March 2011 chemo-lounge
Comments
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Hi all, I am back! What a great vacation and a wonderful country. The people are the kindest most gentle people I have every met. HOWEVER, I have never been so hot in all my life, and we have had a hot summer in Indianapolis. My clothes would be soaked within an hour of walking around.
Our funniest story, which was not funny while happening...we went to Ayutthaya, the ancient city to see the ruins, etc. Had a personal driver. Told him we were going to rent bikes and ride around to the sites as I had read that was one of the best ways to see everything. He just kind of looked at us funny. So...we rent the bikes and off we go. The sites in scattered among normal things in a city. No one else is on bikes anywhere. It is 95 degrees at 11 a.m. We see two sites and I am getting a headache, worried about heat exhaustion, which I have had before. We decide to go back and have the driver drive us around so we call and say we will be back in 20 minutes. Then...we get lost. 90 minutes later, stopping so I can cool off and not throw up in a coffee shop, riding up and over a bridge that we didn't need to go over as we should have turned right before it, hitting a bump that made my seat go down and not back up so I looked like my knees were hitting my chin when I pedaled, asking at least five different people who all gave us the same general directions but not specific streets in very limited english...we arrive back. In the meantime, we saw almost all the rest of the sites, although briefly. We told the guy to take us back. I was chugging water, taking advil and made him put the air con on as high as it would go, which is still not like our air con. I have never been that hot before.
After we got back to Bangkok and the hotel room with a cool shower, I was starting to feel better and then we were laughing. My daughter was shaking her head. Thank heavens she couldnt come with us. She would have moaned worse than me! I am just thankful I didn't schedule my original plan, a 25 mile bike ride into the farmlands and rice paddies. I would not have been fun!
Maxine....where did you do the Making strides Walk? I did the Indianapolis one last year, and felt the same way...very unorganized, sponsors not there, no one could tell us where to go, etc. I filled out their review after and tried to provide a lot of constructive advice, but did not do it this year.
Oh...I don't think I have lymphadema, as no swelling and both arms measure the same. saw the LE specialist who was pretty worthless and she couldn't really say either. I do have a little soreness in the non cancer side, but it seems to be more like tendonitis, especially when I do a lot of typing or texting on my phone. I did wear the sleeves on the 14 hour flight, as well as some compression socks. they socks felt great, the sleeves were awful. I couldnt wait to peel them off when we landed.
I cant post pics with my ipad, but will put a few up in the next day or so, including one of Dirty Harry, our young rescue that we have had for five months. He really missed us!0 -
Great song-Divine !!!!---Lily and Kymn---hugs to you both !!!
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Hi Fluff - glad you had a good time. Cycling around in that heat and humidity is INSANE - you are lucky you did not drop with heat exhaustion and are here to tell the tale
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Kymn - so glad you popped in! I am saying a prayer that the relocation is a brand new, good start for all of you. I am also glad to hear you are doing well.
Lily - so sorry about your brother's dx. I am glad he has you to help him through chemo. Best of luck to him and lots of prayers coming his way!
Fluff - quite a story. I am getting hot flashes just thinking about it....
The new puppy is wearing me out. She is sleeping through the night but I am up at 5am every morning. I am staying busy with lots of other things right now too - home improvements, volunteer work at my son's school, teaching fitness classes, etc..... Never a dull moment!
We had our first snow flurries here this morning!!! Brrrrr!
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Fluff- Wow! I am hot just reading your story. What a crazy adventure! I am so glad you had a great trip. I did the Making Strides walk in Valparaiso. The fact that the Indy one was also poorly organized worries me...if they don't do it well on a large scale, I wouldn't expect much on a smaller scale. I don't know if I will do it again. We participated in the Relay for Life last summer, and it was organized so well that the Strides really paled in comparison.
Lily- I am so sorry to hear about your brother. How dreadful.
mdg- good for you, keeping so busy. I hope the puppy learns to settle down a little bit to give you some rest from that!
I love that you all keep putting songs on the jukebox, but I can never think of one. I keep a playlist on my iPod that I call "Life is Good", so from that list, I will put on 'Three Little Birds' by Bob Marley...
