The past couple days haven't been the best for me mentally. Stuff piling up. Been trying to keep busy around here to keep my mind from thinking too much. Getting my spring cleaning done early this year. I just need to get the results from the BRCA test so I can move on. Hate sitting here with cancer and not doing anything about it. And I am realizing I'm already a burden to my family and haven't had anything done yet! Matt won't leave me alone unless he HAS to. I tell him I'm ok but he's not having it. I try to hide my bad moods and fear so he doesn't worry but apparently I don't do a very good job.


NEED TO GET THIS OVER WITH!

Loving these!

Oh, I am so having a couple of these!!


http://www.breastcancert-shirts.com/

I'm kinda on hiatus while waiting for test results. Enjoying the Dr free days, knowing my immediate future is going to be filled with dr office visits and the hospital, ugh. I hate hospitals. I've been thinking all weekend that I need to get my spring cleaning going because when surgery time comes, I won't be able to do it. So that's what I'm working on this week, some deep cleaning. and sewing. Keeping busy.


Also been thinking that somehow I'm going to have to let others clean my house, cook the meals, do the laundry. gulp. I am going to have a hard time letting go of that. I've been totally, 100% in charge of all of that for 25 yrs. I've never asked for help around here, never really wanted it. I like it clean MY way. So that's going to be hard for me. But I keep telling myself it's for a short time and then we can move on.


Same with this summer. Been worried about my summer being "ruined" because of soreness. What I need to think is, it's one summer. And I will have many more summers and I won't have to worry about cancer. Need to think of the positive side of things. Going to have enough to worry about and deal with.


I'll be back when I get my results....unless I think of something else lol.

Pride

I wanted this in a separate post....just because. Last night we went out to dinner. Kyle, who will be 19 in March, hasn't really asked too much about what's going on. I tell him some things and I'm sure he's heard me on the phone, but as far as him asking questions, not really. The night we told him, all he asked was, are they going to get it out of there....forever? =/


So last night, sitting in the restaurant, he says, so, how come you haven't done anything yet? It's been a long time, don't you need to have surgery? I said, it's been a month and yes, I need to have surgery. I'm deciding on what to do right now. Told him about the BRCA testing for today and said, I'm waiting to get the results back from that. But I already know what I want to do....I'm getting new one's. That's how I put it to him. He sat there looking at me, quickly glanced down at my chest and said, you're joking! (we ALWAYS joke with each other) I said, no I'm not. I'm getting new ones, these are no good. they can throw them away. My little boy then said to me, how are you going to pay for that? I said, insurance will cover it. He said, because I have $2000 saved up that you can have if you need it. OMG. It's his car money he's been saving. Doesn't he know not to do that to me in a restaurant?! tears. I am so proud of him. He is such a compassionate, loving, generous young man. We met him there and on the way home I told Matt, there are not a lot of 18 yr old boys that would even think to give their mom all their money they've been saving up for a car. I was completely overwhelmed. I am so proud of him.


This morning he came out to go to work and I gave him a big hug. He will always hug back but this morning it felt different. He's usually a little stand offish, not really a bear hug, but this morning I got the biggest, longest, tightest hug I've had from him since he was my little attached to his mama boy. 


sigh

Test Day

Had my BRCA test today. They tested me for the BRCA1 and BRCA2 and the BART but I can't for the life of me, remember what that one is for. And I'm a little confused on the 1 & 2 on the BRCA. Time to research again!! Seems it's all I do anymore! 


They took a FULL medical history, wanted to know ALL the cancers in my family, not just breast cancer. When you sit there and name them to an oncology nurse, you realize, wow, there's a lot of cancer in my family!! She said that too and made a couple wide eyed comments about it....just what you want in a cancer center!!! She said there will be no problem with insurance paying for it with such a strong history of cancer in the family. And when I asked when I get the results she said it used to be 21 days, but this company (see previous post to see what buttheads they are!) keeps making changes and now she's not sure how long it takes. She's going to call me when they come in. I HATE waiting without at least a ballpark date!!! So I'm using the 21 days as my ballpark! Hope to find out by then!!! Really want to get surgery going and over with for warm weather!!!


