Starting Chemo in Nov. 2011...anyone else?
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I'm so happy for you bahamamom, that all is well with your mammogram. Hoping this will continue for you.
I'm feeling so much better, but evidently was doing too much. Developed a soroma in right mastectomy site and had to go in yesterday to have it drained. I was told I'm using my right arm too much and have to wear compression bandage again for a few days. So I'm back to resting. I get so bored and now that I'm feeling better it's hard to remember to not do anything. I don't know how to stop using my arm. Trying to do more with left arm.
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Grandma ~ Oh my...I am so sorry that I have been away for so long and have missed all that has been posted in the past months. My DH has been home on disability (bad knee replacement), so life has been very different for me. We have always worked opposite schedules and then when I retired, i had my own schedule going. With DH being home, my routine has definitely changed and it's actually been nice to have time to spend together after 44 years of marriage! If there's any good news, it's definitely that you won't have to do chemo again. It sounds like the double mastectomy was your best choice...if there is such a thing in that situation. I hope that you have been able to rest and been kind to that right arm! I can only imagine how hard that must be. I remember having limited use of my right arm after surgery and it was really hard to make myself baby it. Take care of yourself and let your husband wait on you!
Quaatsi ~ I hope that you are feeling better and that you will find peace with whatever decision you make. I, too, am hoping that you will decide to continue and have some pain free days and some joy in your life. You certainly have shown how strong you are with the situations you have dealt with for so many years.
Nel ~ So happy to read that you were going to take a trip with your daughter to Spain. I hope it was a wonderful time and that you and your daughter enjoyed some special time together.
Bahamamom ~ Glad that your mammogram results were good. i had my mammogram in July and it was OK. My MO did mention that I had been on the anastrazole for 5 years and that staying on it will give me a few percentage points against recurrence. I am going to keep taking it for now, because I am afraid to stop even if it only helps a little. I guess I am a bit superstitious about not doing any active treatment for the BEAST!
I hope you are all enjoying the fall weather. I will check back soon to see if anyone has visited our thread. Take care all!
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update: Had my 4th draining of seroma on Thursday. They only got 15cc out, so I'm hoping that's the last time. Still told to limit use of arm and wear compression bandage until skin has sealed to tissue underneath. I think it has done that, but I'm going to continue to use compression for a few more days to make sure.
It's good to hear from you Linda, so glad your mammos were normal.
Quaatsi, I hope you're finding some good days.
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Wow, Grandma, I hope after 4 times that you are finally done with that! I also hope that they have the drainage under control because I think it could possibly develop into lymphedema. That is no fun. I will be thinking of all of you, my BC sisters, as we enter into this Thanksgiving time of year. I am thankful for all of you and the friendship we share. God bless you all.
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Bahamamom - you're right, it can develop into lymphedema. I don't think it has. I appreciate you all too.
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Hi All,
Happy Holidays, whatever we each celebrate! I have finally moved to Cape Cod, semi retired and adjusting to my new life So far so good - we will see how January and February go. It is nice to go at a different pace, not sure how I worked and got everything done. Frequent naps in the afternoon, seeing more of friends all is good.
Grandma - hope things are improving
I think 6 years we have been in touch WOW, some of it seems like yesterday and some eons ago
Be well
Nel
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Hi everyone, Thanks Nel, I am improving. Almost healed enough now to be fitted for my prosthesis. I gained 10 pounds back after all the inactivity, and am having to build my exercise back up slowly. I have nearly full range of motion. I still have to be careful when standing and reaching, skin is so tight it feels as if it could tear. Been walking everyday for a week now, for 30 minutes. Yesterday I was able to go a little farther in the 30 minutes, about 1/2 mile. (1/4 mile out and 1/4 back). I'm hoping to increase that to a mile this week. My knees are really giving me trouble. Probably the femara, age and the extra 10 pounds. I haven't went back to work, yet. I'll have to wait til I build my stamina. My goal is Dec. 11th. The lady filling in for me has been wonderful. I care for an elderly woman (94). I have to push myself, because I'm just so fatigued. I think about all of you often. I hope you're finding some joy in everyday.
