Chemo starting November 2018
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Susan... having just had BMX on 4/2 and it's not as bad as we project it to be. My PS did a really good nerve block and I don't feel a thing!! (Well just a little pressure on my chest). My BS released me this morning and I just got home about 1245 pm.
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Nanette - Grateful everything went well and you don't feel a thing! Hope your road to recovery is just as good! You got out of the hospital quickly, good for you!! Hugs, Lisa
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I meet with the oncologist tomorrow because I needed one last visit to talk over all of my questions since we decided to end chemo over the phone and the MO was boarding a plane right as we were having that conversation so it was a brief discussion. I've come up with 2 pages of questions so far. Usually I work hard to not be the problem patient or not waste time with a bunch of silly questions but tomorrow I'm giving myself permission to ask every single question I've thought of over the last few days because it will probably be several months before I see the onc again and I don't want to wait and see if I can figure it out on my own.
I meet with my second opinion surgeon on Friday and my first opinion surgeon next Wednesday. Technically the 4 week mark since my last chemo will be 4/17 but there's no way I can get in to surgery that quickly since I don't even see my surgeon until the 10th. Life off of chemo is kinda frightening.
Nanette - good to hear your surgery went well!
Lisa - Good luck tomorrow! Praying for a quick and uncomplicated procedure.
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I can relate about the life off chemo feeling kinda frightening. I feel like I should be doing something like I've missed a lot of appointments, but no - I'm feeling some of my old energy back and I feel gradually a little smarter as the fog has lifted. Had blood work for the pre-OP last week and had sore throat and elevated WBC's. A week of antibiotics and I feel better.
Hope everyone is having a good day! MB1.
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My oncologist is moving across the country in June and will be handing me off to another oncologist. I legit cried when she told me. The things I've been through with her at my side have been so deeply personal and emotional, it's going to be strange to have someone new come in at the tail end of it.
We went over what will come next once surgery is over. She completely understood the fear and anxiety that comes with being cut free from the chemo safety net. My MRI results showed no evidence of the tumor seen pre-chemo. Even the other benign areas that were biopsied are smaller or non-existent. MO says we have to wait for pathology after surgery to really celebrate but she feels confident my results are going to be even better than we hoped for.
Today has been a combination of exciting and sad and scary and happy.
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Maddie, I hope you're feeling better. Hazel-Nut, I'm sorry you're losing your oncologist. That's got to be a hard thing to go through. What a trusted friend they are for us to have, I love my oncologist, he has done so much for me. We had a tea party at Mercy Cancer in Joplin yesterday, and I got to visit with some new people. It always helps me to talk to folks, you can learn so much. I'm waiting for my pathology results tomorrow from my surgery. The surgeon removed 2 lymph nodes and both were negative. I'm hopeful for good results. One more step complete. Sending everyone many hugs today, Lisa
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Lisa - Yay for negative nodes!
I met with my second opinion breast surgeon last week and I liked her so much I made her into my first choice. Now I'm deciding whether it's even worth it to keep my appointment with my other choice tomorrow or just cancel it and call it a day. Time is starting to run short... Everyone is in full agreement that 6 weeks is about the limit of how far they are willing to push it post chemo for surgery. Tomorrow will be my 3 week mark.
The surgeon's office was able to tentatively set me up with surgery for 4/23. There's a chance it could be pushed to the 30th but that isn't the end of the world. I'll be having a bilateral nipple sparing mastectomy with immediate DIEP flap reconstruction. I meet with PS on Friday to hammer out the recon details. Everyone at the BS office was so on board with this plan it really helped to eliminate a lot of lingering worries.
Almost 3 weeks PFC and still feeling the neuropathy. The joint pain is even worse than when I was actually on chemo and if that isn't some sort of cosmic kick in the pants I don't know what is. Overall though I'm starting to slowly feel a little bit like myself.
Hugs and healing vibes y'all
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Hazel-Nut, thank you. I'm waiting for a pathology phone call today, and trying to keep peace of mind. No matter what - it will all work out (note to myself, and calls from my husband confirming that thought). We are experts at waiting now, aren't we!
