FINALLY!!! I have some good news to share. Evan and I spent the day at Stanford last week on Monday, where we saw my second opinion oncologist and my neurosurgeon. Both are fantastic. We are so lucky to have these world class doctors within a short drive from home.
First up was oncology to discuss my bones. My scans have all been super confusing lately – my sternum (where I’ve had cancer before) is lighting up on nuclear bone scans, but not on PET/CT scans, and no one is really sure what that means. This oncologist said that it’s possible that my sternum is lighting up due to a trauma (I’ve had a sternum fracture before because the cancer weakened the bone), or that it’s residual scar from cancer or that fracture. Basically – we can’t rule out tumor, but it is also entirely possible that it isn’t cancer. So, for now, we are not going to change my systemic treatments, which is really good news. If a scan shows more conclusive evidence for tumor in the future, then we’ll have to switch up therapies. For now, though, I can stick with herceptin and perjeta. Phew.
Then we moved on to neurosurgery to discuss my latest brain MRI. As most know, I currently have two spots lighting up on my brain MRIs, and we aren’t sure if they are radiation necrosis or tumors. Radiation necrosis is essentially dead brain tissue that got damaged as a result of the brain radiation that I had back in Dec/Jan. About 5% of people end up with radiation necrosis after brain radiation. It can be dangerous, because even though it’s not tumor, it can grow over time and it’s still something in my brain that shouldn’t be there. So, it causes me symptoms very similar to brain tumors, and if it grows, then I’ll need surgery to remove the necrosis. It’s also possible to have some tumor cells mixed in with necrosis, and there’s really no way to know if that’s the case short of doing surgery and testing the tissue. Ever since these spots starting lighting up, I’ve been on Avastin, which is an IV drug that I get every 3 weeks to treat necrosis.
This MRI was a big deal, because it was the first one I’ve had since I started Avastin. If it showed improvement, that would suggest necrosis vs tumor. If the spots were bigger, we wouldn’t know if they were necrosis or tumor, but either way I would have needed surgery – a big, terrifying, risky brain surgery.
So here’s the really good news. The brain MRI showed IMPROVEMENT!!!!! Which suggests that the two spots are necrosis, and also suggests that the Avastin is working. When they told me this, I burst into tears. That was unexpected for me. I mean, I knew that I was scared, but I did not think I would cry uncontrollably with happy tears. It was just such a relief. ALL I want is to not have brain tumors. That’s it. So to hear that they think that’s probably the case…I just lost it.
It’s not for sure, but we are up to about an 85% chance that this is necrosis vs tumor.
Unfortunately, nothing is ever just straight forward. I am having some side effects from the Avastin which require that we cut my dose in half, which makes me super nervous. Avastin can cause bleeding, so I’m getting lots of nose bleeds and things like that. Nose bleeds themselves aren’t dangerous, but they indicate that the Avastin is changing my body’s bleeding tendencies, and possibly healing capabilities, so we need to take it seriously. I’m nervous that cutting my dose in half will reduce the efficacy of the drug, but there’s not much I can do about it. I just have to hope that it continues to work. If any MRI in the future shows that the spots are growing, I’m still looking at surgery. But for now, I have a reprieve.
Then I had about two days to celebrate before ending up in the ER. Evan and I were hanging out in the evening – I was coloring and listening to a podcast, and then my brain just shut down. Like, it just went bye bye for a while. It’s not the first time this has happened, but this was the worst. I could feel the fog coming on, and when it happens, it feels like I just need to shake it off, but my brain gets so lost in it, and I just can’t find my way out. I couldn’t figure out how to tell Evan that something was wrong, so I just sat there, paralyzed. Eventually he saw that something was off, and then I couldn’t figure out how to answer his questions, couldn’t focus on him, everything was happening in slow motion. It was like my brain was stuck in concrete. Then my head started really hurting, I got nauseous, and I got SO TIRED. Like, just couldn’t stay awake tired, and it came on all of a sudden. Evan could see that something was very wrong so he put me in the car and drove me to the ER. My head CT was fine, no bleeding, blood work was fine, and eventually my mental state cleared up, so they sent me home with instructions to call my neurologist the next day for a full seizure work up. Seizures are also a potential side effect from the brain radiation that I had, so it’s entirely possible that that’s what happened. I see my neurologist next week, so we’ll see what he says. It was all really scary.
More than anything, it was a really upsetting reminder that despite good news, there’s clearly still something very wrong with my brain. That’s hard to deal with.
It’s not that I thought I was out of the woods with that MRI, but I thought I was getting there. And then the trip to the ER was a painful reminder that I am still very much in the middle of the forest. But, as my therapist wisely said, the reality is that I live in the woods, and I always will. I need to just accept this – something that is far easier said than done. Living in the woods means that I live with constant uncertainty, instability, and threat. I can never completely relax. And it can get really dark in there. The fight that I am in will never end, nor will all that accompanies that fight.
But if I can find a place even close to acceptance, if I can stop raging against this truth, I think I’ll be able to find some peace despite all the unknowns and challenges. Plus, the woods can actually be a really beautiful place. I love deeper and stronger because I am sick. I’ve had some amazing opportunities come my way because of my diagnosis.
When the sunlight filters through the trees and hits the branches just right, when it has just rained and the whole forest smells fresh and alive, when you feel the chill in the air on your cheeks – the woods become a place filled with beauty and life.
Cancer will never be a “gift” to me; I will never be someone who says I am grateful that it happened to me. It has caused me and my family far too much pain to say any of that. But it did happen, and here I am living with it. So, now I live in the woods, where some days are dark and scary and others are just beautiful.
If you’d like to help me and all MBC patients, please donate to METAvivor, a non-profit that dedicates 100% of donations to stage 4 breast cancer research.