Bone Mets Thread
Comments
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Patti, you are a great inspiration to me. I hope that you have the best QOL in 2017. Keep going and keep us posted.
Lita, I'm very sorry for your family situation, that is really awful. We live in such a sick world with so much violence. I hope your cousin recovers to the extent that she can function and have some of the scars go away.
Jen and Dee, congrats on good scans!! You can both gain a little relief for a while.
Wendy3, you look like you are having a great time!! Enjoy every minute of the beauty and warmth of a little part of paradise! Have fun!
To everyone else, hope you are feeling good, thanks again for this thread, I think of everyone of you every day as we fight MBC.
((Hugs))
Anita
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Lita, I'm so sorry about your cousin. What a devastating experience. Oh my... I hope and pray she can heal, both physically and emotionally. I'm so sorry.
Wendy, your vacation spot looks and sounds heavenly. Thanks for sharing the photo and your raccoon story, which made me smile because I think we've all done that -- challenged God to show Himself to us. Several years ago, my hubby and I had spent a very wet week in Victoria BC. The day we were to leave, the sky was so dark it made the day seem like night, and the rain was coming down in torrents. It was just a few weeks after 9/11, and while I have always believed in God, 9/11 truly rocked my faith. So there we were -- sitting in the tiny airport at Victoria, waiting for the weather to break enough to let our flight out -- and I silently challenged God that if he was really there and still in charge, I wanted to see a rainbow, which I figured was next to impossible given how socked in everything was. A few minutes later the rain let up enough that we could grab umbrellas and make a dash for the plane, and as we started lifting off, I looked back over my left shoulder out the window and there was the hugest, most beautiful, brilliant rainbow over the airport.
And thanks for the update on Chelle. I remember she had her hands full with family stuff while building that new house. I hope they got moved in before the recent snows.
Barbara, glad you checked in! Enjoy Squaw Creek! Sounds like a great place to be for a week!
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Thank you for sharing that, Deanna!
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I have loved reading the stories Deanna and Wendy. Makes me smile!
I'm so sorry Lita, that is so horrible! Prayers for your family.
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Patti- I am so glad you have control of your life and death. Ever since my original diagnosis, and double-speed since getting MBC, I've gone hog-wild and feel I've already had a full wonderful life, even if I died today.
One thing I wonder about, in death, is the experience of losing the nerves that function to create our sense of 'boundary' with the world. I never knew these nerves existed, but of course it makes sense they are there, and I learned about it in the book, My Stroke of Insight, by Jill Taylor. She was a neuroanatomist who as a young woman had a stroke when she was alone in her apartment. She could tell what was happening to her, but the loss of that self 'boundary' gave her such a profound and deeply satisfying sense of her body merging with the universe, which was so peaceful and compelling that it was very hard to pull herself out and focus instead on getting to a phone to save herself. A fascinating story...
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Glad to see people on vacations, enjoying life and getting good scan results!
Lita, I am so sorry to hear this awful news. I have no words....
Letmywifelive, I am sending positive thoughts your way, good luck at the doctors.
Patti thank you for being so honest and informative. You seem to bring such a positive light to a seemingly dark topic.
For myself, I am all set to have my hyst/ oophorectomy surgery next week. Feeling a little uneasy about it. The surgery will force menopause and expand my treatment options which is good. But it just feels like a loss, because my husband and I wanted more children. I know many of you have been through this but it still sucks!
Best of luck to all that have upcoming scans.
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Is there a discussion board on mbc that helps us help our spouses? My dh HATES winter and we have often spent Jan-March in Florida. And this year we did get November in Destin FL. But it's turned cold and a little snowy here. Because of my progression, rads and treatment change we are trapped. He's fallen into a real depression. It has pulled me down with him, since it is obviously my fault. (Out of my control-as is the weather- but still my fault). How do I support him? We do something fun locally-see a movie, visit family etc and he's ok for a day- then, BOOM, back to the blues. I've suggested counseling, but that went nowhere. It's a cycle, he's sad, which makes me sad, which makes him sadder.
