The Hermit Club
Comments
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I am finding it hard to have normal conversations with people these days, my irritation level is very low and I have no tolerance for hassle......and I look back on conversations and think I am not sure I even said what I meant......I just do not feel part of the "normal" world again
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Lily I think u nailed it---what's normal nothing to me----I used to have routines now I don't. But I don't like to use the term of "new normal" because this is just life--everyone has changes and feels differently thruout life for all different reasons which we just should accept. But yes it's easier for me to be a hermit cuz sometimes my brain is like mush and I don't feel like being around people, or I have pain and I don't feel like being around people so to me it just a new side of life. My feelings are different, my acts are different but deep down I'm the same good or bad it's about the same. LOL
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Lily, amen to that! So true.
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Thank you my dear friends.
Teka- I started taking the meds every 3 hours instead of every 4. That is helping. Hopefully I will be able to pull back on that a bit now that the days are passing.
Skittle- thank you for the info about Arimidex. Big hugs to you.
Jazzy- thank you for your kind words. Thank you also for sharing your experience with Oncotype score and Arimidex. XOXOXOXO
Marilyn- thank you for the "rear view mirror" saying. I love it! I keep saying, "See you on the other side", but that could be interpreted differently. Lol! Thank you also for the info on the hot flashes. They are already so bad, I can't imagine them getting worse because of the Arimidex. Ugh. Well, it's good to know there are options.
Camille- no back pain- just chest pressure/pain. I'm sure it will disappear soon. Thank you for caring.
My son went to Utah this weekend to pitch. He did a great job and looked solid. I hate missing those trips, but I have to heal for Omaha.. We have had a houseful of baseball boys swimming at our house today. I could tell they felt awkward seeing me for the first time since my surgery. Poor teenage boys. Guess what the teams did though? The coach ordered pink breast cancer stickers for all three teams and every boy put one on his helmet! It is to honor all of us! I was so touched. My son wears it so proud.
Well ladies, I am going to watch some TV now. I hope you all have a restful night with sweet dreams.
Xoxoxo
Laurie0 -
Laurie how proud u r of u'r son--I love it and how loved u are by the community--I love that too. Heal nicely.
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Laurie... wow. What a great mom to be raising such a sensitive young man. Glad his team supports him/you. He'll make an amazing young uncle! Best wishes for a low number on oncotype! (Mine was 19...) And prayers for your healing and lessened pain. Gentle hugs...
Camille...have a good week ahead. Hope your energy is up and woes are down.
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Goood Morning Hermits, so excited I don't have to go out today, it is raining also, along with the "no car" part....
I agree Lily!!
Laurie so excited that you get spend time with your son and his friends, they will remind you that when things change some remain the same....awesome that the coach is that sensitive to the issue...
Cammie...HUGS!!!
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Oooh i am glad i am not on my own.......!!
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Lily you sure aren't.....glad you are here!!!
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Oh Lily we're here for u, may not with so much knowledge of everything but we're here and caring about everyone, cuz we know.
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Dear hermits- it was hot here yesterday (100 degrees) and 103 today! I have Linda Rondstadt's "burning like a heat wave" rocking through my head today.
Been in the comfort of an AC building today, but soon I will head out into the blast furnace.
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Love the rain ladies. I'm sad to say that we don't get much here.
Just saw my reexcision pathology online and the margins part says, "DCIS present focally". There are no mm like last time. I see the doctor again tomorrow.
Thoughts?0 -
no thoughts, good luck tho and let us know!!
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Laurie- I found this link for you on DCIS and it talks a bit about the margins, foci, etc. that may help with the question about the margins. Just be sure to just highlight those areas in your path report you have questions on. It is always good to make a list of questions before you see the doc so you get all the best information you can so you know what the next steps in the treatment process will be (and/or what options you have). It is overwhelming when you are sitting in front of them with all the unknowns, our personal fears around the whole thing, etc.
http://www.dcis.info/biopsy-examination.html
Good luck at the doctor and let us know how it goes as you wish to.
