u/You-bettah-dont

Well, it’s finallly time that Marcus and the Twins leave for good. I’ve fought hard with Nova Scotia to get to this point, and I have the breast and plastic surgeons I wanted (HUGE relief). Still going for an AFC but found out I’m a candidate for DIEP if I want that later!! I went in today for my Molli seed placement, got a good look at the mammograms they did (they couldn’t fine my clips on ultrasound) and it’s just empty space where the Twins were in my armpit. Still could see Marcus, but he’s definitely shrunk so I’m hoping it’s just his dead, mummified remains that I’m seeing.

Everyone is like “are you freaking out? Are you scared?” And to be honest, I’m not. I think the thing I’m most worried about is anesthesia, but it would be the same if I was having a bad hangnail removed lol. Mostly, I’m feeling inconvenienced by the entire thing because I won’t be able to fall asleep on my stomach for the forseeable future (priorities, right?).

I’m so ready for cancer to NOT be my entire personality. I’m ready to get my path results because I’ve made peace with whatever they might be (Stage IIIc to begin with). I just want to get to the next phase. The weather is absolutely gorgeous here in Halifax, crisp and breezy. We splurged on a fancy hotel tonight- so I have the windows wide open and am listening to the sounds of the city. And I had Japanese cheesecake for dinner. Yes, that’s it. Dessert for dinner :)

Also I wrote a little song for the event (sung to ‘if youre happy and you know it, clap your hands):

If your boobs are being bitches cut them off!

If your boobs are being bitches cut them off!

If your tits are being jerks, and no longer worth the perks…

Then your boobs are being bitches, cut themn off!

I used to like the girls quite a lot

I used to like the girls quite a lot!

But then they started making threats, like disfigurement and death

My boobs are being bitches cut them off!

Love all of you tonight!!! I hope everyone is cozy and happy and I’ll see you on the flip side!!!

Xo, Sara

Another day, another post about the horrors of health care in this Province. I need help because I don’t know what else to do, and I’m running out of time. I’ve been fighting Stage IIIc Triple Negative Breast Cancer (the most aggressive type of breast cancer). I’m a wife, a mom, a friend, and I’m tired from fighting. I’m sad and angry. I need help and advice.

Below is the letter I sent to Michelle Thompson, the Minister of Health and Wellness. I have no faith that she’ll read it or anything will come of it. If you or a family member has faced this successfully, I would truly appreciate any help or advice. I’m removing personal identifiers because well, it’s Reddit, and my spouse is a physician (we actually moved here from the US to help with the shortage).

Please don’t be unkind in your responses. I’m very real and I’m already hurting.

Good Afternoon Ms. Thompson, 

I am contacting you out of desperation. I have Stage IIIc Triple Negative Breast Cancer and my double mastectomy plus lymph node dissection has been delayed past nine weeks from my last chemotherapy infusion. This is not only outside the globally accepted standard of care, but especially dangerous considering the aggressive nature of TNBC.

Globally, when the standard of care is met for locally advanced TNBC I would have  a 70%+ rate of 5 year survival. Nova Scotia clocks in just over 38% (and that’s including women diagnosed at Stage I and II). This is sobering data to digest when you’re trying to get the care you need. 

We moved here from the US in 2023 so my spouse, Dr. Xxxxx Xxxxxx could be part of the solution for the NS shortage of emergency physicians. They are currently the site lead for XXXX Hospital as well as an adjunct professor of medicine at Big NS University.

Sadly, physician and health care professional shortages and days off/vacations without locum coverage has caused multiple delays in my care and left me fighting for the globally accepted standard of care since the beginning: 

I noticed an axillary lump last November, brought it up to my GP and was told to take the wait and watch approach. Within weeks it had doubled in size. The mammogram date was 2027. Knowing I have level D dense breasts and a family history of breast cancer (non BRCA),  I asked my GP to give me an urgent referral for an ultrasound, but I was told I had to do a mammogram first. Eventually, this was scheduled for March followed by the ultrasound in April. Understanding that the faster the diagnosis, the better the chances of survival, I scheduled a private ultrasound through Why Wait Imaging in Halifax during the New Year holiday. 

This showed a spiculated mass in my right breast indicative of cancer as well as two enlarged axillary lymph nodes. Only when I brought these results to my GP did things start moving. I was diagnosed with Stage IIIc Triple Negative Breast Cancer in February and began treatment in March, around the time I would have been getting my initial mammogram.  It has not been easy- the initial treatment caused me to go into toxic hepatitis and the second line of chemo left me in the hospital for 6 days needing a blood transfusion. My genetics indicated a rarer mutation called Rad51D which raises my lifetime chances of developing new breast cancers and ovarian cancer to levels which require a double mastectomy first and later my ovaries and fallopian tubes removed.

