March 2011 chemo-lounge
Comments
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2 year Breast Cancer Survivor today !!!...hugs to all my BC sisters !!!
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Congrats to you, Sue (Stilts)...we are all quickly approaching our March chemo anniversary, but I much prefer the date that we were cancer-free. Chemo/rads just was extra insurance to keep it away! My diagnosis was Jan 14 and surgery date is Feb 3. I use my surgery date as my cancer-free date. I had to look on the calendar to be sure. Somehow the date I found out looms larger than the better date of cancer-free; probably because it was so traumatic.
As a triple negative (and clinical trial participant), I am still being seen by the Onc and BS. I ditched the RO in November. Seemed silly to see all three every 3 months, although RO insisted it was protocol. I have not known anyone else to go that frequently and for such a minimal appointment. So I was a no-show for my appointment (should have cancelled but never got around to it) and they never called since to see where I was or if I wanted to reschedule. Surgeon told me I could go down to one doctor every three months instead of two and he didn't care if it was him or Onc as long as I got a thorough breast exam. He is the most thorough and at a breast center so that's ALL they do and all they see. But the Onc is much closer and I feel some obligation to see the clinical trial through.
I am almost six months into the Rural Health for Women study out of Univ of Kansas-the weight loss program for post-breast cancer women. I've lost 22 pounds and will start maintainance soon. I would like to lose more, but this has been a very healthy, practical way to do it so I am trying to be realistic!
We went on a Christmas cruise with middle daughter (22) and son (17). First time I haven't been with my parents, sister or oldest daughter ever so that was an adjustment, but they all came on New Year's Eve. My daughter reminded me that as long as we were together it didn't matter what the calendar said. Smart girl, that one. And I gotta tell you, being on a beach on Christmas Day is pretty sweet!! Picture is at St. Maarten.
Lily, I think of you often. Have you rocked the hats yet? Hope you all continue to celebrate anniversaries of all kinds!!
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Huskerkkc, this photo is absolutely stunning. You look amazing. It is so fabulous, I just keep looking at it. It sounds (and looks) like your cruise was perfect. Oh, I just love those Santa hats, too!
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Two years for me as of the 22nd. That was my third biopsy where they found and removed it all with clear margins, so I consider that my NED date. I have a harder time with the survivor word as I see that as something you have conquered and I am not sure I will ever feel secure enough to use that. I would feel like I am jinxing myself.
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Just this weekend I thought I needed to send a hello and then the flurry of postings started. Stilts, congrats on your anniversary. Husker, St. Maarten is awesome -- so glad you and your family enjoyed it! My 2013 is off to a nice start, I'm happy to say. Look forward to hearing updates from everyone else. Sending hugs!
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Two years ago today I had my BMX....hard to believe.
Husker - love the pix! Wish I was on that beach right now...Chicago has been COLD! It was -3 degrees one morning this past week!
Congrats to everyone with the cancer free anniversaries......hope you are all well.
Lily - any updates on your progress? Thinking of you
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Congrats to those who are celebrating anniversaries-funny which particular dates mean anniversary to us. I always think of the day my idiotic family doc called me at work to say "You have cancer and it is really really bad" as my day it all started.
Kristy-not sure which I envy you the most on-the wonderful weight loss or the beach at Christmas. What a great picture. I am so glad you had that special trip and got to see the whole family at New Years.
I was in the chair today for almost 5 hrs. Back on Taxotere along with the Perjeta and herceptin. It was my 2nd one with the Tax added back in. Not much of the hair left again. Mostly bald on top=still some left on the sides and back. Got the hugely annoying folliculitis-all 3 times I have lost my hair this has happened. it makes you glad when it does finally fall out so it won;t hurt as bad. First tx did not go well-I got every SE that I have never gotten before. Wonderful acne rash all over my face and vomiting-enough that I dropped 9 lbs since last tx. Wierd thing is I don;t feel sick but almost every night all of a sudden it is like projectile. I don't feel it coming on and I feel fine afterward. I haven;t puked in the whole 2 years-not sure why it is getting me now. I didn't miss any work as it was happening in the evening. It has messed with my potassium so I have started back on those giant horse pills. The cramping was getting pretty bad.
