August 2010...anyone starting chemo besides me?!
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kel I'm so sorry. I had an endometrial biopsy also b/c I got one period when I first started tamoxifen. The one and only period since, so annoying. The worst is that as a nurse and used assist and think I hope I never need one of these. The gyn I worked with at MSK used to tell patients that women who had been through labor did not find it as painful. I can now officially say bullsh*t! (For anyone who has to get one in the future the good thing is that it's over in a few minutes - but they are long minutes). Anyway, perimenopause can result in long periods or skipping periods until the ovaries shut down for good; they usually consider meonpause a full year without a period, so things are probably ok. Hope you get the results soon.
Debbi -glad the MRI went ok. I've had them for my back, I hate all that clanging and banging. I'm always afraid I'm going to have something metal (they ask you so many times you start to doubt yourself!) and it's going to be sucked through my body onto a giant magnet. fun stuff.
Carolyn
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OMG Carolyn..I was thinking the same thing!! In addition to the claustrophobia, I was driving myself nuts wondering if I really didn't have any metal in me (what about surgical clips?), or what if I left the key to the changing room in the MRI room with me, etc! That is sooo funny! You are right, they ask you so many times that you begin to doubt yourself. But I made it, and actually it is getting easier each time.
BTW, I love your new avatar pic!
Debbi
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Debbi - Apparently DIM is an extract of broccoli that is supposed to help prevent BC. This trial is comparing tam+DIM to tam+placebo on breast density and recurrence. It includes 3 MRIs. My pre-surgery MRI wasn't such a great experience so now I am wondering why I thought this was a good idea. I guess because of the extra surveillance.0
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Debbi - re the MRI, last year when I had my breast MRI at the beginning of my diagnosis, I was sitting in the hallway waiting for them to put them on disk for me and a very overweight woman in a plastic and metal leg cast was being brought in a wheelchair. She was arguging with the tech that she had to keep the cast on - that she couldn't walk without it. He kept telling her that they would assist her in walking and getting on the table. The debate got rather heated- with her telling him that she was not taking that cast off and finally he said "If you leave that cast on it's going to FLY ACROSS THE ROOM because of the magnetic field!" I sat there in hysterics with this visual image of this woman stuck to the side of the machine by her leg................
I have metal plates in my ankle and a couple of pins and they've never been an issue with the mri............
Carolyn -whatever happened w/ the tamoxifen? Did you go back on it? I agree, the biopsy sucked. For me at least - I expected after all that activity , for the doctor to try to bum a cigarette off me.....
but in any case, it wasn't as bad as I thought it would be - when he told me "3 minutes" I sat there when he went to get the nurse and thought "Okay, I can do anything for three minutes. I did four labors and two totally natural childbirths - I can do this.
" It did feel like labor, but really like only one bad contraction. My girlfriend had one done and they gave her no local anesthesia! The shot wasn't fun but it only shot for a few seconds and then that was it. glad I had that. If I hda to do it again, at least I would know now that I CAN DO IT! Can someone answer this though - how do they measure the lining of the uterus? When he's up there having his fun, does he actually look at it? He said when he was done "Everything looks good - I'll have the results in a week." So can he tell stuff by looking at it? I've always wondered if I had fibroids - if I did, would he have seen them?
I didn't think to ask any of this at the time - it all just happened so fast, for which I am grateful!
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Omaz: Sorry, I guess my rant about the MRI was a little ill-timed. The study sounds great. Every little thing that can be done, especially naturally, to decrease the recurrence rate is worthwhile in my book! Honestly, like I said earlier, as terrible as the MRI is, every time I have one it gets a little easier. Heck, at one every six months I imagine in a couple of years they won't even bother me...LOL!
Cal: Good question, how do they tell? I know they measured mine with a pelvic sonogram. They can't possibly "see" anything through there, right? So, I am not sure what the answer to that question is...but I do know that with the onset of menopause, or perimenopause, bleeding irregularities and uterine thickening are not uncommon. I have two girls I work with that are perimenopausal that have had this problem recently. Sending prayers that your tests will come back B9.
