Lumpectomy Lounge....let's talk!
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PontiacPeg, you can always go in and speak to admissions director or social services and they may help you find "a reason" to keep him a bit longer. Sometimes like in the facility I worked at they got admitted to PT or OT services for 2 weeks or so and that always is beneficial to the patient. They know the ins and outs and if their #'s are low they go out of their way to keep someone. Good luck!!!!
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That's an excellent thought/idea, Charusa! I will definitely keep it in mind. The hospital PTs will have to decide he needs in-patient rehab. Considering DH's current abilities, any degradation should qualify for that. Keep your fingers and toes crossed that the surgery is done laparoscopically as planned. That will make his recovery easier.
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Thank you all girls for well wishes, my first day postop has gone quite well. This seems a little easier than first go around.
PontiacPeg.. I was reading about your husband, sorry to hear, but wanted to mention that Medicare covers for 21 day rehab stay for qualifiying hospital stay, and with his Parkinson's on top of surgery, think he might meet criteria. Your hospital should have case managers that can help guide you with his discharge plans. If he does go to rehab, and progresses well, he doesnt have to stay full 21 days, but it's there if he needs it. This would be for rehab in a skilled nursing facility, (nursing home). You may want to call hospital before his planned admit date and talk to case management, and get their input to better help you plan for his and your needs. Wishing you both the best.
RMlulu..hope you are able to get your hubby on the mend quick and you two can enjoy / relax this weekend.
PoppyK..I think I am feeling some of your fears! I still don't know if I will need chemo, my appts are on 9/22, and I still have to wait to see if I got clear margins with this surgery, as well as waiting on my oncotype results too. It is just so overwhelming.. my mind seems to never stop trying to plan and fix things, and I dont even know what to fix, lol ! Just please know you are not alone, others are walking with you and we are all holding on tightly to each other. I have found this web site to be an enormous help,wealth of knowledge, and wonderful support. Looking forward to progressing onward with you and the others!
God bless you all~
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Psalm: I'm a stage ahead of you on this journey, had my lumpectomy Jun 16. My onco score came back 27 so chemo was indicated, I had #3 last Thursday, only 1 left and then radiation. I know well that overwhelming feeling when there are still so many unknowns in the plan. It really brings home the philosophy of living one day at a time. Focus on what you have control over now, recovering, healing, eating healthy, getting your strength back. Then when you know if you have clean margins and have your onco score, you'll be ready to move on to the next step of the plan, whatever that may be. But letting your mind go to all the possible options wastes energy and takes you unnecessarily to dark places.
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Thank you everyone for the thoughts on my husband. He has stayed in rehab facilities 5 times (3 nursing homes and 2 in a hospital based rehab section). But first the staff needs to approve his stay anywhere. I'm pretty sure he won't qualify this time for the one in the hospital which provides the most intensive PT. I really don't foresee a problem.
Psalm, glad you're still feeling pretty good. That's such a help and a mood booster. Now we'll pray for clear margins and a great oncotype! Hopefully you won't have to wait until the 22nd to find out both. My surgeon called me the minute each of those came in and I sure appreciated that! Don't you hate when your mind goes around in circles for things you don't even know will occur? Me too. Maybe you can figure out how to distract yourself for the next 3 weeks
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Puffin, great advice.. just wish I was better at taking it, lol !! I have always joked that I am good at giving advice but not too good at taking it myself. Your words are very true,and I keep reminding myself that God does not put fear in us, nor does He want us to worry, but just to give Him our burdens. I noticed you mentioned chemo / rad but your Tx's dont show that. Was wondering if you didnt mind, if you would share what your treatment regimen has been. Our diagnosis are very similiar, from what I know at this point. I still dont know my stage, guess I get that when I see oncologist.
Pontiac.. thanks too. I will hear next week from my path.. the oncotype wont be back until another week, I think. We have a breast navigator at our hospital who keeps me on top of things, and I work there too, so I am constantly checking for my results myself. I think my working there and pushing kinda got things moving so quick.. they did my first and second bx the same day the ultrasound indicated need for one.. poor radiologists had their hands full with me. My appts on 9/22 are to meet with RO and Oncologist.. of course this is with expectation that margins have already come back clear.. These appts were time goaled following my first surgery. btw.. sounds like you are an expert on rehab, so glad you know the ropes and still wishing you both the best!
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Psalm, thanks for the good wishes. Not an expert but certainly I've been around the block quite a few times in the last 4 years (when DH had his heart attack which screwed up his short term memory and made his Parkinson's worse).
