Why was I stronger DURING treatment than I am now?
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Janet, I haven't looked back on my posts, but I remember the things I was writing. It always amazes me how quickly things can turn around. I believe that is what kept me going (and the fact that I had to hang in there for my kids and the support of BCO ladies). The strange thing is I literally woke up one morning and felt completely different. The weight was lifted and I was back to my usual self. I recall waking up and thinking, "Wow, it feels like it's gone."
Here's to hoping everyone's spirits are lifting and everyone is getting stronger. I'm guessing a lot of this was a grieving processes and eventually we accept the cards we were dealt and accept the changes for better or worse.
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I am sitting at my desk--not working--and have been reading this post for the last hour or so--more on the "so" end. I finally had to add my 2 cents!
First, I have been really down the past few months and very teary. I am on Effexor for hot flashes--so antidepressants apparently are not the answer. I have tried to start exercising again, but now that I am back to work fulltime (BTW I love my job--that is also not the problem) I find it so hard to have time to exercise and I am so out of shape that exercise makes me feel like crap. I tried Weight Watchers with my sister a few months ago and was so excited about it, but I just didn't seem to lose the weight. I am on Tamoxifen, but don't want to use that as an excuse.
I finished my chemo treatments last Oct. and finished reconstruction in April--not including the tattoos which are now finished. I am happy with the results, more happy than I expected. I agree with you all that I was a "warrior" when I was diagnosed and now I am a "wimp." I find myself dwelling on what would have happened if I didn't find a lump, etc. I am disappointed in myself for not experiencing some life-altering spiritual change since this happened to me.
I have a wonderful, supportive husband, but I really do feel he is not as attracted to my new breasts because they aren't sensitive like the ones I was born with. We talk about it and he knows how I feel and he says all the right things. I have gone on this website and read all about "sexuality" etc., but I still feel less desirable. I should probably stop reading Fifty Shades of Gray--I am sure it's not helping. . .
Anyway, thank you for this thread. It has helped me today. A few observations:
Janet--I just returned from a week-long trip in Paris with girlfriends and it was wonderful. You have to go and do that for yourself.
On the subject of overtreatment, I had a double mastectomy and was told I wouldn't need radiation. When my BS told me I needed it, I decided to get second opinions about my whole course of treatment--I also had to have chemo. My husband and I went to Sloan Kettering. The MO told me I needed more aggressive chemo and she convinced my Onc to go along. The RO, however, said I did not need radiation and asked "why are you here?" She talked to my BS, who then said, "well it is up to you." Basically the SK RO said my BS was just "covering her a**." Mmm, that was scary.
So, thank you ladies for this thread. I love hearing about your experiences. You have helped.
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Sorry. Another hour has passed and I am still reading posts and had to add that I too am not very "pink-minded" and I am not looking forward to October. Last year I was having chemo and some very bad SE's and so no one expected me to go out and enter a 5K (except one nurse at my Onc's office who clearly disapproved of the fact that I wasn't joining the doctor's team!). This year, however, I don't have that excuse, but I am not ready to jump in. I am a "joiner" and have walked and ran for charities in the past (my son is a Type 1 diabetic and we devote a lot of energy to that charity). I am just not ready . . .
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Fpdgirl, I was at my MO's today and I talked about my weight. He did offer the excuse that tamoxifen and Effexor both can have weight gain s/e. I did tell him that I have had bad behaviours and it was time to get on with it. I have signed up for cardio kick fit and will take it easy. I am out of shape and it upsets me. I am going to take one thing at a time .. Then weight watchers is next. I will know if I follow this if it is my behaviours or the drugs.
Little steps ... I know how hard it is ... Portions, healthy choices and activity. My MO talked about weights too so once I get going I will look at hand weights.
Good luck .... Don't beat yourself up .... You have been through a lot.
Joanne0 -
Thanks Joanne. I know things will eventually get better. I really was a trooper during my treatment. I didn' cry very much at all. I needed to be strong for my children. I agree with the other women on this post that we are strong for so long that the enormity of what we have experienced hits home after the treatments and surgeries are over. I also look back at the past year and can't believe it happened. This discussion thread has helped.
One thing I wanted to ask is has anyone experienced the "one-up-man-ship" competition? I have some very petty family members who basically ignored what was happening to me last year. When my husband recently pointed it out the response was "Well so-and-so MIGHT have cancer also! What? Is that an excuse for ignoring what happened to me? We found it very strange.
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I find that some people like to take any experience, and make it their own. I ran into an aquaintance who had heard about my cancer and she said to me, 'I heard about what you're going through. I've had a really bad year - I have a friend with breast cancer and I've had really rough time. I'm so exhausted'
I couldn't think of a single thing to say. And since we were at a party I said 'I can't have this conversation right now' and walked away.
