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The new normal

Hi ladies, Your stories inspire me so much that I needed some advice and since we are all in the same boat I am hoping you can help. To make a long story short, I started on Ibrance and Letrozole which didn't work. Went on a trial that while it cleared the lesions on my liver i couldn't continue because of the side effects. So for a few months i was just on Aromisin. Well all the tumors are back and i just finished my first round of Xeloda. This is my third go round.

What I am struggling with is finding a new normal. I have always been a positive person and pretty up beat but just having a hard time navigating it this time. How do we go on with our lives and not have the C word in the fore front of all the time. I try and take one day at a time but wanted some input from you all. I do have a relationship with the Lord and pray for guidance and help in just doing what i can and trying to enjoy the moments. I need to add that during the trial they had to switch an anti-depressant I was on for 13 years and that sort of helped turn things topsy turvy. I was able to go back on it but still struggling to find the right combo. I think I may be on the right track. now. Anyway, thanks for letting me ramble and i pray for all of you!!

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First off Kim, you are not rambling. You are going thru what most people could not imagine going thru. Your fears and depression are normal. Be gentle with yourself. You are doing everything to keep yourself together and find the right treatment to live a long, quality life. As you are a person of faith, lean into it and let it sustain you. I’m also on antidepressants and go to therapy. Have you considered talking to a therapist? I find it gives me the outlet I need to talk about myself without keeping it in or exhausting my loved ones. You can read my earlier posts about how I almost cracked. I don’t have a traditional faith, but meditation and Buddhism have helped me put this disease into context and deal with my anxiety. Call SHARE if you are having a hard time. They try to match you with a woman with similar clinical issues to talk to on the phone. Unfortunately between tv adds for Ibrance and other Cancer related news, it is difficult to escape the c word. It gets easier but never easy. This is a good time to take care of your body and treat yourself. I was never into massages, manicures and facials, but I am now. Gentle yoga, and there are even yoga for cancer trained instructors out there. Meditation is a great practice. There are many books and recordings out there. One of my favorites is Tara Brach. I’m always recommending Kris Carr’s website. she is living with Stage 4 cancer and has a really upbeat website filled with mind, body, spirit resources. She is a bit sassy and irreverent. She calls herself a cancer thriver. I used to log in to her website all the time when I was first diagnosed. I still follow her online and have some of her books. In short, find what lifts you up. Have something to look forward to besides doctor visits. For me, I plan vacations. I think travel is incredibly therapeutic for me. I leave the d@mn cancer Home. This is a very supportive place, as you will discover. Sending you a hug 🤗

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Thank you so much for responding. It really helped. I checked out both Tara and Kris and even downloaded to my kindle a sample of one of Kris's books. I do go to a therapist and he does help. He worked as a psychologist at the City of Hope for seven years and only deals with cancer patients so I find him very understanding and he lets me go off unfiltered when I need to. I am on partial disability and going back to work full time in two weeks and actually looking forward to it. I think it will be therapeutic and I miss the social aspect of it. Thanks again!! Have a good week.

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I just wanted to tell you I am hooked on Kris Carr. She is so inspirational and yes I love her sassiness. Listened to a few things on you tube and ordered a couple books. Thanks so much for mentioning her. Really thinking about changing my way of eating. Not only for my self but for my husband as well. He has inherently high cholesterol and the statin drugs irritate his pancreas and has pancreatitis twice. I think we both could benefit.

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She’s got great energy and “she’s one of us.” You will feel better especially if you start drinking green juice! Good luck!

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I’m gonna at least start that!! Thanks again.

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Hi Kim!

Your expressions do not come across as "rambling" at all. It is perfectly normal to feel the way you do. After all, many of us led a somewhat "normal" life before we were diagnosed, going along with activities such as work, family life and so on without thinking about chronic illness until we were confronted with it and then our lives changed.

