2012 sisters
Comments
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ha! With everything else we get why not the hell have to worry about frozen fboobs too:)
Hey I can't locate that post liefie mention? Can someone send me link? -
Hi ladies. I love the gratitude lists being posted. (that's what my 12 step program would call it). Someone, I think Ann, mentioned wanting a cure for fear....in my experience (kinda like the game Rock, Paper, Scissors) FAITH CUTS FEAR. When I've got it and I'm feeling centered I can get through "it"... Whatever the it for that day is.
Not to say this Faith removes my ANGER at this fucking nasty disease that liefie so eloquently described. This is a journey/experience I'd have been happy to miss, but I am starting to find opportunities being put before me to pay it forward. I've had people approach me asking questions because they have a mother in the same place, but fearful of opting for the chemo. (I have directed them to this forum actually) and given them my phone number. Maybe I can hold someone else's hand while they figure out what is the right road to take as she navigates her way through this.
Ok I gotta go make food and drinks to have on Thursday post chemo treatment.
xxoo -
Mc, if the TEs freeze, um, it would be too late for you! Your internal body temp would be, um, low! LOL. And I lived in Red wing, MN is cold, now I live in balmy WI! LOL!
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I had been sleeping pretty well for the last couple of months, but last night was an exception. Woke up about 3, still awake at 4 and at 5... so I got up, put supper in the crock pot.
Decided to take a bath to loosen up my sore back. Woke up in a very chilly bath about 7. Now I'm sitting here at work wishing I still did caffeine. Can someone drink a coke for me?
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There's a strange feeling that comes with all of this cancer business. In my case, I blame myself because I ignored the tiny pea that I felt in January. My laser was focused on the moment and I always had something more important to do that usually led me to forget to call the doc until I thought of it again before I went off to bed. So when I went to the doctor and people kept telling me that the tumor was large (4 cm), I couldn't help but read into that a quiet "You waited too long, stupid."
I am a big girl: fat. obese. Now I hate to go into a doctors office because I think the judgment is going to be there that not only was I stupid, but I'm fat and stupid. No wonder you have cancer, and you want us to help you? Loose 100 lbs, honey, and then we can help you.
At the office there is support, but I can't help but notice a change since I told my boss that it was Stage IV. I get the feeling he's convinced I'll be dead in a year and he has to plan for the future. Again, it's the shift from the "You can beat this baby!" to "Oh, you mean it's terminal?" Pink ribbon to black death--not warm and fuzzy enough.
I fired my oncologist because I didn't trust her and now I'm wondering if I'm just stupid all the way around and no matter what I do it's all for naught and my fault. I know that this is stinkin' thinkin' (as my mom calls it) but Ijust feel overhwhelmed today. My axillary lymph nodes are swelling again and I've already seen my surgeon about this a month ago and he didn't see anything on the ultrasound, so I don't want to go again because it looks like I'm whining about nothing.
[The reason I do not trust the oncologist is that the consult she provided to all of my physicians included pro forma notes on a full physical exam that she never did. And I thought that cutting that much of a corner and sending a dishonest report was unethical and I would never be able to fully trust her recommendations. ]
I hate this bullshit.
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Juneaubugg, thanks for that tip about FAITH vs FEAR.
(((Scorchy))) be gentle with yourself. You made the best decision you could with what you knew at the time.
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Scorchy, I'm a big girl too and understand the self blame and the feeling that people are judging. But all we can do is what we can do today. I'm working on losing some of the weight and trying to avoid those things that we believe to be unhealthy but it's all just guessing. We know that there are correlations between cancer and x y & z but we really don't know the cause of anything. I keep thinking of all those people who drank milk and ate bland food trying to cure ulcers that were caused by H. pylori... All we can do is leave past choices behind us and hope to find the right path for the future.
I hope they find your "silver bullet" and you can get back on the road to feeling your best.
