Hey, it’s Sasha

Hey! I’m Sasha! I started this “brain dump” in May of 2021 to record my treatment through my stage 4/metastatic breast cancer diagnoses and neck rehab from pathological fractures.

I have written over 700 posts and have since gone on to discuss other topics that come up in my day-to-day life such as chronic pain, fitness, mental health, art, shows, music, writing, comedy, books + the adventures of parenting an autistic kid (who is now a young adult). Before cancer, I was an avid runner and still love to talk about “all things running”, too.

📍From Canada’s West Coast. 🇨🇦

Please know that I really appreciate you coming to check my blog out. I’m hoping some of it educates and brings awareness around living with metastatic breast cancer.

Note: My stream of consciousness tends to grow legs and run away so you may witness some of my “think out loud” moments here, too. 😜 I also try to stay away from anything political but be aware that it may seep in once in a while.

I use the #metastatic breast cancer hashtag for majority of my posts. If you're new to MBC or are supporting someone with breast cancer, please feel free to reach out with any related questions and I’ll be happy to answer the best I can. …or if you want to chat about running. (Any excuse to talk about running is welcome!)

Here are a few direct & resources:

Cancer Resources & Supports (*BC or Canada-Wide)

Low Neutrophils and Ideas to Raise Them (before labs)

Mental Health Resources (*BC or Canada-Wide)

A Message To: Newly Diagnosed Breast Cancer Patients 💕

Two Year Anniversary C-Spine Surgery Post

20 Journaling Prompts

An Evening of MBC Storytelling (my part is around the 37:30 mark)

My comedy set with Stand up for Mental Health.

Wildfire Magazine: "An Evening of 'Body' Stories" 2024 (my part is around the 29 minute mark)

I left this morning for a walk to clear my head from the sadness and grief triggered by my sister. I wasn’t expecting to be out that long. I did take breaks along the water and stopped at a cafe halfway through.

The bag I was carrying was too heavy and it was really hurting my neck. Next time, I won’t take as much stuff with me.

Saw lots of bunnies.

Then I walked along our local seawall.

I can’t believe I did over 20km’s. I’m very sore and tired, but I’m pleased that I did it. I guess I just had to be put in a state of despair to push myself that far.

Yesterday, I ended up writing a private message to my sister who has hurt me badly. I wrote it from the heart using a lot of “I feel” messages. I also explained to her more thoroughly about everything that has been going on with my health. I can never pin her down to talk to her over the phone or in person so I had to do it over a f*cking Facebook message. 🙄

I sent a copy of the message to my Mom first. It put her into tears. She said it was very well written and emotional. (This made sense as I was in tears when I wrote it.) If it were me getting that message from my sister, I would have been contacting her instantly to work things out.

I saw that she read it within minutes of me sending it. It’s been over 24 hours and I still haven’t heard anything. I’ve seen that she’s been logged into Facebook numerous times, liking and commenting on other people’s stuff. So that’s all I needed to know.

So, I blocked her. 😔 There’s nothing she can say or do at this point to make up for what she’s done. It hurts a lot and I’m grieving our relationship. She was my best friend. Now, I don’t even know who she is anymore. I am hurt, disappointed, heartbroken and just flat-out dumbfounded by her extreme lack of empathy and compassion. One of these days I might elaborate more …but for now, I don’t want to think about it.

On my walk, I was listening to a pretty funny book called, “Sorry, Not Sorry” by Mark Critch. There’s also quite a bit of interesting Canadian history. I’m over half way through and really enjoying it so far. I laughed out loud a few times. If you’re Canadian, you may find it entertaining. 🇨🇦

Here I’m wearing my new Terry Fox hoodie. All proceeds go to cancer research.

It’s been a very busy week. Lots of appointments. The hardest one was with my oncologist. He agreed to postpone my treatment another week. He said I can re-start next week Friday.

I tore up my knee and leg pretty good. One of my favourite pairs of lululemon pants were completely shredded. I was about 2 minutes from the cafe when I fell, so I gathered myself up and went to the washroom to clean my wounds and the dirt off me. Then I walked into the cafe with my ripped up pants/leg and still got myself breakfast. Nobody said anything. I didn’t care either way. I’m just glad I didn’t break anything.

I had a CT scan on Monday night. The radiation oncologist called me today saying that everything is stable. I was considering getting radiation for pain control but I’ve decided to hold off. If I’m consistently in pain for weeks, I’ll consider it.

