Posts

“Hope is the pillar that holds up the world.”

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...
2 comments
Read more

quantum flux

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...
1 comment
Read more

A surreal 12 days

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 ...
Post a Comment
Read more

"you cannot protect yourself from sadness without protecting yourself from happiness"

On the day before, I read a Billy Collins book, and for a few hours everything was beautiful. But then, you had a seizure, and that was not beautiful. The next night, I couldn’t sleep, even though I was spent. I placed my hand on your head as you dreamt, palm above the tumor, and paced through five stages of grief. Now, there is still beauty: a burning blue sky, the cut of a blackbird wing across the sun. But I can't stop thinking about the cancer, and how I don’t know when it will wake, and pull you under. but then,  I guess, no one ever does. ----------------- I still have a bandaid on my leg that I put on before the cancer diagnosis. It was that recent. Not that I haven't showered since then, but I guess bandaid technology has reached an apex. I was shaving, using a relatively new Venus razor but one that recently fell apart a little, and nicked my skin. Not a big deal. But it feels like a different person put on that bandaid, in a different life.  One thing many people no ...
3 comments
Read more