D?

Seeing as I will be this size for the next 5 months as I wait for my next surgery and the fact that the kids are in a wedding next weekend, I figured I should probably get a real bra (as opposed to the thin cami bras that I have been wearing). Since I will only be this size for 5 more months, I didn't want to spend much money so headed to Penneys with my 10$ off coupon. They recommend you don't wear and underwire with expanders in since you still have numbness and may not feel if it was digging in. Well trying to find a non-underwire bra in the right size at Penneys was difficult! So I settled on the wrong size but its good enough! 34C is what I ended up with, 32D is what I needed. Apparently they don't carry many 32s and not many 34Ds either! So 34C it is for now, doesn't fit great but it was cheap and will meet my needs for the next 5 months. I am guessing when I am done with all of this I'll be a 32 small C depending on what style/brand of bras.

And when I am done, I'll be buying a whole new bra wardrobe! It is kind of exciting to know that I will be able to wear cute bras which I never have been able to wear before!

Almost a month!

Well its been almost a month since my final fill (and my last post)! So where am I at now... Well, I've got approximately 5 months until surgery number 2, I'm having zero pain, no issues, and really not thinking about any of this much at all.

We have been super busy lately with kid stuff, birthday parties, wedding stuff (sister in law is getting married and both kids are in the wedding), getting ready for winter, painting the living/dining/kitchen... just busy! Which is good at the moment as winter is approaching and things will calm down as we retreat into the warmth of the house and avoid the bitter cold.

I can pretty much do anything now. My range of motion is basically fully back minus the ability to hang from my arms like on monkey bars or anything... not that I have a big need to be doing that but attempted a few times at the park and its so not happening. Otherwise, life is good.

It does all seem a little surreal. Three surgeries on one day which took a bunch of my insides out... After thinking about all of the surgeries that I have had in my life, it all just seems normal to me. A weird surreal normal. I've had near half my pelvic bone taken out and donor bone put in, a chunk taken out of my left lung, a revision to the donor bone graft, half my colon removed, numerous central lines placed and taken out, numerous bone marrow biopsies, and now my ovaries, tubes, uterus, and mastectomy with expanders....And I'm sure I am missing some other random surgery. For me, missing parts is just part of life! So far I really haven't missed anything that I am missing. Life is far to important than to waste time worrying about losing parts and instead focus on staying healthy, living life, enjoying every day, loving my kids and cherishing the moments that matter.

And so I will be enjoying the winter months, I can't complain so far we haven't had gigantor snow storm yet so already winter is off to a good start! Before I know it, spring will be here and I will be preparing for my next surgery which will be nice to put this chapter behind me and move on... healthier.. happier... and not worried about when cancer may occure but instead focused on the future, the kids, and living life.

Final Fill!

I had my FINAL fill today!!! WOoo hooo!!!!

50 more on the left and only 20 on the right to even it all out! So now at 385/325 which is even because of my lovely deformed chest cavity!

So plan now... do nothing! I'll call back in 3 months to schedule a surgical date for 3 months after that! So hoping end of April beginning of Mayish! Which will leave plenty of my summer to be enjoyed!

Its kind of crazy to think how well the fills went give I got off to such a rough start. Amazing really. So now I have finished another HUGE milestone, a big step in this journey. The next surgery should be much easier since everything will be stretched and is basically just a switch out for real implants. That and the fact that I am only having one surgery instead of three at once!

I am fairly sore tonight and am assuming tomorrow won't be the most comfortable but I am done!

I am guessing the blog may be a bit quiet for a while which is a good thing! I'll pop in once in a while but hopefully there is nothing to report!

Thank you all for the continued support!

"I check out the boobies"

Apparently some small people in my life are noticing my ever growing chest! The other night my son (2) was sitting on my lap, touched my boob and said "iPod"... um no (1- I have no iPod and 2- if I did that wouldnt be it!)... So I told him it was my boob to which he replied, "um, I check out the boobies?"...um no... it was hysterical and due to our reaction he happily said it numerous more times with a big smile on his face. Then last night he climbed up on my lap, put his hand on my chest, smiled and said, I check out the boobies. Nice kid huh! So needless to say my charming little 2 year old son thinks he is a very funny little boy!

I saw plastics today (YAY) after having a 3 week break due to my surgeon being out of town and the nurse wanting me to have him see my progress before deciding on a final volume. So my real volume when my real implants are in will be somewhere between the last two fills. Starting with this fill everything is over fill. So I got 60 on the left side (smaller side from my bent ribcage) and 40 on the right which brings my grand totals to 335/305. So I will have one more fill and hopefully do another 50/40 which should even the last little bit out and get me big enough to stretch the skin enough for the real implants.

I was able to nail down a little more for a surgical time frame. If I get the next fill by the end of the month then surgery would be Aprilish. He's unsure if we will do hyperbaric before, after, both, or neither... he seems to think that my skin is much better now and that with the technique he is going to use that I may not need it as long as I eat a ton of meat protein before then! So we'll see. He thinks that it will just be day surgery as well!

So we'll see how I feel tomorrow and if I want to do a fill next week or the week after. I am pretty sore from this one so may wait a little longer than a week but we'll see.

Its nice to have at least a sort of tentative plan for when things will happen so I can start planning my life and not live in limbo land.

So once again I move forward and feel really good about this whole decision and am SO glad that I was given the gift of a choice.

Uppitty up up!

Another fill down! Tuesday I had another fill and had 50 put in the left smaller side and 40 put in the right side. I would have done 50 but the skin looked tight and they don't want to over do it. Plus at some point they need to start evening them out!

So the plan is to see the Doc in 3 weeks (he's out of town) and then decide how many more fills and what amount they want my to be at as my overfill. Initially it was 300 but it may be a bit more now.

This fill was the first one where I could really feel the expansion happening. Amazingly I was only a little sore that night and the next morning and am already back to feeling fine and the skin is all stretched nicely.

It is odd how much better I feel having real boobs! I've always been pretty flat and its really never bothered me. I've never really thought much of it. I guess surviving childhood bone cancer puts little things into perspective and it never really bothered me. But now having them, its kind of nice! I can wear shirts I couldn't before. I look normal in a swimsuit. I feel more girly. I was much more modest prior to having any boobs and now I would show just about anyone! They are great! I guess as long as I am going through all of this a little perk (no pun intended) is a good thing!

So I go back October 12th to come up with a plan!

Hmmm

OK so fill yesterday went fine but I could feel some more stretching than I did the previous fills... Well, this morning I was SORE! Super sore but it only lasted for an hour then after carrying JT around for a bit everything loosened up and the pain when away. Still can feel tightness but no pain.

I was a little worried when I woke up because it was so sore and I hadn't really had any soreness with the fills, but no worries, keep truckin forward!

Final Product!