For the former, I asked to be referred to a breast surgeon who worked with plastics for closure so that I could avoid the brutal scarring that often results from this type of surgery, knowing that any reconstruction for Nova Scotian women is around 6 years wait time. I wasn’t asking for anything fancy- just a flat closure and the hope I could avoid terrible scarring, asymmetry, and concavity. 

I met with Dr. Plastic (plastics) and Dr. Boobs (breast surgeon) and the surgery was eventually scheduled for October 7th, already outside of the ideal 4-6 week post chemo window. Last week, it was then delayed to the 21st- over nine weeks from my last chemotherapy. The data shows that this kind of delay includes a marked decline in overall survivability.

I’d like to point out that this has nothing to do with me, other than I asked for a plastic closure. My blood work and health have recovered to the point I could go into surgery today. Obviously, being alive trumps vanity. Deciding to forego a plastic closure, we asked if could I be scheduled sooner- the answer was no. (I’d like to point out Dr. Plastic gave Dr. Boobs multiple dates throughout September and October). 

I asked my local GP oncologist if they could give me an urgent referral to another surgeon and she said there wouldn’t be anyone who could fit me in.  I asked my spouse to run it up the flagpole in any way they could. My spouse reached out to my oncologist at the QEII and Dr. Boobs for help- three days to even get a phone call back last week. They agreed to send out an email to whatever surgeon that could perform the surgery. We haven’t heard anything. 

Additionally, I have not received any post-chemo imaging of my breast to show whether or not the mass responded to therapy, and the ultrasound of my axilla failed to locate the clip (the reasoning behind that was ‘maybe they weren’t looking in the right place’). Neither have been scheduled/rescheduled (we’ve asked). Again, I am looking at having to go private for an MRI/Ultrasound to locate the clips and guage my overall response to chemo. 

To say I feel disregarded as a human being fighting for her life is an understatement. I’m scared and I’m angry and I’m hurt by the system we came here to help fix. 

At this point, what can we do? The NSH patient advocacy tipline takes 21 days to review a case, with no guarantees they will act upon it. I am going to ask this week for an out of province referral, but nearly 4 weeks out from my last chemotherapy, I’m afraid that too will be too delayed to meet the 8 week statistical deadline.

I’ve looked into self-pay mastectomies in the US. It will cost us without US insurance anywhere from $18,000 to $50,000 USD. With my spouse taking a 50% pay cut to move here, we simply can not afford that. 

I realize that moving here meant delays in health care- but I was under the impression that meant non-urgent procedures like getting into an allergist or rotator cuff surgery. Not life/death situations like surgery for aggressive cancers. 

Please, don’t take this email as complaining. It’s not- I’m begging for help. I don’t want to die. I don’t want my aggressive cancer to have the chance to grow and metastisize from delay of treatment, something that is well documented in the literature. 

I’m scared and I don’t know what else I can do to advocate for myself. Please help me. 

Kindest Regards, 

FUCK CANCER

I’m going to cut & paste the email I sent to Michelle Thompson, the Minister of Health and Wellness in Nova Scotia. It explains only the broad strokes in the spirit of brevity, though I could easily write a long form article on the day to day fuckery of getting standard of care here.

Bottom line: I finished chemo Aug 17th and my double mastectomy originally tentatively Sept 14th, was rescheduled for Oct 7th, and now Oct 21st with a flat denial of bridging chemo. I have every reasonable expectation that it will be delayed again.

I’m thinking of posting it on the Nova Scotia sub because Canadian press loves nothing more than to call out Nova Scotian politicians on the absolutely shit job they do for women’s health (and they circle that sub like vultures). I do love it here otherwise, I’m just not ready to die at age 49. Before I do that, I’d love to get your suggestions if you have any!!! I’m kinda desperate here!

I didn’t include it in my email, but I’m really angry at the response we recieved when we asked my surgeons office if there was any other surgeon in the province who might have an earlier availablity because it IS outside the standard of care. The scheduling lady actually SCOFFED at my husband (along with being otherwise very snippy like we were wasting her time).

I tried reallly hard not to come across as a complainy janey Or god forbid a karen. I may have failed.

Good Afternoon Ms. Thompson, 

I am contacting you out of desperation. I have Stage IIIc Triple Negative Breast Cancer and my double mastectomy plus lymph node dissection has been delayed past nine weeks from my last chemotherapy infusion. This is not only outside the globally accepted standard of care, but especially dangerous considering the aggressive nature of TNBC.

