October 2014 Surgery Sisters

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2015

    Slavich you must be so frightened! Things are rarely as bad as we think they are going to be, but that doesn't keep us from worry. I could just smack the people who say, "Oh, don't worry. You'll be fine." After what we've been through already, OF COURSE we're going to be nearly in a panic! Sounds like they are going to get you to the specialist soon so you won't have to wait too long to get to the bottom of it.

    Hopeful, sorry you got the flu. I had no understanding of it until a few days ago when I came down with the flu. Can you believe I never had it in 66 years?? I only get colds once every 4-5 years. The flu is awful...I was pretty much incoherent for a couple of days and slept around the clock. Now I try not to cough anymore...my body is so sore. My daughter had it about 3 days before me. She's still dragging a little at the 7 day mark so I won't plan to do much this week either. It's really good that your surgery was cancelled. Trying to deal with recovery and flu at the same time sounds like hell to me.

    I also got a surgery cancelled at the last minute so I understand how you both feel. We were literally opening the front door to leave for the hospital when they called and cancelled because of some sky high thyroid lab results and possible thyroid storm which could be fatal. Talk about shocked!  When the same test was done two days later, it was fine which made no sense. Even with treatment, it should have taken a month or more for the levels to drop. Fortunately I was able to get in to see the endocrinologist that week and get to the bottom of it all. He had to review about 5 years of my medical history. Turns out I have an antibody (from a prior blood transfusion) that only reacts when a test is done that uses sheep products. The lab used a different kind of test than the one usually used so the results were different because of the way they performed the test. When it was repeated the usual way, it was back to normal. So weird things happen. Tests can be wrong. Keep the faith.

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  • mefromcc
    mefromcc Member Posts: 188
    edited April 2015

    Got my drains removed today! Unfortunately, more stitch abscesses had to be opened and drained and packed. 😒 Seems I am reacting to the different type of suture material used. The PA snipped out all of that type of sutures. Hope that does the trick.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    I hope so too, Mefromcc! and congrats on losing the drains. I'll bet you feel like an almost new woman.
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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited April 2015

    Julia,

    I'm so sorry you ended up with the flu. Ive truly only had "the flu" a few times and they were very memorable and miserable experiences. Probably for the best that they caught it. It's been 5 weeks since my surgery and I'm STILL exhausted! You certainly don't need any extra curricular obstacles!

    Have they rescheduled your surgery yet?

    Kim

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Thanks, Kim. I appreciate your thoughts. It probably is for the best; I just took a much-needed shower and barely made it through, so surgery would have been a stretch, to say the least. I'm now on the books for 5/6 - postponed by 2 weeks. I'm not looking forward to going through all the household prep and psychic tension again...

    I'm sorry you're still exhausted from that last surgery, Kim. I imagine your body has just about hit its limit and each new step takes more time and resources (already depleted) to get back to where you started. It's an amazingly long, complicated process, which is something I was totally ignorant of until all this was unleashed in my life. I'm sure both of us would have been happy to go through the rest of our lives ignorant of the details of mastectomy and recon. Hang in there, Kim, and take is easy.
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  • Slavrich
    Slavrich Member Posts: 50
    edited April 2015

    Hi Everyone,

    Hopeful, sorry to hear you got the flu and your surgery was cancelled. It is emotionally draining to get prepared again.

    Thanks to all for the support. So, I saw the doctor at an evening appt. on Tuesday. I was alarmed when they had an evening appt. with the liver specialist the next day. He calmed me down and said this is a new thing the Hospital is doing-having evening appts., so referrals like me do not have to wait a month to be seen.

    He said he was not thinking liver cancer. (I hope he is thinking right...numbers would probably be much higher). The cat scan from when I started this last year only showed a fatty liver due to me being overwieght.

    I went today and had 35 different things tested in the 8 vials of blood they drew after fasting. Most of the results are already online. The bad one did increase again(only 8 pts.-better than doubling like last time)-ALT(U/L). The previous level was considered mildly high-being 3X the recommended level. It is now 4X the rec. level. The AST did not change, but is stil 3X the rec. amount.

    So far, everything else is within the rec. ranges except the WBC is low...3.78 (4.5 is low end of normal range), but that has incresed from 3.47.