I had another fill today, had 50 more put in. I am at 225 which will be the final product when I am done with my next surgery! So they will over fill by 100... I know right! Yikes! So I will have 2-3 more fills depending if they even them out or if he thinks that he can just even them out when I have the next surgery. So 2-3 more fills, then wait 6-12 months then surgery (and more hyperbaric)! So at least an end is somewhat in sight... or at least a plan for the end!

They look pretty good right now besides being a bit square from the expanders and rock hard! I can feel more tightness with this fill as well and am assuming that the next couple will get tighter as well.

The interesting thing about boobs is that on me with my frame and size 225 is perfect but on someone even a little bigger than me 225 would be nothing! And also depending on the projection and shape of the implant the size can differ significantly. Mine are small and perky where as if they used a bigger expander they would be wider and flatter at the same volume.

As someone who was pretty much flat, it's nice to have some boobs!

Oh and a few people were under the impression that the port was outside of the skin and asked why I couldn't just slowly expand at home since I was a nurse. The port is actually under the skin and a needle is used to access the port and inject the saline. So I will not be poking myself at home!

The future is looking brighter every day as I slowly move forward with getting to the end of this journey! So much for a short term blog huh!

175... Moving on up!

Expansion number 3 was on Tuesday! Went just as well as the others. 50 more in bringing me to a total of 175 on each side! They are almost perfect! another 50 and they will be about the size they will be when I am done but we will overfill to about 300 to stretch the skin enough so that when they put the implants in that they sit in a more natural position. This time I was a teeny tiny bit sore the next morning for a couple hours but it went away pretty quick and was more than tolerable, not even tylenol worthy.

At my next fill (hopefully next week), we will most likely start to even things out. Although they have the same amount in them because of my pectus excavatum (bent up rib cage), the left one sits in about an inch further than the right so I will need two different sized implants in the end to make them appear to be the same size.

Do I dare say that the expansion process is going GREAT! And is almost enjoyable! I've never had boobs before and am quite enjoying not being flat! I even wore a cami with the stupid built in shelf bra today which I NEVER would have worn before without also wearing a padded underwire underneath it. It looked great (I had another shirt layered over it as well)! Regardless it is going well and my hope is that it continues to go well!

125!

Well I had my second fill today. I was nervous but not as much as the last time! It went well! I was able to feel the needle on one side today, not the piercing of the skin but more of a popping pressure dragging feeling. She injected 50 more cc's into each expander. Most people have somewhere between 50-125 put in each time and with my skin issues they want to do it slowly. As she injects she is checking capillary refill in my skin to make sure we aren't causing any issues.

So I'm at 125 in each expander (goal is still 300). The reassuring thing today was that the 50 didn't cause them to get much bigger but to fill in more. Kind of like when you blow up a floaty inner tube and its full of air but you need to add more to get it to be firm So I think the 240-260 implants will be just right and make me around a full B.

It is nice to have some perkiness there seeing as I have never had anything! I went to the pool with my daughter and a friend with a 3 year old as well and I actually had a tiny bit of cleavage! In a swim suit the expanders looked completely normal! In real life, not so much! But I know that when I have the second surgery that the implants will look and feel much better than these! Seriously they are rock hard and don't move at all!

So as long as tonight goes well and I'm not too sore in the morning, then we will do another fill next week! I've got no pain or tightness now so here's hoping it goes well! I am very relieved not to be having issues with the fills and blessed to hopefully be over the hump!

One Fill Down

Well I feel just as great today and am actually excited to have my next fill! So no pain soreness or anything! YAY! Finally things are looking up!

So next fill will be on Tuesday!!!!

I survived!

I did it! I survived my first fill with minimal issues! My appointment went well. My incisions are fully healed. I was told to keep eating the cheeseburgers (seriously, I've eaten more cheeseburgers in the past month than I have in the last 5 years!).

So they put in 50cc's which brings me to a whopping 75 cc's. Basically they refilled me back to where I was after surgery before they sucked it out! My goal is 300cc's so I've still got a ways to go but at least its going!

I really didn't feel much. I am assuming the fuller they get, the more stretching/pain you feel but for now it went amazing. Definitely is working on decreasing my procedural anxiety since it went so well!

The expanders are still hard. I thought maybe once they had fluid in them they would be softer but apparently they will be like rocks until I have the exchange surgery done. I now am actually back to my natural pre-surgery size (although to everyone else I probably look smaller due to previous padded push up bra illusions!).

Since it went well and I got the ok to go swimming, we are planning a weekend family vacation! YAY!

So the plan from here is to see if I am sore tomorrow. If not, then we will do another fill next week, if I am sore then we will do it in two weeks instead.

AHHHHH

Well, tomorrow I see plastics. Everything is all healed up so I am assuming that I will have my first fill or they will schedule it... Its great to be moving forward but my anticipatory procedural anxiety is kicking in! Lets hope it goes better than when they sucked the fluid out!

Anticipation...

Well, the scab at the end of the right incision has come off and is fairly healed underneath. There are no more blatantly open areas. That area isn't quite as healed as the rest but its not open!

I see Plastics in a week and a half and most likely will have my first fill. I honestly did not think that every thing would be even close to healed by then! After the debridement at my last appointment, I figured due to my insanely slow healing that it would take at least a couple of months for it all to heal up. So in less than one month both incisions are closed! So yay!

Knowing that my first fill is on the horizon leaves me with anticipation both good and bad. I have a lot of procedural anxiety. Most people at this point are fully filled or close to it and I haven't even started. So for most people the skin is fairly numb since it takes a while for the sensation to come back but for me, I had hypersensitive skin and no numbness in the area of the expander port. So the needle is not going to feel good! If it doesnt go well, then I will be requesting emla next time! The first fill most likely will be a low volume and then I will be able to see how my muscle reacts. Right now, I have nearly no pain and can do pretty much anything I want (even went on a log chute ride with my daughter today!). And with the expansion, the pain will come back, movement will be restricted some, and I could have more issues.

But the fill also means forward progression, one more step closer to the next surgery, one step closer to being me again.

nine days, no post

Well nine days of non-posting! I think I am in a good place right now with healing and don't see plastics for 2 more weeks! The incision is almost healed just about one centimeter left of a scabbed area. Its not draining any more or anything so is healing well!

We ordered a new mattress which came today! Hooray Tempur Pedic! I SO wish we would have gotten it before surgery! We had a Select Comfort which was great until about a year ago when it went on a slow decline to deflation and brokenness! So my side of the bed was a big dent so I have been sleeping on Jareds side. So tonight... REAL SLEEP!

Boo Hoo!

Nothing new to report here!

My incision looks like it may be starting to heal so that is good. The one edge of it is closing together and the other side isn't draining as much. I'm really not having any pain at all unless I switch or twist weird or if I lift one of the kids and hold them for too long. I feel fairly normal...until...

