May 2016 Surgeries

Tsoebbin - YAY! HAPPY DRAIN FREE DAY!

Thanks for all the updates, ladies! Sending support - whether your journey has been more straightforward, or you've experienced lots of twists and turns/ups and downs. And glad to hear your golf game is stellar, Raven!

Had an appointment today. The good news - another successful fill of 50cc's on my right side with no discomfort. The bad news - heading into Week 10 with the drain.....seriously.

Hello All

Moreshoes, 18/33 rads done. My skin is now fire engine red, but with the creams no issues. He is watching closely for peeling and will give me something else for that. The tiredness has hit and the emotionality is ridiculous. So no I take a xanax before I go...I think the constant daily reminder I have CANCER, is what is probably finally getting to me.

Glad for those recovering and mytoystory2, you are a real tough one to have drains in that long. Sending virtual hugs Greykat.

GreyKat - hilarious!! Just the dose of humor I needed!!

Weekly appointment today. The good news - another fill of 50cc's on the right. Only filled to 150 so far (in a 650 TE), but so glad to keep making forward progress! The bad news - drain output still not down to the necessary level and the nurse couldn't take it out. Ugh. Looked like we were moving on to weeks 11 and 12 (no appt next week - going on vacation in a few days...can't wait!) but the PA came in and became my personal hero - she ordered it taken out. I'm free at last!!!

Hey there moreshoes, Grandma3x and all the rest. I feel like a walking zombie. Lord am I tired but I just keep on going. will be 23/25 regular rads and then 8 boosts. then done. Yay for me. My skin is hollering as they say here in North Carolina.

Valstim52, I didn't mean I was going anywhere! Still love checking in to see what's going on with everyone. Sorry the exhaustion has set in for both your and MoreShoes, too. Hang in there, honey! Sending tons of virtual hugs to both of you.

tsoebbin, yay for no more drains! Hope the compression works for you!

GreyKat, you SHOULD be that "pedantic, detail-obsessed patient" because clearly they aren't doing the due diligence! Have you had that talk yet?

dctexas, I'm glad to hear things are going so well for you. Congrats on no chemo! Sorry about your back troubles; hope the PT is helping.

myToyStory2, HALLELUJAH! It must be such a relief to finally be drain free after NINE weeks. Woohoo! I hope you're going someplace fun for vacation and you eat and drink tons of wonderfully decadent things to celebrate.

Moreshoes I can't either . It's been 8 months of treatment. That's the only thing keeping me focused. I couldnt take anymore treatment right now. I understand now why people say enough already.

MoreShoes, I simply put my inserts in a sandwich baggie and zipped it shut then stuffed it back in my bra and it worked out OK. It will "float" a little bit, so if you're truly trying to swim that might not work for you. I'm more of a "stand in the pool and sip on a cold beverage" kind of gal - I do more floating/drinking than actual swimming. Last week-end my DH and I stayed at a hotel with a hot tub in every room and I just did the same thing.

Edited to add: I should point out I'm not wearing a bathing suit either. In the pool I just wear one of my Genie bras under a rash shirt, and in the hot tub I just wore the bra, since it was just the two of us.

Perfect timing for your question, MoreShoes! I was just working on this very issue a few hours ago! I've had drains ever since my May surgery so I haven't been able to swim, but I got the "all clear" on Tuesday. Now we're heading out on vacation and I realized I don't own any non-surgical bras and I don't know what to do about a swim suit top (especially now that I'm lopsided). I bought swim forms to sew into a suit at JoAnn fabrics that seemed like an ok solution for the short term, but then I started reading another thread about swimming poofs and thought I'd give it a try. Went to Target today to grab a couple of bath poofs (and also found some Playtex bras that seem like they'll work....whew!). My visiting mother used her crafting skills and made the poof for me this afternoon. She sewed it into one of my old suits and it seems like a workable (and cheap!) solution...but I won't know until I try it out. She is a 2-time BC survivor with no reconstruction, so she's looking forward to going home and trying the poofs in her swimsuits, too. Good luck!

My skin is raw, flaking and burning. Only 4 boost left.

Thank you very much for the tips. I haven't seen the rash guard tops in the Netherlands. They look great, I'll check where I can find them. The swim forms over here are expensive and I wouldn't like to spend so much now since there's still seroma and the wounds don't have their final form.

Val, August 5th is my last rad. I plan to celebrate with champagne. The skin is still okay but the RT said that it won't be next week.

