My Husband, My Life, My Love, My Family, My Cancer
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On pocket duty and enjoying the crew with Pots. I can’t get in any scan machine without Valium or whatever they give me.
Grannax the pre meds can have serious side effects. They affected my equilibrium.
Mel I’m on month 26. Someone on the ibrance thread figured it out in the increments that we take it, every 28 days. I think it’s 13 a year and then July and August so 28? Started on 125 went down to 100 then 75 for 2 months now back to 100. I couldn’t get out of the bed on 125. I do have the medical marijuana too. Have you used the cream or oil? Any recommendations? It definitely takes care of the pain and sleep issues
Tanya
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pots I’m in your pocket too!! I also take a Valium with my scans. I have panic attacks if I don’t and I hate that feeling so much. So much nicer to let the medicine do its job and help me stay calm and relaxed throughout the whole thing.
Iwrite I am sorry to hear about your friend
just as I read your post my BFF messaged me to tell me she has to go back in for a diagnostic mammo on Fridayafter having a screening mammo a couple days ago. She is very angry and feels inconvenienced right now about the whole thing. I am hoping and praying that they don’t find anything!!!0 -
I'm new to the metastatic world just dx in 03/19 with bone mets to spine, after one year of finishing treatment for left breast cancer.I never had any symptoms, all the dx was found by accident (breast and bone mets). I did very well and thought I was "survivor" just going to f/ups from now on. I hoped and prayed that it would never come back again. I was so wrong.
Reading all these posts I identify with all of it. My husband is more than an angel, I don't have any other way to describe him. This year we celebrate our 20th anniversary. it breaks my heart to think I'll be forced to leave him this way. He is such an amazing person, that I was the one that feared he would leave me one day for whatever reason and break my heart. Now I'm the one doing this to him and there's nothing I can do to avoid this. I just started treatment with Ibrance/letrozole, had radiation to neck and low back. Right now I'm still not having any physical symptoms, besides some minor side effects that is totally insignificant if that was the only thing we would have to deal with. But my mental status is just a mess. I'm no longer a happy person I used to be. I'm having a very difficult time to live the present which right now I'm in good health, because I'm in panic of what the future holds. I know nobody knows the future, but for us dx with this disease its impossible to think of a bright future, or any future for that matter. How you ladies manage to be happy now, in the today? I'm still doing everything normally, working, going to events, traveling, etc. But the sadness in my heart is so big that lately is coming out in the form of tears, negative thoughts and wishing that my life to be over at once. No, I'm not suicidal. But I wish something would happen and just take my life at once to save me from this slow death process if that is what my future holds. And I know that acting like that I'm hurting my husband even more, he who is the person I would never want to hurt. But I can't help. Right now I feel like I'm living a lie because this is not my life, my life is gone already since I was first dx. this life I'm in now is something else.
Thank you for letting me vent here, and thank you for all your comments in so many subjects. It does help to read how others feel.
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Thanks ladies for jumping in my pockets...I had capris on today with good wide pockets so you all fit in on the left side. As corny as this sounds, it makes a difference knowing that I was not alone during the procure. I thought of you several times when I when I had to lie still on my right side while he pushed the needles in deeper. Thank you thank you!
I’m back home now and feel pretty good, just groggy from the Ativan. My son is arriving today from the east with his new girl for a visit so we’ll have everyone together for the first time. So excited.
Be well,
An
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Sad,
My heart breaks for you. I also struggle with sadness. It has gotten better. This is a great group of ladies and we are all here for each other. I finally broke down and started seeing a psychiatrist. He prescribed some antidepressants which I just picked up today. Others here have said they help. I was never really religious before, but I have found peace in reading the bible and also bought a couple of books which has a daily uplifting religious message. Not sure if you are interested, they are Trusting God day by day and Jesus calling. Both books just have one page to read everyday.
I also keep a journal. I don't write everyday, just those days that are a struggle.
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Sad1~I am sorry that you find yourself here in the club no one wants to belong too. I feel still raw in my soul and it won’t ever end. Three years Nead. Mentally, most days I muddle
By with almost a couple hundred tears shed. Some days are better, but taking it one day at a time is the best way to Attack it. I am also sorry for your lovely marriage. My DH is my world, I love him and I love our Love together and our life togther. This wasn’t supposed to happen for any of us. It’s makes me infuriated daily. I feel all of the things you feel. I am so very sorry, more than words can express. More than words could ever begin to express.
