u/PeaceLvSpreadsheets

The Daily podcast by the New York Times is very popular and I listen almost every day, so my interest was peaked at today's story about cancer rates increasing in young people. In cancer world, "young people" means anyone under 50. To start off they interview a woman who was diagnosed with stage 2 TNBC at age 36. The story spends a lot of time discussing how disruptive cancer can be to adults just getting started with family, careers, life journeys. The podcast doesn't have any grand answers - except reassurance that we are ALL really puzzled about why rates are increasing and what we can do about it. There's nothing you missed, nothing you caused, nothing you could have done to prevent this, scientists are really grasping at straws about what's causing the trend. They did mention that mothers who breastfed their babies have slightly lower breast cancer risk but... I'm a mom who breastfed two babies. And here I am :(

my first radiation appointment is today and I lost one of the marks they put on me last week... they should have tattooed it! The overview physicians assistant told me "we're going to put tiny tattoos on you, smaller than a freckle!" and I was like okay great, free tattoo. I've had tattoos before. But then when they did the actual scanning and marking those people were like "you only need these marks for a week we don't have to tattoo you, you just want stickers?" I was like how do I make that decision I've never had radiation before! so I asked the tech "what would you do?" and she was like "oh stickers totally."

well the one in my the middle of my chest got itchy on the 2nd day like a cheap band-aid and I had to peal it off and I just used sharpies to mark where it was, and it's July and so hot and I am SO DAMN ENDLESSLY SWEATY I had to re-sharpie myself like every six hours it was awful! Then finally last night I put on some lotion and I guess that killed it, after a whole week of doing this work when I woke up this morning the marks were absolutely gone.

stickers in late july in the midwest are a FAIL, y'all!

So wish me luck I guess they'll have to re-map everything or something, I'm just going to march in and announce that I failed as a cancer patient once again and see what they say!

I am 45 years old and finished chemo two months ago. But my hips feel like I am 80! If I'm sitting in a chair for a while, then stand up, my first 10-20 steps look like I'm not going to make it, I am bent over, moaning with discomfort, slooowly getting to where I need to go until my body remembers "you can walk now" or something.

Once I walk a bit I'm okay. In fact, I've gotten back into running - before chemo I loved to run 5 and 10K races. I had to drop down to walking during treatment. But I started running as soon as I was cleared after my lumpectomy, even if it was only a block, and now I can run a whole mile consecutively, it feels great!

But why does it take so LONG to warm up, whether I've been laying down, sitting on a chair, driving, sitting on my couch - it's like I've aged overnight. Anyone else deal with this? Does it just have to get better slowly, or is it a strength training issue (I am doing some, slowly) or nutrition or something I should get checked out?

I had surgery four weeks ago - lumpectomy with three lymph nodes removed.

For the first two weeks I was kind of afraid to move my arm because the big incision in my armpit scared me, deodorant hurt to put on so I got a spray but it wasn't great.

At the two week mark I had my surgeon follow-up. They removed the dermabond and said I was healing just fine and I could do any activity I wanted - running, lifting, swimming, stretching.

By then I was realizing that the pain in my armpit wasn't at the incision, it was higher up in my armpit and really restricting my movement. I could see/feel the cords in my armpit. My doctor said keep giving it time - she said four weeks would be better than two weeks, six weeks better than four weeks.

I couldn't move my arm higher than about 90 degrees - I could make a T shape but not a V.

I called a physical therapist, they're booked out for a month. I called my doctor and she said she'd refer me but we should talk to radiation first about whether I should do PT before or after radiation.

In the meantime I was doing youtube stretches, finding all these PTs on there saying "don't let your doctor just tell you it takes time! you need a professional, somebody who can show you nerve gliding and massage just the right spot until you hear some magic pop and then you're back to normal ahhh!"

I am now 3.5 weeks out and I am much better. I can still feel a difference. I can make a V shape with my arms - it a stretch, it's not perfect, but it's better than I was 2 weeks ago.

