Calling all TNs
Comments
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Linda: I am so very sorry for your loss. There are no words I can say that will help. I've not suffered the loss of a child, but there have been times when mine had something very wrong with them, and there've been times when I couldn't locate them... and that was a feeling I'd rather never face again. I'm opposite from where you are... my mother died tragically and suddenly in a head on collision May 10th, 5 years ago. It's had a lifelong effect on me and my children, who were extremely close to her. Mother's Day for us has been tainted too and we have good days and bad days still. I do have a daughter who is BRCA+ like myself and we've recently started all the testing for her. I really try to forget Mother's Day... and almost did this year.
On another note, my onc doesn't do scans. I know bunches of us here haven't had any scans. Mine won't do them unless there is good reason because of all the stuff that shows which isn't anything to worry about. I believe some of the reason is because of insurance, and some is legit because they don't want unnecessary worry/testing. I pray a lot!
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Linda, my heart goes out to you. I also wonder about the scans. I had a 2,5 cm tumor seen by mri and my doc ordered all the scans. My insurance denied a pet/ct scan. Thank goodness my docs pushed for it and they found internal mammary nodes positiev, but no underarm nodes positive, so it did make a difference on treatment for me. The mammry nodes did show up on mri, but the pet confirmed. It's scay, but I would rather know so I can fight it appropriately. My first time around 8 years ago I only got a chest xray and bone scan before I statred treatment, and no scans at all other than breast mir' after that. I am thankful that worked out that time (this is a new primary I'm dealing with).
I aslo wish I would have been more poractive or given the choice of bmx. but I was so scared and just kinda followed what the docs said. This time I searched out my docs and got 2 opinions, and tested for the brca, which I am positive.
Again, Linda, my heart goes out to you. I hope you and your granddaughter can find some peace and comfort this weekend and have an enjoyable day.
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I didn't have any scans either..I did have blood work and a chest x-ray prior to surgery and treatment....but I have been told to watch myself diligently..which I do..and Lisa did also...she knew something wasn't right..would it have made a difference with Lisa..I don't know...you just never know with this crap.
I don't get too excited over Mother's Day either...I tell my kids not to spend their $$ on me..just a phone call to tell me that they love me is good enough for me... I still do dishes and laundry on Mom's day anyway.I really not one to sit down and relax either
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Thank you, all for your kind thoughts.
Angelisa - I am so sorry for all you have been through as well. How horrible to lose your mother in a head on collision. Gives me chills just thinking about it. I can well understand how your Mother's Day every year is tainted, as I imagine mine will always be as well. I am fortunate to still have my Mom and thank God every day for that. My other daughter lives in Minnesota so I will not be seeing her this Mother's Day. She has been here with me and the family alot since her sister's death, so I will miss not having her here tomorrow. I am so thankful that my small family is as wonderful as they all are, and at least we will have each other to lean on.
My onc does not do scans after treatment either unless I feel I need one or present with any "2 week or longer" type symptom. Personally, I would run from any scans at this point - unless I absolutely had to have one. The different oncs I checked with prior to choosing the onc I did upon diagnose here in my area - all insist on preliminary scans at diagnose, that's why I was surprised that Lisa didn't have any, especially being triple neg. My insurance wouldn't pay for the MRI or PET either, but they did pay for the breast MRI, bone scan and full body CT scan. While I certainly didn't want the extra anxiety at the onset of waiting for the scan results, I did have the assurance that nothing else was found, as it oftentimes is. Of course, that still offers no guarantees with this rotten disease - it just seems to do what it wants while following no rules. If stress is truly a factor in our disease recurring - I'm as done as a Christmas turkey! I see my onc in early June again for my next 3 month - I'm almost afraid to go!
It's just so heartbreaking to hear about what Lisa and her family are going through. I pray for strength for them all.
Linda
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Linda, I am sorry to hear your news. As hard as it's been to go through this myself. . .I've often thought at least it's me and not one of my kids. . .and you have had both. Hugs to you and your granddaughter. As far as stress goes, I've read that stress does not cause recurrence. Otherwise we would all recurr. . perhaps it's how we deal with the stress.
Teka: I remember that post and it is indeed chilling. Why didn't they listen to her?
My surgeon is scan crazy and has ordered just about every scan I can think of, but I guess now I am glad of it.
I just looked at the thread called "Middle-Aged Women 40 to 60ish and it sounds like they are saying goodbye to Lisa. And I cannot stop crying.
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LRM- I can not imagine the pain you are experiencing....
WRT scans, I went to MSK and never heard word one about having pre-treatment scans. Ironically, I've had several (no PET) for several big scares afterwards but... so far, so good.