    The RBC was high last time, but now at high end of normal range. So everything else seems like its heading in the right direction except the ALT. I know Tamoxifen can affect the liver-and is a carcinogenic. Is this something I really want to continue? I'm getting the other breast off and a hysterectomy, so what is it going to prevent?

    Still waiting on the hepatitis B & C results, celiac, and immunoglobulins tests.

    So I again need to quit reading the worst on the internet and wait to hear from the liver dr. He said the next step would probably be an ultrasound just to be sure nothing else is going on.

    He will be doing some calculation that will measure the scaring in the liver if there is damage. He did say that losing weight will make the liver healthy and not fatty and that it could be a healthy liver again. I have incresed exercise and am watching what I eat.

    So, hurry up and wait...patience is a virtue.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Sorry you are back on the hurry up and wait program again, Slavrich, and what the heck is going on??? At least you're getting in to see these MDs in a somewhat reasonable time frame. When will you gave the US? tie care of yourself and please continue to keep us updated.
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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    Kim, how are you doing this week? Revelle?
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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited April 2015

    Julia, you are always so thoughtful to think of everyone else! I have a sticky note on my computer at work with your name and 5/6 so I can remember to send happy thoughts your way.

    I'm ok. Some days are better than others and I'm due for another fill tomorrow but since she's backed them off to 30 ccs, it's been much more do-able.

    These things are just uncomfortable but oh well, it is nice to have some shape back even if they really don't look like much right now.

    How are you?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Hi, Kim - good to hear from you. How many more fills do you think are ahead still? It sounds like it just drags out... I'm glad you're seeing some shape again, even if you do feel like you have to use your imagination to get the full effect.

    Thank you for asking, Kim. I'm doing o.k. - really busy with work and some family things; this week is totally crazy, in fact. I'm still having some stomach issues but am not going to say a thing to anyone in the medical world until after surgery. It isn't nausea, so I don't think I'm taking a risk, just that my stomach doesn't feel right.

    The upside is that I've lost weight with all of this so my clothes look better. The downside is that NONE of my summer pants - capris, etc., from last year will be wearable this year. Thank goodness my upper body doesn't change as drastically.

    Are you starting to get your energy back, Kim, or just kind of going through the motions? Even if the fills aren't as challenging as before, it still takes a lot out of your body simply adapting, dealing with the pain/discomfort and still continuing the invisible process of repair. Go on taking it easy, sit outdoors when the weather permits and soak up some Vitamin D and Vitamin N (nature). Both are good for the body and soul.

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  • Fourminor
    Fourminor Member Posts: 354
    edited April 2015

    Hi ladies!

    I'm calmer now. I had to take a break from thinking about all of this!

    Hopeful, you had to go and get the flu, now? I'm sorry! I noticed that my sense of time passing slowed down immensely while all this was going on and sped right back up when I went back to work so I think that all of us were really knocked out of psychological normalcy in ways we can't even appreciate until it passes. Having a surgery postponed by even two weeks is heartbreaking; iTs a lot of mental, emotional, and household preparation. Whereas two weeks in "normal life" is a flash in the pan. Try to have faith in the way things are. That's all I can do when things are not going how I wish, and it helps. Maybe that day your surgeon wouldn't have been as on his or her toes as he/she will be for your next date.

    Slavrich. More than 70% of people have a fatty liver on ultrasound. Even mine looked a little echogenic to me and I am not overweight. Its kind of shocking to me how prevalent organ damage is in our society and I firmly believe this is sugar toxicity. We are all eating WAY TOO MUCH sugar for what our bodies can safely metabolize--it was put in everything to make it taste better after everyone tried to make and eat low fat products, and that's a huge cause of the obesity epidemic. But it is no less toxic than alcohol. The WHO suggests no ore than 25-50 mg a day--that's what's in one yogurt! Look up Dr. Lustig's lecture on you tube, Sugar The Bitter Truth. He is a pediatric endocrinologist at UCSF. ITs free, entertaining, and eyeopening.

