De Novo Stage IV
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amontro: sometimes dreams get called "current events dreams" and stuff that is happening in real time goes into that dream. It can get mixed up with other stuff that is happening in your own life/head. For years I always dreamt about looking for toilets. They were always plugged and the floors were always covered with shit. I left my job in Human Resources and went to a job that wasn't as stressful. The toilet dreams stopped. BUT - I kept having recurring dreams of feeling like my feet were velcroed together so I couldn't move forward. I thought "Is the dream telling me I am stuck in my marriage?" I don't think so. Those stopped as well when I I retired. So those two dreams were telling me something.
Mae: you are really a remarkable lady. Post a pic of the interior of your she shed/beach bar and the painting. I am too afraid to live to far away from a major centre. And, truth be told, I am essentially an urban person. I have no desire to live in the down town core but I like the close proximity to hospitals, labs and amenities in general.
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exbrnxgrl, none of us, regardless of where we are at with mbc, needs to make ourselves smaller. There's room for all of us. Anyone living with mbc for many years is taking absolutely nothing away from others whose circumstances are different. That's why I don't understand how a bit of longevity with the disease would bother some people.
I feel guilty about a number of things in life, none of which are about mbc. I feel badly that I visited Niagara Falls three times and my mother never did, despite that we only live five hours from this natural wonder—not that she ever even expressed a desire to go there! I sometimes feel guilty that I can afford to eat at a restaurant or buy a large amount of groceries knowing others go hungry. Or that I have whole house air while some people swelter in the heat. There are other common things in life I have that I do not take for granted and sometimes have to give myself permission to enjoy them rather than feel guilt for having them.
But I can't feel badly about living beyond the average for someone with mbc. It's not like I'm hoarding health points away from others. It's not as if my experience is shortening someone else's life. We're not competing against each other. I still hope to live many more years but at this point, I am grateful for the time I've had so far. It hasn't been a picnic but I've learned perseverance. I feel that a person new to the disease or just a few years in is coming from a different place than where I am. Some of the challenges are different. Not better or worse, but different.
snow drop, winky winky 😉 on the college crush dream. Lol!
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Thanks for the pep talk divine! I never felt guilty about my good luck until several years ago when some nastiness was aimed at me both publicly and via pm on bco. A few of those members have sadly passed away, a few are still here. This was one point in time but it makes me wonder if others think that way as well. Yes, I should let it go but it shook me to the core TBH. How could anyone say such terrible things to a fellow stage IV member? Logically, I can let it go. Emotionally, it is still painful.
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exbrnxgirl, if that had happened to me, I can’t say I wouldn’t feel exactly like you do. I’m sorry they were so cruel and you still feel that to this day.
I remember a dream from last night. It was a puppy and a baby facing each other on their sides. The puppy goes in for a snout-to-mouth kiss, and they just lay there like that and fall asleep. Have no clue why, but it was a cute dream.
Divine, if it weren’t for guilt, I wouldn’t know what to do with myself. I’m working on it. You state some very good points.
I would never want anyone to feel guilt because they may live longer than me. I’m so happy when I hear someone is doing well. They are not responsible for how long I get to live, so I will always be here to cheer those who are doing well. It gives me hope too that maybe I’ll be one who gets to stick around for a lot longer.
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KBL,
I thank you heartily, especially for your last paragraph. This has been an emotional struggle. While we all can say things that inadvertently hurt others, I simply don’t understand purposely being cruel to others. The sheer malevolence of the pm’s was shocking and certainly accomplished it’s mission of inflicting pain. I am so happy that most stage IV members now understand that outliers do exist among us and like bc in general, stage IV is complex and there are variables, most of which are beyond our control.
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exbrnxgirl, you have always given me invaluable information and help to cope. I appreciate you more than you know. We can all have our differences but be there for each other, no matter the circumstances. I am sending you hugs from afar.
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I just wanted to say thank you, all of you, for welcoming me into this community. I don’t think I’ve ever been part of a group that has had more intelligence, knowledge, compassion, and support for one another. I only wish that we could have come together under better circumstances. This diagnosis is, indeed, some f’d up bullshit. It seems that we’ve all won the unlucky lottery. It sucks, but we’re here, and I wish nothing but the best for all of you.
Lauren
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kbl: what a lovely dream. It beats the Hell out of overflowing toilets. If your dream has any profound meaning it is that the world can be full of love for one another, of all beings.
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Aw, elderberry, I love that.
