Sharing life w/Metastatic Breast Cancer. Broken Neck Recovery. Retired Runner. I like to talk about Health, Books, Art, Music, Shows & Standup Comedy. Mom to an Autistic Young Adult. Canadian.
Hey! Iām Sasha! I started this ābrain dumpā 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 āall things runningā, too.
šFrom Canadaās West Coast. šØš¦
Please know that I really appreciate you coming to check my blog out. Iām 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 āthink out loudā moments here, too. š 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 Iāll be happy to answer the best I can. ā¦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 š
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)
My Feelings on the Spread of Health Misinformation, Conspiracy Theorists & Theories
Last Thursday, the kid and I went to the mainland. We walked a lot. Then hit a few video game stores. We spent the night at a motel. I wasnāt expecting much but it was nicer than anticipated. We will probably stay there again if the need arises. It was reasonably priced and fairly central. The attached restaurant was also pretty good. Much better than what it used to be (an old Best Western).
I got to visit with one of my good friends for a few hours and then the next day, I visited with my sister. I also had to go to my doctorās appointment. I normally only get 10 minutes with him but he spent over a half an hour with me.
Anyway, it was a quick, whirlwind trip but it turned out pretty good.
The kid and I came back late on Friday night and she spent another night with me. Early Saturday morning, I had to strip and make her bed up because my friend from Regina was going to be visiting for a few nights.
Once we cleaned up, I took the kid home in an Uber and I met my friend at the mall in Victoria.
We ended up going to the museum where thereās a new ancient Egypt display.
Afterwards, we headed to Beacon Hill Park for Icecream and to visit the petting zoo.
My friend and I chatted a lot. Iām worn out from all the yapping. lol.
Yesterday, we ended up going to Butchart Gardens then the Butterfly Gardens, too.
They have a flamingo there thatās a year older than me (born in 1975).
Anyway, when we got home, we talked some more and I ended up super wired. I didnāt sleep great last night. Hopefully, tonight will be better.
My friend left this morning to head back home. Iāve been busy cleaning bathrooms, disinfecting everything, stripping the beds and doing more laundry.
Itās going to be a busy week of events and I have another friend coming out Friday evening to stay with me for the weekend.
My pain hasnāt been that bad. Probably because Iāve been so distracted.
Itās been a good week. š
Iām going to take a quick shower and head out for a nice walk to the cafe. How hot it is outside will determine which one I will go to. lol.
Went for about a 6.5km walk, today. I only took Tylenol but I did have to take 2 short breaks. The kid and I also ran some errands this morning. Altogether, I did over 16,000 steps.
I talked to a doctor that works at a local non profit that specializes in cancer care. She was really nice and compassionate. She didnāt have much for advice for me other than referring me to a dietitian but we had a nice chat. Iām still dealing with some remnant gastrointestinal issues and my blood sugars are slightly elevated as a side effect from all the drugs. The weird thing is that itās very random. There are days where I ate very carbolicious and it doesnāt affect anything but then there are days where Iāve eaten nearly keto and things spike. Theres no rhyme or reason. So Iāll be seeing a dietician in August. Just because I have cancer, doesnāt mean I have to give myself heart disease, too. In the meantime, Iāll be documenting everything I eat and my side effects (if any). The doctor also suggested getting acupuncture to help with pain and inflammation (and suggested one). Unfortunately, itās very expensive. We do have a school in the city that offers it at a very reduced rate thatās overseen by registered acupuncturists/instructors. I will see if I can connect with someone there.
One of my good friends called me on the phone and we chatted for an hour.
This evening the kid and I had some fun playing on an old Nintendo DS Lite. We played Sonic the Hedgehog and The Sims.
It was a good day. My mental health felt like its starting to bounce back.
The kid is staying with me until Saturday morning. Tomorrow, I have a few more errands that I have to do in town and then weāll be going for a cheap lunchā¦ probably a slice of pizza at Whole Foods.
On Monday night, I did a lot of research around MAID (Medical Assistance in Dying). Everything around the paperwork needed to all the steps involved. I think doing this was my trigger into a downward spiral for the next few days...
On Tuesday morning, I went for a walk into town. Then decided I would go sit in on a Catholic Church mass. I hid in the back trying not to be noticeable so I could sneak out without needing to talk to anyone.