    As for me I saw my breast surgeon yesterday who was impressed with the outcome of the recon (although a dreaded ripple has shown up medially at the upper pole when i am not in a bra which I have to discuss with my PS in June.) She however said that hormone levels are notoriously difficult to interpret with ovarian suppression and they are just putting women on the OS and AI together at the same time for that reason. So even though my ovaries are basically useless to me, I can continue suppression and start AI now, once I confirm this with MO. Yay! I bought myself a new yoga top (and yet another wireless bra) in celebration.

    Gotta to I am gonna be late. Hugs to all. Sandra, how is Mike?

    4

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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited April 2015

    Julia,

    I am hanging in there.  I just went in for another fill today, another 30 ccs.  She said I'll need at least one and probably two more and then I'll be DONE with fills and get to take a three month "break" to rest up.  Yippee!!  I'll be honest.  I feel tired.  When I tell friends that, they look at me with wide eyes and say "of course, you are, look what you've been through" and while I appreciate their sympathy, I know I've had it so much easier than a lot of the ladies here.  That being said, I'm just feeling a bit strung out lately.  Work is busy, and I'm sore and the thought of yet another surgery makes me want to vomit.  We talked about that next surgery a little today.  It will be out patient, drains are a possibility and it will probably be towards the middle/end of August.  Thinking about that REALLY makes me tired.  And then if you throw in the financial aspect, it's a bit depressing.  This is certainly not an inexpensive journey, even with good insurance.

    Anyway, my next fill is the same day as your surgery, May 6.  Can you believe you're finally going to get this done?  I can't wait to hear that your tumor is pretty much non-existent and the node is clean and all of your time spent has paid off, big time!

    Like you, I've lost some weight and that has been a pleasant surprise.  Capris and shorts that were snug last year are loose and comfortable.  There's the silver lining, right?  New Summer clothes!!

    Four, good for you on taking a break from BC.  I hope I'll get there someday too. 

    Hello to everyone else.

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited April 2015

    Mike is doing GREAT! We knew that with his disease, chemo was not going to cure it or even lead him towards a remission, but we were hoping to get a month of decreased progression of disease, and we got it and then some. The oncologist is optimistic that Azacitidine will continue to be a supportive therapy for another couple of months at least.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Sandra, that's great to hear about Mike. Is he still tolerating it as well, too? How are YOU doing??

    Kim, it sounds like you need a break. Hopefully you'll be getting some good weather soon and can just enjoy soaking up the warmth of the sun and doing fun, summer things(enjoying those capris!) and not even THINK about what's ahead at the end of the season. It does all start to add up though, doesn't it? The expenses, the wear and tear (emotional and physical) the amount of time spent with MDs, all of it. 4Minor was smart to take a time out - and I'm sure we all look forward to the day when it's possible not to plan our days around it.

    It's hard to gear myself up again for next week - the cleaning especially. I'm sure you can all relate to that! The fridge and pantry are still pretty well stocked since I haven't been eating much. I put a lot of stuff into the freezer and will take it out as needed, even veggies and fruits. But I am ready for this to go forward. I don't even care anymore about the tumor - I just want to know what's going on (or not) with my nodes so I can quit worrying/wondering about that.

    I'm also in the midst of an appeal regarding my radiation treatment - too long to go into but at this point my insurer is failing to impress, on several counts.

    I'm off to bed. Pre-op appt. is tomorrow, which will make it all too real.

    Best to everyone. Get some rest, all of you, and some fresh air tomorrow if you can. Thanks for hanging in here with me. I happen to think this is a very special group of women.

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  • Akitagirl
    Akitagirl Member Posts: 142
    edited May 2015

    Hi Everyone,

    Just checking in to say my exchange surgery went great! I am a little disappointed with how smaller they look compared to the TEs. However, I do understand that they need to 'drop and fluff'. I just hope the fluff more than drop. :-) The great news is that they are sooooo much more comfortable, softer, more 'squishy' and best of all, the pressure against my chest is gone. Interestingly, my lymphedema seems to have improved these past couple of days. Wouldn't that be fantastic if it stays that way and I only have to wear sleeves/gloves for exercise or other physical activity? All in all, that surgery was on Tuesday and I had my Herceptin #7 infusion today....hair is growing back nicely and I am in a state of peace.

