It’s been a while since I’ve posted, so there’s a lot to catch up on. First, the medical.
We have spent the past few weeks going to see specialist after specialist trying to get some guidance on this possible leptomeningeal metastasis situation. One doc says yes, I have it and need treatment now, then the next says I shouldn’t treat without more conclusive evidence (either on MRI or spinal tap) because this treatment is not a walk in the park. And on and on until my head is spinning with all the conflicting opinions from a lot of really, really smart people who all know what they are talking about. It’s just that this is a very unclear situation, and no one knows quite what to do.
Then I had another brain MRI which was stable. While stable is good, the MRI’s have also been entirely unhelpful in figuring this out. So, I had yet another spinal tap to see if we could catch any cancer cells floating around in my spinal fluid. It was by far the hardest spinal tap I’ve had. The doc said that because of the number of times I’ve been poked in the back with needles, I have some scar tissue building up back there which made it difficult for her to access my spinal fluid. It took a couple of different attempts and a lot of poking around with the needle, which was pretty painful. In the end, the cytology came back negative again. The chance of catching lepto disease on spinal tap is basically 50/50, so a negative doesn’t tell us much.
Given all that, the consensus right now is to hold off on treatment. If/when we get more conclusive evidence, we’ll treat.
In the meantime, I continue with my usual systemic treatments, and I’m still living with constant headaches, nausea, monstrous fatigue, blurry vision, double vision in my periphery, and balance issues.
A few other options/hypotheses have been suggested with the aim of reducing these symptoms, but none of them are great. 1) get a shunt that drains cerebrospinal fluid into my abdomen, thus relieving pressure in my brain. Not a small surgery, and also not guaranteed to help. 2) go back into my craniotomy site and surgically remove the skin graft that they put in to recreate the lining of my brain, in case I’m having an inflammatory reaction to it. The odds of this helping are discouragingly low. 3) there’s a chance that much of this is due to the brain radiation that I received. If that’s the case, it could be a year before it gets better. The radiation oncologist, however, disagrees with this hypothesis. All the back and forth and conflicting opinions are kind of maddening.
So, because I don’t want to go through another big procedure when it might not even help me, I am continuing to just wait things out and live with the symptoms.
I was feeling pretty down and hopeless after all that. I felt like we had exhausted all of our options, we’d seen all the doctors we could reasonably see, and we still didn’t have any satisfying answers or solutions. I just wanted someone to help me feel better, and the realization that I just have to put up with feeling like this every day was hard to swallow. It still is.
That said, two big things have happened over the past few weeks that seriously lifted my spirits.
1) The METAvivor fundraiser was a HUGE success! The Michaels on Main auction raised over $11k, bringing total fundraising efforts to date to over $26k. The support that we received from our community in raising this money was astounding. It meant so much, and I am forever grateful. It truly gives me hope that things might get better for those of us living with MBC.
2) I went to LA last weekend and watched a story that I wrote about facing breast cancer at 25 get turned into a short film, bare, by the incredibly talented Kerith Lemon.
I actually got really, really sick the week before and almost didn’t make it down to LA at all. On top of the mother of all viruses, my infusion got pushed back a day, which meant I would have to travel the day after treatment. But, after many doctors appointments and lots of sleep, my fever finally came down and my [very nice] parents drove me the 6.5 hrs to LA the morning after my infusion. Very grateful for them. I spent most of the drive laying down on the back seat and arrived a little worse for the wear, but I made it!! My brother and his girlfriend live in Santa Monica, so luckily I could stay with them. It was great to spend some quality time with them (and their dog, Buddy).
On Friday I hopped in my very first Uber and headed over to the set to meet everyone. I have no idea what I was expecting, but I was blown away when I got there. Everything was so professional! We had the hair and make up room, all the lighting rigged up, lots of very expensive camera equipment, a full crew – I was on a real film set. For a film that I helped write, based on a story that I wrote. This was really happening. I also met all the actresses, who were lovely people. In fact, everyone there was lovely.
Then I got to see all that lighting and equipment in action on Saturday when we started filming, and oh my god it was so cool. I don’t want to give too much away before the film is released, but let’s just say that Kerith had found a way to make exactly what she described to me when she first pitched this project happen, and it was so awesome to see it come to life. I have always trusted Kerith with this project, with my story, but this weekend made me realize just how lucky I am to have her direct this.
Saturday we mostly filmed Aurora Perrineau‘s scenes, who plays the character based on me, and good. lord. This girl is talented. Kerith and I, along with the crew, were outside the room watching on a screen and listening to the dialogue on headsets, and all I kept thinking as I watched her on the screen was – yes. We chose the right girl for this part. She nailed it.
It was totally surreal watching her act out scenes that I had been through in real life, but for the most part I was able to mentally keep some distance between her performance and my real life. Until Sunday. She really got me on Sunday.
We filmed some emotional scenes with Aurora and the other actresses, who, for the record, are also extremely talented, and these scenes are the ones that I often think about in my real life. It was a day 7 years ago when all of this breast cancer crap was just beginning, and I was just starting to accept what was happening. I was also filled with fear – fear about what would happen to me, how I would look, who I would become, if I would live at all. And here it was being acted out in front of me, in a very realistic way. Part of me wanted to sob (but I didn’t want to be that girl sobbing on the film set, so I held back), part of me felt numb to it – it was all just so surreal – and part of me felt damn proud of myself. Proud that I had created something worthy of all these people coming together and working really freakin hard to turn it into this beautiful film; proud of how far I have come since that day 7 years ago when I wondered if I would ever feel beautiful again, if I would ever know what it meant to be loved by a man, if I’d have the strength to get through all that was to come. Proud that I found the strength, that I continue to find it, every day. Proud that even when I feel sick, I get up, push through, and have the experiences that mean everything.
I also learned one very important thing this weekend. I could never be an actress, because I sweat way too much. Seriously! It was about a thousand degrees on set and the actresses all sat there looking stunning, while I’m standing there sweating through my dress. I am much better suited to writing in an air conditioned room.
The heat aside, the whole weekend was an experience that I will treasure. Stay tuned – the film is going to be amazing!