Starting chemo April 2023

iamnobird · June 2023

Mouse: I am glad that you were still feeling well. Although yikes to the crash! A bit scary. I did something similar. I managed to trip over my sandals and then the rug while I was walking in the living room on Thursday. Our house cleaner was here and my daughter and everyone just heard a loud crash when I hit the floor. I was fine, but a bit bruised and embarrassed. But I do find that I am a bit more clumsy lately. I am glad the information was helpful. It is absolutely the most positive stuff I have seen, it even mentions that HER2+ meds have now given my type of cancer the same odds as the ER+ ones. Which is so reassuring. I could live in a smallish house, I think. But a tiny one might be a challenge. I do like the idea of having a smaller footprint and less stuff, but I am not great at not accumulating. Books are my downfall. I need to purge a whole bunch of them.

Our road trip was fun. The statue park was just as creepy and cool as promised. And the lakeside scenery was gorgeous. That said, the Finnish countryside is vast and very short on facilities once you leave the handful of city areas. I am thankful to not have any sides yesterday because I would have been out of luck! We are just chilling today. It’s a bit cooler and rainy. We have some more major high level embassy visitors happening right around the time I start EC chemo. I need my husband with me and he knows it. I just feel bad because he is going to be so stressed about everything. Ir sucks that my cancer treatment has coincided with some serious work stress. I mean, they are super understanding, but he doesn’t want to let anyone down so it is stressful for him.

NJ: I hope you are still feeling well! Will you do anything special to celebrate halfway? I bought a new gold necklace as a halfway gift. I am going to buy a ring for finishing chemo. Something that is a nod to breast cancer without looking like a breast cancer ring. I obviously am a shopper🤣. But looking for the perfect ring has been a fun distraction.

Cat: We missed you Friday. I hope you are having a restful and fun weekend and aren’t feeling too yuck.

njdogmom · June 2023

Glad the road trip was all you expected Bird! Were the kids creeped out enough to justify the time they spent having mandatory fun? 😊 I love the idea of a halfway gift but haven't been in much of a shopping mood recently. I should look for some bigger earrings for the chemo phase II look. I think the only large earrings I have are hoops. I wish I could have a couple of week break between the two rounds. Best halfway gift ever would be a spa pedicure with an extra 15 minute hot stone leg massage!

Steroid crash used to happen later in the weekend for me but is now starting Friday evening and lasting well into Monday. New sides this cycle - tingling in hands and feet, muscle aches. The silver lining, only one more round of this cocktail and then on to something else.

Cat and Mouse: I hope all is well and that you are having a relaxing weekend!

iamnobird · June 2023

Good morning!

NJ: It was plenty creepy and my daughter asked for my photos of it, which means she was impressed as well. My son grudgingly said it was somewhat interesting 🤣🤣. So, this is pretty good since it was a 4 hour each day road trip into the wilds of Finland. I just bought some new hoop earrings as well. I have some that I got from Target last time we were in the states, but they badly needed an upgrade. Yuck to new sides. From reading, it sounds like lots of folks find the last 2-3 Paclitaxel to be the hardest. A stone leg massage sounds awesome! I’ll attack a few photos so you can get a sense of it all. He doesn’t seem to have been an actual serial killer, but it has that vibe. It is rather unclear where he got all of the human teeth used. 😳

Normal Monday here. Grocery shopping, laundry, etc. Pretty darn boring. Weather is nice though. I have a bunch of mysterious mosquito bites on me so they must have nabbed me at some point. I have the bedroom closed up and the a/c running even though it isn’t that hot. I just like having air circulate and no bugs. My poor husband is likely being frozen to death. But, hot flashes and chemo means I win.

Heya to Cat and Mouse! I hope you have a great start to your week.

iamnobird · June 2023

catm · June 2023

Good morning gals!

Had chemo #3 on Wednesday and my "crash" days just happened to fall over the weekend, so I spent A LOT of time sleeping over the weekend (felt a little puny) and am trying to do a little catch up now.

Mouse: How are you feeling after your first round? I know you have to be so relieved. Also, I want to say how thankful I am to the 3 of you who will be experiencing (or at this point HAVE experienced the "Red Devil") before I will. It's scary to all of us and a comfort to know that we will get through this together!

Bird: Thanks for your kind words. I miss my old self and hair (don't we all?)- Speaking of hair, you might want to join the "Chemo Cold Cappers Support Group" on Facebook. I joined when I was researching Penguin Cold Caps versus Dignicap. There's some good info in here, as well as AC gals who have kept their hair.

Bird: I bought "Style Edit Root Concealer Touch Up" for my roots (using here and there when trying to feel normal/going to dinner). I also just bought "Boldify" hair powder- this is supposed to work well for bald spots and there are some photos on the FB page.

Bird: I had a hard time icing my hands last go-round as well. A "chemo friend" (who rang the bell Wednesday!) gave me her white cotton gloves. Not sure if these defeat the purpose or not but they definitely helped take that super freeze edge off. Just a thought.

Bird: Those statues with the "human teeth" (or dentures?) are very weird indeed and I love you sharing all these interesting adventures.

Dogmom: How did the radon mitigation go and how is your sweet fur baby doing? Also, I am very glad you have an ENT appointment and hopefully your onco can help you get that moved up. In addition to naps, I am thankful for BATHS! Boy do baths help me with the leg and "other" pain. (Oh and Dogmom, hope your debut in my "club" was short lived!) Speaking of……

I saw the colorectal doctor on Friday. His biggest piece of advice was Metamucil once or twice a day and frankly I think that is helping already.

