January 2014 Surgery Sisters
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Thanks eve. When I was diagnosed with ADH at first, I researched DCIS just in case they found it in the lumpectomy I would be prepared for the consultation w my bs. My husband would say, why are you looking at that? You are going to set yourself up to get it! I'm line it doesn't work like that ! Just because I'm reading research about something doesn't mean that will cause it!!!! I need to be prepared. The doctors talk to you like u know what they're saying, I needed to educate myself on something I knew very little about. This whole thing- cancer is stressful and ambiguous. We have all been diagnosed w cancer; but different cancers, different stages and grades, different treatments, different prognosis, we all have differing levels of strength and find our strength in different ways. How easy would it be if anyone was diagnosed w cancer and then each doctor took out the form that says ok this is how ALL doctors handle cancer and you will ALL be cured to never return!!!! My bs and social worker keep telling me that they are working on a new panel to do genetic testing this summer, one day they will be so much farther with cancer diagnosis and treatments and we will know what triggers cancers to grow and any environmental factors will be handled and there will be less cases. I have three girls; 10, 7 and 4! I worry for them!!! Cancer has been in my family for at least 3 generations, possibly more!!! I don't want my girls to have to deal with this life changing disease or even the threat of it!!!!! I keep telling myself that once I have my exchange on June 2 and hysterectomy July 1 ( as long as they find no surprises during hystetectomy) that I have to find it in myself to say ok, right now I am cancer free, I know a few things I can do in my daily life to possibly lower my chances of a new cancer, it's time to live my life and not in fear !!!! I hope I can get there. I hope I can kind of put this in the back of my mind and enjoy time with my kids without having to think about what could possibly be happening in my body.
I know part of that for me is going to be limiting my time on bco and the computer in general. I spend too much time thinking about, talking about and worrying about cancer.
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Wow. Eve. I don't even know what to say (((hugs)))!
We are all so much wiser now after all we've been through and are still going through. Man, we've got some awesome collective wisdom on this thread! Hopefully these posts will help other women out there struggling with the same or similar issues.
EDITED: Ok, I have to back peddle a bit and say, I'm not totally angry at the whole medical profession...just had a bad experience with one BS, but at the same time I know in my heart he thought he was doing all he could to help me. On the other hand, I love my new team! (I'm not schizo, really!). And I'd also like to share some good news from my clinic that might provide hope for us all one day:
http://www.mayoclinic.org/giving-to-mayo-clinic/yo...
Ok, off topic .... Eve, I tried seasoning my cast iron skillets and I couldn't bring myself to leave them in the oven the whole time. It was just too smoky, so I ended up with some small blotches on the bottoms but it doesn't seem to affect the cooking. I made a super fantastic dish with red and orange peppers, mushrooms, onions and quiona. I kind of made up the recipe. I just found out I LOVE cooking with cast iron! The flavor can't be beat. You get a nice glaze on the veggies and a nice hot surface...so glad I dug them out of the closet!!
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Beverly, I get what your DH is saying about inviting in the bad...but not in this case. None of us did the happy breast cancer dance!
I believe in Karma...but I also believe when we get sick...it is not a result of our bad karma. I realize that my DH gets tired of me saying that I am not feeling well...ya da yada. But when he calls ME on his way home from work I get tired of him ...going Yah..I had a hard day....so it's a matter of ignoring some of our stuff....and letting it go with out a comment.
My mantra is....it isn't about what you are doing, its about who you are while you are doing it.
I have seen you grow so much while you have been posting here. I hope you don't leave BCO because you have so much to offer.
again I understand the need to leave BC behind...but we all are doing that....Leaving BCO means we no longer get to benefit from the wisdom you have gained....
Mary, no worries....I just want you all to know that YOU have to go into this being the one who has the power, not the docs.
Again I envy you those pans. We had a bunch of unmatched stuff that had the Teflon coating that was coming off. yuk! I now have thrown all of that out and thoroughly enjoy my set of Wolfgang Puck stainless steel pots and pans and Yes cooking has become a joy again.
For those of you who do the smoothie thing...I don't think this is an original idea....but...I buy most everything in bulk at Sams Club.
My huge mix of baby kale, spinach and chard was going to turn pretty soon. So I put it in the Ninja with some water and pulverized it...then I poured it into ice cube trays and froze it. Same thing with 10 kiwis.
