My Husband, My Life, My Love, My Family, My Cancer
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Lynwood, them are some spanky bones you got there! Excellent news.
Mar Eliz, it is very generous and kind of you to open up your home. I hope that someone can find a more permanent solution for this lady in the near future.
50's Girl, I hope the taxol is tolerable but boy, they could have picked a better name, Taxol? Sounds exhausting just saying it! Good luck
Micmel, I can imagine how upsetting this news is about your dad. No part of this is easy. I have no good words, just a big hug.
Usually this time of year we have lots of deep snow, but not this year. In three months the place will be on fire! This does not bode well for the upcoming heat. We need snow, not that it will be pleasant to live through it if it decides to come all at once. That's when trees drop over and crash the house and other objects. Stay well and batten down the hatches to all in a storm path.
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Parry you looked beautiful and your husband looked very handsome! i’m glad your weddings went well and that you felt good for them.
lynwood- congratulations on your scans!! may your treatment work for years to come. i’m on faslodex, xgeva, and ibrance and in september my scand were nead. my doctor told me that he will order my next scan for next month. the scanxiety hit as soon as he spit those words out.
micmel- it sounds like you have been feeling pretty good lately. i’m so glad. i was so worried.
50s- try to have a great vacation and not worry about anything.
it’s horrible to hear about lynns daughter. her family is in my pr
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Micmel, I'm very puzzled how they could leave your father alone for more than a very few minutes. I'll never understand that. A facility would be best so he isn't neglected but I know it would be hard on him to move. I hated to think of my dad in nursing homes for those last ten months. One was truly horrible but my sister moved him quickly out of there to a better place. I'd repeat to myself " he is warm, dry, safe, looked after" and it did help. It was hard accepting that I am physically incapable of doing much at all.
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Lynne, sounds like you’ve gotten some great tips and advice here from our friends about your next treatment. That’s why I love this thread so much! You always have a great attitude, not only about cancer but about life in general. I will be praying for you as you begin this next step. Micmel, it is absolutely shocking to me that your step monster left your father alone and then was unable to be reached by phone!!! I’m surprised the hospice did not turn her in for elder abuse. Excuse my frankness but as a nurse this is what we are looking at. I don’t even have the words to describe my feelings on this, only to say that I am so sorry that you have to deal with this information all while going through your own health issues. Hope everyone stays warm!! Micmel, what happened to the snow??? But lots of wind and cold air coming!! I’m in my pajamas and don’t have to leave the house until Friday so I’m staying in! Don’t want to catch the flu germs that are floating around.
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micel I remember all to well going through that with my dad. Looking back, sometimes it is better to let the system put their concerns in writing. That way it's not you being the bad guy. Your monster in law should get turned in. But, my dad was so miserable in assisted living and not safe there either. Assisted living does not mean full time care. On top of their enormous fees a caregiver has to be paid. It's a catch 22. I do feel your pain of being helpless. Another tangle in our web of MBC ripples.
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Micmel, sorry about your Dad. Step Monster lives up to her name!
Hope everyone is well, Has the storm passed yet? Stay safe and warm
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Minnie~ the storm fizzled for us, but it's now 19 low tonight of 5. Blankets anyone?
