End of the year thoughts, big list

 It's been a very interesting year! Lots going on. Many changes, etc. I am thinking about how grateful I am that things have gone as well for me as they have, while also thinking about how it takes good insurance, a good in-network hospital that isn't too far away, money, an incredible in-person support system and more to be able to move through this as easily as I have. I realize how lucky I am, and I know that my experience is far from universal.

Even thinking about the sheer number of people who have helped me within the hospital and insurance system:

My gynecologist, who noticed I was due for a mammogram and pointed me to the breast center in the same hospital, since they do walk-ins
The mammogram technician
The billing support folks who got a LOT of calls from me and walked me through how things would work with my insurance
The check-in staff at the breast center
The ultrasound tech, who made a point to be the same person I saw every time I went back so I would have someone familiar as I went through a scary diagnostic process
The radiologist who spotted the lymph nodes and insisted on a biopsy
The MRI techs
The nurse navigator who helped walk me through my next steps once I got the diagnosis
The case worker my insurance company assigned me, who checks in on me every month and sends me information on things if I need them (she's a former hospice nurse and she's delightful)
The check-in staff on the main floor of the hospital
My oncologist and her nurse
My radiation oncologist and her nurse
The nuclear bone scan tech, whose wife was also going through chemo and who was very kind to me and showed me where all the parking lots were
The CT scan techs
The echocardiogram tech whose sister had cancer and wore a mask when no one else was masking
My surgeon and his nurse
The anesthesiology team
The various nurses who prepped me or called me before surgeries to make sure I knew where I was going and what I needed to do
The infusion center team
My physical therapist
My occupational therapist
The gynecological oncology team 

This is NOT a full list of the people who were part of my treatment! And I'm not even done with treatment! But I want to sort of show you how many people it takes for something like this. Just in one hospital. For one person. The sheer number of people involved in my care. It's unreal. 

I am so grateful to live in a city with a good hospital, for that hospital to be in-network, to have good insurance (thanks, COBRA), to have enough money that I never really worried about that element of this process (though I did worry about it because things can go sideways and even with a relatively low out-of-pocket max, insurance can be mysterious and all messed up), to be good at navigating phone trees and to be comfortable asking questions and pushing back on charges (this entire process would be a nightmare for people with anxiety, or people who don't have the luxury of time to sit through the long wait times on phone calls. I often look back on my customer service days and appreciate the things I learned during that time that have carried forward through my life). I am grateful for the people in my life who were there for me, from people who reached out to share advice to the people who sent me photos of their pets to the people who were part of my daily life making sure I had everything I needed.

I am so grateful for so many things. I got through the year. It sucked, it was hard, I felt bad a lot of the time, I've still got a long ways to go. But I feel good right now, and that's pretty incredible. 

tiny update

The drain holes finally healed up a couple days ago! So if you get this surgery and your drain holes take, say, three to four weeks to heal up? Very normal!

I went rollerblading today, just for a little bit. Lots of safety gear. It was so much fun. 

I'm feeling good. I'm working through the cording with my occupational therapist (I'll be in good shape for radiation, I can raise both arms, my right arm is a little tighter than the left arm due to the cording), she measured for lymphedema, and everything is looking good! No issues at this time!

Woke up with a few thoughts

 I wanted to write these down before I forgot. I was thinking about the most helpful things to me so far (I still have plenty left to do, but I think chemo and surgery were, for me, the biggest pieces of this process).

So here's a list of my best advice to anyone going through this (either directly or as part of a support system) so far:

1. Ask every question you can think of, and write everything down. If you're not comfortable with a doctor or a process, it's ok to ask for a referral or to talk to other people. You're going to be working closely with these people for a long time, and if you don't like or trust them, it's going to cause you even more stress. Don't do this. I happen to love my medical team, I feel comfortable asking them questions or pushing back on things, etc. This level of comfort makes everything easier.

2. Remember that you are more than your cancer, and you are more than your treatment. Find things that make you happy and hold on to them even when you feel terrible or your news isn't what you hoped for. You're here, you're alive, in so many ways it might not feel like it's ever going to be ok, but try to find joy where you can.

3. Get a referral for physical and occupational therapy as early as you can. You'll probably hear about it in your first consult, and even though you're going to be overwhelmed with information, if you have it in you to do this, you will not regret it. Being in PT and OT early has, I believe, made a HUGE difference in my ability to get through chemo, to get ready for surgery, and to recover from surgery. PT and OT. DO IT EARLY, DO IT REGULARLY!

