Finally losing my hair

 It started coming out in the shower tonight, so I'll probably clipper it down again in the morning to avoid additional shedding. I had wondered when it would happen! Turns out, treatment 2!

I went in today to get an injection that helps with my white blood cell count. It has some very silly brand name. Apparently it can cause bone pain, but taking Claritin can help with that (a nurse mentioned it yesterday but it wasn't mentioned at any other time, so I mention it here in case any of you ever find it helpful). I haven't experienced the bone pain, and I take generic Claritin for allergies, so that's lucky!

I overdid it on chemo day and no one was surprised (not even me)

So for the first chemo treatment, I walked to my partner's house afterwards (it's only three blocks away and many people scolded me) and then I napped for like 5 solid hours. This was great. I didn't feel great but I mostly slept through it, so when I got home, I was tired, but it wasn't too bad.

For the second chemo treatment, I did call my partner come pick me up rather than walking (yay!) I scheduled a meeting for about three hours after I got done (boo!), because I wanted to get it out of the way before the holiday. The meeting went great and I regret absolutely nothing. However, this means I slept for maybe an hour between getting back and having a meeting, and then I didn't really go back to sleep much after that (maybe another hour, a lot of time lying on the floor with an ice pack).

Complicating all of it, the second chemo medication was given at a faster rate than the first time, and I experienced a little sensitivity to it (not dangerous, and I could have asked them to change the rate, but I was like "yes! faster!") and the downside to that was it felt like my nose was burning a little and I got a headache. I was also on my period. I will never not be mad that I have to be on my period while also having chemo. This is stupid. It's too many things.

In addition to all of that, every chemo treatment builds. So my expectation is that each one will get harder, and I will feel worse each time, and it'll take me longer to bounce back to feeling better, even with the steroids and the anti-nausea meds.

Anyway, there are many factors as to why I felt worse yesterday than I did after the first treatment. But mostly, I need to not schedule anything after chemo. After chemo is a time for me to rest, and revisit my ongoing dream of being Darth Vader's Dirtbag Friend, in which a beleaguered Darth Vader is constantly lending me his space car and I'm always bringing it back 1. damaged 2. full of snack wrappers 3. never fueled up and I DO NOT MENTION ANY OF THESE THINGS but I do say thank you. Anyway I don't know why this is the recurring Star Wars dream I have now, but I love it. This is a healing dream. I need to just go in on this, instead of "trying to be exceptional at my job" (which is going to happen anyway, it's fine). 

Anyway, I've been confronted with the limits of my body! It's nothing new. I have a bad back and migraines, so I have been confronted with these limits before. I like to say "I am not my body" because it sounds cool, but what I really mean is "I am not just my body." That said, my body is pretty important, and the way it feels is inescapable to me, the person who dwells within it. I would compare my discomfort yesterday to a mild migraine, in terms of "feeling bad across a number of axes but not TOO bad, didn't throw up, DID believe I would probably feel this way forever." (A thing about migraines is when they are happening I always think that they'll never go away despite so much evidence to the contrary. And then when they go away, I'm shocked and delighted. Like a child.)

My partner drove me home last night and took care of everything around the house -- fed and medicated cats, cleaned litterboxes, brought trash and recycling containers in, etc, spent time with the cats so they got attention, checked on me -- and I took a shower and went straight to bed. I woke up at 2 a.m. feeling much better.

Having gone through the entire day, I would say that last night was a little like the night you might have after you've had way, way, way, WAY too much to drink and your body is like "what did you just do to me? please drink water, lie down, get an ice pack, let's try to get all of this out of our system as quickly as possible." And I mean, basically I'm getting a big dose of poison to try to kill the cancer, and the hope is that I'm strong enough to get through it relatively well. So far so good. You might be reading this and going "This doesn't sound that great, what are you talking about," and what I will say to you is that I used to drink Mad Dog 20/20 in college (parents, don't look this up). And amaretto sours. I have definitely felt worse. 

