Lumpectomy Lounge....let's talk!
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Ringelle -- Sorry to hear the bad news. I hope they will let you have some resting and healing time, at least! And maybe time to get a 2nd Op if you still have questions. --and yes, many, many hugs to you.
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I didn't get an Oncotype test... I think it wasn't right for my dx? (the HER2+, PR-???) I was also going to get chemo no matter what, and got it neoadjuvently, which was the protocol for TCHP, I think?
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Having visitors/company is definitely not my thing! I'm kind of an introvert to begin with. Hate house-cleaning. etc. People definitely wanted to come and visit, but that would have been TERRIBLE for me. Even having my sister helping me out wasn't comfortable for me. And most of the time I was very happy to go to appointments and chemo and RT and all that on my own. Having people around means I have to pay attention to them. Even my sister, who knows me and isn't really any trouble. I would prefer to even get myself to surgery on my own if I could (I've hired special driving services for procedures like colonoscopies before).
Anyway, I did actually have some guests at my house a month after Lx and right before RT, which is a super-rare thing (as in NEVER). I warned them that I'd just been busy with chemo and surgery since December, so the house was a mess and I wasn't going to be cleaning it up. They said they were fine with it and would be happy to stay in a hotel... but I knew they would be no problem as guests, and also, by that time, I had been involved in so much cancer stuff and no normal life that even I was feeling like being social!!! So I asked them to stay a few nights. I ended up cleaning some stuff up, of course. But it was kind of nice to be doing something like that after such a long while. And I drove them around and we had a nice relaxing time... It was good. But I definitely wasn't going to put myself out for them during a more stressful time. It was just a good thing that at that point I was feeling more normal, getting over surgery and months of chemo, and it was actually a nice break!
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So....the MO's office called again to ask the SAME questions she asked me when they called two days ago....at least this time she did have the pathology/post surgery report which she didn't have last time, but still, I have to say, it does not increase my already wavering confidence to have her say to me.. "I know I asked you this before but I want to be sure I got the answers right..." I mean these were simple yes/no questions (such as 'have you had a bone density test?" ) How hard could it have been to record the answer the first time?
I guess it isn't a big deal in the big scheme of things but it stresses me out. Just hung up phone and now I feel like crying. I don't know how I will feel about MO but I sure as hell know I am not impressed with his staff!
Thank you for letting me whine and rant. It's Friday. Thank God.
Octogirl.
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Welll, Octogirl, it IS a big deal. That staff sounds incompetent. I hope the MO makes up for it. My PCP's office manager is so proud that she "doesn't do email." She is quite the obstructionist in the office. She's good at other things. But I want someone who can email test results etc. (Now that I'm getting most tests done at the hospital, I get them online from the hospital).
If I were you, I'd consider saying something to the MO about all this. You don't need staff being stupid.
HUGS!
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Thanks, Peggy. Depending on how it goes I may indeed say something to MO.
I am SOO with you about the email thing. I also can get hospital results on line, and really prefer that or email. Phone is just way more stressful for me: have to go answer, or else call back, and I hate phone tag! and, if they call me at the office, privacy is a concern. Plus, if it is via email you have some written record...just makes it easier to remember the communications and is more efficient.
By the way, in addition to these calls from the MO staff, I also got a robot-call reminding me of my Monday apt. As in: "to reconfirm, press 1. To cancel press 2. If you don't cancel or call to reschedule and do not keep this appointment there will be a $25 fee" Not exactly touchy feely. I understand why they have 'no show' fees, but I'd really prefer NOT to have to answer a call and press a number as if I were one......
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Octogirl, most of my appointment reminders are Press 1 etc.
I also like things in writing. Paper trails are good. I print everything!
I think I might say something even if you decide you want a different MO. He should know how his staff is treating patients!
HUGS!
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Oh Octo I am so with you on feeling like a number sometimes!0
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happy Friday!
My Bailey is here and settling in nicely!
