Time Flies

Well, today is my one year anniversary. I can't believe a whole year has passed since I found out about my breast cancer. It definitely doesn't feel like it. It was such a horrible, sobering day. I'll never forget it, every detail. I was so scared, so lost. I didn't know what to do. There were a million decisions to be made and I was so lost as to what to do.

Looking back now, I can't believe how much I held it together through all of this. Things could have been a lot worse. I couldn't caught it a lot later than I did and had to have faced chemo and other scary things, but thank God I did yearly mammograms and caught it at it's earliest stage. They had been watching area's in my breast for a few years because I had a lot of calcifications and had very dense breasts, meaning it was very hard to see. The mammo tech explained it like a really dense fog and how you can't see through it. That's how they'd see my mammo.

I was just talking to Matt about this and wondering if this radiologist caught something that had been there the last year, maybe more, or did it just turn into cancer last year? I always had to go back for second looks, ultrasounds, etc, because they couldn't see good enough. Did they just let it go every year because they couldn't see it? Or was last year the year it went to cancer? I'll never know how long I had cancer before it was found. I'm just SO THANKFUL it was found. and found early.

I have absolutely no regrets for getting the bilateral mastectomy and reconstruction. None, not one. Especially since they found signs of DCIS in my right breast. I am so thankful I don't have to worry about it coming back in 5, 10, 20 years. And thankful I don't have to be checked with MRI's and ultrasounds every 6 months. After all, the MRI didn't pick up the beginnings of the DCIS, so how comfortable would I feel depending on it to find anything else?

And, as a bonus, I love my new breasts. Yes, they are partially numb and that can be bothersome sometimes. Sometimes they itch, which I don't understand because how can something that has no tissue inside itch?? And when I scratch I can't feel it. That's strange. They are hard now. They have softened up over the past 8 months, but they are still pretty darn firm! I LOVE LOVE LOVE not owning any bra's!!!!! Very freeing!!! Especially in the summer!!! And this summer I bought my first non underwire bathing suit!!! And was amazed to just pull it over my head and over my boobs and it was on!!!! loved that!!!

I've learned a lot over this past year. Things COULD be worse. Life is short. Don't sweat the small stuff. Live like you were dying. Love freely. Laugh. Life is good. I'm happier now. when you're faced with thoughts of death and leaving people behind and you get pulled back, you are thankful, happy, content. I sometimes wonder, why me? Why did I get spared? Why did I get a second chance? So many people don't. They find their cancer late...any kind of cancer..and it's too late and they suffer and their families suffer watching them suffer and then agonize over them suffering and then they're gone. I'm so thankful I got this second chance and I plan to take every advantage of it. Matt got diagnosed with diabetes a couple months ago and we're changing our lives. We're changing the way we eat. Eating healthier, more fruits, more veggies, more chicken, less red meat. For the first time in a long time I feel like I'm taking care of myself. I want to LIVE. I want to be healthy. And not to be cliche, but I want to see my grandchildren. I want to be an old lady someday and they come stay with Grammie and have memories of me with them. I have so much to live for and thank God I get that chance!!!!

Happy healthy anniversary to me!

Thank you

Well, I am all done with the plastic surgeon. I went a couple Friday's ago to get my stitches out and it was my last visit with him! No follow ups!! He asked me if I had any questions and handed me an ID card for my implants, in case I go to another plastic surgeon or move out of state and need work on them. I also learned that they can identify you in death by them!!! Freaky! I was shocked when he told me I was all done....and thrilled!!! I have an appt with the breast surgeon on the 22nd and I'm hoping she says the same thing!

I am so thrilled with my new boobs and my scars and everything. I don't think I could've asked for a better job done. I've read on some other blogs that their PS's don't want to do the cut underneath the breasts because it's too much pressure on the incision line. I haven't had one bit of problem with that. The only scar you can see on me is in my cleavage and I think that's only because it's still pretty pink. Underneath has faded out a lot and if the one in between fades like that, I will be more than happy. I'm still amazed at how good of a job he did after looking at so many mastectomy pictures and scars on the internet to prepare myself.