My friend and I had a brilliant idea today to take the two kiddos to the beach. I knew that JT (2y/o) would just putter around the edge of the water and play in the sand and AJ (3.5y/o) would want to swim. My friend wanted to take her swimming so I knew it would be fine with me not getting in the water. So I got everything together, got the kids ready, and then was going to go change my clothes.... I knew I wouldn't be wearing a swimsuit but wanted to have shorts and a tank on so that I wasn't too hot.... So I put on a tank and you could see every dent in my left expander. I'm not a self conscious person but I knew I couldn't go out like that... so I put a second tank on top thinking that layering may decrease the flatness and make it so it didn't indent.... nope... great. So this was the first time where I wanted to cry about how I looked! Now I was fairly flat prior to surgery but could wear padded bras so at least it looked like I had something but now, not. And my old bras hurt to wear since they aren't the same shape as the expanders. So I plopped on a t-shirt that at least hung flat instead of indenting.

And so we went to the beach and had a blast, spent a few hours there. The kids LOVED it and it was gorgeous weather and warm water! And a big thank you to Miss Lindsy who braved the lake with Miss Addy (who also loved her new floaties)!

So with a new found respect for the expansion process, I am actually looking forward to getting filled! Even just to relieve the concaveness so that I can wear different shirts. Its the little things that you realize things aren't actually going to be normal for a while!

CLEAN!

One of the groups of CNS's that I work with wanted to do something to help so chipped in and got us a housekeeper for 4 hours! Well Molly Maids came today and our house is spotless...at least for the next two hours till the munchkins come home! They even dusted the picture frames! So an amazingly huge thank you to all of you! It was super nice to come home to a clean home. Hubby even mowed the yard today!

Everything else is status quo! Still some burning off and on in the one open incision. I can almost get my arms above my head. My muscle above the expanders is still sore off and on. Sleeping is going better (minus the 2 and 3 year old who are having sleeping issues). AND I worked a full 6 hours today! Planning on 6 hours the next few days and then will reassess. I am taking it slow because I don't want another set back of any kind!

Ouch!

Ok, so I got the OK to do more from plastics and well it hurts!

Moving my arms too high or too far out to the side hurts! I also tried changing JT's diaper today and he is heavy! Picked him up and put him on my hip and could feel it all day in my chest. The muscle hurts and it pulls in the center by my sternum too. The open area on the one incision is burning which is annoying but hopefully that means it is healing!

So gotta remember to take it slow and just because I have the OK to do more doesn't necessarily mean that I should!

It's ALIVE!

OK, most of you probably don't want to read about nipples and incisions so if you don't, click out now!

Went to see plastics today and he peeled off my scabs and eschar (dead areas) and well the right one that had a lot of issues, the nipple is alive! Instead of completely drying out and falling off, it healed from the inside out! So what does this mean? They hyperbaric worked. My body is finally starting to heal and hopefully collateral vessels have been formed to help continue to keep my radiated skin healthy.

It didn't hurt when he peeled everything off but I have a lot of procedural anxiety but it went well anyway!

So next step is to wait a month for healing to continue (there is now open areas where some of the incision scab was peeled off). Then next time we will most likely do my first fill. Which leaves me with mixed feelings...1- its great to be making progress and finally know that hyperbaric helped, 2-filling is no fun and can cause a lot of pain and discomfort, 3- this journey is going to be way longer than I was hoping. I had hoped this would be a short term blog but, guess not! 4- excited to be moving forward yet again!

So I now have no appointments for a whole month! WOO HOO!

He also said that I could lift again! Which means I can start working on being able to hold my kids! Although I lifted a 24 pack of coke today and found out how weak and deconditioned I really am! I also have no restrictions on movement so I can start stretching and trying to regain my range of motion. So my main restriction is just not swimming/bathing and not getting kicked in the chest (which believe me is a big risk with my two year old)! And he wants to give me a prescription for a giant juicy cheeseburger once a day! He is sure that my increased meat intake is helping with the healing as well. So if anyone is up for lunch, I'll have a burger!

I did it!

I made it through my first day back at work. It was only for 4 hours this morning but I did it! I am now tired, sore, and have a giant headache but I got some work done. I got my emails down to about 150 emails that I need to do something with (projects, etc) or that I need to follow up on. It took 4 hours to go through my whole email pile. How ridiculous is that!

Tomorrow I see plastics and then Friday I will be working another half day!

Sleeping is going ok, only waking up about 2-3 times a night and able to fall asleep a bit faster than before. Still in bed with gigantor pillow which was definitely a good investment!

Incisions are still scabbed over and the one is still oozing some blood off and on so we'll see what plastics says tomorrow. My range of motion is still limited. I'll be checking on that tomorrow as well. I had started doing stretching but not sure if thats a good thing or not so I stopped! My chest is really tight in the center and when I stretch my arms up or back my armpit muscles are super tight and hurt and wont let my arms go in that direction!

Things at home have been going pretty well. I'm able to do more and help out a little bit.

Yesterday a coworker of mine called, one of the groups that I work with chipped in and got me a cleaning service! So they will be coming Tuesday morning for a couple hours! I'm hoping they can clean all three bathrooms and possibly the kitchen floor! I am so blessed to have such wonderful coworkers!

Our frozen food supply is still going strong! Most people made fairly large meals which have been lasting us at least 2 days so we are going through the food much slower than we anticipated which is a good thing. We've also received some gift cards to various restaurants which is nice for a change of pace as well!

Well I will keep plugging along and will keep you all posted!

Back to work and other updates...

The recliner came and I used it the first night and was fairly comfortable except the cats were rubbing on it all night and the room we have it in is filled with toddler toys that apparently randomly go off during the night for a not so restful sleep. So slept in our bed the next night and slept a bit better. So maybe the sleep thing is finally going to start working. We may move the recliner up stairs but haven't decided yet for sure.

I saw the Gyne surgeon today. No big issues. I'll see her again in 6 weeks and then really don't need to follow up with gyne after that unless I have issues! Yay for no more yearly appointments with that department!

I'm going to attempt work this week! My original return date was Thursday but I am going to go in Wednesday and Friday morning for 4 hours to see how it goes. Then we will take it from there to see what to do next week.

I see plastics on Thursday. The left incision is looking pretty good. The scab is peeling off and it looks like a normal incision. The right side looks the same as it has, no better, no worse. I'm assuming it is working on healing from the inside out!

I finally feel like I have made a little more progress. My chest is tight but its not always painful. I'm not constantly thinking about my expanders and the pain. I can do some more normal activities without too many issues. Still can't lift anything over 10 pounds but have found creative ways to get the kids higher... like kneeling on one knee and having them step up on my other one :) My new bra's came in from Penneys so those will be nice for the expansion process.

I've been meeting random friends for lunch off and on during the week (most of which I don't get to see very often due to conflicting schedules) which has been a nice break to the days!

So here we go, moving forward once again! Wish me luck at work on Wednesday! I'm sure the first day will be going through the thousands of work emails!

No news is well.. no news!

Still not sleeping great but seem to be getting a tiny bit better. My parents have an old recliner so they are bringing it down this weekend to see if that helps. When we went up north I slept in a recliner and it helped a little more so we'll try it!