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Great picture!0
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As an aside, I did not call BS to get my final pathology. Just decided to try and enjoy my weekend. I figure whatever I find out at my first MO apt Monday...I will deal with it. Hopefully it's good but aware it might not go as expected. Talk about a roller coaster ride. Mentally, I was so great post LX.. But it's so weird how doubt can start to creep in. Ugh! I hope it does get easier as some of you veterans have said
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Midgie, happy for you and cutie Bailey!!!
Plumster, I agree. Just enjoy the weekend. Keep thinking positive!
HUGS!!
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plumster, will be mentally holding hands as we dive into those MO apts Monday....hope they go very well for both of us!
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Guess I'm splitting myself in half so I can be in both of your pockets, Plumster and Octogirl! So it will be lopsided dancing you feel. But I'm with you both!!
HUGS!!
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Thanks for all the responses and well wishes! I wish I could say I got rest but unfortunately I did not! Today started out BAD! (Migrain, melt down and a good cry!) From there the day started looking up. I went to the chiropractor to get a massage and an adjustment (I knew I needed help relaxing) I came home and managed to figure out how to get my printer to accept a fax of my pathology report (i had this intense need to have my hands on that before the day was over) I then spent over an hour on the phone with my PS and he answered every possible question I could think of and more! (yeah - one less appointment) I then composed an email to my BS and low and behold I had a plan of action! I hate it - but I'm at peace with it! I'm almost positive I want to do a DMX with delayed reconstruction. PS is on board with my plan and even said he could adjust his schedule to be there to help. I ran said plan by my mom, hubby and a friend. They all said it sounded logical and right for me! (yeah for validation) Now I'm hoping BS buys into as I know it's more than he thinks I need to do. He did however say it is a very personal choice. I'm pretty sure he'll do whatever I decide at this point. I hope I'll hear back from him early next week. I feel like order has once again been temporarily restored and I'm shifting my head to preparations (at home, work and in my head) On a side note - my pathology report looked like a hot mess! Why does it seem like every report gets worse? Still nothing invasive but at this point not much would surprise me!
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Octo - how frustrating! This is not okay! With all the appointments and other things we have to take care of - the least they can do is record information properly! I agree that more stuff should be online. My PCM has a patient portal that I love! It even saved me unnecessary blood work before my MRI because I could prove some numbers to them. I don't like having to call and rely on someone to remember to call, email, mail, or fax something to me. It took 30 minutes for me to get the pathology results faxed to me! My only issue with the portal so far was when I got my first biopsy results on the portal because they didn't realize how fast the system posted it on my account and sent an email to let me know it was there! Whoops! Longest 20 minutes of my life!
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Wow! A lot of catching up to do with the thread.
I agree, Say NO to the company and extra "help".
Ringelle, so sorry about your news :0(
Midgie congrats on the new "baby" Adorable!
123 and plumster: 123justforme, my stats are similar to yours and grade one. If I had your ER/PR %'s I most likely wouldn't have bothered with oncotype either. Mine were low at 25% and I came back at a 23 score. I agree with your MO that your score will most likely be low but I would ask again if the score will give you peace of mind. I look at the ladies who have grade three node positives that surprise their team with a low score so anything is possible . Trust your gut !
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Ringelle, you have to feel better just having made a decision. I hate it when I can't make one. Now that you have made it, go with it. Don't look back. You have taken all the information and made an informed decision.
HUGS!!!!
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Plumster - I'm amazed you held off from calling! Waiting is THE WORST! I'd almost rather do everything twice rather than wait. I hope you enjoy your weekend! Plan things that will keep your mind off the waiting! Have fun! The second wait was much easier but it was also a week shorter!
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123JustMe - Yeah on your genetic results! So far my genetic results have been the only positive news I've had in this process! I hope this provides you with some relief!
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Midgie - love the new baby! enjoy!
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Ringelle: the decision--UMX or BMX--is yours, and I'll support you in whichever you choose. Though taking a day or two to melt down, weep, have a massage/chiropractic adjustment, discuss matters with your family, wait for the "Hildegard von Bingen" migraine symptoms to dissipate and whatever else you need to do is necessary!
