NOLA in September?
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Susan, thank you! I'm so glad I can be of any help. I have joined in on the June 2011 chemo and am still getting connected, but it's not like here. I'm accepting the chemo more and more and not feeling so pissed off about it. Today. lol I had almost no problem accepting a bilateral mastectomy, and I know that's what many others agonize about, but not chemo. It is so very true that the anticipation and waiting is much harder than reality. Each time proves it. Thanks for sharing your experience w/chemo.
Spring and Betsy, it sounds like rads would benefit me very little. My RO sounds like she'd be very happy if I didn't need it! Or if the decision is up to me and I don't do rads, that she'd think my decision is a good one. She just wants to be sure all her questions about my path are answered. She wrote out this whole page for me; what risks they look for (after BMX) and what of those risks I have. I have a very good feeling about my MO and RO, and I don't always get that. They love my questions and my info gathering (and they love that I'm getting it from bc.org!). And losing the flap would be the worst case scenario and very rare, but possible. If that happened, I still have hips to donate! Knowledge takes some of the fear out for me.
When I was at Costco today I noticed the Flexees tanks for $16. They had a basic variety.
I've been in my binder for the last 4 days. The drain seems like it was so long ago. It's kind of crazy being all compressed like that! But I'm wearing it. My 7yo is very intent on pulling down my shirt if she gets a glimpse of the binder. Because if she gets a glimpse of the binder she might see my scar! She's seen the glue and some scabbing, so she's a bit afraid of seeing it again. We might look at it more once all the junk is off. I've got some sutures that need trimming that I can't do. I'm either going to see if I can get them trimmed when I get my port or I'm going to call my local PS. My belly button grosses me out the most!
Bettye: great news!
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SurfaGrl- my insursnce is out of net wook but threy treated it like it was part of theirs if you feel right about this then start talking to them about it. My Coba runs out dec 23 at and i told them what i was up against.the can back as if the were my ppo and got everything going. Now i wish colleges would work they way. It was a little slow after the insurance was ok but i never got to talked to dr S I just checked every wed site to know I'm going to the best and i hope he can fix the butcher job that was done i will tell all of the southeast that he saved my life. So keep calling and take a lot of notes and if you won't top notch ask if they do case studies or pro bono . Also loofk at wed sites on micro look a the jobs they have posted bad ones don't make it up then look at Dr D and Dr.S Photos before and after I hope it all goes well
in
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Bettye-Good for you I'm so happy for you and your family!
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Hi Nordy and Snobird, Thank u for sharing your knowledge with me about insurance. I am from Hawaii and will be traveling a long way for consult by myself but I feel o.k. about it. NOLA did share that Blue Cross/Blue Shield is out of network and the cost of my end like Cider8 shared, would be about the cost of a car. My insurance is called HMSA that is affiliated with Blue Cross/Blue Shield. Listening to everyone, I feel confident that NOLA is a great place. I just need to find out total cost to make sure I can pay for the hospital, anesthesia, etc. I was supposed to do this reconstruction 2 years ago but got scared and cancelled. I am ready now!
Hi lesliet- I believe my consult is after your surgery in the late afternoon. Good luck! I will fly right back out the same day to watch my son play baseball in AZ.
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My apologies. My consult with Dr. S is on June 16, not the 15th. Aaarrgghh, got the dates mixed up. I looked at my flight and realized I had the wrong date.
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What do you cover at post op?
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BettyeE, YAY YAY YAY!! That is great girl! I read a bit about that X drug you are on, oral/pill chemo?? can't beat that, especially if it's working!!!
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Just wanted to pop in and yell out a big WOOHOO to Bettye!
I like good news!!! 0 -
Springtime or anyone who has gone through Stage 1 what is OT/PT on my Appointment list Katie sent me and what do they do on post op appt?
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Springtime- or anyone who has gone through Stage 1 what is OT/PT on my Appointment list Katie sent me and what do they do on post op appt?
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Leslie, I never had an OT or PT appt when in NOLA. Anybody else? Is this something new? (OT/PT I assume is Occupational Therapy / Physical Therapy)...
