Bone Mets Thread
Comments
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Mallory!!! How beautiful is she? I'm sure you can't wait until October, Myra. What a lovely granddaughter.
Rachel - I have the pin in the fractured femur too. Yes, it hurt, but once the incisions healed, there was less pain than before surgery. Physical therapy is key once you heal a bit. And it does get better.
Lana - sending huge prayers your way. Awful about them fighting to get the needle in; that's just misery compounding an already crap situation.
HFC - sorry your DH is saying stupid things. Same to others who have the same lack of support at home. Certainly empathise with you. Cuculi and NY - same goes...and I think Deanna is probably right. It comes from fear and not being in control of things. My husband's response to my cancer? "Shit happens". Geeze. That's supportive - not! That said, he doesn't let me wallow in self pity for long. But he really doesn't get it that some days, I just hurt. And I'm just tired. Oh well. At least he's a good cook.
LindaE & Bosco - here's to you two getting well soon! I'm hoping it's like the nasty strep throat/ear thing I had earlier this year; took forever to quit coughing and my ears still aren't quite right. Four rounds of different antibiotics to get rid of it. But better than progression. That said, we really should get a pass on the flu/colds/etc. Linda - sending good wishes for clear scans.
Deanna - you're always so wise and zen. I want to be like you if I ever grow up.
Sending hugs to all...hoping treatments and scans go well for everyone.
Terre
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Myra, thanks for sharing the pic - Mallory is so adorable!
Just celebrated my son's 17th birthday, such a beautiful day for it, and great to have everyone together. We have to be grateful for these happy occasions.
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Myra, Mallory is precious and oh so sweet.
3Holly, Wonderful that you could celebrate your son's birthday. Very special indeed.
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Yes, I do go to UW Carbone. My scans this week were at the new UW American Center location. That's good to know though for future!
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Hi everyone,
I missed a few days here with severe bronchitis, sounds as if it's going around. After two different antibiotics, inhalers and cough med, I'm finally feeling better. I think most hubby's are jerks at times, mine told my eleven year old daughter the other day he was tired of me doing nothing, forgetting about lunches laundry, dishes, bills etc.. After that I sat down with a book and enjoyed reading it.Hope all have a good day tomorrow. Marilyn
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LindaE you are freaking me out, so sorry you are having such a miserable time, so smart you are getting these scans, and hopefully you will get the help you need asap.
Deanna - how are you doing?? Pity party are needed sometimes, i kinda go through it myself, bcs my girls, sil, hubby all follow my moods, we cannot afford to fall apart. I don't like to be strong all the time, i wish i could just collapse, or better yet, stop thinking just for awhile but it's not in my cards. These are all good ppl here I see, we are good ppl, always helping and caring for others, go figure...beyond our grasp. Yep, if he will just get some details indeed, I get, but i think he is afraid to tell us what he really thinks, so far I left mesgs he did not call back, i shall wait.But we are moving on.
Rachel1 best wishes for a quick recovery.
Terre so...how much do you love the house??? Enjoy!!
Gaia0132 - regarding the oath, doc would be like what oath?? you know, most kinda forget it!
Amyq- love your idea of the bar AND the beach, oh my, terrific.
Myra oh Myra the baby....gorgeous!! i babysit some days of the week my little granddaughter and it brings such a peace, it is very hard on me, because i have to devote a lot of time thinking and doing research and getting together all the reports and going to docs, but that is why it is such a blessing to have this little one in my hands.
Bosco19 - love love your doc!! yes I have our Primary that supports us very much, so I could almost understand what is like someone that really cares. What got me is that this Onco has been with us for a few yrs now, and she seems so into my daughter, so why would she not be a better listener and more aggressive, she can't pooh pooh away Dani's pains all the time, it's too many little things getting lost in translation... I am glad that it seems we will be moving to a new place, new hope, new philosophy, we gotta turn this thing around, we were working the system till now, NOW we should get a fresh start.