My daughter has been gone for 2 weeks (spending time with her grandmother in RI)- she just got home and it is such a joy to have her home. She loves to cook for me and hang out and chat. It's such a silver lining during this strange time.

Opinion please: I have 3 weddings coming up. The first is end of July with about 50 people. Would you all avoid the crowd? I'm not sure I have the energy for it anyway and it's out of town. The other 2 are end of September and much bigger. I'll think on those closer to the dates. But in general, would appreciate your thoughts on these crowd situations- avoid?

Hoping everyone has a great day!

Xo

Cat

iamnobird · June 2023

Cat: If you want to go to the July wedding and think it would make you happy, then I would go. If you think it will be difficult and you won’t enjoy it, then I would skip. I’m helpful, right?🤣🤣. I mean, chemo is a good excuse to get out of non joy sparking social occasions. But we also deserve to feel human and do things that are important to us.

corduroy mouse · June 2023

Cat - If it were me, I might talk to my oncologist. My nephew and niece and her family are doing a 3-week road trip to Florida, and I haven't seen either of them in at least 25 years and would so like to be a part of their adventure. Given I am early in chemo and not sure how my body would respond, my doctor thought it advisable to not expose myself (especially as there are school-age children, and they will have already traveled to a dozen places before getting here. So, this one is going to be a pass, but once we get through the paclitaxel and radiation, (this being a joint venture with my husband after all), I hope we may be able to take our own road trip north to see family and friends. Your doctor may have a different perspective.

Bird, those statues are creepy in the extreme (I think it's the way they're grinning…lol). A long daytrip, but you have the memory of it, which will last forever. The climate there sounds very inviting at this ime of year. It's hot and humid here, and though the flowers and trees seem to love it, it's rough when you're trying to ride out the chemo.

The sides to the A/C didn't really start to hit me until Saturday (day 3 after infusion). The biosimilar for Neulasta caused pretty awful bone pain in knees, hips, ankles, but not the long bones. On the other hand, the effects from the steroid to counteract this seemed worse than the bone pain. Up at 3:30 AM Sat. and Sunday, and tried to do some yoga and meditation, but my youngest cat was not cooperating. He only wanted to wrestle one of the older cats or to wrestle the yoga mat from me. Mostly jittery but also bloated feeling (me, not the kitty), and gained 2 pounds in fluid weight. No "side" of diarrhea (imagine being in a restaurant now where they ask you if you'd like any sides with your entree…I'll never look at potato salad the same way again). I have horrible constipation and have been loading up on Miralax throughout the day, plus two stool softeners and two laxative tablets (per oncologist's request). Just afraid that when it lets go, it won't happen under ideal circumstances. Notwithstanding, steroids have given me a bit of a push to get a few things done around here. So…. survived the first cycle, and now having discussions with work as to when to return, a harder question to answer, as I am learning along the way.

The halfway gift sounds like a wonderful idea. I'd like to get a couple of new plants, having avoided collecting or starting any more until I felt ready to add them to my daily gardening chores. Someone from work sent me a lovely pendant (looks like a dragonfly in amber, only in blue) as well as some earrings. They look like fun.

I hope to be able to hear your voices on Friday. You all definitely are in my thoughts and prayers.

njdogmom · June 2023

Bird: That's pretty damned creepy! I may lose sleep over those sculptures. Thanks for sharing the photos! We're getting to see the unusual side of Finland. Very cool! And I may not sleep tonight. 🤣 You can't unsee those!

Cat: Rest is a good thing and so glad you are feeling up to catching up a bit. The intestinal side effects are exhausting. I have no idea how you've had the fortitude to be standing up, let alone being cheerful. I'm honestly starting to get a bit annoyed with my body at this point. I haven't been soaking in the tub these past few days because we've had wild thunderstorms with lightning strikes close by. I time showers between lightning activity. ⛈️Re: 3 weddings - Perhaps see how you feel and how your numbers look around the rsvp dates. Maybe be flexible about which parts of the event you attend and how long you stay. You don't have to sit shoulder to shoulder in a pew nor stay until the cake is cut. Yes. I'm suggesting cocktail hour! 🤩

Cat: Radon mitigation and sump pump replacement took the better part of the day. The only hiccup was on their way out, the mitigation system stopped running. Turns out they tied into electrical power controlled by the wall switch in the basement. I turned the lights off when they left the basement and poof! haha. All fixed now though.

Cat: ENT called yesterday and moved my appointment from August to tomorrow. Thankful for that. The oncologist worked her magic! Heading to the vet oncologist in a little while. I'll post when I have more information about the dog.

Mouse: Sorry you had the awful bone pain and that the cat couldn't manage downward dog. I think it's a cat thing. It seems baby goats are the most cooperative yoga buddies. My dogs think the yoga mat is a dog bed. It's squishy and on the floor, therefore must be for the dogs. I'm following the BRAT diet as recommended by Cat for the next couple of days.

Swedish death cleaning update: Just one contractor bag and a full bin this trash day Tuesday. I did pack 4 boxes of household items to donate and 3 kitchen bags of clothing. Most notable items that I had no clue I still had - tennis racket from college days and a box of kitchen things that never got unpacked when I moved here 10 years ago. I looked up the date for the next county shredding event. I think they let you bring 10 banker boxes of stuff to shred. I ordered a set from Amazon. I have until the fall to fill them. 😀

iamnobird · June 2023

NJ: Okay, I am thinking of you today and hoping you can get some sort of plan from the vet oncologist. And glad you have your ENT meeting tomorrow. Sounds like you are taking care of business! It is a busy week for you for sure. But good to get sorted before the next phase starts.