I really need to get a blog space...lol
love you guys
Eve
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just for fun
my pup with her buddy nemo
mother's day flowers from my son in japan
my kitty doing what he does best0 -
Eve,
I found a sisterhood here. It's going to be hard to limit myself, but I feel I need to consciously limit how much time I spend browsing and/or posting. I find comfort here from you ladies allowing me to freely talk about how I'm feeling etc without judgement. Thank you so much for that!!! I am forever a January sister, I just need to kind of find myself outside of the bc realm again. I really have a difficult time NOT checking in, so I'll still be around... Just not as often-perhaps
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Beverly,
I hope you will keep us posted of your exchange coming up next week. It's only 5 days away - how exciting! And please be sure to check in and let us know how your surgery turns out.
Mary
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Mary,
I certainly will post after my surgery! Take care everyone!!!! We will talk again soon
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Well its late and I'm tired, have to work in the morning blah, blah, blah... But I wanted to let you know that I've been reading your posts and am smiling. This is a great group of ladies. I love all the comments, pictures, and our frank discussions. We're all so strong in our own ways. Thank you for being "you". I wish I could snap my fingers and get us all together for lunch, coffee, ninja smoothies.. Or whatever. Love to you all and blessings, Marissa
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a big ditto to that wish
Can we wear our tiaras?
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Eve, that is horrible! I have no idea what you went through and how it affects everything in your life today. Keep on researching. I think it's a good thing and if we don't get it, at least we come away with questions. And if we have questions, hopefully we can find the person to help us. What idiots you had to deal with. I bet they were the only doctors you had around you at the time and what a vulnerable time it was to have to know what to do.
My ex-late husband (I'll save that story for later) had five heart attacks on 5 different occasions. I was teaching at the time, had a child in school and frankly, had no idea what to do so the doctors were making the decisions. I had no idea how to research and never thought about it. While in another city, he had one of the attacks and I challenged a so-called well-known heart specialist with his "new" diagnosis. Anyway, he said I couldn't tell him he was wrong and I said "What?" The nurse jumped in and said to me "Do you know who you are challenging?" And it went downhill. It took me 18 hours to get him transferred.
It's a new day with our abilities to research. Some doctors like us to be better informed, but most do not. Too bad!
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I so get it mem...So sorry you had to go through that, And like you the story is even longer and more horrific. Hospice and then in the hospital in 4 point restraints because the hospital took him off his morphine...cold turkey.........But you learn to let go , but you do learn. CRAP!
I also have learned a great deal. A good thing...for me..a little too late for my hubby. No matter what I knew at the time, I could not have saved his life. I fought like a warrior for him...I choose to do the same for me and my DH ....sorry, he deserves to be called my absolutely darling husband to the absolute max ...we insist on the best from the docs, tough to get now a days.
So ladies ...yes I wear a tiara on occasion, and can be rather opinionated...but it is for good reason. It is because I want to protect you all from idiocy and bad decisions on your doctors part. I want you all to know that you have to buck up and be advocates for yourselves....because I have seen the worst of it all.
done
Eve
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You ladies are all fantastic! I've finally finished reading all the posts, but am exhausted...so will just leave you with this pic of Sammy, my companion when I'm home in the recliner...
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Dtkd: now that's relaxing! Here's mine my baby...just kidding! But it does look like him...
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Wow, my heart hurts reading what you crazy strong, wonderful women have been through already. It is a good book in the making....Eve?
Marissa, I promise we will get together for coffee since I will be spending time in your area when I visit my DD in Sparty land this fall.
Beverly, I can relate to your comment on needing to spend less time on BCO to refocus your mind on something other than cancer and all it's implications. I have considered it myself. Then I find myself not quite ready and start wondering how all of you are doing and find myself missing the connections we have made. Kind of like my morning coffee fix.
Michelle, You get the credit for this image. It was taken from your blog which is wonderful! Thought the image described us perfectly
Love reading your blog! http://michellesneighborhood.blogspot.com/
Best, ann
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Hi all. Have not posted in awhile. Having a hard time emotionally.
Who am I now? Am I happy with the life I have? How do I move past my cancer? How to have conversations that dont involve cancer? How to live with this new body?
My chemo, rads. Bmx are done. Ovaries out in a month. Not sure when capsular contracture on left will be fixed. I cant go back to work yet as my rotator cuff is causing mobility issues and pec muscle is in constant spasm.
Just feel exhausated by it all and sad.
Linda
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Linda,
I read your post....I am here feeling your pain.
What is your life?
What did you do before BC?
Who do you have in your life?
Are they supportive? have they supported you?
were they important before BC?
The physical issues do have a solution.
No one can be the same person after BC.
We have to change...but if we so choose, the change can be for the better. We have to make that choice. Simple, not so much, possible OH YES.
The new body is another thing, Forgive me, but I don't remember if you are married. Boobs, foobs, flat, big, nips or not. What we have ended up with is it. that is what we have....we can keep pursuing perfection for all of our lives, there is no such thing. We are beautiful period...PERIOD. We were beautiful before surgery, chemo, and rads. We still are, YOU still are!