Hopefaithcourage- Deanna is right about how some ppl can't deal with heavy stuff, again, that is another reason why we don't tell ppl about, no one in my radius is in the mood of making other ppl feel better we need to keep the energy for other things. But hubby's are strange like this, they always wanna be able to get things done, and this is out of his hands. Having said that, he should keep his whining to himself. But go teach an old dog new tricks.... Well keep strong and try as best as you can to ignore him.
Sorry if I overlooked anyone, warm hugs to all...
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I just typed a response and it disappeared when my son woke up crying for juice and I got it.
I just can't believe how hard and unfair life is sometimes. I am grateful to the kind and giving people I do have in my life but man oh man how I wish my hubby was better at this support thing. I do feel a little better knowing I'm not alone in this with the comments some of you have shared. I have a neighbor who is a psychologist and is going to get me and the hubby 2 separate referrals so we can both work on these cancer issues to help ease the burden of me getting sicker and passing. I was glad I talked to them bc when I do pass, at least I know that's another set of people who will reach out to help my husband and kids. I've noticed how angry and grumpy my hubby is all the time now. I know it's my diagnosis and also the conflict that was already there between us and was always there. Also he is doing real estate which is risky and not the best thing to be doing now that I"m so sick and making me be the one to hold the health insurance. I have been begging him to get a regular office job with health benefits to take the burden off of myself but he won't do it. There are so many times lately when I'd rather be alone than be with him but I know him, he won't leave and I am not leaving when I'm sick and maybe dying. I've been having rough and rougher days lately with lots of pain. I'm on maybe day 4 of Ibrance. I know it's soon but I don't really have any hope it's working. I don't really have any faith in chemo at all to be honest. I think my cancer will take it's slow and steady path and eventually kill me. Sorry I'm being so negative but I can't really voice these thoughts anywhere else. I know my kids will be alright though; they are full of life and energy and they will move on which is what I want to happen.
Sorry if I haven't been so responsive to you guys as individuals but this is a fast moving thread. I will try now:
Terre-cute new house and congrats!
Linda-hope you start feeling better and the scan Monday gives you an answer.
Rachel- how awful what happened and that these ladies were right but now onto the path of recovery.
Myra-adorable pic of the granddaughter!!
Momallthetime- I like the sounds of the newest onc- go for it, and the mistakes the old onc has made are just plain frightening to me.
Wishing everyone a peaceful and low pain Sunday.
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Thank you for the kind words and support. I really love him very much. He is as sick of me being sick as I am. He thinks the pain is going to go away and we care going to get on with our lives . I'm scared we aren't. I'm trying to come to terms with the chronic pain. Trying to keep my head above water. I'm taking too many pain pills again. Time to try a new pain doc I guess.
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cjanet your words echo my thought and feelings. It is so unfair !!
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Myra, what a bundle of love you have in Mallory. Thanks for sharing your picture.
Good luck with your scans, both Monday and Wednesday next week, Linda. There is always something, it seems. However, I pray these scans provide the information they need to help make you more comfortable.
I sent my copy of my PET to the Hopkins doctor. I like the way he gets right back to me via email. He says this treatment has been effective on most of my disease, but that the new mets to the liver could indicate it is time to consider a change. He says the light up value (I can't remember the name: suv, svu? value was low. Anyway, I sure wish he had the report when I met with my onc. His suggestion is Ibrance, and with Patty getting so sick after starting that, it is a concern. I'm pretty wimpy about the nausea I have with this chemo.
Falling asleep again, I think. I can't sleep through the night and can eat just about anything. I seem to have no nausea at night. However, starting around 1 pm, I'm no good to anyone.
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Good morning all. Thank you so much for the kind and loving words about my beautiful girl.
Dune, don't be afraid of the Ibrance. Please go to that thread and read about it SEs are very doable. Blood counts are the major downfall causing fatigue. I have not heard of anyone having nausea as long as you take it within 30 minutes of a large meal. I take it after dinner.