Mouse: I'm so sorry about the bone pain and constipation. It sounds like those are unfortunately super common with AC. I am hopeful for you that as time goes on, you learn what works to keep those at bay. I have heard that taking Claritin several days before and after the shot can help with bone pain. I don't know if you have tried that or not? But maybe it would help. My oncologist definitely emphasized that that is a nasty side effect of treatment.

Cat: Thanks for the tips. I was actually part of that FB group, but i unsubscribed when I realized that my hospital didn't have a "real" cold cap system. I figured it would be disheartening to give myself false hope. I think my hair is thick and that the weekly meds really allow many folks to make it through with hair. But I know that the caps aren't really cold enough to make an impact on stronger meds. So I continue to try to prepare myself for the loss. I am glad that metamucil has helped you out. And now intrigued that I might need to add it in my routine if the diarrhea becomes common place.

I didn't have my infusion today as it is my week off, but woke up today feeling awful! I've had diarrhea for the last couple of days, and that side, combined with nausea and dizziness greeted me today. It was a bit like a head spinning hang over. Ugh. Hydrating and eating some cream of wheat with bananas helped. I eventually walked the dog and put some clothes on, but have been a sloth today. I now know that, if all goes well, my last chemo will be on August 15 so I have that date circled on the calendar. It helps to know that there is an end in sight to the chemo, even if treatment is far from over. My nurse is actually out on the date I start, on holiday for a week, so I get the other nurse that has been working with me. She is very nice and has a good bit of experience, but much younger. I'm a little nervous that Marianne won't be there for the first infusion, but we will manage I am sure. Marianne told me today that she has another patient who just switched from Paclitaxel to AC and she asked which the patient found better, and the answer was shockingly AC. So she reminded me to keep a positive mindset.

catm · June 2023

Hi gals

Just checking in with everyone.

Thanks for your input on the weddings. As usual, you all have really good ideas. I was planning on checking with my oncologist(s), but I also like your idea of seeing where my blood work is. Fortunately, I can be pretty flexible about it all. I am a planner though so generally speaking, I DO prefer a plan! Frankly, I'm not sure how much "fun" any of these wedding sound right now. I tire easily and just getting dressed for the weddings and doing 30 minutes of chit-chat sound exhausting. Last night I felt awful- nauseated (I think in part because insurance wouldn't fill until today one of my ant-nausea pills.) Anyway, I can't imagine being away from home feeling like last night. Speaking of………

"The SIdes": Mouse: I am so sorry you are experiencing the Neulesta shot bone pain. It has def been an ongoing painful SIDE for me. I find soaking in the tub helps. I also take ONE oxycodon 5 mg a day along with Tylenol and ibuprofen. The oxycodon ONCE a day really seems to help me with the bone pain. My oncologist prescribed this. Also Mouse, I am often up at 2:00 am/3:00 am with the bone pain as well as the addtional "SIDE" of BM frequency and urgency, and also the jittery energy. Just sharing to share- maybe it helps to know you are not alone? Perhaps this SIDE is not unusual?

MORE SIDES PLEASE!: So, we are all experiencing GI issues. My colorectal doctor recommends Metamucil (start with one a day, progress to 2 glasses as tolerated) for both constipation and diarrhea to bulk up the stool. I do think this is helping me. One other idea Mouse: you might think about mineral oil (oral) with the constipation. I would ask your team about it but it might help.

Dogmom: delighted you are seeing the ENT tomorrow. Please keep us posted. Yay for the radon getting dealt with and I just love your Swedish Death Cleaning. (Bird, I really am loving the show and am doing some cleaning out as well.)

Bird: I really am sorry that Finland doesn't offer better cold capping. As usual, your attitude is inspiring and spectacular. I also know that you will be rocking whatever look comes your way during this journey.

Tomorrow I get my first ultrasound since chemo at the breast surgeon's office. Fingers crossed!

Friday: I have labs and a PA appointment in the am. My brother is also coming to ATL to visit me for the weekend, I am so excited! He is due to arrive at 1:00 pm. So, I'll be on the go-go Friday but I am going to take my laptop with me to my appointments and the airport. I will jump on the call if possible while on the go-go but I might also have time from the cellphone lot to chat for a bit.

Sending hugs,

Cat

iamnobird · June 2023

Good morning! So my middle kiddo was sick yesterday as well, with what sounds like the same symptoms as me. So I suspect we had a mild tummy thing and perhaps it wasn’t chemo. It’s always hard to say as chemo IS to blame for so much. I am feeling back to normal today so I will take it.

Cat: I will have fingers and toes crossed for you on Thursday. Hoping it shows SO much shrinkage in the rumors. And my attitude is actually not all that great. I struggle with acceptance, but am fundamentally too lazy to do anything more elaborate so it is what it is. I think we might have been able to have Penguin stuff shipped to Helsinki, but then finding dry ice every time and wearing the cap for hours didn’t appeal. So I am just riding this ride to see what happens.

Constipation: So this was a definite issue after my big DIEP surgery. I took all of the stool softeners, but also drink coconut water and I drink oat milk lattes daily. I swear the oat milk latte generally works like a charm. I have also heard great things about smooth move tea and bought some to have on hand. It took me about 5 days to poop (I finally went on the morning of discharge and my emergence from the bathroom successful was met with celebration lol). I also ate SO many prunes. My nurse suggested always soaking them in a glass of water first though.

