August 2010...anyone starting chemo besides me?!
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Hair: A BC friend told me she was getting on her motorcycle the other day, her hair is a little longer than mine, she had on no makeup and her motorcycle clothes; anyway, this guy stopped to ask her a question and he said something that led her to believe he thought she was a lesbian. So people might not automatically conclude we have cancer. They might come up with other reasons why we have "butch" hair (and, no, I don't have a problem with lesbians and don't mean to hurt any feelings! Just sayin...)
Peeing: Glad to hear others are peeing like racehorses. I was beginning to think they'd cut something when they removed my ovaries. All I do is pee and pee and pee!
I just called the doctor's office and the nurse said they don't have my path report yet. I asked what the holdup is and she doesn't know. Good grief, they've always had my path reports the day after surgery. We are talking since last Wednesday here! Tomorrow is my deadline for cancelling my implant exchange next week, so I've got to know something by then. Argh! I hate waiting.
It is gorgeous here. 70 degrees, sunny, everything is blooming. I went out to Walmart a while ago. I'm not supposed to drive until Wednesday, but it's only 2 miles. I did fine. Just wanted to get out for a bit. Hope everybody is having a good week.
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Lady: my heart jumped when I saw you were the last post...I was secretly hoping to read about a good path report! You are absolutely right and very good point about people thinking we might be being butch with our short hair! That is what I think Ms.makeup-and-supermodel-hair behind me was thinking! Of all the atrocious things...she was wearing FUR! She was just anesthetized to social etiquette.
You are so brave in that your only, and premature I might add, trip was to Walmart! WOWIE! That is spirited...or maybe it is just me and I live in the Northeast where the parking lots are the size of football fields and the place is always packed?!
I am a bit tired of the urinating also...up 3-4 times a night on average. A good night is twice!
Ckptry: yeah, I know what you mean about the lady who's husband died of bc. After my father died of lung cancer, I would oft times put my foot in my mouth trying to console someone! My pre-bc self would try to comfort people afflicted with silly words of comfort...we are all only dotted lines to each other...this is what we do....!
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peeing - I got in such a habit of drinking huge amounts during chemo that I still do it. I wake up, pee, drink gobs, go back to bed, wake up, have a hot flash, pee, drink gobs, go to bed.....wake up - exhausted!!!0
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Hi all,
I am stopping tamoxifen for 2 weeks per my onc's recommendation. I will see her at my next herceptin tx to discuss. I feel crazy. I am having such severe moods swings - from total depair to panic attacks and it's just not me. I'm also in a fog, really can't focus well. I took the kids to the playground the other day and when I got back to the parking lot saw I had just walked away from the car leaving the back door wide open. I explained to the nurse that I've been on antidepressants and antianxiety meds for several weeks and I just don't want to keep adding more medication. I can't tell if the brain fog is from the tamoxifen or the antianxiety meds. Uggh what a mess. I was sobbing on the phone with the nurse and that is just not me. I don't know whether to hope it's not the Tamoxifen and that I'm just nuts so I can take it again -I'm scared!
I'll post again when I'm on a happy mood swing - poor dh; I feel like Dr Jeckle and Mr Hyde
Carolyn
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Hang in there Carolyn - Taking one med out of the mix will help you sort it out. You are not alone with the car door though. DH and I went for a walk and were half-way up the first hill when a fellow walker trooped by and commented what a lovely evening it was and did I mean to leave my car door open. Turned around and sure enough, wide open. Would have sworn I heard it close.0
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Sorry to hear that Carolyn. You'll have to keep us posted on any changes during that time. I am heading to my family doc tomorrow for checkup and ask her about my sleeping that still isn't improving. I am nervous about the amount of sleep that I am getting as lack of sleep can cause accidents etc. Just sucks..I have tried almost everything and am working out 3-4 days per week. Aaarrggghhh. I think that I mentioned in a previous post that I have had headache for a week or so--could be from lack of sleep but I will inquire with Doc. Not sure whether this is Tamoxifen or not.
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Finally figured out how to post pic--here is my hair at about 14 weeks PFC.
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Figured out how to insert pics too... LOL this is me like 10 seconds ago- this is what 13 weeks past chemo?
