May 2016 Surgeries

My BS just emailed to let me know that everything was benign on my pathology report

Have I said how much I love this woman? For her to email me when I know she has surgery this morning and I'm scheduled to see her in a couple of hours speaks volumes.

@Momof6 Lynch Syndrome absolutely is associated with breast cancers. They've done extensive screening in my family tree because we meet criteria for two hereditary syndromes (one very rare) and Lynch is the third syndrome we're about to meet given the colon cancer developments of one family member. Because of this linkage, it changes all my screenings and risk levels every time something new develops in the family's health.

You find yourself a geneticist who takes that seriously. Cannot emphasize this enough. You've got to know.

And finally, my belated post-op with my PS today as I tip towards the 3 week mark. I was so happy to see him just to get the official word that I'm healing up well enough and to be able to go over all my complications with SOMEONE.

It's funny now because I regained all my cognitive and motor skills (accidental nerve damage hand aside) and they could rule out a stroke from surgery. I can't imagine how this would be if it hadn't been the drugs and had been a stroke instead. That was some scary, depressing stuff to deal with. I mean I'd lost the ability to read or walk on my own and was losing the ability to understand spoken language. PS: "Wow. Ok. So." The line of degeneration I was on continued with a few more cognitive/motor losses and then coma and death. And we're all intelligent people here who don't want to accidentally kill me.

So then we talked about the specifics of what drugs are left to try for pain management through the reconstruction process, and how we've clearly got to use little to none. So I'm in for a painful ride, and that's pretty much what I'd already figured out. Also, the exchange surgery in the future is going to be different. It might be until then before we know if any, or how much, of the original reconstructive work that he just did was ripped out by the violence of the first week and the manhandling I got in the ER.

His nurse wanted to do my first fill and he vetoed it because he wanted me to have one week where I didn't end up in the hospital. That was my instinct too, to wait another week for more healing before confronting the pain of fills. I'm also getting smaller-than-average fills since I'm so far outside the norm on the drug situation that we're doing this as an experiment now (which means recon will take a lot longer than I was initially told). As in, he thinks the first fill and the first round of painkillers for the muscle pain is fully capable of putting me back in the hospital with neurological and motor failure.

So lest this scare you, I clearly don't have a normal situation. If there is a normal for any of us. But at least I get a week to work on my stretches and mobility (and window-shop the MemDay sales!) without worrying about watching for reactions that will send me into immediate deadly decline.

I'm wondering when I'll feel quick and strong enough to drive again, since I haven't had to worry about the being-on-painkillers side of that. It's just that certain motions still really hurt, and I'm afraid I wouldn't be able to respond fast or well enough to avoid an accident right now.

Holy cow I've missed a bunch. Still have fam in town so it's taken up a lot of my time. Raven - OMG, I'm sending you a hug - I'm so sorry. I had a staph infection (MSSA) in my hip in college that I was treated for with surgery and IV abx that returned 28 years later. Had a PICC line and all that jazz for 8 weeks. I feel you - my hub travels every week (gone this past week too) and it was hard being without him and I had my mom here - can't imagine being in your spot. Hoping for calmer waters for your soon! Sounds like everyone has had their share of ick - family, emotions, medically, etc. I've had some of my own but just pissy stuff. As far as looking - I think my husband saw parts of me first. I had told him a few stories early on that I had heard to make sure he had turned his sensitivity level up - he acted non-chalant about it and that worked for me. I was more critical of the result but I had different expectations. I was crabby - it's hot here, no showering d/t drains and no deo - so I had that no so fresh feeling. I've looked and analyzed a lot - I'm sure it's different with everyone on this thread since we are coming at this from all sides, prophy, pre treatment, post treatment etc. For me, this represents the beginning of my treatment and I went straight to implants trying to keep my surgeries to a minimum. I'm not displeased with my foobs at this stage but they are just bumps, totally numb except for phantom nipple pains and I feel like I have more dermabond holding me together than actual skin. I'm down to one drain on each side and my cancer side one hurts when I strip it (barely ever had any output). Every day my lymph node site gets kinda tender and ice helps that. There are a lot of weird areas where I have sensation and where I have none. My port site/placement absolutely sucks and I'm super tight up into my neck. I see my whole team on Tues - I may have to deal with this sucker being where it is but I will need it for at least a year so I'd consider moving it if I can but I need to start chemo soon so there's that.

Oh - I have an order for PT (I saw somewhere up there was a convo about it). My order is for range of motion and lymphadema assessment and education. Hoping maybe it can help with this neck deal too. Oh - another little ditty, my tumor that got me in this mess was the same on my post op path report (1.2cm) but I had an area of DCIS that was 3cm - wondering why that was never picked up before? and I had atypical lobular hyperplasia in my "perfectly normal" side. I feel validated that I chose to have them both done for sure now since the np was pushing me towards a lumpectomy (the surgeon was open to what I wanted).

Anyways, I will try to stay more up to date and involved now that I'm drug free and my mom has found some stuff to keep her occupied. It has helped having her here but I kinda got back to my routine (except showering-ugh) on about day 5. She came to be my helper but shes 5 weeks post total knee replacement and limps. I ended up driving a few times because honestly I trusted my self more than her (she's been released to drive but....). Sorry this was so long, had an extra cup of coffee this am:) Hugs to you all and welcome to our new friends:)

Oh Raven, I'm sorry about the infection and extra surgery. But at least you don't need an IV. There are medical supply stores that carry the prosthetics. The doc gives you a script and insurance usually covers it (or a portion of it). They should also cover the bras as well.

