Lumpectomy Lounge....let's talk!
Comments
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Missbee....beautiful profile pic and welcome to the lounge! Sorry I can't weigh in on your situation but just wanted to welcome you
Maggiecat....the calm after the storm..glad things are settling down and congrats on good follow ups!
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got results of first mammogram since surgery and chemo, and everything came back fine. So next test end of January. Thankful I get to enjoy the holidays with only Herceptin
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MissBee, WELCOME! If you've read any of the posts here you know that we're caring, helpful and a tad "off." You'll like us! I can't answer your questions but I'm sure some of the ladies will be able to. You definitely need to be part of our "Think pink. Let's Drink" party.
MaggieCat, glad everything is good! And that the weather is under control.
ItalyChick, great results!
I had my 14 month follow up with the BS Tuesday and everything looks good. I'm to get a 3D mammogram in April since I have dense breasts. Have my 1 year follow up with the RO at the end of the month. Don't see the MO again until February.
HUGS!!!
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yay that all of your followups went well also, ItalyChick, MaggieCat and Peggy! and welcome to MissBee!
Octogirl
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Oh, my goodness. Go to work for a day and two pages goes by! Glad to see some new faces (new to me, anyway) Italychick & Miss Bee.
Rina, I am just MAD when I hear that you had to have ANOTHER biopsy. Why can't they get this stuff right the first time?!!
Aggravated...I need wine...
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Today I took my "cranial prosthesis" prescription and went to my wig fitting. Ugh. Not nearly as much fun as it sounds. The "salon" I went to is working out of a very small--VERY small--room in a clinic while their real salon is being renovated. So, it was already a bit claustrophobic in there. The technician was very good, and a wig-wearer herself due to alopecia. But still....it's wigs and scarves. I tried on several styles and most of them looked like I was wearing Paula Deen's hair. Fooo! My hair is about 75% brown/25% silver, fine, soft, and fluffy. It is soooo hard to match it with wig hair! Nothing looked natural. She even tried a few hats and scarves, but nothing felt right. I finally just got so upset that I had to walk away. The tech was understanding and even gave me the number of another wig shop that might be able to help me more. When I got home, I was pretty upset. I didn't want to talk about wigs anymore, but my DH really wanted to push it. I'm leaving town tomorrow for a week, so I really need to get this ball rolling. So, I gave in and had DH drive me over there.
Well, this couldn't have been more different. First, it was brightly lit and there were a LOT of normal-looking hair wigs. The shop owner was a real Southern Belle named Tommie and she pegged me when I walked in. She found a wig that was cut similarly, so it was a matter of matching the color. Ugh. Here we go again! But then a funny thing happened--the wig she had me try on was mid-length in a sort of a strawberry blonde . I thought I wanted to match my natural hair color, but the strawberry blonde actually looked better! I tried a few other blonde styles, just to make sure. Still, I was not convinced--I don't want to go to church and have my hair color announce WIG!
So DH came up with an idea--dye my hair to match the new wig! Stopped by Target on the way home for $8 worth of L'Oreal Dark Blonde. An hour later, I am a warm golden blonde-brown. And it's getting lighter by the hour, LOL.
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MLP....what a great idea to color your own hair first....transition will not be as abrupt and sounds like you really like the new color.
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Poodles, give hubby an extra hug or million. What a great solution to your challenge! He's a keeper. I'm glad you found a wig that you like, looks good and makes sure you don't resemble Paula Deen
I'm a L'Oreal gal myself - 9G - of many years standing. Why would I want to be other than blonde? I've absolutely no clue what my real hair color is and don't intend to find out!. HUGS!!!
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Hooray for all the good news Italychick, Maggiecat and Peggy! MLP, great news about the wig and your DH is a keeper!
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MLP I love your idea. I keep wanting to go more red. I used to have a lot of red in my hair but it has all gone white. But when they try to get highlights to put is back it is either stripy, doesn't last or is obviously fake.
