A few months back, I wrote about how being diagnosed with metastatic breast cancer was like falling off a cliff. And that I knew that there would be more cliffs to come–the brain mets cliff, the lung mets cliff, the liver mets cliff, and the “there is nothing more we can do” cliff. Well, one of those cliffs happened last week: the brain mets one. The story of how this has all gone down is quite the tale. You’re going to be horrified and then relieved and then sad. This will be long.
So, a few weeks back, I emailed my oncologist (whom you will have realized by now is one of my favorite people–he’s not just my doctor anymore, he’s my friend) and said “So, I’m having these weird dizzy spells, could it be from the new drug I’m on?” And he wrote back and said it could be, but would I mind going to have a brain MRI out of paranoia? And I said, “Sure” and I had that MRI on April 3. My oncologist got the results almost immediately–everything looked normal. Hooray! We chalked the dizzy spells up to the palbociclib and went back to normal life.
Fast forward to April 13. My oncologist tells the team at the hospital where I get care that he is going to talk about my case during their tumor board that week. So, the radiologist who initially looked at my MRI took a second look, and low and behold, there are four small spots on it that she missed initially. She puts a note into their electronic records system that says “On further review, oh look, it’s brain mets” and says she left a voicemail not for my oncologist, but another oncologist in his office. Which, A, you re-read the scan and decided it’s brain mets and you just leave a voicemail about it, with someone who isn’t my doc? Are you kidding? And B, my oncologist’s office has no record of receiving that voicemail.
Needless to say, my oncologist was livid when he found out. If there hadn’t been a second look at that scan, the most likely scenario is that the tumors would have continued to grow and I would have developed headaches in a couple of months, and my oncologist would probably have said “Well, we just did a scan, so I’m sure you’re fine.” And I would have been screwed.
He began putting together a plan for treating me, along with the radiation oncologist I saw last year, and they put in a referral to a gamma knife clinic. Before my oncologist could call me to tell me I had brain mets and talk to me about the plan, I get a call from the gamma knife clinic. It went something like this:
“Hi, I’m calling from the gamma knife clinic, your radiation oncologist put in a referral for us to see you based on your recent MRI.”
“I’m confused, my recent MRI came back normal.”
“Uh…who talked to you about your scan?”
“My medical oncologist. I haven’t talked to my radiation oncologist since last fall.”
“OK…well…let me see if I can figure out what’s going on, and I’ll call you back, OK?”
“OK, thanks, I guess?”
At this point I send an email to my oncologist, with the subject line “Gamma Knife Clinic WTF” explaining this conversation. Within an hour, I get a phone call from my oncologist, apologizing profusely and explaining the situation. We set up an appointment for the following morning to talk things over.
At this point, I freaked out. I took a xanax. My girlfriends came over to prop me up. This was landing at the bottom of another cliff.
The next morning, I woke up more calm. The Hubs and I dropped the kids off at daycare and went to buy donuts for the nurses, because we’re shameless suck-ups, and went to the appointment. My oncologist comes in the room and the first word out of his mouth is “Fuck.” (This would be one of the things I like about him–he swears. We’re kindred spirits.) He said he wouldn’t blame me if I decided to go somewhere else for care, he was so horrified about how all this went down. And I told him, “Are you kidding, none of this is your fault. If you hadn’t brought my case up at the tumor board, I’d be screwed. You’re the one cleaning up this crazy mess.” And then we talked about the plan.
So, step one is, I meet with the nice folks at the gamma knife clinic, who were extremely apologetic about their roll in this mess. That happens today. I’ll probably have either gamma knife or cyber knife surgery this week. It isn’t actual surgery-surgery; it’s using a very precise form of radiation to zap the brain tumors. Gamma knife involves screwing a big metal frame to your skull. With cyber knife, you’re in a mask thing that gets bolted to the table. Both are one-day outpatient procedures with few side effects.
