Update: no news, things are going well

 Hello, I'm doing well! I have been dealing with some carpal tunnel (known side effect of the medication I'm on), but I got a bike that involves a more vertical posture and I have a wrist brace and those two things have helped a lot. I have been biking (mostly ebikes), I have been cooking more, I am spending a lot of quality time with the cats, and I'm OK.

First Zometa infusion (spoiler alert it was rough)

As part of my adjuvent therapy (the ongoing treatments that I'm doing beyond the big chemo/surgery/radiation trio), I have mentioned that I'll be taking anastrazole every day for five years (and I've gotten pretty used to it, and the carpal tunnel it caused has mostly improved) and I will also get a Zometa infusion every six months for two years. Last Friday, I had my first Zometa infusion. 

As with all things, all bodies are different, and there is no real "here's what to expect" checklist for any treatment. Doctors can tell you that there are certain side effects to expect, but because of the aforementioned "all bodies being different," you can hear the words and not understand what's really going to happen to you. This is all to say that I went into the Zometa infusion expecting bone pain ("is this bone pain?" I have often thought to myself when I have a random ache or pain that I can't identify! But not anymore!) and maybe some flulike symptoms for a few days. The day of the infusion I felt pretty good. Maybe a little nauseous, that feeling of "I am coming down with something," but I had plenty of energy and went to a great outdoor art fair in a neighborhood I like. I had some tacos, I hung out with my friends, I wandered around and the weather was perfect.

Overnight, I experienced bone pain. What I had wondered about before was probably not bone pain. Bone pain is pain. In your bones. It's terrible! I hated it a lot. By morning, I could barely move. I spent most of Saturday sitting in the recliner with a heating pad, complaining. It was probably the most painful experience I have had in the whole cancer process so far. And to recap: I did AC-T chemo, I had a double mastectomy, I did radiation, I had a full hysterectomy and oophorectomy. I have done some stuff. And this hurt the most. By Sunday things were a little better, I could walk very slowly around the block with the help of a cane, I could walk around the house without screaming (this is not a humorous exaggeration. Saturday was very challenging), the weather was great again so we grilled in the backyard. Pretty good day. Way better than Saturday. By Monday, still some bone pain, still some tightness in my back, but I could move more normally and I mostly wasn't in pain. I still felt pretty tired, so I'd get bursts of energy and then I'd feel really wiped out. Today I'm still aware that I'm recovering, but I'm good enough that if I didn't want to show it, you wouldn't know. I have three more of these infusions! I hear that the first one is the worst, and I hope that's true. 

My occupational therapist says that what she's seen over the years has convinced her that anywhere there's weakness in the structures of the body (old sprains, old injuries, anything like that) is extra affected by these treatments just because of the way they work. Before I was diagnosed with cancer, I had some nerve issues in my elbow and fingers on my right side, some joint issues, some back issues (the MRI suggested that I had arthritis in my spine, and the nuclear bone scan showed a lesion on my spine but the bone biopsy way back last year came back clear), I have an ankle I sprained as a kid, and all of those spots flare up with these treatments. I can feel it. It's so weird. 

Anyway, having cancer is not as easy as "well I did these things and it's gone so I'm done" for me! It would be really cool if that were the case, but instead, it's just a thing that's part of my life all the time, and mostly it's ok, and sometimes it makes for a difficult weekend. I'm very grateful to have my partner in my life (he stayed with me all weekend, taking care of me and the cats and also playing a lot of Final Fantasy XIV). I'm very grateful to have the cats! I got a lot of good time just resting in the recliner with buddies. I'm grateful to live so close to my parents, who brought some food over. It all could have been a lot worse, but it also was not fun. 

As I think I said in the very beginning, when this happens, cancer, any major health thing, the "oh I wish things were different" is really a "I wish this had never happened to me." But it has happened to me. And it's ok. Despite everything you have read in this post, I'm happy! I never expect treatments to be painless or cool (and I am never disappointed), it's all just a part of my life. I used to have a different life and a different body, and now I have this one. I do not spend my time wishing it were different anymore, because that's both a waste of time and a weird internalized ableism, and I'm doing my best to leave it behind. It serves no one. I appreciate the good days and all the things I can still do.

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.

Hormone therapy

 I have started anastrozole, which I will be on for the next five year. It's a pill I take every day, I'm doing well with it so far. I'm also taking calcium and a D3 supplement to try to keep my bone density from decreasing further. I have osteopenia (not unusual given everything), and it's fine, I just don't want it to get worse. My oncologist wants me to take another drug in addition to the anastrozole called ribociclib. It's not approved for my situation, but recent studies have been promising. I had initially agreed to do this (assuming we could get insurance approval), but the more I think about it and look into it, the less I want to. This medication has more side effects the one I'm on, and those side effects can be more severe. It will also involve regular monitoring of my heart and liver, since those can be affected. I've realized that I have done so many things to try to reduce my risk of recurrence, that I've reached a point where I don't feel like I need to absolutely max out those efforts. I can do many but not all of the things that are recommended, and I will still be in a better place than I was before this all began. I will trade "an additional reduction in my risk of recurrence" for "feeling good a couple of years sooner" and I won't regret it at all.