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Thanks Jazzy. I read it. It just confirms everything I already knew from the first pathology. I can't seem to find definitive answers on explain actions of pathology from a reexcision. I assumed they would read similar tongue first report, but it is different. I believe my gut already knows the answer. I will just have to wait until tomorrow.
Thanks for the love, support and effort.
XOXOXOXO
Laurie0 -
Yes Teka...I believe you may be right.
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Laurie that sounds about right???????? But really those are all right not at all like chemo--nothing.
Well just let us know exactly what's going on.
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Laurie - I've been thinking of you. I hope your appt goes well. Is DH going with you? If you need radiation it's not so bad. My friend had it too and says her boob is still tan
mine got red but now is normal color. The only thing that tells I had radiation are my lovely blue tatoo dots Keep us posted. You are loved.0 -
I feel so far behind on posts and concerns. (Sorry--had two straight days of "professional development" and had a brain of Swiss cheese by the time I left the seminars.)
Laurie--Hugs and warm thoughts your way. I never had rads, but my mother did. She tolerated them very well (at 75) and even insisted on driving herself daily. She did have moderate fatigue, but not life-altering. Best of luck and love to you.
Camille--you ok? Seems quieter from your direction.
Blondie--hoping you're coping.
Teka--I envy your rain. It seems to simply stop here... and stays hot and dry all summer. ick. We have 93 about now, and humid/thick air. Dry, dry ground.
Jazzy--103?? We usually wait for July for those temps. Hope your a/c is good and strong.
Lily--surviving? Concerned about your stresses.
Lori, cvmarilyn, bgirl, fl, and all... hope June is being kind. Time goes so quickly.
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Thank you for thinking of me...I have been for a consultation with a recommended plastic surgeon and what I was told has really upset me so much so i dont know what to do with my feelings, they are bottled at the moment but the instant i think about it i am in tears.....he was very professional but my original treatment denied me my right to have an immediate reconstruction at another hospital if they could not offer me it, and now due to other scars i cannot EVER have a breast shape that will not be loads smaller than other one and due to the radical mx surgery and rads chances of success are lower, and now i have to pay for it all as local hospital still denying me recon when it is still a right.......I asked about immed recon several times pre mx and they told me no due to needing rads BUT PS says ths is info over 15 years out of date for autologous recon, so i have been through hell for 13 months unnecessarily and now can NEVER have normal or symmetrical breasts again.....and he poohpoohed the BRAVA and fat transfers and said only useful for filling in not a total recon and with my condition could not work anyway.......
I feel guilty as its a cosmetic i ssue but i am soooo unhappy as I am.0 -
I think i am also shocked at hering a surgeon say it was a radical surgery, i always thought it looked and felt like one but no doctor said as much before
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Laurie any news?
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Thank you beautiful friends. I was reading your messages while waiting in the doctor's office.
Results from re-excision are as follows.
Margins not clear. Cancer at the skin and chest wall. STILL not invasive. There is no more tissue that can be taken, so radiation is the next step. I am being assigned an MO and RO. Will know more after I meet with them. It will be awhile as we leave for Omaha next week.
I am surprised, but doing okay. My husband is being amazing and that helps. For now we are in a holding pattern and won't know much till we meet with Oncologists.
Lily...God bless you...I am so very sorry about your sadness. I want to validate your feelings. We are all here for you! Marilyn-you are the sweetest. Thank you for your note! I read it to my husband BEFORE we got my news. He thought it was so sweet. Jazzy, Blondie, Teka, Camille, Skittle, love to all of you. Thank you all for your support.
XOXXOXOXO
Laurie
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Laurie someone else has to read u'r results and translate for me--I have no idea what is being said---I'm sorry I tild u I know nothing about cancer.