Talked to my boss and work is pretty flexible about me taking more time off if I need it. So trying to figure out what the best plan is. Hoping to do two half days maybe next week to test it out and see if I can do it!

I see the gyne surgeon on Monday and plastics on Thursday next week so we'll see how those go! I'm assuming that everything will just stay status quo since plastics doesn't want to do fills until the incisions are completely healed which I am guessing wont be for a while!

Emotionally I am still a bit up and down. Just sucks that this is going to take so much longer of a process than I anticipated and I will be missing out on parts of my kids lives in the meantime which I know in the long run I'll be here longer without cancer (that's the plan anyway!) so will get those moments back later but its still hard. I miss my friends, they miss theirs, I miss being normal. Ok, well I've never really been normal, but miss being me and just aren't my bubbly outgoing self at the moment!

It will all be worth it once this is all done so I keep on trucking!

Sleep in sight?

Well last night tried something new... I took zero meds before bed, no tylenol, no valium, nothing. I noticed the other day when I tried valium and oxycodone that I was quite relaxed but still couldn't sleep and was still stiff and sore in the morning so it didn't prevent future pain either. So went to bed. Left AJ asleep on the floor downstairs (Jared was down with her, she fell asleep there on her own), and JT was in bed upstairs but apparently at somepoint during the night got up and was yelling for daddy so Jared brought him downstairs too (I obviously slept through it). I think I got around 4 hours of sleep last night (at once) which is a huge improvement. It takes me a while to get moving in the morning but once I am up and going the pain and muscle spasms get better. All three were still asleep together on the couch when I came downstairs!

So I'll try that again tonight, no meds and see if it works again! I think if I could sleep at night then I would feel so much better and not so lethargic during the day.

I started doing some of the stretches today. It made me realize how little I really can move my arms at the moment. Its sore to do the stretches but felt good afterward and even after doing them only once, feel like I got a little more range of motion back. So I'll be attempting those 1-2 times a day.

Incisions and everything are pretty stable and status quo, not really healing much from what I can see on the outside but not getting any worse. I just started having a tiny bit of abdominal pain but I am sure its from using those muscles to get in and out of bed now that I am sleeping in a bit more reclined position. Otherwise the hysterectomy part has caused me no issues or pain or anything! Which I pretty much expected since my last abdominal surgery (hemicolectomy in 2001) went the same way with minimal pain or issues. So at least the hysterectomy double salpingoopherectomy part went perfectly!

I'm getting more use to the feel of the breast tissue expanders inside my chest. They are rock hard, lumpy (since they are empty), and poke out the sides since I am small. My muscles are finally accepting them as being there and aren't fighting them everytime I move my arms. I got new bras. More thin sports bra/half cami type bras that will expand with my expansions. I've got two more on order as well. I also need to order some new scrubs for work that button up so that I can get them on and off as things over my head aren't going to happen for a while since I can't get my arms up that high yet.

I'm working on figuring out what to do for work. I am scheduled to return to work next Thursday the 21st but am not sure I am ready for that yet especially since I just finished hyperbaric this past Friday and am just starting to attempt somewhat of a normal routine. My arms aren't working great yet and I am just so dang tired! I do a lot of computer stuff at work and even blogging for 10 minutes is still tiring. So looking into options on that front as well.

The kids are doing well. They have adjusted fairly well to the new normal of mommy not being able to lift them, run after them, or play in the same way. We are finding other ways of bonding. Last night both curled up with me to read books which was a wonderful feeling that I could finally curl up with both of them and not be in pain. JT (just turned 2) has learned to ask daddy for everything now which is good but kind of sad at the same time. AJ (3 1/2) is doing pretty well except when daddy has to help JT and she needs something at the same time. I am finally able to start helping with more little things with them like getting outfits out, getting a glass of water, snacks, etc. So it's easing the burden on Jared a tiny bit. I even brought a diaper to the park for him! Made it the whole half a block by myself and then sat and watched them play for a bit before heading back. I feel bad that they haven't gotten to see their little friends very much or be able to do all of our normal crazy activities but they are coping pretty well for being so little and not understanding. Hopefully I'll feel better soon so we can at least go on some playdates!

I did get AJ's hair done with the help of Jared taking out the braids, washing her hair, and attempting the first comb through. I did big fat twists with a cornrow around her head and it all ending in a pony tail. It doesn't look great and is pretty fuzzy already so I'll need to redo it soon but it's a start. Cornrows are just too hard right now with having to hold my arms in weird positions for that long. So I'll hold off a couple days and attempt a redo.

I've driven twice now and that is going better than I expected. I'm just a little more cautious around corners and bumps!

We've eaten out a few times and besides looking like a total slob since I am wearing comfy pants (hyst scars still have some scabs and rub) and zip up hoodies (cant get things over my head), and hair combed but not done (can't use a curling iron above my head).. I have been able to make it through most meals. Even met a good friend today and was able to sit for 1 1/2 hours eating and talking and catching up. And drove myself home (ok, it was only a mile from our house but still!).

I am really excited for Wednesday. There is another lady in our area who just had a similar surgery a few days before I did and we are meeting for lunch on Wednesday. Her surgery went very well and she is doing great so it will be nice to meet her and be inspired by her progress!

Moving forward a little!

Had a rough night last night with little sleep due to being sore and uncomfortable. My gigantor pillow ( 6 ft U shaped) came (http://www.amazon.com/Leachco-Back-Belly-Contoured-Pillow/dp/B0002E7DIQ/ref=sr_1_1?ie=UTF8&qid=1310088764&sr=8-1) and was highly recommended on other PBM forums and I think its going to be great once I get a little better pain control at night!

Had hyperbaric this morning and saw plastics this after noon, here are the highlights:

• Last hyperbaric tomorrow (20 total) but will do 10 more when I have my exchange surgery in the future
• Can stop wearing the binder (YAY! now just need to find bras that will work with expansion, got one at target before surgery that feels pretty comfortable so will be going back to look for more of the same brand tomorrow)
• Everyone thinks the incisions look fine and to just let it be and let the scabs come off as they want
• We wont start filling until the incisions are completely well healed so most likely not for at least another month
• Plan to fill with 1-2 ounces at a time with a goal of 300 cc's to be able to put in a 250cc implant (a can of soda is 355cc's if that gives you some perspective)
• See plastics again in two weeks
• No movement restrictions (just the 10 pound lifting restriction)
• No good suggestions from them for sleeping. I was kind of dissappointed, he doesn't like to use ambien and I was told it will get better to try different positions/pillows/etc. which I have already been doing so hoping to hit a turn around here soon because I need some sleep!
• He isn't worried about my skin for the expansion, he said that with the hyperbaric and the healing looking good that it wont be a problem, they will just do the expansion slowly.
• And I need to drastically increase my animal protein to aid in healing which will be a little difficult. He said at least two burgers a day (or chicken/fish/eggs etc) but wants it to be animal protein. And for those of you who don't know me well, I'm not a big meat eater and am super picky about what meat I will eat! So sloppy Joes for dinner, not insanely healthy but he didn't care if what I ate was healthy as long as it was protein.