Did any of you have cording issues? CAN you just stretch it yourself or did it take PT?

I am worried I will never be able to do lateral pulldowns, or reach high shelves, or perform the YMCA dance with the carefree enthusiasm I used to have! I'm so tired of doctor appointments I hate to go to physical therapy, but maybe my surgeon was right I just need more time?

I don’t know if I’m emotionally complicated or indescribable or just bad at being human but well-meaning people would randomly check in and ask me how I’m doing, and I had no idea what to say. IT’S COMPLICATED! I’d think. Or I’d say “Fine” when I was not fine. Or I’d start a huge long “fuck cancer” rant full of over sharing that scared everyone. Or I’d just have no idea.

So my new theory is that they might just want a status not a feeling? I flipped my answers to “just the facts” and we all seem happier.

“Three chemos left!”

“Surgery next week!”

“Just had surgery!”

Whatever the closest tangible step was, instead of “I can barely walk up stairs” or “I’m fine dammit” because people can’t seem to wrap their brains around the complicated in-between “okay but not great and probably bad but not dying” that is cancer treatment.

Hope this helps, open to hear how you all responded too.

Surgery post

Yesterday was my lumpectomy and so far so good, here’s how it went:

Checked in at 8am for some kind of dye injection? They were like “sorry for stabbing you four times on the edge of your nipple we will talk you through it!” But honestly it was such a tiny needle, it was quick, IVs and bone marrow booster shots are WAY worse.

That took like five minutes but my surgery wasn’t scheduled for two hours so good thing I brought a book.

Got knocked out and apparently cut up. They took three lymph nodes.

When I woke up I was MUCH sleepier than I was after my port surgery… I had general anesthesia for that one too but snapped awake and asked to hit up a taco shop drive through on the way home. Not so much for this one! When I was awake enough for a drink of water they gave me a hydrocodone pill. My husband drove me home and I went straight to the couch. That was about 2pm. They woke me up at 6 for dinner, he’d made beef stew and I hadn’t eaten breakfast or lunch so I had two big bowls of stew and those were great! Hung out with the family and went to bed around 10.

Woke up at 4 which is fairly normal for me. There’s a 2” cut on my cancer boob that I’m barely feeling but also a 2” cut at the bottom of my armpit that is really sore. I’m wearing a zip front sport bra for support. My armpit is kinda sticky - I’m sure they cleaned/removed deodorant but I’m not sure how to put more on because raising my arm more than 45 degrees is so feels scary, I might buy some spray on stuff today.

I took an ibuprofen, I have hydrocodone but might not take that because I do want to get back to work tomorrow and I don’t want to sleep all afternoon! Maybe I’ll take it at bedtime if my armpit is still sore and work remote. My doctor said no stretches yet, I can take walks, shower, just take it easy.

She also said pathology report in 1-2 weeks but we’re getting up against the independence holiday so that can slow things down. All I want is to be independent from CANCER dammit! Fingered crossed.

But the surgery wasn’t too bad, hopefully it all heals up okay and I hope you’re all having a good week!

I don't know how long it takes to recover from chemo, but 3 weeks must not be the answer.

Thanks to nivestym shots my neutrophil count (ANC) went from 0.1 last week to 1.4 this week... almost adequate! But still low for me, even compared to my last many months of chemo. I was in the 2-5 range after my other nivestym weeks.

I'm mildly anemic. I black out when I stand up too fast, when I stand up slower, or when I just stand.

I had that upper respiratory mess last week that is slightly better.

just checking in and ranting. maybe we need a small talks/ranting thread? but we don't have tons of posts, so... happy you all are here even if I'm not exactly a ray of hopeful sunshine for the post-chemo phase.

this is a rant, feel free to co-rant with me, or advice would be okay but I doubt anybody has any, just no sympathy I'm in no mood.

