|Lucy, my nap buddy|
In my previous blog you saw pictures of my radiation burns. I discussed the lack of support I received during treatment and the inability for my nurse to do anything helpful. Google and blogs were my radiation oncologist, the things that people posted and discussed probably saved my skin (TBD) and my sanity (also to be determined). Even when I asked the nurse about things I read to use, she diverted the question. I had Aquaphor suggested by her, and if I wasn't going to use silvadene there was no other words of wisdom spouting out of her mouth. I am honestly surprised she can tie her shoes......come to think of it, I think they were Velcro. awesome.
So here I am, a few weeks out of treatment and sloughing off skin like you would not believe. I am using Domeboro soaks (which are amazing and found at any pharmacy), Cool Magic Gel Pads which are little miracles (bought online at www.mpmmedicalinc.com). They are expensive as hell, insurance doesn't cover them, but I would sell my house to keep these little pads of healing on my boob. They keep it cool, they suck out all the liquid that is leaving the open wounds, and they are breathable. AMAZING. My face has been super dry since I started using them, and I am convinced that they are so good at what they do, they are sucking the moisture out of my face. I went a day without them, because the new ones we ordered had yet to come in the mail, I was full of tears and pain medication. I could barely move, and sleep was out of the question. I am also using the prescription antibiotic ointment that I got from my dermatologist (obviously not from my radiation team because silvadene is their god). I think I am healing, at least mentally, while my boob is doing its own thing, slowly but surely.
A week ago today I went in for a "skin check" with my radiation oncologist. Lucky me, I got stuck with Velcro shoes, and I knew I was in for a rough ride. Scott came with me, because I have had progressively violent dreams of slapping someone with a Cool Magic Gel Pad, so he is keeping me on a short leash--plus, I can yell, loud........and there was a time (in my youth....) I could make people cry pretty easily. I was rotten, and she brings it back out in me...the frustration builds until it is seeping out of my eyeballs, my mouth, you name it and I just can't hold it in. (I don't want you thinking I need anger management, in fact I use to teach it to people, so I have the tools, but now I feel more relatable to the chair smashers).
The first thing she said was "oh wow, I can tell it looks terrible from here" (as I pull off the mepilex covering) and once I removed the bandage she said "yeah...this is were we would use silvadene" (I swear, I can't make this shit up). I showed her the antibiotic cream I was prescribed and that was it. I told her I needed more pain medication, but to my surprise I wasn't seeing the doctor--in fact he wasn't even there. So I went in for a "skin check" with a nurse who doesn't know what she is doing and she told me it looks bad and pulled the silvadene card, she didn't even write down what it looked like, or anything else I said other than the name of the antibiotic ointment..........I should have just lifted up my shirt at Fred Meyer and got a consensus about what they thought (things like this are why I am on a short leash, I get it). Unimpressed, I asked her how I would go about getting the meds, she said Scott and I should go to a late lunch and then she would call me. fuck.
So we went to lunch and I got a call (about 30 minutes later; total appointment time 1 hour 15 minutes) the first thing she said was "we have never written a pain mediation prescription for you here, you must have gotten it elsewhere" FUCK. I informed her she was wrong (I have gotten 2 there) and it is probably not in my chart because they never write anything down! She said she would try and figure it out. Scott and I headed to the house to pick up the prescription bottle I have that was written by my doctor and on our way to the office she called again "turns out all I needed was the name of your pharmacy" (I gave it to her in the first conversation). FUCK. (appointment time: 1 hour and 45 minutes). Scott went in to pick it up because we were both certain I would try to give her a very large papercut. I looked at the prescription, it was wrong. FUCK FUCK FUCK. really?!? I am just saying that I probably could have bought some off the street in 5 minutes! (not that I would do that, but it definitely crossed my mind a few times). I stomped in and asked to speak with the nurse, she doddled out and I told her it was wrong, she looked at it, asked to see the previous prescription bottle (thank god I grabbed it) and went back to the doctor. So then I got a prescription for 10mg tables, instead of 5mg........so the fact that I am trying to taper down seems to have bypassed her. I had to buy a pill cutter and am cutting teeny-tiny pills in half (losing most in crumbs).
She also told me that I had to come back Thursday, a few days from then, to see my doctor. I thought that was what I was doing at the appointment in the first place....wow. I made an appointment, while that was going on the nurse was very heavily implying that I was either abusing the drug, or selling it (fyi I am not). I am not underplaying prescription drug addiction by any means, it is a very serious concern, especially with young people. But when I have by entire boob skin peeling off, and have no other form of pain relief, I will bite off your finger for a pain pill. Without taking the pills I can not get out of the bed in the morning without Scott's help. I cry and can't move my right arm, I can't type, I can't wear a fucking shirt. I have taken pain medication many times throughout my cancer journey, and there was one point where they wouldn't even work, I was in so much pain. I feel that it is important for that to be recognized, I just highly doubt many cancer patients end up getting hooked or are selling them after their radiation or chemo appointments................come on. I was highly offended, talk about holding back a punch. I was really close to loudly whispering to Scott "these will get us $25 on the street".
I made the fucking appointment (after my 2 hour and 30 minute appointment). Two days later, I canceled it. I refuse to go back there for care. My blood pressure rises just thinking about it, I honestly (other than the radiation itself) have received no help or support. Scott can be my doctor, I may try the Fred Meyer poll, and Google is my nurse. I am planning to have my medical oncologist check my burn instead. I also have a great primary care doc and wonderful plastic surgeon. I called and told the radiation office I would be taking my follow-up care elsewhere, I also left a message on the nurse-line, that I would not be seeing them for follow-up care, and I planned to write letters to the administration and do everything in my power to let people know not to receive treatment there. It just reminds me that others don't have the support I do, I am so lucky to have people in my life that value my health and care and recognize my need for change.
So I am a rogue radiation patient, healing my way.