Moving past cancer...also a decision ...I do believe that we have to get rid of being a cancer patient....and move on...yes...easier said than done...but, Linda, you did the chemo, you suffered all that that entails...you are brave, amazingly BRAVE. Don't ever forget that.
Use that experience to move yourself forward. KNOW, KNOW in your soul that you did it...you made it...
and now WHAT is it YOU want to do with your life....WHAT is in your heart that excites you?
Take the time you have so earned to answer that question. And then GO for it.
Love you
Eve
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Good questions Eve. I have a busy life with husband and 6 boys (only 2 life at home). I run a business and am an ICU nurse with prem babies and a landlord and live on acreage. My husband is good but still does not get that I am not the old me. I still get tired alot, aches and pain,.leftover neuropathy in hands and feet. Kids are egocentric of course. I have good friends and a supportive mom.
I am just not sure where my passion is. I love my job but if i won the lottery i would be happy to retire. I just turned 50 last week and it just felt like another day. Nobody seemed to understand that it should be a special day as last year we did not know if i would be here.
People just want us to be normal but I cant. I realize part of it is loss of control and i have always been in control.
Just want to make a difference and use this extra time I have been given well.
Linda
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I can only speak for me...and I am always in awe of those of you that had to go through the process of chemo...I saw the awful side effects and tried to help my husband through the process but you can never really know what it is like unless you have been there.
Having said that..i had feelings at that time , where I just wanted the whole process to be over, I wanted my husband back. I was scared that he was going to die and I didn't know what to do with that. Not saying to give your husband a pass, just that is how I felt at the time.
I have learned since then that we only have our own reality.....we can't assume other people will understand what our expectations are unless we quite frankly tell them. in my experience if and when we state what we need and expect and want they will come through.
Linda, you know there is no normal.
To take a phrase from Forest Gump and change it ...Normal is what normal does.
Find your passion, maybe you already have, in being a nurse, those little babies must be an affirmation that life goes on?
Keep asking questions.....the answer will be there.
Love you
Eve
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Forest Gump is my fav movie, great saying!
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Linda,
Glad you have rejoined us. Nothing further to add from what Eve has said other than I hope you stick with us. I think you will find a source of comfort from the women on this board. I know I have learned and been comforted by them.
Take care,
Ann
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Thanks Ann. I have been reading everyday just had not posted. Everyone here understands the struggles we face and we feel accepted and loved.
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welcome back Linda! I get what your saying...deep breaths, slow breaths, one day at a time. You've made it through this past crazy and unexpected year, feel proud for that. Your here for a reason and Happy Birthday
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Ann, meant to tell you that I loved the "pink poster" you posted. I absolutely loved what it said, so true . And yes I would love to get together in Sparty land in the fall
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Welcome back Linda. I'm sending you big hugs and wish I could help. I am sure it's discouraging to have to go through so much, but you are a true warrior, and even the toughest women need to take a break, or have a good cry.
We're all struggling with the loss of control and the changes we face in the mirror, but Eve is right, we are all just as beautiful as ever, because it's the light within us that people see, and what makes them smile back at us.
You will find your silver lining...you just need to rest up and heal...and please post when you feel like you need a pep talk, or PM one of us. We're all here for you.
Love and hugs,
Diane.
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I think people tend to forget the emotional part of this journey. Physically, we get up every day, put a smile on our face and go on. I have a second job as an admin to our pool, and this this year the workload has doubled because of some changes, but also because I am in a much different place than I was last year. I have a harder time dealing with bitchy people, both kids are permanently home from college (daughter graduated and son will be commuting in the fall), so my house is a mess, not to mention I am not sleeping well. I take xanax occasionally, but it doesn't always work.
My exchange surgery is June 17, but I know just because my physical journey is in the homestretch, my emotional one may never end. Add tamoxifin to the mix, which I will start after my surgery, so that will be a whole new ball game.
But I am blessed that my BC was caught early. But I do know that it has changed me forever.
God bless you all.
Claire
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Linda,
I'm having shoulder issues, too, and it really sucks. It keeps me from doing a lot of things. Right now they want me to rest it! Argh! Easier said than done.
Ok, sisters, grab a cup of coffee because this is another one those long posts. You know I like to share - a lot, lol!!
Early on I sort of figured out that I need to find moments of joy...little snippets of happiness when you get outside of your head and just forget about cancer, moments when you can laugh - really laugh - or just smile and for a moment you feel good. It's something I learned to do with my mom who has Alzheimer's. All we have are moments together. No past. No future. Just here and now.