I think I told you my onc was trying to give me the QOL talk and trying to convince me to reduce my dosages-told him I am not interested at this time-so I think the Gods were laughing at me and blessed me with all the good SEs they could come up with. He asked me again today-he said I know what the answer is but I have to ask. Told him I was interested in not doing the Neulasta this time-we bargained it out that I could go without but have to go for bloodwork next week. My numbers are good so thinking I should be fine. I have had some issues with fevers due to low counts but not for a while now. The Perjeta can cause that. I will be scanning in early March. Good results=more Taxotere. Bad results=TDM 1 if available and if not Navelbine is next up.
I actually feel really good and am doing normal daily living. I am working between 50-60hrs a week right now-figure I better make it while I can. I am cooking for my folks 5 days a week and doing a couple of exercise classes. So Sunday is my catch up on sleep and be a couch potato day. It is really a grind-2 years of chemo every 3 weeks-even if you don;t feel all that bad it still wears on you. It has been bad days over on the Stage IV threads so I haven't been on much. We have lost some dear people-great posters and inspirational. It's like they are posting then next thing you know you haven't heard from them and then someone in their family is posting saying they aren't doing well-or have went into hospice and then boom they are gone. So many getting bad scans-good news has been scarce. And the number of women joing the IV threads daily-and they are so needy. You write them encouraging stuff and try to be positive but day after day you just get numb to it and think OK maybe someone else can be their cheerleader today I just can;t do it.The reality is all of us might win a few battles but we are losing the war. Less than 8% live to see 5 years....
So celebrate those anniversaries and take care of yourselves. I can't imagine ever being able to put it behind you-it would always be lurking there but it pleases me to no end to read about the trips and plans and pets and kids-just normal everyday life. Not the worlds most uplifting post I know but you are my peeps so I now you understand
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Lily I am sorry about the losses on the Stage IV board. It is so hard to hear of more good people being taken too soon from BC. I just continue to pray each day that there is a cure or at least more advances until one is found. The medical and pharmaceutical world moves way too slow for many of us BC girls.
I am glad to hear you are feeling OK despite being back on chemo again. By all you are doing it sounds like you have lots of energy even with chemo on board. I hope the next round of chemo brings you less side effects...especially less puking! SO not fun....
It's OK not to be everyone else's cheerleader. BC is all consuming at times and you need to save that focus and energy to put on yourself so you can manage what you need to as you move forward. It doesn't mean you don't care about others, you just need to put yourself first now. Don't feel bad about that..... sending hugs and prayers always.....
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Congratulations to all you ladies having their two year anniversaries. I have been out of contact for a while - we have been camping on the beach in Tasmania and have now made it into Hobart for a much needed shower.
Lily - I can't imagine how you are managing to carry on working all those hours with your side effects - you are amazing. So sorry to hear about the stage IV girls. I guess I do the trips etc for 2 reasons, to make sure I don't waste any of this marvellous life while I have it, and as a form of denial, in an attempt not to be thinking about it all the time.
Huskerkkc - you look great - lovely picture
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Lily....you work too much! Take time and enjoy. That is the one thing I learned out of all of this. While I was working 60 hours a week at a job I loved, everyone else was having a good time. I hope your new drug combo is working.
And do not be concerned about the cheerleader thing. When I was diagnosed a friend came over during my bmx recovery. At some point she asked me how I would use my situation to help others. All I could think of was how I was going to help myself get through everything without losing it. You take care of yourself. There are plenty of us around to help others.
Penny...we think alike. I just flew to California to close out my daughters apartment as she is in NYC for fashion week and can't be there. My son Flew out to meet me and we drove her car cross country to Indiana. I was not particularly excited to drive a car that far, but it turned out to be fun and the whole time I thought if something happens to me, this will be a memory for him that he will always have.
I plan to spend every penny I make traveling and having fun with as many people as possible. I want to leave no regrets no matter when my time comes or what takes me.0 -
Hey girls,
Life is good for me-I just got too caught up in the sadness that has been predominating on Stage IV and spewed it out on you. Looking forward to spring. These are the things I am going to try to do.
