Starting chemo April 2023
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Hi all! We'd love if you could take a minute to take our quick poll about the shortage of certain chemotherapy medicines:
We appreciate your help!
—The Mods
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Hi gals,
Dogmom: sorry for your nausea. I’ve recently had several similar nights. I’ve noticed it’s happening to me at night and on days when I’ve been on the go without any rest. Hope you woke up feeling better. Gosh I’m sorry about your hair falling out in handfuls. I’m sorry too Bird for your shedding. It must be very distressing. 😔Dogmom, I’m hoping your ENT surgery can happen after your breast surgery. I think that’s what I would want. I’d feel overwhelmed at doing the ENT surgery before the breast surgery. Is that what you want?
Speaking of….. my DMX is scheduled 10/19 at MD Anderson. I feel very good about the surgeon performing the surgery. She’s highly skilled and her standard of care has surpassed the Atlanta surgeon.I had bloodwork this am. My labs look good so I’m glad about that. I’m also glad that the antibiotics seem to be working on my face rash.
Bird /Dogmom: How many rounds of AC/EC have you each had now?Bird: How’s your incision looking? Glad progress seems to be being made with your parents and their next steps with living arrangements to accommodate their conditions.
Bird: I have a Natural Life headband (have had for years) and enjoy it! As far as the Namjosh headbands go, I find them surprisingly comfy and easy to wear, plus I do literally have a large head so it’s encouraging that they don’t did into my head.
Last night was very fun at my friend’s house. The Sides took a rest for the evening and I actually had 3 glasses of wine! I wasn’t going to have the third but my friends poured and I drank it. I’ll take it easy the rest of the week. 😉
I’m off to the Barbie movie tomorrow night with my daughter and son. I’m looking forward to it!
Cat
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Cat: I should write Ode to the Nap. I really believe it either keeps the side effects at bay or that I sleep through them so I don't know about them. I did feel bit better when I woke this morning. Thanks! The ENT and oncologist will figure it out. I think the ENT has a goal of getting the surgery done to avoid infection during chemo and the Oncologist has a goal of getting me through chemo so we can get to the lumpectomy. Either way, I'm thinking antibiotics in the interim is a good plan. The ENT has me on Clindamycin. Glad your labs look good! I'll be getting round 2 of 4 tomorrow.
The pup-pup had his x-ray this morning. No lung mets so he's scheduled for his amputation a week from tomorrow.
Swedish Death Cleaning Update: Duplicate measuring gadgets, pots and pans I haven't used in 10 years, 2 trash bags of shirts that I didn't like much when I got them and have liked even less since and bras that no longer fit,
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NJ: Thinking of you today and hoping cycle 2 treats you well. Thanks for the links on the tube scarves. I am so happy puppy doesn’t have lung Mets and that amputation surgery is scheduled. I am hoping you feel well and that all goes smoothly. And good for you on the cleaning count. I do love a good purge. That might be one silver lining of moving every few years. I have replaced a lot of items with merino wool lately, like tshirts, leggings, etc. So I find that I reach for other stuff way less. I could definitely stand to purge some more tshirts.
Cat: I am so glad that you all had a fun night out and that the sides gave you a break. And how great to have the surgery scheduled. I love my surgeons as well. My breast surgeon is so precise and excellent and my DIEP surgeon is a highly skilled badass. Confidence in a team really is a huge thing. I had no doubts I would have good results because both of mine had done so many of these procedures. I am glad your blood work is all good as well.
Not having a great day here. Steroids have worn off. I am not super into food and it was tough to find something that sounded good. My fridge and my pantry smell gross to me. I have the metallic taste. I ended up making a pineapple rice egg sriracha breakfast bowl. Which was weird but good. This is totally like pregnancy morning sickness. And, at least half of my remaining hair, decided to liberate itself from my scalp during the shower today. It was insane. I just kept grabbing handfuls of it. Don’t worry. I guess I have gotten used to the idea of it so I am not happy but not overly distressed. This feels a bit like a science experiment. I’ve oiled my scalp now and am letting the remaining hair dry. This scalp oil feels lovely.