arrggghhhhh! I had a post and lost it! So annoying. I have been researching all day about private nursing costs for a half of a week of help. Full week is $800. Seriously. That's like wow! But the more I think about it. The more they deserve it. It's hard work. I mean infant crap is one thing. But a grown man who messed up himself. I'd start gagging and I'm not sure if I could even do it. It's really a shame. So then we figured we would have to take turns. Pay $300 and get a half of a week of help. We all split $300. If the stepmonster doesn't agree. I'm going to talk to the nurse. I'm starting to get really stressed out about this. I am already willing to give up a week of my medical medicine to get him a nurse. But I was the bad daughter. And I have stage four cancer. Wow some people are just plain heartless. My sister sent her a text... letting her know that the nurse called me. This was my stepmonsters response. “I AM AT FUCKING WORK AND I GAVE NO HELP". Meaning I have no help. Yah think ? Hag? If you didn't ruin every single relationship worth having for my father, I would have him living with me and I would be taking care of him already. But since they tried to sabotage my DH and my blended family. They chose the wrong team. None of that was my choice. All I wanted was a divorce. 😡 the entire thing is stressing me out. Her response baffles me. I would never talk about my sweet DH like that. I'd sell that damn house and move faster than you could say hospice. But nooooo for some reason she needs her 7 bedroom 3 bathroom house with a sunroom decorated to the nines. And a kitchen to kill for. The house is massive. And for what. To house a big family ? Oh wait you ruined the family and all the grandkids and great Grand kids don't want to be around you. Poppie yes. But not you. You wicked mean soul sucking ass.
Ok I'm done. Love you Minnie. 😃. Much love to all. ~M~
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I’m ready to quit
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Gracie~Oh sweetheart, I knew something didn’t feel right when I noticed you hadn’t been around. I think we all reach that point at times. My heart is aching to read that. I love you my friend. I am here. 💔
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Holmes~ How are you doing.? Hope you’re feeling better. I know you’re in the hospital. I’m thinking of you too!
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Gracie, thinking of you, your post tore at my heart. I so wish I could make you feel better! Sending you a big hug. We are here for you.
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Gracie, sending hugs your way.
Micmel, I saw this today and thought of you and dealing with that step person and all her crap. Sometimes you gotta hang tough
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Gracie, What is going on to make you feel that you are ready to quit? Is it because the SEs from your treatment are too severe to tolerate? If that is the reason, please talk to your MO to find out if there is something you can take to help to relieve those SEs. If there is nothing that he or she suggests, then ask to change to another treatment plan. I know it doesn’t always feel it, but we really do have the power to change our treatments. QOL is important to all of us, and when that is compromised, it is hard to deal with anything and everything. You deserve relief. Maybe a different treatment will be more tolerable. I realizethat only you know how you feel and what is going on in your life. Is there anything I can say or do to help? You are important to me, and I want you to feel better. I am lifting you up in prayer and hoping you find the strength to go on. God is by your side. Whatever you decide to do, I will be here to support you.
Hugs and prayers from, Lynne
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Gracie, I know your abraxane break is over, I’m guessing the restart has been tough. Perhaps it’s also difficult to be back home after a vacation, where if I recall correctly, you were feeling somewhat isolated. I understand how you’re feeling but wish it wasn’t so.
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Realizing over and over again that you're terminal happens to me sometimes. I have triggers that I see during my days. Some movies I watch that have happy endings, all I can think about is my ending, since obviously the beginning is clearly over.
I can't go back to the 80's when wang Chungs “dance hall days" played along with “melt with you". Symbolic to my youth and the freedom of a body that could run and a mind that could dream of a future.
Now I cry at the drop of a hat, cringe when I see cancer commercials, and my heart breaks over and over at the thought of leaving this place. This beautiful place with sounds of birds, and playing children, the sound of my sons contagious laughter, or my daughters shiny hair. My husbands sweet kisses, or the smell of a simple cup of coffee. The long talks with my step son and the sound of his voice changing as he grows. It's all different now because of the impending loss I feel. Day and night it's with me, gnawing at me like termites in wood enjoying their feasts. I can't even taste my food, I spend most of the time in bed with extreme fatigue, fear, grief, panic, and asense of surrealism that follows me everywhere I go.
I am stuck... I want to run. I want to hike... I want to travel with my sweet beautiful man to places that equal the beauty of our love together. It's not right. It makes me enraged. A trigger I have every single year, is the date
January 22,2016.... the day I knew I was no longer the woman I once was, and had no idea how bad it would really get. I was naieve in living. I didn't stop to smell the flowers and take in the real beauty that surrounds us all. That file opened that day and I was never the same. I live in a constant state of PTSD. The date is living proof. It's like swimming with one arm. It just can't happen, eventually I will drown. Cancer just shatters a persons life, future, past and present. It's a living hell.
