Lumpectomy Lounge....let's talk!
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Sweetmammaj....first off (((hugs))). I remember trying to keep things together for my 16 year old daughter. I did not want her to see me worried so I kept it all inside. I couldn't wait until dinner was done and I could pop a Xanax and drift off to sleep. The hardest part was not knowing the extent of treatment. Once I knew it got easier. Fortunately, all I had to deal with was getting her to and from school and getting dinner on the table. I can't imagine the added stress of swim meets. Hang in there and have a pity party anytime...we'll all come! 🎈🎉🎈
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sweetmamaj:
Huge and yet gentle hugs!!! I so wish I could be there to have a stiff martini with my surgery twin.
Of course it is a big deal. We have your back here. I know you feel so responsible for your son's times, but he's your son, at his age I think you didn't really have much choice about telling him before surgery. Just my opinion. Don't second guess your self, and try not to feel guilty and responsible even though you do. As for the teetotalers, of course they don't need to know anything. Screw them.
I know this won't be all that helpful in the middle of the meet, but I bet your tiredness isn't helping your emotional state either. I know taking it easy is easy to say and hard to do with all the scouts around, but try to rest as much as you can. For your own sake and for your sons.
By the way, I work at a university. I am not involved in athletics or even too much in student affairs, but believe me when i tell you that I know helicopter moms, and you are not one just because you feel for your son when he is disappointed.
and yes, let the MO know what you are going through, especially since taking off the estrogen patch probably doesn't help your emotional state (I am guessing?)
You are not alone, as the others have said.
Octogirl
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Big hugs! I am sorry you are on this emotional roller coaster. I can't add much either since I don't have kids but quite honestly you are doing amazingly well. It's so hard when you don't have all the answers at your fingertips and I know at least I always expect the worse. Remember to breathe and know that others are thinking positive thoughts for you and your family.0
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((Hugs Sweetmamaj!)) You have so much to deal with!
My boys were 16, 15 and 11 when I was diagnosed. They each handled my diagnosis differently. I told them I was going to be okay, but that it would take a year. I would always be truthful with them and would talk to them anytime and answer any questions. The 16 year old was going to start his senior year. His group of friends are the studious, AP class kids.... top of the class, many schools looking to recruit them. Between my diagnosis and a friends' suicide attempt, he crashed. He stopped doing school work, became angry, very depressed. We got him counseling... a lot of it. The program that seemed to help was a program for teens who had serious medical issues or someone in their family did. He's doing better now, but still is not where he needs to be.
I'm sharing this to try to help and support you. You truly are not alone in trying to deal with cancer and help your kids. Would your son allow the two of you to talk to his coach and make him aware of your diagnosis? I did this with my middle son's tennis coach and it was a help. If my son was having a bad day on the court or seemed distracted, the coach would support him instead of unintentionally making the situation worse. It was helpful for my sons to KNOW that I was going to be okay and hear this from another source... not just me. Would he like to go to the MO with you? Would he be reassured by reading a fact sheet about your particular cancer diagnosis? I understand the swim meet drill (Tyler Clary graduated from our high school). It's unfortunate that the recruiting period coincides with your treatment. It was very painful for me to watch my son as his college offers dried up, which made his depression worse. Ask your son if he would like to talk to a counselor. Being a teenager is hard enough without all that is going on in his life. I was amazed to meet so many wonderful "normal" kids, with good family lives, who needed counseling. And sometimes antidepressants.
I'm sorry you don't have any time for yourself or privacy to just decompress for a bit. If you don't like the stares of the other swim parents, you have permission to lie. Such as "Oh, I'm just a bit distracted because my dear Aunt Sophie isn't doing so well." I usually say who cares what others think, but it might bring you some peace if you don't feel their curious eyes on you. Have you thought about counseling or antidepressants/antianxiety meds for yourself? The meds made a huge difference for me.
Let me know if I can support/help you in any way!