I finished chemo two weeks ago and it is determined to remind me that I'm no match for it, I guess.

last week I started coughing and this cough will not go away. monday I told my care team, they sent me for a chest x-ray and put me on some crazy antibiotics just in case... levaquin, the paper said "may cause nerve damage" well joke's on you, I already have nerve damage! but the x-ray said I do not have pneumonia so that's good news. but the coughing fits keep me up all night. I haven't slept more than an hour or two at a time.

my blood tests today said I have no white blood cells to speak of, slightly anemic, low ANC, so I'm getting the bone marrow shots they said THREE days in a row this time instead of the normal two. ugh.

I have tried sleeping in my recliner, cough drops, honey, Dextromethorphan, cough pearls (benzonatate), claritin (in case it's post-nasal drip? but I'm not congested), pepcid (in case it's reflex? but I don't feel heartburn). I'm working from home which is boring and lonely.

at least I'm done with chemo treatments and thank goodness because if I had to go back next week, I don't think I could. I am dragging myself out of this.

my friends made me a cute card that I kept in my office that said "you'll make chemo you're bi-atch!" and I'm here to say nope. nope I did not.

I am so freaking tired I can't concentrate on anything - might as well write up a post!

Last week I rang the bell to announce that I was done with...

14 taxol infusions (it was supposed to be 16 but dammit neuropathy)

2 carboplatin (was supposed to be 4 but dammit neutropenia)

5 keytruda (was supposed to be 8 to start with, 17 eventually, but we stopped because sjogren's - an autoimmune disorder that may have ruined my saliva glands)

4 AC aka the red devil and this one I actually finished! I feel like the red devil, while quite tiring, does not deserve its name if taxol can just be called taxol, ugh.

my experience:

I did ice my hands and feet during taxol but only had one pair of feet booties and wore socks. is that why I got neuropathy bad on my feet? there's no guidance about this, my cancer center doesn't have a freezer or any recommendations, they just shrugged and said "can't hurt". did my feet not get cold enough? well neuropathy sucks. on the bad evenings I get shooting pains in my 4th toes, I can no longer just sit and relax with my feet up. the symptoms are a lot less if I'm standing/walking around, if it's not early morning or late at night, if I'm wearing shoes and socks. I hope it gets better :(

I went to work every day. I was tired and grumpy a lot, but I made it. I went home early sometimes to nap, especially on days when I didn't have a lot of important meetings so I could work from home. a 20 minute nap made a huge difference... until these past few weeks, when suddenly everything turns into a 2 hour nap.

I got my 8-10K steps in every day. moving is important. I couldn't run like I used to. I got so I could only go a half mile, then a few blocks, then a block, before I'd need a walking break. I told someone - it's like starting a "couch to 5k" program, but you're perpetually stuck in week 1, even if you work out every day, nothing builds.

the low point was definitely the time I had no immune system so I got fucking shingles.

the high point was all the friends who supported me and came with me to all these damn treatments, distracted me when I was in the waiting room waiting for lab results, helped me when a treatment curve ball was thrown my way (like stopping taxol!). May you all have more friends than chemo appointments.

I had to buzz my hair every week the whole time. I lost a TON of hair exactly two weeks after my first taxol infusion, it was everywhere, a giant ball of it in the shower and it hurt to have all those hairs pulling each other out. so I had some friends give me a cute buzzcut, like 1/2". But then that got patchy as hell, I looked like a sick puppy on the side of the road, so we took it down to a 1 gaurd and I waited for it to all fall out. but it never did! just stayed patchy and weird. fine. I never liked my wigs. I threw on a ball cap, or bandana, or just ran around bald.

my armpits were the only part of me that went 100% bald. I've told friends that when I have to shave my armpits again, i'll shave my head.

my legs got hairless towards the end of taxol, but that started slowly growing back. it's weird.

my taste buds have been screwed up in different ways the whole time. I miss cheese tasting normal. salty things are just off. fruit tastes good. yogurt. simple things, I guess. but a yummy looking meal at a restaurant looks awesome, and then just... doesn't hit.

