Monday, March 1, 2010

Lymphedema? I Hope Not.

I'm still loving these drying tulips. They fascinate me every day!

Today is not an especially good day. As I said last Friday, I was feeling some trepidation about getting back on the medical system treadmill but was feeling it necessary because of the swelling and tenderness under my arm. It's no wonder I dread dealing with it. It's so absurd! I got a call this afternoon from the Champion Centre ... from a nurse ... and here's how the conversation kind of went ...
Heather: Yes, I have some swelling and tenderness under my arm that's been going on for a few weeks and it's been getting worse. In fact, today it's at its most painful.

Nurse: Where under your arm is it?

Heather: The lower part of my armpit, above where my 2 lymph nodes were removed. And there's now some tenderness to the touch in the front of my chest close to that armpit.

Nurse: It sounds like you have lymphedema. Have you seen your family doctor about it?

Heather: No, he isn't a specialist in cancer and cancer treatment so I thought the best place to start would be with the my radiation oncologist who last treated me and who warned about the possibility of lymphodema.

Nurse: I see you're supposed to see him at the end of April. I don't suppose you want to wait that long?

Heather: No, I think I should see someone as soon as possible.

Nurse: I'll talk to the doctor but I don't know if he'll see you. He might refer you directly to a physical therapist or occupational therapist and you'll need to be fitted for a compression sleeve.

Heather: Don't I need to see a doctor first so it can be determined if I do, in fact, have lymphedema? There's no noticeable swelling in the rest of my arm. Might it be cellulitis or even problems in my other lymph nodes?

Nurse: Lymphedema doesn't have to involve the whole arm. Is the skin reddish?

Heather: No, I don't think it's reddish, not last time I looked. But it's definitely sore today. [Meanwhile, my inside voice is saying, "if I was confident in my ability to diagnose myself, I wouldn't be calling you!"]

Nurse: I'll talk to the doctor and see what he says and then I'll get back to you.

Heather: When do you think that might be?

Nurse: [reluctant to commit, I think] I'll talk to him tomorrow morning and I'll call you.
ARRRGGHGHHHHH!! The literature about lymphedema stresses the importance of seeing a doctor IMMEDIATELY because there is no cure for lymphedema and it's best managed if caught early. It's so upsetting.

I then called my family doctor and made an appointment for tomorrow morning. I don't even know if I should be sitting upright at this point? Should I be lying down with my arm elevated? Should I be getting specialized massage immediately? Is there anything I can do at home to help? I just don't know. I just don't even know for sure that this is lymphedema.

It's so frustrating. I'm not happy today. And I really do hurt. It feels very much as thought the people at the Champion Centre just want everyone to be good little cancer patients, finish their treatments and then go away. Calling to say things aren't going 100%, one gets the impression that they really don't want to have to deal with you. They have other things to do now. They're done with you. Can't you talk to someone else about that? It's quite disheartening. Do they realize it's not how I want things to be either? I'm sure they do if they stop to think about it, but they're busy. Busy. Busy. And you're just another unwelcome thing that they want to avoid scheduling into an already overburdened schedule. That's my take on it anyway.

These tulips are pretty thought, aren't they? Pretty things help.


  1. Hi Heather,
    So frustrating. . . Good luck -- soon! And gosh - with that Chemo Brain (and you described it so well) - hope it continues to improves quickly - it's bad enough with just our normal aging process!! You're hair is definitely looking improved yet again. It'll be ready just in time for that old now-renewed beehive up-doo look.
    Hope Kevin had a good birthday. And thanks so much for sending him over while we were gone. (Just getting over a cold from that trip myself, but no broken bones.) While not on the slopes (and I took it VERY easy), we too were glued to the Olympics, and then all last week too - Just like most everyone it sounds. And what a GREAT ending with that last Gold!
    Glad to hear work is going well, albeit with tiring effects.

  2. Hi Laurel! That's so funny! That beehive up-do look? Do you think it's coming back again because of the popularity of the show, Mad Men? I can only HOPE for enough hair for a beehive! Not that I would know how to finangle my hair into one. I can't even use a blow dryer or a curling iron. Total hair klutz! Good thing I've always had curly hair that just kind of does it's own think, like it or not. I want it back!

    I'll bet you're in Olympic sport withdrawals, too! It as so great, wasn't it? A lot of emotional ups and downs. I love things like the Olympics that can remind us of the glory of sport and how good it's pursuit can be for both individuals and humans as a group.

    Welcome back! Glad you're all intact after your ski trip! If this weather continues, we'll be sitting around your fire pit lickity split!


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