Globally, when the standard of care is met for locally advanced TNBC I would have  a 70%+ rate of 5 year survival. Nova Scotia clocks in just over 38% (and that’s including women diagnosed at Stage I and II). This is sobering data to digest when you’re trying to get the care you need. 

We moved here from North Carolina in 2023 so my husband, Dr. Russell Xxxxxx could be part of the solution for the NS shortage of emergency physicians. He is currently the site lead for Fisherman’s Memorial in Lunenburg as well as an adjunct professor of medicine through Dalhousie.

Sadly, physician and health care professional shortages and days off/vacations without locum coverage has caused multiple delays in my care and left me fighting for the standard of care since the beginning: 

I noticed an axillary lump last November, brought it up to my GP and was told to take the wait and watch approach. Within weeks it had doubled in size. The mammogram date was 2027. Knowing I have level D dense breasts and a family history of breast cancer (non BRCA),  I asked my GP to give me an urgent referral for an ultrasound, but I was told I had to do a mammogram first. Eventually, this was scheduled for March followed by the ultrasound in April. Understanding that the faster the diagnosis, the better the chances of survival, I scheduled a private ultrasound through Why Wait Imaging in Halifax during the New Year holiday. 

This showed a spiculated mass in my right breast indicative of cancer as well as two enlarged axillary lymph nodes. Only when I brought these results to my GP did things start moving. I was diagnosed with Stage IIIc Triple Negative Breast Cancer in February and began treatment in March, around the time I would have been getting my initial mammogram.  It has not been easy- the initial treatment caused me to go into toxic hepatitis and the second line of chemo left me in the hospital for 6 days needing a blood transfusion. My genetics indicated a rarer mutation called Rad51D which raises my lifetime chances of developing new breast cancers and ovarian cancer to levels which require a double mastectomy first and later my ovaries and fallopian tubes removed.

For the former, I asked to be referred to a breast surgeon who worked with plastics for closure so that I could avoid the brutal scarring that often results from this type of surgery, knowing that any reconstruction for Nova Scotian women is around 6 years wait time. I wasn’t asking for anything fancy- just a flat closure and the hope I could avoid terrible scarring, asymmetry, and concavity. 

I met with Dr. Martin LeBlanc (plastics) and Dr. Lucy Helyer (breast surgeon) and the surgery was tentatively scheduled for Sept 14th, then rescheduled for October 7th, already outside of the ideal 4-6 week post chemo window. Last week, it was then delayed to the 21st- over nine weeks from my last chemotherapy. The data shows that this kind of delay includes a marked decline in overall survivability.

I’d like to point out that this has nothing to do with me, other than I asked for a plastic closure. My blood work and health have recovered to the point I could go into surgery today. Obviously, being alive trumps vanity. Deciding to forego a plastic closure, we asked if could I be scheduled sooner- the answer was no. (I’d like to point out Dr. LeBlanc gave Dr. Hellyer multiple dates throughout September and October). 

I asked my local GP oncologist if she could give me an urgent referral to another surgeon and she said there wouldn’t be anyone who could fit me in.  I asked my husband to run it up the flagpole in any way he could. He reached out to my oncologist at the QEII and Dr. Helyer for help- three days to even get a phone call back last week. They offered to send out an email to whatever surgeon that could perform the surgery. We haven’t heard anything. 

Additionally, I have not received any post-chemo imaging of my breast to show whether or not the mass responded to therapy, and the ultrasound of my axilla failed to locate the clip (the reasoning behind that was ‘maybe they weren’t looking in the right place’). Neither have been scheduled/rescheduled (we’ve asked). Again, I am looking at having to go private for an MRI/Ultrasound to locate the clips and guage my overall response to chemo. 

To say I feel disregarded as a human being fighting for her life is an understatement. I’m scared and I’m angry and I’m hurt by the system we came here to help fix. 

At this point, what can we do? The NSH patient advocacy tipline takes 21 days to review a case, with no guarantees they will act upon it. I am going to ask this week for an out of province referral, but nearly 4 weeks out from my last chemotherapy, I’m afraid that too will be too delayed to meet the 8 week statistical deadline.

I’ve looked into self-pay mastectomies in the US. It will cost us without US insurance anywhere from $18,000 to $50,000 USD. With my husband taking a 50% pay cut to move here, we simply can not afford that. 

I realize that moving here meant delays in health care- but I was under the impression that meant non-urgent procedures like getting into an allergist or rotator cuff surgery. Not life/death situations like surgery for aggressive cancers. 