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Thanks Divine I will go and listen to that song now
How are things going for you?maxine that is great news that your mamogram was all clear, such a relief isnt it. I cant wait to pass the 5 year mark.
Thank you Penny for all the positive vibes you have been sending my way. I sure hope 2013 is a better year than the last two and that my heart will heal.
Lilly I am very sorry to hear about your brother, it just doesnt seem right or fair both of you having to fight this nasty disease,sending positive vibes to you both.
I am thinking about volunteering at the cancer center here in my city, have any of you gotten involved in this?
Ok coffee is calling talk with you gals later.
Hugs Kymn
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Oh I missed a whole page before i posted ooops. thank you mdg and stilts, its good to be back with my sisters, I really do hope this move is a good one too. My kids are adjusting well as their dad lives here so now its just moms turn. Have a great wednesday
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Lilylady - Cannot believe that you and your family now have to deal with this awful situation. Your brother is lucky to have you. As you point out, the docs sometimes give "x number of months" but things can work out differently. Stay strong. And I hope you've found jeans you're happy with -- you so deserve to feel fantastic in your jeans!
Love the music currently on the jukebox. Sorry some are dealing with scares and LE. I just started on Effexor 4 days ago to help with depression and hot flashes. Too soon to tell how it's working... Hugs to all.
Kymn, SO GREAT to hear that you and your kids are getting on with your lives!!
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Kymn - I am getting involved. I did a fundraising walk with several other BC survivors from BC.org and we raised over $13000 together! I am also volunteering with the American Cancer Society. I spoke with them a few weeks ago and am waiting for training in January. I am going to hopefully be available a few hours a week to meet with newly DX patients and explain the services the American Cancer Society offers. I am also going to volunteer to be available to chat with local women one on one that have a similar diagnosis or treatment that I had. That is also through the American Cancer Society. I was going to be a peer to peer counselor through Y-Me but they closed up. I am also going to teach some fitness classes at my local cancer center (for free) hopefully starting that in January. I also chat on the phone with women using cold caps that have questions and need support. I am finding helping others to be very rewarding. It's nice to pay it forward and offer someone hope in a difficult time.
Lily - thinking of you. Today I was in Yoga and they asked us to dedicate our practice today to someone. I dedicated that hour to you girl! Always praying for your health and continued positive outlook! You rock girl! Please give us an update on your brother....sending prayers.
The puppy is sleeping through the night which is awesome. Today was the FIRST day with no accidents in the house! The good thing is we have all wood floors so clean up has been easy (thank God!). I am getting ready for Thanksgiving....my sister, mom and neice and nephew are coming. My son is so excited to see his cousins. I am doing a whole lot of cooking! It will be fun to have family here for a holiday in our new home.
I hope you all have a great Thanksgiving. Be well!
I am putting "Walking On Sunshine" by Katrina and the Waves in the juke box....it was sunny here today!!!
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I'm putting Natalie Coles Be Thankful on the jukebox and checking out for a couple days to get the cooking done. Happy Thanksgiving everyone! Thankful to still be here and for great doctors fitting for me.
You may be in a big city or drivin' down a country lane, yeah
Workin' two jobs to make a livin'
And all you do is complain, well
You should be thankful of what you got
Yes, you should be thankful of all you got
Wakin' up in the mornin', seein' the sun rise
(Well, well)
Is enough to say, "I thank you, Lord"
Rollin' over, seein' my baby's eyes, uh
Is enough to say, "I thank you, Lord"
I just wanna say thank you
(Thank you)
Thank you, thank you, thank you, Lord
(Thank you)
(Thank you)
Thank you
(Thank you)
Thank you
(Thank you)
Thank you, Lord
Be thankful of what you got
(You know you should)
Be thankful of all you got
You may live in the valley, you may live on the highest hill
Some people say, you don't do nothin' but take the doctor's pills
You may be in a nursery, in a classroom
Drivin' your big fine car, hup
Airplanes, uh, take you, uh far
Layin' out in the sun, uh, or just workin' on the run
Hoo, you should be thankful of what you got
I know you should be thankful, oh, yeah, of all you got
(Well, well)
Yeah, ooh, oh
(Be thankful)
We need to be thankful of what you got
Of everything we got
(Be thankful)
We need to be more thankful
(Of all you got)
Of everything you got
(Be thankful)
Thank you, thank you, thank you
(Of all you got)
Thank you for all I got
(Be thankful)
Thank you0 -
Beautiful lyrics, fluff. Happy thanksgiving to all my American chemo lounge buddies! And happy Thursday to everyone else!
