Bone Mets Thread
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Lynne, I'm so sorry you're feeling down today and I truly understand how you feel. Yes losing Diana and Nancy so close has hit me hard as well. We have to draw from all they taught us in how to live with cancer, as they were both relentless in living each day to the fullest. I loved when Diana used to write "not today cancer, nope". They will never be forgotten for all the encouragement they gave to others. Lynne, you are definitely a giver and I know you've helped many on these boards. You are often the first to come to offer advice and compassion to newcomers, I for one appreciate you.
Hugs, Annie
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Hi ladies,
Back to work. I took Thursday off for the biopsy and Friday off to recover and then had the weekend. It's been hectic coming back to work and I don't know if I like it or can stand for it plus I'm working late today.
Dee- ((hugs)) on the progression but I'm hoping the MRI and full body PET will give answers.
I'm not feeling optimistic about things today. Work is too overwhelming for me and I just keep thinking this isn't good for me. The doctor who did my biopsy said there were a lot of tumors in my liver and the pain is from the tumors pushing on the liver capsule, she said she counted at least 6 tumors but she wasn't really counting. She was only there to get the biopsy. Online, it shows the results due June 2nd. I want to get started on treatment- thinking Xeloda- sooner. I'm hoping that if it works, then these tumors might shrink a little and I might feel a little better.
Also, if I honestly don't have much time left, I don't want to spend it here at work!!!! Ugh!!!
Wendy- good luck Thursday!!
Sorry if I haven't responded to everyone- this new news about the liver is still getting to me and overwhelming me, but I did check out the liver mets board and some of the women there are still working w liver mets, so I need to try to calm down and settle in a little with the idea.
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Lynne, it's so hard and heartbreaking to lose our sisters. We get to know them, bond with them and love them. It's a constant grieving process. They continue to live in our hearts. You are very much a giver on these boards, with words of wisdom and comfort. We have to give and take to go through this journey. Gentle hugs to you.
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Last week was so hard with losses here and within other small MBC groups that I'm sure many of us are a part of on Facebook. There was a moment last week when I thought that one day I will be one of them. I'm so new on this path that frankly I haven't thought about my end yet (at least not since the initial Days after dx when I was so freaked out).
I don't know how to process these sad moments. Recognition of their lives (even when undone know them) and denial have been my coping mechanisms so far. Not sure those will help me in the long run though.
Even when I don't post, I do hold you all in my heart each day and think of those having hard times and celebrate those with good news
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Lynne, your feelings are understandable. Sometimes I get like that, too. It is unfair these two ladies are gone too soon. Your post mentions how they both lived and laughed and loved to the fullest with the time they had, so may that be of comfort to you.
Cjanet, can you call your doctor and see if you can get results sooner? June 2nd seems like a while to wait. You can convey your concerns and fears to the doctor. That may help in getting results sooner. I am sorry you are feeling overwhelmed and can understand why. Many hugs and prayers foryou.
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Jen, I don't think we have to spend too much time thinking of our ending if we can cope a day at a time and keep moving forward living a reasonably okay life. At times when I am sad about losses of friends here on this forum, I spend some quiet time by myself, take a walk if I can and sometimes I light a candle and let it burn during the day. As hard as it is to lose members, I know that many who are gone were able to spend the time they had since their bc diagnosis finding deeper meaning to their lives and living its fullness and that helps, althoughyes, they are gone too soon.
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Divine Ms. M beautiful words. Thanks
Christine I hold you in my thoughts in this difficult time.hugs to you.
Lynne you have given so much to me. Your support, and kindness have helped me in my dark days. I offer you thoughts of peace and cyber hugs today.
Jensgotthis I go back and forth in regards to thinking about the end. I like to plan and have a list for my dh for when I die. I want to have a good life and a good death so thinking about death does help me. But I try to make that part of my life and not get in the way of my life. There is a film called A Woman Like Me by a woman with metastatic breast cancer that was a help to me. But fair warning the woman who made the film did die too soon of this stupid disease.
Thinking of everyone including Carol who I have not seen in a while, Dee who I hope gets good news soon, Patty to if you are reading, and everyone else.
Peace
Mary
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DivineMrsM,
What a peaceful and meaningful way to honor those from BCO, our friends, gone too soon. I've struggled with hearing of another loss, writing words of condolence but then what...as soon as I step away from my computer the moment is gone but the loss and pain remain. Burning a candle will help to honor and remember them a bit longer.
As always you know exactly the right words to heal us. I think you could have been a minister tending your flock.
Thank you
Amy
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Divine Ms M, thank you so much. That's a beautiful way to honor our friends and a good perspective on handling the losses. Cancer and all of you are teaching me so much
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Dee I'm hoping you get some good news after all you've been through.