After, I cried. I cried and cried for hours. The tears just kept streaming. By 3pm, I was exhausted but I had a therapist appointment online I had to get to. I knew I needed it. We talked about a lot of things but one of those things was around spirituality and what happens after we die. I also talked about how the Catholic Church doesnāt approve of MAID.
I felt a little better afterwards.
Yesterday, I dropped in on my comedy class over Zoom. I havenāt been there in about 6 months. I just stuck around for an hour. We did our check in where I was able to give them an update with my health. I didnāt have any jokes to tell but I got a few chuckles from others. Then I left and headed out for a little walk and a coffee at Starbucks. I was still feeling like I was dragging my ass and my mood was sitting at a ādown-in-the-dumpsā level.
When I got back, I had another therapist appointment over the phone. This time, I felt much better when we finished. So I think I got out everything I needed to. Having 2 therapist appointments on back-to-back days isnāt usually recommended, but it definitely helped me.
It was nice to talk a little bit about the fact that ānothing is written in stoneā around my cancer care. If I suddenly had some sort of epiphany or revelation and decided to go back on treatment, I can. Nobody is going to judge me for that (in fact, I know a few people that would probably be very happy about it). I just donāt particularly want to - but the option is there as long as my body is healthy and capable enough to handle it. Of course, Iām always wrestling with whether itāll do anything while coping with the awful side effects. I donāt want my quality of life turn into garbage, again.
I started writing last night for the first time in a while. It felt cathartic. I also wrote a very extensive book outline for my breast cancer ājourneyā.
I requested all of my progress notes from my doctors at the cancer agency for the past 6 months and they arrived yesterday in the mailā¦ holy crap. There was a lot. I started to read a few and it almost felt like I was reading someone elseās medical chart at first. I felt really disconnected to it. It was weird. Iām glad I have the notes incase I need them for reference for my future care, if needed. Theyāre also good info for my possible āfuture bookā.
Anywayā¦ changing gearsā¦ āļø
For the last few days, Iāve been attacked by mosquitoes. Itās weird because I donāt think Iāve had any mosquito bites in a few years. They decided to go right around my ankles and lower calves. They itch like a mofo. I use Aveeno anti-itch cream and it barely takes the edge off. I ordered some stuff to make natural bug repellent with essential oils. I used to make my own many years ago when running along the dikes. (This is when Doterra and Young Living were at their peak.) It worked great as long as I reapplied every hour or so. Of course, whenever I hiked in the mountains, I would use OFF! or something that contains DEET. (Essential oils do absolutely nothing to ward off black flies.) I do have a family/childrenās insect repellent that contains less DEET but Iām trying to stay away from anything with chemicals. If the essential oil concoction that I create doesnāt work, Iāll move onto the āhard stuffā.
It looks like it may be cooler today. We have some overcast. My Mom and I will be going for a walk in a few hours together. My pain levels have remained the same - where Iām taking a Tylenol and 1mg of hydromorphone, 2-3 times a day.
The side effects that Iām still fighting from the last infusion are body aches, headaches, fatigue/tiredness, dizziness and bloated/stomach/gastrointestinal issues. Theyāre all getting better but itās been definitely a process. I know the first time it took just over 4 weeks to recover - but while my side effects werenāt as severe as last time, they still seem to be dragging on for the same amount of time.
Tomorrow, Iāll be visiting the kid and weāre planning on doing some things together. Not sure what they are yet - but hopefully itās fun.
My Aunt & Uncle came over for dinner this evening. We had a nice visit together with my parents.
I went to bed and was wondering what was happening. Lots of boom, boom, boom sounds. I even texted my Mom inquiring what the heck she was doing upstairs. She and my step Dad were in bed, too. š³
Okay. Do we have ghosts in the house?
This place is too new to have ghosts. š
Then we finally figured out it was the fireworks happening in Port Angeles commemorating the 4th of July celebrations.
Iām glad I wasnāt losing my mind.
Happy Independence Day to my American šŗšø neighbours.
Picked up some groceries. Did some house cleaning.
Iām still tired. My neck still hurts. Took 2 pain pills, again. I donāt know why I feel so guilty about taking pain meds. 2mg of hydromorphone is hardly anything compared to other cancer patients I talk to - and my body is in way rougher shape. I do whine a lot more than they do, though. š
My sister came out over the weekend to visit. We went to Butchart Gardens.