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Poppy, you always have such thoughtful suggestions. The most important was for SweetMammaJ to talk to someone. There's nothing worse than having no one to share with. We are a good support system but sometimes it is nice to have a warm, understanding body to hug. I have good friends, great (adult) kids (when they can be here), and sister-in-law. My warm bodies. And the great friends here WERE helpful because many of them understood the issues I was having with my husband - just like you understand SweetMamma's challenges with her son. You've been there! (Nice to have made it a year, isn't it??)
HUGS!!!
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PoppyK really speaks from a place of the wisdom of having been there, I think...the 'my poor Aunt Sophie' approach may be better than my suggestion to ignore or 'screw' them, and I think I will borrow it if someone catches me with tears in my eyes. I haven't told very many people at all, and I dread having to tell people I am not close to...even a few people I am close to don't know. I just want a lot of privacy right now...so I know it must be hard when you can't find that.
Telling my kids was the hardest thing I had to do. I dreaded it. Both are adults now, and it was still very, very tough. I can't imagine going through this when they were teenagers. Because they both live far from me, I haven't seen either one of my kids yet since I told them. Will be seeing both of them next weekend at a family wedding (and spending some time together before and after) and I am worried that our tears may give us away to others at the wedding we haven't told. I guess we will have to say they are tears of joy that my sister's oldest finally tied the knot! :-)
Sending more hugs!
Octo.
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sweetmamaj my kids are much younger, so my challenges are much different. However, from reading your post it sounds like your schedule is positively grueling. I am wondering if there are times when you could just excuse yourself and go lie down and rest for a bit? Or ask someone to bring you takeout to the hotel..in order to be there for your son, you have to be there for yourself. It sounds like you need more rest.
Secondly, have you tried to talk to your son about his times? It might not be that your diagnosis is the cause. Maybe he's just feeling the pressure of the meets and it's throwing him off. Has he talked to his coach about his times?
I think you should go to bed as early as you can tonight with an Ativan and try to rest. Everything always seems clearer (at least to me) with a solid nights sleep.
Hugs. As Peggy says, we will all be dancing in your pocket tomorrow thinking of you fondly.
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SweetMamaJ: I think we all understand and have been there in similar situations. BC is just so stressful to all who have it or care about someone. My nephew whom I'm very close to was a competitive swimmer. He went to WV. I've been to a few meets and it is tough sitting in loud, hot and humid pool areas so I know where you are coming from. I understand not wanting to tell certain people, I sure didn't even friends who I knew would be supportive. Continue to vent when you need to nothing wrong with a good cry and a little pity party. Hugs to you. We're all here.
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Sending gentle hugs to you, sweetmamaj
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All,
My son is falling asleep and my tears are falling as I read your loving words of encouragement. THANK YOU!!!
Ringelle, thank you for understanding--for validating that this group really knows what is going on- and saying , "you are not alone" so fast You eased my fear that I was being selfish and confusing. Hugs back!
Queenmomcat, thank you for telling me that i really do have something valid to mop about on this board. To me, empathy is a quality that comes from within and is not dependent on experience. I don't require my BS to have had BC in order to be a good, sensitive surgeon. Your non-parenting and non-athletic background did not minimize the value of your words. Hugs back!
Pontiac, my 2 closest cousins just left for Italy last weekend, though they texted me at the airports. Our older son issympathetic but awkward and avoids the subject. I have encountered my younger son to talk and I keep him updated on positive results. And my best girlfriend has gone to Canada for a family matter. I did call another friend during my work crisis-mostly to consult about the case-because I needed to focus on that-but she asked me a little about my status. You are correct abt the hormone withdrawal. The periodic FSH testing hadn't really yielded a conclusive menopausal status. But I am weepy and emotional. Im not real confident that my MO would want to take the time to listen, but its a good thought!, thank you! Hugs back!
Nash,thank you--so true-trying to hold it together at dinner, and then not knowing the treatment!! Its so frustrating that i still dont know my Her2 status after 3 submissions to the lab. And then waiting to see if oncotype will be recommended after the Her2 finally comes back. Hugs back!!