I looked through the boards and saw something about families, but it seemed to deal most with children. Suggestions?
Thanks for being the people who understand.
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Kaption,
I have severe SAD, as does my kid. Why we continue to live in upstate NY is a long story.
Anyway, to beat it back we have a big ol' light box in the main room of the house, where he and I eat and have the computers. When we come downstairs for the day, we turn it on for at least an hour. If the day is grey and overcast, we leave it on. It has helped a lot.
Also, at least thirty minutes a day, we get exercise outside. It is usually a walk. If it is under 20 degrees, we have a treadmill inside, but outside fresh air and UV are better.
Keep your sleep/wake cycle consistent. Try to be awake during daylight hours.
DS tried an SSRI for about a year, but he didn't get a whole lot of traction from it. He takes a magnesium supplement that seems to help.
Could we start a forum for spouses only? I know we have a caregiver forum, but my husband isn't my caregiver. But, it might be good for him to connect with other life partners to belly ache about stupid cancer, or to share how to deal with a spouse who hasn't left the sofa in days, etc.
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Kapiton, I am one of the spouses here and also the caregiver. I feel proud to stand by my life partner at this time of need.
I don't mind joining a spouses forum as well and probably help out some of them in need for counseling or get advise from them.
So I can start one if that helps.
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Thank you both! I'd Ike my DH to have a light. Don't think I could get him to walk outside. He is good about getting out of the house each day.
Letmywifelive, it would be wonderful if you would start a thread! You have a unique perspective.
I want to stress that DH has been an amazing nurse and partner the last 3 years. He's done stuff no spouse should have to do. An added stress this year is that his daughter moved out of town for the first time ever. My DD is here and we have 4 older grandkids here, but having his daughter leave was very tough.
Yes, let's have a place to talk about spouses/ partners and their stress!
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So sorry about your DH's depression, Kaption, but good for you for recognizing it and reaching out. It's ironic, but I was having similar thoughts this a.m., although we're very fortunate (at least at this time of year) to live in the desert. That said, the only thing I want to throw out to you and everyone at the moment is to be careful about anything you post on BCO, whether here or on a new thread, because this is an open site, and anyone can land on these pages via a search word or two. And even though identities can be hidden, it's still not a private forum.
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LMWL - email the moderators with the idea. The term Caregiver eliminates a lot of people who love and/or depend on their MBC friends, family but don't actually take care of them. Maybe that forum needs to be renamed to be broader and revitalized. As a forum just for caregivers it is not super active so broadening it will help that issue. I've pointed out to the moderators that's why we get caregivers and family here in the MBC forum and that's fine with me. However, they probably have a need for their own community.
You are awesome by the way. I can see why your wife doesn't need us because she has you.
Kaption - I have SAD. The good news is that these couple weeks after xmas are the worst. The holiday energy disappears and the days are still short. I walk and generally get outside as much as I can. Takes some effort with the cold but my family enjoys skiing, so that is where we are headed in a few minutes.
lalady - Thank you for your admonition. I organize my pills into a system so I know what to take every day, and somehow I just didn't believe it was correct, but it was. Oy. I just did a 2 mile walk to keep moving the crud along. Helps but still feel like crap. Scalp super painful and tingly.
One more rad to go and it is over and you can pickle yourself in Vitamin C. Let us know how it goes.
>Z<
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I have been struggling with SAD (Seasonal Affective Disorder) for years. Although I live in North California, it's still pretty tough in the winter for me. I agree with what others have posted: get your sleep, get some exercise when you can, and get a lamp if you need to.
A spouse forum would be nice
.Lita
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Thank you all. DH is feeling better after a nice dinner with our grown grandkids! Family helps!
A spouse thread would be helpful.