Cristina, perhaps some of your dark thoughts and pain comes from your stress and feelings about your husband. My DH has been wonderful, but our children are grown, so that is one major stress out of our lives. If we don't want to eat a regular dinner, we make eggs etc, etc. at the beginning though we did both go to psychologists. I still go, down to every other week and he still goes when he feels like he needs to "check in". His major problem is anger about the fact that billions have been raised and they still just have short term answers.
Momallthetime, Danii is so lucky to have you as her advocate, but please remember to take time for yourself. A nice massage or drinks with friends or a good movie. We all need this. Make sure you take it
Linda, be well. It seems like illness is going around earlier this year. Perhaps since it has been so warm, we are inside more in the a/c.
Hugs to all. Myra.
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Good morning all and Happy Sunday!
Sad to hear about spouses' reaction, but men are groomed to bring solutions. I remember reading that years ago in the book Men are from Mars and Women from Venus. Men and family members and entourage feel so helpless that they sometimes don't realize what comes out of their mouths. BF is very supportive but we don't live together. I've been alone these past few days and prefer it that way - don't have to cook, put on a smile etc. That said, I have no children and it makes it easier for me. Anyway, BF phoned this am and said he was so happy he got the virus as well because he would have been so much more worried about me. Guess his mind goes to dark places as well.
Marilyn - glad you're feeling better.
Dune - your results sound very good especially if low suv. Damn nausea though.
Rachel - how are you feeling today? sending you speedy recovery vibes.
Mommall - wishing you the best with whatever you and Dany decide. You have to take time for yourself girl. Coffee with a girlfriend, pedicure whatever, but please take care of yourself.
I slept well, the cough didn't wake me up.
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You guys are gonna love this, new Onco called Sunday morning to let me know about the plans w new Rad Onco, the current one doesnt know yet of our decision, but we are cautiously moving on. This guy is talking about a cocktail of like 4 or more stuff!!!
LindaE- rest well deserved!!
Cristina you are so young. It's never alright to be sick but being so young with young children, it's unthinkable. No words. This psycologist shold be able to help you. Talk to him at least. I understand all your anxiety and fears. We are there too. But maybe you have a lot of treatments still in the treasure box, ask around, bcs you don't feel well now, don't give in to those horrible thoughts, so sorry you don't have more support. I have taken stuff to help w anxiety, it does help. My heart was beating out of my body!! xoxo
Myra1211 i tell you I don't have patience for a/t, if you were to meet me in the street you'd never know. I understand Cristina so much, my daughter is so angry also, and she can never make plans bcs she never knows when they will b calling her for BT or scans or god only knows what. I do force myself to watch something for just a little bit to keep sane, i used to watch RHO anywwhere, but they don't have the new season yet, i think, oh they used to distract me! thank you for your support, this is a wonderful group of ladies.
Warm hugs,
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Myra, your granddaughter is so adorable! I think we all just want to kiss those precious little cheeks! I'm so glad you're getting to see her again next month. They just grow and change so fast in the first year.
Lindalou, that's such a good point about asking for whomever you know can get an IV on the first attempt no matter where we're being treated, if that's something you've had bad experiences with in the past. Even at ULCA, I always ask them to call the best IV RN on duty, rather than letting a tech try it, and they always do. It makes such a difference -- not just in the experience itself, but my scanxiety level in general.
Rachel, how are you doing today? When will they let you go home?
What is it with all the hubbies lately? It's not a full moon, is it? Even my normally wonderful one has been very snappy with me the past few days. I'm chalking it off to the stress of having to do most of what I normally do but haven't been able to in recent weeks, but the negativity and constant oppositional contradicting are sooooo frustrating, not to mention the daily reminders to stand up straight! I know those of you who are doing this alone probably envy those of us with spouses or SO's, but I'd like to loan you mine for a day and you can see what you think.