NJ: Thinking of you and hoping for good updates on all parts. It’s your getting stuff done week and I am hoping you get a bit of a break soon. Basements are so handy for stashing stuff that you don’t really need. We had this weird subterranean basement allotment in Vienna (they literally used all of the interconnecting huge basement areas as bomb shelters during WW2 but they have now been walled off from each other) and we pretty much threw out everything we left down there for the 4 years of our posting.

I wanted to march with the other diplomats in Helsinki Pride event this weekend, but I don’t think a large parade is the place for me. Plus, the waiting, lack of bathrooms, etc. My daughter wants to do it and I am sad that neither my husband or I can make it this year. Our high level visitor is arriving soon and things have kicked into overdrive.

corduroy mouse · June 2023

Hi all,

Glad to see we're all hanging in there. Thanks for all the GI tips…the plumbing is functional again! It would be nice to have two bathrooms….lol. Really tired over the last 2 days, poor sleep with the early a.m. awakening, but this morning, I tried doing an imagery type thing, and though I didn't fall back to sleep, my outlook was so much better. I feel like I'm a whoopie cushion but someone let all the whoopie out of me. Getting many of the same "sides" as y'all with the low energy, dizziness. You really do inspire me and give me hope that we'll all reach the other side of this thing whole (or in some measure). Good luck with your scan Cat, we're pulling for you! NJ, good to see that you've gotten something sooner with the ENT. Bird, I don't know how you keep your pace up. Bone pain is less but having a bit of a problem with catching my breath, which is probably part of the reason I feel tired. I tried to make do with a "messy hair" look today, but can't say I had any real success with that….homeless chic anyone? Here's to a better week for all of us!

njdogmom · June 2023

Iamnobird: Glad you are feeling back to normal and yes! I blame chemo for everything - from the wildfires in Canada to the lack of a season 3 release of Bridgerton, it's chemo's fault!

Cat: I hope the scan shows shrinking tumors! Keep us posted. Will be thinking of you.

Mouse: Please reach out to your care team about shortness of breath. That's a side not to mess around with. Glad the bone pain has lessened and perhaps add earrings to homeless chick look. Messy hair is trendy! There's a genre of youtube videos about creating intentionally messy hair. 😀 I'm sure you're rocking the look!

I won't make our Friday chat this week because we have an appointment with the vet radiologist at 11:00am. I'll miss chatting with you!

ENT appointment was uneventful. I need a CT scan on my sinus to figure out the path forward.

iamnobird · June 2023

Maybe we should move our chat this week? It sounds like it is difficult for Cat also. And Friday evening is a bit tricky this week for me as well. I am feeling okay and we are doing a little date night. Just out to eat Georgian food and perhaps a fancy mocktail at a nice bar. Are Mondays good for anyone? I know it isn’t a chemo day, but am wondering about appointments and such. It might be easier for me as I am reliably home on boring Mondays. While I am such a party animal on Friday 🤣🤣.

Mouse: I hope that you are feeling better and that they can shed some light on shortness of breath. That is always asked about when I meet with my oncologist so I agree that it is a significant symptom to mention. I really am not that energetic. But I am only 51 and on a lighter dose of chemo at the moment. I definitely feel like the oldest 51 year old in the world some days. It sucks to still have kids at home that you want to give a sense of normalcy to.

NJ: Ugh, I hate how appointments always lead to more tests and wish it had been a quick fix Happy 12 to you! I hope you can do a little celebration at some point. Maybe after you get insight from the vet oncologist and a plan. Things are always better once there is a plan ♥️

Cat: Thinking of you today! I actually am still a member of the cold cap FB group! I had just snoozed it when I had my little pity party. But, I have to say that the folks keeping hair during AC seem pretty few. Most end up looking very crypt keeper chic and I honestly think that might freak me out more than a shaved head. Ah, the dilemma!

Not much today. I am taking my kid downtown to the dentist. I am feeling pretty good. I so wish my husband didn’t have to work most of the weekend. I really, really want to go to Tallinn, Estonia on Sunday. But my husband thinks any type of boat is a bad idea as it is a floating Petri dish. Several of Chris’ colleagues have Covid now so it is clearly in the mix as well. So we will probably stay here and maybe buy some new plants for the yard.

njdogmom · June 2023

I'm all in favor of flexibility and we can pick a day week to week as far as I'm concerned. Add to that that we can still be flexible! Nothing currently scheduled for Monday morning this week. Crash lasts into Monday and I usually don't have the energy to chat yet of all the people in the universe, I'm totally good with speaking with y'all during crash. Now that's true love! ❤️ I look forward to chatting in the coming days!

Iamnobird: Agree, a` plan is a good thing. While it adds more things to juggle in the calendar, it's sure better than not having a stable calendar.

Shopping update:

I ordered a couple of these bras:

AnaOno

I had to exchange them and size down. They're super soft and not as compressing as other compression bras. Great for sleeping. Normal size in Wacol bras is 42D which would be 3x. Sized down to 2x. Probably could have sized down to XL. I loved the positive body images and that many of the models are in our age group with real world bodies. Would put the bra I linked in the light support at best category. Guessing it's the trade off for soft fabric.