Please, don’t take this email as complaining. It’s not- I’m begging for help. I don’t want to die. I don’t want my aggressive cancer to have the chance to grow and metastisize from delay of treatment, something that is well documented in the literature. 

I’m scared and I don’t know what else I can do to advocate for myself. Please help me. 

Kindest Regards, 

FUCK CANCER

Lying here staring at the ceiling and just realized- no one told me if I have to premed with dex for my first keytruda only infusion on Tuesday!!!!! I was assuming no, but also- this post chemo rebound inflammation had me wishing for some steroids hahahahah

Do I premed?!!!!

TIA!

I recently saw a video on social media that really stuck with me. A fairly well known ‘cancerfluencer’ was overwhelmed with the guilt of not being able to do everything because of the exhaustion of radiation. It absolutely broke my heart.

I wanted to reach through my phone and scream TAKE THE NAP!!! And wrap her up in a blanket and put her in a dark room and let the poor thing sleep.

As women, we have a ridiculous amount of societal and personal pressure we put on ourselves. It changes with age, family situation, etc.. be the perfect mom, the perfect friend, the perfect insert-title-here. Add cancer, and all of a sudden we’re ALSO expected to be these pink ribbon warriors. I’ve had more than a few heated conversations with my husband about managing his expectations vs the reality of treatment (and he’s a physician!). It’s absurd that we have to do mental gymnastics in order to give ourselves the permission to BE sick.

I really really get that most of us are scared- I know I am- a diagnosis is usually our first real brush with our own mortality- which brings the panic of ‘have I done enough? there’s so much more that i want to do’- which is so so so human, but for the love of god- take the nap. Slow down, give yourself time to heal, if you’re tired- sleep. Order the pizza. Forget about the laundry. Ask the school secretary about carpool options. You. Do. Not. Have. To. Do. Everything. Yourself.

Anyone who knows me would say “that’s rich coming from you Sara” and (giggles) it’s true. I’m the very worst about asking for help, but oh boy has TNBC humbled me. I was so sick during DCK chemo, that I really had no option but to crawl under a rock like a wild animal and hibernate through it. I was forced to take the nap, and in doing so I realized just how stupid it was for me to feel guilty about not running 5ks (I have NEVER run a 5k, but apparently the cancernet thought I should start training for one immediately wearing nothing but pink with a tutu to boot).

I don’t get it. This pressure we put on ourselves (and society puts on us) to be bouncy perfect cancer patients filled with toxic positivity. It’s like upside down world but only the worst of already existing pressures on women.

I’m not complaining, I’m not even venting- I’m sad and grossed out that so many women are sucked into this pressure of being the perfect cancer patient. THAT DOESN’T EXIST.

Being tired isn’t a character flaw. Side effects don’t mean you’re a bad cancer patient. Do some people breeze through? Of course- and I truly am grateful for that- no one chooses this and the “easier“ it is for someone, the happier I am for them. Absolutely we should celebrate our wins, no matter how small or big they are- but it feels as though there is always something MORE we should be doing and we should feel GUILTY if we’re not.

Being ‘good enough’- or worthy of rest- should never, ever come into the cancer conversation. I can only speak to TNBC, but we all know this is a slogging grind of endurance- and every endurance athlete will tell you how important rest is.

I just think it’s really important that we recognize our limits and set boundaries that put our healing and recoveries to the front. We have to be kind to one another, and we have to be kind to ourselves. Societal AND internal pressure that adds to our suffering because we’re not measuring up is just plain BS.

Go take that nap girl. Your body needs it.

Hi everyone!!! I hope you are all having solidly good weeks out there and that all news is good news ❤️

I met with Plastics yesterday and am so relieved that we’re going to try for an immediate Goldilocks reconstruction when I get my DMX next month. Obviously we’re not sure what he’ll be left working with, but we agreed that in the very least, he would do an AFC with the intention that we’d go back in to create breast mounds with fat transfer once I heal up and Rads are over. He will be working in tandem with my breast surgeon which I thought was pretty cool. He’ll mark me up pre-surgery, she’ll cut along those lines and preform the DMX, and then he’ll do what he can. Also- he offered to do a little liposuction on the edges if needed to prevent dog ears which I’m super psyched about. If someone tries to tell me they’re “angel wings” I will punch them.

Honestly, it’s a relief to get to this point. I couldn’t care less about having nipples or anything like that. Implants give me the jeebies when I think of having them myself (no judgement on anyone who chooses them, they’re just not for me). My hope is to wake up with perfect little soft A or B cups, but I also understand that surgery is surgery and nothing is guaranteed. I’m okay with flat, but I’m hoping to prevent any concavity (or I will straight up look like my dad Bob with my big ole belly)

So my questions are: Those of you who have had Goldilocks recons, how were your results? Are you happy with them? What were your complications? Did/will you need revisions? Did you have any issues with radiation afterwards? How did your healing go? Any advice? Anything to look out for?