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Haven't been on for a few very busy days and I am so saddened hearing the news about PauldingMom. I am really amazed by the varying practices world wide in regards to breast cancer and especially TNBC. My dr's don't do follow up scans unless there is a reason but when I found my B9 lump, they got me in pronto and took it very seriously. I think we all have to be very self aware and proactive with our care and if we think something is wrong, to know enough to ask questions and to speak up and to change dr's if necessary. Gone are the days where I no longer listen to my intuition. It's unfortunate that there are still dr's out there who are so incompetant. My heart goes out to her family as well.
Linda: I am so sorry for your loss! I have lost many family members: mother, father, brothers, pets, but I never had children so I cannot imagine how you feel. I am so glad you have her lovely daughter to remember her with but also to help you through this difficult time. Big hugs.
Angelisa: It is most difficult when we lose someone to a tragic and senseless accident. I hope with time your pain and feeling of loss will one day be only fond and happy memories of the good times you shared with her. Big hugs to you, too.
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..................and now I see that "Justpayton" is not doing so good too.............I just hate this disease......................
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Excuse me, but
FUCK!
FUCK! FUCK!Did I mention *FUCK* ?
Ladies, I can't take too much more of this. TNs are dropping like flies in here.
edited to add: no apologies (this time) for the expletives I HATE this disease!
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such sad news right before Mother's Day. I hate to see my fellow TNs recur, it seems to happen so disproportionately often to us. Any time I look at the Stage IV board it's always a TN who has fallen.
And Linda, I am so sorry to hear about your daughter, my sympathies to you and your family. I did the Komen walk here in Atlanta today. My oldest son (11) at the last minute decided to join me, and we had a good time walking and talking together. We almost never talk about my cancer, but during our walk he did open up and ask a lot of questions - particularly dealing with finding a cure. One of our acquaintances had his pancreatic cancer recur and he told me he had heard he would die. I had to be honest and tell him yes, and they'd been working forever trying to find a cure for cancer, but that there was no success yet. He said, "wouldn't it be awesome if the $30 we donated for me to run was the money that got them to finally find it"? Yes, it would, my sweet boy.
He did great, and this mom is proud of him.
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Minxie: You have an amazing boy! Hugs and happy mother's day.
Man, Heidi, you are correct, it seems mostly it is TN's that fall. I do think finding it early and having the best care out there really ups our odds and I feel as if Pauldingmom's dr's failed her. I hadn't heard about justpayton. Not a good day for us.
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As I sit here and read all the posts my eyes are just filling up. I don't have any words that will make a difference to Linda or Pauldingmom. I will keep you all in my prayers along with everyone else from the this board. I hate that we are even having to talk about this and people are so sick from this and that we have to cry over any of this. My life seems to be an absolute wreck , mentally and finacially from this.... I have been having a terrible week and when I here things like this I cannot even hold it together. When I was diagnosed last year I never had a chance to even think about anything..... it all happend so fast.... this week I have been at so many appointments for ooph, TE's , Port removal and I am having terrible anxiety attacks. I am so tired of being tired, partially bald, boobless etc... I really hope everyone has a good weekend and I hope my complaining is not to . Thank you for always being here.
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I say FUCK FUCK FUCK WITH YOU !!!!!!! and there is no need to apologize....
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I say we have a group scream of "FUCK FUCK FUCK" to this hideous disease. And thank you all for helping to hold me up with your understanding and kind compassionate words. Knowing you are all always there makes such a difference.
Edited to add that Samantha (JustPayton) has a page online at carepages.com. She is another strong wonderful sister that's getting the shit end of the stick as well with this triple negative beast. They sure aren't kidding when they tell us the first three years are the most dangerous. How long is this crap going to go on for us until they finally find something we can at least fight with if it comes back - or better yet, knock it out as we head out of the gate.
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Kymn,
I felt better this treatment cycle than last - I just did round 4 of ACT - last time I had nausea lasting at least 7 days. This time I have taken Zofran every 8 hrs for the first 5 days then about twice daily - took one today along with a phenergan last night. That is along with taking oxycodone as needed for Neulasta bone pain - the oxycodone makes me nauseous, too, so I've done pretty well by keeping up with the Zofran. I'm not quite as weak as the last time, either - the last time my counts got really low so I'm hoping that this time they have stayed up. I won't know until Monday.
So maybe your fourth treatment won't be so bad. Hang in there!
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Ladies, on a more positive note... let's not forget all those who go on to live without recurrence! It's so very hard to remember this, but there are thousands of TN's who never recurr. Thousands of moms get to raise their kids and see their grandkids raised... thousands of sisters live complete lives and die of something else... this board sees the recurence people more because of what it is: a breast cancer board. Those who have surgery and get past treatment often stop coming here to get on with their lives. Those of us who decide to stay must get used to the fact that we will see familiar names come back and some of those (you or me even) may have devastating news. I think that's why a lot of people stop coming here... it's depressing and makes us remember.
