Why was I stronger DURING treatment than I am now?
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You guys make me feel "normal"... The things that are talked about are real...we are all just trying to find our way again...and your right Raider Girl. I am mourning the person I was before. It was a year ago in September that I went for that fateful mammogram (with DH waiting in the car with 2 dogs as our house had a showing). I was so sure it was another cyst. I was finally enjoying my body and my new boobs (my BA was done less than 10 months before I was diagnosed) and I had finally lost the 35 lbs I had wanted to lose. I so just want to feel normal again...I hate the way my DH avoids "the" boob and I hate even more how I have lost all feeling in it
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2Tabbies- I shared your brilliance with my MO today at my first PFC follow-up appt. I don't know why, but he didn't think NLFD was as funny as we do.....
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Went to see rehab specialist at hospital today. Trying to use my weak arm on node side without full range has over stressed the shoulder. Now have bursitis It's a tug of war with my chest scar. Neuropathy in feet make balance an issue. AI makes whole body hurt. I showed her a video clip of me at work BC (before cancer). Hardly recognize the person. All that energy loma like the Energier bunny.
The first 6 months diagnosis, surgery and chemo were easy. This new me is the hard part.
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JJOntario, I get what you are saying about your DH avoiding the foob, mine does the same. When I mentioned it to him he said he knows i don't have any feeling there so he doesn't bother (I've never told him the other side that was reduced doesn't actually have much either 😟). I understand the reasoning but still would prefer it if he would try and treat them as equals so I'm not constantly reminded of not being 'normal'
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Yikes. Y'all are reminding me that I owe it to myself and to DH to have sex, again! Linda
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Haha Linda, yes it's very easy to let intimacy slip, especially when your body is being subjected to prodding and testing by others or recovering from yet another surgery. Still it's important for our own wellbeing to stay connected with our other halves. Note to self
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Jackbirdie, I have no intention of sharing NLFD with any of my oncologists! Well, maybe if I'm feeling really cranky when I see them, I will. I'll probably share it with my PCP.
I resonate with what everyone is saying about not being the same person and mourning the "old you." Me too.
BookLady, sex? Can you still do that? You're lucky. I can, but only with lots of pain. Another thing that sucks.
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Hello Ladies,
I have been out for a bit again. I just finished reading up on the thread.
I am definitely not the same person either. My balance and steadiness on my feet is crap. I was never particularly graceful in the first place, but now the neuropathy makes it a lot worse. Same with my hands. I drop a lot of things & my grip is terrible also.
My MO SEEMS to be a little more aggressive than what I was reading from all of you. Perhaps because of my HER2 + status. I have blood work before every appointment with her, so every 90 days. She is going to try and get me another PET Scan before the end of the year. My last one was in Nov. 2014. She is not sure if insurance will pay this year. If they will not pay for a PET, she said see would do a chest X-Ray. I am thankful she is so cautious. She is also having me keep my port until next March...a year after my year of Herceptin.
I think I only have 1 fill left for my tissue expander. I am up to 425. Yay. Hoping to have my exchange around Thanksgiving. Just cannot wait to be done.
Good luck ladies. The pictureS you have shared are beautiful.
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also, the heat does not help the neuropathy at all. It makes my fingers & feet worse.
I am trying to increase my effexxor for my hot flashes. I have been miserable from the hot August days. Since my ovaries coming out in April, I am a big sweaty mess most of the time. The husband has a hard time with the central air being set at 70, but I swear I cannot be comfortable unless it is chilly in the house.
We had been planning a driving trip to the black hills for next week. I cancelled last week after deciding there was pretty much no way I could be out in 100 degree days hiking and sightseeing. It makes me a little sad, but was for the best to cancel.
On the job front. Excellent twist of fate. One of the bosses resigned, and my new boss is a wonderful person. I know she will be good to me and appreciate the hard work I do. She will not allow the shaming about using the health insurance. Definitely a good thing until I can leave.