4. Talk to people who have been through what you have been through. Not necessarily in a support group setting (unless that is something that appeals to you). It's really helpful to get practical advice and recommendations for post-surgery garments and strategies and things like that (or even "here is the candy that helped me deal with how saline tastes like nail polish remover" - for me, it was ginger chews). 

5. You don't have to talk about your cancer. But you can! I obviously love talking about it! It's part of my life, it's not weird or embarrassing for me, but I'm VERY weird and embarrassing so just do what you're comfortable with. NOT talking about it, to me, seemed so much more stressful. So this is what I've done. 

6. If you're getting surgery and you don't want to get reconstruction, talk to your surgeon about a flat closure (also called an aesthestic closure). I have found that surgeons, even very good ones, will leave it up to you to ask questions, and if they don't know that you want a flat closure, they won't assume that you do. I asked my surgeon about a flat closure, we talked about it, he did a great job, and I'm very happy with the way my surgical sites look. 

7. People are going to flail. A lot. They are going to want to help you and they aren't going to know what to do. Sometimes they're going to try to do things they THINK are helpful that are actually 1. not helpful 2. more work for you 3. super stressful. If possible, take these attempts in the spirit in which they are intended, but just be aware that people are going to basically get really dumb about certain things because they're freaked out and worried about you. It is OK to simultaneously appreciate that they're coming to this from a good place AND to be extremely annoyed about it. You can say no to offers of "help" that are not helpful. You can also tell people to leave you alone. Feel all the feelings. It's ok. This is not about them. This is about you. Do what you need to do to preserve your energy and your sanity. You are the expert on YOU. And you are ultimately the decision-maker on what you need in your life and what will be best for you. Don't let anyone make you feel bad about this.

8. If you love someone going through cancer stuff: Think about what you're asking of them when you offer to help, because sometimes the things you think would be helpful are actually more work for them. And if they don't accept your help or your advice, remember that they know their situation better than you do. So try not to take it personally, and just follow their lead. 

9. Be realistic about your energy levels throughout everything. Staying active is important, but rest is important. If you're feeling bad, tell your medical team. They'll have meds and strategies to share with you.

10. The people who consistently checked in just to say hi and to see how I was doing were so incredible. This tiny normal thing meant a lot to me, and helped me feel connected even while I was tired and feeling terrible. Little things like this (texts! emails! whatever!) are actually very helpful.

I still have quite a bit of stuff ahead of me, so this is not an exhaustive list. But maybe you'll find it helpful.

Officially cancer free!

 I didn't want to make anyone wade through a post to get to the big news. I saw my oncologist today, the surgery was successful, they got everything, and I'm officially cancer free!

I will still be doing radiation, I'll still get my ovaries out, I'll still be on hormone therapy for years to come, but I'm feeling good.

Surgery recovery update: I get a little less sore every day. My range of motion is still a bit limited, and I've got cording in my right arm. I saw my occupational therapist today, she's confident I'll be where I need to be to start radiation in a few weeks (I do not know when I'm officially starting radiation, but my consult is in early January), and we're going to be working on the cording between now and then. This involves a very gentle massage to loosen up the cords, and I'm still taking it pretty easy. Very gentle, limited stretches, shoulder rolls, just making sure the right shoulder (which is the tightest and sorest) doesn't freeze. 

I'm feeling better than I've felt in months and months. Maybe since my initial mammogram. It's really great. And I stopped by the infusion center (everything is in the same hospital) to share the good news with the team that helped me through chemo. Just a great day. 

Edited 1/15/26 to add: I didn't include this at the time but finding out that I had to have another surgery (for ovaries) and get an infusion for three years REALLY bummed me out. It just felt like finding out that there was a whole wing of a building that I hadn't known about that I now had to navigate. They don't tell you all the things you'll have to do at the very beginning so they don't overwhelm you, I guess? Or maybe things might change depend on how your treatment goes. But it felt devastating in the moment to have more things added on to all of the things I was already prepared to do. It was fine, ultimately! But that moment of "are you kidding me? more? I have to do even more?" was hard. So hard that I think I just left it out of the blog because it was too upsetting to be honest about at the time. 