I think back to what my ob-gyn told me at the beginning of all of this, that my cancer doctors would be focused on my cancer, and it was up to me to be focused on my life. I'm doing my best.

Post-op check-in done, next phase

I had my post-op check-in (I'll have another one in five more weeks) and everything is looking good. Incisions are healing, I'm doing well. I also had a check-in with my oncologist, and I'll be starting anastrazole today (assuming the pharmacy gets it ready before this evening). I'll be on that for five years, and there's another pill my doctor would like to put me on, but it's not approved for my kind of cancer yet, so we'll see what my insurance company says. If that doesn't happen, she has a couple of other options she'd like to try. I do think about how I've already done SO much, and every additional thing does a little more to help keep the cancer from coming back. But there are no guarantees! I've already been unlucky once, so I don't approach any of this with the idea that I'm fine and I'll always be fine. I try to think of it like this: I am doing everything I can, I am listening to my doctors, I am asking questions and being proactive in my treatment and trying to balance the many, many things that are required of me, and I'm still trying to live a good life. 

If this cancer comes back, I will know that I did my best, and I'm happy with the time these measures bought me. If the cancer doesn't come back, fantastic. Incredible. I would change nothing about what I've done, either way. With every step, I make decisions knowing that time moves in one direction, I'm doing my best with what I've got, and there's no reason to second-guess anything that's already done. 

This is actually a thing that I got good at after my brother died, because you can't second-guess things around a suicide. You can't wonder what you should have done differently. You can't live in that regret. You'll never heal, you'll never move forward, you'll just dig a hole and stay there. Don't misunderstand me: You can dig a hole, you can stay there for a while. But eventually, you have to figure out how to rejoin the world. 

You're alive. Be alive. There are so many things to experience.

Recovery Update

It's very challenging to actually rest the way you're supposed to rest after a surgery like this! I'm feeling ok, I'm a little sore, I'm doing my best to not do things. My partner is staying with me to take care of pretty much everything (I can't lift things, I'm not supposed to do repetitive motions, I can't do housework, I can't pick up the cats, etc etc) for the foreseeable future. I can walk around the block and then I have to sit down because that's as much energy as I have. I feel like I'm being powered by a watch battery. Not enough power for this body! But I know it'll get better as time goes on. I'm getting a lot of great recliner time in, and I'm thinking about watching all of "Legends of Tomorrow." I took a week off of work for medical leave but I have been doing some work (it's very boring to just sit). Recovery is hard!

Surgery done

 I had a hysterectomy and oophorectomy (ovary removal) this morning. Bloodwork was good enough to do it, though I'm still slightly neutropenic. It was a laparoscopic procedure, done robotically, and I was home by noon. I'm now under a heated blanket with a very small cat on my lap (which is fine, I checked) and I'm SLEEPY. 

Anyway just wanted to let everyone know that it went smoothly, I'll be vigilant about checking my temperature and taking it easy for the next six weeks (ugh), and I'm doing well. Very happy to be done with the big stuff.

Overdue update: Radiation over, one last surgery to go

 Hello! It's been too long (there wasn't much to report). I finished radiation on Feb. 20th and have been healing up from that. My skin looks ok in most places, and then there are a couple of spots under my arm where it's cracked and the new skin underneath is very pink. I have been putting aloe on the general area every morning and night, and I have silver sulfadiazine (aka Silvadene) cream for the areas that are a little raw. 

Next week, I will have surgery to remove my uterus and ovaries (uterine cancer risk increases with certain cancer drugs, and my particular cancer is fed by estrogen, so the ovaries -- which produce estrogen -- must go). Today I went on for pre-surgery tests (EKG, chest X-ray, blood work) to make sure I was healthy enough to have the procedure done. Mostly things are looking good, but I'm neutropenic (my white blood cell count is low). This is not unusual for someone who's been through chemo and radiation, but it does mean that they'll need to check the morning of surgery to make sure my levels are high enough for them to safely operate.

The surgery itself will be laparoscopic, and done robotically! They'll make three small incisions and take everything out through there, it'll take two to three hours, and I will (assuming all goes well) get to go home the same day. After that, no driving for a week, and a number of other restrictions (basically "limit movements that engage your stomach muscles, no lifting anything heavier than 10 pounds" and a couple others) for six weeks. 

My partner will again be staying with me as I recover, and I'm going to take a week off of work in theory (I can check email on my phone so I might forward some emails?). I assume the cats will keep me company as well.

It's always a little bit of a bummer to find out that my white blood cell counts are low, even though it's totally understandable! It just makes me feel fragile. I hate it. I'm looking forward to getting through surgery (and it's fine if it needs to be rescheduled) and getting to the next phase (pills every day for 5 years, bone builder infusions every 6 months for 2 years).

Cancer takes a lot of time. 

Got my port out today!

We had freezing rain here! My partner lives near the hospital where I get my treatments, so I stayed overnight so my drive would be easier for radiation this morning. My car was COVERED in ice but I only had to go a few blocks. Radiation is going well. On Mondays, I have a short meeting with my radiation oncologist. She's great.