I debated writing about this because I know that any time I admit that I'm not feeling great, people get really worried. Please remember that I am going through chemo because I have cancer. I am going to have lots and lots of days where I don't feel great. It's built into the equation, and there's no getting around it. It doesn't change my attitude at all. I'm here, I'm grateful, I love seeing all my medical professional folks, I feel good about my treatment plan and my future, and I'm going to continue to do things in the world even as I have days that aren't so great. 

I will take it easy on chemo days from now on, though. I can learn this one thing. But when I'm feeling good, I'm going to go for bike rides! You'll never stop me! Ha hah!

Before I forget: A lot of people I know peripherally (not close friends, maybe former co-workers or spouses of friends or social media friends) have reached out to give me advice based on their lived experience with this process (either as patients or as care providers). Not always specifically breast cancer, but health concerns, other types of cancer, etc. I appreciate this so much. With every conversation I feel less alone, and more prepared for the things that are coming. As I have said before, there is community everywhere you turn. It's really a lovely and remarkable thing. I'm so lucky to have this. 

Second chemo treatment: Accomplished!

I had my second chemo treatment today. Apparently all of my bloodwork has looked great, levels are where they need to be, and based on the questions they ask (about side effects I did not experience like bone pain, mouth sores, changes in the way foods taste, sleep disruption, etc), I seem to be doing pretty well so far!

They switched the long-lasting anti-nausea medication to something that I did not have an allergic reaction to (success!), and start to finish, I think I was only there for a little over 3 hours. Last time it was closer to 5, so that's pretty neat! 

My doctors and nurses are all fantastic, I sit in a comfortable chair that has a heater and a massage function and I had a pudding cup (vanilla) and a generic gelatin snack cup (strawberry), and even tried the coffee (it was ok, not amazing, but not bad!). 

I'm a little tired now, so I'm probably going to rest for a couple of hours. I did not walk to my partner's house from the hospital this time -- so many people yelled at me for that last time! Today it was 100 degrees out, so I didn't think it would be the best choice for me. I will admit this very grudgingly. 

So that's it! I'll continue to update with how I'm feeling after this treatment. The first treatment went really smoothly, even with the little hiccup of being allergic to some medication. So far it's been some very manageable nausea, a little headache while getting one of the medications (that went away after about 20 minutes), some fatigue (which has been better since I started being more active but that might have also coincided with timing. I don't have enough data to confidently say that it's definitely because of my bike rides, but maybe!) and that's it. No changes to how things taste, no changes to appetite, I don't sleep super well but that's mostly the fault of the cats (I do sleep well enough and I'm keeping normal hours so I haven't gotten out of cycle on that SPECIFIC FRIEND WHO THINKS ABOUT THESE THINGS). It's good!

Adventures in the world

Yesterday, I went to a little Mexican restaurant on the Westside (they had very cute patio tables and they weren't busy) and had an incredible barbacoa street taco, a breakfast taco, and some aguas frescas (there was a pineapple one and a watermelon one). When I went to pay, the owner said "Can I ask you a question?" and I said yes. "Is that a port?" and then he explained that he knew it was a port, because his wife had just finished chemo and was going to be doing radiation next. We talked for a bit, he talked about how he encourages people who are going through it to just keep going, and to stay strong, and I told him how grateful I was for all the things that had aligned in my process. I told him I hoped his wife's treatment continues to go well and she recovers fully and quickly. They're going to pray for me. It was a very nice little moment out in the world, where having cancer isn't a secret, and there's community to find everywhere you go. 

Friday morning update: Not bad, a little weird

I read a thing a while back that said about ten days after chemo, you'd feel a little bit like you had a flu. They have made it very clear to me that if I get any sort of fever, I need to go directly to the hospital, so I was curious about this description. How can you feel flu-y without having a fever? Well, the mystery has been solved. I personally feel overly hot and sweaty and a little gross, but my temperature is totally normal. (I don't even feel that bad, I'm just VERY sweaty.) It's wild! I'm happy to not be running a fever, and I guess it's good practice for the future. My medical oncologist also mentioned that chemo can kick some people into menopause, so that could also be happening! Bodies are an eternal mystery. 