Editing to add: I don't know if I mentioned my onco. ordered genetic testing for BRCA1 and BRCA2. I haven't heard anything back, yet. He and my BS both suspect my cancer is hereditary, since a new primary started while still on femara. If so, I may be in for more surgery to remove ovaries.
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Grandma V ~ Glad that you are finally starting to feel well enough to exercise. You have been through a lot in the past few months and I hope that you aren't going to have to have your ovaries removed. On the other hand, if that is necessary due to the BRCA issue(s), at least you will have a definite reason why you developed cancer in the first place. It's not much, but it's something I wish all of us could have. It'ialways something I wonder about...did I do something, eat something, breath something that caused me to have cancer. I guess in the big picture I just have to be glad I had regular mammograms so I was diagnosed and was able to have treatment that was available to me. I continually fight the weight battle, so I know that is very frustrating at times. I think you are doing great for having to go through treatments a second time.
To all of you, I wish you a happy 2018, filled with better health and much happiness!
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Merry Christmas to all of you. I hope you are all feeling good and enjoying any celebrations you may be part of this holiday season. Grandma, I think you are doing very well with your exercise, and the weight will come back off as dedicated as you are to your goals. Linda, I know you work hard to keep your weight down as well. I am back up to the weight I was after chemo was over and pretty upset about it. But I am just starting a new diet with increased exercise sessions since Christmas is over. I have been babysitting for one of my daughters for the last several months so that her youngest baby didn't have to start daycare until she was a little older. It is a blessing to be able to do that, I know, and I wouldn't trade it for anything, but at the same time, it is difficult to keep up with my exercise when I do. Besides that, I wind up snacking around all day when I have nothing to do but watch her. On a brighter note, we have an answered prayer. Our youngest daughter (after 2 years of trying) just gave birth a few weeks early to a healthy baby boy. They are so happy, and of course, I want her to experience all the joys of mothering that she wants as well. Nel, I agree with what you said about not sure how you ever had time to go to work. I feel the same way. If I really think about it, I realize that I used to do tons of things (shopping, errands, laundry, cleaning, etc.) after work every day, where now I just pretty much watch TV with my husband every evening. I do really love being retired, though, even if I am babysitting for my grandchildren. At least that is my choice, not my job. Grandma, let us know what the genetic test shows. I asked my doctor about testing for that because I have 3 daughters and wanted to know if they had increased chances of getting BC, but she just pretty much blew it off since I have 4 sisters all older than me and none of them had it.
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Thanks Linda and Bahamamom. I'm still healing after 3 months. The cording is much better, but I still have so much fatigue and no stamina. It's been too cold to walk, so I'm sliding back again. I'm dealing with a depression like I have never had before. I don't want to do anything but eat. I started back to work and that helps, but I just drag myself around all day. It doesn't help that another friend just died after only being stage IV a few months. It had spread to her stomach. Can't wait for spring. Still haven't heard anything about the genetic test.
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I think I know how you feel Grandma. I just cannot get out of this depression and each time I think I am climbing out, I fall back in. I don't have any words of wisdom except don't give up. Q
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Thanks Q, I won't give up if you don't give up.
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None of us can give up We all hold each other in our pockets every day - we are not alone.
Beginning my first full winter on Cape Cod, finding new interests and connections. But in the dark cold evenings - it can get lonely and a bit depressing I am figuring it out It is all OK most days
For 2018 I wish for us to all remain relatively well little or no pain, good times with friends, effective meds with limited SE and much laughter.
Significant weather on the Cape yesterday, my dd , 19 was with me. Enjoyed the day, making sure she knows what she needs for future storms/cold weather: keep you gas tank filled, keep cabinet doors open if pipes are on an outside wall, black ice.etc. All the things my parents conveyed to me Hope I have time to remember and share all
Nel
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Hello to all of my fellow warriors. I read your posts and think of how all of you are determined and strong in the face of the things we have all faced in the past 6+ years we have continued our journey and stayed in touch, even if only on a semi-regular basis...lol! It is good that we have things to keep us busy and productive, although on many days I am as lazy as lazy can be!