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The only thing I think it would be is the lymphedema stuff. But mine said lymphedema consult. Unless they are already adding some OT/PT stuff for getting back range of motion after surgery! I think that would be fantastic. When is the OT/PT app? It's only been 3 weeks since I was there and I had no OT/PT.
At post op the Dr takes a look at your flaps and incisions (since it's been a few days since rounds), takes out drains and writes Rx as needed, you get to ask more questions and the nurse sets you up with more supplies and instructions.
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And, you longtimers: I just got to the old posts where you let it be know Dr S nickname is Dr Delicious! And when Louann told him, he turned red! You all are crazy! (and on the mark!)
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Day 3 post-op here. Today was a rough day. Felt queasy and fatigued. Rested all morning and showered after lunch. Good news was that the breast drains came out and the Doppler wires cut back. I was discharged and am now resting at Homewood Suites. Don't have the energy for much else.
I can answer on the PT/OT. I met with Jen who went over lymphadema risk. She measures the arm to wrap during surgery. The next day when the wrap comes off, Jen comes back and massages the arm.0 -
Ref, you are doing great! I stayed one extra night and I didn't get my breast drains out until the post op appt at 7 days. Just rest, keep well hydrated and walk when you can.
I wonder if they are calling the Jen visits OT/PT instead of just a consult. I loved her!! Love the massages.
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Yes, the massages are really nice and Jen is so sweet. I think you are right that it's just a name change. I was a bit annoyed with myself for feeling so sluggish after I was already doing so well. I may be a bit nauseated from the Percocet. May try to take extra strength Tylenol for my next dose and see how that goes.
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Ref -only two nights there after stacked? I'm impressed and thank you for the info and my post op appt is with the PA laura Frese Dr S will be out of town .I need a letter that says I can return back to work they found out about my surgery. I had my ovaries out on a Fri and went back to work on Mon. i never told them. Im in on Wed for surgery and discharged on Sat.
Doppler wires? never heard of them please explain
Cider- that is my first appt on Tues. OT/PT Jen and Kristin 10:00 Pre-op w St Charles Surgical Hosp- what do you do at that one? CTA next Then I get to meet Dr S at the center. done at 3:00
Thank you every one for all the help
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Lesliet - I was prepped for stacked but ended up with hip flaps only. Dr. S was able to get enough tissue without using the abdomen. During the surgery doppler wires are placed on the breasts. After surgery they continually monitor the flaps to make sure all is well with the blood flow.
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For me pre-op at the hosp was all the hosp paperwork, getting my vitals taken, meeting the anesthesiologist and getting a tour of the hosp. Ending at getting the CTA.
Ref, I think I tried to step down from percocet to tylenol on day 3 and it did not work well for me. I ended up getting over emotional and in hindsight I think it was because my pain was not managed well enough. It's so hard to tell them what number your pain is at! It took me just a bit to get back on balance w/pain meds. And be gentle with yourself! Energy goes up and down. Even at 3 1/2 weeks out my energy (and pain) comes and goes. Rest when you need to rest. I also think on my 3rd day I tried not to nap and that contributed to not having a very good day.
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doppler wires - they are in so that the docs can make sure the new flap has a good blood supply. They hook you up to a machine and hear whoosh whoosh whoosh.
I wish they had PT/OT when I was there! I would have loved it! Lucky ones!
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It turns out my nausea may be from the Bactrim. We are switching to Keflex. Hopefully that will help.
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I had PT after Stage 2, since I was showing lymphedema by then. Jen reviewed massage techniques in order to maintain better control. I had requested an appt with her. That was last March. Possibly they are now being more proactive, as measuring ahead of time is an excellent idea, otherwise there is no baseline to compare with if swelling persists after surgery. I know they have been upping their lymphedema awareness overall.
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While there is a normal range of post-surgical swelling for a few weeks, if one has a baseline measurement to compare, then it is way easier to move forward in treating possible lymphedema should it show up. Without a baseline, there is always a question as to when to treat, which can delay the issue longer than necessary. The earlier the better. Personally, I hope they schedule everyone with a PT appt. It's about 30 minutes long and really helps awareness in an area we often know little about.