Yesterday, I had a doctor from the Cancer Agency go over a new drug protocol for when I do chemotherapy, again. I won’t be getting treatment on Friday as originally planned. I’ll be seeing my oncologist (in person), next week to talk about when I’ll be starting back up again. He’ll likely take the dose down 20% first. Then, I’ll probably feel like crap still and he’ll have to take it down to 50. I really don’t want to even try it again. I feel gross… but I don’t want to give up.

I also went in for X-rays of my hips and femur as I had to go in for an appointment to see the orthopaedic surgeon this morning. He said everything still looks secure/stable. He wants to continue to follow up with me every 2 months. I said 3. So I’ll be seeing him again at the end of August.

I had some old lab requisitions and decided to get some bloodwork to make sure everything is okay. For the most part, it’s fine. My tumour markers went up another 7 points. I’m not worried about it as it hasn’t been enough time for the chemo to really do it’s thing, yet. It’s also not as big of a jump as it was last month (20 points). So, I’m seeing it as a positive that things are slowing down.

I had a ECG at the hospital today, too. I was supposed to have gone in 2 weeks ago but that’s when I was super ill and had to go to the ER, anyway. (The ER nurse gave me a ECG.) I still had my requisition so I figured I better get that checked, too.

I helped the kid with some errands after all my stuff was done.

Altogether, I did about 11,000 steps.

Tomorrow, I’m taking the kid to meet her new doctor in person. She’s then taking me for a belated Mother’s Day brunch. Afterwards, I have to go back to the hospital for my bone strengthening infusion. The kid will be accompanying me and together we’ll take an Uber back to my place and she’ll be staying with me for a few days.

The opening band, Limblifter, has also been around for decades and is local as well. I liked their act a lot less. Not because of them, but the sound was too tinny and hurt my ears. Their sound guy should be fired. I didn’t think in a million years I would have needed to brought my ear plugs. But, I should have.

Limblifter’s most popular song was Tin Foil and was on the very first Big Shiny Tunes compilation album (released by MuchMusic).

Anyway, the concert was pretty low-key and I felt a lot of nostalgia. Grapes of Wrath played all their hits and I sang along to a lot of them. They put on a great show.

I think the best part was the fact that everyone kept their asses in their seat. lol. (I’m tired of going to concerts and everyone stands. I know I sound old but I pay for a seat for a reason. lol.)

When my Mom and I got home, we had a cup of tea and chatted for a while about the concert. I think I finally fell asleep around 2am. I slept in until 9am.

Anyway, it all worked out. If the show was even a few days ago, there’s no way I could’ve gone. I’m so glad I was able to. Music is so great for mental health. I used to love going to concerts. Before the pandemic hit, I would constantly be going to them. It was one of my favourite things. Now, it just feels overwhelming.

Anyway, I have a few volunteer health coaching calls to do this morning. Then, I’m hopefully going to go for a little walk to the local cafe. I have things I need to do …but… it’s the weekend. I’m going to try and just take it easy. Happy Saturday.

I’m grateful that I was able to get out. My Mom joined me and we also went for a lovely lunch together. It was a good day.

Here’s a few pics from my walk.

The sun is shining. ☀️

I’m going to venture out for a walk with my walker today. I think my Mom may join me.

I’m finally on the other side of the post chemo sh*t show. That was horrendous and I never want to endure that again. I still have yet been able to talk to my oncologist. I don’t even have an appointment and I’m trying to track someone down for that. This is what happens when you get your treatment at a private clinic, I guess. You get even more lost in the system.

I’m able to get food down now. I’m still adverse to anything with more than a couple of spices. Cinnamon for some reason is really gross, too. My stomach isn’t quite back to normal and still burns after I eat. So, I stick to small amounts.

I’m still volunteering with the 1-1 health coaching. I’ll be wrapping up both my participants in mid-June and will be either taking an extended leave of absence or possibly “retiring” altogether. It’s been a very rewarding experience and it also paid a little bit too (which was nice for pocket money) but I still find myself having to do extra work, put in extra time and I also find myself thinking and worrying about it. Essentially, I’ve accomplished everything I wanted to do in the organization. They have been really good to me but I have been good to them. Anyway, I’ll see. For the summer, I don’t want to have any commitments. I also told the aquarium that I’ll be taking another leave of absence and they were totally fine with that. They said they’ll welcome me back whenever I’m ready.

