My Rads Consult/Simulation

Yesterday I had my consult with my RO and simulation. I learned - and Idk if this is normal, but it totally freaked me out - that they will be radiating lymph nodes in my chest and clavicle. I immediately start asking questions about the likelihood of truncal lymphedema. Lymphedema - permanent, all the time, chronic bullshit, not just, oh you might have some swelling during radiation, like the way they were trying to pass it off. I'm sorry, I'm a lawyer, and when I want to have a discussion, the discussion is getting steered. Let me ask the question again. But even now, I realize I didn't pin her down clearly on truncal lymphedema stuff because I wasn't prepared at all on that issue.

Come to find out, at the top cancer hospital in the country my RO hasn't had a patient who has come into rads with active LE.

My consent form described a potential side effect of radiation to be "arm swelling." I said, "Do you mean lymphedema here? Because lymphedema is not arm swelling. Lymphedema is a lifelong, chronic disease." She said yes, they were referring to lymphedema in the term arm swelling. I almost fell out of my freaking chair.

No one told me - and the hospital has a way to communicate how to prepare for procedures - to bring a camisole, or something to protect my sweater and my bra - from being damaged by the ink they were going to draw on me with until I got there. To top it all off, a ton of it was covered up with this tape, which immediately caused a skin reaction. Oh, I was sent home with markers and told to redraw it on myself. I took my shirt off last night and nearly passed out because I looked like a battle plan. I started ripping off all the tape. I wouldn't have been able to put lotion on because of all that tape crap. But then I read the information the nurse was supposed to have gone through thoroughly with me, and it said not to remove the tape because it might remove some skin with it. But I was supposed to keep moisturizing. But you've covered the entire area with this weird tape. I'm practically hyperventilating right now.

It's like every body image issue nightmare that I've been trying to deal with came rushing back all at once together. I am even MORE afraid now that after rads I'm going to wind up a scarred - and now she helped think of new ways, lymphedema - now not just in my arm, but EVERYWHERE - alien freak show.

I can opt out of radiating lymph node areas. Of course, I have to make the decision on my own, try to educate myself the best way I can and hope against hope that if I decide something against what the doctor says that I've done the right thing.

I used to think I was a strong person with a great attitude. Maybe I was. I hate letting something beat me, but I'm getting really close.