Keep your fingers cross for my assistant tomorrow. She is having a biopsy. She was found to have BRCA1 earlier this summer, right before my DX. She had prophylactic hysterectomy in August. Is now planning prophylactic MX in January. Went for her baseline MRI and they saw something they wanted to watch. But she's too nervous to wait, thus is having it biopsied immediately. I reassured her that they are pretty good at looking at something and knowing if it is really something to be worried about. (For me right both times.) But that didn't help. And honestly I'm not sure even a negative biopsy will calm her. Her mom has BC,had an MX years ago. Recently found something in the remaining tissue, it was biopsied as benign but turned out to be malignant. (Ironically inherited BRCA from Dad's side tho)
I was PT today for eval. She said she could still see swelling in my chest and showed me the anti-lymphodema messages to do. She'll give me more next time I see her. She did some message which got me 20 more degrees range on my arm, so that was awesome, but I assume it will take more work that than to get full range of motion back.
Day was long. PT, work, Cub Scouts. No dinner until 10PM. Now I need sleep!
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Yeah, I have to give credit to my DH. He really is a good man. He has driven me to all my doctor appointments and took care of me when I felt so horrible when my breast got infected. DH is not naturally interested in medical things, but he has risen to the occasion. I say we are a matched set--he has stage 4 heart/lung disease and I have luminal B breast cancer.
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Outrunning, I suspect that you're right - nothing is going to reassure your assistant. She's understandably paranoid. Just support her! Hope you managed a glass of vino with dinner - late or not!
Poodles, it had slipped my mind about your DH having medical problems, too. That has to be difficult for you both to be fighting crap. Good for him, though, being such good help to you. Doesn't always happen that way.
HUGS!!
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LOL, Peggy, we take turns. Last year he was so sick with heart valve disease that he very nearly died. Got a new valve and by some miracle lived to tell the tale! This year I guess it's my turn. At least I'm not in danger of dying from this any time soon.
Time for bed and my hair stinks...
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But it's BLONDE!!
HUGS!
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April - Thanks for dropping in. Come join the party anytime!
Keys-Plez - Thanks for the info; it is a help to know. Thinking positive thoughts for you at your meeting with MO.
Outrunning - Thanks for the hugs. Your life sounds extremely busy right now!! I hope you manage to eat well and get the rest you need as you are still recovering. Keeping your assistant in my thoughts and well-wishes for her staying out of this exclusive club! (although, if we have to be here, this is a great group of gals to be with!)
MissBee - Welcome! You look beautiful! So sorry that you have had to endure the chemo and it has not helped. I can well understand your stress and dilemma over what type of surgery would be best, and glad that you are looking at it in terms of overall recovery and prognosis as well as aesthetics. I have no experience to offer, but sending positive thoughts and hugs as you face this decision.
MaggieCat, ItalyChick and Peggy - So glad that you are past the first followups and with encouraging news!! Woo hoo!
MLP - Thanks for your empathy. I am so glad that your DH pushed you to go to the second wig shop and that you were not left with such dissapointment! Your DH had a great idea!! You are very fortunate to have each other and you make a good team. Enjoy being a blonde!
HUGS!!! (oooo, very gently today...)
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i had my lumpectomy and sentinel lymph op yesterday but feel relatively well
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KeepWalking, hope you are mostly comfortable today. Do you work or are you able to stay home and take care of yourself?
HUGS!
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Marion55, so glad that that's over and that you are doing pretty darned good. Remember to take it easy. Use ice regularly. Take medication for pain - whether super-duper painkillers or Tylenol. Keep yourself comfortable.
You might also consider making sure your profile is up-to-date and then make it public. If you ask questions then people who have followed a similar treatment path can answer them.
HUGS!!
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Peggy - Thanks for asking. I am sore today, but not too bad. I think the local anesthetic gives me a migraine, though. It happened last time and also today.
I usually teach at the college level part-time and it is a stressful position due to program constraints. But with the diagnosis and the uncertainty of what the BC treatments would bring, I decided to let them find a replacement for this semester. So I am free to take care of myself and my DH, who is doing a treatment plan for a serious illness. He pretty much forced me to make that decision and I am so glad he did!
Marion55 - Welcome, and glad you are doing okay after your surgery.
HUGS!
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KeepWalking, with as many biopsies and tests that you've had, a migraine seems quite logical. Hopefully it is gone today. I am very glad you are taking this semester off. It's hard enough to take care of yourself during BC treatment let alone DH. I totally get that since I had been the sole caregiver of my DH for 4 years prior to my Dx. It is very very hard. What do you teach?
HUGS!
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Welcome Marion. As Peggy said use ice liberally and stay on top of the pain.
