Normal is a constantly shifting state

So last week I did a lot of things. I biked a lot, I walked a lot, I had rested a bit after the Vegas trip but not very much. On Thursday or Friday I thought my back was going out, but it was a little different from when this happens usually (I have a bad back and I'm very familiar with what it feels like when it starts to get weird and then I either rest and take muscle relaxants and NSAIDs or I end up having to REALLY take it easy because my body will not let me do anything else), more pain along my left side and in my low back on that side. I looked it up, it aligned with the symptoms for sciatica, I did a lot of stretching, and it got better. 

I had occupational therapy today and I asked my OT about this. What I learned was that for breast cancer patients like me, the drugs you go on for five years are basically trying to remove all the estrogen from your body. However, estrogen has a role in LOTS of things in your body (bones! muscles! ligaments! joints!) so this process is a little complicated for a body. Eventually things will even out, my body will figure out how it works without estrogen. This could take a year. It could take a couple of years. While I'm going through this process, my body isn't going to work quite the way that I'm used to it working. I'll be more prone to injuries. I'll need to stretch more. I'll have pain that I didn't used to have. I'll need to watch out for overdoing it because every system is going through a major shift. We're focusing on strength and stability and stretching in my sessions, and I'm getting used to the new normal. 

Normal is a thing that is constantly shifting. It's such a relief to know what's going on, though. It wasn't particularly stressful, I've had a year to get used to "sometimes things hurt that didn't used to hurt" and "sometimes you're just going to be really uncomfortable and you might not know specifically why but generally, it's everything you're going through." But this isn't anything they can really prepare you for when you start taking this medication. You are told that there are potential side effects. They list the side effects. The focus is on the effect on the cancer, not on your everyday life as you continue into the future. It's so, so important to work with those supportive teams that aren't the main teams. 

I will say it again: If you ever go through this and the place you're going has PT and OT that are specific to your cancer, get a referral as soon as you can. Your main team (surgeon, oncologist, radiation oncologist) will get you through the big stuff, but the little stuff is just as important to your quality of life in the times after the big stuff. 

I went to Las Vegas for work and it was good

I went to the Licensing Expo last week! This was my first time traveling on a plane since the diagnosis and my first trip to Las Vegas since before the pandemic started. I wore my Flo Mask Pro on the plane (I like it for travel because the seal is good and it's relatively comfortable to wear all day at an airport and on a plane) then switched to N-95 masks at the show. 

I have a little CO2 monitor I carry with me so I can see what ventilation is like in various spaces. For the show, numbers were pretty reasonable (500 or below, for context, 400 is "pretty close to outside levels" so you want numbers to be more in that range than, say, above 700) and better in the casino areas than the convention areas (which makes sense since you have air handling set up for deal with cigarette smoke in those casino spaces and not so much in the convention space). I wasn't the only person masking, but the majority of attendees were not masking. This is pretty normal at this point and I don't worry about looking weird for wearing a mask. I am very used to it. I only had one person shout something at me (couldn't hear him clearly but the tone was certainly derisive and I heard the word "covid") so that was pretty good considering the sheer number of people around. 

The expo itself wasn't too crowded most of the time. Certainly nothing like San Diego Comic Con. I was able to meet colleagues for drinks and feel fairly comfortable. I had a few meals indoors (again in those casino/resort spaces with fairly good ventilation) and managed to return from my trip without getting sick. This is incredible both from a covid perspective and from a convention perspective. "Con crud" is what we always called the inevitable illness that everyone picked up at shows in the days before covid. It was very nice to not experience that! 

I walked a lot every day, both from the hotel where I was staying to the convention and then around the strip in general. I was logging an average of 30,000 steps a day (compare this to my normal activity level of 5,000-7,000 steps on weekdays and 10,000-20,000 steps on weekends) and I had enough energy to do this comfortably (eventually my feet hurt but that's to be expected, even with comfortable sneakers). All in all a very successful experience. 

I'm very happy with how I've recovered from treatment and surgery, and again, I have to credit my occupational and physical therapists with all the work they did (and all the work they had me do) before, during, and after treatment to keep me as strong and stable as possible. I saw my OT today and we've started working on strength and stability, shifting focus from stretching and flexibility now that I've healed enough from radiation and surgery.

First bike ride since hysterectomy

 I'm about nine weeks out from my surgery and I went for my first bike ride in a long time. It was great. I'm feeling good, I mostly don't have the abdominal pains from overdoing it even when I do a lot (like mowing the lawn or biking or hiking a lot), and when I do, I just rest and they go away pretty quickly. I am feeling close enough to normal to be pretty happy about everything. 

That surgery is very strange, and the feeling of organs slowly shifting into their new locations over time is profoundly weird. But I am lucky to be at a point where I mostly don't notice it, everything seems to be working properly, and I'm glad I got it done. 

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? 

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.