Oh, and I was wrong about the whole scope and spit in the vial thing. It was a blood test. And I was in the chemo room. Not a place I EVER want to be again!!!! Put a pit in my stomach sitting in the chemo/radiation chair and 2 ladies came in while I was there with their hats on and you could see that they were bald under there. Thank God mine was caught early enough to not need chemo and thank God I've made the choice I've made because I do not want this coming back "with a vengeance" as I keep reading and kicking my butt! No, I plan on kicking it's butt!!! Hate going through this, hate going in these offices and hate all the stress and worry!!!! 


Matt is stressed and he won't really admit it to me. He did at the beginning but now he says he's ok. You don't live with someone for 22 years and not be able to tell they are worried about you. He got sick the day I got my diagnosis and he's not better yet! he got better and then got it again! Stress, that's all I'm sayin. He hugs me a lot more and tells me he loves me a lot more...which I love ;) . He's always been like that, but now even more so. Guess it's that whole taking someone for granted thing. 

DNA testing

I called the lab yesterday for the BRCA testing. Come to find out, there's only 1 lab in the US that does the testing. They have the patent on it. The social worker at the oncologist told me that they are hoping for a supreme court ruling in June for other labs to be able to do the testing. Meanwhile, they do what they want. I asked them if my insurance would cover it because its so expensive and they said the way they do it is, you send in a sample...which btw, I read on another blog that you swish a little mini bottle of Scope and spit into a vial. I thought it was a blood test. So, you send in the sample along with a signed paper. they receive it, check with your insurance and then they send you a paper saying whether it's covered or not. If it's not, they say they will not charge you anymore than $375 and they take payments. The social worker said they don't even charge some people. the problem with this process is, you don't know if you're going to have to pay, get a reduced price, nothing until it's all done and you're billed. At least they can't charge more than $375. The Dr told us it was $2000! So I am going to go ahead with the test because the oncologist says with such a strong family history, all on my dad's side, it's best to find out. If it comes back positive, then it's a sure thing to get the bilateral mastectomy and reconstruction if I choose. It's the best choice because then the chances of getting breast and ovarian cancer are 70%-90%. then my female family members can decide whether they want to be tested too.


Sooooo many choices to make, tests to take, crap to deal with. The test takes 1-2 weeks for results. I want to get my surgery done and get healed before spring and summer!

So I laid awake most of the night last night. Mind wouldn't shut off. Miserable night. No one should have to make the decision whether to cut their boobs off or not. Deep down I know this is what I need to do, for me, for my mind, but it's not an easy decision. I'm scared. Scared of the pain. Scared of what it'll feel like to have fake boobs that you have no feeling in. Scared of the phantom pain. Scared of nerve damage. Scared of never being the same again. Until this happened I was a normal, healthy person. I RARELY get sick, don't have any problems and now I have to make this huge, life changing decision. One that can't be turned back once it's done. No matter what they end up looking like, feeling like, pain or no pain, it's what I'll have to live with forever. But if I don't do it, not only do I have to deal with the radiation and hormones....which btw, I know millions of people do and they come out fine, but for me, I don't like it. I don't like the side effects and I've read too many blogs with people complaining about burning in their throats so bad they can't swallow and end up in the hospital dehydrated and no taste buds anymore and joint pain so bad they can't function and it lasts for years. It's just not for me. Don't want to face the depression. But am I creating depression in another way?? It's mind boggling this choice I have to make. This forever life changing choice. 


Anyway...if I don't do the mastectomy, then 5, 10, 20 years down the road I'm faced with breast cancer again. And they say if and when it comes back, it comes back with a vengeance. Then I'm really in for the fight of my life. Right now it's not a fight for my life like it will be then. But it's a window to fight for my future. Just scared of my future. 


Matt said to take today and just stay in my pajama's and watch mindless tv. Why does he think the real housewives of Beverly Hills, Tori & Dean and Teen Mom 2 are mindless shows??? ;)  I have never been able to just stay in my pajamas and do nothing all day. But today I might try.