Debbi
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Debbi - I don't know - I think they must be able to see something - they dialate the cervix, so they should have a pretty good view, I would THINK....I guess I'll find out next Wednesday when I call for the results.............0
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cal no I'm not taking the tamoxifen (tmx), and I opted out of the monthly lupron shots/arimidex for 5 years. I actually had my check up with my breast surgeon at MSK today (I can't believe it's been a year). she is a phenomenal dr and I really trust her judgement so I was a little worried about what she'd think about my stopping the tmx. She said she looked back to my path and I was 60% estrogen positive, and that they don't really know the role of estrogen in her 2 positive cancers. She said you have to look at quality of life. I told her that I asked my onc if she saw others with this severe a reaction and her response was yes but I can count them on one hand. Dh said well tell her to get out the other hand;-) My bs said she has seen more severe responses to tmx in younger women. (I was 44 at dx which I don't think of as young when I see 20 and 30 somethings; but she said the average bc patient is 65yo). She also said I have to realize that I've done alot , bmx, ACT, herceptin. You can only do what you can do and my body could not do tmx. My next step is to meet with a nutritionist at MSK.
As for the biopsy, they dilate the cervix (they didn't give me an anesthetic first:-( and then use a pipelle to suction off pieces of the lining. they can't actually see the lining, but he probably just meant what he saw in the pipelle looked okay. They won't actually know for sure what it is until the pathology comes back, but if they don't get alot of tissue it's less likely to mean overgrowth or hyperplasia. Uterine cancer from tamoxifen isn't common; they say it doubles the risk, but it goes from 1 in a thousand cases in the general poulation to 2 in a thousand cases for those on tamoxifen.
ok I am wiped out; I think I get an adrenaline surge when I go to SK in the city as opposed to the NJ site. It's just so strange to be going there as a patient. I went to nursing schoool with my bs's nurse and worked with her too, so even though everyone's very nice it just feels awkward. They hug me and tell me I look great (I can assure you I looked much better when I was working there as it was pre kids and pre bc, both of which have added a few wrinkles:-)
Lizzy That reminds me, I saw your post earlier and thought 'earwings', that's a great name for those flaps of hair that curl out over my ears unless I glue them down - then I read on and realized you said earWIGS, lol.
Carolyn
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I have the earwings too!! hehehe
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Good evening warriors-
There was a white skunk in my backyard tonight! It was cool to see that.
Sptmm: that is awful to have an MRI face down! I hate the MRI. I always go to the open or I won't go at all. Of course that was all before I had a deflated TE in my chest!
Omaz: finally, something I eat that is really good for the bc which is broccoli however it is bad for my thyroid! I don't care, I eat it anyway! Good luck in the DIM trial. I think that is great.
Ckptry: do you know why they are called "earwigs?!" Folklore: people thought they crawled in their ears and laid eggs in their brains! Etymology is wild! Yes, and as for those crummy earwings, I have those also!!! I am disgusted with this hair but alas I must remember just 4 months ago I had none! I really need to practice being more grateful! You do seem to look kind of great, ya know! I don't think anyone is paying you lip service when they tell you that.
Well, I guess I should go to bed and get rested up for the big CT scan tomorrow! Geesh, I have survivorship clinic next week and if this is mets and it spread to my liver, I guess I will get thrown out of survivorship clinic!!!!! This long and winding creepy bc road!
Good night, women-
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Good night Lizzy, good luck tomorrow.0
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Good luck with the CT scan Lizzie.
My hair looks like a white clown wig. Think Jim Kroche hair. All I need to do is spray stripes of color on it and I would have an exact replica of a clown.
I have a ticket to the American Idol concert tonight. 6th row center. I got it as a present for myself a couple months ago. Now I feel silly about going and even sillier about feeling scared going alone. So I sort of don't want to go. In fact I hardly want to go anywhere at all. To put this in perspective I have traveled alone to Haiti 7 times.
