My Husband, My Life, My Love, My Family, My Cancer
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I Love the turkeys Mel. My dinner was really good.
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I am glad you enjoyed your dinner!! Ours is so late this year. Why I'm not sure. Now you'll have a turkey induced sleep. I'm glad you went! Sometimes I try to push myself also. Sometimes I can and others not so much.
I hit mental brick walls daily. I sit and think, how do I live? I wake up, but what should I do? For someone who is so worried about loosing time, for now it seems like it's all I'm faced with, uncertain time. I wake up everyday wondering, how the hell I'm going to fill another day with things to prevent me from Breaking Down into an ugly cry yet again.
I never dreamed in a million years that this would ever happen to me. I honestly still think I'm in shock. It's like a switch was thrown I can't turn back. My life has forever changed. I don't really like who I have become now. I honestly don't. I have no energy, a paper sewn up body from all my surgeries and no place I really belong. My DH works his ass off, for what? To take care of a woman who could live for a while, but also could maybe not, and constantly have to put his 110% because I can't even do %50 anymore. It's just not fair. I often wonder why this has happened. What have I done. What did I do to deserve a stage effing four diagnosis? What in the world happened to us ? I'm so sick of being the cancer person. I'm running out of people to tell how poorly the treatments are and the damage that has been done from the heavy chemo i have had. Or the damage my joints are taking from the anti hormonals. It's like taking oil from an engine. The parts dont slide. Well together. I feel like this specimen in a huge tank and someone is testing things on me. Just like we do with mice, Like I'm some experiment or something. I just can't accept this lame person I've become, no less how long I have left. Torture plain and simple.0 -
I’m here, just slightly hungover. A friend flew to LA to hang out with my DH for a few days, so his wife came over for a Margarita night Saturday. Waiting for my H&P treatment now, then back to normal tomorrow.
Mara, don’t be too hard on yourself for getting upset, I’ve cried each time I’ve had an accident like that, after being angry I’m just relieved I was home and not wearing white.
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Mae I think you nailed it. All these SE's we have to take them in stride and look for the positives. We can't get rid of them they suck for sure.
Mara I'm happy you made it to and through the dinner. Socializing with loved ones is a mood booster.
Mel love the turkey fight pictures. Sounds like you're having a mood swing funk. You're worth his 110% by the way. You're gorgeous and you're a sword swinging Viking warrior.
Tanya
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What Tanya said Mel. Some days are just downers. I have a lot of them too and I hear you my sister! Much love.
Mae, were the two of you drinking margaritas all weekend? You said she came over Saturday night...how long were you two partying for!
I love turkey. That was an interesting picture of the fighting. We found a section of our backyard torn to shreds last night and we couldn't figure out WHAT in the world happened there. This morning we found deer poop in the area so a couple of deer must have been arguing or "in the mood" in our back yard sometime late last week. Not too unusual except that we live in a small quaint little village of homes and businesses. My yard is tinyyyy and bordered with tall privet hedge. They must have been walking right down the street and come thru the hedge somewhere. Crazy.
My new meds have been approved by the insurance company. I can start taking the Aromasin anytime. Afinitor I have to wait another ten days to let my counts have a chance to come back up. I hate hate HATE starting new meds. But I'm hanging on KLB and sbaaronson's posts about it to calm myself down. I am praying I have experience like theirs.
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Hello all on this Monday.
Mel- Sorry you are in a funk. Wish we could hang out together this afternoon.
Mara- So sorry you are having all the issues with your gut. Glad you got to enjoy family though.
I am kind of blah today. Back/spine is hurting today. I did do some housework today- vacuum and mop- small house and rest periods between. I love a clean house. And the weather is great today- sunny and upper 60's so the windows are open to air out the house. I also rested with a heating pad for a while this morning. Getting a little more anxious about upcoming scans. They are next Monday. TM's slowly rising over the last 4 months and my back hurts more than it did. We shall see.
Seems quieter here lately. Maybe not, just seems it. Hopefully people are just busy.
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Supper was good, no issues last night even after a large dinner. Everybody did kind of stare at all the pills I brought to take before dinner but everything sat very well. I appreciated having my mother's recipe of stuffing, love that stuff. Turkey was good, had a little salad and bread with gravy. Dessert were cookie dough brownies as well. My DB is a good cook and baker. He took all the cooking talent in the family and I had a lovely time. Even the big dog was very well behaved, no jumping.