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Happy Thanksgiving girls! Lift your glasses and say Cheers!
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Hello ladies! I hope everyone had a wonderful Thanksgiving! I have had lymphedema right from the start after my mastectomy which only got worse from the radiation . I wear my sleeve daily and also have to wrap my arm in a sock-like thing, foam, and three extra long ace bandages every night. I have exercises to do but I am lazy about them. What I have noticed the most about my arm is that I can feel it swell based on what I eat and drink. Weird, but bad food/soda/carbs/etc make it hurt a lot worse and make it swell up more than healthy food, water, etc. It's been almost two years now and some days are better than others with it. Maybe I am used to it but it doesn't seem to bother me as much as it used to. What does bother me is when totally random people who don't know me ask what the sleeve is for. I am shocked that a stranger would ask such a personal question! Usually I say something shocking back to them. Aren't I terrible?
I have a bunch of appointments this month just to get them in before my deductible starts over in January. I hope everyone is doing well!
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Good morning ladies, hope you all had a productive week and enjoy your weekend
Hugs Kymn
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Hi girls, glad to catch up with everyone. Kymn, good to see you! I remember you and I started chemo on the same day-fun club, huh (plus the TN club-ack). I had my six-month mammo today and it was clear! I didn't think I was worried, but I was a little teary and felt like I'd been holding my breath when they called with the offical all-clear. Dec 31 will be two years of finding the lump. Glad to hit another milestone.
Fluff, your trip sounded incredible! We are going on a Caribbean cruise over Christmas. Not thrilled about the Christmas part, because my married daughter and her husband can't come., but anxious to get away. So stressful at school this year. One great principal and one that's horrid. My husban and 17 year old son left this afternoon for the Big 10 Championship in Indianapolis so I have the house to myself until Sunday. Hope there aren't any Wisconsin fans out there-if so, hope you are ready for the Huskers to win-haha!
My DH decided to bring down EVERY SINGLE XMAS BOX from the attic and thought that would be helpful for me. He put them in 3 different rooms because he didn't want to stress me out. Seriously? I'm stressed just thinking about them! But I have Pandora on the TV and if I ever get off the computer, I'll do something. But I'm not going to put up everything. Seems silly when we'll be gone for a week. Going to Billy Elliot in Omaha with a friend since hubby will be gone.
Lily, sure have been thinking of you lately. Hope you are able to be with your brother and still take care of you-clearly a difficult time for all. Prayers for all you.
Here's Romeo and my baby, Gracie Lu ...I get a kick out of all your puppy poses!
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Hello all-I guess we are all coming up on that 2 year anniversary-gosh time goes by so fast. It makes me so happy to see so many in good places in their life. I love reading about your lives. This is such a positive thread for me to come to. many of the threads I read are pretty discouraging. I am always thrilled when I see there are new posts in our group.
I am 4 weeks out from my last Taxotere-YAY ME!! The taste buds are starting to come back, my feet are regaining some feeling and I am not so dang tired. I had my first tx with just the Perjeta/Herceptin this week and so far so good. Usually with the tax included I would be miserable by this time. It is so sad to read how many are still being denied the Perjeta because of insurance. Mine finally got approved several weeks ago-after my bill at the onc office was up to $240,000. My onc was going to pay if they didn;t -so glad they came thru. My brother is being seen by my doc also-and he has no insurance-so I would have felt bad if they were supporting both of us.
He is a typical male-you know how when a guy gets a cold or flu and they think the whole world stops? And when a woman gets the same thing they still work and take care of their families and don't expect any help? he is on oneof the mildest chemos there is but he has completely fallen apart-when I tell him the women on Gemzar are working full time and living life he says they must be way tougher than him-and i just agree with him. He has no coping mechanisms at all-I am trying to be supportive but he needs to pull his BGPs (big girl panties) up and get on with it.