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pots~very glad you’re home. Please rest up and know, that part is behind you. Hugs to you. Sorry if we were noisy. It happens. Get your comphies on and just chill!
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Micmel,
3 years Nead. Congrats! That is awesome.
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Glad to hear you are doing alright Pots....was thinking of you all day.....
My chemo and appt with Dt Angel got moved up to tomorrow...anyone available for pocket duty? I'll bring the cookies...
Gundoctor
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GumDoctor~You Know we will all be there. Snacks and drinks. Hand and hand. Hope it's quick. !
Pots~ Hope you’re resting!
Runor~thinking of you...
Grannax~Hello sweet. Hope you’re comfortable and you. Are healing from your port surgery. I remember they were like okay port one day. Two days later chemo! I was like noooo my chest felt like someone hit me . And if I coughed forget it.! Hope you’re doing well tonight. !
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Gumdoctor I’m in. I don’t need snacks I’ll bring m&m’s.
Sad1 welcome to this world. After the initial shock and horror we are all taking one day at a time. We’ve accepted life the way it is now bc we have no choice. Taking one day at a time helps, staying busy, enjoying good days. We struggle for sure but just try to do what we can. Some of us take antidepressants, medical marijuana whatever we have to do to cope. Lots of tears and anxiety. For me as time passed it got better. The treatments vary. There are many new lines of treatment. We are all hoping praying for a cure or much more time to spend with our loved ones.
Tanya
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Gumdoctor- I too am in your pocket. With the Doritos. Maybe not after chemo, Yuck.
Sad1- Bless you. I am glad you found us. We are truly a family here and you can get a lot of help from us. I cannot give any advise on the husband thing, because I am single. I post on this thread even though I am single, Haha. I can say I totally understand the feeling of losing your happiness. This diagnosis changes a person. It has me. I still have times of happiness, but the shadow of sadness is always present in the background. Innocence lost. Not to pry, but if you have a religious faith that can be what you can hold on to. I do have faith and I hold tight to that. Your diagnosis is fairly new. You need to grieve. Anger, sadness, it is normal. If you can see a counselor I think that would be good. I would like to talk with one, but my finances will not allow that but I get my help from this site. The ladies here are awesome. I pray for each one daily and I will add you to the list. If you ever want to PM me, you are welcome.
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Sad1, my heart breaks for you. I am not Stage IV...yet. I never assume that this chaotic journey is over. Since my recovery from my initial diagnosis I feel an urgency to accomplish things in my life. Sometimes it’s a pressing urgency.
I read this thread because these women teach me so much about living. They have an appetite to grab hold of life regardless of this hideous disease. I don’t mean to imply that life is wonderful for these sisters. They walk through some very difficult times. But they are not afraid to travel or do life in whatever way they choose. They just go...
As devastating as a metastatic diagnosis is...many can live a long time with bone metastasis. I am so sorry you have been dealt this hand in life. Sending you thoughts and prayers as you sort things out. Do try the antidepressants. They really do help.
((HUGS))
Barbara
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Big hug Sad1. I understand this feeling. I got my diagnosis in March too after 24 years of being cancer-free. I have a few really good days where i'm feeling confident and strong and then something knocks me right on my keister and it definitely takes me longer to get back up. I just spent two days really weepy throughout the day just from anxiety and uncertainty. I want my sense of certainty back. I know none of us REALLY has certainty in our lives, lord knows I learned that the first go-round with this monster, but I'm surprised at how much I want it! I want to be carefree and thinking about the future. Now I don't know WHAT to think. What's the future? Ten years? A year? This afternoon? It's just not fair to be forced to entertain these things. Plus I want to run around with my grandchildren. A year ago I was going on amusement park rides with them and now I'm such a huge fracture risk that just bumping into me could be a problem. (that's a slight exaggeration but it feels that way some days) So of course now THEY have a boundary around me of being a little careful.
Gumdoctor, wishing you all the best tomorrow with your next chemo.
I'm on month 4 of 125 ibrance. I'm not having too too much trouble at this point but let's see how I feel if I get to stay on it for more than 2 years. I do have some pain in my thoracic region from a pretty serious compression fracture there. It's not bad, though I would really love to being using MM for that and sleep. I take Xanax at night if I'm anxsious and that helps me sleep but I'd really ratherMM. My local support group is really helpful with that and how to use etc - Ijust haven't quite gotten to that point yet.
