Bone Mets Thread
Comments
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trading mama - you are going skiing ? I hope you get to enjoy it and make some wonderful memories.
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Wow - off skiing! You go girl! That's great Reading.
Lymphadema can occur anytime the lymph system is blocked or disrupted/damaged. Or when it's over-active. DH had a major hernia surgery (three hernias actually when they opened him up). He has mesh in his tummy which the LS said could be causing a blockage of the lymph system. He'll be going back for more appointments; just not sure when. And I'm hoping against hope that it's covered by the medical system; his GP and the District Nurse were pushing hard for that. Once he's had the echocardiogram and they see if it's at all heart related, they'll decide next steps. If it's not his heart, he'll get some stylish compression stockings.
We went to the A&P Show today. Great fun. Going to do some photo editing this evening and get stuff put up on Flickr.
Hugs to all,
Terre
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LindaE,Brrr. Like we say here, it's not the temperature, it's the wind! Finally warmed up here the last couple days. Nice enough for me to finally venture out and sweep up a little dusting of snow. Made my back hurt, but the fresh air felt good.
Nice to hear those encouraging words regarding your 1st year of treatment. I know I feel a little better than I did last summer, but it's still been a long downhill slide from where I was at this time last year. Hope for better days for all of us.
You are so right about staying on top of everything yourself. But it sure can be exhausting. Spent many hours the last 2 days bouncing back and forth between clinic and insurance trying to find out what they will and won't pay for and why. Do you have these issues with insurance in Canada?
Stay warm!
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PattyP,
Shoutout back at you! How are you feeling lately? Hope all the flu bugs are gone from your house and you are resting and getting stronger every day.
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Just want to chime in on the genome testing. There are more and more labs doing this type of testing. My MO said the same thing when I brought it up. However, I have talked to women that it has changed the direction of their treatment for, hopefully, extending their lives. I spoke to a lab in Arizona last month and was told it would be covered by insurance. I will need a new biopsy, so I haven't persued this yet.
Just finished my 3rd cycle of Xeloda. Yuk! Gotta be a better way. Will it extend my life? Crapshoot! If it does, will I be happy living that life in my pajamas, laying in bed most of the day too tired to do anything with just a touch of nausea, but enough to make it all seem yuk? That was a run on sentence. Is it my Unicorn Poop? I dunno yet. Not sure I believe in Unicorns, though
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Just a quick hello to everyone before I head off to bed. Rebecca had some minor but painful surgery yesterday, so I've been busy playing nurse. It's been a distraction, that's for sure.
Hey, jobur from Wisconsin! We'll be rooting for the Pack this weekend! Supposed to be 40 here tomorrow -- heat wave! Maybe I can get my car washed so I can remember its color. Thanks for the comment about my acceptance of my dx, but I'm not so sure about that. Some days I do, and other days, not so much. It's just too unreal when I feel great and I'm not having any trouble with the meds after a week. If somebody hadn't told me I was "sick" I sure as heck wouldn't know it. I'm not complaining, believe me. Who complains about feeling good? It's just that it's harder to really accept after the dx two weeks ago. It's confusing. I think I'll probably be bouncing around with this acceptance thing for a while. It's good to know that I at least sound like I'm dealing with it. Maybe that's the ticket --fake it til I make it! Or maybe acceptance isn't really a big priority right now. If I don't jump into accepting it, maybe that'll stave it off for a while. A girl can dream. Well, I'm rambling now, so it's time to get some sleep.
Have a good night everyone, and a good weekend as well. Have some fun! Look for unicorn poop!
Sharon
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Romansma - just for you!
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We went to the A&P show. Great fun as always. Love the sheep dog trials. A couple of pics below; more at https://www.flickr.com/photos/sparkleinlv/ if you're interested. The dogs just live for this; they are so intent.