It is only my opinion, but if you like your BS so much, I'd just go down that road, my friend, just my thoughts. It is a wonderful feeling to have that trust in someone. I have that neuropathy too. My big toenail looks rather ugly. We were sitting outside last night enjoying the weather and I showed it to my husband. He suggested a very dark nail polish to cover it up, and I think I will try that! I hope our neuropathy gradually gets better, I have a difficult time with buttons and turning pages. My husband laughs and says, you're alive, aren't you - aww the reminder, yes. I do thank my chemotherapy drugs.
Just a note to anyone having lymph node mapping - I had the four shots in my nipple (and thought about that on the way to the nuclear medicine room at the hospital), and it wasn't that bad. Sometimes things sound worse than they are. Wishing each of you wonderful women a beautiful day! Keep us posted Hazel, thinking of you. Hope your kitty is enjoying the nice weather from a view of the window.
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Lisa - here’s a little laugh for you. She got a haircut! It was desperately needed but now she looks like a half plucked chicken. She’s so mad about it lol. she started getting upset when the groomer started on her neck and belly so it looks kinda choppy but the rest of it came out pretty good.
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oh dang it, she is so cute!!!! Cuteness overload!! My co-worker has a long-haired cat and gets her hair cut too. We have a long-haired cat that showed up a few months ago, I believe she/he is living in the "nature reserve" out back, the pile of tree limbs/leaves we don't burn, that is really pretty. He/she knows to come up to the backyard for food and water and we are working on saying hello without running away. This is just adorable - made my day!! Thank you for sharing! Kiss that little nose for me! She will be cool for the summer!
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So I met with the other breast surgeon yesterday and you know what? I just don't like him. And that has me really torn because everyone says he's the absolute best and I've heard a lot of good things about him but I think he's an honest to god jackass. I met with him before chemo and I told my husband at the time that I wasn't real keen on him and this appointment confirmed it. To add insult to injury he was an hour late to my appointment and then walked in the exam room, told me to take off my gown, said sure we can do the bilateral mastectomy, and then walked right back out saying a scheduler would call me in a few days. He was in the room for 9 minutes. And he keeps a little entourage with him wherever he goes of nurses and residents and fellows and never introduces them. Just a horde of people standing behind him staring at my breasts without so much as a howdy-doo.
I know I should want the best surgeon I can find and his general personality shouldn't be my top concern but if I'm going to have to see this guy over and over again for surgery and follow ups and what not for the foreseeable future I will go bananas. I don't need my surgeon to be my new BFF but I'd at least like someone who I can look at and not have my first thought be "what a jackass".
Just my little vent for the day. I loved my second opinion surgeon though, she has a phenomenal bedside manner. She may not be as well known a surgeon but she made me feel like a human being. I'm gonna stick with the second opinion.
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Hazel....I totally agree with you!!! You have to like the doctor! That is part of the total package. Personally, I feel if I need to have a good rapport with the doctor, as that's the building block of a relationship, trust and a successful treatment. Not everyone feels this way...and that's ok! But you did the right thing for yourself!!!!!! So is surgery on april 23?
MCatLady...How are you doing???
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Surgery went fine yesterday. I had the TE removed and a silcone round implant placed with some fat grafting to my collar bone area from my belly (I have some to spare), the breast surgeon took my left nipple and removed the medi-port (John). Should hear results back from pathology in 3-5 days. I am compression wrapped from my armpits to my groin. No showering for 3 days, no removing compression wrapping for 3 days. I can sponge bath if I want. Just thankful it's not hot as Hades. Home same day. Still a little groggy from everything. No real pain. Shoulder is most sore right now. I totally feel like a mummy.
I def would go with someone you're more comfortable with. This relationship is totally about trust.
That pic brightened my morning too, we had to do the whole body shave on my late SweetPea the last 6 most she was with us. She was also pouty about the haircut. Hope everyone is having a good Saturday. MB1
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maddie glad to hear all went well. Wishing yout a speedy recovery and clean path. report!!
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Maddie...you have a great attitude! Glad you are doing well!!!!!!!!
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Sorry I am a little late in responding. Maddie - how are you doing, did you get your results back? You are so courageous, you have my total admiration. I hope things are well.
Nanette - have you started radiation (am I remembering that right?) - I am sorry, sometimes I get confused. I hope you are doing well too!
Flower - How are you doing? Did radiation go alright for you - I sure hope so.
