March 2011 chemo-lounge
Comments
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Colo - I also keep a fan in my bag, particularly when its summer over here the flashes can be horrible. My sister calls them "Power surges"
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Hi everyone - I echo everything Divine said about flashes and wardrobe accommodations and I also don't take Effexor - didn't help and I didn't like some side effects.
Agree with everyone's comments about our amazing Lilylady. I'm in awe because I would be unlikely to have that much fun immediately after a Tx! Kay, great song selection for the jukebox. Always great to hear from you on here. Happy weekend ladies...
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All seems to be going well. They actually ended up burning out almost 2 inches of tumor in my brain. I have not noticed any changes -not sure if that's a good thing or bad thing. Must be a lot of stuff up there I wasn't using.
Had a good visit with the onc when I got my second Ixempra tx this week. So far the only thing I am getting from it is crappy taste buds. Interesting part was when I asked him to assess where I am at overall. I feel the best I have felt in a really long time. Regaining strength, lots of energy and in a good place mentally. So imagine my surprise when he told me to not put off trips, visiting people and taking care of business. WTF? He said with the aggressive nature that the cancer has taken on and the fact we are dealing with it by using old drugs things are not likely to get better. He also said while they certainly can go in and radiate out future brain mets at some point it will begin to affect me. He also said he certainly expects me to be here this time next year but maybe at a diminished capacity. Now he prefaced this with the whole "no one really knows what could happen" but he dead on serious about not putting things off. He has wanted me to retire for a while and I am doing all the homework to see if that is a possibility because I wonder if I feel so good because I am NOT working. I am going back Dec 1-and I am ready to use my brain and be around people (that aren't my parents).
I had decided to start spending my siblings inheritance but was shocked to find out how high the taxes and penalties are for dong that. An example is my company life insurance. I am allowed to get 50% of it but they will end up taking 40% of that. So if I get $40,000 from the company the government wants almost $16,000 of it. That is so not right. Where is the break for a terminal person? makes me sick-I just can't bring myself to do it knowing they will take that much. It is just like throwing money out the window. I can't get into my 401K until I am 59 1/2-and I am a few years away from that.
I went to Social Security and the guy I got was mostly a jerk. Funniest thing was I had gathered together every kind of ID I could think of because I wasn't sure what they would ask for. He spit out all my financial info-lifetime earnings, disability amount ect and never asked to see any of the stuff I had brought. When I tried to give him my drivers license he pushed it back. Then I went across the street to WalMart to return a $25 purchase and they wanted 2 forms of ID-hilarious.
Anyway I am looking into it and am thinking springtime to do it if I can afford it. A lot will depend on the scan results in Dec. If I am stable body-wise and the brain doesn't show anything new who knows what I will do. I get what he says-do what you want while you feel good enough to do it but I won't quit if I think I have to watch every penny I spend. I am getting used to the idea and before I would have said no way. The brain thing is a game changer for sure.
Sorry about your hot flashes-my sister is plagued with them and she drives us crazy. Poor thing is always stripping down and throwing open windows. Somehow I escaped that whole thing. My periods quit before the cancer and that was the end of it. We make fun of her but I can see how miserable it can make you
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Hey lily....I am so glad you are feeling good. That is amazing! Can you find another person to talk to about your life insurance and finances? There has to be some other options! I know when we set up our estate planning we had to do several things to protect our money so that our son would not get taxed in the event of our passing. There are some strange laws surrounding this, but there are also some ways around things. Just a thought. I hate to see you worry about money with all that is going on. So are you going to plan something fun and exciting while you are feeling good? I hope you can spend sometime doing something you have always wanted to do.0 -
Lily, so good to hear from you and that you are feeling so well. I remember you work at one of the auto manufacturers? Do they have someone who could advise you? A quick idea on the 401k is to take a loan from it rather than a withdrawal, no penalties, no taxes unless you stop repaying the loan. Some places don't allow you to do that, but you could look into it. Another idea is to do a reverse mortgage on your house. I don't know much about that. Last idea I have is to see if you're able to get accelerated benefits from your life insurance. Some policies allow that for terminally ill people, and I believe the benefits are tax free for terminally ill patients. If your insurance is thru your employer, maybe they can help you with it. I think you have a lot of years left, but is agree with your onc, don't put things off and enjoy life. I am trying to do that too. Even if you live to 90, life is short, you have to enjoy it while it lasts.