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Peggy - I am a biochemist and I teach chemistry here (in English). I certainly can't claim that my care for DH is anything like you were doing. The liver disease and the medication affect his cognitive skills (but he is not fully aware of it). So, I need to keep watch over what medications he takes and when, and try to intervene in the bureaucracy and paperwork in order to make logical explanations of what is needed, why and when, without seeming like I am taking over. And to remind him of what needs to be done and why. But the explanations usually don't stick and we are back to square one. So, I am hoping that I will still be able to do all of that. He had waited many years for this treatment, and when he just was finally about to begin the regimin, I was diagnosed with BC. I wondered how this would go with us both in treatment at the same time, but I didn't have the heart to suggest that he delay.
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Rina, cognitive problems are so hard to cope with. DH had those and he KNEW it. It really worried him. He was happy to let me take over everything. He didn't want to do it. I gather your husband still wants to be in control. It has to be hard to wait years for needed treatment. I can see why you wouldn't want to delay his even as you cope with yours. Very challenging. Wow - chemistry. Not my strongest subject. I can't remember, have you moved to Israel permanently or on a rather temporary basis? Coping with a language barrier is hard enough for everyday living but with medical issues that has to be really difficult.
HUGS!
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Peggy - I have moved here permanently 4 years ago and still trying to learn the language. Luckily, I was able to get into a government funded course in medical Hebrew 2 summers ago. It is actually for people going into the medical fields, but also for biomedically related fields. I didn't think I would really work here in medical fields in Hebrew, but the terminology is definitely coming in handy now. Many people here do speak English, but many don't. The nurse coordinating my DH's care does not, so each email to her takes me a long time.
I am sure I would get more information about my situation if I was fluent in Hebrew, but I am not. I do okay, but when I am stressed, or my emotions get involved, all my Hebrew speaking flies out the window. My surgeon is Israeli, and very highly regarded here, and although he apologizes for his English it is really great. So, I feel that when I meet with him again I will get all my questions answered.
My nurse coordinator is a British native, so I call her when I really don't understand, but for many things she doesn't have the answer and refers me to the surgeon's secretary, who is great and kind, and speaks a little English, but we mostly converse in Hebrew. My MO is a U.S. native, so that should work well when I get to that point.
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It is so hard to care for others when we need to care for ourselves...had a taste of it last night myself. My father is 91 with dementia and heart problems, can't care for himself at all, and is in assisted living. Honestly, objectively the placement is fabulous, but sometimes he lashes out at being there. My stepmom (his wife of 30 plus years) lives nearby, she really could not care for him alone any longer. But of course she still wants to be with him as much as possible.
Sooo...yesterday she took him out to get a hair cut and lunch. A nice outing until it was time to go back to the home he is in: he refused to get out of the car in the parking lot, said he hated the place and refused to be there, and that he's rather die than live there. You can imagine how she felt about that. Eventually, as dinner and dusk approached and she plus staff from the home were unsuccessful in reasoning with him, they tried to pick him up and carry him...at which point he started getting physically violent and threw a punch or three (his legs may be weak but apparently he still has a right hook). At that point they called 911. Local deputies came, convinced him it was time to be home, and he went in (and ate dinner, watched baseball and went to bed), but not before telling the deputy that he'd be happier if the deputy just shot him.
and now, my stepmom (who was texting me throughout this ordeal) is doubting her decision that she can't care for him, though she has the full support of all of his children that this placement is the best option, she thinks he'd be happier at home. He has docs and psychiatrists looking at his meds, but the truth is, he just doesn't have quality of life any more and is unhappy. And having him at home with stepmom would not work unless she had full time care (among other things, when he was at home he wandered at night, and had a number of serious falls. Ended up in the hospital after the last one. Stepmom never slept through the night, barely slept at all), but her home is too small for full time care. The care givers (you'd need shifts) would be sleeping on the couch. and stepmom would still be exhausted. Nor is she be ok with him living elsewhere (say, with one of the kids with full time care). They are in a semi-rural area that has been her home since childhood, several hours drive from me, and she wants to be near him and wants to stay home.
So, thanks for letting me vent. I can't imagine how you did it Peggy. It is just SO hard, so exhausting, and there really aren't any great choices.