For those of you not familiar, these types of dogs are typically really lean. They're not underfed; they are beautifully taken care of. When there are dogs working the sheep in the ring, the other dogs watch - just focused on the sheep and what's going on. Really fun to watch them too. A young dog tried to jump the fence and get into the ring to "help" the competing dog today. Gave everyone a good chuckle.
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Kiwi, that rainbow cat unicorn butterfly pic made me laugh.....and it's 2am here, dark, and my husband is snoring. Love the dogs too! The one pic with his eyes so intent on the sheep. I've always loved dogs. I have 4 of them now. Although, they need to get out and herd some sheep....they are getting fat
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BeAutiful pictures of the dogs and the less than real, although who knows, of the butterfly,unicorn cat!
It cheered me up since I have been in the hospital since yesterday afternoon..unable to sleep or eat. Night before last I had unrelenting pain after my third rads tx to my spine with no help from morphine or Percocet . went to Rads onc in AM and he assured me the pain was from CA leaving my bones and nerves more brittle and exposed and it was fine though probably inflamed. He gave me decadron and I went home. After immense pain returning I went in an ambulance and here I lay with neurologists poking at me but no etiology of the pain confirmed although better pain meds. got a single room with a place for my hubba to sleep and work and able to stay with me. What a blessing! It's 6am and no food til 7a. now I'm STARVING! Best to all ! 😷
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Sorry to hear your in pain Valerie. I hope they find the source, I had rads to my spine a year ago and I, too, had intense pain. Vicodin, dilaudid...nothing would touch it. However, the steroids finally helped. Felt like someone was taking a sledgehammer to my forearms for hours on end. Feel better
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Good morning all,KWC those pictures are beautiful! I really hope your DH feels better soon and they sort out whatever is causing the LE.
Valerie - sorry you're going through this. Hope you can get home soon pain free. Those rads really did a number on you.
Romansma - I wonder if the SEs tend to wear off after a while?
Sharon - your dx is so recent, it takes time to digest all this. I remember feeling somewhat "relieved" that they had finally figured out what was wrong when I was dx. My GP dismissed the pain for 3-4 months before a thorough investigation. Glad you're feeling good and hope Rebecca gets better soon.
Jobur - We don't have those insurance issues here in Quebec because it's a public medical system. The hardest past is getting into the system. If you don't have a GP (and a lot of people don't have one and the waiting to have can be very long), you wind up in ERs which are always packed or medical clinics. Having said all that, having a PET scan, although free (but we pay taxes through our nose) is almost a miracle because of the waiting lists. There are private clinics, in fact more and more, and depending on private insurance coverage, if any, some fees are reimbursed. There have a lot of budget cuts in the public system and we are expecting more. The only time I had an issue with my insurance (ex-employer's plan) was to get Aredia which requires a pre-approval and justification from the doctor. People who do not have a private insurance coverage for medication fall under the public system and once you've reached roughly $1,000/year out of pocket, there's no charge.
Linda
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Hello everyone,
Jobur in answering your question about rads, I am still a little worn out and hoping it subsides soon. I am hoping I feel some relief from the pain as well but that's not happening as quickly as I'd like. My sternum and rib have settled down now but my humerus and L5 still hurting a bit. Just praying I won't need the surgery for my humerus.
Sharon, hoping Rebecca is on the mend from her minor surgery. Yes taking care of others can be a distraction from our own issues. I hope she's in much less pain today.
Terre, how nice of you to post that picture for Romansma. It made me laugh but also made me feel like that was such a beautiful thing for you to do. You're the best! I hope dh gets all his answers soon and will be on his way to recovery. Loved the pics of the dogs too. When dh and I were in England we went to the Greyhound races, omg these dogs are so beautiful and so fast! We were in awe and it was a memorable experience. I'm an animal lover, and I must say they tend to cling to me too, I think they sense it. People on my street laugh cuz I walk all the neighborhood dogs.
Valerie, praying you're feeling better today and that your pain is under control. I was in some extreme pain during rads and it's settling down but I still have some issues as I mentioned with my humerus and L5, I guess it can take time. All the best to you.