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The company life insurance is the one that said it is considered taxable income-no breaks for terminally ill folks. I have checked with 1 lawyer and 2 accountants-I would lose almost 40% of whatever I got. Already have a loan from my 401K-bought my sister a house 3 years ago-bitterly regretting that now. If I didn't have that payment I could easily retire. Loans must be repaid within 5 years so it is a whopping big payment. If I quit making the payment they will report that to the government and then that will incur taxes and penalties. She pays me about 30% of what it costs me-she is constantly bailing out her own daughter. She works hard but has never been able to manage her money. She just went thru bankruptcy so I can't just put it in her name and walk away.
I think I am pretty well screwed for the retirement thing. It makes me sad but the fact that I have used my savings to finance my times I have been off for 4 years has left me pretty well flat. Plus I bought a convertible in Aug-which I do not regret.
I will go back to work and work as much overtime as I can stomach and build my savings back up. That will finance some time off again in the spring. Just really pisses me off that all that money is what I worked and saved and scrimped for and I won't get to see any of it! And the same people I have been bailing out for their whole life will probably blow thru it in no time. That's why I decided I would try to spend some of it.
Sour grapes-just ignore me!!
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lily-what about long term disability?
On hot flashes-mine are much, much better on Arimidex than when I was on Tamoxifen. That is a godsend. I too have Japanese style fans. They are wonderful. I always have one with me.i tried Effexor, didn't work for me. I did recently start back up on Cymbalta to help,with the joint pain from arimidex, which was pretty significant. That has made a world of difference. Totally eliminated the joint pain. I feel the best I have felt literally since I started all this. The main thing I need to get over is the AI seems to make me feel very unmotivated. Kind of tired, but mostly listless. I am working on that.
Mdg-chemo knocked down my bone density too. But it was still in the normal range two years ago. I had a dexascan scan done in October, after having been on arimidex for 5 months. My PCP said all was fine and to keep taking calcium. The new onc said I had osteopenia in my right femoral neck and he recommended prolia. Called the PCP back to confirm. He doesn't do prolia until it is further along as it isn't always covered. Apparently the onc doesn't have those problems with getting it covered. So I got the shot. Didn't seem to have any side effects.
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Fluff - I have been on Atelvia for my bone density issues for almost two years now. Last year I got a 5% increase in bone density which is huge. I am still struggling with calcium levels, vitamin D levels and parathyroid issues which all effect bone density too. I have another dexascan coming up in February so we will see what happens. I have been having lots of bone aches and join pain from tamoxifen. My MO says it's not from tamoxifen but when I read online, some people do have these side effects. I have noticed when I take my vitamins religiously the pain is far less. Some days I wake up and my feet hurt so bad I feel like I am 80 years old. I am not sure which vitamin helps....I take a lot of things (multi vitamin, vitamin d, magnesium, calcium, turmeric and omegas).0 -
colo- You may be now going through menopause, hence the increase in hot flashes. Mine were terrible but seem to be easing up somewhat. Coffee, alcohol, and stress are the major contributors to intensity and frequency. If acupuncture is an option, you might try that; it worked for me, along with some anxiety meds. I was on tamox for 2 years and then have been on an AI for 1 year so far. I also get ovarian suppression. I think my body was responding to immediate menopause and that perhaps now it is getting used to going without estrogen. At least that's the story I'm telling myself.
mdg- I have similar joint pain; mine actually got worse on arimidex. Mostly my feet and ankles and my knees. My onc recommended glucosamine chondroitin, which really seems to help. Just ignore the smell and the list of ingredients
lily- I do hope you find a way to get your hands on your OWN money. That makes me so angry that it is tied up out of your reach. I hope you have something wonderful planned for when you get some cash built back up. I'm happy to hear that all seems to be well and that you're not feeling affected. You're doing fantastic.
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that sucks Lily! Not fair at all.