Thanks in advance! I truly appreciate it!

xoxo Sara

Hi everyone! I hope your week was absolutely wonderful and filled with only good news. The bad news can suck it.

I just realized we all probably have found bits and bobbles that have really made a difference during our slogs through TNBC. From specific skin balms to nail strengthening nail polishes that deliver on their promises (I still need one of those). Scalp scrubs for our little bald heads or the very best most comfortable post mastectomy outfits. I’m sure more than a few of us have been inundated with influencers hawking $500 pillow systems or whatever- but what have YOU found???

What are your top finds (that ACTUALLY work)?

Please link to these products if they are available online (especially if they are from specialty stores). I’ll leave my list in the comments.

Cheers to all of you this weekend- I’m still so sorry we’re all here, but there’s not a group of better women I’d want to go through this with!

Much Love, Sara xoxo

Whaaasssuppp everybody- I hope you all are having an event free week, all scans are coming back clear, and it’s nothing but good news :)

I wanted to throw out a net regarding increased heart rates during AC chemo. It’s apparently a super common side effect, but I’m wondering what all of your experiences were/are.

Mine has surfaced a lot like POTS (which I had as a kid, but outgrew in my 20s). Resting heart rate is higher than before cancer coming in around 90 bpm and then bounces up to between 120-140 when I stand up or do anything remotely requiring physical effort (so I‘m using it as an excuse NOT to do anything right now haha shhhhh). Interestingly, my morning coffee doesn’t seem to have any increasing effect on it.

My docs don’t seem concerned, but have me keeping track. Chemo in general has given me a lot of palpitations, but my pre AC muga was nice and clear. I’m not too worried, but I know a lot of folks might be when first experiencing it.

So I thought a thread would be a good way to share our experiences with this common (but still surprising when it happens) side effect.

How did your doctors approach it? Did it cause any issues for you? Did it resolve once finishing AC chemo? Please share!

Love to all! -Sara

You are in Canada and are going through it- I wanted to ask if you are in the Maritimes because it’s a complete shitshow out here.

I tried to respond but my fat steroid finger might have hit the remove button (I’m a mod and those buttons are TINY). I can’t find it now on my dashboard to undo it. Maybe you deleted it yourself? Please come back!

I’m seriously thinking about starting an advocacy group in Nova Scotia unaffiliated with NSH. Because it’s basically third world out here when it comes to trying to get a diagnosis much less seeking a second opinion (they made me feel like I was asking them to raise the Titanic). Whereas the rest of the world has a 70-90% survival rate for Stages 1-3, We have a rate of 38%. FUCK THAT NOISE.

I’d really love to hear more about what you’ve gone through- and if you don’t want to post publicly, you are more than welcome to DM me. Xoxo Sara

It’s been a minute since I posted inviting everyone to chime in on whatever shitfuckey they’re currently dealing with- so please post if you want! This is a great way to vent about the little things that make us rage out. Did someone look at you weird? Did a registration lady give you shit about one of ordered tests being on the wrong letterhead? Is a friend or family member pushing ivermectin? Did you sneeze and poop yourself in public? Are you struggling with something utterly ridiculous and unnecessary? Sometimes all we can do is scream, and then laugh, and then scowl, and then take a nap (not necessarily in that order).

Also, no toxic positivity allowed. This is a post to VENT like you’re screaming into the void with every feral part of your being…. But hopefully also laughing and seeing the absolute insane absurdity of this slog called TNBC. Laughing is not a poor coping mechanism no matter how many therapists try to tell us it is. ITS A FABULOUS SURVIVAL METHOD and that is a hill I will die on.

I’ll go first:

Tomorrow is chemo number seven and I can say that without a doubt the very worst side effect is these f*cking HOT FLASHES. And somehow they’re just getting worse and worse.

I’ve lost all my hair, my eyes crud shut at night, I’m getting a DMX and because of my genetics I get to have my already retired ovaries ripped out. Surgeon says I should expect a full node dissection and followed by a month and a half of Rads. The bone pain? Worse than when I broke both my legs at the same time (but at least there’s dilaudid for that). My fingernails have fallen off. Mucositis is literally eating through my gums and exposing bone and tooth roots. My liver tried to bitch out and I ended up with steroid psychosis. My ANC literally, truly ended up at 0.0 and I spent a week in a maternity ward in isolation (yes it was totally weird). And my town is filled with tourists. I hate tourists.