I am going to enjoy this gentle regime I am on for now and hope for good results in the upcoming scan. This is the best I have felt all year. 4 different chemos in a year is rough because younver setle into a routine. I originally was going to eat my way thru Dec with my new tsate buds and worry about it in Jan but after looking at my cream cheese lumpy pasty body in a full length mirror I have rethought my plan. I have signed up for Aqua Zumba and started a Yoga class instead. I hear you cheering for me Maria!! I will start some gym stuff in Jan when there isn't all the holiday activities going on.
I hope everyone is enjoying their weekend. I am going to the attic to start getting some holiday stuff out-a little glitter is good for the soul.
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Husker - the pix is adorable of the puppies!!! THey look like little buddies! Christmas cruise sounds wonderful! Enjoy!!!! By then it will be knee deep with snow around here and I will be jealous.
Lily - I am glad you are done with one chemo and on to the next. You are knocking it out. And YES - I am really cheering about the exercise! Wish we were closer - I would workout with you!!! I love the yoga - I am addicted. Now I go 3 days a week at least. I look forward to it. My flexibility has increased a ton and it really helps keep me calm and relaxed. I feel like a different person with yoga. I am glad your insurance finally agreed to pay for chemo. It's so not fair that with all we are going through we have to fight with our insurance companies. I had to fight with mine when they refused to cover my exchange surgery and sent me to collections....can you believe that???? They kept saying "we don't cover cosmetic surgery". I wanted to reach through the phone and beat the crap out of her and say "cosmetic surgery my S^&*(!!!!" It took months but I finally got it straightened out but it was stressful and emotional for sure.
I can't believe we are all approaching the two year mark. I had a scare this week - found a lump in R arm pit/side of my foob area which was the cancer side. I had an appointment with my MO and he could not really feel it but he believed me because I said I felt it in the shower. He said "that is the best time to find stuff....that is good enough for me so let's get you an U/S immediately". He sent me right down to the breast center. It was a very bad deja vu! I freaked. At least the radiologist came in and gave me the "all clear" results right away. I headed to yoga to decompress.....it was too early for a cocktail! It was only 11am!!
As we approach the two year mark and upcoming holidays it's a great time to think about all that matters. Life IS good even with BC. I cherish every day and have found a very happy place with my new life here in Chicago without my career. I am truly happier than I have been in years. Sometimes I feel sad that it took BC to find this in life, but I still cherish what I have found. I am thankful every day for each of the wonderful ladies here that have helped me and supported me and most of all made me laugh through this a little. Thanks girls! You have no idea how often I think of you all and pray for you. I hope the holiday season brings happiness, peace and most of all GOOD HEALTH to each of you!!! Hugs!
I think we need to open a bottle of champagne - or my favorite - the Italian version called Prosecco! Cheers!!!! I am putting the song "We Are Family" in the juke box now!!!
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Hi friends, it is so encouraging to hear from everyone as we get close to the 2 year mark. Sometimes I go back and read a few of the old threads to remind myself how we felt,it makes me realise how far we have come.
Colodisneylover - Interesting about the food and Lymphedoema, I have not been able to wear my sleeve for a while as it puts pressure on my right wrist which is getting quite painful - I should be eating healthy anyway so I will see which foods affect it.
The wrist is an Arimidex side effect - I am trying high doses of fish oil at the moment to see if it helps. Its bizarre. I can box, as long as I keep my fist firmly clenched and my wrist straight, but can't turn on a tap.
I have realised people will say almost anything - some are so nosy. The one I dislike most at the moment is - "So is it all gone, do you have the all clear" - what do they expect me to say? It doesn't bother me now though - its just how people are.
Husker - so glad your 6 month was all clear. I saw Billy Elliot in Melbourne - it was wonderful!
Lily - we are all cheering the exercise stuff - I am sure it will make you feel good. Glad they have paid for your treatment, I guess the thing with your brother is sort of normal.
I can remember me and DH having really bad flu one christmas when the kids were small. I was cooking and cleaning and playing with the kids, he was lying on the sofa moaning slightly. His comment was "I must have it worse than you, or you wouldn't be able to do all that stuff' ! Don't you love them.