I am 100% back to normal. I am doing everything just like before breast cancer. I feel great (except for the weight I gained stress eating my way through all of this, ugh), am very grateful and thankful and have a whole new outlook on life. I talked to someone yesterday who had a single mastectomy done 22 years ago, had an implant put in and she gave me some really encouraging words. I feel a lot better having talked with her and knowing life goes on and pretty soon I won't even think about the implants on a daily basis. She said I will always think about the breast cancer, it changes you. You realize how precious life is and you don't take it for granted. I told her I have some days where I can't believe this has happened to me and she said I need to find a way to help others. That makes all the difference in the world. To share the knowledge I gained through this and help someone else who doesn't know what to do and has no one to turn to. Just like I was. And to never forget what God has given me. A new lease on life, a fresh start. (For those of you close to me, it was Steve's mom. what a wonderful lady!!!!)

I want to thank everyone for all of their support. All my friends and family and people out there in the blogging world who have followed me. Support helped me a lot while going through this. So did all the blogs I read. Really nice to read others going through it so you know what to expect. I appreciate all the phone calls and kindness everyone has shown me through all of this. I owe everything in the world to my WONDERFUL, SUPPORTIVE best friend/husband, Matt. He has been the best thing in my life since 1989 and especially through all of this. And still is while I sometimes struggle with things. I could NEVER ask for a better man, husband, shoulder, brain, rock, friend.

Also to my friend Kari. You have been there for me since the day I found out I had cancer. When I couldn't tell anyone else anything because I didn't want to talk about it before Christmas, there you were. You have been right there to listen and offer support and help and a really good shoulder and heart too. I really, really cherish our friendship and always will, forever. Thanks for being a TRUE friend to me through this. It means the world to me.

So people, I guess that's it for my breast cancer blog. I don't really have anything to write about as far as breast cancer goes. THANK GOD!!!!!!!! I MADE IT!!!!! I DID IT!!!!! I'M FREE!!!!! THANK. THE. LORD.

Marge :)

Week 9 surgery

Well, week 9 has come and gone. Seems surreal. I went in Thursday and had my last reconstruction surgery. Went different this time. Not all the tests before surgery, just change into gown, get the IV...which the nurse couldn't do! Bruised up both my hands! When I had my mastectomy that nurse had no problem! Plastic surgeon came in and drew all over me. Marked where the ports were, marked for the lipo and marked where I wanted my cleavage done over. I didn't really like how he did it the first time, they were too close together. Crazy how you can just pick how you want your boobs to look and a dr says, ok, we can do that. Want more roundness and definition? Ok, we'll suck some fat out here. Strange.

The nurse told me when I was ready to go in she would give me a shot to relax me and it would work in 30 seconds to 1 minute. She was right! I remember watching her put it in my IV and I kinda remember kissing Matt. He said he had to jump up to kiss me goodbye because they immediately started wheeling me away. Last time, all the people that were going to be in on the surgery were waiting in the OR. This time they were all gathered around me in pre op and followed me in. I had an entourage! lol. Last thing I remember was someone telling me to slide onto the operating table. Don't remember going down the hall, coming into the room, the mask, nothing. 

Woke up around 1 and they started pushing food and water at me, made me go to the bathroom and asked if I was ready to go home! I was out of there by 2pm, home by 3! Matt came in and sat with me in post op. I was sore, but not too bad. The nurse kept asking me if I wanted a vicodin and I told her I didn't like them. She kept saying I better stay on top of the pain, I was still feeling the anesthesia. That freaked me out cause I knew how bad I was hurting the first time around and didn't want to go there again! But also didn't want to be sick from the vicodin either. So I decided to take ONE, eat this time instead of having an empty stomach and see what happened. At 6:30 that night I said, oh, it's been 5 hours since I took pain meds and I have no pain, guess I'm good! Matt says, Woman, you are a bad ass!! LOL! But seriously, I really had no pain. I was sore of course, I'd been cut and rammed with the lipo wand, but nothing I even needed Motrin for.

We came home and just sat around and watched tv for the rest of the night and day, got a pizza for dinner. I was all bandaged up and dying to see my new cleavage but couldn't. I could see however all the dark purple bruising forming under my arms, where your bra goes!!! Wow!!! And it kept getting bigger and darker. And it really grosses me out to have stitches, especially in my cleavage. I was surprised to see them cause he glued me from the mastectomy. I have about a million little tiny stitches. Again I will say, Dr A knows his work! He's good! I'm thrilled with the results!!! I have a couple single stitches here and there from where he went in for the lipo too. They all come out this next Friday.

