October 2014 Surgery Sisters
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Hello Ladies, sorry I have been out of commission lately, not posting. I haven't even been on the computer. I have been working Mon-Friday 4 to 6 hours and still having pain from diverticulitis. Its been good for losing 18 pounds but would have rather done it differently. I am still trying to get a plan in place going forward. OD is so smart he may not be for me, I have an appointment Aprit 30 but if they get the pathology done on a smaller section of the biobsy I will go in sooner. He wants to do Her2 test on smaller portion because that sometimes is positive when the other part is not, or so he says. I am seeing the radiologist on Monday to see what he has to say, just a consotation. I will tell you I have been powering through this up to 3 weeks ago, now I don't trust anything including my own body. I know we all have had big challenges and seeing all of you get through it gives me reassurance but you cant help feeling angry and down with all this going on. Its always about the unknown that we face, you can prepare as best you can but still it is stressful. Its like being dropped into a war zone everyday and not know were your feet will land. Family and friends want to go forward as soon as you seem like your doing better but that isn't my reality, I am still worried. So I am taking a day at a time, hoping I get more secure with all this. This is the place I come to and stay at because you all are so honest and supportive, don't know how I would have gotten through the last 3 weeks without your support. I will post more, should be some interesting times coming up. I am thinking about all of you and hoping that at some point I can give back some of what has been given to me. Thank you for keeping me in your thoughts.
Revelle
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Happy Easter everyone! Happy Nice Sunny Day in Brooklyn! Waiting for my son to get up and find the 40 or so eggs I hid and hope I remember where they all are.
Saw the neighborhood cardinals yesterday. I have only once seen a hummingbird here. I don't think this is their territory. Mostly we get little brown sparrows and starlings.
Hang in there Revelle! Good to hear from you!
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Revelle, thanks for checking in. We've been concerned. (Which is NOT to guilt-trip you about keeping in touch or to create yet another burden for you to worry about.) I am shocked at how much weight you've lost and that you're still in pain as well as trying to get a decent treatment plan in place. I
Your analogy of being dropped in a war zone in unknown territory is a very apt, unfortunately. Here's an armload of support and encouragement; dip into it as often as needed.
I hope everyone had a good Easter despite everything.
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I think this surgery group may be eligible for an award as the longest running monthly surgery group on BCO with ongoing surgeries.
I think this really demonstrates that bc surgery definitely isn't a "one and done" experience. I've scheduled my surgery for 4/22. I've debated which way to go but for now am having a lumpectomy with sentinel node biopsy. If the frozen section is clear and the final pathology is good, that will be it for now. If the frozen section shows residual cancer I'll have lymph node dissection using the ARM protocol.
I'm as o.k. with this as I think you can be with a situation in which there are no good choices but I am somewhat nervous and am once again mourning all the coming changes to my body.
I know all of you have been through a lot more so feel a bit of a wimp but would appreciate your support during this.
I'm crossing my fingers for good weather for everyone for the weekend - enjoy!
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Hopeful 8201, How true on the continuing surgeries. I am barely one year pass diagnosis, and am facing another surgery Monday for the removal of internal scar tissue trapping a nerve. The pain is intense, unrelieved by anything, even narcs (which I am not taking since it doesn't help).
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Julia,
It's got to be such a HUGE relief to have a surgery date. I'm happy that lumpectomy is the perfect choice for you. None of this is easy or fun and I will personally jump for joy if all of your news from here on out is positive!
Your surgery is right around the corner, I'll be praying for you. Check in when you can so we know how you're doing. Of all of the threads I post on, this one is the only one I've marked as a favorite so I don't miss anything.
It sounds weird to say I'm happy for you, but I am. I am hoping for the best for you!
Take care,
Kim
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Mefromcc, holy cow, you poor thing! Is this next surgery a minor outpatient type? I'm so sorry. I've only had two surgeries and I'm OVER it and I know I'll have at least one more for exchange. If you're in that much pain, you're probably looking forward to some relief. I hope you get it soon
Take care!