Hazel - Have you had your surgery yet, I'm thinking not quite yet. I hope you are doing well.
I've been reading about AIs and am trying to keep a positive attitude. All I need is to look to you ladies. I ordered a book called Uplift, breast cancer stories. Sending you each a hug, hope you are having a good week and wishing you a Happy Easter! We are going to my parents, where they have prepared my husband a list of things to do.
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Mussouri. No MO told me I'd be starting soon but it's more likely to happen in early May. I'm going to have Photon ionizing radiation.. I'm clueless lol Met my RO today and she's wonderful... full of personality 8) and incredibly bright for 38 ... yes I asked her how old she was lol
Maddie.... how's it going?? Any good news??
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Hi everyone, thanks for the well wishes. Yes news but I'm sort of ambivalent about it. Pathology came back, margins were clear but there was still cancer present in the tissue. I know chemo is supposed to kill that sh*t, maybe because of reduced blood flow from having the mastectomy chemo didn't kill that sh*t in my nipple part??? Make me really glad while I was on the fence for a while about radiation that I'm doing it anyway.... anyway, I will have some follow up questions for my oncologist at my appointment tomorrow. I will be getting shots of goerselin (Zoladex) and starting exemestane (Aromasin) pills. The goerselin shots are supposed to keep me in "menopause" so I can take the exemestane. They are going to do a hormone panel on me likely tomorrow as well but I can def say I haven't had a menstrual cycle since probably October just before the start of chemo.
My eyebrows have filled in, head hair is about a half an inch all over now (maybe a little longer) and seems to be stick straight. And I never realized how much hair I had on my arms until it started coming in. Wow. Just wow. I have a couple of large birth marks (little less than quarter sized) that typically sprouted really long hairs on my left arm, they haven't started coming in yet. (To be honest - those long hairs sorta creep me out, I didn't realize it bc I was so used to them, now with them not there, I hope they don't come back).
Bruising from the compression garments and procedures has my middrift and left boob looking like I've been thru some sort of crazy beating. This weird yellow and green with a little purple on the boob area looks like a 3 year old smeared finger painting with peas and carrots and plum baby food. Those dont bother me. I can't feel them. My sides and belly look like angry thunder clouds with some red streaks that look like lightening in a dust cloud and some carry around to my back. I'm convinced that maybe (just maybe) I was wrapped a bit too tight. We'll see what the plastic surgeon says on Monday. All over it reminds me of the shadows from the craters of the moon ... Kinda pretty, kinda gross at the same time. I continue to be amazed by how much my body has taken and bounced back from. The human body is amazing and frustrating and simply perfect whatever the shape.
I have just been on Tylenol since yesterday. Not much pain, just sore. And whew - the considerable difference with the change out from the tissue expander to the implant and how my left boob feels is amazing. I will repeat something I said earlier, I think they make the TEs deliberately uncomfortable so that the exchange to the implant feels so much better. I have no frozen shoulder and have (gently) about the same range of motion as I did prior to this most recent surgery. Again, I have more soreness in the right side with the removal of the medi-port.
Hope everyone is having a good Thursday! You all are in my thoughts and prayers. MB1
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Maddie you sound great!! Sorry there is still some residual cancer 😥 I'm glad you talked about the difference between temps and your new breasts. I've narrowed down my "iron bra" feeling to my expanders and omg they ARE uncomfortable! Now you have me looking forward to when my rounds of radiation are over and eventually getting these out and permanent ones in. I had been wondering if they would feel like this and I'd have to get used to it forever or if permanently ones would feel better. So glad to know I won't have the iron bra feeling forever.
Sending you warm hugs for all you've been through ((hugs))
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Nanette - I have no idea what Photon ionizing radiation is - I will read on that. I am glad you like your RO. I will meet mine in May.
Maddie - One thing my MO has told me, radiation will kill it. I was told if I had any residual disease left, radiation would kill it. I'm sorry to hear about that.