I hate being a patient

I've always hated it and I always will. I don't do dr's. I don't get physicals, check ups, blood work, all that. I avoid it. I hate going to the dr. I am not a good patient. I'm paranoid, I worry enough for everyone who is reading this and I'm a basket case with bad news. Therefor I ask and ask and ask and I expect clear, defining answers. Do I get them? no. I guess this is going to have to be 100% my decision. I'm tired of dr's telling me this is the good kind of cancer to get. Don't get me wrong, if I HAVE to have cancer, I want the good kind. But in my world, there is no good kind. 


I woke up in a bad mood. Pissed off at everyone and everything for having to do this. For having to go to a effing oncologist today. why me? I told Matt, I've hated my boobs since 5th grade. Yep, 5th grade. They've been nothing but trouble for me. In the way, too big, shirts don't fit right, forget looking good in a bathing suit. Forget ever thinking you're going to wear spaghetti straps. Not when you're this size. I've been harassed, teased, made fun of since 5th grade. I've been lectured by my mom about wearing a bra when back in the 70's everyone went braless. No halter tops for me.  My back hurts constantly, I have grooves in my shoulders, I have to buy the most expensive ugly bra's. I've always hated my boobs and look what they've done to me now.


I went to the dr and he said basically the same thing as the surgeon. Get the lumpectomy. He was happy I tested positive for hormone receptors. I said I didn't want them. I don't want to take something for 5 years that gives me a stroke, messes with my heart, gives me cancer of my uterine. He said they have a new kind, much better. I come home, look it up, it causes heart failure, fatigue, chest pains, joint pain and osteoporosis. I am already at high risk for that, my mom has severe osteoporosis. And it said you can't take it until you've taken the cancer stroke kind for 3 years. 


He also said radiation following the lumpectomy. I don't want that either. He tried explaining that they can shoot it in you at an angle so it doesn't go into your body too much. He tells me I'll need extra mammo's followed by MRI's. THEN tells me not to get too many mammo's because it's too much exposure to radiation?! wtf?! Then he shows us statistics on the computer and it says maybe I wouldn't need radiation so he goes with that. Way to be wishy washy. He was a nice man, seemed ok, but when I have cancer I want someone REALLY confident in what he's telling me. 


I told him I can't deal with all this, thinking bilateral mastectomy and reconstruction. He said if it's affecting my daily life, if I am stressing out too much and it's making me sick, then some women do choose that route. But he would rather I do the lumpectomy. Problem is, I do that, they find dirty margins (because I have clusters of calcifications) then we go back for another lumpectomy. So then I'm missing 4 walnut sized pieces of my boob. We can continue to do lumpectomies until we have a clean margin....and what? no boob left? and still the radiation and hormones. I don't HAVE to take the hormones but they are what reduce your risk for recurrence...for 10 years. 


He did recommend that I be tested for the BRCA gene. They didn't know if my insurance would cover it and it's $2000!! They couldn't figure it out, so they handed me a paper with the phone number to call and find out. Ok, I don't have my file. The dr said they might cover it because of my strong family history. But now I have to call and tell them all this? Isn't that for the office to do? I called, left a message, no call back yet. If I do test positive, he said 70% chance I'll get an invasive breast cancer, so no question there. 


I read this blog and the title of it describes exactly how I feel right now....cut the bitches off!

Tomorrow is my oncologist appt. Just to ask questions, see what he thinks and hopefully he'll agree with my decision. If not, I find someone who does. The more I read, the more I am 100% positive in my decision. I am not playing with this crap!!! I want this done and over with!

The social worker at the Great Lakes cancer center who contacts you said they might want to test for the BRCA gene. The dreaded gene that says whether or not you'll get breast cancer. I THINK, but not sure unless I get my book out, that if you test positive for this gene, you have a 90% chance of getting breast cancer, cervical? or ovarian? cancer or both. I would like to be tested because then Kari can get tested and also because if I'm positive, there's no question. I'll get my bilateral mastectomy.

I'll be on tomorrow with an update.

Choices

My head has been swimming all weekend. Consumed with decisions, my choices. Thought maybe if I typed it out, I'd feel better.