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Mefromcc - Holy cow is right! That sounds miserable. Sort of like an internal pinched nerve. I'm sure you're counting down the hours until the anesthesia hits on Monday and you can escape that pain. I hope the procedure it TOTALLY successful and that you'll heal quickly and completely. Please keep us posted.
Kim, thank you so much for your prayers and support. I am relieved to have settled on a date, although I still find myself 2nd guessing it, even now. However, I'm not going to change it, no matter how much I wish I could just put this off another six months. And I do understand your comment about being happy for me - it sounds odd but it really isn't.
I will absolutely let you know how things go.
How are you doing, 3 weeks out from your reconstruction??
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Honestly, in some ways this recovery is worse than the BMX recovery. These expanders are weird and uncomfortable and I only have 110 ccs of saline with at least 3 more fills to go. It feels sort of like I have smalltennis balls in my chest and they are messing with my underarm tissue which is numb and itcy at the same time. I'm trying to be positive, especially since I go back to work on Monday. I'm not overly excited about that and I have no idea what to wear. I can't wear my prosthetics and I'm like training bra size. I know I should not care what anyone thinks, I just feel awkward.
Sigh...Enough griping. I know this too shall pass and overall I feel good. I'm just coming to the realization that these TEs are going to be uncomfortable.
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Kim, they do sound uncomfortable and inconvenient, too. To face going back to work PLUS the wardrobe issues does NOT make for a happy weekend, does it?
Is there enough healing that you could wear one of your pre-bc bras and pin some stuffing (athletic socks?) in the cups?
I will confess that I seriously considered first an mx, then (very seriously) a bmx - and I still have a feeling that may be in the cards in the future. How that will play out with post-lx radiation is anybody's guess. I've been reading some of the threads and wondering if I shouldn't go straight to bmx....
However, the whole reconstruction thing, and particularly the TEs sounds like a major, major headache and a much larger undertaking. I'm just not ready to commit that much time, effort and energy (emotional as well as physical) to that right now. I really admire those of you who did go down that path, whether you were ready to or now.
I'll keep your needs in mind and prayer this weekend - we can trade worries for a few days if you like!
I am glad you're feeling pretty good except from the ribs up! Don't overdo things next week.
Julia
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Yep, my surgery is outpatient. Hope my PS can find it and release it. An injection of lidocaine in the area numed the pain so at least we know the right spot. I just don't want to start all over healing, I was just getting my strength back after my last surgery on 2/12. Plus, I can't get my nipples surgery until 4 months after any foob surgery.
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How do you make a decision when none of the choices are good? People have no idea what we go through. I truly think it's like PTSD...a nightmare that seems to go on forever. I'm more than 3 months post-op from surgery #6, aka the FINAL one. This whole thing started with a diagnosis in July 2013 and I think if my husband hadn't gotten sick, I would have been in "breast cancer - when is it coming back?" stage. I got so used to focusing on my body and worrying about "what if's" that it was becoming a full time job. Now I don't think of it at all. Amazing! I don't even remember breast cancer because it's been replaced by the fact that my husband is dying a little each day. It puts it all in perspective.
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Oh, Sandra, my heart aches for you. You've been through SO much, I have to believe that something good will come your way. I'm praying for Mike and for you.
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Sandra, it does indeed put it all in perspective. And I know it is harder, infinitely more painful, to watch someone you love so much going through this than to do so oneself.
I read the account of Robin Roberts' struggle with MDS in her memoir around the time that you were starting to talk about Mike's illness. I was taken with the little bracelets that her friends had made, which are now sold as a fundraiser for MDS research. I ordered a set and wear one most of the time. It's a reminder of you and Mike, of all the sisters sharing this thread, and is also very centering. So you two are in my heart and prayers a LOT.
Still, it doesn't change what's happening to you - and I grieve for what you, Mike and all your family are going through, Sandra.
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Sandra, that's so very true. Thank you for sharing that.
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Mefromcc - How did your surgery go on Monday? I hope it was completely successful and that you're starting to feel a lot better.