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Ckptry: that really sucks. I really think that taking tamoxifen AND herceptin concurrently is a lot for your sytem. How many more herceptin txs do you have? Perhaps waiting until you are done with herceptin would be good. Most of us on this thread seemed to have been the types of people not wanting to ever take meds at all. I fought about starting synthroid! In any case, all of the sudden we are being made the equivalent of a long island iced tea of prescriptions. I don't think any of the reactions any of you/us are having are odd at all and I do think they are 100% attributable, perhaps not to 1, but the number of meds we are on. I hope you can resume perhaps after herceptin. Oh, Carolyn...I sure hope better times are coming!
I have been on tamoxifen about a month and my biggest problems are the sweating and sleep issues, some nausea, lack of sleep and I am achey. I just don't talk about these things much b/c I don't know if it is left over from chemo, if it is age or what. I hate to complain but I have to be honest with you all. Also, the rash on my butt, lower back and inside of 1 arm is very, very weird and I will be off to the derma about that. I don't know about you all but I am so tired of going to doctors. I mean they are all nice and pleasant so it is not about the doctors themselves but I am just tired of having to go. Oh well...enough whining!
Rachel: your hair looks great. It is growing in pretty well. I really feel so bad for you about the sleep issues. It really sucks for you because you are back to work. I could not work like this between all the issues with sleep and feeling sick, achey, tired and hot, I have this wound in all of it's disgusting glory packing it twice daily. That wound area hurts sometimes, really bad in the night also and wakes me up. As for you, it seems as if your job might be demanding from some of what you have said and doing that on a lack of sleep and being a mother and wife is an awful lot of hats to wear when you are running on fumes of sleep. I sure hope they are able to help you out in some way.
Sleep: if/when any of you have taken a sleep aid or an anti-anxiety med to help you sleep, do you find when you wake your sleep seems to have been somewhat artificial? Like you didn't get "real" sleep but rather medically-induced sleep? Just wondering.
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Editing: something I notice lately and that is I am typing the same thing twice and normally in couplings of 2 words! Great...just great! This is usually the reason for my edits!0
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ANd just for the hell of it LOL
My daughter this weekend and my son- we went to San Antonio to traders village and they got their faces painted
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Carolyn - I'm so sorry! Your story MIRRORS mine back in January. Have you done "lifemath?" It really helped me. When I realized it was only a 3% protection increase over 10 years and a 5% over 15 years it really helped. I'm a big believer in when your body says NO to listen to it. It took me a long time to come to that concusion with the tamoxifen. I realized I could match that 3-5% with some lifestyle changes........
I was on Lexapro for 2 1/2 weeks along with ativan and xanax alternating. I went off everything and I'm fine now. It will take a while for the tamox to get out of your body and for the hormones to go back to normal. It has been proven that tamox causes decreased cognitive ability in some women so you are NOT crazy - the brain fog is real. I remember feeling that if this was how I had to live my life, that I didn't want to live. I know that's an awful thing to think, but it's how I felt on it. I have never felt that before nor since.
It will get better - give your body time and don't allow your doctor to bully you as mine is trying to do.
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Tex - they're gorgeous! (with or without the makeup!)
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Lizzy - yes. There are very few sleep aids I can take that make me feel like I'm really sleeping. Most of the time they make me feel space and in a twilight sleep. Ambien is one of those - benadryl is another. Benadryl works best for me at a very low dose, but when it doesn't I feel like it's a fake sleep. Ativan works well for me and sleep but I have to double dose it. Things that make other people sleep such as Percocet - forget it. Total insomnia (and nausea). But we all know I don't do well with any medications.
Fortunately my sleep has settled back down -the Lexapro caused serious insomnia, as did the tamoxifen. My biggest problem now is night sweats but at least when I wake up, I can change and get back to sleep.
k
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Tex: GOOD TO SEE YOU AGAIN and to hear from you! I was getting rather nervous, I must be honest! Your kids are beautiful! They are sooo cute with their cute little faces painted! Your hair has come in pretty nicely. It is very, very good to get an update from you, woman!