Lipo isn't as bad as I feared. My sides are SUPER tender and bruised bad, but I think it's going to be worth it. My chest, by my arm pits, isn't bruised at all but it's really tender. And it goes in now instead of having what I called a fat bubble right there. Too bad I'm 51 and not 21, cause I could wear a tube top now, for once in my life! My boobs are small enough and no fat would hang over!!!!! 

I had to go back to the dr Friday and get the bandages removed. Then we stopped to visit my sister Jill and then we went to about a million garage sales...that's how good I felt! BUT, I think getting in and out of the car and the car seat hitting me right in the bruised area every time I did, got to me by 5pm. I was more than ready to come home and sit still!

Soooo, I'm all done! I have my appt Friday for the stitches and I'm assuming probably a couple more follow ups with him, but that was my last surgery!!!!!! I am so thrilled to be past this. I am so thrilled to have kicked it's butt! I am so thrilled to have made it with no problems and come out on the wonderful side I did!!! 

So happy & grateful!!!!!!!!!

Week 8

Well, tomorrow marks 8 weeks. I am completely back to normal. I'm doing everything I was doing before with no pain, no restrictions, just like before. Getting used to the feeling of my new additions. Things feel different now. More firm than I've ever been. Sometimes so firm they are in my way! But getting used to it. Aggravating sometimes, but better than having breast cancer.


Went to the plastic surgeon today. He scheduled me to have the next procedure done, getting the ports off of the implants. I am at my desired, much smaller size and love it. So he will remove the tubing and ports and also going to do some lipo suction on the sides because I complained that they feel like they are in my armpits and he said he could suck some of the fat off the sides and make it less bulky. Also going to do a little at the top, near my armpits, on the front, for the same reasons. I am not thrilled with having lipo done, scares me, which made the nurse laugh because I'm afraid of the lipo after having a double mastectomy. I said yeah, that sounds dumb! He said because of where the lipo takes place he will not be able to RAM the tube thing so it will be a more gentle procedure than what you see on tv. Which also means there could be less bruising. Recovery time is 2 days, so yay for that! 


Hopefully that is the last procedure I have to do. I'm soooo ready to be done with this! I know it's only been 8 weeks, but I feel I've been going through all of this since my diagnosis, December 14th, which means 5 months and I am really ready to be done and no more dr's!! I know there are people out there doing chemo and radiation for months at a time and my heart goes out to them. There's also people who have the expanders in and are getting fills and going to the dr for months too, so I know I'm lucky to have all this done in just 8 short weeks, but it still feels like forever.


For mothers day Kari got me a tshirt that says, yeah, they're fake! My real ones tried to kill me! Thought that was funny! And today I got my pink survivor bracelet in the mail that I will proudly and happily wear! Soooo glad I caught this so early and was able to stomp on it til it was gone and can go on and live my life! 


Another update after my outpatient surgery next week.

Week 6

Normalcy!! That's what week 6 is all about! I feel pretty much normal again. I guess it's a new normal cause obviously my boobs feel different, but it's a good normal. No pain left at all. Everything is healed up good and looking really good! Again I will say my plastic surgeon did an awesome job!


I've been working in the yard all week. I still get tired easier than I used to and it frustrates me to no end! I have things to do and I can't stand not being able to do them! Matt says it's from sitting around for 4-5 weeks, I'll have to build my muscles and stamina back up. It makes me mad to get so tired that I have to go sit down in the middle of my to do list. And even worse that sometimes I just can't finish it. I know, I know, it's only been 6 weeks since I had major surgery! But I feel so good that I feel like I should be able to do whatever I want/need to.


I am thrilled to feel this good after just 6 weeks, believe me. I think I was pretty lucky in the healing process. I have to say I was more patient than I thought I would be. I don't have a lot of patience!! I followed dr's orders, didn't do my housework or shopping or anything without help until I got the go ahead and maybe that's why I have felt so good through this process.


