SEPTEMBER 2015 Surgery Sisters

Catherine, call your PS. Don't wait until next week.

Catherine, when you say "the most excruciating pain I have ever felt...." I say call the doctor today. This morning! Pain certainly is part of the healing process, but you shouldn't have to put up with something that sounds nearly unbearable. They should have some idea if this happens to a certain percentage of patients, if it needs to be checked out, and how long it's likely to last. And maybe they can change up your meds or give you some suggestions or maybe a referral to acupuncture or something else that could help, especially if it's indeed nerve pain.

I will say that the pain I've been having comes and goes. But you shouldn't have to suffer this way. Good luck!

Catherine, I am thrilled that you will not need chemo or radiation!! But, I agree with others, please call the doc about the pain. Does it feel like it's infected?

I'm ten days post LX and ALND. The incisions are healing well but my arm is very sore, as is my underarm. My breast is swollen but not as painful as it was. I got my drain out yesterday, pathology, etc. Clean margins, and chemo reduced tumor volume by 92% in breast. I initially had at least ten positive nodes, and only one of 21 taken were positive. Radiation process starts next week. Whew.

Here's a question, though. The path report describes several areas of DCIS that were removed along with the original tumor site. How do we know that there is not DCIS in other areas of the breast? When I asked the PA this question, she stammered a little and said - that's why you get mammograms. Uh - yeah....

Barb

Catherine - 2 days before I had my drains out I felt the most excruciating pain as well. This was at home though. After I spoke to the doctor, he said this was normal and about the right timing to experience nerve pain (I was 12 days in at that time). It sounds like it might be your case as well. I'm 23 days out and nerve pain is my biggest complaint. That and crying everyday. So I hear and feel you! The nerve pain has been traveling. Sometimes it's in my chest, sometimes it's below my armpit and even travels towards my back. I just returned from my first expansion. What a system! I did ask my PS if expanding will worsen the nerve pain and he said no. I had it done about 2 hours ago and I would agree. It's a crazy, different feeling. More tight and foreign feeling.

Yesterday was the first day I did not cry ... today I did. It's all just so overwhelming and as strong as I thought I was, it's okay to not feel strong right now. That's what we have our support for. I am learning that everyday. My PS said I am right where I should be and everything that I am experiencing is right on par. It's a blip in time in the grand scheme of things, but it sure doesn't feel like it when we are knee deep in it. If you're not ready for expansion, then just wait until you feel like you are. Be kind to yourself. You are strong.

I felt slightly better this morning. But now here it is evening time & that sharp nasty pain is returning. Maybe I am just overdoing it during the day? I don't feel feverish & by looking at it, it's not red or hot so I don't think infection is a possibility. I am supposed to start expansion Monday. So if I'm not ready by then than I guess I wait...

abc 123; you & I sound identical. Same issues, same crying everyday, etc... It is all so overwhelming

Catherine - we do sound like we are having very much the same experience. I, too, feel good in the morning. I'm a couple of weeks in front of you, so I would even say that mornings are great. I take a shower every morning, get the kids off to school, clean up the kitchen and this past week I've even had a little motivation for some movement. I googled "yoga after mastectomy" and did this video. Anyway, afterwards I'm tired and it's time for nap. And then the kids come home! It's no wonder evenings are tough. I dread going to bed because I know it's going to be a long night. I long for the days of laying flat! I'm grateful for a husband who can wear multiple hats, kids who are helpful and a community of caring people who are feeding us! It is going to be 70 and sunny today in Minnesota, so I'm looking forward to getting outside a little and going for a walk. I hope your morning is going well so far.

abc, I think evenings are always harder no matter what the situation. It's a long day of using your body, even in small ways. Remember tiny babies and evening colic? Evening is when you get a fever if you have a cold. It's when small children fall apart and have to be put to bed. So it's not surprising. Thanks for the link to the video--will try and watch it later.

Anyway, just adding to the chorus: I'm 2 1/2 weeks out and find my need for painkiller is least in the morning. I even swept the kitchen floor this morning--ok, not especially thoroughly, and it hurt, but I did it. By mid afternoon, I'm feeling whiny and cranky, and I'm quicker to reach for the Tylenol. I actually tried an aspirin yesterday and found it worked surprisingly well.

Garnergirls, glad you made the right choice. Hope the last drain comes out soon. Though take warning from my experience: I still think the BS was optimistic on my one drain, which was about 40-45 ml/day when he removed it. A week or so later, I'm on oral antibiotics, and it's still draining into a surgical dressing. Honestly, I would rather have had the drain for an extra week!

Pennsygal, glad for the clean margins!

Catherine, hope things are going better for you today.

Beautiful fall day here in NYC. Going out to the greenmarket; there's a fish vendor, and I'm thinking about mussels for dinner.