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Scorchy--I'm sorry you are so frustrated. You are absolutely right to fire your oncologist and screw the surgeon--go back if you believe something is wrong. Don't worry about someone thinking you are whining you don't believe that do you?? Of course not! I have all those horrible days that everyone has, then I move forward when I'm ready. My husband thinks my oncologist is fine. I think she sucks for some of the things she said to me and other things that she did not and should have said to me. I'm currently looking for a new one. I fired my PCP because he interfered with my getting my initial path report and I wrote him a letter telling him I hope he never does it to another woman. What I have learned in these weeks is that I'm the one in charge and as much as I wish making these decisions was easy, it's not. Everything is a crap shoot and a percentage. I'm educated, I have three degrees and I can research just about anything on the net AND, I'm sick to death of EVERYONE telling me that I shouldn't be doing so much research. REALLY!?!? I have mastered a withering look as I tell anyone who crosses me, how the hell am I supposed to know the questions to ask if I don't research it and find out my options. Everyone wants to leave the final decisions up to me, but they don't give me all the options and you know what they all say....well, not everyone wants all the information. REALLY??? Why the fuck don't you ask me if I want the info. After emphasizing 3 times how concerned I was about the heart issues (problem on my maternal side of the family), my RO told me they would put a block on the machine to protect my heart--so I asked if they used the prone method of radiation. He immediately looked suspicious and said, "Who told you about that." I told him no one and that I had researched all the options of radiation. Long story short, I am getting prone radiation. There are nights when I am up at 4am crying, so frustrated at the lack of info and frustrated that I have to work so hard to make the best decisions for me and that no one helps. I asked my surgeon if she ever looks at the bc forums and she said no. I told her that it might really help if her support staff did so they could understand the questions and frustrations we go through. I pointed out that as women we are taught to put a smile on and say everything is okay because no one wants to hear what we really feel. So, now that I have ranted and vented, Scorchy, I really hope that you can forge ahead, screw the weight issue, screw not getting into the doctor earlier..deal with what is there and don't let anyone make you feel bad. Easier said than done, but try (then go home and have a good cry). Personally I think the emotional aspect is the dirty little secret of breast cancer.
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Right on Junif.....what you said.
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Scorch, I'm with Junif on this. Screw the doubt, guilt, and self-flagellation that come with this diagnosis! I think it's natural to go through it and I also think it's natural to finally get pissed off at it and say, "fuck that." the med info system is always telling us how most lumps in the breast are benign, about 80%. So when it takes us a while to get our asses in there and we're surprised it's not benign, well, that's kind of effed up because for us, lumps are 100% malignant.
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I am resonating with the latest posts and Junif I am all about research and best options and even though I keep getting told that British Columbia is one of the best places to be now that I have BC, I don't disagree, but yes there are many ways to approach each step and I want to know them. I just called the Rapid Access Breast Clinic to see if my surgical path results have come back since it is business day 7 and I was told it normally takes 7-10 business days. My surgeon did warn me that pathology here is not so fast as possibly places in the US; only so much money to throw at this and original diagnosis was fast. Thanks for that but now I am stressed waiting. So I got told that they make the appt. to see the surgeon for past the 10 business days in hopes it will be back - next Monday is that appt. but then I was told that if it comes in sooner they can send it to my GP and I can get it from her. I said I have one of the most useless GP's in the world and that would only take more time. I got my original biopsy path results at the clinic so why not these? She sadi she will call me when they come in. I wonder!
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Junif, I've also wondered if oncologists ever read these forums, because I think it will be such a good resource as well as eye-opener for them. What better feedback can they possibly get than this? Good for you for telling yours to do so. Don't know about you guys, but I tend to downplay issues when I'm with the doctor, and don't want to come across as a whiner or crybaby. (Yes, I know it's stupid.) Here they will see the raw angst, and frustrations, get wise about patients' needs, and how to really approach their patients. Maybe one of the criteria for becoming an onc should be that they themselves must be cancer survivors - just joking, but sometimes I do think that.
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ok.. dont shoot the messager...but
In my opinion.. we need fear, juneaubugg...
its what makes us jump out of the way..when a car is coming..
its what makes us cross the street at night, when we "sense" something "off" about the person coming down the street ...
I wouldnt want to cure fear.. but i maybe a cure for the anxiety that goes with it would be nice.
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Mcook,
Go to BreastCancer.org 'Active topics'. There are 11 pages of topics, and at this moment the topic 'My wife and the battle we did not want to fight' is on page 6. The topics move to different pages all the time, so scroll through the pages if it is not on p. 6 any more. Hope that helps.
