take a lesson

I got my pathology report yesterday. the cancer was in my left breast. It was a non invasive cancer and it didn't show anything invasive. No other cancer cells. showed all the calcifications, which are what lead to all of this in the first place. I had clusters of them.

the right breast also showed calcifications, the kind that can lead to cancer. It showed some cells that were indicators of possible invasive cancer in the future. she said indicators of DCIS, which is worse than what I had. DCIS is in the ductal system and spreads. I was very surprised to hear this because I've never had trouble with the right. I've never been called back for ultrasounds for the right side, never a problem. all tests done, including an MRI said right side was normal, nothing remarkable. It took cutting all the breast tissue out, sending it to a lab to be picked apart piece by piece for them to find what could've been a huge, horrible fight for my life. doesn't make me very confident of all the testing that's out there! Mammograms never seen ANYTHING on the right, and the MRI that took 1,000 images didn't find a thing either!! How freaking scary is that?!

so my lesson here is, when you have this gut feeling, deep, deep in your heart and you KNOW something is wrong and even though ALL dr's are telling you all you need to do is the lumpectomy (or whatever it is you're going through) and you're doing all this research and people are questioning what you want to do and you're getting all these opinions and comments, you do what YOU feel is the thing to do. dr's are just people too. They are just like us only with a degree. Yes, a medical degree, but this doesn't mean they know everything and it certainly doesn't mean they know what's right for you. You need to research, research and research some more. You dedicate your life to learning everything you can about your problem and then you learn some more, because you have to be your own advocate. you can't depend on others to make life decisions for you. Of course you have to listen to drs for some things, but I'm saying when you have that gut feeling and things you are reading are pointing to the same things, then stick to your guns. find someone who will help you. go to dr after dr after dr until you find someone who is willing to listen and help.

I am so thankful for finding Dr Goethals. thank you to my sister, Jill, for seeing that billboard. I was losing hope when every dr turned me away saying I was being too radical. dr Goethals also told me I was taking a radical step, but she also said that it's my body and my life and I should be able to do what I want with it. she too was surprised of the right breast findings. I now feel 100% confident in the decision I made. Believe me, it wasn't something I wanted to do. It wasn't something I ever thought I'd have to do. I was scared to death to actually go through with it, but I knew I had to for my own piece of mind. I KNEW something could go wrong. and I kept hearing stories of others who's mom or aunt or friend started out the same as me and decided to listen to the drs and even second opinions and go with the lumpectomy and then have it come back and take their life. I didn't want that to happen. And now it won't.

I am 100% cancer free. I had clean margins, lymph nodes are all good, I am healthy once again. I don't have to worry about 5 years down the road this coming back. I'm done. and I got me some 20 year old boobs for life! ;) My plastic surgeon did a freaking AWESOME job!!!!!! the ONLY scars I have are underneath. I've looked at about a million pictures to prepare myself for what I was going to look like and I have seen some pretty scarred up boobs. I have no visible scars. I am thrilled.

thanks to all of you who have supported me and listened to me and helped me. You'll never know how much I appreciate it.

week 1

well, one week down. I'm doing pretty good. still lots of soreness, especially in the morning. thats my worse time and I have a hard time getting going. By mid morning I am coming alive though. I'm a morning person so it's hard to feel like absolute crap in the morning. soooo stiff, swelled and sore in the mornings.

went to the plastic surgeon yesterday. I was worn out before even leaving the house, which made just going there hell. I woke up really dizzy (HATE the Vicodin) and kept sweating so I wanted at least a bath before going. No showers aloud yet and it's been a week (GROSS). Matt was not thrilled I wanted to sit in the tub. Not being able to use my arm strength he was scared I wouldn't be able to get out. so was I, but I was desperate for more than a sponge bath. It went fine, got out ok, even had a few laughs over the whole ordeal, but we couldn't figure out how to wash my disgusting flattened hair.

I decided to stop by great clips on the way to get my hair washed. HEAVEN!! so, got out of the tub, dressed, emptied my drains and left. I was totally exhausted already, desperately wanting the recliner. the ride, 40 minutes, to the dr wasn't fun either. I am really, really swelled.