    As for long-term therapy, I have decided on Tamoxifen for at least a year. After that, we will check my hormone levels. If I am still pre-menopausal, then I will do a hysterectomy. If my ovaries are already 'dead', then I will move to AIs.

    I am so thankful that much of this journey is now behind me and I am looking forward to moving on with life, without being consumed with BC. I thank all of you for your support, love, encouragement, humor and candor. I will continue to check in now and then and want you all to know that I am praying for you and enjoy reading up on everyone's progress.

    Love Always,

    Robyn

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    Glad to hear Robyn! My exchange and reduction on good side is scheduled for May 13th. Little nervous about the good side. Did you have to go for any special tests scans or anything prior to the surgery? Any tips? Scared! Decided to wait and do ovaries at a separate surgery.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    Thanks for the update, Robyn. I'm especially glad to hear that your LE has been better since the exchange.

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited May 2015

    Most people are not prepared for the smaller size they end up with after exchange. In my experience (and most others I've read) implants look significantly smaller than the same cc-size TE. I've had the unique opportunity of having one TE and one implant at the same time, so it was really easy to compare. (If you recall, I had a BMX with direct to 800 cc implants but lost one at two weeks due to a hospital-acquired resistant staph infection that started destroying tissue within a couple of hours of the BMX.) So I had one nice implant side and one flat TE side. Over the next weeks, fills turned the TE side into a Dolly Parton look alike by the time it was about 600 cc's while the 800 cc implant side looked smaller and smaller in comparison. I actually had to put a poly-fill foob on top of the implant side to make it look even close to the same size as the TE. Although the plan was to fill to 800 cc's, I threw in the towel at 740. It felt like I was going to explode! The "shelf" on the top of the TE was big enough to set a full cup on. The poor "little" implant side was all dropped and fluffed at three and a half months old, but to my eye, looked about half the size of the TE.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015
    That must have been a pretty bizarre experience, Sandra. But what a great resource it makes you... ;)
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  • revup-65
    revup-65 Member Posts: 94
    edited May 2015

    Just got on after my last post. I had my port removed Friday so finally that is out. I went to the OD he said he was going to put me on Aromasin for up to 10 yrs. I am going to research this before I follow along after the chemo issue. I did have ultra sound under the arm of the side I had lymph nodes removed 20 yrs ago, that came out clean with spots they weren't concerned with, that's reassuring . I am sending out positive thoughts for all of you, hoping things smooth out. The next big issue for me is the diverticulitis that is still causing me issues. Hang in there all I will be checking in to see how your doing.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    Hi, Revelle - It's so good to hear from you, and especially that you've had the port removed and that your ultra sound was clear. I hope that you're starting to feel better, although I know the diverticulitis does NOT help. You have had such a long struggle to get back on your feet, haven't you.

    Let us know how the Aromasin works out for you. So far, I've had no issues with Femara and I hope you'll have the same easy experience.

    My surgery is scheduled for tomorrow afternoon. I'm going to finish up work and try to squeeze in one more yoga class this afternoon. I'm trying to stay busy enough that I won't panic!

    Take care, Revelle - talk with you soon, I hope.

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited May 2015

    Hopeful, I'll be in your pocket tomorrow. Everything will be fine.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    Thanks SO much, Sandra. I really appreciate you.

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  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited May 2015

    Prayers and healing hugs Hopeful! I had surgery to remove tumor and left adrenal gland. I am still in hospital...the tumor about 2 cm...waiting for pathology and confirmation that I have Cushings disease

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  • Sharpei
    Sharpei Member Posts: 37
    edited May 2015

    Hello to all my October Surgery Sisters,

    I had my switch out surgery on Perky today and Slumpy got reduced and lifted. I have two nice bosoms (size of a good hand full, "enough" as they say. probably what I had before pregnancy, nursing, weight gain) tightly ensconced in a black compression bra which stays on for six weeks during the day, three weeks, at least, during the night.

    My hospital gave me two bras. The other hospital in town only gives one! It doesn't look like anything Kohl's sells. Can you imagine having to go shopping and looking for a spare so you could wash the one you have been wearing non stop in warm weather? Never mind if finances are an issue. Life isn't fair, but...gee. Again, I am very grateful for excellent care, good people around me, resources. My family and friends have been so kind, too.