I did eat three meals a day though. sometimes smaller, my appetite went down a bit, but not too bad. anti-nausea drugs are great now! I took a ton of laxatives to counteract them, the balance is hard to maintain, but it's doable. so in the end, I did not gain or lose weight.

I painted my fingernails with nail hardening polish and they're fine.

what's ahead:

1. recover from chemo for a few weeks

2. lumpectomy in a month

3. pathology report - fingers crossed!

4. radiation

5. the dark umbrella of recurrence fears forever

if you read all this I am shocked, but thank you all for this little community that's been helping me through. fuck cancer.

Okay I should NOT be spiraling downward right before my last chemo infusion but I am. For those of you who are past the initial treatment phase...

1. How are you checked for recurrence? I have dense tissue so mammograms don't show my cancer, so that makes me nervous.

2. For those of you who had recurrence how'd you find it and how bad was it? I keep hearing that if TNBC comes back, it comes back everywhere.

3. What was your recurrence treatment like? I feel like we are just all on keynote 522 after we get diagnosed but I have no idea what happens if you're declared cancer free, then declared not cancer free. And I haven't been been cancer free so maybe this is not the question to ask but it's where my mind is at today.

Here are some things I did recently:

1. I made every user flair editable. I don't know what to do with this stuff so hey we an all be creative. Stage didn't seem to fit. But I overthink things, especially right now, so now you can pick a user flair and make it literally whatever you want it to be.

2. Added new post flair for clinical trials, good news, caretaker questions. I like what the larger breastcancer sub does to with caretaker questions, they're allowed just have to use the right flair.

3. Took a nap. Because, chemo. It sucks but I'm thankful for this community and the support we have for each other. Hang in there and hope for the best 💜

Happy to hear any other suggestions or thoughts you have about our new and growing subreddit.

I am so ready to be done with chemo.

AC #1: My oncologist wanted me to come in the next day for a Fulphila shot so I wouldn't get neutropenia. Okay, did that.

AC #2: Insurance said we won't approve that. Okay, so I did not do that. But two weeks later my ANC count was 0.2 cL so my oncologist called insurance and they approved two nivestym shots - one that day a follow up the day after.

AC #3: I was like what are we doing people. Same dance! Get chemo, wait for ANCs to tank, and surprise... they did! So I got a call from the office that I'm going in tomorrow and friday for nivestym because insurance will approve it based on bad labs.

Did I mention I have a full time job? Good thing my coworkers are tolerant but this means I can only be in the office for a half day, then leave at lunch, get my shot, work from home since it's closer and teams in to my later afternoon meetings... it's just a pain.

how's this working with your care team? it feels stupid.

We get a lot of "just diagnosed" visitors here. I was stage 2, so ended up being chemo first surgery second, and I'm not DONE with chemo so this list might build, but I wanted to get it out because it's advice that I can see myself reposting again and again, I'll probably pin it to the top of the thread. But I'd love to hear from you all about what helped you in the terrible period between diagnosis and treatment starting, when your head is just spinning. It gets better, mentally! This was a rough time for me because I really hate UNKNOWNS but it was only a month. I hope you all get similarly good attention!

1. Know that you have at least a month of scans, tests, referrals, probably port surgery before chemo starts. I had no idea what to expect but staging is complicated. Treatment for me started one month after "the call" but that's pretty fast, 6-8 weeks is common.

2. Get a notebook to write down all the phone calls and appointments that will fly your way. Any time a doctor's office calls you write down WHO you talked to and what number you should call back if you have questions because you will think of a question, probably 5 minutes after hang up.