Lily--I am so sorry I can not believe this was done to u--Shouldn't this have been figured out a while ago with u'r Drs,? Something has to b and can be done--I don't get why not. Women have this after and if the Dr. words things right it's covered---I don't think It's so much cosmetic like it used to be anyway. EVeryone has to figure this out--Don't be sad YET or mad--someone wilk be thinking. Really
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Thanks Teka
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@Lily55, have you thought about getting a second opinion on plastic surgery? The first PS I talked to said that at 5'7" and 123 pounds, I was too thin for any type of autologous reconstruction, but when I talked to another PS who actually had experience in that kind of surgery, he said DIEP was possible for me after all. That was before my mets diagnosis, so my reconstruction plans have changed, but it may be the surgeon you have talked to so far has only told you what he (or she) can do, not everything that's possible for every surgeon. I'm guessing from what you've written about difficulties due to your previous radiation treatment that the surgeon you talked to was planning to use an implant. It's true that you can't have immediate reconstruction (since your treatment was some time ago), but I think it's at least possible that you can have a flap surgery that will give you a breast of natural shape and correct size. To find out, you need to talk with a surgeon who does DIEP surgery and ask what is possible for you given your body type and treatment history. I have been to several meetings of a breast reconstruction support group sponsored by the hospital I was planning to have surgery at. I'm particularly thinking of one woman who had lumpectomy & rads sometime back in the 1980's and when cancer recurred on the same side last year she had to have a mastectomy. She's as thin as a rail, and her mastectomy was very flat, with hardly any flesh left over the ribs, but the surgeons were able to give her a natural looking well matched breast shape.
And never feel guilty about wanting reconstruction! It's not "cosmetic", it's repairing the effects of previous medical treatment. You don't say where you're located, but I believe if you are in the US you have a legal right under federal law to have your reconstructive surgery, whether it's delayed or immediate, covered by the same insurance that paid for your mastectomy (assuming you are still on the same plan). Meeting with a patient advocate or nurse navigator to find out exactly what you're entitled to might be a good idea too.
I hope you can soon find a PS who is able to do the surgery that best meets your needs.
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The surgeon specialises in all autologous procedures......I am not in USA, Implants never mentioned, i was deliberately misinformed.....this was a second opinion, i will get more but i find it emotionally hard to do i hate being seen let alone assessed for spare parts!
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Lily then get a 3rd opinion.....so sorry that this is happening...
Laurie...radiation I guess it the ticket, as I said I got my lumpectomy and then a month later then went to get the lymphnodes and took more margins along with 14 nodes, that was in 1996, he didn't think there were enough margins...I am small breasted, don't know if that has anything to do with it....
Chemo was ok, got zometa also was there from 1130 to 430....with the premeds etc and they gave me almost 1000liters, had to stop it to leave....had to borrow a car and had to pick up DIL...next week it is Thursday, they are booked on Wednesday.....whatever...
Sandy
Sandy
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High ladies- a bit cooler yesterday (meaning not in the 100s) but still hot out west. The heat makes me tired and cranky!
Lily- such upsetting news. I agree that you may need to seek others for consults on your condition. Here in the states, many of us have to go to other parts of the country for medical treatment if the best options are not located in our cities we live in or are close to. I went to AZ for my radiation treatment as the best type offered for my situation was not offered where I live. Not sure if that is an option for you based on where you live, or if you can even consider that financially but once you have recovered from this recent news, maybe think about what else you have options for. My heart goes out to you.
Laurie- several of us here have had radiation and can be here for you as you go through that process. Mine was internal, which is the less common type. Most women do external beam, which several have mentioned here. Many are able to work some while they go through it too (I did) but you need to be the judge of that based on your energy. It has a level of fatigue associated with it no matter what kind you do. Good luck with the MO and RO visits. They will bring good information.
Have a good day hermits!
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Thanks Teka - he wanted me to be very clear about everything as I think he could see he was not starting with a good playing field!! The other one I saw was resolutely optimistic about the fat transfer technique and against DIEP now this one is the opposite....I just feel upset and cheated by so called doctors who just saw cancer and not a person who has struggled to live in any kind of happy carefree way since the mastectomy, this has really upset me and I asked and oushed for immediate recon, referral to different hospital etc etc at the time and they simply refused......and there is no system to self refer here
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