Grandma ~ i am sorry that you are dealing with depression, it's something that I have experienced and it takes a lot to fight it. I have suffered from anxiety and panic attacks in the past, and I know how it feels to just want to sit and eat because it is just easier to do that when you feel depressed. I am so sorry to hear that your friend passed away. It's hard to get over a loss like that, so be patient with yourself and hopefully there will be an early spring this year and that will help to lessen your sad feelings. I hope you have the info on your genetic by now and I hope it was the result you hoped for.
Bahamamom ~ I know what you mean about retirement. I remember running so many errands on my lunch hour, especially when my MIL was still alive and very needy. You do what you have to when you know you have to work. I love being retired, although sometimes when I don't have anything on my calendar for the day, I do feel guilty just vegging out and reading, or watching TV. But then, I try to tell myself that I certainly put in my time (always worked because we did not have kids), and try to enjoy the wonderful freedom that comes with retirement. I was just talking with my best friend and she said she told her kids that even though they are busy and stressed out with life, it is the best times of their lives. But then she said as she was sitting in her favorite chair, drinking tea with her dog on her lap, retirement is pretty sweet and well-earned, but she's not going to tell her kids she has rethought what she told them!
Quaatsi ~ I hope you permanently climb out of your depression and stay there forever. I agree, we all need to hang in there for the long haul!
Nel ~ It sounds like winter on Cape Cod isn't your favorite season. Even in Southern California the nights can be long and depressing at times. I love spring and can hardly wait to see things growing and coming to life. I would love to go to Cape Cod for spring, or maybe fall would be best since I'm sure the change of seasons and fall colors are amazing!
Take care everyone and be nice to yourselves. We deserve to be happy and healthy and that is my wish for all of us!
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Where is everyone? I'm lonely! Hoping someone stops by soon!
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I'm here How are you Linny?? Survived my first winter on the Cape. Volunteering for a non profit start up, just finished 12 weeks of Livestrong at the Y and have begun taking African Drumming lessons. My oncologist of 6 years is leaving, I'm sad, but will adjust We have gotten along so well
How is everyone else??
Nel
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Hi, everyone, and happy Easter to all. I am doing well, spending a lot of time with family. We are going to NC to see most of my brothers and sisters next week. I’m looking forward to that. I haven’t seen them in about 9 months, and as we age, that is getting to be a long time. I have finally lost 10 pounds, and I am very happy about that. Lots more to go, but it is the biggest turnaround I have had in a couple of years. Still no sign of BC returning. I continue to take the anestrozole, and my fingers are getting pretty sore and stiff. My middle fingers are getting to be trigger fingers like my thumbs were the first year I took it. They are painful but not nearly as much of a problem as my thumbs were when they were bothering me. I had a bone dexa scan recently and it showed mild osteopenia in both my lower back and hip. I haven’t been to see dr but doubt that she will think it’s much of a pro a problem
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Hi Ladies! I'm so happy to hear from both of you.
Nel ~ Glad to hear that you survived the winder on the Cape. I bet that summers there make up for the winters! Sounds like you are keeping busy in a good way. I have to admit that I have never seen any info on an African drumming in San Diego, but it sounds like fun. I would be able to take out any aggression I would have on the poor drum! My original oncologist moved to Los Angeles about a year and a half ago. While I like the one I have now (a younger woman), for some reason I felt more confident with the first one. I think that has to do with the fact that he was the one who saw me through the journey from diagnosis, surgery, and after treatment. I also feel that he was more cautious than many, and I found comfort in his knowledge and concern. My big issue at this time is with the anastrazole. I have been taking it for 5 1/2 years and my current onc says that she thinks it's long enough. I have maintained my bone density, but she says she worries about fractures if I take it longer. I have been doing some amateur research and I have been reading that 7 years is better than 5, and that 10 years may not be necessary. My original onc said I would probably be taking it for 10 years. My current onc said that if I were her mother, she would recommend I stop, but wouldn't force me to go off of the drug. I have definite anxiety about stopping any active treatment. I read about the BCI test and will ask her if she can order it. However, I am in an HMO (Kaiser), so I'm not sure it's even available. Sorry to be so long winded, but I just had to tell all of this to people who understand how difficult this journey is even 6 1/2 years later!
