Bone Mets Thread
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Hi all - Just popping in to say hi. Can't address individually - too much going on for my tired brain.
Love the photos, Amy enjoy your 2 weeks off, Dune hope your feeling better will continue! You have all my admiration.
Will continue catching up on other threads and make it an early night. It was so windy today that we stayed at the marina all day, relaxing and socializing.
Good night all. You are all in my thoughts.
Linda
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Hey Patty, thank you for the compliment, I try not to get my hair wet because it's naturally very very curly and I have a hard time straightening it. I am feeling ok and yes it did exhaust me, I was there from 1 in the afternoon til 10 last night. Today I have been a couch potato but I told my friend it was good therapy for the soul. It was all just girl time, we had a blast and my older sister joined us as well. I try my hardest to be happy and put on a smile because I feel it will make me feel better.
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Patty, your family is beautiful! Great pictures Annie! Our girlfriends always make us feel better
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Great pictures Annie and Patty! You and your family are so beautiful, Patty. And Annie - looks like a wonderful time and you look fantastic. Wish I could get my hair that straight! It's magnificent.
Too tired to address everyone, but sending good thoughts.
Hugs to all,
Terre
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annie. - thanks for sharing the pic. I love it. You look awesome !!! Who's dog is in the pic? So glad you enjoyed yourself. Now rest and recoup.
Hope more people share pics. Love seeing bco members and their families.
I've been up about an hour. Around 4am. Just not sleepy. Finally got my thyroid med doseage correct. I have much more energy and everyday my energy level gets stronger and stronger. Wanting to go for a swim to relax tight , stiff back but trying to wait til daylight. I am a little nervous to go in the dark by myself.
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Hello to everyone,
Patty the dog in the picture is my friend's dog, she is a little chihuahua and her name is Lucy. She is such a good dog and so affectionate. She came for a little swim with us and afterwards she gets so cold and shivers because she's so small so I wrapped her in a towel and cuddled with her on a lawn chair. I'm still tired from that day, trying to get some energy back. Glad to hear your energy level is improving. Did you ever get in for that swim? My back is stiff and sore too and it was nice being in my friend's pool because it is a salt water pool, wish she lived closer.
Lynnwood, you're so right, our girlfriends do always make us feel better. It was such a therapeutic day, for all of us I think.
Terre, nice to see you popping in, how are you feeling? My eldest daughter has a bad cold right now, trying to keep my distance. About my hair, it takes me an hour to straighten it, hurts my back doing it so I only do it every few days. I have a really good flat iron so that helps. Thanks for the compliment.
Wishing everyone a pain free Sunday. Hugs to all, Annie
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annie - thanks the background on Lucy. I feel back asleep before I got a swim today. Woke back up with sore throat and sinus headache. No big deal. Funny how we look st things change based on our experiences. Glad the pool helped your back too. It is awesome indeed. After summer is over I guess I am gonna have to join s gym with an indoor pool. Several gyms around here have s program for critical or chronic ill patients including stage IV cancer. Dr just needs to approve it then you get 6mo free gym membership. Gonna try that come fall
Hootie hoo
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Deanna, you are so right. Many thanks! (I am also quite healthy otherwise and I am reading the article on shut down the mechanism that drives cancer growth now, also many thanks!)
Annie, beautiful moments and beautiful photos, brightening the hearts here.
Happy Sunday to everyone!
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Thanks everyone for your well-wishes. It's a new day, and it should be a nice one. I hope to get up soon to hand wash scarves and sleeves. Then they can hang outside. We don't have a pool, so I'll imagine you in yours. Enjoy your day however it needs to be enjoyed. There's Patty, who has been up for hours through Annie Oakley, who spent a full day yesterday playing and will be resting today.
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dune - so glad you are feeling some better. Can tell by the longer message. Love hearing what's on your mind
Deanna - again thak you so much for the contact list. I guess I didn't realize how many were in our family. Wow.
Xavo - happy Sunday to you
Hugs all around.
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Thank you for the contact list and including this newbie
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It was a good day. I had some cramps, so I will be sure to tell the doc what I experienced this week. I also decided I would call Johns Hopkins about a 2nd opinion. I guess I will mention that tomorrow too. Oh yeah, tomorrow is my 2nd treatment. Hopefully this next week will be MUCH better. I talked to 2 friends today. That was nice. Debbie must have really needed to talk. She is living part-time at the hospital with her husband who is getting some heavy duty chemo. His cancer went into his CNS. It's not good. I talked to her for about an hour. Then her husband called her. 2 minutes later she called back, and we talked for an hour 47 minutes. Yeah, she was ready and needing to talk. It was good to talk to her. We have been texting, but that just isn't the same. Of course, now I can't seem to wind down. Breathe.