I had to see the surgeon for a followup appointment today. I got there early and ran down to make a payment to the cancer center lady, she is really nice, and they have a quota on collections, so I wanted her to get the credit for my payment. I ran into the nurse navigator - do you girls have one of those? Helps you coordinate things and is just there for overall support and understanding. She had some photographs of the tea party we attended. She is planning a fall pumpkin painting party and I told her I would ask the other two ladies that work at the same place I do if Sunday or Saturday is better to have that on. We talked about one of the girls that works here, who has had tissue expanders and infections and more surgeries and has had to miss a lot of work twice. I told this lady this morning how guilty I feel, having just had a lumpectomy and everything going well, when I think about what this woman has been through. This reminds me of you, Maddie, and any other woman who has had mastectomy or double mastectomy. And the nurse navigator understood, and I was just grateful she understood, and didn't look at me funny, like someone else did that I told that to, who hasn't had cancer. Hope that makes sense, and I don't sound crazy.
We had the dang tornado sirens go off last night at 1:15 am and I'm tired today, I had a hard time going back to sleep. I had been awake when they went off, the lightening was nonstop coming through the window and I was listening to that humming vibration wondering if it was a hard rain or hard wind. And thinking about the two stray cats that call my backyard home. This morning, they reported they had destruction just about 5 miles north of our house in Neck City, Missouri. One of my coworkers had texted me, her brother recently found out he has colon cancer and had a scan and they saw shadowing around his lung and he is set up for another scan. You know, going through a bad time really makes you grateful for the good things in your life. I think I took a lot of things for granted. Sorry for my rambling. Maddie, thinking of you. Thinking of all you girls and hoping things are going well. I am thankful for radiation - and please remind me of that in May, in case I forget. Lisa
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Lisa - I have surgery next week on Tuesday! I'm running around like a crazy lady trying to get everything ready at home and work for my convalescence.
MB1 - I feel certain that my body hair never grew this quickly pre-chemo. I have to shave my legs every dang day now! It's like it's trying to make up for lost time.
Nanette - Tissue expanders sound intense!
It seems like the end of chemo is just as crazy and hectic as the beginning. Appointments, scans, labs, pro-ops, more appointments, insurance hassles, yadayadayada. If I had known it would be this busy the week leading up to surgery I would have considered starting my medical leave early so I didn't have to balance so much between work and personal stuff.
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Hi Ladies!
Maddie...you have a great attitude!! Stay Strong!!!!
Nanette....glad you are not in too much pain....sounds like there is quite a bit of discomfort....feel better!!!
Hazel....I had to laugh! You are so right about our schedules being so hectic. I guess this will be our new crazy lifestyle!
MCatLady..I cant imagine how scary hearing tornado sirens in the middle of the night would be!
So I have 5 radiation treatments left (I am having my boosts now). I am tired and really need at least 9 hours of sleep, and a little sore, but this has been so much easier than chemo! I had a semi-melt down at my RO appt today. (This doctor is the most compassionate dr I ever met). I told him I am now very anxious that my treatments are coming to an end. I feel that as long as I am having treatments, I am actively trying to get rid of this f____ cancer! Once I am done..I basically have to sit and wait for follow up appts with BS, MO and RO in mid may and then start testing again. He said that 75% of patients feel this way toward the end of treatment and some people have a very hard time on their last day of treatment. The nurse added that this will be a new "new normal" in our lives. I do feel much better that I talked about this. By the way, I have been mentioning this to a few friends this week, and basically their responses were, be happy treatment is over or that is silly. They don't get it!!!!
Enjoy weekend!! Feel good everyone!
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I ran out this morning to go to radiation then I picked up a cup of coffee. As I was about to pay, the guy (about 40 yrs old) behind me said that it would make him happy to buy me my coffee. I thanked him and he explained that his mom is having a very hard battle with breast cancer, and he has so much respect for all the people fighting with her. There are some special people in this world!!!
Happy Holidays my friends!!!!!!
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That was really sweet! I have a similar story about kindness and it's sorta a little out there. It was in the very early stages of chemo therapy one of my first visits to the alternate location, before going up to the infusion floor, I was in the lobby restroom. I guess I had that deer in headlights kinda foggy look at the sink, this beautiful soul came to wash her hands and said she saw me and my mom walking in the parking lot and she had to come and talk to me. She said there was a light around me and that everything would be ok. She had breast cancer 11 years ago and had seen the same struggle in me. She said hair would come back, the fear the grips you can be released into the wind, the light would warm me and if I felt a hand on the small of my back not to worry - it was her and him guiding and supporting me. My mom was in the lobby still. I thanked her and left. I am not an overly religious person, I would say spiritual. I felt like some of the intense fear of this whole basket case called cancer lifted for a little bit that day.