I, too, had mammograms, ultrasounds, core biopsy, and more mamms and ultrasounds on the same day. Worked out better for me since it is hard getting out with DH. I'd rather get it all done at once anyway.
It IS easier to give advice than take it. And, as my BS told me, THINK POSITIVE, when I was worrying about what my onco score would be. She (and the RO) were quite sure I wouldn't need chemo but it was awfully reassuring having the onco score say so. Hope yours says so too. My BS staged my cancer. In fact, the path report staged it too. Please make sure you get copies of every report. We all keep them in case we need them.
HUGS!!!!
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Psalm: didn't realize I hadn't updated my treatments after my surgery, yes, ours are very similar: 1 cm tumor, clear margins, clean sentinel nodes. I had prayed that my onco score would not be in the grey area where "we'll discuss it", and so I got a score of 27, a grade 2 invasive. Prayers answered, just not the answer I was hoping for.
So I'm getting 4 rounds of taxotere/cytoxin, 3 weeks apart, with an injection of neulastin the day after chemo to stimulate the bone marrow to make white blood cells. The neulastin is working and my counts have remained good. Overall chemo hasn't been that bad. The first session caused my diverticulosis to flare up, I met with the dietician and am following her recommendations and that hasn't been a problem with subsequent sessions. The steroids I get with each round make my legs swell for about 3 days and my legs are weak enough that I've been using a cane, and my face gets really flushed. But I've had no problems with nausea or vomiting. And then, about day 4 or 5 I'm feeling pretty good again and have about 2 good weeks where I just need to pace myself as I get tired if I try to do too much. I had read that taking Claritin the day before, the day of, and a few days after the neulastin shot helps prevent the bone pain some women develop. I've taken the Claritin and bone pain has not been a problem for me. The dietician also calculated that I should strive for 70 gm of protein during chemo and radiation, and I've been taking protein supplements to meet that goal.
I'll start radiation about 3 weeks after my last chemo, and after radiation will be taking arimidex for 5 years.
I pray for clean margins and a low onco score for you, but if that's not to be, it's doable.
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Puffin, sounds like you have a great team getting you through chemo with all sorts of good help. That's wonderful. Very encouraging for anyone facing chemo. Stay strong!
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Just a shout out to all you old lumpies and newbies! Thinking about all of you and praying for strength, peace and healing! Our journey continues. I'm home trying to get some extra relaxing and rest this long weekend (even though I did work 4 hours (audit prep work and cuz I only work 1/2 days cuz I'm going to radiation) today, but had peace and quiet as I was by myself!)
Happy Labor Day to you all!
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this is an unusual post. I had my preop thurs.. got mcds happy meal for breakfast/lunch..went up to disney for packet pick up.. got jamba juice ..went into disneyland.. shopped.. went bk to room to nap.. woke up and headed back to california adventure for pasta.. then.... i noticed my tongue felt funny.. went to restroom its totally swollen and im slurring. off to first aid. got benadryl .. chatted about racing.. swelling went down..ate went to bed. Lined up in the morning for my 5k.. found a newbie ..adopted her.. we did the 5k took a pic and went on our way. went to mcds for breakfast..napped..went to park ate my fav salad for lunch.. ping ponged both parks.. sat and ate blueberry crisp things that came in after race bag (they have them at trader joes, they are yummy) on the last bite.. my lip started swelling.. now at disney first aid, handed me more benadryl .. noticed it wasnt getting worse..saved the meds back to room to nap.. woke up....lip triple in size, i almost have no voice, and i have knots all over my forehead. Disney people had given me a list of local ers, urgent cares.. called hubby.. took off to urgent care.. shot of benadryl, shot of steroids, and prednisone. even by the time i was checking out i sounded better and my lip didnt feel as tight. NO idea what caused this.. the joke is im allergic to mickey mouse :P i had no tinging, itching, hives. BUT heres the kicker.. I have my lx scheduled for tues ... with a random allergic reaction im worried the will push this off.
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oh and hubby, mom, and bff sort of think this is an internal reaction to boob drama that im not "dealing with it" and this is stress induced and not allergy caused. This has been one hell of a summer
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Panthrah,
That sounds horrible! As if you don't have enough to be concerned about right now. What did the ER docs say? Do they think it is allergy induced? Check your pre-op paperwork, there should be a number you can call and let them know your concerns. Call your surgeon, too.