I know what you mean about struggling to find a new normal. I was always a very healthy, active person, and was not expecting to develop metastatic breast cancer in my 30s. It has been some months now since my diagnosis, so I have become used to it and have found my own "normal". But with my change in circumstances, I also try to look at the positives. My periods stopped within 2 weeks of starting treatment, which was a relief, as I used to suffer from very painful periods. I am able to have blood tests done at my local clinic, which is within walking distance, I get my monthly hormone injections at my local doctor's surgery, again not far, and I am able to carry on working (I am off for most of this week though, enjoying a well earned rest!) and leading a somewhat normal life. My husband and I do not talk about the disease all the time. For the most part, we carry on as normal. We still go out to eat, take trips, plan holidays, talk about the future in a positive way and we both maintain a positive attitude.

Maintaining a positive attitude is very important in my book. In the early days I was feeling very down, I lost my appetite and also my zest for life. That was when I felt at my worst physically, mentally and emotionally. But I realised I could not carry on like that, so I picked myself back up and have tried to carry on since then. As a result, I feel better about things and that shows when I see my oncologist, who is very pleased with how I am managing the disease and responding to treatment. Friends and family often comment on how strong I am. That does not mean I do not have the odd day here and there when I am feeling down though, because I do. But I try to make sure those days do not outweigh the positive days.

My faith also keeps me strong, as I know that what I am going through is only temporary compared to what the future has in store. If you want me to private message you, let me know and I will. But if you are not feeling up to it, I completely understand.

All the best,

Sophie x

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Thanks so much. Just knowing that other women have dealt with this and have had the same feelings as I am having really inspires me to focus on the positive. I do want to just try and do what I used to do and deal with the cancer when I have to such as doctor appts, scans, etc. I am up for a private message but not sure where I would go to get it. Is it on this sight. Sometimes I feel technically challenged. :)

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I sent you a private message, Kim. I went to "chat" and composed a message. So you will probably have a red alert letting you know you have a message.

Sophie

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I was also wondering how to live my life normal again. I had a break down and I gave up but I have two young children at home, i had to get myself together. I take 6 months off work when I was going thru treatments. I've went back to work and I still do my motherly duties. I pray and pray, I still cry but I make myself see positive things in life. I love life and you have to keep pushing. Good bless you and everyone else with mbc

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Thank you so much and God bless you too!

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Kim, you have expressed feelings that we all have. You are not rambling at all. It sounds like you have many tools to cope and the fact is we just have to keep working on keeping a positive attitude . whether it is our faith, therapy, antidepressants, marijuana, excercise etc. I believe it somehow is not a new normal. There is nothing normal about our situation! Love and hugs to you! You are a brave warrior!

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Dear Kim,

Your words speak truth to all of us, no matter how long we have battled this disease. I guess that eventually it's like that last stage of grief, just the simple acceptance that this is now a permanent part of our lives. Whether we dwell on it or find a wide range of distractions--this has become our "new normal." I sometimes find myself in the "dwelling" mode, particularly if I wake up in the middle of the night. But "looking forward" can be as simple as reading a few chapters at a time of a great book.

I do believe that this MBC website with posts by so many compassionate, empathetic women has made the journey much less lonely. It is like a lifeline of inspiration and education.

You are in my prayers, Kim. We have all been dealt a nasty hand. May your oncologist and team be skilled in their recommendation of your new treatment. And may God shine His healing light on you as you "move forward."

Love to you, sister! XXOO Linda in Seattle

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Amen

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Hi Kim,

The ladies are right, you are not rambling, everyone is dealing with the same emotions as we walk this journey.

I find mornings the hardest as that's a reality check as to why I'm not at work. Since you are a woman of faith, as I am, I start the day with my Bible devotions so that I can plug myself in to Whom I can trust in all things. It helps me to straighten my crown and stand tall knowing I'm the daughter of The King! Exodus 14:14 The Lord Himself fights for you. Just stay calm.