We were talking today about week 1 and how I couldn't even stand to take a shower without almost ending up in tears from the pain and being soooo tired I HAD to sit down NOW. How showering was such an ordeal and task with the drains hanging around my neck and how Matt had to dry me off, wash my hair cause I couldn't reach up there, dress me. I am soooo thankful to be past that. 6 weeks flew by, yet it seems so long ago.


I have no regrets of my decision and never will. I am cancer free, no worries, no tests, no drugs. And I love my new small boobs! All you women out there with small boobs wishing you had big ones, no you don't!! Believe me! Small ones are soooo much better! ;)

Week 5

Well, week 5 and I feel great!! I almost feel right back to normal. If my breasts weren't so tight, I would. They aren't as tight as they were but still tight. Takes time to soften and loosen up I'm told. I'm pretty much back to doing whatever I want. Matt still has a fit if I lift something but nothing hurts when I do, it's not a struggle and surely my internal stitches are healed by now! Besides, both dr's said do whatever I feel I can do. I don't push it still. There are certain things I'm nervous to lift, but for the most part I'm good. Amazing to heal from such a major surgery so fast! 


I still have a couple procedures to get through, some nips and tucks as Dr G. called them, but they don't happen for a month or so. They want to make sure all the swelling is gone before we do any final adjustments. I will be THRILLED to be all done with this!!! 


I was so afraid that I was going to be stuck in a chair watching Matt & Kyle do stuff in the yard, mostly worried about working in the garden, but it doesn't look like it's going to be any problem at all. We were dragging branches and wood to the fire pit the other night and I worked in my flower bed. Feels so good to feel normal again and not have all the stress the cancer diagnosis brought with it. Matt said he's finally started to relax and not worry about me now that this is getting farther and farther behind us. I'm so glad. I knew this was really getting to him. His mood and energy has perked back up and he's not calling me everyday like he was ;) . 


Just really happy to have this in the past (even though we're not completely there yet) and moving ahead and never have to worry about it again. Monday I have a date with the treadmill :)  Only thing that's been holding me back this week is my back. It's hurt since surgery. I'm trying to get an appt with the chiro for tomorrow but can't get ahold of him.


Marge

week 4

Well, week 4 went a lot better than week 3. I have felt a lot better and got the clearance from my plastic surgeon to do whatever I want, using my own discretion. I've been cleaning but nothing too strenuous. Just getting my house back to clean. Matt & Kyle did their best keeping the house up but I think they got burnt out towards the end. I think they're glad I'm back to cooking and cleaning.

I was hoping at Wednesdays appt that he would be ready to close this all up but he's not. he wants to wait another month because I am still pretty swelled up. I've decided not to get anymore saline put in. all that's in there is what was in there When he placed them during surgery. I'm small, but that's what I wanted. I've been BIG all my life and just don't want to deal with that again. so when the time comes he'll detach the ports and pull the implants down into place.

I still feel very stiff and tight and he said it will take a while to soften up, give it time. I feel much better than previous weeks so that's good. I tore my incision a little tiny bit but he said its superficial, nothing to worry about, it will heal. It had been pulling really hard, making me think a stitch was too tight and I think it broke loose. Feels much better now! but now have to let the tear heal.

Certain things are harder than I want them to be, like sleeping. I slept in the recliner for 3 weeks. I'd try to get in bed and COULD NOT get comfortable. I am finally back in the bed but in my back and I am a stomach sleeper! Hard to sleep, I wake up a million times a night. Driving isn't as easy as it used to be either. hard to lean forward and hard to keep my arms up on the steering wheel. And hard to put my socks on haha. I can but it takes effort.

But there are plenty of things I didn't think I'd be doing yet and am thrilled to do, like the clothesline. And I really never had a lot of problems with my arms past week 2. I'm feeling better everyday and with each week I'm amazed at how fast and well I'm healing. And last but not least, my shirts fit a jolt better!! :)

Week 3

Can't believe how fast time is flying by. especially considering the boredom and long days stuck here alone. hard to believe its been 3 weeks already.

week 3 was definitely more challenging than week 2. mentally and physically. mentally because I'm feeling better and want to do stuff around here but get tired and sore easily and then have to sit down and then feel frustrated that I am so tired from washing a few dishes. Feel like an old lady. Plus, I've never been stuck in my house for 3 weeks and not be able to drive anywhere. really tired of this chair and the tv. been reading some and Sue gave me a puzzle book, been doing that. Change of pace!