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Dune, glad you had a good day and definitely tell your doc about the cramps you experienced. So nice you got to talk to some friends today, sounds like your friend Debbie is going through a rough time with her husband. Why does there have to be so much sickness in the world? Hope you can wind down soon, I'm a little wound up too but had a good day.
Patty, hope you finally made it into the pool today. I baked in the hot sun watching dh rip our shingles off of our shed. Tomorrow up early because he wants to start putting the new ones down before it gets to hot. I told him I love work, I could sit and watch it for hours 😁. Seriously wish I could help him but he won't let me. Sometimes I get really frustrated, I don't like feeling like I can't do these things anymore.
Deanna, thank you for the contact list! Yes we're quite a large group. How did things go with your unexpected company?
Xavo, happy to brighten your heart and glad you liked the pics.
Hugs to all, Annie
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I just popped in to say hi to everyone! Dune, glad to see you're feeling a bit better than the last time I checked in. Annie, lovely picture! Love your hair, but have to say I'm jealous of curly hair! Patty, I saw a pic a page or 2 back of your kids, so cute! Lynnwood, welcome. Terre, hope you're feeling better,
Hello to HopeFaithCourage, Auroaya, leva, Xavo & Myra, SusanB, 3-16, Linda, & to Karz, & RonnieKay, Happy Birthday! , sorry if I have missed anyone, no slight intended it. It's been a long week with the MRI on Friday, travel for labs tomorrow & again on Friday for infusion.
I wanted to thank Deanna for putting together the list for our group. I like knowing that if I go MIA that someone will wonder & perhaps get in touch with my DH & find out if I'm ok or not. (it would never occur to him to post even though I've asked him to)
Have a good week ladies. We finally had a tiny bit of rain here & the temps are a bit cooler, I feel a bit better though the humidity is zapping all my strength. Hoping to feel better next week. Take care, Cheers, Dee
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Hi all,
Thanks for the kind wishes. My cold is about 90% gone, so I'm doing well. Dune - glad to see you doing better! And hope Patty got to swim.
Deanna - thank you so much for doing the contact list. Really nice of you!!
Just got home from work; left at 5:30 this morning and it's 6:50 pm now, and dinner is almost ready (hubby does the cooking), so I'll sign off.
Hugs to all of you...
Terre
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Thanks for all the birthday wishes, I had a lovely weekend. Joining the sinus "team" though - woke up yesterday morning sounding like I'd chain smoked all night & a box of tissues is my closest companion :-)
Happy Monday all! Hope its a good week for everyone, with no pain or progression, & lots of love & laughter.xx
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Good morning ladies: Annie, I sure know what you mean about frustration and doing things. DH and I had this talk yesterday, though it is opposite with us. He wants to remember and expect the way it was and I have to continue to remind him I'm not. I hate doing that so much. Like most of you here I was very, very active.
Dune, so glad you are feeling better and you decided on a second opinion. You onc may be completely on the right track. Validation doesn't hurt!
Great day to all...GG, Deanna, Linda,Xavo, Terre, linda, Karz,Patty,Auroya, Lynwood,and all the rest of you terrific and special women! (Decided to use that list as a brain teaser...LOL) Myra.
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Sorry to have missed you on my list Terre, you were on my mind but I slipped up. Hope you're feeling better & getting settled in. Haven't seen many pics of the kittens lately. I miss them. Cheers to all, Dee
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Since Annie asked about our last minute company, and since there may be a lesson to be shared, and also maybe because I need to share it, I'm going to tell you all about something that happened that I was not very happy about. We had dinner on Saturday night with these distant cousins of my DH, who has a very large, extended family. These folks live in NM, and while we enjoy them tremendously, we rarely see them other than at occasional family celebrations. So as we're driving them back to their hotel on Saturday night after a fun, full of laughs dinner, I can't believe my ears when my usually very considerate hubby starts a story with, "Oh, you probably didn't hear what happened," and launches into details about my mbc dx, including about how I ended up in the ER and needed a hip replacement. Ohmygosh... I could have strangled him, but I was literally frozen speechless! After we'd dropped them off and I had finally regained my voice and could ask, "Why in the world did you bring up my health?," his response was, "I don't think you tell enough people." Really????? Oh, I was so mad!!! But I think the lesson to be had is two-fold... First, be sure those closest to you know the boundaries of what is/is not okay to share about your health! And secondly, realize that maybe your primary support may need more support than he or she is getting, which is the only way I can explain what happened in our situation. Afterall, they don't have the daily support we do here on BCO, and maybe they need to talk about it more than we realize or allow.
I hope everyone has a pain-free, enjoyable week! I'll be thinking of you all. Dee, when do you get your MRI results? Oh, and I did catch another error on that list I sent out, so if there are other corrections or additions, let me know, because I will be doing a revised list.
