Success! I received a phone call and my neuro-oncologist will meet with us one hour after the previously scheduled, then cancelled, appointment. I feel guilty for having to be so straight forward and direct. It's frustrating to feel guilty about wanting an appointment with my oncologist. I don't enjoy being forceful. A girlfriend who is also dealing with brain cancer gave me solace though. She said that she's never been bumped by her doctor, that at each MRI review she's met with her doctor - not the doctor's nurse (different hospital). And that she would be upset if she was in my position.
I've been bumped at least three times that I can remember. The most memorable was in October. We met with my radiation oncologist's nurse, she reviewed my MRI and said that the tumor looked great, that she wasn't sure if there was any new growth or not - there was an area of concern, but it could be the positioning of my head during the scan. The nurse said that my oncologist would call the following week with the final results. Unsatisfied, my mom pressed on and said, "Is there any way to meet with the doctor?" That's when we headed over to Harborview's Gamma Knife Center, intent on sitting in my radiation oncologist's office until he would meet with us and answer our questions. It turns out that there was significant growth, and when we met with my radiation oncologist, he wanted me to immediately start radiation, the very next week. If we wouldn't have pressed on, and would have instead gone home after the appointment with the nurse, my family would have gone back to Wenatchee, Danny would have been back to work, and I would have been at home when I received the phone call with the horrible news that they wanted me to start radiation. That's not something you should have to hear over the phone. It was a massive eye opening experience, reminding me that I have to stay on top of my care. I'm lucky to have a team, my husband and family, and there's definitely strength in numbers. Follow your gut, and don't be afraid to voice concerns. It's sad that you have to stand up for yourself, but it's the medical world that world we live in.
Either the University of Washington's neuro-oncology department is understaffed, overwhelmed, masters of double billing, are out of touch with their patients and their feelings or maybe they just don't take cancer very seriously (which I doubt). Maybe it's a little bit of all of the above. Oh well. It must be irritating for some of the nurses and doctors, I don't believe that they're heartless, but there's a bottom dollar and currently my hospital has a bad system, that's for sure.
On another note, here's a new recipe that I made us for dinner!
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| Dinner |
Lacino Kale Salad
10 large kale leaves, thickly shredded
1 cherry pepper finely diced (you can chop a few of the seed to add some spice)
pine nuts to taste
romano sheep cheese to taste (I zested ours, but you could grate, or it however you want)
Toss the above ingredients (except for the cheese) with a mix of olive and sesame oil, the juice of one squeezed lime, and fresh cracked pepper. Dish up, and zest some romano on top.
On a side note, has anyone else ever noticed that lacino always has a bunch of little bugs in it. They're like little aphids or something. I wash each leaf by hand, pulling the little bugs off, but it's gross. I don't think I can continue to eat it. Any suggestions before I complete give up?
