Starting Chemo in Nov. 2011...anyone else?
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Grandma V - hope everything goes well with your scan. It's makes us so fearful to wait for anything. I am still wondering how I will know if it has returned. I have aches and pains and when I go to my PCP, everything is fine. I see my onc on 10/16 and I will have my list ready. I have several lumps and pains on my right side but I like to think it is because I am doing Zumba Gold or at least I try. I really cannot dance. There is a huge mirror in the exercise room. On my way up the stairs to that room, I am so tall and slender. I have a flat tummy and I see my abs and not an ounce of fat is on me. Then, I walk in the room standing so tall and look in that mirror and see my Mother!!!! I want to ask her why she is in the room with me. OMG, it is really me and I cannot dance! I have a lot of fun and try to dance with my eyes closed. Doesn't work too well. Still gonna do it as much as possible!
I hope you dance too. I hope you dance in the rain, sun and anytime you can. Praying for more good days My Friends!
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Hello my sisters, long time no post. If u have FB, PM me cause I post updates there more often. Been so busy with family, treatments, and surgeries. Finally finished my brain radiation last Tues, also got CT on same day to do radiation on spine and appendix, cause they have been most painful. A few hrs after I got home, I get a frantic call from my radiation onc telling me, I don't have a tumor in my appendix, but rather have appendicitis. He told me to go to the nearest ER before it bursts! I went to my local ER, where they confirmed it was indeed appendicitis, so I had an appendectomy using endoscopy, so less scarring and faster recovery.
I was scheduled for port insertion on same week Thurs, but it was too close to appendectomy, so they rescheduled for this week Mon. Tues was scheduled for another CT for lung radiation, cause cough not going away and having shortness of breath after walking only a few steps. So unfair that I have lung cancer when I never smoked, but did inhale lots of second hand smoke. Tried to get a walker with a chair, but don't have Medi-care, so might have to pay cash. Hope I qualify for Medi-care. Been working on applying for disability back to Oct 2011 to now.
Will try to read your posts later. Been really tired lately, but hanging in there.0 -
Beth, thank you for such a nice post. Yes, I'm waiting, but the lump on my hip is not getting any bigger, in fact, it seems smaller in the morning. So I'm hoping it's fluid. Seems to coincide with my cankles. Weight loss is going very slowly, but I am making progress. I finally made it to 10 pounds lost. I can feel myself improving everyday. Every time I pass a mirror or reflection in a window, I see my mother, too. I do try to dance some (in the house where no one can see me) and it is a lot of fun. Can't cut-a-rug, yet, but I'll keep plugging away at it.
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julie, thank you for posting and letting us know how you are. You really have been through a lot. I'm glad they found the appendicitis before they started radiating it. Wow, that was a close one. Congratulations on finishing brain radiation! Glad you're hanging in there.
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Grandma ~ Well I guess you can let them know they don't have the correct hip on their records. It's a good thing it isn't an appointment to remove anything cause you could be in big trouble!
I hope they find out what's going on with your hip. Good luck at your BS appointment. I was told I didn't need to see the BS again. I wonder why some of us do and some don't. Another mystery of the BC saga! It's feeling pretty lonely here and I really hope Julie stops by to post so we can find out what's going on with her. I so often wonder about the other women we met on here during chemo. I know that the great majority never post after they are finished and that's probably because they are out living their lives and some probably don't want to even think about BC. I am just glad that there are a few of us staying connected. Hope you have a great day!
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Julie ~ So...dip stick that I am I didn't see that there was another page added to our postings, so I wrote without seeing that Julie and Beth had been here. I am SO glad to hear from you Julie. We were concerned about you, but it makes perfect sense that you had a lot going on, to say the least. I am glad you had your appendix removed before it had burst because that would not have been a good situation with everything else you are going through. I am sure you have given us your FB name and I have missed it somehow? I will look back to find it so we can keep tabs on you!
Beth ~ Happy to see your post as well. I laughed when I read your description of looking in the mirror and seeing your mom. I wish I could look and see my mom's body, but have it be mine now as she was always very thin and I am very NOT thin! I have been thinking about buying a Zumba cd if there is one for old, fat women! I don't think the world is ready for me to do that in public and neither am I!
Grandma ~ I am hoping and praying that your test shows only fluid in your hip. I have had the cankle issue during the summer, but now that it's not so darned hot the cankles have not reared their ugly stuff. I have been trying to eat more sensibly, too, and have managed to get 6 pounds off in 3 weeks. I had a bad couple of days where I ate things I shouldn't have, but am just trying to move onward and upward. I am proud of you for reaching the 10 pound mark as that is my first goal in this weight loss journey.
