DONE with chemo! Next up: mastectomy

I finished chemo about two weeks ago (!!!), and am feeling surprisingly good already afterwards. I'm still having some mouth/taste weirdness, but energy-wise I feel better than I think I have in a while? I'd expected to be more worn down by the cumulative effects of chemo but maybe my body is just so happy to be done with it and not have to go through any more cycles.

And, great news-- the chemo did its job. My tumor has shrunk so much that it's not detectable by breast exam or ultrasound, which also means it likely killed any stray cancer cells that may have been floating around anywhere else.

On a mental/emotional note, one interesting aspect of everything is that dealing with all the chemo side effects kinda forced me to be micro-focused on getting through each moment/day, one step at a time. As I've started feeling better and putting chemo behind me, it opens up space in my head for thinking about the bigger picture and what all comes next, which can be a little overwhelming. The next big step ahead is surgery. I've been trying to mentally prepare for that the past few months but all of a sudden a lot of big feelings have been coming up about it... about the surgery itself, about what the recovery will be like (how painful, how long will it take to do normal things, etc), about what it will be like to get used to what my body will look like afterwards.

I met with my surgeon today, and am actually feeling a lot calmer. He was very reassuring and optimistic, easing a lot of my fears. I'll be getting a mastectomy and sentinel node biopsy in about a month (Jan 2nd, 2024). About a week afterwards I should get the surgical pathology report back, which will tell us things like if any lymph nodes had any evidence of cancer, and if the tumor really is all gone or if there were any residual living cancer cells left. That information will then guide my next treatment options.

In a way I think this next month ahead, waiting for surgery, will be a strange space to be in. Part of me wants it to hurry up and just get it over with already, rather than spending the next several weeks anticipating and thinking about what-if's. But I'm also glad for a month break from treatments. I'm brainstorming ways to really make the most of this time... I want to take advantage of not being so exhausted all the time and get to do the things I've had to put off these past several months. And, hopefully, staying busy will keep me from overthinking about surgery too much...

Three Month Chemoversary

I started chemotherapy 3 months ago, yesterday. I honestly can't remember if I even mentally marked the 1 or 2 month marks of chemo, but this one stands out to me for some reason. I think up till recently I was so focused on looking forward and trying to get through the chemo, and just didn't (bother? want to? couldn't?) look backwards to mark the passage of time behind me.

A lot of survivors mark the day of hearing their cancer diagnosis as their cancerversary. I think for me finding out about having cancer felt like it came in trickles (first finding the lump; then the imaging and biopsy where the doctor didn't exactly come out and say "it's cancer" but warned me to expect not-great news, so that I left that appointment already beginning to process the worst; and then finally the phone call that confirmed it two days later). But August 1st, the day of my first chemo infusion, is a date that sticks in my mind. For one thing, it's an easy date to remember, but also it marks a stark Before vs After in a way that feels more visceral and real than even hearing the biopsy results. I suspect it's the date I'll note each year as it passes.

I have some complicated feelings about the usual "battle/warrior" cancer metaphors. It's a little difficult to envision yourself fighting some brave battle when most of what you're doing is...lying on the couch. It seems more true to say that the drugs are doing the fighting for me, while I passively try to reduce the damage and discomfort in whatever small ways I can, and focus my little energy on resting and passing the time.

These days I feel like I'm crawling towards the finish line and it's finally in sight... while knowing full well that the finish line for chemo is only one milestone I need to reach, with still others after it to follow. My final chemo infusion is in two weeks (!!!!). A couple days before that, I'll meet with my surgeon to plan my mastectomy, which will likely be towards the end of December. That pathology report will help determine what further treatment I may need moving forward (for example, radiation). I will need to continue some form of immunotherapy, plus figuring out what kind of hormone therapy I will take and for how long. There's still a long road ahead. But I have no qualms in saying chemo has kinda kicked my ass, these past 3 months have felt like a whole lifetime, and I am very, very relieved to be so close to being done with it.

Along came covid...

This week we had a new fun wrench thrown into things… Quinn, Zach, and I all got covid.

Quinn succumbed first, but he had just gotten his cold and flu vaccines a few days before so at first I thought it was side effects from the shots. I finally tested him on Monday, Zach tested positive on Wednesday, and then me on Thursday. So far Donovan, my mom, and my dad have stayed in the clear, and hopefully will remain that way as we try to isolate and mask when around each other.