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Lily that's crazy - you can't rush off and do heaps of overtime now. I think at this point I would be thinking that I don't care if there is nothing left for siblings, or that the govt gets too much. You worked for that money and you deserve it. Does your sister know how your health stands? - I think I would be coming down hard on her - she cannot give your money that you need to her daughter which is effectively what she is doing! Get her to pay more of it or sell the house and pay you back.
Take another loan out on the 401K, reverse mortgage your house, it doesn't matter if the government gets a bunch in taxes as long as you find some way to have some fun over the next year. This is not a time to be sensible financially.
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Lilylady - First off, I'm SO GLAD you bought yourself a convertible -- fantastic! I agree wholeheartedly with Penny. Plus siblings aren't entitled to inheritance - if they end up with something, fine but it's not to be expected. You've basically already splurged on all of them as you've been bailing them out/ buying houses/ etc. throughout your life. Enough already. There's nothing sensible about this financial situation. I'd get what I can get and put the taxed amount out of my mind. It would be hard but I would do it... I want you to enjoy your days and nights and NOT be working crazy hours at work. We all know that takes a toll on any body - let alone a body fighting #$%^ cancer. Treat yourself the way you've been treating your family all these years. Like you pointed out, if it's left for them they'll blow through it in 10 seconds flat. Having said all of this, of course you should do what feels right for you. Keep us posted!
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Thanks for all of the replies, ladies! Maybe it has to do with my poor diet. I have been eating a lot of sugary crap lately. I need to get back on track. I also need to get some sheets that keep me cool at night! After some insurance issues over the last month with our HR department, I am finally back in network with all of my doctors so I emailed my OBGYN today to try to get my ovary removal scheduled soon. I'm hoping it's an outpatient thing and I'll be able to be back doing regular stuff a lot more quickly than I was after my hysterectomy. That was a longer recovery than I ever expected!
Lily-Please go out and spend all of your money and have fun! Don't have guilt worrying about your siblings. You have done so much for them already. Go out and do something for yourself, and enjoy cruising around in your convertible!
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Colodisney - my surgery for ovaries was out patient. It was not bad at all. They do it laproscopically now. I never took any pain meds or anything after mine.0 -
Thanks Mdg! Glad to know it will be fairly easy.
I hope everyone had a wonderful Thanksgiving and enjoyed time with family and friends!
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Hi everyone! Met with my oncologist today who is putting me on Femara because I am getting my ovaries out on Wednesday. I know there are several of you who are on it. Can you all please let me know how it makes you feel? What side effects you have? If you were on Tamoxifen and now Femara, what difference you noticed?
THANK YOU!
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Hi Everyone - just to say I hope you all have a very Happy Christmas and that 2015 is a wonderful year for you.
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Also wishing everyone from the "lounge" a very Merry Christmas with best wishes for a most prosperous 2015. God bless us, everyone
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Merry Christmas everyone! I hope your holidays are filled with family and friends.Had my ovaries out last week. Surgery was pretty easy except DD9 got diagnosed with the flu and then I got really sick. Coughing a lot really hurt my incisions but we are all getting better. Femara has been fine so far.
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Merry Christmas, Ladies! Had mammogram in November and onc visit in Dec. All looks good. I am unable to take any meds due to being triple negative, but three years is a big benchmark for TN's, and that was last March. No guarantees, but always glad when I can quit holding my breath for another year! Think of you often.
Enjoy the holidays with family and friends. These are times when we remember-again-what is important!
Kristy
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Happy Holidays and Merry Christmas to all loungers. Coming up on our 4 year mark-so hard to believe. We have all been unbelievably lucky with our cancer journeys.
I had a PET on Dec 18-mixed results. Some got bigger, some smaller and a few unchanged. We will stay the course for 3 more months. Can't afford to quit a drug that is even partway working-I don't have many options left. Still have the brain MRI on Jan 5-that has me way more worried. Some people never re-occur, hoping that is the case for me. Best thing is I haven't felt this good physically in a long time. Really strong and good energy. Still need way too much sleep but that is drug related I think. I skipped the late Dec apt-told him I would be back the first Tues of the new year-my taste buds were dying for holiday snack food-and I have given them quite a workout!!!
On to the New Year and may it be good to all of us.