1-Paint my bedroom something like turqouise-or creamy something with lots of turquoise stuff. My bedroom is 35 feet long-big paint job. I just want that cool springy beachy feel-without the beachy trinket thing. Trying to find a new quilt before I decide on paint. Also might be a big TV purchased for up there.
2-looking for a used convertible to drive me and my doggie around this spring/summer. Budget of $5000. I have missed out every time. If they come up and they are a good deal they go really quick. I have learned enough now that the next time I might be more successful. Trying to get that done this month because the prices go up once it gets nice.
3-booked a Florida Vac for me, my mom, sis and niece for Memorial week. 3BR/3 bath house with a private pool right on the beach. House is only 2 years old. Place called Anna Marie Island. Plane ticket prices suck but NOT driving.
4-Have asked my doc about "sicking" out for the month of May. This would be provided everything is going well. That way I could get my gardens in and have fun my favorite month of the year. He has no problem with it-he has said I am the only one he has working full time and doing the drugs I am doing. He will write up whatever I ask.
5-finish the last room in my house from what has been a 20 year remodel. My library is still just a shell and it is the first room you see when you come in my front door. I don;t think my brother will ever be able to finish it. he is the one with the lung cancer. He was admitted to the hospital yesterday-it isn;t looking good for him. He looks like hell-doesn't sleep or eat just naps off and on. Doc doesn;t think he can do much more for him. Trying not to think about it.
Penny, I looked up Tasmania on the map today and googled it to see what it looked like. I will live that trip vicariously thru you. Never really been camping but suspect it wouldn;t be my bag. I do love the outdoors and hiking and all that stuff but at the end of the day I want a shower and a soft bed and some food that someone else has cooked.
Fluff-you just did like that movie with Barbra streisand-she drove cross ccountry with her son-only I think she embarassses him at every opportunity. I think you are too cool a mom for that to happen.
As far as work goes-it really is a 2 edged sword. I need to work as many hours as I can while I feel good to support myself when I can;t work. It would be great to be off when I am feeling good but without that security fund built up I just can't rest easy. I only missed 3 months last year but was 40hrs most of the time because of the chemo I was on-can't really save much on that schedule. If I get lucky enough to get the TDM1-they say it is a breeze for SEs-I am hoping not to miss anything but when I want to be off. I have at least one more tx with the Taxotere to get thru before I scan to see where we are at. Almost hope it isn't working because it isn;t much fun to be on.
Traveling much just isn;t possible with my parents needing so much done and I am OK with that. My day will come. My siblings have stepped up but things get so messy when I am not there. just the logistics for being gone a week make planning a trip so stressful.
Thinking good thoughts for all of you
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Lily....not only did we live the trip, but we ate at the same restaurant that the scene in the movie is modeled after. It is called the Big Texas Steak Ranch and it is hilarious, with pretty good food. But the table for the steak eating attempt is there with the time clock and everything.
We just got a new young female dog to keep Harry company. She is on a two week trial. If she stays, she will definitely be the alpha dog. She has a lot of terrier in her and is very feisty. We tried to get a different one last week, but she was too tiny and dainty for him. He kept knocking her over, so we decided he needed a slutty dog, not a diva good girl. To that end, we have named her Rizzo, after the loose girl in Grease. We call her Izzie for short. They are running in huge circles round my family room.0 -
Hi ladies- Has anyone had a hysterectomy? I'm sorry I can't remember who has and has not. My oncologist is recommending I get one. I would like to know how long your hospital stay was, your recovery time, pain level, restrictions, etc. Also, did you have both the ovaries and uterus removed or just the uterus?
I'm having problems related to the Tamoxifen.
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I havent had one. I am convinced that is one of the reasons I had BC. I was 55 and still having regular periods. I do have fibroids and asked my ob/gyn about a hysto. He has opted to monitor me while on herceptin every six months. Says I have been through enough surgeries (9 or ten) in the last two years and I need to have a break.
From what I have read on my triple positive thread, it is all across the board. Some have, some havent, some just ooph, some the full thing.