It is so helpful to be able to talk about this knowing that one of Peggy's famous HUGS is coming my way!!! :-)
Octogirl
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Rina, you must be very thankful for that medical Hebrew course. Keep trying. My best friend moved from Cardiff, Wales, UK, to Portugal 11 years ago and she often still carries an English-Portuguese dictionary with her though her Portuguese is very good.
Octogirl, please don't let your step-mother take your father back home. That is not going to work. She will merely kill herself and your father will keep on going and need to be placed again. He is not in a position to make such decisions. Tell him any lie necessary to keep him there. When DH wanted to go home I'd tell him that I couldn't care for him anymore, that he had to stay that night or whatever seemed to work. Since his short-term memory was shaky at best he wouldn't remember the next day.
I also recommend that your step-mother no longer take him out of the home. Surely he can get haircuts there. And she can bring him lunch from McDonald's or wherever. It is easier to cope if you don't put the patient in a situation where he seemingly has a choice (which, of course, he doesn't).
It is beyond exhausting caring for someone, especially when you don't get sleep. DH would get me up 4, 5 and 6 times a night to go to the bathroom. He couldn't get out of bed, walk to the bathroom, toilet, walk back to bed (mind you we're talking 8 feet) and get back into bed without help. And it is extremely depressing. Make sure your step-mother is told repeatedly that she is doing the right thing by keeping your father in the home and that you support this. She feels guilty - understandable, but wrong. Make sure she gets anti-depressants if needed. But again, don't let her take him home!
HUGS!
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Octogirl - Wow, what a heartbreaking situation! It must be terribly hard for you, as I am sure you can sympathize with both your father and his emotions and conflicting needs, and also your step-mother and her needs. She must feel like there is no answer and whatever she does will be wrong in some way - You must feel the same. Life is not easy. And choices are so difficult. Perhaps outside outings are too stressful for him. I have no answers, but I can sympathize, and empathize, and give big HUGS (gentle). You are understood, and not alone! Please vent anytime it is helpful, and we are here.
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Peggy, I totally agree with your assessment. All of us kids let her know last night, NOT for the first time, and I will call her again today to say that she shouldn't be taking him on outings, at least not alone, and yes, of course they can cut his hair. The docs will even visit there. She just feels like she wants to take him out. She is having trouble accepting her own limitations. She is a lot younger than he is (in her 70s) but she is still getting older, of course, as we all are, and has medical issues of her own. She feels guilty for living her life. Indeed, we had told her already that we didn't think she should be taking him out alone, because he would start ranting about hating the place (though as far as I know, he hasn't resisted physically before last night). Problem is, she does feel guilty and doesn't always listen well to advice. All I can do is support her and be strong for her, I guess, but of course I am caught up in my own issues, especially right now with chemo. Hard to get up there and visit. going to do so soon, but it won't be for a few weeks yet. :-(
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Thanks Rina! We all will get through these struggles together..
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Octogirl, please share my story with her. I totally understand the guilt she is feeling. I felt that way, too, when I had to put DH in the nursing home last November. I felt guilty that I was living MY life for the first time in 4 years. And I felt guilty because I was enjoying not having the exhausting responsibility of caring for him. The most interesting reaction to my situation was from my brother's wife. She said she and my brother would totally understand if I were to start dating. That wasn't going to happen but it acknowledged that DH was not coming home. It took me 9 months to finally get my gut to realize that I had been holding out hope some really huge miracle was going to happen and that he would get well and come home. Needless to say I knew that wasn't going to happen and once that lightning bolt hit me, I was able to move on. I started making the house "mine", not ours. DH was not going to see it again. All of this is hard to process.
I had thought of taking him out for lunch but it seemed far to difficult for me alone to do, so I didn't. He wasn't very mobile. We enjoyed the McDonald's I picked up regularly. And that eliminated the problem your step-mother faced.
Please tell her that, while what she is feeling is normal, don't let it cloud her judgment. She cannot care for him at home even with 24/7 help (which would cost a huge fortune). She needs to care for herself. Nothing she does is going to help your father get well. She needs to accept this in her gut, too. It's hard but necessary. Be as blunt as needed. The dementia is not going to get better, nor is his heart.
As you can tell, I feel very strongly about this. Once you have travelled this path you gain knowledge (not sure about the wisdom part tho'
). Good luck. Hopefully, she will listen. I can imagine how heavy this burden is with you now going through chemo. You have to take care of you, too! Let your siblings handle as much of this as possible.HUGS!!
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