Then we will see what I do. I think there is still enough to look cute under a scarf so we might continue down that path. Or we might shave it. Like a homage to Sinead O’Connor🤣. I loved her album so much. I just found it on vinyl and rebought it a few weeks ago.
My wound seems closed back up for the moment so I will take that. I’m still keeping it bandages with silver dressing so we will see what the surgeon says tomorrow.And that is all she wrote for now. 😁
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Good morning!
Sorry that you're not having a great day Bird. The food smell aversion thing is very annoying and the metallic taste issue seems to get worse with time too. Glad you found something to eat! Even oatmeal smells weird to me lately. It might have to do with food temperature too. Seems I do better with cold or room temperature food. I'm in the same situation with hair. I'm probably at the 50% left mark. I was thinking about shaving but I might wait a week or two and enjoy what I have left while I have it. Glad your incision is behaving. That was a huge worry! Rather than say how much I slept yesterday, it might be easier to say how long I was awake. I think my total time off the couch yesterday was 6 hours and that was only because I had a vet appointment. I can't imagine how this next round is going to play out. I'm guessing that like everything else, we'll plow through!
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NJ: Indeed we will keep calm and carry on! Wishing you smooth sailing today. I’m sorry that your hair situation is about the same. I feel fortunate to have kept it as long as I have though. I made an appointment for my wig fitting tomorrow after my doctor visit. I’ve got no clue how it works here but this wig shop has been doing this since 1921 so they likely have some ideas 🤣. I’m feeling a little vulnerable about strangers seeing my hair this way. But I am trying to get over it.
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Good morning gals,
I want to say how much I appreciate both of you and your posts, the honesty, humor and transparency. I think my side effects are likely going to be very similar when I start AC next week, including the hair loss. I know AC is known to be very tough on the hair and hair retention. I’m sorry you both are experiencing serious sheds but as usual, you both are facing it head on and with very positive attitudes.Bird: glad the incision is closed up for now. Ugh about feeling puny and nothing tasting good. I’ve heard this is a common side of AC/EC. I hope you can get some rest and maybe feel better.
Dogmom: I’ve also heard serious fatigue is a common side too to AC. I hope you can get some rest too and are feeling ok. Glad no Mets in the lung for pup pup.
Not much going on with me today. Went for a walk. Have an echocardiogram at 12:30. “Barbie” movie tonight with the kids. I’m feeling pretty good today. Am tired of the nasty face rash and am hoping the topical cream from the compounding pharmacy arrives today.
And that’s all she wrote from the ATL today!
Cat
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Cat: I appreciate our crew too! The candor and humor help keep things in perspective. I love that we don't have to feel weird about walking the line between needing life saving treatment and wanting to have some dignity through the process - like hair, lovely nipples and boob lifts. I love that we can share our fears and triumphs. I love that you are all just a phone call away and that you "get it." I could not have hand picked a better group of women to hang with than (checks notes for plural form) all y'all.
Bird: I totally hear you on the strangers seeing the hair situation. The woman at the shop was very understanding and complimentary. Impressed that I still had as much hair as I had. I didn't feel weird working with her at all. My friend Concetta showed me her hair regrowth today - I was psyched for her. She has some very good buzz cut length hair, perhaps a half inch and full head coverage!! She really doesn't need a head scarf anymore but she's still wearing one. As with everything else in this process, I think we discover new versions of ourselves as we go, both strong and vulnerable versions.
Mouse: I think of you each day and hope you are responding well to treatment and that you are healing and resting.
Infusion took forever today. There was a mess up with the pharmacy so was delayed while they sorted that out. Bright side is the safety process is working - it was caught before the drug was given to me, but it really delays infusion when they screw up. I came home to dog poop and pee on the floor. Keeping it positive - they went on the tile rather than the hardwoods. 😀
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Hey dear friends! I appreciate y’all as well. It makes all of this feel less lonely. It helps to have friends going through the same thing. I’m so thankful we linked up.
I saw my surgeon today who thinks the wound looks great and is healed up for the moment. He said he was greatly relieved to see how well it looks as he was worried when he saw “wound reopening” in my file. He checked it all out. Bad news, no baths for the foreseeable future. But we are hoping that we can keep it from reopening by being very proactive with the silver dressing and antibiotics again if necessary. We also stopped by and got a wig. It was interesting. Not a ton of English spoken, but I did find a wig that I like and I was able to take it home with me. We also had a nice Italian lunch. With tiramisu. Because I deserve a treat 🤣.