3. As soon as you know you're getting TC chemo - aka Taxol aka Paclitaxel - order freezer gloves/booties or post in a local cancer group to see if anyone has some. So many things you need are locally available and you might not even need them but these are not. I am cheap af and tried not to order anything but I eventually got two sets to rotate them, and ended up with some neuropathy in my toes but none in my hands. Even better - start a wishlist and have friends/family buy you two sets because people ALL wanted to send me something, and without a wishlist I ended up with SIX fuzzy blankets! They could have bought me craft supplies! Eventually I figured the wishlist out, and just asked for things I wanted, people were very supportive it was a huge relief.

4. Buy a hair trimmer. I thought I'd lose all my hair one day and be bald. But nope, I had this patchy mess the whole six months that I just re-buzzed so there wasn't one ceremonial need for a trimmer, it was constant.

5. Get your vaccines up to date - flu, covid, shingles if you're eligible (I got shingles when my immune system was down yaaaay ugh)

6. Visit your dentist. Get a teeth cleaning out of the way. Tell them you are starting chemo, it will affect your mouth and they have good advice. Mine told me about biotene mouth rinse that was great for dry mouth!

7. Start using nail hardening nail polish

8. Eyebrow microblading? I didn't do this, ran out of time but it would have been nice.

9. Work out! Exercise pushes the bad thoughts out of your head and it's good to be in shape to get started, when you're in treatment it's still great to work out if you can but everybody is different. I was frustrated my by inability to build anything, every run felt like I hadn't run in weeks even if I was going every day, but I still tried!

10. Visit your optometrist, get the eye check out of the way so you know if your vision is affected. And it's one less thing to deal with!

Okay friends - that's my list, what would you add?

I keep dancing around this in my comments I just need to make a post about it!

I hear that dry mouth is very common with chemo.

BUT I asked my oncologist for prescription intervention because mine was so bad - I needed a constant supply of xylitol lozenges, melts, rinses, gel, spray, gum just to get through my day as an office worker with occasional meetings/mom who needs to talk to my kids and tell them to put shoes on 87 times so we can get out of the house (maybe I could just make a recording of this to replay, sigh).

So we tried Pilocarpine and that didn't go well because one of the side effects is sudden onset of explosive diarrhea - I might be brave and try it again but my first attempt was a learning experience! So, not on an office workday.

And now my oncologist is wondering if I might have an auto-immune issue stemming from Keytruda. Trying some steroids. They're saying that my dry mouth might be way worse than normal chemo stuff. Tested me for sjogren's antibodies and that came back positive.

I also noticed that after I stopped Taxol, my taste buds came back to normal. On weekly Taxol I had been unable to taste anything salty. cheese was gross. In my break time between Taxol and AC I could love cheese again! My dry mouth did NOT get better though.

I don't have the other sjogren's symptoms like dry eyes, etc... just not making saliva.

Thank goodness for xylimelts! But I shouldn't need 10 a day just to survive, right?

I am 4 months into the 6 months of keynote 522... done with TC, halfway through AC, and here are three things I'm dealing with that I just HOPE go away... but I'm curious what you all experienced?

Neuropathy - we stopped taxol two doses early because my toes were asleep all the time, and on bad evenings I get this shooting pain in my 4th toes, I have to move around and stretch and sometimes just ignore it as best I can. Yes I did the ice booties during taxol but studies were mixed on those anyway. Luckily my hands are better. Maybe I shouldn't have worn compression socks too, my hands always felt colder, maybe the socks kept the cold from getting to my toes? Anyway will this go away, and is there anything you did to help it?

Sjogren's - Keytruda might have given me an autoimmune disorder. Still ruling things out we're trying to wake my saliva glands back up with steroids but my dry mouth sure didn't get better during my 3 week break between taxol and AC, and I know there are other autoimmune things people get, did they go away?

Hair loss - I didn't cold cap. Didn't go totally bald either, so I'm hoping that's a good sign. Did you have permanent hair loss?

Okay that's three things so that makes a post, thank you all in advance for helping me know what to expect on this whole crazy unexpected journey. 💜