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Hi ,
I was just diagnosed for sure today and I'll have a mastectomy in about 2 weeks. I have DCIS ( grade 1 and grade 3 ) in several areas on my right breast. I'd like to hear what it is like to have a mastectomy on just one side since I don't plan on having any reconstruction done. I'm 69 now and I'd rather have less surgery than more. I'm not sure what to expect although I have been reading a lot these last 2 weeks. Jen 25
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Celine- Well said
Mrs. Cich- I yelled at both of my teens this week because Sunday was my birthday and I was starting rads on Monday and they didn't seem to care. My 15 year old forgot that I was starting rads and that really set me off! My 13 year old was in a crappy mood and treated me badly all day on my birthday. I felt that I've had a crappy year and deserved to be treated like a princess on my birthday. On top of it I yelled at my husband because he had used the cream I bought for radiation on a dry spot on his ear! (He only used a little bit but it was bought special just for rads!) My emotions were out of control because I had anxiety about starting rads and no one seemed to get it! My whole family has been a lot nicer to me so far this week so maybe they got it!
2 Fried- Thanks for a different perspective as a daughter. Sometimes I think I am way to hard on my kids and expect them to understand something I don't even understand myself.
Tazzy- So glad you got a date to start rads. I always feel better when I'm moving forward.
Liefie- Thanks for all your positive input.
Cottontail- Yeah for small victories!
As for me, day 2 of rads is done!
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Junif, I so am like you with all the research. With all the decisions thown at us from the start, I felt that I was my best advocate but I so hate people saying "stay off the computer, sometimes too much information is not a good thing". I have never heard of a disease where the patient often has to make such major decisions and in a relatively short time. And all these stats thrown at us but often based on such small pools of people (like the Oncotype test...600+ people, that's all!), research is my comfort I guess in having all these discussions with Dr's and decsions to be made.
Scorchy, don't blame yourself and don't let anyone guilt you into anything and don't settle for any Dr. that does not give you a feeling of trust and confidence. Dr's are not Gods but they should always have your best interest at heart and you should feel comfortable with them. This all is easier said than done and we have enough anguish as it is and should not have to put up with all this extra bullcrap. Woulda, Coulda, Shoulda might mean more if they really knew the actual cause and cure. In the meantime we are left guessing what to eat, what to drink, what supplements to take, how much to exercise etc.
I am so glad we have each other...no one else gets it like we, who are walking the walk. Rant done..
"Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand" ~Emily Kimbrough
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I think oncs and PAs should at least read the active list every week, just to know what is the hot topic of the week, there is always something. LOL. Research is good, believing everything on Dr Google is not. Gotta use your own brain too. Much love
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2FE, thank you. I know my kids don't get it but I do feel they should be a little more understanding...even though I don't even understand it. You're story put it into perspective.
Thank you all for everything.
In off to pout because we just found out we have a busted pipe under our house. Aargh!!!!!! -
Jen25, so sorry you got the bad news. This thread is pretty busy and I haven't had surgery yet, but just wanted to say Hi and suggest you try also posting in the Surgery forum for your questions. There were some topics there about going without reconstruction. I also started a couple topics about choosing bilateral mastectomy versus one side and got a lot of perspectives. I will most likely choose one side mastectomy with no recon too.
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Thanks all for the talk about the silver linings today. Good food for thought. Been having a very glum day. This should be my good week between treatments, but I don't feel good. Can't gather up energy to work and fighting off this cold my little guys shared with me. Was supposed to go out to a nice anniversary dinner with my hubby tonight, but just didn't feel up to it so kept it simple. Spent a lot of time today having a little pity party for myself, as this is not at all where I pictured myself on my 7th wedding anniversary. Too tired to do my job, too cranky to be the mommy I want to be, and too busy with bc issues to be the wife I want to be. But... if I put my mind to it - I can find things to be thankful for. I am alive and present for my 7th wedding anniversary. I have a wonderful husband who has been by my side for every minute of this awful journey. I have two wonderful, adorable little boys who - when it comes down to it - thankfully won't remember this at all and aren't old enough to have the same fears and worries they would if they were older during this journey. I have a tremendous support network ready to help me at a moments notice - as evidenced by a cousin who immediately came to my rescue to drive me to my Look Good Feel Better class when I decided I was too tired to do the drive by myself. I am fortunate to have a good job that I like, with the flexibility to work from home and thankfully take off more paid days this year than I am really allowed to. Slowly but surely, I am learning to let go of some control in my life and trust others to do things without me directing them on now it should be done. Slowly but surely, I am learning to ask people for help, and accept it without feeling weak. And - I have found all of you who understand this journey and are willing to listen to me when I need to be truly heard. Next up is to learn to live in the moment more and take more time for me. Going to set those challenges for myself.