If I had one, my doc would have done it via laparoscopy if possible. Said it is much easier. I had two csections, so he said until he saw how all the scar tissue was in there, it would determine whether he could do it that way or if he would have to do the full incision.
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No on the hysterectomy but I have to get an oophrectomy next month......boo! Not excited at the thought of another surgery. They are doing it by laproscopy if all goes to plan. I don't have to have uterus out though. I have had a C-section though. I was not able to drive for a few weeks and I was not able to lift anything heavier than 10 lbs for a while. I was back to the gym at 7 weeks after and back to teaching aerobics 8 weeks after. When are you having your surgery? Has anyone else had ovaries out on here? Just curious. Once they are out they will switch me from tamoxifen to an AI. Joy....more med changes.....I hope I don't have lots of side effects. Crossing fingers.....
Hope you are all well. Expecting a snow/ice storm tonight here in Chicago. Oh how I long for summer again......
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You poor things - having to have more surgery.
Maria - Some people seem to get AI side effects, normally after about 3 months of taking it. Most are normal menopause symptoms like hot flushes, problems sleeping which I guess we all have to cope with sooner or later anyway. There are people who get joint problems - my main one of those is my wrist - seeing someone next week but don't think they can do anything. My advice would be to (if you don't already) start lots of fish oil (my onc said 8 a day!) and maybe glucosamine when you first start taking it. I waitied till I got symptoms but I fugire if you start immediately it may protect you a bit
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Penny - thanks for the advice. I am worried about joint aches especially since I love to exercise so much. I hope it works out. I am trying to get my surgery done in the next two weeks if possible. I want to get it over with! Then I get to move on and schedule my colonoscopy! Yipppeee! I really know how to have fun don't I?
I hope you are all doing well....can you believe in another week it will be TWO YEARS since we opened the lounge? Business has really gone down since it opened (LOL!)....which is a good thing! We are all out living our lives - not sitting in the lounge talking chemo crap.
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Lily.....new drug approved for your arsenal! http://www.fortmilltimes.com/2013/02/22/2512840/fda-approves-genentechs-kadcyla.html
Mdg, I will be switched to an AI in a couple months also, and then he makes me have a prolia shot for prevention of bone loss. Not such a fan of that, since I am still normal, but we will see.0 -
hm...thought I posted my message on here a bit ago, but see that it's not listed...gosh, maybe I stuck it at the end of some other post, lol.
hey gals!
I saw mdg's post today, and here's what I said:
About the time I began chemo, I purchased a very pretty notebook. In it, I wrote loving and kind words and thoughts to my son. It filled a number of pages. I stuck it in a drawer meaning to get back to it and write more, and time went by.
Just the other day, I finally pulled out the notebook, and just looking at that first page with the date on it simply amazed me that it's been TWO years since this all began. Even tho I know that, there was something about seeing my own handwriting from two years ago that made such an impression on me.
All you chemo lounge ladies helped me through it. I hope all is well with the whole group. God bless.
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And truth be told, I don't even think about those chemo days too often. The past two years have been pretty full, yes, ups and downs, but many good times. Once in awhile, something will jog my memory of that time, but if someone asks me specifically what I did or felt or experienced, I really have to sit down and give it some thought. Too busy living in the present moment!
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2 years ago today since your first post Maria - so glad you did - how much harder would it have been without all you ladies
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Can't believe the lounge has been around for two years! I'm so glad you ladies are all still checking in here and thank you for being such a great support!
Met with my oncologist yesterday. I just needed more info on the hysterectomy, I am the type who likes to ask questions until I am blue in the face. A phone conversation just doesn't cut it for me. Tomorrow I have an appointment with the gyno for more questions and hopefully get it scheduled. Of course I want to squeeze it in after spring break (anyone have any good Florida beach recommendations?) and before summer break because I don't want to have two young kids bored out of their minds because I am on restriction or too sore to do anything fun!
I had quit reading a lot of the BC stuff for a while, but did start researching again when all of this came up. I'm sure a lot of you have already read about Tamox being extended out for 10 years instead of 5 now. I asked my oncologist yesterday, and he said he wasn't going to bring it up but yes, he is now recommending 10 years on it.