Today is my mother's birthday. I decided to acknowledge it. Watched the birthday video from last year of her getting her cake, and us singing. After it was over, wished her a happy birthday wherever she is. Surprised that did not make me sad, but decided just to treat it as a happy day because this was the day she came into the world and she is in my heart. That makes me feel like she is still in my world. I am happy today, not sad which is a big step. Next holiday will be Christmas. I plan to feel her presence that day too. Makes me happy and not miss her as much.
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Mel, I wish I could make your day better. I empathize with the downer days more than you know. There are some differences, but for us all, we all have some idea of how you are feeling. It sucks and I totally wish we could at least have some more good days than bad, what does that look like for each of us? It's different for us all. One person may find that a smell triggers a pleasant feeling, a TV show or movie gives us a pleasant feeling, or really anything. I hope everyone finds something for themselves when it is needed so that when it is dark, they can get out into the light sooner as opposed to later.
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I don’t think I’ll ever be able to catch up on this thread. But, I can catch you up on me.
I wasn’t able to get my infusion on Friday. This time my ANC was only .7. I’m supposed to have it tomorrow. I hope it’s up enough. My HGB is 9. My MO decided to reduce the dose of Gemzar and remove Carbo. Hopefully this TX won’t be as toxic. On the 22nd I will have a PET, labs, MO appointment w results and infusion. It will be a long day.
Both my grandchildren have October birthdays. I got to go to their family dinner party. That was fun. They are now 8 and 13. I’ll post a pic.
Except for that event, I’ve stayed close to home. Just feeling low energy, etc. I will get the Neulasta patch on the 22nd. Maybe that will help.
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Grannax, beautiful grandchildren. Hope you all have a great time celebrating their birthdays.
I am also thinking of you as well and hope Neulasta will be the key to bring up your numbers as well. Best of luck.
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Grannax thanks for the update and the picture share.
I’ll be in your pocket on the 22nd.
Tanya
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Just heard this bit of thought provoking opinion and thought I would share it here. These are not my own ideas. They belong to someone else. This person said that the psychology field makes a grave and flippant error when they refer to the state of depression of a cancer patient as a 'mental illness' that needs to be treated. Or overcome.
Your mental state when you are diagnosed with a serious medical condition is grossly diminished and reduced to be called 'depression' and to be treated as something you have to get over. As if it is an over- reaction to a not very serious problem. The FACT and the TRUTH is that cancer IS INDEED A VERY SERIOUS, LIFE THREATENING PROBLEM and a frantic, depressed, sorrowful response means that you are INCREDIBLY SANE. That is an appropriate response to the severity of your real state. To think that people should get news like 'it's metastatic cancer' and NOT be depressed is an utter failure of the mental health industry to be real, honest and (my words) pull their head out of their ass. It places the blame for this mental misery on the short comings of the patient. Oh, you should be diagnosed stage 4 and skip off into the sunset, happily humming over your endless fucking treatments until they quit working, yippee and hooray. WRONG!
So. I heard this (which has been embellished by me, but you get the basic idea) and I thought yeah. Yeah. Cancer didn't only rock my body but it rocked my WORLD and my view of myself in the world and my view of the world itself. Everything was thrown off course into a whole new orbit. And to have anyone pat me on the hand and even suggest that my mental state is a wrong response that I have to deal with .... well someone is going to get a punch in the neck!
If you are feeling bad that you are feeling bad, cut yourself some slack. In fact, view those who are NOT feeling bad with a slightly suspicious eye. They may be DOING well despite feeling like hell and that's a whole other story. And I think (my opinion) the ONLY way that many of us can move forward. To accept that we feel shitty in our bodies and in our minds but, this is it, this is where we are, this is the shitty hand we were dealt, and we get up and put on our lipstick and shave our armpits and live what our lives look like now. We show up. We maybe don't have the same metal obliviousness we used to. BUt we show the eff up and get the job done anyway. THAT is what I strive for. Not feeling great. But doing what I can despite how I feel. Mentally. This is not getting over depression. This is getting on with things inspite of depression. Those two things are absolutely not the same. But something in my head pinged when the speaker said the mental health industry has it all wrong about depression and grave critical illness. When things are grave, feeling grave is absolutely the sensible thing to do.
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ruror there’s nothing that I dislike more than people who shame mental health issues. It’s an awful thing to do to someone, and completely isolates and boxes a person in. I like to say #NotHelpful. There were so many things when I was first diagnosed that I would respond to with that right there: hashtag, not helpful!! Point usually gets taken unless the person is incredibly thickskulled.
