Topic: March 2020 Surgery Group

Mar 28, 2020 11:25AM - edited Mar 28, 2020 11:26AM by OnlyGirlof5

Sage - I am also at UM. Who is your surgeon? My surgery was on Feb 27th. I am so frustrated with the clinic being shut down. I should have been 1/2 way through my 6 planned TE fills by now. I cried and cried when they called to cancel the first. I was so looking forward to that date on the calendar! I am adjusting now that I realize how bad the virus is spreading here in MI.

2girls1boy (and Sage) - the drains coming out is NO big deal. I, too have vasovagal syndrome, so I get the passing out issue. I will tell you this: I didn't even know when she pulled it out. I had worked myself up into a nervous wreck when I went in. I had to lay down and take big breaths because of the fear I would pass out. She assured me it would not hurt. And as she said that she was putting on the bandage. She had pulled it out and I didn't even feel it! lol

Also the hormones and emotions are NORMAL. I am now 4 weeks post-op and cry at everything. I am not a crier but this ordeal has made me into one. At first, it bugged me, but others remind me this is perfectly normal. Here is my not so experienced advice: go easy on yourself. Give yourself space and permission to feel all the emotions. It will help you heal emotionally. Physically? Rest, rest, rest. In fact, I plan to take a nice long nap this afternoon. I am a go-go-go person, so I am not used to inactivity. But my body tells me to rest, so I do.

Mar 28, 2020 06:46PM OnlyGirlof5 wrote:

Sage-my SO was Dr. Chang, and I also have Dr. Wilkins. Based on all the clinics now closed and merged at the hospital, I am guessing my next week's tentative fill will also be cancelled :( They were hopeful they would get back on track by the end of this next week, but probably not. His nurse told me on Wednesday they are very backlogged and really want to keep all of us on track. You are fortunate you were scheduled before they began all the surgery postponements! I sequestered myself and worked from home for 2 weeks before my surgery, so I am now going on week 7 of staying put. It's getting very old!

My husband watched the entire drain removal and said it was a smooth process. A snip of the stitch and Lauren pulled it right out. Like I said, I didn't feel anything. You can do this!

Yes, the drains suck. They sucked every single minute they were in. I wish I would have figured out earlier, but the last 3 days we started taping the tubing to my side. This made it so much more comfortable as the tubing wasn't getting bumped. My husband wrapped a small amount of gauze around the tubing and then place the tape over the gauze and then to my skin (about 4 in below the incision). That way, he he didn't have to pull the tape off the tubing when he milked it. Like I said, every bump was becoming uncomfortable.

Mar 30, 2020 03:53PM AngieB92 wrote:

Just came from PS office and I was able to have one drain removed! Yippee! The other drain is still putting out fluid like crazy. So I’m still on lockdown with movement. My fills are now being scheduled 3 weeks apart due to the pandemic. I’m okay with that considering you wouldn’t be able to schedule exchange surgery anyway

Apr 1, 2020 02:33PM 2girlz1boy wrote:

So I was ready to head to my appt Tuesday, 2 hours away when the dr called and asked about my output and decided to move it to Thurs. Man that was a disappointment! I washed my hair and did my nails for this, and it was the first time out of the house in over a week! LOL

I don't know about you guys but these expander thingys are freaking weird! My swelling has gone down so they are flat and wrinkly, weird feeling. I'm told they will fill out and be more comfortable. This was one of my fears of getting implants, the feeling of them in there and not part of me.

On the plus side I have more energy and able to get thru the day without napping twice a day. Sleeping well, actually quite comfortable propped up with my wedge pillow, I may keep that thing forever! (kidding , not kidding)

@AngieB92 that is good! I have my appt tomorrow ! Rescheduled from Tues, cause I wasn't down enough output.

Fingers crossed I am down to the level they want.

@sage I hope to get both done Thursday, I'm freaked about it! I don't know if I would let them do one, cause I prob won't get the other done! (kidding)

How was it pulling the drains, I have heard horror stories and I have heard it's nothing!

Apr 1, 2020 06:08PM AngieB92 wrote:

@2girlz1boy - my TEs felt better after each fill! I’ve had 150ccs total and it made them feel less.....foreign.

Apr 3, 2020 10:34AM 2girlz1boy wrote:

OMG you guys! the drain removal was soooo easy! I didn't sleep a wink the night before, totally been stressing over it!

Dr. said she was gonna pull them, and snipped the stitch holding them in and started ripping the tape off, omg that sucked! She said breathe in and we'll pull them out, and before I could breathe all the way out, she says there you go, drain free!

What!@#$& Yeah I didn't even feel a thing! The worst part was the tape!

Then she drained one of my fillers cause it was causing too much pressure, that felt soooo much better!

So today I am a free woman!!!!! I can shower and raise my hands over my head stretching, so I can wear my hoodies again!

Amazing how these little things make you feel so good!

The WORST part of my day???? THE RIDE!!!!! 2 hour ride bumping over rough roads, caused a ton of pain! It was so weird cause all the pain was in my chest muscles and ribs, cause my boobs are numb and no feeling!

My oncotype has not come back yet so the need for Chemo has not been determined yet. But they did say NO radiation!

Day --whatever-- of quarentine.... I'm going crazy, but in the long run it was a good time for me to be recovering when my business isn't open right now anyway!

Apr 5, 2020 04:16PM 2girlz1boy wrote:

How's everyone doing? We've made it to April! Still surreal these times of isolation.

I got a message that my oncotype results were in and I have an appointment with my oncologist Tuesday!

Fingers crossed it doesn't dictate that I will need chemo! They already said I don't need radiation thankfully.