Step two is, my oncologist wants to move that PET scan up from next month until now. Let me get sciency for a minute: so, the thing about your brain is, a lot of drugs don’t make it to your brain because of something we call the blood-brain barrier. This is usualy a good thing, because your brain is sensitive, but the problem in cancer is, drugs that may be working perfectly well in the rest of your body don’t ever make it to your brain. So, it’s possible all the drugs I’m on are doing just what they’re supposed to in the rest of my body, but just aren’t reaching my brain. Or, perhaps they aren’t working at all on me, in which case we need to change things up and head back to chemo land. A PET scan should tell us which is the case.
Both my oncologist and I suspect we’ll see more progression on the PET. I’ve been having abdominal pain that may or may not be liver mets–and we both just have a feeling that the hormonal therapy isn’t working. PerhapsI’m standing on the edge of another cliff right now.
My oncologist said he’ll try to go easy on me with the chemo, but I told him fuck that, I’m balls to the wall on this stuff. He was like “I never have patients say that.” And I was like “I’m a mom of two small kids. It’s what moms do–unpleasant things, for the sake of their families.” Honestly, just taking some pills and hoping for the best was making me crazy anyway. I’ll feel better knowing we’re killing some roaches again.
So. What’s life like at the bottom of this cliff? You know, having fallen off the big cliff already, this one isn’t so horrible. It’s actually more like tripping than falling off a cliff. It hurts when you scrape your knee, but the trees around here are still quite lovely.
14 thoughts on “The Next Cliff”
Beth, I’m so sorry to hear you’re having to face brain mets, as a fellow metster, that’s my biggest fear. Your upbeat courage oozes out of every eloquent word, and I love your description of the fab relationship you’ve got with your oncologist. What a mistake to make and what a shock you’ve had in the way you found out – I was furious for you but also so pleased they discovered it within days of their original error. Sending you heaps of good wishes, hugs and positive thoughts for this next phase in of treatment. Yvonne x
im sorry to hear of this development. You are right to focus on the fact that the information came out in a timely manner. I’m hoping you are both wrong and PET scan shows stable. It will be enough to focus on brain mets treatment. Either way you are motivated to handle these cliffs and that will help you get through it. Thinking of you. Best, Gail (still looking out for this cliff)
Fuck fuck fuck. I know that we wait for cliffs, but we hope to avoid them for as long as possible. These are those stupid “what if’s” when someone loses something and miscommunication happens. I am so glad that they put it in front of the board and they reread the thing, but WTF. (((Hugs))) I am here for you in any capacity that I can be. I happily take angry swear wordy phone calls.
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I just rode the biggest roller-coaster ever while I read your post. I tried to put myself in your shoes, because it’s one way for me to prepare myself mentally, in advance, just in case I have to go through it too. In a way, we are all in this together.
First I want to say I am sorry you’re now going through this…new challenge. Glad your medical team has a plan for you. (I know of someone who had the same procedure done and she is now in remission.)
Thank you for sharing your story with us. Please know I’m thinking of you and will be adding you to my prayers.
One day at a time is how we do it.
ugh, scary, but you’re not alone in this cliff hanger.
How has it been on palbociclib? My doctor is putting me on that along with arimidex.
Sending you positive thoughts. Hugs.
I’ve been on arimidex for a while and now have one round of palbociclib under my belt. It’s not bad at all so far! I’m also on Fulvestrant, which is definitely causing fatigue and insomnia.
I’ve got your back if you need someone else to swear at or just want someone to text you silly things until you can laugh again and breathe again. This shit sucks. It’s not fucking fair. I’m glad they caught it early on, but man if that wasn’t the definition of a clusterfuck, I don’t know what is.
I just keep saying to myself over and over again: UNBELIEVABLE UNBELIEVABLE. It is just too hard to wrap my feeble little brain around all this that is happening to you. I just want some good fucking news from that PET scan, goddammit!!!!
Balls to the wall, damn straight… I’m sorry you are going thru this shit, though grateful you have such a wonderful onc… oh, and I love your writing! xoxo
Carolyn Frayn recently posted…it’s all in the living…
I love your words. I love your honesty. I love your humor. I love the way you talk about your kids and your life. and I am SO FUCKING SAD. I want to make you something and pray for you and hold your hand and hug you. and I just really really want you to know that someone else is out here rooting for you.
Sending love, positive thoughts and cancer butt kicking vibes from England. xxxx
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