Calamtykel: you did the right thing and had to pull the plug on that tamoxifen. You have, from a nutritional perspective, and in a very holistic manner, replaced the upside of tamoxifen. I am sure you will achieve through nutrition what the rest of us are getting in a pill and will probably be better off for it in the long run. I am still cautiously optimistic about tamoxifen although I also noticed, especially if I don't keep myself busy, I am prone to feeling melancholy. That is NOT like me at all. With great trepidation I will embark on mood swings and tamoxifen studies this week.
Omaz: I thought you went swimming in your blow up pool in the back yard but then I read you went to some salmon-colored building with a beautiful, majestic aqua colored pool! What gives? I think you have a compound in AZ and that pool you describe is what you consider your "blow up" pool in the back yard!!!!
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lizzy - We have a little blow up pool that we set up on the back patio when we just want to lay in the water and hang out. I also belong to a club where they have a wonderful outdoor pool and I can swim the LE version of laps. Yeah, I was a little confusing with all my pool references.
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How did you guy post your pics?
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Texas--Your hair looks very similar to mine. Your kids are so cute. Not sure about you but I had to keep resizing the photo so it wasn't enormous...would have scared everyone away!
Lizzy---I'm not back at work yet. I am still off. I am on long-term disability now--seeing Doc tomorrow to see what she will say about back to work/return to work program. Here--they gradually ease you back in to avoid any issues. I am hoping that my sleep issues are sorted by then. I am sort of partial to back to work--would like to go back but at same time--am enjoying these last few weeks of no Doc and just going to my own schedule.
I have a "sleep aid" -- called Zopiclone. I do feel rested when I take it but I am guessing that you are not getting the same rested sleep as a "natural" sleeper. I have always been a bad sleeper but this is crazy! I don't take it all the time as I have read it is very addictive--your body has a hard time adjusting back to regular sleep. That's all I need
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This is my hair at 17 weeks. I can hardly believe it has been that long since I finished chemo.
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Omaz--Your hair looks great--so thick..I am jealous
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rachel - It seems like there is a certain point where it starts to feel a lot thicker. Kindof sneeks up.0
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Omaz (Rockefeller!): you don't have to be shy about your compound and I am terribly sorry I had to point out your inconsistencies with your pool stories! It is ok...the rest of us don't have humongous indoor pools on our property encased in a salmon-colored building but that is ok....we are alright with that! We shall vicariously! I am only joking; I have a little blow up job as well. Stupid story (big surprise, right?!): I was living exactly 200 feet from the water in Connecticut and instead of going down to the beach, I prefered to stay at my house, blow up my 12' x 6' pool, put by speedboat tube inside of that pool and float around on it, listening to tunes and drinking with my neighbor!!!!! It was so comfortable b/c those speed boat tubes are huge....good times...I took that entire summer off! Your hair looks GREAT btw! I love the color also. Looking good, woman!
If I had to liken myself to anyone, it would be Tex. I think that is close to where I am at. It is kind of fun to watch it come in and when I sweat and rub my hand over it, all the little drops of water that come flying off are like a much welcome treat!
Rachel: I am beyond happy to hear you are not back at work yet! Every time I read your posts about lack of sleep, and knowing how awful I feel each day after these hot flash, up-all-night sessions, all I could think was if I still worked, especially on Wall St, I would never be going back. I am on long term also but in the states that means you are fired! They must fire you so you can go on the long term care policy you had been paying for while you were employed. Are you even happier you live in Canada now?! In any case, I was so sad to read about your tales of sleeplessness and am just happy you can weather this storm while you are out of work and hopefully, by the time you go back PT, you will be doing better.
Eating: today I did not feel like it so I had chocolate milk with my vitamins and a turkey and cheese sandwich and I am still not hungry. Who am I? Where did I go?! Did any of you ever go to one of those calorie counter calculator and put in your weight and it tells you how much you need to eat to maintain your current weight, how much to lose etc..? Well I am usually not near my daily intake to maintain my weight but it does not go down! Alas this is age too, I suspect.
