May 2016 Surgeries

Thanks, everyone, for the support.

I'm going to put a call in to my PS's office tomorrow. I think the biggest problem I had last week is that they weren't really listening to me. My PS and his resident (intern, whatever) just completely discounted my feelings about not wanting to do a sub-pectoral implant and offered no advice at all on things I could do to prepare to give me a better shot at a successful pre-pectoral implant. And then the PS said that if, by chance, the implant didn't work this time then he would go with a latissimus dorsi flap, and that kind of pisses me off too. He knows I'm an avid golfer, so why he would even suggest a surgery that could potentially prevent me from playing kind of floored me. In the meantime, though, I've spent some time scouring the breastcancer.org forums and there are several women on the lat flap forum who say they have regained all the strength in their lats and can still play golf, swim, etc. so maybe I'm making mountains out of mole hills – and especially since I need to get through the next implant retry first!

Besides all of you, I have other friends who really didn't have a problem with sub-pec implants either. It's just that at 750 ccs that's a LOT of stretching of the muscle that has to happen so that concerns me! I have a friend in VA who just had sub-pec done and started with 600 cc expanders and she said that while it was tough at first, she's back to normal and can even do chest presses at the gym already.

I'll post after I get the chance to talk to the PS again and express my concerns. Not sure I'm going to keep the 9/27 surgery date – may move it to 10/7. Obviously they would prefer that I have someone with me for 24 hours after surgery and we don't have any family in the area so if I have surgery on a weekday then I'd be on my own the next day. So if I move it to Friday then at least my husband and sons will be here over the weekend. It also depends on what kind of answers I get from the PS. Plus I'm going to look into a few other prep options that someone on another board provide me with. Lots of research to do!

Grandma, that pic is awesome. So glad you're having a relaxing vacation.

Val, are you out there? Wondering how you're doing??

Hi, Val! Are you feeling better? How is recovery from the stroke going?

If you're considering reconstruction then maybe you shouldn't follow my posts! LOL! Just kidding, but keep in mind that those of us still here are really the exceptions and not the rules. The majority of people don't have the complications that some of us have had and tend to leave these boards behind so you don't hear the good stuff!

Oh Valstim, I REALLY didn't want any company on the numb left arm/hand parade here. I am so sorry you've joined me. Glad you're getting therapy. What're the odds it's the same limb on both of us? I guess pretty good, we each only have two arms. Nevermind. I wasn't a stats major.

Speaking of, we've been in semi-crisis management mode since last week. My on-the-ball therapist has been fielding multiple updates & reports a day while I note symptoms & pain & track whatever I notice that changes it. Two weeks of watching my progress rapidly unravel, and stripping away exercises, and calling in consult, and I am so discouraged & frustrated. *Finally* today we may have put enough pieces of the puzzle together to have a guess at what might be causing the deterioration. Won't know until we try to fix it and see if it works, I guess. All I can say is thank the good lord I had the foreboding sense to start taking detailed notes 10 months ago, and I've kept at it (42 pages & counting!), so I can pinpoint when things started to go south and what else was happening with treatment at the same time.

If the next thing doesn't work, I think the next-next thing would be x-rays of the area - I think they like to do MRIs but Hey! I can't have an MRI because I have metal-backed-ports-TEs that I can't have exchanged until this is healed! I'm stuck in a hellish Catch-22! *headdesk* *groan* *mutters profanities*

I'm having visions of having the TEs removed just so I can get everything related to the damaged nerves addressed. *ugh* The "gift that keeps on giving" - you said it.

Exchange surgery date has been set for the end of October! Keeping my expectations lower with the potential of waking up with a new TE instead of an implant, but still excited to have the day circled on my calendar.

Went to my first group exercise class yesterday since my surgeries. Making progress! One step closer to feeling like my old self.....plus I'm motivated to tighten up this flabby body before the surgery. I started walking and swimming last month once I FINALLY got rid of the drains, but now it's time to get serious!

Hope everyone's doing well!

Congrats, myToyStory2, on getting your exchange date. Fingers crossed that you end up with two implants and not another TE! I simply can not WAIT to get to the exchange point! Except......

That I'm going to have to because I'm still dealing with getting the right TE replaced. I did hear back from my PS late last night; he called to say how bad he felt that I had left his office feeling so anxious about everything. He said he's not really "pessimistic" about the outcome - it's just that in every case where he's encountered problems it's always on a radiated breast, so he's just dealing with the reality of his experience. He did agree to prescribe Singulair and I'm going in to see him to discuss fat grafting. Plus I have an appointment Monday night at a holistic center to discuss high dose IV vitamin C. I had moved the surgery to October 7th but that may need to be pushed back again depending on how quickly we can set up the IV infusions - there is some bloodwork that has to happen first to determine that I'm not deficient in a particular enzyme and will be able to tolerate the IV. The longer we wait, the better anyhow - gives things a chance to continue healing and softening. We also discussed HBOT which he would be OK with but he's not sure my insurance company will pay for it and it's a very time-consuming and expensive process if they won't. So I'm debating whether I want to walk down that road with insurance.

At least now I feel like I'm being proactive and am doing everything I can to try to ensure a successful outcome the second time around. I have been so focused on the PS's pessimistic view that it was consuming me and affecting my day-to-day life. Now I can focus on the intention of doing everything I can for a positive result!

*sigh* This reconstruction business is not for the feint of heart, that's for damn sure.