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Ginger - My hair is the same. In the morning before work I get it soaked and then comb it down and then press it down and let it dry. By the end of the day I am a fluffy mess but look ok until noon. I got some product last time at the hairdresser but I keep forgetting to use it. But really, I am just happy to have hair, you know? And, in the back I can see little bits of my old light brown coming in, but the front, top and sides are mostly white.0
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Carolyn - me also. My oncologist stopped pestering me about the tamox. I'm not worried about it at this point - it's another layer of protection, but then so is good eating, nutrition and exercise! So it is what it is. I am prone to being a really anxious and emotional person; I have struggled with it all my life, even as a child, I was very anxious and worried inside and I wouldn't tell anybody. I felt like the tamox pushed me into a whole new level that I'd never known before and I will not go back there no matter what. I'm feeling great and just controlling my worries with prayer now. I didn't tell my breast surgeon about the no tamox, but when I told my osteopath, who suggested reducing the dose to a less toxic level for my body, I told him I didn't want to do that. He said "Oh, that's okay too." I said "Oh, it is?" I was so relieved that he didn't fight me too.
You gotta do what you gotta do and for a cancer survivor, quality of life is EXTREMELY important!
thanks for the info on the biopsy - I was scared to ask too much before hand, just sorta shut my eyes and said "Do what you have to do."
Anyway, I'm excited- (yeah, it takes so little...) just bought a whole bunch of Stonyfield Yogurt quarts at half price while supplies last. Wiped out the shelf - going to make the kids frozen yogurt pops with them. No rbgh in Stonyfield!
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"My hair looks like a white clown wig. Think Jim Kroche hair. All I need to do is spray stripes of color on it and I would have an exact replica of a clown."
Oh my gosh - LOL!!!!!!!!!!!!!! This is hilarious!
I too though, have the "big hair" thing going on - I never had curly hair but now it's coming back fluffy and curly. I like the little curls on the ends, but not the top! I have enough to brush down as bangs and keep some up -and the ONLY thing I've found to control it is -- get this -- plain Knox gelatin.
For some reason, the gels make my head itch - even the natural one that I bought with no chemicals. I read on line that you can make a very stiff hair gel using knox gelatin - just a little sprinkled in hot water and it keeps in the fridge for days. Rub it into your hands and onto your wet hair - I guarantee, you can bounce a rock off it!
It keeps it curly and keeps it down!Don't use Jello though - you want PLAIN knox gelatin from the baking aisle, right near the jello.
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Thanks for the tip on the gelatin.
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Hi Everyone! I will be away from the computer over the weekend. Heading out now for my "Casting for Recovery" breast cancer survivor weekend. GOIN FISHIN!! LOL. I will report back on Sunday. They have them all over the country so if it is any good, everyone could find one in their state.
Lizzy: Hope your scan went well today. Sending positive vibes your way for good results!
Have a great weekend everyone!!
Debbi
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Good day warriors:
Just when you are thinking positive about the CT Scan, the administrator reminds you that there was *nothing* in my liver when I had my last CT scan!!!! Geez...thanks so much for the reminder! In any case, that still does not mean the mass is definitely mets. It could be anything like what Lady had etc... . I told my sister this morning not to worry and I told her ‘you know when I am going to die? When I am dead and not a second sooner!!'
Ginger: I hope you GO to American Idol! They have the nicest audiences! I think you will have a blast! I wish I did not get up so late and then have to rush out to my CT scan or I would have written sooner! GO, GO, GO! Jim Kroche hair and all! BTW, all the coaching you gave me on the box took car of my grays so you should join me! In fact, just in case there are mets and they want to start with the poison cycle, again, I am going to color it again this weekend and go lighter! Might as well have some fun while I can!
Sptmm: I hope you have a wonderful, wonderful, splendid weekend! Also try not to clip one of the others with your hook when attempting to cast! I hope it turns out to be fun and relaxing for you. All things that you deserve and we all need from time to time.