In the afternoon, I saw my surgeon and got my port removed! Since I'm done with chemo, and I don't have a regular schedule of infusions, it made sense to get it taken out. It took about half an hour, and it was a little more difficult to remove than they expected. I hadn't had it in for that long, in the grand scheme of things, but my body had tried very hard to incorporate it so there was a lot of tissue connected to it. This is called "scarring down." It sounds worse than it is. They cleaned and sterilized the area, cut through the scar from the port insertion (so no additional scarring!), cut through the tissue that was trying to hold on to the port, removed the catheter, and popped it out. I did not watch! I do not need to know what any of that looks like! But it was fairly painless and over quickly. I'm so happy with the job that my surgeon did, and I told him so. He said that they work very hard to make things look nice with a flat closure, and that people didn't always realize that they really did try to do an aesthetic job. I also saw the ultrasound technician who had done the ultrasound when I was first diagnosed in the hallway while I was leaving, and I was able to thank her in person for how kind she had been to me in those appointments. (She's also REALLY good at her job.)

I have talked to a number of people and doctors in my orbit about whether to get my uterus taken out when I get my ovaries out, and at this point I think I'm hoping to get it all taken out since I'm having a procedure done anyway. The downside is mostly "harder recovery," and the upside is "no more pap smears, no risk of uterine cancer."

Unrelated to all of these events, last weekend, one of the outside cats that I watch out for (I put out water for them, build little shelters for them for the winter, stuff like that) showed up on my doorstep starving and freezing. She yelled until I brought her inside. She's a very friendly cat, and I've been wanting to bring her in for a long time. She's been around since she was a kitten, for about 8 years. I got her in to see the vet a couple of days later, did bloodwork, and due to (we think) the extreme stress of having a bad tooth and not being able to eat, as well as having to navigate sub-zero temperatures for a week, she was very weak with a super low red blood cell count. She's on antibiotics and steroids (the antibiotics are just a precaution since she's been outside her whole life). In the course of pilling her on Sunday morning, she ended up breaking the skin on my pointer finger on my right hand. In my old, pre-cancer life, I would have cleaned it out, put antibiotic ointment on it, and then just kept an eye on it. But now, I can't afford to take things lightly. I went to a convenient care (like a non-urgent Urgent Care, basically) near my house (I am very lucky to live where I live), and the NP gave me some prescription-strength ointment to use, and felt that I had started treating it early enough to not worry. You may recall that on Mondays, I see my radiation oncologist! I made a point of telling her about the cat bite, and we agreed that, out of an abundance of caution, a course of oral antibiotics would be a good idea. I'm very fortunate to have this kind of access to doctors and medication. We're going to keep an eye on it, but I'm so much less worried now that I know I'm doing everything I can do keep myself healthy. Cat bites can get badly infected very quickly. Since the incident, I have been more careful about pilling the little cat, and we have done very well. 

Radiation update!

I start radiation tomorrow! It'll be 25 sessions, it's every weekday at the same time, and it doesn't take very long. They say about 15 minutes per session. Once a week, I'll meet with my radiation oncologist so I can tell her if I'm experiencing any troublesome symptoms or ask any questions I might have. I'm excited to get started (and even more excited to be done)!

Getting ready for radiation

 No updates because I'm kind of between stuff right now! I met with the radiation oncologist last week and learned a little bit about how radiation works. I've also continued to work with my occupational therapist to make sure that I'm able to get my arm above my head and in the right position for radiation. This week, I go in to get scanned. They take a scan of the part of your body that will be getting radiation, then the doctor uses a program to digitally "paint" the places to target, and this plan is reviewed by a number of different groups before it's approved, and there are a number of safety protocols in place to protect your heart and your lungs and to only treat the areas that need to be treated. I'll get three tattoos which will help them line my body up accurately for treatment. Once they have the plan approved, I'll start treatment! It'll be Monday through Friday, 15 minutes a day, for four to six weeks. I don't know when it'll start, but it'll be in the next few weeks. After that, I'll start hormone therapy, which will consist of a pill (anastrozole) every day for five years. 

Radiation affects everyone differently, so I can't assume that it'll go any particular way. I just have to do it. Some people's bodies react to radiation like it's chemo. Specifically, there is a thing where some bodies get radiation and think it's adriamycin, and then have the reaction they had to adriamycin. Adriamycin is the one they call "the red devil." It's the worst. This is a very silly thing that some bodies do! I am hoping this isn't the case for me, but I have anti-nausea drugs and plenty of practice with that feeling if it does happen. We'll see.

With radiation as with chemo, the best way to combat fatigue is to stay active. We're in January, so it's "real winter" (or "winter plus" as I like to call it). I have a bike trainer set up in the basement and I expect to get some good use out of that, as well as bundling up and going for winter walks. 

I'm ready to get another piece of this process started. 

I remember when I barely thought about my health. I don't think I'll ever have that luxury again, but that's ok. You take your health for granted when you're healthy, and you don't realize how precarious it is. It is very precarious. If you're healthy and able bodied, you're lucky. Appreciate it. It won't last forever, and that's ok! Nothing lasts forever! I'm really enjoying my life. I appreciate it more than ever.