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Janet and fpdgirl - I can totally relate! I still can't get over my mother-in-law saying to me (the week after being diagnosed at 33 with a 7-week-old while at a funeral for a family member on her ex-husband's side of the family), "I have had the worst week of my life. I got a flat tire and was late to work, and I lost my checkbook." I honestly couldn't even respond. It has become a running joke now with my husband, whenever I have a surgery or something stressful, for him to say, "Wow, my day at work was so terrible!"
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I so need to be here with you ladies!! I'm reading and reading and reading. It's exactly what I need to know.
I just found out 2 days ago I won't need chemo. WOO HOO!! EVERYONE is relieved!!
Including me!!
BUT (big, big BUT) I honestly feel like a dropout. Like it wasn't real cancer after all. But when I look in the mirror I see two raging scars where my breasts used to be. They're GONE??? It was as if I couldn't comprehend the decisions I was making until my treatment descelerated.
What? Yes? I'm really lucky? Yes...compared to those of you I'm getting to know who have been radiated, filled with chemo, with a year or so or maybe even year after year of surgeries and tests....defininitely I am lucky.
But I'm not ready to move on yet. I'm just starting to notice that this actually even happened.
So thank you for your sense of humor. And your broad knowledge, experience and understanding. You are amazing!!
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Welcome, Happy Raccoon - Congratulations on not needing chemo! Though some people had an easy time with it, it was extremely difficult for me. I feel like I would have had a much easier time re-adjusting to life had it not been for the physical toll that chemo took on me. This whole thing is a process, as we are all learning, and I have found such information, support, and understanding on these boards.
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I was driven back to BCO, after not going on for a month or so, after going to a baseball game where it was breast cancer awareness day. I haven't been the same since. That awareness knocked me back about 6 months. I'm done with chemo, rads, 3 surgeries, and this summer a reconstructive surgery (another in December). Lately, I read about people with recurrence and inside I am freaking out. I imagine that will be me soon. Does anyone know how to move on? I don't. Some days feel great and then the fear takes over again.
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I was driven back to BCO, after not going on for a month or so, after going to a baseball game where it was breast cancer awareness day. I haven't been the same since. That awareness knocked me back about 6 months. I'm done with chemo, rads, 3 surgeries, and this summer a reconstructive surgery (another in December). Lately, I read about people with recurrence and inside I am freaking out. I imagine that will be me soon. Does anyone know how to move on? I don't. Some days feel great and then the fear takes over again.
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Mammalou - I wish I had the answers for you, but all that I can tell you is that you are not alone. I have had experiences like you describe where things are going fine and then one seemingly innocuous thing sends me for a tailspin. It feels harder now because other people feel that I have "moved on" since the worst of my active treatment is done. I scheduled my port removal, and I alternate from feeling like this is a "victory" to feeling panicky that somehow not having a port will doom me to have a recurrence. I know that others have had positive experiences using medication, yoga, tai chi, and other things that help one develop the ability to just "be." I realize that anything can happen to anyone at any time, but I feel like we have ongoing reminders of our mortality. It's PTSD but with ongoing traumas (not to detract from people that have faced combat or true traumas).
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Hi Dunesleeper......I have been thinking about of and on for awhile. I'm so glad to find you again. How are you? Are you feeling better?........Are you enjoying your retirement?
see.....I need to catch up with you......LOL0 -
Hi Scottiee. I don't actually know how to answer that. I am bored out of my mind today -- despite the fact that there are all sorts of boring things like cleaning that I could do. I did take a short walk, so that is progress in the exercise area. Now, last night I allowed myself to go out and meet some people, and I came home so wound up it took lots of meds and 4 hours to get me calmed down. LOL. I need a life. School is good. We just had a mid-term, which I aced. I don't have much pain in the foob. It is much more comfy than the TE. I can reach with that arm. In fact, I do a lot with that arm because the broken finger on the other hand still doesn't want to work quite right. I have a lot of memories from work that are starting to surface, bringing a good bit of resentment and a strong urge to go there and tell some people off. LOL. I HATE being poor. I keep being tempted to apply for jobs. I actually did do an online application for Walmart/Sam's Club. That's not what I want to do at all, but I thought I could manage a few hours as a greeter without doing too much damage to my chances of getting disability retirement. I still haven't heard anything from that, and I'm still waiting on a response to my application for food stamps and energy assistance. So obviously, I can't go out and really do anything. That's getting me a little down.
I have my 3 month (?) follow-up with the MO next month and have to get labs done first. So, there are some things to keep me busy. I'm going to mom's tomorrow. Her brother and sis-in-law from FL are visiting, so it will be nice to show off my new body. Oh! I bought a new bra. Yup, as soon as the PS said I could wear any bra I wanted I splurged (with a Walmart gift card, lol) on a new bra. It makes me look kind of even and even gives me a little bit of cleavage.