Lynne you have been there for me personally on many occasions and I can't tell you how much it is appreciated. You give so much don't ever doubt how much you help. This is such an awful disease makes me so angry.
Love you all
Wendy
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Christina, ask the human resources people at your workplace to find out if you could be benefited from any short term and long term disability policies which are offered at many workplaces for those employees who become seriously ill during their contracted work tenure with full pay. If you do, you might want to use the short term first, and then the long term. This could cover a couple of years. After using up the work covered benefits, you could choose either go back to work full time or moving to social security disability. You have options, try to not be stressed too much by the situation you found yourself in. Hugs...
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Dee and Cristina, Linda and Lynne, Patty and Babs, Jen and Rachel, Amy, Divine, Annie, Wendy and Xavo, MomATT, Chelle, Bosco, Mary, Lalady...and those I've missed,
Thinking of Nancy and Diana and all those who have gone on ahead recently...what a gift they were to this "Club." Such a loss to friends and families...I'll miss seeing "Not today Cancer...Nope" on the board...that one really resonated.
Sending hugs to those experiencing new symptoms and SEs, waiting for test results and facing new challenges...some days it feels less like a battle and more like being surrounded by snipers. You all have my utmost respect and thanks for your posts and encouragement! This really is the ONLY place I can freely talk about what is going on.
Thank goodness for spring! My yard will be turning into a farm within weeks :-) Looking forward to the fragrant blooms on roses in June. Plus, the dirt covers my nails so I can't see the telltale ridges at least part of the day! Volunteer work is helping keep my mind occupied some of the time.
Visited CO last week to see DD2 and attended a yoga class with her. Nearly requested a wheelchair on the way home two days later. Lower back pain all night, shooting pain in back of leg and wobbly knee, etc. Same thing happened when walking for exercise. Called my Onc and now we have early scans scheduled for June. #&*)$^ cancer. It's only been seven months since initial stage IV dx. So not ready for progression.
If it's mets to the sacrum...is there a good solution to keep yourself functioning with this kind of development? yeah yeah...visiting with Dr. Google again.On the other hand...I can go the denial route for the next two weeks and blame the yoga....yeah...that's what I'll do.
Hope it is warm and sunny where you are!
K
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Kathryn, DeNile is a nice route to take when you're not ready to face a new challenge. Nothing wrong with that. In the mean time I'll pray it's NOT progression and maybe you just over did it a little. Take care of yourself and rest.
Aurora
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Kathryn, floating on DeNile is very good once in a while. Don't let your mind go to dark places, trying some new exercises can certainly trigger pain. Been there! I for one have mets to sacrum, never had rads there and bothers me only when I overdo it. I did yoga for years, don't underestimate the strain it puts on our muscles and body.
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Thank you Aurora and Linda!
DeNile it is! Good to know that these mets can be manageable...
Onward and upward!
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Iwrite your post made me laugh, shit I have been living on the lovely island of denial for about two months and it's great. No pain I am a normal human being with a future best place to be till the onc calls....
I'm feeling terrible could you tell me the other name of Nancy and Diana their handle on the thread I suck at names so bad lately . Terrible to always be loosing our sisters . I hope they are somewhere better.
Wendy
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Wendy, Nancy was Nancyh and Diana was Diana50. They didn't post to the bone mets thread, but I read their posts on other threads.
Kathryn, I am all for DeNile, too. It is so comfortable there. I hope your pain subsides soon and that the scans show stable or healing. I was thinking about going to a yoga class because I thought it might increase my flexibility, but now I am reconsidering. What will you grow in your farm(yard)? I have two perennial gardens, and I have a some vegetables that I am planting this week. So far, most of the flowering plants have only leaves, no flowers. I do have strawberries beginning to form in the strawberry patch. I have annual races with squirrels and chipmunks to see which of us will get to the ripe strawberries first. I usually lose.
Mary, I have noticed Carol's absence as well. I hope she is just busy having fun.
Still no word from Myra?
Lynne
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Wendy,
I think their handles are Nancyh and Diana50. Someone please correct this if I'm mistaken. I've been here since November and they were always so supportive of the folks on these threads...I know they helped talk me off the ledge on more than one occasion.
I'm counting on these friends being at peace and free of fear.
The yoga DOES help. I feel great after class. It's the next day that is painful. This is a new thing and I'm not a fan. It may be time to try swimming to avoid the hip motions...
I staged a coup and took over the gardens from my DH since I'm not working. I planted potatoes and onions today and have brussel sprouts, broccoli, red cabbage, kale, spinach and tomatoes along with a variety of herbs in the border gardens around the house. DH had removed some plants he didn't like so I filled the space with veggies. I've already been able to use the basil and rosemary and kale. (I know it looks like I've been reading the anti cancer cookbooks!) My roses were bare root from Jackson Perkins so it will take a while for those to leaf out and bloom. The irises have been spectacular this year and the world looks friendlier when everything is finally green!