Zach and I got on Paxlovid pretty quickly which has definitely helped with symptoms. Zach is getting to find out what chemo mouth is like (the paxlovid metallic taste is very similar). Quinn is just about back to normal, and hopefully thanks to the meds Zach and I soon will be, too.

Because everything must always happen all at once, this past week was also when we started a long-awaited project to fix the foundation on our house, which has meant that while we’ve been sick and quarantining at home, we’ve been serenaded by the gentle sounds of jackhammering and drilling…

It’s been a little rough feeling trapped at home, first by chemo exhaustion and now with covid. I’m really missing having more normalcy in my life, and feeling some fomo/jealousy about friends going out and doing fun things with other people, etc. I’m really focusing on getting through each day, and making that an accomplishment in itself… and that’s been helping a lot, actually. Along with journaling. The weekend has also provided a nice break from construction, and the weather has been perfect to spend a lot of time in the yard which is a nice change of scenery from all that time in bed.

halfway(ish)

I think I can safely say I'm now at about the halfway mark with chemo. I had my 3rd round of chemo on Sept 14, about a week and a half ago, and I'm emerging out of the chemo fatigue and entering my window of "good" time (when I feel closer to a normal human vs one being willingly poisoned) for a bit of time before going in for the next go-round in a little over a week. I've been keeping a log of the side effects each cycle, to look for patterns and help me know what to expect for the next ones to come.

Something I read in my pre-chemo researching was that many of the chemo side-effects can actually lessen with each cycle, but the fatigue tends to be cumulative. So far this is proving true. Whether because of my body adjusting, or just learning what tricks/meds/etc to use to prevent/manage them, some of the side effects that were most bothersome after the first chemo (like the mouth sores that had me eating a diet of smoothies and cold mashed potatoes for a week) have been MUCH milder or not a concern since then, thank goodness.

However, the fatigue has also definitely deepened each time. I'll be pretty wiped out starting from Day 1 (day of chemo infusion) and for the next few days following. It's a deep physical and mental fatigue unlike anything else I have experienced, not even pregnancy tiredness (which I thought had been pretty all-encompassing)... where really all I can do some days is lie in bed and stare at the wall.

There will then be a day when the fatigue lifts-- I can think more clearly, and instead of lying in bed all day I actually feel like getting up and moving about, and don't get totally exhausted from small things like fixing myself a bowl of cereal or taking a shower. It's a damn great feeling, to have energy again.

After the first chemo, that day came on Day 5. With the next cycle, it was Day 7. This last time, it wasn't till Day 10. It's...not an encouraging pattern, given I still have 3 more cycles to go. I thought with each cycle I would have about a week of being laid-up, and then two weeks of feeling more ok, but that balance is shifting and so are some of our plans.

Thankfully my mom's schedule and travel plans are flexible enough that she's able to spend as much time here with us as needed, and we're taking advantage of that, with her being able to stick around longer to give me more time to just rest. Nothing about cancer is convenient or easy, but I have to marvel at how well many things are set up for us having to deal with this. I'm so grateful for my mom's help, and for my boys being the ages they are and being so independent, and just how much support we have that allows me to focus on doing what I need to and knowing everyone else is well taken care of.

Approaching my birthday not unlike how one might approach a possibly rabid raccoon

I was so excited to turn 42 last year. I celebrated my birthday by booking a cute little airbnb surrounded by redwoods, bathing in the beauty of solitude and light filtering through the trees and taking pretty pictures of the nature around me. I think it's my favorite way I've celebrated a birthday. I had every reason to feel happy and hopeful about my birthday….my 40s had been great to me thus far, and 42 -- the answer to life, the universe, and everything, after all-- was bound to be a good year, right?

Welp. Right about then I was diagnosed with an autoimmune disease (UCTD). As I grappled with the reality of having a chronic illness, I then found I had skin cancer (smack dab on my forehead, no less). And then-- the pièce de résistance, apparently-- came breast cancer.

To be fair, there's been a lot of really great stuff this past year, too. But, man... it's not been what I expected.

As I face my upcoming birthday next week, what I feel is reminiscent of when we were approaching New Years Eve at the end of 2020. There's one part of me that wants to shout "GOOD RIDDANCE, 42!" And another part of me that doesn't want to jinx it, who feels fairly apprehensive about what 43 might bring... What new ways might my body find to betray me?