Love the photos, Annie! You're looking great! And Dune, I'm glad to hear you've decided to go for a second opinion. I know you'll keep us in the loop re. when it is and what you find out! (((Hugs))) to all ~ Deanna
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deanna - thanks for sharing your story. I agree our primary supporters don't get enough support. My Dh has gotten upset a fews times with me for putting on my brave face for company. He can't understand why I try to minimize how bad I feel when others are around. He says he updates everyone how I am doing and then they see me and I say I am fine. Makes him look like a liar. I can understand that now. But he can't understand why I hate for my health to be the center of all discussions ,or how I hate that pity look they give , or having to explain why I am not eating lemons everyday to kill cancer ( or whatever the latest fad is). Not sure what the middle ground is.
Dune - hope your 2nd tx is better then your first. Glad you are getting a 2nd opinion. Even if they say the same thing at least you will know you've done what you can. Nice of you to be there for your friend when you have your plate full already. I usually feel better after I help someone else. Makes me feel valuable and theres always someone who's situation is worse than ours. Does she belong to a caretakers support group somewhere ?
Annie - shingling the shed roof sounds very hot. Lol - love working. I also hate that feeling of not being able to help with so many things. I feel useless. Please let me do what I can is what I want to scream
Dee \ gg. - glad to see you! I agree my Dh prob won't post on here when I die. Thankful for the list so hopefully someone will check on me. I also text regularly with a few bco sisters so hopefully he will at least text one of them for me.
Terre - wow. Now that's a long work day. You gotta be one tough cookie. No wasyo could do that. Very nice of Dh to cook. Who cleans up afterwards ,?
Karz - sorry you got the sinus junk too. Just irritating isn't it. So what's the weather like in South Africa today ? I am thinking hot all the time???
Myra - its hard for everyone to adjust to the new us. Plus the new us and our abilities change often.
Went for an early am swim again. Water is warm. I love it like that. All my stiffness just disappears after a few laps. Plus it feels good to exercise. The sun is a miraculous mental healer for me . Ds2 and neighbor kids are in the pool now. I usually get out when the neighbors come. Although the pool is pretty large somehow I always get run into by one of them playing , or splashed while I am laying on the float. Ds1 is s little embarrassed that his friends are staring at me. Checking me out he says. He said its embarrassing for them to talk about how hot his mom is. Lol. I am def not hot unless you count these darn hot flashes. Everyone with boobs is hot when your a 13 year old boy with raging hormones. I told him he should be proud of me not embarrassed. Lol. He is not hearing that. Still got sinus junk going on. No big deal after all we've been thru. Just annoying. Surely going thru the tissues. Thank God for aloe veto lotion Kleenex for my sore nose.
Hugs all around _ esp those I missed
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Patty, count me in as one who finds the sun a miraculous mental healer! Always makes me feel better and warms my aching bones. I love to swim and was disappointed that the first time I swam since diagnosed with bone mets, my left arm was killing me the day after. So now I mostly float in a chair...my perfect way to relax and spend the day. My husband I think is in denial, he is very optimistic about everything, including my cancer. He tells everyone that I am going to be fine. I HATE the pity look! Went to a bridal shower yesterday where someone called across the room " I heard your cancer came back." I could have killed them and of course got the pity look from a bunch of people that I don't even know. And guess what??? If you drink carrot juice, it will cure your cancer! Lol!
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Ugh that pity look and then inevitable "you eat so healthy, exercise and watch your weight! See I told you none of that matters". Maybe that's why it stayed away for 16 years and I chose to tell only close friends and relatives. Myra
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Getting PET scan...waiting for it...I'm very nervous. .get results tomorrow. ..I've been so good for last 3 mths that I don't want this test to rain on my parade. ..
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Carla. Hoping for good news in your MRI report. Good to see ya
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Dee, nice to hear you finally got a bit of rain and cooler temps. Today it's sizzling hot here and my dh has been on the roof of the shed laying shingles. Half done and he's calling it a day, just too hot!
Myra, I don't know what's worse, having our dh's treat us like nothing has changed or coddle us like everything has changed. I think we just need a happy medium. My dh goes to the extreme sometimes and I just want to scream at him, let me do something for once. It's always no let me get that, don't bend down, don't pick that up, my God enough already, I can still function and I know my limits.
Deanna, wow your story was an eye opener, thank you for sharing it with us. I try not to tell too many people either and dh is ok with that but I know sometimes he feels he has no one to talk to. It's a difficult situation.
Lynnwood, I'm with you and Patty on the sun and healing, especially the early morning sun.
Carla, sending positive thoughts your way and praying your scan shows good results.