BUT I WOULD DO ALL OF THAT TIMES TWO JUST TO GET RID OF THESE HOT FLASHES.

These are a million times worse than my actual menopause hot flashes.

I have true TNBC with zero hormone involvement. I swear to god as soon as they chop the boobs off I’m going to kidnap my MO and hold him for ransom until he gives me the OK to go back on my HRT (not really, but it’s tempting).

And the f*cking OFFICIAL CANCER ADVICE FOR HOT FLASHES?!@!!!

”wear layers” “switch to natural fibre sheets like cotton” “drink ice water” “do yoga” “eat less fat and sugar” “try acupuncture” and my fucking favorite: “talk to a therapist”

BITCH I’VE BEEN DOING ALLLL OF THAT SINCE I WAS 20 hahahahahah no but for real I have.

But the best one “Take an antidepressant like Venlafaxine”

BIIIIIIITTTTCHHHH I’ve been on ALLLLL the Venlafaxine since I was 25 (I’m 49 btw)

SO PATRONIZING. Like they literally treat suffering from hot flashes like it’s a mental issue. Like we’re crazy. BECAUSE OF COURSE THEY DO.

Blah blah blah I understand the science of WHY I’m getting them, but offering to stick me with needles and fucking shoving refrigerated crystals in my armpits is BULLSHIT.

I bet if MEN got sweaty balls from chemo they’d have 8000 different ways to fix it, though apparently it can happen to them too if they have prostate cancer.

sorry not sorry i get really really angry when I’m overheated. It’s a thing. I blame my Viking DNA. And probably partly my pre chemo steroids hahahaha.

I will get back on the HRT if I have to get it off the black market or order it from sketchy foreign websites. I bet I can get a shady American doctor to Rx it at one of those cash clinics. DRUG SEEKING? Why yes I am. GIVE ME MY HRT MOTHERF*CKERRRR

xoxo i hope all of YOU are having a very cool and comfortable evening. Love you all, Sara.

Currently hooked up to a bag full of the good stuff with another one in the queue. Have any of you needed one? Nurse said this the first time this week she’s seen a normal blood pressure out of me (I do run low). I’m really hoping this is the last piece of the puzzle and I’ll be able to go home tomorrow. Fricken AC chemo is no joke tryna take me out and shit. Thank god I’m done with the pip/taz abx and wbc shots for now- and I do feel like I could totally walk around barefoot in a gas station bathroom and be fine. I’m ready for a break from the dilaudid too. barfffff.

Apparently blood transfusions are way more common than I would have thought- especially during the AC portion of chemo. Pan-cytopenia is a bitch for real. Have any of you needed a transfusion? What was your experience? It seems pretty intense insofar as the babysitting/constant monitoring is going.

Also, why does it make our pee smell so weeeirrddd. Like sour chewable kids vitamins. And not sour in a good blue raspberry kind of way. Sour in like an actual gross kind of way.

So, apparently it might have been a liiiiiittle more than just the AC portion of my chemo making me feel like rained on dog poop- spiked a fever last night and bought myself a one way ticket to the ED. My WBCs and ANC dropped faster than my hair did three weeks into chemo. Went from 24k to literally 0.1, and then 0.0 by midnight last night. So I’m in the ED’s isolation room with warm blankets, weird food, some great nursing stafff, and my ipad. Looks like I’ll be stuck here for at least 3 days while they wait for cultures/pump me full of abx, blood thinners, and WBC stim shots.

Weirdest thing? I actually feel fine. Once we got the fever under control that is. The brain fog lifted- and the AC side effects are pretty mild otherwise. Even my fatigue has lifted.

I think being married to an ED physician allows hospital staff to let their guard down around me- which I love. So all the dark humour is shared.

My poor nurse said at once point “I’ll get out of your hair….” And my 21 year old son was like “Oop!!!” We had a good laugh about that.

The sweet cleaning lady came in and asked if I liked bad jokes (my favorite):

A woman had triplets. She named them Matt, Nat, and Tat. When she went to go nurse them, alas: there was no Tit for Tat.

Also: A woman had identical twins, she named them Juan and Amal. However, she only kept a photo of Juan. When asked why, she replied “Well, when you’ve seen Juan, you’ve seen Amal.“

I’ll be here all day folks. Hahahahahaha

I’d love to hear everyone else’s silly stories, bad jokes, wtf moments- I find it’s so important to grab at the humour when it presents itself. We’re so good at supporting one another with such warmth and sincerity- let’s shake it up with a little irreverence (i don’t think I spelled that right).