I just got the call on my pathology. Just the LCIS, nothing invasive, clear margins. I'll get to read it in a couple of days. But I'm relieved.

Before I forget, I found a good solution to hiding drains in hot weather. I hooked them to a lanyard, then put on a stretchy camisole (pulled it up from the bottom instead of over my head) and pulled it over the drains/lanyard. I then pulled on the lanyard from the top so that the drain bulbs were up closer to my chest. It was very comfortable and did not bother my incisions. I put a button-front shirt over the top and you would never know the drains were there. They weren't hanging on the lanyard either so there was no pressure on my neck.

Papillon, I've heard you can get phantom sensations. something about the nerves regenerating. My thing is that I have been checking for lumps so much over the past three months that I keep wanting to do that now. But there's nothing to check.

oh I hope the fills aren't as bad as you hope!

I had my whole nipples removed. So not sure why I would feel them.

Day 4 post op and I feel soo tired. No pain - just had paracetamol and mefenamic acid twice yesterday.

I also am not nearly as numb as expected and BS says I will get more feeling back. I think that's great, I expected two numb lumps for life

Momof6 – happy for you on the path report.

Papillon1 – I suspect it's a bit like the "phantom" pains that amputees feel. And I'm guessing that the vibration could still be nerve stimuli – the nerves in the entire breast were all disturbed.

Change of plans for me – the next time my PS could book an OR to remove the TE isn't until next week Wednesday but he doesn't want to wait that long – he feels it's more urgent to get it out ASAP in order to clear up this infection. But because it's a Holiday week-end the only way he can get an OR for me is to make me go through the ER again. So I just got the call a moment ago that I'm supposed to meet him in the emergency room at 10:00 a.m. – this TE is coming out today.

It's bad enough sitting here trying to wrap my head around the fact that I'll only have one breast for a while, but we were supposed to go camping this week-end with friends. So now I've ruined everyone else's holiday week-end on top of everything else – my kids are disappointed and our friends refused to go without us. I think they think they're being "supportive" but it's just making me feel massively guilty.

And speaking of only having one breast….how the heck do I dress for THAT in warm weather now? I won't be able to get a prosthetic right away because I'll have some healing to do first, but I can't lock myself in my house as a shut-in – life goes on – and with the weather heating up into the 80's loose cape-y or bulky sweaters are out of the question. Worrying about how to hide the drain in warm weather seems like silly child's play compared to this.

Four surgeries in six weeks. I'm effing over this.

Raven, is there a breast center or cancer center near you? You should call them. Many have free post mastectomy camisoles that they can give you with a soft plush insert. The breast center attached to my hospital gave me one while I was in the hospital. Also there is a woman's boutique by me that only caters to women going through breast cancer. They have everything in stock. Maybe there is something by you? But I would try the free resources first.

Hang in there. I'm so sorry you are going through this.

HI Everyone

Doing well after surgery on Tuesday . My BS arranged for a nurse to come every day for 10 days. Good thing. Yesterday, my drain had a clot and they had to strip it? Otherwise I would have to trek to BS office.

It really was not as bad as I had anticipated. BS said he got all he could see, and no new spots, of course pathology will tell the story, but I had been extremely concerned that I may had had some tumors in my chest wall. Not the case. He said looks like chemo did a really good job.

Gentle hugs to all.

Ispy and Grandma3x, thank you! I wrote down my questions and got them all answered by my doctor :-) Was told bruising is not abnormal, some people are more sensitive and therefore more prone to it than others, same goes for the tiny blister. Also got a referral for physical therapy so I will be starting physical therapy treatment next week.

Not sure how to get all my info to show at the bottom of my posts, until I do, I had a skin and nipple sparing mastectomy with immediate tissue expander placement. The tissue expander will not be filled until the bruising goes away.

Several surprises. I wore my wig during surgery. Was going to take it off, when they gave me the block but they said keep it on.

I could have stayed 2 more days, but was ready to come home on the 3rd day.

Raven I am so sorry to hear of the stupidity you're having to endure. Can I call it stupidity? Because that's what it feels like to me when things like this just don't go as expected and the results just seem way out of proportion. Like a simple infection that could be treated easily if it was any other bug meaning instant surgery. I am just wishing you an easier time and a safe recovery, part 4 (or is this recovery part 5?) Lots of hugs.

Had myself a good little cry last night. Just sank in yesterday that the drs accidentally half-killed me and I could have actually died, and I'm going to have to do the whole recon process and the next surgery with no-to-very-little painkillers, so now I'm really dreading all of it. It's rough going this mostly alone and alone most weekends with my partner always traveling for work. I need to start driving again so he can stop taking time off to take me to appointments and I can go visit a couple of my happy places (a pond, a park) - but it hurts all the time and I am so run down from the constant pain.

I also just found out my (former?) best friend came to my town on a fun trip two weeks before my double mastectomy and couldn't be bothered to call me or visit even when I was well and right before surgery. I find that a bold statement of how little she actually cares, and I'm really hurt.