So, that's life in the slooooow lane. How are YOU doing?
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Hi Dunesleeper......you certainly sound a lot better than you did before. I used to worry about you a lot. Having BC certainly makes you feel like you have no control of your life anymore and being poor just adds to that, of course. I know you always struggled with exercise and I'm glad to hear you are walking. They say it is still the best exercise out there and also good for depression.
I've gone through so much since we last talked. Suffice it to say I had another total meltdown and this one got me to my GP who immediately put me on an anti-anxiety med plus an anti-depressant. I am relatively fine now, back at school teaching, which keeps me busy and my mind off of BC. I am also seeing a paychologist from our local cancer hospital and that has helped too. I am 65 now but decided to keep on teaching for at least one more year, just to keep me busy and my mind away from BC.
Could you do some on-line type of work from home to bring in a little extra, I'm wondering. So nice to catch up with you again.....you have always been on my mind
since we used to chat before. Take care.0 -
Oh yeah Scottiee, I was a total mess for a couple months there. I couldn't even stand my own company. I just became so needy, a quality that is a total turn off for me. Sorry you had the meltdown but glad you are getting help and that work is keeping your mind off bc. Sometimes I do think I spend too much time thinking about it and whether it will come back and if it does that it might as well be me as opposed to someone who is out there spending time with family and doing things they enjoy. Overall, though, I am 90% better than I was. No major meltdowns in a while. Only a couple teary moments recently. As soon as I figure out what I enjoy and get myself out doing that, I am sure I will be 100%.
Now, I'm going to try to get to sleep so I can rise bright and early for my visit with my relatives. There will probably be "normal" food there too. I have been craving some normal food, and since I haven't really had any since 2/11/12, I figure I can have a cheat day. ;>)
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Dunesleeper, hope you are having a good day with the family. Enjoy that "normal food".
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Ok, i didn't know. Is October Breast Cancer Awareness month? Thanks for the heads up. I didn't know.
Talked to my counselor.3 mos PFC, 7 weeks Post-exchange surgery... on one track, so happy to be mostly back in the saddle. Yes, wig, yes, growing in buzz cut, yes Arimedex, and trying to take Calcium without tummy reaction of slowed-down digestion etc.
Another track- "what happened???" devastated and confused. Not worried about mets yet... figure I have at least a year before I have to worry about that. My docs say highly unlikely ever. Easy for them to say!
So I have conflicting realities going. Probably normal,eh?
Hey, the Replens is helping me, just had my first intimate encounter in a while, used Replense a few days before and lubrication during, and it was OK!!0 -
Hi all...once again, I am catching up on how everyone is doing and I see that I have missed a lot...
Janet...always good to hear from you. I am so glad you are doing well. I am sorry to hear about your friend's dog. I know that you have a beloved dog and I do, too. They really do become a part of you.
Rockym...you are right, things do turn around quickly and we come to accept things. I think realizing that there are things out there that I can't control was a big lesson in this for me. I have certainly learned it well.
fpdgirl...welcome. I am glad that you found us. Everything you are describing is really normal. It was important for me to hear that when I was feeling like you do now. I hope that helps. You have been through a lot, so please go easy on yourself. Btw...I had a couple of family members and some friends who chose to act like this never happened to me. I chalked it up to the fact that those people are very self-centered and/or too immature to handle a big deal like bc.
Joanne...I am out of shape and upset, too. I am having a hard time motivating myself to exercise at all. I am also having a tough time keeping my hand out of the M&Ms that are always around my house!
CJRT...congrats on having your port removed! Although I know it is scary, it is one step closer to putting all of this behind you. I loved your story about your mother-in-law. It's amazing how this experience changes your definition of a bad day!
happyraccoon...congrats on no chemo.! That is great news. You are not a dropout. You have been through a lot and deserve credit for getting through it. I think hearing the words "it's cancer" throws everyone for a loop, so chemo./no chemo. doesn't matter in the big picture. It's all scary sh*#!
mammalou...BC Awareness Day at a baseball game would have set me back, too. You asked if anyone knows how to move on. I don't think any of us have a magic bullet. I think it just takes time, lots and lots of time.
dunesleeper...good to see you back on here. Hope your time with your family was fun and full of normal food...lol!
Hang in there, everybody. We are all getting there. It's just a LONG, LONG road! Whoa...long post, but oh, so good to catch up with everyone! You ladies are the best!
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Janet, my mother has always been a drama queen, and her view of my aunt's breast cancer has always been, "And I had to see her scars!!! On my own sister!!!" Some people just make it all about themselves, and I admire how you walked away.
Also, I'm here to look back for those guided meditations you recommended. I had a rough patch lately, and my old mini-yoga routine and the guided meditation on the From Surviving to Thriving "Healing Yoga for Cancer" tape has really turned things around. (Kate also sent me "Yoga for Breast Cancer" which I'll try next.) If I can't find the person you recommended, I'll be back to ask you again!