Physically because I had some trouble with the torture strap over the weekend and haven't worn it since. woke up in the night and it was squeezing down so hard on me I had to undo it. Felt like my boobs would explode out the bottom of my incisions! Not fun! I was in a lot of pain in the middle of the night and never really went back to sleep. Put it back on the next morning and it was still way too tight and it was rubbing me raw under my arms. thought I could take a couple days break from it but the raw spots won't go away so yesterday I called the dr and told them what was going on and he said I don't have to wear it.

but the problem is that my implants are too high and he said when we go in to detach the ports then he will probably have to go in and pull the implants down. Sounds like loads of fun!!! In the meantime, now I have lumps way up high on my chest and over by my armpits and they are really in my way and annoying. I don't go back to the dr until the 25th so have to deal with it until then. I think at that appt we decide if I want some saline added to make me bigger and then go in and detach the ports and be done. I will be sooooo glad to be done!!!!

I had read on a couple other blogs that weeks 3 and 4 were most challenging for them so guess I'm right on par! I feel good today and did more around here than I've done yet and then went to lunch with Sue and still feel good, so making progress here. It can be frustrating at times. I keep saying I just want to be back to normal. Been a while! But I'm getting there...slowly but surely.

Week 2

wow, I can't believe it's 2 weeks today since surgery. But most of all I can't believe how far I've come in these 2 weeks. I feel so good now and really didn't expect that in 2 weeks. My drains came out yesterday, finally, and I am so thrilled about that!!! those things were a pain!! In my way to shower and many other things. Good riddance to them!!! But boy did it hurt getting them out!! WOW, didn't expect that!! good thing is, it only hurt for about 5 seconds and then it was over. Just the actual removal of them. so glad they are gone!!

the dr gave me the go ahead to do some light things around here, hooray!! I feel so bad for Matt working so much and so hard, driving an hour there and back and then cooking dinner, trying to clean up around here, doing laundry. He's been very overwhelmed with it all and very stressed with the whole surgery thing. He told me last night he was so worried about how much pain I was going to be in after surgery. me too, but surprisingly it wasn't as bad as I expected. the first few days were, make no mistake, but by day 5 I was off all pain meds except maybe an occasional Motrin here and there. I didn't like the Vicodin AT ALL so quit taking it, but quickly realized I really didn't need anything. I had read the sooner you stop taking them, the faster you'll heal, so maybe that plays a part in how far I've come.

so today I made the beds, washed a few dishes, folded some towels and did some picking up around here. there's still so much to do, but after doing that I actually was sweating for some reason and took my shower. Came out ready to sit. I plan on cooking dinner for the first time tonight too, something small though.

Feels so great to be getting back to normal! Can't wait to see how good I feel by week 3!!

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! 

FINALLY

My BRCA results are FINALLY in. took long enough. 6 weeks for what should be a two week wait! They are negative!!! I do not carry the gene mutation!! I am THRILLED!! Thrilled for myself, thrilled for my daughter, thrilled for my sisters and nieces and thrilled for my son. It carries a lot of cancers with it so I am glad to not have to worry about all of that.


The oncologists office called me on Friday asking if I wanted to do another test called the BART test if my results came back negative. It's $700 and since it's an experimental test, insurance won't pay for it. I asked if my results were in and they said no. Then they called on Monday and said they are in. Fishy to me, but whatever. She wanted to set me up for next Tuesday to come in for my results...um, no. I went in yesterday.


When she called she said, your BRCA results are in and the dr would like you to come in and discuss the results. I KNEW they were positive because who gets called in for negative results?? Stressed out all night and all yesterday morning. All kinds of stuff going through my head. So when he said, it's negative, you don't carry the mutation, I didn't know how to react at first. My mind was so set that it was positive that I kind of sat there not knowing what to say. I asked him, why did you call me in for negative results?? Couldn't they have told me on the phone? He flipped through all my papers and said, actually, I don't know. oy. 