Bahamamom ~ I am so happy to hear that you are going to see your family, but even happier to hear that your BC is at bay! I often wonder how it will actually feel when I do stop taking anastrazole because I am not sure, at this point, whether my aches and pains are from the drug, or just old age! You are so right about 9 months of not seeing our family members and friends is a long time. My Mom's side of the family (which is the only one I care about...but that's another long story) are having another family reunion in July. There are only a couple of people left from my Mom's generation still living, so I would like to go, but just not sure if I can work it out. Guess I should be checking out air fare to Chicago pretty soon if my brother and I decide to go! I just can't believe how quickly the time passes since I have retired. How can I possibly be on Medicare so soon? Yikes!
Happy Easter to all who celebrate the holiday. We will be with our family on Sunday, and really look forward to seeing all of the little ones have their egg hunt. I guess I better get their little gifts ready soon or I will have to go with all of the stuff in one big bag and have them sort it out...lol!
I wish you all happy days and great health as we enjoy this spring season! ((Hugs)) to all! Linda
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Hello Out There! I hope you are all doing well. Hoping someone will check in soon!
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Hi, It’s good to hear from you Linda. I’ve been so busy. My youngest daughter just moved out after living with us for a month in between selling her old house and getting into a new one. It was her, her husband and baby and 2 dogs. Needless to say we’ve been vacuuming, scrubbing, laundering, and febreezing everything this week to get our house back to normal. My latest visit with oncologist she put me on a generic Boniva. It’s the tablet form once a month. I put off taking it til yesterday cause I have heard there are lots of bad side effects and I didn’t want to be feeling bad while I had a house full. No problems so far though. I do feel a little lightheaded, but I’m not sure if it could be a diet I a am on or the medicine, but it’s not too bad either way. How is everyone
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Hi There Bahamamom ~ So glad to hear from you! I can only imagine how hectic life has been for you with a houseful of family and 2 dogs. I'm sure your daughter and her husband were grateful that you opened your home and helped them out. I am doing well, mammogram is next month, so there's always that panic I feel when it's time to have that annual funfest. My onc wanted me to go off of the anastrazole when I saw her a few months ago, but I have continued to take it as she said she wouldn't force me to stop. I have been reading up on the length of time that is best for continuing to take the drug and have read that 7 years seems to be as good as 10. I am at the 6 1/2 year stage, so it will be an interesting conversation when I see her in a couple of months. I know that I probably sound crazy for wanting to continue since most people have to get firm with their onc because they want to stop sooner than is recommended, but I would rather take it as long as my original onc said I should. My original onc was on the geeky side, but I felt like he was pretty earnest and erred on the side of caution. For some reason I felt very secure with him. I trust my current doctor, but have a fear of no longer doing any active treatment. Breast cancer really does a number on our minds and bodies, doesn't it?
I am very concerned about the rest of our buddies who haven't posted in quite awhile, and I wonder how GrandmaV is doing, as she mentioned in her last post back in January that she was fighting depression. I truly hope that she and our other buddies will check in and post sometime soon. Take care and I hope your life is back to normal (whatever that is for any of us...lol!
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You (all, some, many) may wish to hear from others who do not post but I was extremely disappointed a bit back. I felt like through the years I was there for others, posting replies to concerns etc having had the experience of dealing with cancer for decades. Then, when I got the terminal diagnosis, I needed that support. i didn't get it but I didn't really really put it out there. I finally did put it out there--I posted how depressed i was and you know what I got back? nothing. well, worse than nothing....people just posting about their upcoming mammogram or about their new house or the grandkids or their weight gain/loss... I felt like I was invisible. i still do. And hence, i do not post at all. I read and I am happy for all of you who are doing well and quietly, saddened by others problems but this is not a forum for support, in my experience.