Hugs to all, Annie
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Deanna - thank you for the contact list. It's reassuring for me to know that if MIA, there is a way to get news. And thank you for sharing your story. I try not to talk too much about my health issues but it hasn't always been good for me. I say I'm fine, I look fine, and then when friends expect me to do things I'm no longer capable of doing, they are perplexed. Some good friends of mine with whom I was not being honest thought I was ignoring them. Damned if you do and damned if you don't.
Dune - I hope your second opinion goes well and that you keep on feeling better.
Good to hear from all of you - so much going on when I don't visit regularly that I will not even attempt to individualize my posts! Nevertheless, I caught up on everything on this thread and know that you are all in my thoughts.
The heat here is awful and so humid. Still having fun on the pontoon and beach. But pain flare is pretty bad these couple of days. I hate them.
Wishing us all pain free days.
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Hi all! Frustrating day, my onc sent new blood work orders to our local hospital but they never seem to "get it". They are trying to get me to travel over there 3 or 4 times a month for the same tumour markers. I spent a lot of time on the phone with her assistant who said she would call them to straighten it out. I get there and yes, they spoke to Lou, but they still have 6 sets of orders in my file! Luckily one of the RNs that I know brought my file over and we threw out all the ones that weren't needed.
I don't get my MRI results for a couple of weeks yet, but I should get my markers tomorrow or Wednesday. I must run and get dinner going. But I'll check in tomorrow. I hope everyone is well. Cheers, Dee
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dee still hoping for good MRI results.
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Just caught up on the last few days of this thread.....what an amazing group of women.
Karz - Happy Belated Birthday from Colorado! You are younger than me - I'm 48.
Patty and Annie - thanks for sharing all of the great pictures! I love seeing your smiling faces and being able to picture you.
Dune - hope you are still feeling better. I may be in the minority but I am a big fan of steroids. They totally helped with my SE's during chemo AND gave me energy, although I usually was very grumpy after taking them for 4-5 days. Also - when I couldn't eat anything at all my husband gave me Keefer. I think that's how it's spelled... it's like a yogurt smoothie... full of probiotics that really helped with my stomach.... I seriously think I lived on the stuff for 3 months.
Myra - when I tell my husband I want to move to Italy he says "okay"... because he says okay to almost everything I ask... he is afraid to tell me "no"...which is a problem in and of itself and leads me to Deanna's story and comments.... you are totally right - we have this support group, and our families don't.... so they probably need someone to talk to about how it feels to live with someone with a terminal illness. I had never thought of that. (anyway, I DO want to move to Italy.... and I'd love to go to Greece...that's next on my list!) However, at the same time my husband is also in the eternally optimistic camp... he is positive (or ACTS positive) that I am going to be just fine... that I am going to outlive him....
Patty, Deanna, Lynnwood and everyone else that commented on the "happy medium" and balance and hating that "pity" look....I couldn't agree more. I was JUST thinking that I needed to start a thread on BCO on related topic... I feel like nobody see's "Andrea" anymore... they just see "andrea plus cancer". While I appreciate everyone's concern, I wish everyone would stop asking me about how I feel, or asking about my current treatment, etc. etc.... I feel like I must have been on Channel 9 news when I was diagnosed because literally EVERYBODY I run into asks me some sort of cancer related question.... or, "oh my god, you look great!".... in a very skeptical voice... like they are half expecting me to be dead. It's been almost three years.... I want them to move on. But....having those thoughts makes me feel like I am not grateful for their love and support, because I AM... part of the reason I want to move to Italy is so that I can be surrounded by people that don't know I have cancer. (not to mention the fact that even if they figured it out, I wouldn't understand what they were saying to me!!!) My mom is here visiting (her 80th birthday was the 10th and it's her first without my dad - he just died in April.) and she was telling me that her friends are "always asking about me".... and I said "really? what do they ask?".... and it wasn't about my job, or my husband, or my beautiful children.... it was about MY HEALTH. I almost had a melt down.
That's what my boys would call "a rant".... so I apologize if I sound totally negative. I hope I haven't offended anyone.... thank you for listening.
Deanna - thank you for the contact list! Thoughts and prayers to all of you waiting for scan results... hello to everybody I have missed, and hope you all have a wonderful week.
XO
Andrea
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Hi to everyone, love the photos posted!
I can't keep up with this thread at all
Got an MRI today. Neck and back pain is worsening. I"m using a lot of narcotics but also essential oils. IF this MRI shows progression then I think it's time for chemo. My tumor markers haven't changed much in 3 months. I was hoping they would go down a lot but no such luck.
Exhausted and worked today, but just wanted to pop in and say hello.
My husband's office pooled money and hired us a nanny/housekeeper twice a week for 7 weeks. This is her third week and I'm already considering hiring her one day a week when this is over. So nice to come home to a clean home, and the kids like her. But during the school year she works full time for one of the realtors in my husbands office, and they have a huge house. It's expensive too.
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