Still Here

It was almost three years ago when I last wrote a blog post about my brain tumor "BKP" and the roller coaster ride it took me on. I stopped somewhat abruptly as I was back at work and almost immediately too busy to devote the time to doing it properly. Everything in the last three years had been fairly smooth, health-wise. Radiation had some frustrating side effects - around 6 months of feeling way more tired than I ever had, plus some very strange headaches around 16-18 months after radiation completed (apparently a common issue).

In early June 2018 I began experiencing double vision for the first time since late 2015 when I was first diagnosed with the tumor. This was very frightening at first - one of my key original symptoms had returned which must have meant the tumor was back. At one point the paranoia overwhelmed me - I went to the emergency room. A week or so later I finally had an MRI which showed no tumor growth. Phew. I sent the MRI results to Duke.

When I was actively posting here a few years ago I'd written about an Arcade Fire lyric which was resonating with me at the time... "Can you understand? | Why I want a daughter while I'm still young | I wanna hold her hand | And show her some beauty | Before this damage is done."
On July 8th Quinn Edith Rehm was born. She is everything. I've written repeatedly on social media tying in the miracle of her existence in the scope of the health problems Devin and I had experienced.

Getting ready for her arrival I had an appointment with my GP for a TDAP shot shortly after the MRI. She put me in touch with an eye doctor. Eventually this doctor referred me to another more specialized doctor and this doctor referred me to yet another more specialized. The last of these eventually got me on the calendar for a corrective surgery. At this point I was very far removed from the team of doctors who had been treating the tumor and this felt strange. The conclusive MRI from June had been giving me the confidence to push forward with this track - the double vision had to have been caused by my tumor treatment but the tumor itself was quite small and had not changed. My frustration over wearing an eye patch every day also kept me pushing forward on this path.

Near the end of my time at Duke in 2016 they had referred me to an Atlanta-based neuro-ophthalmologist who I'd seen 3-4 times that year to monitor my vision in the aftermath of the tumor resection and radiation. My vision was good and eventually I'd stopped scheduling appointments with her. With the vision-related surgery looming I scheduled an appointment with her for a second opinion of sorts. She wanted an MRI so we could get to real source of the issue. I was somewhat opposed to this - I'd had the MRI in June and my symptoms had not changed and MRIs are extremely expensive. Because of the presence of my programmable shunt installed by my Kennestone neurosurgeon Dr. Benedict, I have to follow every MRI with a shunt check-up as the magnets in an MRI always change the settings. This is not physically uncomfortable in any way but it makes MRIs extra difficult for me to coordinate. This MRI occurred last week.

Dr. Benedict himself reprogrammed my shunt this time. He had not ordered the MRI but knowing I'd had one in the same building he pulled it up and began comparing to past MRIs. He wanted Duke to take a look. I quickly made sure they were sent a copy of the scans. My Duke oncologist later told me that she'd actually received my scans while heading to a weekly tumor board meeting in which they review tumors to collectively discuss and make plans. She showed my new scans to the board. She sent them to Superneurosurgeon(tm). Thoroughly vetted, she called me.

"Your tumor is recurrent" was somehow as hard or harder to hear than the initial diagnosis in late 2015. I was naive in November 2015 - I didn't know what I didn't know. In 2019 I'm practically an expert. This is very bad. It is more or less the same size it was when I was first diagnosed, with some tissue not necessarily being tumor, but dead cells from radiation.

They want me to come to Duke to discuss new treatment options. We're leaving Monday afternoon. The have already told me there are two treatment 'tracks' in play: another brain surgery at Duke (via Superneurosurgeon) to remove part of the tumor followed by chemotherapy OR chemotherapy alone. There are different types of chemo so I quickly verified that this is the same chemo one commonly sees where vomiting and hairloss are common. Devastating. I am writing this in a state of devastation.

There is a lot I do not know at this point. I do not know whether this means the grade of the tumor is different (the scale of benign to malignant), I do not know why this is happening or what I can change so it freaking stops happening, I do not know whether I will miss a substantial amount of work (whether I can continue to work during treatments), I do not know what this will cost us or how we would handle that if insurance does not cover it all (in fairness I think it probably will), I do not know why my symptoms are the same as they were nine months ago or why the prior MRI did not show this, I do not know what this will do to my life expectancy, I do not know whether it's technically even the same tumor. I have a long list of questions for my Duke doctors and if you are reading this before Tuesday 3/12/19 then I welcome and encourage you to send me anything you would ask them if you were in my position.

I know I do not want to go through chemo. I know I do not want to put my family through more of this. I know I will never be completely rid of it. I also know I will do whatever I have to do in order to be here for Quinn and Devin and maybe nothing else matters.

My anxiety has limited my ability to see a humorous side of this, the side which I've otherwise shared on this blog. I'm tempted to elaborate on all of the thoughts which have crossed my mind since hearing of this but I don't know whether I can. That said, I do not want to end on a drab note so I will share this photo which shows exactly how I will look after chemo hair loss but before my vision is corrected:

 

Prayers and well wishes are most appreciated right now. I will write an update once I have met with the Duke team and have the mental energy to do so.