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Lizzy - my hair came back pretty gray. It wasn't that gray before. But you know what? I am just thankful to have hair whatever color. I like blow up pools. I can run a hose from the utility sink to the pool and fill up the pool with hot water. I can just picture you in that big tube hanging out.0
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Omaz: that was 5 years ago when the entire summer was spent going to Columbia (University) as I was thinking of going there and a number of trips needed to be made, then to ESPN Sportszone to watch the Yankees, to a bar I liked to frequent in Grand Central(and to entertain the male offerings....!) while awaiting my train, then on to a stop at a jazz bar I enjoyed in Southport (and to peruse the male offerings...!) and finally home to hang with my neighbor, who was seasonal and who I adored! It was a great time and I will never forget that summer or the wonderful memories...it was very margaritaville! Good times! That tube was perfect..I would push off one end and meander to the other and repeat that cycle. I made it down to the beach but I so did enjoy that pool!0
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Omaz - You look great. I'm about a week behind you and I found, too, that all of a sudden it thickened up. I finally put some semi-permanent color in it so it would look more like my red locks of old.
Lizzy - I have found the same thing with eating. I'm eating around 1300-1400 calories a day, and I'm supposed to need 1900 to maintain my weight. I'm working out 3-4 days a week. And I haven't lost an ounce - I've even gained a couple of pounds, although I'm hoping that is muscle. It is extremely frustrating!
I've been on Tamox for 2 months now and *knock on wood* I think my hot flashes and night sweats are improving. I haven't awakened wet in over a week. And my hot flashes seem to be somewhat less intense than they were before. As long as I fan myself for a few minutes it will pass. Oh, I hope so. 2 months down, 58 months to go...
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thanks all for the support. This group has been so amazing for me. I was hesitant to share what was going on because I didn't want to discourage anyone taking Tamoxifen. My oncologist has been supportive. Just last week I told her I didn't want to stop and she said we need to look at quality of life as well. She said she wasn't in my body so she couldn't tell me what was tolerable. But after the last several days; I was crying on my way to pick up my son at school for no reason and then later I was drawing with the kids and suddenly my heart was pounding and I felt like I was going to hyperventilate. I didn't want them to sense my anxiety or get scared. I finally called the nurse and she was very understanding, but for me personally to be crying on the phone with a stranger just felt awful. She said it happens to some women and my oncologist will see me at the next vist to discuss. Lizzy that's a good idea about the herceptin, maybe I could separate the two. It's hard, my 6 yo is still having bm's in his pants, and his new ST is being snotty because I'm not doing all the oralmotor excercises she's sending home - I feel like feeding and dressing the kids are major accomplishments right now! I'm having a hard time cleaning and organizing b/c I can't focus. I know things will get better. I think I need to be kinder to myself and just accept I can't do it all right now.
kel sorry your onc is giving you a hard time. that doesn't help! My mom is a 25 year survivor and she took Tamoxifen for 5 years so that weighs on my mind. I'll see if the onc has any ideas. My mom is taking my daughter for a few hours after preschool so at least I don't have to put on a happy face for a few hours:-)
jsw so glad you are doing well on the herceptin
texas your kids are sooo adorable:-)
Carolyn
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oops forgot - lady thinking of you, hoping you get the all clear soon
Carolyn
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I love seeing all these hair pictures! Rachel, Texas, and Omaz you all look great! I tried taking a picture of my hair yesterday but it is still so short and sparse that in the photo I just look bald. Maybe in a couple more weeks there will be enough to see it in a photo. Also, Texas your kids are adorable!
Lady That is so frustrating to have to keep waiting for your path results. Hopefully they will come in today.
Carolyn I'm sorry to hear you have been having such a rough time with Tamox. Hopefully the break from it will get you feeling better and you and your onc can make a more informed decision about what to do. It sounds like your onc is being really understanding and supportive (I especially like that she is concerned about your quality of life) and that is great!
Lisa I'm glad to hear you are doing well on Tamox and that your side effects are starting to fade. My onc says not to start Tamox until rads are done so it will probably be late May when I start and I hope that I do as well as you seem to be doing.
Regarding sleep and hot flashes Though I am not on Tamox yet I will say that I am currently still having hot flashes though not as bad as earlier on during chemo and I'm also having trouble getting to sleep at night. I used to fall asleep pretty easily and sleep well and right now I'm definitely not sleeping as well as I used to. I was taking Ambien during chemo but I've gone off it now. It is harder for me to get to sleep but easier to get up in the morning - I think the Ambien was making me a bit groggy in the mornings. So those of you on Tamox and having these problems it may also be partly due to post-chemo side effects, not just the Tamox. Not really that this makes anything any better but maybe in time as our bodies recover from chemo these problems will lessen.