No nausea this morning, which was great. I am getting better about making sure I eat before I go to bed (empty stomach seems to be a big problem for me when it comes to feeling less good). They even suggested keeping snacks by the bed, which...I am a person who only eats food in designated areas of the house, so I can't even consider this as a solution yet. We'll see if things get harder!

I'll probably go for a little walk later, but I'm having a nice, quiet morning. 

Little update, doing well

Hello! Since my last post, I had another morning where I woke up a little nauseous, ate some food, took anti-nausea meds, spent some time on the couch with an ice pack and then felt better, then this morning I woke up and felt fine!

I had my check-in yesterday where I talked to one of my doctors and they did labs to see how I was doing (this is where they check my white blood cell count, platelets, a ton of other stuff) and checked in to see how I was feeling. It was a quick visit, and they scheduled my next chemo appointment for Thursday the 29th!

I rode my bike to the store again today and it was great. I also ordered a cool new helmet from a place called Thousand Bike Helmets. Their goal is to save a thousand lives with helmets. I think they have done it. (Always wear a helmet when you bike, friends. Always always always. Please. Wear seatbelts in cars, wear helmets on bicycles.)

Oh I also had a little announcement to share, in non-cancer-related stuff! https://licensinginternational.org/news/shena-wolf-joins-ko-media-management/

I'm having the weirdest year but it's good.

I did not feel great this morning but that is OK!

I have been very lucky so far, feeling pretty good in the mornings, dealing with some tiredness but nothing too severe. Yesterday, I pushed it. I did a little bike ride, I did a long walk, I had too much dinner (it's better to eat small meals spaced out when you're going through chemo, apparently), and at the end of the day I was tired but in that way where you're sore and you can't sleep well. It was fine. It was a nice reminder of all the stuff I did!

This morning, I woke up and felt just slightly not great. It wasn't bad, and I have anti-nausea meds for this exact reason. I took them (I am trying to stay ahead of bad feelings, so if I start to feel even a little bit bad, I take medication instead of waiting to see if it gets worse), I spent some time on the couch with an ice pack, I had a little coffee and a little breakfast, and I felt better. 

Then I walked to the post office to send back a radon test a friend of mine wanted me to do, and then I walked to the library to vote. 

I am currently drinking ice water and considering lunch. I'm feeling pretty good.

Boring days are still good days. 

On calculated risks and being alive (but mostly: bikes!)

When I was first diagnosed with cancer, which was not very long ago, my ob-gyn (who I have been seeing for nearly 20 years) reached out to me to say that cancer doctors were going to be focused on my cancer, and it was up to me to remember that my life wasn't just the cancer, and that there were many things that made me happy that I needed to remember to engage with as a way of staying healthy and happy as I went through this process. 

This came up today. I should explain that where I live, it's currently sunny and hot and very summery. Today is a holiday, so there aren't many people out, lots of people are doing yard work, and you can hear birds and squirrels and kids yelling playing outside. It's nice. 

I got an ebike in spring of 2022, in part because I wanted to rely less on cars, in part because I love biking, and in part because I missed having a convertible, and having an ebike seemed like a good way of getting some exercise, traveling efficiently, and experiencing that feeling of sun and wind. After getting the ebike (which I absolutely love, and would recommend to anyone thinking about getting one, and if you want recommendations I have several but briefly: Aventon has some great entry level bikes, I personally have a Charge City bike and I love it, and Terns are BEAUTIFUL and if you wanted to fully replace a car with an ebike, that's how you could do it), I started biking more in general. I have a really lovely road bike (a 2014 Raleigh Capri with Shimano 105 components) and if you've ever had a bike you loved to ride, you'll know that going anywhere on it is a joy. So last year I started biking everywhere. If there was an errand within 5 miles, I was definitely biking. If there was a patio hangout within 10 miles (and eventually 13 miles), I was biking. I got very familiar with how to get around my city on a bike, I felt good, I loved it. 