So all in all everything is looking better. I'm supposed to start work exactly two weeks from today but need to make quite a bit of progress before then to be able to even go back at 4 hours. Since I have bee doing hyperbaric everyday it wears you out and kind of blows your whole day (drop kids at daycare, do hyperbaric, eat lunch, rest, pick kids up, eat dinner, play, get ready for bed) so not much time for actual healing. So last hyperbaric tomorrow, then my plan is next week to start doing arm stretches to try to get back some range of motion and to sit my laptop at the table and start working on the computer for 15-20 minute intervals to try to increase my sitting on a hard chair/working on a computer endurance, and to start trying to walk longer distances. Right now I get tired really easily and with my job, I have meetings all over the campus so need to be able to walk quite a bit as well. And then at the end of the week we'll see where I am at and if I think I will be able to start work or will need more time or shortened days.

Keep on truckin! Please think happy forward progress for me!

Quick Update

Well I met my goal of being able to go up north with our extended family for the fourth of July!

It was nice to be out in the fresh air, by the lake, just relaxing.

I've got three more scheduled hyperbarics and I see plastics on Thursday to see if they want to do more or not and what the plan is. I've got a new little issue with my incision, its leaking a bit and has two new red areas that make it look like it wants to pull apart. And now one end is peeling as well but that may be expected. So I'll have the hyperbaric doc look tomorrow and see if I need to see plastics sooner or not!

Other than that, nothing new! I am doing somewhat more each day, or at least when I was up north I would rotate from spot to spot to sit so felt like I was doing more! The muscle spasms are getting less intense and I am able to move my arms a little more but need to clarify what my movement restrictions are before I do too much.

More later!

UGH!

Had hyperbaric today and my left ear would not cooperate! Wouldn't pop with the pressure so had intense pain. Tried a bunch of things but they wouldn't let me continue today since they don't want my eardrum to rupture. So I was pulled out. My eardrum is a little stretched and bruised and is most likely didn't cooperate since I am getting over a little cold/allergy thing. So another little set back. If it clears by tomorrow (my ear is all plugged and I can't hear well) then I'll rejoin the hyperbaric crew tomorrow, if not then I'll need a few days off which isn't the end of the world but just another setback and delay to normalcy.

yay!

Hyperbaric this morning then off to see the surgeons. Breast surgeon said that everything from her standpoint is good, all tissue remove was clear of any signs of cancer and I don't need to see her again!

Saw plastics, plan for doing the full 20 hyperbarics so have 9 left and will finish on my birthday! They will do it mornings during the week, no weekends, no holidays, and not July 5th. He seems to think that doing this will make everything back on track. We wont start any expansions for quite a while. He wants everything to be completely healed (no scabs or incisions that are even slightly not healed).

Got the drains outs! YAY! I have massive anticipatory pain anxiety and the surgeon was great and super supportive and it didn't hardly hurt at all!

And so we move forward!

good day.. sort of!

For those of you who know me, you know that I am busy! I hate sitting still, I'm not a huge TV fan, we typically have plans or go to the park or do something fun every night, just busy. Even when we aren't doing anything, we are busy. So as you can imagine, being stuck on a slowdown, take it easy isn't easy for me!

The past two days I've started feeling a bit better, more normal. So today went to hyperbaric and then decided that Jared and I should attempt to go out to lunch. Gotta eat right! So ate at famous Daves which went well. Then stopped at Target to grab a couple things, Jared was just going to run in but I decided I felt good enough to go to....

Got home... CRASHED!!!! So tired, way over did it. Took a 2-3 hour nap! Had a friend stop by this evening, and then snuggled on the couch with miss AJ.

And now since I had a big nap, can't sleep!

So note to self.... feel good... keep taking it easy. One outing not 2!

So depending how things go at the doc tomorrow, I'm hoping to ride with to watch AJ's soccer practice tomorrow.

Still can't lift anything, or even get our fridge door open for that matter so can't be home alone for long and can't be alone with the kids at all, so last night my dear friend Lindsy came and babysat Addy, JT, and I so that Jared could go play frisbee for a bit. Still having a huge outpouring of support! Sorry to all of you who I haven't emailed, called, or texted back. I'm working on it! My eyes are kind of goofy right now so I can't stand being on the computer of phone much and well phone calls seem to signal the kids to both melt down! So I will get back to you! Just might take a bit!

Thank you to EVERYoNE for all the prayers and thoughts! Keep them coming!

short and sweet but at least an update...

OK, so havent posted in a while.... So made it through surgery, was in for 2 nights, did ok. They Hysterectomy part was cake! No issues, no real, pain, etc. The mastectomy part went well. The expanders..... um not so fun. Lots of muscle spasms especially since I am pretty tiny, was pretty flat, and the expanders are under my not so strechy muscle. It was hard for them to get the expanders in but in they are.

If you remember, I chose to do nipple sparing basically just so plastics had extra skin to work with with the intent that I would most likely remove them with the surgery later when they did the tissue expander/implant exchange a while down the line. The day of dismissial one nipple was darker... not good, means the skin from my radiation is not getting enough blood flow thus causing some necrosis. They dismissed me with an appointment after the weekend to see plastics again.

At the appointment they removed 50 more cc's (which by the way was much more painful than I anticipated!) out of the implant (they only had been able to put 75 in to begin with because of my radiation)... so down to 25 cc's basically nothing but the expander takes up quite a bit of space. We decided to do hyperbaric for 10 days to see if we could improve blood flow. So I was readmitted for 4 days, did 2 treatments a day for the first 3 days then went home Thursday eve after hyperbaric number 5. I did treatment number 9 today and tomorrow was slotted to be my last one. Well after talking with the hyperbaric doc, he's thinking since eventually I'll need a second surgery and they want my skin to be as healthy and plyable as possible that ten more treatments (so a total of 20) would be recommended. Then when I had my second surgery, they would do a couple treatments right after surgery as well.

The dark necrotic area is smaller and the surrounding skin looks much better. Most likely the necrotic skin will just slough off.

So a little unsure of what the future plan will be. I see plastics and the breast surgeon on Wednesday so hopefully a bit more of a solid plan. At this point I'm feeling a bit better, pain is better under control, still have the stupid drains in so hoping that plastics will let me get them out soon! They aren't putting out much but he wanted to keep them in for hyperbaric so hoping he'll take them out on wednesday and let me do the rest with out them!

Otherwise we are doing ok, a little rough at home with the two little ones and not being able to snuggle, hold them, and play pretty much sucks. Hyperbaric is wearing on me. I bounce back really well from surgery and wasn't planning on having issues. But with the set backs and coming back in every day for hyper baric (minus weekends/holidays) it makes me frusterated and has brought back all of the emotions of being a cancer patient again. I was sick 16ish years ago and now it feels just like yesterday, going through the motions, living according to doctors appointments and treatments, and missing out on life. So what was an elective (sort of) procedure, the emotional aspects of complications are wearing on me. Not being able to do everything with the kids is the hardest, especially knowing that recovery will now be longer than my initial 6 week plan.