Take care! -
Hopeful8201, my PS said he released scar tissue in the area that was pinching stuff off. As long as I was anesthetized, he did some evening of the foobs, taking tissue from under my armpits and "donating" them to the foob mounds. He also trimmed a dog ear over my hip. I'm back to no lifting, pushing, etc until he says I am healed enough, but didn't lose any of the recovery strength I had achieved in the previous 8 weeks since my DIEP. I have two drains again, but they are in tissue that are still numb from the other surgeries. I was"ordered" 😉 to shower starting 24 hours after this surgery. I think that makes anyone feel better. I have 4 more months to go until stage II. I am optimistic that this surprise surgery wasn't a set back, but rather a minor tweaking. So things are so far going good.
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So glad to hear that it went well - and that you got to shower the next day!! It's amazing what a difference that makes, isn't it? Did releasing that scar tissue do the trick in terms of eliminating that particular pain or is it too early to tell yet?
I'll bet you're pleasantly surprised to find your strength has held up. Take it easy so you can grow stronger every day. Thanks a lot for the update!
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Hi ladies,
Mefromac, glad to hear things went well.
I must admit that I too have started drifting back to "normal," in that I don't think much about the foob except when getting dressed or undressed. That's my daily dose of breast cancer. Although today I am going for my fourth Zoladex injection and we will talk about whether to finally start AI's. My period has not been seen since January (monthly right up to the last one), but my estrogen level has been holding a bit. I've taken to a nightly dose of magnesium, which not only seems to give me relief from hot flashes, but the first long stretch of solid sleep I've had in YEARS. I say this as a chronic insomniac.
I was not happy about being put into menopause, but four months in, I'm kind of OK with things, but REALLY not looking forward to AI. We'll see.
Anyway I like hearing how you all are doing and wish nothing but peace and happiness to you all!
4
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4 and Hopeful, thanks for the well wishes. The neuroma area is not hurting anymore. Hope that did the trick and the nerve doesn't grow back into troubled tissue again.
I had to have a stitch abscess taken care of today. Actually, I had two additional stitches that were getting soupy, so they were pulled too. Could not talk the PA into pulling the drains, since I have a record of forming seromas. My drainage was under 5ml the previous 24 hours, but no go until next Wednesday. She said that my PS specifically told her to keep my drains in until then before he left for his honeymoon in South Africa Wednesday. Drat. I was hoping to lose them.
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Sorry you couldn't ditch the drains! I'm sure that would have very welcome. I am glad to hear that the neuroma seems to have been resolved. Crossing my fingers that it stays quiet.
FM - It's great that life is drifting away from the focus on cancer. I hope that continues. I know that it never leaves our lives, but maybe at some point it doesn't dominate? (I hope.) I hope the AI works out well for you once you get started with it. If the first doesn't suit, try another - we all react differently.
I'm going to switch my magnesium to evening, too, and see if that helps my insomnia, which has been a problem for years but almost intractable the past few months. Thanks so much for mentioning that.
We're enjoying lovely weather (again, finally) and I hope both of you are, too. Enjoy the weekend!
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AARRRGGG!!!!!!!!!!!!!! Did I just write my FIRST post saying how I felt like i was starting to think beyond breast cancer?? Well, silly me, thinking life could move on. Today got a call from my MO who said that my hormones levels that were drawn yesterday after now three full cycles of Zoladex, still aren't truly postmenopausal. She said my FSH should be high, and its not, and that most women are there after two treatments. She suggested I might want to speak to an endocrinologist to see if they had any insight.
I asked the GYN oncologist in my group if she could recommend one and she asked me if I had considered having my ovaries removed.
Well no. Actually I really was hoping i was done with surgery forever, or at least a very long time. I don't care if it only takes 20 minutes, and I'll be back at work in two weeks, I don't want to lop anything else out or off of me. I WAS JUST JUST ALLOWING MYSELF NOT TO THINK ABOUT THIS CRAP!!!
Its a really bad time at work to even try to take more time too. I will start burning through vacation time. Vacation, wasn't I just saying I needed one? Yeah I was about to schedule a trip for June. AAAAAAAARRRRRGGGGGGGG!!!!!!!!!!!!