My BFF and I were going to have one heck of a vacation when I hit that five year mark and got off that stuff, so I think we'll still do it and make the party and vacation even bigger!0 -
My MO is probably switching me to an AI after my oophrectomy. He said there is lower recurrence rates an AI in post menopausal women than tamoxifen. I guess I am officially going to be post menopausal. Right now my gyno did blood tests and I appear to be in menopause, but after surgery I will definately be in menopause. I hope I don't get side effects from the AI......I have finally accepted the side effects from tamoxifen. I just hope it doesn't get worse.....
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So glad we are all here after two years! I will be switched to an AI in a few months also and am plenty worried about the se's. My onc does a Prolia shot automatically with the AI, and Im not thrilled about that either. I dont currently have joint pain, and I am thinking I will. Right now,, the worse thing for me is horrendous hot flashes, and they occur in the day, which is even more embarrassing. Ive tried different times taking the meds, etc.
So, I am anticipating joint pain AND hot flashes. Should be fun.
But I am here and having a great time with life!
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My hot flashes are alot less if I stick to the Anti Cancer diet. When I go off it - way more hot flashes. I am not familiar with Prolia....don't know anything about that.
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Lily - I hope you're making headway with your To Do list (convertible, vaca scheduled, etc.) LOVE your idea to take May off for your garden - brilliant!!
I can't offer suggestions for the surgeries, Colo and Maria, but I wish you both smooth sailing.
I've been "menopausal" and on Arimidex for exactly a year now. I don't get the Prolia. I didn't want it and my primary doc is integrative (Western and Eastern) and he recommended I take a supplement called Bone Restore which my onc approved of as an alternative. I take 5 a day (3 then 2). Hoping it's working on my bones!
Fluff, did the new dog pass probation?! Hoping so. We have 3 dogs and I'm sorry to say our oldest, Waffles (14) just died last week. It was nice that he died on his own and we didn't have to make that decision... Anyway we're all in a bit of a funk -- he was the center of this household -- a BIG personality.
I'm so glad we all stay connected 2 years later. Maria, thanks so much for bringing us together. Sending hugs. We need music on the jukebox but I can't think of anything. Anyone?! Kay, you always have good selections...
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MSG, Prolia is for bone density. It is a shot that lasts six months, instead of a pill, or reclast, which is an injection. My density is still normal, but it has dropped some.
Slia, I am going to check out bone restore. The new dog did not pass the two week test. She was sweet and reasonably good natured, but....after two weeks of working extensively, she was not potty training. Se would go outside or inside, whatever struck her fancy. And she dug. A LOT. I took her to my vet who said she believed she had a fair amount of Jack Russell in her, which made sense because she was always "on", rarely rested. As much fun as Harry had with her, sometimes he looked at me as if to say "make her stop." Lol. I was all set to keep her, and then got up the next morning to see the $60 bed I had just purchased was shredded alllllover the floor. Stuffing everywhere. And she had pooped and peed. I let them outside, and she immediately started digging feverishly. I took it as a sign, and returned her.
She will find a home quickly and will be a great dog. She just needs a lot of work and time. We were so lucky with Harry. Short of eating mulch, he really doesn't have a vice. Rarely barks, was housebroken, good natured, rides in the car great, funny and loving. I need a second one of those to fall in my lap. My son is buying a house and wants a dog in the worst way. I am sure I will be the go to for babysitting.0 -
For the jukebox, how about Here Comes the Sun by the Beatles. Spring is around the corner and we are looking forward. In fact, I was thinking I would use "forward"as my word for the year. I'm not a fan of warrior and survivor, etc. I am too superstitious and feel like I am cursing myself. Like Robin Roberts mom said, "when you strut your stuff, you stumble." Lol, I want to fly under the radar.
Here comes the sun
Here comes the sun, and I say
It's all right
Little darling
It's been a long, cold lonely winter
Little darling
It feels like years since it's been here
Here comes the sun
Here comes the sun, and I say
It's all right
Little darling
The smiles returning to the faces
Little darling
It seems like years since it's been here
Here comes the sun
Here comes the sun, and I say
It's all right
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Little darling
I feel that ice is slowly melting
Little darling
It seems like years since it's been clear
Here comes the sun
Here comes the sun, and I say
It's all right
Here comes the sun
Here comes the sun
It's all right
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Hey girls...just noticed there is a March 2013 chemo group. I just popped over and offered some encouragement. If anyone else wants to do that - I am sure they would appreciate hearing from us experienced girls. I remember all too well what it felt like 2 years ago - and it wasn't good! Thank God for each of you that helped me get through it!!! Hugs!
