Finally, since yesterday it seems my surgery pain has mostly gone away- other than first thing in the morning. However, I have terrible nerve pain. I expected it in my arm down to my elbow, but I also seem to have it in this spot under my armpit. There is a weird extra bit of skin/fat/something? there- I don't know what it is but it doesn't look normal- though admittedly, NOTHING on me looks normal these days..... So the elastic on the bras that the hospital gave me rub and make the nerve pain worse. I bought a sports bra that zips, but lucky me- it pushes against my port- so I can't wear that. If I go braless my skin touches itself. Sure, this doesn't sound bad but it IS. the part of my arm with nerve pain touches the part of my underarm with nerve pain and it makes me want to just crawl out of my skin.
Then there is the bra issue. I got dressed today and found a stretchy t-shirt that is soft and comfy. but I couldn't wear it without my foob (fake boob) so that brings in the issue of the evil foob. Evil fucking foob, I tell ya! I have to get the stuffing 'just right' so that it about matches my other side, then I have to wad it up and stuff it in a hole that is in my bra. Well, this messes up the stuffing and makes it look all sorts of wrong. And it can't be just put in. It has a top and a bottom and a inside and an outside.....After redressing myself about 12 times this morning, I ended up throwing a mini tantrum, but finally got it right. phew!
And this was all just so that I could go to my ocology appt.
That has it's own story. The onc is wonderful- I love her. She said she would rx me something for the nerve pain, and something for mouth sores- I get them sometimes and they get worse with chemo AND you cant get a new dose of chemo if you have mouth sores.... Well, she sent in the rx for the mouthwash stuff but forgot the nerve stuff- I will have to get that taken care of tomorrow. I am still eligible for the Aphinity trial so I am excited about that. We talked more about my pathology report- and in addition to the 3 positive nodes, I also had a vascular invasion- which means that it got into at least some of my bloodstream. Between the nodes and the vascular invasion- that really does raise the possibility of it having spread elsewhere.
I need to have a PET scan, a bone scan, and an EKG before chemo. These will be scheduled in the next couple of weeks. Not sure yet if I will do chemo on Mondays or Wednesdays- I think wednesdays will be better because the kids are less likely to be out of school for various holidays, and I am also thinking I will still feel well enough on fridays of my chemo week to have Sloane home with me and take her to dance class because she desperately wants to go to dance class. The woman doing scheduling was kind of a bitch. She didn't really listen to me and scheduled all my stuff on friday. This is the ONLY day I can really not do 'stuff' like that. And I am pretty sure she scheduled my first chemo day on a friday- even the doctor said we can't do that on a friday because I need to come back in the following day for an additional injection.....bah! More crap that I need to fix tomorrow!
During this appt, I also needed bloodwork. Well, since I had my port in- I asked to just have it taken from there ( I was excited about this!) Well, that meant that I couldn't go to the regular lab- I had to go up to the chemo room. Uh- sort of glad because I wanted to see what it was like in there, but sort of scared too. As soon as I walked in I wanted to run out as fast as I could. There was a busy nurses station and then a lot of chairs. Chairs with sick people in them. They weren't 'just' bald. They looked like they were dying. Jim did point out that most of them *were* kinda old, which is true but it did not leave a good first impression. I just sat there looking around- I guess there were some trees to look at out the windows, but other than that it was really pretty bleak- people staring that the people sitting across from them. And I will get to spend HOURS there :( Oh- and cel phone reception is TERRIBLE there! So anyway- I lean over to Jim and whisper 'I don't like it in here' and he whispered back 'I don't blame you!' Finally the nurse came to take my blood. SUPER easy! I loved that I had my port. I think she took 6 vials and it was like nothing happened at all.
On the way home the reality of being 'sick' and starting chemo really started to hit. I really have been trying to stay positive about it all and play it off like it's not that big of a deal. Not today. Today I am not looking forward to the rest of my treatment. I do not ever want to go back to that room, and get hooked up to the poison that makes those people look so aweful and sickly. I do not want that to be me. damn it, damn it, damn it, why does it have to be me?????
Looks like I will be going back to 'that room' to start chemo about the first week of september.
Hopefully the nerve issues will start to resolve themselves as you "get used" to them. If not, make sure you keep the dr. informed! Eventually you'll have a routine worked out about getting dressed - it's just figuring out the best way to go can be hard, especially when you don't have someone to help.
ReplyDeleteI got a lot of reading done during chemo! Some people brought laptops with movies on them. (My onco. had free wifi, too.) Napping is also an option (which will be easier to do as the chemo goes on). I had a bag of stuff that I always took to the chemo sessions, all packed and ready to go. It had a lap blanket and a pillow, books to read, a water bottle, and snacks. Take whatever you need to make you feel comfortable.
Chemo does make you look sick and tired (because you are). I think that's what bothered my kids (in their 20s) the most. {{hugs}}
That sounds like a big bag Jean! I am definitely going to make sure the Dr does something to help the nerve pain asap!
ReplyDelete((( hugs )))
ReplyDelete