It's rainy rainy rainy here and my sister is on her way up from Philadelphia to visit me for a few days. She's been like a rock, as have all my sisters and my husband. I just can't say enough about the fantastic people in my life like my good friend Fran who let me lounge in her pool and listened to me cry my eyes out the other day.
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Hi All - Thanks to all who did Pocket Duty with me today. Dr Angel approved moving dorward with Abraxane today with a 10% dose reduction. We are heading home now.
I hope you all enjoyed your snacks too. I had goldfish crackers.
Gumdoctor
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Hi Sad1. I too am a recent Stage 4 diagnosis. I did have the benefit of a few years of ignorance, just doing follow ups for 3 years before the recurrence/Stage 4, although my consulting oncologist feels I was Stage 4 from the start, just not found. But the initial visit with the general oncologist telling DH and I was a shocker, since he told us I had 18 months to live. It was a moment of terror with a devastating sense of loss, most particularly I felt, for DH (he lost his Dad at age 13, and his Mom 9 years ago). I had several dark days with many tears, mourning weddings and grandchildren unborn (both my kiddos are single in their 20's), and trying to figure out how to help my family pick up the pieces. Then we had a second opinion. My consulting oncologist was a breast cancer specialist and she told us she expected me to have several years and that we should go live life and not really worry, since her experience now is that for some people Stage 4 is more of a chronic condition. That was the catalyst for me to break out of the fear and terror, enabling me to consider a future. It has been a process. My good friends helped by noting that I no longer cough all the time (nagging cough started at the beginning of the year), and that I actually just look better--more like myself.
Yes, this is not the life any of us planned. But many treatments provide more years than in the past, so as many folks here have noted, this is just a new normal. Different certainly from what any of us hoped for, but not an immediate life sentence.
I hope with time you will find a new and happier normal.
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Gumdoctor, happy you are on your way home!
Micmel, Great on the nead!!! I keep my fingers crossed for such news.
All have a great day.
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Movingsoccermom,
Well said. And I couldn’t agree more with what the doctor told you about MBC being a “chronic condition”. I heard the same thing from my onc, and she also said there are many, many treatment options, so it could take years before we have tried all of them. The bottom line is that our doctors can only predict how long we have. They simply don’t know.
Sad, I too welcome you to this thread. It is full of lovely people who care about each other. We will lift you up when you need it, and eventually, you will do the same someday for another MBC newbie. I am one of those ladies who refuses to give up one more day worrying about this disease. One of the blessings I have received is it enabled me to go on permanent disability at age 58. Financially, I would never have been able to retire that early. So I look for the silver linings. They are there if you look for them. May God bless you today, and you feel His love through us
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Gumdoctor Me too. I got my GEM/Carb without antiemetics yesterday. What a stretch out of my comfort zone. But I stood up for myself. It sure wasn't plan A, or B maybe C on how I had imagined it would go. But it's done. Now, the proof will be in the pudding....Will I be vomiting for a few days? I don't think so, will I be constipated this week? Nope, already know that. Lol. Glad you got your second TX. Yay for self advocated women.
Hello newbies. You can see this thread is about everything even TMI stuff. But it never gets boring here.💞
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Good for you Grannax standing up for yourself. Hope you feel fine in the tummy.
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Hi Ladies~I am here and reading. Just having a rough week mentally and physically. No one tells you when you're done playing with cancer, you can't put away like a game on a shelf. It follows us everywhere. I'm sick of cancer. I hate it.
Love you ladies
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hey Micmel - right here with you sister 💛💛💛 I hope that you are able to just take the care of yourself that you may need at this time to help you feel okay and make through each day. The psychological strain can be so taxing!! And the physical strain can be so exhausting!!
I am feeling sooooo wonky lately! Like tired allll the time and very foggy headed and spacy. I feel slightly guilty being at work and treating patients under these conditions. I just don't feel sharp at all! I have to write long reminder lists or else I forget EVERYTHING. I am having so much trouble finding words and remembering what I am talking about one second to the next. It's so frustrating 😭
I love the medical marijuana it eases my pain and stress at night and helps me fall asleep - I only use a little at night before bed but I am wondering if it is making me spacy or is this simply being in treatment for cancer that is causing this??????? It feels awful!!!