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I haven't been on much lately and it is so good to read all your stories and know that regular lives are being lived and fun is being had. And as always to keep current with what's going on with the medical side of things. The whole menopause thing--most of you are younger and I hate that you have to do it now. I was done with it before I got cancer and it was hardly noticeable. However my girlfriends who were going thru at the same time weren't as lucky so I got firsthand looks at how miserable it could be. Funniest part would be at group gathering when one would start to flash the whole group would be sweating in short order.
Back to why I haven't been on. My big bro, who was dxed with lung cancer at Thanksgiving, died last Friday. He lasted almost as long as they told him. Most of the last month was in/out of the hospital and then the last week in Hospice. All I will say is that it is a horrible way to die and he was so scared and so unprepared and I will never get the sound of him trying to breathe out of my head. There was no peacefullness to any part of it. He died 1 day short of his 56th Bday. He and I always butted heads--but we were really close. He was a really good big brother most of the time. I am almost exactly 1 year youger than he was=I will be 55 on Sunday. I really miss him-even the annoying parts.
Let me tell you a funny thing about him. He had always relentlessly believed in Publishers Clearinghouse Sweepstakes. I don't know if you have ever filled out their contest forms but those things were work! He would fill them out for the entire family. We all saved them for him. He was so certain that one day the van with the roses, and champagne and of course the big cardboard check were going to be at his front door. Funniest part is he was such a cynic about everything else but he was sure THEY were legit. I would always tell him they had a special garbage can for his entries since he never ever ordered 1 thing from them. It must be their contest season because they started advertising on TV last night. That is what made me want to tell someone this story.
The day we moved him from the hospital to Hospice they admitted my youngest bro to the same hospital. The damn fool had gotten the flu and couldn't shake it. He puked for 9 days and ate bottles of Tums. He managed to destroy his own kidneys. He finally went to the ER. He was so dehydrated and had put so much calcium in his system with the Tums that his kidneys just quit working. (Turns out the Tums eating had been going on for quite a while too). They took him straight to surgery and installed a dialysis port. They ran tons of fluids in and were doing dialysis daily to try to get his numbers down. After 6 days he started peeing on his own but the kidneys are not filtering. They did a biopsy and all that calcium has encapsulated them with a hard crust. They are not sure where they are headed from here with that news. He came home yesterday after being in there for 15 days. There is still some hope that this can be reversed. He is only 40 and he is scared he won;t work again which = losing his house, 2 kids quitting college. multiple car payments ect. I could kill him. He is a total numbskull about doctors-he has a few other health issues -which are also serious-that he tries to ignore but maybe he has finally learned his lesson. Little things become big things if you don't pay attention. He is the sibling I am closest too-we share many interests-but I had earned a long time ago that trying to push him on the medical stuff just gets you ignored and pushed away.
On my own front I am getting scanned tomorrow. I have done 13 tx with Taxotere involved in a row. Those of you who were on it can remember how much fun that can be. I am well sick of it and hope that the scan is bad enough that I can move on to the new Her2 drug. Tax has been a good cancer fighter for me but it has me pretty beat up right now. I will let you know when I get my results. Probably not til next week as I am going late in the day. I just want some food product of some kind to taste like it should. Depending on where I am in the cycle it goes from putrid to horrible to cardboard. Now I can do cardboard but it that's the best it ever gets you just don't bother to eat that much.
Since a big part of us are midwesterners and we have had our share of crap weather in the last couple of weeks I sure appreciated the Jukebox selection Fluff. Spring needs to get here soon. I alwsy do so much better when the sun shines. Mayb Penny can describe one of her summer days to us-I think she is in summer now.
Thanks gals as always. My thoughts are always with you-you are my original and best BCO peeps.
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