BTW, you are "dealing with it". I think as long as you are following your treatment plan, you are dealing with it. Don't change your behavior just because it doesn't meet other people's expectations of how you should be behaving and feeling! I really don't understand why those closest to us think they should say the most inappropriate, hurtful things.
Yep, this summer is pretty darn horrible.
Poppy
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The er doc did say allergy but doesnt know to what of course. kind of looked like A. permanent duck face , B. husband said Homer Simpson C. Too much collagen.and being a holiday weekend im sure my crew wont be there. tues morning Ill let them know of course. check in is 8am.. surgery isnt till 1145.
Dr Google ( and peoples stories ) have informed me that yes this can be stressed induced. which as odd as it sounds.. makes me feel better
cause if i was allergic to Disneyland.. life would be over 
I have not had a melt down over this yet and I do feel like Im reaching a tipping point. something lame will push me over the edge.. like a sappy commercial hehe. I thought the 5k would help .. it didnt.. maybe I need to go back to roller derby to get my stress out (kind of took the summer off) stress i can manage.. unknown allergy is hard to manage 0 -
People pay a lot money for that duck face look! Hmmm, figure out what caused it, put it in some lip balm.... maybe make enough money to cover all the medical co-pays... But if it makes you look like Homer Simpson, it will be hard to sell. DHs say the most wonderful things. :-)
I've melted down twice. Once when I was first diagnosed and my teen boy was being very difficult. The other time was the first time I got a full view of myself post surgery. I didn't look bad, I was just emotional because I SAW what I was having to do to kick cancer's sorry a$$. I've been stressed and anxious. As long as we are moving forward and taking care of business, NO ONE should be telling us we are doing it wrong.
Doctors usually have a service for after hours/weekend calls. Either my surgeon or one of his residents returns my calls.
Poppy
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Oh my DH has some winners let me tell you. but he steps up when needs to so his comments are excused with a punch on the arm or a smack to the gut . Ill see what occurs over the next few days being home.. if things flare up again or go away. Ill break.. itll happen.. dont know when or for how long. I know my secret stash of movie that will send me over the edge if needed hehe but til then Ill watch an overwhelming amount of funny videos to crack me up
thatll help take the edge off. more benadryl before bed (way to early to sleep on sat night ) then tomorrow is a whole new day. 0 -
panthra....what did you eat at mcdonalds? Seems like you went there for breakfast and hours later you had a reaction?? Not sure if an allergic reaction can occur hours after you eat something...jot it down and if you eat the food again and have a reaction then that may be it....or it could be a combination of foods? But I am not a doctor! Just noticed you hit mcd's each time....oh...jamba juice/blueberry thingy from trader joes? Was Jamba Juice fruity?. Just so sorry you have to deal with this....and YES...this summer sucked.
Good luck dear and hang in there....this bc crap is a roller coaster ride...without the thrill and excitement!! Rosie
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Panthrah, what a wild day you had. I agree - nobody needs reactions like that. Thank heavens benadryl helped. Very scary. I think I'd be tempted to just eat at home in case it was some sort of food allergy.
As PoppyK said, most of your docs have an answering service and will call you right back.
Remember to breathe for the next THREE days. You'll do just fine. Waiting is harder than the surgery.
Hugs!
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Mcds is my go to quick food. always the same thing. happy meal or egg mc muffin for years ( ate it x3 a day during college and i was the skinniest ive ever been) the other common thing is apples.. apple jamba juice (i think) , apples with happy meal, and apple pie.. yet i had apples last night at home and nothing.
Oh well .. today is laundry /clean the house and chase the cats
tomorrow is finish what I didnt do and chase the cats again we are also having a potluck with the neighborhood ( almost unheard of these days) and we are the "young ones" of the group so I suppose we (meaning the DH) should make something for that hehe0 -
Sounds like a great way to spend the holiday, Panthrah!
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yep.. not too bad
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Hi Everyone! Hope you are all enjoying a wonderful long weekend!
Glad you came through re excision with ease Psalm. I'm sure the margins will be clear this time!
Sorry you are having such a hard time after surgery PoppyK. I too am new to BC and will have Lump (Right) and SNB on Sept 25. Then rads a month after that I was told but I guess it all depends on Path as you found out. Good luck with your MO appt this week.
Thanks RMlulu. Sorry your husband is ill. Hope he's on his way to a full recovery. Wouldn't a magic wand be wonderful?