((To all...take care and have a great week!))
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Linda, thank you. It's been a long time since someone said they were proud of me. But look at you 6 pounds in 3 weeks, you'll get to your goal in no time. Mine is since March. My pcp is helping me. She wants me to concentrate on increasing my metabolism and she said the pounds would start to come off. (My metabolism was very slow from years of dieting that didn't work.) She was right. She started me off by helping me change my eating habits. Eat a big breakfast everyday, and then smaller meals (200 to 300 calories) or snacks (healthy ones) every 2 to 3 hours, to keep my body from going into starvation mode. She also wanted me to concentrate on increasing muscle mass by weight bearing exercises. I have never done any kind of weight lifting, so I still can't do too much in that area. But some weight bearing exercises using my own weight (squats, push ups (hate em), walking, etc) I have been able to make progress. It's been a slow process, but I have to admit, it does work. I started with small changes and worked up from there. I use to starve myself all day and eat a big dinner. Guess thats a good way to get fat, because that's what it did for me. I'm also drinking mostly water (I'm up to 60 ounces most days). I also, just found a website with lots of good info about increasing metabolism. It has suggestions my doctor didn't mention. Here it is: www.womenshealthmag.com/weight-loss/boost-your-meabolism
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I just got back from my dream vacation with my husband to Hawaii. I had always wanted to go, and after having had BC, I knew the preciousness of time and didn't want to wait much longer. Our 41st wedding anniversary is Sept. 30th, and with having just retired, it seemed like the best time to go. We had a great time. I did keep up with the posts while I was gone because the updates came to my phone. I have my next yearly mammogram on the 30th, so I will be glad when I have had that and can rest easy again for a few more months. I ate way too much on the trip, but in my defense, we did walk every day, probably at least 6 miles. So after 16 days, I only gained 3 pounds. I was pretty happy about that. I had worked so hard since January to lose some weight, but I really never even thought about watching my calories while I was on this great trip.
Grandma V - So glad you are having success with your weight loss and finding ways to boost your metabolism. I didn't look at the link you sent in your posts for ways to increase metabolism, but I do know that eating different foods is supposed to be good also. For some reason, your body gets tricked by the new, different foods coming down and has to work harder, thereby increasing the metabolism. I also know that just like eating and exercising increase your blood pressure, they also increase the metabolism. So whenever you can, exercise first before you eat something, then when you do eat whatever it is, the food will metabolize more quickly. I am hoping for good news on your hip scan on the 4th. I also want to thank you for being so faithful on this site to all of the ladies, with your encouragement and understanding. You always seem to know what to say. I will read someone else's post and be wondering how I can reassure them, and then I see your reply and you will already have said something better than I could have.
Phyllis - So glad you are finished with the chemo (again). Any news yet from the appointments you had coming up. I am praying that you will have good news followed by more good news.
Julie - Yikes on the appendicitis. I am glad they found it before it was even more of a problem for you, and also since it was not a cancer spread in that area, that is one less area to worry about the cancer. I hope your recovery from the surgery is a quick one and that the port placement goes smoothly. Mine went very smoothly, but it was still a bother.
Beth - Yay for the visit with the babies! I also am hoping that you can have a real heart-to-heart with your daughter while you are there and that you can become close again. Being a mother is a very stressful job, both for us who have grown children and for those (like your daughter) who have the little ones. I have a grandson who was born 5 days after my last chemo, and I can tell you that his mother (my daughter) has had a few meltdowns since he was born. Having twins is bound to be even more stress.
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Nel - It sounds like you are "learning to surf" as your signature states. I love that phrase. I had pointed it out to some of my family a while ago. I admire you because even though you cannot control the waves that are coming your way, you certainly seem to be in good spirits, keeping active at work, and trying to remain positive in your attitude.
Linda - How are you? I hope you are still dancing. I tried zumba with a CD before I was even diagnosed with BC, and I could not keep up at all. I felt old and fat when I tried to do it. At the Y, there was a class for Zumba Gold, and I really wanted to go to it, but I was too busy to go during the one time a week it was offered. Then by the time summer came and I retired and had more time to spare, the gold class was no longer offered, so I went to the regular one. I couldn't do all that they did at the class, but I did keep moving in some smaller way for the whole hour. I have not gone but a couple of times because I started having a pain in my lower back that I traced back to the class, but I did see in the new schedule that the gold class had been added again for this fall. I plan to try that again.