I'll be talking to plastics about shortening the long term plan of expanding to a full B and see what other options there are and if being smaller would be a shorter process or not. I'm guessing most will related to how the rest of the hyperbaric goes.

I still am very glad that I have done this just haveing a more emotional journey than I expected!

I'll post more after the appointments on Wed! Say prayers for a good visit!

Day one!

Well I made it through surgery! Yesterday was a long hard day but making progress today!

Surgery was around 8 hours long and then an additional 3 1/2-4 hours in the PACU. Everyone was super nice and really listened to my concerns and addressed them. The staff were very reassuring. My friend Mary who works in the PACU even came and found me prior to surgery in the preop area to offer hugs and support.

Surgery went well, no evidence of breast or ovarian cancer which is amazingly wonderful news! Still waiting for one more specimen to read out but otherwise all looks good.

After surgery I had a crap ton of pain issues so stayed in PACU for a while and then went up to the floor. I have had amazing nurses and even the anesthesia person stopped by today to see how I was doing since I was so scared and had concerns about anesthesia, she wanted to make sure that everything went well and that I didn't have any recall or paralysis issues this time.

Today has gone fairly well. Really feeling good sometimes and muscle spams from the expanders at other times. I got 2 PIV's removed, the catheter out, 4 walks in already, eating real food, and able to move around pretty well slowly!

Had a few visitors which was really nice. Friends are such a good distraction! Jared and my mom were here all day, then meena went to get the kids from daycare and feed them and now Jared has gone home to the kiddos and meena will be heading back hopefully bringing me dinner!

Well its hard to type with a pulse oximeter on my finger so I will write more later.

Thank you for all of the kind messages, emails, texts, and prayers!

One More Night!

Addy and I had a wonderful Addy-Mommy day! That was such a good idea if I do say so myself!

Had my nuclear medicine injections today.... um ya, don't recommend that to anyone! Leaving Emla on for only 20 minutes really not even worth it. 4 injections on each side for a total of 8 injections and they were the most painful injections of my life... worse even then when Jared was giving me shots! But the pain was short lived so I'm over it.

So tomorrow is the big day, still need to call in tonight to find out my check in time.

Please keep the prayers coming tomorrow!

Thank you!

I just have to say that I have some amazing friends, family, and coworkers! I've had an outpouring of support and love the past day. Everyone is super supportive and wants to make sure that I take the time I need for recovery and are willing to help in any way. People wanting to make sure Jared knows if he needs anything that there are people here to help, wanting to watch the kids or help pick them up if needed this summer, people saying extra prayers.

I had two more friends stop by tonight with more meals to freeze so our total frozen meals (including the 11 that I made) is up to around 22ish! I'm hoping to not have to cook for as long as possible so feel free to keep cooking! No meal will be turned down :)

I stopped at a few more stores on the way home from work and found my zip up t-shirt hoodies! Shopko of all places. They aren't the best quality but they should work! And since they have a ton, I can send Jared back for more colors if I end up needing them for a while!

Today was my last day at work now for a while! I took the day off tomorrow to spend a mommy and me day with Addy. Our plan is to go to an indoor amusement park in the morning for a couple hours, shop, do lunch, and then head back home. She's going to be THRILLED! I got our discount tickets online tonight and lucky for me since she is only 3 her "chaperone" gets to ride FREE! So it should be a fun day.

Then tomorrow after noon, I need to have my labs drawn for a type and crossmatch in the random chance that I would need a blood transfusion. Seeing as I had literally hundreds and hundreds when I was sick before, I'm not worried about that at all. And I have my nuclear medicine injections at 3 pm which I am SO not looking forward to but I'd rather have everything checked out! They do sentinel node injections and basically during surgery then they scan to see if my lymph nodes took up the isotope. If they did, that would be indicative of possible breast cancer. They don't expect to find anything since my mammos and MRI's have been negative but they check before surgery so that if anything is going on that they can remove the appropriate lymph nodes at the same time as surgery. It's pretty standard to do it.

Meena will be coming tomorrow night as well to help with getting the munchkins to daycare in the morning and Addy starts soccer tomorrow night so that should be fun as well!

Thank you all for your continued support and prayers!

Coming together...

Things are all coming together... I've got most of the house well cleaned, although with a 2 year old and a 3 year old, clean is subjective! I made 11 meals this weekend to freeze and have had a few amazing friends bring over a few more meals! Our little freezer is starting to look a bit fuller! (is fuller a real word?) I've got daycare drop off/pick up arranged compliments of my parents. And have random offers from numerous people to help in the coming weeks as well (and to give Jared a break:).

I've got a fun day planned for Addy and I to have a mommy and me day on Wednesday. She doesn't do well when I am away and even though its only a night or two, I know it will be hard on her. So hoping to fuel up on mommy time! I'm hoping to not tell her where I will be but to tell her that I will be gone for a couple of nights and try to avoid telling her where. We will be avoiding the "H" word...(hospital) or telling her that I am sick because I don't want to scare her. Being three she understands and processes way more than a normal 3 year old should! So when I get home then we will talk about having surgery, having owies, and being careful around mommy. I've had my sister and a friend both live with us for a few weeks at different points over the past year and a half from having surgery so she gets that. So if by chance you see Addy before I do, please don't talk to her about details or tell her anything that will scare her. When I'm away she needs lots of reassurance that mommy will always come home and will never leave her. Last time I left for a while, she was super sad and scared that I wouldn't come home, so trying to minimize that as much as possible. And with Meena and Papa here, they will be a good distraction!

Just a few things left to get done before Thursday! If anyone knows where I can find zip up short sleeve hoodies, let me know! I've scoured the town and can't find them anywhere!

Answers!

Finally some answers and a tentative plan!

Met with the plastic surgeon today who was super nice and had already read up on my history and talked to the other surgeons about their plan (always a good sign when they know all about you and take the time to read up on your issues). One of the first things he said was, "it looks like you've already been through hell and back" when starting to talk about my history. He gets it. He said that they are seeing a lot of people who had sternal radiation for lymphoma in their teens now getting breast cancer and since I had full lung radiation for my Ewings Sarcoma I probably have a higher risk than them. So good to really confirm that I am doing the right thing!

Seeing that I am small, most of the reconstruction options aren't a viable option for me since I don't have extra fat to use for flaps etc. And because of my small cup size and radiation, doing a direct implant isn't the best option either unless I want to be smaller than I currently am, which I'm not sure is even possible! So an expander it will be with an alloderm graft as well. My left rib cage has pectus excavatum basically I have a bent up rib cage that is all misshaped. This limits my options as well as I am most likely missing an additional muscle that they use for the surgery, hence the other reason to use the alloderm. The alloderm is a human or pig (gross I know) tissue matrix (the real cells are all sucked out somehow and you dont have rejection issues, your body eventually reabsorbs it and lays down strong tissue on top), this will allow them to place the expander (and eventually implant) under the Pectoralis Major muscle and use the alloderm to hold it in place on the under side. The expander will be placed and filled partially full with saline.

