Wednesday 6/5. Shopping for cancer treatment

 Good morning all. First please send a bit of good wishes and positive energy to my Robbie who is having his lymph node removed. Jet took him. 

Ok. So yesterday absolutely sucked for so many reasons. First off one of the things that we were waiting to find out about the tumor is if it was or is methylated or un methylated, I know! who heard of this shit but anyway it’s unmethylated which is the bad one of course so it’s more resistant to radiation and chemo. I knew from the start that chances were better than not that that was going to be the result of the testing. It’s pretty common with brain cancer so it wasn’t. I wasn’t shocked. I was just kind of disappointing to hear it so that sucked.  Let me paint you a picture of the office yesterday. The most lavish, over the top, excessive , in your face expensively decorated, and it really just felt like they were showing off  it felt like walking through a museum more than a medical facility and it was so offputting and it was like the first time I realized that this is like big business I don’t know it was. It was very weird. And it made me feel really sad I was in the room with Jet and Robbie. Addie was zooming in the doctor came in and his two female assistants who kind of looked more like they should be working at Roosevelt Field mall then a doctor office. I doubt they were nurses. I don’t know what their role was but I do know the whole vibe felt very rehearsed.   There was nothing natural or comforting. It was like they were reading from a script. It was eye-opening.  So the doctor started talking about the clinical trial that he’s involved with gave me a lot of information about it which of course you know with my mind being so cloudy thank God for my family and when he’s talking about his clinical trial, it’s not really like a lot of information because so many of these clinical trials I’m learning or you know Stages first stage second stage stage you know who’s eligible who can get in who can’t get in but make decisions because there’s not a lot of clinical trials for everybody. I was not digging the doctor and I could tell that wasn’t either and the whole approach was like going to the mall to buy a pair of shoes and a pair of shoes like at one point the doctor said I remember if it was the doctor that said it or one of his assistance something like you know you have to do your homework , don’t let the Internet make you crazy with what you read and you don’t have to pick my clinical trial I won’t be insulted !  Seriously? Is that what you think I’m thinking about right now insulting you by not picking you a clinical trial? So they gave us a folder with all the information on this particular trial there’s not a lot of people in the country and it may be like a dozen. I think he sees maybe two the success rate is not great but that’s with a lot of these trials I mean, that’s why the trials we don’t know yet I thank God that they are available because they are options, but there’s a lot of research and legwork to be done to try to figure out what the best one might be for me. There was also kind of a little shift in pressure also as we’re talking about his clinical trial, there was mentioned a couple of times by him about I have a little bit of time because they’re not gonna start anything for a week or so cause I’m still healing from the surgery But if I make my decision too late, I might not be able to get into clinical trial   So he sent everything home with us and we scanned everything. Addie sent it to Sloan yesterday so I’m waiting to hear from them today and hopefully get an appointment soon. See what they have to say and offer over there. In the meantime we’re looking at some other clinical trials stuff, I should also be hearing from the radiologist today. I have to go see him and just get it all figured out.   Before I left they wanted to draw blood. So they brought me to this fancy room, sat me down and asked me if I knew if they wanted to use the regular blood tubes or did I have  any they gave me. This is the first time I’m at this doctors office clearly they spent billions of dollars on this place and the girl, drawing the blood behaves more like somebody working the make up counter at Bloomingdale’s then a doctors office it was so bizarre  I have to say for the first time I felt like I was not in good hands and it made me feel really scared . Sad pissed, and just fucking annoyed.  No one working there behaved organically it was like everybody was super trained on what they said how they acted. It was very cold. I don’t like people like that.  So the take away yesterday cancer cancer study these doctors these clinical trials it’s all big base big business and it’s all about money.   And who has the most and the fanciest office. How about use some of that money and hire some people that are real and compassionate. People that actually care. I don’t need some generic assistant dressed to impress handing me a tissu telling me she’s here for me especially because I am so nice!  What the actual fuck!!

The surgeon is in the same office so I’ll be going back there on the 27th but hopefully by then I will have enough information for an alternate game plan. Maybe Sloan. Let’s see.