Lumpectomy. they will take out a piece about the size of 2 walnuts. I have a titanium bit in there to mark where I had the biopsy. She (the surgeon I'm not going back to) said they will examine it and see if they got it all. If that titanium bit is in there, they know they got where the cancer cell is. According to the book she gave me, which is very educational and interesting, it says they check the margins, the edge of the piece they take out. They look to see if there are any cancer cells around the edge. If there are, then they either didn't get them all or there's another kind of cancer, or both. That's called a dirty margin. It said this process is not 100% reliable. They can take out that piece and there could be more cells an inch to the right or left. There's no way to see them.  She said at that point they can go back in, take more (major pieces missing from your boob!), test it again and go from there. Have radiation to kill any remaining cells.


Radiation scares the crap out of me. I don't like the idea of zapping me with radioactive stuff. poisoning me. Killing cells. the book says you can't do radiation there again. What if it comes back? You can't wear deoderant for the 4-7 weeks you're getting radiation. You're tired for weeks after you're done. and it could change the look of your breast. Leaving it wrinkled, tanned in that one spot and sometimes scarred.


The surgeon said I tested positive for hormones....or something like that. I'd have to listen to the recording again to see how she worded it, but what she meant is that I would be put on a hormone receptor for 5 years. Probably Tomaxifen. I read about that too. Worse than radiation. It has horrible side effects. Stroke, pulmonary embolism, blood clots, uterine cancers..the list goes on and on. Says especially for overweight women. Hello!! I told her that my dad had a stroke and she asked from what. I said irregular heartbeat and I have that too. She said, that's different. how?? A stroke is a stroke and I have a lot of factors to have one anyway without adding a pill for 5 years that can give me one. And why would I take a pill for cancer that can give you cancer?????? 


I don't like any of the options. I have to choose something. One of my choices is to wait, see what happens. um, no! I want this gone!!


If I have the lumpectomy and they think they got it all, she said I'd be done. BUT, I'm now at high risk for cancer later on. And since this is the type that spreads to the other one, it will come back at least in the other one. Maybe not for 10 years she says. Ok, in 10 yrs I still plan to be active and living! I'll be 61. My sisters are around that age and they are like me. They don't seem in their 60's. I want to be like that, not getting cancer again!! And I definitely don't want to do mammo's and MRI's every 6 months until I get cancer again. I would feel like a ticking time bomb!


I have a cluster of calcifications and one of them went bad. They will want to keep their eye on the rest for the rest of my life. The chance of one or more of them turning into cancer is high. Likely to happen. these are all the things I heard at the dr. But she still wants to do the lumpectomy. She said if it comes back with other cancers then we can do a bilateral mastectomy. I say why wait? Why take chances? I'm high risk, I have a huge family history. it's more than likely coming back. Why do all this and then realize we need to do that anyway. Or why do that and then wait for the next 10 years for it to come back? dumb.


I made my own appt with an oncologist today to ask my questions, talk it over with him, see what he thinks. But now I'm second guessing myself because an oncologist is there to set up a treatment plan. I don't want a treatment plan. I want to be rid of this and to me, a treatment plan is just putting it off for up to 10 years. Matt said let's just go to the appt and ask our questions, get a second opinion, ask to be referred to a good breast surgeon and go from there. So tired of all of this!! Haven't even been dealing with it for 1 month and I'm SICK TO DEATH of it. 


In my opinion, I need to find a surgeon that agree's with me. Dr Susan Love said some women choose the mastectomy right off. They don't want to wake up every morning and think, is this the day I find a lump? Well, that's me. I think some people think I'm making too fast of a decision. I don't. It's ALL I've thought about since December 14th. I've read and read and read and they all say the same thing. They've been watching these calcifications for years and one finally went bad. Do I want them watching for the next 10, 20, rest of my life? no. 


Now to find a surgeon that agree's with me...or at least has enough compassion to understand.


fun, huh? it's a wonder I'm not insane.

digging around, freaking out

So, ever since I got my diagnosis, I started digging into my family history. I knew there was breast cancer there, but the more I dig, the more I find. It's ALL on my dads side. 2 of his sisters had it, but neither died from it. His niece, my second cousin had it and she did die from it, really young. Thinking late 30's, early 40's. I emailed with her dad, trying to figure out what kind she had. No one seems to know but he did say it was diagnosed at stage 1 and it progressed from there. She fought it for 5 years. It's extremely scary to me that it was diagnosed at stage 1 and she lost the battle. She had chemo, a mastectomy and I'm sure all kinds of other treatment, yet lost the battle. If I let it, my mind could really panic right now. I'm not even at stage one, which is a good thing, but it is the kind that spreads to the other one and it does come back. 