Val, we've done it!!!!! I was expecting to see a message from you. It's going to be a horrible month from what the RT said but we're done with the treatments.

Hey Moreshoes. Hooray we are finished. My skin is raw and peeling but they say it will get better. The silverdine cream, my girls rad cream and miaderm are all keeping it in check, but it's UGLY. Cheers to you and all other finishing up treatment.

Grandma 3x in your pocket. Yes I shake about having any type of scan, pain or symptom, I hope this feeling gets better so we can go a day without thinking about this BC.

Just a note that everything is not related to bc. While on Taxol, I had spotting, they immediately sent me to my ob/gyn who did a pelvic ultrasound and I have displaysia. Lord, I thought it was another cancer. She said sometimes, no matter what the MO says that all the treatments throw our female parts off track.

Gentle gentle hugs and waves to you and all others.

Again Yay Moreshoes. My IBC and TN sister.....

Grandma - I hear you on the "it's always something more" front. I went in for an ultrasound to look at one thing, they decided to peek at another spot while they had me all gooey, and oh, well, surprise, I have a malformed internal organ, and so now I have to have MORE organs checked out along with all their "associated structures" in part to make sure I EVEN HAVE ALL OF THEM. Because I needed something else to worry about.

That's so ridiculous I can't even process it at the moment. I'm missing two breasts and they disabled my arm/hand and gave me an infection with a crazy-high return rate that I've got to watch for the literal rest of my life - and now we have to go hunting for internal body parts. No thanks. I'm too busy. And really, right now, I don't want to know. I'm not interested in more tests or procedures or surgeries. Apparently I was born this way and I've made it this far so let's just leave it alone. If there's an organ or structure I don't have, it hasn't slowed me down yet (that I know of) so let's not go looking for trouble.

In other news, with tests, they changed the diagnosis of the nerve damage from surgery. It's the ulnar AND medial and other nerves, two whole trunks of the brachial plexus. Along with difficulty moving, after all this time (3 months since surgery/injury) I've got muscle atrophy all along my arm and in my hand, despite lots of work at home and in OT. It is trying to heal, though, and it would be worse if I hadn't been trying to exercise it and maintain muscle mass. I can't do normal things (like put groceries away) without serious pain - part nerve and part because the muscle has atrophied.

So the damage is even worse than we originally thought, but the good news is that the latest dr. said in the next 15 months or so, with lots of therapy exercise and work, no re-injury in future surgeries, and some luck, if it keeps healing like it is trying to I could actually regain full functionality. No word on whether I'll have lasting pain or other symptoms of neuropathy (I have numbness, tingling, weird buzzing sensations, chills on that area only, random swelling of fingers/hand, and tons of pain). I am hoping to end up with a bit of luck and with some hard work (I have learned it is majorly hard work to try and move muscles that don't follow direction or have much strength) and maybe be fine in a couple years. Here's hoping I can get more OT approved by insurance, because I'm almost out of visits and now we've got more to work on.

Who knew I'd ever break out in a full sweat from the effort of just trying to move my fingers together?

So that's my bad news /good news on all this surgery-follow-up. I am choosing to focus on hope and full functionality. "Before a stubborn woman, anything is possible." That's a silly tv quote from a folksy tv dr, but it's how I feel about my hand/arm. I am too &@$^ stubborn to give up on it. Thank you all in the past few months who have sent good thoughts and prayers my way.

Moreshoes, Valstim - YAY for being done! I'm so glad you two both slogged through it and maybe now you can think of happier things, like planning a vacation when all this is over, or how you'd like to celebrate your next major holiday of choice.

I hope things turn an easier corner for all of us soon.

ToyStory - yes, I have a malformed organ. And possibly other congenital problems in the surrounding organs or "associated structures". I try not to think about it because I made the mistake of looking up a photo of the type of malformation and the whole internal organ thing - it's gross. Photos of cadaver and in situ organs are NOT my cup of tea. And because it's congenital, all the surrounding/related organs and their associated structures that came from the same batch of stem cells/early embryonic tissue need to be checked out to make sure they a) exist, b) aren't missing parts or have extra parts, and c) are shaped/function normally.

Like I said, I'm just going to avoid this as long as possible. I lived happily not knowing any of that and I just feel like it's borrowing trouble.

"Denial - party of one, your table is ready."

Here's to having a good weekend and blocking out all our troubles as much as possible!