On another note, I shared this on the Ibrance thread and it also seems appropriate to share here too
My family and I were featured for a video about genetics for breastcancer.org. Here’s the link:
You have to scroll down to find my video...
At the bottom of the video on the right hand side, there's a link to open it in YouTube. If you click on that link, you can play the video on full screen.
https://www.breastcancer.org/symptoms/testing/genetic/relations
Love,
Brenda
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Brenda, thank you for sharing your experience with genetic testing but also showing a glimpse of your wonderful family and career. You all look like a lot of fun and I love the singing as well. I also share your interest in working out, for me it is more of a mental health treatment almost. Thanks again for sharing with all of us.
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You ok Mel?????????? You haven't posted in a couple of days.
I cannot do roll call like Mel. She is so good at it. Nice to hear from runor, Philly, Mae, Tanya, Grannax, Moomala, Mara. Where is everybody else?????????????
This thread seems pretty quiet these days. If you are reading, but not posting, PLEASE chime in.
I don't want this thread to dwindle down. It is needed. For me. And others, I am sure.
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Guilty! I’ve been reading but not posting much. Anxious about starting new treatment PIQRAY. To be honest, I had to take a break....so many sad discussions, it was making me really depressed. I love each and every one of you on this thread, but sometimes I just can’t take any more bad news. Especially the loss of a pet. My two Yorkie boys are what keep me going....my hubby is in big denial about my disease, so my boys keep me calm and sane. My heart breaks for Mel and what she is going through. I’m hoping the sun will come out and shine bright on all of us today. Mel, if you’re reading, please know that you are in my prayers.
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Hi ladies. I am here Just in a funk. I am not happy with the moderators decision to change this threads category so quickly and with no discussion. I didn't want the thread to change and we obviously have lost some people. I just don't understand why they had to mess with things that work just fine. It would have been nice to feel like we mattered. Once again.
I'm here. Just taking one day at a time. Candy you're a sweetheart for caring about the thread. It means so much that you said you don't want it to go away I don't either. If it does. It wouldn't be my doing, Ive given my heart and everything I have to making it a safe space for people. So I will still be here. I will still post my ramblings. Who chooses to join me remains to be seen. Tag is hanging on by a thread and of course on my other puppers deeohgee. I found a very large lump on his hind leg. So just great! Wouldn't it be so my luck to have them go together. Geeze. It's a big lump. I'm thinking not a good thing. Been noticing some popping up here and there. Mostly recent. Appointment next week . But I am here! Runor. Hi honey. Philly, sweet friend. Awesome video! BooBoo, we all need breaks. I won't give up on the thread, if you all won't either ! ❤️🌹. Can't forget mara, she's been hanging in with us also. And Mae, Grannax. Love seeing her and her beautiful grandchildren. Makes my heart warm!
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Runor,
Wanted to respond to your post. I have always found it interesting (frustrating) that oncologist have little training in the mental health field. I would have thought they would be well versed in watching for signs of depression, etc. But the mental stuff is either passed on to someone else (psychiatrists, palliative care groups) or ignored. In my opinion, it should be integrated into our care like other services.
Anyway, I think I would punch someone in the face who even suggested that I was mentally ill because of this disease. I will admit I’ve had some pretty dark days when I could use some extra help, but to call it “mentally ill” is outrageous.
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My dear Mel,
No way am I giving up. This thread has been a life-line for me, and I hope you didn’t take my post above the wrong way. I am a person who feels deeply other’s pain, and to read that you are going to lose one of your furry babies is just so hard for me to bear. I feel like it’s one of my own. Love you girl. Hang in there
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I read every day and think of all of you every day, I get sad when I read that treatments don't work... and I'm happy when someone posts good news, but I am really clumsy to post in this thread, I don't know why... I just wanted to wish better days for all of you! ❤ 🌹
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BooBoo~You're such a sweet friend, I would never find my sisters words offensive. So no worries darling. I just don’t want everything I’ve worked for in two years, when other threads don’t even make it. I adore being here with you all, it helps me tremendously. I don’t know anyone in my everyday who fights what we fight. It sucks So my funks come And go. You’re all like precious flowers in a garden that I tend to, and water and make sure stay ok. Sounds odd perhaps. But it’s all I can do. I am sending you sweet hugs! Thank you
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Runor, I am so on board with the idea that reducing Stage IV cancer diagnosis down to depression and offering antidepressants as the only solution is ridiculous. Our cancer is no less stressful to our brain as PTSD is for other people. Whether it was early stage, a long time ago or being dealt with in the present, PTSD would be closer to what we are going through all the time.