One of my aunts had it and my sister emailed with her and hers was very tiny, in one spot...just like me...and they thought it was best to do a mastectomy. And she took the tamoxifen for 5 years. I don't want to take that stuff. It scares me. I read all about it and the side effects are truly scary. Don't want to take any hormone receptors. 


The email also reminded us that a first cousin had breast cancer too, ugh. Too many discoveries for a panicked worry wart. Making my stomach not want to go out to eat tonight. I'm just getting to where I can eat more than one meal a day. Problem is that now that I've moved past the not being able to eat because of nerves, I have switched to stress eating. ugh, again.


All of this is confirming the decision I've made. I want a bilateral (double) mastectomy and reconstruction. I want them gone. I don't want radiation, I don't want hormones for 5 years and open myself to more cancers, I don't want to just sit here and wait for it to come back. I want them gone. I've never liked them anyway and now I just hate them. 


Check your family history people and by all means, get a mammogram!!

Appt with surgeon today

This is going to be short because I am so confused and irritated right now. All I can say is, I'm getting a second opinion. The surgeon I seen contradicted everything she said at the first appt and pushed a lumpectomy down my throat. She wouldn't answer any of my 13 questions I had for her, let alone let me even get the whole question out there. She'd interrupt me and go on and on about what she wanted me to hear. Came out of there so pissed off and confused. I'll be making phone calls tomorrow for another office.

The worst day of my life.

I'll start from the beginning. And they all won't be this long, I promise.


I went for my yearly mammogram the week before Thanksgiving. The Monday after Thanksgiving they called to tell me I needed to have a biopsy. Scared the crap out of me because I've never had to do that. I've always had to have an ultrasound because I have dense breasts and calcifications and they always want a better look. But they always send me on my way after the mammo and say, see you next year. So I panicked a little when they said biopsy.


I went on 12/12 for the biopsy. How embarrassing!! You lay on a table with a hole in it and let your boob hang down through the hole. I am by no means small breasted so that was embarrassing!! They numb the area and take about a thousand images and take their sample. Not painful. I describe it like dental work. You feel it, but it doesn't hurt. Took about an hour. They place a tiny little titanium bit where they take the sample so that when you get your next mammo, they know you've had a biopsy in that area. Then I got a mammo. The girl said it's my new baseline. They told me 3-5 business days until I got the results. That was a Monday.


On Wednesday, 12/14, I was driving into Pontiac to meet my mom & sister for lunch. I was going in early to do some Christmas shopping. I was about 15 minutes from home, it was 9:37am. I'll never forget that. My phone rings. My stomach drops. I see the number and my stomach wants to puke. Full of nerves. Recognize it's my gyno's number. Panic sets in. I answer, voice all nervous. She says she's calling from the dr office. I don't remember many details of this call now. Don't know who she was. She asked if I have received a call about my biopsy results. I say no. My mind is racing. Funny how many thoughts you can have in seconds. I remember thinking, it's only been a day, not even a day and a half, this isn't good. 


She's going on and on. About what, I have no clue. No memories. I just remember her talking a lot. I hear her say positive cells. I interrupt and say, does this mean I have breast cancer?? My voice is squeaky and really shaky. She hesitates and says, yes sweetie, I'm so sorry. I don't THINK I said anything or cried right away, but I don't really remember. I remember thinking, I can still go meet mom & Jill, it's ok. But then I start crying. She says, I know, it's a lot to take in. I'm driving on M-24 at 55mph and it dawns on me that I should pull over because I don't remember driving. I whip into a parking lot. I don't even remember looking for traffic. Someone should tell that woman that she should ask where you are before you tell them they have cancer. 