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Awww Bailey is adorable. Ringelle,glad you have a plan.
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octogirl - maybe try something like this when you meet with the MO: "I'm really glad to meet with you because, honestly, the recent conversations I've had with your team have shook my confidence in them. I'm hoping talking with you today will overcome that..."
Ringelle: what a difference making a plan for yourself can do!
Ufta, when the bad news keeps coming! I've had a hard week with that. Being scared about HER2...second MO opinion next Tuesday. I wish I could cry about it all. For some reason I just never get there. There's always one more step, or result I'm waiting for...
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Hi everyone!!
I meant to call my MO yesterday to ask a question, but time got away from me and I didn't get the chance. I am hoping someone here is able to help me find my answer.
First, chemo sucks. I'm doing okay with it I guess, but my hair is falling out at an alarming rate and even though I was ready for it,it's still kinda traumatic.
I haven't been able to see my darling granddaughter for a month. My blood counts have been too low......until now, so there's a family picnic that a breast cancer support place is having this weekend and my MO says my blood is great and I'm good to go, I was so excited. BUT.....school starts next week and my granddaughter had to get immunizations on Friday. So, I have heard and read mixed answers regarding exposure to anyone that has recently been immunized. Can I get near my granddaughter? Can I hug her and kiss her and squeeze her???? I miss her so much. Please anyone that can let me know ASAP, I would really appreciate it 😊. Love and gentle hugs
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boblajo, Only vaccines with live virus in them would be any kind of risk. The only live vaccines these days are varicella and flu-mist.
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Thank you Molly50! I will check with my daughter and see what she was given! That is very encouraging to hear! I'm so looking forward to getting out of the house and outside!! I want to play with my granddaughter!
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Hi all i'm sorry I haven't read the most recent post. I try and start to cry. I want to respond and offer support to Those of you who have had bad news recently. But I'm in such a sad place right now that I just need to talk about me
I've been at my sons out of state swim meet since Thursday( today's Saturday) and I feel like I'm having a nervous break down And I need to talk about what's going on with me and feel that you guys are the only ones I can talk to right now. So I hope it's OK because I really need to vent and try to describe what I've dealing with. Im off my 0.05mg estrogen patch and my progesterone releasing IUD is out since er/pr both >3+. So a bit emotional is the word for me.
First, let me give you a little background on competitive swim meets: we drive to the pool for 6:30am warmups and a 9am start for the preliminaries events that lasts until 12 or 1pm. If you make it into the evening finals competition, you go back to the hotel around 2pm, eat lunch, take a power nap, and then go back to the pool for warmups-usually around 4:30pm for a 6pm start of the finals competition. Sometimes it ends at 9:30pm. Then try to find a fast dinner, dry out swim gear/towels, sleep and repeat for 2 or 3 days. There is so much activity going around you (the spectators-parents, etc) that it's really difficult to find a quiet spot -even in the parking lots. I went to my rental car this morning and cried for a few minutes before I realized that I had about five pairs of eyes watching me.
Second, a little info as to why this is important--my son loves swimming and has been competing year around since he was 7y/o. He will start his senior year in high school in a few weeks, and wishes to swim on a Division I college team. This is prime recruiting season and many swimmers have made verbal commitments to the big schools (Stanford, Duke, Auburn, etc) until the early signing period in Nov. He had been getting a lot of recruiting attention From coaches and schools up until three weeks ago.
I got the call that I have BC on July 7th, and we were suppose to leave for a big deal sectional swim meet the next day. My son had 3 or 4 College coaches who had arranged to watch him at the meet and to talk with him about recruiting (Ryan Lochte along with four other Olympians swam at that meet.) I made the decision to not tell him about my breast cancer until after that meet was over. He swam OK and had coaches waiting to talk with him. All good. When we got back home on July 13, I told him all about my cancer and think I did A pretty good job. I consulted with some psychologist friends along with a couple of sports psychologist. He seemed to take the news in stride
I encouraged him to not hold things in and offered different resources for him if you needed it. He has chosen Not to tell any of his friends 99% of them are swimmers. I'm sorry this is so long, but this is part of what's going on with me. My sons times this national meet, and our state championship meet last weekend have been painfully slow. The college coaches have stopped calling and emailing. It was his 17th bday yesterday and it took everything I had to keep from dissolving into a puddle of tears in front of him because of his disappointment. It was so hard to be the positive encouraging supportive parent. But I managed. Somewhat. I had a crisis at work that involved hours of negotiations over the phone while trying to juggle the meet and arrange a birthday dinner with the handful of teammates who are here. And then sit with parents all talking about college recruiting when I just wanted to drink martinis. Sadly all but one were teetotalers so i only had one small glass of wine to nurse.