It was a nice day. We also had some nice meals together at various restaurants over the weekend.
My sister decided to bring her new boyfriend without telling anyone. This is after I told her specifically that I didnāt want to meet him yet. Nothing against him - I just wanted to spend time with my sister, first.
He stayed at a hotel about a half hour away. My sister stayed with me the first night then left and stayed with him on the second night. I felt like most of the weekend was spent talking about their new relationship. When I say new, itās like extremely new - 6 weeks new.
The day before she came out for her visit, she sent me flowers and an apology note for the way sheās been acting. She also gave me an extravagant gift when she arrived. I know sheās trying to manipulate the situation with money/gifts. Unfortunately, this is predictable and I wasnāt surprised. I did tell her I was feeling hurt about the fact she couldnāt come on her own for a couple of nights nor even stay with me for the whole time. ā¦but she stared blankly at me and didnāt respond. It would be one thing if she called or visited all the time but I havenāt seen her in almost a year. Anyway, it is what it is. We did meet the boyfriend and he was fine. We had a nice brunch together and then I took everyone to the aquarium for a tour.
Afterwards, we dropped them back at the ferry. Then my parents and I went to a little petting zoo at the honeybee farm and then a long walk.
Despite my sisterās weirdness, it was still a nice weekend and I enjoyed it.
Iām choosing to focus on the positive.
Today, I went for a decent walk. I did over 14,000 steps. I still have to take a few breaks but thatās the longest Iāve walked since before my last infusion. When I got home, I called my 96 year old grandmother to check in. Sheās turning 97 at the end of July and Iām trying to arrange to see her for her birthday.
My energy hasnāt recovered yet and I expect itāll take a few more weeks to fully get back to my ānormalā. Iām also dealing with neck and upper back pain. Had to take 2 pain pills, today. I havenāt been drinking enough water lately so I suspect thatās contributing. (Along with stress, inactivity, sleeping weird and I did stress my neck pretty bad a few weeks ago.)
Anyway, itās been a busy week - a lot has happened but itās been good for the most part. I do have an appointment at the cancer agency tomorrow to get my port flushed but thatās the only appointment I have for a while aside from my therapist appointments to keep my crazy reeled in. Iām supposed to see the kid for lunch which will be nice, too.
Tonight Iām planning on doing some guided meditation and drinking more water.
The kid and I out on a mini walk today to the cafe.
Iām stopping cancer treatment.
Iāve decided after a long chat with my kid, Mom, oncologist and my palliative care doctor, it is time to discontinue the chemotherapy. For good.
My side effects got progressively worse over the past week and Iām just done.
For the amount of my time that is being swallowed whole by these horrendous side effects (and āeverything medicalā), itās absolutely not f*ckinā worth it. Even if these treatments are lengthening my life, itās not by much. Not enough to warrant continuing. The trade-off is not acceptable.
Family and friends checked in more this time, which was nice. However, they kept asking me if this treatment was any better than last time. Yes, itās significantly better but last time was straight up f*cking torture. Canāt even compare the two. However, my quality of life is still looking like the bottom of a garbage can.
So, Iāve officially decided to discontinue cancer treatment. For the time I have on this earth, I want to enjoy it with family, friends, having fun, making connections and enjoying myself. I canāt tell you how relieved I felt making this decision. Yes, I have many other emotions and will get into those later but for this evening, Iām going to scrunch them up into tiny balls and store them for later. Iāll open them up when Iām with a counsellor.
I already had a swim in my parentās pool and my Mom is making us dinner. I also just downloaded next monthās book club book: The Frozen River by Ariel Lawhon and Iām looking forward to listening to that this evening.
So far, the side effects from the chemo havenāt been as severe as last time. Iām still eating āfairlyā normally (still quite bland) and while very tired, Iām doing more. Yesterday, I even walked to the cafe. It was sunny and hot out.
I sat and had a few cups of my favourite āangel waterā tea as well as a slice of vanilla strawberry cake. It didnāt upset my stomach so that was a bonus. When I got home, I even did a little water jogging in my parentās pool for 10 minutes - 2 times with a break in between.