I love you ladies. Thee next two days are going to be really hard on me. I want to run back and hide. I need a way back.........to me...to who I used to be..... oh god please.
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Micmel, your post tore at my heart also! I will also miss all of those things when I leave this Earth. But I can still enjoy them now, and so can you. The moments may be bittersweet but they can still bring joy. I always tell myself that I may be dying but I’m not dying today and today my life is filled with things and people that I love more then anything. I intend to enjoy whatever I can until I leave this Earth. Believe me, I have my moments and have just had a bad funk myself. My husband reminded me every day that I still have a lot of living to do and that for the most part I am fully functional. I cried a lot of tears during that time but was able to drag myself out of it... yes drag, because it was hard. I have no advice to help you because I feel like we all are different and what helped me may not help you. Just know that we are here for you, you are loved more then you know, and if I could take this awful feeling away for you, I would in a heartbeat. ❤️
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Micmel, your eloquent and absolutely understandable post of the pain of cancer, followed by Lynnwood's perfect post .... I am without words. I have sorrow for you and everyone who struggles as you do, and gratitude for Lynwood and those who have struggled to the place she is. We all cheer for each other, it's all we can do. I cheer for you now and for everyone here who moves forward under such oppressive knowledge, the knowledge that we are going to die one day and have been handed the reminder note. Anniversaries, reminders, triggers, all awful. I am mentally coming over to your house, helping myself to a cup of coffee, opening the package of cookies I brought and sitting with you. You don't even have to brush your hair, just show up and eat cookies with me, in glum silence. We are all here for you and each other.
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Thanks everyone. I’m not sleeping. It’s not the chemo, it’s this stupid port. That makes it even more frustrating. Last night I was taking Lortab every five hours because it hurt so much! It hurts up in my neck where it goes into the vein, and my position doesn’t make a difference, except when I lay on either side it hurts worse. So I’m back to sleeping flat on my back! It wouldn’t be so frustrating if it were the cancer. But this is voluntary and I’m ready for it to be gone. I have no idea how they would do weekly chemo without it. I’m having se’s from chemo too, and it’s aggravating my colitis, so that’s flaring! It’s just building up. A perfect storm. Appt. With onc on Friday. I know he’s going to say I have to have a port...
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Gracie, sending hugs. We all love you, and understand x
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Gracie, I do not yet have a port, but because I will be getting one very soon, I have done a lot of reading about them. It is not normal to have so much pain for this long. Please be sure to tell your MO about it on Friday. I hope something can be done to alleviate the pain so you can sleep. Being tired makes it difficult to cope even on good days, so in your case, you must feel miserable at times. Do you think that your gastroenterologist could help with the colitis flare? You seem to be in the midst of a perfect storm - pain from port, lack of sleep, SEs from chemo, and colitis acting up. No wonder you feel like giving up. I truly hope that you get the attention you deserve as well as some helpful advice, answers, and relief during your appointment.
Hugs and prayers from, Lynne
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Gracie, like 50’s said, this port pain is not normal. Please tell someone ASAP and get it x-rayed, aside from the first week after surgery, you shouldn’t have any real discomfort and absolutely no pain.
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Micmel. Micmel, do this. Read your post above as if I'd written it. Believe me, I could have. Every word and my "date" is January also. But anyway, what would you tell me in your kindness and compassion?