I will also mention here that sometimes I would push it, and I'd hit gravel, or I'd bike in high winds, and I'd end up falling. This is not a huge deal if you're a healthy person, most of the time! But as a person who is now going through chemo, this is a problem. I'm not going to heal the way I used to, so I need to be more careful. Initially, I decided that being more careful meant I just wouldn't bike. I assumed I'd be tired from chemo to the point where biking wouldn't even really seem possible. But today, I felt good, I needed groceries, and I wanted to bike. So I did it! 

The store is just a mile away down side streets, and there's very little traffic. It made me so happy. I have biked down mountains and I wasn't as happy as just going a mile to and from the store to get a half gallon of milk. (I also got strawberries. I can still have fresh fruit, I just have to be sure I wash it really well. I don't know if you've had summer strawberries on a hot day, but they're pretty special.)

I think if I have enough energy to bike around a little bit, I'm going to do it. This is that ephemeral "the rest of my life" that I hadn't quite understood when my doctor was telling me about it. I'm going to ride my bike sometimes, I'm going to do it as safely and carefully as I can, I'm going to get strawberries because they look good and they're on sale, and I'll wash them and mitigate my risks wherever I can, but I want to enjoy this time. Beyond that desire, I know it's possible. And so I'm going to do it. 

Maybe I won't feel as good later, and that's all right. I don't know how any of this is going to go, and I'm learning every day how I respond to the drugs and how I can manage my energy levels and when I should be taking meds to prevent nausea, etc. It's a constant process of discovery. But today I decided that I didn't need to stop doing something I loved just because I needed to be so, so careful. And that was the right choice for me. I'm so grateful for that 30 minutes of just biking to the store and back, feeling the wind and the sun, getting a little sweaty, eating a bowl of strawberries, and drinking a glass of ice water. I feel very alive. Because I am. 

Brief post-chemo update

 This is more for me in the future than for any of you, but day of chemo: very tired. Took a four hour nap. Day after chemo: Felt totally normal. Second day after chemo: TIRED. I think I may have mistimed my meds (I wanted to go to bed early but I was supposed to be taking anti-nausea meds every 8 hours and I think there was a 10 hour window between pills and that didn't help me). Third day after chemo (today!) I feel fine! It's nice.

Worth nothing that the second, third and fourth days after chemo, I take steroids and anti-nausea pills on a regular schedule. So we'll see how I feel when I hit tomorrow and I don't have those supportive meds. 

First Chemo Treatment Accomplished

I had my first chemo treatment today, and it was pretty uneventful! There's a lot of waiting while they wait for labs to come back (to see how you're doing, to make sure you're healthy enough to receive treatment, to make sure you're not pregnant -- I take pregnancy tests ALL THE TIME now and it's extremely tedious). I also had a meeting with my medical oncologist, who is great, and her nurse, who is even more amazing and answers my many, many questions about the process via the online portal for the hospital. I ask a lot of questions.

In the infusion area, everyone works with a nurse, and each nurse is managing several patients. They're very busy, and they're very nice. They put you in a little bay with a comfortable chair (with heat and massage functions), a little television, a curtain to draw if you want more privacy, and there's a snack station nearby with jello and pudding and assorted cracker and granola bar-type snacks. They also have very small cans of Shasta, juice, and probably some other stuff. I only mention all of this because a lot of people asked me about the snacks so I know this is a thing that the people want to know!

My course of medication for the day was one drip with steroids and one kind of anti-nausea medication (sort of immediate-acting stuff) and then a drip with longer last anti-nausea medication, meant to carry me through a couple of days.

As an aside: In the chemo teach (in which a nurse talks you through the process and answers any questions you may have), it was made very clear to me that if I had a weird reaction to any medication at any time during the process, I should 1. say something 2. expect a whole bunch of people to run over. Can you guess why I'm mentioning this?