Chemo update:

Blood work was as expected. Numbers continuing on downward trajectories. Number after the slash is low end of normal for reference. WBC 2.95/4.0, RBC 3.36/3.8, Hemoglobin 10.6/11.5, Hematocrit 32.0/35.0
Carboplatin was available. I had a respiratory reaction about 15 minutes into a 30 minute infusion. Infusion was paused. Was given all sorts of additional drugs including more steroids and Benadryl. 12/12 finished.
Paclitaxel was held back per oncologist instructions
Officially past the neoadjuvant half way mark!
Nurse mentioned that I should be okay to drive to/from A/C chemo. Take a wait and see approach.
The oncologist mentioned
- She recommended skipping paclitaxel this week due to peripheral neuropathy showing up last week. I was on board with the plan since this side can be permanent and don't want to literally add insult to injury! 11/12 is pretty darned close to the target. She asked me to walk on tip toes. Seems this is a rough measure of the damage.
- Colony stimulating starting with AC and said that hopefully I'll be going home with the shot.
- Chemo teaching for round 2 will be scheduled some time next week.
- She agreed it is reasonable to do an echo since the last one was done back in February. I was happy about that. More monitoring please!!

catm · June 2023

Hi gals,

So nice to hear from everyone and I am glad that, generally speaking, we are all hanging in there and pressing on. I've been very tired this week. I can feel the chemo's cumulative effects. I continue to typically be waking up around 2:00 am and then I am UP with my BFF's "The Sides" which keep me busy for several hours. Today I fell back asleep from 9:00 am-1:00 pm which actually felt really good.

I'm in favor of moving our call tomorrow, Friday, to Monday. I am wide open on Monday.

I saw the breast surgeon yesterday and she did an in-office ultrasound of the "c" breast. The tumor has gotten smaller, though she said it is hard to tell with that imaging. However, she said it was more significant with HER2+ that the tumor hasn't gotten bigger. I consider this good news and I will take it!

Gals- the Metamucil really is helping me. Mornings are "busy" but the rest of the day is much better. Just sharing as my dr said it is good for diarrhea and constipation.

Dogmom: wishing you all the best tomorrow with your fur baby. So hard. Glad you saw the ENT and WAY TO GO ON 11/12 treatments! All of this will be behind all of us soon!

Bird: Having an important guest come to town sounds very tiring. I hope it goes well and also bummer about the parade but I think you are right- avoid crowds. I'm really thinking "NO" to the upcoming wedding in July and probably the other 2 as well.

Mouse: agree with others- notify your team about that shortness of breath. Are you sharing a bathroom with your husband? That would be tough. I am very thankful for my own bedroom and bathroom in my house. And here's a funny. I just recently realized the potty in the bathroom I'm using is quite low. I think it's a child's potty from the previous owner. Awfully low! I have a new tall throne ready for the plumber. I am EXCITED about this!

My brother arrives tomorrow and I am excited about this as well. My husband and daughter are out of town tomorrow night so it'll be nice to visit, just the two of us. Sunday, I thought we might cook a Fourth of July spread like my mother liked to do with her recipes. (He likes to cook.)

That's it for now!

Sending hugs,

Cat

njdogmom · June 2023

Catm: I fantasize about chair height toilets with built in bidets! I was thinking perhaps one of those in my master bath as a 1/2 way gift to self. I have to price them out.

iamnobird · June 2023

Good morning friends!

Okay, Monday it is. Noon eastern to keep it simple? But with flexibility built in there

Y’all are cracking me up on the toilets. Happy halfway gift! Thankfully we do have 3 in the house, but none are my very own. Although I could boot my husband to another one and might if I have significant issues in the next go round. Bidets are brilliant. All Finnish toilets have a bidet attachment, but it is like the diaper sprayer I used when I cloth diapered (I am totally that crunchy lol) It isn’t great, but does the job.

Cat: That is good news on the tumor! HER2+ is so obnoxious that not growing is excellent. And it sounds like there is also some shrinkage. Your time with your brother sounds fantastic. I love that you both enjoy cooking and might do a sentimental July 4 spread. And I just ordered the Metamucil. We have so much stuff in the cabinets for diarrhea and/or constipation. So will your next TCHP be the last of that type of chemo? If so, you are almost there!

NJ: Wow. Lots of news there! First up, congrats on the last Taxol/carbon. I think it totally counts as completion. Good job and time to move on! They do echos every 12 weeks so I had one in late March and a couple of weeks ago. Sounds like you are the same. My blood work looks pretty similar I think. Is the plan to start the AC next Thursday still? And thank you for the bra recommendation! They have been recommended quite a few places as they have bras for DIEP folks and I am struggling with that. Underwire generally isn’t recommended right now and a lot of bras really cut into my back area and where the lymph nodes were removed. Which still has some swelling and such. I think my insurance will even pay for some bras from AnaOno so I am going to order and try to claim reimbursement.

Mouse: Glad things are moving. The guided imagery for early morning waking is a good idea. I need to try that. I think upping my yoga and meditation (pretty nonexistent) is a good overall plan. I hope you are still feeling okay and that Monday can work for you.

Let’s see. Here are some of my favorite things that are helping me out right now.

The vinegar rinse stuff is great. It lets you be super gentle with your hair, but cleans your scalp and leaves hair soft and scalp moisturizer and healthy. And the other stuff is a lifesaver if you need it.