I pull into a parking spot and lose it. crying, crying, crying. She finally asks if I'm home. I tell her no, I'm driving, going shopping. More crying. She says she wants me to come in and talk to the dr tomorrow. I say, TOMORROW?!! NO! TODAY!!! She says, let me put you on hold and see what I can do. Um, you're going to call me and tell me I have cancer...not what kind, not how bad it is...and expect me to just live with that until tomorrow??! Maybe she did tell me what kind, but I have no memory of it. Another girl picks up the phone and says, Hi Margaret, how are you? all chipper. I snap back in the tone "DUH!" and say, NOT GOOD! oops lol. She probably had no clue what was going on. She quickly set me up with an appt for that afternoon.


I hang up, sit there BAWLING in a complete panic. I call Matt. He had just gotten to work and I'm screaming/crying into the phone, "I HAVE BREAST CANCER!!!!" I think I just kept saying it over and over but not sure. I do remember screaming it and screaming MATT!!! and just sobbing uncontrollably. He says, I'm on my way. He wants me to sit in the parking lot and wait for him. He's 45 minutes away and doesn't want me driving. I don't want to sit there, I want to go home. Later on he told me, I had no idea what you were saying. I couldn't understand a word you said, but knowing we had the biopsy Monday, he figured it out.


Next thing I do is text my sister, Jill and say, I'm not coming. I don't feel good. I remember texting but I had no idea what I said. I had to look later than night to see. I drive home and to be honest, I don't know how I did it. I remember sobbing and just whaling and saying over and over again, I have breast cancer! oh my God, I have BREAST CANCER!! (remember, no clue at this point what kind or how bad). I remember coming around the corner off the main road and someone was sitting at the stop sign and when I looked at them, the look on their face was...shock? I don't know how to describe it. I thought why? and then realized I'm still sobbing and screaming and my mouth was wide open in a scream. =/ that's my strongest memory. That person at the stop sign must've really wondered what the heck was wrong with me!!


Matt gets home, there's a lot more crying and panic. then I'm just numb. I just sit here staring. We go to the dr...stop and buy a recorder because we knew there was going to be a LOT of information coming our way. The dr tells us what kind. It's called lobular carcinoma in situ or LCIS. It's the kind that spreads to the other breast. It's non invasive though, which is confusing since it spreads to the other one. It's very tiny, we caught it very early. It's curable. She sends me to the surgeon to talk. She says same things. Says it's not stageable, we caught it so early. She was talking about a lumpectomy and radiation. She sends me for an MRI. More tables with holes for your boobs. 


I got the results for that. It hasn't spread, just the one "suspicious area" as the report says. I go tomorrow back to the surgeon so she can tell me what she thinks I need to do. The nurse from the biopsy called me and said she'll probably send me for a consultation with an oncologist. If she doesn't, I'm going to ask her to because I have a LOT of questions. I want to know if they think the same thing as the surgeon. She seems really nice and compassionate, but she is all about preserving the breasts and at this point, I don't know if I am. I will get all into that in another post though cause this one is long enough.


It's much nicer to type it out than to have to tell everyone over and over. Me & Matt decided not to tell anyone until after Christmas because I love the holidays and have always tried to make them fun and happy for my kids and the last thing I wanted to do was to make them sad. Same for my mom and family. I didn't want to spend Christmas day over there sad and people asking me questions and talking about it. It was the worst 10 days. It was so hard to hide. I wanted to tell people. I had to lie sometimes and hated it. Felt so guilty and like everyone knew I was lying. We've told pretty much everyone now. there are still a few that don't know, but I want to tell them in person and it has to be the right time.


So there you go. That's how I learned and what I know so far. Another post to come after the dr tomorrow.


Marge

introduction

Hi everyone,


Thanks for coming to read my brand new blog. I've created this for 2 reasons. So I have a place to vent about my brand new breast cancer, known as BC and so that my friends and family can keep up to date on what's going on with me and I don't have to call and keep saying all this ugly news over and over...or tell someone and then they tell someone and by the time it gets to the last person, the details are all messed up. 


Please note that this is going to be the truth, the whole truth and nothing but the truth. Like I said, I'll be using it to vent, so this is your language warning and it might get personal at times...I'm sure it will. I won't be posting every day, but check back whenever you feel like it to see what's going on.


Welcome to my roller coaster! =/