That's right! When they started the second IV with the longer lasting anti-nausea medication, I felt a tightness in my chest and it felt a little hard to breathe. So I mentioned it, and they stopped the feed and EVERYONE ran over while assuring me that there was nothing to worry about (I am upsettingly chill about this whole thing and that mood continued throughout this process). Ultimately they decided to handle the longer-term anti-nausea with pills I will be taking every 8 hours for the next few days, and an IV of a different anti-nausea medication at the end of the treatment. I was very, very happy that this didn't derail any of the rest of the day. 

The chemo meds did not cause any weird reactions for me. There were two different medications I received. The first was doxorubicin, nicknamed "the red devil" because it is red and apparently it SUCKS. It can cause mouth sores, so sometimes if you suck on ice while you're getting it, it helps. So I did that. It was fine. It comes in a large syringe, and a nurse pushes it over the course of about 15 minutes while checking for blood return (what this means is they stop the feed, see if they can pull blood back through the IV, and this indicates that the line is where it needs to be and the medication is making it safely into my bloodstream). The second medication I received was cyclophosphamide, and that was just a normal drip. It took about 30 minutes. No issues. I drank a small Shasta cola and hung out.

After all of that, I got an IV injection of some anti-nausea meds, and I got to leave! I had arrived at the hospital around 8:30 in the morning, and I was done around 1:30. It felt a little bit like being in a very weird spa. 

I was supposed to call my partner to come pick me up but it was nice out and I felt ok so I walked over to his house and then everyone got mad at me (just kidding but there was a small amount of outrage about this). Then I took a FOUR HOUR NAP. 

Anyway, I feel fine for now! I've taken my anti-nausea meds for the night, I'm going to go to bed soon, and we'll see how I feel tomorrow! For the next three days, I'll be taking anti-nausea meds on a schedule and steroids on a schedule, so I would imagine I'll be feeling pretty all right. After the first few days, we'll see. I'll keep you posted.

Countdown to Chemo

I start chemo on Wednesday, so this is the last normal night (where my day tomorrow will be a day that I am familiar with, vs a day where I start a treatment that historically is very hard on bodies). I hadn't considered how strange it would be to have this little countdown. Do I take advantage of the last normal night to have a drink? Do I do something special? These are things I hadn't really considered until a little earlier, and where I've landed is "drinking a non-alcoholic beer and watching a baking show on TV with the cats." This is a very normal night. It's nice. 

I have had a number of moments since my diagnosis where I've thought (and sometimes said out loud): I want to remember how nice this moment was, how normal this weekend was, how lovely it has been to spend this time with the people I love while I'm still feeling good and doing well. I don't want to take this for granted. I want to tuck this memory away so I can revisit it when things aren't going as well, to remember that I will have these moments again. 

I am sitting in a comfortable chair, the weather is perfect, and I am having a lovely evening in my home with my cats. I feel good. I'm grateful to be in a position to go through these treatments, and I'm feeling optimistic about my future. 

Bone Biopsy Results Are Back and They Are Good

Bone biopsy results came back clear! The cancer has not metastasized, and so we can begin chemo (and continue with the very aggressive treatment plan) with the hope of totally clearing it out. 

This is a solid start to the weekend.

I got a bone biopsy and it wasn't that bad

Yesterday, I had a bone biopsy. This meant light sedation (awake but very relaxed), no unclear liquids after midnight (black coffee is a clear liquid and I am so, so grateful for this), couldn't drive myself to or from the hospital, etc. The biggest challenge is not accidentally doing the normal things I would do out of habit (mostly: eating breakfast). 

I've had a number of regular biopsies, and I don't enjoy them because the numbing process is painful and unsettling, and then I'm sore for several days after. They're fine. I'm happy to get them done. They just aren't any fun. I expected the bone biopsy to be worse, because it's a bone biopsy, but actually it was a little easier! For one, they were able to use my port for the first time to do a blood draw and then set the IV for the medicine I'd be getting during the procedure. 

The port is awesome. It means I don't have to get stuck in my arm for any of that stuff. There's already an access point. This was the first time it was used, and the nurse walked me through everything she was doing so I'd know what to expect. It's very cool. It's a little bit like being stabbed in the chest by a LARGE pushpin when they put the needle in (not bad! just unsettling!), but in future visits, I'll have had time to put some numbing cream on it so I won't even feel that. It's taken more than a week for me to get used to the sensation of the port under my skin, but I'm finally feeling pretty normal about it and getting to see how it works was really cool.

