TRIPLE POSITIVE GROUP
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pbrain - the prism through which you see the world has changed and you now have a no bullshit zone! That is a good thing - too many of us put up with too much crap in the name of being polite, or politically correct, or for whatever reason that no longer matters. I say more power to you! I find myself being kinder to people from whom I have no expectations - I hold doors open, smile at people, give away coupons I am not using at the grocery or department store, but those interactions have no emotional component, so they are easy. I no longer put up with attitude, rudeness, things that bore the pants off me, stupidity, things that waste my time, etc. - those are a bit harder because they often involve interpersonal relationships, lol! I already appreciated life and its precious fragility - I lost my dad and brother to stage IV cancer, and between them my mom to a 25 year long degenerative neurological disease. Being a military wife for 28 years showed me much about loss - I had been to more funerals than my parents had. I didn't feel like I needed character building, but I hope I have taken my experience with breast cancer and used it to be an example of resilience and strength to my children. I hope I have become a better version of myself - more generous, supportive, encouraging and dedicated to the relationships I am fortunate to have.
linda - surgery is Friday morning at 9 - but you are sweet to be thinking about it!
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SpecialK - I am so happy, I am bouncing like Tigger! I can listen to the ceremony and a few days later get the digital download video!! THANK YOU!!
Pbrain - One change for me is my bullshit tolerance meter is now set to zero. No drama.... I was just thinking about this, and like you, do not feel like there has been an epiphany. I have learned to ask for help when I need it, without feeling like I am somehow lacking by having to do so. I also have learned that it is important to put myself first more often than I have in the past. I used to know that, and lost it somewhere across the years.
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Pbrain. So true." Amazing beautiful cruel & exciting place", for sure!....I have been giving a lot of thought to my mother lately. She will be 80 next year, and her life has not been a bed of roses, but alot of her life is also what she made of it, including some bad deciscions. and now she is living with the consequences.... But, sometimes when we talk on the phone, it is like she has tourettes, and i have to put the phone on speaker, so i can walk away... it freaks me out to touch the phone while so much toxin is coming through... eewww... And i did have compassion for her for a number of years. and it is hard to muster any now. and if i try to have a suggestion, or try to help, she acts like she can't hear and says xtremely sharply, "What?" like, with the h in front of the w. like hwat? followed quickly by a sharp NO!.. she is determined to keep being not the mother, so much, but the authority figure. this was a woman who was kind of emotionally unavailable, all my young life, and i disapeared my self for a number of years. eventually, though, i let my family back in a little a time, and now, boy, am i sorry! i just finished reading simone debouvoir, er, however you spell her name, s book about her mother " a very easy death", and it so reminded me of her, and i SO do not want to be a bitter old woman, at the end of my life. So, i was talking with my man about this, and in the very telling of it, i begin to sound like her......eeew... and he brought that to my attention!
i am hoping that Nicky is fine, and that her every whim is being attended to, lovingly and capably, by people who genuinly and deeply love her, be it family or friends. Maybe someone is reading her email for her, and if anyone is trying to pm her, maybe she has it set to show up there. i do hope she is all right.
Do you know, sometimes i wake in the night, and i will think of one woman or another on here, and i will begin to smile softly, out loud, in a room where no one can see me.
it seems very important to me, somehow,to not f-^ too badly, if you know what i mean. love, and missed you all for a whole week!
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pbrain....it actually annoys me when people asked what I learned or how it changed me. Geez Louise, as scary as this is, there are people way worse. And why do I have to learn or change just because I have/had a medical issue. I have a friend that was recently diagnosed with ALS. That is beyond scary to me. My sister-in-law was diagnosed with Ted Kennedy version of brain cancer and died 18 months later, never seeing her children get married or her grandkids. She was the most verbal person I knew. We called her Julia Sugarbaker, as she was just like the Designing Women character. To watch her lose her ability to communicate well was Sad and scary.
I have always been a glass half full optimist, like my dad. I have changed a few of my priorities. I'm not going to save all. my money for old age. Now, I believe it is all about making memories, no matter what happens with this diagnosis or if I get hit by a bus tomorrow, so a trip to Thailand while my daughter was modeling there? Absolutely. Alaska with friends last year? Yep. More family get togethers. Yes.
