On Tuesday I headed up to the Portland VA for my first appointment and consult with my cancer team (I need to keep using and saying the word cancer to make it real). I stopped along the way and got coffee and mojito gummies. I had no idea those were a thing but thanks to Starbucks, I now know that they are and my life is so much more glorious for it. The Portland VA is on the same campus as OHSU and Doernbecker’s Children’s Hospital on top of a hill surrounded by trees and hiking trails and has an amazing view of Mt. Hood over the river. If I could convince them to do my surgery outside, I would but I can see my doctor’s face now. The parking situation left a lot to be desired but it gave me the chance to see all the old vets sitting in a glassed in room smoking. I sure hope they vent that adequately. Anyway, I digress.
The first person I met was Heidi, my cancer nurse advocate. She met me in the waiting room to accompany me on my appointment and answer any questions I might have. We did a brief intake (“Hello, my name is Michelle, I’m 41, I have cancer.””Hello Michelle, my name is Heidi, I’m your person throughout this whole thing.” “Hi, Heidi.) She was wearing a Wonder Woman lanyard and that made me happy. Even my person is on my team. Next, I met my doctor, Dr. Kwong. All I can say is that I really liked her. I really like Heidi too and Christie, Dr. Kwong’s RN. Dr. Kwong was competent, compassionate, knowledgeable and gave me lots and lots of information and options. I never felt like she was pushing one thing over another. It was completely up to me. She was there to make sure I made the best decision based on current facts. I super appreciated that. She drew me a fabulous diagram of the options with lots of pictures. I asked to keep it. It will now go in my unicorn scrapbook. Oh, about the unicorn thing.
Dr. Kwong told me that because of all my factors (young, no close family history, super good health) I was what they referred to as a unicorn. I like that and am accepting that as my own. She also went through the entire pathology report explaining all the things. We did discover that I was mistaken when I thought I was ERPR negative. I am actually positive which is good because that opens up some treatment options and also makes it less likely I have the BRCA1/2 gene mutation that will make it likely I will get breast cancers and ovarian cancers numerous times throughout my life. Yeah, no thanks.
The appointment was full of a lot of laughs because life is too serious and if you can’t have a good time while fighting a deadly disease than why bother? We talked about and are moving forward with a lumpectomy while at the same time arranging for the BRCA genetic testing. Dr. Kwong described the whole surgery and what happens at it. Her doing a lot of pathology and running back and forth testing tissues. Me doing a lot of sleeping. I think I get the better deal here. Prior to the surgery, OHSU will put nuclear dye and some bluing in the nipple. Hence I am a radioactive unicorn. At least I will be after the surgery, but I’m practicing now. I couldn’t help thinking of the fembots in Austin Powers. Yep, I’ll have superhero powers yet.
A lot is still up in the air. The genetic testing takes about 30 days to get done and then about 2 weeks for results. If that comes back positive, I will be saying goodbye to several of my body parts. “It’s been a good run, but I’m not going to allow you to kill me. Sorry about that. Yes, I’m that fickle. I want new ones that aren’t homicidal.” If there is cancer spread either through the breast or into my sentinel nodes (that is really the coolest term ever and the physiology of the lymphs is my new favorite thing), then we will come up with a plan from there. After there might need to be radiation, hormone therapy, chemo, etc but we will cross that bridge when we get there. Apparently, there is an algorithm that the oncologist does that determines best next steps. It’s like a “Plan your own adventure”. I’m also looking into alternative/complementary treatments as I am really not interested in just going blindly into the conventional medicine ideology of “poison” it. I have no intention of letting the VA make me worse. So that’s the update for now. Oh, yeah, surgery is 8/3/2017. Pre-op testing next Friday 7/21.