I won’t be going to the book club meeting this month. I’m too tired. The book is also super friggin weird. It’s called Under the Eye of the Big Bird. If you’re into bizarre, dystopian, Japanese novels, this one’s for you.

I was looking forward to doing art therapy again every week but with this chemo crap affecting my health (making everything so unpredictable), I didn’t want to take a spot from someone else so I asked if they could put me back on the waitlist for the fall. I’m hoping that things will be figured out by then. Plus, like I said, I don’t really want any commitments for the summer. (Even if it’s just doing art.) I want to wake up and do whatever the heck I want. …aside from attending the usual appointments and crap.

Next week is chock full of appointments including my CT scan, hip X-rays, orthopaedic surgeon, radiation oncologist, ECG, labs, etc. My next chemo treatment is also scheduled but I need more time to recover. I also really need a dose reduction. Hopefully, someone follows up with me soon.

Yesterday, I could barely move.

Today, I managed to take a 1 minute shower and brush my teeth. I’m still very nauseated but it’s semi-tolerable. I managed to eat a 1/2 piece of toast and a few bites of banana this morning. I suppose that’s progress.

I feel so weak. I don’t know how I’ll be able to do this again.

I had a lovely Mother’s Day. Unfortunately, the kiddo hasn’t been well so we’ll celebrate at a later date. My parents and I went back to Butchart Gardens. I was even able to eat a little bit of soft serve ice cream in a cup. Then we went for a nice, slow walk around the gardens with my walker. It’s amazing how many new flowers that can pop up over the course of just one week.

This evening, my Mom and I got a beautiful delivery of flowers from my sister.

They are really gorgeous.

I was able to eat a little dinner together with my parents. Mostly mashed potatoes but I got down some salad and a mini piece of pork tenderloin.

I’m feeling very fatigued. I’ve had like 13 notifications from my Apple Watch that my heart rate has dropped under 45 bpm (as low as 42 bpm). I looked at my previous notifications and the last time my heart rate dropped that low was 3 days post last chemo (when I was on the Trodelvy). So, I guess this a normal reaction for me. I was able to take a shower and walked about 6,000 steps which is not much for “usual me” but it’s great for “post chemo me”. My average resting heart rate lately has ranged from 55-60. (So walking longer distances still helps cardio even if I don’t run, anymore.) I looked at the results from my echocardiogram online and they were normal. I did my home ECG (Kardia) and it was normal. My blood pressure is lower than normal (100/55) but still considered in the normal range. I don’t really have any other heart-related symptoms other than fatigue.

Yes, this is all boring medical stuff with a hint of neuroticism but I use this blog to log my metastatic breast cancer “journey” so I can look back on things and compare. It helps relieve anxiety.

I have some non-drowsy anti-nausea meds. I won’t be taking any medications that could cause my heart rate to drop further. Unfortunately, this may affect me being able to sleep much but it is what it is.

This week’s calendar is uneventful. Aside from a CT scan, I don’t have anything planned outside of the house. I have some appointments but they’re over the phone. I just plan to rest and maybe have some short walks. I’m on a very low dose of steroids so they help to get me out of bed. I’m trying very hard not to place any expectations on myself, though. It’s important to move in order to combat fatigue and help my mental health but so is pacing.

I just finished crying when I took this photo and no amount of filters can hide my red nose. 😢

This morning I had my first Enhertu infusion at the private clinic. It was a lot different than being at the Cancer Centre. All the patients were in a small room together. The one good thing is that there was 1 nurse for every 1 patient. That’s a nurse-patient ratio that I can get onboard with. 😊 There was also a big window I could look out of with lots of natural light in the room.

When they started hooking me up, I started balling my eyes out. It wasn’t for long, but it just felt like there has been such a huge build-up to this day. So many unknowns, stress …and now side effects. At the moment, I feel woozy and tired. When I stand up, it’s worse. So I’m lying down. Severe effects can hit anywhere from now to 10 days after the infusion. So I won’t be leaving the house much. I have a CT scan at the smaller/closer hospital on Wednesday evening that my step Dad said he can drive me to.