Well, I already have the next Zoledex injection from yesterday so I'm committed to 28 more days. I'm praying. Just yesterday I was groaning about starting the AI's wondering if I could sneak myself another week or two of just slightly lowered hormones. Now I'm willing. I'm willing to take them without complaining. I just need my body's hormonal axis to cooperate and not be one of the few outliers for whom Zoladex doesn't work at all.
Where else could I vent that but here???
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Four...well CRAP!!!
Ok, so playing devils advocate who cares what happens for "most" women. That is still an average, right? Maybe your body is just a little slower to respond. I say give it a little more time and talk to them but don't schedule the "lob off" yet.
I don't blame you. Remember, I'm the one who got overwhelmed in the genetic testing and bolted out of there before I could even complete the stupid BRCA test. Also, up to this point, nobody is monitoring ANY levels of anything in my body. At least they're watching you.
I'm sorry, that just sucks! BC sucks, surgery sucks and these hormone blockers suck too!
I sometimes think it would be easier to just have ovaries removed but at what point does that stop? What's next?
Thinking of you ((hugs))
And while I'm ranting may I just say that my TEs hate me?
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Fourminor I just got back on the computer for the first time since last weekend and read your post, boy do I AGREE. I am so tired of the emotional, physical and changes in my body, I want to yell for a time out. I have seen so many changes in my skin and other things after the chemo I wonder what next. I did get back the test MO wanted on smaller cancer next to the big one, it was HER-2 negative so now the port needs to be removed, I am like you another surgery. I met with the RO he said that the big worry for me was Mets so will have to watch closely even though I am clean now. Looking forward to the watching! We do understand each other here, although our experiences may be slightly different. I too am looking at AI but not sure I will go along with what they suggest, It is really difficult when you loose trust of your bodies health and loose trust in some of your docs. Don't want to be negative but sometimes that's how you feel. When I come here I know that its going to happen that some days I am ok, some I am not like all of you ladies , because we have all been here supporting each other over the months that helps even things out. Yes BC sucks!
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Hello Ladies,
I haven't been around much as I tried to forge ahead as we all approach at least one year mark! I last had found out I was BRCA2 positive. I planned to do the other matectomy and reconstruction when I had the exchange surgery,but first decided to have a complete hysterectomy and was scheduled for this Thursday until today. I got a call my liver numbers had climbed when done a month ago to about 3X the normal range. The anesthesiologists were not comfortable with this and cancelled surgery and scheduled me to see a liver specialist at 730 tomorrow night. The next appt was mid may. Now I am scared, frustrated, and crazy again. I have read reports Tamoxifen will raise liver numbers, but pray it is not cancer!
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Slavrich I am up late and saw your post. My liver numbers were high also after a bad raction to chemo. What they told me for what it is worth, I had 4 small spots on my liver, cysts but scared the hell out of me when the nurse in the hospital said I had mets. the story is too long to go into here but hang in there, it isn't always what it seems or what they say. I took a deep breath and told them I needed to know more, so don't be afraid make them give you the full picture. That takes more time then the snap shot, they don't like that. I know the fear but I resented the fact they put me through all that without getting everything straight themselves. Hang in there and make them give you the full picture. My thoughts are with you. -
Slavrich, hope everything goes okay for you. What kind of blood work are they doing on you? I just want to make sure that I am having the right kind of blood work done... do they test for tumor markers or anything like that?
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Slavich, I'm so sorry! Hopefully it's just a side effect from the tamoxifen!! I know it's easy to say, but try not to freak yourself out until you see your Doctor. Please let us know what they say - I'm especially interested since I'm on tamoxifen too and am worried about what might be going on in my own body. Like I mentioned somewhere earlier, I'm not being monitored AT All, which is a bit disarming.
Hopeful, just a quick shout out of support for you. Isn't your surgery tomorrow? I'll be thinking of you and praying for clear margins and clear nodes.
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Thanks, Kim, and yes, my surgery was supposed to be tomorrow. However, I came down with the flu Sunday night and we had to postpone. I am totally chagrined and frustrated.
Slavrich so sorry to hear about all the twists and turns in your life. sometimes this disease just seems to unleash a flood of health issues on women who were otherwise in peak health. I hope you get fast and reassuring info on what's going on with your liver.
Revelle, any updates on your situation?
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