The main things about the bone biopsy (they were trying to get a sample from a lesion on my spine) that the nurse and doctor mentioned was that I shouldn't feel anything (aside from movement. pain is not normal, movement and pressure are normal, as the other biopsy surgeon liked to repeat) but I might hear some weird stuff. "I might have to use a mallet to get the needle into the bone" and "there is a very small chance of spinal column injury but it's extremely unlikely" are not sentences anyone wants to hear, but it went very quickly (shockingly quickly, to the point where I was like "What, really?") and I didn't even really hear weird stuff. I was very relaxed, it didn't hurt at all, and I am feeling good today. My back was sore for the afternoon, but it was more like a muscle tightness than anything else. The biggest challenge was getting the original dressing removed and putting a band-aid over the spot by myself. It's very difficult to do when the spot is in the middle of your back and you are using a mirror as a guide! But I did it. 

The results should be back in a couple of days. The biggest concern is that they missed the lesion and just got regular bone, in which the results will be inconclusive. But everyone seemed confident that they'd have everything dialed in to get the samples needed. I'll update when I have more information!

A quick aside about work and cancer and "feeling normal"

As I mentioned in the first cancer post, I left my job in February, and I have been looking for a new one that will be interesting and challenging and fulfilling in the ways I know a job can be. I've found some good stuff, I've gotten pretty far in some interview processes, but I haven't landed anywhere. And that's ok. I've done a little contract work, I've done a tiny freelance project, and I've been actively looking, and interviewing, and working with outplacement coaches, and redoing my resume (so, so many iterations! so many!).

I'm on unemployment, which necessitates at least three work search activities each week. One of the questions they ask you as part of this process is "were you able to work every day this week?" and the answer so far has been "Yes." I don't anticipate that changing, even after treatments start. The work I do is primarily editorial, and can be done on a computer from anywhere. Part of me thinks it's strange and foolish to not just step away from the work stuff, to take a break from thinking about this uncertain future, but the rest of me wants to keep things as normal for myself as possible, for as long as possible, since there will be SO MUCH that is not normal.

There's a lot of mental tension around knowing things are going to be different but not knowing how they will be different, wanting to keep as many of my routines as I can, not knowing what I'll have to give up, etc. Even when I think I have a schedule, it can change if new information comes to light. There's so much uncertainty. 

After the MRI results came back, I spent a couple of days thinking about what my life might look like if my cancer had metastasized. It was an interesting exercise, and one I have encouraged my parents NOT to do, because why would you worry when there's not yet anything to worry about? We all handle things differently. What is interesting for me to consider is devastating for them. I don't think about these futures because I'm worried. I try them on for size. I check with myself to see how I feel about these possible paths, because maybe it'll help me prepare for news when it finally arrives. I ask myself, if I had five years, would I feel cheated? No. You can do a lot of things in five years. If I had less time, it would still be enough time. Any amount of time is enough. 

Most of the time, though, I consider that maybe I'll go through all of this and come out cancer-free, and then I'll have time and health, and my future will be just as much of a mystery as it is right now. And I don't want to put the work of being alive and navigating that unknown future on hold for the months of treatment ahead of me. And so, I continue to look for work and think about what I want to do with whatever amount of time I have.  

A bone biopsy is in my future

I've got a bone biopsy scheduled for next Tuesday morning! I'm very, very excited that they were able to get it scheduled so quickly. This does continue to push chemo back, but I will simply cope by eating spicy foods and ordering undercooked dishes and appreciating how everything tastes normal to me right now. 

I'll continue to put updates here, so if you message me and I am super tired of going into detail about what's going on (because I go into everything here on the blog!), I'll just direct you to the blog. That's why I'm doing the blog. Please. If you wonder how I'm doing or what's going on with my schedule, it's going to be here!