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Smart, I'm glad you've had some good news on the job front. Mine got worse this week. My boss wants us to do work way above our pay grade. I know that makes me sound like a slacker, but this is technical stuff that I don't know how to do. I could probably learn it eventually, but in the meantime it's stressing me out. I also think that I should be paid for the level of work I'm doing. But it's the stress that's really getting to me. Summer is hard on me too. Lymphedema gets worse in the leg, Hot flashes worse. I'm glad you have an MO who believes in doing some monitoring. It would be interesting to know if it is because of her HER2+ status. Could you ask her? What blood tests does she do? I get a chem panel, CBC, and a check of my IgM levels every 6 months, but that's for my Waldenstrom's.
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I'm off work this week. Just a great week to putter in the new house. Cooking in this new kitchen is a dream. Having time on my hands I had a good look in the mirror today. Right after rads I felt so fortunate because my size hadn't changed so dramatically...but today I noticed that the skin has really tightened and it now sits up a lot higher than the other. I'm not sure how much higher it will go?To some it might not be a big deal...but to me it just sucks. Having breast augmentation 10 months prior to my dx still wonks my head. Even though my DH says it's no big deal I'm anxious to fix it. I feel like for many years I was so busy being "Mom" and I had no time for my appearance. When I finally lost 35 lbs and got my boobs prettied up...this hit me in the face. It's almost like punishment for being vain. That's my rant for today
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I can understand why you feel that way, I had the opposite thought process - I always hated my big bust and then after having and feeding four babies they were in very poor shape and I hated them more! I felt like having one removed and all the surgeries to rebuild plusremodel the other one was punishment for hating on them! Of course people were like oh you're lucky you will get a new perky set but it didn't feel like that to me, only painful, disfiguring and frightening.
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I find it so funny that we look at our outcome as a punishment for something that we did, or what we are. If that's the case - it's a pretty sever punishment, much harsher than any crime of vanity. I occasionally wonder what I did to deserve this and I've come up with nothing. I didn't deserve it at all. I had a normal level of vanity and teenage bitchiness. I was definitely too judgmental at times, but cancer kicked that right out of me.
So if it's a system of punishment, then it's also a system of rewards. So I try to reward myself after every procedure or crummy day, chi*tty procedure, or tiny triumph. It helps. (I should mention that I don't have kids, so it's a lot easier to make it all about me)
JJOntario - I think that having one breast higher than other is a big deal. And you deserve to have the boobs you've always dreamed of, as well as the time to focus on yourself. But when I read your post I had to laugh cus when you ended it with 'this hits me in the face' I thought your were referring to your higher boob hitting you. Quite a visual!
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Hi Ladies!
Boy, do I need to read your words! I am so glad I am not alone. My cancer dx anniversary is in a week, and what a long year it has been.. I am so tired and incredibly sad. I feel like I am clawing my way out of a very deep hole. I have to remind myself one doesn't just bounce back after the horror of the initial dx, 6 rounds of chemo, BMX surgery, 28 rounds of radiation, and 11 Herceptin-only treatments. It is unfair for me expect a quicker recovery. After what I have been through..? Today, I have decided to be kinder to myself--I deserve that.
I am looking forward to getting to know you all!
Amy
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Amy- welcome, and good for you to decide to be nice to yourself today. I call that dark place the rabbit hole, and I struggle to stay out because the sides are slippery.
You have had a long, hard, year. I'm glad you found us. A hug and some mojo coming your way.
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2Tabbies, I had my port flush today, so asked what the blood tests were. My MO does 3...regular CBC, a hepatic panel because my liver did not like chemo, and a CA 27.29 Breast Tumor Marker. I will ask my MO when I see her why she orders them...if it is related to my Her2+ status, or just her general rule on BC. My PET scan has not been approved by insurance yet, but still hoping to have that before my exchange surgery in December.
JJOntario - I hate that wondering on what it could be that caused this. Sometimes I want to scream. I don't think most of us will ever know, and even the theories I hear about deodorant, bras, exposing your tissue to the air during surgery, etc. all sound ridiculous to me. I don't understand why both my husband and I had to take one for the team for having cancer young...he had testicular cancer in our 20s. You didn't and don't deserve it, none of us do.