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bahamamom, Thanks for that tip (exercise first then eat) I will definitely add that to my regimen. And I appreciate you continuing to post as well as I do all of you.
You're not going to believe this. I got a letter, Thursday, from my pcp's office about my appointment at the hospital Oct. 4 for the sonogram of my bump on the outer left side of my hip and that's not what the appointment is for at all. The ineptitude of some in the medical community never ceases to amaze me. They have me down for an abdominal sonogram with instructions to fast after midnight and to drink lots of water. What in the world?? Do they think I'm pregnant? I called and of course didn't get to speak to anyone. Left messages and no one called back. It's just crazy. No wonder the third leading cause of death in the U.S. is medical mistakes. I just talked to the nurse last Monday and had to correct her on which side, so somewhere between her and the referral office or at the hospital it just got turned into something else. I have my annual appointment with the breast surgeon Monday and they have an ultrasound machine in the office, maybe I can get them to do it. I thought the bump on my hip was my second brain growing there, and instead it must be a baby. Unbelievable!
Reminds of the time in 1979, when I went to a clinic that had there own lab. I was sure I was pregnant then. In the lab they had you stand in line to receive your pee cup (men and women in same line). They directed you to the restroom where you tried your darndest to pee in the cup and not on your hand (I still can't do it). Then you came out and got in line again everyone holding their own pee cups. I was behind an old man who could bearly walk. He set his pee cup down and stepped away, so I was next and a different tech took mine and I stood there a minute to see if she put a label on it and she had the label in hand with my name on it and said I could go. So I did. After some days I got a letter stating I was not pregnant. Home pregnancy tests were fairly new then, but I decided to try one to compare to the lab. Home pregnancy test said I was pregnant. And I was. So I've always wondered if that elderly man's pee got mixed up with mine. First elderly man ever to be pregnant.
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Grandma V-that is pretty crazy, but unfortunately it is par for the course. I always feel like I am going overboard with giving too much detail, info, and asking doctors to show me how they know whatever they are telling me. I even asked the breast surgeon, after he spent a whole hour explaining all about the kind of cancer I had and what type of surgical options I had, etc., if he was sure the pathology report was right and hadn't gotten mixed up with someone else's. Even once is too many times to overlook something or to get us mixed up with someone else. I am kind of thinking that maybe they will just be scanning all over the area where the lump is for you. It seems like every time I have had an ultrasound they asked questions like where is the pain or what symptoms were you having or other questions that would point them in the right direction of what to look for. Of course, I would still try to call them like you are trying to do and whatever they say when you actually have the ultrasound, make sure you show them the bump. I think that will help.
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Thanks Bahamamom, I will certainly show them where the bump is.
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GrandmaV - frightening Big red arrrow pointing to the correct spot is called for!
Julie - Hope things are improving. I am truly amazed at what seens to come our way once we have a BC DX, isn't that enough.
Bahamama -Surfing is my son's passion, so a very appropriate saying for my family.
I am so happy that it is this weekend and not last. Worked all last weekend, took me to mid week to recover. This weekend went to local IBC Support group, there is a great group of woman, then some shopping woth my daughter, she is learning to sew at school - so fabric for her next project - which is for me and then supper with a friend. Today church and then looking at condos when my house sells I am ready to go. I am so ready to go now - patience.
I feel well, tho note to self, don't eat chinese food while on Tykerb! My worry, and I know this is crazy, is that I don't worry enough about my dx and am in denial because I feel and look well. Worried that when the day comes when I am truly "ill" (don't know how else to explain it) it will hit me like a ton of bricks. So I am worrying about not worrying or maybe I am just enjoying the beautiful fall here in Mass and trying to keep moving as best as I can. Not sure.
Hope all are having a peaceful weekend
Be well
Nel
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Nel, I was just reading the "Herceptin -Quick Side Effects Poll" thread and one of the ladies who is stage IV had her blog in her signature space. Screen name "gritgirl". Her August 26, 2013 post entitled "If, not when" was beautiful. Dealt with her struggle to live in "the land of if" and not in "the land of when". It's beautiful, I encourage all to check it out. I think you've already achieved living in the "land of If". And that allows you to have days when you don't really think about cancer. As bahamamom said you've learned to surf. Since she has her blog in her signature I don't think she'll mind if I direct other's to her blog:
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Grandma,
Thank you for posting the link. Exactly, she has said it perfectly. Can't wait to get to work and print. A daily reminder to my self.