Then after surgery about 2-3 weeks later, I will start having the expanders filled every 1-3 weeks depending on how my skin tolerates the stretching (radiation makes it more fragile so we may have to do it more slowly). Once we get it to where we want to be (hopefully a full B cup), then they will over expand it to be a C cup. They then wait 6 months to a year to let the muscle and skin fully stretch and relax. After everything is ready, then they will go in and switch out the expander for a real implant (silicone or saline). The over fill the expander so that there is room and so that the real implant isn't perched high up on your chest but in a more natural position. The expanders aren't the most comfortable thing and are much harder than an implant will be and won't feel real natural but then when you get the implant its much more normal and real feeling.

For now we are going forward with the nipple sparing procedure. Mainly because he needs the extra skin to be able to fit everything in. If I want to remove the nipples later, they can do that at the time of the implant switch out so I have some time to decide what I want to do, which is kind of nice!

So we are moving forward! One week till surgery day!

I've got a ton of stuff to get done so hoping to deep clean the house, get the kids summer clothes out and make sure things fit, get stuff ready for them to start their new schools, cook meals to freeze, clean out my car, and hopefully make it to a graduation party! Jared is busy on Saturday so hoping to do a lot tomorrow, Sunday and during nap time! I also need to get a couple of my tomato plants staked or caged and do laundry!

I'm anxious for surgery to be done but super nervous. I hate anesthesia... its kind of like my flying fear... I don't like having someone else completely in control of my life. I have the same feeling that I get when I know I have to fly... panicky and scared! But I trust my physicians, they have all reassured me and each of them has said that if anything was looking like something was wrong (bleeding etc) that they would stop it and close me and finish the surgery later so as not to put me into any jeopardy. So they are all watching out for me. I will be talking with anesthesia in depth the morning of my procedure. I had an issue with one surgery where I woke up before the paralytic had worn off and was still intubated, couldn't move or open my eyes but could hear everyone around me and thought I was dead. So I don't want that feeling again and was told that they could reverse the paralytic before they wake me up so I need to ensure that happens!

Everyone has been super supportive. I've found a few others who are getting ready for their surgeries, one is even here in town! And have found a network of other pre-vivors!

This surgery won't define me but it will be a part of me and a big part of my life for the next year until reconstruction is completed. My hope is that once I am complete that I can move on, live my life, and leave behind the fear.

Approved!

I got insurance approval!

Tomorrow is the big day! I get to see plastics and hopefully get a more solidified plan in place!

Not much for news!

I saw the general surgeon who will do the mastectomy part of my surgery. She (and her resident) were GREAT! Super sweet and nice, very reassuring, and I've heard really good things about her as well (always a good thing to have connections!). Nothing to new and exciting from their standpoint. Incisions won't be as big as I had thought so thats a good thing!

Basically the only decision I need to make on their part is nipple sparing or not (with reconstruction later). They think it's safer now but since its a newer procedure, they won't really know for another 10-15 years how safe it really is. I'm leaning toward not doing nipple sparing since it may increase your risk of breast cancer and if I'm doing this big of a surgery, why wouldn't I do everything to decrease my risk as much as possible. And with my radiation, they aren't sure its even an option so again something that plastics will need to discuss and help decide on as well.

I also met with the educator in plastics who educates you on the different reconstruction options so that when you meet with plastics that you know what they are talking about and then plastics talks to you about what your specific options are.

I see plastics Thursday afternoon and so then will hopefully have some answers!

Otherwise just kind of in a holding pattern! Surgery is scheduled for the 9th and I will more than likely be first case since it will be long (around 7 hoursish). The day before I have to go in for a nuclear medicine injection. In surgery then they do a scan to check to see if any lymph nodes light up or are suspicious for any type of precancerous cells in which case they would take those lymph nodes too. They aren't expecting to find anything though since my scans were just all clear!

Still waiting on insurance clearance as well. Hoping to hear something in the next few days!

Questions!

Well I got the garage mostly clean last night minus finishing sweeping and a few random things to still put away! It actually didnt take too long! Later this summer we will get a little storage shed and that will definitely help with our garage space (or lack there of). My friend Lindsy and I went to look at freezers and lucky for me the one that I looked at last fall was on SALE! 80$ off! So I bought it and we set it up last night. I settled on a smaller upright and its perfect!

A lot of friends have been asking a lot of questions about my upcoming journey so I thought I'd share a few of them...

• How many night stay at the hospital? 2-3 nights depending on if they can get my pain under control and there aren't any complications (which there wont be!)

• How long will the recovery take? It depends on what surgeries they end up doing... should be about 6-8 weeks. If they have to do the hysterectomy open instead of robotic, then I'd have a 7 inch incision on my abdomen which would not be the most fun thing in the world. I've heard that the tissue expanders are the worst part since they are stretching the muscle.

• Do you get to pick your "size"? Not sure yet! Depends what plastics says, I see them next Thursday. I'd like to be a full B but its not a deal breaker if that doesn't happen.

• Will "they" look normal? Eventually! It depends what plastics says, what they want to do, what they think will look best and if an additional surgery etc is necessary.

• What can I do to help? Still not sure and probably wont know forsure until I see how it goes after surgery! Once I am feeling better, visitors would be great! I'll go stir crazy being off work for that long! I'm sure the kids will need to go to the park so think of Jared for park dates too! Freezable meals for the kids and Jared would be a great help as well!

I really don't know much more at this point. Next Tuesday I see the General Surgeon who will do the mastectomy part and Thursday I get to see Plastics which will be a relief since they call the shots and they are the last ones I get to see! I'm still waiting on insurance approval so say a prayer that they cover it without extra letters or anything!

We have a little family fun weekend planned so I am hoping that the weather turns around and is nice out or we'll have to find more indoor activities! And then next weekend will be cleaning, cooking, and getting things ready!

If anyone else has other questions, let me know!

Thank you ALL for your love and support. I am SO blessed to have such wonderful people in my life!

Support!

Thank you to all of you who have emailed, called, posted, facebooked, and texted offering support! I'm going to need it (both figuratively and literally!!)!

I've been able to talk to two different people here in town who have had mastectomies and reconstruction (one prophylactic, one due to breast cancer) and both have done really well. I've touched base with the CNS on the unit that I will be on who was great and gave me a more realistic picture of the post op time. I've learned from a friend from a long time ago that her family has the BRCA gene and they are going through similar decisions, I've talked to my dear friend who has started the trail of surgeries from being BRCA positive, I've talked to a friend who works in the breast clinic who has filled me in on what all of the options and terms mean. I'm a medical person but I know nothing about boobs or reconstruction! I've been reassured by everyone that this is a good decision and that I am in great care. Every one is just super supportive.

