymphedema threat is always hanging overhead - I didn't even know that about the grocery bags and heavy things! I've been going to the gym quite regularly since I finished radiation and it has helped a lot. I almost have all the feeling back in my arm only 2 years after surgery which I think is amazing after talking to other people who told me it takes 10 years or more. (and you should see my pipes :) My radiation oncologist told me to keep it active and just live like I always did. It was good advice for me :)

  2. Oh yeah and for anyone who can't afford or can't get the energy for the gym at least do the exercises that you got from physio after your surgery (snow angel, push ups against the wall, using the stretchy band etc)

  3. Hey, Berny! It's interesting the different kinds of information we get from doctors ... or don't get. I never did get a sheet describing exercises. Last time I was at the radiation oncologist, he told me to keep up with the exercises on the sheet and I told him I never got one and I asked for a copy of it only to be told they didn't have any, which was perhaps the situation when I should have gotten one in the first place. At any rate, I had started doing stretching and then, lickity-split, I had those frozen shoulders which did in any stretching.

    Now, though, my shoulders are a bit better, especially my right one, and I've been using hand weights, too. I do feel stronger, though unlike you, I will not be boasting any time soon about my PIPES! I know now that I can lift a reasonable amount of weight without any arm trouble but any real strain on my left arm is just not a good idea. Not yet anyway and I won't be testing it again any time soon ... unless I forget.

    That's great that you have feeling back in your arm. I hope it continues to improve. I didn't lose much feeling there. I wish the feeling would come back in my toes and feet. I have my doubts now that it's been this long.

  4. My exercise sheet came from physio after my first surgery. Did our surgeon not send you for physio after surgery?? They are the ones that helped me a lot even with some lymphatic massage.

  5. Physio? Nope. Maybe because I only had a LUMPectomy and only lost a couple of nodes along with that. That lessens the risk of lymphedema considerably, though it's still possible. Most of my risk for lymphedema stems from the radiation, and it was only my radiation oncologist who talked to me about it and he didn't give me an "exercise sheet" at that time though he has since referred to such a document. WTF?!

    The only time my surgeon talked to my about lymphedema is when we were discussing the second surgery (the one I opted out of with this support). I would have had an increased risk of lymphedema after that surgery because I would have lost a lot more lymph nodes.

    No ... no physio for me.

  6. Maybe I did only have physio after the mastectomy and not after the lumpectomy like I thought. This brain still doesn't remember everything. I will copy the exercise sheet I have and give it to you along with the Norwex books...

  7. That would be great, Berny! Thanks! I look forward to receiving both.


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