    Everything went very well. I feel so much better without that TE. My arms move easily. I have an arm pit again and no shelf to rest my chin on! I wasn't so comfortable with those anatomical gifts.

    My tissues will be sent away for testing. I did not have a mammogram on this side. It has only been ten months since the last set, the one which discovered my DCIS on the other side.

    I have no pain. Probably still under the effect of whatever I was given at the hospital. Will take my prescribed med tonight. It is unclear to me how I am to "stay on top of the pain" if I do not have any and received no information on what I was given when.

    It was a beautiful day here today and I am optimistic. I came home from the hospital mid day and slept a deep, deep sleep. Certainly last night was not very restful. We had to get up before five and I have been working like crazy for weeks getting everything in the home neat and tidy and user friendly for someone with T-Rex arms for the next six weeks. I love that imagery. Was that your offering, Sandra?

    My biggest concern has been the fogginess which has seemed to accompany my two previous sessions with anesthesia (fentanyl preferred, morphine absolutely not). I use very little other pain meds. I hope I can read a book or two or five.I have been happy to find a discussion board here regarding a brain that has focus issues and is quite not the brain we loved before all this began.

    Drama and side effects and corollary issues continue to be challenges for some of you. I do wish you well, all of my sisters.

    This day has gone well. I am relieved and grateful and very hopeful. Compassion and hope and gratitude to you, my October Surgery Sisters!

    Love, Sharpei


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  • Fourminor
    Fourminor Member Posts: 354
    edited May 2015

    Hi Sharpei! Good to read your joyous voice!

    Hopeful, good vibes to you as you finally get beyond the looming surgery! May it be easier to have it behind you!

    At 6 month f/u my BS said I can go ahead with the Arimidex. I dropped off the script two days ago but have since caught a horrible cold and haven't gotten by to pick it up. I guess with it being this long a few more days is irrelevant. It looks like rain today and I'd really like to stay home, but I have Tai Chi class later and no sick days left thanks to breast cancer so i'm going to haul my congested butt of the couch in one minute.


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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited May 2015

    Julia, thinking of you today!!  Let us know how you are when you can.

    Four, I am also battling a horrible cold.  I need to crawl back in bed, but here I am at work.

    Sharpei, always good to hear from you.  I'm glad you are done with that TE (I can't wait to be done with mine, but I have at least 3 more months).

    Revelle, it's good to hear from you too.

    Take care everyone!

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  • Akitagirl
    Akitagirl Member Posts: 142
    edited May 2015

    Julia - I am sending prayers of peace and healing your way! This has been such a long journey for you leading up to this point....I believe you will soar right through it!

    I finally had my exchange surgery last Tuesday and am THRILLED with the results! Yes, they appear much smaller than the TEs, but also much more natural and not putting so much pressure against my chest wall. I am wearing a very comfortable cotton shaped bra from Bali - highly recommend it. Also snuck into Victoria's Secret and they measured me at a 32DD - no WAY do I look that big. However, the few bras I tried on look really good and I can't wait to wear them in 6 weeks. The best news of all is that my LE has actually improved since the surgery!!!! I have been going to a LE certified massage therapist, which has helped a lot, and cannot wait to see her again on Friday to show her what a difference it is without the pressure from the TEs. If anyone is wondering, I have the Allergan Natrelle 500 cc implants. Love them, Love them, Love them. I am a happy camper!!!

    Also - Happy Mother's Day to all the mom's out there. I know I am especially thankful to be celebrating life with my girls. Of course, it is supposed to snow (just like last year), but I will not let that take my joy. :-)

    All my best,

    Akitagirl

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  • sandra4611
    sandra4611 Member Posts: 2,913
    edited May 2015

    I've posted this before, but it's worth another view. It illustrates what drop & fluff actually is.

    image


     

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015
    Just a quick note to say 'hi' and let you know I made it through, although it was a VERY long day. The frozen section on the nodes (4) was good, so no ALND at this point. More later on a real keyboard. Four, Kim and LiLi, hope you will all feel better quickly. Sending cyber chicken soup your way! Julia
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