2012 sisters

The conversation about diet was interesting.  I could go all unprocessed and vegan on the world, but I know myself better and I won't.  I'm just going to make smarter choices and introduce more fresh fruits and vegetables into my diet, try to lower the carbs, and eat good, lean protein.

And exercise?  Cripes, I'm so fatigued from the Tamoxif@ck that I can barely function.  I live a block from work and I try to go down and around and extra two blocks on the way home so I at least move somewhat.  But this past Saturday and Friday all I did was sleep like my cats.  

As for the fighter/survivor?  Whatever.  I've got Stage IV and I don't see this as a fight, personally.  I don't want to get caught up in the battle metaphors, although they're just as good as any I suppose.  I am going to manage this disease just as a Type I diabetic manages their disease.  Or someone with Crohn's manages that dreadful condition.  It's going to be a way of life.  I've always been a fighter and an advocate in all aspects of my life, this is no different so I don't want to refer to it in that way.

Fighter.  Survivor.  They both serve to romanticize a disease already coopted by pink ribbon culture and Madison Avenue.  I don't think it does a disservice to the seriousness or gravity of breast cancer if we manage a disease. This is being fought on a cellular level that I can't even comprehend with drugs and toxins.  I think of my perspective as one of resolve and endurance.

I like Juneau's repsonse of "undergoing treatment for breast cancer."  That is what we're doing, after all.  For all of you it is my sincere and fervent hope that it is only a one-time encounter, but for too darned many it is recurrent or hangs around like luggage.

I have decided to change my doctors.  All of this bullshit talke about "holistic approaches" needs to include the patient and make them the center of the treatment.  Right now in two practices I see the patient as the product being moved through the assembly line.  Maybe the individual physicians don't feel that way and care about their patients, but I'm not going to stand for being treated as an annoyance by clerical staff.  Not now.  Not when the stakes are so incredibly high.  On to Columbia Presbyterian and Mt. Sinai for opinions.  Eff it!

Dammit I am so mad!  It shouldn't have to be this hard.  We're going through enough, dammit!!  We're all going through enough.

Hugs to all,
And a special hug for Juneau today.

Scorch

Juneau... (((hugs))).  

All of you ((hugs)).

We all have a right to be bloody mad and I love it here where we can rant and rave and everyone gets it and doesn't tell us 'to keep positive'.  

I feel like crap today. My drain hurts more and more each day. I'm wondering if I'm developing an infection there - the skin around the stitches is dark red and puffy, and the fluid is a bit cloudy today. I don't know what the point of calling my doctor is though, until I can get it out, which will be Thursday at the earliest at this point. (I'm looking at about 50mL today.)



The only thing that cuts the pain is Percocet and I only have three more. I came home from work and just cried today.



I also just feel generally unwell. My husband, who may not care how big, small, or scarred my breasts might be, can't understand that I just *don't feel well.* I'm not achey, I'm not nauseous, I just feel shitty. Bah.

Scorch/Juneau, lots and lots of virtual hugs to you. Hope your days get a little bit brighter.



Had my post op appt with the BS today. No new news. Healing seems to be going well. Onco score won't be back for a few weeks he said. I did the BRAC test today. Holy hell....I'd much rather a blood test then the mouthwash shit. Those results should be back in a few days.



My BS was on the phone with my Onc (whom I've yet to meet) when we left. The Onc office will call me with an appt. ~sigh I don't want to do chemo or any of this shit but if I have to, I want to get it started.

I'll see how I feel and how the area looks in the morning. My surgeon's office is closed now. If it's this bad or worse, I'll call in the morning.



I'm going to feel like a bum asking for more Percocet. The only reason I have any now is because I filled but didn't take any when I got my port put in. They only gave me enough this time for four days, no refills, which seems pretty low considering they wanted me to stay in the hospital overnight for pain. I know it's a controlled substance, but come on.



I'm rationing myself to one a day now, and I took today's after I got home from work, so I do feel a little better right now. I still feel rundown, but at least not in tears.

MrsCich... I am waiting to hear about my BRCA testing.  I just presumed that it would be blood work.... what do you have to do?    Doesn't sound to appetizing !!

Aruba.... (((hugs)))

Cottontail - let us know how you get on when you call your doctors office - damn it - you shouldn't be made to feel bad.

Scorchy - rant on baby, rant on

June - how are you doing out there? Hope you got some assistance!

Websister - hope you're hanging in there after round 2

Juneau - atta girl! You can do this, you can!

Allurbadday - i've been thinking about tattoos after all this too. The gold is an interesting idea.

liefie - that stinks about the rads and your TE. i'll have my permanents in when I start rads and my PS already told me that will drop my level of satisfaction on that side down a notch. great!

2fried - all i could think of when i read your post was my son's pre-k teacher preaching, "you get what you get and you don't get upset." Not quite fair, applicable or nice here. But the sad truth is, we don't know how our final exchanges will turn out, and we have to try to make the best of them once they are done. Easy for me to say in my seat right now. Wait for me to be whining in January... Your hubby sounds like a doll.

Scorchy - I love your ranting. You let that anger out sister, and let it fuel your fight! We're all here for you. And your comment about your sister made me smile. I have learned through all of this that the one thing I will now NEVER tell people when responding to their news is "it'll be all right" or "you're going to be ok." Only your team of dr's has the right to say that!