I have a little bit of both Pbrain and SpecialK. No tolerance with toxic people. I just wrote them out of my life. And, I do think I try to do more for others
Robin....so glad for you! I've been chuckling about the graduation thing. Neither of mine wanted to walk. I told them I paid for that degree and they were walking. Then, my son went to grad school, for a Masters in Finance. He did it with a new one year, highly intensive program that about killed him. When I asked about graduation, he had no clue when or what. Had ignored the emails. When I asked, he only had two days to get everything turned in. Said he thought since he walked once for undergrad, he wouldn't have to do it again. This one was really cool, and he was glad he did it.
Kathiec....my mom is one of the most negative people I know. We are not particularly close as she just never has anything good to say. She's had some challenges, but they are of her own doing and she doesn't seem to get it. We have helped her a lot in the last three years and there were times I wanted to pull my hair out. I think it is sad. And I refuse to become that.
SpecialK...I want my kids to know that I have grit and guts, and don't give up. But, not just because of a cancer diagnosis, but in life and career. I tell my struggling artist daughter everyday that I am proud of her initiative for the life she has chosen (and then tell her she can quit and move home at any time, lol). I built a career with jobs I loved that rarely feel or felt like work. I want them to look at us as examples that they can accomplish that too.
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it is true, fluffqueen, with or without this dX, to shape your life into something you can live with!
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This cancer experience has taught me how to get better at dealing with the unknown, aka not worry quite as much about what will happen since I can't control it anyways. Notice I said "get better"... since I certainly haven't mastered that skill! But I am light years ahead of where I was when first diagnosed. It's also made me think about my life and if I would be satisfied with how I have lived it thus far should my diagnosis at some point be changed to terminal. In my mind - making "peace" with the inevitable death we all face someday - from something - whether it be cancer or whatever else takes us out eventually - has become an important issue I have needed to face rather than live in denial. Making peace with that reality is a difficult work in progress, but again, I am light years ahead in facing that reality and being ok with it. I am a good person person and have lived a good life and made a difference. That is all it really comes down to for me. Namaste.
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Cancer is not a gift. You can do 1 of 2 things with a gift. Re-gift or return. I would never give this to anyone nor do I ever want anyone's cancer to return. (Now I'm playing with words)
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Iago - true! Not a gift but a long ass jungle trek without a map or compass. While cutting through the overgrowth we have a lot of time to think, worry and wonder. It is more of a shove in a different direction for some. Others leave a part of their old self behind, it does change some people. Not always in the most positive way. The PTCD/PTSD minefield may be the place some people end up, while others navigate their way through to a different outcome. Perhaps, even one in which, it all drops away as if never happening. Like a bad dream, or the pains of childbirth.
I am just grateful that this website and all of you were here to great and guide me as I stumbled through the web portal! I hope, as time goes along, I am able to give some of that comfort back to someone else in need.
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Well since I am new to all this - I will tell you that the one thing I have learned from all of you since I have been diagnosed is that NOSE HAIR IS IMPORTANT. I did not know that before
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linda I learned about nose hair when I first moved to Chicago. Yup those things freeze up in the winter Chicago wind. Never had that experience growing up in Boston.
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Wow Lago - I grew up in Cincinnati and never had that happen either - guess the windy city helped with that.
Insurance companies are enough to drive you crazy. I got a sample of MuGard from my Mo's office - a mouth wash - I have only used about 1/3 of it this treatment but I haven't had any mouth sores or other mouth issues so I would like to continue using it with my future treatments - it was the last sample they had. Well - my insurance does not cover it at all. Over $300 a bottle if I want it without coverage. So my MO's tried two others -nope no coverage. Guess all these preventive and heavy duty ones are all too new and not approved in the formulary for my plan yet. Oh well - guess I will try to make this bottle last as long as possible and then decide what my next plan of action is - I know I can get through the next treatment on this bottle -so I will go from there.
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linda shop around. Did you check the prices at Costco, Target and Walmart?