Maria - scare must have been ghastly , but so glad life is good for you. You have been a rock for all of us over the past 2 years.
So yes lets celebrate! Have a great Christmas - you guys in the snow and me in the swimming pool (still can't get ued to Xmas at 100 deg)0 -
Lily- I am so glad you are feeling good. I hope the scans come back good. It sounds like this new treatment is promising, and I am hoping the best for you.
Maria- I am so sorry you had such a scare. I had to have a mammo and ultraound last month, and just being back on that table for the scan was so awful. I hope that the report of 'nothing' really gave you some peace of mind.
Husker- I hope you got all your decorations up. Your dogs are adorable. It looks like they have become fast friends.
colodisney and penny: So it is indeed lymphedema. She says it is a mild case and that, 'given your health, weight, and exercise level, I don't think it will get much worse.' Unfortunately, she used the EXACT same words when I saw her for prophylactic assessment, saying that I wouldn't GET lymphedema!! My arm feels much better, but my hand is what is painful/swollen. I am going to see the therapist to re-learn the exercises I never did and to learn to wrap. She hopes I can get it well under control in 3 months. Do you guys wear your sleeve/gauntlet daily? I have one, but I am clearly going to need another.
colodisney, good tips on the foods. I told my DH that unfortunately even this condition suggests a careful diet. GRRR. Tired of that
I hate when people ask about the sleeve. Often, they assume it's carpal-tunnel, so I just let them go on assuming.penny- enjoy your sunny, warm Christmas. I lived south for a while, and I actually liked the novelty of a warm (tho not as warm as you) Christmas. I loved the Christmas lights on the yucca plants.
Yeah for all of us for two years! While I hated re-living the scans, etc., I can honestly say that this December 1, I felt more like celebrating than mourning. Wishing the same for all of you.
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Catching up on the posts..can't believe it's December in Minnesota...NO SNOW on the ground and unseasonably warm but have managed to decorate the outside of our house with lights and the tree is up...trying to get in the holiday mood. As part of our pharmacist responsibilities at the hospital I work at, we interview patients who are admitted to get a list of medications/doses they have been taking and enter them in the computer system for the MDs to do their admission orders. The other evening I talked to a young woman (40's) who had been admitted for a prophylactic bilateral mastectomy (family history) with the surgeon who did my surgery...I could tell she was nervous and I SO wanted to tell her my history and congratulate her on her decision...lab, RNs running in and out of the room so I didn't have a good opportunity but I have promised myself NEXT TIME I will definitely say something.
Happy day for this proud mom...my older daughter passed the bar in California (50% pass rate so we were hoping for the best) and today she got a job offer !!! Definitely starting at the bottom of the heap but it's an excellent firm and the experience will be wonderful. She has had her heart set on Entertainment Law since starting law school in L.A. so I am so glad it worked out for her. Younger daughter graduates in HR/Business communications this month so she's in the job search mode too. My babies are growing up !!!
Can't believe we're all close to our 2 year anniversary
...I will definitely be celebrating. Good to read posts from you all and hear that you're doing well..0 -
Stilts - you must be so proud of your daughter - what an achiever!
Maxine - my lympdedoema is mild, but initially was quite painful. I wore a sleeve all working day but took it off at night, and did lots of stretches throughout the day. In the evening I would take the sleeve off, but keep my arm raised on the back of the sofa. I also did daily massage. After about 3 months my arm was near normal size. I have occasional flair ups when I go back to wearing it all day, but otherwise I wear it around half the time. I probably should wear it all the time but my right wrist is painful (Arimidex) and I find the sleeve makes it more so.
I bought pretty sleeves from the people at www.lymphedivas.com
People do comment but I just tell them I have an arm problem. I have not cut back on any exercise - I still do boxing and weights, I think its fine as long as you do things your body is used to. If you do something new introduce it slowly.
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Hello ladies I have been MIA from the boards! I cannot believe our 2 year mark is just around the corner. I hope and pray each of you are doing well! Merry Christmas and Happy Holidays!
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Having a birthday and it is 12/12/12. I love it, and am glad I am here to see it! Not sure you can se my dog in my avatar picture, but I wrestled him into a winter hat out fit with ear flaps and a scarf. My son thinks if we gave him a gun, he would look like Elmer Fudd chasing wabbits.