We are on a healing journey. And yes, there's life with all it's busy-ness and distractions and bumps in the road. Wow, Claire, you're dealing with so much right now! Be selfish with your time is all I can say.
Many years ago I was diagnosed with clinical depression, so I'm always wondering when I'll be back to normal - because I wasn't ever "normal' before. I don't even know what normal is. That's the hardest part for me, So I've learned over the years, how to 'fight' for my happiness every day. The only difference is now I wake up I feel pain in my shoulder and it reminds me throughout the day that oh, I had cancer and now I'm dealing with This. My wrist starting swelling last weekend after a slight sunburn and now I'm sooo scared I'm getting lymphedema. But I can't let it paralyze me. Sometimes I feel like my life is a 3 ring circus and the star attractions are fear and worry and dread. So on "those days" when we're doing our thing the main thing I gotta remember is that I'm the ringleader, so I put them back in their cages where they belong and try not to feed them. Someday I'm going to lose them and it'll be a different tune, a much better show. This I gotta believe.
To put it realistically though, I feel like I am getting better at dealing with this. Every day I get up and while I don't plaster a smile on my face, I look out the window and am in awe. The whole world is blooming right now! I waited all winter for this! Our summers are only 3 months long. There is sooo much beauty out there. I love nature. To me that is life. There were many days before cancer (really, almost half my life) when I wasn't necessarily glad to be alive - I missed out on a lot, but that's depression for ya. It's a beast. But now, after having cancer, I'm so glad to be alive! I wish and hope and yes, almost pray that I live a looong life, just to for those simple pleasures - like a sunny day, working in my garden, planting flowers, or going to the lake.... Simple things like shopping - I love thrifting or finding a good sale. Other little moments of joy include driving around with the top down on my VW playing a song I love and singing LOUD! Treating myself to a rare cup of coffee at Starbucks (I'm on a budget). Yes, very small pleasures indeed. I don't have kids or scads of extended family or supportive friends around me, so I try to get it where ever I can find it - a passing conversation with a neighbor, a rare sit and talk with my brother, a chat and hug from a former co-worker I bump into at the library, a smile from a stranger - I go for that and hold on to it tight whenever it's there.
Right now I'm reading snippets of the book "Crazy Sexy Cancer Tips" - and I highly recommend it! She really does have some great tips and altho her cancer story is very different from ours, I can relate. Her mantra is basically: Why be normal??? I so agree!
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So I have my exchange June 2, hysterectomy July 1 and just got call from my superintendent. Not only will I not be at the school I was at, I won't be in the same grade. I'm going from grade 6 to kindergarten!!!! Feeling a bit overwhelmed. Have to collect my things from my grade 6 class end of June and as soon as I'm up to it gotta check out and set up my new class..... Oh boy!!!
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Beverly
And so you start on your new pathway...who knows where it will lead!
Just wondering if any of you girls have ever tried aromatherapy and massage. I'm interested in integrated therapies but have not tried it yet. Massage isn't covered by insurance, but I'm thinking about doing it anyway. I read about a study that had positive results. They used jojoba oil, sweet orange oil, lavender oil, and sandalwood oil. Interesting...
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Sounds heavenly, Mary. Hey if it helps..go for it.Sometimes I thinks Diane's and Ann's marshal arts are the way to go...I would love to box or kick the hell outta something.
thanks for sharing your story about depression. You are not alone. I too have been diagnosed with clinical depression and supposedly bi-polar...I totally understand the never getting rid of the effects, the feelings...mine is a result of my father abusing me ....those thoughts bubble up every once in a while and are almost always in my dreams, unless I take half of an Ativan and then I sleep like a baby.
I have never felt normal, what I believe to be normal anyway. I felt an outcast as a kid.....and usually scared to death most of the time.
Over the years I have been in and out of therapy and taken just about every anti depressant out there.
Like you, I have learned to put the demons in a place where they are locked up. When they start rattling the bars...wanting out, I just laugh, hug my husband, and dance. I might eat some crunchy Cheetos too....you know how your fingers get all orange...yum! I am a nature lover too. The jays and cardinals, finches and chickadees are all so thirsty...they come to my bird baths and to see them enjoying the water is so comical.
Yes indeed, why be normal? It is way too much fun to keep everyone guessing and my family and friends expect and love me because I am me.
Oh and I am sooooo jealous that you have a VW convertible........my favorite car....take me for a road trip? We could drive up to Copper Harbor and look for aggies.
You take care my friend, enjoy the warmth, I know we enjoy yours.
love and hugs,
Eve
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Eve - anytime you want a ride just let me know. I LOVE road trips!
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