Octotwin! Thank you! I would love to drink a martini with you. I do believe that I did the right thing by telling him--and im happy with the depth of our talk.i also believe that situations of crisis can give someone the opportunity to become stronger by learning about their own inner strengths. Oh jeeze im beginning to sound a bit lofty. Sigh. Im still a mamabear and have instincts to protect my cub--even if I cant rationally do anything. It just hurts emotionally. Thanks for reminding me to rest. As Peggy also guessed, the hormones are wreaking havoc! Hugs back!!
123justme, thank you for your encouragement! Im glad someone thinks I am doing well
. You got a smile out of me--and thank you for thinking positive thoughts when I cannot. Hugs back!Poppy,thank you for sharing your story! i've encouraged him to see a counselor--for feelings about my BC and/or help Im actually in the field so he is familiar and not fearful of a stigma thats often associated with psychology. I took him to my follow up appt with BC along with 1st meeting with RO (i called both docs ahead of time to run it by them) so he saw their optimistic assessments. His coach is a different story and we've decided to not immediately tell him.I like your suggestion abt aunt sophie. I hope your son is doing better
. Major Hugs back!Tresjoli2, thank you for reminding me to put the O2 mask on myself before I assist any children or the eldey. I forget to practice what I preach and i know i need to take care of myself. I also think my son's slump might be due in part to the tremendous pressure of college recruiting, seeing his friends make olympic trials cuts,etc Unfortunately, he's a fairly typical teenage boy in the regard that he doesn't articulate his feelings very well. Hugs back!!
Msj1266, yes, so you do know the environment-chlorine fumes permeating the air, women's rest rooms with only 2 stalls--one usually taken over by swimmers who don't want to change in the locker room, heavy doors that do a number on healing incisions, and no little areas of sanctuary except in your mind... Thank you. My mind certainty has been the antithesis of calmness this week and i really needed my pity party. Hugs back!
Molly, thank you. Every hug is so appreciated! Hugs back!
Y'ALL: I am so overwhelmed and touched by your kindness and generosity and support!! I am crying in the hotel bathroom, and typing on my phone with one finger and in dim light. Later Iwill read and re-read every single word that you wrote to me and treasure it always. Im so sorry that i still have not had time to read the last several days of posts but I will be i get back home. Im going to sleep now (its 12:30am) and we fly out tomorrow night after the meet so i probably won't write again until Monday. But know that your hugs really came through!!!! Thank you thank you thank you dear Lx sisters of mine. Xxoxoxo. Sweetmama j
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Sweet mammalj. I am so sorry for what you are going through. I have two kids and understand the highly competitive environment of high school athletics. What an Incredibily stressfully time for you. I can only imagine, the amount of love and time you and your son have put into swimming. What pressure! Just continue to take deep breaths and know we are all here to support you!0
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Sweet dreams! I love this wonderful group of women.
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This group IS fantastic. SweetMamaJ, just try to get through today. Use your good arm to open doors
Hug your son, tell him you love him, think he's the best son ever, to do his best at the meet today and you'll love him no matter what. When you get home, find the right doctor, see if you need antidepressants (which can sometimes help with all the love menopausal symptoms you've been experiencing). I suspect if you can slow down and breathe everything will be a bit easier to cope with. Perhaps both you and your son need counseling right now. Your cancer center might have the resources you need.
Remind yourself that things will get better and you'll be fine! The road to being fine may be rocky but most women find it doable because we're determined to be fine and CANCER FREE! Keep your eye on the goal. Try to be POSITIVE hard though that may be right now. Think one positive thought each day: My incisions hurt less, I survived the most awful weekend of swim meets in the history of womankind, I have great kids. Keep reminding yourself of the good things in your life. When you're depressed those are hard things to do but give it a try.
Tend to "Aunt Sophie" whenever you need a respite from the demands of other people.
Most of all gentle loving HUGS to you. We're all with you.
HUGS!!
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Hugs, sweetmama! And strength for today. That schedule sounds undoing for anyone. I hope you can find moments to step away and reread messages that encourage you.