I often listen to a meditation in the mornings and before bed. Abide is a great app if you prefer Christian meditations. I also like Kris Carr as she is an inspiration. Walking, or some type of daily activity will boost those endorphins! Diffusing 100% therapeutic essential oils is also beneficial. Research shows just inhaling them has a positive affect on your brain health. My doctor prescribed medical CBD oil which I take faithfully 3 times daily. It helps with feelings of depression, anxiety and elevates some of the side effects from the meds like stiffness. I also try to focus on feeling very blessed that this cancer is treatable. I stay away from googling MBC, but read survivor stories to give me hope. I surround myself with positive and supportive family and friends. Other then not being at my teaching job, my life is pretty normal. This new season has given me the opportunity to slow down and focus on doing the things I didn't have time to do before like taking courses and serving more at my church. Like everyone else, I have my good days and not so good days, emotionally. I've noticed that my worst days are just before seeing my doctor to get my scan results. Being on this site is a great place to stay connected to others who are experiencing the same challenges as you are. There is a lot of knowledge, good advice and support here.

Blessings

Dawn

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Thanks Dawn for the encouraging words and yes mornings seem to be the hardest for me too. I am on partial disability right now but going back to work in a couple of weeks. I think it will be good for me. I am lucky in that I have amazing support. The best family and friends a girl could ask for. I have come a long way and try not to let the not so good days make me feel that I am hitting bottom again. I see a therapist who only deals with cancer patients and it is very helpful.

Love to you,

Kim

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Sending you love and hugs. I also listen to Pastor Rick Warren everyday on Daily Hope....so encouraging. My go to verses... Isaiah 41:10, Jeremiah 29:11, Hebrews 6:19

Blessings

Dawn

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Is that on the Saddleback website. Not sure where you are but we are members there although not very active lately. I would love to check it out.

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Hi Kim, I downloaded the Daily Hope app on my phone. You can also google it online to listen.

Really? I love Pastor Rick. I am in Calgary but our church is modelled after Saddleback.

Blessings,

Dawn

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What type of work do you do? I really think any type of work will keep your mind off of m bc for a few hours. Go back to work really helped me.

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I agree about doing some kind of “work.” I work full time in a school. Truthfully I’d like to make it part time, but need the benefits. I am tired, some days fall asleep on the couch sitting up with my mouth open (yuk). But work has saved me from making excuses to sit around and get morose and watch too much tv. Some people are incredibly self motivated and can create a daily routine and stick to it. I have a lot of good intentions, but I am a person who needs structure imposed on her. I am stubborn about breaking bad habits. This school year I am organizing myself so my routine includes daily meditation and healthy eating. It takes active planning and not just a good idea. One day at a time. Today I came home and had a healthy dinner and listened to my Tara Brach mindfulness podcast. What a difference 2 doable changes make.

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I also work in a school. I'm a headstart teacher, lol. They keep me busy. I have bone mets only. I feel good, pain when I get home but I take Aleve and it helps. Thanks for responding to my text. I read a lot of bone mets female/men work full time, I think that's great. I hope we all keep doing what we love. Fight for a cure!!

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I have bilateral lung Mets. I’m the school nurse! I just listened to a Tara Brach and Jack Kornfield podcast in mindfulness and decided for $37 Id subscribe to all 40. Just that 15 min made a difference in my attitude.

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What are your treatments?

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Ibrance and just switched to faslodex from letrozole because although I had no new spots a few grew a little. I’m in the initial dosing of 2 shots every other week. After 3 weeks I’ll go to once a month. Inconvenient because I have to go from central jersey to nyc where my oncologist is. But if it works, I’m good. My husband and I try to do something nice after the shots.

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I hope the faslodex works well for you. I was on it for 11 years, had no side effects and at least for the 11 years it worked. :)

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I’d love 11 years. Thanks!

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Hi there. Now that you have been on faslodex for a few months, can you share how you are doing? I went off letrozole and to faslodex 2 months ago. Onc said we wont k ow if it is working or how it is working for 3 months or so.....I told her this is a bit creepy...having to wait 3 months to see results.... it is a painful two shots. I say I am going for PITA now to my friend. You know this acronym? Heating pads help. You mentioned you go to the city for this. Me too. NYU Langone. Would this be where you go as well?