Amazon.com : Medicine Mama's Apothecary Vmagic Organic Vulva Balm, Intimate Skin Care – Hormone Free – 2-pack (2 Oz ea) : Health & Household

https://www.amazon.com/Medicine-Apothecary-Vmagic-Intimate-Ounces/dp/B00KKC5XWS/ref%3Dsr_1_1_sspa?crid=3QVZOWKOIPBX3&keywords=Vmagic&qid=1688118423&sprefix=vmagic%2Caps%2C221&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1

Amazon.com : Medicine Mama's Apothecary Vmagic Organic Vulva Balm, Intimate Skin Care – Hormone Free – 2-pack (2 Oz ea) : Health & Household

https://www.amazon.com/Apple-Cider-Vinegar-Hair-Rinse/dp/B01NAHOR2C/ref%3Dsr_1_1_sspa?crid=3CC9G6DJ6OJ70&keywords=Apple+cider+vinegar+rinse&qid=1688118233&sprefix=apple+cider+vinegar+rins%2Caps%2C211&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

Other things that spark some joy are homemade peach iced tea syrup. I’ve been buying peaches and making peach simple syrup and it is SO good. Coconut water is another thing that I love. And I have gone insanely crazy about salad. I’ve even been making sandwiches out of lettuce leaves stuffed with chicken and cheese and veggies and they are so good. Ha. Protein is definitely a current craving of mine. I don’t eat red meat so get it from eggs, chicken and fish. Gosh the salmon is SO good here because it is really fresh.

Okay. Take care! I am going to nap a bit as I’ve been up since 5 for no good reason.

njdogmom · June 2023

Peach tea sounds wonderful! Adding it to my list of things to make this week!

Catm: So happy that your tumors are responding to chemo and any good news is good news! Sending much love and good vibes your way! More sleep whenever you can get some is a good thing. Our bodies work hard healing us during that time. "c" is a full time job - managing sides, managing diet, managing stress levels, managing appointments, absorbing information and making decisions. My tumor wasn't notably smaller until recently - maybe 8 infusions into this. The oncologist is happy with your progress and that's what matters! Enjoy your visit with your brother!

Bird: I have several bras to share info about. Will dig them out and post later this evening. One given to me by a neighbor with velcro closure and drain loops. I need to size up on that one. One given when I had second biopsy that they told me to bring when I have lumpectomy and the AnaOno bras The rest of my sports style bras are non-surgical. I wouldn't run on the treadmill in the AnaOno - even sized down. The one given by the hospital is much more supportive but not even close when it comes to softness. Not getting any shape assist from these AnaOno bras either. But oh so comfy! 😄

Mouse: I hope your are feeling better and that you got in touch with your care team re: shortness of breath. Thinking of you and sending healing thoughts!

Bidet topic: Diaper sprayer? I have no idea what that is. Send photos please! So it looks like this will involve a plumber, an electrician and a toilet. On the bright side, there is power in that area of the bathroom so should just be a new outlet. Shower is close but not sure if I can get a hot water line to that wall without tile work :\ I might have to find one that can heat the water. Ugh. Another project!

Digestively, everything was perfect last night and then back on Imodium this morning just in time for the long drive. Ugh.

iamnobird · June 2023

@njdogmom

https://en.biginfinland.com/hose-always-next-every-finnish-toilet/

https://en.m.wikipedia.org/wiki/Bidet_shower

We had proper standalone bidets in other houses so this one takes some getting used to it. It is quick and cheap and effective though. When our kids were little, we had this sort of system hooked up to the toilet for spraying down cloth diapers before putting them in the wash pail.

iamnobird · June 2023

Thinking of you today. Let us know what the vet says and stay safe.

corduroy mouse · June 2023

Hi ladies,

So glad y'all are moving the live chat to Monday. Got a call this morning that there was an opening for a hearing test. If all goes well, I can order the hearing aids and have the fitting and settings done in 2 weeks. IMHO, I think it's absurd that most health insurance plans have almost no (or very insufficient) benefits for hearing aids. My surgeon speaks really softly, and after my surgery, I could not understand a blessed word the man said. I also didn't bother to turn on the TV, since I can't hear that either and couldn't figure out how to turn on the closed caption. That was the portion of my treatment that I considered "more isolated than I could have imagined." I have an appointment on Monday with my oncologist, so will mention the shortness of breath (although this has improved).

Cat - I'm happy for you that your tumor has shrunk. You ARE responding to your treatment, even if it requires your full-time management. Right now, YOU are the most important person in the universe. You were put here for a reason, and you are a precious soul. I get the poor sleep. Thankfully, I've had better sleep for the last 2 nights (luring the cats out with treats and shutting the door secure behind them, doing guided imagery, and making plans to do more writing in the near future. I found myself re-experiencing my father's storytelling as if I were sitting there all over again. Use your weekend to rest and take care of yourself, and enjoy your visit with your family….let THEM take care of you (at least they will have something to do!).

Dog - thank you for the info on the bras. I'm going to check those out. I like my sports/compression bra….BUT….I still have either extra tissue/edema at the lateral edge of the mastectomy scar, and it cuts into my skin a bit….softer wold be better. As a Uniboob, I have now a size wow left breast and a sort of flat whatever bunch of tissue on the right. Mastectomy prosthesis and bra fitting next Friday, but I'm worried about the added weight to the right side. I have severe degenerative disc disease in my cervical spine, but have found some relief since the mastectomy). I've had the colony stimulating factor (not Neulasta, as it wasn't covered by insurance, but a bio-similar), but it didn't come as a self-injectable or auto-injectable, but the infusion took less than an hour. Ask your oncologist about taking Claritan (loratadine) before and after, as that helps to smooth out some of the histamine released by your bones while they are repairing your immune cells. It's scary that you had the respiratory problems halfway during your cisplatin infusion. BUT….you're halfway through your chemo….Cheers! Keep hanging in there…..you will CRUSH this.

Bird - You're husband makes a fair point about the petri dish effect from boats. My hubby would never consider a cruise, and I won't board an airplane….we'll either have to drive, train, walk, or row if we want to see other parts of the world…lol. I totally love your reference to the crypt-keeper chic….not much of an aesthetic there. Bidets were the thing in this country a while back, and I know they had them when we visited the Dominican Republic years back. It would sure cut the water bill when getting the sides. A bidet seat….you know, I think I saw that online at some point (maybe during COVID)…might need to revisit that one.