I was emailed about a bone scan appointment next week at 7am at the hospital in the city. I’m not going to that. They can suck it. I tried calling back to reschedule but it’s like calling into the twilight zone where there’s dropped calls and no answering services. When I finally got a hold of someone, they put me through to the wrong place. It’s infuriating. I won’t be confirming online so they will hopefully, call me back to confirm and I can reschedule then (maybe). If I don’t hear anything in the next few days, I guess I’ll try to cancel via the health portal. (Unfortunately, there’s no option to reschedule that way.)

I had a discussion with my oncologist about bone scans, anyway. I told him they are a waste of an entire day for me and just cause anxiety. I’d say 90% of the time the results are always mixed and don’t line up with my tumour markers or CT scan. …or even how I feel. I hate them. I’ve had probably close to 25 — and that means nearly 25 wasted days of my life. They’ve never made a difference in my treatment decisions, either. If a fracture was suspected in my situation, they’d just send me for a CT or an Xray, anyway. Sometimes, we just have to make executive decisions about our own health and what makes sense for ourselves. This medical system often feels like a conveyer belt and I’ve been just an obedient rider of it. Going forward, I’ll only go if there’s a strong reason to and whether it could change the course of my treatment.

Side note: I do think it’s very important to be scanned regularly in the beginning of a metastatic disease diagnosis to figure out the behaviour of the cancer. So if you happen to read this post and are new to metastatic disease, please listen to your oncology team and scan when they deem appropriate.

…and this is what happened. 😂

I used that crayola model magic clay. I had no idea in my mind what I was doing so I just went with the flow. After finishing his head, I thought to myself, I’m going to turn this into an ashtray because that’s what we made for our parents back then. lol. Neither of my parents have smoked in over 30 years but the thought just made me chuckle. Oh, how times have changed. Then, of course, “young Sasha” would want to give it a crown, some glitter and a name. I was watching Friends the other day again, so Gunther just popped in my mind. This project felt really silly but it was so much fun to just play. I highly recommend it. As adults, it’s so easy to get caught in the trap of wanting to dive into a project with “I have to make something good”. It doesn’t have to be. It never has to be. It can just be for pure fun and experimentation. Everyone totally loved my little weird monster but I certainly didn’t make it for anyone’s approval.

Yesterday, I was up and out of the house super early to get my labs done so the private clinic/pharmacy can get the results (knowing that I’m well enough to start) and ship out the treatment that I’m having tomorrow/ Friday. I met the kid and we went for brunch at Subway before I was called in. Then I took her for ice cream at Dairy Queen. After, I helped her grab a few things from the grocery store. She walked back home by herself.

I still had to wait around for my echocardiogram in the afternoon. While I waited, I met with a friend for a quick visit. She had come out from Regina for a memorial. I haven’t seen her in 2 years so it was nice to get a hug and catch up a bit before I had to race back to the hospital.

We met each other in 1999 in college. We took a “Commercial Floristry” program. (Aka: Floral Design). She sat behind me. We used to hang out a lot together. To this day, we still text each other on the regular.

In the meantime, I had got my results back from my labs which were all beautiful (except for 1). Best results in over 5 years. I guess that’s what happens when you stop cancer treatment for almost 3 months. Unfortunately, my tumour markers shot back up 20 points. That’s a lot in a month for me. So I’m glad I’m going back onto treatment tomorrow. I’m scared as sh*t but I know it’s time. Plus, my lower back and hips are really giving me grief and my pain is increasing.

Today, I’m picking up my meds at the pharmacy. I was thinking about getting a cannabis vape pen or some weed to smoke incase of nausea but I’m going to wait on that. This drug can cause pneumonitis so smoking anything isn’t ideal. I don’t want to take edibles either because it takes much longer to work and my response is too unpredictable. Once, I had too much THC in a cookie and ended up puking and shaking all night. Never again. Gross.

It’s been a good week. On Sunday, my parents asked if I wanted to go to Butchart Gardens, again. Of course, I wouldn’t say no, so I tagged along with them. It’s such a beautiful place to hang out for the afternoon. It wasn’t even that busy which was surprising for a weekend.

I’ve been also trying to get out for daily walks of a minimum of 5km’s. Often, they’re much longer but when I’m pressed for time, going the shorter distance still helps. That, combined with the beautiful weather, has been really great for my mental health.

Last night, was a different story, though. I didn’t even get 5 hours of sleep. At 1am I was still patiently staring at the clock. Then woke up too early and I could not get to sleep. I’m so tired. HandyDart is picking me up soon for the first day of my Art Wellness class. I’ve been really looking forward to it. Luckily, I get a ride home with HandyDart, too. I really hope it’s a quick trip home without too many pickups/drop offs.