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Also NYU. Small world. I will have scans in about 3 weeks so I can share with you then. I feel ok. Agreed the shots are annoying and I’ve had 2 that were really bad and left a big bruise and something like a burn. I am more proactive about telling the nurses what works best for me. Stay tuned and cross your fingers. I will report back.

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Thank you! Good luck!

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I see that you are on Faslodex. I was on it for 11 years with no re-occurrence. I had no side effects other than the occasional PITA. :) I hope it works for you.

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Oh thank you! Good to know you got 11 years out of it! What are you on now?

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I had to go to an oral chemo drug called Xeloda. Hormonal therapies weren’t working any more for me. So far so good.

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I like both Tara and Kornfield. Do you have Insight Timer? A great free meditation app with lots of meditations, including from those two. I use it regularly. :-)

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Yes. Haven’t been good about it for a few weeks. Getting back into it now.

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I will try that - thanks.

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I do work and am partial disability right now but will be going back full time on the 17th. I agree, when I am working it takes my mind off things so sort of looking forward to going back. While on partial disability I am working from home and while it keeps me busy for a few hours a day its lonely. Will be glad to have interaction with people who don't know my situation. I am a bank auditor.

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Thanks. I just downloaded it.

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Thanks for reaching out to this community. It's very supportive and I see you have gotten lots of good responses and recommendations. Not much to add, except that keep on moving forward and do what you must to keep your head above water. I'm not a fan of the "new normal" because our situations change so much from treatment to treatment and recurrence to remission. It's a roller coaster ride for sure. I've found many things that help me, from alternative treatments, complimentary ones, positive thinking, supporitive family and friends, and just moving forward with life as it is in this moment. I don't ignore the "C" word, but know it's one chapter, not my entire book. Hope this helps in some way. Many good thoughts are headed your way. :-) Lynn

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It helps a lot. Just reading all of these responses has really helped me try and re-focus. Thank you Lynn!

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I think about it all the time - the disease, time, family, scenarios....it’s exhausting. I guess with each “bad news”—it feels harder to get up this time.

Gotta surround ourselves with good examples, positive stories.

Because being negative can become a habit...healthy habits - positive thinking can be too.

🤗

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HEAL is an amazing uplifting documentary which I suggest watching if you can get your hands on it, or on Amazon prime I believe. You can see you tube video clips of it first to see if it is up your alley.

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I agree. Of course I want the treatments to take it all away but realistically if it can just remain stable I would be very happy. I think being clear for 11 years gave me a false sense of security. I have read though that women on this site were clear for longer than that. Am grateful for those 11 years but looking back now I wonder where they went!! Time flies. Trying to stay positive, do more things and stay in the now!!

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That's amazing you stayed clear for 11 yrs. What type of mets do you have?

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I was first diagnosed in 2002 and had a bilateral mastectomy. Then they found it in one spot on my right hip in 2006. I started on Faslodex monthly which worked for the 11 years. They found it in my liver last August. :( Not sure if you have seen other posts from me but when they found it in my liver I was put on Ibrance and Letrozole however it didn't work. Then went on a clinical trial through UCLA (that is who my onc is associated with) and it kicked my butt and i couldn't stay on it. It was 3 FDA approved drugs just not used at the same time. It was Aromosin, Affinitor and Kisqali (kind of like Ibrance). They cleared up the tumors alright but I just couldn't handle the side effects. They left me on the Aromosin but after my last scan found the tumors were all back so I am now on Xeloda. Just getting ready on Friday to start my second cycle. Hoping this will work. Won't have scans for a few months.

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Sister/Warrior/Over-comer : The Lord will not leave or forsake you. I pray you will have 11 plus more years to live, love, and laugh with your loved ones Amen ! I like to read Psalms when I need encouragement. I also like to read the stories in the bible where people faced, and overcame challenges. I also like to listen to a variety of upbeat gospel songs. XoXoXo.

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Thank you. I pray for that also!! I will pray for your sister who is dealing with the same issues.

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Thank you and, God bless you sister

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