Last night, I had another terrible sleep. My anxiety went through the roof. My heart rate dropped again (like last time) and then my neurosis took over. So I took my watch off and still took an Ativan. It was only 1/2 dose but I didnāt want to take more and make things worse. I have an appointment with a doctor at the Pain & Symptom Clinic at the Cancer Agency on Wednesday. Iāve already booked HandyDart. Going by last time, my side effects peaked on the Wednesday after my treatment so theyāll see me at my worst. If thereās anything theyāre worried about, they can send me to the hospital (next door) for tests.
Iām going to be doing an online meditation shortly with our local Cancer Non-Profit Agency. Then my mental health worker is calling me at 1pm. Iām going to continue hydrating frequently well. Iām also taking additional electrolytes. My ears are ringing really bad (which I know is a side effect as well). Itās driving me nuts. Anyway, Iām doing my best.
Itās overcast but pretty warm out, currently. Hotter than yesterday. If I have the energy, I may walk back up to the cafe later for a cup of tea. Otherwise, Iāll just have one at home and listen to my audiobook.
I requested they do it over 90 minutes again like the first time. (Usually, subsequent treatments are 30 minutes.) Iām trying to throw everything into the hat for symptom management. Iām not sure it does anything but itās worth a try. Usually slowing IV treatments down can help with immediate side effects (not necessarily delayed ones like mine).
The kiddo met me prior for breakfast. I had pancakes.
I also took her to the bank because she needed a cheque to be deposited.
We even got some other things done like emails, texts and setting appointments that she needed help with.
I feel bad because I just donāt have enough time with her and so many things are put on the back burner. Her current support worker finally just stepped up to cover more hours while waiting for her second support worker (who went on a LOA over 6 weeks ago), is away. Luckily, sheāll be returning in about 3 weeks.
The kid will be coming out on Wednesday to stay with me for a week. If this treatment goes like anything like last time, Wednesday will be my most horrible day. The kid said she will come and be by my side, clean and do whatever I need her to do. I know this is not only the case as sheās autistic and can be very challenging to communicate with sometimes, but I believe her heart and intention is 100% in the most compassionate place. So Iāll act with grace and gratitude and see how this goes. Iām not always the nicest person when Iām sick as a dog, writhing in pain so this will be a huge test for me as well. Iām staying hopeful that all goes well - especially with my dose reduction and new medications.
Anyway, I woke up with my hair a bit on the scruffy side. I contemplated a haircut for about 4 seconds. š
Tomorrow is my last 2 volunteer health coaching calls. I thought they were last week but I recalculated and was wrong. They both had 1 more. So, I will be wrapping those up. Theyāre both very lovely people and Iām not complaining in the slightest, but I do need some time off. I hope to return in September, pending my health stuff. If Iām still not stable, Iāll make the decision to āretireā at that point.
There are so many things I miss doing that I hope to get back to. The 2 biggest ones being comedy and running.
Iāve faced the fact that running is an absolute long-shot BUT stranger things have happened. All I need is about 6 months (give or take) of my hip bones healing rather than going the other way. It could happen. It could not. Time will tell. For now, Iām trying to still walk as much as I can when my body allows. Walking is awesome for health. No shade to the walk - but f*ck, manā¦ itās just not the same. lol.
As for comedy, I have a few barriers with that.
1.) 95% of comedy shows are in the evenings and thatās really tough on me.
2.) Most comedy shows are on the mainland. Itās hard for me to travel there and takes even more energy out of me.
3.) The comedy program Iām part of focuses heavily on writing jokes about mental health. That feels a bit shitty at the moment. Iām having a hard time finding the funny in my situation. I know itās there, but it definitely feels ādelicateā right now.
Note: #3 is my biggest barrier. I know if I get through that one, the other 2 will start to feel easier and Iāll feel excitement over dread. Iāll get there. Maybe not right away, but hopefully in the foreseeable future.
Anyway, Iām feeling really tired, spinny and moderately nuts right now. The darn steroid does that to me every time. Iāve already done some dumb little things today without thinking. The biggest one is buying 3 delicious scones and a cream puff at the bakery, today before my infusion. When I got home, I put the beautifully sweet scones in a container to seal and eat at a later date to prevent them from going stale. However, I was going to eat the cream puff. I was looking so forward to that damn cream puff. But what did I do? I crushed up the slimy box, threw it in the garbage. I noticed the garbage was pretty full so I tied it up and put it outside in the garbage can. Then I came back in. Where is my cream puff? F*ck. Fuckity. F*ck. F*ck. I threw it out. Dumb. Dumb. Dumb. Sad. Sad. Sad.