He also asked me how my second surgery went. I said, second surgery? I haven't even had one surgery yet. I've been waiting on these results. He said, oh, how did your surgery go then?    ??????? I said again, I haven't had any surgeries yet. Me & Matt kept looking at each other like, wow. He spent a lot of time flipping through my folder. Then he asked me who I was using for my lumpectomy. I told him, I still want the bilateral mastectomy. I've had 11 weeks to think about it and research everything and I am set on doing this. I have no doubt in my mind that this is what I want, what I'm going to do. He said he couldn't 100% agree with me because if he did, he'd be out of a job. It's his job to preserve the breasts and if he recommended all his breast cancer patients to have mastectomies, then he would be out of work. He said he didn't disagree with me either because if I'm going to live in fear of it coming back...and it does (he said that), and it also goes to the other one, then this is probably the best choice for me. He asked if I had a surgeon to use. I told him about the 2 he recommended...one won't talk to me about it and the other flat out said no. He was very surprised about that. He said he couldn't believe they said that. He said this is definitely an option and lots of women choose this option and it's my body, my life, my decision and he didn't understand why they felt that way. Then he got on his phone and made a couple calls to surgeons and plastic surgeons. I'm still waiting on call backs from them or him.


By the time we left the office I was starting to feel the weight lift off my shoulders. I've been so blah for so long. No energy, just dragging around. I feel such a weight off my shoulders. I can't imagine how I'm going to feel after my surgery is complete and I'm healing and healed. 


I asked him if I did go with the lumpectomy, what would be my treatments afterwards and for the rest of my life. He said radiation for sure, 7 weeks, 5 days a week. This time he said no hormones. I pointed out that last time he said hormones. More paper flipping haha. And also said every dr has told me hormone receptors. He said, we'd have to see after the lumpectomy. That's what I've been afraid of! That they tell me I don't need this and that so I go ahead with the lumpectomy and then they tell me I do need this and that. no thanks! And then he said he'd order MRI's every 6 months, probably for the rest of my life!! 


So then I asked what my treatment would be if I do the mastectomy and reconstruction. He said my numbers were so good on the BRCA report that it would be nothing. My chances of ever getting breast cancer would be extremely low. No mammo's, no MRI's, nothing. Done worrying, done dealing. That's my ticket! THAT'S what I want.


So, now to find a surgeon. I have an appt Friday afternoon with a breast specialist/surgeon. I'm hoping and praying she's on my side. I really want this done and over with.


For now I'm celebrating my good gene's!

Unbelieveable

the receptionist at the dr office told me she would have someone call me for sure today with some answers. it's 6pm and my phone hasn't rang. at 4 I decided to call again. I got no answer twice so decided to call their social worker, who told me to call her anytime I needed anything. I told her what was going on and she said the dr has gone home already and won't be back until Thursday now but on Thursday she will get the letter ready for him to sign and have it sent. I explained to her that I have a surgeon appt Thursday and now don't know what to do.
she asked me what the dr suggested I do. I told her lumpectomy but then he wanted me to test for the BRCA gene so I was waiting on that. she suggested I go with the lumpectomy and then when I get the results, we can go from there. OMG, I lost it on her. I said, so you're suggesting I have the lumpectomy and then if I come back positive, I can go back for the mastectomy? she said, well, the mastectomy would be your choice. I said, I was told that the dr's would suggest a mastectomy if I test positive. she didn't know what to say, just kind of sat there. she said, there really isn't anything we can do until Thursday, he doesn't come in on Wednesdays. nice.

I told her about calling Shannon twice and she has never called me back and never called the lab back and guess what? Shannon left for vacation today! I cannot believe she would leave me hanging like this. you honestly went on vacation without calling me back?! she said, they were really busy yesterday. I said, really, that's no excuse. she couldn't find 5 minutes to call me back and let me know what's going on? she also went on vacation without getting that letter ready for him to sign. so, she was just going to never deal with it? Or deal with it next week, or whenever she comes back from vacation?! I am so pissed. I can't believe this keeps happening to me. Its like a nightmare. I find out I have cancer and no one will help me.

I'm going to my surgeon appt Thursday and telling him I want the mastectomy and I'll see what happens.