Christina, I think Myra had some very wise words for you about your hubby's attitude and behavior possibly adding to your dark thought process. It also sounds like you may be suffering from PTSD, which is totally understandable. I hope you will get those counseling sessions set up ASAP.
Dune, I wouldn't be afraid of Ibrance either. It has some SEs, but Patty's situation isn't at all typical -- if it even has anything to do with Ibrance, which it may not.
For my walking buddies here... I managed to do probably a bit more than 1.5 miles this a.m. -- slowly, and stopping often in the shade to catch my breath -- but it felt good to get that far. Miraculously, my shoulder blade pain has pretty much subsided, which tells me it probably was an injury, or maybe a tumor flare. But thank goodness it's not as all-consuming as it was for several days, and I'm feeling a lot stronger.
Terre ~ What a sweet thing to say! You can have my Zen attitude if I can have some of your LOL wit, which is what I love the most about you!
Hope, not sure if you mentioned it here or on another thread, but not having A/C has got to be tough, as hot as it's been in So. CA.
Happy Sunday to everyone! Deanna
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Hope everyone is enjoying the day. I had my semi-annual PET yesterday.
Deanna, yes, sometimes I think it would be nice to have a husband to help out. However, I know the one I was married to for 23 years would not have been up to dealing with this. My two fabulous daughters and sons in law have been tremendously helpful and they all live within 15 minutes of my home. I'm good with that. If only I could train my dogs to do some household chores 😉.
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Geeze...not suggesting this for sex, but maybe we should do a husband/partner swap for a week. Or maybe I can hire myself out. I reckon I could straighten out some of them; after 20 years of managing major construction projects, I don't take much crap from anyone. And I'm pretty good at putting out of line men in their place.
The only one I take it from is my DH. He went through the anger thing last summer (US winter) and was (excuse me) just an asshole. And I'm being nice. I could do NOTHING right. Well, fingers crossed, but he seems to have snapped out of his snappy crappy attitude. He still has his moments of high drama and over-reaction, but I've kind of learned to tell myself that it's his issue and I am not going to make it mine. I think the comments above are right - men want to solve problems and when they're powerless, they get angry. I read something years ago (during the Cold War days) and it said that women worry about their children's school work, nutrition, socialisation, etc., and men worry about nuclear war killing their children. So that kind of fits in with the anger of no cure.
Rachel - hope you get out of the hospital soon.
Dune - what Deanna said.
Deanna - (humour here) - glad you hurt your shoulder.
Seriously, glad it's resolving itself and you're feeling better. And thanks for the compliment. I just see so much absurdity in this stupid cancer thing. If I didn't laugh, I'd go screaming into the night.Christine - counseling will help. Prozac and counseling are my best friends.
Sending good wishes to everyone..sorry not to address everyone individually. My brain can only hold about one page of stuff at a time.
Hugs to all,
Terre
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i so appreciate all the comments on husbands. I love him so much and felt guilt for fussing about him. I cant keep up with this thread! ! I should find out scan results next week. Eek!
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Hope you all enjoyed your Sunday.
Cjanet and Hope: I feel just like you: life is not fair. I don't want to write down negative or sad feelings... I already did it in my diary...Now I am just on a "default" mode. My last 2 years were full of hope but now I am just surfing the wave and will do the best not to fall, but will not swim against it.
Regarding hubbies, today during lunch he looked at me and said something like " I never thought I would see you like this" meaning sad, without real motivation, he wants me to cheer up. I am now not even angry, I am just not the smiley, cheerful, extrovert person I used to be. I don't want to pretend to be someone else. So I just need to be around certain friends who understand that. I have had enough of the "cheer up" , "be happy". I am not whining all day but I am just not laughing and cheering up everyone.
Since we need to do something to keep us motivated, a house is a great idea!