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Thinking of you for your brain scan today, Lilylady, and sending powerful good energy!
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Hi Lily - hoping your brain scan was a good result, good to hear that you are feeling physically well. It is great to have us all fighting still at 4 years.
Glad the surgery went well Colo
Antarctica was breathtakingly beautiful (but yes - very cold). I spent a night sleeping on the ice (no tent just a sort of bag thing) - woke up with the icebergs on my 59th birthday. I also did the "polar plunge". I lasted about 1 minute in the icy arctic waters , and then rushed back to the ship and jumped in the hot tub with a scotch.
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I thought of everyone over the holidays but I guess I didn't actually post! Great to hear some updates. Lilylady, I hope your brain scan will be all clear. So glad to hear you're feeling good! Hope that keeps up. I like to think we're all living it up as best we can but Penny, you take the cake (does that expression translate in Aussie?!) Ice sleeping, polar plunging (which is a world apart from polar plunging into the Atlantic I would imagine!). You're my idol!! Hope everyone's 2015 is off to a fine start.
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Just checking in after the holidays and glad to see everyone is still doing well. Lily hope you will update with your results soon.
Penny, while you were happily freezing in Anarctica, I was happily staying toasty warm in Florida boating along the coast.
Heres to a happy, healthy, disease free 2015!
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I have been following your journey on FB Penny. So cool! Looks like you had a great trip. I also hope that Lily will give us an update with good news.Yesterday marks 4 years since my BMX and being cancer free for me. Can't believe it has been 4 years. All is well. I fell and fractured my arm around Thanksgiving but I am back to normal now. I got out of cooking Thanksgiving dinner though! Started my online business website so I am super busy getting things going. It is cold her in Chicago but we have not had that much snow yet...a little here and there but no real storms. I am sure we will get one soon.
Celebrating 4 years with all of you! Putting the song "Celebration" on the juke box! Hugs to all!
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MDG, I just realized earlier today, that mine is today. I was in an all day real estate rally for my company and we had a celebration at my table.
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Time goes fast, even when we are consciously present in the moment and making the most of each day. I feel like I've been through so many phases since December 22, 2010 when I fiirst felt that lump: Dealing with treatment and side effects. Reevaluate priorities. Adjust to son being away at college. Travel more with dh and go to more shows and concerts. For several years I lost interest in doing anything in the yard or for the house. Last year, I became passionate about yard work again and can't wait till spring to get into it once more
I'm fussing over home decor these days. Dh and I spent the past several weeks shopping for a new sofa, visiting 10 furniture stores. We've updated other things in the living room but have owned this sofa for 17 years! It's a floral tapestry pattern so we are updating to a solid color sofa. It's been fun visiting all the showrooms to see what's out there. Lots of ugly, uncomfortable stuff! But plenty of gorgeous furniture, too. I'm getting the carpets professionally cleaned and buying a new vacuum. January and February are great times to be doing all this. Passes the time and I wont have any spring cleanin to do!
Our son will graduate college in May. So proud of him, he's a great student and hard worker.
I go every three months for zometa and see the onc. My scans have been stable.
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Hello all! Can't believe Spring is just about upon us. I'm so ready for flowers. I recall that Lilylady spent time planting bulbs, right?! And Divine you've been in your yard so that should be glorious. I hope you and your dh are enjoying the new furniture - sounds like great fun. Hoping everyone is feeling healthy and positive. It's nice to have my 4 year cancerversary behind me. We need something on the jukebox. I'm gonna put on an oldie that I adore: Red Rubber Ball by The Cyrkle. I believe it was the first song Paul Simon wrote that became a hit. The refrain is:
I think it's gonna be all right
Yeah, the worst is over now
The mornin' sun is shinin' like a red rubber ball0 -
love the song! We had a glorious day here!
Penny.....I hope you haven't been blown away and that the cyclone was nowhere near you. I don't think it was. That is scary stuff and so sad.
I am ready for spring and flowers also. And sandals! Although that also means my hot flashes will return in force. Now that I am on arimidex, the hot flashes are much better than when I was on tamoxifen,so that is good. However, now I have joint degenerative disease in my wrist, probably due to that. I'll take this over bad hot flashes any day...although it hurts like fire.
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