Bone Mets Thread
Comments
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Dune, one of the reasons I chose Cuba was for their medical care which is excellent (and cheap). My insurance will not cover for anything related to cancer and no other insurance will either when there is a serious known underlying condition. I used to go to Florida before my dx, but I would not dare go back. Should something happen to me in the US, the cost would be outrageous. A lot of people from Quebec go to Cuba for hip/knee replacement (even plastic surgery) because of the low cost and medical expertise. The waiting lists in ortho can be pretty long here (not months but years) if it's not a very urgent medical emergency.I'm glad you're feeling better and planning all sorts of things.
Patty - so good to hear you're feeling better.
Linda
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Welcome back, Linda! I had no idea Cuba was a destination for medical care, especially since travel there has been quite limited for US citizens for many years. But so glad you got to go, even if you had some challenges while there. Good for you for making the trip with your sister, and I can't wait to see photos!
Myra, glad you're doing well with Ilbrance, and great news that your TMs went down that quickly!
Terre, I hope any stresses with moving smooth out for you. I know from what we went through when our house flooded and we had to put everything in storage and move out for several months how extremely stressful it can be. In fact, I blame my recurrence -- or at least it surfacing -- on that experience, so I can totally empathize with what it takes to pack up a home and move, and hope you will remember to take deep breaths and enlist as much help as you need to get the job done with as minimal amount of stress as you can -- for your future health.
Patty, so glad you're feeling a lot better! YaY!
Hi to everyone else! Hope everyone's week is off to a good start! Deanna
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feeling awake and energetic. Stayed up most if the day. Got a short nap a couple times. Everyone else is sleeping peacefully with. Mom at home and I am thinking if like a million things I need to do. Thinking about starting a list but then I would have to move. Lol. Better every hour.
Shout out to whom ever is still up ?
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Hey, Patty! Write those things down and get some rest!
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Goodmorni g. It's likev 3 am here. Feeling so much better I can't sleep. Lol. The dunk coming out tomorrow ... But it better hurry up it I am going to start googling sunrise pics
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So happy to hear you are doing better, Pattty!
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Patty, so nice to hear you're getting some energy back. Don't overdo it though, just plug away at your list slowly. Hugs, Annie
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I have a question about steroids. My onc wants to put me on a low dose. She says it will help with my energy level. I don't want to be on steroids, but I do have a heck of a time getting out of bed. I woke up at 8:30 and uncovered the birds and went back to sleep. Then around 10:30 I got up (which is actually earlier than I have been getting up). I ate and made coffee, then took my coffee to bed -- where I am typing this at 12:47. Who has experience with steroids? Will it help me wake up?
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I am LMBO at you, Patty, googling sunrise pictures. That's hysterical. That's also the only way I see sunrise anymore. That's both good and bad. It's bad because I'm being a lazy bum laying in bed too long, but it's good because the way I used to see the sunrise is by staying up all night long. When the sun started to rise, I would finally get sleepy.
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Dune, from your comments, it sounds like you've always been a night person. If that's always been normal for you, what makes you or your onc want to change that now? If there are reasons to change that would benefit your health, have you tried any non-med things to try to get to sleep earlier and/or get better sleep -- like turning off all electronics earlier than you do now, no food or drink after a certain hour, warm baths... lavender oil... keeping your bedroom really dark, things like that? If your natural tendency is to be a night person, it seems like steroids might just keep you going day and night, which may not be what you're after. Are you sleeping more than 8 or 9 hours a night?
Like all drugs, steroids have their downside. I would personally think long and hard before using them for energy when they might be hard on your body. Probably not what you want to hear, but JMHO...
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Terri, I don't want to take them. I'm just getting a little frustrated with myself. I want to do things, but when it comes to getting out of bed to do it, it's just very difficult.
My sleep is different than it was. I now get to sleep around 10. My goal is to get up at 8:30. However, when I wake up for a pee around 4 or 5 I turn the alarm off, already in the "hell no" place in my mind. For most of my life, I slept until around noon -- but I wasn't going to bed at 10 pm. For a little while I was getting up early. It might be the pain meds that are leaving me feeling so dizzy when I get up. An interesting thing is that I feel better after I take my morning pain pill. So......I'm in lala land when it has been over 12 hours since I took a pain pill and I wake up after I take the morning dose.
