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I’ve been working my way up to spending more time in the studio. It is extremely difficult and slow going. I don’t know if I’ve mentioned this before, but we made an arrangement to rent a little corner of the local pole arts studio during the weekday/daytime hours that they aren’t using it. I thought it would be frustrating to start all the way back at the beginning- I’ve lost a lot of strength and flexibility over the last year, especially in my upper body (of course). But I’ve realized I’m not at the beginning. My body may not be as cooperative as I’d like, but I still remember a lot of what I’ve learned over the years.

The pose above is extremely challenging. Don’t get me wrong, it’s still an “intermediate beginner” type of pose, and I have not done it perfectly. My back knee is turned out a bit. In the full version of the pose, the back leg would be straight like a split. The arms would be extended high overhead. This is as close as I could get;

This is very, very imperfect. Very. 😆 Maybe it still looks impressive to people who don’t know much about aerials, but I can assure you this is not a good expression of the pose. 

The first picture that I shared, was the second picture I took. I tried the full pose, but I didn’t do it “right”. My body was unable to make the shape, so I adapted to what my body COULD do. I think the modified pose looks prettier, anyway!

People think the dangerous part of aerials is falling. And yes, if you fall and land on your head that would probably be the most damaging injury, but most aerialists are extremely aware and cautious about falls. The true dangers, in my opinion, are getting stuck and panicking. In both pics, I am in a not insignificant amount of pain… The hammock is pulled VERY tightly around my waist. Miserably so. I am, in part, holding myself up with arm and chest muscles that have undergone a LOT of damage. One leg is in a deep stretch in both versions of the pose. In this situation, if I let the pain get to me, panic, and try to hurry out of the pose, I could end up redistributing my weight in a way that makes the hammock even tighter (which could make me literally get stuck, just hanging there). If I try to jump out of it in a hurry, I could manage to get free from the waist pressure, but I could get my leg or arm tangled. This is much more likely to happen than a fall with my particular aerial apparatus. If something gets stuck like that, it could do a lot of damage.

Before going into a pose, I have to think through it, think through how to get out of it, and commit to it- even if after a certain point it hurts. Eventually, trying to avoid a little pain would just create more danger. 

I feel like all of this is a great representation of my cancer trek. (“Journey” sounds too pleasant…) I may want things to look differently, but I have to find ways to work with what I’ve got. If I let the panic get to me too much, I’m just going to make matters worse and have an even harder time finding my way through/out of the hard parts. I might eventually fall, but right now the biggest risk is getting tangled up in it all.

The last week came with some better information, or…at least I’ve chosen to believe that. We had a virtual meeting with the research coordinator for a clinical trial at Yale. I really liked him, and he had personality as a human, but he was completely unattached (emotionally) as a researcher. This was great, because he’s not angry about Signatera testing, nor is he for it. They simply know it exists, want to find out what it really means, and are testing drugs to see if they can lead to better outcomes. It’s all very science-y, which is what I need right now.

I heard from another Signatera positive patient whose doctor has been doing this test for a year and a half. He told her that they “see positives turn to negatives all the time”. The research coordinator said that actually tracks, and that they don’t accept participants until they’ve been on hormone suppression for at least 6 months for this reason. I’ve only been on it for 4 months, and for 3 of those I was on a medication that I shouldn’t have been on. I have chosen to believe that my hormone suppression will, in fact, kill off the rest of my residual disease. Also, for all of the people they’ve tried to sign up for the trial in the last year, only THREE had positive tests after their 6 months of hormone suppression! I don’t know how many they’ve tested, but I’ve decided to believe it was lots!

He did not seem to agree with Signatera’s claim that 98ish% of people with a positive test will have recurrence. He said they honestly don’t know, which is why they are studying it. This is also what a couple of oncologists told me, though some were more doom and gloomy than others.

If I choose to pursue the trial, I can do it through Ohio State, which is only 3-4 hours away (vs. Yale). It’s one of their satellite locations for the study. If I still have a positive test after 6 months of hormone suppression I will qualify for the trial. I would have to go there every month for about a year, I think, and periodically for a second year.

I was extremely concerned about doing a trial because I have no symptoms. I didn’t want to mess up my quality of life while I feel fine, and, more importantly, I didn’t want to rob myself of a treatment option later if I become metastatic because there are only so many lines of treatment available (as of now) and then you’re SOL.

I learned from the researcher that the side effects are basically the same as I experience from my hormone suppression, so that’s no big deal. The drugs are already FDA approved as a first line treatment for metastatic breast cancer. This means that they are considered safe, and also that I would only be potentially “using up” round 1 of the metastatic drugs (in other words, it’s not like I would get to the end of the line and the last one’s no longer an option because I used it “too soon”). Also, these drugs start their trials with MBC, and work their way up to earlier stage cancers if they’re determined to be safe and effective. This drug is one that’s “working its way up”, and is a similar drug to Verzenio, which you’ve likely seen commercials for. All of this made me feel a lot better, and if I continue to test positive I will likely pursue it. I like the idea of contributing to science, anyway!

In other news, we have a sick kid. ☹️ He came home from school with a fever yesterday and it just won’t go away. We aren’t sick so far, but he is pitiful. We did give him a Covid test (which pissed him off considerably…) and it was negative.

I had bloodwork done at the hospital yesterday. I’ve been bruising easily, which I think is from my hormone suppression. All bloodwork was normal, except my carbon dioxide levels were a little high. Everything else is completely within normal range.

I have my 3rd (2nd “repeat”) Signatera test Monday. Regardless of whether it’s positive or negative I won’t test again for several months. I hope it’s negative, but we know they can have false negatives, so basically I’ll just have to watch trends over time, no matter what.