Lymphodema

It's spelled lymphoedema, but it's pronounced lymphodema, I have no idea what that 'e' is doing there. My spell check doesn't like either version so I will have to deal with that little red line that insists on underling that word no matter what I do.

I have it.

Lymphoedema that is.

Look it up and you'll see that pain is not listed in the symptoms. This is significant because I wasn't sure if that is what it was, but I suspected as much. Because I have pain, in my left arm, and lots of it.

So, I call my oncologist. Oh wait, I forgot to tell you. I have a new oncologist because I have new insurance. Kaiser. (is that groaning I hear?) No really, I've been super impressed with them. Up till now.

The receptionist said she can't get me in for another 2 weeks. I say, I'm in a lot of pain and I'm worried. She says, I'll get the nurse to talk to you.

So the nurse calls me. Now this is funny, she asks me if I'm sitting down. '

me: yes
her: Do you feel you can stand up?
me: yes
her: ok now I can't see you so I want you to stand, are you standing?
me: yes
her: ok now I want you to walk around a little, do you feel like you can do that?
me: yes
her: are you walking?
me: yes
(May I remind you that I called because my arm hurts and I think I may have lymphoedema)
Her: I'll call the breast care nurse and have her call you.

The breast care nurse calls, yes, lymphoedema does usually start with pain, she says. There are things we can do, like fit you for a sleeve and possibly physical therapy. She will call me back to make an appointment.

Instead my GP, who is adorable and I love her calls me. Or rather her receptionist calls me and I make an appointment for 9:30 am the next day.

I see my adorable GP and she asks a bunch of questions. At one point she leaves the room to 'check' something. She comes back with some new information about lymphoedema. She 'thinks' I'll be ok until my oncologist can see me at my regularly scheduled visit, the end of next month. 5/6 weeks from now. I ask a few 'I'm concerned, how bad will it get, should I go to the emergency room when it's looks like an elephant truck or what?' She lets me know that she doesn't really know all that much about lymphoedema, it's not her area of expertise. But she looked it up (thus the leaving of the room bit) and I 'should' be ok. She took measurements of my arm, it does not appear swollen, she says. Also you didn't have 'that' many lymph nodes removed.

I say, I know it doesn't 'appear' swollen but I can't wear my watch, everything (including clothing) that touches my arm leaves an indentation and the pain is phenomenal. Also I had over 1/2 my lymph nodes removed. I think that's a lot.

She says, try to keep it elevated and have some vicodin for the pain.

ah huh

So I wait. I sleep with pillows propping my arm up. This also keeps me from rolling on my left side. Which I should never do again, which I have been doing because I move alot when I sleep. I take the vicodin when it's clear the pain will keep me from sleeping.

The next day the breast nurse calls me. Yes, her name is Heidi and she calls herself the breast nurse.

Oh I have a funny story. My old oncologist was a sweet old man. We didn't see him one week so the following week we asked him where he was. He said, 'Oh yeah, I had a big breast convention to go to.' BH not skipping a beat said, 'Oh yeah? A BIG BREAST convention, as oppose to a little breast convention?" We all got quite a chuckle out of that.

You had to be there, it was funnier in person.

Ok so back to Heidi the breast nurse. Heidi says, I understand that you saw your GP, you should have seen your oncologist or your surgeon.

I says, yes I thought so too which is why I called my oncologist first.

She says, well you need to see the surgeon, he'll send you to the physical therapist where they'll fit you for a sleeve and yada yada yada.

I says, look, I'm new to Kaiser so I thought my GP was the one that was going to set up those appointments. I don't want to see another handful of doctors that aren't going to do anything for me. I'd just rather wait to see my onc in 6 weeks.

Heidi, the breast nurse says, I understand, let me see what I can do.

She calls back and says that the physical therapy office will call me for an appointment.

They should call next week sometime. Ifin I don't hear from them in a week, call her back. She gave me her private line. (when I called it back there was an answering machine, so it really is private, she didn't call me back)

Other then that, I'm fine.

Oh hey we saw 'The Brave One' last night, good movie, a little long and slow in parts, but good, it was good, go see it.

And in other news, I'm moving. I'm not sure if that's good news or bad news. More on that later.