Calamtykel: great idea on the know gelatin! I seem to remember my mother telling me something about using that trick when she was young!
Good day, girls and to all a lovely weekend-
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Well I'M excited! I bought tiny hair clips today and can actually "pull" my hair back on the sides a tad. How fun!
I haven't been able to use any hair thingies since last year before it got cut!0 -
Hi everyone--Back from week at Disney--we had a great time. Kids are tired out! It was nice having such short hair in the hot weather while waiting in lines for rides....have to look on the bright side of having this short hair! On the plane back from Florida--started feeling stuffy and by the time we landed--have a cold....go figure. My husband reminded me that I always get a cold on the way back from vacation--I think it is the airplane--they are like incubators for germs!
Lizzie--Sorry to hear that you had to have CT scan again. Here's to a clear scan!
Lady--Sending hugs for the remainder of your treatment.
I will be having my checkup with my oncologist at end of July and it looks like I will be cleared for a gradual back to work program for mid-August. Once I see Doc at end of July--should be all in place. I passed my one-year anniversary of being diagnosed with BC while in Florida--didn't think about it at all....amazing that a year has passed.
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I didn't go tho the American Idol concert tonight. I had way too much anxiety. I need to reconnect in the community. SInce I moved here on July 10th last year I still only know medical personnel. I have felt like I look so bad that I was reluctant to go out, that and anxiety left over from the big depression I was just coming out of when I was diagnosed wwith BC last year. Going out with my daughter is something I will always do because the motivation is so strong. She had lived in LA for the previous 10 years and I missed her so very very much. I didn't realize how much I was still affected until I realized I didn't feel I could go to the concert.
Until I became depressed I never had issues with going out of the house but after that began I found myself hiding away, not answering the phone or the door. I want more than anything for life to feel normal again, just regular, doing regular stuff. I don't need fancy jewels or dinners or trips. I do need my friends, of whom I miraculously still have some, all 2000 miles away. I need my family. I need my pets. I enjoy a few hobbies, sewing, arts, etc. and haven't been doing any of them. My work in Haiti has been essentially on hold compared to how active I was for years. I feel sort of frozen in time and space. It took courage for me to buy the concert ticket, and I thought I would be able to go because I took that step.
I have seen a counselor that I really like a few times but she is really into alternative medicines and it comes through in a sort of negative way. I think I need to find a therapist that works more conventionally. I want to return to life.
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(((Ginger))) That sounds awful. I've definitely had times when I feel very anxious, especially recently when the date of my bmx came around. Can you see if there is anyone specializing in cognitve behavioral therapy near you. That is a form of short term therapy that can help with social anxiety. Ask me how I know:-)
Carolyn
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(((((Hugs Ginger))))))0
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Ginger - I'm so sorry!
I have struggled with feelings like that on and off. WHen I don't feel like doing my hobbies or things that I normally enjoy, even baking and cooking, then I know something's amiss. I wish we all had an easy answer for you. I think surgeries, chemo, all the medications they have us on , plus the emotional turmoil combined with all the physical, it's amazing that we're able to function on ANY level. I spent the day on Wednesday very sad - it was my 1 year anniversary from my mastectomy. All I coudl think about was my dad kissing the top of my head and telling me he loved me before they rolled me away. And now he's gone. I felt so disconnected and depressed on Wednesday. Then my mom called and was at a friend's house who had a pool, and wanted to know if I wanted to bring the kids swimming. I really didn't - just didn't feel like being with people. Plus the day before I'd had that horrendous endometrial biopsy-- and I guess just having an invasive procedure made me want to curl up and not see anybody. But I made myself go for the kids. And I had a good time with my mom's friend, one of whom is a BC survivor.
I guess my point is that, is there any way you can take a baby step and connect in a small way? Such as a BC survivor's group? (Or would that make things worse - I dont' know....) or even a small Bible study or prayer group?
