Hello everyone! I hope you all enjoyed a happy Fourth of July! I spent the weekend at home. It was way too peopley out, and I still am dealing with swelling in my legs and feet that makes it hard to be out for long periods of time. I had an appointment with my oncologist on June 30. It was a little underwhelming to say the least. He said since the swelling in my face had went down that we were going to assume that the rest of my tumors were just melting away. My issue with this is that up until three weeks ago he didn't think there was any cancer in my face. I was first told it was lymphedema ( and then was sent to massage that swollen lymph node to drain into the rest of my lymph system!) and when that did not work I was told it was side effects from my immunotherapy. it wasn't until I got out of the hospital that he said oh that is definitely a swollen lymph node, and we will watch it to see how this new treatment is working. So, we are assuming that it was cancer in my face AND we are assuming that because that swelling has went down that the rest of my tumors are shrinking, too. Now to be fair, I did not expect him to schedule a scan 2 weeks after starting the new meds. I did, however, expect him to have some sort of plan of action. This man told me to "live my life" and that I would stay on these meds until they stopped working. Once they stopped working we would decide what to do next. Then he said to call them if anything changed and he would see me in a month. I DID ask for a brain scan. I told him that I had not had one in over a year and that while I did not think it was in my brain because I wasn't having symptoms that I wasn't having symptoms that it had came back until I was half dead, either. He gave me a referral for a brain MRI. That is scheduled for July 21 (first available). I scheduled an appointment with my PCP for July 1 to ask my PCP to send my records and a referral to UVA. My PCP refused. He told me to have my oncologist do it after my brain MRI at my next appointment. I don't want to wait that long for one, and I didn't want to ask my oncologist as I am afraid to make him mad. That said, I just emailed my oncologist and requested he send my records to UVA for a second opinion since UVA is listed as a melanoma specialist. I have also contacted MD Anderson ( who does not require a referral!) and am waiting to hear from them. I am going to see what kind of programs they offer for people who are out of state. I need a better plan than just "assuming" and "we will cross that bridge when we get there" and I don't know how to tell this oncologist that without pissing him off. Worst case scenario I will fire him and find someone closer to home (I drive an hour to see him). Other than that, things are going well. I went three full days between home health nurse visits which was good. They did get 900ml of  fluid off me this time, but they haad only been getting between 350-400ml when they were coming every 2 days. Also, I sat up this time so the fluid could reach the catheter instead of settling on the opposite side of my chest. Once I get to less than 50ml every 3 days (3 times in a row) then I can have this catheter removed. I have a ways to go BUT we are headed in the right direction. I want to thanks everyone who has reached out and messaged. You guys mean the world to me. Right now we are in kind of a holding pattern until I can get some concrete answers regarding this treatment and exact size and location of all my tumors. From what I am reading, malignant pleural effusion from melanoma is pretty rare (between 2-5% of cases) so I am hoping one of these research hospitals will be interested in my case. I did stop reading there, though, because the rest of the information just sucks and is outdated. Ha Ha Positive information only! Also, none of what I read mentioned any sort of treatment so I don't know how treatments would have effected those outcomes. I will ask that you guys keep me in your prayers, and keep sharing my Caring Bridge and GoFundMe pages. I hope everyone is happy and well! Love to all!!!