Love you Micmel and everyone!!!!!!
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wonky is a good word. That’s how I feel. Drugged. Zombies. I want to really turn back time and be who I used to be.
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I get it Micmel :-/
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Philly~I know you do. Yes I do. I don’t even know how you manage to work. You’re amazing. I meant to tell you how strong I think you are. Wonderful friend.. do you ever come up to the suburbs of Philly ever. I am from near doylestown. You’re the closest person yet. BooBoo was in Philly area but she moved. That was sad! I was wanting to meet her. It helps to have a friend. Who truly gets it.0 -
Reading your posts Philly and Micmel. This is so tough fighting this disease all the time. Micmel- I am sorry you are struggling right now. I think the mental is worse than the physical ( at least for now ). And Philly I admire that you are continuing to work. I don't know how you do it. I am off work now and looking at officially "retiring" from my career by the middle of Sept. I know that people cannot really understand us if they are not going through it themselves. And I know I should not care what others think, but I do. I had a friend text me yesterday and ask if I am enjoying watching TV. I think it was a dig since I am not working. Philly- Maybe the wonkeyness is from the MM use at night. I have never used it- medical or recreational- but maybe it is making you feel cruddy during the day as residual effects. For me it is the fatigue and not able to tolerate the heat of summer. Friends think I should be active in planned things but I just don't feel like it. I find myself just wanting to stay in my cool house and read a book or watch TV. Maybe some depression at work also. I do wish we all lived in close proximity. I would love to get together with you all and hang out. Bet none of us would make me feel like I am faking it or being a hypochondriac. Hugs.
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Lovefromphilly,
I was taking MM nightly and I also sometimes felt spacey. I quit taking it just to see if that was what was causing it. It wasn't that for me. I still forget things and sometimes I get alittle confused because of the fatigue.
I am so grateful for this group. I love My friends but they also don't get it. When I tell someone about the fatigue they just respond they are also tired.
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Candy~I think we would all love to be able To Be together. It would be so amazing. Not even needing to speak a word and understanding is there. Everyone around me gets upset when I talk about a time when I won't be here. Like I'm being ridiculous or making others sad. I'm like hey people wake up here. I'm a ticking time bomb. I feel exactly the same way you do about the Heat candy. No can do!
Philly~ ibrance sucks the life out of you. I believe it's the treatment. I've had medical marijuana for over a year now and I don't know what I would do with out it honestly. I'm sure it makes me tired. But honestly. I don't care. It soothes my mind. Calms me down and then the tears dry up for a little while. A little while.
Mae~Tap tap
Muddling?
Bigbhome~Traveling soon.? Awesome And so jealous, you're seeing my best friend. From here. Lucky duck!
Tanya~Hi honey
Grannax~ you go girl!
Sad1💞♾
Gumdoctor~ thinking of you
Minnie🥰
Simone~Hello darling
Masonsmomma~Hi there!
Movingsoccermom~Hello absolutely hope you're well!
I write ~😃💗
Jensgotthis~Hello beautiful
Blueshine~🧡
Runor ~ ❤️❤️
Bella~Hi honey
Rosabella~ hope you're doing good
Yndorian~💗♾
Anyone Ive missed I'll be back!
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MarianElizabeth~Hope you’re ok! I know you’re having a hard time.
Elleonwheels~How are you feeling ? I hope good!
Marie~Haven’t seen you. Hope your ok.
JKL......JFL.... hope all is well!
Pots~ how’s it going?
Skitz~ haven’t seen you
Stillivin~where are ya?
Miss Bianca~ disappear?😪
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Mel and Philly, when i come down to visit my sister next summer, let's plan to hang out ok? (She lives in Lansdale, is an adorable person who singers barbershop in a group called The Liberty Belles. I love it! )
I updated about my follow-up on the Ibrance thread. I'm a worrier so even though I sound pretty upbeat I'm actually anxious about the uncertainty of the results and I guess I'm trying to talk myself into being ok. Acting upbeat allows me to stay in denial. Down deep this disease scares the sh*t out of me. It will be a xanax night tonight I'm sure. DH made me some cookies with M but literally one bite is too much for me. I'm starting to wonder if it's not time to start an antidepressant.
By the way my former compression fractures have progressed further so this was not good news. I am not a candidate for kyphoplasty becuase I'm not in pain. So I stay in PT and continue to get shorter and shorter.
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