I guess I kind of figured people would be supportive but with a more controversial elective surgery I figured there would be those who would think I was crazy for undergoing such extremes but I haven't encountered that at all! Although when you put my two risk factors together, it doesn't seem elective at all but a necessity. Do it now and hopefully prevent it or wait until I am forced to do it because of cancer. I'm kind of a control freak :) so making it my decision is much easier!

I've done a lot of research online and am patiently or rather impatiently awaiting to see plastics since they have the most say in everything!

I'm getting as informed as I can get and snooping around finding out as much info about my surgical team as I can and have found that I have the best!... minus the resident that I've already requested not be on my team:) I don't want to be the complainy annoying patient but if you don't listen to me and intentionally scare me then I'm just not going to feel safe in your care and well off you go! Thankfully the surgeon is amazing and was totally understanding and has ensured me that the resident won't be in on the surgery and will keep my contact with her to a minimum during the hospital stay. Gotta be your own patient advocate right!

I did get some good news though... Sounds like the main surgery will be the mastectomy, partial reconstruction or full reconstruction, and the full hysterectomy. This is a good thing and means only 1 or two surgeries depending if plastics does direct implants or expanders. I'm assuming it will be expanders but will have to wait to see! Plus if Jared wants double D's the expanders will have to be in for a few years! (for those of you who don't know Jared well, he requested double D's and butt implants... I'm not sure that butt implants are part of the hysterectomy but I'll clarify for him!)

So surgery is scheduled for the 9th! I'm awaiting insurance approval which no one thinks is going to be an issue but you never know!

I've also had an outpouring of people asking what they can do to help. At the moment, I'm not sure! I know we will need some help but I'm not sure what at the moment.

We are going to go buy a freezer for in the garage which we have wanted for sometime and I'll start making meals to freeze. Recovery is estimated around 6-8 weeks and I'm guessing I wont be cooking for a good part of that since my chest and arms will hurt so if anyone is bored and wants to make a meal to freeze we won't turn away food and you can bring it by anytime!

Probably won't hear anything much now until next week but I will keep you posted!

Thank you thank you thank you for all the prayers and support! Its amazing knowing that many people care and are saying an extra prayer for me and my family!

Moving Forward

Some of you are already aware of what has gone on the past week and a half and to others of you this may be new information for you!

In a nutshell, I'm having surgery... maybe 3 surgeries depending how much they can do.... A complete hysterectomy, prophylactic double mastectomy, and reconstruction.

So lets back the bus up a bit for the whole story....

At age 15 I had hip pain and ended up being diagnosed with Ewings Sarcoma (a rare pediatric bone cancer). Not exactly what I had planned for my high school years but you do what you have to do. I had chemotherapy for 3 months, then had an internal hemipelvectomy (surgery to remove part of my pelvis and reconstruct it with donor bone, plates, and screws) and then had 9 more months of chemo. A month after finishing chemo two spots showed up in my lungs. They watched them for a bit and one went away so wasn't anything and the other got bigger. I had relapsed. So had a thoracotomy (lung surgery to remove the tumor), radiation, high dose chemo, and an autologous bone marrow transplant (using my own marrow). So much for having a senior year in high school! But it was all worth it. I had many complications and random weird things along the way but I survived. I met many other teens my age who were fighting similar diseases and had too many friends get their wings way to soon. I am amazingly blessed to have been able to move forward and live life.

Fast forward a few years.... Around age 26ish I had melanoma insitu on my arm which was removed with an outpatient surgical procedure. I also had CIN 1 (precervical cancer) which was removed by an outpatient procedure as well. And have had some other random issues

Because of my treatments, I am at higher risk for other cancers; mainly breast cancer due to my lung radiation. I've always know this and had been started on yearly mammograms at age 25 and then added yearly MRI's at age 29.

This year something changed...

I had my yearly breast MRI & mammogram and the scans were clear! While sitting in the waiting lounge of the breast clinic waiting to see my provider, I remembered that I had a somewhat distant relative that died of male metastatic breast cancer and thought I should at least put that in my history. So I mentioned that to my provider and then we connected that his sister had ovarian cancer and how that was a super strong indicator of the BRCA mutation (the gene mutation that causes breast and ovarian cancer. The gene is also tied to melanoma which I've already had and thus there is a high likelihood that my family and thus myself has the BRCA gene. The breast clinic doc said that she didn't think even if I had the gene that it would change my risk much since i was already high risk from my lung radiation. She sent me to genetics, who told me the risk of breast cancer with the gene is 54-87%....87% YIKES! and the risk of ovarian 24-47%. Then i went and saw the breast clinic again and she said that my risk of breast cancer from the radiation was that high too (54-87%). Previous to hearing this, I for some reason had not asked what exactly my risk of breast cancer from my radiation, I just assumed it was like 15-20%... not 87%! So basically I have two strong risk factors with each independent of each other have a super high risk and no one knows what these two risk factors do together because there aren't many people who have both.... never good to be one of few but then again I tend to be a medical anomaly!

Basically this means that its really not a matter of if I will breast cancer but when and with having two little kiddos at home, I can't just sit around and wait. I want to make sure that I have done everything to prevent it as I could to ensure that I am here for them. Not everyone will agree with my decisions but I need to do what is right for me and my family. Even if it means having to put a stall on life for a while to get things taken care of.

So regardless of if I actually have the BRCA gene (I'm not being tested since its not changing the outcome), I would still be doing the same thing now knowing my real risk with my radiation.

Having surgery doesn't guarantee that I won't get breast or ovarian cancer but it will drop my risk to less than the general public and less than 5% depending what surgeries they do. But at least if I have surgery, if something happened far in the future, I will know that I did everything that I could.

So now tentative surgery at the beginning of June. Hoping to just have 1-2 surgeries but may end up being three.... So if its just one surgery it would be: Hysterectomy, prophlactic double mastectomy, and reconstruction. If its two surgeries it will most likely be hysterectomy, prophlactic double mastectomy, tissue expanders... second surgery would be 6-7 months later to switch out the tissue expanders for an implant. If its three surgeries it will be hysterectomy, then six weeks later double mastectomy and tissue expanders, and 6-7 months later would be reconstruction. It's pretty much in the plastic surgeons hands to decide what is the best for my body shape and what my options are since radiation damages the skin and tissue my options are a bit more limited and I'm pretty small so don't have a lot of extra fat for flaps. So until I see the plastic surgeon, things are pretty much up in the air!

I probably wont know much more until late next week but may not have final plans until the week of surgery. Its been a rough week (I almost killed a resident today but thats for another post) but its something I need to do if I want to be here for my two little kiddos!

I am completely open about this and more than willing to talk about it so if you have questions just let me know!

I've decided to chronical my journey via a blog to keep a journal for myself on what I have been through, to share my story, to gather prayers and support, and to be able to offer support to other "previvors".

I'm choosing to have a future with my family and leave my fears behind an although it will be a bumpy ride, at the end, my risk will be WAY lower and my family will have some peace of mind.