So I ate a scone, instead. Wasnāt the same. š Boo.
Anyway, time to take some Ativan to combat these steroid jitters. Then finishing my audiobook.
If you got this far reading, Thankyou so much for continuing to follow along my story. I hope you have a lovely weekend. š
PS: Iāve put together a āwalking playlistā below - all Canadian šØš¦ music + all artists Iāve seen live at some point (some multiple times). Not ranked in any particular order. Except for Nickelback. They go to the bottom. š (I saw them just once because they opened at the Juno Awards in 2009.) Iāve seen many more bands but Tumblr only lets you tag 10 songs so there may be more playlists in the future. š
I did another decent walk into town. I switched up my playlist today and listened to mostly 70ās tunes. I noticed I didnāt walk as fast as when I do listening to EDM or other dance music.
When I got home, I vacuumed, mopped floors, did laundry, stripped/washed/made my bed and did some overall tidying.
I sorted out all of my new medications (for my treatment tomorrow) and put them into my phone (Apple Health) so I can keep track of when I take them.
I got mail from the Cancer Agency today informing me of my next appointments with my oncologist, port flush (which I probably wonāt need) and a lab requisition. Hooray. I feel so relieved that I donāt have to chase down anyone (this month) for this stuff.
I wrote an easy meal plan and put it on the fridge so I donāt have to think about what to eat when Iām recovering. I know I wonāt feel like eating at all but I figured thatās all the more reason to put something together. Otherwise, all Iāll do is chew on crackers. I washed a pile of grapes and chopped up some cucumber. Aside from a few days where I couldnāt eat anything, those were the only 2 fresh green items I could get down for almost a week. Everything was repulsive. Even bananas and applesauce were too strong for me to eat. Everything tasted overpowering. Except potatoes. All I wanted to eat was mashed potato. lol
I also wrote up a āMental Health Toolkitā which requires varying levels of effort depending on how anxious or sick I am. Everything from audiobooks and needle felting to using a cool compress on the back of my neck and putting on a guided meditation. Then I laminated the list because Iām fancy like that. I put it in my medication/medical box next to my bed.
Iāve arranged for my mental health worker to call me on Monday afternoon to check in. Then I have my counsellor from the cancer agency calling me on Wednesday afternoon. I also have an appointment with the pain & symptom clinic doctor on Wednesday morning. HandyDart will be taking me there and back. (If Iām too sick, I can change it to a phone call.) I have a few friends that will also be checking in with me over the next week as well.
Tomorrow, the kid will be meeting me for breakfast and then sheāll be accompanying me to my infusion at the clinic. (Last time, I went alone.) I have to take a bus there and an Uber home. My parents are away for work again but hopefully theyāll be home tomorrow night.
So thatās it. I think Iāve done everything I can to prepare for this round. I hope between the lower dose and extra drugs, it wonāt be as bad as last time. Iām really, really praying this will work.
Iām going to have a light dinner and relax for the rest of the night.
Today, I walked into town, again. It felt good. After some decent walks and nice weather this week, Iām feeling a bit happier. I also have been back to eating pretty normal again, which helps. Only took nearly 5 weeks.
My tumour markers went down 5 points. This doesnāt sound too exciting but after the last few tests (where they went up a total of 27 points), it was a welcome sight. I feel a little encouraged that this treatment could be working. Officially, itās too hard to know at this point.
Iām not sure what the deal was today, but everywhere I went, people were either walking 3 or more abreast and blocking sidewalks or theyād be walking in front of me and just stop all of a sudden. Then theyād stand there staring at their phone - again, blocking the walkway. I know itās trivial but it drives me nuts.
I remember running along the river dike when I lived on the mainland and cyclists would ride their bikes 3-4 across and would practically run me over. I had no where to go. I guess they wanted me to roll down the embankment.
Anyway, just another pet peeve I needed to rant about. Ha.
I really miss running there. Iāve only been back once since Iāve moved. I need to make a plan to visit this summer.
I especially miss the bears.
I do not miss the coyotes.
Hereās some old photos of the area. (Poco Trail System.)
Thought youād enjoy a creepy photo of yours truly.
Today I walked into town to get my labs done. I did about 14,000 steps.