I just keep everyone in my prayers... that's all I know to do. And ask the same.
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Can I second what Heidi, Tracie, and Linda have said . . .it's hard to be positive when you see these young women in the prime of life going through this, and leaving behind young children. I feel like we are on the Titanic . . . .and there are not enough lifeboats. We need something, like Herceptin, to at least give those that progress more time. . ..
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cc4npg- you are right, of course. But I am beginning to think it may be time for me to get off these boards also. I rebound pretty good, but lately I find myself thinking... if I weren't in here I wouldn't have to rebound. I think a little bit of survivor guilt factors in for me also. Today I had a lovely day, and I still couldn't stop thinking about those in here whose lovely days are numbered or gone completely.
Now I know how an ostrich might feel...
On a lighter note... tomorrow I drag my two sons off for a carriage ride in a local state forest. They don't dare say no on Mother's Day! Crafty, I know.
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Teka: Any time. I don't have siblings so I have learned to give myself some talks when it would have probably been an older sibling. As a child, I never had anything to blame my wrongdoings on.. no pets and no siblings. lol
Heidi: I feel that same guilt sometimes. But we must go on and "live" our lives. I've wondered how long I may stay on the forum too. I want to be there for those just being dx, but then again, I want to try to get past this and put it behind me. Not that it will ever be behind me. I don't think that's entirely possible because of the lasting effects. I think taking a break from the forum would do a lot of us good! I don't post as often now because I'm just not on here as much... and that's a GOOD thing!
I am getting back into working with flowers/trees and animals! I'm also heavily involved with a computer business. But I really want to get some perennials planted this year. I've been here 5 years and haven't had a chance to do anything. Mom died, which is why I moved, to take care of grandma. Then one grandma died the next year, and the other one followed suit the year after that... then our family dog (16) died... then I became sick and the cancer dx. So I'm taking back my life this year!
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cc4npg- I think part of my "problem" is that I was diagnosed one year after my husband retired and we finally had 24/7 together (he was away alot). Before that I kept myself busy with horses and kids but now, we have a lot of "down" time... "retired" time.
With the weather finally getting nice we will be out sailing and carriage driving much more, but the winter is much slower and I have much more time to reflect.
Aging is also a factor. At 56 I just don't have as much get up and go to... well, get up and go! So I veg more often, and that includes computer stuff. I will soon be getting more busy with my naturalist teaching. That is somewhat seasonal also, more spring and fall. Hubby does most of the yardwork now, and that is a BIG part of the workload around here that use to fall 100% on me... and I'm glad to be out from under it.
Never suffered "SAD" before, but I think I did this winter. Not sure if that is a reflection of being post cancer tx or just part of getting older.
Oh well, enough rambling.
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Teka-- wow, such similar thoughts! But why Nov 1 until Jan 2? Just curious...0
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Thank you Teka for the kind words.
Heidi: I think you suffered from SAD too. I remember you being down a lot over the winter, and if I recall, I commented how winter has always made me more down. I highly dislike winter! I could do without it completely!! I'm only 44 and I do the outdoor work here. Acreage, but no livestock.. just wild critters. I'm sure the horses take a lot of time... I used to want horses, but the work involved... dunno if I could do that.
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I sent Justpayton (Sam) a text today..haven't heard from her..I'm scared...
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truly don't know what to say, ladies. Too much sadness, my heart goes out too all.
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Paulding mom passed at 12:05 this morning. Yep, Mother's Day.
I may take a break from here for awhile.
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My heart is so sad this morning...
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Thank you Heidi for letting us know. I just got on the computer and hadn't yet checked Tina's FB page. My God, I am just so sorry. May God be with them all.
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I want to express my sincere condolences for everyone who has suffered losses, this is so hard.
I think I will be taking a break myself, as it gets hard being such high risk and seeing women fall who were not. I hope I will be able to come back and offer both support and encouragement for other women in my shoes down the road, but right now I seem to be on a solitary path.
I wish everyone a happy Mothers Day, and I'll check in definitely. Just maybe every week or so.0 -
I am sitting here, tears streaming down my face, fear in my soul. But I have to hold on to hope. I have been so sick this past week with SE, there were moments when I didnt want to wake up.I cant believe that now after reading all of this shame on me for not finding a way to fight this damn depression, hold on to thoughs of tomorrow. For all of you feeling you need a break I just want to say THANK YOU, thank you for your support you advice your wisdom I really dont know how I would have made it this far without you. I totally understand why you need to break away and live. Maybe in a couple of years when this is all behind me, after I have given back what you wonderful ladies have I too will feel its time to carry on. Love N Hugs to you all
Kymn
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Kymn, I know it's tough right now but hang in there...you will begin to feel better soon when the treatment is beind you. (((((hugs)))))))
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