I am throughly tired of the constantly shedding hair remnants so I do think we are going to shave tomorrow. My wig will fit better and I will be done with hair falling everywhere.
Okay, more nurse Marianne wisdom, she says that after EC is a period when they have killed all adult cells so the ones left in charge are the teenagers. Teenagers don’t really understand how things work and also forget to eat so we have to be diligent and pay attention to things that the adults usually handle. 🤣🤣. She said to keep a food log when you aren’t sure you are eating just to make sure you do so regularly.
Cat: You are realistic, but I am still rooting for you. I think you have been adhering to all the rules and the really long post treatment cooling and I am really hoping your hair stays put. Remember, I haven’t done any pre or post cooling and my caps definitely don’t fit properly. It is a bit amazing that mine hung out as long as it did😁. It would be lovely to see you make it out with your hair.
NJ: Ugh. Sorry about the puppy mess and the long day. We had to wait a bit for the pharmacy at my last treatment also. I love that regardless of location, there are SOCs regarding management of meds and treatment, etc. It provides reassurance for me getting cancer treatment overseas. I hope you are feeling okay today. Or at least, not too yucky. I am psyched that your buddy has some hair back in place. That will be us soon. Watching hair grow in rather than fall out. And I see what you’re doing with the all y’all 🤣. Clever.
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Good morning.
Bird: So glad you found a wig you like, that you got to try it on and take it home with you! I was thinking yesterday that the day is coming soon. Each time I push my hair behind my ear, my fingers return with a dozen hairs. My wig is still on order but for the sake of my vacuum cleaner, I may need to get a short pixie today. Will see how icky I'm feeling later.
Cat: Regarding being realistic, cold capping will help you keep at least some of your hair. And if your hair is long enough that you can style it for coverage, you may never need a wig. I'm still in the don't need a wig stage and based on Bird's photos, so is she. I think we're both just annoyed by the shedding. I plan to continue with the cold capping through to the end.
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Eeek!! I forgot to celebrate! Half way though AC chemo treatments!!
😍
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Woohoo to halfway! Definitely time to celebrate! New wig for grins. I’m working on management of the disappearing brows.
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Morning gals!
Dogmom: woo hoo to the halfway mark with the AC! I’m eager (yes eager) to get started next week so that I can see how I respond and get the 8 weeks over with! I hope you both continue to feel ok, with manageable sides.
Hair We Are: Bird, am loving that wig on you! It really suits you, so natural and love the soft wave. You look really pretty! I think my hair loss is probably more like 40%-50%. The hair I have is dry and dull but I still hope I can keep it. The fancy thick head bands cover a lot and take the eye away from the hair. On a different note, the antibiotics and compounded cream are helping with the nasty face rash. Walking around with the nasty rash was getting to me a bit. (BTW Barbie had a lot of nice wigs last night! Very fun movie!)Cold capping: even if we lose our hair, I think it’s a good idea to keep cold capping. My understanding is that it can help preserve the hair follicle for future hair growth.
Bird: delighted your wound is closed and healing. Bummer about the baths. I love Nurse Marianne’s “teenager cells” analogy- that’s a good one! (And I’ve had the kind-of acne to accompany the teenagers! Ha!)
The Vent: ok so I’ve been pretty good about not complaining about PEOPLE and annoying comments but now I just need to vent. I’m headed to lunch with a BFF today for a belated bday lunch and it’s one of those situations that I need to do it to get it crossed off my friend’s list, or she’ll just keep rescheduling. I’m not looking forward to it after 2 comments yesterday. She’s one of my dearest friends but somehow manages to be in the “toxic positivity” camp. (I picked that expression up recently and I think it’s perfect for those folks who are constantly pointing out all the GREAT things about this BC.). Anyway, she texted me how she’s trying to live life to the fullest, make every day count because none of us knows how long we have blah blah blah…. Implied in this is “because one of my best friend’s has bc”. I gave it a thumbs up then ignored it. Ugh!