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Kaption - I am so glad that that your family improves your mood. Outside of my dear, awesome nuclear family (DH, DS1, DS2) the shortest route to a foul mood for me is dinner with relatives. Just sayin' you are fortunate in that regard ...
>Z<
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I have struggled with depression for years. Mine isn't seasonal though, it's just depression. As I said in an earlier post, I also have severe anxiety and panic attacks too. I've gone to a therapist for them since before I got breast cancer the first time. She helps alot. I've often wondered as I'm learning more about breast cancer and cancer in general, how much my depression and anxiety have played a part in my getting cancer.
Kaption, so glad your family helps you feel better. Such a lifeline there. Since I've lost Tom, I've really struggled with depression. My daughter moved far away two years ago, and that was difficult, we were very, very close. My son and his wife and kids still live here and I can spend time with them and feel better. That's a great blessing for you!
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Sorry Kaption...meant your husband...this voice recognition thing is horrid!
Tests starting today..
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Prayers for your day of tests, Gracie.
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Hi ladies;
Wendy where are you in Costa Rica
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Hey haven't stopped by lately, but thought I would stop by and say Hi.... Will start next round of Afinitor next week, this will be #3, so we will scan next month sometime, hopefully we got the profession under control. We pulled Emma off her chemo, her quality of life was really low, so we are back in watch and wait with her.
We just got back from our first adult only vacation in 21 years, flew into Fort Lauderdale and went to Keys for a few days, nothing like a mass shooting at the airport you flew into a few days earlier to make you realize no one knows..... Luckily we were on way to Keys not at airport but our phones blew up quickly..Just sharing a beachy picture
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Hey Keetmon, nice of you to pop in, glad to hear from you. Well deserved break after all those years! Wishing you and Emma the very best.
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Amie, I'm so glad you got away and the photo of the gull is simply beautiful. I love walking the beaches at the Keys.
Welcome back to more snow! Hope Afinitor keeps the cancer at bay.
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Thanks, Kaption. Todays appointment went ok. Tomorrow is the day that is worrying me. I've been having quite a bit of pain in my left hip again, especially bad today and yesterday and it's got me worried.
Keetmom, the Keys are on my bucket list, would love to go there someday. Beautiful picture! Thank you so much for sharing.
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Hi ladies! I got the wonderful news this past week that I am now NED from the neck down (I have some pesky brain mets we are working on). I was diagnosed with bone and lung mets last April, and at that time and throughout chemo, I was basically pain free. However, now I suddenly have pain where the tumors were. Now that they are "gone" I have pain. Has anyone else experienced that?
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nik! Great news! I can't speak to the pain but I know one of the other ladies will. Happy to hear your news
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Just checking in to say hello and I think of you all often. Thank you for being such an incredible support.
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OK just got out of the oncologist office of course I don't know what any of the scans are or read but I did get a good look at my bone scan physically looked at it wow I lit up like a Christmas tree ! So tell me this do those spots that were already there or are healing still show up on a bone scan because it look like there was an awful lot of stuff all up and down my spine and it look like the one on my skull was much bigger
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sorry about the grammar but I'm in my car on the voice command thing !
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Hello, I just wanted to update about my trial. I had the first infusion yesterday. It was a long day. I was there for 11 hours as I had to have ekg's and lots of labs drawn throughout the day. The infusion is a 1/2 hour and I didn't have too many negative feelings. I took my femara and ibrance at the beginning of the treatment. About an hour after it was finished my lips felt a little funny but that didn't last long. Then my eyes felt strange like I couldn't focus well but again that didn't last long either. I had very little nausea. My throat has been a little sore when I eat and swallow. I'm a little tired but not bad. I went to work today and was ok! Fingers crossed that I don't have any other negative side effects!
Misty
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Gracie,
I light up like a Christmas tree too. Did your MO give you any details?
Misty- that was quite a day! I go for some scans for my trial tomorrow- but nothing like that. I'm really doubtful that I'll be included, but they wanted to proceed. Good luck to you!
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