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linda - I think mouth sores usually crop up early after chemo, maybe ration your prescription med, and rinse with the baking soda/salt/water rinse for the remainder of the time. FWIW - other than icing during infusion, I did nothing to prevent mouth sores. I did get them on the first infusion, took care of them with Caphosol, but other than brushing my teeth a lot, I didn't rinse with anything and never got them again.
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no mouth sores here yet either. Just brushing my teeth twice a day and using an alcohol free mouthwash
Funny about nose hairs!! So those will go too huh? Great timing with allergy season right around the corner!!!!! Lol
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Thanks all - I will make this stuff last as long as possible and I will check out those places lago for cost. I think I will reduce the amount that i put in my mouth next treatment too- I have a little mouth anyway and that will extend it. I have been doing rinses and brushing often also and never had any sores but it did get very tender a couple of days and I am not sure if the mugard prevented the sores or not but I also really didn't have any bad taste in my mouth and things have tasted pretty normal - smell funny but taste normal.
I have felt very good today - managed 6 hours at work, walked for 30 minutes, went out to dinner with hubby and plan an evening walk also. Funny how good it feels to actually feel good.
Footballnut - you will not lose your nose hairs - yours will grow to 18 inches long cause of all that walking that you are doing
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robin, I remember childbirth like it was yesterday, lol. All 24 hours of it and then a csection. Should have started with the latter.
I used biotene mouthwash and had no problems, but my sister in law used something called Mary's mouthwash that is blended in a drugstore.
Dance-I will make peace if I have too, but hope it won't be soon.
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also I googled that mugard. Someone wrote you can fill out a form in their website and they will cover what onsurAnce didn't . That was in 2012, but you might check
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thanks fluff - yep saw that on their website - the Mo's office says that program ended - now they have a copay assistance program but only helps if your insurance actually covers part of it - even it is one penny lol . If your insurance doesn't cover it at all - they currently aren't offering anything. No biggie - I got time and if I really need something I will figure it out.
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Linda, you made me laugh out loud! I will put that in my giant learnings category because I really missed my nose hairs. I did chemo in the dead of winter, so I never inhaled a bug, but my nose ran and bled and just was an annoying appendage for months and months.
I too used the Mary's Magic Mouthwash (as a Catholic, I called it Mary, Mother of God's Miraculous Mouthwash), but mouth sores were never my problem. Like I said, I chewed ice during the taxol infusion and was fine.
Thanks everyone for your thoughtful posts on how this has changed you. I'm glad to see no one was radically changed, since I don't feel like I was either. But I do think over time, I'll adjust my outlook on life as this all sinks in.
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I had a mouth sore after my 1st chemo. Sucked on ice chips through every taxotere after that and never had an issue. I too used Biotene mouthwash 1x a day on chemo.
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linda - here is a link for Magic Mouthwash formulations - it may be cheaper to have your MO write a prescription for one of these and have a compounding pharmacy make it up if your insurance won't cover the Mugard.
http://www.drotterholt.com/magicmouthwash.html
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U gals are all s amazing I was reading everything that everyone was posting about life changes and everyone had so much to say and it was all so positive. Isn't that wonderful Not from this disease it's not, Imean this disease sucks big time--but it has affected so many in so many ways. It really hasn't changed me except I think I pay more attention to life itself, other that that I'm the same sarcastic bi*ch that I always was and I never bothered with people that I really didn't care for. (see, always mean)and I have all the same friends because I've always loved them and they put up with me, but I did make new friends so that was always aplus, u can't have to many. But I love the way u all explained in such deail what is different about u. And it's all good, but I'm sure u were always good and kind u just forgot cuz u were so busy.
SpecialK (((HUGS))) for Friday
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camillegal - thanks!!
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camillegal I really want to meet you! ♥
SpecialK Not sure if I will have a chance later on so I want to wish you the best for tomorrow. Happy healing vibes too.
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lago - thanks, I appreciate it!
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In case I miss you later SpecialK- sending all my positive vibes your way!!
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linda - thanks!
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Special K - sending healing thoughts and positive energy your way for tomorrow!
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dance - thanks!
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SpecialK - add my thoughts and healing wishes to the list. More can't hurt, right?!?!
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