Dr comes in, asks for my sheet that we've recorded the drain amounts on. sheet? What sheet?? No one told us to record any amounts, just to empty them and take notice of the amounts. He was none too happy, lectured us a bit, but as Matt pointed out on the way home, why didn't HE tell us the day he came to the hospital and released me? he left no discharge orders at all. so I have the drains until next Wednesday, boo. I don't think he would've taken them out anyway, still a lot of stuff.

he comments on how swelled I am, leaves and comes back with this elastic strap and puts it around me, around the top of my chest. OMG. this thing is a torture strap. It's SOOOOOO tight!!!! I can hardly breathe and feel panic coming on. I'm totally exhausted, so ready to go home, very sore and now constricted. I can't even think how to explain how tight this thing is. he says to wear it most of the time. take it off to shower or if I go to a party or something. I looked at him like he was insane. A party?! really?! He laughs.

we leave, get out to the car and I cannot breathe. Matt's telling me to undo it until we get home where I can relax. I finally do, such a relief!!! I wear it to bed, wake up at 2am in so much pain. Undo it for a while and hook it back up til 6:30am. Put it back on at 10 and wore it til 6. seems to be helping...more on the left than right. this thing is NOT my friend. I go back next Wednesday and he BETTER tell me I'm done with it. I get my drains out that day too. YAY!!!!!

So, here I sit in the recliner all day. My butt is so sore. Been on the phone most of the day and watched some stuff from my DVR. It was my first day alone. went good. Tomorrow I go see the breast surgeon. I sure hope it doesn't wear me out!! I got the ok for showers, so will be doing that tonight instead of tomorrow. should go ok....I hope. Kari is coming out to take me.

Honestly I can't believe how far I've come in one week. amazing. trying to be patient with the healing. Not like I can do much of anything anyway. Made myself lunch and was ready to be back in the recliner. Odd to get so tired from making lunch.

thanks for all the cards, flowers, gifts, texts and calls. keeping me from going crazy with boredom!

I made it!!

I can't type too much right now due to soreness and pulling, especially on the right side, but wanted to let everyone know I'm home. everything went well. surgery lasted longer than they anticipated. I had a pretty good day Friday but Saturday was absolute hell. my own fault and maybe a little bit of the nurses for not making me eat, but whatever, you live and learn. I woke up yesterday and thought I felt pretty good until breakfast came. I took two bites of scrambled eggs and realized my stomach didn't feel all that great. that created a horrible vicious cycle for the day. taking Vicodin, not eating or hardly drinking was not a good combination. My back was killing me from the HORRIBLE bed I had and so was my neck. that kept getting worse and worse and my stomach too. I ended up going home last night simply because of my headache. I knew I couldn't sleep in that bed again. By the time we got home...car ride was hell...any pain meds I had were completely gone, my head felt like my brain was bleeding and I thought for sure I was going to throw up. Matt was so upset that I came home. he called the dr answering service and he too was upset I went home (plastic surgeon released me). he told Matt I was hypoglycemic (hyper??) and MAKE me eat. I forced an orange down and a half a piece of toast, some Vicodin and started feeling better.

doing much better today. Sore obviously. Very tight and rock hard. All swelled up. It's been an adventure so far, that's for sure. glad to be home and healing.

Chest muscles tired, more tomorrow. Kari is spending the week with me, maybe I'll get her to dictate for me lol.

so happy to be home and cancer free!!!

My last day having cancer

Wow am I ever glad to be able to say that!! I've been strangely calm all day. Ever since I found out I have breast cancer, I've envisioned this day to be full of worries and stress and maybe some tears. I'm the opposite. I've been in a good mood all day and have gotten so much done! Plus, I've talked on the phone a lot!! I feel really loved with all the phone calls I've gotten today.


My house is spotless, my car is spotless, my dog is spotless lol. Someone told me that I'm nesting. I thought I was nesting when I was getting ready to have a baby. I just want a clean house before I can't do anything for a while! For those of you who know me, you know I want my house clean lol. Well, it's mopped, vacuumed, dusted, laundry done, and even got a lot of spring cleaning in this past month.


Now I am ready to move onto my new life. I have lots of plans for my new life. I am so thankful that I caught this very early and can have the mastectomies and be done with cancer. No more worries. 


This whole ordeal has brought me and Matt so much closer. We've always been close but this has changed something between us. We've never taken each other for granted but now we are really thankful for each other. Matt has done a lot of really thoughtful, kind, sweet things for me since December 14th. My favorite is the Martina McBride CD waiting in my car when I came out of the grocery store with "I'm gonna love you through it" ready to play when I started the car. He went and bought the CD while I was shopping and placed it in there. Needless to say I bawled all the way home! Have you heard that song?! I love him so much. I'm gonna love him through this too and everything else in life.