Today we have to go to a barbeque at DH's coworkers' house. I don't want to go - and we're leaving in a half hour. I understand what you mean - when you're withdrawn into your own thing, for us BC, then it's hard to try to come outside of that again; you get used to being inside the cocoon. And I totally get the not wanting to answer the door or phone - for me it comes by way of not wanting to handle daily life such as calling and making dentist appointments, or my GYN visit- took me weeks to work up to that one.
I wish I had a solution. If the therapist you have is making you feel negative, get outta there. Someone conventional, such as a psychatrist , (not just a shrink) who can both prescribe the correct medications AND provide counsel might be a good route?
I'm sorry you feel that way - I understand it and it can be a daily struggle.
I do know that yesterday I decided to try something. I happened to turn Joyce Meyers Enjoying Everyday Life on yesterday am. She was talking about believing, and fear. Once it was over I had sort of a revelation. I said "What if just for one day - one day, just today I decide I will not be afraid and every time I am, I will just believe God has it all." I figured I could do anything for the next 16 hours. So this basically incorporated cancer, our water problems (well is testing for pesticides - HELLO - YIKES! and the filter I got for it didn't work, so back to the drawing board and bottled water), my kids, our finances, DH's health--everything.
Now I've tried this before but it's always been on a bigger level - I've always said "From now on..." blah blah. And of course five minutes later I'm worrying again.
But it worked yesterday. I told myself "just for today" and it worked. ANd I had a good day. I decided to do it again today. "Just for today, I will not worry about these things, but will cast my cares on God."I don't know if this will work for me, but I realized I cannot do the big chunks - right now, it's going to have to be baby steps. We've been through a TRAUMA! ALL of us - aside from this, I lost my dad and have had other health scares. We've all had a rape on our lives - plain and simple, and a loss of innocence.
I think for right now it's just going to have to be "just for today" for me. No more big picture. Just casting my cares for today only, and not saying "from now on...." etc. Maybe it will help you somehow too --
hang in there!
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Hi Ginger. Def talk to your Doc and hopefully they can recommend someone also. Depression can be all encompossing. I know after my first diagnosis--I could feel myself slipping into it. I talked to my Doc and also found a therapist that specializes in dealing with cancer patients. It has helped me but I know that I will struggle with anxiety from my cancer forever. Hugs.
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Cal - That was very inspiring, thanks!0
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Good day warriors-
OMG...my little bit of hair is going fly off of my head from nerves! Never mind that damn CT scan as just today I got my comprehensive bloodwork results in the mail that I had last week and my blood counts (platelets etc...), renal function and uric acid are all high!! WTH is going on with me....famous last words no doubt. If this is liver cancer I am going to be really pissed. Even more so because I was unable to get radiation because of the infection from the stupid tissue expander. I am so completely happy that if I survive all this junk and I don't have mets, that they are going to replace my breasts with my own fat and I won't have any more of these damn foreign objects/implants in my body! Plus, I am so happy I will be able to bench press and work my chest muscles again! Better days and higher love are coming, guys!
Sometimes I think you all must think I am like "Mad Max" in "Beyond Thunderdome" just plowing through this cancer waste land!! In some ways I guess I am. Even my sister said she cannot believe I take it all so lightly. Who cares?!??! Freakin' cancer!
Rachel: welcome back! I am glad you got away and had a nice vacation!! Good for you! I have been away over this past year but I don't post because A) the public nature of this site and b)the fact that there are roughly 10+ of us chatting on this thread that has gotten 60K+ views!!!!! I kind of like my privacy!!! I am only half joking also! Congrats on partying through your 1 year anniversary!
Gingers: Oh, my heart breaks for you. I feel really bad that you are feeling perhaps agoraphobic. I agree with Kel, who gave very good advice btw, in that if you can just take 1 small step and do 1 of the many things you would like and just for that day. Perhaps it can be a more manageable situation for you that way. Geesh, I was really hoping you would go to Idol but I totally understand why you did not. Buying the ticket was a step in the right direction. It is a shame that Haiti has lost your altruism through this bc battle. I hope you can return to your work there soon as I am sure they are suffering even more under the wayward auspices of that crazy Sean Penn who has purportedly been there "helping!" for a while!