I haven't told any of the swim parents just because of worry that their kid overhears it and trys to offer condolences to my son at a meet-it could really throw his game off even more. Imagine a swimmer standing behind the diving blocks trying to focus on his race and a teammate comes by and says "hey I'm really sorry to hear about your mom".... So Im lonely, and tired, emotional, and my heart is breaking for my son. My boob is swollen and sore. Im constipated from traveling and from the muscle relaxers from last week. And of course I can't help but stress about the coincidence in the timing of me telling about my cancer and his slump. Can you say unconscious guilt?
My back/rib is a lot better but still tender and stadium steps and bleachers are not helpful. My 3rd rescheduled appt with the MO is on for Monday 9am (we fly back on Sunday midnight) but my repeated Her2 results were not back as of Friday afternoon and the MO goes on a 2 ir 3 week vacation after Monday. the scheduling girl for the MO would not make an appointment for me with a new MO later next week because she said "it's complicated" she said my MO would be happy to talk to me over the phone after Her2 comes back but I want to sit down and look at my options in person and not be rushed over the phone.
As i read this over it doesn't sound like a big deal and that I'm just being over involved. I swear im not a helicopter parent. This college recruiting stuff is fast and intense and there are so many NCAA rules to observe. But even the most solicitous coaches have stopped their correspondence. Dead quiet on calls and emails. and the look on my sons face when he sees his time on the scoreboard is the one that will break any parents heart. And the high maintenance of these prelim-final meets leave precious little time to process what im feeling.
I am so so sorry to have written so much but im hiding in the bathtub and needed to get this out. Please. I need hugs. Bad. I feel so sad and lonely and needed this pity party. Thanks for listening. I really appreciate it! Sweetmama
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sweetmomma- big hug going out to you! I am out running errands and heading home but wanted to send a quick response. You are right about thinking we can understand what you are going through! We each have our own personal stories and unique details but we all understand the onslaught of emotions and trying to keep it together for our lives ones while falling apart at the same time. I started to feel bad about unloading the other day because I felt what right did I have to be "all about me" when everyone here needs support. The thing is for each of us we have "all about me" moments on this roller coaster but we also have periods of sanity when we can listen and encourage. I'm coming out of my current "all about me moment" and feel like I have a little to give! That's what makes this board work. Take your moment and work through it how you need to. We are here and in your corner. I will write more when I get home You are not alon
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Hugs I can send you! Rest assured that, reading your post over, what you've been through is NOT "no big deal", and my experience is very different from yours (no kids, never competed in an athletic meet of any kind). I regret that I can't offer any more specific advice or comfort.
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Ringelle and queenmamacat, my head is down, buried in a pretend read of the heat sheet for tonight's final events as tears are falling down my cheeks. Glad my hair is in the way and that i wear glasses. Thank you. I cant read any more until this session is over but will relish every word tonight once my son is sleeping.
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SweetMamaJ, HUGS! It's too bad you don't have anyone close by you to share your burden with. Far too much going on for you and not a damn thing you can do about it. Keep slogging through. Encourage your son and tell him that you are going to be just fine (you will be!). And of course all this is helped by the estrogen you've gone off. I don't know how old you are but sounds like that roller coaster called menopause (or faux menopause).
Ask your MO for help! He CAN help you. Tell him everything you've posted here. He needs to know what is going on in your life.
Poor you with all those teetotalers
It gets better!HUGS!!!!.
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