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Quaatsi
I am so sorry you did not feel any support. I am also stage 4 and have been 5 years. So if I missed it when you posted here, I am sorry. Stage 4 is a different world and many who are not here - don't know what to say and how to respond. How are you feeling - physically and emotionally? This is a roller coaster - most days I am good, but ahh the down days. I hope you are getting some support or assistance with all
Nel
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Quaatsi ~ I am so, so sorry that you feel I/we did not support you. I apologize for not being there when you needed someone to be there for you to help you through your depression. I, too, have been plagued with depression over the years and I know how difficult life can be during the dark times. I wish there was some way to convey my empathy without sounding condescending. I looked back to the posts I had made and found that although I did recognize your issue, I should have been more understanding. It's kind of hard in a forum, at least for me, to be what could be considered "preachy" or overly solicitous. I am so sorry for not meeting your need to be listened to and supported. Please, if you would like to, feel free to message me...perhaps sharing our experiences could help both of us. I know that you are stage 4 and that is something I can not (and hopefully, will not) relate to, but that doesn't mean we can't relate in other ways.
I think many of us just share our worries about mammograms, family dynamics and such because we feel that after going through our original journey, we are comfortable with others we have connected with in this forum. I am glad that you have let us know how you feel so that we can let you know that we really do care and are here to listen if you need us. I hope you will let us know how you are doing and make contact when and if you feel you can. I hope that you are feeling better and that you have found someone to help you with your depression. I know that finding the right therapist saved my life. You deserve to feel listened to and acknowledged. I will be thinking only positive thoughts for you. Hugs...
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Nel ~ I hope that you are having mostly UP days and doing well. I also hope that your summer is great and that you are doing things that make you happy every day. I am more busy in my retirement than I was when I was working. I am trying to relate to a great quote that my childhood friend shared with me. I am not sure where it originated and maybe you have heard it before. The quote is this..."When was the last time that you did something for the first time?" I hope to create many new "firsts" and I hope you and anyone who reads this will as well. Take care...Linda
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Hi everyone, I'm so sorry to be absent so long. I will try to do better. I've been selfish and cut myself off from just about everyone there for a while. I got some news that I didn't expect. I knew I had pulmonary hypertension since 2012, but it resolved once I lost some weight. Well now it's back. Doctor made it clear to me that there is no cure and it is terminal. I didn't realize that before. It threw me for a loop. Also many other problems just kept mounting up, so I just withdrew from life. My daughter and grandson live with us now and he has been such a joy. Helped me to realize that I can't give in to these diseases that keep cropping up. But to try to enjoy life while it's here. I gained 20 pounds back from wallowing in self pity, so I have to get back to the grind of trying to loose it. Thank you all for being here.
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Sorry to hear this GrandmaV. I hope that having your grandson at home helps to push through some of the harder times. Q.
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GrandmaV,
Hope things are turning a corner both emotionally and physically. This is a tough road. How old is your grandson? I hope he brings you much joy.
Nel
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It is good to hear from you all. GrandmaV, I’m sorry you have had still another illness to face and battle. It’s hard to imagine after surviving 2 different breast cancers that there could be still another serious illness for you. It is certainly understandable that you would be depressed I am glad you have reached out to us again on here,and I am hopeful that having your grandson near continues to help bring you pleasure. Linda, I appreciate your insights about depression and the caring attitude you bring to this board. I’m also glad you shared your feelings on taking the anestrozole. Quaatsi, I’m so sorry if I made you feel invisible. I have always valued your input and wish I knew what I could say to ease your pain. I hope you experience more joy and peace each day. Nel, I hope you are enjoying the cape and your work.
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I am so glad that so many of us have come back to update our situations and to try to offer support to each other even though we may not always recognize what each of us needs in a forum where we post only semi-regularly (after 7 years). I truly do hold each of you in a special place in my heart because you all helped me get through one of the worst times in my life. Having to go through treatments and feeling sick and scared while I did, I relied on all of the encouragement and knowledge (shared by everyone who contributed information) to help me to get through the lonely times, especially when I was unable to work and was home alone all day. Our battles, through the years, have been different, but I still feel a closeness to all of you because of your willingness to be a part of the journey that still continues for all of us. I hope that we continue to stay in touch because you are ALL strong women who I admire and value for your kindness, and I appreciate being able to post whatever is on my mind without fearing that I will be judged. This whole thing may sound really corny, but I want every one of you to know that I am so thankful for having you in my life. Hugs...Linda
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