I will say, I don't currently feel that bad about my own cancer, yes the incontinence sucks but it can be dealt with til I talk to MO. App't is next week anyway. I refuse antidepressants because I am sensitive to drowsiness inducing drugs and don't need to be stuck in bed. I simply walk on my treadmill until I feel better. That is the only thing that has really helped keep my sanity this past year. Also helped a lot with my own grief over losing Mom and my younger brother. I am actually no longer angry BUT there was still a grieving process losing him. In the end, I still feel we are both better off without each other and I wish nothing but good things for his family, my nephews and great nephew. It took a long time not to be emotional and he does come up in conversation for me, but that is usually if we remember something from a long time ago as kids. I was able to let go of his treatment of me and my mom because mom is gone. She doesn't care about the past and he is not able to hurt me now nor has he tried for a bit. I am out to look after myself and enjoy family I have left. Antidepressants would not have accomplished this for me. I had to come to these realizations, usually while walking. That is where a lot of my decisions and feelings come from since I have no one to talk to day to day. I will not burden my older brother and family as they need a break. They were busy with me for months. My walking as stated above has kept me sane. The crying all day cycles are much less frequent for me. Life is not easy, but no one ever promised me it would be easy. Antidepressants would not have fixed me and they should not minimize what we all go through.
Mel, I am sending all of my positive strength your way and to anyone who needs it. We all need to be able to have some light. Runor and everyone, I am always thinking of you all. I don't have children but I have a lot of love to give. I send my thoughts and strength for anyone who needs it.
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I’m here, mostly reading. I think it’s more of a funk going around instead of people leaving the thread but time will tell. I’m back at the gym this week and cooking (hello fresh dinner kits), here’s a pic of my favs.
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Still here...reading everyday. Hope this thread never goes away!
Prayers for blessings for all of you wonderful people!
Angie (Masonsmawmaw)
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I’m with Mae about the funk happening.
its a rainy day and I’m at the ob/gyn getting a much needed checkup - been waaaaaay too long. Got so concerned with boobs for a while there that the vag got totally ignored, medically speaking.
I am here thinking about how there are women in some states that are being denied women’s health and reproductive care. I feel incredibly lucky to be at the doctors right now.
My almost 4 year old nephew has developed a herpes outbreak HSV 1. Poor kiddo has been feeling super sick with high fever, inflamed gums, drooling and a big fever blister on his cheek. My heart breaks at the thought of him in pain and discomfort. The shit life serves us!! Bleh!!!
I am feeling incredibly lazy and haven’t made it to the gym since last Thursday. I did take a longish walk yesterday and had a massage and today the front of my legs, low back and hamstrings are aching like crazy. I feel like the massage therapist didn’t complete my massage or something or maybe there was energy left to move that didn’t get moved? She only worked on my low back, hamstrings and feet...but for some reason, probably time-related, neglected the rest of my body. Maybe it’s the meds I am on but it makes me cranky!!
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I’m still here!! Reading every day too but not posting much. I pray for all of us every day.. seems like the funk is going around. Having horrible nerve pain in my leg and back, pain is a 10 on the scale. Using a cane and hating every minute of it. Can’t get an appointment with pain management doctor until the 29th. Seems like all the doctors are booked up to 2 months in advance. I hate that, they tell you to come back in2 months and when you call for an appointment they are already booked. Only place I don’t have trouble with is my onc office. I’m finding this with my moms doctors too. Rant over!
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Ok, I think we can call this “Grand Funk Railroad”! Sorry....couldn’t resist!
Was just reminded about something I wanted to relay here. Since my onc’s practice does not have a palliative care group, I decided to look around and see if there are other facilities that could provide those services. I must be slow, as I’m sure this was discussed, but just about every hospice facility can help. I have 2 appointments set up so that I can start taking advantage of Reiki, massages, and pain management.
Lynnwood, I hope you can get pain help before the 29th. If there is anything I find disturbing, it’s a fellow MBC patient in pain. That is just not right. Can you call your onc’s office and get meds? I hope so.
Philly, thanks for the reminder about OBGYN. I need to do the same...
Love to all,
Laurie (aka Booboo)
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I was starting to think it was my showering habits keeping you all away. The funk!! Everyday you ladies help me get through the hours. I value each and everyone of you. Mae, as long as I have known you ive never heard you say you were in a funk. It has to be real! Love to all
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waving from the funk train
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