Ckptry: Good information you provided and thank you for that. This is why this thread is so enriching. There are so many of us who know a lot and help each other. I love it for the richness it provides.
Don't forget to remind Aidan that someone out here expects him to help the Nets so he better keep practicing!
Alas, I have resorted to poison for my earwigs! I bought it at Lowe's today and will be spraying the perimeter. I hate to do this but they are getting pesky.
I hope everyone has a nice day. I will keep you all posted on my liver drama!!! I am going to be really pissed if this has spread! Effin cancer! Also I have survivorship clinic this week and I will probably get tossed out if I have mets!! Just when I was enjoying being called a survivor! BTW, if this is in my liver, I am going to party my ass off and have myself some fun because that is the only way to go out!
Enjoy the day, girls-0 -
BTW, I have been meaning to mention that we are really a young group. I think it was Carolyn that pointed out the median age for bc dx is 65. I cannot believe we area ll so young and dealing with this. Everywhere I go, like at the CT scan yesterday etc... the lady says you are so young etc... and I tell her about Tex and she was flabergasted. I can't believe there are quite a few of us all around the same age dealing with this. It is really anomalous but everyone would argue it is b/c of better screening (thanks, in no small part, to Betty Ford) and dxing. Geesh...it is just surprising there are so many of us in this age range.0
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Lizzy I'm sorry you have to play this waiting game again. Really hoping you get good results from the CT and soon!
Carolyn
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Lizzy - I'm so sorry you are having to go through this! I totally know that waiting game feeling - when I found that lump in January. I would wake up in the middle of the night unable to breathe; hoping it was just a bad dream or that it would be gone, but it was still there.
But there are other reasons your blood counts can be wacked. My brother went for bloodwork and he has a tick borne disease erlichtiosis (sp? I can never spell it or pronouce it!) and his white AND red cells were in the tank! Somehow the disease bottomed them out. Chemo messes with those counts too; I know its easy to try to say "be positive" but were they looking for tumor markers? Were those elevated? Doesn't sound like it if they didn't mention it and that's a positive thing. Also, I would think that if you had liver mets, that other counts would be off. For instance, I have a friend who had routine bloodwork and they found thorugh the bloodwork that she had a liver disease called PBC. I think they can tell a lot about the liver through blood. Uric acid can be thrown off by having chemo- that I do remember reading.
try to hang in there - pop a few xanax or ativan if you need to. I certainly did when I was waiting! Now I'm waiting again on the endometrial results. UGH!
By the way, as long as you're ALIVE you're a SURVIVOR!
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Ckptry: actually this time I welcome the waiting game because it is my sinking suspicion ignorance is bliss on this one!!!!!!!! Thanks for the encouragement.
Calamtykel: you are absolutely correct in that the blood could just be out of whack as a residual from chemo etc... and I am cautiously optimistic. However, I will embrace xanax if things get out of control for me this weekend! I have no compunction about calming myself down medicinally! It is just so spooky to know full well that bc likes to mets to lungs, liver and brain and they have to find a mass in my liver! Again, I am cautiously optimistic. I am pretty comfortable not knowing this weekend...that is for sure! I am praying for good news, woman! Anything but mets...anything! If Lady could handle this anomalous mass in the liver and waiting to find out, so can I!
Best of luck to you as we are both in the hellified waiting room this weekend! I hope your results are perfectly fine. I think a 2 week period is way less concerning than spotting. I think that is what makes them uber concerned. I am sure you will be fine and you are doing everything nutritionally and physically via exercise to take care of yourself and I am sure that will count for something. You should embrace medical calmers this weekend also!
I think I am going to make a white russian and then go to work on building out my aerobics floor! I am in for the night so I can have a drink now!
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