But here’s the whopper from yesterday. Had my EKG. At the end, the tech said (I’m not making this up), “I saw your breast cancer diagnosis and I thought oh no! That’s just terrible. My sister died of breast cancer. My dad also died of cancer. My aunt also died of cancer. My mom just died too. It’s just me and my niece now. It’s very sad.” I just said “ I’m sorry for your losses” and left. He was rather odd during the testing. He might’ve been on the spectrum, seriously but I really didn’t need all that. It was like a sitcom episode.
Thanks for letting me vent! I also have a dinner with a few friends tonight. After yesterday I’m kind of dreading that too. I like my friends who allow me to just be me, like my family does, not all the attention and chatter around the little c. Need to use Dogmom’s “I don’t do cancer on the weekends”! Some people tho just have a hard time not bringing it up!
Ok, hopefully all that was my therapy session and I can brace myself for today and have good boundaries!
Mouse: thinking of you and hope you are doing ok.
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Cat: No worries on venting and I totally love "Toxic Positivity" as a category. Like nails on a blackboard, especially when it's intended to manipulate you into doing something you don't feel like doing like having lunch with a toxically positive person. BFFs need to start respecting boundaries. Plans are stressful for people dealing with sides. Plans are stressful for people with compromised immune systems. My therapist has been teaching me that what I want or need matters too, perhaps more than what others want from me right now. It's a work in progress. And what the hell was wrong with the ekg tech person? And in a medical setting! That's some pretty horrible bedside manner. Did he want your sympathy? Poor him. WTF?
Bird: Your wig is gorgeous and you look fabulous!! ❤️
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Cat: Yes to toxic positivity. Clearly a thing. And bestie needs to reign that in for sure. I mean, who wants to be told that they will emerge from this stronger, wiser (I was FINE before thank you). And not all clouds have to have a silver lining. It is okay to acknowledge that getting cancer can just suck. And your Echo tech?! Geez. Why would he tell you that? That is awful! Anyways. I really hope that you had a good evening. I am a to the manor born people pleaser so boundaries are so hard for me to manage. I definitely think NJ’s therapist is right. But avoidance is the only tool I have for managing these situations since I tend towards people pleasing. It’s funny. Everyone here that I meet is beyond nice, but I was thinking how I will be happy to move in 2 years because it will be a blank slate. I don’t have to be “the one with cancer”. Of course my friends and family know, but not the folks I meet in the new place unless I tell them. It is a chance to have a blank slate.
Thanks for the wig compliments. It is workable. I don’t know how often I will wear it but we will see. It is lightweight and easy to care for. And yes. I’ll cold cap for my last session even with no hair. Hopefully to give a jump start to the new growth.
NJ: I hope you aren’t feeling too yucky and are getting solid rest.
Not much here. Plan is to shave the rest of the hair at some point. Barbie movie is a go for tomorrow! Hubby and kids are going to a flight museum by the airport but I am not into it so will stay here. Maybe go for a long walk with my husband if I feel up to it. I have more energy. The shot has clearly kicked in.
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Ok! I am relieved that my hair is done! My husband was a trooper. The dog was VERY concerned. The kids have now seen old baldie head and we are all okay. No rip in the space/time continuum. My head is a normal shape 😂. I don’t think I am going to embrace this as my new style, but it isn’t as bad as I feared. I still have a lot of hair attached to my head.
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Good morning gals!
Thanks for letting me vent and for validating my feelings around these comments. I know I’m prickly but I also think these were comments that were irritating. Thankfully, lunch with my BFF went well. Only one round of toxic positivity at the end of lunch (how I’ll be stronger, know myself better, have better boundaries blah blah blah). That really gets on my nerves but like you Bird, I’m a people pleaser so I just listen and secretly get irritated! I like what you, Bird, wrote- Who said I wasn’t ok before all of this?