I'm going to try and respond. First , breathe and relax your shoulders. The blow we all expect to fall isn't coming today. You are safe and loved. Right now, this moment. We have gotten a bad hand. No question. Lots of dreams are gone now. But. But. We are still here, you and I. On our good days, we can do some things. Not like when we were well, but we can. And here's the thing. If we had remained healthy, this lack of strength and sadness over what might have been would have come to us anyway. We don't have to like it that we get the setback early. I absolutely hate it. I have times when I don't want to get up. What's the point, right? Well, the point is that we still have free will. I can choose to be content, and sometimes happy. Not all the time. No. I have gray days. Black, dark days. But I try to stay busy and keep myself distracted. I'm not ignoring the sword hanging over my head but I don't look at it all the time. I read. A lot! I read mysteries from the golden age of British mysteries and sci fi set in the future and lose myself. I don't notice my pain as much and I forget that I can no longer drive and all the other things I can't do. I cook a little and do small chores so I feel like I still contribute something to the household. When I get really trapped in despair, I pray. Mostly for other people but sometimes for me. I play a couple of silly games on the tablet and have a lot of fun. It is hardest when we think of the kids. But they will be all right. Humans are very resilient. You are too. You are needed and respected here and make a difference. Find someone you trust and tell them why you want to sleep all the time (the part beyond the fatigue of Ibrance which is a real thing). Get to the bottom of it. If our time is limited, use it for what you deep-down want to do. Don't let the bastard cancer rob you from yourself. You set those rules.
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Gracie, you do not know me but I echo what your BC sisters here say. So many of them have been there I feel.
Micmel, I have been thinking about you and your father and the wicked monster. I had a wicked stepmother and though I have not seen her for years (my father died very young at 72 from lung cancer) at times I still feel so sad at the way she treated especially my younger siblings who had to live with her for a long time. It is amazing how frighteningly selfish this woman is. And she tears at your heart which really upsets me. Where do you live? If not too far, I would arrive bringing both of us good coffee.
Gracie I am reading back and over so that I can remember each comment and try to respond as best I can. I had a port six years ago and was sad to see it go but I did not know I would have another one years down the road. I am lucky in that I have not had any problems but I have met two people recently who are having there is redone so I hope that you could ask your MO to refer you to get a new one. I had to bowel obstructions in 1998 and 2000 and it was in hospital both times for more than two weeks each. My veins were blown because I was refused a port so it is very difficult now to get a vein for anything. Keep us posted and I hope that this resolves.
BTW, the woman who my husband and I helped last week seems to have a habit of misleading people as she is now doing to another woman in our YMCA group. I am very lucky in that the woman in charge of the program as well as a counselor at our cancer agency advised me well and said I have to take care of myself first given my metastatic cancer. We did give her a week of good food and comfort along with her three pets. I have no regrets but I will be much more careful next time.
Muddling, you mention the kids that some of us have. When I am really down I think of them and especially my youngest who is almost finished nursing school. I have been with him so many times when he has had hard times but I now trust him to grieve along with my other two and my husband. He wants to do a palliative care course for when it is needed. I thought he meant that he wanted to do palliative care as a nurse LOL but no he wants to do it for me and he wants his siblings to do it to. How good is that? Right now I'm having an up time and though I do not know why I hope it lasts.
Love to all of you tonight,
Marian
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Thanks to everyone. I do have an appointment with my onc on Friday so will see what he says. My CEA has jumped from 2.4 to 7.....Am wondering if this chemo is failing!
Also, the port isn't blocked at all, they get great blood flow from it, and they checked it a few months ago with dye and it looked grrat, and my PET last month showed as where it was supposed to be. It's a mystery.
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Wow...reading back it’s crazy to see what all of you/us are going through. BC is like a whirlwind sometimes. While there is so much to comment on with everyone here there is a theme I see.
This community and thread continues to overwhelm me with how loving and beautiful you all are, even in your darkest hours, yet at your lowest you still have this strength and light that I find such a connection with and inspires me to fight alongside you.
Thank you all for the beautiful comments about the wedding pictures. It was 10 years in the making and 1 year ago I wasn’t sure if I would live to see that day. God truly blessed me in my life partner and wedding week. I felt so good it was strange. I didn’t need a nap and pain was kept at bay with Tylenol, of all things! Day after we get back I have a chest cold and vision is getting worse so time for another brain MRI. Already have CT body scans next week to see if Halaven is working.
Love you all & praying for strength and comfort for everyone no matter what you are going through. Hang in there team!