Romansma big hugs to you, praying for less pyjama days and more getting out and doing things you enjoy days!
Hugs to all, Annie
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Just chiming in again on the insurance issues. I'm realizing how fortunate we are here. Everything is covered through OHIP, all tests, scans, MRI's, surgeries you name it. The only thing we need private insurance for is dental and drugs and even that is covered almost 90% by my husband's insurance through work. For prescriptions it doesn't matter what it costs I only pay an 8 dollar dispensing fee and for dental we have a maximum of $2000 per year. Oh and for vision we don't pay for the eye test and our eyeglass coverage is $300 every other year. So it costs us very little and I'm so grateful. I'm not exactly clear on how it works in the States?
Wishing everyone a pain free weekend, Annie
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I loved the rainbow butterfly unicorn kitten! (Really, when would you ever not need one?)
I hope those who are in pain or discomfort experience relief and well-being this weekend.
jobur - Thank you for understanding the aggravation (but sorry you're dealing with it too right now). This runaround with the insurance and providers and I have something called a "medical home" which means my GP has to refer me to any specialist... Argh. The problem this week seems to be that the bureaucrats at my medical home thought the new referral for Dr Sweetie was a duplicate referral, and they never submitted it to my insurance co.
dunesleeper - that was a good point about the specialties. I googled Dr Sweetie and he is Board Certified in medical oncology, hematology and internal medicine. And his specialties are internal medicine and medical oncology (looks like it's only my insurance company that thinks he isn't an oncologist). Dr. Intimidating has more experience and education, and he has been a researcher in immunotherapy vaccines, but I instantly got the impression from him at my only office visit that he was too exhausted and burnt out for another new patient. We did not "connect" at all.
I think this situation is almost straightened out now. But we'll see. Anyway, I'm counting my blessings that I'm doing well right now, and also that I have a warm roof over my head and enough to eat when so many do not.
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Annieoakley and our other dear Canadian sisters,
After reading your post, I realized that the American medical insurance system must seem like a giant mystery. Rest assured, it often seems that way to many Americans as well! With the advent of the Affordable Care Act (ACA or Obama care), all citizens are required to have health insurance. In a nutshell here is how medical insurance looks for most of us:
- if you or your spouse is employed, you are generally eligible to purchase medical insurance from your employer. You may be offered one plan or a choice of several. Your employer may or may not pay a portion of the premium. Plans will vary widely in their level of coverage. If you only work part time, you may not be eligible for this at all.
- working in the public sector and/or belonging to a union, may bring about different options than working in the private sector. For instance, I work for the state of California and belong to a union. As such, medical insurance benefits are negotiated by my union every time we sign a new contract. Additionally, we are in a huge pool with all other state employees so we have several options when choosing an insurance plan.
- if you are self employed, you are on your own to find and purchase health insurance. I think this has gotten easier under the ACA.
- the ACA is not a public health care system. Each state has set up insurance exchanges and there are plans that you can choose from. There are a few states that have chosen not to do this (unbelievable!). Not sure what folks in those states do.
- retired? I can't claim to understand Medicare and dread the thought of having to go there but hope I live long enough to do so.
- self pay and privately purchased insurance are always available to those who can afford it.
This is only the broadest most general overview. For those who have chronic medical needs, this system can sometimes be just as daunting as ones illness. I have a headache from thinking about it!
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Caryn, thanks so much for explaining it to me, I was often confused as to why so many had to pay for things out of pocket. Your explanation makes it clearer for me. I think many of us Canadians take it for granted how lucky we are! I never have had to think of paying for any of my health care and that relieves alot of stress when having an illness is stressful enough. And I am confused as to why some states would not want ACA?
Hugs, Annie
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Hi all,
Glad you liked the butterfly/kitten/rainbow/unicorn. It was on another thread here and so I grabbed it for a friend..and then Romansma mentioned unicorn poop, so I thought she could use it too. Probably we all could!