We've all done that horrible waiting, and experienced the pushing on through, even when we want to curl up in a ball. You are so lovingly pouring yourself out for your son this weekend. It may take him years to understand it. But you know the sacrifice you are making this weekend. You sure have the right user name! Haha
I'd like to encourage you to plan for any and everything you can do for yourself tomorrow and early in this next week. That swim meet-turnaround to doc visit is brutal. What can you strip off the next few days for rest and self care? Sleep. Pampering. A listening friend. Quiet time, prayer, meditation. Ice cream! Scheduling a support appointment...whatever lifts you up
Here's a couple more (((Hugs))) to put in your pocket for later!
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'I need to take care of poor Aunt Sophie': WooHoo Ladies, I think we just invented some new 'code' language! Thanks to PoppyK!
Sweetmamaj: more hugs and will be thinking about you today. Hope you find a way to get some rest. We will be mentally be there in the stands and on plane ride home with you...
Love and hugs from my patio, where it is a beautiful morning in the Great Central Valley, to you all!
Octo
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Sweetmamaj--more loving hugs for you.
You seem to be a wonderful, supportive mom. Your son so lucky to have you.
It is so painful to feel alone. I can't imagine how difficult it was for you to be in that swim meet environment. It is a testament of the love you have for you son.
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OK I am totally in love with "I have to go take care of Aunt Sophie"
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I just love the taking care of "poor Aunt Sophie!" I'm going to have to use that! I'm so tired of telling my story to people! I know really it's none of anyone's business but when it comes to the families at my school, I feel like I need to be open with them so they know why all of a sudden I'm not around much! I'm going to be talking to the board tomorrow about putting out a basic letter/email to the families so I can just cover all basis and not have to keep telling people all the time. I am grateful I have such a large support network but really I just want my few close peeps. Rumors are starting to spread and I'm getting emails and phone calls - UGH - I'm drained!
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Sweetmama - I hope you are feeling better. I know we probably won't hear from you tomorrow but I'm hoping for safe travels and some rest. I was a competitive swimmer until my early 20's. I could totally visualize the situation you were describing yesterday. I can't imagine the pressure and exhaustion you are going through. I also remember how my mom was always with me at my meets. Yes I had coaches, but mom was always there. It's a natural place for mom to be. I do understand why you think your son's times may have something to do with the news you've shared with him. I'm not saying this to make you feel bad but to sort of validate your thoughts. Competitive swimming is a physical and mental sport. If the two aren't in synch, times and performance can definitely be off. Even if your son says he's handling things fine, he's processing. BUT!!!!! This is not your fault - nor is it in your control. It is what it is. Beating yourself up and feeling guilty isn't going to change anything. Unless swimming has drastically changed, one meet isn't going to make or break his swimming future. Swimmers have bad meets all the time. The next one could be the golden ticket. Don't forget there are so many other reasons for the meet to be off, including the temperature in and out of the pool! So many factors!!!! These head hunters will be around and they all talk. While it would be great for him to be actively head hunted, there are so many other opportunities out there - they will come around and choose to believe that the very best opportunity will come around at the right time for him. Besides, most of the time - it comes down to qualifying times! You either have them or you don't! Cancer can't beat this either! I look forward to hearing from you tomorrow and hopefully some news of something looking up for you! Remember - my offer stands!
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Ringelle, It's too bad when you want to just let a few people know what's going on, that it is almost necessary to tell the whole world. For me, it didn't matter. I shared with most everyone. I am not ashamed or embarrassed to have Breast Cancer. It's a fact. My DIL was the same way with her colon cancer (in her early 40s!). But I know that not everyone is comfortable "coming out." It's funny because I really don't share much about my life with anyone other than family and close friends. I'm very closed mouth.
I'm sure you are drained with all this. And you're still very tired and working hard to heal from your surgeries and you think you want more. All this is draining your energy and is depressing. No matter that the BMX is your decision (right now), it is still earth-shaking. In your email to the families, you might want to include something about "respecting your privacy at this time." Maybe that will keep the nosy ones off your back. And I wouldn't be very specific if you can avoid it. Minimum would breast cancer and surgery and that's it. Not specific surgery...just surgery. Take care.