Whoever mentioned diaper sprayer….that would have been a great thing to have! I read online about the virtue of using a household sprayer with water, but honestly, I can't even get those to work when I am facing forward.

To all, have a wonderful, restful, "sides-minimal" weekend and remember to savor every last minute of it. I've reconnected with a high-school best friend who was maid of honor at my wedding (also a NY Bestseller List author), and I am getting to know her all over again through this cancer journey, inspired by your stories of courage. I so enjoy all of your company, your honesty, advice and compassion. You all are the BEST!!

Mouse

njdogmom · July 2023

Bird: Oh my goodness! They had those in the hotel and office bathrooms in India. I thought they were for cleaning the toilets! I feel very unsophisticated.

Mouse: The whole hearing aid/health insurance issue is just disgraceful. I'm glad you have an appointment and will get that issue behind you! I can't imagine going through surgery and not being able to hear instructions. We were so happy that you found us. We are a bonded sisterhood. Thanks for the Claritin suggestion. I have that in the meds basket on the counter. I was told to take it for something else a couple of weeks ago but can't remember what. Did I mention chemo brain? haha

Cat: Thinking of you and hoping you're having a fantastic weekend! Right about now, I'm wondering if I can mix Metamucil in a glass of red wine because, hey! it's Friday!

Dog update: The vet radiation oncologist was outstanding. I can't say enough good things about Red Bank Veterinary Hospital. She showed me his x-ray and explained that while stereotactic radiation is an option, it may not be the best option because the bone is quite thinned out and there is a higher likelihood of a bone break once he's not in pain and becomes more active. She suggested that if I still wanted to explore that option, before making a final decision we should get a CAT scan to get a more detailed view. The vet also suggested getting an updated x-ray to make sure there aren't new mets from the past month. I'm currently leaning toward an amputation. It resolves the pain issue, removes the concern of breaking the bone and is the most direct path to some sort of playful, tail wagging recovery for him. I need to sort out how I'm going to care for him during AC phase which starts this week.

Bra links to come. I need to eat something. Be back in a bit.

njdogmom · July 2023

The other bras:

Given to me by a neighbor. Also soft and comfy but the long strip of velcro is a bit lumpy and visible under tee shirts. Otherwise very nice. Better compression and a silkier feel than the AnaOno but not as comfy for sleeping.

https://mastheadpink.com/product/elizabeth-surgical-bra/

The one provided at the hospital post biopsy - Prarie Hugger Prima. I really like the compression on this one. Nothing moved. No jiggles. Nothing shifted when bending to tie my sneakers. Treadmill ready!

https://www.prairiewear.com/collections/post-surgical

iamnobird · July 2023

Good morning!

NJ: I am so glad that the vet was so awesome and able to give you more insight. I am sure that if amputation is the best path, he will do so well with it and hopefully have lots of pain-free, playful time with you. I hope that you can find somebody to perhaps come by and help with the dogs during AC. Rounding up the help ahead of time is so smart. Thanks for the bra recaps also. I wore surgical compression bras and a binder 24/7 after my surgery for 6 weeks. It was so miserable in many ways. So I can’t look at those bras at the moment. One silver lining of the surgery is that my boobs are much perkier because one is the DIEP and the other is lifted. So I don’t have to wear bras with as much support at the moment and they are still upright. Ha. They are still big though. I actually don’t think I will mind if I lose a bit of size in radiation and then we adjust them both. My PS said losing about 10 percent volume is normal. And I freaking forgot about your allergic reaction! Geez. What was that about? So glad that part is done. Onwards. Hoping your crash isn’t too awful.

Mouse: Yes. My friend bought one of those bidet seats off Amazon and loved it. She can’t get it to work on Finnish toilets and is so sad. The Finnish bidet experience is not a luxuriant one. At all 🤣🤣. I agree. This group is really great and I am so happy to have the support. We are also quite positive. We all acknowledge sides and hardship, but we are all still living and focused on getting through as gracefully as possible. I am so glad you are sorting out your hearing aid stuff. I keep forgetting that you have also had surgery first and I can only imagine how isolating and frightening the hearing issues made it. And I totally agree. I’ve never understood with insurance stuff why eye and ear issues somehow became “extras” that don’t need coverage. I think you will like the AnaOno bras as the have ones specifically for “unicorns” in your situation. They are also supposed to be cut taking into account the scar tissue and soreness under our boobs after surgery. I have the same issue and even comfy sports bras can be painful. I’ve had a hard time finding the right one. You give me hope as you seem to be managing well after you first treatment. I know it isn’t a picnic, but I am encouraged.

Cat: I hope you are having the best time and barely thinking about cancer.

So since I didn’t do chemo this week, I decided to see what omitting the daily antihistamine I take for rashes does. Well, guess what? There is clearly plenty of stuff still in my system and the rash came back all over my arms. So I am back on it and it has subsided. Lesson learned. I also think I might be having some cording which I thought wasn’t an issue. I am going to arrange an appointment with the physio at the hospital. It is Saturday. Hubby went to work at 5 am. He has promised he doesn’t think he will be there all day. We shall see. It isn’t his fault and I feel bad for him because he is SO stressed, but I am a bit grumpy that this stuff has really interfered with what I suspect might be my last good weekend for a bit. I have also decided to reward myself with a girls trip back to Vienna in early December to hit the markets (my favorite thing in the world) and see my friends.

iamnobird · July 2023

Sharing this link. She is a breast cancer surgeon who developed breast cancer. She now provides concise, factual commentary on new research. I really find her a reassuring resource.

https://youtu.be/pT2aHKCrCOw

corduroy mouse · July 2023

Dogmom - I am so happy to hear that there are options for your pup. My husband follows several Twitter accounts about dogs with disabilities, and it's amazing to see how well thy adapt after an amputation. I saw a YouTube video yesterday which really inspired me. There had to be 50 dogs with either some form of amputation or perhaps spinal compression where they no longer had use of either back or front limbs. Most of them had something that looked like a racing sulky attached by a harness so that they could all go out for a run together. Your own cancer journey will inspire him!