To each and every one of you. You are brave, strong, wise and beautiful - and I love you all. Sending giant hugs your way and wishing you a peacful, sleep-filled evening.
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Now I have a rash where the tape sticks to hold gauze to my infected drain site! This just keeps getting better and better!
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Ramols- sending you lots of virtual hugs and well said! Screw BC and let's not let it take our happiness too!
cottontail-yep the gift that keeps on giving
hopefully rash gets better!
Mrscich- ugh! Of course we don't get a break with pipes etc! Sorry
Aruba- I love that quote!
Tazzy - finally a schedule! Happy for you
Liefie- thanks for help on finding post
Omg so many of us! And sorry I did not respond to all by name but agree with everyone else love you all! -
Mrscich,
I say i had cancer but am currently cancer free. I feel like a total hypocrite, by saying that because i did not need any treatments of any kind. I am currentlyon Letrazole forr the next 5 yrs as preventative. -
liefie, I scrolled twice through (Go to BreastCancer.org 'Active topics'. There are 11 pages of topics, and at this moment the topic 'My wife and the battle we did not want to fight' is on page 6. The topics move to different pages all the time, so scroll through the pages if it is not on p. 6 any more. Hope that helps.) but could not find it. Any chance of sending the link?
Thanks, Marian
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Celine flower. I agree, but some faith is needed to move your feat forward, when you brain screms no. Not everything we fear is bad for us,
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marianelizabeth, try this link http://community.breastcancer.org/forum/5/topic/793103?page=1#post_3206975
(((ramols))) thanks for the post, your words cheered me up again! It's been a crazy day of ups and downs for me.
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good morning!
I have been awake since 4 am with tummy issues and hoping this is just a bug! I took my temp and it was a little higher than normal:( I am supposed to go to des Moines tonight to an event put on by a group called above and beyond cancer! I hope I start feeling better and hope this is just a bug or something I ate but everything scares me now. I am four weeks today out of surgery and had my second fill yesterday. I can't tell for sure but there looked to be some blood in my stool? Sorry to be graphic here but I am not sure if I should call doc or I am worrying over nothing. Go figure the day I have big plans boo! -
Mcook, you are 10 days ahead of me for DMX. I had mine Aug 31. I'm 3 weeks post op this Friday. I haven't gotten a fill yet, due to two blisters where my steri strips were. I'm hoping to get the fill tomorrow but we will see.
My BM's are just starting to get regular (with the help of stool softeners) since the surgery. -
Good morning
Jen25 - welcome. I have had a mastectomy on one side, no reconstruction yet, as time goes on here contemplating staying that way. I was fitted with an excellent prosthesis and bra and you really can't tell even in t shirts that one is a foobie. Once dressed for the day I totally forget about it, it's that comfortable and my husband is fine with it the way it is, just wants me healthy.
2Fried - I loved your post from a teenagers perspective. My father was diagnosed and died of colon cancer the year I was 14, I relate to so much of what you said about your feelings.
McCook - call the doc ((())), hope it turns out to be nothing but better safe than sorry
Celine - I think that I have a healthy respect for some of the things you mentioned but I do think that fear is different, it is the thing that can keep us up at night worrying, it can keep us from getting things checked out when we know we should and it robs us of peace and being 'in the moment'. Faith then is what tells us that we can do this and helps us take any required action and helps us to a place of peace.
Juneau - thinking of you as you prepare for tomorrow
Ramols - hope today is better for you, I've also had a couple of days of no energy. My oncologist suggested viewing my days as green, yellow or red and even using terms like this with my family so they can understand better my energy levels. I like that analogy, it also helps me give permission to myself to pull back a little and accept the red days.
Take care, everyone. Off for coffee with a great friend and the a three hour class related to my work.
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