My lab results are already back and everything is good and normal. My tumour markers will be in tomorrow but I imagine theyāre not great as theyāve been trending up and Iāve only had 1 treatment of this drug so far. It usually takes 3 infusions/months before they start to drop. Sometimes more.
My bone scan results were also released on my portal and it showed stable.
I had a really nice visit with my neighbour friend. We had tea and chatted for nearly 3 hours.
For the next few days, Iāll be cleaning and getting things ready for my next round of chemo. Iām hoping with the dose reduction, things wonāt be as rough but unfortunately, thatās not always guarantee. So as always, Iām preparing for the worst and hoping for the best.
The kid will be calling me shortly and then Iām going to watch something mindless like funny cat videos or something.
I left this morning for a walk to clear my head from the sadness and grief triggered by my sister. I wasnāt 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 wonāt take as much stuff with me.
Saw lots of bunnies.
Then I walked along our local seawall.
I canāt believe I did over 20kmās. Iām very sore and tired, but Iām 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 āI feelā 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. š
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. Itās been over 24 hours and I still havenāt heard anything. Iāve seen that sheās been logged into Facebook numerous times, liking and commenting on other peopleās stuff. So thatās all I needed to know.
So, I blocked her. š Thereās nothing she can say or do at this point to make up for what sheās done. It hurts a lot and Iām grieving our relationship. She was my best friend. Now, I donāt 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 ā¦but for now, I donāt want to think about it.
On my walk, I was listening to a pretty funny book called, āSorry, Not Sorryā by Mark Critch. Thereās also quite a bit of interesting Canadian history. Iām over half way through and really enjoying it so far. I laughed out loud a few times. If youāre Canadian, you may find it entertaining. šØš¦
I already had a shower and made myself an early dinner. I think Iām going to find something funny to watch.
Here Iām wearing my new Terry Fox hoodie. All proceeds go to cancer research.
Itās 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.
Then we had an awkward conversation:
Him: āIāll take the dose down to 80%ā
Me: āNo, youāll take it down to the max.ā
Him: āUh. I canāt really do that.ā
Me: āSure you can.ā
Him: āWell, if I take it down to the lowest (which works out to be about 60%), you wonāt be able to go back up again.ā
Me: āFine by me.ā
Him: āAre you sure about this?ā
Me: āIāve never been more sure about anything in my life.ā
Him: āOkay, Iāll do that.ā <pause> āIs that your real hair?ā
Me: āYes.ā <pause> āI would not choose this as a wig.ā
Him: āI meant the colour. Itās looks very distinguished.ā
Me: āThatās something every woman wants to hear.ā
Him: āWell, I meant regal.ā
Me: āEven better.ā
Him: āOkay, I meant it looks awesome.ā
Me: āThatās better.ā
-lol š omg-
Anyway, Iām not very excited about doing this treatment, again. I did tell him that I was considering hospice and it felt like he was encouraging me to take that route. Heās never done that before. There is usually another treatment to try (which there is) but Iām exhausted from these side effects and I still donāt feel anywhere close to being āback to normalā.
Then I asked him the magic question:
Me: āHow long will I live if I stopped treatment now?ā
Him: <clears throat> āUh. You know bone only disease is a slow, painful death right?ā
Me: <nods> Also me thinking: āWhat the fuck, dude.ā
Him: āI would estimate about 18 months. Could also be a year or 2 years but I donāt really know. Depends if there are complications.ā
Me: āSo how long could I live if I continue to take this drug?ā
Him: āOverall median survival rate is an additional 9 months.ā
Me: š¤Æ
This is where the hard decision is coming in. I feel like Iām living at the hospital, at appointments, labs, the phone, sending emails, tracking down paperwork, advocating for supports and on top of all of that, recovering from treatment side effects - so I can live maybe an extra 9 months-ish?
So much stress and sickness for hardly any benefit.
Honestly, Iām getting to the point where I just want to live out the rest of my life without all the medical crap. Iām not giving up. Iām just really tired of my life being overtaken by cancer. The next treatment (Paclitaxel) that theyāve offered requires me to come in weekly. It causes other symptoms like neuropathy and heart issues. My oncologist isnāt very excited about giving it to me. He said itās usually pretty tolerated but he has also said that about the last few drugs. I got the impression that he thinks I should just go live ā¦and enjoy the rest of my life.
This past month has been really hard on me. I donāt know what to do. I think Iām going to end up going to my treatment this week at the new lower dose (along with some additional drugs for side effects) and see what happens.