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Wow! You guys always give me a lift when I need it. It's great that you all rally around those of us who feel down for the moment.
Yes, I do feel guilty when others go through difficult medical treatments while mine has been the same all these years. However, it does not mean I didn't have challenges. I'm still dealing with the osteonecrosis which started in 2010. It has been devastating. I still get side effects from my cancer and other treatments. I am unable to go anywhere but to medical appointments and maybe a store, masked.
I'm grateful that I have traveled before my energy got zapped. Now, anything longer than a half hour car trip makes me exhausted. So, forget trains and planes. I manage to make it to the beach which is 5 minutes away. I can park right up to the sand, walk with my chair a few steps, and the ocean is right there! It takes all of fall, winter and spring to recuperate!
Speaking of zapped energy, didn't someone bring up the topic of losing energy in our circumstances is not the same as when we just got tired from being active? I think it was ddil.Nowadays, it's the little things that count. Thank you all for being there. Unfortunately "there" is not a good place to be.0 -
just "hi" to you all.
Trying to catch up. Too many discussions for my brain to keep track of, haha.
Stay cool.
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Hi, DanceMom. I get it. I try to keep up as well.
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So I missed my cancer anniversary. I don’t know why I thought it was August 13th, but it actually was August 1st, 2013, when the radiologist who read my MRI was dead on when he said I had lesions all over my sacrum and iliac bones bilaterally and said it looked like it could be metastatic disease. Oh, how I wish I knew then what I know now. I wouldn’t have waited six years for the answer to find me in another part of my body. So it’s been nine years and nine days. I am forever grateful to still be here.
I’ve been having an intermittent pain on my left side in the back that sometimes radiates to the front by my ribs. It’s hard to describe. I don’t think it’s the cancer, but you know where our minds can go. I’m thinking it’s muscle related, but sometimes it sends a sharp pain. I’ll tell my doc about it at my next visit.
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Hi All,
I don’t know what it is but lately I’m feeling nervous, I’m doing ok so I should not feel this way. I did just have someone who donated her house to the non- profit I work for passaway from MBC, she had it 5 yrs. I think this put me into a tail spin. I was so optimistic and this was like a punch in the gut. It makes you think especially when you see or hear of people you know pass of this disease. Then I hear of women 9 yrs out or more and that keeps me going. But right now fear set in after this woman passed who was just 69 and had MBC 5 years. 😢
Sorry to bring anyone down not my intention I just read the posts and felt I wasn’t the only one thinking this. I’ll drag myself up to the surface soon and see daylight, that’s all we can do, I won’t let this get me when I’m feeling good.
My thoughts and my heart is with all of us who deal with this. All the best
DD
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Hi All,
I don't know what it is but lately I'm feeling nervous, I'm doing ok so I should not feel this way. I did just have someone who donated her house to the non- profit I work for passaway from MBC, she had it 5 yrs. I think this put me into a tail spin. I was so optimistic and this was like a punch in the gut. It makes you think especially when you see or hear of people you know pass of this disease. Then I hear of women 9 yrs out or more and that keeps me going. But right now fear set in after this woman passed who was just 69 and had MBC 5 years. 😢
Sorry to bring anyone down not my intention I just read the posts and felt I wasn't the only one thinking this. I'll drag myself up to the surface soon and see daylight, that's all we can do, I won't let this get me when I'm feeling good.
My thoughts and my heart is with all of us who deal with this. All the best
DD
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thanks kbl. I hope you can figure out the pain thing. I actually don't know my cancerversary. Is it the day I noticed the dimpling during covid restrictions? Is it the day almost 5 months later after i finally got appointments, when my GP called to say the biopsy was positive for cancer? Was it the day my initial mastectomy was cancelled because they found something else on the scans, call this other dr? Was it the day I met my MO?
Ddil its all scary. I was too busy last month to dwell which is good. But my project is done, and then the headlines about ONJ, and reading the losses in here...it is a lot. I think its normal to be nervous. So many unknowns.
Cyathea i agree! Go ebrnxgirl!
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ddil, you are not bringing anyone down by discussing what is on your mind; that is what we are here for, to support one another. Certainly the news of someone you know passing of mbc can rattle you. You are quite new to the disease. There will be ups and downs. I think that’s normal. Over time I’ve learned some coping strategies. One is to try not to project myself into the far off unknown future and to keep my sights on the day at hand.
Some deaths hit me much harder than others. I let myself feel the emotions no matter what they are. It is okay to acknowledge your fear. As you said, you will find yourself back to a better place in time. Take some deep breaths. Hang in there.