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Parry, you were a truly beautiful bride! Thanks for sharing your pics! You happiness just radiates from you!!!
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Parry~Hello our beautiful worldly bride. Saying beautiful doesn't really even cut it. Sometimes words cannot express true beauty. Am with you in your pocket for the scans. Oh yes I am.
Sometimes words cannot express anything. Anything at all. Words can not take away our diseases and fears of loss and death. Fears of constant scanning and shots and injections or infusions. Our dictionary has changed drastically. We are bees inside a jar, the jar is tight and we need air. Fresh pure worry free air where we fly and sting the mother fuc*er who made cancer what it is. We love, we live hour to hour. I wait for the sun to set because then I can sleep again peacefully from knowing the cells are at battle in my body, after fighting for three solid years with all of my might. I am tired... so so tired.
I am deeply in love with my DH. My heart shatters beyond mere pieces, it shrinks up like a sun burnt raisin with no moisture.. or a sponge dried up under a hot light for warming. He breathes moisture into me so I can fight another day, and maybe even smile when he does something silly only to make me laugh. He says “I am ok as long as I have you, and I don't want to think of a time when I don't"
Living with MBC isn't living. There is nothing normal or new about this way of life. Start telling us the truth on commercials. “Yournew normal is going to suck royal ass". You may feel good two days a month if you're lucky. You may die in a month after a clean remission scan. It is a freaking crap shoot. Nothing good nothing has come out of my cancer. Nothing. I am an emotional mess part of the month... throw in the mention of my dying father. Or a scan and 💥 I'm gone. That's how I feel. I feel Every time a special occasion comes along, I have to stop and file every thought for the fear of not being around for the next Christmas or the next birthday. Or wedding. It's a living hell. That is what they need to be saying to us. Not showing us smiling women in caps sporting a thumbs up for a photo opportunity. They don't show when she goes home and cry's alone in bed for hours on end terrified of what their own body is doing to them as they live each day. Cancer is awful.
C=can't do a damn thing about it
A=asshole huge and hairy
N=never ending misery
C=can never be the same again
E=everyone is at risk.It doesnot care who you r
R=reoccurrence is always hanging over us
There is the break down simple and easy. That is what they should say. Because it's the truth. Everyday is hard. This I am now sure of. You ladies are freaking strong ass warriors. Do NOT let anyone tell you differently. Amazing team. FU CANCER!!! Today is three years since diagnosis denovo. Gonna be a rough one I can tell. im putting on my best cancer face today.
Love you ladies. ~M~
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I agree with the inaccurate portrayal. The person they show I have not met or seen yet. Even before stage 4. My partner also gives me the strength to keep fighting. I’m tired of being in pain, but for him I have twice as much strength. I do also want quality time for what’s left of it so I’ve tried to accept my new normal, cancer normal, finding it easier to not fight this new way of life. Sometimes I think of it like someone who has lost an arm or eyesight. They have to relearn how to live and find a place that is their normal. If they can do it so can we, right? Although we may have most of our physical parts we’ve lost the, albeit false, sense of security that we will live to the average lifespan around 80. Instead of planning for retirement we plan for the eventual hospice. Cancer is my amputated arm, but it doesn’t mean I can learn to use what I do have left and I hope other can as well.
Micmel your ‘A’ in cancer had me cracking up in the infusion waiting room. The stares were worth it!
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Micmel, thinking of you today.
Go to this thread then scroll down to about the fourth post. It's by dlb823 and in her post is an image about "Conditional Survival" that you and all of us will find interesting .
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Hi Ladies like you all, I wake up every day , and every day you remember what it is to have stage iv cancer. The fear of what is ahead. For a long time I think I spent too much time brooding over what is in the future rather than living in the present. Yes, I have a disability, and that disability is cancer, but I will not let it suck what life I have out of me. I am determined to make the best of my life, for me, my husband and my family. Tomorrow I am 61, another year older, and I know a lot older than many of you. Make the most of your life. X
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