HUGS!!!
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I'd like some opinions. I am 42 and have an almost 10 year old daughter. I have been very open with her about my whole diagnosis and treatment - in fact - she was the first person I told after I got my dx. She has processed things pretty well - up to this point. She was frustrated that I had to have a 2nd surgery and she has withdrawn quite a bit now that I've told her I need another one. She has heard me talking about my choices and my decision. Sometimes her perspective is amazing to me.
Today I asked her how she feels about my decision on having both breasts removed. She told me she understood that I have no choice but to remove the one but she didn't think it was a good idea to have the other one removed. In fact she said that I shouldn't even have my "good" breast reconstructed or lifted. When I asked her why - she started crying. I asked her more questions but she really didn't want to talk about it and even asked me to stop talking to her about it. She says she is not scared or worried. She even said it didn't matter what she thought because I was going to do what I wanted to do anyway. Yes - she really is only 10!
Here's some background! My child is a boobie girl! She almost exclusively nursed for almost 2 years and then she continued to comfort nurse about once a day until she was almost 3. I hope this isn't TMI (Yes - I was a 5'8" pacifier) As a baby and toddler she was a "skin to skin" bonder. Even after she stopped nursing, she would find comfort from holding one of my breasts or putting her head on my chest. (of course not in public!) There was even a time when she was really small that she could fall asleep on the other side of the bed from me and in about 5 minutes she would be up against me with her hand up my shirt and on my boob! We joked that she was a boob magnet! Obviously, as she has gotten older, she has grown out of these habits but she still likes to cuddle with me and put her head against my chest. My boobs are her comfort.
Like the rest of the moms here - my life is my family! I want to do absolutely the very best for my child. If I knew it was best for her, I would go the uni-boob route - for her. I feel selfish for wanting to remove a seemingly "perfectly good" breast and in turn, taking away something that my daughter associates with comfort. I've noticed that even since my surgeries - especially the resulting sloshing (which is still actively sloshing) - she has not wanted me to cuddle with her as much and seems almost grossed out..
It's a weird time - she's at that age where she's more independent and acting like she doesn't need me as much - but she still does. Watching her cry over me deciding to remove my breasts just crushed my heart! How much do we take our family's preferences (especially our children) into our decision! I just hate all the options! Today I had one of those moments "How did I get here?" 0 -
One more thing! Does anyone use essential oils for aroma or topical therapy? I'm not pushing any particular product but I wanted to share that I have had a lot of help from them. I got into oils last fall and started replacing my candles with diffusers and oil. I have found that certain oils have helped me "keep it together" or boost my spirit on days that are just crappy. They also have helped with pain control after surgery and headaches when I'm really stressed. I'm just curious if anyone else has been using oils?
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Ringelle, if I recall correctly, your BS said it wasn't necessary to have a mastectomy, right? This has been your choice. I'm not saying your wrong at all. However, I think your daughter may be feeling that things must be REALLY BAD if you are going to remove your breasts. If it weren't bad you wouldn't have to do that. You could keep them both. She is worried that you are going to DIE TOMORROW.
I think she would benefit from a bit of counseling at your cancer center. Perhaps it might help you, too. All of this a terrible thing for us to process let alone a 10 year old, whether very grown up or not. They just don't have the copnig skills we adults supposedly have. I think it has overwhelmed her. Hasn't it done that to you, too?
I can't remember, are your margins now clear? Is a 3rd surgery whether Lx or Mx necessary?
Wish I could be there to hug you in person.
HUGS!!
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Ringelle, I use NO essential oils etc. I have awful allergies so wouldn't be helpful to me. Just not into them at all. But glad they help you. That's what counts!
HUGS!!
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i have an 8yo boy Ringelle. I have him seeing a counselor once a week. It's his safe place to talk to someone and he knows it's private and he only shares if he wants to. He loves going and it's been a huge help to him.