I had my appt w the medical oncologists yesterday and surprise! She added Zometa too. I wish I still had my port in some ways. They drew blood for the hormone panel, did the infusion of Zometa (thankfully this will only be every 6 months) for 25 min along w some saline and gave me some Tums for calcium. Then did the shot of Zoladex in my belly. Wow - that one was a zinger! I know I'm still sore from the fat grafting and the onco nurse did the shot (ok they call it a shot, it's really an implanted device w slow release) in a different spot on my belly - but wow, that was a zinger. It reminded me a bit (just a bit) of the biopsy gun..... So, my left arm looks a little abused now, still healing from the IV they placed in my hand for the surgery on 4/12, the spot where they drew blood for the hormone panel and the the different spot where they did the infusion of Zometa.
I grabbed the pathology report on my way out and confirmed my theory about the blood flow and reducing the amount of chemo getting to my nipple. (Yay for logical scientific deduction! I'm sure my lab chief would be proud). I've driven the last 3 days just around town since I haven't needed the pain killer they prescribed. My husband is not pleased. He doesn't want me to lift more than a coffee cup, driving any distances or doing laundry chores. Much less scrubbing the bathtub, shower curtain liner etc. At the same time, he doesn't want me cooking lifting heavy pots pans etc so I feel like he's ordered just as much take out as when I was recovering from the mastectomy. He is a good capable cook. I don't really understand this. I meal planned and prepped things to cook and eat.... BTW - the Pinterest "wonderful no scrub bathtub wonder thing w 1cup each of Dawn and vinegar" - didn't work for my tub scum. I was disappointed. I've teleworked for 1-4 hours each morning since Tuesday. He's not going to be happy that I'm planning to do a half day next week on Thurs or Fri. I will of course clear it w my plastic surgeon on Monday. I lined up 2 more appts w radiation oncologist, one is a revisit my case appt since it's been 6 most or so since I had the initial one and the other is for mapping next week. All if the plastic surgeon says all clear for the go ahead.
We were under a tornado watch last night til midnight. The rain and wind certainly howled and beat against the glass. I can't imagine a tornado siren and how scary that would be.
I'm considering coming out about my diagnosis on FB but I'm really on the fence about it. It's been just over year now since I felt the lump and Thursday it was a year since I saw my primary care who started ordering diagnostic imaging. 4/25 was my first biopsy (I'm pretty sure of that date). What have been your experiences with Facebook and coming out about your diagnosis? I have a CaringBridge page but for pretty much family only.
Since I've been up now for 2 hrs w an antsy pup, I've been catching up some on the forums and pinteresting. Headed to mass w my mom on Sunday..... hope everyone has a good weekend - I'll be thinking of you all. MB1
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I'm so glad you girls are here. I hope we can keep talking, it means a lot to me.
Hazel - you will be in my thoughts on Tuesday. I know you will feel so much better once you get past this.
Flower - I have not met with radiation yet, could you please explain what a boost is? I keep reading that and I'm not sure what it is. I wonder if they will do the mapping at my first appointment (it is not until May 16th, 6 weeks after surgery). I've had a couple of my classmates tell me, via Facebook messages, this will make me tired. And Flower, thank you for talking about our appointments coming to an end. You are not alone in how you feel about that. Perhaps we will be that lovely person who bought your coffee, or the lady Maddie met in the restroom. I hope I can be that person. I get emotional reading your stories, and they bring tears to my eyes, so I don't know if I have the strength that you ladies do to be that person, but I am going to try. Once we get our hair back, maybe it will be harder to tell who we are, does that make sense? I've seen people use the word sisters, and I think that is a purrfect word to use.