I have always been bass ackward.
Sigh.
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Dune, if you're getting to bed that early and sleeping until 4:00 or so, it sounds like you're either not sleeping soundly, or have a "hang-over" from your pain med (especially if you truly feel dizzy), or maybe just some totally understandable depression is keeping you from wanting to get up and get going.
Could your pain med dose be reduced at night or the times you take it altered? Is there a commitment you could make to get you up earlier, such as walking with a neighbor at 8:00 or a yoga, etc., class at 9:00? Would having something right by your bed to eat or drink first thing maybe help? It sounds like you need to try to get rid of the dizziness and have a reason to get up and get going -- not necessarily steriod-induced energy, although I still recognize there's a time and place for that. Deanna
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Well woke up strong but slept good part if the day away. Feeing weak but determined to get up and about before ds's gets home. We got homework , it's a beautiful day. Hoping we see family for awhile before exhaustion ymtakes back over. Stay hydrated.
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Dune, I have found that if I have definite plans during the day I am much more energetic than if I just have the usual, what am I going to do today. When I am out of bed by 9, I just need a quick nap in the PM to keep me going. When I laze around, I am foggy all day. Myra
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I figured out the picture...Yeah, Myra
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hello everyone! I have some questions about how I have been feeling on Xeloda. I tried the Xeloda page but no response. I am on cycle 4 of 14/7 daycycle 3000 mg a day. . I am feeling fatigue and and almost flu like feeling. Staying awake in the afternoon is a joke and I honestly don't know if it's because of chemo or because I take a motrin and Norco in the morning, however norco never made me tired before. The flu like feelings is messing with my appitite . I do however at night kinda perk up and therefore makes it hard to get to sleep. lol. i am a mess. Have Tumors on sternum, spot on my lung and many, many diseased nodes.any advise would be appreciate. Also, anyone else have multiple node involvement??Thank you Kate
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Hi Linda, nice to meet you. I am from North of Montreal too. Are you saying Medicare does not pay for our cancer appointments, chemo, surgery, radiation? Please say it isn't so. Does it depend on age?
You all sound so nice. Great family of people here at this forum. How wonderful.
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Hi Sunbeams - No absolutely not. It has nothing to do with age - it' all covered under RAMQ (Régie de l'assurance maladie du Québec).Nice meeting you too and don't hesitate to ask any and all questions.
Linda
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Thank you for replying. I see my doctor tomorrow. I will be back on the forum afterward. So glad you responded. Thank you
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Deanna and Myra, thanks for the suggestions. I have the alarm set for 8:30, and a couple of friends are going walking. I'll be calling them to see if I can join them. Well, I hope I'll be calling them. I took no oxycodone, just the oxycontin. I'm hoping that is the culprit.I will get this worked out.
Hi Kate. I have multiple node involvement. Sometimes they get angry and red. The rest of the time they are just plain ugly and hard as rocks. Mine are located above and below my right clavicle.
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dune - still up? Better get to bed if you are walking I the am
I am up feeling .....depressed. So ready for a glimpse at life again. Not death. Death stinks literally. Keep trying to hold on Til it gets better but the light at the end if the tunnel keeps flickering. Won't really let me see the end. So sick of beigh sick. I just want some normal life back. I have been incredibly blessed with family , friends , dh, ds's esc. Is this it ? Will it get better ? Can't continue like this. Just way too hard. Sorry for the crazy rollercoaster of emotions. They changing so fast I got to keep score cards. Crazy part cancer hasn't progressed since latest dx June 2013 but sure have had a complete uphill battle in side effects. So may not be the cancer that kills me but the unrelenting side effects. Home from hosputsl since sat but feel increasingly worse not better. So very hard to stand in my own two weak legs or even having the energy to chew food. Just feel like it's over. Could really use some support sisters. Sorry for the blubbering mess.
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My dear Patty, my heart hurts for what you are going through. I wish I had a magic wand to make this all go away! Have they figured out what is wrong yet? If I lived closer, I would take them to task for you. Do you have an advocate on your side? Can you get to a large teaching hospital for more definite tx and dx?