White lies

Well, they called back, but it was the receptionist and she had no idea what was going on. She called to tell me that my results weren't in yet. She was all rushy until I said, I know, I called out to the lab in Utah. They told me Dr Pallas hasn't sent in the letter of medical necessity yet and that makes my kit incomplete and they don't accept incomplete kits. She immediately put me on hold to go "check on something". She comes back and says, Shannon is gone home and Dr Pallas isn't available (even though the office is closed), so I will get some answers for you and call you back. I then told her I have an appt with a surgeon on Thursday and I really needed to have these results back because they were going to be my deciding factor between a lumpectomy and a mastectomy (white lie) and now I feel it's a wasted appt since I don't know whether I'm predisposed to the cancer gene so can't make that decision for another month now. Told her the lab told me I could have had my results last week and would have been all set for my surgeon appt but now I'm going with no answers. Also told her that I've been sitting here with cancer for 2 months and I'm getting nowhere with dr appts (crying at this point out of frustration) and I'm getting really sick of all the mistakes which result in delays of my recovery. She was VERY apologetic and said she'd call me as soon as she found something out. It's not her fault, I know, and she's probably wishing she wouldn't have called me and let Shannon call, who was supposed to be calling me, but too late now. She got the ear full. She definitely wasn't expecting me to say I called the lab myself but I'm sick of depending on these dr offices and getting nowhere. Absolutely nowhere. I've never heard of someone being diagnosed with cancer and left sitting for 2 months!


As for Shannon, for someone who showed so much compassion when I was at the office getting my blood drawn, she sure isn't very compassionate when it comes down to it. the lab faxed her several times trying to tell her they needed my letter of medical necessity and she never responded. They called her and she said she'd ask the dr for it and has never gotten back to them. I called her twice yesterday and she never called me back. the last time I called the receptionist said she was with Dr Pallas going over records and she would give her my message which was, I need her to call me back TODAY. Nope, never called. Went home knowing I NEEDED a call from her. I thought once the receptionist told her I was calling maybe it would jog her memory and since she was with the dr she would say, oh yeah, we need that letter for her. But nope, she just went home, not even telling the receptionist what was going on. When this is all said and done and I am recovered, there will be lots of people getting letters of their poor professional and personal skills. I'm really sick of being pushed aside. I know there are people out there with a lot worse cases than me, that need much more urgent care than I do, but I still have cancer. I still need surgery. I still need to be cured. I would like to get rid of it before I turn into one of those cases that need urgent care!


So I'm going to my appt with the surgeon on Thursday, telling him what has happened to me and telling him I want the bilateral mastectomy asap, I want to get this over with and I don't want to go the lumpectomy/radiation/hormone route. I'm sure Dr Pallas' office put me on the back burner because of the decision I've made. After all, it makes no money for them since I won't be needing their services of radiation and hormone therapy. Thanks for your compassion Dr Pallas.

Venting

Really stressed out right now, need to vent. Called the oncologist office this morning to talk to them about my letter of medical necessity they haven't written yet and the receptionist keeps telling me Dr Pallas isn't available and Shannon is busy. I am waiting on a call still. They close at 4:30 and here it is 3:40 and nothing. Called again about 3:00 and she said Shannon was with Dr Pallas going over charts and she will get her the message. I told her it's really important she gets back to me today. Whenever I say something like that, the receptionist gets all business like and snotty. She cut me off twice. I finally talked over her and said, I NEED to talk to Shannon TODAY. If she doesn't call,  Matt will go in there tomorrow on his lunch hour. Believe me, they will wish they had called me back today. =/


He wants to go in but I am trying to deal with this myself. He has enough stress going on and I don't want him going in there and yelling at people when this is something I can deal with. But if they don't call me back today, I know him, he will be in there tomorrow. 


I made an appt with a surgeon for Thursday. The dr is recommended by a friend but I'm so paranoid now after all the bad experiences I've had that I'm really stressed right now. Not to mention that you don't want a bad dr when it comes to someone performing this surgery on you!! So nervous to choose someone. Not feeling very lucky right now...or confident in my dr choices! Hoping for the best. Receptionist was nice =/


I just want all this over with. Been reading all weekend about it and the recovery is scary. Seems you heal pretty good and up and around fast but the total healing is over a month or two and you're very limited on what you can do. One person described it as, hold your elbows into your sides, keep them there and move your arms about. That's your mobility. Matt said like a T-Rex!! So, combing my hair? Make up? dishes up high? anything above your head. no lifting, no closing car doors, no vacuuming, you can't even open your own pill bottle for the first week or two. Never thought about how much you use your chest muscles.