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PontiacPeggy - Actually - I'm at the point now that I have to have a right MX. I've had 2 LX and the margins came back with positive anterior margins and close (.5mm) deep margins. At this point my BS feels like my only option is a MX. I agree! In fact, I only did the 2nd surgery to humor myself and my BS. I even told him in an email I thought it was going to be a colossal waste of time. I just didn't want to remove my breast if there was a chance of saving it. It is obvious now that it's not possible. If I was able to have immediate recon then I'd probably just do the one side but since recon is 6-8 months or more down the road - I just can't visualize myself with only one breast! I try - but I can't! I also can't get past the gut feel that something may be lurking in my left! I don't know why - science by all counts says it should be clear. I want to be wrong but my gut has checked out all the way so far.
I think I will definitely check out some counseling. Thank you for the advice.
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Ringelle, I thought reconstruction could begin immediately. Some of the women here have chosen to not do anything and are very happy with that decision. I think most have had BMX rather than UMX. I can see why you would want a BMX. What a terribly difficult decision to make. Whatever you decide - one or both - we're here to support you. YOU know your body best. YOU know what will make you feel the safest. So do what will fit both those criteria.
And try to get your daughter into see a counselor as soon as you can. It will help her.
HUGS!!!
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Ringelle...I've always been known as being opinionated, and my opinion (since you asked :-)) is that it really is your body and your decision. Do what you decide is right for you. I guess my opinion is: in the long run, what is right for you will also be what is right for your family.
I know from the very start I told my husband that I would discuss my options with him, and valued his opinion on my treatment, providers, etc., but that ultimately he didn't get a vote. (although honestly I don't think he would have wanted to 'vote' anyway). That's just how I saw it. At the beginning, I thought I wasn't a candidate for lx (based on what radiologist who did the ultrasound and biopsy told me, and location of tumor right below the nipple), and I knew the moment I was diagnosed that I was not interested in reconstruction if I did need a umx or bmx. I know it is the right decision for many, it just wasn't right for me. However, I also knew that I really did not want to lose my breast(s), so when the bs told me she could conserve the breast, though the nipple would have to go, I didn't hesitate and chose that option.
I would listen to your daughter when she says she doesn't want to talk about it. It really may be more than she can process and she is not an adult after all...and it might be that if she is starting to withdraw that counseling would help (?). I don't know, it is a tough one. Maybe she doesn't want a vote, so to speak.
You don't mention a husband; is her Dad in the picture? If yes, then while I think your decision as to what to do should be your decision, I would involve her Dad in the decision about how to approach her, what to say, what not to say...how to deal with her concerns.
I hope this helps!
Hugs!
Octo
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I think for some reconstruction can begin immediately. I think with how extensive this DCIS is proving to be, the BS doesn't want to start reconstruction if I need radiation. I've also got a higher BMI and A1C than my BS feels comfortable with. I've lost 30 pounds since DX but he really wants me to loose 25-30 more. He said he would do the reconstruction immediately if I really wanted but he wouldn't be as confident. If I do reconstruction, I want to give him the absolute best situation to work with. This is my body for the rest of my life. I don't want to rush it! Who knows, I might get used to the freedom and decide to just leave well enough alone!
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Octo - yes - I did ask for opinions! I don't think you are wrong! At first I didn't even really consider anyone else's opinion other than mine - I actually figured it would be easier on everyone in the house if I either have none or two (reconstructed). Then I started feeling guilty!
Haha! Her dad is in the picture - he is my husband! He is like the silent partner unless sports are on or something is growing in the refrigerator! Don't get me wrong - he has been absolutely wonderful through this whole process. He's gone to all my major appointments and even though he talks too much about nothing when he gets nervous and interrupts my surgeon with trivial stuff - I know he's handling things the best he can. I asked him his opinion and he said he just hates that I have to make a decision like this and that he will support whatever I think is best for me. He was the one that really encouraged me to continue with another LX - he thought the baby steps would be easier if it came down to needing a MX.
I just talked to hubby about getting her counseling and at first he said maybe not right now but later if she needs it. To which I responded - wouldn't it be better to do it now and know for sure it she needs it or not! I'm going to start making calls tomorrow.
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