bald faced

I felt fairly self-conscious about going out in public with my buzzed hair for the first couple days, and then got more comfortable with it. That following week I started noticing hair shedding, which has happened in spurts and stops since then. A popular tip on the cancer forums is to use a lint roller on your head to easily grab the loose hairs as/before they fall out, and it's surprisingly effective... there have been times when I filled multiple of the sticky sheets with stray hair just rolling it around my head.

Something you don't often hear about is that your scalp actually gets tender and sore as hair falls out. For me it was mostly on the top of my head, and as short as it was anything that moved the hair I did have, would hurt. So eventually I asked Zach to shave it down with clippers, which almost instantly made my scalp feel better.

 This look is taking a bit longer to get used to... It's weird looking in the mirror and thinking "Whoa, I look like a cancer patient." Followed by, well, acknowledging that that's exactly what I am right now.

The hair loss is a strange thing to observe. I'd estimate I've probably lost about 50% of the hair on my whole body, in a way that leaves some areas patchy and otherwise just...thinned out. I'm building up a collection of hats and beanies, for comfort, sun protection, and also just warmth-- turns out not having hair means your head gets cold way more easily. I also have a handful of fun costume wigs on loan from a friend that I may play around with from time to time.

I've also noticed that without hair, I'm gravitating much more towards using a bit of makeup, earrings, even painting my nails. I think it's part having so much more focus on my FACE when there isn't hair to help share the spotlight, a bit of self-pampering, and also just wanting to reclaim a bit of femininity. An effort to maybe not totally look like a cancer patient, and sorta "own" the look a little.

the short and long of it

To say I've learned a lot about cancer (in general and breast cancer specifically), treatment options, etc, in the past 1-2 months would be... an understatement. I've been surprised by a lot of the information I've learned. One of those surprises is that I had this idea that, ok, cancer sucks, and going through chemo and surgery sucks, but if you catch it early then you just you fight it, beat it, and move on, right?

Well, yes and no. I've been surprised by the many much longer term affects that will stay with me for a long time. An obvious one, of course, will be losing one or both of my breasts. Once I get through active treatment (my 3-4 months of chemo, surgery, plus probably continued chemo/targeted therapy infusions of some sort for several months after that), then I'll go on hormone therapy for 5-10 years after that, launching me into early menopause and all the fun things that come along with that. Breast cancer surgery often involves removing some number of lymph nodes, which depending on how many will put me at risk for lymphedema in my arm and hand for years afterwards.

Also, most cancers, if they're going to recur, usually do so within the first five years, which is why 5 year survival stats and disease-free anniversaries are such a big thing. But ER/PR+ and HER2+ cancers like mine can also recur later, even 10-20 years in the future. It will be a much longer timeline before I'd be considered "in the clear" (if ever).

Now, it may turn out that none or few of these things even affect me. The usual recurrence and survival statistics are outdated because many of them were collected before many of the newer drugs and targeted therapies became common (Herceptin and Perjeta are, apparently, quite the wonder drug for her2+ cancers and has dramatically improved outcomes. One review I found showed that recurrence rates without targeted therapies for HER2+ cancers were 30-50% in the first 10 years, and with them it goes down to 25% or lower depending on different factors). I feel pretty confident about my odds of going through treatment and emerging cancer-free at the end of them. That said, while recurrence rates are relatively low, they're still a bit high for comfort. It's hard not to feel like I'll spend the next few decades looking over my shoulder waiting to see if it will come back.

I'm grateful that we caught this early. I have a lot of reasons to feel hopeful and optimistic. And yet, it's a bitter pill to swallow to accept that not only is breast cancer turning my life upside down for the next 6-12 months, but that there's also a list of ways that it will stay with me for years and decades to come.

Chemo round 1: side effects

 It's been two weeks since my first round of chemo. For the following 4 days I basically slept like a cat, probably 14+ hours a day. I also felt so mentally exhausted that even watching tv felt like it required more energy to focus than I had available. Thankfully I never felt much nausea, I was pretty proactive with taking meds at the first sign of anything. Heartburn was definitely an issue, though.

I started feeling a bit more alert starting on day 5, though then things switched and I started having trouble sleeping. My nose and mouth started feeling really dry. Unfortunately the dry mouth then turned into sores that made it difficult to eat anything other than very soft, bland foods for about a week but that's finally been getting better and I have a better idea of what to do to help prevent it being as bad next time (hopefully). I haven't experienced the metallic taste people talk about, but food as tasted weird/different at times and generally somewhat more bland, like if I use sound as an analogy for flavor it's like the volume has been turned down.

Energy has been a lot better this second week, it still comes and goes but most days I've felt good energy-wise. Interestingly, the chemo does seem to have possibly put my autoimmune disease into remission at least temporarily, as my joints have all felt completely fine this whole time. So that's a silver lining.

Most people start losing their hair at about the 2 week mark after starting this chemo regimen. At first I figured I would wait till I saw signs of hair shedding before buzzing my hair, but then I realized that the waiting and anticipating was making me feel anxious so opted for a proactive approach instead and buzzed it last night. I'll admit that it's pretty darn nice having hair be this low maintenance. I haven't noticed shedding from my head yet, although I have noticed that my underarm hair hasn't grown since shaving it several days ago, and also my leg hair is definitely thinner and patchier.

Emotionally, I've been managing pretty well most days. I'm good at putting one literal and figurative foot in front of the other and just getting through the next hard thing. I did have an opportunity this weekend to spend some time in the woods with close friends and it allowed for some space to let out a lot of the grief I feel about this diagnosis and the way it's taking over my life and all the temporary and permanent changes, discomfort, and uncertainty ahead of me. It felt soothing and cathartic. This is hard and it sucks, but I'm grateful for the resources I have available to me for dealing with everything, including all the great people who love and support me and say the right things when I need to hear them.

First Chemo Infusion

The past week has been kind of a lot. After getting the port placed on tuesday, I also had an MRI and heart ultrasound on Wednesday (as a precaution to monitor my heart bc of one of the chemo drugs I'm taking), and then as Zach and I were walking out of the MRI we spotted a covid clinic and decided to get me a booster before starting chemo. So then between being sore from the port, and tired from the covid booster, I was pretty useless for the next few days... Then got a bit of a second wind over the weekend and Monday, before having my first chemo infusion yesterday (Tuesday).

The infusion went smoothly enough, my nurse was nice. I was given something to prevent nausea, which made me pretty sleepy, but then I think the first drug on the infusion gave me restless leg which made it hard to sleep. But that eased up over the next few hours. I was there for about 6 hours in total before being released and able to come home. I felt pretty ok after, other than tired...I went to bed around 9pm.

It's kinda of an odd feeling today, waiting around to see what side effects I'll have and when they'll show up. I'm sleepy and have a bit of heartburn, but nothing too uncomfortable. I've been catching up on some shows. My mom ended up flying out here Monday and will stay for a week, it's nice having her company and also knowing she can take care of cooking, etc, so I can just rest.

A couple medical updates: I got the results of my genetic testing today, which was negative for almost everything (I'm apparently a carrier for one gene that can be associated with colon cancer but it's recessive so shouldn't affect anything). So that's a relief. However my oncologist did find a small possibly-suspicious spot on my left side in the MRI (the known tumor is on the right) so I'll get that checked out next week. I did get some very sweet gifts from friends last week, which really warmed my heart. It helps a lot to feel so loved and cared for by so many people as I face this big, scary thing.