I am sure this is all wearing thin on your families stresses as well. They just want to see their mom in a light of health.
My best to you and yours. Hold on, don't let this beat you. You are bigger and better than this disease!
Myra.
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Patty, you've had a long, hard siege in the past couple of months, and your body and spirit are very tired. I know it's hard, but you need to be a bit patient and let your body recover. It takes longer sometimes to regain your strength than to lose it, but you are strong and you can do it. You must lean on your faith a little harder right now and know that you are going to get better in time. You have a loving family to live for, and your online sisters here are all cheering you on. This was never going to be a short sprint, so you have to hold on for the longer haul. Summer is coming, and that warm sun on your tired body will feel so good and so healing. You can do this.
Sharon
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Dear Patty - you've been through so much these past few months. It certainly is a roller coaster! Damn SEs. It is a lot to handle. Even though we have family, friends, kids who support us - sometimes we feel so alone in this journey. Did they give a dx on what is causing your problems? I also wish I could be there to help you. But you will get through this, one baby step at a time. You are in my thoughts and prayers every day (even when I was in Cuba
!). We are always here for you.Lots of love and hugs to you - Linda
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Oh, Patty, it hurts to see your post this a.m. and know how you were feeling last night. Hoping you were able to get some sleep and are feeling stronger this morning.
I've got to echo what Myra said about getting yourself to a large teaching hospital. I know just the thought of trying to do that can be overwhelming when you're sick, but from my personal experience (detailed on my bio page), I can tell you doing that made a huge difference for me. In fact, if I'd gone to UCLA from the start, I might not be here now because in spite of living in an area with beautiful hospitals and very knowledgable-sounding docs with fine credentials, they totally blew my care from the get-go -- which I didn't even realize until I went to UCLA, which is why I continue to make the 3-hr. one-way trek to see my lead oncologist, seeing my local one only for less important followup. I'm not saying anyone has blown your care. I just think that when it comes to bc -- especially anything that's a bit more complex -- many well-meaning docs just don't know what they don't know, and we are far better off in the hands of those who spend 24/7 dedicated to and dealing only with bc. (Off my soapbox...)
Anyway... here's a list of the places that have comprehensive cancer centers that include docs who focus only on breast cancer http://www.cancer.gov/researchandfunding/extramura..., as well as other top experts to sort out anything going on as the result of your bc.
Dune, GOOD FOR YOU for setting your alarm and planning to meet friends! I'm impressed with your take-control of the situation attitude!
Hi & Hugs to everyone else! Deanna
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I'm back from Down Under after a marathon series of airplane flights - everyone who wasn't on the roads getting in Terre's way was in the airports creating monster lines. We have great memories (and pictures) of Australia and New Zealand, but our favorite day was spent in Wellington NZ meeting Terre and gallivanting around the city. I couldn't resist the T-shirt: Seas the Day! perfect for carpe diem. Everyone we met Down Under was friendly and welcoming, but getting together with Terre was the highlight of the trip.
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Carpe_diem, welcome back! Sounds like you had a great time and thanks for posting the pics. I'm assuming that's Terre in the top pic? You're so lucky you got to meet her and I'm sure she would have been the highlight of the trip for me too! Love your T-shirt, how appropriate
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Welcome back! So glad you had a wonderful trip and got to meet Terre. NZ and AUS are beautiful, definitely two of my favorite countries to visit
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Love the photos! Thanks so much for sharing! Glad you're home safely, Carpe Diem. It sounds like you did really well with long flights and busy airports -- unlike the woman with mbc Alaska Airlines kicked off a flight in Hawaii! (Did you all read that horrible story?) And Terre, you look a bit caught off guard, but very much the fun-loving, mischievous woman I've been picturing! Wonderful to know you both better through these photos, and more wonderful that you two got to meet in person, in NZ no less! I would never wish membership in the bc sisterhood (no less the Stage IV sisterhood) on anyone, but the special friendships that come out of it are priceless! Deanna
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Welcome back Carpe-diem! - beautiful pics. I'm sure meeting Terre was the highlight of your trip!Patty - How are you doing today? Thinking of you.
Linda
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