I will post when I can. I'll have my iPad at the hospital with me and my cell if you want to text me. As soon as I am able I will post here. Have no idea when that will be!


See you all when I am a new woman! :)

UGH

I really need dr's to quit telling me that this is a really painful surgery! It's freaking me out! I know it's going to be painful, duh! They tell me and it makes me think, just how painful is this going to be that 2 dr's have said this to me? oy

Countdown

I'm having surgery this week. To say that makes my stomach flop. I have really good moments and then in a heartbeat I'm a ball of nerves. I'm trying to be strong, think positive and I know I can get through this. I'm just so nervous of the unknown. Two women who have been through this told me that the anticipation is worse than anything and I'm sure that's what I'm experiencing. But for me it really is the unknown. I don't know how bad I'm going to hurt or for how long. I don't want to be stoned on pain meds. Yes, I want them to do their job, but I don't want to be a vegetable or...stoned, only way to put it. I don't want to stay in the hospital, I want to be home. Ugh, I don't want to type anymore, I'm just getting myself worked up! I will post again before Thursday. wow, Thursday. Not next Thursday....Thursday.

The date

I am having my surgery next Thursday, the 22nd. Yes I'm scared. But feel I am doing the right thing. Feel at ease with my decision. This has come with a couple meltdowns and lots of tears, questions, research, reading others stories, listening to stories of others. Today my daughter told me that she knows someone who's mom had breast cancer, really small like me, caught it early like me and decided to go the other route, which is my only other option...the lumpectomy, etc. Then 5 years later it came back and took her life. That's the second time I've heard this in the past month, so feel I am doing the right thing.


Then, reading my consent form from the plastic surgeon, all 11 pages of it, there's a section about how calcium deposits can form around the implant. These deposits must be identified as different from calcium deposits that are a sign of breast cancer. This pisses me off because ever since I started getting mammograms, they've told me I have calcifications but no one has ever told me they are a sign of breast cancer! Every time I get a mammo, they always have me come back for an ultrasound to take a closer look. I have a cluster of them and they want to look closer. Had someone told me over the years that they turn cancerous, I would've begun this research years ago. Then the breast surgeon said the same thing...you do have this cluster we'd need to keep our eye on for the rest of your life. No more clusters for me!


I've also read several times that women who take menopausal hormone therapy for many years have an increased risk of getting breast cancer. Glad I never had to take that. I have hot flashes, mainly at night and they are tolerable. I'd rather go natural anyway.


Better close this, it's storming! More later! 

Plastic surgery

Had my plastic surgery appt yesterday. Went well. Really like Dr A. Goofy little man. I told him I wanted the one step straight to implant. He said I could do it, but said that if I did that, then whatever I come out looking like is it. No changing my mind unless I want another surgery. they'd have to open me back up and put a new, smaller implant in. He suggested a tissue expander. As soon as the words came out of his mouth my insides got all upset. I've read about these on some other blogs and knew I didn't want that AT ALL. I've read that with those, they put in temporary implants and they fill them little by little so that the skin can stretch. You go in every couple weeks or once a month and they put a little saline in each time, allowing your skin to stretch. then when you reach your desired size, they take out the temporary ones and put in the permanent implants. So it's 2 surgeries. Plus, you go in for fills every few weeks over the course of 6 months or so. I really just want to be done with this. I told him I didn't want to have to do all that and he said, no, there's a newer expander out that he uses. It's your permanent implant and it has a fill valve on it with a little hose. He fills it to the size you want, leaves that hose attached and on the outside of your breast you have a little button looking thing that he uses to fill or take out fluid.


So I am going with that. He said it gives you more room to play and figure out what size you want to be. He said bigger breasted women come in and always want really small breasts and then they don't like them or are embarrassed of them but there's nothing to do about it except another surgery. If I do this, then after a couple weeks, when the swelling goes down, I can decide if they are too big or too small. If too big, he can suction some saline out. If too small, he can put some in. then I go to the hospital for a 5-10 minute procedure that I don't even have to be put under for and he takes the tubing and button thing off with a small incision and the valve closes and I'm done. 


He was going to call Dr G and get their schedules together and then I'll be getting a call for my surgery appt. Was hoping I'd get it today but nope. Tired of waiting. Been thinking about this ALL the freaking time for 13 weeks and I'm just really done. Really want to move past this and have my life back. I hate waiting, hate worrying, hate wondering. One of the blogs I read said the worst part of it all is the anticipation of the days just before the surgery. That's encouraging. so I really just want to get it over with.