I had a really good chat with my Mom and my daughter about stopping treatment and they both support me 100% with whatever decision I make. They, of course, want me around as long as possible but theyāve also seen how hard these past 6+ months have been on me. Iām so tired - mentally and physically. One of my good friends will be calling me tonight to let me bounce some ideas off of her. Sheās pretty level headed and one of my few friends that are very pragmatic and wonāt let emotions get in the way.
Iāll see how this plays out. I donāt have to make any decisions today.
I spent some time picking up shells at the beach close to me and painted them. Put them into shadow boxes. It was a fun little craft that got my mind off of stuff.
I also started painting a few canvases. Just mindless stuff. It was fun and I plan to do more painting over the weekend. I have a few audiobooks on the go as well. I hope to get them finished and will do a review in the next few days.
Anyway, I also have some family drama with my sister. With all of my recent health stuff, my patience is worn into a very thin nub. She has hurt me so badly and I donāt know how itās even possible to mend this relationship, anymore. For me, this is saying a lot. I am someone that doesnāt throw away relationships. Especially with my sister who was supposed to be my best friend - but she has been justā¦ awful. I wonāt get into particulars because thereās been just so much. The problem is, Iāve let it all go and now there has been a straw that has officially broken the camels back. Iām super resentful, hurt and just flat out disgusted. I canāt let it just continue like thisā¦
I think Iāll be writing a long letter.
I need her to know why Iām so upset. Unfortunately, I can never pin her down on the phone. If I do, she allows 64738291 interruptions to happen on her end. Sheāll text me sometimes to ask how Iām doing and then I reply but she never responds. So Iāve given up on that. After asking her to come visit for the past 6 months, she finally told me sheās coming out next month for 2 nights, but staying at a hotel nearly 45 minutes away and is bringing her new boyfriend who Iāve never met. So of course she wonāt have time nor will I be able to discuss anything serious (with him around).
Soā¦ I guessā¦ letter it is.
While Iām at it, maybe Iāll write a letter to my Father as well.
For now, Iām going to watch something mindless and make a light dinner. Today, I did get out for a walk and ran a few errands. Tomorrow, I have a couple of volunteer health coaching calls that Iāll be wrapping up.
On Monday, I went for a little walk to the cafe and fell. I still have no idea wtf happened. I know my left ankle rolled but I donāt know why that caused me to bail like a sack of potatoes. Iām still feeling a bit weak, I guess.
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 didnāt care either way. Iām just glad I didnāt 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 Iāve decided to hold off. If Iām consistently in pain for weeks, Iāll consider it.
Yesterday, I had a doctor from the Cancer Agency go over a new drug protocol for when I do chemotherapy, again. I wonāt be getting treatment on Friday as originally planned. Iāll be seeing my oncologist (in person), next week to talk about when Iāll be starting back up again. Heāll likely take the dose down 20% first. Then, Iāll probably feel like crap still and heāll have to take it down to 50. I really donāt want to even try it again. I feel grossā¦ but I donāt 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 Iāll 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, itās fine. My tumour markers went up another 7 points. Iām not worried about it as it hasnāt been enough time for the chemo to really do itās thing, yet. Itās also not as big of a jump as it was last month (20 points). So, Iām 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 thatās 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, Iām taking the kid to meet her new doctor in person. Sheās then taking me for a belated Motherās Day brunch. Afterwards, I have to go back to the hospital for my bone strengthening infusion. The kid will be accompanying me and together weāll take an Uber back to my place and sheāll be staying with me for a few days.
Thereās been so much medical crap to deal with this month. Iām hoping the kid and I can do something enjoyable this weekend.
Last night, my Mom and I went to see the Grapes of Wrath concert. It was really good. Theyāre a local (Vancouver) band that have been around for over 40 years. I canāt believe I havenāt seen them live until now. Aside from feeling tired and dealing with persistent acid reflux/indigestion from dinner (chemo has destroyed my stomach), I had a really great time.
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 didnāt think in a million years I would have needed to brought my ear plugs. But, I should have.
Limblifterās 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. (Iām 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, thereās no way I couldāve gone. Iām 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, Iām hopefully going to go for a little walk to the local cafe. I have things I need to do ā¦butā¦ itās the weekend. Iām going to try and just take it easy. Happy Saturday.