Maddie - I had two people I went to high school with (Class of 1981), one I don't have as a friend on Facebook, send me notes of encouragement and tell me they've had breast cancer. Just a note to you, in case you let your Facebook friends know, you might find out people you didn't know have been through this. And both of them were years ago, and they are here and doing fine. I know not everyone needs the support of others, but I do, it is helpful to me to know what it is like for you, and what you do that has helped you. And your husband sounds a little like my husband. What would we do without this caring love they show to us? I wonder about people that have no husband, or no family, especially when people tell me, I've been praying for you. I try to remember them in prayer. Your comment about being spiritual - I like that. And your zinger - I'm sorry. I've seen folks in the infusion room get shots in their belly. The worst thing I've had is the shot in my lymph node when they were trying to attach the wire for surgery, and that was just a one time deal. Cancer is a terrible thing to get through, but I think everyone comes out of this a stronger person. You ladies have a good week, Hazel, kick some butt tomorrow, one more step will be done. You are all in my thoughts. Lisa
P.S. Hope your pup is doing better this morning and you can sneak in a nap.
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Hazel-Nut sending you warm thoughts for your surgery tomorrow... praying for a good report and a speedy recovery ((hugs)) I was really surprised at the nerve block... it was amazing and as it wore off over a few days I didn't have much pain because everything is so numb from the nerves being cut. Like others have said before out imaginings are actually worse than it really is.
My only discomfort now is the temp implants. They feel so big. Now that most of the swelling is down to almost nothing I've determined it is the SIZE of them that is causing distress. The worst is in my armpit area near the front they rub on that tendon. I read on the card they gave me about the implants and they are 850 cc!! OMG I was hoping for slightly smaller breasts when all was said and done. I was a 36C most of my life and I'm trying to slowly lose weight to get back down to what I was 5-6 years ago.
Anyhow I've got my PET scan today and my Echo. Nervous about the PET though. From what I've read its 1 hour from injection to the time they start the PET but also my Echo is scheduled for 1 hour after my injection time I'm a different part of the hospital. So I'm not sure how that's going to work out at all.
This is Day 4 of my Kadcyla (still not sure how its pronounced) nausea is not as bad as Taxol and tiredness is setting in so I've been napping the past day or so
I can't wait to get these drains out!! I can sleep better lately though on my side. But I dont think my body likes that though as my drains are still between 15-25 in the mornings 😥 I return to PS next week on the 2nd and I'm praying he takes these things out!!
Today is my 1st day home with out DH as he returned to work this morning. Don't worry I'll behave and not do anything I know I shouldn't lol
So sorry for rambling on here...
Here's to hoping you all have a great day!!
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MB1 - My oncologist told me not to let them remove my port during surgery because we won't know for sure that everything is ok until final pathology comes back. I definitly don't want to have them placing IV's if I end up needing more infusions! I was planning to speak with her about the zometa infusions as well. I've read a lot of studies about using it adjuvantly to prevent bone mets. I think I'd do just about anything it took right now to keep it from spreading.
Met with the plastic surgeon today to get marked up for sugery tomorrow. Under my blouse I look ridiculous, I'm covered in purple sharpie. My husband is going to laugh his head off later when he sees me. Surgery starts bright and early tomorrow and they say I should be ready to discharge home on Friday. I'm nervous because I don't know what the ultimate outcome will be but I'm so ready to be officially cancer free!
In other news we just signed a contract on a house and close on May 20! I have no idea what we're thinking doing all of this while I'm recuperating from major surgery. It's going to be so crazy. It's a really beautiful house though, it will be worth the added stress in the end I think.
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Oh, that kitty photo, Hazel, oh kitty cuteness! Sending you lots of good thoughts and a quick day tomorrow.
Nanette, I hope you get those drains out soon. You ladies rock!
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Hazel-Nut good luck!! They give so many meds that I only remember kissing DH goodbye and then him kissing me in my room. Expect brain fog there are things that are hazy for the 1st 24 hours and I heard that i tell jokes coming out of anesthesia lol
I do remember my 1st meal after surgery about 10 PM was 2 little cups of chocolate pudding and 1 cup of orange jello
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Just a quick "hello"!
Hazel..good luck tomorrow and how exciting about your upcoming move!!!
Nanette...how did your testing go today? I find, for me, many times the anticipation is worse than the actual test/procedure.
MCatLady...about radiation...(I can only go by my experience) the first appt was mapping/simulation which is basically the set up for positioning for treatment. My RO does use tatoos for markings, some use stickers. My positioning was lying face down (prone). Most treatments are approximately 4 weeks or 6 weeks (33 treatments). Most of the treatment is radiation of the full breast, and the boosts aim directly to the tumor site (scar). Treatments are very fast and painless.
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