PS: I’m probably here because my 14 year old daughter likes to lick public doorknobs with her friends- she was coughing and snotting all last week and doesn’t believe in boundaries. Assuming it was just allergies was wishful thinking.

PSS: i don’t know whether my standards for comfort have really tanked or what, but i’m on a zero G gurney with this foam gel mattress and it’s like the most comfortable I’ve been since all this shit started. I’m going to have to steal it and smuggle it home in my Suburban. Shhhhhh…..

holy moly guys. I thought the docetaxel was bad, but this AC is really something else.

Can we put together all our weird little life hacks for surviving it? I don’t care how random it is: “I only brushed my teeth with purple brushes”

i’m just over a week in after my first AC treatment (already finished DC) and my MO says this is as good as I’ll feel for the next few months- it just gets worse? There’s no reprieve between infusions like week 3?

Between the unbelievable cognitive problems and the physical weakness, I honestly would be okay if they stuck me in a hospital/nursing home for the remainder of this part.

I love you guys- I know i’m not the only one dealing with this!

UPDATE: It was not normal AC chemo response. All my WBCs had left the building. My idiot butt can’t tell the difference between side effects and going septic. Did this with my first round of DC too- Doink! That’s not regular side effects- that’s liver failure! That’s not regular side effects- that’s a neutropenic emergency!

For what it’s worth I also broke both legs in my 20’s and kept walking on them for weeks.

Has anyone used olanzapine for nausea during AC therapy? I’m doing the Keynote 522 protocol, and have managed thus far with only Zofran.

I cannot take any of the second line anti-emitics because I develop akathisia (ie: compazine, etc..), so my MO suggested Zyprexa and said it’s considered a bit of a nuclear option because it works REALLY well for the pukes, has a much lower incidence of akathisia/dystonia but the drowsiness can be pretty brutal.

Like I have any physical energy anyway hahahaha

I know it can be used for steroid psychosis- which is great if I end up on 80mg/day of prednisone again (10/10 do not recommend).

Just curious about your experiences with it: did it, in fact, help with nausea? Did you have any issues other than drowsiness?

Thanks in advance!

Good evening everyone- I hope you all are tucked in and cozy and feeling safe and well tonight!!

I‘m headed to my main oncologist tomorrow for my mid-chemo check in/up. Because Nova Scotia has an AWFUL reputation (well deserved but not the fault of our doctors and nurses)- I don’t know what I should ask or be concerned about.

Backstory: Dx’d Stage III Grade 3 big ass tumour Ithink it was 11x17cm or something insane and no, neither my husband or I could feel it! Plus two necrotic lymph nodes the size of eggs by the time I started treatment at the end of March… (we named them Marcus and The Twins, and they are assholes). I found the first lymphnode in November, it was maybe 8 or 9mm at the time. Bone scan and CT were clean for mets. I have NOT had an MRI or PET.

I don’t know my Ki67 score is, nor have I been offered a Signatera test (or if I need it or if it’s even available in my province). I see a lot of abbreviations in TNBC convos among Americans in the main BC sub, but I have no idea what they are or mean.

Since March, I’ve had the first half of Keynote with carboplatin and docetaxel plus keytruda and lapelga. Liver was dramatic but eventually chilled. Lowered chemo drugs by 20% after that.

My surgical plan went from radical mastectomy and full dissection to a lumpectomy and node exploration with the dye. I have since had my genetics completed and I carry Rad51D, and with my family history, am high risk for developing entirely new breast cancers in the future, so we’re very likely back at DMX. Still working on getting a surgical plan.

I don’t know what I should ask about tomorrow! There are SO many things wrong with cancer care here- but my fight isn’t with the doctors, it’s with the poor political management of our health care system and a government culture of undertreating women in general (fyi, Nova Scotia’s TNBC survival rate is around 38.5%, and that was published THIS February).

Unfortunately- I don’t know what the standard of care is at this point other than the drugs I’m supposed to take and in the order everything is ‘supposed’ to happen.

What tests do I need to advocate for? What types of scans? I felt like he really prepared me well for dealing with chemotherapy, but I often feel lost and undertreated with everything else.

My current breast surgeon said there would be no more scans from the last time I met her (not even a pre surgery ultrasound to gauge my response to chemo) until I complete my full treatment, radiation and all, and probably not even then. Thankfully (I guess?), my genetics put me on a provincial list for yearly MRIs which start around 6 months after completion. My husband, as many of you know is an ER physician. We’re both originally from the States, so the laissez-faire approach to TNBC has us both a little freaked out.