Denial is officially my summer destination :-)
Have a good night's sleep!
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Lynne and all...last time I heard from Myra it was Jan 30. I pm'd her again and will let you know if I hear from her. Keep us posted about your kidney.
Terre are you out there?
Love to hear about the gardening from many of you.
Anyone know the recipe or RX for magic mouthwash?
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for mouthwash I use 8 ounces of water with half teaspoon of baking soda and half teaspoon of salt. Does anyone have a different recipe
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In deFense of deNile:
I have actually been accused of denial by more than one person. Is it denial to want to live ones life as fully as possible despite MBC? Is it denial to plan for the future (or plant all of those great veggies?). I think not! We have MBC, no deNile there, but we don't have to hand over our lives, lock, stock and barrel. If that's deNile, I'm all for it 😀
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Hi All
So sorry to hear of our dear sisters who recently passed-it's a reminder of how finite our lives can be with this stupid disease. It also makes me want to enjoy what time I have on this earth to the fullest.
This past weekend we went to my DH's college roommates daughter's wedding. DH and I love to dance and so we did-a lot. I even wore regular shoes so I could look like the "normal" me. Sunday my son brought our 2 granddaughter's over for our first visit in 3 1/2 mos. Well, I did pay the price! I woke up Monday with so much pain that I thought I might have broken another bone in my chest. After work I went to the Urgent Cre Center and 4 1/2 hrs later I found out it was a pulled muscle ! Even though I'm in pain, it was so worth it. We need the few times we can to be "normal" again. So, everyone pick something that is your happy normal and do it and say thank you to Nancy and Diana for making you realize that you needed to do it!
Babs
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Babs
You are heroic. I love your story of embracing life!
Mary
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Hi all!
It's been a very hectic few days with all the traveling for treatment, scans etc. The preliminary results of the brain MRI are strange. I've been told that I have a met in the ocular something which is what they thought was giving me headaches with the smoke smell. Turns out I don't have a skull met at all!! It damage from a car accident that I had 35 years ago. Radiologist says it's not changed at all since he first saw it in 2009.
I got a cancellation appt for full body CT scan first thing tomorrow morning & I should get my TM results by tomorrow afternoon. After my CT, I am taking my poor DH out for lunch for birthday week. He's been my rock this week and he deserves it.
Kathryn, I have mets to my sacrum & had it radiated. It helped a little bit, but RO told me it was really had to get at.
Babs, sound like you had fun, well not the pain part, but we all need to get out there & have some fun.
Hello to everyone else, I'm too exhausted tonight to go back & read. I will try to catch up later in the week.
Thank you everyone for all your support. Don't know where I'd be without being able to come here. I'll keep you posted, cheers, dee
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Dee, what an wonder piece of news about your brain MRI (phew !!). Hoping for more good news to come.
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I am so sorry for those with bad news and so happy for those with good news. We live on a rollercoaster and it just sucks sometimes.
I was blessed with a granddaughter this week. She is just perfect (of course I think so lol)
I also went to Houston to MD Anderson. The MO there and my MO have completely different opinions on the Xgeva past 2 years of tx. MD Anderson said get back on immediately monthly. My home MO who was so against it said he would agree to every 3 months after the suggestion and opinion of MD Anderson. SIGH......
Prayers for all!
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Christina, Xavo had good advice about going to HR. They will be able to help you sort it all out and discuss disability with you.
Dixiebell, Congratulations on the birth of your granddaughter! It's hard when different centers offer different opinions but good that your MO is at least back on board with Xgeva.
Dee, Good news that your brain MRI is clear. What a relief. Will be thinking of you as you go forward with your CT.
Letmywife, How is your wife doing and how are you doing?
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Good morning all,
Dee - what a relief! Wishing you good results with your CT and enjoy lunch with your rock!
Dixie - Congratulations! Can we expect some pictures? Every 3 months seems reasonable.
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Morning ladies,
Well thank bloody goodness for that Dee ..whew..now I want you to really enjoy yourself for your lunch . You deserve it I can't imagine the roller coaster ride this past two weeks have been for you. I'll be thinking of you with your CT scan results I have mine Thursday ...
Dixie a baby girl how wonderful you must be so happy. I agree with Linda pics please.
Wendy
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Lindalou, thanks for asking. My wife is doing well. She is able to perform regular day to day functions like any other person and going through her Ibrance regime. Her white count remains quite low due to Ibrance but she is able to continue at least for 2 weeks at a stretch. Scans coming up in less than a month.
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