Thanks Charusa. I've been running into roadblocks where respite is concerned for my DH. I'm in Canada but Home Health told me there wasn't enough time to arrange anything but gave me a phone number for private care facility. We went to appt for respite care and they have 2 care aides to cover the facility and maybe they could help DH every 2 hrs. $120 per day and $10 per 15 min Care Aid assistance. It was a very nice retirement place but their respite care is for those who can dress, toilet and manage meds etc etc which made me wonder why they would even need respite lol. My DH has good moments and bad moments with his PD so it wouldn't work for him there. I'm sure the manager didn't mean anything by it but when we told her reason for respite care she said "oh, you're just having a lumpectomy ". The Breast Centre social worker is back from holidays this week so will talk to her.
I totally understand PontiacPeggy. My DH gets worse in hospital and is happier being home. Will your DH need other treatment besides his surgery?
What I really want is for the Drs to say they made a mistake and I don't have BC. I know I can handle this as I always do but I'm the fixer, the problem solver, the one who takes care of everybody else! This is crazy!
Thanks for letting me vent some frustration
I've been doing all those projects from my list that I've been putting off lol. I'm hoping 3 1/2 weeks will go faster this way!Take Care!
Sue
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Sue, obviously your idea (and mine) for respite care didn't jibe with anyone else's. My DH hasn't been able to do anything by himself today. I'm sure that manager was clueless. Hope she stays that way. I'm going to talk to my Nurse Navigator tomorrow to see if I can get help for overnights until DH has his surgery. His surgeon says that he won't need any other treatment, so that's good.
I'm ready for rad #1 tomorrow. I also meet with my MO tomorrow - DH's brother is going to stay with him for that. DH gets to tag along for the rads.
You'll get through this! Waiting is awfully hard though. In your pocket!
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Hi Peggy! Sorry, I didn't mention that she'd told me she was a young BC survivor with BMX but still... How is your DH feeling now? I'm glad he won't need any other treatment after surgery. I find my DH's mobility is affected a lot by an illness (cold etc), his bowels, and anxiety of course. The nights are so unpredictable aren't they? Once is heaven and five is not ! Good luck with your rads tomorrow. Yes my DH wants to go with me too. Take care!
Sue
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Psalm praying you have clear margins this time. I have my re-excision next week. Cindy sorry to hear about your husband. I hope he is doing better. Peggy I hope your husband does well with his upcoming surgery. I go tomorrow to have an US on my ovaries just to stay on top of things since my grandma had both ovarian and breast ca. My Gyn wants to be proactive. Have a lot of doctor appointments this week. Just got back from Chicago. Hope everyone had a good weekend.
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Sue, PD IS so unpredictable. Today DH hasn't been able to do anything by himself. I'd kill for a night where he gets me up only once. You're right that illness makes his mobility worse but it seems the alignment of the moon and stars do too
DH doesn't really want to go to my rads. He'll sit in the car most likely. But I have this nightmare that I'll come home and find him dead on the floor from a fall. His balance is terrible. My former boss' father died that way. I don't feel comfortable leaving him alone for more than 15 minutes. Only another PD caregiver can understand the total lack of sleep that afflicts us. Even naps are difficult to come by.
Nancy, good luck with your US tomorrow. I'm glad your gyn is being proactive. It is has to be worrisome for you. Nothing like a week loaded with doctor appointments.
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Peggy you are right especially ovarian cancer. There really are not very many symptoms from what I understand at least right away anyway, and since both my Aunt and grandma had it it is scary.
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I think that that is the scariest thing about ovarian cancer - no symptoms. A friend of my son's was diagnosed 2-3 years ago AFTER a year of telling every doctor something was wrong. She's doing well and is all clear though she carries one of the BRCA genes. Just keep on top of it. So many choices and hard decisions
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good luck with U/S tomorrow ncollett. It must be a worry for you but also glad that your Gyn isn't leaving anything to chance. Yes I worry about that too Peggy. DH likes to sit in the car too. He can as long as weather isn't too warm. Heat intolerance issues. I hadn't thought about the moon and the stars
I do blame crankiness on lack of sleep though! Lol0 -
Sue, crankiness on whose part? DH's or your own. My patience ended about noon today. He managed to go to the bathroom by himself once today. He leans so far left that his head is virtually on the arm of his arm chair and, as you know, pulling them upright is nothing but dead weight. Definitely sleep deprived.
Luckily, DH doesn't have heat issues for the most part. I leave the car running - cheaper to waste gas than pay someone to sit with him. And he doesn't mind sitting in the car reading.
I really thought I had enough on my plate with his Parkinson's, heart issues and short term memory deficit. Guess not. (End of feeling very sorry for myself)
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