[This is also where I have some complex feelings about the whole "cancer warrior/battle" metaphor. The odd thing about cancer is that, unlike a threat like covid or bacterial infections, etc, the enemy isn't some outsider who invaded and is wreaking havoc where they shouldn't be... my cancer is made of me. I am fighting myself. It's me, hi, I'm the problem it's me]

I don't know what the year ahead has in store for me. Well, ok, I know that a lot of the next several months is gonna suck. Though I trust/hope there will be good stuff, too. It's feeling a little hard to trust that there won't be other ways that the rug gets pulled out from under me yet again. I'm trying to embrace a cautious optimism, along with an awareness and deep appreciation of the good things I have and feel and experience, and being present in each moment because you just never know what surprises-- good, or not so great, and everything inbetween-- may be around the corner.

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.

more poking and prodding

I got to have two procedures today. First I went in for an additional biopsy, to check a possibly-suspicious spot next to my tumor. Then I went to the hospital to get my chemo port installed. Everything went smoothly, the nurses and doctor were all great. The one snag was the procedure getting delayed and so spending extra time in the pre-op room trying to find something interesting to watch on the little cable tv they provided when 90% of the content appeared to be commercials.

The procedure itself was quick and smooth. I’m now back home and loading up on Tylenol and cold packs. It’s pretty odd being able to see the port under the skin, but it’s also kind of a nifty little gadget. Here’s to it healing quickly and not being too bothersome.

The boys have been instructed to help me out since I’m not allowed to use my left arm too much the next few weeks while the port fully heals/sets in place.

New haircut! Also, I have cancer

When I chose to get "this too shall pass" tattooed on my arm, I didn't realize quite how helpful of a reminder/mantra that bit of ink would prove to be. First, I did it a couple months before covid hit, so there was that. But there have also been many other moments in the past 3 years when I've looked down my arm and caught sight of the tattoo, and remember. And honestly, it really is comforting.

 
I've been leaning heavily on that bit of tattooed wisdom again these past few weeks as I first found a lump in my right breast, then waited for a mammogram and ultrasound, got whisked into a biopsy, and then got the call a week and a half ago (Wednesday, July 12) that yes, indeed, I do have breast cancer.

 
And then there was more waiting to figure out what that would mean for the coming weeks/months/years head. It's a LOT of waiting. The past couple weeks have possibly been the longest of my life.

 
Here's what I know so far: I have Invasive Ductal Carcinoma (IDC), which is the most common type of breast cancer. So far it looks to be localized (hasn't spread to lymph nodes). It's "triple-positive" which means the cancer cells have hormone receptors for estrogen and progesterone, and produce extra of something called her2 protein (this one is a bit more rare, about 10% of IDC are this subtype). This is a bit of a mixed bag, but one positive is there are great targeted therapies for cancers with those characteristics.

 
I met with my surgeon and oncologist a few days ago (I like them both, and got a kick out of finding out that my surgeon and rheumatologist are friends). The plan for the next few months is that I will start a chemotherapy regimen called TCHP. I'll get the chemo infusions six times, once every 3 weeks. The first infusion will be in a little over a week, and if everything goes according to schedule I'll finish sometime in November.

 
I'm also getting more testing done (MRI, genetic screen, etc) to get a better picture of what we're dealing with, and that will help us figure out what will happen next (eg what kind of surgery options I'll have, and what further kinds of chemo and/or radiation I'll need).

 
How am I doing with all this? That's... a hard question to answer. I'm mostly ok? It's definitely a lot to take in and process. I feel confident about being able to beat this thing, but am not looking forward to a grueling few months/year+ of getting there (since, given the ER/PR status it will mean taking hormone therapy for many years ahead to keep the cancer away once it's gone). I'm really, really grateful for a great network of people who care a whole lot about me and are doing everything they can to support me.

 
It's been a whirlwind of doctor visits, scheduling appointments, researching and taking notes and trying to organize information, and getting stuck by many, many needles. I'm trying to do what I can to prepare for the weeks and months ahead. But I'm also trying to consciously enjoy fun and light things when and where I can.

Hence, this morning getting a fun haircut I've been debating for months but hadn't been brave enough to try... There's nothing quite like knowing you will lose all the hair on your head in a few weeks to prompt you to try something new.