Dinner last night went well, thankfully. Nice group of friends with not too much “c” talk. My friend made a yummy summer dinner which was lovely. I do need to think on something though. One of my friends who was there last night (and fought breast cancer last year- lumpectomy and radiation) wants to have a “farewell to the boobs” party for me before my surgery. In short, I need to process this. It might be cathartic or it just might not be my thing. Stay tuned! And feel free to chime in on how you’d feel about said party. I’m likely going to say thanks but no thanks.Dogmom: I like what your therapist advises and thanks for sharing. Bird, I also appreciate you sharing the desire for a fresh start. All the “c” chatter and peppering (texts: how are you? Or I’m thinking of you and cards) are well intended but are also constant reminders. I get why some people choose to tell no one or just a handful of people.
Bird: I’m glad your head shave went well. That’s a huge deal and I am glad you are at peace with it. I am sure you are relieved to have it behind you. I hope you enjoy the “Barbie” movie- it’s very fun!I’m doing some Swedish Death Cleaning with my daughter. It’s great to get some things cleaned out and I’m letting her sell a bunch of things with her keeping the money from the sales.
That’s about it! Oh, thankfully my face rash is clearing up with the medication so I’m feeling a bit more “normal”.
Sending hugs
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Bird: Congrats on taking the plunge brave girl! It's a process. We're stepping through it and are nearing the other side. I'm not at all surprised that the dog was concerned. For as adaptable as they are to change, they're pretty sensitive to how we are feeling. I plan to do the buzz cut when I'm feeling a bit less zonked. I'm so done with shedding all over everything. I hope my wig shows up early next week. It would be handy to have it before the cut. Not feeling hungover yet, just really exhausted this morning. As of my last blood work, I'm a couple of pints low on all of the lovely oxygenating rbc related numbers.
The first thing I asked my therapist is "Am I invisible?" because I was saying what I needed and nobody was listening. What I've learned about boundaries over the past few months is that because I don't set them very often, people push back when I do. I was told to expect this. So the ABC method - Acknowledge that you hear what the person wants. Set the Boundary. Get Consensus. Eg. It's so kind an generous of you to want to take me to lunch for my birthday. I really enjoy your company but right now I don't know from one moment to the next if I'll feel up to leaving my bed let alone the house. I don't want to make plans. When I'm feeling better, I look forward to seeing you. I'll tell you when I'm feeling up to it. Okay? If the person tries to negotiate, just repeat the same boundary statement until they hear you. I hope that's helpful!
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Thanks y’all! I’ve been in bed most of the day though. I don’t feel that bad, but it was emotional this morning and I am just not feeling energetic today at all. The silk pillowcase really feels nice against my scalp now🤣.
NJ: Sending you lots of strength as well. If you are anything like me, the right time came because I was just so fed up with the hair everywhere and decided baldness was preferable. 🤣. But hopefully you can tolerate it until you get your wig. For me, having wigs is definitely reassuring. I’m not quite up to making a bald public debut. Although I will admit, it is a lovely way to hang around the house. Very cool. Today is in the 60s and raining though so my head is actually a little cold. Thanks for the therapist tips. Very helpful and something I can stand to work on for sure. I like the ABC method. Easy to remember.
Cat: So glad that your rash is better. That has to feel so much better. And give you more confidence. As to the farewell to the boobs party, I have definitely seen pictures of these. And some folks seem to really like them. I was not in the right state to enjoy such a party and honestly, putting on a public appearance before the surgery where I needed to look and act socially acceptable—upbeat, a fighter, fun and energetic—sounded just awful to me. But, I had only had 2 weeks to come to terms with the loss of my breasts and a major surgery. It was very new and raw and I was so frightened of surgery and what came next. I cried a lot and didn’t even take final photos or anything like that. Things definitely get easier with time and you have had more time to adjust to the concept. If you are feeling a party and won’t mind the societal pressures right before surgery, then go for it!
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Bird: Sending hugs. I hate that cancer puts us in these unthinkable circumstances. I anticipate a similar experience. Shorter hair felt good and it was an empowering experience but a buzz cut is feeling a bit like giving in rather than letting go. I may not wait for the wig. The constant shedding is so annoying and I'm so tired of it. It's made me cry several times. I just need to be done with it and move on. I have no more energy for the shedding.
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NJ: Aw. I absolutely hear you. If anything, I waited a bit too long to shave it. I cried too many tears over the shedding hair and had to really get myself ready for washing it towards the end. I don’t feel empowered by this, but it really isn’t the worst either. I’m still me♥️. Plus you have a lovely summer hat and other headcovers. Or bald if you feel bold.