I totally congratulate Terre for the house. That is so great. I have decided to start "designing" my son´s room. He will need soon a room with a desk and all that will be my project. And myra with her grandaughter! So beautiful. So projects are a good thing... I think... even with ups and downs.Yesterday was my son 5 year old bday and I went to a farm, a cow´s farm, so much fun... being close to nature and away from the city was so good
Now back to reality. I am considering a sick leave (leave of absence, not sure the right word). I just can't focus and I am a university teacher. Besides I do feel pain when I walk (I am limping a little) and my upper back/neck. I have to decide tomorrow. Any suggestions are welcome!!!
Hope everyone have a good night.
Love reading you all! Sorry I don't answer every post.
cyber hugs!
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LMAO at Terre going screaming into the night!!!!!
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it is not the right move for everyone for several reasons but stage IV breast cancer is on the list of conditions called compassionate allowance. So social security disabilty just needs proof of the dx and you are considered disabled. Now if you have a work history and assets you are typically qualified for SSDI which has a six. month wait before the checks start. Like I said this is not the answer for everyone, but I am currently home on disability with no regrets.
Anyone can pm me if they want more details
Happy Sunday Everyone.
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i am also approved for ssdi. My first check will be the end of this month. I'm so glad to be home with my family without the pressures of work too. My life quality is better. 6 months went by pretty fast and in 2 years I'll be given medicare. I'm using my ssdi to pay for private insurance and for grocery etc.
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Hooray HFC!!! I am so happy for you!
3-16: good advice.
Dune - always happy to make you laugh.
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Thanks for your advice!
Hugs!!!
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Hello ladies my CT scan results state that I am stable. no new lesions! YAY!
but the following is confusing. MO never mentioned my liver before and I don't know what this means..... I googled falciform ligament and it a liver thing.
Decreased density, anterior
aspect left lower lobe, adjacent to falciform ligament, compatible with
focal fatty infiltration, unchanged.any ideas? TIA
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LindaE
Hope cough is improving and the scan goes well
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Just jumping in here about being comfortable. I spend a lot of my time sitting in my recliner but I find it's hard on my bum. I have put a memory foam cushion on it but I still feel uncomfortable after a few hours. Lying in bed feels great for a while but then also feels uncomfortable. I can't lie on either side for long without pain. Anybody else had this problem and have ideas on how to solve it?
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HFC, I don't know, but it doesn't sound bad. I know we can get a fatty liver. Your report doesn't mention tumor or lesion or SUVs. It's just my guess, but I think it may be nothing to worry about.
Aoibheann, I tend to have the same problem. My sitz bones and femur are some major places of pain. Also ribs. Sometimes I just stand because it is most comfortable. Most of the time, though, I lay down. My body wants to recline. I may have to roll from one side to the other pretty frequently, and that hurts to do, but it's my favorite place these days.
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Well, I need a shower. Then off to rads. Then chemo. Then bed. Have a good day all. Terre: no running screaming into the night. Geez.
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Good morning all,
HFC - Congratulations that's awesome. Looks like the liver thing is B9 but I'm no expert of course
Bosco, thank you for asking. It's a bit better but still very much there - what about you? I almost had a meltdown at the hospital this am. Scan request did not include the neck and so asked them to include it because of the "surprise" mets in cervical and thoracic areas. Told me they can't do it without doc's approval - went to Oncology dept went on with my blah blah and was told impossible to change the request. Tears were starting to roll down trying to make them understand the necessity, but my Onc wasn't there and nobody could do anything about it. BS. So just went back to radiology and had the scan. Left a message to my nurse navigator about this, about the lungs/cough and the missing blood work request I usually have after a scan because of my kidneys. So, I will make myself a nice coffee and then go for a walk and blow off the steam. Sometimes, I think ignorance is bliss.
Aoib - no words of wisdom from me but hope you find a way.
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Hi All!, and thanks to all who have already participated!
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody!
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