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Fluff - happy birthday! I turned 50 on Monday. I'm also glad to be alive and kicking! We Sags are special IMHO - lol!!
I'll catch up on everyone's updates soon. Hugs to all. XO0 -
Happy Birthday Silia and Fluff!
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Happy Birthday girls!!!! Wish we were all toasting up a nice birthday cocktail together!!! Anyone ready for the holidays? I got my house decorated and the shopping done. I have to start wrapping presents. I guess I am kind of ready.
Wishing you all a great holiday season! It's so much better this year than 2 years ago!!! Yesterday was 2 years since my diagnosis was confirmed. I can't believe it! Life is really good now! Never thought I would get here or say that:)
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Happy Birthday Fluff and Silia! I willbe fifty on Jan. 8. That is funny that we are so close in age. I am trying toner easy for the holidays. I am embracing on line shopping for the first time. Put the tree up and decorated last week, even started wrapping gifts tonight.
It is wonderful hearing all the updates! I love the doggie pics too. Wish I could post a pic of my new addition, but can't from an iPad. Lily, you sound great! I am sorry your brother has a tough road. I am sure your example will help him out. Always thinking of you and sending good thoughts that tx will be gentle and effective.
Love to all. Kay0 -
I am decorated, done shopping with the exception of a couple things, all is wrapped. Now, I have to go through the house and clean up after myself. I left a mess!
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Happy birthday Fluff and Silia! And Kay, a big milestone coming up for you! Wonderful to celebrate birthdays, isn't it?
Stilts: Wonderful for your daughter. Congratulations, you must be very proud!
I am not ready for the holidays, but I have definitely toned down my anxiety around it. So, hopefully I will get a little motivation to make it fun for my kids!
Kay: I LOVE online shopping. I have never even liked shopping a little bit, so sitting on the couch on a Friday evening and completing my shopping is the new standard in my life.
Penny: thanks for the info on lymphedema. I learned how to 'wrap' my arm for the first time yesterday and wore the wrap all day. By bedtime I was in so much pain I had to take it off (which took 20 minutes). Colodisney: I am so impressed that you have such commitment to wrapping. I hope it gets less painful. My physical therapist wants to do 6 sessions, have me wear the sleeve every day for a few months and wrap every night. I have to say, the pain and swelling in the hand have gone WAY down, so I am hopeful that we can get it to very manageable.
Is the Arimidex-related wrist pain due to achy joints? I am on tamoxifen, and one of the SE is joint pain. I am sorry you are having such a hard time with it.
lily- I hope all is well with you and that the new chemo is treating you better.
I hope all the puppies are doing well! I will raise a glass to all of you this holiday season. Two years and we are all going strong!
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Happy Birthday to you young gals!!! I am only slightly ahead of you. I will have the milestone 55 next year.
I hate to hear about the lymphedema. It was one of the first things I read about when I was dxed. It is why I wouldn't allow them to take any nodes. Feel like I dodged a bullet. I was actually more scared of it than re-occuring cancer. There are trials going on right now where they transplant nodes from other areas into your damaged areas to get things flowing agin. I think the lady doing the pioneering of it is in Europe.
Scanning on Monday-next tx and results on Tuesday. Trying not to freak=it is the best I have felt in the almost 2 years we have been doing this-that makes me nervous. My whole life could change again on Monday. He did argue me into scanning before Xmas but I told him if it isn't good I am not changing drugs til after the holidays. No reason to not believe it is working--but I feel so normal-lots of energy, sleeping good, getting physically strong-seems too good to be true. Sept scan was so good-and I have never had 2 good ones in a row...I will let you guys know how it goes
Just doing the Perjeta/Herceptin seems to be a piece of cake. Still have to deal with the Big D but that is minor crap (ha ha)
Haven't put up a real tree yet. Went for an old timey awesome silver tinsel tree. I know you are thinking-she didn't seem like the truly tacky type but everyone who sees it thinks it is cool. I still need a real one though-I have too many ornamnets I want to put out. AToo bad the cat is eating the lower limbs and puking it up. I hate shopping but I will have to get busy this weekend.
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