I had a meltdown Sunday morning. I was soooo stressed about going to the plastic surgeon. I let it build all day Saturday, trying to hide it from Matt because he was busy working on my master bathroom :) and by Sunday morning I was STRESSED, fighting the tears. When he got up he immediately seen it on my face and asked what was wrong and I LOST it. Had a good cry and then it was over. Once I get it out, cry, talk, I'm ok. And he's the best husband in the world. He's been so great through all of this. He knows just what to say, how long to lay with me or sit next to me or stand there and hold me. He's been nothing but encouraging and supportive. I honestly don't know how I would've gotten through this so far without him. 


So for now I just sit here and wait for the phone to ring. And every time it does, I throw up a little. (jk) ;) Scared to death, but what other choice do I have? The only other choice is to sit here and wait for an invasive, aggressive cancer to form. To me that's not living. To get MRI's every 6 months for the rest of my life and wait for my cluster of calcifications to turn out another bad one. Nope, can't live like that. I was reading another blog and the girls mom was in my situation. She did the lumpectomy and all that and dealt with all the tests for years and years. Lived life stressed out waiting for test results every year and then 15 years later she got that call. So I'm just choosing to not do it that way. I want to be able to live in peace. 

And away we go!

Had my surgeon appt yesterday..3rd surgeon I've seen. This time I chose to see a breast specialist in hopes that she would see my side of things. And she's young, another plus. The last surgeon I seen was older and I thought that was a good thing because I thought he would have a lot of experience. Lots of experience is a good thing, but as far as seeing things my way, not so much. He was more old school.


This dr, who I will call Dr G. was really nice. I liked her right from the start. She came in and talked for an hour and a half. Took my whole history and then some. Asked millions of questions and asked what I knew about my cancer. She was impressed how educated I've made myself. :)


Then she went into how it works, etc. I learned a few new things, which combined with something I read in a blog yesterday, just confirmed my wanting the bilateral mastectomy. After telling us how this cancer works...single file line instead of a lump...she said most dr's recommend a lumpectomy. She started explaining how that would work. Believe me, at this point I could probably DO a lumpectomy, I've read so much and been explained to by several dr's! At one point she was telling me how when she takes the piece out, pathology would examine it and there's a chance that during the biopsy they could've missed the area or just knicked the side of it, not getting a good sample, therefor it could have a more invasive cancer right next to it. We won't know that until afterwards. She said biopsies and lumpectomies are not 100% reliable. She said at that point more surgeries could be needed. I said, you mean a mastectomy? She said yes. I have been told that by the first surgeon but she refused to do anything but the lumpectomy and then go from there. I told Dr G that the mastectomy is what I want to do for many reasons. I don't want to take the chance of missing the cancer and leaving it in me, only to find years later when then it could be an aggressive, invasive cancer and then I'm in trouble. And she said the same thing as the first surgeon and oncologist, that since I have a big cluster of calcifications that they would want to watch them forever now with MRI's every 6 months forever, biopsies if there are any changes, testing, etc. I don't want to spend life waiting by the phone. I am NOT cut out for that.


I explained all this to her and more and she said that most women want to preserve their breasts, that they do everything they can to keep them, but she has cared for women who just can't live with all the testing and worries and they choose to do the bilateral mastectomies. And some have reconstruction, some don't. She explained that it's an aggressive angle to take and wanted me to realize that I won't look the same when it's over and that I don't HAVE to do a mastectomy. But I have to be willing to do radiation and possibly the Tamoxofen or something similar. She said the hormone treatment is my choice, but it is what helps to ward off a recurrence. She said the side effects can be scary and some women suffer them and recover, some have to deal with them long term or for the rest of their lives. She asked if I'd seen an oncologist and how did he feel about the surgery? I explained that he suggested a lumpectomy too but when I explained my reasoning for the mastectomy he said he would support me and that I could use him as a reference if I needed to. And that he was helping me find a surgeon. 


The next sentence out of her mouth floored me. She said, do you want reconstruction? I said yes and she said she would set me up with a plastic surgeon she works with and get me on her schedule. I sat there kind of stunned, didn't know what to say because I thought I was going to get turned down again. I was analyzing everything she said and would say in my head, she's not going to do it. Then she would say something else and I would think, maybe she will! lol. 


So, they are setting me up with the plastic surgeon, Dr A, next week and scheduling the surgery!! She said as soon as her and Dr A's schedules worked out, I'd be in. GULP. God am I scared!!!!!!! But, I'm more scared NOT to do it, so here we go!