Be well
Nel
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Ok I need to vent! There is this so called friend of mine who lives in Korea and was an exchange student here around the same time I was in college, she is 1 yr older than me and is a 2 time breast cancer survivor. Anyways, she decided it would be a good idea to visit me while I was having rt breast radiation treatment in Sept 2012 to supposedly help me with cooking/housework. She wanted to bring her then 4 yr old son, her motive to send him to pre-school in the states. I knew she didn't know how to cook, but she insisted she even has a cookbook and everything!
Well, as soon as she came with her son, they were on Korea schedule and were up when we were trying to sleep, cooking, talking, eating, ... My girls needed to go to school and mind u I was doing radiation treatment at the time and was very tired! She cooked 1 meal the 3-4 mos she stayed with us. Never did any cleaning, I had to teach her how to clean the damn bathroom mirror, which had so much splatter on it, I'm sure she couldn't even see herself! I also had to teach her how to clean the damn toilet, especially since her son kept leaking on the rug, told her to clean the floor and wash the rug! OMG, she's been married for how long and her son is how old, she doesn't know how to do these basic things. I even had to ask her to at least vacuum my younger daughter's room, where they took over.
I ended up cooking for 2 more people and cleaning for 2 more people, while taking care of my 2 kids and my husband, go figure y I now have stage 4 breast cancer. She had the nerve to tell me after 3 months of intruding in my life that her son has been complaining that my husband and I have not been as nice to him as the beginning. Is she fucking kidding me!
She was planning to go back around Christmas and wanted to return with an additional kid, not her own, but one of the students she was tutoring in English. I warned her having 2 kids is way harder than having 1, especially not her own kid. She didn't heed my warming and I only ok'ed it cause she offered to pay for living expenses. Since I wasn't working I was thankful at first. They ended up using 3x more electricity and water that the amount they paid us wasn't enough, our market bill came out to at least twice too.
This is getting too long. Fast forward, she now lives with her son, the exchange student, and another female adult she asked to come and help her cause without me she can't do anything. She texts me today and has the nerve to ask me where to get Halloween costumes, I flipped out. I gave her a piece of my mind. I told her she doesn't know what I'm going through since she had early stage breast cancers, went through chemo only once, surgery twice and radiation twice. I have stage 4, everything hurts from head to toe, what does she know about how I feel! I'm worried about who will take my girls costume shopping and here she is asking a sick person where to get costumes. She has access to internet, she has a smart phone, she has other friends she can ask, and I'm sure she has ads like all of us do from Party City, ... Y are people so selfish and senseless, I know I'm always giving, but isn't it time I receive and not give for once? So frustrated and hurt!0 -
Julie, people can be so insenitive and thoughtless. She really has no idea how hard this is on you. Only others going through stage 4 could know. I'm so sorry she hurt you this way. Hopefully she'll finally wake up to the fact that she should be helping you and not the other way around. I hope so. You certainly don't need this added stress.
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Vote her off your island immeadiately! You do not need this, nor does your family. And don't look back
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Thanks ladies, she realized that she's making my life miserable and apologized, but the damage has already been done.
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After about 45 frustrating minutes yesterday on the phone, I got a phone call this morning that my sonogram has been changed to sonogram of the left hip. Same day, Oct. 4 at 9:00a.m. While on the phone, yesterday, I tried to be patient while telling my story over and over to different people who would then transfer me to another person (4 times in all) The last one spoke to me like I was 5 so I played along and let her think I was senile. It's a little funny now that it's changed, but I hadn't gotten anywhere trying to explain it to them, so I felt the only way to get someone to ask the doctor (they wouldn't let me talk to her) was to let them think that I was the one confused. She said she would send the doctor a note and have her nurse call and explain the tests to me and why I needed them. I said, "That would be great, thank you". So, the nurse called this morning and instead of explaining it to me said I was set up for the wrong tests and she had already called and changed it at the hospital to a sonogram of the left hip. I was so happy, I didn't mind that I didn't get an apology, and I said, thank you soo much, I'm so glad you caught that. It'll be interesting to see what actually happens Friday.