Valerie - hope they get this sorted soon! That's awful to have so much pain. I was lucky, I guess, as my rads didn't seem to give me much pain. Just fatigue for like 6 weeks or so. So wishing you the best on them getting to the cause and getting rid of the pain.
Sharon - hope Rebecca gets well soon!
Thanks for the kind words, Linda, Annie, Valerie, and Romansma.
In New Zealand, we have public health, which is pretty good. Sounds similar to Canada, but we stop paying for drugs ($5 per prescription) at $100. We also pay $17 for a doctor's appointment (GP). The oncologist is free. That's largely because we live in an area with a lot of retirees and low income people, so it's heavily subsidised. If you live in a "rich" suburb, it's $10 per prescription and more like $45 to see the doc. And that's with no insurance. Private insurance is available, but it's expensive - would be on the order of $700 a month for me and hubby, if we could even get it. It's something like 5 years after diagnosis to cover any type of pre-existing condition, and I'm told my cancer would never be covered (that was true after Stage I as well). We don't pay anything for the MO, rads, blood tests, etc.
We're off to the Black Sheep Animal Sanctuary's Open Day today. They rescue animals that no one wants - roosters, pot belly pigs that have gotten too big, goats, sheep, sway-back washed up horses, beef cows that were pets, etc. Should be an entertaining time out. It's Wellington Anniversary Day here on Monday, so I have a three-day weekend! Yippie!
Also, if you do go to my flickr page, you won't be greeted with pics of dogs - I uploaded pics from our visit to the Steampunk Museum from our trip last Sept. You'll just need to go to albums and then 2015 dog trials to see dogs. I reckon it would be a bit jarring to expect sheep and dogs and see steampunk instead!
Hugs to all,
Terre
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annieoakley,
You're welcome, although I think my explanation was just the tip go the iceberg for our complicated system. I don't know enough to explain why some states have opted out. I am very thankful to have excellent coverage through my union and my school district.
Terre,
The steampunk museum sounds great. I love the clothing that those who are really into steampunk wear. Wicked, my favorite Broadway show, feature as it's main set piece, a structure called the clock of the time dragon. It is very steampunk in design.
Have a great weekend, all. Pain free, restful and relaxing. If you have Monday off for MLK Jr. day (in the States), enjoy that as well
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I've missed so many posts in the last few days! But Terre, hope you're hubby is feeling better. I just saw your last post about the steampunk museum, how would I see those pics?
Valerie, Romansma & Dune, I hope you're all feeling better soon!
Linda, I saw on the news the cold & snow down your way, wow! Keep warm!
Hi to everyone else on this thread. I will be sporadically in & out in the next few days, I have company coming for a few days. Luckily he's a pretty easy guest, tidies after himself & doesn't care if I have dust bunnies and best of all, he will pick up the dinner bill!
So have a good, painfree weekend! Cheers, Dee
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Dee - sounds like a great guest!
My husband's steampunk shots are better than mine. His are at: https://www.flickr.com/photos/grumpysaurus
But I have more posted! https://www.flickr.com/photos/sparkleinlv
The steampunk museum was indeed an experience! There's an infinity room; it's basically mirrors all the way around you and they turn on lights and they just reflect over and over. Feels like you're standing on nothing. Mike's infinity room pic is better than mine, but here's my selfie from the infinity room. Doesn't do the room justice, but kind of fun.
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Wow, great pics by both you and your husband. I am, there is no other way to put it, a lousy photographer but I love great photography. Thankyou!
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KWC - Those pics are absolutely beautiful! Thank you for sharing.Linda
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Thanks Caryn and Linda. Keeps me off the streets.