Cat: Loved the Barbie movie. So great! That could have been a disaster and she did a brilliant job with it. We all enjoyed it. I also loved that there were a bunch of folks dressed up and wearing pink at the noon showing in Finland. It’s a giant shared global experience which is so cool.
Okay. I’m going to send y’all a bald pic and a pic of me at the Barbie premiere. Just in case it makes anyone feel better. It all sucks, but we’ve got this. Otherwise, not a ton going on here. I’m about to nap 💤 now.
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Hi gals,
Just a quick check-in to say that I’m planning on getting on our call tomorrow, Monday, at 10:00, if we are still on?
I’ll catch up on the boards later. Just anted to checkin about tomorrow’s potential call.
Thx
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Yes. I’ll be on the call at 10 as well. Looking forward to chatting.
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As always, chatting with our crew is everything. I always leave our call feeling supported, less alone and justified in my annoyance with the universe. Love you ladies!! You are the best!
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Yes. Thanks y’all. So, so helpful.
I think Cat has her first AC treatment tomorrow? I’m sorry. Pleading chemo brain. Anyways. Wishing lots of luck and that it is smooth sailing for you. Don’t sweat the red pee (now see y’all, I should make the motivational tshirts) 🤣.
Nada here. Everything smells and tastes gross still. Except bread and caprese salad. And pasta. So there you go! Carbs coming right at ya. All of the healthy prepackaged snacks and protein powders for smoothies that I bought sound like the worst idea ever. It’s a super cold and rainy day here. It kinda looks like our summer is done.
NJ: I hope the dog’s appointment goes well tomorrow and that you have been able to prepare as much as possible. Did you find a spot for a hair cut?
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Hair is at 5:15pm.
Other food that's been palatable these past few weeks: Coffee, key lime and lemon flavored Greek yogurt, extra sharp cheddar on baguette, blt's on toast with mayo, fries with malt vinegar, knish with mustard and salt, scampi with lots of lemon and chicken frencese.
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Good morning ladies!
I spoke with the nurse navigator yesterday and explained how disconnected I feel from the process. I went from high contact hand holding in the drug trial process to head first into standard of care with little information about what standard of care looks like and who coordinates it. I did have some rough timelines out there because I kept asking about them but not a path that I was following. When do I see the surgeon again? When is my next MRI?
I've made some progress. I have an appointment scheduled with the surgeon on the 14th to get a mid-September MRI ordered and will have a follow up with her to review the MRI results about a week later,
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Hello all! I just packed my husband and daughter off to Vienna for a few days. My middle son is still here but I send him off on Saturday. Sniffle. Always sad when they head back to college. My dad is still in limbo. Now they think he is so far gone that the Memory ward isn’t the appropriate place. They are going to advise my mom today. It’s really insane because I feel like he was bad, but nothing like this, 2 weeks ago. He keeps jumping out of hospital beds, stripping naked, etc. They can’t seem to figure out medication helps either. But he is in the system now and they know they can’t release him to my mom so someone will figure out something. But, for the first time, I am worried that he might pass away before I finish treatment. It makes me so sad.
Anyways. Sorry. Sorry. I am thinking of you today NJ as I believe your pup has his amputation. I am sure all will go smoothly and I hope you are feeling well as I am guessing you will be his nurse.
And Cat, thinking of you today as I believe you start AC.
Tastebuds are a bit better today. NJ, I appreciated that list. Many of those things appeal to me as well. We had Nepalese for lunch, which was awesome.
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NJ: Yay for a surgeon and an MRI appointment. That gives you something to look forward to. That is so important.
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Sorry to hear about your father Bird. Perhaps the UTI is having an impact.
Feel like chatting? I can join teamspeak for a bit if you want some company.
I just got off the phone with the vet and it seems tomorrow is a consult, not the amputation. I'm so very confused. I got instructions for nothing by mouth etc. for him for tomorrow and now I'm told it's a precaution in case they need to do additional diagnostics during the consult. So no surgery tomorrow - timing would have been perfect and no idea when the surgery will be. Feeling a bit defeated.
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