I finally got out and drove my JEEP today with my pup! I've missed my girl so much! Our friends twins drive-by 3rd birthday parade was the perfect excuse to get her and take off the top! After all it was 50 degrees up here in Maine!

I'm personally feeling much better! My best times are in the morning! I get up feeling refreshed and energized, and by noon, I am done. Need a nap.

So discouraging I can't keep the pace all day, I know it will come back, just frustrating for me since I am on the going 110% all the time. I should be enjoying this down time! LOL

Apr 6, 2020 09:35PM AngieB92 wrote:

Thank you cyathea!! Sorry your path was a mixture of good and bad but women are continuing to thrive with your kind of report!! Keep rockin, sister!!

Apr 8, 2020 09:55PM cyathea wrote:

Maryjv, I’m praying you get a good report tomorrow. Although I don’t wish this nerve pain on anyone, it is a comfort that I am not the only one and that we’ll get through this together.

Apr 9, 2020 09:14PM Darlene63 wrote:

Yes sleep is elusive. I was diagnosed in Feb 2020; had the biopsy, lumpectomy and now hormonal therapy because the radiation is on hold due to the COVID 19. I have not slept since the first week in Feb. I take benadryl but it may or may not work.

Apr 10, 2020 09:18AM cyathea wrote:

Maryjv, that is wonderful news! I’m celebrating with you. Sorry that you and Darlene63 are dealing with hard knots.

Rather than knots, both my underarms feel hot, numb and that “pins and needles” feeling. It’s like I have sponges under my arms. I’m not sure if this is from swelling or that this is just what fat tissue feels like when it is numb.

Have you ever burned yourself with a curling iron and felt the burn all day long? That’s what my underarms, inner arms and back feels like.

The Gabapentin that they gave me for the nerve damage makes me drowsy. I think it is also making me feel a bit “down in the dumps”. I keep wondering if I will ever feel normal again. It’s been three weeks since surgery. Before surgery, I had thought that I would be feeling pretty good by now and getting back to my long work days.

I am still working on my laptop from home, but my stamina, mental clarity and focus are not what they used to be. This makes me sad. I love my work. Helping my clients is what gives my life purpose. Being behind in getting their projects completed is stressing me out

Apr 10, 2020 02:33PM Maryjv wrote:

oh ladies!! Surgery was two weeks ago and feel like the pain is getting worse!!! My chest feels very tight and then the hard knots (above both drain sites) are very large and painful 😣 wishing I could move and sleep on my sides but no!!! I feel your pain Darlene!! Also my right arm prob has cording or nerve damage because I can not straighten out completely within feeling a pain running down the entire arm!!! Very very painful, and I forgot to ask my doctor on my phone visit 🤦🏽♀️ Def don’t like the telehealth calls!! Not the same

Apr 17, 2020 12:05AM Lovetoberestored wrote:

Cyathea, It’s been 5 weeks since my lumpectomy and sentinel lymph node surgery. I finally feel better. I had 4 weeks of PT(1 to 2 times a week) and did the exercises and stretching even though it was very painful. With very careful stretching I could actually feel the scar tissues breaking off from whatever they were attached to, whether nerve or lymph vessels, who knows.. It took daily painful stretching to get here though. Without PT I would’ve not survived the pain. I have low tolerance to pain I am learning. Sigh..

I’m also finding that once 6pm hits my armpit and surrounding area gets swollen and uncomfortable. I end up massaging the lymph fluids away from the surgery sites which relieves it a bit. I was told the numbness will take a long time to go away, kinda like how after my 3 C-sections I still am numb around the incision.

I’ve started radiation this week and maybe it’s psychological but I am feeling a bit more tired. Everyone at the cancer center says I shouldn’t feel tired yet, lol. I guess the worse is coming later? I hope it won’t be too bad.

Living with the pain for the last 4-5 weeks was really difficult. I’m now thankful for the simple things like being able to chop and cook for the family, being able to shampoo and brush my hair, getting dressed, and most of all just being able to lay down and sleeping through the night without waking up from pain. Anyone who’s going through it right now.. it WILL get better! Hang in there everyone

May 3, 2020 03:06PM AngieB92 wrote:

cyathea - good to hear from you and glad you got some answers on your fever! I had my second Kadcyla Friday and made myself busy Friday night and Saturday to ward off the muscle and joint aches and it seems to be working!

My TEs are filled to where I want them to be. I didn't want to be as big as I was before (D cup) so what I have now is perfect. My exchange surgery is scheduled for July 2. I'm excited. I'm a side sleeper and cannot sleep like I used to with these TEs.

I hope everyone is doing well with having to go in to the clinic visits alone. When I was waiting on my Kadcyla a woman was talking to another woman and started crying. The isolation she was feeling due to the pandemic in addition to finding that the cancer was still there after her CT just broke her. I don't even know that she had breast cancer. Several of the people around her stepped up to offer her encouragement - I offered my secret stash of tissues with lotion - and we all talked it out. That was so profound to me. Bottom line is no one can understand what we go through except the rest of us. This is our way of taking care of each other.

So far, tamoxifen and Kadcyla have been kind to me. I hope it stays that way and I hope you all are doing well and at least able to relax and smile during these tough days

You mentioning prosthetics made me think of my grandmother. She had a single mastectomy and was fitted for prosthetic bras. They looked amazing!! Later in life, as dementia took more control over her, her prosthetic bra was her favorite place to hide her dentures!

May 10, 2020 02:41AM Cobra91 wrote:

Hi There,

What brand of silicon or scar gel are you using? I am shopping around for the most effective right now. Any suggestions