Also, I might just be feeling anxious in general.

Any helpful tips or questions you wonderful folks can provide for me to ask, I’d be really really freakin grateful!!!!!!! My appointment is tomorrow at 12pm EST.

Fuck TNBC and fuck lazy politicians.

It’s the end of another week, and I wanted to do a check in on everyone. As we are all well aware, TNBC can be a wild (wiiiiillldddd) ride. So, I thought an end of the week purge of all the little things that might not warrant a full post might be in order. Share anything you want! Silly, frustrating, fun, scary… it can be an observation or some food for thought. Anything goes and it doesn’t even need to be cancer related (ie: I’d like to introduce you to my pet raccoon Maury, the authorities are after us both but we’ve made a run for the state line….).

I’ll go first: This week, my fingernails started to come off their beds and my ever cheerful 14 year old called my fingers ‘no nail meat sticks” so that was great for my vanity.

I’d also like to welcome all our new members- we’re so sorry you’re here but we’re so glad you found us!

Has anyone else had genetic testing? I got my results yesterday, and while I ‘tested clean’ for BRCA and it’s many variants- I did pop hot for one called RAD 51-D.

They have a whole flow chart they use to see how much future risk I have to develop entirely new breast/ovarian cancers, and it’s not insignificant. The numbers increase as I age but it basically works out that I have about the same risk of developing a brand new cancer as having a recurrence of this current freaking darling of TNBC.

So, it looks like I’ll be upgraded from lumpectomy to DMX. And then also snip snip of my poor ovaries/fallopian tubes. And also probably a hysterectomy because I have a rectocele courtesy of my 10 pound babies boulder sized heads AND I LIVE IN A THIRD WORLD PROVINCE when it comes to womens health.

Guys. GUYSSSS. Get this: we only have ONE board certified breast surgeon in all of Nova Scotia. To get balancing surgery? 5+ year wait. YES healthcare is free which is amazing. Butttt… the follow through is non existant. This is a rage that has been bubbling inside me since I found the lump. I haven’t figured out where to put it yet, but I’ll share the news article when I do lol (we Canadians loooove to complain to the press almost as much as we love hockey and poutine) (and curling). I literally fall asleep at night writing protest speeches in my head.

Anyway. Cancer is Gross. Definitely NOT “RAD” if you ask me. Gnarly, grody, yes. Not rad.

IYKYK…. Constipation so bad you pray for the dookie dramas, dookie drama so painful you pray to never poop again… flatulence so loud and so foul, neighbours send the volunteer fire department to investigate. Cramps, false starts, laxative side eyes….

Anywaaaayyy… what are you guys doing to help support/recolonizing the gut?

Specifically- what kinds of foods/snacks do you find helpful after the first week of the post chemo ‘great gut bacteria die off’

I find adding gently fermented/pickled snacks (think pickled okra/beans/beets) and a lot of fiber (black beans, fresh veggies, salads) to be much more gentle than health food store yogurt shots of 10 mega bazillion live! bacteria whatevers- ‘probiotics’ only seem to make matters worse and more painful.

I’ve found I’m protein averse the first week and a half after chemo, but when I do have it, it’s usually organic/local eggs, poultry, and cold water fish. I’ve completely lost my taste for fried/rich foods and red meats. Except for potato wedges in garlic aioli. Those get to stay. Forever. Bury them with me.

mmmm… with the crispy edges….

49/F TNBC S3 Trying to follow Keynote 522 with some hiccups but I’m officially 1/2 way through chemo

Have any of you continued on ADHD medications during treatment? Before diagnosis I would take 10mg adderall extended release, 1-3x a week when I needed to have a working brain (I’ve never really liked it). Tbh- 10mg sounds like a lot to me now as well.

I made the decision to stop taking it before beginning treatment to let my body just concentrate on getting better but now I’m reconsidering.

I’m concerned because I’m barely functional mentally this chemo brain is LEGITTTTT(who am I? What day is it? Did I take that med? Who is this child and why are they calling me mom hahah no way she looks too much like me to question the DNA!).

Going into the second half of Keynote, one of the drugs carries a not insignificant risk of cardiological damage. I have a history of benign palpitations and PVCs attributed to mild hyponaturemia. Stimulant ADHD drugs do increase cardiological irritation in me.

Have any of you faced the same predicament? Did your MOs suggest a different medication? I’m doing all of the things: notes, calendars, etc.. But I’m struuuggling. I can do chemo brain or I can do ADHD brain, but the double whammy is wild and watching hoarders isn’t even motivating me anymore (iykyk ha!)

Thanks in advance!!!!!!!! xoxo