On the good side, no more bra wearing!!!!!!!!!!!!!! I will be FREE! Loving that!! ;)


More when I have more...

More...

I forgot..I called the lab back to tell them to just go ahead and run the tests without the insurance approval because I thought the paper said it was $375, but she said if we don't run the insurance, it's $3340.00!!!!! wow, really!!!??? For a blood test? That's ridiculous!!

talking with Matt this evening, we both have decided that we need to just move on. we've had such bad luck with dr's since moving back to Michigan and we're just going to find a good surgeon and plastic surgeon and get this done and move on. we both need to stop thinking about this all the time, it's driving us crazy...literally. Matt doesn't know what to do to make things better and he said its making him crazy because he's always been the one to fix things and he can't fix this. he has a hard time leaving me all week because he thinks I sit here and think about it all week. Most of the time I don't. I have my days but I try to hide it cause I don't like him worrying about me and he needs to go to work. And I do keep busy. Most days I handle this better than I ever thought I would. but one thing can send me straight over the edge.

And you can bet, if Dr. Pallas' wife or daughter had breast cancer, he would NEVER forget to send in a letter of medical necessity.

PISSED. OFF.

After waiting for 16 days for my BRCA results, I decided to call today, out to the lab in Utah and see what they had to say. Dr office is supposed to be calling me with test results. I ask how long it takes to get results and they say usually 14 days. My heart starts racing, thinking I'm about to hear whether I'm positive or not. She looks up my account and proceeds to tell me that Dr Pallas, the oncologist who ordered the test didn't send in the letter of medical necessity. The lab has been faxing and faxing, several times, asking for the letter before they can run the test. She said she ended up calling on Wednesday because she was thinking they weren't getting her faxes. They were getting them....and not responding. I asked why they weren't responding. She said, I asked too and Shannon, the girl who drew my blood, helped me with the requisition form, said she asked Dr Pallas for the letter of medical necessity and he hasn't given it to her yet. This letter was supposed to go out to Utah WITH the blood and with the requisition form and with the copy of my insurance cards. I could've had my results TODAY had the dr office got off their asses and did their jobs. Every single day I sit here with my phone next to me, waiting for it to ring, thinking today is the day I'll get the results and then I can move on, make appts with plastic surgeons, get this going. Every single day I wake up thinking today is the day. I carry my phone to the basement just in case it rings. I run to it when it does ring. You know what the problem is here?! The problem is that the dr office has already forgot about me. THEY don't have cancer so no hurry to them. THEY don't have to wake up in the middle of the night every single night of their lives and the very first thing as soon as their mind works is the words I have breast cancer. They don't have to wait and wait and wait and anticipate getting their breasts cut off. I left that office and left their minds. Why would they even send the packet out there incomplete? And then just forget about it and not even answer the faxes?? I am beyond pissed right now. I am on the edge of losing it. THE EDGE. right there. one little tiny comment, action, word, mistake away from completely losing it on someone.


So now it's going to be another 2-3 weeks, could be more, before I get results. they have to wait for the letter to get to Utah. Then the lab has to submit it to my insurance and my insurance has to review it all and submit it and see if they'll cover it. And the BART Shannon ordered, they don't cover it. It's $700. I didn't even know what they was. She said it's in case I come up negative. They will run more tests to check better. Screw that. If I'm negative, I'm negative. I'm still getting a mastectomy. 


I tried calling the dr office and lucky for them they were closed. Because I was so pissed off I was crying pissed. I was going to let them have it. I was going to tell them they weren't sitting at home with cancer waiting on a phone call that would change their lives, thanks a lot for forgetting about me. So they will get that call at 8am Monday. Welcome to your work week.


I'm not waiting anymore. The next call after that will be to surgeons. I'm done waiting. I'm done thinking about this. I've had cancer cells in me since December 14th that I know of, longer than that, but who knows how long. I'm done. I'm proceeding with surgery without the BRCA results. Then if they come in positive, then I'll look into getting my ovaries out. I'm gathering all the numbers I've been given by friends and relatives and making calls on Monday for some appts to surgeons. I'm done waiting on people that don't care.


I'm so done.

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.