JackBirdie, I call it the rabbit hole too. It is a dark place of fear and anger. I hate that hole.
Amy, Good luck to you as you hit the anniversary. what a crap one to have right? I need to follow JanetM's advice and do more to work on the reward part. Be kind to yourself and gentle with your self talk.
Today is my last fill. I am excited that I will hit my goal of 440 cc/ml. It is a completely arbitrary goal because it does not relate to size...it is just 10% over the 400 that I wanted to hit (doc thought I could get to 350, so for some reason I decided I needed to get an A+ in expansion on that radiated side and get to 400). Today is the day I get there.
I am taking tomorrow off to go and cheer on the 3 day walkers for the Young Survival Coalition. While my feelings about Komen are confusing, I do appreciate the people who spend their time, treasure and talent to support finding a cure. Tonight I will use my old cheerleader skills to make some great thank you signs. Maybe that is my reward...going to cheer on others & having no responsibility to make anyone else happy but myself.
You are all amazing.
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3rd lump on recon breast being removed tomorrow. 1st fat necrosis, 2nd Keloid scarring... My, I am sure sick of this. Cannot have the 2nd stage done whilst this is ongoing. Nearly 1am here and I am feeling so weary ...
I hate that they gown up, scrub up, in a proper big op theatre, with me watching it all, then they swing over that industrial light (get temporarily blinded) and I am sweltering.. The lump (small) done under local yet I can;t feel a damn thing anyway. After all these years and I still seem incapable of putting that gown thing on without getting it wrong, tie it wrong, back to front, inside out... usually it flaps open as I am stumbling to get off the table...
Feeling stressed...
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Hugs Wintersocks. I always seem to get the gown wrong too. Hopefully sleep will overtake you soon. I can always face things better in the morning. Evenings always seem the worst. Pamper yourself, you deserve it.
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I am not taking any more vacation...I have too much time on my hands. I found another bump...large and squishy, moveable....another cyst most likely as I was cystic before (my tumour was found hiding behind a cyst). I'm also pmsing....and tamoxifen heightens my emotions to a new level so tonight I'm biting my tongue as I could easily pick a fight with my DH.
Wintersocks...I hate those gowns. They only give the illusion of modesty!!!...that is if we have any left!!! :-)
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DaisyQ, welcome. This thing is a long, long haul. It is wearying. Just know you're not alone. I'm an Amy too, btw.
Smart, thanks for asking about the blood tests you get. I do get a CBC and chem panel, but as I mentioned, that's more for my "other" cancer - Waldenstrom's. I am interested in whether your MO is ordering the tumor marker test because of your HER2 status. My MO said tumor marker tests are unreliable so he doesn't bother with them. Maybe it's different if you're HER2+.I hope the last fill went well. Congrats on hitting 440! :-)
Winter, I hope you're able to relax and sleep, and that the current lump proves to be nothing worse than the last 2. Enough already though. I hope this is the last one.
JJ, I agree with Janet. If the asymmetry you're seeing bother's you, it IS a big deal. I've got some relatively minor asymmetry with my rebuilds, but I want to try to get them as evened out as possible. It's noticeable even in clothes if you look. Probably, nobody does except me, but I still want it fixed.
And finally, none of us did anything to deserve this or cause it. It just is.
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WS- thinking of you....
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2tabbies and jackbirdie,
Ok, saw the registrar after I was all prepped, She took a look and after some umming and arring decided that the lump thingy does not need to come out. It isn't a discrete lump like the others and she said this is just scar tissue. So I was spared the whole delumping experience and kept all my clothes on. No gown! jjontario, glad it's not just me then.
She does want to see me in 4 weeks to take another look, but I was very happy
to leave the hospital. Today my youngest is back from what sounds like a difficult holiday, so that pleases me too. So, thanks for all your support. I do hope everyone is having a good Saturday, it's beginning to feel autumnal here.
Oh yes, 3 years tomorrow since my dx - that feels unbelievable.... not jumping up and down tho, just some quiet reflection here..