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In speaking to my onco---he mentioned that Tamox can cause you to slow down any weight loss and sometimes cause some weight gain. Strange because when you look at SE, it indicates weight loss--go figure.
I had checkup with my Doc today and the headache/earache that I am having is explained--have an ear infection--not sure how I got that but basically they said I look all congested. I didn't feel crappy but my ear hurt. She won't put me on antibiotics right now--just some spray to help clear sinuses etc--if it doesn't clear--then onto antibiotics. We also talked about a graduated back to work program that we will start putting into place over the next few weeks. Mixed feelings about back to work---good and bad. My doc is pretty supportive as to what is best for me.
Lizzie--That really does suck about long term leave in the US--here you go on long-term leave as long as Doc agrees that you cannot work for whatever reason--Insurance has to agree also but it seems that Doc leads the way most times. You also get paid--not always 100% but from 60-100% of your regular pay. This is offered more through companies than government. Not sure what the government does here--I don't believe you get long term unless you are classified as "disabled"---otherwise your work/insurance foot the bill for the long term. Bunch of paperwork as usual.
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Good day, girls-
Ckptry: that really is a shame about the ST basically castigating you for not doing more. I hate to sound silly but is your son afraid of the toilet...like maybe he saw a spider or something in it? When my brother was young, he dropped some toy in the toilet (I forget) and he BROKE the toilet trying to get it out...of course the septic system had already claimed it! He was so upset I think my mom had some trouble with him because he now saw the toilet as the evil hole that absconded his toy! I just thought I would offer that anecdote to perhaps get you thinking about something else that might be going on with him. I feel for you, though. I said it a number of times and I will say it again: those of you who are raising children and going through this are the true super heroes and you have it all over someone like me. My heart breaks for all you moms have to deal with in addition to your bc. Just know someone out here thinks the world of you
On the tamox, what do I know about oncology but I do think that maybe herceptin and tamox is too much at once? Perhaps after herceptin you will have a good go of it. Don't feel awkward about crying with a stranger...you, of all people having worked at MSK, know full well how, at any moment, you might find yourself crying with those previously unknown over the enormity of the situation at hand. We are only dotted lines to each other and if we don't help each other, who will? I suddenly starting bawling with a male nurse just before I was getting my port put in...out of no where, whining like a lunatic! That would be the last day I got my period, however! I was really whining up a storm, though....I felt so bad for that guy and he was so good to me. One thing I can say about the nurses at Yale is they are wonderful. I had some great nurses there. Just think of how much someone thinks of how you supported them in a time of need at MSK. Don't worry about a thing
Also, on the tamox, JSW is not even on tamox with herceptin and she is having flashes. I just think the 2 together are a lot.
JSW: rockin' the herceptin!
Lady: where is that path report?!
Lisa: on the weight and working out, if a 5'6", 42 y/o woman weighing 145 who wants to maintain her weight would have to eat almost 1900 calories a day! It does not make any sense. Yet, if you reduce caloric intake AND workout the results are negligible. Who is eating 2000 calories a day anyway? They must be eating at McRat 2xs per day! I was listening to this really nice looking guy once in LA talk about diet and exercise etc... and you could notbelieve the amount of food he ate every day when training just to maintain and build. In any case, it was all clean like grilled eggplant and 2 grilled turkey burgers (no buns, cheese, bbq sauce etc..) or a grilled chicken breast, lettuce, cucumbers and craisins (no dressing) and the like. I know that from training. The food industry has us convinced we are supposed to eat for taste but to achieve true nutrition, that could not be further from the truth. We should eat for nutrition 6 days and eat for taste 1 day! That is LL Cool J says!
Does anyone else spend a lot of time on the phone making appointments, getting test results, talking to insurance companies etc...? wow...!
Have not heard from the gyn on the pap yet...today is 2 weeks....
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lizzy - We have a little blow up pool that we set up on the back patio when we just want to lay in the water and hang out. I also belong to a club where they have a wonderful outdoor pool and I can swim the LE version of laps. Yeah, I was a little confusing with all my pool references.