Cottontail - here's to hoping you get a restful night sleep and tomorrow brings you a better day.

Tazzy - my BRCA test was a simple blood test. Guess they have different ways of nabbing your genes.

Jpmom - I can only hope that you are enjoying some rest from your busy life.

As for me - I'm off to put on my honey mask and relax before I go to the BGC tomorrow morning. That's right - I said honey mask. With all this talk about natural stuff, thought I'd share my new find. Suffice it to say that the recent stresses of my life - along with steroids I'm assuming - my complexion has not been faring well. Went to bitch of a dermatologist who wanted to give me pills - amongst all else I'm taking. So did my own research. Turns out a nightly application of plain raw honey can do wonders to start clearing up land mines. So if you're suffering at all - give it a go! Hugs to you all!

I never heard of that Brca test using mouthwash. My brca test was just a blood test. My mom died of breast cancer and my sister and I were diagnosed the same week. We both tested negative luckily.

Scorch, I can read your stuff all day. Not that it's light reading but it's just so real. You have every right to be pissed and to rant and also to change doctors and hospitals. My husband had cancer and was treated at Mt. Sinai (has been NED for 6 years). It was a great place. I hope they satisfy you as well. I was reading your post and thinking, it was exactly what you said. A freaking assembly line. Never having had cancer before, I didn't know what to expect so I just went along with it. If it happened again, I would do things differently. I would make my own choices because I certainly never got the chance this time. After the first suspicious mammogram, they sent me from point a to point b to whatever point i'm up to now. They referred me to their choice of doctor because I of course had no idea of where to find bs, ps, mo, or any of it. I had major complications. Hell, I'm still having complications (a totally open scar from one end to the other)..... I don't know where along that assembly line to place the blame or is it just fate???? There is no end. I'm on Femera now and I'm just starting to get awful se's... mainly horrible mood swings, anger and extreme sadness and crying.... I've never felt so bad mentally in my life.

Juneau, you rant away also, girl.... You deserve it and we are here to listen.... After this week, you're almost done. It sucks and it's horrible but you can do it....

Healing vibes going out from here to there.... 

@jpmomof3 Thanks for the welcome. So far I am enjoying it very much.

My drain is because of the axillary lymph node dissection. I've had it for nine days now, and I still had 75mL today.



It looks like I'm probably going to have to delay my radiation start, I doubt I'll be ready next week at this rate. I haven't been able to start my physical therapy exercises, either, because of the drain. My armpit doesn't feel too bad, just like really sore muscles that need to be stretched (and a weird lumpy feeling), but the drain area pulls and hurts when I move my arm.

Diet studies are hard to do, many of them are based on asking someone to remember what they ate 6 months ago and how often. I am in a study now about diet,supplements, exercise and longevity in breast cancer survivors.



I was told by a friend/professor/food researcher not to eat flaxseed supplements, garbanzo beans or soy besides the usual red meat, alcohol and sugar. He didnt know for sure of course, just thought it was safer for me not to until more is known. They have very high levels of a type of estrogen. When you read the actual studies it seems like 3 different studies have 3 different conclusions or they just really don't know what to advise us. Some foods interfere with arimidex type drugs apparently.

Eat as well as you can, sneak the veggies into your kids food if you can, talk about fast food not be healthy, when they don't hate the good foods you can really make progress.

Welcome to support, Donna.

Bev, the assembly line thing is awful.  I mean, we don't know what to do.  We're thrust into this alien environment, afraid, leary, then weary.  It's like a bad relationship: you put up with the bullshit because you figure every realtionship must suck as bad.   Balls, man, I deserve better.  I'm going to have to live with this crap for the rest of my life, so I'm going to find a team with whom I'm comfortable.  Keep your assembly lines forbuilding cars.  I wanna build my life!!

 Grrrrr . . . 

I almost cried just now at work when someone asked about radiation.  Why am I so emotional about this?  I guess I was this bad before starting chemo, though its hard to remember now... 3 hours until my first treatment.

Good luck Jpmom! Waiting to be called in for the BGC. Hair started falling out in the shower this morning... Gonna have a buzzing party today before the nausea hits. Woohoo... Hugs to you all.

Ramols, it's no party bit it's one step closer to killing this ficking disease. I'm sure youll be beautiful. I know your spirit already is.



Scorchy: grrrrrr GRRRRR. If I can help.... Did you try slone Kettering yet too? They came recommended to me highly.



I was blessed to know someone in the NC field here who recommended my team, and they are a team. All in three different floors of the same wing in the cancer center. They have Tumor Board discussions when needed to discuss a single patients best plans/needs. They call me right away. All support staff is responsive and quick with follow up to any needs or questions. DR's return calls on the same business day. You should get absolutely no less. PERIOD.



I agree about responses from loved ones. Their fear speaks for them. They can't consider any option other then well be fine and even with "fine" the can disregard or diminish all the painful (physical/emotional/spiritual) steps we have to undertake in order to fight for our life; or do semblance there of.



Did you call your local Cancer Support Community yet? I know they have MCSWs to specifically assist you in navigating the hospitals and getting the quality traent you deserve. If you have please PLEASE take the time today to make the call. These are valuable resources that are there for us.



xxoo



My today is better so far because he'll at least I'm not crying yet. How's that for my yardstick lately!?