Bird - I had initially thought I didn't want any sort of reconstruction, that I would just go flat, but the scar is way larger than I thought it would be (the breast surgeon was great, but he's not a plastics guy). Though I don't relish the thought of more surgery at my age, I think I'll ask them to remove any additional "baggage" on the mastectomy side and get rid of the implant (it's past it's "good by date") and get it to also be lightweight.

Cat - I'd just about kill for a glass of wine right now, but my oncologist had told me that with the type of cancer and the extra-nodal metastasis, alcohol might actually accelerate any secondary cancer in the other side or metastasis to solid organs. It was hard going to the store and totally bypassing the wine aisle the other day. I hope your sides are getting more tolerable.

Since I start back at work next Monday, I'm trying to get in appointments and try to carve a little space for myself. The oncologist asked to move my appointment up to 1 pm tomorrow, so I won't be able to make the call. Y'all will have to give me a run-down…lol.

Okay, funny story… I really am not fond of my neighbors (across the street and next door. It's like I'm in some kind of weird reality show that is a mix of Jersey Shore, Pickers, Hoarders blended with the Oak Ridge Boys (two brothers, one of whom looks like a homeless Jesus). Anyway, Jesus was knocking at my door, accompanied by a well-dressed, articulate, young black man with hair done in tidy braids down to his shoulders (as opposed to Jesus's disheveled appearance, bare feet, meth mouth, and inability to put a coherent sentence together. He says, "Miss Sandy, I'd like to introduce you to my cousin, Artemetius. We was wondering how you was doing?" (I was actually wondering what relative they might have in common, thinking it might sound a bit like the song, "I'm My Own Grandpa." I imagined that his mother had probably repeated information which I had told her in confidence. I told him that I was recovering from surgery and receiving additional treatment. After I told him it was breast cancer, you could see that the two of them were having a hard time not staring at my chest…lol. Anyway, Jesus says in his hillbilly dialect., "Oh Lord, not the breast cancer! My granny had that and she died!" He looked at me like I was going to drop dead on the spot. I told him, "Well, I'm not dead yet, I'm too old and ornery to die." I think he was kind of disappointed, since he and his brother have been found like waiting vultures outside the homes of newly deceased residents, just waiting for the "all clear" sign so that they could snag things to sell at their never-ending tag sale. Hoarders, Pickers, and hillbillies. At least there's something entertaining going on…lol.

To all of you, I wish you a happy weekend and if you're in the States, a very happy Independence Day!

catm · July 2023

Hi gals-

12:00 Monday for a chat sounds great!

I went to the pool yesterday with my brother for a bit and he spotted (on the subject of toilets & bidets) that caught his eye. We DID move our chairs over when the space became available but concluded we’d need to cut a hole in the canvass chair. Do you see what I see?

catm · July 2023

Mouse: I thoroughly enjoyed your story of the neighbors pooping over. Wow! On so many levels. At first I thought they might be genuinely concerned but some of the shine came off of that thought when you shared their picking & yard sale angle.

Mouse: really glad you have an appointment for your hearing device & generally speaking seem to be doing well under the circumstances?

Mouse: I feel very supported by this group as well & thank you for all your supportive & kind words.

Dogmom & Bird: looking forwards to catching up tomorrow!

Cat

iamnobird · July 2023

Hello ladies!

So I just spent the day getting my first EC chemo and it was all very uneventful. The medicine is indeed bright red, like Koolaid. And the C part, cytoxan, made my nose feel funny during the infusion. It was like when you eat wasabi, but not as dramatic. Just this weird stinging feeling. I googled it and asked my nurse and it is a thing. Although more common is just sneezing during the infusion. Nobody thinks I will keep my hair but they humored me with the cold cap. They said they have seen folks keep bits of it so I can decide whether bald patches or a shaved head is more my thing. I am actually on what they feel is a game changer for nausea, it controls it for 5 days. It is called Akynzeo and is given with steroids an hour before. Then I have 2 additional meds for any breakthrough. They seem more concerned that the bone pain will be bad for me with the injection. I did get a bit stronger painkiller for that and instructions to dose myself up regularly even if I don’t have symptoms to keep them away. My husband will inject me tomorrow night before bed. All of my blood work was good although my red blood cells are on the low end of normal. I was always anemic during pregnancies so that isn’t a surprise to me. I didn’t get the Benadryl so I was actually awake the whole time. So I do think I could have driven myself. I don’t feel sick at all, but not as well as I usually do after the infusion. Just tired and a bit listless. I’m in bed now, but will move downstairs in a bit.

Mouse: Those sound like some neighbors! Good response! And I have the same reaction in people. Any mention of breast cancer surgery and they are staring hard at my chest🤣. I hope you are feeling well and got you hearing aids ordered.

Hi NJ and Cat! Hope the sides are treating you well.

Happy 4th to everyone! I have modest goals, mostly to stay out of hospitals. So fingers crossed!

Starting chemo April 2023

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