GreyKat - Sorry you're having a pain-filled day!!! I hope your team of professionals is getting a plan in place to help slow down/stop the changes causing deterioration. Catch-22 is right! Would you ever consider taking the TE's out?

Raven - What's the scoop with Vitamin C infusions? How much, how often, and what will it do? Curious to hear about the process. Glad you had a follow-up conversation with your PS and you could get closer to being on the same page.

Sorry I've been out of touch for a while ladies. My uncle who was diagnosed with stomach cancer last summer just passed away. It was his cancer diagnosis that sent me down this path of genetic testing and ultimate PBMX. It has been an emotionally difficult time. His cancer led me to make decisions that have likely saved my life. I'm so sad at his loss. Cancer really SUCKS!

Mytoy and Raven, congrats on making progress and getting dates set or sort of set for exchange. I'm 3 weeks post exchange now, still have drains but am otherwise feeling great. The anatomical, submuscle silicone implants I have feel and look fantastic. I'm pleased with my new breast profile and am getting some sensation creeping back. So hang in there I'm so excited for you both to be nearing this next step.

Raven, I hope you awake with your implants rather than a new te. I'll keep my fingers crossed for you.

GreyKat. I'm at a loss for words for you. I can't believe how tough this has all been for you. Just one dam# complication after another. I really hope you get a positive break soon. Your stamina and strength to persevere are phenominal. I hope you find a good solution to aid your recovery soon and I hope your pain subsides asap!

Valistim, I hope your recovery is continuing well! This added burden is so frustrating and I'm sure taxing to your already stressed body. Hang in there and keep us posted.

Re: Surgical Drains - You and me both, Raven!! We'll be the ones to have them for 7-10 WEEKS after the surgery instead of the typical 7-10 days.

HI Greykat, sending gentle hugs your way. So sorry you have to go through all of this.

Do tell Raven4mi about Vitamin C infusions? What are they and what are they supposed to do?

GreyKat - we aren't going anywhere and will be here until you don't need our support any more. Sending hugs. I hope tomorrow is a better day.

Val - I hope you are doing well.

LRGO - I'm very sorry about your uncle.

I asked my PS about drains for the exchange surgery and she said usually not, but she would not make any promises. I don't know how they make that decision - maybe they put drains in if they have to do a lot of pocket work?

I had my second appointment with my MO last week. I really don't like the guy, but got a lot of push- back about switching to a woman ONC. For now I'll stick with him, since I'll only see him twice a year and he is supposed to be very good - just a lousy bedside manner.

Have a great weekend everyone!

And we appreciate the support you give us, GreyKat!!

Fills are completed!! Received hugs from the nurses - we've been together for so many weekly appts that it's a little sad to realize we won't have that regular contact any longer.

My mother received her genetics test results - BRCA 1 positive. (Just like her sister. And likely their deceased mother.) They've also tested high for colon cancer, and as you may recall my aunt is currently being treated for cancer in the Fallopian tubes. Mom is getting her oophorectomy surgery in the next couple of weeks. I'm getting an overdue Pap smear next week - suddenly feels more urgent to get that done. It has been quite a wild 2016 for our family. (Still not sure how I ended up negative for the BRCA gene....)

Thinking of all of you! Praying everyone has successful appointments and good healing this week!

Raven - You have a new picture! I'll be in surgery the day after you - Oct 26th. Congrats on getting a date back on the calendar for your new TE! I can't tell you how much happier I am with a "somewhat" matching set rather than the unmatched pair...and I'm excited that you'll get to feel that way, too!

myToyStory2 and Grandma3x - we're surgery sisters again (sadly! Wish we were well beyond this point!) I was looking for an October thread to post there but couldn't find one. Has anyone started one? Of course, I'll still post here too - don't think I could make it through this without all of you! On an upside, while looking for an October thread I found a get-together thread where some people from the boards on this site are meeting not too far from where I live, so I think I may go. Don't know those people, but it's still kind of exciting. I've met some really great people from other discussion forums and we've become very good friends and have visited each other across the country. It's kind of cool how these things can bring people together and make it seem like such a small and not-so-lonely world.

Grandma3x, nope, no more blue. I made my statement - which in a nutshell amounted to a big F$#@ YOU to the universe - and I'm done with the crazy colors at least for now. Besides, my husband hated it. LOL! Here's a peek at my new color - I'm going with a "Phoenix rising out of the ashes" theme these days. Just call me Fawkes!

Love the hair Raven!

Good luck on your exchanges / TE replacement surgeries in October. I wish I could somehow skip the surgery and just have mine magically replaced, lol. This stupid loose suture tab that is cutting me feels like a papercut from the inside - every day.

I checked today and was happy to note that my drain scars are somewhat faded already (it's been 4.5 months) and my good incision scar is also fading already. I mean, the incision is super-obvious, but it's not as dark. The one that's being repeatedly scratched by the TE tab is, unfortunately, still bright red in that spot, and of course it's a bigger, uglier wide scar that covers a lot of skin and is connected to other scarring from the other complications and THAT isn't fading. *sigh*

But I'm glad to see the drain scars & associated taping scars (my skin tore!) fading to a less obvious state. It's a start...

Still have the staple scars. Stupid unnecessary ring around my chest...several of them scarred over as raised bumps, so I think they're never going away. I'm not familiar with raised scarring. All my childhood accidents and scratches scarred over flat.

My only update: I've moved from referral-seeking-purgatory to seeking-prior-approval-from-insurance-purgatory.