Imposter Syndrome

 

Artsy…

This is going to be long and terrible, so either save yourself now or strap in….

The last week has been extremely difficult. I lost another old friend, unexpectedly. I guess that’s not true. If I’m being totally honest, I WANT to say that she was an old friend, but the reality is that she was “just not that into me”. She (along with the rest of my friends group) was an incredibly important part of nearly every day of my life for a few years in my 20’s. 

I remember a “fringe” member of the group who everyone thought was extremely annoying. One day she commented to me that she knew how annoying she was, and I remember telling Debbie about it, and how I was sort of impressed that she was so self-aware, in spite of the fact that she continued to annoy the shit out of everyone. I am lucky to be one of those people who realizes how clueless something I’ve said or done is well after the fact, and then can’t stop knowing it for the rest of my life… That conversation always stuck with me because I eventually realized that I was the annoying person to most of our group, and I lacked self-awareness to such a degree that I shared that story with her 100% unironically.

It was a somewhat humiliating revelation, and I didn’t figure it out until I had been sort of phased out of the group. That was a very devastating time, and it is still hard at times to have a memory from back then without feeling pretty sad about it. I don’t know if it was always true that people were just tolerating me, or if they outgrew me, or grew tired of me, or if maybe it was just a small pool of people to hang out with in the first place, and once their worlds opened up they realized that other people were a better fit. I was far from a perfect friend, and these things happen, but it was extremely difficult, painful, and confusing.

Now, I don’t know how to experience the grief. It is complicated to lose someone that I’d already lost. Someone who was extremely important to me and who talked me through a million difficult things and who I am grateful to have known, but who was maybe not better for having known me. 

The last time I saw her, I ran into her at a restaurant on the day that my grandpa died. Shortly after that, I discovered that my grandpa was also “not that into me”, which came as such a huge shock that I doubt I’ll ever truly recover from it. It is hard not to link all of this together in my mind.

The same day that I got the call that Debbie had died, I also saw the genomic sequencing oncologist. And, coincidentally, I was also (finally)  able to speak to a doctor at Natera regarding my Signatera test. 

I would love to be able to update here with good news, but I can’t. The genomic sequencing oncologist actually worked on the science behind this test, and quit a year ago when they decided to take it commercial. He is vehemently opposed to it, finds it incredibly unethical, and told me to stop taking it. The science, unfortunately, is sound, but there is no approved way to address it. My likelihood of recurrence is extremely high, and he agreed that it would be metastatic and not local, but there’s no way to know anything else. He said I’m already doing the best thing I can by taking hormone suppression. He did not recommend additional meds, clinical trials, or scans. We don’t know if any of it would make any difference, and it would just affect my quality of life. 

The Natera doc gave me the same general spiel as the Natera “breast cancer specialist”. I said that their test claims 98.9% chance of recurrence without further treatment, and that I had no idea there isn’t “further treatment” when I signed up. He said my hormone suppression *is* further treatment. I asked if it clears up microscopic residual disease. He said “there are a lot of unknowns”. I said I never imagined there would be nothing more I could do. He said there not “nothing” I can do- I can get scans! I said I can’t. I’ve had all negative scans over the last year, I was declared NED, and my Signatera test is barely positive. There’s not going to be anything visible on a scan  and insurance won’t pay. He said “you can sign up for a clinical trial”! I have looked into the 2 that I might qualify for. One would require 8 trips to Boston (Harvard) over the course of a year- some of which are 2 weeks apart. The other is at Yale and I’m not sure I qualify. I also have not heard back from them.

I learned after all of this that the Natera doctor is not an oncologist. He’s an MD, MBA. Ultimately, his advice is to keep taking the test. In 6-9 months we’ll know one way or the other- either the numbers will go to 0 or they’ll go up enough for a scan.

(Oh really, Dr. Businessman, will my cancer either die or grow?? How very insightful! FFS…)

He’s right, though. Now that Pandora’s box has been opened I am stuck. My best chance at extending my life and/or slowing progression is to keep testing, to scan as soon as my numbers go up, and try to start treatment immediately. And, if my numbers do go to zero, I’ll still have to keep testing. They don’t have false positives, but they DO have false negatives so a zero could be meaningless. Also, it is very possible that my hormone suppression could put my cancer into a dormant state, and it will just sit there mutating until it figures out how to start growing again. So now that I’ve had a positive, I will have to watch it forever, and I will most likely never be (or even feel) cancer-free again. (Unless they find a cure, of course.)

I know this probably doesn’t seem connected, but the loss of Debbie comes in the form of strange and terrible layers for me. I feel like I don’t have the right to truly mourn her because we weren’t “real” friends. Old wounds, shame, embarrassment, rejection, and my own mortality have gotten all wrapped into it, as well. I was simultaneously fielding calls from  people who wanted to make sure I knew, and imagining that eventually they would be calling each other about me. It’s just very convoluted and mixed up. I am exhausted from thinking about all of it and all of it is terrible.

I’ve tried to stay distracted and spend my free time trying to research myself out of the cancer part of this mess. I’ve scrolled and scrolled and searched and searched. There are potential treatments on the way, but they just really don’t know how to do anything for microscopic residual disease at this point, if anything even can be done for it, or if hormone suppression is already doing it. 

I had a dream the night before last that a deer was in the backyard, and he had some sort of cord wound tightly around and all the way up his neck. The other end was tethered to something far away. I was trying to figure out how to free him. If I cut it from the tethered side then it would still be wrapped around his neck. If I tried to cut it at his neck, I would likely cut him badly. He was fighting, and turning into the coil, making it tighter and tighter. I was trying to get him to calm down and turn the other way so it would loosen, but he wouldn’t. Then I woke up. I don’t typically have dreams that are meaningful, but I guess this one pretty well nailed it.

I’ve had a lot of trouble getting motivated. I can’t concentrate. When I startle I have a panic attack. I’m overwhelmed at the thought of getting holiday cards out, or doing the shopping, or even cleaning the house. But I am determined to keep living my life, so I am powering through it as much as I can and still doing things for fun. 

We watched the nationally ranked IUWBB clobber North Carolina.

We are exercising, playing games on our VR’s, making plans, and working our way back into aerials.

We are sticking together and holding each other up. 

Literally. 😉

I’ll let you off the hook now. I just had to get all of this out.