Monday, April 15, 2024

A note about statistics and probability

 These numbers are meaningless until they intersect with your life. Every time you see the "20% chance of recurrence" or whatever, remember that it doesn't functionally mean anything. Not really. We do our best, we live our lives, we move forward. Things happen, many of which are completely out of our hands. Everyone will fall on one side or another of those statistics. Hopefully you're lucky. Sometimes you're not. That's ok. When you fall on the statistically improbable side, especially for bad news, you really get to reckon with how much of your life is just dealing with whatever happens while you are alive. It really is ok. You can live happily with this knowledge, I promise. Doing so just involves letting go of the expectations you had about what your life would look like. This can be a gift. 

Zometa: an infusion for bones

 I have to get a dental clearance before I can start Zometa. It's a bone-builder infusion that will both help with the bone density loss that comes with cancer treatments and menopause AND it may help prevent recurrence of breast cancer due to what it does in the bones. I'll have four infusions over two years, but one of the possible side effects is an issue in the jawbone, so my dentist has to sign off before they can start. I don't know if this means another dentist visit (I just went in February) but it's just the ongoing reminder that I'm in a process and that process is ongoing. 

I'll try to update when I do start it. I like having the record of how things are going, because I don't remember the details later. There's just so much stuff. 

Edited to add: got the clearance from my dentist and I'll have my first infusion in July!

Edited 1/16/26 to add: SIX! I have to get SIX infusions over 3 years! It's in all my handwritten notes but I kept writing 4 infusions in the blog (and in my mind) and I have no idea why!

Old clothes and a new body

 This is a very snappy title for what will probably be a pretty short, kind of boring entry. So my body is different now. And I don't mind it. I'm very fortunate to have been basically indifferent to the aesthetics of the physical changes (read: didn't care about having breasts when I had them, don't care about not having them now). But sometimes I will be wearing outfits that I wore for years before all of this happened and I will remember how those outfits used to fit and how they used to look. And it's profoundly strange. I liked the way I looked before. I like the way I look now. But, for example, I'll roll over to sleep on my side and I'll remember how my body used to feel in the pajamas I still wear. And I feel the smallest twinge of sadness because it's different now. 

My life is full of moments like this. 

There is a little cat who used to live in my yard, and the night before I started radiation, she came to the front door and yelled until I brought her inside. It had been below freezing for a week, and she was dying. Her name is Zelda, but I call her the tortie, because I've called her the tortie for her whole life. She's a perfect little baby, she's lived around my house since she was a kitten (she's about 8 years old), and given the state she was in when she came to my door, I don't know how she made it. She could barely walk. She was starving. It was so, so cold. She's better now, but she's inside. She's happy, and she is adjusting well to life in the house, but she still sometimes stares out at the yard and paws at the window. But she can't go back outside. Her health is different now, her situation is different. The world is different. Obviously I relate to this, and the most incredible thing here is that this is all true, and not a story I've made up as a metaphor for my cancer. 

My life is good, and I am happy, and I also miss the life I had before that was good in a different way. 

EDITED TO ADD: The little tortie made it until August of 2024 and then passed away while I was on a trip. My very good friend Amanda was watching the cats and buried the tortie is a beautiful spot in the yard. The tortie loved being outside. She was an incredibly alive little thing, she was so friendly, and I miss her every day. I am writing this in January of 2025. She has been gone for months. I still look for her in the house, in the neighborhood. She's gone but still here, you know? 

Friday, April 12, 2024

Living with this

 Saw my oncologist today and talked through the reasons she suggested the ribociclib. The kind of cancer I have is more likely to come back later. So after 5 years, I won't have really achieved a particular sort of milestone, I'll just be happy to have gone another 5 years. With everything I've done, my longer term risk of recurrence is still at about 20%. It's possible that the additional medication might knock that down another four or five percentage points, but as I told my doctor, I'm healthy now. I'm as healthy as I'll be now, and I don't want to lose the "feeling like myself, able to do things, not at the hospital all the time" in the pursuit of something that may or may not even help me in 10 or 20 years. If I had children, my personal calculus would be different. But I'm don't, so I'm doing this and I'm really happy with my decision.

Monitoring will be minimal, and I'm mostly going to be paying attention to new pain that persists for weeks. Or a cough. Or anything out of the ordinary.

The "cancer free" concept, while technically accurate, is a complicated thing for this kind of cancer. As far as we can tell, it's gone. But you're never really done. I'll spend the rest of my life knowing that it might come back. And if it does, I've got about 3 years past that point, if I'm lucky. Back at the beginning of this, when they thought it might be in my bones, I sat with the idea of a shorter life than I'd anticipated. I made my peace with it. That work was useful. I carry it with me. 

I really do feel incredibly lucky. I'm so grateful for where I'm at and how I feel right now, and I hope things go well for me. I hope it never comes back. But regardless of the future, I'll have no regrets about the decisions I made here.