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I had my mammogram yesterday (2 Years since dx). There was some glitch in the computers there that was keeping them from being able to access the previous mammograms for comparison, so I waited forever to see the dr. They told us that we could reschedule the dr part of the visit, but I wasn't walking out that door without knowing something. So after a 2 hour delay, I finally heard the words "normal" again. She did say that the radiation had caused a lot of changes, but acted like that wasn't anything to worry about. I know that breast is shaped differently than the other one. It is shorter (doesn't stick out or rather hang down as far), but it is fatter and heavier and still red, nipple is now inverted, and I can feel a wrinkly kind of lumpy area on the underside of it. It may not look great, but it is cancer free, so good news for another year.
Grandma-glad you were able to get your sonogram test straightened out. Let us know how it goes.
Julie-you do not need people around you now who require that much work-try to focus on yourself, your health, and your family.
Nel-anytime you can spend not worrying is golden. Do it as often as you can. I am glad you are still feeling good. Try to take it easy when you can, though.0 -
Hi All,
I have been camping for two and a half weeks--looks like I missed a few things..like umm..phyllis is a sissy???? OMG-- no one on this site could ever come close to being a sissy... here's a big cheer for all!! NO SISSYs here.
Well, we got hailed on and flash flooded and swam through high waters and mud and rode our horses to archaeological ruins and red canyons.... it was great!
But i got a mental rest to look at things a bit more objectively-- we are not doing well with all the medical bills--actually going under... so we are likely going to have to sell the house. Too bad since I designed and built it but scaling down is not a bad thing. My son also totalled the family car so now we are stuck with all that... seems when it rains-- it flash floods!!!
Sometimes doors have to close in order to open up other doors...
Q
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Quaatsi, I've never been camping, but after you described it --- I never will. I hope you don't have to sell your house. That would be a shame. Was your son ok after he totalled the car?
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Had the sonogram on my left hip. Tech said it didn't look any different from the hip tissue. She scanned it over and over, said it looks to be a lapoma (fat deposit). But would have the doctor look at the images and I should call my pcp Monday to see if they want a ct scan. That's the 3rd person who has called it a fat deposit, so I'm feeling like that's probably what it is. But I still feel apprehensive about it.0 -
Q-I am sorry that your medical bills are causing you to have to consider selling your house. That is totally unfair and such a shame also. No one should have to pay more than their insurance (or at least much more) for basic medical care. It wasn't like you had a face lift or other optional type of procedure that wasn't completely necessary for you to live. I am just thinking that you may try talking to the health care providers that have cared for you to see what they may be willing to do for you before you really consider something as drastic as selling your house.
Grandma-I am glad that the results of your hip scan are sounding good, and I understand your apprehension in spite of those good preliminary results. I think it is understandable for us all to try to second guess any test results we get since our breast cancer diagnosis. I know that I worry now over every ache and pain or new bump anywhere on me. I relax a little when a doctor tells me what it is and that it is completely unrelated to cancer. Then, a little while later I start to wonder/worry about it again.
I am going to be in the Komen Race for the Cure on October 12th here in Louisville, Ky. My daughters wanted to do it, so I agreed to go with them. It is 5K, so I will be walking, not running (ha! ha!).0 -
GrandmaV, Good news tho I am sure you want to speak with your PCP. Keep us posted.
Q - ditto that seems crazy, I would look into any other options, hospital, have you posted here on the boards the question. There is a wealth of info!
Today was a treatment day for me. Herceptin infusion, no to minimal issues with all that. Tykerb at home every evening. First scan in 3 weeks. I am wising away the next 3 weeks, I just need it to be Oct 25th. Tho it will be early to see if anything has changed, I just need to know it is not growing.
Busy weekend ahead.
Hope all enjoy the weekend
Be well
Nel0 -
hi folks, Phyllis is in Houston staying with a friend. She is having problems posting. She's able to read posts, so, keeping up on what's happening with you all. Sends love &hugs to everyone. She is not going to have radiation. She will be in Houston till after Thanksgiving. sassy0
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sas-schatzi, Thanks for letting us know about Phyllis.
Phyllis, thank you too for getting a message to us. I hope you've recovered from all that chemo and that you're having a restful and fun time with your friends. We miss you.
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Just to update all of u, I'm in the hospital cause I have not had a lot if energy, am nauseous, have low appetite, difficulty getting around without shortness of breath and coughing. I came into the ER per my onc and family request. Dr thinks I might have pneumonia. What next?0 -
Julie,
Enough already. Hope they figure out what is happening , treat it and send you home soon! Be well
Nel0