Random question: 16-year-old DS has been talking with a fake British accent for a few weeks now. How long do you think this lasts?

Elevenses definitely are in order! I think Monty Python was the trigger factor. And it's my own fault for bringing him last year to hear a reading by John Cleese. But then other things have kept it going.

I don't know: it's both amusing and terribly annoying. Like other aspects of having a teen around the house. Wouldn't trade it, however. And yes, they are crazy. Do I remember that you also have one/some of those?

That's funny about the hillbilly accent! Did he know he was doing it? And I take it you don't live, er, back in the hills?

Oh yeah, Harry Potter. That went on in our house for years!

Is anyone thirsty? This seems to be such a random question, but I have been so thirsty since my surgery PDMX on 9/16. 24 days in and I am drinking more than usual. I'm not taking any meds anymore with the exception of Ibuprofen. I've had conversations w/my PS about this, a nurse oncologist who happens to be a friend and two physicians assistant friends. All are not concerned, but I'm just curious if anyone else has had this experience? Perhaps it's part of the healing process? I would say that I am not AS thirsty as I was a week ago, but prior to surgery I would say that I had trouble getting my daily amount in. Now is not the case at all and then some ... strange.

I'm not super-thirsty, abc, but I was drinking a lot right after surgery (I'm 2 1/2 weeks out). I remember that for the first 2-3 days, my mouth felt swampy and my breath felt awful. Maybe something to do with the drugs?

Annoying random symptom: the backs of my upper arms are very sore, especially on the side where they couldn't find the sentinel node and so took "a chunk of stuff that we thought contained a group of nodes," said the surgery resident. Turned out to be about 5 nodes. So obviously they were poking around in there for a while. Anyway, it feels like a bad sunburn on the back of my arms. Sigh.

So I have to start taking tamoxifen tomorrow, and I am TERRIFIED!!

Good morning!

Hope everyone is feeling well this Monday morning!

Tomorrow will be 5 weeks post surgery for me. My TE's are very uncomfortable! I'm still sleeping either in my recliner or on the bed propped up as I feel the tightness /pressure too much if I lay flat. And I can't even think about side sleeping with these dang things in!

My underarm pain has finally gone away! Yay!

I go back for yet another fill this Wednesday. I'm afraid to ask my PS how much longer I will be doing the fills before the surgery to replace the TE's with the implants. I just don't want to hear his answer if we are still talking many weeks or even months. I'm so ready to be done with this!

I was wondering this morning, do you think we will ever not notice our breasts again? I mean, right now I am very uncomfortable. Will there ever be a time when there is no feeling, uncomfortable or otherwise, in our breasts, where they are just there and we don't give any thought to them at all? I guess I'm wondering if the implants are going to feel as unnatural as these TE's, and it will always feel like we have these foreign objects in our chest.

Honestly, sometimes I think that maybe I should not have opted for reconstruction, but then I'm not sure I could have done that either. I think I'd be a mental mess if I hadn't opted for reconstruction. That's just me, of course. I know it's not for everyone. I'm just so uncomfortable that I think it would have been much easier, and I would be recovered by now if I hadn't opted for reconstruction.

Lharry, I have the same thoughts. And since I did mine preventatively, I do have questions. I know I made the right decision to have the surgery, and I don't know what situation I would have been in prior to make me not reconstruct, but that does not discount the discomfort. I am coming up on 4 weeks on Wednesday and I have the burning on the chest wall and under my arms. I tried laying flat last night and felt like I was suffocating. I even tried on my stomach. Bad idea!

I was wondering if anyone feels disoriented? I'm not dizzy, but I don't feel completely with the program. I have been off drugs for quite a while now. Granted, my sleep is not quality, but I feel fuzzy. I can drive short distances but I don't feel confident going more than a few miles. Is anyone experiencing this? I feel like I'm too far out from surgery to blame it on anesthesia. I have a call into my BS.

I think it takes a while--much longer than these few weeks after surgery. Because it's not like we're having surgery in a vacuum; most of us are doing chemo (before, after, or both), rads, recon.... So it's months and months of treatments, and in the process we're having to remake ourselves and our view of our bodies, right? And against that psychological backdrop, it just plain hurts! I am a side sleeper and deliriously happy about being able to do that now, but the trouble is that I'm still draining from one side, where I'm convinced the BS pulled the drain too early, and I'm still on antibiotics for the infection there. The drainage is worse when I roll over onto that side. If it's not dried up by Wednesday (last day of the antibiotics), I'm going to call the BS and see what's what.

We all have different issues--but everyone has something! LHarry: I love your "I'm just ready to be my old self again." I just wonder if we can't go back, and have to fight our way to some sort of new self....