My husband is much more talented than I with photography, but what I lack in talent and skill, I make up for in volume!0 -
Thanks for all the encouragement, my fellow #HolieBoneMets gals! Still in bed. Maybe I shouldn't have bought such a comfortable mattress a few months back. Anyway, I was having some stomach cramping this morning and since the cleaning girls left me a sparkly tub yesterday, I decided to take a warm bath. I got the Epsom salts and this spa mixture of milk and lavendar along with a rolled up towel for my neck and got in. The moment I got to a comfy spot, I had to pee. I seriously considered just peeing in the tub, it was so hard to get back up! Anyway, crisis averted, I made it up and out without breaking anything. Just glad no one saw me do it. Not pretty!
Starting to feel human again. Hopeful
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I just had to pop in to say Rainbow Butterfly Unicorn Kitten! Pure genius! I want one!
Kiwi- I just love your photos! Those dog pics really capture their concentration and personality. I've been on Flickr for many years, so I'll be sure to check out your photo stream.
Went for my annual physical today. Last year we talked about going to an every 5 years pap schedule. Well breast cancer blew that out of the water. Damn disease ruins everything! Oh well, I survived. I did pretty well recounting for her everything that has happened since I was diagnosed 5 months ago, but started tearing up when she asked how my family is dealing with this. Actually they are doing well, but when I tried to answer the tears started flowing and just wouldn't stop. So glad that's over!
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Glad you're feeling better Romansma. I probably would have peed in the tub. I got into our bathtub, which is narrow and has no grab bars. And it's slick as ice. I did have myself in tears of laughter trying to get out - I was in because my joints were so sore, so getting out wasn't pretty.
Shutterbug - sending you hugs. The times I get the most depressed/freaked out are when I think about my little family (husband and cats) and worry about how they'll do with me gone. The reality is - the cats really don't give a damn and my husband is in denial, so they're fine! I can so relate to what you're going through. Glad you liked the pics. I'm guessing you have some good stuff too (figured that out from the "shutterbug" name cause I'm a smart girl!).
Hugs to all,
Terre
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dlb,
It's hard to get a straight answer on the insurance. The company says it generally gets it covered, but there are no promises and its about $4,000 without insurance. If it works, it 's worth it, but after an hour talking to FoundationOne and my local pathology department, I'm not holding my breath. Everyone says they're investigating, but somewhere along the line it disappeared and no one is fessing up. Cayuga Medical Center has only a small amount of the original biopsy left, probably not enough for testing, FoundationOne doesn't feel it would be useful to test earlier tissue samples from Fort Worth, since I had radiation after they were collected, and if my current treatment with Faslodex and Zometa is working, there would be even less active cancer to be collected even if I wanted another biopsy (and could get insurance to pay for it). Murphy has definitely been working overtime.
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Those are both great photo streams Terre! Especially love the shots of the dogs working. If we ever got a dog, I think we would get some kind of herding dog even if they are a lot of work, though I doubt we will get one now. I would never want to burden DH with an animal after I'm gone. Yes, Chuck is a good guest, we haven't seen him in quite a while so it will be a nice treat. I do spoil him by doing alot of cooking for him & he fixes any computer glitches & updates all my technology while he's here.
Romansma, I think I may have been tempted, but never would have been able to, Terre, for shame!! LOL! Our stupid bathtub is so hard for me to get in & out of, the only time I have a bath is when we stay in a hotel, otherwise I'm just a shower, in & out type.
Shutterbug, hugs from me too, I've had a meltdown, especially when someone asks me how we are doing. I guess I just need people to be professional, don't be nice to me, I can't handle it!
carpe diem, I guess I missed the part of the thread where you were talking about insurance & your biopsy. That's awful, I hope you get it straightened out.
I think I way over did it today, trying to get the guest room painted before Chuck arrives.... off to take some pain meds. Have a good weekend everyone, cheers, Dee
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Gosh Dee. I just went to a 3 year old's birthday party today -- and spent most of the time sitting at the table talking to the grownups -- and I felt wiped out. I believe I may be falling asleep now, so I'll see you all later.
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