Despite the news of my "suspicious cancer," the rest of our week in Colorado was amazing. We got a lot of snow, creating a gorgeous snowy mountain backdrop for the start of our marriage. There was so much happiness between my sweetie and me as we joined together in a wedded bliss. It was such a beautiful memory, and I am forever grateful for that!
Coming back home was hard, as reality does bite. I knew I had to deal with coordinating my medical care-- getting all those tests scheduled. I remember back then when I had endometrial cancer: I was working full time and in a doctorate program as well. I had to take a leave in between my completed doctoral coursework and my dissertation because coordinating medical care, plus going to all those appointments, felt too much for me to fully focus on my dissertation work. When I was done with all that, I was excited to go back to campus to get rolling. One of the faculty members in the program commented that she was happy to see that I was "finally motivated again" to work on the dissertation. Ouch. I did not "stop being motivated." No... this nerd loves to be NERDING continually! It just was not possible for me to juggle the dissertation work with all the stuff that came with being a cancer patient. I hope this story serves as a reminder to my audience of how much work it is to handle all that. It's not as simple as scheduling a regular medical appointment and showing up. It takes a lot more than that.
The challenges of coordination so far:
- The medical system does not have a streamlined communication across departments leaving the patients to work hard in digging up information. Unfortunately, some patients just give up because it's so frustrating.
- My urologist told me I had to call this number to schedule my biopsy. I called that number, only to be told that it was the wrong number. I was told to call another number. The second number said it was not the right number and then gave me a different number. The third number was the lucky charm, but they wanted to wait until I called before determining whether it was medically necessary. They did not start the review process after receiving the order from the urologist I waited a day for them to get that.
- My urologist said I cannot fly for 1-2 weeks following the biopsy but when I spoke with the interventional radiology team, they said I can indeed fly the next day or two. I just cannot lift heavy things for a week. I had thought I had to wait until the end of June. The sooner the better-- we will know more details about this kidney tumor and develop a treatment plan. I scheduled the biopsy for this coming Monday. I had mentally prepared myself for the biopsy to happen later in June based on the initial information I got, but now I am increasingly nervous because Monday feels way too soon. I had to schedule pre-biopsy labs for today, throwing a wrench in my schedule.
- As a deaf person, I have to deal with access issues. At my first appointment with the urologist, I missed some information because the sign language interpreter was not qualified. I had to read the clinical notes from my doctor in MyChart to get the whole picture. This morning, I emailed the iNova's Language Accessibility office and instructed them not to send me that particular interpreter again and to request credentialed interpreters. Unfortunately, some interpreting referral agencies try to earn a higher profit margin by sending non-certified interpreters. Medical interpreting is a high-stakes type of work, and medical systems need to avoid contracting with agencies that have lower rates because it's cheaper. It just means getting cheaper interpreters who are not qualified to do medical interpreting.