Feeling it today

At my appointment yesterday, the surgeon mentioned that some people do really well the first couple of weeks after surgery and then feel worse in weeks three to six, because of the healing process and nerves, etc. I am finding this to be the case! I'm certainly not as uncomfortable moment to moment now that the drains are out, but the holes where they were removed are still in the process of healing up and it looks like someone stabbed me with a pencil. This is exactly as gross as it sounds. They will, apparently, close up in a few days. 

I think that in the time immediately after surgery, there's so much going on with a body that you can't really focus on where or what specifically is hurting. There's also a lot of adrenaline sort of powering you through. Now that the drains are out and the saniderm wrap (it looks like saran wrap and they put it over the whole site so you don't have to deal with dressings, which is awesome) is off, I'm able to focus on which parts of my body hurt. It's still not terrible. It's manageable with tylenol or ibuprofen at this point. It's just interesting to see the evolution of this healing process. 

It's hard to describe these sensations, but it's a little like when your whole body is cold, and you get a little numb, and then only when you start to warm back up does that coldness become painful. This is kind of (but not really) how I'm feeling, if that makes sense.

My energy level is still great (I have been warned not to overdo it because I'll go from feeling really good to feeling like I have made mistakes) and I'm not having a bad time, I'm just feeling what I've been through a little more than I was able to when I was still coming off of the initial surgery. 

Drains are out, hooray

I'm a little sore but I'm very happy to not have drains attached to me anymore! I still need to take it easy, but everything's looking good, and I'll continue to heal up over the coming weeks.

Edited to add 1/16/26: They said the drain holes would close up within a few days and this was NOT true. It took weeks. It wasn't a big deal, but because I had been told one number and it wasn't that number, I got really worried about it. There was nothing to worry about. It just takes time for tissue to fill in the holes from the drains, and you just need to keep those areas clean in the meantime. 

The various aches and pains of mastectomy and axillary lymph node dissection

 Recovery has gone smoothly, all things considered! The pain has been very manageable (I haven't even taken anything for it since the first couple of days), the drains are very manageable (though I am still hoping to get them out soon, as having drains in means that any jostling is uncomfortable), and there's tightness in various places but it's something I'm getting used to. I have some cording, which is very normal for this surgery, and I've got an appointment with my occupational therapist this week and I know she'll have some exercises for me to do to help resolve it. 

The armpit where the lymph nodes were removed is sore and also numb in various places, so I tend to try to keep my arm away from my body so I'm not putting pressure on that area. It's also swollen, which is to be expected. This is probably the most painful part of my body right now. My chest is doing pretty well (again, areas of numbness), I have an appointment with my surgeon tomorrow so hopefully things will be looking good and healing well. I can't see anything, since the incisions are covered with steristrips, which look like strips of duct tape. 

Cording, for those who don't know, is a thing that happens to a lot of people who have breast surgery, particularly when lymph nodes are involved. It looks and feels like cords under the skin, and it can be painful and restrict movement. Basically there are stretches and exercises and specific massages that therapists can do to help break up the cords, which are then reabsorbed by the body. It's grosser to think about than it is to experience, honestly. When I read about cording back at the beginning of the whole cancer process, I though "oh no, that sounds super stressful and weird and hard to experience." At this point? It's just another thing. It's not a big deal, it's actually helpful for me to know that the pain from cording isn't important, if that makes sense. It doesn't mean anything is wrong, it doesn't mean that there's any damage being done, it's just this weird body thing! 

Until I meet with my various medical specialists, I'm just continuing to stay active (but not too active). Lots of walking, moving within the range I'm allowed to protect healing, just continuing to live my life. There are some fleeting pains, but most of the time I feel pretty good. I feel like myself. My energy level is pretty much back to normal, which is a huge relief after all those months of chemo. 

Edited to add 1/17/26: I forgot to mention that during the surgery they ended up removing 27 lymph nodes! Apparently in this case, they just scoop some out and they don't know how many they're getting, then they check to see if there's any cancer (there was not). This is not what I was told to expect (by someone not on the surgeon's team). I thought they'd somehow make the three affected lymph nodes stand out and only take those. No. That's not a thing in this case! This increases my risk of lymphedema, so I was happy to later do a lymphedema teach session with the OT who specializes in lymphatic massage. So far no problems but it's have compression gloves and a sleeve just in case that ever changes and I don't get shots or blood draws in that arm.