After my walk yesterday, my oncologist called. He was very happy that I got approved for Enhertu - especially over the fact that my case has set a precedent for other women that fall into this “grey area” situation (like myself) to be approved in the future. The conversation went well, but shortly after hanging up, I felt super stressed - to the point where I felt sick. He went over with what’s to come for my treatment and what to look out for (in regards to serious side effects). …but in the process, he also freaked me right the f*** out and told me all the sh*t that could go wrong with this drug. Then shortly after, the pharmacist called and freaked me out more with other side effects. So my stress levels soared.

I joined an Enhertu group on Facebook to get more support and clarification from those who are actually taking it.

I’ve invested a lot of money in crap to prevent nausea and vomiting. Apparently, over 90% of women are hit with it and there is nothing worse than being green. I am not Kermit. 😂 For me, it’s actually seriously painful. I probably went overboard with the “preparing” but whatever. My oncologist said this particular thing alone has landed some of his patients in the hospital. Gross.

I’m tired of going into these treatments just “hoping for the best” and I get completely sidelined. Obviously, I can’t prevent some of the super scary side effects, but I can control and prepare for what is more common.

Afterwards, I tried to calm my nerves by playing with some alcohol inks.

I’m not sure what I’ll be turning this into but it’s fun to experiment with. I did a few other pictures but they turned out like mud. It does have a bit of a learning curve to it.

Today, I went for a long walk.

I felt great after. Was a beautiful day for it. Took 2 short breaks. Also had a Tylenol and 2 pain pills.

I talked to my counsellor for an hour and it was a nice chat. I’m grateful for her support. I wish I could see her more often but unfortunately, she’s just so booked up.

One of my health coaching participants got her appointment time mixed up. We ended up having her meeting this afternoon (instead of Saturday) which is fine by me. Now my weekend is clear.

Last year I signed up for the Vancouver marathon. Yes, it was impulsive but I was doing well at the time and figured I could do it. Unfortunately, cancer is an asshole and I obviously can’t run it, now. Due to time limits, I wouldn’t be able to walk it either. It’s happening this weekend. I was thinking of hopping on the ferry to Van to just enjoy the day and then check out the health expo while picking up my race package including my shirt, etc. I figured it may be fun. Then I thought harder and realized that it would likely be more depressing than anything. So I applied for a medical deferral for next year. I don’t know what next year will look like for me but at least I have the option and I don’t have a shirt for a race that I didn’t run in. I have enough shirts. lol.

I had an early dinner and now having a cup of tea. I don’t feel like reading. Going to see what mindless show I can go watch. I may play online Crazy 8’s with the kid, later.

Also, there were a lot of bunnies out on my walk today.

I had to pick up a prescription and then I went for a London fog and a little treat at the cafe before my volunteer shift at the aquarium.

It was pretty steady and we were short one volunteer. So I was pretty busy the whole time.

I spoke to the volunteer coordinator to let him know I may be needing another extended break for treatment which he was totally fine with. Hopefully, I won’t but I’m not forcing myself in if I’m sick.

Our resident octopus was very active.

Then I met with her community support workers this afternoon about the kid’s goals and things that they can do to support her because omg I’m tired.

I still haven’t tackled my crap, yet. I’ve realized that it’s nearly impossible to get anything done when the kid is here. Anyway, this week is all about power-focusing. This stuff has to be done by the end of the week. I am not going into this next treatment with a giant “to-do” list. My last treatment was pure hell being under constant stress. Sure, a lot was out of my control and I’ll never be 100% prepared because sh*t happens but I’ve definitely learned a lot and will be preparing the very best I can. The only things that should be on my to-do list (going into this new chemo) is healing and self care. The biggest mental shift I’ve made is not assuming that I can still live a “normal life” with this new treatment. It’s unlikely. So in the meantime, I’m also setting up supports (especially for my mental health) so I won’t want to quit if this drug sends me to the bathroom floor for days. I’m also slowly putting together a self care plan and “mental wellness tool box” for those tough days. Which, from the sounds of it, will be a lot.

I got a giant patient package in the mail today from AstraZeneca and all about the new drug I’m going on. It sounds intense and scary. (But, there are times that I can be intense and scary, too. 😂)

Anyway, I haven’t heard when I start this new treatment but I’m sure it’ll be soon.