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Almost forgot...hi lisa2012. Yes, October is BC awareness month. It's not always fun for us. We all get the "what happened?" track you are on. It gets better.
Hi Scottiee...glad to hear you are doing well and back at school!
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(Hello Rabbit and all the others!)
Found Janet's recommendation, it's Belleruth Naparstek (http://www.healthjourneys.com/br_bio.asp). I'm downloading it right away.
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Thanks rabbit. It's ok but disorienting. Well no, it's not ok but it s what it is. I'm trying to get used to my implants-they are decent and better than having nothing, but they are more uncomfortableaand less attractive than I had expected. I think I will need aphrodisiacs for sex!!
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Happyraccoon, I feel like I cheated things too. I had a lumpectomy, SNB and 25 rounds of radiation and I find myself saying "just a lumpectomy". Dumb !! I still had breast cancer and still had surgery and treatment and thankfully I did not need chemo. No one can no what we went through and continue to go through. No cheaters here !!
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Joanne! You're sweet!! Nice to meet you.
Our cancers look similiar. My onco dx is 11.
How is tamoxifen treating you? What's it like? I'm starting in a few weeks. -HR
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So far so good but I have put on weight -- I am not sure how much is the Tamoxifen and how much is bad behaviours. I was losing weight before my dx and I just gave up ... one giant pitty party. Overall I am good and I have been on it 6 months. Good luck to you .... you will be fine. Remember that it just speeds up menopause so some of the s/e are those of menopause. Keep me posted.
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Hi ladies. I've been reading your posts & so relate. I thought once active treatment ended, POOF, all would be as it was before. NOT! Just as I was beginning to feel somewhat normal I had my ovaries removed. This has been an incredibly rough week. I'm 10 hours away from family/kids with only the BF for support. I want to go home! I cried during the whole episode of Parenthood. When BF left to go to ballgame I started sobbing uncontrollably, feeling very out of control, lost, abandoned, and with the walls caving in around me. I texted him for support and got a non-supportive response. Maybe his way of dealing with my possible leaving. I hate what I see when I look in the mirror. And like someone here said, I'm having trouble convincing myself this is temporary, even though I know it is.
I'm feeling foolish. I should be happy and ready to celebrate life. My prognosis is good. So what is this crap about??? I am absolutely dreading the Femara scrip I'll be handed next week.
Thank you ladies for your words. This thread makes me feel close to normal.
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Melly- I cried through Parenthood too! I guess it brought lots of buried emotions up and I felt like I was feeling the experience all over again but not in the mind numbing way I was initially. If that makes any sense? At first I thought I might not watch the show this season but have since decided it will be good for me to deal with it. I will just choose to watch it on DVR and not in a room full of people.
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My PS pointed out yesterday that in 8 mos I was diagnosed, had a surgery, chemo, and another surgery. The 3 mos before I got the dx I had the BRCA1 and then the oopharectomy (before I knew that I had BC). So it's been a lot in a short period of time. He says now I am processing. My therapist has said the same thing.
I pulled my wig off and he took photos of my reconstructions, very symmetrical. There I was, with my almost inch-long air, my smaller firmer higher nipple-less breasts 7 weeks after my exchange....still thinking several times a day- iI came through it ok,but WHAT HAPPENED???0 -
Chicago1958-
Oh - of all the weeks not to check in! Sorry I wasn't here to give you the Guided Meditation recommendation, but glad you found it. Please let me know what you think. Her 'Successful Surgery' CD really changed my attitude about surgery, and because of that, my second operation went a billion times more smoothly,(emotionally) than the first. Next year I'll have another surgery - so I'm going to be leaning on Belleruth a lot in the coming months.
Also, I find this time of year very difficult. Not necessarily the Breast Cancer Awareness stuff - but the shorter days, the front gardens all disappearing, the promise of cold. Yuck. And due to my recent weight gain (thanks tomoxafin!) my winter clothes feel like sausage casings.
Happyraccoon - I'm SO glad to hear that you didn't need chemo! I feel like we're all on the same team, and so when someone gets a break, the load is a little lighter.
Dunesleeper - (I think of you as Dragonslayer) - it is always good to hear that you're doing well, and having followed your ups and downs from the beginning, it's been really inspiring to see you forging ahead, making changes, overcoming obstacles, and keeping your sense of humour.
And Rabbit - nice to hear from you to! I'm eternally grateful that you started this thread - it's been my life raft on many occasions.
It's Sunday morning, the last day of September, and I'm off to walk the Jed the Basset Hound. If I need to find a reason why I'm not getting more cardio, I can point the finger directly at him.
Take Care Everyone,
Janet
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