Our cancer journey

Some good news today. First of all, the snails at the insurance company have approved the out-of-network exemption for the neuro-oncologist at Dana Farber, and now we are just waiting for insurance and DFCI to be on the same page so we can schedule the initial appointment. Second, Eric was able to get the fMRI scheduled for late-August, and then it got moved to 8/11. He saw the neurosurgeon on 8/12, who said that while some surgeons prefer to do the biopsy and resection in the same surgery, he prefers to do the biopsy stereotactically and then later do the surgery once the pathology/genetic results are back so he can be certain what he is resecting. I guess if it's a very slow-growing tumor, it won't make much difference, so we are trusting his expertise.  It was strange to hear that they would do a stereotactic surgery, because that is how I used to do surgeries on mice in graduate school. I was injecting microRNAs targeting the Huntingtin mRNA into mouse models of Huntingtons...

I have to keep reminding myself that cancer isn't like quantum science. It feels like before the biopsy and pathology, things are in a superposition. Schrodinger's cat is neither alive nor dead, but a waveform prior to collapse. It feels like if I don't know what kind of cancer it is, it could be anything. But that's not the reality. This isn't a quantum particle that will only fix once observed. These are macroscopic structures that are what they are. Nothing can make it different. The only thing that will change once we get the report is me.  I have no news otherwise, just frustration. It has been really hard getting things organized. Trying to get the insurance to pay for the neuro-oncologist. Trying to get the radiologists to get the fMRI scheduled. Every day we have been both been calling multiple people trying to get things moving. Eric has a neurosurgery appointment next Tuesday, then the fMRI 8/26. We are still waiting on the insurance approval for Dana Farb...

It has been 12 days since I was diagnosed with a brain tumor, and I finally feel ready to share a few things in writing. Be forewarned that this will not be anywhere near as beautiful or eloquent as Lindsay's previous post. It will be "word vomit", an effort to get my thoughts and feelings on the page in an effort to process and ponder them intentionally. As a planner/second-guesser/all-around anxious perfectionist, just writing what comes to mind with little editing has never come easy for me, so thank you for bearing with me. Over the past 12 days, I feel like I have experienced a lifetime of emotions. To be honest, when I had my seizure early last Tuesday morning, July 22, I initially felt a sense of relief. After all, I finally had an answer to why my scapula had mysteriously broken 3 months earlier. Maybe it was denial, maybe it was what we call "premature closure" in medicine, or maybe I was still experiencing some post-ictal confusion, but I just assumed ...