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DDIL, I’ve been where you are. I know the feelings. I go to those feelings every now and then. What I do is make sure I let myself have them. If anyone, including yourself, tells you you shouldn’t feel that way, don’t listen. I have let myself feel the emotions, cry when I need to, tell my husband it’s best he stay away from me for a day or two because I don’t want to take it out on him.
DanceMom, I only use that date because that’s when I had an MRI to figure out what was wrong with my back after my car accident, and they told me about the lesions. I know for sure it was many years earlier when they actually started, since I was full of cancer by the time they found it. Part of me is so glad I didn’t know because my daughter was young. I would suspect I had it when she was in her teens.
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Divinemrsm
Thank you for the words of wisdom. It just hit close to home. I talked to her two weeks ago. Then I got a call she was in hospice. I did project forward. I know everyone of us is in a different place with different markets and sequencing. But it was that gut punch of reality. I truly appreciate the support from all the women here, that’s what has helped so much. I work at home so I’m alone during the day while my husband is at work so my mind can go dark. I need to learn some Jedi mind tricks on myself, like you said I’ll learn those coping strategies. Thank you
Kbl,
I allow myself to have them.. I just don’t want those thoughts. Sometimes it’s better to bury your head in the sand and just keep moving forward. I’m still angry over this diagnosis because I don’t understand how. No one has cancer in my family all heart attacks, I lived a clean life, no smoking, limited drinking, I was active, very medical savvy had all my yearly exams etc. and wham right to DeNovo. Then I heard this of my donor and it hit again. I’ll be better soon.
Thank you both for the words of wisdom
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Exactly. I was so angry that the system failed me. I can so relate. We have all heart disease in my family too. That’s exactly what I was expecting. We certainly do have a lot in common. I worked from home also before diagnosis.
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dd,
Stage IV is an unpredictable roller coaster. I have long ago accepted the idea that it’s almost impossible to predict longevity or the course of one’s disease. It is equally if not more frustrating to know that no one can say why some progress and others go for years without progression. I will say that after 11 years of mbc I have have come to accept that unpredictability though I don’t like it at all.
We buried my 94 year old father today so life and death are on my mind a lot. Resting up before the evening shiva (mourning) service. My daughter’s partner is not Jewish so I have kept busy by explaining Jewish funeral and mourning customs to him.
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exbrnxgirl, I’m so sorry for your loss. I hope he lived a joy-filled life. I’ll be thinking of you.
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Exbrnxgrl
So sorry to hear of the passing of your father. I hope he had a full life filled with joy. My condolences to you and your family.
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exbrnxgrl, I’m sorry that you are going through the loss of your father. While we can’t sit shiva in person, we are mourning with you virtually. Loss tears holes in our hearts that are never filled, but the threads of our precious memories are stitched over the holes in bandages that are the badges of love that we gave and received when we were together. The stitches on the bandages are painful now, but I pray that when the stitches heal, the threads of good memories will bring you and your family comfort. ((Hugs))
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our sweet smart supportive moth (Malgorzata/ Margaret) made her journey 🖤 she was a gem to this community, I am beyond sad, Rest In Peace sweet soul 🥀
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I am just reeling with all of the losses in the last few months. We lost Rabbit, ShetlandPony, BevJen, Moth, and I may have missed some. I sit here and think it’s been nine years for me with almost four in my stomach. I have not been through half of what some have been through. I am forever grateful, even in my struggle to have quality of life. I hate this disease so much.
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Good Morning, lovelies!
The losses are so hard. This disease sucks so much.
I had my oophorectomy yesterday. I’m super sore and full of painful gas, but overall am okay. Apparently, the Letrozole and Lupron have made my vaginal skin thin and dry, so I had a tear from the speculum. Ugh. Glad this is over and won’t have to get the Lupron shot anymore. I’m off of Ibrance until my two week follow up appointment on the 30th, so that’s a three week break. Hopefully it’ll give my wbc time to recover; they were at 1.8 and neutros at 1.1. My 10 year old starts school next Monday and has a meet the teacher on Friday, so hopefully I’ll be less sore by then.
Hope everyone is having a good week!
Lauren
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li77, I’m glad the procedure went well, but I’m sorry for the tear. That sounds painful. I hope your pain subsides quickly.
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I submitted my story to the Lobular Breast Cancer Alliance, and they posted it today. Here is the link.
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