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wintersocks & jjOntario - sorry for the lumps. That must completely blow your mind & bring you back to ground zero.Sucks. I hope you have a nice 3 year reflection winter.
2tabbies - I will ask why my MO does them. She does not really talk about them, but they have been in the normal range, so perhaps that is why we haven't talked much about them. I see her on the 17th.
I went to a Young Survival Coalition event yesterday to support the Komen 3 day walkers. It was really refreshing to be around women, in person, who have been through the treatment shitshow.Regardless of Komen's crap, I am amazed at the people who step up to volunteer. There was an older gentleman who lost his wife 20 years ago....he said he would walk until he can no longer physically do it.
May you all be side effect and pain free this weekend.
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WS- what a relief. I'm glad.
Smartass- I feel conflicted about Komentoo, but when you get down to the human unit, it's amazing. What that man said about walking until he couldn't swelled my heart.
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I have been really trying to just get on with life. I am still unhappy and conscious of my mutilated, lop sided state, (not my choice, an inhumane system means i can only start recon in 4 years minimum, I cannot afford any more private attempts), but I am focusing on life, stopped taking Aromasin as felt sooo weary old and never rested on it amongst loads of other side effects, so I do feel more like my old self, except for the lung problem and the constant tightness on my non breast chest....
Anyway today I went out for lunch where there was live music and I was happily singing along to an old song I love when I suddenly thought, mid song, "and she died of breast cancer".........I was happy, relaxed, having a good time, not under influence of alcohol, and a cold grip grabbed my gut out of nowhere - 3 years and 5 months post diagnosis - WHY? I did have PTSD and needed therapy for it from my BC experience BUT why now when I am feeling good and not even aware of or thinking about cancer, no mention of cancer by anyone, no triggers at all.......
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I don't know why, Lily, but I'm sorry your moment was spoiled.
Maybe still PTSD?
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Hello Lily: Fellow "lopsider here". I hope you have many more of those nice moments without the BC thoughts creeping in.
This is what happens to me sometimes. I was very happy, healthy, more carefree and energetic (to say the least) right before I found my lump. Now, when I feel moments of happiness or find myself laughing or joyful, I get a sudden panicky feeling. "Don't feel too good or the cancer will come right on back" . I know it's a subconscious reaction, which I hope will lessen over time, but it just, at times, feels scary when I feel a little of my pre-BC self rising up. It's hard to explain but I am glad you had those moments before that thought crept in. Wish I could have been there to bat it away and pull you on to the dance floor or something.
Love, Purl
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Just reading through the posts...Am I the only one that looks at pictures and thinks "that was before BC"...and that was after BC. I never imagined that a little bump could cause such impact. I see my BS in a few weeks. There was some debate (actually a panel viewed my case) in that there was DCIS in one of my margins but my tumour wasn't oriented so it was explained it was the side closest to my chest wall and they couldn't go any deeper. It still makes me anxious to have a mammogram and get the all clear and good. I keep hearing the word "scanxiety" which pretty much sums it up!!! September brings memories of when this whole crazy time started....a whole freakin year of this...like OMG
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I can be having a nice time at the beach and out of no where wonder will I be able to be here to enjoy it next year? It's like the calendar. BC and AD. Only for us BC isn't Before Christ or Before the Common Era. Even my DH is having this occur. He other day he was asking me about having the kids tell us what jewelry pieces I should leave them. I hope to wear them 30 or more years
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I hate that panicked feeling. I am not sure I will ever feel ready for the "post" part, but definitely feel like the traumatic stress part is right on. I hope it does get less, but I am not sure if or when that will happen, especially since there never seems like much of a break from the doctors.
The BC/ABC has been on my mind a lot lately I decided over the weekend I need to do something to get my weight under control again. I probably had 5 to 10 pounds I did not need BC, and now i have fifteen to twenty. So, I decided to join weight watchers & also plan to try to get more active again. I have a three month break until my exchange, so I joined for 3 months, and am hoping I do a good job and get closer to a good place before my exchange. I started today.
I am hoping by that 3 month mark, my hair will also look less like a poodle and more like a person. A girl can dream right?
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