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yes, the PT/OT is the lymphedema consult with Jen, plus the measuring for the arm wrap. When I was there almost 5 weeks ago (can't believe it!) she said that was the first week that they were giving these sessions to everyone, regardless of their risk. So my pre-op was Tuesday, Jen's second day of doing this with everyone and she started asking me about my cancer, etc. I told her my surgery was preventative and that I am BRCA1+ and she said, I kid you not, "what's that?" and "why would you have this surgery if you don't have cancer"--now most of you know by now that I'm pretty relentlessly positive about things in general but that was the day before my surgery and I was nervous and tired so I kinda snapped on Jen--it was not pretty. I was respectful and even-toned, but I told her it was very disconcerting for me as a patient about to go under the knife to be talking to someone at the center who had no idea about what I was going through and who had never heard of BRCA. I also told her I was too freaked out and exhausted over my impending surgery that I didn't have the strength to fully educate her on it and that she needed to educate herself pronto. She explained this was a new procedure for everyone and that I was her first preventative patient--I implored her to research BRCA ASAP so she would be prepared if other patients brought it up. I think I scared the sh*t outta poor Jen!
Well good on her, Jen came back to see me the next day after my surgery and then again the next day to perform the lymphedema massage (even though my risk was calculated as a 3 and no one thought it was necessary) and she made sure to tell me that she researched BRCA that same day and was now completely prepared for any other patients with genetic mutations. So the story ended well--I felt a little bad for losing my cool with her but hey, people employed by SCSH should know what BRCA is right?!?! :-)
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You assisted in a learning curve. Jen's focus has been on doing general training in those who are already displaying lymphedema-like symptoms, so she pops in for those appts and pops out. I don't think she hangs around the nurse's station much, so your comment was a good learning point for her. As well all know, many women are there under similar circumstances as yours. I know how unsettling it was for me to be telling the nurses about LE last year when I thought this should be part of their training. As it turned out, they are all in learning mode about lymphedema. Maybe a bit late, but at least they are on it now. With my local doctors, they totally have no interest in understanding lymphedema, or they say incorrect things about it. So, patience my friend. You helped someone along, although it may not have been with your usual grace.
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I just got all of my appts for July and I see my OT/PT appt with Jen and someone else too.. I fear mine will not be a baseline per se as I have already had nodes removed with my lumpectomy, but shouldn't need any more nodes removed with my DIEP surgery, and my MO says it shouldn't increase my LE risk... although had I chosen radiation instead, that would have increased my risk... But I do understand that with operating on the breast and working right there next to the nodes, anything can happen.
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Before my surgery 3+1/2 weeks ago my first goal was to be able to make it to my twin daughters H.S. graduation. I could not imagine what shape I'd be in and worried and fretted so. Part of me imagined still being in bed or being in a wheelchair or something! I kept asking Liz if she really thought I would make it. I'd been dreading this day, really, since my sons graduation 8 years ago, knowing that the day we drop our girls at college was getting ever so close . Well, PHEW, the day has come and nearly gone. ...When they left for rehearsal this morning I wept and wept, but my Stop-Crying-Mantra was " it's their day". I'm happy to report that I made it thru the ceremony, reception and dinner with no uncontrollable blubbering, no embarrassingly loud snuffles and sobs. A few (well, maybe a few more than a few....) quiet tears...but my husband was just as bad! Next hurdle...I go back to work tomorrow, which I can barely imagine, now less than 12 hours away. AND tomorrow is my 37th wedding anniversary! I am so grateful for the loving care my husband has given me through this ordeal. Never thought when we were 22 year olds in love it was going to include THIS down the line. Yikes. This is all waaay too much for someone who as been lying around , half the time in a hydrocodone haze, doing absolutely nothing for 3+1/2 weeks!
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Lots of milestones for you! Happy anniversary, happy kid's graduation and happy return to work. I hope all goes well your first day back.
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Thanks Tigsun:) Considering it's 2AM here, I expect I'll be pretty sleepy when that alarm goes off!
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Jerusha - I can't even imagine how that day will be when my daughters get married. Good for you for making it through!!! Good luck at work tomorrow - take it easy - you will do great!
Ref - Glad to hear you are okay... now, like Minnesota and Spring, you have Nola voodoo blood too!!!!
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